Are Prostate Cancer Doctors Still Clueless? This is Team Cap's Journey...
Florida Hospital East Orlando...Our Home Away From Home
Team Cap's journey with Prostate Cancer began in Jan. 2008 when Dave's PSA was found to be elevated during a routine blood test for his Life Insurance policy. It had been an emotional roller coaster ever since. I had no idea what a prostate was or what it's purpose was until my husband was diagnosed. That moment will forever be etched in our memory and had transformed our lives. We learned many lessons along the way, which I will share with you while you embark on our journey.
Needless to say, I now feel I am educated enough to write a book, such as this book, on the treatments associated with prostate cancer. That's what happens when we are forced to deal with the unknown. We research until our brain cells are exhausted and scream for a break. We cry and console. We walk around in shock and disbelief. We wonder how one tiny moment can change our lives so drastically. The one thing we never, ever do is give in....we fight back!
I have learned many basics that I feel I need to share. PCa is genetic even though my husbands first urologist who performed his biopsy said it wasn't, yes we dropped that doctor like a hot potato. Dave's father lost his battle to PCa in 1994, his older brother and younger brother are both in remission, as far as I know since the brothers don't communicate. A father and three sons battle with the prostate cancer beast tells me and anyone else with common sense that prostate cancer is genetic.
I've learned that all is takes is a simple blood test to check the PSA can save a man's life. Yes it's that simple. Every man should know his PSA baseline by age 40 not age 50. If that baseline number rises your doctor will know what to do next. A rise in PSA doesn't always mean cancer, there are other reasons, but a baseline is mandatory. A PSA baseline isn't 4.0 anymore, I've spoken with PCa patients who had cancer with a lesser PSA. Prostate cancer isn't just for old men, I've spoken with men in their thirties and forties with prostate cancer and some beat it while some died from it. A sad story which continues to tug at my heart is of a young dad whose wife had just given birth to twins when he was diagnosed. He died a short time later. Just not fair.
PCa (short for prostate cancer) can be caught early and cured with either surgery, radiation or hormone therapy just to name a few. The sooner it's caught the better. It has no early signs or symptoms, this is why the PSA test is SO imperative. A DRE (digital rectal exam) is just as crucial to have performed. Sure, men joke that there is no way they are going to bend over and cough...really? You could always put your legs up in cold stirrups and spread 'em! Or better yet, have your ta-ta's compressed between two plates until they are the size of a pancake! That's right...Man up! Get checked!
Dave and I together as a team have been through countless PSA tests during our journey of the past 7 years. We have been through numerous doctor visits, tests, xrays, radiation treatments and hormone therapy injections. My husband was truly my hero. He never complained or asked "Why me?" He handled every step of the way with his chin up saying "Bring it on!" He was a fighter who never had a pity party. Dave, Manned up!
My purpose here is to save a few lives by simply asking you to be your own advocate, have your doctor perform a DRE, get your PSA blood test and know your baseline number....don't allow Prostate Cancer to win!
We are often asked how the name, Team Cap, came about. My response...We are a Team. Dave is a fan of Captain America. He was a proud owner of many Captain America shirts in which he wore for his treatments. I would post the photos on social media, where we had a huge following of supporters. They would post, "Go Cap!" in which we became, Team Cap.
Dave was very proactive with having his PSA checked yearly, beginning at age 50 and also a DRE for good measure. His PSA was always below 4.0. In 2007 his PSA was 3.4, higher than 2.0 in 2006. His family doctor suggested a repeat PSA at 6 months instead of a year, but since the PSA was still under 4.0 Dave opted out and waited the full year. It was during this time that Dave's older brother was diagnosed with prostate cancer, but considered the diagnosis personal and didn't notify his brothers. If Dave had known at this time, he would have went at 6 months for a PSA test. If wasn't until after he was diagnosed that he found out about his older brother and was then told by his mother, "Oh, your brother was diagnosed last year." Wow! That was a MIND BLOWN moment. I can not emphasize enough the importance of sharing medical history with your family. I think Dave's story is a perfect example of how you could help save a life.
Guidelines state PSA under 4.0 is normal, so I can understand why Dave didn't panic. But I sure wish he took the doctor's advice. In 2008 his PSA was 5.6. That jump between 2006 and 2007 is when the cancer began. So in reality his post-surgery PSA that was rising was not his "new normal" it was the cancer that had escaped in his bloodstream. I figured this out on my own and I am not even an "Ologist!" I am a wife who was determined to fix what was broken.
Urologists and oncologists who care for prostate cancer patients, listen up...
I write letters for therapeutic reasons. At times I share the letters, then again at times, I do not. A letter is a way of having your voice heard while getting your point across. I wrote this letter to the clueless Urologist/Surgeon who performed Dave's robotic surgery in 2008. While his surgery was well done, he was obviously in need of further education for his post operative care.
This letter is not intentionally directed at just one medical professional, it's directed at many. I feel compelled to share some misinformation that my husband, I and many other patients received while in your care for prostate cancer. The data I collected over the past few years might apply to just a handful of people or maybe a few thousand. At this time I don't know how many people are affected, but hopefully I'll find out. If someone is ever in the same situation as we are I hope this message offers some insight for their journey.
After completing a successful robotic surgery on May 30, 2008 you, Mr. Ologist, informed us that my husband's post surgery PSA of 0.1 was "Outstanding, that's exactly what we wanted." Biopsy results showed cancer was organ contained, margins were clean, negative lymph nodes, no extra capsular extension and the seminal vesicles were clear. In your words, "Perfect results." We were ecstatic with the news. We made the correct decision to get 'er done and have the prostate removed. We can stop worrying and finally have a life again. Dave beat the beast. Since we were told countless times that "most men die WITH Prostate Cancer not OF" we assumed we were good to go.
But.....the PSA began to slowly rise, huh? How could that be? You told us, "don't fret, this is probably just your "new" normal PSA level." We were seeing your team of urological specialists, who work under your guidance. With you being "the BEST in the country" who teaches worldwide, we felt confident you knew what you were talking about. You were also the surgeon who performed the prostatectomy, because you have performed thousands of them and were highly recommended. How is that BEST title holding up for you these days?
Your team continued to hound us and try to schedule appointments for a penile pump. Are you serious? A penis pump? The PSA is RISING, you idiot! There is something wrong here that a penis pump will not fix! We would go into your office for follow ups. Before each visit Dave had to fill out a survey. Does your penis work? Erections? Urinary issues? Each time we shook our heads and said, this Doc is totally clueless with Prostate Cancer. He might be good at removing the organ, but when it comes to after care, he is a major fail. It was time to move on, unfortunately it was a bit too late. I think it is safe to say that we wouldn't be celebrating in Celebration, Florida.
Prostate cancer journey began on 1-29-08 with a PSA Alert of 5.8
Feb. 19, 2010
Aug. 20, 2010
Feb. 21, 2011
March 4, 2011
November 8, 2011
May 24, 2012
Casodex (added fuel to fire, use caution with this drug)
Oncologist ordered a break until further notice due to low enough level of testoterone.
October 4, 2013
January 23, 2014
May 23, 2014
Sept 8, 2014
Dec 29, 2014
April 20, 2015
Prostate Cancer journey continues...
How could you not now exactly was going on? The PSA continued to slowly rise. Hmmm? We asked you a few times couldn't the cancer have escaped via the bloodstream? Your cocky response was, "Absolutely not possible, even if maybe a few cancer cells escape they need their buddies to survive and without them they die." Well doc, we have news for you....it is possible and the buddies came along for the ride. You offered no other explanation as to how there were still cancer cells present and accounted for with Dave's perfect post-biopsy. You did mention that we had no worries for at least five years because prostate cancer grows at such a slow pace. You then told us Dave might possibly experience a chemical recurrence. do you think? We beg to differ, doc, there is no "might!" You were wrong, yet you never offered an apology. Something was wrong and you allowed us to waste months of precious time. You should be ashamed of yourself.
You then suggested we see a radiation oncologist. You passed the buck since you obviously had no clue as to what was going on. I sure hope you furthered your education and did not lead other men to believe they were cured when in reality the cancer was continuing to fester in their bloodstream.
So....we placed our trust in the radiation oncologist since the "best doctor in the country" had no idea what to do next. Dave went through 39 radiation treatments and handled the side effects like a trooper. Guess what, his PSA continued to rise. Obviously the cancer wasn't in the prostate bed, now was it? Kind of a waste of time and major bucks, wasn't it?
So....Doctor of Radiation Oncology you suggested a bone scan. Imaging showed metastasis to the hip area. You suggested radiation treatment to the hip area. Oh my. Here we go again. We asked you, "doesn't radiation cause cancer?". Your response was, "there's always a chance down the road, in maybe 50 years." Guess what doc, you were incorrect. In the past 3 years we've heard of 4 patients who developed bladder cancer from radiation treatments to the prostate bed. Dave now has microscopic blood in his urine, we'll get back to you if anything should come of this (minor issue). Fifteen treatments later PSA jumped from a 4.9 to 23.2! Are you serious? Are you doctors truly this clueless? Did you piss off the cancer? What happened?
So....you suggested a urologist to begin Hormone Therapy. It kind of felt like we were being pushed along, like we were on a conveyor belt, from one Ologist to another. Move along now....next! All the while no one really had a clue as to what was happening.
We went to visit with the Urological Oncologist. He seemed very confident as to what we should do next. He answered questions thoroughly. He gave us no misguided information and warned us about hormone resistance. We were confident this would work. Dave began Hormone Treatment. First injection was a success. Second injection wasn't. PSA began to slowly rise again. Mind you it's been three years since this roller coaster ride began. Bone scan ordered and completed. Results next week. Trust me Ologists, I will keep you posted on our journey that according to you, we shouldn't be on.
What's up doc? It would be nice if you were all on the same page. Don't sugar coat a diagnosis. We want the facts. Don't procrastinate. If we don't ask that "magical question" that you are waiting for us to ask, tell us the answer anyway. You took the oath to save lives, do your job. Thank you.
Disclaimer: This memo is not intended for all doctors, just a select few. Based on my opinion if you encounter a overly confident medical professional with an enlarged ego, seek another provider immediately.
In addition to the first urologist that performed the biopsy and diagnosed the prostate cancer, I have a message for you ... Prostate Cancer IS hereditary. So never, ever, ever tell a patient it isn't. Your lack of knowledge in genetics makes me fear for your patients lives. My husband's father died of Prostate Cancer within months of being diagnosed in 1994 because along with doctors being truly clueless back then, the PSA test wasn't even part of the yearly physical. Years later his three sons were all diagnosed with this disease within a 4 year period. Dave had the most aggressive form while the older and younger son were just treated with seeds and surgery. Obviously the bravest of the three sons had the most aggressive form of PCa. My step son had his PSA tested at age 30 for a baseline number. So Doc, this is a perfect opportunity for you to think before you speak. My step grandson is also at danger of having prostate cancer, so kindly remind men that this dreadful disease is genetic! Also, consider retirement.
Updates for Dave's journey with Prostate Cancer
4/28/11 Bone Scan revealed metastasis to spine. We will meet with the Radiation Oncologist on May 10th. We also discovered some shocking information from a new doctor. Why didn't you ever mention to us three years ago .... Dave's Gleason was 4+3 which we knew BUT what you neglected to tell us was that 5% of his cancer was a Gleason 5 which is more aggressive.
Hmmm....this doctor was curious as to why you didn't suggest radiation treatments immediately after his post-PSA went from 0.1 to 0.3. I told him that I mentioned it to you, but you thought we should have 3 PSA rises first. Next time you might want to recommend differently. Patients might not have went to medical school, but we actually have more common sense then you might think. A framed piece of paper displayed on your office wall doesn't make you a genius, it makes you a human who is licensed to make mistakes. It's because of this the 39 rad treatments to the prostate bed Dave were pointless. You had us wait to long and we trusted you.
5/11/11 Radiation Oncologist notified us there is a tumor in the area. He suggested 10 external beam radiation treatments to the spine. CT-Scan tomorrow. Treatments begin next week.
6/3/11 Radiation Treatments are complete. PSA test to follow in 6 weeks.
7/15/11 PSA 59.1 .... this is not a typo. We are still in shock how a cancer could get caught "so early" and still be so out of control.
8/4/11 PSA 98.7 ... THIS IS NOT A TYPO. We found out today from our new oncologist that our urologist neglected to tell us the accurate PSA of 98.7. How does a doctor looking at your chart not share with you your own PSA of the test that he ordered? He told us the PSA of the test the previous oncologist ordered which was 3 weeks earlier! So Dave's PSA went from 59.1 to 98.7 in three weeks! The NEW oncologist also suggested against everything the urologist suggested! Why can't these doctors work together and figure out the best game plan and stop using their patients as guinea pigs? Very aggravating.
The urologist also neglected to tell us about lesions on Dave's lungs for a CT SCAN that he ordered, but the Oncologist spotted them immediately on the scan! Repeat CT Scan in 2 weeks and then decide on the next move. Chemo, Provenge, Zytiga.... the list goes on. Yes, I made the urologist aware of his mistake. We have to be our own advocates and always right a wrong! Update: The wrong has been righted. Urologist just phoned me, his staff never entered the latest PSA in Dave's file and the suspicious spots on the lungs weren't in his files either. Clerical error.....at least we found out. Everything happens for a reason which is why we heard this info from the oncologist and not the urologist. Began Xgeva injections for bone strength.
8/26/11 Results of CT Scan was fine. Second Xgeva Injection. PSA is now 189 .... Provenge treatment to begin soon. Dave and I have both decided that PSA is irrelevant at this point. We will no longer allow those numbers to control us. Dave feels great. No issues. He works 40 hours a week and loves life. He's a fighter and my hero.
9/23/11 Third Xgeva injection.
10/11/11 Still waiting for Provenge Treatment to start. It's been a LONG wait. Dave has more back pain, less of an appetite (which is shocking), food taste different, more fatigue. Cancer is on the move, I wish the oncologist moved also!
10/20/11 Provenge Treatment will begin on October 28th at the blood bank for the leukapheresis, followed by the infusion on the 31st at the oncologist. I was tired of waiting for the oncologist office to send us a schedule and I went straight to the top! I was in contact with the Chief Medical Officer of Dendreon the manufacturer of the Provenge Vaccine and he had a schedule for us within hours, not months. Thank you Mark and Beth! Dave has lost 9 lbs in the past 3 months. His loss of muscle mass is obvious to me. Fourth Xgeva injection was today. MRI for back pain is scheduled for next week.
10/28/11 Provenge Treatment has begun. Leukapheresis process went smoothly (4 hours from start to finish) as did Provenge therapy (3 hours start to finish) on 10/31/11.
11/4/11 Visit to the oncologist. MRI results were good. Weight is steady. Appetite is back to normal due to taking Megestrol which helps increase appetite. PSA is now 559. Wow! Testosterone is 28. Up from August when it was 18. Hemoglobin is 8.2 down from 9.2 one week ago. This is a dangerous level and could cause a stroke or heart failure. Blood transfusion is set for Sunday at 8:30. We were warned that the leukapheresis process could weaken hemoglobin levels and as we all know so does cancer. Oncologist suggests we begin Eligard again. YA THINK? I thought we should have 2 months ago, but what do I know since I didn't go to Medical School. Injection is scheduled for Nov. 8th.
11/6/11 Blood transfusion was today. It went smoothly. We did the Type & Cross on Friday and it did save us some wait time at the hospital today. Transfusion took 6 hours for two pints of blood. Dave is tired from the treatment but feels good otherwise. At this time I would like to do a shout-out to the nurses and staff at Florida Hospital Cancer Institute. Their kind hearts, patience and caring ways to the patients and their family members goes above and beyond. I commend them for their hard word and dedication.
11/11/11 and 11/14/11 2nd Leukopherisis and Provenge Treatment.
11/17/11 - Oncology appt. Hemoglobin is 10.6! Great news! Weight is stable! Xgeva injection.
11/25 and 11/28/11 3rd and final Leukapheresis and Provenge Treatment. Except for the one blood transfusion the Provenge treatment went smoothly. No problems. We won't know if it was successful for a few weeks.
12/1/11 MRI for knee pain. Results were arthritis. A knee replacement is needed at a future date.
12/16/11 FIRST PSA since Provenge treatment. Results 323 which is superb considering that his pre-Provenge PSA was 559 and his oncologist repeatedly warned us NOT TO PANIC because the PSA will DOUBLE after Provenge! Hmmm. Still clueless I presume? We are thrilled. Hemoglobin is low at 8.6 we go for a recheck on Monday. Xgeva injection. Next oncology appt is 1/5/12 we will see what happens with chemo then.
12/19/11 Hemoglobin is 7.9
12/20/11 Blood transfusion
Cap puts up a good fight!
Prostate Cancer journey continues in 2012
1/5/12 PSA is 315 Hemoglobin is 10.9
1/26 Hemoglobin is 9.3
2/2 PSA is 302
2/10 Hemoglobin 8.3
2/16 Blood transfusion.
3/19 PSA is 384 and Hemoglobin is 8.3 Potassium levels are also up.
Another new treatment begins today. Zytiga along with prednisone. Normally after the Provenge treatment steroids should not be used for at least a year. Under Dave's circumstance he doesn't have a choice. So we will never really know if Provenge was a success. We do know that it lowered his PSA for only three months.
3/22 CT Scan - Chest
3/23 Bone Scan
3/29 Hemoglobin 8.7
4/6 Multiple X-Rays to hip, spine, shoulders
4/13 X-Rays show activity in areas, not sure if it's Provenge or Zytiga in action or cancer mets. Hemoglobin 7.0
4/14 Blood Transfusion. 3 units needed instead of the usual 2
5/4 Hemoglobin is 8.2
5/7 Procrit Injection for anemia (These injections will be performed weekly to help build up the hemoglobin)
5/10 PSA is 617
5/11 Blood Transfusion
5/21 Procrit injection
5/24 PSA 544 Hemo 9.3
5/29 Procrit injection
6/4 Procrit injection (doesn't seem to be working well)
6/8 XGeva Injection and Hemoglobin 7.9
6/9 Blood Transfusion
6/11 Hemoglobin 10.9
6/18 Bone Marrow Biopsy...Results on 7/5/12 were as expected Bone Marrow Dysplasia due to mets.
6/21 Hemoglobin 9.5 and Procrit Injection
6/29 Hemoglobin 9.3
7/5 PSA 507
7/9 Hemoglobin is 8.8 and Procrit Injection
7/16 Hemoglobin 8.2 and Procrit Injection
7/19 Blood Transfusion
7/26 Hemoglobin 9.8
8/2 Hemoglobin 8.9
8/6th, 13th, 20th - Procrit Injections
8/10 Hemoglobin 8.7 and Xgeva
8/15 Orthopedic surgeon suggested a knee replacement due to arthritic pain. Oncologist nixed the idea due to potential blood loss. I bought Dave a cane which helps reduce the pressure. He also had a steroid injection in the knee which has pacified the discomfort for now.
8/16 Hemoglobin 8.8
8/23 Hemoglobin 8.4
8/24 Blood Transfusion
8/30 Hemoglobin 10.2
9/7 Hemoglobin 9.0 ~ PSA 732 ~ Zytiga is no longer working. Next step is chemotherapy with Taxotere. 3 weeks on, for one treatment a week and then one week off. Repeat as often as needed.
9/10 Procedure to insert chemo port went smoothly. The port is the size of a quarter and could now be used for chemo, blood transfusions and IV antibiotics if ever needed. It took me about 7 hours today to finally schedule an initial chemo appt. for Wednesday. All I can say is never, ever, ever give up.
9/12 Initial Taxotere treatment went OK. Received Procrit injection. Tested hemoglobin which was low as I suspected. 8.0
9/13 Blood Transfusion
9/19 Taxotere treatment went smoothly. No side effects as of yet. Hemoglobin is 9.6 and platelets are low at 33. Benadryl and Decradon are administered via an IV. 20 minutes for each followed by 60 minutes for Taxotere. Received a Procrit injection.
9/26 Third Taxotere treatment. Side effects are a bit of tingling in fingertips, fatigue and slightly, slurred speech? Has anyone experienced this with Taxotere? Hemoglobin is 8.9 and platelets are 28.
9/27 Visit with Oncologist. PSA is 842. Doc is optimistic that PSA will drop soon. We hope so! CT Brain Scan is scheduled for Monday to be sure there is no mets to the brain due to the slurred speech. Weight is steady. Dave is tired. His bum knee is his worst complaint. He's a trooper.
10/1 CT Scan revealed mets to the Dura. The brain barrier. He was now part of the 1% of men who had brain mets involvement due to the relentless prostate cancer. They are pushing on the right side of his brain causing the slurring of words. The scan was at 4:00 and the oncologist phoned us at 5:00. WOW talk about panic when a doctor calls you that quickly! We now need an MRI and 10 doses of radiation. The rads is subject to the Radiation Oncologist meeting sometime this week. The Taxotere chemo treatments will not help the mets since supposedly chemo doesn't penetrate the brain due to it's ability to fight against toxins. We keep on learning and keep on fighting.
10/5 CBC revealed that hemoglobin is holding steady at 8.9 and the platelet count is higher, 28 last week to 40 this week. That's very good news. At this point we will take ANY good news we could get. PSA test was given. Will know the results next week. We also had an MRI test performed for the brain. We will know those results on Tuesday when we see the Radiation Oncologist. Procrit injections have changed from 20K to 40K. Why this wasn't done sooner we don't know. We can't help but wonder if Dave didn't ask the oncologist if slurring of words could be a possible side effect of Taxotere when they would have scheduled another MRI. We need to be our own advocate. I don't know how many times I must repeat that. We must insist on tests, question the "professionals" and never take NO for an answer.
10/8 Dave began Short Term Disability. Chemo is kicking his butt. His energy is low, but his strength is to be admired.
Ten Foods That Could Prevent Prostate Cancer
- Green Tea
- Pomegranate juice
- Licorice Root
The floor caved in under our feet once again...
10/9 PSA is now 1336 (WTF!)
Once again we did as we were told to do. On Oct. 1 one hour after having the CT Scan our oncologist's assistant phoned us to make us aware that a lesion was discovered on the right temple of the dura, not the brain, not the skull ... the dura (a layer of tissue that surrounds the brain, just inside the actual bones that comprise the skull). We were told to schedule an MRI and visit with the Radiation Oncologist. This is what we were told. We did what we were told SINCE the doctors know what they are talking about and of course we trust them. Right? WRONG!
Today we visited with the Radiation Oncologist to discuss treatment to the lesion on the dura near the right temple. Right? WRONG! We were told that the ENTIRE dura was effected and thickened. We were also told that there are FOUR tumors within the brain. WTF? We were so not prepared for this. Neither was our RAD ONC who was also a bit taken aback that we were not told by our oncologist. During our five year journey this doctor is the only one we ever truly trusted, from the start he told us like it is. He had tears in his eyes, but he held tough. We thought surely this was a mistake since this grim diagnosis only affects 1% of men with advanced prostate cancer. If the ONC had paid closer attention to Dave's medical history he would have suggested an MRI sooner.
Why didn't he? Because in the studies performed to men with Dural Metastasis they had 1- previous spinal mets, 2- they were hormone resistant and 3- their PSA continued to rise despite treatments. There you go, it's that simple Dave qualifies for all three. If the ONC had taken a few minutes to stop and think possibly the Dural Mets could have been prevented. Yet, the clueless doctors failed him once again.
The plan is to continue with chemo that does absolutely nothing for the brain. We are scheduled for radiation planning to begin ten treatments to the brain. There is no cure. Only slowing down of the mets. Dave's cancer is rare. There are no two cancers alike. This mets via the blood stream to the brain could have happened in one month (per Rad ONC) or has been going on for six months (per ONC). There is no way to tell. Since Dave had no symptoms, an MRI was never ordered. The most common symptoms are lower back pain, seizures or headaches.
If Dave didn't mention his slurred speech he would have been dead within 2-3 months. Having rad treatments will give him 4-10 months. Possibly a year or two. We do not know. He's a fighter. He continues to fight. He says he's fighting for me. I suggest he doesn't. He refuses. Bless his heart.
After we received the dreadful diagnosis I texted our Triage nurse that our oncologist failed us. Within 30 minutes our oncologist phones us. He's upset, I'm upset. We bicker back and forth. We regain our composure for Dave's sake and continue with our mission to help buy him more time. This is my news from today. I leave you with Cancer sucks and Prostate Cancer doctors are still clueless!
10/10 This morning Dave had radiation simulation. It went smoothly. 20 minutes. A mesh mask was formed for his face. During radiation which begins on Tuesday the mask will be clamped to the table so that his head doesn't move and the radiation beams hit the right target. This afternoon was Taxotere treatment #4. He lost 10 lbs and is down to 175. Hemoglobin is up to 9.2 (from 8.9) and platelets are up to 60 which is good news! We are thankful for any bit of good news we receive. He's made it 4 weeks without the need for a blood transfusion, which is more good news.
10/11 We have so many questions for the ONC, yet he's unavailable since he's on vacation. As is his assistant. Makes me feel all warm inside knowing how much certain oncologists care. I was told today of an oncologist who is part of this group who actually gives his cell phone number to his patients in case they have any questions. Bless his heart. Not sure why we never heard of him until today. For some reason Dave still respects his ONC.
10/12 Procrit Injection and once again we heard from the lab tech..."I don't understand why your physician only ordered 20,000 ml instead of 40,000 ml." I also realized today that the clogged ear feeling that Dave has been having for the past 3 weeks is most likely from the "moderate left mastoid inflammation" that is detailed on the MRI Final Report. The ear issue began a few days after the slurring of his speech. I now also remember puffiness under his left eye that came and went during the past 3 weeks. Just a few times.
A few days after Dave filed for Short Term Disability he officially retired from Winn Dixie. He rarely, if ever missed a day of work since he was 14 years old. Dave wasn't ready to retire, he enjoyed his work. He was the #1 Meat Man in Orlando for many years, no one could run a meat department like him and he wasn't going down without a fight. Yet, he only had energy for one fight at a time. Life goes on...the journey to kick cancer's ass proceeds.)
Area and percentage of involvement that mets occurs in men with advanced prostate cancer is:
1% The brain
25% The liver
50% The lungs
90% The spine
Radiation and Chemotherapy
10/16 Today was the first radiation treatment out of 9. It was originally planned for 10 treatments, but the Rad ONC upped each dosage a bit so that Dave could end his treatments on Friday the 26th instead of a Monday. His mask was adjusted and held his head in place during the treatment which lasted 10-15 minutes.
10/17 Rad number two. Chemo followed. Taxotere was dropped from 61ml to 59ml since platelet count dropped to 24 from 60 last week. Hemoglobin is 8.7. Weight is now 170. Dave noticed pitikia spots on his abdomen, could possibly be from straining due to constipation (common with chemo) or low platelets.
10/18 Rad number three and Oncology visit. I suggested we adjust meds. He was taking both Prednisone (from Zytiga days) and Dexamethason (inflammation around brain). No more prednisone. Received a script for Oxycodene, just in case he needs it, but he has no pain now. Over the counter Prilosec for stomach upset from chemo. He's developed thrush from chemo so he's now swishing around with Nystatin. Also Generlac for constipation. We also received a script for a wheelchair which is covered by insurance. Doc's explanation as to how Dave developed brain mets. People are living longer with cancer due to new medications. With resistant cancer the damn cells will still find a place to spread. There was no way to determine that Dave had brain mets because he had no symptoms. He also suggested I stop trying to find an answer because I will make myself insane. In other words, don't try to do my job. In other words, I don't want you to know more than me. I told him I actually felt sorry for him and fellow doctors because as hard as they try (most of them) to save a life, they are still so clueless. He agreed cancer knows more than they do. Cancer has a will of it's own. Cancer sucks.
10/19 Rad number four. Procrit injection. Thrush seems to be getting a bit better. Dave's rinsing with Nystatin. I also have him eating greek yogurt with live cultures. He places a tbsp of yogurt in his mouth a few times a day and allows it melt away. We also noticed edema in his feet, he's drinking more green tea and also the left side of his face is a tad bit puffy. We also ordered a wheelchair via Blue Cross Blue Shield due to his knee issue getting worse and his lack of energy due to treatments.
10/22 Rad number five.
10/23 Rad number six. Also had a visit with our Rad ONC. There is swelling in Dave's left ear which is causing the "full" feeling. Ear-drops prescribed. Most likely due to rads, even though he had the issue before rads started. Facial swelling and edema is most likely due to Dexamethasone. Will reduce to 4mgs on Thursday. Dave is tired, very tired. Not very hungry, but I'm trying my best to force feed him. Still working on the thrush issue.
10/24 Rad number seven. CBC (Complete blood count) before chemo didn't go well. Hemoglobin is 8.2 and platelets are 18. We scheduled a Blood Transfusion and Platelet Infusion for Friday 10/26. On 10/25 we scheduled a Type and Cross. Supposedly when a cancer patient has chemo and rads concurrent the platelets take a real beating as does the patient and the caregiver. Chemo proceeded as usual.
10/25 Rad number eight. Type and Cross set for tomorrow. We finally received Dave's new wheels! His wheelchair was delivered and he was attempting to pop some wheelies :)
10/26 Final radiation treatment! An MRI will be performed in 4 weeks to see how or if any progress was made to Dave's dura (brain barrier). Blood transfusion and platelet infusion went smoothly. Nurses at Florida East Hospital are so incredibly awesome! Dave is doing well besides being fatigued. His left ear still has the full feeling which makes him not hear as well, or so he says :)
Prostate Cancer journey continues
10/29 Oncology visit. Weight 167. He's lost 20 lbs in 6 weeks. Energy is very poor. Ear is still clogged. Oncologist noticed some fluid, but said to stop using the ear meds and pressure should pop on it's own. Mind you he's been complaining about his ear since Sept. 7th to the oncologist. Full feeling was off and on, it became completely blocked a few days before radiation began. All opinions are welcome if you'd had this issue before. This might seem like no big deal with everything else is body is having to endure, but I had my ear block up for 2 weeks and I know how annoying it could be. Began taking Diflucan to aid the Nystatin in ridding his body of the thrush. Began drinking Ensure to help fatten him back up.
10/31 Hemoglobin 9.3 and Platelets are 23. Weight 169.8
Labwork and PSA were performed.
11/1 I scheduled an appt with our family doctor to get his opinion on Dave's ear issue. He immediately suggested upon examination that it's a blocked Eustachian Tube and an ENT should be able to drain it. That appt I scheduled for Nov. 6.
We also received an urgent phone call from Annie our triage nurse that Dave's calcium was dangerously low at 6.3 and he need two calcium infusions immediately. We proceeded to have one done today. This procedure took 2 hours. He's now ordered to take 2400 mgs of Calcium pills a day. He was on calcium, but kind of slacked off a wee bit two weeks ago. Uh oh! Exgeva injections make the calcium levels plummet.
11/2 Calcium Infusion. Dave's new PSA is 1167. We are excited. His PSA usually doubles after radiation, we were expecting around 3000. We'll take the 1167, down from 1336. Happy weekend! Time to recoup and breathe a bit.
11/5 Oncology visit. Dave will continue on Dexamethasone to help give him an appetite. Weight is 166.
11/6 ENT visit was a success! Dr. Harrington drained and placed a tube in Dave's left ear. He's now able to hear again from both ears. There is no more annoying buzzing in his head. I'm so relieved for him and I'm glad I didn't stop at three doctors opinions at why his ear was blocked. The fourth doctor who sent us to the fifth doctor finally took care of the issue.
11/7 Chemo visit. Hemo is 8.5 and platelets are 26. Even though hemoglobin is low he can't have a blood transfusion unless he's under 8.0 due to dangers of excessive iron build-up in his system which would halt transfusions until that's treated. Asking for positive thoughts that his immune system gives his hemoglobin a natural boost. Procrit injection.
11/14 Chemo visit. Weight is up to 169. Procrit injection. Hemoglobin is low at 7.9.n
11/15 Blood transfusion. Two units.
11/19 Oncology visit. Weight is 170, which is nice news that he's gaining a bit. The oral thrush is cleared up. I give Dave 2-3 Boost drinks a day, plus his appetite is good. We had his calcium drawn on Nov 7th, but no one could find the results. Re-draw on Wednesday, hopefully the results won't get lost this time. Eligard is being placed on hold since testosterone is non-existent. The wheelchair has been a godsend. We are able to get out of the house more often for walks or shopping. Dave is doing well and getting plenty of rest. I'm going to consider getting a bit more rest also.
11/21 Chemo. Weight is 173. Hemoglobin is only 8.8 which is a bit disappointing since Dave just had a blood transfusion six days ago. His platelets went up to 32, which is good news.
Follow up MRI Brain Scan is set for 11/26. This will tell us how or if the radiation treatments were a success. We will receive the results on 11/28. I'm asking for as many positive thoughts that you could spare.
11/28 I can not begin to thank each and every one of you who continue to send us positive vibes. You amaze me with the strength of your power! We received good results today. The radiation seems to have served it's purpose which is amazing. We have a follow up scan in 2 months. Dave's hemoglobin is holding steady. His weight is now at 173. The plan is continue with Taxotere. We have no doctor visits for one week which is outstanding! Thank you again. Y'all know who you are.
12/5 Chemo and Procrit injection. Weight is 167. Hemoglobin is 8.7. Platelets are 50. The best news of all is Dave's PSA is 718. Dropped from 1167 on Oct. 31. That's outstanding! Taxotere must be working. Amen to that! Time for him to rest and for me to fatten him up a bit. Taxotere makes him very tired, but he's a trooper.
12/11 We decided upon a second opinion from the Radiation Oncologist regarding the post-MRI radiation results. He's also pleased with the outcome. The radiation will continue to kill off the cancer cells for a few more months. I asked him if he's sticking with his 4-10 months of life and that it will be the brain mets that takes Dave down. He said "Yes, due to past patients life expectancies in a similar situation." One day at a time.
12/12 Chemo. I decided to wean Dave off of Dexamethasone. His face is swollen and the Radiation Oncologist also suggested it. He was taking 4mg. a day, from today until Monday it's going to be 2mg until we see the Oncologist. Weight is up to 170. Hemoglobin is 8.3. Possible blood transfusion next week. He's feeling well. Just fatigued and tired of steroids.
12/17 Oncology appt. Hemo is 8.3. Weight is 170. Doc agreed with my decision to cut the Dexamethasone in half and just give Dave 2mg. per day instead of 4mg. MRI in 4 weeks to check progress of rads. Depending on results of MRI and next PSA we might change to Xtandi. For now we continue on the Taxotere.
12/18 Blood transfusion. 2 units.
12/19 Chemo. Hemo is 9.9. Weight is 168. Procrit injection. We are done with chemo until next year. We have no doctor visits until Dec 26th.
I thank you for following our journey this past year and for some of our dear friends the past 5 years. I hope you have learned along the way. I've heard from many people via private messages and I thank you for each of your emails and I continue to wish you all the best of health. Merry Christmas to each and every one of you.
12/26 Hemoglobin is 10.2
That's a nice way to ring in the new year. Wishing you all a happy and healthy 2013.
Dr. Carlos Alemany
A new year is upon us...
1/3 Chemo. Procrit. Weight 162. Hemo 10.1 and platelets doubled from last week to 121. There was a lot of cheering in the chemo dept. by the nurses. Rarely do they see platelets double within a week during Taxotere. The hemoglobin holding steady at 10 is great news also.
1/4 Oncology visit. Weight 166. We actually visited with our oncology assistant. She, along with Dave and I are pleased with his progress.
1/9 Chemo. Procrit. Weight 162. Hemo 9.1 and platelets are 92. PSA is 360. (Previous PSA was 718 in Nov. and 1167 in Oct.) Taxotere must be doing something right.
Dave's feeling and I quote, "not bad" ... Has fatigue, good appetite despite slight weight loss.
1/16 Chemo. Procrit injection. Weight 166. Hemoglobin 9.1 and platelets are 70.
1/17 Follow up MRI for Brain mets. Results on 1/23.
1/23 ONC visit. Weight 168. Results of MRI were "OK" as quoted by ONC. The dura seems to be thickening again, which our Rad Onc told us to expect. Activity within the brain has shrunk, which is good news. A Bone Scan is next on the list. Knee Surgery is out of the question. Dave has to deal with the pain and discomfort. With the brain issues the pain seems more tolerable. The plan is to continue with chemo. Xtandi is still on hold since PSA is lowering and he has no complaints. One day at a time...
1/30 Chemo. Procrit injection. Weight 169. Hemoglobin 9.4 and platelets are 85. PSA is 305. We like receiving good news!!
2/1 Bone Scan. Results to follow.
2/7 Results of bone scan are stable. There's been no additional mets or activity in 18 months. Hemoglobin is 10. We are now seven weeks with no blood transfusion needed.Platelets are 65. We are pleased with all results!
2/14 CBC (Complete Blood Count) Hemoglobin is 9.7 which makes this eight weeks since a blood transfusion! Great news! Platelets are 86.
2/15 Chemo. Procrit injection (since hemoglobin was under 10) This completes another cycle of Taxotere. It's been six months and this treatment seems to be working well. Next chemo is in two weeks. Oncology appt on 2/20. In the meanwhile we anticipate the birth of a new grandbaby! Lily is due any day now :)
Dave's Prostate Cancer Journey continues...
2/20/13 Oncology visit with Dr. Carlos Alemany. Dave's weight is 174 which is progress. His hemoglobin is holding steady at 9.7. Platelet count is up at 97. Testosterone is less than 2. We confirmed in person that the Bone Scan results are good with no activity in the past 18 months. The scan has actually improved from previous reports.
We discussed Dave trying Physical Therapy to help build up his muscle mass that he lost while taking Lupron. His mobility is limited due to his knee so time will tell if the therapy works or not. If only his upper body benefits that's better than nothing.
I was also curious if chemo patients had an odor. I have caught a whiff of a different type of smell since Taxotere began. I received confirmation that it does. It's not an offensive odor, but it sure isn't pleasant. Chemo excretes via the pores and bodily fluids. Supposedly, it's not dangerous to others.
Dave is going to continue with Taxotere since it seems to be working well. I asked Dr. Alemany why he administers Taxotere once a week for three weeks instead of once every three weeks. He has found that the body tolerates the drug better. Patients are receiving the same amount of medication, just spaced out to allow the body time to rest and adjust.
We had a good visit.
3/1 - Chemo. Procrit. PSA rose slightly to 312. Platelets are 89. Hemoglobin is 9.9. Weight is 172. Also on this day we were blessed with another granddaughter Lily Elle. Lily's older sister Faith is tickled pink to finally have a sibling. She is healthy with 10 fingers, 10 toes and huge brown eyes.
3/8 - Chemo. Hemoglobin is 10.6 Wow! The last time hemo was this high was almost a year ago. Platelets are 81. Weight is 174.
3/15 - Chemo. Hemoglobin is 10.3. Platelets are 101. Weight is 180. Very good! Dave's appetite is outstanding. He's feeling great. PSA rose once again to 369. Are we concerned? Yes, but remaining optimistic. To be discussed on Monday with Dr. Alemany. I haven't given a shout-out to Dr. A's Head Nurse yet. It's due. Shelley is awesome! She has so much patience for her patients! She's supportive, sincere and we'd be lost without her.
3/18 - Oncology visit went well. Weight is 183. Hemo is 10.3 and platelets are 122. Dr. A is very pleased with Dave's progress. He has decided to continue with Taxotere even though the PSA is rising. Re-check the PSA in 3 weeks. He requested a Brain MRI in early April. Restart Xgeva every 3 months. Dave has had blurry/dry eyes most likely due to Taxotere, so he'll continue to use Artificial Tears (over the counter). If PSA continues to rise we have a choice of Jevtana or Xtandi. We'll worry about that when or if the time comes.
3/19 - Physical Therapy. Today Dave was able to ride an exercise bike. Do stretches with the guidance of his therapist. A cold pack and electricity was placed on his knee for 10 minutes. He received at home exercises. We also had a walker delivered by our insurance company. Dave was able to take a short walk outdoors which was very nice.
3/28-3/29 - Labs and Chemo. Hemoglobin is 10.0 Platelets are 82 Weight is 184 and PSA is 387. Yes, PSA rose slightly once again. On May 28th we were blessed with yet another granddaughter. Emma Noelle was born. She joins her two year old twin sisters Lorelei and Mackenzie who absolutely adore her.
4/1 Brain MRI immediately followed by Physical Therapy for Dave's knee and muscle strength. He worked out hard and developed from swelling in his feet, but it's better now.
4/4 - 4/5 Hemoglobin is 9.8 Platelets are 77. Chemo treatment. We communicated with our oncologist and there will be a new game plan for treatment since the PSA is still rising. To be discussed on Monday.
4/8 - Oncology visit. Weight is 189. Hemoglobin is 10.4 and platelets are 116. These results are fantastic, yet PSA continues to slowly rise. MRI of brain was satisfactory. The brain is stable. Possible memory loss in the future due to radiation. According to our onc due to rising alkaline phosphate levels in the past 3 months, this is most likely an indicator that bone mets is slightly more active. Even though Taxotere has been a success Dave is now stopping it. The new game plan is Xtandi. Four pills a day. He is also being weaned off of Dexamethasone. No more steroids. Mostly due to eye irritation. We now close one chapter and begin another. We also discussed XL184 and Jevtana as additional treatments down the road.
4/9 Chest/Abdominal/Pelvic CT Scan. Results on 4/22. Also Dave's Short Term Disability ended. My advice to you is to purchase Long Term because one never knows when or if you might need it.
4/10 Xtandi treatment begins. 4 pills a day.
Dr. Carlos Alemany
First results after Xtandi
4/22 Oncology visit. Hemoglobin is 10.6 and platelets are 87k. Weight is 193. This is actually Dave's weight from one year ago. He's gained back all the weight he lost. His appetite is outstanding. His Alk Phos is 661. The reason this number is high could be for two reasons, one being the bone is remodeling itself or two, the cancer is infesting the bone. We are hoping for number one.
PSA is 146. It dropped 241 points since he began Xtandi, which was within 10 days. The reason most likely being is that he still has Taxotere in his system. The Xtandi and Taxotere together as a team kicked the PSA's butt. At least this is what Dr. A is suggesting. Either way that's a nice drop and we'll take it.
The CT Scan showed a couple of enlarged lymph nodes near the aorta and some fluid on the lower lobe of the right lung. Nothing to be concerned with for now.
Dave's energy is sluggish. In the past few days we noticed less pep in his step. This is most likely due to the weaning of Dexamethasone.
All in all this visit was a success. Next visit in 3 weeks.
4/25 Xgeva injection. Weight is 192.
The past few days Dave had edema. His feet, ankles and calves were swollen and he had what looked to be a red rash on his calves. No pain, not warm to the touch. I mentioned this issue to a few members of my online groups. Diuretics for 3 days was prescribed by his oncologist. This helped a bit. Compression socks were suggested by a member of a group. This seemed to work good. 12 hours on, 12 hours off. I also learned that edema is a common side effect of Xtandi. His appetite isn't as good as it was on Taxotere. He's also a bit sluggish. He lost some pep to his step.
5/6 and 5/9 Dave had two Physical Therapy appt's this week. Mike his therapist worked him hard. Dave claims the therapy is helping with his core and leg muscles, which in turn benefit his bum knee.
Physical Therapist - Mike Dodaro
Physical Therapy for Prostate Cancer and Knee Pain
5/10 Labs. Weight is 194. PSA continues to drop to 75. Hemoglobin is 10.1 and platelets are 88. Alkaline Phosphatase is lower. Xtandi seems to be working well at this point. Besides Dave being sluggish with his reflexes, walking via walker or cane, eating...he just seems to be in slow motion. I'm a very hyper, energetic person. So you could imagine how our days are :)
5/14 Oncology visit. Weight is 199. Obvious edema in legs. Continue with compression socks. 12 hours on and 12 hours off. Diuretics and potassium pills are also needed. Swelling of the legs could be due to Xtandi or low protein, doc isn't really sure, but everything else looks good. Numbers are good. Dave also received Dr. A's blessing to have knee replacement surgery. Now we need the blessing of the orthopedic surgeon. He had a chest xray today due to the slight fluid in his lungs via the CT Scan and he developed a dry cough in the past 3 weeks. The cough isn't too bad. I keep track of the coughing more than Dave does. Supposedly the chest xray should have been done after our last ONC visit, but they forgot to tell us that. Oops.
5/17 Chest Xray results were good. No new activity. Activity that was present previously is stable. Received a call from the ONC that Dave's calcium is low, so he needs to up his calcium pills to 3600 a day. Not sure why he didn't mention that at our visit on Tuesday since he was reading the lab results while we were all in the same room. Oops.
5/28 Physical Therapy. We also had a consultation with our Orthopedic Surgeon for knee replacement surgery. He also gave Dave a go ahead. Surgery is set for July 15th. Am I nervous? Heck yes! Dave's excited, yet cautious. He still has to get an OK from a cardiologist. Labs and PSA must remain stable or else the surgery is off. He also must get approval from insurance. As we all know nothing in life comes easy. In the meanwhile Dave is doing well. Very sluggish since he's been on Xtandi and no longer taking Dexamethasone. His appetite is good. He still has edema, but it's not as severe.
5/30 We had labs done today which were very good. Hemoglobin in 10.2 Platelets are 119.
6/4 Physical Therapy we also went for a consultation with the cardiologist for his "thumbs up" for knee replacement surgery. So far Dave's ticker is ticking like a Timex.
6/5 Physical Therapy.
6/7 MRI for Knee Surgery. This is needed so the hardware could be accurately made for Dave's new bionic knee.
6/10 Physical Therapy seems to be going well for Dave. He has developed strength in his core and legs.
Journey to Knee Replacement Surgery
6/11 Back to the Cardiologist for a Chemical Stress Test since Dave obviously can't do the traditional Treadmill Test.
6/12 Part 2 of the Chemical Stress Test went well. We now await results.
6/13 Back to Florida Hospital East since Dave's knee MRI scans were blurry. He had to have a CT Scan done. We also had labs drawn. Good news! PSA is down to 67. Hemoglobin remains steady at 10.2. Platelets are up to 138. Alkaline Phosphatase is lower at 421. Calcium is up since he began taking 3600 mgs four weeks ago. So far so good with knee replacement surgery.
6/14 Cardiologist is slightly concerned with Dave's coronary arteries so he is scheduled for a CCTA Scan of his arteries on 6/27. On the flip side we checked his weight today and he's at 195 lbs. Yay weight is steady. His appetite isn't great so I thought his weight would be less. Also the edema in his feet is getting better and he stopped the Lasix a couple of weeks ago. He continues to keep his feet elevated when possible.
6/18 Oncology appt. Weight is 197 lbs. We discussed lab results...good thing I brought a copy with me which was readily available. All is going well. It was a short and sweet visit. Dr. A wished Dave good luck with his knee surgery and we will see him again on 7/30.
If it's not one thing it's another...
6/25 I celebrated my 50th Birthday! We forgot about cancer for a few days (I don't believe in one day birthday celebrations) and had a good time!
6/26 Physical Therapy - Dave's therapy went smoothly today. Maybe it's because he's been doing more exercise at home or it's his awesome therapist Mike at Florida East Rehab Center. I'm going to say it's a mixture of both.
6/27 Today we were scheduled for a CCTA Scan.
(Excuse my meltdown) A scan of Dave's coronary arteries because his Stress Test came back abnormal, which is common. His heart rate is too fast. I made sure he followed prep directions to a T. I was up at 4:00 a.m. to make sure we arrived on time at 7:00. Everything went smoothly UNTIL the third hour of medications were administered and they still couldn't get his heart rate lowered. We are now scheduled for another CCTA Scan at another hospital (Celebration Hospital) on next week because they have a larger machine that could take clear images even if they heart rate stays in the 90's.
During my frustration I realized that there is no doubt that cancer sucks. But, at times cancer has nothing on a bad knee. If it wasn't for his knee that was weakened due to treatments he would have been able to return to work. He would be mobile and not needing a cane, wheelchair, walker, physical therapy or surgery. His life and mine would be a bit less stressful. Yes, cancer caused his knee to deteriorate. Yes, because of cancer he couldn't have surgery sooner. But, now he can since his cancer is stable. Due to the surgery a clearance was needed by a cardiologist and an MRI. Between the Orthopedic surgeon, Cardiologist and MRI so far we've been to 8 medical visits because one thing or another wasn't up to par. And we aren't done yet. More visits coming up. So once again I need to reschedule and juggle medical appointments for next week due to crappy cancer and a dysfunctional knee.
So as I was driving home I thought about Cancer vs Bum Knee and I truly want to kick that bum knee to the curb. My meltdown is over. I feel better.
6/28 Xgeva Injection at Florida East Oncology Center
7/2 Another successful Physical Therapy session with Mike. The muscles surrounding Dave's knee are strengthening with each PT visit. Thanks to Mike and Sunshine as his trainers. Mike is much nicer than Sunshine.
7/3 Today we spent the morning at a Total Joint Replacement Preoperative Education class. Even though we don't quite yet have cardiac clearance since the CCTA Scan was now moved to July 8th we are still proceeding ahead for knee replacement surgery. The class was held at Florida East, actually by a longtime friend of mine, Sher Bent. It was very informative and we along with the other patients who attended feel more at ease now about our upcoming surgeries. If you should ever need joint replacement and are offered this class, make the time to attend.
7/8 Repeat CCTA at Celebration Hospital. We further realized that Dave indeed has a faster than average heart beat. It took two hours of medications, but the tech was finally able to get the test done. We now await results.
CT Scanner at Celebration Hospital in Orlando, Florida
The road to knee replacement surgery...
7/9 Had an appointment with an ENT today. Dave's ear had become an issue recently. He was once again having blockage in his left ear. We discovered that the tube that Dr. Harrington had placed in Dave's ear had shifted. He's all better now! Yay! I know how uncomfortable and annoying it could be having a clogged ear. I highly recommend Dr. Harrington at Orlando Ear, Nose and Throat.
We also had Physical Therapy with Mike. Dave had his re-evaluation and he passed! Yay!
Dave also received his cardiac clearance from Dr. Harris. The CCTA revealed moderate to mild blockage in one artery. An 81mg aspirin has now been added to Dave's list of meds. Also his Lipitor has been doubled. Yay for cardiac clearance!
7/10 Today we visited with Dr. McFadden, the Orthopedic Surgeon. The visit didn't start off well since the staff triple booked appointments, but it ended well. We had some questions regarding surgery answered. Most importantly I asked the doc if he felt comfortable operating on Dave due to his health condition. He said, "Yes." I said, "Good answer!" We then went to Florida East to preregister for surgery. An xray was also needed. While there we had a CBC done. Fantastic results! Hemoglobin is 11.4 and Platelets are 170. Next up is knee replacement surgery. Yay!
7/18 Dave's surgery on 7/15 was a success. He now has a brand new titanium knee! He received raving reviews from his nurses and physical therapist. He broke post-surgery records with how quickly he was walking after surgery. Cap, along with Couch Sunshine did so well we were released 24 hours earlier then usual. So we only spent two nights at Florida East. We were on a mission for a new knee. He got it. We are now home and Dave is recooperating well. He does have pain. He also has a collection of meds to help him along with his recovery. His hemoglobin dropped to 8.6, platelets dropped to 153 and hematocrit dropped to 27. A new challenge for me to bring those numbers back up! We had a traveling nurse here today and she gave his progress a "thumbs up!" A shout-out to my daughters and granddaughters who cast their sunshine before, during and after our stint in the hospital to make our transition a bit better. Thank you for all the well wishes, thoughts and prayers. They are appreciated, as are you!
7/22 ... For updates on Cap's Total Knee Replacement Surgery, just click this link. Total Knee.
From Knee Replacement we go back to fighting cancer...
7/18 Today we had a traveling nurse and physical therapist visit with Dave. They were both very impressed with his progress so soon after knee replacement surgery! Go Cap!
7/25 As Dave continues to heal from his total knee replacement, we continue with our battle against the beast. Today we had labs. PSA is up from 67 to 134. Not good news at all. Xtandi worked great for 3 months. We will find out on 7/30 what our next move is. Hgb is still low since surgery at 8.9 so a Procrit injection was administered.
7/26 During pre-op for knee surgery a nurse had asked when the last time Dave's chemo port had been accessed. We said about 3-4 months, not since his last Taxotere treatment. We were informed that a port should be flushed monthly so that when it's needed it will be functionable. No one ever informed us of this. So today we went to have Dave's port flushed at Florida Cancer Institute. It fired right up. Hopefully he won't need it soon, but if he does, it's good to go.
7/29 We had a successful visit with Dr. Alemany. Dave will continue with his Xtandi treatment for another month. We aren't going to allow a PSA rise to interfere with his rehab from Total Knee Replacement. His hgb is 9.9, hct is 30.4 and platelets are 246. His Alkaline Phosphatase is lower. All of this is good news. Dave will have a Brain MRI in 3 weeks to check if there is any new activity there. PSA check in 4 weeks. In the meanwhile he will continue to recover so he could be more mobile. We appreciate Dr. Alemany's positive outlook and attitude. We make a great team.
8/13 Follow up Brain MRI. No new activity. All is stable.
8/26 Dave and Coach Sunshine have been busy with Physical Therapy for his knee replacement for the past few weeks. All is going well. Dave is walking without any aid, but we still use the wheelchair when out and about because he tires easily and walks a bit too slow and can't seem to keep up with me. Today we had a PSA check...good news! PSA is down 10 points to 124. Hgb is 10.9. Labs were all good. We can't complain! :)
8/28 Oncology visit. All went well. Dave is staying on Xtandi and Dr. A has a few more tricks under his sleeve in case Xtandi stops working. We got the go ahead for Dave to have cataract surgery. We found out last week that he has two cataracts in one eye. One of them were caused by chemo. The eye doctor was sure of this.
9/10 Today Dave graduated Outpatient Physical Therapy for his knee. He actually finished ahead of his class :) in 5 weeks instead of 8 as ordered by his Orthopedic Surgeon. He was also released from his Orthopedic Surgeon with a follow up visit in one year. Great news! We also went to meet with an Opthamologist for cataract surgery. We found out via this visit that the cataracts in BOTH eyes were brought upon by Prednisone. In other words the pill from hell.
9/11 Labs - Hgb 11.8 / Hematocrit 36.2 / Platelets 222 / Weight 190
Prostate Cancer journey continues...
9/25 Dave had cataract surgery today for his right eye. He has cataracts in both eyes, but his right eye was in worse condition. Surgery went well. He could now see more clearly.
9/26 PSA is now 176. We have now discovered, yet not confirmed that surgery does compromise the immune system and will most likely increase the PSA. Surgery does possibly allow the cancer to take control again. This could continue for 6 weeks and then PSA will hopefully drop again. This is a guessing game. No one could confirm this. I'm basing my information on what we've heard from the oncologist. What I've read from first hand stories in cancer groups. We just don't know. Dave is feeling good. He has an appetite. He's able to walk more freely now due to his bionic knee. We just might put off having cataract surgery on his left eye.
10/1 PSA is now 207. We also discovered today that his testosterone level hasn't been checked in 6 months. Not good! Someone neglected to order that important test. Dave's testosterone is 25.39...up from < 2.0 in February. How frustrating. We reminded our Onc that he recommended Eligard be stopped 11 months ago because the testosterone was suppressed. Except he didn't request the levels be checked. I didn't either. I should have requested the test. I didn't. It's not my responsibility. Anyway tomorrow we have a CT Scan and Bone Scan planned. A Lupron injection on 10/4. PSA test on Monday and a follow up visit with our Onc on Tuesday.
10/8 PSA is now 210 and testosterone is 46.42. We had our oncology visit. Dr. A apologized for not keeping track of Hormone Therapy since he suggested that Dave take a rest. He received his last injection in June of 2012 (6 month injection). Testosterone is normally checked every 6 months while on HT, every month without. Dr. A assumed he was still on HT. We gave Dr. A the benefit of the doubt since the Urologist administered HT. One of the three of us should have caught on quicker that the testosterone was being neglected. Dave is going to continue with Xtandi and have labs again in 3 weeks. Visit with Onc in 4 weeks. Bone and CT Scans were actually better than the last ones. No new activity. Dave feels good. His weight is at 194.
11/9 PSA is now 320. Testosterone is less than 2. Dave has no pain. No symptoms to guide us as to why his PSA is rising. The oncologist ordered a repeat CT Scan and Brain MRI to be performed in 3-4 weeks. He'll continue with Xtandi since labs are all great. We, along with the oncologist are baffled.
Dave (Cap) continues to kick Prostate Cancer to the curb...
Nov 25 - Today Dave had the Brain MRI and abdominal CT Scan. PSA is up to 414. At least it hasn't doubled or tripled. We are thinking positive. All other labs are very good. Hemoglobin is 13.1 and Platelets are 175. Now we await the results of the scans. Dave is doing well. He has no pain, with the exception of aches and pains that we all encounter. His appetite is good. He is loving life.
I don't think I mentioned this lately, but we are so thankful for Florida East Hospital in Orlando. Literally everyone who we encounter for one reason or another has made our stressful journey much more pleasant to deal with. We laugh, chat, hug and cheer each other on. This is our hospital of choice for labs, scans and surgeries.
12/4 We received a phone call from the Onc. It seems that the cancer has spread to the liver. The brain MRI was good. New game plan coming up soon. Xtandi has come to an end.
12/9 Oncology visit which by the way was very dysfunctional. They are going to a computer system and nothing was going right. We did finally find out the new game plan which was just as we thought...Jevtana chemo, every 3 weeks. Followed by a dose of Neulasta to boost the white blood cells. This chemo should help clear up the liver mets. Dr A isn't concerned as much about the liver mets since it's two small spots. There are some lymph nodes affected in the pelvic area which should also be cleared up with Jevtana. We continue to await XL184 to be approved for Prostate Cancer in the meanwhile. Dave's weight is 194 and he's doing very well. Wish us luck for the next part of our journey.
12/11 First Jevtana infusion went smoothly. Along with chemo, pre-meds were given via IV. Benadryl, steroids and anti-nausea meds.
12/12 First Neulasta injection. So far the only side effect has been aching legs. 2 Tylenols took care of the issue. Weight is 198.
12/15 We celebrated Dave's 63rd birthday today. He had a wonderful day and is feeling fine.
Happy New Year - 2014
Dave and I are now entering our 7th year in our battle with Prostate Cancer. It continues to be one heck of a ride.
In October 2012, according to statistics, Dave was given 4-6 months to live due to brain mets.Obviously the doctor was wrong. He didn't intend to mislead us. He shared with us what was common among his patients. Yet, there were treatments that helped Dave to keep up the fight.
I am amazed at the new cancer treatments that become available at alarming rates. I'm also shocked at their hefty price tags also. It would be much better if they just develop a cure. Possibly a vaccine that could wipe out cancer altogether. I'm wishful thinking.
We continue to carry on our fight as a team into the new year. Who knows what 2014 will bring? No one does, which is why we take it "one day at a time."
Jevtana Chemo Treatment
1/2 Cap had Chemo #2 today. The treatment went smoothly. Weight is 197. His appetite is well. He likes his food! Hemoglobin is 10.9 which is awesome! Platelets are a bit low at 111, but that's common with chemo treatments. Hopefully they will pick up again soon. WBC are excellent. He does have some fatigue, which again is common.
1/3 Neulasta injection and Xgeva
1/9 Latest lab results are in: PSA is 563. Up from 414 on Nov. 25th. Dave's had 2 Jevtana treatments so far. I know Jevtana works slowly, but we didn't expect a huge rise. Anyway, we see the Onc on the 16th. I'm guessing it's the liver that's causing the issue. All other labs are good. WBC is a bit high, again I'm guessing it's due to Neulasta.
1/16 Onc Visit. Weight is 194. Dave is feeling good. He is experiencing some weakness in his legs which is most likely from his Lupron treatment. Dr. A "thinks" that the PSA rise could be from a Jevtana flare OR due to his Alkaline Phosphatase number being higher, the rise could be from bone mets activity again. We aren't sure which. His liver functions are stable so he highly doubts that the liver lesion is causing problems and he thinks that Jevtana took care of that. We go forward with one more Jevtana treatment. Then a Bone Scan and CT Scan (w/o contrast due to a rise in kidney lab results which is most likely due to Dave not consuming as much water as he normally does because he favors coffee and iced tea). Followed by a PSA check and a visit with the Onc on Feb. 7th.
1/23 Jevtana Chemo #3 along with a saline hydration (2 liters of IV saline solution) requested by Dr. A due to his previous lab results with a Creatinine level that was a tad elevated. A Lupron injection was also administered. Hemoglobin is 10.3 and platelets are 104.
1/24 Neulasta for WBC
2/3 Today Cap had his Bone and CT scans along with labs. We did learn something new today. There are two types of contrast used for the CT scan. The IV contrast is excreted via the urine and the oral contrast is mostly excreted via the stool. The reason I mention this is because Dave's oncologist didn't want him to have contrast with his CT scan, but he didn't specify which contrast, so we did no contrast at all. The scans were clear and revealed that there are/were actually 3 lesions on his liver. I say were because it looks like Jevtana killed those lesions. Which is great news! There does seem to be an issue with the kidney. Oncologist says it's not a stone. Next stop is back to the Urologist for him to check it out. PSA went down to 553 from 563. Which is a good sign. Bone scan revealed additional mets. Dave is not in bone pain, which is very good. The plan as of now is to continue with Jevtana and recheck the PSA.
If the PSA doesn't drop anymore chances are Cap will move on to Xofigo and DES. I've heard many stories about both of these drugs that frightened me. Dr. A relaxed our worries a bit. Xofigo is not the end of the road. Many men are on this drug and lead productive lives. Xofigo (Radium223) is radiation injection performed by a radiation oncologist. The drug mimics calcium and helps to build up the bone and marrow. DES (diethylstilbestrol) is a hormone treatment administered via a daily pill that's been around for many years. It did cause heart issues and pulmonary embolisms in the past, because the dosage was too high. The doctors have learned from trial and error. Unfortunately patients lost their lives while the oncologists were learning, but how else could the medical field advance without trial and error. Let's just hope for more trial.
2/13 Chemo #4. Hemoglobin was 9.5, so Dave received a Procrit injection to help boost this hemo back up. Before a Procrit injection is given the patient needs to have an Iron Panel done. There's a certain ratio the iron levels have to be, in order to be eligible for this drug. The oncologist ordered another hydration due to kidney levels being high. Hopefully once we see the Urologist on Tuesday we will finally clear up the kidney issues with a simple fix. There are such things as simple fixes, right? The hydration, which is a saline solution IV drip takes about 2 hours extra. We have another hydration scheduled for next Friday. Weekly, if needed. All other labs were good. Dave is doing well. Weight continues to be steady at 194. He has a healthy appetite. We enjoy being outdoors and soaking up the beautiful Florida sunshine.
2/14 Today was the usual, day after, Neulasta injection. Quick visit. Long enough to wish all the amazing nurses at Florida East Cancer Institute a Happy Valentine's Day.
2/21 Today was a quick visit to the Florida East Cancer Institute for an Xgeva injection. While we were there Dave had a CBC (complete blood count) and since his Hemoglobin was 9.9 he was given a Procrit injection to help boost his RBC (Red Blood Count). All other labs were good.
2/25 CT Scan of Uretha and Kidney due to slightly elevated creatinine level.
2/26 Results of CT Scan: Most likely it's a lymph node, due to PCa, that is compressing on the uretha. Dave has no symptoms, which is good. His kidneys are fine and not enlarged any longer, especially his left one. He could have a stent placed, but decided to wait on that. For the first time his spleen was a bit enlarged. Urologist had no answer as to why.
2/27 PSA is now 507, down from 553.
3/3 Oncology appointment. Weight is steady at 195. Hemo is 10.7. New game plan for chemo due to CT Scan ordered by the Urologist revealed another lesion on the liver. Obviously Jevtana is not working. Oncologist had no answer as to why his spleen is a bit enlarged. Dave was not prescribed steroids along with Jevtana, except for Decadron with chemo infusion. Oncologist said steroids weren't needed. The new chemo will be Carboplatin/Paclitaxel. Again no steroids were prescribed, except for the Decadron. I suggested Taxotere again because it worked so well, but Dr. A doesn't go backwards with treatments. Also, Taxol/Carbol is less toxic than Taxotere/Carbol. Yet, Taxol/Carbol has a side effect of Neuropathy which is a tingling of the fingers and toes, which at times could linger for months. On the flip side it looks like XL184 will be approved by May.
3/6 Dave had his first Taxol/Carbo infusion today. It went well. our Oncologist said it would be a 4 hour visit. I told him 5 because that's what scheduling had told me. Again, he said, 4. He was wrong. It was 6. Actually should have been 5, but the chemo nurse wasn't feeling up to par. Labs are usually done first, but since Dave just had labs on Monday, they weren't needed. He had 40 minutes of pre-meds...Zofran for nausea, Decadron for steroids to help aid against side effects, Pepcid for nausea and Benadryl just in case of an allergic reaction. The Taxol took 3 hours. The Carbo took one hour. Due to the "Steroid Buzz" Dave didn't sleep well and he's been a very, funny guy!
3/7 As recommended we went back 24 hours later for Neulasta. He also had a one hour hydration along with a dose of Decadron and Zofran. Cap is doing great!
3/25 So far, Dave is doing so good on Taxol/Carbo. PSA is 471. Down from 507. We are thankful for any drop in PSA we get. Labs are good. WBC, RBC are a bit low. Platetets are up. Hemoglobin is 9.4. We did go to the infusion center each Thursday for labs. Last week (3/20) his hemoglobin dropped to 9.9 so he received a Procrit injection.
3/27 Taxol/Carbo treatment #2. All went smoothly. Today's visit took 5 hours.
3/28 Today was our oncology visit. Dr. A is pleased with the progress Dave is making with his new chemo cocktail. We then proceeded to Florida East Infusion Center for Part 2 of Chemo. He had his hemoglobin checked again and it's now 8.9. Procrit was given. Along with a Neulasta shot for WBC, which seem to be doing well. Cap also had a one hour hydration.
4/4 Hemoglobin is up to 9.1 which is good news! We are dreading having to go through blood transfusions again. The transfusions were beneficial, but we prefer to avoid them when we are able to. Procrit and Neulasta injections were given. The remodeling to the Florida East Infusion Center is almost complete. Yay!
4/17 As Dave and I continue with our cancer journey, we often encounter other cancer fighters and their families. One thing that we all have in common, besides the fight, is we all haven't lost our sense of humor. We continue to remain positive and to always remember to find laughter in each and every day. Laughter is TRULY the best medicine. Today was Chemo #3 with Taxel/Carbo. Hemo was down 8.6, which is common. Taxol was reduced to 2 hours which went well. The infusion center is completed! It's spacious and very comfortable. The good news is the patients no longer have to be alone, there is a chair for one guest. Yay!
4/18 Today was a one hour hydration, along with Zofran and Decadron. Xgeva, Procrit and Neulasta injections were also given. Happy Easter weekend to all.
4/25 PSA rose to 473 from 471. We would have preferred a lower count, but we are thankful the rise was just a small bump. We never thought that numbers would control our lives so much. In the beginning of our journey PSA counts would make us a nervous wreck. Such an emotional roller coaster. As time went on, we began to realize that no matter how much we worry, the count would still be what it is. Now, instead of stressing out, we just say, "it is what it is" and hope for the best. We no longer allow numbers to control us. Labs were good, they could have been better, but hemoglobin is staying steady in the 8.8 range, Procrit was given. We carry on...
4/30 Today was Dave's monthly oncology visit. Dr. Carlos Alemany is pleased with the progress Dave is making. Even though the PSA is 473, he will continue with Carbo/Taxel.
5/8 Chemo #4. All went well.
5/29 Chemo #5. PSA is down to 328. Creatinine levels are back to normal. This tells us that Carbo/Taxel is doing some good. On the flip side, blood counts are low. Which as we all know is normal during chemo treatments. Cap is doing well. He feels good and is always thankful for another day. I'm thankful to be part of his team.
6/4 Oncology visit. Since Dave is doing well, we basically just chatted. We did find out there is a new standard to how Prostate Cancer will be treated in the beginning stages and I totally approve. I could get into the "if only" stuff, but I won't. It is what it is in Dave's case. We also found out that recommendations for Provenge will be a bit more strict...meaning, men with a low PSA and no metastatic disease will be referred to a Provenge Treatment. This makes total sense to me. The majority of men that I have been in contact with and have had Provenge and Mets, the treatment did NOT work. But they had hope. The men needed something to believe in. Never give up hope!
June 4, 2014 ... New recommendations for Prostate Cancer
- ASCO: A 'Home Run' in Prostate Cancer Tx
CHICAGO -- Overall survival in metastatic prostate cancer improved by more than a year when patients received docetaxel at the start of androgen deprivation therapy, according to trial results that on
6/12 Hemoglobin is low at 8.1 so Dave was administered another Procrit injection. This is becoming a Friday ritual, it would be nice if his hemoglobin began to rise again. Xgeva was also given, he gets this injection every other month. So many men are having dental issues and it seems like Xgeva could be the culprit. This medication plays havoc on the calcium in the bones.
6/17 PSA rose to 354. Hemoglobin is at an all time low of 7.8. Hematocrit is also low at 23.3. I contacted the Oncologist and he gave Dave clearance for chemo. He did say that if Dave should begin to feel like he needs a transfusion that he would set one up. "OK, Doc, I'll keep you posted on whether or not Dave needs one, since I am now, supposedly qualified to diagnose potential heart failure due to low hemo and hematocrit." Excuse my attitude, but I'm going through a burn-out stage. You know, when you are mentally and physically exhausted and feel like things are out of your control and you place your worries in the hands of a higher being. Yep, that's where I am, now. I also found out today that on June 4th, the Onc's office checked Dave's PSA...really? No one told us...until today. PSA was 408...Huh? In May it was 328, then 408, now it's 354. PSA seems to be having some issues of it's own.
6/19 Chemo #6 went smoothly. The steroid buzz, once again, kept him awake most of the night.
6/20 We returned for the follow-up Hydration of 500ml of Saline Solution, along with Procrit due to low hemoglobin and Neulasta to boost the white blood cells. Dave's blood pressure was a bit low today at 94/55 and his cheeks were a bit rosy, but after the treatment he began to feel better.
7/1 Oncology visit update...PSA is now 329. Dave is officially on chemo break. During the break he'll be taking DES, a hormone therapy pill, along with continuing with Lupron...the reason for the DES pill is that Lupron needs back up to keep the cancer cells from multiplying during this short hiatus. In a couple of weeks he'll need labs, CT Scans and a Bone Scan...we will then meet with our Radiation Oncologist to see if Dave qualifies for Xofigo. If he has organ mets, then that treatment is a no-go. If this happens, and his blood has recovered from chemo, he could then go back to Carbo/Taxol or try another two treatments that Dr. A has up his magical sleeve. It's not looking good for XL184 being approved at this time. Too many complications. Hemoglobin is still low at 7.9, but Dave wants to hold off on a blood transfusion because he feels good.
7/3 Dave began DES treatment. This is a compound medication that's found at specialty pharmacies only.
7/7 Hemoglobin is 7.5 ... We found out today that there are new guidelines for blood transfusions. It used to be that if hemoglobin was bordering around 8.0 a transfusion was warranted. Now protocol is for 7.0. What's the reasoning? So that patients do not build up antibodies in which case their bodies would reject new blood. Now this is not set in stone...it all depends on the health of the patient. If a patient is tired, sleeping too much, short of breath or dizzy of course they would be transfused. Dave is feeling fine. We will recheck the hemo next week.
7/14 Hemoglobin is 8.3, which is great news! We did not want to travel the blood transfusion route again.
7/18 PSA is 215, down from 329 after two weeks on DES. Yay! He had a CT and Bone Scan done. Some minor issues, but the reports seem good to us. We'll know more when we see the Onc.
7/22 Today we met with the Radiation Oncologist to discuss starting the next chapter of our journey. Xofigo is Dave's next option. There is protocol that must be met before treatment could begin. Most importantly are labs. The hemoglobin and platelets must be at a certain level. Hemoglobin is good at 8.6. Platelets are below 100k which they must be above to begin treatment. Xofigo is a radioactive injection. It's calcium to the bones to kill off cancer cells. It's given once every 3-4 weeks about 4-6 times. Labs are checked in between. The number of injections and the time in between each all depends on the lab count. If labs begin to dip, we wait until they rise again. In the meanwhile Dave continues to take DES and Lupron. Dave is doing well. His weight is steady at 196. He has no pain. He has some fatigue which is common with DES and Lupron. One thing cancer has taught us is patience, because even though we would prefer to have the upper hand, we don't, cancer does, but with patience we are still in the game and have a chance of winning. No one likes to lose, but at least we gave it our best shot.
7/28 Hemo is 8.6 and platelets are 75. We will try again next week.
8/4 Hemo is 9.9 and platelets are 91. We were so close, but still a no-go to begin Xofigo. During the last week I made sure Dave drank plenty of extra water which helps the body produce more blood cells. I'm thinking this simple task helped boost his blood count.
8/7 Monthly oncology visit went smoothly. We requested a CBC and PSA. Platelets are up to 135K, that's amazing in only 2 days. PSA is 189, which is also good news. Hopefully Dave can begin the Xofigo treatment next week. We have another CBC on Monday. I have noticed that since he began the DES treatment, he has been a bit more sluggish and his vision isn't up to par...not sure if these are side effects of DES, but I do intend to find out soon.
8/19 Hemoglobin is finally above 10 again. It's 10.5, so a Procrit injection was not needed. Great news. Unfortunately the platelets do not want to behave accordingly. They are still too low for Xofigo to begin. Chances are they will probably never be in the range required via proper protocol. Today we met with Doc Sombeck, which as always was educational and entertaining. If all doctors had his bedside manner, going to a physician would not be as bad. Anyway, back to the main topic...it looks like Dave will be trying a different treatment, which is similar to Xofigo, but it's only one injection and not six. It's an old school treatment. It's also $60,000 cheaper than Xofigo. It's called Quadramet. I'll keep you posted.
8/20 Today was a sad day. Our Team lost a good friend. Dave Dazell lost his 5.5 year Prostate Cancer battle. He will be missed by many.
8/22 Quadramet didn't work out this week. You know what they say about too many cooks in the kitchen? Yep, that happened, except nothing was spoiled, just delayed. The Oncologist requested a CBC differential test to see if the platelets were clumping and causing the platelet count to be low. He prefers Xofigo. In order to do this I had to cancel the order for Quadramet and in turn, I think annoyed the Radiation Oncologist. I don't blame him for being annoyed. But, if these two doctors who work in the same hospital, for the same cancer center, only a couple of floors apart...would just pick up the phone to discuss Dave's treatment this wouldn't have happened. It's called Teamwork, Docs! Get with the program. I should not have to be the middleman and be the bad guy who pisses people off, because in turn, I get pissed off. I am a good guy, I prefer to stay that way. In a nutshell, the test came back as not clumping. Proceed with Xofigo since the platelets are 109K - according to message from Onc. Message also said that both the Onc and Rad Onc communicated...YES...via phone! Great news! I call the Rad Onc to schedule an appt for next week. "He's off today, we will call you on Monday." We shall see what happens on Monday when we go for Dave's weekly CBC. Hopefully the platelets will still be above 100. I give up...I need a break from all the cancer drama. Happy Weekend. (I apologize for the rant).
8/28 Xofigo Treatment has finally begun...If you would like to follow our extended journey, the link is below.
9/8 PSA is 187, same as last month. Dave had Xrays done due to pain in his shoulder. Results show metastatic disease. No surprise there. Hemo and platelets are holding steady 10.9 and 99.
9/10 Today was our annual eye exam. Just as we do each year, we have our eyes checked. No big deal, right? Wrong. Not with sneaky cancer looming in the background. The optometrist spotted something suspicious behind Dave's right eye. His optic nerve looked swollen. She panicked. We didn't. I think we are panicked out. We got irritated. She set up an appointment with an Ophthalmologist.
9/12 We went to see the Ophthalmologist who specializes in the optic nerve. He was kind enough to fit us into his busy schedule. Once I mentioned Dave's history of brain mets and that he had radiation of the brain two years ago, he sent us for an MRI. We went to have the MRI after we left his office. Results coming up next week. In the meanwhile we are reconsidering keeping up with annual visits of any body part since we don't like surprises. Kidding!
9/16 Teamwork! The Ophthalmologist, Oncologist and Radiologist combined their thinking skills and came up with, we aren't sure what's going on with the Optic Nerve or if anything is going on at all. The brain is stable. No sign of cancer. Dave is having no symptoms. Next up is a consult with a Neuro Oncologist for a possible spinal tap to check the spinal fluid for possible mets. This appt is set for Sept. 25th. The same day at Xofigo #2.
9/25 Xofigo #2 is complete. Cap is glowing. Kinda. We are both sad that our Radiation Oncologist, Dr. Sombeck, that we've had since 2008 won't be there for #3, etc. He's leaving due to hospital politics. The Neuro Onc visit went well. He along with the Radiation Oncologist are pleased with the MRI results. No mets. They are assuming the issue is from possible mini strokes. Not to worry since there are no symptoms. If symptoms do begin, then he'll do a spinal tap. For now he wants a Carotid Ultrasound in 2 weeks. A brain MRI in 2 months and see him again in 2 months.
9/29 Weight is 191. Blood pressure is 107/62. Dave's BP has been running low for the past few months. We mentioned this to our Family Doctor. She suggested he take 1/2 a 25mg of Metoprolol a day instead of the usual 25mg. So far, so good! Great idea, doc!
10/1 Oncology visit. Since Dave has been having dental issues, such as two teeth literally falling out, the Onc suggested he take a 3 month break from Xgeva. Xgeva has it's pluses and it's minuses, such as it causes dental issues. Dave was also put on 30 days of antibiotics for a gum infection due to, Xgeva. I recently read that Xgeva stays in the body for up 12 years, not sure how factual that is, but if so, that's one powerful drug.
10/2 Cartoid Ultrasound. This test is short and simple. No prep is needed and it took about 10 minutes. Results were good. No sign of stenosis, which is hardening of the arteries that lead to the brain. We still don't have an answer about the mysterious "swollen optic nerve" but we don't know if we ever will have an answer. Our Family Doc told us about a patient who had a similar journey, he didn't have cancer, but not even Mayo Clinic could figure out what was causing the issue.
10/6 Labs. Hemo is 10.8, holding steady. Weight is 188. Cap needs to eat a bit more, but since his gum infection, eating isn't easy. Then he has to drink more protein. Our nurse suggested upping his calcium pills to 2400 mgs while he is on break from Xgeva. Good idea! Hmmm, wonder why the Onc didn't suggest it.
10/27 Labs are holding steady. Hemo is 10.8. Last week Dave should have had Xofigo #3, but due to the worldwide shortage because of a botched batch in the manufacturing plant in Norway, there is no Xofigo available. We continue to await Bayer to produce the treatment once again. According to studies, men could take an 8 week break...Dave is on week #5. We recently passed the 2 year mark since Dave was diagnosed with Brain Mets. His prognosis was just a few months...2 years ago. Amen.
11/6 Xofigo is back! #3 was administered today. 3 more to go. PSA is up to 334. Ugh. Weight is steady. Labs are good. Dave is feeling fine! Yay! Had our monthly oncology visit. Reduced the calcium intake to 1200. Not concerned with PSA since Xofigo was delayed. Weight is steady.
11/11 Today Dave had his Brain MRI which was ordered by the Neuro Onc, two months ago, due to the possible swelling of the optic nerve, or whatever they thought they seen...no one has figured it out yet. Reports show more decreases than increases...for that we are thankful. Follow ups are recommended.
11/13 Follow up with the Oral Surgeon. The extraction site is healing. Dentures are a no-go since the jaw and gums are just not healthy enough due to Xgeva. The doc also suggested never to use Xgeva again and to take antibiotics for one year. The oncologist has the final call.
11/14 The Oncologist called. No cancer in the brain. Yay! His concern is vascular, the blood vessels. He wants Dave to start taking baby aspirin, I told him he has been BUT I forgot to add it to the med list for the doc. Ooops. Excessive white matter is present which we knew was a side effect of the radiation, this means he will become more forgetful. We might or might not keep the appt with the Neuro Onc next week now. We will make that decision next week. He also said antibiotics for 3 months and then see the Oral Surgeon again.
11/17 We went for labs today and Dave's BP was abnormally low at 91/54 and his heart rate was 85. He also seemed a bit flush, we thought it was the cooler temps in Florida until the CBC results were done... Hemoglobin is down for the first time in a while. 9.8 and a Procrit injection was administered.
12/1 Hemoglobin is back over 10...Yay! PSA is 400...Boo! It was 334 last month. Dr Alemany ordered CT Scans of the chest/abs/pelvis to see if there is anything going on with the organs. Dave is feeling good. Xofigo #4 is this Thursday.
Ketoconazole and Prednisone
12/11 Oncology visit today. A well informed and a few tweaks kind of visit. There is mild progession of the disease. Ya think? First off, the scans were good. Lung mets and liver mets are stable, but trying to get noticed. The kidneys are the issue now. The lymph node that was causing problems last January is back in action. It's pressing on the ureter which could damage the kidneys, so a consult with the Urologist is in order. Most likely a stent will need to be placed while under anesthesia, of course!
DES has run it's course which is the reason for the PSA rise, along with the lymph node, and premature activity in the liver again. DES served it's purpose for a while,but we bid it farewell. The new drug will be Ketoconazole, pill form, along with 5mg of Prednisone. Cap isn't happy with taking the prednisone again, but he'll adjust. Our pharmacist did warn us that Ketoconazole and Lipitor do not blend well together, so Dave will be taking a break from Lipitor and Fenofibrate which is used for cholesterol. Ketoconazole is similar to Zytiga, it was the drug used prior to Zytiga being created and approved and cost of treatment to go through the roof. Ketoconazole is old school and only $10 a month with insurance. 400mg twice a day is the order for now. Ketoconazole drug does interfere with many prescription medications so it's best to take your recommended dosage two hours before or two hours after your other medications.
Finish Xofigo. There are two more injections. While the Xofigo only protects the bones and not organs or soft tissue, it's still helping with Cap's extensive bone mets. A new chemo will begin in February (or sooner if needed) called Mitoxantrone. Since Xofigo and Chemo can not go hand in hand, he must wait to finish one to start the other. This chemo could affect the heart, so the stronger the ticker, the better. An echogram is required before starting the treatment. Mitoxantrone is given every 3 weeks for 8 treatments. No more. After 4 treatments another echogram is required.
The brain is stable. No need for concern now. The brain continues to prematurely age due to the radiation. Dave is 64, but his brain is that of an 80 year old man. It's sad, but if he didn't have the radiation, he wouldn't have had an extra two years to live...so far. Rarely does a patient survive past 8 months with metastatic brain cancer. Dave's survival is a rarity.
This concludes our oncology visit from today.
12/12 The stent insertion surgery has been scheduled for 12/16. We passed on a 12/15 surgical date since that's Cap's 64th birthday and who wants to party while knocked out and wearing a surgical gown? The stent will push the lymph node out of the way and open up his Ureter which will reduce the pressure and bloating of his kidneys. Which will also help to prevent the need for dialysis in case of kidney failure. Today we had a consult with the Urologist and had lab work and an EKG done for surgical pre-registration. The stent is a metal coil, it's springy and flexible which means less discomfort. It lasts about 6 months to a year due to encrustation of the urine, the stent is then removed or replaced. It can be removed easily in the urologists office if need be.
12/15 Labs were good!
What is Creatinine?
For those of you unfamiliar with what creatinine is...this is what I have been told. Creatinine is a marker that measures the kidney function.
Like PSA is to the Prostate, creatinine is to the Kidneys. The lower the creatinine, the better which means your kidneys are functioning well, the higher, indicates that the kidneys are in distress.
To learn more about Creatinine, I found this link useful.
Ureteric Stent Procedure
12/16 The surgery went smoothly. Dr. Zamip Patel of East Orlando Urology is an excellent physician who besides having a great bedside manner is a master of his trade. If you need a Urologist for kidney stones, cancer or fertility we highly recommend him. Dave was a champion patient and is recovering well. One day at a time.
12/19 Dave had a echocardiogram today in preparation to start chemo in February. He aced his test! "30 year old men would be envious of the condition of your heart" were his test results. It's good to know that his heart is one organ that has never been an issue.
12/22 Weight is at 191. Blood pressure is normal. Hemoglobin dropped to 9.6 so a Procrit injection was administered. We have no medical appointments until 12/29. Hooray! In the meanwhile I would like to wish y'all a Peaceful Christmas season. I'm sending you positive vibes for a successful and healthy 2015.
12/29 Hemo is low at 8.6. Cap also caught a flu bug on Christmas Eve. He developed chest congestion and a cough. His legs were also very weak, which caused him to take a tumble during our lab visit at Florida East this morning. Luckily he had no injuries, except for his pride. Regardless I suggested to his Onc we reduce the Ketoconazole to 400mgs instead of 800mgs because my gut instinct is telling me that Keto could also be the culprit for his weakness. Time will tell.
12/31 Xofigo #5 was completed. While we were at the Radiation Oncologist I picked up a copy of the CMP from Monday. Creatinine is 2.32! It was 1.69 post stent surgery two weeks ago! Ferritin is 1,753! It was 923 in July and he isn't inducing excessive amounts of iron that I'm aware of. I placed a call to the Urologist and Oncologist.
Oncologist returned the phone first. Ferritin level is ok. It's due to inflammation. He suggested a two day hydration for Cap's creatinine rise at the Emergency Room since it's a holiday and basic departments of the hospitals are mostly shut down. I don't blame them! The Urologist phoned shortly afterwards. No need for hydrations, drink plenty of fluids. He also ordered a Renal Ultrasound for Monday. We went with the Urologist's suggestion. Time will tell.
1/5 PSA rose from 400 last month to 1214. Mets to the liver, once again. But thankful it's not the brain, then again we know how sneaky cancer is. I spoke with the Onc via his nurse and we had a STAT visit with the Urologist today. Onc said to stop Xofigo (ya think!) stop Ketoconozale (ya think!) and chemo is set for Jan. 19th. Continue with Prednisone. Urologist ordered a CT Scan of the liver and a Renal Isotope Scan of the kidneys. Both tests are scheduled for Friday. This old school chemo Mitoxantrone is the last treatment the Onc has for Dave. It's given 8 times or as long as his kidneys could handle the poison. We are dealing with elevated PSA, kidney issues and mets to the liver. We got this!
From the start of Xofigo I questioned the Onc about only treating the bones and not the soft tissue or organs. Supposedly that is what DES and Ketoconozale was for. Yet the PSA continued to slowly climb. Yet even though the CT Abdominal scan from December revealed activity in the liver, Xofigo #5 was still recommended. Personally I do NOT care about the bone mets. I care about the organ mets! I care about the kidneys! We live and learn. As do the Prostate Cancer doctors who continue to remain clueless.
1/9 Renal Scan. CT Abdominal and Pelvis. Cholesterol Testing. BMP labs. Results to follow...
Results are in...
1/12 For the past two weeks Dave has had unusual fatigue and lethargy and I was concerned. His hemoglobin is low at 8.5. Hematocrit is low at 26.4. He's been sighing loudly and yawning, which is unusual. Oxygen is 98%. Renal Scan revealed "Marked retention of activity in the right and left renal cortex consistent with renal failure." Needless to say we panicked and I went into overdrive to find out the answers. Not just one kidney now, but both! This is serious business! I analyzed what could have been wrong. When did symptoms start? In the past 4 weeks. He had the stent placed and the hydronephrosis was better. The lower back pain is better. Gut feeling told me to check the medications he was on that were being metabolized by the kidney. Amoxicillin screamed at me via Google! He's been on amoxicillin for the past 3 months due to ONJ of his mouth, which was caused by taking Xgeva for his bones. Wow! I stopped giving Dave Amoxicillin.
1/13 Oncology visit. He immediately suggested a stent placement? Huh? We just had that done last month. Oh. Oops. He then suggested Nephrostomy Tubes to be placed immediately to allow the kidneys to drain and rest. He said the kidney issue is due to tumors resting on the Ureters and blocking urine flow which is causing the kidneys to become blocked. We didn't support this suggestion. Dave was aware that the tubes might be needed via his Urologist but they both agreed they preferred not to use them unless absolutely needed. Onc said he will speak with the Urologist and then set up a surgery time. I mentioned the amoxicillin usage. He said that is possible, but unlikely. Really? Dr. Google says otherwise. The PSA rise is most likely due to the kidney issue. It saddens me to think how many patients take a doctors word as set in stone and do not request a second or third opinion. If an organ is causing havoc, see a specialist who specializes with that organ. Don't just assume that one doctor knows it all. If we assumed, Dave would have been admitted to the hospital yesterday and had drain bags placed today. My gut told me there was something wrong with that...to further investigate it. I noticed tonight that Dave's symptoms were improving. He hadn't sighed all day. He wasn't as fatigued. His lethargy is still a work in progress. We discussed Hospice. We are prepared for that process if need be.
1/14 Urology visit. The Onc and the Uro discussed Dave's predicament. NO drain bags, they would not help. The Ureters are not being blocked by lymph nodes. There is no staging to Dave's renal failure since it's acute and not chronic. Uro is baffled. I mentioned that he has been on Amoxicillin for the past 3 months. He was shocked that he didn't know. He then agreed that the pills could very well be causing the problem. The body heals itselfs once the toxin is removed. I told him I removed it on Sunday. Creatinine is steady for the past week in the 3's. Which is a good sign and means the kidneys are holding their own. He said it's safe to start chemo on Monday since Mitoxantrone isn't metabolized via the kidneys and should help more than hurt. Renal Stent is working well. Nephrologist is tomorrow for his opinion...
1/15 Last night we received a phone call from the hospital that Dave's bed was ready for his procedure. I told the nurse that the surgery for the Neprostomy Tubes was cancelled, we met with the Urologist and he said that Dave wouldn't benefit from the tubes and he will run a risk of infection. She thanked me for making her aware. This morning I received a phone call from the Onc's nurse that the surgery should not be cancelled and Dave should have them done. I thanked her for the message and we moved on to our next opinion. Opinion #3 from the Nephrologist went well. We learned some interesting facts about the kidneys! His opinion is the issue could be Allergic Nephritis from Amoxiciilin which is reversible and highly probable. Reaction to CT Dye which is sometimes reversible and a possibility or to a Chemo Agent which is unlikely. He did say it wasn't the Ketoconazole and all 3 physicians agreed on starting the new chemo on Monday. He ordered some labs to hopefully confirm what might have occurred. Results next week. No more hospitals or doctors for the next three days. I'm ready for a break. So is Cap. He's feeling better every day. He just might be bouncing back once again. This will be his fourth IV Chemo since 2012. This man has earned a personal visit from Captain America, if only I knew how to get in touch with him.
Mitoxatrone Chemo Treatment
1/19 Chemo has begun. Mitoxatrone is a bright blue color. For one to two days after chemo is administered the urine could be tinges of blue. Interesting, but didn't happen to Cap. I'm not sure why it's a blue color, but I do know chemo comes in a rainbow of colors, but mostly clear. Dave's hemoglobin is 7.8, hematocrit is 24.5. They haven't been this low in quite a while. Chemo was approved and a normally 2 hour visit turned into 5 hours because the wrong dosage was delivered and we had to wait two hours for a courier to deliver a corrected batch. We found ways to amuse ourselves. Luckily we don't require much entertainment. If I learned anything on this journey, I learned that Team Cap has had a lengthy, often times very trying journey...but it's never been dull. Always look for the humor, even when you want to cry. Always look for the positive, even when surrounded by negative. Always be thankful for the moment, because any thing could happen in the next moment. It use to be one day at a time for us, recently it's become one hour at a time. And we are OK with that. This chemo takes 30 minutes to administer. It's old school and was used for MS, but it has since been discovered that Advanced Prostate Cancer patients also benefit from it. It can only be used for 8 treatments, once every 3 weeks because the agents do affect the heart. Mitoxatrone was recalled recently due to a botched batch, but has since been back in action.
1/20 Neulasta and Procrit injections were administered.
1/23 Dave is feeling well. It seems like he has bounced back from the renal kidney failure. Like the Nephrologist told us, Dave will bounce back quicker than his kidneys will. He has gained strength in his legs again. The lethargy he had prior to chemo is much better. He never lost his good appetite. Weight, BP are all in range. So why is his hemoglobin and hematocrit so low. It's now 7.5 and 24.0. He is not symptomatic for a blood transfusion. There is something going on with his blood count that I can't figure out. Yet. PSA is now 1328. Creatinine is now 3.81. Oh my. We see the Nephrologist and Oncologist next week. I'm baffled, I sure they have logical reasons as to how Dave could feel so well, while his labs tell otherwise.
To the ER we go...
1/26 Today we saw the Nephrologist. The visit was quick and the doc was rude. He was running late and demanded that Dave immediately go to the ER to have his blood levels checked. I was at a loss. Dave was a bit baffled. I knew that since his potassium had risen to 5.5 and he was now in danger of heart failure and his hemoglobin was 7.5 the best place for him was the hospital.
I did my best to fix the problems, but even Sunshine needs help some times. We proceeded to the ER, which was the first time I ever was in the ER, so again this was a learning lesson for me. Dave had been a few times with bumps and bruises. I was terrified. Dave was nervous. The attending doc took some labs and decided to admit Dave. We didn't argue. They did a Potassium Cocktail to help reduce his potassium levels and after 12 hours it worked! 4.0. They checked his blood levels often.
About 3:00 am they FINALLY decided to give him a blood transfusion when his hemoglobin dropped to 6.6, hematocrit dropped to 20.4 and platelets to 33. Oh my! WHY was his blood levels dropping? Docs were clueless. Google told me it's because his kidneys were filtering his blood. Yet, they also did a Renal Ultrasound and his kidneys showed a slight improvement since the Ultrasound he had on January 5th. We were beginning to see a light at the end of the tunnel. We have not given up hope yet! Hemoglobin rose to 7.5 and hematocrit rose to 24...so we went AWOL from the hospital.
Dave is not the type of person to just sit around a hospital. The 27 hours we were there served its purpose. The admitting doctor gave her OK. We still needed the OK from the Nephrologist and Oncologist, but they were taking forever to see him. Again, no patience. When Cap wants to go home, I take him home. I also felt comfortable with his condition and gained back some control during the stay. They gave him "bandaid" treatments to help his counts, we appreciate that, but his immune system is compromised due to his condition and I did not want him leaving the hospital with something else that might kill him, we had enough to tackle. We did end up speaking with an attending Oncologist and she was OK with us leaving. Just before we were about to board the elevator, we saw our Nephrologist who was in a better mood and he wished us luck. I guess we should have thanked him for his treatment suggestions, but we didn't, yet.
They also did a Breathing Treatment with Albuterol to reduce his potassium, which was different, but possibly could have helped. We need Cap's kidneys to reverse the damage. They need to start working again, on their own. It makes my heart sad that I could not fix the renal kidney failure.
List of Things to Watch For:
Rising Potassium levels due to poor kidney function could cause heart failure
Rising Creatinine levels could cause further kidney damage
Excessive trembling of the hands means toxins are not being flushed via the kidneys and toxicity is building up
Falling Hemoglobin levels could cause uncontrollable bleeding if cut
Falling Platelet levels could cause blood not to clot and death by bleeding could occur
Lower levels of Hematocrit means not enough oxygen in the blood
1/29 Oncology visit was somber, but successful. Dr A had the QOL (Quality of Life) talk with Dave. Dave and I have had this talk many times, about stopping treatment and just enjoying what time you have left. Dave understands, but he is still in the fight and doesn't want to stop treatment unless his body tells him otherwise or there are no more options. Dave loves life. He is like an incredible machine that refuses to give in to cancer. I admire his determination to keep on fighting. Dave is my hero.
Chances are he will get worse before, or if, he gets better. Not sure. Still a guessing game. He will most likely need more blood transfusions. His kidneys might get worse before, or if, they reverse the damage. We just don't know. We will continue with labs each week and apply "bandaid" treatments if required. We are back to one day at a time instead of one hour at a time. Other ologists are on hold (as I write this) unless their services are needed (cause you just never know.) Chemo is still planned for the 9th.
I had yet another gut feeling that the baby aspirin he has been taking for the mini strokes he had due to his brain mets, could be causing the platelets to drop. I stopped the baby aspirin 4 days ago. I asked two doctors at the hospital if the aspirin could be part of the problem...they didn't think so. Today I asked the Onc, he said absolutely, stop the aspirin, I didn't know he was taking them. I reminded him that he prescribed the regimen 2 months ago. I apologized to Dave once again for trying to kill him with meds the docs tell me to give him. Dr A said today that he does not want to be the one who kills Dave by over treating him...it looks like I am beating you to that doc. Oh my. At this time Dave's daily medications are 5mgs of Prednisone, 12mgs of Metoprolol and Calcium pills. Hopefully I am done endangering his life.
2/3 Hemoglobin is at 8.0 YAY! Platelets are still low at 35. Unless they rise on their own, chemo might be halted. There is no pill or treatment to raise platelets...infusions are only given if count falls below 10.
While picking up Dave's prescription this weekend, I had a discussion with the pharmacist who asked how Dave was doing. Well, it has been a couple of months since we seen this particular pharmacist. I filled him in. I also told him about the Renal Kidney Failure. He asked if it was chronic or acute...It was at this moment that I had a revelation! The Nephrologist mentioned that he felt that the CT Dye was the culprit of the kidney failure. I can now see why! Dave's creatinine was slowly rising, but sort of stable for a period of time. Hence, placement of the Ureter Stent. Yet, afterwards his creatinine was still slowly, but steadily rising. I stopped the antibiotics and he began to bounce back from his stupor. This issue could have very well been a mixture of sorts! He was already at Chronic Kidney Disease (ongoing) from the antibiotics, etc...then had a CT scan done on Dec. 2nd and on Ketoconozale and Motrin...on Dec. 23 I began to notice there was something wrong with him which is when the Kidney issue became Acute (sudden). Are you confused yet? Yep...me too. This also explains why after some one has a CT scan and they are told to drink lots of water to rid the body of the contrast and dye that leaves through the kidneys is SO important...the longer it takes the dye/contrast to leave the body via the kidneys the more of a chance of having kidney problems! Dave doesn't drink water unless I remind him. Oh my! Drink the water people! Save your kidneys.
2/5 We picked up the CMP lab results from 2/3. Potassium is back up to 5.5 and Creatinine is 4.1. Oh my. The band aid from last week has already worn off. We haven't heard anything from the Oncologist so I was hoping that no news was good news regarding the CMP from Tuesday, but I was incorrect. I placed a call to Dr. A and left a message for him to check the Potassium levels and is there anything he could prescribe outpatient because Cap says he does not want to be inpatient ever again. This is his choice, I stand by it.
Update: Nurse has called. Hydration has been ordered for tomorrow. So again, it's the water thing...in order to lower the potassium the kidneys need more fluids and the only way for that to happen is for Dave to drink more water. Yep, more water. So simple. Yet, Dave makes it such a hassle to just drink more water. He has no problem drinking other fluids. I reckon it's a good thing I called to give the Oncologist's office a heads up on the Potassium rise. I should be getting a cut out of their paycheck.
2/9 Chemo was postponed until next week due to platelets being low at 38. On the flip side Dave's hemoglobin is 7.5 (still low, but over 7), potassium is 4.5 (in normal range) and creatinine is 3.6 (still high, but at least lower). Again, this could mean that Dave's kidneys are healing and reversing the damage. Don't know yet. Team Cap is thankful for every bit of good news we receive. We are now at one CBC and CMP at a time. We also continue with one day at a time with our journey.
I did pick up some interesting random facts regarding Neulasta and Neupogen which are injections given to help boost white blood cell counts usually when chemo is being administered. Neulasta can only be given every 21 days since it stays in the body for up to 3 weeks. The normal dosage is 6 mgs. Neupogen is excreted through the body quickly so it can be injected daily. Dosage is based on body weight. If chemo is given weekly, those patients get Neupogen (depending on their medical history/doctors orders). I also learned that Hematocrit is measured by 3x the Hemoglobin count. So, whatever your hemoglobin level is, your hematocrit will be 3x as much. This random fact isn't that exciting, but it was interesting.
2/12 We had a visit with Dr. Alemany today. It was a short and sweet visit, just to touch base and for Dr. A to see Dave in person. We learned that even if the platelets are below 50 chemo is still a go for Monday. An updated PSA check is also on the schedule for next week. Dave shared with the Onc how he fell this past week. He lost his balance in the bedroom, fell backwards and hit his back on the nightstand. He has quite a bruise, but luckily no broken bones. The bathroom sink drain has been slow to drain, Dave has been wanting to fix it, but wasn't sure he would be able to stand back up. So I fixed the sluggishness with the baking soda/vinegar trick. Anyway, when Dave had fell and while down on the floor, I mentioned that, "now that you are already down there, you could check out the bathroom drain." We laughed. Dr. A thought the story was quite hilarious too. Always find the humor!
Chemo Port Maintenance
Friendly reminder: If you have a chemo port and it is not being accessed for treatment, be sure it is flushed with heparin every 4-6 weeks.
I heard a story today of a woman who had a port and it wasn't accessed in 3 years because no one told her it needed to be.
She had to get a new port. Don't allow that to happen to you.
Mitoxatrone Chemo #2 of 10
2/16 Chemo #2 was administered. There was a slight pause in treatment as hemoglobin was 7.2, but platelets were 54. Oncologist gave the go ahead. Now for the bad news...PSA is up again, to 1640. Now for the good news...Potassium is steady at 4.4 and creatinine is creeping down to 3.06. Numbers, numbers, numbers. I never imagined life would be all about numbers.
2/23 I'm beginning to not like Mondays. I never had an issue with Mondays. I know many other people do. Even when I was a working girl, I looked forward to my work week. Lately Mondays have become a drag. Especially since Team Cap starts their week with labs. We never know what to expect or what the week will bring. Today was one of those Mondays. Hemoglobin is 6.8 which means it is time for Super Serum, aka, Blood Transfusion. It's not like this is our first rodeo. Dave has had many transfusions over the past few years. We just do not like to go backwards, only forwards. Platelets dropped also to 22. Potassium is still in range! Yay! Creatinine creeped back up a bit to 3.86. Oh well, it is always something.
2/24 One unit of Super Serum for Cap was administered at Florida Hospital East Orlando. The treatment went smoothly, no hiccups. For some reason transfusion treatments take longer than they actually should. It seems Cap's port has been giving the nurses some issues for the past couple of months. Not all nurses are familiar with how to access and de-access a chemo port. There are some tricks of the trade that work. Today wasn't one of those days. So Cap went old school and the transfusion was done via a vein. I hope one day some one has an answer for me when I ask, "Why do they call this treatment a transfusion, when it is obviously an infusion?" So far, I've received educated guesses, no confirmed answers. Moving on...Dave is thankful for his unit of blood.
If you have the opportunity to donate blood, please do so. Those who need your blood will be forever grateful.
Happy 12th Wedding Anniversary to Team Cap!
3/3 This weeks labs are in! Good news first...PSA dropped 246 points, from 1640 to 1394. WOW, that seems insane to write and call it good news, but when you have traveled the journey we have been on...it is good news. Hemoglobin is 7.2, too low, especially since he had a transfusion last week. Platelets dropped to 24K. Potassium is 5.1, slightly out of range. Creatinine is a problem. It's 5.38, higher than last week. I spoke to the Onc and he suggested we see the Nephrologist again, but so far we are opting out since he basically said there is nothing he could do due to Dave's short life expectancy. Douchebag. We haven't been back to him since he sent us to the ER. Anyway, Onc also said Cap could benefit from a hydration, which I expected was due, so tomorrow we go for a 2.5 hour hydration. Cap recently developed edema is his left ankle and foot...could be from the kidneys not functioning correctly. Will find out more on Friday when we see the Onc. As of now...we are thankful for another anniversary to celebrate. Happy 12th Wedding Anniversary to Team Cap!
3/4 Two Hour Hydration. Dave's weight is 199 due to edema in his feet. The hydrations are beneficial to help lower the creatinine and force the kidneys to do their job.
3/5 Two Hour Hydration Part II.
3/6 Today we had an Oncology visit. We continue on with using bandaids as treatments. Dr. A once again reminded Dave that if he ever wants to just "stop" the fight to make him aware of his decision. He realizes that Cap is a fighter, but Dr. A also realizes that there is just so much he could do to help in the fight. I realize that he is a doctor, not a magician. Dr. A has done well by Team Cap. He also missed a few things here and there, as did I. But as a team, we have done the best we could. Cancer just seems to have more control than we are able to be in control of. This isn't a matter of winning or losing the battle, this is about fighting with all your might and then comes acceptance. By accepting the end of a journey, you appreciate that precious time you have left even more. Not every one is blessed with being able to bid farewell at the end of life...be thankful for that special time. NOT that I am saying this is Dave's end of life...I just got lost in the moment. Chances are chemo is not going to work much longer. It is not cleaning up the cancer from his blood like it should be. But this treatment is a chance that Cap is willing to take. There is no cure for Advanced Prostate Cancer, just band-aids. OK, back to reality...Doc was concerned with the edema so he sent us for an Ultrasound of his legs. Report was good. No blood clots. He now has to use compression socks until the swelling goes down. Have you ever tried to put on compression socks? They make me swear like a trucker, such a tight fit, but they are so useful. No diuretics allowed for swelling since that could further damage his kidneys. We continue with weekly hydrations until the kidneys kick in again and the creatinine level starts to decline.
Things changed today about 3:00. When the Onc's nurse called to tell us Dave's potassium and creatinine were TOO HIGH. Onc knows we are anti-ER especially after our 27 hour stint last month, so he prescribed a laxative and we get to play ER at home. The problem was I had to call 3 pharmacies before I found one that actually had Kayexalate in stock. Supposedly it is a treatment mostly done in hospital settings. Anyway I found a pharmacy. Cap is settled in with his compression socks on (for the leg edema) and is ready to let that potassium flow.
For now...it's the weekend. Team Cap will chillax from cancer until Monday when the battle begins again.
Team Cap's Prostate Cancer Battle Continues...
3/9 Chemo Day! So we thought, but in the end it was. Hemoglobin is 6.7, dropped from 7.6 on Friday. Platelets are 22K. Had to get permission from Dr. A to resume chemo. Permission was granted. Along with 2 units of blood to be administered tomorrow. Procrit was given. Which reminds me has any one heard that Procrit feeds cancer? I recently heard this. Dr. A says he doesn't agree with the study that was done in England many years ago. Administering Procrit to cancer patients who had a hemoglobin over 15 and not giving them chemo in hopes of killing their cancer cells...that study failed. There is a chance that "some" cancer cells feed off of Procrit, but chances are better for Procrit winning the war and boosting hemo counts. Dave's weight is 200 lbs. He still has some swelling in his legs, but the swelling has gone down significantly. He is feeling fine. A bit anxious lately which is expected. I would be anxious too if all that was keeping me alive were one band-aid treatment after another. But Cap isn't ready to give in. I have suggested he do so, but he prefers not to. We aren't sure of the potassium and creatinine counts yet...will find that out tomorrow.
3/10 Potassium is down to 4.8. Creatinine is up to 6.58. Not good, not good at all. Today was the blood transfusion. 2 Units of Type A blood. Took about 5 hours for the units. 7 hours total with the access and de-access and flushing of the port. The hospital visit went well. No complications. Afterwards I pushed Dave over to the Cancer Center to have his Neulasta injection to help boost his white blood cells, which is the norm for the day after chemo. All went well until...we got home. Dave was a bit off balance and he fell. Straight down. I heard his yell coming from the bedroom. My daughter and I could NOT pick him up. I had to call my neighbor over to help. Marty had him on the chair in no time at all. I'm so thankful for the awesome neighbors we have. Always there when we need them. Dave's elbow was cut and he was bleeding! NO! We just spent 7 hours getting that blood! I was about to stop the bleeding on the elbow until...I found the blood on his knee. I was able to stop that too with a covering. Nap time for Cap. Not for Sunshine. She is not a napper. Too much energy to nap. In the meanwhile Cap is back to using the walker until he regains his balance. Also the wheelchair because by using one it reduces my stress level as I do not have to worry about cap taking a fall. We also get things done a lot quicker while out shopping. I could also park further away from our destination and I get a workout in by walking and pushing. I always plan ahead. Cap is feeling good at this point. Still has some edema. He wants to continue with treatment, per our discussion today. Until Dr. Alemany says there is nothing left...he wants to continue to fight. Oh my.
3/12 I read quite a few cancer blogs. Patients dealing with the beast and sharing their journey with others. I notice that there is humor in their blogs. I then question as to why my updates do not contain that much humor. I am a very witty person. I find humor in just about everything. Yes, even cancer. I pondered why...no humor. The lightbulb then glowed brightly above my head, it is because when I update Team Cap's journey I am usually exhausted and burnt out. That, my folks could very well be the problem. So, here I am once again, the end of the day, but not so tired or burnt out...
Today was a 2 hour hydration. Once again Cap was spoiled by the nurses, the earth angels, at Florida Hospital East Cancer Institute. A fluffy pillow, a warm blanket, a vibrating massage chair, a bottle of water while watching his favorite morning talk show host, Steve Harvey. Laughter filled our small area of the world. Who could not laugh while watching Steve?
Hydration went well. Labs were very good! Of course he did just have 2 units of blood 2 days ago. I did notice that the edema in his legs is back. He did gain 5 lbs in a couple of days. Too much water weight. "Come on kidneys, kick in and start doing your job again!" Cap is tired. I'm a bit concerned. Yet, there is just so much we could do for him. We meaning me, his oncologist, the chemo...we are now at one band-aid at a time. We hope for the best. We hope that we could enjoy a 3 day weekend and cancer doesn't ruin it by rearing its ugly head.
3/13 Well, Cancer reared it's ugly head. I emailed our Onc's nurse because I realized I didn't hear from them about the CMP labs from Thursday. I figured no news was good news. I figured wrong. I heard back and Potassium was high at 5 and Creatinine was high at 5.89. For real?? Damn you cancer. My daughter, Carissa, our chef, chauffer who gave me two cute granddaughters, picked up the script for Kayexalate to reduce the Potassium. Cap drank his dose. We waited for the potassium to flow...nothing. We waited longer...nothing. I asked if he possibly had a plug in there since the last two times he took the laxative he was flowing within a couple of hours. No plug. No flow. The next morning he told me he was up 3 times during the night to flow, but via urine. Hmmm. Interesting.
3/14 It is Saturday now, so calling the doc was a moot point. Instead I phoned the pharmacist. She said if he didn't have anything to flow out of the colon due to not eating enough or already being cleaned out...he would flow via the kidneys. She also mentioned to avoid dehydration by replacing the fluids he lost with water consumption. Ohhhhh! That makes sense. I guess. I'm new to this type of treatment. Pharmacists are much more knowledgeable about medications, even more so than doctors. They are the first ones I turn to with a question about a drug. Actually I turn to Google first, then a human. So, in a nutshell, hopefully this helped to lower his potassium. We continue on with our weekend. I hope. Not so fast...about 5pm tonight...I was close to taking Dave to the ER tonight. His left knee was swollen, both his feet were swollen, his tummy was bloated! All I could think is...Damn kidneys. I stopped and thought...the ER can't do anything for his kidneys. He is too sick for dialysis. Can not have surgery of any kind. I decided we sleep on it. Dave slept well. I got a few hours.
3/15 This morning...his edema is much better, tummy isn't bloated, he is back to his normal weight, I realized via a gut feeling that his swollen knee was due to his fall on Tuesday. He then told me that he thinks he twisted his knee when he fell. Really? You tell me this now? So much for a break from cancer this weekend. We still have today to enjoy! Amen! What a roller coaster.
3/16 Labs are in! Hemoglobin is holding steady at 8.7 Platelets are very low at 19K. Oncologist passed on a platelet infusion even though under 20K should be infused. Regardless, we understand on him passing. There are so many band-aids we could use for Cap. Good news! Weight is still normal at 195. Compression socks have been working well. Drinking a lot of fluids has had Cap almost emptying his bladder more often than I do, which is a rarity.
3/17 Hydration day! Also...CPM results. Potassium is high again...5.2. Creatinine is a bit lower at 6.45 but still too high. Oh well, we could only do so much. And that so much is what we are doing. I also realized that not only bananas and potatoes are high in potassium. Almost all foods contain potassium, but in small amounts, but if you eat too much of a food or drink you consume larger amounts of potassium. This isn't what happened in Dave's case, but I thought I would mention that tidbit of interesting information. So, I did find out that lentils are high in potassium. Really? The same lentils I have been feeding Dave to help boost his hemoglobin! Orange Juice is high in potassium. Seriously? The same OJ he likes to drink before his morning coffee! Peanut Butter is high in potassium. You have got to be kidding. Why didn't anyone tell me this? Oh well, my gut feeling finally kicked in. Dave is devastated that broccoli is also high in potassium. If you know Dave, you know that I was just being funny! He detests broccoli. Even though I have told him many times about the health benefits of broccoli being the hero against cancer. Tomatoes are also high in potassium, but Cap draws the line about taking a break from pizza night! Haha! I do not blame him.
Dreams are rare for me...
3/21 I rarely dream. If I do dream, I rarely remember it upon arising. This week has been unique with vivid dreams. I had three similar dreams this week that involved Dr. A.
Details...It is about 7:00 pm. I notice Dr. A lurking in the dark and he looks very somber. This demeanor is uncommon for Dr. A since he is almost always a ray of sunshine. In reality he is very optimistic, his smile and jovial personality lights up the room. Very rare for a doctor, especially the ones I have known. With the exception of Dr. M. Anyway, I am thinking that he lives on the opposite side of town...why is he here at my home looking so sad. I approach him, ask him what is wrong. He tells me that he heard the computer I bought from him was not working and he really wanted to fix it. He has tried to fix it before, but he doesn't think he can again. I tell him that the computer is OK and not to worry. He did his best. It is time for him to go home to his family. He then vanished. He never flashed his sensational smile in my dreams. He simply walked away, head downwards with a heavy heart.
I am not sure of the meaning behind this three-peat dream. Or if there even is a meaning. But three times for the same dream is a bit too much for me. I just might ask Dr. A this week if he could possibly move along and haunt some one else's dreams from now on. For the record...I never bought a computer from him.
In the meanwhile...Cap is doing well. We have both enjoyed the past few days away from hospital and doctors. His appetite is well. His weight is steady. Edema is about gone. Happy weekend!
3/23 Hemoglobin is steady at 8.6 and Platelets are up to 25.
3/24 Today was a 2 hour hydration. We also discovered that some one at the Cancer Center forgot to order the CMP. But, luckily they hold on to blood draws for 24 hours so a CMP was done once I reminded them of their mess up. PSA is up to 1729. Potassium is 5.1, I was hoping for lower since I omitted more foods containing potassium from Dave's diet..it was worth a try. Creatinine is down to 5.39, this is good news. He has been consuming more water which makes the kidneys work harder. GFR which I had no idea about until my friend mentioned it to me is 11, which means Kidney Failure. Which we kind of knew. Anyway the GFR is up from 9. The BUN level is down to 77. In a nutshell this is just a bunch of numbers that are good and not good. I continue to dislike numbers, I have never been a fan of them.
3/25 Today was a Ligler Reunion Day. Dave's mother and two sisters, along with their families were in town and we all met at my stepdaughters home for lunch. We had a few laughs and no tears. We had fun!
3/27 Oncology visit. Doc is pleased with Dave's appearance. He is also impressed that I haven't pushed him down a flight of stairs yet. He asked if I saw he movie Misery...I said, I hadn't. He told me no too watch it! Now I must watch it! Humor is so vital to this journey. They agreed to continue with chemo. It is a light dose and is basically just lightly putting the brakes on the cancer. There is no cure. We know this. Dave is doing well now so he wants to keep on fighting. More power to him. His hemoglobin is giving him issues due to the cancer, not the chemo...this is something Dave didn't hear the doc say a few other times, but he heard him this time. We are in agreement that it is most likely the kidneys that will take Cap down. They are slightly improving but doc doesn't think there will be a reversal of damage. We will just hope for the best. We are also in agreement that it is time to have our consultation with Hospice. It is best to do it now, then to rush into the program at the last minute. So in a nutshell...we had a productive visit. Happy weekend! Update: Hospice has called to schedule a consultation. They will be here Sunday at 9:00 am to answer any questions we have and to discuss how the program works.
Team Cap Hospice Update
Our consultation went well. The admission nurse was very informative. We talked, we laughed, we learned. Still a work in progress. Dave wants to continue with chemo. Chemo is usually a no-go once enrolled since they focus on quality of life and not aggressive treatments. Insurance also only allows so much money for the patients care. Medicare pays 100%. They are doing their homework to see if Insurance and Hospice will make an exception and allow for chemo treatments during his enrollment. We shall see. On the flip side Dave is all for Hospice care and so am I. We could always opt out at any time...not a locked in contract. That's all I have for now. Could change at any time since Brenda, the admissions nurse has called me twice since she left this morning for/with more info! Such a sweet lady...she said she has never laughed so much during a hospice consult. Team Cap aims to please!
Since the chemo Dave is on is so mild and is low in cost they might accept him. Not that we are in a hurry to enroll. They were curious if his health was declining in the past 6 months. I said if it wasn't for the darn kidney failure I would say...no decline. But he is still active, keeps up with the family and loves life. He is doing well for some one in his condition.
The hospice that we will be using is non-profit. Like I mentioned, each patient is giving a certain amount of money each month from their insurance company for hospice care. I wonder if hospice cuts corners with their care and pockets the extra cash? Hmmm. Why should they be any different than other companies that do the same? Hence, my lack of trust. On the flip side patients who do not have insurance are covered for free. That makes me happy to know that hospice will not turn them away. Amen.
3/30 Today was chemo #4 and all went well. Weight is 184. Hemo is 7.6...Uh oh, here we go again with hemoglobin dropping, it has been 3 weeks since the last blood transfusion, we hope the hemoglobin behaves for this round of chemo. Platelets are 24.
I've been thinking...Yes, I think a lot...Why does Team Cap keep fighting a battle they are most likely not going to win? Actually a battle we will not win? I am thinking it might be because we are both stubborn and we like a good challenge. As long as Cap is feeling well and is able to function and is not in any pain, why should we give up? Which is why we continue to fight. One band-aid at a time. Until Cap says...I am done.
3/31 Hydration is complete. Potassium is within range at 4.6. Great news! Creatinine continues to decline, but is still too high at 5.31. We will gladly accept the continued decline. Does this mean the kidney damage is reversing? According to the Onc...reversal is not going to happen. Only time will tell. As of now we have no more medical appointments this week. We are good with that!
Dave and I discussed the 5 stages of grief this past weekend. These are our combined thoughts.
We have both traveled through each of these stages during our journey. Some stages were more difficult to move on from. Each stage was emotionally and mentally draining. We learned something during each stage about ourselves personally and about each other. We discovered strengths that we didn't know we had. Together as a team, Team Cap has made it to Stage 5. Acceptance. I arrived first. Dave followed, slowly. We are prepared for where this journey takes us next. We are aware what the ending will be, we are realistic and optimistic. A pessimistic attitude isn't permitted along our path. We do get angry on occasion, but the anger fades away more quickly than it used to. We have learned to adjust and make the most out of the time we do have. Cancer takes away from us the things that we have no control over, but it can not take away what we do not allow. Such as our love of life, our sense of humor and reminding cancer often that it SUCKS!
4/6 One week after chemo #4 ... Hemo 7.9, Platelets 22, Potassium 4.5, Creatinine 5.2, Weight 183 ... all is well with Team Cap!
4/13 Hemo is 8.3, Platelets are 30, Potassium is 4.5, Creatinine is 4.34, Weight is 178. PSA is 1889. Uh oh! We are pleased with all the labs with the exception of the PSA.
4/17 Oncology visit with Dr. Carlos Alemany...did you expect Team Cap to use another oncologist besides the best one in Orlando? He is an excellent physician who gives his all to his patients, has an awesome bedside manner and has a huge heart. He proudly wears his emotions on his sleeves. His patients, family members, nurses and doctors only have had positive things to say about him.
Dr A suggests Dave continue with the Mitoxatrone chemo treatment, while it is not a cure, while it is not stopping the progression of the cancer, it is slowing it down. PSA is high at 1889, but Dave feels well which is what Dr A focuses on. Dave's well being. The chemo is not killing him, the chemo is helping him. We are in agreement that the Renal Kidney Failure seems like it is reversing. Dave is not out of the woods yet...baby steps. His water consumption is 3 liters a day. Shocking coming from a man who mostly drank coffee throughout the day. He craves water. Wow! Our bodies are incredible machines, they know what they want and it is up to us to accommodate their demands.
Since the kidneys might be healing we requested an extension on our July 11th deadline. ALWAYS find the humor people! ALWAYS. So now we are in the process of a possible new treatment plan. If this process works and there is a possible treatment available that would require a battle with the insurance company to OK the treatment. Insurance does not approve every treatment especially when the results of the profile reveal that the tumor is best treated with a treatment that is normally used for Breast Cancer...etc. Yep, Dr A thinks I need a new challenge by taking on the insurance company, if needed. REALLY? OK, he knows me too well. But first we need to get some tests done to see if it's possible to do. The process is titled: Molecular Profile. This process has been around for years for tumors, it is new for blood tests. We do not have high hopes. We are basically just not sitting back and allowing cancer to win since Dave is feeling well and wants to continue to fight. In the meanwhile Team Cap is helping inform other men of the dos and don'ts during their prostate cancer journey.
On the flipside, I was contacted by Bayer Healthcare to be a panel member of an upcoming Virtual Blogger Summit in early June. They are still in the planning stages of the summit. I will update when I know more. If I know more. UPDATE: Summit is set for June 1...wish me luck!
Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.
Mitoxatrone #5 of 10
4.20 Chemo #5 was administered today. Labs were all good. Hemoglobin 7.9, Platelets 32K. Testosterone was 2.5 and Lupron was given. Yet, another Procrit injection was given also due to low red blood cells. Weight is 177...holding steady. Cap is feeling good, just fatigued.
4.21 Hydration. Along with a random PSA test. I say random because he just had one last week...anyway PSA is up to 2192. Just last week it was 1889. Oh my. The good news is potassium is steady at 4.6 and creatinine continues to drop at 3.61. So glad it seems like the kidneys are beginning to reverse...so we hope. But that darn PSA is relentless.
4.27 It has been almost a week since I last posted an update. The past few months have been rough. We lived by one day at a time, one hour at a time to one minute at a time. We are now at one week at a time. I am certain that will not last long. Probably just a week. Labs were good this week. Except for hemoglobin with is 7.4 and platelets which are 19. Dave is not symptomatic so he won't be having a blood transfusion this week. He does have fatigue, but has no pain and has a fair appetite. His weight is steady at 177. Creatinine continues to drop...now to 3.0 and potassium remains at 4.6. We passed on a Hydration this week. Some how Cap seems to be drinking up to 3 liters of water a day, which is shocking, but his body seems to have adjusted to drinking water and his kidneys are thanking him for that kind gesture. We are relieved that the Renal Kidney Failure seems to be reversing. Yet, we never let our guards down. As cancer has taught us, expect the worst but hope for the best. We continue to appreciate each sunrise which means one more day of winning the war. We are also realists that know this war will one day end. The soldiers will then rest.
5.4 A new week. The plan of attack continues. Hemoglobin is 7.8. Platelets are 32. Creatinine is 2.68. GFR is 24. According to the GFR char, Dave is no longer in kidney failure, he is in Severe GFR. Miracles do happen! The renal kidney failure is reversing. I am sure of it now. I was very skeptical but not any more. This is great news for the kidneys. Now for the not so great news...PSA is up to 2391. Up 502 points in three weeks. Hydration and Procrit administered. Oncology visit this Friday. Dave is doing good. Weight is OK. Oxygen is OK.
5.8 Mitoxatrone has come to an end. Dave had 5 out of the 10 treatments, but due to rising PSA the chemo didn't do much. I mentioned during our last Oncologist visit that Dave did the Molecular Profile. Well, the results are in. He qualifies for about 8 treatments that are not, at this time, available for Prostate Cancer, but are available for other cancers. This blood test became available about 5 weeks ago. At this time the testing is being done for free. All that is required is a couple tubes of blood. Results were back in less than 3 weeks. Sounds good to us! Dave will have a MRI on Monday to check for cancer activity and then begin one chemo pill of Afinitor every other day, normally every day, but Dr A is being gentle on Dave...as we know he has been through quite a bit lately, but is one heck of a trooper! I have yet to meet a man with the strength of Cap. He is game for anything...just get 'er done continues to be his motto. Afinitor prevents the growth of cancer cells and is used to treat advanced kidney cancer, but as the blood test revealed his cancer could also be treated. This drug cost $10,000 for 28 pills. This is why there will never be a cure for cancer, there is too much money to be made. This is a sad, but true fact. There will be treatments, there will be good quality of life, but cancer patients will be dependent on treatments for survival, hence the pharma companies and medical professionals who will become richer as the little people suffer the consequences. Just my two cents before I proceed...
Dave will also go back on Casadex, every day. Remain on Prednisone. Also Allopurinol daily to prevent build up of Uric Acid which causes gout. FYI...any cancer tumors that are circulating in the body qualify for the Molecular Profiling. If tumors are visible on a scan...this blood test will be effective for the patient. This is an exciting venture for cancer treatments, but it is still new, very new...only time will tell. Before this testing it was taboo to go back on a treatment once it has been used, now it is possible. I do not fully understand how this works, but we trust Dr Alemany. He has not steered us wrong yet. Just maybe a wee bit off course. If this treatment works, we will know this by the PSA level, it will be my responsibilty to convince insurance to pay for the treatment. I do like a good challenge. We also learned today that there is now a test that will be administered to men before they start Xtandi or Zytiga that will check if they will benefit from the drug before they start it. How cool is that? That test called AR-V7 would have saved Dave from wasting time on drugs that he did not benefit from.
I will keep you posted on our latest chapter.
5.12 Labs are in. MRI is complete. I did happen to notice some slight swelling in his left ankle when he was sliding into the machine. Hmmm. Hemoglobin is low at 7.3, Platelets are 26. Potassium is 4.4, Creatinine is 2.42, GFR is 27. Weight is 173. So far, so good. MRI is another story. Dave's liver is is a hot mess. I had, yet another gut feeling that the liver was causing the PSA rise which is why I requested a scan (minus the contrast since as we know, there is a good chance that contrast could have been a contributing factor to the Renal Kidney Failure). The liver metastases is significantly worse. There are about 10 total lesions. As of 1.8.15 one lesion went from 4 cm to 15 cm. Another went from 4x2 to 7x6. Not good at all. Obviously Mitoxatrone was another useless treatment. All this chemo did was allow the cancer to cause havoc on the liver once again. We have already been down the liver road, Carbo/Taxol Chemo worked well in stunting the cancer growth in the liver. So frustrating. Yet we continue to hope that this new chemo pill does some good. Never give up hope. Cap has hopes of being alive and well on 7.11.15 to welcome our daughter Michelle and her hubby David home from their working gig in Italy.
Always have something to look forward to. It doesn't have to be something huge and expensive. Just a simple goal or task that makes your heart happy. Such as planting a small garden and watching new life take form. No matter how many twists and turns your cancer journey takes you on, you still have the upper hand. You could chose to wallow in self-pity or you could march on, chin up and take the bull by it's horn. You got this! Team Cap has got this too!
5.14 Not a typical day for Team Cap. At 12:30 am Dave woke me up when he sneezed loudly (as usual) within seconds I hear him puking! I jump out of bed and over to his side and I see red vomit! Omg...blood! He looks terrified. Within a few minutes I remembered he ate watermelon about 7ish. Thank you, Lord for reminding me. I clean him up. Clean up the mess on the carpet and we go back to bed. Not for long. We couldn't sleep because every 20-25 minutes for the next 2 hours he was getting up to pee. Lord, give me strength, I prayed. I awoke at 6:00 am. Cleaned the bedding. Cap feels fine. No issues. I re-hydrated him. We ate breakfast. Went for a short drive. Then after lunch.... He sneezed again. Then puked again. Are you kidding me? Nope. No joke. He barfed on the bedding again. LORD, GIVE ME STRENGTH! I had him take another shower and then he went to take his nap. I cleaned the bedding again. Hopefully for the last time. I do not do well on lack of sleep. I am glad that otherwise Dave is feeling fine. Except for some unusual aches in his legs that started on Monday. I just heard from Shelley, Dr. A's nurse, our earth angel and the chemo pill Afinitor is most likely the culprit of the vomiting and leg aches. Dave will now be on anti-nausea meds too, ondansetron - generic form of Zofran. We are now up to 4 pills for this treatment.
Flashback: When Dave got sick at 12:30 a.m. the moment immediately took me back to 1996 and memories of my mother...she awoke one night vomiting bile which sent her to the ER where she was diagnosed with Stage 4 Colon Cancer and given less than 6 months to live. She fought for 6 years. She was quite a champion. RIP, Mom. I acquired much of my strength and my fight for life from my stubborn and beautiful mother. This is also why I am an advocate for Colon Cancer Awareness. I lost both my mother and her mother to this dreadful disease which is preventable by having a screening. A colonoscopy is a simple procedure. Yes, simple. I have had three and I am the weird one who actually looks forward to the "Purge."
5.16 While taking a pill with the hope that it helps treat the condition, at times another pill is needed to fix what the other pill broke. Such as the case for Cap. On the flip side, we all make a choice to pop that pill. No one is forcing the medication down our throats. We realize they have side effects. This is why I feel we do not have the right to complain about the hiccups that might induce. Sure, we could whine about the side effects, but in the long run how does that help anything? We live and we learn.
Dave's new treatment has been quite a challenge. I think it has been the most difficult treatment of them all. I emphasize "think" because I can not truly remember having so many rare hiccups with a treatment. I have kept Google busy searching along with me for what the heck is going on! On Monday Dave's legs began to ache, by Friday he could barely use them. I had to help lift him out of the wheelchair and off of the toilet. Very confusing. We were told that Afinitor could cause this issue. But Google tells me it could be the Allopurinol, so since this is the weekend I made the decision to not give him Allopurinol until we have labs on Monday. I am going to request that they check his Uric Acid levels. In addition he is having uncontrollable urination! This could be due to not making it to the toilet in time due to his achy legs or possibly according to his MRI results the Urethral Stent could be malfunctioning. That result kind of confuses me since the MRI was for the liver. But isn't it ironic when you have a scan for one thing and the results find another thing. We shall see. In the meanwhile Dave is wearing big boy diapers which he finds amusing and shares jokes with our granddaughter who is also in diapers. Always find the humor! Always! I do not know what is going on in the urinary department, but if need be we have a STAT appointment with the Urologist on hold for Monday. He still has some ankle swelling that was slightly warm to the touch, so I put compression socks on him. He is a true warrior with many band aids who refuses to give up. The good news is that Dave is feeling good and hasn't barfed since his two episodes on Thursday!
5.16 continued...I am so thankful for friends who care. For family who understand what we are going through and who are there for us. I am a private person and I do not share my inner struggles with many, actually not any. I did tonight. I had an emotional breakdown and revealed to those close to me that I do have moments of weakness and it is fine to do that. People want to help, they want to be there for you. They are happy to go out of there way to just listen and to help you relax. I am thankful for those of you who are there for us. Tonight was a rough night. Dave fell and then seemed incoherent which was scary because I felt that our world was out of control. I lost it and he felt bad. In the end we laughed it off and hearing our laughter was a perfect end to an ugly day. Do not be afraid to let your guard down and reach out to those that you trust and believe care about you. We are here on earth to help others. Allow those wonderful people to help you. I am slowly, but surely learning that.
5.18 We had an usual Monday...we didn't go to the hospital for labs. Dave's legs are still not cooperating. A home healthcare nurse is supposed to come draw labs. I chatted with the Onc via his nurse, our earth angel and we are placing this treatment on hold. I still do not think this treatment is causing the problems, I think it is just bad timing. The swelling in Dave's ankle began last Monday after sitting in a wheelchair for about 4 hours. He had no swelling or issues before that besides the usual aches. Nothing out of the ordinary. Onc thinks this could be a blood clot, unlikely due to the symptoms or cellulitis or disease progression. We will know more after the labs are complete. This past weekend was a rough one. Without the help of my friend Maritza, my daughter and son in law I don't know how I would have done it! But I would have found a way. I always do, I am too stubborn not to! Dave is feeling OK, but would really like his legs back in action...and so would I.
Another 24 hour ER and Hospital Stay
5.20 Well Monday the 18th didn't end as usual as it began. The home health nurse was a no-show. They called and said they would be by on Tuesday morning, which was fine. The drama unfolded about 6:15 pm. I was helping get Dave out of his wheelchair by his waist and that did not work out too well. Maybe I didn't know my own strength or the foot rest was in the way but his right leg got caught on the edge of the foot rest and left a 5-6 inch rip in his leg. A rip so severe that I saw flesh which freaks me out! I immediately applied a compress of towels and a gauze covering and elevated his leg to stop the bleeding. I then quickly phoned my friend and my daughter for help asap while I tended to Dave who was basically in shock, he screamed when it happened and then just sat there watching the action. My friend called 911 and knowing we would be going to the ER I got Dave's and my things together for an overnight stay, even under moments of extreme stress some how I still manage to plan ahead. I figured since we were about to get a ride via ambulance we might as well have the labs done, no doubt he will need a blood transfusion too, probably some fluids...my brain was in overdrive as I was having a panic attack. The wound did not have excessively bleeding but with his history of low platelets and low hemoglobin I was not taking any chances. I am so thankful for Maritza, Carissa and my son-in-law Jon who held up Team Cap while we were falling. Also my granddaughters Lily and Faith who cheer us on.
The paramedics agreed that stitches were needed. We proceeded to the ER. Team Cap's first ambulance ride, but we didn't get to play with the siren. I rode shotgun with Joshua Ritter, an EMT who discovered just a few hours prior that he was Orange County's EMT of the Year. What an honor for us and for Joshua! Dave rode in the back on the stretcher. He took a nap. Poor guy was still in shock but he was a trooper!
We spent the next 24 hours in the hospital. The ER doc did a fantastic job at fixing Dave's wound. There wasn't much skin to help with the repair since his legs were swollen and he has thin skin, so the doctor did the best he could. There is still an opening at the top of the wound. He had 9 stitches applied while under the influence of Morphine. Oh my! We then discovered that his hemoglobin dropped to 6.7 so one unit of blood was ordered. I did finally get an answer to a question I have asked so many times but no one ever had the answer. Dr Gordon our ER Intern Doc had the answer which he truly believes is the correct answer...Why is a blood transfusion called a transfusion and not an infusion since the blood is going in? It is called a transfusion because it is being transferred from one body to another...like a transplant! NO WAY! The answer was so obvious and made perfect sense...he got a hug! Dave's platelets were good at 41, doc thought we were weird when we cheered for the 41. We told him just last week the platelets were 26 so we were thankful for 41. The doctor suggested we stay for the night. I told him we would if you have a private room in the new section of the hospital...and they did! We did not want to be sharing a room this time around with Dave's grave condition. So many questions, so much rushing around yet the ER at Florida Hospital East runs so efficiently which impresses me!
During our stay Dave had a Lasix, 2 Bolus fluids 500 cc and the unit of blood. He also had his heart scanned, an EKG, a Doppler and Doppler Scan of his legs which found no blood clots, x-rays of his legs which found no broken bones, labs done three times and a chest x-ray which found a small amount of fluid on the bottom of his lungs. Results so far are that Dave has excess fluid in his body due to Third Spacing, when fluid collects in the tissue. Eat good, reduce albumin and water consumption. For real?? I finally got him to drink water to reverse his kidney disease and now he has to cut back? Supposedly 3 liters of water is too much, he is now drinking 2 liters. No prob. Uric Acid was a bit high. B-12 was excellent.
We didn't have to go AWOL this visit, but I had to put up a fight to get tests and labs moving quickly along so we could get discharged. I did have to pull a Shirley MacLaine (hospital scene from Terms of Endearment) a couple of times, because I felt like the nurses weren't listening to what I was saying, but we eventually worked it all out. Team Cap was released at 8:00 pm. The hospital is small, not many beds...we figured why should Dave take up a bed that some one else who needs it more could be using. We were so grateful for the physicians, nurses, techs, transports and staff members who made our visit a productive one.
I now continue to try to fix Cap's leg edema with home health care which starts tomorrow.
5.22 Team Cap continues to make progress. One day at a time is the only way to get over this hiccup. Dave has not left the house in one week, with the exception of the ambulance ride and the hospital stay. He has been outdoors to enjoy the sunshine, but most of the time that is quite an ordeal.
The nurse visited yesterday. She registered him. Did wound care, which by the way is healing...no infections...yay! She heard he hadn't had a bowel movement in 5 days so she placed him on the bedside commode. Actually there were two nurses, one was in training. I noticed that he did not give them any drama...hmmm...really? My daughter and I get all the drama. I refuse to be an enabler. While I understand that Dave is in pain, has edema, has a leg wound and is on new chemo pills...I also know that if I allow him to just be bedridden he will lose all his remaining muscle function. If you do not use it, you will lose it. I did not choose to be his wife and nurse at the same time, but I have no choice. The only help I have is my daughter and son-in-law when he isn't working 12 hour days. Dave's family rarely if ever calls. It is like they are oblivious to his situation. Yes, they know what is going on. I made sure they knew. They follow my updates on Facebook. Oh well, I can not allow them to damper my determination to help Cap to the best of my ability and strength, which is actually surprising at times. Being a wife and nurse at the same time I have to be a hard ass while I am also being consoling. No one knows my husband like I do and I do know that if I enable him he will never recover and walk again. He becomes very dependent on crutches, very quickly, which is why I have to wear so many hats. The ironic thing is I only like to wear a cowboy hat, but I do function best wearing multiple hats.
Well, I picked up some pointers from the nurses. Such as to give him stool softener which I did (success today!) and that his lungs had fluid so he needed to breath into a spirometer, 10 times an hour while laying down to avoid pneumonia. They also suggested giving him 2 Tylenol 30 minutes before he gets out of bed to help alleviate the pain. The nurses at the hospital neglected to give us these three important tips.
Overall, Dave is doing well. He hasn't had a real shower in 5 days but he seems to enjoy his whore baths. But there is nothing as nice as a warm shower to make you come alive! He has a decent appetite. He enjoys watching the Mickey Mouse show with our granddaughters Faith and Lily. They make him smile and we know how important it is to smile and find humor even in the darkest situations. I understand his fear of falling. I understand his fear of pain. I take those into consideration while I help him heal.
He has to take a chemo pill one more time, on Sunday. Then on Monday the nurse visits. On Tuesday he has a PSA test...we will go from there. If his PSA isn't lowered then he might decide to just stop all treatments. We see the Oncologist next Friday. I hope a Physical Therapist stops by, since one was ordered, before Monday so that they could give Dave a pep talk, In the meanwhile I have him moving his legs while in a reclining position. I have him eating and making sure he tends to all the bodily functions. It is difficult when we take two steps forward to only take two steps back. I do not have an abundance of patience for my patient, but I am here for a reason and for that Cap is blessed. This journey continues to be challenging and enlightening.
Dave and I continue to not dwell on our unfortunate hiccups along our prostate cancer journey. We do not have pity parties. There are so many other people who have it worse than us, my heart goes out to them. Ain't nobody got time to whine and complain, we only have time to get things done.
One day at a time...
UPDATE for 5.22 Cap says that he is back! He is walking via his walker. He has showered assisted with the walker. He also wanted to let y'all know that "A good BM is euphoric and brought me back, along with my wife that refused to back down."
YAY! What a difference letting it flow has made for Dave! He feels lighter, happier and healthier which willed him back to live and gave him enthusiasm to fight on! I set three goals for him this weekend...to walk unassisted, shower assisted and get in and out of the car. Within one hour he accomplished 2 out of 3. Car is his last goal of the weekend. He never did like to-do lists, he always rushed through them just to get them over with. His legs are still slightly swollen. Still has slight pain from the edema and the wound, but he is a fighter and I am not an enabler. Quality of life is more important than just existing. I want Dave to have quality of life.
Physical Therapy for Third Spacing begins...
5.23 What is Third Spacing? Excess fluid in the tissues above the muscle area. It is when the lymphatic system gets clogged and the lymph nodes do not drain properly causing fluids to build up and back up which brings on swelling of the extremities. This disorder is not just for cancer patients. It also happens to the elderly or bedridden. This could happen just by laying down in the same position, such as in a semi-fetal position for instance that could block a lymph node in the hip area. It is not good for the body to be idle in bed and not moving around for extended periods of time. In some instances the patient has no choice. But in some cases there is a choice. Even when laying in bed and if possible there are exercises to get the muscles moving, the blood pumping and the fluids following along.
Some exercises include, for example...butt squeezes, bending the knee, leg out to the side, leg lifts, straight leg raises, ankle pumps and ankle windshields when you move the ankle side to side. These are the exercises Dave learned today with his Physical Therapist. He did very well. He also got in and out of the car with the assistance of the walker. I am so proud of him. We still have a few more steps, but in the meanwhile he is doing superb. He is eating well and gets plenty of quality rest.
Some other tips to share are: Walking is essential to help rid the swelling, muscles help pump fluid. If you have a fracture use ice, heat makes swelling more intense. When in doubt always use ice. Compression socks should be placed on the legs first thing in the morning, much easier to slide on. Raise legs above heart level while sitting to help reduce swelling. My favorite tip of mine is to "Use it or you are going to lose it!" I really should get a t-shirt with that printed on it for Dave. He is a trooper and determined to live as long as possible. Reminder...I do push Dave to do anything he isn't capable of doing. I do not force Dave to have treatments he doesn't want. I am his wife and caregiver, I offer advise.
Physical Therapy has been ordered for four weeks, twice a week. One step at a time...
Home Health Nurse Visit
5.25 Today is Memorial Day. I salute and give a shout-out to the soldiers who served our country. Your dedication to protect the good ole USA is appreciated. Thank you.
We had the Home Health Nurse visit today. What a learning lesson her visit was! First off, the leg wound is healing well. I would post a photo, but, trust me...it is not for the weak. Vitals are very good. Lungs sound clear of fluid. Yay! She made some suggestions which were interesting and I wasn't aware of them. She suggested to eat protein because that helps wounds heal faster. Meat and eggs are two good proteins. Since Dave isn't sleeping well due to having to get up to use the bathroom due to the body ridding itself of the edema and drinking 2 liters of water a day...Sandra suggested to drink the majority of the water during the day, say before 3:00 pm so that way during the night he wouldn't tinkle as much. Great idea which I will gladly start too! If the wound was infected it would smell like rotten eggs...always smell the wound dressing before applying treatment. Chances are you will smell the odor before needing to smell the gauze. Also it is wise to rest one half an hour to one hour after a meal to allow the heart to rest. Really? I did not know that the heart is doing cardio by digesting the meal. Dave always rests after a meal. Not me. My poor heart...I am hyper as heck after a meal, well, I am always hyper. I have my ticker working twice as hard. I learned a lesson. She also suggested Kegel exercises to Dave to help strengthen his bladder after the past 2 week ordeal. All in all we had an outstanding visit.
5.27 It was so nice to see the nurses again at Florida Hospital East Orlando's Cancer Institute. We just missed last week's visit, but both Dave and I said it felt like we had not been there in a month. Nothing was new there, but Team Cap was missed and we were happy to see their smiling faces. Labs were done. All were good except for the PSA. It jumped up over a 1000 points to 3367. That was hard to hear, especially after the past two weeks of hell. We were hoping for some a bit of good news with the new chemo pill Afinitor, but it is what it is. Dave tried. Together as a team we tried our best to battle the beast, but this round isn't in our favor. Dave is sad. I feel for him. He bounced back from the edema (not completely gone, but much better), nausea, a leg wound, a blood transfusion, a 24 hour stint in the hospital, no appetite and not being able to walk...he is 95% recovered and to hear that his PSA went higher was a disappointment. But, we move forward with our chins up and feet forward just like the good soldiers we are. Since the Afinitor is not working and his is a clinical study, insurance will not pay for the drug. They only pay (well, maybe pay) if the patient and doctor could prove beyond a shadow of a doubt that the clinical drug is meeting its expectations. That would be a no. Unless the Oncologist has a different opinion on Friday. We won't know more until then. At this time we are awaiting the home nurse for wound care which is looking yucky today, but the Aquacel doesn't smell like rotten eggs so that is a good sign that it isn't infected, just a healing in progress.
On the flip side...I have good news to share. Dave has always been supportive over the years and inspired me through my writing journey. His wish was to see my first published book. I made his wish come true last week and surprised him with my first proof. He was elated and had tears of joy! I was also glad the surprise was over because I had enough stress to deal with, I'm not good with keeping secrets from him. But it was worth it. Mission accomplished. Haiku by Sunshine (Linda Kaywood) is available on Amazon in paperback (my favorite) and eBook (contains photos). I suggest you purchase both. All proceeds go to fund Dave's medical bills.
Until another time, I bid you farewell.
5.29 Today was another busy day for Team Cap. We began our Friday with an early morning appointment with Dr. Alemany. The visit went well. Dave and Doc agreed to continue with Afinitor for another three weeks, doc trusts that the treatment just might help. He is truly trying his best to help Dave. One thing for sure, Dave has one heck of a team on his side. Between Dr. A, myself and the nurses and staff at Florida Hospital East Orlando, Team Cap rocks! Dr A also stated that he is treating the patient, not the number (regarding the PSA rise.) Dave is doing well, he feels wells, he looks well so why mess with his treatment. I also agree. Weight is steady. Appetite is fair. The home nurse came by today and his wound is healing, but has a long way to go due to his health condition. The Physical Therapist also came by today and together Dave and David worked on the gait and strengthening of his legs. The left foot is still swollen, which is now, according to Dr A this might be due to the lymphatic system...blocked lymph nodes in the pelvic area. Team Cap is taking this weekend off from cancer. We have earned a break.
June 2015 is upon us and Cap continues to fight...
6.1 We had a drama free weekend until Sunday afternoon when Dave told me that his leg wound was painful. On a pain scale from 1-10 with 10 being painful, he was at an 8. Hmmm. An 8 wasn't good. I gently cleaned his wound and placed new dressing on it. Pain was at a 5. Better news. Yet, he was very antsy during the evening hours when he should have been resting and I should have been too. The nurse wasn't scheduled until Tuesday, but she told me on Friday to call her with any concerns. I called her first thing this morning and she arrived within the hour. Sandra confirmed that the wound was infected, but we caught it in time. Oh my! She tended to the wound while I phoned the oncologist for a script for the antibiotics he told me he would phone in to the pharmacy on Friday for a "just in case" infection, but he had forgotten...but we got it taken care of. It is all about Teamwork! So for now the dressing will be changed every 2-3 days and we will allow the antibiotics to due their job. Dave isn't walking well due to compensating for the wound pain and I do NOT want him to go back to NOT walking due to fear of falling EVER again. Two weeks ago when we were taken by ambulance to the ER I thought Team Cap's journey was coming to a screeching halt, yet here we are two weeks later and I see progress. I see sunshine at the end of the tunnel. I realize this won't last for long, but for now, we will take it.
6.2 Lab results are in! Hemoglobin is 8.0, Platelets are 23, GFR is 28, Creatinine is 2.33...all are good news! Potassium was a bit high at 5.0. I suggested to Dave to have a bowel movement prior to labs so that his potassium would register lower, but his colon didn't adhere to my suggestion. Hopefully it will next week. Procrit was administered. It was nice to see our crew at the Cancer Center.
6.3 David, the Physical Therapist had a visit with Cap today. They worked on his gait and strengthening his muscles above his bad knee which in turn will help him walk better. If you have a bum knee, by strengthening the thigh muscles that assist with the knee's function, this will help ease the pain of the knee and help you walk a bit better. Therapy went well even though Cap's feet were swollen. Elevation, compression socks and fluids were done before and after therapy.
6.4 Nurse visit for wound care. I have not touched the dressing since Monday. Dave's pain level is better since he started the antibiotics which is good news! I do see a scab forming through the Aquacel Foam. We await the nurse...
Nurse came by to dress the wound...I almost lost my lunch. OMG! The cellulitis is making the wound look worse than it is. No, the wound is making the cellulitis look worse than it is. Either way, together they do not look good. The nurse was also a wee bit surprised by its appearance, but once she cleaned it up all was well and Cap calmed down. Haha! She stopped the medi-honey...triple antibiotic cream is now being used. She also added more visits. Another nurse will be here on Saturday. Then Monday. She was glad to see pink tissue in the wound and not black! I am a bit annoyed at myself. Why? Because I am allowing a leg wound to intimidate me. All the years of our cancer journey, I have never felt intimidated by any of the treatments, tests, procedures, until now! That annoys me! I need to get over it.
She suggested to eat more protein and drink a glass of milk a day to help heal the wound. Unfortunately so many of the foods that are high in protein are also high in potassium which he needs to eat less of due to his potassium levels. This is a ongoing battle and Team Cap has come prepared with an arsenal of wit and humor...because that is one thing that cancer can never take away from us!
Compression Socks Tip...
6.5 The physical therapy went well for Dave today. David is very patient with Dave and maybe it is them both having the same name, but they sure do have much in common and converse a lot during the work out.
6.6 Sandra, the home nurse paid a visit to check and redress the leg wound. Cellulitis is still present. The leg is red, swollen and sore. The wound looks good. Sandra taught me a cool trick for putting on compression socks...I had forgotten about the bag method until she reminded me...cut the zipper part off of a Ziploc bag, place the bag over the upper part of the foot, mainly the toes, the compression sock goes on smoother (with practice), remove bag and repeat on other foot. Obviously this only works with the open toe socks, not the dress socks. Done!
6.7 How quickly things change...I am no longer intimidated by Cap's leg wound. I changed the dressing today and while the area is still tender I felt at ease. Cap felt at ease allowing me to dress his wound. Go, Team Cap!
6.8 Effie the home nurse was here to dress the wound. She is trying a new method called Wet to Dry since there is excessive slough (dead skin cells) on the wound. With Wet to Dry gauze is soaked in a saline solution and placed on the wound and then wrapped with a dressing. the wetness helps soften and remove slough. Dressing is changed daily. He should also shower with the wound uncovered with antibacterial soap.
6.9 Today is a good news day. While hemoglobin is low at 7.5 and platelets are low at 21...Creatinine is even lower at 2.14, GFR is higher at 31 (should be over 60) and Potassium is down to 3.9 which is all excellent to hear in our battle to reverse Renal Kidney Failure that almost took Cap out. How did we reverse Renal Kidney Failure? It was so simple...Cap drank up to 3 liters or water per day to flush his kidneys and force them to work. In the meanwhile I had to reduce his potassium intake since the kidneys weren't functioning and potassium wasn't being flushed...high levels of potassium could cause heart failure. I reduced his potassium and increased his water intake. Also potassium is flushed out through the bowels, so having good bowel movements also helped lower the potassium. These methods might not work for everyone but it worked for Team Cap. WBC and RBC are low, but that is common with the Afinitor chemo pill.
Wound care...as instructed by Effie, the home nurse I redressed the leg wound. The gauze was dry and stuck to the wound so I had to soak the gauze with a saline vial it then peeled right off. This is called debridement, pulling off the old slough which allows the healthy tissue to breath and gets the gunk out. The wound looked a bit better. It enjoyed it's shower too! I then allowed it to air out before I redressed it. The cellulitis is still present, but pain is less intense. Today is also the last day of antibiotics.
6.11 Physical Therapy for Cap went well. Two more visits next week and then a reevaluation. The wound nurse paid a visit. Since it was her first visit and she wasn't aware of what the wound looked like before today, I gladly shared the many photos I have taken...from day one. She was very grateful. She is ready to change treatment again. This time Dave will be using Santyl ointment, which is a prescription and supposedly expensive, to hopefully help the wound heal. If this treatment doesn't work then she wants Dave to see a vascular doctor to make sure his circulation is OK. The wound is black and yellow which is not good especially since the photo she saw of yesterday looked better. Another tip she shared was if the gauze is stuck to the wound such as with Wet to Dry, remove the gauze in the shower. Good idea! It will come right off once wet with water and soap. One more thing I learned was about tubigrips. They are similar to compression socks, but softer, like jersey and so much easier to put on and take off. Tubigrips are to cover wounds but they also help with circulation, they just aren't as tight as compression socks. So, my theory is a man invented the compression socks and a woman invented the tubigrip. Nothing personal, just my wacky way of thinking.
6.12 I made sure all the supplies and new medication, Santyl, were in in place when Sandra, the home nurse arrived today. She gave me a step by step lesson. Detail by detail.
6.13 One detail Sandra and Theresa the wound nurse left out was what should the wound look like once the dressing is removed? And what do I do when the slough does not want to come off! 3 saline vials and a shower with antibacterial soap and a loofah wash AND what I am assuming is slough is still present. Or maybe it isn't slough. I cleaned the wound as best as I could do my ability and redressed it with the 6 steps I was taught. WOW, this wound has been QUITE a challenge. Sandra returns on Monday, until then I will continue to address this wound as instructed and most of all prevent it from becoming infected and hopefully HEAL. In the meanwhile Dave is doing well. He has no complaints. But I do since he isn't eating as well as he should be. One day at a time.
Letter to Cancer by Linda Kaywood - I created this book to help inspire others in their battle. It is a small book, pocket size, which I designed so that it ca
- Letter to Cancer - Lessons Learned: Linda Kaywood: 9781514157312: Amazon.com: Books
Letter to Cancer - Lessons Learned [Linda Kaywood] on Amazon.com. *FREE* shipping on qualifying offers. I wrote this letter to cancer for therapeutic reasons and to also tell cancer that it sucks. I have learned many lessons during my cancer journeys
6.16 Today we celebrated my daughter, Carissa, turning 30 years old. And celebrate we did. She planned a fun 90's theme dinner and we all got to share food, fun and laughter. Carissa has been Team Cap's earth angel. She is the sole person who, while taking care of my two granddaughters also helped hold up Team Cap. I will forever be grateful for her. She is not only an amazing daughter, but one heck of a stepdaughter too.
Labs for Dave went well. Except for his PSA. Up to 3809, but on the flip side his count is below 4000. Hey, you always have to find a positive in every negative...or at least almost every negative. His feet are a bit swollen and he is having issues walking, but he is walking...Amen! His wound is ok. Slowly healing. I hope. Hemoglobin is very low at 7.1, but he has no symptoms so we will check it again asap.
Stivarga: New treatment begins...
6.18 If I say that today's oncology visit was overwhelming, that would be an understatement. Dr. Alemany implanted so much knowledge into my little head that by the time I walked out of the office my head felt three times its size.
First off, Dave could start Lasix to reduce the swelling in his legs which is most likely caused by his kidney function and liver metastasis, just as long as we could reduce the edema to give his leg wound a chance to heal and for Dave to be able to walk with better balance is all that matters at this moment. Not the kidneys or the liver. Hopefully the Lasix will do their job in 2-3 days, then Dave can stop taking them, I can barely keep up with the amount of pills I give this man. Ridding the body of the excess fluids should also help boost his hemoglobin.
Dave's Alkaline Phosphatase continues to climb which means more bone activity as well as his PSA rising...so...this tell Dr A that the Afinitor isn't working, but it did some good helping the kidney function and caused no harm (I think) which is OK in our book. The new treatment will be Stivarga. This chemo pill is used for Colon Cancer and GIST Cancer. But according to Dave's genetic testing his cancer cells "could" be destroyed by this pill. It is a challenge. Dave has the option of opting out. He opted in. Me, I am not so sure, but if by doing this treatment our journey could benefit men in the future than both Dave and I agreed we will accept this challenge. Chances are Dave could get some nasty side effects of vomiting or the runs. We are prepared. An Oncologist in Finland is to be thanked for thinking out of the box with this chemo pill and using it for other cancers besides its intended use. He had much success, since then many other lives have been saved. So, thank you, Oncologist in Finland! I am not saying by any means that this treatment will save Dave's live, but it could help or it couldn't. But it could also help other men with Prostate Cancer down the road. Dave is the first patient of Dr. A's doing this treatment. He could possibly be the first patient in the USA, but the study data isn't updated as often as Dr A would like. This treatment is used to trick the cancer cells into avoiding the path that they are on, such as its path of destruction. Wish us luck!
I was wondering about Testosterone...such as how often it should be tested and such. Each patient is different. If a patient is on a Hormone Therapy then every 3-6 months is good. Younger men should be checked more often than older men. So, again it all depends on the patient and their treatment per say. Dave's last check was in April and his T-Level was 2.5, I requested a follow up check. Testosterone is not less than 2...a perfect score.
I showed Dr A photos of the leg wound because I didn't want unwrap the dressing since there are so many germs in a doctors office...he said it could possibly still be infected, so he ordered another round of antibiotics. Hopefully between the Lasix and the antibiotics, the wound will heal the best it can. We know it will never heal fully since Dave's immune system is compromised. Another battle scar, it will be.
I asked if Dave should continue with Physical Therapy...Dr A said by all means, if the therapy is helpful and insurance covers it, then carry on.
6.19 Last night was rough. I was concerned about the Lasix whether it was working, not working, damaging the kidney function...etc, so I barely got any sleep. Dave slept well, which is a good thing. I had an early morning email chat with Shelley, Dr. A's nurse and she explained the workings of Lasix a bit more. Such as while it does help draw fluids from the body, this doesn't necessarily mean that the urine output would be much. I was expecting bucket fulls! I do not know why, but I was. Dave wasn't producing as much as I imagined. Shelley said as long as he has output that is what is important. Only be concerned if he is going less than usual or not going at all. Gotcha! So I went ahead and gave him another Lasix today and it worked like a charm. He is also drinking Gatorade to replace the electrolytes lost and to avoid leg cramps. Dave also started his new chemo pills today. So far, so good. I hope I do not regret saying that! The physical therapist came by to reassess and ordered four more weeks twice a week. The home nurse came by and we agreed the wound is looking better. I also noticed that because the Lasix is beginning to work and the edema is going down which means no more stretching of the skin, but continue with the antibiotics. At this time I an anticipating a Florida storm! It's about darn time! It hasn't rained in too long. My nickname may be Sunshine, but I sure do enjoy rain, thunder and lightning storms. The best part is that there is always sunshine after a storm.
6.20 The day went very well. Dave had a good appetite. Ate his meals, walked with his walker, talked, was enjoying his day, until...he vomited, ALL the food he ate today. That shook him up since vomiting is something he rarely ever does. Once everything got settled down again, such as me cleaning up that huge mess, he was more relaxed...I then gagged for a couple of hours. I am not a fan of bodily excretions. The good news is the Lasix is working and the swelling of his legs is being reduced!
6.21 Dave woke up slurring his words. He mentioned he was concerned. I then got concerned as he continued to slur his speech for a few minutes. I asked him his name, which he aced. My daughter Carissa suggested calling 911 because I mentioned a possible stroke to her, THEN I noticed his lips were not drooping but were very chapped. He was dehydrated from peeing, pooping and puking! Even though I did everything in my power to avoid dehydration, it still got him. I placed some vaseline on his lips and gave him some water mixed with Gatorade. He was back to normal within a minute, but let me tell you that was a scary few minutes. Day 3 of Lasix and the leg with the wound is back to normal. YAY! The wound is not being stretched out any longer. The left leg isn't doing as well. It is still swollen and sore. A fellow team member from my Cancer Teamwork Facebook group suggested placing warm epsom salt towels on sore, swollen legs...so you could guess what I have been doing today. Not sure if it's helping much, but he said it feels good. Cap is having difficulty walking again. Oh no! It is very stressful when this happens. He is also lethargic, again! Oh my. Even more stressful. I vividly remember this happening just a couple of months ago when he started Afinitor, then a couple of weeks later he bounced right back! I hope he bounces back quicker. Not sure how much lifting my back could take this time. On the flip side, today was Father's Day and what better way to celebrate than with your family and all six granddaughters serenading you. Dave had a nice day.
6.22 Phyiscal Therapist was here today, was disappointed that he couldn't do more for Dave, but he did try to have him use his legs. I contacted Dr. Alemany and he suggested stopping the chemo pills until his lethargy is better, then take two pills every other day. The usual dosage for Stivarga is 4 pills per day for 3 weeks, then 1 week off...so Dave has been and will be getting the minimal treatment. Quite often, actually weekly I ask Dave if he is ready to just say "No To Drugs!" and instead focus on quality of life. He says, "Bring It On!" For real? I am exhausted, I truly do not know how he keeps going.
6.23 We both had a good nights sleep. Amen! Even just a few hours of deep sleep is beneficial to both the fighter and the caregiver during their battle with the beast. Our favorite home nurse, Sandra was here first thing this morning. She noticed that Dave was lethargic and mentioned he didn't seem as cheery as he usually is. Huh? Dave, cheery? Dave and I looked confused, then we all laughed. Laughter is a good thing! Oxygen, BP and heart rate are all good. The wound is looking better, not as much slough. We ordered more supplies. She also drew labs so that we didn't have to head over to the hospital. Actually more like couldn't head over to the hospital, but we will if we really needed to. UPDATE: It looks like we will NEED to head over to the hospital on Wednesday and Thursday. Shelley, Dr. Alemany's nurse phoned me to make me aware that Dave's hemoglobin is 6.8 which is below 7.0 and when they normally transfuse. So tomorrow Dave will need a Type and Cross done which is blood work that matches your blood to the transfused blood. Then on Thursday we go back for two units of blood, which takes about 7-8 hours. I now wish we had gone to the hospital for labs today because they could have done the Type and Cross and Dave could be getting blood tomorrow, but everything happens for a reason. Dave isn't symptomatic with shortness of breath or chest pains, he is actually doing better than yesterday. He is still lethargic, which now I know is a sign of low hemoglobin, but when I emphasized to the Onc yesterday that he was lethargic there was no mention of low hemoglobin, all focus was on the chemo pills. On the flip side kidney function is very good. Still not perfect, might never be, but making progress. I was concerned because Dave took lasix, is on antibiotics and he took Motrin for his leg pain. But he flushes the meds through his kidneys by drinking lots of water, which is very important.
6.24 We arrived at Florida Hospital East Orlando bright and early for the Type and Cross. Dave is feeling a wee bit better and able to function! Amen! He is one tough dude! And I am one stubborn dudette! He had a good bowel movement and I do not have to tell you how crucial that is for a man to feel better! :) The Type and Cross and registration went smoothly.The lab technician draws some tubes of blood to match up the Super Soldier Serum (as Cap likes to call his blood transfusions.) When we undergo a transfusion we always stop to reflect and thank the person who donated the blood. By donating the gift of life that person is taking time out of their day to help another human being and to me that is an extremely selfless act. So, once again, we thank all blood donors. We head back to the hospital tomorrow for the transfusion.
6.25 Happy Birthday To Me! We spent my birthday giving Dave the gift of life, blood. To all blood donors, once again, I thank you! Who would have thought that hemoglobin at 7.1 dropping to 6.8 could cause lethargy, confusion, muscle weakness and extreme fatigue. Dave was doing good at 7.1 but since the new guidelines are for transfusions once the level drops to under 7 unless symptomatic, Dave didn't qualify for a transfusion. Geez! We will not wait until under 7 next time, we WILL get a transfusion sooner! The blood transfusion went smoothly. Two units took about 7 hours. Getting Dave in the car to go to the hospital was not easy, I had to get a neighbor to help. Once we arrived at the hospital there were three paramedics walking by so I kindly asked if they could help get him out of the car into his wheelchair, which they gladly did. Then it took two nurses and me to get Dave out of his wheelchair onto the recliner to get his Super Soldier Serum. Once we were done, Dave got into the car with a bit of help from me and out of the car once we returned home a bit easier but...
6.26 Today he is still extremely fatigued and his legs do not want to work. The muscles are very weak. He collapsed on the bedroom floor this morning even though I had his back. For some reason he doesn't trust me as much as he trust ANY one else. What the heck? he should trust me the most. Oh well. I tried, not much else I could do. Luckily my son-in-law didn't leave for work yet and he was able to pick him up. The Physical Therapist came by and worked with him for a bit, did what he could do. The home nurse came by and tended to his wound, which I neglected to tend to yesterday due to extreme fatigue and forgetfulness. I did have one more visit added to the schedule for the home nurse for next week. There is so much I need to get done, just do not have the time to take care of it. One person could only do so much. My daughter, Carissa, helps us so much. I would be lost without her. Cap continues to rest and hopefully bounce back, or else we call on the services of Hospice.
6.27 It has been a rough day. So far Cap has not bounced back. His legs are heavy and weak and barely uses them, maybe just to stand for a few seconds while I dress him. He is still very fatigued. He isn't as lethargic. He isn't eating much, just takes small bites which doesn't amount to much. He hasn't had a real shower in over a week. We switched sides of the bed because my side was easier for me or Carissa to lift him up or lay him down. He has had some, his words, "outstanding bowel movements!" Oh the joy to just let it flow...
My stepson, Mike came to visit today. He sat with his dad while I went to Chuck E Cheese with Carissa, Faith and Lily to keep my birthday tradition of celebrating with Chuck! It was nice to get out for an hour and have some fun, even though I am bone tired and mentally drained.
6.28 Dave hasn't bounced back yet since the blood transfusion on Thursday. He normally would have bounced back by Saturday at the latest according to his track record. He continues to be extremely fatigued and just wants to sleep. His legs still ache and buckle. He's drinking fluids but not eating. I spoke with his home nurse and she said to keep pumping the fluids in him. It's very sad to see him in this condition, but we have faith that everything that happens from this point forward is meant to be. Other than that we had a good weekend. which included a visit today from a longtime friend of ours. Dave had nicknamed Sandy and I many years ago as Witchy 1, me, and Witchy 2, Sandy. Fun memories! :) We had him laughing a few times. I'm also thankful for my daughter who goes above and beyond to help her mom and stepdad. She surprised him later in the day with sausage gravy and biscuits and his eyes lit up like a Christmas Tree! He only ate one, but really enjoyed it. A neighbor of ours had sadly lost her father so she generously gave us his supplies. One of the supplies are Condom Catheters which are a genius invention for men who are bedridden, such as Dave is at this time. I found the catheters on amazon and on ebay also...I highly suggest them, along with a leg bag.
Hospice enters the journey...
6.29 Dave's home health nurse was here to draw labs and tend to the wound. In the meanwhile, I emailed our Oncologist with Dave's status from the weekend and Dr. Alemany called me within 10 minutes...I knew that he was NOT calling with good news. He suggested I contact hospice because it seems that Dave is going into liver failure. Dave will have extreme fatigue, as his organs begin to shut down he will go into a comatose state, he will not be in pain, he will then pass away. This could take from 1 week to 1 month. Dave is showing the signs of end of life. Fatigue, lethargy, confusion, swollen abdomen, not eating, not urinating...this was NOT good. The lethargy and confusion is from the toxins invading his brain. WOW! You think you could throw any more info at me in one phone call, doc!?
I once again requested a script for Lactulose which helps rid the body of toxins that the liver, since it is malfunctioning, can not excrete. He said, since he is having bowel movements the medicine is not needed now. After a panic attack and almost a heart attack, I phoned Hospice, the nurse arrived at our home within hours to register him.
Hospice will make him comfortable. They will be there for the entire family. They will support you. BUT, in the meanwhile the Onc will check the labs to see how they are. Today's labs weren't good. Actually his hemoglobin is 10.1, we have been trying to get over 10 for three years! His PSA is 4731. That is NOT good either. His calcium and potassium are low. Since then I have been crushing calcium and potassium pills and adding them to food to help build them up again. Do NOT do this with time released pills since patients could get a larger dose than expected and this isn't safe. Dave's liver panel is off...showing signs of failure. His kidney function is good, even though he couldn't urinate for 3 days.
6.30 My daughter, Michelle arrived from her extended stay in Italy to be with her family. I am so thankful she is home.
7.1 The hospice nurse was about to insert a catheter, when right before she inserted it, he let it flow! A stream of rusty colored urine. I was shocked! I asked how she did that. She said via stimulation to prepare the penis. I said, that is my job! We had a good laugh. As did Cap. The hospice nurse thought he had an infection until I told her his bilirubin was high, she then said it was due to cancer progression in the liver. Her and I opted out of placing a catheter since they can be uncomfortable and a nuisance, why make Dave any more uncomfortable than he has to be. We made the right call. Since then he has been able to void and the color is less rusty. And mind you...even though I mentioned many times to the nurse in a panic that he wasn't urinating NO ONE mentioned a catheter! Until I mentioned it to the hospice nurse! She said good idea, the oncology nurse then said, good plan! WTF? I do not get paid for thinking of a good game plan, y'all do!
I asked this nurse how long she thought Dave had to live. She responded with 3-6 months. OK, I now know who I do not want visiting the house again.
Dave requested via Hospice a Do Not Resuscitate and Do Not Feed Me Through a Tube! If his body is failing he does not want to bring it back, he will bow out gracefully. Well, in his terms, he will continue to "Man Up!"
I will be back when I have more time...
7.3 This morning I arose from my air mattress on the floor to check on Cap. I removed his C-Pap machine and said "Good Morning" and he RESPONDED with a "Good Morning" as clear as day. I was elated! He has been so tired and unresponsive lately that I never expected to hear him speak again! I asked if he slept well, he said "Yes, I did...did you?" Always thinking of me, even at precious times like this. I collected the Chickies so they could have a word with Dave and enjoy the lucid moments that we were blessed with. Michelle asked him how he was feeling, he replied, "Just peachy." We smiled. We hugged. He said hello and smiled to Faith, Lily and Carissa. We were so thankful for those few special moments of having Cap back before he slipped away once again. To have Cap speak so effortlessly and filled with emotion was a beautiful memory I will never forget.
The hospice nurse brought a wedge pillow for Dave because I turned down the hospital bed because Dave never liked hospital beds. The wedge pillow helps to adjust him so that his body is elevated for his comfort. He ate a little, not much. His vitals are low at 94/52 and oxygen at 94*. Cap seems so calm and peaceful. This could from the toxins from liver failure invading his brain. But, who knows maybe the toxins are a blessing in disguise.
Have I mentioned lately that cancer sucks? That I am sure there is a cure, but we will never know it exists. Not only is that inhumane but also heartless and cruel. Who would have ever thought that we would live in a world that a dreadful disease, which is a multi-billion dollar business would come before the human race. #FUCancer and #FU to all who allow this to happen.
7.4 As families prepare to celebrate the 239th birthday of America, Team Cap celebrates Dave's life and his last remaining moments, however many that might be. Dave is tired, so very tired. He tries so hard to keep fighting, but his strength is almost null and void. He has been bedridden since Monday. He is blessed to have family and neighbors who are strong enough to pick him and place him in a wheelchair so that he could get an hour or so a day of sunshine. He still has somewhat of an appetite. He is just so sleepy. My heart aches for this brave soldier who put up such a battle against the beast. I told him this morning that I was honored to have fought alongside such a heroic warrior these past 7 years. We have made memories that are irreplaceable. Together we have learned so much and help teach others along our journey. Dave's gift to me was helping to create Sunshine. My gift to him was being his partner in the fight. We sure do make an awesome team! He nods and smiles as I remind him of our accomplishments. He doesn't have energy to respond, but facial responses speak volumes. He still hears us speaking to him. They hear you until the end. Never, ever stop speaking. Luckily we never left anything unsaid before Dave took a turn for the worse. We always shared our appreciation for each other. Lily, our 2 year old granddaughter sang Twinkle, Twinkle to him a few times today, he thanked her verbally! :) I awoke him by singing his song for me, You Are My Sunshine, he smiled a goofy grin, it was delightful.
I have nagging thoughts...did I miss anything regarding his labs, treatments? Caring for Dave has been my life since 2008, I will have to adjust to not being Dave's caregiver and that frightens me. Am I doing everything possible to make him comfortable? He has moans and groans, but doesn't pinpoint the location. We made our guest room, his room. This room has a twin sized bed that we use when we are under the weather. This is the room that Dave chose to use. I sleep on an air mattress by his bed to be there with him throughout the night.He sleeps so much more peaceful with me in the room. How did our journey decline so rapidly? I did notice his swollen tummy around the beginning of June, I mentioned it to the Onc, he said the liver and spleen are swollen, but not by much. Try these trial pills. OK, you know best. This past week I spoke with our family doctor who said those trial pills needed to exit the body via the liver, if the liver was already in a decomposing state due to the cancer spread, those pills could have possibly caused the liver failure. But, chances are that his liver has suffered enough. Will Cap once again bounce back? If he does that would be a miracle. But miracles happen. I have witnessed many. I told Dave he is not giving up and to not think for one second that he is. He is bowing out gracefully, like a real fighter would. He has given so much hope to other men in their prostate cancer battle. He has even educated doctors. Once he passes his body will be donated for research on hopes of possibly finding better treatments or educating researchers on beating the beast. Team Cap might be on the decline, but we will never give up the fight. I will carry on for Dave. I will fight for him after he is gone the same way I fought for him while he was by my side. I will miss my partner in crime, but he has passed on an abundance of strength through his lessons that he taught me.
Monday we are scheduled to go to the hospital for Cap to have a Paracentesis to drain the excess fluids from Cap's tummy. I am very nervous and apprehensive about how I will get Dave to the hospital and if he will survive the procedure.
How quickly things change...
Dave's oncologist just called while on vacation with his family, to check on Dave. I filled him in on the latest. Dr. A is heartbroken. He wishes there was more he could do.
Unfortunately there are no more treatments available. Cap has done them all. It's time for him to rest. He's helped more men on their journey and educated more doctors than any patient Dr. A has had. Cap is going out a hero. A fighter who didn't back down. I'm honored to have had the opportunity to fight alongside him. Cheers to Cap!
We will not be going for the procedure on Monday at this time. Dr Alemany predicts 1-2 weeks for Dave. Yet, Dr Alemany has been incorrect before. This time I think he is correct. Our goal was to keep Dave alive to July 11th so that he could see our daughter and son-in-law when they returned from Italy. Michelle came home early when Dave's diagnosis became grim and we are so glad that she did, Michelle has been a godsend to the family. Dave is blessed to be surrounded by the five Chickies who cater to his every wish, which isn't many, but we cater anyway. He slept most of today. Barely ate or drank. Very sad day for Team Cap.
I am on an emotional roller coaster. I have excessive empathy for Dave, I know how much he wants to live and continue fighting, which makes me cry for him. My heart aches for him. Losing my other half is heartbreaking. I have lost many family members along my journey of life and each of their passing hurt equally the same. All we have left are memories.
While the fireworks were exploding on the TV set, a tradition Dave had for years, I fed him a couple of bites of cool whip. It was the last taste of food he would ever have. He also stopped drinking fluids today.
My thoughts on Hospice...
I have heard many stories over the years about Hospice. Most stories are good, some are not so good. Before I accepted Hospice for Dave's care I had some rules. That he was still allowed to have his Oncologist on board. They agreed. That he would be able to have labs drawn at the doctors office or in the hospital. They agreed. That we would ALL work together as a team, meaning me, hospice and the oncologist. We were all in agreement. Amen! Hospice is paid so much money a month for the patient via Medicare or the insurance company. That money is allotted for services rendered. I'm assuming any money left over at the end of the month goes to hospice. Actually I have a shitty attitude about hospice in general. Not the nurses! Just the way the business aspect of it operates. If you think about it, people do not have much of a choice when end of life comes knocking on their door...families want what is best for their loved one and they call in hospice. Maybe my shitty attitude will change one day, but as of now...it hasn't. Hospice is just a company that seeks profits while sending out earth angels to tend to the families and patients in need.
Hospice tells family member to NOT call 911 or go to the emergency room in cases of an emergency, to first call their 911 number. Why? Because you might get the bill and have to pay out of pocket. Really? At a time such as this, end of life, do we really care if the patient is going to be billed? The hospital surely won't get paid. Oh my. All the rules of Hospice.
7.5 Cap has begun to tend to his soul work. He has been unresponsive since noon yesterday. He tried so much to stay alive, to fight a good fight and he succeeded. He has battle scars to prove it. But, Cap's body is beginning to shut down, one organ at a time. His liver, kidneys, lungs, brain and then heart. Bless his redneck heart. That is what I used to say to him when the mood struck. My tears run rampant. I put on a brave front when I am with Cap, whether I am massaging his body from head to toe to keep him limber, placing cold water swabs in his mouth to prevent cracking or drying out, turning him over to prevent bed sores or bathing him...If Cap sees me sad he will never leave this earth for a better place. While he does have faith in me that I am a survivor, he never liked to see me sad, so now is not a good time. I play Tim McGraw's music for Dave, we have so many memories with Tim, how could I not play Tim's tunes?
I phoned Hospice at 4:30 am because I awoke to Dave breathing rapidly. The nurse arrived an hour later. She told me that his breathing will be labored, shallow, rapid, it will fluctuate as his organs shut down. Dave's lungs are clear which will help him avoid the death rattle, the breathing noise made before one departs this world. The Hospice nurse said it would take up to 7 days for his body to dehydrate, along with the fluid in his tummy, his body has a lot of fluids to work through. Dehydration is the natural way to die. For real? I think it is a bit inhumane to watch our loved ones wither away. I feel we should all have the right to euthanize our loved ones, we can euthanize pets, why not ourselves? The Kardashians can have a TV reality show, Sarah Palin could run for vice president, yet we cannot allow our loved ones to die without suffering first. Haven't we all suffered enough?
The nurse said the tips of his toes and fingers will become pale as blood begins to collect in the core of his body. Of course, I had to ask, how long? From her estimate he has another 1-2 weeks to live. Really? Oh my. Maybe I should just stop asking the question.
Dave did open his eyes for me today. He looked at me, yet past me, he was long gone, but he opened his eyes and I feel in my heart he was saying goodbye. Bless his beautiful heart. I was so happy, yet sad. Such an emotional roller coaster. #FUCancer.
Dave is surrounded daily by loving and caring hands. The Chickies make a great team. Cap wants for nothing. All that matters is his comfort and ease into his next journey.
Team Cap Finale...
7.6 The Hospice nurse came for a visit this morning. It was a informative and productive visit. Cap peacefully rested while the nurse answered my questions and gave Michelle and I additional tips on how to make him more comfortable. Sandra suggested we cut the back of his shirt up to the neck line so that the material didn't bunch up on his back. So we did. Cap now had his cape. The cape was backwards, but nonetheless he looked even more like a hero with his cape on and the blood that was settling on his back could move more freely. Cap's breathing began to get a bit more struggled so she suggested I give him his 2nd dose of morphine to help him relax. I say 2nd dose because I gave him his first dose at 5:30 am when he was struggling to breath, but recovered quickly after. Up until that dose Dave only had Motrin for his pain, up until two days prior when he couldn't swallow anymore. The nurse left saying she would return on Wednesday. Cap had other plans. Not shortly after he began to struggle more with his breath. The nurse was only gone about 15 minutes so I called her. No answer. I texted her. While waiting for a text we propped his head up more. I began to panic as I wasn't sure what was going on. His body isn't dehydrated, his toes and fingers aren't pale! She texted me back 10 minutes later to prop him up. Ya think????
Cap continue to struggle to breath. Surrounded by family I called for my friend Maritza, who recently lost her mother, she rushed to our side. I had Michelle text my friends Sher and Deb. Both of them whom are nurses and lost their mothers to this dreadful disease. They suggested another 1/2 dose of Morphine to help ease the pain. Deb and Sher informed me that Cap was dying! NO!!! We noticed his feet were becoming white and blotchy which means his circulation was leaving his lower extremities to his core area. His body, this incredible machine was struggling to stay alive, while it was shutting down. I was in awe. Yet, Cap's comfort was top priority! They said give him another 1/2 dose...his breathing began to change, struggled yet slower...his heart was beginning to stop. His heart, his strongest organ which cancer never had a chance to touch fought a good fight...Cap took his last breath. What a surreal moment. We gathered at Cap's side and felt his angelic aura which was now expressed on his face. My heart was exploding with pride and sadness as I looked at my hero. I placed my hands on his chest until I no longer felt a heart beat. I then listened with my stethoscope until the final flutter was finished. Until the very end Cap didn't wait for cancer to take him, Cap took control and beat cancer to the punch. Cancer wasn't done with him yet, but Cap said I am done, I do not like to wait and neither does my Sunshine...we get shit done on our terms. It was an amazingly beautiful moment. My heart was beaming with love and pride for my champion. Together as a team, we were there for Cap's final breath, with no help from Hospice.
Team Cap isn't over yet...
After Dave had passed. The hospice nurse returned to our home shocked and bewildered. The first thing out of her mouth was the morphine did not kill him. OK? We didn't think it did. His body was tired. He fought a courageous battle. Why be so defensive? Maybe she was trying to comfort us, but we all agreed it wasn't the morphine, it was Cap's time. She verified that Cap was gone by listening for a heartbeat. She pronounced him gone at 1:44 PM, Hospice time, but in reality he passed at 12:58 PM.
As we waited about two hours for the driver from the funeral home to arrive, we each spent time with Cap, expressing our love and gratefulness for the gifts he left behind for us. I thanked him, once again, for helping to create Sunshine. When I first met Dave I was a divorced mother of two young girls and believe it or not an introvert, yet I was slowly finding my way out of the shell. Dave gave me confidence to blossom, to become Sunshine. I will forever be grateful to him. When Sunshine was born my fear of expressing myself through my words was also born. With Dave's love for me I was able to reach my goals and gain the confidence I never knew I had. We truly enter someone's life for a reason. We never meet by chance, there is a purpose. I feel my purpose was to be the person to care for Dave. No matter how difficult our journey was at times I would do it all over again. I would never trade our history together for anything else in the world. I learned so much about myself, about my daughters, about my family, about friends, about people, about life from Team Cap's journey. But, our 18 years together will not be defined by cancer. We had many wonderful memories before cancer and even though we are now on separate journeys we continue to help others and make more memories.
Dave's body is now in the care of MedCure. His body will be used for research to hopefully help men down the road be able to beat the beast...prostate cancer. To maybe help doctors be less clueless about how to treat men. Who knows maybe one day as long as the women of men patients continue to stand up to prostate cancer, treatments could become as efficient as those for breast cancer. As we all know there will never be a cure for cancer. There is too much money to be made from this horrible disease. But there are new treatments being created to prolong life. Even though as we know those treatments cause havoc on quality of life, but being about to live just one more day is important to many.
Rest in peace, Cap. You will be missed and never forgotten.
Team Cap's Prostate Cancer Journey
If you are looking for an online support group, look no further...
My Facebook group continues to grow with patients and caregivers who are fighting the good fight and for those who won the fight. We also support the caregivers who lost loved ones, but put up one heck of a fight.
Feel free to join the team ... "Cancer Teamwork"
Are you unsure of what to say to someone fighting cancer?
- Cancer Etiquette
Chances are we will all be affected by cancer at sometime in our lives. This article shares the do's and don'ts from my perspective.
How to Stay Strong While Dealing With Cancer
- How to Stay Strong When Dealing With Cancer
Whether you or a loved one is dealing with cancer, your strength is vital. Staying strong is not mandatory, but it helps you cope...
FINALLY the Urologists are seeing the light...
- Sweeping prostate cancer review upends widely held belief on radiation after surgery
Important news for men receiving treatment for prostate cancer: Two new studies from the University of Virginia School of Medicine have upended the widely held view that it's best to delay radiation treatment as long as possible after the removal of
To make a donation in Dave's honor to the Prostate Cancer Foundation...
© 2011 Linda Bilyeu
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