- Diseases, Disorders & Conditions»
Surviving Cancer - Hodgkin's Lymphoma
Hodgkin's Lymphoma - Nodular Sclerosis
In the spring of 1995 I was diagnosed with Hodgkin’s Lymphoma . Of the four types it was the mixed cellularity type. The cancer first appeared as a lump on the right side of my neck and soon progressed as a series of smaller lumps heading for my chest. The way these lumps developed and traveled and the fear with it, made me refer to the cancer as “the beast.” A CAT scan also revealed that I had a tumor in my lower right sinus cavity, which is not supposed to happen with Hodgkin’s. After having four cycles of chemotherapy and radiation to my right sinuses and mouth it seemed that I beat the disease or beast. At least I thought I did. Below is my story:
One year, two years, five years, or the ten year milestone, it didn't matter, I just wanted to forget that I had cancer. I wanted to put it behind me. During one of my treatments during my second bout with cancer I made the mistake of asking the nurse too many times what each chemo drug was for and what physical effect it had. She seemed to be irritated, lecturing about all the drugs again as she hung the bags on the iv pole. It simply was a matter of conditioning. You learn a skill, such as painting, or playing the piano and you are rewarded, but when you are administered pain, it is the kind of conditioning that makes you forget. I just don't know why I was so stupid to keep asking, because I really didn't care too much about the details of the drugs as long as they worked.
After the last time I had cancer, the oncologist told me that if I would have a recurrence it would start where it left off. That was great to know. No matter what, the beast was going to get into my chest anyway. There was no way of winning. The only way was not to get cancer again. That was my only chance and my only choice.
Six or seven years later I stopped going to the doctor for any kind of checkup. I didn't think it was necessary. I could check for lumps on my own, feeling for them at the base of my neck or under my armpits. So, thirteen years later, when a lump appeared on my right leg near my groin, I didn't think anything of it. It was early July, after a four mile run when I first noticed it. I always like to do sprints so you have the tendency of hurting all over when you are done. Considering your legs are taking most of the punishment I assumed I simply pulled a muscle. I was concerned that I might have herniated it but eventually I forgot about it because it didn’t hurt. Every once in a while I would check my leg forgetting about it for weeks on end, but the lump was always there.
The “no pain” aspect should have been the alarm. Even though I felt fine, the first symptom reared its ugly head during the same month that the lump showed up. For about two weeks I lost my appetite and ten pounds with it. For me, this was not good since I am somewhat thin anyway, but I eventually regained my appetite and the weight.
Everything was back to normal until November and December when some truly bizarre symptoms showed up. The first real noticeable one was drooling. Yes, I was drooling. Even though the radiation more than a decade before dried up my saliva I still slobbered all over everything when I slept. I put stains on all my pillows. I put a stain on my winter coat when I fell asleep on the couch. I tried desperately to counter it by sleeping more on my back which I am uncomfortable with and I hate to do. At first, I was inclined to think this was a good thing. Maybe the saliva gland on the right side of my mouth was now back to normal, but this unfortunately wasn’t what was happening. The last time I had the disease, before the lumps showed up on the right side of my neck, I would sweat from my right armpit for no reason. I wouldn’t even have to exert myself. Standing, sitting, it didn’t matter. It was so random. It was like turning on a faucet and the odd thing was, it was exactly like a faucet. The sweat didn’t smell. It was only water! However, as sudden as the drooling started, it just as quickly stopped a couple of months later.
The next weird symptom, which occurred at the same time as the drooling, is my becoming a human candle. It first started in the morning when I was still in bed. I could actually feel heat coming off the top of my head. Soon it progressed into my waking life. I was on fire any place where it was cold, the heat just bobbing off the top of my head, whether I went out to get the mail, walked to my car at the supermarket, or if I stuck my head in the freezer. This symptom lasted longer and got worse as spring rolled around but it never morphed into night sweats.
These two symptoms however paled in comparison to what was to come next. By mid January of 2009 I ended up in the hospital. It started one Sunday when I ate too much. By the time I went to sleep I did not sleep. I couldn’t because the bed wouldn’t stop moving. My heart was racing and it would not stop. It pounded so strong and so fast that I couldn’t keep still. In the morning my sister took me to the hospital. In the emergency room I laid in bed with a heart rate of 120 beats per minute. Any attempt to bring it down did not work. I was then admitted for the night where again, I did not sleep. Yes, stay the night where we will take care of you and find out what is wrong. Don’t worry. Get a good nights sleep.
Well, that is what should have happened, but instead, I was harassed every hour or two by a revolving door of nurses. Let me check your EKG. Let me draw some blood. Let me take your blood pressure. Then is started all over again. I started to doze off initially but I eventually gave up. This was compounded with an iv in my arm that prevented me from moving much in bed, and then considering that the iv was a blood thinner, I had to get up constantly to urinate. Obviously that night was not very good. My heart rate should have been 220.
By morning I was taken for a stress test. I was convinced that they were going to find something wrong. They had to since I had a family history of heart disease, but to my surprise they found nothing. I was fine. The explanation for my racing heart rate was a combination of acid reflux and stress. A few hours later I was home and my heart rate was somewhat back to normal.
The second serious symptom started innocent enough with my simply going to the bathroom more times at night than usual. At first I thought it was only a bladder infection. Some of the times I had some low level pain but it always seemed to go away when I drank cranberry juice or when I drank a lot of water. Then, one day, while working out in my basement on the treadmill, I thought I pulled a muscle. It didn’t really hurt. I only felt some discomfort at the crease between my right leg and my groin area. I tried to continue exercising but it only got worse. One day, after using a rowing machine, I was horrified when I urinated pure blood. Now, did I go to see a doctor. No. Despite how shocking it was I believed that I only injured myself and that I would heal on my own if I was careful, and this is what seemed to be happening. The blood diminished over a period of two days and then it disappeared. I guess I didn’t want to see any evil.
However, once I started any physical activity the blood would return. I still wanted to cover my eyes, not wanting to see the inevitable. The main reason is that I always seemed to rebound quicker. Eventually I didn’t notice any blood for a couple of weeks. This really shows how stupid I was. One day I felt the area between my groin and my leg and noticed a number of small lumps. It reminded me of the small string of lumps on my neck more than a decade earlier, but this time I felt quite a few more. What did I do? I did nothing. When I noticed a slight swelling on the right side of my groin, what did I do? I did nothing. It wasn’t until the blood returned and a parade of family members calling one after the other that I finally relented.
The whole blood incident began in late March. Four weeks later I saw the doctor. The first thought was that maybe I had a kidney stone. I was reluctant, but I showed him the lump on my leg. He was concerned. This was the first time that it hurt since he pressed on it pretty hard. After I told him how I noticed it after running, he even thought that it could be a herniated muscle.
He sent me for a CAT scan. When he got the results a few days later the news wasn’t good. All of the lymph nodes on the right iliac chain were enlarged. This is the region where I noticed all of the little lumps at the crease between my right leg and my groin. There were also a good number of enlarged nodes along the inguinal chain. These are the lymph nodes that run along the abdominal aorta which branch into the legs as an inverted Y. The large lymph node on my right leg was on this chain. The enlarged nodes had spread up the abdominal aorta as far up as my intestines. The only good and perplexing news was that my stomach and my spleen were clear. It was odd because if the disease was going to reoccur, it would have spread down from my chest. This caught the doctor off guard. Even he was confused, but there was no doubt that the cancer had returned. It was a weird experience talking to him. He felt uncomfortable giving me the bad news. I felt uncomfortable that he had to do this. The news was shocking, but I wasn’t devastated. I wasn’t crying. I had been through this before. I just thought, here I go again. The doctor then told me that I had to go see a surgeon for a biopsy. Then he walked out of the room without saying anything more. I have to admit, at that moment, I felt alone.
I checked into a surgical clinic on May 4th for the biopsy. The surgeon removed two lymph nodes, the one in my leg and one in my groin. He told my sister, who was in the waiting area, that these were the largest lymph nodes he had seen. Apparently the beast was back with a vengeance, so it seemed. I still held out hope, but that was pretty dumb. What else could it be? I was even dumb enough to think that the lymph nodes could be infected. It is surprising how the mind can defy logic when it is confronted with something unappealing. If all those lymph nodes were infected I would have had a fever of 200.
A few days later the surgeon called me about the results and yes it was again Hodgkin’s. Another few days later I visited the oncologist, the same doctor that treated me 14 years ago. The last time I saw him was in 2001. When I walked in, he happened to be sitting at the desk near the receptionist. When I signed in, he greeted me by my name. With all of the patients he has and did have, I was surprised that he remembered me. It was a warm feeling. At that moment I felt like I was in good hands.
When I finally got into a waiting room and the doctor looked over the biopsy report it became obvious how unusual my case was. The reason why the disease didn’t reoccur in my chest like it was suppose to was because it was a different type of Hodgkin’s. This time I had the more common nodular sclerosis.
I guess I am just an enigma. There were two facts that the oncologist stated that surprised him about me. First, he couldn’t believe that I got the disease again after 14 years. This is not suppose to happen. If you get through the ten year mark you are suppose to be safe. Second, he never heard of anyone getting another type of Hodgkin’s or having two types in a lifetime. This is not suppose to happen. When he presented by case in front of the tumor board, all the doctors couldn’t believe it.
“That can’t be”, was the most common statement among them. A second type, 14 years, tumor in my sinus cavity, these are all oddities but they aren’t the only ones. Why has the disease only occurred on the right side of my body? When the cancer appeared on the right side of my groin, it headed straight up toward my intestines and my stomach without going anywhere else. In other cases that I researched, if it started on one side of the groin it would not only go up but it would also migrate to the other side. Why didn’t this happen to me? If there is any doctor that can answer this I would be happy to hear the explanation. One final note, this may not seem right, but when I heard about the “tumor board”, I found the name funny and amusing.
From the time of the first biopsy to my first treatment it took an agonizing eight weeks. This is in comparison to four weeks the last time. I can’t believe all the tests and procedures that I had to take before I could start. I had to have a bone marrow biopsy, then a PET scan, then a echocardiogram, then a pulmonary test, then an infusion port inserted in my chest. It took over three weeks just to schedule the PET scan.
The waiting was frightening. My symptoms were getting worse. My heart was racing more often as I ate less and less. I could barely lift anything or exert myself without blood showing up in my urine. I also had the added complication from the first biopsy. After the two lymph nodes were removed the two vacant areas were replaced with fluid, which at times was painful. Before my body could adjust and compensate for the missing lymph nodes, I had some fluid build up in my right leg in the thigh and ankle which wasn’t comfortable either. It took five weeks for the fluid to drain allowing it to heal. During the entire time walking was a chore especially climbing stairs was difficult. Wearing tight underwear was impossible. At the third week I developed a low grade fever and was put on antibiotics.
To complicate matters, the aftermath of the bone marrow biopsy brought its own set of problems. I had two holes drilled into my hips on both sides from my back. Sleeping was a real trip. In order to change sleeping positions from one side to the other I had to get up on all fours to do it. Rolling over on my back caused so much pain I would have had my head stuck in the ceiling if I tried it. Rolling over on my stomach was out of the question also, because of the fluid in my leg and groin. I also realized how painful it was to run. Once, while trying to get across a parking lot, I ran to avoid the cars. I can’t believe how much my hips hurt when I did that. It probably would have been less painful if I would have been hit by one of the cars. Yes, life was really great at that point.
I have never been a person who judges someone for their vices. I don’t smoke and I don’t drink, but I have never judged others because I am just as human and just as susceptible to addiction. I definitely realized this when I had both biopsies. The drugs that they gave me were great. I could have easily become addicted to them. Of all the horrors that I went through, those two times were the best. Those were the only two times that I was very happy.
The complications and the pain had a mixed blessing. It kept my mind off of what was really happening. By June I was much better and now my mind turned to the disease. Nights were particularly stressful. Lying in bed, the only thing I could think of was how the beast was growing and boring and drilling deeper inside. I so desperately wanted the treatment to begin. I tried to visualize my own immune system attacking the cancer but in this battle it was losing badly.
Before my treatment began the oncologist was trying to figure out how to treat me. There is a lifetime limit for the chemotherapy drug that he wanted to use. Since it was used for my treatment 14 years earlier, this posed a problem. It was compounded when the PET scan revealed that my cancer was stage 3 and not stage 2. The scan revealed a possible cancerous lymph node near the right side of my heart. Now radiation was out of the question and thus, the required treatment was eight cycles of chemotherapy (16 treatments). One alternative was to alternate between the drug I had been given before with an old standby drug primarily last used in the seventies, but there was more possible side effects. The primary concern was that this drug could permanently damage my bone marrow. Talk about friendly fire.
This wasn’t going happen. I wasn’t going to take the chance. I didn’t want to be treated with that drug. The oncologist finally decided to put me on only two cycles (4 treatments). I would then wait two or three weeks, have another PET scan, and then go from there.
The first treatment took place at the end of June. It actually was not that bad. It is amazing the new anti nausea drugs that are now available. I wish I had them the first time I had to go through this. However, there was one side effect. I didn’t sleep too well that first night. One of the nausea drugs was a steroid, making me stay up half the night wandering around my home. When I did fall asleep I went out like a light. I didn’t hear the phone nor did I hear my sister banging on my front door the next morning. Luckily I never suffered this in the following treatments. Maybe I also couldn’t sleep because of my excitement. I was excited that my treatment had finally begun. I knew that the beast was going to take a beating and in the following days I found out that it did. Immediately the swelling in my groin went down. When I gained my appetite back I found out I could eat without my heart racing. My blood pressure even went down. I also found out that I could use the treadmill or lift something heavy without blood showing up in my urine. When I first mentioned the blood the oncologist became alarmed.
“You have to see a urologist” he said rather demanding. I tried to brush him off by telling him that it probably was the kidney stones that the CAT and PET scans detected. Initially I don’t think he believed any of these symptoms were caused by the cancer but I knew better. It was my body. I knew the enlarged lymph nodes were pushing on my bladder and on the abdominal aorta. I realized, though, that of all the possible doctors I could have decided to go to, I definitely picked one of the best oncologists. Actually, I was referred to him by one of my sister’s friends. During a follow up exam, after the first cycle and a half of chemotherapy, I told him about the symptoms going away. He was pleased and open minded about it. He wrote this down in my medical file.
The rest of the chemotherapy treatments went well. All of the swelling disappeared after the second treatment. Most of the time I slept, sometimes as much as 16 hours a day on Saturday and Sunday. Like the last time I had cancer, my treatments were on Thursday, so appetite wise Saturday was the worst day, but it was never really that bad, mostly a change in taste with a revulsion for sweets.
I was finished with chemo by mid August. I went for another PET scan in early September. Three days later I had a message on my answering machine from the doctor’s assistant. She was excited. The PET scan came back negative, no sign of cancer. The doctor then consulted with an oncologist at the University of Michigan on what to do next. He was pleased that I responded so well and hinted at the possibility that I might not need anything more. However, the doctor at the university suggested one more cycle of chemotherapy which I finished in October. On November 3rd, I met the doctor at UofM. She looked over my results and then told me that she would consult with other doctors and then decide what to do next. The following Friday she called and recommended follow up radiation only at the groin area and then that would be it. However, when I talked with the radiation oncologist, who also was the same oncologist that I went to 14 years ago, he still was against treating me with radiation. Now, the doctors will consult each other again and my treatment is up in the air again.
As I write this I haven’t a clue what my next treatment will be or for how long so maybe it is premature for me to state that I survived cancer a second time, but there is definitely one thing I do want to state. I don’t want to ever write another article about me surviving cancer a third time.
This is the conclusion to the my personal story "Surviving Cancer - Hodgkin's Lymphoma" that I wrote about above. This is about my final treatment and my road to recovery.
I never received radiation as part of my treatment. The university doctors recommended radiation only at the groin area since they believed the lymph node near my heart was a false reading in the PET scan. However, the two doctors that were treating me which included the radiation oncologist disagreed. If the single node was a false reading then why did it go away after two cycles of chemotherapy? Radiation would have to cover most of my body to include this one lymph node and the consequences were pretty grave. Mostly, it could permanently damage the bone marrow.
So the radiation was out of the question and for two months I enjoyed a vacation hoping that I didn’t need anymore treatment. But I was crazy to think nothing else was going to be done. It is not surprising how delusional you can get when you are in this situation.
I got the first clue to what they were going to do when I had the monthly port flush. The nurse told me she heard the doctor on the phone talking about a different chemotherapy treatment. It most likely was going to be the ICE regimen but she wasn’t certain. I went and looked it up and was not too pleased on what I found out. It was a treatment for aggressive and recurring lymphomas. It required an overnight hospital stay with a one day drip. The primary concern was the drugs could damage the kidneys and cause bleeding in the bladder.
By early December, I was called and told when to come in to see the doctor. The anticipation of what was going to happen next made me nervous. I dreaded what I was going to hear, and yes, the doctor finally decided on ICE. I told him about my concern with bleeding and he reassured me that another drug would be administered that would prevent or alleviate this symptom. So, as an early Christmas present, I was admitted to the hospital on the 16th. Initially everything seemed to go well. I stayed in the cancer ward where I had a room all to myself, courtesy of a large donation to the hospital. The next day I went home and then the fun began.
The first thing I noticed is it burned when I urinated. This lasted about a day and I dreaded every time I had to go to the bathroom. At least I didn’t see any blood. The main symptom was how I felt which I can’t exactly explain. I simply felt horrible. Not only did I sleep a lot but I moved in slow motion. I was in pain in ways that I couldn’t describe and it was evident in that this chemotherapy hit me harder than what I was on before. For my first occurrence of Hodgkin’s and the first three cycles of my second occurrence I was on the ABVD chemotherapy regimen. This is the chemotherapy that has a lifetime limit which forced me to go to ICE. On ABVD I lost my hair but not all of it. I lost most of my facial hair but I still had to shave. On ICE I lost my hair completely. I last shaved on the 23rd of December and didn’t pick up a razor until the end of March. I was also hit harder in blood counts. I was used to having low white blood counts but with ICE they became almost nonexistent. I even became anemic. During one of these extremely low blood counts I was exposed and contracted the 24 hour flu. It was rough but I did, out of some miracle, get over it in a day.
Unfortunately I had do endure the ICE treatment three times as they pumped more chemicals into me. With names like, ifosfamide, carboplatin, and etopside, these sounded more like chemical names to me than drugs. Almost as if they were being pumped directly from a car battery.
Surprisingly, the only thing that was normal was my appetite. Unlike the nausea under ABVD, I actually had a good appetite and eating did alleviate the other symptoms. However, I did have another symptom that did not have to happen. I had serious stomach pain that would occur at all times of the day. Most of the time it would hit at around 3AM. I was prescribed vicodin and yes it did make me feel very good but the pain still persisted and I had a feeling as to what may have been causing it. Back in September when I was given a month and a half off from chemotherapy, I suddenly developed severe heartburn. I then took one of the antacids, where you take it daily for only a few weeks and then it should control your heartburn for about four months. Right before my last ICE treatment which passed the four month mark, my stomach pain suddenly stopped. Apparently, since chemotherapy affects your digestion, the antacid compounded the problem. So, my word of advice, don’t take any of the long term antacids when you are on chemotherapy.
I was suppose to finish ICE by mid January but with my blood counts dropping so low after each treatment, I didn’t finish until the first week of February. I then had to wait another month until the next PET scan. Despite that the second PET scan back in September showed no signs of cancer, I was still nervous about what was going to happen next. Without radiation, normal treatment was suppose to be eight cycles of chemotherapy. I had only six so far. I dreaded the possibility of having two more cycles of ICE.
During the following month everything slowly returned to normal, relative of course. After having ICE, the process was slow. I didn’t feel that well until right before the PET scan, but eventually the blood counts returned to normal and the liver and kidney tests showed no signs of any problems.
On March 3, 2010 I had the PET scan. Right before the test I talked with the doctor and he recommended that I should see the radiation oncologist for an opinion on possible radiation treatment to the groin area. Two days after the scan I was scheduled to see the radiation oncologist but he cancelled the appointment when he got the results from the scan. He said that I was fine, that I didn’t need any further treatment. On March 11th I had my final appointment with the doctor. I was finally declared in remission. This was good news to hear and a relief. He said that I responded so well that the full eight cycles was not necessary. However, he did have one warning. He was concerned since I now had two types of Hodgkin’s over the past fifteen years. He told me that I may now have to consider having a bone marrow transplant, but this is not something I have to have right away. It could be done at anytime but definitely it will have to be done if the disease comes back. Obviously I hope I don’t get it again but if I do, the next experience is going to be completely different.