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HSCT - The Journey Continues

Updated on May 11, 2015

Evaluation - Chicago Bound

I first became aware of HSCT in April 2013 by a friend on Facebook. I had recently be diagnosed with CIDP, Chronic Inflammatory Demyelinating Polyneuropathy. Man, that's a long name and not easy to spell sometimes, but when you talk about it enough through blogs and facebook posts, it becomes second nature. I was on a support group page for CIDP patients and someone mentioned HSCT. I had no clue what it was and inboxed that person. She told me all about it, her experience, where to get it and gave me the link to the Doctors website. Come to find out it was through a very well known teaching hospital, Northwestern in Chicago by Dr. Burt. This man is an angel sent straight from Heaven. I submitted my application in July of 2013 and got the phone call a month later. The almighty one wanted to see me for an evaluation in October. I was scared, but jumped at the chance to see if I would be a candidate for this procedure. I booked my ticket for October 7-13. My appointments to see Dr. Burt and the neurologist he works with were set for October 8, 9, & 10. The rest of the time was spent exploring Chicago.

I was in awe of meeting Dr. Burt, he was like a celebrity to me. The visit was short, he asked questions about my symptoms, when they started and asked about each treatment I had tried and what drugs had been prescribed. The only two treatments I had tried were Prednisone and IVIG. Neither worked for me. I could tell that I wasn't getting worse, but I also was not getting better, until October, right before going to see Dr. Burt. I noticed that my hands were getting weaker, I could no longer style my hair, I had to brush my teeth using both hands to hold the toothbrush. I could barely pick up a glass to drink from and typing was becoming difficult, not to mention writing, my writing looked like a child's writing. When I saw Dr. Burt he was kind, yet serious, he looked me right in the eyes and said, "Nobody has ever died from this, but somebody eventually will and that person could be you." I looked him right in the eyes and said "Ok, Im in." At that moment I was not afraid of death, there were too many days that I would lay in bed begging for God to take me. I was done with living with this disease, but God had other plans for me. This was when my relationship with God got really close. I believe 100% that I had angels watching over me and had his guidance the whole time. When I left Chicago and came back home, I had no idea yet if I was accepted or not. It was a little over a week when I got the phone call.

October 22, I received the phone call from Dr. Burt's office that I was approved by my insurance to have all the pre-testing done. Time to go back to Chicago. Booked my flight's for November 9-16.

Pretesting, Chicago Bound

I went back to Chicago in November 2013 for all of my pretesting. The pretesting lasts for a whole week, but the days are short and there is plenty of time for exploring. Monday was set aside for a CT Scan of the sinus with and without contrast, CT of the abdomen at 8:15am November 18, Arkes Family Pavilion at Northwestern Memorial, 3rd floor. Strict instructions not to eat three hours before. I remember when I went for this test they made me drink some kind of liquid stuff that tasted like bananas, kind of thick and a little chalky.

Next test was a chest x-ray and an EKG, then I had a break to finally get something to eat. I had to be back at 1:30 for a Pulmonary Function Test. This is where they make you breathe in to a tube to see how well you can breathe in and out and how much air you can hold in your lungs. After this test, I was done for the day and spent the rest of the day exploring parts of Chicago on the Magnificent Mile. It was pretty cold outside so I tried to stay close.

Tuesday Nov. 19, 2013 (8:30am)

MRI (Complete Spine) Galter Pavilion, Northwestern Memorial Hospital

The MRI was probably the worst part of all the pretesting. It lasted for a good hour and a half being pinned up inside a long, loud tube with a cage over your face. I remember it got really hot inside the machine. The tech asked me what music I wanted to listen to and I chose Mumford and Sons, one of my favorite bands. It helped get me through most of the MRI, but I had to have them roll me out to cool down toward the last 30 minutes. It's hard to lay still for that long, especially when it gets hot.

Next stop after the MRI was to the lab to get my blood drawn, no appointment necessary. This takes about 20 minutes once your called to the back room. They take anywhere from 20 to 30 vials of blood to test for everything under the sun.

1pm, Vein Check at the blood center. This is kind of misleading because they don't actually check any veins at all. They take you to the back office and show you the apheresis machine that harvests your stem cells from your blood. They ask you a lot of questions about your health history and send you on your way. Very confusing because you're sitting there the whole time wondering when they are going to check your veins.

The rest of the day was spent doing more sightseeing. Due to the fact that I have been on prednisone for a month by this time, I was able to walk further and longer with very little issue and this time, no scooter was needed.

Wednesday, November 20, 2013 12pm, Visit with Dr. Burt. I wasn't sure what to expect during this appointment. Dr. Burt said my MRI looked goo as well as my CT Scan although, the CT scan of my abdomen showed some kind of abnormality with one of my ovaries. That required further testing that couldn't be scheduled while I was in Chicago so, I had to have additional tests in Austin.

Thursday, November 21, 2013 9:15am 2D ECHO Galter Pavilion at Northwestern Memorial, 9th floor. The 2D ECHO actually wasn't too bad, the do a sonogram of your heart and valves to make sure your heart is in good shape. My ticker passed the test with flying colors.

Friday November 22, 2013 Appointment with Cardiologist. This was another easy visit. He confirmed that my heart was in good shape and asked if I had any questions. He lectured me on my social smoking and told me if it wasn't an addiction then it should be no problem not to ever smoke again. Apparently this guy doesn't smoke and drink at the same time, although I have not stopped that habit, I have cut back on the drinking which mean less smoking.

Saturday November 23, 2013 Time to go home, flew back to Austin in time for the Thanksgiving Holidays and now, I get to sit back and wait for the news, to see if my insurance approves me or not. I also had to schedule an ultrasound of my ovaries since something came back abnormal in Chicago. I was also informed I need to have a colonoscopy done, yikes. I was not looking forward to that.

December 6, 2013. I will never forget this date. I received the phone call from my insurance that they would cover the stem cell transplant. That was the best news I had heard in a long time. I had no clue how I was going to cover it if they would not have agreed to do so. The cost of the transplant is a minimum of $125K and once I was finished with mine I received a statement of $201K. Insurance covered 100% of it. I was so thankful Aetna said they would cover it, I remember crying when I hung up the phone. It was overwhelming all the emotions I experienced all at once. Excitement, fear, joy, sadness, you name it, I felt it. I was excited to know I would have the chance to get rid of this monster that was taking over my body, I feared that I might be the one person who died from this since there was and is a chance of that happening, I had joy because I saw the light at the end of the tunnel and sadness because I was afraid of being away from home, stuck in a hospital, going through chemo, alone. Today, the transplant became a reality and there was no turning back now.

Over the next few weeks I scheduled dental appointments for the following month and my colonoscopy for New Years Eve. Note to self, do NOT schedule any kind of testing on New Years Eve. The year before I had scheduled a spinal tap and couldn't enjoy the festivities of the evening, this time around I was told I could drink as well. Not sure why that was, but I followed the rules. At least I was still able to get out of the house.

Mid January some friends had a fundraiser for me and the money raised help cover the dental bill I had two days later to get a couple of teeth pulled. I couldn't just have a normal dentist pull the teeth, because I have a nerve disorder, the dentist required that I go to an oral surgeon and that makes the prices go up several hundred dollars. Once I had my dental clearance, I was good to go. I was scheduled to go back February 2nd to be admitted February 3rd for mobilization. The mobilization requires a one night stay in the hospital for a round of chemo. The chemo they use is Cytoxan and I handled it pretty well. My mom, daughter and granddaughter was there for support and spent most of the first day in the hospital with me. The next day I was released and went back to the hotel room. It was even colder in February than it was in November, close to 4 degrees outside, some days even colder. Needless to say, we didn't get out much. It's not easy getting around in cold weather like that with a 16 month baby. That Saturday, February 8, 2014 my mom flew back home to Oregon and I started my Neupogen shots. The neupogen helps stimulate baby stem cells to come out of the bones in a mass amount. I had to take these shots for 6 days. That same day, Chris flew in from Austin. He was my rock through this whole ordeal and I probably could not have done this without him. He got to see my granddaughter Willow and spend some time with her before she flew home on Tuesday. We took Hailey and Willow to the Shed Aquarium and enjoyed every minute of it and the day they left was heartbreaking because I had no idea if I would survive this and ever see them again. That night, Tuesday February 11, I started experiencing the bone pain everyone talked about. At it started out in my lower back and felt like labor pain. I thought I could just tuff it out and not take any pain killers. Chris and I went for dinner that night at Jake Melnick's, home of the best wings in Chicago. My opinion, they're the best in the whole world. The back pain started to get worse at dinner and I wasn't sure if I would even be able to make it back to the hotel room without any issues. Luckily, the walk back actually helped with the pain and as soon as I got back to my room I caved in and took the Norco Dr. Burt prescribed. It bare ly touched the pain so I took extra strength tylenol too and that seemed to help a lot. Chris and I curled up in bed and watched the Olympics. it was hard trying to get any sleep that night and at one point I got up to get my pain meds. BIG MISTAKE. I sat on the edge of the bed for a few seconds to let the blood flow to my head get back to normal and then I stood up, made sure I had my balance and started walking out to the kitchen. What's wrong? I'm not feeling so well, I feel a little lightheaded and I decided to lean up against the cold wall. Next thing you know, I woke up on the floor. I passed out and went straight to the floor. When I came to, I crawled back to the bed and woke Chris up and asked him to get my meds for me. Lesson learned, from now on, Chris will be woke up to get what I need. No more trying to be the tough girl and do it myself. The following day was more pain in different areas. This time it moved to my arms, legs, shoulders etc. I literally felt like someone had taken a baseball to me and beat me up. This was horrible and I never want to experience that again. That thursday I took my last shot and went to the blood center to start the harvesting of my stem cells. I had a vas cath inserted in my neck, blood work done and waited for results to go ahead for harvest. While going through the harvesting of the stem cells you are connected to a machine and you are not able to get up and leave until you are done. The goal is to collect at minimum, 2 million stem cells and this process can take 4 to 6 hours. When I was told I wouldn't be able to get up to go to the restroom, I stopped all drinking of any liquids. That seemed to be the longest 6 hours of my life. They finally unhooked me sometime between 4 and 5 and I had to wait for them to count the stem cells before they took out the vas cath. 5.5 million is what they counted. Hallelujah, I would not have to come back the next day to collect more. They removed the vas cath and I was free to go. This time, instead of walking back to the hotel, we caught a cab. The rest of the evening we stayed in and rested. The following day was Valentine's Day and unfortunately it was too cold and we were to broke to go do anything. We spent the day in the hotel room watching the Olympics and other shows and just napping and relaxing. I loved every minute of that day and it was probably the best Valentines day ever. The following say, Saturday the 14th, we flew home to Austin. I decided to come back home during the break between harvesting and the actual transplant. I did not want to live the next weeks in a hotel room, I was ready to get home and see my dog and sleep in my own bed. This would be the best night sleep ever. The next morning was a bit of a shock. I saw hair on my pillow. I got up to look in the bathroom mirror and pulled on my hair, it came out in clumps. I felt so sick to my stomach. I knew this would happen, I just wasn't mentally prepared for it. I left it alone and went about the day except, I couldn't really fix my hair since it was falling out, I always had hair hanging everywhere and out of place. That evening, I finally decided to take the plunge and had Chris buzz it all off and then shave it with the razor, I was bald and it was WEIRD. I didn't really know what to think of it and felt so self conscious. Two days later Chris shaved his head and went bald with me. That made my heart happy because now I didn't have to worry about what I looked like because he looked just as silly, except, we didn't really look silly at all, we both looked pretty damn good.

The next several days were spent resting and preparing for the final trip back to Chicago for transplant. I flew back on February 26th with my friend Cristi. She was my caregiver this time around and she arranged for a friend of hers to pick us up from the airport in Chicago. Her friend Rhea was there shortly after we landed and gave a great tour of a few places, we got to visit a new store called Eataly and went to another place for some appetizers and drinks. The following day I had to go to the hospital to have a triple lumen picc placed in my arm to prepare for the chemo and other fluids during transplant.

Thursday, February 27, 2014, the beginning of the end. I was admitted into Northwestern Memorial for my transplant. I got there around 7:30am, met another patient who was there to get her transplant for Scleroderma and we were wheeled to our rooms. I was lucky enough to have a room that overlooked Lake Michigan. Around 1pm they started the chemo and this time around I was given Rituxan. About an hour into it I started feeling really weird, my throat was getting itchy, I felt hot, my throat felt like it was closing up, my voice started changing and I felt as though I sounded like Kermit the Frog. Once I informed the nurse how I was feeling they immediately stopped the chemo, no more rituxan for me. After all these years of not being allergic to anything, I finally found something I am allergic to. Now what? How would this affect my transplant? You receive Rituxan a couple of times during the transplant and now they had it in my records not to administer. The next day's chemo cocktail was Cytoxan with rATG. rATG is rabbit anti-thymocyte globulin, used to prevent or treat graft versus host disease. Although I am using my own stem cells, its better to be safe than sorry. The next few days will consist of this cocktail and from the day you are admitted, you count from day -6 all the way to day +10. Day -6 was the horrific Rituxan episode, Day -5 through Day -2 is Cytoxan and rATG. I believe it was Day -5 that I started feeling the effects from the chemo. Nausea, loose stools that caused a couple of accidents, lethargy, loss of appetite etc. Cristi went home on day -2, which was Saturday May 1st. The next couple of days I was there alone. This was good and bad. Good that I had time to myself, bad because it was lonely. My days were spent laying in bed watching TV, I may have gotten a few times here and there to walk the halls and visit with other stem cell patients, but it was still lonely and not much to do. I remember sitting in my windowsill looking out over the lake and reflecting back on everything I had been through so far. Some friendships were slipping through the cracks because some of my friends just didn't understand what I was going through, or had been going through the last couple of years. My job that I lost that previous September because I just didn't have it in me to get out on property and do what needed to be done. My family who seemed to be there for me when I needed them the most, considering I have never had a really close relationship with my mom, this made my heart happy. My daughter who wanted to make sure she was there to see me one last time, just in case things went south with this process, letting me see my beautiful granddaughter and spending time with her, gosh how I missed her cuteness at that moment. There was so much to be grateful for, I have been given a second chance at life, another chance to feel alive again, although I felt like crap at the moment.

Day -1 and Chris shows up. I wanted him there for transplant day. I had asked Dr. Burt during the pre-testing phase, when the most important time would be to have someone there in case things went south. What was the most detrimental day during this whole transplant. He said it would be around Day 0 and Day +1, that is when your immune system is at its lowest. I remember getting the biggest smile on my face when Chris showed up, finally I had company again. He was so wonderful and such a saint. He took such good care of me, anything I wanted, he took care of it. I have some big shoes to fill if he ever gets sick.

Day 0 - March 5, 2014. This is stem cell transplant day and is considered my "New" Birthday. Awesome, now I get two birthdays a year. At 10:00am I had my stem cells blessed, this was very important to me because this whole journey brought me closer to God, I felt it right to have them blessed and to hope for the best results. 10:15, stem cells were thawed and transplant starts. The whole process only took about 15 minutes and it was the most uneventful 15 minutes known to man. I had a weird taste of cream corn in my mouth from the stem cells, it was a very weird taste.

After the transplantation of the stem cells is when things started to get interesting. I don't really know what was going wrong, but it definitely wasn't good. My blood pressure was raised, I hard a hard time breathing, especially when I would lay down, causing me to have to sleep at an incline. It was a concern for the nurses to the point that they called Dr. Burt in the middle of the night to update him on my condition. He ordered a chest x-ray and an EKG. 3am, Chris gets kicked out of the room so they can give me the x-ray right there and an hour later I get the EKG. Everything looks okay from what I heard at that point. I really don't know why I was having such issues. Later, I realized it could have been caused from all the fluids that my body was retaining. Two nights in a row we dealt with this and at one point it crossed my mind, "What the HELL was I thinking to want to have this done."

Chris had posted on his facebook page a couple of days later, "Update on Stacey Turley DeMatos. She's doing better today. Dr. Burt thinks she's over the worst of it and is taking her off the oxygen and heart monitor. Vitals are back to normal except the heart rate which is down to around 100 from 120. Her platelets and blood cells count is still low so she's getting blood right now and more platelets next. Finally, she's getting a little of her appetite back, having just had Cheerios and yogurt for breakfast. I apologize if I scared anyone yesterday. I was a little scared myself, but she seems to be doing much better this morning. Even got a laugh out of her this morning. Love you guys and thanks for all your support. It's really made all the difference in this side journey we've been put upon.

Let me say this again, I do NOT know what I would have done without him by my side, supporting me, through all of this. Looking back now and reading his facebook posts that I completely forgot about, makes me cry. I forgot how compassionate he was through this whole ordeal. Makes me fall in love all over again.

By this time, we are now on Day +3 and it's time for Chris to go home. Bittersweet moment because I really don't want him to leave, he made sure I was taken care of and made sure that I ate something each day, even if it wasn't very much, but I was also craving the alone time. He was never a bother to have there, he was so good about letting me nap when I needed it, but deep down, I always felt like I needed to entertain him. My issue, not his. Chris is so easy going and really does not need to be entertained, but my brain told me that I needed to keep him company so he wouldn't get bored. Once he left, I napped and watched a lot of TV and movies. I was so ready to be done with this and go home. I learned over time that I HATE being in the hospital. I am such a free spirit and need to be on the move all the time and being in that hospital, sick and weak, made me feel like I was a caged animal. I crawled back into the windowsill again to do my thinking. When looking out that window over looking the lake, watching the snow fall, the lake frozen with sheets of ice, it looks so dreary and depressing and I'm thankful that at least I'm alive to experience this life changing procedure. I tend to throw the occasional pity party once in a while and this was one of those moments. As thankful as I was, I was also depressed and sad. Why did this even have to happen to me to begin with? Where were my friends who said they were there to support me, very few of them reached out to me while I was there. Complete strangers, friends with Chris, sent me cards, some of my friends did, and when I got them I cried. I remember a nurse walking in when I was reading some of these cards and I was embarrassed, but I paid it off. I think looking out the window at cold, dark days and lots of snow and ice, brings some dreadful, depressing thoughts. From that day forward, I left my blinds shut and I don't think I really looked out the window again, or not much, after that day.

The following days became a blur, the same old stuff each day, lots of naps, blood transfusions and platelets. Nothing to do except sit in the chair and watch TV. The highlight of each day was my shower. When you feel so bad that it feels as though a truck ran you over, a shower feels like a little slice of heaven. I named my shower Chris because when I was sitting in there one day, I thought, "What is the best thing in my life right now that makes me feel on top of the world?" The answer was Chris, so that's why I named my showers Chris. That's how good they made me feel.

Fast forward to day +10. I got the word around 11am that I was free to go. All I had to do was wait for my discharge paperwork to be done. I had requested my friend April to arrive that morning or the night before, but she hesitated on booking her ticket and was not due to arrive until later that evening. I was a little nervous about being discharged. I was at my weakest. I had no shoes that would fit on my feet from all the fluids my body retained, I felt like pure crap. I craved sleep, a nice comfy bed that I could crawl into and shut the rest of the world out. I did get help from the hospital staff, but all I had on my feet were socks and I was embarrassed going on in the freezing cold weather with nothing but socks on my feet. I survived though.

I arrived at the hospital and went directly to my room, I did not pass go. I waited for about 15 minutes for my luggage to be delivered and as soon as the guy left my room, I crashed on the bed. I did not wake up for 3 or 4 hours. I really don't reember exactly, all I do remember is that I had the best nap ever. No nurses interrupting me, no phones ringing, no noise in the hallway, it was pure bliss. I was able to move myself to the couch and made myself comfortable and watched some TV while I waiting on my friend April to arrive. I think she finally got there around 8pm. She came with Fruit Loops in hand, she's the best. I did not have much of an appetite, but I always made room for some fruit loops or any other kind of cereal. The next few days were a learning experience.

I was released from the hospital on Saturday, March 15, 2014, my flight home was scheduled for March 19. I wanted to stay in Chicago for a few days in case I had any kind of major issues. Some people run fevers not long after being released and if that happened to me, I wanted to make sure I was close by so Dr. Burt would be there to look over me.

March 18, 2014. My transplant sister, Brenda Lou showed up for her 6 month evaluation and it also happened to be her birthday the following day. I had been following her through her whole transplant process and when I went through mine, she was there through facebook and text messages the whole time, checking in on me and making sure I was ok. I finally got to meet her and was so excited. Brenda went through her transplant in October 2013. I was there going through my evaluation and tried to get up to the hospital to see her, but did not want to intrude and while I was there, she really did not feel like company. I understand now after going through it myself, but back then, I was so let down that I wasn't able to meet her. Well today, I finally get that chance and she had warned me that she would kiss me all over my face. She fulfilled her promise and gave me the biggest hug and kissed me ALL over my face. It felt so good to make a connection with someone who went through this before me. That night we went to dinner across the street from the hotel, at Rosebud Steakhouse, for Brenda's birthday. Me, April and Brenda were sitting around the table after we finished eating and were taking selfies for the memories. There was a very sweet girl who came up and asked if she could take our picture so, we gave her April's iphone to take the pictures with. This girl asked us not to look at the camera, just look at each other and act more natural. We thought she was crazy, but we did what she said. The pictures came out great and we found out afterwards that she was a professional photographer. She offered to take our pictures the following day, but I couldn't make it because I had a flight to catch. March 19, I flew home to the comfort of my own home. Life was good.

Life After HSCT

My life after the Stem Cell Transplant....

The first year was an emotional roller coaster.

The first 6 weeks home were miserable as I was at my weakest, even before I went into the transplant. I was so weak I couldn't even step up on a curb. I napped a LOT and just didn't have the desire or energy for anything. Once I hit my 6 week mark I decided it was time to go to Physical Therapy. I knew I wouldn't get better as fast as I wanted to without Physical and occupational therapy. I settled for Concentra in South Austin because they offered PT and OT under the same roof. Most places only offered one or the other and I did not want to go to two different places. I had a really bad attitude at first because I really didn't feel like explaining my story again, but knew I had to suck it up and deal with it if I wanted to get better. The physical therapist I had was awesome, definitely made it worth every moment of therapy. He was a little on the awkward side, but funny at the time. lways cracking jokes. I really did know how to take him, but he made it fun. Occupational Therapy was a big snore. My therapist was sweet and I really liked her, but the session itself was BORING.

Fast forward to September 4, 2014. I was able to get back on my bike and ride. I haven't been able to do this for over a year because I wasn't able to balance myself enough to get my leg over the bike. This was a moment to reflect, once again, on the gifts I have been given. I bought my bike about 7 months before I got sick, I only had the chance ot ride it a handful of times because of the weather. Once the weather got better and good enough to ride, I got sick. I had to retire my bike and watch it collect dust in the garage so, when I was able to pul it out of the garage and test it out I was on top of the world. This was the start of the reversal of symptoms.

I did notice another reversal of symptoms a couple of months before I rode my bike. August 1st, I stopped wearing my AFO's. This was the best thing ever known to mankind. I hated wearing those things. After I was released from the hospital, I told you that I was at my weakest. I couldn't really walk without assistance. On May 5th, 2 months after my transplant, I met up with some friend to celebrate the day. On my way through the parking lot, I fell. I skinned up my knees pretty bad, worse than they had ever been. I was in extreme pain and blood was running down my leg. A couple of days later, I went to see my doctor and he begged me to wear my AFO's. Afterall, i didn't want to break a hip after everything I had been through, right? I sucked up my pride and wore them, to spare my hips and any other body parts that could have been hurt had I fallen and broke something. I wore those things for 3 months with shorts, skirts, dresses, you name it, I had NO shame. wearing them and I knew they would help me get better. After 3 months, I noticed I was walking okay without them so, I decided to go without and haven't worn them again since. My foot drop has reversed itself and I am walking normal again. Praise God for my gift.

I went back to Chicago in October for my 6 month check up, even though it was at 7 months. I wanted to be there when Brenda was going to be there and this time, another woman with CIDP, Donna, was going to be there as well. My friend April went with me so she could see Brenda again and we had a blast. Everyone got along great and we had so many stories to share with one another. When I saw Dr. Burt, I asked him if I could give him a hug. I was so thankful for everything he had given back to me through this transplant. I told his nurse, Paula, that I would soon be sending them a video of me running, I had high hopes. I actually tried running in the hallway of the hotel and it just was not going to happen, not at that time anyway. My visit went well, my EMG and NCV showed some improvement, but a significant amount, but I had told Dr. Burt and Dr. Allen that I was happy with the recovery that I had experienced so far and if I didn't get any better than I was at that point, I would be okay. I could walk without assistance, my hands were back to normal, I could type and write and life was good. Little did I know, I would be running within 2 weeks after that visit.

I sent Dr. Burt's staff a video of me running and Paula asked if Dr. Burt could show my video at his conferences if he chose to. I was all for it, if it wasn't for him, I wouldn't have that to celebrate to begin with. I really haven't ran again since, but its nice knowing I could if I wanted to, or needed to.


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