We didn’t have much time to sit back and relax after a busy weekend because this week started off quite early on Monday morning in order to be in the operating room by 5:30am. I wasn’t allowed to eat or drink after midnight, and I hadn’t really eaten dinner Sunday night so I was pretty hungry. In addition, we knew that it was going to be a long week because I had to be in clinic every day, and between the two medicines I needed and the fluids to go along with them, each visit was guaranteed to be at least 4 hours. I talked to the port doctor and the anesthesiologists (spelled that right on the first try!) about all of the possible risks, and signed the forms because what else is there to do? When I woke up a few hours later, my chest hurt and I felt extremely nauseous. I spent the rest of the day unable to keep food down. I took as much oxycodone as they would give me and went back to sleep as soon as I got up to clinic for my chemo. The chemo I was getting had the potential to be damaging to my bladder, so they gave me a ton of fluids and insisted I go pee all the time. When moving my upper left side is excessively painful, this isn’t much fun. As it turns out, it wasn’t much fun later in the week with less pain either, but it was better. Anyway, the fluids are room temperature so I was freezing. Luckily, there is a blanket warmer, so every time I asked for another blanket, I got a warm one to add to the collection I already had on top of me. Despite the residual anesthesia and the high doses of pain medicine, a doctor came to talk to us about the transplant process. He was actually my doctor the first time around, so we already knew each other. He knows more about the transplant process than the doctors originally assigned to me this time, so he told us a lot more than we knew from the meeting about the recommended treatment path. Unfortunately, that meant about an hour of bad news. Remember that train that ran over me when they told me they’d recommend a transplant? Well it came back and ran over me again. He told us that the ostrich method (where you bury your head in the sand and pretend none of this is happening, which is my mom’s preferred method at times) is not a good idea and then proceeded to tell us all of the risks involved. The transplant phase begins with a preparation week, which involves 4 days of high-dose chemo and 3 days of total body radiation. After that, they harvest (their word, not mine) my sister’s bone marrow and infuse it through my hickman. The goal of the pre-transplant week is to kill all of my bone marrow, so only my sister’s will be there. When the doctor mentions a “fatal dose of radiation,” it doesn’t matter how much your chest hurts or how many pain meds you’re on, you are wide awake. He continued to explain that if I received that much radiation from an atomic bomb for example, it would kill me, but those atomic bomb victims don’t receive new bone marrow. Either way, I’m sure you’re understanding my fear by this point. The radiation kills fast growing cells, like bone marrow, leukemia cells, digestive tract cells (all the way from the mouth to the intestines), and potentially egg cells. I’ll put the fertility adventure in a separate post so the guys out there can avoid it if they’d like. Then again, if you need a reminder of how lucky you are, it might be perfect for you. After radiation kills my mouth cells, I’ll have mouth sores and won’t want to eat. A few days later I’ll have throat sores too. IV nutrition is almost a definite, which upset me a lot at the time but now that I’m realizing the alternative is hospital food, maybe it’s not that bad. I’ll have plenty of opportunities for hospital food later, because I will remain in the hospital until my sister’s marrow begins to produce cells for me, a process that generally takes a few weeks. Once my counts are high enough, I can leave the hospital, but they don’t want me more than 20 minutes away for 100 days post-transplant, so about two and a half months after I’m discharged. My house is about 40 minutes away, and considering the transplant will probably be mid-November, this means I won’t be home for Thanksgiving, Christmas, New Year’s, or the birthdays of my mom, dad, and sister. I came home from college for all of those last year, so I can’t even say “I would have been away anyway.” After 100 days, I can go home, but there will be lots of limitations until 6 months post-transplant, and potentially up to a year. The tricky thing with transplants is balancing the Graft vs. Host Disease (GVHD) with the Graft vs. Leukemia effect. I will be on immune suppressing medication until my body and my sister’s cells learn to live together. Until they can get along, they could cause a lot of organ damage if not properly medicated. However, a little fighting is good, because just in case the pre-transplant week didn’t kill quite all of my leukemia cells, her cells will attack them. It’s a fine balance of killing the cancer and not my organs. This whole process terrifies me because of all the potential complications, some of which I’ve seen become reality for my friends. However, I know there are lots of healthy transplant patients walking around that I don’t even realize had transplants. If you or someone you know had a transplant, I’d love to hear more about the experience. I’ve talked to a few people but would love to talk to more. I’m sure there are lots of people at camp, but I don’t know who. That’s enough scary news for one day, though if I think of more later I can throw it in a future blog post. Back to this week, my nausea continued through the week but I could eat crackers. I started eating a normal dinner, and then eventually a normal lunch too, though I still eat graham crackers for breakfast every day. Part of the problem is that I used to always eat cereal, but I still don’t like milk. My go-to cereal was also cinnamon life. I like it even without milk, but it has a lot of folic acid which isn’t good with one of the medicines I get frequently. My port has a quarter-sized portal that is in my chest and has a tube that runs up to a vein. They used the same scar as last time which was much appreciated but my chest was so sore that I couldn’t use my left arm for much of anything. Changing positions from laying to sitting or sitting to standing was difficult and I couldn’t sleep on my sides for a few days. It was a rough week, but as the pain got better I only had the chemo side effects to deal with. This chemo makes my counts drop, as they all do, but to make sure they don’t get too low, I have to get a shot each day to stimulate white blood cell growth. My mom got a lesson in subcutaneous shots (and my sister was quizzed on how to spell subcutaneous, which she picked up very quickly). I can get the shots in my stomach or my arms, but I chose arms and we alternate every night. I had the option of doing them myself, but no thanks. I chose the title of this post because one of my friends texted me every day to ask how I was doing, and every day my answer was “better than yesterday” plus a little elaboration. One night he told me that at my current rate, I’d be running marathons in six months. It gave me a laugh, but it was even better when my mom read an article about a guy who actually did run a marathon 10 months after receiving a transplant. That made us feel a little better about the whole process. I’m sure that’s not the norm, but that’s fantastic. Things continued getting better each day through the weekend, though by that point I had acquired quite the armful of bracelets. One of my friends was in clinic on Friday and he knew where they keep the good cookies in clinic. I also had the opportunity to talk to another transplant patient, and although her experience was a bit different than mine will be, talking to someone about the whole process made me feel a lot better. This weekend, a few of my other friends were home for fall break, so I got to catch up with them too. It’s nice to have normal weekends with friends and family to break up the weeks full of chemo and clinic visits.
Thank you, as always, for the continued messages, cards, thoughts and prayers. The next few months are not going to be easy and they’re not going to be fun but I know there are so many people out there helping us all through this. I can’t imagine having better people in my life, I love you all!
34 Comments
Donna
10/22/2013 10:13:14 am
Thanks for the updates Karen - you are truly inspiring. Many prayers and thoughts for you every day. Much love too.
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Irma
10/22/2013 04:25:17 pm
An interesting and witty respone to a challenging time. Enjoyed the read. Channeling love and good wishes your way.
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Marilyn
10/24/2013 09:06:13 am
Karen,
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For 10 years you have been my heroine. Your courage and spirit can never be matched. You have my number. Anytime ...
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AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
April 2022
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