It’s Wednesday so that means I go see my transplant doctor. Looks like I’m doing well. The virus I had that started with a C and that 80% of people get is gone. My GVH also appears to be gone. My blood work is good. White cells are a little down because she’s weaning me off the steroids. Hemoglobin is good so no blood transfusions needed. Platelets are MUCH better; they’re over 100! I asked if I could floss now, and Dr. F said yes. I am thrilled; my teeth feel icky. I am so used to proper oral care that even after brushing my teeth, I can feel stuff between them. I am totally getting floss this week; I didn’t bring any because the book states that flossing is not allowed because it can cause bleeding and anything that can cause bleeding is bad.
I can also eat out in restaurants! I have rules. No fast food. It has to be a sit down place. Food must be thoroughly cooked, so I don’t plan to have a steak since it has to be well done and I’m no longer a fan a shoe leather. No salads. No places like buffets or places where they scoop food. The hardest thing will be no fountain drinks. In fact, I would warn everyone against fountain drinks. I’m not allowed to drink them because of the cleanliness of the tubes. Those tubes do not necessarily get cleaned enough and bacteria can build up causing problems for my immune system (or anyone else’s). When you think about it, dirty tubes are nasty. It’s the same with ice cream (no scooping) and soft serve (tubes), but Dr. F says it’s okay if they make the milkshake in front of you – fresh.
As for the Gleevac medication, I will be taking it again so hopefully I wont have issues. We pretty much learned what I could tolerate last time, and Dr. F really listened; plus, she has documentation from my oncologist back home showing my trouble with it the first time around. The purpose is just to make sure the ALL doesn’t return. I may not really need it; it’s just in case. I’m not part of a trial, but one is currently going on and she says the results will determine how long she keeps me on it. Next time, I’m going to ask when they might have those trial results.
Dr F was also super happy because my bone marrow results are all in and still show all zeros. She even circled them! She says I do not have any ALL. The zeros are important because she told us that at the end of the number series there are often a couple positive numbers, but mine are all zeros so there’s absolutely no signs of cancer.
I would say overall, it went really well. I’m definitely in a good mood and really looking forward to being able to eat out again. Mom and I are going to a mall tomorrow and now we won’t have to come home for lunch; we can eat there. Plus, I’ll get to try some new food. Whenever I get to do something “normal” I can’t help but get excited. The boys are coming Valentine’s Day weekend and it would be great to go out with them. We’re thinking of the MOSI science museum that’s nearby and Dr. F. said I can go to the movies (she brought it up; I didn’t even think to ask) and the PA told us about a place that has big leather chairs and waiters because you can eat dinner there. It’s not the cheapest, but sounds neat because he said you have tons of space and aren’t really next to anyone. It’s just nice to lose some of my limitations. It feels good and really allows me to exercise without feeling like I’m exercising. Becky, my PT most of time, told us Tuesday that walking is really the best thing I can do. We did cool things with some new machines, but walking works out a lot of what I need.
Oh, I almost forgot, there was one more thing the doctor told me. Even though she believes my GVH is gone, she warned me to watch for “flare ups” – diarrhea, vomiting, new aches, rash, fever or anything out of ordinary. I can’t do what most of us do anymore when we feel “off”; I have to call and although having GVH is fine and wanted, once I have it, we want to make it go away. There’s no way to know when and if I’ll have a flare up. It could be weeks, months, or even a year. She said that usually the first year has the most flare ups, but it is still possible during the 2 year or even 5 years in the future. The most probable time is the one year anniversary of my transplant. Again, I could have few; it all just depends of me because everyone’s different.
Now, I wait. I continue with my normal weekly schedule. They took me off of isolation, but I still have a little bit of a cough. No pain and I do feel good. It’s so nice to not be super sick anymore, and hopefully I won’t ever have to back there. It’s all time and waiting, but mom and I are keeping busy. I literally do find myself happy at times, but I’m always missing my boys and my family.
THANK YOU! THANK YOU! THANK YOU! to all my family and friends that are supporting my family and I through this difficult time. Your prayers and support have no doubt had a huge hand in carrying us through this.
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Jamie–How wonderful to have such good news! I can “hear” your smile through your words. I will pray for continued improvements day by day for you and that God will give you the strength and courage to keep on keeping on…Have a wonderful time with Joel and the boys over Valentine’s Day!
Kay
Wonderful! We are so happy for you!
Awesome news Jamie! Still wearing the “Faith, Courage & Determination” bracelet for you!