While I’m patiently waiting to pick up a script for my pain medication, I figured I’d start part 2!
So to pick up where I left off. My translocation of 9 and 11 meant that my prognosis was moderate. Some people are able to do another round of chemo and hopefully that will keep their cancer at bay for the rest of their lives. I was not so lucky. My doctor in Saint Louis felt that my best option for survival and to keep the cancer at bay for as long as possible would be a bone marrow transplant. They checked the national registry (which I’d encourage all people to check out the site http://www.bethematch.org) and international registry and they were unable to find even one match for me.
They decided to test my sister because sometimes among siblings they’re able to find a full or very close match. Amanda matched me 6 out of 10. Not great, but my best option thus far. Saint Louis gave me the option of being able to do my bone marrow transplant there, or I could find another hospital to do it at. They gave me a list of all the hospitals in the country and I was able to chose.
I think my parents probably would have preferred to do my treatment at the University of Penn but I didn’t think I could be away from Paul for so long. I found out that the University of Kansas Medical Center actually specialized in Bone Marrow Transplants and they were nationally ranked in the country for cancer. I believe they were ranked 29th in the country at the time. They had their own bone marrow clinic, beautiful facilities, and the icing on the cake was they were only 2.5 hours away from my home here in Joplin.
Paul took me to my first appointment at KU for them to do my medical workup and they also agreed that I should get a bone marrow transplant. I did my third bone marrow biopsy there, actually in the clinic. It showed that I was still in remission and that indictated that it was time to get the ball rolling.
After you have a bone marrow transplant, you need 24/7 care from a care giver and you need to be within 30 minutes of the hospital for the first three months after they release you. So we picked out a nice little apartment in Mission, Kansas that my insurance paid for. My mom and sister flew down on May 10th and my sister began her workup.
She proved to be healthy enough but at the time she only weighed 95 pounds. Due to be being much heavier than her, I would have needed a lot of bone marrow from her. The doctors decided it might be a better option to take from my mother instead and of course she was up to the challenge.
I also participated in a clinic trail there that was comparing the results of haplo (half match donor) transplants and umbilical cord blood. The computer would randomly assign you which transplant you’d receive and I was chosen to have my mother as my donor.
May 16th, I was admitted to KU’s bone marrow transplant unit. I did 5 days of high dose chemo, and finally May 22. My mother underwent her bone marrow harvest. They went into her hips 19 times in order to get enough bone marrow from her. They said she had excellent marrow, and I should recover very quickly. After all the chemo I did and one dose of full body radiation, all my own bone marrow was wiped out and I was ready to take on my mothers bone marrow.
The bone marrow transplant process is actually pretty anticlimactic. It basically just looks like a bag of blood that they infuse into you.
They dosed me up with some benedyrl so I didn’t have an allergic reaction to the marrow and I was good to go.
The next three days, I had three more days of chemo. Just to make sure that my moms cells didn’t outright attack mine. Don’t quote me on this one, but I think they were killing her T-cells.
The funny thing about chemo is when you do so much so quickly. You don’t necessarily get sick right away. I think I might have mentioned that in my last post. About a week later the sickness set in but KU had my on a BA pump most of the time. A BA pump gives you a constant dose of ativan to keep down the nausea. If you’re ever feeling particularly sick, it has a button you can give yourself a little extra dose without relying on the nurses to come in and give you medicine. It was greatly appreciated. Though, I loved all the nurses there, it’s nice that you didn’t need to wait on them to give you medicine for nausea, because usually by the time they get you something to take care of it. You’ve already puked.
One of the nice things I really liked about KU was when you had a bone marrow or stem cell transplant. The nurses actually make a cute little sign to put on your door. This was mine:
These are a few others I took picture of from around the unit:
There are three rules in Unit 41.
- Shower Daily with surgical scrub (just to make sure your port stays infection free)
Those sound pretty simple but when you don’t feel good, it gets pretty difficult. In Saint Louis you didn’t have very many options for food. So I lost a lot of weight there, probably around 25 pounds. KU had room service, which was nice because if I didn’t feel like eating that day I could always order soup. One of the things about chemo is it changes the way things taste for you. I couldn’t eat meat anymore. Meat for some reason was so gross to me, but KU does make a great hot dog, from back when I could actually eat meat.
When you have a non existent immune system, you are on a special diet called a neturopenic diet. This means I couldn’t really eat anything uncooked. No lunch meat, unless it was heated up, no fountain sodas or soft serve ice cream. All meats (including steak) have to be extremely well cooked. I had to stay on this diet until August 31st.
After about 4 weeks, my immune system was well enough that I was able to leave the hospital and move into my apartment in Mission where my mother had prepared for my arrival. I had rented some furniture so we had a nice little set up there. A couch, two beds and a tv with internet.
My mother and I spent a lot of time there together. We hadn’t really gotten along up until this point so I was extremely nervous about what the next few months would be like. By ourselves we got along quite well. It was a great bonding experience for the both of us. Paul visited about every two weeks cause we couldn’t quite afford weekly trips anymore. I missed him plenty but we skyped a lot to make up the difference. Not quite as good as seeing him in person, but it was good enough just to hear his voice for a little while.
During this time, I did have a little bout of Acute Graft vs Host disease. I had to go get a colonoscopy and an endoscopy. They did a biopsy which confirmed that my moms cells were attacking mine in my colon but they put me on some predisnose and that cleared it up almost immediately.
Predisnose is a beast though. Makes you angry or sad, makes you want to eat everything in sight. It also degenerates your muscles and would raise my body temperature up into the 99s every night like clock work. It also gives you an awful moon face and a little hump on your back. I got almost every side effect imaginable but it kept me fairly comfortable and I’m thankful for that.
I had many visitors from NJ while I was at my apartment, I also had quite a few from Joplin as well. I was able to make a few trips home. Especially during July when we were moving into the new house Paul had built for us.
August 31st I was scheduled for my last bone marrow biopsy which showed I was still in remission and the bone marrow from my mother had en-grafted well, I was finally able to go home and enjoy my beautiful new house and go back to a semi normal life with Paul by my side.
I wish I could say that’s where this story ended but unfortunately we aren’t quite done yet.
EDIT: I just wanted to add this little video from the Mayo Clinic that goes over a stem cell transplant to hopefully spread a little more light.