"Change: we don't like it, we fear it, but we can't stop it from coming. We either adapt to change or we get left behind. And it hurts to grow. Anybody who tells you it doesn't is lying. ... Sometimes, change is good. Oh, sometimes, change is everything."
-from Grey's Anatomy
Since my last entry, a lot of things have changed and we've gotten a lot more information about what to expect during the BMT process. We also learned more about our donor. This entry is pretty long, so bear with me!
The entry is exhaustive, but I had SO MANY questions when I was pondering this option for myself, so I included everything I had a question about or wondered about. If you're looking for something that really tells you what to expect, I think this can help. Obviously, I'll be able to give more once I am going through it, but I hope this helps someone.
During my final appointment with my doctor and my nurse teach session, dates for my admission and procedures suddenly went up in the air.
I'll be receiving Busulfan and Fludarabine, which I knew, but I didn't know how rough Busulfan can be on the liver. As a result, they want to run a test on my called Busulfan Kinetics, which is performed by blood test and then that sample is sent to a lab in Seattle. The idea is that this test will tell them how they should adjust the third and fourth doses of Busulfan. The lab is drawn on day 1 of chemo, arrives in Seattle on the second. They run the test and then the hospital learns what my dose should be on the third and fourth day.
The problem was that I was set to be admitted on Friday, June 14, and start my chemo on Saturday, June 15, with four days of chemo and two days of rest before transplant on Friday, June 21. But since the chemo started on Saturday, there would be no way for the lab to review the test until Monday, which would mean they wouldn't be able to adjust except for the fourth dose.
So now, on Friday, June 14, I go in for my final pre-transplant labs, see my doctor's nurse practitioner for a final appointment, then go and get my catheter put in. I will be sedated for it, but I'm not sure HOW sedated I'll be. I'm a little intimidated by it, but I was also little intimidated by my bone marrow biopsy and it went so smoothly, so I'm taking that with me into the catheter placement.
After it's placed, I go home. On Saturday, June 15, I go back to the cancer center to have the dressing changed and the line flushed. Then on Sunday, June 16, I finally get admitted! So officially, finally, I get admitted a week from today.
After we got that all worked out, I learned a bit about what my schedule will look like while I'm there. I also was given some truly incredible news.
The bone marrow transplant or stem cell transplant procedure has changed drastically over the years. For the most part, when someone has a BMT, they aren't getting something directly from a bone marrow harvest. Instead, they're going through a process called aphresis, where you have an IV in each arm and blood is taken, then stem cells are sorted out, and the rest of the blood is returned to your body. It's much easier than an actual bone marrow harvest. All it requires are some shots to encourage the body to overproduce stem cells, a few hours in a chair, and very little (if any) recovery time.
For a bone marrow harvest, the donor is given general anesthesia and the process takes place in an operating room. The doctors then use a needle to go in through the hips, usually in more than one site on the back of the hip bone, and harvest actual marrow. The donor has 1.5 liters of bone marrow taken from them. Following the procedure, the donor will need IV fluids, medicine for pain and nausea, and a blood transfusion. The donor recovers at home, but they can't do anything strenuous for at least a week. They may or may not require time off of work. As you can tell, a bone marrow harvest demands a LOT more from the donor than through an aphresis stem cell transplant.
There are good reasons to do a TRUE BMT -- one of them being that there is a lesser chance of GVHD or GVHD to a lessened degree.. It does take a little longer to engraft (attach to the inside of the bones and begin produce new cells). But it can be better for the patient in some cases.
My donor was asked to do a harvest -- and she agreed. This is a 21 year old girl who has never met me and knows nothing about me, other than the fact that this is the only way to save my life and she agreed! This is just mind boggling to me, that someone who doesn't know me would go through all of that to save my life. She's sharing with me her genetic code. I started to cry in the doctor's office when they told me. My mom and dad were both teary. I've cried since. I'm just so grateful to this girl. For now, I can send messages to her through my transplant coordinator and we can't know names or anything like that. But in a year, I'm going to be able to learn more about her and I can't wait to thank her personally.
All that said, here's what my treatment is going to look like:
On my first day (Sunday, June 16), I won't receive any infusions aside from fluid. One thing I was told was that to prevent infection, my catheter will be in use 24/7 pushing fluids. They won't even unhook me from it to shower. I will shower with the line still in and my IV pole hanging out outside the curtain.
On Monday, June 17, I will receive a Busulfan infusion and a Fludarabine infusion. My team has assured me that they are really great at lessening the nausea. I am super worried about that. Like anyone else, I hate throwing up. And I'm afraid of it, it seems silly, I know, but two years ago, I had horrific case of diverticulitis and I threw up like 35 times in one night and I was so empty and hollow and cold and miserable. I couldn't keep anything down. And that's what's in my mind. I need to prevent that if I can, though it may or may not be naive to think I can. So I'm going to take any help they can give me.
I'm going to chew ice and eat popsicles 30 minutes prior to my chemo infusions, during my infusions, and 30 minutes after. I've heard from other survivors that this can help prevent mouth sores (otherwise known as mucositis). My nurse coordinator says she doesn't think this will help for Busulfan and Fludarabine, that it only helps with Melphalan, but I'm going to try it anyway. But they did reassure me that when and if I get the mouth sores, I'll be given pain medication.
On Tuesday, June 18, I will receive the same infusions, and we will also at Tacrolimus, which suppresses the immune system and it will help prevent rejection. It will also hopefully prevent GVHD. Wednesday, June 19 and Thursday, June 20 will look the same at Tuesday. Those doses of Busulfan will look a little different thanks to the Busulfan Kinetics lab.
Also on Thursday, June 20, my donor will be undergoing her bone marrow harvest. Her bone marrow will survive 24-72 hours outside the body. It will be brought to the hospital in time for Friday, June 21 -- TRANSPLANT DAY! This will be my re-birthday.
On Days +1, +3, +6, and +11, I will also receive Methotrexate. This will also hopefully prevent GVHD.
GVHD -- Graft Versus Host Disease -- is kind of a wild card. Not everyone gets it -- I know people who got very little to none. But the hospital kind of prepares you for the thinking that you'll get a least a little somewhere, somehow. But they're also good at treating it and getting a hold on it. I'm clinging to that at the moment because I'm terrified of GVHD.
Between my brother and my mom, I will have someone with me most nights. There will be a couple nights while I'm alone, but later on in my stay. I will also have some friends visit.
I will be expected to shower every day. I know this is going to be hard some days, but it's the best way to clean up after the chemo, which is going to come out of my pores and make me sweat everywhere. There's a horrible rash you can get and I'm determined to beat it. When I shower, I have to use an antibiotic wash the nurses will give me, but then I can also use my regular moisturizing shower gel.
So here's a little bit more about my stay and what I've learned ...
First of all, they say not to pack everything you own, but still pack enough to live in the hospital 3 to 6 weeks. It's kind of hard to find a happy medium, but I'm definitely packing a lot. I can do laundry there -- someone will help me because I won't have the energy. And my mom can bring laundry home so we can switch things out. So I don't need every pair of underwear I own or all 16 pairs of pajamas we got for this. Once I'm finally packed, I'll share my packing list so you guys can see what I decided on.
I am doing a little decorating in my room, something to make it feel a little homier. I have this amazing poster of New York City (where I eventually want to live). It's a panoramic view of NYC from the Top of the Rockefeller building. It's in my office downstairs, but it's taped so much to keep it up that I'll tear it if I bring it down. So we're ordering a new one. We also got purple twinkle lights to put up around the border of it. So every day, I'll be reminded of just one of the many possibilities I'm fighting for.
I'm supposed to bring all my paperwork to the hospital -- the what to expect binder and packet, as well as an updated medication list. I also have to bring my Healthcare Durable Power of Attorney, which I've been dragging my feet on because it feels so morbid and negative and dark and I'm trying so, so, so hard to stay away from that place. I've fought depression most of my teenager years and my adult life. I'm afraid of settling in, what Meredith Grey would call the "dark and twisty" place. But I'm making myself do it tomorrow when I get home from my final visit with my regular oncologist, Dr. Talpaz (he's also a leading doctor in the CML field and was one of the original pioneers in helping create TKIs, especially Gleevec, but also has had his hand in others). When I finish it, I have to take it to the bank and have two witnesses watch me and my mom sign it. It's super intimidating.
I also am going to participate in a trial where I can receive another medication to help prevent GVHD. My nurse coordinator pointed it out to me and the risks to me are pretty low, so I figure it's worth a try. So I have to bring that paperwork with me, too.
I learned that any toiletries I bring have to be brand new. A brand new, soft bristle toothbrush. Brand new toothpaste. Brand new shower gel, lotion, face wash, moisturizer, eye cream, face serum, chapstick. If it goes on my body, it has to be brand spankin' new. The worst part of this rule is that any used cosmetics I can no longer use. I'm not planning to wear cosmetics during this process at all and I don't anticipate wanting to until I get closer to Day +100. But I have a lot of high end cosmetics that I love and replacing them is going to be so expensive. I know it's nothing in comparison to receiving a second lifetime, but it's still disappointing. My mom, on the other hand, is thrilled to be getting so many new cosmetics.
I can bring a nail file, but I can't bring nail clippers -- there's a chance I could clip too low and bleed. I can't shave with a regular razor. I can't have flowers (which I knew, but I'm including so others who are new to this know). I can bring pads for my period (but I'm hoping that I won't have one while I'm in the hospital -- I'm on it right now and I'm hoping that the chemo will scare it away in July), but I can't use tampons. I can't use dental floss.
In addition to all the things I can't bring, I can't do a lot of things. I can't blow my nose too hard. I can't rub my eyes. I can't scratch. I can't strain when I have a bowel movement. I can't have sex (not that being as sick as I am attracts a lot of that anyway). I need to stop biting my lip, because I accidentally draw blood all the damn time. And I can use an electric shower but, once again, can't use standard disposable razors.
My team at the hospital is going to me made up of a LOT of people. In addition to what you'd expect -- BMT doctors, transplant doctors, physician assistants, nurse practitioners, transplant nurses -- there's a lot of people who will be helping me that I didn't anticipate. These include case managers, a physical therapist, an athletic trainer, social workers, chaplains, administrative staff, pharmacists, dietitians, financial counselors, and housekeeping staff.
I also learned that once I've officially had my transplant, I become eligible for a grant through Be the Match that can help with expenses, like transportation. The social worker will help me with that while I'm in the hospital.
All the rooms are private with their own bathroom. The bathroom is only for me -- my guests can't use it. Each room has a small couch that converts to a bed, a lounge chair, my bed, and a small refrigerator. There's a widescreen TV with a movie service, but I can also bring my Fire Stick and my Switch to hook up to it, which I'm excited about. I also have to keep the door to my room closed at all time.
The hospital will get me on a daily routine pretty fast. I'll be weighed daily and get my vitals checked every four hours. I'll have blood drawn at least once, but maybe more times a day. That will come out of my catheter. I'll be given medicines orally when I can tolerate it, but IV when I can't. I'll be expected to shower, as I mentioned, and brush my teeth a minimum of twice a day. Since I had my teeth deep cleaned, I've become a little obsessive about brushing. I plan to brush my teeth after every meal and also after my chemo infusions are done. I don't know that that will help prevent mucositis (I haven't read anywhere that it will), but I'm just going to try it. I'll also get meals, but I can get them at any intervals I need -- I can eat when I'm hungry, but I need to eat frequently to fuel healing and I need to avoid IV nutrition if I can.
The great thing is that food at University of Michigan is actually REALLY good. A lot of it is organic or all natural where they can do it. There's a huge range of food on the menu. There's a 24/7 menu that includes things like macaroni and cheese, soup, cereal, bagels, ice cream, PB&J stuff, and lots of other items. You can get omelets all day. They have a GREAT menu. So I'm sure I'll be able to find something that agrees with me, even if I end up just eating a lot of cereal and mac and cheese. And they don't force meal times, like I said. You can order whenever you want.
My hospital has a family fitness center for families only. There's also a family lounge with puzzles we can all use, which I'm actually excited about. (I love jigsaw puzzles!) There's a meditation room that I plan to use and a nutrition room, which has snacks you don't have to order from the room service menu.
Some of the symptoms I can expect from the chemo are nausea, vomiting diarrhea, fluid retention, venous occlusive disease (which effects the liver), and other complications. But they work hard to prevent these. I will probably also experience fatigue and could get some fevers as well.
Common side effects of the BMT can include cough, nasal congestion, flushing, and changes in blood pressure or heart rate. Afterwards, it can take 10-14 days for engraftment to begin. It could take a little longer since it's a true bone marrow transplant, not an SCT. I can also experience leukopenia (low white blood cells), neutropenia (low neutrophils, which are infection fighting white blood cells), thrombocytopenia (low platelets), and anemia (low blood cells). It's because of the low platelets that I have to do whatever I can to avoid limit bleeding. I'll also possibly experience mouth sores, nutritional issues, electrolyte issues, pneumonia, kidney issues, liver issues (VOD), infections, and neutropenic fevers. These are all things I can experience in the first 14 days or so after transplant while my body is still engrafting. Some of these things can carry over up into the first 100 days.
One important part of the healing process it the recovery of T cells and B cells. T cells recognize what in the body is foreign. The B cells produce antibodies to work against the foreign cells. My immune system will gradually return. Since I'm having an unmatched allogeneic transplant, it can take longer than a year for this process to happen. I will also be at risk for bacterial, viral, and fungal infections. If I develop chronic GVHD, that can also slow the immune system's ability to recover and achieve full function.
In the first year, it's going to be very likely that I will be re-hospitalized more than once. They really stressed that this is normal and part of the roller coaster ride. I have to call the clinic whenever I have a fever over 100.5, a persistent headache, pain when voiding my bladder or having a bowel movement, difficulty keeping fluids down, signs of new bleeding, new cough of shortness of breath, blurred or double vision, new rashes or skin change, and any neurological changes. There is a 24/7 phone line for this. At anytime if I experience these things, they can call my into the clinic and admit me, or have me go to the ER.
One thing that is going to be really hard is that for about a year, my dogs will not be able to sleep in bed with me. This is going to be horrible for me, no lie. My dogs are my world and they will not understand being gated out of my room at night or being told to get off the bed. Because it's summer, they tend to like to sleep on the floor anyway, so I'm going to start with the gate open and see if they just like to sleep on the floor by my bed like usual anyway, but if it becomes a problem, I'll have to gate them out, which will break my heart.
I'll be able to snuggle with them on the couch and hug them. But I can't give them kisses or get kisses for awhile. I might also be too tired to play with them and will have to be careful not to overdo it or get scratched in the process and then bleed. My dogs are what bring me comfort when nothing else does. It's going to be heartbreaking for me and I guarantee I will cry over it. I'm ALREADY crying about it. I will cry when I have to leave them to go get admitted. I'm going to do whatever I have to to stay alive and make this second chance count. But in the meantime, some of the sacrifices are going to break me a little. I already feel myself crumbling.
Whenever I go out, for at least the first 100 days, I'll have to wear a mask. I'll need to avoid crowds and anyone who is even the slightest bit sick. If it's one of my family members, it might mean me having to stay in my room as long as they're sick. I can't go too close to the gardens. I also need to stay inside and keep the windows closed when they are mowing the lawn. I can't swim in a lake, pool, or hot tub. It doesn't say ocean, but I'm guessing that's just because we don't live near one, so I'm guessing I can't swim there either. And I have to avoid any construction areas.
To that end, my parents have already remodeled half of our bathroom and while I'm in the hospital, my dad is going to redo the other half so I won't be breathing in any of the particles or anything like that while it goes on.
Obviously, I'm going to have to be a rigorous hand washer. We got four 1-liter bottles of Purell to keep all over the house. I also got some Bath and Body Works antibacterial gel that smells good to keep on me at all times.
A big surprise on the list is that I won't be able to eat popcorn for awhile, because the skins can slice open your gums. I can't use any NSAIDS (Aspirin, Ibuprofen, Excedrin, Aleve, etc.) because they could affect my platelets AND they could mask a fever that's coming on that we'd need to know about. This will be tricky because I can't take a lot of Tylenol because of my liver. I can have some, I just don't know how we will find what my threshold is. I don't wear contacts, but if I did, I wouldn't be allowed to wear them. When I return home, I will still be on IV Magnesium. I also may need blood products still and will have to go to one my infusion centers if I need something like that. I won't be able to drive for at least the first 100 days. All travel has to be cleared through my doctors.
I'll get my immunizations again at around 12, 14, and 24 months, though some of that will depend on how I'm doing.
For at least the first 100 days or longer, I'll need twice weekly or weekly visits. After that they'll gradually space out the appointments. But again, a lot depends on how I'm doing. I may still need to see them more often, or I may be doing so well that they can space them out. It just depends on how things are going day to day. I'm going to be in a constant state of change for a least a year, maybe longer.
I know this entry is really long. But I wanted to cover everything I had questions about when I was first even thinking about doing this.
I hope it helps someone. I plan to update again after I get my catheter placed on Friday to tell you how that goes and how it feels.
xo,
Heather
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