"If you aren't willing to keep looking for light in the darkest places without stopping, even when it seems impossible, you will never succeed."
--from Grey's Anatomy
So getting a bone marrow transplant is a really big deal -- as big a deal as getting a new organ. And in the process of getting it and your body adjusting, you can develop something called Graft-versus-Host-Disease or GVHD. And it can affect literally any of your organs. So they don't just let you do it on a whim. You don't just make an appointment and go for it. All of your organs have to get cleared and specialists have to talk to you about the things that GVHD can do to each organ.
The process is really intense. For the past three weeks, I've basically heard all about the horrible things this COULD do to my body, two or three days a week. It's kind of intimidating and what I have to keep reminding myself is this: This is my shot a real life, at "rejoining the world of the living," as a family friend said. Also, not everyone gets GVHD, or they get a little GVHD and it goes away.
Having a perfect match can also help things. For me, my brother wasn't a match. But there are 35 perfect matches for me on the bone marrow registry. So now, my doctors are going through the process of having all these people called and, if they are still willing to donate, they then get a blood test done to verify that the information on the registry was correct and they are indeed a match. Then they'll go through and find the absolute best match for me. I'm very excited that there are so many possibilities. I was very worried that I wouldn't find a match.
But in the mean time, while my team goes through that process, I've started to feel a little like a car. I've been checked up, tuned up, gotten advice, and gotten clearance from several doctors.
The first person to give me clearance was my liver specialist, Dr. Conjeevaram. He mattered most in this equation because the reason I am having a bone marrow transplant is that my body can't handle the TKI chemotherapy, specifically because of my liver enzymes shooting up when I take the medication. Luckily, I've had a recent liver biopsy and it showed that my liver was in good shape, despite the problems with the TKIs. So Dr. Conjeevaram cleared me before I ever met my transplant doctor.
We met my transplant team on March 25. My whole family went in together with me, which was great. It made me feel very supported. My doctor is Dr. Attaphol Pawarode. His nurse coordinator, Isabel, is who I've dealt with most. She's made all the clearance appointments for me and also let me know about my matches. Dr. Pawarode is comfortable with Dr. Conjeevaram's assessments so my liver was cleared right away. I was VERY nervous that they would say no because of my previous liver problems. Since GVHD can attack the liver, it's important that it's healthy.
Next, I had to be cleared by gastroenterology. I have a history of diverticulitis and Dr. Pawarode and my oncologist/CML specialist, Dr. Talpaz, were interested to know how bad the diverticulosis pockets were. Diverticulitis happens when, in your diverticulum, little pouches form that food gets stuck in and then gets infected. I've had diverticulitis several times now, so the approach was to have a colonoscopy and see if the diverticulosis was bad enough that I would need surgery before the transplant. This made me very nervous because I knew they'd want me to recover for 4-6 weeks before undergoing the transplant and with my cancer on the rise, I didn't know what kind of timeline we'd be working with and if Dr. Talpaz could keep it under control long enough.
I had the colonoscopy on March 27 and luckily, they were not able to find any diverticulosis whatsoever, which meant I also got to take a surgical consult off of my schedule.
Dr. Pawarode is also monitoring my kidneys. They need to be in good health and can also be affected by GVHD. He is watching my creatinine and my EGFRs which both have to do with kidney health.
Last week, my mom and I went in for my social work appointment, which basically is to assess that mentally, I'm up for this process and that I have two caregivers who are aware that I will need A LOT of help for the first 100-180 days. For the first 100 days, I cannot be left alone at any point in time and I have to have someone who can drive me to the hospital if I need it with me. My brother can help take care of me, but he doesn't drive, so he's not someone I can be left alone with.
During this appointment, we also learned that I'll also be getting IV medications still once I leave the hospital. Mostly, I'll be getting liquid magnesium infusions because I'll be taking an anti-rejection drug called Tacrolimus. Tacrolimus leeches your body of magnesium so it has to be replaced. Tacrolimus will also suppress my immune system. And in the meantime, I will also possibly need blood or platelets, so I may have to go out to the hospital or to my local University of Michigan Health Center to get infusions of that. I'll also have weekly appointments at the main hospital in Ann Arbor for at least the first 100 days. Eventually, it'll go to once every two weeks, then once every three weeks, and so on, but there's no estimated time frame on this -- everyone is different. The same goes for the Tacrolimus. Eventually, they'll start to ween me down off of it and then I will eventually be able to be on a pill form of magnesium.
They also made sure during this appointment that I don't have any substance abuse issues that could be a problem during the transplant process. I had considered getting my medical marijuana card to get edibles so I could avoid oxy and morphine in the hospital, but because it isn't regulated well enough, they prefer that I just stick to my marinol pill, which is a synthetic marijuana pill that specifically works for my nausea and appetite. I don't smoke or drink and I don't do any drugs so that part of the appointment was pretty short.
My social worker's name is Jack and he is really nice. I'll see him one more time before my admission to the hospital for transplant. At that time, I have to bring him some paperwork, including my health care directive, which is scary to even have to fill out. I'll also see Isabel and Dr. Pawarode one more time where they will go into deeper detail about the chemo and the transplant and the time I'll spend in the hospital.
That day I also met with my new OBGYN and I was glad my mom was sitting next to me when she informed me that -- and this is your warning that it may be too TMI for you --sometimes, during chemo and BMT, you get sores inside your vagina and sometimes, when they heal, they heal together and your vagina closes in on itself, so you have to use dilators on yourself in the shower to make sure that doesn't happen. I think that's still the most horrifying thing any of the clearance doctors have told me. I mean, there is no man in my life right now. I doubt there will be for the foreseeable future. But I hope there will be one day and I might want to you know, use that organ, so a new cancer friend has recommended a set of dilators to me.
This past week I've had six different clearance appointments.
On Monday, April 8, I saw Dr. Talpaz. Now that we are definitely doing the BMT, his protocol has changed a bit. We will no longer try any of the TKIs because they could cause my liver enzymes to rise again and have to postpone the BMT. This is scary because my BCR-ABL1 count right now is so high that they call it "unquantifiable." Right now, my blasts are at 2%. If they go over 15%, I will be in blast crisis and they will have to move up the transplant date. Transplant patients do infinitely better when they are still in the chronic stage, so that's really where we want to stay. If you're a praying person or a sending good thoughts person, this is what we really need prayers for right now.
On Tuesday, April 9, I saw my symptom management specialist, Dr. Urba, who helped me by increasing the dose of my marinol, especially knowing that I will be fighting nausea during the entire BMT process. She's retiring in three months and my next appointment won't be for four to five months, so I won't see her again before she retires. This is sad for me -- I really like Dr. Urba and she's one of the top doctors in her field.
On Wednesday, April 10, I saw an ophthalmologist. I am pretty horrible about people doing anything that involves my eyes and I have a record of having kicked equipment (unintentionally) before. This appoint was a real eye-opener -- puns intended. In addition to drops to numb my eyes and to dilate my pupils, I had these tiny little slips of paper that they put into my lower eyelid and I had to keep my eyes open while they were in there and let them water to see if I have dry eyes. This was a special kind of hell. The slips of paper had little tabs that go in your eye and that are about half the size of a mechanical pencil eraser. Then hanging from that tab is a longer piece of paper, very thin -- like maybe 1/8 of an inch -- and it's lined to see how much your eyes water. Mine didn't water much. This was a surprise to me because I feel like I have very watery eyes, but apparently, they're just abnormally dry and my body is trying to compensate. I also learned that I will start Restasis while I'm in the hospital starting Day 0 (which is when I will get the BMT) to prevent extreme dryness and to help any potential GVHD of the eyes.
Friday, April 12, was a big day. First thing in the morning I had an echo-cardiogram. The tech obviously couldn't tell me anything but she did say that if she'd seen anything problematic, I would've been staying longer than I did.
Between appointments, my mom and I went to Macaroni Grille, which is one of my favorite restaurants. I have a list of restaurants I must get to before my transplant, along with a list of things I want to do before that, and foods my dad must make, or in one special case, we have to go to get cannolis from my favorite place. I'm trying to not focus on my weight because I know I'm going to lose some in the hospital. Last week we got Olga's, which is a special chain here in Michigan.
After that we went back to the local U of M Health Center where I had a spirometry appointment, which is just a fancy name for breathing tests, which took about an hour, and then I saw a pulmonologist who signed off on my lungs for the BMT. She's the only doctor who hasn't done or said something that horrified me.
As far as clearances go, those are all the ones that I need from U of M.
I've saved the worst for last: The dental clearance. Next week on Tuesday, I go for a standard exam, no cleaning yet and that's by design. If I go in for a cleaning appointment and I need deep cleaning/scaling, which I probably will in at least one quadrant, then they'll have to reschedule me all over. So they're just gonna check me out and then make a plan to take care of my teeth.
Because of the leukemia, dental work can be complicated. I haven't seen a dentist in nearly six years. But I'm a fervent brusher and I floss often. I have a feeling I have a cavity in my upper left quadrant somewhere, because one of the teeth is sensitive to anything sugary. I think I'll need deep cleaning/scaling on my bottom quadrants. Luckily, my dentist has sedation for everything, so I won't be as nervous as I could be. I hate dental appointments more than eye appointments, so this is the part of the whole clearance process that I'm most nervous about.
About two weeks before I'm admitted, I'll have a new bone marrow biopsy. I did find out that I can be sedated for that, so I'm thrilled about that. My first bone marrow biopsy only involved a local. I'll also be sedated when I have my tri-fusion catheter put in, so that's a relief.
Once all this is done, I'm giving myself a few days off before I start cleaning my room, which is the big task. I've let it get completely out of control and I have a TON of laundry to do as well. I'm a LuLaRoe consultant (temporarily on hold) and that's all I wear. I have TONS of it, but I am starting to get low on clothes.
So I've broken down laundry and room cleaning tasks into days so I don't wear out too fast. My body is on full-time cancer mode right now and aside from Hydrea to kill off some of the white cells, the cancer is unchecked, so I am more tired than usual.
Part of me just wants to jump into this ASAP and get it over with. But part of me wants each day I have between now and my admission. I'm very conflicted. Isabel says that the time is going to go faster than I think. I'm sure she's right. I just wish I could fast forward and see how this all turns out.
xo,
Heather
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