This situation is difficult to contextualize. Compared to many cancer patients, I am somewhat lucky. I am alive. My cancer hasn’t returned and it’s been almost 2.5 years, which means it is unlikely to recur. On the other hand, compare me to the average 22 year old and it’s tough. Compare me to most of my friends, who just graduated from Stanford and are spread across the world, and it’s pretty much devastating. Weirdly, though. I struggle the most with seeing other BMT patients who have had more successful transplants and have been able to move on with their lives. I didn’t die, but am I really alive? My oncologist and I decided I’m neither.
I won’t even attempt to fully convey the suffering I have experienced throughout December, January, and February. All I can do is give you some snapshots. The emotional aspects are as tough as the physical. It is so hard to watch my friends get jobs, move out, date, go to grad school, etc. when I have lost everything. School, my apartment, any semblance of a social life. So, to the hundreds of people who have reached out to me over the past few months – I am not ignoring you specifically. I am ignoring everyone. I can’t hear about anyone’s life right now and I don’t have anything to talk about because I have nothing in my life besides illness.
Right now my days look like just trying to get through. I try to sleep 12+ hours and usually have medical appointments every day between physical therapy, photopheresis, BMT clinic, pulmonology. dermatology, and ophthalmology. My kidneys have behaved since December, and I am still doing photo + IL2 + prednisone. I am actually improving a lot, though my scleroderma is still extremely severe and impacting over 80% of my body. Because I am improving, I have been able to taper the steroids. In December I was on 50 mg every day. Currently, I am on 50 mg every other day alternating with 10 mg, so almost halfway off. I should be down to 50/0 in about two weeks and then my doctors want to stay at 50 mg every other day for a few months. I’m not so sure about that because I hate prednisone, but I also know that every time I have fought my doctors on it they have been right, so we’ll see.
The prednisone is almost as bad as the disease itself. I’m so sick of being hideously ugly and please do not tell me it’s not true, especially if you haven’t been through a physical appearance change that you have no control over. Because of the scleroderma and prednisone, both of which cause me to retain fluid, I am 30 pounds over my normal weight and I feel it everywhere. I can’t wear anything besides sweatpants and I feel like Regina George after she ate all those weight gain bars thinking they would help her lose weight and then she couldn’t fit into anything but sweatpants and her friends were all “you can’t wear that” and she’s like “it’s the only thing that fits.” I’m so, so miserable.
Physically, I’ll just make a list because it’s so much. It’s not even really that specifically interesting other than to convey the general volume of issues.
- Scleroderma, obviously. The itch is incredibly torturous. I cannot do anything, even hold a conversation, without it bothering me. My range of motion is so affected that I cannot do the majority of normal daily tasks like dressing or myself or going on a walk. Here’s a picture of my legs, which are actually the least affected area of my body.
- Wounds – I have random wounds around my whole body, which I guess is common with scleroderma. I counted them yesterday for the first time lol and I have 17ish. I’m putting two different medications on them twice a day and they are improving but wow they are painful and itchy and annoying. I also have a staph infection in one of them on my leg which is really awesome. A couple examples:
- Central Lines – of course there are going to be central line issues in here. The dialysis catheter from Stanford came out of place. I underwent surgery to try to fix it and it was unsuccessful. A week later it was removed and a second line was placed, again in the right side of my chest. This line also came out of place, so the next week I had a third line placed, this time on my left side. Each of these surgeries left gaping wounds that have still not healed 6+ weeks later. As we all know, I have had a lot of line placements (no idea how many at this point, maybe 20?) but I have never had such a hard time healing before.
Left is a week post-op, right is 8 weeks post-op (taken today). It’s pretty much the same on the other side of my chest, too.
- Hair – still an issue. I went to yet another dermatologist at Stanford. She did not see live follicles and felt that the alopecia is likely scarring/permanent. We decided to go ahead and try some steroid injections to see if they help, even though it’s unlikely. I’m too exhausted about this issue to really fully explain it, but suffice to say I’m not that happy about getting 10 shots in my head every 4 weeks and I’m even unhappier that this is probably permanent (even though I have been saying that for literally YEARS and no one would listen to me so I do somewhat appreciate the validation).
- Heart/Lungs: My lungs continue to struggle due to the restriction of the scleroderma and I am still very short of breath. It is a little better as the scleroderma improves but still rough. My heart also showed a small issue with declined ejection fraction in December, which made sense given that I was in renal/respiratory failure, but I’ll be doing some repeat testing soon to make sure that has resolved.
- Vision: My eyes still suck. The left eye is still way worse. I just ordered a scleral lens for my left eye. which is basically a huge contact lens that holds saline in the eye to keep it moist. It is supposed to help a lot. It’s not covered by insurance (just like the stupid autologous serum tears I use), so I just went with the left eye since it is worse and each lens is $260. Apparently this is a thing that people do (have one scleral lens) but if it’s good I’ll probably try to get a second for my right eye. I also found out I am farsighted at this same appointment. I thought old people get farsighted but whatever, I’m happy to be able to read so much better with glasses.
- Mouth: I still have mouth gvhd. Still can’t eat anything spicy or acidic. Still appear to be a weird four year old whenever eating. Doing steroid mouth rinses daily.
- Hemoglobin: My hemoglobin keeps dropping and we don’t know why. Before December I hovered around 12/13, but since then I have been steadily dropping and all tests have come back negative. Today I was 8.3. Adults are typically transfused at 8, and kids are transfused at 7 or symptomatic. I am getting pretty dizzy when standing so I might get a transfusion soon. I haven’t had a red cell transfusion since 2015, when I had my transplant. I am not that worried about possibly needing a transfusion, but I am somewhat worried about the underlying cause.
If you didn’t read all of that I don’t blame you one bit. I actually didn’t read all of it after I wrote it. Who cares about the specifics? The point is that everything sucks, everything hurts/is irritated/itchy, and I’m mad about it. Also, sorry to everyone I haven’t been in touch with. If you saw a day in my life you would understand.