HGB: 13.3
Platelets: 142
WBC: 2.30
ANC: 1.19
Well, looks like I made it.
It's officially been one year since my transplant, and I didn't die, so statistically, I'm doing great. Medically, I'm doing ok. Realistically, and functionally, however, life is miserable. In one year, I have successfully exchanged one chronic disease for another, more debilitating one. I went from being a highly functional human being, to a person that can't even take a shower without having to rest afterwards. I went from taking one daily medication, to taking over eleven, every day, for the past 365 days.
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Visual representation of life 1 year post transplant
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My joints have gotten more stiff and more painful. I tried all iterations of dosages of Jakafi, and when the max dose was not effective, my doctors elected to switch me to Imbruvica. They are confident that this will help with the cGVHD. I have lost confidence that anything will help, but am still swallowing the pill everyday, you know, just in case.
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The new great white hope.
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Everyday I experience some level of pain, and here one year post transplant, I am still traveling to UCLA every two weeks. I am still on prednisone - although I am adamantly tapering off, since I don't feel like it is effective in managing my cGVHD either - and it makes me absolutely miserable in uncountable ways. My NP has suggested transitioning to hydrocortisol once I am able to taper down to 5mg of prednisone, but the truth is, I just want off. I don't want to prolong the process any longer than I have to. I'm tapering about 1mg every two weeks, and it feels sooooo sloooow. Of course, everytime I take it down a notch, it hits me like a freight train, and I spend at least one entire day sleeping, and every other day for a week sleeping on the bedroom floor in the sun with the cats for two hours every morning. So I guess there is that to consider.
I saw the ENT at my last appointment at UCLA. He took inventory of my symptoms and looked up my nose, and decided that I have a lot of capillaries that he could cauterize on one side to try to alleviate my symptoms. And I said, "Why in the world would i do that? That sounds awful." And he agreed, and told me that I could try using some saline spray, and collected my $50 copay, and sent me on my way. Between doctors visits, lab tests, and medications, I am spending roughly $750 per month on medical costs, with literally no end in sight. I asked if there were any medications that I could start to get off of, and my np told me that I need all of the "antis" while I'm still on immune suppression, but that I could stop taking the pantoprazole. Since the tacrolimus or prednisone gives me heartburn, that's the only one that's doing an actual job that i appreciate right now (it's a reflux medication) so I won't be giving that one up. I'd love to be off the atovaqone/mephron. I've been drinking that shit now for an entire year. Imagine the worst tasting liquid medication that you had to take as a child, and now imagine being require to take it everyday for an entire year. Now imagine that the privilege of taking this horrible medication has cost you $480 this year. Awesome, right? ("But did you die?" No I didn't die, so I guess there is that.)
Aside from that, I weigh +/- 5 what I weighed a year ago, which is +30 overweight, despite a low calorie diet, and daily exercise. I avoid the sun like the plague. I have ridiculous temperature regulation issues. 74 degrees seems to be my tipping point. I am either strip-my-clothes-off hot, or two-blankets-and-a-sweatshirt cold at 74 degrees Fahrenheit. Freaking ridiculous. I'm a damn mountain girl. Our heater thermostat is set at 61 degrees, and that should be fine. But not for transplant girl. Transplant girl is either wearing wool socks in August, or sitting outside in a tank top during a snow storm. Transplant girl is having hot flashes and her period simultaneously. Transplant girl is still wearing her oatmeal colored (discolored) cancer hat daily, even though Keith told me that I have to give it up because it makes me look like I'm homeless, because although my hair is growing in, I look like a cross between painter Bob Ross, Richard Simmons, and Ronald McDonald, but with a fatter face, a dowagers hump, and a decided lack of muscle tone throughout my entire body. I've gotten the worst possible hair imaginable, besides no hair. For those of you curious about hair growth post transplant, here is the progress, so far.
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| 9/20/2018 |
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| 10/10/18 |
Well I made it a year, and as my reward, next on my agenda is beginning to get re-immunized. On Monday, I'll be getting vaccinations for Haemphilus Influenza Type B, and Pneumoccocal Conjugate. I'm sure that those are going to make me feel just great. There are like 18 total vaccines that they give (not live vaccines) and they can only give me two at a time, so I'm looking at months worth of vaccination appointments in my future. Allo SCT, the gift that just keeps on giving. ("Yeah, but did you die, though?" No, I didn't die, so I guess there is that.)
Despite all of my "challenges", there are still a few things that bring me joy. Like feeding treats to all of the neighborhood dogs along my morning walk route. Like carpet naps in the sun with these guys:
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| Beeky |
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| Miss |
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| Paco |
And hikes with this guy:
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| Keith |
Besides that I hate going out in public. I feel miserable, I look terrible, and everyday I live in dread of the countdown to my next doctors appointment.
("Yeah, but did you die, though?" No. I didn't die. So, I guess there is that.)
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