Not So Fast...

Once again, whenever I make plans, everything seems to go to hell in a handbasket.  Two days after my transplantaversary, I broke out in a skin rash.  At that time, I had just gone down to 7mg on my prednisone, stopped taking Jakafi, and started taking Imbruvica, so I didn't know if I was having an allergic reaction to the Imbruvica, or if I was developing skin GVHD.  It started with my scalp itching, which I didn't initially pay any attention to, as I keep my hair squished under a hat 90% of the time, and thought that it was just hat itch, but then, my neck, arms and chest started to look blotchy and got very itchy - and weird - my lower face felt so so dry.  Like I kept going in and putting moisturizer on my chin and around my mouth, because it just felt so dry.  And then I got patchy spots between my knees.  Ug.  I immediately started taking benedryl and put hydrocortisone cream on it, and that helped with the itch, but it didn't go away.  This rash wasn't like the rash that I got when I started taking Bosutinib, back in the day, it was much more subtle and faint, but it itched like crazy.

Faint Rash

I was scheduled to see my dr the next day, so I just kept up with the benedryl and hydrocortisone until my appointment.  When she saw it, she was of the opinion that it was GVHD, as she felt that a drug rash would be much more raised and welt-y looking.  So back up to 20mg of steriods for me.  (Which literally made me cry, because I've been working so hard to get off prednisone, and going back up to 20mg pretty much undid 3 months worth of tapering in one fell swoop.)  I continued taking the Imbruvica, and with the increased dosage of prednisone, the itch went away, although my arms are still a bit blotchy.  Sigh.  Which means that it probably was skin GVHD.  Sigh.  Which means that it's going to be hard to get off steroids without a flare.  Sigh.  The dr. also nixed vaccinations, as she didn't feel like I should have any while I was having an immune flare.  So I'm still unvaccinated.  Now, a month later, I've been able to taper back down on my prednisone to 12.5mg without any GVHD flares, and I've decided to stop taking the Imbruvica, as I don't feel like I'm getting any benefit from it.  My joint pain is the same/worse as it has been, and I'm having some bleeding issues, despite the fact that my platelet count is fine.  (Petechiae rash on my arms, bruising all over my legs, several bloody noses, and more!)  The dr would like for me to try Rituxan next but right now, I say no.  I'm tired.  I need a break. 

I don't get a break, but I need one.  Since last month, I am on a bunch of new meds.  I've been prescribed Gabapentin as my fingers have been getting stiffer and the joints actually "get stuck" or locked into position sometimes.  I've also been prescribed an additional blood pressure medication, as it seems like one is just not enough to control it at this time.  Electrolytes have been coming back consistently low, so I've added more magnesium, and started taking potassium.  I've been getting lots of leg and foot cramps, so I suspect that even with the additional supplements, my levels are probably still lower than they need to be.  Also, the dr has encouraged me to try Ritalin to help with my fatigue.  (Haven't started that one yet, maybe next week.)  My tremors and shaking has gotten much worse for some reason, and at last count my tacrolimus level was high (11.9), despite the fact that I am on a very low dosage (.5mg daily) so I do get to start taking tacro every other day instead of every day.  My breakfast is seriously more pills than food.

Aside from all the medical nonsense, which is basically my whole life, time marches on.  The fall is absolutely lovely up here this year, I'm glad I'm here to see it.  In more ways than one.

Day +365 Friday the 13th

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. 

Visual representation of life 1 year post transplant

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.

The new great white hope.

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.

9/20/2018

  

10/10/18

11/11/18

12/11/18

01/15/19

02/06/19

03/31/19

04/23/19

05/09/19

06/15/19

07/07/19

08/14/19

09/13/19

09/13/19 from the back

Lovely, right?

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:

Beeky

Miss

Paco

And hikes with this guy:

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.)