Day +292 Life's Joys aka Nasal Swabs and Phlebotomy

HGB: 13.7
Platelets: 232
WBC: 4.30
ANC: 2.39

There just doesn't seem to me to be any rhyme or reason to it.  My joints had been feeling relatively well - some swelling, stiffness, and pain, but minor, and inconsistent.  Then out of nowhere, last week, literally every day my hands, my ankles and my feet were so, so painful.  The outside bottom of my left foot actually felt like it was on fire for hours at a time.  I told my doctor that I just don't understand why, and she said that it's my immune response to something.  Anything at all could trigger it.  I told here that it's been hot, and that I've been getting a lot of sun, despite my best efforts not to (I try to stay out of the sun during peak hours, wear long sleeves, and always wear sunscreen) and she said that for all we know, that could be triggering my joint issues.  Seasonal allergies could trigger the GVHD, if I pick up a cold, that could trigger it.  There's really no way to pin it down, unfortunately.  So, we have elected to go up on my Jakafi.  I should be starting 15mg twice daily this week.  I am still on 10mg prednisone daily, and my doctor was unwilling to lower my dosage while I'm having joint flares.  When we do begin to taper again (hopefully at my next appointment, if all goes well with the higher dosage of Jakafi) we will be going very slowly, and they will only taper me down by 1mg at a time, as I seem to be really adversely effected by the side effects of prednisone withdrawal, even though it seems like I'm taking it so slow.  Every time we lower my dose of prednisone, the fatigue is almost unmanageable.  Like stop what I'm doing and lay down on the floor to sleep for a couple of hours unmanageable.  The ultimate goal is to get me off prednisone completely, but it's going to take quite some time. 

I've added another pill to my daily regimen in the past month, as my blood pressure has been steadily climbing, and even at home in non-stressful situations I've been running 146/96.  I really honestly used to have good blood pressure, and the doctor told me that she feels like this elevation is most likely caused by the other medications that I am on.  So I'm hoping this is just a temporary addition, and that I can wean off this as well, but to be honest, it's not looking good, as I think I'm actually taking more medications than I was when I was initially released from the hospital post transplant.

More joy in my life, I've been noticing a lot of blood when I blow or clean my nose.  (Gross, I know.)  I haven't really been having active bloody noses, but when the NP checked it out she said that my nasal passages looked so raw and inflamed that she was reluctant to even swab the right side, for fear of hurting me.  Convinced that I had picked up some sort of virus, she prescribed my a Z-pac.  By the time the results came back (negative - no infection) I had already finished 3 days of the meds, so I went ahead and finished them up anyway.  She suggested that I try a saline nose spray, but I am apparently a child, because as soon as I shoot something up my nose I start choking and sputtering like I'm drowning, and by the time I'm done hacking and blowing my nose, I've kind of defeated the purpose of trying to moisten it.  They've put in an order for a CT scan, to see if there is anything sinister going on up there.  I don't think that there is, but how would I know?  Its a huge pain in the rear, but I tell my doctors about anything weird that's going on, stuff that I usually would have shrugged off and lived with in my past life, because that's how people die.  I don't have the luxury of ignoring shit, and pretending like everything is fine, because I know that with the medications that I'm on, my immune system is suppressed, so I could be ill and not even know it.  So now I'm one of those hypochondriacs that carries tissues in my bra and checks the colors of my boogers.  I'm a joy to be around. 

After my first phlebotomy, my ferritin level went down to 1509.  My doctors want it below 1000, so I had another phlebotomy treatment last month.  This one was worse than the first, as the blood just would not come out.  My nurse kept adjusting my needle and then closing the curtain and walking away, and I was making literally no progress, and was completely immobilized by the needle in my arm attached to the bag of blood sitting on the scale on the floor.  Finally, after I'd been there an hour and a half, she agreed to manually pull the blood out with a syringe, as long as I agreed to drink a cranberry juice.  It made me nauseous and sweaty, and a little faint, but I was just glad to have it over with.  Every time Keith and I go to UCLA, the ultimate goal is to come home.  Phlebotomy days (once a month) are literally 12 hour days with travel time.  I pack our lunch so that we don't have to make unnecessary stops, but even so, with travel and appointments, and traffic and treatments, we leave at 6am, and don't get home until after 6pm.  So much of life these days is about being a patient.  Still.

I remember my grandfather telling me that he had become a professional patient, and I feel like that it what I've become too.  We are still traveling to UCLA every two weeks for appointments, and my medication and appointment management take up several hours a week.  I didn't think that it would come so early.  I thought that I'd have a few years yet.  I turned 39 in May.

My hair continues to grow.  It doesn't look good, but it is growing some.  It is weird straight in the front, and perm curly in the back.  At 39 my hair looks like one of the Golden Girls.  I suppose I should be thankful that it's Blanche instead of Sophia? 

Thank you for being a friend.

I have been so hot lately.  I know that I'm in the minority, but I hate the summer time.  Where I live, most people don't have air conditioning in their houses, as there's really just no need for it.  The hottest we get is low 80's, and that only happens a few days a year, so on those days we just turn on the fan and deal with it.  While most of Southern California suffers from May Gray and June Gloom (the marine layer, that usually keeps things cloudy and overcast with cooler temperatures) we, at a higher elevation are above it, so we get bright relentless sun while others in our region sometimes get a bit of a break and a cool off.  (That's one of the reasons that we have a solar observatory here.)  No public pools for me, as I'm still immune-compromised, so it's just a lot of lukewarm showers, and crying about being hot for a couple of months.  First day of July, and I'm already waiting for Fall.