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.)

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.

Day +232 Transitions

Hgb: 14.7
Plt: 185
Wbc: 6.43
Anc: 4.15

I was seriously terrified to go to UCLA this week with all of the measles quarantines there on the campus.  Even though the infected person supposedly only exposed those on campus, and not at the hospital on April 9th, I was at the clinic on April 10th and kinda freaking out about it.

For those of you that don't know, a transplant wipes out your previous inoculations, and it's like you're a new born baby, and aren't able to start your immunizations for a year or so.  So I have no protections against measles, mumps, chicken pox, or any of the other things that children get immunized against, and at this point, while I'm still on immune suppressants, especially, I'm not able to get any of those yet.  Keith and I are still very careful about hand sanitizing and staying away from sick people, but I can't really help who I am exposed to when I go to clinic. I am very grateful that I didn't go anywhere else in LA (like to get food or coffee or anything) while I was down there on the 10th, as the campus is literally across the street from the hospital and many of the students are out walking around and patronize the same businesses as the hospital patients and staff. I believe that the period when the infection would have shown up by passed on April 30th, so I'm in the clear on that one, thank goodness.

Still experiencing random joint pains, despite my increased dosage of Jakafi. I have been able to reduce my steroids (prednisone) to 12.5 daily, but am still having some joint flares, so the doctors want to leave me on this dosage for awhile, especially since I have been experiencing horrible fatigue. The kind of fatigue where I sleep for 2+ hours in the middle of the day. The kind of fatigue where I can hardly keep my eyes open around 9am and have to go back to sleep, even though I've only been up for a few hours. The doctors are hoping this will regulate itself and that I'll be able to reduce my Prednisone incrementally at my next appointment.  I hope so too.  Right now the fatigue is almost debilitating. Some days I'm able to get a bit accomplished, and then the next day I feel like a zombie and can't keep my eyes open for more than a couple hours at a time.

My nurse practitioner encouraged me to try physical therapy to help with my joint pain. I went twice. The physical therapist pretty much told me that they could give me some exercises to do, but that if the areas of pain weren't consistent (sometimes my hands hurt, sometimes my ankles and toes, sometimes neither and sometimes both) there wasn't much else they could do besides some targeted massage.)  Last time they dipped my hands in warm wax, and then massaged my hands, which felt nice, but with my copay, it was quite a bit more expensive than a manicure, so at this point physical therapy isn't beneficial enough for me to justify the cost.

I also learned in April that my ferritin level is too high. I thought that was strange since I didn't require any red blood transfusions after my transplant, like many people do, and only had one platelet transfusion, but apparently my iron level is elevated from all of the blood transfusions that I had back in 2015/2016 when my counts had a hard time recovering while I was taking Sprycel. Apparently, your body does not have a mechanism for getting rid of excessive iron, so my ferritin level was above 1800. (I believe normal for a woman is below 200.) So how do they fix this? A good old fashioned blood letting. No joke. In 2015 they put a bunch in, and now they need to let a bunch out.

I had my first "phlebotomy" on Monday. When the nurse came over with what looked like a produce scale from the grocery store, I was pretty sceptical, but apparently, that's how it's done. They started an Iv line, and then let me bleed out a pint or so (500ml). Seriously.

High tech.

They have this fancy high tech machine to find a vein in your arm, but then they measure the amount of blood removed with a mechanical scale? It's wild. I suppose I should be happy they don't use leaches. They expect each phlebotomy session to lower my ferritin (iron) by 100-200, so I'll most likely need another 3-4 more sessions, as they'd like to get my ferritin below 1000. I'll be going in for blood letting once a month, until they can get my level where they want it to be.

Besides that I've been having terrible hot flashes. I crawl out of bed at night to lay on the floor, I'm so damn hot.  The doctors believe that this is most likely caused by chemotherapy induced premature menopause. Besides the hot flashes, though, I find that I am extremely heat intolerant. It's been unseasonably warm here, which for us means 70 degrees during the day, and I cannot deal. I can't be outside at all if it's over 65 degrees or I feel like I'm cooking.  Not sure how I am going to cope this summer when it really gets hot.

Aside from all of the medical stuff, the electric company tried to burn our house down back in March, when their equipment failed, and the neutral connection at the transformer at the power pole came loose and sent a power surge through our house, cooking all of our 110v appliances, including our heater (while the nights were still sub-thirty degrees), and made our dimmer switches smoke in the walls. Thank God Keith is familiar with electrical systems, and was able to minimize the damage as much as possible by turning off the power to the house at the panel and at our pedestal, and was able to replace the burned up switches, after the electric company came out and reconnected us.

Thank goodness we were home at the time, or the damage could have been much more substantial.  We, however, had to get all of our appliances fixed, and had to replace the fridge, as it was a total loss (it smelled like burning electrical wires when you opened the door) and we are still waiting for the electric company's insurance to reimburse us. And I'm like "good god, really, what else?" and then our new TV lost a pixel all the way from the top of the screen in a line through to the bottom, so now I just keep my mouth shut and try not to tempt fate.

I've been hiking as much as my ankles will allow, and the wild flowers are beautiful this year after all of the rain and snow we've gotten.

Super Bloom. (* Photo by Keith)

I've only been able to sustain a weight loss of 7 lbs since the beginning of year, which is disappointing since I feel like my efforts are not reflected in my results. (I deny myself things on a daily basis, and yet...)

My hair is also new and strange every week. I had to buy my first bottle of shampoo this month, since August, so I'm definitely getting some growth. This week that growth has turned a bit curly, still long at the crown and sparse on the sides, with a greyish spot right up front. Keith calls it my "undercoat". I'm hopeful that next week's style is a little more attractive, as I'm still wearing my wig and a beanie when I go out, and what with the warmer weather, and my own temperature regulation issues, it's soon going to be legitimately too hot for that.  The self image stuff is hard to handle.  When I look in the mirror, the person that looks back at me is nearly unrecognizable.  Its hard to handle. 

April 2019

March 2018

My doctor returns from maternity leave this month, so we shall see if she wants to change anything regarding my current treatment, but the NPs and PAs really do a fine job, so I doubt it.

My birthday is this month, and there are still so many things that I am restricted from doing, so I'm just going to consider this a year of transition, and hope that next year is better.  My birthday wish this year is for moderate temperatures, less over-all puffiness, and rapid hair growth.  A girl can dream, right?

Day +202 One Step Forward, Two Steps Back

Blood Counts:
HBG: 14.8
PLT: 145
WBC: 5.63
ANC: 3.73

After much to-do with the insurance company and pharmacy, I finally started Jakafi.  And it seems to be helping.  I started on a dose of 5mg in the morning and 5mg at night, and my fingers feel somewhat better.  The doctors have decided to increase the dose to 10mg AM and 10mg PM to see if it can make me feel MUCH better.  It took literally four phone calls back and forth to the pharmacy, conferencing in my insurance company, and back to the doctor to actually get that prescription filled, and I went without the Jakafi for four days in the mean time.  And my left ankle started hurting so badly, that it felt like I was injured.  I've been back on the higher dose for four days now, and my ankle still feels like it's sprained.  The joint is sore to the touch, and sensitive to movement, but I *think* it is starting to get better, because a few days ago, I could barely walk on it without wincing in pain.  My fingers have been a little stiff too, so I'm hoping it's just a matter of the drug making its way back in my system, and hoping that my joint issues are not progressing.

I'm still on prednisone, and I hate it.  My dosage was reduced from 20mg to 15mg at my appointment last week, but I still am feeling prednisone side effects pretty hard.  It makes me literally feel like I'm starving.  In the middle of the night.  I wake up out of a dead sleep, pantry eat something - usually a handful of trail mix, or chocolate chips, or a spoon of peanut butter, pound an entire diet coke in about 3 minutes - and then go back to bed.  It's absolutely ridiculous, and super counter-productive to my whole trying to lose weight mission.  I've started putting a banana or an apple on the shelf in the pantry, and pre-tracking my midnight snack into my daily calories, but the hunger will not be assuaged by fruit. 

The sleep is still fucked up too.  Maybe improving a little bit, since I rarely lay awake for hours, but I do usually wake up at 4-something AM, and lay there til what I deem is a decent hour to get up, which in my world is 5 AM.  I'm only sleeping about 6ish hours a night, and I feel tired all of the time.

And my face.  Oh, my poor puffy face.  I'm growing some very floofy, odd colored hair, but even that exciting milestone is eclipsed by the size of my round face. 

What's your name, little boy?

Fat Face Mcgee'n it

I don't know what I'd envisioned regarding my hair regrowth, but I promise you, this isn't it.  

Sometimes I feel like I'm not making much progress, because I'm still taking most of the medications that I was taking when I was released from the hospital (minus the IVIG infusions).  Some of the dosages have been reduced, but at almost seven months post transplant I am still on:

Noxafil

Atovaquone

Acyclovir

Pantoprazole

Magnesium Protein

Tacrolimus

Prednisone

Vitamin D

Jakafi

I also am still traveling to UCLA to see the doctor every two weeks, as my blood counts still require close monitoring (especially on Jakafi, as it can cause lowered blood counts) and my symptoms are being evaluated, and my medications are constantly being adjusted.  The doctors tell me that I am doing incredibly well, which makes me feel very sorry for the other transplant patients that they see that aren't, because I don't feel incredibly well. I can only imagine how they must feel.

 

Day +167 Progressive

Blood Counts:
HBG:15.5
PLT: 260
WBC: 7.46
ANC: 4.26

Hemoglobin was a little bit high during my last round of tests.  They said that it could be from dehydration, but that it bears watching, and that they will keep an eye on it.

Being on steroids is so hard.  On the one hand, I believe that they do have a positive impact on my joint issues.  They don't eliminate the pain, but I feel like they might help alleviate the inflammation a tiny bit.  (I was also prescribed a topical ibuprofen gel...it does absolutely nothing.)  I was put back on 40mg of prednisone daily at my last appointment, and have tapered down to 25mg.  Don't get me wrong, my fingers are still stiff and sore, and the joints in my toes, feet, and ankles can't tolerate much activity without pain, but I feel like the steroids are keeping it from getting much worse, as I haven't had very much progression into my other joints, like elbows shoulders or knees yet.  So far the pain and stiffness is keeping to the periphery, so that's better than nothing. 

Downsides are that, once again, I can't sleep at night.  I spend hours lying awake, alternately staring at the wall, or the inside of my eyelids, just hoping that I can get more than 4 hours or so.  My face is starting to fill out and look a little jowly and round again (which I hate), and I've gained back one of the lbs that I had worked so hard to lose.  Just trying to remember that they are hopefully just temporary, as my Drs have decided to try to see if Jafiki (ruxolitinib) can help with my joint issues.  I should be starting it in the next couple of days, and I'm hoping that it helps with my chronic GVHD.  If it does, then we can discuss tapering off the prednisone again. 

And by the way, how bummed am I to have developed chronic GVHD when I had literally no signs of acute GVHD in my first hundred days post transplant?  I thought I was home free.  While I'm thankful that the manifestations of GVHD have not been severe, I'm also concerned about progression, as my symptoms literally came out of nowhere, and are not completely alleviated by steroids.

Adding to my medical anxieties, I learned at my last appointment that the nurse practitioner that I have been seeing since I was released from the hospital is leaving UCLA.  On top of that, my doctor just went on maternity leave, and won't be back until May.  So I'm feeling a little bit abandoned.  I have no doubt that my new NP, and my interim Dr will be more than capable, it's just a bit difficult having to form new relationships, and explain all the nuances of my medical history to new people.

Day +151 Expectations

My blood counts continue to look good, but the joints in my hands and feet continue to ache.  I have been back on 10mg of prednisone (steroids) for almost three weeks now.  They do seem to help some, but they don't eliminate the pain and stiffness.  They've done blood tests checking for arthritis and inflammation, as well as some for graft vs. host disease, but nothing has come back red flagged...meaning nothing is off the charts high.  So they don't really know why.  All I know is that door handles are difficult, I struggle to open jars and bottles, and tasks like typing...remaking the bed...grasping anything heavy or awkwardly shaped are all very painful, and difficult.  My dr. mentioned perhaps switching me off steroids and onto a medication called Jakafi, as it has been known to help with GVHD, but if my blood tests don't support that diagnosis, I'm not sure if I'll be able to get insurance approval. 

So I'm not sure what the game plan is at this point.  The steroids make me hungry, occasionally sleepless, and give me a dull headache (not to mention long term steroid use has major negative impacts on bone health and can cause bone degeneration and osteoporosis.)  I've tried Ibuprofen, as well as a very expensive ibuprofen gel, at the urging of one of my doctors to help with the joint pain.  Neither have helped.  All I know is that my joints ache like they never have before in my life - and it's not the weather (or my age...I would hope, at 38).

In recent testing, my vitamin D level also came back very low.  They are having me take 50000 IU of vitamin D weekly for 12 weeks to try to bring it up to an acceptable level.  The doctor said that low vitamin D could play a role in my fatigue, and that it may get better as my level increases.  I've taken 3 doses so far, and I'm not running any marathons, so we'll see if it gets any better.  I had an appointment scheduled with an endocrinologist to check that my adrenal glands are functioning correctly, but had to cancel when I went back on prednisone, as the testing cannot be done accurately while on steroids.

Good news is that my BCR-ABL test came back (this is the test that I've been having ever since i was diagnosed that tests the "cancer level" for CML).  Before I went to transplant, my number had inched back up over 5%.  My recent BCR-ABL was negative.  Meaning no cancer.  No leukemia.  For the first time in almost 5 years, I can say that I don't have cancer.  At all.  Most CML patients in this day and age never get to say that, so in that respect I feel very fortunate.

As much as I hate to say it, I have to admit that I feel like a horrible and ungrateful person most of the time, because to be honest, I felt physically better before my transplant.  I felt physically better with low levels of cancer, than I do now almost 5 months post transplant.  There it is.  No caveat to add to that, no "well at least..."  I'm happy that I don't have cancer any more, but I'm sad about the things that treatment has cost me. 

I've been trying to lose some of the weight that I seem to have acquired.  (No one ever tells you that's going to happen.  They tell you about the chemo nausea and weight loss, but they never tell you about the medication weight gain.)  It's coming off twice as slowly as it went on.  I purposely gained 15 lbs before I went into the hospital, thinking that it would help me once chemo killed my appetite.  That never really happened for me, and with three months on high dose steroids, I gained another 15 lbs.  In the past 6 weeks, I've managed to ditch 7.5 lbs, but it's been a struggle, especially since I'm on steroids again, and they make my stomach think my throat's been cut (aka I'm always hungry), and exercising a lot has been difficult since my ankles and toes start killing me after about half an hour on my feet.  Struggling, but trying hard.

Hair is also coming in a bit more.  Every week I can see a little less scalp, so that is a good thing.  Very soft, and kind of dappled in color.  I've heard that it often comes in curly - like Richard Simmons curly - after chemo treatment.  So far, laying pretty flat in most spots, so I hope to dodge that bullet.

Almost real hair

Still traveling to UCLA every two weeks.  Sometimes (especially when the weather or traffic is horrible) it feels like a waste of time, since my doctors don't really know what to do about my recent joint issues, and according to them, compared to other transplant patients, I am doing "so, so well".  I don't want to be compared to other patients, though.  I want to be better than *I* was before.  Maybe I have unrealistic expectations.

Day +124 Aches and Pains

Someone asked me a couple of weeks ago if I'm bored.  I'm not.  I'm not even close to bored.  I feel so exhausted all of the time, that making it through my daily tasks right now feels like an accomplishment.  Just showering and changing my clothes, or changing the bed sheets and doing a load of laundry, make me tired enough to need a nap.  I've mentioned my fatigue to my doctors and they think that I should be feeling better/more energetic by now.  If things don't improve in the next couple of weeks, they may want to send me to an endocrinologist to make sure that my adrenal glands are functioning correctly.

My blood counts had actually improved from their downward trend in December, and all of the biggies were back within normal range when I saw the Dr. on Jan. 2nd:

Blood counts:
HGB: 13.7
PLT: 222
WBC: 4.93
ANC: 2.6

Something weird is going on with my joints in my hands/feet, though.  It started on Christmas, and I felt like maybe I had just done too much that day, and that my hands were just fatigued...but then it didn't get better.  The joints in my fingers are very sore and stiff - almost like I have severe arthritis.  The thumbs are especially painful.  I have a hard time opening bottles and jars, and they feel weak, like if I needed to pick up or hold something large or something heavy, they would fail altogether, and I would drop it.  The doctor tested my uric acid levels to make sure it wasn't gout, tested my tacro level to make sure that it wasn't too high, and was otherwise stumped as to what it may be causing my discomfort.  I told her that I felt stupid for mentioning it, but she noted that my liver enzymes were high (for me) and that my potassium was high - so there was definitely something going on there, they just don't know what yet.  She said that they could send me to a reumatologist, but that it was generally unhelpful.  I asked if people get GVHD in their joints, is that a thing? and she told me that it does sometime manifest in joints and connective tissues, but that it generally causes a stiffening and limits the range of motion, instead of causing pain.

As of my last appointment, she told me to go ahead and take occasional ibuprofen for the discomfort, but that if it didn't get better, they may want me to go back on a small dosage of steroids to see if that improves the situation.  (Not a fan of this plan.  Finally starting to see improvement from some of the awful steroid side effects, like not being able to sleep, wanting to eat everything that's not nailed down, and my lovely moon face and camel hump has finally receded a bit, so I'm not too keen on inviting all of those things back into my life.)  It's been almost two weeks.  My hands still hurt, so we will see.

Finally growing a little peach fuzz on my head.  It's strange colored, and like a fuzzy baby duck.  I don't think that I was prepared when I lost my hair for how long it would take to start growing back.  I am still very bald.  You can still see my bare head through the little bit of hair that has decided to grow.  It's been four months since I lost my hair, and it isn't coming in very quickly or very evenly.  The sides of my head are still quite sparce.  I will be wearing hats for quite some time.

Fuzz

(Before anyone wants to go and tell me how good I look bald, check yourself.  Imagine how you would feel being bald for 4+ months, not by choice - especially when you've gained 15lbs from steroid hunger and the full body view looks more like Shrek than Amber Rose. )

I'll be seeing the doctor again this week.  At my +100 day appointment I was told that my tests came back < 97% donor - or donor to the limits of the test - which is great, but at my last appointment, the doctor told me that more of the tests had come back and that one of the cell lines - my T-cells - testing came back 90% donor, 10% me, so they'll be continuing to test and monitor this every 4 weeks or so to check my chimerism. 

Still keeping myself very isolated.  Whenever I do venture out, I'm shocked about how icky people are in public places.  Way too much coughing and snarfling - I think I physically recoiled when I kid sneezed on his mom, behind me, in line at Walgreens last week.  I think I'll just order as much as I can online for home delivery.  Heading out to the store for a sale on toilet paper is just not worth it.  Getting sick terrifies me right now.

Stay well.  I plan to do the same.