Better Safe than Sorry

So I agreed to the Rituxan, but I made the stipulation that I didn't want to start until after the majority of the snow season had passed.  My joints have been getting worse.  My wrists hurt, and my foot /ankle hurts so badly, that it wakes me up at night.  Any time I'm sedentary for any length of time, I get very stiff, and it's hard to get moving.  So, I agreed to try the Rituxan.  I was to begin on March 30th, 2020, but due to the corona virus/covid19 pandemic, all of that is currently on hold. 

I haven't been to UCLA since the last week of February, and from the look of things, it will be some time before I go in again.  My nurse practitioner emailed me and asked if I'd like to set up a "virtual visit" and have labs done locally, but the only place to have labs done locally is inside our hospital, and I'm not going there.  Last week, our local mayor revealed that he had tested positive for covid19, and was in self isolation, so I'm being very careful about how much I go out.  Our state is currently under a "shelter in place" mandate, so I rarely leave the house, except for groceries or to pick up prescriptions, or on solo neighborhood walks.  I certainly am not heading down to LA anytime soon, especially when I know that they are treating people for corona virus at the UCLA hospital.  Not gonna do it.  I am still on a small amount of prednisone and tacrolimus, both of which suppress the immune system, so I am being even more careful than usual.  I'm one of the seemingly crazy people at the store in latex gloves and a mask.  We are already used to living super clean, so we already had hand sanitizer in the cars, Lysol spray, and bleach on hand.  My next appointment is scheduled for mid-April but I'm not sure yet if I'm going to keep it.  The way that I see it, aside from my joint pain - which they can't really do much about - I'm fairly stable, and the only thing wonky with my blood tests is the high hemoglobin, which seems to come and go.  (Hemoglobin/hematocrit was at the high end of normal range at my last two blood draws.)  If covid19 continues to be fatal for months, I will have to figure something out, with regards to having blood drawn, and maybe scheduling a video call with my doctors, but at this point, I'd rather be safe than sorry.

I'm continuing to taper VERY slowly off the prednisone, and hope to be off it completely, eventually here.  I alternated 2mg/3mg daily for over a month.  I tried to go down to 2mg daily after three weeks, but I was hit with extreme nausea and diarrhea, so I went back to the 2mg/3mg dose for another two weeks.  I've been taking 2mg for about 10 days now, and aside from the increased joint pain, and extreme fatigue, I've been handling it okay.  So, like I said, I'll get there eventually, but I just have to be patient with it.  I don't know if when I'll be able to stop tacrolimus.  I'm guessing it might be one that is with me for a long time, especially while I continue to show signs of GVHD.  I've been having the tacro shakes pretty badly lately, and I'm on a very low dosage of the medication.  My hands shake uncontrollably, especially in the afternoon - a couple of hours after I take my dose.  I definitely have a sensitivity to tacro, as I take .5mg daily, and my levels consistently run between 8-11, and my doctors are aiming for about 5.  I tried taking it every other day, instead of every day, and my levels were too low, so this is the best that we can do at the moment.  As long as it doesn't give me the debilitating headaches, I'm willing to tolerate the shaky hands.

In other news, I've been extremely busy lately, as Keith broke his leg two weeks ago, on a snowboarding trip.  Luckily he had some epic days on the mountain before it happened, and even was featured on the local snowbird guru's website:

Glad that he had a few good days of riding before this happened:

Fractured fibula.  Luckily, it was a clean break, and he should only need to be in a cast for four weeks.  The doctor said that it should heal completely, and after a week of rehab/a walking boot, he should be as good as new.  Unfortunately, four weeks is a long time to be on crutches, as he isn't supposed to walk on or put pressure on it at all, so it's making him kinda crazy.  It's his right leg, so he can't drive at all, and everything, every little task is incredibly difficult.  Taking a shower is difficult.  Carrying anything is impossible.  The only bright side in all of this is the the entire country is shut down right now, so he's not missing the last of the spring riding, because everyone is stuck inside their houses on lock down.  (If he wasn't hurt, he'd be climbing mountains, and riding back down them, but he's having to learn how to be a patient.  He's not good at it.)  I'm doing my best to be as good as a caregiver as he was to me.

Aside from that, I think that the biotin might actually be helping my hair growth.  It is still pretty damaged looking, but it's definitely getting longer.  A little bit actually peeks out from under my hat these days.  The front is still sparce, but at least its coming in some.  After eighteen months.  About time.

Eighteen months later

I'm also starting to see my cheek and collar bones again.  I've been following Weight Watchers for five months, and have managed to lose 25 pounds.  I still have a bit to go, as it seems like I've lost quite a bit of muscle mass, being on steroids for so long.  My body composition is much different than it used to be - steroids can redistribute your fat stores to your belly, your face, your hump, no place good, really - so I'm going to need to lose more than I planned on, and try to build some muscle to get my body back into a shape that I recognize.  Which, lets face it, was not exactly toned and fit before, but I'd still like to be a little stronger, and a little less fluffy.

So I've pretty much just been hiding out, which - in all honesty - most of the time, is cool with me.  That's something about me that really hasn't changed.

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.