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.

On With the Show

I was supposed to see the doctor today, but I just couldn't make myself do it.  The weather people had been calling for a snowstorm since last week, but thought that it would be fairly weak.  I'm okay driving in a little bit of snow.  What I'm not okay with is putting chains on my tires to get off the mountain, taking them off once I get down-the-hill, (in the possible rain), then driving the rest of the way to UCLA, having lab tests, an appointment, and getting vaccinations, driving most of the way back in traffic and the rain, and then having to lay on the ground and put my chains back on to get the last 20 miles home.  Nope, not okay with that. 

I've only actually driven myself to UCLA and back again twice since my transplant, so I wasn't up for an ordeal.  So I rescheduled.  I've been avoiding seeing the doctor and have been seeing the NP instead, and she has insisted that I need to see the doctor at least every third appointment....so it looks like its almost a month between appointments for me this time, as, what with holidays and such, the doctor didn't have any openings until the end-ish of February.  That's okay.  I do pretty okay on my own most of the time.  Oh, and we got eight inches of snow, so I'm glad I had the foresight to cancel early.

I've been undergoing testing extravaganzas with my dexa bone scan - which was ordered to check for osteoporosis - since I have been on prednisone for so long and it can cause bone loss.  Came back all good.  I've had an eye exam to make sure that my eyes are still producing tears.  You know how they test that?  They shove little litmus paper looking things in each one, tell you to close your eyes, and see if they water, with a foreign object stuck under your eyelids for five minutes.  Seriously?  Seemed a bit barbaric.  Mine watered adequately. 

They also gave me an eye exam (yay 20/20 vision in both eyes), and dilated my pupils, which I wasn't counting on.  The only other time that Keith didn't drive me to UCLA, and they dilate my freaking eyes!  I came out of the office, and I'm like, well, this is okay, I can still see okay.  And then I tried to look at my phone to see how long eye dilatation lasts.  Oh hey, up close I can't read or see a fucking thing.  Not so good for driving.  Not to mention the fact that I look at myself in the rearview mirror, and I look like an anime character with huge blown out black pupils.  "Oh no, officer, I'm not on any drugs, I promise."  Yeah right.  So I ended up sleeping in my car in the parking garage for a few hours before getting on the road.  The decision to drive myself was a poor choice on my part, I've just been trying so hard to give Keith some semblance of a life back, instead of having to be my chauffeur all of the time.  Bad idea this time around. 

Lets see, I also had an x-ray on my left ankle, as, no joke, I feel like it is sprained or broken most of the time.  No fractures or any sign of significant osteoporosis.  So it just hurts.  Which sucks.  I think my doctor put it into words best the last time I saw her: my CGVHD can't be measured by tests, it's mostly just measured by the way I'm feeling, which is so hard for me.  I want something that can validate it.  I want something, a test result, something that I can point to and say, "Look, see, the measure of my pain is right there.  It's a six or seven on the Richter scale, and this proves it."  Without scientific evidence, I feel so invalidated.  Keith was helping my put a TENS unit on my foot a few weeks ago, and noticed that it was incredibly swollen compared to the other foot.  Everyday it's incredibly swollen for no flipping reason, except my donors cells attacking my own, but I shove it in my boot, and carry on anyway.  Its entirely frustrating.  And it's not getting any better. 

One perk to keeping on keeping on: I did get to see these guys, up close and personal on one of my walks a couple of weeks ago, so that was neat.

Wild Burros

They tested my chimerism again.  That's the test that tells them what percentage of my blood is my donor, and what percentage is my own.  The me that used to be is gone.  I'm all donor.  Which is good, I guess.  After all, that was the goal.  Oh, and no CML.  The BCR/ABL test came back completely negative.  Excellent.

What is not excellent is the fact that my hemoglobin/hematocrit continues to be high.  I think that my doctor abandoned the idea that it is high due to living at high altitude, as my erythropoietin level is low normal.  Erythropoietin is the hormone that tells your body to make more red blood cells.  Generally if your body thinks that you are oxygen deprived - because you live at high altitude, or you have sleep apnea - your erythopoietin level will be higher, as it is sending a signal that more red blood cells are needed to carry oxygen.  Covertly, my doctor tested me for the JAK2 mutation.  It came back negative.  Why is this significant?  My doctor wanted to rule out a blood disorder, known as Polycythemia Vera.  Ninety percent of people with polycythemia vera have a JAK2 mutation.  I do not.  Just to be ultra sure, I had a bone marrow biopsy at my last appointment.  My NP emailed me to let me know that the tests were normal, but I haven't had a chance to discuss the results with the doctor yet.  So at this point I have polycythemia of unknown origin, which means that I have an elevated red blood cell count, or more accurately, elevated hematocrit, and they don't know why.

Having a higher than normal red blood cell count is not ideal, because it makes your blood thicker, making you more prone to blood clots, which could lead to heart attack or stroke.  So, thick blood equals bad.  So even though they don't know why I have it, they still may have to treat it, and one of the most common treatments, is - my least favorite - phlebotomy.  FML.  It is absolutely ironic that less than five years ago, my body couldn't produce enough red blood cells to keep me going, and I had to have blood transfusions every four to six weeks, and now it's making so many that they are going to have to bleed me.  Is this some kind of cosmic joke on me, or what?

I'm down to 4mg of prednisone, and I'm thinking about taking myself down to 3mg this week.  The fatigue is still ridiculous.  Daily naps are still needed, or else I'm falling asleep by 8pm.  The tacro shakes are back a bit, and my levels have been all over the place, and since I'm on a relatively low dose, they just leave that alone for now.  I asked when I can get my measles (MMR) immunization, since there has been another outbreak, close to UCLA, and was told that they don't give them until I'm off of immune suppression completely for at least a year.  With my GVHD joint pain flares, that doesn't look likely any time soon.  I've been getting headaches, which is unusual for me, but with the litany of issues I have piled on top of the numerous pills that I take, it's almost impossible to isolate any one cause.  So, I treat them by swallowing more pills.  (Ibuprofen.)

Hair is still bad.  It looks like I left it under the iron too long.  The front is just so damaged looking.  Still taking biotin, and I think that its beginning to grow a little longer, it just does not look any healthier, even though I do deep conditioning treatments a couple times a week.

Even frizz ease cant help this mess

Still wearing hat and wig in public.  Putting on the wig, putting on the show, is exhausting, so I just mostly don't go out in public.  Which is fine.  The dogs on my walk route, and the burros in the forest don't mind if I don't have any hair/have ugly hair as long as I have cookies in my pocket. 

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.

Day +100 Hard Core

Well, I made it.  Today is day +100 and I didn't die, so, success!

Blood counts:
HGB: 12.0
PLT: 172
WBC: 3.79
ANC: 1.6

Bone marrow last week did not go well. The nurse practitioner had a really hard time getting through the bone, and then once she did, there was no fluid to pull out. Dry tap. So they got a different NP to give it a try. It was a struggle. At one point she was bracing her knee up on the table with me, and pushing as hard as she could, and still couldn't get through. She was finally able to get in, and pull one vial of aspirate, but then the well dried up, and they couldn't get any more. (They needed three.)  So they took the one aspirate, and a piece of the bone and ordered most of the tests to be performed on peripheral blood.  And its a good thing too.  When I went back this past week, none of the bone marrow samples had sufficient cells for testing.  So I have two holes in my hip bone, but nothing to show for it.  I asked the NP if the bone grows back, and she said, "I would hope so."  Love the honesty.  Yeah, I would hope so too.

I also had a dental crown fall off this week.  (Again.  The crown actually initially came off a couple of weeks ago, but my doctors told me that they would prefer that I not have any dental work done while I was still on steroids, so I put it back on with dent-u-temp and hoped for the best.)  I'd been super dreading going to the dentist to have it fixed.  I hate going to the dentist the most because I hate getting the lecture about how my bad my previous dental work is, and how this silver filling is cracking my teeth, and this crown fits poorly, and this tooth has a cavity.  I was hoping he would just glue the crown back on and I could be on my way, but that is never the case, and it turned into more than I had hoped for, when he found a cavity in the tooth in front of the crown, that could only be filled when the crown was removed, so I ended up in the chair for over two hours having a filling, and then a build-up, and then getting the crown re-cemented.  When the dentist asked me why I hadn't come back to complete the other things that I needed done, I told him, uh, yeah bro, in case you couldn't tell by my bald head, I've had some other more important health issues to worry about lately.  I hate the dentist, but I'm glad I sucked it up and acted like an adult and got it taken care of, so that I didn't have to worry about it falling off again over the holidays.

It feels like my whole life is sucking it up and having to act like an adult, doing things that I don't want to do, all of the time these days.  There is no putting things off, there is no procrastinating, all the time it's hard core adulting every day, all day.  Doctors appointments, scheduling appointments, at home nursing appointments, driving in traffic, medication refills, medical bills, dozens of pills multiple times a day, broken down cars, loose dental crowns, showering with a plastic bag on my arm, antifungal bath powder, constant hand washing/sanitizing ALL OF THE TIME.  I know that sometimes you gotta do things that you don't want to do, but do you have to do them EVERY DAY?  Cause I do.

Despite that, here I am 100 days post transplant, and according to the doctors I am doing well.  I am <97% donor, which means that the transplant worked, and that the donors blood making system has replaced my own.  I've had no GVHD, no significant infections, and I've made it to day +100 relatively unscathed.  They pulled out my PICC line on Thursday, and I couldn't be any happier about that, as the skin around it was beginning to get very irritated.

No more PICC

 I still need to be very careful about being getting sick, as I was told that any type of infection could activate GVHD - which I had no clue about.  I'm still sleeping about 12 hours a day/night most of the time, and really don't have very much energy.  I'm starting to get a little bit more fuzz on my head, and it's almost more unattractive than being completely bald.  I anticipate that in another 6 weeks I'll look like a Chia Pet.  Still not sure what color I'm going to get, right now there's a bit of variety, so we'll see which ends up dominating.

Kitten fur

Christmas this year will be quiet, which is my happy place anyway, as I've always been an introvert, and generally find holidays and occasions exhausting.  My next doctors appointment isn't until next year!!!  (Ok, it's on the 2nd, so barely next year, but it's nice to know that we don't have to make the drive in the midst of the crazy holiday traffic.)   Keith has been amazing through all of this.  Extremely protective of me, the voice of reason when I'm on the edge, he's taken on so many of the household tasks that I'm still unable to do, and kept us both sane during all of this crazy. 

Thank you.  You're the wind beneath my wings. 

Day +43 Restrictions

Date: 10.26.18

Time: 3:33pm

Fun fact: Every time they draw blood, they do a "cross and type" test that tests your blood type because my blood type will be changing.  My doctor confirmed that my blood type will change from A+ female to B- male (meaning that my donor was a B- Male).  Crazy, huh?  This works because HLA typing doesn't have to do with blood type, it has to do with tissue typing.  This means that I will become a Chimera.  

"Chimerism is a condition whereby a person has not one but two complete genomes (sets of DNA) in their body. One genome is found in one region or organ(s), while the other genome can be predominant in other organs or tissues."

My blood will look like it belongs to a B- male, but any other DNA (hair, saliva, skin cells) will be me.  If I were a criminal mastermind, this would be ideal, but I'm not, so it just seems kinda weird and gross.  

I haven't been to UCLA since Monday, and I'm so glad to be home, but I still live with a bunch of restrictions.  Most of the risks associated with a stem cell transplant come AFTER the chemotherapy and the actual transplant itself.  Be The Match says, 

"Some risks are common like temporary hair loss and infections. Others are much less common, like your body rejecting the new cells and possibly death. Some risks are only with certain types of transplant. For example, graft-versus-host disease (GVHD) is only a risk after an allogeneic transplant (cells from someone else). 

The risk for complications is highest during the first 100 days after a transplant. This is because your immune system is new and needs time to grow stronger. But there can still be risks during your recovery months and years after transplant. "

One academic paper that I read said that over 50% of patients are readmitted to the hospital in the first 100 days following transplant.  I plan to avoid this by adhering to the post-transplant restrictions.  Some of my restrictions that will last until Day +100 or beyond:

- cannot go into public places without a mask

- must stay out of the sun between 10am and 4pm

- must wear long sleeves/hat anytime that I am in the sun

- must wear SPF 30 sunblock if going to be exposed to sun

- bed linens must be changed once per week

- towels must be washed at least twice per week

- must change to a new toothbrush every two weeks

- no gardening, digging in dirt, or touching soil or plants of any kind

- no dusting, vacuuming, cleaning bathrooms

- can pet cats, but must wash hands immediately after

- cats are not allowed to sleep on bed/in bedroom

- no cleaning litter boxes

- no drinking well water; can drink bottled or tap water only

- no eating food prepared by someone else, unless reheated to at least 165 degrees

- no raw or under-cooked meat, cheeses, eggs or unpasteurized dairy products

- leftovers must be eaten within 48 hours or disposed of

- no driving

- I still have my PICC line, so no lifting above 20lbs

- I must cover my PICC when I shower with a glove from hand to armpit

- avoid crowds; no going to public places when they are busy

- cannot be around anyone sick, or anyone that has been exposed to anyone that is sick

- cannot be around anyone that has received a live vaccine within 4-6 weeks

In addition, I still take my trail mix of medications several times each day.  My immune system is being suppressed (by Tacrolimus), so that my new immune system (the cells that they infused me with) can grow without the two going to war.  That means that I am extremely susceptible to any kind of infection - things that your body would normally be able to fight off could attack my body since I have little defense.  To try to keep that from happening I am on several medications that prevent infection.  Daily, I take Noxafil (an anti-fungal), Acyclovir (an anti-viral), Atovaqone (anti-fungal), and am supposed to get IVIG (anti-viral) infusions weekly to prevent infections.  Additionally, I am on a blood pressure medication (the Tacrolimus raises my blood pressure), magnesium (Tacrolimus eats the magnesium in my body), a liver protectant (Ursodial), an acid reducer (Tacrolimus can also cause heartburn), Prednisone (steriod), Compazine (anti-nausea), and my sleep aid -  which I have started again, since I think that the Tacrolimus is the culprit behind my headaches - Trazadone.  Tacrolimus sounds like a nightmare doesn't it?  Well, since it is the medication that is preventing rejection of my new cells, and working to prevent GVHD, it is a necessary evil right now.  I will most likely be on all or most of these medications for at least six months.

Gettting IVIG 10.18.18

Since I've been home, I've found that I can't really predict how I'm going to feel.  I've had headaches when I didn't expect to, been so tired that I've slept until 1:30pm in the afternoon, wanted to go take a walk, but didn't have the energy, and been unable to sleep in the middle of the night, even though I thought that my sleep issues were starting to resolve.  Every day is a new one, and I kinda just have to take it as it comes and not try to make any plans to be productive, since I never know how I am going to feel - if I'm going to have a debilitating headache, or need to sleep half of the day, which is frustrating, but I'm trying to give myself time and grace to heal.