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.

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 +84 Administrative BS

Still have weekly appointments at UCLA, and weekly IVIG infusions at home.  My predinsone (steroids) have been reduced from little to none just this past week, and I'm sleeping 12+ hours most days.  I wake up at a normal hour, but just can't seem to make it past 9 or 10 am most days, and end up back in bed until 1 o'clock.  On the rare days that I'm not able to take a nap, I'm usually out for the count and fast asleep by 8pm.  Its definitely an adjustment, and I hope that in time, I won't feel so exhausted all of the time. 

Adding to my exhaustion is the 8+ hours I spent on the phone with the insurance company and the mail order pharmacy that they required me to use for one of my medications, last week.  The prescription was initially submitted to them on November 15th.  First I was told that there was a problem with the quantity, and getting approval, then I was told that a pre-authorization was required.  I worked with the dr's assistant to get that taken care of.  Then I was told that a prior authorization was not required, but that the pharmacist put the medication on hold because it "interacted" with another of the medications that I am on, (uh duh, I think that my doctor is probably aware) and finally they promised to expedite the shipping on November 27th. 

I made them give me a tracking number, but every time that I pulled it up, there was no information available.  My doctor called in a "back up" to my local Walgreens, so I called them to see if I could get the prescription filled there, since I was told that I could not miss a dose (Tacrolimus).  I was told by Walgreens, that my insurance would not cover the cost through them, and that if I wanted to fill it, it would cost $135 for one month supply, out of pocket. 

Finally, when I had one dose left, I called the mail order pharmacy again and make them look up when it had been shipped and where it was.  On the 30th they told me that a label had been created on November 27th, but the medication had never actually left the facility.  Seriously?  So I asked them what I was supposed to do?  I can't miss a dosage, my insurance company is requiring me to have it filled through them, the shipping was supposed to be "expedited" three days earlier, and I only had one day's worth of medication left.  I was told that my local pharmacy could fill it, and that they would give them an "override" so that insurance would cover all but my copay.  I called Walgreens and told them that they would need to call in for an override, so I could fill the medication through my insurance.  They called the insurance company/mail order pharmacy and were denied.  Seriously?  Seriously?  So....fuck me.  I had to call the mail order pharmacy again, speak to another agent, who also promised an override, but this time actually got it to to through, and then wait for Walgreens to fill the prescription so that I could go pick it up.  Hours and hours spent on the phone to get a single prescription filled.  Is it any wonder why I'm so tired?

The original prescription from the mail order pharmacy came in the mail today. 

Still very little hair.  The doctor told me that generally after transplant hair doesn't start growing back until between days +60 to +80, and that it will grow in very slowly.  I have a bit of "kitten fur" as Keith calls it, coming in, but I still look completely bald unless you are standing within 6 inches of me.  Speaking of which, please don't.  I still need to be very careful about being around people and wear my mask whenever I go anywhere, or see anyone besides Keith, or my home nurse. 

Next week at my UCLA appointment (pending insurance approval) I should be having a bone marrow biopsy that will give me more information about whether or not there are any lingering leukemia cells, and the percentage of my cells that are donor, and the percentage that are my old cell line.  The less leukemia, and the more donor, the better.  Hopefully this poke in the bone goes as easily as my previous ones have.

Day +65 Sleepy

Date: 11.17.18
Time: 5:10pm

Blood counts: all good

Still struggling with fatigue.  I slept all day again yesterday.  (Hey, at least I'm sleeping now, right?)  My prednisone has been reduced to 5mg daily, so that is probably part of the reason why I'm so tired.  The edema...the edema is still there.  Last week, the doctor finally agreed to let me take lasix, which is a diuretic or a "water pill" and it seemed to be helping some.  However, this week, I showed up with what looked like a razor rash on my shins...turns out, lasix has a "sulfa drug" component.  Which I am allergic to.  So no more lasix.  I've been doing my best to avoid a lot of salt, and wearing compression stockings, but every morning I wake up and can see the seams of my pants imprinted in my legs from ankle all the way up my thigh, so I'm retaining quite a bit of water, but can't really do much about it.  Since I'm not having any breathing or heart issues, the plan is once again continue to monitor, and do what I can, personally, to try to keep myself comfortable. 

Still very little hair on my head.  I'm starting to get a tiny bit of stubble, but at the rate that it is growing, I will never have long hair again.  I do wear a wig every once in a while, but if I'm doing anything other than sitting around, they make me really hot really fast, and it ain't a pretty sight when I start sweating my bald little ass off.   

Sitting around my house with hair.

So really, I sleep a lot.  I do a few things around the house when I'm able.  I eat more than I should for the level of exercise that I get (slim to none), and I'm still pretty much on lock down at home, except for my weekly appointments at UCLA, which is for the best, because I'm terrified on getting an infection (a cold, the flu) and the less exposure that I have to people, the better.  I'm beginning to realize that my recovery is going to take a lot longer than I had originally anticipated, since I can't even make it through an entire day right now without a 4 hour nap.

Day +22 Surreal

Date: 10.05.2018
Time: 8:15pm

HGB: 12.6
PLT: 159
WBC: 5.62
ANC: 2.73

Well, I continue to lose my hair. I thought that I was pretty much as bald as I was going to get, but as I was washing my...head (by the way, what exactly are you supposed to wash your bald head with? Body wash? Shampoo? Mr. Clean? ) A bunch of little whiskery hairs kept coming off on the wash cloth. I have one patch right in the front that is still hanging on, and I'm convinced that if I hadn't shaved it, I'd have a cupie doll curl right in the top front. How attractive.

My face is also filling out and I'm starting to get the traditional "moon face" that usually goes hand in hand with prolonged high doses of Prednisone. I look in the mirror and I hardly recognize myself.  I tried to remedy that somewhat by putting on makeup the other day, but the Tacrolimus that I am on makes me so shaky that I ended up looking like Edward Scissorhands - well bald, fat Edward Scissorhands.

Things continue to go well healthwise, and my Dr. said that I'm doing "so, so, well" when I saw her yesterday.  I feel like a shell of a human being though.  I'm not allowed yet to resume my life in any way that feels even a little bit normal, I look like the marshmallow man version of myself, I barely sleep, and I spend my time devising menial tasks to keep myself occupied.

Day +15 Outta the Joint

Date: 09.28.18
Time: 8:27pm

As of 09.27.18

HGB: 11.3
PLT: 97
WBC: 5.83
ANC: 3.06

They let me out!  Not without restrictions, but they decided that I was doing well enough to be discharged from the hospital to the "hospital adjacent" housing, and Keith came and picked me up on Wednesday night!  I got unhooked from my trusty IV pole, threw on my wig, loaded up my tank top/ lounge pant gear into my mega suitcase, and moved the half a mile from UCLA ward 6East to Tiverton House! 

Not sad to see you go.

Still have my Picc, but at least I'm detached.

My home for 21 days

Tiverton is housing mostly specifically for UCLA medical patient recovery.  It's nothing fancy, but it is convenient.  So I've had two nights now where I haven't been woken up for vitals in the middle of the night.  Two nights of sleeping next to Keith.  Two nights of freedom, where I've been able to walk in the open air and feel the breeze a bit.  (While masked, and sanitized, and extremely careful, of course.) 

The hard part is that I have little to do, except focus on recovery.  I am required to have a caregiver 24hours a day, and required to stay within about 15-30 minutes of the hospital in case anything happens and I need medical attention.  So, it's like we are on vacation in LA, but we are not allowed to go anywhere crowded, I still have dietary restrictions, so I must prepare most of my food myself, and we can't really go too far since traffic is always outrageous.  I have been able to walk outside some with Keith.  We try to go on less busy streets and not during peak hours, and it feels good to try to regain some of my strength. 

So, I'm still very fatigued, still having a lot of taste issues (things taste and smell gross/weird) and generally feeling slightly under the weather most of the time.  I'm 11 different oral medications that I take multiple times a day, and may still have at least one med that I need to get by infusion on a weekly basis (IVIG).  I'm on a huge dose of steroids right now (70mg per day), so I haven't lost more than a few pounds since they make me feel jittery and ravenously hungry most of the time.  They will begin to taper these down, but it's a slow process, they need to do it slowly so that I don't have any flare ups of GVHD.  Until then, at least my mouth doesn't hurt as much anymore and I can actually eat without too much discomfort.

I had my first "clinic" appointment yesterday.  Everything looked ok, including my counts, so they gave me a couple of days off, and I don't have to be seen and or have blood drawn until Sunday.  The clinic is less than half a mile from where we are staying, so I have been able to walk there (with Keith as escort) and hopefully I can continue to do so. 

Tres' Chic

So good things are happening.  Cleared to brush my teeth with a real toothbrush instead of a sponge, able to take showers again instead of baths, unhooked from my dance partner, and reunited with my real partner.  It may be some time before I am released to go home since we live so far away, but for now my quality of life has definitely been improved this week.

Day +11 Wigging Out

Date: 9.24.18
Time: 5:42pm

HGB: 9.4
PLT: 13
WBC: .88
ANC: .15

As you can see I have a few neutrophils floating around in there.  And thank goodness for them.  I've been on iv morphine every 4 hours for the past four days - the pain in my mouth and throat has been so intensive.  Eating half of a peanut butter and jelly sandwich last night felt like swallowing glass.  The neutrophils are going to help me to heal faster so that I can swallow again without immeasurable pain. 

My team of doctors are tentatively excited about these little cells.  The didn't expect to see them on the upswing for a couple of days more, at the very least.  In fact, for the past four or five days they'be been telling me that things are going to get worse before they get better.  I'm hoping they're wrong.

Doing a lot of morphine sleeping, a lot of drooling on my pillow instead of swallowing, and a lot of slouchy hipster hat wearing on my bald little head.

Before I left for the hospital a good friend let me try on all of her wigs.  The short blond is going to be my go-to.  And maybe the long blond when I want to feel a little bit country.  (Thanks Marilyn & Chris.)

Scandanavian Bob

Mad Scientist

Storm of X-Men Fame

Midlife Crisis

Texas Wife

Aside from all that, just hard at work growing cells here.

Day +7 C'est La Vie

Date: 9.20.18
Time: 7:34pm

HGB: 9.8
PLT: 23
WBC: .08
ANC: 0

I have no hair.

Cancer Style

Lex Luthor Look

It was coming out in strands when I touched it, and getting all over my bed when I slept.  It had to go.  Hopefully it doesn't take too long to come back again.

My mouth and throat are sore and peeling.  Eating, drinking, swallowing pills, hell - swallowing my own spit - hurts today. 

Making it through, regardless.