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.