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.