i only like to write when it seems like a good time to go to bed.

It has been brought to my attention as of late by a few friends (Dawn & co., Anonymous Alaskan Cowboy) that I have been more than remiss in updating this blog, post-escape from the hospital. I will go one step further than their kind words of concern about my well-being and possible disappearance from the face of the planet and say I have been doing a crap job of keeping this thing up. I don't even have a litany of reasons or even a short list of reasonable excuses. What it boils down to is that I just haven't felt like it. I have felt like wrapping up in my fleece blanket in a recliner and watching TV while my heavy painkillers did their work on the cystitis that raged in my bladder when I got out of the hospital. After that, I felt like knitting furiously on a baby blanket for incoming niece Beezus Skeletor while wrapped in my blanket, in the recliner, fighting the effects of steroids which were fighting the effects of the angry graft-vs-host rash camped out on my face. More recently, I have just felt ponderous, cabin-feverish, and very invested in reading all the books on my Kindle and watching all of Fringe. (I'm thinking of making a stamp of my own face -- for once, not a friendly acquaintance -- in the vein of the Etta "Resist" posters. I don't like the idea of white, arrogant men in suits bossing me around and invading my privacy.) So really, the tl;dr of it is that I just haven't felt like writing. Lame.

What would I write? I guess I could have been writing about my outings, maybe my personal revelations. My outings have been mostly going to the grocery store or Target for the usual mundane needs like Ovaltine, winter squash, and skinny jeans in my new, post-steroids/sitting-on-my-ass size. I don't like that before I started having energy to move about more than just around the apartment, I was on both steroids and a higher-calorie diet than I am used to. Don't "world's smallest violin" me when I tell you I went from a 0 to a 3. I'm upset about it. But I digress. I have made three different ferry trips to Bainbridge Island; I took a 4-week ballet barre/Pilates class to repair the wasted muscles and lack of coordination from all the medical hoopty-doo; my dad and I took an adventure to my favorite camp and then on to the Bavarian Village of Leavenworth; Older Brother and SIL joined me at EMP, once I finally learned I could get a member pass for the weekend through the clinic.

As far as personal revelations, I will maybe wait until another post this week or next to get into that. I've recently/repeatedly had some frustrating conversations with someone about the ideas that have formed in my head since Day 0 on life, satisfaction, priorities, and emotional health. I have noticed that some people celebrate growth and some people find themselves very out of the loop and upset that a person's perspectives going through such a trial as mine not only are spared the stasis chamber, they get turned on their heads. But I hate to ramble in vagaries and much as I hate to be on the receiving end of vague rambles of someone else's nonsense loop so I say again I will leave that for another time. I don't want to lose you before I get to the news portion.

Here is the latest in almost-cancer news:
- I have marrow churning out 30-40% cells (ideal is 50-60%, which is where I am expected to be, right on-time this summer) and completely disease-free. Did you catch that bit after the parenthetical? My marrow is free of all that almost-cancer crap that required the bone marrow transplant. I don't have to live in fear of acute myeloid leukemia! Victory!

- My Hickman line is being pulled on Thursday afternoon. The tubular portal to my heart is finally leaving me. I can't wait to take a shower without having to hold Aquaguard against my armpit because the stuff refuses to do the one job it was made for.

- My last day in Seattle is this Friday. After a mid-day clinic appointment, my mom and I will head south to her place in the sticks where I will stay through the holidays and get back in shape to the sounds of goats and the creek and the rain. My goal is to turn a soft 115 lbs into a toned 112. I have a stationary bike to use for cardio and a set of resistance bands for strength.

- It looks like Industrial Design is in my future, if I can figure out how to atone for my defaulted loan sins satisfactorily to qualify for grants and loans again. Despite being tired of Seattle's size and cost of living now, there is a very good chance I will come back up here for school. I had my hiatus, my five-plus years to deconstruct, rebuild, and reassess what I can do to experience satisfaction and success in goal achievement.

- My hair is growing back and the skin on my face has gone bananas again. The windrash look I am sporting with my obvious eyebrow and eyelash growback (head hair stays under the beanie) makes me more self-conscious than I have been since I was fourteen. I try to not let it get to me and instead celebrate the happy in seeing my eyebrows look stronger and perhaps needing a wax, plus all my eyelashes still looking 1/4 length but all present and accounted for. Sometimes it's tough to look in the mirror and see a reflection that is now familiar but still fails to look like me. Someday the ship will right itself, I'm sure.


Well the Ambien has finally kicked in, so that's my cue to go to bed. Thanks for being here!

Emerald City of bye-bye hospital stay GIF ROUNDUP!

Seriously; I have worked hard.

Mom and I have watched a lot of Gilmore Girls on a TV up near the ceiling, waiting for
my neutrophil counts to clear the "discharge threshold."

And then they did! 

I was so excited to leave, I ran around my hospital room, packing and tidying up
...and also just running around.

And I called my family and friends who were all as pleased as me.

I called my brotherdonor and even though I had to leave a message,
I know we did our happy dances together.

For a while, I waited giddily for my discharge paperwork...

...but forgot how long it really takes to get discharged from a hospital.
I did some half-assed crafting and waited impatiently.

Finally, they let me go and Mom and I whooped it up all the way to the apartment.

This is just true.
I wish this was a better .gif I stole because it looks like Paris has a tic.

Emerald City of quiet confinement: day 17

When you walk into my hospital room, you have to push hard against the latch. It is loud and requires just enough to be too much force. My bed is in some weird combination of up legs, raised head, something that looks like contortion rehearsal unless I am trying to sleep, in which case it is as flat as a regular bed because I only like sitting folded in half. Flat almost lets me lay on my stomach, with pillows bolstering me at odd angles so the clips and end caps and tubes snaking out of my chest or worn like a lanyard don't dig too savagely into my skin.

There is a giant window past my bed, from which I can see Lake something and the new Husky stadium being built. The sun streams in all day, and I rarely have to turn on an overhead light. The window is so large, I have to make sure to close the blinds before I go to sleep or I will wake up at the crack of dawn with morning light all over my face. Between the bed and the window is a fold-down chair for visitors to sit or sleep; a small dresser nightstand in which I keep my spare pajamas, art supplies, and soft hats; a bedside table that spits out a dining tray table with a push of a button and a shove, which is currently home to my water pitcher, Kindle, writing paper, lotions, lip balm, and case of DVDs. There is a cork board directly opposite the visitor chair to which I have pinned the cards some of you have sent, beautiful photos my elder brother took at Mt. Tabor Park, the chart that tracks how many laps I have walked around the ward (10-ish is a mile and for every mile one walks here, one receives a footprint sticker on the door of one's room), and the chart that tracks my blood cell levels. Today was an up/down day: my white blood cell count doubled, but my neutrophils tanked again and hematocrit and platelets are down. This is normal behavior, but I wish my neutrophils would hurry up and propagate. There is a calendar on the cork board, but the days that concern me are the days written on the white board on the opposite end of the wall. That is where we count what day since cell day it is currently, today being Day 17(!!!). I'm betting I will be discharged Friday or Saturday, otherwise known as Days 21(!!!) or 22(!!!). In between the cork boards is the info-input computer the nurses and techs use and above that a flat-screen television with built-in DVD player. I have been watching a lot of "Gilmore Girls."

Next to my bed is the restroom where I shower sitting down and use the toilet into little "hats" so the staff can monitor my output. Closer still to the bed is the sink and mirror. I do my hand washing, tooth brushing, and hair missing here. If my hair would all fall out at once, I wouldn't be so dismayed to look at my reflection, but right now I am patchy all over my head and frankly look too much like a cancer patient for my taste. My eyes are still bright, though, so that counts for something.

It's 11:30, almost Day 18. Cross your fingers my counts are way up.

Emerald City of blurry eyes: day 12 (50th post!)

My eyes are blurry. I think it's because of all the dilaudid I am on. I have a PCA of the stuff and that little button gets me through the day and helps me sleep at night. Mucositis, progesterone cramps, body aches all plague me constantly. It is Day 12, though, which means I am about halfway through the hospital time, and nearly to engraftment. Once the marrow has engrafted and starts making me blood cells, my pain will subside and the fatigue that has a grip on my body will begin to lift.

There's not a lot to report today. My platelets and hematocrit are low enough to likely require a blood transfusion. I have already received two platelet units this week, but transfusions are normal and expected. The sores in my mouth are starting to heal, but my throat and stomach are still raw. My hair is falling out. I buzzed it all off my head because it was starting to look patchy and now it looks buzzed and patchy which I think is a slight improvement. I have to wear a hat to keep warm. Who knew being bald would be so chilly?

The window in my room is massive and lets a lot of light in. I can see boats on the water from my bed, past the backside of the new Husky stadium. When the sky is very clear I can see the Cascades on the horizon. I love being so high up on the seventh floor because the gulls hover at this height and swoop past my window all day. It's like being in a giant, HEPA filtered nest.

I attended arts & crafts time with my mom today. We made shell-covered picture frames and mirrors. I think Mom should put the picture she took of me making my frame in my frame. Meta, baby. I have been knitting a bit, as well. I made myself a cute cotton hat and am working on re-working the baby socks I messed up a while back that I am making for my nearly-here second cousin. It's hard to concentrate because I am always tired or have shaky hands from fatigue. It's nice to be productive, though.

Some cards and small gifts have shown up in the mail lately. Thank you! I love reading the kind notes from my friends and pinning the cards to my cork board. They live next to the chart that records my blood counts and another that records the number of laps I have done around the ward. I have walked a little over three miles! It's funny what gives me joy these days. Not surprising to love getting mail, though. It's a lovely feeling to have concrete proof that people are thinking of me and sending positive vibrations through the universe at my healing body.

The strain on my eyes is giving me a headache, so that's all for now. Thank you for your well wishes and know I love you all!

Emerald City of WHERE IS MY BODY? day 3

Emerald City of the Drink of Despair: day 0 - 4

Ah, that moment when you reach an acceptable stopping point on a project, only to review it later and catch grammatical errors that are too late to fix but not sly enough to go unnoticed. I hope you will look past. This video has not been optimized for any devices. It has been amusing to make. Please forgive the crampy writing...my brain hurts. Next one will be so much better.

And every chemo pill I swallow makes me feel like Dumbledore trying to get Salazar Slytherin's damn locket.

Emerald City of Chemotherapy Conditioning: day 0-6

Today was my second day of Busulfan. I have two more days to go and then I go to the hospital. Two days of Cytoxan and a day of rest and then it's DAY ZERO, Y'ALL.

My blood counts were already super low yesterday, so I spent most of today hooked up to a super-concentrated red cell product. Donor blood, B neg. Hourly blood draws to check my chemo levels, napping, and chatting with my mom. It really wasn't all that bad. The infusion room mattress was Tempurpedic and there was cold ginger ale down the hall for stomach upset. I had a bit of a swerve-y stomach today, but mostly my anti-nausea drugs and Busulfan all just made me real tired. I think tomorrow might be rough. Walking to and from the restroom always makes me feel like I've speed-walked a few miles and hopped right in to bed without cool down or stretching, out-of-breath and sore all over.

My mind is constantly begging me to let it doze today. Right now is no exception. I can't focus on anything, not even television, not even sitting upright in the bath. Not even writing this blog. But I guess even that has merit as far as documentation goes.

I'll tell you about some things of which I fond: funny, friendly nurses; medical staff, family members, and friends who understand what a mind-fucking experience this is and show me extra love and never mind when I cry a little; ginger ale; five kinds of anti-nausea drugs; ginger ale and Japanese soda fizz candy; junk TV and Gilmore Girls; sleep, naps, nodding off; beautiful summer days where the sun sparkles off the water and almost hurts my eyes from six floors up; chicken with broth over rice; paper letters in the mail; dreaming big, reasonable dreams.

Good night, y'all. I love you!