Friday, December 27, 2013

short-span time capsule of good feeling

I came across a small, floral gift bag the other day when I was organizing the poor job I did of unpacking days 0-94 post-transplant. All the items gathered up from the hospital and a fair amount of the books and art supplies I took to the apartment had been sitting in little piles under the window, including this little bag stuffed with cards and letters. I was having a tough day, feeling isolated and stagnant and more than a little uneasy about what 2014 will look like. The bag tipped over as I picked up an armful of sketch books and out tumbled all the cards and letters I had received when I was feeling the worst. I remember the arrival of each and every one, but my brain function was temporarily handicapped following the massive dose of chemo pre-transplant and as went to put them back I realized I couldn't recall the contents of most of the correspondence. I sat down and read every one.

I usually don't call people by their names here but only lend an initial in hopes I can preserve the privacy of my friends and family. These cards and letters revived my sodden heart this week, cheering me up all over again and rekindling the strength they lent me in the hospital and after. They appeared at my feet when I needed them the most and I think the authors ought to get some first-name credit. I am away from the bag of letters tonight and threw a handful in my suitcase to take with me to Black Butte, so consider this representative of more love than my heart can hold. Quinn started the idea in my head for acknowledging some folks who have sent concrete reminders that I belong to a bigger community than what I can reach with one arm the night she sent a text just to tell me she is grateful that I am here. It made me grateful to be here, too. It made me grateful to have so many connections to some quality humans I have the honor to call my friends.

The young daughters of a coworker of my now-ex sent me drawings portraying me as a healthy human, sometimes laying in the grass to stargaze, sometimes with a mermaid. Josh pinned to my cork board  photos he had taken of sunset at Mt. Tabor. Annie's many cards told her side of our pen-palling, including her travels and her new beau. Abby sent humorous cards and games along with her survivor-mentor brilliance and sister/auntie love. Dawn had lovely words of encouragement, written in stanzas only a writer of her caliber and spirit can concoct. Kris bolstered my strength all the way from Hawai'i and reminded me that I go through this on my own but not by- or for  myself. Hauss' existential pondering and personal updates brought my hometown to my hospital bed, where I could put myself back across the living room/service counter/giant bowl of vegan something from him while we unravelled the universe and complained about non-communicative bosses. Kenji's flawless handwriting considered the implications of deep love and what is done to keep it at arm's length lest we lose our priorities in the process of answering love (familial, romantic), and managed to expand a roomful of philosophy from a zipped-down few paragraphs. Ethan told a beautiful love story about a Southern boy and a Texan girl, intertwined with quarter-life contemplation and whether a roommate who lived near the Fleshlight factory was a wise choice. Sean offered to send mackerel to the seafood capitol of the PNW, got himself into peril in Finland and demanded I get off my lazy ass and fly to Helsinki to use my Russian mob connections to get him out of there and back to US soil.

These letters have lifted my spirits and reminded me of what an incredible web of people exist just beyond my immediate family. What you have done by writing me letters and sending me postcards has made me feel connected to each of your distinct and treasured personalities. The people I call my friends are cast widely around North America and points further out, and every single one tells a story that is purely their own. Most of the people who wrote to me because I asked for letters didn't bombard me with platitudes (my most loathed conversation block), but told me stories of their lives, shared their perspectives about young adulthood in the 2010's, built narratives I could get lost in, told me specific things they believed in about me and my fight, and knew I would get their humor and play along even  if only in my head while a tube hanging out of my chest pumped fluids and a dilaudid drip. It's true, by the way: I made the choice to kill those pimps and I never shy away from dealing with my own decisions.

If someone you care about at all ends up with a cancer diagnosis or some other condition where they are going to be feeling terrible for a long time, one of the best things you can do is send a letter or card. Put as much of yourself as you can into what you write, even if it rambles or you are afraid you are sharing too much. If what you have to offer is your heart or the present point on your journey, or your killer wit, put it on paper with the maximum amount of you possible. Form doesn't matter, nor do formalities. Skip the "get well soon" and replace it with a story. Junk "I'm sorry you aren't feeling well" and offer, "this is what I see in you that makes you special/important/dear to me. Thank you for that." If you are funny, be funny. If you are a romantic, run with it. If you are ever the philosopher, don't shy away just because it might be too heady. My bag of letters is like a paper version of a weekend spent with some of my favorite people, just as they are. My letters ground me in a place in my soul where I remember that my community is on fire with brilliant minds and hearts too outstanding to not adore. Having them at my fingertips is a brand-new sail after trudging through this bit of recovery has tattered all the others. I love you guys; it's time to start writing you back.

Monday, December 16, 2013

finger cancer and ocean camp

I should change the name of this blog to "Actual Cancer" because even though MDS is almost cancer, I have had actual cancer in my vulva and now in two of my fingers. That's right, I have finger cancer. I might also have toe cancer. Unreal. It's related to my aggressive case of HPV, and has destroyed the nail bed on one of my fingers and is threatening to do so to another. A biopsy a few weeks ago turned up cancer cells and not the benign wart tissue we were hoping for. I had X-rays taken on Friday to see if the cancer cells have spread to my bones, and I will have to have surgery on at least the really bad finger. The outcome of this surgery in its best-case scenario is "we will try to save as much of the tip of your finger as we can." This makes me feel sick to my stomach. I also have new areas of concern in the bikini zone, so I have to admit to a little bit of freaking out. I'm scared of cancer cells spreading to my bones and my lymphatic system. I desperately want to get this cancer crap behind me. Maybe finger cancer sounds like no big deal or the punchline to some joke, but after everything I have already battled a little bit of finger cancer is cause for alarm.

Since Seattle, I have had two colds and a sinus infection. As a result, I am more out-of-shape than when I left. I feel pudgy and gross. I bought myself Zumba 2 for the Wii and a stability ball, and there is a recumbent stationary bike I can use if I can drag it out of the room with the cat box, so now that my airways are clearing I should have no excuse not to exercise. Except I am so tired. So very tired all the time. Granted, regular exercise should help with fatigue, but holy crap it is hard to start my body moving. It's like my limbs are full of wet sand.

There are a few things I would like to do next summer, including Camp Koru's surf & stand-up paddle board program in Hawai'i. I have applied and need to have my doctor fax my medical release, but the hard part (if I get a spot at one of the camps) will be raising the funds for my airfare, but it looks like there is the possibility of securing a scholarship. Cross your fingers.

Thursday, November 7, 2013

Cookie time!

I want to share the delicious pumpkin-oatmeal cookies I made:

Preheat oven to 350*

- 2 1/2 c all-purpose flour (or 1 teff:2 rice:1 tapioca blend with 1/2 t guar gum)
- 1 1/2 c oats
- 1 1/2 t cinnamon
- 1/2 t nutmeg
- 1 t baking soda
- 1 1/2 t fine sea salt

Cream until fluffy:
- 1 c room temp butter
- 1 c sugar
- 1 packed c dark brown sugar

Add to sugar/butter:
- 1 large egg
- 1 c pumpkin purée

Mix in half the dry ingredient combo until combined, then mix in the rest.

(Optional: mix in by hand 3/4c - 1c chocolate chips)

Spoon out 2T ball onto parchment-covered cookie sheet and bake 11-13 min or until golden brown edges.

Eat when not too hot to pick up. Save some for later.

Tuesday, October 22, 2013

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!

Monday, August 12, 2013

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.

Monday, August 5, 2013

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.

Wednesday, July 31, 2013

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!

Tuesday, July 16, 2013

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 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.

Saturday, July 13, 2013

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!

Thursday, July 11, 2013

Emerald City of getting some tough outta this catheter: day 0-8

Ladies and gentlemen, I am proud to introduce you to my Hickman line:

If you look closely you can see where it threads under my skin and over my collar bone. From there it dips out of site into my jugular vein and down into the superior vena cava and ends just before the valve there. I was squeamish about having it put it and I am still a little nervous about when I will need to flush it with saline and heparin on my own every day, but for now it is pretty much under the jurisdiction of my transplant team. I wear an occlusive bandage over the port opening that has a rectangle of anti-infection gel that will need to be changed once a week, but this is another thing I can let my nurses do for me until I am released from the hospital. The two-prong ends are color-coded to determine the prong's proximity to my heart. I forgot to ask why. It reminds me of a snake's tongue, so I am considering naming it Harry after the famous parselmouth. 

Getting my line put in made me feel a bit more tough than I have been lately. My deep periodontal cleaning Wednesday went a much more smoothly than Monday's as a result. Thank goodness... it is mortifying to be a grown woman with a serious dental anxiety problem. 

After a couple weeks of non-stop clinic action and restless sleep, I finally get a single chill day today. Chill is relative, I guess. Today is Chemo Class. I have been taking my antibiotics and liver protector and tomorrow before class I will get my anti-seizure medication that I will need to take 30 minutes before I take my Busulfan and then we talk chemo with my team nurse. I'm pretty sure I get my first dose then, but it might not be until Friday morning. Friday is the start of crazy blood draw marathons, where I have a blood draw at 7am, take my Busulfan and then continue to have blood draws pretty much once an hour until 3:00 so they can track the my metabolism of the chemo drug. Saturday looks about the same, and I think Sunday. I check in to the hospital on the 16th and that is when I will switch from oral chemo to an infusion drug called Cytoxan. Wow, it just sounds dreadful! It makes me think of boutique rat poison for psychotic, murderous wives. 

I've been enjoying my time with my mom this week. She lets me be quiet and contemplative when I need it, makes sure I eat something healthy other than oatmeal all the time, encourages me when I am crying or feeling uncertain, supports my post-transplant life goals, and is quick to let my punchiness after a long day throw us both into giggle fits. It's too bad my transplant is the reason it is just the two of us for a little while, but I am really glad she is here. She is an important member of the support team that I have and treasure all my heart. Pretty soon, her partner, my brothers and their ladies, and my dad will all be here to support me and T, my amazing donor-bro. I am blessed to have these people! I have been receiving lovely texts, letters, and emails from all sorts of friends lately, so if you are one of those please know I hug you with my mind every time I hear from you. I can't wait to get back to you all for river floats, campfires, dress-up dining out, dinner parties, corn hole, deep chats, and next summer's Color Run!

525 Minor Ave N
Apt 311
Seattle, WA 98109

Tuesday, July 9, 2013

Emerald City of imminence: day 0 - 10

It looks like I did some insomnia rambling the other morning, and I don't know that I made the sense I was trying to make. Oh well. It's a start. I have had furious writer's block lately, mostly due to exhaustion and a little bit overfull of feelings. Not everything I have been feeling or thinking has been negative or down; there has just been a lot of it. It's hard to tease it apart when I'm too tired to look at screens or paper. Yes, this is just reiteration of what I wrote last time, but I hope that with enough tries I can get it right.

Today was Hickman line day. A Hickman line is a central port catheter that is threaded under the skin on one side of the upper chest, over the collar bone, and into the jugular vein. It makes for easier blood draws, infusions, and anything else one might need an IV for. The line is named for Dr. Hickman, who invented a little silver-infused cuff on the catheter that prevents infection by encouraging the patient's body to build up a bit of tissue around the cuff near the surface of the port entry. When they pull the line at the time of removal, the cuff sometimes detaches and stays behind as this little inert bump under the skin.  For now, I have a forked tube sticking out of my chest that requires careful attention, but at least I won't need to be stuck with needles at all for the rest of my time here. I was consciously sedated for the procedure, but I remember most of it. I'm glad for the memory because it is an unusual experience but with the sedation the pain and pressure of it were really no big deal. I think I dozed off for a little while toward the end. The most painful part was the burn of the numbing injection (lidocaine?), and there was and still is discomfort from the vessel dilation. The best bit of the day was meeting Jim the radiology tech. He was a head designer for Nordstrom for twenty years before deciding to pursue a career in the sciences and looked, spoke, and had the mannerisms of Tim Gunn. If I had met him after the sedation kicked in instead of before, I would have been absolutely convinced Tim Gunn was in the room, making sure the catheter was dropping into the right vein.

To some of the point I was trying to make in the other post: please tell the people you love and like that you love them and why you like them; say something nice to a stranger or server or customer service worker; show as much kindness as you can, as much as you can, even if it feels awkward or silly or uncool. I hate to sound preachy, so if I do I am sorry. I just want to make sure that no matter what happens (and trust me, I am counting on this transplant to be a success) I get this idea out into the universe. It's nothing new, but it is one of the most important concepts to me, something I strive for with varying degrees of success, and something I think we all can benefit from. Thanks for listening. I love you guys.

Monday, July 8, 2013

Emerald City of brain organization: 11 days to day 0

When medical events pelt me like sleet, I keep my chin tucked to my chest and try to move on autopilot. I've been in a blogging rut lately, thanks to the madness lately. I have ideas but can't flesh them out or separate them enough to see them clearly. This morning, I will start with an update:

I got the call to come back to Seattle a scant four days before I was supposed to arrive, before my Medicaid was done transferring to my new state of residence, six weeks into living half out of my suitcases and being laid up and feeling rotten. The Medicaid spend-down stunting my active status gave me an extra week of delay, for which I was grateful because I had no way to get everything together in time otherwise. I had another biopsy on Tuesday and an angry migraine Wednesday and after a few days of R&R I feel better. Almost ready to go. This week I will finally get my Hickman line and a few days later I will start my chemo. The transplant is scheduled for the 19th. When I am done in the hospital, I will move into a long-term patient housing apartment with its own kitchen, washer/dryer, actual bedroom, and access to a rooftop healing garden. It'll be August by then and a good time to hang out on the roof, in a chaise lounge with a book, hanging baskets and vine plants for shade.

My eyelids are finally heavy, so I'm going to save this and come back later. I promise.


It is twenty-four hours later, just a little after 12:30 am. The obvious slacking off that has happened here in this blog is due to a number of factors. I have been overwhelmed the the number of administrative, housekeeping, and self health tasks under my responsibility; I have been having vertigo and migraines and random waves of nausea, all of which can be caused- and exacerbated by the stress of being a mostly in-bed patient who suddenly has to turn the slow-moving wheels of her life into speedy little skate wheels; my mind is a dense, wooded landscape in which there are widow maker branches, bitey snakes, tangled underbrush, a cool stream off into the distance where I want to set up camp, and a bit of sun here and there that filters through leaves to make haloes around important-seeming trees. It is hardest of all to talk about my mind forest, to make sense of it all in order to convey to my loved ones that it's not exactly fear that has me quiet, but a lot of thoughts with no real trail. I want to sort it out while I still have a few peaceful-ish days to think it through. There are notions I want to share, part to amuse, and part to try to keep my arrow true enough to compensate for a little shaky aim.

I want to talk to everyone about trying on an attitude of kindness and gratitude. Being more kind, polite, thoughtful. Telling people you notice when they are doing or expressing or anything in a way you like. "Thank you for the tea, Charlotte. I appreciate the way you always make sure there is a saucer down for the tea bag." "I'm glad we had this day together, Bertrand. You are good company and the way you talk makes me think and smile." "Thank you, dog friend, for putting your chin on my lap. You communicate your needs in a way that is both obvious and sincere." "Thank you, me, for tidying up the apartment just because and not because you must hide the shame of your messy ways from your friends." "Child family member, you are doing a great job expressing yourself through your crazy dance. Thank you for being mindful of our faces and privates while you flail about." I am serious about this. It's so easy to look at someone and see what they are doing or how they are being in some fashion that is not our personal ideal. It's even easier to look at a situation we are in or are observing and weave blinders out of the elements that are not readily pleasing, stimulating, or comfortable. Those are the elements that lay groundwork for experiencing joy, satisfaction, and pleasure, none of which make it through the negativity blinders. We don't always know we are doing it, but left unchecked we allow ourselves to miss the ephemeral moments that soften and warm our experience as mortal beings in this hazardous environment we inhabit. I'm just a new thing on the planet at 30-years-old, but life so far has taught me that earnest kindness and gratitude over time enhance our daily experiences and can take the razor-sharp or grit-rough edges we bump into and turn them into discomforts or tolerable pains. I want to talk more about this another time when kava tea and sleepiness aren't here to make me get all Super Granola Lady on you. Another post, maybe tomorrow.


Adam Corolla and Dr. Drew Pinski were a reliable source of even-handed, realistic advice on sex, relationships, dealing with past- or on-going trauma, health concerns, and just about anything else you wanted to know about but weren't sure who to ask. Back in the mid-late 1990's, their radio show guided a lot of youth (and adults!) within syndicated radio range through confusing, embarrassing, scary times and gave us all information our parents and gym-teachers-doubling-as-health-teachers either didn't have or didn't want/know how to share with us. I was glued to my little clock radio from 10pm-midnight, Sundays through Thursdays all the way from eight grad through high school just to listen to Loveline and get the scoop on what was really going on with safe sex. Just by listening to other callers' problems, I learned I should not sleep with the 18-year-old trying to get into my leotard when I was just 14; I should know how to properly put on a condom because a lot of guys my age didn't; neither time I was raped were my fault, no matter how the perpetrators tried to convince me otherwise or how our peers responded by calling me a slut; if the people I date keep treating me poorly, I need to stop and reassess, work on myself a bit, and then date someone less "exciting" and he will probably/hopefully treat me right. All this from a call-in radio show hosted by a fairly juvenile "everyman" and an intelligent, kind, board-certified physician and addiction medicine specialist.

Adam now has his own podcast network, including a show he shares with Dr. Drew to "get the old band back together." Most of the time I love to hear their banter and the way their relationship has evolved, but occasionally it is glaringly obvious that Adam (and to a lesser extent, Drew) has become pretty out-of-touch with the way things really are outside his fancy house in Glendale, CA. I want to talk more about this another time when I am more awake.


One more thing I want to make sure I address is how blessed I am to have amazing people in my life. My family, friends, former bosses and coworkers, even children of acquaintances have been keeping my mind on the stream and the sun and out of the tangles of brambles and brush. But first, sleep.

Tuesday, June 11, 2013

angry, walking idiot

I got really angry at cancer today.

I got desperately, selfishly, childishly angry at my cancer situation today and yesterday and probably a million tiny times over the last six weeks. It's bad enough for it  to lurk in my marrow, threatening all the time to come true, taunting me with fatigue and difficulty healing wounds and a tendency to be flattened by stupid things like the common cold.  By now I have gotten used to the big, scary L looming in the shadows, never letting me fully forget that I could wake up one day feeling extra terrible and find out that my sort-of cancer is now acute myeloid leukemia. I'm not angry about that. I am angry about the bump in the roof of my mouth that keeps getting bigger, that no one seems to take seriously, but that I know is probably a little spot of oral cancer I have been afraid will turn up eventually. I am angry about the vulvar cancer spot that led to a surgery that kicked my ass, mutilated what was left of the terrain down there, and turned up nothing else invasive. I am angry that I am not happier that the surgery didn't turn up one iota more of cancerous tissue. It feels like something I should be happy about, but maybe that comes later. Today I still have kerlix gauze in my underpants. Today I am still on narcotic pain killers that I have to take on a schedule to keep the aching, twisted, tearing pain at bay so I can do things like fix myself breakfast and go to the bathroom. I am angry about being on pain killers. I am angry that I just turned thirty and I feel at once twenty-seven and eighty-five. All the assurances that there are ways to adapt to what is left of my lady parts sound trite and unconvincing. I am angry that I can't tell the difference between medication side effects, stomach flu, and the depression that sets in after weeks upon weeks of being stuck in bed, in pain, trying to explain how scary and disheartening and miserable it is to be cut up in this way to people who have never and will never have to know for themselves. I am angry that when doctors and nurses and family assure me that the suture ridges and scar tissue are a lot better than being dead, I want to tell them to shut the fuck up because how could they even start to understand how it feels? I am angry that I even care.

I took a long walk today, trying to get away from myself. I haven't walked anywhere at all since The Surgery. I have walked to get a cup of coffee this week and walked with R a little ways last night to retrieve our take-out pizza, but it was nothing like my usual walks. Today was maybe more like usual. I walked from the central library back home to my part of downtown, just about a mile. It was humid in a way that made my head buzz and my lungs burn. I kept thinking I was going to faint. I knew when I got home there would be blood all over my gauze, but I just kept going. I even backtracked a few blocks to buy dark brown hair dye at the drug store because I was upset this morning at the pink of my mohawk being faded and flaccid and too much work to keep vibrant. I stood in line, holding on to my hair dye and a cold bottle of water for dear life, as if they would stay fixed and keep me upright if my tunnel vision got any worse. I was stupid and stubborn for going in there, for not going home and just getting water from the tap, waiting until tomorrow or never to buy hair dye. I wish I could say I can't explain what came over me, but I know exactly what it was: petty, angry bull-headedness over cancer dictating every day what I can and cannot do, including simple things like going for a walk. I made it home without incident, greedily sucking down fridge-cold water the last few blocks to my building. I was lucky to have not passed out on the sidewalk, in the drug store, in the elevator up to my floor. I know I was lucky because as soon as I got in I had to pull off my jeans and lay down, sweating and panting and squeezing my eyes shut against the spinning room. That is what anger and restlessness from being in bed for so much of a month can do, if I'm not smart.

There is a chance my transplant-readying process will restart in a month. I need to get a lot of this angry out before that happens or I don't have a very good chance of getting through this minimally-scathed.

Tuesday, May 28, 2013

Evergreen State of self-pity

Surgery this round has kicked my ass.

Good gods I cannot believe how much of me has been removed until I gingerly inspect the highway of sutures left behind and the firm, aching tissue that groans at me like an  infection but thankfully is just hateful fluid build-up. I gained a fever and a MRSA sore on my leg that brought me  back to the hospital for a good four or five days just 36 hours after my initial discharge. I spent Memorial Day Weekend in an inexplicable cold sweat, no fever but a grumpy stomach and a complete inability to sleep. My dear mother had to convince me I was not dying. I know it sounds stupid dramatic, but the drenching sweat, the queasy chemical feeling from my many antibiotics and painkillers, and the insomnia delirium convinced me that my clammy, shaking body would break down any moment.

I feel a bit better this evening; the sweating finally stopped and I managed to get calories down and hydration in. Still, I have been miserable in bed for maybe more than two weeks and I do not hardly recognize myself. My already toneless limbs are shaky and bony, my lungs and heart feel constricted and weak. I see spots when I amble about too long. My eyes are sunken, my face looks waxy and drawn, and even my mohawk looks pale pale and pathetic. My whole body feels ready to collapse in on itself; I'm trapped and mortified at my sobbing alone over the pathetic state I'm in. I feel sorry for myself.

I just want to be okay.

Friday, May 10, 2013

Rose City of love all over everything

I took a week off of life as a patient to visit my hometown. Portland is where I grew up, where I returned, where most of my people are. My fiancé, my brothers, my friends are all here. I want to devour them and take them with me. I hate being so far away from everyone, from real life, from my funny city where people move to dream and try on costumes. It's not that I hate living in Washington with my moms in the country or with Mom in Seattle; I starvingly miss the comfortable back-and-forth and flashes of silliness from my Portland tribe. Everyone I love here is brilliant and lovely. Everyone is warm and interesting. Everyone has their own ways to show love and each of those ways makes me crave everyone's  company and bask in the glow of reciprocal fondness. There are kind people in Seattle. Generous people, considerate people, insightful people. They aren't mine. They don't live in my heart every day, pushing me along with their delight in being alive. I have had a week here and as scared as I was to leave the security of the Seattle hospitals, my heart is breaking to leave again.

There is a store in Portland called Crafty Wonderland. It started as a craft fair in the performance space at Doug Fir and grew into it's own local-made shop downtown. Everything is made by people in my community, and everything is thoughtful and easy to admire. I was walking through today to touch it all, to soak up the Portland essence it holds. I felt tears prick my eyes a few times, wishing I could make this cancer shit just Stop. so I can stay here where much of my love is concentrated.

Here is something amazing coming out of Eugene/Springfield, which is an hour from my home:
"Bald for Bri" is an Indie GoGo fundraiser put on by my sweet friend Hannah. If she raises $1,000 to help me with living-through-cancer expenses, she will shave her head! Please look at this video she made, including that pretty face that is going to be topped with naught but fuzz by the end of the 30 days.

Tuesday, April 23, 2013

Emerald City of Are You Freaking Kidding Me?!: day i don't even...

It is 4:39 and I am spontaneously awake. No amount of ear cuddles from Arthur the red panda who lives on my bed will lull me, so I guess it's time to blog about what I have been too angry to talk about:

I officially have a cancer. Not an almost-type like the kinds I have been fencing for years, but real, invasive vulvar cancer. Thankfully, no leukemia yet. Nonetheless, this could have been avoided if my transplant doc in Oregon hadn't dragged her feet in the muck of pride and politics. It was my feeling way back then that this transplant needed to happen to cut both leukemia and vulvar cancer off at the pass, and that doing it when I was strong and healthy was in my best interest. Referring me didn't happen until more than a year into surgeries meant to ready me for transplants that didn't happen and she took her sweet time writing to Medicaid to approve covering my transplant out-of-state. After all that delay, my HPV had plenty of time to take advantage of my cruddy immune system and invade past the membrane under my dermal tissue in one little spot, shoving me out of transplant status and into Cancer Patient. The painful skin tag that turned out to be invasive tissue has been there since December; a hemorrhaged bit of tissue that grew like an evil mountain from the site of some excised tissue that never healed right after my surgery in November. I am a little angry that the gyn-oncologist who did that surgery looked at that mass that was causing me intense pain and shrugged and said, "everything down there looks the best I have seen it." Thank goodness for a fresh pair of eyes.

Instead of getting a week off to relax at home before heading back to get the remainder of clinic visits and my Hickman line taken care of, I got this garbage news on Friday at 4pm. The darling gynecologist who broke it to me offered me her cell number to call with questions on Saturday, but I could form no questions because my brain was numb with the news and the antibiotics I am taking for my low neutrophil count. Oh yeah, to add something else alarming and awful to the mix, my white blood cell count was 520 at last check (Wednesday) so I am exhausted and tasting a chemical taste all the time and on antibiotics that cause nausea and insomnia. Insomnia! I am on sedatives at night to combat the insomnia I already deal with naturally and now I am on an antibiotic that causes it! What the offing eff. There is a blood draw scheduled for tomorrow, and I want to stick around to find out my counts. I think I can get them during my final team meeting before I am sent off on my ice floe to deal with my cancer for at least two months before I can be the darling girl on Lime Team again. Transplant doc in Oregon would probably say this is good ness because it guarantees two more months of not being dead. She seems to have little understanding of quality of life.

Anyone who called me this weekend got a sobbing, sniffling, panicked account of the lack of details given to me on Friday and some angry, frustrated ramblings about how I was certainly going to die. I heard my mom tell someone on the phone that I was "not dealing with it," which is patently false. No, I was not dealing with drumming up a plan, but I have been doing the only thing I am able in my state of perpetual exhaustion: think and process and breathe. I'm not sure in what manner she expects me to be dealing, but most of what I do is internal, in the engine. There's not a lot of flash or activity on the outside because I can't even stand next to the stove to stir my macaroni noodles without feeling like I'm underwater and made of lead. I am dealing with it. I am doing the only thing I can do, which is let the stages of grief happen and move through them and prepare myself for more intense surgery and the likely loss of my last remaining connection to my sex life and two lymph nodes that may or may not have acquired cancerous cells floating about my blood stream. If you are reading this, please pause a moment and pray to whomever that the cancer has not metastasized. I don't care if you are not prayer-type, I am begging you.      Thank you. I told my dad during an international call he made that I felt like I had been rolling downhill in an old oil drum just to be stopped by someone who dragged me out and punched me twice in the face. I stand by that description. I miss my dad and step-mom. All this crazy news makes me want to pull in all my loved ones as close to me as I can and make them stop their daily lives just to hang out near me. I want all my parents with me at all times, and my brothers and fiancé and friends. I think that is how my 30th birthday will be spent: everyone will come to my mom's and my brother will make ribs and we will all sit on the patio and watch Olive's puppies romp around in the grass.

I have told a number of times that this is just something to get through and not a huge set-back, but I need a little space to breathe on that one. The oblations and excisions scarred and disfigured a lot of landscape in my vulvar region and the vulvectomy only added further insult. The transplant is going to kill my ovaries, and though I didn't plan to use them I like what they do hormonally. I don;t yet know what amount of tissue will be removed along with my lymph nodes, but I do know that with every surgery meant to keep me away from cancer, my body is less whole, less functional, less satisfying. There is a reasonable chance that my thirtieth birthday gift from the medical community will be one more stop-gap against cancer and the total annihilation of my sex life.  I am dealing with it the best I can, in this weakened, pill-filled, longing, corporeal outfit.

Portlanders: I will be in Portland Wednesday because I have a dental appointment on Friday. I can't do much, but anyone who wants to bring soup or a smoothie/milkshake item over and chit-chat is welcome. Just shoot me a text first so I can make sure I am wearing "company coming" pajamas. I love you guys.

Thursday, April 11, 2013

Emerald City of meaty feelings: day Ate

If you want [my address], here [my address] is. Come and get it. You better hurry because [my address is temporary].

 4115 Roosevelt Way NE
Apt 515
Seattle, WA 98105

Now everyone who was thinking of sending me well-wish cards, letters, and so on (thank you so much!) can start sending them directly to me instead of to my apartment back home. I have a break between clinicals today, so I have a bit of a chance to catch up on things I wanted to talk about.

Black Butte Vacation:

Three of my closest lady friends and I took a little trip to Central Oregon. It was relaxing, full of outside fun like strolling across packed-snow trails in the sun along the banks of a beautiful waterfall and river; and row-boating around Clear Lake on water as still and transparent as glass. Central Oregon has non-stop breathtaking views and is thus one of my favorite places to explore and unwind. I had a recharging, restful time with my ladies, L, A, and KK. They are each beautiful, intelligent, and warm-hearted in their own ways and I love spending time with them. I am honored to call each of them my friend. A and KK brought their dogs with them, which of course filled up the pup tank in my heart. There is nothing like dog cuddles and antics for however you are feeling. I want to share some photos of the landscape because it was breathtaking and because I added these images to my bank of happy places to go when I feel awful or am being poked and prodded and cut up.

The McKenzie River is crystal clear and quite chilly. In the spring it is too cold to wade in but when Central Oregon summer gets to 90+ degrees, it is a welcome refresher for those of us in the woods or high desert.

This is how happy snow hikes in the spring make me. I am definitely dancing in my Sanuks here.

The "winter" side of Clear Lake. The whole lake was nearly deserted, making it feel mystical and very much like the setting of an epic quest story.
The lake was so clear you could see at least 30' to the bottom where the sun shone on the water. Here is the shadow of our boat in the "summer" part of the lake.

Hickman Line:
I got to learn more about the Hickman line that will be my long-term port for blood draws, infusions, and anything else that would otherwise require an IV stick in the arm. This is the port through which I will get my IV chemo and my actual transplant. It is inserted through a little incision in my chest and the  tubing is run under my skin up to my collar bone area, where another incision is made to line it up and insert the end into the big vein right above my heart. It will kind of look like a surface piercing under my skin, but instead of a little barbell end I will have a set of two tubes that split off at about navel-length to form a "Y" with color-coded ports on each end. One is "in" and the other is "out," mostly because some of my IV medications can stick to the insides of the tubes and cause misreads of blood draws later on. They will stitch the exit hole closed and stitch to my skin the tabs at the skin opening that look like a butterfly on the tubes to keep it in place. I will be under conscious sedation while this is being installed so I won't be in pain or probably remember much of it, but I will be able to respond to requests from the team when they need me to move or cough or let them know how I am doing. Once it is in, I won't have to be poked any longer, but it will require fastidious care so I don't get a blood infection. It will come with a little lanyard that goes around my neck and clips on to a fabric pouch to prevent injurious tugging.

I have incredible people in my life: family members who are willing to alter their lives for a good part of the year to help me get through this and others who volunteer their weekends or whole weeks to give my mom a break once I am back from the hospital and settled into my routine; friends who offer me comfort, laughs, encouragement, and regular friend-type hangouts and never treat me like a leper or a fragile shut-in; a writers' group I thought would be a nice distraction but turned out to be a beautiful support network of strong, wise women with much life experience to share who never preach or boss me and who have already given me thoughtful treasures (a bracelet I wear every day that reminds me to "be brave," a hand-crafted journal in my favorite bright blue, plush bird totems who sing, a guardian angel disguised as a coin) and have already sent me off with lovely letters and cards and sweet little text messages; doctors, nurses, techs, and administrative staff who not only care about ridding me of this disease and all the maladies it has caused, but also look after my entire well-being from my mental state to my housing issues and everything in-between. I am blessed with a massive network of love and caring and every single act of kindness and support goes into my cup that thankfully just gets bigger and bigger as time goes on. When all this is over, I will have a very big cup of love and good will that I will be able to share with everyone. If I could hug every single person who has helped me emotionally, logistically, physically, or financially, I would gladly spend a week making sure I got to everyone. I could not get through this without you all.

Most of the time, I feel resilient. I feel happy and strong and ready. But there is no surprise that some days I am exhausted or my blood pressure is too low for me to move about without feeling faint. Some days I feel like I am spending too much time mentally tending to the emotions of others and taxing myself too hard to make sure people around me are doing okay. K, my sister-in-law-to-be, sent me a great article from the LA Times about the "rings" of people during a major life event and how which ring you are from the center determines where you seek support and an ear to vent into, and to which direction you lend only support and comfort. Here: The LA Times article for you to read yourself. I have a little problem with being that center dot. It is uncomfortable and defies my identity as someone who supports and encourages and softens worry. I have to learn how to pull in, care for myself, learn how to talk about feeling crappy without feeling guilty and assert myself when people want to dump inward. I was starting to feel confident in my ability to kindly assert my boundaries in that regard, but being tired from long clinic days and opportunistic insomnia makes it hard for me to sit up straight and say, "I love you, but I can't talk to you about your bad feelings right now," or insert situation as applicable. Sometimes when I am too tired or my blood pressure is too low or my pain management is failing me, I grumble and have teary eyes and say "fuck" and "shit" too much and I get impatient with things that aren't going smoothly or restaurant orders that come back wrong repeatedly (you wrote down "GLUTEN FREE BUN" so why do I have to keep sending back this brioche nonsense?!) and I feel like a baby or a bitch and I hate it. I miss being easy-going, affable, confident me. But most days I think I still am.

I am having a little bit of worry about GVHD and my vulvar problems. I am worried about the potential full vulvectomy if my in-situ tissue becomes invasive and malignant. A complete vulvectomy takes away a part of my body I am frankly rather fond of and do not care to lose. I would honestly rather learn to live without a foot or an arm. I know it is not all there is to life or womanhood, but I am going into early menopause after this and already have mangled, unusable lady bits and would like to keep that little cluster of nerves that is the only connection I will have to my sex life. My ovaries are going to be fried, so I may never experience that sexual peak woman are said to reach in their 30's, but I'm not ready to give up on my sex life yet, especially since I am marrying someone I care about very deeply. I'm also worried about my weird finger condyloma in-situ situation, where bad skin is taking over my nail beds and making my fingertips deformed, ugly, and painful to use. Will my new immune system beat it back or will GVHD attack my skin and leave me with unusable fingers? I don't know what I would do if I couldn't have at least one hand with my excellent fine motor skills. I may be a klutz and have hit-or-miss gross motor coordination, but I can stitch and wire wrap and knit lace and untie giant, tangled knots with no problem.

Living in the U District of Seattle is pretty cool for the time that I am able to actually enjoy it. Mom and I found a great Indian joint among the twenty little pocket restaurants and thrift/"recycled fashion" shops. Our tikka masala was so delicious I ordered palak paneer to take home. I am eating it for lunch as I type this. We also discovered the best Goodwill I have ever seen and I picked up a bright orange sweatshirt/jacket for $4 because I was having low blood pressure chills and because it reminded me of my orange-loving nephew who is one of my all-time favorite humans. Despite my adoration of the neighborhood, I am fairly homesick. I miss the perfect mattress Mom and B got me a few years ago for Christmas, and I miss the giant down comforter from Dad and J. I miss my brothers and their ladies and I really miss my nephew and our weekly hangouts while his parents go to important appointments of their own.  His parents talk about moving away from Portland to go somewhere warmer with more jobs and I try to be okay with that idea, but being this far away only temporarily already hurts my heart. He is an amazing kid and my little buddy and I love being in his life as he grows up. Nephew is bright and fun and loves to dance. He is incredibly kind-hearted and announces his love for his friends and close family totally out of the blue, just because it popped into his head how he feels about them. "I will never take my love from ____," he says, a total non-sequetor, "no one could ever make me stop loving my friends. Or you, Aunt BeBe! I love you. And Mom and Dad! You are all my important people and I would never take my love away! And you, you have important people. Who are they? I know it's me. But you and R__ aren't married yet, right? So he can be number two and I can still be number one. And then your mom and dad. And who else? Your brothers, I guess. It's important to give them your love!" Amazing. How can I be so far away from such a wonderful little guy?

Housing payment is still up in the air. DHS in Oregon will pay $40/day but that still leaves $600/month to pay for our teeny one-bedroom where my mom sleeps on a hide-a-bed. If we want to stay in a two-bedroom with space for people to visit, it is an extra $1,200/month. I am digging around to find additional grant money, and will likely qualify for $1,500 simply for having a transplant. There is also housing assistance available through SCCA, though it is uncertain yet what that would cover. I have a lapse in my SSD right now, thanks to a scheduling error, but when it starts again next month I will be splitting that small check between the household finances back in Portland and my living expenses here. My fabulous social worker here pointed me to "Help Hope Live," which is an organization that helps people fundraise for expenses related to transplants and catastrophic injuries. I am working on getting set up with them because they fund match at certain fundraising benchmarks and help with getting the word out and sending tax deduction forms to people who donate. Speaking of, the donations that trickle in every few days have been a huge help (for example, you guys helped my mom and I have a tasty Indian dinner after a very long day when we were both too tired to cook and needed something more than the snack and breakfast foods in the apartment) and should they continue, will help close the gap with our housing, food, and transportation costs. R is taking care of all the bills and expenses back home, but without me working we have to dip into savings once in a while to keep everything up-to-date. Every cent people contribute goes into a general fund and is received with a heart full of gratitude.  I will get a hold of tax deduction forms for anyone who already donated and wants one once I get set up with HHL, just e-mail or Facebook message me.

I had a gyno-oncology appointment this morning and they want to do a biopsy of some questionable tissue surrounding a recent excision, which will be performed under general anesthesia on Tuesday. The other morning appointment was a MUGA exam, where blood was drawn, tagged with radiation and returned to me; the imaging device used that radiation to monitor blood flow in and out of my heart. All I had to do was lay there for twenty minutes while a giant square hovered above me, and then they let me see moving images of my heart pumping! It was amazing. I love science. Now I need to put my shoes back on so I can return to the clinic for my class on how to use the medication and hydration pump for my Hickman line. See you later!

Tuesday, April 9, 2013

Emerald City of poor internet access: day 7

Mom and I moved into our temporary permanent apartment today. It is in the building where we will stay for the duration, but we are in a small, single bedroom unit until a large, two-bedroom apartment becomes available at the end of the month. It is clean and convenient, if a bit worn down. The people who run the building are very nice and the building is in the U district so I imagine the overall experience here will be a good one. Mom and I already discovered a good Indian restaurant and a frozen yogurt spot that serves avocado-coconut frozen yogurt, mochi bits as toppings, and a staggering variety of boba tea combinations. I am not a big "fro yo" fan, but the avocado-coconut flavor is outstanding, especially accompanied by multi-colored mochi sprinkles. Granted, I won't be getting out much post-transplant, but there is enough time between now and then for me to wander the U district that I can kind of pretend I am on vacation in Seattle while inhaling the perfume of a couple dozen tiny Asian, Greek, and "etcetera" restaurants that stretch along Roosevelt around 45th Street. I feel bad for being so dismissive about Seattle all these years. If I had spent time with people who did anything outside downtown or their own living rooms, I might not have been so bored with the city. I found a pocket that speaks my language and today I am in love.

Most of today has been about not passing out or only passing out in appropriate settings like in bed. I am exhausted from all the procedures, exams, and meetings and I have not been sleeping well. I have the insomnia problem that has cursed me since puberty, but my pain medicines and homesickness don't help that at all. I miss my brothers and nearly-sisters-in-law and (maybe especially) my nephew. I miss my lovely friends and the wise women o my writers group. I miss my perfect mattress and fluffy, down comforter. I also miss my high-speed wifi, since there is a noticeable shortage of such in both short-term and long-term housing. At short-term, there was wifi, but it was so slow I couldn't load my Blogger dashboard in any time under ten minutes, let alone wait out an insomnia issue with some Hulu time. Here, there is a cable modem in the living room but no router so I have to plug into an Ethernet cable that doesn't reach the bedroom. I'm currently blogging from my phone. It is hard to type fast enough to keep up with my brain. Anyhow, I have been too exhausted to function most of the day and have been kind of a wreck both physically and emotionally as a result. Hence the Indian food and frozen yogurt; sometimes the best cure for feeling miserable is a plate of chicken tikka masala and something to cool off the stomach after.

I promise some good writing soon. Tomorrow maybe I will suck it up and plug in and write from the living room.

Monday, April 8, 2013

Emerald City list of BMT prep minutia: day 6

Here are the things of note that happened today:

1) I woke up from a night of sleeping in 2-hour rounds and really could not function until 1pm, when I realized I needed to leave for the clinic in thirty minutes and had completely missed my morning and noon doses of pain killers.

2) I spent at least an hour in crazy pain, some of which time I pitifully cried in the bathroom because using the toilet was both too painful to handle and a little scary thanks to the withdrawal spins.

3) I met my team pharmacist who is very sweet and knowledgable and let me ask a million questions about chemistry. Bear in mind, I love science but haven't actually taken much chemistry. I learned I will be taking something like ten or twelve pills a day for a while before and after my transplant.

4) I met with the nurse for my team who fills in on my regular nurse's day off. She very sweetly answered my incessant questions about the Hickman line, even though that wasn't necessarily the point of our meeting. The Hickman line is interesting and unsettling, but I at least feel a little less unnerved about the whole situation. Give me the science or factual explanation over platitudes any day. I will share this new knowledge later, when I can type two-handed. Yes, my other hand is occupied right now. Don't be gross, certain friends who know who you are.

5) Mom and I went to the bead store for findings so I can start to make little "thank you" items for all the folks who have been helping us pay for gas, groceries, parking (why is parking so crazy expensive in Seattle? They do not use that money to fill in potholes in the side streets.), prescription co-pays, and such. Every day there is a new e-mail telling me a friend has quietly added to the fund, and every day I cry happy little tears of gratitude to myself that I am blessed with such gracious, generous friends. I cannot wait to hug you all and somehow pay this kindness forward. I am blessed, truly.

6) We ate rice bowls with Yumm sauce. If you do not know what Yumm sauce is, go to Eugene and eat at Cafe Yumm. Or come here and have some that my mom makes. It is fantastic and healthy and makes you feel powerful and full.

7) I found out B and R are coming up to visit on Saturday so Mom and I can get some time in with our partners but still have Sunday to rest up for the coming week. I am excited to see them both.

8) I also found out people have sent cards to my apartment! It sounds like they have mostly come from the women in my writer's group, who I will miss very much tomorrow from 10-12:00.

9) I decided to cut my hair even closer to the intended pixie cut after my bath ritual and nearly cut my dang ear off. That was twenty minutes ago, and I just now got the bleeding under control. I feel like a low platelet idiot. I am typing with one hand and holding a giant wad of tissues to my pitiful ear with the other, since it took no time to bleed right through the bandage.

10) Someone asked me to add my donate button to a newer post, so I did that now:

11) I went to bed and tried not to smudge blood around on the white linens.

Saturday, April 6, 2013

Evergreen State medical vacation: day 4

I skipped updating yesterday because I decided to go home with my mom for the weekend. She took T and R back down to Castle Rock to pick up our car and drive back home until transplant time. I had planned to enjoy some alone time to explore Seattle, but at the last minute decided I was better off resting my hole-punched hip in the woodlands where Mom lives. It was a good decision. I got to visit with B, my maternal step-mom (my mom's partner) and hang out on a comfortable couch with dogs on my lap. Sleep is better here, since the only sounds outside are rain, wind, and the creek that meanders through the property; the short-term room in Seattle overlooks noisy construction. I absolutely needed this. My first half-week was a dress rehearsal, and an exhausting one at that. Having a rejuvenating weekend at my second home has me mostly ready for the real show and I relay that because I'm not going to get another chance to just do normal life things at home for a while.

I had a pulmonary test, blood draw, and bone marrow biopsy on Friday. I am tired right now but tomorrow I will write more on them. The pulmonary test and biopsy are pretty good stories. Tomorrow is another day of rest so Mom and I are headed up to Poulsbo to visit my cousin and then we will stop by the home of family friends nearby before taking the ferry back to Seattle. Monday starts the next series of appointments and should also be the day I am assigned an apartment at Transplant House. Cross your fingers.

Thanks to the folks who have made donations of various sizes to my "staying afloat" fund; you are angels and every little bit helps ease the worries that distract from focusing our energy on the healing and wellness side of things.

Thursday, April 4, 2013

Emerald City bone marrow rodeo: day 2

First, I want to thank those who have donated to my BMT-sans-bankrupcy cause already. You guys have helped us pay for parking and gas already, which is a huge help. None too soon, I might add. I found out today that the month of April is a gap month for my disability check, so I won't get my next one until May. This makes me unable to contribute to the household bills back in Portland, which don't stop barreling toward us while I am up here no matter how hard I squeeze my eyes shut and make wishes. I was choked up when I saw today that people had already responded to my mewls while the presses were still hot. Thank you for your generosity, friends. Your kindness blows me away.

Today was much easier than yesterday. I had a chest X-ray and an EKG, a meeting with my social worker, another with my nutritionist, and one with the head doctor for Team Lime. I also met with people from Financial Services and Housing who are sorting out the particulars of my housing situation, particularly how it will be paid for. It sounds like there are funds available that might cover half the cost of my room, but the leftover fees will still be more than my apartment in Portland. Eep! Here's to hoping we can find grants or charity that can help decrease my contribution by 75% of the room total. Even with that cost looming, I was more relaxed today than yesterday. I didn't have to get up at 7am or ride in traffic for three hours, I knew I had a place to rest when all my appointments were done, and I didn't have a single exam where I had to get naked. T bought us all an amazing sushi dinner, too! The salmon belly was exquisite and the perfect last sushi before I have to refrain from sweet, sweet raw fish. Speaking of my dietary restrictions, I was happy to learn I can still eat raw fruits and vegetables so long as they are washed thoroughly. It is not recommended I drink Ensure, but I am absolutely allowed to have smoothies with yogurt so I don't have to worry about those days when I'm too tired to eat.

The Hutch is a lovely place to have cancer treatment. The waiting areas mostly look out over the water and on clear days you can see a stretch of mountain range in the distance. Everyone is very friendly and obviously understands how daunting this whole process is. I have a bone marrow biopsy tomorrow afternoon and I'm confident it will be a less traumatic experience than biopsy number three when I was held down while an impatient PA drilled a hole in my hip.

Good night.

Wednesday, April 3, 2013

Emerald City of marrow, day one complete.

Here I am in Seattle, nestled into temporary patient housing while I wait for a spot in the long-term building. It is the difference between a nice, sterile hotel room and a nice, sterile one-bedroom apartment. I'm looking forward to having a proper kitchen en suite; cooking (so long as I have energy and am not nauseated) is stress-reducing for me. Still, this certainly beats the Ramada down the street given the DVD library, high level of hygiene, and the overall comfort.

Today was a challenge. We came up from Mom's place in Castle Rock in the morning and got started immediately upon arrival. Blood draws, exams, interviews, waiting rooms, and working out my still-unsorted housing/Medicaid situation. My painkillers had a hard time keeping up and by about 5:30 it was clear I was well past my threshold for activity. The emotional roller coaster I have been riding for the last eighteen months ramped up today, pitching me into waves of fear, excitement, relief, frustration, and anxiety. It's almost ten o'clock and I should be trying to sleep, but I have been in bed for hours just enjoying the evening with my brother-doner (as the hospital folks call T) and my lovely fiancé in front of the TV. It has been the most normal, relaxing thing I could ask for right now.

I have so much to say right now, but lack the energy needed to do so. I have a break from the madness this weekend, including a stretch on my own while Mom returns R and T to the Portland area and gets her long-term stay bag together. I will use some of that time to park myself in a cafe somewhere to write and knit and get a cappuccino in me. Expect a good few updates to come out of that time.

Until then, I have to humble myself a bit and post a link to my Paypal account, just in case anyone wants to help my family and I stay afloat. Living temporarily in Seattle is going to be an expensive endeavor, even if I can get assistance for most of my housing costs. Administrative fees, parking, gas, food, incidentals, and yet unaccounted-for expenses are already starting to accumulate and are going to stretch us very, very thin. I certainly don't expect anyone to donate to the cause, but I have had a few people ask if they could and I think the best way for me to accept that help is to just slap a "donate" button on a few blog posts. In the event there are leftover funds once all bills and fees are settled, they will go toward our modest wedding next year and/or updating the barely-working video game system for the pediatric patients/children of patients in the transplant clinic waiting room.

If you'd like to help but don't feel financial assistance is appropriate for you (which my family and I totally understand, not being particularly flush ourselves), my spirits will be certainly lifted by postcards, letters, and the like. I don't have an address here yet, but you can send them to my apartment in Portland or give them to R to bring to me. Please message either of us via email, text, or Facebook for that address.

Time to sleep. I love you all.

Friday, March 8, 2013

tuck and roll

My arrival date in Seattle is April 3rd. I have known about it for about a week now, but like a lot of other important bits of information and transitional milestones in my life it has taken me a little while to process the reality of the situation. I am hardly a knee-jerk reactor. There was a time when I worried if I had any feelings at all, but I have since realized I am a low simmer and not a rolling boil. Unless, of course, substantial heat is applied and then everything in my path gets a good scald. Someone in my past accused me once of not facing things, not dealing with my problems head-on because I don't like to talk about my life issues immediately as they are happening. I guess some people just don't value a good mull. I like to examine a situation from all angles before I decide how I really feel about it. That might take a few minutes or a few weeks. My mom came out to the family when I was 12 and I held a neutral opinion of her lesbian leanings until I was a sophomore in high school. (The opinion I landed on was that I had very little interest in whether my mother was attracted to men or women, but held a strong interest in whether or not the people she dated or was partnered with were kind, honest, and treated all of us with respect.) So you see, it has taken me a week to ponder the reality of my bone marrow transplant enough to really talk about it.

I am certainly frightened. There is nothing appealing about the process of having my marrow stripped from my bones and waiting out the battle between the new marrow and my body while the marrow figures out it is in a new home that needs its attention. The mortality component doesn't help, nor does the temporary increased risk of vulvar cancer. Without the transplant, vulvar cancer and leukemia are both eventual inevitabilities so the choice is to tuck-and-roll or stay in the car while it crashes at 70mph into a concrete wall. I have always been good at the tuck-and-roll. When I was 17, I jumped on the back of a friend's slow-moving station wagon and had to leap off and roll when she started to speed up. My awesome tuck kept my ice cream cone perfectly intact. The same happened at 23 when my skateboard hit a crack in the street and bucked me forward, and despite a sloppy, ass-over-tea kettle roll I hopped to my feet at the end with nary a scratch and my lit cigarette still in fine shape. I know a little bit about not completely eating shit. This skill or instinct will surely help me get through four months of awful.

The coordinator called yesterday to give me an overview of what to expect. I will have about two weeks or so of exams, meetings, and preparatory appointments before they even start the conditioning process. I will have to see a dentist, take classes with my caregivers, meet with a nutritionist, have a pelvic exam, and have a central line installed. Tubes going into my heart and sticking out my chest may currently outrank death in things that give me the willies. This is subject to change, but today it is grossing me out. After all that business is squared away, I will have my week of conditioning where I will be poisoned and irradiated to eliminate my bone marrow. T will have had two weeks off at this time, but will come back towards the end to have his stem cells tapped. Then the transfusion, and then 2-4 weeks in the hospital. It turns out that I won't be in full-on isolation unless there is some sort of complication. Once I can walk around and eat and drink on my own I will be released to patient housing where I will stay for the duration of my remaining 3 months of observation and treatment. If things pretty much move along this schedule I could be home by August, my favorite month in Portland. I could even be home in time to adjust to being out of the hospital setting, get some strength in my muscles, and attend the wedding of one of my most favorite people and his sweetheart.

That reminds me... I want to make a blog post about love and community and I am making a note here so I don't forget.

The ball is rolling fast now, and I am excited to get this whole miserable process underway. I'm terrified and grumpy about what it entails, but if I can be getting ready to surf and camp all summer by this time next year then I'm glad to get it over with. They say it will take a year before I really start to feel Better, but I'm awesome so I will try to make it happen in nine or ten months. I want to start my surf conditioning by March. If I can make requests of people, two of them are: please send me letters and postcards; and please tag me in all your fun, awe-inspiring, exciting, and/or peaceful photos from your outdoor adventures this year on Facebook so when I log on I can go right to them and pretend I am there. Thank you.

When I get scared, I think about this song (somebody's dog footage is just a bonus):

Tuesday, February 26, 2013

from writers' group 2/26/13

 I have decided to live. I have decided to live over and over since I was just a little thing, sick with everything and missing a total of two years of school. I have decided to live when chicken pox tried to take me down and the battle raged for months. A mysterious illness socked me in bed for three months of my fourteenth year, kept me from eating, drinking, walking, waking. I took my fluids through an IV. My big brother watched me try to lift my head and I saw his eyes well up like he was afraid I wouldn't make it to fifteen. But I did. I decided to live. I could have let go and slip comfortably into sleep forever, but what a ridiculous option. I decided to live.

 Every major illness and injury has tried to steal my breath and my blood, but I refuse to be compromised. Massive blood loss post-surgery couldn't take me down. Bacteria pneumonia turned me purple but I wouldn't be bested. All these scrimmages have just been practice for the big show. I'm a feather-weight prize fighter; I've got a flawless bout record. It's all led up to the championship match: me vs. my failing bone marrow and let me tell you there is no other outcome than my absolute victory because

I have decided to live.

Friday, February 15, 2013

things are happening.

My transplant doctor has faxed Medicaid a letter recommending I be treated in Seattle. This is a necessary step for me to have my coverage moved temporarily while I am being seen at the Hutch. This is (big picture) a good thing. Let's take a moment to celebrate a burst of activity in the process.

There's a funny scene on Parks and Recreation in the second-season episode where Ann (Rashida Jones) throws a Halloween party that starts out pathetically boring. Tom (Aziz Ansari) sees all the low-key guests glumly milling about the kitchen and tells Ann "they all look like someone just told them they have to have a bone marrow transplant!" The humor is in the truth. I'm pleased to have some momentum building because the stagnation and endless surgeries and acid burnings and laser oblations are making me feel a little unhinged. I am not pleased that this momentum is building to a crescendo of pain, hair loss, general horrible feeling, and potential fatality. I don't handle this internal conflict well, except to partially compartmentalize both feelings enough to let the happy one out in most company.

I found out all-around good news, though. Don't let my earlier ennui fool you. I had some genetic testing done to determine if my chromosomal abnormalities are hereditary or acquired and they are not hereditary. Wonderful! This means my liver and lungs should not be at a higher risk of GVH issues or tumors later. More importantly, it means T is not likely to have the genetic problem and does not have to screen for liver- and lung cancers once a year and can be my donor. I don't want anyone else's marrow but T's. It just seems right.

R and I signed our Advanced Directive documents this week, making us each other's advocates when the other is incapacitated. It's like being almost married. Like my almost cancer, but awesome. It was necessary to do because the transplant is actually coming into view, but it feels surprisingly lovely to have made that commitment to one-another.

sometimes life is difficult.

I have been living shoulder-deep in mud in for over a year. Most of the time it is cool, just a hair less than room temperature and I slog about and accomplish small, dull victories. I pat myself on the back when I get up, put on a cute outfit and walk five blocks to knit and drink coffee. I lap up my own applause when I clean a room of the apartment, write for an hour, and run an errand all in one day. There are a lot of days where the pain is pushing too far past the medication or I can't seem to wake up enough to move until almost noon so I can't get out of bed at a reasonable time, but what is there to get up for, really? The weight of being in limbo and the shattering of my illusion that limbo would last are dragging me down. 

The depression that settles in when you have become mostly homebound by illness is like a fine dust that coats every square inch of everything around you. When the only treatment could kill you and is a mirage you can swear is getting closer, it is a grease mist that settles onto the dust and makes all of life grimy. This is especially true when you are alone all day. I try to reach out and make the social time happen, but it's hard through the grime and the tired and the "breakthrough pain" and the waking up sometimes and feeling like the whole corporeal consciousness thing is a stupid waste on this sort of existence. It's hard to want it. The not wanting the social time sucks because it's about being depressed, being scared, and not wanting to have to worry if I don't feel much like talking; it has nothing to do with wanting to connect. That's all I want. I don't know how to get it through all the grime except to force myself up and out to fill my time with more than doctors' appointments and errands. But it's hard to talk about being angry and scared at the same time except to say it's like a high-pressure front and a low-pressure front settling down in disputed territory. As each system approaches, the drizzle turns to endless-seeming rain that keeps you from going out without galoshes until they overlap and I'm downstairs to get a midnight piece of jerky and suddenly hucking things around the kitchen and sitting on the floor slamming myself into the wall. That specific event only happened once but it was recent and scary so I'm going to individual counseling.