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.

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.

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.

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.

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.

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):

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.