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| Ed understands my excitement |
Monday, January 27, 2014
surfing birthday
I'm going to Hawai'i! I will be attending Camp Koru in May for surf & paddle board camp with other cancer survivors. Camp takes place over my 31st birthday. What an excellent birthday present!
Today is day 192
My memory is still damaged from the BMT. It doesn't help that I spent two years on a variety of strong medication to keep my chronic pain under control. I can't remember a lot of details from things I have read or seen in the last few years, and sometimes things I do remember get a little scrambled when I try to recall them. Trying to have pop culture conversations can be a little embarrassing, though I get the benefit of re-experiencing a story with a fresh mind if I want to come back to something I know I enjoyed but remember foggily.
I am trying to learn javascript, and it is making me crazy. I refreshed my HTML and CSS knowledge without much effort, but learning a new language is harder than I expected. I've been splitting my learning between Code Academy (which has a handy experiential tutorial, but is sometimes buggy) and w3schools.com (which is information-rich, sometimes to a fault for a beginner), so I have everything I need to know at my fingertips. Still, I have a lot of moments of staring dumbly at my screen while I try to remember something I learned five minutes ago. This is tough. I am used to learning everything quickly, processing new information easily, rarely slowing down. What gives me hope, though, is that my brain seems to function a little better every day.
Exercise seems to help. The more I can get moving, the sharper I feel. I guess that should be obvious, what with improved circulation and all the science behind exercise and improved mood and mental faculties, but I tell you I am living it. Usually, I do 30 minutes of recumbent bike and 15-20 minutes of strength-building like resistance bands. I just got into this "30 Day Shred" video series put out by Jillian Michaels, which is maybe a little more intensity than I need but it burns soooo good. I made it all the way through for the first time last night and today I am still feeling a little wimpy. I was nervous to walk down the stairs this morning! I'm not an idiot, though, so today I am taking it easy, doing a little flow yoga, and enjoying my day. I also took a break from javascript and am having a little "weekend" kind of day. I have to remind myself that if something is wearing me out or making me feel nuts, I need to take a break and shift gears so I don't burn myself out.
I am trying to learn javascript, and it is making me crazy. I refreshed my HTML and CSS knowledge without much effort, but learning a new language is harder than I expected. I've been splitting my learning between Code Academy (which has a handy experiential tutorial, but is sometimes buggy) and w3schools.com (which is information-rich, sometimes to a fault for a beginner), so I have everything I need to know at my fingertips. Still, I have a lot of moments of staring dumbly at my screen while I try to remember something I learned five minutes ago. This is tough. I am used to learning everything quickly, processing new information easily, rarely slowing down. What gives me hope, though, is that my brain seems to function a little better every day.
Exercise seems to help. The more I can get moving, the sharper I feel. I guess that should be obvious, what with improved circulation and all the science behind exercise and improved mood and mental faculties, but I tell you I am living it. Usually, I do 30 minutes of recumbent bike and 15-20 minutes of strength-building like resistance bands. I just got into this "30 Day Shred" video series put out by Jillian Michaels, which is maybe a little more intensity than I need but it burns soooo good. I made it all the way through for the first time last night and today I am still feeling a little wimpy. I was nervous to walk down the stairs this morning! I'm not an idiot, though, so today I am taking it easy, doing a little flow yoga, and enjoying my day. I also took a break from javascript and am having a little "weekend" kind of day. I have to remind myself that if something is wearing me out or making me feel nuts, I need to take a break and shift gears so I don't burn myself out.
Saturday, January 4, 2014
go, lil' immune system!
I had a gyn/onc check-up yesterday and the doc said shit looks awesome down there. My immune system is kicking the HPV's ass. That's right, the devil virus is getting beaten down and I am DESTROYING IT WITH MY OWN CELLS. Fuck to the yes.
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.
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.
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*
Combine:
- 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.
Preheat oven to 350*
Combine:
- 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!
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!
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