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!

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