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.
Tuesday, May 28, 2013
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.
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.
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.
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.
Friends:
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.
Feeeeeelings:
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?
Finances:
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.
Today:
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!
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.
Friends:
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.
Feeeeeelings:
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?
Finances:
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.
Today:
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.
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.
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.
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.
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