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.