Sunday, October 18, 2015

Stage 4 Cancer: my human body project/the Human Body Project

In my last blog post I was very ill. I had to cancel my show at the Victoria Fringe and put Vulnerability Vigils on hold.

It turns out I have Stage 4 gynecological cancer. This is not a great cancer to have. Prognosis is 30-50% alive in 5 years. I do plan to be in this number, however.

I have a large cancerous mass growing in what doctors assume is my ovary, but they're actually not certain. This kind of cancer is an "invisible cancer," one that escapes detection until the person is ill. Mine was found because my GP ordered an ultrasound after I showed up so sick in her office.

I was in hospital from August 27 until September 25. My first couple of weeks were traumatic. I was extremely ill with fluids accumulating in my chest and abdomen and I had a parasite on top of this. I dealt with extreme, unceasing nausea. I was so ill, I couldn't stand to be touched except handholding. I was so ill, I could see it in the terrified looks on my family's and friends' faces. I was so ill, I said to my husband: "I can't even miss you guys."

My situation was one they call "complicated," without protocols. I could see my very competent, very kind doctor wrestling with how to handle me medically. I am extremely grateful to him and to all the incredibly dedicated caregivers in Women's Health at Victoria General Hospital. I have such faith now in this doctor, who will be part of my surgical team to get my mass removed, because I feel he made really difficult but the best decisions while caring for me during this time.

After "getting stabilized," I was transferred to Royal Jubilee's oncology floor to begin treatments for the cancer. It took two more weeks for me to be well enough to leave hospital. Again, the care I received was, on the whole, stellar. 

I am beyond grateful to our health care system.

It's difficult to recall details. I have been on a "dose-dense" chemotherapy program. I definitely have the side effect of "chemo brain," e.g., very fuzzy-headed, slower reaction time, can't get jokes! And, because of drugs and discomfort, I have also been very sleep-deprived.

I needed people to wipe my bum. I had two blood transfusions (thank you thank you blood donors). I have had about 15 thoracenteses/paracenteses. These are scary. Fluid that would kill me accumulates in my chest and abdomen. It was the fluid accumulating (and the blessed but sickening parasite) that alerted me to the cancer. To get rid of the fluid is pretty intense. I am "stabbed" and a straw is inserted into the space in my body where the fluid is. Then a a line to a bag is attached and I drain. The last two times this happened (it continues since I've been out of hospital) more than 2 litres of fluid came out each time. Ew!!

I shaved my head to pre-empt chemo shedding.
These last two times came from my chest, which is a more dangerous place to poke (lungs and all nearby!) but the radiology doctors have been as kind and competent as almost everyone I've encountered in the health care system. Only once in these times the straw must have twisted and didn't drain. A repoke was required.

These poke'n'drains are one of the most difficult things for me. But they have also saved my life several times over. I have one scheduled (thoracentesis=chest) tomorrow. Ugh.

I also struggle with bloodwork pokes (usually only once a week now but at least once a day in hospital) and my IV being put in for chemotherapy (once a week). I really struggle with pokes. For the thoracentesis or paracentesis, I use pain and anxiety drugs. For blood and IV, I have gotten pretty good at knowing what works and giving instructions but it's still a source of pain and anxiety.

My chemotherapy side effects include neuropathy (numbness and discomfort in hands and feet), the fuzzy brain, joint aches, and severe energy dips.

At this point I can't drive; I can't prepare for a class I was going to teach so had to let it go; I can't really do much around the house; I'm only able to read in brief bursts; I can sometimes take short walks. I need a lot of quiet, solitude and rest. I am VERY LUCKY that I have the support that I am able to do this.

This is the first time I've been on the computer since I got ill. I have been sharing on Twitter (@HumanBodyProj) and Facebook (on my personal and Human Body Project page). But I felt unable, until today, to go beyond short posts and my iPhone.

I am also VERY LUCKY that I do not experience nausea. In fact, I have an excellent appetite and any of you supporters out there who want to donate food, I encourage you to do so!! Anything! Variety is a gift!

Hmm. This ended up being a post about the more physical details.

Spiritually, I have been deeply blessed by this cancer. I've written about his in my posts on Twitter and Facebook. Adrian Chamberlain wrote a piece about me in the Victoria Times Colonist. 

Loneliness and depression is something that was such a deep and painful part of my pre-cancer life. Doing the Human Body Project in the way I was holding that super-serious piece has been a burden and also separated me. Somehow through this transformative cancer I have been able to receive love in ways I was unable to before. 

The Human Body Project is this!! Cancer is part of my human body project/the Human Body Project. 

The Human Body Project has always been about two main things:
1) me working with my disconnection... from self, community, love...
2) how my process intersects with "the culture" or, maybe a better word is "the community"

How has this particular part of HBP process intersected with "the culture"/"the community"? It's brought out an outpouring of love from everyone around me. Just an outpouring. That love, yes, it's "inspired" by my process. But it's not "zero-sum," i.e., the love is not just "for" me but envelops, feeds, gives to all who feel it.

I'm not sure what the Human Body Project as performance and activism will look like when I'm better, but I'm definitely going to have more fun. Part of what I've let go is my need to hold such seriousness alone.

Love, Tasha

ps Some kind people have put together a fundraising effort for my family and I:

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