Wednesday, January 10, 2018

Day 41


“When unique voices are united in a common cause, they make history.”
Gloria Steinem

There is a cheerful lightness to the #savethetatas movement, which since 2004 is responsible for over a million dollars in donations toward breast cancer research and awareness. It is upon their shoulders I make this cry, which is decidedly not #fucksavethetatas.

If what you want to say is “I saved my life, not my breasts,” then a new battle cry is warranted. A stellar community in this new wave of women facing breast cancer started #flattopperpride for those opting out of reconstruction. I’m finding in this vast cancer community, it is essential to pick a lane, a people with whom to commune and commiserate.

In my case, there was no question. I had malignancies in only one breast but something in me wanted decisively to be rid of them both. My surgeon, a hero among men, was prepared to persuade me into a bilateral mastectomy (aka. both tits off), but I let him know to keep his spiel. I was prepared to have them both removed.

As it turns out, the genetic testing we did that first day confirmed this decision.

Pronounced Bra-kah 

Simply stated, this genetic mutation makes me more susceptible to various forms of cancer: ovarian, pancreatic, melanoma and as for breast cancer... there was an 80% chance of me getting breast cancer in my lifetime. 40% before 40.

It’s hard to know how to feel about this data. On the one hand, it offers a stark picture of my biological inheritance and possibilities of recurrence and metastasis. On the other hand, it’s data! A luxury many with cancer are not afforded.

With cancer, behind every new space unveiled is another curtain closed. Or to alter the idiom: where one door opens another closes behind it. To know takes courage. Not knowing takes courage.

So, surgery. Such a success! Scars clean. Cancer removed. Lymphatic and Nerve System preserved decreasing my chances of lymphadema thanks to a new contrast dye method that illuminates healthy nodes. AND given the preservation of these nodes, which would have ultimately come out if not for the brand spanking new method, my cancer staging dropped from Stage 3 to Stage 2b!

I know I’m being rather Pollyanna about this horrid amputation. There are some things we can do better. First, the tubes. The goddamn tubes.

Given the shock of lymphatic dissection and extraction to the system, the body needs to drain fluids (the lymph’s primary function). To prevent swelling and a whole slew of other complications, tubes the size of McDonald’s straws are inserted under each arm and coiled on top of the chest wall. They empty into rubber teardrop containers that must be emptied regularly.

My surgeon confirmed that this draining method has not been improved in his 30 years of breast surgery and it certainly feels that way. The tubes must go. It’s time the med tech engineering community is tasked with a more advanced suction method, tube placement, whatever. Do fucking better.

Also, the morning after surgery in the hospital, I started having spasms and cramps in my chest. When I reported this to one of the nurses during my next round of Oxy-Codone, she knew precisely what I was referring to and recommended a muscle relaxer for the pain, Robaxin. What would we do without nurses? Nonetheless, I let my surgeon know (after I berated the tube system) that the muscle relaxers should be a standing order for post-op.

Then I challenged his use of Oxy. Opiates are shit. It took more energy to overcome the side effects of Oxy than anything else. Congrats on legalizing cannabis WA State. It’s time to tell the medical community that recovery is spelled cannabanoid not opiode.

What’s next? 8 infusions of chemo over 4 months. 4 hours every other week beginning around mid-Feb. No firm dates just yet.

Many have asked, if they got the cancer surgically, why chemo? Great question.

Let’s call cancer the cantankerous plastic in the ocean. Removing plastic debris is step one. However, plastic being an insidious substance requires more precision to exterminate. Hence, chemotherapy. At the cellular level, ocean water has mutated alongside its pollutant. What can be seen with the eye is not a complete picture of the disease. It is but the obvious manifestation of a pervasive problem.

Chemotherapy addresses the mitochondrial effect of malignancy and prevents the gestational habitat of cancer cell production. As it happens, what little we know of cancer cell production includes the reality that (like hair growth, gut function, and vaginal moisture) cancer cells grow rapidly. Entonces, chemo halts rapid cell growth. Losses are certain. And unfortunate.

Next. Radiation. Radioactive heat lasers targeting the perimeter of my infected flesh. This process is tantamount to cleansing the ocean to promote healthy cell growth after we’ve torched the sea. It is essentially cauterizing a wound to encourage the healthy reproduction of life in the wake of a halt to all growth. If there’s one thing we know, life will out.

The ontological community is tasked with shaping that life with as little cancer fertility as possible without destroying the fertile self altogether. Tricky shit.

That just about brings us put to date. Except to say this.

Trauma and I go way back. Here’s what I’ve learned in the last decade of loss: if you can at all help it, don’t go through it alone. I know this is not an option for some many.

I cannot recount the impact of the community with which I am surrounded. If you are at all in awe of my healing stamina, as I am, I can point directly to the cause. My beloveds. As I adopt this new descriptor to my colorful collection of identity markers (cancer survivor), the existing and thriving descriptors have never been more important.

The only way to truly thank each and every person who has come body and/or soul to my side is to continue to thrive. Continue to declare my space in this world. Persist in speaking for those who have not the resources at my disposal, which I can only assume are vast - based upon the immense treasure of my loved ones.

Wednesday, December 13, 2017

Day 13

Fuck Cancer

On December 1st, I sat nervously on a custom sofa in a quintessential, vintage Seattle apartment atop the historic Diller Hotel. I’m not the kind of girl who twirls her hair and bites her nails whilst waiting by the phone, but on that day I could not help myself.

Two friends/confidants/fellow-sojourners scurried to my side as I reached for my phone and answered uncharicteristically (even answering my phone is uncharacteristic), “Hello, this is Jessica.”

Candace caught my gaze and I nodded.

The person on the other end was my trusted OB/GYN Surgeon. She and I have been trying to schedule a hysterectomy since June. We postponed initially due to the failing health of my dear friend, Kelly Clark, who had just decided to stop the chemo after a 7 year tangle with breast and eventually bone cancer when the clinical trials were causing more strain than their ability to decrease her markers could merit. She heard from her doctors, as many facing cancer do, “I just don’t know what we can do.” It was not a good time to be on my back for 6 weeks recovering from surgery.

Kelly died on Bastille Day, July 14, 2017. The time I spent with her in the weeks leading up to her last fitful breath are beyond precious to me.

It was mid-November when I decided to reschedule my hysterectomy. Also, I had recently found  a strange lump in my breast. Any of you who have met me or seen my breasts will understand when. I .tell you that feeling my breasts is a regular practice of mine. I am the kind of man who would fondle himself were he to have beautiful breasts. Only I was born with a vagina. And great tits. So I totally do.

I knew instantly. This lump didn’t belong. So, I asked my OB to check it out and she agreed to order the mammogram. I needed her to order it for me because I’m only 39. The deep pockets of Big Pharma have decided in all their wisdom that preventative exams for breast cancer screenings should only be covered in woman 40 and over. A recent increase from 35.

This was particularly stinging for me having known so intimately Kelly’s journey once diagnosed at 30 and to be waiting for results in the sexy apartment of the indomitable Tousignant who received her phone call at a mere 28.

Still, I had the imaging. 10 brutal days later, I had 4 biopsies. 3 days later when the phone played the ringtone I designated for the Seattle Polyclinic as an extra precaution to ensure I would answer, I was relieved to hear my OB’s voice.

I knew from “Hi.” I knew while I was suspended in the air like a Chevy with my left breast hanging down through a hole in the table so they could smash it with mammography panels as they punctured a gaged hole just to the left of my nipple. I knew when the ultrasound tech moved the wand to my left breast and all the air left the room. I knew when I finally worked up the courage to tell my husband and when he touched the mass, his hand recoiled as he exclaimed unbidden, “Fuck!” In some ways, I’ve always known.

But, when my doctor asked if I was sitting down, she removed all doubt.

“It’s cancer.”

The magnificent women either side of me clutched to my body with awareness as numb tears fell. The staccato breath and tight grip of shock triggered as my spirit spun upward in a vertigo inducing ascent toward the elevated sky lights like an anxious bridegroom climbing a spiral staircase toward a stranger’s bed. Words blurred like jazz. The phone rang again to set up the next of countless appointments. The phone rang a few minutes later and I answered one more in what has now become my MO:

“Hello, this is Jessica.”

This time it was the Breast Surgeon. How are you doing? Can you come in right away? Can we draw your blood for genetic testing? Can we talk?

It all happened so fast. The pace of cancer is intimidating. Test after test. Learning a new language. HER2 Negative. Tamoxifen. Chest wall.

In fact, today (as you’ll gather if you scroll to the bottom of the page to check out my appointment calendar) I have 3 appointments. The last, I hope, before my double mastectomy on December 28. Once healed, I begin 8 infusions of chemo over 16 weeks. Then 5 weeks of daily radiation.

I’ve unearthed this blog as a way to utilize a commucation tool that was invaluable when my mom was diagnosed with pancreatic cancer almost 6 years ago. If you’d like to embark on this journey with me, I will share my triumphs and tragedies as vulnerably as I dare upon this long and winding road.

Currently, I plan to work throughout treatment though I cannot yet be certain that I am able. For those who have asked for a means to offer support, thank you. You may do so as feels best to you, beit financial, domestic, literary, or prayerful. In fact, I can always use a dirty joke.

Well, here we go... deep breaths. One day at time. I will dance to the music that is playing. This for me is not a fight with cancer. It is but another dance in a story I have always been telling. I will heal. And even if I do not, I will dance.

Wednesday, November 14, 2012

Day 299

Having a birthday without the woman who gave birth to you, is a confounding experience.

It's like a chill that creeps up your spine and raises your hairs on end. One of those emotions that does not shy from physical expression. A feeling that penetrates the body's very reflex engine. A multitude of tiny lightening bolts through your nerve endings that leaves your fingers cold and stiff. 

Not that it's an entirely negative experience, though we certainly associate it that way. "Someone just stepped over my grave," many recite at such a moment. Facing mortality is also facing eternity. All of that to say, I've had those chills all day.