Euphonious Cancer

Tonight about 7:00 after chemo, I fell asleep leaning back in the driver’s seat of my Mini in the car park adjacent to Stanford South Bay Cancer Center. A deep, unpredicted snooze just after my second to last Taxol infusion. * Apparently, I’m deathly allergic to yucca, the tree Taxol is extracted from, and I stopped breathing during my first full strength dos back in January. As a result of this not breathing nonsense, my oncologist’s orders now include 50 mg. of IV Benadryl through the three pronged port in my right chest wall.

Then comes a hard, dreamless nap. Sitting snoozing the clay gray recliner, tucked under a nice clean warmed blanket, a soft gentle breeze of the air conditioner woos me toward unconsciousness. 30 minutes later, the nurse wakes me to ask if I will, “recognize my name and date of birth by reading the print on the bag,” which I slur aloud for her to decipher and back to lala land I go.

Waking to the sharp beep beep beep of the monitor letting everyone in the four story building know I’m done, a nurse I’ve never seen before rushes over startling me. She asks if I’m okay to drive. Then she begins the process of unhooking my port and rushing me out of the center. I can hear the always annoyed charge nurse asking her, “is she still here?” “YES!,” I answer for her. Jeeze. Even five boxes of gourmet brownies and blondes weren’t enough to make my twin final infusions more pleasant. No brownies for you, lady!

In the car park, where my second nap took place, sometime between 7 and 8:15 as I slept, my neighbor texted to warn me, after I’d visited last night with her and her teenaged son, that there’s a very very bad flu infection that her son caught and that I should stay home and out of public for a while. A week she advised. Her son had a 101.8 degree fever and projectile vomiting, so as they waited at urgent care with other flu sufferers, she texted me. Her tone was somewhat panicked; likely he was contagious the night before seated a foot from the television with headsets on playing a first person shooter online video game. I sat with mom about five feet away yapping for about an hour begging her two dogs to stop jumping on me and scratching the shit out of my legs.**

I arrive home about 8:45 starving but sit down to write a poem, sandwich instead of a proper dinner in hand. I’m immediately happy with the result, inspired by a post on Robin McGee’s blog, the book eponymously named for it, The Cancer Olympics, she includes a song with each post to evoke a mood or her feelings or to create a more upbeat environment. The post is a goodie and so is her book. Recovery, Homecoming, and Gordon Lightfoot’s Your Love’s Return”

This life with cancer, with it’s forced retirement, compromised immune system from the treatments, fatigue, pain, and a life full of unknowns and mysteries, stress and anxieties, I still have hope. A wonderful writer and psychological counselor, Karin Sieger ‘s blog includes a post from a request to submit favorite inspirational poems and I submitted three. Read her inspiring quotes from cancer survivors and thrivers here .

This is for you Robin and for you Karin, for enriching my metastatic and making it a little more livable.

Euphonious Cancer

Invading my body with water
Washing my mind with a drink
Cancer infuses by rushing to slaughter
Every cell, every organ, everything.
My dreams rust and squeak as I walk
In a dream impossible and unknown

By erasing misbegotten memories
Ugly faces of the impossible and unknown
Whose lifeless bodies lie dead in an armory
Too heavy for the metal, I’m warned.

Sickness steals sleep under conditions
Of cancer, impossible and unknown,
Squatting inside cells without permission
Living on the land of the corpse I called Home.

A map I drew of places impossible and unknown
Lines and roads point directions to one light towns
Etched by the hand of a writer in stone
Furiously chiseled before the words “we found…”

Passing by shores waves slap and erase
My memories of flights touching down
Furiously scrawling recalling the places
Using hands, now impossible and unknown.
Using hands, now impossible and unknow.

*As I sat writing this post, I find a new spell checker auto correct update forgot to learn the name of my treatment, now changing “taxol” to “taco.” Who wouldn’t rather eat tacos then get chemo infusion of a derived therapy from the bark of the yucca tree.

**Why do people feel the need to defend a pet thats untrained and causing some damage to a houseguest? How about it takes me 2-4 weeks to be rid of the blood blisters caused by those nails.

Why Your Voice Saves Lives: Participation in Breast Cancer Research and Virtual Peer Groups

I owe a tremendous amount of gratitude to patients and other participants in breast cancer research; to those who took part in important studies that eventually translated into marketable therapies. Of course I’ve mixed feelings regarding the enormous financial gains made by what now we call the “cancer industry” versus the sky-high cost of care in the United States, where people die because the cost of treatment and the lack of funding for providing those treatments. Reprehensible profiteering on the lives patients, their families, friends and their caregivers makes me feel more nauseous than chemo. However, it’s also very difficult not to participate in current studies both to receive the possible benefit and to show my deep appreciation. The gratitude to those who continue to provide new therapies of all types not only the profitable pharmaceutical companies. I’m addressing specifically the indebtedness I feel for those selflessly gave us the gift of their time, bodies and spirits so that I and others might stay alive longer. (As for any cancer diagnosis but especially after a stage IV cancer diagnosis.) It’s our lives that preserve their legacies. Prior to so many breakthroughs stemming from research in breast cancer, I’d have received an extremely bleak prognosis upon presenting de novo with hormone receptor positive metastatic breast cancer in March of 2015.

The Legacy of Research Participation

Today I continue to live and to thrive because those breakthroughs brought to market important new medications or combined therapies such as Faslodex and IbrancePALOMA study of Ibrance plus Faslodex. The PALOMA-3 study’s findings was very recently published in 2016. The findings published nearly simultaneously to my decision to utilize Stanford Cancer Center and change my oncology team were immediately put to work in my body. The median mortality expectancy for metastatic breast cancer passed months ago in no small part due to the women who participated in this study gave me their lives so that I could extend mine.

How do I thank them? Participation in further studies and with daily gratitude to those still with us and those who succumbed to metastatic disease, for which we have no cure. (As of this blog post, MBC receives a mere 7% of all funding for breast cancer research. Ask any person with MBC. She knows this statistic well. And if she doesn’t it’s simply because she’s recently diagnosed and still in shock.) When a study comes to my attention for which I am a good candidate, I put myself forward. So far I’ve not been able to take part in a drug or chemotherapeutic research program. Fortunately, studies do not always include the physical aspects of cancer treatment including medications, machines, and chemotherapeutic protocols. Advancements in research wouldn’t be possible if not for those who participated – most of those good hearts long gone. I‘m committed participating in studies for which I’m a good fit; I view it as a fundamental part of my legacy including writing. Additionally, recent studies include writing and it’s therapeutic benefits with cancer patients as well as libraries of online story banks meant to preserve the true legacy of a person’s odyssey. These stories help those who inevitably will find themselves with the shock of the life altering words, “I’m so sorry, but it’s cancer.”

How to Find Studies

Psychosocial and long term health studies such as Dr. Susan Love’s breast cancer research portal and the Army of Women, help to enrich the extended oncology community’s understanding of the full extent of how cancer effects our lives. This included questionnaire style research in the Health of Women HOW study . Research such as this have my full participation when I’m tapped on the shoulder or I stumble onto one through social media, research portals such as the National Institute of Health’s Moonshot Initiative , as well as through the network of people in the metastatic breast cancer community.

You can find our network all over the internet. Our network is made up primarily of women, and albeit a small group, we are a vocal group. Try doing a quick Twitter search on the hashtags #metastaticBC or #stage4needsmore or any other breast cancer related keywords. If you’ve never done so, I encourage you to participate in these conversations. Questions, answers, musings, scheduled Twitter chats, and new friends await you with open arms. There’s a lot of virtual love to tap into that can become a safe haven when our disease becomes a heavy emotional and physical load. Facebook, Instagram, and other social sites include photos, quotes, inspiration, and many other links to help when you may need it. Sometimes just putting a question out to a group will bring you answers and assistance you need to find a better solution to a problem or encouragement when you’re in need.

Writing for My Life

In offerings of possible help and the advantage of my hindsight and experiences, writing is my second most rewarding and therapeutic activity. I encourage friends and acquaintances to participate in research and to write. Write privately or publicly. Write in short form on your computer or in a hand written diary. In navigating your experience, the information about yourself and whomever travels along this rocky path becomes an invaluable tool in self advocacy. I cannot put a price on my writing out my life in black and white. I’d not have the benefit and positive self-encouragement in seeing the positive changes in myself over three years and eight months since diagnosis.

Learning to love myself and understanding the true definition of gratitude came to me with a very high price tag. However, if my life and my legacy helps in any way my peers as well as those who will unfortunately, inevitably be diagnosed after I’m long gone, then it’s a life well lived. It’s also a life I can be proud of and grateful for having lived. I’ll be 54 next year – my diagnosis came just three short months shy of my 50th birthday, at 49. I’m beating the odds, though beating them is fatiguing and emotionally charged at times. That aside, if you read this, and I hope, take away one key point, that is participate. Participate as you feel you can and in which studies and write as much you feel comfortable. The life you save may be your own (or your daughter’s, or your best friend’s, or a stranger who thanks you in her daily gratitude ritual, like me.)

My Bi Monthly Cancer Wellness Survey

If someone handed you a clipboard with a survey attached regarding your “wellness” today, how would you respond? Doing my best to circle the closest answer to each inquiry using various rating scales, I hand the one-sided piece of paper sharing all my hopes, dreams, pains, and happiness to one of two nurse practitioners. Neither can truly comprehend the fitness of m6 mind and body by grazing over my confessional. Worse, they seem as uninterested with a quick flick of the wrist it’s tossed on the exam room counter, after it’s removed from the clipboard. I believe I spotted an eye roll of cynicism as I sat watching for an6 sign of interest on their face.

As always I inadvertently misappropriate the ballpoint pen on temporary loan I really don’t need, given my penchant for purchasing an embarrassment of redundant office supplies, to fill in the survey: “YOUR WELLNESS: how well you feel so your cancer center staff could attend better to your needs?”

The Stranger
Immediately an Existential crisis ensues. Such questions provoke an intensely dramatic Shakespearian-Hamletesque- “to be or not to be” soliloquy of the mind, or just plain thought vomit. Hopefully I don’t puke all over the page as I must determine the scale on which my most important stressors exist including appetite and nausea. For instance, rating my ability to think and judging during this particular day a level of satisfaction with my relationships? Seriously I think it’s not cogent at the moment, but I answer evoking my centrist point if view, since going too far right means I’m really angry and headed too far left means I’m going insane with happiness. The middle answer for the question is “sometimes.” Makes sense I suppose and I do not need those prescriptions adjusted.

Also I’m pursued by this paper chasing mind stalker to rate my current pain level. Do you mean right now? This morning when I got up? In general? If they mean at that moment right then or that just passed while I’m filling out this supposedly innocuous survey of my overall well-being? It’s giving me gas and a bit of acid reflux, plus this pen is really crappy for a nice place like Stanford and gives me a hand cramp that won’t let up due to neuropathy. (Note to self, donate nice pens for metastatic patients to lift in my last will and testament.)

What does it all mean?
Now the real kick in the ass – how I rate the meaningfulness of my life on a scale from excellent to poor, my activities in my home, social life, and community rating from completely to not at all. Two specific questions require an essay by Diogenes regarding cynicism and stoicism but there’s no blanks for open form answers. If you’ve read my posts you’re thinking the form might require five pages of addendum to control my verbosity. The questions in question:
My life lacks meaning?
Irritable, anxious, or depressed?
Rated from “never” to “always,” and “sometimes” the middle ground, on this particular day, I circled “sometimes.”

Sometimes my life lacks meaning for reasons such as my usefulness to society in general, to my financial stability, to my husband, to my friends, even to my customers in my Etsy shop – shameless self prhttp://www.yeuxdeux.etsy.com – should you want to do some holiday gift shopping from a very small business that directly supports metastatic breast cancer at the grass-roots level.

The purpose of consciousness might be as simple as love. Therefore we are all here to bring each other joy through love. And I firmly believe love is our purpose. What if, as imperfect as we are, we can achieve a clearness of mind to allow our thoughts about people to fall away, and rather than judge them love them instead? Wow! the joy we could feel if we lived without those thoughts, and the love we truly feel could comfortably be shared even further than inside the doors of our rooms.

Try a little tenderness.
Experiment with the following: show a little love to somebody you don’t particularly like today and see how your whole attitude about them and yourself changes in an instant. Perhaps, you can love yourself a bit more, too. But don’t give them a satisfaction survey when they’ve been loved sufficiently by yours and their agreement, because you’ll lose the squishy warm feeling of human interaction to the marketing puffery even taking place in your personal brand study.

Cynical? Nah.