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.

 

 

A Must Listen BBC “About Death”

Bravery on the precipice of the end of life.

British woman who exhausted clinical trials for metastatic lung cancer died the next day after recording this podcast for the BBC. I’m not afraid of death – my belief is this gift of life in our physical manifestation of consciousness is bookended by not being. I’m not – I’m here – I’m not. For those whom we leave behind when we are no longer, really need to try to listen to her talk. She had a tumor wrapped around an artery, and liver failure amongst other mets, contributing to her demise. “All I want is options, because when you have options you have a chance.” Indeed, brave woman, indeed. My greatest gratitude to you posthumously for this gift of speaking out when you could have quietly gone into that good night.
— Listen on www.bbc.co.uk/radio/play/p06hkhx7

Cancer and The Diffusion of Time

It’s improbable, but not impossible, that I’ll have enough time post diagnosis to continue my PhD in quantum mechanics. Or, even begin one for that matter. My academic career ended years ago, after embarking on a failed attempt at finding the funds to eat and live while pursuing a masters degree. I gave up my dream of becoming a full time writer who traveled extensively, to actually make a living wage in marketing during the rise of the tech economic hot air balloon.

Each day, the alarm did its best to beat me awake at 4:30 am and after downing my cup o’ 5 am Cuban coffee (cortadito) and hour at the gym, I ran my young self a quick shower and took a quick drive to the office. 15 minutes took me over the causeway connecting Miami Beach to the mainland to downtown and down Brickell Avenue. And I always arrived at my desk early.

D-Day and Chronic Lateness Syndrome
Since diagnosis day (D-Day), I’m persistently, consistently late. I find myself getting distracted by just about everything and even simple tasks seem to take me longer since D-Day. However, it’s something I’ve never quite gotten used regardless of how I try to trick myself. The use of anti-dilatory tactics such as setting clocks and watches 20 minutes fast do not work particularly well, if only to confuse everyone in my house.

Since D-Day, I’ve absorbed many lectures and books on quantum physics. Cancer artificially inflates the time space continuum, and my greatest discovery yet, although I still await word from the Nobel Prize committee (who also are chronically tardy), is the following equation:
time + cancer = tardiness
Or
T + CN = D (where D is the diffusion of time)

Needless to say insomnia keeps me from getting to sleep until 4:30 am, not getting up to go to the gym before work as was once the daily habit. Due to an early and forced retirement, I look for ways to redefine my purpose in life. I’m a writer, so I’ve been able to circle back on an early career goal and I appreciate that immensely although it’s not ever going to earn a living. I’d be incessantly pissing off editors for my inability to meet deadlines. So my blog and notebooks replace professional gigs, although one day I do hope to publish a chapbook of poetry. Before I leave this conscious life that’s one goal I hope I’m not late to achieve.

A Very Important Date
Yet I’ve forgiven myself for my lack of timely arrivals and missed deadlines. Sometimes, poor health or overwhelming side effects, impede any hope st beating the clock. Mornings set the pace simply to get out of my own way and escape the house before sunset, or to even ready myself for the occasional visitor. Any of the first three tasks of the morning, after I ascertain how I feel physically and emotionally when I get up, effect how to measure out the minutes of elasticity in my schedule. Rolling out of bed, first shaking off the painful pins and needles of neuropathy, next reading and/ or writing while sitting on the porcelain throne combating turgid bowels and numb ass cheeks, while the hat trick amidst silent suffering, fumbling, squeezing and allowing my medications to take effect, thirdly, deciding whether or not shower or take a bath. Depending on my overall health, pain, and fatigue, I obsequiously send texts and make calls, if it’s necessary, to rearrange my schedule for later that day or another day altogether.

To cope with losing self worth and the care of others as I look less and less like a good friend and more and more like a Prima Dona, I use different stratagem. Aside from pure honesty, which I cannot imagine doesn’t sound like pure bullshit to some people, I pre-empt disappointing others with a written warning before accepting an invitation: “ATTENTION: chronic illness causes chronic lateness. Plans may change without any written warning or consent. Your mileage may vary”

I’m generally about 15-30 minutes late, even to see doctors – my palliative oncologist in addition to my oncologist. Although my palliative oncologist helps with most of my symptom management including the psychological impact of having an incurable disease knocking on my door day after day, she cannot help my chronic tardiness. Metastatic cancer is neither easy nor fun, and most people don’t believe I am as sick as I am. I refuse to let it dampen my optimism. Or, more truthfully, I try not to allow other’s opinions to bring me down. False Stoicism isn’t my strong suit and I tend to wear my emotions on my sleeve.

Makeup to Make Up
Yet even if I’m home all day I still get up and get dressed and put on some makeup. Mascara and a curling iron become my personal therapeutic counselors. I really couldn’t care less if people say I don’t look like I have cancer – or if they don’t even believe I have stage 4 because I still have most of my hair. It’s my internal state that makes the most difference to my overall wellbeing.

Motivation and timeliness don’t always go hand in hand. I’m relatively optimistic and motivated by good intentions every day. It’s a new day, there’s light and life and love around me and I’ve achieved consciousness after awakening from my unconscious state of sleep for the gift of another day. For that I celebrate my life and I get dressed as nicely as I can. As ridiculous as it may sound, this act seems to help my ability to find positive motivation. Perhaps I may overdress and take too long in doing so; otherwise I may not back the Mini out of the garage or dare think about walking out of the front door. Those kinds of days cause a cascade of cancellations and schedule rearrangements. It would feel awful to the people who got bumped to throw away any part of their day and some of their well-meaning hope with a bad bet that they won’t sit idly waiting on my appearance at some future point. I feel really awful when I think I’ve wasted someone’s time, knowing to the cellular level how precious and few are every moment to the living.

Writing It Down
Sometimes just looking back at the week or month or year gives me hope and also perspective that I would have forgotten had I not kept up with writing. I recall numerous times with good friends, cancer peer groups, and fundraising events when I arrived on time. To the delight of others let me add, and to my humble embarrassment.

Writing too, chases the hours like a dog after a mechanical rabbit on a race track. Once the shoot opens I sprint through an idea for an essay or a poem until it’s complete. Usually this happens late at night or early in the morning. And with that, Simon my cat has come to let me know he’s finished puking on my new rug, and my friend is driving from Reno as I finish up editing this post. My husband still in the throes of chronic depression will not get out of bed until I do.

I must wrap up this lengthy discussion by saying this: if I’m late to my own funeral I won’t be a bit surprised, because cancer also succumbs to my late arrival. I’ve already beaten the artificial deadline of my initial diagnosis. In the meantime I’ll keep smiling, getting dressed to celebrate each new day, writing, and hoping you don’t mind the days when I just can’t seem to make it.