Ilene Kaminsky

My Struggling Ugly Days with Metastatic Breast Cancer

Everyone says to me that I don’t look like I have cancer. But I do have cancer. And there are days when I feel like I have all the cancer in the world. Today because of some screwup, I had been out of my pain medication for close to 48 hours. I take opioids daily to function and to have pain relief from the red ants crawling around my ant farm bones, biting my insides where you can’t see me.

I also take opioids to relive my abdominal cramping and pain from a continual battle with ascitic fluid in my abdomen, which I’m having drained again Tuesday morning and was supposed to have labs for today at Good Samaritan hospital, but I couldn’t drive. I couldn’t get to my palliative oncologists appointment either. My plan was 1. appointment and 2. blood draw, 3. then home. However, I came to find myself locked in a week long pharmacy-doctors office-nurse-communication struggle to receive these certain classifications of medication. I hope you never have to know the pain and suffering of metastatic cancer and the withdrawals associated with 48 hours of being out of your opiate based medication.

My beautiful angel friend and neighbor of 10 years had to see me like this today. I had to interrupt her busy day for this errand to get my medication. And she’s a terrific single mom of a terrific kid who I’ve seen grow up into a fine, happy, helpful and wonderful adolescent after 10 years. But to me he’s still the infectious giggling little boy. Only due to her being an awesome mom.

Yet today I know I scared her. I gave her my wallet and called Walgreens and she was visibly nervous. This is an ugly troublesome facet of my disease and a side reserved for my private hell. I do not even let Craig see me this way. Simon, seen here giving his mommy mouth to snout resuscitation, and love and kisses and trying to wake me up to feed him which I must go do, is the only one who sees me like this.

But I’ve decided to share with you the ugly side of metastatic cancer. The painful side. So, based on my no bullshit blog policy, I’m sharing selfies so that next time perhaps you’ll refrain from wanting to say to anyone with metastatic cancer, “you don’t look like you have cancer.”

Honestly Blogging: exposing our true selves intimately and deeply

I love certain blogs and posts most likely because I agree with the author or the point of view on a given topic. Human nature forces the mind migrate towards those who have similar views to our own. Naturally. But why do we expose ourselves so intimately on topics that affect our lives so broadly with such a dangerously wide audience, not only those who agree with and similarly like our writing styles?

Writing a personal blog provided me with something soul cleansing. I feel better when my honest words spill out onto the virtual page instead of, or sometimes along with, my tears. Isn’t “honesty” not the objective but the catalyst?

There’s no one who cannot see through you like a plate-glass window if the writing presented is disingenuous or trite. I get complimented on my honest no b.s. style, with regards to my primarily cancer-related blog posts. By divulging other corners of my emotional life along with cancer’s affects on my body and my spirit the therapeutic benefits become self-evident. This includes the sticky issues around how my husband’s depression effects me and our relationship. My blog also allows me tackle all kinds of issues through my poetry.

I’d not feel genuine nor as though I were presenting my life with authenticity if I don’t present the three-dimensional view of Ilene. So I publish it all – ugly, funny, beautiful, strange. 

Why a blog instead of social media?

Publishing my innermost feelings on a platform such as Facebook opens up a big can of worms that won’t get back inside without much squirming – kind of like those surprise spring snakes in a can labeled Peanut Brittle. Frightening and not very humorous. If a friend or relative chooses to read my blog posts they have to actually make an effort to leave Facebook, or Twitter, or Instagram, or LinkedIn, or… I provide a link on those pages to let those who want to know I’ve published a new post.

A closer look at the kinds of posts on social sites and the reactions they illicit, pushes me to take what I believe is the right approach for my purposes in the virtual world. Getting what I need and giving back what’s needed by others on specific sites primary purpose for taking a deeper look at what the right content – and at what comfort level I derive from each.

For instance: participation in peer closed cancer groups on Facebook; short messages on Twitter for communicating to the wider metastatic breast cancer community; and marketing to a wide general audience through more visually engaging platforms like Instagram and Pinterest for my vintage Etsy business and for my blog. 

“Tell me about your mother, yah?”

Writing is therapy – and not everyone wants to know what lights up the CT scan from deep within. And there are many who need to know there’s another person who has been through a similar experience so they don’t feel so alone with their malady. They find our blogs eventually and on their own terms. That’s one reason to keep writing – it’s not cowardly or hiding out cowering from feeling vulnerable in a dark corner of the web at all. It’s rather brave to spill your guts in the midst of history’s most public forum of all – the internet. Our blogs can be read by a hugely wide audience including people we’d prefer not have access to our fears and our pain. 

The recursive act of throwing ourselves out there without any reason to believe someone will or will never read our stories leads us down an unknown path without a map or a compass. We jump off into a great unknown and hope for the best.

Why am I telling you all this?

I read a wonderful blog post on Fractured Faith – What have you written about today? My comment on the well written and thoughtful post (equally well written and thoughtful as the rest of the blog posts) sparked a lot of thought. Specifically thoughts about why all this gut spilling and what purpose it serves me and those who slouch towards my posts?

Additionally, I sat down to reply thoughtfully to a heartfelt comment on a prior post. The comment’s author emphasized feeling connected to another human being who also happens to be a cancer patient. Since I do strive to bleed on the page without prejudice and with no b.s., a feeling of interconnectedness sparks at the moment when my words meet a like mind or a like person with similar experiences.

That’s the point (to me anyway.) A blog can create a bond between minds, no longer strangers to one another. And that’s where the gift of writing comes back to pay dividends. The value of those bonds doubles upon knowing your words met someone during their time of need – or they wouldn’t have sought out someone or something to connect with – and therefore it’s not my right to keep it all to myself.

It’s my privilege to pay forward to others who found me in the vastness of the internet’s expansive universe of people just like you and just like me. And we gravitate towards each other here, don’t we?

 

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.)