The history of Metastatic Cancer: written by the losers

The documentation of metastatic breast cancer is written by those of us who lose our lives to the disease. No one gets to write the end of our story with “she lived happily ever after” – but we aren’t losers. We struggle with the language to describe how our bodies ultimately succumb to a terminal illness. No war, no fight, no metaphorical discourse makes sense. The fact that the medical community focuses on prolonging the time we get to spend in our diseased bodies, rather than prevention of progressing to stage 4, evades understanding with the exception of profitability. Each of us walks around with a dollar sign attached to our backs instead of a bullseye. There’s no gun fire heard in the end, instead the cries of pain and anguish, fear and loneliness, and finally one last breath of life exhaled into the atmosphere.

There’s parts of our stories that arise out of discourse between one another in our tweets, our Facebook posts, instagram photos, and our blog comments.

As Churchill stated: ‘History is written by the victors.’ Further, the answers to any questions regarding history are delivered to us by the living, so who can really say how truly corrupted the cannon of medical information we digest is by those treating the people suffering from this disease. The honest and most dependable information comes from the losers who leave behind the richest historical record of all. The gift of our stories tells the truth that should become the data to help inform the people who come after us. Unfortunately there’s very little light at the end of a very long tunnel to lead the newly diagnosed to a better prognosis than death.

Perhaps it was Winston Churchill’s novel thinking about his own dangerous words and bloody victory as it applied to the war through which his convictions and leadership pulled his country’s people. For the most part. Yet the end of the war left an unconscionable number of citizens dead and untold billions in collateral damage to Great Britain. None of the dead can speak for themselves about the way they died or about the atrocities they witnessed or even committed. The United States, late in entering the war, as it’s been far, far too late to fund the research to fuel its war on cancer and other interesting PR campaigns without true commitment for the good of humanity.

Cancer history isn’t written by the winners

In the case of cancer by reading my blog and the words of so many others before and who will come after me, we are creating the historical record of metastatic breast cancer. Our words will outlive us. I wonder quite often after I am dead will my words still carry any meaning. I’ll be speaking beyond the grave to what I hope are fewer and fewer people who need to know that they’re not alone in how they’re feeling.

My blog and hundreds if not thousands of cancer blogs and the recently notable rise in cancer biographical book publishing sends an awfully different message.

Losers write history, too

The songs of the dead will play long after our voices die with our bodies. During the final week of Breast Cancer Awareness month, October 2019 A.D. I decided to look back at my comments and answers to questions posed to me by readers. Some could become blog posts in and of themselves. More often than not, the comments respond to emotional reactions to the relative post.

Here’s a few of my many comments in response to those speaking out in response my posts or on other blogs I read for information, support, and even laughter, I wanted to pull together to share here (edited for brevity) and as provocative fodder for new discussions I hope in the comments on this very post.

Many contain broader ideas about metastatic breast cancer. I hope you find these quotes, though out of context, as interesting as I did. They’re not the blog posts themselves, so you won’t get redundant content but a look back at the history of a metastatic breast cancer thriver – me as well as those to whom I’m reacting.

History is therefore written by living. Here’s part of my living record, and I hope you’ll respond to some of the more provocative comments and keep this discussion alive.

Quote Me

“Cynical and bitter” – my husband remarked on a read of the first or 31st draft, of this post. I said rubbish, my peeps will understand because it’s true. (although an ugly series of thoughts generated this puddle of poesy. A physical setback created a situation where my tendon had locked up, causing the foot to painfully turn inwards and I threw myself in a hot bath, post morning pain meds and fell asleep in the tub. I woke up crying “it’s not fair why is this shit never going to end,” and then out came some inappropriate jealousy of people who got supported because they look outwardly like they’re sick. I try to make every day as good as is possible in my circumstances. Including looking good as possible to somehow trick my consciousness into believing I am okay. Some people can outwardly smile in all,that pink light shining down on thief ‘cured’ bodies. But unfortunately these diseases give us a vocabulary and emotional shorthand that we immediately understand, making rich connections, both on the cerebral and gut levels.”

“Yet it’s important because everyone has such a different experience and it’s important to understand how to deal with things when someone is newly diagnosed especially with metastatic cancer. We don’t know what tomorrow will bring – we cannot make long life plans and our time is so valuable it’s hard at times to hear about people griping about things that mean nothing in the grand scheme of things. I’m sorry you had to go through so much horrific treatment as well – I was already with my second oncologist by the time this practice had gotten back to me. If I’d waited for them I’d be dead already. “

“Everyone must learn what they can do for themselves and try not to freeze up when things seem at their worst. I am the head of my cancer care team. No one knows me better than me and a one hour meeting once a month if I’m lucky these days since my oncologist is so over subscribed. But he listens to me and responds with real solutions that we agree together based on what I want and his knowledge. Still, I wish I could do more for you to help but I think maybe just knowing we aren’t alone sometimes works wonders.”

“Oh it was horrifying and only my persistence and perseverance paid off – I called CalMed and explained my situation and I do recall not being able to hold back my tears mainly because of frustration not the diagnosis since it was difficult to figure out, which was worse. Within 10 minutes I had gotten switched back to my original primary care physician and then was given proper treatments and taken off tamoxifen and put on to aromatase inhibitors, into chemical menopause and began Xeloda at home. I did quite well and even battled my way after changing oncologists twice and finding a surgeon to do an actual lumpectomy to remove a small leftover of a tumor and to get a fresh pathology after success with Xeloda.”

“I did not fare well on many of the injections and had severe responses to them until I was put on xgeva, faslodex and xolodex monthly. That worked but my oncologist only wanted to see me once every quarter and punted my care all over to palliative who are horrifyingly overworked. I then switched to Stanford and have been there almost two years this month. Every December because my original oncologist wasn’t watching closely enough and a mishap the following year with more insurance nightmares I filled up like an oompah loompah with ascites abs was drained multiple times. I only hope this year to be in Hawaii on Kauai as a safeguard to being put in hospital – hey if I do have to go the view will be better anyway.”

“You know as well as I that no matter what country one resides in that self advocacy will get you what you need more than waiting for things to happen to you – you have to educate yourself and make it happen for you.”

“It’s a way to have the patient blame themselves for being a caring person? Everyone has stress. Everyone’s got some form of childhood trauma. Looks like an easy way for researchers to try and finagle their way into the spotlight. Pigeon holing and creating a way to have cancer patients blame themselves doesn’t seem fitting or fair, just cruel and wrong. People back in the 50s were far more repressed and didn’t openly discuss feelings around the dinner table, but the incidence of cancer was 50-60x less than it is today. I suppose those times when abuse took place couldn’t possibly have been as severe as today (sarcasm) but you get where I’m going. Environmental causes increased the incidence of cancer as well as other factors I’m not as well versed in talking about. If love to hear your thoughts- stress is on the increase for everyone women especially which is why heart disease is the number one killer of women today. Cancer is a close secondary
Pain like beauty is more than skin deep. The difference between the two is less than I’d imagined prior to cancer. Beauty takes lots of appointments – so does cancer. Beauty uses all sorts of carcinogenic chemicals to eradicate being ugly – so does cancer. Beauty can be excruciatingly painful- so can cancer. The end result of finding the best way to enhance oneself to look beautiful can end in disfigurement – so can cancer. The endless list in my head goes on for miles. My point, Nancy my dear virtual friend without whose support I’d echo in a wide Sargasso Sea of words, is tha the surface is all we can scratch here. The depth of the itch lies beyond what conventional means alleviates and we are left swimming in pills, yoga, and advice none of which will even touch the emotional break of a heart that knows it must stop beating from the ugly disease killing the body and taking another beautiful soul down with it. God. Cancer really sucks.”

“It’s hard to ask for help and mostly when I do ask it’s too hard for people to follow through on their offers of “call me if you need anything.” So I typically drive myself to and from chemo, and other appointments, etc. No one likes to feel like a burden but read my blog piece on learning to receive as well as give. I feel like it’s a hard lesson to learn that people want you to accept their help and accepting graciously doesn’t allow the giver to feel good about helping out. It’s rejection of the worst kind because neither person wants to say anything to make the other feel badly. It’s a tough one…”

“Your commentary on my blog never cease to inspire me to keep writing and always bring my heart to a quick stop. You remind me of why I started this blog – so those with terminal illness and cancer diagnoses know they’re not alone in their experiences, emotions, and high and low points. While not the same, dimensionally similar enough to feel a virtual hand holding yours and have someone to walk with even if just for a little while. I love you and I care about what you feel and how you feel. Your feedback means so much to me. What a day too – I have my last Taxol treatment Monday next week and then a little break and back on the Ibrance. Maybe the lighting of fatigue and chemo brain can give me the strength I need to write more and start the first book. I thought it would be poetry but it won’t be. And as the draft starts to take form I’ll reveal the type of book and why I chose to focus that aspect of cancer.”

“How it’s it so hard to do this some days and others it seems so easy like nothing’s ever happened, nothing is wrong. Like day into night…I slept less than an hour last night thinking a lot about where my friends are, who I am as a result of their involvement in my life, some had a huge role especially people who I’ve remained in touch with for many years, people who I can see if I hadn’t seen them in 5, 10, 15 years and pick up where we left off. I think there are people I want to see regardless of cancer but in spite of also, if you know what I mean. My relationships have shifted so much, that instead of intimacy I have people I can rely on…it’s so strange. I would much prefer intimate, warm, relationships. Some friends have that some do not. I’m naturally a hugger and a physical person and I give love to people I care about very naturally. I suppose it comes down to not thinking about it as if we have terminal diseases when we see them. That said – If we didn’t I would not be in the company of women who I’ve come to appreciate as my peers and my friends- you included – and I absolutely think I may want to get over to the UK and maybe we all can get together for a day or two and I don’t think it’s out of the relevant range to believe that women like us cannot get a weekend together some by plane, by train, by car, to laugh and talk and actually meet. Wow that’s a thought. And given six months and some funding potential for rooms and such I bet we could do it. Have a think on it…I believe in anything I want to manifest can come true if I put my all into it. And speaking of all, time to get ready for chemo and oncologist appointments! Yikes”

“Terminal diseases will turn a coward into a superhero, a shrinking daisy into a tall redwood, and push us to the edges of ourselves that we never dreamed we could see. There’s no other way than to put it all out there regardless of the facet of cancer that I might focus on that week or day. There’s a lot of layers of emotional pain and energy to explore, though the tendency is for the most prevalent to wind up on my blog. Yet there are so many issues if I have the time I will try to cover – I wonder what people want to read about and would love any feedback regarding topics you find most helpful or interesting to read.”

“A “cure” is a misnomer make no mistake. However to cure each person based on their individual types of cancer and the millions of permutations that caused our bodies to not recognize cancer cells it heretofore killed off with our own immune systems is the key to survival and treating chronic not terminal cancer probably won’t make enough money for research in pharmaceuticals but for the hospitals, cancer centers, and teaching hospitals that tirelessly and for less money work on this very problem. Maybe the arrest of the opioid pushers will bring to light the corruption of such awful people who profit financially on our backs.”

“I wish you peace in your grief. Anyone lost to cancer is one too many. I believe the journey the living make after the death of someone dear never comes easily, and no amount of words make the time go fast enough to find the day when you’re not feeling those awful pangs of the indescribable when a song or some other reminder brings their memory rushing back. I cannot listen to certain music without immediately recalling memories of my dad. I try not to become tearful when I sing along. But any fear of my own death is in leaving my dear ones behind. Love is the tie that bounds life. I’m hopeful to be certain with regards to a curative process and hope that we will find a way to access our own powers of healing through immunotherapy in my lifetime. It’s a strange case when the pharmaceutical companies cannot use a cookie cutter, one size fits most approach to maximize profits. We won’t see it soon enough.”

“As for pain – I’ve had a palliative oncologist both prior to and since I’ve been with Stanford. Palliative medicine is so greatly misunderstood- I am grateful but I am also using opioid based pain meds as well as meditation and mind body deep work. But I hurt pretty constantly. It doesn’t show but boy it hurts. Bone metastasis is just crunchy painful if you know what I mean. I think it’s deplorable your oncologists don’t look at the whole patient and palliate your pain with integrative medicine, such as ontological massage, acupuncture, medication, and CBD/THC. CBD doesn’t work well topically and – opinion only – wastes money I don’t have. Further my palliative oncologist has recommended smoking the oil 3:1 or 2:1 CBD to THC ratio. There are medical marijuana growers who specialize in these types of tinctures. It also helps with my appetite and with sleeping though it makes me a bit goofy, it’s better than most other addictive things we can ingest.”

“It’s often difficult when terminal or chronic illness doesn’t comprise ones daily work routine to remember we all end at some arbitrary time stamp in the future. While feeling sorry for myself over the last week or so, I thought a lot about my loss of identity – and the therapy of writing got my mind to shift as always to a more positive way of viewing what I honestly thought about as wasted time in a career. All the work to climb every last rung on that still male predominant corporate ladder – especially in high tech without missing a single one. But not really. To your point our strength is redirected to navigating the tangoes of paper, contracts for insurance, finances etc. it’s like being the CEO of MyCancer, Inc. Do you miss the daily grind? Maybe I just was glamorizing whats no longer available? Death is death. Everyone’s life ends the same way and it’s the only thing no one has any assurances of what happens once we do die. At a visceral level it’s hard to accept although intellectually we bravely deny any fear. It’s uncertainty I think.”

“The statistics are completely different from the reality regarding the mean lifespan from the time of diagnosis and mortality/ end of life. It’s as individual as the cancer itself. There’s too many influential factors such as stress and environment to really understand. The fear of death never weighed me down much, and I find myself interested in what happens to our consciousnesses after our bodies fail but not interested enough to lose my gratitude for the hope of another day of life. My commentary has far more to do with the questions I’ve heard from others, their fears, and their legacies. My legacy, I hope, is to depart our mortal coil with a couple of written documentations/ books reflective of my consciousness while I was here. A way to travel to the future and bring the past forward for as long as people need to read the thoughts of their predecessors. In that my respect for you and your accomplishments exponentially increases as my familiarity with your grace and your talents increases. Our lives will go on and not have been in vain for having the courage to use our voices to yell out drink the past so that others may benefit from our unnecessary and early deaths due to a disease that’s not only on the rise as a statistical result of the illness we both unreasonably suffer from but that we both use as a platform to grip those who can’t find the words to express how they feel and how precious life becomes after the gauntlet drops.”

“Technology…changes with the will of how frustrated the steel-nerved steady user can tolerate. I’m so sorry you had to go through some irritating stuff to simply post a kind comment. Imho WordPress is the best platform, after TypePad, and far above blogger and the corporate blog software I endured during my short 28 years fighting the good fight as a woman in high tech. I suppose in some ways I hope to leave a similar legacy in the works of metastatic cancer. Working with my words (see my personal tech blog https://techronicity.typepad.com/blog/ – which I no longer keep up but keep online for posterity I suppose if nothing else.) Good news: C is better, and my hope improves with each day he regains his humor and his memory. In some ways depression is a lot like the effects of cancer and chemo, the deathly combination that sticks us like a stamp on a paper envelope. Sometimes my essays ramble on because they can. But this blog comes with too high a price for the expensive toll it takes to walk on a path with the freedom to speak my mind. But speak I must, and for the kindness of your expressions of gratitude I am humbled.”

“But it’s all those yes’s that turn yesterday’s into
Tomorrow’s and waking up to say
Yes I’m still alive on this new today.”

“This particular poem was written in response to a “yes” writing prompt on the Journey Beyond Breast Cancer @JBBC blog. It’s wonderfully rich in content as it’s author is an expert marketeer, writer and one of my online #cancertribe who supports me from a distance, as so many of the writers and readers who have touched my life and for whom my blog has value in our shared experiences.”

“Say Yes, A Toast
To Hope and to help
And to healthier food
To exercise, to water are really good
To Cats no doubt oh positively
But I suppose, i guess, dogs are fine, though sniveling
To Hugs, to expressing ourselves creatively
And to Travel to places, some close some a far
And ommmm… yes to your Breath and for seeing the stars
Friends, new and old even those left behind
It’s for Advocacy and even acting immature
And binging on when you want to unwind
It’s for soft socks, sunshine, and the perfect hat
Yes for Family (including by blood and by choice) who love us and our crap
A big yes for our Carers
Even still my chemo port
To oncologists and nurses and behind the screen support
That’s including our blogs through which we’ve “met”
But pardon the pun, is it coffee time yet?
And lastly but not leastly, a big YES to Marie
For compiling our posts nearly every weekly
With wonderful, bravely honest and willing
To openly share to the lonely, the scared
And say yes we really do care about you and we dare
Through our comments and emails that we always answer
So fewer people feel must feel all alone with cancer.
And I can think of a thousand more YES’s
And probably equal a number of NO’s
But yes isn’t just about false positives
It’s about letting our lights shine and glow.”

6 thoughts on “The history of Metastatic Cancer: written by the losers

  1. Hi Ilene,

    Gosh, this is powerful and so provocative. “The honest and most dependable information comes from the losers who leave behind the richest historical record of all. The gift of our stories tells the truth that should become the data to help inform the people who come after us.” That’s quite profound.

    Sometimes I think about what will become of our writings after we’re gone too. Does any of it matter and if it does, for who and for how long?

    You definitely gave me things to think about in this one!

    Ditto to what Marie said. x

    1. Thank you, Nancy. As someone I love and respect, your comment means a great deal to me. Your writing is your legacy. It will live beyond your lifetime and your books are so very helpful – the story you tell in Cancer…didn’t make me a better person echoes so many of the core of everyone’s experience, it’s a seminal book, or should be, that anyone who is diagnosed with MBC should be handed along with their pathology reports. I can only hope that when I sit down in January to write The Hope Chest it comes close by example to what you’ve accomplished in your book. Do I think our words will outlive us? I do. Especially if we can insure them via some form of repository -which I do not think currently exists. Perhaps this project is one for a larger organization like MBCN or the American Cancer Society, to preserve and protect our legacies for those unfortunate people diagnosed in the future and for the oncology community to use to benefit research and improve the survivorship of others. I suppose by saying it it may become a task to take up with them while we are still strong enough to pursue this agenda. Not only US voices but global voices. Such a rich pastiche of styles, of points of focus, and of important information.

      Maybe we can use our collective power to make it happen. It’s really not so impossible a task. We both are certainly not afraid to speak up are we?!?
      💜

  2. I am so glad you share your story. I came across your blog and was uncomfortably drawn in. Cancer is such a terrible awful word – there is never a good response to it. I followed mostly out of sheer respect for your strength. Not long after coming across your blog my friend, who is more like family was diagnosed with pancreatic cancer. I can’t even imagine the emotions faced with the C word front and center. Your blog, your sharing helps me relate. I have such great respect for the battle faced regardless the outcome. Thank you for sharing and posting for so many reasons.

    1. Marie I so appreciate your feedback and it means so much to me. As writers we put our very selves on the line especially with such a personal matter as cancer. The most secure person must feel somewhat “exposed” by laying out their experiences with MBC, like a vivisected frog pinned to a table. Receiving compliments such as yours, especially because I respect you and the good work you do, give me the fuel I need to keep writing and continue to improve with each post. I hope I can sustain it as I commence writing a book beginning in the new year.

      Thank you so very much for your ongoing care, support, and encouragement.
      Much love,
      Ilene

  3. I personally think your writing and honesty will continue to be read as long as people suffer with cancer.
    As you know I work closely with cancer patients I see many sides to this journey.
    I can write about it from the perspective of a soul midwife, from a partner , a lover , a friend.
    But never as you do.
    Your words have such gutteral honesty your description of living in a diseased body really hit home to me.
    I’d been having a conversation with a friend I’m working with and she was trying to voice how she felt about “walking around knowing she can’t be fixed”
    I have forwarded many of your posts .
    It takes time and courage to write about subjects that many are scared of cancer being one of them .
    I thank you for your time courage and honesty.
    You shall never be a looser you have helped many with your words .
    Much love joolz

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