Metastatic Cancer a Look Back Through Interaction

History as Winston Churchill stated: is written by the victors. Further, the answers to any questions regarding historical facts are spoken by the living so who can really say how corrupted the information is we digest. However, in the case of metastatic breast cancer, the losers leave behind the richest historical record of all. And you’re integral to my historical record, dear readers. I decided to look back at the comments on my blog posts over five years of writing. At first to a few far off crickets and now to over 2,000 registered readers with over 22,000 individual hits on this blog. I wanted to know how the interaction between us had changed. And if at all, our virtual conversation had matured my ideas and my writings.

Perhaps Winston Churchill’s thinking about his own dynamic and dangerous victory as it applied to the bloody 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. History isn’t written only by 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 we’re gone. So I decided to look back at my comments and answers to questions posed to me by readers on the Cancer Bus. More often than not, the comments respond to emotional reactions to the relative post. Here’s a few of my own comments in response to comments or to other blogs and to questions on my own that I pulled together to share here and as provocative fodder for future blog posts. Note to respect others privacy I have only included my side of the conversation.

Many contain broader ideas about metastatic breast cancer. I hope you find these, though out of context, interesting . 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.

History is therefore written:

On jealousy of the caregivers others who seem outwardly “sicker”:

“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.”

On Self Advocacy:

“It’s very important to speak out and advocate for ourselves because everyone has such a different experience with cancer – there’s no one size first all solution. 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 (and was!) so valuable it’s hard at times to hear about people whining about the innocuous, the meanness in the grand scheme of things. “

“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.”

“In a case when 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.”

On Blaming the Patient for Failure

“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 is that 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.”

On Reaching Out:

“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…”

On Inspiration to Continue Writing:

“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.”

On the Impact of Cancer on Relationships:

“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”

On Resilience

“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.”

On The Cure for Cancer:

“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.”

On Grief:

“I wish you peace in your grief. Anyone lost to cancer s 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.”

On Palliative Medicine

“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.”

On Cancer and Careers

“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.”

On Legacy:

“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.”

On Saying Yes

“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 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.”

Yes

Yes to this moment and the one after that, to

“Yes!”’a toast to life and also to death.

Yes to cats, positively,

And yes dogs are fine too

More to give and to need even yes to their drool.

Yes pleas I’d love to hug you back

To express ourselves in love and to feel so enraptured.

Yes to trains the rails sounding places afar,

And yes to your Breath and for seeing the stars at night

And in the sunniest day.

Yes to our friendships, new and those left behind

It’s a word for childish acts immature,

And binging on everything sweet life offers in abundance

In forests and places untouched and pure.

Yes, please, for soft socks and the cradle a perfect bed where I sat

And listened to the breath of those gone and those passed.

Yes for the grace for the animal whose skin protects me now in a well suited hat made by an artisan who’s hands perfect his craft.

Yes to my family by blood and by choice who love us and us too love them all.

Yes even so a reminder of my health for the port planted in the sea of my chest

To give shelter to the ebb and flow of blood and the miracles of science.

Yes to words read of those we’ve not met

Whose brave honesty words and willingness

To open up and share with the lonely, the scared, and the sacred, no digressions.

Yes in the hope that rises and falls with each breath of our life and the breaching of death

Like a whale breaches the sea we look from ashore each tail different and each one bearing scars.

And say yes we really do care about you and we dare to answer

Our words so fewer people must feel alone with cancer.

And I can think of a thousand more ways to describe

The yes to a drink of water from the well dug by life.

Yet I say yes but not just descriptive

Of positives and smiles yes too for the victims.

Yes lets our inner shine glow and carry our boats ashore

In the ink dark night.

Too, when its my time

I must go,

And yes I won’t forget to shut out the light.

5 thoughts on “Metastatic Cancer a Look Back Through Interaction

  1. Wonderful post, Ilene. Although time-consuming, I find writing extremely therapeutic, and reading your blog motivates me to continue writing. I encourage you to continue writing your book as so many people will benefit from reading.💕

    1. It’s a very interesting exercise. I wanted to journal in my notes for my book all the comments others had made but realized the amount of time I’d put into answering comments wasn’t insignificant and it was also a retrospective in my own personal growth. Thank you my friend for being a part of that and pushing me to grow no matter how hard things seem you’re always doing more to help yourself and others. Mucho respect & love, Ilene

      1. We all push each other, every day. I love the blogging community, always willing to help and discuss whatever is going on. We make each other better and better. Love and hugs to you. 😥

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