Today’s Cancer Prognosis: Stable with a Chance of Bone Storms

At a 50% failure rate, a meteorologist is the only profession in which one can keep their job being incorrect in about half of their prognoses. Or so the old joke goes. It’s not easy given climate change, a man-made shift in the earth’s ability to stabilize its temperature and its weather conditions. Pollutants and the release of chemicals into our environment likely also caused such a surge in the number of cancer cases to 1:2 in 2019.

Granted with the benefits of research in the medical and pharmaceutical industries, there’s an overall increase in survival, and in profits. Just as new industries form around global climate change so have they around cancer. In both cases there’s a lot of guess work and trial and error, or trial and success, if I’m to exude optimism.

The tumors in my body exist mostly in my skeletal system. My breasts are no longer the main problem but the culprit of the metastasis that someday can kill me. My once-beautiful bones, the bones that never broke, the teeth without cavities, the entire organ structure has kept me upright at 6′ 0″ without shoes for nearly 55 years. My bones now look something like sloppily cut Swiss cheese with rough hewn pieces of screen where they’re healing from mass murdering, distant traveling breast cancer.

Bone metastases [can] also increase the chance of a fracture in the areas of bone which are weakened by a tumor. When a fracture occurs in bones with metastatic cancer they are referred to as a pathologic fracture. Pathologic fractures may occur with very mild injuries. In addition to predisposing to fractures, bone metastases can make it difficult for fractured bones to heal.

(https://www.verywellhealth.com/bone-modifying-drugs-for-cancer-with-bone-metastases-4153981)

The prognosis has improved for those with stage IV breast and prostate cancer with two forms of treatment. The current protocols include pharmacotherapy for sporadic, distant metastases and radiotherapy either by pill form or by laser targeting specific sites of pain or major concern.

Can you tell me where it hurts (on a 1-5 scale?)

It’s the pain that’s got me vexed. Realize with holy bones, always in the process of ravage or of healing, that’s only to be expected. They hurt in a way I can’t describe. I imagine it’s akin to having a broken bone but maybe worse. Having never experienced a bone fracture or break, the best parallel I have is my horrible growing pains as an adolescent. Standing 5′ 7″ by 13 years old I peaked after 10th grade at 5′ 11″ growing one more inch up to 6′ at 17.

Tall. You can definitely say I’m tall. I was always the “tall girl.”

I lost 1/4 of an inch since my stage IV diagnosis. With that 1/4″ went part of my physical identity. No longer can I truthfully say I’m 6′ tall, but I lie. I lie on my paperwork at the doctors office, and at the Department of Motor Vehicles. And I’ll lie when I renew my passport in a few weeks.

I’m a terrible liar. But I cannot give up anything more to cancer. It took and continues to rob me of so many things. Why should I allow it to take another part of my identity? What would you do? Would you call yourself 5′ 11 3/4″? It’s kind of a mouthful and it’s negligible. You’d probably not even notice if you knew me in the non-digital world.

It’s probably not going to make a difference to anyone but me.

Yet it’s my identity at stake even if it’s just a little bit of me. But bit by bit, if I allow it to, cancer can take over my entire life. It’s taken so much but it cannot take away my ability to “stand tall, shoulders back, head held high,” as my mom used to tell me when I was growing up.

I never wanted to be the “tall girl” then, but I would give anything to take away that peer-induced self-consciousness, causing me to slouch my shoulders forward to make myself seem smaller. But there is no hiding height.

Now I stand tall. My dignity is at risk now more than ever. I’m not at the school cafeteria-cum-dance hall, being passed over for a slow dance by a boy I had a crush on in 7th grade (where is John Fried, now?) who was 2″ shorter than me. The songs that I never danced to with a partner, but quietly sang with my girl friends on the sidelines waiting for ABBA or Patti LaBelle. I waited out Sail On” by the Commodores, “How Deep is Your Love,” by The Bee Gees, and my favorite, “Just the Way You Are,” by Billy Joel:

Don’t go changing to try and please me you never let me down before …

I need to know that you will always be
The same old someone that I knew
Oh, what will it take till you believe in me
The way that I believe in you…

I am that same old person somewhere in here…in a body changed by cancer. It’s kind of like the weather. It’s warmer now than it used to be, but it’s still the earth I always knew, where gravity hasn’t stopped holding my body to the ground although there’s a storm brewing somewhere no one can predict. Not my oncologist and certainly not the local meteorologist.

Breast Cancer Now’s Interview with Karin Sieger

karinsieger.com/interview-karin-sieger-breast-cancer-now/

Truthfully, I love Karin’s blog, her no nonsense philosophy, her podcasts – yes, that’s plural. She produces not one – but two podcasts, not just on coping with cancer but life in general on Soul Cravings. Both can be found in her eponymous blog. If you’ve not read or heard Karin, she gives advice through example using her experiences to show, rather than tell you how she’s coped, what she’s experienced having had two cancer diagnoses herself, and what lessons she’s learnt both in her own life as well as through the personal stories of others.

I’m lucky to have found Karin and gotten to “know” her through her voice and her support of my blog and my post diagnosis emotional well being. I adore her tenacity and the fact that she does all of this on a boat afloat the river Themes. Whether you personally are effected by cancer in any way or even if you’re not (unlikely given the number of people diagnosed and the extension of our diagnoses to friends and family, you’ll find something to pertain to you and those you love.

Once you tune in, I think you’ll understand why I’m a fan and a friend. This podcast, albeit one not of her production but very much of her making, in particular is close to my heart because of her candor and her no holds back style although the spotlight has turned to meet her – so take a listen. Thank you Karin, once again for the effort you put into what’s clearly a labor of love. And I love her for her generous soul. We should all crave to have a soul like her to guide us gently out of the dark corners cancer can lead us into.

Crossing Lines: writing eases the loneliness of disease

It’s time to take it up a notch here on the Cancerbus. I’m now four solid years into blogging and my fifth cancerversary since my metastatic breast cancer diagnosis in March, 2015. Naturally for my personality in order to write this blog with more rigor, I’ve turned to educating myself.

One educational direction is through other people’s personal essays. I’m also reading up on how to touch more people through engaging with the cancer and poetry community. As a result, I’m commenting more often other blogs I read. It’s a risk to be certain, and as such, I step on my proverbial tongue at times.

When I write up a post, my somewhat warped sense of humor percolates up, and any self importance sinks down in the word stream. It’s the part of the art, the crafting of the essay about a weighty topic as cancer is, to create a tone that’s conversational feels right to me. The tone of my blog probably appeals to some and not to others because of the no-bullshit, non-pinkified, lack of “let’s all sing Kumbaya .”

It’s authentic and it’s my story without flowery effluvium, little self pity, and I hope no need for sympathy. Words either flow or they don’t. Blogging isn’t easy. Responsible for my truth, it’s also not for the purpose of emotionally abusing my readers. If it’s purple and persimmon pretty sunsets you want, you arrived at the wrong web address.

Perhaps too late and impervious to the needs of other bloggers I’ve committed a faux pas or two by commenting much in my same voice. To write otherwise would feel disingenuous. The endangered species of the personal narrative co-exists awash a sea of me-too.

Comments bubble up from the dark waters of “atta girl” and “you got this” and “how beautiful (sad, unfortunate, wonderful) your situation.” The depth of commentary reveals the time a reader takes to try and comprehend even my more lachrymose posts without turning away. My goal never included becoming the most popular or beloved. Instead my decision seemed right to me: to cobble together the rough stones down in a path to the truth of grief, death, side effects, the pain and it’s remedies, loss of love, family and friends, arising from a disease and it’s discontents.

Sometimes it’s a very difficult path to lay. Even the photos can become hard to look at but harder to turn from looking away as in my post: Bone Deep: the painful reality of metastatic cancer.

Context for content(ment)

Recently after commenting on that post, of which no background for what despair this person had come to at the end of their treatment options. I felt near obligation given the missing history of the persons metastatic cancer and what treatments they’d previously endured. My heart sank as I felt them giving up hope. I could only empathize with the information written with no kind of link to a previous post of their journey. Generally I shy away from using the word “journey” in relation to MBC, the word most used by kinder, gentler blog writers.

My contextualization of metastatic disease co-mingles help in two ways:

  1. Plain, black and white discussions of all the experiences from the ugliest fleur du mal to the most heart felt and touching so there can be a personal connection between us – you and I, subject and object, reader and writer. Whether or not the reader had or has cancer should not matter, since it’s the experience of the human condition in which I strive to participate not only of terminal illness.

  2. Easing the loneliness among my sisters and brothers with metastatic cancer has always been the goal of starting the cancerbus.com. It may not help all readers. However given some of your encouraging commentary, your words fuel my desire to continue week after week.

Alone or lonely?

There’s a peace in solitude yet an anguish in loneliness. I suppose the imposition of solitude with cancer feels the loneliest of all. At that very moment you need all the support you can find, you find yourself isolated even in large crowds. No one can understand whose life is without disease. Dis-ease. Taken apart the word disease explains exactly what causes our loneliness. It’s not being at ease in our own bodies turned against the souls who resided within.

This is why I write, to ease the loneliness of metastatic cancer. To find kindred spirits out in the ether. And so that said, if I happen to meet you through your words probably written for much the same reason, please take my comments as they’re meant. A way to reach you in your writer’s space from one mind to another and sketch you a hug in the way that I’m lucky enough to find comes easy to me.

I’ll write you a love song to celebrate our lives, together yet apart. We have more than disease in common. We love life and want to hang on as long as possible, with those like ourselves who have death beating down our doors. Perhaps with more strength of numbers it can’t get through quite as fast, since loneliness creates a weaker immunity and allows our disease to win over our minds and not just our bodies.