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.

Ascites: I am a cancer blister

Ascites fluid

Four liters of ascites removed from my abdomen – ascites fluid builds up in my peritoneal cavity 2-4 times a year

Stanford Cancer Center

Setting up for the periocentesis: some local anesthetic, an incision in my lower right abdomen after the ultrasound.

Periocentesis

Getting the tube placed for maximum drainage it’s inserted in the safest place to avoid punctuation of my intestines.

Periocentesis

Getting the first draw for the lab, then gravity does the work into what looks like little beer kegs.

I first experienced ascites when I was diagnosed with metastatic breast cancer, de novo because of dense breasts.

It’s been:
3 years
7 months
22 days
5 hours
55 minutes
32 seconds
to be precise since first having 7.5 liters of ascites removed and the reason I showed up at the hospital about 15 pounds heavier than my usual weight, barely able to breathe, unable to hold down any food and scared as hell.

Prior to that first visit I’d been delivered to the hospital once, when I was born. Quite a different story 49 years later. Since the first periocentesis to remove the cancerous fluid, I’ve blown up like an oompah loompah seven additional times, including this last time illustrated by my clandestine photography here.

This is what metastatic breast cancer looks like. Not on the days when I am trying to make everyone believe I’m okay. It’s not that I mind looking like I don’t have cancer for the most part. But I don’t put my makeup on every day to prove a thing to anyone but myself. I push too hard most days. Never will I learn to take it easy.

Sleep is for the dead. It’s 5 am. I’m still awake.

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.”