Ashes to Ashes

Radiation in my beggar’s

Bones all lit up

By a lantern flame

Flickering like a firefly

In a canning jar.

I stand around the ash can

To warm my hands.

Sipping bitter coffee

Waiting in ragged flannels

Shivering like an

Old alcoholic waiting

For a hand with my

Next drink.

Don’t worry this

Helps with integrity Believe in the beams

Words like Fractionated

And decisions like tattoos

Are stolen from real

Life I’m in a propaganda

Movie. Before the main

Attraction. But it’s all fiction.

All lies.

10 treatments on the spine in a row

Please leave me alone

I never knew such exhaustion existed.

Offers of investigational higher dosage per day will get rid of it – a higher risk yet I fail again

And crumple at the criteria.

Unfit for a trial,

The royal “they”

Refuse to take a risk on me.

Back to the war on cancer I turn

My body over to

Real criminals

The 8mm films of

Nagasaki and Okinawa

Bikini atoll

White Sands desert observers

All turned inside out

Dying of cancer

Years after the

Photographs turned

To negatives

Where the darkness

Reigned supreme.

Is this only a stomach ache

Does my headache

Mean anything to

Those pictures

A science of an

In exact nature

Looking for snowballs

In hell.

No scarring and burning

It’s deep and linear Acceleration radiation

But upon waking up from

A dream I scream

Silently as the fallout

Covers statues with

Dirty ash. My foggy thoughts of wakefulness Interrupted by exhaustion

Drops me into a dream

And my beggar’s bones

Standing around the ashcan

Where all the incinerated go.

Fear of Happiness and the Nuclear Bomb

Happiness. It’s not found in nature – do bees, birds and skunks seem happy or just carefree? Perhaps there’s a powerful connection between freedom and joy. When we find ourselves free from major responsibilities we find peace easier to come by. After the following came back from my CT scan report I found my mood became less jovial and more edgy. I’m afraid of the protocol for hopefully solving this latest tumble down the rabbit hole of metastatic breast cancer:

“New moderate focal uptake within the L4 vertebral body concerning for progression of osseous involvement from PET/CT 4/12/2019. Diffuse sclerotic osseous lesions are otherwise not hypermetabolic.”

My CT Scan Report

I begin radiation treatments Tuesday for the tumor on my L4 vertebrae and in all the treatments over near 6 years since diagnosis, I’m afraid. But so many people have had radiation and come through just fine. Why such a fear of a very common treatment?

My fear of radiation began long ago in my childhood. After much soul searching into why the looming treatments scare the crap out of me I arrived at several interesting conclusions about the connection of fear and happiness.

We age and as we doubt our own hopes making the world a better place- it becomes simple. It’s a risk to take redemption to begin to see the hope where we can see darkness in the forest instead the earth calls us to see its light.

I think back to picketing against McDonell Douglas‘ huge multi billion dollar contract with NASA for what would become part of the Star Wars program begun by President Reagan’s administration. We held up our signs against nukes, U2 blaring in the car on the three hour drive home from NASA In Satellite Beach to Miami Beach – “Bullet the Blue Sky” was the song coming from the speakers in my dad’s old Celica. That song and it’s ominous countdown are etched into my memory, as are the chants of “We Shall Overcome at the end of the protest.”

I remember seeing pictures and documentaries on nuclear weapons and I think my ingrained fears about radiation causing cancer has kept me from utilizing this protocol until now.

In my dreams

I see my father in my dreamscape standing in a cool forest as I run to him not as an adult but a child. I’m afraid and I’m screaming, “no daddy! no not the bombs not the burning bombs!” Just in time I reach him before the blowback reaches me like you might have seen in film of the Bikini Atoll atom bomb tests. Then he gathered me up in his arms like a baby and we fly up without any propellant. He whispers something I cannot recall before he deposits me in a nest and disappeared leaving me safe but helplessly alone.

Is there ever going to be a time when my cancer doesn’t leave me alone? Alone in both senses of its meaning: isolated and diseased. This last week my friend told me that a relationship I’d hoped to develop wouldn’t happen. The friendship will end before it begins. She’s lost too many people to cancer in the last several years abs she cannot deal with more pain.

Where’s my happy place?

I feel okay. I have no idea when I will die. But I do know this – I also have enough on my plate but not enough human interaction- have we all gotten so used to isolation because of the never ending Covid lockdown that we will become used to doing things anonymously and alone?

I hope not, I have some frightening days ahead of me. It’s too bad I scare people away from my life just because of metastatic cancer. But her honesty is appreciated. At least I know why I haven’t seen her in six months. What’s everyone else’s excuse I’ll probably never know. Not my current friends, few though they may be, but all the ones who disappeared and left me on my own. I know they read this blog. I hope they know how afraid I am now after nearly six years of treatments.

Will I find myself in a happy place again? Or will happiness become like my mother coming into my room at night seeing my light inside. “Put the boom down and go to sleep!” Connecting fear to fun our parents do their best for us but etch away at our carefree souls for our own safety at a young age.

We thus begin to avoid risks and take fewer chances. As we get older and our responsibilities and the depth of our love becomes more important we take less risk, more work and find less fun offerings in our day for fear we cannot meet our obligations.

Do you see where I’m going? Certainly you can relate to what I’m experiencing now and what I experienced as a child leading to fears I couldn’t relate to pinpointed events until my dreams ripped a hole in my own time space continuum.

Meanwhile wish me luck.

Good Doctors Listen

As I sat in my oncologists office last week a young first year resident entered the exam room. I was not warned by my oncologist’s nurse – very unusual. Yet I was not worried to see him either, since my oncologist certainly wouldn’t put someone in a room with me who wasn’t capable of good quality care.

The resident began his questioning and went through all my medications asking why I took certain things and who my primary care doctor is. Yet each time I would begin to give him an answer, within 3 to 6 seconds he would interrupt me and put in his $.02-$.10 worth of self important opinion-based advice. After about the seventh question I got kind of annoyed. He clearly hadn’t read my chart before he came into the room. He had never seen me before and didn’t know anything about me as a human being or my condition – I was just another generic cancer patient to him. Just another face In an exam room. Just another woman with metastatic breast cancer. And then immediately without really knowing the extent of my relationship with my oncologist he began questioning my current protocol – and making treatment suggestions.

He then pulled up the films of my last CT scan with contrast. Why he thought this was even appropriate is beyond my understanding. But I think it was also to clarify his understanding of where I was at before my doctor came in because again, it was obvious he had not reviewed my chart, which is something I can’t stand. Just as he was starting to review my last films, “okay I’m going to pull up your scan and show you what you look like inside.” (Had I accidentally gone to the children’s cancer center?) My discomfort grew. He had nothing to compare this scan with and no history with me at all. the following occurred making me not just uncomfortable but slightly angry.

Sometimes the filter between my brain and my mouth goes on holiday. It took a brief trip at that moment.

Clearly he knew nothing of what kind of patient I am and he didn’t understand the style of relationship beteen my oncologist and I. Just as I said the following sentence, “you know statistically most physicians wait an entire 13 seconds before they interrupt the patient. You’re waiting merely three seconds. I suggest you at least give me the full 13 seconds of listening while distracted by the computer before you interrupt me.” His mouth was agape with the audacity of my comment. Don’t you just despise when someone asks you a question and then doesn’t even listen for or to your answer and then begins talking over you?

The moment I said that Dr. B walked into the room and started laughing. He’d heard the comment that I made and proceeded to correct this young resident and told him that I was an unusually well informed patient: the kind of patient who understands their illness and that he and I both worked on my treatment, not just him. And that interrupting your patients is not a good protocol at all. The resident continued to bring up my films and Dr. B said please shut the screen and let’s ask Ms. Kaminsky if she would like to review the results before we just pull those films out. It might not be a good time for her and we should find out if she wants to talk about that or not.

Of course I wanted to talk about it and he knew that. We had already had a conversation via email reviewing what the appointment would entail – we were going to talk about the films and what the next steps were going to be because apparently things were not looking as good as we’d hoped. The resident sat quietly after that and he listened to our conversation. He did as Dr. B instructed, pulling up things on the computer screen when asked to and was quiet for the rest of the rather long 90 minute appointment.

The rest of the conversation when something like this. I asked Dr. B weather xgeva was the right medication for me to be on for so long because it was taking a toll on my bones. He said that was something we should definitely look at and I asked about a new substitute medication that’s also delivers bone support I had read about in a study. He had read about the same study although neither one of us could recall the name of the medication and I still haven’t looked it up because he’s going to do all that legwork for me or at least have the resident do the work. He will get back to me on that one.

Next we talked about what the CT scan showed and it turns out that I have a growth (can’t we just call it a tumor, which is what is) on my L4 vertebrae that is going to require something different. And we were both certain what that would be. I said “Dr. B I think it’s probably time we look at some radiation.” He retorted: “why do you always jump right to the end of the conversation and spoil all the fun?”

We laughed again. The resident didn’t laugh – he cocked his head like a dog who hears his name from his master.

Now that’s funny.

But indeed I had a hunch for that day’s outcome, since my lower back had hurt more than usual. It’s always given me trouble in the past, but this time it’s different and the pain is different.

I know the only real course of action is radiation therapy. It’s pretty standard procedure for these kinds of tumors. There will be a tattoo of a few dots on my back. My mind races to the reward of another tattoo after the treatments are finished. There’s one waiting for the scar on my right 1/2 a breast of a bird on barbed wire across the scar.

Any ideas for the dots on my lower back I’m taking suggestions. Snag a permanent place on my body with the best answer – and it cannot be a tramp stamp or a follow the numbers dot puzzle.

No paint by numbers either. Get creative and you’ll also receive a free copy of my book whenever I finish it. Gogs Gagnon’s book re-inspired me to hit the pages again.

Thanks to you, my readers and my friends for suffering through yet another day in the life of a metastatic breast cancer endurer (borrowed from Rudy Fischman who’s VLog The Brain Cancer Diaries which is worth any of your limited time. Start wherever in his series you’d like it’s non linear in a way since he interviews people with all kinds of cancer and doesn’t just hack on about himself. I think found him on YouTube around episode 10 and went back to the beginning – he’s at https://www.youtube.com/channel/UC1_GCferA7W2dr5WVP2rq_w)

I like endurer better than survivor. We aren’t going to survive our cancers but we do endure.

Indeed we do endure a lot.