Awareness Time!

Dear Ones,

I am part of a new community this year, one that none of us wanted to join. The metastatic breast cancer community. 

never in october

While I am new there, those here who have known me for awhile are probably aware that I start bristling as October approaches. All the shades of pink are my favorite colors, and I only get to enjoy them 11 months of the year.  

My pink is about to disappear for Pinktober. I will not support the pinksploitation of breast cancer. 

While I know very few in this new community, I recently found joy reading a post encouraging us to note all the ridiculous ways pink is abused in during October. The general reaction was angry, frustrated, disgusted, and unhappy. I’ve found my people! (on this subject at least:)

It’s pretty telling that that metastatic breast cancer community (the people who will probably die of breast cancer) are so unhappy about these campaigns. They feel as pummeled, exploited, and targeted as I. Our diagnosis is being used for fear-mongering and profit. 

Pink Abuse

I ask you, instead of buying pink, to donate (see below) to organizations that actually spend money on research that will save lives. The only breast cancer that kills is metastatic breast cancer - if you find yourself being hounded by the pink, ask! How much is going to research? What research and how is it going to save lives? Money going towards “awareness” is not helping anyone. 

It disgusts me that many of the pink and beribboned items don’t even raise money, or if they do, it is a tiny percentage of sales or a small set amount. Businesses use October to increase sales and look like they care. Please don’t fall for it. 

I get that many people love those who have had or are experiencing breast cancer. I get that they (you) want to do something to help and show support. I know that many people, including those who are diagnosed with stage 1-2-3 find happiness and support in the pink. Do you. 

I simply ask you do you with awareness of what the pink is actually for and how it impacts some of us who are livings with metastatic disease. 

Love,

~Amelia

A suggestion of a place to donate - Metavivor.org - here is there statement about research: 

In the United States, someone dies from breast cancer every 14 minutes. This number has not decreased significantly in nearly 40 years despite a huge movement to raise awareness and funds for breast cancer research. Just wearing, buying, or even walking for "pink" does not reduce deaths from breast cancer. Scientists know that research specifically focused on metastasis is crucial to significantly reduce the breast cancer mortality rate. Metastasis research is challenging for various reasons. However, the biggest obstacle is lack of funding: only an estimated 2-5% of the funds raised for breast cancer research is spent on studies of metastasis.

A Sunny D Moment

Driving around the corner on 665 in Annapolis, into the late summer afternoon sunlight the memory returned.

The feeling of coming home, being home after a long trip, it was a moment filled with a deep and powerful feeling. Add a memory of that feeling many years ago, a memory that I haven't considered deeply, I always thought it was a simply a silly story about something my teen-aged self did.

Let's roll on back to the summer of 1979. when Sunny D was a cool drink and I had only seen it in California - which made it far more special.

I was 18, I had a fast car, friends of questionable intent, and clearly wasn't making the best choices. One summer day, we decided to go on vacation. California sounded good, and off we drove from New York, four of us in my two seater car. We saw the Grand Canyon and the Petrified Forest. We got lost, stayed in a dive hotel, acted stupid, and generally had an adventure.

my 280z 1977?

Looking back from a parent's eyes, oh yea, they had every reason to be upset with us, and they were. It all worked out somewhat poorly for me. I ended up driving home from California by myself. That was a rough trip that I remember little of, I do remember the cop on a dark empty road in Texas though. He tailgated me, nudging me faster until I sped up to get away from him, and then, pulled me over, I got a ticket. I had New York plates, of course he did.

Back on the east coast, I was stranded in Virginia for a night, needing a place to sleep and gas money, in a world without cell phones, atms, or venmo.  A priest friend of a friend of my Mother's took me in, fed me, and sent me off with enough for gas and a couple of sandwiches. That last day I drove from Virginia back to New York. Another long drive, after so many others, I remember feeling so awful, even my teeth hurt.

It was early in that late August evening when I reached town, and the sun was setting imperceptibly earlier. I remember the angle of the light as I came into town, it was warm, it was golden. The sunlight was a part of the feeling of arriving home. Being home. Safely home. Home.

My thoughts were not on these big concepts, I had been alone for days and I wanted my friends to know I was back. Calling didn't seem like a good plan.

Instead, I rolled up out front of the high school and tossed all the empty bottles of Sunny Delight that had been rolling around in the car onto the lawn.

They would know I was home simply by seeing the Sunny D.



Recently in the mornings I have been thinking about how I want to feel today, instead of what I want to do today. The feeling of home has so many wonderful layers, it is warm and soft and welcoming.

I'm home again now, home is in Maryland, interestingly this memory and the feeling of coming home showed up as I arrived home after driving Sarah to college.

Home.

The Power of Friends and Meds

The Power of Friends and Meds,

Diagnosis is often a challenge and getting the specifics involves a lot of imaging. CTs, PET scans, MRIs, Sonograms, and X-Rays… so much so, I am on a first name basis with quite a few radiology techs at Chesapeake Medical Imaging.

There is a bit of a problem though.

Collision is when your body and the moving machine bump into each other. For me, this is a terrifying combination of my challenges around living in a large body, combined claustrophobia, and a fear of being trapped.

When that fear met my absolute need for diagnostic testing, I was really stuck. Intellectually, I knew what was needed, and how my fears had developed during my original experience with breast cancer.

My first ever MRI was done in 2011 to visualize the tumor in my left breast and look for other lesions. Alex* and I were in the basement of an office building next to the hospital, in a dark room, down a dark hall.  I was positioned face down in superperson position with my breasts free below me, with an IV for the contrast that would help visualize any increased metabolic activity. (A frequent indicator of cancer growth.) As the tech moved the table back into the machine it collided with my hips and terrified me. All sense, self-control, and practicalities went out the window and I was bawling. Thankfully, because MRIs are magnet based not radiation based, Alex was able to join me in the room and hold my hand. I got through the test. Barely. This was followed by a PET scan, I required Valium to get through that. Positioned properly, radiation treatment was a white knuckle affair, and there were no collisions. That one time in the MRI machine had set-up the issue and my nervous system responded no matter what my head was saying.

Back in 2016 I had made it through a CT Scan with contrast, had an anxiety attack and developed hives all over my body a day later.

2018… and the only way to tell what is happening to my body is with scans. The dental oncologist had taken the biopsies in April, however that wasn’t the whole story. To get started with my new oncologist, we needed details.  My first try with the MRI was a bust. I was triggered before I arrived and the drugs were out of my system. CMI has a high quality larger bore machine that I fit in, however I was simply too anxious. The tech also took me to try the Open MRI… that’s crazy – it is two horizontal plates and you slide between them, so there is this huge plate above hardly inches above me and it doesn’t get good images. So trauma and poor info. No thanks.

The next day I was off to the PET scan in the Glen Burnie office. I went up early for the injection – the radioactive tracer that gets deposited in areas of higher activity. Then my friend Lynayn drove me back a couple hours later for the test. Again, thankfully this test is detecting radiation not using it, so she was allowed to sit in the room with me. The tech was gentle and patient. The room had diffuse sunlight flowing in, far more peaceful and calming. The test took a long time. I counted, and counted, and counted. That plus some mild meds and company got me through it. The results – the cancer growth was visualized as diffuse and widespread. Not so good.

Then, back to the MRI, and more CTs and a liver biopsy which was a trifecta of CT scan at the hospital, IV sedation, and a really big needle (not that I looked.)

On Monday of this week I was back in for a follow-up CT. I didn't even bother to take any anti-anxiety meds, I was good. Now who knows what the future will bring, and it is good to feel like I have been able to make progress through this fear.

Doubt I will ever enjoy such testing, and I am very grateful to have had a friend who was willing and able to come along and be present and supportive.

*Alex Puma was my wife, and is mentioned in many blogs of the time period, at the time zee was known as Laura Inman Mitchell.