That Darned and Blessed "New Normal"

 
Dear Ones,

Rest, with supervision.

I'm feeling so much better, and learning how I need to live with metastatic breast cancer, well at least how it works for me at the moment. If you are curious, my updates follow.

So so medical info - from a recent CT scan (that was relatively anxiety free) no new metastasis, and even better healing to my bones, that means that the treatment is working, the cancer has been significantly diminished in my body. From blood work, my tumor markers are 25% of what they were this spring, my circulating blood calcium levels are in normal for non-mbc people range - high means that bone is being broken down by the cancer, and my liver numbers are all good. The remaining challenges are fatigue, shortness of breath, and my immune system continues to be challenged by treatment, so my blood counts remain low and I am at a significantly higher risk for infection. That means I have landed on antibiotics a bit more than I would like, and for me, that option feels smart. When I was wracked with teeth chattering shivering with a fever under 101, yes to antibiotics.

Better than the medical info is the fact that I am getting to find my life again. The new normal looks a bit different, and that is ok, it's another transformational opportunity (she says with a whole lot of sarcasm.)

Skidmore Views

Two best parts of October were getting to Saratoga Springs to see daughter Sarah and to Florida to see mom Carol and be a part of step-dad Dick's Memorial Service.  Sarah and I shared a small Airbnb near Skidmore for a few days, I got to take her out for good food and to Target... many times. Getting to see Sarah, enjoy her wit, insight, and interests was a treasure. It's funny, I do miss her, yet she has landed so soundly, that I am not worried, that takes away so much angst. I love downtown Saratoga, I got a small tour of important places at school, we had crepes and ice cream, slept late and enjoyed the distinctly non-autumnal scenery.

My heart was full, and then I joined Sarah at her riding lesson. This is one part of her/our life that I have really missed. The barn and the time together, watching her lessons, being proud even though I really don't know enough and think she is an amazing rider as long as she is on the horse's back. She remained mounted for her full lesson, on a big goof of a chestnut warmblood, of course he is a chestnut! It was a special bonus to a wonderful visit.
 

The memorial for Dick was beautiful and full of love. Ellen Sloan, rector of St. Michaels gave a beautiful homily capturing Dick's personality and heart so well. Carol caught me by surprise minutes before the service when she told me that Isaiah 55:6-11 which I was reading for the first lesson was what she read at my father Mike's funeral in 1978, can't say I remembered that! Carol and Dick chose to move to Sanibel, and then Ft. Myers in the early 90's so that they could fully become members of the community. They found their people, they created a wonderful life, with connections and value, service, and faith. Dick's memorial was a wonderful vignette of this life.

Sarah and one of the many pies

Thanksgiving was a low key holiday, Sarah was home, we made a lot of pie and I managed to come down with Bronchitis right as she was recovering. More antibiotics and coughing for a month now. And hey, I'm ok with the trade off of suppressed immune function and health.

My sister Polly and brother John have been working so hard getting Carol downsized, packed and ready for her move to assisted living at Shell Point. I wasn't able to help much, another frustrating new normal. Polly and John busted it out and maintained good humor and I sent a lot of goofy texts and listened to the challenges. I can be of support. 

Amelia and Carol at St. Michael's in October

The last few weeks have gone so quickly. Carol moved to assisted living at Shell Point Village and that wasn't as smooth as any of us would have liked. In the midst of Bronchitis, with no voice I was advocating, soothing, and problem solving. What I really want to know is when I will get paid for all the staff training I seem to provide for so many organizations? Because I will call you out, and I will also engage in the conversation about how to do it better. Carol is settling in better and getting the care she needs, I am hopeful and prayerful that this will all be good in the long run. Her 83rd birthday is Christmas Eve.

Last weekend Sarah's suitcase went on to Sacramento when she got off at BWI, she's getting pretty good at travel adventures. This week, she and Becky were up in NYC and Sarah managed to get a cab, in midtown, at rush hour, in the rain. That's no small feat, I'm dang proud of my girl. Unfortunately their ride home involved a lot of delays and bus changes, they were troupers with just a wiff of bus bathroom. There's a metaphor here, I'm not going to go looking too hard for it though.

I love Christmas, decorating, making gifts, cooking, and connecting with family and friends. Mostly I'm lowering my expectations some more and being gentle. The tree is up, its naked, and there are no outdoor decorations. Shopping is done, low key plans are in place. I know its ok, and these edges do make me sad. I'm praying for some productive sewing this weekend, if not like last year when I made the Fab 5 and all the Fivelings hats after designing custom fabric, maybe a small quilt and valences for the living room?

Cancer as a chronic illness, mortality, what matters, what I love, all of this is present in my moments. This is Christmas, and I feel the sadness and don't always need to reframe that to gratitude. They can coexist, along with anger, frustration, and awe.

I am glad to be here and to be able to write about life. I'm not done yet, not by far.

With love,
~Amelia

Took Me a Moment

It took me more than a few moments to wrap my head around the news I received from my
oncologist recently.

No more mammograms for me... After seemingly a lifetime of breast smushing, with all the associated pain, anxiety, and dread, now all of a sudden I don't need to do it anymore.

Statistically, the breast cancer is not going to show up in my breasts anymore, so there is no need or value to getting mammograms.

Now, if only I can get through to the people who run all the online medical portals that I have to interact with, the portals that constantly remind me that I need to get screened for breast cancer... That part of the system is simply heartless and thoughtless in their eagerness.

But I digress, today I will allow for this change, and simply be glad that I no longer need to have mammograms. A bit of a letting go...

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.

Carrot Juice and Untangling Self-Responsibility

Carrots that have grown intertwined.

The noise that juicer made was enough to wake the neighbors, and carrots came in 50lb. bags, all to satisfy Mike’s desires to make the best possible choices for his health.  Juicing was one of many paths he followed as he read Prevention magazine, bought supplements, followed eating plans and diets, turned slightly orange, attended EST* Seminars, and listened to the gurus of the 1970’s wellness cults.

Some of this was certainly focused on weight loss, and that he did, over and over and over. Diving into that is fodder for another time. Today what I want to play with is the concept of our personal responsibility towards our health, and how I have stepped away from the direct cause and effect model that sells so many dang worthless books.

Back in the 70’s Mike was lead to believe that he was personally responsible for making the right choices, and he followed the rules, so many of them. Forty years later, as I share my diagnosis, I heard from someone talking about a book that describes a plant based diet. They have been following it roughly for many years and remain healthy and “have never missed a day of work.” Others have offered medical advice straight off of Facebook, Oprah, or the local news. So often there is an “expert” telling us how to eat, what supplements to take, or some other strict prescription of behavior that if only you follow it correctly will make you a new, wonderful, sexy, healthy person. Have you gotten caught by any of these promises?

The dark side is that I see clients and friends berating themselves for eating sugar, or not eating enough veggies, or being too stressed from taking care of kids and parents while dealing with an auto-immune disease. People who have come to believe that any “wrong” move could spell disease. (No, I won’t spell it dis-ease dammit.) People who are convinced that making healthy choices is a moral imperative.

Mike Toombs, 1976

Mike died in 1978 of pancreatic cancer, by the time he was diagnosed it had metastasized to his lungs and liver. Many of the get well cards he received during the very short month between diagnosis and his death were from EST friends who encouraged him to think differently and be different, to “get over it.” They we telling him that he could think, live, and eat his way out of pancreatic cancer. To be frank, miracles aside, that was bullshit, the man was actively dying from a cancer that kills 80% within a year.

With such an extreme example, it is easy to see how off the well-meaning advice was. How much more compassionate it would have been for those friends to connect and come sit with him. They could have prayed for his comfort and ease, or simply sent flowers or a differently loving card.

Mike was my father, I was 16 when he died on May 11, 1978. 

Mike and daughter Amelia, 1963

Clearly, I grew up steeped in this belief system, I was told over and over how I had the power to transform and change my life. This belief fit well with the Yankee sensibilities of my ancestors, and aligned with the so common self-realization, "by the bootstraps" narrative that ignores gender, genetics, history, race, ability, sexual orientation, socio-economics, religion, and more. Yet it was the truth as far as I knew.

I had attended EST seminars at 15, so I also knew I needed to focus on being here now, and If only I made all the right choices, I would find success in all aspects of life, love, and career, while my body would be healthy, slim, and fit. As I moved into adulthood, I was attracted to many of these same messages from the Human Potential Movement and read lots of personal growth, health, and healing books. 

I don’t question or regret any of this. This is a small peek into my life and these experiences have informed me. Because I have such a long and rich history with it, I have had a chance to consider how it is working. Some things work really well, a lot of others, not so much.

These days, I am acutely aware that some with a similar background would find the cancer now wandering in my bones to be something that I have brought on myself. Now, people are polite, I might not hear that directly, I do know that it is considered. Well… she could have lost that weight, you know, cancer and weight. Or maybe if she took these supplements… or perhaps her emotional life, or anger, or sadness, or fill in the blank… Perhaps if I was more present or conscious, I would not be having this experience. 

 

You know what? I think that is bull - all this blame and fault finding with expectations of perfect health. All humans have value, and all are entitled to live their best life. Not everyone is guaranteed health which is not a personal gift or failing. Perfect health, perfect life, and death in our sleep at a ripe old age is not real. Whose life works this way?  

What does work for me, is the knowledge and experience that I have options around how I respond to life’s circumstances. How I respond will often change my experience. This is where so much of the ideas around positive thinking really do matter. In this moment, I can watch the rain coming down and enjoy the sounds and softness. Or I can rail against the never ending rain and be mad. This is my lane, this is my responsibility.

Beyond that much of our lives is actually beyond our control.  Our health, our experiences, the people and places that influence us can almost seem random. Why does one coal miner develop black lung when another who worked side by side for 20 years does not? Why does this college campus feel right to my daughter when a dozen similar ones didn’t? Why did your eyes meet a stranger’s that day, the stranger who is now your spouse?

The best explanation I am aware of is called Prarabdha Karma. This is not the basic cause and effect stuff. This is about the lifetimes of our soul journeys, it is about living as ourselves in these bodies and having the chance to learn and experience many different aspects of life. I personally believe I was a part of making some of these choices before I arrived. I am also completely ok with the thought that the divine has set things up for me.

When you look around at the billions of us, even those who are living similar lives will often have different challenges, different joys, and vastly different experiences. How does that all happen? Prarabdha Karma.

Which seems like a conundrum.

Can I change anything? Yes.

Do I have the ability to affect my world? Yes.

What control is there? Lots. Especially in my choice of response and willingness to experience what is showing up.  In any given moment, I have some level of control to choose my response.  

One piece of truth I have carried with me for over 40 years is knowing that I have made the best possible choices in the moment. That does not mean I have not made mistakes or behaved badly, it is simply a surrender to the understanding that I did my best in that moment. I also trust the same for everyone else.

Sitting here today, I am not questioning that I came to be living with metastatic breast cancer. I continue to notice and let go of the healthism and judgment that I find sneaking in, and find it helpful to discern whose voice is speaking those old ideas. (I talk back.) My body is what has brought to and carried me through this lifetime, and my prayer is for the opportunity continue that life for quite some time. 

While I am here, I may drink some carrot juice, or a milkshake, read medical studies, even incorporate new information, movement, rest, or meditation into my days. Why will I? Because it feels right, because my body or soul is asking for it. I will make those choices through presence and attention. I find such choices more supportive and congruent to living the life I desire. The life that I understand is less about controlling and doing it right, and far more about allowing, accepting, connecting, and rejoicing.

*est or EST – Erhard Seminar Trainings which "brought to the forefront the ideas of transformation, personal responsibility, accountability, and possibility"