IV: A Documentary Intervention

One of my most favorite things about the trip to DC this year for the Metavivor Stampede and METup’s Die In, was the opportunity to participate in the first public readings of IV: A Documentary Intervention. We’ve been reading the script in workshops via Zoom for the last several weeks and I was familiar with the lines.

Yet

I wasn’t entirely prepared for the emotions of reading the script in front of other people. I wasn’t entirely prepared to see and feel the emotions from the room, from the family and friends of fellow metsters, alive and dead. Not only did they get what we were trying to say, they lived the words we read.

Talk about powerful!

Our words and the emotions behind them encompass the experiences of living with a terminal illness. All of the readers the first night were metastatic. We didn’t have everyone together the second night, but students from Mercer filled in ably. The significance of people reading who 100% get every word cannot be discounted.

On 10/10/2019, Act I only was read before a metastatic and supporters audience. There were literally no dry eyes in the room when we were done and that includes the readers/cast.

Cast and students together after the very first performance of Act I. The people in this picture are some of the most amazing men and women I’ve ever had the opportunity to meet and get to know. They have changed my life. As my dear friend, Emily, says, MBC is the worst club with the best people.

I was privileged to read poetry written by Anya Silver.

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Emily Garnett read the words penned by Beth Caldwell on her blog and elsewhere. Beth’s advocacy and her exhortations to the world at large and the metastatic community framed the play and the subjects we talked about.


10/11/2019 Acts I and II performed at the Smith Center in DC to a smaller crowd, yet the impact was no less profound.

Grief anniversaries

 

https://johnpavlovitz.com/2016/03/11/acknowledging-our-grief-anniversaries/

readthisrecentlyresonateswithso. I’veofextendedfamilynot yetthoseanniversariesdifficult, no anniversaries are as difficult as those that mark milestones in my stage IV metastatic breast cancer.

My grief anniversaries are now not only fixed dates when important parts of my treatment occurred but also experiences like going to an infusion center. While I’ve not seen any studies or literature, I believe that PTSD is a thing for cancer patients and it can be horribly debilitating. Horribly.

With the holidays approaching, more grief anniversaries approach. You see, anticipatory grief is a thing too. Those of us living with a terminal disease have no idea which holiday will be our last.

That’s a heck of a lot of grief to anticipate.

San Antonio Breast Cancer Symposium 2019

2019 marks the 2nd year in a row that I was able to attend the San Antonio Breast Cancer Symposium (SABCS). This conference is the largest annual gathering of breast cancer medical professionals in the US and includes attendees from all over the world. The sheer number of languages I heard while walking around is amazing! The differences in different countries and different medical systems are highlighted a great deal at a conference of this kind and that does make talking to researchers outside of the US a little more complicated.

Yet, people are people and biology is biology.

Yes, there are some differences and one of the major themes of advocacy at this conference has been the significant number of minority patient advocates who came to address disparities. The METup annual silent vigil included signs reminding researchers to include people of color in trials.

There seems to be several different groups of people who attend SABCS every year.

  1. The first, and I think most obvious, are the breast cancer researchers. These are men and women who have dedicated their lives and careers to researching various elements of breast cancer. The most astonishing thing about talking to researchers is the often limited access they have to actual real, live patients. The patient experience, therefore, is often an overlooked factor when trials are designed. Something we patient advocates are looking to change — it only makes sense to include the people participating in the trial in the design up front.
  2. A second group of people are Medical oncologists, many of whom focus their practices on just breast cancer. These doctors are very interested in the clinical applicability of the trials. At the beginning of the exploration of various questions, the data is not precise and doesn’t clearly indicate answers that can be used in the clinics. These conferences that bring the different disciplines together spark and encourage dialogue, which then benefits the patients.
  3. Vendors that serve doctors and patients had a chance to reserve space to show off their products. Walking around, the variety was rather astonishing. Lots of things to bring back and suggest to the patients I know who might need some help. One such company had us tie ribbons onto this long rope and for each ribbon, they donated funds to one of my favorite organizations, Living Beyond Breast Cancer!

Another group donated to the Alamo Breast Cancer Foundation if we wrote our names …

4. Regulatory agencies like the FDA also came and, for the third year, the breast cancer division at the FDA held a panel discussion for the patient advocates. While there are limitations to the ability of the FDA to effect the changes that patients want, the fact that they did take the time to talk to us is vitally important. Hopefully others will follow their example.

My question to the FDA panel was when they will assist those of us with pain by removing medical marijuana from schedule 1. Hoping they listened!

  • 5. Pharmaceutical companies are also present in force, mostly just in the exhibitor areas. The sheer cost of bringing employees, the giveaways, the dinners, etc., is amazing. The only message those of us who are patient advocates would like to send to the pharmaceutical companies is that their money would be better spent sending us to the conferences. Lilly did take this advice to heart and sponsored the patient advocate lounge rather than holding a dinner and it was MUCH appreciated.
  • Some of my friends got a week deserved nap!
  • 6. Patient advocacy companies attend the conference to bring the patient voice to the conference and to bring key messages to other attendees. One of the major differences I noticed this year was the increased attendance of minority patients and advocacy groups focused on minorities.
  • Some of you know that I volunteer with After Breast Cancer Diagnosis (ABCD) as a mentor. I had no idea that they would be represented at the conference and I got to meet quite a few of them in person!
  • 7. Patient advocates also attend. Well, that would be people like me! Many of the patient advocates are stage IV but I also met a lot of early stage patients too this year. The GRASP program, which stands for Guiding Researchers & Advocates to Scientific Partnerships, involved groups of scientists, medical oncologist, and patients learning from each other. I got to participate as a mentor in this inaugural program!

While the primary reason I attend is knowledge, the most joy I get out of attending conferences focused on metastatic breast cancer is meeting and spending time with other patient advocates. The patient advocates who attend the conferences are a rare breed. We’re all sick. Many of us are stage IV. We have frustrations and many of us are a little vocal about it. We come from all walks of life, from all over the country and the world.

This year, I also had the honor and privilege of rooming with a dear friend, Laura Carfang, who is the founder and force behind SurvivingBreastCancer.org. We talked and laughed late into the night, we explored the Riverwalk with Carol Carfang, Laura’s mom who came to the conference to learn as well, and we learned so much our brains hurt!

Can’t wait to see the knowledge we absorbed translate into action for 2020 and beyond. Stay tuned, folks, it will be epic!

The Language of Respect

Today, I fly to San Antonio for the annual San Antonio Breast Cancer Symposium (SABCS). This is the second year I’ve attended and I’m looking forward to learning a great deal and meeting lots of new people. I’m also looking forward to seeing advocates and allies that I’ve met. It’s like a big family reunion of sorts.

For 2019, the medical oncologist in charge of the education track who works for the FDA in the breast cancer division, Dr Prowell, has set a goal of getting more patient advocates to attend than ever before. I hope she is successful. I think it is vitally important for researchers to be reminded of the human element. Last year, I met several who had never interacted with a real live human patient.

Dr. Prowell also created an amazing white paper on the Language of Respect for all of the medical professionals who will be attending. I remarked last year to several of my colleagues that the conference reminded me of legal conference where the lawyers would often talk disrespectfully about clients, but I was never aware of any clients who wanted to attend.

Medical conferences are becoming more and more open to patients attending and I firmly believe that that is a big benefit to the profession and patients everywhere.

I’ll be blogging and otherwise posting on social media about my experiences, but here is that excellent white paper from Dr. Prowell. It’s worth a read!

Compassion and Choices

I wrote a blog post a while back about how I believe the government needed to back off of their involvement in personal choices having to do with bodily autonomy. If you want to read more, you can access it here. I completely understand that regulations are sometimes needed and that a functioning society often requires said regulations.

However.

Sometimes bodily autonomy for individuals trumps the needs of the whole; in actuality, I wonder if that’s a truth that is an always, not a sometimes.

Being terminal has given me a very different perspective about end of life issues. I’ve been reading a lot on hospice and end of life options and whenever I see how my friends are dying, I take note of the good and the bad. It feels a little macabre at times, but I am intensely curious about options and evaluating the pros and cons of each. What can I say, research is a reflex/habit now.

When I attended the LBBC conference in April of this year and we were asked to think about projects we could complete, one of my fellow attendees chose Medical Aid In Dying (MAiD). I was interested to participate and started reading up on the options. I told her I would help since I have some familiarity with the process of a bill becoming law from my legal experiences.

And then she died.

I don’t know if her death was what she envisioned in totality because we’d only touched on our own thoughts as at applied to us personally in a general sort of way. What I do know is that she had limited choices, even if she could have made them as she declined, just as so many of us who are terminal experience at the end.

What if we treated human beings the same as we treat animals?

I’ve had two cats who had cancer. One had liver cancer. One had pancreatic cancer. Once each of them were in so much pain that they stopped eating and drinking, we went to the vet to have them injected them with a cocktail of medication that allowed them to drift off to sleep, never to awake. It was peaceful. Both of my precious fur-babies died in my arms as I stroked their fur and told them how wonderful they were. One, Samantha, was 19 and the other, Jasper, was 14. They had lived long lives and we loved them in the best way we could.

We loved them enough to make the choice that was right for them.

Why is it that we treat animals better than humans?

I don’t have a good answer and I’ve not read anything that answers the question completely to my satisfaction. It makes no logical sense to me that we let people suffer. Why would anyone want their family member to suffer? I think most people would definitively say they wouldn’t. I’ve read a lot of scary and heartbreaking stories about not enough pain medication and patients starving themselves because of the unrelenting pain. The pain and extra grief that experience inflicts on the entire family is unconscionable, in my opinion.

How is that a good idea?

To me, it’s not.

I’m also familiar with nursing homes. I had several family members of my own who we visited regularly in various nursing homes. I’ve also helped my husband for the last approximately twelve (12) years to care for his father, who has been in a nursing home since 2005 after suffering three (3) separate strokes.

That’s not an existence that I would wish on anyone.

So, where does that leave us?

Part of me wanted to simply leave that discussion until I’m imminently facing the end; however, I know that that is not a good idea. These decisions need to be made while I’m still well enough to think them through and make the best decision for me and my family. It may be that my family will want to have input; however, it is also super important to me that none of the people who love me will have to bear the burden of making choices for me at the end that may/will result in my death. Part of my legacy to my family is to communicate as clearly as possible what I want so that they merely need to carry it out. That will be hard enough on them.

So that has brought me to Compassion and Choices. I’m just getting to know the company and their efforts across the country. I’m in Florida, so that’s my main focus, but observing and learning what they’ve been able to do in other states has been incredibly helpful.

On December 17th, I will attend a seminar to get educated and ready for including end of life issues in my advocacy more directly. I’ll definitely be blogging and discussing what’s next on this topic. In the mean time, their website is:

https://www.compassionandchoices.org

The stories of patients and their families are heartrending. Each story ends in death, but death on their own terms. The reasons vary, the circumstances vary, the details vary … the one thing that remains the same is that each person faced an end to their lives on their own terms and the people around them supported that.

That’s what I want.

Community

Community is so important for everyone at every stage in life. Community becomes even more important when an illness intrudes into “normal” life or when life changes. When one does not find that community amongst the relationships or groups already in place, then the question becomes, where does one find that community.

There have been a few times in my life where I really needed community and I either found it or didn’t.

The first time I really noticed that I needed community was when I got divorced from my first husband. I struggled to find it. I think part of the issue is that I grew up in a Christian bubble where divorce wasn’t copacetic. So when I got divorced, I was ostracized by the people I thought would accept me. This scarred me, much more than I realized.

When my second husband and I started trying to get pregnant and had to go through fertility treatments, I shunned community. I kept our struggle a secret. I missed out on community. I understand now that that was not the best decision for me and I wish someone had said to me …. you need support and community will make you feel less alone. No one did (that I heard in that moment) and I felt very very alone.

The third time I needed community, I sought it out. This was related to pregnancy and breastfeeding. I found like minded people and I clung to them for dear life. There are so many times when a family experiences pregnancy for the first time and those first few months (whether it’s the 1st or 21st child) that are just brutal. The help we sought out and received was life altering and I’m friends with many of those moms today.

The fourth time that I needed community, when I was diagnosed with terminal cancer, I knew that it was necessary. I’ve gotten involved relatively slowly but I truly understand what being part of a community of men and women who understand can provide and how I can contribute.

The really cool thing is that my experiences with community and the realization that I need that community has been codified in an actual study. Some of the key take aways from that study are as follows:

“In the study, groups of 8-10 women [with metastatic breast cancer] met every week. They discussed their fear, their loneliness, and their anger, as well as their desires and their ways of dealing with the disease. They soon learned one of the most fundamental lessons in life: Everyone is wounded, to a greater or lesser degree, and has learned to be ashamed of it. In these support groups, everyone was seriously affected by disease. There was nothing left to hide. The women could speak out and share their innermost thoughts with one another.

For some of them, it was the first time in their lives they had experienced the reassuring peacefulness of such trust. Quite naturally, something of a miracle occurred then: These meetings were neither tragic nor pathetic, but tended to be filled with natural laughter and camaraderie. It was as if in accepting their own wounds, they had opened the way to positive emotions, to joy, to the desire to be alive, to the satisfaction of being together here and now.

Sometimes, of course, one of them was carried off by the disease. Then the women talked about the loss of their departed friend. They recalled her hearty laugh when she described her husband’s blunders, her watchful faze as another participant explained the difficulties of her last surgery, or the grace she maintained even when in pain. They yielded freely to their feelings of grief. These moments were very difficult, but everyone felt that the absent member would go on living in their hearts through these memories. Implicitly, they sensed that when their turn came they too would be honored by such recollections and live on in their companions’ hearts.”

David Spiegel, MD (Stanford University) & Irvin Yalom, MD (Stanford University) “Effect of Psychosocial Treatment on Survival of Patients with Metastatic Breast Cancer,” Lancet 2, no 8673 (Nov. 18, 1989) — Anticancer by Dr David Servan-Schreiber, Chapter 9: The Anticancer Mind

How beautiful of an example, that once we feel safe and once we are in community, fear is lessened and vulnerability is possible.

Where do you find community?

I get the community I need from online support groups mostly but I can’t undervalue the importance of physical contact. Hugs are super important. Crying with someone who gets you is super important. Community is super important.

Thanksgiving

Thanksgiving is a national holiday in the United States, celebrated yearly on the fourth Thursday of each November. I didn’t know that George Washington issued a proclamation after a request from Congress to recognize the holiday in 1789 but it wasn’t officially declared a holiday until 1863 by Abraham Lincoln.

What is Thanksgiving?

In the US, while it started as a harvest festival, the underlying purpose of taking time to sit back, look over the progress of the year beforehand, acknowledge and appreciate those who made it possible and take a breath, together, has always been present.

Together.

For me, Thanksgiving is about family, about being together, whether or not there is any blood relation. I’ve heard a few times that people without large extended families or when family is not close, will invite friends over for a Friendsgiving. I like that concept.

Sometimes it is hard to think about something to be thankful for when so much is dark about the world and my diagnosis, but there is legitimately always something to be thankful for and I know from experience that cultivating an attitude of thankfulness is important for many reasons.