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.

Am I really making a difference?

Translating the world of living with a terminal illness to the world of the healthy is fraught with pitfalls and odd experiences. Language and details that I’m so used to now feels like a foreign language to healthy people. Yet, despite all of the talking and blogging and sharing articles about how to talk to someone who is dying, I still have inexplicable conversations.

For instance.

A few months ago, I wished someone a happy birthday or something on LinkedIn. This is a person who I knew generally, professionally, but not well personally.

Her response was …. “I hope you are well.”

I sat and looked at her message for a bit. I think I talk about living with a terminal diagnosis an awful lot. So much so that sometimes I do try to dial it back, to not constantly remind people that I’m dying. And then I realized, I haven’t gotten through to everyone.

So, I responded … “well? I’m dying of Stage IV metastatic breast cancer and I will never be well. Think about that in October and think before you pink.”

I was actually rather proud of myself because the first response I drafted in my head was not nice, full of profanity, and had lot of questions that were probably not fair to ask this person. I didn’t send that one. I tried to think hard about who this person is and how little she knows.

Her response? “I’m very sorry to hear that your health hasn’t gotten better.”

Wtf. Literally, wtf.

I just said that I’m terminal, that I’m dying and this is the response? I’m desperately raising money and pressuring people around me to give to the right places and dealing with a whole lot of pain and medication and doctors and she’s surprised that my health hasn’t gotten better?

Sometimes, when something like this happens, I wonder if I’m making any kind of difference with my advocacy. I meet people every day and talk about metastatic breast cancer, I’m used to working hard to educate people. But sometimes it feels like all I’m doing is talking to myself or the people who already know.

Clearly, I’m not as effective as I’d like to be.

So, dear readers, help me. Give me ideas. Tell me what else I could be doing.

I don’t want to just speak to the converted. What should I be doing differently??

Stop Comparing!!

A little while ago, during the month of Pinktober, Rethink Breast Cancer shared this meme on Instagram.

The mission of Rethink breast cancer is embedded in their name, for people to rethink what breast cancer is and, if I’m allowed to extrapolate a little, to think beyond the pink fluffy stuff touted by the pink machine. They meet that mission in a variety of ways, including sharing factual information like this meme.

There are a lot of memes like this that many of us living with metastatic breast cancer share regularly. I do understand that some of them are shocking. Some of them are designed to be shocking. The shock factor should never be underestimated in terms of making a difference; it often jars people out of complacency.

However.

For purposes of this blog post and my urging for people to stop comparing, the meme is not the story, the comments on the meme are the story.

At first, after the post went up, a few early stage survivors started commenting, talking about how the meme was shocking, that it made them uncomfortable, that they didn’t want to be reminded of their own danger of becoming metastatic. Some of the comments also contained an effort by the same women attempting to share their own experiences, that they too have been indelibly marked by their experiences with breast cancer, that their ongoing side effects have changed their lives forever and that scaring them isn’t accomplishing the goal of recruiting allies.

And then some stage IV women jumped all over them. Minimizing their experiences and shaming several of them for speaking up. Sometimes directly and sometimes covertly, many of the stage IV women objected to early stagers comparing their reality to the reality those of us with Stage IV live in all the time.

I’ve written quite often about how I feel ignored and sidelined by not only the charities focus on early stagers only but also how many in the breast cancer community who had/have early stage breast cancer are antagonistic towards those of us who are dying. My experiences, while not universal, contains some themes that resonate with many metastatic patients; for instance, the often significant divide between early stagers and those of us who are metastatic.

I don’t write about these things to shame anyone but to bring awareness and to hopefully encourage everyone to do better next time.

What hurt my heart about the exchanges in the comments on this meme on that particular day was the decided lack of empathy and compassion on both sides. Comparing does that. To compare your position to that of another person is literally preventing both parties from fully seeing the other person’s reality.

Are the experiences of metastatic patients worse? Maybe.

Is it horrible to be dying and watching your friends dying all around you? Absolutely.

Is it horrible to have your life upended? To no longer recognize yourself in the mirror? Absolutely.

Do many of the early stagers experience the same side effects as those of us who are metastatic? Yes!

What drove these points home for me was a public exchange in the comments between two friends of mine. These women didn’t know that I know both of them and I wasn’t planning to insert myself into the discussion until I saw one of my metastatic friends comparing the experiences of the metastatic patient to my early stage friend’s attempt to show how her life has been indelibly impacted.

Both of these women have had different experiences with cancer and yet both of them are living with the consequences of breast cancer, the treatment for breast cancer and figuring out how to have a new/different life afterwards. Yes, my metastatic friend has a terminal diagnosis and watches friends die every day. Yes, my early stage friend will probably outlive both of us and she knows that.

I commented on the exchange, highlighting my relationships with both of them and affirming how my early stage friend is an ally to the metastatic community.

Because she is. She’s one of the women who has experienced early stage breast cancer, who knows her risk of becoming metastatic, and who leans into the issues that we metsters face.

We need to recruit men and women who have been touched by breast cancer who will outlive those of us who are dying. This is the obvious consequence of dealing with a terminal diagnosis. It means our life expectancies are cut horribly short.

Compassion and empathy are more important than winning the comparison game.

STOP COMPARING!!

Self Care

I’ve seen quite a bit recently about how important it is to practice self care. Self care looks very different for different people and, I believe, can reflect the personality of the individual. I confess that I’ve not always been particularly good at self care and I would often push myself much farther than I probably should have to meet whatever goals I thought were important at the time. That was before cancer. Now, while I still have a ways to go, I have gotten better.

In no particular order, here is my list of the things I do regularly to take care of myself and how those things fit into my personality.

  1. I’m an introvert, which means I get my energy from being by myself. I love to read and passed my goal of reading 365 books in 2019 in the beginning of September. While I do enjoy being around other people, having the freedom to be myself more has been one of the best things about being home rather than working.
  2. I enjoy being helpful to others, it gives me purpose and when I’m able to be useful to others, it reminds me why I went to law school. Being able to pull back and protect myself is a luxury these days that I don’t take for granted. My version of self care is learning to say no more often when I find myself stressed for no real good reason.
  1. I carry emotions in my body rather than letting them out. This means I need to participate in activities that help me get it out, but also take care of my body. I go to yoga 3 times a week as regularly as possible. It really helps. Also, now that I’m blogging regularly, I’m able to get the emotions out into the world where they belong rather than festering in my body.
  1. I love to learn new things. I really like understanding how things work. Now that I’m immersed in learning about medicine and cancer and how the body works, sometimes I wish I’d taken more sciency classes rather than the literature classes I loved in college, but those years of handling medical malpractice cases and car accidents has had a silver lining.
  2. I get regular massages. I used to get them more infrequently and it helped, but I just didn’t make time for them as much as I needed to. Now, I don’t miss a massage if I can help it.
    Before I got sick, I only went to the doctor when I absolutely had to. Now, I see a variety of medical professionals whose entire focus is my quality of life. Yes, I see lots of doctors who are focused on my cancer too, but that is balanced by the doctors who are there to look out for me and my ability to do my life.
    Before I got sick, I literally only took a vitamin daily. I’ve never liked swallowing pills generally but that wasn’t really the reason, I just really didn’t like taking medication. Now, I take a handful every day. Some are prescribed meds, others supplements, others over the counter meds to address side effects.
    Before chemo, I’d never taken drugs that were not legal. I did get drunk once in college and took one drag on a cigarette. Neither happened again. Now, I have a medical marijuana card and I use cannibis to address a lot of different issues, including, but not limited to, pain, nausea, anxiety and inflammation.
    Before I got sick, I never sought out mental health treatment. I weathered quite a few experiences without needing extra help beyond my own trusty coping mechanisms. Now, I see a psychiatrist regularly and I take medication daily for mood stabilization. A great “off label” use of the same medication is that it reduces my hot flashes.
    SLEEP. I never prioritized my sleep as much as I do now. Everyone is happier when I do.

Self care is vital, it is necessary for … as the saying goes … you can’t pour from an empty cup. How are you filling your cup today?

Showing up

What does it mean to show up for someone?

I’ve thought about this quite a bit over the past several years. Prior to breast cancer, I would have focused only on tangible things. Like literally showing up at an event, delivering a meal or donating necessary time. I still think of these things first. I’m a do-er as I’ve often said. That being said, I do still think that showing up does contain a physical component.

What is less tangible is the emotional support of showing up for someone. I wrote a post earlier this year on “Holding Space,” and I think there are a lot of similarities between the two.

Yet, there are some fundamental differences too.

In my mind, you have to first show up in a meaningful way to be able to make an impact holding space for someone. I also wonder if a person doesn’t know you are holding space for them, is that still helpful? Do you need to tell the person you are doing so? Maybe a little too existential for me.

So, to me, there is a physical component to showing up, and to holding space for someone else. Showing up is extremely important in life and becomes especially important when there has been a trauma. A trauma could be a death, a diagnosis, a serious illness, a job loss … life is full of trauma and some of us get more than others.

When a friend has experienced a trauma, here are my tips for meaningful ways to show up …

  1. Actually show up — visit the hospital, the rehab center, the person’s home.
  2. Set up a meal train. It’s an amazing tool that makes it easy to organize meals for someone who is struggling to do so. People can send money or food and it’s easy to open up or close dates.
  3. Send a note, a card, a letter, a carrier pigeon, an email, a text, whatever method you use to communicate to others. Don’t expect a response right away or maybe never, the point is the effort to reach out and to continue to reach out.
  4. Schedule a play date, with or without adults and with or without wine or maybe some medical marijuana.
  5. Drop off cookies or fruit or chocolate.
  6. Show up at gatherings, for the person experiencing trauma, and ask them about normal life stuff, NOT cancer.
  7. Send a present … this could be a book for bookworms, bath stuff, essential oils, jewelry … pampering gifts are always appreciated. Also, sending spoons is a great website for gifts for people with chronic/ongoing illnesses.
  8. Schedule a spa date! Getting a pedicure, drinking something fun, and having good conversation is a recipe for an amazing afternoon.
  9. Schedule a vacation or a staycation together.
  10. Just keep showing up.

One of the most painful things about the aftermath of a trauma are the people who leave. I don’t fully understand why people don’t stick around. I’m sure some of it has to do with the fact that life changes and maybe relationships have more to do with convenience or proximity than actual connection.

This is what I’d like each of you to remember, when someone you know or care about has experienced a trauma, they need you more not less. When someone you know or care about is struggling, rather than being concerned about what you say, say something. When someone you know or care about has experienced a trauma, lean in and show up. You will experience dividends in return.

Book Review: Flash Count Diary; Menopause and the Vindication of Natural Life

Finally, a book about menopause that I wholeheartedly agree with. Like the author, Darcy Steinke, I’ve attempted to understand the affects of menopause rather than medicate it all away. The author talks about the mainstream menopause authors and how each falls prey to the traditionally male conclusion that aging women must take hormone replacement therapy to be normal.

Why do men recoil from a woman’s normal biological functions?

Menstration, childbirth, breastfeeding, menopause; each natural phase of a woman’s life is marginalized, thrust away and hidden.

But what if it isn’t? The author seeks out aging female animals in an effort to see what happens “in the wild.” She finds examples of aging female leadership and how that is venerated among specific animal populations. Why not in the human population?

The discussion about how the author modeled femininity and her relationship to her body to her daughter was fascinating. The author’s intentional decision not to mimic the same behavior that made her feel less or that she didn’t measure up to her daughter is both admirable and honorable. Her daughter’s horror at beginning to understand how the patriarchy view women and their bodies is classic.

In her chapter on Demonology, the author explores how women are demonized because of our emotions and how menopause, while not fun, is utilized to further sideline women. The symptoms of menopause and how women’s bodies ages different from men becomes synonymous with witches, evil, sinister, and death.

While being open and frank about how bodies change, the author does a great job of exploring how sexuality changes over time, how desire changes over time, and how sexual intimacy isn’t the only form of intimacy for partners. On the other hand, with the childbearing years or opportunities in the past, menopause can offer a different freedom, once the physical pain is resolved.

Yet, why are women and our bodies constantly defined by and in relationship to a man’s?

From viewing how animals deal with the aging female, the author gratefully concludes that female whales teach us that it is not menopause itself that is the problem, but menopause as it is experienced under patriarchy. In the wild, the aging female is not sidelined, but revered.

Menopause is not just physical or biological, but also metaphysical. It is thus harder to define and also defies one’s ability to provide a road map to others coming after.

The author concludes …

Sometimes I think how silly, how human, it was to feel I needed an antidote for menopause: it’s like trying to cure a rainstorm, a tulip tendril or nightfall. As a younger woman, I was led by my biology; now I’ll let the spirit tug me along. When I wake in the dark, incandescent with heat, I pray not to a deity up in the sky, but to the beauty of this world. I pray the body, I pray the lake, I pray the whale.