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I arrived on a cold (at least cold for this Florida-girl) and blustery day in Philadelphia for the HU Connexion Conference in October of 2019. This is the third conference of this kind for the parent company behind advancedbreastcancer.net, (aka ABC) which I write for.
Health Union, LLC owns and operates more than twenty disease specific websites. ABC is just one example. During the conference, we learned more about the values that undergird everything that Health Union does along with why.
There are those companies who put forth a pretty picture of their culture without the commitment to implement what needs to happen to get there. In my experience, Health Union walks the walk and talks the talk.
After I wrote such a long post on Monday, I realized that there were some rather humorous things that happened while I was in the hospital. Yes, even amongst the pain and misery and general yuckiness that happens when they wake you up every few hours to make sure your vitals are still in normal ranges, there were some spots that were quite funny. It is important to remember these bright spots!!
First up, from the emergency room. When I arrived at the emergency room in horrible pain, the ER doc was worried that I might have a compression fracture in my spine, so they sent me for xrays. I was pleasantly floating in a sea of morphine, so I honestly didn’t much care about anything, but I did eventually notice that people who came in to the waiting area for xrays after me were being taken in before me. I mustered the energy to ask for a status after a bit and was told that I hadn’t been taken back for my scans because they were waiting on the results of my pregnancy test.
In “normal” visits, this usually makes me a bit mad because my records are pretty clear. The influence of the morphine made me giggle a little, I told her that they’d not performed a pregnant test, and that pregnancy was literally impossible because I’d had a complete hysterectomy in 2017. The look on the woman’s face was beyond priceless and they took me right back, apologizing profusely.
I had not planned to post yet another medical update, nor do I really like having information to share that constitutes a medical update; however, such is the existence of those of us living with Metastatic Breast Cancer (MBC).
So, here I am.
Last week, as Elliot and I were preparing to head to Orlando on Sunday to assist his father in settling into a new nursing home, I didn’t feel well. It was a migraine, complete with nausea, light and sound sensitivities and generally yuckiness. I tried to go, I really did, but that just didn’t happen.
These are the lyrics of the song written by Shannon Curtis to highlight the plight of those of us living with stage IV metastatic breast cancer.
I know today you were too tired
For feet to ever reach the floor
This year was the second time that my husband, Elliot, and I went to DC for the Metavivor stampede and the METup Die In. Last year, we were nearly entirely focused on the Die In and I think we didn’t enjoy the time as much. This year, we had a very different experience.
I think part of it was that we had an idea of what was going to happen, what we were going to do and who we were going to talk to. Definitely a part of it.
I was at the San Antonio Breast Cancer Symposium (SABCS) in early December, 2019, when a tweet was posted by Liza Bernstein referring to the “violence of cancer. ” At first, I thought I would disagree with the characterization and then, when I spent some time pondering the concept, I discovered that it resonates with me in several different ways.
Here’s the tweet …
I wasn’t able to attend the specific event she was at and referred to in this tweet, but I heard a lot about how wonderful and powerful it was.
It’s 2020 and I’m still marveling that the 90s were so long ago! 2019 ended on a not so great note medically as I’ve been dealing with increasing right leg pain for the last few months. I did not repeat the mistakes I made when I was initially diagnosed and definitely reported my pain, frequently and urgently. While I am grateful to the doctors on my team who listened and responded, I’m extremely disappointed that my experience with a new doctor who was supposed to offer options had to result in me filing a formal complaint against her and her physician assistant who dismissed my pain and acted as if I was making it up.
I do have certain expectations of the people who are paid to assist me with my medical treatment. My visits with these people are not voluntary, I have to go. Their job is clear … to treat my cancer, the symptoms of that cancer along with the symptoms of the medication the doctors prescribe for me, and to look at me as a human being while performing task one and two. To me, the third part becomes extremely important when pain is involved and when any part of this three legged stool is compromised, the entire thing collapses.
So, here’s the chronology and the remaining tasks …
2020 is here. Each new season and calendar change means something very different to me now. When I was young, I felt the frustration and anticipation of yearning to be older and for time to pass more quickly. As I’ve gotten older, time seems to move too fast sometimes and not fast enough at other times.
Once I knew that my lifespan will be cut amazingly short, time has taken on a new meaning. I struggle to remain in the moment at times and other times, I can’t bear to see the moments end. I sometimes visualize what my boys will look like when they are older, what their children might look like, who they might choose to spend their lives with. Sometimes that is too hard because I will most likely miss that. When these thoughts become overwhelming, I try to channel those emotions into writing a letter for my boys to open at these key milestones.
If some of most recent studies on lifespans is accurate and my cancer stays in my bones, I can hope for a life expectancy of approximately ten (10) years. Next March will be my 3 year cancerversary, so that means about 7 years left. This is better than the 2-3 year median life expectancy of metastatic breast cancer overall, which I will reach in a few months time, but that is still nowhere near enough time.
2017 was a doozy, probably the worst year of my life to date. 2018 and 2019 have been quite different as we continue to recover from 2017 and discover how our lives have changed. Every time I start to think we’ve figured something out, things change. The saying … “the only constant is change” … is something I think about a lot.
So, in no particular order, here are the lessons of 2019 …We’ve re-discovered in a very different way that living life closely with family can have significant ups and downs. Having this much close family time for the first time in decades has brought it’s own challenges and navigating those issues as adults is very different from when we were kids. My parents regularly refer to the 6 of us as dragons and when we’re at odds, it’s pretty spectacular in many different ways. We’ve discovered that as soon as things seem stable and quiet, things change. I experienced my first progression in August of 2019. Progression is when the cancer mutates, figures out how to defeat the cancer medication, and starts spreading again. My progression was “mild” as I only had two new bone Mets, but the fact that the cancer mutated at all was devastating. I am thankful that Ibrance worked for 24 months and I had a good quality of life. Piqray is now my main cancer drug and we’re still working on figuring out how to capture a similar quality of life. We’ve discovered that being a part of the right community is important for the whole family. It has taken us a bit of time to find that community, but I think we have found a place where we are all supported and we can be friends with other families. A “play date” with a bunch of boys is a little different from “play dates” with girls, but we’re figuring out how to make it work for everyone. We attended our first “Friendsmas” this year and have rediscovered the joy of being close to other families and the benefits of being able to lean on others. My non-profit, Connect IV Legal Services, launched officially in January of 2019 and I’ve been able to connect over 70 families with legal services that they desperately need. It’s hard to describe how meaningful it is to me to be helpful to others, to ease a burden, to provide solutions. I lost some people I knew in 2018 to cancer but I had no way to know that 2019 would be devastating in the metastatic breast cancer world. The number of young, vibrant women, daughters, mothers, wives, we lost in 2019 has hit me hard. I knew many of them in real life, all of them online, and it’s been one of the hardest things I’ve ever experienced. I am irrevocably changed by the women and men I’ve met and gotten to know who have cancer. They have changed me and I believe I’m better for it.
At the end of the day, family is the most important. At the end of the day, the boys being healthy, learning to be authentic and growing up with the values we consider important is so key. If we can help others along the way, then so much better. Here’s to ringing in 2020 with an even better outlook on life than 365 days ago!
Christmas has changed quite a bit for me since I was a ￼child. Even though my parents did a lot to remind us what Christmas means to those of us in the Christian faith, it was genuinely mostly about presents. I see this same perspective in my boys. Despite our best efforts and discussions and books and going to church services, I still see their eyes gravitate towards the presents.
Oh to have a childlike view of the world again. When upsets and booboos can be cured with a hug and a kiss. When the worst thing is missing some time with electronics or having to take a nap. When the worries and concerns are confined to brotherly squabbles that are over when someone is tickled. When mom and dad can make all things right with the world.
Those were simpler times and there is literally no greater joy at Christmas time than to see the love and enthusiasm in my boys. For them, the moment is all there is. For them, life is meant to be embraced wholeheartedly and unreservedly. For them, life is simple.“The light of the Christmas star to you, The warmth of home and hearth to you, The cheer and good will of friends to you, The hope of a childlike heart to you, The joy of a thousand angels to you, The love of the Son, And God’s peace to you.”
Christmas Eve Candlelight Meditation By Gary Kowalski
Once more the year’s turned round.
We’ve come full circle on this small planet,
Spinning down the grooves of change,
Another revolution completed around the sun.
Another year older …
Another set of rings on the tree …
As seasons parade in endless procession
The people’s troubles and prayers remain the same:
The worries don’t change.
Generation after generation making the same mistakes,
So many thousands of circuits in a world filled with war and woe,
Full of sound and fury,
Bleared, smeared with toil,
The ebb and flow never-ending,
The grating sound of pebbles which the waves draw back
And fling at their return up the high strand,
Begin, and cease, and then again begin
With tremulous cadence slow,
But bringing us always back to Christmas
Back to a place we’ve always known
Where we’ve never been before,
Back to a time that stands outside of time:
Not part of the regular orbit, but the axis of the year,
A still point, a fixity, the center post and ridge pole
Around which all the rest revolves.About the Author Gary Kowalski. The Rev. Gary Kowalski is a Unitarian Universalist minister and author of many books, including Revolutionary Spirits , Science and the Search for God , and The Bible According to Noah . He served congregations in Vermont, Washington, Tennessee, Massachusetts, and New Mexico
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.
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.
Another trip around the sun, my third since being diagnosed with stage IV metastatic breast Cancer.
When I was a kid, each birthday was a milestone as I got older and I looked forward to each year because I was moving towards something. Turning 16 and getting my license was huge. Voting was a close second. Turning 21 meant attaining adulthood and being able to legally drink, even though that wasn’t a huge draw for me, just the independence and autonomy.
At some point, birthdays weren’t as exciting. Probably around 30 or so. Birthdays became about getting older and, once I got married and then the kiddos came along, birthdays were more about others. It’s so easy to lose the sense of self when you place the needs of others above your own.
I love Christmas. The decorating, the gift giving, the family time. It is literally my favorite time of the year. Not just because my birthday is also in the mix, but there’s that too.
As soon as it’s mildly socially acceptable, I break out the Christmas music. The boys tolerate my singing for a song, if I’m lucky, and then they clamor for their own entertainment. One of my favorite CDs is the Pentatonix Christmas CD. For those of you who don’t know, it’s just voices, no instruments.
Every year, I weep when hearing this song …
Saturday mornings have never been the same for me. They are now a Grief Anniversary; a perpetual, involuntary holiday where my heart marks its injury over and over and over again without me getting a say in the matter.Since that terrible day there has rarely been a Saturday morning regardless of what I’ve been in the middle of, when I have not found myself reliving it in some way, my mind jarred from its routine to momentarily eulogize my father once again.
I read this article recently and it resonates with me so much. I’ve lost members of my extended family, not yet my immediate family and while those anniversaries are difficult, no anniversaries are as difficult as those that mark milestones in my stage IV metastatic breast cancer.
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.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. 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. 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! 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!
By Merrit Malloy
When I die
Give what’s left of me away
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.
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.
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.