Updates:

Someone asked me how I’m doing and what I’ve been up to lately and I realize I have not been sharing much on my blog. At all. In fact, I’ve shared very little of what the last 14 months have been like and what, besides fighting for my life, I have been up to. So, I’ll do that now, briefly.

Health

I’m grateful to say I’m feeling decent. While I’m still in a clinical trial and getting monthly immunotherapy infusions, and take twice a day chemo pills (PARP inhibitors), and both of those things can make me tired, I feel much healthier than when I was getting chemo.

My white and red counts are much improved though not 100% (as platelets dip below normal and white counts fluctuate). As COVID case numbers pick up my anxiety about going into the hospital increases. And now I have a routine with compression garments and my daily compression machine to help manage my pelvic lymphedema as well as the lymphedema in my left leg and foot. I’m grateful to have FAR LESS SWELLING.

While I still have chemo brain, a little problems with balance, and some neuropathy, all have improved. And, I started mistletoe injections as well to help support my immune system and to help with side effects. My anxiety about recurrence is a low level humming always on in the background. I know the recurrence rates for my cancer are 85% and that it happens most often in the first year or second after treatment. I’ve had some signs of recurrence (increasing CA-125) but the scans, so far, have been clear and I work VERY HARD not to lose days I am feeling well worrying about days I might not be well. It’s a challenge and some days and nights I do better than others. I’m grateful that I have so many regulation tools learned from recovering from PTSD.

I have not had the time or energy to write much. However, I’ve published a few pieces since I’ve been diagnosed and they are listed below if you are interested.

Cancer, COVID, and Change / The Patient Empowerment Network

In this moment / The Patient Empowerment Network

Patient 3155175 is Me/ACEs Connection

Cancer as a Survivor / ACEs Connection

Family

There’s lots happening in my family but because not everyone is open or comfortable sharing stuff online, I’ll just say that I am grateful I’m feeling better enough to be a support and not only a person who has had to be supported. I’m grateful I get to be here, now, while my daughter starts looking into colleges, thinking about her career future, and life after high school. I’m grateful I get to see people, even if only outside and while wearing masks to celebrate some milestones. And I’m glad to have a warm and cozy home shared with people I adore because we are all here most of the time!

Volunteer

I’ve started volunteering with Survivors Teaching Students as part of the Ovarian Cancer Research Alliance (OCRA). It’s a great program where survivors help educate medical students about this disease. That feels good. Although I wish I didn’t have this cancer I do want to do anything I can to help future doctors understand how dismal the prognosis is for most of us because there are no effective early detection screening tests available and so far, science has failed survivors and has not improved the overall survival rate in half a century despite all the women that have participated in clinical trials and all the drugs that have been tested. People with ovaries deserve more and better.

Work

I really love my work. It’s a calling and I’ve slowed down because of my diagnosis, but I have not stopped working completely. Here are a few things I’ve done professionally that I feel good about.

I was featured in this great piece by Alissa Quart in The Boston Globe entitled Rethinking ‘resilience’ and ‘grit’.

Trauma Therapist Podcast: 1st time

The first time I spoke with Guy was the last day I had my hair. I’d had my first chemo and was waiting for this interview to be over before I shaved my head. It was already starting to come out but I wasn’t ready to be bald on this bucket list life event. However, I NOW notice that Guy is bald and I could care less. But, it was still early in my journey and I wasn’t sure how I’d feel or look bald. Anyhow, it was a GREAT experience for me to speak with Guy. I’ve followed his work forever and am grateful that he also introduces new trauma therapist to the work of survivor advocates.

Trauma Therapist Podcast (the second time)

This time I had my wig and was almost done with chemo. I didn’t have eyelashes or eyebrows (though I drew some on) and I was feeling pretty weak and awful and worried that chemo brain might make me incoherent. I was working very little but again, this was a bucket list event for me from even before I was sick. And conversations, at least one on one, energize me and this did that. Again, I’m so grateful that Guy is so curious, caring, and eager to share varied viewpoints and opinions with those who tune into his show.

Healing Our Ghosts

Finally, and most recently I had the great pleasure to speak with Jane Mulcahy on “How to talk policy and influence people”: a Law and Justice interview and we honestly could have gone on for hours and hours. I met Jane via Twitter but this was our first virtual face to face conversation and I hope it’s not our last.

ACEs Connection (day job): I’ve been SO FORTUNATE that I’m able to work, half-time, while getting treatment for #ovariancancer. Now that I’ve really looked at my own mortality and started to consider how much time I have left in this world, I’m aware of how I spend my time and am grateful to have work that not only provides health insurance and me to pay the bills, but is also meaningful. Here’s some of what I’ve been up to at work.

Anti-Racism Resources
I am on the equity task force at work. I have not understood how much anti-racism work is needed and that we, who are white, need to be way more active rather than just believing ourselves to be not racist. I’ve protected my time and energy a lot this year but learning more about racism, and anti-racism work is long overdue and if I’m in my last years of life, I want to be involved in doing and learning more so that people of color have the same rights, freedoms, advantages, safety, and protections that while people generally have for no other reason than we are white. I’m glad that conversations about ACEs and racism happen much more often, that we understand that racism is trauma and toxic stress and it impacts children and adults. We can’t talk about creating safe, stable and nurturing families, communities, and systems without confronting racism though many of us have done so for far too long.

This was an exciting conversation with Dr. Ed Tronick and Dr. Claudia Gold who co-authored The Power of Discord and spoke about it here.

One of my favorite people on the planet is Rebecca Lewis Pankratz and I think it’s easy to see why watching this. She is amazing, honest, powerful, and speaks about poverty and ACEs in ways few others do. Amazing.

School nurse Robin Cogan spoke to a bunch of us in the late summer addressing parent concerns about COVID and going back to school (or not). Robin may look familiar as she has been on CNN several times, and has also been published widely and nationally reminding all of us that public health, science, and national leadership are desperately needed and that nurses as well as others are being asked to work in dangerous conditions, not just because of COVID but because of the lack of policy, protective equipment, and the current polarization of things as common sense as wearing masks or maintaining physical distancing.

I hope I continue to get better, stronger, and that I have more time and energy for creativity. I know we have all been hyper focused on health since the pandemic. Or focused on social justice. Or focused on surviving climate disasters. Or are food and housing insecure or worried about not having enough. Or all of the above. I wish for more ease, security, and joy, for less isolation, disease, and fears about survival.

I plan to blog more in the future, as time and energy permit. I know that I’m a healthier and happier person when I’m doing more creative writing even if I have nothing to write but questions, concerns, and complaints. Whatever I put down on paper I do not have to carry inside.

I’m so glad I have friends I free-write with each week. It’s a place I know I can be honest with myself and where I can also be witnessed and offer the gift of witnessing to others.

When I started this website and called it Heal Write Now I was talking only about healing from trauma but I think of healing in a much more expansive way these days. I heard Belleruth Naparstek of Health Journeys talking about how one can heal from cancer even if one isn’t cured and how one can be “cured” of cancer but not healed. I think too often we talk about cancer as though it is a battle that is lost or won and i don’t believe that. I love the idea that no matter how much or how little cancer we have in our bodies, we are ALWAYS capable of healing! I think that is true about trauma as well. We are always invited to heal write now.

You Matter Mantras

Trauma sucks. You don't.
Write to express not to impress.
It's not trauma informed if it's not informed by trauma survivors.
Breathing isn't optional.

You Are Invited Too & To:

Heal Write Now on Facebook
Parenting with ACEs at the ACEsConectionNetwork
The #FacesOfPTSD campaign.
When I'm not post-traumatically pissed or stressed I try to Twitter, Instagram & Pinterest.