School Nursing

An Important Message From Cissy White: Survivor Squared

Survivor Squared?

 

Note: I’m writing so much but I’ve got less energy than usual to edit so I’m sharing what and when I can.

Usually, I move quickly. 

Now, I’m often stunned. It took me a week to get some of the short-term disability form filled out, signed, and faxed. The papers watched me each morning from my kitchen table waiting to be filled out. They still aren’t done. There’s more I need to do. 

Sometimes I am frozen.  

How do I answer when I’ll go back to work, or how much, when I don’t even know the treatment protocol that’s coming, never mind how it will affect my body, mind, and life?

****

My daughter left her biology notebook on the kitchen table so I can learn about cells and the immune system. She’s sharing the amobea sister videos with me to dumb it down and make it easier. She knows I’m a writer and tend to think in metaphors. 

Before I knew what pelvic edema is (think a lot of swelling), I’d just say, “it just feels like I’ve been packed with nine baseball gloves from the waist down.” I thought baseball mitts because some parts of my skin were hard and soft, while others were light or dark, and I felt all weathered weird, like leather, by the surgery. 

Now, I’m trying to be more literal, specific, and scientific so I can understand and be understood by medicine. Now, I’m trying to speak a new scientific language and slip into a model that is all symptom assessment and treatment plans. 

I’m also trying to learn to ask for and accept more help. And I’ve needed help to wrap my brain both around my diagnosis but also the science. My writer’s clan to help me find studies, and research, so I can be informed. 

While a nurse told me to stay off “Mr. Google,” I insisted that would be impossible. Plus, for me, with ovarian cancer, it’s definitely Ms. Google I’m turning to. It was Ms. Google, after all, not a medical person that helped me understand I had pelvic edema after surgery, rather than my medical team. 

Ms. Google and I are close. Ms. Google helps me find resources, survivors, and others living with the same diagnosis, helps me cross-check and crowdsource information. Ms. Google and I hang out daily.

***

I feel like I’m cramming for “the cure” for ovarian cancer even though I’ve never been good anatomy, biology, or technology. Truthfully, I’ve been as ignorant about the inside of my body as my car engine. How often have I just let others tend to what’s under the hood? 

In college, when I had my second ever gynecological exam ever, the nurse practitioner handed me a mirror and asked me if I wanted to watch. 

Watch? 

Watch what? 

I took the mirror and held it up to my face. I thought she must be asking if I want to see how my face looks when a speculum is inserted. 

She guided my hand with the mirror down so I could see my own body as she was doing the procedure in order to learn my own basic anatomy. 

Hell no. I put the mirror down. That was three-plus decades ago. 

As a survivor of childhood sexual abuse it had never occurred to me that my body was mine, for me, and something I should learn about. 

I didn’t know words like disconnected or dissociated or traumatized yet. I didn’t know others inhabited, explored, and were interested in their own bodily needs, functions, and basic anatomy. 

At the time, the mere idea that anyone would say yes to “Do you want to watch your gyn exam?” baffled me.

Three decades later and the emergency on-call doctor asks me to photograph myself post-surgery so I can track vulva swelling changes before bed and when I wake up in order to determine if I need to be seen in the emergency room or can wait it out til the end of the weekend. No one tells you how much swelling is normal after a hysterectomy and if, like me, you’ve never given birth or delivered anything, the changes can be shocking. 

In my 50’s, if it will spare me a trip to the ER, I will text images over my cell phone if need be. 

It’s been the work of my life to become less ashamed and more inhabited, in all parts of my body and being. This willingness to attend to and expect decent treatment, for me, is a victory.

I have cancer and I’m a trauma survivor. I’m a survivor with cancer but not yet a cancer survivor.

Will I be a survivor squared?

Many people use the phrase CPTSD to stand for PTSD from complex trauma. To me, C-PTSD means cancer and PTSD.

I wish I had more trust in medicine. I wish I had more trust in people. wish I had more trust in trust itself. 

Actually, I’m not sure that is true. Sometimes, I wonder if my mistrust in medicine is actually a type of power, an asset, arming me to be pro-active. 

When diagnosed with PTSD, I gave all my power over to the “experts” and did little that wasn’t recommended. I was a by the book kind of person. I had friends who questioned, challenged, and rejected traditional drugs and treatments and set out on their own healing path. I did not because I was afraid.

I wanted someone to tell me how to be and feel different and to do quickly.

Three decades later and I’m not a do it by the book human.

Three decades later and in my office I’ve got this quote:

“When writing the story of your life, don’t let anyone else hold the pen.”

I didn’t know this. It took me lots of hard lessons to learn.

There was no magic bullet for any of us. Most of us had to figure out some mix of Do-it-Yourself and external supports when managing PTSD that was not caused by the war, that was more complex, and interpersonal, from childhood or generational.

There was no linear path for anyone I know and those most marginalized often got (and still get) the worst treatment.

So can I say I’m surprised there’s not a lot of advances in the treatment of ovarian cancer, a disease that impacts mostly middle-age and older women? I am not.

There’s way more room for research, practices, creativity, and cures. We survivors can invite ourselves to the solutions table and help each other advance our health and lives by connecting and sharing directly.

I’m in a new world. The medical model focuses on prolonging life as long as possible, which, on the face of it, sounds pretty appealing. And I certainly want to live a normal length life if I can, and way longer than the average prognosis, but I’m also a quality of life kind of person, as well.

After one oncology appointment a doctor wrote about my QOL (quality-of-life) comment because if one wants to keep a job or be physically or emotionally able to parent, that will actually rule out some treatments (more on that later). 

Is QOL not normally and routinely considered a priority for folks with cancer? 

I told the oncologist I met I fear lack of agency, choice, and control more than I fear death. 

Is that a survivor thing? Is that a human thing? Is that a trust thing? 

Maybe I should have said, I’m also furious and dubious about doctors and nurse practitioners because a whole bunch of you missed my grapefruit-sized cyst at five different appointments.

Why wasn’t prevention and cure the focus back then, when it would have more if not the most difference?

Just because I do care about my QOL during cancer, I don’t want anyone to think that means I won’t fight fucking hard, because I know how to do that, thank you very much, and plan to do just that.

It just means I need anyone working with me to know that though I am now a person fighting cancer I am still a mother, writer, lover, daughter, sister, friend, partner, and survivor with PTSD with a job I like and need which provides health insurance. 

How I get through the treatment of cancer matters. 

How I get through this impacts me and everyone in my life as well. 

Meeting and learning from others who have had this type of cancer, and treatment, and who have stories and lessons to share is at least as important to me as meeting medical folks who treat it and see me once a month.

I can’t make decisions without learning from others, online or in person. For example, if I’m so sick (as sounds like it would have been the case with the IP chemo (through the belly), that I can’t work, have to be hospitalized more often, have intense side effects, that’s stuff I need to know.

How will I parent, manage my PTSD, find time and energy for loved ones, work, creativity, humor, love, and energy to walk, eat, and savor life right now if I’m life-threateningly sick and have only a handful of studies showing the benefits of dose-dense or IP or traditional IV chemo?  

Does it make sense to give up six months during chemo to get 2 or 3 or 4 more months of life? How does one even begin thinking about these things? How can medical folks not consider kids, jobs, and our experiences of treatments more readily?

Fearing a lack of control, agency, and choice more than death means fearing being poked, prodded, and feeling like an object and not a person.

Fearing lack of control, agency, and choice, can be triggering but I have to think that’s not a good experience even for non-survivors.

I want to stay alive but also to feel alive and safe while fighting for my life.

“Write that down and blog on that,” my friend Heidi said, “ because it’s not something most people get. To us, losing control feels like dying, or worse.”

“Exactly,” I said, “and not the good kind of peaceful dying… but the terrifying being chased and tortured first, and then killed.”

Survivors of trauma know that just being alive isn’t enough and that to be alive without dignity, safety, choices, and respect can wear one’s will to live rather than support or enhance or promote it. 

Plus, I also shared with the oncologist the study my ex-husband had forwarded to me that was published the week before that found that those who’d had PTSD, ever, had twice ovarian cancer as those who had not. If PTSD symptoms make getting ovarian cancer more common and likely, surely managing PTSD symptoms while living with ovarian cancer makes some medical sense.

I wrote to the study authors about that, in fact, and it’s not something anyone can say for sure, because there’s not been a study on that. I shared the study with my oncologist and surgeon.

Treating ovarian cancer and PTSD, together, figuring out how they are related, even when studies suggest a link, isn’t yet a thing routinely done by surgeons, oncologists, or even geneticists.

That’s part of what all of us increasing awareness about adverse childhood experiences and their lifelong impact on health and disease are trying to change. We know there are correlations and overlaps and epi-genetics and social determinants of health.

But so far, fields and experts and varied studies are in silos and so it is up to us who are impacted to educate and inform our providers about the complexity of our lives.

The whole intersectional thing….

We do this even as our lives and health are on the line.

We do this with cancer, trauma, and while symptomatic because we have no choice. We rely on systems for survival but systems need healing and change. The medical system should be an ally, not a foe.

We fight for ourselves and for others because lives should not be shortened, limited, and silenced by ACEs, cancer, and injustice more than they already are. Some people have told me I should save my strength and back-burner advocacy til I’m on the other side of recovery.

That’s not possible for trauma survivors and people with cancer or anyone fighting for life and health. We must advocate for ourselves and each other, and we benefit from those who have done so ahead of us. It’s where the hope, healing, and maybe even the cure can be found.

***

There are days so good and sweet when I feel so strong and loved it feels wrong to open get-well cards and accept gifts. I want to say, “The well wishes are already working because I feel good right now, in this minute or moment or day.”

Sometimes, I feel too healthy to get gifts or meals. Sometimes, I’m not too tired to do stuff myself and think the help should go to people who need it more.

My guy says, “Can you bank that love?”

My friends say, “Can you let people who want to help just help?

There are days I wince in my sleep and play guided imagery on a repeat loop because it hurts just to be in my skin. But those are not all day or every day or even close.

There are days I stare at the stars and wake up watching the sun rise.

There are days my daughter and I laugh, even playing with wigs and talk homework and schedules and share photos of our pets.

I have all the cards and gift tags I have received in a box, so I can write thank you notes but also so I can “bank” and ground in that love when I’m feeling less than. I have proof of love, reminders, touchstones, and it’s more than I can yet take all the way in.

Part of healing is taking it all, every bit of love, all the way in.

There are days my guy and I taste a fava bean sauce so good we will lick our lips every time we speak of it as if we can taste the beans again and again. We will say how many new foods this plant-based diet has introduced me to, how I will get creative to stay strong, and how it means I will try foods I’ve never tasted.

Not every bit or bite is loss these days.

I’m losing my hair but I have people who love me an don’t give a crap how I look.

I appreciate parts of life I had never tasted, ingested, digested.

There is slowness, savoring, and delight.

There is humility.

People who barely know me have offered rides, food, and help. OFTEN. It’s astounding.

I am changing. Life is changing.

“You will want a piece of toast someday,” an oncologist said, “and it’s o.k. to eat comfort food.”

I don’t want the same old comforts right now though.

I welcome life. I welcome change. I welcome love.

I don’t want the things I turned to when stress to make me work or move past listening to my own needs or body. I want my priorities and perspectives to change.

If cancer doesn’t stun one awake what should?

To be fair, my oncologist didn’t want me to torture or punish myself with fasts or strict diets when she says there’s not a lot of research yet that shows doing so matters in terms of treating cancer.

Both she, and my surgeon, who said eat a bowl of ice cream once a week if you want, didn’t think new or extreme dietary changes are needed right now. They both said they don’t believe my cancer was caused by diet and won’t be cured by diet. There are those who think what we do and don’t eat is like if we do or don’t smoke. There are some who want to believe they can’t get cancer if they have a specific diet. There are those who don’t know that eating organic and healthy is difficult if not impossible and who doesn’t know or care about class issues, food desserts, or privilege.

I’m trying to do and learn all I can without getting caught in the vested interests or approaches of traditional medical models or those selling fast fixes and cures and profiting in the process as much as the cancer complex.

That said, I wish there was more research on fasting, nutrition, and dietary changes during cancer treatments, as prevention and actual treatment so we as patients would have more guidance and support. I wish we could find ways to eat healthier, that are affordable and accessible.

I don’t get the resistance to nutrition and diet when there’s not enough “evidence-based” science to support it. I mentioned to my oncologist that health outcomes for those with ovarian cancer haven’t changed much in 30-40 years (and folks at Dana Farber say that, too). Still, we continue with chemo and drugs that we have decades of evidence do not cure cancer in 4 out of 5 diagnosed at late stages which is 80% or more of us.

If we have evidence something doesn’t help and still do it, why do we dismiss newer approaches so readily? There are countless clinical trials on adding new drugs to chemo, to help it to work better, so why is that any worse than trying something I can do for free that at least shows benefits in animals and is considered safe for most people who carry extra weight like I do.

I’m still new to this landscape and hope I’ve just not found the lifestyle and immunotherapy and diet, fasting, nutrition, and PTSD linked clinical trials. Please share if you know of some or have been involved with them.

Til then, I’ll do as much as I can on my own to learn about wheatgrass shots, fasting, supplements, and complementary practices and medicines.

My friends and loved ones are sharing articles, research, links, and actual supplements with me. I’m so loved, so lucky, and the beneficiary of so much kindness and support.

That too, I know is healing, healthful, and beneficial. That too I’m learning how to receive, rest in, allow, trust, accept, and share.

Survivor Squared?

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