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Dying Ain’t Dead

“Can I toss these?” my guy said grabbing the vase of wilting daffodils.

“No,” I shouted. “Please, no. I’m trying to find the beauty in dying,” I said.

I’ve been taking pictures of these flowers since I got them. First, they were tight and closed, then blaring yellow in open-hearted pride, and then, slowly they began to brown and shrivel up. But they are still alive, like me, and that is worthy of notice and celebration.

I’m not ready to add them to the compost bin, not ready to empty the water around their green stems. I can still see the beauty they are as what they were fade. Yes, it’s true, they are not as bright or healthy as they were. But on the planet still and with some life left in them yet, they are. Can I pause to appreciate this not only in myself but in others?

I’ve had a few shit-my-pants scared kinds of nights. It’s not just that recurrence means I can’t be cured, the crap news no one wants but that most of us with ovarian cancer will indeed get. I’ve mostly wrapped my heart and brain around that. I’ve grieved and mourned the old woman I am unlikely to become. I’ve realized there’s no guarantee I’ll be around for graduations, weddings, births, and even the death of others.

“The chances are 50/50 you will be alive in three years,” my oncologist said when pressing me on doing more chemo and maintenance therapies.

“But how much of that time is dying?” I asked, somewhat dismissively.

“None of it if you are alive,” he said. And here, it is important to share that my oncologist is both doctor and minister and though I’m not religious, it is one of the things I love most about him, that and his kindness and responsiveness. Once, when I was fretting, he said, “Never worry alone.” I love a doctor who invites you to share your worries and concerns, and who means it as well. I also have his cell phone and email and he texts me almost immediately after scans. This is invaluable and generous and rare, from what I have heard.

But, in the last few months, I’ve had trouble breathing, exercising, and exerting on any level. I spent a day in the ER ruling out a pulmonary embolism, getting cardiac work-ups, follow-ups, and a specialist appointment to see if I have a right atrial enlargement. The thing about cancer is that it’s not even the cancer that causes most of the problems, but the cancer treatments including chemo, immunotherapy, maintenance drugs as well as all of those in combination. And that’s after surgery, for most, and for some it also means radiation treatment.

The longer I live with cancer, the more often I go to the doctor’s office. I kept saying, “It feels like I’m on chemo but I’m not on chemo,” as though this should be a red flag, an alarm, and mean something significant. It didn’t.

And then, the breathing got even worse, and there was pain that made it hard to sleep, stand, walk, workout, or be. Sometimes the pain was heavy, like a hardness in my chest, or like a weighted blanket on my back. Other times, when I sneezed or hiccupped or breathed in deep it was more like a shooting pain beneath the ribs in my back and was like a bad back where the times you find comfort are far outnumbered by the hours when everything hurts.

Sure enough, there was fluid in my right pleural space beneath my lung. My back got “tapped” like a keg, and it looked like a pitcher of beer was drained from me. Immediately, I felt better – not so much in terms of pain relief but in energy, ability to walk stairs, stand upright for hours, and clean the house. I felt sort of like myself and it made me realize how bad it had actually got. It happened slowly and I thought I was just lazy and out of shape.

I wanted the fluid in my lung to be from the Moderna shot or even maybe a past case of COVID, but the most likely thing, malignant cells and cancer as the cause were indeed what it turned out to be.

Even when I think I’ve sort of realized I might not get to 58 or 60, then it occurs to me that I might not even make it to my next birthday. “Whew,” my oncologist texted when I told him that the pulmonary embolism the PA said meant would require immediate blood thinners and hospitalization, was actually not a pulmonary embolism but a pleural effusion.

How does a mistake like that happen? Is it just from a quick glance of someone in a hurry? Pulmonary embolism and pleural effusion sort of look and sound alike and if you aren’t used to treating cancer patients maybe seem more similar than different.

I don’t know I only know that it’s terrifying to Google pleural effusion and cancer and so I’m not even going to Google pulmonary embolism and cancer. I’ll trust my oncologist’s “whew” and try to think of this as better than it could have been otherwise news.

But, when my oncologist called me about a week later with the cytology and said it was positive, I said, “not as in good news, but positive for cancer, right?”

“Yes,” he said, “Positive for cancer so negative news.”

“Got it,” I said.

“The lymph node growth is small,” he said, “but the recurrence is real.”

Somehow I still feel optimistic. I don’t know if I’m in denial, if it’s all my loved ones lathering me with prayers, calls, and kindness or a bit of both. I am exploring low-dose chemotherapy combined with off-label drugs. I’m not so keen on clinical trials as I used to be given that I wasn’t able to be unblinded when I had cardiac, lung, and even Moderna vaccine related questions about it and when I was (or was not) on PARPs or immuno or both or just placebo.

All I know for sure is that dying is not dead, though I was irritated when my oncologist first said this. I am alive. I am living. This is the way my life is right now and maybe it gets better and maybe it gets worse. I don’t know that yet. And neither, really, does anyone!

“I’ve lived with someone with ovarian cancer,” I told my oncologist, “And dying isn’t the same as living – and can include a lot of misery as well as closeness and intimacy.”

He may treat hundreds and thousands with ovarian cancer but I have the disease and loved and lived with my Nana when she did. I can’t help but think of what those who love me will go through if I get worse, and worse, and worse, and worse. Is there any way we can all see this as life and living? I don’t want to waste my time worrying about death which will come for each and every one of us. But sometimes I do.

I’m trying to savor all forms of beauty and life, including honoring and acknowledging the shifts, changes, and even the breaking and withering. That too is part of life and is why I am glad my oncologist sometimes talks like a minister. Sometimes it takes me a minute or even months to hear and listen and trust and believe him.

Today, I walk the beach with loved ones and furry companions. Today, the sun is shining. Today, I have no horrible or distracting pain. Today, I am aware and awake and have had an exceptionally good week.

Today, I love these daffodils. Today, I can see they are not yet dead while also knowing they are dying. Dying is a also a kind of living and one I’m learning how to appreciate. And if I get more days and times, if my bloom and color returns, I will appreciate it even more. If it doesn’t, that too is a way of life and one we should all learn to notice, accept, and even embrace. We all know, “No one gets out of here alive,” but how many really integrate that knowledge into our way of living? I didn’t. And I hope you don’t have to get cancer to do so.

See below. The same flowers. Two types of beauty.

 

In this moment

“Is there a pressure to be positive all the time?” my friend Kathy asked.

It’s a good question. I said, “No,” and then “Yes,” and added in a “Maybe.”

But it’s not a simple yes, no, or maybe. It’s actually Yes-No-Maybe all at the same time. My kid is on Facebook and so is my family. My friends are on Facebook and they want the best or at least to know I’m not suffering. I’m aware of that and of them. But that doesn’t mean I show up fake or put on fronts. I don’t.

The pressure to be positive isn’t external. I am safe to be real with SO MANY people and that luxury is a gift beyond measure. The desire to be positive comes from within but it’s not motivated by pressure. It’s real. In general, I ACTUALLY FEEL positive.

And also, when my oncologist asks how my partner or daughter are doing, I say:

“Well, I’m cranky, lethargic, have chemo-brain, and obsessed with recurrence so that’s fun for them…”

That’s also real.

Real is positive.

So, when people say I’m strong, a rock star, a warrior, and a fighter, I can’t say I feel I am any of those things. My day to day to life has been changed and though I feel 100% half-ass as a mom, partner, friend, relative, and employee – I also know I’m doing the best I can.

I don’t even have much time to think of how I’m doing because I’m so busy doing, if that makes sense.

It’s like I woke up after surgery standing in the middle of a highway I didn’t drive myself on. The focus is dodging the cars going 75 m.p.h. on my left and right while feeling groggy and confused. When I manage to make it to the sidewalk or the rest area, the relief I feel is real. I’m happy to be alive and out of danger. It’s a genuine and consuming experience. I’m relieved any time I’m not in the road and also aware I could be dropped back on that highway in another minute, day, week, or year.

That’s the complexity and reality of living with cancer (#ovarian, high-grade serious, stage 3) that, even when it’s effectively treated, still recurs 75% to 85% of the time. To have no evidence of disease isn’t the type of blessing I’ve been in the habit of counting.

For decades, I have had the luxury of physical wellness and had never stayed overnight in a hospital. Health isn’t something I take for granted anymore but that doesn’t make me a warrior as much as it makes me someone changed by cancer more than by choice.

I used to think people were sick with cancer, and either mounted a “successful” fight and returned to living or lost “the fight” and died. It seemed either/or and as those were the two extreme outcomes.

I knew my mother HAD cervical cancer in her early 20’s and survived. I knew that my Nana and her two siblings had cancer in their 60’s, and did not. They died.

I know cancer is always a full-on fight for the person with cancer and those that live with and love them (us), but fights are won or lost and that is the problem with the “fight cancer” narrative. It’s way too simplistic for the complexity of cancer, cancer treatment, cancer survivorship, palliative care, and grief.

It omits the vast amounts of time that many of us live with cancer. We live with it in active form, or in remission, or in fear of recurrence, and sometimes with recurrence after recurrence. That way of living may last one or two years or one or two decades. We may have years we seem to be “winning” the fight and years we seem to be “losing.”

But winning and losing is far too simplistic. Some live and have loss. Some die and should be counted as winners.

I’d never known some fight the same cancer repeatedly, or “beat” it before getting another kind and another and another. I didn’t know that people cancer can be a lifelong disease and that some kinds are genetic time bombs in our bodies and families that can put us at risk even if we never smoked.

I didn’t know that one can have or five surgeries, that the side effects can start at the head (loss of hair, headaches, chemo brain, no nose hair, dry mouth, hearing loss), for example, and go all the way to the feet with lymph edema, joint pain, neuropathy, and that all the organs in between can be impacted as well.

I didn’t know that most cancer side effects are not from cancer but the treatments to fight, eradicate, and prevent more cancer.

I didn’t know that in addition to chemo, one might contend with liver or kidney issues, with high or low blood pressure, with changes to the way heart beats, the digestive symptom works.

I didn’t know that cancer surgery might include a hysterectomy and removing some or several organs, lymph nodes and body parts I’d never heard of. I didn’t know how it’s impossible to know what is from cancer, chemo, menopause or the piles of pills one is prescribed.

I didn’t know how much the body can endure and still keep going. I didn’t know I’d have a body that would have to learn and know all that I was mostly ignorant about -even though cancer is a disease not unknown to my own family members.

I am still learning and knowing and going. I hope what I learn keeps others from having to have first-hand knowledge of the cancer experience.

And even as I say that I know the ways I’ve been changed are not all bad, hard, or grueling.

I didn’t know that at, even in the midst of being consumed by all things basic bodily functioning (breathing, heart beating, eating, pooping, sleeping, and staying alive), one can also be grateful, satisfied, and appreciate life and loved ones.

I know it now and feel grateful daily.

Five months after my diagnosis, I’m what’s called NED (No Evident Disease). It means that after surgery, and then 5 rounds of chemo, a carbo/taxol combination every 3 weeks, there is no sign of ovarian cancer. My CA 125, a cancer marker in the blood, is back to normal. Things are looking better today and I’m grateful, optimistic, relieved, but also know that my life is forever changed, and I’ll never be out of the woods.

Despite my NED status, my chances of being alive in 10 years are 15%.

Despite my NED status, my chances of being alive in five years are less than 30%.

Did you know 70% of those with ovarian cancer die within five years of being diagnosed?

I’m not a statistic, but a person – still, it’s hard not to do the calculations.

5 years from my diagnosis I’ll be 57, and my daughter 21.
5 years from my diagnosis, my partner will be 62.
Will we get to retire together, ever?  Will I get 5 years?

It’s hard not to wonder if some or all of those five years are what most would consider “good” years and how I will manage well no matter what? And how my loved ones will fare…

So I focus on moments, days, and now.

My new mantra remains, “In this moment….”

It’s how I approach all of my days.

I do think and worry about the future, and even plan for the worst while also planning for the best. Because the best is always possible.

What if, I’m the 15% and live for 10 or more years? What if I make it to 62? What if a new way to detect, manage, or treat ovarian cancer is discovered? What if I discover some synergy in remedies and medicines not yet combined?

Maybe I will see my kid graduate college or start a career. Maybe I’ll help her shop for furniture in a new apartment. No one knows the future. No one guaranteed more than now.

Maybe I’ll get to go to Europe with my partner, elope and return married, or stay forever engaged.

Maybe I’ll attend a mother-daughter yoga retreat with friends like I’ve always wanted to do.

Maybe I’ll spend a month at a cabin writing and eating good food with my besties?

Maybe I’ll be able to be there for my family members and friends the way they have been there for me?

Maybe I’ll get to walk my dog at the same beach and park, with my guy, my brother and sister-in-law, and our dogs and kids?

I don’t know how much time I’ll get or what life holds.

I know when my Nana died in her mid 60’s it seemed way too soon. I know that now, if I make it to my mid 60’s, it will be miraculous.

I don’t put as much into my retirement savings.

I think more about how to spend time, and money, now.

These are not negative thoughts they are the thoughts of someone contending with cancer and wide awake while pondering my own mortality.

“You won’t die of this,” some have said. “Cancer won’t kill you.”

But no one knows that for sure. It’s not an assurance the oncologists offer.

People mean well when they say such things but I no longer bite my tongue when I hear these words.

I say, “I might die of this,” (and I think, but don’t say, and you may as well).

I do remind people that we are all going to die and few of us will get to choose the time or place or method. It’s not wrong to acknowledge mortality. It’s not depressing and it does not mean one is giving up. I want to be responsible, and quickly, as I don’t have the luxury to be as reflective as I used to be because cancer is all-consuming.

I’ve barely had a moment to reflect on the past five months never mind the last five decades. I am trying to stay on top of the bare minimum requirements of being alive. I can’t yet keep up with emails or phone calls or visits. Projects and goals and plans of all kinds have shifted, paused, halted, or been abandoned.

My energy is now a resource I have to monitor and preserve. My will is not something I can endlessly tap into or call upon to motor me and keep me motivated. There’s no resource I have yet to tap into or call upon. Each day, I must consciously and repeatedly work to fill the well. And now, when friends and family who work while sick, I no longer think they are tough or strong. I think of how we routinely punish and ignore our bodies. I notice how often we run on fumes, require more of ourselves than we have as though we will never tire out.

I think of all those who must or feel they must keep going no matter what, without pause or rest, oblivious to the toll it will take or of those who have systems that can’t fight their germs. And I think of employers who sometimes require it because they offer no paid time off.

I used to run myself ragged. I used to say, “I’m digging deep, into my bone marrow if I have to.” I wasn’t being literal.

Now, when my iron and my platelets go low, I think of my old words in new ways. Now, even my bone marrow isn’t what is used to be.

I’m entirely who I always was and completely different.

It’s both.

I am more and less of who I was.

My life and days are simple and structured now and also heavy, layered, and complex. Who and what fills my day, by choice and not by choice, is radically different.

Cancer changed my life. That’s irrefutable and will be whether I live or die in the sooner or in the later.

I speak with and interact with doctors, nurses, life insurance and disability insurance and pharmacists more. I spend more money on supplements, clean eating, and make more time to walk, exercise, and sleep. There’s so much less I am capable of.

But sometimes, even without hair, I feel totally like myself.

Sometimes, like this week, my daughter caught me in the middle of life, reading a book, petting the cat, on my bed in my heated infrared sauna blanket. I was relaxed and at ease.

I shared this photo and someone commented on how my “cat scan” was quite feline, – the image brought a whole new meaning to the “cat scan” image.

I laughed and laughed and laughed. I’m still laughing.

In this moment, in many moments, I’m humbled by the enormity of all things cancer and being alive. That’s real. That’s there. It can be intense.

But also, in this moment, I’m laughing.

And laughing, it turns out, is my favorite way to live.