Uncertainty

My pericarditis broke through yesterday, to use my cardiologist’s term. I noticed the subtle but unmistakable chest pain on inhalation, and didn’t need to see a doctor or even have my vitals checked to know what was going on. Pericarditis is inflammation of the pericardium, or sac around the heart. In its moderate form, it causes pain on inhalation; in its more severe form it can cause tamponade. This is when the pericardium is rigid or inflamed enough that it squeezes the heart, restricting the heart’s ability to pump. Consequently, blood pressure falls, and heart rate rises as the heart tries to compensate for reduced efficiency by pumping faster.

I first contracted pericarditis in February, when it landed me in the hospital for two extended-stay-deluxe visits. This is my fourth recurrence. I have become so familiar with the symptoms I can almost guess my blood pressure and heart rate.

So I’m starting the cycle over with high-dose steroids to beat back the symptoms, and then will try to wean off the loathsome drugs. I was down to 10 days of my last steroid tapering regimen, and had hoped I might squeak through without a recurrence. But as the on-call cardiologist today matter-of-factly said, I “failed taper.”

I don’t have much expectation that it will work this time, and am eagerly awaiting an appointment later this month with a rheumatologist who will, I hope, have some alternative ideas for beating the inflammation at the root of the problem. I don’t know if the steroids are making me moody and sleepless, but I’m sure they’re not helping! And that’s only the tip of the iceberg when it comes to problems with long-term corticosteroid dependence.

As for cancer, it’s hard to think of myself as done with treatment. This is partly because of the ongoing heart issue and my unresolved hormone issue. I also don’t feel like the cancer is fully eradicated. Perhaps someday I will, but at this point I am wary. It was shrunk with chemotherapy, visible traces were removed by surgery, and any lurkers were nuked with radiation. We will continue to try to starve any tenacious cancer cells with ten years of hormone therapy. But with recurrence rates so high, obviously in many cases there are some cancer cells that withstand the slash-burn-poison-starve assault; perhaps they will lie dormant forever, perhaps not.  

According to cancer researcher Dr. William Li, cancer is far more common than we may realize:

“Autopsy studies from people who died in car accidents have shown that about 40 percent of women between the ages of 40 and 50 actually have microscopic cancers in their breasts, about 50 percent of men in their 50s and 60s have microscopic prostate cancers, and virtually 100 percent of us, by the time we reach our 70s, will have microscopic cancers growing in our thyroid.”[1]

It’s not so much a question of whether cancer cells are present as whether those cells will find an opportunity to flourish and grow. In my case, acute stress probably weakened my defenses and somehow created a pathway for the cancer to multiply.

This prevalence of what I’ll call quiet cancer is one of the reasons it is hard for me to believe, on a gut level, that my cancer is entirely gone. I’m not ready, and I may never be, to talk about cancer in the past tense: “I had cancer.” Maybe it’s like alcoholism, where you may be clean and sober for years but you know the possibility of relapse always exists, so you say: “I’m an alcoholic. I’ve been sober for 18 years.”

So I am disinclined to think of my cancer in black-and-white, here-then-gone, terms. A woman shared a succinct and forthright post along these lines in the stage 3 section of a breast cancer discussion board:

“Do you notice people asking about your health seem to have the idea that the doctor pronounces you cured or not at some point in treatment? I have the same conversations over and over-- people ask how my health is, I say I'm doing fine, meaning day to day I'm feeling pretty good. They often push further, asking about my follow-up schedule, or say something like ‘so are you in remission?’ or ‘so they got it all, right?’ or the dreaded, ‘so they caught it early, right?’

“I never know quite what to say.  On the one hand I'm angry at people's naivete and want to contradict the false narrative of early detection and happy survivor-ship. On the other, I don't want to educate them about the long term prognosis and become the object of pity and fear again.  Mostly I just don’t like being reminded of the uncertainty of the outcome. It was such a bitter pill to swallow in the first place.”

People want reassurance that we are ok, but the truth is, for many of us our prognosis is ambiguous. You can enter an array of data from your pathology report into a clinical calculator that will spit out the likelihood, in percentages, that your cancer will return within five and ten years, respectively.

Woe is she who discovers the clinical calculator.[2] My doctors and nurses warned me off it for a reason: in real life, outcomes vary wildly. Just as we don’t know exactly why certain people get cancer in the first place, we don’t know whose cancer will return, and when, or why.

The strongest among us take the uncertainty and translate it to a renewed commitment to live and love fully. I can’t say I’m there yet, but I’m working toward it. This poem a friend shared tonight helps pull me in the right direction:

Dust if you must

By Emma Jane Rae

Dust if you must, but wouldn’t it be better

To paint a picture or write a letter,

Bake a cake or plant a seed,

Ponder the difference between want and need?

Dust if you must, but there’s not much time,

With rivers to swim and mountains to climb.

Music to hear and books to read,

Friends to cherish and a life to lead.

Dust if you must, but the world’s out there,

With the sun in your eyes, the wind in your hair,

A flutter of snow, a shower of rain. This day will not come around again.

Bust if you must, but bear in mind,

Old age will come and it’s not kind.

And when you go – and go you must –

You, yourself, will make the dust.

 

---

[1] http://www.ted.com/talks/william_li

[2] Now that I’ve advised against it, I will tempt you with a link: http://www.mdanderson.org/education-and-research/resources-for-professionals/clinical-tools-and-resources/clinical-calculators/index.html

Alder's Lego school bus on elevated tracks.

On our Bainbridge deck.

And some snapshots from our trip to Juneau last week....

 

Oceans, mountains, boys and chickens at our friends' magical home. www.tidewatcherrental.com

Our one ski (half) day of the year! Love Eaglecrest. 

We finally got to visit our friend Marc's new cafe, Coppa. Alder got to help Marc make ice cream.

How Alaskans enjoy the beach.