Tag Archives: Advanced cancer

So these are some realities…

I was at the Termeer Center at MGH for twelve hours on Thursday. First in, last to go.

And, just as two weeks ago—the previous time I was at the hospital—there was an awful lot of coughing going on, and this time it was clear the source was a staff member.

Fortunately everyone is wearing masks now but this individual was perhaps ten feet from me and we all use the same restroom as well. When shifts changed and they departed I walked out to the desk and had a discussion with the remaining two nurses as to how potentially upsetting this was. I asked if when a staff member is coughing if they are automatically test for COVID-19. The answer is no–staff fills out an assessment form in the morning that basically asks if there has been a change in symptoms. And this particular individual has had a chronic cough for seven years, of unknown etiology. The nurse said they don’t even hear it any more, which I suppose it not so different from the people who work at Starbucks who stop smelling the coffee.

However I explained that this was scant assurance for those of us on the ward, all metastatic cancer patients. And that I was unusually capable of advocating for myself but that others might not be. A center for targeted therapies/phase I clinical trials might not be the best place for an employee with a chronic cough.

I told them that I was totally self isolating, even to the point of driving myself to the hospital for infusion. And that MGH was the riskiest place I was required to go to in a world where I was likely to be denied a ventilator should I acquire coronvirus. That defense was my only chance.

They were both very sympathetic and expressed desire that they be tested on a regular basis (I mean, duh?). And then one of the nurses told me that when she gets home she strips down at her doorway and runs right to the shower, a scenario I repeated that evening.

As I paid for my parking I became aware that given the fact that there are less cancer patients at the Yawkey Center now, the garage is being used for those employees in the COVID-19 unit. I stood in line right behind a nurse who was just getting off shift. So yet another risk factor for exposure.

My youngest son called me that evening and I asked if he was doing a good job of social distancing, so that in the near future we might actually be able to see each other.

‘I haven’t been truthful with you,’ he responded. I braced myself for anything but what he shared was that an irresponsible roommate had brought someone to their apartment who was positive for COVID-19. And that several days later my son and another roommate had come down with all of the symptoms, including loss of taste and smell. And yet the health center at his university (MIT) had declined to test them.

My son was really sick for two weeks but has fortunately recovered. When I asked him why he hadn’t told me he allowed that he was protecting me, as I had indicated that even if he got sick, I would come. ‘And I know you would.’ he said.

I am glad he is ok. I am also angry with our country that more tests are not available and I share this so that you understand that any of the numbers we see as far as positive cases are simply not accurate. Far too many people are presenting with symptoms and if they are not desperately ill, famous or well connected, they are not being tested. This is falsely reassuring and poor science.

We must all be vigilant.

Oh yes you can

When it comes to life, I am not adverse to dreaming on a large scale (go big or go home). And yet I remain ineffably grounded in reality. Words such as scaleable and practical come to mind. And, my all time favorite, doable.

I like doable because it is a word that neither dashes hope nor over-promises. Doable simply says, this thing could be done. Put another way, it is possible. And that leaves a lot of latitude.

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And the phonetic rendering is absolutely charming…

When I first learned I had cancer and specifically, lung cancer–I knew I was heading into some stiff winds. However the little voice in my head said, ‘This is going to be hard but I can do this.’

That can-do attitude has served me extraordinarily well, and the word can’t has been pretty much excised from my vocabulary.

The truth is, some words just aren’t particularly useful. Take cure; that word is absolute bullshit. First of all, the meaning is nebulous: ‘relieve (a person or animal) of the symptoms of a disease or condition’. Secondly, the impact of a word like cure is potentially nefarious.

Everyone with cancer wants to be cured. Far too many of us have been told we never will be, that our cancer is ‘incurable’. The distinction/distance between these two supposed states–cured and incurable–is one of immense emotional devastation.

It you are incurable, than what can you possibly hope for?

Well, how about being healed. Whereas cure may be a technical impossibility, (and do remember, these are words, all words, not necessarily realities), healing is actually incredibly doable. The definition of healing is ‘to become sound or healthy again’.

So do it. Reframe the way you regard yourself. Discard that which is unhelpful and even hurtful. Embrace where you are at at right now. Heal yourself.

xo

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