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.

6 responses to “So these are some realities…

  1. Linnea, I am so glad your son is better. I wonder if his antibodies make him a safe person for you to be around now. So sorry you are going through this alone:( Wendy

    On Sat, Apr 4, 2020 at 5:27 PM life and breath: outliving lung cancer wrote:

    > linnea11 posted: ” 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 last 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 m” >

  2. Having just read an article in the NYT about the facts of being ventilated for Covid 19 I am thinking if it comes to that, I would refuse to be ventilated. From facts as can be gathered, the most optimistic statistic is that the majority of patients don’t survive and those that do can have permanent damage to organs. At best, and for younger patients, getting back on your feet takes months. Covid 19 takes weeks of being ventilated unlike other conditions where someone is ventilated for a few days.
    Glad your son recovered and that you only knew after the fact!!
    I am on a review board and a member has a chronic cough. It’s unsettling even before Covid 19. Unthinkable in your hospital setting.

  3. Linnea, Yes, this is a nightmare. At this point, it is safest to assume that anyone who is out in public may be an asymptomatic carrier. Our health dept was boasting that we have no cases–I told the paper that a) I didn’t believe it and b) How would they know, since they aren’t testing. I am furious at the spin that dupes the public, rather than being honest with them.
    I’m sure you know all this, but I find this post from a bone marrow transplant survivor to be the most helpful information I’ve read: https://medium.com/@amcarter/i-had-no-immune-system-for-months-after-my-bone-marrow-transplant-1b097f16040c
    I’m glad that your son is better

  4. I had a feeling these stats were inaccurate. It’s worse than we know. I’m glad your son Peter is ok.

  5. You are incredibly strong and I hope your strength will carry you through this rotten time. Take care of yourself please.

  6. Julia Kristen Gaynor

    Linnea I’m so sorry you’re having to endure this. I’m curious if you and your doctors have considered pausing treatment now to avoid any chance of you contracting COVID? Are the current benefits worth the risk? I’m sure you’ve had that conversation, and I’m sure it’s not a decision that would be easy to make, but every time you write about going to MGH I feel terrified on your behalf. 😦

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