Bugaboo

Nope, it’s not COVID-19, although that is obviously a continuing source of anxiety.

My bigger problem right now is depression. Unlike coronavirus, there is no potential for avoiding this situation.

Depression runs through my family like a deep vein of coal. Sometimes it is easy to say my underlying sadness is situational, other times it just is. Like a shadow, some sort of darkness has always remained attached to me in one way or another.

Fortunately I have found ways to address my mood disorder. Counseling, antidepressants. But also diversion. If I am busy enough, it is generally sufficient to overcome.

What is happening right now is a game changer. Extroversion is part of my natural defense against despondency. And never in my life have I gone three weeks with no one touching me unless they were taking my blood pressure, attaching EKG leads, or poking me with a needle.

Sure, I have Kumo, my little white dog. He is an amazing comfort but it is not the same as the company of a human being.

I find myself arising in the morning only to go back to bed. I would rather sleep than do anything else and that is simply not normal.

Yesterday I asked my oncologist if we could double my dose of Prozac. This is a first for me, and I am hoping it is temporary.

However I am determined that I shall not be brought down by my very own demons. In some ways, this is the most difficult thing I have ever done, because of the complete and total social isolation. Desert islands are not my idea of paradise. I need contact–I need people. But I also need to make absolutely certain I don’t come down with COVID-19.

FIFTEEN


Oh yeah. I might not have noticed if one of my friends had not brought it to my attention. Yup. Just kinda snuck in there—fifteen years ago I was diagnosed with lung cancer at the age of 45. Now I’m 60.

Mind blowing, all of it. Were I not social isolating and frankly so damn depressed, I’d throw a party. I guess we’re just going to have to call a raincheck.

This coming year may be the diciest yet when it comes to survival but there will be no throwing in of the towel here. Just going to have to work on some new coping mechanisms. I have gone on record saying I like a challenge…although a global pandemic was not exactly what I had in mind.

Anyway, big love to all of you. Literally could not do this without you and I am imagining one giant virtual group hug.

xoxoxo

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.

I shall not step aside quietly

Remember the concept of noblesse oblige? That those in a place of privileged circumstance have a moral obligation to help others who are less fortunate?

That concept is being turned on its head, like everything else in the world right now.

I have been at the hospital since early this morning. Labs, EKG’s, infusion of saline and now drug. Long, long, weird day and it won’t end until evening.

This morning my nurse asked if I had driven myself from Amesbury to Boston. Yes, I replied. Two different friends had offered to help–one dropping me off, another picking me up and taking me home. But aside from the great inconvenience for them, I decided that I was likely safer driving in alone. I mean, social isolation is social isolation to the greatest degree possible and at this time, the only people I am spending any time with are those who are absolutely necessary–my oncology team.

Anyway, I explained to my nurse that given the fact that I would likely be denied a ventilator should I be unlucky enough to contract COVID-19, my best chance of survival was defense. I cannot get sick.

She replied with an anecdote illustrating that not everyone with COVID-19 wants to go the ventilator route, a reference to an older architect in a neighboring community. “How old?” I asked. 83. Old enough to be my father. And when I asked if he had survived she said no, ‘That’s why the paper did a story about him.”

Oh yes, I said. They like to suggest that it is a noble thing for those of us who are older or with a preexisting condition to step aside. And then, “Fuck that shit.

“I haven’t been fighting like hell for fifteen years to stop trying now. I deserve a continuing chance at survival just like everyone else. Ask my friends. Ask my family.”

I imagine she was somewhat taken aback. But It is not on the cancer patient to demonstrate noblesse oblige. We are the vulnerable, not the privileged.

Obviously diplomacy isn’t my strong suit.

After she left the room I pulled the once warm blankets over my head and fantasized that in the sequel to Mad Max: Fury Road I would be cast as Charlize Theron’s long lost mom.

That’s a role I’m better suited to.

Scan skinny

I had my scan a week ago and Dr. Lin called me the following day with her impression–Alice followed up on Saturday.

One of the most difficult aspects of being an oncologist is trying to keep both body and hope alive for patients. Jess (Dr. Lin) and Alice both felt the the subpleural opacity in my left upper lobe was possibly less dense than previous scans–‘more aerosolized’ is the way Alice put it. Maybe whatever the heck that is (never definitely labeled cancer) is partially resolving, and therefore accounting for the improvement in my breathing. It would be nice to think so.

I did not receive the official read of the scan until today and I must say, it is lackluster; said with all due euphemism.

Keeping body and soul together is getting to be more difficult for me as well. Neither of the last two treatments would appear to be a panacea. And social isolation is sapping me of my usual reserve of joy. These times were not made for extroverts.

Now my job is to just hold it all together in what sometimes feels like impossible circumstances—if I can avoid getting COVID-19 and keep this cancer from moving from a brush fire to burn the whole goddamn house down, well then I might be around when another treatment becomes available.

My general MO is to overcome and forge ahead—if you told me I had to walk 100 miles today I would be game to try. Laying low is an entirely different animal and I’m not gonna lie, one heck of a reach for me. But I am going to do my darnedest to hang in.

 TECHNIQUE: Diagnostic CT CHEST WITH CONTRAST COMPARISON: Chest CT dating back to 1/18/2019
FINDINGS:Lines/tubes: None. Lungs and Airways: Status post left lower lobectomy. The central airways are patent. There are new groundglass and tree-in-bud nodules in the anterior right upper lobe for example on images 49-51. There are also multiple enlarging subsolid nodules in the right upper lobe for example image 49 nodule measures up to 8 mm compared to 5 mm prior. Multiple nodules in the left upper lobe has also increased in size and attenuation compared to recent prior, for example spiculated nodule in the right upper lobe on image 53, measuring up to 10 mm compared to 9 mm prior, image 44 nodule now measuring 4 mm compared to 2 mm prior, and subpleural nodule on image 43 measuring up to 8 mm compared to 7 mm prior.  The dominant subpleural consolidative opacity along the lateral left upper lobe is essentially unchanged compared to recent prior now measuring 17 x 29 mm (image 64). The confluent consolidative opacity at the left lung base is without significant change in size compared to recent prior, measuring 77 x 20 mm (image 80). Pleura: Stable small loculated left pleural effusion with associated pleural and interlobular septal thickening. There is unchanged biapical pleural-parenchymal thickening/scarring, left greater than right. Heart and mediastinum: The thyroid gland is normal. Stable mediastinal and hilar lymph nodes measuring up to 6 mm in short axis, for example low pretracheal node on series 302 image 42 and AP node on image 46. The cardiac chambers are normal in size. There is no pericardial effusion.  Soft tissues: There is no significant subpectoral or axillary lymphadenopathy. Abdomen: Please see separate CT abdomen and pelvis report of same day.  Bones: There is moderate spinal degenerative changes. No suspicious lytic or blastic lesions. 
IMPRESSION: Lung cancer surveillance status post left lower lobectomy: Subpleural consolidative masslike opacity along the lateral left upper lobe is unchanged compared to most recent prior but remains suspicious for primary lung malignancy. Stable small loculated pleural effusion with interlobular septal thickening consistent with lymphangitic carcinomatosis. Enlarging pulmonary nodules bilaterally since at least 7/5/2019 suspicious for progression of metastatic disease. New groundglass and tree-in-bud nodules in the anterior right upper lobe may represent inflammatory or infectious process. Attention on follow up is advised.

Not

My daughter Jemesii was incredibly articulate from an early age. She, who at the age of two, asked me where our thoughts go at night. And then on another occasion, while driving in the car, wondered why the moon kept following us.

I have always bowed down to her wisdom.

Once she learned how to write she would express her frustration and anger through little notes, which she would throw in my general direction before running off.

No, they would say. No no no no no.

And that just about sums up how I feel about the world right now.

One big no.

Well damn.

I was certain this scan was going to show improvement. Yeah, based on my symptoms (no cough, only a teensy little wheeze) that I was responding.

Sigh. Dr. Lin called today after reviewing the scans and she feels that overall there may be some stability. But that there are some small spots that actually seem to be larger.

Not the news I wanted considering the side effects of treatment. My mucositis refuses to stand down even with the addition of morphine (not a mouthwash as I had originally thought, but an elixir). At the moment I have one very large sore under the right side of my tongue and four smaller ones on the left. Eating is a formidable challenge and I have lost about ten pounds since starting the trial. So we are going to delay infusion by a week.

Of course I asked about other options, given the lackluster response. We could return to the previous plan, lorlatinib plus a MEK inhibitor. That trial has yet to open but rumor has it it still will and soon.

So I guess DS-1062a might not be the drug for me. Again, damn.

In the meantime all I can do is keep trudging forward while trying to keep it all together. Physically, emotionally, spiritually.

This is tough–really tough.

Little update

I had CT scans and an echocardiogram at MGH yesterday. This time everyone was wearing masks. I had brought an N95 with the little plastic respirator, and while I was in the waiting room (alone), a nurse came out and explained to me that although my mask would protect me, if I had coronavirus it would not protect the health care workers (air flow in and out). So she brought me out two surgical masks and asked me to put them on instead. However two made me a little panicky, as it was difficult to breathe, so I removed one of them.

Evidently I made it out of MGH just in time, as shortly after my departure five explosions rocked the street—not a dumpster fire (!) but rather manholes that were on fire. If it’s not one thing, it’s two. Or five.

Tomorrow I have another infusion scheduled. Unfortunately my mouth sores have not healed–a less than ideal scenario. However we will be going down in dose and unless the CT scan indicates otherwise, it is my sense that my cancer is responding to treatment. I would like to get the mucositis/mouth sores under control, but even if I can’t, I feel it is best to get a few more doses under my belt.

I’ll let you know what those scans say…

xo

Analagous

Once upon a time I had a roommate who had a very high IQ (physics major at Yale) and equally low EQ. He had invited me to share a meal with him and once it was prepared, he set out a single plate and then sat down to eat. ‘What’s going on?’ I asked. ‘Oh,’ he said. ‘It turns out there was only enough for one.’

I will never forget it.

Today’s NYT had a powerful opinion piece on disabilities and coronavirus—the whole sacrificed for the greater good concept that I have been railing against.

The meal analogy is useful here. If you organized a dinner party only to discover that there was enough food for five and you had invited eight, would you tell three of the guests that they must go hungry? And would you base that decision not on whom was most in need of a meal, but rather on who was not. Malnourished, adios, well fed, you stay.

It’s an impossible scenario with so many more humane and logical outcomes. You could make smaller portions, so everyone got less but some. Or you could simply make more food, so no one went without.

That is what needs to happen here, in America. Rather than having conversations about difficult choices should we (rather, when we) run out of ICU beds and ventilators, let’s ramp up production.

To do otherwise is going to create a situation that is impossible to recover from. Obviously for those who are consigned to certain death, but also for those making hard choices.

Choices that are difficult to live with.

How bias takes hold

One word at a time.

Calling COVID-19 China Flu? That’s a potent example.

Language matters. Here in Massachusetts, there are now two fatalities from coronavirus. In both cases, their advanced age as well as the fact that they had underlying conditions was reported.

This is the sort of thing that reassures the young and healthy. But for those of us who can’t fall back on the innocence of youth or robust health? It is increasingly unsettling. And not so very different from the ‘did you smoke’ question that those of us with lung cancer are so often asked.

Bias. About to be put to practice in extremis, as it becomes necessary to make hard choices as to who gets an ICU bed and a ventilator.

Sharing the age and comorbidity status of victims of coronavirus only underscores the growing argument that certain lives are less worth saving than others, an ugly notion any way you spin it.

As someone who is an old hand at surviving incredibly poor odds, I pay scant attention to statistics. And I warrant that if I become ill with coronavirus and am provided supportive medical care, I may survive this as well.

Hopefully I will never have to find out.