Author Archives: linnea11

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.

Am I ok with this?

No.

I learned a long time ago that no one was going to be a more formidable advocate for me than me. Simply because–plainly stated–my life matters more to me than it does to anyone else.

No apologies. Self survival is a primal instinct.

However, I never thought I would get to a place where this was actually called into question.

Now, however, with the coronavirus ravaging the planet, I am forced to argue for my right to live.

Yes. Obviously much of this is out of our individual control but I would like to think I at least have a fighting chance.

That I, an individual who has beaten the odds for fifteen years now, should be given a shot at continuing survival.

It is incredibly demoralizing to understand that should I be unfortunate enough to contract coronavirus (despite my every effort to isolate) I might be denied supportive treatment. Based simply on my age and comorbidity (stage IV lung cancer).

It bites to know that those young people who were cavalier enough (selfish?) to crowd the beaches of Florida during spring break would be an instant priority. That I, who have fought like hell to stay alive for one and a half decades now, would be considered a non–priority.

Seriously? How is this going to serve society in the long term? I thought death panels were a thing of rumor, not reality?

My best hope of survival is to make certain I do not contract COVID-19. However, I understand better than most that this is not something I can control. Shit happens.

However, should that particular shit happen to me, I will not go quietly. I do not approve of a system or society that bases triage on chances of survival. Honestly, first come, first serve is fairer, in so much as it does not have inherent bias. That bias is bad for all as it is potentially nonrecoverable. I would argue that as bad as it is for me, it is also something that is going to be difficult to reconcile for those who have to make the call.

Don’t give up on us. Just don’t.

This isn’t normal

But it’s the new normal–for the foreseeable future.

I drove to Boston yesterday for IV fluids. Before leaving the parking garage I put on both an N95 mask and latex gloves. When I got to the lobby a security guard directed me to the front desk where I was asked to check in; essentially confirming that I had an appointment. No visitors are allowed so those who accompanied patients were asked to wait downstairs.

When the elevator got to the seventh floor, I was met by a trio of nurses in full protective gear. They asked me questions (have you travelled to Italy, Iran or China…) and then took my temperature. Then I was allowed to proceed to the Termeer Center.

Once there I took off my mask and gloves. Shortly after being led to my room, the patient across the hall started coughing. Eventually a nurse came and I heard him ask her if this was a new thing (coughing) and then told her she’d have to wear a mask.

Sigh. I brought it up with my nurse who acted as if I had inappropriately mentioned a stain on the floor. I said it was getting harder to be a cancer patient and she responded that it was becoming more difficult to provide medical care.

Well yes, but being a care provider is a career choice, whereas being a cancer patient is just shitty luck. And, should she come down with coronavirus, they would still treat her.

Hate to be the bearer of bad news, but my predictions per triage are likely going to come true. I was interviewed for this article by Liz Szabo of Kaiser Health News pertaining to the shortages of ICU beds and ventilators and how it might impact my community. More disturbing yet is the story in today’s NYT about the discussion as to prioritizing care held by hospital representatives in Washington State.


They look at the criteria — in this case it would likely be age and underlying disease conditions — and then determine that this person, though this person has a chance of survival with a ventilator, does not get one,” Ms. Sauer said.

This is a shift to caring for the population, where you look at the whole population of people who need care and make a determination about who is most likely to survive, and you provide care to them,” she said. “Those that have a less good chance of survival — but still have a chance — you do not provide care to them, which guarantees their death.

As I stated in the earlier article, “Those of us with lung cancer are among the most vulnerable,” Olsen (sic) said, “but instead of being viewed as someone to be protected, we will be viewed as expendable.”

It is an incredibly frightening and uncomfortable position to be in. Knowing that when the time comes, those of us with underlying illnesses will be sacrificed for the greater good. Not by choice, but rather by consensus/mandate.

In the meantime, my best chance for survival is to avoid exposure. Because if I do get coronavirus, I am likely screwed.

Care as we know it…

…is changing in this rapidly evolving world of COVID-19.

Yesterday there was a twitter chat (amongst medical professionals) that posed the question whether late line chemo should, under the circumstances, be suspended. To my horror many of those chiming in were on board and amongst the comments (the first by the individual who made the original query) were these two gems: ‘…the resources will be needed elsewhere!‘ and’…tying up space and health care workers in chemo war that would be more useful in triage, ICU, ER, etc…’

For the sake of clarity, the post that got me going was this: ‘Oncology Twitter: uncomfortable question. Hospitals are suspending elective surgeries in prep for COVID. Should our field be suspending some chemo–late line, minimal evidence for benefit, etc? Or at least not starting new regimens?

The author is an MD, MPH in medical ethics and health policy.

My response:

Technically my official expiration date was twelve, not thirteen years ago but I was in a state as I posted my response. Livid, actually.

Have we come to this? Advanced cancer patients to the back of the bus/bottom of the food chain? Because my life is worth less than that of a previously healthy person?

Today I spoke to Dr. Lin, my other oncologist. On Thursday I am scheduled to go to MGH for pharmokinetics and a physical, but as these are nonessentials, that appointment would now be virtual. However, I am having a devil of a time with the mucositis. Jess wants me to come in on Thursday for some IV fluids–it is difficult to eat–and to pick up a hard copy scrip for a mouthwash with morphine in it. And we will definitely be going down in dose again.

I asked her if I needed to worry about the trial being scuttled and she responded that they are keeping a close eye on things. That is not yes or no but I understand that we are all making this up as we go along.

I also shared with her the gist of the conversation on twitter, telling her that such sentiment was a source of great anxiety in my community (as if we need more to worry about). She was incredibly sympathetic and supportive and after our conversation, sent me this message:

It was good to talk on the phone.  I just wanted to follow up on what you had shared with me earlier. You (our patients) are so important and special to us.  And so I am so sorry to hear of all of the anxiety and fear that this situation has been causing the community.  It is, of course, not surprising: This has – needless to say – been an incredibly challenging time, full of fast-paced change and uncertainties.  But one thing you can be certain of amidst these uncertainties, is that we will continue to be your physicians and advocates during this time.  We are doing this together, and we’ve got you.’

Which is exactly what I/we need to hear.

xo