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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

With and without

It is easy to focus on what we need. Rather, what we think we need. It is the sort of mentality that leads people to clear the shelves of goods like toilet paper, now considered an essential. However, I assure you that for most of our time on earth, our species made do without the luxury of little quilted pieces of paper with which to wipe our ass.

I have had the benefit of being poor. Under the federal poverty level sort of poor. Food stamps and then welfare, while trying to raise two small children alone.

It sucked, but I also learned a lot. Including what we could do without.

I got into the vintage clothing business because I couldn’t afford to shop anywhere but thrift stores. Now when my kids look at photos of themselves from their youth, they think they look pretty damn hip in their second hand clothes.

After marrying for the second time I enjoyed a period of relative prosperity. Not gonna lie, it was nice–not having to worry about money all of the time. However, when I made the decision to leave the marriage, my economic situation changed once again. Not quite as dire but given my medical expenses, nonetheless challenging.

However several things have gotten me through. One, my amazing friends, who magically fill in the at times gaping gaps. Creativity and the ability to make a killer meal from rice, an onion, coconut milk and some peanut butter. And if finances allow, I add chicken plus some cilantro or basil. Maybe a few peanuts. Cheap, filling and delicious.

Most importantly, understanding what I can do without. Less really can be more.

Scaling back one’s needs is incredibly freeing. It reduces consumption and anxiety.

This is a tough time—for all of us. But if we stay calm and look out for each other, we are going to get through this in better shape than if we do not. Remember what is truly important. Love.

And unlike toilet paper, it’s not about how much you take but rather how much you give away.

xo

Almost apoplectic per the apocalypse

When times get rough, alliterate.

Seriously though, this is not how I saw it all going down.

Snow days, power outages, hurricanes, 911–all gone through in the company of family and community. Hunkering down and making forts out of couch cushions and blankets. Lighting candles, having potlucks, hugging each other a little tighter at night. Whatever was afoot, we were in it together.

On The Beach was a dystopian novel from my youth that made a big, big impression on me. Nuclear annihilation, in the form of a radioactive cloud, spreading from continent to continent. In one moving scene a character returns to his home town only to find the skeletal remains of his parents in bed together. It was both horrifying but also comforting—to be in the arms of a loved one when the end came.

Now we are facing some sort of world wide threat which, though not Armageddon, is none the less quite serious. And I am in the unfortunate position of being both exquisitely vulnerable and most decidedly alone.

My friends and family are checking in and making sure my needs are met. It is so very kind and a source of great comfort. But it does not change the fact that I am now socially isolated.

Last night my mucositis was so painfully intense I could not fall asleep. I am also dealing with some sort of virus, but it appears to be garden variety as I have no cough and my breathing has not been compromised. However, physically I am in a weakened state. Dr. Lin called to check in yesterday and discussed the possibility of going further down in dose. Fortunately I have a CT scan prior to my next infusion, and that should help guide our decision.

In the meantime, I have decided that if I can get through the next few weeks, I can get through anything.

xo