How to be a badass when you’re not actually feeling it

Alright gang. Pandemic and bald head be damned, I am going on a first date tomorrow.

Yessiree bob. Social distancing will be observed (a walk followed by drinks on my deck—six feet of separation).

Truth? I am way nervous. Despite my flagrant display of said bald head in my current online profile, this is my first date ever sans hair.

Our coif. It defines us in so many ways (bad hair day?). It hides a multitude of sins—or at least it feels that way. Being bald is sort of like being naked times 100. Little wispy hairs on my head, no eyebrows, one eyelash—itself an outlier. Let’s hope my dazzling smile and personality shall provide enough distraction.

Were this individual not so compelling I would not put myself out there. However, we have so very much in common and are in total agreement that a pandemic with a partner sucks way less than one without. So, if sparks fly, I will potentially expand my bubble. Wish me luck y’all. Breaking some new ground here. In the unlikeliest of circumstances.

xo

Well this is going to be complicated…

I had scans yesterday and a zoom meeting with Dr. Lin and Dr. Shaw this evening. The ground glass in my right lung shows what appears to be more progression (but they are tiny right now). However, the area at the base of my left lung shows continued improvement.

This, and the relative lack of options, makes my decision harder.

Infusion is scheduled again for tomorrow but given that my mouth is still a mess of sores we are going to wait at least two weeks and then reassess. Ultimately it will be up to me.

Damn. I want to live but I also want to live well. My experience on this trial thus far has been pretty miserable.

However, Alice feels that if we let my mouth heal before another infusion, there is the possibility of ‘resetting’; that the side effects could become more tolerable.

I’ve got an awful lot to ponder.

xo

And some piece of mind

I have scans again one week from today. Two days later I am to review them and to have another infusion. I already know that my new oncologist will not be able to meet with me that day—I believe she shall be in the ICU. Younger doctors are being asked to fill all sorts of roles now—previously she was on the COVID19 unit. I am sure they are receiving a phenomenal education but the stress must be extraordinary. And of course, it is hard for their cancer patients as well.

Given the gravity of my decision (yes) I decided that it was best to get in touch with Alice. Yesterday I sent her this message:

“Good morning. Scans a week from Tuesday and I won’t actually be seeing Jess so thought I’d discuss with you. I have been pretty flipping miserable for weeks now—physically and emotionally. Last night my mouth/throat/tongue were the worst yet. Unless those scans show some very compelling reason as to why to stay on this I am done. Done to the point that even if there is not a good next choice done. If I have six months to live I’d rather not be miserable. If there is a good chance the MEK inhibitor will have similar side effects than it is not the drug for me. Honestly I have been so depressed that at times I have been ready to call it quits all together. However, given the possibility of improvement while retaining quality of life, I could rally. So let’s discuss what that might or might not look like.

She responded immediately and then called me later. This next scan shall be telling but my mind is made up per suffering—if it is for naught, I am not on board.

Today was better—the discomfort remains great but knowing that I have drawn a line in the sand I feel safer somehow. Just as it is powerful to know one’s strengths it is also imperative to appreciate one’s limits.

I love life. So very much. But pain is incredibly demoralizing and I have made the choice that for me, not how I wish to spend the rest of my time here.

Fingers crossed that there is an easier option.

QOL

I have always been about quantity when it came to life. More, more, more, more, more.

And I recognized that I might learn something from current circumstances, I just could not have anticipated what that might actually be.

Quality, my friends. Quality of life.

I never met a side effect that I couldn’t overcome before. But then again, I have never met said side effect while also experiencing the social isolation and general deprivation that is part and parcel of a pandemic.

In two weeks I shall have scans again. I have already decided that if there is not some compelling reason to continue this treatment regimen, I am out. Mucositis sucks more than I could have imagined. To the point that I would rather be sleeping than awake. Morphine has become one of my best friends. And that’s not a life of quality.

If there is something else to try with more tolerable side effects, I shall consider it. But I am also thinking—for the first time ever—that this might be a good time to bow out gracefully.

And that is part of my lesson. That just being alive is not necessarily enough. That sometimes the price you pay might just be too high.

Quality. The essential nature of being.

So….

I am grateful that I have a home.

And not one but two oncologists who care about me (Dr. Lin and–always–Dr. Shaw).

Kumo is a comfort if sometimes an unwelcome responsibility–thank goodness for Susan who spells me when I am getting treatment.

My family and friends have been fabulous–both those who are close and those who are far and some whom I have yet to have the pleasure to meet. Thanks for checking in and for taking care of me in so many ways.

Jemesii, August and Peter, you’ve done a fabulous job of doubling down on staying in touch. Now, more than ever, you are my raison d’être. I love you.

Netflix, alcohol, weed and sleep–you’ve all played a solid role in keeping me this side of sane as well.

What would I change? Well, first there would be no bloody pandemic. Yup. Could have lived a lifetime without this tragedy on a world scale.

Secondly, I would not be alone. Social isolation is proving to be one of the most difficult challenges I have ever faced. Too much me time and this girl has the potential to get weird. And under extraordinary circumstances? Well.

I’d also love to have a garden and a little yard. Perhaps a secret path to an isolated beach. Someone to hold me at night.

And hey–wouldn’t it be great to be healthy as a baseline. Not in treatment. Hale and hearty. Head full of hair.

There’s no winding back on this reality though. I understand how fortunate I am compared to many. And the little bit of kick ass that I still possess keeps reminding me that there is the potential for personal growth here. And that I am in fact in need of some tweaking (I keep having dreams about closets that I thought were empty only to discover that they are in fact packed with shit that needs to be gone through).

I’ve always been a good pep talker and these days, I am my primary audience.

To that end: ass off the couch. It’s not yet cocktail hour 😉

It is not just about you

To those of you–including our commander in chief–who are in a rush to ‘liberate’ your state. Shame on you.

And the young woman with the ‘My body, my choice, Trump 2020’ poster? Darling, that’s not how it works in a pandemic. Simple equation–you choose not to take precautions (wear a mask, social distancing) and you might well come down with coronavirus. At which point you–and your precious body–become a vector, spreading that disease to others.

Chatter about the silver linings of COVID-19–don’t even. I mean, if you are ensconced with your loved ones in a gorgeous home with plenty of food, go ahead and think it. But don’t fucking say it aloud.

For far too many of us, there is no upside to this situation. Nope. It sucks and then sucks some more. If we are lucky, we (and our loved ones) will live through it. But in the meantime, our finances, our morale, our hope–have all taken a hell of a beating.

In four days I head back into Boston for yet another infusion. MGH, the epicenter of an epicenter when it comes to coronavirus. Risking my life while trying to save my life. Nothing fun, shiny, or redeeming about that.

Rather, it is frightening. Bloody hell hard. At times I wonder if it is worth it.

But then my survival instinct kicks back in. The odds have not been in my favor for fifteen years now. Unfavorable plus unfavorable equals less favorable. But familiar. Achingly familiar.

This is not a drill

So here we are–perhaps a month into what is likely going to be a long haul.

Can’t say I’m loving it but, as humans are won’t to do, I am adjusting.

Yep. Perhaps it is the up-dose of Prozac, or at least in part. I also think I am simply acclimating to a non negotiable circumstance.

Interestingly, this particular situation has proved a trigger for earlier traumas. I am assured by a therapist friend that this is not unusual. Discomfiting, perhaps, but also instructional.

Clearly I have benefitted greatly from distraction. Now that it is me, myself and I–there is really nowhere to turn but inward. And it would seem I have some unfinished business.

In every crisis there is opportunity. I have some major detoxing to do, which is how I am choosing to look at this particular challenge.

Mental housecleaning, and with all this time on my hands, I am getting to those corners which have been easy to overlook. There is the potential for a squeaky clean start to whatever comes next.

The trick is believing. In the future itself as well as the strength to get there.

xo

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.