Tag Archives: COVID-19

And here I go, reacting

Can’t help it, y’all. As I scramble to come up with the money to pay last years taxes, it hurts, actually hurts, to know that those who participate in clinical trials for a COVID-19 vaccine are being compensated.

Read this article from the NCBI and weep. Tell me, again, why it is that those of us who are both unfortunate enough to have contracted terminal cancer and also desperate enough to stay alive that we will do almost anything, are somehow a different story. Are we too not deserving of assistance and recognition “for the fair value of…time and effort expended in research participation?

And how about this paragraph rationalizing compensation for vaccine ‘volunteers’: “Compensation also should be viewed as the ethical default because it helps to minimize the chance participants will be exploited by receiving benefits that are disproportionately low compared to the burdens they undertake and the value they contribute to research. While the prospect of direct benefit is relevant to avoiding exploitation, research benefits are not always present and are never certain. Thus, it often makes sense to compensate participants for their work via a wage-payment model, using a fair local wage for similarly burdensome nonresearch endeavors as a benchmark. This is not intended to make participants better off as compared to their financial baseline or even to fully compensate for participants’ opportunity costs but rather to acknowledge the value of their time and effort. Compensation can also help distinguish research activities, with their distinct goals and risks, from clinical care, signaling that participants are contributing to science and that individual benefit may not result from their research participation.

Um, yeah. I can hope like hell that when I participate in a clinical trial I shall attain some personal benefit, but–particularly in phase I where safety versus efficacy is being assessed–it’s a crapshoot.

So why why why why why why why are cancer patients treated differently? This is a human rights issue. I am/we are more than our tissue. Those of us dealing with advanced cancer are desperately ill individuals who are taking on tremendous risk and burden in order to A. hopefully live longer and B. advance medical research—A being the far dicier of the two propositions.

And then there is this curious sentence: “We argue that reimbursement and compensation should be offered in COVID-19 trials as a matter of fairness, as is true for other types of clinical research.” I’m all for the fairness part but clearly they are talking about medical research with ‘healthy volunteers’, not those of us with cancer.

Thanks to COVID-19, clinical trials are having a big ass moment right now. Let’s not waste this opportunity to have some constructive dialogue per ongoing issues related to medical research such as disparity, accrual and compensation. And while we’re at it, let’s stop hiding the dirty little secret that exploiting cancer patients didn’t stop with Henrietta Lacks.

We can, and should, do better.

What’s not helpful

If a plane that you are riding on crashes–killing all on board and yet you somehow survive, saying that ‘God must have a plan for you’ is not helpful.

And if I were to try to convince you that the fact that I have been surviving lung cancer for fifteen years is attributable to much more than right place, right time, right oncologist, I would be lying. Chance, luck, whatever you want to call it. It’s a bloody crapshoot.

How about COVID-19? Our commander in chief, positive for the virus but now fully amped up on dexamethasone, is telling the world that it is no big deal. Tone deaf, at best. Amazingly and incongruously insensitive at worst, given the fact that more than a million people worldwide have now died from the corona virus.

Humility is an underrated quality. Empathy and compassion for the suffering of others, well, without that, frankly, what’s the point. The absolute essence of humanity should be caring. And not just about ones self. We are, like it or not, all connected. What hurts one hurts another.

So let’s do our damndest to help. And you can start by wearing a fucking mask.

A time of tender mercies

I have never been one to look away. Knowledge is power, right?

When I get up in the morning I make coffee, check my email and then go straight for the news.

For the first time in well, ever, I sometimes feel as if I just don’t want to know.

Global warming, the world on fire, COVID-19, rampant racism and divisiveness. We’re not coming together, we are falling apart.

It’s weird, as my own world has been imperfect for so very long now. You might think I’d be inured. As it turns out, misery does not always like company.

There is no comfort in worldwide suffering. None. Dystopia was once in the realm of imagination, a plot line to be enjoyed from the comfort of ones couch.

Sure, part of what made it all so compelling was the whiff of danger–the possibility that cataclysmic events might actually lie in the future.

But most of us thought that would be later rather than sooner.

That was before the year 2020, when the shit hit the fan all at once.

Our collective challenge is adapting on the fly. Trying to maintain a semblance of normality while also understanding that some things are never going to be the same.

The optimist in me says we can do this. The realist understands that it is not going to be easy.

Eight down

Difficult to believe that August is almost over. A friend of mine noted on twitter that the past eight months have felt both interminable and also fleeting. Perhaps it is the disconnect between what we previously considered reality and the space we now exist in–the year that just keeps on giving. And taking.

On Thursday I had my eighth dose of DS1062-a. Cycles seven and eight have been on schedule–three weeks apart. And because of that I am back to dealing with some side effects. My ninth dose will be pushed back by a week or two, which I am totally on board with.

Infusion kind of knocked me on my butt this time. Not day one, where thanks to the additional boost of steroids, I powered on through. I drove myself in at an insanely early hour (check in, 7 am) and didn’t get back home until almost twelve hours later. But I still managed to make myself dinner.

However yesterday morning I hit the wall. Couch surfing and then early to bed and late to rise. And I’m still wiped out.

I have never been adept at feeling poorly, as I have no affinity for inaction. Impatience is one of my prevailing qualities. By chance (or not?) my psychic energy is at an all time high right now (plans, big plans); kicking back is not on the roster.

Balance, pacing myself, making certain I don’t bonk are the takeaways in the days post infusion. That and a quiet gratitude that as strange as life now is, I’m here–experiencing it.

The bad, the ugly, but also the good.

xo

All for me

I think (and if I were speaking my cadence would get real slow right now…) one of the most difficult adjustments as part and parcel of this pandemic is me.

I am simply not accustomed to this much alone time. It’s ok, as in, I can do it. But sometimes it fucking sucks.

If I cook, or clean, there’s nobody who’s going to care but me. Same if I choose to not cook or clean.

On the one hand, that’s kinda nice; in a cut myself some slack sorta way. But then again, it gets old. Really fast.

I suppose that’s because I’m not out to entertain/impress/interact with myself. Nope. It’s the difference between masturbation and making love. Quite likely the same outcome. But…that which is shared is just so much better. More memorable, more meaningful, more multidimensional.

We humans are social animals. And this pandemic is messing with that big time.

Once again, I can do this. But damn–I look forward to the day when we can once again just fall into one another’s arms. It’s going to be a hug for the ages.

xo

Living and loving an imperfect life

As I zipped through my social media this morning, I noted that two friends were posting that they were either NED or cancer free.

Good for them I thought. And then I, little miss Never Been Ned, reflected yet again on what it’s like to live not without, but rather with cancer.

It’s ok. Sort of like living through a pandemic.

Once upon a time I wished fervently that bad things wouldn’t happen. But they did. Again and again.

Truthfully we’d all prefer to simply coast but if we can figure out a way to ride into a stiff wind, well, we’re golden.

At least that’s what I tell myself. It’s the same attitude that has me taking the stairs versus an escalator or elevator. Both will get me to the same destination but one has the added benefit of a workout.

Rather than avoiding challenges, I seek them. That is because I am truly invested in becoming better, tougher, stronger, smarter.

COVID-19 is testing us all. This is not the world we once knew. It’s difficult to embrace a concept like social isolation, but also necessary. Not just for our own sake, but for the greater good.

My heart grieves for those who have been taken by COVID or lost a loved one. There is no way to spin this into a positive for some.

But for those of us who are primarily inconvenienced–well–there is the opportunity for a lot of reflection and personal growth here. We can demonstrate that we care about others simply by wearing a mask in public. And by shifting our focus to the small (and yet grand) things.

Like waking up in the morning.

xo

Ride or die. Or maybe both.

So Sturgis, South Dakota is going right on ahead with its annual motorcycle rally, Coronavirus be damned. The expectation is that approximately 250,000 people will be descending on this town of 7000. Masks are encouraged but not mandatory and social distancing, well, that won’t be possible.

Crazy and crazy making.

I first heard of the Sturgis rally thirty six years ago. I had a (regrettable) job working in the inspection department of a video and motion picture postproduction facility.

My first two kids wouldn’t be here had I not taken that job as I met their father there. I also wonder if I might not have cancer.

There were three of us in the inspection department. Me, Marie and some cowgirl whose name I no longer recall. What I do remember is that she dyed her hair red, reeked of cigarettes, and sported long, acrylic nails. She was also a biker–rode a big three wheeler–and I heard an earful about Sturgis.

But back to her nails. Part of our job was to clean the film before it was shipped and this was accomplished by bathing it in vats of trichloroethylene. Although the solvent came to the facility in big barrels festooned with a skull and crossbones, it had not yet been declared a carcinogen.

Marie was the senior member of our crew and my friend the cowgirl was not about to risk her nails by sticking her hands in the trichloroethylene. So what about gloves? Well, we didn’t wear those. Or masks. And there was no proper ventilation system.

So that left me, Linnea. I still recall the way my arms would feel after being immersed in the bath. That, and something called a degreaser’s flush.

I might have worked there longer but I became pregnant with my first child. And even if I was not as concerned with my own health as I should have been, I was terrified per the possibility of birth defects and did everything I could to find out information. That wasn’t easy, as the internet was not yet available.

There’s much more to this story, but fortunately my time in the inspection department was relatively brief. However I’ll never be a fan of Sturgis, acrylic nails, or selfish people.

And just remember, those 250,000 people are all from somewhere. And whatever they catch in Sturgis, they’ll be bringing back home with them.

Managing

Manageable. Another word j’adore because it doesn’t over promise.

To say that something is manageable doesn’t presume that there is no challenge, but clearly states that something can be accomplished without great difficulty.

My side effects of treatment are currently highly manageable. Flipping unbelievable given the fact that not so long ago I was ready to call it quits.

Instructional, this. One of the inherent difficulties of cancer is that the cure (aspirational) is often worse than the disease. And to think that I might have stopped a treatment that is essentially keeping me stable due to mucositis and over the top depression–both of which are currently manageable.

Damn. It’s spooky, particularly given the fact that I am now two years into progression, and that two years was the ball park survival stat we initially arrived at.

Too much of successfully addressing cancer is right place, right time. Had I not gone in for a COVID-19 test and encountered a nurse who had worked with head and neck cancers, I likely would not have discovered the product that is keeping my mucous membranes almost sore free (2-amino-4-carbamoylbutanoic acid disaccharide complex). And had I not been so emphatic per my degree of depression, an additional (and highly effective) anti-depressant would not have been added to my regimen.

So yes, chance. But also–and this is the part we do have control over–relentless self advocacy.

It still sucks to be going through a pandemic while also battling a terminal illness. But it sucks way less than it did a couple of months ago, when I was ready to throw in the towel.

I am back to that magical place where I say to myself “I can do this”. And that, my friends, is the essence of hope.

Simply doable.

xo

Just can’t stay away

Pretending to sleep selfie 🙂

So today I had the opportunity to visit the Termeer Center in its current incarnation.

My throat hurts so much I got in touch with Dr. Lin yesterday. Although it is almost certainly related to the mucositis, it is odd that I am still in so much discomfort even having skipped my last infusion. The expectation is that by now the mouth sores would have cleared up.

Not. And given that a sore throat can also be related to COVID-19, Dr. Lin thought it might make sense to come in for labs, hydration and a swab.

What a process. I was instructed to make a placard for my car and to park in some designated spaces in a garage that is separate from the Yawkey building. Upon my arrival I called the front desk of the Termeer and two nurses came down to get me. We did not go to the main lobby but rather took a side entrance. Another nurse handed me a surgical mask and hand sanitizer.

When we got to the seventh floor we first stopped in 7B for my bracelet. All the comfy chairs in the waiting room have been replaced with folding chairs that are socially distanced and numbered and there is a big plexiglass facade surrounding the desk.

The Termeer Center had undergone a similar makeover, with plexiglass barriers around the front desk and nurse’s station. Aside from that, the individual rooms looked familiar. However, anyone who entered mine put on a protective gown and face shield first.

After one failed attempt at inserting an IV, the vein whisperer was called in–he once placed IV’s in infants and he nailed my puny vien on the first try. Some waiting around and then a nurse practitioner examined my throat, confirming that I yet had active mucositis. Nonetheless I got tested for COVID-19. Two long swabs, one for each nostril. It was over quickly and not nearly as uncomfortable as some have made it out to be. I should have results by tomorrow morning.

Upon leaving, I was given a barcoded card for FREE parking. Who knew there was such a thing.

Hydrated, I came home to strip off my hospital tainted clothes, shower and a nap. And then I ordered some Aloe Vera Juice and an amino acid supplement called Healios–both suggestions from today’s team.

My expectation is that my COVID results shall be negative–my hope is that I am going to get some relief soon. So very glad that I did not have an infusion last Thursday and that there will not be one this week either–I need some time to heal. And think.

xo

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