Monthly Archives: July 2020

For shame

So here we are, in the midst of both a pandemic and (long time coming) ongoing racial tension. And our commander in chief tweets this shit out today:

It boggles the mind.

I would love to financially solvent, and healthy too. Not such a burden on society.

Ironic, as I work hard at both (trying to stay healthy and afloat). But, fate has dealt me other cards. I’m super happy to still be in the game.

And–importantly–not the least bit ashamed. Sure, I made some choices that have impacted my ability to amass income. I spent most of my twenties as a single mother, waitressing in smoke filled restaurants. This afforded me as much waking time as possible with my children but the second hand smoke may well have contributed to the fact that I have lung cancer.

As I barely made enough money to get by, I am intimately acquainted with the waiting rooms in welfare offices. Hard chairs, no magazines, a lot of lost and beaten looking people. I was one of them.

While married, I enjoyed a brief period of affluence. It was lovely to not be stressed about money, but not lovely enough to keep me in a relationship that wasn’t working.

My alimony ended in December so I am currently without a regular income. That means I qualify for MASSHealth (thank god), and for the first time in years, I did not max out my deductible in January.

However, my debt is, well, astounding. Ten years of clinical trial participation and I am alive but poorer–far poorer–for it.

As an optimist, I imagine that this is a temporary situation. I will make some art and write my book and, if I keep pushing hard enough, perhaps I can convince industry that clinical trial ‘volunteers’ who are not healthy are every bit as deserving of compensation as those who are.

There is no romance to disease or poverty either one. But there should also be no shame.

And as for that Suburban Lifestyle Dream? Shite. What a bloody nightmare.


My friend Ann sent me a message this morning: ‘In music there is a term “tempo rubato’ which in the 20th century is often translated as robbed or stolen time. You are a “time robber” in the best sense of the words.’

I responded with ‘I live that’, which was a typo as live was meant to be love. However love and live are separated by an o and an i. Two little vowels. Not such a world of difference.

I also enjoy the fact that Alice (Dr. Alice Shaw, my goddess/oncologist) is so very close to alive. As the c and the v hang out next to each other on the keyboard, I often transpose one for the other.

And I must say, it makes perfect sense to me.



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.


An opportunity to learn something

I homeschooled each of my kids for a year. Well, except for August, who was expelled halfway through (family joke but also true).

My version of homeschooling was closer to unschooling. I had a blast and for the most part so did my kids. And, best of all, it did not put them at a disadvantage academically.

Were my kids yet young, there is no way in hell they’d be returning to a classroom this fall.

I understand this is complicated. Parents need to work and teachers don’t want to be out of a job either. However, bottom line, I just don’t feel it’s safe.

There is a potential solution. Education has never been equal or even adequate for many. Had I felt that it was, I would not have homeschooled nor would I have sent my youngest to an exceptional boarding school.

What if time and energy went into developing a universal curriculum? And then identifying those who are going to need additional support (whether it is supervision/childcare or access to technology). Teachers would keep their jobs but the way in which they engage with their pupils would necessarily change.

It would be an experiment of sort but just as medicine is having to adapt to the pandemic, I believe education can as well. My own experience would suggest that worst case scenario, less harm is going to be done (educationally speaking) than one might imagine.

In fact, there is the opportunity to better identify and address disparities, while also keeping our children safe. And it likely would not be that difficult to assemble a group of volunteers to work with teachers to meet children’s needs.

There is the very real possibility of reinventing education—not a bad thing. A school itself is secondary in this equation. The focus should be on best (safe) practices and finding ways to keep children interested and engaged. This is a brave new world and helping our youth adjust to this stark reality might just be the best lesson of all.

Making peace with simple sweetness

I am an ADD addled procrastinator. Self diagnosed (the first part) because they didn’t throw that stuff around when I was a kid. However, I found my first two ‘report cards’ from preschool the other day, and they both mention what a difficult time I had paying attention.

Redemption. Of a sort. The problem is documented but it’s still a problem. Self directed activities are an ongoing challenge for me and yet, in a way, the only environment in which I can achieve.

I had to be an artist. Truly–I have always been convinced that I was not fit for most other avocations. But I still have to drag my ass to the studio most days.

Why? What for? And when does it end?

Never, me thinks. This die is cast. The best I can hope for is to either come up with strategies or to ride roughshod over myself. Usually I settle on a mix of the two.

And then there are days like this one. I slept ten plus hours but still woke up tired. I had a two hour nap this morning and then, after lunch, the storms rolled in. Kumo jumped in my lap (he loathes the thunder) and I thought perhaps another lie down was called for.

I am not one of those dog owners who sleeps with their pet and my dog respects this preference. However, Kumo knows that if there is a lightning storm I shall bend the rules. I turned on the fan and the two of us crawled in bed, me spooning the little white dog with the wildly beating heart.

Nothing tangible was accomplished but I reveled in the moment. This too—the in between—is living.


Oh joy

Kumo and I took a drive into Boston today for a masked meet-up with two out of my three kids. We traipsed around Cambridge looking for a restaurant that was open for takeout and made it to a splendid BBQ place just as a downpour began. Fortunately they had a tented area for outdoor seating, were dog friendly, and we had the patio to ourselves.

Lunch was fantastic (pulled pork sanny with smashed potato salad and Angels & Cowboys Rose—yum!) and the company, top of the line.

Damn I’ve missed my family. Seeing each other entails some risk (the table wasn’t six feet across) but in this ongoing pandemic, we have to make some calculated calls. And spending time with my kids is something I am willing to go out on a limb for.

Until next time!


How we spend

Time is both my most precious commodity and a limited resource.

I value every moment, and whenever possible, I tend to spend it wisely.

Except yesterday. The best thing I did yesterday was to make my evening meal the day before.

Yup. I wasted the whole bloody day. Front to end, top to bottom. Watched some Netflix, napped, had an edible for lunch and then another nap followed by more Netflix.

I also walked the dog three times, took out the trash, showered, and did one load of laundry. But that was the sum total of my accomplishments.

Dinner was washed down with a beer followed by two cold drinks (watermelon, ice cubes and vodka in the blender–heavy on the melon, light on the alcohol). In bed by 8 pm.

When I got up this morning I saw the text message my son August had sent at 9 pm. ‘How’s the writing going?’. Well, not. I was busy sleeping off my own little version of a stay-cay.

There is something perversely satisfying about spending what you do not actually have. Just ask my credit card 😉 Seriously though—the idea that I had as much time to waste as the next person and therefore could be totally unproductive for an entire day even without the excuse of feeling poorly. I kinda loved it.

But that was yesterday. Today I am determined to make up for at least some of the slack I created yesterday.

Starting with this blog.


Coping mechanisms

Somehow, someway. Kind of my go to motto these days. Slowly but surely I am figuring this shit out.

With the mouth sores under control (hallelujah), depression remained my biggest problem. I had a virtual meeting with a psychiatrist and we discussed the possibility of trauma therapy. I have yet to receive a referral (it was a year wait for the trauma therapists at MGH), but in the meantime she added an antidepressant to the prozac I take daily. It’s called mirtazapine and I am on 15 mg in addition to 40 mg of the fluoxetine. It seems to be working, as my mood and energy level are both elevated.

Stable cancer, manageable mucositis and mood. A week from tomorrow I am scheduled for yet another infusion of DS-1062a.

Yesterday morning I began my book FOR REAL. I am nudging myself into a schedule—art studio in the a.m. (while it’s still cool) and writing the rest of the day, with some walking, exercise, and meal preparation in the mix.

There is a freight elevator in the old mill where my studio is located, but I choose instead to walk up the four flights of stairs daily. I am working on becoming stronger, and those steps are an opportunity.

I am also starting to be out and about more–even going to some thrift stores. Of course I wear my mask and am careful about hand cleaning, but I refuse to remain a hermit for the next year or two. I need to be social, if only in a limited fashion. In fact, this weekend I shall be meeting two of my kids in the Boston Common for dinner—the first time we’ve been together in months. It took some convincing on my part (that it was ok) but again, one has to weigh the benefits against the risk.

Two months ago I didn’t think I’d be feeling as hopeful as I am right now–I came awfully close to saying uncle. The trick was finding the correct antidote to the side effects of treatment. A workable balance between the quality and the quantity.

On Purpose

I realized a few days ago that for the bulk of my life, I have lacked solid goals, either going along with what someone else wanted or making do with the cards I was dealt.

As choice has often not been part of the equation, this has been a reasonable response. However, a week ago I suddenly had a vision of what I want.

Land. A piece of land—maybe up north in Maine. Enough acreage so that I could give each of my three children a parcel. Sort of a mini farm. With goats and chickens. Well water, gardens, a clothesline. A studio that we all could share. Our own little compound.

I texted the kids with an outline of my fantasy and gratefully, they each wrote back immediately to say that they loved it.

Of course this is a wild assed plan, given my current financial state.

However, that could change. If my health holds, I intend to get into the regular practice of art again. And I will write my book.

Whether or not any of this comes true I already feel a stir of excitement. It’s as if I have finally located my true north.

A purpose that is strictly personal.

What pleasure.


Up and up

Big day yesterday with labs, eye exam and scans. And the good news is, stability abounds.

However, my mouth sores are back albeit in a milder version of themselves. However, the fact that they are there at all means that we will be pushing back infusion by two weeks again.

Woohoo! I feel like I just won a trip to Tahiti! Well, almost. How to celebrate? Go back to bed? Stay up and get shit done? Have an early morning cocktail?

All equally appealing but I’m gonna go with door number two. The day is long and there is always time yet for one and three. In fact, almost guaranteed that I shall pay them a visit.

Living large in the time of pandemic.