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.

xo

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!

xo

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.

xo

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.

xo

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.

xoxoxo

Living with lung cancer:

For those who were unable to register for the event, here is the video from ICRF–LIVING WITH LUNG CANCER: A LOOK AT PROMISING CANCER THERAPIES.

Enjoy!

xo

Upright citizen

I was interviewed for a story about COVID-19 and cancer some weeks ago and it has been picked up by PEOPLE.com. Give it a quick read.

Better yet, one of my life long dreams came true in November—I was made the member of a board and not just any board, but rather the Israel Cancer Research Fund. It has been both an honor and a pleasure, as I get to work closely with a fabulous team as well as one of my favorite people on earth, Rob Densen.

Last week I had an opportunity to be interviewed by Rob for the ICRF ongoing webinar series, Brilliant Minds. It’s not too late should you like to register to hear this presentation which will be aired tomorrow, 6/24:

https://www.icrf.ca/icrf-presents-brilliant-minds-a-monthly-webinar-series/

It’s going to be a busy day, as I am presenting as part of Thermo Fisher’s Innovation Day in the morning, and then will be part of a forum for clinical trial advocates with Pfizer later in the day. And in between the two activities I shall squeeze in a zoom appointment with a psychiatrist. Just keeping it real, y’all.

Hopefully I’ll have time in the evening to get to the studio, as I purchased two hollow core doors to make tables with. When I work I like to work large (lots of projects at once) and I’m itching to get to it.

So, cancer, depression and pandemic be damned, I am finding a way to keep moving—forward.

I believe I shared that when I was first diagnosed I decided that no one had died from lung cancer while upright (technically not true, but it’s an aspirational image). And I intend to be an upright citizen for as long as possible.

xo

Down and up date

My mood is a wobble.

The good news–thanks to a miracle product suggested by a nurse who works with head and neck cancers, my mucositis is finally under control. Yet there, but a tiny little brush fire. I ordered this stuff from Amazon and it’s not cheap but it is worth every penny.

I have scans again next Tuesday—because of the time off treatment they came up fast. Infusion is scheduled again two days later but I am hoping that Jess and Alice will read my scans first and we can discuss.

My ongoing issue is depression. Given that I had an infusion reaction right out of the gate, I am wondering if this could be related to cytokine release–which my smart friend Janet suggested as a possibility. I have been dealing with GI symptoms–both diarrhea and vomiting, as well as occasional chills; all of which could be attributed to cytokines. Those are manageable side effects, but being sad is not.

I continue to prepare meals, walk my dog, go to the studio. And–with social distancing observed–I am gradually becoming more social. On Saturday my friend Jim picked me up and we drove up the coast–with masks on and windows open–stopping at a restaurant on the marsh just south of Portsmouth for fried clams and a lobster roll. It was so much fun. I’ve had three other picnics in the past two weeks now; that and hiking seem to be the best sort of outing for the moment. My friends have all been super respectful when it comes to wearing masks, for which I am most grateful.

So that’s the scoop (one daily, mixed in water, for the Healios).

xo

In every crisis there is opportunity

Without a doubt part of what gets me through is a solid belief that nothing is wasted. Even the shittiest of circumstances can be the basis for good compost and thence a thriving garden.

After a four week break I had yet another infusion last Wednesday. Happily, it took a week for the mucositis to rear its ugly head and thus far it is manageable.

The day after infusion I felt a distinct lack of motivation. However it would take another several days for depression to kick in.

To return to the metaphor of agriculture, this is no garden variety depression. Rather, it is something I can only describe as despair.

So very unfamiliar to me, who has cycled quickly in and out of depression my entire life. This is something different–something heavy that sits upon the center of my chest and refuses to budge. Without raising red flags (I’ve got this) it is the sort of boundless sadness that includes suicidal ideation.

Yes, that bad. And yet—I understand implicitly that this is chemical. Previously I wondered how much had to do with being uncomfortable–the mouth sores–but this time it is clearly independent.

For whatever reason this drug fucks with my head–big time. It is difficult to collaborate when you are the only person reporting such a side effect and unlike lorlatinib, this is not a small molecule designed to cross the blood brain barrier.

No matter. My empirical evidence rests on my own account–the very reason humans are used in phase I trials. Although this molecule may be having some modest benefit against my cancer, the cost to my psyche is untenable.

Surviving is a tricky business. The first requirement is consent–another way of saying a strong desire to live. This drug diminishes that instinct in me–to a notable degree. Had I not so much self control and the ability to step back and be unemotional, I would say to a dangerous degree.

As someone who has (and continues to) dally with recreational drugs I understand that this is chemical and therefore not without end. When I take an edible (THC) and get too high, I know that within perhaps a five hour window, I will come back down. This is going to take longer—possibly weeks. However, I am reassured that although it is me feeling this way (despair) it is not without provocation. There is a light at the end of the tunnel–my will to survive and its attendant joie de vivre will return. I just have to hang on.

I have the ability to remove myself from certain situations–not take it so personally. This sucks but it is also the fodder for great learning. As a cup half full individual I don’t believe I have ever fully appreciated the challenges of mental illness and depression. I now understand that mental health is even more fundamental than physical health. I am currently not suffering physically but my mental state is precarious. That is instructional and humbling both.

In two weeks I will have to decide if it is worth having yet another infusion. Today I would say no. Adamantly. As important as my lungs are, it is my brain and my mental state that actually commands this ship. And these high seas are not to my liking.