Category Archives: Uncategorized

Success confirmed

Although I don’t have actual RECIST measurements back from the trial radiologist, I do have the assessment of my two oncologists. A “Wow, they do look great!” and a “‘Flipping amazing’ just about sums it up.” And then there was my friend Dr. Jack West’s comments from twitter, which I don’t imagine he would object to my sharing:

Yesterday was all about personal celebration, but today I thought about the greater impact. When I entered this trial, I was advised that the best response had been stability. Although that wasn’t going to be good enough, it was what I was going for. Today I confirmed with Dr. Lin that my scans likely represent between a 50% and 70% response. Which is a heck of a departure from stability. I also confirmed that up until yesterday, stability was still the best overall response.

Today I imagined researchers, other cancer patients, and even pharma execs doing the happy dance. This is so much more than a personal victory–a response of this magnitude represents capital H Hope.

So yeah, this a BFD. And I couldn’t be more pleased.

xo

WOOHOO WOOHOO FUCKING WOOHOO

Alright. So I fantasized that my fever last week was burning out the cancer. I imagined it like toasting marshmallows, with that bad part of my lung just crisping away to ash.

WELL, ladies and gentleman, boys and girls, have I got some news for you. I had a scan this morning and it shows fucking reduction! Never, ever, did I expect to see this kind of positive response at this particular juncture. As I read it (the first time!) I even thought for a moment that perhaps it was a mistake–someone else’s radiology report. But no, that’s my cancer they are describing and it is GETTING SMALLER!

Hugs all around!

xo

Two things

One, there are so many ways to be beautiful.

Two, I love almost everyone.

A hole in my armor

Although I tested negative for COVID, I think I have the flu. It’s been more than a week since I first started feeling crummy. Yesterday my fever was only low grade and by evening I felt well enough to cook myself some roasted potatoes and a salmon filet, which I washed down with a glass of wine.

I woke up feeling poorly again and although I am currently fever free, I’ve had multiple bouts of both diarrhea and vomiting throughout the day. My nurse Lisa advised getting in touch with the on call Doctor at the cancer center and so I did. A prescription for Zofran is helping immensely, and my dinner was lentil soup and gatorade.

So. This is the second time I’ve likely contracted the flu even though I received the vaccine. And I’ve been basically home or studio bound, and super cautious when I do venture out.

The moral here is that we can get ill even when we take precautions. Sometimes seriously ill.

Fortunately I am nowhere near as sick as the time I came down with Influenza A in January of 2011 and was subsequently hospitalized.. However, my current illness suggests that even once the vaccine for COVID becomes widely available, we will need to remain vigilant.

Strange times, these. Trying times.

And we can’t let down our defenses.

Sami

My friend Kique sent me this wonderful alpaca hat from Peru. Kique is Peruvian and we met when I spent two weeks in Lima with A Fresh Chapter.

This hat is wonderful. As is my friend Kique. My hair is growing back very slowly, and this splendid chapeau keeps my little head warm.

I apologize for my outfit in the photo–due to illness, this has been pajama week. Generally I wear clothes in public which in 2020, means sweat pants and hoodie. So I have temporarily downgraded.

Anyway I took the photo to send to Kique but then I realized how well this hat highlights my Sami lineage. The Sami are the indigenous people of Sweden, Finland, Russia and Norway. And through the strange workings of genealogy, I appear straight up Sami.

In reality, I am only 1/2 Swedish. But I would argue 100% Sami.

Image

COVID results are in

What’s missing here

The patient. I’ve been coming to the Yawkey center for almost sixteen years now and in the past, this room was elbow to elbow with cancer patients and their caretakers.

As I am enrolled in a clinical trial, not a whole lot has changed as far as my routine. Sure, some of my blood draws are in Danvers now but I’m still logging a lot of hours at the main campus. And, it’s a ghost town.

In the bigger picture, what does this mean? Are all the missing patients meeting remotely with their oncologists? Or are they just coming in for less frequent visits?

One thing that hasn’t changed is the rate at which people develop cancer. No, COVID hasn’t made cancer go away. So the question is, are these missing patients ok? Are they receiving adequate care? And what do their providers think? Are they able to maintain that patient/physician relationship that is so integral to healthcare?

These are all important questions, as we find ourselves forced into doing things in a completely different fashion. It will be necessary to parse what works from what doesn’t, as I feel fairly certain that we will never return to the old paradigms. The future shall be a hybrid, and hopefully we are paying careful attention now so that we adapt what is useful but also scuttle what is not.

There is opportunity in this crisis; an opportunity to improve an outdated healthcare system.

Crummy

That sort of sick where you just don’t want to make any movement. Because then you’ll feel the covers on your skin.

Whatever clobbered me on Christmas Eve is clobbering me still. Slowly worse day by day until yesterday, when I just felt like I couldn’t keep my eyes open. And that my legs were encased in cement. I took my temperature and it was 100.5.

My nurse Ally called me and we decided we’d see how I was doing today. Worse, not better. Diarrhea and a persistent low grade fever.

We decided there was no way around a COVID test so I drove to Boston. The nasal swab and a urinalysis. When I got home there were eight bags of groceries outside my back door (thank you Melinda). Despite Tylenol my temperature continued to rise–up to 101.3 this evening.

Fortunately I have no respiratory symptoms. Last night, in that funny head space that a fever brings on, I was imagining that whatever this illness is, it was a cure for cancer. That’s what you call looking on the bright side :).

Hopefully I will get the results of the COVID test back tomorrow. In the meantime, I’m curled up on the couch with my weighted blanket and a heating pad.

xo

Holidays are like hamsters

A lot of work and no shortage of mess and then they die. Fucking heartbreakers.

Once upon a time holidays meant much to me. Too much. I had high expectations for what were ultimately low returns (child of a woman who put little effort into gifts marries man who does same). There are plenty of good (bad) stories but perhaps the ultimate is the year I was handed a small jewelry case–the sort that would house a ring. When I opened it there was a gray cube made of plastic clay inside, crafted by our son Peter. ‘Surprise! You know that dishwasher we need?’ I wish I could say it was a joke.

Anyway, I’ve spent the last seven years in recovery, cold turkey-ing as it were from Holidays. This year took the cake though (wait, it’s coming). For my birthday, one of my kids and I synced up the Wizard of Oz from our respective abodes. And then we both got high, well, just because. It was…different, but A for effort.

My middle child turned 35 on the 21st, so I wrapped up some gifts and baked a cake (I still go through the motions), which I drove to Cambridge so that my youngest could take it all with him to Toledo. Well wouldn’t you know it, the first night Lily, the birthday boy’s dog, decided the cake was for her. Another A for effort.

Christmas. Oh Christmas. On the eve my friend Bill stopped by and we sat six feet apart on hard chairs in the kitchen and drank whiskey neat. It was festive and we broke the rules when we hugged goodbye.

Unfortunately that night I got up to vomit (side effect of my current drug regimen) and then started the day with diarrhea. I tried eating some figgy bread for breakfast but my body immediately admonished me for not paying attention.

So that was it until evening. Toasted semolina and bone broth for dinner and I also made some deviled eggs, inspired by a photo of her own beauties that my daughter posted on Facebook. And then I texted my sons for a suggestion as to a good movie to watch and ended up viewing Deadpool. On Christmas.

2020, you have disappointed me. Again, too much effort for too little return. Four more days, and we’re outta here.

I think I’ll drink fresh squeezed juice and find some baby lambs to pet on the first day of next year. Fresh start, y’all.

xo

A short journey

Two mornings ago I went on a brief adventure.

I am working on a number of tableaux in the studio and I located an antique bed on craigslist that was perfect in price and aspect. It also was also down in Duxbury, which turned out to be further than I thought. However, it was a scenic drive on a very gray day. I saw some lovely things–a quilted sky; clouds looking like cotton batten. A partially frozen marsh the color and consistency of lemon pudding. River water, semi opaque and sluggish, like mercury.

When I finally arrived at my destination it turned out to be a little cabinet of wonders. The seller of the bed was a professional picker (that may or may not be the right term in this context): when people go arrears on their storage units, he makes a bid or offer for the entire contents. Fascinating.

His shop was as tidy as could be, loaded with bins and shelving. I asked him what the best thing he’d ever found was and that was the magic question. Soon I was getting a tour of remarkable treasures, including a nautical trunk with intricately braided and waxed cotton handles. A museum piece (but it was going to his wife for Christmas), it was constructed of camphor wood, and when he opened it a smell like no other wafted out. Two hundred year old wood, yet magnificently fragrant.

He also showed me a steamer trunk from the 1930’s, filled with clothes from the same era. And when I commented on some striking glassware (pink goblets with stems made of green vaseline glass) he asked if I wanted them. And then my new friend retrieved a bag and some tissue paper and said ‘go ahead, wrap them up and take them.’ He threw in some multicolored cordial glasses which I shall pass on to my daughter.

Before I left, he summoned me to his desk. He handed me a tiny glass jar full of coffee beans, with a handwritten note inside from the late 1800’s indicating that this was the first coffee from their new home, they being the family of the person who wrote the note.

It was such a pleasant and surprising diversion—like stepping into the back room of a museum, one where they send you home with antique beds and pink and green glassware.

xo