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There is opportunity in this crisis; an opportunity to improve an outdated healthcare system.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

Henrietta Lacks and her legacy

The Senate has passed a Henrietta Lacks Bill.

Henrietta Lack’s story is a cautionary tale and this bill is an attempt to right an eternal wrong (the cell line derived from Henrietta’s tumor is immortal).

However, I can’t help but feel that this is not only too little too late, it is disingenuous as well. Take line seven and eight from the bill:

(8) For more than 20 years, the advances made possible by Henrietta Lacks’ cells were without her or her family’s consent, and the revenues they generated were not known to or shared with her family.

(9) Henrietta Lacks and her family’s experience is fundamental to modern and future bioethics policies and informed consent laws that benefit patients nationwide by building patient trust; promoting ethical research that benefits all individuals, including traditionally underrepresented populations; and protecting research participants.

So what has changed in the 70 years since tissue was taken from the tumor of Henrietta Lack’s without her knowledge? This. Now we must give informed consent. However, how informed is that consent? As I quoted an article from ASCO in a previous post:  ‘Informed consent forms may not adequately describe the risks and the nonbeneficial nature of research biopsies in language that facilitates comprehension.

There have been efforts to make reparations to the Lacks family–in October a six figure donation was made to The Henrietta Lacks Foundation by the Howard Hughes Medical Institute. But I can assure you that those of us participating in medical research now do not share in any of the profit and to suggest otherwise is erroneous. Should we be injured as a result of a clinical trial, there are no reparations–our insurance will be billed. If we are lucky, then some of our additional expenses are repaid. In my own case, I have yet to be compensated for anything. Certainly not co-pays. Not even my parking.

I am not in the position, as a white woman, to even begin to address the part of Henrietta’s story that has to do with race. All I can do is to acknowledge it. Henrietta’s story, like the Tuskegee Syphilis Study, took place such a very short time ago. And faith takes a very long time to rebuild. The Henrietta Lacks Bill will oversee a study into barriers to participation in medical research. Some of those barriers–mistrust and misunderstanding, are both understandable and difficult to address. However, transparency is an excellent place to start.

This is where I am qualified to comment. As someone who has now spent more than a decade in clinical trials, I have had to learn as I have gone along. The difference between a research biopsy and a clinical biopsy? I figured that out a very short time ago, and only because I asked a specific question regarding return of results.

So. It’s good that medical research is having such a moment. But let’s not pretend that something like informed consent is all about the patient. No, it is essentially legal jargon, designed to protect the physician from litigation. The tip off? That word consent, which connotes permission. Because how can you say yes with certainty when you don’t truly understand what it is that you are agreeing to?

This one’s going to be different.

Christmas, that is. The plan was that I was to take a road trip to Toledo again with Peter and Kumo. August turns 35 on the 21st so we would celebrate his birthday and then Christmas. However, my medical team was pretty adamant about this being a bad idea.

I spent yesterday making a carrot cake for the birthday boy and wrapping presents/putting together stockings. Then I loaded it all into my sleigh along with Kumo, who is going to Toledo without me so that Peter has company and Kumo has an adventure. Dog, cake and presents were all deposited in Cambridge and the boys hit the road this morning. This is the first of what I hope are lots of images documenting their visit:

I am disappointed that I can only partake in the celebration from afar but also happy that my boys will be together. We shall zoom and make the best of it.

Strange times, these.

Today I shall tidy (see below–a little mishap during the frosting phase). Tomorrow and much of the rest of the week shall be devoted to art. I might be a bit lonely but also safe. Which is better than sorry. But I am sorry. And sad. This is not how we are supposed to spend the holidays.

xo

Where is the outrage

I did a zoom presentation earlier this week for a big pharma company. Everyone I dealt with was delightful but after all was said and done, I wondered if perhaps they had extended an invitation to the wrong advocate.

That would be because it is no longer possible for me to remove my other hat, that of an activist.

Directly before my presentation a visual was shared that represented the conformed consent process and research biopsies. Subsequently I was asked how I advocate for myself.

I shared the story about my two most recent research biopsies, and how, after more than ten years in clinical trials, I had only just come to understand the difference between a research and a clinical biopsy. And that once I did understand, I was incensed. How at my last biopsy, I sat there in my johhnie on the operating table just prior to the procedure and essentially schooled the surgeon. Explained how I felt about a biopsy that was required of me in order to participate in a trial, but that would in no way benefit me. I used the word bullshit. And then I encouraged the surgeon to try to access some extra tissue, tissue that wouldn’t travel to a lab in Japan but would instead be reviewed at MGH in relation to my case.

For ASCO’s view on biopsies, have a read. But pay particular attention to these two paragraphs:

Another concern about participant risk centers on the informed consent process and whether potential participants are told of both the risks of biopsies and their lack of clinical benefit. Although many patients are willing to undergo research biopsies, they tend to underestimate the risks or express a willingness to assume a higher level of risk than clinicians and IRBs believe permissible. This could be seen as a willingness of competent adults to accept high levels of risk but could also reflect a lack of understanding of the risks in comparison with medical experts. In addition, participants may not understand the nonclinical nature of research biopsies or demonstrate a therapeutic misconception, where they mistakenly believe the biopsy will impart clinical benefit. Informed consent forms may not adequately describe the risks and the nonbeneficial nature of research biopsies in language that facilitates comprehension.

Additional concerns arise when research biopsies are a condition of trial enrollment and may impose a limitation on patient autonomy. This is particularly true for patients with refractory malignancies, who may feel they have no choice other than enrollment in a trial of an investigational agent. Ethical concerns regarding mandatory biopsies are reduced, however, if the trial is testing two standard-of-care treatments (eg, a comparative-effectiveness study with a translational component), because the treatment is available outside of the study. Finally, there are unanswered questions about participant burden related to research biopsies. Participation in trials imposes personal and financial burdens, such as lost time and travel-related expenses; research biopsies could be an added burden for some participants. For research biopsies to be ethically acceptable, these risks and burdens must be balanced by the potential benefits to society.

And yet the demand continues. I had two intrathoracic biopsies in my previous trial; refusing an optional third. Of course another biopsy was required for my current trial, but there was tissue remaining (possibly due to my request to the surgeon) from my previous biospy.

Anyway, let me try to frame this for you in such a way that it is a little bit more personal. What if you are at the drive thru at Starbucks and are charged for not just your coffee, but also for the order of the person in the car behind you. Not because you were feeling generous, ie: this was your own choice, but rather because it was mandated. ‘This overpayment will in no way benefit you, but will help the person in the car behind you” says the Starbucks employee. How does that make you feel?

Or, let’s say you are getting your hair cut and the stylist takes off an extra five inches. “Sorry,” they say. “This won’t benefit you in any way but it will go toward a wig for someone else.” When you ask who will profit from the sale of your hair, you are told it shall be the salon, not you. ‘But,” the stylist says, ‘Your hair shall help someone else.”

Maybe you are starting to get the idea. Only keep in mind that A. cancer patients are, by definition, a vulnerable population B. they enroll in trials not because they want to but rather because it represents an opportunity to stay alive (between a rock and a hard place) C. that most of them are generous people but giving away tissue samples is a bit of a stretch D. This is an invasive procedure, and not without personal risk.

And then there’s that–the risk. I have had numerous partial pneumothoraxes post biopsy, each requiring admission to the hospital. My insurance was billed for those hospital stays. I payed the copay. More generosity.

Plasma is one thing (I have had so much blood drawn over the past sixteen years) but tissue is another. To require me to literally donate a piece of myself simply for the sake of data that will ‘help others’ but not myself–well, it is an outrage. But until more people speak up, this outrage will continue.

Going for anything at all

I was exceedingly hopeful that the sound in my lungs had abated. It was almost comical when I realized that it was simply a matter of position–I had been sleeping on my right side and my right side only. Once I rolled over, there it was.

Did I say almost comical? In truth, my left lung offends me. Were it anatomically possible, I would simply reach down my throat and yank the corrupted lobe from its stem. And if you know me, really know me, you understand that I am not joking.

It is maddening to realize that the whole damn affair can be brought to a close by one errant organ. Why must it be an essential one? The appendix is underworked. Could it not spend some of its spare time learning how to breathe?

I will know more after my upcoming scans but I must say that I do not believe this combo is my panacea. If it were, I would not have to stop to catch my breath on every landing as I make my way up the 94 stairs to my studio. And if it were, my lung wouldn’t continue to crackle and hiss and moan.

Oh to draw air freely. To once again be strong and fit and able to believe that I wasn’t simply winding things down.

It could still happen. Part of me believes it will–that there is no other acceptable outcome. But another, rational part of me understands that I am like any other. And that tomorrow is–always has been–a maybe.

xo