Category Archives: Uncategorized

Rock, reel and roll.

up down up

Getting knocked on my keister is a personal proclivity. Not by choice but rather situational in nature.

I just can’t seem to arrive at a place where life is smooth sailing. In fact, I think I ought to stop believing that I will. It’s disappointing. Reclining in a lounge chair on a beach somewhere with a cold drink in hand (garnished with some fruit and a paper umbrella please) is a go-to fantasy of mine. As in, I sure would rather be there rather than stretched out in a CT scanner, as I will be tomorrow morning.

In all honesty, getting scanned is not such a big deal. Been there, done that, will do it again. And again.

That is something I can count on. It’s the surprises that catch me off guard. Which is surprising, because those too are predictable. At the moment I’m dealing with a major inconvenience that has nothing to do with cancer. Although that isn’t quite accurate, as having cancer often complicates even seemingly simple situations. Plan a trip three months from now? Sure. Maybe.

When the shit hits the fan my emotions generally assume a fetal position. The old duck and crawl–right under the covers. However, the fact that I both live alone and own a dog keeps me honest. Six hours max and I must rise to the occasion.

Which is really very helpful. Sometimes you just have to go through the motions, with an emphasis on moving. Actionable. That’s a beautiful word, connoting possibilities. And although it is not probable, it is possible that both some sand and a long tall cold one are close at hand.

xo

Ten four. Incoming: year fifteen

Well y’all, I may be limping across the finish but I made it. It’s now been fourteen full years since my world turned upside down. Fourteen years since I learned that in fact you could be forty-five years old, a never smoker, and still get lung cancer.

My general practitioner–the same one who misdiagnosed me with asthma–broke the news. It would be several years more before I would learn that my earlier doctor–who had been traveling to a birding convention on the morning of September 11 and was a passenger in one of the jets that hit the twin towers–had written this in my charts: ‘On the off chance that this young non-smoking woman has a lung neoplasm.’

By the time I received the diagnosis, my tumor was five centimeters in diameter. Fortunately, the brain MRI came back negative for metastases and the full body PET and bone scans also seemed to indicate that the cancer was contained to my lung.

One week later I met with my thoracic surgeon. I put on a pink sweater that morning, consciously trying to look young, healthy and worth saving. Another week would elapse prior to my surgery. I had wanted to pin a note to my johnnie reading ‘Out, out, damn spot’–a cheeky nod to Shakespeare, but I chickened out.

The surgeon had explained that the first thing he would do would be to remove a number of thoracic lymph nodes which would be biopsied immediately. If any of them came back positive for cancer, he would close me right back up.

When I awakened in the ICU, my first question was whether or not it had been a long surgery. All of the tubes running from my body should have made that obvious.

Once I was released to a room, Peter came to visit with his dad. He immediately crawled up in my bed and wrapped himself around my legs and just lay there whimpering. It broke my heart but also reinforced what I already understood–I absolutely had to stay alive.

In 2005 no one could have imagined that fourteen years later I would in fact still be here. Two weeks from today, we will celebrate Peter’s 22nd birthday.

It’s been an incredible journey and it’s not over yet. Here’s sincerrely hoping that a year from now, I’ll be posting a giant fifteen at the top of the page.

xo

Out LIVING. Loudly so.

Yes, I love that double entendre. And it is my intention to outLIVE as well.

But sometimes a girl just has to play. Therefore, my recent trip to Philadelphia started a few days prior to the conference. Four, to be exact.

My friend Rufiya picked me up at the airport on Thursday. We went straight to a farm to table restaurant followed by a trip to the Philadelphia Distillery (home of Bluecoat Gin) where the bartender regaled us (an effort I heartily supported) and then on to an evening with Michelle Wolf, the comedian who raised more than a few eyebrows at the 2018 White House Correspondent’s Dinner.

The next day Rufiya dropped me off at Princeton University and I perused their excellent art collection before spending a pleasurable hour in the amazing Labyrinth bookstore. After dinner Rufiya and I took a detour to Robbinsville New Jersey to visit a Hindu temple complex, the Swaminarayan Akshardham.

When you first drive up to this mammoth structure it looks almost as if you are at a high end mall or in Las Vegas (that’s from the parking lot). As you approach the entrance you begin to notice the intricate carvings in gorgeous Carrara marble. Once inside women and girls are ushered to the left, men and boys to the right. Shoes are removed and if a woman is dressed ‘immodestly’, a Sari is provided. The marble floor has radiant heat (cooled in the summer, we were told) which makes the entire experience more sensual.

It was our excellent fortune to arrive just before the ceremony where the gods are fed and we were graciously invited to participate. We were allowed to enter the heart of the temple where we took a seat on the floor facing the elaborately dressed gods. It is very traditional–with males in the front and females in the back. Chanting, incense, priests in orange robes. At the conclusion of the ceremony we were encouraged to join in another ritual, where you go to a special room, cleanse your hands and then are handed a shiny metal bowl filled with hot water. You take this bowl to a statue of a god, make a wish, and pour the water over the god. The entire experience was both highly spiritual and incredibly magical.

Rufiya, the consummate hostess, had something special planned for Saturday morning as well and we were up at the crack of dawn and headed north to the King Spa and Sauna in Palisades Park. Mind blown.

I will try to describe.

After entering you are handed a bracelet (for charging food and services) and your uniform. For women it was baggy pink shorts and a t-shirt, a washcloth and a little pink cotton cap. The spa is huge—IKEA sized with multiple levels. The dry section (hot saunas) is unisex and consists of various rooms, igloos from sort-of-hot to so-very-hot-you-need-to-wrap-yourself-in-a-tarp-hot before entering (the one room we passed on). You lie on the floor in the igloos on tatami mats with your neck supported by a wooden pillow. Each igloo is lined with various minerals and crystals or salt and has bags of herbs suspended from the beams. Aromatic, hot and fantastic!

Mixed in with the igloos are sleeping rooms with either tatami mats or recliners (the spa is open 24 hours a day)–and there are also spaces with laptops and televisions. Onsite manicure or pedicure is an option. And a restaurant with ornately carved chairs upholstered in pink leather. We started our day with ginger tea and brown eggs that had been cooked in the hottest igloo (!). Lunch was traditional Korean fare–phenomenal kimchee. After that we were ready for the wet room.

This is the moment that you leave your inhibitions behind. Although segregated by gender, everyone is nude. There are both hot and cold soaking pools, showers, and a steam sauna. The room is very noisy and lined with multiple tiled stations equipped with handheld sprayers. Each station has an overturned bucket and women sit on top of these to scrub and bathe. I’m not sure I’ve ever seen so much running water. Along the back wall is a row of tables covered in pink vinyl, and this is where the wet and dry massages take place.

Rufiya opted for a wet massage, which is basically an hour and a half long exfoliation. I, not quite so brave, went for the dry.

When it was my turn, a very short Korean woman dressed in black bra and panties came and took me by the hand and lead me to her table. Then she slathered my skin in oil, wrapped me in steaming hot towels, and applied a mask to my face made from freshly mashed cucumber. She spoke no English but sang softly in Korean as she worked. At one point she pounded (gently) her fists on my forehead; at another juncture she suddenly threw my arms off the table. After forty minutes she motioned for me to turn over onto my stomach. I opened my eyes to peer around and realized she had crawled on top of the table and was straddling my back (‘riding me like a horse’, is the way I described it to one friend ;). At the end of the massage she washed and conditioned my hair, sat me back up, slapped me on the back and said ‘You good.’ It was all so very odd and so wonderful as well.

But my friend Rufiya wasn’t finished with me yet. Nope. I did this. Billed innocuously as a mugwort bath, I had no idea what I was getting into. It was…really odd but, I guess, an experience. I’d advise passing on the mugwort and just getting more food in the restaurant. BTW, if you are interesting in giving King Spa and Sauna a try, check out Groupon for a steep discount.

I fell asleep in the car on the way home–turns out all that spa-ing is exhausting. But the next morning Rufiya dropped me off in Philadelphia in preparation for the conference and I hit both The Barnes Foundation and the Philadelphia Museum of Art. Four action packed days of plain old FUN.

Oh yeah

I think my kids likely know me better than anyone else. And last night my youngest sent me this message:

It’s such an accurate and succinct summary of who I am. Complacency equals complicity is one of my guiding principles. Speaking up and out is integral to everything I believe in.

But I also like to keep a low profile; not make a fuss until it’s really necessary. Confrontation isn’t something I enjoy, but at times it is unavoidable.

To this end I am fearless. Not that it was always so–first I had to get to a place where I no longer felt constrained by what other’s thought of me. Now that’s a super power–not giving a fuck. But (and this is a big but) only if it is combined with integrity and a lack of ego/personal agenda. I mean, you don’t want to be obnoxious or oblivious to the comfort of others. Or, at least, I don’t.

I also (ahem) don’t have much respect for authority. Never did. Ask my parents or all the school administrators that I was on a first name basis with. In fact, I don’t really recognize authority. Expertise and wisdom, yes. But rules? Again, I have no desire to make life tougher than it needs to be, for me or for you. But I shall always question the status quo. Anything that is a human construct will be taken only so seriously. I’m pretty certain why was my first first word. And then not. As in, why not?

Truth. Equity. Veracity. Courage. These are my go-to words now. And if that means trouble, well, I can deal.

On being heard

In the comments following the previous blog my sweet friend Nancy expressed concern that perhaps the conference I just attended had been a waste of my precious time.

Nancy is correct about one thing–my time is very precious.

As for the conference, I was a panelist. However, my panel was the very last on the schedule. Those of you who attend conferences know that by the final slot, 30-50% of the attendees have slipped out the door, as most of them have flights to catch.

Somebody has to go last and I suppose it may as well be me. And there were patients scattered throughout other presentations. However, most of those patients had scant experience in clinical trials. You wouldn’t ask a podiatrist to serve on a panel specifically about cardiology, so why the more lax approach toward patient experts?

Sadly, I think this is because our position at these conferences is yet relatively token; that we are not actually recognized as experts.

I agreed to attend this conference as I viewed it as an opportunity to listen and learn. And I made absolutely sure that my (our) voice was heard, as there were ample opportunities to comment or ask questions.

Generally my viewpoint was rather contentious. The first time I went to the mic it was because a presenter was describing clinical trial participants as ‘heroes.’ I let him know how distasteful I found that word. Patronizing. Over the top in a ‘let’s just put ten gold stars at the top of the page’ sort of way. Trite, cheap, inaccurate. A wink, if you will. Even if it is well intended.

I didn’t choose this path, it chose me. And calling me a hero isn’t the sort of recognition I want. Give me something solid, like supportive services.

Another time a panel was addressing the issue of enrolling underrepresented populations in clinical trials. This is all good, I said. But make darn sure (see above) that you understand that clinical trials are time consuming, often require travel, and are more costly. That it’s important to make certain participation is sustainable. I was stopped by a gentleman later who asked if it was true that only drug was paid for in a clinical trial. In my case, yes.

And of course I expressed my frustration with the whole more is better data thing. I view the emphasis on returning data to patients as a bit of a smoke screen. ‘I am a data cow’ I said–my outlandish number of scans evidence.

I am undoubtedly the square peg at these meetings—but then again, I have been places that most will never go and I feel it is vitally important to share this experience. Gratifyingly, a number of people took me aside to thank me for speaking up and out. It felt good to have my viewpoint acknowledged.

Tomorrow I will be participating in another meeting, this one with the FDA. I think it could be interesting 😉

LOVE

I feel it. Coming in from all sides. Cradling me, like a nest around an egg. Buoying me, like the waves beneath a boat. Holding me tight, like one big group hug.

There’s something flipping wonderful about having a personal motto that is ‘all people are my people’. I love me some people. By FAR my favorite animal, and that’s saying something, as the animal kingdom is rife with coolness.

The thing is, when you love other people, they tend to love you back. Magic, that. I mean, really, truly, some special sauce. And the best thing is, you can spread that shit around.

So here goes.

I LOVE YOU I LOVE YOU I LOVE YOU.

xo

No shit

Read this article from the NYT’s about the booming industry behind fecal transplants and weep.

“At the heart of the controversy is a question of classification: Are the fecal microbiota that cure C. diff a drug, or are they more akin to organs, tissues and blood products that are transferred from the healthy to treat the sick? The answer will determine how the Food and Drug Administration regulates the procedure, how much it costs and who gets to profit.”

Well, I could answer that question rather quickly. But as someone who has lost exclusive ownership of my own organs, tissue and blood products, I understand it’s a lot more complicated. What’s mine is not really mine.

“An obscene amount of money is being thrown around by companies trying to profit off of what nature made,” said Dr. Khoruts. “I don’t think there are clear villains here, but I worry that the regulators are not caught up on the latest science and that the interests of investors may be exceeding those of patients.”

Ok, I know I’m becoming rather shrill but tell me this is not a refrain.

Much like the fight over prescription drug prices, the “poop wars,” as one doctor described it, mirrors long-running tensions in American health care between pharmaceutical companies and patients.”

Yes yes yes yes yes yes yes.

What if the pharmaceutical industry had a different model? Charging as much as the market will bear–the old supply and demand of capitalism– views illness as an opportunity. That is an inherently ugly concept. Imagine that rather than striving to deliver obscene profits to investors, pharmaceutical companies sought to develop the highest number of therapies at the lowest cost to consumers?

Medicine should not be a luxury good, but rather something that is accessible to all who need it. Think public education. And although I am not a market analyst and so can’t specifically address the feasibility of my proposal, I have to think that it is doable. But it will require a seismic shift in values.

As someone with skin (and plasma) in the game, I want to tell you that it sickens me that my contribution to science has been sullied by what I view as greed. Disease is a hardship, not a business opportunity. I have volunteered my time (right? I’m referred to as a volunteer in those protocols I sign) and I expect those of you who have continuously profited off of the misfortune of myself and others to reevaluate your motives. Consider this. At the end of the day would you rather see more drugs developed and marketed at costs that are affordable, thereby helping many, many people, or a higher profit margin, benefitting a few?

The answer to that question should be easy as well.