Monthly Archives: September 2013

Piece of me

Life can’t just be fun and games, and on Friday I had a needle core biopsy. Yes, my last CT scan showed some progression. Not a lot—characterized in the radiology report as “slight interval increase” but also not a little—“consolidation at the periphery of the remaining left lung has increased in size compared with 6/17/13, now measuring 4 × 1.9 cm in greatest axial dimension compared with 3 × 1.8 cm on 6/17/13.

It was a great summer and my break from treatment was absolutely worth it. However, my lungs are getting a little noisy at night again and I’ve noticed more shortness of breath as well as a reduction in my level of energy. So…Dr. Shaw and I concluded that it was the right time to start looking into my next option. That may well be an anti-PD-1 human monoclonal antibody;  an experimental treatment which falls under the umbrella of immunotherapy. An explanation of PD-1 quoted from InforMEDical:  “The programmed death receptor 1 (PD1) and its ligands make up another physiologic immune checkpoint that is co-opted by some tumors leading to immune tolerance. Programmed death ligand 1 (PDL1) is expressed on several tumors, and can be induced by inflammation in the tumor microenvironment. On binding to PD1 on activated T cells, an inhibitory message is delivered to the T cell, resulting in T cell inactivation. Monoclonal antibodies to PD1 and PDL1 can block PD1 messaging, and allow T cells to proceed with a co-ordinated immune attack.

Essentially, the hope is to kick-start or wake up a specific pathway of my own immune system. For a very accessible overview of PD-1/PDL-1, check out my friend Janet Daily-Freeman’s post on this subject. Janet is smart, funny, kind and a whiz at explaining and I highly recommend that you take a look at her wonderful blog; Gray Connections.

The experimental therapy which I am hoping to get a shot at is MK-3475  or lambrolizumab; this agent has shown impressive results in patients with advanced melanoma. However, before I can be admitted to the trial, a fresh biopsy was required. If PD-1 protein is isolated in my tumor sample, I’m a potential candidate.

So on Friday I had yet another needle core biopsy. The location of the greatest consolidation of my cancer remains problematic; against the pleura and adjacent to my heart. Last time the radiologist went in right through my left breast (!)—this time, the approach was from the side.

Prep involved fasting and although I was initially scheduled for early in the morning, my procedure was shoved back by several hours. The biopsy itself is a curious thing; you are given ‘twilight’ or light anesthesia so you remain awake but in a rather somnolent state (not prone to arguing). After my body was arranged on the table, I was strapped in and instructed to neither move, cough nor speak. I did none of the above and I’m pretty sure that when I was taken back to recovery, I was introduced as the best lung biopsy patient ever (I really though I heard that—may well have been a sweet dream induced by twilight!).

Then the hard part started, as you must lie on your stomach for three hours post-biopsy without moving or talking. Although it was a full house when I was wheeled into recovery, I was the last to leave. At one point two nurses started talking about cider donuts…it was torture. However, not being able to speak or even move a finger, I was unable to express my displeasure.

Room with a view

Room with a view

At hour one and three a portable x-ray machine was rolled in and the condition of my lungs checked. I developed a small pneumothorax and so earned myself a suite in the Swedish Hotel for the night—I mean Lunder Building. Not a bad place for a sleep-over.

Although the main objective of the biopsy was to attain tissue for the clinical trial, we had hoped that sufficient material would be recovered to start a cell line. Dr. Shaw called this morning with the news that once again, there were only enough cells to check for PD-1. Oh well–no cell line or mouse model this time. We also discussed a story on Yahoo News pertaining to Roche’s anti PD-1 antibody; specifically the fact that when the numbers were parsed, smokers showed a greater over-all response (26%) than non-smokers (10%). Although personally discouraging, in the bigger picture, it is great news. Smokers tend to have a more complicated mutation profile at diagnosis, and therefore have not responded as well as non-smokers to the inhibitors that target a specific mutation, and which have monopolized breakthrough status in the treatment of lung cancer in recent years.

I see Dr. Shaw in a week and at that time we should know whether or not my biopsy was positive for the PD-1 protein. If it is, I will likely go on trial and cross my fingers that I’m one of the 10% who respond. And if no PD-1 protein is found in my sample, well, that’s another discussion.

A dose of self improvement

First, a quick announcement. Charlotte Huff has written an excellent article about the relationship between stigma and cancer for the online magazine Slate. I had the pleasure of being interviewed for this piece; if you’ve not already done so, please give it a read:  A Sick Stigma.

Back to my roots

Back to my roots

Alrighty then. I just wasted I don’t know how much time trying to take a selfie and in the process discovered that lighting is key; dimly lit fluorescent is far kinder than accentuate-every-wrinkle natural light. And although my iPhone is perhaps not quite as truthful, it is infinitely more forgiving than my little leica.

Appearances aside, the point of this exercise was not to demonstate how clean my nails are but rather to show off some new blonde highlights and freshly waxed eyebrows. Yes, it’s true; I’ve rendered myself high maintenance. And Tiffany (from Supercuts), I am sorry, but my heart now belongs to Oksana.

This rash of self improvement all started with the removal of a varicose vein on my right leg. As a cancer patient, I am at greater risk of developing blood clots, and so lovenox, a blood thinner, is given prophylactically two days prior and for a month following the procedure. It is administered by injection and I chose to do this myself (in the stomach!). I got a bit woozy the first go around, but now it is no big deal.

Prep also included the wearing of thigh-high compression stockings (post-op as well) and slathering my right leg in a numbing cream before wrapping it in saran wrap two hours before each procedure. All very sexy (not). The procedure itself took place over three appointments:  Endovenous laser therapy (thermal ablation) followed by two sessions of surgical removal (ambulatory phlebectomy). Although it sounds terribly gruesome and possibly painful, it was neither. Easy-peasy actually, and I am so very glad I finally took care of something that made me self-conscious and which was uncomfortable to boot.

Simple but amazing tool

Simple but amazing tool

Of course, one additional perk was that I got to stay at the surgeon’s home in-between appointments, which gave me lots of Melinda/Kihan time. As usual, my dear friend Melinda took fantastic care of me. Upon seeing how much I struggled with putting on the compression stockings, she whisked me off to a medical supply store and then purchased the little gizmo on the left. The compression stocking is turned inside out and pulled down over the center section. You then place your foot through the opening, and grasping the handles on the side, pull up towards your thigh. Ingenious!

Drop everything

It’s been a busy couple of weeks and I’ve got some stories to share. But first….this. I’ve finally gotten hip to the fact that my children’s preferred means of communication is text messages. And now that I have a phone where texting isn’t onerous, I drop them all a line once in a while. In fact, I’d sent quite a few messages to Peter that had gone unanswered. I figured it was simply an indication that he was quite busy but also adjusting well to life at Phillips Exeter Academy.

Texts to Mr. Peter

Texts to Mr. Peter

Well, yesterday morning I awakened to exactly the message I’ve been waiting for:

A snippet from our conversation

A snippet from our conversation

I immediately responded like the love-sick puppy that I am. Several texts later we agreed that I’d meet him at the Academy at 1pm. When I arrived we walked downtown for lunch, strolled along the river and then went back to his tiny room. He sat at his desk and I stretched out on his bed. We chatted some more and then, just like old times, he started his homework while I took a little nap.

Absolute bliss.

I’m alive and…well…

Grateful. Every damn day.

David and I had an appointment with the counselor this morning. Her name is Heather, she’s been working with us for over a year, and she is a melanoma survivor with an intimate understanding of the stressors cancer puts upon a family.

Today one of our topics was how to approach the future with realism but also hope and gratitude; one day at a time. I shared the fact that first thing every morning I say to myself, ‘I’m alive’—three times for greater emphasis.

Heather asked if we had ever heard the Kenny Chesney tune (with Dave Matthews) “I’m Alive”. Dave thought he had, but I hadn’t—if it’s not Patsy Cline or Lyle Lovett, I’m not much for country music. But, I am open minded, so Heather played it for us. I must say, it made me smile and cry at the same time and I understand why Heather described it as a treasure. And now I’m thinking I ought to share it with you:

The nature of things

In the midst of all the hectic goings-on, I’ve still found time to marvel at the natural world. Frogs, newts and salamanders, who would love to share our pool but alas, the chlorine is not their friend. A fat garden spider whose neck-high web I inadvertently walked into (like a ligature!), inspiring him/her into defensive mode.

One morning, a delicate mushroom suddenly sprouted in a potted plant and which resembled nothing so much as a paper parasol. While on a walk, a dragon fly lying stunned in the road. Once home, I lay it in a bowl on the porch. The next morning the dragon fly was not there; I soon located it clinging to the inside of the screen and looking quite revived. Taken out of doors, it immediately flew up and away.

At first light, I am often awakened by the song of a robin who has roosted on the same branch outside my bedroom for three summers now and who favors an early morning wake-up call (4:30 am). We have several apple trees—presently bursting with fruit and filled with various tribes of song birds gleaning in a ‘mixed species foraging flock‘. The season’s last butterflies crowd those bushes that are yet in bloom and the cadence of the katydids has slowed considerably with the onset of cooler nights.

Back in June, a smallish snapping turtle spent an entire day depositing eggs at the edge of our yard in a decidedly haphazard pattern; we decided it was her first go at motherhood. Several days ago, David spotted a hatchling and now there are several little turtle-shaped slots in the lawn.

The wild grasses have gone to seed; beautiful swaths of yellow green, mauve and champagne colored froth lining the sides of the road. And now that the temperature has dropped into the forties at night, some of the leaves are beginning to turn as well. Goodbye summer, hello autumn.

For Pete’s sake

The month of August flew by; visits, appointments, camp and ironing. Not necessarily in that order.

Soon after my stay with Melinda and Kihan, our friend Julia and her boyfriend Keith travelled from Boston to join us for a meal which I prepared; in itself a simple joy (feeling well enough to cook!). Pete’s friend Miggles was staying over and Julia shared photos of her recent trip to Finland. The next day Pete and I dropped Miggles off in Concord and also attended a Love Your Neighbor event hosted by our friends at New American Africans.

Love Your Neighbor

Love Your Neighbor

The following week, Peter and I made a day trip to New Bedford for a meal with Jamie; we’ve not seen him since Christmas. Our daughter Jemesii and Jamie have filed for divorce but, realistically, are both happier now. As Jamie’s been part of our family for some years, it is important to me (and Peter) to maintain contact and just check up on him now and again—I’m glad we did.

And then, on August 18th, David dropped Peter off at his third Camp Kesem, a wonderful summer camp for children who have or have had a parent with cancer. Some of you may remember earlier posts from 2012 and 2011—and I wrote a blog about this year’s experience for Everydayhealth.com. There was also a report on Fox News about Camp Kesem MIT, and if you look closely, Peter makes two appearances.

Yet again Peter found the experience of camp transformative and a highlight of his summer. As we have done previous years, the two of us stopped at Flour Bakery & Cafe post pick-up for an early dinner. Over yummy roast beef sandwiches, Peter spoke with enthusiasm but also a certain sense of sadness; every year some of the campers and counselors ‘age out’ and the uncertainty of reunion is never easy.

Post Camp Kesem 2013

Post Camp Kesem 2013

However, hellos and goodbyes are all part of life, and Peter is already looking forward to Camp Kesem next year.

Summer wouldn’t be summer without a visit to Mary and Raleigh’s home in Meredith, and now that I can indulge, I was able to enjoy one of Mary’s special martinis (an olive and a pickled onion). We had a great time; leaving with full bellies, fuller hearts and very sore cheeks (from all the laughing).

David and Peter also took a special boy’s trip to Mattapoisett. Four days of fishing, crabbing and sleeping in the camper with one happy but smelly golden retriever (sick from drinking seawater). So glad I wasn’t there, and yet got to enjoy some fresh crab upon their return.

And then, the frantic days leading up to Peter’s departure. All those button down shirts to iron. An exercise in matching—I asked Peter to put together various ‘outfits’, pants, shirts and ties. I shouldn’t have worried; he’s a natural. David taught him to tie a tie—again, Peter mastered this new skill with ease. As he was going out for crew (intramural), he would need to take a swim test so we went over his strokes. It all came so easily that I teased Peter he was born to this (prep school) life.

In an exercise in sentimentality, the two guys watched Milo and Otis, Peter’s favorite movie ever. Aside:  Milo and Otis is a sweet flick about the close friendship between a pug and a tabby cat. Narrated by Dudley Moore and free of ‘artificial’ special effects, it is delightful and Peter must have watched it fifty times. However, I always felt a nagging sense of unease about some of the perilous situations the actual animals were placed in during filming. Orange tabby cats are rather ubiquitous and I hoped they weren’t considered expendable. Well, Peter, if you’re reading this, stop now. I happened upon this site today and my first fears might well be realized. Just another example of do your research (or, not).

Anyway, the actual day came, and a week ago we dropped Peter off at PEA. It was hectic, heartwarming and occasionally humorous. Example:  The Duffs went to the bookstore intending to get dad (David) some PEA swag, and while there noticed that all the other families were purchasing books. Oh yeah….books! David walked back to the car to fetch Peter’s class list and while Peter and I were sitting on a bench outside the store he turned to me and said something along the lines of, “I have this awful feeling we don’t know what’s going on…” I told him not to worry, we weren’t the only ones and that it would all be figured out.

Two days later I returned to campus for a meeting with a counselor. I’d brought along a rug for Peter’s room and we met up. I must say, the young lad was looking dapper:

Making a pretty face for mom

Making a pretty face for mom

Fun trivia fact:  Peter is in a single room, small and rather like a monk’s cell. Quiet though, and private. And….it’s the same room Mark Zuckerberg lived in his junior (or when he was an ‘upper’, to use the PEA lexicon)  year at Phillips Exeter Academy (he moved across the hall the next year).

One week in, all seems to be well. Peter’s already moved to a more advanced spanish class. He’s had his first crew practice which was ‘crazy’, but fun. I don’t believe he is a bit homesick. I think our boy is going to be just fine. And the grown-ups? We’re going to be okay too.

One big party

Oh, how I have enjoyed this break from treatment. In fact, my entire family has benefitted: for the first time since he could likely recall, Peter’s had a mother who felt great and was possessed of sufficient energy to do all sorts of mom things. Staying up late, and watching movies. Cooking and cleaning. Going on walks and having long conversations. Acting as de facto driving and swim instructor. Shopping for school clothes (button down shirts and pastel colored pants—our own little preppy). And, first thing every morning, sneaking in a little snuggle. It’s been grand.

Although not nearly as important as being able to be present for Peter, I’ve taken a lot of pleasure in some of the other perks of non-treatment. Mental clarity but then again, the ability to kick back and de-stress. I’m talking about alcohol. Nothing over the top, but rather the simple, adult pleasure/privilege of an occasional glass of wine or a cocktail. For a year and a half, my liver enzymes made it necessary to completely foresake alcoholic beverages—if I may say so, there is something intrinsically unfair about having cancer and not being able to drink.

I got used to it. Discovered mocktails, and congratulated myself on my ability to abstain. Then, several weeks into this break (having gorged myself on grapefruit, another long term no-no), it occurred to me that I could have a glass of wine. The first sip or two felt a little foreign, but just like riding a bike, you never really forget how. I was, so to speak, back in the saddle.

Again, it’s been fun. On one memorable afternoon, I was shopping at Salvation Army. When I went to pay for my purchases it became apparent that I’d left my wallet at home. I called David and asked if he might consider bringing it to me…and, I added some incentive. I would take him out to dinner. My dime, his choice.

He made it to the store just prior to closing. Treasures in hand, we headed (in our separate vehicles) to Republic, our new favorite hangout. It was a lovely evening and we sat out front on the patio. I ordered a martini and David a margarita. A young man at the table behind us asked about my white circle tattoo. I commented on the shirt the fellow to our right was wearing (adorned with magic 8 balls). The couple to our left soon engaged us in conversation. Before long it was ONE BIG PARTY. I got through two martinis that night, made at least four new best friends and a good time was had by all.

Perhaps a week later, we dropped Peter off at school. David had an appointment in NY the next day and I a CT scan in Boston. After my scan, I should have gone straight home and walked the dog, but I was feeling a little anxious and didn’t really want to be alone. On a whim, I stopped at a local restaurant and sat down at the bar. I ordered a martini, up with an olive and a twist of lemon. After one sip I realized that this was a serious martini, and that I was in over my head. A woman sat down in the empty seat to my left; ordered a glass of wine, an appetizer and began to read from her Kindle. Suddenly she turned to me and asked if I came there often. I confessed that at the age of 53, this was the first time I had ever sat at a bar by myself and ordered a drink.

Well, we got to chatting. Soon she was sharing her appetizer with me and before I knew it, three hours had passed and my new friend and I were convinced we were married to the same person. Thankfully we never got beyond a first name basis.

I followed the yellow line home (I know, I know—I truly just had one drink). Buddy was fed and let out for a quick pee, and I fell straight into bed. I awakened briefly around 11 pm, still under the influence. At 2 am I woke up once again but sober as could be. No hangover, which I attribute to my Swedish heritage but which David says is actually due to the chemical simplicity of vodka (compared to a complex alcohol like wine).

And, I’d had the strangest dream. Anjelina Jolie and a friend of hers were at my house drinking wine. Evidently it wasn’t very good, as they’d mixed themselves another concoction (but thoughtlessly, not one for me). I had to excuse myself to go wait on some tables. Suddenly I was back at Mr. Steak, the restaurant I’d worked in when I was seventeen. I was taking the order for a large family (what we referred to as an ‘eight top’), and they were trying to convince me that they all qualified for a student discount. The mom had a flamboyant scarf on her head, spoke with a german accent, and looked like a drag queen. The children were dressed head to toe in 1970’s style denim. When they asked me to describe an item on the menu I said I’d have to go ask the cook; I’d not worked there in thirty years. The cook was a real old guy—maybe one of my former co-workers was having the same dream.

Anyway, as I lay there thinking, I remembered a review in the NY Times by Dwight Garner concerning Lawrence Osborne’s new book, The Wet and the Dry, as well as a memorable quote from Mr. Osborne:  “Vodka; it’s like an enema for the soul.” Well, I’d certainly just proved that. My mental slate wiped clean, I fell soundly back to sleep.