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Monthly Archives: March 2013Image
It has been a long winter, but the last of the snow is melting rapidly. In New Hampshire, we are just beginning mud season.
There have been other harbingers of spring, starting several weeks ago with the silver spigots and buckets of maple sugaring. One of our neighbors has been collecting sap and hauling it down to what looks like some crazy distillery in the woods, complete with a wood frame covered in tyvek, a trash barrel full of empties (miller lite) and a blaring boom box. Just about 24/7, he and his cronies have been evaporating down three giant pans of sap over a wood fire. It’s a labor of love, maple syrup, with a forty to one working ratio (sap to syrup).
However, my neighbor, who has a creative approach to life in general (I speak euphemistically), has found his own way to ‘stretch’ the product. A few days ago, trying to walk off the effects of my fifth infusion, I wandered on down to the maple syrup factory. My neighbor’s cousin was manning the pans, and I asked him if the massive pot of clear liquid on the ground was virgin sap. Nope, he said—It’s olive oil. After I wondered what on earth they used olive oil for, he looked me in the eyes (I’m making that part up—he specifically did not look me in the eyes) and said “It’s hard to make that much syrup.” And then I understood. They were cutting the maple syrup with olive oil.
The moral of this part of the story is: if you’re in New Hampshire and a guy named Ray asks you if you’d like to buy some maple syrup, just say no. Firmly.
Speaking of details, prior to my infusion of alimta a week ago, I got the hard copy of my recent radiology report:
“Persistent bilateral multifocal solid and groundglass opacities without significant interval change to 2/4/2013.”
There’s not a damn thing I like about the first seven words, which in plain english simply mean that there is yet cancer scattered throughout both of my lungs. However, at this stage of the game, one focuses on the second half of the sentence: without significant interval change. In two weeks, I will have my second maintenance infusion of alimta, followed by another CT scan, and then a reassessment of the situation.
In the meantime, I’ve finally kicked the virus and am feeling stronger again. Today I took a rake to the gardens for an hour and also went on a walk. I’m now exhausted but in the good sort of way that comes from physical exertion; I shall sleep soundly tonight.
When I was in high school, I fancied myself a bit of a poet. Like many an angsty teen, my own fabulous array of emotions provided plenty of fodder. Sensitive to a fault but determined to put on a tough face, I still remember a line from one particular poem: ‘let feelings never sharpen to the point of being felt’.
For a time, I followed my own advice, as I did my best to appear impervious to hurt. It was all an act; mine is, by nature, an open heart. There is a reason that the Tin Man was my favorite character in The Wizard of Oz.
Lately, my heart has often felt as if it were breaking, as too many of my friends with cancer have faced almost unthinkable challenges. Metastases in distant places—-bone, brain, liver and spine. Resultant pain and disability. Lungs that just won’t stop filling up with fluid. And in some cases, the sad realization that you have run out of options and that it may be the end of the line.
Tuesday evening, I just needed to stop feeling and thinking both. An alcoholic beverage might have helped, but is now verboten, so I plugged in the heating pad, popped an ambien, and went to bed at 7:30 pm. Too weary of spirit to visualize flying, I imagined instead floating in an inner tube down a dark river on a warm summer night. The moon was shining, and all around me were my friends who are battling cancer, each in their own inner tube. We held each others hands, as we gently drifted upon the warm water bathed in moonlight.
When I awakened the next morning I checked the text messages on my phone. There was one from Thao, only it wasn’t from Thao at all, but rather her husband. And he was letting me know that Thao had passed away on Monday morning, March the 25th.
Dear, strong and incredibly brave Thao.
She was only thirty three years old, leaving behind her husband, their beloved three year old son and a large extended family.
Last night, Thao and I once again took flight. This time, my companion weighed very little and was effervescent in appearance; as if composed entirely of twinkling lights. As we sailed through the dark skies, I recalled one of her final messages to me:
“Close your eyes, holding my hand, flying in the air, and sweet dreams tonight.”
I will never let go.
On Friday, March the 15th, I was back in Boston for my biannual appointment with my ear nose throat doctor. In addition to discussing the virus I hadn’t quite shaken, I brought up the tinnitus and loss of hearing that I had been experiencing ever since the third infusion of carboplatin and alimta. I explained that the symptoms were particularly pronounced on the right side, which did not surprise the ENT, as that ear canal was completely blocked by wax. He asked if I used q-tips and I allowed that yes, I did, but carefully. As expected, I was advised to drop that practice and to simply clean my ears with a tissue (so why do they still sell the damn things?).
Anyway, he carefully scooped away the blockage and what do you know, for the first time in five weeks, I could hear out of my right ear. When I told my tale to Dr. Shaw later in the day she laughed and said she would have to start looking in people’s ears (if you recall, my final dose of carboplatin was reduced yet again due to the combination of low white blood cell count and my hearing loss).
Jemesii joined me for lunch, and afterward I zipped up to the 6th floor for a CT scan. When I finished up there, I headed over to the main hospital, as a buddy of mine had been admitted. I hung out for an hour and then I took my place in rush hour traffic.
Dr. Shaw was good enough to call that evening with the initial read on my CT scan and although nothing had improved from the last session of imaging, it also wasn’t worse. We would stay the course and move on to alimta maintenance.
Saturday was an even bigger day, as I was going to be in attendance at the annual conference for the Association of Health Care Journalists. Better yet, I would be part of a panel devoted to clinical trials: What you need to know about clinical studies but were afraid to ask. My fellow panelists were Dr. Jeffrey Drazen, editor in chief of The New England Journal of Medicine, Dr. James H. Ware, Frederick Mosteller professor of biostatistics as well as associate dean for clinical and translational science at the Harvard School of Public Health, Ron Winslow, the deputy bureau chief of health and science at The Wall Street Journal, and moderator Scott Hensley, a digital correspondant and editor at NPR.
Speaking in front of a large crowd is something that pushes me way out of my comfort zone, but when asked to do so, I don’t say no. So there you go. Fortunately, I had a few friends in the audience who were pulling for me (Anjali Thomas, John Novack, and Christopher, Melinda and Dr. Kihan Lee). It ended up being an entirely positive experience with a lot of nice feedback and support from the journalists in attendance. Should you like to read a nice write-up about the panel, check out Covering Clinical Trials: a message for journalists and critical readers, from Dr. Judy Stone and the Scientific American blog Molecules to Medicine.
At the conclusion of the session, my five friends and I went out for a lovely meal. I was (I know I’ve been saying this a lot lately, but it is in fact a recurring theme) utterly exhausted, but oh so happy too.
So this story has its beginning over a year ago, while I was recovering from my first bout with liver toxicity.
Although I am well acquainted with my own mortality, generally I feel as if I am viewing it from a reasonable distance. At times that distance has been measured in months but generally I am confident that I’ve got another year or two (and I reset the clock every morning).
However, in the days following the precipitous rise of my liver enzymes, I had to acknowledge that my continued existence is potentially rather tenuous. And I put myself into then fourteen year old Peter’s shoes. I imagined what life would be like for him not only without a mother, but living alone with a father who spends a good deal of time on the road. I realized that it was necessary to, somehow, someway, beef up his support system.
Several months later I was on a plane to Colorado for my thirty-fifth high school reunion. Seated next to me were a mother and daughter. The young woman, name Sarah, was a student at Phillips Exeter Academy and she was flying home to the west coast for summer break. The three of us began to talk, and soon I was asking Sarah all sorts of questions. I was so impressed by her intelligence and poise, and by the fact that she portrayed Phillips Exeter as such a supportive community.
I realized that boarding school might well provide the haven I was seeking for our son.
Soon thereafter Peter and I began the process of applying to private school. And what a process it was. We visited seven campuses and each did eight interviews. Peter took the PSAT’s and SSAT’s. Ultimately we narrowed the field to five excellent schools; all within two hours of our home. With applications due in January, crunch time coincided with the switch-up of my treatment. But, and I’m going to repeat myself—somehow, someway, we did it. Applications, short essays, transcripts and letters of recommendation. All in by the deadline.
On March 9th there were two thin letters at the post office. Peter had been waitlisted at Deerfield Academy and St. Pauls. We held our breath. And then he opened an email—he’d been accepted to Phillips Exeter Academy, which, frankly, is one of the best private schools in the world.
The email (which included a very fun video) was followed by an acceptance packet with a personalized letter (kudos to the marketing department at PEA). If I may quote:
“This year, we admitted only a fraction of particularly interesting students from a large and extremely talented pool of candidates–you should be proud of your selection. The Admissions Committee was impressed by your intellectual curiosity and compassion for others, along with the strength of your recommendations and your academic record at Academy for Science And Design.”
And then: “Exeter’s classes next fall will include many outstanding young people from more than 23 countries and nearly all of the 50 states…Your class could include an award-winning traditional Hawaiian dancer…an acclaimed poet and bee-keeper…and, we hope (this is in reference to Peter) a budding engineer from Amherst who is an ESL teacher for political refugees, an avid reader and talented writer, and a freshwater fish-keeping aficionado.”
To say we are excited is an understatement. There is a lot to figure out yet, and financially, this will create new challenges. For Peter, it is the opening up of a fresh world of possibilities. The opportunity to live in a community (he will board), to engage in a plethora of extracurricular activities, to make new friends, all while getting the best education possible.
Of course, even as my heart sings, there is a heaviness. We will see much less of this child we adore, as his new school will become a second family. But that’s okay—as they say, sometimes it takes a village.
A couple of days ago I got back in touch with Sarah, the young woman from the plane. And I told her how a chance encounter had become so much more. Sarah-ndipity, if you will.
Well, it happened again—a big dump of snow. It’s not so bad though; Peter has a day off from school and I am literally grounded—until the snow plow guy comes, nobody is going anywhere and so diversion is difficult (although I did get a nice walk in down the road).
I am way behind on blogging, after a week full of activity—fatigue be damned. Sunday was the first time it all slowed down, and my goals for the day were to lay on my old friend the couch and read the Sunday Globe and Times. I achieved that and nothing more. Yesterday I raised the bar a little higher and made my way to physical therapy (still working on that pelvic floor) and I picked Pete up from school, but my motivation tanked at that point.
Anyway, I need to make up for lost time and I am going to do my best to be a blogging machine. Do not be alarmed.
I am no longer the perpetual motion machine of yore; my fourth and final round of carboplatin and alimta left me fatigued and with a profound lack of energy that I just can’t seem to shake. In two days I undergo maintenance infusion of alimta, and the hope is that it will be significantly easier minus the platinum.
The virus I have been fighting is beginning to take leave, but slowly; it is clearly one persistent bug. And, although I was pleased when I started chemotherapy that I did not immediately descend into a fog of confusion (as I had with cisplatin and taxotere) I can no longer deny that there has been a cognitive hit as well. I was once a bit sharper. To wit, today I put the kettle on to boil some water for tea, and then lay down for a nap. Fortunately David came downstairs in the nick of time, but I’m becoming somewhat of a menace.
So please, if you have emailed, written or called and I have not responded, understand that I may have simply forgotten. Yesterday Peter was streaming some music and I asked him for the name of the group. After he shared with me both song and artist I said “Got it” to which he responded (without a moment’s hesitation) “Yeah, right.” And he was—I retained neither.
When I decided to start blogging about my experience, I wondered if I would ever be at a loss for words. No, actually. However, that doesn’t mean I am always able to get them down on paper. My preferred excuse for lack of content is that I am just too busy going about the business of living to write; ie: having a fine old time.
Sometimes the opposite is true; I am either deeply depressed or feeling physically miserable. Either condition has a stultifying effect on me. At its worst, I lay on the couch in a fetal position. At its best, I am able to trudge through simple tasks like doing the laundry. I console myself with the notion that at least I am not bent toward self destructive behavior at these times—no excess, bingeing of any sort, and certainly no raging. Just an utter and totally useless stillness.
For the past week and a half, I haven’t felt very good, and by the end of last week I felt so crummy (low grade fever, congestion, and just hurting everywhere) that we went into Boston for a chest x-ray, blood work and a quick exam with Dr. Shaw. Alice (Dr. Shaw) extended my prescription for the antibiotic, but felt certain that this was primarily viral and that between chemo and my already low white blood cell count, my body just was just going to have a hard time kicking it.
So I’ve been drinking lots of fluids, coughing, blowing my nose and pacing about a bit. Of course at these times there is much going on in my head, but my thoughts tend to be quite weedy. And to not make very good copy.
That’s my long winded explanation for the lack of a proper update.
It has been a whirlwind week. Peter got home late Sunday night after nine days in Florida for winter break (thank you Migliozzi family!). He swam in the ocean, fished, tasted fried alligator and had a blast at Busch Gardens on the roller coasters, including this crazy looper de looper, Montu.
I’ve spent the past few days surfing the couch, as chemo number four was on Friday. More about that in a minute. But first the fun leading up to infusion.
David left for a business trip on Tuesday morning. Realizing I would be alone the first night after chemotherapy and feeling kind of sorry for myself, I called Melinda, who immediately volunteered to come up for a sleepover. And then on Wednesday my sister Bink flew in for a short visit. We zipped over to yoga class only to discover that it had been cancelled due to inclement weather (it was kind of slippery out). No mind. We enjoyed a nice dinner out and then came home and watched the new James Bond movie, Skyfall. I miss the days when family was just around the corner!
Thursday morning we were on the road for Boston by 6:30 am. Due to the fact that the pharmacy in the Yawkey building is being remodeled, infusion would be a two day affair. Day one was labwork and an appointment with Dr. Shaw. I had emailed her earlier about the fact that I have been experiencing both tinnitus and decreased hearing since the last infusion. Unfortunately, ototoxicity from platinum chemotherapy can potentially be irreversible, (again, I am at greater risk for side effects given my four prior infusions of cisplatin) and in addition my white blood cell count was depressed (leukopenia), so Dr. Shaw advised returning to a lower dose of carboplatin. That was fine with me. Bink and I had the rest of the day off, so Jemesii met us at MGH and we took a short ride on the T for a yummy lunch at Flour. Then we picked up my car and headed over to the Hilton in Boston’s Back Bay. I mentioned in a previous post the largesse of a good friend who has donated some of his Hilton points so that I would not have to make the drive back and forth when appointments doubled up. This is the first time I had taken advantage of his generous offer, and the fact that Bink was along made it into a night out on the town.
First though, an afternoon on Newbury Street, where we worked our way up the retail food chain (primarily window shopping). Last stop was the Barney’s in Copley Plaza, which for all intents and purposes may as well be a museum.We also enjoyed a meal in Legal Seafood, and after bidding adieu to Jemesii, retired gratefully to our room with the view on the top floor of the Hilton.
The next morning Binky treated me to room service breakfast in bed (a first for me!) and then it was time to head back to the Yawkey Building for infusion. There was a wee bit of confusion as to whether or not I should have dosed prophylactically with antihistamines, so just to be on the safe side we delayed a bit while Bink ran to CVS for some Zyrtec. No more drama until the very end when the vein with the IV suddenly became quite red and painful—what the chemo nurse referred to as a ‘flare‘ reaction. Fortunately it settled down rather quickly after the IV was removed. Bink and I had a quick lunch from Whole Foods and then, all too soon, it was time to drop her at the airport in Manchester.
I made one more stop—for prescriptions, three magazines, and two cans of tuna. I had just settled into my surfing position on the couch when Melinda showed up. Tuna sandwiches, lots of chatter and some fine companionship made the night fly by, and Melinda hung around until David got home at noon on Saturday.
After that, I started to crash a bit—the fatigue this time around has been rather stunning. It seems to grab you around the shoulders and just pulls down hard; frankly, resistance seems futile. Plus, by Sunday afternoon it was clear that the virus I’d picked up from Peter earlier in the week had settled into my chest and was now an infection. I emailed Dr. Shaw and then thought better of it—perhaps this warranted a phone call. Thankfully, she picked up and a prescription for Azythromycin was called into the 24 hour pharmacy.
Today I am feeling somewhat better—it will all be up from here.