Monthly Archives: July 2012

Just a few things

First, Jemesii and Jamie have adopted a new puppy, and her name is Fig. So far we have had to satisfy ourselves with photos and the little videos Jem posts on Facebook, but Miss Fig is cute as a button and we are very much looking forward to making her acquaintance.

Secondly, a shout out to my stepfather, Jim. After a lifelong career as an engineer, educator and administrator, Jim has not taken retirement sitting down. He is the full time caretaker of our mother Evalynn, whose health has rapidly declined in the past few years. She has battled both breast and kidney cancer and now must contend with limited mobility in addition to advanced macular degeneration. An excellent painter at one time, my mom was also an avid patron of the arts, an interest she shares with Jim. Their home in St. George houses a large collection of paintings and sculpture. Now almost blind, sadly much of what mom previously enjoyed is no longer viable, but my parents have continued to attend local concerts and often listen to books on tape together.

In addition to caring for mom, Jim does all of the cleaning, cooking, shopping, and maintenance of their yard and pool. In his spare time he plays a mean game of golf, produces and records his own music, dabbles in photography and knocks out creative writing. In fact, he recently wrote and published a charming e book, titled Two Boys and a Dog, which can be purchased for download from either Kindle or iBooks. At the age of 79, Jim shows no signs of slowing down.

I am inspired by my stepfather’s enthusiasm and motivation, and feel like a bit of a slacker in comparison. However, I have a small announcement of my own:  I am drawing and painting again.

Of all the mysteries in my life, one of the greatest is why it has become so very difficult for me to devote time to making art. Ever since I was a small child, I have wanted to be an artist, and I remained devoted to my craft until I became a mother. Since then, it has been fits and starts. Until my fiftieth birthday, I was still using the tired line that I was going to be an artist when I grew up. I will allow that I have always exercised creativity, but lately that practice has been primarily limited to writing and photography.

However, pencils and paint were my first love and I am ready to revisit them. In fact, after I tuck into a little lunch, I’m going to wedge open the skylight in my little ‘studio’ under the eaves, and give it another go. May it become a habit.

Getting the joie back in the vivre

I’ve been on drug (LDK378) again for over two weeks now and my liver enzymes look great. Business as usual, but with a less than subtle change; it is increasingly obvious that my formerly sunny attitude has lost some sparkle.

Sustained stress can be a real buzz killer, and we are attempting to address several sources of anxiety on the home front. However, even as the potential for greater serenity becomes a reality, I am aware that something else is missing.

Somewhere along the line, between work and worries, joy has been neglected. The Merriam-Webster online dictionary defines joy as such:

a : the emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires :  delight  b : the expression or exhibition of such emotion : gaiety
: a state of happiness or felicity : bliss
: a source or cause of delight

As I read these words, joy seems very far away indeed. Although relieved that I could stay on trial, I cannot shake my unease as to what is next. With scans every six weeks, and automatic expulsion from the trial once statistical progression has been reached (20% by RECIST standards), I am unable to settle.

It has been my intention to channel the underlying angst I am feeling into proaction; I am staying very busy, with particular focus on researching and realizing some opportunities for Peter. Last night David expressed gratitude for my hard work, and to have his recognition felt good.

However, even a flurry of productivity isn’t always enough to keep sadness at bay, and on those occasions when depression simply flattens me, I grab a book and head to bed.

Pema Chodron, a Tibetan Buddhist nun, is the author of several books in which I found great solace following my initial diagnosis with lung cancer. I am reading those books again, starting with When Things Fall Apart–Heart Advice for Difficult Times. The following paragraph offers apt resonance:

“Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. And then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.”

The word joy shines like a bright jewel at the end of that passage. Regard the company it keeps; grief, misery, and the somewhat pedestrian relief. All mixed up together.

I think, perhaps, I have become preoccupied with fixing things. In a rush to identify what is broken, my perception has become selective. Seeing what is wrong, I am missing what is right. It seems obvious, and simple really.

But it’s not. Life is complicated and so am I. However, a determined student, I find myself ready and willing to take my lessons when and where they come. I shall start by welcoming joy back to the table; to let wonder and delight be part of the conversation again.

Beauty and the background

to know that you’ve done everything you could

Lauren Lynch, a new friend and participant in INSPIRE, the online support group for lung cancer that I belong to, posted today about her father’s passing. I was so very touched by her words and asked Lauren for permission to share them again here:

“On July 8th, we lost my Father. July 7th I had an anniversary party for my parents with a Fleetwood Mac coverband. Dad could not attend, so the band came to the house and played his favorite songs acoustically. Dad was able to enjoy the music, the whole room was nothing but love and we all experienced a very cathartic moment. I am including my eulogy here. It is not a typical eulogy telling memories of better times, but rather a dialogue that I think needs to be had and some perspective of how I survived my Father’s Cancer. I wish you all love and hope on your journeys and thank-you for all of the advice, support and kind words. ❤

First of all, I want to thank everyone for everything. For calls, cards and emails. For medical advice and a shoulder to cry on. For showing my Dad that his family would always be in good hands. Many people here know the pain I feel today… The pain of losing a parent. The truth is, I cannot imagine my dad being here for one less day than he was. Together, we fought the hardest battle we could and fortunately we made it to that point where we all felt it was okay to let go, it’s sad and it hurts, but it’s also a gift to know that things were not left unsaid, to know that you did everything you could. My Dad died knowing that you would all be here, even if he couldn’t and I know he was at peace.

Perspective is an incredible thing. There were so many pivotal moments of this battle that I can either chose to look back on in anger or I can rise above my initial emotions and see life through a different lens.

When I think back to Daddy’s diagnosis I can remember how I shut down for three days, angry at the world…thinking life was so unfair to me and hasn’t this family been through enough. Or I can remember how we regrouped and made the decision that even if Dad wasn’t going to be here as long as we wanted, we would never let him live without Hope. We were never after a cure, we were always after Hope.

I think back to Dad’s 62nd birthday, March 1st, when we learned that the cancer had spread to his pancreas. I can remember the anger I felt, at the disease, at the doctors and all the tears that were cried, or I can choose to remember the strength of my Dad’s arms when my sister and I crawled into the hospital bed with him to be comforted…That’s 3 grown adults, 1 hospital bed.

And last Saturday we could have been distraught once we realized there was no way he was making it down to the party, but instead we chose to be thankful that he was home, that family and friends were by our side, that he still enjoyed the music and that he was still able to tell me “I love you” the morning before he died.

It’s all about perspective, and what you choose to think about. Those are my choices.

To switch gears a bit; I feel this needs to be said, and I hope it does not come off as being callous.

If you’re sitting here today and have found yourself feeling thankful that cancer doesn’t “run in your family”… please don’t….. I’ll let you all in on a little family secret…before October of 2010, cancer didn’t “run in our family” either.

And if right now you find yourself saying, “well I don’t smoke, and I eat healthy and I exercise!” That’s great–I commend your healthy choices and wish that that was all it took. One of the first things we learned while attending Gilda’s Club Cancer Support Center, is that Cancer does not discriminate. I feel as if people have this sense of relief when I tell them that Daddy smoked. Like they are safe. In this last year I have met 20 year olds with rectal cancer, 30 years olds with extensive breast cancer and 40 year olds on their death bed. I am sure they thought the same thing, I eat healthy, I don’t smoke, I’m young… I’m safe.

My point is two-fold. First…a cancer diagnosis does not need justification. There is not one to be found because no one deserves to go through what my Father went through. There is no blame to be had.

Secondly and this is the most important part: never live your life in fear, but don’t be so naïve that this could never be you. If you feel yourself thinking about someone from you past…call them. If you have someone special in your life, tell them…and tell them why they mean so much to you. And if there is some place you have been wanting to get to…go there. This doesn’t have to be on a grand scale; a trip around the world. I am talking about the little things, the break from routine.

The day we found out Dad had cancer, we hiked to the top of the Dinosaur Tree. Daddy landed himself in the hospital the next day, but we did it. Dad always wanted to go back to Sausalito…so we went…He also went to Devil’s games, visited his grandparents’ grave in Sleepy Hollow, helped me build the bar, threw Abbey around in the pool, watched the Bobsled Team win the world championships, reconnected with long lost friends and gave unheard advice to his daughters. He did it all and he did it while battling cancer. These things would have been much easier to accomplish had he started years ago and not been fighting for his life, fighting for his girls…

But it’s back to that perspective thing again. Like Gilda Radner said, “If it wasn’t for the side effects, everyone would want cancer.” Because it is that thing that jilts you alive and makes you look at life from a new perspective. You rise above all the mundane crap that fills our lives and you become aware of what is truly important.

Yesterday was a tough day. Between dealing with Contractors, plumbers, securing lighting for the bar, weighing in on funerals, getting a brick wall built, wrangling our wood worker and trying to figure out how the hell we were going to pay for all of it. I was tired and stressed and just wanted to curl up in a ball and forget the day ever happened. But I didn’t. Because I had promised myself that I was finally going to go to the little red light house under the great big bridge. Dad and I have been saying we were going to go since I read the book as a child. We never made it together, but I wasn’t going to use that as an excuse. So I walked down there with my equally exhausted roommate, and we jumped the fence to the weathered stone in front of the light house and lay there with the bridge running over top of us and the lighthouse behind and I felt this wave of relief. And I felt Dad and I asked him for help in writing this damn speech and I asked him for guidance, and I told him how much I loved him and wished he was there. And we listened to Roy Orbison’s You Got It and I felt thankful and relieved that I hadn’t let the day get the best of me. I didn’t let myself get so clouded by the daily crap that I couldn’t seize the moment.

If there is one thing to be gained from all of this–that is it. Two lessons about life…it waits for no one and it goes on.”

The bar that Lauren’s father helped her build in NYC will be opening soon (I told her that as soon as I was able, I would belly up). It will be called Harlem Public and will be located on 149th and b’way.

Getting some things in order

Looking back, I see that I began my previous post with the words, “First, the good news”.  What I didn’t get around to saying was that I’d been struggling again with an old demon of mine, depression.

The day after my return from Colorado, David off for work and Peter at a friend’s house, I was resting on the couch, quite alone with my thoughts (sometimes a treacherous place to be). Without warning, a tidal wave of grief just rolled over me; literally taking my breath away. Suddenly I was sobbing and gasping for air, absolutely panicked.

Fortunately, I had the good sense to call my daughter Jemesii, who assumes an incredibly calm and capable demeanor in times of crisis. She talked me off the wall. As luck would have it, two of my closest friends chose that particular day to also check in and I managed to pulled myself together.

However, one thing was clear. I was feeling completely overwhelmed.

While in Boston on Monday, I ran into my favorite thoracic social worker. We had a brief chat about both the wonder and the very real strain that accompany extended survival with a terminal illness. It is increasingly difficult, I explained, to maintain a constant state of gratitude, when in fact the very things I am grateful for are taken for granted on a daily basis by healthy folk. And how those of us with advanced cancer have necessarily adapted our expectations (as have our families). Unable to rid our bodies of disease, we live with it; an uneasy cohabitation at best.

During my recent convalescence, David and I had some meaningful conversations about practical steps that could be taken to help me feel more in control again. Twice a month, someone will come to clean. David and I will begin marriage counseling with a therapist who is schooled in cancer related issues. Although not our first go around, we could really use a refresher. And, we are looking into boarding school for Peter’s junior and senior years of high school.

As strong as my resolve to continue surviving may be, the hard truth is it may not be doable. And, should my health deteriorate, it will be very difficult for David (who travels quite a bit for business) and Peter to get by. It would really ease my mind to know that Peter had an established community and a supportive environment to fall back on, particularly in the event of my passing. I feel there is real potential for the right boarding school to provide that.

And as for me? My anxiety has greatly lessened now that some proactive steps have been put in motion. Being able to get back on trial came as a great relief. It wasn’t just my physical self that was out of balance; I’d been long overdue for some major housekeeping in the emotional department as well.

Back on LDK378

First, the good news. On Monday my liver enzymes had fallen to the acceptable range and I went back on LDK378 at 400mg. As long as I am on this particular therapy, I will stay away from alcohol, levaquin and NSAID’s (advil had been my anti inflammatory of choice). I have been eating lots of liver loving foods (beets, beets and more beets) as well as a daily dose of prunes and bran: my friend Mateo suggested All Bran Buds, which I am happy to say are highly effective.

For the time being, ice cream has been added to my diet, and I have already gained back four of the pounds I lost. Happily, my wheezing is much improved and my energy is back in spades.

Perhaps best of all, my spirits have risen accordingly; I am back in fighting mode.



Martha’s Vineyard for the fourth

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After the good news on Monday, David and I joined our son Peter, who had spent several days at the summer home of friends Frank and Cindi, in the little town of Oak Bluffs on Martha’s Vineyard. Fishing, walks to town for ice cream, frolicking in the waves with his pals and a barbecue all added up to a great time for Pete, and his parents were glad to get in on some of the fun as well.

We had taken the ferry out of New Bedford to the Vineyard, and the day of our return our daughter Jemesii was able to join us for lunch. Peter can never get enough of his older siblings, and so seeing his sister was the perfect end to a splendid week.

Time for a personal update

Now that it’s all over but the shouting, I can tell you that I am ever so happy that last week is history.

It had been an unsavory mix of constipation, infection, insomnia and liver toxicity. I felt awful, with a fever three nights running. Aches and chills, splitting headache, nausea and a total absence of appetite. On Tuesday, I started taking levaquin. On Wednesday, I had a chest CT scan and labwork:  my liver enzymes, which had been rock steady for weeks, were starting to climb. I was to stop LDK378 and levaquin both. Although exhausted, I never managed to sleep a wink that night; my mind going a million miles an hour. I have learned since that insomnia can be a side effect of levaquin, and in conjunction with nightmares, hallucinations and a host of other symptoms, a possible sign of a serious reaction.

Over the next two days my liver enzymes continued to rise, peaking at around ten times normal, although still significantly less elevated than the last go around with toxicity. I started on azithromycin for the chest infection and Thursday evening, after eight days without a bowel movement (which proved stubbornly resistant to both Miralax and glycerin suppositories), a prescription of lactulose finally did the trick. As tired as I was, I could have done a little jig. I also received this congratulatory email from my mother in law, with some advice should I ever find myself in such a ‘situation’ again:

Hallelujah(!) and (I’ll say it, so Kill me!) praise the Lord for Ducolax!  Could not believe what Dave reported about your recent days of pure hell.  My first thought was of the simple suppository (mum used to carve a wedge out of ivory soap to ease our blocks of cement to the Glory Land) but it seems that on this carefully controlled regimen, one cannot revert to old fashioned methods.  Not to digress, but to digress, John nearly died of croup several times as a young’n.  I remember many nights spent in a bathroom full of steam and, in the worst scenario, trips to the hospital at 90 miles an hour.  Then I heard that my Aunt Patty (mum’s sister), as a child, had croup as well, and once, during a severe bout when she was turning blue, Grampa Tripp dripped 2 drops of kerosene onto a sugar cube and fed it to little Aunt Patty.  It broke up the congestion and she resumed breathing!  This has nothing to do with what you’re going through, but it goes to prove there are times, when all else fails, Old Fashioned methods should not be dismissed.  When one has ingested food for 8 days and nothing is coming through the Glory Land, the troops have to resort to surprising the enemy from the rear.  It has worked in wars through the ages, and you, my Darling, are fighting a war.  I think you need me, my knife, and my ivory soap.

 I love you, mum

 P.S.  I have a whole box of rubber gloves left over from a few years ago…..

Today we returned to Boston to meet with Dr. Shaw, and my liver enzymes are trending down. Better yet, Dr. Shaw got the okay from Novartis for me to continue LDK at a dose of 400 mg once those enzymes have returned to normal– I had been certain I would only be allowed to go back on trial at a lower dose if at all. AND, the CT scan, aside from a new area in my right lung which likely represents infection, was STABLE. In fact, there is a “Slight decrease in ground glass opacity at the lateral left base…”

I really hadn’t expected the wealth of good news today, and in fact figured the focus would be on what therapy we would try next. I am thrilled that I will be allowed to stay on LDK378 longer, and happier still that my scans were stable.

Obviously, there will be no more sips of wine or outlaw margaritas, no more levaquin or NSAID’s. I’m going to focus on eating foods that are beneficial for the liver, and yesterday I had beets for breakfast, lunch and dinner. I’ve got some weight to gain back, and making sure I stay regular is a high priority.

My body sent me some powerful messages last week, and it got my full attention. I’m listening, and will continue to do so.

Shared: an amazing tale of survival

As a follow up to Craig’s very informative post about ROS1 mutations, I have asked my friend Mateo for permission to reprint his sister Sara’s experience. Mateo, like Craig, is someone I met thru the online lung cancer support group at INSPIRE. The lung cancer support group is a place where anyone (participants come from around the globe) touched by this awful disease can post a question, requests for prayers, or just share whatever is on their mind. Without fail, other members will respond with compassion, caring and an amazing wealth of information drawn from hard won personal experience. Mateo’s story:

A Hopeful Message

I wanted to share with those lung cancer sufferers and their loved ones this update on my sister Sara. It’s a very hopeful message.

About six months ago, I joined the online INSPIRE community. My sister Sara (age 48 and mother of two boys, ages 11 and 7) had just been diagnosed with stage IV adenocarcinoma, characterized by malignant pleural effusion. My first message was titled “Cancer Strikes My family: We Never Saw It Coming.” I was immediately showered with compassion by everyone there (Judy, MichiganLynn, DKHarris, Tina-1962). And I was educated.

The INSPIRE message board enabled us (myself and three other siblings) to identify the key words necessary to understand Sara’s condition. Very quickly we learned which questions to ask the doctors. “IntheAir” reached out right away and gave me hope (we’ve exchanged a hundred emails since then), and “CraiginPA” was very instrumental in encouraging us to have Sara’s initial biopsy retested at Mass General Hospital, which we did (her initial biopsy had come back negative for all mutations). Sure enough, Dr. Alice Shaw’s team discovered markers for ROS1. Sara had already endured 3 rounds of carboplatin/alimta by then, and she was not doing well at all. We believed her to be nearing the end. I wrote to Dr. Shaw and pleaded for Sara’s appointment to be moved up a week, and she kindly consented. Sara’s body was in bad shape: all of her counts and levels were way off. Many things weren’t working. Dr. Shaw’s team worked on her for several days around the clock and got her strong enough to enroll her in her clinical trial for crizotinib. I have to emphasize that this was no small feat.

At the time, Sara had two small (4 mm and 2 mm) brain metasteses. She was set for proton therapy, but that procedure was delayed as Dr. Shaw wanted to try to stabilize the lung cancer first. The cancer had spread to her other lung and a spot on her liver was also detected. Sara’s pleural effusion was a steady 1100 cc per day (it had gone down after the first round of chemotherapy, but it began climbing, much to our despair, between rounds 2 and 3). Dr. Shaw put her on crizotinib about 12 weeks ago. The impact was almost immediate. Sara’s acute pain was gone in less than 48 hours. Steadily, her pleural fluid diminished, and with it, her cough. It took about a month for the fluid to stop altogether. She had been on 4 liters/hour of supplemental oxygen and she required less and less. She regained her appetite and started putting on the weight she’d lost. After one cycle (28 days of crizotinib at 250 mg twice a day) she had shown an amazing response. Her side effects were almost nil: some ankle swelling, which she controlled by elevating and wearing compression socks, and some of those visual effects (brief shadowing images when the lighting shifted suddenly).

But this story gets better. After two cycles, she was scanned. The pleural rind covering her lung was resolved; she would not need decortication followed by talc pleurodesis. In fact, she had her pleurex catheter removed a month ago. Her lung is now able to expand more and more. She’s completely off of oxygen and walking up to four miles a day. Her liver function (indicated by albumin level) is 100% back to normal. The larger of her brain mets has shrunk to the point where doctors no longer deem radiation necessary, and the smaller one has completely disappeared, indicating, perhaps, that crizotinib crosses the blood-brain barrier.

She has her life back. She’s hauling her kids to ball games and getting back to work. Her house is her castle again. She’s cooking and gardening and entertaining family and friends. She’s overjoyed to be mothering her boys again and will resume yoga classes again this week.

Of course, we are very concerned about drug resistance and we continue to monitor reports on second-line drugs and immunotherapies. Dr. Shaw has since identified Sara’s fusion partner (ROS1 gene has fused with CD74 of chromosome 6, i believe), and she and her team have created a cell line so that they can try to learn through chemosensitive tests which second line drugs are likely to work for Sara if or when the time comes.

If I may . . . Sara’s case exemplifies why people in the know constantly urge people to go in for further testing. As more and more mutations are discovered, there are more options besides standard of care; better options in many cases. Were someone I know to be stricken with NSCLC, I would recommend watching webinars of the latest findings. For example, a site like this one, which features a number of recent short lectures by some of the world’s leading lung cancer researchers, including dr. Alice Shaw:

I am grateful to everyone who has shared advice and extended sympathy to me and my family. I will continue to study the new findings coming out and to share any information that comes my way.