Never underestimate the power of a greeting card. The image on the left is from a blank (no words needed) Hallmark card I purchased at the pharmacy yesterday.
I have a dear friend who is at a tough place in her battle against lung cancer. She remains very hopeful that the treatment she just began will be effective. My friend is a formidable fighter–fierce, in fact. Full of life and a beautiful spirit, she could not be any stronger or more brave. If that stone can be moved, she shall do it.
Posted in Attitude
An essential component of a loving long term relationship is gratitude; genuine appreciation for and recognition of the beloved. It is also important to not approach gratitude passively; it should be expressed. Undoubtedly one of the most effect ways in which to express our appreciation is caring. To care for, to take care of.
In my last post I talked about loving our bodies. For better or worse and until death do we part; there is no more intimate and/or long term relationship than this.
There was a time, not so long ago really, where I took my physical self for granted. Bit of a slow learner, I am. Now, I’m doing my best to give my body all the attention it deserves. One of the most important steps I have taken is to commit to yoga classes. On Tuesdays, I attend a class at the local YMCA, and on Thursdays an evening session for cancer survivors. Both classes are led by instructors from a really wonderful non profit organization called YogaCaps, Inc. From their web page: “…there is great potential for yoga as a transformational tool for social justice.”
Yoga as a transformational tool, not just for our bodies but social justice. It is easy to imagine that a world in which everyone had access to the calming influence of yoga might indeed be a better place.
Two members of my family are particularly pleased that I have finally gotten the yoga bug. One of my sisters, Laura Pastor, has been practicing yoga since 2003. She is also an avid runner, including marathons, and began taking yoga classes as a way to open up and stretch her muscles. She practices Bikram, Hatha and Vinyasa Flow and has recently begun sharing her love of yoga as a teacher.
According to Laura, she “enjoys the mental and spiritual benefits of yoga even more than the physical flexibility that it provides.”
My stepmom Carolyn Kersten has been practicing yoga for seventeen years now. When I first met her, she was thirty years old and had been a dancer and played the piano beautifully. By the time she was forty, she was battling rheumatoid arthritis. The pain and fatigue were debilitating in the early years, and although she insists they no longer hurt, her feet and her hands are now gnarled and misshapen to such a degree that even opening a jar can be difficult. I will let her describe in her own words her relationship with yoga:
“The 1st class of yoga hooked me. It made my body “feel good”. That was in 1995 when I was 53 years old.
At 31 I began getting serious about exercise. Tried running around the block, but couldn’t. Became determined. When 37, I completed a marathon. A couple of years later, I got rheumatoid arthritis, and could do nothing except barely make it through each day. I am persistent. I continued to “try” exercising. Learned to swim laps. Slowly became stronger. Through diet and much prayer the arthritis was no longer an issue after about 10 years.
So after many yoga classes and attending conferences and workshops, I decided to get officially trained so I could teach it. I have been teaching (mostly Iyengar) yoga at a hospital owned health club since Aug. 2000. During this time, both of my hips have been replaced—one in 2006 and the other 2011. People look at the deformity in my hands, and learn that my hips are titanium, and figure if I can do yoga, that they can too!
I love teaching yoga. It continues to make such a positive impact in my life, that I want to share it with others. Try it—you’ll like it!”
So there you go. Three personal testimonials. In my case, I’ve only just begun but I’m already urging my husband to give it a go. It just does a body (and a spirit) good.
photo by Sadie Dayton
When first diagnosed with cancer, I felt as if my body had not only let me down, but actually turned on me. Some of my own DNA had gone rogue, grabbed some prime real estate in my lungs, and set up headquarters. Even when forcibly evicted, the rebel cells kept returning. Their numbers grew, and soon recruits were colonizing new neighborhoods.
Attempting to slow the spread of cancer has required unyielding vigilance. Emotionally and spiritually, I believe this has resulted in an unforeseen benefit; a chance for personal growth.
Physically, it has taken quite a toll. My body has been a battleground and I am scarred inside and out. This could potentially be distressing, as we live in a beauty and youth oriented society where great measures are taken to avoid the imperfections associated with aging and disease.
I am not afraid of getting old. I hope to hell I do. And I made peace with myself some time ago. Not only is all forgiven (the whole cancer thing), I have an abiding affection for this body of mine. We’ve been through a lot together, and somehow, some way, we both just keep on going.
Must be love.
On Monday the ice was pulling away from the shore and the woods were busy with robins. I was feeling a little bit lightheaded, and it wasn’t spring fever. The previous evening, following a delicious Sunday meal, David and I were trying to watch The Tree of Life. It is a fairly trippy film; visually stunning yet contextually perplexing. Soon after the movie started, I developed an intense headache followed by chills and nausea and after an hour had to bail.
I popped an anti-emetic, which is supposed to quell nausea (but in fact generally produces the opposite effect for me) and got into bed with a large mixing bowl at my side. Within minutes I vomited. A torrent; more than I thought humanly possible. In fact (confirmed in the a.m. by measuring the capacity of the bowl) , 64 fluid ounces. My husband David (trained as a chemist) offered the mass to volume ratio: five pounds.
Gastrointestinal issues are a rather common side effect of treatment and can pose a significant challenge for cancer patients. Obviously, dehydration and depletion of electrolytes can happen rapidly under such circumstances as can loss of calories. Shedding five pounds in a matter of seconds is not optimal.
I am a tall person at five feet ten inches and the past few years my fighting weight has been about 145. Every Monday I am weighed, and currently (even prior to the ‘incident’) I tip the scale at about 132. Not too thin, but it doesn’t leave me with much of a ‘cushion’ either.
Dosing with an oral targeted therapy is a bit of a blunt instrument, blunter still in the dose escalation phase of a clinical trial, where 700 mg of an experimental agent may be administered to both a small woman and a large man.
When I was given infusion chemotherapy (cisplatin/taxotere), the appropriate dose was individually determined by body mass. Such fine tuning is more difficult when the medium is a tablet or capsule rather than a liquid. So, once dose escalation has determined what is safe as well as therapeutic, it is invariably a standardized unit; one size fits all. If patients of disparate size take the same dose, it only follows that potency and the potential for negative side effects might be greater in the smaller individual.
On Monday afternoon I had my blood drawn locally and upon returning from a yoga class on Tuesday, found a telephone message from Dr. Shaw. My liver enzymes are no longer elevated; amazing. Although there is yet an audible wheeze when I recline, I feel that I am breathing easier. For the moment my hopes of putting GI issues behind me at a lower dose of LDK 378 (400 mg) have been dashed. Perhaps my body will adjust and episodes will be sporadic. If not, I will deal with it. This is a comparatively easy treatment and so far, effective as well.
I finished watching The Tree of Life on Tuesday. My personal review? It reminded me of a meal where the chef has tried too hard; the primary ingredients are fresh and delicious but have been obscured by an excess of culinary flourishes. Less would have been more. And yet I felt the movie concluded on a perfect note; the song of a wood thrush.
There was a beautiful article written by Eric Weiner in the travel section of the Sunday NY Times today; Where Heaven and Earth Come Closer. The opening paragraph reads:
“Travel, like life, is best understood backward but must be experienced forward, to paraphrase Kierkegaard. After decades of wandering, only now does a pattern emerge. I’m drawn to places that beguile and inspire, sedate and stir, places where, for a few blissful moments I can loosen my death grip on life, and can breathe again. It turns out these destinations have a name: thin place.”
According to the author the term a thin place may have Celtic origins; “Heaven and earth, the Celtic saying goes, are only three feet apart, but in the thin places that distance is even shorter.” It is a gloriously well written piece and although spiritual in nature, some of the ‘thin places’ described are not what you might expect. I encourage you to follow the link and read it all the way through; it is charming, lively and just might make your day.
PS: Upon reflection, I would like to add a post script. I believe that access to the ‘thin place’ is more a state of mind than a matter of place. Few of us have the means or ability to travel the world, but if we allow ourselves to simply see, feel and be; to quiet the chatter in our heads and view the world in the raw, uncluttered way that a child does, we will realize that the thin places are in fact all about us.
Posted in Uncategorized
Tagged thin places, Where Heavan and Earth Come Closer by Eric Weiner
On March 1st it was looking a whole lot like winter around here. Twelve inches of snow had turned the world white, our creek was clogged with milky slush, and the open water was closing up again. The morning of Tuesday, the 6th of March, It was 11 degrees outside.
By Wednesday, milder temperatures predicted, I went out with my camera to capture the last of winter. The creek was frozen over, but the thin sheets of ice were beginning to collapse. Not yet touched by the sun, the edge of the pond bloomed with ice crystals.
We were entering full melt-down mode. Yesterday, the temperature a balmy 65 degrees, I pulled on my rubber boots and paid another visit. Thick, sticky mud and blackened leaves showed beneath the quickly receding snow and ice on the shore.
Poking up here and there were the foot long bits of sapling the beaver had stripped of bark and then discarded; I gathered these like a bouquet. The air was heavily scented with both rot and something sweet; it smelled like spring. Bending close to the melting snow, I was met by a rush of cold air. Standing up again, a strong breeze wrapped me in warmth.
The end of one thing and the beginning of another.
On the home front, David returned from four days of travel late last night. It is great to have him home, as boy and dog wrangling solo wears me out but good these days. Several nights ago, Pete was yet hard at work on homework and I simply had to call it a night. The covers were up to my chin when I heard him call; “Mom, come here, I need you.” The fact that I was already in bed did not deter him; “It’s really important Mom!” So up I got, expecting to offer questionable assistance on homework well beyond my intellectual scope.
In fact, what he wanted was for me to measure him. There is a penciled mark on the door jamb in the kitchen dating from December and Peter wanted to see if he had grown. Good grief. However, I know it is something very much on his mind these days; he is still shorter than most of his peers just as his mom once was, so I respectfully honored his request. Sure enough, half an inch at least. All parties satisfied, I returned to bed.
And one other thing; my liver enzymes are hanging in there. Mild elevation from Monday, but that is not unexpected (*update–Alice interpreted the results for me, from a local lab with a different range of normal value, and my enzyme levels are actually lower than they were. Woohoo!). Funny, in youth you’re all about growth. For me these days, stability and lack of change can often sound as sweet.
Posted in Uncategorized
I have a newly developed and profound sense of respect for my liver. The AST/SGOT is down to 53 (normal range is 7-30) and my ALT(SGOT) is 43 (normal range is 9-32). This constitutes a mild but entirely acceptable level of inflammation/irritation; the insult and injury has been forgiven. I savored my final grapefruit on Thursday of last week, and last night I started back on LDK 378 at 400 mg.
I experienced a small amount of cramping post dose and felt enough fatigue that I took a nap after breakfast this morning, but all in all, it is an uneventful rechallenge thus far. On Thursday I will have my liver enzymes checked at the local lab; to do so is not mandated by trial protocol, but both Dr. Shaw and I will feel better not waiting until next Monday for my weekly blood draw.
Better yet, Alice (Dr. Shaw) called with some additional news this morning. My tumor response from the last chest CT scan had again been reevaluated, and it has jumped from 45% to 62.4%, which is approaching the phenomenal c 70% I experienced on crizotinib. Now that’s what I call a sweet vote of confidence, or as Mary Poppins might say, ‘just a spoonful of sugar helps the medicine go down.”
Cancer, your little vacation is over. We’re back on track.
Posted in LDK 378
Tagged ALK inhibitors, LDK 378, lung cancer, Novartis LDK 378, rechallenge
Last August our son Peter attended camp for the very first time. He experienced many of the time honored rituals of a traditional summer camp: swimming, canoeing, backpacking, songs and stories around the campfire, and (for a more modern twist) a ropes course. The campers ranged in age from 6 to 16, but they all had something in common; a parent who’d been diagnosed with cancer.
The idea for Camp Kesem was developed in 2000 by four students from Stanford University who wanted to do something positive for children with cancer. They soon realized that although there were several organizations that addressed the needs of children fighting the disease themselves, an important group of children had been overlooked; those whose lives had been impacted by a parent’s diagnosis of cancer. And so Camp Kesem (Kesem means magic in Hebrew) was created, and two missions were defined:
“To provide children whose parent has or had cancer with a free summer camp experience that gives them a chance to be kids.”
“To allow college students to channel their passion for making a difference while developing critical leadership skills for long-term social impact.”
Word of the well received first camp in 2001 spread quickly, demand among campers grew, and students at other universities became interested in starting their own chapters. In 2011, Camp Kesem was nominated and chosen as a recipient of LIVESTRONG’s Community Impact Project. The monies from this award provided support for additional staffing and seed money for 12 new campuses. In 2012, 14 new campus chapters have been added for a total of 37 camps in 22 states. For a complete list of regional Camp Kesems as well as information regarding applications, click here.
Peter was seven when I was diagnosed with lung cancer, and fourteen when he attended MIT Camp Kesem last summer. While at camp Peter received, for the first time, validation from his peers that when a parent has cancer, your own life is turned upside down as well. I asked Peter to put into his own words the Camp Kesem experience:
“Part of what makes Camp Kesem so amazing is how relaxed the atmosphere stays. We all know why we are here, and the unspoken sadness that is always there lingers, but we don’t have to talk about it. We can, but we do not have to. It is kinda just beneath the surface. Now, that sounds pretty grim, but we are so distracted and having so much fun, that all that is left is the knowledge that we all share this same little thought. Even if we aren’t necessarily talking about it, we all can and do. This means that the feeling of togetherness is magnified, until it seems like we have everything in common. We are all together, and we are all okay.”
The reach of Camp Kesem is limited only by funding. Most campers return the next summer, and the college age counselors work hard to establish and maintain relationships with individual campers that are not limited to the week of camp. I couldn’t be more impressed by this organization and have joined the National Parent Committee. Our goal is to spread the word and help make this opportunity available to even more children. So that they, like Peter, can know the solidarity that comes with sharing a common hurt:
“We are all together, and we are all okay.”
Posted in Coping
Tagged Camp Kesem, Camp Kesem MIT, camps for children who have a parent with cancer
life and breath: outliving lung cancer 