Time on Fire gives us an in-depth look at the good, bad and the ugly of cancer care and its aftermath.
I don’t often do book reviews on here, mostly because I get flooded by requests from them. But a pitch from Evan Handler’s publicist about his book, Time on Fire: My Comedy of Terrors, caught my eye. Yes, I admit, I’m a huge Sex and the City fan and loved Handler’s character Harry. So I was a bit star-struck.
Handler was diagnosed at the young age of 24 with leukemia, just when his Broadway and film acting career was taking off. He had a full head of hair then before treatments killed his hair follicles. To be honest, I wanted to stop reading it after the first few chapters. Handler came across to me as a big complainer and a bit dramatic at first. Take this observation about his first chemo treatment as a nurse was trying to distract him before sticking him with a needle: “I thought this must be how animals feel, moments before they are expertly slaughtered, never having quite enough time to figure out what has been done to him.”
“Please!” I thought. “What a lame analogy! I’ve been stuck hundreds of times and love my chemo nurses. It’s no big deal; they are just trying to do their job!”
As I continued reading, I could see where he adopted that attitude. He describes the horrific care and indifference he experienced at top-rated Memorial Sloan Kettering Cancer Center in NYC, where he was not only discouraged having any active participation in his care; he was disparaged for doing so. As a reference point, this all took place in the mid-80s. Hopefully things have changed since then, but I doubt this book will hold a place on Sloan Kettering’s gift shop shelves.
As I read on, I actually began seeing how Handler was way ahead of his time, taking his arrogant doctors to task, asking plenty of questions, and advocating for the best care from his health care team. Like me, he was doing everything in his power to get well. He sought second opinions and after much research, went to Johns Hopkins for his bone marrow transplant. I could identify his quest for body-mind-spirit solutions, absorbing the teachings of pioneers Carl Simonton and Bernie Siegel. His early enthusiasm gave way to skepticism, however, as he saw fellow patients die from the disease and experienced his continuing decline.
There’s humor, too. Like his description of a 300-pound, sweaty phlebotomist who put everything in his mouth, much to the horror of the immune-compromised Handler. And there was the Evening of Elegance, a fancy meal which rewarded patients for making it through the bone marrow transplant and being discharged a month or two afterwards. He had a setback right before his promised evening and, in his delirium, screamed at anyone who would hear. “F*&^ you! I’m not going anywhere until I get my Evening of Elegance. I’m not going anywhere until I get my f#@!ing filet mignon and my G-ddamned parfait sundae!!”
After a harrowing five-year medical journey, Handler did beat the odds. But it is not the fairy tale ending you’d expect. He and his long-suffering girlfriend break up, not withstanding the toll the experience had on their relationship. Handler had trouble at first adjusting to post-cancer life. And he was sometimes rejected for parts because of the risk associated with hiring someone recently dealing with a dire cancer diagnosis. And then, there’s the hair that never came back.
But toward the end of the book, I could relate to him most. Handler describes how he was surprised how he went back to many of his old ways after he got well, but some things had changed dramatically. He speaks of being a miser with his time, not wanting to give up his days to things that don’t mean something to him personally. And he relates the loss of innocence of having to look death in the face at such a young age and seeing friends pass away. While he does not always feel it, being reminded of his brush with death helps him appreciate the exhilaration of being alive.
As someone with metastatic cancer, I’m constantly reminded of my mortality and that of my friends. It really sucks, but I sure am happy to be alive. I’m also happy I read this book as it made me examine my own attitudes toward my cancer experience. I’d recommend this book, especially to readers affected by leukemia or just want to get the scoop on Harry from Sex in the City.
Me and Ann Fonfa at her annual Annie Appleseed conference. Ann, a metastatic breast cancer survivor, started her organization to educate survivors on integrative and alternative cancer treatments. Ann doesn't earn a salary; just satisfaction from helping others.
“There’s tremendous power when you shift your perspective from a place of suffering to one of service. If you feel that you’ve ever been a victim in your life, it’s time to change that belief right now. When you look at all of your past hurts, big or small, as an opportunity to serve others, you’ll become a powerful creator.” – Michael J. Chase
I saw this quote on Facebook recently, and it struck me how true this has been for me even before I had cancer. My mom gave me one piece of good advice. It was when I was a teen and felt depressed. She suggested I go out and volunteer to get outside of myself and help others. I started volunteering at the local children’s hospital and have continued finding ways to serve to this day. Since being diagnosed in 2002, and especially since my stage IV diagnosis, my passion is serving other breast cancer survivors.
One thing I’ve learned is that you get back ten-fold what you give. It’s an endless circle. I receive; I give, and so on. I have been helped by so many people during this journey and have had the honor and privilege of helping others. I feel so blessed and connected. Yesterday one of my friends, who is also a cancer encourager and helper, asked me if I could talk with a women who was newly diagnosed with metastatic breast cancer. I immediately said yes.
As I spoke with this woman, I felt the spark of connection. She sounded so sad and stressed, and rightly so. Her husband left her right before her diagnosis, and she was left alone and with financial difficulties to boot. All I did was listen, share my experience and offer some resources and reason for hope. At the end of the conversation, she told me she felt better and was glad she spoke with me. That helped to dissipate some self-pity I was feeling that day over a family situation.
I remember when I was first diagnosed, how important it was to talk to someone who was further down the road I was and doing well. It meant everything to me. Now I can be that person to someone else. I believe that is what God put us on this earth to do, and it somehow brings some meaning to this disease.
Almost all the people featured in From Incurable to Incredible either started a cancer support organization or volunteer/fundraise for existing ones. I was so inspired by one of them, Jonny Imerman, that I became a volunteer mentor for his organization Imerman Angels. I see it in other circles other than cancer – when people face a tragedy and use it as an opportunity to help others.
I could argue that this sense of purpose that can actually keep people alive when all else fails. A Facebook friend, Shay Sharp, just posted a message from a woman who was getting ready to go into hospice, but is alive and well a year later. The woman’s husband said that she was so busy volunteering for Shay’s cancer organization, that she had no time to be sick! It kind of reminds me of a story Bernie Siegel, MD, tells about a gardener who Bernie thought would not make it but came in for a check-up years later. The gardener told him he was so busy “making the world beautiful,” that he had no time for illness.
The beauty of this is that anyone can benefit from the act of giving. It doesn’t have to take money or energy; it can be as simple as reaching out to someone and offering encouragement. By doing this, you can free yourself from the “victim mode” and become a “powerful creator.”
Jumping for joy!
Anyone with metastatic cancer and their loved ones understand the anxiety awaiting and getting scan results. Every three or four months, I lie still for 20 minutes in a tube, resisting the urge to itch, then wait a couple of days to pick up the results. Many people wait until their doctor’s appointment, but not me! It’s one way I can lesson my stress and gain power back in this often powerless journey. The results of the scan will determine if treatment is working or if I have to plunge into the world of trying to decide what to try next and worrying I’m running out of options.
I had a feeling of dread going into this scan as some dear friends of mine have had bad results. Not only was I heartbroken for them; I was scared for myself. I started noticing pains that weren’t there. I started going down the path of thinking that maybe I’m just resistant to all treatments. But my 50th birthday was this past weekend and was delightfully distracted by the joy of making it to the mid-century mark and celebrating appropriately (or inappropriately if you count the two margaritas!) But Monday, first thing in the morning, I was back to the tube.
So today, I waited until my daughter came home to go pick up my results, thinking she might be a good luck charm. As luck would have it, she didn’t want to go with me. Brushing superstition aside, I went alone.
I want you to be the first to know (besides my husband and daughter) that I just picked up my scan results. The Affinitor and Aromasin combination is working! Actually the results are quite remarkable! Every lesion has decreased in both size and SUV uptake (how they measure treatment response on a PET scan).
I was at first worried because it was two pages instead of one, but there was a lot to report. Probably the biggest change is in my right armpit, where my recurrence was first spotted. You could actually feel the lump, but my massage therapist told me last appointment she couldn’t feel anything. On my previous scan, it was 2.2 x 2.7 cm with an SUV4.5. It is now only 12 x 14 mm and an SUV of zero!!! Some spots on my last scan have literally disappeared or cut in half.
With all the progressions I’ve been through, I’m cautiously optimistic. I don’t know how long this will work, but I’m thrilled that it is and relieved to have a break from switching and deciding on treatments. This means for four months I can live my life as it has been on a drug regimen that has given me very few side effects. It’s a reprieve, and I’m so grateful. I was crying tears of joy on the way home, thanking God for this gift.
Thank you for your prayers and support! It means the world to me and I believe that it has played a big role in my healing. Hope you’re having a happy May Day! I sure am!
Kristie and her family circa 2011
“It may pop back up from time to time but we’ll just deal with that when it comes and kick it back hard each time! And who knows what the future of medicine will bring? I’m hopeful with all the research and money being spent that the cure will be found in my lifetime. ”
These were the first optimistic words uttered by Kristie McFarling on her CaringBridge page after her first chemo treatment in December 2010. Kristie was just 31 years old when she was diagnosed with stage IV breast cancer right off the bat. At the time, cancer had spread to her lymph nodes, liver and bones. Her daughter Ava had just turned one and her son Thomas was four. The adventurous young woman, who has traveled to Costa Rico and Australia, was in for the trip of her life.
The first oncologist she saw was “all doom and gloom,” so she switched oncologists. She was pragmatic, as Kristie describes her. “She told me that I may read the life expectancy is 2 1/2 years, but I’m young and healthy, so feel free to exceed everyone’s expectations.”
We went here - Hidden Beach in Fajardo, Puerto Rico. I returned during a guided meditation.
I’m in an interesting space right now – the blissful stage between scans. Right now I can almost forget I have cancer. I’m taking Affinitor and Aromasin, two oral medications to target the estrogen driving cancer. Sure I go into my oncolgist every few weeks for a checkup and get blood drawn, but I don’t have to deal with infusions. I am fortunate that I’m not experiencing many side effects, with the exception of a bloody nose and occassional acid refux. I don’t want to think about cancer; I just want to live my life. Those of you with metastatic cancer can probably relate.
It is still in the back of my mind, however, and I’ve been driven to things to distract me from it. I have added an obsession to the games Words and Scramble with Friends to my Facebook habit. I tell myself I’m doing this to sharpen my chemo brain. I watch TV, I sometime compulsively eat … anything to numb myself from the fact that my life does not appear what it seems to be. I know in a couple of weeks, I’ll have another scan that will either show that what I’m doing is working or that it isn’t, forcing me into the medical muddle of making a decision what comes next. I simply don’t want to think about it.
This was obvious to me at a recent visit to my in-laws. A well-meaning and sweet individual asked how I was doing. Instead of saying, “Fine, how are you?” as I should have done, I gave her a medical update. And then she asked “where is your cancer now?” Ugh! I see the pained looks of people surrounding me. I don’t know if it’s out of sympathy or if they don’t want to think about it either.
Pink Fund founder Molly MacDonald and James Denton. Lucky girl!!
A few years back, I had the pleasure and privilege of meeting Molly MacDonald, a breast cancer survivor, advocate and amazing fundraiser. I learned about her organization, The Pink Fund, which provides short-term financial aid to people during active breast cancer treatment – giving them time to fight, heal and get back on their feet. At the time, the program was only available in Michigan. Molly asked me to blog for the organization and told me she had big things in store – expanding the program nationwide. I figured it would take a really long time to jump from serving one state to the entire country, but little did I know that in less than two years, Molly and her team reached their goal.
In her relentless search for funds so breast cancer patients can focus on healing; not bills, Molly found a generous partner: The Ford Motor Company. Ford Warriors in Pink®, the Ford Motor Company program that raises awareness and funds in the fight against breast cancer, has created a limited-edition T-shirt inspired by film and
television actor and supporter in the fight against breast cancer James Denton. For every shirt sold, 100 percent of net proceeds go directly to the Pink Fund, providing real help now.
Imagine my surprise upon reading my beloved People Magazine and seeing a full-page ad with the hunky actor of Desperate Housewives fame sporting the T-shirt and stating his support of this great organization!
“The last thing someone with breast cancer needs to worry about is how they are going to pay their bills,” says Denton. “With the muscle of Ford Warriors in Pink behind the Pink Fund, we think we can really accomplish something for people.”
The dark gray, V-neck T-shirt inspired by Denton showcases symbols of a warrior and illustrates the fight that it takes to battle the disease. Available now, exclusively at www.fordcares.com, you can buy this limited-edition T-shirt to support the Pink Fund. Newly added as a charity partner to Ford Warriors in Pink.
Would you like a chance to win a free T-shirt? I’ll pick one lucky reader who comments here. Tell us a little about yourself and why you think the Pink Fund is important to breast cancer patients.
For more information about The Pink Fund, visit www.thepinkfund.org.
My daughter on the beach in Fajardo
My friend Vanessa, who at the tender young age of 31, is living life to the fullest and spreading the message of hope with her Live Sincerely Project, despite being in hospice for stage IV breast cancer that has metastatized to her brain. She is an inspiration to many people and was on my mind as our family enjoyed a dream vacation last week to Puerto Rico.
You see, I turn 50 in a few weeks and decided I wanted to celebrate it in a big way with the two people I love most — my 14-year-old daughter, Chrissy, and husband Mike. Turning a half century is a notable milestone for most people, but for me and others facing the same diagnosis, it is nothing short of a miracle. When I was diagnosed in Feb. 2008, I had a 15 percent chance of making it five years. What better reason to do it up big?
I’ve been talking about turning 50 like a little kid. I’m 49 1/2, I’d think. Now I can say I’m almost 50. I’m thrilled to turn the half century mark. I know so many young women with breast cancer who didn’t get that privilege. Vanessa, sadly, won’t even make it to 40. Part of Vanessa’s Live Sincerely Pledge reads:
Some exciting developments in cancer research!
Some days we just need a hope boost! For me, nothing is more hopeful than hearing that we’re getting closer to finding new, lifesaving ways to defeat cancer. Liam Fisher from Cancer Research UK (CRUK) contacted me with just that. Here’s what is on the organization’s radar screen regarding the most promising developments:
Curing a human body of cancer can be compared to trying to remove weeds from a garden. Yes, it’s possible to get rid of most of the cancer cells under the knife, with chemicals or radiation; but it’s also indeed hard to get rid of every single last one of them. Like weeds, only a small part of the growth need survive to start causing problems again later on down the line.
Research in the field is pressing ahead at a fantastic rate, and potential new methods of treatment are in the pipeline which may prove capable of inhibiting and destroying cancer cells with greater precision than current methods, resulting in a better quality of life for the patient. Below, we’ll take a look at some of the promising research taking place.
’Turbocharged’ cancer cells
Recent reports reveal that Japanese scientists have been using stem cell research to clone and produce a whole bodily army of a unique type of white blood cell. The white blood cells in question are known as cytotoxic T lymphocytes (CTLs). Why CTLs are so important is that they are able to ‘search and destroy’ tumour cells by recognising unique markers on the tumour’s surface. That means that only cancer cells will be targeted, reducing the amount of damage caused by therapy to healthy cells. However, research is still in the early days and CTLs will need to be ‘reprogrammed’ to be fully effective. With this research, the future of immunotherapy cancer treatments looks very positive.
Genome-informed cancer treatments
DNA analysis is affecting the ways that the industry treats cancer. Doctors are now able to take a slice of a patient’s tumour from a biopsy and send it to the lab to be analysed for molecular aberrations. The benefit of this is that after it has been analysed, the doctor will be able to target the cancer with a specific drug. At the moment, patients will experience a year of high quality life; but this is just the beginning. What the future holds is that genome-informed cancer treatments will supply a unique combination of drugs which are tailored to a patient’s specific DNA. The drugs will not only target specific parts of a tumour, but will eradicate general multiplying cells.
The incredible force of cancer cannot drown out my spirit.
I think God wanted me to watch Oprah’s Super Soul Sunday episode. I have the series taped on my DVR and I saw that Nate Burkus was the guest. “Why is she talking about interior design on this show?” I thought. I selected it, trying to delete it and inadvertently pressed play instead. They were talking about how he survived the tsunami in 2004, but lost his partner in it. I recently saw The Impossible about it, so I was intrigued.
So many things he said resonated with me. He talked about when the worse thing happens, you release fears you had before and get things done. He talked about moving on and living life to the fullest instead of staying in grief about the past. And he says his experience was a gift that has changed who he is and how he lives his life. He realizes that people are the most important part of his life. I think Nate is beautiful inside and out and I saw the light shining from his gorgeous eyes as he spoke. (Yes, I think I have a new celebrity crush! )
For me, cancer has been my tsunami. Like Nate, I have lost people I loved to this disaster, but it has made me a different person. I have done so many things and have connected with so many people … I wouldn’t have done this before. I realize the sacredness of life and how each individual is a precious being.
I’m noticing an interesting dichotomy since I returned from the C4YW in Seattle. (For a full update, visit my blog HERE). I’m facing the prospect of death while living the hell out of life.
Today is International Women’s Day, a great time to remind everyone to take care of their “girls.” A recent study carried out by the Mayo Clinic showed that, in the year following a federal task force’s (U.S. Preventative Services Task Force) revised breast screening recommendations, the number of women in their 40s undergoing mammograms declined slightly — by approximately 6 percent — a change researchers call modest but still significant. I recently interviewed Dr. Stacey Vitello, a fellowship-trained radiologist with Montclair Breast Center, in Montclair, N.J., about this trend. Dr. Vitiello is a leading voice on breast density and blogs about breast health at her blog, The Breast Diaries, and TheAtlantic.com.
Many young women like me found their cancer through a breast self exam.
Why do you think the recommendations are a setback?
The United States Preventive Services Task Force (USPSTF), a panel appointed during the George W. Bush Administration and supported by the federal Agency for Healthcare Research and Quality, issued recommendations regarding breast cancer screening in 2009. This panel consisted of physicians in primary care (internists, pediatricians, Ob/Gyns), nurses, epidemiologists, biostatisticians, and public policy officials. Not one single breast cancer expert (breast surgeon, oncologist, radiologist, radiation oncologist) was included at the table.
The panel recommended screening mammograms every other year, beginning at age 50. This was a significant departure from the 2002 USPSTF recommendations, which called for annual screening commencing at age 40. Incredibly, the panel also recommended that women should not be taught or encouraged to do breast self-examination, and that physicians should not perform clinical breast exams on their patients to check for cancer.
To support its proclamations, the panel used a computer model to create new, non-peer-reviewed data extrapolated from previously published studies on mammography screening. Some of these papers were decades old. The USPSTF used the lowest estimate of mortality reduction attributed to mammography (15%) among the various numbers that exist in the literature (as high as 54%). Even with their selective use of a low mortality reduction figure to create their new numbers, the USPSTF’s own “data” confirmed that significantly more women would survive if mammography screening began at age 40.
But they ignored their own data, and they claimed that the supposed “harms” of screening (discomfort, anxiety of additional testing, and the risk of diagnosing cancers that wouldn’t necessarily kill the woman – though no one can tell us which cancers those are) outweigh the benefit of lives being saved. This was clearly not an objective, impartial scientific judgment; this was a value judgment, made with the over-arching goal of creating cost-saving public-policy recommendations for a broken healthcare system.