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BY GUEST BLOGGER | MAY 15, 2013
Big news for the breast cancer community: after testing positive for a BRCA mutation, Angelina Jolie underwent a prophylactic double mastectomy. After reading her Op-Ed piece in The New York Times, I can absolutely relate to Angelina Jolie as a wife and a mom, trying to do everything in her power to see her children grow up.
Someone with Angelina's visibility will bring widespread awareness and generate much needed research funds - something many of our lives depend on. By taking control of her personal cancer risk and sharing it with the world, maybe she can help us keep our own families together. (Henry is only 15 months old, which means I have to be here for at least three or four more decades!)
As much as I hate for anyone else to test positive for a BRCA mutation, I was really excited to read Angelina's letter and see the media attention surrounding it. Whether or not you agree with her politics or watch her movies, you have to applaud her for getting the conversation started.
Without a doubt, Angelina's story will inspire other women who are struggling with the decision to undergo genetic testing and possible prophylactic surgery. For those of us who have already had our surgeries, Angelina's story also impacts us in another way.
A double mastectomy left me with 16 inches of battle scars. I have lost my hair, eyelashes, eyebrows and toenails while in chemotherapy, and my fingernails are finally normal after turning black from Taxol last year. With my ego taking hits from every direction, there are days when it's easy to feel a little like the Bride of Frankenstein, especially with swimsuit season approaching. But yesterday one of the most beautiful women in the world announced that she has similar scars to mine, which means now I get to call them beauty marks!
Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.
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BY GUEST BLOGGER | MAY 9, 2013
I recently returned from Stupid Cancer's sixth annual OMG 2103 Cancer Summit for Young Adults, a nearly four-day conference for young adult cancer patients, survivors, caregivers, professionals and advocates. It's the fourth year in a row I've attended this amazing conference, which began in New York City but has been held in Las Vegas for the past two years. Before you think this is some boring oncology event, think again. Here are 10 reasons I attended the Summit and so should you:
1) People understand what you're going through. You can drop words like neutropenia, stenosis and metastasis without people asking you what they mean. No one cares if you have to zonk out in the middle of the day or can't drink. You're not the only one having a hard time losing weight, growing hair or trying to find your way again after cancer. We've all gone through a lot and can relate with each other, share what we've learned, and make the whole crazy cancer and survivorship ride a little easier for each other.
2) You won't be judged or pitied. No one cares that you have one testicle, no nipples, a bald head, a red scar snaking across your chest or walk with a cane. We all have our battle scars. And it's nice to finally say, "I have/had cancer" without someone giving you the pitiful "Awww, you're too young... my cat has cancer too" spiel.
3) You'll learn something new. With 25 breakout sessions and 50 speakers covering myriad topics for patients, survivors and caregivers, you'll arm yourself with plenty of knowledge, no matter if you're newly diagnosed or 10 years out of treatment. From sex to survivorship, environment to insurance, and fundraising to fertility, there's something for everyone. Many of the sessions are repeated so you don't miss out on vital information. The speakers are not only top healthcare professionals, but advocates, caregivers and survivors.
4) You'll be entertained. This isn't your grandfather's oncology conference. One of the biggest problems adolescent and young adult (AYA) cancer patients and survivors have is age-appropriate support. But the OMG Summit changes all of that, delivering what could have been ho-hum information with straightforwardness and humor. For instance, OMG 2013 closed out with a comedic routine by Dr. Zubin "ZDoggMD" Damania, who in his own words mashes "medicine, music and madness to educate and entertain." We also watched the First Descents documentary "Out Living It," played Re-Mission 2 at HopeLab's exhibitor booth, and watched as Stupid Cancer presented filmmaker Andrew Jenks of MTV's "World of Jenks" with its Social Impact Award. And there was plenty of time to dance.
5) You'll hear the latest on the AYA advocacy and research front. Top doctors, oncologists, healthcare pros and non-profits are on hand to talk about rapidly changing AYA advocacy and research. (I have to say, I felt pretty darn smart coming out of sessions after learning about genomics and neuropsychology.) Most sessions end with a Q&A period, allowing them to answer your burning questions on topics that run the gamut: treatments, late effects, sexuality, complementary medicine, carcinogens in the environment and more. Plenary sessions focused on genetic breakthroughs and personalized medicine, as well as progress in AYA research and AYA clinics.
6) You'll meet people working hard to make sure the AYA voice is heard. You'll never meet a group of more dedicated folks than the employees and volunteers of Stupid Cancer and all of the non-profit and advocacy groups that attend and exhibit at the conference. With young adults accounting for 72,000 new cancer diagnoses each year, it's critical that the medical community understands our needs from treatment to survivorship and beyond.
7) You'll be inspired. There are so many inspiring people contributing to the AYA cancer community, from starting non-profits to running marathons and embroidering hats to granting cancer patients and survivors dream days. If you have no clue how to get involved, you'll find plenty of ideas at the OMG Summit.
8) You'll laugh and cry. Where else can you be telling someone a cancer joke one minute and then crying over shared experiences the next? Once and a while you'll even get thrown a curveball, like a surprise marriage proposal. Plenty of tissues are provided.
9) You'll learn to get busy living again. The OMG Summit is not for people who want to stay in bed all day and cry, "Woe is me." It's about not letting cancer rule your life and giving it the bird. Sometimes you need a little help, and everyone in attendance is there to give you ideas and support to make that step.
10) You'll make friends for life. If there's anything positive that comes out of cancer, it's the amazing, supporting, fun friends you make--a rapport that lasts well beyond the walls of the OMG Summit.
If you missed OMG 2013 this year, you can still attend the OMG2013/East one-day conference in New York City on September 28. It's a bit more intimate that the annual event, but has the same, great purpose and people. Hope to see you there!
Amanda Marsh was diagnosed with Non-Hodgkin's primary diffuse large b-cell lymphoma in 2005 at the age of 22. She was treated at Stony Brook University Medical Center and is nearing eight years of remission. She's currently deputy editor for Bisnow Media and lives in Islip, Long Island.
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BY GUEST BLOGGER | MAY 6, 2013
"Why me?"
I stirred up some controversy in my last article about having a genetic predisposition for cancer. Apparently I opened a huge can of worms with the article's opening statement:
"Even the most well-adjusted cancer patient can't help but ask, 'Why me?'"
Do you ever ask the question, "Why me?" And if you do, do you think about all the good in your life and the fact you didn't deserve to get cancer? I personally think it's a natural, human thought, simply because NO ONE DESERVES TO GET CANCER.
I am not ashamed to admit it – sometimes I look at a neighbor or a friend and think, "Why me, and why not her?" It's not because I feel sorry for myself or think bad things should only happen to other people. And while I don't believe I was "chosen" to spend the majority of my life fighting a battle with cancer, I do think there is more to all of this than just a roll of the dice.
For me, asking, "Why me?" has nothing to do with religion, morality or philosophy. It's about unlocking the mystery of why people get cancer in the first place. Did I make choices to cause this? Is there something I could have done differently? What can I do to prevent this from happening again?
Cancer treatment is very literally a fight for your life, and information is one of the most powerful tools we have in that fight.
If we know why one person gets cancer while another one doesn't, we will be better prepared to fight, prevent and CURE cancer. If one in two men and one in three women will receive a cancer diagnosis in his/her lifetime, millions of lives might be saved if we all ask the simple question, "Why me?"
Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.
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BY GUEST BLOGGER | MAY 3, 2013
"Life isn't about finding yourself. Life is about creating yourself." George Bernard Shaw
When cancer happens to us it's common to feel completely out of control. We go from our "normal" lives to something we reluctantly call the "new normal." The problem is that it doesn't feel normal at all because we are changed suddenly and forever.
I got a glimpse into the emotional trauma caused by sudden, catastrophic change as a trial attorney. Almost every accident victim I spoke with was overwhelmed by it, "I was going along fine and, all of a sudden, my entire life changed completely in a split second." I didn't relate then, but years later when I heard "You have cancer," I completely got it.
In truth, we feel out of control as we rocket through the diagnostic and treatment phases of cancer because we have little control. This is the nature of the beast. For the first six and a half months of my cancer journey (from mammogram to mastectomy), I white knuckled every decision, test, doctor's appointment and surgery.
It was only after my mastectomy that things began to slow down enough for me to begin the clean-up work that follows every emotional hurricane. For me, healing required accepting change and working through issues such as body image, mortality, stress, loss, loneliness and anger. As I did so I discovered the creative power of reinventing myself.
Although I had no control over the many sudden, traumatic changes cancer dealt me, when it comes to reinventing me, I have a lot of input. I can find little ways every day to live with mindful awareness. I can practice yoga and let uplifted feet lead to an uplifted heart. I can make small, healthy changes in my diet. I can savor moments of gratitude and cherish every opportunity to give back.
The following are the six tools you need to find your creative power of reinvention:
1. Resilience: The reason we're all still here and upright is because we're resilient. Nurture your resilience on a daily basis. (Read "Six Truths I've Learned About Resilience.")
2. Grief: No one gets hit by a bus and reinvents herself the next day. Grieving is the process of coming to accept the "new normal." It's painful, but it's a vital step in reinventing yourself.
3. Gratitude: I firmly believe that gratitude is the single most important building block of reinvention. Without gratitude, there is no hope. With gratitude, anything is possible because we know how very blessed we truly already are.
4. Support: Speak up, tell your story, share! If you want to find support you have to communicate. The beauty of finding others who "get it" is the strength they give you to reinvent yourself.
5. Small Successes: Make small stabs at reinvention to achieve small successes. As you do, you get bolder and can stomach more risk. You can do it!
6. Carefully Chosen Words: Reinvention is self-inflicted change and change is scary. That's why, even when you're excited to reinvent yourself, you're also anxious. Instead of scaring yourself unnecessarily, why not change your words and thus your approach. If you break out in a sweat every time you say, "I'm going back to work," try saying, "I'm excited to find new opportunities to (fill in the blank.)"
Reinvention also takes time and, most importantly, permission. We can reinvent ourselves and take back control over the "new normal." We can take what we've learned from our struggles and use our creative power to reinvent ourselves. When we decide "WhereWeGoNow," our reinvented selves create inspired healing, wellness and live out loud joy!
Debbie Woodbury is the author and founder of WhereWeGoNow, an interactive community for cancer survivors creating inspired healing, wellness and live out loud joy. Debbie is a blogger at The Huffington Post, an inspirational speaker, a support volunteer with The Cancer Hope Network, a member of the Carol G. Simon Cancer Center Oncology Community Advisory Board, a patient educator with the Pathways Women's Cancer Teaching Project, a wife and mother, and a former very stressed out lawyer. You can also find Debbie on Twitter and Facebook.
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BY GUEST BLOGGER | APRIL 24, 2013
I should have been excited and proud. Instead, I was royally pissed off.
It was November 2012 at the annual meeting of Critical Mass: the Young Adult Cancer Alliance. I had just listened to the beautiful and formidable Suleika Jaouad, a young adult cancer survivor and blogger, tell her cancer story to nearly 200 representatives of medical, research and advocacy organizations, all assembled to improve the lives of young people affected by cancer.
So why was my overriding emotion one of frustration?
It was because the story she told--one of misdiagnosis, uncertainty, dismissal and isolation--hit way too close to home. Tweak a few details and knock it back a couple of decades, and it could have been my own story, circa 1994. I couldn't believe that, nearly 20 years later, with all the progress we had made in launching and growing the field of young adult oncology, a newly diagnosed patient would still run up hard against so many of the same obstacles and challenges.
Granted, there were a few major differences in our tales. The first was her forum: Suleika blogs for the New York Times about many issues facing young adults with cancer through the lens of her personal experience. To have a public platform at a place like the Times is, in itself, a giant leap forward in recognition and credibility for the field of young adult oncology.
Second, on a more practical front, she had frozen her eggs to preserve her fertility. When I was diagnosed, cancer-induced sterility was something that you never anticipated but were supposed to accept gratefully after the fact, an unfortunate bonus that came along with the grand prize of survival. The fact that fertility preservation was incorporated into her cancer experience is an achievement worth applauding.
The final and most obvious difference was that she was telling her story to a ballroom full of people who cared passionately about helping young people with cancer like her--healthcare professionals who were caring for young adults, researchers who were studying their needs and issues, and advocates who were developing resources and services to support them. While I had struggled to find even one other young adult patient during my year-plus of treatment, Suleika had just spoken in front of a caring and engaged community that didn't even exist as a figment of my imagination back in the day.
But Suleika's story, and her challenges in finding this community and its wealth of resources, made it starkly clear that, while much progress has been made, there is still far to go in order for newly diagnosed young adult patients to reap the benefits of that progress the instant they hear the words, "You have cancer."
When Critical Mass formed in 2006 under the auspices of the LIVESTRONG Foundation as the Young Adult Alliance, it was a bold experiment in simultaneously building a community and a new field of oncology. We were a smallish group of committed volunteer stakeholders who wanted to amplify the (slowly) growing awareness of an overlooked and misunderstood population: young people with cancer between the ages of 15 and 39 years old whose survival rates, it had just been discovered, hadn't improved since the 1970s. And for those of us who had been patients ourselves, we knew firsthand that there was a lot that required improvement. Things like rampant delays in diagnosis, no peer support, financial and disclosure challenges for those in fledgling careers, the need for fertility preservation information and financial assistance, no medical "home" between the pediatric and adult worlds and, in general, few resources addressing the unique needs of cancer patients at this life stage in a way that was both relevant and resonant.
Our solution was to bring together everyone who cared about--or who we thought should care about--young adults, and to throw them in a room together with structured collaboration to identify the issues and build a plan to address them. After that, our hope was...well, that magic would happen. That enough people would care, and would continue to care, to bring about a critical mass (pun fully intended) of interest that would sustain implementation of the plan and the continued growth and expansion of the field.
And magic DID happen. Our young adult ecosystem has continued to expand and grow. Attendance at the annual meeting has increased every year. Many new organizations that offer new services and resources have come into being. There are medical fellows being trained in young adult oncology. There is a journal and a professional society. The annual tally of journal articles with AYA references has increased from negligible to more than 5,000 per year in a just few short years.
The growth of the network has been so robust that the LIVESTRONG Foundation opted to support the spin-off of the whole program into a separate 501c3 non-profit---et voila, Critical Mass was born. And as we at Critical Mass take a hard look at where we have been in order to chart our best path forward, one thing that we know for sure is that the fundamental desire to grow the network and strengthen our mission to serve young adults with cancer has never changed.
One of the characteristics that defines young adults is impatience, and an altered perception of time. It's one reason that, when you tell a young person that they "only" have to go through, for example, a year of treatment, they will look at you like you are certifiably insane and will almost certainly tell you that a year is an unfathomable length of time to step outside of the life they are meant to be living.
Although young adulthood is fast receding in my rearview mirror, I think that characteristic is ingrained enough to explain why I can feel frustration and impatience in the face of what most would call success. But this week [April 1-7] , as we celebrate National Young Adult Cancer Awareness Week (which, I will note, also did not exist during my own cancer journey), I will allow myself to experience a measure of satisfaction before turning around and rolling up my sleeves to join again with the rest of this incredible community as we continue our work to make sure that we are there to catch the next young adult who falls through the cracks. And the next, and the next, and the next.
Heidi Schultz Adams is President and CEO of Critical Mass: the Young Adult Cancer Alliance, and a 20-year survivor of Ewing's sarcoma. Founder of Planet Cancer, the first online community for young adults with cancer, she also literally co-wrote the guidebook on how to "do" cancer in your 20s and 30s: Planet Cancer (The Frequently Bizarre but Always Informative Experiences and Thoughts of Your Fellow Natives). Heidi's blog was originally published in The Huffington Post's "Generation Why" series on young adults with cancer.
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BY GUEST BLOGGER | APRIL 23, 2013
Even the most well-adjusted cancer patient can't help but ask, "Why me?"
While there are a number of lifestyle choices that can increase one's risk of cancer, there's no real explanation why an 8-year-old has to struggle with leukemia when a 90-year-old man enjoys a long life of smoking cigars and drinking whiskey.
I didn't develop breast cancer because of the cigarettes I smoked in college. I didn't get it because of all the beer and bacon cheeseburgers I consumed in my 20s. I get to blame my cancer on something that is beyond anyone's control: I tested positive for the BRCA 2 genetic mutation. As a result, I was more likely to get cancer in my lifetime than to NOT get cancer.
Some people don't want to know if they are genetically prone to getting cancer because they think it will cast a black cloud on their future. But burying your head in the sand will not make that lump go away - it will only make you less prepared to fight when cancer rears its ugly head. Had I known that I was such a high risk for breast cancer, I could have taken measures to prevent it.
No one wants to go under the knife voluntarily, but having a bilateral mastectomy before receiving my diagnosis would have significantly reduced my chances of getting breast cancer. Instead, I will be in treatment until they find a cure. Because I didn't have a strong family history of breast cancer, I had no reason to consider getting tested for BRCA. My dad's sister had successfully completed treatment for breast cancer, but I didn't know of any other cases of breast cancer in the family until after I tested positive for the mutation.
Last week I went with CURE Editor-at-Large Kathy LaTour to see Decoding Annie Parker (click here for her movie review). While I enjoyed the film and hope it will generate awareness about BRCA genetic mutations, I would like to share a few facts with you that you will not learn from watching the movie. (DISCLAIMER: I am not a scientist, doctor or geneticist. I am a 33-year-old metastatic breast cancer survivor with a BRCA 2 genetic mutation who has spent the last four years navigating the cancer world as a patient.)
1.) Having a BRCA mutation gives a woman at least a 60 percent chance of getting breast cancer in her lifetime. It can also increase a man or woman's chance of developing several other kinds of cancer, including skin, pancreatic, ovarian, testicular, prostate, stomach and more.
2.) BRCA mutations can affect each generation earlier than the one before it. Learning you have a mutation doesn't foreshadow an event that might happen in your 50s or 60s. My aunt had breast cancer in her 40s, but I was diagnosed at 29. (Remember, the recommended age to begin mammograms is 40.)
3.) If you know your risk, you can get screened early and often, and there are preventive measures you can take. We all know that early detection is key to the best prognosis. And ladies, it would have been much more fun to get the free boob job without also getting the cancer diagnosis and the gallons of chemo - TRUST ME!
4.) Your family health history includes both parents. In terms of breast cancer, many doctors only ask about your mom's family history, but think back to middle school science: you get equal genes from mom and dad. I inherited my BRCA mutation from my dad's side of the family.
5.) Your BRCA status cannot affect your health insurance coverage. The Genetic Information Nondiscrimination Act (GINA) protects Americans against discrimination based on their genetic information when it comes to health insurance and employment.
If you have numerous relatives with breast cancer or other related cancers, talk to a genetic counselor about getting tested for hereditary genetic mutations like BRCA 1 and BRCA 2. (And don't buy one of those DIY take home tests!) Think of testing as a powerful tool that can help in your family's individual fight against cancer. You could be saving the life of your daughter, your niece, or your granddaughter, as well as your own.
Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.
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BY GUEST BLOGGER | APRIL 8, 2013
Ever heard anyone say it was a great time in their life to get cancer? No! You'll usually hear people talk about their diagnosis in reference to some other major life event. Either "My daughter was getting married," or "I had just started a new job when I found my lump."
The first time I was diagnosed with breast cancer, it was a few months after I married the love of my life. We married on Valentine's Day, 2009, and honeymooned in March. I turned 29 in April, and I was diagnosed in May. After a bilateral mastectomy and 18 weeks of chemotherapy, the year was coming to a close. After a particularly rough day, I looked at my husband and joked, "Well, 2009 kind of sucked. 2010 has GOT to be better!"
Chris responded very matter-of-factly, "I for one refuse to think of 2009 as bad - it's the year we got married." He was right then, and now he is even more right.
How many years can be defined as cancer years? 2012 can't be known as the year of my recurrence. It's the year we adopted Henry.
I refuse to let cancer define my life or the way I think about it.
When you have metastatic disease, you have to shift your way of thinking. I will always be in some form of treatment. We are not marching toward the light at the end of the tunnel like I did with the first go 'round. This is not a temporary situation or something I am going through. It's not the path I would have picked, but it is the hand that I have been dealt. And so, THIS IS MY LIFE. I can't think of it in terms of weeks between scans or times in or out of the chemo chair.
Right now, I'm not sure if I am responding or progressing on my new medication (anastrazole) since my last scan had mixed results. But I have a little guy who is learning how to walk, and we just bought and moved into a new house. Cancer is just going to have to take a backseat. I'm too busy to stress about it today. I need to buy a new shower curtain and pick out paint colors for Henry's room ... I'll worry about cancer in a few weeks when I check into the PET scan waiting room.
Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.
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BY GUEST BLOGGER | APRIL 3, 2013
"What is this lump on his neck?" asked our family physician. Just past six and a half months old, our baby, Jasan, had a few nights of intense crying followed by nausea and diarrhea. That prompted a visit to the family doctor, Richard L. Huffer. He was an amazingly thorough doctor and as he was examining Jasan, he kept going back to Jasan's left neck over and over again. He found a lima bean-sized lump on Jasan's left neck. I told him that I had given him a bath just before leaving home and didn't notice anything out of the ordinary. He guided my right index finger over the left neck and sure enough there was a lump. He told me it might be a gland that was infected and that a course of ampicillin would probably do the trick.
The next week was somewhat normal for an almost seven-month-old baby; he ate, played, got changed, slept and fought me every inch of the way when it came to taking the ampicillin! The lump didn't really shrink; in fact I thought it was getting bigger, so we were back in the doctor's office before our next appointment. Dr. Huffer had spoken to a surgeon at Loma Linda University Medical Center and knew that it was time to refer us to him. I asked him if it was serious, "like cancer serious?" He handed Jasan to the receptionist and did his very best to calm me. He told me to let the Loma Linda guys check him out; told me to call him as soon as I knew a diagnosis, gave me a hug and sent us home. I packed a couple of small bags for the two of us and then with Jasan on the floor grabbing at the dog's tail, I just sat on our bed and bawled. I just felt so helpless.
I made the necessary phone calls to family and friends and then enlisted the help of my sister-in-law, Mary, to make the trip with us the next morning. She was great at tending to her little nephew as we drove and kept my mind off the challenge of the day. My husband, Jim, would join us the next afternoon.
After the initial examination by the pediatrician, we waited to see the pediatric surgery team. By this time Jasan had a mass the size of a small egg on his left neck and was extremely agitated. Jim joined us late in the afternoon with the news that he was staying with us for a few days until we knew a little more about what we were facing.
Jasan was admitted to the hospital that evening and surgery to excise the lump was scheduled for the next morning. Paperwork had to be signed that evening and we wanted to hear any news from the surgical team when they made rounds. They told us the surgery would be about four hours. It was closer to six. They also told us that when he came out of surgery he would be hooked up to tubes, monitors, lots of bandaging on the neck and most likely would still be groggy from the anesthesia. After surgery, his crib was pushed out of the surgical elevator, he saw his daddy and all we heard was a very loud "dada dada dada" and saw no tubes, no monitors and only a small bandage on his neck. We were elated.
A frozen section during the surgery gave us a preliminary diagnosis of neuroblastoma, a sympathetic nerve cell cancer. The formal diagnosis came about a 10 days after surgery when reports were returned from various labs across the country.
Neuroblastoma. Tumor. Malignant. Radiation. The fight was just beginning!
The following days were filled with more blood tests , 24-hour urine collections, tomograms, esophagogram, radiology studies, bone marrow test (this was the worst so far...no anesthesia ... just blood-curdling screams from Jasan as we waited for him just outside the procedure room). The oncology and medical teams wanted to discuss treatment with Jim and me. We listened to the information they presented. Our decision would ultimately determine our baby's future health. We both felt so helpless. What should we do?
After two weeks we were released to go home. We had to return three days later to see the radiation therapy team. At that appointment Jasan was fitted with a clear Plexiglas mask that could be strapped to the table in the radiation chamber so that he couldn't move his head during the treatments. This was worse than hearing those blood-curdling screams during the bone marrow test.
Jasan cried and screamed and yelled "mama," "dada," and "no, no, no" through a series of 25 radiation treatments. Subsequently, he fought thyroid cancer at age 15 and at age 21 had a recurrence of thyroid cancer. Three cancers would seem more than enough for one child, yet in between were numerous scares, hospitalizations, more surgeries, illnesses, regular testing; all due to the side effects of radiation.
Did we make the best decision? We think that we did. The oncology team told us we could do nothing and take our chances of Jasan living a few more months or we could choose radiation and that would give him at least 18 more months on this earth and possibly side effects through the years.
Jasan has surpassed those 18 months by three decades plus and now serves as a cancer advocate helping others meet their own challenges. We know it hasn't been easy for him or for us, but we were always by his side and that will never change.
Note: Jasan's neuroblastoma was diagnosed in 1976. We lived in a small town of about 25,000 people. There were no support groups, no major medical centers and we didn't know anyone that had a child with cancer. We traveled an hour and 15 minutes each way from Indio, Calif. to Loma Linda University Medical Center in Loma Linda, Calif. for each appointment, treatment and hospitalization. Jasan's case was the 26th neuroblastoma in the U.S. It was the first tumor recorded on the neck, most are found in the stomach. Thank you, Dr. Huffer and LLUMC for saving Jasan's life!
Carolyn Zimmerman is the mom/caregiver of a three-time cancer survivor. Her experience covers caring for a six-month-old baby diagnosed with neuroblastoma, a 15 year old diagnosed with mixed papillary and follicular thyroid cancer, and a 21 year old diagnosed with recurrence of the thyroid cancer. She says the treatments, surgeries, scares, support and dealing with the medical world have been a major part of her son's life and directly affected her role as mom/caregiver.
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BY GUEST BLOGGER | MARCH 29, 2013
When you think about the major tests you've taken in your life, which ones come to mind? Is it your driver's license test, your ACT or SAT tests or a big test you took in high school or college? Or is it a test of the medical variety that comes to mind such as a biopsy, bone scan or MRI?
One test that profoundly impacted my life recently was the BRCA gene analysis test. Things changed pretty dramatically for me the day I learned the results of that one. I remember the day well. There are so darn many of "those days" to remember, like the day I heard the words you have cancer. The day I found out I was BRCA2-positive was another one of those "stand-out" days.
After my biopsy had confirmed earlier that I did indeed have breast cancer, the next big piece of my particular cancer puzzle to figure out was my BRCA status. Since my mother had already tested positive for the BRCA2 gene mutation, the chances were 50/50 that I would as well. I was in the "thinking about getting tested" stage when cancer reared its ugly head speeding up the process for me.
Cancer doesn't allow you to think things over for too long.
I had to wait about two weeks for the test results to come back and, of course, my oncologist was out of town during the week of its expected arrival. Feeling more than a bit impatient a day or two after that expected arrival date, I decided to call the clinic and unsuccessfully attempted to talk the nurse into giving me the results over the phone. She emphatically told me the report hadn't arrived yet and I would have to wait until my scheduled appointment on Tuesday; that was Friday. I didn't believe her for a minute. I knew the report was in and that she was just following proper protocol and I told her so, but she stuck to her guns. More waiting.
After hanging up the phone that day, I realized on top of everything else, I had surely sounded cynical, desperate and probably more than a little annoying, but I didn't care. I felt like I was quite literally fighting for my life and decisions yet to be made were dependent on those test results.
On the following pleasant Tuesday in May 2010, hubby and I waited calmly in the exam room wondering about the next bomb shell. My oncologist slowly entered the room carrying the purple folder. If you've had the test, you know about the purple folder; at least it wasn't pink.
Immediately I knew from his demeanor what the results were. Actually, I knew even before he entered the room. Some things you just know. Call it woman's intuition, or whatever else you choose, I somehow knew what the results would be.
My hubby, my oncologist and I calmly looked at the white sticker that had been attached to my purple folder. There they were. The same words I had seen on my mother's folder: positive for deleterious mutation. The same dreaded words in the same dark bold-faced black letters as if to further emphasize my doom.
Positive for Deleterious Mutation. I read the words over and over, and all I could think of was that they sounded more like words to describe some serious mental illness. I hope that doesn't sound offensive to anyone who has suffered from mental illness. If they do, I apologize.
We weren't surprised, or at least hubby and I were not. We were becoming more accustomed to hearing bad news. However seeing the words written down and then stated out loud, somehow amplified their power and significance.
The results were in and they were conclusive; pieces of my DNA were no longer merely "suspicious."
My genes were "tainted."
It was time to fine-tune our plan.
In my case that plan included undergoing a bilateral mastectomy. In addition, since a BRCA2+ status also elevates a woman's chance of developing ovarian cancer, a bilateral salpingo oophorectomy was recommended for me. Later, after finishing up chemotherapy and most of reconstruction, I chose to undergo that surgery as well.
I could then say I had done all that I could.
Nancy Stordahl blogs about her cancer diagnosis and more at NancysPoint.com and is the author of the ebook Getting Past the Fear: A guide to help you mentally prepare for chemotherapy.
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BY GUEST BLOGGER | MARCH 27, 2013
The first thing he asked should have tipped me off.
"Did you come alone?"
It was a sunny morning in July almost five years ago. The next four words my hematologist said will forever be embedded in my memory: You have multiple myeloma.
Like so many before me, the moment of my diagnosis was the first time I'd ever heard the word. As a teacher, I did what I often encouraged my students to do when they didn't recognize a word – I asked him to spell it out for me. When I told my family, they immediately thought I had been diagnosed with skin cancer.
But myeloma is not melanoma. Myeloma (also multiple myeloma) is a blood cancer. At the time, the only blood cancers I had been aware of were leukemia and lymphoma. The only blood cancer organization I'd ever heard of was the Leukemia and Lymphoma Society. Using deductive reasoning, I figured that since the word "myeloma" wasn't in the organization's name, then myeloma couldn't be a cancer. Some people call it wishful thinking. Others might call it denial.
Prior to my diagnosis, I'd been suffering from excruciating pain. I'd been having trouble with fatigue, and often felt myself forgetting things – like whether or not I recorded my students' grades before handing back their assignments.
My orthopedic doctor treated me with pain medication and physical therapy for two years before discovering that compression fractures in my spine were the source of my pain. I was scheduled for surgery to have the fractures repaired, but the surgeon required medical clearance from my primary care physician, who in turn referred me to a hematologist when my blood work revealed I had severe anemia.
That's how I ended up sitting across from a hematologist on a hot summer day, learning about my cancer.
Knowing what I know now about myeloma, it's frightening to remember the roundabout road I traveled to get my diagnosis. See, anemia and bone pain are two of the four common symptoms of myeloma. The other two are renal insufficiency and high calcium levels in the blood (which can cause confusion). If I had been aware of these symptoms and their connection to myeloma, I might have questioned why two years of physical therapy and pain medication were not working.
This is why I believe it is so important to promote myeloma awareness. I'm grateful that the International Myeloma Foundation has designated March as Myeloma Awareness Month and initiated their "Tell One Person" campaign to help spread life-saving information about a disease that, despite its being the second most common blood cancer, often goes untreated for years because of a lack of awareness.
This year, an estimated 22,350 adults in the United States will learn about myeloma when they receive their diagnosis. To help them know they are not alone, I have been doing my part by using social media to reach out to the myeloma community. I am @MyelomaTeacher on Twitter, where I post facts about myeloma symptoms, treatment and other information that benefits myeloma patients and their caregivers.
I keep going back to the realization that if I had known about the CRAB criteria (C-calcium, R-renal insufficiency, A-anemia, and B-bone involvement) I would have saved myself two years of debilitating pain and confusion.
If I can help one person avoid making the same mistake I did, and recognize their symptoms early on, it will make all the difference in the world.
Cynthia Chmielewski, a retired educator, is a patient advocate and mentor, a patient services volunteer, and a "life-long learner" who lives in New Jersey.
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