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Voices of AYAO

2011; Mary Ann Liebert, Inc.; Volume: 1; Issue: 3 Linguagem: Inglês

10.1089/jayao.2012.1501

2156-535X

Journal of Adolescent and Young Adult OncologyVol. 1, No. 3 Voices of AYAOFree AccessPublished Online:20 Mar 2012https://doi.org/10.1089/jayao.2012.1501AboutSectionsPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookXLinked InRedditEmail Voices of AYAOThe “Voices of AYAO” feature in each issue ofJAYAOwill have stories from real patients and survivors, in their own words. It is our hope that these illustrate the personal journeys and experiences of AYAs living through and surviving with cancer and its effects.—EditorsDave's StoryI'm very fond of the term “You can't script this.” In 1991, I started working for my wife's family business—which sells, among other items, ostomy supplies. We grew the business until eventually we were acquired by a bigger company. At age 29, a lot was happening at once: first child, new business owners, first house…lots of stress.So when I started having cramps and bleeding, it didn't occur to me that it could be cancer, even with my family history. My grandfather had colon cancer, ultimately having a colostomy but living well into his eighties. My father had colon cancer in his forties, but had obvious symptoms such as losing weight and having a very ashen look to him, and he's still alive in his seventies. At 6 feet tall, I was still a solid 200 pounds, worked more than a full schedule, and was playing soccer. I visited my primary physician, who misdiagnosed me even though the family history was listed on my chart. He didn't do a rectal exam and recommended that I take some over-the-counter stuff to control the ulcer-like symptoms.A few months later when symptoms hadn't subsided, I went to a specialist who told me the news—colon cancer at 29. We found a highly recommended GI doctor who confirmed the results, and I was scheduled for surgery. Laparoscopy wasn't around then, so the surgery was pretty intense. I woke with a pretty sizable scar and a buckled-over pain in my abdominal area. After five days I was released, but then had six months of chemotherapy as the cancer had spread to at least one of my lymph nodes. My chemo was weekly on a Friday. I would take off from work, get hooked up to the IV, and spend the next day and a half incapacitated. On Sunday morning, I would drag myself out of bed and go play soccer. I felt like I was licking sand. For the first time in my life, I forced myself to eat a ton of mango sorbet and haven't eaten it since.My wife and I debated having more children, knowing the potential for our children to inherit my family propensity for colon cancer. We ultimately agreed to have more kids. Four years after Dubin #1 came Dubin #2. By now, I had left the old family business and started an Internet venture, which briefly relocated the family to Florida. The Internet sector tanked around 2000, and we restarted the family medical supply business in New Jersey, taking back our previous clients. Once I was five years cancer-free at age 35, I was allowed to start donating blood once again. It was something I previously did with regularity. I did some radio work in my spare time and started coaching my oldest son in soccer.Cancer was becoming a bad memory for me, until my older brother was diagnosed at age 37 (he is five years older than me). But my annual colonoscopies were clear, and somewhat enjoyable as I did my own narration. (My GI doc thinks I'm nuts. I am.) Four years after Dubin #2 came Dubin #3. We moved into our third house in the very same town. I was now coaching both of my oldest kids in soccer. I was still getting 'scoped and donating blood.On May 1, 2007, I went to donate blood, but my hemoglobin level was so low they were practically ready to give me a transfusion. Even though it had been less than a year since my last scope, they recommended I contact my GI doctor right away. Since I have my GI doc on speed dial, I reached him quickly and had a scope done. It confirmed another tumor, which freaked out everyone since it appeared in less than a year, didn't start as a polyp, and became cancerous so quickly. Surgery was scheduled for just after Memorial Day, and I was put on a heavy iron regimen. Numerous friends traveled across the Hudson River to donate blood on my behalf at the hospital. I decided to hold my first (hopefully annual) “Dave's not Dead Yet” BBQ on Memorial Day. I had two reasons for doing so—first and foremost, there were a lot of people with a lot of questions, and I didn't want rumors and confusion to dictate the conversation. Also, I wanted to enjoy my last meal as someone with more colon. It was a good day. Two days later, I had surgery once again, this time laparoscopically, and as hoped and expected it was cut and dry, so to speak. No blood transfusion was needed after all, there was minimal scarring or pain, and I didn't need any chemo afterwards.After tumor #2, I started a blog, www.AliveandKickn.com. It's my therapy. I write about my life as a survivor. When I see things I can't fathom, I try to put it into words, to put things into perspective. I look at bigger issues such as the environment, food, government, and try to filter out the nonsense and find some common sense. It's not easy. So many of my friends, relatives, and business associates get caught up in the minutia. I can't. I don't know how many people follow the blog, but I update as often as I can. I had genetic testing done and (surprisingly) was found to be at risk for colon cancer. I have hereditary nonpolyposis colorectal cancer (HNPCC), or Lynch syndrome, which is prevalent in less than 5% of all colon cancer patients. Lucky me. Some people inherit money.I decided to start seeing an oncologist. I don't really like having an oncologist, but staying vertical is important, so I made the commitment. He recommended a battery of tests that made me glow in the dark. Not wasting any time, in August 2008 I was accepted into a leadership development program in New Jersey. In November 2008, I was also elected to my local city council (my wife is still waiting for the recount).In September 2008, after having my annual chest, pelvis, and abdomen scans, spots were found on my liver, which isn't a good thing. So an MRI was taken to focus on the liver. As I was coaching a soccer practice, I received a phone call from my oncologist. He started by saying “I have good news and bad news.” The good news was that the liver was in fact clear, but a small tumor was found on my right kidney.An MRI was done, focusing on the kidney, and the decision was made to have it removed in February 2009. It could stay there for years without getting worse, but since I was theoretically young at 42, a partial nephrectomy was performed once again at the same hospital. Although my original surgeon did not do the nephrectomy, he did scrub in (third surgery was free), and got past the scar tissue quickly so that the kidney doc could get in and out. Once again, I had minimal pain, minimal scarring, and no chemo. Now 10% of my right kidney is gone, but so far, no issues. I was told it's a primary tumor and unrelated to the previous colon cancers, but it is related to the HNPCC. I guess I should be happy. I got a gift basket from the hospital's CEO. I think I get a plaque next time. Maybe a mug.2010 was the first year in several with no surgeries. All the scans and scopes were clear. I had my first mammogram. I think the tech had fun with me as she put some weird clips on my nipples. I pretended to be Blaze Starr. My oncologist has brought up the idea of having a colostomy. I'm not ready to become one of my own customers yet. Ironically, if I did need colostomy supplies, I couldn't get paid by my own insurance company, as my company isn't on their formulary. Like I said, you can't script this.My oldest son is now 16 years old. He has seen me in the hospital too often and understands too much. My middle child is now 12 and understands some, while the youngest is now 8 and doesn't really understand yet. I still play soccer when I can. I coach all three boys. My three-year term on Council is over. I'm on the board of my local volunteer and blood centers. I still have the family business, and I still have trouble getting on insurance formularies. I'm turning AliveandKickn into a foundation promoting early detection of colon cancer. I've launched a mail-order ostomy business. If I can use my business to help those out there, as well as support the grassroots movements out there, it's a win-win scenario. I've also re-launched my vocal career. You may hear my pipes on the air someday soon.There's not enough time in the day to get done what I want to accomplish. 2011 marked the 5th anniversary of the “Dave's not Dead Yet” BBQ. My wife wants to change the name. She worries about me. I don't blame her.As a parent, I fully understand the angst my father feels knowing that his sons have his cancer. The math is against my boys as well. I worry that one day I won't beat it. I want to be remembered, as my blog says, as resilient—as alive and kicking.Dave Dubin is now 44 years old and has beaten cancer three times.Ange's StoryGrowing up, I was always made to feel very clever. One of my earliest memories is being told I could achieve anything. This innocent exaggeration on the part of my parents was, to my young mind, a rich source of fertilizer for what turned out to be a robust ego. Beginning school two years earlier than was usual only made matters worse.I went to school in a small town, three hours west of Sydney, Australia. I coasted through school with almost no effort. Socially, I was anxious and at times considered rather odd, although I always had friends. I was a gregarious sort, who played team sports and planned to be a human rights lawyer.Once puberty struck, I developed a mad urge for anything I'd been reliably informed was bad for my health. Understandably, my parents were devastated at this disturbing change in their eldest child, and the next few years were characterized by all-out warfare.Then at 15 years and 7 months, I was diagnosed with acute lymphoblastic leukemia. By this point I can now admit I had grown into a self-important, moody sneak with what must have been an irritatingly high opinion of my own intelligence.As it's widely acknowledged, no one expects cancer. Still, I took it well, at least to begin with. I was told I would need two years of chemotherapy, eight months of which would be intense. The remaining 16 months I would undergo what was rather euphemistically referred to as ‘maintenance therapy.’I took the news quite well for two reasons that I can gather, the first being that there was an end in sight. Cancer would, as I understood it, come and go. Blame my teenage sensibility, but despite being told there was a 1-in-5 chance I could die, it didn't occur to me that my disease might be fatal.I suspect the second reason is that the whole ordeal appealed strongly to my adolescent appetite for drama. I distinctly remember indulging in some truly terrible and rather breathless cancer-related poetry and drawings all composed by candlelight in the first few weeks. I felt guilty about my curious excitement and then guiltier still when I began staying on the ward with dozens of children who were much sicker than I was then.I would travel the three hours to Sydney for treatment roughly once a week with whichever parent was free to take me. Sometimes the visits themselves would last for several weeks. Having mercifully been sent to a children's hospital despite being of borderline age, I often shared a room with up to five children, all usually under the age of 10. Once inside the hospital, my filthy language, burgeoning smoking habit, and other miscellaneous teenage urges were tolerated admirably, which I'm ashamed to say only encouraged me further.In general, I lacked age-appropriate support. In hindsight, I could have done with advice on everything from how to approach sex when bald and immune-suppressed, to instructions on how to avoid stretch marks while taking enough steroids to kill a horse. Needless to say, it was an experience made much harder by the absence of anyone remotely close to my age to share it with. My mum endured more snipes and tantrums than usual that year.Not long after my treatment began its effects followed, banishing whatever remaining romantic ideas I may have had about cancer, along with any corresponding guilt. One of the first things to suffer was my intellect. I found myself grasping for words for the first time in my life. I couldn't battle my parents and win with the same ease. And I certainly couldn't remember the lessons I was taking during my final year of high school. The thing I had always thought made me different and better had been diminished, along with my memory, and I hadn't seen it coming. I hoped fervently the damage was temporary.I insisted on plowing through my final year of school uninterrupted, despite the leukemia, but eventually I was kicked out of three of five subjects. I was told it was because I'd missed too much class time, although my failure to even open a book can't have helped.During those first eight months, I can remember most of the landmarks and knife-edge events, but I've forgotten the majority of the thing. I remember having methotrexate accidentally injected into the wrong part of my back and throwing up hundreds of times a day for two weeks (we counted). I remember the time I developed a pseudomonas infection on my left temple, which left a pinkie-sized hole when it began to heal. I remember months of steroid-induced panic attacks. But the rest of it is, to use the cliché, a blur.The point at which I stopped taking things quite as well was the point at which I realized that some of the damage was irreparable. I'd scraped by so far with my mantra “it's only temporary.” That theory came unstuck when I was told all those steroids had given me a nasty case of avascular necrosis in my right hip, cutting off the blood flow and killing the outer layer of bone, which would then collapse. Both my knees were affected to a lesser extent. I had a full metal hip replacement as soon as I'd finished my two years of chemo. I would never be as flexible or as physically useful as I had been before cancer.By then, I was a third of the way through a journalism degree at the local university. Despite the fact I'd only chosen the course as a stopgap, journalism agreed with me and my love of adrenaline, so I stayed on. Three years later I passed the 5-year event-free mark, terminology that in my case supposedly meant “cured.”After that, I developed what I considered to be a well-deserved disregard for my mutinous and slightly battered body, in the face of my mother's pleas to keep a weather eye out for those dreaded ‘late effects.’ I moved to the city and resolved to busy myself at a bar, restaurant, concert or play every night of the week.Despite my best efforts to look the other way, my body rebelled yet again in late 2010 when my annual check-up revealed I had the fertility of a woman 20 years my senior. My doctor, bless her, sat opposite me with a straight face and asked me whether I had a partner now and if so, whether kids were an option at the moment. Once I'd finished laughing, she told me that freezing eggs sooner rather than later was my best option.There were so many reasons that this second course of action was almost as laughable as the first. To the best of my knowledge, I didn't ever want children. Another problem was that even with the largest possible government rebate and top private health insurance, the treatments required thousands of dollars more than I possessed. Thirdly, I wasn't too keen on quitting fun for however many months it would take my ovaries to come up with the goods.After six months of mulling it over, I decided I would take option B. I had come to grips with just how under-qualified I was to veto procreation in the name of whatever kind of woman I would be in 15 years' time. My parents agreed to sink themselves further still into debt and fund the whole exercise and I in turn agreed to curb my idiotic lifestyle long enough to get the job done.For most people, this would mean cutting out all cigarettes, alcohol, and drugs. I, however, once I'd told my doctor how much I usually drank, was given special dispensation to have one or two standard alcoholic drinks a day. When I retell the story to friends, I include this detail because of its comic value, but I'm including it here because even though it's embarrassing to admit to a more medically-minded audience, it illustrates something about my life choices. Even pre-cancer I was a dedicated hedonist, but perhaps it's worth questioning whether I would treat my body the same destructive way I do now had I not been desperately ill.Once I'd spent several months detoxing, what followed was an invasive, hormonally-charged, and exorbitantly-priced science experiment. Every day I would give myself at least one injection, and every other day I would get up two hours early to go to the IVF clinic in the city for blood tests and a vaginal ultrasound. At the end of each cycle I had a general anesthetic and the eggs were manually retrieved.After one cycle which yielded only 10 eggs of questionable quality, I immediately began a second cycle, which thankfully enabled me to release 23 perfect eggs. Together, those two procedures were enough to give me a good chance of having one child using IVF technology after menopause (which is likely to hit around 30 in my case). I'm still not sure I'll ever use them, but knowing they're there is a weight off my mind that I didn't realize was there in the first place.In writing this account, I'm wary of reverting to my 15-year-old self and waxing lyrical about my medical woes, when my story is in all senses a happy one. I escaped without radiation and without a bone marrow transplant. As for my fertility, I not only had the good fortune to be made aware of my situation early on, but I was also able to access technology which, for all my complaints, is still strictly for the privileged.It seems customary to end testimonies like this with a platitude about how cancer does in fact improve the sufferer. I'd hate to spout backyard wisdom suggesting that anybody needs cancer, so instead I'll say that the most valuable outcome was being humbled profoundly. Although my confidence was shattered for a good while, it's been handy to realize so early on in life that a person is greater than the sum of their reproductive capacity and their IQ.Angela Lavoipierre, now 22, is a journalist at Australia's public broadcaster, the ABC. She has a passion for live music and politics. She is a member of the Australian support organization, CanTeen.FiguresReferencesRelatedDetails Volume 1Issue 3Sep 2011 InformationCopyright 2012, Mary Ann Liebert, Inc.To cite this article:Journal of Adolescent and Young Adult Oncology.Sep 2011.155-157.http://doi.org/10.1089/jayao.2012.1501Published in Volume: 1 Issue 3: March 20, 2012PDF download