Young Adult Cancer Canada - Community - Articles

Want to go back to school? Wondering How?

2009-05-14T13:38:15Z

As we know, many young adults have to take a break from school during the treatment phase. Some will manage to do both, but for others, it’s just not possible. When the treatments are over, the getting back on track or “reintrajectorizing” (as YACC likes to say) into life can be very challenging on an emotional, physical and environmental level. Post cancer, young adults will have personal expectations and dreams, but they will also be subject to the expectations of others. Many questions will arise; What now? What if? Where? Why? Huh? What’s up Doc? Etc.? Physically, it can take months for the body to fully recover, and sometimes, it does not necessarily come back to the same place it was prior to the cancer experience. Not necessarily in a negative way, but just in a different way and challenges can also come from the environment. Young adults will have to face obstacles like finding a job, insurance, having financial difficulties and finding some money to go back to school.

Society has not thought all of those problems through, but for some, it’s getting there. After having many survivors and professionals asking about existing bursaries to help young adults, who had cancer, go back to school, I did some research.
While searching on the net, I bumped into Scholarships Canada http://www.scholarshipscanada.com an educational site for students to find scholarships, student awards, bursaries and grants. At first, I was not really successful in finding anything that could be useful for the YACC Community, so I contacted them directly and they gave me a list of possible awards that could benefit young adults, post cancer, who want to go back to school. They explained to me that, while most of the awards identify information as cancer research, they still found five awards that may be of interest to those affected by cancer. You can find more details on their site but, if you want full access to their services, I suggest you create an account on ScholarshipsCanada.com. It’s free and simple and that way you can get into specifics. When you create the account, they ask a bunch of questions about your interests, schools, degrees, etc. and there is a section reserved for special needs, you could include “Personal Challenges” in there, cancer not being one of the specific needs…Another topic all together!

The Awards are:
• Cancer Survivors’ Fund of Canada Scholarship
• Howard Lee Memorial Scholarship
• Spiritual Warrior Scholarship, The
• April Allen Memorial Undergraduate Scholarship
• Marilyn Van Stone Memorial Bursary

Continuing my search, I also found the site INFUSION Canada. Their mission is to focus on “fostering innovation, leadership and growth in young Canadians supporting cancer survival.” They have a bursary to help those going back to school, but it is only for Ontarians. There seems to be different criteria (childhood cancer survivor, live in Ontario, etc.) that may not fit your profile, but they have many interesting programs and it may be worth a try. At YACC, we will try and connect with INFUSION Canada to see how we can collaborate and be connected to them. In the mean time, you can have a look at their website: http://www.infusioncanada.org/programs/bursary.html.

Megan McLeod, Social Worker and Supportive Care Coordinator at the Community Cancer Programs Network in Winnipeg, facilitator at many YACC events, and a wonderful woman… had a conversation with Jamie Penner, Accessibility Advisor at the University of Manitoba. There seems to be some support to help post treatment return to studies there, but I don’t have all the details. I know of other initiatives that were started, but I could not find any concrete information on them. When I do, I’ll let you know.

As you can see, this will have to be a work in progress. I am sure there are other sources and bursaries across the country. If you know of any, please let me know at . I would like to keep that information available on our site so more people have access to it. The awareness around the young adult reality is getting more and more present, and finding out what is out there and what is missing will only help us get closer to having appropriate and sufficient services and support.

Helping every step of the way

2009-05-04T17:13:17Z

A few weeks ago I told you all about my trip to Vancouver to the CAPO Conference. I also told you the Conference allowed me to meet with great people from everywhere all working towards the same ultimate goal; giving better cancer care to patients and families. Among the professionals I met, I had the chance to talk with Shelly Cory, the Executive Director of the Canadian Virtual Hospice (http://www.virtualhospice.ca). The Virtual Hospice is a bilingual website which provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators. The website is fairly new; it became available in 2004. Shelly approached me after attending a short presentation I did on YACC and the Forgotten Generation; she wanted to talk about how we could work together on making the Virtual Hospice more accessible and in concordance with the needs of young adults and their families and friends. This discussion got me thinking…

On April 16, 2009, the Canadian Cancer Society made their 2009 report public. It was titled: “More Teenagers and Young Adults with Cancer Surviving”. Their report focused on cancer in adolescents and young people 15 to 29 years of age. Reading this, I thought: “What about the 30-35 year olds? Aren’t they young adults as well?”, but I digress, let’s stay focused here. That was wonderful news, but we know that steps still needs to be made in order to really get the survival rate to reach the level observed in children and elderly people. In the report, we could also read: “As more young people with cancer survive, there is increasing need to do more to meet the distinct challenges of these young patients, according to Canadian Cancer Statistics 2009 released today by the Canadian Cancer Society”. Totally agree with that, but through my discussion with Shelly, it was also clear that we also need to take care of those young adults that are fighting the disease until their last days. The survival rate is better, but it’s not what it should be, which means young adults don’t always make it and I believe this needs to be addressed.

The Canadian Virtual Hospice is a source of information and support exclusively on palliative care needs for people of all ages. Patients, family members, friends and professionals can go on the site and access articles, general information and also ask a question to a professional. For most people, palliative care is associated with “there is nothing left to do” when in fact it is still a form of very “active” medicine, the interventions are different, but so much is done in palliative care. Also, palliative care is not necessarily limited to the last few weeks of life. It can last longer, so having proper and sufficient support and information is crucial.

Living with cancer as a young adult is a different experience, we’ve said it many times. We can then imagine that dying as a young adult is also different in the sense that the issues the young adult, the family, the friends, the siblings are dealing with are different. I believe The Virtual Hospice to be a wonderful resource to get support and information through various channels. You can have access to pertinent and accurate information from home. When you are a patient or someone helping a loved one through the palliative care stage, this can make a big difference.

In the YACC family, we have lost wonderful and inspiring young adults and I truly hope they had all the support and the information they needed in that difficult time. Connecting with Shelly and making sure young adults know about resources like the Virtual Hospice is a way to honor and remember those we miss.

If you have a chance to go on the site and have a look it would be great. If you feel some things could be done to improve it and reach the young adults needs better, please let me know (karine@youngadultcancer.ca) and I will make sure I give the information to Shelly.

I know it’s not happy talk, but unfortunately, end-of-life sometimes become part of dealing with cancer and I hope for the care and support to be available at all stages of life. If you want more information on the Virtual Hospice, don’t hesitate to contact me.

Live, Laugh and Love Karine

Young Adult Cancer Canada: Connecting Survivors Coast-to-Coast

2009-04-23T12:26:58Z

When I was first diagnosed with cancer, I never dreamed I would sit in a room full of young adult cancer survivors and listen to the voices of strangers echo my own thoughts and experiences. At 30 years old and as a new mother in rural Nova Scotia, I felt very isolated in my disease. I could not imagine a reality that included national conferences focused specifically on cancer amoung young adults. This year I’ve had the pleasure to attend not one, but two such events held by Young Adult Cancer Canada (YACC), formally RealTime Cancer. This summer, I spent five days in Jouvence, Quebec for “Retreat Yourself ‘08” and in October, I participated in the “Kicking Cancer’s Ass Conference” (aka: Survivor’s Conference ’08) in Lake Louise, Alberta. Every year, these events bring young cancer survivors and supporters together to share their stories, to inspire each other, to laugh, to cry and to consider what they have to offer others.

Geoff Eaton, founder of Young Adult Cancer Canada, had a vision upon his own cancer diagnosis in 1999. Geoff’s vision included a support system for young adults dealing with cancer. He recognized early in the game that survivors and their supporters have lessons to share with others. These lessons are important to the healing process and are valuable both to those newly and yet-to-be diagnosed. He launched an online community called RealTime Cancer, a web-based support tool that promoted survivor stories and generated virtual community support.

Having met Geoff in June 2006 at a Cancer Care Nova Scotia Survivor Roundtable, I was intrigued when I received an online invitation this spring to attend “Retreat Yourself ‘08”. This one-of-kind Retreat took place and was delivered in partnership with Montreal-based Hope & Cope, a non-profit, support organization for cancer patients and their families. The weekend was free to thirty-one survivors & supporters, and the program focused on sharing the wisdom of the participants and building a community of others who truly “get it”. Everything from fertility and relationships, to loss of dreams and redirection was discussed amoung survivors, supporters and health professionals. For some, Retreat Yourself marked the first occasion to speak to someone their age in a similar circumstance. For others, the Retreat provided an opportunity to witness the experiences outside the parameters of their specific cancer for the very first time.

The YACC Conference also involved sharing stories and inspiration, but facilitators also prompted participants to consider how they might help the larger community. For every 30 attendees at a Conference or a Retreat, there are another 6470+ young adult cancer survivors per year in this country. We know these survivors would benefit from attending Retreat Yourself and/or the Survivor’s Conference. These events provide opportunity to share and be heard, to listen and to learn. At every event, a community is born. A community of supportive, understanding people with one thing and every thing in common. I would encourage any young survivor to consider attending one or both of these events. Supporters who want to learn more about helping their loved one through a cancer diagnosis, or learn how to live well after the battle, should also attend. You are not alone.

Based out of St. John’s, Newfoundland, Young Adult Cancer Canada not only hosts these events free of charge, but also subsidizes travel for both survivors and supporters. In addition to event information, surfers will find an abundance of survivor profiles, health information, an on-line community, a photo gallery, fundraising opportunities and YACC background information. Check it out.

[Published in CBCN’s Network News]

Follow Your Gut

2009-02-24T18:52:52Z

Let me start by saying I spent a lot of time trying to figure out why I got diagnosed with cancer…..why had he picked me? Well after some long nights thinking and even longer nights crying I think I figured it out. I think maybe I was given cancer so I could give cancer a voice. You see I am a talker, about anything and everything. So I guess he wanted me talking about something more important than the weather.

In August 2007 my identical twin sister got diagnosed with papillary carcinoma (thyroid cancer). She had been on thyroid meds for years and had an unusually large neck that she had asked doctors about for years. But no one felt it was anything to be concerned about; until December 2006 when she was really ill with pneumonia. She saw a different doctor who told her he could see the growths in her neck from across the room. And so began her journey with cancer. She was diagnosed in August of 2007. She had the entire thyroid removed and did the radiation…..and all that comes with that.

When she saw her oncologist she asked him if her identical twin should be tested and he said well maybe but nothing really to worry about. So being the concerned sister she asked me to demand an ultrasound on my thyroid. So in December 2007 ( a year behind her) I found out that I had a number of lumps on my thyroid but of course nothing to worry about. About two weeks later I was sitting at the same surgeon’s office that my sister had and he reassured me it was more than likely nothing. Mmmmmmmm nothing; well I demanded surgery as soon as possible. I waited for eight months to get surgery with many calls to the secretary asking for someone to listen to me as my gut was telling me this was not “nothing”.

So I had half of my thyroid removed to test the lumps. And so began my journey. As odd as it sounds my sister found out December 2006 she had lumps and found out August 2007 she had cancer and I found out about my lumps December 2007 and that I had cancer August 2008. Coincidental, we don’t think so!

I am now waiting for the second surgery to remove the other half as it has three lumps as well. Against the surgeons’ opinion; against oncology’s opinion; I have made the choice to remove the rest. It seemed so clear to me to remove it but the doctors didn’t see it that way. Then again they did not think I ever had cancer so with all respect I am going to listen to my gut.

I wanted to share my story as I am hoping someone out there will read it and get tested, demand someone listen to you, expect more from our medical system and don’t stop until you get it. I am now stuck in the waiting game that all cancer patients get really good at playing. ‘Hurry up and wait’ should be the cancer motto. You wait for tests, then results, appointments, surgeries, treatment, and finally your life back. I am anxiously waiting to be on the other side of this diagnosis. I want to get the other surgery complete, treatment (if needed), and kick cancer’s ass so I can move on with all the other important things I want to do….like laugh, hug, play in the sand, sleep in, walk in the rain, lay in bed with my children telling me jokes early in the morning. I want my life back. I am angry most days, as I am a control freak and one thing I have learned is you have to be willing to give up some control when you have cancer. My health sits in someone else’s hand, date book, schedule and that upsets me immensely. I want what I am worth…the best - immediately!!! We are all worth that much. I am a survivor already; even though I am not completely through my journey (as if anyone is ever complete with cancer) but I am where I am because of my persistence and my voice. I tell everyone my story who will listen. I don’t want anyone to be “shhhhed” by another person telling them it is nothing to worry about.

These are the only bodies we get and I intend to be good to mine.

I had no symptoms, no signs, and no reason to be concerned except my twin sister’s diagnoses. And that was enough for me!!!

And so began my journey……

Healing with Laughter

2009-02-24T18:51:39Z

We have all been told that laughter is the best medicine and I agree. Laughter helps to release endorphins in our body which in turn makes us feel good and it helps ease our pain and give us more energy when we feel tired.

I have found that one of the best ways to ensure that I have enough laughter to help me to heal, is to participate in a laughter yoga course, often held in places such as the Y or in the case of Montreal, it is held in the Wellness Center run by the Hope and cope organization. The particular course that I am referring to is the one given by Tracy Shafter once a week every Wednesday for 45 minutes. [For more information on Tracy's class please click here].

I find that when I am feeling stressed, laughter yoga helps me to feel relaxed. I feel much better after a class than when I first arrive there.

There are also many benefits to Laughter Yoga. It teaches you how to breathe properly. Most of us don’t breathe properly, we tend to take deep shallow breaths and we breathe from our chest and not our stomach. The laughter also gives your body an 'internal jog' making you feel more energized.

This class also gives you permission to laugh and be silly. As adults, we don’t laugh as much as we did as children. We are told from a young age to "wipe that silly grin of our faces and to stop acting so silly”. As we get older, we tend to forget how to laugh and just be silly. This class gives you permission to do both things, forgetting all your cares and worries. We only laugh about 10 times a day whereas children laugh about 200 hundred times a day.

I have to admit when I first started taking the course, I was a bit skeptical that the laughter would really help me to heal but after attending for the last couple months, my perception has been changed for the better and I would recommend it to everyone that wants to relax and feel better.

There are many relaxation methods available but I have found that this one has been by far the best one for me. It has been well documented that laughter is the best medicine and this is the easiest way to make sure that you have your daily dose of laughter.

Some things that you could try on your own when you are not in the class are:

Sit down and close your eyes and think of something that happened in your life that is funny. Usually, you will start laughing in no time. Try doing this for about a minute or two and get a full belly laugh going.
Try greeting someone in a silly way that you would not usually do. It’s fun to see the other person’s reaction when you do this.
Talk gibberish, which means to talk nonsense that no one understands. It is one of the best things to do to help relax your mind. It usually results in laughter when you try this with someone else.

All in all laughter yoga is something that I would tell other people to try; with no doubt in my mind they will enjoy it as much as I do. If you are ever in the Montreal area, come and give Tracy’s class a try and if you are not, then look up laughter yoga on the internet and see if you can find any class in your area. You won’t be disappointed!

Making a Difference: ‘Chasing Rainbows: Young Adults Living with Cancer’

2009-02-24T18:51:12Z

Cancer; nothing makes people more uncomfortable than having to say that word, and deal with the elephant in the room. Like divorce or depression, it is one of a few topics in our polite society all too often brushed aside with sympathy, re-assurance, or hushed whispers. After all, while it may be tragic, it probably won’t happen to you.

That is of course, unless you are a male or female living in Canada, or anywhere else on planet Earth. According to the Canadian Cancer Society’s latest statistics, 39% of women and 44% of men will likely develop some kind of cancer in their life-time. One in four Canadians will die from the disease. In all likelihood, every family will be directly affected by this disease at some point. With local Southlake Hospital soon to become one of the biggest cancer treatment centers in York region and beyond, this cold fact is only going to become harder to avoid.

When most people think of cancer they think of chain smokers, heavy drinkers, and octogenarians. This is most certainly not always the case. In fall of 2006 I was one of the over 3,000 people under the age of 30 diagnosed with cancer in Canada each year. I am part of a group of young adults and youth often overlooked by statisticians and cancer-care advocates; partly because our numbers are smaller than those in other age groups, and partly because most don’t think that this sort of thing happens to healthy, young men and women.

While the diagnosis and type of treatment may vary among patients, none are easy. Physically, the effects go far beyond losing a few pounds and some hair. Every treatment has side-effects, every drug to help with side-effects has more of its own, and more or less every part of the body internally and externally is affected. A young man or woman undergoing cancer treatment can expect a quick change from having a body in its prime to one with many of the weaknesses common in a senior citizen. Ours is a unique perspective, as life is put on hold during some of the most crucial years when it is supposed to truly begin. Sympathy and reassurance are easy to find, but real understanding is not.

This is precisely what Pat Taylor strives to change. She lost her daughter to cancer several years ago. During the end of their time together, mother and daughter came together with several other young cancer patients to film a round-table discussion on the effects of cancer on young adults, including the physical, psychological and, perhaps most importantly, sociological aspects. When her daughter Sara passed on, Pat turned this footage into a documentary-style film she is now trying to show to public health officials, young cancer patients and care-givers, and the general public across the country. She has already had success in British Columbia, where the film was made, and is now doing screenings around the country, hoping to spread the knowledge and perspective the film lends to its viewers wherever she can.

You can find out more by visiting (www.chasingrainbowsproduction.com)

The Best and Worst Thing in My Life

2009-02-24T18:50:32Z

Almost 5 years ago, I found out that, statistically speaking, I had weeks to live. No one in the world had ever survived a relapse of my type of cancer following a stem cell transplant. Despite this, I have always said that, “Cancer is the best and worst thing that has ever happened to me.” People always understand the “worst part” - the surgeries, relapses, chemotherapy and its side effects, rumors flying, and death constantly lingering in my shadow. The element that seems to perpetually puzzle, however, is the idea of a best part. Let me attempt to explain.

The year was 1998 and I was a typical 15-year-old sophomore in high school, minding my own business. Being the starting 3-pointer shooter on the JV basketball team, flirting with boys and shopping with friends took up most of my time. Perhaps I was “too normal” and needed more excitement in my life. My whole back had begun throbbing earlier during the fall field hockey season. After a visit to the pediatrician, we were assured it was attributed to my heavy backpack. Months passed by as I wheeled my backpack around school. Life felt normal, despite my back hurting more each day.

On December 4^th, a Friday, I woke up early for the usual 6 AM basketball practice. As I got out of my bed, my legs had the sensation of feeling asleep and would not wake up. Although, I was mostly worried about missing the big basketball tournament game that night, I was also scared and agreed to see a doctor at St. John’s Mercy Medical Center. After all, my chest was slowly losing feeling too. After an MRI, my mother and I came back to the neurologist’s office and immediately, he did the old “Let’s sit down” talk. He showed us the scans and had emergency surgery lined up as my mother cried softly across the room in her chair. While comforting her, I thought, “Well, I will just accept whatever needs to be done and do it to get better!” My optimistic thoughts lacked any tangible reference point as to what treatment would entail. My second thought was worrying about letting my basketball coach know that I would miss our tournament game that night.

An egg-sized tumor was strangling the upper section of my spinal cord. My breathing was already being suppressed and shutting down my body by the hour. We met Dr. Bergamini, better known by his adoring patients as Dr. Bob. From Day 1, he became a second father who treated me like an addition to his already adequate brood of five. As I lay in the bed hooked up to IVs, I studied this man who had an immediate and long term plan to save my life, if I survived this emergency surgery. His tired eyes were very loving and he had driven back to the hospital on a Friday night to meet with my family. I could sense that he was a special person and I decided to trust him. With his relentless, caring, and knowledgeable approach, Dr. Bob became the first good thing in my whole experience. Then came the fact that I did not die that weekend, which was a very real possibility.

The positive: after the surgery I regained all feeling back in my body and suffered no paralysis. The negative: I was diagnosed with Askin’s Tumor, a very aggressive, rare and relatively unknown type of Ewing’s sarcoma cancer found in only 3 to 30 people worldwide each year.

After the surgery my hospital room quickly turned into what looked like a florist and stuffed animal store all in one plus 57 Mylar balloons of all shapes and sizes floating above it all. At times, I had my whole field hockey or basketball team squished into the tiny one-person room. At the beginning, it was like a circus in which you just never knew who or what was in the next act.

Chemotherapy began immediately and for 5 sluggish days in a row I would have a combination of drugs that dripped through an IV all day. One of the drugs, Adriamyacin, was a juicy dark red one in a syringe as fat as a drinking glass. It was so nasty that it took distracting me just to administer it.

My friends became excellent at skipping classes to visit me and my high school even encouraged it. During my first chemo, I still remember sitting on the floor playing Barbies like a little girl with a friend. Another time a new group of guy friends showed up mid-day with a bouquet of fresh flowers and just acted goofy. I prefer to remember these instances to the ones of laying in a dark room. Nevertheless, the hard memories seem to have a way of haunting me.

Every night I would go home with an ugly blue IV backpack that flushed fluids into me. It felt so murky inside my body that I dubbed the drug-induced state, “Fogland”. Fogland and the puking that it included remained until late each night when the drugs diluted a bit in my body. At these times I would stay up late because the sooner I went to sleep, the sooner I awoke which meant more chemo that would make me sick for weeks to come.

I missed school the week of chemo and then the next. Days were filled with lying in bed and going to the doctor for blood transfusions and leg shots to boost my blood counts that chemo had killed. I would have one “ok week” which meant attending school in the afternoons and then it was time for chemo again. With so much time missed, attending school became awkward at times - as most teenagers are not sure how to react to a “sick cancer girl” and some became overly nice to me. Before this, at my all-girl Catholic high school, I had been just “one of the girls”. Now I was a bald, weak, skinny girl with splints on my ankles and feet and what looked like a basketball game plan in marker on my back (to line me up with the radiation machine). It all stirred rumors that I was dying and I think my situation was scary for a lot of people. I cannot really blame them though-I can only imagine not knowing how to react if the roles were reversed. My class also came together to organize dinners for my family three times a week and saved up money to buy me a TV/VCR for my bedroom.

After the initial craziness died, it was the real friends that came over to watch movies on Friday nights instead of going to the latest house party. They were also the first to drive me to the house party, when I felt up to it and then if it was not fun, we could leave and say, “Well, Rachel does not feel good.” One must take advantage of such little perks-that some in the cancer world call “pulling out The Cancer Card”.

In March and April of 1999, I had 6 weeks of radiation interlaced with the chemo. A strong memory comes to mind during one of these chemo weeks when I had radiation too. I stepped out of the car with my IV backpack weighing me down and vomited into the bushes on my way in and proceeded on like it was a normal occurrence. I wondered if it all would ever end and if milk would ever taste good again. The chemo made my beloved milk taste like it was spoiled at all times.

Another positive event included my bald head because having grown up with long straight hair, I secretly always wanted to know what I would look like without it. So my wish was granted and my brother vacuumed my pillow religiously every night until it all fell out. Being a natural artist, my bald head became a challenging canvas--for painting designs, airbrushing, glitter lotion and more. My thought was that if people were going to stare anyways-as most did-I might as well give them something to see! My junior year Fall Ball dance led me to paint hot pink stars all over my head. I showed off my head to the onlookers as I momentarily danced away any thoughts of my illness.

After a full year of baldness and chemotherapy, I had somehow kept up with my classes with the help of teachers and friends. I was gladly done and ready to be a teenager again. My amazing family had gotten through the tough year victoriously and had done every step of it together. It was hard to adjust because people assumed that my life would go back to the way it was pre-cancer and once again I would be normal-whatever that means. I constantly struggled with feeling older than my peers and that was (and still is) challenging.

The year of 2000 I was one of two young adults chosen by my church to go to Rome, Italy. We attended the Catholic beautification ceremony of Blessed Chaminade, founder of the Marianist community of priests and brothers. He was beautified after a South American woman who prayed to him was miraculously cured of her lung cancer. While in Rome, pain pills got me through increasing pain levels and my faith was strengthened as I prayed to God and Blessed Chaminade for a healthy life.

In December of 2000, stem cells were taken from me to store in case I relapsed. While studying them, cancer cells were discovered and my whole body was under attack again. It was very discouraging but with the help of family, friends, doctors and God, I was not ready to give up this easily.

To embrace a new chemotherapy regimen and anticipate baldness, I ran to the drug store with a friend, bought some cheap hair dye and we bleached my hair, which is naturally very dark brown. It ended up turning an outrageous orangey-red color. Since it was so hideous, it could not have fallen out fast enough!

For the next 5 months, I was more IN than out of the hospital. If I had thought the first year of chemotherapy had been bad, I realized it was nothing compared to this. I was highly sensitive to the new drugs and endured horrendous cramping in my abdomen that the pain medicine could not touch, volatile puking, and explosive diarrhea—the works! On top of it, fevers and infections would develop in my blood and that isolated and hospitalized me even more.

During one of these stays, Randi, a fellow cancer patient and close friend, was in the ICU. She was fading quickly from a courageous fight with a cancer similar to mine. Somehow in the midst of the chaos with my body, for a couple hours I was able to sit up and ride down to her room with all my IV poles. In her last hours, we had a very special last night together. We all knew (and she knew) that her time was limited. I will never forget when she looked at me over her oxygen mask and forcefully told me, “Rachel, I will keep fighting in heaven and you must promise me that you will never stop fighting for all of us on Earth.” I have never broken my promise.

I missed the second half of my senior year of high school. With extra credits I had taken before getting sick, I somehow graduated with my class, got into the School of Architecture at Washington University in St. Louis and several other schools, had a serious boyfriend and kept up with friends during this crazy time.

A new batch of healthy stem cells was taken from me in May of 2001 to prepare for my stem cell transplant. My doctors barely allowed me to walk at graduation, because 3 days later I was admitted to St. Louis Children’s Hospital for the transplant. The night of graduation I found the energy to bounce around (literally) at the senior all-night event-one last hurrah before I was put into isolation for most of the summer. Looking back at pictures, I seemed to somehow have more energy than most of my friends. I guess that is what being in the hospital so long and adrenaline can do to a person.

Stem cell transplant admittance led me to one of the most intense regimens of chemotherapy that exists. It successfully killed my entire immune system like it was supposed to and brought me as close to death as possible. A few days later a hand-pushed syringe put my previously frozen stem cells into my IV in order to hopefully grow a new healthy immune system.

At first, I was doing as well as one can expect-even enduring the mandatory showers every 6 hours. These were necessary in order to rid the body of one of the chemotherapy drugs that leaves your body by secreting through your skin. Then the day came that I threw up so hard it projected onto the wall behind my head. From there, most things are blurry. My ENTIRE body started peeling horrendously - this included fingernails, lips, tops of my feet - even my insides produced buckets of junk through a tube up my nose and down my throat. I was burning from the inside out. Late one night, we had a special delivery-a noisy new bed usually reserved for burn victims. My loving dad sprung out of bed, strapped on a green and white umbrella hat, donned a Hawaiian luau shirt and huge clown glasses. We had an impromptu party for the new bed! There is nothing much you can do in situations like this but have fun with what is before you.

Well, as if that all were not enough, I soon started hallucinating and they discovered I had 2 extremely serious infections. I was transported to the ICU as my body went into septic shock. The doctors “brought out the big guns” as they put it (the strongest antibiotics), and along with my tiny immune system, I once again surpassed all odds and pulled through. Later on doctors have told me I am one of the sickest kids they have ever seen that did not die!

I learned to walk and eat again - something I had not done in months. I slowly strengthened my skeletal figure. My spirits were hopeful even though everyone my age left for college. I learned to enjoy each day and whatever came along with it. I also started doing more charity work and traveling to see friends at college.

Small setbacks were part of the norm. One day in June 2002 in typical “Rachel fashion” my gall bladder had to be removed. I went to a concert the next day and discovered a severe case of shingles in my right eye the next. Going to college orientation with a swollen eye, a wheelchair and an IV sure was an adventure - thank goodness I had a friend along!

Fall came soon enough and I ended up starting the architecture program at the University of Kansas (Washington University had proved to be too expensive and KU offered many scholarships). No one believed I could be “that girl in the wheelchair” at orientation. I excelled in my classes and met some lifelong friends - being able to touch a few with my story. Once again my body was screaming at me that something was wrong. I tried pain medicine but it was all too much and I was constantly nauseous, dizzy and sleepy. Struggling to keep everything together, I made the decision to move back home.

The day after Thanksgiving, we learned a new Askin’s Tumor was fighting my body between my heart, lung, pulmonary artery and spine. There was not much else to do at this point. We had exhausted our options and my weak body had maxed out on my lifetime doses of lots of chemotherapy drugs and radiation. Furthermore, surgery did not seem promising at the time.

This was when I asked Dr. Bob, “How long do you think I have?” He looked at me with those deep eyes explaining that he did not know, but maybe weeks to a few months at the most depending on what organ was invaded first. He told me whatever I did was my choice and there were no wrong choices. He believed in miracles and had even seen some. Hearing this statement made all the difference. There was hope and I decided to try for the miracle route! I would live each day and not pursue treatments since there really were no viable options at that point. I was also sick (pun intended) of most of the treatments even if they had been available to me.

This was when my love for art and poetry really took off. Doing creative things became my way of leaving myself behind if I passed away. Traveling became something else I dove into deeper while trying to see places and friends. I made it to points all over the Midwest and got a taste of college. My goal was to continually have something to look forward to so I could strive to stay alive for that event. A lot of my friends continued to stick by me, but I noticed that others distanced themselves. I also became aware of the toxic people in my life and realized that if my time was limited, it was wasted on them. This time less cards came to our house and my family received few encouraging words. I think some did not know what to do or say. On top of it all I despised the thought that if I died, I would become another statistic.

Three months passed and I seemed alright even naming the tumor Spanky. I came out of the fog I had been living in and said to myself - Wait, I guess I’m not dying! I got a job at an art materials store, started dating a fellow cancer survivor and got on with my life!

In the fall, a whole year with Spanky having passed, I was still alive as can be but was experiencing more pain. To help, I received 3 very low doses of chemotherapy. In December, a PET scan showed little to no activity in the tumor region. Another scan in January confirmed the same results.

During the entire time, my doctors scoured the globe for options from clinical trials to radical surgeries and new radiations. It seemed the expert doctors and researchers were not willing to help or did not feel they could do anything. Some of them said I should be on hospice or trying to remove the tumor would kill me anyways so what was the point. In any case, I definitely would not be cured in their eyes. No one else had ever survived my cancer after it reoccurred after transplant. Out of everyone, my family and Dr. Bob never gave up hope and I pleaded with God and Blessed Chaminade.

By May of 2004, an amazing thoracic and cardiovascular surgeon, Dr. Blucher came from the East coast to St. John’s. He considered my case and wanted to take Spanky out. While meeting with him, he answered all of my questions before I asked even one. I knew right away he was the one for the job! We decided to take it out the next week.

Surgery went very smoothly as he removed all of Spanky which by this time was the size of a small Nerf football. It had grown to capacity and sat snugly against my fragile organs. Somehow, it miraculously had not invaded any of them though! I thought of Randi, as I often do, and recalled my promise to keep fighting for her and my many friends now in heaven.

The tumor’s biopsy results showed the tumor had completely died inside me with very little treatment. We could not have been more ecstatic! In medical terms, it is a complete miracle and very unexplainable. It has been 3 years since that surgery and I am the only known case to survive a relapse of Askin’s Tumor following a bone marrow transplant. It is so remarkable that the Catholic Church and the Vatican are doing a formal investigation into my miracle. Church officials are strongly considering using my case to make Blessed Chaminade become a saint because of my prayers and those of my family and friends! (He would be the first Marianist to become a saint.) It is crazy to think they are talking about little me in the big Vatican. From time to time, I will get a call that someone important is coming to St. Louis to meet with me about this, and I never know when so I try to be on alert! I find great joy in seeing the positive sides of everything I have been through.

In April of 2005, I was asked to speak at the biannual conference in Los Angeles of pediatric oncology doctors from the U.S. and Canada. I was able to essentially stick out my tongue at the “experts” and say, “Haha, I survived without your help!” Well, this really means I politely gave a speech about my journey and shared some of my poetry and artwork.

Last summer, my efforts took me all the way to Denmark to help with a bike ride to give global awareness and raise money towards sarcoma cancer and research surrounding it. Another positive example out of many is my recent trip to Washington D.C. where I talked to Congressmen about cancer funding. I found out one of the Missouri Representatives I met with cosponsored the new cancer act!

I have found a couple of friends seemed to have issues with adjusting to “post-cancer Rachel”. It is like they got to know me when I was sick for so long that it was hard for them to see me outside of cancer. Some were able to work through that and one or two slowly drifted apart from me. Now more and more people, including my current boyfriend, only know “healthy Rachel” instead of the “sick cancer girl”.

I try to balance all the cancer advocacy and events in the cancer world with all the non-cancer things like school. It is something I am constantly tweaking and configuring. I have accepted that cancer will never leave me. It is embedded in me with what it has left behind - physically, mentally, emotionally and spiritually.

Cancer is the absolute best and worst thing that has ever happened to me. Because of it, I am driven to become an art therapist and continue helping others through my speaking, my writing, my art and volunteering. As Albert Einstein once said, “There are 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” I choose the latter.

The Humanization of Radiation Therapy

2009-02-24T18:50:02Z

It was with great trepidation that I approached my radiation treatments as I really didn’t know what to expect from the treatments or from the staff. There were many important things learned along this journey that could be of help to both patients and staff and today I wish to pass them on.

The term humanity here emphasizes the quality of humanness.

For the Patient:

Ask questions: If you have questions or concerns that are left unanswered, be sure to keep asking questions until you get the answers you need to feel comfortable about your treatment.

Help: If you need help during the course of your treatment, be sure to reach out to those that have been put in place to help you. If you are not sure where to turn, seek out someone who has been through the same thing, or the Dr’s that are trained to assist you in the journey.

Openness: Be open to listening to other peoples stories about their experiences and be willing to share your story if you are able to. This shows you that you are not alone in your experience and that there are many other people that have traveled the same road long before you did.

Patience: It takes time to go through the treatments so be patient. Also time is a gift that the staff can give to you by taking the time to explain your treatment and answer any questions that may crop up during your course of treatment.

For the Staff:

A sense of humor: A technicians’ job is very technical but it helps to put the patient at ease if they have a good sense of humor. It makes the treatments much easier to go through.

Compassion: It makes a huge difference how you go through your treatment if you are shown a little bit of compassion by the staff involved with your case.

Talking: Talking to the patient to help him/her feel at ease in a very stressful situation, is a great help through the course of the treatment.

Bedside Manner: This is something that the staff should have. It is not something that can be learned by reading about it or through schooling, it is a skill that needs to be in place already.

For Both Patient & Staff:

Relaxation Skills: The ability to put someone at ease whether it is talking to the other person, or asking them how they feel. It is also an important skill that the patient can learn to put themselves at ease and relax enough to go through the treatment without feeling uneasy.

Communication: Something important that both the patient and staff need to be able to do. It helps to be able to communicate your needs or worries and it helps the staff to be able to effectively communicate what they need for you to do.

I am at the end of my course of treatment for cancer and during my journey I have found many of the above skills listed to be of the out most importance for both the patients and staff alike. My only hope now is that they can be of help to someone else going through the same journey.

The Cost of Living: No Cure For Cancer

2009-02-24T18:49:57Z

The following article was sent to us by Matthew Zachary, an 11 year young adult cancer survivor and the Founder/Executive Director of Steps for Living. Matthew has suddenly gone deaf in his left ear. The condition is called Sudden Sensory Neural Hearing Loss, which is a direct result from the cancer treatments he received 11 years ago.

Matthew is a true survivor who believes that this has only reinvigorated him to 'stay the course and continue to advocate on behalf of the more than 500,000 [US] young adults living with, through and beyond cancer each and every year.'

Matthew wants to 'stress the importance of recognizing that remission is not a cure and that public awareness and adequate funding for adolescent and young adult cancer survivorship programming is tantamount to that of cancer research.'

Steps For Living is a progressive nonprofit communications, support and social advocacy agent for adolescents and young adults with cancer. Their mission is to increase quality of life for this population by connecting them with trusted and credible cancer survivorship tools, including social networks, peer support programs and psychosocial resources.

Matthew's Essay:THE COST OF LIVING: NO CURE FOR CANCER

Life is about choice.
Remission is not a cure.
Survivorship is all the rage.

Why we fight...

I remember the first time I sat down at a piano and asked my mother, 'Where do you put your fingers?" She showed me a simple five-note scale with both hands and, almost instinctively, I repeated with precision. The next words out of her mouth were, "You're getting lessons." At that point, I know music would always somehow be a part of my life.

I was 11 years old. It was 1985.

It wasn't until my third year of college until I realized that a true career in music was possible. My dreams of composing symphonies for film were drawing nearer with each semester. A trip to USC Film School in the spring of 1995 sealed the deal for me and I knew where my life was going, an energized and passionate neophyte with dreams bigger than himself.

Someone once told me that if you want to smash your goals on the rocky shoals of intention, then simply tell God your plans. In retrospect, now 11 years later, that seems a double-edged sword. Truth to power.

Summer 1995: I was enjoying a paid summer internship for Dean Witter on the 68th floor of Tower One of the World Trade Center when I first began to notice that my left hand was behaving strangely. (Growing up in New York City had many advantages but the opportunity to work for three months at this facility was a life-changing event for me, then 21.) It wasn't until I got back to school and begin playing piano again (upwards of 60 hours per week), that I noticed a major difference.

The fall of 1995 was fraught with uncertainty as my left hand slowly lost it's dexterity and eventually failed all fine motor coordination tests, rendering this aspiring pianist (and lefty) unable to perform, write or type. A diagnosis of brain cancer in December would make strange sense of the madness and seal the deal that - perhaps only for now - my dreams must be put on hold.

I could spend paragraphs upon paragraphs about what it felt like to be a young adult with cancer whose invincible life came tumbling down in an instant. Two words, however, can sum up the experience: isolation and resilience. No fear. Perhaps blind ignorance and deft denial served their purpose but, in the end, how dare this get in the way of my dreams? I have a life to live and damned if I let this stop me. The pianist who couldn't play and the college senior who couldn't graduate was determined to see through this uncertain future.

"When am I going to die," I asked the doctor.

Or is this death?

There is a price to pay for surviving anything traumatic, medical or otherwise. Few, if any escape unscathed. That seems to be human nature. So, how do we cope in the aftermath when subtle - or not so subtle - reminders consistently influence and compromise closure, or the illusion thereof? For me, I had the mixed blessing benefit of being told that my life in the wake of my cancer diagnosis may not be a bed of roses given the intensity of the post operative treatments barraged upon my body for 33 torturous sessions of excessively high dose craniospinal radiation (5940cg).

Right off the bat, upon completion of treatment, I had lost a remarkable 110lbs in less than three months. After throwing up 5-10 times per day nonstop for that entire period, I had eroded the lining of my esophageous (antiemitics were of modest help), inducing a permanent physiological and neurological dysphagia (swallow disorder). My saliva glands were decimated (and, to date, only operate at 70%) leaving me with a chronic xerostomia (dry mouth) I was left virtually infertile, my testicles and sperm production was ceasing to function correctly. My brain, eyes, ears, glands, spine, heart, lungs, liver, kidneys and primary chest organs now all faced a potentially compromised future of chronic illness, physiological deficit and, even more scarily, a near certain and unpreventable secondary recurrence of cancer as a direct result of my treatment within 10 to 20 years.

Needless to say, I may have survived, but only in the loosest sense of the word for the "therapy" prescribed to save my life, nearly ended it back then and may be the causal eventuality of a life cut short before it's natural time.

I presently live. That's what I do. As best I can.

And I live a "better than the alternative" lifestyle. Meaning, I'd rather be here with these issues than dead and useless to the world.

Good came from this.

Three years after treatment, in late-1998, I finally got busy living and moved on. One of the happiest days was when I released my first solo piano album - Scribblings, songs from which had been composed in my head for almost three years post treatment as it took that long for my left hand to regain it's strength and dexterity at the keyboard. Balance in my life seemed to have been restored. I may never be the Hollywood composer but at least I still had my music - a peaceful reconciliation for a 25 year old. A second album followed two years later and a third was composed but never released.

And so, in addition to the Vaudevillian cornucopia of maladies, chronic symptoms and physiological setbacks that I had learned to live with, they were but only the beginning, nee a staging ground for the true tests that were yet to come.

In 2003, my fertility returned however I will forever experience extremely low counts and below average motility. I must continue to spend $400/year in sperm banking in the event my wife and I require a reproductive specialist for fertility assistance.

In 2004, it was an intermittent arrhythmia.

In 2005, it was ocular and periodontal shingles along with the chronic onset of Irritable Bowel Syndrome, Colitis and Gastritis.

In early 2006, I began to experience catastrophic depression and mania. I was diagnosed bi-polar and it was the general consensus of my providers that this was yet another latent influence on brain chemistry from my treatments.

In late 2006, I had a testicular cancer scare as a result of a new circulatory imbalance.

On March 18th, 2007, within a span of 3 days, I lost all hearing in my left ear. The pianist who once lost the use of his left hand is now unilaterally deaf. The diagnosis? "Sudden Sensory-Neural Hearing Loss", a rare condition that my oncologist confirmed with me is, without a doubt, 100% connected as a long-term side effect of my postoperative brain radiation. Essentially, my cochlea stopped working. Given it's location to be within millimeters of my tumor and the subsequent stereotactic gamma rays which beamed through my brain, I suppose it was only a matter of time before it gave out.

I can only imagine what may lie ahead but it is with utmost certainty that I will continue to be able to say, "I am still here."

Is this what it means to be a cancer survivor?

And yet, more good came from this.

A decade of experience and reflection and dissatisfaction yielded the birth of Steps For Living, a nonprofit support, communications and social advocacy agent for young adults with cancer whose goal was to use music and the arts to create lasting change in how the public relates to cancer. I founded this organization because I believe that this orphaned age group within the cancer continuum stands the most to lose without proper diagnosis, adequate targeted treatment, access to quality care, long-term follow-up programs and social networking support as they have the rest of their lives to reconcile the trauma, move forward and confront whatever ramifications (physical, spiritual, financial, emotional, practical) that may foster in that wake.

In our small, niche world, we're a hit. And we're making a difference by fostering connections, building communities and reversing the feelings of isolation faced by so many.

The past eleven years have played out for me as an orchestrated symphony of odd medical issues and rare, unique chronic health conditions all baffling physicians, defying conventional wisdom and wreaking havoc on my perception of being 'cured'. I am certainly not alone.

And this raises a controversial issue.

What does "Curing Cancer" mean? Seriously, what does it mean? I personally equate "cure" for cancer with "victory" in Iraq. It's nebulous and subjective but certainly very catchy, sexy and marketable. I remember being told, "You're cured. Go home. Get on with your life."

Evidently, that's not necessarily the end of the story; for me and millions of others like me.

I do not deny that the physical malignancy is gone. It's been 11 years and there is still no evidence of biological recurrence. So everything is hunky dory, right? Uhm... no.

I may be "disease free" or "in remission", but I am certainly not CURED of cancer. Remission cannot be equated with cure. Getting cancer and surviving is not a cure.

Remission is not a cure.

Being disease-free is not a cure.

I get sick to my stomach when I hear of organizations relaying, racing, running, walking and talking about a cure for cancer. In my opinion, there is no cure for cancer in the same way there is no cure for HIV, Diabetes, Asthma, Allergies or Autism. Fifteen years ago we funneled billions into HIV/AIDS research to find a cure and what was the end result? Better medicine. Better technology. Chronic condition. Manageable disease. Great strides. Revolutionary health outcomes. Lasting social change.

No cure. Or, from a certain point of view, the 'cure' was in the 'chronic'.

I am not looking to trivialize this in any way but in the US at least, people live with HIV by taking a cocktail of medication every day for the rest of their lives. The virus never gets worse but it never gets better. Now considered a manageable disease, it was the new diabetes. A death sentence had become a life sentence of lifestyle management, dietary restrictions, ongoing medical costs and endless prescriptions. Today we don't talk about "curing" AIDS, we talk about "ending" AIDS. The semantics make a difference.

In a similar parallel, I have several young adult friends who live with cancer, taking medicines similar to the HIV cocktail where the cancer lies in stasis, never worsening and never retreating. Is this a cure or the end result of better research, targeted therapies and molecular medicine? Instead of talking about "curing" cancer, should we be talking about "ending" it? Is the 'cure' in the 'chronic'?

With the dawn of the 21st century, it seems time to get with the times.

It should be recognized that the notion of cancer's "cure" has been summarily supplanted with more appropriate and relevant language such as "easing the burden of cancer with a goal of eliminating death and suffering." This was the new directive of the National Cancer Institute when it refocused it's original declarative, "to cure cancer" back in 2003. So, if the focus is now on prevention, early detection, better medical technology and quality of life (e.g. survivorship), where does "cure" fit into this?

It doesn't.

Is cancer the new HIV as HIV was the new diabetes? If so, how do we, as a society, reconcile that notion and reprogram our mindset from a 30 year "Manchurian Candidate"-style inculcation by the establishment that promised, as the old National Cancer Institute mission clearly stated, a "cure" for cancer?

"Cure" has unfortunately become nothing more than a catchy, exploited, arbitrary and abstract health marketing term that has lost all sense of meaning and purpose - and I am not alone in this sentiment. No one wants to lose hope but reality needs to settle in on what's going on in this country with cancer now considered by all measures of public policy to be a chronic condition and manageable disease.

Perhaps someday down the road a 'cure' may take the form of individualized genetic vaccines, which enable our bodies to manage cancer cells more effectively and prevent them from spreading rampant. But we're still going to get cancer. It just won't be nearly as life threatening or life altering as it is today.

Here's more food for thought - Cancer is a naturally occurring biological process that is as old as evolution itself. It is impossible to cure it or end it, just manage and control it. Not to mention the fact that we direct most of our energies treating cancer's symptoms and not the causes that induce the process by which it overwhelms our autoimmune systems and spreads. The wildfire-like rise of cancer incidence over the past 20 years has brought shame and disgrace to the Nixon administration's declared "War on Cancer" from the early 1970s. (How's that going anyway?)

More so, the continued defunding of the National Cancer Institute budget by the current administration is yet another perfunctory slap in the face to the more than 10,000,000 American cancer survivors (and their 30,000,000+ caregiver network) who should be rioting in the streets in unification to demand answers and action on the part of the 2008 presidential candidates. Where do they stand on the issue? Hillary? Obama? Are you going to publicly promise to replenish the depleted NCI budget for 2009?

Frankly, I'm willing to bet that if Jenna Bush got cervical cancer tomorrow, George W. and his unenlightened cadre of myopic cronies might reconsider what he has done to decimate our hope in the government's prioritization of this public health epidemic.

Yeah, I said it.

I am a survivor because I choose to be. I wear my experiences like a badge of honor. I am proud of what I have been through and hope to encourage others to stand up, embrace their survivorship and shout to the rooftops, "I Am Still Here."

And when you're young, it's terribly isolating. If I have learned anything, it's that psychosocial support and access to those resources is as critical to survivorship as is access to quality care. It may suck, but at least you're not alone.

And one more thought. I hate when people refer to us as "victims." That's about as low as you can get. Seriously, what's wrong with you people?

Dear Media,
Never use that word again.
Love, Matt

As I mentioned before, cancer, at least for me, was not per se a death sentence. It was an actually nascent to a life sentence of vigilant self-advocacy in navigating the chronic (and hopefully) manageable diseases and health conditions that continue to befall me in the wake of my simply not dying from cancer 11 years ago.

Get with the program.

There are 10,000,000 of me living with, through and beyond cancer in the United States, 600,000 of who are still under 40 and have the rest of their lives to consider the impact of their survivorship long-term.

Think about what "cure" means to you and where you give of your time, talent and treasure. It's 2007. Has your charity gotten with the program?

Life is about choice.
Remission is not a cure.
Survivorship is all the rage.

I am still here.

You are still here.

This is why we fight.

This is life + cancer. No cure.

Thank you for your prayers.

Fertility – Olympic Gold Medal 1000 mm Freestyle

2009-02-24T18:48:35Z

As I sit to write this article, I have before me a press release dated February 28, 2006, titled "Sperm banking gives teenage cancer patients hope for the future". This was forwarded by a survivor friend of mine and has been a source of wonder and laughter ever since.

To be honest, I couldn't believe that in 2006 someone actually needed to do a research study to find out that young guys would like the option to bank sperm before treatment kicks their ass and potentially kills all their swimmers permanently.

Having got that off my chest, you will soon find out that this article is one of the most satisfying, jammed-packed with joy articles I've ever written.

My topic today is fertility, I have written another article on this issue on our site and I talk about it all the time. But today is different; this article is different.

Upon my diagnosis of AML (Leukemia) almost 8 years ago, I started treatment and ultimately had a bone marrow transplant before I was able to bank sperm, thus leaving me permanently sterile (if you consider 99.97% permanent). My previous article dealt with my life as a sterile young adult recovering from cancer.

This one is all about Geoff Eaton, the Olympic gold medalist. I'll explain.

Although I've been diagnosed with leukemia twice, had my life-time dose of radiation, two transplants and been told by a long list of health professionals that they've never heard of anyone's sperm returning after two transplants, this is the story of how my boys came back.

Now it's not a medical story because I'm not a medical doc; but it's a great story, and the best part is that it's true.

To give credit where credit is due, throughout the last many years I've seen a few complementary healers (homeopath, naturopath, etc) and they've all felt that my boys would come back as I got healthier.

So I continued having sperm tests after my second transplant, always with the same result - nada.

Then in April 2005, I dropped off my little plastic cup on the way to work to keep my testing up, called in that afternoon to chat with my fertility nurse who said "Geoff you have 0.2 million sperm, with motility of 10%!" I was jacked! Holy shit, how did that happen? This is still a super low count; but it's a number other than 0 and while the boys are barely dancing, they're dancing!

I wait the standard 72 days and in July have another test, call in that afternoon and get a different nurse. It was the most awkward conversation of my life. I explain who I am and why I'm calling. She checks my record and says, "You have one sperm". I sit silent for a minute then say, "One". She says, "One". I say, "Can you put that in context for me. On the last test, I had 0.2 million". Cutting me off, she says, "No, you had 200,000" (Obviously not a math major). I thought in my mind, "So last time did you count out all 200,000 and this time just the 1!?!?!?!"

Weird call.

That fall, my wife, Karen and I get in to see a fertility doc to begin talking about our options for starting a family. We had a great chat but the doc reassures us that my sperm count is like we're using birth control; there is no way we'll have children naturally. Over the course of the last almost eight years, I have begun to love it when the odds are so strongly stacked against me. You'd think this would have been a clear indication of what was to come but not even I could grasp it yet.

Then I wait another month. December comes and a week before Christmas, I go drop off my plastic cup on the way to work and later that day, I call to check my results and talk to my regular nurse. She says, "Geoff, you have 0.3 million sperm with motility between 30-40%!" Now, this is still a super low count but I've increased the count by 50% in six months and motility is up 400%; that's progress.

So I give my wife the good news and say, "Lover (not her real pet name), I'm going to take a few weeks off and then get tested again in 3-4 months." For those of you new to this game, before going for a fertility test, you are best to avoid hot baths and saunas for 72 days which has some connection to the production of sperm. I happen to love both and had been avoiding them. So over Christmas holidays, I hit the sauna every time I went to the gym, enjoyed our tub and then the strangest thing happened; without even knowing I was training for it, I won an Olympic gold medal in the 1000 mm freestyle, or shall I say one of my boys won!!!

Yes, a few weeks into 2006, just after my last positive but still super low test and a few weeks of hitting the sauna, one of my boys beat the odds in a way I never have before. He/she heard the start gun and gave 'er, albeit against a much smaller group of competitors than normal but that doesn't take away from the victory at all.

Today, Karen's belly is the biggest it's ever been, she looks the best she's ever looked to me and in another month or so, we'll welcome our little Olympic champ into the family.

So gents, remember, just because you've been given tough news about fertility, just because you've had tests that show your swimmers to be low in numbers, miracles happen!!

Two Years and Counting

2009-02-24T18:48:10Z

On August 13, 2004, the doctors told me that my cancer was in remission. Everyone I knew congratulated me on the good news - the funny thing is I don’t remember being overly happy that day. I think my non-emotional response was more of a defense mechanism than anything. I didn’t want to pin all my hopes on the news given on August 13^th because if the opposite news had been given, I didn’t want to be of the mind set that all was lost. I also had been cleared before in the spring of 2003 and before that I was cleared in November of 2002 (the time of the original diagnosis/surgery) – so I think I was of the mind set that even though the doctor told me that I was clear, I wanted to take a wait and see approach.

As I write this article my cancer has been in remission for over two years – the longest I have been cancer-free since my initial diagnosis in 2002. Speaking to various medical professionals, I am of the understanding that the two year mark is a big milestone, especially for those such as me who have had a “reoccurrence”. Obviously, the further one moves away from the date on which they have been “cleared”, the better. They tell me that the next big milestone is the five year mark. At that point, a “reoccurrence” of the cancer should be minimal (although not out of the question).

The past two years have been challenging. People who know my medical history always ask me how I am doing. I always say things are going well and then their response is something to the effect that “You must be happy that the cancer is behind you”. I always respond, “Yes, I think cancer is behind me”. However, what I am really thinking is that my cancer experience will always be a part of me and a part of who I am. Unfortunately, cancer (at least for me) will always be something that is lurking in the shadows. This is especially true when what I call “a life altering decision” has to be made; the thought of relapse is the first thing that comes to my mind.

In the fall of 2005, two “life altering decisions” were cast upon me. The first was the decision to purchase a house (with my common-law girlfriend), the second was the decision to change jobs. In the decision pertaining to the house, the first thing that came to my mind was, “What happens if I get sick again or worse, what happens if I die? Would my partner be able to manage financially?” In the case of the new job I thought, “What if I was to get sick again?” I would be in a situation where I would have to “re-tell” my story again to countless people at work. If I simply remained at the job I was in and become ill again, there would be an “understanding” as people would already know my medical history. These two decisions (a house purchase and taking a new job) are big enough as it is; however, these decisions (at least for me) are made exponentially more difficult when you throw in the issue of cancer and a possible relapse.

I am writing this article a few weeks before I am to go in for a scheduled CT/check-up – a time when the thought of a relapse is perhaps at its strongest. For the most part, I do not think about what I have gone through in terms of my fight with cancer; however, as I approach the date of every CT/check-up, I become more aware of my cancer experience. With every little ache and pain, with every little tweak in my body, I think to myself, “I wonder if it is the cancer is coming back”. Once the thought of a relapse enters my mind, I quickly start to move down a slippery slope – “What would I do if the cancer came back?”, “Would I have to go in for surgery or worse yet, more chemotherapy?”, “Would I physically and mentally be able to handle a relapse?”, “I don’t think my body can take anymore treatment”, “I hate cancer!” Eventually, after a series of thoughts and questions, I usually end up with the following: if I am living with the constant threat of a relapse, why the hell am I not living for today?

This thought process doesn’t get me depressed but it makes me wonder about how the cancer has changed me – or more specifically, how the cancer hasn’t changed me. I come across other survivors whose lives have been fundamentally changed by cancer; however, this is not the case with me and I don’t know why. My cancer experience (like many) was life threatening and the probability of death was (and still is) very real; however, I am essentially living the same life that I have lived before my diagnosis. You would think that such an experience would inspire a person to fundamentally change their life but for me it hasn’t and I honestly don’t know why. I am not religious but I have tried to find some higher meaning as to why I was diagnosed with cancer. I have thought to myself, “There must be a reason for this cancer experience”; however, I have yet to find one.

I am fortunate to have made it past the two year mark; however, in some respects I feel unfortunate. I see other cancer survivors “making the world a better place” and, while I am inspired by these individuals, I don’t see myself proceeding down such a path. I have a somewhat new perspective on life because of my cancer experience but in terms of everything else (e.g. employment, relationships, lifestyle, etc.), it is pretty much the same and I honestly don’t know if this is a good or bad thing.

Fertility – “Oh Yes. It’s a Certainty” – Summer 2004

2009-02-24T18:47:05Z

The system failed me. And the worst part is that I was completely unaware of the issues at play. It’s one thing to miss an appointment due to a scheduling screw-up, to have instructions wrong and need a test repeated or to have obstacles consistently thrown in your path unnecessarily. But this failure is something much different. It is something I thought I had dealt with but I now know it is an issue for me more than ever.

Today, I am sterile, despite last-ditch attempts to bank my sperm after two rounds of chemo.

Within a week of being in hospital, I was quite able to recognize the shortfalls in our approach to dealing with cancer. Throughout the course of my treatment, I more specifically noted the big-time lack of focus on the needs of young adults. When you leave the kids hospital, you are thrown in the “grown-up” hospital with all the 50-80 year-olds but you have a totally different set of concerns, fears, issues and needs.

It is this massive void that has lead to the development of the RTC vision to inspire, inform and support young adults (15-30 years) dealing with cancer. We are founded on the belief that good things can always come from bad. In fact, our existence is that belief in practice.

There is a ton of improvements that I hope to influence in our collective approach to dealing with cancer but the issue of discussing fertility and a patient’s options prior to treatment is one of the most important for me.

I was in hospital for six days before starting chemotherapy for my diagnosis of AML (Leukemia). I had a collection of tests done that week and a Hickman Catheter put in my chest, but there was no discussion about the possibility that I might be sterile from the chemo or from the possible bone marrow transplant that I might have.

The only way this topic even came up was through my request to see a Doc after reviewing a list of potential side-effects from bone marrow transplants. I was actually presented with the one-pager of info in a discussion with my Doc and he ironically covered every bullet of info on the page except the final bullet which stated something along the lines, “transplant patients will be permanently sterile”.

Upon reading that line, I immediately asked to see him at which time he assured me, “Oh yeah, it’s a certainty”.

Whenever I encounter a situation that I don’t like, especially one that I don’t want to live with, my mind immediately searches for a way around the obstacle. This situation was no different.

After my second round of chemo, I traveled to Toronto for a bone marrow transplant assessment and, with the help of local healthcare professionals, I got relevant info about sperm banking options. There were no options at the time in Newfoundland but there were in Toronto. So while going to Toronto for my assessment, I planned a one week stay when I would attempt to bank my sperm.

I was already sterile from the chemo. Shitty. But always the optimist, I thought I can get around this by waiting to have a transplant for ,say six months or however long it took for what was suggested as a “temporary” sterility from chemo to reverse itself. Then I could bank my sperm, have my transplant and hopefully live happily ever after.

I learned pretty quickly that AML doesn’t work that way. You can’t give it time to recover, I needed to maintain treatment (which was one more scheduled round) and then go straight to transplant.

I was then forced to make the most difficult decision of my life.

Have the transplant and improve my chances of a cure to 70% (which means being in remission for 5 years) and willingly step into the world of sterility without having had the opportunity to bank my sperm.

Not have the transplant and reduce my chances of a cure to 20% and hopefully have my temporary sterility reverse itself and then live as long as I could without having had a transplant.

I took about a month to make this decision. When you are faced with huge decisions, I feel you want complete comfort with one of the options in front of you. That’s how I work but complete comfort was a luxury I didn’t ever experience for this decision.

I ultimately decided to have a transplant and testing since has confirmed I am sterile. I have since had a relapse of my Leukemia and another transplant. The fertility nurse I connect with says she has never heard of anyone’s sterility reversing itself after two transplants.

I’ve beaten the odds tons of times since entering the “cancer community” in 1998. I wasn’t supposed to ever leave the ICU or be well enough to come out of my drug-induced coma in '99, but I did. I wasn’t expected to be in remission past the fall or winter of 2003 but, a couple of days ago, I celebrated my third anniversary of my second transplant. Those odds don’t discourage me enough to loose hope because I know there’s always hope.

What really frustrates me is that this situation was very avoidable. A simple discussion that first week I was in hospital could have changed so many things for me both during my treatment as I tried to make my transplant decision and now as I build my life with my fiancé, who will be my wife as of New Year’s Eve 2004.

I have started to explore what happened that week I entered hospital. Why didn’t anyone have that simple conversation with me prior to starting treatment?

I deal through doing. The other way I want to deal is to make sure every young cancer patient is aware that they should ask the fertility question before they have treatment. Check out the implications of your treatment, ask your Doctor, make sure you know your options. Check out http://www.fertilehope.org; it is a great web resource for guys and gals.

My experience is hopefully a rare one but to make sure this happens as little as possible, please share this article with anyone you know who may be young and newly diagnosed with cancer.

Shock of Diagnosis

2009-02-24T18:46:42Z

So there I was... a 22 year-old recent graduate from Memorial University of Newfoundland (MUN) who had started my own business helping companies with Internet marketing strategies. Out on a Friday night at a buddies business reception helping him celebrate the opening of his spot. I was having this great conversation with a guy and felt weak in my gut, started to get the cold sweats and then just turned around to lay my drink on the table behind me and I passed out.

I woke up staring at the ceiling and hearing people tell me an ambulance was on the way.

I had been in an ambulance two times before, both with sirens going rushing to the hospital but neither turned out to be particularly serious. This time we had a relaxed ride, no sirens, no running red lights, just took our time and rolled into the ER for a "make sure things are ok" check.

I had blood taken, as a precaution, and was waiting to have my head/neck x-rayed to make sure I hadn't done any damage in the fall. But those tests were cancelled when my blood results came back.

Hemoglobin 75, platelets 20. What's up with that?

Those numbers didn't reach me until the next day or so and at that point they didn't mean anything to me anyway. I know now that hemoglobin is healthy at around 130-160 and platelet levels are normal between roughly 150-450.

My short stay that night moved into an overnight, then to 2 days, then 3-5 days, and on to a 2 weeks stay and then ultimately to an undetermined amount of time. They like to slowly bring you into the new situation that you find yourself in. That adjustment in expected hospital stay happened in the course of 48 hours.

So I went in on a Friday night and on Sunday morning my Mom, Dad and I had a meeting with my Doc to discuss what was happening and that is when I learned the very significant news, that is when I knew the path of my life was taking a very sudden adjustment in direction.

As we neared the end of the conversation my Mom very directly asked my Doc, "what do you think is wrong?" To which my Doc replied, "we think it is Leukemia."

I have no real memory of how the conversation ended but I do know that I was given 6 hours to leave the hospital, go home and get some stuff and then I was due to check back in at 8:00 that night for an undetermined amount of time. I was to start chemo later that week and I knew that leaving hospital but I knew very little more than that.

The Simpsons
Do you remember the Simpson's episode where they go to the restaurant and Homer orders this dish that has to be prepared just right? The main cook goes out for a break and the junior guy is left to prepare this crazy dish that is either "poison, poison, tasty fish." Homer gets his meal and is then presented with the fact that the dish was prepared incorrectly and thus he has 24 hours to live.

Well that is kind of the situation I was in. I had 6 hours out of the hospital, once I went back in I had no idea if I would ever leave again. I knew I would start chemo later in the week and things would flow from there.

So facing 6 hours that could be my last out in the world I did the things I loved most. I went home to my apartment to get some of the things I wanted for my hospital room (music, gym pants, my pillow, etc). I also went to Signal Hill, twice, once with my Mom and once with my Dad. And I had some buddies over for supper before I went back into hospital.

The determining moment of the day for me came when I went to my apartment right after getting out of hospital. While I was getting my things I had a brief exchange with my roommate who asked "what's up", to which I replied "it's not good."

He didn't let me away with that. Steve, who I call Gunnar, came in my room and held me to task with the very direct question, "what do they think it is?" I can still remember kneeling on my bed, looking at him as he walked in my room. And the thing I remember most vividly was that I knew the one word answer to his question but it wouldn't come out. I kept trying to say it, it seemed like many minutes before it came out, I don't know how long it actually was but finally I said "Leukemia, they think its Leukemia."

And as I spoke those words it was as if I this major weight was taken off my shoulders, the knife taken out of my back and literally in that instant my whole perspective switched and I started to say to my inner self..."yeah, they think I have Leukemia and I can f*cking tackle that!" With the voicing of those words "Leukemia, they think I have Leukemia" my whole world change, again, and began to wrap my mind around this massive challenge I had been handed. I entered hospital that night at 8:00 as expected and I remember going up the elevator with my parents and feeling as though I was walking to the ice before a big hockey game. And I decided that feeling, that mindset was exactly what I wanted in my approach to dealing with big-time challenge.

From there I developed my hockey strategy, which saw me approach each round of chemo like a game in a play-off hockey series. I had, and still have, an official puck, stick, jersey and cup.

Finding Meaning

2009-02-24T18:46:07Z

When you face a major challenge like cancer it is pretty natural to ask the "why me" question. I know I asked it for a long time, and at some level I'm still asking.

"Why me?"

I looked at the question from two main perspectives that were pretty much solely dependent on my mood that day. From one side I asked the question out of frustration because I was unable to do a lot of the things I used to do, like play hockey and soccer, shoot some ball with my brother, or even just be social and hang-out with friends. My treatments for leukemia involved lots of chemotherapy and that really beat me down, both physically and also obviously killed my immune-system. While I was in hospital I was often sick and always pretty disconnected from the world and when I got out of hospital I did what I could but my activity was still significantly reduced as I tried to rebuild a little before going back in for more chemo just to get beaten down again. It seemed like a vicious cycle, but it wasn't that vicious and it did end!

That was a major adjustment for me, reducing my activity level and disconnecting myself from my social circle. And it did push me to ask the "why me" question out of frustration.

However I also asked that question out of true curiosity. I really wonder, why did this happen to me!?

Why medically, as in what did I do in my life to create this disease inside me, what combination of factors lead to me developing leukemia? That was of interest to me at some level, but not a major concern.

The part of the question I still ask myself is the deeper side... the spiritual side of the question that gets me thinking about the purpose behind my illness. I honestly believe that all of our experiences have purpose, nothing is random, and everything has meaning.

I would say that I still ask myself that question because I feel that I've figured out some of the answers, others are there waiting for me to discover them.

A lot of people ask me about RealTime Cancer and do I feel I got sick because I was meant to start RTC. Maybe, but I don't feel that way necessarily. I like to believe that I would have been doing something that had purpose and was helpful to others whether I got sick or not. That doesn't mean I'd be running a charity, but there are a lot of ways people can make a contribution to the community and help others.

The meaning I've found from my cancer diagnosis and the amazing benefits have been more internal than anything. This internal evolution has created many external changes in my world. Cancer has changed my perspective on life and all things in it, I have an appreciation for things in a way I never knew and I approach my life differently.

Before I got sick I was in a hurry, a mad rush to get there. Where is there? Not sure, but I was trying to get there quick. The reality is I would have never reached my destination for two reasons, I didn't know what it was (I was a little unfocused we'll say, and that's an understatement) and the other reason is because I had little grasp of who I was as a person. I had no clue of my strengths and weaknesses as a person. I lived in fifth gear, rarely ever slowing down to "smell the roses" and evaluate what I was doing and where I was going. It just didn't happen.

My challenges have pushed me in that reflective direction, which you can tell from reading my articles and emails if you have read others. (If not I'd encourage it, cause I feel I've learned some important stuff in the six years, and yes it's almost six years since my original diagnosis)

What has happened in these six years is that due to low energy and stamina I've had lots of down time, and while you can fill up your down time with Jerry Springer and Ricky Lake, lets face it, there's only so much of that you can take. So eventually I turned my focus internally, and while I still suck at understanding my feelings (I live my life in my head far too much, but I'm working on it), I made the effort to think about my experiences and think about why I might have been given these challenges.

That train of thought took me to what others call "deep" places. I like to think of it as getting rid of all the crap and focusing on what matters most in life. Love matters. That's what I discovered. It's not necessarily cool and definitely not a tough guy thing to talk about, but I've never been worried about being cool or tough.

I went to those deep places to think about life, and let's be honest when you are diagnosed with cancer you are truly wondering how much longer your life will be. So you have extra incentive to try and figure things out before you go, whenever that might be. And those deep places, for me, don't involve religion or God, not that there's anything wrong if it does. But for me I had some things I need to figure out before I explore some of the traditional versions of how we got here and what our purpose is.

Here's what I've figured out, agree or disagree, you are welcome to do either.

There's this huge force, I call it the universe, and it connects all of us. Everything here on earth, and all those things out there in space that we can't see or touch. So we're all connected, yes, even "W Bush", Saddam and Osama are connected to the rest of us.

While we are here we can act from one of two main places, love or fear. We can't come from both at the same time and after a while you can get pretty good at figuring out from which "pole" your behaviour is originating.

For me, I've decided that I like how love feels, I like what I experience when I'm focusing on it, and I like what happens in the world around me when I'm coming from that place. So I've made the effort to do that. Sometimes I slip, other times I'm golden, it's all part of being human really.

I've also figured out that if more of us came from a place of love, in our relationships, at work, with strangers, with ourselves, then our world would have more love.

I take so many positives from my diagnosis of cancer. Would I have chosen cancer, definitely not, would I choose to erase it and start over, definitely not. Would I like another cancer challenge today... no thanks! But if it comes I know it will carry the right purpose, just as it has the past two times.

Pulling meaning and positive things from a situation that is viewed as such a negative has happened primarily through my search for meaning. And it is one of the best things I've done with my life to this point.

The Continuation of My Journey

2009-02-24T18:45:34Z

The last few months have definitely been a huge roller coaster ride. Things have been up and down constantly. Let me give you an update.

As you know, on March 23rd, 2004 I was diagnosed with a type of cancer called Lymphoma. A week later, after meeting with my Hematologist, I was given a more detailed form. Non-Hodgkin's Lymphoblastic Lymphoma. Nuff said. That day, during my meeting, I was immediately admitted into the Health Sciences, floor 4 north A. I had no idea what to expect.

After spending one night in hospital, all the procedures began. I had a bone marrow biopsy done (which may I add is not that pleasant), plus I had a hickman catheter put into my chest. This catheter is what all of my blood work and treatments would be done through. I was put in hospital on a Wednesday. On Saturday, I would start my first round of chemo. Part A!!!!

My room was constantly filled with family and friends. It was excellent to see how much support I had....although it was very tiring.

For four days, I underwent treatment. I believe it was a Friday when I was discharged. I went home feeling fine, but of course, slowly, things stared to drop. I became tired, and weak, although I wasn't sick at all. I guess those anti-nausea drugs they give you to take really work!! It's just that the chemo had started to make all my blood counts drop. Nothing unusual.

The next two weeks I was back and fourth to the hospital for blood work, and then two weeks later, out came my hair!! It started to fall out, so I said, "alright, enough of this..." and I shaved it off. I'll be honest, it didn't bother me the least. It was almost a relief because when your hair starts to fall out it hurts!!

Once I started to get my energy back, BOOM!! Admitted back in for Part B of my treatment. Another smack at the cancer cells!! Four or five days in hospital again. Once I was out, I felt good, and once again, a few days later, I was tired and weak again. After about five days, I was put back in hospital with a fever. That's something that's not uncommon either.

A fever usually indicates an infection somewhere in the body. When the chemo starts to eat away at the cancer cells, it also eats away at your good cells, such as your white blood cells that help to fight off infection.

So, I was in hospital on antibiotics for five or six days. Once my blood counts were up again, and my fever was down, I was out.

I have managed to undergo three full rounds of my regularly scheduled 4 rounds of chemo so far. Lots of trips in and out of hospital, lots of antibiotics to be taking, and lots of tests being done.

Just recently I had visited Halifax for assessment about a stem cell transplant. While there, after meeting with the transplant coordinator and doctor, I was told that a transplant was no longer in my recent future.

The doctor had said that I was responding to my treatment, and that his opinion was to go on with my last round of chemo, and go on a "maintenance" program.

I'm not really sure what exactly "maintenance" is, but I do know it's still chemo treatment I would undergo for up to two years, but it would allow me to go back to school, work, etc. The doc said that once all that was over with, if my cancer had not gone away, or if it came back, THEN I would have to have a transplant. He saw no reason to put me through a transplant, and it's risks if I was doing well. Apparently 30-50% of people have life-threatening complications when they undergo this type of transplant. That was that.

I was happy enough. Not only would I not have to go away for up to three months for a transplant, but I was closer to getting my life back to normal.

But that's when things changed.

As soon as I returned home from Halifax, the very next day, I woke up with pains in my joints, just like before....and all the lymph nodes in my neck were swollen and big again. GREAT!! Just what I needed. I went to see my doctor, and informed him of what had happened. I'm sure you can guess what he said. It was something along the lines of, "Well obviously your chemo isn't working the way it's supposed to. We'll have to contact Halifax and let them know the situation. I think the only thing that will work now is a transplant."

So here it goes again!! As of right now, I just finished another round of chemo. New drugs. They decided to change from the ones I was on because they weren't working. They are hoping these drugs will stop my cancer from spreading for now. Long enough to get me to Halifax again. I am scheduled to go the beginning of October for a transplant. I will admit that it's nerve racking and extremely scary. There are many risks involved with this transplant, but I am trying to best to prepare, both mentally and physically. I know the next few months are going to be rough. I'll be away from home, away from all my family and friends, and may not even be home for Christmas. But if that's what it takes for me to get better, then let's go!!!

I'll keep you updated the best I can within the next few months. Wish me luck!!!!

Young Adult Cancer Canada - Community - Articles

Want to go back to school? Wondering How?

Helping every step of the way

Young Adult Cancer Canada: Connecting Survivors Coast-to-Coast

Follow Your Gut

Healing with Laughter

Making a Difference: ‘Chasing Rainbows: Young Adults Living with Cancer’

The Best and Worst Thing in My Life

The Humanization of Radiation Therapy

For the Patient:

For the Staff:

For Both Patient & Staff:

The Cost of Living: No Cure For Cancer

Matthew's Essay:THE COST OF LIVING: NO CURE FOR CANCER

Life is about choice.Remission is not a cure.Survivorship is all the rage.

Life is about choice.Remission is not a cure.Survivorship is all the rage.

Fertility – Olympic Gold Medal 1000 mm Freestyle

Two Years and Counting

Fertility – “Oh Yes. It’s a Certainty” – Summer 2004

Shock of Diagnosis

Finding Meaning

The Continuation of My Journey

Life is about choice.
Remission is not a cure.
Survivorship is all the rage.

Life is about choice.
Remission is not a cure.
Survivorship is all the rage.