Stephen Brown » chemotherapy

A Little Bundle of BIG Courage

Steve — Wed, 02 Sep 2009 00:49:06 +0000

One look into the eyes of this child and you will be swept away. Read her story and you will be amazed that such strength and courage can come in such a small package. My good friends Tim and Midge Kerr will be dedicating their Splash N’ Dash event this weekend in Avalon to the Love family. I will have an opportunity to meet Taylor and her family on Saturday and am looking forward to witnessing first hand the contagious spirit that defines Taylor Love. I will have plenty more to share next week, but wanted to give you a glimpse …

A message from the parents of Taylor Love …

Taylor’s Story

Taylor Nicole Love was born June 27th, 2005 a beautiful, blue-eyed, blonde-haired baby girl. Her sparkling blue eyes told us she would be a charming, joyful sister to her brothers Adam and Kyle. As she sang and danced in anticipation of Christmas 2006, we noticed a bruised and apparent lazy eye. First a visit to her pediatrician followed by a trip to an ophthalmologist led us to our eventual nightmare. On December 12, 2006 our 18 month old baby girl was hospitalized and diagnosed with stage IV, high risk neuroblastoma a deadly cancer with no known cure. She had a tumor on her left adrenal gland, a tumor behind each eye and disease in her bone marrow. We would now learn what a horrible, aggressive and relentless disease this is.

Since her diagnosis Taylor has endured countless procedures, biopsies, blood transfusions and stays in the hospital. She has undergone 7 rounds of high dose chemotherapy, a surgery to remove the tumor in her abdomen and a stem cell harvest. She has completed 4 rounds of a phase I clinical trial which included immunotherapy treatment and IV radiation. She had undergone radiation treatments to her head, orbits and abdomen and is currently undergoing treatment in a phase II antibody trial at Memorial Sloan Kettering Cancer Center in NYC.

Even as these treatments beat down her body, Taylor amazes us with her strength, courage, and contagious spirit. We continue to be inspired by our sweet little angel, with her sparkling blue eyes and cheerful smile. Watching Taylor play with her brothers and listening to her sing gives us the hope and strength we need to walk down this long uncertain road.

To learn more about Taylor and neuroblastoma, including ways you can help, please visit www.taylorlove.org
For more on this weekends Splash N’ Dash, please visit www.timkerrcharities.org

Words You Long to Hear

Steve — Fri, 10 Jul 2009 15:44:19 +0000

(and say)

Just wanted to share one small blurb of an email that I received last week from a friend who was recently diagnosed. These are words that every patient lives to be able to say. And everyone else prays to be able to hear:

“As for me, I am on the upswing from the transplant. My new cells engrafted very quickly which was great. I am still fighting off some of the other side effects that follow a BMT, but am hoping for discharge to home sometime next week. Can’t wait to get out of here!”

From Where I Sit

Steve — Sat, 13 Jun 2009 18:49:55 +0000

I am in a pretty good place; physically, mentally, emotionally, however you would like to measure “good place”, I think I am there. My health is now excellent, but my diagnosis left me with a keen awareness of and an appreciation for a lot of things that I may have missed prior to February 24th, 2006. I was reminded of a lot of things last week when I attended a Cancer Survivors Celebration Day which was held at the local hospital where I had been treated. It is an annual celebration with several speakers including docs, survivors, and even a comedian. (Last year I was even one of the honored survivor speakers.) The odd thing is that the evening started with an informal meet and greet in which tables with refreshments lined the entire chemotherapy and radiation treatment and waiting areas.

Now, you have to try to understand the feeling one gets walking into a chemo treatment center. I always tried to keep things as light as possible. I loved my nurses and when I went through treatment (which, if I did the math right, was 40 sessions over a two year period) I sort of felt as if it was my job to walk in there with as much energy and excitement that I could find. Part of it was done in fun just to drive the nurses a little crazy, and part of it was just my way of dealing. I remember one particular session where I arrived for my treatment before they had opened the doors for the day. This was never unusual for me as I need to be early for everything. But I was so amped up that morning that the reception opened the blind covering their window, and quickly closed it saying to the staff, “Steve’s here already, who wants him”? And then we all had a laugh once they let me in. Sometimes my energy at 8 a.m. was a little over the top for those just starting their long work day.

So, getting back to my very long winded point … remember … that Cancers Survivors Celebration Day? Yes, so the refreshments lined the treatment and waiting areas. And I was getting such a strange feeling trying to reconcile where we were. Initially I found myself thinking, “Can’t we find a better place to do this?… Do we have to be so close to the rooms and chairs where the poison is administered to so many people in an effort to kill their respective cancers”?

But the more I thought about it, the more I realized that it was the perfect place to kick off the evening’s program. Survivors and their families got the chance to mingle and celebrate in the very area where they had all waged war – and won. It was our own little version of Iwo Jima. We were all Marines and were taking pride in raising our survivor flag in the soil of the treatment center.

The rest of the evening proved to be quite moving and inspiring as well. It is encouraging to see how far cancer remission and cure rates have come over the last few decades. We are winning the war on cancer. There are still many battles yet to come, but we have so many of these things on the run. The work we are doing is working … all of the donations, and grants, and dedication, and research – this work all saves lives. Don’t ever think for a minute that this stuff isn’t making a difference. It is.

And from where I sit, that’s a good thing.

Why I Do What I Do

Steve — Mon, 01 Jun 2009 19:20:23 +0000

I am conviced that there are so many “reasons” for my leukemia diagnosis and more importantly, there are reasons that have drivien me to do the things that I have done as a result of my diagnosis. I may not always know what those reasons are, but the people that I have been able to connect with are too many to mention or even count. I wanted to take a minute and share just a couple of examples of people who have found me or stumbled upon me… or tripped over me as a result of my diagnosis. When I receive emails like the ones below, I feel like I have a greater purpose and clearer direction. In reading a few of these, maybe you will better understand why I continue to do what I do.

Steve,

A friend of mine sent me the link to remissionman.com, and I felt the need to reach out to a fellow triathlete/former soccer player/leukemia surviving dad. After browsing your site, I’m beginning to think we’re cosmically joined at the hip as the similarities are almost scary. I won’t bore you with the details–you’ve lived them–but I just wanted to enlist you as a valuable member of my own support crew if you’re willing. If there’s one thing I’ve learned since I was diagnosed in late 2004, you can never have too many friends. Holler back if you get a moment. Until then, be well. In health and happiness -

Steve,

It’s great to read about your story. I was just starting triathlons before my surgery. Someday I’ll get back to it. Gotta take care of a few things first… Keep up the good work!

Steve,

Thank you so much for your story. I too have CLL and am in complete remission. I am less fit and older and your story has inspired me to do something about the “fit” part. Thanks again. Good luck.

Steve,

You are a true inspiration. I am Vince’s wife Janet and I relived your struggles. Vince and you are very similar. Janet Papale

Steve,

Hi…

My husband is a follower of Graeme Street and a believer in the Hammer nutritional products. He came upon the feature article on you in the January issue of Endurance NEWS. While CLL is probably more common than people realize, we have never seen any articles written about people, athletes like yourself, who have had this disease.

I was diagnosed with CLL in 1996 at the age of 47 because of blood work that I had requested just for a good physical only to find my white count was higher than normal. The doctors just kept an eye on it but it never subsided and in 2000 I began therapy and had an autologous bone marrow transplant. I was out of remission after 5 years and again we played the wait and see game. I will be starting chemo in March to try and get back into remission.

I have been biking for many years as well as skiing, doing some weight training and anything else to keep healthy. I think I have succeeded with as much as I am able to control. I have always felt good except during treatment.

I guess the point of writing to you is to try to find out as much as I can about what you did to keep yourself fit-Hammer products in particular as well as your nutrition in general. I am very active and do follow a good diet-except for the love of chocolate, dark of course.

The article actually was refreshing compared to all of the depressing articles on the Internet which I have stopped reading long ago. I want to remain as active and as vibrant as possible not only for myself but for my husband and 6 grandchildren. I really don’t have time for set backs.

Please let me know what you did, what your treatments consisted of, and how your disease progressed.

Steve,

I read your bio on your web site and was very intrigued. I guess I am sending this email because I too have a story. 1 1/2 years ago I quit smoking and drinking and began running. I did my first sprint triathlon (Irongirl)last August and have completed 2 marathons so far. Not only that but in 1995 I was diagnosed with Multiple Sclerosis. I just became a certified fitness trainer as well. I too want to be people’s inspiration. I believe if I could do these things anyone can. I want to help people have their own stories to inspire others, I am not sure how to do this, any advice? Thank you

And those are a few reasons why I do what I do.

Keeping Demons at Your Back

Steve — Mon, 02 Mar 2009 19:59:53 +0000

When I was diagnosed my treatment protocol was one week of chemo then three weeks off. I repeated that for four treatment cycles initially and then had some maintenance treatments every six months for two years. I have always been a fitness junkie so I was a little unsure how treatments would impact my lifestyle – which could have had a pretty negative impact on me emotionally. Luckily, my doctor and I “reached an agreement” (more on that someday) and he allowed me to continue to train through and in between treatments as long as I felt good. When I was tired, I promised I would rest. But when I felt good – I worked out.

Since I was treated as an out patient, I often ran back home after my chemo treatments. Part of it was to try to control SOMETHING in a relatively uncontrollable situation. Part of it was just to try to stay fit. But part of it was also to send a message to the cancer that I was not going to lay around the house and be a victim. This ended up being a very empowing move which I am sure aided my swift remission. Granted not everyone is a runner, but simply walking and moving or doing something during an illness and treatment can help keep you balanced and focused. And that sense of emotional well being and stability has to have a positive effect on your overall healing process.

Get out and move.Enjoy the moment, the day, the scenery, whatever. Just do yourself a favor and get active. It is one of the most effective methods of therapy around ! And it’s FREE.

My Diagnosis

Steve — Sun, 21 Jan 2007 02:45:05 +0000

2005 had been a very rough year for our family. My father had become ill and spent 3 months in an intensive care unit, until we lost him in August of 2005. I spent just about every day at that hospital and became all too familiar with the hospital bistro meals, and the sights, sounds, and smells of an intensive care unit. A few months later, still grieving the loss of my dad, my mom was back in the same hospital for triple bypass and aortic valve replacement surgery. Being back in that hospital environment so soon after losing my father was not a pleasant experience for any of us. But we got through it, and after a few post operative complications, my mom returned home happy and healthy.

We were all eager to flip the calendar over to 2006 and start fresh. We needed a fresh start and we thought we were owed a break. At the same time, I was beginning to have some difficulty swallowing so I scheduled a few doctors’ appointments to try to determine the reason why I had been having throat issues. And that is where the problem began. What I thought was going to be a simple tonsillectomy, turned out to be a Leukemia diagnosis. Upon hearing the news, I did what most people do in that situation, I scratched my head, got depressed, and tried to figure out “Why me”?

But soon enough, the solution became clear to me. I knew what I needed to do. I needed to address the problem. Discuss my options. And fix the problem. I needed to do so with minimal impact to my family and loved ones. We could not afford another family crisis. I think I willed myself back to health because I just refused to have it any other way. I owed it to myself and to my loved ones. Fortunately, I was blessed with an amazing support crew who helped catapult me back to health.