Main Page • John's Journal (2000-2003) • CLL Information • Contact John • Seattle Cancer Care Alliance • MD Anderson

June 14, 2005

 

The Lord stood at my side and gave me strength...2 Timothy 4:17

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face…

You must do the thing you think you cannot do.”

Eleanor Roosevelt

 I made it!! I set out last winter to accomplish the goal of riding my bike 100 miles a year after my bone marrow transplant. On June 6th I completed the 100 Mile course around Lake Tahoe as I participated in America 's Most Beautiful Bike.

 

The ride was truly a mountain top experience for me. Actually, the ride literally was a mountain top experience since the entire ride was at an elevation above six thousand feet and contained over 4,000 vertical feet of climbing. A little over a year ago I laid in intensive care not sure of whether or not I would live or die. Consequently, I can't even explain the emotions I felt as I was doing the ride. There were several instances where I would be riding along and I would just start weeping because I was so happy to be alive. There were many physical obstacles I had to overcome in preparation for this event, but the Lord got me through them. The people I rode with made the ride even more special. I know I couldn't have made it through this ride without the encouragement and support I received from other Team in Training riders. The goal of the ride was not to finish first. The common goal was to find a cure for Leukemia and Lymphoma. Some of the riders were cancer survivors, others were riding in honor of or memory of someone with cancer, while some just rode to make a difference in the battle against cancer. I will never forget the special people I met through this experience and the friendships made will last a lifetime. Thank you to everyone who supported my ride by your financial donations or in your thoughts and prayers. I raised $6,500 dollars for the event and all of the Team in Training riders in Tahoe collectively raised $7,000,000 to fight Leukemia and Lymphoma. Awesome!!

 

 

One very special person I met was ten-year old Patrick. Patrick is also a Leukemia patient and like me has been through two bone marrow transplants. His most recent transplant was this past September. He has been battling his Leukemia since he was four years old. I sat with his family at one of our dinners and was sharing how I am looking forward to getting my Hickman Line out, but mentioned I am not looking forward to having my blood draws done with needles again. Patrick's quick response was, “Oh, needles don't bother me. They don't even hurt.” Patrick's comments humbled me and inspired me at the same time. What a brave and courageous kid. His parents are incredible people too. The love they have for their son just exudes from them. I thought it was so cool that they were riding this ride for their son. There is so much this family doesn't have control over, but doing this ride is something they could do to fight back against Leukemia and Lymphoma. Amazing.

 

 

“The race belongs not only to the swift and strong,

but also to those who keep running.”

 

 

Another inspiring story involves one of my transplant doctors, Dr. Webster ( Devon ). I was so thrilled when I found out Dr. Webster was doing the Tahoe Team In Training ride. She was a very special doctor who not only treated me, but helped calm my fears by being compassionate and encouraging when I was afraid. She has told me many times that I am very inspiring to her and that is amazing that I was doing this bike ride only a year out of transplant. Well, during the weekend in Tahoe I learned some things about Dr. Webster that gave me even more respect and admiration for the person she is. When she was sixteen years old she was diagnosed with Muscular Dystrophy. Shortly after she spent nine months in the hospital on a ventilator. Her parents were there with her everyday not knowing if she would live or die. Once out of the hospital she was confined to a wheelchair for five years. Through all of these physical challenges she managed to get through medical school to become an Oncologist. If that wasn't enough, a few months before I checked in to SCCA for my transplant she was diagnosed with breast cancer. With everything going on in her own life, she was still taking care of me and calming me of my fears. I am just overwhelmed by her courage, strength, and ability to move on and do incredible things with her life despite her circumstances. To cap it all off, she is off riding her bike a hundred miles around Lake Tahoe to raise money for cancer. Imagine the joy her parents felt as they came to Tahoe and watched her do this ride. Dr. Webster is definitely what I would call a ‘Hero'. She is the inspiring one…not me.

 

 

 

On May 31st , a few days before the Tahoe Ride I had my official one-year follow up appointment at the Seattle Cancer Care Alliance. The day consisted a thorough physical examination (much too thorough actually…ouch.), review of all my one-year test results, and recommendation for my care over the coming months. Most of the results were very good. My cat scans were all clear, pulmonary function is excellent (all that cycling helps), and overall my blood count numbers are solid. On the down side, the Prednisone has decreased my bone density a little. Bone density loss is one of the many side effects of long term Prednisone use. In order to stop the decrease in density I will be taking additional supplements such as Fosamax on a weekly basis and continuing to exercise and get calcium and vitamin D in my diet. My skin GVH (graft versus host disease) is still a factor, so I am not ready to get off of the Prednisone. However, we are going to try and taper again so I can lower the dose and get to only taking Prednisone every other day. Having an off day significantly reduces the negative side effects. I also instructed to avoid long-term exposure to direct sunlight because the UV radiation can cause the skin GVH to flare. Despite all the prednisone, my eyes, liver, and kidneys are all in excellent shape. The most frustrating results were my bone marrow results. I have had an increase in abnormal lymphocytes. In December the abnormal lymphocyte numbers were at 1%. Now they are at 15%. Fortunately, the flow cytrommetry test of the marrow indicates that only 3% of those cells are confirmed CLL (Chronic Lymphocytic Leukemia) cells. My marrow results show that I am negative for the deletion of chromosome 13, which is a good thing. Active CLL usually tests positive for the deletion of chromosome 13. I am not happy to see any type of increase in the CLL. Yet I am encouraged that everything else looks good and the doctors also feel that one of the reasons I have an increase in CLL is the fact that I am on so much immunosuppression medication to control my GVH that we may be decreasing the GVL (graft versus leukemia effect). Therefore, Dr. Carpenter at SCCA has decided to make some changes in my medications so that my GVL can become stronger. We have eliminated the drug MMF and are adding Rapamyacin (sp??). Rapa (Rapamyacin for short) is also an immunosuppression drug, but it is less likely to interfere with the GVL affect. In addition, Rapa has shown to have some anti-tumor effect, which I want. I will go back to SCCA in August for another bone marrow draw and Dr. Carpenter feels I should see a decrease in the CLL numbers. I will definitely be praying for that. As I have said many times before, the road to recovery from a transplant is not a smooth one and there are going to be many bumps. Meanwhile, I will trust in the Lord for my health and ask that He continue to give me peace and keeps me calm in the occasional storm.

 

A big time praise is that I have been given the clearance to return to work. I will be getting many of my vaccinations this summer so it will be much safer for me to be around the kids. I am very excited to get back into the classroom. It has been over a year. So I will be spending a lot of time this summer getting my room ready for the fall. I am extremely indebted to Ryan Morris, the person who has filled in for me while I have been away. He has done such an incredible job and the students have just loved him. He will be greatly missed by his students.

 

 

In closing, I am just so thankful for each and everyday I have been given. Despite the various challenges this past year has been wonderful. I am blessed to be strong and healthy and enjoying so many wonderful experiences in life. I will continue to do my best to live passionately for today and not worry about tomorrow.

 

 

I was recently emailed a link to a short online movie called the Survivor Movie. The web address is: www.thesurvivormovie.com . The words and images in the movie are very powerful and offer a great perspective to have as a cancer patient. It's a great reminder that cancer is not who I am. Sometimes it feels like I am just “John the Cancer Patient' when so much time and thought revolves around my cancer, but it definitely isn't who I am. The words from the movie do a wonderful job of describing the positive aspects of the cancer experience, yet reminding me that I am more than just a person with cancer. When this life is over I want to be remembered by others for the person I was, not by the disease I had. So I look forward to my life beyond cancer and the opportunity for the focus to be off of the cancer and more on the person I am and the way I lived my life. I am hopeful that God has allowed me to live my life during my cancer battle in such a way that people know a little bit about the person I am inside.

 

 Here is the text from the Survivor Movie:

 

I have cancer,

But cancer does not have me.

Cancer is not who I am.

It is only a bend in the road that is my life's journey…

An unexpected detour on my path,

It is a lesson in the cosmic schoolroom that is human existence.

So I will pause to rest and heal…

and study the lesson before I move on to my life beyond cancer.

I will not give in to fear,

And I will not be discouraged by setbacks.

Setbacks are only opportunities to review the lesson.

I will not be ashamed of my scars.

My scars are the brushstrokes in the masterpiece that is my life.

I will be thankful for the many blessings cancer has brought into my life:

People I never would have known,

Love that I had never been still or quiet enough to witness,

Humility I needed,

Strength I though I had lost,

Courage I never knew I had.

I will remember that I can still have fun

And that it's okay – even healthy! – to be silly.

I will remember that to find joy in rainbows,

I must endure the rain.

And I will remember always that…

While I may have cancer…

Cancer does not have me.

 

Please lift up the following prayer requests:

 

•Praise Him for allowing me to finish the Tahoe Ride that meant so much to me.

•The changes in my medications will allow an increase in the GVL (Graft Versus Leukemia Effect) and effectively reduce the CLL numbers in my blood.

•The potential side effects from all the medications I am on will be minimal. Help me to get off of the Prednisone.

•Karen Kramp's chemotherapy treatments for her breast cancer.

•Karen Gustafson's transplant recovery. She has experienced some frustrating setbacks and needs the Lord's strength, peace, and healing.

•Jane's continued successful treatments for her Lymphoma. She has two more treatment cycles to go. Allow the chemo to completely eradicate all of her cancer cells. Give her relief from her fatigue as well.

•Britt's brain cancer and his daughter's Leukemia. Bring them both peace, comfort, and healing.

•Joanne's recovery from her transplant and complete healing of her cancer.

•Patrick's healing from his Leukemia and peace and comfort for his family.

 

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