| "God does not comfort us so we can be comfortable,
He comforts us so we can be comforters." Anonymous
When I began this adventure, I could not find sufficient information with regard to running marathons with leukemia (CLL).
Also, there was not good information with regard to running marathons during chemotherapy. Therefore, in addition to the
main objective of this site, which is to raise money for children with cancer, I wanted to create a forum for people who
wanted to challenge their limits.
News Release regarding Acute Leukemia:
Comment: www.cancer.gov An excellent website for cancer patients. A resource for your type of cancer, expectations,
treatments, etc. There is also a list of free publications that you can request. I recommend Taking Time: Support for
People with Cancer. You can find the list of publications on the left side of home page (Popular Resources: NCI
Publications). After clicking on that link to access the publications, click on T.
Q. What is it like running with leukemia?
A. If I wasn't running, I would not have known anything was wrong, other than feeling a bit tired. Well, except for the
enlarged lymph nodes. However, when running, at times it feels like someone has placed an anvil on my chest and
sucked all the oxygen out. Probably how someone feels when they are having a heart attack. One important lesson I
have learned with regard to getting out each day and running - regardless how bad you feel when you force yourself
to get out, you are going to feel worse afterwards :)
Q. Do you have to prepare for marathons differently now that you have leukemia?
A. Physically no. Mentally yes. Marathons use to be 95% physical except for the last 2-3 miles. Then if I hit the wall, I
could dig deep and finish. With leukemia, the training isn't different, but the marathon is more mental. I have hit the
wall as early as 3 miles into a marathon. So, I begin mentally preparing myself for that the week before each
marathon. I begin them all at the same pace, but I never know when the anvil is going to drop. So now, my marathons
are 95% mental.
Q. Have you ever dropped out of a marathon since being diagnosed with leukemia?
A. No. I won't travel like that and drop out. There have been a couple that I thought I wouldn't finish and would collapse on
the course. At the Estes Park Marathon, a worker at the 25 mile aid station tried to pull me off the course. I caught the
flu or something 2 days before the marathon and couldn't keep anything down at the water stops. I guess by mile 25, I
must have looked pretty bad for them to want to do that. I managed to convince them to let me complete the last mile.
Q. How many marathons have you run?
A. That is a question that I am often asked. I never kept track of the number until I was diagnosed with leukemia. Before
that, it was just another run and like 5Ks, 10Ks, etc, I never kept a tally. There were three marathons that were close
to Mobile that I did each year between 1984 and 2000. The only way I know how many I have run with leukemia, is by
counting the states that I have run. I try not to repeat states since it confuses me when counting :)
Q. Do you remember the first marathon you ran?
A. I liken my first marathon to the first love of my life. I remember every detail about Babs and The Pleasure Island
Marathon. I wish I had more experience and proper training prior to both and could go back and do both right this time.
Q. Have you had chemotherapy?
A. I have been fortunate in that the blood counts only slowly deteriorated the first 3 years. Now they have reached a level
where my oncologist says it is time. For my colleagues sake, I hope it doesn't interfere too much with my running. I
am not as pleasant to be around when I don't get to run :)
Q. Why not support a charity in your own community?
A. My inspiration for this website was a phone call from a lady whose young daughter had leukemia and was undergoing
chemotherapy. Thus, I was looking for a foundations whose treatment and research focus on childhood cancer. Also
my fund raising efforts will in every state and felt name recognition of the foundation was important if people were going
Comment: Thanks for sharing this. I'm from Jacksonville, FL where there is a Nemours/Wolfsons children's hospital that
I've spent a great deal of time at. I can't speak for others, but it is a wonderful place. It wasn't for me, but for a younger
cousin who had cystic fibrosis, who finally passed a few years ago at the age of 21. I spent many spring breaks and
summers in there with her keeping her company when I was younger and she was 5-10. They would do great things for
the kids, bringing in clowns, the cow for some ice cream brand (can't recall the brand, but it was Elsie the cow), silly dress
up events and all kinds of things for the kids. They always took great care of my cousin, and thought you might like
to hear from someone who has seen first hand how great they are.
Q. What were your thoughts when first diagnosed with CLL?
A. How bad is this going to interfere with my running? Then after confirmation at MD Anderson, I realized this was
serious and a period of real depression followed. By the way, never allow a family member or friend to go alone to a
cancer center for this sort of news. The couple days I spent at MD Anderson alone made me realize how important
family or friends can be at times like this. I then told myself that I was not going to allow this to dictate my life or cause that
much depression again. Thus, my marathon adventures and now the fund raising.
Comment: A nice review of CLL.
Q. So, what is chemotherapy like?
A. Infusions occur Wednesday, Thursday and Friday every 21 days for 6 sets. During those 3 days, I continue my
exercise and running program. Late Friday evening the nausea begins and lasts until Monday, when I again begin my
exercise and running program, and appetite is back. However, I am now 10 lbs lighter.
Q. How has chemotherapy impacted your running?
A. Well, I can't run the weekend immediately following the Wed, Thurs, Fri infusions. The next two weekends do not seem
to be any different than before I started chemo. The issue with the tendonitis around the knee joint has been more of a
Q. Why CFR? I understand that FR is not a dangerous.
A. CFR is the recommended mix of chemicals for high risk CLL cell markers. Low risk CLL patients seem to do as well
with the FR mixture. Then they are not subjected to the potential worse cancers that the alkylating agent
cyclophosphamide sometimes produces through the DNA damage and mutations it creates. Sort of a game of
Russian Roulette that I would prefer not to be playing. http://www.sciencedaily.com/releases/2011/02/110225094938.htm
Q. Are you not taking anything for the nausea? Sounds bad.
A. I wear a Sancuso patch for 7 days beginning the day before chemo begins. Then receive an Aloxi infusion prior to each
day of chemo. Lastly, taking a Zofran tablet every 8 hr. So far, nothing seems to be working.
Q. What other drugs are you taking during chemotherapy?
A. Neulasta to stimulate neutrophil blood cell production. These cells help fight against infection and like other blood cell
types are knocked down by the chemotherapy. So far, I have not suffered from any side effects of this drug, i.e. bone pain.
Q. Have they found anything to prevent the nausea yet?
A. They added emend to the day 1 infusion for the 4th round of chemo. Dropped 12 lbs over the weekend. Three days
past the 3rd day of chemo, and the only thing I have been able to keep down are vanilla milkshakes and popsicles
(especially banana flavored). I feel sorry for frail people who undergo this particular treatment with CFR.
Q. How many more rounds of chemotherapy?
A. Just completed round #5. Two week later and I am off to Boise, ID for another marathon. Get back in time for hopefully
the 6th and final round. This last time, in an attempt to control nausea, they added Emend and Aloxi to each of the 3 days
of chemo. Also, in addition to the transdermal patch and Zohran, they had me add prescriptions daily for Dexamethasone,
Reglan and Benadryl to combat nausea. I guess they helped since I only lost 7 instead of the 10-13 lbs over the weekend.
Comment (shingles): Developed facial shingles 4 weeks after the last chemo session. Tracked along the dermatome
region of the maxillary nerve. The oncologist put me on oral acyclovir. Oral does not work for people who are
immunocompromised, i.e. chemotherapy. After 5 days of oral acyclovir, the condition worsened and I was admitted to the
hospital and put on i.v. acyclovir every 8 hr for 10 days. Currently on Gabapentin to reduce the postherpetic neuraglia
pain. It is important to start acyclovir within 72 hr of first symptom. However, unless you have had shingles, the start can
be very subtle. It started as an area of pain, like someone was placing a hot object against my forehead. I thought at first it
was where my running cap was rubbing. This was following 2 days later by a dark spot which I thought was a possible
melanoma. Then in another 2 days the blisters appeared and I realized what I had.
Comment (Vitamin D): If you have CLL, check out this article with regard to Vitamin D.