Disney Marathon

As most of you know, my daughter Stephanie will be participating in the Walt Disney World Leukemia Lymphoma Society Marathon on January 9th in Orlando, Fl. More than 1,300 runners and race walkers are currently training as members of the Team In Training in preparation for the event. Since TNT first became involved with this exciting event, with a course that brings participants through Epcot Center, the Magic Kingdom and other fabulous Disney destination spots, nearly 24,000 participants have taken part. Over that time they have raised more than $65.5 million to support cancer research and patient services, while realizing their dream of accomplishing a major endurance event.

TNT has prepared more than 440,000 participants for marathons, half marathons, 100-mile bike rides, triathlons and hike adventures since its inception in 1988. In return for the great coaching and supportive team environment, those participants have raised more than $1 billion to support blood cancer research and patient services.

Fortunately, Ray and I will be able to attend the marathon. Steph's sister, Lisa will be flying in, and my sister Donna, and her husband Bill will also be on hand to support Stephanie. I will be adding pictures and blog posts about the event.

To learn more about Team In Training, please visit www.teamintraining.org.

Bone Marrow Biopsy Results

I'm happy to report that the results from my most recent bone marrow biopsy (taken on October 28th) are in and everything looks great! My oncologist e-mailed to let me know and added the word EXCELLENT (bolded and in all caps) as a side note. Guess that is about as good as it gets. As always I am incredibly relieved. My next bone marrow biopsy is scheduled for March 10, 2011. I have no reason to think that the results are going to be any less than EXCELLENT, but I always worry until I receive the news. Now I can breathe easy again until after the new year.

I have been having some GI problems though. Stomach pain, cramping, bloating, and all the unmentionables that go hand-in-hand with those symptoms. I had a endoscopy and colonoscopy last week, and was told that there is no sign of acid reflux or celiac (an auto-immune disease that runs in my family), yet I continue to suffer with discomfort. Dr. Michael Cox is my GI doc, and has started me on Align, a pro-biotic, Benefiber, and something called Complete Relief that I have been unable to find anywhere. I was using Prilosec, but Dr. Cox told me that long-time users often experience the same symptoms that I have been complaining about, so I discontinued using it. I hope this situation gets better, because I'm often woken up by the symptoms. I have a follow-up appointment with Dr. Cox on December 1st. Dr. Carraway, my oncologist, seems concerned because the symptoms could also be a side effect of the Gleevec. That is a scenario that I don't even want to broach even though there are alternative chemos. I feel like Gleevec is my friend and has worked so well for me that I am afraid to try another medication.

This is the kind of thing that I probably will have to face for the rest of my life as a result of my illness, as a result of the chemo I received prior to my bone marrow transplant, and as a result of taking a daily chemo pill. In the scheme of things I suppose I shouldn't whine, but it worries me nevertheless.

Interesting Article

I came across this article by David Wight in The Costco Connection. Each month they feature an illness on their Health Calendar. I thought it was interesting so therefore decided to include it here. I am typing this verbatim.

Leukemia & Lymphoma Awareness Month

The Leukemia & Lymphoma Society reports that more than 900,000 people in the U.S. currently have some form of blood cancer, and more than 53,000 will die from one this year.

That's the bad news. The good news is that improved thereapies and stem cell transplantation have dramactically increased survival rates for most blood cancers.

Leukemia and lymphoma are two forms of blood cancer. In both diseases, while blood cells, normall the infeaction fighters, fail to function properly and start to grow at an abnormal rate.

Leukemia starts in the bone marrow, where blood cells are made, and the cancer cells spread to the blood that circulates through the body in the arteries and veins.

Lymphoma starts in the lymphatic system, which draims waste-collecting lymph from body tissue. Lymphoma may develop in many parts of the body, including the lymph nodes, spleen, bone marrow and blood.

Sometimes there are no warning symptoms or signs of leukemia or lymphoma, or the signs and symptoms will be similar to those more common and less severe illnesses.

The best advice for any person troubled by symptoms such as night sweats, swollen lymph nodes, unexplained weight loss, tiredness or shortness of breath is to see a healthcare provider.

For information about blood cancer and way in which you can help, the Leukemia & Lymphoma Society provides deep resources at www.lls.org.

As Summer Comes to an End

Well, there's not much going on right now in regard to doctor appointments, etc. What is going on is that I had a wonderful and full summer that included a trip to Ocean City (yeah, I para-sailed), many splendid nights spent on the boat, and some good visits with my grandchildren.

I try to exercise everyday and am eating well. I have gained back some weight, but that is probably a good thing since I was looking pretty gaunt there for awhile. Currently I'm enrolled in Graduate School at Towson University and am taking an on-campus class called the Eloquence of Rhetoric. I took a very enjoyable on-line poetry class over the summer so commuting to campus takes some effort. The poetry class was a lot of fun, but the Rhetoric class on the other hand, is quite difficult. I tend to be forgetful and don't easily grasp new concepts without a lot of reading or discussing. Since of course I need something else to worry about, I wonder if some of that doesn't stem from "chemo brain"!

Although I feel pretty good most of the time, I readily admit that my pace has slowed considerably. I certainly can't do what I used to do before I got sick. So, house and yard work suffer, my cognition is impaired, and I'm certainly not the "party girl" I used to be. I still require 8 - 10 hours of sleep a night and occasionally feel nauseous. But, it beats the alternative so I don't really care. I am grateful for what I have and don't push myself to do anymore than I really want to do.

I have been doing some volunteer work at Hopkins recently. My first two sessions entailed sitting with 5 or 6 first year medical students and their preceptor and telling them about my journey with leukemia. It was very gratifying and with the one group particularly, I felt a real kinship on a very emotional level. The second part of my volunteer work involved me doing a little acting - I told my story just as I told my doctor how I was feeling back in January of 2008. Now it's not the student's job to diagnose, it's their job to learn how to take medical histories and to ask the "next" questions. They all did remarkably well considering it was only their 2nd week of medical school. They are all so bright and eager - too cute.

So, that is my update as of now. Yes, I still worry about a relapse, and yes, I still worry about the effects of Gleevec on my organs, and yes, I'm still taking it all in. I look at myself sometimes and gasp at how I've aged. Maybe it's just me being critical of me (like all women do) and don't get me wrong, in the scheme of things it doesn't matter at all, but it's amazing what cancer and chemo can do to a girl! It takes a while to absorb.

Visit with Oncologist

Yesterday I had an appointment with my oncologist and I am happy to report that all things continue to look up. My blood work indicates that my white, red and platelet counts are normal and my liver and kidney functions are good. With the exception of some minor aches and pains (old age I fear), I am good to go! While there I received my boost shots for polio, tetanus, diphtheria, hepatitis B and Hib Vaccine. No more immunizations until May 2011 when I'll be able to receive live vaccines like chicken pox and measles. My next bone marrow biopsy is scheduled for October 28th. I am wondering how many of those I've had since this whole thing started - I think the number is somewhere around 8-10.

While I am feeling well physically, I continue to struggle with some cognition problems. Frustrating to say the least, but in all fairness, it's not the end of the world. Don't get me wrong, I'm not leaving the stove on or anything, but I often forget parts of conversations, items from the grocery store, etc. Perhaps it has something to do with my age - no one can really say. So my remedy - write everything down. Simple!

Ray and I had a wonderful vacation in Ocean City recently. Quite a few family members, including Brad, were able to make it for a visit so it was truly a special time for me. Check out the new picture of me and my siblings. I also went parasailing one day - a bucket list item for me for quite some time.

Team In Training

I am very proud to tell you that my daughter, Stephanie is raising money and awareness by running in the Leukemia and Lymphoma Society's Team in Training Marathon that will take place in Orlando, Florida in January. There is lots of information about the event and her participation it it at http://pages.teamintraining.org/md/wdw11/nstephanie Her committment is $3500.00 so if you happen to have a couple of dollars laying around that you don't need........well, just sayin'.

Stephanie has honored me by running this marathon in my name. I am touched to the point of spontaneous combustion and would love to see her achieve her goal. She has never run a marathon before so while this is a little out of her comfort zone, I say "Kudos" for stepping out and trying something new. I'm not sure I would be so brave.

As far as I am concerned - well, I am doing just fine. I have had a glorious summer thus far and have really taken the time to savor every moment. I have times when I get one of those scary reality checks, and I know that complications may come my way some day, but right now I just try to make each day count. I am so very blessed.

Happy Birthday To Me!

I just celebrated my 61st birthday on July 3rd and never thought I'd feel so happy to be growing older! Needless to say, I spent a lot of time reflecting on the past two years and all that I've been through. I'm grateful that it's behind me (hopefully forever) and thankful that I am now living a healthy and happy life doing all the things that bring me joy and fill my spirit with positive thoughts.

Thank you for your continued support and well-wishes and thanks for the birthday shout-outs too! Love to you all.