Cinco De Mayo!!! Ole!!

Hey Gang,

Well Kristine and I had an appointment today up at the National Institute of Health (NIH) in Bethesda, MD. When we met with the oncologist at WRAMC on Friday the 30th I asked for a second opinion which he was more than happy to accomodate. Our appointment today was with Dr. Howard Fine and I met with one of his clinical fellow's Dr. Katharine McNicol. Although we got on the road @ 0710 we ran into an accident at the 495 merger and only moved 2 miles in a little more than 40 minutes..gotta love DC traffic. Anyhow, after finally getting to this place..and for those of you who have lived in this area and understand Bethesda Naval Hospital the NIH is directly across the street. What you don't realize is the sheer size of that campus...we had to go through a vehicle security checkpoint where we were forced out of the vehicle and sent into to get a badge. Once we got through that then we needed to find the Clinical Center which again the sheer size of the NIH campus was overwhelming but we finally made our to the building and found parking. Now of course my appointment was set for 0900 and it is now 0900 and I still have to go to admissions to sign appropriate paperwork..they were quick to get me back and provide (me) another badge..and finally sent up to the top floor..(13th) to go to the Nat'l Cancer Institute clinic time hack 0940.

Once up there I met with Sandy Bresnick, Dr Fine's patient care coordinator and was quickly taken back for vitals and further checks and then placed in a room to await my meeting with Dr. McNicol.. She is a local girl who graduated from the UofMaryland and did her residency up at Boston Mass..and recently returned to this area. She came in asked that I share how this all came about which at this point is the same story you've all heard me over the past 3 weeks. She ran me through a series of motor skills tests and then took questions from Kristine and I. She was great and the time seemed to flow and move easily and before you know it was 11:30 or later. She would leave Kristine and I to go view the initial path report and MRI scans I hand delivered for today's appointment. While away Sandy came and moved us to conference room area where Dr's Fine and McNicol would eventually come in to discuss options.

Howard as he refer's to himself is truly one of the best the country has to offer when it comes to Brain Tumor's and although he is a very fit man he looked a little tired but he is also very small in stature..but given what he presented to Kristine and I he is much larger than life and extremely confident in his diagnosis. I must admit I've been blessed to be here in this area while experiencing this and the medical staffs have been superb.. Dr's Cooper, Cardoza, Fine, McNicol, nursing staff from the SICU (Jerry), Sgt Hale, Lt Yamada in Ward 58 and last but certainly not least Nancy Saxon I can't express my gratitude enough "Thank You".... Anyhow, I degress. Dr Fine and McNicol come in and again I get to repeat how this happened and the same questions of no seizures, headaches were not significant it was I just ran into a string of bad luck..

Dr. Howard which I will address him as from this point goes on to ensure Kristine and I are properly educated about what I have. He terms it as a "primary brain tumor" meaning it developed within the brain only and not a "secondary tumor" from somewhere else within the body. He explains there are 3 types of these tumors "astrocytomas, oligodendroglioma, or a mixture of the two". As I pointed out in the blog on the 30th the initial path report shows this tumor to be a "oligodendroglioma" and a WHO level II which for me at my age is the lowest level I could expect. Most WHO I's are found in children.. After further review of the MRI scans and the initial pathological report he is in concurrence with Dr. Cooper. Having come from Boston (Harvard) himself years ago he trusts a pathological doctor by the name of Dr. David Lewis which he is sending tissue to have reviewed and get a second opinion of his own. Dr. Howard is 99.9% sure it is an "oligodendroglioma" and is just as confident the mass has existed in my "grape" for a number of years if not decades.

Now that all the small talk is out of the way he goes on to explain treatment options for me.. A complete resection (surgery) is still not an option at this point but not anything he wouldn't explore in the future if it was required but just as Dr. Cooper mentioned he doesn't believe the rewards are worth the risk at this point and since this is a low grade II tumor I'll use the analogy of not wanting to wake the "sleeping giant". Therefore, he explains there are three viable treatment options.. Radiation in which they would focus on the area of my brain where the mass is located. Dr. Howard mentions there is a small degree of chance of losing some key motor skills but still a viable option. Drug therapy (chemotherapy) and what was good to hear is this procedure offers no risk of damage. There is also a secondary alternative to drug therapy in which the tumor itself has some key characteristics which he is sending off to have tested to determine if it indeed has them..then drug therapy would be another good alternative. The final option was one that Kristine and I hadn't even considered at all..(drum roll) No treatment what so ever!!! Dr. Howard calls it the careful wait and watch procedure.. Again I had no idea this could even be an option and was more shocked and surprised... Based on what he saw from the MRI scans and the first path report and based on his 22 years of medical experience he believes this is truly the path to proceed down. I'll go back to the "sleeping giant" analogy....based on the fact that I stumbled upon the mass he really seems to believe the tumor is inactive. As long as I'm willing to head up to the NIH once a quarter he'll do an MRI scan. He'll start a baseline scan next week but then 3 months later he'll conduct the first one and will continue to do so for 3-4 years on a quarterly basis and as long as there remains no change we'll move to 4 months for 2-3 years and then 6 months.. He seems positive that I'm going to be around for quite some time..and I can't explain the relief and pressure lifted off mine and Kristine's shoulders.

Some of you are probably questioning our approach and may seem to think we are running away from the problem. However, we honestly believe this is the appropriate choice for us at this time. My sister shared with me earlier via the phone that I've always got the option to change my mind..which I get but she needed me to hear what else she had to say and I'll paraphrase "if I were to start radiation I can't change my mind mid-treatment". Something I really didn't give much thought to but looking back on those words they speak volumes.. So I'm on convalescent leave for 28 more days and will sit at home taking it easy so I can return to work and determine what fate lies ahead of me on whether to retire at the end of November of 2010 or ask if they can't extend me to the end of March 2011 for pay purposes (21 years and few days) and allows me to get 3 MRI's conducted and as long as there is no change I can exit with a peace of mind. However, I will discuss with MSgt's Allwerdt/MSgt Smartsy and the retirement branch.

What to expect from me..well as long as the 'sleeping giant' lays dormant I expect to live a very normal life with a primary brain tumor that is malignent although not growing..I still have every intent of continuing to be the voice for this disease and raising funds for the brain tumor foundation.

I ask for continued prayers and support as we traverse what lies ahead. I will be honest every 3 months I will get nervous and as I've stated in the past will be waiting for the other shoe to drop but I am going in with a very optimistic and positive attitude.

So the next step will be to continue to monitor the blog site for a weekly update on my health and goings-on. Be prepared to support my fund raising goals and if your able join me at this years marathon as part of the Lance Armstrong Foundation (Grassroots) team to raise funds for brain tumors, more information on that will follow in the coming days.

Additionally, me and my handlers have found a sponsor for the next round of "The Gunny's Team" t-shirts. They will be of better quality than what we had this weekend and hopefully we can keep the costs down. Your support and following of this blog is truly appreciated and hope you continue to do so.

God Bless You all!!!!
JD