14-22 May Gunny Update

So much for keeping up with my postings but I'm sitting here watching "Tudor's" with Kristine and Jake and decided to use my time wisely and update what has been going over the past 10 days..

On my last posting I mentioned the 14th I would have my baseline MRI. However, before I did I met with a new friend I have developed since I was diagnosed with the brain tumor. Jillian has been a part of the "Race for Hope" since it's inception. She lost her father to a GBM tumor and along with her family made a committment to continue supporting the race and any other function which will help us find a cure or at a minimum provide options to doctors on treatments for patient. I had to go to WRAMC beforehand for some blood tests the chemo oncologist ordered. Once done I headed to Bethesda to meet Jillian for the first time..although we met up for lunch and had plenty of time before I headed to NIH we never ordered lunch because we just connected real well and spent the entire time chatting it up. She is someone I plan on leaning on for fund raising ideas but more looking forward to developing a strong friendship with Jillian and my family.
I left in time to get to NIH for my baseline MRI and went through the process of getting an IV put in me so they could put dye in my body during the MRI. I have to admit they stuck me real close to where blood had been drawn the day before so it goes without saying my arm was sore. Had to wait my but once I got in, it was pretty routine and once in the tube I slept while it the machine did it's thing. Note to self, on my next scheduled MRI I won't accept a 1400 or later time because of traffic around here in the beltway..although it being a Friday probably just made it even worst.

15th - So after some further discussion with Kristine we made the command decision to remodel the entire bathroom. I must admit I was shocked she was willing to do it but it will give me something to focus on while I sit at home by myself until I return back to work on the 3rd. We went to Lowes and picked out the tile for the flooring and walls plus picked up necessary tools I'm going to need.

16th - We get up have breakfast, then Kristine and I get our work clothes on to start our bathroom remodeling project. I have to admit when we started this I didn't realize how much stuff (crap) we had in that little room. Needless to say we emptied it out and started ripping up the flooring and tearing down the walls. After lots of effort finally was able to get the wash basin removed and although I had turned off the water at the shut off valve I had a leak on the hot water valve. Went to back to Lowes which is becoming a recurrent trip over the coming days.. Needless to say the one I bought didn't work and had to return because if I didn't I was going to have to be up every hour to empty out the bucket I had in place or I was going to cause a bigger mess in the basement area we just had remodeled 3 weeks ago. Anyhow, I purchased 5 feet of tubing which I placed over the nipple and then ran the other end of the tubing into the toilet.

17th - Finished pulling all the tile from the walls of the tub and went out to Home Depot since Lowes didn't have the shut-off valve I needed. Found what I needed and then went back to Lowe's to pick up durarock (cement wall board) I need to complete the project. Maddie was suppose to have her District softball game tonight but weather remains dreary/raining and cool and so it's been cancelled. Ripped out some drywall that needs replacing but I'm trying to be careful because I don't want to rip out more than I need to. Since Maddie doesn't have a game plus me being at home I'm on the hook to cook dinner as well so my day of remodeling is cut short.

18th - Early rain today but it quits early; however, dreary and cool so Maddie's game is cancelled again. I start working on getting up the sub-flooring and trying to avoid the destruction of the base flooring. Also had to read up on how to remove a toilet..an easy task but nasty endeavor. Once done and got it out the sub-flooring around it was all rotted out.. Finally got all the subflooring out and then noticed I was going to have to replace a section of the base flooring. In addition, I'm going to have to pull the tub out now..this project just keeps getting bigger by the day.. uuugghhh!!!

19th - Kristine left for Dallas today to take a class for an advanced property mgmt classification..going to miss her and especially on the 21st which is our 19th wedding anniversay. Kristine and I have grown up together and we both will tell anyone that marriage is a second job and we won't deny there have been some rough patches along the way but it has only made us a stronger couple. Kristine, I love you and glad we've made it this far and look forward to many more ahead of us. Maddie's district softball finally was played but unfortunately we ran out of inning's and lost the game.. We also found out this week Maddie was selected as "honorable mention" for district honors.. Maddie, your mom, Jake and I are so very proud of you..

20th - Today was a tough day..I have head aches.. not a head ache but sharp pains so not much getting done in the bathroom.. Kristine is gone so she can't nag to much.. :-)

21st - Not much going to get done in the bathroom again because there is a going away luncheon for my friend and my old contract project lead (Brian P) down in Stafford.. and then the kids and I also have tickets for the Nats/O's game..we also take our other son with us.. Mike Counts.. Between he and Jake those two young men have kept Kristine on our toes over the years... They have nicknames like "peaches and cream" and one that I won't share on the net but needless to say each summer they do something we get a laugh at much later but when we first find out I want to strangle them both. Fun day today.. Happy Anniversay Babe..hope your having fun in Dallas..

22nd - I get up early to get back to work on the bathroom..plus with Kristine coming home I need to show some progress :-).. I have a neighbor that is a general contractor and ask him over to give me some tips..plus I've been struggling for a few days to get the drain out of the tub..so I can get it out to get to the base floor. My neighbor comes over takes the special wrench along with my large ratchet and breaks it free with one turn..talk about feel foolish. Maddie decides to join me today and actually was a big help.... got the tub, cut out sections of the drywall that needed replacing, and actually was able to cut out a section of the base floor....Mom (Kristine) gets home..glad she's home but she is tired..appears she had some fun the night before and then with an early morning to catch her flight she is feeling the effects of not doing this more than once or twice a year..

7-13May Gunny Update..

Hello All,

I've been negligent in updating the blog. Therefore, I'm going to try and make an update for what has happened over the past week.

7 May....it was a sad/but also a day of celebration for one of our own.. Col Chudoba was officially retired this day. He hasn't left our MC Intel though because he was recently selected as the A-DIRINT.. His ceremony was well done and his remarks were well received. I must admit I was taken aback when he paid tribute to me and my current situation... Sir you are an inspiration and best of luck with your new position. Additionally, I put my Dad on a plane and sent him back to Texas it was sad to see him leave but he had been here since the 10th of April..

8 May....Maddie my daughter was asked to the Sr. Prom on the same day as my surgery, so we spent a good portion of the day helping her look for a dress. Unfortunatley, I got tired around 3 in the afternoon and had Kristine and Maddie drop me off at home before they headed out to Tysons.. I must admit that was a good thing because by the time they got home later in the day Mom was in a tizzy.. My kids don't realize how spoiled they really are and Mom was done although Maddie got the dress she wanted..not sure how that all worked out :-)

9 May...got the family up and we went to Mass and since it was Mother's Day we went out for lunch to a Mexican restaurant called "Chevy's".. we also went over to some close friends..Ken, Mary, Chris, Caitlin, and Mike Counts for dinner that evening.. 1st Margarita since before my surgery..it was awesome but kept it to one although I wanted more..

10 May... First day at home by myself since all this happened.. Received a phone call from Nancy Saxon the nurse practitioner for Dr. Cooper letting me know the 2nd pathology report was received and asked to come to up to WRAMC. Called Kristine at work and let her know and told her I'd call her once I got the report. I needed a shower and by the time I hit the road I got an email from Kristine telling me she would me at WRAMC. Thanks babe for being there... Once there we got to see Dr. Cooper and he explained the second report did confirm the tumor is a WHO grade II "oligodendroglioma" and it has some chromosome traits which chemotherapy alone would be a good option. I explained I had been to the NIH and met with Dr. Howard and explained the options for treat he suggested and what we had chosen and he was in concurrence at this time. He did however want me to see a chemo oncologist which I met today (13May)..

11 May... Busy day today... had to do grocery shopping, finish and fold laundry.. worked on a leak in our master bathroom but in the process made a mess of the tile.. Long day but productive day although it took me 2 plus hours at the commissary..

12 May... Still getting up early but once kids and Kristine left for work I decided to get back in bed and get some much needed rest. When I got up I called Kristine to explain I wasn't going to be able to finish the bathroom repairs due to some soreness and extreme fatigue.... Maddie doesn't have a fourth block class so she comes home early and I decided to take her to lunch as well as pick up a water board backing for my shower..although I won't do anything until Saturday. Maddie and Jake both have their final softball/baseball games. However, since Maddie is on varsity she will play in the district tournament and hopefully beyond. Jake on the other is done and now focusing on getting "swoll" for football in the fall.. I must admit I'm impressed with his desire to get big over the past few weeks and based on him going through a growth spurt at the moment I think he will be a big boy.

13th.. Went up to WRAMC to meet the chemo oncologist and he just provided me some additional information and was pleased to hear I have met with Dr. Howard and he too is in concurrence with our "careful watch and see" approach. Drove down to Quantico and met with my old TEG team and then caught up with Capt Mok at a meeting on some initiatives we are exploring for Rapid Prototyping..but it appears this was lacking in what we would be interested in. Got home around 3:30 -4:00 and was exhausted more because I was up until the wee hours of the morning and on the road by 0710 to make my 0900 appt..so I tried to take a nap but not with much success.

I have my baseline MRI scheduled tomorrow and will provide a new update later tomorrow night..

Take care and God Bless..

JD

6 May - The Gunny

Today was uneventful. I really took it easy today and did a few chores around the house but nothing to taxing. I did receive a call from Sandy of the NIH informing of the first scheduled baseline MRI which will be next Friday the 14th in the mid-afternoon. Then my second and first quarterly MRI goes at the end of July..



As I pointed out in yesterday's posting I won't deny I'll be nervous each time I head north for the MRI's and next Friday is no exception. I find it important to express the "tumor" is present but at this stage it is the belief of Dr. Howard and his staff we just take a very careful approach and see how long I can go before we see any changes.



On a lighter note, Kristine and I took some time this evening and walked our dogs Titan and Maka for about 45 minutes. I think they were more tired than either of us. I'm going to sign off for now because I have to be up and out the door by 0500 to get my Dad to Reagan Nat'l airport so he can make his way back to southeast Tx....he has been here since the day I was first admitted to WRAMC on the 9th of April. Thanks "Old Man" for being here and helping out the family during our time of need and will see you again soon.



SF

JD

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

Race for Hope photos

2May10 - The Gunny

Hey Gang,

I tried to make a post to Kristine's facebook page earlier but didn't realize you could only use 420 characters and as most of you know I like to be long winded so I made it short and sweet. However, I thought I would follow-up here on the Blog and say some much needed Thank You's...
First and foremost..Sarah Tozer and April Ludtke..words can not express my gratitude for your efforts and helping "The Gunny" find his voice for this disease in addition to helping Kristine keep her sanity throughout these past 22 days..
To my Marine Corps family (Maj Brian Rideout and GySgt Chris Jourdan) thank you for passing my notes to your friends, family, our Intel community and to "every clime and place" and passing on the "Race for Hope" fundraising site and helping me understand that although we started with some very humble goals that 20K truly became a number which was attainable in such a short time. To others who I have never met before thank you for your support and your generousity is greatly appreciated. To my brethren in Afghanistan, Beale, Okinawa, and everywhere else within the globe "Thank You"...
My solemn promise to each and everyone of you is that I will not quit nor let any of you down for all the support you have provided.
My next goal for raising funds will be this years MC Marathon. As I've stated in a previous blog I intend to raise funds twice a year..the yearly "Race for Hope" and this year it will be the MC Marathon.. I've solicited the Lance Armstrong Foundation "Grassroots" asking if they will help sponsor me and given the fact we have raised 20k in a short 22 days with 183 days remaining to the MCM I'm going to be aggressive and shoot for a 100K goal and I hope I can continue to count on each and everyone of you for your support.

Thanks again for all your efforts and support throughout these past 22 days...

SF
JD

From The Gunny's Wife

Just real quick...for those of you that were at the race and took pictures, can you please send them to me? I would like to make a scrap book for this event.

Thank you :)

From The Gunny's Wife

Today was a great day. We attended the Race for Hope with our family and friends. It was wonderful to see all the supporters that came out and walked with us. It was also very nice to see friends under a different circumstance other then a hospital waiting room. It was good to laugh, catch up and just be around people that are a part of out lives.

The race raised for 11 million dollars and there were over 10 thousand people at Freedom Plaza. It was interesting to see the different T shirts that people were wearing for the loved ones that have passed or continue to fight. The race had a wall of hope that was filled with the young and old and their plights with cancer. The pictures that impacted me the most were the young children and the teenagers. It was sad to see that such a young life can be taken. It makes me thankful that I have had 19 years with JD and hopefully many more to come.

I want to thank all the people that reached out to me since my last post. I have had people share their thoughts with me that have helped me a great deal. I want to thank Connie Hawkins (Sarah Hawkins Tozer's mommy) for the email. It helped me put my feelings in perspective.

May 1st..

'Race for Hope' is tomorrow gang.. I look forward to seeing everyone that can make it out and support "The Gunny's Team"...We've easily surpassed our 20K goal and Kristine and I are extremely humbled by your generousity and willingness to support.

SF
JD