Sunday, April 21, 2013

Face of America Ride and Race for Hope - DC

In one of my earlier posts informing my followers of the new activity with "Timmy" I also stated I was going to rededicate myself to staying more active/working out.  I renewed my membership to our local recreation center in late February and can share since March 1st through today I've only missed 2 days of working out.  The first was when I took a red-eye flight back from Hawaii and although I arrived before noon that Friday, Kristine and I had our taxes done that day and by the time I got home I was exhausted.  I would miss another Friday workout to spend some time with my beautiful bride.  Needless to say I am getting stronger again which is what I wanted to happen so if I do have surgery I believe being in shape will aid in my recovery.  Along the way of getting back in shape not only am I losing weight I'm also joining a Marine brother (Brian W.) on the Face of America Ride which begins at the Pentagon on Saturday the 27th ending in Gettysburg on Sunday equating to 120 miles in 2 days.  I've been riding but the longest I've gone of recent is 25 miles so this weekend should be interesting.
The the following week we have the Race for Hope and with the help from family, friends, and strangers alike "The Gunny's Team" is going to reach it's goal of 10K this year.  To all that have donated thank you very much for your support. 
I've also purchased new t'shirts this year and if you wish to get one please make a donation of $20 dollars to "The Gunny's Team" and let me know and I'll get it to you.  This year's shirts are navy blue with white print screening and I can honestly say I think this is the best looking shirt we've had to date. 
There are many of you which wear past years shirts and post pics on Facebook and I can't express how touched I am by your continuous moral support.
I'll post pics from this weekends ride and will give you an update.

SF
JD

Wednesday, April 3, 2013

MRI results (Good news but still unsure how to proceed)

Today was the follow-up appointment to get the results from the MRI scan I had on Monday afternoon.  I can share that I received the news we could hold off but the Dr also opened the door for me on when to do it.  Her first comments after coming into the room was the tumor was stable and the hot spot where dye had leaked from the February scan was not as prominent and looked to be smaller and admitted she couldn't explain why.

Some of you are probably thinking that is good news and I agree; however, she also shared the bridge between the left and right frontal lobes indicates the tumor is migrating to the right side.  This was something Kristine and I were made aware of when we first learned of the tumor three years ago.  Unfortunately, it's not been a major topic of discussion in previous appointments at least not what Kristine or I can remember. 

Nonetheless, today was more about focusing on this new piece of information and leaves Kristine at a lost on what to do.  The Dr's position is to still have surgery its just when.  Of course Kristine and I were at odds in the room with the doctor and struggle on what the right answer is or course to follow regarding my treatment.

Before I left NIH today I went back and signed the necessary paperwork to have my scans and notes sent to John Hopkins and going to get an additional consult with Dr. Holdhoff who I met in March and get his opinion.  If he has a different opinion and suggests to continue to monitor I'm most likely going to stick with his opinion and most likely move to John Hopkins for further monitoring and treatment.  If he agrees to continue with the path of surgery then I will it will be just a matter of when. 

Most would think I would be excited to have gotten the news today and to a certain extent I am but I'm also perplexed because I'm struggling to determine what is the right course to pursue.  If I had a heart disease or broken limb there is a set of procedures which doctors all over the world follow.  However, with this disease it's on a case by case basis and although medicine is a science there is not specific set of procedures on how to deal with brain tumors.

So I'm off to bed to wonder about this even more.

SF
JD

Sunday, March 31, 2013

Timmy the tumor is being bad :-( again..

Hello Friends

I sent a mass amount of emails soliciting support for this years "Race for Hope" and for those of you that reviewed the "Gunny's Team" page and personal page I mentioned that my last scan indicated the tumor is displaying a small hot spot which is leading me back into surgery.

Kristine and I have been thorough in gathering information and the resounding message from every doctor we've discussed my case with is to proceed with surgery.  Dr. Cooper who conducted my first procedure will be present which provides a great deal of comfort to both Kristine and I.  After discussions with him and Dr. Park who will be the lead surgeon this time indicated he is only going to go after the tissue where the dye leaked from my last MRI.  Surgery on the brain is of concern but given I've been through this in the past I'm confident I will bounce back just as I did the first time.

Now the question many may be asking is when will this procedure occur.  That is dependent upon the results of an MRI I'm having on 1Apr13 which I will get the results on the 3rd and post the findings that evening.  My desire which I've shared with the medical staff is I want to wait until at least the week of May 20-24.  Some are asking why do I want to wait for so long.  There are a couple of key reasons..
  1. I must admit I became complacent since my retirement and comfortable with getting the MRI's on a quarterly basis and for 15 months it was just something I was going through without much thought.  After getting the news on Valentines day, it took getting that news for me realize no one ever defeats death.  However, I also realized I'm not doing anything to help keep it at bay with regards to my diet and weight control.  So I updated my yearly recreation center membership and have been getting myself in shape so when surgery is conducted I will be bounce back as quickly as I did in 2010. 
  2. The request to wait until May allows Maddie and Jake to finish their spring semesters uninterrupted.  If I have to have surgery in April, Maddie is adamant that she will be here.  Jake is easier since he's only 3 hours away and can take a train but with Maddie at Tx A&M it will require a flight which is not difficult but want to get cheapest rates possible.
So as long as the results of the MRI doesn't indicate significant growth I'll be able to hold off; however, I've also agreed that if it's indicating it's agressive the procedure will occur in April dependent upon the surgeons and any additional testing they may require.

The irony behind all this is for those of you who know me and see me on an regular basis wouldn't know that I have a brain tumor and even when the results were shared in February it's not like I have any visible signs.

As always I keep a very positive attitude and confident this is just another step along the path of what lies ahead.  Please keep Kristine, Maddie, Jake and I in your thoughts and prayers.

Stay tuned to this blog as I will update with what we find out this week.

SF
JD




Sunday, July 24, 2011

Finally "retirement"

It’s been a long 8 months since I last updated the blog and have had recent requests to do so; therefore, I felt an obligation to satisfy those requests. If you’re reading this it’s based on receiving an E-vite to my long awaited retirement ceremony. I realize not all it was sent to can attend but I did want you all to know how much of a significant impact each and every one of you had in my life, career, and more important become a part of my family.

So much has happened these past 8 months. In my last blogs I had just been diagnosed with complex partial seizures but based on the results from my November scan the tumor was still dormant. I would go to Texas for Thanksgiving where my father and brothers would hold a retirement party for me which had been in planning for months prior to finding out about the tumor and it was an event that went off without flaw and all who could make it had a great time. Kristine and kids had an opportunity to meet some old friends of mine from high school as well as see some old friends from our early years in the Marine Corps. Some are asking why a retirement party last year…well before I got ill I was slated to retire 30Nov10 but of course that all changed in April of ’10.

We would celebrate Maddie turning 18, Christmas, and bring in the New Year just waiting for the medical evaluation board to convene and determine my fate. Unfortunately, on my next quarterly scan in Feb ’11, the scans would indicate there was some slow subtle growth but what concerned my team of doctors the most were some hotspots in the center of the mass of the tumor. The fears which Kristine and I shared in our earlier blogs were now becoming a reality. What we once believed was going to be a long and healthy life together was once again in question. The appointments up until this day to get the results normally had only lasted no more than 90 minutes but this day would become another long day in what is still a very long road ahead of me. We were advised since there were changes we needed to look at treatment options. We would visit with a radiation oncologist at the NIH to discuss the option and since the tumor has two chromosome deletions he advised us to hold off on radiation at this time and save it for a period down the road. The rationale was because of these deletions it made more sense to go with chemo treatments because all signs indicated the tumor would be receptive to the treatment. So towards the end of February I would be come my first phase of chemo and just completed my 6th phase on Friday the 20th of July. I take the pill form of chemo called ‘temodar’ and can honestly say I’ve had zero side effects. As long as my blood and liver enzyme counts remain normal I’ll remain on chemo for as long as my body can withstand it. I have a set of scans scheduled for August which will hopefully show signs of shrinkage in the hot spots.
My medical evaluation board did get pushed to the right because of the findings in February but in mid-May I would finally get the call from my physical evaluation board liaison officer (PEBLO) informing me my findings were in and needed me to come see him. For those of you that have served in the service or worked for the government we all know how much red tape we have to maneuver but I can share I’m glad I fought for what I believed I deserved because in the end the findings were 100% permanent disability retirement list (PDRL) from the DoD and 100% rating from the VA with concurrent receipt. It would take another few weeks for the board to deliver the findings to the command once I had accepted them and since mid-June I’ve been on a hectic pace trying to prepare for retirement.
During this timeframe of waiting though I’ve continued to work for MCSC and living each day for what they bring. I participated in my second ‘Race for Hope’ and with the help of family and friends we raised just shy of $7,000 and in less than 15 months we’ve raised in excess of $32K for the National Brain Tumor Association and Accelerate Brain Cancer Cure a feat that I’m extremely proud of and thankful to all who continue to support ‘The Gunny’s Team’.
Kristine and I watched our Miss Maddie graduate from high school with honors and be accepted to TX A&M for college. Jake is a rising senior this year and will start his own college adventure next year.

Which brings us to our current timeframe..which is 22 July 11. I started PTAD/TmLv on the 15th of July once I got the disability branch of HQMC to move my official retirement day back to 31Oct11 vice the 30th of November. Maddie and I left DC yesterday to come to Tx to find her a place to live in College Station with Kristine and Jake to join us on the 29th. I have an Uncle & Aunt celebrating their 50th wedding anniversary which we are attending and then the family heads to New Orleans on the 31st to catch a cruise for 8 days and 7 nights (Honduras, Belize, Costa Maya, and Cozumel) I can get use to this retirement stuff.

When we get home we have a couple of weeks before my retirement ceremony and then Kristine and I bring our baby girl back to Texas to drop her off for college. I also have a job lined up already as well and will begin the second week of September.

So there you have it folks a quick rundown of what has and continues to occur in the life of “The Gunny”. As aforementioned I hope all can make the retirement but I understand due to locations it may not be feasible but do know each and everyone of you have been key factors in my life and I just wanted to share it openly.

God Speed and God Bless
JD “The Gunny”
You can update your contact info for me with the following:
Email: carawayjd@gmail.com
Phone: 571-882-0726

Sunday, November 7, 2010

Post NIH, Scott's visit and MC Ball Updates 3-7Nov

Well Gang I didn't follow-up as I had projected on the evening of the 2nd but did want to let the masses know what transpired with Dr. Fine and his staff on the 3rd of November.


Bottom-line, no new change to tumor as I had hoped and shared and although the PET scan taken while I was in the hospital in late September did show some oddities Dr Fine and his staff believe it's most likely related to the partial seizure I had. Oh btw they did confirm/validate based on how I described my behavior those days within the hospital I mostly likely did have a partial seizure despite how subtle it may have appeared. Additionally, they did share the tumor is the key catalyst to having seizures and now that I'm on the anti-convulsant medication (Keppra) they believe as long as I stay on it and don't stray from taking it I should continue to do well. Anti-convulsant...makes it sound as if I'm really all screwed up..but I can attest I feel fine..

Anyhow, Fine's staff shared the treatment plan will remain the same which is the serial MRI every 3 months with the addition of a PET scan done on the same timeline. The doctors did share the PET scans are helpful but the MRI's provide them the most detail on what is going on in my noodle.. If I remember correctly they seem to think the PET scan should revert back to the baseline PET done back in April prior to my surgery and which will further validate the seizure..so 3 more months..



4-5 November..

Getting to and from work this week has been difficult with Jen out in sunny Hawaii snorkeling and working on her tan. I originally thought when I was told I couldn't drive for six months it was going to be pain to get to and from work but working for Jen and her desire to help Kristine and I made the first month seem like it was no big deal. She replaced Maj Brian Rideout who I have the utmost respect for and she has her own style of leadership and has reached Rideout status in her own way. I was able to get rides amongst the medical appointments but with Jen and I on the same team my day is not as rushed because we are both work-aholics and I don't feel as rushed as I did this week to leave at certain times.

My best friend from high school (Scott Hooper) was in this area this week getting some training for his job and was able to stay another day and spend time with Kristine, kids and I. We convinced Scott to join us and freeze Friday night as we watched the Edison football team get defeated by our rival school.. It was good to reminisce with you old friend although, we can never make up for lost time it was good to see you and share old stories. I may have left Krum but I've never forgotten what you and few choice others did for me to get me to the other side. I'm proud of you and Donna for what you've each accomplished and will make a more concerted effort to keep in contact with you. I love you brother!!!

After we dropped Scott off at airport, Caraway Clan got all dressed up in formal dresses and black tie tux's to attend the Marine Corps Systems Command Ball. We also had as our guests Ken, Mary, and Michael (Jake's pal) Counts join us... I hope you folks enjoyed the evening. It's important to note for the readers their oldest son Chris is a young Marine Sergeant grunt currently serving in Afghanistan.. Chris, stay focused, keep your head down and get home soon Marine..we all miss you and are very proud of you. Ken and Mary also have a daughter Caitlin who is a senior at App State that plays field hockey. Unfortunately the same weekend I had the seizure Cait tore her ACL/MCL while playing. Cait hope your knee is healing and just make sure your not pushing it...I understand the desire to feel normal but if you want it to regain full strength let it heal appropriately. (I know I need to follow my own advice):-)

Well gang that covers it as Sunday football is preparing to start.. Go Colts.. what do the ESPN analysts know??

Scott if Jerry Jones ever sells the team I'll be back..

Always Faithful,
"The Gunny"

Tuesday, November 2, 2010

The Gunny's Post MCM update Nov 2nd

Hey Gang,

Well my fifth consecutive running of the Marine Corps Marathon is done. The run was held on the 31st (Halloween). I want to publicly give Thanks to Bill Rysanek a peer but more importantly a good friend who ran with me side by side the entire way and although I know I would have finished without him he was instrumental in getting us to our finishing time. He is a very strong runner and if I had listened to him before we started we probably would have broken the 4 hour mark.. official finishing time for us was 4:03:55.. finishing a marathon is an accomplishment and I'm happy knowing I did it this year within 6 months of having brain surgery and my recent "complex partial seizure".

Additionally, I want to Thank Brian (friend and mentor) and his wife Emily for their support to "The Gunny's Team" and more importantly a big congrats to Emily for completing her first marathon..,.job well done..and hope to see you out there again.. the pain eventually goes away and hope you now have the marathon bug...

As I mentioned earlier I persuaded Bill that I wanted to shoot for a 3:40 finish and for 20 miles we maintained an 8:24 min per mile pace but after 20 miles I started to feel it and the last 6 were nothing more than just hanging on and finishing..which was never in question.

I ran into GySgt Jeff Cooper, another good friend, who is currently stationed in Okinawa but I guess is attending a school here in DC standing amongst the crowd between 23 and 24 miles,..what is significant about this encounter is that I convinced Jeff and another mutual friend Jason to run the inaugural Marine Marathon in Afghanistan last year.. Jeff was funny because when we first were contemplating doing it we'd go out for a PT run of 3-4 miles and about half way through it all he would just say screw it and walk back to the base camp.. I was able to twist his arm hard enough to get Jeff to join Jason and I run it at Camp Leatherneck/and Camp Bastian. Jeff is a small person but strong as a mule when he needs to be and surprisingly enough he ran a respectable 4:04:33.. so after seeing him in the crowd and stopping just long enough to shake his hand seeing him gave me the motivation to keep pushing because I knew if I didn't beat his time from last year I'd never hear the end of it.. Anyone that knows Jeff in our Marine Corps circle understands he is a joker..and I would have never heard the end of it.. 38 seconds Jeff..you were so close but even with a tumor I still have what it takes...
Anyhow, I digress..as I mentioned I persuaded Bill to run a pace for 3:40 and if I would have just listened at the start and held back a little more in the beginning we probably would have broken the 4 hour mark..
Kristine and Maddie hopped the Metro around the Virginia and DC areas tracking me along the course..it is always fun to recognize a familiar face in the massive crowds..ladies you'll never know how much your support means.. For those who are asking what about Jake my son..well I know he was there with me in spirit, based on how cold it was, the large crowds and the length of the day we made a decision to let him stay at home and do laundry...may not seem fair but considering how he and Kristine are so much alike he would have pushed her buttons and made it no fun..btw he did a great job with the laundry...Thanks Lil Man... I love you...

I have my second quarterly appointment with Dr. Fine tomorrow and looking to forward to hearing what he has to say about my recent hospital stay and results from the PET scan plus the serial MRI I had yesterday.... I don't believe the tumor has grown, no new bleeding, or movement, but the PET scan may show otherwise so I'll update tomorrow once I know what the next steps are in my future.

Always Faithful..
The Gunny

Tuesday, October 19, 2010

The Gunny 19Oct-27Oct











Faithful Followers..


The last two days at work..no the last month if not longer have been as hectic as they've ever been. When I was on a different program I worked hard but this new effort is truly testing me and my co-workers. I've got my Dad and other friends telling I need to slow down but I can't. I understand I'm sick but as I've said in the past I don't intend to let this define me. Not to mention I feel whole when I'm working. The difference between what I'm doing now and what I've done in the past is the level of oversight we currently have being directed our way. The efforts we are looking at providing to operational forces is truly leading edge technology and I'm excited about it if we can get all key players to align and work to a common goal.


I started this posting on the 19th and as the aforementioned paragraph states I am engrained in my work. But based on the Marine Corps Marathon being this Sunday and me finally getting the second version of the "The Gunny's Team" t'shirt finally screen printed..I needed to make some time to get this on line.. Plus solicit for more assistance in my fundraising efforts.


Before I get to far down the path.. I do want to update my goings-on for the past week as best as I can remember..


Most importantly is the kids had their homecoming weekend this past weekend. Football was Friday and Saturday was the big dance... Maddie had a date and had been asked in grand fashion weeks earlier and as for Jake he waited until Thursday to ask a young lady. Now the fun part was Friday Jake decided to be a horse's butt in school which I won't go into details but it was good enough that warranted his mom and I to punish him. Luckily for him he had a date or he may not have gone to the dance either. Nonetheless, both kids went with their respective dates and based on what they shared a good time was had by all.
Sunday was a lazy day watching football and doing regular chores..

Monday and Tuesday though it all started back over again.. First thing Monday I spent going to a VA medical appointment as part of the med board process then had Kristine drive me down to Quantico for work which was a day and half summit for the effort we are currently pursuing. Needless to say very long days but by the end of Tuesday we came away with some much needed information so we can continue to move forward and develop a critical path to get us there..today was no different of being stuck in more meetings and away from the office..hence why I'm finally getting around to this at this late hour.


I've attached some photos to this post which depicts the new t'shirt. As a reference, both kids are wearing adult smalls.. Jake is 5'10 and weighs 150..and Maddie is 5'6..
If any of you are interested in getting one please leave a comment with how many you want, size, and an address. Kristine has a paypal account for Ebay which we are exploring to determine if it can be used to pay for you order. If interested and want to support, the money will go towards the fundraiser.. Shirts are $20 each or 2 for 30. If you order 3..you'll still have to pay one @ the $20 dollar rate but would get the other 2 for $30.


Always Faithful
The Gunny