Lately, I feel like I've been doing a lot of talking; about my dad, my daughter, his fight with cancer, our family, his journey, today, yesterday... I've been on the verge of tears, okay, have been quietly dropping tears via text messages to my closet friends, with a froggy throat on the phone to my husband and basically anytime I sit down at my mac to type a post.
This morning went off better than I could have planned... I sat on the edge of K's bed at 7am, rubbed her back and told her I was ready for my first day of school, to which she laughed and told me is was HER first day and that, "that was a really short night of sleep." Which of course I already knew because I went to bed at midnight replaying the moments from the last 5 years in my head (ugh, I'm tearing up right.this.moment). The moment we first set eyes on her, the 13 days we visited her in the NICU, the exact moment I held that tiny folded flag up to her and took the photo, and the first time my mom got to hold her at 7 days old. Then I remember the first time she fell asleep on my dad, when she was a month old and how he said it was the greatest day. There have been a thousand firsts in our lives since those days, all of them passing, without knowing if my dad would be around for the next one... and yet here we are. Her first day of kindergarten.
Below are excerpts from my dads Caringbridge account... started on April 16, 2009.
May 28, 2009,
“….yes, I am tired, and have side effects, but see them as a small impediment to my quality of life and believe that pain is worth developing an even more positive outlook i have on life than i already do. all of my conversations are richer and my day to day experiences are generally fantastic. I have met great people which i would have never known. when told by medical professionals you will die within 20 months, even with radical treatment, it will alter your outlook. I would ask that all of you think this way too...let's say you had 20 months to live....really, how would you act towards others....what would you do.....what if you knew you would live longer and beat the odds, as I will…”
August 1, 2009
"…Jane is my guiding light. My girls are well, and they know they must take care of their side of life so that I dont need to worry about them. As you know, kimberly finished her graduate work at George Mason, and will enter the workforce soon - after she chills for a couple months. Jamie and her Beau are doing well in Palm Beach and making a go at working, living, and enjoying the Florida shores. Jamie is our brilliant wild flower looking for the perfect job ( sleep all day for 100k a year) and loves her dog and her man. Kimberly enjoys embalming bodies at the local funeral home when she's not working out ( man are we crazy hermanoids or what!) for know I think she will drive a beer cart at the local country club.....all that edumakation coming to fruition! …
..the conditions couldn't be much better for my survival, and it is simply up to the grace of god as to whether I fully recover. this must be the truth, but also I/we must do everything we can to prepare. I am ready, but this is major surgery and it does not come without risk. so thanks all and dont worry 'bout me, so let's pray for the 18 yr old sons and daughters oversea's who really haven't lived a full , robust life and get them home safely....”
Nov 4, 2009
"Hi there- its Jamie..
Mom called 15 mins ago with GREAT news.. the surgery was SUCCESSFUL and dad is currently in ICU….
….We all want to say thank you for your thoughts and prayers.
As soon as I hear more I'll update again.
Xoxo- J”
Nov 5, 2009
"….Dad says, "I'm sore, but its a good sore. We are going to beat this thing. We need to be cautiously optimistic - the next 3 days will ultimately determine whether it's all been worth it. The doc says hes happy with outcome." ... Doc says hes not out of the woods yet.. but Dad says," at least I have a map and compass."
May 20, 2010
"….Well, it's been six months since my surgery and four months since I stopped my chemo - 636 hours, I believe, in total. Since then, I fell out of a plane at 11,000 feet on a military tandem parachute jump, spent 30 days runnin and gunnin in B-dad, flew in several different helocopters and planes and ran 3-5 miles per day last month in 100-105 degree temps in Iraq. so, I am getting back to my way of livin' thank god and feeling pretty good...."
Jun 26, 2010
"….It's Official! I am a grandaddy! Kenley Jane Hinkle, born 3+ weeks early - on Father's day - just for me. We've held back a bit, as she was in intensive care on a ventilator for 3-4 days, but seems to be gradually improving each day. jane is there now, and jamie is doing well. 6.3 lbs, 20 inches, a head of hair, hair on back, lol, long wirey arms and an attitude. ( some may have called her a spider monkey, sshhhh). really she is absolutely gorgeous straight out of the womb.
i hope to be around for a while, statistically ( but you know how stats are) we're looking at no more than 5 yrs ( for a normal person) and perhaps 7-8 for a superman. I'd like to think I am the exception and with you all by my side, with jane, New grandbaby, and Kimberly beginning her career teaching 3rd grade ( go aunt bo!) , there is much to live for..."
(When garebear did his first tour in 2004 he gave his girls these flags with a little note before he left.. these last 6 years have been one hell of a ride... and its not over yet. i know kenley gets her fight from you.. we love you so much. this ones for you grumpa! xox JJ)
July 12, 2010
"….I am leaving tomorrow to see my first grandchild. the last year and a half has been a struggle for sure, but being able to hold a grandbaby is a feeling that has kept me going. I hope it will continue to give me strength.
aint out of the woods yet, but have a map compass, and now a guiding light, albeit a small one - namely Keney Jane..."
September 5, 2010
My initial prognosis was confirmed as stage iv colon cancer metastatic to the liver and I was given 18 months, even with treatment. 18 Months ended last Tuesday night.
First mission accomplished!
Regret the posting delay, but I guess I was a bit superstitious. As mentioned earlier, now my new prognosis is a 50% survival rate @ 48 months.
Septemeber 10, 2010
"....good night gbaby Kenley. I am praying every night to take you to kindergarten, as i bought you a camouflaged back pack with a red/white/blue bear I got in iraq before i was medi-vac'd...."
Novemeber 11, 2010
"...like defeating the japanese in ww2, my cancer struck like pearl harbor, and we lost part of colon and liver, but we didnt give up.
we then pressed hard making sacrifices - like side effects- and landed on many unknown islands in the south pacific losing good men and women. but in the end we won those battles, made airstrips and ultimately won the war of attrition. i think me and all of you are winning tis godforsaken cancer war one prayer at a time. when we fly close together in a tight formation, we use the wind beneath each others' wings to stay aloft. this is the case. thanks all! I wont let you down. thanks god for my wife and girls, they make me want to live.
sincerely, GRANDPA GARY hahahahahahahaha.
stay tough baby kenley, kindergarten is one day closer for us!"
December 28, 2010
Anyway, I reflected on what is important and after holding Kenley and watching both my daughters being successful at work and family, it reminded me that I simply cant give in to this cancer. I have to take granbaby to school and also ensure a safe terror-free world (or neighborhood at least). To this end, we'll keep plugging along - as the side effects are now second nature and that's life. Thanks all for keeping me pumped up. I am certain most of you reading this are making resolutions as well.
We can only do so much, but positive mental attitude, continued spiritual growth and conviction is/has/will continue to fuel my/our survival. I feel as though I will be around a while. Initial prognosis of 18 months surpassed. My last prognosis stated 50% survival rate of 48 months - that was 7 months ago. So while stats are simply stats, I think i'll beat the odds.
June 7, 2011
"...it may not be the best decision to travel from a purely chemo standpoint, but for psychological reasons and to continue to maintain high standards of personal and professional goals, I must stay focused on something larger than myself and not dwell on the negative. I think that is why I am still here - and appreciate again, all the support to date.
...and of course, everyone. thanks folks, so i will keep in touch, but for now - nothing for a while, as i am foregoing chemo for now and will get scanned in a few months."
July 18, 2012
MY lifespan is still uncertain, but doctors initially said 18 months in March of 09. now, they say, I could be that 6% that make it, and with faith, support and a positive mental attitude going for me, as well as good responses to the marvels of modern medicine, I could slip through the crack to death...as I have yet another grandbaby to walk to kindergarten in 5 more years.
October 27, 2012
The truth: Chemo slows you down, makes you feel tired, you lose a sense of urgency. On my regimen, you cannot drink anything unless room temp. The first bite of any food source causes unbearable pain in the lower jaws and teeth that brings tears.Your fingers are tingling to the point where you cannot touch anything, esp cold, as it is like touching a car battery. But of course you much touch something, so you just do. You get varying degrees of nausea and heartburn. The chemo turns your digested food into paste, and constipation is deadly. Eyesight and hearing also are affected.
But most of all, I miss being a better, more active person.. as I often just want to sit on the couch and chill. Everyday you must remind youself NOT to feel sorry for yourself and do not entertain depressive thoughts. these are words from POWs.
April 2, 2013
All said, your caring bridge entries will help me through. I had this stage IV B stuff now for exactly 4 years this month. Remember they said 18 months even with treatment? and only 8-12% survival over 5 years. so,I am pretty sure I have a fifth year "in me". you all have been with me...sharing the burden.
Grandbaby Kenley will be three soon and my goal was to walk her to Kindergarten...so I gotta hold on...now with Gavin being 10 months, I really gotta hold on. Man what a journey. Today, I dropped Jane off at the airport -to go see Jamie, TJ and Gbaby Kenley in Florida. When we hugged before walking away into the airport, it was 650 AM. the sun was just coming up over the treeline, a sunrise. I said Jane "wait one second" lets look at the sunrise and say...thank you". She arrived safely.
I do have a question: If you could know your fate, i.e. when and how you would die, would you want to know?
I can only say while displeased with my prognosis, my days alive are so very appreciated. Maybe that's the message.
September 1, 2013
Yet, my brotha's and sista's! I say again, my brotha's and sista's! can ya gimme a ...AMEN, lol. no really, I dont think anyone would know ...if they didnt know. I continue to work full time, and now ride a motorcycle through the northern virginia crazy traffic. I am definitely fatigued - which is the appropriate term vice weak or tired. Chemo fatigue. But.... I am over what, 4 years and two months. Remember only 10% are statistical survivors after 5 years. I am confident I am in that group thanks to you all. and yes, grand daughter Kenley is going to begin some "pre-schooling" so I am still hopeful I will walk her to kindergarten - my goal all along. But now I have grandson gavin, aka the gavinator, aka meatball who needs me to throw a football around too...and Jamie has another one in the oven! oh my, now I really need to stay alive. My daughters Jamie and Kimberly continue to be my shining stars in all of this. I am so proud of them. I think they are learning a lot about priorities and perserverance, and that despite seemingly insurmountable odds - you never quit.
My wife Jane has taken the brunt of my mental struggle, and is often the recipient of my anger vented, esp during my bi-weekly rides to the hospital. Kind of like a dog going to the vet, i suspect, much anxiety, and a natural takeover of adrenalin in prep of the 45 hour chemo infusion.
February 15, 2014
“….Well I concluded session 3 of FOLFOX, ye olde' 50 hour drip and then went to Johns Hopkin's hospital for consultation with the world's finest radiologists and then back to Ft. Belvoir for session # 4. Most people never have more than 12 sessions, for me, it's # 64. ouch.
Thanks Jane, Jamie, Kimberly, Kenley! Gavin! baby Rowan! and my latest Gbaby who I will see in about 2.5 months! can you all believe it..If a terminal illness is what it took to have four healthy gkids, two awesome daughters and two great son-in-laws, it'll all have been worth it!
P.S, I am a year or so out from getting Kenly to Kindergarten. gotta hang on, but now more grandkids! At this rate, I cant die for another 6 years! Thanks girls, you are not making this easy!
May 17, 2014
Hi Everyone! well....Friday, 16 May was my last day as a federal govt employee. After 34 years of total usg service, it is over. I can no longer fight two battles, so I elected to fight one, mine. I have officially medically retired, sold my home in virginia, bought a home in florida, and Jane and I just arrived to our new home tonight. an amazing 3 months or so since we talked last, with soo many changes, but I didi it.
You can call me ...Mr. Herman, or whatever you want. two weeks ago, I went over 6500 hours of chemo..."
August 10, 2014
Jane and my two daughters are great and my four grandchildren are awesome. I remember my goal was to walk my first Grandchild (when she was born) - Kenley Jane to Kindergarten. I was in a bad way and this was my motivation. I am one year away from that. Well, I have three more Grandchildren to walk to school now, so this is a real challenge, as I must hang on another 5 years!
Florida Summers are hot and we are in the rainy season. With that, I wake up, walk out back and catch a Bass, then eat Breakfast, read the digital Paper on IPAD and then Jane and I hang out in our pool, staring at the palm trees, the lake and the American Flag proudly dispayed in our yard. After that, whatever we want to do. We are just settling down after a crazy move and a long time to settle in, as I have been flying back to D.C. every week and catching the metro to the hospital and then flying back.
December 24, 2014
We've exhausted most cancer treatment capabilities in the Virginia area and with the conclusion of my recent, not too helpful weekly medical trips to/from Bethesda in the anti PDL-1, phase one clinical trial, we are just now able to settle into our home and establish our newly– and fully retired lifestyle.
Our main focus is being good grandparents for our four grandchildren, (Kenley, 4 1/2; Gavin, 2 1/2; Rowan 1, and Eli -nine months) taking some time out for Jane and I to be together, and pressing on with our continued search for ways to increase my life expectancy due to my terminal cancer- as we are nearing the end of medical marvels to keep me going. We are so proud and fortunate to have – and be close with-our awesome daughters, their families and all of you who are with us for the journey.
I am still considered a Stage IVb Colorectal Cancer "survivor". The cancer was in colon, liver and lungs. Colon pretty much ok, two pea-sized tumors back in my lungs ( not overly worried -all things given) and of course those four tumors in my liver - all about the size of a quarter.
January 8, 2015
Docter said they drained all fluid and freed up approx 85% of liver space. They were able to place a stint which is great news, so no external bag/ drain needed. He is in recovery now and I will update again when I can.
January 16, 2015
WE will get back in the Chemo Chair on Tuesday, to start the 5 hour, bi-monthly infusions, and 45 hour take home drip pack, and begin the almighty, life changing FOLFIRI chemo mix, with a chaser of Vectivix -the stuff that makes you look like you have measles over your body and gave me foot pain,
But, we can reduce dosages as needed, adjust accordingly, and at least have a 6 month plan in place that is agreeable to all. SO, back to 100 hours per month to try and shrink these tumors - esp the ones compromising my bile duct area. WE have to do this, Feb 25 is our 6 year mark! and place only < 1% have gone.
Folks, this is where we are. You have all patiently and bravely stood by us, and we have not failed you. Climbing this "mountain" has been easier with this team. We have seen much together along the way and will continue to see even more views and beauty as we begin to climb steeper, harder and faster again. There is no rest for the weary, and you know our group here doesnt quit.
Soon we may begin to see the summit that you all helped me climb to. NO matter what, the journey has been amazing with you all and we hope we will continue on a better trail, a longer, prettier trail that allows us to see even more beauty and do more amazing things before the summit confronts us. I will be ready for the climb. Will you be?
WE will post something in a week or to and let you know how the trail is…
May 18, 2015
Hi All; it's been a while since my last post, but what a wild ride it has been! On the health front, I am hanging in there, grinding away with my 100 hours of monthly chemo and side effects, but doc's say I am stable for now - so, I took a 30 day break from chemo to recover and get some energy back and will resume again tomorrow.
July 30, 2015
Posted by Jamie: I headed to the hospital around 730pm Wednesday night. Mom had been there most of the day. Around 8, severe chills started to take over his body and by 9pm he had a temperature of 101. Antibiotics and pain meds given, but with little relief for the next hour or two. His fever rose to 102.5 by 11pm, and his leg cramps and spasms were causing severe pain and increased uncomfortability, this is of course a gross understatement. Mom and I did what we could, massaging calves and thighs (yes, as his daughter - it has come to this). He was in and out, talking to himself, to us, but really doesn't remember any of it. His next dose of pain meds came at midnight, and finally he was lucid and showing some signs of relief. I headed home around 1:30am, leaving my mom, the absolute patience and love of a saint, with him over night.
As of this morning, his fever was down to 100, but he is still not able to eat as the doctor has not been in to see him yet. They have cancelled the scope for today. I will update when I can, and when there is news.
When I first arrived at the hospital last night, we were talking about a few current events, and dad stopped and said, "I am trained to survive, I look at these situations from a professional standpoint. I see the events with a different knowledge and understanding of what is required to make it out." We are 7 years further, we are 7 years together.
Thank you all for your continued love and support to our family. Sharing our laughs, smiles, as well as our sadness and grief.
After walking K to school, dad promptly came back to the house to hook up for his antibiotics after his recent hospital stay. One hour after that he headed out to the hospital where he started chemo round 144 or 145 (whose counting). I asked him to write a little paragraph about the day for me to include... and he sent me a version of what I shared with y'all yesterday. So I prompted him again, "I'm looking for the emotion you felt today, the event of actually walking her to school," and he told me...
"Mixed emotions as I wasn't sure If I would "fallout" given 6 years of waiting and holding on. But Kenley looked up and said Grumpa I just want you to love me everyday, and now I am focusing on G-man. Yes, it was a good day, simply put."
Update- On December 18, 2015, my dad passed away. He is missed deeply. To read more about him and his memorial fund please visit. https://www.youcaring.com/the-sere-association-491134
