Hello all
By now you may have heard that I have been diagnosed with cancer. Here are the nuts and bolts. Specifically I have been diagnosed with a malignant synovial sarcoma in my upper left calf. It started last summer and I (and my doctors) initially believed it was a calf strain that occurred in June while I was running. I was able to pinpoint a specific time that the strain happened. An MRI confirmed it and the docs saw a hematoma (blood pooling inside from the calf strain) that they believed would dissipate with physical therapy. I went to physical therapy from June until August and was responding well. Then the pain from the calf strain unexpectedly returned at the beginning of September. Because I could not pinpoint an exact time of when the pain returned, my physical therapist recommended that I go back to the sports medicine doctor. After seeing him, he recommended that I see an orthopedic oncologist to rule out anything suspicious. Not sure about that “rule out” term anymore!
The oncologist examined my calf and ordered another MRI, which I had in the beginning of October. After comparing the two MRI’s, she determined that the mass in my calf was growing and that she wanted to conduct a biopsy. I had the biopsy October 19th and she was able to determine the malignancy immediately. So I knew that day that I had cancer. She also mentioned that day that she believed it would be a 70% chance of amputation, but would know more when the final results of the pathology of the tumor came in.
She called me last night with those results which narrowed down the type to the synovial sarcoma. Unfortunately, it’s pretty rare and does not tend to respond well to chemo and radiation treatments. The tumor is also wrapped around muscle and nerve fibers so surgical removal would be difficult. Therefore, amputation is the best alternative to minimize recurrence or metastasis (cancer spread from primary site to secondary, i.e. lungs or lymph nodes) months or years down the road. Jenn and I are on board with her initial prognosis. I have another scan (PET/CT) this Thursday to determine if the cancer has spread. I’ll meet with a medical oncologist on Friday to discuss chemo/radiation options, but again, based on what my first oncologist is telling me, results are mixed with this type of tumor.
Monday, November 5th will be the final decision day for amputation or not. Ultimately, the decision will be left to Jenn and I but we feel very well informed by the docs here at Vanderbilt. If we do decide to amputate, it may very well happen next Wednesday, November 7th! Wow! It would be an above the knee amputation of the left calf. I would be in the hospital for 4-5 days and go home for another 1-2 weeks to recover. Once recovered enough, I believe I would go through a round of chemotherapy to ensure any possible metastasis is addressed, but that is still undetermined. Once fully recovered, I would get a prosthetic leg (wait…faint memory of my Steve Austin kindergarten lunchbox) 6-8 weeks post surgery and start learning to walk again sometime after Christmas.
Right now, the tumor is more annoying than anything. It is compressing a nerve that runs to the sole of my foot, so it feels like my foot is constantly waking up from being asleep. Every so often a little jolt of pain, like a pin prick, decides to show me that I really don’t have full control of my body!
Emotionally, Jenn and I are coping. Usually, after hearing some news, we cry, hug, figure out how to tell the boys, then adapt to the latest situation. Humor is a big part of my coping mechanism. I’ve always been pretty good at accepting what can’t be controlled and focusing on what can. The same applies for this tumor. While the news has been difficult to digest occasionally, we deal with what we have and focus on the positive. We’re very fortunate this happened while we are at Vanderbilt. They have one of the best cancer centers in the country. I have been in touch with the Army and West Point and both are supportive of keeping me on as long as I can perform my duties as an Army officer with a prosthetic. Ultimately, that will be decided by an Army medical review board, but my current career field (Nuclear and Counterproliferation) does not have me kicking in too many doors, so I believe I will be able to continue on provided the spread is controlled. I’m encouraged and completely humbled by the Soldier amputees that I have had the privilege of witnessing in my career. I realize I am fortunate that I have time to adjust to a potential amputation where many Soldiers do not. More often than not, they don’t have a choice and only realize they are missing a limb waking up after a large explosion. They have provided and will continue to provide inspiration to me as we go through this journey.
Jenn has been a source of immense strength through this so far. She has been nothing less than incredible. From taking care of the boys while I lie around moaning probably a little more than I should, to helping me change dressings on my biopsy wound; she is a source of overwhelming inspiration and will continue to be through all this. I didn’t think I could love her more before this, but somehow I do. I just don’t know how I would have to go through something like this without her.
We also have been completely encouraged by the overwhelming support that our Nashville friends and family have selflessly provided. Our neighbors have offered their full help and with the boys, we know we will not be able to do this without them.
So that’s the first update. I’ll post more as we go through this. Hopefully, my words will help reassure folks and keep everyone informed. Thank you for all your thoughts and prayers. I never realized how much they would mean in a situation like this. Please keep them up and please let us know if you have questions.
Pulling hard for you! Anything I can do, you know to just holler!
Thanks Andy. You’ll be my go to guy for Civil War talk. Great seeing you again!
You, Jenn, Ben, and Jack have been continually in my thoughts and prayers since Robin first told me about your “mass”. I have been waiting for the right time to let you know. Your blog has allowed me to do just that.
It takes courage to share your journey and I am honored to “walk” along with you. How does one not use “walk”?!? :0
Hunter, I like that you are already using humor to help cope with this sudden “curve ball” in your life. You seem to have a wealth of humor inside – one of the things I like about you.
Sending love and hugs to all of you. I look forward to meeting your incredible rock, your wife, one day.
Thanks Steph for the supportive (that’s almost funny too!) words. You know me too well to know that I will find the humor in all the potential plays on words for this dilemma rather than skirt the issue. For me, humor desensitizes and demystifies cancer. Humor makes it less scary. It’s real, it’s here and it’s a bully so let’s make fun of it to take away it’s power. If I have to go down, I’m going down laughing. After all this I of course expect a full standing ovation…
Ben has shown some great insight. After telling him about the impending amputation and prosthetic, he insisted on calling it a “roboleg.” He also wants to hook up a joystick to control the leg. That should be interesting, although I was a little concerned when he mentioned that he wanted to have a “self destruct” button attached. Not good for recovery!
You’re right that Jenn has been a rock. I reiterate what I wrote that I could not imagine going through something like this without her.
Ben has some very creative ideas for your upcoming prosthesis. However, I would sleep with one eye open. Ben’s aptitude is quite high…
First: Andy and I love you, Jenn and the boys and will always be here if any of you need anything. Second: you were always one for attention, but this is rediculous. (-:
Stay strong brother. I can already see you on the other side of this fight standing tall. Don’t bother asking for help, just let us know what you need and we’ll be there.
Hi hunter! Just wanted to let ya know we are praying for ya! Hang in there and keep us posted! Your attitude is awesome! I picture you running you next marathon summer 2013!!!!!!! Love ya cousin!!!! Holly
Thanks Holly! Can’t wait to see you soon. Unfortunately probably not Thanksgiving. Love you too!
You are an amazing person and have always been so positive! I believe this wonderful outlook willl take you far down this bumpy road. You WILL conquer this!!! All of us here at WP are thinking of you and if you or your family need anything, just give us a shout.
Hey Kristen! Thanks for the kind words. Look forward to seeing you up there again.
You have been and will continue to be in our prayers. We are here for you whenever you and Jen need space to “just be” — send the boys on down! xo
Thanks Audrey. It’s assuring knowing you and Marsh are only a few “steps” away!
Congrats on starting this blog. Not only will it update everyone you love with what’s going on, but I’m sure that writing about your experiences will help you cope, especially on difficult days. (I’m a writer so I have to say that!) I don’t know you guys very well yet but already I’m totally impressed by your calm, can-do attitude. Good luck and many prayers to you as you progress through this curveball life has thrown you. And please yell if you or Jenn need anything pronto. I’m right down the block so I can bring over food, snacks (alcoholic pharmaceuticals?), babysitting favors, fresh reading material, help cleaning the house or running errands. Whatever. I love the roboleg idea. You could mass market that and make a fortune! 🙂
Thanks Maura.
Hunter, prayers are with you from your friends at DTRA. I respect your strength of character and perseverance and I know those characteristics will pull you through. I also want you to know that you are welcome back here any time. I am confident we can give you some employment options that will mesh with your needs either as an Army Officer or a civilian should you retire. You are highly respected and I know your future is bright. Sincerely, Kyle
Thank you Kyle. That is very kind and generous. Hopefully it won’t get to that point, but if so, it’s nice to know it will be available. Great hearing from you.
Hunter-
Keeping you and your family in my thoughts and prayers. You guys have been on my mind since Charlie passed along the news. I look forward to reading your blog and wish we could be there for you guys with more than just words. Please let me know what we can do to help. Stay strong Hunter.
The human spirit is stronger than anything that can happen to it. – C.C. Scott
Thanks Sarah. I miss you guys. How’s the new Mommy life?
Jenn & Hunter- I was so sorry to hear about Hunter’s diagnoses. Even though we are far away, we are here for you. We will be keeping all of you in our prayers and sending lots of hugs!
Megan- thank you so much for getting in touch. It really means a lot, and I greatly appreciate you keeping us in your thoughts/prayers. This whole situation certainly came as a great shock and is pretty overwhelming, but we’re hanging in there:) I’m terrible about keeping in touch, but think about you a lot! Big hugs to your sweet little guys!
Hunter
I am without words to express the sadness I feel for you, Jenn, and the boys. I’m sad for all of us whose lives you touched. I only wish I had your grace with words. It was my privilege to work with you at DTRA. You brought great humor to our too serious world at work. I remember telling MAJ Bacon that he needed to carry on with the same great sense of humor. I must say he did a good job. 🙂 If there is even one small thing I can do for you and the family please let me know. If you find yourself in NOVA I have three guest rooms for you and the family to stay in. My husband and I would love to have here. I am forever grateful to you and your family for your devoted service and sacrifice serving our Great Nation!
My constant thoughts and prayers are with you!
I wrote and tried to post this once before please delete one if you find that I succeeded at posting both 🙂
Sincerely,
Liz
Hey Liz! Thank you for the nice comments. I do miss being around DTRA. I’ll keep you guys in mind if we are there again.
Hunter, Jenn, Jack and Ben – you already know your Dad and husband is the greatest. He is also a great comrade and project manager. Guess God didn’t think you had enough to do and you’re already demonstrating your great spirit in attacking this on your terms which is why you are a leader and I’ll do anything you ask to help you and your family. I’ll say your names in my prayers everyday. Godspeed, love you brother! My cell is 703-582-9929; office 703-767-6976.
Hey Mike! Great to hear from you again – unfortunate for the circumstances. I appreciate the words of encouragement. I’ll keep those numbers close.
Hunter,
Everyone says this, but I was really floored when I found out what you’re going through, and I can’t express how much I feel for you and for your family. I’m filled with admiration for your emotional strength and character, and doubt I’d be facing this as clear eyed as you are right now. You have my unreserved respect, and my hopes that you, your family, and the medical team knock this thing into remission. Anything I can, just ask. I will keep in touch.
Meade
Thanks Meade. No one told me about this part of the PhD process…I miss working with you.
Brother from another mother, remember me? The guy with the terminal glioblastoma multiform brain cancer that was diagnosed on Christmas Eve 2009 and the best prognosis was 12 months? I know you are probably coming out of anesthesia right now and the world has crashed down around you and your loved ones, but the bright side is you always have the love and comfort of the Lord and all us folks wishing you the very best. If Ruth and I have learned anything it’s that nothing is for certain and bald guys enjoy knit hats for Christmas. Let’s get together soon. (540)737-5425 gets our kitchen. Remember that “terminal” is only a word.
Ken & Ruth Stern
Thanks Ken! I called yesterday and will try again today. Believe me, you were one of first I thought of when this happened.
Great talk. I really enjoyed the pick-me-up I got from making fun of you. It’s always been cathartic to throw stones.
Hunter,
You may nor remember but I remember a young man, and I mean young, probably 8 or so coming to my classroom for reading WAY BACK in the early 80s at R.D. Head Elementary. Then “reading groups” was THE method of teaching students to read and you left Mrs. McCart’s class and came to mine because I had the “top level” group in the third grade. You were “top notch” then and I can read into comments from your family and friends that you continue to achieve A-One status. Way to go R.D. Head graduate.
Humor certainly is the best medicine and your attitude about this trying time for you and your family is a healthy one. Did I say healthy! Yes, a healthy mind will see you through the days ahead. Positive thinking, positive attitudes, positive actions, and positively prayer are powerful weapons against life’s slings and arrows.
Know that you and your family are uplifted frequently and positively in prayer as you navigate these unchartered waters…….oh, no, that’s what a Navy guy would do isn’t it. You Army guys or the ones with the feet on the ground so I’ll just say God Speed, Hunter, as you take each day one day at a time.
I count your mother as a dear friend and you have her wonderful personality. Give my love to her and your father.
Glen-Dora Roling
Ms. Roling (you know I can’t refer to you any other way!); I remember handing in an assignment shortly after beginning that reading program. You asked me a question and I responded “Yeah.” You looked at me with the famous try-answering-again look. So I said, “Yes.” Same response. After I believe about 7 back-and-forths, I finally answered correctly, “Yes, Ma’am.” Great day!
I’ll give my best to my folks. They have been super troopers through this. Thank you for the kind words and I can only respond to your requests with –
Yes, Ma’am.
Hunter
Hey you. That pain your feeling is weakness leaving your body. It’s the absence of feelings that we fear. I get the comfort part and missing sleep. A body pillow and really tight sheets help that a bit. Exercise suggestion- get use to getting to the floor and getting back up. Use a tether or an anchor to balance yourself. Good for the core. Once your on the floor lay back fully and slowly stretch. Give your inner parts a few moments to settle. That nagging back ache will slowly relieve itself. Don’t skip your pain meds. Keep the blood levels up and see if you can adjunct them with over-the-counter stuff.
I start on my second hairless journey tomorrow. Wish me luck and call sometime.
Love and respect, brother.
Hunter,
It was good talking to you last night. Maureen and I will keep you and your family in our thoughts and prayers.
-Chris
Dear Hunter,
Eat more desserts. Life IS short, eat dessert first.
More by snail mail.
Dooley