Well, it's been seven months since I last wrote here in my Chordoma Journal.
Time passes quickly and I have been so blessed. I work full time and was accomodated at work in a very good fashion. I am able to walk without any assistance devices...it may not be the most steady, and certainly not with a lot of endurance or stamina...but I am walking and enjoying it. I have been able to establish a very good, probably 95% of the time regiment for my bowel/bladder disabilities that allows me to function fairly normally on a day to day basis with a good schedule and diet that works well fo me. I have seen three new grandchildren born and growing (that makes nine altogether now), and enjoy spending a lot of time on weekends with them. I hope and expect I will see more before all is said and done. I have a wonderful and loving, dear wife (we recently celebrated our 35th anniversary) and family that have been amazingly supportive and loving and gracious to me.
These are all great blessings and gifts from above for the which I am eternally grateful, and humbled. And I thank God in Heaven, my Savior Jesus Christ, my wife, and family, and so many friends for being so understanding and helpful to me. In the end, those very relationships right there are what counts in life. How we treat others, nuture them and our relationships with them, and how we help those around us. I pray I can be as helpful to others along my way, as so many have been to me.
Today, April 27th marks three years since my first surgery when they did all the surgery work (over 12 hours worth) to get ready for my second surgery, which followed three days later on April 30th, where my chordoma tumor, which included my entire sacrum was removed (another 18 hours). In that second suregery, they had a few complications...not surprisingly, as it is about as intrusive and as major a neuro and ortho surgery as it gets. As a result, I had to have a third surgery on May 11th, to actually put the strut, which was comprised of my left fibula bone from my leg which they broke into an angled strut attaching the end of my spine and all the titanium cage they built there to my two hip bones (another 12+ hours)
Dr. Rhines and his Chief Nurse Practioner, Gisella, along with Dr. Partick Garvey worked miracles with me. God bless them and their entire staffs for their amazing capabilities and skill, their compassion and caring ways, and for their skill...and their faith.
They are literally life savers to me...and I would trust my life to their care in an instant.
Those were days that went by in a haze and a blur, though there are some very specific things I remember about it. Then laying on my sides for the next six weeks, getting turned over every few hours...from one side to the other. All of those weeks, trying to let those wounds and injuries heal, and to let the bones start to fuse and stengthen. What a joy it was on Father's Day, when my son Jeff and his wife, Joelen surprised me by showing up there in Houston and coming to see me in the hospital. I wept like a baby...but not in mourning...in joy.
Then a few short weeks of rehab in the hospital, trying to get me ready for relase by getting me to stand (which was a significant undertaking in and of itself as the videos earlier in this journal attest), and then slowly walking around the floor with a walker and learning of my disabilities as they slowly undid the myriad of lines and tubes that were attache dto me and sustained me. Finally, just after the first of July, I was released and went to an apartment that we had graciously found in the Lutheran Faith House, which staff and congregation were so Christlike and gracious to Gail and I the whole time we were there, and where I would spend another three months with Dr. Abraham Lieberman in very intensive physical therapy. Those were hard, but exciting days. Physical therap[y of this nature hurts...simply put...and has to if you are going to make progress and be able to function as well as you possibly can. Gail encouraged and motivated me, Abraham Lieberman and the people around me there inspired me, and God in Heaven blessed me beyond what I deserved.
I am convinced that Dr. Lieberman and his unbelievable knowledge and understanding of the phhysical body, and his manners, was a HUGE part of why I made the progress I made, and anyone needing any form of spinal, amputee, or major phgysical therapy of that nature I would recommend him to. He was another life saver in this and someone I would literally trust my life to..
It was a hot summer there in Houston, and Gail and I got through it. My Aunt Esther and her family were such a strength. We were visited by several close frineds and family while there...always encouraging us and bolstering our faith. God bless Gail for her love, compassion, and understanding. I also would never have gotten through it as I have done without her.
Then, finally, in very late September, we drove home to Idaho. What a joy it was to drive the pickup myself! What a wonderful trip through the mountians in the early fall. How GREAT it was to get home and find the preparations that my son Jeff and his wife Jolene had made for us at our hoime, and to then have two of my wonderful granddaughters from my daughter Becki, Kyra and Kenna, visit and sit with me on the front porch rocker as I had prayed for and invisioned for so many months!
Now, here I am, three years after those events and on my way. No new cancer thus far. I do have the three very small spots on my hip bones, completely within the bone, which were already present when the surgeries were conducted. They have grown very little since. In September, we are scheduled, during my annual check up there ayt MD Anderson, to have them treated with stero-tactic proton radiation...which, if everything goes well, will either kill them, or retard them to the point that I will not have to worruy about them for the rest of my life. That sounds good.
Either way, each day is a blessing and simply must be taken advantage of. Here are some pictures of hapening with me and my family of late:
Our clan before #9 grandchild was born, me at the Silver Dollar Pawn Shop Las Vegas, daughter Rachel's wedding at Coronado, Gail & I at Norfolk Naval Base
Buidling models w/grandsons Bradeon & Riley, Kenna & Kyra at Kyra's 10th birthday, Daughter Katie & her family took me to the Spring 2013 BSU Team Game
Wonderful experiences and I am glad to be able to share in all of them!
Now, this does not mean that there are not difficult or hard times. My Mom, age 87 years passed away in October of 2012. We had watched her for almost seven years, and she went into a care home when we went down to Houston for my surgery. Even in her failing health, she cared for and was very concerned about me and my health...and that of her entire family. Gail and I took her home to Texas from Idaho in my pickup truck, where she was buried next to my Dad. Then, a little over a month later, my dear brother Lee, age 60 years, passed away down in Texas. He was diagnosed with ALS (Lou Gehrig's Disease) in early 2012. He was always a great example to me as an older brother and a dear, close friend in our adult years. He left his wife Brenda of 40 years and his four kids and grandkids here on earth as he returned home to our Father in Heaven...and we were off to Texas again. When I went through my own cancer surgeries and ongoing ordeal, I presumed that I would certainly pass before him as at the time he was in excellent health. But we never know...and therefore must live to be prepared for out time when it comes. Lee certainly did.
So, I do not want to paint a picture of a completely idealic and perfect situation. It is not. Sometimes life is hard. I will be on pain meds the rest of my life and there are times when the pain is significant and bothersome. The various disabilites are not easily born...but the key is that I am here to bear them! And I know, from the last three years, that I can get through however many more years the good Lord has in store for me, and do it in a mostly enjoyable and positive manner which can be a blessing to me and those around me. And that's good enough for me, and in my view, what life is all about.
I am about 5 to 6 years away from retirement, and if things hang together, will be in a good position for Gail and I...and for my kids and grandkids...which is something I dearly want to be able to do, as my parents did for me.
So, I hope this finds you, whomever you are, wherever you may be, and whatever circumstance you find yourself in, in a position where you can see your own life and circumstances in as positive light as possible, and realize, even in travail, there are silver linings...there are tender mercies....there is so much to be gained, experienced and shared with others...which then makes those circumstances actual blessings in disguise. I hope you can all see that...I know I have come to do so.
I will write again, during or after my visit in Septemebr to MD Anderson, or should anything major come up.
God's speed, and His blessings to you all!
Jeff Head
Emmett, ID
April 27, 2013