It's hard to believe that two years ago today I was completing my third and final surgery at MD Anderson in Houston, TX, to remove my entire sacrum. I remember distinctly a lot about that experience, and then of course there's a lot I do not remember because I was really pretty out of it on the pain meds.
I was in the ICU another two-three weeks after that last surgery, having already been in the hospital sinec April 27th, 2010, when I came in for my 1st surgery. That one was about 10 hours long and went in through my abdomen to prepare for removing my sacrum and the chordoma tumor which had filled it up. They took my right side abdomen, including all of the muscles and skin tissue, and pushed it through to the back of my body to prepare for my 2nd surgery and use it to cover the wound that 2nd surgery would create. They also rearranged my intestines and rectum a bit to prepare for that 2nd surgery. They then went to my legs and on my right side cut through my fibula on both ends until it was barely hanging there so they would be able to easily remove it and use it during the 2nd surgery.
Then, three days later, on April 30th, 2010, they conducted the 2nd surgery which was the most major. It was over 18 hours long. They cut in through my back, making a circular incesion down low on my back with straight parts coming up half way up my back on the top, and then clear down to my recttum on the bottom. This was necessary because of the massive amount of work they had to do. They cut through all of the muscles tissue there, including mu glutes to get to the sacrum and open up enough to expose my entire lower spine. Then they went through the painstaking procedure of cutting out the sacrum and all of the nerves and nerve roots associated with it. A very bloody, and a vry intricate surgery requiring very special neurosurgeon expertise. I thank God it was Dr. Rhines doing it.
Part way through apparently they nicked a large blood vessel below the sacrum which began bleeding badly. An anesthesiologist noticed the drop in blood pressure but the surgical team could not get to it to repair it until the sacrum was out. So this individual pumped blood through me to keep me alive while all that was going one. 41 units of blood was used...about six times your entire blood supply.
Ultimately they got the sacrum out, repaired the blood vessel, built the lattice frame work of titanium around my last three vertebrae for support (which is quite the achievement itself...looks like a miniature Eiffel Tower, again thanks to Dr. Rhines)...but, then because it had gone so long, they determined they would have to do a thrid surgery to place the bone from my leg (the fibula) in as a strut support fot the other work they did. So, they used the abdominal tissue they had prepared and covered the wound with it, and stitched me all up.
It was then 12 days before the third surgery. And that was the third and final surgery which I celebrate today, May 11th, 2012. Another 9 or 10 hour surgery where they cut back into me the same way they have gone in on April 27th, and then took my fibula and a blood supply for it from the other leg, and built a spar that connects my two hip bones to the bottom of my spine and the titanium structure there. They used long titanium lag bolts to attach the bone to my hips and then used bone dust made up from scrapings of my own bone and other bone supplies so that when mixed with my plasma it would stimulate bone growth around the areas of the bones that were joined togewther and all around the titanium structure. This bone growth would ultimately be the principle support my body depends on because the titanium would otherwise wear out in ten years and have to be replaced...and I do not want to go through that again if I can at all avoid it.
So, here I am two years hence. What a blessing it has been.
I know the good Lord, without doubt, through the faith and prayers of so many family, friends, relatives, neighbors, people at church...at many churches...and friends at work and folks from all over whom I don't even know, prayed for me, and through the expertise and very hard and compassionate work of my Dr.s, nurses, attendants, therapists, etc., and because God in Heaven, for His own purposes, preserved my life. I promised Him, as a result, that I would witness His name and that of His Son for their love, compassion and mercy towards me.
I can walk on my own, without any assistive devices. I have been working full time since I got back home in October of 2010. I am providing for my family and working toward retirement. As a result of a leave share program (described above) where I work, I never missed a day of pay, and was never on disability. I have seen two new grandchildren born who are both over a year old now and walking and so much fun. I was able to see our youngest son return from a mission for our Church from Canada and begin getting on with his life and future. I work with my older grandsons building 1/350 scale models which brings a lot of satisfaction and joy. I am able to still mow the lawn with our riding mower and take our garbage to the dump each week. I spend a lot of time with our ids, grandkids, and with my wonderful wife, Gail, who herself saved my life during those long, long weeks in ICU and the hoospital and through rehab.
I have been to a lot of movies since being back, more than my whole life combined before, enjoying them with my grandkids, my own grown children, and most especially my dear sweetheart and wife, Gail.
Here's the link to a video on Facebook I recently took on Mother's Day, of two of our grandkids playing as their families visited us to celebrate Mother's Day with Gail:
http://www.facebook.com/v/10150829557379069
Life is so good! How blessed am I to be able to witness these moments.
I was able to give a very neat presentation at MD Anderson last September when we went back for our checkup in Houston. Dr. Rhines (my principle physician and neurosurgeon gave a presentation, Dr. Garvey, the bone Dr. who worked with getting the bone out of my leg and building it as a strut to help support my entire pelvic ring also gave a presentation. Dr. Liberman, who was my physical therapist ater I got out of the hospital for three months and whose expertise and manner of working with patieents helped me so much walk as well as I do, also gave a presentation) I was honored and blessed to be used as an example for others in this whole process.
BTW, I am convinced without Dr. Lieberman's particular way of working with patients and great knowledge of the physical body, I would not have been able to progress so far. We stayed an extra month in Houston to take advantage of that expertise. In retrospect, if I had had enough leave and time, another three months with him would have made even more difference...but in the end, we have what we have.
Here's a link to a short portion of my presentation that MD Anderson put up on YouTube:
http://www.youtube.com/embed/6G5G8Y9M8CY
And here's a link to the entire presentation on the MD Anderson web site. I would urge anyone interested in these types of life altering and saving procedures to watch it all. Here's that link:
Jeff Head's MD Anderson Presentation, September 14, 2011
Finally, we are at a point now where every six months we will do our MRIs, CT Scans, and blood work here in Idaho to be sent to Dr. Rhinse at MD Anderosn for review. If need be, he will then call us down there. If things are clean, then we will wait to the next check up and go to MD Anderson once a year, in the late summer/early fall, in September each year...probably for the rest of my life.
We know that there are three very small spots of cancer on my hip bones. Have been from the beginning. It is likely that this Spetember that they will arrange to treat those with stereotactical proton radiation to retard or eleiminate them.
They are chordomas and very slow growing as long as they remain in the bone. If we can retard or eleiminate them, then it is likely that they will not cause me any problems for the remaineder of my life. Then the key thing is to just continue observing the soft tissue around the margins of where the main tumor was removed in the hopes that nothing comes back.
So far, so good in that regard. But in the end, all of that, in my estimation is in the Lord's Hands and we will face whatever it may be when it happens. We hope that no more will come along...but will deal with it should it be so, with faith in our wonderful MD Anderson medical professionals, in one another, in the faith and prayers of family, frineds and others...and most importantly with a steadfast faith in our Savior, Jesus Christ and His Father, our Father in Heaven.
As it is, I have been richly blessed to enjoy the time I have since these momentous events and thank God in Heaven, my dear wife, Dr. Rhines, Gisella, Dr. Garvey, Dr. Fu, Dr. Lieberman, and too many nurses, attendants, and therapists to name. Also, thanks to my dear friends and partners in the Chordoma experience, Neil, Wiley, Mohammed, Steve, and Scott who have suffered and lived through these same types of experiences. Networking with and befriending those who have experienced these same things, and helping one another, has been a critical part of the recovery and ongoing process...and a very helpful and enjoyable one. Finally, thanks to all of our family, friends, and others (particularly many on the facebook and on forums on internet) who prayed for us and encouraged and helped us. Life is good, we can all make the best of it, whatever our circumstance and help others as a result of our own experiences and walk in life.
I will add to this journal now with any major events or findings, and at least each year in the September time frame as I have my major checkup.
Sincerely and in Christ,
Jeff Head
Emmett, ID
May 11, 2012