Wow, what a whirlwind trip down to Hopuston and back and so many experiences.
First of all, let me say that all of my tests came back in good shape. The CT Scans showed the bone fusions have grown even strnger around my lat four fused vertebra and where my former fibula now attaches to the base of my spine and to my hips. Of extreme importance, the MRIs showed no new cancer in my soft tissue, and showed that the very small spots on my hips had grown very negligably or not at all. This is all very good news. With no new spots on my hips and with very very slo growth, they seem to be chordomas as well (as thpught, though we have not had a biopsy and would prefer not to "bother" them) and this leads us to probably using the sterotactcial radiation to treat them next time we go to Houston.
The plan now calls for them to give me an MRI here in Boise a few weeks before we travel to Hosuton and then go there with a plan, if things are similar as now, to get that done while there. It is a procesds that once set up will require one or two out patient visits during the 4-5 days we are down there.
Once again, our eternal thanks to all of those who have prayed and exerted theior faith on our behalf in this journey.
The trip down was something. We flew out of Boise at about 2 PM on Saturday, September 10th, with a 90 minute layover in Minneapolis. In Minneapolis, our flight was delayed...and dealyed...and delayed. We left there four hours or more late. This is worse for me because 1st, those aiport chairs are not the most comfortable when you have no sacrum (or tail bone) to sit on. Second, because it really disrupts my schedule for eating and taking care of myself and tends to cause significant anxiety as well as potential problems with my diet and schedule. As it was, we finally got to our hotel room near MD Anderson at 2:00 AM on Sunday morning. We slept until noon!
That day we visited my dear Aunt Esther who is my mother's sister and the only other surviving member of that wonderful family. She and her daughter, my cousin, Cynthia, live together in their home and we had a wonderful visit with them.
Monday I had my tests as well as the initial consultation with Dr. Rhines. We started at 6:30 AM at MD Anderson. Since I had a CT scan, two x-rays and an MRI scheduled, I just left the hospital clothes (blue shirt and pants) on all day instead of changing in and out of them four times. Every things went well. We had a wnderful visit with Dr. RHines and Gisela, his chief nurse practioner. As always they are so personable and gracious. Since we had not had the MRI yet, we could not find oput about the cancer, but the CT Scan looked great. I showed Dr. Rhines my "jogging" there in the hallway and he was estatic.
We met with the radiation oncologist and talked about potential course of action as out lined above. We then went for the MRI at 5 PM. Again, interminable delays. We did not get done with the MRI until well after 9 PM. That was a busy day. I have to say I was pretty worn out after the Saturday trip and the Monday tests. Gail as always, took great care of me and helped me through. She is my eternal angel.
On Tuesday we took it easy. Slept late again. Then, late in the day, we met with friends at their hotel who had come in for their tests and the large Spine Tumor Convention the nest day which we were staying for and which I was presenting at. These friends, Wiley and Sharon Shaw, and another couple, Steve and Linda, were folks we had met while I was in the hospital last year who also (Wiley and Steve) had had sacral chordomas and also had to have parts of their sacrum removed. We have grown good relationships and call and network with one another regarding our conditions and issues we face. I am so grateful for them...just another of God's tender mercies to us.
On Wednesday we met all day at MD Anderson. Started at 7:30 Am with breakfast and then had meetings and presentations all day, with dinner from 5:30 to 7 PM. I enjoyed the day immensely. They had very comfortable chairs for us. My Physical Therapist, Dr. braham Liberman gave the first presentation. He was a God send to us last year and helped me so much. We patients refer to PT, instead of as Physical Therapy, as "Physical Terror." It hurts so much! But it has to and though we jokingly say that, we are so grateful for what it does for us. Dr. Liberman was and is unbelievably knowledgable, and so very personable. I thank God in Heaven for Him and his help and we have become good friends.
Then I gave my presentation about my journey. OUr life as we knew it before, discovering I had a problem and ultimately getting it diagnosed. The surprise and difficulty of dealing with that diagnosis (as described in this journal), getting with MD Anderson, preparing, going through the dramatic surgeries, getting through the hospitilization and then the rehab...and finally coming home and coming to terms with our new reality. The faith that has seen us through and which we try and share wth others in similar circumstances. I am so thankful for the opportunity to try and help others.
After me, Dr. Rhines gave his presentation about spinal, brain, and sacral tumors and focused on my case. He is a very smart man...really, a genius, and in addition to being a renown neuro surgeon, he is as personable a man as you will meet...and a GREAT engineer as well given the structure he designed that now resides in my back. It was a great presentation. We later were able to meet with him after he saw my MRI and gve us the good news about that outcome. No new cancer and little or neglible growth in the very small (pin head sized) spots on my hips.
Later in the day, Dr. Patrick Garvey presented the challenges of plastic surgery as it relates to designing structures and using bone and tissue to help in these very massive and complex surgeries. It was amazing. He was the one who took one of my abdominal muscles and skin tissue covering it, and used it as a patch for the huge wound in my back from the removal of the malignant sacrum. He is also the one who took my fibula from my right leg and the new blood supply (veins) for it from my left leg, and inserted that bone as a strut in my back. That's why the bone fusion is so critical. Ultimately that bone fusion around those bones and around my fused vertebra will be what holds me together. Otherwise, even the titanium will wear out and ultimately fail without it. He and his team did a great job on me and he also focused on mycase...showing some pictures we had not seen of the procedure. Another grweat, personable, intelligent man who was there wheen we needed it most.
For those who have not seen it, this is a picture of how my back looked a few weeks after surgery with all the new hardware and bones. Now, around the hardware and the fibula, new bone has grown and fused, making it all much stronger:
The last presentation was from a young woman who had discovered she had a bone tumor that took a large part of one of her hips and part of her sacrum. She discovered it in the final stages of her pregnancy with her first child. What an inspirational presentation! She helped us all see, once again, that through faith and determination, and a will to accept our condition and make the most of it, there is a wonderful life after these experiences. I was so grateful for her words and inspiration.
Dinner was marvelous. There had been perhaps a hundred patients and their spouses or care givers from the conference and probably 60 or more ate dinner with us all. Dr. Rhines and GIsela presented me with an award and a plaque. It states,"Heart of Faith and Spirit of a Warrior. To Jeff HEad for sharing his journey with others through faith, the will to fight, and fulfillment." I immediatley asked to say a waord and all I could do was dedciate that plaque and sentiment to my wonderful, dear wife, Gail. I try, and I hope to help others...but many times there is a thin covering between that will and desire to help and other feelings that would get me down. Gail has helped me through that and been the real strength and I have to thank my Heavenly Father for her and let others know.
That whole day was great and we are determined to attend these conferences each year.
We got to the hotel late, went to bed and then arose on Thursday, Sept. 15th to head home. The trip home was long, but no delays. We had a four hour layover in Salt Lake City and about a mile and a half walk between terminals. I went a good ways and then we had to sit and rest. I was pretty worn out from all of the activities. Gail got a young man, an attendant there at the airport, and he ended up wheeling me the rest of the way to our terminal. A very fine young man whom we thanked and asked God's blessings upon. For some reason, in Salt Lake, they do not have the electric carts to take people around in. They determined the safety hazards over rode the benefit I suppose. I for one, wish they still had them.
So, here we are back in Idaho. I mowed the lawn yesterday, am heading for the dump today and will take my grandsons to the movies this afternoon. Wish the granddaughters could come...but there other grandmom has claim on them this weekend and that is completly understood. I am so thankful for our family and the time we all spend together. It is what life is about and those relationships, along with our faith, are some of the few things we acquire in life that we can take with us. Cherish them and spend as much time as you can building them.
Again, thanks to all, I will continue to update things as they occur.
Sincerely, and in Christ,
Jeff Head