Oh dear Jeff, your journey is not without challenges. I hope the med change from morphine corrects the illness you have experienced. Hard decision on the (as you put it) Life changing surgery. God's healing touch and blessings on you.
Dolly, you said it better than I could have - thank you. And, Jeff, know that there are people out there in cyber-space praying for you - people you haven’t met, and probably never will. We IMPLORE the Lord for your healing.
Thank you so much for the update ping, Dolly.
Continued prayers for you and yours Jeff.
Well, today was the eventful and much anticpated day when we finally had the opportunity to sit down and talk with Dr. Rhines at MD Anderson, a very well-known and reputable neurosurgeaon, the Director of the Spine Program at MD Anderson, and one of the world's experts on Chordomas.
We went in at 8:30 AM arriving earlier and signed in. We had been forewarned that it may be several hours before he could see us because of his schedule and many responsibilities. But, about (9;00 we were called back and by abpot 9:20 Dr. Rhines was visiting with us, along with his RN and Advanced Practice Nurse, Gisela. She had come in a few minutes before and was going through my history when Dr. Rhines came in. They were both extremely professional, extremely knowledgable, very articulate, and very personable. Dr. Rhinese reviewed my history with me and then gave us an in-depth explanation of chordomas and my specific case whiile covering all of the various alternatives. He at one point early on indicated he knowe that we had probably been out on the web and could probably c\even perhaps lecture him on my condition, but if we would let him go through his presntation, it would probably answer the bulk of our questions.
And it did. The only realy departure in terms of questions that I had was concerning Carbon Ion Radiation (CIR) treatment that has been developed and used in Japan and now Germany that shows some promise of avoiding surgery. I'll go into that later, but Dr. Rhines, very graciously indicated he would contact and talk about my case specifically with associates he had in Japan and ask what they thought.
That method is not approved for use in America, so as far as what Dr. Rhines can do, the surgery which techniques he is very experienced with and an expert at is the method we are heading towards. I accept this. For me, evn though there are already a couple of small cancer points that have cropped up on my hip (which means there is a stronger chance that it is already spreading elsewhere, the surgery provides the best opportunity to prevent further spread from the primary site, and to avoid the primary site ultimatly destroying my sacrum and spreading to other nerve endings and debilitating me to a much more sever extent.
I cannot tell you how appreciative Gail and I were of Dr. Rhine's open and forthright manner, his willingness to listen to our concern and questions and address them, and his and Gisela's attitude towards us and our circumstance. He spent over two hours with us and when we had discussed it all, we agreed that he would contact us next week with the results of his own activities (including contacting Japan) and make a final decision to go forward with the surgery, which he indicated would follow about 3 weeks after that.
So, barring some miracle regarding CIR from Japan, it looks like we will be going through the surgery in Houston sometime early in March. That will entail very major surgery which is itself life-threatening. He believes that because of my health history, no-smoking, no-drinking, no major problems, my strenth, etc., that in his professional opinion I will come through the surgery and avoid infection...though he was sure to point out there can be no guarantee. Then, there are four weeks after surgery in the hopsital going through recovery and rehab. For ten days you cannot lift your self, sit, stand, or get out of bed while the new "hardware" fuses and heals to your body. Then they teach you how to begin to move, roll over, sit back up, and ultimately get up and walk over the next 15-20 days...as well as how to handle your own bodily functions in terms of bowels and bladder that will be imparied as a reult of the surgery. One good point there...at MD Anderson they do not by default perform a colostomy or create a permanent catheter. All of your plumbing is there, you are just numb, and they give you rehab to teach you how to self catheter and yourself get your colon to empty its contents.
With the colon it involves a dietary regiment that regulates you and creates a consistancy that is compatable with doing this. That going to be a lot more healthy diet anyway...and I like this approach.
Probably more detail than you wanted, eh?
After four weeks, you are released but then, in all liklihood remain around MD Anderson for another four weeks while proton radiation is applied to the area of the operation. 40+ treatments over four weeks.
After that you go home, but then, the Dr. made sure to point out that most patients require another four weeks of transition from home and their new life-style, back to work.
That, is the path we are on.
One aside. during the conversation I indicated to the Dr. that I had what might be a personal question for him. I indicated that since he would undoubtedly through this process get to know me personally, inside and out, and particularly anatomically, better than almost anyone I know, I had a question for him. He told me to go ahead and so I asked him if he was a man of faith who believed in God. He said he was. I indicated I didn't mean to offend, but just as he had indicated to us that our positive mental attitude would be critical in getting through the surgery and the rehabilitiation, that our joint positive faith in God, when exercised by believers together, both those praying for those in harm's way and for those put there to help them, that faith works best when we are united in it. I told him there were hundreds not only praying for me, but for him too, as my Dr. and I wanted him to know it, and join with us in our faith in God's will. He thanked me. I asked him if he had heard of of Aninias (of Damascus) in the Bible. He was not familiar with the story. I told him that in the New Testament one of God's servants (in this case Paul) was sent to Aninias (and Aninias to him) to find what it was he (Paul) was to do. And Aninias gave him the direction. Aninias was respected, knowledgeable in the things of God and wise and Paul did hath he said (and oh yes, Paul's sight was also restored in the process). I indicated that I do not want to imply that I, Jeff Head, in any way am like that servant of God, or that he, Dr. Rhines was Aninias other than that I had faith that God in Heaven had led my footsteps to Dr. Rhines for whatever reason, I that I needed to listen to him as regards this medical circumstance. He, Dr. Rhines is very weel respected. He is very knowledgable, and that he is also a man of faith...and that was my faith and thoughts on the matter. He again thanked me.
As to the CIR treatment in Japan...it shows very good signs of great results with non-surgical treatment of this cancer that is not only successful in killing the tumor, but also very good at avoiding any furhter neurological side effect to the bowels, bladder, etc. Problem is, it is in Japan (and also Germany) and has not been approved in the USA and so is not covered by insurance...and the US community does not feel there is a large enough body of data to indicate it is the way to go yet and that we should be more cautious. Based on what I have read, if I had that type of money available, I would consider spending it to try and pay for such treatment in the hopes it would work as it has for many people in those countries since 1997. If it did...great! If not, I feel that soon enough thereafter, I would proceed with the regiment here in America.
But I would not sacrifice the opportunity at MD Anderson to pursue this either. Dr. Rhines is going to share my data with his compatriotis, and if the door is opened to do such a thing, we will consider it then.
We are going to go to a meeting Dr. Rhines is holding on Wednesday which is a seminar on what to expect for this type of surgery and how to prepare for and handle it. Then, we will head back to Denton, TX and Sanger, TX to gather our things, visit Lee and his family, and then on Friday head back home to Idaho. My pain meds are working much better, though still being adjusted. I hope to minimize the side-effects of the patch and maximize the pain control through to surgery at this point.
A week from now we will make the final decision, and quite likely then, three weeks later based on what Dr. Rhines schedules, we will be back in Houston early in March for this suregry.
If there is more info, I will update on wednesday.
Pardon this long update...but I know many people have been waiting.
Again, thanks to all for your faith and prayers on our behalf, The Lord's Hand is in this and His love and support are with us, and we thank all who have prayed that it be such to this opoint, because those prayers are being answered.
Sincerely, in love and in Christ,
Jeff