Not Good News
Jeff Head UPDATE at 1006
Well, I wish I did not have to write this update, but the situation is as it is and I need to document it.
I had been waiting a few days to write it, hoping that the news might improve, but it does not appear to be going to do so.
We were informed earlier in the week from MD Anderson, by the Advanced Practice Nurse for Dr. Rhines that the tumor board consensus was that the surgery would not benefit me. This is a significant departue from what we were preparing for.
The essense of that message is that they feel it is too late for the surgery. Since the cancer has already spread to my illium, the feeling is that it has already started metestizing into a more aggressive form which is precisely what the major surgery is meant to prevent.
My feeling and hope was that since it had not spread to any organs or soft tissue, that the spread to the bone could be controlled. But these individuals are the professionals who do this for a living and who have seen and dealt with many, many such cases. I have to respect what they are saying, knowing it is not the message they want to deliver either.
So, we are now waiting to see what palliative treatment (which is a treatment regiment that is geared towards trying to slow furute spread and make me as comfortable as possible) indicates.
In addition, I now intend to personally go all out (if I feel up to it) to trying to contact Japan and Germany about the Carbon Ion Radiation tretment they have developed and are using. I also want to present to MD Anderson the idea to use me as a research project. I am an individual with a sacral chordoma that they do not feel the principle US treatment of resection can benefit. I have had no other direct treatment. What better subject for a baseline than that to send over and try the Carbon Ion Radiation treatment that the Janaese and Germans are using that is not yet approved here in America? I know these institutions in the US are aware of it, and it is certainly not a "lark" or "quack" treatment since the accelerators used in Japan and Germany (each nation now has two of them) cost well over 200 million dollars each.
So, those appear to be my choices at this point. We hope to be in further contatc with MD Anderson next week.
In the mean time I have been back at work and will continue to do so as long as I can and according to whatever treatment plan they now come up with.
Added to this, I had my Fentnayl patches increased this last week on Wednesday to 37 mgr per hour. On Friday I was very sick and so decided to go back to 25 mgr per hour (simply by not adding the 2nd patch Friday night when I was due for a change). This morning I feel a little better, but am still very fatigued, weak, short of breath, and a little sick.
Again, thanks so much to all who are exerting their faith on our behalf and praying for us. Those prayers and that faith mean more than I can say...on a very real and daily basis. Thank you!
It is, and always has been, in His Hands.
I will write again as I can.
Sincerely and in Christ,
Jeff
Dear Jeff, I am so sorry to hear this news. My ... OUR! ... thoughts and prayers are with you and your family. Your plan sounds like a good one. May God give you the wisdom and information you need as you continue to work on your plans.
Love, hugs, and and best wishes to you in all you are facing, dear friend.
We’re still pulling for you, Jeff.
John R
Miss Emily
God bless you and your family, Jeff. Let me know if I can help. (Translation and research are my talents, besides being licensed in Texas and having room for guests near San Antonio.)
Continued Prayer BUMP
Prayers to continue, Jeff.
We love you and continue to pray for you.
Our prayers continue for you.
Jeff, you and your family will continue to be at the top of my prayer list. My heart breaks to hear this update.
Raising you up in prayer, my brother.
Jeff, You are a blessing and so very dear to all of us.
Your courage and faith humble me.
My prayers are for you and like you said, “It is, and always has been, in His Hands.”
I’m very sorry Jeff. Prayers are continuing.
Prayers ever lifted for you, your family and your medical team. May God bring you all wisdom, and strength to carry you through these hard times, and know that He calls as well, upon many in the FReeper family, to help in whatever way we can.
May God bless you, FRiend,
Tatt
Oh Jeff. I’m sorry to learn of this update but as the mother of a cancer patient I am grateful for your idea and intent to work with MD Anderson and this alternate treatment. I hope it is accepted by them.
My prayers continue for you and your family, for strength, healing and peace.
Dear Jeff, I am so sorry to hear this. I will continue to keep you in my prayers. I admire your bravery and your faith and it will get you through. May God hold you in His healing hands and direct this storm.
Praying for you, Jeff, at this critical time when you are deciding whether to seek treatment abroad or not. May the Holy Spirit fill you with His wisdom and knowledge to help you in your decision.
It is wise not to take more fentanyl than you need at this time. It is habit-forming (my son has been on the patch for 7 years since a bad motorcycle accident). He has always used less than prescribed,so that he can function fully at work.
Continued prayers for you and your family. You are a good man.
Jeff, I am deeply saddened to read this report. You have been a fellow traveler of mine for a number of years. I can look back and remember many times when you have spoken words that I was thinking, and that endeared me to you on message, and to you as a person I knew I could plan on supporting all the time.
You are often in my thoughts. I care a great deal about what is taking place with you. I join you in trusting in our Heavenly Father’s grand infinite plan. I can honestly say that this is one time when I am not enjoying how that plan is playing out, but I love and trust Him even so.
You will continue to be in my thoughts and prayers.