Jeff continues in my thoughts and prayers. May the Lord strengthen him, and restore him to vigorous health and well-being.
I am reading each and each gives me strength and I thank everyone, from the bottom of my heart for your thoughts, prayers, and faith on behalf of me, for Gail, and for our family.
What a difference a few days can make...along with a few answers to prayer.
Yesterday I received a call from Dr. Rhines first thing in the morning. He spent about an hour on the phone with me detailing all that he had been doing these last four weeks. Although I had heard from his office and Advanced Practice Nurse, Gisela, on several occasions, where lots of good info had been communicated, this was the first time Dr. Rhines and I had spoken directly since we met him for the long 2+ hour meeting in Houston.
He apologized for the delay, indicating that he had been out of town and had contacted a lot of people about me and my case and that he did not want to have such a conversation on his cell phone while traveling. I thanked him for calling and indicated that there was no need for apology. He was very busy, and in addition to his research and being the head of his department at MD Anderson, he has many patients, all of whom have difficulties and are in at least as dire straits as I.
Anyhow, the jest was that despite the feelings of many people (Drs) he had spoken with regarding my case over the fact that my tumor has already spread to my Ilium from my sacrum and could mean that it was too late for the type of surgery necessary to remove the principle tumor...concerns that he shares...that he had determined that there are still two options for treatment I should consider and make a decision on.
The first choice remains the major surgery to take my sacrum that has been described in detail on this journal in the past. The down side of this decision would be if the cancer has already spread to soft tissue and organs, than I will go through a very difficult and painful surgical procedure (what he termed as "big as it gets"), and long recovery procedure with no lasting benefit (that is, if we discovered soon thereafter that the cancer had in fact already spread). The upside of this surgery is that it is the only medical path available in the US to potentially cure my condition, if the cancer has not spread to those other areas yet.
Has it spread? The Dr. indicated that at this stage we just don't know. They cannot see it. The pathology indicates it may not have...but since there are those two other small spots in bone material, they cannot rule it out.
The second option is to treat the sacrum and the entire tumor with proton radiation upfront. This will not kill or completely stop it...but it would retard it and slow it down. Then wait 6-9 months and take a look again. If the cancer is not spreading to the other areas, then do the surgery at that point with a better feeling that it has not and is not about to spread. The downside of this choice is that if it has not already spread, we add 6-9 months of time where it would have the additional opportunity to do so. The upside is that this method would preserve my neurological function (bowel and bladder) for a longer period and not have me undergo that painful, difficult major surgery that would take those functions if the cancer had indeed already spread.
My own view is that the first option is the decision we in essence already made and that it is the only option that is directed immediately towards a potential curative solution (even if the odds are not great) that is available. The second option is already starting down the palliative path and almost presumes that the cancer has spread and that the hope for a curative treatment is past.
We are going to pray about this and decide within the next day which way to go. We ask for your thoughts and prayers on our behalf and thank you all, from the bottom of our hearts for your acts of faith and prayer to date. They have most certainly helped and given us additional strength to face this difficulty.
In conjunction with this, let me share a faith promoting experience associated with events leading up to the call.
In our faith, we believe that Jesus Christ remains a God of miracles, both body and soul. We believe in administering to the sick and afflicted. This last weekend I was pretty sick trying to get back into "sync" with my pain meds as I explained in the last entry. In the midst of that, I was also low in spirits because of the news from last week that so many Drs were thinking that my condition did not warrant surgery and may be too late for that.
On Sunday, at the suggestion of my wife and friends, I asked to be administered to and blessed by priesthood holders in our church. It is a "lay" priesthood, but we believe through faith that we can call on God, in Jesus Christ name, for the help, strength, and even healing we need, according to His will. Two brethren came over, one what we call our "home teacher". In our faith we have two men and two women who are assigned to several families within our congregation to minister to their needs as best they can. All families and individuals are covered. I myself have several families that I try and help.
Anyhow, I was anointed with oil, hands were laid on my head, and in the name of Jesus Christ I received a blessing. It was in the quiet and peace of our home. It was not dramatic, loud, or earth shattering. I was not told to rise up and walk that I had been cured (though with God in Heaven, that is certainly possible). Words of comfort were spoken to me. That through my faith I would see the path ahead. Very specifically, I was told that my Dr. would contact me and give me the details I needed to make the right decisions according to God's will.
At that point, I had not heard from Dr. Rhines in 4 weeks, and based on the info coming to us, I did not necessarily expect to hear from him. I figured that since so many were thinking this was too late for surgery that I would be referred back to a medical oncologist for palliative treatment to make me comfortable and try and fight the cancer once it did spread.
I was wrong. Dr. Rhines had been working hard the whole time on my account, doing research, gathering info, talking to Drs all over the country and world, and was gathering information so he and Gail and I could make the most informed and best decision possible. The Lord honored that blessing. The next day after my blessing, at the earliest hour possible while at work, Dr. Rhines called and did exactly what I had been told he would do.
Now, God in Heaven knew that was going to happen. He knows Dr. Rhines heart just like He knows all of us. He simply let that act of faith communicate it to me and help comfort me at a time this weekend when I needed it.
Now, I cannot say where this leads at this point, other than to know that God in Heaven's hand is in it and it will work towards His will. I pray I can stay strong and be a good witness of His will, whatever it holds for me. I know God in Heaven and His Son Jesus Christ are aware of each of us and our needs, and I know they will make known to us that concern and love as we seek them out.
That doesn't mean things will be easy...or everything solved exactly as we would desire at that moment. it does mean that things and events will work out according to His will and what is in the long term best interests for us and our loved ones.
This is a life-threatening, very difficult disease and time in my life. The pain is still there. Anxiety is still there. The upcoming surgery, should we in fact choose that route, will be as difficult and painful physically as anything I have experienced in life. The surgery itself or infection afterwards could take my life.
In the end, the surgery offers medical hope. But whether that hope turns into the reality of a long term cure or not, the Hope of Life Eternal through Christ Jesus will stand through any malady, disease, hardship, or difficulty. It is up to us to accept His gift in our life, and His name in our heart, and then stand firm and true to that decision as it changes our life and the way we live it. May His will be done in each of our life's and may we each seek to know, understand, and accept that will and then witness to one another and others in an effort to strengthen and help those around us.
I will make an entry in the journal tomorrow or the next day as soon as we make our decision and inform Dr. Rhines and MD Anderson. Either option will see us back in Houston towards the end of March to start the respective treatment.
As a side note. Dr. Rhines did look deeper into the Carbon Ion Radiation treatment being conducted in Japan and Germany. He indicated that with the massive amounts of radiation that they can deliver so accurately that there is great hope with that procedure. He also indicated that since my tumor has already surrounded several nerve roots critical to my bowel and bladder function, that in order to treat the entire tumor, that radiation would almost certainly destroy those nerve roots as surely as if he cut them out. The upside then would be that I could undergo that with no major incisions and the difficulty and recovery major surgery brings. The downsides are pretty significant. In addition to its cost and my US insurance not covering it, there is not enough data to say that if that treatment were conducted, that while the tumor stopped growing and slowly regressed, that it could not spread afterwards...which is a big risk to take after the fact.
The best chance for keeping it from spreading...if it hasn't already done so in which case neither surgery nor CIR will work anyway...is to remove the tumor. And now, that door, which I had thought was closed, is open again for us to consider.
Sincerely and with love in Christ,
Jeff Head