The Next Step...

A new phase of my treatment is about to begin. On Thursday Feb. 28 we have an appointment with Dr. Todd Zimmerman, head of Myeloma treatment at the University of Chicago Hospital. This is for evaluation, hopefully to determine what steps to take in treating this disease. Dr. Zimmerman is by all accounts one of the leaders in research in the field of Multiple Myeloma. Perhaps I’m reading too much into it, but I find it quite encouraging to be seen by someone like Dr. Zimmerman. I do believe God is guiding this journey, leading us to the best possible place for treatment, long-term remission, and hopefully, one day, a cure. Keep praying!!

Deacon John
Feb. 18, 2008

Decision

After the last visit to the Oncologist, we were faced with the necessity of deciding where to go to continue treatment. Some options were given to us, but everything was left in our hands. After much research, and thanks to those of you who assisted in that research, after much soul-searching, and after much prayer, we have decided on the University Of Chicago Hospital. We found that they have a center dedicated to multiple myeloma, and that the head of the center is on the board of the Multiple Myeloma Research Foundation. There is also a strong connection to the Dana Farber Institute in Boston and their Multiple Myeloma Research center. Dr. Zimmerman at Chicago apparently has strong ties to Dr. Anderson in Boston, who is one of the leading Myeloma researchers in the world. When originally faced with this decision we did feel overwhelmed, not knowing where to turn. Then we made the obvious turn, and asked for help, help from friends and help from God. I believe that God has led us to this place, that this is the place best suited to treat this disease. The procedure used in this treatment is an autologous transplant, using my own stem cells. This is apparently the current standard of treatment for Multiple Myeloma. So, for the moment, there is no need for a bone marrow donor, at least not yet. The possibility of that need could rise again. One thing I may need is blood donors, so keep that in mind, I would like a blood supply that I can trust! How fast all of this will happen is still unknown. My insurance company is talking to the hospital, hopefully working out the details. I do know that this procedure will not take as long as a transplant from an outside donor. I will have to go there for two days for intensive chemotherapy, then return home for two weeks and inject my self with a hormone to increase stem cell production. I would then return to Chicago and have the stem cells harvested. I would then return home while the stem cells are cleaned for re-implantation. Two weeks later I go back to Chicago, have another round of intensive chemo to kill off all remaining cancer cells, then have the stem cells implanted to re-grow bone marrow. This should lead to remission. It’s a big step into a dark unknown, but I feel more hopeful now than I have for a while. I believe God has led me here, and I trust this is the right place, the right team, and the right time.

When you come to the edge of all the light you know and are about to step off into the darkness of the unknown, faith is knowing that one of two things will happen: there will be something solid to stand on, or you will be taught how to fly.
Patrick Overton

St. Peregrine,
Pray for us
Deacon John
Feb. 15, 2008

Chemo Day

Wednesday Feb. 13 was chemo day, the third cycle in what I thought was a cycle of four. When I was examined by the ARNP prior to starting the session she said “well this puts you half way through.” I immediately asked what that meant. The Oncologist, after my last visit charted that there will be six cycles of chemo. All along we had been told there would be four cycles. The Nurse-Practitioner was unsure why the change was there, or if it even was a change. I must admit I was confused, and not pleased. I had felt rushed to arrange the next step of the treatment, and now that may get put off for two more months! It could be July or August before the transplant occurs. If this is the way it needs to be that is fine, but I sure wish someone had told me. I was mentally, emotionally, and spiritually prepared for one thing, and I feel now like I have to start all over again. So, I pray, and wait, and hope and trust that all of these folks know what is best. This round of chemo took much longer, 61/2 hours, due to the addition of a new drug, Aredia, a drug designed to strengthen bones. Hopefully this will keep me from breaking anything by keeping my bones healthy. My plan for the moment is to keep praying, and trusting that God is leading me on the right path. All I can do is step into the dark and have faith. Keep praying!!

St. Peregrine, pray for us.
Deacon John
Feb. 15, 2008

Pondering Poindexter

When I was first diagnosed with Multiple Myeloma, the one thing I really wanted to do was make the tumor on my chest go away. It was big, it was ugly, it was growing, and I just wanted it gone. I knew that wouldn’t make things better, but I still wanted it to go. Indeed, that tumor is what I first named Poindexter, a name that has come to encompass the entire disease. I was thrilled when on my first visit to the oncologist he looked at Poindexter and said, “let’s kill that thing.” After my first round of chemo Poindexter did shrink, nearly going away completely. I was thrilled, at least until it started coming back. The second chemo has once again made the tumor shrink, and this time it seems to be coming back more slowly. I was again glad to see it go, but then, after researching Multiple Myeloma a bit, I began to wonder if Poindexter, the tumor, hadn’t done me a favor. This disease could have smoldered undetected for years, doing who knows what kind of damage. This may have gone undetected until, well until it may have been too late. As much as I hate to admit it, Poindexter may have done me a favor. This tumor may indeed have been God’s grace, alerting me to the fact that something was drastically wrong. If not for Poindexter, who knows. I do thank God that I found that I have this disease in time to be treated. I suppose, maybe, in some way, I owe Poindexter a debt of gratitude, maybe. But I still want him GONE.

St Peregrine,
Pray for us
Deacon John
Feb. 4, 2008