At Long Awaited Last

I haven't reported anything for a while, mainly because there just wasn't anything to report. Well now there is. At long last the transplant has been scheduled. We are due to be in Chicago on Aug. 8 to begin the injections to promote stem cell growth. The stem cells will be harvested between Aug. 13 and 15, with the actual transplant scheduled for Aug. 22. In a slight change of plans, they asked that we remain in Chicago for the entire process, so we will be living in Chicago until about mid Sept. All we have to do now is find a place to live. All the prayers are about to pay off. I do realize that this is not the end of this journey, but the beginning. There is a long road ahead, but with your continued prayers I am sure the journey will be easier. I am slowly learning more and more to place my trust in God, and to allow God to guide this journey.
Thanks for your prayers and support.

Deacon John
July 24, 2008
St. Peregrine, Pray for Us.

Getting Closer (maybe)

On Tuesday I had my second to (probably, hopefully) last round of chemo prior to preparation for the transplant. We also had an appointment with the oncologist. He agreed that with the disappearance of Poindexter the tumor there shouldn’t be any need for more chemo before moving ahead with the autologous stem cell transplant. Later on Tuesday I received a call from the transplant coordinator in Chicago. We spoke about what is happening, Poindexter’s disappearance and failure to return, the probability that three rounds of Velcade is enough, and moving forward with the transplant. She said that she was going into a meeting in half an hour and that my case would be discussed. The only drawback is the need to repeat all of the qualifying testing that had been done previously in May. She said she would fax a list of those tests to my oncologist. I am going to follow up and make sure they have hat list and get the tests scheduled by Monday. If they don’t get the list, I plan on having it faxed to me, and I will hand carry it in to the doctor on Friday when I go for my (probably, hopefully) last round of chemo prior to transplant preparation. Even with this haste, it still looks like the end of July is the best case scenario for getting started. But, we may be getting closer!!As I have said before, I’ve never looked so forward to feeling bad, but if remission is the result, I am ready to feel as bad as necessary. I thank God for helping me through this, I know God is leading this journey, at least when I am smart enough to get out of the way.
Deacon John
June 25, 2008
St. Peregrine, Pray for Us

Midpoint

Yesterday was day 8 of the second 21 day cycle of Velcade therapy. This is the halfway point of the three cycles that are planned. So far, Velcade seems to be doing the job. Poindexter the tumor has completely disappeared. Even during the ten day respite of the first cycle, Poindexter has not shown any signs of growing back. Maybe, just maybe, the transplant will really happen once the three rounds of Chemo with Velcade are complete. The third cycle, including the ten day respite, should end on July 3. Seems appropriate, maybe i can declare my near independence from MM (OK, just near remission) on July 4. God and the transplant team willing, I hope we can start by mid-July. This is, of course, just the beginning of this journey, not the end. But it is a beginning. A beginning that with God's help will have a good end, twenty or thirty years from now!!
Deacon John
June 4, 2008
St. Peregrine,
Pray for us

Cycle 2

Tomorrow I start the second cycle of chemo with Velcade. There really weren’t any bad side effects, just a bit of fatigue, so even though the drug is administered more often, things have gone fairly well. I am not getting overly optimistic yet, but after the first cycle, including the 10 day respite, Poindexter the tumor is gone. For the first time in almost a year there is no lump sitting in the middle of my chest. I’m really not quite sure how to react. Poindexter and the new spot I found have both vanished. It would seem that Velcade is doing what it is supposed to. So, ok, maybe delaying the transplant is working out for the best. If Poindexter stays gone through the next two cycles, and perhaps a week or two after that, the transplant process should begin. So maybe by mid-July we can get started getting this thing into remission. I know the road ahead is still going to be rough, and the transplant itself is going to be a difficult time, but I can’t say I have ever looked forward more to feeling lousy. It’s seems to be the price for remission, and it’s a price I am ready and willing to pay. I was having a hard time with patience, but once again God has led me where I need to be. Maybe one of these days I'll really learn to trust!
Deacon John
The Feast of St. Phillip Neri
May 26, 2008
St. Peregrine, pray for us

Chemo Round 5… or … 1A

I started my new chemo sessions yesterday. The drugs have changed for this round, so perhaps this should be 1A as opposed to 5. The drugs being used this time are Velcade and Decadron. The chemo sessions will be more intensive this time around. Before the drugs were administered once every 28 days. These drugs will be administered in a 21 day cycle, with me receiving the drugs on days 1,4,8,and 11, followed by a ten day break. This constitutes the 21 day cycle. It’s only been one day, so no ill effects yet. The major side affect listed is fatigue, so I think I can live with that. Velcade, from all accounts is quite effective and is a good set-up for the autologous stem cell transplant. The current plan is to complete 3 cycles. If I counted correctly the third cycle should end on July 3. I don’t know how long after that the transplant team will want to wait. Not long I hope. I am becoming more resigned to following this path, I really just want to get on with the transplant and hopefully full remission. I just keep praying, placing my hope and trust in God who is always good. I am certain that all of this is happening for a reason, for some purpose that I just don’t know yet. If my situation helps someone else, or leads me to a better understanding of trust in God, or both, than it is all worth it. Someone asked me if I felt like Job, with all of the medical concerns I’ve developed over the past few years. I thought and decided that, no, I felt sort of like Paul in his statement in Philippians 1:22-25.
If I go on living in the flesh, that means fruitful labor for me. And I do not know which I shall choose. I am caught between the two. I long to depart this life and be with Christ, (for) that is far better. Yet that I remain (in) the flesh is more necessary for your benefit. And this I know with confidence, that I shall remain and continue in the service of all of you for your progress and joy in the faith,
I don’t really want to leave the body just yet, there is still so much I want to accomplish. Yet being with Christ ain’t a bad thing either. I figure that no matter what happens, I’m a winner either way.

Deacon John
Wednesday in the 7th Week of Easter
May 7, 2008

Now That I've Had Some Time

Since being told last Thursday that the autologous stem cell trans plant would have to be delayed for a few months, I’ve had a little time to decompress and get used to the idea. I don’t know quite how to describe the way I felt. OK, this past weekend in my hometown of Louisville, the Kentucky Derby was run. What would it be like if the horses were saddled, ready to go, the jockeys mentally prepared to ride, when suddenly someone comes in and says the race is being delayed for a couple of months. It would be a huge letdown. That describes how I felt when I was told the transplant was being delayed. I was not pleased at the prospect of 2 or 3 more months of chemo rather than the transplant. The transplant, from what research I have done, seems to be the best way to reach remission. The drugs available for treatment of Multiple Myeloma don’t seem to be nearly as effective in bringing about remission. One drug mentioned by the doctor in Chicago was Velcade. Velcade does seem to be a good treatment for MM, and it does not appear to interfere with the potential for an autologous transplant following Velcade therapy. There are some potentially nasty side affects, but they don’t appear to be any worse than what I have faced previously. So, I’m calling my doctor here in Louisville, again, tomorrow. I want to get this thing started. I’ve never been the most patient person, and this is really testing my limits. So I will do the only thing I can, turn to God, pray for patience, and the grace and strength to get through this phase of the treatment.

Deacon John
The Solemnity of the Ascension of the Lord
May 4, 2008
St. Peregrine, pray for us.

Still Waiting

All of the tests required by the insurance company were completed last Monday. This past Tues. April 29, the Oncologist here in Louisville went over the results of the tests with us. Everything was good. The bone marrow biopsy indicated that the cancer has not metastasized and is not wide spread throughout the marrow. The blood tests were good, even the pulmonary function tests were good, despite the difficulty I had breathing due to spring allergies. All of this information was forwarded to the University of Chicago Hospital, who will send it to the insurance company. We even completed a psycho-social evaluation by phone, and I think we passed, somehow. I wanted to use my favorite line from the old television series Night Court, quoting the judge’s father who had been in a psychiatric hospital and say, “but I’m feeling much better now,” but I decided the interviewer would fail to see the humor. Oh, well. We spoke to the Nurse Administrator in Chicago and she said it could be two weeks.

During the time since my last chemo, Poindexter the Tumor has grown back to his original size, if not larger. I also found another small knot in my chest. We called the transplant team in Chicago in case these were important developments. Apparently they are. I just spoke with Dr. Cohen in Chicago. This call came in as I was typing this. He is going to recommend 2 or 3 more rounds of chemo before having the transplant. This will push the transplant back into August or September. To say that I am disappointed would be an understatement. But Dr. Cohen said the disease needs to be under control before the transplant in order to give the transplant the best chance to be successful. Ah well, another chance to learn patience. God has led us so far, and my trust hasn’t failed, yet. It is, however, getting difficult. Keep praying!

Deacon John
Feast of St. Joseph the Worker and the Feast of St. Peregrine
May 1, 2008
St. Peregrine
Pray for us.