Whew

Just about two weeks ago I began to experience some pain in my right shoulder, in just about the same spot as one of the tumors had been. I wasn’t sure what to think, I thought it was probably nothing, but, I didn’t want to be wrong. I had an appointment to see my oncologist in late January, but I began to think I shouldn’t wait that long. I called the oncologist’s office and apparently they didn’t think I should wait either. I went in on Dec. 22 for blood tests and had to wait until today to get the results. Everything is fine. All of my blood work was in the normal range. The proteins that are markers for this cancer were either normal or below normal. Once again I felt that great sense of relief, even though I wasn’t really worried…alright I was worried. It scared the pants off me. I didn’t want to believe I had gone through all of the chemo and the transplant just to have it fail so soon. I was getting myself ready mentally for bad news. I was preparing to fight again, but thanks be to God I don’t have to. Indeed, I don’t have to go back to the doctor until May. I understand the nature of this disease, I know that eventually the news will be bad. But God willing that can wait 20 or 30 years. I am just grateful for this day. I truly believe this, I woke up today and I am breathing. The rest is God’s grace.
Deacon John
Sixth Day in the Octave of Christmas
Dec. 30, 2008

One Year

One year. Yesterday, Dec. 7, marks one year. Dec. 7, 2007, that was the day I was first diagnosed with cancer. The doctor did not have yet the specific form of cancer, tests were still being done. I really believe she only told me because I made her. I think I forced her hand by telling her I was going out of town for a week, and really needed to know something. So she told me. Those of you who have experienced this understand what I mean when I say time stopped, and suddenly the entire world changed. Nothing, absolutely nothing, could ever be the same again. Everything is experienced through the filter of this disease. Even now, one year later, after all that has happened in this year, even though I received an autologous stem cell transplant that has pushed this cancer into remission, everything is seen through the filter of cancer. I am not the person I was one year ago. Yes, I would have, hopefully, changed during this past year even without a cancer diagnosis. But how I changed, who I have become in this past year, is because of Multiple Myeloma. I am not the person I was, nor am I the person I would have been. I am who I am today because of the experiences of this year. Who is that person? I’m not always sure, but I did find out one thing. The person I have become is stronger than I thought, a survivor. I do know that this strength did not come just from within me, but from God. Strength was found in faith and in the love, prayer, and support of family, friends, and people I do not even know. My wife and I spent this past weekend at St. Meinrad Archabbey (one of my favorite places in the world) with dear and close friends, people I love more than I can say. We celebrated remission, we celebrated each other, we celebrated our friendship and love. I celebrate that thanks to their love, support and prayers, thanks to the love of my family, my sisters, my brother, their families, my mother’s prayers, and the prayers of countless others, I can today, one year later stand and say I am a survivor.

Deacon John
The Solemnity of the Immaculate Conception of the Blessed Virgin Mary
Dec. 8, 2008

Birthday

Today is my birthday. Normally I would not take much note of it, indeed I had just about forgotten that today is my birthday until my wife reminded me. I guess I should take more notice, however, since it is a special birthday. No, not because of my age, but because I am having a birthday at all. Just a little over a year ago, I wasn’t so sure I would have any more days like today to celebrate. Yet here I am, a survivor, a cancer survivor. Just being able to say that brings up emotions I can’t describe. Joy, relief, some lingering fear, gratitude. Gratitude to all who prayed for me, gratitude to God for the grace granted me. I am grateful for the miracle of medicine that made this birthday possible. I am grateful beyond words to God for this second chance at life. My cancer, Poindexter, along with my hair, is in complete remission. Only the hair is coming back!
Deacon John
The Feast of St. Leo the Great
Nov. 10, 2008
St. Peregrine, Pray for us

Continuing the Journey

To quote the prophet Jerry Garcia, “what a long, strange trip it’s been.” I visited the oncologist on Thursday to get the results of the tests done as follow-up to the autologous stem cell transplant. The level of the immunoglobulins in my blood and urine, the protein markers that indicate the presence of the cancer, were all either normal or low. There was also no indication of the cancer in my bone marrow. So all that has transpired over the past year, all of the tests, the chemotherapy, the transplant itself, have done what they were intended to do. As my doctor said, this cancer, in the technical term used, is in complete remission. I can’t describe how I felt when I heard those words. Though I was always confident this would happen, the fear that things would go wrong was always there. I felt a combination of joy and relief, and gratitude to God. The new goal is to avoid remission within the first six months. The oncologist said this would be, I couldn’t keep up with how many times he said bad. Obviously relapse this soon would lead to a poor prognosis. The longer I go without relapsing, the better the chances of fighting off the cancer are. So now I will see the oncologist every three months for tests, blood and urine, to check for those protein markers, to make sure they remain low or normal. The journey is not over, but so far the journey has been successful. The only other problem I face now is the loss of the antibodies that had been in my immune system. The oncologist said that I am like a baby, and I will catch everything going around until I develop new antibodies. I also must be immunized again. Starting next Feb. I must get all of the vaccinations we received as children, polio, measles, etc. That’s ok, like the loss of my hair it’s a small price to pay for remission. Thanks be to God for this outcome.
Deacon John
Oct. 25, 2008
St. Peregrine, Pray for Us

Still Learning

Since coming home I have felt pretty good, and I think I began to believe I was invincible. I am learning, however that there is a difference between recovered and recovering. I went back to work last week, and despite being urged to work only part time, I stubbornly worked full days. On Sunday of this week I served at Mass in my parish, worked a half day at my job, where I led a prayer service, then that evening conducted a meeting of deacons in the region I represent on the Archdiocesan Deacon Council. I must admit that by Sunday night I was tired. Late that evening I got sick, really sick. I began running a low grade temperature, felt totally drained, and Monday morning simply could not get out of bed. It finally occurred to me that maybe I was doing a little too much. OK, maybe a lot too much. I do believe God sent me a message. No matter how good I may feel, I am not completely recovered. That will take time, and I must allow for that time. After all that has happened, I guess I still need to learn patience. Maybe one of these days the message will finally sink in.
Deacon John
Oct. 22, 2008
St. Peregrine, Pray for us

The End of the Beginning

One year ago this month, in Oct. of 2007, I noticed a growth at the end of my sternum, right in the middle of my chest. At first it was small, so I thought I could simply wait until my next physical to have it checked out. Probably just a cyst, right? Before the month ended this anomalous spot grew exponentially, reaching the size of a baseball. Obviously this could not wait, so I went to the doctor and thus began a series of tests that eventually led to a diagnosis. On Dec. 7 of 2007 I went to my doctor and she finally told me that the growth was indeed cancer. She sent me to an oncologist who diagnosed this cancer as Multiple Myeloma, a cancer of the plasma cells in the blood. I was told that this disease is incurable, but treatable. The course of treatment prescribed was an autologous stem cell transplant, a procedure that would use stem cells from my own blood to replace my immune system after course of chemotherapy destroyed the cancer cells and everything else as well. This treatment required travel, so my wife and I chose to have this done in Chicago, at the University Of Chicago Medical Center, which specializes in treating Multiple Myeloma. After several rounds of chemotherapy here in Louisville, and after a few setbacks, the transplant finally occurred on Aug. 25 this year. I spent three weeks in the hospital, sometimes quite sick, but most often not feeling too bad. After being released from the hospital we spent two more weeks in Chicago until we were released to return to Louisville, where final follow up tests have been conducted. The last blood test in Chicago showed no signs of the proteins produced when the cancer is present. Tests done here in Louisville have produced the same result. One of the tests done just this past Tuesday was another bone marrow biopsy. The last one, done before the transplant, showed no sign of the cancer in my bone marrow. My oncologist said that barring any strange result in this last test, it is fair to say that this cancer is in remission. I firmly believe that God led me to the right doctors, the right hospital, and the right treatment. I am thankful to our gracious God for this outcome, but I also know that remission does not mean cured. There is no cure. But there was, and is, treatment and hope. I know this journey is not over, that this is in reality the beginning of a new journey, a new life, a life for which I am grateful. I understand how great a gift this is. May God continue to guide me as I use this great gift, and may I be smart enough to listen.
Deacon John
Oct 17, 2008
St. Peregrine. Pray for us

Home at Last

We finally got to come home to Louisville last Wednesday, Sept. 24. I probably should have written sooner, but I have spent the past week just basking in the joy of being home. There are more tests to be done here in Louisville, but the last blood tests done in Chicago were quite encouraging. If all the other tests are as encouraging, then it may be that the transplant has worked and the cancer is in remission. I understand that although this has been a long journey, it is not yet complete. I do believe that God has been guiding me on this journey, leading me to the best place for treatment. I do understand that although remission may have been achieved, the threat of this cancer has not gone away. I will live with this threat for the rest of my life. I can live with this because I know that God is with me on this journey and in this struggle. My trust is and must always be in God. Only then can I make this journey, without (much) fear. Thank you for your prayers, they have been felt.
Deacon John
Feast of St. Theresa of the Child Jesus, Doctor of the Church
Oct. 1, 2009

Light Show

I am not, nor have I ever tried to be, a poet. I have never written poetry before. This started to come to me in the hospital, while I was still wondering about the efficacy of the transplant. I finally finished it and wrote it down a couple of weeks ago, and I just now got the nerve to post it for the world to see.

Light Show
Dark hospital bed,
alone, lying cold,
wondering if I
will ever grow old

enough to know why
this is happening
to me

Hard hospital bed,
awake, lying cold
no revealation;
then realization
that I will grow old

enough when I grow
into the warm, soft
Light of the One who
made me

Deacon John
Feast of the Exaltation of the Cross
2009

Free at last, Free at last

Saturday, after three very long weeks, I was finally released from the hospital. The autologous stem cell transplant was performed on Aug. 25. Despite some minor setbacks things generally went quite well. I feel good, and I fell even better now that I am out of the hospital. I saw the doctor again on Wednesday and was told that after some more blood tests next week I can go home to Louisville. My blood counts look good, and all further testing can be done at home. All I can say to that is Alleluia!!! God is good indeed. I know this journey is not over, in many ways it is just beginning. I am more convinced than ever that our gracious God is with me every step of the way.
Deacon John
Sept. 19, 2008
St. Peregrine, Pray for us

It's Time

As I write this I am back in Chicago. Tomorrow morning the hospital will call, telling me they are ready for me to come in and begin the chemo in preparation for the autologous stem cell transplant. This treatment is the best hope for putting this cancer into remission. It's been a long journey to this point, since being diagnosed with Multiple Myeloma in Dec. I have to admit, even knowing that this is the best treatment available, and that I am receiving this treatment in one of the best places possible, it is still a frightening prospect. I am prepared, however, ready to do what is necessary to get this as behind me as possible. My trust is that God has led me to this point, and I keep my faith in God, believing that I am indeed in God's hands. This may be the last update for a while, I don't know how much access I will have to a computer after entering the hospital tomorrow, or if I will bewell enough to post anything. I will get back on here as soon as I can. Thank you for you prayers, know that you are in my prayers as well.
St. Peregrine, Pray for us.
Deacon John
Aug. 21, 2008

Down the Home Stretch

As Dorothy said in the Wizard of Oz, there's no place like home. Stem cells were harvested on Wed. Aug. 13th. Thankfully enough were collected that I don't have to go through that experience again. Since the transplant can't happen right away, we were told we could go home. It is good to be home even if it is only for a few days. This is a week of rest, to give my body a break before continuing with the transplant process. The schedule has been finalized. I will be admitted to the hospital on Friday Aug. 22. The super chemo will be administered on that day and Saturday the 23rd. Sunday, appropriately, will be a day of rest. The transplant, the re-infusion of the collected stem cells, will occur on Monday Aug. 25th. I know I will be in the hospital for at least 3 weeks. I do not know how much of that time will be in isolation. It is good just to know precisely what will happen next. My job this week is to prepare myself mentally and spiritually for the transplant and the recovery period to follow. This will be a week of prayer and contemplation, working to be prepared for what will be a difficult time. No matter the difficulty, this must happen if remission is to be achieved. So this week I pray, read, and get ready, reminding myself that even in these difficult times God is with me. We will leave to return to Chicago on Thursday the 21st.
St. Peregrine, Pray for Us
Deacon John
Saturday Aug 16, 2008

Getting Started

Today I received the first injections of neupogen, a drug designed to stimulate stem cell production. The only draw back to neupogen is that the main side affect is severe bone pain. So if we are going to see any of Chicago, I guess we shoud do it today or over the weekend, before the pain starts. I will receive this drug twice a day for 5 days. The pain should not begin, if it does, until late in the process. So I should be ok until Monday or Tuesday. On Wednesday the harvesting of the stem cells should begin. After a small fight with the insurance company about covering these injections, things were worked out so the transplant process would not be delayed. Thanks to God for answering our prayers that this insurance difficulty be resolved quickly. So, we are well on our way and will hopefully have the transplant as scheduled on Aug. 22. We are relying on God now to guide through this process. So far we have done well following God's lead. All we need now is the grace to continue to do so.
Deacon John
The Feast of St. Dominic
Aug. 8, 2008
St. Peregrine and St. Dominic,
Pray for us

Getting on With It

The date for getting on with the transplant has been set, and I am looking forward to it, but it is frightening as well. For some strange reason, the nearness of this procedure makes everything seem more real. Yes, I’ve been through several rounds of chemo, thought a lot about what is happening, cried, screamed, gotten angry, and prayed. Yet this event, this transplant, makes everything seem, I don’t know, like it is really happening to me. This is serious, I could die, not from the procedure, but from this disease, cancer. Cancer is always something that happens to someone else. Maybe this transplant is making it really sink in, I am that someone else. This is really happening to ME. Why, I don’t know. Am I happy about it? Absolutely not. Can I change it? Absolutely not. What I can do is accept where I am, what is happening, and pray that God can use this for good. All a lot easier said than done. Especially when you realize that you are the someone else.
St. Peregrine, Pray for us
Deacon John
Feast of St. Ignatius of Loyola
July 31, 2008

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.

Testing 1,2,3, testing

On Thursday April 17 I finally began the tests necessary to qualify me for the autologous stem cell transplant. These tests are primarily for the insurance company, to give them reasonable assurance that I won’t drop dead in the middle of the transplant procedure. We started with a series of blood tests, for which blood had to be drawn, of course. I lost count at somewhere around 9 test tubes of blood. I did ask that they just leave me enough to get by. Next was a bone marrow biopsy, taken from my hip. Not the most pleasant experience, but at least it didn’t last long. On Monday I have to go to the hospital for the remaining tests, a pulmonary function test, a skeletal scan, and a MUGA, some sort of heart test involving dye and more needles. Once the results of these tests are in they will be forwarded to the University of Chicago Hospital and the insurance company. The folks in Chicago have assured me that my insurance company, unlike some others, will respond very quickly. Approval shouldn’t be a problem, so there is still a chance the transplant process can start by the end of April. I certainly hope so, I long to have Poindexter driven into remission and get some semblance of normalcy back into my life. I know the recovery process is slow, but the sooner we start the sooner I get there. I just keep praying for the grace to face this challenge, and the patience to wait for everything to happen. If I learn patience, this whole thing may have been worth it! Keep praying, it definitely helps.
Peace
Deacon John
April 19, 2008
St. Peregrine, pray for us

Learning Patience

I know that this disease is going to take things from me, that it will keep me from doing some things, but there are days I really hate this disease. I had my fourth round of chemo on March 12, and I realized that there was a good chance that the affects of the treatment would be with me during Holy Week. I took off work last Wednesday and Thursday, with Friday as a normal day off I thought I could get plenty of rest and be able to participate in the liturgy through the Triduum. The days of the Triduum are without a doubt my favorite days of the year. I look forward to these days, especially the Easter Vigil. I almost made it. Thursday and Friday I felt pretty good, and was able to take part in the liturgy. I even preached on Good Friday. Saturday I slept in a bit, and felt rested and ready for the Vigil. I particularly wanted to be there when the folks my RCIA class came into the Church. Saturday afternoon, out of the blue, I got sick, really sick. I was, to say the least, distraught. I was also determined that I would not miss this Vigil. Over my wife’s unspoken but obvious objections we went to church to celebrate the Vigil. I was determined to serve in my role as deacon for the Vigil celebration. Sitting in the sacristy, however, it became more and more obvious to me and to those around me that I was not going to be able to function as deacon in this celebration. Practically in tears I admitted that I could not go out on the altar (even though I tried to convince the priest and the other deacon that if I passed out they could just roll me under a pew and keep going) and had to sit this one out. It was finally agreed that I would vest, but stay in the sacristy until time for the baptisms and confirmations for the RCIA group, after which I would return to the sacristy. Afterward my wife told me was proud of me. I asked why, and she said she was proud because I did the right thing, I didn’t stubbornly bull ahead and make myself worse. She was, of course, right. Had I forced the issue and tried to fill my role as deacon I would have just been in the way. The fact that it was so obvious that I was sick would have been a distraction. I missed being able to fill my role, but perhaps God is using this to help me learn patience, patience with this disease, patience with my limitations, patience with myself. This is not the first thing this illness has taken from me, and it definitely won’t be the last, but with the help of God I am slowly learning to live in these new limitations. Maybe I am finally learning to be a patient patient.

Deacon John
Monday in the Octave of Easter
March 24, 2008

Thoughts on Chemo Day - Round 4

Yesterday, March 12, was the fourth, and hopefully last, round of chemo. The transplant team in Chicago seems to think that four rounds are enough, indeed, is the norm for this disease. The Nurse Practioner gave us some hope when she said the doctors tend to go along with what the Transplant team wants. So, with any luck, the transplant process can start by the end of April.

At chemo I met a nun, a bit older, who noticed one of the bags I had that identified me as a deacon. We have had some pleasant conversations about the Church here in the South End of Louisville. She volunteers there providing a healing touch ministry. Yesterday I finally availed myself of that service and found it quite good. It was very relaxing, and I felt better after that than I have for a while. If you ever have a chance to experience this, I suggest it.

Next Wednesday we see our regular Oncologist, Dr. Glisson. Hopefully, he will tell us that we have completed the needed rounds of chemo and that we can move on to the transplant process, hopefully. Again, I have learned in all of this not to count on very much, and to leave with more questions than answers. No matter what happens, I still feel that God is guiding us on this journey. I pray, and remain open to what is coming. Not much of this is in my control, so I rely on God. So far we haven’t been steered wrong. I believe I’ll only go wrong if I get stubborn and think I can do this on my own. So I pray that I find the grace to let God lead me. Thank you all for your prayers, they are a blessing and a great help.

Peace
Deacon John
March 13, 2008
St. Perergrine,
Pray for us.

Chicago, Chicago

Friday, Feb. 29th, we returned from our whirlwind trip to Chicago, after meeting with doctors at the University of Chicago Hospital. It was the end of an eventful week, one that began with sadness when the pastor of our parish died on Monday after suffering a coronary on Sunday night. Wednesday was spent at the funeral home as the other deacon in our parish and I led the Vigil prayers for our pastor. The next morning we left for Chicago and the University of Chicago Hospital. We managed to get from Midway Airport to the hospital, an adventure in itself, where we met with the doctors who work with myeloma patients. I was poked and prodded and answered a zillion questions. The doctors all but said I was a good candidate for an autologous stem cell transplant. They also said that four cycles of chemo could be enough, and that they were going to speak to my oncologist here in Louisville to see if he really wants six cycles. I will have to undergo some further testing to determine my eligibility for the transplant procedure, but that testing can be done in Louisville. If all goes well, and four cycles of chemo are enough, the procedure could begin as soon as the end of April. If it does the entire process could be completed by mid-June. Most of the follow-up testing can also be done here, making the process much easier. With recovery time I could be back to at least semi-normal by late fall. I am greatly encouraged by this, and I believe that God has guided us to the right place. The doctors and nurses could not have been more friendly or more open. They willingly answered all of our questions and encouraged us to call should we think of any more. I am more convinced than ever that this is the place where God has led us. I’m actually looking forward to getting started with this so I can get to remission and begin putting this disease behind me. As for the city of Chicago itself, obviously we didn’t see much, but I never realized that driving is a competitive sport!

St. Peregrine,
Pray for us
Deacon John
March 2, 2008

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

Overwhelmed

I have to tell you, after seeing the Oncologist Tuesday we are now officially overwhelmed. He spoke to us for over an hour about the next phase of treatment and the importance of finding the right place to perform the bone marrow transplant. The overwhelming part is that we have to figure out where that is! He had some guidance, but not nearly enough. He basically said that I was in the driver's seat, that we should contact 4 places, interview at least 2, and then decide. The primary consideration is what any of these facilities is doing in the field of Multiple Myeloma Research. Options, covered by insurance, range from Boston to Seattle. We did actually speak to someone at the Dana Farber Institute in Boston, a leader in myeloma research. They were interested in me for potential entrance into clinical trials in the future, but said that for now I should get the transplant where ever I felt comfortable. We did find a connection between the University of Chicago and Dana Farber, so for the moment they appear to be in the lead, if I can just get them to return my phone calls!! Our prayer now is that God guide us to the right place, where ever that may be.
Deacon John
The Feast of the Conversion of Paul
Jan. 25, 2008

A Philippic on Health Care and Insurance

A philippic may seem a bit strong, probably very unminister like, and possibly even Unchristian, but I don’t believe so. It does describe how I feel. After all, I am a preacher, and I propose to preach.
One of the unfortunate inevitabilities of facing a life-threatening disease is figuring out how all of this vastly expensive treatment is going to get paid for. I begrudge no one their due when it comes to earning a living, after all, I want the best and brightest trying to find cures. Research is expensive, equipment is expensive, testing is expensive, all of these things affect the cost of care. I understand that, but still, how is the average person to get proper care if cost can be a barrier? In my own situation I was worried at first that my insurance may be woefully inadequate. Fortunately, the company I work for carries a special rider to cover costs, at least part of the costs, involved in my treatment. Beyond that we do have resources. We are certainly not wealthy, but we will, over time, be able to handle the cost of care. We are lucky. This whole process has awakened me to the plight of those without resources, without insurance, or with inadequate insurance. What are they to do? What about the very poor, whose access to any health care is limited by definition? Do we simply say to these people what Ebenezer Scrooge said of the poor in A Christmas Carol, “let them die and decrease the surplus population.” How is it possible that in the United States of America in the twenty-first century people literally die for lack of health care? This happens because in this country we see health care incorrectly. Our system views health care as a commodity, just another trade good to be bought and sold. With this view, it is easy to see how those without resources are left out. If it becomes just a matter of all the care you can afford, people will be left out, people will sicken. People will die, unnecessarily. This view of health care is sin, plain and simple. It is sin that people who need help cannot get it. Too many barriers are erected by the health care system, barriers that either push people away or seemed designed to intimidate them. Stacks of forms in language that makes sense to no one, probably not even the author of the form, how can one not be intimidated. No one, facing what is undoubtedly the worst time of their life, should have to deal with this. My sisters and brothers, this is sin. It’s not like sin, it is sin. The only way to end this sin is to change how we understand health care. Health care is not a commodity, it is a right. No one, in this day and age, should ever be unable to obtain needed care. As a nation we spend trillions of dollars on all manner of projects, yet caring for the health of our people languishes near the bottom. Propose a way to pay for all, and be prepared to be accused of destroying the system. Perhaps the system needs to be destroyed, it certainly must change. We cannot permit this sin to continue. Health care is a RIGHT. Thus ends the philippic.
Deacon John
Jan. 20, 2008

Chemo, Dentistry, and Providence

I had my second round of chemo Wednesday, and amazingly it didn’t take long at all. I was finished in just two and a half hours. It could be because they were planning on adding as new drug to my regimen, but weren’t able to add it until next time. The drug they want to add is Aredia, a drug meant to strengthen bones. Multiple Myeloma can weaken bones, so this is a preventative measure. They couldn’t add it yet, though, because there is a nasty potential side affect, Osteonecrosis of the Jaw, or ONJ. This is where dentistry comes in. It is important that you be in good oral health to offset this side affect, and that you have had no teeth extracted in the last 90 days. This is where Providence enters the picture. Back in October I had a tooth that was breaking apart and starting to hurt. Being both stubborn and cheap I ignored it, figuring that sooner or later it would stop on its own. One day, however, I thought to myself, why suffer, you’re not poor, you can afford to go to the dentist. So I broke down and saw the dentist for the first time in more years than I care to reveal. The dentist fixed my teeth, extracted two broken ones, the last extraction having occurred less than 90 days ago. All of this took place before I knew that Poindexter was there, or at least before I knew what Poindexter was. Had I not gone to the dentist, how long would treatment have to have been delayed? What consequence could that have had? I honestly believe the hand of God was involved in that initial visit to the dentist. I don’t have any other explanation for my sudden change of heart. Believe me, on my own I don’t think I would have ever gone to the dentist. Was God watching out for me, helping to get ready for what was coming? Perhaps.

St Peregrine, Pray for Us
Deacon John
Jan., 18, 2008

Some Answers, More Questions

On this past Tuesday we saw the Oncologist and finally got some answers. Unfortunately, they weren't necessarily the ones we wanted, but what can you do? I was informed that I have Stage 3 Multiple Myeloma. The treatment options at this point boil down to one, a bone marrow transplant, to be done somewhere other than here in Louisville. As the Doctor explained, he wants us to go where the "next chapter of the book is being written." He said that while he is involved in research, this isn't the research being done here. So sometime in the next few months I guess we'll be hitting the road in search of the best treatment available. We are also, unfortunately, dependent on insurance. I did speak to my nurse case manager at the insurance company, and she was quite encouraging, making the options seem more open than I thought they were. It looks at the moment like we'll be heading for Chicago, but that could change. No, it wasn't the news we wanted, but short of a sudden miraculous cure, no news would be good enough. Throughout this trial, I have many things to hold on to, my wife, my family my wonderful friends, but mostly I have faith. This is new territory for all of us as we step into the darkness, not sure of what will happen. No matter what happens, faith is the thing we must not lose. I know that God is with us, leading us through this new place.

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

Peace
Deacon John
Jan. 12, 2008

For my Fellow Fighters

http://www.thesurvivormovie.com/

To Sleep, To Sleep, Perchance to Dream...

I’ve never been a person who required a lot of sleep, maybe 4-6 hours a night. I’ve also never been a person who had much trouble sleeping. No matter what was going on around me, I could usually sleep. Until now. Now sleep has become a precious commodity, one that seems to elude me at every turn. Part of it is the drugs, from what I’ve been told, but I’m sure part of it is simply plain old anxiety. What is going to happen next? That question haunts me at times. I’m going to see the Oncologist today and hopefully I’ll have more answers than questions when I leave, but I’m not counting on it. Facing an unknown future is frightening. On those nights when I wake up after sleeping an hour or maybe two, I find myself staring into the darkness praying for a glimpse of what is to come. Praying, at this point, seems to be about all I can do. I can put on the brave front, be strong and all of that, but those nights, staring into the darkness, well, I’m scared. But, I am still praying. I may be facing an unknown future, but I am certain that I am not facing it alone. I have been blessed with a loving, supportive, family and with wonderful, loving friends who are beside me every step of this journey. I also have faith. I don’t know why I have been asked to take on this challenge, but I believe with all my heart and soul that God is with me. Some of those nights, staring into the darkness, I can’t see God, I can’t grasp the enormity of what is happening. At times I may feel abandoned, but at the end of the day I know, I believe, that I am not, that God is sharing this journey with me. I pray that in this process I grow closer to God, and hopefully others may see God at work here as well. If that is the case, then no matter what happens, this journey is worth it.
St. Peregrine, pray for us.
Deacon John
January 8, 2008