Stop & Go Traffic

 As I wrote in my previous post, various elements seemed to be falling into place. I was anticipating a meeting at Cleveland Clinic that would set the transplant in motion and begin the process of insurance approval followed by various appointments, scans and interviews for me and for my donor. There is a long checklist of traffic signals - lights that need to turn green before I can proceed with the transplant.

The first was the appointment scheduled for 12/18. But then, on the afternoon of 12/11 I received a call saying that the 12/18 meeting needed to be rescheduled and the earliest possible time was 1/15! Surprised? Disappointed? Discouraged? I was all of those things. It seemed like it would be Spring before I made it into the hospital!

There was nothing that I could do about it. If the doctor cannot be there, then you cannot have the appointment. I reminded myself that God is ultimately in control and that his timing is perfect. If God wants me to start the transplant later - then he has a good reason for it. I need to defer to God's goodness and wisdom and rejoice that he is keeping me from going too soon or too late. God's will be done.

This Tuesday I called my Transplant Coordinator and left a message asking for some clarification and information about where I stood. Since I will need a small army of volunteers to help me, I need to have some idea when I will need their help. On Wednesday she called me back and said that she had reminded my specialist that he had said he wanted to move ahead with my transplant sooner, rather than later. Since we could not have our meeting on Friday, he would call me on Wednesday (between his other appointments) and we would have our initial transplant meeting that way.

Sure enough, Dr. Gerds called me that afternoon. He reviewed the fact that they had a good 10/10 matched donor for me and that he wanted to do a reduced intensity transplant. The reduced intensity chemo is designed to be easier on my organs and also promotes the Graft versus Leukemia response that will help make sure the myelofibrosis is really defeated. He also said that they will be trying to reduce my T cells so that the transplant (Graft) can get to my bone marrow space without being attacked by my own immune system. (What a delicate balancing act - all with the goal of achieving a safe chimera.)

So, when I thought that the "go ahead" meeting would be delayed by a month it was actually advanced by two days. My emotions soar back from overcast ground level into the sunshine above the clouds!

Now we have many more traffic signals to navigate. If all the lights are green for me and my donor, then I might enter the hospital as soon as the middle of February.

Will the insurance approve the transplant without throwing up roadblocks? Will the medical evaluations be clear for me and my donor? Stay tuned!! The journey has just begun!

Things Are Falling Into Place

This is a time of intense insecurity with a backdrop of tremendous insecurity. 

COVID-19

COVID-19 is part of that background and at this very moment in my county we are at the highest level of public health emergency. Yesterday the deacons and I decided to once again cancel our in person services and ministries. Now we are going back to ministry by YouTube, email and phone calls. But how long will this last? When will things get back to "normal?"

POLITICAL DIVIDE

The recent presidential election is another part of the background. The country is very evenly split. One side things everything will return to "normal" now that their candidate has (barely) won the election. The other side thinks that we are descending into the abyss of socialism that will be working to decrease their personal freedoms and redistribute their wealth. Some think we are on the verge of a second civil war. What will really happen?

Against that background I am moving inexorably toward my SCT.

UNCERTAINTY

It is impossible to say what will actually happen. There are so many variables - known and unknown. Will I live or die? Will I suffer serious organ damage or have chronic GVHD? How long will it take for me to regain my strength - and how much of my strength will I recover? Will I be well - or will I be unwell? How long will it be before I can once again have an immune system that allows me to be in groups of people?

But as the title suggests, things are falling into place. 

MY HEALTH

I am in decent physical condition. I have not had even one transfusion. I do not have any blasts in my peripheral blood. I feel well enough to work. My main complaint is daily fatigue and itching.

THE MATCHES

Cleveland Clinic sent me three profiles of 10/10 matches and I understand that these have all been contacted to give approval for their information to be sent to me. I was also informed that the transplant team has chosen one of those matches as the one they would like to use as my donor.

THE SUPPORT

The matter of support during my hospitalization and subsequent convalescence looks encouraging. My wife can be my 24/7 care provider for the first 100 days as long as I can also have supporters who will commit to driving me to Cleveland for appointments and/or emergencies. We will also need help with cooking and cleaning during that three months.

THE CHURCH

Meanwhile, my church is willing to give me a year of leave to try to recover and return to ministry. Hopefully that will work out and we will also be able to provide a substitute pastor who will take care of the church throughout my absence. Those arrangements are still being made, but things look very promising.

GOD'S SOVEREIGNTY

Many years ago I surrendered myself to God for his glory. At the time I did not realize where exactly that would lead - but my commitment was to go anywhere and to endure anything to serve him. That is my prayer about this SCT.

I would rather work as a pastor without going through the near death experience of an SCT. But if this is what God has for me - then I know he will bring good out of it one way or another.

God's sovereignty is not "falling into place." (Smile) But my coming to a place of greater peace because of God's sovereignty is part of my sense that everything is falling into place.

Onward! Forward! Let's get this done!

Progression Catches Up With Me

 I'm glad to say that I had a rather uneventful year on Inrebic, in spite of the COVID-19 pandemic that started in the Spring of 2020. Life got incredibly busy with the pandemic and with some physical problems my wife began having just before the pandemic broke. The long and the short of it was that from March of 2019 the demands on my time became intense. On the one hand my wife needed quite a bit of support and on the other, my pastoral ministry demanded more time in unexpected ways.

You might have thought that a pastor would have time to burn during a pandemic when the church was closed down for three or four months. You would be wrong. First there was the learning curve in figuring out how to continue weekly Bible lessons for the church and then learning to make it work. I settled on making YouTube Videos and ultimately found that in addition to my normal sermon preparations, YouTube took me an extra day each week. I have a new appreciation of the many YouTube personalities that make it look so good. My efforts are pretty rough - but they accomplish their purpose.

Dealing with my wife's health issues and my own issues was also a source of stress. Everyone in the medical profession seemed more concerned about COVID than about any other physical issue. The virtual doctor visits cost the patients just as much as an actual visit - but in my opinion they are almost worthless. You get to tell the doctor how you feel - but they cannot take your vitals or listen to your heart and breathing or anything else. They are just guessing about how you are based on what you have told them. I ended up canceling a couple of virtual appointments that I had and I very much felt like my doctors did not much care one way or the other - if they knew at all.

I also went for several months without getting a blood draw because of the pandemic. I knew that the lab would be backed up and that there would be an increased risk for catching COVID at the lab. So I waited until June to get back into monthly blood draws. At that point I found that my platelets were continuing a downward trend. I wasn't happy about it, but I figured (or hoped) that it was because of the Inrebic. By August my platelets were down to the low 80's. I had a virtual appointment scheduled with Dr. Gerds for September, so I started getting ready by checking on my previous appointments where I read his notes. Realized that he was saying I was not interested in a transplant.

When I was intermediate-1 risk I was not interested in a transplant. An SCT is no bargain and I have had a dozen friends die during or after transplants due to the complications. It is not something that you just do for the heck of it. I had hoped that my myelofibrosis would progress slowly enough that I could make it to 75 years of age without a transplant. I figured at that point I would not seek to have a transplant. But I have always said I would definitely try a transplant if I became high risk before I was 70.

So, when I had the appointment with Dr. G. I pressed him about the platelets and he said it was because of my disease - not because of the Inrebic. (RATS). Then I asked him to tell me where I stood and he walked me through the MIPSS70 assessment to show me that I was at High Risk with only a 34% chance of living five years. (I suspect that I am very close to the cut-off between intermediate-2 and High Risk - but I'm close enough that it doesn't really matter.)

To make a long story shorter - Lola and I decided to move ahead with getting me a transplant while the getting was good. It is upsetting in many ways and daunting. But it seems like the only reasonable thing to do, given the progression of the myelofibrosis and my poor prognosis.

Now I just wish we could get it over with.