It began two weeks ago when I came home from work on a Tuesday afternoon and found that a fever had returned. The week previous I had been on antibiotics to deal with an ear infection. The infection responded well and the fever disappeared. Now it was back. On Wednesday my hematologist prescribed a new antibiotic to deal with the symptoms of fever, cough and shortness of breath. If the fever did not respond within two days I was to go to the local emergency for blood tests and a chest x-ray. By Friday things had not improved so I headed to the emergency department at Peace Arch Hospital and went through the tests. The chest x-ray revealed diffuse interstitial inflammation and I was diagnosed with pneumonitis. I was prescribed a new antibiotic that should deal with the likely culprit. However, the fevers continued and there was no improvement over the weekend. On Sunday night I called the hematology department at St. Paul's Hospital in Vancouver. It is the home of my hematologist and his colleagues who are responsible for my care. The hematologist on call agreed that it would be good for me to come to the hospital first thing on Monday morning. Fifteen minutes later she called back and asked if I could come in right away. She had done some research and had discovered that a rare side effect of Revlimid can be pneumonitis. She thought that it would be good to get started on testing overnight. So we got in the car and drove the forty-five minutes to St. Paul's.
Arriving at St. Paul's I found a bed waiting and a medical team ready to seek the source of my trouble. The care that I received at Peace Arch and at St. Paul's was excellent from beginning to end. In order to diagnose the source of my troubles it would be necessary to determine if I had any sort of infection. The only way to be sure that this was a side effect of Revlimid was to cross off all possibility of infection. In the meantime I was put on a variety of intravenous antibiotics in case an infection was the cause. A CT scan showed that the pneumonitis in my lungs was significant. The respirologists were surprised that I did not require oxygen. Fortunately, training for those half-marathons and marathon has left me with a healthy set of lungs. On Tuesday I had a bronchoscopy. A variety of samples were sent for testing to determine if an infection was present. At the same time cell samples revealed a large number of eosinophils in my blood. These white blood cells usually indicate an immune reaction to parasites. However, they are also commonly seen in an allergic reaction to medication. This led the respirology team to think that my pnemonitis was, indeed, a side effect of chemotherapy and not the result of an infection. However, it would take another three days to get all of the test results back. So it was not until Friday, when the results all came back negative, that I was taken off of intravenous antibiotics.
The good news is that the treatment is simply to stop taking Revlimid. My last dose was on March 25. It is expected that I should have a complete recovery, with my lungs returning to normal. By Saturday morning I had gone more than twenty-four hours without a fever and so was released from hospital to continue recovery at home. I am still a bit short of breath and am quite tired, sleeping frequently during the day. My energy is slowly returning. My cough is nearly gone. I feel quite well otherwise, with a good appetite and no other aches or pains. The bad news is that I will not be able to continue taking Revlimid. The results of my first month taking this breakthrough drug were quite remarkable. My free light chain count (indicator of the activity of the multilple myeloma and amyloidosis) dropped from 704 to 173. This was very promising. Alas, I will not be able to continue this therapy.
So, to recap, the initial therapy of a stem cell transplant was not effective while the second line therapy of Revlimid was very effective but resulted in an allergic reaction. It is, to say the least, frustrating. It feels like one step forward, two steps back. I spoke to my hematologist today. He proposes that my next line of treatment will be bortezomib (Velcade) which will entail a weekly subcutaneous injection at St. Paul's four weeks out of every five. That new treatment protocol begins May 10. In the meantime, I will continue this month with a half-dose of the steroid dexamethasone to keep things in a holding pattern. Hopefully the half-dose of dex will not be quite as intense a roller-coaster ride as the full dose has been.
That is the medical report. The other side of the story was as difficult. When the fevers first hit I kept hoping that the antibiotics would kick in quickly and that I would be able to be present for Palm/Passion Sunday. Our choir - The Singers - prepared a cantata for that occasion and I was to be one of the readers. As the day came closer I realized that I would not likely be able to attend and so called in my good friend Doug as my backup. Thinking that this was an infection I continued to hope that, with the right antibiotic, I would be able to make it back in time for the Triduum. When meeting with the hematologist at St. Paul's on Palm Sunday evening I mentioned that I had five worship services to lead on four days beginning on Maundy Thursday. The doctor gently replied that I was too ill and would not be able to participate in Holy Week this year. For the first time in thirty two years of ministry I would not be with my congregation in Holy Week. It was difficult news to hear and to take in.
I was grateful for the phone by my bed. It was my lifeline during the week. It meant that I could stay in close touch with my family. And it meant that on Monday I was able to contact key leaders in the congregation with the news that I would not be able to be on hand at all during the week and could not provide leadership on Maundy Thursday, Good Friday, Holy Saturday or Easter Sunday. A few conversations and twenty-four hours later all was in hand. Each of the five services had leaders in place. The gift of years of practice meant that, as Margaret told me, "Don't worry, we are well trained, we know what to do". I was reminded of Jewish families who know how to celebrate Passover because they have been passing along the tradition for generations. The congregation is well practiced in the rite of foot-washing and the Tenebrae service of darkening on Maundy Thursday. It knows well the rhythms of Good Friday and the liturgy of the Easter Vigil on Holy Saturday, not to mention the great celebration of the Eucharist on the first Sunday of Easter. I was missed, but not because I was the one who knew what to do.
I did wonder all week why this had happened in Holy Week. It seemed too coincidental not to have been providential. After all, I was in St. Paul's Hospital. There was a crucifix hanging over the door of my room, as there is in every room of this once Catholic hospital. St. Paul is the apostle of the gospel of Good Friday, Holy Saturday and Easter Sunday. He is the one who says that the gospel of the cross is our baptism into Jesus' death so that we might also participate in his resurrection (Romans 6:3-5). After so many years of preaching my way through Holy Week with a message of Friday, Saturday, Sunday here I was living it. And here was a congregation anxious about its pastor, yet able to tell and live in the gospel that carries us through trouble, including this trouble. I was not surprised to hear that Holy Week at University Hill was a rich combination of beauty and pain, love and ache with a congregation bearing one another's burdens and giving thanks to the God who, in Jesus Christ, bears the burdens of a suffering world.
If all goes well this week I am hoping and planning to be back with the congregation this coming Sunday, celebrating the fifty day season of Easter and its promise of resurrection on the other side of trouble and ache, grief and death.