On Tuesday I had an appointment with my hematologist. He has been following the results of my blood work - in particular of the free light chains (serum proteins) in my blood in the aftermath of the stem cell transplant (these are the key indicator of the state of the multiple myeloma and amyloidosis in my body). To his surprise the numbers did not drop to the level that he expected as a result of the stem cell transplant, nor have they remained stable. Instead, they are once again on the increase. This is an unexpected result, given that he had hoped that I would benefit from a lengthy period of remission (perhaps a number of years) before requiring further treatment. However, as all the information about multiple myeloma indicates, every case of this disease is unique unto itself. We are now discovering some of the peculiarities of my version of multiple myeloma and amyloidosis. That's the disappointing news.

The good news is that there are now other treatments available to me (which were not available as recently as a few years ago). As a result, I am to begin a second line of treatment on March 5. Last week my doctor applied to the BC Cancer agency for approval for me to receive Revlimid (also known as Lenalidomide - a relative of Thalidomide) and this request has been granted. Revlimid is an oral chemotherapy drug that is taken once a day for twenty-one days each month. This means that I do not need to go to the hospital to receive treatments. I will remain on Revlimid so long as it is working and does not have negative side effects that would outweigh the benefits of the drug (some of the possible side effects are thrombosis, decreased platelets and white blood cells, skin rash, etc). This treatment may well last for a number of years until the myeloma returns. Revlimid is given in combination with Dexamethasone (the same steroid that I was on for three months last June through August). For the first four months the dose of Dexamethasone is the same as I was receiving last year. After the first four months the dose is reduced from twelve days per month to four days per month which sounds much more manageable to me. I am definitely not looking forward to four months back on those high doses of steroids and, I suspect, neither are my family, friends or congregation. I will be having blood work done every two weeks for the time being so that the doctor can keep a close eye on the effects of the treatment.

I am, of course, disappointed by this turn of events and am sorry to have to pass the news along. I wish that we could enjoy the benefits of some years of remission without needing to resort to chemotherapy. Alas, that is not to be the case. To be honest, I felt like punching the wall when I heard the news. Fortunately I thought better of that plan and so my arm is not currently in a cast. At the same time I am finding myself able, mostly, to accept this new reality and ride with it. This cancer feels like a strong river current. It is too powerful for me to try to swim upstream. Instead, it seems best to ride with the current as the doctors try to slow it down as much as is possible. Because my only symptoms are bio-chemical ones detected by blood tests it still seems odd to think that I actually have incurable cancer and amyloidosis. Nonetheless, I get it. Yes, I am inevitably going to have to deal with clinical symptoms down the road. In the meantime, I am grateful for the gift of this time even as I steel myself for four months of high doses of Dexamethasone.


  1. I keep you in my prayers, Ed.

  2. Barbara, it is so good to hear from you. Thank you for your prayers and concern. Ed

  3. Blessing to you and your family Ed as you learn to float in this river. My prayers and thoughts continue to journey with you.

  4. Ed...love the story, love the update, hate the cancer, love you. All this gets pretty stark eh? Pretty black and white.

    Even though you know you are being witnessed and held I figured it was worth leaving a little comment though, saying a little prayer.

    I was in a gathering with a bunch of Episcopalian priests this weekend in Atlanta. And I had your sermon last week firmly in mind yesterday as I took a little free time and walked down Auburn Street to Ebenezer Baptist Church and sat on the curb across the street and just bathed in the presence of that building. And although I could conjour up images of Dr. King and his mother, and meditate on the endless struggle for justice, it was actually you that I thought of for that whole half hour.

  5. Dear Pastor Ed, I too am fighting MM, and simultaneously working on my relationship with God through Jesus Christ. I'm greatful for finding your site and look forward to any wisdom I can glean from it. As for the Rev/Dex treatments, I pray that your experience is a typical one in which the Rev is well tolerated and the dex does not mess with your system too much. I convinced my oncologist to drop the dex part of the treatment because of the negative side effects and successfully continued the Rev for a year longer. Keep in mind that treatment of this disease may be as flexible as the disease itself, so if something isn't working, be open to try other things. My 18 months of Rev worked quite well and I pray the same for you. Nick Calderon, San Ramon, California.

  6. Sally, Chris & Nick -
    Thanks so much for leaving a note. Each one is a great encouragement. Sally, I hope that your own journey is bringing you daily gifts of mercy. Glad for coffee when you have time. Chris, thanks for taking me back to Ebenezer Baptist with you. It reminded me of my first visit there and somehow bumping into Coretta Scott King who gave me a warm welcome to Atlanta. I am looking forward to our work together this year and to the opportunities for friendship it will provide. Nick, your witness from down stream in the multiple myeloma river is a big boost to me today. Thanks for the wisdom to stay flexible and open to a variety of treatments. I am learning as I go. I hope that in some way my sharing here will be an encouragement to you. Keep the faith!