five years since diagnosis

This month marks five years since I received the word that I am living with multiple myeloma and amyloidosis. That was eighty-five myeloma related blog posts ago. The second of those posts was the sermon I preached on my first Sunday in the pulpit after my diagnosis - "What's Up" (a sermon for Ascension Sunday that named the new reality of my illness). You can follow the story of the last five years by clicking here - Myeloma posts.

Here's the latest update ...

The good news is that the good news continues. Over the past few months my free light chain counts have been the lowest recorded since my diagnosis. They are currently holding steady at 35. It means that the treatment with pomalidomide, dexamethasone and cyclophosphamide is working very well (at the time of diagnosis the count was 1600). I have been taking pomalidomide in combination with dexamethasone for seventeen months (cyclophosphamide was added nine months ago and has really helped). On the down side, this also means continuing to cope with the steroidal side effects of dexamethasone which take me on a weekly roller coaster ride physically and emotionally. Another side effect of the steroids is the suppression of my immune system (which is already compromised by the disease). At Easter I suddenly developed a high fever. In order to be sure that this was not the sign of a blood infection or pneumonia my hematologist advised me to check in at the St Paul's hospital emergency department. I ended up having a three night stay in hospital where it was determined that I was fighting a virus, not a blood infection or pneumonia. The cough and fatigue lasted for three weeks. I am glad to be over it now and am hoping to stay away from as many 'bugs' and viruses as possible in the days ahead. All things considered, I am very fortunate to be receiving the drug therapy that is keeping my free light chain count low. If and when that count rises the primary concern of my doctors is the possibility of amyloidosis causing damage to one of my major organs before myeloma puts my life at risk. Fortunately, the treatment for amylodosis and myeloma is the same.

On July 17 there is to be a Myeloma Walk/Run for a Cure in Vancouver. Normally I would plan to be a participant and to invite donations in support of the walk. Unfortunately I will not be able to make it to the walk that day. The donations to the walk/run for a cure are going to the Hematology Clinical Trials program at the Vancouver General Hospital. This is the same program that our daughter Anneke's fundraiser supported a few years ago. At some future point in my treatment I may be able to participate in one of the clinical trials that are offered through VGH. While I will be unable to join in the walk this year I have made a donation to the VGH Hematology Clinical Trials program. If you would like to make a donation visit this page and then click on the "donate" button in the bottom left hand corner of the page. All of us who rely upon the new drugs being tested in clinical trials appreciate your generosity!

Thank-you to my many friends, colleagues, parishioners and acquaintances near and far who have offered love, support, prayers and understanding through these precious years. Here's to many more.


  1. Hi Ed
    It is good to hear your treatments are doing well and that you are over your flu.
    I thought of you as I set up the coffee outside yesterday.
    Donation in.
    May God continue to be at your side.

  2. In all that has been & all that shall be, may hope & peace meet joy & love in every today, my prayer.