WM: An Explanation of my Facebook post of 24 August 2015

My Facebook post is a photo of me hopping on a suburban Tokyo bus and saying it is a great day to be going HOME. To those not yet in the loop, it wouldn't have been clear where I was returning from, but it was obvious that I was pretty happy about it. Unfortunately it was neither a return from a business trip nor a holiday, but release from a 4-week stay in hospital, for I have developed a slow-moving non-Hodgkin's lymphoma called Waldenstrom macroglobulinemia (WM for short: a rare type of blood cancer, which means it is a bit like winning the lottery...only different). It was diagnosed in early July immediately after I returned from my trip to Australia. It is incurable but it is treatable using a combination of a steroid, monoclonal antibodies, and chemotherapy. I can expect to achieve remission and return to a fairly normal life for some years at least, but it is actually impossible to predict how complete or long-lasting the remission will be. Resistance to treatment or conversion to a more aggressive lymphoma are an ever-present possibility, or I might well live to a ripe old age without further recurrence. Nothing is certain, but the odds are not too bad in my favor. (Here is another link to an explanation about WM for those who want to know more.)

Doing what you have to do

During this stay in hospital I had my first two rounds of chemotherapy. At first my blood cell counts were dangerously low and I had to receive quite a few transfusions, mainly of platelets. Platelets have a critical role in stopping bleeding; had I had a stroke during this time I would have been dead, and even now my platelet levels are still well below normal and I should avoid sharp knives and automobile accidents.

About 10 days after the first chemo, my blood counts started improving, and by last Friday they were at pretty comfortable levels with respect to not needing more transfusions, at least for now. The doctors were happy to release me today to continue my next four rounds of chemo as an outpatient. I spent about 4 days feeling pretty sick from the chemo each time, and I suppose there is more of that ahead, but at least I will be at home.

Card from running friends

Visit from my boys 

I have received the most fantastic levels of support from family, friends, and my company; my wife has been an absolute rock, and my three sons a constant source of strength. My Tokyo-based friends almost killed me with kindness at times, but I have generally received support and space as needed. I can't adequately express my appreciation for all the messages, spirit-lifting visits, and generous gifts.

It was great to get home and find my chili and basil plants doing well

By using Facebook for this announcement, this post will be read by many people who don't really know me that well, and by others who will probably feel hurt that I didn't tell them sooner. But it has been a dilemma all along as to who and how I should communicate my situation. Facebook seems to be a heavy hammer to wield, yet it is already hard to stay on top of the separate communications I've started, and I guess it is not fair to continue to stay publicly schtum, especially now that my recovery seems to be on the right track. All I can do is ask for understanding that there seems no right way, but this is the way I've chosen.

I want to keep this as short as possible, but a final thought to leave you with. Despite my joy at finally getting away from the four walls, snoring wardmates, and hospital food, I am left with thoughts of those I had to leave behind in the hematology ward. Many people there have it far worse than me, receiving much more aggressive treatments and being stuck inside for many months longer and with less optimistic prognoses. My heart almost broke on a daily basis watching what people had to endure -- the never-ending drips, the gut-churning treatments, hair-loss, nausea, ulcers and infections, lack of privacy, unstomachable food, and when feeling better, the constant battle with boredom and monotony. The nursing staff are hard-working and absolutely brilliant, but there is only so much they can do to ease the unpleasantness. So I want to end this message by reminding all who are eligible, to please consider donating blood when you can, or even learning about and registering as a bone marrow donor. As I have discovered, blood diseases can strike anyone at any time. Donors literally save people's lives. People just like me. And people just like you.

Thank you for reading my story.