Monday, August 24, 2015

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.


Ewen said...

Thanks Steve. When a blogger suddenly reappears after a long break I usually say "You're alive!", but perhaps I won't in this case. I hope your future recovery is as good as it seems it will be and that eventually you may get back to running (even if you'll be way slower than you used to be).
You remind me that I haven't given blood for more than a year. I'll fix that lapse.

Jayne Maddock said...

You're an amazingly strong & truly wonderful fella.
I'm so glad you're finally home again.
Take care & stay away from sharp objects :0)
Sending enormous amounts of love & hugs from me & my boys
Jaynie xXx

Robert Song said...


Sorry to hear of your cancer. I was diagnosed with Diffuse Large B-Cell Lymphoma about six years ago. It had spread to many places in my body but luckily hadn't got into my bone marrow before I started my treatment. Chemo can be rough but soon enough it will be over. Hoping things go as well for you as it did for me. My oncologist never uses the "C" word (cured) but refers it to being currently in remission.

Since finishing my treatment I have run six marathons with a best of 3:13(and about to do another this weekend). I don't say that to brag but rather to illustrate that with a good treatment outcome many things are possible for the cancer survivor. The survival rates for WM look pretty encouraging to me, so hang in there.

All the best.


Mary Eckstein said...

Dear Steve, thank you so much for this post. We have been thinking of you and wondering what's been up, so am so happy to hear that things are going in the right direction for you. Stay away from sharp things and don't get in any cars ok? We're sending a huge amount of love and hugs your way! Xx Mary and Peter

Scott Brown said...

Stephen this blog brings back memories. I'm thinking of you and your family. I know you to be a compassionate, intelligent and kind person. Since I've known you, you've treated me like a brother, seems like a lot of people care a lot about you. If you find people "killing you with kindness" there are many good reasons for this. I wish you a full and strong remission and believe you will come out of this with your humor and toughness and vigor intact.

Stay Gold!

Stephen Lacey said...

Thank you all for the kind and thoughtful comments. Ewen, honestly it's OK to say "You're alive!" Really, I am. And I aim to remain that way for a long time :-) As Graham points out, it is possible to get back to near normal from this type of lymphoma. I don't know if I will re-launch a serious running career, but I certainly want to be active, and some running will be a part of that. First I have to knock the cancer cells for six and then kick the cancer-induced anemia.

Graham I remember when you were diagnosed and being mightily impressed about your ability to bounce back from it. I really had no understanding of the clinical aspects of your condition, but a quick read of Wikipedia shows me that I certainly do now. There appear a lot of similarities in the treatments, the standard for yours being R-CHOP, whereas for mine the main options are R-CHOP or DRC. I am receiving DRC (dexamethasone, rituximab, cyclophosphamide). Hope my recovery is as emphatic as yours. To use a cricketing analogy, we have to make Mr C. regret dropping us on 50 odd and go on to make big centuries :-)

Jaynie, Mary, miss you two so much. Hospital visits from you would have been such a hoot. I wouldn't have let you sneak in some Baird Beer, but just the thought that you probably would have tried gives me a smile.

Scott, I have been compelled to treat you like a brother because we so obviously share the same genes, at least with respect to running and facial hair. Although you probably did better on the former and I on the latter ;-) ... there you go, humor safely in tact for now :-)

2P said...

Hi mate, thanks for sharing. Wishing you all the goodness that being born under a camphor laurel tree should bring. Cheers, Scott :)

Jayne Maddock said...

Miss you too Steve & the Bairds beer gang ☺️
Looking forward to a sneaky tipple with you when we finally manage to make it over. hugs xXx