Friday, May 15, 2020

Healing Tears

Out in the bush high over the trees
 Screeches ring out of black-feathered banshees
"C'mon you blokes, it's time to move on,
We've eaten our fill and there's work to be done
And more she-oaks to rip into beyond yonder peaks
Loaded with nuts to crack with our beaks."

An urchin arises out of the dust
Runs into the hut as all urchins must,
"Mum rain termorrer, rain termorrer,"
Breathless and filthy, he's not wearing shoes
"I just saw a big flock of black cockatoos!"
 She looks up from the lifeless mound in the bed,
"Who's been putting that guff in your head?"
She's been let down by hope too often before
To believe the old folks' silly folklore.

The cockatoos nestled in their roost for the night
As the feverish infant lost a brave fight
The mother she cried and tore clothing asunder
Her grief smothering rumbles of distant thunder
The dawn would bring with it inches of rain
Saving the crops and soothing the pain
(C) Stephen Lacey, 15 May 2020

Thursday, May 07, 2020

Peewee Pee Who

Pee-wee's are such cheeky chaps
With no respect for nanna naps
They'll shriek all day at a piercing pitch
Like alarm clocks with no off switch
Best not work nights if you have peewees

Plovers in Cognito

So alike in appearance is the plover,
That one cannot be distinguished from anover,
Not even by a bruvver or the muvver.
When everyone looks so much the same, it must be hard to choose a lover.
Spare a thought for the inherently incognito plover.

Masked Lapwing 020

Friday, October 25, 2019

Lymphoma Update, October 2019

Soon after we came back from Australia, we confirmed that there was lymphoma activity in my spinal fluid again. I pretty much already knew because of worsening pins and needles and weakening in my left hand. A PET/CT scan also found four or five small tumors, all in muscle tissue. I was admitted to hospital on the 5th September, just 10 days after our return from Australia, and in hospital I remain.

At first my doctor just treated the spinal fluid activity with a couple of intrathecal applications of chemotherapy. He wanted to hold off on systemic chemo until any more urgent symptoms arose. A bloodshot patch in my right eye kept getting worse until there was almost all red and no white. Then the double vision started. A CT scan discovered a tumor in muscle tissue behind the eye. At the same time my blood counts plummeted. Treatment could be put off no longer.

Early October, just days after our 30th wedding anniversary on October first, I started a course of high dose cytarabine and etoposide, preceded by a dose of rituximab. My doctor had inserted a central venous catheter (CVC) with three lines to facilitate all the IV administration. The chemo was delivered over five days. During those days and the two following weeks I experienced a lot of nausea and associated unpleasantness, and my blood counts were all bottomed out. The CVC seemed to be red and angry more than it should be, and I was having a constant fever, so my doctor put me on three doses of two types of IV antibiotics a day. For 3 weeks I had almost no white blood cells and low enough hemoglobin and platelet counts that I was on transfusions of whole blood and platelets every other day.

About 10 days ago they removed the CVC (testing confirmed a staph infection), but I still had a lot of IV demands, which meant I had to have canulas in my arms. I dreaded this because my veins have become so hard to find and access. However, great work by some experienced nurses got me off to a good start. But the antibiotics are harsh, and the canulas would only last a day before the vein got red and angry. Lots more canula attempts, many fails. I watch them insert the needle, probing for a vein. When they do hit one, blood fills the little plastic section to which the needle is mounted, there is relatively little pain and I am relieved. When they can't find their target, the plastic section stays dry as they probe and seek the elusive vein and sink the needle deep into unproductive muscle. It hurts. Some nurses are too impatient, and bam, bam, bam; three painful misses in a row. The better ones are relaxed and careful and concentrate hard on finding a likely target.

Finally, by about the 20th October, my temperature came under control. Then a hint of bone marrow recovery as my white bloods and hemoglobin twitched upward. With a normal temperature and increasing blood counts, and decreasing mouth soreness (ulcers and sensitive gums), I was finally starting to feel human again. I could enjoy my food and had energy to talk and found I could even smile and joke around with the nurses once more. I really had been in a funk. None too soon the antibiotics stopped, and no more transfusions did I need. The final canula, which took a young resident doctor over one sweaty hour to insert on Wednesday night, was removed today.

Side effects aside, I have responded well to the chemo; the lump in my arm has gone and my right eye has recovered. Some pains from the tumors (in my chest and leg) have also gone. Next week I'll have another bone marrow biopsy and lumbar puncture to see how things stand, then another round of chemo (sigh).

Ultimately it is difficult to see a clear path to a stable remission, let alone cure, considering how short this past remission was. The only hope I see is CAR-T therapy. Although Kymria, one of the two commercially available CAR-T treatments, is now technically available in Japan, very few centers have got their licence to provide it. Several Tokyo centers are supposed to be coming on line in the new year. But there will be very few openings and I believe they will preference young leukemia patients ahead of old DLBCL farts like me. Still, that's the only hope I have, because I can't keep having this bone marrow crushing chemo indefinitely, and we will have to push and fight as hard as we can to get access to the CAR-T.
Hair today
Gone tomorrow

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.

Saturday, May 01, 2010

TELL 10 km 2010

Despite saying and feeling with some conviction that I was not going to run hard today, in the end I did run pretty hard. Took off and was just going comfortably along and found the 2nd km was around 4:00 pace. That ended up being the fastest I would run, and most of the race I was going at about my former marathon race pace. It was hard. It was my present 10k race pace. And I ended up with a 42:32. This would be pretty close to a PW for the distance for me. Some guy had been sitting on my tail up the hill and coming towards the finish, and with about 100 m to go he passed me. I kicked down and was about to try and sprint to the line, and it hurt, and I only lasted a few strides and then just said "Ah, fuck off, have it mate!" It wasn't worth it. Nothing to gain, nothing to prove.

But on the up side, my legs felt fine. Arnaud in his comment to my earlier post is right; I have needed the time off to let my body recover. Ewen is right too. I am stuck in quicksand and need to really give myself a shake if I am going to get out of it. Not running used to be unbearable, but of late it has become not just bearable but easy. Too easy. Danger, danger, Will Robinson.

I must go for a run tomorrow.

The Running Doldrums

I have a very serious case of the yips. The doldrums. Not running much and feeling less and less inclined to. A vague sense of, well, I should get back into it is all I can seem to muster.

Today I am off to run TELL, a 10-k charity race around the Imperial Palace. My sole motivation is that it will get me out of the house and into my running shoes. My third run in about 4 weeks. I don't know where it goes from here.

Tuesday, March 09, 2010

Tokyo Marathon 2010 - Photomagraphs

Here's some bloody photos of me bloody mara-bloody-thon.
the search result photos - Tokyo Marathon 2010 - All Sports Community
Uploaded with plasq's Skitch!

the search result photos - Tokyo Marathon 2010 - All Sports Community
Uploaded with plasq's Skitch!

the search result photos - Tokyo Marathon 2010 - All Sports Community
Uploaded with plasq's Skitch!

Tuesday, March 02, 2010

Don't trust your Garmin around tall buildings!

This picture shows the first couple of km of what my Garmin captured in the Tokyo Marathon versus the actual course. The original explorable map can be viewed here on my RunningAHEAD log. Zooming to the start and turning on the satellite view will soon show just how many tall buildings there are around here-- it is Nishi-Shinjuku after all. From past experience running through this area I knew the GPS data would be dodgy. For that and other reasons I took all my laps manually. This was a good move as the splits were all over-estimated and the total distance something like 43.5 km. I manually adjusted the distances after uploading to my log. Just look at that shocker of a did get much better from about 4 km, but other bad spots can be seen on the map. Just thought that might interest some of the Garmin users out there.

Note: we are proud owners of a brand spanking new iMac. This screen grab was obtained and edited with Skitch, uploaded to the Skitch host and then dropped here. All very quick and painless. This was my test post.