B is the word.

February 9, 2012

C Word, Family, Food

Comments Off on The pancytopenia conundrum

I would offer to sell the above title to Robert Ludlum, but sadly he is deceased. Though it seems his name continues to publish, so maybe there is some hope.

I had another meeting with my oncologist today. The ongoing mystery (he used the word “enigma”) is why my blood system is not producing well across the three main types: white cells, red cells, and platelets; aka “marked pancytopenia.” There are obvious things (chemo, transplant) that could explain one, or two, but three?

The most likely problem would be in the bone marrow, which is where the blood comes from. So last week I had a bone marrow biopsy. The site where they stuck the needle still hurts. What did it show? “No abnormal B cell populations” which is good. “30% cellularity”, meaning how many cells are being produced I guess (or maybe it means 1.5 bars), which is low but not unusual. “The rule of thumb is that cellularity starts at 100 and goes down with each year of age” he said. So marrow-wise I’m 70, which is pretty much how I feel these days. So no explanation there of the uncanny pancytopenia.

One of the better things about having follicular lymphoma is that at least it is the most common of the non-Hodgkin lymphomas, hence well-studied and well-supplied with therapies (its feature of being incurable is a drawback, admittedly). Fortunately the results of my CT last week were that there is no growth of any lymph nodes or spleen, so for now the disease that brought me here is under control. But with this blood thing I’m into enigma-land, which is more intellectually stimulating but leads to a certain uneasiness.

The best guess at this point is some sort of auto-immune thang that is trashing blood cells. My LDH is 500, which is pretty high but not alarming (“we see them in the thousands” he said). The two candidate therapies are steroids, probably prednisone, and intravenous immunoglobulin (IVIG). We were about ready to go with one of these, when another doc (“best in the world on these things”) popped by and suggested one more blood test for a particularly obscure something-or-other … so we’ll wait until Monday and try again. Just as well: at this point the prospect of yet another different treatment seems almost worse than the disease.

So I’ll have a relaxing weekend, and you should too.

In other news Eve and I are celebrating our 20th wedding anniversary tomorrow (the actual day is today, as we were married on 2/9/92 for druidical palindromical purposes) at the Herb Farm in Woodinville, less than a mile from Eve’s home as a teenager.  Here’s the menu. Should be good. Looking forward to another 20 years.

 

January 19, 2012

C Word, Family, Food

Comments Off on Sitting in limbo

“I can’t say what life will show me, but I know what I’ve seen.”

My last treatment was Dec 19-20 (so very 2011), an early Xmas present. This was the usual Bendamustine+TRU-016 on Monday and B+Rituximab on Tuesday. It was, as I recall, uneventful, which is good. I was a little stressed because we were having our annual Winter Solstice open house event on Dec 22, and I didn’t want to be throwing up while the guests were in the house. But all was fine, we had a nice time with neighbors and colleagues. I made caramelized onion focaccia that was well-received (i.e., completely devoured).

I was due for my 14-day tune-up with TRU on Jan 2 (2012), but had to wait until Jan 3 because of New-Year’s-Day-Observed. I went in that morning as usual for the blood draw to make sure my numbers were OK for treatment. In previous rounds my platelet count had been marginal; this time it was sub-marginal (had to be 75K, was only 65K). So, no treatment that day. Could we wait? We could, as there was not much choice. My hematocrit was also on the low side again, and since I was headed for Phoenix in a couple of days we decided to go for another couple of units of red cells. Man, red cells, I love em, I could live on those things.

I went back for another try the following Monday Jan 9. Platelets OK? Platelets not OK. Could we wait more? We could. Is there something I can do to pump up my platelet count? Eat some raw meat, or some spirulina, or barleywine ale? Nope, nothing to do but think good platelet thoughts.

Back again to SCCA Friday Jan 13. Same story, in fact even lower (55K). Can we continue to wait? Will it be OK with the trial? How is this affecting my overall improvement? Should I get a platelet transfusion? Well, it’s Friday before a three-day weekend, so rather than worry about these things we’ll wait some more and try again next week, on Wednesday.

Maybe we should have tried on Tuesday. Wednesday Jan 18 turned out to be an interesting day in Seattle weather-wise. They were predicting up to 10 inches of snow, but the worst of it went south a bit, so Seattle only got 4-6. Still, this is a lot for us, so things were pretty much shut down, including SCCA. Could we wait just a bit more, now going on more than two weeks beyond when I was supposed to get my Day 15 touch-up? Yes we can.

As I write, I’m scheduled to go in again tomorrow, Friday Jan 20. I’m not holding my breath, especially since there’s still a lot of snow outside. Supposedly the question has been asked of the clinical trial powers-that-be about whether I can get a platelet transfusion within the parameters of the trial, so I should have an answer on that. I’m hoping to get some stuff put in one way or another. The sitting in lymbo is getting kind of old.

Lest anyone in my readership think that all I’ve been doing is waiting, au contraire.  Here is just a small sample.

For Christmas Eve with the extended family I always bring the bread, of course. This year I made these couronnes bordelaise:

following the fine method described at breadtopia.com. Impressive, and apparently tasty as they disappeared quickly.

Annika was home from college, and it was good to see her (on those rare occasions when she wasn’t with her boyfriend). She seems to be doing really well at Northeastern. But of course she mostly wanted to befriend the puppy:

Like Norman Rockwell

which is fine, he can always use another friend.

With a careful eye you can see above that this was something of a henna-oriented holiday. The girls did the henna tattoo thing (even boyfriend Joe had to submit).  The day before she left Annika wanted to henna her hair, adding some red highlights to her natural lustrous brown.  I said: hey, I’ll try some of that, save some for me.  She said: Dad, I don’t think so, your hair is white, it will just turn orange. I said: cmon, I have some hair now, I may as well have some fun with it. Indeed, she was right: even with a watered-down dose and a short application time (maybe 15 minutes) the effect was pretty dramatic. I call it “Donald Trump bronze”:

Only my hairdresser knows for sure

For comparison here is a widely-circulated pic shot in the same location under similar conditions eight years ago:

Where is Mitchell's anyway?

Hmm, I guess they changed the sign since then. Also I got a new raincoat.

Lastly, if you have snow, and a puppy, and a teenager (Julia) you gotta have some fun:

Mush

Here’s some puppy sledding video even.

Sledding here in limbo … but I know it won’t be long.

 

World Cup, the Last Hurrah

Has it only been a week since the World Cup finally ended, and we all have had to start speaking español (or is it espanyol?).  It seems like ancient history now.  Amazingly there’s already another World Cup underway, albeit one with rather less fanfare, but in this one the USA is actually the favorite.  Go, Sydney.

The post-tournament rankings of world senior men’s teams are out.  Hmm, mostly corresponds to the tournament outcomes, Spain on top, Uruguay zooming up, USA up a little, but what’s this?  England gained 57 points, and moved up a notch?  This would be the England team that got knocked out 4-1 in the round of 16, whose performance was uniformly described by its national media as “humiliating”?  Did these rankers watch the same tournament as everyone else?  Did they credit Lampard for that goal, and figure that changed everything?  Is this surreptitious support for the England 2018 bid to host the Finals?  Feh.

A Busy Day

The day of the Final (Sunday July 11, Day 46) was a busy one for me.  I started the day by making bagels, boiling and baking dough circles that I had prepared and refrigerated the night before.  Unlike every other food blogger, I am unashamed to say that these didn’t turn out as well as I’d hoped, or as they had in previous attempts.  It seems I put in too much yeast, so they over-rose a bit in the pan, then really puffed up during the boil, only to flatten when baked.  They still tasted fine, but the always-dangerous act of bagel slicing becomes even more fraught with peril when trying to slice a half-inch-thick ring.  And they weren’t dense enough:  a bagel is one case where you don’t want good hole structure.

After the game, energized by a contest between two nations known perhaps as much for their cyclists as their footballers, I went for a short ride on my real bike, the first since some time in April.  I only went four miles or so round-trip (to the Metropolitan Market and back, via the Burke-Gilman Trail), but it felt great.  My legs and lungs were certainly weaker than they used to be, but I was able to chug up the hill back to our house just fine.  Oddly my seat felt too high; maybe my legs have shrunk due to all the lying around?

After that I even had the energy to take the dog for a walk in Ravenna Park.  All in all a good day, though I was completely exhausted by the end.

A Torpid Week

Perhaps that was all a little too much, as exhaustion has been the theme for the week since then.  By Monday I was feeling achy and a little chilled.  Tuesday I spent most of the day on the couch, and Wednesday was worse.  We went to the clinic, where they did blood cultures and prescribed some antibiotics.  Since then things have been up and down, but mostly down.  Yesterday, Saturday, I barely got off the couch, and didn’t leave the house.

Today I didn’t get out of bed until noon (and that was just for the Sounders game on TV).  Taking the dog for a walk would be torture.  The idea of getting on my bike seems like it’s from an alternate reality.  Even in the searing heat of the Seattle summer (high today 69 degrees F) I am freezing, wearing my sweater as I type here on the couch.  Eve made a call to the clinic today, where the advice was just to hang in there, since “it’s more normal to feel lousy than to feel good during recovery”.  I spose it is.

Despite all that I was able to do a bit of work from home, including sending one satisfying blistering email rant.  For those of us who live to rant, this is where we get our energy.

In Praise of Quality Consumer Goods

I have mentioned our couch quite a bit.  Here it is.  (This Very Laptop On Which I Type is on the side.)

For a long time I have been very fond of this couch, and my recent experience has only deepened this affection.  When we moved from San Francisco 11 years ago we sold a lot of our furniture, and since our Seattle house is twice the size of our SF one we had a lot of room to fill up.  We bought the odd chair and bookshelf, and I was able to indulge my taste for Stickley, which is popular among the Seattle bungalow crowd (though our house is not one of those, unfortunately).  Stickley isn’t known for couches, but this one was very impressive, mostly for the quality of its cushions, which have a remarkable balance between firmness and cushiness, and a general feeling of solidity.  It was rather too expensive for us, but we decided what the hell, a good couch is a good thing.  It has proven to be a fine piece of furniture, remaining as comfortable and supportive today as it was 11 years ago, after many many hours of bearing the weight of family and friends, mostly mine.  We bought a lot of other things at that time:  rugs and appliances, beds and cabinets.  The couch, to me, has been the most consistently satisfying of them all.

So if any of you gentle readers out there, especially you younger ones, are considering a couch purchase, let me encourage investing in a good one.  I’m sure there are many fine manufacturers.

Hickman

On Thursday I was scheduled to have my Hickman catheter removed.  Despite my being sick we went ahead with it, since the clinic folks figure that the line is the most likely source of infection, so better to pull it out.  So out it came, after having been a part of me for 73 days.  (Attentive readers will recall that this was my third central line.)  The surgeon, Dr. Petty, who had installed it, yanked it out and held it up for me to view, “kind of like a prize trout”.  I decided not to take it home.  A couple of days later I celebrated by taking a long hot bath, one of the main things one can’t do with a Hickman in place.

Report from the Far East

On Saturday morning Eve and I were awakened at 0630 by the phone.  Who could be calling?  It was our daughter Annika, calling from Luang Prabang, Laos.  I had sent her an email saying I was feeling sick and she called to make sure I wasn’t back in the hospital.  Um, Laos?  Yes, she’s in Laos on a trip with Rustic Pathways, which does adventure/service/educational trips for teens to all kinds of remarkable places.  The trip Annika is on is photo-oriented, meaning the centerpiece is going to a village and taking lots of daily-life pictures, which will somehow be transformed into books for the villagers to enjoy.  The trip was supposed to be in northern Thailand, but had to be re-routed due to the political troubles there.  So they spent about 10 days in Cambodia (Angkor Wat etc) and will do a week or so in Laos before returning home later this week.  Hmm, what did I do during the summer when I was 16?  I don’t remember.  I guess she will.

She said she is doing fine, eating well (we had our doubts, as she’s something of a picky eater at home), sunburned, taking lots of pictures, and has lots of presents for us.  What a kid.

February 26, 2010

C Word, Food

Comments Off on Phở

A friend of ours has been living with colon cancer for many years; longer, they say, than just about anyone.  I guess this qualifies under “world records you don’t want to hold”.  His wife told Eve recently that during that time they have eaten vast quantities of Phở, the northern Vietnamese beef noodle soup, because it is just about the only thing he can tolerate.  Also it’s cheap.  Fortunately we have some great pho shops right nearby on University Way.  I have always enjoyed the occasional bowl, but now in my chemo-altered state I find it to be the perfect meal, when nausea limits my interest to things that are relatively bland and hearty.

In an immuno-suppressed situation it’s important not to eat the add-in bean sprouts, basil leaves, and lime, which is unfortunate because they definitely add to the soup, but it’s OK, as the beef, the noodles, and the especially the broth are really comforting.  Also I can’t eat the little cream-filled pastry that comes with it.  We’ve had pho several times now since chemo started, mostly in its remarkably elaborate and effective takeout form (broth in plastic tubs, noodles and beef in cartons, add-ons in plastic trays, still for one low low price), and it has hit the spot every time.  They even let Eve bring it to my hospital room.  Bob says check it out.

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