B is the word.

June 12, 2012

C Word, Family

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Today we had our go/no-go meeting with the attending doctor at the SCCA allogeneic transplant unit, the very natty Dr. Jerry Radich. There wasn’t much question about going ahead, but this was the time to go over all the findings of the tests from the last two weeks, look at the details of the protocol, and make sure everyone agreed to proceed.

Everything looks good. There are no signs of progression to leukemia, which has been the main concern. The lymphoma is also not present, by both scan and by blood and marrow markers. All my organs (liver, kidneys, lungs, heart, brain?) are performing normally. My neutrophil count is still quite low, but platelets are good, and hematocrit is a not-too-shabby 28. I have a sibling donor who is a perfect match. I am relatively healthy, and relatively young, for this procedure. My MDS abnormality is one of the less-bad kinds. All these factors point in one direction, which is a successful transplant, with less likelihood of bad GVHD. So, all things considered, it’s a happy outlook. What could go wrong?

Tomorrow (June 13) I’ll get my Hickman catheter. Friday I’ll start chemo. It is notable that the point of this chemo (and total body irradiation on the transplant day) is not attacking the cancer, but wiping out my immune system so that the foreign stem cells can have the best chance of moving in and taking over. It’s pretty much the same stuff used for actual cancer treatment, though.

In other news, it was Oliver’s 9-month birthday yesterday. Here’s a recent pic (click to get full size):

Oliver at the beach on Lummi Island

This was on a Memorial Weekend trip to Lummi Island. It was his first encounter with salt water. He couldn’t understand why it didn’t taste good like water always has, and kept trying different parts of the beach looking for the good stuff. Eventually he threw up.

 

June 8, 2012

C Word, Family

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As I have written about endlessly, on Wednesday, May 30, I re-entered the transplant program at SCCA. This transition is rather odd because I have been to SCCA probably 100 times over the last 18 months, so I’m no stranger to the place, yet now they treat me like a new patient. But the transplant program is The Big Kahuna, the main reason that SCCA and Fred Hutch were created. People come from all over the world to be transplanted here. So my moving only from the 4th floor (general oncology) to the 6th floor (transplant) is somewhat unusual. But hey, I got a new ID card. (And the finance lady said insurance will cover the whole thing, again. Yay.)

My brother Mike also got a new ID card, because we went in together:

He’s the old guy on the left. I’m the old guy on the right. As it turned out his registration somehow got his middle name wrong (“Wilbur”?) which created some lively confusion for an hour or so. Always something. In fact they’re still calling him Wilbur this week.

We met with the allo-transplant team PA, who went over my medical history one more time. He asked: “when was the last time you were at work?”  I said: “uh, yesterday.” He said “wow, after all those things that have happened you’re still working? You must be some kind of tough guy.” Yep, that’s me, Mr. Tough Guy.

We both underwent lots of tests, more for me than for him, but he had to be shaved for the EKG and I didn’t. Perhaps the most amusing was the Pulmonary Function Test, performed by Pulmonary Pat, a tech who has apparently been doing this for far too many years. She is very upbeat, which is good when exhorting the patient “blow it all out, hard as you can, more more more!” in order to test lung capacity. I pushed 5.4 liters, which is Normal. But there is such a thing as too upbeat, you know?

Mike was there for three days, and was occupied with tests and meetings and things for about 5 hours total. “Seems like it could have been done in one day” he said. I assured him that waiting in the clinic is a key part of the therapeutic process. His last meeting was to obtain consents to do all the work. They threw me out of the room so they could talk to him privately to make sure he wasn’t being coerced into being a donor. (There’s a “bad blood” joke in there somewhere.)

The big procedure of the week for me was a bone marrow biopsy, actually an “aspiration”. In any case it involves putting a needle into the hip bone. I’ve had a few of these, and they aren’t pleasant, but I was more apprehensive this time because after the one I had in February I was in pain for a couple of months.  “That’s unusual” they said. I mentioned this, in pointed terms, to the NP doing the procedure this time, and it has been pretty much pain-free. So: it pays to complain.

The intent of the biopsy was to determine where the MDS is at now. All the results are not back yet, but the key finding was that the blast count was negligible, which is pretty much a direct indication of non-progression to leukemia. Pretty good news. Probably means the azacytidine did its job.

Next week things will ramp up. On Wednesday I’ll have a new Hickman catheter installed. This is a relatively permanent tube, aka central line, that goes right into the heart, thus giving easy access to the bloodstream for all the inputs and outputs that happen during transplant and followup. In the last few months I’ve sometimes wished I had one as my arms have gotten regularly poked. Now I will. It does have its downsides though, like making it harder to take a shower. And having to be careful that it doesn’t get caught on something and ripped out of your chest, which would be bad.

On Friday June 15 I’ll start five days of chemo in the runup to transplant day. The drugs will be fludarabine and treosulfan. There is a day of rest (more or less), then on the morning of transplant (June 21, if all goes to plan) I’ll get a single shot of Total Body Irradiation (I had 8 last time) to “stun the immune system” before getting the new stem cells later that day. Those cells will have been harvested from my brother the day before, following his several days of being injected with GCSF, aka Neupogen. This, we are told, doesn’t really increase production of stem cells; rather it encourages them to leave the bone marrow where they normally hang out and go into the bloodstream (aka peripheral blood) so they can be harvested via apheresis.

Simple as that. Then I just sit back and wait to get better. E-Z when you’re a tough guy.

 

February 22, 2012

C Word, Family, Sports

Comments Off on Thursday to Thursday

In my previous gem-like report, I mentioned that I was seeing my oncologist again last Thursday Feb 16 for more elucidation of my blood production troubles. Indeed that meeting happened, but the results are a little hard to describe (hence my delay in describing them).

One notable factoid is that my blood showed an “extremely high” level of something called ferritin, which as the name implies is involved with storing and supplying iron to the system. High ferritin levels are associated with a variety of conditions as unpleasant as they are unpronounceable. So this is a matter of some concern, on top of my continuing (though apparently improving) pancytopenia.

There is also some evidence, from the biopsy cytogenetics, of something known as 5q-minus syndrome, which is a blessedly short name but even more mysterious it seems.

In the past week lots and lots of blood has been drawn:

for a series of tests of apparently increasing sophistication and obscurity. Some of it has been sent off to remote labs; it’s hard to imagine a test is so unusual that Fred Hutch can’t do it, but there you have it.

I’m meeting with another doc Thursday (Feb 23), hoping that more mysteries will be revealed from all that testing, though perhaps not looking forward to the recommendations for treatment. Eve is hoping to attend the meeting via Skype from Silver Star where she and Julia and Oliver are enjoying the excellent snow. Should be fun.

On the plus side I’m feeling pretty good this week. Today I finally got a haircut, so sadly all the Trump bronze is gone. Maybe I’ll be in a position to choose a new color after tomorrow. I also rode my bike today for the first time in quite a while, just a few miles on the Burke-Gilman Trail, but it felt great, except for the uphill parts.

 

 

 

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.

 

November 19, 2011

Family

Comments Off on Oliver

As I’ve mentioned, there is now a puppy in our household. First a pic, then the entirely too long story (which could be much longer, I assure you).

Ollie on the front steps

That’s Oliver, coming into our house for the first time, last Tuesday (Nov 15). Pretty darned cute, no?

I haven’t written before about Our Really Bad Summer, but I guess I have to do so now to explain how we got here. Many of you will have heard the story.

On June 20, Eve was playing soccer in the evening with her “old ladies team” (over 50). It’s a great activity, but as it turns out, a little dangerous. The other team was short on players, so Eve was playing forward for the other team. She was advancing on the goal with the ball, confronted by the goalkeeper (her regular team’s keeper, that is). The keeper challenged, they crossed shins, and Eve’s tibia was cleanly fractured, about 8 inches above the ankle, right through the shin guard (we should sue). This was painful. The ref said “play on!” Eve said “I don’t think so.” Eve said later “I always thought she played a little aggressively.”

As it happened I was out of town, at a meeting in Columbus, Ohio. Annika was able to take Eve to UW hospital (yes, the very same) where her leg was stabilized and she was put on a morphine drip. I only heard about it when I called to check in that evening.

That was bad. At that time we were in the middle of a kitchen remodel, so the house was already torn up, making life difficult. The next day, June 21, our beloved dog Cali escaped from the backyard and went roaming around the neighborhood, as was her wont. Unfortunately this time she was hit by a car and killed. Annika answered the door when the animal control officer came to report the incident, and broke down. The officer called my cellphone, just after I had finished my talk at the conference. I felt as though I were in one of those bad movies where God would look down and ask me if I knew why I was being punished this way (as it turned out she didn’t, so I’m still wondering).

I ran right to the airport and flew home, despite violent thunderstorms in the Columbus area (“hey, what else could go wrong?”). The kids were not happy campers. I waited until the next morning to go tell Eve the news; she was still doped up at the hospital. This was really bad.

Recovering from a broken leg is not easy, especially when your house is torn up. Eve was in a hip-to-toe cast for a week, then a knee-to-toe cast for two months, then a walking boot for another couple of months. This pretty much wiped out the summer, which is especially hard on someone who loves to garden, and to play soccer. She’s still doing physical therapy for it to this day (Day 152).

My response, a week or two after the incidents, was to come down with shingles, which is said to be a condition brought on by stress. I guess there must have been some stress. That lasted for a few weeks of pain and discomfort. Acupuncture seemed to really help.

So, as Eve and I healed, and the kitchen project (which could be the subject of its own post, but I’ll spare you) wound on, our thoughts turned to our missing pup. A broken leg will heal, but a lost pet will not. We’ll always miss her, but we felt we had to do something.  Eve took to the intertubes, and eventually we convinced ourselves that we needed to get another dog of the same breed.

Cali was a Kooikerhondje, a Dutch spaniel-y breed that used to be used for a kind of duck herding (you can read about it). They also appear in many Old Master paintings, Jan Steen in particular. I picked her up from the breeder in the Netherlands after a meeting in Paris in 2005. Why an expensive trip to get an expensive designer dog from Europe? Isn’t that a little … excessive? Yes, it is, very excessive. Sometimes you just have to do things that are a little crazy. And she was indeed a great dog. At least it wasn’t a Maserati or a SubZero fridge.

But twice? Isn’t that beyond excessive? I suppose so. Grief will move people in funny ways. Anyway: after a great deal of browsing and email and phone calls and family discussions, Eve reserved a newly-born male puppy from a breeder who is an official in the Dutch Kooikerhondje association. The timing worked so that a trip at the right time to pick up the puppy (8 weeks) would also permit going to the annual championship event of the Kooiker club, at which our breeder Carla was a head judge. Over 130 Kooikers were there. Below are the male (left) and female winners. Pretty handsome, don’t you think?

Kooiker show

I guess it was a wild time with all them dogs about. Eve was able to attend with Carla and with a couple of American Kooiker enthusiasts who came over just for the event (at least we were picking up a puppy, eh?). Here is Eve holding Oliver (who at the time was still called Trooper, per the T naming theme seen at the bottom of this page):

At the show

That’s Ollie’s sister on the right, being held by Carla’s daughter. The adult Kooiker in the middle is their father, who clearly would rather be somewhere else (like any dad).

Eve and friends were also able to visit an “eendenkooi” (which means “duck trap”; “kooi” is the origin of the English word “decoy”), which is the arrangement that was used to catch ducks, for which the Kooikerhondje was a key component assisting the Kooiker (the trap guy). The site is a combination nature preserve and historical site and apparently was quite fun (despite what you might be thinking). (No pix, sorry.)

Oliver is now home and causing trouble as puppies will. I’m looking forward to seeing him when I return home later today.

 

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