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.
Blood smear was normal;
Numbers were up a little;
Next doc meet Thursday.
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.
Medical care is greatly improved by always keeping in mind Rule #1: make sure you’re in the right room.
Back to the clinic grind this week: Monday two units of red cells (I don’t know, maybe I’m getting tired of them), Tuesday a CT scan, and Wednesday a series of appointments: EKG, blood draw, bone marrow biopsy, meet with nurse. I got to SCCA a little late (stayed too long at a meeting at work) and rushed to the second floor (of six) where I expected the EKG to happen. After I checked in I was waiting rather a long time, but I figured that the schedule was messed up due to my being late and missing my slot. Finally after 45 minutes I asked what the deal was. The nice folks at the counter said “oh no, EKGs are on the fourth floor!” They thought I had just checked in way early for my biopsy.
I had already discovered that SCCA was having a Slow Elevator Day. One of the units out of order? Just too crowded? Who knows, but every elevator trip (and they don’t want patients taking the stairs) took forever. At that point I was way late for my EKG. Could they still do it? Did I need to have it before the other stuff? Does anyone know? I’ll check, sir, and someone will be out to see you in a few minutes. Sigh. It was now lunchtime and my hopes of getting something to eat before the biopsy were fading. At long last the EKG happens, mercifully quick but involving a large number of sticky patches that all have to be ripped off most painfully. Maybe that’s the test.
Back to the Moribund Elevators to go down to blood draw on the first floor. This time there were eight tubes to be filled to cover all the tests. And they wonder why I’m anemic. Also I gave a urine sample. All this was, I think, the exit interview for the clinical trial that I had just fallen out of.
Back to the second floor for the biopsy, only an hour or so late. Fortunately they were ready to go quickly. The people who do these procedures appreciate that patients might be a little nervous about having a needle inserted into their hip bone to draw out some marrow (really?) so they create a very nice relaxing environment. Also they have good drugs. Fentanyl, which I’d just like to point out is more potent than morphine, does an excellent job of taking the edge off the needle-induced jitters. The procedure itself took only a few seconds and as far as I know it wasn’t painful.
Then the nurse meet, which revealed that my blood numbers are still quite low across the board, though perhaps there was a little uptick in the hematocrit. I won’t get the biopsy results, or I guess the CT results either, until next week. Back to the elevators, still slow, and thus ended another day at the clinic, only about an hour longer than expected, which was pretty good.
Soon be over. OK, don’t get excited.
In last week’s episode readers may recall that I was headed back to SCCA for yet another platelet check, to see if I could get my next dollop of TRU-016. Despite the #goodplateletthoughts from my army of Twitter followers, my counts were even lower that day than they had been earlier in the week, so no treatment again. So much for social media being an agent of change. The good news, more or less, was that it was deemed OK to get a platelet transfusion to try to bring the number up enough to let me pass. My hematocrit was also low, at 24, so more red cells were also on the menu. On Sunday (Jan 22) I went in and got the double dip of blood products. Afterward as a treat I went to the Columbia City Bakery which I think is the best in Seattle.
On Monday I went back to the clinic again, for another blood draw (and another IV placement, just in case), and another round of numbers. Alas, even after getting a bag of platelets (which, I have to say, are a rather unpleasant brownish color, unlike the rich crimson of the red cells) my count didn’t go up at all. This is rather mysterious, and rather disappointing. We decided that I should see my oncologist that day to figure out what to do.
My oncologist is a busy guy, and like everyone else in Seattle was trying to get back on track after three or so days of forced leisure due to the snow and ice storms of the previous week (which in many parts of the country would have been called “a break from the bad weather”). So Eve and I weren’t surprised when he was an hour late for our 3:30 appointment. I was so stressed I fell asleep.
When he arrived, after a little discussion we agreed that it was time to give up on the clinical trial. The treatment has been working though we don’t know which of the agents is doing the trick. But we’ve tried what we can to get my counts in the right place to continue and it just isn’t working. Maybe we could ask the trial sponsors pretty please this time, but the whole course would be another three months of treatment, and it seems unlikely that my blood problems would get any better. And beyond the low platelets, which isn’t really a problem in daily life (the counts would have to get a lot lower to be a serious bleeding risk), the fatigue and achiness that come with low red cell counts are not something I want to live with indefinitely.
So, that’s it: no more trial. That phase is over. It’s a little sad to move on. I’ll miss the cushy service in the Clinical Trials Unit. We’ll hold off on any more treatment for a while to see what happens. I could resume taking Bendamustine and Rituximab at some point. Down the road, as always, there are many other potential therapies, both those already in the mainstream and new things still in trial. In the meantime I will probably have another bone marrow biopsy to see what might be going on in there.
On to the next adventure.
“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:
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”:
For comparison here is a widely-circulated pic shot in the same location under similar conditions eight years ago:
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:
Here’s some puppy sledding video even.
Sledding here in limbo … but I know it won’t be long.
Executive summary: good scan results, lots of waiting.
Last year I spent a lot of time at SCCA. There were stretches where I went there every day, including weekends, for a few weeks at a time. “Home away from home” as a fellow patient said. When it came time to detach and go back to normal life it felt like there was something missing (I suppose there must be a medical equivalent of Stockholm Syndrome). I thought those kinds of days were over, but this past week (Dec 5-9) was almost a replay.
On Monday I had my Day 15 treatment of TRU-016. This meant having a blood draw in the lab in the morning to assess whether my various counts were within range to get treatment. Since I was getting infused later the lab went ahead and placed the IV. This was efficient, and avoided another stick, but it meant I had to go to work in the intervening 3 hours or so with an IV in the back of my hand. This is a little maudlin. By now I’m entirely used to being stuck but my co-workers were clearly taken aback. Fortunately the actual infusion was uneventful. In fact one of the main benefits of being in the clinical trial is getting infused in the special Clinical Trials Unit rather than the regular infusion area. I get in much quicker, it’s less crowded, less noisy, and by now they know me.
My blood results on Monday showed a hematocrit of 24, which is low enough to justify getting a couple of units of red cells. Nothing like fresh red blood to make everything better. The transfusion was scheduled for Tuesday at 5PM (it has to be done at night, you know). I got there on time, knowing that two units can take over 4 hours, and with the usual delays I could be bumping against closing time at 10PM. It seemed to be taking a while to get started. Then my nurse came in and said that although the appointment had been made, the blood hadn’t been ordered, so they were looking for one of my docs to order it. But even then getting it from the blood bank and getting it to my room could take … 3 hours. Big sigh. What could I do but wait? I already had the IV in. And I really wanted that blood. And when you really want blood nothing else will do.
I guess strings were pulled and favors cashed in, all for me, because the first unit showed up by 7PM and was pumping away by 7:15. Would we have time for both? Maybe, said the nurse, if we turn up the rate. Crank it up, I said, and up it went. I tried to be particularly still so as not to create any patient-side occlusion. In the end the second unit finished at 9:55 and I scampered out the door as they were turning out the lights.
On Wednesday all I had was a CT scan. This involves yet another IV so they can pump in the contrast dye that the CT detects. It also involves fasting for a few hours, and drinking some water-like stuff for an hour beforehand. This went smoothly, though it had to be rescheduled from Thursday so that the results could be ready for my meeting with my oncologist, who is only there on Thursdays. So this was a short day.
Thursday started with the usual blood draw so Dr Green could look at my numbers at our meeting. Of course the CT results were the main thing. And? The treatment does seem to be working: 60% reduction in volume of the tumors that caused the concern back in September. “In a word, terrific” said Dr Green. “So the treatment is at least doing you some good, that helps me sleep at night” he said. Also “that’s a joke.” We do have a good time at these visits, at least when the news is good. And this is good news. Still I have to carry on with the next 4 months of treatments to run the course of the trial.
Lastly on Thursday I had to get my next round of immunizations, replacing the immunities I lost last year with the transplant. Hep-A, Hep-B, Polio, something. I went back to infusion, things seemed to be taking a long time (this was regular infusion, not the CTU), and whaddaya know: “the drugs were never ordered, we have to find the doc, then it will be 45 minutes.” This had a familiar ring to it. I could come back Friday, but no. So I waited and eventually took my shots. Not as bad as an IV, but still unpleasant. (And the next day I really felt terrible from the after-effects.)
Altogether close to 20 hours at the clinic in 4 days, but with a solid dose of good news. And I don’t have to go back until my next 2-day, Dec 19 and 20. An early Christmas present.
As regular readers will recall, I was supposed to have the second round of my clinical trial treatment (Rituximab + Bendamustine + TRU-016) a couple of weeks ago (Nov 7 and 8), but it was delayed due to pneumonia and low platelet count. Yesterday I came in again, hoping I’d be deemed well enough. My cough was still rather bad sometimes, but yet another chest Xray showed the Pneu (I think of it as “the icy hand”) was under control, and my counts were all good, so I was deemed ready for chemo. It’s hard to get really excited about the opportunity to spend a couple of days hooked up to an infusion pump getting filled with mysterious and semi-poisonous fluids, but both Eve and I felt greatly relieved when the docs said it was a go.
So yesterday and today I was infused. There was a bit of nausea last night; I should have taken the Zofran they offered during the day. But I have some at home, and it did the trick. I’ll be taking some again today. I have to prepare my digestive system for the Thanksgiving marathon. And yes, I’ll be making my famous dinner rolls.
The next event, probably, will be a CT scan to see if I’m responding to treatment. That will happen in a couple of weeks. I am hopeful that there will be much less of interest to report going forward, at least about non-puppy topics.
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).
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?
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):
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.
Alternate titles: Pneumonia Month, A Turn for the Worse.
Since having a bad pneumonia day a couple of weeks ago I had been getting better, but the hammer came down again this past Tuesday (Nov 15) when I started coughing a lot. By Wednesday morning I was once again collapsed on the couch with a fever. Eve called SCCA and we went in that afternoon. At one point my temp was up to 104°F (40°C) which is cause for alarm. I was started right away on hydration and antibiotics, but it was clear that this was more than we could handle at home so I was taken by “medical transport” (aka ambulance; my third such trip so far) to UW Medical Center Hospital (just a couple of miles away) for a nice stay.
I guess it’s a good thing I didn’t go to Taiwan. Though maybe the warm wet tropical climate and hot stuffy meeting rooms full of shouting nerds would have been just the thing. Maybe not.
Also, just to report, this past Monday (Nov 14) I was supposed to get my next round of R+B+T chemo. But I didn’t, because my platelet count (56K) was too low (spose to be 75K). We’re waiting until next week, which is supposed to be the max waiting time (6 weeks) according to the clinical trial rules. It’s all up in the air at this point.
I’ve been getting more hydration and antibiotics here in the hospital. They also offered me all the medications I was taking when I was here last year after my transplant (this is Day 541, by the way), oddly enough. As I write this from my hospital bed on Friday I’m much better (a unit of red cells certainly helped; my hematocrit was 24) still coughing but quite a bit less. No fever or pain, eating and drinking, moving about, blogging (which uses more calories than running a triathlon, I hear). But several test results remain to be seen, and my fever has to be down for 48 hours. Plus they always keep you longer than they say. So maybe I’ll be home tomorrow, maybe Sunday.
I’d be anxious to get home in any case of course, but especially so now because of the presence of our new puppy Oliver. He arrived, as it happens, on the same day I took my wrong turn, i.e. Tuesday. Hmm. More about that in the next post.
Also, regarding “Occupy”, my palatial hospital room looks down on the Montlake Cut, which is right near where the Nov 17 Occupy-associated “Jobs Not Cuts” demonstration took place yesterday. I couldn’t quite see it from my window, and at that point I couldn’t get out of bed much anyway. Too bad I couldn’t be there.