Sunday, January 25, 2015

One cycle to go

It's a beautiful and unseasonably warm day today. Can't say I feel great after Friday's infusion, but compared to last weekend it's a vacation.

On Friday I was momentarily excited when it was mentioned that the PICC could come out that day, but Susan (the other nurse practitioner) cautioned against it. Even the two infusions I have left to go could damage veins and risk infection if delivered by normal intravenous means. So I guess I'll gut it out until Feb. 13. The problem is that the skin around the PICC has become extremely irritated with horrible itching. As usual a legion of PICC-nurses came by to look at me (typical reactions: "that's weird...I've never seen that before"...etc) and we're trying the umpteenth experiment to fix the problem. I seem to be a real outlier in the PICC-world.

Also, the lab work revealed a very low neutrophil count (i.e. compromised immune system), below the level at which they will normally proceed with infusion.  After consultation with the oncologist however I was, as I expected, granted a topologist's exception and we proceeded anyway. In earlier cycles at Day 8 (the second infusion of the cycle) I got stomach injections of "nulasta", a whitecell booster that worked extremely well. Then it turned out the insurance company wouldn't cover it, despite repeated appeals by the oncologist, so now we're winging it with prophylactic antibiotics. I'm supposed to be extra careful about exposure to sick people, but that's pretty hard to do. I did promise them that I wouldn't handle any rabid bats for a while.

To be honest I'm pretty damn tired of the chemo. Taking a cue from Gone with the Wind I told Sarah and Dana (one of the infusion nurses; great sense of humor) "As God is my witness, I will never do chemo again". Sarah's reaction was "never say never", but the way I feel now I really would not. Either find another treatment, or die trying, is my current position. Well, sorry to be overdramatic but when the final cycle is over and the next CT-scan results are in, I really have no idea what happens next. The optimistic view is that I'll be "cured", with the fallback position being, I hope, the new immunotherapy if it gets FDA approved.

Anyway that's neither here nor there and largely irrelevant for life in the moment. Mainly I'm just looking forward (understatement of the century) to being off chemo, PICC-less, and heading out on hikes. Get out on the bike as soon as my strength is back, or maybe before, as who needs strength for my version of biking (Sammamish river trail, flat as a pancake).

Meanwhile life is great, if I ignore the chemo! In my class we're studying a beautiful subject known as Galois theory, after early 19th century French mathematician Evariste Galois. He was a visionary far ahead of his time who developed his theory at age 19 and was killed a year later in a duel. My senior Ph.D student has a post-doc offer from UBC, one of his top choices, and is short-listed at a mathematical institute in Copenhagen that would really be cool. It's a big psychological boost not only for him but also for me. My junior Ph.D student is doing extremely well and may turn out to be even better. So, although I'm pretty much a has-been as far as my own research, I seem to be having renewed success with Ph.D students.

And of course, Kaia and Finley always cheer me up! Recently Kaia and I had a long conversation about dinosaurs, a subject on which I was more expert at age 9 than I am today. Among other things she wondered whether you would be squished if a Brontosaurus stepped on you, a question I was able to answer authoritatively. She also was quite proud to show us her new desk in her bedroom (she's growing up!!) and all the art projects she's been working on. Finley meanwhile continues to amaze me with his concentration span for building projects (railroads, legos etc). Needless to say he can also be a little rascal at times, as when he insisted that he wanted an entire half a loaf of bread for himself.
"But Finley, you'll turn into a loaf of bread," I cautioned. To which he replied very seriously "No I would not."

Ongoing support from family and friends has been wonderful and means a lot to me. Wendy has been making me all kinds of yummy things: a delicious new potato-soup recipe, superhealthy smoothies, and COCONUT OATMEAL COOKIES. Yum!

I was very touched by moral support from an unexpected source, namely my Italian teachers Elisabetta and Roberta, co-founders of the school Percorso Italiano where I've been taking lessons since 2010. I had told Elisabetta about my cancer because she has a lot of experience with relatives and inlaws who have had it (her mother died of it). I haven't had any lessons for a while, and told Elisabetta I better wait until Feb. 2 during an "off" week. To my surprise she and Roberta wrote back together offering to come out to our house Saturday (yesterday) for an Italian chat, and that they would bring dolci (sweets). Although very much appreciating such a kind offer, I said it wasn't a good idea as there was no telling what condition I'd be in on Saturday. And that was that, or so I thought until Saturday afternoon while working in my office an email came in saying (in Italian, of course) telling me to "look outside our front door" when I had a chance. It turns out that the two of them somehow came up the steps to the front door without either Wendy or I noticing and left a package of pasta, homemade pasta sauce, a homemade cake, a book and a note saying to get well soon because "Percorso Italiano isn't the same without you". I was totally floored by this, still haven't gotten over it. The pasta and the cake are delicious!

It really is a Beautiful World. The wonderful Brown family is coming over for enchiladas this evening and I had best sign off to rest up for the Nutty Nut Show. To be followed by Downton Abbey of course.

So glad I avoided duels in my youth!


1 comment:

  1. I can't believe that the insurer is balking about Nulasta. I know it must be very expensive because it's new, but my friend Wendy had it more than once while she was on chemo. And bummer about the PICC skin irritation. You know both your mother and I are prone to topical dermatitis from things like bandage adhesives and antibiotic ointment if they're on for a prolonged period, so there may be a genetic component. What anti-itch creams have you tried -- e.g. with hydrocortisone, benadryl?

    And--not to sound mawkish (heaven forfend!) -- but you really are an inspiration. :-) And I'm not surprised that Percorso Italiano is not the same without you! But that was awfully sweet of Elisabetta & Roberta.