Monday, November 28, 2011

Thanksgiving in the Poconos


Lovely Thanksgiving in the Poconos with friends: Prestons, Crawfords, and Nellsons.  Lots of children running around, a couple of lovely entertaining new Preston girlfriends (or friends, female), so busy times throughout.  The weather was great all weekend: bright and sunny with spectacular sunrises and sunsets.  One of my pleasures on these off-season visits used to be long walks in the woods.  At this point, a mile on the flat is challenge enough for me, but I did enjoy several strolls along the road by the lake.  But lots or reading, sitting by a roaring fire, talking, feasting (special thanks to Bob Nellson, on left in photo) and just enjoying friends old and new.

My health came up in conversation often enough that there was no awkward sense of avoiding it, yet not too often.  I did find that a late afternoon Morphine made it easier to enjoy sitting at the dinner table.  (In lieu of a forbidden glass of wine?)  I still have what feels (and even looks) like a soccer ball in my belly, and it can be painful.  Whether this is a residual effect of the abdominal bleed or something else I don't know; one of the tumors is somewhere in the pelvic area, so that is a scary alternative (I have not asked the docs).  Presumably the next CT scan in mid-December will resolve this.  In the meantime, the weekly Torisel infusion appears to be more tolerable that the previous regimen.  I no longer have a sore mouth, so I enjoyed pizza.

Thanks to Brad for cleaning out my gutters and sweeping the roof, to Margy for a nice visit, to Janet for a visit and taking my trash to the dump, and always to Francie and Sam and Giny and Don for hospitality in my PLP home-away-from-home.  Finally, to Helene for minding Cosmos (my cat) in NYC; he does not appreciate car rides. 

I did find it hard saying goodbye to people at the weekend's end.

Tuesday, November 15, 2011

California

My sister Diana and I went to California this weekend to visit her daughter, Allison, and family.  While I had seen many photos and videos of three-year-old Sean, I had not actually met him before.  A wonderful visit all around.  Sean runs and talks nonstop.  We went to the Children's Discovery Museum on San Jose which, among other delights, has a marvelous water play area, and to Ardenwood Farm in Fremont with a train and farm animals.  Allison and Thomas lead such busy lives that it was lovely to relax with them.

I am feeling much better.  Still have belly pain, enough to sometimes take morphine (milder pain remedies still not allowed). I have felt slightly nauseated for nearly a week, a minor if persistent annoyance.  One of the frustrations is not knowing what is chemo, what might be cancer, or what could be something else entirely.  I am not sure why it matters, but it seems to, to me.

Is it feeling unwell that constantly reminds me that I inhabit a different world from the one I was in before I was sick, or is that simply a fact of my new life, with its very different future?  I don't know.  But diversions like this weekend are welcome forays back into the land of the living.  Thanks, Diana, for arranging this.

Thursday, November 10, 2011

Update

I saw Motzer and the team today.  (Busy day in Motzerville; waiting room packed with patients.)  Compared to a week ago, I am feeling much better, with the pneumonia pretty much gone and the remnants of the belly bleed much less.  So everyone was cheerful and upbeat.

I learned a few things that Motzer may have told me last week, but I simply didn't take in; I wasn't functioning well. I am officially off the study combining Avastin and Everolimus. Even though I have now recovered from most of the side effects, they were simply too many to ignore. So today I started a new regimen:  weekly infusions of Torisel (Temsirolimus).  Like Everolimus, this is a kinase inhibitor.  Allergic reactions are sufficiently common that the infusion starts with Benedryl, followed by the Torisel; the whole process takes about an hour. Fortunately I had no adverse reactions. In mid-December I will have more CT scans, without contrast, due to my allergic reaction.

Is this good news or bad?  The October scans showed that the combined therapy  was showing some efficacy (shrinking the tumors), and effective treatments for late-stage renal cell carcinomas are rare. But if the treatment made me so sick that I could not function, it is not worth it and cannot continue, or so is the conclusion of the MSKCC team.  This makes sense for now.  Treatment is clearly a process of trial and error, each patient different. The good thing about being at MSKCC is that they have seen so much and have many options.

My sister Diana and I are flying to California tomorrow for a quick visit with her daughter, Allison, and her family. Allison is an oncologist, so I should be in good hands all around.  Three-year-old Sean should keep us entertained. Back to NYC on Monday.