Well, Monday we had the consult at UCSF. Nothing much new or unexpected. Given the tumor status, my primary ONC seems to be charting the proper path, and we are moving as well as can be expected. I had been pushing for a visit with the Surgical ONC, but their Tumor Group decided to start me out with the Medical ONC, so there we started. Man, the paperwork they wanted! Being out of the fee-for-service side of things for 10 years or so, I had forgotten what it was like. Ah well, at least I can remember all the hoops that I had to jump through for for a STAT transfer from the ER to UCSF; that gave me a recent perspective to work from. ER transfers are easy compared to this!
Most of the encounter was training working with the Fellow who was partnered with the UCSF Urology ONC Clinic Doctor/Professor. Been a bit since I worked with an "adolescent" doc. Kind of fun. Didn't realize how much it could amuse me, nor how much I missed it. In the end the Fellow got it right (only 3 or 4 trips to the exam room to examine me. God, were we all like that as students and "fresh meat"?), and then the UCSF doc came in to review the findings and discuss the care with us.
Had a couple of fun moments with the ONC and the Fellow. Mainly around talking about philosophy of care--I described mine as "scorched earth" and wanting to be aggressive. The Fellow got rather pale at that phrase, but the doc seemed to get it. He certainly loosened up, and talked about how it would be nice to be able to do the Craniotomy and the Nephrectomy (Kidney removal) at the same time; so I passed on how I had asked the Neuro folks if they could invite a Urologist in to assist for the procedure on Thursday. The doc chuckled, the Fellow tensed; and Robin chimed in with "He's serious". Then the UCSF doc apologized for being a bit of a "cowboy" and looked rather wistful. I think he enjoyed the banter a bit.
Most of the information was about clinical trials currently at UCSF and also coming down the pike. He also related the latest stats for Sutent (5% Complete Response), and Interferon/Interleukin-2 (about 8-11% Complete Response). Looks like the long term goal of IFN/IL2 is still the best option, which might mean a road trip to Riverside for a consult. Have to look for something closer and push for it. Being away for a week at a time would be very hard on the kids. Screw staying in the "system" if it means hardship for Robin and the kids. BTW, for the non-medical readers, "Complete Response" = Cure. Everything else is just window dressing and "buying time".
Tomorrow we are taking the kids to the beach to play and tell them about the surgery in a relaxed setting. This task duty scares me more than anything else that I have ever done. Not the surgery mind you--that is just a small burr hole, a quick swipe with a router, a bit of cutting and scooping, close it up and drive in four screws to keep everything closed--no fear there. No, sitting the kids down and telling them enough to set them at ease, but not enough to scare the crap out of them. That will be hard. Terrifies me. Robin and I talked it out, we have a plan, and God will show us the way--or hopefully knock me upside the head when it is time to shut up and be "Just Dad" instead of "Nurse Dad". Thank God they saw the wound and the sutures from the initial excision on my scalp. They both thought that it looked "cool" (Oh, to be six again); and it gives them/us a made to order baseline for the explanation.
Found out an interesting tidbit today when we finally took the paperwork in to the bank to convert all our accounts to the Family Trust; it seems that a Trust cannot have and Overdraft Line of Credit on bank accounts. At least, not at WaMu. Ah well, we have structured everything as best we can, and now all is in the Trust name, so the kids are protected as best we can. That is the important thing.
The rest of the last few days have been nice, we spent some time at the Castro Valley Fair and the Renaissance Fair. Did a bit of walking and spending; ate way too much, spent way too much, and bought a few presents for friends and family. Fair warning to Lisa, Ashley and the KPHC crew: I found something to immortalize your "WWFD?" comments and it is in the mail to you. Don't worry ladies, it is fairly cute--at least I think so--and the rest of you will learn more later. I have a picture and the full story to post after the present makes it to E'ville.
Let's see, what else? Books and toys are picked out for the stay in RWC. The WiFi does not seem to be built out yet, so the work laptop stays at home. Connectivity/Web/Something To Do will be limited to the Netbook, iPod and PocketPC phone. That's OK. With those three devices I can get into worlds of trouble fun; and, if nothing else, hack my way into just about anything that interests me. Might be fun to RAS my way into the lab results on my PPC phone and check out the results before/as the nurses get them. Haven't done that in a bit. Have to find out if I remember how. Worst comes to worse, I will be able to use my PPC phone to update the blog and send out an "All clear" for the family and friends. Certainly easier than individual emails; and I just might be able to add a picture or two of the wound. Ooh, goody! Scalp porn!
Contact updates for the week are quite full. A couple of friends from high school found my profile on Facebook and contacted me. Great to hear from them. I really should be writing to them instead of typing this, but I felt the need to vent. Also ran into an old friend: To Bill and the Diablo NSG folks--I miss you all, and it has been great to hear from you.
Well, time to take a walk and crash. Oh, that reminds me. One of my favorite authors is Jerry Pournelle. He has written for many fields, including Science Fiction, the National Space Advisory Council and various computer publications. I have been following his writing for about thirty years, and over the last year Jerry has been blogging about his experiences with a Brain Tumor and hnis treatment at SoCal Kaiser facilities. Many great observations and insights into the whole process of cancer diagnosis, treatment, and recovery. Who would have thought that his experiences would be helping me now?! Anyway, his blog is at www.jerrypournelle.com and is titled Chaos Manor In Perspective. The rason a walk reminds me of him is that one of his tricks for fighting the steroid manis is taking a walk--as long as you can--before you go to bed. I find it is working. The meds just give me nightmares and I wake up in a cold sweat.
Be well. Back soon.
1 comment:
thinking and praying for you!!!
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