Biopsy results

John, Dee and Ellen met with Dr. Spiess at Moffitt this morning. The kidney biopsy confirmed the previous supposition that we are dealing with clear cell cancer. The next step, all agree, is to begin taking Sutent, an inhibitor drug, which is typically given in a four week regimin with two weeks off right afterwards. Most likely, John will begin taking this drug, which is given in pill form, once a day, on April 1. We have fingers crossed that he will tolerate the medicine well and side effects will be minimal. We've got appointments scheduled for late in April and also in May to discover the effectiveness of both the Sutent and the brain radiation. So, for now, he remains patient, fatigued from the after-effects of radiation and just trying to "ride it out" as his sister, Margaret, says. We are enjoying lots of PBS shows on netflix and Dee and I try to come up with new menu ideas to tempt him.

Quiet Days

Texas family left this morning so today was quiet and for the time being, life will be focused on resting and getting strength back. The delayed effects of radiation continue to cause extreme fatigue so days are spent relaxing and trying to be patient. That must be where the term comes from, for being this kind of patient is an exercise in patience. Next doctor's appointment will be Tuesday, for the biopsy results. Thank you everyone, for all your care and concern.

March 22, 2010

Thursday John spent much of the day at Moffitt while they took a biopsy of the tumor on his kidney. The results will be available in about a week. This was tiring, but he rallied for the next few days enjoying the end of his visit with Anna, Nathan, and Soren, and the beginning of Pam and Raylene's stay, arriving from Texas on Saturday to visit and help out. We've had two short outings to have lunch since all this began, but at this point the delayed effects from the radiation are becoming apparent, which as we were informed ahead of time, are indicated by extreme fatigue. So for this week it seems, rest and recuperation are what's required. No tests and treatments for the time being.

Tuesday Morning

John here. I am trying to enter the internet superhighway by adding to this blog. The energy and effort involved in creating this blog and sharing of information by all and sundry is SO appreciated. Maybe it's a sign, but, while Will was home from Mountain View, we saw a huge snowy white egret in our back yard. He landed gracefully and wandered around for a while. I understand that the appearance of such lovely bird is a portent of good luck. I welcome ANY encouraging sign, supernatural or otherwise! I feel much better, more like myself, as the drugs in my system dissapate. I am proud to say that there is definitive medical evidence now that I actually have a brain!!!

Monday, March 15, 2010

It was wonderful having Lauren and Will here. We actually had lunch out Sunday, which was a first since all this. Were able to eat outside by the water in the great weather and cool breezes. All the fresh air made for good napping afterwards. Will and Lauren are back in CA now, but we look forward to Anna, Nathan, and Soren’s arrival early Wednesday morning.

Today a morning visit to Moffitt and consult with Dr. Fishman shed more light on the situation. Dr. F. seems to believe that the course of treatment going forward will likely be a medication called Sutent taken in pill form which would allow some travel and flexibility as long as John feels well and reacts well to the treatment. The biopsy of the kidney tumor on Thursday will yield more information, but should all go well, trips this summer including Will and Lauren's wedding in Hawaii now seem a real possibility.

Dr. Fishman had good news on the results of the bone scan, which came back clear!

March 12, 2010

Great day yesterday and today.  Yesterday John finished up his last radiation treatment (hooray!), and today he went in for a checkup with his usual medical doctor.

Other than that we've been enjoying the lazy days -- walking to Bayshore, listening to the thunder, and talking and talking. I have to say, after my experience these last couple of days, that John Robinson knows more about everything than any other person I know.  We talked about:

• The Marie Celeste
• Civil War causes, generals, strategies; greatest leaders and why
• Roman Polanski, movies and life and legal status
• Harper Lee, Truman Capote, and trial lawyers as depicted by TKAM
• First year of law school
• Frisky and Peaches
• Chapin street architecture and landscaping
• New Orleans - city structure, politics, history of founding
• Los Angeles - city structure, politics, history of founding
• Baseball in America (and Hank Aaron)
• "The Map That Changed the World"
• John McPhee and John David Love, Wyoming
• Shelby Foot
• Hawaii topography
• Bishop Estate and Kamehameha Schools
• Perceptions of Randomness and its applications to risk
• Education policy and NCLB
• Tom Wolf
• A neighbor that talked a lot about a friend named "Billy" that John figured out was William Faulkner
• Slide rules
• Using differentials to calculate how to lay out roads
• Clint Eastwood
• Chain gangs
• Reasons for implementing an insurance program for military personnel

... and etc, etc.  My reading load has tripled and my knowledge has increased at about five times its usual rate.  It's been really cool.

March 10, 2010

Only one more day of radiation treatment to go, and Dad is holding up like a champ.  Dad and I spent most of the afternoon at the Moffit Cancer Center, where they performed a full-body bone scan just to see if there were problems hiding in any other places.

All this week, Dad has been mostly energetic, alert, and pain-free.  With no work, reading, or blackberry to consume his attention, all of his energies go toward conversation with folks around the house.  I really believe that he's one of the world's great conversationalists, and we're all struggling just to keep up!  I picked the right year to subscribe to The Economist; otherwise there'd be no one around to nod at his musings on Greece's debt crisis, Chinese gender imbalance, the genius of General Petraeus, etc. etc. etc.

On a light, last note, we also visited Lynn at our trusty hair salon for an extreme makeover on Tuesday night, and Dad remarked that he hasn't been so aerodynamic since his first day of Army boot-camp.

March 6, 2010

John and Ellen consulted with the doctors at Moffitt on Friday and have decided to move over to Moffitt and work with doctors Spiess and Fishman who have good reputations and expertise in renal cancer. They plan to continue current therapy, add some more testing and postpone surgery while they see how their drug treatment works on the kidney tumor. Betty and Margaret left this morning, their visit was wonderful therapy. Will arrives on Monday, and we all look forward to that!

March 3, 2010

So nice to have John's mother Betty and sister Margaret here from Atlanta. They arrived Monday and have been providing wonderful Southern cooking and comfort since. John seems to be much better the last two days, and very much enjoying his family visit.

March 1, 2010

The weekend was filled with a good visit from John's brother Lee and his wife Betsy. Betsy prepared lovely meals for everyone and we all enjoyed seeing the Atlanta family and having a break from the radiation routine.
Anna and Soren flew home to CA very early this morning, John's mother and sister Margaret will arrive this evening from Atlanta. It's wonderful to see everyone and be surrounded and supported by family. John continues radiation today, which is causing increasing fatigue, but he stays in good spirits, an A+ patient.