The Mother Ship

MD Anderson was everything we expected, and more, like the mother ship of all things cancer. Tremendous facilities, mindboggling organization, surprisingly gracious at all levels and super confidence building.  We had the feeling if they don't have the answers here, there are no answers.  We were impressed with Dr Jonasch (pronounced Yonash) to the point of having to remind ourselves not too be so awed that we forgot all our questions. There was something about knowing that everyone we saw was either dealing with cancer or treating cancer. In the waiting room, on the shuttle or at the hotel, we met several people who shared their stories and listened to ours.

We saw Dr J on Monday, then had blood work, Bone Scan, Brain MRI, and chest/abdominal CT Scan on Mon/Tues, and saw Dr J again on Wednesday.  Although there was a lot of time in the waiting room, we were impressed that they were able to keep such a tight schedule. At home, it takes days/weeks to schedule these tests. 

Our big question was whether to have surgery to remove the tumor from the right kidney (partial nephrectomy) and the remaining adrenal gland.  Bobby had been on Votrient for 24 days in March, and had to stop for the neck surgery (bleeding risk), and so had been off Votrient for 5 weeks as of last week.  There were three potential scenarios:

1. Progression - surgery would need to be seriously considered, unless the progression was elsewhere (bones/brain).

2. Stable/No change - surgery questionable.

3. Regression - the Votrient was working.  Stay on it.

In our minds the least likely scenario would have been to see regression in the tumors after just 3 weeks. And yet, that's exactly what happened!  Needless to say, we were very surprised. So Bobby will go back on the Votrient, and we will learn to manage the side effects which were mainly high blood pressure and fatigue.  After just a couple of days, he can already feel the lack of energy. 

A couple of takeaways:  Dr J said we've made good treatment decisions, especially in a time when there are so many options and there isn't a good flowchart for know which treatment to do when. Nor is there a good way of predicting who will do best on which treatment.  Also, he confirmed what we thought about the value of exercise, nutrition and positive attitude.  He said there's evidence that it does make a difference, even though Bobby probably has a slower growing type of renal cell as evidence by the fact it took over 6 years for it to metastasize. I say it certainly can't hurt to stay active, positive, and faithful.

As a bonus, we were able to visit with a friend from the Tulsa area who has been at MDA since January. Tina received a stem cell transplant for myelodysplastic syndrome (MDS), a blood cancer.  She is on the home stretch of her 100 days post transplant.  Please join me in praying that the last few weeks will go smoothly, that there would be no rejection and that she can come home soon. 

We also had a treat to be able to stay the night with old friends Randy & Janet Nelson. "Ozzie" was Bobby's flight instructor in pilot training back in the day, and we have kept in touch over the years. They live on a beautiful lake outside of Houston, and we thoroughly enjoying the short time we had to visit.

As always, thanks for thinking of us and checking in.  Love, Juli

Houston Bound

Bobby's checkup Thursday with Dr Fell went great.  It's been less than 3 weeks since surgery, and he's already been cleared to resume regular activities. It's great to have him back to driving and mowing the grass, and yesterday he even took a short (17 mile) bike ride.  He really is pretty amazing.

We are driving down to Houston tomorrow for Bobby's appointment with Dr Jonasch at MD Anderson, at 8:30 Monday morning. At this point, we don't know if we will be there a day or a week, depends on what he recommends.  We are going in with an open mind, hoping he will give us a fresh  opinion on what to do next. Specifically, we want to know what he thinks about the partial nephrectomy option to remove the tumor from the right kidney. But we look forward to hearing what he says about treatment options in general, especially for someone in Bobby's situation with slow growing tumors. 

As part of the preparation for the visit, we had to complete a 9 page medical history form.  When we lay it all out and look back at the past 6 1/2 years, it's incredible that Bobby is doing as well as he is: lung, adrenal & brain surgeries, biopsies, scans, chemo, bizarre rashes, IL-2 treatments, radiation, even a dog bite. If we'd been told all this would happen in advance, we never could have imagined going through it, and now looking back we know we truly cannot do it in our own strength. Only God could have supplied the endurance we have needed, especially under the persistent cloud of grief since losing Leslie. We depend on His grace every single day, and trust that it will be sufficient. That sure doesn't mean we do everything right, I have had lots of bad days, way more than Bobby, but each time, He pulls me up and sets me back on track, and for that I'm grateful.

Looking ahead to the next step,

Juli