The M Word

Well, well, well.

We saw Dr Keller for a 3-month checkup last week. As usual, we took a look at the current scan next to the most recent scan, then, then clicked through the images to measure the changes in the tumors.  When this image came up, we all took a double-take, and Dr Keller said, "oh my, that's practically miraculous!"

Where three months ago (image on the right, circled in red) the the 4cm tumor had practically engulfed the adrenal, there now sits a perfectly normal upsidedown v-shaped adrenal gland. Miraculous, indeed. We asked Dr Keller if he was looking at this scan for the first time, would he diagnose cancer and he said, "absolutely not, it's perfectly normal." The tumor in the kidney (which you can't see on this image), while not as dramatically improved, appears to be dying as well. And the already-small lung nodules are also even smaller. A great checkup, to say the least.

We don't toy with the word Miraculous any more than we have used the word Cure in the past 7 years, as the chances of curing metastatic renal cell cancer have been virtually nil. But there's no doubt that Votrient is working, and the cancer cells are dying, and we are certainly moving in that direction. Ah-maz-ing, is all I've got to say about that!

Bobby will continue on Votrient for three more months, then another checkup.  The side-effects continue to challenge him as it really affects his energy level, and he just feels "lousy" much of the time. He's learning to lower his expectations about what he can get done, but it's not easy.  

The true miracle is that God continues to sustain and encourage us despite the always-present cloud of uncertainty.  He continues to give us hope and faith to believe that all things are possible, that He is in control and has a plan for good for our lives. It is our desire that He would use our story to bring hope and encouragement to others. We had an opportunity to share our story in our church bulletin a few weeks ago. Here's a link to it, if you are interested.

Thanks for continuing to pray for us!

Love, Juli

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

Flying Colors

Surgery yesterday went great, no surprises, which is just the way we like 'em. Bobby came through with flying colors, a model patient. He has an incision on the neck, and another on his right hip, where they took a small piece of bone to fashion a replacement disc.  The C4-C5 vertebrae were repositioned, and the whole thing secured with a titanium plate.  No neck brace, which was a nice surprise. Apparently, Dr Fell is "progressive" and doesn't require a brace.  After just 27 hours, we are back at home. Now, to just keep him from overdoing the exercise regimen.  They prescribed two 5 minute walks a day, adding just one minute per day.  We've already been on a 15 minute walk since being home.  Of course, he's always had a habit of meeting or exceeding expectations, so why start now?

Here's a before/after pic of Bobby. He just loves it when I do this. By the way, he said the food was actually pretty good. And overall, the Tulsa Spine and Specialty Hospital was awesome.  We are thankful for the great care we received.

On the way to dinner the night before surgery, we happened to catch this interesting sunset. To me, it's a picture of God's glory -  always around us, but we seem to see it most clearly when it shines in sharp contrast to the dark clouds of apprehension and uncertainty. What a nice reminder.

Thanks again for following and praying. We continue to consider ourselves blessed with the love and support of great friends and family.

Much love,
Juli

Where we went from there

Sorry to have left anyone hanging after that last post. We did have the CT Scans and the followup appointment with Dr Keller.  Looks like the break was a good idea.  The tumors are mostly stable, so we are pleased with that.  The ones in the lungs are very stable, the largest just 1cm.  The tumors in the adrenal gland and kidney are the most troublesome, they are 2.5-3.5 cm. Even though there's no sign of either adrenal insufficiency or kidney failure, neither would be a good thing.  So we decided to do the following:

1. Started Votrient, one of the VEGF Targeted Therapy drugs, on  March 12. Its in a pill form, so he won't have to do IVs which is nice. So far the side effects have been what we expected - fatigue, queasiness, the usually crudiness.

2. We met with Dr Jason Cook, our urologist, to discuss the options for surgery, specifically a partial nephrectomy, and most likely adrenalectomy.  He said while he could do the surgery, he wouldn't recommend it, based on quality of life issues. He suggested we make an appointment at MD Anderson for them to take a look. In his words, "most people don't live this long with your diagnosis," so he thought they might have seen a case like ours. I guess that was good news... We haven't made the appointment yet because of #3.

3. We mentioned to Dr Keller that Bobby had noticed a new pain in his neck and some headaches, so he ordered a neck MRI to make sure there was no cancer in the bones.  The head, chest and abdomen have all been checked, might as well be thorough and check the neck.  Well, surprisingly (or maybe we shouldn't be surprised anymore when things come out of left field) he has a dislocated vertebrae and slipped disk causing "severe cord compression at C4-C5" Basically, the spinal cord is being pinched. Remarkably, the pain is manageable, he's just trying not to put added stress by heavy lifting or strenuous exercise.  Oh, and a car accident or falling off his bike would be very bad. 

So neck surgery is next on tap, currently scheduled for Tuesday, April 23rd. Dr Fell, the neurosurgeon will do the surgery.  He'll be in the hospital overnight, then home recuperating.  We had to discontinue the Votrient for two weeks before & two weeks after surgery due to bleeding risk. The silver lining is that the timing has been good. We had a trip to Hilton Head, SC scheduled and after the MRI thought we'd have to cancel, but Dr Fell gave us the green light, and we were able to get away last week for a relaxing, fun time with some great friends. 

Sorry to be so sporadic with the updates, we truly appreciate you for checking up on us and praying for us as we journey on down this winding road.

Love, Juli