Two Nuts in Houston

This trip has been very therapeutic and has given me much hope!

Here are the highlights...
Surprise! First class to Houston for Kim. I got to not only experience what it's like to sit on the other side of the curtain, but also enjoy a full lunch service with free drinks to boot! The reason for this is that I flew on a buddy pass with my United flight attendant friend, Jeryl.

My Aunt Jan and Uncle Jim picked us up at the airport and surprised me with a mini family reunion at my cousin Amanda's house in Montgomery (about an hour north of Houston). We sat poolside and caught up on the last 5-10 years of each other's lives. I even got to feed carrots to her two horses. I met Amanda's daughter, Kiley (3) and my cousin Jennifer's daughter Lauren (16) and son Kayden (2 1/2). Even my cousin Sean (36) from Austin was there. We enjoyed the afternoon and topped it off with a wonderful steak dinner cooked by Amanda's husband, Jason. We finally arrived at our hotel around 10 p.m.

Our day began with a 6 a.m. wake-up call for a 6:30 appointment at MD Anderson. The hospital is an incredible cancer research facility. It consists of 15-20 buildings, connected by indoor walkways. You shuttle on golf carts from building to building for various appointments -- very cool!
The first doctor I saw was Dr. Dan Gombos, Associate Professor of Opthamology at MD Anderson. He was very knowledgeable on VHL and left me with several options of hope. 1) Direct or proton beam radiation (which, even if it works, will cause more vision loss), 2) Avastin (a drug given by IV injection into your eyeball - ouch! - which will increase the eye pressure & possibly the macular hole size), and the most promising-sounding is PDT (photodynamic therapy - direct laser following IV injections that that will cause the laser to only affect the tumors and not cause damage to the rest of the eye). Lastly is the Sutent chemo drug, which will not cause my eye to get worse, but may or may not help it get better. Some of the treatments he recommended were "shot down" by the doctors at NIH. Yet he felt they may be worth a try - who knows? Just because it hasn't worked on other VHL patients doesn't mean I would have the same outcome. I left a message for Dr. Meyerle at NIH to discuss her opinions and any research she had regarding treatment options. Luckily, most of my testing reports and discs were sufficient enough for the doctor. I only needed some pictures taken of the eye, an ultrasound to measure the lesions, and he recommended another scan to confirm the macular hole (which it did). This Dr. appointment was encouraging as he felt I would be a good candidate for the Sutent (chemo) trial.

Now it was 1 p.m. and we were off to see Dr. Eric Jonasch - he is the renal oncologist (kidney/VHL dr.). He also has a special interest in VHL - he considers it his baby. He wrote the Sutent protocol and found me to be a perfect candidate. To date, he has had 15 patients with VHL on the drug. Two had stopped taking it due to severe side effects. Two had increased growth of tumors and therefore went off chemo. The other eleven patients have had promising results. Three of them have had eye lesions - if they haven't shrunk, they have remained stable. He has even seen shrinkage of not only kidney tumors, but also pancreatic and kidney cysts. No one has ever bled on this drug & many have had brain or spinal lesions similar to mine. What a relief! I feel this drug holds a lot of promise for people with VHL. If not for the eye tumor getting smaller, it may have a positive effect on my other tumors/cysts. I am now going to research the options I have been given, as well as pros & cons, etc... Lots of homework!!! The soonest he could start me on the Sutent is mid-June, unless I cancel our cruise, because he would need to see me during that time. This is probably best anyway, because I don't want to be out of the country and on a cruise ship feeling sick.

All day we never had a break for breakfast or lunch, and only snacked on Cheese-its and candy. It's a good thing I travel with a bag of gum, skittles, sprees, etc. at all times! We became so slap-happy, that we were caught taking a picture with a blown-up hospital glove by an entourage of doctors. After returning from MD Anderson around 5 p.m., we changed into swimwear and went to sit at the Jacuzzi to discuss the day. What a different & positive feeling it was after having been rejected from the Sutent trial at NIH & knowing that these people have much more experience with the drug. Jeryl and I wanted to go out and celebrate & SURPRISE!, her cell phone rang. It was her sister-in-law, Lydia, who lives in downtown Houston. She wanted to take us out to celebrate Jeryl's birthday and my good news. A few hours later, we were dining at a French brasserie, Max & Julie's. It was a very delicious and upscale urban restaurant. Sorry, Nancy! You will have to join me next time.

We got up Thursday morning after sleeping in until 8 a.m. After sitting in the shade by the pool for about an hour and starting to write the blog, we were picked up at noon by our new cabdriver friend, Mike. He was so sweet. He heard that we ate a lot of snacks the day before and brought us a bag of mini Snickers for our ride home. We have to save his business card for future trips. We nicknamed him "Mike Candy" instead of Mike Cabbie.

Once again, it was first class on our return. Much thanks to all our friends and family that helped with our children while we were out of town and made this all happen.

What's next? First, I will do my research and check out my options. I will continue to see if there are any major institutions studying my type of eye problems. Perhaps there will be one in Hawaii or San Diego or some other tropical location. I could really get used to traveling first class on the buddy pass system. Thank you again, Jeryl, and Happy Birthday!