Tuesday, April 19, 2011

Fiesta Fiesta

I’ve gotten into more of a routine down here in Houston and have begun to understand, appreciate and anticipate my side effects. It does not make the side effects any more tolerable, but there is some comfort in being able to manage them. I now know that at 3:30 pm I will hit a major wall. Now we just factor that into the day. It’s not even that I need to nap. Even though we’re so close to Mexico, I still have not mastered the siesta. It’s just that my body needs to be horizontal for a little while and I’ve learned to oblige. The wall has less give than the one created by any other drugs I have been on. The fatigue is pretty debilitating.

My appetite still isn’t regular if it exists at all. I am continuing the routine of smaller meals and eating when I’m able to. I wish I could enjoy more of the food here, but small samplings are still satisfying. If I put too much food in, or even have too much on the plate in front of me, I’ll get nauseous or if I do get it down, it usually comes right back out after a couple hours of super fun cramping. Healthy snacks and smoothies throughout the day are much easier for me to digest.

I have back and hip aches still, but nothing that has kept me from remaining active and as “normal” as possible. When I can work it out to practice with my yoga DVD it certainly helps. I do greatly miss the walks I am used to taking at home, whether in the woods, at the Tariffville Park, or around the residential cul-de-sacs. But for now I’m making the Long John Silver’s and Five Guys Burger and Fries parking lots work for me.

Despite the warnings that they would come, I’ve had no mouth sores at all, just major dry mouth and thirst. I’ve taken the advice of my nurse of a baking soda and water rinse a few times a day and believe that that’s helped to keep things normalized. I am constantly drinking something and this means I pee about every hour. I’m taking a thorough tour of all the restrooms Houston has to offer.

I’ve managed to escape any crazy, unexpected side effects and somehow my blood counts haven’t plummeted as low as expected either. This has meant no need for any transfusions or Neupogen shots. My nurse was very surprised to read these results and had to ask to be certain that I am taking the full pill dosage. I think I’m skewing their drug research data. This makes me pleased and very proud that my bone marrow is still able to recover on its own after all of the treatments its been subjected to.

That’s not to say I haven’t dipped low, but rather that I have been able to bounce back. My platelets are holding steady around 47 by yesterday’s check. However, like last week, my neutrophils dropped over the weekend to .98. That level is under the required 1.0 and because it is on the decline, it was decided to stop the pills again until at least Thursday to give myself a little time to build back my immunity and strength.

This was welcome news as it makes me woozy for a little while after taking the pills and I have to fast before and after. It’s not super fun, but I’m getting them down without a problem. My body could use a break after taking both the RAD001 and LBH589 at once on both Friday and Sunday per my schedule.

Plus, I have annoying cold/cough/allergy jazz going on so I think that factored into pulling me off treatment for a couple days. It started with a terrible sore throat Thursday then moved to cough and now a lot of nose blowing. A chest x-ray yesterday revealed no pneumonia or anything of concern. They started me on Levaquin antibiotic to kill anything that may be turning into a bacterial infection. Again, it’s no biggie, just annoying more than anything. The cold symptoms add to the fatigue caused by treatment and anemia.

But all of that is depressing. Onto non-medical news: Craig and I were able to take a short getaway to San Antonio this past weekend (a 3-and-a-half-hour drive) and my parents flew into Houston last night. These are both things that made me very happy.

San Antonio was absolutely beautiful. Craig and I wamted to explore some more of the great state that is Texas. We had heard from so many people that the River Walk was a must see and it truly was right up our alley. The downtown is built up all along the river with restaurants, bars, and shops along the stoned sidewalks and theatrical bridges and tumbling waterfalls. It was the perfect pace with lots of places to relax and enjoy a little escape.

Unbeknown to us before we booked the rental car and hotel was that this past weekend was also the culmination of the city’s biggest event of the year: Fiesta 2011. For 10 days the city parties it up with carnivals, parades, outdoor markets, fairs and guacamole galore. Saturday night included the Fiesta Flambeau parade with illuminated and animated floats and vibrant marching bands and dance troupes. The streets were lined with tens of thousands of people. I had to call it a night at 10pm, but even at that time, the parade was still in full swing. We caught a huge, huge outdoor festival with Mexican crafts, goods and food. San Antonians know how to have a good time.

My parents are now settled into their apartment in our same complex and we’re eager to introduce them to our home away from home. Fajitas are on the menu for tonight. If all continues to be stable at my next bloodwork check on Thursday, we may do a beach trip to Gavelston. We shall see. I can’t plan more than a day in advance, but I’m getting to be much better about accepting that. My body doesn’t leave me much of a choice. I’m learning to embrace change and uncertainty, learning to take things one day at a time and not be so hard on myself.

Sure, I don’t feel stellar by any definition, but how can I complain? Right now I am on a lounge chair by the pool under the shade of a palm tree in 90-degree heat. My mom is belly up on a lounge chair to my left reading US Weekly. My husband is belly down on a lounge chair to my right listening to TED talks. My dad is in the apartment just a few yards away catching some zzzzzs. Bob Marley is playing from my MacBook speakers.


  1. If you make it down to Galveston, Gaido's Seafood Restaurant has been around since 1911. They aren't cheap; however, they have a more casual restaurant called Casey's that is connected to them - the food comes out of the same kitchen.

    You have been in my thoughts and prayers.

  2. Gaido's or Casey's for sure, or Mario's for Italian. So glad you're enjoying the weather, and that you're taking it a day at a time, as it comes. Soak up the sun & be good to yourself. You look beautiful in the photos from San Antonio; if I didn't know, I'd never suspect you weren't 100% healthy.

  3. Yes! I forgot about Mario's! Fabulous place.