April 14, 2009

• The chemo waiting game

  Posted by Stephanie 2:30pm CST from the apartment Houston, TX

  I know it’s been a long time since I’ve posted—I’m always super swamped when I’m home for a few days, and then Sammy came back down with me for his spring break, and we wanted a few days of just being together and hanging out, so posting went by the wayside. But, I’m back now, with lots o’ updates.

  The visit home, though short, was good. I had the chipped filling fixed, got to go to church on Palm Sunday, had a three hour breakfast session with Reba, and Sammy and I got a lot of cleaning done around the house. Oh, and got tax stuff taken care of also. I’m so thankful we have an accountant to help with all that—the medical deductions and expenses make it way too confusing to try to take on ourselves.

  Sammy and I flew back on Wednesday morning (mom stayed home) and spent most of the next couple days holed up in the apartment because he wasn’t feeling well. He started feeling crummy on Tuesday, and though we hoped it was just sinus issues and some aches and pains from being worn out and overworked (“hitting the wall”, Sammy calls it), it was obvious by Wednesday that he was legitimately sick with something. Thankfully, staying hydrated and pounding down boatloads of vitamin C and wellness formula made quick work of it, and by Friday he was feeling much better (and could actually taste food again!). It was kind off odd, being down here and me needing to take care of him—usually it’s the other way around.

  We did have to venture to the hospital Thursday for an appointment at the sarcoma center. Dr. Benjamin is out of town, but I saw his physician’s assistant (PA), Kathy. It was basically just to make sure I wasn’t having any major problems, and to get the next round of chemo on the schedule. I did tell her that in the last couple of weeks, the steroids have become less effective—though they still eliminate the abdominal pain and tenderness, they’ve quit helping with the swelling and inflammation. In addition, I’ve started to get the puffy face that often comes with taking steroids. She told me to keep an eye on things and let her know if it continued to get worse, but that the real issue we had to deal with were my counts. What?! My counts? Methotrexate has never had an impact on my counts—they’ve stayed up and never dropped at any point during the first five rounds…..until now. Evidently receiving numerous rounds of MTX can eventually cause your immune system to start to stuffer, and that’s what is happening with me. My white count and hemoglobin were down from a couple of weeks ago, but still not too bad (3.5 on the WC, 11.7 on the HG), but my platelets had dropped from the mid 120’s two weeks ago all the way to 62 on Thursday. They need to be above 100 to get chemo, but Kathy thought they’d probably have rebounded by the time Sunday came, so she told me I’d need to have bloodwork about an hour before chemo was scheduled just to make sure they were where they needed to be. Though she obviously can’t speak for Dr. Benjamin, she thought the my counts taking a hit, combined with the continued side effect issues might persuade him to be done after this round. Gosh, I hope so. Anyway, with that, Sammy and I took off and headed back to the apartment.

  We definitely stuffed ourselves silly over the few days Sammy was here—tex-mex, Greek, seafood, not to mention some good old Easter candy. Saturday we made a trip to Galveston. Just like when Reba and I were there a few weeks ago, a lot of stores in the historic strand district were still boarded up, but there were a lot of construction crews busy redoing the inside and outside of buildings, and I think it’ll be really nice when things finally do re-open. There was a tape line that had been put up and labeled “Ike Water Line” on one of the buildings. Even though I knew the water had been high, it was still unbelievable actually seeing how high it was—the line was at least a foot above Sammy’s head! Crazy.

  Sunday we did bloodwork early, had breakfast out, then headed back to the hospital for chemo. We were armed with snacks, drinks and our computers to keep ourselves entertained during the six or seven hours we would be there. However, after signing in and waiting about a half hour, a nurse came out and told us that my platelets were only up to 86, and after speaking to the sarcoma center doc on call, I would not be getting chemo that day. Instead, they wanted to reschedule bloodwork and chemo for early the next morning, and hopefully my platelets would have hit the 100 mark. Certainly didn’t expect that. Now, don’t get me wrong, I was thankful to have Easter off. It meant that Sammy and I got to relax at the apartment and cook ham and all the fixins instead of spending most of our last day together with me feeling nauseous and crummy. But, I also just want to get this done and over with, and now I was having to wait. Boo.

  Sammy dropped me off at the hospital early yesterday morning on his way to return the rental car and catch his plane. Mom had spent a couple of days with Ang in North Carolina and was driving to Houston from there. She was due to arrive right around the time chemo started, so I wouldn’t have long at the hospital on my own. I had bloodwork, got some breakfast, and then checked in at the infusion center. This time I waited an hour before a nurse came out, and as soon as she said, “I’ve got to call the doctor about your counts”, I knew I was in trouble again. Sure enough, a few minutes later I learned that my platelets had not budged AT ALL. 86 on Sunday, 86 on Monday. Ugh. The doctor covering for Dr. Benjamin in the sarcoma center said she didn’t even think it was worth trying again the next day, so she wanted to wait until Wednesday (tomorrow) for another attempt. Unbelievable. Can’t we just get on with this already?! I would like to think that my platelets should certainly be up high enough tomorrow, but I’m really not confident about that at all. I know it’s not a big deal from a treatment standpoint for things to be postponed a few days, but it’s just frustrating.

  So, anyway, mom and I have a couple of days of nothing going on. We’ve been on a walk yesterday and today, plus a grocery run, but that’s about it. The weather is really beautiful—80 degrees and sunny, though it’s supposed to rain all through the weekend. I’m starting to get kind of antsy at the thought of possibly being done in a couple of weeks. I’d like to just cross my arms and blink, a la I Dream of Jeanie and fast forward to my next doctor’s appointment so I can find out for sure.

  I’m off for now. Talked to Sammy a few minutes ago—he was back to school today and is now headed home to start on some yard work. ‘Tis that time of year. I’m bummed I’m not there to help plant some flowers and enjoy spring (there’s not much “spring” down here in Houston!). I’ll let ya’ll know if chemo tomorrow is a go.

  --Steph

  • 5:06 pm
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