January 26, 2010

• The Lowdown

  Posted by Stephanie 10:50pm from the house

  Finally, I have a chance to get on here and elaborate a little about the trip to Texas—it’s been busy here at home since getting back late Friday night. Let’s get caught up.

  As I said in my brief previous post, all my scans last week were clean. They checked it all—chest, abdomen and pelvis. I know frequent CT scans are a necessary thing, but boy, do I hate the process. Mom and I were at the hospital four hours for a test that lasted ten minutes. It’s all the prep that takes so long—putting in an I.V. (my CVC line wasn’t the type that’s usable for that test), drinking the barium, and, lucky me, getting a bag o’ contrast shoved in the rear. The things I do for my health….

  I knew going in to Thursday’s appointment that if my scans were clean, Dr. Benjamin would most likely not do any more treatment, That’s not the optimal scenario, but my kidneys can’t handle Ifosfamide again, and putting me back on Gem/Tax like I was on before surgery wouldn’t do anything except keep things at bay and result in me taking chemo indefinitely. I must admit, I was especially nervous for this appointment. Obviously, I hoped for clean scans, but honestly, I thought it was more likely that something would be there. Given my history, it certainly could’ve been. When Dr. Benjamin came into the exam room, he asked how I was. I replied, “Great, since you haven’t done anything awful to me in awhile”. He laughed and said, “Good, because I’m not doing anything else,” and my stomach did flip-flops of joy. He sat down, and in typical Dr. Benny fashion, got straight to the point. He said he honestly didn’t know if doing nothing was the right decision. But, given our options, it was the best decision for right now. All we can do is hope that we got it all, and wait to find out for sure. Not exactly words that instill a ton of confidence, but it is my reality, at least for awhile.

  Dr. Benjamin had Kathy, his PA (physician’s assistant), Mara, his nurse, and two students in the room with him during my appointment (MD Anderson is a teaching hospital). He asked the students if either of them had ever felt or listened to the heartbeat of someone without a sternum. Of course they hadn’t (you don’t run across that very often, I’m guessing), so Dr. B asked if I would be okay with letting them poke and prod my chest hole for a minute. Sure, no problem. It’s always fun to watch facial expressions when doctors and nurses check it out for the first time—my heartbeat is uber-pronounced without bone in the way, and it’s apparently a really different experience listening to it. I also got to whip off my scarf and reveal my 3-months worth of hair growth. The look on Dr. Benjamin’s face was priceless—it was like a little boy getting a puppy on Christmas morning. He must’ve spent three straight minutes “petting” my head. It won’t be long until I can ditch the scarves, but it’s still a little too “buzz cut” for me to be comfortable with.

  I also saw the cardiologist Thursday, just for a routine followup. Everything checked out fine, and they decided it was time to take me off the heart medication. I was put on Coreg, a beta blocker, about a year and a half ago as a protective measure because of all the Adriamycin I had taken (and was still on at the time), and to help control the chemo-induced tachycardia I suffered from. It’s now been more than a year since I’ve had any Adriamycin, and I haven’t had any problems with rapid heartbeat either, so I’m thrilled they’re weening me off it. I’ll take any chance to get off medication I don’t really need—it’s better for my body that way.

  I had my CVC line pulled Thursday afternoon. Man, do I love not having to deal with that thing anymore. I want to shower five times a day, just because I can. Not having to wrap half my chest in saran wrap and waterproof tape is a joy beyond description. Really. It’s the little things. I sadly do still find myself going to my supply box for a heparin flush every night—partway there I stop and go, ‘oh wait, I don’t need that.’ It’ll take some getting used to. Anyway, after we left the hospital, mom and I headed straight to Hank’s for celebratory ice cream, plus had a great Greek dinner that night. We even got to see Joe and Sarah for breakfast Friday morning! Oh, and did I mention it was in the low 70’s and sunny while we were down there? Yeah, it didn’t suck. Coming back home to temperatures in the teens was not cool……well, actually it was quite cool, but you know what I mean.

  Technically, I’m now in remission for the fourth time. A four-time cancer survivor. Oof. Part of me wants to take off out the gate running and go wild making plans now that I’m done with treatment, but the other part of me knows better than to do that. Sammy and I certainly weren’t naïve the first time around—we knew it could come back—but we really did believe that I would be free and clear after my first bout with treatment years ago. Everything medically pointed to me being done and staying clear—the great response to chemo, the high necrosis rate of the tumor from my initial surgery—but here I am, three recurrences later. Don’t get me wrong—I’m thrilled to be done, and ready to move on with the life that’s been on pause for four years. But, I’m not in a position where I can relax yet, or make plans too far in the future, because there is a distinct possibility that this could come back, and soon. So when people come up to me and say things like, “You must be so glad this is all over!” or act like my remission is a forever done deal, I have mixed emotions. On one hand I’m jumping up and down with joy and rejoicing in my freedom from the chains of cancer treatment. On the other hand, while doing that, in the back of my head, I’m thinking it could come back at any moment, and all this would be temporary. In other words, I feel like I’m almost holding myself back from really celebrating, partly because I think that if I really let myself go, it’ll be harder to deal with emotionally if I have another recurrence. I feel like, at least until I have a good deal of time behind me, I have to be on red alert, ready for anything. I hate that, because I don’t want to live life (or really, not live life) waiting for the other shoe to drop. I’m trying very hard to stay on the positive side of things, and focus on all the great things this means for me—a chance for my body to heal, to get strong, to take care of itself, and time home with my family and friends. Those ARE things to celebrate.

  Alright, enough babbling from me for now. Lots more to say, but I’ve been working on this post for nearly three hours, and it’s time for bed. Adios for now.

  --Steph

  • 11:00 pm
  • 3 Comments