May 1, 2009

• Kicked to the curb….in a good way!

  Posted by Stephanie 10:00pm CST from the apartment Houston, TX

  I’m so happy to be able to start this post by saying, I’M A FREE WOMAN!! I’m done, treatment’s over, I got kicked to the curb…….however you want to put it, I got the green light this afternoon from Dr. Benjamin to be finished with treatment. What great news—time to rejoice!!

  Let me back up and go through the day. It didn’t look at first as though we’d be celebrating. Dr. Benjamin came into my exam room this afternoon and, after hugging me and noting my substantial puffiness, launched into a spiel about the “couple of options” we had going forward. One of the options was to continue chemo like we were doing and hope the side effects didn’t get worse, and the other involved stopping treatment for a month to let the steroid side effects subside before restarting again.…it took a minute or so for my brain to catch up with his train of thought, at which point, I said, “Hold on, are you saying we’re for sure doing more chemo?”. Oh noes! What happened to possibly being done?! Dr. Benny went on to explain that he thought we should probably give my body a month off to recover from what the steroids were doing (he thinks that everything I’m experiencing aside from the abdominal pain—the puffiness, the tenderness, the fat face, etc.—is all caused by the steroids) and then do at least another couple of rounds. When I asked what his reason was for doing more, he said that if the treatment was keeping my disease at bay, and I was able to tolerate it, then it made sense to continue with it to ensure a better long-term success rate. In fact, he said that if I wasn’t having any side effects at all, and wasn’t taking the steroids, he would without a doubt continue to do more chemo. However, as I picked his brain about what additional chemo would do and why I should have it, he actually started to talk himself out of his initial decision. After reviewing on the spot the total amount of chemo I’ve had in the last ten months, and mulling over what would be more harmful to me—more chemo or continued steroid use—he decided that there wasn’t really a need to do more, and that he could confidently say I could be done with treatment. Although he said he always likes to do as much chemo as possible, he admitted that there’s no way to know whether another two or four or six rounds would do any more good than the six of methotrexate I’ve already had (and the six rounds of other chemo before that). Cancer treatment, especially in a rare, peculiar case like mine, is not an exact science, and despite having scans and bloodwork to study, there’s never a guaranteed way to know what the perfect call is. I was so taken aback by the sudden switch in his decision mid-consultation that I actually got nervous and started backpedaling, saying, “Are you sure? Don’t let something we said change your mind—I’ll do whatever I need to do, whatever’s best for me, even if that means sucking it up and doing more chemo. I mean, the side effects are a pain, but they’re tolerable….” . I rambled on and on, but he assured me over and over again in every way possible that he was certain now would be as good a time as any to be done, and that based on the surgery necrosis rate and the tumor’s response to chemo, he felt confident we’d done all we needed to do. I’m sure I sounded like a broken record, but I wanted to make sure he was stopping because he felt like it was the right thing to do, not because he felt like he had to due to the steroid side effects and issues. He said that while he did have to take those into account (he’s very concerned about long-term negative effects from continued steroid use), that wasn’t the deciding factor. Basically (as if you couldn’t tell yet), mom and I spent 15 minutes going back and forth with him, “Are you sure?” , “Yes, I’m sure.” , “No really, Dr. Benjamin, are you sure?” , “Yes, I’m sure” .

  The whole first half of my appointment with him was enough to give anyone a headache, it jumped around so much (and I’m sure I’ve forgotten something), but overall it was obviously a very good visit. He said the scans from last night looked great, and took a minute to explain the vascular malformation found on the last set of scans, seeing as how I hadn’t seen him since the reason for that had been discovered. It’s exactly as his e-mail response a few weeks ago said—their records show that the I.V. contrast used in every scan was injected from the right side, except the one that showed up abnormal—it came from the left. I asked why that would make a difference, and he explained that because the spot was on the left, the contrast dye hit it before it had the chance to enter a major vein and circulate through, so what they saw on the scan was actually a large amount of the dye moving through that tissue. The scan from last night had the injection of contrast from the right, and once again, it appeared dark gray and normal. So yeah, it was really some fluke and nothing to worry about. Yay. Anyway, the rest of my time with him this afternoon centered around what happens next. Obviously I’m done with chemo. He wants to see me again for scans and a checkup down in Houston in two months. No need for bloodwork or anything between now and then—I’m just to keep taking my sodium bicarbonate tablets and potassium as I have been to keep those levels steady. I asked when my CVC line could come out, and he said they’d give me an order to take down to the Infusion Therapy center right away and have it pulled. We asked about my odds for this returning, and he again said he’s very optimistic that we’ve done enough to keep me cancer free for a looong time. Now it’s my job to keep myself as healthy as possible.

  After we had finished bombarding him with all our questions, he asked to see how much hair I had (quite a bit, I must say) and then proceeded to, as he says, “pet my head”. Then one more hug before he took off, and mom and I were left to try and absorb everything that had just happened. I must admit, it was kinda anti-climactic. I mean, I knew there wouldn’t be some big definitive, “YOU”RE DONE!” moment with balloons and confetti and crying, joyous people, but even knowing that, I felt a little lost as I stood in the exam room. It’s like, “What do I do know?”. Technically, I know what to do—pack up, head home, try to get back to some semblance of normal life, but it’s just not that simple. For the past 10 months, and most of the last three and a half years, being a full-time cancer patient is all I’ve done. It’s what becomes your norm, and you get so comfortable doing that that it’s the return to regular life that seems scary and difficult and overwhelming. My thoughts about it are numerous and complicated and I’m definitely too tired to get into them tonight, but I’m sure many of my posts for the next several months will deal largely with those issues now that the bulk of the physical battle is over.

  So, here I sit in the apartment, CVC line out (I can shower like a normal human being again….well, starting tomorrow anyway….it’s the little things like that that are so exciting) and once again done with treatment. I’m ecstatic, and thankful, and looking forward to coming home once and for all. Mom and I had a huge tex-mex dinner to celebrate, and I’m still full three hours later. It’ll take a couple of days for us to clean and pack up the apartment, plus there’s a couple of restaurants and places we want to visit before we head home, but it’s looking right now like we’ll leave first thing on Sunday morning for the drive home. Seems crazy, since we just got back down here! Anyway, enough of my rambling—I’m tired and should get some sleep. It’s been a draining day. Goodnight all.

  –Steph

  • 12:43 am
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