January 27, 2011

  • And the winner is....

    Posted by Stephanie  9:30pm CST  from the Rawleys'  Pearland, TX

    Yesterday was a looong day at the hospital.  Labs, then a consultation for CVC line placement--that was a hoot.  We went into a room with a nurse, who usually goes on and on about what the CVC line placement entails, and then you have to watch a video, blah blah blah.  This time, though, the nurse looked at the paperwork, then at us and said, "You've done this before?"  Yes, many times.  "Do you want to watch the video?"  Not really.  "Any questions?"  Nope.  And that was that.  Now that's my kind of appointment.  :)

    After that we headed up to the sarcoma center to find out the long-awaited verdict on chemo.  Once Dr. Benjamin finally came into the exam room, he wasted no time filling us in on the plan.  The winner is.....(drum roll please)....Ifosfamide!  Sammy totally called it, and I figured that's what he'd do too, but I was still holding out hope for the lesser of the two evils.  Dr. Benjamin had said during my last checkup that he needed to confer with my thoracic surgeon, Dr. Swisher, and apparently he said it would be a lot easier to get at the lymph node surgically if it were smaller.  That pretty much finalized the decision.

    Dr. Benny went on to remind us that this time he planned to give me the Ifex as an outpatient at a much slower rate over a long period of time.  I envisioned "longer period of time" to mean three or four days, but oh no, he informed us that it would be infused continuously over a period of two weeks.  TWO WEEKS.  Yeesh.  I'll have a chemo "backpack" with a portable pump and a bag of Ifex mixed with Mesna (medication designed to protect my bladder) that I'll have to get changed out once a day at the hospital.  After two weeks on, I'd have a week off (or two, if my body needed the extra recovery time) and then we'd start over again.  As for side effects, they should obviously be less severe than when I did high-dose Ifosfamide as an inpatient.  According to both Dr. B and my nurse, Mara, the most common things I'll experience are quite a bit of fatigue, and the potential for 'neurotoxicity' (a.k.a. mental loopiness).  The cause for the mental instabilities (which could range from nightmares to full blown hallucinations, hooray) is a drop in the brain's Albumin level.  I have experienced some loopy moments on Ifex in years past (anyone remember the Horseradish Trail incident?), and heard some great stories from nurses about other people as well.  It was easily resolved for me at the time by hanging a bag of Albumin with my next dose of chemo, but they won't be giving it to me automatically with this outpatient regiment.  If I do experience any issues, they can hook up some Albumin on the second lumen of my CVC line, or give it to me orally, but he doesn't want to give it to me unless absolutely necessary.  The less medications the better.  I shouldn't experience too much nausea and vomiting, which to me is the most thrilling news of the day.  There's not much worse than hurling your guts out day in and day out.  My counts will drop after each round, but Dr. Benjamin doesn't anticipate it'll be as bad as it has been in the past.  Oh, and I'll lose my hair again.  Good thing I have a nicely shaped head.  I think I make a pretty hot bald chic, if I do say so myself.  :)

    We'll start with bloodwork three times a week to monitor electrolyte levels.  Ifex has caused me major issues in the past where my kidneys couldn't hold on to bicarb (hence the 48 sodium bicarbonate by mouth I was on back in the day).  If that starts to be an issue, we'll go to daily labs, and I may need to get an occasional bag of electrolyte infused fluids while at the hospital getting my bag changed out.

    Because of the chance for neurotoxicity, I'm not supposed to drive during the two weeks I'm on chemo, and someone has to be with me at all times to watch for changes in my mental state.  I'm a little freaked out by that (am I going to mistake Joe and Sarah's 8-month old daughter for a football or something?), but hopefully it's one of those things that they have to tell me about but won't really happen.

    To just about every question I asked Dr. Benjamin ("How many rounds of chemo will you do?", "When will surgery be?", "Is this something I might be able to do at home?"), I got the same response: "We'll just have to wait and see how this first round goes".  That answer is a little frustrating, but I can't blame him--this is just as much unchartered territory for him as it is for me, seeing as how I don't ever follow the typical path for this disease.

    I think that's about the extent of what we learned at my appointment--I'm sure I'm missing something, but you get the idea.  I had my CVC line put in this morning.  It's sub-clavian on the left side, just like it has been the last two times.  I don't really mind the CVC line (although it's mighty sore right now, since when they numb you for the insertion, they insert the needle INTO your clavicle bone.  Ow.), but it makes things like showering a huge pain.  This morning I stood in the shower until my fingers pruned up, just enjoying what would be my last shower without that line in.  From now on, anytime I want to shower, I'll have to wrap that area in saran wrap and water proof tape.  I'll also have the backpack to contend with, but I'm told I can just set it outside the shower.  It'll take some getting used to, that's for sure.

    Chemo starts Friday afternoon.  Tomorrow, though, we have nothing, and after two days of many hours at the hospital, Sammy and I are planning on being slugs.  It's gonna be great.  I'm battling a cold (or the flu, even, since I've had chills, body aches and a low grade fever) that I caught sometime in Vegas last week, and I'm hoping it gets it's sorry tail out of here so that I can have at least one day of feeling good before I start on something that will make me feel bad.

    I'm headed to bed.  I had to resort to pulling out a vicodin tonight for my shoulder--the tylenol just wasn't cutting it--so hopefully that helps me sleep better than I have been lately.  We should be able to get into a really regular posting routine now that things are settling down into a pattern, and I look forward to being able to write more than just the medical facts.  There's a lot of thoughts and feelings running around in this crazy head of mine!  Goodnight folks.

    -Steph