March 21, 2011

  • Round 3, Myrtle the backpack, and other random thoughts

    Posted by Stephanie  10:30 CST  from the apartment  Houston, TX

    I've had several people contact me, anxious to know about the appointment last week with Dr. Benjamin.  It's been soooo crazy non-stop since that appointment last week, and this is the first chance I've had to sit down and compose a post.  Here's the scoop.

    The scans from Monday's appointment showed that the lymph node and lung nodule are 'stable' (a.k.a. the same size).  Dr. B theorizes that since my last scan was at the beginning of January, but I didn't start chemo till close to the end of that month, that those spots probably grew in size, but are now turning the corner and starting to respond to the treatment.  Therefore, they appear the same size on both sets of scans.  No way to know that for sure, since we don't have any proof of what happened between the two sets of scans, but either way Dr. B is pleased because there's no growth.  He thinks we may see more shrinkage of the spots as we go through the next couple of rounds.  Not the greatest news, but not bad news either.  I'll take it.

    The rest of the appointment was spent discussing my C02 issue.  While it's not as bad as it was on high-dose, inpatient Ifosfamide, it's headed in that direction, and my medical team is working to keep me from having to stop treatment because of it like we had to in the past.  It's under control so far thanks to massive amounts of sodium acetate in my fluids, plus the extra doses occasionally, and I've only had to take oral soda bicarb tablets when I've been off the fluids.  My favorite Dr. B quote from Monday's appointment was "Your kidneys have holes in them.  They're like swiss cheese.".  Perfect.  I have a little "chat" with my kidneys everyday, just asking them to hold out long enough to kick this for good.

    I flew home Tuesday afternoon for a quick, three day trip.  What a whirlwind.  Hours upon hours spent compiling tax information for both my medical deductions and my Arbonne business from an endless number of sources around the house and online.  Didn't get much sleep, but I did get the chance to see a couple of people, sleep in my own bed, and spend some much needed time snuggling with the cat.  Any visit home, no matter how short, is good for the soul, and I feel boosted coming back here and ready to tackle a few more weeks.

    I arrived back in Houston Friday evening, and had labs Saturday morning to see if I was ready for chemo Sunday morning.  Bloodwork looked good for the most part, but my hemoglobin had slightly dropped.  At 8.7, it was still far above where they would normally transfuse, but since it hasn't been rebounding after each round like the rest of my counts, Dr. Benjamin wanted me to get some blood so that when it continued dropping during this round, I didn't get into trouble.  The last week or so, I've been symptomatic--tachycardic (fast heart rate) with very little exertion, short of breath, and even my resting heart rate is around 94-96.  So, mom and I spent most of Saturday (five hours) at the hospital Saturday getting two units of blood.  The good news is that my hemoglobin today was 11.6, which has really made a difference in how I feel.

    Got hooked up for round three of chemo this morning.  My first two rounds have been evening appointments, so we'll see how I enjoy a morning appointment.  I think it'll have it's pros and cons.  Pros: won't have to come to the hospital twice a day on bloodwork days and can get it all done at once; will have evenings free to have dinner with Joe and Sarah or attend Arbonne trainings down here.  Cons: that backpack is heavy ALL day (when it was at night, I'd sleep and the backpack would be so much lighter when I woke up); naptime from the phenergan wiped out about 4 hours of my morning/afternoon and I was pretty groggy the rest of the day.  So far, I'm feeling fine.  Oh, and my backpack has been given a name.  Ang and I discussed some when I was here, but it was finally settled upon later by my friend Jodi that my backpack should be called 'Myrtle'.  I love it.  Everyone also thinks it needs some bling.  I have a big yellow pin that says "Cancer Sucks" on there, but I've got to look for some other stuff.  Like streamers.  :)

    Mom and I took a walk late this afternoon, like we usually do.  It was a beautiful day, with lots of people out and about around the apartment complex.  I had a moment on that walk (and thankfully these moments are now few and far between) where mom and I passed a young couple walking with a dog and a stroller with their baby.  The first thing to pop into my head was, "That's supposed to be me.  That's where I'M supposed to be in life right now."  It hit me pretty hard just for a minute, and then I pushed it out of my head.  I try really hard not to get bogged down by stuff like that.    I understand that my life for the last few years, and right now, needs to be about me getting well.  It hasn't followed the path I had planned out.  That was really hard for me to accept when I was sick the first time, but by now, I accept that I have to go with the flow.  And that's okay, because it's helped shaped me into who I am.  I know once this is all behind me, I'll be a stronger, better person because of this, so I don't let myself get too upset by what we don't have yet.  "Woe is me" doesn't get me anywhere.  Sammy and I have talked many a time about how by this point, after five years, we almost feel 'numb' by this point.  It sucks to get the news that I have to do this again, but it doesn't phase us much.  We just go into fight mode, buckle down, and do what needs to be done.  We compartmentalize things, to a certain point, because if we allowed ourselves to really sink into the overwhelming thought and feelings of all this, we'd probably go nuts.  :)  That's not to say I never get upset or am never affected by things--I just try not to dwell on it and make the choice to be positive instead.  It's a good thing.

    Alright, time for bed.  Gotta be up early for labs again, then chemo bag changeout.  Nighty night all.

    -Steph