Rnd 1: Wk 2

This week has actually been relatively calm, though yesterday marked the one month anniversary of my first appointment with my oncologist.  On Sunday, though, my mouth began to ache, not like a burn or a sore but like a muscle in the way it was just a diffuse ache on the entire inside of my mouth. I used the salt and baking soda water mix like a mad man, but it just wasn’t helping.  On Monday, I blew through like six or eight ice pops just for some relief.  The other side has been things tasting muted or overly sweet.  I have learned that eating something on the sweet side before eating something savory helps the flavors of the savory come back through.  Foods that include the contrast naturally (like sweet barbecue sauce on meat) have been great.  But it all still occasionally tastes like I’m sucking on a penny.

You can see the PowerPort as well as the
catheter that goes into my vein.

The port is still a very strange, foreign thing under my skin.  It's healed nicely, so for the most part, I forget I even have it.  But then there are the other times when I forget it's there and my hand brushes it or someone hugs me on that side, and it gives a twinge that reminds me that it's there.  What's worse is you can see the catheter that goes up into my jugular vein, which has been the cause of many cringes from Rebekah in looking at.  I actually now have to carry a card that says I have it.  I know I was handed stuff the day of the surgery, but I didn't realize what it was until late last week, but it's in case I'm ever being worked on (which will hopefully NOT happen) so they know what it is.  It's also in case we fly so they know what the foreign body is under my skin.

The follow-up appointment and blood draw was on Tuesday, 12/18.  We met with a PA (Lisa) because my doctor was declared sick and was going home.  A cancer center seems like the last place for a sick employee to ever be, even (especially?) if it is the specialist.  They have their own in-house lab, so they took my blood then sent me back to the waiting room where Rebekah and I waited just a little longer to be called back.

My weight is holding, which is great.  After the nurse took the usual vitals (my blood pressure was a bit high for me, but there’s a new level of anxiety at which I live), we met the other PA, Lisa, whom we hadn’t met before.  I started with my questions, which led to her reiterating for me that we truly caught this early and that it seems mostly contained to my right chest/arm area, and, yes, it is curable.  I was surprised that when we get it cleared up as confirmed by a PET scan after the last round, they actually declare it cured at that point, not just remission.  We'll have to monitor me for the rest of my life, but that first five years will be key.  Lisa brought up the PET scan, and I really wanted to see the images, but I decided that's something to ask of Dr. Barnett the next time I see him...I'm just really curious.  She told me that I need to talk to the doctor more specifically about the longterm considerations that the over expressed c-MYC oncogene might mean and how we might mitigate that, but she also assured me that it won't stop us from curing the lymphoma.

Overall, my health is holding well.  She did say that it's possible the hiccups were from the amount of steroids to stop the allergic reaction to the rituxan, but it may also have been from the steroids in general, in which case I may experience them again.  Great.  I guess we'll find out in a couple weeks as my next appointment is on January 2 for a blood draw with the next chemo round following immediately on January 3.  School returns on January 7, so I doubt I'll be starting the semester two, but we'll see.

"Magic Rx Mouthwash"

I did tell Lisa about my mouth issues, so she did call me out a prescription for something I'd seen
mentioned online: Magic Rx Mouthwash.  It's supposed to stop the reactions in the mouth and calm the soreness.  Of course, that was Tuesday, and King Soopers still hadn't called yesterday, Thursday, so I called them and they were clearly in a "Crap, we forgot to mix it!" mode.  It was ready last night, but I wasn't going to rush out to get it...they failed to get it to me when I was in the most discomfort.  Now it just feels like I ate something a little too hot.  Of course, as soon as I got it today and finished lunch, I did try it.  They aren't kidding: this stuff numbs your mouth!  Where was this with all my throat infections as a kid?  My goodness, my mouth is totally numb, and it will be very handy if/when it hurts again.

I didn't want to be eating my beard

Watching my beard barely reach a one-day growth after shaving on Sunday until this morning has been difficult because it shows my hair is not growing at its normal rate (I've been shaving daily since I was 12), so I'm assuming that it's a first sign that it's going to fall out sooner rather than later.  It's a fact that I'm trying to steel myself for, but I admit to the vanity of being the only man in my family over 40 (heck, over 30) with all his hair, so this really bothers me to think about.  Waking up in a pile of hair is the thing of nightmares, and there's a level of anxiety to the waiting for it.  Thank God for the kindness of nice and soft hats of various styles and colors I've been so generously given.  I did get tired of waiting for my beard to fall out and shaved it this morning as well as my face (I'm guessing for the last time until after treatment), but it's not quite so traumatizing since I've been shaving it all off every summer for the past several years.  Having beard whiskers fall off in my food wasn't appealing, so that's the other factor.  One small step at a time, I suppose.