round 3 -- here we come!

There hasn't been much to write about the last several days.  It took Andrew 12 days to recover from round 2B chemo -- a lot of sleeping, nausea, and general exhaustion.   Today was the first day he felt really, really good -- and so of course that means it must be time for more!  Ha!  We're back to Albany bright and early tomorrow morning to start round 3, A cycle.  It's terrible for him to just start feeling better, and get right back in it, but I feel it's best to just keep pushing forward -- get it over with as soon as possible (easy for me to say, I know). Hopefully, A cycle will be a bit more gentle with him.

Sorry to be so out of touch with everyone -- this month was the first time we were back on our own without all of the wonderful family help.  It was nice to be at home for awhile, just the 4 of us, but it's also been challenging -- I've been quite busy.  So I will try to return all my overdue phone calls this week!

xoxo
L

Happy Birthday!

Andrew turns 49 today -- to celebrate, he took a nap!

Blood Cells

I haven't posted in a few days as Andrew's been pretty sick from this round of chemo.  They told us that the B cycle is tough, but we thought they meant while you were getting it -- I guess they really mean "after"!  It was a much more imuno-suppresive round, so he's having some trouble getting his blood counts to rebound, which makes him feel generally terrible.  I gave him 6 daily injections of neupogen for the white blood cells, but the platelets and red blood cells were left to fend for themselves.  Apparently, this aggressive treatment just destroys the bone marrow (from whence all those important blood cells grow)!  He's had some bloody noses from low platelets but they seem to be abating now.  The red blood cells are another story ... he's still incredibly fatigued and can get very light headed if he's up for too long.  I'm going to give Dr. E. a call tomorrow to see if he needs some supplemental blood, though he seems to be rallying a bit.  It's supposed to be normal to feel awful as the blood counts bottom out around 7-14 days after treatment, so that's about where he is.  We're still new at this and aren't really sure what "normal" recovery is yet.   
I've been doing a lot of reading about this regimen in preparation for the possible stem cell transplant, and if it weren't so effective I'd be pretty scared. Many older patients aren't able to finish the course -- it's just too intense -- but it really has much better outcomes for patients if they can endure it.   Unfortunately the effects are cumulative as you continue, but Andrew is so strong and so determined -- he'll get through it. 

Aftershocks

We were back in Albany yesterday for a visit with Dr. E, and one final shot of intrathecal cytarabine (it's supposed to be given on day 7, but they let him go home for a few days instead of waiting around for it).  He was feeling pretty good yesterday, although his platelet count was low. The intrathecal chemo only took a few minutes, but he started feeling the effects pretty quickly on the way home.  He was headachy and exhausted and slept for the rest of the day.  Last night he went through the intense "dead cancer cell expulsion" (see previous posts ;), and today he's feeling pretty crappy.  It really is such a roller coaster -- he'll feel pretty good the day he's discharged, and then as his blood counts start to drop he feels worse and worse.  I've been giving him neupogen injections every night to help the blood counts rebound, but honestly I'm not helping the situation -- I haven't quite gotten the hang of pain-free injection yet.   After last night's injection Jack and Ewan were taking turns laying on the couch, squeezing their stomach fat for pretend "shots", and yelping as they heard their Dad do!

We have another visit with Dr. E on the 18th, and she'll admit him that day for round 3 -- A cycle.  

Happy New Year -- round 2 down!

In and out this time!  Or so it seemed -- Andrew was discharged today, with round 2 under his belt.  We're 1/4 of the way through the treatments -- or as Andrew said, "I have to do this s**t six more times?!  Anyway, everything went fairly well ... he got a new chemo drug this cycle called cytarabine which was pretty intense.  The drug gives flu-like side effects, so he felt absolutely awful for 2 days -- nauseous, chilled to the bone, no appetite, and he spiked a high fever.  They took a couple of blood cultures to check for pneumonia (!) or other infections, but thankfully they all came back negative -- the fever was just a side effect from the chemo.  So they let him come home -- hooray!  He's probably going to be feeling pretty lousy as his blood counts continue to bottom out.  We've been sent home with antivirals and several Neupogen injections to stimulate new white blood cells -- those should help his blood counts rebound, and get him ready for round three in a couple of weeks.  We have a visit with Dr. E on Wednesday morning for blood work and to schedule the next round.

I hope everyone had a wonderful New Year!  2011 was actually a really good year for us, right up until the last few months ... here's hoping for lots of good health and happiness in 2012!!

xo
L

Life in Albany

So here we are -- now at Albany Medical Center.  We met with our new doctor yesterday morning and Andrew was admitted last night.  Dr. E looks just like Lisa Loeb (for all you fellow Gen Xers), but she seems very thorough, so we're encouraged despite her youth and funky eyewear.  It's been stressful, starting with another new team, and they're still trying to gather info from all of our previous adventures. Don't get sick around the holidays -- it just complicates everything even more -- everyone is on vacation, no one knows where anything is ... Poor Dr. Liu doesn't even know yet that we're no longer in his care.  But we're in the hospital and Andrew has started the B cycle of his treatment, so everything seems to be on track as it should be.  At this point we're learning to go with the flow as much as possible.

 rock and roll 

The B cycle is more rituximab (wonder drug), methotrexate, and cytarabine -- some is IV, some is intrathecal.  This cycle is supposed to be very tough, but fortunately, Andrew is in much better shape than he was when he started the first cycle.  At WMC we were told that we would be there for 4-5 days, but AMC has told us 7 days.  The AMC pathologists will also be looking at the slides, so we'll now have 3 opinions on diagnosis, which I guess is a good thing.  Maybe one of them will be able to figure out the inscrutable McTiernan NHL.

Some good news .... the second bone marrow biopsy came back with "undetectable" levels.  It doesn't mean that there's absolutely no lymphoma present, but certainly a promising result after just one treatment!

I'll update more as we settle in here.  We hope everyone is having lovely holidays and staying happy and healthy!

xo
L

Guest Blogger: Andrew

Hi … this is the first time I read the blog … so many kind thoughts …. Thank you, it means a lot. I graduated from high school 30 years ago and to see so many familiar names from the past, wishing me and my family well was a lovely surprise. Brought me back to a time in the late 70's early 80's when it seemed so simple and ok. I guess that's why it's called home. Thanks NYC for the food, care and kind words. It's been a big help. And thanks to our friends in the Hudson Valley. The moment I got sick …. They made certain the fridge was full … the boys were cared for and the Christmas Season wasn't forgotten. Special love to Linda also. For me, it's a shadowy fog, and yet she's taken my hand and walked me through this. I hope everyone has a Merry Christmas and Happy Holiday Season.
Many Thanks,
Jay Andrew McTiernan

December 23, 2011 1:18 AM