Life on hold.

Things had been going along quite smoothly during this recovery period -- we made a quick trip to AMC on Friday for a pop of intrathecal chemo. Andrew was a bit under the weather for 2 days after that, but today he felt really good, and looked really good.  We were due back at AMC today for the last 15 minute infusion of vincristine which officially ends round 3A -- unfortunately, his blood draw showed that the white count had fallen to really "critical" levels, so they were unable to administer the chemo.  :(

We're now due back on Thursday for another blood draw and possible transfusion.  We're disappointed -- he seemed to be doing really, really well this time -- we were hoping to get into the city to see some friends, he was going to try to work a few days this week, -- you know, have a life.  Instead he'll be holing up at home trying to not contract an infection of any sort.  But we're learning that this is the deal on this regimen -- very little opportunity to do anything but get your chemo, recover from your chemo, and get your chemo again. Lather, rinse, repeat.   Life really, truly is on hold until summer it seems, so we're telling ourselves to just get comfy and settle in.  So to all of our friends,  we miss you!  Don't forget us -- we'll be back!!! ;)


xo
L

Home

Andrew came home tonight.  We have to go back on Friday and then again on Tuesday for 2 more quick pops of chemo, and then cycle 3 will be complete.

He's feeling pretty good, and looking really good.  He had the vincristine today, and I could tell it was taking a  toll as we were driving home, but he managed to stay up for dinner before heading off to bed.  All in all a big improvement over the last 2 homecomings, so that's encouraging.  He'll probably feel pretty bad for the next week or so as the blood counts dive.  But ... another round down, another day closer to cancer-free.

Inspiration

I was having a moment of darkness, as I seem to do whenever Andrew goes back into the hospital.  I much prefer it when he's home, and I can stay busy taking care of him, the kids, dealing with insurance, etc .... just keep managing the situation.  But when he's at the hospital, it's all out of my control, and I start to feel a bit at sea (though I'm aware my "control" over the situation is all an illusion).   Anyway, I've learned that if you google too much, you can get really depressed.  And if you get good at adjusting your search terms, you can find even more information and it gets worse.  So I was really thankful when Chuck emailed a great interview with Jonathan Alter, a journalist who was diagnosed with Mantle Cell lymphoma in 2004, at 46.  Naturally, as a journalist he tried to uncover everything he could about his disease.  I was mostly struck by his take on statistics and how they can be very deceiving (can you believe they don't really have good data on overall survival for those diagnosed at mid-life vs. elderly?), but really everything he says just resonates.  His experience is so familiar to me, and it really calmed me down to know many others have shared the horrors and indignities of this disease, and lived to tell the tale.   So of course, I googled him some more and found this great piece from a few years back.

http://www.thedailybeast.com/newsweek/2007/04/08/my-life-with-cancer.html

and here is the more recent interview:

http://www.webmd.com/a-to-z-guides/exchange-tv-chronic-illness/transcript-surviving-cancer


*  sorry, looks like the first one won't link -- you'll have to copy and paste it into your browser window.

up and running

No sign of any blood clots so the chemo was resumed today, although they will continue to monitor his heart very carefully.  chemo can be very difficult on the heart, which is why they do a special scan (MUGA) before beginning any chemo treatment.  hopefully, all will be well now.

i'm back home with the boys today.   chuck, tommy and annie came up to be with andrew -- so that must've been funny -- hope the nurses didn't have to ask you all to settle down!  ;)

xo

Bump in the Road

The doctors halted Andrew's chemo yesterday after discovering a slight heart arrhythmia (irregular heartbeat).  They don't seem overly concerned, and listed about 50 different things that could be causing it -- from side effects of the chemo, to lack of sleep.  They've given him an EKG, echocardiogram, and CT scan of the heart to rule out blood clots.  We're waiting for the results now, and the attending doctor said if they scan shows no sign of a clot, they will resume the chemo tomorrow morning.

And Away We Go

Veritable lazy susan full of drugs and blood products!

Here we go

Andrew was admitted to Albany Med yesterday for Round 3, "A" cycle.  When we saw the doctor in the morning, she said his hemoglobin count was very low -- 7 (normal counts are 13-17).  We knew he was having a hard time rebounding from the B cycle, but he was feeling relatively good yesterday -- I can only imagine what the counts must have been last week when he felt terrible -- yikes!  Anyway, the doctor ordered 2 units of blood for him, and said that between cycles he would need to have his levels checked.  He received the blood last night, and today they gave him an additional 2 units, as well as starting the chemo drugs.  "A" cycle is a little crazy, in that he gets many, many things at once.  They start the day with a cup full of pills -- antivirals, benedryl, allopurinol (to protect the kidneys), anti-nausea drugs.  Then they start the blood products, IV rituxan (antibody wonder drug), then fluids, mesna (more kidney protection), and 2 chemo drugs, decadron and cyclophosphamide.  Phew.

We got to peek at notes in his chart yesterday -- it was a little disconcerting, reliving those early weeks, and reading about how dreadful and widespread his cancer was (plus a lot of stuff we didn't understand).  But we also read this -- Current Status:  partial remission.  So, hey -- we thought that sounded pretty good after only 2 treatments!!

Just a side note -- if you haven't given blood in awhile and are blessed with good health, please trot over to your local blood bank and give some up!  It really is a lifesaver.  xoxo

L

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