Long overdue post

I can't believe the last time I posted was October 5!  This month has flown by.  The day after my last post, on Oct. 6, I had to have an emergency ERCP to replace the stents in my common bile duct.  I woke up that morning with a series of symptoms that made clear to me that the duct was blocked.  I emailed my gastroenterologist, Dr. Sandhu at 6 a.m. explaining my circumstances, and he replied within 30 minutes.  I was in and out of VCU Medical Center that same day with a brand new, covered metal stent that should last from 6 months to 2 years.  I was home that evening by 5 p.m. and felt light years better.  The improvement in my appetite and energy level was immediate and stark.  Of course, the party lasted only a few days because the following Tuesday, Oct. 11, I had chemotherapy after an office visit with my oncologist.

On the 11th my oncologist, Dr. Shaw, told me that I was doing really well with the chemotherapy (and most people can't handle the regimen I'm on) and was going to "reward" by increasing the strength of my chemo drugs by 5% across the board that very day.  So my already harsh chemotherapy was about get more challenging.  I have to confess my instant reaction was "great, I'm doing really well."  Once the drugs started to drip though it was obvious to me that I was in for one hell of a ride.  The neuropathy in my fingers and toes was almost instantly worse within minutes of the first drug (oxypalatin) going in.  I couldn't even touch room temperature objects without sharp pain in my fingers.  Then the next drug (irinotecan), the one with the worst side effects, started and within minutes I felt nausea like never before.  By the time that bag finished dripping I was barfing like a champ.  They gave me lots of anti-nausea drugs by IV and that helped me recover and eat when I got home that evening.  The truly amazing thing was that I rebounded very quickly--more quickly than with any previous chemo treatment.  By Wednesday afternoon, the next day, I was up and about and eating semi-normally.  Elaine is convinced the stent replacement was crucial to my quick recovery.  By Saturday, two days after my 46-hour chemo ball of the last drug was detached, I drove the pick-up truck, with Elaine, to and from a furniture store and was moving furniture to and from my buddy's house up the road.

Over the next week and a half I managed to gain weight (I was up to 188 lbs. at chemo on 10/25) and exercise as much as my fatigued body would allow.  When I arrived at chemo Tuesday, the nurses remarked at how great I look.  That's always a nice feeling.  I didn't barf at chemo this time, although I came about as close to doing so as one can.  This time it hit me at 2 a.m. on Wednesday and it was awful.  I slept very little that night and despite Herculean efforts, could not sleep during the day yesterday.  Last night, however, I slept like it was my job and feel good this morning.  (I'm back on caffeine again by the way, but only one cup of coffee or tea in the morning).  I get my chemo ball detached today at about 1 p.m. and then I am less than  two weeks away from my (hopefully) final chemo treatment on Nov. 8.  The following Monday, Nov. 14, is a big day.  I am having a full abdominal MRI to see what progress, if any, we've made in killing off the bastard cancer cells, and whether I am a candidate for surgery (the Whipple procedure) that will eliminate the need for bile duct stents for the rest of my life.  The surgery is my goal, which is strange in a way because it could kill me and will take up to 2 months to recover.  However, it could also extend my life significantly beyond the 11 months this chemotherapy is supposed to buy me.  The result of the MRI could also be that I need more and/or different chemo. We shall see but I'm hoping for a truly Happy Thanksgiving.

I want everyone to know that I genuinely appreciate every word of support that all of my friends have provided.  I can never thank my wife enough.  She is an amazingly strong woman, and a phenomenal caregiver.  I love you, Elaine, and always will.

This is more like it

Despite a splitting headache (I quit caffeine for good yesterday) I feel great today, and am full of energy.  This is the polar opposite of how I felt yesterday.  I was up early and walked the dog despite the cold (the sensitivity lessens each day removed from chemo) and feel terrific (again, headache notwithstanding).  Staying away from caffeine has absolutely helped with the nausea, as has the change to Zofran.  Elaine was so happy to have my help this morning, and to see me feeling like my "old self" even if only for one day.

I intend to suck the marrow out of today and then watch Roy Oswalt send us to the NLCS for the fourth year in a row.  Go Phils!!!!!!

PS - I'm down another pound to 179, but it could be because I've been exercising more.  Gotta watch the calorie count more closely.

Bad Day

I'm having a rough time today, and it's mostly frustration with the ever-present queasiness from chemo.  It never quite seems to go away, and the slightest misstep -- the wrong food, the wrong beverage, too much of one or the other -- and it immediately returns as full-blown nausea.  I'm over it.  Today I am going back on Zofran (a previously prescribed anti-nausea med) and stopping with the Phenergan, which lately has not been all that effective.  The Zofran seems to be helping a bit this morning, but I still have this undercurrent of queasiness and fatigue which I can't seem to shake.  I'm working hard to keep my frustration from boiling over into anger, because that upsets my stomach all the more, but it consumes all of my focus and energy (of which I have little at the present moment).  I've lost 5 pounds since last Tuesday (down to 180) despite eating all I can.  This is discouraging in the extreme.

I know that we all have good days and bad days, but lately I feel like I've been getting a glut of bad ones.  One or two days of "feeling good" out of each two-week chemo cycle isn't cutting it.  I will address this with my oncologist on Tuesday when I am scheduled to see him next.  I wish I could know for certain that all of this is worth it and that the cancer cells are dying in droves, but I don't.  All I know is how I feel and most of the time it isn't good.  The thought of two more months of this overwhelms me at times, like now.  There are others far worse off than me, but this knowledge doesn't seem to help me.  I just want to feel better and more energetic, but nothing I try seems to work. 

I guess there's always tomorrow...right now I just have to deal with it as best I can. I'm trying.