The New Normal

My latest grandchild was born last weekend.   He’s beautiful, born with cheeks that would make a chipmunk jealous.   This follows the birth of my 5^th grandchild less than 4 weeks before.  He is equally beautiful (aren’t they all) and is blessed with his dad’s hands and feet (quarterback maybe?).   This is probably not the way you were expecting my Leukemia update to start.   The thing is, I was in the hospital when both were born and instead of me going to them for our first snuggle, they have to wait for the right time to come to see me.    Welcome to my New Normal.

 I’m not complaining mind you, I’m been blessed with 4 great children, 6 grandchildren and a wife that lovingly has put up with me for 40+ years,  it’s just that this disease has taken up residency in my life and wormed it’s way into the family creating a whole new definition of what normal life looks like.   Takes a bit of getting used to.  You can tell I’m not there yet.

When we last left our patient I was moving on to the next stage in the treatment (Consolidation).   This consists of high dose chemo (High Dose Ara-C) for 3-5 days in the hospital followed by 3+ weeks of recovery at home, most of it in isolation.   In those few days you get 10X of one of the original chemo drugs you got during the first phase.   Over the next 12-16 days after the chemo the drugs kill off all your immune system (the white blood cells called neutrophils).     Your body then rebuilds itself over the next week or so and then it’s back into the hospital for another round.  Rinse and repeat for 4 months…call it the “Ground Hog Day” treatment (a classic Bill Murray movie worth watching).

It takes about two weeks after the chemo for your body to hit the low point (called the nadir).   If talking about blood makes you queasy you may want to skip the rest of this paragraph.   The three components of our blood (platelets and white/red blood cells) come from stem cells generated in our bone marrow.   This type of chemo stops the conversion of stem cells to neutrophils (and unfortunately impacts other red and white blood cells as well).    White blood cells have a life span of 5-21 days and neutrophils are on the lower end of that number so to clean out the system we also have to wait for the ones already in the body to die off.   Thus the two weeks to hit the low point. 

As mentioned, the chemo also affects the creation of red blood cells and platelets (I call it the spill-over effect).  Every drug I take and every procedure has a spill-over effect or more often know as side effects in drug commercials.    You have to love the drug commercials on TV…”do not take this drug if you are allergic to it (Duh!).   Side effects can in include nausea, headaches, liver, kidney and heart problems which can be life threatening, in some cases people have been known to grow a third arms or have their ears fall off….”  

Sorry…got carried away.   In the case of the chemo, you deal with the impact on the white blood cells by trying to isolate the patient from infection and responding with medications immediately if one develops.   To deal with the impact on the red blood cells and platelets you have to get transfusions.   So post chemo does not offer the luxury of sitting at home watching day time TV while the brain goes to mush (no offense meant to daytime TV watchers) but rather involves a series of Dr. Appointments, blood tests and transfusions several times a week.    Sprinkle in a few other Dr. appointments for the craters in my back, the chemo impact on the eyes and the cardiologist checking my daily heart monitor and I keep a pretty active schedule.    

In terms of how I feel?  It’s still early in the cycle, just a couple of days post the hospital, but I’m doing OK.   The hospital chemo is intense and you go through similar issues I went through last time, just packed into a smaller period of time.   It has left me tired, nauseous at times, famished at others, and with a digestive system that is playing some interesting gymnastics but other than that I’m doing well.    The real test will be getting safely through the next 9-10 days as we hit the nadir.   And of course, working on getting used to this new normal.

Stay well!