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!

Life one day at a time

I’m a planner…always have been.   Where should I go to college, what career am I interested in, where are we going on vacation next year, how many children should we have, where are we going to retire, …you get the picture.    One look at my daughter’s itinerary for her Disney vacation and it clear it’s a skill (or character flaw) I’ve passed along. 

As you might imagine, living in the world of cancer treatment where your visibility for planning is literally from day to day (sometimes hour to hour), can be a little disconcerting for someone like me.    The big planning items are definitely off the table, no vacation plans for the foreseeable future, avoiding major financial decisions, suspend plans to visit new grandchildren or even the existing ones, and no major home improvements.    Instead you spend your time on mundane daily activities like your schedule for when to take the multitude of pills (I need a spreadsheet to track it), what foods to eat and when (not to conflict with pills), scheduling DR appointments, wound care and general hygiene.  Simple things like mouth care take on a whole new level of importance as you try to avoid mouth sores and prevent any bleeding.  Turns out an open sore in the mouth is the fastest way to get an infection given the amount of bacteria present.   Something as simple as making your gums bleed while flossing can mean a free trip back to the hospital for more antibiotics/antibacterial meds.    As an aside, for all you dog lovers, your dog’s mouth is not cleaner than a human’s.  One look at where my dogs’ lick or stick their noses when meeting other dogs makes that clear (not to mention what they are willing to eat given the chance). 

The other things that get priority are of course the health ones, like scheduling DRs appointments, lab tests, dentist appointments, and of course going back in the hospital for the next round of chemo.    Most of these fall more in the hurry up and wait category.   You have to love the irony of being told it is critical you be kept in the hospital because you have a cardiac reaction to meds or fever, told to follow up with the DR when you are released, and then you call for an appointment and he can’t see you for 2 months because he is booked up.   I guess if I want to see him sooner I’ll need to have a heart attack or something. 

Other day to day items are more stressful, like getting an answer on whether the next level of treatment will require a Bone Marrow Transplant or Chemo Consolidation.    No small issue given it affects not only when you go into the hospital and how long you will be there but also minor issues like finding donors, financial implications, and survival rates.    As I mentioned last week, we were waiting on test results that would tell us which path we needed to take next.    First round of tests showed I was favorable for going straight to Consolidation but relapses are frequent which is why survival rates are measured over 5 years.  Leukemia is a tricky bugger.  Because it is in the marrow/blood the little buggers can hide in multiple places and tests can’t always determine if all the cells have been destroyed.    In getting a second opinion from the Fox Chase Cancer Center they run an additional chromosomal test called C-Kit that determines the likelihood that you will have a relapse and ultimately need to get a Bone Marrow Transplant (sometimes called a stem cell transplant).    It was this test we were waiting on. 

Friday came and went without an answer and given pathology labs don’t work weekends (because of course patients love to be left hanging), Monday was the new target.  Monday too came and went without an answer which delayed plans for getting me back into the hospital for the next round of Chemo.   Tuesday brings an answer…C-Kit is negative (prayers answered…thanks everyone).    With that one result, the 5 year survival rate just doubled to 50%.  

So it is on to Consolidation Chemo this week.   We will be doing it at Fox Chase in Philly where there is a 3 day/3 week regiment…3 days of high intensity chemo in hospital followed by 2 ½ weeks of recovery at home with out-patient support for blood transfusions, medications and labs.   And to make sure I don’t do any long term planning, this will essentially put me on a day to day schedule for the next 3-4 months.  More on this next week as I get a feel for what this will be like.

Of course I can’t let the week pass without mentioning Monday’s Boston Marathon.  For a short while I actually thought I might be able to make it up to see the race but between Pam and my DR clearer heads prevailed.  So on race day I was riding the couch (instead of the bus to the start), watching the run online (instead of being at the starting line with the other runners) and sharing the experience with Pam and the dogs (vs 26000 other runners and 1million spectators).   Totally selfishly, I earned the right to be there and to say it was disappointing is an understatement.   Another good example of just letting go and taking things day to day for a while.  Not sure I’ll ever get use to this.

Till next week….

On Parole

I clearly have been in the hospital way to long.  Besides knowing the names and ages of many of my nurse’s children, I can recite my medical records number by heart (I call it my prisoner identification number).   Everything is automated these days and the MR number ties me to all the meds, procedures and blood that I receive…making sure they can charge me for every aspirin I took.   

 Here’s a few more clues you have been in the hospital too long:

-          You can order meals without looking at the menu because you know it by heart.  You even start playing games where you try to order an entire meal (including condiments) without any questions from food service.  I knew it was bad when I found myself give a new patient a run down on items to avoid.

-          Know the names of other patients and what they are in for.  There are a lot a parallels between being in hospital and being in prison.  Walking the halls can be a bit like a walking a prison yard.

-          You’re on a first name basis with the cleaning people, food service and both shifts of security guards.

-          The nurses stop feeling sorry for you and start giving you a hard time.

-          You hold the reputation for being the floor veteran.

-          You have more than 50 family pictures on your wall (we were close to 100).

-          The staff starts treating your family like they live there.

Well I did my time and after 35 days I was paroled to wait for the decision on our next stage of treatment.   It was pretty surprising how fast things turned in the last 6 days.  Blood cell counts shot up every day, I shed 10 lbs. of water weight, energy levels are up and appetite and sense of taste is coming back.  On the down side, the steroids for the Sweet Syndrome volcanoes have me wired, give you night sweats and make it hard to sleep.  In addition the drugs I’m on have messed with my heart (PVCs and QT span) which have the cardio DRs checking in on a regular basis.

Being on the outside, the one thing you have to watch for is a fever.    The immune system is still compromised and the ability to fight off infections and viruses are limited.  Our Dr. framed it this way “In an analysis of two groups of patients; those that responded to a fever and got antibiotics right away vs the group that did not, the first group survived the second did not.”   

 So when I spiked a fever last Saturday morning it was back to the hospital for more tests and treatment.  As usual it is never as straightforward as go in and get antibiotics.    After taking copious blood out of both arms, and swabbing for viruses we sit and wait for results.  Mean time the heart monitor detects my heart has gone into afib and now the cardio guys is all up in my face.    It takes 2 days in the hospital to get things sorted out and everyone to buy off on letting me go home.   It feels a bit like the line from Hotel California “You can check out any time you want but you can never leave”.  They never did come up with reasons for what caused either the fever or the cardio issues. 

 Now it’s on to the next phase of treatment.

 Like most people, I’ve asked myself the question “What would I do if I hit the lottery?”    Quit work?  Spend more time with the grandchildren?  Travel? Give a bunch away to charities?  When the Powerball drawings get big enough, a lot of us let our minds wander there.   In my case, maybe the question I should have been asking is “What would you do if you hit the lottery for a life threatening disease?”   

There were approx. 20,000 cases of AML (Acute Myeloid Leukemia) diagnosed in the US in 2015.   That’s only 1.3% of all cancer diagnosis and doesn’t even make the top 10 list of cancers (it is however one of e deadliest).  Breast Cancer by contrast had 231,000 new cases.   That makes the odds of winning the AML lottery in the US about 1 in 17,000 people.   It would be nice to get a thank you note from the other 16,999 people for carrying the load. 

 Having won my ticket to the exclusive AML club we now have to figure out what my prize is.   The prize in this case is the type of AML you have which is determined by the amount of chromosomal damage.   To do that, you give bone marrow samples before and after the first wave of chemo.  These are run through a bunch of cytogenetics tests to determine your risk factors.  Then like a game show you meet with the Dr. “game show host” who delivers the “Show our contestant what he’s won.”   It could be a 4 month no expense paid trip directly to Consolidation Chemo treatment if the diagnosis is favorable.   The alternative would be 30+ day adventure trip to the hospital for a Bone Marrow Transplant if they can find an appropriate donor. 

 So this weekend instead of being in Boston running the Marathon (or even just participating in the activities around it), I’ll be sitting home waiting to hear what is next with the treatments.   Yes it sucks but my revenge will be kicking the crap out of Leukemia and getting back to more Boston’s in the future. 

Till next week….

Of Angels, Demons and Heroes

Your world gets awfully small when you are in chemo treatment.   It includes your room (which is constantly invaded by nurses and DRs), and the hallway in the oncology wing (about 21 laps to the mile).    Your room has a bed, chair, couch (which at times was more comfortable than the bed), TV and a bathroom.    In truth, you don’t need too much more than that since you constantly being entertained by DRs and nurses taking vital signs, drawing blood, giving meds, examining, poking, and prodding.   In the course of my treatment I saw over 2 dozen DRs from 8 different specialties including infectious disease, wound management, cardiology, dermatology, Ear, Nose, and Throat, ophthalmology, oncology, gastroenterology.

Of course they never show up at the same time making sleeping in the afternoons almost impossible as literally every 15 minutes another DR or PA is showing up to examine you.  If I had a dollar for every time someone came in and put a stethoscope on me I could likely pay most of my medical bills.    The most interesting part is the lack of coordination across the specialties.  At times Pam and I were coordinating treatments across DRs, treatments that often conflicted with each other.  

Which brings me to the nurses and techs (nurses aids).  To call them angels is an understatement.    They were my daily care givers, my lifeline to the DRs, my counselor when I needed to know what a procedure entailed, my calendar keeper for tests and meds,  my advocate when I needed help,  and often late night conversationalist when I couldn’t sleep.   In addition to their medical duties they made sure we were fed, cleared our food trays, emptied and tracked bodily fluids, and tried their best to protect our sleep.  They held my hand through the bone marrow biopsy, entertained me by drawing a caricature of my best chemo look, encouraged me as I walked the floor, and checked in to get the latest on the birth of our newest grandchild (another boy).   Ring for a nurse and the majority of the time they were there faster than the best concierge.   Seldom in the course of the last 30+ days did I feel like I was anything but the most important patient on the floor.    

The demons are the daily challenges that you face that eat away at your confidence.   Sometimes its new challenges like determining what the volcano wounds on my back are (turns out to be Sweets Syndrome), needing Heparin shots (which are given in the stomach), dealing with spiking fevers (which in turn require tapping a new vein for more blood), getting cardio problems under control (more EKGs, Echocardiograms, and x-rays) and the biopsy the wounds as well as the bone.   Some things you know are going to happen but it’s still a blow when they do.   Like your feet swelling up from the fluids till they look like a uni-toe hoof.    Or the day when my shower looked like it was used by Chewbacca…didn’t need that hair anyway.   In most cases it’s not one big thing that gets you, it’s the constant barrage of body breakdowns and the resulting treatments and their side effects.  

Got to love MRIs.   Put somebody on a slab, tell them not to move for an hour put in ear plugs, headphones (with music), stick them in a small metal container that resembles a casket and then blast the sound of machine gun fire at them.  Occasionally ask them how they are doing but don’t listen to the answer.  And what’s the point of the music?  You can’t really hear it while the machine is pounding away, but if you happen to find yourself tapping your toe to a tune you are abruptly asked to stop moving.  Like going to a dance where the music is great and you can dance all you want as long as you do it in your head.

 

And then there is the food.   After a while everything smells and taste like hospital.  My daughter says it’s the chemo and she can smell it coming off me.   It makes ordering food interesting….I’ll have the white fish cooked in the chemo sauce and the bland brown rice with the hospital smell.    And what is it with cooking everything until it’s dried out, soggy or flavorless?   I guess if everything taste like nothing then you know exactly what you are getting.   It’s one area where there were no surprises.

The hospital smell also making wearing a mask pretty interesting since you end up recycling your own air.  Reminds me of being stuck in a cab in India without air and with a driver who clearly had been working a 24 hour shift in 100 degree weather.   Popping an Altoid (strong mint) before putting on the mask can help.

I apologize, I know I’m whining a bit.   I’m no hero, just a guy making it through this phase so I can move on to the next phase of treatment with the goal that somewhere down the road there will be a cure.  But there are heroes on the floor and I admire them greatly.  The family members who come day after day and sit by the bed of their loved one even when they are sound asleep.  Who sleep on the couch in the room overnight when a cancer patient is having a particularly hard night.  Who take on the burdens of outside life so the patient can focus on what they need to do to get better.  And then there are the cancer patients themselves.  The ones that have been at it for over 6 months, who are facing daunting odds to recover and who are in significant pain yet they fight on, day after day.  I’ve seen the determination on their faces, heard the cries of despair in the night, and seen them work to make it easier on their loved ones who come to visit.  They are the real heroes.

Angels, demons and heroes…it’s a strange combination but then again a cancer ward is a strange world.

Next time…finishing up Phase 1 and preparing for Phase 2.

Surviving the Dead Zone

Have you ever noticed how the medical community has a tendency to use terminology that helps to obfuscate or maybe even minimize the reality behind what is involved with  a particular procedure?   I hadn’t really thought about it much until I found myself on the receiving end of a number of procedures where I had to ask the question “how is that going to be done?” followed by “you are going to do What?” ….. scared witless by the explanation.  Some questions may be best left un-asked.

Take the 30+ days of the first phase of Leukemia treatment called Induction.   I’ve seen people inducted into all kinds of clubs/groups….Boy Scouts, Sports Halls of Fame, Knight of Columbus and when it was over, I’m not sure any of them would say…I’ll never do that again.  Heck I went through a week long induction into a fraternity and other than some embarrassing moments it was a rather enjoyable adolescent experience.

As I mentioned last week the Leukemia Induction has two phases; Chemo (we covered last week) which goes by the catchy name of 7+3; and there’s the recovery period (which lasts 3 weeks).   Of course I had to ask the stupid question “why am I hanging around for 3 weeks if I’m done with Chemo?  This is when DRs start shuffling their feet and you get a bit more detail about what I ultimately have named the Dead Zone.   This is a 14 or so day period where you have no immune system, no clotting function and limited or no ability to generate new red blood cells.  A sneeze from a person with a cold can be deadly, a cut or a bruise could bleed unabated (as I was to find out), and a fever can spike into the 102-103 area without notice or explanation.  Add to this, keeping fluid levels up to avoid damage to liver and kidneys from all the meds, diarrhea, rashes, spiking fevers, and mouth sores to name a few and you have an idea of the complexity the issues the DRs and nurses are trying to balance, sometimes literally on an hour by hour basis.   The Dead Zone is where the battle is waged…it’s your body, the DRs and nurses, and your cache of drugs vs the world of bacteria, fungi, viruses and your own occasional ineptitude (like a trip and fall).

When I entered the Dead Zone I was pretty optimistic about getting through it with minimal discomfort.  I had  only  the 4 jobs I mentioned last week…Eat, Drink, Sleep, Walk (of course scattered amongst those was some serious  talking with the creator as well).      Sounds pretty simple.  First monkey wrench in the works was the volcanic cysts on my back. 

 None of the continuous stream of DRs could figure out what it was, what caused it or why it was getting worst.  Lots of tests, pictures, poking, and the second worst words you can hear from a doctor examining you, “Interesting…I’ve never seen anything like that before.”    Tests ruled out shingles, and a few other items that scare the crap out of the DRs because of high contagion rates and difficulty treating in the dead zone.  Much discussion over a Lidocaine reaction from the bone biopsy but no one has seen anything like this as a reaction before.   While the DRs ponder I’m stuck with trying to find a position where I can get comfortable enough to sleep.   Nights typically involve 1-2 hour segments of sleep interspersed with hallway walks or trying to catch a cat nap in a chair.  Sitting in a chair can be more comfortable than lying down although even that only lasts an hour or so.    Pain from the site turns bad at times and for reasons I don’t understand.  Even without any direct contact it can stat firing off burning pulsing pain from the spine to the hip.  One of those nights I spent the entire time either in a chair rocking back and forth or walking the floor. A definite low point….the Dead Zone can be a lonely place. 

 

Seven days into the Dead Zone and I have a much better feel for what I am up against.     In addition to the cyst and sleeping problems I’ve totally lost my appetite.   Initially it was because my stomach always felt full partially because of all the water weight I was holding and partially because of the burping.  Once they got the burping under control (more drugs) and nausea (even more drugs) I had lost my sense of taste.   It’s a really strange experience to not be able to tell what you are eating.  I actually couldn’t tell the difference between chocolate and vanilla ice cream. 

In sympathy with my two pregnant daughters I’ve decided to align my symptoms with there’s.  I gained 30 lbs. (in 10 days), have to pee all the time,  have a bed full of pillows to try and find  a comfortable position to sleep,  swollen feet and ankles, and the thought of eating makes me nauseous.   I dreamt the other night that I was pregnant with an alien being and it was going to crawl out through the cysts in my back.  And that was before they put me on any of the good drugs.

From the neck up I have the scraggly somewhat crazed hollowed eyed look of Tom Hanks in Castaway.  From the neck down I look like the Pillsbury dough boy except with the all body rash it’s more like the Raspberry Dough Boy.

Because everyone needs a bit of excitement in their day we threw in a spontaneous nose bleed.  Sitting talking to my wife and blood starts pouring out of one of my nostrils.   Clamping the nose shut and tipping the head back just caused all the blood to rush down my throat.  Without getting into the gory details, it was three hours of spitting up blood clots and clamping the nose until a nose specialist could come and pack the nose to stop the bleeding.  BTW…that joins bone marrow biopsies as another item for my “Bucket Black List” (things I don’t want to do (again) before I kick the bucket).   Packing the nose involved shoving a stiff piece of card board like material about the size of a nail file up your nose till it feels like it’s coming out your eye and then spray it with saline to make it expand.    And because no good deed goes unpunished, my eye swelled shut for the next couple of days until they decided they could pull the packing out. 

Seems every day there is a new problem/symptoms (rash, sore throat, headaches, back/wound pain, swollen eyes, fevers, nose bleeds, etc.).   For each problem there is a treatment which in turn often has side effects that generate new problems which in turn have other treatments….you get the picture.  Nose bleed was a classic example.  Antibiotics for spiking fevers results in a rash which in turn itches and has to be treated with another med which in turn affects the heart rhythm which requires constant heart monitoring. 

All that said, I have survived the Dead Zone, or at least the first two weeks of it.    It’s been an obstacle course of tests and experiences that taught me a lot about patience, pain, flexibility, resilience and prayer.   

Next week if all goes well we will talk about turning the corner and the body’s recovery.

Stay Well!
PS…2 weeks to the Boston Marathon.  There is still a chance I could get out of here in time to make it to the starting line.  Making it through the first mile however would be a totally different discussion.