Embracing the Suck

Have you ever stumbled on a song that is particularly relevant to where you are in your life and it just resonates at an emotional level?  If you haven’t, drop me a note and I’ll fix you up with a good therapist.  

Like most people I enjoy listening to music.    Mostly I listen to pop and rock and I can be caught humming along with songs on the 60’s and 70’s channels (humming is the best I can do…I’m not allowed to sing in the presence of others).    I’m not a big classical or country western fan but I do like some music from both.  I am a fan of Rascal Flatts and when they came to town over the summer I made plans to get tickets.  Unfortunately, with the chemo treatments I wasn’t allowed in crowds so it was a no go.   Another item for the bucket list.

Recently I came across a Rascal Flatts song/video that struck a chord (pun intended).    It’s called Skin and here’s a bit of the lyrics:

Sara Beth is scared to death
To hear what the doctor will say
She hasn't been well, since the day that she fell
And the bruise it just won't go away

So she sits and she waits with her mother and dad
And flips through an old magazine
Till the nurse with the smile stands at the door
And says will you please come with me

Sara Beth is scared to death
'Cause the doctor just told her the news
Between the red cells and white, something's not right
But we're gonna take care of you

Six chances in ten, it won't come back again
With the therapy we're gonna try
It's just been approved, it's the strongest there is
And I think that we caught it in time
And Sara Beth closes her eyes.

Sara Beth is scared to death
As she sits holding her mom
'Cause it would be a mistake for someone to take
A girl with no hair to the prom

For just this morning, right there on her pillow
Was the cruelest of any surprise
And she cried when she gathered it all in her hands
The proof that she couldn't deny
And Sara Beth closes her eyes

 I suspect anyone who has hung in reading the blogs for the last year and a half are as tired of hearing about Leukemia as I am writing about it (or living it).    As I head into the next (and hopefully final) round of treatment, the Stem Cell Transplant (SCT), I’ve had a number of people ask me questions about the process so here’s a series of questions and answers that may help to describe the process.

What’s the difference between a Stem Cell Transplant and a Bone Marrow Transplant.     Basically, they both do the same thing, replace your existing stem cells in your bone marrow with new stem cells that are not polluted with Leukemia.   Traditionally this was called a Bone Marrow Transplant because the donor would have the stem cells extracted from their bone marrow (much like my bone marrow biopsy…big needle stuck in the back of your hip bone) and then likewise injected into the bone marrow of the patient.   Recently they have come up with technology and medications that make the process simpler and less painful.   The donor is given a drug for several days that will draw the stem cells out of the marrow and into the blood stream.  The donor is them hooked up to a machine that takes the blood out of one arm, skims out the stem cells and puts the blood back in their other arm.   The process can take 4 to 5 hours and sometimes is spread over a couple of days.  Once the stem cells are obtained they are infused into the blood stream of the patient where they will settle into the bone marrow after a couple of days.   This process is call Stem Cell Transplant.

Don’t you have to get rid of the bad Stem Cells before the transplant?  Great question.  Yes, killing off the existing stem cells is the first step in the process.   The first 6 days in the hospital will entail heavy daily doses of chemo, in my case three different kinds (not that you likely care but it will be Busulfan,  Fludarabine, and Cytoxan).    These will wipe out all the stem cells which in turn will result in no white blood cells, thus leaving the patient defenseless to any bacterial, viral of fungal infections.    After a day of rest the new stem cells will be transplanted.  

What happens after the transplant?   It takes a few days for the new stem cells to settle in and then about another two weeks before you start seeing an uptick in the neutrophils (the infection fighting white blood cells).    During that time the new stem cells, which generate your red and white blood cells, will not be generating enough cells to keep up with the ones dying off.  The parts of your body that typically require new replacement cells every few days (like your skin, mouth lining, stomach and intestine lining, and hair) will deteriorate.  Hair falls out, skin flakes off, mouth lining can peel off and mouth sores can form, loss of taste, eye infections and of course loss of appetite, nausea, and nasty lower intestinal effects.    It becomes important to avoid any activity that could cause bleeding since platelet levels will also be low (these of the cells that control clotting).  No razors, no falls, no flossing and care when brushing your teeth or blowing your nose.   You will get more blood and platelet transfusions than a vampire at an all you can eat buffet.    Eating can be a real problem both because of the mouth sores and loss of appetite.  Weight loss is a given (surprised some idiot has not put out a book recommending chemo as a weight loss program).

How do you know if the new stem cells are working?    What the doctors will test for is 100% chimerism, meaning all the stem cells in the body are from the donor.   If that is not the case then you may get another dose of stem cells from the donor to try to boost your chimerism.    The real test is whether the new stem cells are generating new and healthy blood and stem cells.   Assuming this is the case, and the patient has been fever-free, then within 30+ days the patient can be released from the hospital.   Daily follow on care and testing may be needed at this point and may require staying near the hospital.

What are the side effects of the transplant?    In addition to the issues mentioned above, the biggest issue is the new stem cells attacking parts of the body that they see as foreign.   This is called Graft vs Host (GvsH) and it comes in two flavors, Acute and Chronic.   The areas most affected are skin, liver, lungs, and gastrointestinal tract although it can also affect the heart, kidney and bones/joints.    Acute GvsH typically happens within the first 90 days and can be life threatening because the system is so weak.   Auto-immune drugs are part of the treatment and one of the reasons patients need to stay close to the hospital after transplant.  Chronic GvsH can occur up to two years after transplant and while not as intense as Acute it can last much longer (on average 2.5 years) and can leave patients with some long term or permanent disabilities.

What if the transplant doesn’t work?  There is a chance the stem cells will not graft or alternatively the cancer reoccurs.   In those cases, the options are limited.   Relapse typically occurs within the first 2 years although the doctors will monitor out through 5 years.   Odds for someone like me are about 50/50.

For those that care about the details I hope this helps.   Day one for me is tomorrow 10/26 and I’ll get my new stem cells on 11/3 (they tell me that’s my new birthday).    I’ll be in the hospital around 4-5 weeks and then in the outpatient facility near the hospital for another 2 weeks.   It’s appropriate that I’ll be in the nightmare of chemo on Halloween, getting my new stem cells a little before my real birthday, will find out if the stem cells are taking on Thanksgiving and my present for Christmas will be getting back home.  Not sure if I’ll be up to blogging during that time but I’ll try to get a few updates out when I’m able.   No promises on how coherent they will be but they are bound to be entertaining.

The best laid plans

It’s hard for me to believe that this month will mark 6 months since I ran the Boston Marathon.    Granted it wasn’t fast enough to requalify but it wasn’t my slowest time either.  Given the warm weather and what I had been through the previous year, I was a happy camper.    This past week I was content to just make 20 laps around the hospital floor (about a mile).     One thing the disease has taught me over the last year and a half is to redefine my expectations.

I’ve mentioned before that I tend to be a goal oriented person, one of those people who believes in the mantra “If you don’t know where you are going any road will get you there”.   Goals lead to planning and planning leads to setting milestones.  Once you set milestones (I’ll need to save this much money by next month in order to save enough for my vacation in 6 months) there is a certain expectation that if you stick to your plan and meet your milestones everything works out.    With Leukemia, not so much.  Oh sure, the goal is easy…to get cured.   But the plan to get there at times seems like a series of suggestions subject to change.  Kind of like using WAZE when you are stuck in a traffic jam and it is constantly rerouting you.

As you might imagine, this reeks all kind of havoc with a “planning guy”.    We have a plan, I know the milestones, I have certain expectations locked and loaded, I’ve psyched myself up…and then everything changes.

You may recall the plan from the beginning of the summer…three months of week-long chemo treatment called hypomethylation (prevents/slows down the leukemia cells from being generated) followed by a Stem Cell Transplant in Sept/Oct timeframe.   The first treatment went fine and as we approached the second treatment in August it was recommended we put in a Port in my chest to avoid all the daily needles in my arms.    On a Thursday they operated and put the Port in but by Saturday I had a fever and my chest was red and bulging (kind of looked like the hulk on one side).     When you don’t have any white blood cell defense one of the things that scare the wits out of the doctors is a fever.   So back into the hospital on heavy duty antibiotics and by Monday they operate to pull out the port.   It takes 7 more days in the hospital to get the infection under control.   The upside, we learned I’m allergic to one of the high-powered antibiotics.  When you break out in an all over rash they decide it might be good to find something else to give you.

Of course, this means I missed my second hypomethylation chemo treatment, soooo, change of plans.   Now they want me back in the hospital for a bone marrow biopsy so we can see how the disease is progressing and maybe start planning to go directly to a late Sept transplant.    We set a date at the end of Sept. for the transplant and put the hospital plans in place.

Just to keep things exciting, another change of plans.  The results come back from the biopsy and the leukemia is getting more aggressive.  In addition, there is a problem with the timing with the donor.   We have to move the transplant to the end of Oct. but it means they need to hit me with a round of chemo to attack the cancer in the interim.   This is not the outpatient hypomethylation chemo, this is the “in the hospital” HiDAC chemo (10x the amount of chemo twice a day for 3 days).   

   

I had forgotten how much fun it could be to be in the hospital with all the concierge care from the nurses (one button and they come running….my dog won’t even do that), the regular wake up visits during the night just to see if you still have a pulse (even my wife doesn’t do that), the broad menu of bland food, and of course the stomach twisting, digestion stopping chemo.    Five days later they send me home 12 lbs. lighter, sleeping 16 hours a day and with a shiny new Hickman Catheter in my chest (they put a tube directly into a major vein in your chest and then attach three lumens/connectors that dangle out on your chest so you can do all the “goesintta and goesoutta” stuff).

You may recall that with HiDAC chemo you hit your low point (nadir) 10 days after your treatment.  At that point your White Blood Cells, Platelets and Neutrophils are significantly reduced and your ability to fight off even the simplest of infections is gone.   A few days after I was home I started developing a sore throat and ear ache (my Neutrophils were 0.0 and WBC count was almost 0).    By a week I had developed a fever soooo, back into the hospital for some heavy-duty antibiotics and a bunch of tests to determine if it bacteria, fungus or virus related. 

As a side note, these emergency trips always seem to happen on weekends which means I have to go to the emergency room for initial treatment.   After spending untold hours there if you didn’t come in sick you are bound to pick up something before you leave.   The waiting area looks like a scene from the walking dead and once inside, the hallways are line with patients in beds hacking, moaning and bleeding.  Because of the risk of infection, they always stick me in a private room and then proceed to forget about me for several hours as they work on real emergencies.    Five hours later I get a ticket upstairs where I spend the next 6 days poked, prodded and scoped (not fun) by doctors from oncology, ear-nose-throat, infectious disease and internal medicine.    The ear and throat never clear up totally but by the end of the stay I’m able to swallow and get food down again.   Final conclusion, I have some kind of viral infection that will just have to run its course and given I’m no longer spiking fevers I can go home.

That brings us up to date on the last couple of months.  I have 2 ½ weeks before I go into the hospital for a week of chemo and then the stem cell transplant.  I have a good donor so the doctors are optimistic.  Mean time I’m in isolation, taking my anti-fungal, anti-viral and anti-bacterial medications, praying my blood counts recover and trying not to go postal from boredom.    I’ll try to squeak in one more blog before I enter the hospital as I don’t think I’ll be able to blog the first 3 or 4 weeks I’m in there.  That may be a blessing.