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.