Detours

Thanks to the phenomenon that is ‘chemo brain,’ I have resorted to sticky notes.  I have them all over my desk – my next grocery list, things I need around the house, and a list of topics on which I want to write, among others.  I use the lined sticky notes because my handwriting gets worse in proportion to my blood chemistry.  How many of you can say that? Then again, how many of you keep such close track of the little numbers? When I get one of those ‘eureka’ moments, I write down the gist of my idea and repost the sticky on the hutch next to my computer monitor. I actually have five topics, which is unusual. I’ve typically been staring at the ceiling at 3:00 am or watching the wall late at night hoping that inspiration will jump out of the paint and seduce me like some ethereal muse. Suffice it to say, I had planned on sitting down and fleshing out the ideas after dinner tonight before turning my brain off with a TV series on Netflix (I loathe commercials, so Netflix is my chosen alpha wave inhibitor … except at the Super Bowl, then it’s the only part of the program I watch. Go figure!).

I had arrived home after some physical therapy and a routine blood test and had finished writing out a paragraph of one of those five topics when to my annoyance, I got a call from the hospital asking me to come back right away because my platelet count was now low enough for me to require an immediate transfusion. One of the side effects of both leukemia and chemotherapy is that platelet count drops precipitously. That’s a problem because platelets keep you from bleeding to death. Normal platelet counts vary from 150,000 to 450,000 per μL. My count was just under 6,000. Sigh…OK, let me finish my lunch and I’ll come back. Another needle stick in the lab to ‘type and screen’ my blood (fourth time doing this) and then an IV in the AMU (ambulatory or outpatient ward) and another enjoyable time looking at the four walls searching for inspiration. They also made an appointment for me to come back the following day for whole blood and do this all over again, minus the ‘type and screen.’ From the time the blood products arrive, irradiated, platelets take about an hour; blood takes up to six hours. It can happen faster, but I didn’t have my PICC line in and that’s quite all right! On the plus side, every time I come back to the VA, it’s like Cheers. Everybody knows my name. I even get to choose my phlebotomist more often than not. Then again, all of these people are really well-practiced and I barely feel it…but hey, Walter is the man! Face it, we have our favorites. How many of you have favorite phlebotomists? Anyone? Yeah, didn't think so.

The outpatient rooms are set up with recliners or a couple of beds.  I figure if I’m going to be there, I want the bed in case I get sleepy, which is often these days. Since most people are in and out, they typically choose the recliners. Taking a bed, I don’t have to be exposed to someone else’s TV selection and I can read in quiet or just listen to music with my headphones with the lights out. Let’s make this as pleasant as possible! When I returned for my blood transfusion on Tuesday morning at 7:00, I got my blood chemistry and count at the lab and then up on the ward, got the same room; I took the bed closest to the window again and began the waiting game. About 10:30, they began the transfusion and by that time, one other patient had gotten his dose of chemo and a second was getting hooked up. I dozed a while and was awakened when the privacy curtain between the two beds was drawn. They brought me a lunch tray, so I took my headphones off and noshed a little.  I had been feeling a little tired because of the anemia of this stage of the chemo cycle and didn’t feel like eating all of it, so I put the tray back and read a while. It was at this point that the privacy curtain was anything but private and the conversation was one that I couldn’t avoid, no matter how I tried.

I assume it was a social worker rather than a doctor because no medical terms were used, yet this was the conversation I’d heard about. NPR’s Talk of the Nation.  The advertisement about conversations with patients about death on my local station, KUER, (shameless plug to my member station!) caught my attention, but I was a bit reticent to listen to it...yet, like a train wreck, I had to and now I was actually hearing one of those conversations through the curtain, dealing with quality of life issues, determining whether the side effects of the chemo were worth it, when to have hospice come to his home and when to begin palliative care. It was a very sobering conversation, to be sure, but the thing I noted from the person who was giving information, there was never anything that was less than hopeful and positive. I was impressed not only with the conversation, but in that I was even more at peace with and even hopeful about his and my own mortality both.

To illustrate these difficult decisions, my dad tells me a story of two friends he had known since childhood -brothers who, a few years back, received the identical diagnosis of terminal esophageal cancer, both given the same prognosis of six months to live. One elected to cash out his retirement and live out the rest of his life, doing what he had always wanted and spending time with loved ones. He died almost exactly six months to the day; the other fought the cancer to the bitter end with chemo, radiation, and surgery. The second, whom I remember as a young boy (pictured above with me as a 3 year-old), received his diagnosis just before his brother's death and won only three additional months, but spent a lot of that time in a hospital bed.

I also found out that I’m among a number of people who use a blog to get how we’re feeling out on the table, to talk about (and I’m paraphrasing, but it’s so accurate in my own story) trauma of painful exams and the nasty side effects of chemo, anxiety, funny and raw photos, and the love for our caretakers and admiration for medical professionals (Here’s the story from NPR – Why Patients Should Blog About Illness and Death ). It should come as no surprise that with the events this week my attention has been drawn to the full spectrum of life – from the day-to-day quality of life to its end.

There are lot of directions life takes us, and often it takes us on a wild detour that we couldn’t possibly foresee.  I sure didn’t anticipate the fork in the road that took me down the Leukemia Interstate Highway, but I’m cruising in the middle lane on a destination that I know will take me through Seattle.  Much beyond that, I don’t know. I get to spend a lot of time with people that I wouldn’t otherwise and meet still more incredible folks that would not be part of my circle. While it’s not fun spending as much time in the hospital as I do –both in and outpatient-it truly is like Cheers. Everyone knows me and they smile when I come in and it makes it that much easier to go through it all. I’m finding that a lot of people I didn’t know were friends have come forward and been present when I needed someone to just be there and hold my hand and others who have just faded away; and I’ve found just how very fortunate I am to have the extended family I do, and so much of it local! I wish I didn’t have to come to see everyone’s true colors and so vividly through the tears of leukemia, but…it’s what I have. Take a look-see at the people around you and see who just needs you to be there. Don’t wait for something catastrophic. What’s the worst thing that could happen? You get detoured off on some tangent and cement a really good friendship in the process.

Be well, stay strong, and much love to every last one of you!

Today’s music from Nickelback – If Today Was Your Last Day

My best friend gave me the best advice
He said each day's a gift and not a given right
Leave no stone unturned, leave your fears behind
And try to take the path less traveled by
That first step you take is the longest stride

If today was your last day and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last
Leave old pictures in the past?
Donate every dime you had, if today was your last day?
What if, what if, if today was your last day?

Against the grain should be a way of life
What's worth the price is always worth the fight
Every second counts 'cause there's no second try
So live like you're never living twice
Don't take the free ride in your own life

If today was your last day and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past?
Donate every dime you had?

And would you call those friends you never see?
Reminisce old memories?
Would you forgive your enemies?
And would you find that one you're dreaming of?
Swear up and down to God above
That you'd finally fall in love if today was your last day?

If today was your last day
Would you make your mark by mending a broken heart?
You know it's never too late to shoot for the stars
Regardless of who you are
So do whatever it takes
'Cause you can't rewind a moment in this life
Let nothing stand in your way
'Cause the hands of time are never on your side

If today was your last day and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past?
Donate every dime you had?

And would you call those friends you never see?
Reminisce old memories?
Would you forgive your enemies?
And would you find that one you're dreaming of
Swear up and down to God above
That you'd finally fall in love if today was your last day?