Firmly believing that, in many ways, we are a product of our choices, I have to make a choice on how to respond to the simple 'how are ya's' that come my way.
Maybe I could say what I'm THINKING:
'How am I? Now, I'm not complaining, BUT I've spent the last week being sick to my stomach. I have insomnia and I can't find a single sheep to count. Flu-like symptoms, neuropathy, poor appetite, foot and hand cramps. Without being too graphic, I have a runny nose, I feel like I've been run over and I'm running on empty. I've been regurgitating things I don't specifically remember gurgitating!
My insurance provider has changed for the second time since my diagnosis in November of 2008. Hope they cover my treatment. My Revlimid delivery was two days late because I have to use a new pharmacy approved by the new insurance company. It says right on the pill bottle '21 days on, 7 days off' - not 9 days off! My medication co-pays have tripled under the new plan. If they don't cover Revlimid it will be $7500 a month.
The new, personal-service insurance rep called me 'Scene Murphy' - my name is Sean Murray. Sean, like Sean Connery, the guy whom would kick your rear end if you called him 'Scene!' And it's Murray, not Murphy. Not that there's anything wrong with the name Murphy. My Irish grandmother was a Murphy - but my grandfather was a Murray. Good personal service starts with calling me by the right name.
Because of the insurance change, I have to educate another dentist about MM and assure him that it is okay for him to clean my teeth even though I'm receiving quarterly Zometa infusions. Yes, I have heard of Osteonecrosis of the Jaw, but my jaw bone will not die if you, or your nice, but overly perfumed hygienist, don't accidentally rip out one of my teeth while you're trying to clean it.
And yes, even though I've had several rounds of high-dose chemotherapy, two stem cell transplants, a dozen bone marrow biopsies, three kyphoplasties to repair collapsed vertebrae, a filter placed in my inferior vena cava to stop runaway blood clots from killing me, lots of broken bones, hundreds of blood tests, and I am undergoing THREE YEARS of maintenance chemo, I'm not a tough guy. If I just happen to have a cavity, I pray that Dr. Newdentist gives me enough Novocaine to deaden the pain, as I gave up biting on a bullet or slugging back whiskey from the bottle years ago. One time a dentist slipped in his chair and gave me a shot on my eyelid.
Oh, and I had to replace my roof, my gutters are 5 weeks late, it's hot, Hot, HOT outside, my new puppy has mange, my glasses broke, the air conditioning on my family van isn't cooling well, I can't taste my food, and the weeds are preparing to quick-march an assault on the grass in the yard. And I have this thing called peripheral neuropathy that makes my hands and feet numb.
AND, I still have to drag my anemically exhausted body to my weekly maintenance chemotherapy sessions - only 122 weeks more to go!
I missed church because I felt it was more important for the congregation to hear the minister's message than to try and decipher the Morse Code of my coughing fits. Three long sneezes, two short coughs, three long sneezes - SOS, Save our Scene, I mean, Sean!'
That's what I was THINKING. But what I chose to SAY was:
And you know what? Life IS an adventure. Life with Myeloma is a chaotic adventure. God didn't promise me an easy path, but He sure made it an interesting journey. Yeah, I'm doing GREAT!
Keep fighting out there in Myelomaville!