Wednesday, April 7, 2010

How Much Myeloma Stuff Do You Really Need To Know?

I spent this afternoon in the infusion center at my local hospital (it must be Wednesday!) and in the waiting room there were huddled masses yearning to get their radiation and chemotherapy sessions started and over with. 

Having been treated for a year down in Little Rock, Arkansas at a Multiple Myeloma focused center, I was accustomed to the banter, the quips and war stories centered around Myeloma. But in this local cancer center, patients of all stripes are being seen. I have found their stories and protocols all-at-once  fascinating, and scary and heartwarming. I've learned a lot and made some friends.

Please rest assured that I don't break the ice by asking 'What are you being treated for?' or 'What's your prognosis?', but it seems that many of the other folks have no reservations about inquiring why a fellow like me is eager to get into the souped-up chemo easy chair and why I'm not out making a living on a perfectly good Wednesday. Or why I'm not out doing something productive or world-changing or whatever.

I don't take personally the inference that I ENJOY being here, that I'd RATHER be here and that I have idiotically CHOSEN to get hooked up to toxic chemicals. Sheesh! I'm just making the best of it. Well, maybe they don't really think that way. Maybe it's Mr. Dex taking over my mind.Yeah, that's it.  Stop looking at me! Who said that?!  : )

I do enjoy (if that's the right word) telling people about Myeloma. Of course, most have never heard`of the disease and I feel good about spreading the word. You never know how it my help someone down the line. 

Anyway, what I've noticed is that many of these patients don't know much about their cancers. They can't name their chemotherapy drugs, they know information about treatment in only the most general of terms. Is this normal? Maybe. Are they wrong? NO! I firmly believe that a cancer patient and their caregivers have the right to get through this mess however they can, in whatever way that works for them.   If they want to leave the nuts-and-bolts to the medical experts, that's okay by me!

There are days I wish I could bury my head in the sand and forget about Multiple Myeloma. 

But I'm built differently. I NEED to know what's happening in Myelomaville. I know what drugs I'm taking, how much and why. I know what we're looking for in the tests, I fill in all of my results into Excel spreadsheets, I journal side effects and symptoms. I may not live and die by the numbers (well, maybe in essence, I do!), but I follow them like a hawk. I'm not afraid to ask stupid questions in the myeloma blogs, message boards and listservs. I've probably laid a couple of gems on my esteemed Doctors Barlogie and Nair and they didn't kick me out of the program. And I'm not afraid to write ridiculous things in this blog- but you knew that!

There are countless people working hard to keep me alive, and I thank God for them! I want to be the best team mate that I can possibly be. I want to be informed so that I can help make great decisions. After all, I have the most to gain.

Life is good in Myelomaville - thanks for stopping by.  And thank you for your support! Sean


Lorna said...

Sean, you are not alone in your unrelenting quest for information. (Yes I too have an Excel spreadsheet of Mike's numbers!)
I have noticed how surprised the nursing staff are at our hospital are (OK annoyed most of the time) that we ask so many questions about the treatment being given, I think we're meant to "take it on the chin."

Nick said...

Sean -

I'm glad to find your blog! I am thankful for the times you visit mine and comment. I *OF COURSE* remember you very well and you and I will forever be tied together by the shared experience of our Total Therapy journey. I always enjoyed connecting with you, whether it be on the 7th floor or in the infusion center -- your positivity was and remains inspirational.

I am so glad to hear you are doing well -- let's share maintenance tips! :) The one I can give you is that if you find you're getting leg cramps from the Revlimid, you can take over-the-counter magnesium suppllements. I take one called ZMA (which includes Zinc and some Vitamin B as well) and it works like a charm.

I hope you and your family are well, and I wish you all the best for your continued good health.

Warm wishes from your friend,