I updated this post June 25th. Give it another look…
I’ve now been blogging over seven years. They all didn’t transfer over when my savvy tech volunteer, Rob, switched our hosting platform from Blogger to WordPress four years ago.
Pattie and I started HelpWithCancer.org first. I’ve let it slip lately, but still post there once or twice a week.
Yes, I’ve been writing about myeloma a long time. So long I’ve decided to set several books I started years ago aside to focus on finishing another book I’ve been working on: Living Longer with Multiple Myeloma. Get it? A continuation and play on words from the title of my first book, Living with Multiple Myeloma.
My point: I’ve learned so much and have a lot to share. If only some of our myeloma docs had spent as much time corresponding with patients and listening carefully to their comments and complaints. We’d all be better off, right? I was speaking to several oncology nurses the other day that agreed. Hem/oncs are focused on keeping us alive. Even those interested in helping to improve our quality of life are often under trained in that area. And our primary’s? Once they hear we have cancer, most throw their hands up and defer to our medical oncologist and/or specialist. Hear that sound? That’s us falling between the cracks.
In Iowa, I plan to spend every spare, conscious, not-too-nauseous moment, working on this next book. I’m determined to finish it for distribution this fall. I take these deadlines seriously; myeloma time, you know!
None of my books threaten the New York Times Best seller list. I’ve sold just under 5,000 books since I started writing my myeloma patient perspective series. But I’ve also given a large number of them away. The important thing is getting helpful information into the hands of my fellow patients and caregivers that need it. Year in and year out, Pattie and I lose money distributing books. Doesn’t bother me a bit.
I’m currently updating New Multiple Myeloma Therapies from a Patient’s Perspective, and Financial Aid for Myeloma Patients and Caregivers. Seems to be more need for that last book these days.
Unfortunately, cancer and financial stress always seem to go hand-in-hand. The good news? Myeloma patients are eligible for more financial help than for any other cancer. My book helps position readers to best take advantage of financial breaks.
My best seller? Stem Cell Transplants from a Patient’s Perspective, where I interview dozens of auto and allo stem cell transplant patients during and after treatment. What to bring and not to bring? What do they wish they knew now that they didn’t know then? I updated this book late last year. Better give it a quick once over before heading to Iowa for my second autologous stem cell transplant.
I need to finish the new drafts before I can get back to work on book number five. But I’ll get there. What drives me? I love you guys! My life is all about helping all of us improve our qualify of life. My new book will be jammed packed full of tips–many of them suggested by our readers. The first draft is almost complete; part of it has already made it through editing. I can’t wait to pull it all together, pick a cover and get it done!
It’s still exciting for me to be alive; that’s why I’m gambling and seeking a salvage transplant with Dr. Tricot in Iowa. I just have a feeling the guy is on to something: “Pat, you were never treated appropriately.” Back to basics. I like it! Plenty of time to play guinea pig and help other researchers test high tech T cell and nano technological innovations later–I’ll give ’em a couple years to get the bugs out!
Feel good and keep smiling! Pat