This is Michele. I had met several of you at last year's Pat's Myeloma Beach Party. Pat is still pretty weak. He is definitely looking forward to feeling like himself again. Pat is thankful for all of the kind words, thoughts and prayers all of you are sending and is hoping to be able to
No kind volunteer to step up and write for me today. One advantage to being an inpatient: I didn't need caregivers over difficult to staff Halloween weekend. That's fine, but only works if there aren't any complications. I endured a major extra hurdle this summer; a nasty VRE requiring a month on IV antibiotics. Now
Hello. I am Mason, a volunteer at the hospital, and I have had the recent pleasure of meeting Pat. Pat is doing alright, but he is feeling very weak and still battling some GI issues. Pat is still alert and friendly as always, and of course he wanted everyone to know he is doing alright.
Yesterday may well have been the worst day of my life. I'm guessing anyone that has undergone an auto or allo has had one or more of these. How the heck did we make it to the other side? It started Sunday afternoon. GI issues run amok. I was still able to eat, but the
Why am I fighting so hard to stay alive and get home? Yes, I want to help my fellow patients. I still feel I have so much to do. Life is hard right now. But it's precious. I miss my wife. I miss my life! Just between you and me, want to know why I
Once or twice a week I get an invitation to read and review a book. Most are about topics that don't apply to us. But I was intrigued by Dr. Liza Leal's new book, Live Well with Chronic Pain; a Guide to Taking the First Steps. Her publisher was kind enough to send me a
I'm loaded up with all 8 million+ stem cells I had left. Some in storage, some from this summer's collection. This picture features the nurse in charge, Hanson, and me: As you can see, my hair is just starting to grow back. An outward reminder of the irony of it all. As I write this,
I ran across this comprehensive article about the emergence of new myeloma immunotherapies on OncLive.com over the weekend. It features a who's who of myeloma experts. I'm having some technical difficulties posting the article. Remember Dr. Noopur Raje? She was kind enough to fly down to speak at this year's Pat's Myeloma Beach Party. Dr.
I put this together Tuesday evening. Last time I'll be smiling like this for a while! Two hours sucking on ice. Mmmm. Sister Joan was kind enough to bring some flavored ice pops to mix in for a change of pace. Still feeling OK but combination of all four chemo agents today wearing me down.
Second dose of melphalan this morning. But before I start sucking ice let's have some fun. A few more serious pictures first. Yesterday I wrote: I’m staring up at the extra large blood count chart on the bulletin board at the foot of my bed. A sobering reminder about what I’ll be facing soon. My
Here's an update about how I'm doing. I'm feeling OK, but I've been a bit scattered; I'm having trouble focusing. One reason? Check out all these pills I took last night at 5 PM--just one of four different cups of fun: It isn't the number of pills; I take this many and more at home.
Pattie reports that our beloved dog, Finnegan, feels the same way about me! Apparently he lays at the front door, forlorn, waiting for me to come home. Sorry, Finnegan; it's going to be a long wait. But if things go as well as we all hope, I'll be home with you for a good long
A number of you have already contributed to help CrowdCare Foundation fund a pair of cutting edge T cell trials in Germany and John Hopkins in Baltimore. THANK YOU! For those of you on-the-fence, I wanted to share some good news. A friend has agreed to match any contribution—dollar for dollar—up to a total of
I met with Dr. Tricot this morning for my pre-transplant check. As expected, I'm good to go. I wasn't expecting such encouraging, eye-opening test results. The report from yesterday's PET scan still aren't available online. But Dr. Tricot had them. After he carefully examined me and double checked my numbers, Dr. Tricot flashed a big
Ready or not, I'm back in Iowa City, preparing to undergo my second modified stem cell transplant in less than four months. I was at the University of Iowa Cancer Center all day for tests. It was more grueling than I expected. Except for almost an hour wait, my second PET scan in two months
I'm often said our readers are my best resource. Early reports about the new immunotherapy, daratumumab, have been good. Mike, from North Carolina, recently enrolled in a dara trial. He emailed me about how great it's working for him and agreed to share an email he sent his friends, trumpeting the early results. Here's a
I saw my radiation oncologist today. Dr. Perkins is confident he can mop up any active lesions the second transplant doesn't get. Amazing what they can do with radiation these days. In some cases, Dr. Perkins said they can radiate skull lesions without the radiation ever even touching the patient's brain. If needed, their practice
I had a chance to see myeloma patient and CrowdCare Foundation co-founder, Jenny Ahlstrom, in Boston last week. She made an impassioned plea to anyone that would listen to help her raise money to pay for two cutting edge T cell clinical trials; one in the U.S. and one in Germany. Here's information about the
Another beautiful fall day in October. Big football Saturday. Let's kick things off (pun intended) with more pictures from last week's game and tailgate. I write a lot about my good friend, fellow myeloma survivor and the host of our Myeloma Cure Panel broadcasts, Gary Petersen. Gary and I spent much of the week together
More pictures from last weekend? Why not? Tomorrow is another college football Saturday. I'll share more then. But first I wanted to follow up on a very serious subject: reader responses to Tuesday's post, pleading for emotional help and support for me and my fellow myeloma patients and caregivers: Myeloma patients need emotional support