Yesterday a blustery nor'easter pounded us here on Fernandina Beach with high winds and flooding rain, One moment I felt fine, the next weak and gagging back dry heaves--or I found myself racing from one toilet or another trying to stay in front of seemingly endless diarrhea. So much to do: unpack, drain the pool,
My left hip is biopsied and we're waiting for the results. Regardless, Pattie and I are flying home today as planned. Most folks worry about whether they turned off the lights, forgot the tickets or left the toaster plugged in after they leave for the airport. Me? I'm back on the 7th floor for an
Having undergone yet another stem cell transplant, I've learned one thing you can count on: expect complications. I know there are some college football fans out there. Every Saturday during the season, ESPN runs a two hour pregame show, College Gameday. The show's been on for thirty years or so. One of the original cast
I was just emerging from a five day long, near coma on Halloween. That didn't stop my sister, Joan, from decorating my room top to bottom: These skeletons are clearly visible to the main hallway; Joan has been complimented for her spooky efforts to help distract me and others from our unpleasant captivity. Here's a
Remember the good news that Mike from North Carolina shared with us last month? Reader celebrating great response to daratumumab Posted on October 14 2015 | 1,915 views Here's an update. Today I will be at the UNC Cancer Hospital in Chapel Hill all day for infusion #9 of daratumumab, an experimental antibody drug that
Remember being a teenager and getting yelled at for staying in the shower too long? Or dealing with a son or granddaughter for using up all of the hot water? Check this out: I can finally smile! It was an excruciating week. For three or for long days I was a mess; all drugged up,
Doing so much better today! The thickening of my stomach wall is still there, but my fever is gone, and antibiotics seem to be working. I'm all too aware of how many of you have also lived through the "worst days of your lives." I can't stay focused for very long without discomfort. So indulge
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
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 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