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Monthly Archives: October 2015

29 10, 2015

Off the grid

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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

28 10, 2015

Complications: Please don’t worry


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.

25 10, 2015

Will to live: Why I want to go home

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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

24 10, 2015

Book Review: Living Well with Chronic Pain


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

21 10, 2015

Chemo today, Day Zero tomorrow

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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.

20 10, 2015


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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

18 10, 2015

Hectic first day glitches

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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

17 10, 2015

Thank you rant

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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

16 10, 2015

Great news!

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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

15 10, 2015

My tandem transplant schedule

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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

14 10, 2015

Reader celebrating great response to daratumumab

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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

12 10, 2015

We can’t wait for a cure!

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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