In review, I had Melphalan (strong chemotherapy) on June 9-10. Then my stem cells were re infused on the 12th and 13th. Typically, this means that this week and next are the hardest.
Everything is going according to the plan. That doesn’t make me feel any better as I feel bad, very bad. I’ve had profuse diarrhea for 8 days as well as well as background nausea and vomiting. Except for my abdominal cramps, and blisters on my feet from walking, I don’t have a lot of pain.
Speaking of blisters, they are the results of trying to walk 3 miles per day, here on the floor. I started out strong, 5 miles per day for the first two weeks, yesterday I walked only 2/10s of a mile. But I did complete a Marathon the first week and am now at 29 miles. But the walking is becoming more and more difficult.
Yesterday was my worst day so far. I’m feeling a little better today, but it would be premature to call this a trend or turnaround point.
Last night was an eventful time. First, I had a temperature of 100.1 F. Fever, in someone like me, with virtually no bone marrow, is taken very seriously. I was awake for the first half of the night as nurses were in and out of my room setting up the infection work up, blood, urine, and stool cultures. Those are all pending as I type. I was treated, preemptively with the IV antibiotics, cefepime.
About the time I was drifting back off to sleep, in between episodes of diarrhea, the nurse re-entered the room to report that my platelets had bottomed out and now I would have my third infusion of blood products (platelets). Soon after this infusion started, I went into rigors (severe chills). So, this response to the platelets launched the next phase of work up, taking me up to daylight.
Lastly, today my hair started to fall out in big chunks. It was inescapable.
Denise has been here, at my side, for the whole thing.
J. Michael Jones 
14 responses to “UPDATE:6/21/19- Day 51 of a 100 Day Plan”
So sorry that things are so miserable. Praying is the most I can do. Praying for both of you, for strength and healing.
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I have no words other than to say I pray for both of you daily, and I am grateful for this update that tells me you are alive and kickin’.
Not to mention that day 51 leaves less than 50 to go. Keep up the good fight!
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So glad you have Denise to be by your side–the whole thing. That stands out as much as anything. A great blessing in the toughest of times. Still praying for you both. DK
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Keeping you in our thoughts and prayers while visiting Andrew and Liz here in Alaska❤️
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So good to hear from you as I’ve been thinking about you all week! All my best wishes. May you start to feel better soon.
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hang in there, we are all rooting for you on the other side of isolation. And the hair will grow back, some guys haven’t had that hope since high school
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You are in my thoughts and prayers constantly. So glad Denise is with you as you fight this horrible disease! Each of your systems are so heartbreaking Mike and a real look into each step of the battle you are fighting. May remission come soon and all your systems fade into the past!!! 🙏🙏🌞🌞🌞🌞🌞
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Thanks for letting us know where you are at in the process. Sounds horrible, you are such a strong person and some day this will all be behind you
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Hugs and more prays for both of you. I’m so sorry you have to go through this.
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Mornin Mike! Way to go, but blisters? Oh no, well, your body may just need to be at rest for a bit…you are one tough cookie! That’s what a friend told me a few weeks ago. I still look at it with the belief I’m just that.
Riley has had both of his Teca surgeries. First the right ear canal removed, complications because of infection that began in his bolla, a bowl shaped space at the bottom of the ear canal, just under the ear drum. Two types of bacteria. Then one started in part of the incision, more running to Stanwood.
Two weeks ago, the left ear was done. I was try ing to give him a break in between because the third antibiotic he was given for the infected incision was a big bad one. I almost lost him one day.
So far with this ear, the night of the surgery, a hematoma burst. Oye vey! I asked why a drain hadn’t been put in.
That was something to take care of, by myself in the wee hours. Needed more hands. Some to hold poor Riley, someone to gather up supplies to patch him up. And or maybe someone to grab cleaning things and do it. He was a scared mess. So, in the end I had stuff strewn from hell to breakfast and bloody rags and water in sink…..
Got him patched up and then the next evening he shook his head and took out the sutures that came were replaced and then some. Back to Stanwood, this was my 3rd. trip there and back again to pick him up. This time.Next, most of the sutures just wouldn’t hold. That was Friday, so it was an open wound from one side of ear flap to the other ,deep and gaping. Mind you, I kept gauze sponges in between ear flap and head, wrapped up with an ace bandage around his head since the start of this deal. Cone of shame as well. When I took him back the next Wednesday (the specialty surgeon isn’t part of the staff there)had to wait, then another procedure. Warm lavage wash, remove remaing sutures and tape. It was decide to leave it to heal open. It will be 5-6 more weeks. Argh! He stopped shaking his head as much when I ditched the cone yesterday. It’s on stand by. There, now not as many drugs…
Come hell or high water, he WILL be restored to good health! Phew!
That’s my story and I’m stickin to it.
See ya round the bend,Mike!
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Mike, I am so sorry you are having a rough period of time, it really must be miserable. My good friend is going through breast cancer treatments and is also experiencing rough days. I am learning so much more about Cancer and the treatments available. It is really quite remarkable, all the technology and medical knowledge to try and help patients. I have no doubt you will win this war..hey..you are more than halfway through. 🙂 Keep up your positive thoughts and affirmations, it is so important. I’m happy to know you are blessed by having a loving partner who is diligent at staying by your side. It can make all the difference. I really feel like you are doing amazing so far! Thank you for the update..you’ve been on my mind. Many blessings, prayers and hopefulness are here for you!
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I am so sad that you and Denise are going through this!! I so wish I could take it all away from you! Sending love and hugs !
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Evenin Mike, Riley I are in Causland Park, where he has a bush that he very reverently approaches, then gentley going under the leaves, he stands for quite some time while I wait, sometimes gently rocking back and forth. He goes to others at other locations. Often cedars are a fave. I think it’s his spiritual practice. Thought you might enjoy hearing about it, as I wait patiently under the trees and listen to the park and neighborhood sounds. Blessed be, peace
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Riley rocking back and forth, on my!
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