hmmmmm

Humuhumunukunukuapuaa Now that's a great name.

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Vacation Nevertheless

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In April, we had planned a trip to Florida. For numerous reasons, including my recent diagnosis, we couldn't go. We had taken a trip there exactly one year prior. That trip was cut short as my mother had become very ill and entered hospice care in my home. But we recently rescheduled April's bamboozled travels. And, for the past several weeks, I have been very skillfully planning my execution of all that needed doing to pull it off this time. PSC makes a person tired. All. The. Time. But we got it all done, and we left the house at 4AM yesterday. I drove some of the way in the morning, but my husband did most of it. Thankfully. He and my son understand how I am and what this does to me. And they didn't complain about my falling asleep for much of the last leg of the drive. It looked like sleeping, but it felt like a cross between drunk, hungover, and dead. Other people with this disease know what I mean.    We arrived at this beautiful little rental home last evening....
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The Very Sad Thing About Cancer

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  I t is about 2:20 AM on Saturday before Easter. I tried sleeping, but cannot. I have a lot of discomfort, cancer and treatment-related discomfort. I also realized that I no longer have a fingerprint on the finger I use to sign into my phone and many accounts. I was very close to getting locked out of my own phone just to get onto this site. Folfox, the chemo I am receiving, can damage the skin on a person's hands and feet. Mine was peeling badly a week ago. Now it seems that, though healed, the ridges are so shallow that they do not read anymore. Hopefully they will return. Otherwise I have unintentionally achieved what criminals through the years have gone through great lengths to accomplish. Oy. Well, on to the idea that is the reason for this post: a man I knew only from Facebook died a few days ago. Like me, he was 54. Like me, he had cholangiocarcinoma. Like me, he was receiving chemo through a port. He commented that it looked like we had the same "set up" when I...
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66

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It is 4:50AM. I have hellacious acid reflux. I have consumed too many antacids. My rem ai ning option is to sit upright for a while with a cup of tea. I think it is helping. Chemo yesterday. I am now seeing a pattern to the first day of a cycle: i ncreasing fatigue and headache on the way home. Terrible headache and fatigue by the time we get home. Now reflux which is intense even for a seasoned GERD veteran like me. While lying in bed, it occurred to me that my body feels a bit like Route 66. Not the famous one. The infamous one. People who live near DC will know what I am talking about. Bill and I traverse this road to reach Georgetown University Hospital, where I am receiving treatment. I have lived in the DC area for decades, and I have never seen 66 not under construction. I am sure I never will. But, there is presently a new level of chaos which seems to have no limits. Early in the mornings, on our 90-minute drives (on good days), I am typically asleep by the time we are a...
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