Sunday, February 4, 2024


Having Dan in the hospital triggers my memories and anxiety from his longest hospital stay—when he was diagnosed with stage 4 lung cancer. It has been 9 years but even today I still experience a sense of ptsd with the sights and sounds; times of indecision about where to be (with Dan, Raine, at work, home, etc.) moments waiting for answers; and the roller coaster that is the revolving door of doctors and nurses with different opinions and strategies. This time there is a problem with his colon.

First, let me share that biopsies came back negative for cancer. During a colonoscopy they also determined there were no lesions or masses (tumors). There was a concern about the inability of the camera to reach his traverse colon to check for something there, but after six days here he is now passing loose, watery stool and they consider that a success and decided not to do a PET. What we know for sure is that Alectinib is still working for him.

When it isn't cancer, I feel adrift in the pool of my ptsd. I mentally amped myself up and had pre-conversations in my head about it being cancer. I obsessed over whether or not it would have been his cancer metasticizing to the colon or a brand-spankin' new secondary cancer? What would the universe deliver to us as another lightning strike? I hovered over chat boxes in ALK lung cancer groups waiting to ask opinions and feedback. I cried during my drives to the hospital and back. Sometimes I googled things I shouldn't. 

Afterward, I feel foolish. It feels unfair to go through it all but that is what we do. We endure and we move on. In the process, we get to feel the deep love of ourselves for each other and the generous support of those who care about us. 

This all began when he was constipated for three weeks. We did everything possible to alleviate the pain and get his bowels moving. I gave him 4 enemas in 24 hours at one point! Finally the pain was so intense, he went to the ER. He was home the next day only to return again and be admitted for severe constipation. The past week he suffered having a nasogastric tube down his nose and throat to suction fluid and gas from his distended stomach. There was even poop getting backed up into his stomach and emptying into a big bucket behind his bed. He couldn't have food--just sips of water with pills. He was eating ice chips until he vomited and then he couldn't even do that. 

We saw some progress overnight Thursday to Friday with him finally passing gas (imagine not being able to fart for a week!) Then his tube came out and they let him have broth. The pain remains and he has tried different painkillers with neccessary accompanying laxatives. After 2 gallons of laxative last night, he has had 6 bouts of loose and watery stool. They introduced soft foods today.

He has enjoyed Raine's visits, that first taste of broth, laughing with me and Char, and taking walks. I enjoyed a 45 minute massage yesterday when I took some time for self-care and my habit of picking up cold pressed juice, coffee, and avocado toast at a cafe nearby every day. Other than that, it has been really tough. I took a shower today after a week and it made me feel a little less strung out.

Like I said, what we do know at this point is that it is not cancer. We have narrowed the list to at least 2 ulcers and what they said in a scan appears to be consistent with adynamic ileus, which is like a loss of movement in the intestine. Of course, this is what I think right now. I don't know what tomorrow holds. The doctors could tell me something different because that has been happening. And we still don't know what caused this, but talk of discharge is happening. I'll keep you posted.

Thank you for the Doordash gift cards, Instacart deliveries, thoughts, prayers, positive vibes, help with Raine and my dad, and all the support that comforts us!

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