Tuesday, March 26, 2024


The BEST NEWS is that Dan is home.

14 days in the hospital was a new record. Now he is adjusting to life at home with a fancy hospital bed situation, weekly occupational therapy, physical therapy, and nurse care, many medications to take, and a pretty sweet walker that is actually tall enough for him. He remains in pain but it is manageable with a whole lot of painkillers and (cross your fingers) a medical air mattress we are getting. I don't know what part of the BED SORE WOUND and PAIN FROM SPINAL TUMORS isn't clear enough in the notes for insurance, but I am confident it will get worked out because this is Dan. And the Universe loves Dan.



He has completed his 10 rounds of radiation! For that, he recieved Little Debbie's Easter cakes. He was so excited. He beamed at me and smelled the box. He was so brave. He told me he would mostly close his eyes, say to himself a mantra "You can do this. You are medicated. It's only 15 minutes. You can do this," over and over again. Despite all of the painkillers, he still needs an additional special opiate dose right before the procedure so that he can lay flat on his back. This was a delicate situation with timing and sometimes it didn't work out very well. Instead of rescheduling, Dan laid down and stayed still, clenching his body, grunting, crying, and at times yelling out. I can't express to you how much he just wanted to get it done. So he got it done. It is my hope of all hopes that the radiation works and his literal sweat and tears will be worth the sweetest, lightest ease of pain in the coming weeks.    


The HARD NEWS is that a PET scan revealed he has additional cancer spreading in his body.

Sparks of cyan, red, blue, magenta, yellow, neon green. 
In a body of black.

I really didn't expect everything to light up again. It was all my mind could do to process the results of the three separate MRIs (abdomen, lumbar, and thoracic): cancer active again in and around the spine. It was the moment that we knew would occur in the future of our cancer journey--like a switch getting flipped--I just expected it to be gradual. However all of the cancer showed up as an aggressive spread of color. The results were confusing to me at first. How did they know what was necrotic tissue and what was active cancer? How could they tell the difference? It is the presence of those colors--showing the high metabolic rate of activity. 

  1. 1.
    the condition in which things are happening or being done.

So it is happening--this sort of very diligent production--in his left lung, scattered lymph nodes, and bones like the ribs and pelvis. They took a biopsy from a tumor in a lymph node in his neck, and it had necrotic tissue in the center. The new cancer had grown around the old. If all of this has grown, what about those quieted lesions in that soft, nervous tissue of his brain? I have scanxiety for his MRI next week. I have biopsy-xiety, if that could be a thing, too, for results that will tell us the genomic driver of the cancer. 

[NERDY THINGS: That will tell us if the situation is that the Alsenca (chemo-in-a-pill) is no longer working for his ALK cancer or the cancer mutated. If it is still the ALK gene, we have another medication like Alcensa to try and then some. These "nibs" as we call them, have lined up in the treatment world since Dan was first diagnosed: Loratinib, or Crizotinib, or if it fails, Ceritinib. If it fails, Entrectinib. And so on. In a chat group I found another peson on Brigatinib. Many people are in clinical trials using future nibs. If his cancer mutated, we will need to target therapy toward a new gene. Some known genes for lung cancer are ROS1, BRAF, KRAS, EGFR, MET, for example. Each of these may or may not have targeted medicines on the market or in clinical trials.]



Help moving furniture to get Dan's bed set up. Jim and Char visiting. Surprise candy on my desk at work. An elementary school friend giving me flowers in the parking lot at Kroger. Stormy happy to have his person home. Home cooked meals! A surprise visit from Doug. Help with chores and errands. Surprise boxes of goodness in the mail--everything from fancy beard soap to a bunch of candy that Raine devours. Sipping wine from Oregon. Amy, who also surprised us visiting from SC. Kind and generous donations.

Every single one of all of your Messages. Comments. Shares. Emails. Letters. Cards. Texts. 

All the good vibes in the Universe. We feel it. We feel it most when we hug each other and Raine. It's all the same!

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