Bak skyene er himmelen alltid blå

Jenny here. It's been a busy few days. I spent all but one night this week at the hospital, so as you can imagine, I'm not exactly well rested but I'm getting better at living out of a suitcase and sleeping through vitals checks.  But there is no place like home. The bonus is that my job is only 15 minutes from the hospital so it's convenient. Add in a couple quick showers at my sisters and it was a week of fewer road hours than I've had in a long time.

Thursday I took 2 hours and shopped for "doggy proofing" items and dropped off the supplies at home (Wil can't really have contact with the animals, so for now there will be gated off areas to keep everyone apart. This is not going to be easy for anyone!).  Driving back I had my sunroof open, enjoying the light and warm air. I thought about all the dark cold nights I drove back and forth to UTSW in December. Heavy hearted. Crying most of the way home. Now, there is light. In more ways than just the sunshine. All week staff commented about the "night and day" difference they see in Wil. He is so much stronger now. We really are in "day" now! And we know it in such an intimate way because of the night we crawled through.

The last 90 days have expanded my heart space for sure. Welcoming in the entire onslaught of emotions, even the darkness, has made this little slice of light that much more remarkable.

It made me think of my favorite, beloved Norwegian saying:
Bak skyene er himmelen alltid blå
(Behind the clouds the sky is always blue).

I've held on to the belief that day is just around the way, that dawn will come and the clouds will part. It sure is nice to experience the sun and blue sky when it arrives. I'm not sure which direction our story will  take next so I'm trying to just soak in the rays.

Wil made it through his first round of cocktail A of the new chemo protocol (Hyper-CVAD), which included about 21 clock hours of chemo over 4 days, all done through his central line except one spinal tap chemo. He was discharged today at 5:00pm and now, close to midnight, after 3 episodes of Dexter and spaghetti, he is fast asleep.

Physical wise, his body is holding up. That liver is still looking good!  He came home with 10 meds (whew copays!) varying from anitfungal, antibiotic, anti- nausea, liver support, etc. Even with the meds for the side effects, he has started having dry heaves at meal times. Food is tasting funny again and he is tired. But overall he is doing well and still getting stronger. The docs even gave the green light to outpatient PT, so we may be able to return to his last PT to continue, with mask and gloves of course.

The staff noted a flat affect today, their only concern, of which I'm well aware. He has been very anxious again the last 2 days about leaving the hospital but, instead of panic attacks, he shuts down. My guy, the one and only person I know who would like to be admitted for 6 months. The hospital is such a controlled environment for him. So the thought of coming home, and being outside with germs, around more people, pets, etc, had him worried. One nurse tried to remind him a hospital is a much worse place to be in terms of germs. Today, thankfully, he seems to be working through it. He wants to be home. But he's been scared to be sick at home. And we both know it's just a matter of time until the major side effects hit (probably betweenTuesday to Friday of next week). I think once we get through an initial round and it *fingers crossed* goes well he will have more peace.

Monday we will return to the outpatient clinic for follow up. Once his immune system bottoms out and rebuilds he will be readmitted to start round one cocktail B (about 16 days from now). Life, for the time being, will be in 3 week stretches. I'm feeling awe struck that we are even at this place because back in December there were uncertainties if he could tolerate chemo at all. While I know we will keep at the fight no matter what treatment looks like, the thought of no chemo would be crushing. Chemo with all it's toxins and side effects is a risk I'm grateful he can take.

Much love...Bak skyene er himmelen alltid blå.