We’ve had one hellofa week, and not in a good way. We came to Seattle on Monday night and John was feeling okay. Not great, but good enough to split a hamburger with me on the trip over and drive over the pass. His doctor was impressed with his improved health at his appointment on Tuesday and he seemed to be feeling pretty good so we headed down to Pike Place Market and walked around for about an hour (that’s us on the left). We sat down for lunch and about 1/2 way through it I literally saw him hit a wall. We paid, got in the car, and headed to Queen Anne Hill to our Hotel to check in. I watched him fade before my eyes and when we hit the room he laid down for “a 40 minute nap” and pretty much never got up.
We spent Wednesday in the room with increasing diarrhea and vomiting and me trying to find something I could feed him that would stay down. By Thursday, I called Seattle Cancer Care Alliance and they told me to bring him in. He saw the Oncologist on call and got an infusion of fluids and some prescription anti-nausea meds to take with us. I had to be in Vancouver, B.C. by Thursday night for an all day speaking engagement at a convention on Friday and he wanted to come with me. It was a long drive up that night and once we go to our room, he collapsed on the bed and was pretty much out. He never left the room until we checked out Saturday morning, and then it was in a hotel supplied wheelchair because, after almost 5 days with virtually no food or nutrition, he was too weak to walk.
We had a very long, very challenging drive back to Seattle, including an almost hour-long wait at the border. We arrived back in Seattle and went straight to SCCA for another infusion and to see the doctor on call. His potassium, electrolytes, and sodium were all very low and he was severely dehydrated. At that point, I started posting more regular updates on Facebook.
Here’s that series of updates:
Saturday, July 19th, 2:00 pm Made it to SCCA. John is worse than ever. Very weak, disoriented, and almost panicked he’s so uncomfortable. My mama bear is taking over when we see the physician on call today & we’re not leaving here today unless it’s to go get a feeding tube or check into the hospital. I am not capable of taking care of him when he’s in this condition and we’re not spending one more night like last night.
Saturday, July 19th, 10:00 pm John was admitted to the hospital at around 6:00 tonight. He’s severely dehydrated and they’re still not positive it’s the trial drugs that are causing it so they’re running tests. He’s on fluids and potassium (his levels of that were extremely low) and IV antibiotics. He’s been in and out but mostly asleep since we hit SCCA this afternoon at 2:00 and not real coherent. The plan is to get him hydrated first and then assess the nutrition issue (probably tomorrow). Their hope is that he can start eating on his own once he’s feeling better and won’t need a feeding tube or PIC line.
I’m just relieved that he’s in the hospital and getting the care he needs. I’ve felt so helpless the last few days. His daughter Chelsey Marie is in town and was a huge support today and his twin brother will be here tomorrow. I’ll sleep on a cot next to his bed tonight. Hopefully we’ll both (finally) get some rest. I know I sound like a broken record, but I so appreciate all of your support, prayers, and comments of strength and encouragement. Every single one means so much to me. I’ll post an update once we know more.
Sunday, July 20th, 10:00 am Good morning from the University of Washington Medical Center. I wish I could say there’s been a huge improvement overnight, but unfortunately John is still having very severe cramps and diarrhea. He was up about every hour or so last night but we did manage to get some sleep. He’s still running a fever of over 100 but Tylenol is helping with that. The Oncologist on call was in this morning and said she suspects these are, indeed, side effects from the clinical trial. Once they rule out other infection today they’ll start him on steroids to calm down his colon and try to get him back on track so he can begin to eat. He’s still not feeling like eating anything and the 2 bites of banana he did manage to choke down this morning came back up about an hour later.
It looks like we’ll be here until at least Tuesday and they’ve assured me they won’t discharge him until he’s eating solid food and keeping it down. My main job now is to keep his spirits up. He doesn’t want to lose his spot in this clinical trial and if we can’t get him well, he won’t be able to continue. He’s only had 2 infusions and has 4 more to go, so we’re not even 1/2 way through it. He’s obviously exhausted and feeling defeated. My personal focus is on getting through each hour of the day, one minute at a time. Posting these updates is therapeutic for me and the easiest way to keep everyone up to date on what’s going on.
That said, I’m looking forward to the time when I can post about mundane and humorous stuff about my life again, when every day isn’t a mini drama. I’m definitely longing for the life that cancer has stolen from us. I’m tired and frightened and honestly, just want my boring life back.
Sunday, July 20th, 8:00 pm Steroids started and John is much more awake and alert. The cramps are subsiding but he’s still pretty nauseas. We’re hoping to see a big change over night. He’s still far from back on his feet, but this is the first positive sign we’ve had for almost a week. The “official” diagnosis is auto-immune Colitis brought on by the clinical trial drugs and they hope to be able to control it with steroids. We won’t know what this means for his continued participation in the clinical trail until we meet with his oncologist but at least we’re getting his symptoms under control.
I took a break today while his brother and son were here and went with my step-daughter Chelsey Marie and her future mother-in-law to see her wedding dress, so that was a bright spot in my weekend for sure. It looks like we’re shooting for Wednesday as a discharge day, so please hold that vision for us. We’re both looking forward to getting home but know we need him to be eating and keeping down solids and feeling much more like himself before we can go home. I’ll update this post as I get more information but thought this would be an easy way to keep the updates chronological and easy to read. Thanks for all of your prayers and support. They mean the world to us and I, especially, feel more supported and loved every time I hear from one of you.
Monday, July 21 9:15 am John is much more himself this morning. Talking and even joking with the doctors and nurses. His cramps have slowed way down. They’re doing a shallow endoscopy today and will do a biopsy if they need to. They just want to take a look and make sure everything is okay. We’re still looking at probably Wednesday as a discharge day. He needs to be eating solids and have some of his energy back before we leave. I’m just relieved to have him getting back to himself a bit.
I’ve definitely missed my best friend this past week! Luckily they have great internet here at the hospital and I have my laptop so I’ll be working today as I can and focusing on taking care of him as he moves toward recovery. Thanks for having our back through this and your continued positive thoughts and prayers. They are felt and appreciated.
Tuesday, July 22nd, 10:00 am Things are definitely looking up this morning. Johnny is back to normal, chatting, joking, even feeling like working on his computer a little this morning. His docs have cleared him for discharge later today as long and nothing changes for the worse. IV is disconnected and he’s on oral steroids as of today. He just walked out of the room with the physical therapist to show her he’s strong enough to go home and as they left I heard him say, “Want to hear some farm stories?” We have an appointment with his oncologist Dr. Thompson at Seattle Cancer Care Alliance tomorrow (his routine clinical trial checkup), and then we get to head home.
I am ready to get the heck out of here, sleep in my own bed, hug my kids and my dog, and cook dinner tomorrow night. Fingers crossed!
Tuesday, July 22nd, 4:00 pm Buh-bye University of Washington Medical Center. We’re outta here! Off to SCCA House for the night and home tomorrow after the doctor’s appointment. Can’t wait for that “Welcome to Walla Walla” sign.