It’s been quite a crappy week. Maybe the worst since we started this whole effed up journey just under two years ago. I’ve been sharing on Facebook because it’s easier than coming and writing a post every time I need to update things. Below is a snapshot of the last 8 days or so…
Thursday, October 1st, 2015
We got really bad news on John today. He has 3 separate tumors in his small intestine. They will need to remove them all ASAP because if they rupture it would be life threatening. He’s having a blood transfusion tomorrow morning because his platelets are so low and he’s anemic. Then he has an appointment in Seattle with a surgical oncologist next Tuesday afternoon. Since there are no surgeons in Walla Walla who could help him in the event of an emergency, we’ve decided to head to Seattle on Saturday and stay with his brother in Issaquah so we are close to University of Washington medical center. Better safe then sorry. We’ll just hang out and hope for the best. We’re hopeful that the surgery will happen late next week if not sooner.
This will be a big surgery and we have no idea what the recovery will look like but expect it to be at least a week to 10 days.
He’s in quite a bit of discomfort and is very weak and tired. It’s been a challenging week for both of us. This also puts off at best and totally eliminates him at worst from the trial at NIH. It remains to be seen if he will still be a candidate for that program but we’re still hopeful that once he’s healed up and this problem is solved they’ll let him in.
Thanks in advance for every positive thought and prayer you can spare. We could sure use a miracle now. #lovetrumpscancer
Saturday, October 3rd
Packing up for an indefinite stay in Seattle for John’s upcoming surgery (could be 4 days, could be 3 weeks). I have a hard time packing for a weekend away because my OCD kicks in and I start to panic that I’m forgetting something so I take EVERYTHING. I’m up to 8 bags and a huge stack of hanging clothes. We’ll have a very full car but at least I’ll feel like I have what I need to manage. Not gonna lie…my stress level is a tiny bit elevated this morning (read that word “tiny” with A LOT of sarcasm). #occasionallyocd #plannerwithoutaplan
Monday, October 5th
Hanging out in Issaquah, about 30 minutes from the University of Washington Medical Center at John‘s brother’s house, waiting until tomorrow afternoon to see the surgeon and find out when we can give these tumors in his small intestine their eviction notice. We had a fairly quiet weekend, including brunch with our sweet friends Leigh Ann & Jerry K Clark yesterday. We appreciate all of the messages of love and support we received over the weekend and we’ll update you all tomorrow as soon as we know what the plan is. Thanks so much for your continued prayers. They mean the world to us.#lovetrumpscancer
Tuesday, October 6th
Heading back to Walla Walla with a lot less hope and what feels like dwindling options. We saw the surgical oncologist this afternoon. The news is not good. There are many more tumors than we thought & no way to tell which one is causing the bleeding. Bottom line, without more information he can’t operate. We are going home & John will have an endoscopy first and then another test to see if they can find the bleed. Even if they do, if it’s numerous bleeders surgery wouldn’t solve the problem because the tumors are too spread out in his small intestine. The odds that he’ll be able to do the NIH study are getting smaller & smaller. We’re not sure what our next move is beyond these tests at this point.
Wednesday, October 7th
I slept about 4 hours last night and finally gave up and got up around 4:30 this morning. It feels like my life if full of nothing but unknowns today, but in the midst of all of this, there is one thing I absolutely know for certain. I am surrounded by almost unfathomable love and support, from dear friends old and new and friends I’ve never met.
This morning that is making more of a difference then I can begin to communicate. Thank you, thank you, thank you. I do not know where I would be right now without that support. #lovetrumpscancer