Monday, October 20

Back to Mayo

Heading back up to Mayo this morning. It will be a much shorter trip this time. Will be spending nine hours in a chemo room tomorrow, but we'll have internet, a tv, and each other so we'll be fine. Steve feels bad that I will be spending my birthday this way, but I feel honored to be there to support him. There is joy in doing what we are meant to do.

Steve has been managing well and treating the side-effects to keep his electrolytes, hydration, and energy balanced. He doesn't complain, but I do get bossy pushing fluids and naps...that's a balance I need to work on. (laugh)

Thank you for your continued prayers and support. I haven't been good about answering emails, but know that we love and appreciate you and everything you write. Now go out and do something today that makes someone else feel loved. Until later... Jenn

Friday, October 3

The First 24 Hours

The first 24 hours of BBI406 (I mistakenly posted this as BB1406 earlier) went pretty well. There were some digestion issues, but no nausea until this morning and that seemed to pass quickly. This is just one of the drugs Steve will be taking...he'll start the next one in four days. We will need to get used to the dietary requirements that come with the drugs. He can't eat for an hour before or 2 hours after the pill. This isn't a big deal unless one wakes up at 8 am, has to take the pill at 8:30 and breakfast closes at 9. Not a big deal...just waited a bit and went down to Caribou Coffee in the lobby. Steve was a bit too tired to go down himself this morning, but that could be due to happenings during the night.

I honestly don't recall a hotel stay where I haven't flooded the bathroom. Usually it's due to the tub or shower, this time it was the toilet. I called out at 3 am for help (yes, I know, I'm an adult, but still, when a toilet is flooding one panics) and got Steve up. We called for a plunger and then Steve went out hunting. All was taken care of quickly and the many towels left in the room came in handy. Fortunately (and I feel the need to mention this), it was just water and nothing terribly yucky. So with that and then Steve needing to get up often due to digestive issues, he didn't get solid sleep. Hard to tell if it's chemo fatigue or just wackiness that has him napping at 11 am.

I'm ready to step up my caretaking today. We seem to have two routines...one when Steve feels good and does things for me and one where he doesn't feel good and I do things for him. Of course there is overlap...we often do things for one another, but coffee runs, lunch runs, administrative duties, etc. bounce toward me more during chemo. I'm fine with this and happy to do my part to keep our lifestyle as stable as possible. I think we have the two extremes more because of the cancer treatments. We have a very equal relationship and have found a good balance. He knows he won't always feel good so kind of spoils me when he does. I don't take this for granted.

Anyway...this is longer post than usual about nothing much of nothing. (laugh) While I'm not isolated emotionally, we kind of are physically so facebook helps alleviate that. Thanks for reading this far...or if you just skipped to the end, thanks for reading this. (smile) More tomorrow. Have wonderful day everyone!

Thursday, October 2

Starting BB1608

Today Steve starts BB1608, which is the trial drug and one of two he will be taking for treatment. They start one drug at a time to gauge side-effects. Kind of a strange feeling to take a medication and then wait to see what will happen, but Steve doesn't seem phased by it. The other drug is called regorafenib and he'll start it in five days. This is a drug used widely in the UK, but newly approved in the US. On it's own, it wasn't a good match for Steve, but in combination with the BB1608, it is shown to be very effective. The regorafenib alone is $1,600 a month and that's after insurance. We are fortunate to have wonderful insurance and have met our deductible so no copays are left to pay. Steve's employer is Van Meter and we encourage anyone in need of electrical supply to visit them as they have been beyond wonderful to us.
The study involves a lot of documentation. Steve has four forms that he needs to fill out to monitor and document his side-effects. He's not overwhelmed by this at all and told me that I don't need to worry about the paperwork. I tend to jump in and want to over-care for him, but have learned boundaries through all this and know not to treat him like a child...most of the time. We got laughing last night as we talked about the different things he has to document. I told him that I was going to keep my own documentation chart noting things such as flatulence, corny jokes, and excessive hugging. He didn't think they'd be interested in my research, but I will continue to verbally document things using a time code and eye roll. (smile)
Thank you for your prayers and support. Keep in touch as we look forward to your emails, messages, phone calls (thank you to Audrey for calling all the way from the Netherlands!), and just general friendship and love. Have a wonderful day...more later!

Wednesday, October 1

Arrived at Mayo

Steve got all his tests done yesterday and then after a strange lunch (people should not discuss personal medical conditions in restaurants while on speaker phone...yuck) and a huge hotel mix up (tears were shed), we finally checked into a lovely junior suite. The room is very comfortable with a separate seating area with kitchenette, sofa, and chair divided off from the bedroom by a half wall. If you ever come to Mayo, know that there is a big difference between the Kahler Grand and the Kahler Inn and Suites. Nothing grand about the Grand.

Today Steve has one appointment to talk to the doctors and then we'll have the rest of the day free. Thank you for all your prayers and good wishes. Coming back to the computer to see emails, messages, and posts is HUGE for us. Never ever think you're sending too much...we love to hear from you and it keeps us connected in a very emotionally fulfilling way.

I guess maybe that's just a life lesson for everyone. I sometimes hesitate to email or message people because I don't want to bother them or be a pest. Is reaching out really ever a bother? We're meant to be connected...no one can live fully in a solitary existence. Let's challenge each other to be open, accepting, inclusive, and always happy to hear from one another. I can easily do my part and you have our contact info. (smile)