7/25/2019 posted in an untimely manner

Good morning, just a bit of an update of the ongoing drama called life. That sounds much more dramatic than this posting will be but thought it’d get your attention.

Doctor appointment yesterday (after needle inserted into his port; labs were drawn). Since Dr Z had already told us David’s scan was stable, we knew we’d get that news and a chance to look at the last 3 CT scans; with Dr Z pointing out the spots we can actually see some of what he is talking about. The confirmation on the oral chemo pills was not quite like we remember. However, when I looked at the notes I had taken on the last appointment, that is exactly what he said. 6 sessions of IV chemo before the oral pills and David is at 4. A session is a month which is chemo every other week for David.  David was very disappointed. The oral meds will have side effects but supposedly they will not be as bad. It will also free us up a bit with not having to go to the hospital for labs and the next day chemo. He will still need to do labs and appointments but more flexibility. I was disappointed to learn there is a bit of a cost associated with pills, they fall under a different category. Who knew? And now I guess I’ll have to actually read some of that Medicare stuff and find out what exactly we are talking about $$ wise. Hey, who said money is no object? I know, it’s just the accountant in me!

We are continuing to do as many activities as we can. Getting out and moving is better than laying around all day, even if it’s just a little moving. I am making a point to get moving/walking on my own. David can’t go long enough or fast enough – I’ve always walked faster.

Last night another low blood sugar scare. Haven't had one of those for awhile. I heard David say “I need help” I came wide awake. Helped him get some juice and then had to get him more juice. He was having trouble staying awake. I usually worry if he is not able to stay awake, I guess I’m getting numb to all this as I let him sleep; I played cards and woke him in the suggested 15 minutes to check his blood sugar again. Gave him a snack and he immediately fell asleep. So even though his numbers were still low (but at “acceptable level”), I rolled over and went to sleep too.

Today David spent some time with a friend, making a promotional video for the upcoming purple stride walk – which is to raise awareness and funding for Pan CAN. He is enjoying this whole process and is a good walk down memory lane. Jim, his team captain, will be sending out variety of videos over time, they'll be fun to watch. I’m looking forward to seeing them myself! David’s legacy?

We are now home from chemo. Thought we’d be able to stop for dinner but David was not up for that. This whole round of chemo is not following the previous pattern.  Wanted to get home and lay down. He wasn’t feeling well. He immediately went to sleep. Not sure if I should leave him be or wake him in a bit for some dinner. He probably won’t feel like eating but hopefully I can think of something interesting. I need to go grocery shopping but don’t want to leave while he’s sleeping. Plus, I need some ideas from him, what might set well or appeal to his limited taste buds. I’m actually getting a bit into this whole cooking thing!

To end on a fun note: It was 39 years ago this month that David and I met. And they said it wouldn’t last…

doctor sez:

RE: CT scan July 9, 2019

Mr. Anderson,

CT looks quite stable, no big changes and no growth noted.

Stable is OK. Would recommend continuing with our current plan. 

That’s the latest report. And our understanding of the current plan is that David will go on chemo pill maintenance. This would be for his pancreas tumor and the small tumors that spread to his liver. Not exactly sure when or if more IV chemo will happen first. David is pretty much “done” with chemo. This round began in March 2019. That’s about 5 months plus the 11 months previous along with the 6 months of in and out of hospital, his body has really been put through the ringer. He’s already tolerated more than the average bear! And he’s done it all with a smile.

Folks have been asking, aren’t we going to Yuma anymore. People, its hot in Yuma right now. Never our plan to spend the summer in Yuma. Summer was to be the RV traveling months. This is our first summer in 30 years with no motorhome, it’s a little different. And just to prove we are still a little crazy, we are planning to go over to Yuma to our place for just a few days. No departure date yet.

Washington DC Advocacy Day. Here’s a picture of the Texas contingency at Senator Ted Cruz’s constituent’s coffee. I’m on the right and David, on the left, sitting proudly in his wheelchair loaner. He and Ted had a touching moment after this picture was taken. (Yes, we vote Texan, ever since we went full time RV – legally domiciled TX) [sorry don't know how to turn it]

And for a real chuckle, here’s my goofy guy at the World’s Fair in 1986! We met up with David’s folks in Vancouver Canada. They were in their class A motorhome and we in a tiny pop up tent trailer, dreaming of the day we’d have a motorhome and travel the county. And we did!

Little details of DC trip

Little details of our DC trip.

Monday at our training day; we were given that age old exercise of turning to someone you didn’t know before and do a brief hello. It was a little disheartening to turn to a fellow and his last statement to me was, “you’re in for a tuff time” referring to David.

Tuesday: We picked up the wheelchair arranged through Ted Cruz’s office; intern Adam was with us for the first short portion of in the Senate Russell building. While taking the elevator, it opened on a floor and there was Ivanka Trump! We were excited and against “rules” we rode back up; got off the elevator and circled around; as Ivanka was walking down the stairs. She looked beautiful.

Noon for the group picture; met Easton who was to be on one of afternoon meetings. He told me he had noticed David’s suspenders and new immediately what was going on. He’d been through it with his dad. For some reason that really touched me; his awareness and that the losing weight; needing suspenders was a “real” thing. Or maybe it was the heat and humidity that was getting to me!

Meeting in the Rayburn building with Representive’s aide; young gal (well, they’re all young) said David reminded her of her grandfather, funny and positive. Such an interesting comment with just a brief meeting, was nice to hear. I didn’t even notice, just David being David.

Below is fellow advocate Will and the three of us with Rep. Brian Babin.

Tuesday evening: after long naps we made it to the Navy Memorial Park; band and chorale preform during the summer. Wonderful music and voices and love the color guard (with 56 flags for our states and territories) and Close Order Drill (rifle deal). And who is sitting right in the front row, secretary Rick Perry.

Our hotel, JW Marriott, is right across the street from Freedom Park. A couple nights there was music and dancing and one night the big blow up outdoor screens for movie night. And the park was packed. It was great to see so many out and enjoying free entertainment. We were able to watch from the outdoor dining; no not the movie, just the activity going on. And it wasn’t official outdoor dining but they accommodated us. We got very good service from everyone. The one oddball, freaky, item; no buttons in side the elevator! You enter your room number on the keypad and it tells you which elevator to take. You enter elevator, no buttons, and ride to your floor. Nobody liked it.

Highlights that don’t begin to describe the trip and all the emotions, efforts, etc. Always thank you to all who support us in so many ways. Thanks for walking this journey with us.