Yuma Retreat

Even just the few days we are able to spend over at our park model in Cactus Gardens is revitalizing. The drive borders on being about 20 minutes too long, it helps when we make the rest area halfway pit stop. Now that I am doing all the driving, we often just drive on by, not switching drivers which enforced a stop. I must make the stop next time.

It’s getting harder folks – no, not in the way you are probably thinking, although it is getting harder, it’s the diet. And I’m feeling a little bad because I have just reread the pharmacy guide for patients and caregivers during chemotherapy with CAMPTOSAR. I swear this was not there the first time I read it. No chocolate, hmm, like chocolate bars? What about the chocolate non dairy drink supplement? Then I noticed – no dried fruits. I guess that includes raisons and we add that to cereal when we don’t have bananas on hand. Speaking of cereal, all these years we have so diligently shopped for high fiber whole wheat cereal and that is out. I mentioned in an earlier post (this might have been a post that went missing, it was sort of interesting, no cold food, no milk products, no coffee regular or decaf, etc) about how everything we learned in nutrition classes for diabetes is pretty much do the opposite now. Finally got down all the good things to do and then thrown this guideline. And while I’m complaining might as well mention that this xerox guideline has been over copied, reminds me of crappy school instructions, off centered and hard to read. (by the way “crappy” is a good description/pun for this).

Meanwhile, Yuma, last Saturday was an 80-year birthday and next Saturday is another 80-year birthday. Plus, Famous Dave’s BBQ was having a throw back 15 years and had some great prices. Unfortunately, David was only able to eat one of his 6 bone rib plate. Thank goodness I managed to eat his remaining ribs and the mashed potatoes the next day! I’ve mentioned before and if you’ve known any folks doing chemo you know their tastes buds are affected and what they can/want to eat today changes tomorrow. The Walmart is less that 2 miles easy drive from our place so I zip over and back on a regular basis. And when I go, I try to walk to whole store for a little exercise and a bit of a break from care taking.

Many of you know my favorite break is jigsaw puzzles. We have a nice little RV park library where folks share puzzles, as well as, books and CDs. I got a puzzle for this last visit and it is going to take several stays to get it completed. It’s jelly beans and a few hard candies. What was I thinking! This has been the hardest puzzle I’ve done to date. I’ve done some that I struggled with but I do believe this one wins hands down. But so what if it takes a long time? I’m not on any schedule and I just leave it at what ever partially finished point until the next time. I can sort of watch tv and puzzle at the same time. It is, for me, a great mindless occupation. The puzzle pieces don’t seem to mind when I curse at them.

I’ll leave it here for now. Monday, round 3 of this “new” chemo blend; after number 4, it’ll be CT time again and discover what changes may or may not have happened. Meanwhile, I can’t tell you how proud I am of David. He has endured more than the average person could take on I am certain. He has been a happier, uncomplaining, more positive patient than I expected. I know, David, that your days are filled with either pain or extreme discomfort and if at any time you’ve had enough chemo in your body, I’ll support you in taking a break but I’ll also continue to support you if you wish to carry on in your warrior fashion. Either way, you are my super hero and a terrific example and inspiration to myself and others.

Dreaded Monday - or is it

This Monday was the second “new” treatment for David. last week was pretty rough so I was not especially looking forward to this week. But (keeping fingers crossed) so far so good. I had written about the first week but apparently it wasn’t meant to be shared because it has disappeared from my computer. One of these days maybe I’ll figure out why, when I name the file, I can’t later retrieve it. Oh well, its just that it documented some incidences that may have been nice to reference later.

I’m also looking to start a black market of unused meds and food. I have an entire shelf of medicines, prescriptions and OTC that are no longer needed, many unopened. Diabetes – we reduced and then stopped glipizide. David had been having some low blood sugars and that is dangerous. And if you know anything about diabetes numbers, the doctor said as long as its below 300! Whoa. That’s pretty high. You may recall David was hitting lows around 40. Omitting glip is really a relief and removes the fear of going low and the difficulty getting his blood sugar back to normal/safe range. It’s nice to have one less issue on the table.

Blood pressure medication was reduced down from two pills to one script and now that’s been stopped too. Just as with his blood sugar we monitor his blood pressure so that it doesn’t get high again. But this is another reduced issue because possibility of dizzy and falling if BP is too low.

OTC – I got MiraLAX, ducalax, magnesium citrate (liquid and pill), along with too many others to bother listing that are still being used on occasion. It’s crazy. A lot of remedies for constipation but now that this one chemo med can cause deadly diarrhea, those are on the back shelf.

Food – now here’s another ongoing fluctuation of shopping and buying. What taste good today, doesn’t tomorrow. What he can eat today, he can’t tomorrow. Several days after chemo, very little eating, just a day or two before, yeah, eating. Anybody remember or like pimento cheese spread? David out of the blue thought he’d like some. So the hunt was on, it is not a popular or well stocked item. Finally found some and David was enjoying it on celery. I was able to find a second bottle and this food phase continued. Time for the 3^rd bottle (it’s a small glass container) and I searched high and low and could not find it anywhere. I finally found another brand, different container and this one stored in the refrigerator section, not on the shelf. Nope, not the same thing, “I don’t want it”. And I didn’t particularly care for it either. Just as well, because for now, David isn’t to eat celery. So I’ve got a tub of this stuff if anyone is interested.

Someone said to me to just think of it all as a cost of the disease. I can do that but it’s still an issue. Financial, medical, emotional, the cost is too high. Luckily, so far, I can handle the cost but I do feel for all the folks who are in similar situation and are totally overwhelmed by all the different aspects. I’m only slightly overwhelmed, LOL.

I’ll stop here as I need to make another run to the store for some obscure item and be ready to get David down to the hospital to disconnect the pump. Then, depending on how he feels we may head over to Yuma for a few days of down time. Snow birds are flying in and it’d be nice to say hello.

Carry on folks, don’t forget to hug your loved ones and make moments matter. Signing off.