Day: June 16, 2023

16 June 2023

I got some good news yesterday. The final part of the genetics testing came back (even though their web site and phone system crashed). I was negative for 82 additional gene markers for cancer. Of course, they place caveats everywhere saying it didn’t mean I still couldn’t get those type of cancers but at least, by their determination, I was not predisposed for them.

That was about the only good news. Diarrhea returned with a vengeance. It finally calmed down early this morning around 3 am. I finally got to sleep and have gone 4 hours without any bouts until almost 9 am.

I did manage to get a 5 Guys hamburger for the price of $30 (included a tip for the UberEats driver. He didn’t speak English and kept asking me for the last four digits to complete the order. I assumed he meant SSN and that threw me. Why would a burger place or Uber need to know that. Finally, I understood he meant phone number. I said 8903. Mental fog. Then he thought to try a pin. Didn’t have one. Finally, his wife who spoke English, who was riding with him, came out and we finally sussed out the correct phone number for me. By then the fries were cold and the order wasn’t quite correct but I managed to eat 3/4 of the burger which I count as my first real solid food in a few days.

Kathy at Biennes Oncology called and explained Dr. Burgers (the surgeon) has some time available at 3 pm today. I’m too weak to drive but I plan to get someone to take me and go in with me and provide an extra set of ears. I asked Kathy to discuss with Dr. Burgers whether to readdress the surgery. I just don’t know how my body can possibly take another round of chemo right now (June 26th).

Chad, the contractor texted and said he planned to have someone over today to start the stucco. He’s lining up painters to finish the exterior and interior paint jobs and he seems eager to get my little piddly job finished. I would love to have my house back to normal. It’s probably only for a short time. Pensacola reported 10 inches of rain in a little over an hour. It looks as though these flash flood events are to be a permanent factor in Florida.

It’s mango season in south Florida and I can’t eat any because of the diarrhea. It’s killing me. My neighbor’s tree which hangs over my yard produces the best mangoes I’ve ever eaten. The fruit is quite beautiful and rather large for a mango. I usually save as many as I can and freeze them later for mango sorbet.

However, I just haven’t had the energy and have to watch the iguanas feast on them.

Some people can’t eat them. Mangoes belong to the same family of plants(Anacardiaceae) as poison ivy, poison oak and poison sumac. If you are susceptible to those, the leaves, flowers, sap and peel of the fruit can cause anaphylaxis. Fortunately, I can handle them and eat them. Ironically, my neighbor next door, whose tree it is, cannot touch them.

As soon as I know something from my conversation with Dr. Burgers, I’ll be back with an update.

Stay tuned!

15 June 2023

Yesterday, I was leery of driving anywhere so I asked Barb if she would mind running to CVS and picking up a couple of prescriptions for me. She said she would be delighted. Previously, I called CVS and asked about prescriptions from Holy Cross. The pharmacist who answered said two were ready and one was due in later that day. I asked if it would be possible for a friend to pick up and she said “Of course!”

Barb showed up at the house (in the rain) and I gave her my drivers license and credit card and very shortly she returned. (She had tried to text me but I didn’t see or hear the text arrive.) The drive through said that no prescriptions for me were available.

After a second phone call to CVS, the pharmacist said the reason was the person on the window didn’t know I had two entries in their system (neither did I). Barb dutifully returned to CVS and eventually returned with three prescriptions. Apparently the third made it in from wherever.

People are still checking on me by calling, texting, emailing or coming over. It’s really humbling to know I have such good friends.

Last night was also humbling. Diarrhea returned but at least a little more moderately. Since yesterday and including this morning, I’ve had seven episodes and none of those were as bad as the Sunday night before I was taken to the emergency room.

I did manage some Raisin Bran cereal this morning and since my coffee tasted so horrible yesterday, I managed a cup of breakfast tea. Then I went back to bed and actually slept a little more. I just downed a bottle of GatorAde and I’ve found I can drink iced tea fairly easily. My appetite is still very iffy. What’s strange is I’ll think of a food and think “God no!” and then think of another and think, “Yea, I think I can do that.” For some strange reason, I think I could eat a hamburger from 5 Guys. I do the basic: single patty, light mustard, pickle and onion. Why I think that is a possibility, I don’t know.

My sleep patterns are all over the place since I have to wake up and run to the toilet with diarrhea. Hopefully, the dire rear will calm down and I can get more uninterrupted sleep.

I got news today that my second set of genetics tests are complete from Invitae. However, when I log in, the system stalls and I cannot access the tests. I have to admit I’m curious to see if there are any other genetic markers for cancer in my genes. I sent them an email asking for help and am awaiting some reply from the company.

I’m playing a waiting game with Holy Cross Oncology. Kathy is trying to see if she can find me another hematology oncologist who is willing to work with me and also discuss with Dr. Burgers if surgery first is still an option and if so, what are the benefits over chemo first.

South Florida is in the middle of its rainy season and so we can pretty much expect to see afternoon showers every day. We have heat warnings out and I can image anyone with an outside job are not enjoying their summer at the moment.

My new toothpaste is very expensive and very exclusive. My regular toothpaste burned my mouth. The new one is baking soda and enough coconut oil to make a paste. Every time I go to the dentist these days, the final step is to blow a solution of baking soda into and around my gums and teeth.

Ruby, my grandmother, never had a cavity until she was in her late 50’s. She always brushed her teeth with a mixture of baking soda and salt. After a while, I started using it until I realized actual toothpaste was a little nicer to brush with. I’m of the age that fluoride had not been added and as a result I had a ton of cavities as a kid. Dental practices back then were little more evolved that the days of the Wild West and Doc Holliday.

One practice mother took me to did a major block of the nerves by a direct injection of novocaine directly into the hard palate. That was utter misery. Only much later did dentists start blocking specific nerves with their injections.

Speaking of fluoride, when I was in library science school at Florida State University, one of my teachers was the one to research fluoride in toothpaste for the federal government. As you know, there was great controversy over the inclusion of fluoride. It was a communist plot, etc. My professor was the one that researched all the clinical trials and allowed toothpaste companies to refute the nut-case claims on fluoride. Of course, when fluoridation became common place, the incidence of dental caries dropped precipitously .

My dental health improved significantly after my freshman year at Ole Miss. I attribute this to stopping my childhood diet of cokes and potato chips and eating a more balanced diet at the university cafeteria.

When I went into the military, the Coast Guard removed and replaced every filing in my head (and trust me, there were a lot of them). Strangely, they did not remove any wisdom teeth although that was a common practice back then. They didn’t want sailors to be at sea and have impacted wisdom teeth. After leaving the CG, I went to graduate school at Ole Miss and the local dentist informed me I did, indeed, have wisdom teeth and they had become impacted.

I’d heard horror stories (and seen a few in the CG) about wisdom teeth removal but this guy simply used a probe to roll them out. There was little to no bleeding and I never had to take any pain medication. At least that went right and was payback for all the pain I suffered at the hands of dentists as a kid.

I eagerly await the outcomes of this afternoon and night’s diarrhea bouts.

Stay tuned!