Month: November 2023

19 November 2023

Three hours and 36 minutes of sleep. It must be the prednisone. I started reading around 1:30 am and tried to sleep again at 4 am but gave up and got out of bed around 4:30 and made coffee and ate some cereal with fruit. I was really dragging.

Yesterday, I managed to clean the glass on the outside kitchen door and the sliding glass door and panels. I could barely stand up after that effort. I also cleaned at the house and washed clothes, folded them and put them away. Yes, I know that sounds silly listing all that but each chore is an effort. Later, I cleaned the refrigerator to get it ready for all the food that will be in it on Thursday. It seems I paid the price this morning.

I still had things I needed to do. I cleaned the outsides of the stainless steel refrigerator, the microwave and the oven. Then I cleaned the outside panel of the dishwasher. I even managed to clean the inside of the kitchen door glass as well as the sliding glass door. I said to hell with the panels of the sliding glass door.

I usually go grocery shopping on Sunday but didn’t have the energy. Instead, I ordered from Whole Foods online and they just delivered (albeit a little late) the goods. I finally got all of it put away and ready

Dr. Jellinger texted me on Saturday to tell me to continue of the 10 mg dose of prednisone and perhaps go to 5 mg on Monday. He also said if my blood pressure was consistently greater than 140/90 to restart the Losartan but cut the 100 mg dosage to 50 mg (which means I need to dig out the pill splitter). He’ll have Farah, his aide, arrange a Tele-Med sometime on Monday.

What it boils down to is I still have no energy, I’m lethargic and easily fatigued. However, I’m surviving. I’d like to do more than survive, however. Hopefully, he’ll have a plan to get me over this low spot.

On a high note, Ole Miss actually started to play ball in the 3rd quarter and eventually beat University of Louisiana-Monroe by 35-3. It was 7-3 at half time. I suspect Kiffin lit a fire under them in the locker room at half time. Ole Miss used to constantly overlook schools they were supposed to beat and lose to them. Now, if they can only beat Mississippi State!

Stay tuned!

17 November 2023

Around 1:30 this morning I waked by some sound in the house. I got up to investigate and as I passed my “computer room” I noticed the printer screen lit up. I then realized it was either updating software or there had been a power surge. I started back to bed and decided to get a drink of water from the glass at my bedside. It was getting close to empty so I headed to the refrigerator to top it off.

As I passed the air filter/dehumidifier in the living room, I noticed only one of the four lights were lit and the machine was not running. I stooped down and powered on the other three lights, got my water topped off and stopped by the utility room to reset the air filter/dehumidifier in there. I also noticed the oven clock flashing, so that solved the mystery – power surge.

Returning to the bedroom, I set the water glass down by my bedside. I have a pair of Ratan dressers that I also use as a nightstand on either side of the bed. That’s were the glass went – on the right side of the bed, on the dresser.

I have an air filter/dehumidifier in the bedroom and knew I would not be able to see the buttons to reset it without a light so I used my trusty iPhone flashlight feature to reset it. Then I turned off the flashlight and as I reached to put the iPhone back on the charger, I knocked a full 16 oz glass of water all over the top of the dresser. I also managed to wet my iPad, all my medicines on top of the dresser and anything within range. Fortunately, my iPad survived the deluge as did my medicines. I spent the next little while soaking up the water. The weave is so tight on the Ratan, plus it is well sealed, plus I wax it once a month that no water penetrated to the drawers in the dresser.

Of course, it took a while to get back to sleep after that. You kinda have to laugh at that. My dressers are taller than my bed. If they were lower, I would have spilled water more frequently, I think.

Dr. Jellinger made contact with Dr. Velez who was flying into Houston. They conferred on my condition. Dr. Jellinger upped me to 15 mg of prednisone yesterday and had me take 10 mg today. He wants me to keep checking my blood pressure. When I go in for the hydration infusion today, he wants the nurse clinician to monitor my CBC results and pay particular attention to my high white blood cell count. I’ve been cleared by both Jellinger and Velez to receive cortisone IV if the clinician deems it necessary from the blood work.

I still feel lethargic, weak, and fatigued. Dr. Jellinger is surprised at that and wants me to take my blood pressure a couple of more times after resting 5 minutes. He also wants me to check my urine with ketostix to make sure I’m not going into ketoacidosis.

Joel will take me to the cancer center this morning (Jellinger doesn’t want me driving) and Keith will bring me home around 5. He’ll also take me to Walgreens to pick up a new prescription of 5 mg prednisone since those 2.5 mg tablets are going fast when I have to take 4 to equal 10 mg.

This crap is getting old. I’m glad the two doctors are talking and are on the same page for treatment. Maybe between the two they can come up with some “cure” for what ails me.

I do feel some of the effects of the Taxol treatments are wearing off. I no longer have to blow my nose for a couple of hours to release blood clots. I’ve noticed that my hairless less are beginning to get coarse hairs reappearing. I’ve also noticed I need to shave more frequently (and the hairs are coarser) and I have to shave my head more often. Now if only that damned neuropathy would mitigate!

In trying to drift off after the water fiasco, my mind started to wander and I was taken back to my days in the Boy Scouts and Camp Kickapoo and some of the antics that occurred. I’ll try to write more about that later. I’m tired of writing about medical mumbo jumbo.

Kudos to Jim and Holley who provided me with dinner from Tom Jenkins BBQ. When I first moved down here in 1985, Tom Jenkins only had a smoker at a service station on Federal Highway. He since has moved into a building. You had better get there around 11 am or you’ll be swamped and be hard pressed to find a seat at family seating. Holley ordered a half BBQ chicken and she always gets two sides of collards. She texted me to see if I wanted the quarter chicken she didn’t eat and one of the collards. I said yes and they dropped it off. Later, I get a phone call that they had accidentally dropped off Jim’s take home. I would have been satisfied with that but she insisted Jim drop off the chicken and collards.

Tom Jenkins BBQ is pretty damned good but the collards are the best. He adds a little sugar to them and they are delicious. I ate them first.

With all the flooding, Broward College is closed today. Holley was also scheduled to have a departmental party and she bought a whole tray of Cuban sandwiches for the faculty and staff in her department. Since that went out the window, she wants to share them with me. I’ll get a platter of Cuban sandwiches sometime today. If you don’t know, there’s a huge argument in the Cuban community as to the origin of the Cuban sandwich. Miami makes a claim but so does Tampa and Ybor City. It’s an ongoing feud.

Judith and Chis will also deliver some Jewish penicillin today. Chris made a huge batch of chicken soup once before for me and he and Judith will deliver another batch today. Dr. Jellinger suggested soup so it’s like they read his mind.

I may update this update later today after my infusion.

Stay tuned!

16 November 2023

Sorry about the inability to load the site yesterday. Hopefully iPage has fixed all the problems.

Wow! Yesterday, either I was feeling better before the massage or Tom worked miracles. I felt better than I have in a long time. I still get dizzy if I stand up too quickly and I’m still unsteady on my feet but I felt pretty good. Turns out I was the second cancer patient Tom had worked on that day and that person was having troubles with his chemotherapy, also. Small world. I’ve already scheduled my next month’s massage. It really does help me.

It’s official, Fort Lauderdale is the wettest city in the U.S. After today, we may be the wettest city in the world. It has rained pretty constantly all day yesterday and it looks like today will be the same. I keep looking out my front door to see if I’m going to be flooded again. Fort Lauderdale reported 8 inches of rain in some areas with 4 more expected today. The city also reported some “ponding” on Riverland Road next to my house – a tactful way to say it is flooded.

A couple of times we had wind gusts of 50 mph (tropical storm winds). When you look at my pool, you can see the results.

Farah, Dr. Jellinger’s assistant called yesterday and clarified that I’m to take prednisone every other day and after 4 days of pills, schedule a blood draw. I remembered to ask her what my cortisol level was and it was 1.2 µg/dL. The normal range is 6.7-22.6µg/dL. I’m severely low. Hopefully the prednisone will do its job and get me back in the normal range. It’s either that or I have a real problem with my adrenal glands or pituitary gland.

This morning my blood pressure was very low. I’ve taken it four times this morning and it’s 99/72, 83/58, 97/62 and 78/64. I texted Dr. Velez and told him I was dizzy and had low blood pressure and gave him my cortisol reading. I then left a message for Dr. Jellinger about whether or not to stop taking blood pressure medicine. While I wait for an answer from Dr. Jellinger, Dr. Velez texted me to stay hydrated and stop the blood pressure medicine for a few days. I gave each the other’s phone number in hopes they will consult each other. My symptoms for adrenal insufficiency are pretty much the same for chemotherapy.

I can’t believe how well I felt yesterday and how badly I feel now. Just as I think I’ve turned the corner, a step into the path of a Mack truck. Tomorrow is hydration infusion and I suspect I need it.

What I don’t understand about hydration is, here at home, I drink plenty of water, Gatorade, coconut water – all of which supposedly keep you hydrated and I even take Pediolyte. How can I be dehydrated? Yes, Jardiance makes me pee more but I more than compensate for that with fluids. I still have night sweats but I can’t be sweating out that much fluid.

I know I said I would quit whining on this post but some days are harder than others.

Stay tuned!

15 November 2023

At least I feel I have some idea as to why I haven’t been feeling well this past few weeks. Yesterday, Farah, Dr. Jellinger’s aide (Dr. Jellinger is my endocrinologist) called to tell me my cortisol levels were low.

Cortisol is a hormone produced by the adrenal glands (which sit atop the kidneys) and has several effects on the body. I used to define a hormone to my students as a chemical substance produced in one part of the body but has its effect on another part of the body. Cortisol releases stress, helps regulate blood pressure, helps regulate glucose levels, suppresses inflammation and affects sleep patterns.

Farah says Dr. Jellinger wants me to continue with prednisone. The new prescription is 2.5 mg (versus 5 mg) and I’ll take it every other day. After 4 days, Dr. Jellinger wants another blood draw – which means fasting, which means breaking my routine.

All this seems to be brought about by my taking Dexamethasone for nausea during chemotherapy. The day before chemo, I was to take a 4 mg tablet of Dexamethasone and then the day after chemo. During chemo, I was given a cocktail of Benadryl, Dexamethasone, Pepsid, and Zofran. I can only assume the Dexamethasone was at least 4 mg, so that was a total of 12 mg of Dexamethasone a week.

Dexamethasone is human made corticosteroid that mimics cortisol in that it attaches to the same receptors as cortisol. The effect is that instead of cortisol attaching to specific receptors that affect Adrenocorticotrophic Hormone (ACTH), Dexamethasone attaches instead.

ACTH is produced in the pituitary gland in the brain but exerts its influence on the adrenal glands. Reducing ACTH (which Dexamethasone does) causes a reduction in cortisol in the blood.

Low levels of cortisol result in adrenal insufficiency (also called Addison’s Disease). Symptoms of adrenal insufficiency include: extreme fatigue, weight loss and appetite loss, areas of darkened skin, low blood pressure and even fainting, salt craving, low blood sugar, nausea, diarrhea, vomiting, abdominal pain, muscle and joint pain, irritability, depression, body hair loss, and loss of libido.

Out of all those, I can say I don’t really have a salt craving and haven’t had nausea or vomiting. Otherwise, everything else on the list is spot on. I wonder if I’ve had this condition since beginning the chemo? The problem is that a lot of the effects are also the same effects of chemo. Dr. Velez at the cancer center probably assumed my complaints were chemo related. Dr. Jellinger saw my last blood work and when I told him I was on Dexamethasone, immediately suspected adrenal insufficiency. I think both are a little bit correct.

Hopefully, the tapering off of the prednisone will get me back on the road to recovery. Since Dexamethasone was mimicing cortisol, and I suddenly stopped taking it when the 9 weeks of Taxol treatment ended, I ended up with withdrawal symptoms of cortisol. By prescribing prednisone (which mimics cortisol) over a period of time, Dr. Jellinger is trying to lessen the withdrawal symptoms.

The result of all this is I need to drive to Walgreens to pick up the prescription. Then if I feel up to it, I’ll drive to Wilton Manors for my massage at 1 pm. Life seems to be getting more complicated, particularly medically. The cancer center may save me from cancer but kill me with the cure.

Stay tuned!

14 November 2o23

Today is a sucky day. I have absolutely no energy. I barely got coffee and breakfast made. I checked my vitals and everything was OK. My blood pressure was a little low at 97/73. My temperature was normal at 98.1°F and my sugar level was OK at 125 mg/dL. Otherwise, I was doing good to move around the house much less do anything in the house.

I have a recall for my Jeep that I need to schedule and I need to call the pool company about my pool heater and I need to shop for a new internet service since mine jumped about $80 this month. I just don’t have the energy to do it. I can do the Jeep anytime (even though they predict death and destruction if I don’t do it) but it’s been under recall for over a year – they just din’t have a fix for the recall until recently.

As far as the pool heater is concerned, I’m not planning on getting into it any time soon and everything works with the pool heater shut down, so maintaining the pool is not a problem. My pool company will send someone out to check on it when I call but I’m not in a hurry.

The internet cost is high but I figure I can handle that for a while until I get the energy to deal with it. I hate spending time on the phone and computer shopping providers. I know that’s the thing to do but usually inertia takes over and I just let the issue alone.

To add to the mood, today is overcast with a prediction of rain for the next three days. Actually, we need the rain, I need it specifically so I don’t have to add water to the pool and the grass could certainly use a good watering. The only problem is it could be coming from a tropical low which has potential to develop.

Even though Florida has been hit once this year by a hurricane, our area has been spared and I think we have gotten a little lackadaisical about our chances. Hurricane season is not over until November 30th and the National Oceanographic and Atmospheric Administration (NOAA) has for the last few years considered expanding the season beginning in May and ending in December. There’s at least some chance of a hurricane before the season is over.

My brother Archie has taken to sending me books. The latest is a book by Lewis Gizzard, I Took A Lickin’ and Kept on Tickin’ and Now I Believe in Miracles. I used to read his column in the Atlanta Constitution for many years and have read some of his other books. This was apparently his last book. His sense of humor is missed.

I also enjoyed the comedian Jerry Clower back in the day. He put out several comedy albums in the 70’s. I remember one night as a graduate student going to eat with some friends at The Gin, a great restaurant in Oxford that was converted from an actual cotton gin sadly, it later burned). Sitting next to us was Jerry Clower. We, of course, ease-dropped on his conversation with his table. He was very down to earth and took it with grace when people interrupted his meal to fawn over him. He noticed us and nodded and spoke to us while we waiting on our meal.

One of my favorite Clower stories is “Marcell and the Beer Joint.” For some reason, it tickled my funny bone. It was probably funnier when I first heard it but it still is cute.

Stay tuned! Hopefully tomorrow is better.

13 November 2023

Prunes! I’ve resorted to eating prunes to facilitate bowel movements. I’ve gone from severe diarrhea to constipation in this cancer journey. Everything other than bowel movements seem to stay the same. Numbness, shooting pains where the numbness occurs, poor balance, lethargy, fatigue, etc. Even typing this blog is difficult because I can’t really feel my finger tips to determine if I’m on the home keys.

In one of the few good days I’ve had I madly ordered a new set of boots. They should arrive sometime today but I lately despair of ever needing to wear them again.

I may have company tonight who is brining home made chili and brownies. Tomorrow, Nancy and Michel suggested brining me Greek food. I was actually supposed to go out to restaurants tonight and tomorrow but I can tell that isn’t going to happen. Hopefully I’ll be able to keep my massage appointment on Wednesday.

As you know, I’ve less than successful attempts at Washington Post recipes. Last night I tried a New York Times recipe for beef stew. It was edible but that’s about it. I guess I’ll go back to the old basic cookbooks.

It seems I have a raccoon in the back yard. The only reason I can tell is there are rather large pieces of pool on the pool edge and in the pool. Sometimes, when they are around, you can see their little footprints around the pool decking but today was the poop. Good thing the chlorine level is consistent!

Not only raccoons, but something’s wrong with the pool heater. I suspect it is an electronic pilot but if it is a regular pilot light, I can start that again. I don’t have the energy to check it out right now. I stay cold all day and getting into 84°F water is not attractive at the moment. If I ever get enough energy, I’ll look into it or simply have someone come out and check it out.

Lately, things other than me seem to be failing. The generator for the house had a battery blow up and now the pool heater.

Sorry for the whiny blog. All these side effects wear you down. I promise to be more upbeat on another day.

Stay tuned!

12 November 2023

Thank goodness for home grocery delivery! I could probably make it to the grocery store today and even shop but I really don’t feel like it. I still have zero energy and I’m in the negative range for motivation. Neither Catherine nor I feel like going to breakfast today.

My hope that night sweats would end didn’t occur. I still put down a towel on top of the fitted sheet at night and I’m never disappointed that I did. It wasn’t too bad last night but I’ll soon need to wash the outside of the pillows. To show you where my brain isn’t, I noticed one of the pillow cases was inside-out. I corrected it this morning.

One of my favorite web sites that I check daily is electoralvote.com. Yesterday, on Veterans Day, they had a letter from a reader about the appropriate response to “Thank you for your service.” The reader was at a loss of what to say because, as you probably know, not all military service is the same. My personal opinion is that I don’t care for the phrase. Monday’s site intends to run other readers’ comments as to the appropriate response, and I assume, their feelings on the issue.

For example, I went into the Coast Guard because it was the least likely to be sent to Viet Nam (Coasties did go and did die in that conflict). My brother Archie was on a submarine during the Cuban missile crisis and was probably far more exposed to danger than I. Dad fought in both WWII and Korea and was in far more greater danger than either Archie or I. Not all military service is the same. If I had not been under the threat of drafting into the army, I probably would have not enlisted.

There are some that would bring back drafting personnel into the military. You are still required to register for the selective service even today. Most military professionals will tell you they prefer an all volunteer army as opposed to a forced draftee. Even more amazing to me are the number of people that have never been in the military that are the most vociferous about universal military service.

My four years of experience in the Coast Guard provided me some insight. There are good and bad things about the experience. For example, I learned to type and copy International Morse Code. I learned how to operate complex equipment and even learned how to steer the ship. I made some life long friends while in the Coast Guard.

Unlike the recruiting commercials on TV, military life has its ugly side. We had some officers and enlisted men with egos that didn’t match their abilities. Military academy graduates were referred to as “ring knockers” because they would often tap their ring finger on surfaces to make sure you know they were an Academy graduate. There was a great deal of pettiness in both enlisted men and officers. In some cases, there was a meanness. In one case, we housed in our ship’s brig an enlisted man up on charges of murder. I remember one of the engineering crew slashing the tires of an officer he didn’t like. Favoritism was rampant.

Alcoholism was prevalent and probably accidentally promoted by service clubs with cheap booze and beer. We often had incompetent crew that put your life needlessly in danger because of their incompetence. We had one particularly challenged ensign who was standing nights watch while we cruised at 18 knots in and among oil rigs in the Gulf of Mexico. He was probably a threat to the entire crew while on duty. The Band of Brothers concept was tenuous at best.

Of course, I realize this was during the Viet Nam war and everyone was trying to stay out of the conflict. You had to volunteer to enlist in the Coast Guard for four years as opposed to two years service as a draftee into the Army. The result was you got a real mixture of people. I learned to interact and get along with all types. I also learned when to keep my mouth shut.

So, back to my original point. I don’t really like “Thank you for your service” since there are so many variations of service in the military. It was a job, like anything else for me. For others, it was the ultimate sacrifice, willingly or not. Would any of the dead of any of the wars or conflicts say they willingly gave their lives?

Just realize that those military recruiting advertisements are exactly that. There are both good and bad things about the military. The majority of military personnel are support personnel for those who are active in the field, dodging bullets, bombs, and bullshit. They are the ones to thank for their military service.

I’ll get off the soapbox now.

Stay tuned!