Month: January 2024

12 January 2024

It seems like another good day! Instead of sleeping until 8:30 am I was up at 5 but feeling good. Perhaps, just perhaps, I’m getting over the effects of Taxol and adjusting to Herceptin.

I opted out of my first dose of insulin this morning. I have to remove the continuous glucose monitor (cgm) for the MRI this afternoon and I wanted to make sure I had a monitor available all day to check my glucose. Last night as I was about to go to bed, the phone alerted me to a low glucose level and I quickly popped a few Tootsie Roll miniatures into my mouth. I’m nervous about injecting insulin when my glucose was low last night. I’ll inject my first dose on Saturday morning when I have a new cgm in place.

I managed to remember my wrist splints last night. So far, I remember to put them on one night and not the next. I’m not sure they are working but I do seem to have a little more feeling in my hands and feet but that could be due to the Gabapentin. In either case, splints or medication, I appreciate the ability to feel a little more with my fingers. I still have a lot less strength in my right hand than my left.

True to their word, Hollywood Chrysler Jeep called me back yesterday – at 5:58 pm. They did not leave a message so I don’t know if my jeep is ready or not. Perhaps the colds got worse.

According to MyChart, my MRI procedure should take 45 minutes. They want me there 30 minutes early and that’s with pre-registering on MyChart. I should be done about the time 5 pm traffic snarls start.

It’s so strange to feel well. It gives me hope even if the neuropathy never goes away. I may try a short walk this morning. It rained most of yesterday so maybe it’s worth a try. I’m sure people will wonder who the new person in the neighborhood is.

My thoughts are with my cousin Charles. He’s due for a PET scan next Thursday and I hope everything comes back clean and clear. Charles is a few years older than I and therefore I was naturally closer with his younger sister Jean while growing up. I remember as a kid he was a member of the Mississippi National Guard which was a big deal back then – at least to me. To me he was always the quiet and kind relative. I don’t remember him talking too much back then but when he did talk, you listened to his opinion. Over the years we’ve had too infrequent contact – sadly, mostly funerals of our parents. What I do know is he’s always willing to help someone out. He’s done so several times for me – both with my parents and me. Thanks to his wife Minnie Jean for keeping me informed. He’s in good hands with her support and care. Here’s hoping for a good medical report from the scan on Thursday!

Stay tuned!

5 January 2024

Wow! Not a good night. I went to bed early but waked around 11 pm. I knew I wouldn’t get back to sleep immediately so I took a Tamazepan and read until I was able to doze back off a little before 1 am. I had a Tamazepan hangover when I got up around 7:30 am.

I finally got enough energy to shower and head out to my Walgreens to pick up my new prescription of Gabapentin. I wouldn’t object so much to all this medication if I was getting high off it or something but it really doesn’t seem to be doing much good. Dr. Chamley kept saying he was more than willing to “poison” me with drugs.

I talked with the pharmacist about the insulin which Medicare does not cover. If I were to pay out of pocket, it would cost thousands, according to her. I researched two other insulin pen products. The one Dr. Jellinger put me on was Tresiba (Insulin Degludec). I found Humalog (Insulin Lispro) available at CVS for $13.37/30 days and Lantus (Insulin Glargine) at Publix for $35/30 days. I have no idea the difference in these forms of insulin and, of course, my doctor’s office is closed today so it’ll be Monday before I know anything.

I did pick up a cane. Dr. Chamley seemed to indicate this was very necessary for me. Again, the selection is overwhelming.

I also picked up a pair of wrist splints. You need a right-handed pair as well as a left-handed pair because I have bilateral carpal tunnel according to Dr. Chamley. I hear black is stylish so I can be in fashion when I sleep.

I also found out that when I go in for my MRI on the 12th, I ‘ll have to remove the continuous glucose monitor. That means I’ll waste a few days of its allotted time. It’s a 14 day monitor.

No word from the jeep place. Hope spring eternal for some but also dies on the altar of despair more often. I’m not counting on getting it back until Monday at the earliest. I’ve gotten use to driving Joel’s 1997 Toyota Camry. It’s like driving a tank down the road.

Today is hydration. They still have me scheduled for another hydration on the 12th that I canceled. I also need to schedule more Herceptin infusions and hydration infusions before I leave their facility today. One day, I’ll be shocked when things go according to plan.

Hopefully today’s hydration will perk me up.

Stay tuned!

4 December 2024

The good news just keeps on coming.

The chiropractor explained a nerve was being pinched to cause muscle fatigue in my left leg. He finished by wanting me to visit every 2 weeks and before I walked out the door, decided on a weekly schedule.

I called the jeep place and got hung up on once and then, miracle of miracles, got my service representative. She explained they were waiting on a sensor (this I knew – which was supposed to come in yesterday) and that it would be Saturday or next Monday before the work was completed. I asked if it was possible to do all the work except for the sensor and she was going to check. I said I would bring it back in when the sensor was in-house. If I had to wait until Monday, that would be 13 days they’ve had the jeep.

Brandon, from the jeep place finally returned my disconnected call. Now they are trying to figure out why the check engine light is on. They have an error code (P22FA) but they are not sure why that is showing up.

The best news I hold for last. My afternoon appointment with Dr. Abraham Chamley, neurologist at the Phil Smith Neuroscience Institute at Holy Cross led to a very thorough examination of my neuropathy issues. The long and short of it is some of it is neuropathy. Remember, my endocrinologist doesn’t think it is due to diabetes. Chamley thinks the foot area is diabetic neuropathy. The neuropathy in the hands is different. He thinks it is bilateral carpal tunnel syndrome. My right hand is considerably weaker than my left had (even though I am right handed. He thinks that is due to median and ulnar neuropathy. It can be brought on by leaning too much on one elbow. He suggests wrist splints for sleeping.

As far as the feet go, he wants to do an electromyogram (EMG) in which electrical activity within the muscle is measured. I also have foot drop in both feet. He wants me to use a cane when walking and depending upon what the EMG shows, may require Ankle Foot Orthosis (AFO) brace for my legs and foot. He also wants me to use a seat in the shower since I am so unstable.

Whereas Dr. Velez is not a great believer in Gabapentin, Dr. Chamley is. He’s allowed me up to 600 mg/day. He’s written the script for 100 mg capsules that I can add to the amounts easily with plenty of refills.

So, let’s see: wrist splints, a cane, and shower seat. There’s the possibility of AFO braces for foot drop. I may never get my jeep back. Oh yeah, the Continuous Glucose Monitor is covered by Medicare. The Triseba insulin injection pen is not. It costs $508.43 per pen. I have a coupon from GoodRx which brings the cost down to $84.92. I need to research other options and other price reductions.

And I wonder why I’m depressed.

Stay tuned! It’s about to get bumpy.

3 December 2024

The morning started early (3:30 am) but finished late (7:00 am). Somewhere in there I managed to get back to sleep. No breakfast and no coffee this morning so I was dragging a little on 5 hours of sleep.

I left a little after 8 am to have blood drawn on Stirling in Hollywood. I was not used to Joel’s car. First, I couldn’t unlock the door. I was afraid I would break the key off in the lock but with a little jiggling, I got the door open. Then I had trouble getting the key in the ignition to work. More jiggling. It finally started.

I didn’t park it in the garage (the body was too long) and I had to run the windows up and down and the windshield washers to clear the dew and fogged glass. The windows are power windows and the car is old and the buttons were a little sensitive. For a while there, I thought I was going to have to drive all the way with the front windows down.

They finally reacted to the power buttons and I was able to raise them. Then the windshield wipers started up on their own. Joel had warned me about this. I pulled into the blood draw place with windshield wipers beating time with me and Bobby McGee.

There was a line of 4 people waiting to get their blood drawn but the line moved quickly with two phlebotomists. The one drawing my blood asked if I drank plenty of water before coming. I said no. He said I needed to do that. That was interesting because I remember one time when the nurse told me to only drink enough water to take my meds in the morning. Next blood draw I’ll drink water, water and more water if it makes it easier on them to find a vein. I was back home by 9 am and had breakfast and coffee.

My next appointment is 2:30 with Dr. Jellinger. I plan on napping until 1 pm and then getting ready to head out. More windshield wipers.

4:57 pm
OK, I’m officially depressed. He did put me on insulin (14 units). I also now have a CGM (continuous glucose monitor) – FreeStyle Libre 3. I’m sure I’ll knock it off my arm at least 3 times a day.

I’ve tried to stay off insulin. I never wanted to go on it. I remember how difficult it was to regulate for people when I was a kid. The CGM will monitor my glucose 24/14. It has to be replaced every 14 days. I’ll use a pen device with insulin preloaded. I’ll dial the needed amount on the pen and inject in the region around the lower abdomen (2 fingers away from the belly button) every night at bedtime. I no longer have to do daily finger sticks. I do have to stay on the Metformin.

I’ve been promised I will love this system. Supposedly you never feel the needle go in. However, Farah has been on insulin for 40 years and she told me she gets an itchy rash around the injection sites.

I’m to self regulate the insulin in 3 unit increments. My target goal is 90-115 for glucose. I’ll adjust the insulin dose based on the readings of the CGM. I’ll check the readings on my iPhone. If my glucose level drops too low, the phone will notify me with an alarm and wake me if asleep.

Dr. Jellinger said this was not necessarily a lifelong association with insulin. I might become a candidate for Ozempic or I might go back on Jardiance. He continues to be concerned about heart failure/heart disease because of the Herceptin infusions. That’s the number 1 and 2 side effects of the monoclonal antibody. However, he was pleased with the echocardiogram. He was concerned that the left ventricular ejection fraction was 56% which puts me in the category for heart failure. That and I have a high calcium score showing calcification in the heart.

We discussed whether diabetes has any effect on my neuropathy and it may have some. He’s not so sure my neuropathy will be permanent and wants to hear what the neurologist says tomorrow. He does say Gabapentin is often used to treat neuropathy in diabetics. I’ll possibly know more tomorrow.

He pretty much believes my fatigue and weakness and edema of the calves and feet are due to the Herceptin. I need to ask Dr. Velez if that gets better. Otherwise, I’m looking at an entire year in compression socks and blue funks.

I’m to notify Farah at the end of one week on how things are going with the insulin. I have an appointment with Dr. Jellinger on February 28th for a review.

Stay tuned!

2 January 2024

The morning started out lousy. Like a broken record, I had no energy. So little energy, I called Joel to see if he could take me to my echocardiogram. So much for his extra vehicle sitting in my driveway. He was free and showed up at the house on time and delivered me a few minutes early. Holy Cross is in the process of shifting locations of departments so there were temporary signs indicating different specialities all over the place. It took a while before reception could contact the Non-invasive Cardiology Department but the same person who did my first one showed up to escort me to the second floor.

It was all over in 45 minutes. My echocardiogram is normal. I called Joel and he picked me up and we headed to the Garden Cafe located in the Garden Pharmacy. I treated him to breakfast.

What started out as an easy week fast became a busy one. On the way to the echocardiogram, Farah, Dr. Jellinger’s assistant (endocrinology) called to set up a blood draw tomorrow and an appointment with Dr. Jellinger at 2:30 that afternoon. I’m back off Jardiance. Looks like I may be heading the insulin route.

Once I got home, I noticed a voicemail from the Neurology Department at Holy Cross. They previously put me on a call list for any cancellations for my neurological appointment on 30 April. They had an opening for Thursday afternoon at 2:30 pm. I took it. I have a morning chiropractic appointment so that should work out. I need some information about this neuropathy. It’s driving me nuts. Friday is the hydration infusion at 2:15. I also assume I will get a phone call from Hollywood Chrysler Jeep about my jeep. Probably not. It’s assuming the part needed comes in tomorrow.

Hopefully between my hematology/oncologist, endocrinologist, and neurologist, someone can tell me (1) why I have periodic energy crashes (2) what’s the story on my peripheral neuropathy – permanent or not and (3) will I have to go on insulin with epipen injections into the stomach area of my torso.

January 9th is the last treatment listed for me. I have a call into the infusion center to schedule more Herceptin and hydration infusions. I think they limit it to a three month schedule. Hopefully, I’ll be able to keep the Tuesday time period for Herceptin and the Friday time period for the hydration infusion.

Oh yeah, I hate compression socks. My itching is back so it’s back to Allegra. It’s still cold in South Florida with the temperature currently a chilly 70°F. Whine, whine, whine!

I may have overdone it on the black-eyed peas. I made a huge pot of them. When I put them on to soak, they almost moved the lid off the top of the pot as they swelled. I’ll be eating them for the rest of the year. That and generating massive amounts of gas from eating them.

Stay tuned!