Month: October 2023

20 October 2023

I’m sure I’ve probably had a worse two days in my life but I can’t really think of them. The one time that possibly rises to the occasion was as a kid with the flu. Most people who think they have the flu simply have a bad cold. The flu debilitated me for two weeks. I was so weak, I couldn’t get out of bed for one week. Another possible time was when I was (later) diagnosed with Legionaire’s Disease while a freshman at Ole Miss. I would count my last hospitalization where Holley kept watch with my second surgery due to the mastectomy but I was so far under with pain killers I don’t remember that, I depend on Holley’s relating of the details.

I haven’t been able to drive for the last two days and if it hadn’t been for my friends, I would have missed three appointments. Keith carried me to the cardiologist, Michel picked me up for the blood draw for my wellness and delivered me home, Dianne delivered me to the hydration infusion and Barb picked me up, bought me soup, sandwich and strawberries at Whole Foods and took me home. If they didn’t have prior commitments, everyone jumped to pitch in. I am so appreciative.

Pat was my nurse again and I told her I was like a bad penny – I kept showing up. In talking with her, she said Herceptin would be much easier on me. When I asked about the numbness in feet and hands, she said some people got over it, some people had residual effects and some people never lost the numbness. If I had know that beforehand, I’m not sure I would have gone through chemo.

As it is, I’ve barely been functional these last two day. I can barely walk, I stumble all the time, my appetite is gone and, of course, the diarrhea is back. Also while talking with Pat, she signed me up for several more hydration infusions. She said it would make life easier. Dr. Velez had not done that. That’s the type nurse she is. If she thinks something should be done, she takes the initiative and does it even without thinking.

I had the soup Barb bought me for dinner tonight. The sandwich is for tomorrow lunch and the strawberries are for breakfast. I fully intend to do my best to recuperate tomorrow. The last two hydrations did not allow me to bounce back like the previous ones. I’ll take another Xanax tonight. I did get plenty of sleep last night but it didn’t do me any good physically – I was a wreck.

Farah, Dr. Jellinger’s nurse called in two prescriptions for me: prednisone and Jardiance. The prednisone is because Dr. Jellinger is concerned with adrenal drop if I come off Dexamethasone too early. I’m to take prednisone twice a day for 5 days, once a day for 5 days and then one every other day for 10 days. During one of those off days, I’m to report for a blood test to measure how much sterol I have in my system.

Because I am on Herceptin for a year, Dr. Jellinger is concerned about heart failure with me – an additional complication of diabetes. Jardiance not only lowers your blood sugar and A1c but also helps prevent heart failure. Dr. Tepper, the cardiologist, didn’t offer any resistance other than saying the effects of the drug have not been studied for any length of time. The bad news is the one prescription is over $100.

The one problem with Jardiance is urination. Farah told me I would be going to the bathroom more frequently. I told her that was not possible. She laughed and said I might need a catheter – she was joking. In any case, I’m to drink tons of water in the morning and during the day but not at night. Any time I have to urninate, I’m to use baby wipes on (as the blood draw nurse said today when she wanted a urine sample) my “manly parts.” There’s a risk of urinary infection otherwise.

Can you see why I think this is getting towards the ridiculous?

Hopefully, I’ll be better the coming week. Keep your fingers crossed for me. Sorry this has been such a downer.

Stay tuned!

19 October 2023

It was a very rough night. Everything hurt: hands, legs, feet. I didn’t get any real sleep all night. That last Taxol treatment hit me hard yesterday afternoon and I’m a slug today. So much so I put out a call for help from friends for the next two days.

Today I have to go see the cardiologist. I wanted to do telemedicine but apparently that’s not an option with this medical group. Keith is going to take me in for my 1 pm appointment.

Tomorrow I’m scheduled for a blood draw for my wellness check next Friday. I also have a hydration infusion scheduled for 2 pm. Michel will pick me up for the blood draw that morning (fasting, of course) and then Dianne will take me to the infusion appointment and Barb will pick me up from the infusion. I just don’t feel safe driving myself. I put out a messages blast and everyone responded if they could or could not make it. I really appreciate all the support I have from all these friends.

Now I just need the energy to get up, shave and shower and get dressed for the 1 pm today with the cardiologist. My endocrinologist wants me to raise several questions with Dr. Tepper.

Keith arrived a little early and we made it to Dr. Tepper’s office during their lunch break. We had to wait a while and even then, unusually, the meeting with Dr. Tepper went longer than usual.

Dr. Tepper is having back problems and also, like me, has peripheral neuropathy. We commiserated, he listened to my heart, checked the reports on my echocardiogram and MUGA scan and pronounced himself satisfied with how things are going. He also had no problem with the recommendations of Dr. Jellinger.

Keith drove me back home and I immediately crawled into bed for a nap. I’m still wiped out from Tuesday’s infusion. Hopefully the hydration tomorrow will help but I can’t help but be happy that the Taxol torture is over.

Stay tuned!

16 October 2023

It’s been a rough day. I crawled out of bed around 6:30 am, had coffee, cereal and read news online and went back to bed and slept 3 hours. The pain in the joints of my hands and knees and ankles kept me awake last night. So much so I texted Dr. Velez and asked if I could take Tramadol or Gabapentin for pain relief. He recommended Tramadol as the better choice and I’ll definitely take a dose tonight. I can take it once every 8 hours.

I later called Joel and asked if he could take me in tomorrow for my last Taxol treatment. He said he was free which means he’s adjusted his schedule to take me in. I’m just not sure I could drive safely.

That’s also why I called my endocrinologist, Dr. Jellinger, and asked if we could do a conference on the phone or computer. The secretary at the front desk checked and agreed. My appointment was for 2:30 pm and he finally called me on the phone at 3:30. I really didn’t mind. What I like about him is he talks to his patients and is in no hurry to leave them. I usually spend at least an hour with him in his office. He forgot his laptop at home so we did the consultation on speaker phone. He, as always, gives me a lot of information, mostly technical because he knows I understand most of what he’s saying.

He was very concerned my A1c had shot up to 8.6. On June 19th it was 7.8. After explaining they were giving me 4 mg of Dexamethasone (a sterol) the night before and probably the same amount IV during chemotherapy, he agreed that was the problem but alerted me to the possibility of adrenal withdrawal symptoms if they stopped the dexamethasone after the last Taxol treatment. He wants them to taper me off the drug and not go cold turkey. He suggested 1-2 weeks of prednisone to wean me off dexamethasone. Dexamethasone hangs around for long periods of time.

Dr. Jellinger also warned me my glucose levels might not ever go down at all once I successfully come off dexamethasone. He said not to worry because I’m on the most basic of treatments for high glucose (Metformin) and there are many, many other treatments that can compensate for that.

He’s also concerned about the Herceptin treatment every three weeks until I complete one year (I started it on June 5th). I told him my MUGA (Multigated Acquisition Scan – similar to an echocardiogram) reading was 62% and he said that was good but there are problems with any reading. One problem is HFPEF (heart failure preserved ejection factor) which means my reading could drop to 50%, still be in the normal range, and yet lead to heart failure. He mentioned that my low hemoglobin levels could cause a drop in efficiency but it could also be a serious heart issue. At least 62% is good for now.

Then there is HFEF (heart failure ejection factor) which the efficiency drops to 40% or less. That’s even more serious but also why they will continue to do echocardiograms and MUGA’s.

He would like me to go on Jardiance or Farxiga if my MUGA efficiency drops below 60%. I’m to talk with my cardiologist, Dr. Tepper, on Thursday and tactfully bring up the recommendations of Dr. Jellinger. Dr. Tepper is more of a minimalist and Dr. Jellinger is more proactive on issues. They agree to disagree sometimes. Another possible drug is Invokana. All three: Jardiance, Farxiga, and Invokana have the added benefit of lowering A1c.

Dr. Jellinger mentioned some signs of problems with the heart are shortness of breath and lack of endurance, both of which I currently have. I’ll also mention that to Dr. Tepper on Thursday.

I’ve noticed my eyesight seems to be changing. Jim recommended Elena Roth with Bascomb-Palmer in Plantation. I tried to get an appointment and when I finally reached a person on the number they said call, she transferred me and the call dropped.

I then called my primary, Dr. Dunhill, and he recommended someone from Holy Cross. I have an appointment with Zuzana Hrdlicka on Monday, October 23rd for a general exam. What I’ve noticed is lights seem dimmer and it’s almost like those old movies where they put vaseline around the lens of movie cameras to get a softened effect. From the general exam I can at least get an idea if I need cataract surgery. Chemo has a myriad of effects on the body.

Toes and fingers are still numb. Nose bleeds every morning along with runny nose. Absolutely no energy for anything. Back to little or no appetite. Itching is back. Joint pain, shortness of breath and I alternate between diarrhea and constipation. Vertigo continues to be a challenge along with bloating and wacky taste buds. A really weird thing is some mornings my fingers feel “fat” and bloated and other mornings my fingers feel slender and normal. My question is which of all the symptoms will eventually go away and return to normal and which I will have the rest of my life?

Stay tuned!

15 October 2023

It’s been a rough week. I knew chemotherapy was cumulative but it’s been a little more cumulative than anticipated this week. I’ve mentioned the numbness in toes and fingers but what has caused me real problems the last two nights is the aching in my joints: fingers, ankles, knees. It’s been really painful and it keeps me a wake.

In an attempt to control it last night I took two Advil, one Tramadol, one Claritin and one Xanax compliments of Fred’s Pharmacy. The drugs finally kicked in sometime after midnight (I went to bed at 8:30). I guess the only saving grace is that my diarrhea seems more under control. I’ve mostly had solid stool with the exception of one diarrheal episode yesterday and to be honest, that was a relief since I’ve tended more towards constipation than diarrhea.

One thing I’m trying for the numbness (and cold feeling) is I bought a pair of gloves for me and Kurt that supposedly keep your fingers warm and also allow you to use touchscreens.

Mine are XL and I ordered Kurt a pair of large. Mine came today and Kurt’s should be here Monday. They are very comfortable even though I’ve not tried out the touchscreen feature yet. For the toes, I bought us both a pair of Bombas Gripper Slippers. These have pads on the bottom that grip the surface you on which you are walking. Years ago Tanis bought me a pair of cold weather socks with this feature and I constantly wear them around the house because of the perceived cold from the numbness – along with arctic dress.

I generally change into a long sleeved knit shirt and a long pair of gym pants and the socks. The socks are pretty much worn out, thus the order from Bombas. At night, I start out with the down comforter on me and only later in the night am I warm enough to throw the comforter off.

I’m a little concerned about the last Taxol treatment on Tuesday and what it’ll do to me next week. Usually, after a Taxol treatment (with a liter of saline) I feel decent until Thursday. I’ve felt lousy all week and by the time Friday rolls around with the hydration treatment, I need the hydration. Usually, after the Friday treatment I feel great. Remember the deep cleaning I did on the house after one such treatment? That went by the wayside this week. Friday and Saturday were pretty low physically.

The numbness continues and it’s causing me problems picking things up with my fingers and even walking. Vertigo continues to be a problem and I stagger around the house bumping into things right and left and I don’t even have the benefit of having cocktails to cause it.

I really have an appetite but nothing seems to taste good. Last night I opted for barbecue beans from a can. Bread works for me and I did make some canned cinnamon rolls. My nutrition is for the birds. I take the Enterade and when I can remember it the high protein Ensure. I try to hydrate with coconut water which actually tastes good to me.

I was pretty much a couch potato yesterday after washing clothes and cleaning at the house. At least there were some interesting football games on. Hopefully, this next week will be my nadir and when I switch to every three weeks of Herceptin, things will begin to pick up.

Tomorrow I face the music with my endocrinologist. I dread to get the A1c report since my blood sugar has been all over the place with all the sterol they give me with each chemo.

Thursday is an appointment with my cardiologist, Friday is a blood draw for my annual wellness check with my primary and hydration in the afternoon. On the 24th, I have an office visit with Dr. Velez to map out the next year of treatment with Herceptin and then on the 27th I have my wellness visit with Dr. Dunhill. It’s a good thing I ‘m retired or I wouldn’t be able to juggle all these appointments.

By the way, I got my Medicare Summary Notice for the first chemotherapy and hydration therapy treatments this week. The August 21st chemo was $25,385.10. The Taxol and Herceptin drugs alone were $20,258.15. The other $5k was getting ready to inject the drugs.

The hydration infusion by itself was a bargain at only $6,268.65. That included the blood tests.

So far, the Medicare statements run from August to September and don’t include the month of October. August alone was $40,716.00. My share of the bill for August and September would possibly be $1,122.31 but the supplemental policy took care of all that. I’m so lucky to have Medicare and an excellent supplemental policy.

I didn’t feel like going to the grocery store today so I ordered delivery from Whole Foods. You know I don’t feel well when I depend on someone else to select my food.

Stay tuned!

13 October 2023

Ugh! Another bad night and lack of sleep. I took two Advil PM in hopes of getting some rest but either they are too old or they just didn’t work. It looks like I’m back to Xanax before chemo and infusions. To make it worse, I was totally stopped up last night. My nasal passages just didn’t want to cooperate. I’m dragging today and probably will be until I get a boost from the infusion this afternoon.

I did manage to clean the pool filter and spray for weeds. That was about all I was able to accomplish. The weeds get out of control in a few days’ time and it’s a constant battle.

UPS is updating me frequently about the arrival of my new iPhone. First it was out for delivery, then out for delivery between 7 am and 9 pm and now it’s out for delivery from 4 pm until 8 pm. Take your pick. My money is that it arrives either tomorrow or Monday.

Everything at the cancer center was late today. Pat was my nurse and I like her and she’s very competent. Not so the person that ended up helping her. If you don’t hear from me for the next few days, I’m probably in the hospital with sepsis. The person helping Pat dragged the tubing for the IV across the floor and the nipple that goes into my port was on the floor. She was about to insert it when I started to correct her and she said “I’m gonna clean that off.” My thought was why did you let it drag across the floor in the first place. She did clean it with an alcohol wipe and then used the same alcohol wipe to clean the port entrance. Some people have no concept of sterile technique.

The good news is the only thing wrong with my Complete Metabolic Panel was high glucose (always) and low protein. Everything else that is normally out of wack was normal. They didn’t do CBC today. Even with just the saline and magnesium (always low) it took 3 hours for the infusion.

I told Pat that Tuesday is my last Taxol session. She went out of her way to tell me that the Herceptin will be much, much easier on me. About the only thing to expect is some fatigue during the 3 week intervals but that I should be able to handle that much better than the Taxol. That gives me some hope. Maybe I can also hope for some reversal of the side effects of Taxol.

After the infusion, I ran a pair of gloves up to Kurt on the 6th floor of Holy Cross. He’s had some real problems and this is his third week in Holy Cross. Both of us complain about how cold our hands and feet get. I took him a pair of my lightweight hiking gloves for the rest of his stay and I ordered us both a pair of woolen gloves that will allow you to use electronic devices. I don’t know if they will work but if they do, it’ll be worth it not having to pull off gloves to make a phone call.

Amazingly, UPS delivered my phone just now (5:50 pm). I’ll probably spend Saturday getting it set up and my old iPhone ready to be returned. Exciting times!

Dialecta

Holley mentioned another phrase using the word carry as in “I’m fixing to carry y’all to the store.” Then she mentioned using the word buggy for shopping cart. I had forgotten about buggy.

Somewhere I read that the Southern accent is the most closely related to the English accent. I’m not sure that is true but there are hints of it here and there.

Stay tuned!