I removed the introduction to force the latest status above the fold
May 28, 2025
cancer is taking a few days odd. I told it I’m too busy to deal with it.
My rash is fading, my fingertips healing, my fingernails are holding steady, and my BMs are normal.
Shoo, cancer. Take a week or more off. The next event will be July 17. I’ll update status around July 10.
May 26, 2025
The leg rash looks about the same, except it has expanded up to my groin. Rita got concern when she saw it, but I’m convinced to not panic about this. I feel this whole rash thing has been diagnosed incorrectly. I’m not sure the treatment of prednisone is valid. I do think time will heal it, or make it worse, which is risky. Don’t panic.
I took the prednisone and will put do so for the five days of the RX. It does give me a high, and I would love to see how I play pickleball on it, but, that borders on being stupid. I do not need to stress or hurt my body any more. I need to get and stay healthy for my upcoming CO trip and then lung surgery.
I blew away my plan to cut grass and, instead, went shopping for the apartment furnishings. We went to Miller Furniture in DuBois and had a wonderful time. Rita love the day.
We went in the hot tub and the rash looks like it is stopped growing, but I will admit, it looks concerning.
Don’t panic.
When I wrote this entry (early in the morning on 5/27), the rash may be smoothing out. There are no new symptoms regarding the rash. I dread if it starts to turn blistery or itchy.
My GI track may be getting back to normal. It appears to be affected by what I eat now, so I need to treat it well by eating well.
My weight has crept up to 185 area. I want to stay there and feel my body asking to go to 190 (my appetite is wanting attention and asked me to eat!)
May 25, 2025
Nothing much to report regarding cancer updates. No change is good?
I spend the day doing my writing hobby. Went to TWJ block party and read ‘Death by Chocolate’ piece. Then went to the Burrow to discuss Jung. I needed a break from cancer and caregiving.
May 24, 2025 very pm
All my planning I did early this morning went south when I noticed a new rash on my legs as I got out of the shower.
< skip a lot of detail ….>
My primary Doc sent me to the ER. Something seriously risky and rare called Stevens-Johnson’s syndrome. On the way there I dropped Rita off at our friends Bob and Vera Bonnet.
A woman named Jade, a traveling doctor, happened to be there when I pulled up to Bob’s porch. Jade is a friend of Bob and Vera.
<skip details>
Jade went with me to the ER, Rita stayed at Bob and Vera’s.
<skip details on the ride – skip, communications to family and key friends. Also skip lots of doctor talk with Jade and other conversation on the way to the ER>
At the ER, as I was walking to room #y, I saw the same doctor, Sean, who treated me on my Monday’s ER visit. We said ‘hi’ to each other. His response was: “Back, again?”
Jade went with me to room #y and didn’t let on that she was a doctor.
<skip boring part>
Two hours, blood tests, lots of text messages and few phone calls later, Sean comes into the room to discuss his findings and conclusions. My daughter, Johanna, happened to be on a call with me when he walked in. I put it on speaker and laid it on the bed.
<skip 30 minutes of medical terms, Platelets test results, questions, logic challenges, more conversations, more questions, Sean pegging Jade as a doctor (her OR shoes gave her away), Fred challenging questions, Sean recommendations, Fred asking about the risks, and, frankly, a bunch of other non-ER questions – like why don’t I just go off all this drugs-shit and purge my body clean? (Sometimes, can talk like Adam.) Fred got a lesson on risks.
<skip getting distracted >
It all ended with all of us discussing how humans get their values and parenting differences. Totally off topic. Sean and all of us, enjoyed the intellectual conversation so much, nobody wanted it to stop.
I suggested we might want to get back on track about why I was there.
“Oh, yea, right, we probably should.”
I was sent home with a prescription for prednisone, and a debated conclusion that the rash was not SJS. (I actually had two rashes.) One (not the legs one) was most likely caused by the high amount of amoxicillin I was prescribed on my Monday’s visit. “Stop taking that now!”
The leg rash (SJS – the risky rash) was most likely caused by the chemo drug interacting with one of my blood pressure pills, maybe. They listed a number of possibilities but it didn’t matter. The treatment was the same – take Prednisone. And it still could be serious. A 10% fatal risk.
I pointed out that I’m 81 and walk around living a 7% fatal risk. Sean never looked at it quit like that.
We left. Sean had made some new smart friends and he smiled as his day just had a few hours of fun.
We stopped at Bob’s to pick up Rita and drop off Jade. We proceeded to get totally distracted with life and ER speak. We spent the next four hours drinking, telling stories, laughing off our kitchen stools, and having fun that many of us had not had in weeks.
After all it was Bob Bonnet’s house.
I drank three light Dewar’s and kept humming to the Billy Joel tune; “It’s my life ….. Leave me alone!”
One the way home we stopped at Walmart, got the RX, picked up some bad Chinese take out food nearby, and went home.
As I retire late, I still have the rash. It was suggested I wait until tomorrow AM to start the Prednisone. That doctor suggestion, I’m following.
{And this is the short version!}
May 24, 2025 very am
This is going to be short because I have other topics I need to address.
Chemo side effects are still with me: The finger-nail thing is still there. That sucks! Diarrhea is still there but now instead of liquid brown water, I pass a stream of dark brown liquid manure. Uck! I’m trying to not worry about the color and if it is blood some place in my GI track.
The bottoms of my feet are still sore and the back of my hands and arms are developing the sun-burn type of rash.
My lower lip is still sore and it looks like I either took a punch there or I have a cancer that is pissed off.
Today would have been day 2 of cycle 2.
The good news is that I can now control not pooping my pants. I can sleep 3 – 4 hours a night. I can think like a project manager again. I can control my tears 80% of the time. And my care for Rita is 80% back. I can also deal with Rachel being sick and not available, fix a simple left-over meal, plan my future better, and not sound pissed off 80% of the time.
All-in-all today, cancer-wise has confirmed I don’t want to ever take that Chemo treatment again. That has changed my thinking from a future with a cure to recognizing I’m going to die of cancer and let’s make the best of the days I have.
I now need to understand palliative care vs hospice care better.
Oh, I also realize, that I am NOT going to get high quality cancer care in Indiana County.
May 23, 2025:
When the tips of your fingers hurt and your fingernails are loose, typing on a keyboard becomes a struggle.
WTF?
Today would be Day 22 of my first chemo treatment, and I would be starting cycle number two. I’d be taking the pills this morning.
That’s not going to happen.
If I’m still feeling side effects this strongly on Day 22, how can I possibly get better by taking more pills today?
My lips are still sore. My face itches, and the skin is peeling. I still have diarrhea. My feet hurt so much that it changes the way I walk.
This past week, I’ve been questioning quality versus quantity—quality of days versus number of days. There are no easy answers here.
I’m starting a bucket list. It’s something I’ve never managed to do, for some dumb reason. I’ll be seeing my therapist today, and this will be the topic of discussion.
May 23, 2025:
I’m still improving. This morning (3:00 am), I feel about 75% better. That means I can eat mild foods and drink mild liquids without paying the price of uncontrolled diarrhea. I’m still very weak and find that I’m not physically capable, like I was before starting Zaloda.
I’m still trying to figure out the future of me taking this drug. I’m not sure if Dr. Ramineni is the right doctor to advise or console me.
I’ll consider myself 100% when I can play pickleball and get six hours of sleep a night.
Finally, a non-cancer update: We (Rita, Rachel, and I) interviewed a woman named Annette who does caregiving. I’ve been considering hiring another caregiver to cover when Rachel can’t and to serve as a backup.
Rita is fighting me on this, thinking that she will be monitored more, and she threatens to leave me if I do hire someone. We’ve had three battles in the last three days about this. The meeting happened last night at 7:00 pm. It didn’t start well. Annette and Rachel chatted about when they crossed paths before, and when that conversation died down, I started setting the expectations for the meeting. Annette then asked about Eric Harrold.
She was doing the classic Western PA probe to figure out which family you belong to, so she could get an instant sense of what kind of person you are. She and Rachel had just done that, and Annette was trying to place Rita and me.
Since Rita wouldn’t participate in the conversation, I got the task of answering Annette’s question about what happened to Eric. I knew this was not a topic Rita wanted on the table, but Annette seemed persistent in finding out. Later, we found out she was Eric’s landlord when he rented a trailer/house on Covode Road.
I think there might have been a possibility that they had a “thing” going at one time. Rita actually forced the topic to be dropped when she said, with steel in her voice, “Can we drop this topic? I’m not comfortable with us talking about Eric!” Her body language told me she was super pissed, and I happily agreed to move on.
I asked Rita if she wanted to give Annette a house tour. She said, “No, you can do that!” I asked Rachel to do it and tried to read Rita’s body language.
She was totally pissed off. She didn’t like Annette. She had no reason for it; she was just pissed off. It was almost like sundowning behavior. I got in Rita’s face and said, “This is not about you. I NEED the HELP!” I got her off her pissy-pedestal, and she agreed to try to be nicer.
The rest of the meeting went much better. We agreed to try a day with Rachel working the same day as Annette to give her an introduction into the Wilbur/Nichols family dynamics.
Next Thursday, May 30, they will both work from 8 am to 4 pm, unless I send one or both home earlier.
There are scheduling challenges with using Annette, and I have an uncomfortable feeling about her that I need to figure out. If she and Eric had a “thing,” I need to find out if that’s affecting her ability to care for me or Rita. And can I trust her?
May 22, 2025 :
I’m still improving. This morning (3:00 am), I feel about 75% better. That means I can eat mild foods and drink mild liquids without paying the price of uncontrolled diarrhea. I’m still very weak and find that I’m not physically capable, like I was before starting Zaloda.
I’m still trying to figure out the future of me taking this drug. I’m not sure if Dr. Ramineni is the right doctor to advise or console me.
I’ll consider myself 100% when I can play pickleball and get six hours of sleep a night.
Finally, a non-cancer update: We (Rita, Rachel, and I) interviewed a woman named Annette who does caregiving. I’ve been considering hiring another caregiver to cover when Rachel can’t and to serve as a backup.
Rita is fighting me on this, thinking that she will be monitored more, and she threatens to leave me if I do hire someone. We’ve had three battles in the last three days about this. The meeting happened last night at 7:00 pm. It didn’t start well. Annette and Rachel chatted about when they crossed paths before, and when that conversation died down, I started setting the expectations for the meeting. Annette then asked about Eric Harrold.
She was doing the classic Western PA probe to figure out which family you belong to, so she could get an instant sense of what kind of person you are. She and Rachel had just done that, and Annette was trying to place Rita and me.
Since Rita wouldn’t participate in the conversation, I got the task of answering Annette’s question about what happened to Eric. I knew this was not a topic Rita wanted on the table, but Annette seemed persistent in finding out. Later, we found out she was Eric’s landlord when he rented a trailer/house on Covode Road.
I think there might have been a possibility that they had a “thing” going at one time. Rita actually forced the topic to be dropped when she said, with steel in her voice, “Can we drop this topic? I’m not comfortable with us talking about Eric!” Her body language told me she was super pissed, and I happily agreed to move on.
I asked Rita if she wanted to give Annette a house tour. She said, “No, you can do that!” I asked Rachel to do it and tried to read Rita’s body language.
She was totally pissed off. She didn’t like Annette. She had no reason for it; she was just pissed off. It was almost like sundowning behavior. I got in Rita’s face and said, “This is not about you. I NEED the HELP!” I got her off her pedestal, and she agreed to try to be nicer.
The rest of the meeting went much better. We agreed to try a day with Rachel working the same day as Annette to give her an introduction into the Wilbur/Nichols family dynamics. Next Thursday, they will both work from 8 am to 4 pm, unless I send one or both home earlier.
There are scheduling challenges with using Annette, and I have an uncomfortable feeling about her that I need to figure out. If she and Eric had a “thing,” I need to find out if that’s affecting her ability to care for me or Rita. And can I trust her?
May 21: 6:15 am
I’m still on the recover road from the side effects of taking the oral Capecitabine. I was on day 13 (May 14) of the medication when I decided I had to stop. The side effects were just to intense. I had diarrhea for three days and it was not being controlled with over-the-counter medication. I had gotten a call from the lung surgeon’s office asking me to stop it 4 weeks prior my surgery and since I was only one day away for my week off, I decided to stop it immediately.
The side effects didn’t go away as fast as I had hopped and on May 19, I checked myself into the ER to fix the dehydration due to side effects. I felt if I didn’t get help, I would have a serious situation at home, knowing Rita would not be able to deal with.
In the ER, they tested the various conditions and after 6 hours sent me home after giving me an IV and some medication to treat a possible mild diverticulitis. In reality, the ER doc called the cancer center and found out that my side effect was the most common and what they saw was normal for those taking the medication.
This raised a few serious questions about taking chemo and having the quality of one’s life compromised so badly that you ask why are you taking this med? The good news the lung surgery date allows me to kick the can down the road until after that surgery.
The logistics of getting to the ER, arranging someone to help Rita and get home was complicated with the fact my primary care helper, Rachel had a sick kid and could not help. I finally took up Jesse’s offer to come for the night and Jen was able to come too since she was off work that day. I hated to disrupt their lives, but needed them there overnight in case the ER found something that would require me to stay overnight.
I had not been able to adequately care for Rita for the past few days, but Rachel’s presence filled in for me. When she bailed, it became a more serious situation.
Today, 20 hours after ER, I feel somewhat better, but still very weak. I have some simple small tasks to do to enable Trevor to move to the next project on his list and find I am unable to work like I use to before the Chemo routine. If I was at 25% of my capacity yesterday when I went to the ER, today, I’m at 50%. I can’t play pickleball, I can’t move simple easy things around by myself, and have to space my work to 5 – 10 minutes of simple tasks time – like doing dishes.
I need better backup plans and need to follow up on getting more help than just Rachel. Rita is fighting me on this since she sees it as a control issue. Oh, the joys of caregiving.
2 replies on “Fred’s Cancer Status”
This is a better solution than using Google Docs. Or is it?
I have the power to edit this comment, Approve it, or trash it.
This is a reply to the comment I left