This Year is Our Year for Success!
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I got sad news about my cousin in NC who has been battling brain cancer that metastasized from a Merckel cell carcinoma under his left eye. It’s a very rare and aggressive type of skin cancer. Even though his cancer was found very early and he underwent all of the recommended treatments, it metastasized to his brain. He had a tumor removed that was the size of a medium sized orange, and then subsequent surgeries to remove scar tissue that grew in the area. He’s suffered several strokes as well. The news we got yesterday was that his brain stem is deteriorating and that there is no treatment for this. He’s lost the ability to chew and swallow food and he’s often just not really cognizant of his surroundings and the people who are with him. He and his family are deciding this weekend whether to insert a feeding tube or just move to protein drinks like Ensure and Boost. They will also be starting palliative care and discontinuing any further treatments for his cancer diagnosis. This is the cousin that my sister, cousin and I visited last fall.
My sister, cousin and I have decided to go for another visit. We plan to leave next Monday and probably return on Sunday. It’s a 2 day drive, so that will give us 3 days to be with him and his family. We plan to stay in a hotel this time to minimize the impact on the family from having guests. I’d love to stay longer, but need to be back here to attend a funeral for one of my best friend’s stepfather, who died last week.
And at the risk of being a Debbie downer, another of my cousin’s son lost his home and a lot of farm equipment in one of the grassfires that have been raging here in Texas over the past week. His sister and her family and their father all live in different houses on the same farm and were at risk of losing their homes as well but the wind changed just in time for their homes to be saved.
It’s been a tough week around here.0 -
Pam - I'm so sorry for all the sadness! It's been a rough couple years for a lot of families!0
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That such difficult news to get. I’m glad you got to visit your cousin while he still knew you and could enjoy a visit. My sister had a feeding tube the last few months of her life. It wasn’t that bad. My mother had one about 30 years ago and it was like night and day. Her’s was connected to a mechanical pump and it jammed a lot. My sister would have to disassemble it, clear the jam and hook it back up. My sister’s was a gravity feed in her abdomen. Bill would remove the plug, put special food in a tube, flush with water and then close it up. If your cousin’s swallowing is affected, they might consider the feeding tube. Safe travels on your trip.0
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Today was a running around day doing errands. I had six stops to make but I got everything done. Now I’m just going to relax and read.0
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My PT is going well, I think. I had my third session yesterday. Most of the exercises are easy, but tiring by the end of the hour. I also have exercises to do at home. I’m amazed at how weak my hand is. I was told to get some Theraputty to use to exercise my hand. Currently I’m using the extra soft level and struggling with it at times. My little finger is still useless, but I keep hoping it will begin to work again at some point. Some of the other exercises use 2 lb dumbbells and an exercise band, all of which I will take with me on my trip next week.
I’m dreading this trip, but I’m sure I will be glad I went. We haven’t received any updates other than that he has refused the feeding tube, which I expected would be his decision. He sips on an Ensure or Boost protein drink all day, but usually doesn’t finish even one a day. He’s losing more than a pound a day, so I really don’t expect him to last long under these circumstances.0 -
My PT is going well, I think. I had my third session yesterday. Most of the exercises are easy, but tiring by the end of the hour. I also have exercises to do at home. I’m amazed at how weak my hand is. I was told to get some Theraputty to use to exercise my hand. Currently I’m using the extra soft level and struggling with it at times. My little finger is still useless, but I keep hoping it will begin to work again at some point. Some of the other exercises use 2 lb dumbbells and an exercise band, all of which I will take with me on my trip next week.
I’m dreading this trip, but I’m sure I will be glad I went. We haven’t received any updates other than that he has refused the feeding tube, which I expected would be his decision. He sips on an Ensure or Boost protein drink all day, but usually doesn’t finish even one a day. He’s losing more than a pound a day, so I really don’t expect him to last long under these circumstances.
I remember that Theraputty. I had all kinds of hand exercise gadgets while I was rehabbing after my wrist surgery. (Probably got a little carried away with the gadgets. LOL!) I'm glad you're PT is going well!
I'm sure everyone will be glad you're visiting, even if the circumstances aren't happy ones.0 -
Today was a running around day doing errands. I had six stops to make but I got everything done. Now I’m just going to relax and read.
Sort of cool to be able to once again have "running around days" isn't it?
Today I've got to hunker down and work though. Tomorrow my best friend is taking "the crew" to Applebees for lunch for my birthday.0 -
Happy Birthday, Maryanne! Enjoy the birthday lunch treat with your friends.0
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I learned tonight that my cousin is not doing well at all, so my sister and I are moving up our departure to tomorrow morning. My cousin who had planned to go with us wasn’t able to rearrange her schedule to join us, so it will just be the two of us. In some ways that will make it easier, though it would be nice to have another person to share the driving and expenses. We are hoping to arrive before he passes, but not sure he will hang on that long. Mostly we want to be there for the family as we both feel that we said our goodbyes and told him how much we loved and appreciated him last fall on our visit. A sad time for his loved ones and those who love him.0
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Safe travels. I hope you make it in time but if not, your cousin already knows you love him. The family will take comfort from your presence.
Happy birthday Maryanne. Enjoy your lunch out.0 -
I learned tonight that my cousin is not doing well at all, so my sister and I are moving up our departure to tomorrow morning. My cousin who had planned to go with us wasn’t able to rearrange her schedule to join us, so it will just be the two of us. In some ways that will make it easier, though it would be nice to have another person to share the driving and expenses. We are hoping to arrive before he passes, but not sure he will hang on that long. Mostly we want to be there for the family as we both feel that we said our goodbyes and told him how much we loved and appreciated him last fall on our visit. A sad time for his loved ones and those who love him.
Have a safe trip! Just so sad all around.0 -
Arrived safely at our destination tonight after 2 very long days of driving. My cousin was very happy to see us, but we were very sad to see how much he has declined since our visit last fall. We aren’t sure how long we will be staying now. I guess we will play it by ear, depending on how the next few days go.0
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Arrived safely at our destination tonight after 2 very long days of driving. My cousin was very happy to see us, but we were very sad to see how much he has declined since our visit last fall. We aren’t sure how long we will be staying now. I guess we will play it by ear, depending on how the next few days go.
I'm glad you made it!0 -
Well, birthday splurge is over and I'm back on the diet today!
Right this minute, as I look out the window, it's SNOWING!!!0 -
I’m glad you made it in time that your cousin knows you’re there. Even though the visit has hard parts, you’ll never regret that you were able to be there for your cousin and his family.0
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The sun is out finally! I am SO ready for spring!
I managed to keep my birthday splurge eating to a week. It could have been (and often has been in the past) much worse! I'm back on course since Monday!0 -
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We’ve had a good visit with my cousin, extended family and long-time friends and tomorrow we will head home. We feel relieved that finally today he agreed to begin hospice care, which will be a huge help for his wife and daughters. He had been in denial about his condition and likely still is, but he finally understood today that even if he goes on hospice if his condition were to improve, he could then come off hospice and resume treatment. We all understand that barring a miracle, that won’t happen, but it was important to him to have the hope that he could resume treatment if his numbers improve enough. I honestly doubt that he will be alive a month from now, but I’m no doctor so it’s possible. He is eating very little and drinking very little either, and his weight loss is at least a pound a day, so it’s likely that his organs are already starting to shut down. But he was alert some of the time and able to speak some (although it’s very difficult to understand him), and there were flashes of his normal personality when he joked with us a couple of times. His wife told us that he had been very excited when they told him we were coming, and that made my sister and me both very glad we made the trip. It looks like our return trip will be through some nasty weather, but we will hope we are able to miss anything too terrible.0
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Weather reports along your route home sound pretty bad. I hope you can avoid the worst of the storms.0
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We drove for 13 hours today, through heavy rain at times, but no lightning or thunder, etc. We did have a strong crosswind all day and are hoping that will be calmer tomorrow. I may spend the night at my sister’s home tomorrow night so I don’t have to face Dallas traffic during rush hour when I’m already tired from driving all day.0
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We drove for 13 hours today, through heavy rain at times, but no lightning or thunder, etc. We did have a strong crosswind all day and are hoping that will be calmer tomorrow. I may spend the night at my sister’s home tomorrow night so I don’t have to face Dallas traffic during rush hour when I’m already tired from driving all day.
13 hours? WOW!!! YOu must be exhausted. Have a good rest of the trip home!!0 -
Ophthalmologist appointment went fine. Hopkins brings their top specialists to a suburban outpost one or two days a week and they cram a zillion patients into their day. You're usually there 4-5 hours minimum. One day it was so bad they brought in bottled water and snacks.
They redesigned their space and it's now a veritable warren of hallways and small seating areas. I felt like volunteering to make and put up some signs. Nothing like seeing one of the top docs in the area wandering the halls going "Ms. Smith? Ms. Smith? Ms. Smith?" Or having highly trained technicians stop to take patients to show them the way to the restrooms.
I really really really hate the visual field test. I told the doctor I'm bad at it. He showed me the results and said actually you're good at it. I find it difficult to keep my mind from trying to figure out a way to outsmart it. I asked if anyone was working on a better test. The doc said, with a straight face, "I have a colleague who's been working on it for decades". Not sure if he was joking (he's not much of a joker but over the years if you come back when you're supposed to he loosens up a little.)
I wonder how many more years they're going to have me come back. They write down "suspicion of glaucoma" and apparently no one ever questions whether at some point we might not be so suspicious any more. LOL!0 -
I'm working on cleaning out CROM's second storage unit. I wasn't sure whether we were going to ever do another flea market but when I decided we aren't, I needed to get rid of some of my stuff I'd decluttered out of my house. I've taken a bunch to Goodwill. Wow, is that an experience. Actual hours bear no resemblance to what's on their web site. Folks are surly. They are very picky in what they will take but then they just throw everything into large cardboard boxes. You could hear the dishes break. I thought I was doing a good dead but I might as well have gone to the dump.0
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I’m home after my marathon driving trip, and very glad to be at home again. Although I’m glad I went, I’m beyond tired. Hopefully I can take my time over the weekend getting unpacked and resting.0
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Welcome back. Driving through rain must have been stressful. Glad you had a safe trip home.0
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I’m mostly rested, unpacked, and back to my normal routine now. We got word yesterday that my cousin’s wife, who is his primary caregiver, broke her foot yesterday and will be in a non-weight bearing cast for at least 6 weeks. They contacted hospice to see if this development would qualify them for any additional help but were told it did not. They are scrambling now to figure out what to do. He requires help to transition from the bed to a chair, etc. and she will not be able to do it. Both of their daughters are local but work full-time, although both have applied for and been approved for FMLA leave. They wanted to delay taking it until later, but may not have a choice now.
Tomorrow I will attend a funeral for the stepfather of one of my best friends. He was diagnosed with pancreatic cancer last December. He took a couple of rounds of chemo, but quickly deteriorated.
Our weather is beautiful today, but we are expecting thunderstorms tomorrow. I’d better make the most of the sunshine today!0 -
Oh, Pam, that family just can't catch a break! Taking 12 weeks of unpaid leave to care for your father would be quite a loving gesture.0
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I had my annual oncology visit today. Another visit where she says "yep, the nodules in your lungs still haven't changed after all these years."
First time I've been on the Baltimore Beltway going south in probably a year. Looks just the same. LOL!
We just found out the millennials and kids across the street, one house down have moved out (to her mother's; bet that's fun; NOT!) so they can completely gut their house. Oh, joy, a year or more of trucks and workmen (have to brush up on things like "please move your daggone truck" in Spanish)! The folks next to us will have it the worst but it likely won't be fun for us either. That house is the original house in this neighborhood, the one the developer lived in while the rest of the houses were built. I've never seen inside but I wouldn't have thought it was that bad. Maybe they just watch too many of those home remodel shows on TV (one of which was playing in the oncologist's waiting rooms - REALLY?).
Warm day here but overcast. I'm realizing I need to start working on using up some of the food/supply stockpiles in this house. We're overrun!
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