This Year is Our Year for Success!

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  • PamS53
    PamS53 Posts: 1,936 Member
    edited March 2022
    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.
  • mdubbs1
    mdubbs1 Posts: 6,648 Member
    Pam - I'm so sorry for all the sadness! It's been a rough couple years for a lot of families!
  • Helene610
    Helene610 Posts: 2,831 Member
    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.
  • Helene610
    Helene610 Posts: 2,831 Member
    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.
  • PamS53
    PamS53 Posts: 1,936 Member
    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.
  • mdubbs1
    mdubbs1 Posts: 6,648 Member
    PamS53 wrote: »
    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.
  • mdubbs1
    mdubbs1 Posts: 6,648 Member
    Helene610 wrote: »
    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.
  • PamS53
    PamS53 Posts: 1,936 Member
    Happy Birthday, Maryanne! Enjoy the birthday lunch treat with your friends.
  • PamS53
    PamS53 Posts: 1,936 Member
    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.
  • Helene610
    Helene610 Posts: 2,831 Member
    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.
  • mdubbs1
    mdubbs1 Posts: 6,648 Member
    PamS53 wrote: »
    Happy Birthday, Maryanne! Enjoy the birthday lunch treat with your friends.

    We had a good time. Tied up a table at Applebee's for 4 1/2 hours. It was busy but not swamped so they let us alone.
  • mdubbs1
    mdubbs1 Posts: 6,648 Member
    PamS53 wrote: »
    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.
  • PamS53
    PamS53 Posts: 1,936 Member
    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.
  • mdubbs1
    mdubbs1 Posts: 6,648 Member
    PamS53 wrote: »
    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!
  • mdubbs1
    mdubbs1 Posts: 6,648 Member
    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!!!
  • Helene610
    Helene610 Posts: 2,831 Member
    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.
  • mdubbs1
    mdubbs1 Posts: 6,648 Member
    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!
  • mdubbs1
    mdubbs1 Posts: 6,648 Member
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  • mdubbs1
    mdubbs1 Posts: 6,648 Member
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  • PamS53
    PamS53 Posts: 1,936 Member
    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.