Welcome to my roller coaster! The last two weeks have been like the Crazy Mouse on the Boardwalk of Wildwood, NJ back in the day!
Last week we got some good news from Texas Oncology. The results of his latest PET scan showed that the node has decreased in size form 2.8 mg to 2.3 mg, and it's not absorbing much of the dye! Good news to most folks, but not to Mr. Negative! He HAD said if he'd gotten good news, we'd make plans for a Carmel trip. Not anymore! He's now in fear that "something" will happen to him and he won't be near his doctors. OK, so I can talk until I'm blue in the face to try to convince him that doctors have practices ALL over California! And that his own doctors are a phone call away. Nope, that's not going to work. And I've seen his negativity at work in the past. He got himself so sick over worrying about his dad's 100th birthday and the fact that he was going to miss the Carmel trip because of it, that he had to be hospitalized for a few days. So I'm just not going to try to talk him into the trip.
The memory issues come and go. Sometimes he can't even change the channel on his remote and has to get me to do it. I don't mind at all except it hurts my heart to see him failing.
Yesterday's infusion went pretty well. Problem was, it takes SO long to get the results from the labs and the Erbitux from the pharmacy - nearly an hour and a half yesterday. But good news was, his magnesium levels were good so he didn't have to have a magnesium infusion.
One thing I've notices in the last few days - and it might be seasonal change - is that he's far more grumpy that normal - for him. He's always been negative - that's a given, but he's pretty much in control of his temper. Not so the last few days. And so while typing this through tears, I'm trying to compose myself. I definitely do NOT want him to become the mean, miserable man his father was and I do my best but boy, I could use a rest!
Signing off for now.
Saturday, March 31, 2018
Sunday, March 18, 2018
Rough!
That's the word for it - ROUGH!! The last two and a half weeks have been such a roller coaster! Today is Sunday - a day of rest! Yeah, right! Suffice it to say, Jay is a spoiled brat! I call him My Toddler and Dr. H said that's true but he'll never grow up!
The events of the last few weeks have been hard on me and I react and then feel horrible. My sweet neighbor Lana has been dealing with her husband's dementia for nearly nine years. She keeps telling me NOT to feel bad as they don't remember, but I remember and I feel bad.
Jay had a PET scan on Tuesday at noon which is hard on him, but I think it might be harder on me. He can't have ANY carbs for 24 hours prior to the scan and the day of the scan nothing but water for six hours. After the scan, we came home and he made a PB&J sandwich as he wanted to go to Remington's for dinner - their Tuesday Special is his favorite. We got to Remington's and he ordered chowder and the Special. He ate the chowder and when our entrees were served, he took a bite and sat back kind of in a stupor. Joyce, the manager, noticed and knows his illnesses. She came right over and said she'd box up his meal. I asked her to box up mine as well and off we went. The Lemonade was that dinner was ready in the refrigerator for Wednesday.
On Thursday, he decided he wanted corn on the cob with dinner and asked if he could go get some. Since it was midday and the traffic was minimal, I gave him permission. He came back with two ears of corn, one can of baked beans and TWELVE packages of Tate's cookies. By Saturday morning, there were only six packages remaining so I hid them. I'm not denying him his cookies or candy but one he gets a taste, he mindlessly eats away! And we know that sugar feeds cancer!
Friday was chemo day with another two hours of magnesium. He was craving a burger so that was dinner and unbeknownst to me his dessert was a couple of packages of cookies.
Saturday morning I decided to descale our Cuisinart coffee maker and told him to get his coffee fix and it would be a few hours before it would be ready to be used. So, at 10:00 or so, I started the process - not mind-boggling for sure, but time consuming. DESCALE was displayed after the first go round and instructions say to do it again, so I did. After the second go round, DESCALE still displayed so I called Cuisinart. "Jerome" told me to unplug the coffee maker for an hour to clear the electronics and that should do it. Nope! So, I did it again - still DESCALE was displayed. I called Cuisinart again and "Renush" told me to use the vinegar again and then let it sit for four hours. By this time, it was nearly time for dinner so I did what chores I had to do and we went off to Outback for a nice dinner. I decided, with Jay's approval, to let the coffee maker sit overnight to give it a good chance to work in the morning. We watched a little TV and around eight o'clock he decided he wanted coffee. I drove him to a Starbucks and "they" said they were closed until Friday [????] - that's what Jay said they said! So I drove him to another Starbucks and he got his big coffee. He held it while we watched another TV show. He probably took two sips from the container!
Now it's Sunday morning and at around 6:30 am, he came into my bedroom and when I asked him how he slept / felt, he said he'd been up all night worrying about "the computer." Since he got a new computer about a year ago and hardly uses it, I thought that was his concern. However, it was my dead iMac that was in the garage waiting to be disposed of since I'd gotten a new one in January. So for the first two hours of this morning, I destroyed the iMac by hammering [I'm sure the neighbors enjoyed the racket]. While doing that I was also in the descaling mode for the coffee maker as it still had the DESCALE display. After doing the FOURTH descale process, I called Cuisinart and "Jaylin" told me they would send me a new one, a pre-paid label for the present one, but that it was on back order and might take a couple of weeks. By this time, it's nearly ten o'clock and I hadn't taken my antidepressants nor had I had coffee! I was a frantic mess.
Right now, Jay's off [Sunday morning traffic] disposing of the iMac in a dumpster where he used to work. I've had my coffee and my antidepressants so I'm on the mend mentally!
I wish I could let his "moments" roll off me like water on a duck, but sometimes it's just more than I can bare. Only another caregiver could understand. This is basically a 24/7 job and every once in a while I just snap and then feel just horrible about it. I pray I stay healthy so that I can take care of him. If I "go" first, there's no one. Oh, on that note, Jay needed to have his estate planning documents updated and since mine are about 35 years old, I did as well. Our terrific attorney listened to my concerns about Jay's care both physically and financially if I go first. He came up with a solid resolution and our papers should be ready in a week or so.
Maybe I'll have another cup of coffee --- and a cookie!
The events of the last few weeks have been hard on me and I react and then feel horrible. My sweet neighbor Lana has been dealing with her husband's dementia for nearly nine years. She keeps telling me NOT to feel bad as they don't remember, but I remember and I feel bad.
Jay had a PET scan on Tuesday at noon which is hard on him, but I think it might be harder on me. He can't have ANY carbs for 24 hours prior to the scan and the day of the scan nothing but water for six hours. After the scan, we came home and he made a PB&J sandwich as he wanted to go to Remington's for dinner - their Tuesday Special is his favorite. We got to Remington's and he ordered chowder and the Special. He ate the chowder and when our entrees were served, he took a bite and sat back kind of in a stupor. Joyce, the manager, noticed and knows his illnesses. She came right over and said she'd box up his meal. I asked her to box up mine as well and off we went. The Lemonade was that dinner was ready in the refrigerator for Wednesday.
On Thursday, he decided he wanted corn on the cob with dinner and asked if he could go get some. Since it was midday and the traffic was minimal, I gave him permission. He came back with two ears of corn, one can of baked beans and TWELVE packages of Tate's cookies. By Saturday morning, there were only six packages remaining so I hid them. I'm not denying him his cookies or candy but one he gets a taste, he mindlessly eats away! And we know that sugar feeds cancer!
Friday was chemo day with another two hours of magnesium. He was craving a burger so that was dinner and unbeknownst to me his dessert was a couple of packages of cookies.
Saturday morning I decided to descale our Cuisinart coffee maker and told him to get his coffee fix and it would be a few hours before it would be ready to be used. So, at 10:00 or so, I started the process - not mind-boggling for sure, but time consuming. DESCALE was displayed after the first go round and instructions say to do it again, so I did. After the second go round, DESCALE still displayed so I called Cuisinart. "Jerome" told me to unplug the coffee maker for an hour to clear the electronics and that should do it. Nope! So, I did it again - still DESCALE was displayed. I called Cuisinart again and "Renush" told me to use the vinegar again and then let it sit for four hours. By this time, it was nearly time for dinner so I did what chores I had to do and we went off to Outback for a nice dinner. I decided, with Jay's approval, to let the coffee maker sit overnight to give it a good chance to work in the morning. We watched a little TV and around eight o'clock he decided he wanted coffee. I drove him to a Starbucks and "they" said they were closed until Friday [????] - that's what Jay said they said! So I drove him to another Starbucks and he got his big coffee. He held it while we watched another TV show. He probably took two sips from the container!
Now it's Sunday morning and at around 6:30 am, he came into my bedroom and when I asked him how he slept / felt, he said he'd been up all night worrying about "the computer." Since he got a new computer about a year ago and hardly uses it, I thought that was his concern. However, it was my dead iMac that was in the garage waiting to be disposed of since I'd gotten a new one in January. So for the first two hours of this morning, I destroyed the iMac by hammering [I'm sure the neighbors enjoyed the racket]. While doing that I was also in the descaling mode for the coffee maker as it still had the DESCALE display. After doing the FOURTH descale process, I called Cuisinart and "Jaylin" told me they would send me a new one, a pre-paid label for the present one, but that it was on back order and might take a couple of weeks. By this time, it's nearly ten o'clock and I hadn't taken my antidepressants nor had I had coffee! I was a frantic mess.
Right now, Jay's off [Sunday morning traffic] disposing of the iMac in a dumpster where he used to work. I've had my coffee and my antidepressants so I'm on the mend mentally!
I wish I could let his "moments" roll off me like water on a duck, but sometimes it's just more than I can bare. Only another caregiver could understand. This is basically a 24/7 job and every once in a while I just snap and then feel just horrible about it. I pray I stay healthy so that I can take care of him. If I "go" first, there's no one. Oh, on that note, Jay needed to have his estate planning documents updated and since mine are about 35 years old, I did as well. Our terrific attorney listened to my concerns about Jay's care both physically and financially if I go first. He came up with a solid resolution and our papers should be ready in a week or so.
Maybe I'll have another cup of coffee --- and a cookie!
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