One Day at a Time

The last item I posted was early last Wednesday, the 21st.  Josefina, our housekeeper, cleans our house on Wednesday. She’s a dear and while I was making her coffee, she asked how Jay was doing and I gave her a brief rundown of the prescription incident.  About three hours into her cleaning, she came to get me and told me she’d found the prescription in the garage BEHIND her supplies carrier. Jay had evidently gotten out of the car and just tossed the white paper bag holding his prescription but totally forgot he’d done so.  

Lesson still learned - do not trust Jay with prescription retrieval.

On Friday morning I had a doctor’s appointment for ME!!!  Dr. H is a dear and after explaining Jay’s road bump, she stressed that he can’t be trusted and that when it comes to prescriptions, I should be the ONLY ONE getting them. Point taken!

Right after my appointment, Jay had his labs and chemo downstairs at Texas Oncology. We found out early on that Dr. F had ordered magnesium for every chemo infusion.  On Friday, it was an extra three hours, making it a total of over four hours.

He truly is my hero as he rarely complains.

Dinner at Pappadeaux was not wonderful as our waiter was never trained - or so it seemed. Might be a while before we go back there.

On Saturday, we picked up my new car and is it ever a beauty! Jay was very patient while Jim Francis went over all the fun stuff.

On Sunday, Steve came for dinner.  WOWed all over my car and it’s nifty features.

Also, Steve said Jay looked better than he had in a long time, and was walking much better.

That sure was good to hear.

So, now it’s Tuesday, the 27th and DirecTV is going to be installed today.  I’m fretting and worrying that it’s not going to go smoothly.  Oh, well!!

Road Bump

For many days, Jay's confusion comes and goes. Last week was rough as his magnesium level was low. He had labs on Wednesday with a two hour infusion. Dr. F. wanted to check him again on Thursday and magnesium was ok. On Friday, he had a labs, Dr. F and chemo. Dr. F  is very caring and took great pains to alleviate his worries about his pending death. She also said that the Erbitux can very likely cause confusion. Eased my mind a bit and did wonders for Jay.  She wants to see how this stuff is working so he'll have a PET scan on March 12th.  Off to chemo.  Since they give him a nice does of Benadryl he sleeps through it and it typically takes around an hour. Labs came back and magnesium was low so another two hours with getting that back up.  Dr. F prescribed magnesium oxide [prescription strength] as the OTC didn't seem to be working.

The rest of the weekend was pretty good - he even remembered my birthday was Sunday but forgot to buy me a card.  That was totally fine as we've ordered me a new car!

On Monday, he seemed to be in pretty good shape so I told him I was going to go pick up his prescription and then head to the Mall for some much needed retail therapy.  He said since Walmart is so close, he'd get the prescription. I typically don't like him to drive but he really wanted to and sometimes it gives him a much-needed sense of worth, so I told him he could. I asked him to pick up a loaf of bread and peanut butter [his fall back sandwich].
  
When I got home [after about 2 hours] his garage door was open. I went into the house and began unloading groceries from my car. He came into the kitchen and said he was whipped. I asked if he'd gotten the bread and he said he did. Since it wasn't where it was normally kept, I asked him where he put it - he said he didn't remember.  I saw no peanut butter either so I asked if he'd gotten the prescription - he said he did.  Since I take care of all his meds, I asked him to please bring it to me. After about 10 minutes he came back into the kitchen and said he couldn't find it. I looked in the back of the car and there was the bread but nothing else. We started searching his office - no luck.  We tore his office apart - no luck. I then thought he might have laid the items on his bed [why not] and what to my wondering eyes should appear hidden at the side of his bed!!!  THREE boxes of chocolate malt balls in the half gallon size, a HUGE Hershey's chocolate, a box of cookies and a box of palmiers, but no prescription.  On the other side of his bed, and found a bag with a jar of Jif and ONE can of soup - no prescriptions.  We spent the next nearly two hours searching and re-searching. I even called Walmart to make sure he'd picked it up - he had. I then called Stran, Dr. F's nurse, and left a message telling her our dilemma. He said he REMEMBERS it was in a white cloth bag [?] and he REMEMBERS putting it under my bed [why wouldn't he] but it wasn't there. In a little while Stran called back and said she'd resubmitted the prescription and in a very short time, we got the Walmart call letting us know it was ready.  All this happened prior to me having taken my Zoloft so stress level was VERY high.

Lesson learned: Jay just can't be trusted!

I SO deserve that new car!!!

Another Day - Another Day - Another Day!

Wednesday, was pretty good - for the most part. His appetite was nearly non-existent but I was able to force a few pieces of shrimp into him. A few TV / remote "moments" but they were easily fixed.

He had chemo on Thursday and then late on Thursday, I got a call from Dr. F's nurse saying that Dr. F didn't like his magnesium level and he was scheduled for a three hour magnesium on Friday. He was good with it and did well.

It's now Tuesday, nearly a week later, and I see SO much degeneration of his memory. He's convinced that there are two Dallases - this one and an old one. This has been going on for quite some time but the last week has been very disheartening. He's been going to bed around 8:30 p.m. and asks for a "cuddle" before I go to my end of the house. So I lay down next to him for a few minutes and he seems calmer.

Last night, I woke up around 1:30 a.m. worrying about him and unable to fall back to sleep. Also, there were a lot of sneezes, so I took a Benadryl around 3:00 a.m. and picked up my iPad.  In a few minutes, he was walking into my room telling me he just needed to talk for a few minutes.  We did - I tried to explain we're in Dallas and this is our home. He was again calmer and went back to bed.

Now, it's around 10:00 a.m. and I just spent the last hour trying to get him to explain to me HIS REALITY. He's convinced not only do two Dallases exist, but two homes. He wanted to ask me to pack a few things - not too much - and drive back to his house in the Other Dallas. He struggles to find words and goes off track. The entire time I was sitting in the chair in his home office, I was praying for God's help with this.

We see Dr. F on Friday and I'm going to ask her if the Erbitux is doing this to his memory.  Also, we see Dr. H on the 19th and I'll discuss this with her as well.  Last summer, Dr. H asked if we wanted her to prescribe Aricept for his memory issues and quickly added that it wouldn't work. All the research I've been doing confirms that NO drug from Big Pharma does anything at all to help with memory issues - just makes Big Pharma richer and bigger.

On March 1, Awakening from Alzheimer's is having another 12 day series of new interviews and I'll be watching every minute. I truly believe there are good doctors out there who want to put an end to this horrific disease.

What's Worse? Cancer or Dementia?!?!

Good question, eh?  I wish I had the answer.

I heard on the news yesterday that a vaccine had been "discovered" that cured cancer in lab rats at Stanford. I would LOVE to get Jay into a study on humans to see how successful it could be.

I know studies have been made that found a great deal of hope as far as dementia is concerned. I just wish I could Jay to get on board with giving up sugar and eating a cleaner menu, but I think that's a lost cause.

It's Wednesday, and so far, this week hasn't been too bad.  He had a "moment" yesterday when he totally forgot how to make coffee.  We have a Cuisinart that uses K-cups and we've had it or a Keurig for years and years. He was totally lost yesterday but after I showed him how to do it, he was able to retain that information.

We went to his favorite restaurant yesterday and except for being very slow in ordering his meal, all went well.

This morning, while watching his hero, Dan Patrick - the sports guy, not the Lt. Gov. of Texas - he pushed "something" on the new remote and had no sound and the TV "looked off."  I was able to push PLAY and all's well.  This may seem very minor, but this is a man who used to fly airplanes and after that, was an ACE in the audio/video environment.  It just hurts my heart when he gets frustrated with himself for his "brain leaks."

How to Deal with Cognitive Impairment / Dementia

Naturally, some days are better than others. For the most part, Jay doesn't seem to stress about his cancer. His major concerns are: how did the cars get here? Where are you going to sleep tonight? We've stayed here before haven't we? These are questions that he asks nearly every evening. Some times, it just takes a few words to get him straight, but on other occasions, it's really difficult to get him to accept reality.

We got married on May 10, 2017 in Palm Springs, California after over 31 years of being together. When he's asked when we got married, he always says Wednesday - which is correct. However, he never gets the month, date or year correct.  I'm thrilled that he remembers Wednesday.

When he worked for Stereo East, he was a crackerjack with audio video and had the best equipment and knew how to use it blindfolded. Now, he can't manage to turn on or off the TV. While I've typed these three short paragraphs, he's come into my sitting room to ask me how to turn on or off the TV TWO times! We're now on the third remote control in three months as he thinks another will be better. A lovely young man from Spectrum, our provider, came out on Saturday as we'd been told over the phone that it was the cable box that needed to be replaced. He discovered the cable box was just fine but that the remote control was obsolete. Now he's having to learn to use yet another remote!

Sometimes I get so frustrated but try SO very hard not to show it as I just don't want to cause him stress or anxiety. It's so painful to see him struggle with things that a normal person doesn't even think about.  I don't know how to deal with these issues but am doing the best I can.

His appetite has always been poor but now, it's ridiculous. Candy, cookies, sugar on Cheerios! Sugar feeds cancer and he knows that but it's an addiction. And really, at this stage in his life, should I really try to monitor everything he puts in his mouth? I don't think I mentioned it, but he's 77 years old.

There was a web series in November/December of 2017 called Awakening from Alzheimers which I diligently watched. There were 12 or 13 episodes interviewing Dr. Mary Newport, Dr. Dale Bredesen, Dr. David Perlmutter and others diligently working in the field. There are several supplements that were recommended.  He'd been taking NeuroMag for over two years and I think it's made some improvement. After he'd taken it for a month or two, I stopped giving it to him and within a week, I could see the difference. He's back on it and also takes Lion's Mane as well. Those are the two main supplements that he takes.  I was giving him MCT tablets but after a few weeks, I stopped as his appetite didn't need to be suppressed anymore than it already was. I put MCT oil in my first cup [only cup these days] of coffee each morning and if I have tea, it goes in there as well.

I don't think there's much of a flow to this post but it's late and I'm tired and I might tweak it tomorrow.  But the Eagles won the Super Bowl and I'm happy.  Jay has a man crush on Tom Brady so he's not too thrilled.

Our History in a Nutshell

We met, Jay and I, lo! those many years ago. We've had our UPS and we've had our DOWNS but through it all, we've had each other. We're not unlike many couples - we both worked outside the home. We took wonderful vacations together. Before too long, we found ourselves in retirement and were happy to get to that part of our lives with few HAVE TOS to deal with.  Remember the old adage, God just laughs when you make plans.  We'd made plans but God had other plans.

As a little bit of history, Jay had stomach cancer in the early '80s - before I met him.  We met in 1986 and I moved from Fort Worth to Dallas into his very own house in 1989. We had a very good life! I had a job I liked and, Jay worked at Stereo East a few days a week.  He'd been medically retired from Delta Airlines after his first bout with cancer and this part-time job was a Godsend. It gave him the opportunity to use his brain by learning new things, and to socialize - not just with his co-workers, but with customers and vendors.

In the Spring/Summer of 2007, my Mother got sick and passed away. I was fortunate enough to be able to fly off to New Jersey and spend time with Mom before she passed, and to stay for several weeks after Mom passed, to help my sister, Vicki, with getting things in order.  I was away from Jay for nearly two months and when I got home, I noticed he sounded hoarse.  That was in August, in September he was diagnosed with laryngeal cancer, and on Halloween, he had successful surgery to remove the tumor. All good, thankfully.

All those wonderful vacations we took together, were to Carmel, California.  Now, we're in the summer of 2013. Jay's dad will celebrate his 100th birthday in August. Of course, August is when we typically go to Carmel.  We just couldn't go this year as we HAD to go to Iowa to celebrate The Birthday with the Shaff Family.

In early July, I had to take Jay to the ER as he was acting erratic and making no sense.  They found that his sodium level was very low, so after two days in the hospital, we were sent back home, making plans to go to Iowa. Jay, of course, internalizes EVERYthing and since Carmel is his dream, he's making himself sick because we can't go this year due to The Dad's 100th birthday; hence the short hospitalization.

In Iowa, Diane, Jay's sister, and a few other folks, put together a beautiful celebration of The 100th Birthday.  The party was short and sweet and since the next day was Jay's birthday, we wanted to get back to Dallas as quickly as possible.  We left Bettendorf and in less than an hour, Jay's head was bobbing and he appeared to be falling asleep WHILE DRIVING!  I drove the remainder of the trip and we got home safe and sound!

The Dad passed away in November of 2014, exactly five months after Diane suddenly passed away. After spending a week getting The Dad's house ready to sell, the funeral/memorial service, we were pretty tired. However, we wanted to get back to Dallas, so we left Bettendorf early and before we got to Des Moines, Jay was nodding at the wheel. Again, I took over and got us home safely.

In February, 2015, I had to call 9-1-1 as Jay was incoherent and his blood pressure was HIGH! He was admitted with the diagnosis of low sodium again.  After three days, he was sent home.  July of 2015, another trip to the ER with low sodium diagnosis but no overnight stay.

In September, 2015, another trip to the ER and another diagnosis of low sodium.  This trip, the Hospitalist, Dr. S., used his brain and noticed Jay's had had several trips to the ER and vowed to find out WHY!!

After 12 days in the hospital and a myriad of tests, he was diagnosed with Moderate Cognitive Impairment [MCI].  Since he had a history of cancer, he'd been seeing Dr. F. who tested him three or four times a year. After the hospitalization, he spent nearly three weeks in rehab, was given a walker, and prescribed six more weeks of out-patient physical therapy.  Of course, Jay used his walker two or three times as it's just not manly to do so.

One of the physical therapists told us that a fall was any "unexpected descent to a lower elevation" and believe me, he had a lot of those. Once while walking around the block, he went down on his knees. A neighbor who was mowing his front yard elected to ignore us but thankfully, a worker in another neighbor's yard came to our aid.

Dr. F., the oncologist, ordered a PET scan and found a "spot" in his mediastinum which could be cancer or could be a glob of mucous. So, off to Dr. J., a cardio-thoracic surgeon, for a biopsy. Yep, it was cancer.  So, in May and June of 2016, Jay had radiation five days a week for six weeks.  PET scan in August showed a little "spot" but it was slow growing so not to worry - just "wait watchfully."

In the meantime, his MCI was being held at bay by NeuroMag and other supplements recommended by a friend who is a nutritionist and in whom I have a great deal of trust.

Since we were waiting watchfully, we took a trip to New Jersey and Vermont to visit family and friends.  Of course, due to the MCI, he's been told not to drive so I did all the driving. Tiring but really and truly, I didn't mind the driving part at all. The lugging of the suitcases in and out of hotels was another story.

Due to all the hospital visits and doctors' visits, we decided in May of 2017 to hop in the car and head to Palm Springs, California to get married.  "After over 31 years of living together, we decided to take the plunge and get married" was my Facebook announcement. Folks were stunned but it was much easier to be married and maneuver hospitals and doctors.  Fun trip and yes, I did all the driving. But the ring Jay gave me more than made up for it!

Jay was having PET scans every three months to keep an eye on the growth.  In July of 2017, Dr. J. removed a cancerous lymph node and all the other nodes in the mediastinum.  We felt as if he'd gotten it all.  However, the September PET scan showed another growth.  Off to Dr. A., for another surgical biopsy in November.  Dr. A. was very forthcoming with me and after using the word HOSPICE several times, he got my attention. It appears Jay has metastatic cancer for which their is no cure - no source - if one tumor is removed, another will raise its ugly head in another part of his body in the matter of just a few weeks.  Dr. F. told us NOT to be be unduly worried as it's slow growing and she assured us she would give us fair warning before hospice needs to be called in.

Dr. H., our primary, has been seeing Jay every three months to keep an eye on his MCI.  Now, because of the stress, she sees me every three months as well.  She told me that writing a blog would help not only me, but could very well help other folks in this situation.

Jay's now being infused with Erbitux once a week - for the rest of his life.  Sometimes the MCI seems like a blessing as he doesn't seem to stress about the cancer, but other times, he is very childlike in his rantings.  I often call him My Toddler and when I told this to Dr. H., she said it was true but that he just wouldn't get "older" due to the MCI.

So, that's some history.  I'm going to try to use this platform as a way to vent so as not to burden family and friends with my everyday issues.  If anyone finds any of this helpful so far or in future postings, please don't hesitate to ask questions. Or give advice.

Thanks for your shoulder! More to come.