Saturday, May 28, 2022

Saturday, May 28, 2022

Tonight's picture was taken in May of 2007. Mattie was five years old and that weekend, we drove to Pennsylvania to take Mattie to Dutch Wonderland. It was a magical trip of firsts for Mattie, as this was his first time on amusement rides, particular rollercoasters. Along our journey, we stopped at the National Toy  Train Museum. Mattie loved seeing all the displays and in one room, they had a tv camera and as you can see it captured both Peter and Mattie together. Naturally I felt the need to capture that as a photo. With Mattie, there were always adventures and he expanded my horizons, as I naturally gravitated to more traditionally girl focused activities. With Mattie, I quickly learned about cars, trucks, planes, trains, building things, and exploring nature. 

Quote of the day: The phrase ‘Love one another’ is so wise. By loving one another, we invest in each other and ourselves. Perhaps someday, when we need someone to care for us, it may not come from the person we expect, but from the person we least expect. It may be our sons or daughter-in-laws, our neighbors, friends, cousins, stepchildren, or stepparents whose love for us has assigned them to the honorable, yet the dangerous position of caregiver. ~ Peggi Speers

I find I am so tired, that if I stop moving, I fall asleep. At 10pm, I headed upstairs last night in hopes of going to rest. However, we brought Sunny upstairs with us, as my thought was he would feel more secure near us. Especially since he received another dose of chemotherapy yesterday. Make a long story short, the change in routine, caused Sunny even more anxiety. By 12:30am, I gave up. I told Peter he had to carry Sunny downstairs, because I couldn't manage hearing Sunny pacing, panting, and non-stop licking of himself. All signs of anxiety. Ironically when Sunny went back downstairs, he did much better. But my goal was to be on hand if he had another uncontrollable bout of diarrhea and vomiting. Thankfully I think we have found an anti-emetic that works for him. I am hoping that is a trend. Nonetheless, we are both noticing that Sunny is losing weight, or at least looks thinner. I frankly am not sure it is weight loss, as much as disease progression. I would like to think that the chemo is doing its job and is decreasing the swelling we have noticed in his mid-drift area. 

Now that it is spring time, Indie is VERY insistent! She wants to go outside. We only allow her onto our porch when we are there to provide supervision. But for a small cat, she can make a racket. She will howl and scream until her outdoor needs are met. 

Apparently our backyard is a bee haven! Can you see all the pollen on this bee's legs? We have planted all sorts of wonderful and colorful plants in the backyard and it is definitely attracting attention. 

This is a pin cushion flower. Once the purple pedals are gone, then the remaining flower really looks like an actual pin cushion. 

Many of the flowers are in line with Mattie Miracle colors. We have some glorious roses, like this one in orange. 

Even the dahlias are happy. 

Friday, May 27, 2022

Friday, May 27, 2022

Tonight's picture was taken in May of 2007. It was Mattie's first day of summer camp at his preschool, and before moving along with our day, I wanted to capture that moment in time. You can see from Mattie's facial expression that he was not happy with my request. But he complied and now looking back I am so happy that I insisted on photos. Not just photos during milestone moments, but photos that documented our daily live together. 

Quote of the day: Sometimes our work as caregivers is not for the faint of heart. But, you will never know what you’re made of until you step into the fire. Step bravely. ~ Deborah A. Beasley

Since my parents have lived with us, we have been spending a great deal of time in about three or four local restaurants. I cook about four days a week, and then the other three we go out for a main meal of the day. My dad actually looks forward to going out. He has to interact with the world, he gets to talk with people, and it provides some structure to his day. Who knew that going out to eat would serve many psychosocial functions? But it does!

In two of the restaurants that we frequent, we have become friendly with the waitresses. They consider us their "regulars." Ironically while chatting with them, we have gotten to know more about them and their families. Don't you know it both in question have been touched by cancer. One waitress, her son is a brain cancer survivor and the other waitress, her husband died from a long cancer battle. She was his caregiver and once he died, she raised four children on her own. These are very determined and special women and what I find most fascinating about this is I think caregivers, or caregiver types, are attracted to one another. 

I personally appreciate working with both of these women, because when I take my dad out, he has a lot of needs and requests. In addition to his pickiness about food, I also have to contend with his bathroom issues. I find that I land up eating quickly at every meal because I just don't know when there will be a bathroom emergency. I used to wonder which bathroom to I take my dad into! But now it is common place for me. I waltz right into the ladies room with him, and to this day, no one has ever looked at me funny or even questioned why I am bringing him in. Of course just watching my dad in motion, it is very evident that he needs a lot of help both physically and cognitively. 

Some days are easier than others to balance his needs. If it was only the physical needs that would be one thing, but it is the cognitive issues that can really weigh on me. The constant questioning, the repeating of answers, and his inability to have interest in anything..... all are overwhelming day in and day out. To help guide my dad's day, I have a master calendar by his chair and a portable white board that highlights all his daily activities and the timing of them. Despite all my efforts, what he really wants to do is sleep the day away, which of course will not help his memory issue. All I can remind myself is to take it one day at a time. But I long for a day when I can just sleep in and not have to jump up and manage ten tasks at once. 

Thursday, May 26, 2022

Thursday, May 26, 2022

Tonight's picture was taken in May of 2007 at Andrews Air Force Base. The Base was having its annual open house air show and it was our first and unfortunately our last time in attendance. Mattie loved all forms of locomotion and we had a feeling he would be intrigued by all the aircraft. In fact, Mattie chose to be an air force pilot for Halloween that year, so we thought he would be fascinated to see a real life base! Mattie got to see the Thunderbirds perform, he got to walk around and go in several of the aircraft on display, and overall it was a very memorable day. 

Quote of the day: No one cares until someone cares; be that one! ~ Ken Poirot

Here's the thing about being a caregiver.... there are NO days off, and forget about making plans. The plan instead really looks the same, day in and day out. I can't wake up and say.... well today I don't feel like doing this! Because if I don't do it, everything in my household will stop functioning. 

Today was one of the many days in my week where I did not leave the house. My dad only goes to the memory care center three times of week. It is only on those days, do I have four hours to get out of the house and do chores. It was a grey weather day and given all I have to do for the Foundation, I did not even get to walk Sunny. I am slowly working through acknowledgments for all Foundation donations. We had over 400 Walk donations, and I am working hard to get this administrative work done. But it is hard when interrupted every two minutes. 

My mom told me that today was Peter Falk's birthday. It turns out that this isn't correct, as his birthday was in September. Nonetheless, my mom was reading reflections on his life through Facebook. I am a big Columbo fan, and based on what my mom was reading on Facebook, I am NOT alone. One fan suggested watching Peter Falk roasting Frank Sinatra in 1978. So I went to YouTube and watched it. If you are a fan, watch it. It will make you laugh. Not because Peter Falk (acting like Columbo) was trying to be funny. But it was his non stop talking and questioning that made this scene hysterical. Gone are the days like this when comedy was funny and it did not require lude and crude language and content. 

Columbo at the Frank Sinatra Roast (about 11 mins long)

I learned that Peter Falk suffered from Alzheimer's too. Given his incredible career and talent, I was very saddened to read this. Along my computer searching today, which I don't have much time to do, but sometimes I need these diversions to make it through my day, I came across this video about Peter Falk's tragic final years. I was surprised to hear about his personal life, but like many of his fans, I admire the actor first and foremost. His 60+ Columbo episodes have brought me much joy over the years. 

Wednesday, May 25, 2022

Wednesday, May 25, 2022

Tonight's picture was taken in May of 2007. Mattie was five years old and as you can see he had climbed into the cart I used for laundry. In our town house in Washington, DC we did not have a washer and dryer in the unit. Instead we had this in a commons space, three floors down (requiring an elevator). How I managed this for 20+ years is interesting, but to me it just became part of the routine. A routine Mattie was familiar with even as a baby. During his baby days, I would carry Mattie, while pushing laundry and soap in this cart. We were a sight, but we were a team. In a way, I think this was an important lesson..... that chores are part one's daily life, and that everyone in the family is responsible to contribute to the routine. 

Quote of the day: Whenever I get fed up with life I love to go wandering in nature. ~ Andrea Arnold

It was another long day. I am feeling chronically exhausted and unfortunately that feeling translates into how I feel and in everything I do. Don't get me wrong, I am still moving, doing chores, cooking, cleaning, and doing Foundation work, but every thing seems to require me to tap into energy resources I just don't have. 

I am posting two photos tonight. One is of Indie. I have had many cats in my life time, but ONLY Indie refuses to drink water from a bowl. She wants it right from the tap. She gets insistent about it too. Indie is a very vocal girl! As a Tortoise Shell cat, this breed is known for their torti-tude! She's got it alright. 

Meanwhile, my boy keeps track of me while I am working. He can stare at me through my office window. The meds seem to be helping Sunny's tummy. Thank goodness, because yesterday was a nightmare and I wanted to say..... the hell with chemo. But Mattie's journey taught me that there are many pre-med options that normally can be given to manage symptoms. So I am hoping that we can figure out the right balance for Sunny. But I am not happy with the way I need to reach Sunny's oncologist. Having to go through his many gatekeepers is exhausting and time consuming. Time and energy are not things I have in abundance. 

Tuesday, May 24, 2022

Tuesday, May 24, 2022 -- Mattie died 660 weeks ago today. 

Tonight's picture was taken in May of 2007. Mattie was five years old and that day he was having a playdate with his best friend from preschool. Mattie and Zachary had a special bond, a bond that formed on the first day of school, and remained the entire two years that they were in preschool. This relationship however, continued into kindergarten, despite the fact that the boys went to different schools. Zachary was an outstanding friend to Mattie throughout his cancer journey, and even though their friendship (pre-cancer) involved a lot of gross motor movement, Zachary accommodated his style to fit Mattie's needs. In this particular photo (pre-cancer), the boys set up a train track from Mattie's bedroom into mine!

Quote of the day: Everyone has a voice inside that, if listened to, gives the best direction. ~ the Dog Cancer Survival Guide

Peter had to travel by plane for work today. So he got up very early. When I got up at 6:30am, I saw Peter had texted me that Sunny got sick last night and he tried cleaning things up, but he had to get ready to catch a flight. I jumped out of bed, made the bed, and then went downstairs immediately to examine the mess. 

In the middle of the night, Sunny did make his way up the stairs. I thought I heard him in my sleep, but since I am exhausted, I did not move. That was my first mistake. Sunny rarely comes upstairs, but he tried to alert us last night that he needed help. 

When I went downstairs this morning it looked like a crime scene in every room.  Not to mention the house smelled terribly. There was vomit and diarrhea everywhere. On floors, rugs, and even spattered on walls. Honestly how I did not get hysterical is beyond me. I am running on vapors! I am extremely tired from my daily routine and this morning's sight practically did me in. I wasn't mad at Sunny at all. I felt terrible for him, as he is a very clean dog. If he did this, it is because he is miserable. Fortunate for the vet, it was too early at that hour to call and scream at him. 

So I put chemo gloves on, as we can't touch Sunny's vomit, urine, and poop, and began cleaning. It took me 90 minutes to do this! Mind you I hadn't planned for this 90 minutes in my morning. Therefore, I was 90 minutes delayed getting showered, dressed, making breakfast and getting my dad up. I felt harried! 

After I dropped my dad off at his memory care center, I called the vet. I left a message and after about an hour, when I did not get a call back. I called again and this time demanded to talk to the clinical staff. We have now added another anti-emetic to Sunny's daily routine, which I am hoping helps with his nausea. We also started him on anti-diarrheal meds. Sunny is listless, doesn't want to eat, and smelled like a nightmare. 

Fortunately Sunny had a grooming appointment today with the mobile groomer. I honestly did not know if Sunny had the energy for this, but the groomer's sister is battling cancer and she had the right energy for Sunny today. I think between the new meds and a bath, Sunny felt better. But this oral chemo is a killer and it is knocking him out. The irony is this med is typically well tolerated in most dogs. Either case, Sunny will not be getting chemo tomorrow as planned, because he needs time to stabilize. 

This evening, this was our boy! Resting underneath the Japanese Maple. I was pleased to see him getting fresh air and he did not appear uncomfortable or in pain. 

But today's experience practically sent me over the deep end. I wanted to say, 'the hell with the chemo.' But I also know if Sunny has cancer, without treatment the sure result is death. 

Monday, May 23, 2022

Monday, May 23, 2022

Tonight's picture was taken in May of 2007. Mattie was five years old and it was Mother's Day. We went to one of his favorite restaurants. Peter snapped a photo of us and as you can see Mattie was crossing his arms. It was meant to signify how much he loved me. A moment in time I will never forget. 

Quote of the day: One's best success comes after their greatest disappointments. ~ Henry Ward Beecher

Last evening, lightning struck down in our area and it somehow affected our electricity. At around 5:30pm, we lost power. Ironically all of our neighbors had power. Thankfully we have a generator, but of course, it can't power the entire house. We went through the night on the generator. This morning the power company came to help us, and it turns out we were getting power from the street to the house. So the problem was in the house itself. Given the luck or lack there of we have had with this house, Peter and I were prepared for a nightmare of a problem. Our electrician came over and thankfully it was a loose wire that had to be adjusted and secured. Amazing how one wire can impact an entire system. By noon, we were off the generator and back on the grid. 

This afternoon, I took my parents to see my eye doctor. Their internist asked that I take them for an eye exam, specifically because my dad has a cataract in both eyes. My parents handled the eye drops and dilation much better than me. My dad particularly liked the doctor because he is Italian. They had a good rapport, and we learned that the doctor's family and my dad's family are both from Calabria. Small world. I found this doctor about a year ago. This is after I gave my long term ophthalmologist his walking papers! This doctor is humorous, down to earth, not an alarmist, and doesn't quickly move to surgery. Especially with someone with my eye issue.... narrow angle glaucoma. 

After the eye appointment, I took my parents out for an early dinner. I am quite sure the average person wouldn't entertain taking my dad out to eat. First of all, he eats VERY VERY fast. This is definitely his dementia. No matter what you tell him, he can't seem to slow down, and instead eating with him feels like a race. The professionals at my dad's memory care center have even acknowledged this issue, as they feel he eats way too fast and is a candidate for choking. I am not sure whether they have ever seen the food get stuck in his throat, like we have, but it isn't pretty. In addition to this issue, we have the bathroom problem. My joke is my dad is like a goose. It goes in and it quickly comes back out. Managing his bathroom needs could be a full time job. A job that would make most people sick to their stomach. All I know is I feel like I am on autopilot, constantly moving from one task or chore to the next. 

Meanwhile, Sunny had his second chemotherapy dosage today. He seems to have handled it better than Friday's dosage! We are premedicating him with all sorts of pills for stomach upset and nausea and I just hope this chemo has an affect on Sunny's tumors. 

Sunday, May 22, 2022

Sunday, May 22, 2022

Tonight's picture was taken in May of 2007. Mattie was five years old and this was a typical sight on our deck when the weather got warmer. Mattie loved playing with his hot wheel cars and that day did his own version of a car wash. All these vehicles got cleaned and were in a line up to dry out. You will notice a pinecone too in the center of the table. Mattie was into collecting pieces of nature and taking them home. We had quite a stick, shell, rock, and pinecone collection at one time. 

Quote of the day: Hope is tomorrow’s veneer over today’s disappointment. ~ Evan Esar

On the weekends, I try to take my mom out and do something for an hour or two. If we don't do this, we are literally stuck at home all week, doing the same routine. It can get both of us down. We have an old school house near us from the 1800s. There is a community group which is trying to preserve this structure. Periodically they do events that help to raise funds. Today's was a community yard sale. This is something I used to do when I lived in Boston many many years ago. So today brought me back to those more simpler of days. 

While at the yard sale, Peter tried calling me because a close family friend was trying to get a hold of us to let us know their child died today. Naturally we have great empathy for this family and though it may be 13 years ago, the death of a child, always reminds me of my own Mattie's death. There was nothing peaceful about Mattie's death. It was gruesome, torture for hours, and the amount of pain meds being infused into him was simply outrageous. His hospital bed and room looked like a war zone. However, Mattie did not want to die. His body was giving out, but his spirit was with us. At the end of six hours of torture, Mattie was given a large dose of propofol, that induced a coma and death. When I am telling you it was horrific, I am not kidding. But Mattie flat lined in my arms at 7:15am on September 8. 

It is now 7:45pm, and lightning and thunder have been intense. So much so that we lost power. Then our generator stopped working. Thankfully we have the cell phone number of our electrician, who helped Peter restart the generator. While this was going on, my dad had to go to the bathroom. But his chair is operated by electricity. So he was in the fully reclined position and I couldn't move the chair down. So in the dark, I somehow got him out of the chair and to the bathroom. Meanwhile, who joined us in the powder room? Sunny! It was a full show with no end in sight.