Saturday, May 21, 2022

Saturday, May 21, 2022

Tonight's picture was taken in June of 2007. Mattie was five years old and that summer we took him to Pennsylvania to experience a theme park called Dutch Wonderland. It was at this park that Mattie went on his first rollercoaster ride. Unlike me, Mattie wanted to try this and turned out LOVING the excitement of the up and down motion. On this he and I differed greatly. 

At the nearby hotel we stayed at, the chef took a liking to Mattie. As Mattie loved his waffles and pancakes in the morning. So one morning, the chef gave Mattie his own hat! As you can see Mattie was beaming over this gift. 

Quote of the day: Depression begins with disappointment. When disappointment festers in our soul, it leads to discouragement. ~ Joyce Meyer

This morning, I took my mom to the Tephra ICA Festival (formerly Northern Virginia Fine Arts Festival). This is an outdoor artisan festival with more than 200 artists, featuring unique, handmade works in the fields of fine art and craft. Though this is the 31st festival, this is the first time I ever attended. Mind you it was 90 degrees outside and intense humidity. After about an hour outside, I had to get my mom to the air conditioner car, as she isn't used to this type of heat. I thought the festival was fantastic! I enjoyed meeting many of the artists, hearing about their craft, and we even purchased a few things. 

https://www.tephraica.org/festival-artists

Since December of 2021, this has been a very familiar sight in my weekly routine. We dined at the Clyde's of Reston every Friday and Saturday. It has been a neighborhood restaurant for 31 years and only because the owner of the building is not renewing this restaurant's lease, that it is closing. Today was the last day the doors of this restaurant will be open. 

For us this restaurant was like walking into an episode of the TV show Cheers. Everyone knew who we were and truly treated us with kindness and as special guests.  

It is hard to believe this iconic place will no longer be around. I am not sure what I will miss the most, but my hunch is the PEOPLE! We know most of the wait staff by name, we know the assistant general manager, and most of the managers. They are aware of my role with my parents and I feel supported while there. Who can say that about a restaurant? Most places are too busy to truly get to know their customers, much less care about their lives. 

But this restaurant has a very special vibe and atmosphere. People genuinely seem happy to be working there and interacting with their customers. Seems to me a lot of this has to do with their outstanding and compassionate assistant GM. Anthony is in a class by himself. 

The restaurant is also auctioning off all of its collectibles. How do you like this life sized statue of Seabiscuit? 

For years this horse was the symbol of W.H. Stombock and Son Saddlery in Georgetown. The shop was located at the corner of Potomac and M Streets, NW, a short distance from the original Clyde's. Every morning the horse was wheeled out to the sidewalk where it became a familiar sight to the locals. When Stombock's closed its doors for good, Clyde's bought the famous horse.

Everything within the restaurant is being auctioned off. You can see what they are featuring, but I am stunned that even tables and chairs are going!

https://bid.alexandriaauctions.com/auction/the-clydes-of-reston-collection-may-25th-2022-310/bidgallery/

We said our good-byes to every one this evening and we know where several of the staff are going. Most likely we will follow them to their new Clyde's locations. But honestly, this place isn't replaceable. 

We have been going to many restaurants over the years, but no one treated us like Anthony. Anthony comped our entire meal tonight as a thank you for our loyalty to his restaurant. What can I say, other than I feel like this is another loss in my life. That may sound ridiculous, but my daily existence is thoroughly crazy, and when I find people who are supportive, understanding, and compassionate, I really am thankful and grateful, and want to be around them. But like everything else in my life, it was too good to be true, and once again, I will just have to adjust. 

Friday, May 20, 2022

Friday, May 20, 2022

Tonight's picture was taken in May of 2006. Mattie was four years old and that weekend we took him to Sesame Street Place. Ironically I did not know that the park had a big water feature to it. So while there, we bought both Peter and Mattie swim suits, and Mattie was eager to experience slides and things with Peter.  This was NOT my thing, so I gladly followed along and took photos. THANKFULLY. 

Quote of the day: We must accept finite disappointment, but never lose infinite hope. ~ Martin Luther King, Jr.

I couldn't fall asleep last night. Typically each night I take migraine medication to help keep my chronic daily migraines at bay. Or at least make the daily pain manageable. However, with all I have going on, I honestly couldn't remember whether I took my meds last night or not. However, when it was close to 1am, and I was still up and couldn't fall asleep, I knew! I then took my meds and fell asleep soon thereafter.

When Mattie was diagnosed with cancer, my sleep patterns changed. I learned, while living in the hospital with Mattie, not to sleep. I was lucky back then if I got two to three hours of sleep a night. How I functioned for over a year like this, I have NO IDEA. However, once Mattie died the anxiety and panic further set in, making sleeping close to impossible. Without sleep, my migraine condition worsens. Which is why I am grateful for migraine meds that both help with headaches and also make me sleepy. In fact, Peter used to be a terrible sleeper prior to Mattie getting cancer. Now he sleeps beautifully, and I am the one with the pervasive issue.

I got up at 6am today so that I could get myself ready, make breakfast, straighten up downstairs, and then get my dad up, showered, and dressed. I was taking my mom to the salon today in Georgetown, and in order to get there by 10am, that required me to perform a miracle. Of course in the  midst of my usual chaos, Sunny began chemotherapy this morning. Within two hours of receiving his dosage, Sunny was a mess. He was highly anxious, glued to my side, panting uncontrollably and he seemed to have issues using his hind legs. I called the vet in a total panic and gave it to them. I made them write a note to their ER department in case I have to bring Sunny in this weekend. 

Fortunately I think some of Sunny's gastro-intestinal meds and nausea meds have kicked in. I hope this is a trend, but honestly I am frazzled with daily tasks, demands, and one crisis after the other. While driving my mom to Georgetown, I have to say I was having a meltdown. I am not a crier, but a screamer. There is so much on my plate on a daily basis, that something has to give. 

Any case, while my mom was having her hair done, I got to get my nails done. I have seen this manicurist since 2009, I was introduced to her when Mattie died. Going out every two weeks to get my nails done, was how I initially began re-integrating back into the world after I lost Mattie. Needless to say, after seeing someone for 13 years, we developed a rapport and friendship. So having two hours away from home, away from my dad's questions, constant demands, his bowel issues, and other problems, was very welcomed. Of course no good deed goes unpunished. Coming home from the salon, I picked my dad up at the memory care center. As soon as we walked into the house, he had an IBS attack and he was covered in poop. I had quite the clean up job to face and I assure you this isn't an isolated problem. It is a problem I face practically daily. 

Thursday, May 19, 2022

Thursday, May 19, 2022

Tonight's picture was taken in May of 2006, Mattie was four years old and that Memorial Day weekend we took him to Sesame Street Place in Pennsylvania. I heard about this theme park from Mattie's preschool. Since Mattie was a huge Elmo fan, we had a feeling he would love it. Anyone who has ever watched Sesame Street, probably recognizes this green door and staircase from the show. At the park they recreated this scene from the show and Mattie posed for a photo. Mind you we bought Mattie ONE Elmo balloon, but a life sized Elmo walked up to Mattie and gave him the second balloon! Needless to say... Mattie was thrilled. 

Quote of the day: When people say they couldn't do what you do, take that as a compliment. They are telling you how very strong and how very special you are. ~ AgingCare.Com

This morning, Sunny went to see the vet bright and early. I am sure he was besides himself as went through most of the day without food. The oncologist called me around 1:30pm. After another urine analysis and an ultrasound, we have no clear cut information. The whole thing is very frustrating. What I did learn was that Sunny's adrenal gland mass has increased in size in less than two weeks. I think we have ruled out cancer in Sunny's spleen and liver. Sunny may have a mass in his spleen, but it doesn't appear to be cancerous. As for the bladder, I believe they think it is a polyp. But again, we can't be certain of this because we haven't taken a tissue sample. 

So why not get a tissue sample of the adrenals, spleen, and bladder? Well it isn't that simple to get such biopsies. In fact, the oncologist told me that getting a sample of the adrenals is actually a complicated surgery that can lead to death. NOT what I wanted to hear, nor do I want to gamble with Sunny's life. So that is OUT OF THE QUESTION. To get a sample of Sunny's bladder mass would require a traumatic catherization. The name of the procedure should give you some indication of the complications, such as rupturing of the bladder. So I had a difficult decision to make today. Mind you I was having this conversation with the oncologist while driving on 495, our Capital Beltway/Highway, to take my parents out to lunch. 

My choice was to do something radical, which would mean removing the spleen, adrenals, and the bladder mass, or do more testing, which has potential negative consequences which I mentioned above, or start oral chemotherapy. Frankly I have a big issue starting chemotherapy when we don't have a definitive diagnosis. But I do not feel like I have a choice, as I refused to elect to put Sunny through such invasive surgeries that could risk his life. Clearly something is growing quickly in his adrenals and something has got to be done before we get metastasis, if we are indeed dealing with cancer. 

Needless to say, when the oncologist and techs talked to me about chemotherapy, they could tell I was NOT a novice. I told them Sunny is taking anti-emetics (anti-nausea) meds daily, we are not waiting to see if he develops such side effects, instead we will prophylactically medicate Sunny in hopes he doesn't get nauseous. Tonight I had to order chemotherapy gloves, because we will need them to administer his oral chemo three times a week, and I can't pick up urine, poop, or vomit without wearing gloves. It brought me back to my time with Mattie. I spent about an hour reading the materials from the vet, trying to make sense out of all his meds, and of course I am already balancing a ton, and don't want to mix anything up regarding Sunny's care plan. When you read about the side effects of this oral chemo, the common ones are diarrhea, anorexia, lethargy, and vomiting. Considering that he appears to be a happy camper now, the whole idea of treating him is hard to wrap my head around. 

On another note, while at lunch today, the manager of the restaurant came over to talk with us. Since we only go to three or four restaurants, these places have gotten to know us well. The manager told my parents that they are lucky to have me. What he did not know is that my parents live with me. He just couldn't get over this. He said I am a living "Jesus Christ." I laughed, but he said he has observed how well I care for my parents and not everyone would do this. I find this absolutely fascinating, how people are observing me! This happened to me whenever I cruised with my parents too. Almost every cruise, people would come up to me mid-cruise to comment on how well I care for my parents. Mind you I did not know these people, nor did I know they were watching! 

Wednesday, May 18, 2022

Wednesday, May 18, 2022

Tonight's picture was taken in May of 2006. Mattie was four years old and he was smiling because it was around that time we transitioned him from a toddler bed into an official twin bed. Mattie was thrilled and he loved the TV show, Bob the Builder. So I got him Bob the Builder bed sheets and the happiness on his face was his approval of the sheets and moving into a big boy bed. The wooden bed frame also has an interesting story. Peter's maternal grandfather made this bed frame for Peter's mother when she was a child. So in essence the frame is a piece of family history. 

Quote of the day: Be aware when distractions come your way. You’ll know it’s a distraction when you stop doing what you’re supposed to be doing and find yourself pondering things that have no value. ~ Beverly R. Imes

I rarely have distractions anymore. Today for about two hours however, my mom and I went to the mall, shopped around, interacted with people and also had frozen yogurt. That may not sound like an enormous thing, but to me it allowed my mind not to focus on work, caregiving, or another chore. 

Of course I only had this distraction after countless tasks were completed. I got my dad, washed, dressed, and had breakfast. I then took him to his memory care center. After dropping him off, I went to the post office and mailed all the Foundation raffle winners their items. While at the post office, I noticed two small children running around and unattended. The post office near me is large inside, and therefore from my perspective one should keep a close eye on one's child. I made a mental note of what I was seeing, but waited in line. After the couple and their children left the post office, all the staff were a flutter. They too were very concerned about the disregard the parents had for their two children. Either these are very trusting individuals or simply down right clueless. Which makes me pause and wonder why people are granted healthy children if they really don't take the time to appreciate and protect them?! It is a rhetorical question, as I was very protective of Mattie, and he still was diagnosed with cancer and died.  

Later this afternoon, I took Sunny for a walk. While walking him a big dog, that I did not recognize, came across the street to greet us. This dog had NO supervision. Though it wasn't my responsibility to make sure this dog was safe, I took it upon myself. I helped the dog cross back over the road and then I tracked down his owner who was inside and clueless. 

Tomorrow, Sunny goes back to the vet for another ultrasound and urine analysis. If the ultrasound isn't helpful, he then undergoes a traumatic catherization. Basically where they use guided imaginary to capture a cell sample in the bladder. It has to be done correct, otherwise I am told Sunny's bladder could rupture. Good GOD! The positive news is that Sunny's spleen and liver pathology results came back with NO Evidence of Disease, meaning no cancer was able to be detected. I will take that news. Now the focus is on the bladder and trying to understand the inflammation there, the mass, and why Sunny is urinating blood.

Tuesday, May 17, 2022

Tuesday, May 17, 2022 -- Mattie died 659 weeks ago today.

Tonight's picture was taken in May of 2006. Mattie was four years old and this photo was taken in his bedroom. At one time, Mattie's room was filled with all sorts of his creations. Drawings, sculptures, and even paintings. Mattie was very prolific in his short life. But I am happy he was because all of these items are part of his legacy. 

Quote of the day: Even nice things don’t make you happy when you’re tired. ~ Jo Brand

I woke up today at 7:15am. It was a LATE start for me, but I was too tired to move. Since my dad did not have to be driven to his memory care center, there was no need in my book to get things moving so early. My dad is really flexible about when he wakes up. It is my mom who wakes up at 5am and therefore I feel pressure to get myself moving. 

In any case, in addition to all my usual caregiving tasks, I wrote to Sunny's oncologist and asked him a ton of questions. I was able to review all his test results (which are inconclusive) and we are taking Sunny back in this Thursday for follow up testing. But so far we have spent $4,000 in testing alone, and we are not any closer to answers. Word to my readers, if you own a dog, please consider pet insurance. I am so glad a friend of mine told me about this when we adopted Sunny. Given all of Sunny's health issues over these six years, this insurance has saved us. 

This afternoon, I took Sunny out for a walk. Last week, while balancing the Foundation's fundraiser, Sunny did not get any walks. But walk time is good for both of us and it also gives me the opportunity to see how Sunny is feeling. Needless to say, Sunny is still urinating blood. I was hoping that the antibiotics and anti-inflammatories he is on would alleviate this situation. Clearly it hasn't! 

Meanwhile along our walk, I heard that infamous SOUND again. It is a scream of a fox. I have to admit when I first heard this sound last year, I thought someone was screaming for help. It is an eerie sound. While holding the leash, and keeping Sunny from chasing after the Fox, I recorded a piece of today's adventure. Listen to the sound. 

I am pleased to say that I boxed all raffle items that need to be mailed to winners. I also electronically sent gifts to all the top walkers with the greatest number of steps. So by the end of this week, the administration associated with the raffle and prizes will be complete. Now I can begin to refocus on acknowledgments of donors and gift in kind donations. 

Monday, May 16, 2022

Monday, May 16, 2022

Tonight's picture was taken in May of 2006. I absolutely love this photo. In a way it was a photo within a photo. When Mattie was a toddler, I took a photo of him by this coffee table. Back then the table was up to his waist. Then at age four, Mattie stood by this same table again and held up the photo of him as a toddler. It showed how much he grew in just a couple of years. Mattie got a kick out of this comparison, which was why I decided to capture that moment in time. 

Quote of the day: The worst thing about being tired is the negative twist of perception. ~ Rosamond Rice

My dad went to his memory care center for four hours today. While he was there, I was once again glued to the computer. Trying to process gifts for raffle winners and walkers with the greatest number of steps. Honestly manning the computer on Walk day is a nightmare, as messages are coming into me, photos are flying by, steps counts are coming in, and I am trying to capture everything to post on Facebook, Twitter, and Instagram. I managed but today the digging out began. As prizes and gifts have to be sent out, raffle acknowledgments to donors have to be done, acknowledgments to donors are still underway, and the list continues. 

Here are our top walkers this year...........

Adult Winners 

• First Place: Chris Dean (23,744 steps)
• Second Place: Leni Perales (19,795 steps)
• Third Place: Ann Henshaw (19,606 steps)

Kid/Teen Winners

• First Place: Alexandra Stuart (15,445 steps)
• Second Place: Kyle Schutt (14,324 steps)
• Third Place: Jeremy Young (13,964 steps)

Our raffle winners this year!

1. Nats: Morgan Kempster
2. Dining: Kitty Goyette 
3. Martha's Vineyard: Meghan Roche
4. Money Tree: Catherine Canterbury
5. iPad: Cheryl Wood 
6. Escape to Wine Country: Kristy Jones 
7. Quilt: Ann Crozat
8. Legos: Michael Reiter
9. Caps: Christine Cooper

We have had a couple of bad storms lately and when this happens my boy lands up in the shower. My shower to be exact. When we moved into the house, Peter and I decided to give my parents the master bedroom and bathroom, as my dad requires a lot of space to maneuver around. So in essence Peter and I are in a room meant for a child. Given that I lived in a townhouse in Washington, DC you would think I would be used to smaller spaces. Ironically our bedroom in the District was bigger than our current space. 

Sunny has issues with stairs, but when it thunders, he finds a way to get himself upstairs and into a shower. The issue of course is he can't get down the stairs. Peter literally carries him down the stairs. I think Sunny was traumatized a month or so ago when we went down the stairs together and I fell and landed on top of him at the base of the stairs. 

After Sunday's storm, we had a rainbow. We took this as a Mattie sign, after his Foundation Walk. I know each year before the Walk we would stress out about weather. I would definitely be tuned into the forecast but no matter what it said, I always felt that the sun would come out. It was just a deal that Mattie and I had with each other. Guess what? Mattie never disappointed. We never got rained out once. 

Mattie Moon over our home last night!

Our regal boy in the backyard! He loves behind outside at night because that is when the foxes and deer are wandering about. Sunny loves anything that moves. 

Our roses are beginning to bloom. We, meaning Peter in this case, has been working very hard outside and his efforts are truly showing. 

Sunday, May 15, 2022

Sunday, May 15, 2022

Tonight's picture was taken in May of 2006. Mattie was four years old and doing what you loved best.... playing outside. It really did not matter what the weather was like, because Mattie was out in it. Mattie loved to take many of his toys outside and incorporated them into his play schemes, including his sandbox and its lid. In this case, Mattie used the lid like a boat. 

Quote of the day: You never get tired unless you stop and take time for it. ~ Bob Hope

Bob Hope's quote has me laughing. Because I certainly don't make time for resting, but I assure you I am tired. Balancing what I do on any given day is a lot and then add the Walk to it. Unfortunately with all I am balancing, I could not fundraise like I was able to in the past. Which explains the fact that we are $15,000 away from our targeted goal. In reality we lost some sponsors this year because their businesses were impacted by COVID. It is my hope that in time they will be able to return to us, but in the mean time that means more leg work trying to find more sponsors. Time and me do not go in the same sentence. 

The Walk is now officially closed for this year. Here are some facts: 

1. So far we have raised over $85,000
2. Sold 745 raffle tickets
3. 15 community and 30 individual walk sponsors 
4. 15 walk teams
5. 200 people registered to walk
6. participation in 40 states
7. 343 individual contributions

We had many wonderful photos sent to us today and despite being a virtual event, there was an energy to it. But it is labor intensive monitoring computer screens all day and though it is different from a live walk, it is still challenging. I have been sitting by the computer all day, when not managing my dad's needs. Tonight I feel strung out, stressed, and very tired. 

With that said, I want to thank all our supporters who walked with us and gave so generously. We appreciate you more than you know.