Saturday, August 19, 2023

Saturday, August 19, 2023

Tonight's picture was taken in August of 2008. It was during Mattie's first admission to the in-patient unit. Which in and of itself was an OVERWHELMING experience. Transitioning from your own home and those freedoms to living in a shoe box of a hospital room, with people constantly coming in and out of your room (day and night), not to mention being surrounded by life threatening illnesses and hearing cries and other issues within the surrounding rooms, was a complete nightmare. Which was why the woman in this photo was a God sent. Linda was Mattie's child life specialist. We were introduced to her the first week Mattie started treatment. I am not sure I could have managed without her, and I know Mattie most certainly would not have been able to cope. That day, Linda set up a painting area outside Mattie's room, in the hallway of the pediatric intensive care unit. Mattie took to Linda and she learned right away, Mattie was all about creating and building. This photo captures the beginning of a beautiful friendship!

Quote of the day: I like this place and could willingly waste my time in it. ~ William Shakespeare

My neighbor came over this morning to deliver me another freshly baked pie. I watch my neighbor's house when they go away and the pie was to thank me for collecting sticks, branches, and other debris from their yard while they were gone. I am a pie fan, so I happily work for pie!

This afternoon we took our parents to Chez Francois. I was introduced to this restaurant years ago, by a fellow preschool mom. She took me there for my birthday! I was in love with the setting as soon as I got out of the car! It is just a very magical setting, surrounded by trees and gardens!

When you make a reservation at this restaurant, you are guaranteed an experience. Because it is a four course menu. So literally we were there for four hours. They start you off with an amuse bouche, of lentil soup. 

Then I had a trio of salmon. Ironically I am not a big salmon fan, but smoked salmon is another story. Prior to my pregnancy with Mattie, I loved all kinds of fish. Then while pregnant the smell of fish made me instantly sick. Unfortunately my stomach never recovered post pregnancy and to this day, I can only eat certain fish. 

The restaurant grows many of its own vegetables and herbs. So this was a garden tomato salad. Unfortunately I stopped snapping photos after that, but I also had soft shelled crabs and for dessert, we had a souffle and plum tart with cinnamon ice cream. 

The restaurant has a wonderful garden of zinnias. 

Look at these colors!

A Mattie sighting!

More zinnias. 

How do you like this bee?

Their tomato garden.

The six of us!

Friday, August 18, 2023

Friday, August 18, 2023

Tonight's picture was taken in August of 2008. This was Mattie's first month of chemotherapy. It was Labor Day weekend and Mattie received many visitors. His cousins from Boston and colleagues of Peter's. Our hospital room was the size of a postal stamp and frankly if it was me who was sick, I would want NO ONE visiting me. But Mattie was a child, and I understood the importance of social connections and the need for community support. But I have to say I was operating under very little sleep and intense stress and pressure. Therefore, there were times when making small talk and communicating with others not from the childhood cancer world, was very difficult for me. 

Quote of the day: Cooking and shopping for food brings rhythm and meaning to our lives. ~ Alice Waters.

This morning, Peter discussed taking my mom and his parents on a day trip to Middleburg, VA. Our neighbor has an 100 acre farm in Middleburg, and Peter wanted to show us this tranquil setting and property. 

My dad was at his memory care center, which made such a trip possible. Given that I had not been to Middleburg in years, I quickly jumped on the computer to find out places we could pick up lunch and take it to the farm. My mother in law has to eat at certain times because of her blood sugar levels, so I knew we had to figure out lunch before touring the farm. 

I chose to stop at the Salamander Market. I made this quick determination after perusing the website and menu. When we got to the Market, look at these beautiful mason jars filled with flowers. Flowers were on every table. When we walked into the Market, we were greeted, welcomed, and the person told us the process we needed to follow to order food to go. I knew immediately I was NOT in the city. 

This is our neighbor's house on the farm. It is a glorious stone home, and beautifully decorated and maintained. We ate lunch under the covered porch that you see. 

While sitting on the porch this was our view. Given that you are surrounded by nature, I could see that this could be a relaxing experience. Of course when I have parents in tow, relaxing and calm don't go together for me anymore. 

After lunch we went to the adjacent property where there were stables, a kennel and training ground for American Hounds. Check out this beautiful horse! He was fascinated by us. 

We met the caretakers and trainers of these amazing hounds. Try 100 hounds to be specific. To me each dog looked alike, but get this, the trainers know each dog by name! The dogs loved meeting us. The trainers keep the male and female dogs in separate kennels because none of the dogs are fixed. 

There was a separate kennel for puppies. This fellow was 8 months old and took a liking to Peter. 

After our adventure, I was a bit frazzled. I did not sleep well last night, had a long day in the car, and then came home to cook. I planned a second dinner party tonight with a friend who works in the complex we used to live in, in Washington, DC. I have known Maria since I started graduated school! Needless to say this is a long time. For almost two years now, I have told Maria I wanted to find a time to invite her and her husband to our home. Tonight I finally made that happen, and I am so glad I did! It was great fun and stimulation for our parents. 

 

On tonight's menu was:

• Grilled Shrimp
• Grilled peppers and mushrooms
• Corn and tomato salad
• Green beans with lemon zest
• Tomato, cucumber and mozzarella salad
• A homemade blueberry pie

Thursday, August 17, 2023

Thursday, August 17, 2023

Tonight's picture was taken in August of 2008. Mattie had just begun cancer treatment. That day, he took JJ (our resident Jack Russell Terrier) out for a walk with Peter and JJ's owner. Mattie always wanted a dog, and unfortunately he never experienced the joy of having a dog in the family. Nonetheless, our neighbor visited us often with JJ, so much so, that I always said that Mattie and JJ grew up together. When Mattie died, JJ was a mess. He came down to our front door of our townhouse and sat on our door mat every afternoon. In addition, he went on a hunger strike and also took one of Mattie's sandals and slept with it in his doggie bed. There is something to be said about the bond between a child and a dog. 

Quote of the day: Cooking is a bit like cinema. It’s the emotion that counts. ~ Anne-Sophie Pic

It was a complete juggling act today. I had to go to my endocrinology appointment, while my dad was having physical therapy at home. The endocrinology appointment was fascinating. I decided to tell the doctor all that I am managing at home. The doctor is over ten years older than me, but she revealed that both of her parents had dementia too. However, both were institutionalized. She had NO IDEA how on earth I have been managing this in my own house and doing all the caregiving myself. 

But back to the appointment, I gave it to this doctor regarding her incompetent nurse. The nurse and I have been having arguments over the phone, because she needed to call my health insurer to secure the Prolia shot for me and to get it delivered to the doctor's office. Needless to say, the nurse was dragging her feet and finally I told the nurse on the phone.... DO YOUR JOB! However, because I had no confidence in this nurse, I had Peter intervene, as he knows exactly how to work to the system in order to talk to the correct health insurer people. In any case, CIGNA is indeed covering my medication. 

However, when I went to the office today to get my Prolia shot, NO SHOT was available. The nurse and doctor started in with me again that my insurance will not cover the drug. I told them that isn't correct as I spoke to CIGNA myself. I told them the issue is on their end. I wasn't backing down, and guess who was correct? That is right, ME! I then went on to tell the doctor that her nurse needs an attitude adjustment, as patients are coming to them for help. Patients like me are balancing the healthcare of two other people and I am lucky I am coming to the office at all to manage my own health. Therefore, it would be nice to have someone advocate for me for a change. She heard me loud and clear. 

When I got home from my appointment, this is what I saw! My dad was luggage all day. I would like to say this was due solely to therapy, but I would be wrong. The reality is that I see a massive decline in him this week.

Tonight's table!

On my buffet tonight was:

• Balsamic Chicken
• Ratatouille
• Gourmet Couscous with mint, parsley, cucumber, tomatoes and arugula
• Broccoli with lemon zest

These are our friends Ilona and Attila, they too have lost their only child to cancer. We met in July of 2013, and have been friends ever since. It was Ilona's idea to connect with another couple who lost an only child, and our fellow physician introduced us ten years ago. I am so glad she did. But truthfully it is hard to imagine we have known each other for a decade and that our children have been gone from our lives this long. 

Tomorrow is Ilona's birthday, so we celebrated it this evening. I made a homemade peach cobbler, with peaches from the farmer's market. It was a wonderful recipe. 

Peter's parents visited us last October 2022. When they come into town, I try to do special things. Since we can no longer go touring around, I decided to host two dinners instead. 

Wednesday, August 16, 2023

Wednesday, August 16, 2023

Tonight's picture was taken in August of 2008. This was the month Mattie began chemotherapy. He had already lost his hair at that point. Though none of his limb salvaging surgeries had taken place and therefore Mattie could still walk and run. That weekend, Mattie's cousins visited from Boston. We were in the hospital outdoor garden and Mattie was showing his cousin Will the wonderful rocks in this space. Mattie was fascinated by these rocks and I have to admit to this day, I still have a huge rock that Mattie took from the garden. It serves as my door stop in our pantry. 

Quote of the day: The only real stumbling block is fear of failure. In cooking, you’ve got to have a what-the-hell attitude. ~ Julia Child

Last night was a nightmare. My dad worked himself into a completely agitated and hysterical state. There was no reasoning with him. He also hasn't been sleeping well. I have a nanny camera in his bathroom, which also captures when he gets out of bed. He was up every two hours last night and that also meant my mom was up with him. So they were both luggage today. 

When I went in this morning to get my dad up and showered, he was sleeping on his side. He NEVER sleeps on his side. He told me he did not want to shower or get up and definitely did not want to go to his memory care center. Needless to say, I got him up and the routine going. But I did keep him home with us as he seemed very scared and fearful. 

My mom had physical therapy today and a mammogram. Which meant that I had to take my dad to the hospital with us. While my mom was in her session, my dad was very chatty (highly unusual). What I learned is he is having hallucinations at night. One hallucination was about snow. In fact, he saw colored snow coming from his bedroom ceiling. The other hallucination was that he saw the silk flowers in his bedroom moving and wilting, and the final hallucination he shared with me was that he saw a classmate of his from his memory care center at the foot of his bed, talking to him. Needless to say, after hearing all of this, I text messaged their doctor. I am bringing in a urine sample tomorrow for testing, to rule out a urinary tract infection. Which in older adults can produce an altered state. However, this could be his movement into a later stage of dementia. The doctor will see us on Tuesday, he will evaluate my dad, and we can talk about other medications and next steps. 

When I got home after 4pm, I started cooking and prepping for dinners at home this week. I made a peach cobbler (with peaches from the farmer's market) for Thursday night. 

I pre-assembled a blueberry pie for Friday night. Then marinaded chicken for Thursday and shrimp for Friday. These are not things I can do or focus on once Peter's parents arrive, so I knew I had to get a jump on it. 

On top of everything else I have going on tomorrow, I have my annual visit to the endocrinologist to discuss my bone density issues. My bone scan shows that Prolia is working. What I don't know is whether they are giving me my bi-annual shot tomorrow. Of course any time I get a shot, I always worry about a reaction. Needless to say, this would NOT be a good time to have a reaction!

Tuesday, August 15, 2023

Tuesday, August 15, 2023 -- Mattie died 724 weeks ago today. 

Tonight's picture was taken on August 20, 2009. By that point, Mattie was quite depleted, and within a few weeks, he died. But on that day, we were in the outpatient clinic. Mattie was sitting and creating at the art table with his cancer buddy, Jocelyn. Though these two had many years between them, they related to each other. They understood the horrific journey of osteosarcoma and in fact, I would say that Jocelyn served as not only a friend, but a mentor to Mattie. I will never forget right before Mattie had his first limb salvaging surgery, Jocelyn talked to him about her prosthetic leg. She literally showed it to him and even took it off. He was fascinated and it immediately clicked for him that Jocelyn understood his fears, concerns, and stresses. These two weren't paired together by any of the healthcare teams, they just naturally found each other! It is hard to believe that both Mattie and Jocelyn lost their lives to osteosarcoma. 

Quote of the day: Cooking is love made visible. ~ anonymous

I had a very busy morning and early afternoon of prepping food. Peter's parents are visiting us on Thursday and I know if I don't get a jump on things, there will be NO FOOD. I may not be able to show much now to those I care about, but I do believe that cooking is indeed love made visible. Cooking is an art and a science and it takes time, effort, and energy. It is my hope that Peter's family sees the attention and care that I have put into menu planning. Sure I could have just ordered things out, but I am old fashioned. If people are visiting me, I do like to attempt to cook something. 

Literally from the moment I got up at 6:30am to around 2pm, I was moving non-stop. Then at 2:30pm, I took my parents out for lunch. I drove through a rain storm, but frankly, given the morning I had, it made no difference.  

I made gazpacho, with farmer's market tomatoes and cucumbers. 

I made a tarragon chicken salad, with cranberries. These are just a few of the things I worked on today.

It is 9:30pm and it seems like all hell just broke loose. My dad announced that he was going upstairs at 8:45pm, and started moving on his own. Which was dangerous. He feels he is a burden and basically sees no point in living. Then my mom chimed in that she hates being a burden, and says.... we have to go to a nursing home. Which further sets my dad off. Frankly I feel like everyone is blaming me for their issues and problems and there is SO MUCH one person can handle. 

Monday, August 14, 2023

Monday, August 14, 2023

Tonight's picture was taken on August 9, 2009, four days after we found out that Mattie's cancer was terminal. Mattie requested that Peter put up his big outdoor tent in our living room. I am quite sure under normal circumstances I wouldn't have been keen on this tent taking up our first floor. But it is ironic how cancer turns your priorities around and quickly. Within the tent we put aero-mattresses, and Mattie and I slept in there for a few nights. What you can't see were the multiple IVs attached to Mattie, including a pain pump. Peter apparently snapped this photo of us while we were sleeping and it captured our sheer exhaustion. 

Quote of the day: When you reach the end of your rope, tie a knot in it and hang on. ~ Franklin D. Roosevelt

Despite the chaos of my life, I tried to make my parent's 63rd wedding anniversary special. I started their day out with a bouquet of flowers. Then I took my mom to DC to have her hair and nails done, while my dad was at the memory care center. 

Then I drove back to pick up my dad, and then turned around and drove to Maryland to take them out to eat for their anniversary. Needless to say, I probably drove about four hours today!

Dawn, one of the special servers in our life, got my parents a balloon, card, flowers, and a cake. She made them feel very special. 

The three of us!

Their cake!

The card was charming and it read.... I am never not thinking of you!

Meanwhile, the  battle continues. My dad is constantly scratching his skin. If there is a fly or mosquito around he gets bitten. My dad is rarely outside and typically he has his fleece jacket on (yes even in the summer, as he is always cold) and long pants and socks. Despite that, he gets bitten and with his dementia, he fixates on his bites and scratches constantly. Mind you we bought UV sport sleeves and have them on his arms. That doesn't matter, he scratches right through the material. Tonight he was bleeding and I sent photos to the doctor. When I tell you I am at my wit's end, I am NOT kidding. I have been at it with his skin and scratching for over a month. His left arm is healing, his left foot is a mess and now we have a brand new problem on his right arm!

Sunday, August 13, 2023

Sunday, August 13, 2023

Tonight's picture was taken in August of 2009. Despite the fact that Mattie was in terrible pain and dying, he was still experiencing the typical things kids contend with.... such as losing teeth. As you can see Mattie put his front tooth in his fairy box. I will never forget buying this box with Mattie on one of our trips to Florida. This was back when Mattie was well and I thought we would have many fun moments with this box. This box, along with Mattie's teeth, remain in my nightstand. 

Quote of the day: If you have become upset by something, let this be a prompt to check on whether your expectations are realistic and helpful regarding the situation or others involved. ~ Steve Peter

I would say overall today was an upsetting day. I work very hard at my caregiving role and at the end of the day, no one in my family seems to be happy. I just feel the stress of everyone piled on top of me. Some days I can manage it better than others, and some days, I just want to walk away from all of this and never come back home. As tonight's quote points out.... are my expectations realistic and do these expectations help to explain why I am upset? I don't know and frankly I don't care. I am tired and feel constantly undervalued and under appreciated, and therefore, it doesn't matter if this is a realistic evaluation or simply how I am feeling. At the end of the day, this is my reality. A reality that is hard to describe unless you are living it. 

My dad's skin issues have worn me down to no end this week. He has scratched up his foot and now both arms. Today I put on UV sport sleeves on his arms to prevent him from directly scratching his skin. It is a constant battle managing his needs and there is no point in trying to rationalize with him, because 30 seconds later he has forgotten our conversation. In addition, his dementia makes him fixate on things. Like a bug bite for example, and this fixation causes him to scratch his skin raw. Truly it is upsetting and I can't seem to stop the cycle. Despite spraying him with Deep Woods Off, him wearing longs sleeves, socks, and pants, he gets bitten right through his clothing. If the scratching was the only issue I was dealing with, that would be hard enough. But the irritable bowel syndrome is a nightmare of grand proportion. 

Now my mom is another part of the equation, who needs constant support. The problem with my mom is she refuses to accept that she has a cognitive problem and needs help. In her mind, she functions fine, should be driving, and should be living a different life. I wish she could, and I wish she could care for herself and my dad. But that ship sailed years ago. 

Any case, I am so overwhelmed at the moment, that I am stopping everything I am doing and going for a walk. It is my hope that movement and seeing greenery helps me reset my mood.