Saturday, July 29, 2023

Saturday, July 29, 2023

Tonight's picture was taken in July of 2009. We were home and that day Mattie was celebrating my birthday. His child life specialist got Mattie this cake, so he could give it to me. This was my last birthday with Mattie. At that point in time, we thought Mattie's cancer treatment was over, and we could begin working on rehabilitation. That said, on some level I think we knew that Mattie was quite as he was eating and drinking practically nothing. His doctor kept telling me that Mattie was manipulating me either for pain medication, or controlling his intake of food. I did not buy any of it! Unfortunately I was correct. 

Quote of the day: You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, I lived through this horror. I can take the next thing that comes along. ~ Eleanor Roosevelt

It was another full day here, with many emotional highs and lows. On top of everything else, I took my parents out to an early dinner. While at the restaurant it was the usual routine of my dad being head down and not making conversation and my mom rattling on about the same things. At the end of the meal, my mom let me know once again that she should have never moved from Los Angeles. She isn't happy. I am sure she isn't happy because she left the familiar behind and she sees herself as fully functioning. Honestly she is stuck back in 2018, pre-COVID, and hasn't accepted that a lot has happened to my dad and her since that point. They can no longer live independently. Certainly I wish they could, or at least it would be nice if one of them was independent and could help the other. But that is not the scenario or the reality I am facing. Nonetheless, after giving up my life for almost two years now, it is hard to keep hearing the same mantra. It wears on me and it's in these moment, I want to pack my bags and let everyone figure it all out without me for a day. Certainly anyone can be trained to deal with the physical tasks I do each day, though I do work for about three people, it is the emotional stuff and meltdowns I deal with that make my role extremely challenging and not just anyone can step into my shoes. Any case, it is still light outside, and I am going outside to regroup in the garden. 

Friday, July 28, 2023

Friday, July 28, 2023

Tonight's picture was taken in July of 2009. That day Mattie received this gift. It was a wooden figure of Sponge Bob. Prior to Mattie's diagnosis, we did not watch Sponge Bob on TV. However, while he was in clinic, he saw other kids watching it, and because I disliked it, that caused Mattie to like it even more. In any case, that day, Mattie was giving me his Sponge Bob impression, and naturally I caught it on camera!

Quote of the day: He who conquers others is strong; He who conquers himself is mighty. ~ Lao Tzu

After my usual slew of chores and tasks this morning, I got my mom into the car and we headed into the city. I decided to get a conditioning treatment for my hair as well as a haircut. I was scheduled to have this done at 11am and my mom was going to get a massage at 12:30pm. I tried to schedule these appointments at the same time, but that wasn't possible. I explained how the appointments were going to work numerous times to my mom. I brought dry cereal, popcorn, and things to keep her busy while I was getting my hair done. 

Within ten minutes of my hair appointment, my mom started acting up. Unfortunately the salon put my mom right next to me. They probably thought this would allow us to talk together. BAD IDEA! For almost two years now I haven't taken care of my own needs and my hair is definitely suffering. Therefore, I was hoping that being at the salon today would be pleasant, a good diversion, and I could focus on myself. Forget it. My mom started making noises, holding her head in her hands, and telling everyone she was bored. How I did not crown her over the head or start screaming, I have no idea. 

At 12:30pm, when her appointment started, I spoke to the salon owner and my hairdresser. I explained that I can NO LONGER have any appointments where my mom is unoccupied. So if that means we schedule her for another service, that is what we are doing! They got it immediately. I swear it is like dealing with an obstreperous child. 

Tonight's quote is spot on! There is a lot around me right now that I don't like and I can't control. I literally could scream my head off, but who's going to listen and what would that accomplish? My hairdresser today sat down with me and she basically said.... what you are doing most adult children couldn't and wouldn't do. She admires what I am doing and she got to observe one of my mom's melt downs for herself! It is understandable why I say that caregiving is not for the meek. 

Thursday, July 27, 2023

Thursday, July 27, 2023

Tonight's picture was taken in July of 2009. Mattie was in the clinic that day, sitting at the art table with his buddy Brandon. It was Brandon's birthday and despite being in a hospital, it was a very festive occasion. In fact, it was on that day that Mattie created Dr. Crazy Hair. This doctor even had a sea shell in his pocket, that Mattie said resembled a toenail! For the longest time this statue of Dr. Crazy Hair was in our living room on display. 

Quote of the day: I learned there are troubles of more than one kind. Some come from ahead, others come from behind. But I’ve bought a big bat. I’m all ready, you see. Now my troubles are going to have trouble with me. ~ Dr. Seuss

I took my dad to see the podiatrist today. We see him every 90 days. Given my dad's history with diabetes, it is important to manage his foot care. My dad has very sensitive feet and I wouldn't attempt to cut his toe nails. Which is why I am thankful that Medicare covers these visits. In fact, I cut my dad's finger nails every two weeks, and all I can say is WOW! You would think I was killing him when I do this, but despite his fuss, it just has to be done. I plow through all his moaning sounds. 

This spring my dad's podiatrist retired, so we transferred over to his colleague today. I find it fascinating when a doctor interacts with an older adult. Frankly before moving onto an examination, I think it would behoove the doctor to find out a little more about the patient in front of them. Or how about introduce themselves to me! He never even asked who I was until the end of the visit. Of course, I was speaking up throughout the appointment, otherwise it would have been a one way dialogue. I am quite certain that even after this appointment was over, the doctor didn't quite register the fact that my dad can't live independently and that he has dementia. So truly talking to my dad about his foot care is hysterical. I know that a few minutes after leaving the office, my dad won't remember the doctor or the appointment. Case in point, my dad doesn't remember the podiatrist who just retired and he has been seeing that doctor for over a year, every 90 days!

After the doctor appointment, I ran some chores with my parents in tow, and then took them out to lunch. Every Thursday, we go to Mattie's favorite restaurant. I know many of the servers and management at this location. In any case, when we arrived today one of the managers told me that I must be an angel because he has never seen a child care for both parents like I do! He was smart enough to deduce that I have NO OTHER life than what I do for them daily. I of course tell him I am only human and have my good days and bad, but I am always amazed what people notice and observe. 

Wednesday, July 26, 2023

Wednesday, July 26, 2023

Tonight's picture was taken in July of 2009. This was about a month before we knew that Mattie's cancer had metastasized. At that point in time, we thought that we could begin focusing on the physical rehabilitation of Mattie. Our goal was to get him strong, more independent, so he could transition back to school in September. That was the hope. As you can see, Mattie's hair had begun to grow back. That day, Mattie wanted to help us paint the deck of our townhouse. This was an annual spring occurrence and Mattie was always part of the process. What you may not be able to tell was that Mattie used his feet to paint and at one point even held the paint brush between his toes. With his cancer treatment, his left leg and foot were the only limb unaffected by cancer. Which was why he left used that foot and leg like a hand and arm.

Quote of the day: There is no grief like the grief that does not speak. ~ Henry Wadsworth Longfellow

It was another long day here. I spent a good portion of the day at the hospital. My mom had her physical therapy appointment and after that, I had a bone scan and mammogram. The hospital that we go to has a brand new outpatient pavilion. One would think that something BRAND NEW would be great. We have been watching the creation of this pavilion over the last two years. I admit I do not like change for the most part, but NOT all changes are good. This pavilion is indeed one of those NOT so good changes. I am not sure what interior designer worked on this project, but it is very evident to me that patients and clinicians were not consulted. A big mistake. 

The new building is sterile looking. Austere! A hospital is a hard enough place to spend time in, but the colors, space, and use of light are crucial and do impact mood. All the walls and almost all the floors seem bright white. It is hard on the eyes and at times I picture in my head the old photos of insane asylums. This is what the space evokes in me. I can't wait what happens with more use, as those bright white spaces will show every scratch and piece of dirt. 

In addition to the whiteness, the hospital has moved to electronic check ins. I absolutely HATE interfacing with a machine when it comes to my healthcare. Yes I am old fashioned, I prefer talking with people. How this new mode of check ins will work with older adults is beyond me. Any case after my mom's therapy appointment, I drove her back to the main hospital building, so she could sit in the atrium, listen to live piano music and have the snack I packed her. Meanwhile, I walked back to the new pavilion and dealt with the women's imaging department. 

When I spoke to the scheduler weeks ago, she refused to schedule a breast ultrasound for me, like my doctor ordered. She said that the only way I could get a mammogram and ultrasound is if the radiologist reviewing my mammogram feels an ultrasound is necessary. I told the scheduler I wasn't happy with her interpretation of the situation. Any case, after my mammogram today, I asked to speak to the manager of the women's imagining department. After a conversation with her, I am getting an ultrasound and just have to get my physician to write the order in a different way. Now why the scheduler couldn't have relayed that information to me, I have no idea. I do not have a breast issue going on, but given my history, my physician wants to be proactive with me. Of course I can never get over the antidotal information a cancer mom once shared with me. Her son had osteosarcoma too and she said there is research about a high incidence of sons with osteo and their moms developing breast cancer. So far no doctor has confirmed this with me. 

After my appointments were over, I walked back to the main hospital and picked up my mom. While there, we got to talking with a hospital employee who encouraged me to reach out to the hospital executive leadership team about my feelings and reflections on the new pavilion. So I walked into the leadership office and spoke to an administrative assistant at the front deck. She was a total nightmare and should NOT be working with people. She basically wanted to dismiss me and said I couldn't speak to anyone, I could only interface with the leadership in writing. Mind you she gave me no information on how to do that, so I demanded that too. Needless to say, my original letter was going to solely be on the new pavilion. Now it will be on the new pavilion and this nightmare of a person I had the displeasure of interacting with today. I can only imagine how many family members she has scared out of that office. Totally unacceptable. 

Tuesday, July 25, 2023

Tuesday, July 25, 2023 -- Mattie died 721 weeks ago today.

Tonight's picture was taken in July of 2009, on my birthday to be specific. That day Mattie constructed this lighthouse card for me with my in-laws. This card was reminiscent of all the lighthouses we toured together in North Carolina. By this point, you can see how emaciated Mattie was, as his legs looked more like toothpicks than human legs. You can also see the chaos all around us in the living room, as things piled up all around us and I just couldn't address it. My priority was Mattie. 

Quote of the day: There are two great days in a person's life — the day we are born and the day we discover why. ~ William Barclay.

This William Barclay quote is very poignant, especially as I reflect on yet another birthday. Since I tie my birthday to Mattie's diagnosis, it is sometimes hard to see the forest through the trees. But if I had to address the latter part of Barclay's quote, I think the conclusion to why I was born, is very tied into the creation of Mattie. It was from having Mattie and sharing his journey as his mom, that I truly figured out what things in life are important, what I value, and how I wish to live my life. Perhaps I was born to call attention to the psychosocial issues associated with childhood cancer and try my best to address them. The verdict is still out, but that is what I am sticking with on this year's birthday.  

I would have to say that I had a wonderful birthday. Not because of what I did, but because of the incredible people within my life. They have made a challenging existence much more bearable today. I started my day with a phone call from Peter's parents. They sang me happy birthday and you know what, they still can harmonize beautifully with each other!

Then I had some very meaningful text message exchanges with Tricia, Mattie's favorite HEM/ONC nurse. Tricia has seen Peter and me under the worst of circumstances and she was with us every step of the way. Even on the day Mattie died, and has been supporting Peter and me over the last 14 years without Mattie. Tricia is not only a professional caregiver, she is a caregiver to so many in her family. As caregivers we speak the same language, we get the feelings, the thoughts, the guilt, and incredible feeling of exhaustion. Not to mention the loss of one's identity, as we absorb the care and pain of others. In any case, some how dialoguing back and forth with someone who gets me and gets the situation perked me up. As neither one of us would be happy having others caring for those we love. This is hard to explain, but I have to say it was a real gift to feel understood and valued. It is no surprise why Mattie told Tricia he loved her. 

I also received gifts in thoughts and writing. My friend and colleague, Lisa, who I have known for a long time (as we went to graduate school together), wrote me a heartfelt message. Receiving such feedback from a gifted educator and researcher, made me feel so special. Here is an excerpt from what Lisa wrote to me (Thank you Lisa!):

What you have done with the blog is unfathomable. Amazing. Storytelling. Educating. Humanizing.

I think I know you a little bit and one thing I think I know is that you do NOT need recommendations and suggestions from other people. You are smart, wise, knowledgeable, resourceful, bossy in and EXCELLENT way, warm, kind, a good listener, best mom ever, successful business woman, teacher, detective, and many other magnificent things.

Meanwhile, Peter showered me with flowers (he knows I love lilies too), a shell shaped dish (as a reminder of all our beach trips together), and beautiful sentiments which I will cherish in a birthday card.

Peter knows I have stopped counting. Which is why he wished me a happy 29th birthday today!

My friend Tanja sent me this photo today of a quilted fabric that her mom created in Germany. Unfortunately her mom recently died from cancer, but what touched me deeply is that Tanja wishes to share this handcrafted piece with me. Tanja knows how much I love sunflowers and how symbolic it is to me, as sunflowers represent Team Mattie. I am honored to have this piece created by her mom, Elizabeth. 

My friend Tina came to the house today to visit. Given that I moved into the house, did a lot of work on the house, and then moved my parents in, I haven't had most of my friends to our new home. You know how people have house warming parties, NOT us. I am too inundated with  caregiving to live a normal life. However, there are many things that Tina said to me today, that ring true and I know Peter has been trying to tell me the same thing. Specifically that my current trajectory is not sustainable. I am absorbing this message and I am honored that I have people in my life who care about my well-being. 

Tina, my mom, and me. 

Tina brought me several gifts today. The body wash and lotion caught my attention right away as they are from the Sanderling Inn in North Carolina. The Sanderling is a place Peter and I used to visit yearly. In fact, it was at that Inn that I realized I was pregnant with Mattie. So as soon as I saw these products today, I was immediately transported back in time. 

We went out for an early dinner today. Our fabulous server, Cheryl, surprised me with balloons, a decorated table, and lots of gifts!

This is Cheryl. 

All four of us. We just couldn't get my dad to stop chewing on a crouton!

A selfie of us!

I am thankful for all the amazing gifts I received today. I was lucky enough to receive specialty chocolates from my friend Denise, light butterfly garden stakes from my friend, Heidi and my friend Carolyn sent me something from Edible Arrangements, but my neighbor received it while I was at dinner. I can't wait to see this tasty treat!

I bought a bunch of balloons home from dinner. Overall, I can't thank each and every one of you enough for your emails, text messages, and gifts in all forms. You made a very depressing time in my life, much better. 

Monday, July 24, 2023

Monday, July 24, 2023

Tonight's picture was taken in July of 2008. It was a few days after Mattie was diagnosed with cancer. Frankly Peter and I were so much in shock and living with heightened anxiety and fear, that I don't know how we functioned. I remember that first month after diagnosis, as I was wired and I couldn't fall asleep. The day captured in this photo, we took Mattie to Roosevelt Island. It was a place we went to escape the city, and be surrounded by nature and peace. Ironically, we visited this Island in good times and bad, and in both cases, it helped to ground us. In tow with us was Mattie's battery powered remote control boat. Mattie got to sail it on the Potomac River. An activity I wouldn't have done prior to his cancer diagnosis (because the River is a mucky mess). But with cancer, everything changed..... my outlook and perspective on life, the world around me, and people. 

Quote of the day: As someone who has lived the nightmare of losing a child, I know that the enormous hole left behind remains forever. ~ Arthur Honegger

I have no particular reason to feel blah today, other than I just do. Despite how I am feeling, it truly doesn't matter, as I have constant chores, care, and tasks to perform each and every day. My dad's memory decline and level of exhaustion are depressing, and he continues to get bitten by mosquitos. Which requires significant time and attention on my behalf, as his dementia leaves him fixated on scratching and causing infections. If I was just managing my dad that would be hard enough, but my mom is also a bundle. She repeats the same stories over and over, and some days I can manage it and others it is more challenging. She is amazed by so many people who have survived and overcome different sorts of tragedies. Ironically I don't appear to be one of these amazing people, which is interesting to me. 

The highlight of my day is receiving several birthday cards. I tie my birthday with Mattie's diagnosis. As he was diagnosed on July 23, and my birthday is two days later. To me these dates will be forever intertwined. 

Peter surprised me with a bundt cake today! Needless to say, after I serve dinner, I am giving everyone a piece to end off the meal on a sweet note. 

Sunday, July 23, 2023

Sunday, July 23, 2023 -- Mattie was diagnosed with cancer 15 years ago today. 

Tonight's picture was taken in July of 2008. Mattie was diagnosed with bone cancer on July 23, 2008, and days after, he underwent a bone biopsy to confirm the diagnosis. In this photo, you can see Mattie was examining his bandage and eagerly wanted to have it removed. 

Quote of the day: In the gardens of memory, the palaces of dreams, this is where we will meet. ~ Alice Through the Looking Glass

A day NEVER to be forgotten, July 23, 2008! A day that changed our lives FOREVER! Fifteen years ago today, Mattie was diagnosed with Osteosarcoma (bone cancer). In July of 2008, Mattie was enrolled in a tennis camp. A week into the camp, Mattie complained of arm pain. We figured he sprained something or had a sore muscle from holding the tennis racket.

While enrolled in camp, I attended a conference in San Diego. Each night while I was away I checked in with Peter and I continued to hear that Mattie's arm pain wasn't getting better. Before leaving San Diego, I made a doctor's appointment to take Mattie in the day after I landed back home.

Fortunately Mattie's pediatrician took our complaints seriously, as I told her the issue had been going on for two weeks, with no improvement. From the doctor's office, we walked over to Virginia Hospital Center for x-rays. I admit that I got very frustrated with the radiology tech, because what I deemed should be an easy x-ray process turned into an hour long fiasco.

After the x-rays were taken, the tech told me to go to a waiting room. I will NEVER forget this room. Mattie and I walked into a room filled with adults. NO hospital representative was in the room, only patients and ONE phone. We sat down and within five minutes the phone rang. NO ONE went to answer the phone, it just kept on ringing. So I decided to pick it up. 

On the other end of the phone line was the radiologist, who asked for Mattie Brown's mom. When I told him I was Mattie's mom, he then said I needed to go right back to the pediatrician's office. I said, ABSOLUTELY NOT! I wasn't leaving that room until he told me what he saw on those x-rays. He did not want to tell me, but I forced it out of him. So I heard that Mattie had osteosarcoma over the phone, surrounded by a group of strangers and Mattie staring at me. I tried not to sound alarmed but it's a bit hard after hearing...... your child has cancer.

July 23, 2008, was my first experience with medical trauma, and unfortunately that was just one of many traumas we experienced as a family. You maybe asking what's with these photos and the Christmas lights in July? Mattie requested that we take all our Christmas lights out on diagnosis day. He did not understand cancer, but he knew enough to know that something was very wrong and that the bright lights of Christmas may help lift all our spirits. The beauty of Mattie Brown..... you are dearly missed today and always. 

It maybe 15 years ago, but the pain of Mattie's loss is felt forever. Our lives and future have been permanently changed. We will never forget. Mattie legacy lives on brightly as he has taught me that Childhood Cancer is NOT Just About the Medicine!