Saturday, January 27, 2024

Saturday, January 27, 2024

Tonight's picture was taken in January of 2009. Mattie was struggling with how to walk again. For a while, his physical therapist, Anna, had Mattie work with a typical front facing walker. That day, she got the idea of trying a reverse walker. Mattie literally took a few steps and Anna threw her arms up in victory. Despite all the best efforts, Mattie was too debilitated and managing pain to ever walk again independently. It was a sad reality that we faced on top of coping with cancer. This frustrated Mattie on every level and contributed greatly to his depression, anxiety, and trauma. 

Quote of the day:  Your place I’ll hold, you will be missed, the fur I stroked, the nose I kissed. And as you journey to your final rest, take with you this … I loved you best. ~ Jim Willis

Last night I posted one of my favorite photos of Sunny on our lawn. It was pretty soon after we moved into the house. Whereas this photo was taken only a few days before Sunny died. In order to get to the lawn, I had to carry his back end, but I knew being outside was where he was happiest. What I learned too is as dog's get older, the fur around their eyes turns white. I do not remember that happening with the dog I had as a child, but naturally that was decades ago. Whenever I look outside now, I always envision my regal boy sitting there on the lawn. He loved is backyard so! Miss him greatly. 

Today was a royal blur. Between caregiving and Foundation work, I had my hands full. But I went out to get the mail, and I received two beautiful cards. Ironically they were from friends in Boston, from when I went to graduate school at Boston College. I met three amazing women while getting my MS in biology, and all three of these women are still a part of my life. Keep in mind I graduated from there is 1994, so it is a testament to our friendship. Their support and sentiments are greatly appreciated. I have also received lovely gifts to Door Dash too, which will greatly help on nights were I just don't have the energy to cook. I have been blessed with an amazing support network of women and all the outreach helps me get through the long days here. 

Friday, January 26, 2024

Friday, January 26, 2024

Tonight's picture was taken in January of 2009. Mattie was in the playroom with his best buddy in cancer, Brandon. Despite their age difference, these two were close and had a special friendship. By that point in time, Brandon was off cancer treatment, but came back to the hospital on a regular basis to visit with Mattie and the care team. Brandon did not live close to the hospital. It was practically a two hour trip each way, a fact that never went unnoticed by me. Days and nights were very long for us in the hospital, and Brandon knew this all too well. Which was why his visits were deeply appreciated by all of us. 

Quote of the day: Companion, friend and confidante, a friend I won’t forget. You’ll live forever in my heart, my sweet forever pet. ~ Susanne Taylor

This is one of my favorite photos of Sunny at our house. It was taken not long after we moved into the house in 2021, and Sunny was thrilled to have grass, trees, and his own backyard. He was a happy camper. I thought he looked so regal on the lawn, that I snapped this photo! There will never be another Sunny. He was one of a kind. 

My mom is pressuring me to get another dog and my answer is NO! Dogs require time and attention, and I don't have time to care for myself, much less devote time to bond with a dog. I just won't do it. 

This morning, after taking my dad to his memory care center, I came back home and picked up my mom to take her to her annual physical. I am happy to report that since my mom moved in with me in 2021, she has gained 15 pounds. Overall, she is in good shape considering her age. The doctor gave her a cognitive test, and I have to tell you..... what a joke! These questions do not accurately assess memory issues. My mom maybe able to manage the questions, but truthfully in her day to day living, she needs a great deal of support. What I am happy about is that I reached out to her rehab doctor and he has agreed to prescribe my mom in-home physical therapy, so she can work on balance. This is a major accomplishment for the week!

After the doctor visit, I drove to Mattie Miracle's mailbox and picked up a ton of mail. Of course I did not look it over carefully, and once home I noticed that I have to go back next week to see if I have to pay our annual mail box fee. Keep in mind that going to the mailbox is a 40 minute drive each way! Truthfully it never ends and I am constantly jumping from one task to the next, FRENETICALLY, that I can't think straight. I am living under constant stress, constant demands, and constant tasks. 

This afternoon I took my mom to Starbucks for her tea and snacks. While there, we ran into the local author that we have gotten to know as well as one of our neighbors. This 90 minute break was the only peace I got all day. Because once I picked up my dad at the memory care center, I got home and jumped onto an hour long Mattie Miracle board meeting. I wish I could say it ended there! NOPE. I then had to type up meeting notes, do some Foundation work, fold laundry, make dinner, serve dinner, clean it up and the list goes on!

I would like to end tonight's blog with a joke my mom's doctor told us today. He admits he would like to be a stand up comic. When you see him, you get the medicine but so much more! Enjoy...........................

3 men, a fridge, and heaven

Three men were standing in line to get into heaven one day. Apparently it had been a pretty busy day, though, so Peter had to tell the first one, "Heaven's getting pretty close to full today, and I've been asked to admit only people who have had particularly horrible deaths. So what's your story?"

So the first man replies: "Well, for a while I've suspected my wife has been cheating on me, so today I came home early to try to catch her red-handed. As I came into my 25th floor apartment, I could tell something was wrong, but all my searching around didn't reveal where this other guy could have been hiding. Finally, I went out to the balcony, and sure enough, there was this man hanging off the railing, 25 floors above ground! By now I was really mad, so I started beating on him and kicking him, but wouldn't you know it, he wouldn't fall off. So finally I went back into my apartment and got a hammer and starting hammering on his fingers. Of course, he couldn't stand that for long, so he let go and fell-but even after 25 stories, he fell into the bushes, stunned but okay. I couldn't stand it anymore, so I ran into the kitchen, grabbed the fridge and threw it over the edge where it landed on him, killing him instantly. But all the stress and anger got to me, and I had a heart attack and died there on the balcony."

"That sounds like a pretty bad day to me," said Peter, and let the man in. The second man comes up and Peter explains to him about heaven being full, and again asks for his story. "It's been a very strange day. You see, I live on the 26th floor of my apartment building, and every morning I do my exercises out on my balcony. Well, this morning I must have slipped or something, because I fell over the edge. But I got lucky, and caught the railing of the balcony on the floor below me. I knew I couldn't hang on for very long, when suddenly this man burst out onto the balcony. I thought for sure I was saved, when he started beating on me and kicking me. I held on the best I could until he ran into the apartment and grabbed a hammer and started pounding on my hands. Finally I just let go, but again I got lucky and fell into the bushes below, stunned but all right. Just when I was thinking I was going to be okay, this refrigerator comes falling out of the sky and crushes me instantly, and now I'm here."

Once again, Peter had to concede that that sounded like a pretty horrible death. The third man came to the front of the line, and again the whole process was repeated. Peter explained that heaven was full and asked for his story.

"Picture this," says the third man, "I'm hiding naked inside a refrigerator..."

Thursday, January 25, 2024

Thursday, January 25, 2024

Tonight's picture was taken on August 4, 2009. I remember this moment in time like it were yesterday. I had a phone interview today, and the reporter asked me if I could recall the day I learned that Mattie's cancer became terminal. In essence when we moved away from a cure and to end of life care. Indeed I can, in fact it is a day I will never forget. After demanding scans, his doctors finally complied and Mattie had an ultrasound followed by a CT scan that day. A mother knows best! I did not buy the notion that Mattie was addicted to pain meds or that he developed an eating disorder. Excuses I heard to explain his symptoms! This did not fit Mattie's personality. Instead, I feared the worst and unfortunately I was correct. Mattie was in terrible pain and his cancer spread to all his organs. In any case, while awaiting the test results, Mattie and I went to sit in the hospital's garden area. By the garden was this art therapy elephant filled with motivational tiles. One tile was of Curious George, designed by one of Mattie's nurses, and was dedicated to Mattie. Mattie loved to visit this elephant and his tile. Can you believe that big smile when Mattie was suffering in so much pain?! Amazing. 

Quote of the day: Before you get a dog, you can’t quite imagine what living with one might be like; afterward, you can’t imagine living any other way. ~ Caroline Knapp

Tonight's quote is so true! Before we adopted Sunny, I truly was worried that I would not be able to handle a dog. I doubted my abilities! Especially living in the city without a backyard. However, Sunny was always grateful to have a loving home and truthfully we could have lived in a cardboard box, and he would have been happy. Sunny was the perfect name for my boy, because his disposition was SUNNY!

Sunny liked to keep an eye on me. When I was working upstairs in Mattie's bedroom, Sunny wanted to make sure I did not get passed him without him knowing it. What better way to track what was going on, on both the first and second floors! Sunny was over 60 pounds and yet found a way to park himself on a step! Notice as I was snapping this photo, Sunny looked up at me. He tracked my every move, and when we first adopted him this was an adjustment, but it was something I grew to love and appreciate. 

Today was a whirlwind. I dragged myself out of bed at 7:15am. I just couldn't get up. When my dad's physical therapist got to our home, I tried to make some phone calls for my mom regarding my dad's health savings account. When I tell you this call was painful, I am not kidding. I was on the phone for 2.5 hours! I am NOT exaggerating. I went from Via Benefits, Alight, then to AT&T Benefits, followed by Warner Media, and finally back to AT&T Benefits. By the time I spoke to my dad's employer, Warner's, I told the HR person.... don't you dare transfer me back to AT&T. So literally he kept me on the line while he contacted a supervisor at AT&T who is now investigating our issue. Truthfully I felt like I went ten rounds. I had wanted to go grocery shopping while my dad's PT was here, but that wasn't in the cards. Well not until 5pm, when I pushed myself to go grocery shopping, before making dinner. 

After that harrowing call, I jumped on a conference call with a reporter from the NY Times. She contacted me because she is interested in learning more about the Psychosocial Standards of Care, Mattie's story, why we created the Standards, and the importance of bereavement care. The reporter also lost a child to cancer, so she understands the lived cancer experience. We talked about a whole bunch of things and what I have to say is even though Mattie's journey was in 2008, I can recall so much of our journey, as if it were yesterday. 

She asked me how I learned that Mattie was dying. We both have a similar experience in the sense that no doctor addressed the issue point blank with us. On August 5, 2009, we did meet with Mattie's oncologist and she told us that there were no other treatment options for Mattie. She did not say he was dying per se, but she said that we were going to start Cyber Knife (radiation) to help reduce his pain. There was a task, a to do! Which was perfect, because when I was fighting hard for over a year, being proactive and doing something was key. But to this day, I will always remember what this physician told me and I shared it with the reporter today. 

The doctor spoke to us about HOPE. She said along a cancer journey, there is always hope. Hope evolves and changes throughout the journey. In fact at each of the different stages of care, we may have hoped for something different. But she went on to say that HOPE is needed and of utmost importance at end of life. Instead of hoping for a cure, we turned our active attention to hoping that Mattie would be in less pain, and that he would die in dignity. Again, this charged us with a to do, and in those last few weeks, I kept living in HOPE until Mattie's last breath. I was his fierce advocate and protector until the end, as he died in my arms, after a painful six hour death. Mattie was given a lethal dosage of propofol, to stop his heart. His bed looked like a mind field, filled with syringes and IV pain meds, and hearing the flat line on the monitor will remain forever in my mind and body. 

The reporter asked me about the connections we have with Mattie's care team after he died. I realize our situation is not like every bereaved parent's. But in our care, when Mattie died on a Tuesday, his oncologist literally wrote me an email every Tuesday for two years after Mattie died. I am NOT kidding. In addition, we are still connected with many of Mattie's nurses, his surgeons, his social worker and art therapist. In fact, many of these individuals are personal contributors to Mattie Miracle, even today. I can't tell you how much it means that these Mattie legacy keepers remain in our lives. I attribute this to the power of Mattie, to the amazing and intense connections we made with our care team, and the respect the team had for our undying love. When the article is published, I will share it here, but what I do know is the Psychosocial Standards of Care are historic! They were our brainchild and they will forever be Mattie's legacy.... Mattie's mark on the world to help other children with cancer and their families. 

Wednesday, January 24, 2024

Wednesday, January 24, 2024

Tonight's picture was taken in January of 2009. Mattie was in New York City, in order to start his experimental treatment. When we checked into the hotel, Mattie's child life specialist back in Washington, DC sent a care package. Filled with all sorts of items to keep Mattie busy. It was such a thoughtful and meaningful gift, and it reminded us of the caring and loving team we had back home. I will never forget these incredible women and how much they assisted Mattie and me. On an aside, do you see the fleecy blanket near Mattie? Well toward the end of Sunny's days with us, I pulled out this blanket for him. He absolutely loved it and I believe that Mattie was guiding Sunny to heaven. 

Quote of the day: I thank the Lord that there is one thing in this world that money can’t buy, and that is the wag of a dog’s tail. ~ Josh Billings

I LOVE this face! Two weeks ago today, I put Sunny to sleep. How I miss those eyes, nose, face, and my furry companion. In so many ways I think Sunny was part human. He was deeply feeling, loving, loyal, and helped me re-engage with the world when I thought my heart was completely broken after Mattie died. 

I still come downstairs in the morning and look for Sunny, I still get confused when cooking, because I don't have a pal to cook extra for, and most of all, I miss my Sunny hugs, our deep stares into each other's eyes, and the love that only Sunny freely gave me. 

This morning after getting my dad to his memory care center and helping my mom process more health insurance paperwork, I sat down and contacted Cigna. Cigna is my health insurer. Though it is January and my Prolia injection for bone density has to be administered in the spring, I know from previous experiences that I have to start the process early because between insurance and my dysfunctional doctor's office, it can take months for me to get the drug. I wasn't sure how the call with Cigna was going to go, but my representative's name was "Happy." She said she tried to live up to her name. She did! Honestly talking to her today was like receiving a gift. Imagine a customer service rep who actually listens, wants to help and is pro-active at solving the problem. Literally after explaining the process I needed to follow, she put me on hold and spoke to my doctor's office. Happy confirmed to me that this is where the problem lies, not with my insurer. My doctor's office even gave Cigna a hard time. In any case, Happy told me the difference between a medical benefit and a pharmaceutical benefit and the process I needed to follow to get the medication as a medical benefit. 

But here's the kicker. My doctor's office will not order me the drug as a medical benefit. They have given me some sort of convoluted explanation that prevents them from doing so. They are willing to order and administer the drug to me in their office, but it would be billed as a pharmaceutical benefit and I assure you the drug is expensive this way (close to $2,000). I have paid it in the past, but I want to see if it is more economical as a medical benefit. In order to bill it as a medical benefit, they have to send the script order over to an infusion center. I would have to get the injection at this center rather than the doctor's office. I will try it, but overall I like to stay away from infusion centers. One of the many types of drugs administered at these centers is chemotherapy. As strange as it sounds, the impact of Mattie's diagnosis will always be with me and being around these types of infusions sets me off. But of course my doctor's office could care less! 

This evening, I met with my therapist. One of the things I shared with her were excerpts from this blog. I have been writing for 15 years, DAILY! I have NEVER missed a day. Writing for me is therapeutic. Remember I started writing under the worst of circumstances (Mattie undergoing cancer treatment). In a way writing is a passive process, because I am expressing myself, but there is NO response, no cross talk, and typically little feedback. But that is okay, that doesn't stop me from writing. In any case, I wanted to share with the therapist some of my thoughts and feelings. After I read a few submissions, I could see she was visually moved. She literally said to me.... "you are a beautiful writer!" AHHHH, how nice to hear. When I was a teenager, I remember my English teacher told me often.... "you are a writer!" I loved Mrs. Van Epps, who unfortunately died in TWA flight 800. I will never forget learning she was on that flight, because this teacher has a profound impact on my life. She gave me the confidence to express myself in word! I am quite certain, more than ever, that I do have a book within me and perhaps that should be what motivates me now to keep living and moving forward. 

On my way home tonight, my neighbor had me stop by her house. She just got back from her trip and she bought me a pie today! The pie was to say how sorry she was about Sunny's death. 

A sweet ending to a very long and emotional day. 

Tuesday, January 23, 2024

Tuesday, January 23, 2024 -- Mattie died 747 weeks ago today. 

Tonight's picture was taken in January of 2009. Mattie was home and between treatments. Our resident Jack Russell, JJ, came over to visit Mattie. Mattie loved JJ, and JJ loved Mattie. They practically grew up together. However, once Mattie had his limb salvaging surgeries he was far more cautious and therefore by that point, was a bit scared that JJ was going to jump on him. JJ remained on a leash for these visits and that put Mattie at great ease. Mattie always wanted a dog, and I am glad he had the companionship of JJ. 

Quote of the day: I have sometimes thought of the final cause of dogs having such short lives and I am quite satisfied it is in compassion to the human race; for if we suffer so much in losing a dog after an acquaintance of ten or twelve years, what would it be if they were to live double that time? ~ Sir Walter Scott

As crazy as this may sound, I always thought that Mattie sent me Sunny in 2016. The kind of bond and love that Sunny showed me at times reminded me of that special connection I had with Mattie. Obviously different since Sunny was a dog, but nonetheless, both boys are irreplaceable in my life. 

On holidays and anniversary dates, Sunny always came with me to Mattie's tree or to visit Mattie's pavers at the hospital or church in Georgetown. He was my constant companion to the end and without him I feel more alone than ever. 

Do I view myself as separated? The short answer is no. Peter left in September of 2023, so in theory we have been apart for four months now. But in all reality, it has been a blur for me. During these four months, I have had to become smart in finances, bill paying, managing my mom's bills, processing their insurance claims, house maintenance and the list goes on. This is on top of my already full plate of caregiving for two 88 year old's, cleaning, laundry, cooking, grocery shopping, companionship, chauffeuring my parents around, coordinating appointments and of course running Mattie's Foundation. There is only one of me and I am doing the work of five people. Most days I just plug along because there is no other option. 

But I am human and all of this is taking its toll on me. I remain perplexed regarding Peter's decision to separate from me. We have been through so much together but always we had each other. I met Peter when I was 19 years old, and in so many ways, I can't view my world without Peter in it. Our lives are very intertwined, and our love has always been solid and grounding. Which maybe why my brain can't even go there right now, because if it does then I have to question everything we experienced together. I know the reality and in my heart of hearts perhaps it is those feelings that make me keep the faith, that refuses to allow me to give up hope. My hope is that in time, the power of reconciliation will be possible.   

This afternoon, I took my mom for tea at our local Starbucks. My mom and I go there several times a week, to get away from our reality and the house. In so many ways, it is like my safe space, where I try to forget pain, hurt, and confusion. While ordering tea today, I got to talking to one of the baristas. I practically know each person working there, so much so, that when I enter the store, they start making our order. In any case, the young lady I was chatting with today said to me that she and the entire staff appreciate me. That I am always so kind, listen and take the time to get to know them, and that they can tell I am very thoughtful and patient (as they see me with my mom). Truthfully, I wasn't expecting any of this feedback today, but now more than ever, I need to hear these kind words, because when the love of your life leaves you, it is hard to not be left with many questions, such as..... what on earth did I do? Am I not the kind of person someone wants to spend time with? Do I not care deeply about other people? The point is, I am left doubting myself, doubting my existence, and doubting life in general. 

Monday, January 22, 2024

Monday, January 22, 2024

Tonight's picture was taken in January of 2009. Mattie was home in between treatments and a teacher from Mattie's school came over to give Mattie a piano lesson. Mattie received this keyboard from the hospital volunteer duo... Jerry and Nancy. Mattie loved music and before one of our neighbor's moved out of our complex in the city, she gave us her upright piano so Mattie could learn how to play. To this day, I still have Susan's piano in our home. The sad part is Mattie never got the opportunity to truly take consistent lessons. 

Quote of the day: Dogs die. But dogs live, too. They live brave, beautiful lives. They protect their families. And love us. And make our lives a little brighter. And they don’t waste time being afraid of tomorrow. ~ Dan Gemeinhart

This photo was taken in Mattie's room in our townhouse. After Mattie died, this room became my office. When I was working there during the day, I had my Foundation co-workers near by. Look at that Sunny smile! 

Right from the very beginning, as soon as we brought Sunny into our home, he immediately got along with Indie. On day one.... He gave her a big greeting and they sniffed noses. With Sunny's death, Indie has kicked it into high gear. She has become more vocal, does a lot of weaving around me, and follows me all over the place. She is channeling her inner Sunny. Of course there will never be another Sunny! He was the best dog ever. 

This morning, after doing my usual routine (fed Indie, got showered and dressed, made breakfast, cleaned out Indie's litter box, vacuumed the first floor, cleaned kitchen counters, then woke up my dad, made their bed, got my dad showered, dressed, and downstairs for breakfast, threw out the trash and started the laundry), I got my dad in the car and dropped him off at his memory care center. Keep in mind everything I just listed above is done by 10am. When I got home, I got my mom moving and into the car, and drove 30 minutes into the city for my mom's hair and nail appointment. 

While my mom was getting her hair done, I got my nails done. I have know my manicurist since 2009. We have been through many ups and downs together and her sister is my hair stylist. I have know my hair stylist since I was around 25 years old! My point is, this is me! When you enter my life, I invest the time in getting to know you, I become attached to you, and I am honored to have developed so many beautiful and loyal friendships throughout my life. 

It is very clear to those who know me that I am carrying a heavy burden. I look exhausted, I have lost over 20 pounds, and emotionally I am drained. Both my manicurist and hair stylist today showered me with comfort, understanding, and love. Ironically they view me as one of the strongest and most loving women they know. High praise indeed, of which I wasn't expecting to hear. As I told them, I did not set out in life to achieve this distinction, but I have been given a challenging lot in life and there are two options as I see it.... collapse and give up on life, or take one day at a time and try to find a way forward. Honestly I can waffle between both extremes in any given day. 

What prevents me from throwing in the towel. Well first of course I have my parents to care for, and if someone needs me, I rise to the occasion to give it my all. But second there are a core group of friends, my cousin, Peter's cousin and his parents who are there for me daily. I can't tell you what a difference a supportive text makes in my life. Perhaps to these individuals this may not seem like much, but to me it means the world and these lifelines keep me afloat. They are my life boats!  

Sunday, January 21, 2024

Sunday, January 21, 2024

Tonight's picture was taken in January of 2009. We took Mattie out to lunch on the hospital campus to celebrate the fact that he completed a long bone scan without needing sedation. Scans were difficult for Mattie, given his experience with his initial scans during diagnosis. It took a lot of patience and a lot of distractions to keep Mattie calm in these scanning machines. In addition, Mattie couldn't eat or drink anything from midnight the night before, in order for the contrast for the scan to work effectively. Mattie's child life specialist and art therapists promised Mattie they would go out to lunch with him if he managed his way through the scan. Mattie was determined! Mattie had a great lunch at the Japanese tatami table and got to have all the shrimp he wanted. 

Quote of the day: Nobody can fully understand the meaning of love unless he's owned a dog. A dog can show you more honest affection with a flick of his tail than a man can gather through a lifetime of handshakes. ~ Gene Hill

Look at firefighter Sunny! Was he not the cutest pooch? Sunny was rehabilitating from his second knee surgery in 2021. Ironically Sunny's surgeries took place during COVID, so I NEVER met his physical therapist face to face until the very end of his second treatment. Kristy loved Sunny and she dressed him up for the clinic's Halloween contest. I absolutely loved Sunny's eyes, nose, and smile. They are etched into my memory and when I get down and stressed out, my happy place is to envision Sunny's eyes, looking deep into mine. 

After my usual chores today, I ran out to get gas for the car and to mail some bills. I can safely say that our neighborhood does a lousy job plowing the streets. When I moved outside the beltway of Washington, DC it NEVER dawned on me that the county wouldn't plow the roads for snow! Instead our neighborhood relies on private contracts through our Home Owners Association. In my opinion this company gets a D, and I would fire them and start looking for other options. Others may not mind the poor conditions on the roads, but given that I have little to no experience driving on snow/ice covered roads, I feel absolutely limited. But I did a great job with our driveway and have no problem getting up and down it! So one problem checked off my long, long list. 

Later today, I took my parents out to brunch. We go out only once a week now, and we go to the same place each Sunday. While dining out, I couldn't help but observing couples dining together, or larger parties having a great time conversing. Truthfully seeing this struck me in the heart! I felt like my whole body was aching, because in comparison to these individuals my life is a mess, it is in shambles and I range from coping to wondering if I can make it to tomorrow. Certainly everyone has their burdens and many people cover it well, so truthfully I do not know what my fellow diners are coping with, but from my perspective, I have had MORE THAN enough in my life and I wonder how much more I can endure? At times I wonder what on earth I did to deserve all of this. Again, there are no answers, just like there has never been an answer to why Mattie got cancer and died.