Saturday, May 18, 2024

Saturday, May 18, 2024

Tonight's picture was taken in May of 2009. We were at the Mattie March, the special event Team Mattie planned for him on his school's track. That day the School's baseball team had an important game that they were heading to. Before the team loaded onto the bus to travel to the game, the team's coach handed Mattie a signed team ball and then Mattie got to fist pump each member of the team. A few days later, I heard the team won and they credited that to Mattie's fist pumps!

Quote of the day: Stab the body and it heals, but injure the heart and the wound lasts a lifetime. ~ Mineko Iwasaki

Tomorrow is Mattie Miracle's 15th Anniversary Walk. It is not too late to get involved. Sign up, support a walker or team, and donate. So far our thermometer reads: $83,568!

This is the first Walk, in 15 years, where I had to sit alone and give a greeting on behalf of the Foundation. It was a very unsettling, upsetting, and actually heart wrenching experience. In addition, technology isn't my strength! I read up on how to do a Facebook Live posting and to schedule it to go Live tomorrow. Of course, somehow I screwed that up and the video went live today! At first I was beating myself up about this screw up, but then I took a deep breath and realized, given all I am facing, I am lucky that there is a greeting at all. In any case, if you wish to listen to my four minute greeting, click on the link: https://fb.watch/s8Ee1ricD6/

My three things I am grateful today:

1. My friend Carolyn and her daughter, Ellie (a preschool classmate of Mattie's) visited me this morning! For 15 years, Carolyn has visited me the day before the Walk. She spoils me with treats (the cupcakes and flowers!) and we catch up about the raffle. 
2. The beauty of Mattie Miracle orange colored roses and cupcakes from Victoria's Cakery. A bakery close to where I live! Today, Carolyn and Ellie shared the trick to eating a cupcake. They cut the bottom off the cupcake and then smoosh it on top of the frosting. Making it into a layer cake. I can't wait to experiment with this Oreo technique!
3. After I caught up on some Foundation work, my dad wanted to go out to eat. He truly loves eating out. It is the highlight of his day. Unfortunately since Peter left, we only go out once a week. If my dad had his way, he would go out daily and I wish I could make that happen for them. But I can't, and there is just so much stress, angst, and upset I can own! In any case, because of his insistence, we went to the Cheesecake Factory. I have gotten to know one of the servers there quite well. Her name is Summer. I literally will wait twenty minutes to sit in Summer's section. She treats us that well, and I need as much support as I possibly can get. So I am grateful for Summer and for people like her who take their jobs seriously, who go out of their way to not just do their job, but do it with style, kindness, and caring. I notice and it makes a difference to my existence. Especially when I arrived at the restaurant I felt quite unstable, unsettled, and a feeling of panic was creeping in to overtake me. 

Friday, May 17, 2024

Friday, May 17, 2024

Tonight's picture was taken in May of 2009. Specifically it was at the Mattie March, an event Mattie's care community organized to show support for his incredible cancer journey. Mattie was pictured with Bob, "the Magic Man." Mattie and Bob performed the famous Peanut Booger Trick! Or at Bob called it, the Mattie Brown! Bob came religiously to the hospital to teach Mattie magic the year he was in the hospital. They had a special connection! Also note the cutie sitting behind Mattie, holding the umbrella! That is Brandon, Mattie's best cancer buddy! Loyal until the end. 

Quote of the day: Hearts will never be practical until they are made unbreakable. ~ The Tin Man

Reminder.... This Sunday is Mattie Miracle's 15th anniversary Walk! Are you participating? Sign up, donate, and purchase raffle tickets! We LOVE our supporters. You have made the miracles possible for 15 years. 

This morning after I got my dad up, showered, dressed, downstairs for breakfast and dropped off at his memory care center, I then came home and got back on the phone. This is part two from yesterday's blog posting! I called Amgen, to see if the $1,500 that was sent to my former specialty pharmacy was returned to my co-pay card. Naturally all the work I did on Thursday was a waste of time. Amgen confirmed that my $1,500 co-pay assistance was NOT returned to my account. The representative however, gave me a nugget of information! He suggested when I call the specialty pharmacy to work this out, that I tell them to call Amgen directly, while I wait on the line! That was excellent advice and I stored in my memory bank. 

After I got off the phone with him, I called the specialty pharmacy! The first woman I spoke to gets a F! Rude to no end and basically said that I wasn't a patient of theirs, couldn't find me in the system and therefore couldn't talk to me. She then hung up on me! I wanted to scream. Naturally I called right back and thankfully got a different representative. He found me in the system, and could also see all my call logs from the week. He quickly deduced that he couldn't help me. So he stayed on the line and connected me with the pharmacy's billing department. There I met Debbie. A lovely lady, who wanted to help. She got her supervisor involved who said that they needed to consult with their pharmacy department, because it was possible that the pharmacy itself had to cancel my prescription and thereby trigger the copay to get returned to me. They had me on hold for a while. Turns out, NO! The pharmacist said the issue wasn't on there end, and I have to go back to the billing department. 

The only benefit today was I was working with the A team. Each person (after the one who hung up on me) was competent, very customer focused and I felt was working with me to get this resolved. Which is a blessing. In any case, it was Debbie who connected me with Duane. Duane is a billing manager of the specialty pharmacy and a God sent! 

Want to know the first question Duane asked me? He said, tell me what has been going on and I will try to get down to the bottom of this! Beautiful! He did not make assumptions or dismiss me, but wanted to hear my story. In any case, I suggested that Duane call Amgen while I wait. He indeed did this and Amgen verified that his specialty pharmacy is sitting on my $1,500 co-pay! Once Amgen inserted themselves into my case, things started to move. I wouldn't have even thought to do this, but thanks to the nugget of information I learned from the Amgen rep this morning, I finally got somewhere with the pharmacy. 

The major issue I faced was the pharmacy knew they did not fill my prescription so in their mind that I meant they wouldn't have used my co-pay assistance. But this is where I found a loophole. Because I used this pharmacy in the past, Amgen naturally sent my co-pay to them, whether I planned on filling the script with them or not! I have no idea how they magically found my co-pay today, but I am not fighting city hall. Between yesterday and today, I was on the phone for four hours trying to access $1,500. I will check back in with Duane on Thursday to verify that the reimbursement occurred!

If you have been following along the last couple of days, then you know I am reading a book called Soul Broken. The book is about coping with ambiguous grief. Ambiguous grief is a person's profound sense of loss and sadness that is not associated with a death of a loved one. The person in question is still alive. As Stephanie Sarazin states:

To determine if you or a loved one are experiencing ambiguous grief, consider your answers to the following five statements:

1. You have experienced a significant relationship loss, and your loved one is still living.
2. You have hope that your lost loved one will return to you as they once were or that the relationship will be restored to what it once was.
3. You find memories or the loss of the relationship occupy your thoughts.
4. Your feel disconnected from yourself or others because of the loss.
5. You feel as though this loss has made it difficult to move forward in your life.

I am moving my way through the book. Overall, I am NOT a big self help book kind of person. Typically I find them either trite or too prescriptive. That said, I am trying to take in what she is saying and one of the things she discussed is remaining present (something I learned first hand when Mattie was diagnosed with cancer! Not sure I ever graduated back to being future focused.). She feels that all of us can be grateful for at least three things in our daily life. Trust me when I tell you that I am in such a state most days, that this is a very difficult task. But it is a task that forces me to go back to the basics. 

So with this in mind, the three things that I am grateful for today are:

1. Greg at Amgen (who suggested that when I call the pharmacy, that I tell them to call Amgen directly)
2. Debbie in the pharmacy division of my specialty pharmacy. For her kindness, compassion and desire to help her customers.
3. Duane, the manager in the specialty pharmacy billing department. Who listened, was proactive, and found a resolution. 

Thursday, May 16, 2024

Thursday, May 16, 2024

Tonight's picture was taken in May of 2009. Mattie's community gathered around the school's track and hosted and an amazing Mattie March! As you can see, Mattie was watching a magic show with his friends. Mattie learned to love magic, and the head of his lower school, Bob (The Magic Man), visited Mattie practically weekly in the hospital and taught him the art of magic. I can't tell you how special Mattie felt, as he was able to learn many tricks and perform them for his health care team. Magic made Mattie feel unique (as most of the other children in the hospital couldn't do this!) and gave him pride and happiness. Bending down next to Mattie is Brandon. Though there was a ten year difference between these boys, they were diagnosed around the same time, and were the best of friends. In fact on the day that Mattie died, Brandon came to the hospital and sat with us in Mattie's room. Literally we had an impromptu wake with around twenty people in the room with us, surrounding Mattie's body. Brandon was a kid himself at the time, but he wanted to be there and was a loyal friend until the end. I learned so much about friendship through Mattie's cancer journey. 

Quote of the day: No matter how bad your heart is broken, the world doesn’t stop for your grief. ~ Faraaz Kazi

As a reminder, this Sunday, May 19th, Mattie Miracle is having its 15th anniversary Walk! The event is virtual. It is not too late to get involved. Sign up, support a walker or team, make a donation or purchase raffle tickets. Check out our website! Despite all that I have going on, we have raised over $75,000 so far. help us get to our $100,000 goal! 

I mentioned last night that I received an email from the infusion center where I received my Prolia injection in March. The email contained an invoice for close to $2,000! Needless to say, I lost it. Particularly when the infusion center told me that I wouldn't be paying more than $275. A big difference! After all I purposefully decided not to get these shots at my doctor's office, because the cost was going to be much lower at the infusion center. 

I am facing many firsts over the last eight months. Today I tackled this billing issue. I started by calling the infusion center and understanding their billing process. I learned that they submitted the claim to my insurer as a medical benefit. When I used to get Prolia through my doctor's office, they billed it as a pharmaceutical benefit. The doctor's office assured me that the drug would be more cost effective to me if I went to the infusion center. Why? Because the center bills for the drug through major medical. 

Any case, the infusion center explained the process and also explained my insurance plan to me. I basically have to meet a $4,000 deductible first, before the insurer will pay for 90% of the drug. I did not know this, but the infusion billing department truly helped me understand the two tiers of billing by my health plan. They also encouraged me to reach out to Amgen. I have an Amgen co-pay card. Like most patients receiving Prolia, the co-pay card is a lifesaver. Amgen will pay up to $1,500 a year for these injections. That basically helps to cover the cost of at least one of the two required yearly dosages. 

I called Amgen today and the fun began. Amgen said that I already used my co-pay amount for the year! I told him that wasn't possible. So he put me on hold to get more information. Turns out that Amgen sent my $1,500 co-pay to my insurer's specialty pharmacy. However, the infusion center does not work with this specialty pharmacy. So in essence, my $1,500 was lost somewhere in the specialty pharmacy system. Therefore once off the phone with Amgen, I called the specialty pharmacy. I assure you this was an hysterical phone call. I spoke to two different women. Both of whom told me that there was no way that my co-pay would have been used by their company if the script wasn't filled. They wanted to dismiss me and to call back Amgen. 

I wasn't letting accepting this or taking no for an answer. I insisted that they help me find this money! I was placed on hold twice, for long periods of time. But I think at the end of two hours, they found the money and submitted the reversal of the claim. They told me to give it 24 hours for the money to go back to my co-pay card. Needless to say, tomorrow I will call Amgen to confirm that the money is back and then figure out how to get this co-pay amount over to the infusion center. Literally I am getting an education on the whole process. What I do know, is that to get this addressed required patience, time, persistence, and asking a ton of questions. 

My three things that I appreciated today: 

1) I saw a playful Jack Russell Terrier while at Starbuck's today. This pup reminded me of JJ, our resident Jack Russell who lived near us in Washington, DC.

2) Starbuck's was playing 80s music today! It brought me right back to college. Happier times. 

3) Interfacing with several helpful people today who patiently answered my questions and tried to help me with my astronomical Prolia bill. 

Wednesday, May 15, 2024

Wednesday, May 15, 2024

Tonight's picture was taken in May of 2009. This was what a typical physical therapy session looked like for Mattie. We were in the middle of the pediatric unit hallway, and as you can see, we took up the entire space. Down the hallway, you will see a walker and wheelchair. Both belonged to Mattie. Mattie did not want to use his walker, but instead employed me as the human walker. Honestly I did whatever it took to get Mattie up, moving, and engaged. 

Quote of the day: And they can’t understand, what hurts more—missing the other person, or pretending not to. ~ Khadija Rupa

It was another day of juggling a thousand things. In addition to being the jack of all trades, I am learning the art of accounting. Truly I don't get one day of peace, as I am constantly doing tasks, working through crises, and tonight, when I was about to try to unwind, I received a bill in my inbox about my Prolia injection. When I saw the bill, I flipped out. The infusion center quoted me a price of $275. However, the bill is for close to $2,000. Honestly things just keep piling up on me and I truly ask.... how much can one person take? 

I literally was so strung out today, that I wheeled a big garbage bin into the backyard, and even in the rain, I weeded, picked up sticks, and trimmed things. I was out there for 90 minutes, and came away with a ton of debris. I have so much stress, anxiety, and pent up frustration that the only outlet I have is being outside. As you can see, I brought some roses from the garden inside. 

It is 9pm, and all I can say is God give me strength. May this heavy weight of my life lighten in time. I would even settle for a glimmer of hope, of which right now I see nothing positive. I am reading a book that I mentioned last night that discusses the importance of seeing three positive things in one's day. I am going back to basics, as I am thankful for my health, I am thankful for roses, and hummingbirds. 

Tuesday, May 14, 2024

Tuesday, May 14, 2024 -- Mattie died 763 weeks ago today.

Tonight's picture was taken in May of 2009. Team Mattie coordinated the "Mattie March" for us on the school's track. It was a beautiful, touching, and memorable day. Hundreds of friends from all of our communities came out to show Mattie their support. At the time Mattie was headed into the end of his treatment protocol, and we all had high hopes that we could stabilize him. As you can see from this photo, Mattie was surrounded by all his care providers and friends from the hospital. My joke that days was..... who was left at the hospital? Since everyone was literally with us! Doctors, nurses, art therapists, child life, child life interns, and volunteers were all by our side in this photo, and I will never forget any of these amazing women who helped us manage the impossible. 

Quote of the day: The depth of our grief is equal and opposite to the depth of our love. ~ Stephanie Sarazin

My lifetime friend Karen went to see a movie about imaginary friends. When I asked her if it was based on a true story, her response was something like.... What? It is imaginary! But here's the thing, when I was five or six years old, I had two imaginary friends. So I told Karen the story! Not sure she ever knew about my imaginary friends, John and Alice. John and Alice were NOT my age. They were instead in the 50s and married. They were truly dysfunctional, always fighting, and arguing, and somehow, they sought out my help! Hysterical no? How I concocted this at age five is beyond me. I did not grow up in a dysfunctional home, I did not base this couple off of my own parents, and in fact, I knew no one like John and Alice. Yet there they were. Every afternoon, out they came and I listened to each one and tried to help them understand one another and have appreciation for how the other felt. 

Now you could conclude that either I was unstable from an early age or that I was truly creative, with the inquisitive desire to listen, to try to empathize, and understand the complex world around me. Naturally I am going with the latter. There is all sorts of research on children with imaginary friends. Some say we are highly intelligent and others say we are likely to have a higher emotional understanding as we age. Who knows, but what I do know is all my life, people were drawn to me. Because they wanted to talk, they wanted to tell their stories, they wanted to be heard, understood, and to get feedback and guidance. Even when I was in elementary school, kids would meet up with me after school. They wanted to talk! I can't tell you how many times I kept my mom waiting in the car, until I finally showed up. Perhaps that was indicative of what my career choice was ultimately going to be, but friends always told me they felt better after talking with me. 

What I do know about myself is that I try to treat everyone around me with respect, kindness, compassion, and freely give of my time and energy. Or at least this is how I used to be up until September of 2023. Once Peter left me, I would say that my world has been rocked, turned upside down. Not unlike being traumatically shaken in an earthquake. The only difference is the earth isn't moving, no one else is feeling it, therefore in essence......I am shaken alone! 

I began reading Stephanie Sarazin's book, Soul Broken. She coined the term ambiguous grief, which is a different kind of grief than you may be familiar with.  It is the feeling experienced from the loss of a loved one who is still living, accompanied by a change in or death of the relationship. Because at times I feel like I am absolutely losing my mind, in a cycle of desperately trying to make sense of my existence, and what I find (and she confirms this) is that I self isolate. I have no desire to talk, to explain my existence, nor do I have the energy to be vulnerable to share my deepest darkest feelings and thoughts with others. Those of us living with broken souls, self protect. A feeling I learned after the trauma of losing Mattie. I never saw or thought I would ever be dealing with this type of ambiguous grief, which is why her book is helping me find the words for the tumultuous feelings and thoughts that flood my mind and heart each day. 

Ironically I am facing two ambiguous grief journeys simultaneously. As I face on a daily basis my dad's mind being ravaged by Alzheimer's disease and the unexpected and shocking demise of my long term marriage. Dealing with either of these issues would be hard enough, but at the same time, it is devastating. At the moment, I see no way forward. AT ALL! To me life is over, and if I wasn't caregiving for my parents, I most likely would be a danger to myself. Which is why, I am trying to turn to others who have walked a similar path to understand their experiences, their insights, and how they have found the hope to keep on living and planning for a future. 

Monday, May 13, 2024

Monday, May 13, 2024

Tonight's picture was taken in May of 2009. Mattie had been working on this creation for weeks with his art therapists. Mattie made this clay vase in clinic, glazed it red (one of my favorite colors), and with his therapists designed tissue paper roses. This gift was presented to me for Mother's Day! To this day, I showcase this vase in our family room! It is a priceless piece to me. 

Quote of the day: It's amazing how someone can break your heart and you can still love them with all the little pieces. ~ Ella Harper

Some days are better for me than others. When I say better, I mean I feel like I can find a way through the day. Then there are other days like today, when I feel very anxious, very stressed out, and truly perplexed about my past, present, and future. I woke up at 5:30am, and typically when I wake up, my body is basically jolted awake. Since Peter has left, I start everyday off in a panic. I can feel my blood pressure rise, my head pounding, and this crazy fluttering in my ear. It is this fluttering which has caused my doctor to send me for an MRI in a week. 

The highlight of my day was I received a chocolate delivery from my cousin Cheryl. Though she and I have never met each other, she has become an incredible friend, support, and she is someone I trust. Given my life's circumstances, it probably makes sense to my readers that I do not give trust away very easily. 

The beauty of the chocolates inside. At the moment, four of these cuties have been devoured. Chocolate has always been my drug of choice!

Since Peter has left, I have gotten connected on-line to a woman in England. She is going through something quite similar as me. Though I met her in a support group (which I lasted in for only ONE session), we have remained connected ever since. Not just connected, we write to each other daily. What she and I are contending with on a daily basis is hard to describe unless you are living it. In some cases, sharing our stories, not only validates what we are experiencing, but we it eerie how we are thousands of miles apart and yet our thoughts and feelings are quite similar. Overall most people who are contending with what we do each day, are receiving intensive supports through counseling, medication, self help groups, and you name it. I of course do not have the time for any of this because of my caregiving demands. Nonetheless, despite how busy I am, it doesn't mean I am not acutely aware of the nightmare I am living. It is a nightmare that impacts every member of my household. 

If it is possible to die of a broken heart, I will be the medical world's case study. It is a taxing existence between being abandoned and managing the around the clock care of two people with dementia. As I say, I may not ever get over this, as there is just so much heartache one person can absorb. 

Sunday, May 12, 2024

Sunday, May 12, 2024

Tonight's picture was taken in May of 2007. We took Mattie to Tower Oaks Lodge in Rockville, MD for Mother's Day brunch. As Peter was snapping the photo, he asked Mattie to show how he feels about me. As you can see, Mattie crossed his arms over his heart, to signify that he loved me. I remember this moment in time like it were yesterday. If anyone would have told me what would happen to my life in both 2009 and 2023, I would never have believed them. In my wildest imagination, I never thought Mattie would get cancer and die. Similarly if someone would have told me that Peter would leave me in the future, I would have laughed. None of these things seemed like possibilities. Frankly, I am not sure I will ever accept either occurrence in my life. As you might imagine, Mother's Day is a hard day for me. Now without Peter, the day is down right impossible, because it feels like I have lost another piece of Mattie, my identity as a wife and mom, and the ability to keep Mattie's memory and legacy alive with my husband. 

Quote of the day: When we miss someone often, what we really miss is the part of us that with this someone awakens. ~ Luigina Sgarro

Years ago, Mattie created this lovely fountain for me with Peter. It was a Mother's Day gift they surprised me with. When Mattie died, we started a new tradition.... on Mother's Day this fountain would get turned on for the season in memory of Mattie. This tradition died when we moved into our house. Seeing this photo is actually quite painful for me on every level. It symbolizes tremendous loss. 

We took some photos with our family friends on Friday and Saturday. This is me with Ronee. In 1984, in celebration of my high school graduation, I went on a European teen tour with Ronee. She was my tour leader. My mom and Ronee's husband were teachers together in NY. So they have known me since I was five years old. 

Friday's dinner!

Saturday morning, our neighbor, Judi came over. Judi snapped this photo of us! Seeing this photo reminds me how much I love our kitchen. For years, when living in the city, my kitchen was the size of a closet. When looking for a house, I wanted the kitchen to be bright and spacious, because to me it is the most important room in the house! In fact the whole house has beautiful natural light, regardless of whether the sun is out or not. Ronee and Eugene reminded me this weekend that our house is special and they understand why I fell in love with it in 2021. 

Despite how I feel about the day, I took my parents out to brunch. We go to the same restaurant every Sunday, and when we got to our table, Cheryl (our wonderful server) had Mother's Day gifts awaiting us! The restaurant had a few specials today and I happen to love soft shell crabs, so this was a treat. 

My mom!

My dad and me!

One of the gifts Cheryl gave me! Symbolic of my Mattie, as all butterflies are Mattie gifts.