Saturday, September 14, 2024

Saturday, September 14, 2024

Tonight's picture was taken in August of 2009. Mattie was not a happy camper. He was sitting around the clinic's art therapy table and was feeling miserable. He was connected to portable oxygen and a pain pump. Though he wanted to be at the art table, he did not LIKE the talking and noise around the table. So as you can see he put cups over his ears. About half way into Mattie's treatment year, his sensitivity to sound developed, so much so, that he did not even want to hear Peter and me talking to each other. It was at that point, we resorted to text messaging. Which maybe why even today, I much prefer typing than talking. A sad commentary, but anyone who thinks childhood cancer doesn't impact the family psychosocially, would be VERY wrong. 

Quote of the day: I won’t be reasonable. I don’t want to take what you call ‘a sensible view’. It won’t help me, and it only makes it harder. I don’t believe you’ve got any heart. ~ Louisa May Alcott

I get into bed at night and literally I am so worn out that I fall asleep and wake up the next morning in the same upright position. Though I wanted to try to sleep later today, my brain turned on at 7am, and there was no going back to sleep. When I opened my bedroom door to go feed the cat, I saw my mom was up and so was my dad. I went into my dad's bathroom to see what was going on. My mom doesn't have the constitution to deal with body fluids and messes. So she stands outside the bathroom door, which doesn't help my dad what so ever. When I moved myself into the bathroom, what I saw was overwhelming at 7am. My dad's walker was five feet away from where he was, by the toilet. That is beyond dangerous and I asked my mom how she could let him walk to the toilet without his walker. Of course I got NO answer! When I made it to the toilet, I found my dad standing there, in a puddle of urine, without a depends on, and his hand in the toilet. I truthfully did not handle it well. Frankly I LOST IT! I wasn't sure what to deal with first, the urine, his hand in the toilet, his coughing at me, or you name it! So this was how my morning started. 

Today was day 3 of COVID. Being in the house all day long, is a special kind of torture. I would say that today my dad was fever free. I thought he was without a fever yesterday, but by last evening, he spiked one again. He is still coughing but it isn't like it was yesterday. He is also more alert and appears to have slightly more energy. Which I view as a positive sign, and I would say Paxlovid is helping. Having him keep a mask on is also a special kind of torture, because one he keeps pulling it off and two, he has no recollection that he has COVID. My goal is to try to keep my mom from catching what he has, because when she gets sick, her immune system isn't as strong as my dad's. What would take one person a few days to a week to heal, will take my mom a month or more. 

This afternoon, my cousin called and chatted with my mom. I literally took that time to sit outside on the porch with Indie. It was a forced break, which I appreciated. 

This evening, I got a call from a friend who was having career issues and wanted to chat. Literally my world has been so focused on my marriage, being pushed into a divorce, caregiving, bills, and managing a house, that I sometimes forget that I actually am so much more.... I have great listening skills, can process what is being said, I am empathetic, can provide support and I can also help a person feel empowered. Tonight's call reminded me that this is WHO I AM, and will always be at the core. 

Friday, September 13, 2024

Friday, September 13, 2024

Tonight's picture was taken in August of 2009. By that point in time, we knew that Mattie's condition was terminal. Mattie was in the child life playroom and surrounded by lots of people. They were all there to try to distract and engage him. You can see his art therapists kneeling down on either side of him, and the woman in black was Liz. Liz was a poet and came in many times throughout Mattie's journey and worked with the children on creating compositions. She captured many of Mattie's quips and reflections while sitting there. As I told these women countless times..... all the items Mattie created with them over 14 months became part of his legacy.

Quote of the day: The train blows, just when I was forgetting. Forgetting that I am here alone. And I wonder if those cars got held up by its passing, just as I have yours. ~ Kellie Elmore

I am so thankful that the weather is warm! Because I have the windows open and I am trying to air out the house. I am working hard on the spread of germs, but it is an uphill battle, especially when I have a patient who constantly takes off his mask. Especially while coughing. The beauty of dementia! 

For the most part, my dad has spent the day resting in his recliner. He has been able to eat light meals, but it exhausted, has a cough, and this evening his fever has returned. Of course, I am trying to balance his care and keeping my mom healthy! 

It is hard psychologically to be tied down to the house. Not to be able to freely get about! It only adds to my sadness and angst. When someone in my home gets sick, I typically make a big batch of homemade chicken soup. I started the process this morning and this is the final product. It keeps me moving, which is necessary, because sitting still only causes me to feel awful, dwell on my miserable existence, and analyze what has happened to my life. 

Thursday, September 12, 2024

Thursday, September 12, 2024

Tonight's picture was taken on August 22, 2009. Even though Mattie's cancer diagnosis was terminal, and he literally died 16 days after this photo was taken, he was still excited over the fact that he lost a tooth. You will see the tooth was in his fairy box. We bought that box together on one of our Florida trips. It was our tradition.... Mattie would lose a tooth, he'd put it in the box, and then leave the box with a note for the tooth fairy by the side of his bed. Yes Mattie always had something to say to the fairy and a special request. Mattie did not want money! He wanted things like a pasta necklace (yes you read that correctly), or a hot wheel car! 

Quote of the day: Back then, in those first days, I was so alone that every day was like eating my own heart. ~ Junot Diaz

Just when I think it can't get worse.... It does!!! I got up at 5am today because my electrician was coming over to help me with lights. Bob is an early riser, and was at my house before 8am. Before Bob came, I wanted to make sure that breakfast was prepped and I could do my morning clean up routine. Once Bob arrived, we went from one light issue to the next. Of course nothing I deal with is ever easy, and therefore the best way to fix our problem is to replace many of the outdoor lights with low voltage LEDs. So he showed me some sites to purchase these lights when I am ready, and then he will come back and install them. Don't you know it though, after Bob left, our outdoor fountain stopped working as did three of our transformers that regulate the outdoor lights. Fortunately in Bob's tutorial today, he showed me that the electrical panels in the garage supply the electricity to these transformers. I examined the panel, realized a switch was tripped and I flipped it back on and voila.... the fountain and everything worked. Honestly! If that was the extent of my day, that would have been enough. But it wasn't!

My dad had his physical therapy session at home. While in his session, I noticed he had a dry cough. I made note of it, but kept on working. After his session was over, my mom insisted she wanted me to take out money from one of her bank accounts. I am juggling a financial nightmare here, so I regulate everything down to the dollar. When I got to her bank, I tried using her card in the ATM. It wouldn't work. Which lead me inside the bank. The bank was very busy! I finally got to the teller and she alerted me that the card I had was a bank credit card, not the ATM card. Naturally my mom has NO IDEA where her ATM card was, so I asked a banker today to help me getting such a card. This may not sound like a big deal, but it was one more thing that pushed my apple cart over the edge today. 

When I got home, my goal was to take my parents out for lunch, because I had a therapy appointment later in the day. As I was helping my dad up from his chair, he was HOT to the touch. I couldn't tell if that was from his heating blanket or not, so I grabbed the thermometer. He was running an 101 fever! I got out our in home COVID tests, because I wanted to rule this issue out. His memory care center sent a note out two days ago about a COVID outbreak at the center. 

The in home test said he did not have COVID. His doctor was concerned that he could have pneumonia or have a urinary tract infection from the ureter stents that he still has from his last surgery on August 21. So what did that mean? It meant a trip to the ER. My dad did not want to go, but that wasn't an option. 

We waited for two hours in the ER waiting room, until we were finally called back. While waiting though, they did blood work and a COVID test. Thankfully I can check test results in real time through the portal on my phone. Any case, by the time we were called back to an ER room, I could see that my dad tested positive for COVID. I told the doctor I did not know how that was possible. He told me the in home kits are antigen tests and the test hospitals use are PCR tests, which are far more accurate. It is ironic, we survived the entire pandemic without getting COVID, which was a miracle as I traveled cross country every other month to visit my parents! It took the memory care center to do us in. 

It was a roller coaster ride at the hospital. The doctor was convinced that my dad's symptoms were NOT COVID related, that instead he had to have an infection too! I wasn't going to argue with him, given that my dad has a track record for urinary tract infections, and given that he has ureter stents still in place, there was a high probability that the stents could have contributed to the issue. Any case, we complied with all testing. They gave my dad a chest x-ray, an abdomen and pelvis CT scan and a urine analysis. On an aside, while transferring my dad from his bed to the CT scanning table, they injured his back. Keep that in mind, because even without a back pain issue, it is hard for me to get my dad up and mobile. 

Throughout all of this, my dad's heart rate was running high and his blood pressure was low! When all results came back, I could see he did have a urinary tract infection, but according to them it wasn't remarkable enough to merit treatment. They told me that they would expect a slight infection with ureter stents! Sorry, I wasn't happy with that answer. The nurse led me to believe that given the late hour, my dad would be admitted. However, the ER doctor came in minutes later and said my dad was instead going to be discharged. Do these two people talk to each other??? Have we heard of coordinated care??? The system sucks, it is ruled and regulated by insurance, and don't get me started about their lack of care and concern for the family caregiver. 

The doctor prescribed Paxlovid to ease the symptoms of COVID. He mentioned that this drug could poorly interact with some of his current meds. The doctor promised he would come back with a list of meds that my dad should stop taking while on this drug. Not only did he not do that, but he sent the script to my pharmacy which closes at 8pm. I had the nurse track the doctor back down and first get answers for me about which meds my dad can't take while on Paxlovid and second to send the script to my 24 hour pharmacy I used to use when I lived in the city. Now why did I have to tell him this? Shouldn't he be asking those questions! I am amazed that doctors discharge older patients without asking the important questions.... is there someone to pick up your med and provide care for you? Not only don't they ask, I am beginning to think they don't care. The system has blunted out whatever compassion they had before entering medical school. Needless to say, I left the hospital very upset, as I could barely get my dad out of the wheelchair and into the car. His back hurt that much and he is depleted from having a high fever.  

After six hours in the ER, we finally got home at 9:30pm. My day did not stop there. NOPE! I had to fed Indie, and I made soup for all three of us, since we hadn't eaten since breakfast time. I got my add up to bed around 10:30pm, and set up a large aero mattress for my mom, clear across the room from my dad. She insists on being in the same room as him, and frankly given his mental state, he does need supervision. But what does all of this evoke in me??????????????? The simple fact that I miss my husband. I miss the person who was there in the past, caring about my well-being and welfare. Who would offer help at a moment's notice. Now I balance the impossible alone and what you clearly see spending any time in a health care setting, is that you need a spouse present to help advocate for you. So in addition to being exhausted, and heart broken, I worry about my future, because at the end of the day the help one needs when sick typically comes from one's spouse. I saw lots of examples of spouses supporting each other in the ER waiting room! A VERY sobering day indeed. 

Wednesday, September 11, 2024

Wednesday, September 11, 2024

Tonight's picture was taken on August 8, 2009. It is hard to believe that a month later, Mattie died. While home from the hospital, Mattie requested that Peter put up his big camping tent in the living room. We inflated two aero mattresses in the tent, and this was where Mattie and I slept that week. What you can't see, was the IV pole right outside the tent on the left hand side, or the pain pump attached to Mattie. Given all of Mattie's needs and physical limitations, there was no way he could sleep without supervision. I will never forget that moment in time, my sheer exhaustion and lack of control. My current situation reminds me a lot of this time (but of course in different ways). Mattie always wanted to go on a camping trip. He was so excited to be joining his school's cub scout troop, and Peter was going to be one of the leaders. Unfortunately, Mattie was diagnosed with cancer and he never made it to first grade, cub scouts, and so many other things. None of this was meant to be. 

Quote of the day: She was gone, definitely, finally gone. Until now he had half unconsciously cherished the hope deep in his heart that some day she would need him and send for him. ~ F. Scott Fitzgerald

This morning, I had to take my parents to appointments with their rehab medicine doctor. The last time I interfaced with this doctor, my dad was in the hospital, recovering from an emergency admission due to kidney stones blocking both ureters. My dad was in the hospital for four days in the beginning of August. When they wanted to discharge him, the issue became what to do with him? I wanted him to go to the hospital's acute rehab and the hospital wanted him to go to a nursing home for rehabilitation. I fought this decision very hard, but lost. So against the hospital's recommendation, I brought my dad home. 

When the doctor walked into the exam room today, he knew he was going to be dealing with me. He understood from our last interaction that I was NOT HAPPY with his decision. I literally gave it to him and told him I did not know how he  could assess what was best for my dad without even getting him out of his hospital bed to see his physical capabilities. He started to pipe in and I stopped him. I then told him that both he and my dad are just lucky that I am alive and could take my dad home and manage his care. Because in a nursing home, he would have floundered and most likely would have suffered an early death. The doctor couldn't argue with me. 

Once we got passed those issues, he examined my parents. He agreed that the black and blue on my dad's lower spine was most likely received by bumping into a wall. However, he was happy with how well it was healing, that I was giving him a heating pad, Tylenol, and by day I put an icy hot patch on it. He has prescribed both of my parents in home physical therapy, which helps. As they can do this for a few months, take a pause, and then can be re-certified for more session a few months later. Then he turned his attention to my mom. My mom has significant issues with balance, posture, and neck and leg pain. He finally convinced her to try a shot of saline, cortisone, and lidocaine in her neck muscles today. While holding her hands, she did three shots. So we shall see how this goes, but she is already reporting less pain!

Why am I posting Mattie's baby nursery? Because I can't think of 9/11 without being pregnant. I literally found out weeks prior that I was pregnant, and on 9/11/2001, I was supposed to have my first appointment with an obstetrician.

We were living in Washington, DC. Peter was at work in Northern Virginia. I happened to have the TV on and what I saw unfolding at Twin Towers was shocking, devastating, changed our world forever, and the lives of all those impacted by loss will never be the same. When I say we must always remember, to me they aren't just words. As I know full well what it takes to nurture the memory of a person who has died. The hole left behind is permanent and never gets filled. 

Of course living in the Nation's capital in 2001, I was concerned about safety. I was worried about how Peter was going to get home, and what we should do. I remember Peter recalling how eerie it was to be driving into the city on 9/11. All the other cars were desperately leaving the city, he was one of the few returning back over the bridge. Of course he could see the smoke from the Pentagon in the distance. It was a feeling of great panic, uncertainty, and at the same time I was scared being pregnant through all of this. At the end of the day, I always felt better knowing that I had Peter. That Peter was there for me, we were there for each other. 

This evening, my neighbor invited me over to chat and catch up. She gave me this beautiful lemon cake, as most people know sugar is my drug of choice! 

I can't believe it is September 2024. It is hard to grapple with the fact that Peter left our house in September of 2023, and hasn't been back since. This whole year has been a blur, with my greatest hope that he would re-evaluate and reflect on our life together and that we would find a way forward. To me, love and loyalty are just that.... they aren't fleeting, they are a lifelong commitment. Some days I am so confused, as I can't believe I am leading a single life, without my husband. A man who has been my everything, and who I devoted my life to him, Mattie, and our families. It is hard to accept that I do not matter to him, that my well-being and welfare are unimportant, and that our memories are meaningless. 

While visiting my neighbor, she was talking about planning vacations with her husband. I admit that sent me for a tailspin, because I had the same hopes when Peter retired, when caregiving wasn't part of my daily routine, that we would have many adventures together and our bond would always be there to nurture and preserve Mattie's memory.

Tuesday, September 10, 2024

Tuesday, September 10, 2024 -- Mattie died 779 weeks ago today. 

Tonight's picture was taken in August of 2009. When this photo was taken, Mattie was only weeks away from dying. Mattie always wanted a ride-on vehicle and my parents made this happen for him! Amazing what kinds of things you will do when your child is dying! Whatever guided my decisions when Mattie was healthy, went out the window. Once Speedy Red was assembled, I was concerned Mattie wouldn't know how to drive this car! So you can see, I squeezed myself into this tiny car, and was Mattie's passenger, providing input and direction. But the beauty of Mattie was that he figured out how to drive right away. He took to it like a duck to water. Our commons area was the best place to drive Speedy Red, as it was completely fenced in and away from the street. Mattie absolutely LOVED driving and I will never forget these memories. My best moments in life were with him!

Quote of the day: What is stronger than the human heart which shatters over and over and still lives. ~ Rupi Kaur

Tonight I am in a state! So much so, that after I served and cleaned up dinner, I went outside and walked a mile in circles IN THE DARK. I had to walk because I thought I was going to have a heart attack. My heart was pounding and my chest hurt. I am stressed out on every level. Dealing with bills, the house, my dad and his many health issues, my mom, the cat vomiting all over the place, cleaning up after my dad and intense heartache...... IT IS TOO MUCH!

If that wasn't enough, I have been enduring a year long house renovation next door to me. For the most part, I have tried to take a deep breath and be understanding. But then this GIGANTIC garage and second floor living addition was being erected. I went from having a very private backyard, where I was surrounded by trees to this!

If it gets any closer, it will be in my backyard. I am so frustrated as there is NOTHING I can do about this. I am just supposed to smile and be happy, THANK YOU TO THE HOA AND THE COUNTY!

My all season room used to be a beautiful space, surrounded by greenery. NOT anymore! Right now this behemoth is green, but just wait until it is painted white like the house. Every aspect of my life is sheer chaos, in which I have NO CONTROL over anything. 

Monday, September 9, 2024

Monday, September 9, 2024

Tonight's picture was taken in August of 2009. That evening, Mattie went to the mall (after hours.... when stores were closed) to meet with expert Lego master builders. Mattie had the store all to himself. It was a wish that Mattie's child life specialist arranged. Since Mattie was a huge Lego fan, and we literally constructed all the Lego kits in the store that year, the Lego builder masters worked with him on a Mattie inspired project. Mattie chose to build a yellow NYC taxi. Mattie visited NYC twice while undergoing experimental treatment and the yellow taxi caught his attention. To this day, I have Mattie's yellow Lego taxi in my office. 

Quote of the day: I stand in front of the mirror and study my face.…It is the face of a sad, lonely girl something bad has happened to. I wonder if my face will ever look the same again, or if I’ll always see it in my reflection. ~ Jennifer Niven

Yesterday, on the 15th anniversary of Mattie's death, I received a message from an incredible professional I have had the opportunity to work with since 2011. I remember meeting Lori for the first time, it was about a year after Mattie died. At that time, so many childhood cancer advocates were talking about the medicine/research, and we were talking about the social and emotional consequences of cancer. It almost felt like we were talking a different language from other advocates and researchers. Which is why, when I met Lori, I immediately clicked with her. We understood each other and we talked the same language! We have been on a path together....... creating, publishing, and now implementing the Psychosocial Standards of Care. 

Lori stated, "Everything you have done in Mattie's honor and memory has changed practice and means so much to the pediatric hematology/oncology community." Lori went to India last week and was at a taskforce meeting with professionals who are inspired by our Psychosocial Standards and want to apply them to  develop their own guidelines. 

This was Lori's message on Linked In yesterday. I truly appreciate hearing about our work through Lori's lens, especially since I am in a low place emotionally. The Standards are part of Mattie's legacy and as I always say, Mattie's suffering has to have meaning. The meaning, or our quest for the last 15 years, is to make sure that psychosocial care is part of comprehensive cancer care. Every child and family deserves optimal support! Not just when in crisis, but throughout the cancer journey. 

Last night, I noticed that my dad had a black and blue mark on his lower spine. This explains why he has been complaining of back pain and is moving VERY gingerly. My dad is a physical challenge on a good day, but now with a back ache, all I can say is WOW! I literally have to put my arm under him to help lift him up, which isn't easy as he weighs 185 pounds. The problem is I do not know how he injured himself and frankly NEITHER DOES HE! The next issue is he can't take Advil, because he is undergoing another kidney stone procedure on September 18, and this is one of the meds they want him to stop taking ten days before the lithotripsy and ureteroscopy. Honestly Tylenol isn't cutting it. He just so happens to have a rehab medicine appointment on Wednesday, and I am hoping this doctor can help us. 

This morning was a show. While dropping my dad off at his memory care program, I was getting multiple calls. One was about my car, which has been getting serviced since last Wednesday. I told them they had to figure out what was going on because I did not feel safe driving the car. The team did an excellent job and my car was returned today. All I can say is the extended warranty for service on the car has been worth it, especially since my car is so OLD. I then went to my doctor's appointment, which wasn't far from the house. I see this doctor once a year to check my skin for any signs of cancer. When she saw me, she asked how was my summer and did I go on any trips?! An innocent question and one that makes small talk. I spared her what is going on in my life, because it wasn't her business. But I did tell her with caregiving around the clock, that I do not get a chance to get away. She understood and mentioned how lucky my parents are to have me. Perhaps!

I have been separated for almost a year now. Have things gotten any easier? NO! In fact, I would say each day I wait for the next shoe to drop! The past two weeks, I have been bombarded with emails, letters, and phone calls. Many of them are fraudulent in nature. Which is disconcerting. Now whenever I get a correspondence, I hate to say it, but I view it as fraudulent first, until I prove that it is legitimate. I waste more time digging, investigating, and verifying. It is exhausting. If this was the only thing I did all day, that would be one thing, but I am juggling a circus show, literally and figuratively. Don't get me started with EZ Pass either. I have had a defective EZ Pass for several years now. I finally had it today and decided to buy a new one, register it, and then figure out how to return the old one to the service center. 

Given all that I do each day, I wonder how I could possibly do anything else. There just isn't a moment in the day even to breathe. It is stressful and frustrating. If I was balancing all of this with my husband, that would be hard enough, but we would be doing it together. Sharing the load and supporting one another, to me is what life is all about. Now doing all of this alone is plain and simply heartbreaking. 

Sunday, September 8, 2024

Sunday, September 8, 2024 -- the 15th anniversary of Mattie's death. 

Tonight's picture was taken in August of 2009. By this time we knew that Mattie's cancer was terminal. In fact he was only alive a few weeks after this photo was taken. Mattie always wanted a ride-on vehicle. When he was well, there was no way we felt such a gadget was needed. However, when your child is dying and this is what he wants, you jump at the chance to get it. Mattie named this ride-on vehicle, Speedy Red. When Mattie sat in the driver's seat, I was nervous, and therefore squeezed myself into this car and sat in the passenger seat. But here is the funny thing.... Mattie was a natural. He just understood the mechanics of driving and this car gave him the freedom to zoom around in our commons area. I will never forget how Speedy Red brought moments of happiness during times of great sadness and pain. 

Quote of the day: There is an endearing tenderness in the love of a mother to a son that transcends all other affections of the heart. ~ Washington Irving

If I had to describe how I felt all day today, I would say I ranged from miserable to having great anxiety. My life is in shambles and the 15th anniversary of Mattie's death has compounded the sadness. Nothing is worse than trying to acknowledge this day without my spouse's presence. For the last 14 years, Peter and I shared this loss and this devastation together. I just can't believe some days that this is my life. Literally I wake up and go to bed in deep confusion. 

In the midst of this great sadness, my dad kept wishing Mattie a happy birthday today, and my mom is equally a bundle. Her walking and stability are worse than ever and she has no insight into her condition and issues. Yet when I am out with them, I am balancing my dad and his walker, my mom is holding my arm, and I am carrying tote bags and blankets for my mom. I feel like a sherpa. Most days, I tolerate it, but some days I would like the freedom to just be. To figure out how I am feeling, without running from one task or crisis to the other. When I say my existence is miserable, it is a very accurate statement. I live with no one who looks out for me, or who can step up and do a chore, a task, or handle an issue. It is daunting, disillusioning, frustrating, and depressing. Some days I really have to wonder what on earth is God thinking?!

The feeling of anxiety was so intense today, that I literally couldn't sit still. I took my parents out to brunch, but I wanted to jump out of my skin. My mom is glued to her phone (NO IDEA what is so important on that phone), and my dad eats too fast, needed several bathroom trips, and when not eating or in the bathroom, had his head down at the table. Truly the whole sight is depressing and neither of them can understand that I NEED SUPPORT and kindness. 

To manage all these feelings, when I got back home and got my dad situated, I went outside with the hedge trimmer. That thing has been my gadget of choice. I have gone at so many scrubs over the past several weeks, I can't tell you. Some people need to punch things to vent, I just need to pull weeds and hedge trim. It doesn't take away any of the pain, but it does get out frustration and anxiety. 

I got a message from my friend and colleague today. She reminded me of this Remember Mattie video that I created back in 2009, for Mattie's memory of life celebration. Thank you Mary Ann for reminding me of this video. The song gets me every time. You won't find this song anywhere! It was recorded by a friend of Mattie's preschool, and as soon as I was sent it after Mattie died, I knew it would make the perfect music for a video. Check out this four minute video of my Mattie's life. He was taken way too soon, and it is devastating to think that he has been gone twice as long as he has been alive. Today, tomorrow, forever.... I remember Mattie.