Tuesday, February 23, 2016

Tuesday, February 23, 2016 --- Mattie died 336 weeks ago today.

Tonight's picture was taken in February of 2006. This was another classic Mattie photo.... building with tinker toys. That day Mattie and Peter built this wonderful tower and they were very proud to show it off!




Quote of the day: Ancient Egyptians believed that upon death they would be asked two questions and their answers would determine whether they could continue their journey in the afterlife. The first question was,’Did you bring joy?’ The second was, ‘Did you find joy?’~ Leo Buscaglia


I feel like I had a rough day. Awaiting MRI results for the spine and brain. The spine results came in and I don't understand them and then my doctor didn't post the brain results. Well that made me even more anxious. Needless to say, the results are posted and I don't understand either of them or the next steps. So that is how I went into teaching a class at the George Washington University. By the time I got to the University my head was spinning and each limb was shaking. How I pulled it together to teach for two hours is beyond me. 

The lecture I gave was about the impact on childhood cancer on a family and how bereavement affects the lives of parents forever. Before talking to a class I always ask them to raise their hands if they have a personal experience with cancer, knew a child with cancer, and are parents themselves. This class actually had one childhood cancer survivor in it, but no parents. It is hard to talk to people who are not parents because they do not get the true love and bond between a parent and child. They may get it theoretically or may reflect on their connection with their own parents, but it just isn't the same. 

I remember when I was in graduate school, pre-Mattie, and a guest lecturer came in to discuss grief and loss and focused upon the death of a child. She mentioned that this is the hardest form of grief to manage and cope with. At the time I processed that but did not take this information to heart, NOT like I do now. So I told the class tonight that one day when they have their own children or are involved in caring for a child, they will look back at tonight's lecture and have a deeper understanding for what I was talking about. 

Typically I come back from these lectures energized, but that wasn't what happened tonight. When I got home I was worn out and Peter wasn't back from work yet. So overall, I felt in a quandary and not sure what to do. I literally was going to walk back out of our home. I am not sure why, but between how I am feeling and two hours of talking and reliving Mattie's cancer and the impact it has on families did me in. 

Monday, February 22, 2016

Monday, February 22, 2016

Tonight's picture was taken in February of 2006. Mattie was pictured with a flower pot that his preschool class made, with their thumb prints. We were proud of this pot and had it on display for years. I am not sure what I like most here.... the pansies or Mattie's beautiful smile. 

Quote of the day: Unable are the loved to die. For love is immortality. ~ Emily Dickinson


I went for my afternoon walk today and along my journey I ran into our friend Maria and another woman, Detra, who we are fond of and manages the front deck in our complex. Maria and Detra shared a Mattie memory with me today. I frankly forgot about Mattie's visits around our complex, until they reminded me. Mattie used to love going down to our complex's front desk to greet the ladies who work there. But one of Mattie's motivations was to see if any packages and boxes were delivered. Because as he knew he used to get many care packages in the mail and was always eager to see what surprises awaited him. It is ironic, I write about Mattie each day and reflect on him, and yet I do not remember everything. Which is why when people share a side of Mattie that I may have forgotten, or their personal experiences with him, it means a lot to me. 

It was more like a spring like day today rather than winter! It was glorious and this is what the Potomac River looked like with the Kennedy Center and Roosevelt Bridge in the background. 

Crew teams were out on the water and to me that is almost like the first sign of spring! The water doesn't have ice on it and people were out and walking about. Last week as I walked by the River, there wasn't a soul around. It was too frigid. 

The sun setting over the Potomac. 

Sunday, February 21, 2016

Sunday, February 21, 2016

Tonight's picture was taken in February of 2006. Mattie was three years old and doing another activity he loved... playing with play-doh. If you look carefully, you can see that Mattie's car carrier was transporting the clay! Mattie stuffed clay into his cars as well. I remember those days so well, and I also recall what a nightmare it was picking up bits and pieces of play-doh everywhere. Yet because this was creative play and Mattie enjoyed it so, I dealt with the consequences. After all how could you resist that smile?!



Quote of the day: Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. ~  Lao Tzu



Despite not feeling great, I know I committed to guest lecture at the George Washington University on Tuesday for two hours. I am scheduled to present about childhood cancer and loss. Of course there are SO MANY aspects of loss associated with cancer, for both the child and the family. So keeping this presentation focused and to two hours requires thought. 

When I was asked a few years ago to speak at the University, I was given an hour. This Tuesday, I have been given the full class period, two hours. So it wasn't as if I could take an old presentation and recycle it. I had to update and expand what I did a few years ago. Typically that wouldn't be so much of a problem, but given my state now, doing anything is like climbing a mountain. But today I finished the power point slides and was able to print out handouts. 

Peter and I ran some chores today, but I literally am not myself. I have very little energy, get wiped out easily, and am shaky and light headed. It is the shakiness and light headedness that I find most troubling and it makes me feel unstable. I am happy I have been aggressive this week about getting answers and insights into my symptoms, and I hope to have them next week. 

Saturday, February 20, 2016

Saturday, February 20, 2016

Tonight's picture was taken in February of 2004. That weekend we took Mattie to the National Museum of Natural History. Peter caught both of us looking at a huge African Elephant in the Rotunda. As you can see Mattie was absorbed and intrigued!





Quote of the day: The question “When does graffiti become art?” is meaningless. Graffiti is always vandalism. By definition it is committed without permission on another person's property, in an adolescent display of entitlement. Whether particular viewers find any given piece of graffiti artistically compelling is irrelevant. Graffiti’s most salient characteristic is that it is a crime. ~ Heather MacDonald (who wrote an article about this in the NY Times)

Peter and I went on a three mile walk today before I headed to the hospital for an MRI. We walked through Georgetown and found this wonderful perch to take a photo of Peter with Roslyn, VA in the background. 

Along our walk, I couldn't get over the graffiti. Some people aren't disturbed by this sight, but I on the other hand am greatly bothered by it. I do not find it artistic, but absolutely disgusting and respectful to us as a society. Especially when it defaces public places and monuments. The overlook we walked to today, was actually the remnants of an old bridge that connected at one time Georgetown to Roslyn. The amount of paint and graffiti covering this space was overwhelming!

Along our walk, we came across this wonderful Great Blue Heron walking in the canals of Georgetown. 

Today seemed to be a day of ugliness. Many walls around us seem to be defaced with graffiti. This one is right outside the Department of State. Why they do not do anything about this is beyond me. But Peter and I take photos of every graffiti nightmare we find and send it to the Mayor's office to have it addressed. 

Look at this wall outside of the Kennedy Center! Absolutely hateful!

Another wall outside the Department of State, along with tents filled with homeless people. The graffiti and homeless issues have NOT improved in DC over the years, but have gotten exponentially worse. 

On our drive home from the hospital I immediately spotted Mattie Moon in the sky!

Though the MRI was an hour long, the tech who worked with me was absolutely delightful. He was a retired military man, and was respectful, professional, kind, and helpful to both Peter and me. Anyone who says kindness can't help make a medical procedure better is absolutely WRONG. In fact, I would say it helps in ways that are too measurable to quantify.

Friday, February 19, 2016

Friday, February 19, 2016

Tonight's picture was taken in February of 2004. That weekend we took Mattie to the National Aquarium. Which isn't any thing to write home about, but it is small and very doable with a small child. As you can see from this photo, Mattie practically jumped out of Peter's arms to get a closer look at the fish!



Quote of the day: The good physician treats the disease; the great physician treats the patient who has the disease. ~ William Osler

Yesterday when I went to see my neurologist he suggested that I meet with my internist so she could evaluate my symptoms from a holistic standpoint. Because apparently there are other things like diseases and viruses that could potentially explain my symptoms. Between the two of them, they are trying to rule things out. I am all for it and for finding answers. Peter took me to my appointment this morning because with dizziness and light headedness, I do not feel comfortable driving. 

My doctor took four vials of blood today, and if I wasn't woozy to begin with, I left feeling even worse. Tomorrow I head for an MRI. However, in the midst of all of this, I have been asked to teach a class at the George Washington University next week and the week after that I have been asked to sit on a dissertation committee defense at the University. The person defending her dissertation is investigating the impact of childhood cancer on parent relationships. So I have been asked to be a subject matter reader. Needless to say, I have got to get it together because the way I have felt this month it has been impossible to work and accomplish anything. 

Thursday, February 18, 2016

Thursday, February 18, 2016

Tonight's picture was taken in February of 2009. Mattie was in the child life playroom at the hospital and had just finished creating a very decorative airplane hanger out of a card board box. Mattie's art therapists and child life specialist knew how much Mattie loved boxes, so literally when deliveries came in, they saved boxes for Mattie. You would be amazed the various ways he could transform a box. He made all sorts of things like a haunted house and an apartment complex (with an elevator that worked on a pulley). 


Quote of the day: The clearest way into the Universe is through a forest wilderness. ~  John Muir


I went to see my neurologist today about all the issues I have been dealing with for weeks now. My symptoms keep evolving and more just seem to pop up, so he is going to do extensive testing on me. I am all for it to try to explain what I am dealing with. 

My symptoms make it impossible to work, concentrate, and truly function on a day to day basis. So today, all I could do was rest and by the afternoon, I dragged myself outside to walk. 

Along my walk I saw some lovely sights, despite how cold it was outside. Fortunately it was a beautiful sunny day. The flags are at half mass at the Kennedy Center in honor of  Chief Justice Scalia's passing. I thought the composition against the blue sky was noteworthy. 

As I walked along the Potomac River, I passed several geese. They were honking away and seemed interested in me as I walked by. One goose actually followed me and walked beside me. 

Hiding out on a rock in the water, by the shrubs, was this wonderful Great Blue
Heron.

When I got home, perched on our bird feeders was this huge Cooper's Hawk. I am NOT in love with the hawks who try to eat our sparrows. But the sparrows are quite clever and seem to know how to escape from being captured. 

Wednesday, February 17, 2016

Wednesday, February 17, 2016

Tonight's picture was taken in April of 2006. We took Mattie to his favorite restaurant to celebrate Easter. I will never forget that day because when this big bunny approached us Mattie was ready to jump out of his chair. I related, because when I was Mattie's age I hid from all these huge dress-up characters. But I explained to Mattie that this bunny wasn't going to hurt him and to just say hello and wish him a Happy Easter. Mattie decided to try it and he had a wonderful interaction with the bunny. I posted this photo because last night, Peter and I held the Foundation's volunteer dinner in this very room. 


Quote of the day: Memory was a curse, yes, he thought, but it was also the greatest gift. Because if you lost memory you lost everything. ~ Anne Rice 

Last night Peter and I held our annual Volunteer dinner and Walk planning meeting. Before everyone arrived, Peter snapped a photo of the table. It looked very magical to me. 

It is challenging to get the whole team together for a dinner, but 10 of our volunteers came and we had a good time brainstorming this year's event. We even had Becca join us. Becca is the executive chef at Clyde's at Tyson's Corner. However, prior to relocating there, she used to be the executive chef at Clyde's at the Mark Center (which is where this dinner was hosted). Though Becca did not know Mattie, she cooked for him and my family for many years. In fact, it was the general manager of this Clyde's who introduced Becca to us and since that point, Becca has been donating food, cooking it, and giving us all the proceeds from food sales at all of our Walks. An amazing lady!

PICTURED:

Sitting (left to right): Heidi, Denise, Vicki, and Becca

Standing (left to right): Peter, Ann, Dawnee, Dave, Mary, Katie, Peggy, and Jane

Tuesday, February 16, 2016

Tuesday, February 16, 2016 --- Mattie died 335 weeks ago today.

Tonight's picture was taken in February of 2008. This was five months before Mattie was diagnosed with cancer. That weekend we took Mattie to Roosevelt Island. This was a space we went to often with Mattie. He loved walking through the woods, climbing on rocks, and also collecting branches. As you can see from this photo, Mattie was holding a huge stick he found on the Island in his right hand. Whatever sticks Mattie found, always came home with us. Mattie had a large stick collection in our commons area. But over all Mattie liked to collect things in nature... stones, acorns, pine cones, sticks, and shells. 


Quote of the day: If you are not your own doctor, you are a fool. ~ Hippocrates

Hippocrates was ABSOLUTELY correct. If you are not your own doctor and advocate, then you surely will be left in a quandary in our health care system. Since November, I have been dealing with costochondritis, which is inflammation of the ribs. It is very painful and it limits your desire to move, breathe, bend, etc. I developed this condition after having a mass removed from my breast. When I saw my doctor about this, I was put on an anti-inflammatory drug for two weeks. This drug helped but then the prescription ran out and the pain was still there. So when I went back to the doctor's office, I was given a different script for a long lasting anti-inflammatory called Voltaren. Initially when I started taking it, it upset my stomach, but then that feeling passed. Yet after the second week on the drug, I decided to call the doctor back because I was developing other symptoms such a muscle twitching in my arms and legs and compounded headaches (from the ones I already have each day). At which point my doctor's office took me off of Voltaren and re-prescribed the original drug I had been taking. 

Needless to say, I was so concerned about the symptoms, that I decided not to take any more anti-inflammatory medications. What my doctor did not tell me is that one shouldn't just stop taking Voltaren, but instead taper off of it. Since a large percentage of people get withdrawal symptoms. Mind you when I consulted my doctor's office about the symptoms I was having, they were quite certain it wasn't due to the medication. REALLY? Shocking when the data is out there!

My symptoms have been getting worse over the last two weeks. Everything from muscle twitches, numbness in my legs and hands, headaches, light headedness, dizziness, vomiting, intense anxiety, and being in a mental fog. It has been very difficult to function most days. So I started researching withdrawal symptoms from Voltaren. It is significant enough that there are support groups on-line to help people cope with the withdrawal. So why a doctor's office doesn't know about this is scary.

Several people on-line complain of the same symptoms as me, and also feel like their lives are miserable and are over. This drug seems to do a great job at playing with your emotional stability. In any case, the FDA reports that 100% of people get withdrawal symptoms if on the drug for less than a month. Research seems to show that if you are on the drug long term, then there are no withdrawal symptoms reported after stopping it. In addition, women are more likely to get withdrawal symptoms in comparison to men and my age group is the most likely ones affected. However, the withdrawal symptoms do not seem to go away in days. Some people report months! I can attest to two weeks so far and counting. I am hoping for relief soon because it truly is so debilitating it is hard to function and get anything done.  

I was reading about ways to speed up the withdrawal process and two things were mentioned: 1) hydration and 2) exercise. Because of issues with kidney stones, I have the hydration part covered but today I decided to start a walking routine. 

When I tell you it literally took me hours to get washed and dressed, I am not kidding. But now that I feel like I know what my issue is, I made a point to walk! 

When I started walking it was raining out, but slowly as I continued, it stopped and the sun came out. I walked by the Potomac River, which I find soothing to see and the seagulls
were having a ball. 

I was standing in DC, but the buildings across the way are in Roslyn, VA. Where Peter's office is located. 

The lawns were filled with robins. Which was shocking to me since yesterday it was in the 20s, freezing, and snowing. But today, it was in the 40s and raining, so all the snow was washed away. 

Monday, February 15, 2016

Monday, February 15, 2016

Tonight's picture was taken around Valentine's Day of 2004. This was classic Mattie, very alert, "on," and engaged with us and his environment. I happened to have been sitting behind him on the couch and Peter was snapping the photo. Mattie was most likely reaching out at the camera and of course Peter moved quickly and captured the many fascinations of Mattie. 



Quote of the day: Is it snowing where you are? All the world that I see from my tower is draped in white and the flakes are coming down as big as pop-corns. It's late afternoon - the sun is just setting behind some colder violet hills, and I am up in my window seat using the last light to write to you. ~ Jean Webster

Well I would say they blew the weather forecast today. We were expecting 1-3 inches of snow, and landed up with much more. Being that today is Washington's birthday, and therefore a holiday, everything is running slowly. Plows, people shoveling, and so forth! Mind you it is frigid and I can imagine a lot of this will turn to ice. 

We took a walk today, despite it being in the 20's. This is what the sidewalks looked like.

Right outside a local church in our neighborhood is a t-shirt display. On each t-shirt is a name and that person's age. This is a memorial to some of the people shot and killed in DC, and it is an awareness statement about gun violence. 

The sparrows were out and about today and spent most of the day on our feeders. You can see sparrows on the ground, in the bushes, and on the feeders. 

Can you see all the sparrows in the bush?!

I entitle this our
"snowy birds!"

In the midst of the cold and snow, look who is outside in shorts throwing snowballs!

Caught Peter in action throwing snowballs! If Mattie were alive, he would be right in the mix!

Sunday, February 14, 2016

Sunday, February 14, 2016

Tonight's picture was taken on Valentine's Day of 2009. This was our last Valentine's together. That day, Mattie worked with his art therapists to create many Valentine's Day surprises for me. I was banned from the child life playroom while the creating was going on. However, once Mattie was done, I was invited back and surprised with a paper crown of hearts and a box filled with Valentine's. Mattie's art therapist, Jenny, captured this moment on camera. 

Of course on that, Jenny also snapped by favorite Valentine photo of Mattie and me.




















Quote of the day: Love is our true destiny. We do not find the meaning of life by ourselves alone - we find it with another. ~ Thomas Merton

Valentine's Day can remind us of who is missing in our lives and the terrible void that can never be filled from that loss. It isn't always a day filled with love, roses, and hearts. For parents who lost children to cancer, my thoughts are with you. I know Mattie may not be physically with us, but his spirit and presence remains with us always. This was a photo of Mattie in the hospital for Valentine's day surrounded by cards from his classmates and this giant lollipop. 

We have a very special Christmas Cactus. It blooms at Christmas and ALWAYS on Valentine's day!!!

I had a special See's Candy delivery from my friend, Angie, in Rhode Island. Angie and I met in graduate school at Boston College and we have been friends ever since. Angie remembers me on EVERY Valentine's day because she is aware of a LOVE that will forever be missing in my life.