Saturday, February 25, 2012

Saturday, February 25, 2012

Tonight's picture was taken in July of 2002. Mattie was three months old and featured in his favorite place (well that is when he was outside of my arms).... his car seat! To me, when Mattie was a baby he looked more like Peter, but as he developed, there was no question about who he looked like. He looked just like me and had a similar fiery temperament.


Quote of the day: Happiness comes when we test our skills towards some meaningful purpose. ~ John Stossel

Tonight's quote intrigues me because to some extent, challenges do provide opportunity for great growth, direction, and purpose in our lives. In terms of the Foundation's activities, my greatest test right now is to be able to host a congressional briefing/psychosocial research symposium on March 20. Prior to having Mattie, I had many different experiences coordinating educational trainings and conferences for my field. So thankfully I can pull from those experiences, yet despite some familiarity with professional events, the March 20th event is quite different. It is different because it involves lawmakers, members of the childhood cancer community, as well as professionals from the mental health and medical fields. When one's audience is diverse like this, it becomes a bit more challenging to meet the educational and awareness needs of everyone. Yet myself and the research team are working hard on make sure this is indeed achieved!  

Peter and I took a walk on Roosevelt Island today. Which is a typical weekend activity, because it makes us feel connected to Mattie. It was bitter and frigid out, yet we walked. These windy and grey days do get to me, especially when I am not feeling great to begin with. I continue to have intense headaches and so far have seen no difference in symptoms after the acupuncture session. However, I do go back again on Tuesday and I am hoping over time this treatment helps.

Tonight Peter and I are cooking together, which is always hysterical, since we have a way of tearing apart recipes and tweaking them to fit our own tastes. So in the midst of the cold and how I am feeling, we are trying to find moments of laughter in the day.

Friday, February 24, 2012

Friday, February 24, 2012

Tonight's picture was taken in June of 2002. Mattie was two months old and Peter, I have no doubt, snapped this picture because in our home this was a novel sight. Mattie rarely napped, but if he did, he usually was attached to me. Mattie was a precious bundle and from this picture he also was an angelic one.


Quote of the day: Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tomorrow. ~ Mary Anne Radmacher

Anyone who has had to face a challenge or obstacle, would probably admit that it wasn't possible to manage without courage. Courage is the quiet character that is needed to persevere when things seem at there worst, or with no end in sight. We all have defining moments to reflect upon, and perhaps my greatest one was helping Mattie battle cancer and then to help him die. This battle remains so fresh in my mind, which is why having to deal with my current unknown situation is causing me great angst. Within the last three weeks, there have been many feelings that "roar" within me, but listening to my "quiet voice" is truly hard. 

I spent part of the day working on the Foundation's Symposium. I have assembled a great group of psycho-oncologists to work with, and I am truly enjoying my interaction with the psychologist from Children's Hospital of Philadelphia who I appointed as our scientific chair for the event. Over the past two weeks, I have targeted organizations and individuals to personally invite to the Symposium and I am thrilled so far with the response, and hope that is indicative of the need for such a venue.

At lunch time I met up with my friend Tina. Today was Tina's birthday, and we had a lovely time together over food and conversation. Despite how I am feeling, it made me feel good to make someone else happy. Lunch was the highlight of my day, because after that I came home and returned to being in a mood, with a bad headache, and simply not feeling well. When Peter got home from work, he found me in pajamas and in bed and quickly assessed dinner was not getting made by me. So instead he made it, brought it upstairs, and we watched a movie together while I ate in bed. Not a typical occurrence for me, but then again the last three weeks have been sheer havoc for me.

Thursday, February 23, 2012

Thursday, February 23, 2012

Tonight's picture was taken in June of 2002. Mattie was only two months old. However, when I look at some of Mattie's baby pictures he seemed so contemplative. I remember in kindergarten Mattie got a progress report from his school, and that first semester his art teacher described Mattie in the report as an "old soul." I think Debbie was indeed right, because in many ways Mattie just understood and felt certain things that were beyond his years.


Quote of the day: How far that little candle throws his beams! So shines a good deed in a weary world. ~ William Shakespeare


"So shines a good deed in a weary world!" I love this Shakespeare quote because I do believe it is the small things we do that make a large difference to people. It is ironic that I should reflect on this quote this evening, because recently one of the business school groups we are working with this semester submitted an analysis to us about the Foundation. One of the comments they had for us was that to grow larger we need to conserve our money for bigger and more nationally focused projects. Rather than for example, raise money to support a child life program at one hospital. Though I understand what they are saying in theory, I did push back at this group because I believe making a tangible difference (even if it is at one hospital) in the lives of children and their families battling cancer is imperative and at the end of the day, it is this that makes me feel good about what we are accomplishing. In order to have a national presence, I strongly believe a local one is needed first and also I find through working at Georgetown I continue to be made aware of the needs of families. Which is very grounding and humbling.

Today I had my first acupuncture experience. As I was sitting with the therapist for the first thirty minutes going over all the reasons that brought me to see her, I became overwhelmed with my own list. In fact, at one point I paused and said to her that if I were her, I would be thinking how does someone my age present with all of these health issues? She responded by saying that she was not taken aback but was more in amazement that I am dealing with all of this. I learned today that there is a difference between Chinese versus Japanese acupuncture. The therapist I saw today is trained in Japanese acupuncture techniques.

Japanese acupuncture significantly differs from other styles in its delicacy.
The obvious differences between Japanese and, say, Chinese practice, are that the needles are far finer (using needles barely thicker than a human hair), and that they are inserted often barely deeper than 1 or 2mm, with an absolute minimum of manipulation (thankfully because I have heard from others that this can be painful!). These techniques demand far greater precision and care than normal acupuncture. The therapist worked very hard today at trying to reduce my headache. I had needles in my feet, legs, arms, hands, stomach, neck, face, and head. I must admit that this hour long session did help to relax me, but my head is still pounding. I have had daily headaches for ten years now, so I cannot imagine they will go away quickly, yet I am hoping over time they become more manageable.

I have Foundation work piling up all around me, and yet between my headaches and my latest medical concern, I feel very distracted and on overload. I cannot seem to get relief from the headaches and they are absolutely debilitating in addition to other physical symptoms I am contending with. What weighs on my mind, and will for the next several days, is whether to have a biopsy next week. For those of you reading along and for writing to me, I thank you!

Wednesday, February 22, 2012

Wednesday, February 22, 2012

Tonight's picture was taken in June of 2002. Mattie was very fond of his car seat. This was where he actually slept at night, because he hated lying flat or being in his crib. When he began to eat cereal at four months of age, he accomplished this in his car seat too. I am not sure what we would have done without this car seat, because Mattie was so turned off to his crib, stroller, and swing. In this picture Mattie was only two months old and from my perspective he was smiling and laughing at me. Though I recall his pediatrician insisted that babies at this age can't smile and felt that this gesture was simply "gas." Regardless, from my point of view, Mattie was tracking me and smiling!


Quote of the day: The future will be different if we make the present different. ~ Peter Maurin


Peter and I had our last meeting with the Georgetown University business school class. The Foundation served as the class' community based learning project this semester, and we were invited to class so that each student group could present to us, their "client." Each group developed strategies to help us grow, to enhance our visibly, and to expand our use of technology and social networking. I must say that I came into this class today very tired and extremely stressed out given my past three weeks. Naturally the students are not aware of what I am worried about, nonetheless, my medical concern does cloud every aspect of what I do and how I live my life right now. So I admit to being a little more sensitive and irritable. The Foundation for me is personal and emotional, and in order to work effectively with me on brainstorming the enhancement and development of this organization, I need to feel that others have a certain level of buy in and connection to our story, to Mattie, and the battle children and families face each day when contending with childhood cancer. I did not feel connected to this group of students at all emotionally. They certainly presented some interesting ideas and we look forward to their final reports, but I had to step back and understand the differences in personality, priorities, and the make up of a business graduate student versus my counseling graduate students.

At the end of class, I took a picture of Peter with the entire class!

After this class session today, I journeyed back to the Lombardi Cancer Center to try to get some answers to my latest debate.... can my mass be biopsied? The sad commentary to all of this is that I am treated with kid gloves because I lost Mattie to cancer. I don't mean that doctors are sensitive to my emotional loss (though some are), but I suspect doctors feel I need to be monitored extra closely because of the simple fact that I produced a son who developed an aggressive cancer and died.

Tomorrow I will have my first acupuncture appointment. That may not sound like a big deal, but you need to understand for me to turn to alternative medicine for pain management, means I am desperate and have reached my limit with chronic pain. I am staying open minded about tomorrow and truly hope that help or relief is on the way.

Tuesday, February 21, 2012

Tuesday, February 21, 2012 -- Mattie died 128 weeks ago today.

Tonight's picture was taken in June of 2002. Mattie was two months old and sitting in Peter's arms on our deck. We learned early on that Mattie preferred to be outside, in the fresh air, and not confined by blankets. As today marks the beginning of the 128th week without Mattie in our lives, I find that looking at these baby pictures helps to confirm that we missed nothing. Mattie looked like a happy, typical, and healthy baby.


Quote of the day: I have not failed. I've just found 10,000 ways that won't work. ~ Thomas Edison


In a way I feel as if I relate to Edison's quote tonight. I saw a third oncologist today to consult on my situation. The reason I sought a third opinion, is I wanted this doctor to confirm one of the two opinions that have already been presented to me. However, in true medical fashion, that is NOT what happened at all. Instead, I had a third opinion which I hadn't expected come my way. Keep in mind that each of these three doctors are highly regarded in their field and are associated with major hospitals in my area.

Today's physician was referred to me by Kristen, Mattie's oncologist. This doctor is considered a skilled surgeon and has expertise in robotic surgical technology. I knew this going into the appointment, however, even if I wasn't aware of this, I could tell from his examination that he had skilled hands. He found the mass right away on touch and his examination was less painful than most. This doctor feels he can biopsy this mass and we scheduled this procedure to be done next week. However, what perplexes me is that my other two doctors felt this procedure could not be done given the location of the mass. So why the discrepancy? It isn't like I have two small community hospitals looking at these scans and doing internal exams on me. These are experienced people in their field working at research and teaching hospitals. So after my appointment today, I worked on connecting with my other two doctors and plan to get down to the bottom of this in the next couple of days. But in all reality this is modern medicine today as it relates to a complex issue..... the patient is left to get smart on the problem and make an intelligent decision based on the information presented. Seems to me I should get an honorary medical degree after all of this.

Tomorrow, in the midst of all of this on my mind, Peter and I are going to Georgetown Business School to meet up with the class we are working with this semester. The student groups are presenting their Foundation ideas and are looking to us for our feedback and input. In the state I am in, they are lucky I can even concentrate on what they are saying. 

Monday, February 20, 2012

Monday, February 20, 2012

Tonight's picture was taken in May of 2002. Mattie was a month old and I must have snapped this picture because I was stunned that he was napping. Mattie was NOT a napper at all. His pediatrician used to make me nuts with her pronouncement that babies have to nap and the benefits of napping. Nap time in our home was absolutely ridiculous, because I would go to great lengths to try to get Mattie to sleep. However, if I moved even an inch away from him, he would be up and crying. By the time Mattie turned one, I rationalized with myself that if he wanted to sleep he would, but I no longer was going to be working for 45 minutes to try to get him to nap. Mattie and I found our own rhythm together, one that wasn't covered in any baby book or doctor's office. It maybe hard to really see this from the angle of this picture, but when I saw it today, it reminded me of the beauty of Mattie's nose. Mattie's nostrils formed a heart, and I recall many a day while he was napping admiring that very sweet feature about his face.  

Quote of the day: The essential thing is not knowledge, but character. ~
Joseph Le Conte

I continue to be worn down by a horrific headache. It is so bad that it is hard to keep my eyes open due to the pain. Yet I knew staying home all day wasn't a solution either. So today Peter and I went to Huntley Meadows Park. This 1,500-acre park is one of the largest non-tidal wetlands in our area. We hadn't visited this park in a long time and to me our visit was overdue. I love the boardwalk at this park, which takes its traveler over beautiful wetlands where you can see some wonderful birds. As soon as we walked on the boardwalk today, I noticed the ducks and Peter made two observations. The first observation was that the wetlands looked flooded, more like a pond then what we were used to seeing. The second observation was the boardwalk structure looked completely new. Peter was right on both accounts. The boardwalk wood had been replaced with an environmentally friendly material in October of 2010 and the area clearly had a very busy beaver building dams and creating ponds which never seemed to exist on previous visits.

As we kept walking along, here was the next beautiful sight we saw, an egret. This egret was rather camera shy today, but nonetheless was a special sight to see on a February day!

Peter was very happy to see this mud and stick structure, or in other words, a beaver lodge. This confirmed the presence of a beaver in the area. A beaver lodge, or its home, has underwater entrances to make entry nearly impossible for any other animal.

The walk and getting outside was the highlight of our day. Tomorrow we head to see another doctor for a consultation. So this will be the third oncologist I have seen in two weeks. I am hoping he can shed additional insights on my situation and care plan. Nonetheless all of this is highly stressful for me and exacerbates my already daily headaches. So I am shutting down the computer for the night to rest my head and eyes.

Sunday, February 19, 2012

nSunday, February 19, 2012

Tonight's picture was taken in May of 2002. Mattie was one month old and that afternoon I decided to take all sorts of pictures of him to create a birth announcement. Though I never used this picture, I happen to love it! It shows Mattie's curiosity and intrigue with following my every move.

Quote of the day: Imagination enhances our lives by supplementing the inadequacies of the real world, or our experience of it, and can also give us the vision to transform present reality into something new and better.  Erik Blumenthal


Today was a day ruled by imagination. Not my imagination, but that of my friends. I met up with Tanja and Katharina in the morning. Katharina celebrated her 12th birthday last Friday, and though we had plans last week to make her day memorable, they graciously rescheduled these plans because of my medical issues. We had a lovely lunch together and chatted about all sorts of things. Katharina even surprised me with a few gifts of my own. She picked out a bracelet for me that says Mother, Love, Forever. It has to be one of the most thoughtful gifts I have received, and it means even more because it was given to me by a child. After lunch, Tanja arranged for all of us to have a double chocolate pedicure at the Hotel W in Washington, DC. I knew such a thing was possible in Hershey, PA, but I did not know such fun existed in my hometown.

Tanja snapped a picture of Katharina and I getting a pedicure. What made the day extra special was knowing that Katharina had never been to a spa before nor had she ever had a pedicure before. So it was very special to share these firsts with her. She enjoyed it, and the fragrance of chocolate was intoxicating. They even gave us hot chocolate to drink! A chocolate pedicure is an incredible experience for a chocolate lover. Mind you, you aren't putting your feet in a bowl of chocolate, but instead your feet soak in warm milk with chocolate shavings, and then all the products used have essences of chocolate and chocolate oils. I was thrilled to be introduced to this heavenly experience.

I told Katharina that in a way she also helped to inspire a party my friend Tina was hosting for her daughter this evening. One day a couple of weeks ago, I told Tina that I wanted to do something special for Katharina's birthday. So Tina began brainstorming all sorts of ideas with me. In the process, she was mentioning the wonderful cupcake stores in DC and Virginia. Her conversation inspired me and I told Tina in jest that she could plan my next birthday party ----sweet store hopping. So tonight I got to see what such a party actually looked like in action and I had the honor of being invited.

There were 17 girls at the birthday party today and in order to get them to six different stores, Tina creatively had a solution to this transportation issue. She rented this amazing pink limo. This limo caught the attention of almost everyone we passed in Georgetown. People were snapping pictures of it and the girls inside the car were excited and felt special. Tonight's adventure I have no doubt was something these girls won't forget anytime soon. It was like being a character in the movie Willie Wonka and The Chocolate Factory, and of course the big difference was there was no flying glass elevator. Instead, we had the longest and most pink car I have ever seen.

This pink number took us to six different sweet locations: Sprinkles, Georgetown Cupcake, Pops, Sugar Cube, Alexandria Cupcake, and the Dairy Godmother. Our first two stops were in Georgetown, and each time we got out of the car, people would come over to talk with us and wanted to know what the occasion was and how they could rent this car. This car got the attention of both young and old and the girls inside the car were having a great time, singing along, joking around with each other, and if there were room to dance, they would have been doing that too.

Some of our stops were crowded. For example, Georgetown Cupcake (MY FAVORITE ON THE TOUR!) is so popular, the line to get into the store was about two blocks long. But Tina preordered cupcakes and simply walked into the store, grabbed the box (with mini strawberry cupcakes inside---which were incredible) and then the girls got to enjoy them in the limo (as you can see in this picture). At each location stop, all the girls got out and we took a landmark picture!

One of the stops along the way was to a candy store called Sugar Cube. Though we took photos of the girls at each location, I think this one gives you a feeling for the energy level, fun, and happiness within this group.

I did things today I had never really done before. I am so lucky to have friends who want me to share in these special moments and include me in this way. Naturally of course, I am grateful and happy for this, and yet at the same time I would be lying if I did not say it is hard to know that I won't have these special moments with my Mattie.