Saturday, December 8, 2012

Saturday, December 8, 2012

Tonight's picture was taken in December of 2007. We took Mattie one weekend to Brookside Gardens in Maryland. This Garden does an incredible holiday light display. Unlike the typical displays that you drive through, this one requires you to park and walk through gardens. Yes it was cold, but it is worth the walk! The gardens look magical and it is a wonderful way to experience the lights and the season. Mattie loved the whole event and after the walk, we entered the visitor center to warm up where they served cold cocoa (of course Mattie wasn't going to drink that ---- it was a chocolate product ---- which he HATED!) and cookies. While inside, Mattie posed with one of the adorable statues. This photo always makes me laugh!


Quote of the day: Loss alone is but the wounding of a heart; it is memory that makes it our ruin. ~ Brian Ruckley


You are used to hearing about my typical day on the blog. However, last night while Peter and I were out to dinner in our complex, we bumped into our friend Maria. Maria is an avid blog reader and she knew exactly how I was doing. But she then turned to Peter and asked him how he was doing. Maria began working in our complex in the same year we moved in. So she has seen me migrate from a graduate student, a professional, a mom, and then parents battling childhood cancer. Maria's conversation inspired me to tell you a story about Peter.

Peter got up bright and early today. Not to do something nice for himself, if we can even figure out what that is these days, but instead to take one of our neighbors out to a gardening center to buy a Christmas Tree. This woman lost her significant other last year and it was this couple's holiday tradition to go to a particular gardening center to pick out a tree. Though her significant other is no longer physically with her, she wanted to continue the tradition. Yet the gardening center is out in Virginia and she doesn't have a car. This is not the first kind deed Peter has done for this neighbor. He has gone grocery shopping for her on the weekends and has even escorted her to the doctor when she needed surgery. I am not sure any of my readers would know any of this if I did not write about it. Peter is not the kind of husband who needs to be prodded to do the right thing. He just gravitates to do good deeds, which may be one of the reasons I fell in love with Peter in college.

They picked out a tree together, Peter set it up for her, trimmed it accordingly, and this evening she sent Peter a photo of the lights and some of the decorations she has adorned the tree with.

 

When Peter came back home after the tree set up, he smelled like a pine tree. This fragrance reminded me of all the trees Peter and I bought together and decorated. Seems like this all happened in another lifetime. It is very hard to go to friends' homes and see the signs of Christmas everywhere, the excitement of purchasing presents for children, and hearing about parties and festivities. These feelings are no longer in our hearts and minds, and perhaps this is yet another journey.... the quest to find peace during these holiday seasons without the joy of Mattie in our lives. It is a tall order.

Friday, December 7, 2012

Friday, December 7, 2012

Tonight's picture was taken in December of 2007. There is nothing wrong with your eyes. The photo is blurry. I posted it because I wanted you to see what I entitle the "impish" side of Mattie. Before I snapped this photo Mattie had an absolute melt down about something (this is a pre-cancer picture). He was crying and hysterical. I learned early on with Mattie that when he was having a moment, I had to remain calm. If I reacted by screaming or getting irritated it only made matters worse. Mattie was a late talker and tantrums were a big issue for us. Mattie could have about five or six major ones in any given day. The kind of tantrum where he would stop walking in the middle of a shopping mall and just make a scene (which maybe one reason I am not wild about malls either anymore). Raising Mattie was very insightful for me on so many levels, even before cancer entered our lives. Any case, tonight's photo was taken after the tirade. I did this on occasion because I wanted him to later see what he looked like. The impish face to me says it all. What it said was he was sorry but also had to laugh because when he could see what he looked it, his behavior made no sense to him. Mattie and I are both emotional beasts, so I understood his tirades very well. We got each other, but we were also good at being checks and balances for one another.


Quote of the day: There was a roaring in my ears and I lost track of what they were saying. I believe it was the physical manifestation of unbearable grief. ~ Barbara Kingsolver


I am most definitely happy that my test turned out well this week, but that doesn't eliminate the fact that I still have symptoms that bring about pain. One of my doctors called our home last night and now has me on antibiotics. I wish I could say they are helping, but so far the issues are still present. Naturally when one part of my body aches, it seems to impact my head. I have had an intense headache now for two weeks straight. That alone is debilitating. Yet through all of this I plugged along today. My mom and a good friend have told me to stop moving and rest. It is good advice and I hope to take it this weekend. I physically feel worn out and drained and that isn't a good sign for me. Times like this impact my writing, so I am signing off for today. Until tomorrow.  
 

Thursday, December 6, 2012

Thursday, December 6, 2012

Tonight's picture was taken in December of 2007. That particular day I went to Mattie's kindergarten class and read them a story called "The Gingerbread Baby." The main character in the story was named Mattie! In addition to the story I baked home made gingerbread cookies and brought frosting and other goodies into the classroom for the kids to decorate their cookies. As you can see Mattie brought his cookie home. Mattie was more interested in the design than the actual eating!







Quote of the day: Love built on pain-the kind that lasts: whatever you love can be taken away from us at any moment but the loss of what we love belongs to us forever. ~ Louise Doughty


I began my day by going to a Combined Federal Campaign training session. The Combined Federal Campaign (CFC) is the only authorized charitable-giving drive for employees in the Federal workplace. Established by Executive Order in 1961, it continues to be the largest and most successful workplace fundraising model in the world. However, in order to be listed as a local charity with the CFC, the Foundation must apply each year. It isn't a renewal process each year which would make it much easier for us. Instead it is a full fledged application with multiple appendices required. In any case, the workshop I attended today was mandatory for 2013. Somehow the training wasn't as daunting this year since I went through it and the application process last December.

After this training session, I then found the courage necessary to walk into the post office with 500 envelopes to mail. The first thing I did when I walked into the Foundation Post Office was I looked for Darryle. Darryle is the amazing mail clerk who helps me. Thankfully he was there, because if he wasn't I would have walked right out the door. Why? Because what Darryle and I do together is a labor of love. Darryle hand cancels every envelope of mine, and while he does that, I use the post office first class stamper and mark each envelope. We have quite a system. However, you have to understand he isn't only helping me in the process. He is working with other customers so the line doesn't get unmanageable. Needless to say, it took Darryle and I an hour to stamp every single envelope. Most postal employees wouldn't put up with this. It is labor intensive. Yet Darryle supports our cause and is genuinely a compassionate person. I watched him help all sorts of customers for an hour. He loves his job, he loves people, and wants to make a difference. If only every employee in the workplace felt this way. Taking pride in one's job and feeling good about helping someone are gifts.

While I was at the mail counter stamping and stacking envelopes, I naturally called attention to myself. It is HARD to hide 500 envelopes. So I struck up conversations with many, many customers about the Foundation. It was actually a very rewarding 60 minutes. You would have thought people waiting on line at the post office would have been furious with me. But they weren't. They were intrigued by what I was doing and with Darryle balancing them and me, it made for a calm atmosphere. This year the Foundation gave Darryle several gifts. He was beeming ear to ear that we thought of him and tomorrow I am submitting a formal commendation letter to the post office for Darryle. To me remarkable, loving, and special people need to be called out and recognized.

After working with me an hour today, he wasn't tired at all! Instead, he asked me when my next mass mailer was scheduled for. Darryle feels we are a good team, and is ready to help. I basically asked him if there was a better way for me to do this, rather than coming in and dumping all these envelopes in front of him. His response was NO! He told me I was super organized, and proceeded to tell me how others have approached such a mass mailer. He told me they come to the counter without address labels or the correct postage. As Darryle knows, he and I work on this in stages. I bring him a sample envelope to weigh two weeks before the mass mailing. I purchase all the stamps ahead of time, therefore by the time the mailing gets to Darryle it has all its labels and stamps on it. Yet despite all that prep work, there is still more to do at the post office. Tasks can be challenging and daunting, but the attitudes of people you work with can make it or break for you. Working with someone like Darryle is energizing, because he feels he is indirectly helping to raise money for childhood cancer, and doesn't look at the mass mailer as a chore.

This evening I attended a jewelry party. My friend Heidi introduced me to her neighbor, Jen. Jen has been very kind and consults with Peter and I on occasion about Foundation Fundraising. Jen's boss happens to design jewelry (http://taylormadegems.com/) and tonight a portion of the sales went to the Foundation. I was thrilled to see so many women buying jewelry. But more importantly I appreciated the camaraderie of my friends Heidi and Tina who were there. Social situations, which are not directly Foundation related, are no longer easy for me. Especially when they involve groups of moms. So having two people who I knew around was very helpful to me and so appreciated. 

Wednesday, December 5, 2012

Wednesday, December 5, 2012

Tonight's picture was taken in December of 2008. Mattie's "girlfriend" Charlotte was celebrating her 7th birthday at a Japanese Restaurant. Mattie LOVED the entire experience. If I had to entitle this photo, I would call it "The Three Amigos." Charlotte was sitting between Campbell and Mattie. Mattie met Charlotte and Campbell in kindergarten, and they became the closest of friends. In fact, Charlotte always told me that the three of them were going to attend college together and be roommates!


Quote of the day: Suppressed grief suffocates, it rages within, and is forced to multiply its strength. ~  Ovid


Today didn't go as expected, which was actually an amazing and wonderful surprise! Typically I try to go to a hospital setting for any sort of radiology procedure. But when my doctor recommended Washington Radiology Associates (WRA) I listened. I had gone to WRA right after Mattie died for a head MRI for migraines. But since that point, all my other tests have been performed at hospitals.

Needless to say after I had an internal sonogram in February, I was very apprehensive to do another one EVER again! What I learned today is that if it is done correctly, it doesn't hurt. Which leads me to see that February's experience was a nightmare because the two techs were incompetent and insensitive. I experienced medicine at its best today.

To take a sonogram, you need to have a full bladder. It enables the images to be clearer. However, a full bladder is a torturous feeling for me. When the tech assigned to me saw me doubled over in pain, she couldn't have been nicer or worked more efficiently. She talked with me throughout the sonogram and even told me what she was seeing. I found it very comforting that someone was talking to me like a human being and inviting me to be a part of the assessment process. Typically when you take a sonogram, the tech has nothing to do with you. Basically moves the magic wand around your tummy and snaps pictures. So I noticed a difference in today's experience immediately. However, here is the stunning part. For the second half of the procedure, which involves the internal sonogram, the tech told me she had to get a radiologist before proceeding. When the doctor walked in, he introduced himself to me and asked if I ever had a transvaginal sonogram before. I responded that I had and I unfortunately do not care for the procedure. He could have brushed over that comment as so many physicians do, but he did not. Instead, he said he was sorry to hear this and wanted to know what happened with my last sonogram. He asked me what was painful about it and he truly listened. Needless to say a procedure that I dreaded and feared was actually just fine. It was fine because I was treated like an important part of the care team, valued for my feelings, and the doctor even said that if I was in too much pain, he was stopping the test. I was absolutely stunned! I have experienced a lot in the medical field, and this level of concern and compassion isn't usually forthcoming.

This radiologist sat by my side and literally told me everything he was seeing on the sonogram screen. He alleviated my fears and basically told me that my current issues have nothing to do with the cysts that my doctors are following since February. So that is wonderful news. The doctor said that he feels it is important to reduce patient fears. I told him I loved his philosophy and we started talking about how medical tests produce fear in me because of Mattie. The doctor asked me all about Mattie, about his cancer, and he and the tech were moved by my loss. I left today's test feeling like I had been heard, that I received quality one on one medical attention, and that they wanted me to feel comfortable and secure. They were successful.

I am good at complaining when something doesn't go right in the medical profession, but I also do not let good deeds go unnoticed. When I got home, I logged onto WRA's website and found a way to give the practice on-line feedback. I wanted them to know what a difference they made in my life today. While on the website I learned that WRA is a private radiology practice run by physicians since 1948. In fact in their website overview they state that "the patient is the most valuable member of our practice..... treating one patient at a time, we pledge to maintain our leadership in providing state-of-the-art, compassionate medical care to each patient who comes through our doors." I honestly did not know this was their philosophy, but I can attest to the fact that they practice what they preach.

This experience restored my whole perspective in medical care. Because it shows me that compassionate care is possible and IT DOES MATTER! It makes a difference in a patient's overall experience. I just couldn't believe that I left this appointment today not stressed out, but instead confident in what transpired and in the results I received. So many medical practices could learn something from today's experience. Treating a patient's medical needs and concerns are not only a physical thing, there MUST be a psychological component to every interaction. Such connections DO matter and they should be integrated into the field of medicine. People are human, we are not things or numbers. Amazing what happens with a little kindness. Kindness did not take hours, it took minutes, and yet it impacts the overall quality of patient care!

This afternoon, I headed over to my friend Margaret's house. Margaret was Mattie's preschool teacher. In fact it was Margaret who assigned the MOON symbol to Mattie. Mattie was know as Mattie Moon that first year in school, this symbol was chosen for Mattie because it started with the same letter as his name. Mattie Moon however is a name that has stuck with ALL of us. So much so that many of us can't look at the moon now without thinking of Mattie.

Margaret and I instantly connected with each other when Mattie entered school. I always tell her that when Mattie attended Resurrection Children's Center, he not only came into his own and developed confidently, but I found a wonderful friend in the process. Margaret and I worked six hours today on the Foundation's December mass mailing. I greatly appreciated her help and our time together. We talked straight for six hours, we never have a lack of conversation with each other. Which is truly a special gift. By the evening, not only was the Foundation mailing stuffed and complete, but I felt like I had a special afternoon of connecting with a friend. Chatting and working together to accomplish a goal! It was very empowering for many reasons.

Tuesday, December 4, 2012

Tuesday, December 4, 2012 -- Mattie died 169 weeks ago today.

Tonight's picture was taken in December of 2008. What you can't see was right next to Mattie and Peter was a huge dog. This dog belonged to one of my students and she thought Mattie would love to spend the afternoon with Jacks. She was correct. So in essence Mattie and Jacks had a race with each other. If you look closely you can see Mattie smiling! Which wasn't an easy accomplishment since as Mattie's treatment continued on the impact on his mood was significant.




Quote of the day: Here’s what I know: death abducts the dying, but grief steals from those left behind. ~ Katherine Owen


Tonight I went on the Internet to look up the test I am taking tomorrow. Though I am VERY familiar with the test, I was curious to see how it was described. In one of the descriptions it says that the test is NOT painful! I literally laughed out loud with that statement! To me it seemed as if I was reading a some sort of promotional material put out by the manufacturer of the test! Because anyone in their right mind has to think this test is painful! In fact, I would advocate for this test to be given with sedation.

Having been exposed to the health care system in such a significant way with Mattie's cancer battle, I realize there is just SO much that needs an overhaul and that must be changed. I am continually perplexed with the level of insensitivity that doctors and radiology techs have for patients undergoing procedures. The doctors prescribe the tests but they really do not take seriously the fears that their patients express. I saw this happen time and time again with Mattie and his first oncologist. Actually Mattie's first oncologist gave me very rich material that we use often when we are asked to educate health care professionals about our experience. Some of the things this doctor said to us were so off base and insulting, that they seem too far fetched to be real. But unfortunately they were VERY real, and my mind has trapped each and every one of his insensitive comments.

Recently I was talking to a medical doctor at the palliative care seminar we attended and I told her that medical students should have to experience exactly what their patients do. From living in a hospital room, to IVs, and even procedures. Chances are real personal insights would rapidly change the scientific coolness that they embrace and take pride in!

This afternoon, I went to my friend Mary's 84th birthday luncheon. I met Mary in 2008, at her 80th birthday party. Now four years later, I can safely say that I have spent the last five birthdays with Mary. Though Mary was unable to speak, it was very evident that she appreciated the party, those in attendance, and the beautiful flowers everyone brought to her.





 

Monday, December 3, 2012

Monday, December 3, 2012

Tonight's picture was taken in December of 2008, our last Christmas with Mattie. Mattie spent Christmas at home away from the Hospital, and not unlike Thanksgiving, it wasn't a happy holiday. I typically feature a photo of Mattie each night, but tonight I wanted to post this so you could see how Mattie decorated his space. After Mattie's limb salvaging surgeries, he spent a great deal of time sitting and scooting around on the floor. It was how Mattie compensated for the fact that he couldn't walk. Mattie decided to claim a part of the living room floor and set up his Christmas train. In years past that train always went around our Christmas Tree. But in 2008, running between the hospital and home, it was impossible and unsafe to set up a real tree. That didn't stop Mattie! If there was no tree, then Mattie was going to improvise. Around the train was a host of things from Legos, Wall-E, toy cars, to a poinsettia. This set up grew even bigger over time. When Mattie died in September of 2009, with him also died Christmas in our hearts. We no longer set up a tree, put up decorations, or in essence celebrate the holiday. Nonetheless, on occasion when I go into our walk-in closet to get something, Mattie's train stares at me in the face. I remember how much Mattie loved that train, the Christmas music the train played, and the fake smoke that came out of its stack. It is hard to know that other families are decorating for Christmas now and headed to share their traditions with each other. I am certainly happy for them and yet sad for us all at the same time.  


Quote of the day: Though I knew in my mind that others had felt such loss, this loss was mine, and I felt that no one would ever understand it, and to try to explain the loneliness and pain I felt would be futile. ~ Linda Hawley


My day began bright and early. My doctor wasn't working in her DC location today, she was instead at her Rockville, MD office site. Since she was accommodating me around her schedule, I was very flexible, and took whatever time she gave me. She wanted to meet at 9am, which isn't a problem per se, unless you are aware of the horrible traffic in the DC area before 9am. It took me over an hour to get to her office this morning, and that certainly did not help my stress level.

This doctor has been following my case since February. It helps to work with someone who knows my history, which is why I wasn't rushing to the ER this weekend, unless I assessed a crisis. She examined me and is sending me for an internal sonogram on Wednesday. If you are unfamiliar with an internal sonogram, consider yourself very fortunate. To me such an assessment could be used as a form of torture! Why such a procedure is done without sedation is beyond me, and I can't believe I am the only woman to feel this way. Any case, more definitive information will be obtained on Wednesday. But when she mentioned this test today, I almost jumped off the table. I first experienced this love of a test in February of this year. It was so horrific, that the whole sensation remains within my mind. It is my hope that after Wednesday, I will never be prescribed such a test again.

However, this physician and I are on the same page. We both believe that stress and grief exacerbate my health care issues. Regulating my stress levels now is not as simple as it might have been prior to Mattie getting cancer. In so many ways, it is as if Mattie's cancer has changed how I am hard wired. The littlest thing can make me jumpy, anxious, and stressed out. Things that probably other people would be able to put into context. So I am aware of these differences within myself.  

After my appointment, I drove back home. It was an incredible weather day in DC. Close to 70 degrees in December! Totally unheard of. So I text messaged Peter and asked him if he wanted to meet by his office for lunch. I needed to eat and try to de-stress before coming home and doing more Foundation work. We met and ate lunch outside! It was a bright spot to the day.

For the remainder of the day, I was working on our Foundation mass mailing. I had a helper, Patches. Well maybe she wasn't exactly helping, but she helped herself into the big box that stored our mailing envelopes. Got to love a cat!



 

Sunday, December 2, 2012

Sunday, December 2, 2012

Tonight's picture was taken in December of 2008. Mattie was home recovering from his second limb salvaging surgery. I took this picture because to me it screamed out HOPE! Mattie had three out of four limbs operated on and therefore he had a hard time doing anything independently like walking, dressing, feeding, and toileting. This was very frustrating for a once capable six year old. In addition to all of Mattie's disabilities, there was great fear associated with trying to walk independently, not to mention pain. Last night I posted a photo of Mattie playing the piano. Tonight's photo was next in the sequence. Once Mattie finished playing on the piano, he actually hobbled his way from the piano to the staircase. To me this photo spoke to Mattie's courage and his desire to want to walk again. I had no idea when this photo was taken that Mattie would never get a chance to rehabilitate.


Quote of the day: Remembering. Forgetting. I'm not sure which is worse. ~ Kelley Armstrong


Peter and I have had a challenging weekend. We had a great deal of Foundation work to do to prepare for our December mass mailing. However, the issue at hand was my physical decline. I am fortunate to some extent that I have access to several of my doctors by email. So last night I emailed my urologist. When she heard my symptoms, she instructed me to contact the oncologist who is following my case since February. I wasn't expecting that response, so naturally this made me very upset and only compounded my stress. Though it is Sunday, I worked hard at getting an appointment to see one of my doctors tomorrow morning.

Moments like this make us reflect on all the times we waited on pins and needles with Mattie. What would his scans show? Was the chemotherapy working? Has the cancer spread to his lungs? Would Mattie's pain ever dissipate? Would his appetite ever come back? All a lot of what ifs, for 15 straight months during Mattie's battle! A great deal of stress and anxiety were wrapped into each of these 'what if' moments! The stress and the aftermath of it remain within me, so much so that I have noticed when I am now asked to face things I perceive as stressful, a whole chain reaction unfolds.

So now that I have been told I need to see my oncologist again this week, I have a hard time separating this news from the news that hit us with Mattie. I  have no doubt that the stress of not knowing what is going on with my health further compounds my headaches. I am signing off for tonight and hope that tomorrow provides more answers rather than more questions.