Saturday, October 11, 2014

Saturday, October 11, 2014

Tonight's picture was taken in October of 2006. We took Mattie to a Fall Festival, and I asked him to pose by a ruler so we could see how tall he was and we could always remember that moment in time. I loved his big smile on his face and how the pumpkin seemed to be looking right at him! In addition, to Mattie having a great time, behind him you can see Peter, who was just a proud and happy dad. Peter took his role seriously and was always there to help guide, play, and nurture Mattie. I never had to tell him what was needed he just rose to the occasion. 



Quote of the day: Anxiety was born in the very same moment as mankind. And since we will never be able to master it, we will have to learn to live with it—just as we have learned to live with storms. ~ Paulo Coelho


In about a week and a half, Peter and I are scheduled to go to Toronto to present at a conference. To prepare for this conference, we have been reading several articles on the psychosocial consequences of losing a child to cancer. The ironic part of this is I feel like a case study on this issue and yet while reading these articles I have found them absolutely fascinating. Fascinating because in so many ways they are giving my plight a voice! They are describing the issues Peter and I are feeling, thinking, and certainly the physical and emotional concerns that I deal with on a regular basis. These articles helped me see that I am NOT alone. There are others out there just like me. Though I am not happy other bereaved parents go through the same problems as me, I did feel validated to hear this in very concrete terms. To me this was the best kept secret and the secret which you don't see in the common literature but which is out there in the research literature. Here is the fact, and it is that.............

Parents of children who die from cancer have higher anxiety, higher rates of depression, prolonged grief, poor psychological well-being, poor physical health and poor quality of life. 

This of course is a broad summary of several studies, but nonetheless it is very meaningful especially when you find yourself as one of the statistics they are referring to. I am signing off for tonight but did want to share my initial thinking with you, as I am sure more of my reflections will be coming as I further my research into this subject matter.

Friday, October 10, 2014

Friday, October 10, 2014

Tonight's picture was taken in October of 2006. Mattie was still in preschool when this photo was taken and at this point still wanted Peter's assistance and really wanted him to accompany him on all the activities at this fall festival. When I compare these photos to the ones I have been posting, from 2007, there were big changes that occurred in a year. By kindergarten, Mattie became much more independent and wanted to do all these activities by himself. Which was an adjustment at least for me. I had grown accustomed to doing everything with Mattie, but of course understood that Mattie had to develop and mature, and this was
ultimately needed for his healthy development. 

Quote of the day: My mind turned by anxiety, or other cause, from its scrutiny of blank paper, is like a lost child–wandering the house, sitting on the bottom step to cry. ~ Virginia Woolf


My friend Tina sent me a text message today to tell me about a Science Friday radio interview featuring a medical doctor by the name of Atul Gawande. Dr. Gawande is a professor at Harvard Medical School and a surgeon at Brigham and Women’s Hospital in Boston. He just wrote a book entitled, Facing Mortality, As a doctor. This is a fascinating title when you think about it because the nature of medicine is the heal, treat, and in most cases cure people of their ills. In fact, doctors do very well when they are doing just that..... DOING! When they have nothing to do and assess, my experience is, things become much more grey and complex for them and you as the patient! I saw it in Mattie's case as he was approaching death and I see it in my own medical case when there is NO data to explain how I am feeling. I love those circumstances, because without data, guess what? To a doctor, your problem doesn't exist. Instead, you can tell they are thinking you need a psych consult instead. The problem with all of this is many doctors do not work to coordinate care and therefore they only work in their own fiefdom (or specialty area) not seeing the bigger picture of how each of your body's systems may impact the other. But I digress.

When Mattie was battling cancer, it probably is no surprise to learn that Peter and I couldn't accept the fact that he was dying. After all we were his parents! But I have to tell you, a majority of his treatment team couldn't talk to us about this issue either! It was only two nurses in particular who had the courage to approach me with this news! So I imagine when Tina heard this radio broadcast today about a doctor who wrote a book on this topic, she felt I would want to hear this because what he was saying would resonate with me. Which it did. I included the link to his transcript below, but I copied a paragraph from his article below which to me was the most meaningful:


We had no difficulty explaining the specific dangers of various treatment options, but we never really touched on the reality of his disease. His oncologists, radiation therapists, surgeons, and other doctors had all seen him through months of treatments for a problem that they knew could not be cured. We could never bring ourselves to discuss the larger truth about his condition or the ultimate limits of our capabilities, let alone what might matter most to him as he neared the end of his life. If he was pursuing a delusion, so were we. Here he was in the hospital, partially paralyzed from a cancer that had spread throughout his body. The chances that he could return to anything like the life he had even a few weeks earlier were zero. But admitting this and helping him cope with it seemed beyond us. We offered no acknowledgment or comfort or guidance. We just had another treatment he could undergo. Maybe something very good would result.


I think this paragraph says it all! But it isn't only the field of medicine that has this issue. Medicine reflects our broader societal thinking, discomfort, and fear with death. How do we talk about it with our loved ones and how to we acknowledge death? Mind you Dr. Gawande, I hate to say it, is talking ONLY about the death of adults in this article, I would like to see how he handles untimely deaths, like that of a child!? If he is uncomfortable with adults dying, I imagine he would have a field day with children. In either case, I think his radio interview does give us a lot to reflect upon which to me seem quite accurate from my own experiences in the medical world. I think the fact that he is identifying the problem, calling it out, and verbalizing it is a good thing and I wonder if his book suggests ways to address and combat the issue? After all, acknowledging, comforting, and guiding patients should be part of a doctor's job description. They are treating people not cars, machines, and computers. If they wanted to have no human emotions factored into the treatment equation then I honestly think something went wrong when they chose their profession. It gives me hope when I see doctors, and this one is also a surgeon, who speak out for connecting with their patients and advocating for them to have the best quality and dignity of life.   

Facing Mortality, As a doctor:
http://sciencefriday.com/blogs/10/09/2014/facing-mortality-as-a-doctor.html?series=33

Thursday, October 9, 2014

Thursday, October 9, 2014

Tonight's picture was taken in October of 2007. We took Mattie to Cox Farms that weekend to their Fall Festival. As you can see, Mattie was an adorable ear of corn! This was another one of my favorite photos! There were so many we took of him when visiting these festivals, and we cherish all of them. Yet when I look at these photos it is hard to imagine that this was once a part of our lives. I know it happened but it seems like such a long time ago. It is hard to reconcile because what is more vivid at times is our cancer journey and that struggle.  




Quote of the day: Chronic anxiety is a state more undesirable than any other, and we will try almost any maneuver to eliminate it. Modern man is living in anxious anticipation of destruction. Such anxiety can be easily eliminated by self-destruction. As a German saying puts it: 'Better an end with terror than a terror without end.' ~ Robert E. Neale


There is something to be said about tonight's quote. I would say that childhood cancer does evoke chronic anxiety. Even when the threat of cancer is over however the anxiety remains. It harbors itself within your brain and therefore the terror is really never over. It takes great strength to fight back this terror and to be able to try to live life in the real world with others. I know that Mattie's cancer has done a number on me. I can feel it any time I am ill and especially when I need medical testing, scans, and have to wait for results. I feel like a caged animal. I am not sure those around me quite appreciate my level of fear. But I am deeply afraid, very anxious, and moved to tears. It is in these moments that I really need great support and a friend but I am not going to reach out because when I am most panicked I retreat for cover and protection. Only certain people really know that I need help and they have been through this with me these last couple of days. While I have been really quite scared. Thankfully the testing that I did yesterday revealed nothing serious. Which is excellent news.  

This afternoon, I was connected by Fox 5's reporter Beth Parker to Roya Giordano. Beth has done several wonderful Fox 5 pieces on Mattie Miracle, and after her coverage of the Giordano family last night, she felt we have something in common and decided to introduce us. Indeed Beth is correct! I learned from Roya Giordano today, the mom of Mathias, that he is 13 years old and has been fighting Osteosarcoma for 27 months. He has undergone a leg amputation, high dosage chemotherapy, several lung surgeries to remove tumors, and even a clinical trial. However, despite all he and his family have endured, he is losing his courageous battle with this horrible disease. I remember when Peter and I learned that there were NO MORE OPTIONS for Mattie. I can't think of more devastating news for a parent to hear. When fighting cancer, you get used to doing something! Anything. You would go to the ends of the earth to get treatment to save your child. But to learn in the 21st century that there is NOTHING left...... no other drug to try, it is unfathomable. Mind boggling and heart breaking. As a parent you begin to lose hope and yet you have your child to care for, looking to you for direction. You find the inner resources and dig deep because you are not going to let this little person down. 

It is amazing how there is a continuum of hope that we experienced during Mattie's cancer care, that went from hope to fight the disease and strive for a cure to the other end of the continuum which was hope to help your child have the highest quality of life until the end and to die with dignity and with the least amount of pain as possible. I say all of this but I have to tell you that NO PARENT should ever have to face such a continuum! It is ridiculous!!! What parent wants to even think about helping their child die???? It just isn't right.

As I watched Beth Parker's video of Mathias, I looked at his beautiful face and it brought me right back to 2008 and 2009 with Mattie. It reminded me of our own battle and how unfair life is. I do not understand why some children get cancer. Why does this disease exist, why are some families tortured so? I don't have answers, and yet when you look at Mathias sitting in his living room he seems very brave, determined, and courageous as he introduces his family's initiative to create a Virginia State license plate that reads, "Cure Childhood Cancer." I attached the link to the article below on Mathias and if you live in the State of Virginia, I encourage you to check out the application for this license. The family only needs 450 signed applications for the license plate to be approved! This license plate would be a great way to raise awareness about the disease and to bring hope to the Giordano family.....when hope is very much needed. 

Story about Mathias:
http://www.myfoxdc.com/story/26741254/family-looking-to-increase-childhood-cancer-awareness-with-specialty-va-license-plate

Wednesday, October 8, 2014

Wednesday, October 8, 2014

Tonight's picture was taken in October of 2007. We took Mattie to one of the local Fall Festivals in the area and as you can see he was enjoying one of the very long slides. This was a wonderful sight for Peter and I to see because it took a while for Mattie to get to the point that he LOVED slides. When Mattie was a toddler he was afraid of slides and did not want anything to do with them. In fact when we first took Mattie to the Fall Festivals he went down these slides with Peter. As he got older, he zoomed down them by himself. However, I always had Peter up top with him and I was always at the bottom taking photos. I wanted one of us near Mattie at all times, but of course there are some things you can't protect your child from, such as cancer. A reality we learned all too well.  



Quote of the day: The worst type of crying wasn't the kind everyone could see--the wailing on street corners, the tearing at clothes. No, the worst kind happened when your soul wept and no matter what you did, there was no way to comfort it. ~ Katie McGarry



This evening I went back to Virginia Hospital Center to take another test to figure out what is causing my pain. While sitting in the radiology waiting area, there was a little boy running around with his parents. This fellow was a live wire with a bad cough. I was distracted with my own pain and a very full bladder as one of the tests I was awaiting was a sonogram. Yet this little one just made me laugh, so I decided to ask his mom how old he was. I learned he was 15 months old. Needless to say, he was at the hospital to get a chest x-ray because of his cough and congestion and like any mom, she was concerned that her son was going to have to sit still and undergo a scan without her. Clearly she saw me in the waiting room sitting by myself and I would imagine she deduced I had no idea what she was going through. Unfortunately I knew the angst she was feeling! If I wasn't called back to my test, I would have given her some strategies because I know this Hospital does not have a pediatrics program nor any child life specialists on hand. Yet I have learned a thing or two about surviving scans with a child. 

In an ideal world, what this mom needed tonight was Linda, or a Linda equivalent. Linda was Mattie's child life specialist, and a person none of us could have done without. The beauty of a child life specialist is this professional could have helped this child tonight prepare for the x-ray, distract him up until the point of the actual x-ray, and would have educated the x-ray tech on the best strategies to work with a child to get the scan completed. If you think a child just sits still even for an x-ray, you would be wrong. Everything about a scan can be frightening, daunting, and scary. Even if a child isn't scared, sitting still maybe hard to do or even uncomfortable. Now add to the equation NOT feeling well and that makes everything much worse. Fears are compounded when you aren't feeling well, if you doubt what I am saying, think about this the next time you are in a hospital undergoing a scan! Then imagine how a child must feel unaccompanied by a parent. 

As for myself, I worked with an absolutely lovely tech tonight who couldn't have made the entire process go more smoothly. As is typical with Virginia Hospital Center, everyone really tries to accommodate your needs. I don't know how they seem to manage this but this customer interface needs to be a model that should be adopted at other institutions. I know it makes a big difference to my mental state when I know I have more compassionate people around me who are listening to me when I am not feeling well. I know I am not an outlier on this front and I just wish more hospitals would embrace this philosophy because it does make a difference in the quality of health care. 

Tuesday, October 7, 2014

Tuesday, October 7, 2014 -- Mattie died 265 weeks ago today.

Tonight's picture was taken in October of 2007. We took Mattie to Butler's Orchard in Maryland to go pumpkin picking. After picking a pumpkin right off the vine he went into their barn and literally had a ball jumping into the hay! The ironic part about all of this was when Mattie was at his first preschool in Washington, DC, we came to this farm as a field trip. All the kids loved jumping and playing in the hay except for Mattie. However, looking at this photo, I am sure you wouldn't have known this fact! That is because by 2007, Mattie was a completely different kid. I strongly believe that with early physical and occupational interventions and providing him with positive social and emotional environments, Mattie was able to develop to his full potential at a very early age.


Quote of the day: The greatest gift of human beings is that we have the power of empathy. ~ Meryl Streep



When my doctor left Washington Hospital Center, believe it or not, the Hospital never called me or even sent me a letter to tell me that my doctor had left. They did not alert me that she left nor did they alert me of her replacement. The only reason I knew she left is because my friend also happened to see this same doctor and when I met with my friend this summer she alerted me and also gave me a head's up that our doctor was relocating to Baltimore! She knew this information because she had recently seen this doctor right before her departure. Of course when a doctor leaves a hospital, she can't take her patients with her per se. But there are some doctors who you have a special relationship with in your life, and an oncologist is just such a doctor. In my perspective driving to Baltimore today was worth the three hour round trip car ride. This is a person who has been working with me since 2012 and knows my history and also understands the stresses Peter and I have lived with and continue to live with. That to me means a lot. 

Naturally you know I am going to have a funny story, because, I can't visit an office without having one, can I?! Before seeing the doctor, her assistant came in and took my vitals. After she took my blood pressure, she looked at Peter and then looked back at me and asked me why I looked so sad? At which point I told her I was sad because I had to be back here visiting the doctor. She let that be absorbed for a moment and then she asked why I was visiting. I told her my symptoms and that I was in pain, she began to connect the dots. After she left the room, Peter commended me on not popping her one. I told him I was very perplexed by her question since the office we were in was an oncology office. How could one NOT be sad???

I later learned from my doctor that many of the patients who come to the office are in post-treatment, meaning they are in survivorship mode. Which may explain her assistant's attitude. Yet to me this is still quite judgmental since there are a host of issues even in survivorship. Of course survivorship could look different for adults than it does for children. It isn't pretty for children at all because survivorship is fraught with many long term and in some cases serious health issues! I told my doctor that her assistant should consider herself lucky that I did not have my full game on today. I am much more aggressive as a caregiver than a patient. 

Any case, I am going for more testing tomorrow and hopefully will know more. She put my biggest fear to rest today and gave me some ideas about what the issue is that I could be dealing with. So having a plan is a great thing and knowing I have someone who is working with me on this plan and will be taking me through the steps of the plan makes me feel better. Someone I know I can trust. But right now I have two medical issues going on simultaneously and it was very important for me to tease out what was causing which pain and to make sure I had a doctor to turn to for help on both medical issues. 

Monday, October 6, 2014

Monday, October 6, 2014

Tonight's picture was taken in October of 2007. We took Mattie to a pumpkin patch at Butler's Orchard in Maryland. One of his favorite farms --- where he got to ride on a wagon which took us out to a field to pick a pumpkin right off the vine! Butler's Orchard was an experience filled with a corn maze, a barn filled with hay for the kids to jump in, and just a lot of old fashioned fun! 


Quote of the day: Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving and tolerant with the weak and wrong. Sometime in your life, you will have been all of these. ~  Gautama Buddha


I went to Virginia Hospital Center (VHC) today to get testing done of one of my issues. Going to VHC is always an experience. It is a very different hospital experience for the most part, though I don't want to be there either. No hospital is better than any hospital. PERIOD! However, VHC for the most part at least tries to have a customer service interface that helps! Naturally when you aren't feeling well, dealing with a friendly face can make a huge difference. 

Sitting in outpatient lab services today, I can safely say it was a zoo! I must have been there two hours waiting to get tests done. However, the woman who was overseeing the process and taking names and processing us through the system was stellar. She made the experience and she reminded me of Budda's quote tonight. She helped everyone! The young, the old, the frail, and she was sympathetic to all of our needs! I really think without someone like her, the crowd could have gotten totally out of control and unruly. But she kept thanking people for their patience, updated each of us on our wait, and she helped me by allowing me to go to the restroom several times! So she and I were already on the same page! 

In the midst of one hospital experience today, I worked it out so that I can see my other doctor tomorrow. She happened to have relocated herself to Baltimore. But Peter and I are making the trip to see her and I am happy that she is fitting me in because I do not think I could handle the anxiety another minute longer. I remember reading research about the physical impact of caregiving and grief on people when I was in graduate school, but now I am a living case study. It feels absolutely awful and I can't stand the constant medical scares, not to mention the taxing nature of feeling ill. All in all, it is absolutely draining on all levels and truly hard to describe.

Sunday, October 5, 2014

Sunday, October 5, 2014

Tonight's picture was taken in October of 2007. I will be posting a series of photos this month of Mattie going to all sorts of Fall Festivals. At each festival, Mattie always came home with a pumpkin and other goodies in hand. As you can see at this particular festival, Mattie was intrigued by the orange VW bug and posed for a photo in front of it. There was no telling what would be featured at each festival, which was what made them so entertaining, not to mention Mattie's reaction to each sighting and experience at them!


Quote of the day: The only thing we have to fear is fear itself. ~ Franklin D. Roosevelt

Though FDR's quote was not spoken in the context of illness, it nonetheless could very well apply! When you aren't feeling well, fear can take over very easily and your mind can run wild with all sorts of worries as to what could potentially be wrong with you. Unfortunately in my case, I have all sorts of reasons as to why my mind wanders, I lost Mattie to cancer, and I have seen the unexpected can and does happen! Second of which, after I lost Mattie, I went through my own cancer scare which was monitored for over a year. Now I am dealing with kidney stones and that is bad enough but this weekend, another symptom has arisen and the whole fear that started the cancer scans in 2012 is being called to the table again. So needless to say, FDR's quote speaks volumes to me today. This type of stress, I literally can't handle!

I wasn't up for much today and Peter tried his best to divert my attention. Which wasn't easy. The one thing I did leave our home for, was to visit Mattie's tree. His plaque has now been moved to his new tree location!

Mattie's Tree has now lost its gator bag as the colder weather is approaching and it is being braced with posts for support. You can now see the plaque at its base. So the tree now seems very ready to meet the colder weather months that are approaching.