Saturday, September 29, 2018

Saturday, September 29, 2018

Tonight's picture was taken in October of 2003. Mattie was a year and a half old and we took him to his first fall festival. This particular festival featured a petting zoo. Check out Mattie's face! He did not know what to make out of this HUGE pig. I tried to encourage Mattie to pet the pig, but that did not go over well. Instead, I just described the texture of the pig's coarse hair to him. Mattie was a combination of scared and intrigued here. 


Quote of the day: I feel the capacity to care is the thing which gives life its deepest significance. ~ Pablo Casals


Peter and I are headed to Dallas, Texas tomorrow. We have been invited to attend a two day psychosocial training.  I have only been to the airport in Dallas before but have never stayed in Texas. Naturally with us being away, we have to think about our furry family members! They can not stay home alone. 

I am not sure who gets more anxious about taking Indie and Sunny to be boarded.... the animals or me!!!! It's a toss up. Thankfully Peter was home to capture Indie and get her into her cat box. It isn't a pretty process and literally our walk-in closet was turned upside down, as Peter was trying to coax her out of the closet. Sunny of course is more compliant, as he has no idea where he is going until he actually gets to Dogtopia. In fact, as soon as we make the turn onto the facility's street, you can sense his anxiety. Sunny definitely has separation anxiety and it shows up as soon as someone tries to take him away from me. He will work hard to make a b-line for me and gives me that look which tells me he is ready to go home. It isn't that he doesn't like Dogtopia, it is simply the fact that he rather be with me. He is an emotional fellow and we feed off of each other. 

Of course one of the beautiful things about Dogtopia is their webcam. I love checking in on Sunny while I am away. So not only do they text message me daily, but I can see him for myself. 

Can you see him? Sunny is lounging on a cot at the 7 
o'clock position. A strategic spot, as this puts him closest to the door out of the room. 

Friday, September 28, 2018

Friday, September 28, 2018

Tonight's picture was taken in October of 2003. Mattie was a year and a half old and every Fall, we would take him to a different fall festival each weekend. The festival featured in this photo was in Leesburg, VA and it featured a petting zoo. I absolutely love Mattie's expression as he was having an up close and personal experience with a goat. 



Quote of the day: They say a person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for. ~ Tom Bodett

Today would have been my maternal grandmother's 111th birthday. She died in 1994, 24 years ago, and yet I feel we are still connected. As we had a lot in common. In some ways, my grandmother was like a much older sibling to me. When I was born, my grandmother was already living with my parents. My grandmother lost her husband to colon cancer at a young age and the options for women back then were not tremendous. So it made sense for her to live with my parents and in reality I was the one who benefited from this decision. My grandmother was the ultimate caregiver, a great cook, and simply gentle. 

This photo was taken of us while I was in college. I went to school in upstate NY, and though my grandmother and my parents were living in Los Angeles, they would come and visit. I remember taking this photo on a chair in the Westchester, NY Marriott. 


------------------------------------

I went back to physical therapy today and I am happy to say that I feel the cortisone is working. It is hard to believe that inflammation can cause so much pain. But I am motivated to avoid surgery, which is why I complied with the steak knife sized needle this week. Ironically now that this pain is under control, I am developing back pain and pain in my other hip. The therapist says this is normal as apparently the rest of my body has been walking differently for months to compensate for my right hip problem. 

I view this as moving in a positive direction, but of course the question will be..... will the inflammation come back as the cortisone wears off? A question no one has the answer for right now. Fortunately I am used to living with a one day at a time approach to life, an approach that I adopted quickly when Mattie was in cancer treatment. Yet I never returned to a forward/future oriented approach after Mattie's death. Naturally we continue carrying on, but I have to say we live in a permanent limbo. Meaning that we know Mattie is no longer alive but his presence remains with us always, and drives the work we do, along with our attitude and outlook on a daily basis. We are parents, but not parents. We don't live with a child who has cancer, and yet we will always live with the ramifications of having lost Mattie to cancer.  This constant tugging and pulling of living in both the non-cancer world and the cancer world is alive and well.  

Thursday, September 27, 2018

Thursday, September 27, 2018


Tonight's picture was taken in October of 2003. Mattie was about a year and half old and as you can see was multi-tasking. Something Mattie did all the time! This was classic Mattie. On the TV was a children's video playing in the background. This was how Mattie watched TV. Meaning he was co-processing what was happening but also was actively doing something else. The something else in this case was going through all his videos in the TV cabinet, checking them out, stacking them, and overall playing with them. 




Quote of the day: Hang on to your hat. Hang on to your hope. And wind the clock, for tomorrow is another day. ~ E.B. White


Like many Americans today, I too was glued to the continued coverage of the Kavanaugh hearing. Hearings that involve allegations and questioning of professional behavior interest me. Most likely because of my own role as a licensed professional and having to preside over many ethical violation hearings of counselors in the District of Columbia. As such, it is hard to weigh evidence and to come up with a fair conclusion. I am not writing about this hearing today because this brings up all sorts of feelings on both sides of the aisle. Feelings which have no place or merit on this blog. 

But what instead is of value to me as it relates to this blog is the power of social media and the ability for others to follow along even if something is not personally happening to them. I would say that all America is invested emotionally in this hearing today. The constant coverage enables this! To me my personal analogy was Mattie's cancer diagnosis and our public expressions about our daily journey. When I first started writing the blog in 2008, I did it to update our community and to keep family and friends posted on the daily occurrences, surprises, nightmares, and joys Mattie experienced while undergoing treatment. I know many people would tell me that they felt like they were going through this with me each day, while reading my words. In fact, people who I never met before would tell me that they felt like I was their friend because they got to know such intimate details of our lives. 

Despite my candor about Mattie's treatment, I do admit that I did not post 100% of what was happening to us. I felt that some things were too personal, or could be construed as hurtful by my readers. Especially those who wanted to support us and thought that visiting us in the hospital and talking to us would help ease our isolation. Or at least this would show they cared and were providing support. The problem was I understand my perspective on this and I could understand theirs as well. But at the end of the day I realized that I had a child who needed protection and also we needed a community to rally around him. I felt like I walked a fine line every day. Walking this fine line has consequences on one's nerves, energy, and attitude on life and people. 

I mention this because I have great sympathy for the family members of both sides portrayed in this hearing today. Having the courage to talk openly about one's beliefs and character as a person is not easy, but doing so in such a public forum, allows for all sorts of social media commentary. Commentary that has ways of hurting family members. Permanently. Regardless of what happens in this hearing, my feeling is that both sides have lost and lives are forever changed. Which brings me great sadness. 

Wednesday, September 26, 2018

Wednesday, September 26, 2018

Tonight's picture was taken in October of 2007. We took Mattie that weekend to Glen Echo Park in Maryland. They have a lovely Dentzel Carousel which Mattie always enjoyed, especially picking out which animal he was going to ride. Typically we took Mattie to see a puppet show at the Park, followed by the Carousel. The puppet company in the Park is incredible as the theater designs their own marionettes and does a memorable performance for kids and adults! I just love Mattie's smile in this photo! 




Quote of the day: People are like stained - glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within. ~ Elisabeth Kubler-Ross


After two weeks of rain and grayness, the sun came out today! Of course now as I am typing this, we are having a major rain storm. It was glorious to be outside today with Sunny. Unfortunately Sunny cut the bottom of his paw pad the other day. I took him to the vet and she feels it will heal on its own. But she cleaned out his paw and has him on antibiotics. Sore paw on all, this boy loves his walks. He hobbles a bit, but you can't keep a good boy down. 

I had a follow up visit with my physical therapist today. She feels that by Friday I will know if the cortisone will work for me or not. The hope is it will, and that if we can keep the inflammation in my hip socket at bay, that I could potentially live with a torn labrum. But if the cortisone doesn't work in three days, then we know I have an issue that only surgery will repair. So I take it one day at a time and religiously do my exercises at home. 

Peter and I are headed to Dallas, TX on Sunday. We have been invited to attend a training called Bright IDEAS. One of our researchers developed this intervention which is being offered to parents caring for a child with cancer. The goal being.... to improve problem solving skills and thereby reduce parent distress. The intervention is offered to families by a psychosocial professional, but the research team has decided to include some non-profit advocates in the training this time. They want to get more direct feedback from parents. So at this training, we will be surrounded by clinicians. Though these are psychosocial professionals, I have found that they think differently than parents. Mainly because there is a divide between providing care and being the recipient of it. Though I think skills training can benefit most of us, I have concerns about how and when such skills are offered to parents who are actively supporting a child with cancer. 

All I know is when Mattie was in the hospital, I could hardly talk to anyone, much less have visitors enter our room. As Mattie got sicker, his desire was for isolation and no noise. If someone would have approached me to participate in skills based training, I most likely would have thrown them right out of the room. Thankfully not all parents are like me, but I have to believe my experiences and insights can help tailor this intervention. It should be an enlightening experience and I am trying to enter it with an open mind.

Tuesday, September 25, 2018

Tuesday, September 25, 2018 --  Mattie died 471 weeks ago today. 

Tonight's picture was taken in October of 2002. Mattie was six months old and absolutely LOVING his "tot wheels." Tot wheels was a jazzy walker, designed to look like a car. Since Mattie desperately wanted to walk, the walker was the ideal gizmo for him. Once his feet touched the ground, he was off. He loved riding around inside our home and in our commons area. The commons area is fabulous, because it is completely gated off from the street! Mattie spent many hours in this vehicle and I can still recall all the sounds it made in my head.  



Quote of the day: The best way to find out if you can trust somebody is to trust them. ~  Ernest Hemingway


I saw Dr. Wolffe in July at Sibley Hospital. He was referred to me by the first orthopedist who evaluated me. Since then I have been doing my homework and Wolffe is considered a renowned physician around the country who specializes in hip arthroscopy, hip preservation and sports medicine. He is the surgeon for the Washington Ballet and other sports teams. Apparently he is one of the pioneers of arthroscopic surgery to repair the hip. In July, he prescribed physical therapy for my hip and to continue taking oral anti-inflammatory meds. I did physical therapy for two weeks and then the therapist dismissed me as she could see it wasn't helping. So I went back to Wolffe today for follow up and next steps. 

He told me in July that the next step before surgery would be a cortisone shot in the hip. Given that the surgery (even arthroscopically) has a long recovery time, the goal is to try to stabilize my hip pain and to push surgery off for as long as possible. I dreaded going into the office this morning because I was worried about the cortisone injection. 

I watched a youtube video to prepare myself for today, and instead of helping it elevated my fears. The video did not feature my doctor mind you. When I told Wolffe my fears today, as with a typical surgeon, he had NO emotional reaction. Part of me wants to know whether surgery picks the doctor, or the doctor picks surgery! There is just a standard personality pattern, I have noticed. 

But then again, I don't want an anxious or hysterical surgeon, do I!? It was the tone of the doctor today that caught my attention. I could sense that to him such a shot is common place and he does them all the time. Given his skill and that his patients don't have complications, I gave him the go ahead to administer the shot.  

After he left the room, his medical assistant came in to prep the room for the procedure. In the video I saw yesterday, an xray machine was used. Today, a hand held sonogram was used to precisely place the needle. 

Peter tells me that the needle was six inches long and the way the doctor approached my leg, was like a hibachi table chef. Actually his nurse even described the procedure as watching a chef cut through butter. Meaning that it is precise and easy! 

There is a level of trust one has to have when working with a physician. Today I gave into my fear and issues with trust and allowed him to administer the shot. So Hemingway's quote is quite apropos. I had to trust this doctor in order for him to gain my trust. Quite a commentary. However, I do not go into any medical procedure like the average person. I have a lot of baggage from Mattie's treatment that comes with me. MOST physicians can't understand this and I would beg to say that many people in my life don't quite comprehend it either. My fears maybe not be rational, but to me they are very real. I would say this doctor did not win me over with words or support, but it was his demeanor that captured my attention. In this case, having someone SO familiar with my issue and operating on people like me weekly, that it gave me the confidence today to have the shot. 

Bottom line, my physical therapist said the shot would be painful. The Youtube video looked painful, but today's actual procedure seemed to happen within seconds. He did it beautifully. I can't say I am pain free now however, but I hope to see a difference maybe in time. 

Monday, September 24, 2018

Monday, September 24, 2018

Tonight's picture was taken in October of 2003. Mattie was seven months old and he was sitting in a jumper. The jumper was a God sent. A friend of mine gave it to me as a gift. Basically it clips onto the top frame of a door. Within this thing, Mattie could touch the ground, jump around, and I could even swing him. I can't tell you how many nights we spent in this jumper just trying to calm Mattie down in order to go to sleep. 


Quote of the day: Hospitals often have limited resources, so when coaches are available to support patients in taking a more active role in their cancer care, it benefits everyone. ~ Dawn Wiatrek


A friend of mine gave me a copy of an article entitled, "Cancer coaches help guide patients during and after treatment." The premise of the article is that patients have many psychosocial concerns that are not being adequately addressed at the hospital and in treatment. Therefore they are turning to alternatives! I would say that the number one reason such psychosocial providers aren't adequately available in a treatment setting is because hospitals do not have the resources to provide care to adults as there isn't a reimbursement pathway in most cases for this care. Therefore without a payment source (other than philanthropy), the treatment center has NO incentive to offer this care. 

Just because psychosocial care is not adequately provided to adults with cancer, doesn't mean it isn't necessary or greatly needed. In fact it is! Which is why the article highlighted how cancer patients are turning to the community....... to cancer coaches in particular!

Coaches offer help with physical, emotional, and intellectual challenges. They provide advice on nutrition, exercise, weight management and other health issues. In many cases these individuals are cancer survivors themselves, so they have walked the journey personally. Do keep in mind though that coaches can cost up to $100 to $300 a session! Which is an out of pocket expense that not every patient can afford. 

As a mental health professional (and chair of a licensure board), I guess my first question would be..... why go to a coach when you can go to an a licensed counseling professional in the community? In some cases for the very same cost, but with a licensed professional having met substantial educational and training requirements. I visited two professional coaching training sites and the first one says..... "At this time, coaching is not regulated by any country or state. However, if you are serious about becoming a professional coach, your first step needs to be obtaining coach-specific training." The other site I visited discusses the 7 course training module in order to become a coach (http://www.thecancerjourney.com/cancer-coach-training/the-program/). I laughed because how do you compare a seven course training module to someone who earned a master's or doctoral degree in counseling/psychology, with years of training under one's belt before getting licensed?

Coaching is an issue that has come before me several times in my licensure board work. The problem is that there is a fine line between coaching and professional counseling, which is why I predict within the near future coaches will be regulated. But in the mean time they are not and I wonder how well coaching is actually working for cancer patients? After all coaches have no professional entities expecting them to uphold ethics and practice standards, which means to me that the experience patients have with a coach will be VERY coach specific. 

At the end of the day, the real problem is our medical system. A system that continues to compartmentalize care! Instead of embracing the impact of psychosocial support on treatment outcomes. The real news story should be about health insurers and how the advocacy community needs to press payors to mandate psychosocial care from treatment facilities, in order for these facilities to qualify for reimbursement of services. 


Cancer coaches help guide patients during and after treatment:

https://www.wsj.com/articles/cancer-coaches-help-guide-patients-during-and-after-treatment-1537149901

Sunday, September 23, 2018

Sunday, September 23, 2018

Tonight's picture was taken in September of 2002. Mattie's pediatrician encouraged me to have Mattie spend time each day on his tummy. Mainly because Mattie wasn't crawling and had no desire to crawl. She felt he needed to strengthen his tummy muscles. But here's the thing I learned about Mattie. I couldn't make him do anything he wasn't ready or comfortable doing! Mattie had no desire to crawl, but was very focused on walking and weight bearing on his two feet. Mattie bypassed crawling altogether. This was the story of Mattie's life..... when Mattie was ready, that was when things were going to happen. His own time schedule ruled and I learned as a mom to not get wrapped up with standard pediatric milestone dates and times. 


Quote of the day: When the world around me is going crazy, and I'm losing faith in humanity, I just have to take one look at my dog to know that good still exists. ~ dogareloveon4legs.com

Last night I was in a foul mood when I got home from dinner. Sunny seemed to understand that something was off. So he followed me upstairs and stayed close. Well closer than usual. I did not even get a chance to change, because as soon as I sat on our bed, Sunny jumped up and sat right next to me. He is such a smart and emotionally sensitive fellow. 




It's quite a weather weekend of more rain and cooler temperatures. Thankfully we both bought real rain coats yesterday, as we were out and about in the rain today with Sunny in tow. 

We are slowly working on getting our candy storage unit up to speed to manage sorters and tons of candy. I don't think storage spaces were designed for volunteers, but we are always avant garde. We bought special battery powered lights to brighten up the space (since the units have NO electrical outlets) and by the time volunteers transcend arrive in November, there will be stations for unsorted, sorted, and binned candy. It is a major operation in a 10x30 space. 

We took Sunny for a walk in the rain and then headed to Mattie's school to check out memorial tree #4, which was planted on September 8th (the anniversary of Mattie's death). This white swamp oak is looking very good and is clearly appreciating all the rain. 

The tree already has some changing leaves! So clearly in a matter of weeks there will be no leaves on this baby tree. Yet we are making plans to plant bulbs around the tree (tulips, crocus, and daffodils), as it is always a wonderful treat to see these flowers sprouting up after a long winter.