I get knocked down.... but I get up again!

The weeks and months seem to be both flying by and never ending at the same time right now. It was hard to believe that my three month time frame for check up testing was fast approaching again. My oncologist ordered another CT scan to check on the progress of my second regime of chemotherapy treatments. Previously, in my blog posts SCANxiety and SCANxiety2  I  talked about the worry and anxiety that surrounds these tests for both the cancer patient and their families. These tests can bring hope or despair.  What will my latest test results be? 

Unfortunately it resulted in mixed results.  My cancer seems to be very stubborn and uncooperative!  It is still progressing despite the current treatment being given to suppress or eliminate my tumours. It is time again to pivot and cycle to the next stage, to control the spread of this disease. Plan C here we come!

At this time I have been referred to the Princess Margaret Hospital in Toronto and the potential to participate in a clinical trial with a new drug targeting my form of cancer.  We are hopeful that it will be something that I will be a suitable candidate for and able to join as soon as possible. My oncologist seems to think that I am a good candidate for this study and is advocating for me to join with the team at the hospital.

We definitely have mixed emotions at this time. On the one hand we are very disappointed and heartbroken (honestly) that my current treatments are not working or have stopped working. Although the side effects were increasing with this treatment, it was still manageable and attending Southlake for these treatments was really stress free for our family due to its close proximity to our home.  On the other hand, we are happy that there is another possible option out there to cycle through to help control my cancer.  Princess Margaret is a world renowned hospital for treating cancer and we would be fortunate to have this level of expertise and care supporting my treatments.  Fingers crossed that it all works out. Stay tuned. We will give you an update when available. 

You must know by now, that I am just as stubborn and uncooperative as my cancer seems to be. I will not give up! I will not stop until every option is exhausted and we'll keep on pivoting and cycling on. 

Take that cancer!

Richard

One Year BLOGiversary!

Today marks the one year anniversary of My Personal Cancer Journey Blog. I really can't believe that it has been a year already.  To be honest, I really didn't expect it to reach the one year milestone but I am so thankful that it has and that I am still able to write and share posts and updates.

I decided to start this blog to share some of my cancer journey updates with family, friends and anyone else that was interested. It was a way to keep others informed and up to date with my journey as many were asking for updates and news. To my surprise it seems to have touched many of you in some way or another. I continue to be thankful for the comments and notes of support that have followed my blog posts. Words of encouragement, notes of support, personal comments about how a blog post has touched them in some way. These notes and comments mean so much to me and my family. It is so special when someone shares their personal link, connection or story with us about a blog post that we have shared that resonated with them. It continues to amaze me how cancer really does touch us all in some way.

My blog focus has always been on remaining positive and hopeful but also at the same time sharing the truth about this terrible disease. Despite the ongoing ups and downs that this journey presents, staying positive has been my one constant focus areas. I hope that I will be able to continue to share my journey with you for some time to come! 

Thank you all for joining me along this journey. It means the world to me to have you by my side.

Richard

Back to School Thoughts

This week is 'Back to School Week' for students, staff and families. Being an educator myself for over 30+ years, I can't help but think of my education colleagues that have been spending the past few weeks planning, organizing, hiring etc. in preparing for and in anticipation of the start of the school year. The general public doesn't really realize that the weeks leading up to the start of school are always busy and stressful for administrators, teachers and educational support staff alike. I can only imagine the heightened stress and anxiety they are feeling this year with all of the uncertainty, unknowns and possible health and safety concerns that they are facing and will have to deal with over the coming weeks and perhaps months. 

Back to school marks the end of summer and the start of fall. I can't believe how much has changed in education this past year since my retirement and cancer diagnosis. While I have been focused on my personal health struggles, the education world has been turned upside down. This school year will be like no other. Normally the school year has a familiar pattern and flow to it. It is generally predictable and most approach the start of school with excitement and anticipation. I am not sure this will be the case this year. Having responsibility for the safety and security of students can seem daunting at the best of times, but with the possibility of COVID-19 ever lurking, it has been taken to a whole new level. I salute all of you that have risen to the challenge and are working hard to minimize the health and safety concerns for all. You all rock!

Back to school for teachers/administrators is actually quite similar to that of the students. We too get our new back to school outfit and have that nervous anticipation for the first day of school. Most of us have back to school dreams (or nightmares) for a few days leading up to the first day. I know I did. Even now in retirement I am still dreaming about going back to school--when does that end?   

We always would take a back to school photo on our front step of our three kids - bright and shiny, new outfits, new shoes, new backpacks - excited to start a new year.  We still do this today, with just one left in university and looking toward an unusual year of online studies, we still took the requisite "back to school" photo.  I really need to line these all up in a photo essay and see how they have changed over all of these years.  A new project for me!

Last year we started the tradition of gathering up education retirees for a first day of school breakfast. This is my second year joining others for this special breakfast. We celebrate our freedom and wish our colleagues well as they start off a new school year. We also have a little fun by 'rubbing it in a little' that we get to linger over coffee. No "bells" for us anymore! I'm so thankful that I still have the energy to participate in these special moments with my colleagues and friends.

I do miss my job as an administrator. I miss interacting with staff and talking with students. It is amazing how young you remain when you intermix with students on a regular basis. I also miss the bus-y-ness of the school day. My days are now are filled with appointments, tests and treatments.  Working in education has been a wonderful career. I am so glad that I chose that career pathway.  Still I'm not sure, given the current circumstances, that I will miss it that much this year! It will be a wild ride this year for sure. Crazy times.

The one thing I am sure of is that senior admin, administrator and education staff will do their best to ensure a safe return to school for students and staff. By nature, staff are caring and thoughtful and will do whatever it takes to prepare for and adapt to changes needed to continue safe learning for all students. This return to school is like no other. 

Wishing all of my education colleagues all the best this school year.

To my fellow retirees, who wants to go for a (physical distance) coffee? 

Richard

Today's Forecast: Foggy with a chance of forgetfulness

Have you ever been in a fog? Most of us have at some point in our lives experienced forgetfulness or periodic moments of memory loss but when you are a person with cancer, chemo brain can be a real issue at times to deal with. It comes and goes but can leave you at times feeling disoriented and somewhat confused.

I was somewhat relieved to find that the experiences I was feeling, were acknowledged in both the Canadian and American Cancer Societies.  I found the definition according to the American Cancer Society,  described it pretty well and as the following and share it below:

What is Chemo Brain?

Sometimes people with cancer worry about, joke about, or become frustrated by what they describe as mental cloudiness or changes they might notice before, during, and after cancer treatment. This cloudiness or mental change is commonly referred to as chemo brain. Doctors and researchers may call chemo brain many things, such as cancer treatment-related cognitive impairment, cancer-related cognitive change, or post-chemotherapy cognitive impairment. The word "cognitive" refers to the way your brain works to help you communicate, think, learn, solve problems or remember.

Most define it as a decrease in mental "sharpness" and describe it as being unable to remember certain things and having trouble finishing tasks, concentrating on something, or learning new skills. Even though exact causes isn't known, it can happen at any time when you have cancer.

Some use the term 'chemo fog' to describe it instead of chemo brain. I feel that this is a better description of what it is like to have chemo brain. I would describe it as walking around in a state of fogginess. You can be unclear and unfocused. Sometimes I just kind of zone out.  As a person with cancer, these episodes of fogginess can be short ( a minute or two or for longer periods of time). Luckily they don't last too long. I find that for the most part,  I experience 'chemo fog' a day or two after chemo treatment.

Sometimes you forget the small stuff like names, places or what you are currently doing (why am I in the kitchen again)? Your brain is cloudy. Being foggy describes it well. It becomes harder to concentrate and think clearly. Luckily my chemo fog is fairly minor (at lease I think so, you would have to ask one of my family members for confirmation of that). It is generally sporadic, but when it happens is annoying and sometimes worrisome. I usually pride myself on being fairly sharp and alert for the most part.

It can be a bit embarrassing to be forgetful, especially when you temporarily forget someone's name that you should know well. I am the first to admit that I have always been bad with names but this is different. Forgetting someone's name that you know well or see often is concerning. Having chemo brain only amplifies my name recognition issues. 

Have you ever gone to the the grocery store to pick up a few items and return home with everything (including some extra items) but forget to buy the most important item or ingredient? I have. In fact it is becoming increasingly the case. I am in the grocery aisle and trying to remember what the items were again. I now put my grocery list into my phone so that I can refer to it if needed. Come to think of it, LOL, Michelle has been with me for some of these short grocery trips too. I guess it is just another example of sympathy symptoms on her part ( or it could be the lack of consistent sleep too).  

Life is foggy at times. We all can have moments of temporary forgetfulness. Sometimes forgetting is a good thing. I must say that I truly enjoy the moments when I forget that I have cancer! As a family we continue to have a clear focus on what is important, namely our family, creating memories and making the most of each day that we are blessed to have together. There is no fogginess there!

Stay focused everyone.  Keep moving forward through the fog!

Richard