Here we go again!

Determination. Optimism. Hope. 

Here we go again! My initial visit to see if I was a good candidate for the new drug trial at Princess Margaret hospital was promising. The team at the hospital felt that I would be a good candidate for the study. Fantastic! Now I need to go for a series of tests and procedures to determine my eligibility and hopefully begin treatment in the next few weeks. The sooner the better for me.

In my previous posts, Needles, scans and tests oh my! & Hurry up and wait! I talked about the many tests, scans and procedures that I needed to undertake prior to my treatment beginning. Now it is like I am starting over from scratch again! On the positive side, I know now, from experience, what each of these tests are, how they make you feel, so I am more mentally prepared for them, then the first time. Also they are really a 'means to an end' to get started up again on treatment. Time is ticking! I don't want to wait much longer and give my cancer any more of an upper hand.

Travelling to and from the Princess Margaret Hospital and the Toronto General Hospital will require more travel time and patience for sure. I was so fortunate to have my previous treatments so close to home. I will however go wherever necessary to fight on. In these times of increased COVID precautions, Michelle is unable to come into the hospital with me for most of these tests and procedures. She will come as she can - park and wait is our new mantra!  Parking is expensive and hard to find in Toronto, not to mention free shorter term parking is practically non-existent.  Michelle rotates spots (to avoid getting a ticket LOL), timing it just so to pick me up when I am done.  This adds an extra layer of complexity for us, but we will manage through it.  We do miss Southlake!

This year, as a family we decided to pool our money together to purchase tickets for the Princess Margaret Hospital lottery. I have bought tickets in the past on my own but this year we bought a five ticket "family" pack. Hopefully we have one of the lucky tickets. It is great to support ongoing cancer research (especially at a hospital that is helping support my cancer journey) and who knows, we may even win one of the many great prizes available. Perhaps we will win the downtown furnished condo and it will solve all of our commuting issues and concerns. Wouldn't that be perfect. LOL

Wishing you all a wonderful Thanksgiving with your families. For sure things are a little different for all of us this year, and even if we can't all be together under the same roof, we give thanks for family and friends.

I am thankful for my family and friends, and really I am thankful to say "here we go again!".

Richard

 

Standing Tall Through it All

This week's blog comes courtesy of My Michelle.

We have thankfully approached that one year marker of Richard's diagnosis of stage IV esophageal cancer. I say thankfully, because the odds were against us and all evidence was pointing unbelievably, to a different outcome.  I often get asked "I don't know how you do it?".  Well the truth is, we really don't have much of a choice.  To give Richard the best possible chance, and the best quality of life, we have a chemo treatment plan, we have a follow up and testing plan, we have the excellent care of a health care team who are determined to help us get through it all.  Where we do have choice, is how we think, how we feel, how we treat one another, keeping connected with family and friends, and choosing to "stand tall through it all".

Standing tall, is not a new concept for our family.  It has been a value we have tried to instil in our children - encouraging them to stand up for what they believe in, make their decisions and then stand behind them, always be proud of who they are and to hold their head high.  

In a literal sense, it was one of the things that first drew me to Richard.  Richard always has stood tall, with a great sense of posture, always standing up for what and for those he believes in, always proud of who he is and our family. Richard has stood tall during his career in education, with his peers, his students and their families.

Richard has also approached his cancer journey, standing tall.  As his wife, it is one of the most difficult things to watch him go for treatments, supporting him, but not able to make it go away.  It has been worse with COVID 19 restrictions, where I can't even go into the treatments with him or sit by him in the chemo suite to keep him company.  I drive him to and from every treatment, make sure he is as comfortable as possible, that our bedding is changed and ready for his nap when he gets home (nothing is better than fresh sheets and blankets!), and that our home "sparkles and shines" and is as germ free as possible. He always walks into the hospital with his head high, his backpack confidently on one shoulder, and with purpose in his step.   I try to be strong, be his advocate and his comfort when he needs it.  I don't always stand tall, but I try.  I am a migraine sufferer and have found that I've had a few more than normal over this past year.  On one particular day when it was particularly bad, our kids said to me "Mom, you can't get sick.  If you go down, we all go down."  Certainly, more than ever I feel the need to stand tall and be strong, our family depends upon it.

I know we (and I) don't always have to be strong, that it's okay to give in and have a good cry, to reach out to others for a helping hand, and in fact it is healthy and necessary to do so!  Asking for help, and accepting help, helps us all "Stand Tall" and also gives a chance to others to share the load, and we can maybe "Stand Tall" together.

Proud to Stand Tall through it all and together, with you,

Love Michelle

  

Tired!

The title says it all. I am tired. I am tired in so many ways. I am tired of this disease and the limitations that it is creating for me and my family. I am tired of the side effects that are slowly interfering with my life. I am tired of waiting for what is next. I am just plain tired - but I am not giving up.

I am definitely tired of this disease. It has and continues to take away so much from me and my family. We continue to live in a constant state of limbo, and cloud of stress. We can't really plan our future with any great detail or long term timelines. It is hard to live your life or move forward (with hopes and dreams) when you live bound by a four week cycle, and this has been compounded by COVID 19 and restrictions. With treatment needed weekly, you can't venture off too far from home.  With treatment needed weekly, it also takes a few days before I feel a little like doing anything.  With treatment in a four week cycle, it is also hard to plan too far into the future, when you don't know whether or not your decreasing health and well-being will get in the way.  At the moment we live in "Carpe Diem". We need to really seize each day as it comes.  We need to re-energize, and do things, but I am just tired.

I am also getting tired of my side effects from taking my medications. I really shouldn't complain because compared to most, I think that I have few major side effects, but they are beginning to wear me down. But maybe that's just a reflection of how I feel today, as I write this blog.  One new side effect I am experiencing this time around, is visible is hair loss. I am starting to lose my hair. I am not really a vain person but I have always kind of thought my hair wasn't too bad! Losing it is definitely disappointing and is really the first visual sign of my disease. It is coming out very slowly (which is good), but there is a steady stream of hair loss. With my new haircut, it is not really that noticeable (at least I think so) but I am definitely shedding! My scalp is itchy too and I am constantly touching my hair according to my family, which isn't helping the hair situation at all.

Another side effect is my fatigue. My new chemotherapy meds have definitely made me more tired and less energetic. I am taking more frequent naps during the day. I used to love taking an afternoon nap on the weekend but now my naps seem annoying and far too frequent. This fatigue also seems to be taking away some of my enthusiasm. I am at times less optimistic and hopeful. Hopefully this is just a short term issue. Maybe the tiredness is wearing me down and making me feel blue, but I am just tired. 

On the positive side, because I do believe there is a positive side in everything, in just a few short weeks I will reach the one year anniversary of having being told I have stage IV, esophageal cancer. Although this doesn't seem like something to celebrate, this is really an amazing feat. We are happy and thankful that I will most likely be able to reach this milestone (considering the fact that my doctor only give me three months to a year, if we were lucky). I am beating the average. I am an outlier! I can still enjoy most of what life can offer. This is what we had hoped for. This is a good thing!

I am just tired,  but I am just as determined.

Richard

Just keep swimming, swimming, swimming!

Throughout my educational career I have always tried to highlight and champion the ideas around growth mindset, perseverance and grit. I truly believe that a sincere focus on these traits can help to support goal achievement and overall success in life. I have had many opportunities to witness first hand examples where this has been the case. More recently I have witnessed one of the best examples of the power of perseverance, grit and determination right here at home, through our daughter Sophie.  

To me, Sophia exemplifies the qualities of perseverance, grit and determination. She has definitely inherited some of this from her mother and I, but she has taken it to a whole new level!  Daily we witness her efforts to set goals, organize, prioritize and execute on her plans. Sophie sets high standards for herself and plans out exactly how she is going to achieve and maintain these goals, and utilizes bullet journalling extensively to stay on track. I am truly impressed with the time Sophie spends detailing her daily, weekly and monthly goals and objectives through her bullet journal.  

Recently Sophie started up a small, online business called Opal and Fern Designs (sorry proud father moment here!) which features artisan bullet journalling stickers and other items that she herself crafted and uses in her own daily journalling. To me this has been a perfect pairing of her talents! She is using her artistic ability and her focus on goal setting to her advantage.  I believe that her business serves multiple purposes. First it provides an outlet for her creativity. Sophie has always been doodling, drawing and creating art from an early age. She loves the Arts, hence taking Art History as one of her majors in university. Secondly, it provides a small income for her. She has been saving up money to attend a university class in Venice, Italy. (currently postponed until next year due to recent flooding and COVID-19). Finally, I personally feel that starting up and maintaining her online sticker shop has offered her a distraction from our current family situation. Sophie has always been a quiet, shy person who avoids conflict and uncertainty. Her intense focus on her university studies and her sticker company allows her a way to express herself artistically, a way to get out of being stuck in neutral, and an escape from our current family reality.

I am so impressed with Sophie's ability to maintain focus, to persevere, to strive to achieve her goals and dreams despite all of the obstacles and barriers that have recently plagued our family. Regardless of our current circumstances, she continues to be laser focused on her university studies. She has a clear plan for her future and is working hard to achieve her goals. Starting up a small online business while maintaining a high calibre university level is an amazing achievement. We are all so impressed and proud of her.  She is our superstar!  We all get very involved in her success and her business, so excited when we see a sale come through on her ETSY shop, fascinated to see the global reach of her business, and all have tips and input - some she has welcomed, others not so much lol!

I continue to worry about her and the rest of my family as the effects of my cancer diagnosis and prognosis continue to take a toll on all of us, not physically but mentally and emotionally. It has been difficult for all of us. Each family member is trying to deal with it the best that they can in their own unique ways. Sophie seems to have found a way to cope with it through the Arts (her passion). She has even got our whole family painting on canvases in our kitchen during this time of isolation to keep us busy and help distract us. 

Like Sophie, I too try to find ways to distract myself and continue to try to maintain positive momentum. My personal determination to stay strong and persevere while dealing with my cancer journey is what I believe has kept me going all this time. Despite the many setbacks and obstacles that have come my way over the past six months I try to push through them and keep going. 

As both Michelle, and Dory from Finding Nemo keep saying,  "Just keep swimming, swimming, swimming"! 

Richard