PIVOT! SEIZE TODAY!

My drive down the Don Valley Parkway to Princess Margaret this week was extra distracting and emotionally charged. This particular drive down was not for treatment, tests or blood work but rather to discuss the recent results of my latest CT scan. My mind was racing the entire way down. As I drove closer towards the hospital, various scenarios were playing around in my head.  I was mentally preparing myself for all possible outcomes for my scan results. I was thankful for the radio that at least offered a few moments of distraction from my racing thought process. The heavy traffic flow also helped to distract me from my emotions as I needed to focus on the stop and go traffic at times. I was also thinking about and thankful for the messages of support and the "I'm thinking of you" texts that greeted me when I woke up that morning and throughout the day. I am so fortunate really.  My mind kept returning to the line of thinking that surely this time the news would be different. 

WAITING ROOMS 

Adding to the anxiety and stress was the time spent waiting in the waiting room. I don't know about you but waiting in a waiting room just adds to my overall nervousness, especially when you are waiting to get some important news. I wasn't even able to drink the dark roast coffee that I had just purchased for the wait. As I looked around the waiting room I couldn't help but notice all of the faces of the other patients. I couldn't help but wonder if they too were waiting to hear important, possibly life changing news, like me. Thankfully the t.v. screen offered a few more moments of distraction for me but the non-stop news channels' coverage on vaccines, issues in Long Term Care, long lineups at pop up clinics, international cases of COVID 19, were not exactly soothing or relaxing, I must say we all could use a little good news these days!

Soon I was escorted to the second waiting room. You know the  one, that inner waiting room when you are left alone behind closed doors in a small examining room waiting for the doctor. I don't know about you, but that inner waiting room is very intimidating. You can hear people talking and moving about and you don't know what is happening or when the door will open and the doctor will just pop in at any moment. You can't help but scan the room because let's face it, there is nothing else to do. Often there are posters warning you of signs and symptoms.  Again, not exactly easing my mind!

ALL FOR NOTHING!

To get to the point, my CT scan results again were not favourable. My oncologist walked in, we put Michelle on speaker phone, and she immediately put some photocopies of scan results on the desk. It quickly became clear from the images and her explanation that my cancer tumours continued to grow (at a fairly rapid rate I might add) and that it was her conclusion that this new trial was not working. She then indicated that my participation in the trial would need to be stopped. Devastating news for sure. All of those tests, procedures and time that I had spent in the hospital overnight did not pay off in the end. My cancer continues to advance and precious time continues to tick on. I must say that it was worth the shot. It could have made a difference. Still very disappointing news for me, Michelle and the family, that is for sure.

PIVOT!

We are now back in limbo again, waiting for another possible trial to open and be a fit for me and my type of cancer. The options are narrowing considerably now.  I have a scheduled meeting next week to see what options, if any, are available to me. I gave myself two days to have a pity party and am now I am back to focusing on the positives. I am still feeling good, I am still able to fully function, I have my family and friends supporting me. Hopefully things will open up soon and we can enjoy life as we knew it, once again.

My journey has taken many twists and turns. There seems to be more downs than ups lately but we will fight on. I am not a typical patient and I have been an outlier in so many way thus far.  So as always, we have hope.

Thanks for your your continued words of encouragement and support. I truly appreciate it. Your kindness is not forgotten.

Carpe Diem! Or as we now like to say, Seize Today!  

Richard

Not Playing the Waiting Game!

I was going to call this week's blog, The Waiting Game, mostly because that is what our/my life seems to be right now, a never ending waiting game! Waiting for test results, waiting for next steps in my treatment and waiting for this lockdown to be lifted so life can return to some sort of 'the new normal'. Most of all we are waiting to check off more of our family bucket list items that are currently on hold. I guess we are all experiencing our own personal waiting game. This week, when I was discussing possible blog topics and titles with Michelle, like we do most weeks, she quickly pointed out that despite the waiting game that we are on, life still goes on, and despite cancer touching our lives, we've all made conscious efforts not to wait and to keep moving forward.

She reminded me that we really do have so much to celebrate and be thankful for, even during these dark times. While we feel like we are 'stuck in neutral' , life continues on for better or worse. She was quick to remind me of all the "better" moments that have been happening in our family's life over the past few weeks and months. It really helped to refocus my thoughts and reflect on some of the good milestones and positives. Sometimes we can get lost in a never ending cycle of negativity and disappointments, focused on cancer and treatments, and waiting for the next best thing, or any thing really, to happen. So with this in mind, and with a refocused attitude, I have to share that we actually have been doing more and we are not always playing a waiting game!

Over the past few weeks we have many instances to celebrate and be thankful for the blessings that have come our way. Michelle just accepted a new global role with her company.  She has worked hard for this and we are so very proud of her and I am so glad I am here to share it with her. Despite our personal family obstacles and support she gives me, she has remained strong and continues to be focused on loving us but also providing excellence in her career.  It's not easy and I know how worried she is about everything, but she keeps going.  Jonathan has completed his university degree and is exploring a variety of options that will use his skills and talents. He recently has been doing some stock footage/time lapse 4K video and posting it for sale.  Not easy to keep moving forward, when much of the film industry has slowed, and just when you are trying to launch.  Josh continues to move ahead in his job and at the same time he is exploring further post university studies. Not easy to keep working and advancing during a pandemic and we are so proud of him.  Sophie, our youngest, is a candidate to graduate with distinction from Queens, and has just completed her application to a Masters program. Her little sticker shop "Opal and Fern" just celebrated its first anniversary and has generated over two thousand item sales in its first year. An amazing achievement. Not easy to keep excelling at university and launching a business, when I know how worried she is about me, when she should be just enjoying her university years, but she keeps on reaching and we are so proud.  Even I have kept moving forward.  On a personal note, I supported a colleague in writing an article for the Canadian Association of Principals journal focused on leadership during the pandemic, was named as an author and it was published this month. This is one more  bucket item that I can cross off the list!  

Other positives include the health of my family remains good (except for me of course). We are generally happy and are managing/coping pretty well during this pandemic. Despite the constraints, we seem to be navigating it pretty well (even with five adults under one roof) at least from my point of view. Our little Lily continues to be the bright light for all of us and we just adore her. What a wonderful addition to our family.  

Michelle is right, we aren't  stuck in neutral, life goes on, we go on, and we need to appreciate these moments, the effort and celebrate all along the way!

No more waiting!

Richard

Back to the Drawing Board......

Well we got that dreaded phone call again! This week my oncologist called to share the results of my most recent CT scan. These scans are regularly scheduled on a quarterly basis to keep track of the progress/lack of progress of my cancer treatment. You might remember that after my last CT scan, we got a call from my oncologist a day later with bad news. He regrettably explained that my current treatment wasn't working to halt the growth of my cancer tumours and therefore this  line of treatment would have to be discontinued and I was started on the third line of treatment option, or what we affectionately called "Plan C". He indicated that this was the last line of defense that they have available and approved to deal with my cancer. With it came the return of 'bottle buddy', the PICC line back in and bi-weekly trips to the chemo suite! We'd been on this path for about 3 months, and it was time for another scan.

This time around we got no early phone call after my CT scan. This had to mean that this was good news, right?  I was wrong! It was not good news.

On the scheduled call, he indicated that the third line of treatment I was currently on was unfortunately providing mixed results. Although most of my tumours remained stable, the tumours in my liver were actually growing. Not by much, but they were continuing to grow. This meant that this line of treatment wasn't being successful. It was not doing its job.  

Disappointing news for sure and very upsetting for our family. What was next? Was there a plan D for me? This third line of treatment was considered the final level 

of defense for esophageal cancer.  What I have going for me, is that despite what the CT scan is showing, I feel pretty well and functioning as normal.  But no doubt about it, cancer in your liver is not good news. I have once again been referred to the Princess Margaret Hospital to seek eligibility in some newer and earlier phase cancer clinical trials that hopefully this time I will qualify for. Our hope is that there will be one that is safe, appropriate for me and has some promising results. Fingers crossed.

I guess I should consider myself lucky. Most patients with esophageal cancer don't make it this far or for this long. I am truly an outlier! This was our hope and dream. I guess we will now need to be  trailblazers too!  With persistence, a positive attitude, the love and strength of my wife and family and just a little bit of luck, I will continue to be a positive outlier! 

Staying positive, staying hopeful and planning to pave a new trail for myself and others to come! 

Thank you for your continued care and concern. It is so much appreciated.

Plan D, here I come!

Richard

Waiting!

Waiting is hard for all of us. We spend a great deal of our lives waiting. Waiting in line, waiting for others, waiting for important dates and events to come up. Sometimes the anticipation of waiting is exciting and even an adrenaline rush, however when you are a person with cancer and waiting for test results and next steps in your cancer journey, it is not like that at all. It is worrisome and draining. 

As I wrote in my previous post, Hurry Up and Wait, waiting is just a part of life as a cancer patient. You need to build patience. As a generally 'hyper' person, this is something hard for me to do but I have, over the past year, become better at waiting. 

There is nothing that I can really do to change it. This is my current state of affairs. I am currently anxiously waiting for the doctors to review my tests and procedure results and then get back to me with next steps. 

The problem with waiting when you have terminal cancer is that you have a finite amount of "wait" time available! Each day you wait is one more day for the cancer to grow. I have been off chemo now for a full month. My worry is that my tumours will start to grow again or are already growing! I need to get back on treatment as soon as possible. Time is a precious and a limited commodity for me and my family.  Time is of the essence!

Our hope is that the results will be favourable and I will be a good candidate for the trial so we can get started on it A.S.A.P.  If I am not a good candidate, I will them return to my oncologist at Southlake and see what other options are available to me. Doing nothing is not an option for me.

But for now, I'm still waiting, .....for just a little longer.

Postscript

I really enjoy reading the comments that people leave on my blog. They tell me that others are connecting with the topics and relating in some way to my content. It always puts a smile on my face to read them. This past week I received a comment on one of my blog posts entitled Here we go again!, that I have to acknowledge. It was from a former student of mine (who is now in his mid to late thirties I would guess). He was one of my students way back during my first few years of teaching. It was definitely a welcome surprise and so touched me that he would take the time to read my blog and comment about what a difference I had made in his life. Wow! Just wow.   

This reminds me that we need to take the time to let others know what a difference they have made in our lives. These small gestures, take just a few minutes, but can make the world of difference for the person receiving them. 

Consider taking a few minutes and let someone know how they made a difference in your life today! You will not regret it.

Richard

Hurry up and Wait!

One thing is for sure, you need to be patient being a cancer patient. A great deal of time is spent waiting. Waiting for appointments, waiting for results, waiting for doctors and waiting for next steps. Being a 'get it done kind of guy', this is very difficult for me. Sitting in many different waiting rooms over the past few weeks, you can see others also patiently waiting. As I sit there I think to myself- Why are they here? Are they a patient or a caring support person? What type & stage of cancer do they have? What was their life like prior to their cancer diagnosis? What would they be doing if they didn't have to be here?

Most of us sit in silence waiting for our name to be called. There is an eerie silence. I find it difficult to strike up a conversation with others who are also waiting. What would I say? Will I offend someone? I'm not even sure that I would want to talk about my own journey out loud with others. As I look around the waiting room I get the sense of melancholy. It is as if all of us sitting here are frozen in time. Our lives have suddenly been put on hold and we focus on our individual cancer journey. And we wait!

Don't get me wrong the medical professionals are trying their best to keep on schedule and reduce the amount of time that we have to wait. I can imagine how difficult is must be for doctors, nurses and other health care professionals to meet with families, share results and updates. You can't rush this. Each family deserves the time they need to ask questions and understand what is happening every step of the way.

Waiting for news and outcomes is the hardest of all. Tests results take time and sometimes the time between the test and the sharing of results can seem like forever. Too often lately my results has not been positive. Despite this, we try to remain positive.

As a cancer patient or a family member of a cancer patient, we need to be patient. In most cases it is hurry up and then wait.

Richard