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

Take a Deep Breath In - Hold It - Breathe Out

SCAN-xiety 3.0

Well here we go again! It is time for another CT scan to determine if my latest line of treatment is making a difference or not. You may recall in my previous blog posts SCAN-xiety & SCAN-xiety 2.0, my track record for receiving positive results has not been good. This brings forth additional anxiety each time leading up to the  test and waiting for the results. As the date of my CT scan draws closer our worry and fear increase proportionally. Many questions continue to swirl around in my head including:  will this time be different? will I finally get some positive news? has my new treatment made any difference at all? have all these tests, overnight stays at the hospital been worth the effort? 

I really did not expect mental health to be such a key factor in my cancer journey when this all started, but after you are diagnosed with cancer, your emotions run wild and are easily intensified. As Michelle mentioned in her blog post Our Life is a Rollercoaster, we have gone through every emotion imaginable from anger, frustration, fear, sadness, surprise, despair and hopefulness to just to name a few. The twists and turns of a cancer journey make life a living drama. It is not a ride we asked to be on but we are buckled in for the long haul and are ready to face all ups and downs and twists and turns that cancer brings our way. 

The stakes of these particular CT scan results are really high this time around because they will indicate whether or not  my treatment is making a difference. It will also indicate continuation or perhaps topping of my trial.  The CT scan review meeting with my oncologist is already set for early next week so at least I will not have a long wait to know. This is a small comfort because the emotions and worry set in during this waiting period for all.

Our hope is that this treatment is actually making a difference and that I am slowing down the spread and growth of my active tumours. This was the hopeful outcome of joining this trial in the first place and this is the message we hope to receive next week at the post CT scan meeting. I think that we deserve it. After several disappointing CT scan outcomes we are due for a positive one this time around. I have been following every protocol and attending every procedure, appointment and treatment without fail. We must reap the rewards of this commitment at some point, right?

Regardless of the outcome of the meeting next week, we will not give up! Giving up means admitting defeat and that is something I/we just can't do. I will do whatever it takes to keep moving forward, to keep as healthy as possible and to live my life with my family and friends. If this trial, is not working we will look for another one. There is always hope, there is always a possibility and least that is the the way we see it. 

Like the instructions during the CT Scan..... we need to take a deep breath in, hold it, hold it, hold it and then breathe out, while we wait.

" When you have exhausted all possibilities remember this, you haven't." ~ Thomas Edison

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

Our Life is like a Roller Coaster!

This week's blog comes courtesy of My Michelle. 

As we navigate through this crazy journey we are on, there are no better words to describe our life right now, other than to say "life is like a roller coaster".  We  seem to circle around and around, with dizzying climbs and what feels like free falls, only to start to climb again. We go up and then we go down and each ride seems to get bigger, faster, more complex and scarey.

Richard has shared over the last few weeks that he has been off treatment, as we have been tested and biopsied and explored clinical trial options. I say "we", because honestly, although it is him that is the one being tested, I swear I feel almost every one.  We had been going back and forth into Toronto for various tests, not the least of which was a late night CT scan.  Who knew they would do these procedures late at night for non emergency patients?  I was driving him home after the procedure and we were heading up the DVP,  both tired and in our own thoughts when he quietly said to me "how did we get here?".  I knew he didn't mean literally here on the DVP, but rather how we had reached this moment and having to deal with this in our lives.

Unfortunately our week didn't start off well as we got "the call" that Richard screened out of the clinical trial.  While we were disappointed, we had previously talked as a family about how this was a possibility, how we were concerned with Richard being off chemo for a month and our need to have that conversation with the oncologist and to get on with the next steps.  Despite knowing it was a possibility to screen out, we teetered at the top of ride and then we definitely felt like we were in a bit of a free fall.

Within minutes our phone rang again with a call from his team at Southlake, appointments and infusion times were set with the next line of approved care being booked.  The free fall  slowed and we felt somewhat reassured that there is a next step for us, that there is a plan and there are still treatments that can be taken.  

Richard looks and feels very good, although tired, but honestly who wouldn't be!  Of course we are very worried, but he is pumped, he is determined, he is ready to get back at it this week and show that cancer who's the boss!

So here we go, back on the roller coaster, in that front car, hearing that click-click-click as we climb this next challenge on our journey, me white knuckled and holding on, Richard with his hands in the air and away we go (again)!  

That's how our life is right now, a roller coaster ride.

Just hold on!

Love

Michelle

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

SCAN-xiety 2.0- Unwelcome News

Previously, in my blogpost entitled SCAN-xiety, I talked about the rollercoaster ride cancer patients and their families go through regarding tests and scans. In that post I described the intense emotions that each test cycle creates for me personally and for my family. It all starts with the worry and wonder leading up to the test. Followed by the anxiousness on the day of the test and finally the concern and the dread of the possible results or outcomes from the test. I must say that waiting for the test results is definitely the most challenging part. Hence the term, SCAN-xiety. 

Last week, I had my regularly scheduled CT scan (which I have booked approximately every three months to keep us and my medical team up to date on the progress of my treatment). It was, like previous scans, fairly routine except perhaps for the new hospital protocols that are in place due to the ongoing COVID-19 issues.  The CT scan itself takes about 15 minutes. The machine pushes you into a cylinder tube that is rotating. It tells you to hold your breath for five seconds (it seems longer than that).  The platform then moves you slowly out of the tube (while you are holding your breath). This happens a few times. Fairly painless overall, except for a few slightly claustrophobic panic moments in the CT scan tube perhaps.  And then you wait! Waiting is painful, not literally but emotionally. 

Usually you wait until your next scheduled appointment with your oncologist to get the scan results however a few days after my scan I received a call from the hospital to indicate that my oncologist wanted to book a phone consult with me.  This was a week earlier than anticipated to discuss the results, which is not usually a good sign. Our family's anxiety levels immediately starting rising after getting off the phone. 

Unfortunately my early phone call was not good news. My most recent CT scan results had shown that my first line of treatment, which had been successful up until this point, was no longer controlling the spread or stopping the growth of my disease. My oncologist indicated that it was time to move onto the second line of treatment options. 

With our medical team, we are now in the process of determining our next steps, which will definitely include a new round of chemotherapy, a new cocktail of chemo drugs to fight this disease.

However disappointing and discouraging this news is for me and my family, we fight on! It is very hard to reconcile this news, with outward appearances and how I feel overall.  My energy level is good, my appetite is good, my outlook is hopeful and I continue to do most all of the things I normally would be doing.  We stay positive and we hope and pray for better news to come. 

We will not give up!  

"Being challenged in life is inevitable, being defeated is optional" ~ Roger Crawford

Richard

SCAN-xiety

Last week I went for my second maintenance treatment at the cancer centre. After I had made myself comfortable in the infusion chair, the attending nurse asked me when was my last visit with my oncologist? I quickly explained that I had just visited him last Friday to get the results from my recent CT scan. She followed up with a question about the CT scan results. She was very careful to say it in a way that would be supportive regardless of my response (either positive or negative). Luckily I was able to give her a positive response this time. My recent CT scan results indicated no new growth of my tumours. This was, as I was told, good news. My oncologist was pleased with the results and booked a follow up CT scan in three months time.  

The nurse then went on to tell me about her friend, who had breast cancer and her reaction to these tests. She explained that her friend used to call the lead up to getting these test results as having "SCAN-xiety". This immediately resonated with me. This was so true. 

These scans are meant to give us an update on the progress or lack of progress in fighting this disease and yes, they can be very anxiety inducing. You never quite know what the results will be and the waiting time between the actual scan and seeing your oncologist about the results can be a nerve racking time. 

I believe (if my count is accurate) that I have had four CT scans and three MRI's since being diagnosed with cancer in August, along with a series of other tests and procedures. I previously talked about these tests in my blog post, Needles, Scans and Tests Oh My! For the most part, the results have been fairly positive but let me tell you that slow walk to the cancer centre that Michelle and I have taken several times over the past few months have been stressful and anxious each time. As I have stated, so far the results have been relatively positive (since the initial results that were a devastating blow to our family). We hope they stay positive for a long time!

New Anxiety

A new anxiety is fast emerging in our family and I am sure in your family as well. We are all now concerned about the Coronavirus. This is scary new territory for all of us but especially for those of us with lower immune systems, who are at higher risk according to Health officials. As a family, we are asking ourselves: Should I/we be going out in public? Do I/we shake hands with people?  How do we react when people lean in for a hug? Maybe with the social distancing request from Public Health, this will not be an issue for me. Do we need to join the frenzy and stock up on toilet paper and canned goods too?  Should I be going out, should I go out to restaurants, can we go to the mall with the concerns about large crowds? 

I guess for now we will take it day by day (as all of us must do) and make informed decisions about what is in the best interest of our family's health. I have to admit that these are scary times. 

We are trying to remain calm and stay positive. We hope that you are able to do the same.

Keep calm and hand wash on!

Richard