What a Difference Two Weeks Makes!

Well thank goodness I had already prepared the 100th blog and only had a few minor changes and edits or most likely there would not have been a blog ready for last week's 100th edition. Let me explain further.

We have been planning a family vacation for some time now and last week was the week! We had booked one beautiful week at a cottage up in the Haliburton Highlands outside the town of Bancroft. We were all looking forward to it, time away from home, getting back to nature and hopefully some time to take our minds off our life circumstance and just relax and maybe get out on the lake. The weeks leading up to the vacation did not look promising as my aches and pains did not provide me with my comfort and we worried that I couldn't make the car ride and the fact that we would be two and half hours away from the larger hospitals. Michelle even asked if we should postpone or cancel but we make the decision to continue on (we could always turn back or come back home if needed), besides there was a small hospital in the town of Bancroft that we could get to. It would be all right, but I knew she was uncomfortable with the plan. We packed up the car (to the brim, I might add) and made our way. Josh and our dog Lily stayed home because he had to work and we knew Lily would add extra stress at the lake. Josh would be joining us later in the week. 

Michelle drove us all up to the cottage and we made it there in record time. I started to get chills and the shakes in the car ride up (thank goodness for Lily's blanket that we found in the back seat) , but it was a very hot day and we had the air conditioner on full tilt, especially so it would reach Jon and Sophie in the back seat.  We didn't think too much of it, because Michelle was also cold in the car, and thought perhaps it was the A/C.  When we arrived, I did what I could to help them unpack the car, but still felt chilled, so I went straight to bed. I kept saying how cold it was in the cottage, but that didn't make sense as Michelle and kids were hot, and did not find the cottage cold at all.  

I developed a high fever on the first night there, but it came down with tylenol and advil.  Michelle and the kids wanted to pack up and go home, if it wasn't for my stubbornness, I think that is what we would/should have done.  But to be honest, I downplayed it, and said we should try to stay. The fever did go down on Tuesday and we spent some lovely time during the day down by the water (although I did spend most of the day in bed too). I was feeling warm Tuesday night, my temp was just under the fever threshold of 38, but clearly something was not right and at 2 am, Michelle had the kids packing up and on standby ready to go.  She had already scoped out the nearest hospital, but again the temp came down hovering around normal, and I wanted to wait. Actually I was adamant that we wait. I did not want to ruin the family trip.  By Wednesday the fever had returned sitting at the threshold of 38 (it was heavily raining and wet), Michelle came into the room and quietly said, we can be packed up and ready to go in 5 mins - I need you home and in Newmarket. Bad things don't just go away, fevers just aren't a symptom to be ignored.  I finally agreed, and we packed up and came home. To be honest, I just wanted to crawl into my own bed.

After consulting with our medical team  we headed to the emergency department as we were getting quite concerned about what was happening. Princess Margaret Hospital was calling ahead to ensure they knew my medical history and that we were coming.  To make a long story short, after spending fourteen hours (that is not misprint, 14 hours - 13 of which were in a chair and crowded in a waiting room in the ER), I was finally admitted to the hospital.  For 1 hr of the wait, we had an exam room with a bed in it, and there was no way Michelle was going to let them kick us out of the room until I was admitted!  We were able to turn the lights down low and I was able to stretch out and have an ice pack, which helped a lot to make me more comfortable while we continued to wait.

They have done a series of tests during that fourteen hours and now that I've been in hospital as well as running a cocktail of antibiotics. The news that we were hoping not to have to hear (for quite a bit longer), were finally being spoken to us. The tumours were continuing to grow.   I would be moving on to palliative care focused on pain management rather than fighting the disease itself any further.

I am still in the hospital for a week now, trying to find the correct combination of painkillers to live as comfortable a life as possible and make sure the antibiotics are fighting the infection.  I want to be at home, and for a long as possible.

As devastating & disappointing as this news is for me and my family, we can still be proud of the battle we gave. Like so my people  before us and so many long after us, it is worthy to try and fight it, there are many medical advances, but cancer is an equally worthy opponent. 

We are now in the process of palliative care and with what this  means for me and us, as a family. In the weeks and hopefully months to come we will shift the focus of our blogs in this direction.

We hope you will join us!

Richard

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

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