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

 

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

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

My Radiation 101

As I have said previously in my blog, each cancer patient's treatment plan is unique to them. My team of doctors decided that I would begin with 10 consecutive rounds of radiation followed by chemotherapy.

The introduction to the radiation plan actually began immediately following our conversation with the Medical Oncologist confirming that I had esophageal cancer. Just minutes after receiving this horrific, life altering news about my diagnosis we began a series of meetings with the treatment team which consumed the rest of the day. I guess we shouldn't have been so optimistic and parked in the two hour zone! 

We first met with the Radiation Oncologist to discuss the plan for radiation. Next we met with the drug reimbursement specialist, to confirm that we had insurance to cover all of the drug costs. This was followed up with a meeting with the dietician to check my weight and review my eating plan. Finally we were sent downstairs to have pre-radiation orientation. We watched a short video on what to expect and what to prepare for. The radiation schedule was set to begin in one week. We were very pleased with the speed at which the treatment was going to happen but that was a long, tiring and emotional day for the both Michelle and I. We had a lot to process!

I had always told myself that I would never get a tattoo. I don't like them and didn't like the thoughts of having something permanently inked on my body. No offence to those that have tattoos. To each his/her own! That all changed with my cancer diagnosis. I was told that I would need to have four small tattoos placed on my chest in order for the radiologists to properly aline the radiation rays. As this really wasn't an option, I agreed to the four tattoos. That's right, I got four tattoos in one day! Move over David Beckham and Justin Bieber, there is a new bad boy in town! Did I forget to mention that they are only the size of a pin head! They still count as four tattoos though.

Radiation at first seemed scary to me (as I was picturing the CT scan and the MRI scans that I already had) but honestly after the first day, it was actually relatively quick and painless. I was in an out in less than half an hour at each visit. 

The daily radiation routine includes, checking in at the registration desk, changing into your hospital gown, wait to be called in, enter the room, lay on the bed with your arms above you. They turn off the lights and the radiologists them align the lasers with your four tattoos, take measurements to adjust to ensure the all is in alignment. They ask you for your name and birthday at each visit (I guess to ensure that the right patient is being treated). Finally they turn back on the lights, turn on some music and then leave the room to begin the process.

There are two passes of the machine that take a 360 degree rotation around your body. The first I have been told is to ensure that all is good and that everything is in complete alignment. They take a quick scan to compare to the day before during that first pass. Any minor adjustments are made remotely and then you wait for the second pass of the machine. 

On a few occasions that second pass seemed to take a lot longer than over the previous days. Your mind starts to wonder. What is wrong? Is the machine not working? Is the alignment not right ( I don't want radiation in other areas of my body).  Finally the machine boots up and the second pass begins. After I asked, was everything ok? Why was the second pass delayed? Happy to hear that they were actually in discussion with a student radiologist, explaining the process and steps to them. Being an educator myself, I had no problem with this on the job training support.

As I had done with the MRI and CT scans, I found a focal point to ease my mind during the process. A smear on the ceiling, a word or number, whatever it took to take my mind off of what was happening at that moment. 

Medication was prescribed for any possible side effects of the radiation. Luckily I made it through the 10 days with no side effects. One positive to hold on to!

On the final day I received a certificate saying that I have successfully completed my radiation. Not a certificate that I will proudly display or add to my professional portfolio, but glad to have one more step behind me. 

Richard