1st.... 2nd.....3rd.....

Well I had my 1st Port-a-Cath installed on Monday this week. I  have been hoping for some time now to have my PICC line removed as it is quite annoying. I also got rashes and itchiness due to a reaction to the dressing used to cover it, nothing seemed to really help it. Having a port-a-cath will also provide me with so much  more independence. With the PICC line I couldn't have a full bath and even had to have Michelle help me to cover it when showering.  It will also mean that I will be able to go swimming too! Our pool opening is set for early May so I will be ready to go by them. For those of you wondering, a port-a-cath is an implanted device which allows for easy access to the veins:  for taking blood samples, giving intravenous fluids and medications. Although I wish that I didn't need either, I am happy that this option was made available to me. This procedure provided short term pain for long term gain!

This week also means my 2nd biopsy in as many months. You might recall that I recently had a biopsy done. Newer samples are now needed for the study that I am on. Although a fairly non invasive procedure, it still means going under sedation and can have some complications. 

For the record, I have been in three different Toronto hospitals all in one week! Toronto Western on Monday, Princess Margaret on Thursday and Toronto General on Friday. Amazing really. We are so fortunate and lucky to have a world class medical system right here in Ontario. That is why I am supporting both Southlake Hospital through Richard's Roadrunners Virtual Challenge and have supported Princess Margaret Hospital through the purchase of a few of their Home lottery tickets. Who knows, I may be the lucky winner of both excellent care and treatment as well as a win a new home, car or cottage!

Well believe it or not this week already marks my 3rd week of treatment in the new trial. So far so good!  I had to spend another overnight stay in the hospital this week and will hopefully only need to do that one more time. I am pleased to say that I seem to be tolerating the treatment quite well with no immediate side effects to report. Another CT scan is now booked for the end of April. This is already starting to create some SCANxiety.

1st...2nd...3rd, sometimes it feels like it's three steps forward, and two steps back, but I hope through this journey, that I will at least be a step ahead of where I used to be. 

Richard

And so it begins again.......

Well that was fast! After waiting for what seemed like an eternity, I got accepted and have now started on a cancer clinical trial this past week. This new trial has produced many emotions that range from both ends of the spectrum:  hopefulness and trepidation. I have a lot of questions such as: "What have I agreed to?" "Will this be safe?" "Will this have a positive, negative or no impact in slowing down the growth of my cancer tumours?" With limited options comes more risky choices and decisions to make. "Will it be worth the risk?".  As Michelle had mentioned in last week's post, we enter into this with hope.

I must say that I have never visited a hospital so often and in such a short period of time in my entire life!  Last week I achieved a new personal record, five days in a row. To be honest,  I must admit that I have spent the better part of my life trying to avoid hospitals as much as possible. Hospitals have always kind of scared me. This is probably due to the fact that except for the birth of my three children, going or rushing to the hospital has usually meant that someone in my family was hurt or was dealing with a significant medical issue. Hospitals to me, signified concern, worry and fear. That really hasn't changed much for me now that I am a frequent "flyer" in hospitals, but I can now add hope, gratefulness and a sense of awe to this list. I am so very thankful and fortunate that this opportunity has presented itself to me. I am also so grateful for the hospital staff, who have been very compassionate and caring. I am in awe of the wonderful facilities, equipment and level of care that have been offered to me thus far. Simply amazing!

I have said this before but I must say it again, I really had no idea or realization of the vast numbers of people that are dealing with cancer. I am constantly shocked at the numbers.  I can literally see with my own eyes the impact that cancer has on so many others, not just myself. One quick example to share that highlights what I mean.  There is a large, beautiful waiting area  centrally located for patients to wait for their turn to draw blood. The startling part for me is the fact that this waiting area is so full and busy that they need to use the 'deli counter' number system to keep things running smoothly. You check in at the reception desk and wait to see your number come up on the big screen and then proceed to one of over a dozen blood technicians working simultaneously. Yes you read that right, a steady flow of patients getting blood work done from 7 a.m. until around 4 p.m. Surprising and scary at the same time! When you have cancer you sometimes feel alone, that this is only happening to you. This is obviously not the case. So many are impacted by cancer. And that's just the patients, with COVID 19 restrictions, family are unable to come into the hospital, so cancer is impacting so many more.

My new line of treatment takes an hour or so to administer but the monitoring process afterwards lasts a full twenty-four hour period and is preceded and followed up with numerous blood draws and checking of vitals to monitor my condition, hence my many visits to the blood labs and to the hospital. At the moment, I don't seem to have any severe side effects, just a few small things that thus far, all seem manageable. I hope it stays that way.  Is it working? Only time will tell, which will mean more tests and biopsies and the good old CT Scan.  All familiar testing ground for me now!

If you risk nothing, then you risk everything. ~ Geena Davis

Richard

In my Shoes

This week's blog comes courtesy of My Michelle. Enjoy!

Every once in a while, Richard asks me to contribute to his weekly blog.  I'm always honoured that he asks me, but equally a little reticent.  I am by nature, a private person, and very protective of our family, but I know that those of you who follow his blog either know him personally and care about him,  are struggling with your own troubles or travelling your own cancer journey and find his words and perspective inspiring.  As you know, while Richard has been doing well,  his cancer has continued to progress and we have made the decision to move into a clinical trial.  A decision that was not made lightly, or easily, but made with hope.

Why is hope so important? Other than the obvious of wishing for a different outcome, I think that hope is important because it encourages that little self narrative that helps make our current situation a little more bearable.  We have to believe and keep doing something.  It's just how Richard and I are "wired".  I also think it's a self protection mechanism as well, because the alternative is to despair, and there is no sense wasting time there!  That's also how Richard and I are "wired", we definitely like to get things done, not waste time and definitely do not like a pity party.

But despite what you "think" and "do" and "hope", sometimes your worries will manifest anyway.  I have trouble sleeping, I can't help it, I can't fix it, it has just become my new way of managing.  I do feel a strong responsibility to help smooth the way to help ensure that Richard has everything he needs to be as comfortable as possible, help find those distractions that are so important to help him keep coping, to find time to ease the fears and concerns of our children at this time when they are also trying to launch and find their way.  I am a nurse and somewhat knowledgable in navigating the healthcare system and able to have the key conversations with his caregivers and I take on this responsibility.  Like caregivers who find themselves in this kind of situation, I do feel the pressure, but  I also wouldn't have it any other way.  He's my Richard, and I bear the responsibility with love.

We were walking a great deal before the snow, ice and winter slowed us down, and we look forward to getting outside more, to get walking. I know that these things all help to tire one out (in a good way), help with getting a good sleep and help with a more positive mood. It seems like it has been a long, cold winter and we are very looking forward to spring, to some warmer weather and sunshine, time together in our gardens and kicking back by the pool.

I started off this blog with the title "In my Shoes" with the intent to share just a few things from the caregiver perspective and dealing with this cancer journey.  I think the title should really be "In Our Shoes" because we are not in this alone - not Richard, not me, Jon, Josh or Sophie - there's a whole extended family and community here with us, and we are grateful for the support.

Wishing you a good night!

Love Michelle

Negative/Positive

Negative- Well my biopsy results finally arrived this week after some delay. After double checking the tumour samples gathered from my liver biopsy, the tumours continue to grow, and my remaining treatment options are limited. More disappointing news for me and my family. Disappointment is something that we as a family are starting to get used to. We will however, as a family, always remain hopeful and optimistic-- but I must admit that our resilience level is starting to take a big hit. I keep asking myself, why is my body doing this to me? Why can I not catch a break? I must officially and publicly declare that I hate cancer!

Positive- One thing that is for sure is that I will not let cancer take away my hope, our hope. We will continue to press on despite these limited options, despite the fact that cancer is winning at the moment. I really want to be here to experience all of the life moments with my family including future weddings, grandchildren etc. There is still so much that I want to be apart of in the lives of my children. Michelle and I have so much more  that we want to do as a couple. If  mental perspective, determination and attitude play a role, I'm drawing new battle lines.  I will not give up!

A new journey/path begins....

My next journey centres around a new drug trial at the Princess Margaret Hospital. I am in the process (again) of having final tests completed to confirm my eligibility in a existing phase one trial. If confirmed, and we have our fingers crossed, treatments would begin next week. It  is unchartered waters, but what else can we do?  I'm not liking the alternative - doing nothing.  The ball is rolling and gaining momentum. Action at least is something, right?  I've never been in a clinical trial before, so at least this will also be interesting.

This new path involves overnight stays at the hospital and intense monitoring and vigilance to watch out for any possible side effects that may occur due to the treatment.  We shall see how this all plays out. My hope is that I will once again, have minimal side effects, as was the case for my past three treatment options and that this new treatment will slow or stop my cancer in its tracks. 

Isn't there a saying something about when one window closes, another one opens?  Well here's hoping that with this negative news, we are balanced off with some positive opportunity and the trial "opens a window" for us.

So we move on to our Plan "E", and as I see it, there's many more letters where that one came from and we'll just keep cycling onward!

Richard