Pain in the @#$% !

Well this second clinical trial treatment is certaining hitting me harder than the first or any other previous treatment really. Hopefully that is a sign that things are working and making a difference! I am tired, irritable and can't seem to get comfortable for any length of time. I am napping more than usual and just don't seem to have the same level of energy that I used to have. 

It has crossed my mind, that this may not be the new treatment at all that is causing this discomfort and irritability, but is an evolution and the progression of my symptoms with time. On the other hand, or glass half full perspective -  perhaps my new treatment is working and is fighting my cancer on the inside and this pain is the price to pay on the battlefield. I am hoping that it is the latter of course and all this discomfort will be worth it -- that it is making a difference and is actually shrinking my tumors. 

One of issues I am having this  this time around is back pain (and well something else we don't often talk about, constipation).  Dealing with the first issue - I don't know about you but next to ear aches, I find back pain  most frustrating as you can't really solve the issue. You can subdue it for awhile but it always seems to come back. It is not debilitating pain (at the moment at least) but a constant annoying pain that increases and decreases in intensity throughout the day (or the night for that matter). It is the type of pain that doesn't let you get very comfortable either sitting or lying down. The problem with taking pills to help with the pain, is other complications start to occur.  For example, one of the side effects of the codeine is it can cause - yes I am saying it in a blog - constipation. They sure do!  This is also a potential side effect of my immunotherapy medications. A double whammy. Yippee! Which brings us to my second symptom, a real pain in the @#$%! It seems that to try to solve one problem, you create another one!  Not really a great topic of discussion really but I promised to be honest in my blog and wanted to share some of the negative sides to having cancer, beyond the cancer itself.  I have never been the type of person to take numerous medications for my ailments, but my list of daily pills and supplementary pills is beginning to grow.

I am back to taking some meal replacement drinks to supplement my calorie intake. Despite being stubborn, reluctant and holding off for a long as I could, I had to admit defeat and return to using them to help provide me with my daily nutritional needs. This brings back memories of the beginning of my cancer journey when they were my primary source of nutrition. I hoped to not return there if possible.  

Overall I should not be complaining as I am sure that there are many other cancer patients out there that have it much worse than me in terms of side effects and pain and wish this was all the side effects that they had. I shouldn't complain really, in fact I need to come to the realization that it may get much worse as time goes on. We shall see. For right now while there is pain it seems bearable and manageable and I can live with this level of discomfort. 

100 Blogs!

Next week is a special week for My Personal Cancer Journey blog as we celebrate 100 blog posts. I can't really believe we have reached this milestone and I never expected to still be here writing this weekly blog for this long. An amazing milestone for sure.  Be sure to check out next week special blog post.

In the meantime, as the saying goes:  "no pain, no gain" right? Let's hope so. 

Richard

33

Well the first week of my new treatment is now over. Time keeps moving forward. I am so glad that this new option is available to me at this time and we were not left waiting. 

How am I doing?:

Thankfully my first treatment on the clinical trial seems pretty uneventful overall. I spent the night at Princess Margaret at the phase 1 clinic on Monday and had tests and appointments for most of the day on Tuesday. It was a long two days for sure and while this treatment has less ongoing blood samples and monitoring and only one overnight stay this time around, the treatment itself does seem to be more intensive and a little harder on me and my system overall. 

Tired:

I am definitely more tired than usual this time around. It could be partly due to the lack of sleep during my stay at the hospital. I can't really sleep well in the hospital. I think I mentioned this before in a previous post, but their pillows suck! I have a firm, memory foam pillow at home and they have flat, thin pillows. Not a match for me that is for sure. I did get to watch hockey game seven between the Leafs and the Habs on my laptop but as we now all know, the outcome was not what I was hoping for. Will we ever make it to round two in the playoffs! 

Are naps my new normal?:

I think I went for at least four naps yesterday. Definitely not my usual self. I am normally lucky if I fit one good nap in. Oh well, I have to give myself a bit of a break as I did just start a new cancer treatment. I can't expect to be peppy and ready to go all the time. Just taking some time to enjoy my time on the backyard deck, listening to the birds and surveying the gardens and spending time with a good cup of coffee and talking to Michelle and the kids, is good enough for today.

3 is my Lucky Number:

Today Michelle and I celebrate 33 years as a married couple, but we have known each other for 35 years. Amazing really not only how fast time has gone by, but also how lucky I have been to find my soul mate.  Who knew that night 35 years ago when I asked her to dance and she said "yes", that we would build such an amazing life together.  I must say, that  based on my prognosis, I did not expect to be here to celebrate this milestone this year, that is for sure. We are so glad that we can celebrate together. We had plans for a beautiful dinner on the deck tonight, but we are just going to push that out to next week, and hopefully I'll feel a little more like myself.  Ice cream, now that still goes down ok.  For our wedding dinner, we had strawberry ice cream parfaits for dessert - we are going to indulge in that tonight - a strawberry shake for me and the sundae for Michelle (and I am sure she will find some way to include chocolate sauce, LOL).  

Three has always been a lucky number for me and this year is a double three for us, so come on numbers, bring me a little luck. 

Here's hoping for as many more years as possible (with many more ice creams and with a strawberry on top!)

Richard

When one door slams shut.... another door opens!

Well that didn't take long! In less than a week I have been fortunate enough to be offered another phase 1 cancer drug trial at Princess Margaret. We are shocked and amazed really. When I went down for my scheduled appointment earlier in the week, I was not expecting to hear any positive news. I had been preparing myself for my oncologist to say that they didn't have another trial to offer at this time and that they would keep a lookout for any upcoming trials and we would be on our own until then. I thought she would offer pain medication and discuss what palliative supports were available. I am not ready for these types of discussions as I look and feel quite healthy, at least on the outside anyway. I arrived at my appointment just in time and was having a bit of deja vu as this appointment was in the same waiting room that I had been in two months previously to discuss my first trial. Here we go again! I didn't have to wait long for my oncologist to enter the room and share some exciting news.  She arrived promptly in the room and after getting Michelle on the phone for the consultation, and with very little small talk, she immediately told us that there was another clinical trial option. We were stunned and shocked really. This is not what we had expected. All week long my hopes had been dwindling and here, the door was opening up again (maybe).  

Of course this will mean that I'll be entering into a few weeks of tests and procedures and likely another biopsy - but I will gladly get poked and prodded and take this on again, with the hope of a better outcome this time around. We are currently in the process of reading over the trial information and will be coming to an informed decision as to whether or not it is a good fit for me. I have found that when your options narrow considerably, your risk tolerance goes up considerably. It will take four weeks for me to flush out from the previous trial, but I am  two weeks into that already so I should be ready to go for the end of the month. This will bring forth another set of tests and round of procedures to go through to qualify and meet the requirements of the study. I am willing to go through all the hoops required in the hope that this new trial will make a difference. 

When one door slams shut, often another door opens. I have found over my lifetime that this statement holds true. Hope is something to hold onto, despite the evidence that might suggest otherwise. Last week my hopes were dwindling and I couldn't help but feel defeated. A week later there is new hope. Just having an option, gives me hope!  This helps to reinforce that there is always hope around the corner. A new day, a new beginning. Don't get me wrong, I do understand that this new trial could eventually end up having a similar result like my last trial, having no new real impact or lasting benefit for me, however we will continue to be hopeful that it will offer some benefit, even a small benefit. At the very least it is offering us new hope and is keeping us going. We shall see how this one goes.  

A new day, a new blessing, a new hope. ~ Author Unknown

Richard 

This week is National Nurses Week! I would like to give a special shout out to all the nurses out there who work tirelessly for their patients with skill, care and compassion. Thank you! I have nothing but admiration for the work you do. By the way, I love nurses so much that I married one!  Love you Michelle.

Run for Southlake- thanks to all that supported us in this four week virtual challenge. We surpassed our goal of $2000. and ended up with $3000. in donations. We are so thankful! We also achieved our goal of 40 km over the four weeks. Thanks everyone.

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

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

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