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

Rainy Day Blues

I woke up this morning to a wet, rainy day.  It has been awhile since we have had any substantial rain so it is welcome for all of our newly planted pots, shrubs and gardens to have a good soaking or at least a day of misting.  Our lawn was just freshly cut yesterday so this rain will help to keep it lush and green.  Looking out the window over my backyard this morning, I noticed the vibrant and varied colours of green throughout the yard. Nature really is so beautiful. The dark skies and the wet conditions really make the palette of greens look breathtaking and the colours pop.  When you get the chance to actually slow down and 'smell the roses' you realize the natural beauty that is all around us. I am so fortunate to be able to be here to see this (except maybe for the snowflakes that soon followed). Yes you heard me right, snowflakes on May 28th! But this is Canada - eh!

I find that rainy days give you an excuse to slow down and take some time for yourself. Let's face it, I can't really complete my outdoor 'to do' list today. I guess I could always find something to do on my indoors 'to do' list but....... I think this will be a good day for an afternoon nap. A good day to take a midday bath and maybe snuggle up and watch a movie. 

The problem with slowing down and taking some time for yourself is that it gives my mind a chance to wonder. Usually I am so hyper focused on daily chores, schedules, and appointments but when I get a chance to slow down, my mind always seems to end up in the same place. I start to think about the future or lack of a future for me and my family. I start to get nostalgic and then get melancholy. It is hard not to wonder about what life events I will miss or not be apart of.  Lately I have been reminiscing more about past memories and even having dreams with people and places from years gone by. It is really interesting how the mind works. These moments or flashbacks of my life are both heartwarming and distressing at the same time.  

I have to keep remembering and telling myself that none of us can predict the future. None of us know what will come next or how long we have. I need to focus my energies on the here and now. I need to enjoy and celebrate the present, as the future is well, in the future, and not promised for any of us really. 

And on that note, in my immediate future, it all begins again on Monday!  Here we go again! Clinical trial number two starts!  It's back to the hospital, lots of blood work, tests and more CT scans. At least this trial is every other week so we will get some reprieve over the summer to rest and enjoy without constant weekly visits to the hospital. We are even trying to squeeze in a few getaways on my weeks off. New hope, new promise and hopefully some positive results await.

I will take advantage of this 'rainy day' to savour the time that I have with my family and be thankful for the blessing that we have together. 

"Somedays you just have to create your own sunshine." ~ Author Unknown

Richard

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

Bottle Buddy is Back!

The Return of Bottle Buddy.

Well that was fast! We are back at it. As updated in last week's blog, I screened out of the clinical trial and am back under the care and treatment of the excellent team at Southlake.  This treatment I am now heading into, called for  PICC line to be installed since one of my new medications would  need to be administered over a 48 hour period. I was quickly booked for the procedure this week, in time for my first chemo day on Thursday. We've also had more bloodwork, a CT Scan (I think I've had 7 of these to date!), and other screening tests--- it really has been so great to be able to have this excellent follow up and and care so close to home.

Now, this new treatment regime has something old and adds something new to the attack on my cancer.  With the return of one of the previous medications,  comes the return of something I had nicknamed "my Bottle Buddy"! As you may recall, I previously talked about "My Bottle Buddy" in one of my posts earlier this year, back in January. At that time, when that treatment finished up, I was very excited to have my chemo bottle removed and in turn have my PICC line removed. At the time, my bottle buddy was really getting on my nerves. The bottle was with me 24/7 and at that time it was for five days in a row, every 3 weeks for quite a few months. It followed me everywhere I went, I mean everywhere! It even slept with Michelle and I each night, neatly tucked between us with its own pillow to keep it upright, lol. 

As I mentioned in that blog, my "bottle buddy" was a constant and visible reminder of my cancer. It was very difficult to ignore. It wasn't painful or really that uncomfortable. It did however move around a lot, wiggling and flopping from side to side as I moved.  The plastic tubes also seemed to get tangled in the holding pouch a lot. I was successful at hiding it underneath long sleeve shirts. But I have to say it was great to have it off for the summer and I was able to enjoy swimming and wearing t-shirts.  With fall here and winter coming, I guess one silver lining with having my bottle buddy back, is that I will be able to once again easily conceal it under a long sleeved shirt so no one will really be able to notice it (except maybe for the big noticeable bulge under my shirt lol). At least it will only be attached for two days this time, instead of five days in a row like last time. 

Now that we have our sweet new puppy Lily, I will also need to be extra careful that she doesn't try to bite the tube or the bottle.  We shall see how that goes! Lily loves to cuddle up on my knee and I don't want to give up that if I don't have to. So far so good,  she doesn't really seem to pay any attention to it.

How long will bottle buddy be with me this time?  Well, it will be with me for as long as the treatment is working.  Our hope is that this treatment will work for as long as possible. Time will tell!  How's it going so far? Well within the first 10 mins as the new chemo started to infuse, I really could feel it, I had a few side effects that were quickly addressed by my health care team.  I've had some nausea, but overall the meds they give you to take really help to make things more comfortable.  I am immunocompromised, so again, our concerns with COVID are elevated and we are taking extra care, as well as all the extra precautions we take to watch and monitor for any other infections.

All that goes to further say, as I welcome back my bottle buddy and the chemo treatment again, I must admit that we continue to have a love/hate relationship.   I love it when it works, hate it when it is inconvenient or if it doesn't do the job!

I hope that you enjoy your weekend everyone!  Embrace your "bottle buddy", whatever that might be!

Richard