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

Summer Breeze

This week's blog post is written by My Michelle.

It’s funny how here in Ontario, we seem to quickly go from winter right into summer - not that I am complaining - as this winter for some reason, seemed just a little too long.  Richard and I love to garden and see the perennials start to shoot up as the days get a little warmer, the sun a little brighter, and we spend more time out of doors.  No matter how full the garden was last year, we always like to head out to the nursery and end up coming home with a trunkful of new plants to go in just that spot, that is missing a little something.  We always try and switch it up every year with a slightly different colour scheme on our patio - this year it’s white and green in the front yard, and tropical in the back with lots of ferns.  We are trying a magnolia bush and jasmine plant in our front planter - smells divine - we’ll see how it all goes.

May is kind of a bittersweet month for us.  It was in May that we lost my father to a battle with lung cancer. It was in May that Richard’s mom unexpectedly passed away - both were gone too soon.  It was also in the month of May that my mom had her stroke. This month we also lost a colleague from our tennis club that has been very upsetting for us both - we often saw her on our walks around Newmarket and stopped to chat with her, in this case we spoke with her just the day before she experienced a brain aneurysm and passed away shortly thereafter.  It was ironic at that time, that she was asking Richard how he was doing and wishing us both the best, not knowing what was to come her way, the very next day. Life can be so unexpected and yes, unfair and frankly we are starting to think we should hop from April right into June and skip that month, which hasn’t been the best in recent years.  

This month (May) Richard was discontinued from a clinical trial due to progression of his disease and as he shared last week, we are going through the workup for another one.  We just keep hoping that something will work, give us more time together, and importantly that Richard will continue to feel good.  It is tiring for him and we just can’t seem to catch a break. 

All that being said - Richard and I are more the “glass half full” kind of people.  We look for, and try to find the optimism in most things.  We are not letting cancer hold us back - we’ve planned a cottage vacation, we are planning a getaway for our anniversary (lock down permitting of course), we are planning for some small reno projects at the house and continuing with our basement clean up!

But when that summer breeze beckons, and the pool is sparkling, the deck cushions and loungers are out and the perfume from the flower garden hangs heavy in the air - outside we go, coffee in hand and breathe in the day.  I’m not particularly religious or spiritual, but isn’t it kind of comforting to think that just maybe that light summer breeze that lifts your hair and rustles the leaves in the trees, is like a soft memory passing by.

“Summer breeze, makes me feel fine….”

Let’s turn May around into more positive memories and celebration of life.

Love Michelle

XO

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

Take a Deep Breath In - Hold It - Breathe Out

SCAN-xiety 3.0

Well here we go again! It is time for another CT scan to determine if my latest line of treatment is making a difference or not. You may recall in my previous blog posts SCAN-xiety & SCAN-xiety 2.0, my track record for receiving positive results has not been good. This brings forth additional anxiety each time leading up to the  test and waiting for the results. As the date of my CT scan draws closer our worry and fear increase proportionally. Many questions continue to swirl around in my head including:  will this time be different? will I finally get some positive news? has my new treatment made any difference at all? have all these tests, overnight stays at the hospital been worth the effort? 

I really did not expect mental health to be such a key factor in my cancer journey when this all started, but after you are diagnosed with cancer, your emotions run wild and are easily intensified. As Michelle mentioned in her blog post Our Life is a Rollercoaster, we have gone through every emotion imaginable from anger, frustration, fear, sadness, surprise, despair and hopefulness to just to name a few. The twists and turns of a cancer journey make life a living drama. It is not a ride we asked to be on but we are buckled in for the long haul and are ready to face all ups and downs and twists and turns that cancer brings our way. 

The stakes of these particular CT scan results are really high this time around because they will indicate whether or not  my treatment is making a difference. It will also indicate continuation or perhaps topping of my trial.  The CT scan review meeting with my oncologist is already set for early next week so at least I will not have a long wait to know. This is a small comfort because the emotions and worry set in during this waiting period for all.

Our hope is that this treatment is actually making a difference and that I am slowing down the spread and growth of my active tumours. This was the hopeful outcome of joining this trial in the first place and this is the message we hope to receive next week at the post CT scan meeting. I think that we deserve it. After several disappointing CT scan outcomes we are due for a positive one this time around. I have been following every protocol and attending every procedure, appointment and treatment without fail. We must reap the rewards of this commitment at some point, right?

Regardless of the outcome of the meeting next week, we will not give up! Giving up means admitting defeat and that is something I/we just can't do. I will do whatever it takes to keep moving forward, to keep as healthy as possible and to live my life with my family and friends. If this trial, is not working we will look for another one. There is always hope, there is always a possibility and least that is the the way we see it. 

Like the instructions during the CT Scan..... we need to take a deep breath in, hold it, hold it, hold it and then breathe out, while we wait.

" When you have exhausted all possibilities remember this, you haven't." ~ Thomas Edison

Richard

When In Sickness and in Health, Really Matters

In sickness and in health really does say it all! Michelle has fulfilled this marriage vow every step of the way along this life journey we are on. She is the one person who and has been there with me from day one. When we were challenged and moving from good health and life plans, to facing symptoms, all the scans and tests, the big "c" diagnosis,  the radiation, cycles of chemo,  up to my current clinical trial participation, she has been there for me in every possible way. As I wrote in My Michelle, she is the most important person in my life.  

Luckily my current level of care can best be described as minimal in terms of the physical needs as I am fully able to function and support myself in most areas. At least for now anyways! But a burden of care is not just care of sickness and nursing and medicine, it's all the other stuff, the living, the worrying, the supporting of me and our children, and the coping too. Michelle, has been there to provide my with much needed emotional support. This is an area that medicine & treatments can't address. She checks in on me throughout the day to see how I am doing and always tries to lift my spirits. One positive of the COVID pandemic is that she has been able to work from home 100%, so we are always home together.  I know how difficult it must be to remain positive herself, to have high spirits all the time and keep our family going in the right direction. It is a constant worry for her. I know that she often feels helpless and perhaps feels that there is really nothing she can do, but she is doing more than she knows. It means the world to me to have her by my side and to know that she is there for our children. She tries her best to ensure that I am comfortable by providing me with anything that I may need or want (she bakes great pies, LOL!). She is simple amazing! I am not sure how she keeps it all going really.

She is my champion, my advocate and my number one cheerleader. I know that this is not an easy thing to do when your own emotional state must be verging on despair at times.  I know that she is secretly researching and reviewing other trials and treatments in hopes of finding a new path forward that may lead to some more positive results.  Michelle does this work unselfishly (while maybe selfishly hoping for more time). She does it with love, care and compassion. I recognize the toll that this is all taking on her. 

Who cares for the caregivers?

Being a caregiver to a cancer patient is not a 9-5 job. It is 24/7, day and night job. There is no rest or respite for caregivers. This is a role that they did not ask for or ever wanted,  but regardless they take on this almost invisible role with determination and with a sense of purpose. Michelle does this each day with care and compassion.  I try not to be a burden for her and hope that she realizes how much she means to me. Michelle thank goodness I have you in my life.  

It hits me, this is when in sickness and health, really tests you, and really matters.

All my love to you Michelle X0X0

Richard

Health Update: I have now graduated from the 18th floor- Clinical trials space to the Chemo "Daycare" for treatment on the 4th floor at the hospital. Who would have thought that I would be in daycare at my age! LOL. I actually wish that I did not have to move floors! The 18th floor, although busy was nothing like my experience on the 4th floor this week. As always, I continue to be shocked by how many people are dealing with cancer and cancer treatments.  There are so many people and treatments underway, that  you have to take a number and then wait in a large, busy, socially distanced waiting room to be called to let you know which location to go to when it is your turn for treatment. I had to wait 2 hours past my appointment start time before a chair became available. I have been told that there are over one hundred chemo chairs on the floor and they are divided into stations or centres by colour. I was in the purple suite this week. Your actual chemo chair space is not much bigger than a small closet. You can forget about privacy. You are in close proximity to others that is for sure. Thank goodness for my headphones and laptop to keep me distracted and entertained, and what did we do before cell phones and texting to keep in touch.  But truly, I am  thankful that there is a chair and a space for me!

Putting on our shoes!

This week's blog come courtesy of My Michelle.

I love shoes of all kinds, it’s no secret and I don’t know why, I just do!  There’s just something about them that brings me joy – whether they are dress shoes with heels, a beautiful colour (blue is my favourite, but red shoes are special too!) and my more functional ones for walking and running.  There is a standing joke in my family, as one time, I did buy a few (yes I said a few) on a bit of a shopping spree at Jimmy Choo, and I continue to have the store reach out to me with my “personal shopper Andrew” trying to lure me back! Yes, I may have a bit of a shoe addiction problem!  But I do come by this honestly!  My mom is a big shoe lover.   At this time she is in long term care and not quite the same since her stroke of 2 years ago, but it brings a big smile to my face as I think of her and how just before this all happened and how we did a bit of a shoe “fashion show” trying on all her favourites!  She too is a lover of red shoes!  Lucky for me, Richard has never been too bothered by this hobby of mine as a “shoe collector”, although he was a bit concerned about the “Choo” shopping spree at the time! Lol.

This week kicked off the Southlake Virtual Challenge and fundraising efforts – Richard and I are entered as a team called Richard’s Roadrunners (Beep! Beep!) – not that we are doing a lot of running these days (other than back and forth to Toronto and Prince Margaret Hospital) but we are doing our best to get out and get walking, enhancing our fitness and wellness goals  for this amazing cause.  You just don’t realize how fortunate we are to have this amazing hospital here in our community and the top notch health care teams that they employ, until you need it.  Southlake and the Regional Cancer Centre have been there for us and Richard has received excellent care and follow up – and we are doing our small part to show our appreciation and raise funds.  We are actually in the top 10 for fundraisers for this cause and we thank  you for your support!

Certainly we have been much more active in the past than we are now, we have just settled into a new normal, and lowered our expectations a bit – adjusting to accommodate Richard’s energy levels and I’ve been adding a bit more in to ensure we hit our goals!  While I say adjusting to meet Richard’s energy levels, I have to say he is doing well and not much keeps him down and he continues to outpace me for sure on our walks!  Movement gives you so many benefits, not the least of which is a change in landscape:  something else to look at, other people to see, a chance to see neighbours and say hello (from a safe physical distance of course) and there is something about walking, that also gives you time to talk.   Sophie and our puppy Lily are consistent walking partners, and at times our sons Josh and Jon will join in.

It sometimes takes real motivation, teamwork and support to “put the shoes on” and get out the door, and in many ways, this is a metaphor for how we face these days and this part of our cancer journey together.  There are days when Richard leans on me and with encouragement, to  “put the shoes on”, and outside we go.  There are days (and these are many) when I lean on him and get motivation from him as he “puts the shoes on” and heads down to Princess Margaret Hospital, to participate in a clinical trial, and with the hope that this is working for him and for us.  

When he is away for his treatment, whether that is for the full day or with the overnight hospital stay, our house is a lot quieter,  our puppy mopes around, our kids mope around and we wait for the texts to come through from him to let us know  how Richard is doing, how the treatment is going, how he is feeling and importantly “when are you going to be home?”.  On these days, it is really hard to “put the shoes on” and go about my day.  Sophie and I try and get out for a walk to keep our team going and contributing to the virtual challenge, but we don’t really go out until we know that “daddy is doing well” and we can have a bit of a spring in our step.

We all have our challenges that we are working through every day and I hope that you find motivation to “put your shoes on” and just put one foot in front of the other.  I find that is sometimes all it takes, and before you know it,  you are walking and coping and able to face what life throws at you that day.  That’s all it takes, just face what this moment brings – that’s what I am trying to do.

I encourage you to “put your shoes on”, and if you need a little motivation, there’s nothing like a new and colourful pair to literally put some spring in your step!  I have a beautiful pink pair of trainers that make me smile.

Now I wonder what the new line up is this spring at Jimmy Choo….?

Love Michelle XO

Home Sweet Home

The title says it all, Home Sweet Home! You really don't fully appreciated your own home and all of it's comforts until you are away from home for a period of time. Over the past several weeks I have had to spend an overnight stay in the hospital for monitoring and blood draws. This is part of the requirements for me to be a participant in the trial study.  Although the nursing staff try their best to make you feel as comfortable as possible, it is difficult to replicate the comforts of home. Hospitals are such a sterile environment and rightly so. They need to be. Hotels they are not, that is for sure.

Although we are spending all of our time at home these days with our loved ones, I must say that I really miss my family when in the hospital. It is not the same watching Jeopardy without Michelle and our Miss Lily.  It is not the same eating dinner alone, instead of together at the family table, or being able to walk out the door and spend time in the backyard. I miss knowing where everyone is at in the house, and popping in for visits throughout the day. The comforts of home are just that, comfortable. It can be rather lonely being in the hospital. 

Other than my family, there are a couple more comforts from home that I truly miss. My pillow! The bed covers! Oh how I miss my memory foam pillow and heavy bed coverings from home when I stay at the hospital. I have even secretly asked Michelle if she thought that I would be allowed to bring my own pillow from home with me for my stays. No such luck. The pillows at the hospital are almost useless. They are so flat that they barely lift your head up off the bed. Even asking for a second one doesn't really make much of a difference. I truly miss my memory foam pillow. Michelle and I have become accustomed to a certain number of  blankets with a certain weight on our bed. After 32+ years of marriage we have mastered the 'Goldi-locks" phenomenon of "this one feels just right". When we were first married, I liked light weight and she liked heavy weight blankets. Over the years, she has slowly kept adding more and more blankets on the bed and I find that now I have slowly adjusted and become accustomed and comfortable with the weight of blankets on our bed. It is now actually hard to sleep when that weight is not there, and when she is not there. At the hospital you get one thin sheet and one super thin, light blanket. Not going to do it I am afraid! 

The food! What can I say, culinary dishes they are not. Food in hospitals is notoriously bad. My experiences have proven this again. I havent really eaten any of the meals offered to me for the most part. There must be a great deal of food wastage. It not an easy task to satisfy everyone's taste buds and food needs but I do feel they could do a little better in this department. I must admit I am somewhat spoiled at home for food, we have some awesome meals and baked goods that really are delicious.  My children suggested that I Uber something to my room. I couldn't bring myself to do that, not even sure if that would be allowed. Shhhhh! Even though I wasn't support to leave the hospital, I did sneak out and get some Swiss Chalet take out (next door to the hospital) this week during my stay. 

Being in a semi-private room means that you get the luck of the draw in terms of the window bed and with your patient partner. I have gotten the window bed only once out of the three stays at the hospital.  My roommates have also been diverse. They ranged from two that have said 'hello' and not much else to another that happened to also be from Newmarket. What are the chances! Conversation ensued and we ended up removing the drape barrier between our beds so that we were able to watch the Leafs game together that night on my laptop. Even though he was a Habs fan, I still let him watch the game with me! Go! Leafs! Go!

Luckily, I have completed my three required overnight stays at the hospital, and for now my time at the hospital will be confined to day visits only for treatment. I feel pretty good, tolerating the treatments well, and have great energy.  Let's hope it stays that way for a long time to come!

Cherish your family, and your home (your pillows and blankets!). 

Home, Sweet Home everyone.

Richard

A Room with a View: Looking out my Hospital Window

This blog post was written on Thursday, April 1st.

I am sitting here this morning, looking out my hospital room window, staring at all the office towers and city streets. They don't seem to have the usual hustle and bustle that they usually do. University Avenue or "Hospital Alley" as it is also known (due to the number of hospitals located in close proximity), is much busier than most of the other downtown streets I have passed this morning on my way to treatment. On University Avenue, a flurry of patients and healthcare workers are all making their way to their intended destinations: starting shifts, ending shifts, off to appointments and treatments. The lack of hustle and bustle in other parts of the downtown are not surprising given the fact that most people are working from home these days. The hospital and the streets near them however seem as busy as ever!  

I arrived this morning before 7 a.m. to have my blood work done and there were actually only three people waiting in line at the blood lab at that time of morning. This early morning appointment meant that I was in and out quite quickly! Now what to do? I still have to wait until at least nine o'clock before the transition of overnight patients leaving for the day and new patients arriving get to take their place. Luckily there is a Timmies on the main floor so coffee number two here I come! I am still very happy that they were able to arrange for an early morning, same day, blood lab appointment, which although it makes for a very long day, it frees me up from making another trip down to the hospital on the day before. Less travel, less parking, less reminders!

Due to COVID restrictions and protocols there are really no places to go downtown. Once you enter the hospital, and after your COVID screening, you aren't really supposed to leave the hospital again until you are done for the day. As time went on, the flow and pace of people arriving at the hospital started to increase, soon the 18th floor waiting room couches are full. I will be spending the next eight hours or so on the 18th floor, the cancer trial floor with lots of time to stare out my window. 

A room with a view:  what a view out my window! Being on the 18th floor gives you a great view of downtown TO. I am so lucky to have the window view this week. In the past, I have had the second bed closest the the hallway and spent many hours of the day staring at a wall, sink and door. Not much motivation or stimulation with that view! Having the window view gives me the chance to stare outside and see what others are up to, what is happening in the world around me. I'm sure that most are doing something more pleasant than me. As I look down below, I can see a city school with kids playing on the pavement, people walking their dogs, people jogging and others rushing to wherever they are off to. As I sit up in my hospital bed with lots of time to kill, I am forced to slow down (not really by choice LOL) but it does give me alone time to think and ponder. This is not always a good thing. When I keep busy, I have less time to think about my current state of affairs. I try not to think and ponder too much these days. Thinking sometimes takes me down a negative path and it is not the path that I want to be on. I don't want to get myself into a personal pity party. Luckily I have my laptop, phone and wifi access to distract me. It is unfortunate that these times mean I need to be at the appointments and treatments solo.  I appreciate keeping up the text conversations with Michelle, our kids, extended family and friends.  This helps the day go a little faster, keeps me distracted, and keeps them informed, as I know its hard for them to be away as well.  Luckily the treatments allow me to be able to drive and be independent. With COVID restrictions and the distances into Toronto from our home, otherwise this would be really tough.  It also means when the treatments are done - I am "out-ta here" ASAP, (well until I get stuck on the North DVP trying to get home).  Keeping busy, having my independence, helps me to avoid going down these pity paths. 

Looking out my window provides a wonderful distraction but at the same time provides a reminder that life goes on! I plan to enjoy life as much as possible for as long as possible. 

Enjoy the view wherever you are, I sure am!

Richard

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