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