Journey vs. Battle

When I started my cancer blog over a year ago now, I struggled with what terminology I would use to discuss and share my own personal experiences along the way. Was it a cancer journey or a cancer battle? Was I fighting and battling cancer or was I dealing with a disease that would change my life. How would we handle it? How would we navigate what was yet to come?

Before starting my blog I skimmed some other cancer blogs and found that most were referring to their journey as a 'battle' or 'fight' against cancer. They included a lot of war terminology that seemed harsh and inappropriate to me at the time but now that I have been on this journey and have experienced all that cancer brings to my life and my family's life, it really is an accurate metaphor for the journey. I had purposely chosen to use the word 'journey' instead because I preferred to use non violent terms of reference and wanted to remain optimistic and positive throughout the posts but make no mistake this is a battle! This is the fight of my life, so I thought for this blog, I'd try using the battle analogy - maybe it reflects a little how I am feeling today!

Mission Possible?

Right from the start of this journey/battle/fight we were given terrible odds of winning (or surviving really). When you are told that you have three months to a year to live at your first appointment with your oncologist, your heart sinks, you feel hopeless and finding the will to 'fight' on doesn't really enter the picture at that particular moment in time. Surprisingly after the reality and scope of the situation finally does sink in, you quickly realize all that you have worth 'fighting' for, you regroup or pivot, you plan your 'strategies of attack' and your formulate the 'ongoing battle plan' to 'fight' back against this worthy enemy. 

Using Every Tool Available in my Arsenal

From the beginning of my cancer diagnosis, my  team has used every treatment option available to 'battle' my cancer. I have gone through radiation and three different chemotherapy treatments and now two clinical trials. Although my cancer did 'retreat' back a few times during these treatments, it ultimately fought back and moved on to new battlegrounds in my body. As Michelle likes to point out and remind me, we may have lost these battles but they did provide me/us with additional time and I am still here today fighting on, twenty one months later, still able to talk about the fight and still able to battle on. It's not over yet!

Collateral Damage

I have experienced some side effects as a result of my treatment regimens that have included an ongoing compromised immune system, various side effects with various levels of discomfort, pain and intensity.  My body weight continues to fluctuate and has once again begun to decrease due to an ongoing lack of appetite and some difficulty swallowing. Increased pain and soreness in various regions of my  body and some sleepless nights are the new norm for me I guess. 

One piece of collateral damage for cancer patients that doesn't get talked about much is the emotional side of cancer and the toll that cancer takes on the patient, caregivers and family. Your emotional quality of life and that of your family suffers.  You are constantly fighting off negative emotions, moments of despair and melancholy. You are scheduling your life between appointments, treatments and recovery days. Your hopes and dreams for the future are pushed to the here and now. You see others that are moving forward with their lives and planning for the future, exploring fun and exciting retirement options and you just can't help but feel a little jealous and envious of them. We should be doing this too! Your children's lives are also impacted by the 'battle'. Although they try to move forward and continue on as normal as possible, it's not normal and will never be normal again. Cancer is not going away. The worry and concerns are always there. It is hard to focus on your own new exciting life journey when they see the struggles and worries in their parents.  The lingering cloud of what is to come is always just a thought away.

Army of Support

Every 'war' needs a strong army to 'battle'. I can honestly say that I feel that I have a strong army of support with me, every step of the way. I am so thankful for the 'army of support' that we have received along the way. This blog has allowed me to share my journey and in turn learn about the personal 'battles' that many of you are facing or have faced yourself. We have come to realize that you can not fight this 'battle' alone and that it takes a community of supporters to help along the way. We are so grateful to have you by our side and for your words of encouragement, support and prayers. 

Fighting the Good Fight

We will, as a family, continue to 'fight' the good 'fight' for as long and as hard as possible. It has not been easy. This is a battle of wills and I can be very stubborn if I have to be!

Whatever I/we choose to call it, it is the fight of my life. I am just a stubborn as cancer can be. 

"We will never surrender!" ~ Winston Churchill

Thanks for supporting me along the way.  

Richard

Standing Tall Through it All

This week's blog comes courtesy of My Michelle.

We have thankfully approached that one year marker of Richard's diagnosis of stage IV esophageal cancer. I say thankfully, because the odds were against us and all evidence was pointing unbelievably, to a different outcome.  I often get asked "I don't know how you do it?".  Well the truth is, we really don't have much of a choice.  To give Richard the best possible chance, and the best quality of life, we have a chemo treatment plan, we have a follow up and testing plan, we have the excellent care of a health care team who are determined to help us get through it all.  Where we do have choice, is how we think, how we feel, how we treat one another, keeping connected with family and friends, and choosing to "stand tall through it all".

Standing tall, is not a new concept for our family.  It has been a value we have tried to instil in our children - encouraging them to stand up for what they believe in, make their decisions and then stand behind them, always be proud of who they are and to hold their head high.  

In a literal sense, it was one of the things that first drew me to Richard.  Richard always has stood tall, with a great sense of posture, always standing up for what and for those he believes in, always proud of who he is and our family. Richard has stood tall during his career in education, with his peers, his students and their families.

Richard has also approached his cancer journey, standing tall.  As his wife, it is one of the most difficult things to watch him go for treatments, supporting him, but not able to make it go away.  It has been worse with COVID 19 restrictions, where I can't even go into the treatments with him or sit by him in the chemo suite to keep him company.  I drive him to and from every treatment, make sure he is as comfortable as possible, that our bedding is changed and ready for his nap when he gets home (nothing is better than fresh sheets and blankets!), and that our home "sparkles and shines" and is as germ free as possible. He always walks into the hospital with his head high, his backpack confidently on one shoulder, and with purpose in his step.   I try to be strong, be his advocate and his comfort when he needs it.  I don't always stand tall, but I try.  I am a migraine sufferer and have found that I've had a few more than normal over this past year.  On one particular day when it was particularly bad, our kids said to me "Mom, you can't get sick.  If you go down, we all go down."  Certainly, more than ever I feel the need to stand tall and be strong, our family depends upon it.

I know we (and I) don't always have to be strong, that it's okay to give in and have a good cry, to reach out to others for a helping hand, and in fact it is healthy and necessary to do so!  Asking for help, and accepting help, helps us all "Stand Tall" and also gives a chance to others to share the load, and we can maybe "Stand Tall" together.

Proud to Stand Tall through it all and together, with you,

Love Michelle

  

A Blessing and a Curse

This week has been both a blessing and a curse for me and my family.

The rollercoaster ride that cancer can take you on is always mixed with both positive and negative news. There are ups and downs, highs and lows and sometimes you can experience both in the very same day! Small victories and minor defeats are part of life as a patient with cancer, especially a stage 4 cancer patient. As a family we try to celebrate the victories and downplay the defeats. We pray for as many small victories along the way as possible. We are thankful that we have had a few!

This week we experienced both a small blessing (at least we think it is) and a minor curse (hopefully). In a previous blog I mentioned that my medical team has been monitoring a small tumour in my brain that they were unsure of whether or not was cancerous.  Last week I had my next scheduled MRI followed by my consult with my radiation oncologist . I am pleased to report that they feel that this tumour is not cancerous. They will continue to monitor it but its a small victory! We take it when we can get it!

On the concerning side, my hiccups have returned and are becoming more frequent during eating. It is becoming difficult to eat tough meats like steak or well done meats. At the moment, I seem to be able to tolerate other meats but need to cut them into smaller pieces and eat them slowly. My years in education (both as a teacher and administrator) have trained me to eat fast (and usually on the go!). I have had to slowly retrain myself to slow down while eating. Still a work in progress according to my family. 

In my blog post Food, Glorious Food! I talk about how I had to change to a liquid only diet. Let me tell you that this is something that I hope I don't have to return to. A liquid only diet is not something that I would wish on anyone. Don't get me wrong, I will struggle through it if I have to.

When I start to hiccup at the dinner table or have difficulty eating, you can see the look of concern on the faces of my family members. This is probably due to the fact that it reminds us all of how my cancer journey began and what it has taken away from our lives already. My hope is that this is only a small set back. Only time will tell what is in store for me regarding food. In the meantime, we will consider this a minor curse and hope for the best. I will continue to eat all my favourite food (minus the well done steak) until the point where this may not be possible.

I encourage you to savour the flavours of your favourite foods (don't take them for granted) and enjoy the social interactions that eating together with others (family & friends) provides. Celebrate your blessings, no matter how small, and don't forget to enjoy your steak (LOL).

Richard

Celebrating Fathers

Sunday is Father's Day. My children ask me every year, what I would like for a Father's Day gift. My usual response is "nothing" because I really have everything that I need or want. But this year is a little bit different, because what I really want is more time! I want more time to see them continue to mature into adulthood and beyond. I would like to be there to see them find a life partner, to hopefully have children of their own, and build on their career paths. They each have so much potential and unique talents. I know that they have exciting futures ahead of them. I really want to be apart of these milestone moments. I hope that cancer doesn't take all of them away from me and I can share in some still to come.

From the moment each of them came into Michelle and my lives, they changed our outlook and focus in life forever. As parents and as a father, you learn as you go. I am sure that we/I have made our fair share of mistakes along the way but based on the wonderful young adults that they have become, we couldn't have done that bad of a job raising them. We always tease Jonathan, that he taught us everything we needed to know about being a parent, and Josh and Sophie reaped the benefits! I hope that the many wonderful childhood memories that I hold dear in my heart are memories that they too will never forget. 

I have been so fortunate to be with all three of them for the entire summer each year. This is one of the blessings of having a career in teaching. This has meant that I have been able to be 'present' for them on weekends, holidays and all summer long. This is a special gift of time that I have been given. I can remember packing them all up in the wagon and making our way to the park each day. I can remember spreading the garden hose out on the lawn so that they could run through it on a hot day. Listening to them laugh and giggle and try to spray each other with the hose. Taking trips to the public library and signing out books for summer reading. Visiting the local wading pools to cool down prior to getting our own pool. Stopping for ice cream or a small box of Timbits during our travels. Going on day camp trips to various parks, zoos and outings. Watching them jump on the trampoline trying to do flips, playing a fierce game of badminton or croquet in the backyard. Licking popsicles on a humid day, watching them learn to do dives and grading their hand stands in the pool competitions, roasting marshmallows by the fire, making homemade pizzas on the bbq and sitting by the poolside fire at the end of a great day of swimming. "Dad, dad, dad - watch me!" And who can forget Soccerfest which always seem to land on Father's Day each year. These are just a few of our wonderful summer memories.

I can honestly say that being a father has been my greatest achievement in life. I am so fortunate to have three exceptional children (proud dad moment here). I am so very proud of the amazing adults they have become. Each of them have strong morals, determination and a kind heart. They have so much potential. Having the privilege to parent alongside Michelle, (who is an outstanding, dedicated mother) has been incredible. I could not have asked for a better life partner. We are not expert parents by any means, but we continue to dedicate our lives to guiding them and providing them with opportunities to succeed in life. We have really put a focus on them throughout our lives. We would not want it any other way.

I want to wish all fathers and father figures out there a Happy Father's Day. Well Done! 

"Of all the titles that I have been privileged to have, "Dad" has always been the best." ~ Ken Norton

Love you always Jon, Josh and Sophie!

Dad XOXO

Words to Live By

Over the years I have found inspirational quotes from others that have inspired me and have stayed with me throughout my life. I have shared them often and want to share them once again with all of you, as a reminder of how putting these words into action each day can have a profound impact on our lives and the lives of others. 

Here we go!

" Treat others the way you wish to be treated. "  

~ The Golden Rule

This I must say is one of my all time favourite and most used quotes! I have used this quote both as a teacher and later as a principal. I have tried to follow the Golden Rule as much as possible throughout my life. I think it best sums up how we should act towards each other. As I read the headlines and watch the news these days, I think that we need to embrace this quote more now than ever.  I must say how impressed I am with the staff and volunteers at the cancer centre who support patients each day. They all seem so kind and caring and from my observations, demonstrate respect for all the patients battling this disease. It must be difficult for them to stay positive as well as they see and deal with so many cancer patients and their families.   

" No act of kindness, however small is ever wasted. " 

~ Aesop

A smile, a gesture, a small act of kindness, can go along way. Often we don't realize the impact our actions have on others. They can be positive or negative. When kindness is offered to others, it impacts both the giver and the receiver. Being kind to others is free and doesn't really take much effort but its impact can be life changing. I must say that I am overwhelmed with the kindness shown to me and my family during this difficult time in our lives. We have been blessed with kindness from many. In return, we have tried to show kindness to others, to keep passing it forward. Kindness can be contagious!

" Carpe Diem! " Seize the Day!

Ever since I watched the movie Dead Poets Society staring Robin Williams, I have loved this quote. I even purchased a small plaque with it written on it and prominently displayed it

in my office to remind me that even during the toughest days, the days when I wanted to give up, to keep pushing and make the most of it. This could be the most important quote for me right now as I continue to battle cancer. I am trying hard to Seize each Day! To fight the fight and to find the joy and laughter that each day can bring. I must admit that some days are easier than others to make this happen. I encourage you to Seize the Day too!

" People will forget what you said, people will forget what you did, but people will never forget how you made them feel. " ~ Maya Angelou

This too is such and important quote. My hope is that people will remember me as a kind, caring person who was family focused. I have tried to live my life in a positive manner and hope that I have made people feel good about themselves in some way.  I try to see the good in all people. We all appreciate a kind word or gesture from others. Making people feel good about themselves costs nothing but can make a world of difference to them. 

" You will miss 100% of the shots that you don't take." 

~ Wayne Gretzky

Being a Canadian, and a fan of hockey, I had to include this quote from 'The Great One'.  If you don't try it will not happen. I have tried to live my life this way (although I still haven't tried sky diving, rock climbing or bungie jumping- I think those days have now passed.) If you don't engage or participate, it will not happen. Take risks, try new things, explore next adventures. I'm not what you would call a 'risk taker' but recently I have decided that I need to move beyond my comfort zone and be more of a risk taker. Let's see what I can get myself into over the next few weeks and months!

What are your treasured quotes that you live by? What inspires you? Please share.

One last quote to share.....

" Sometimes you will never know the value of a moment, until it becomes a memory."   ~ Dr. Seuss

Here's to making moments into memories! 

Richard

Blessing or Burden?

Delayed One Week

Last Monday I went to get my blood work done in preparation for my second round of chemo. Blood work is usually done one day prior to chemo to ensure that you are healthy and strong enough for the treatment. When meeting with my medical oncologist to review the blood test results last week, I was surprised to find out that my white blood cells were lower then expected and he informed me that I would need to wait an additional week before I could start my chemo treatment. This came as a surprise as I felt healthy, optimistic and my eating has improved so much over the past week. I was concerned that this was perhaps a bad sign. I have only had one round of chemo so far, was my body not able to handle the strong chemo meds. What would this mean for me?

Blessing or Burden?

My chemo plan calls for one week of chemo and then two weeks off. During the chemo week, I spend one day in the hospital to get two out of the three medication intravenously. This takes approximately 5 hours in the hospital. The third medication is given to me at the end of the session in a bottle containing a balloon of medication. I take home the bottle and wear 24/7 for five days. It contains slow release meds. I plan my life around these treatments. I usually don't feel that great for three or four days after chemo day at the hospital and then gradually start to feel better. During the second and third weeks my health (and mood) improves so we use this time to get back to our 'to do' list and our 'bucket list' items. 

Michelle and I are planners. We like to make lists and schedule things. We have a white board in our kitchen to record upcoming events and use a monthly calendar to record appointments and important  dates to remember. Yes, we are both GOLD personalities.  We find that if you set objectives, write it down, we are more likely to make it happen. As well, with the multitude of appointments, we needed to find a way to keep track of them all. We keep a binder of print outs of all our appointments as well.  Thank goodness for dry erase boards! 

The uncertainty  of my appointment schedule and treatment plan, really creates limitations on these pre-made plans. One thing that is for sure, our lives are now much more unpredictable. This can cause additional stress for those of us that like to have a plan and be organized. We have had to adjust and modify on the fly. We have to adapt and change direction as needed. On the positive side this gives us a chance to live in the moment and be more spontaneous!  But definitely out of our comfort zone.

I have come to understand that many cancer patients have had to wait additional time between chemo treatments and that this is something to ensure that our bodies have recovered enough to be able to handle the next treatment.  The goal is to build up and strengthen, so it can handle being broken down again!  It is the darn cancer cells we want to kill out, but some healthy cells are collateral damage along the way.  It is difficult to wait as I want to move forward to try to remove this disease from my body as quickly as possible. Patience is needed.

So is it a blessing or burden to have to wait another week? I would have to say it is both. On the one hand clearly I am responding to the treatment, but on the other hand could a delay also give the cancer cells a chance to regroup?  Flexibility and patience are my new best friends. These are new character traits that I am learning to add to my repertoire!  

Richard

  

In those moments....

Once you hear the words, you have cancer, you really can't think or focus on anything else. It consumes your thoughts. It consumes your day. Most of your thoughts are focused on dealing with the daily issues this disease brings forth and the uncertainty of what your future holds.

There are however, moments when you forget, even for a few minutes that you have cancer.  I cherish these moments. Sometimes they are brief, only lasting a minute or two. Other times they last for longer periods of time. These moments allow me to dream again, to focus on others, to smile and laugh! You could easily spiral down into self pity and a sense of loss of hope. These moments help to refocus your attention on the positives and on possibilities.

I have found ways to help create these moments each day.

Time with Family & Friends

Spending time with my family helps to create these moments. One positive byproduct of this diagnosis is that our family is spending more quality time together. Family walks with our dog Darcy, kitchen conversations, reminiscing about important milestones or memories and frequent FaceTime video calls with Sophie (who is currently away at university) help to shift attention to others. My family has also been burdened with this cancer diagnosis. I'm sure it is on their minds each day. Difficult to escape from it. None of us chose to have this happen but we are forced to deal with it anyway. Trying to continue with normal family routines helps. Focusing on the positive helps. Celebrating small victories helps. Spending time with those that matter the most, definitely helps.

Friends and colleagues have been supporting me in so many ways. I am grateful to have them help me find ways to create these moments. From canoeing on the marsh, to boat rides on Lake Simcoe, to friendly axe throwing competitions. Meeting for coffee, having great conversational walks, text messages; they all help to distract.

Music

Music has always been a way to escape for me. I enjoy many different genres of music from rock to country. From classical to top 40. Music releases stress for me. It allows me to escape the troubles and worries of the day. I have been bringing my headphones with me to chemo so that I can 'escape' during the hours of treatment. The power of music is clear. The change in my emotions simply by playing a certain song is powerful. It can uplift, inspire and change your mindset almost instantly. I have to admit that on occasion you could even catch me dancing around the kitchen.

Social Media

I seem to have this reputation of being obsessed with social media. I do enjoy viewing, posting and creating on social media but I don't consider myself obsessed. I use social media for many reasons: 

to share, to learn, to explore, to connect and to engage. I find it a great learning tool. It allows me to gather and share ideas, resources and learn from others around the world. I must admit that I enjoy it! When I focus on social media, I forget about my worries and it provides me moments to escape and focus on something else.  

Nature

Never underestimate the power of nature! Michelle and I try to go for walks as often as possible. Getting out in nature instantly changes my mindset. I am so grateful for the pathway system that has been created in Newmarket. We are so fortunate to be able to explore our town through a series of interconnecting walkways that are connected to nature. One of my passions is photography. Nature is often the focus on my photo shoots. Nature is beautiful.  It can calm you down. Getting out into nature always creates these moments for me. Give it a try!

Darcy

They say that dogs can sense when something is different or not right. Our dog Darcy has been by my side each day while at home. Wherever we go in the house, he is there with us. When I go for a short afternoon nap, Darcy is snuggled up next to me. He is by my feet when scrolling through my phone, he is with me when I sit outside to get some fresh air and sunshine. We are so blessed to have him as companion.

I am so thankful for these moments and thankful for the people and things that help me create these moments for me. Find your moments!

Food, Glorious Food! Update

I am pleased to report that I can once again can eat solid foods! Not all solid foods but many including: spaghetti, pasta, rice, grilled cheese etc. I even had some salty, crunchy chips during the last Leafs game! Not really a healthy choice, but boy did they taste good! 

Richard

You are not Alone!

This new journey that I am on is really a solo journey. It is my journey to face. My body chose to allow cancer cells to form. This is my disease to battle but I am not alone!

I am so thankful to have Michelle by my side each step of the way. It is so difficult to process information and details as well as deal with the emotions and impact of what is happening to you in the moment.  Michelle has always been my support. I am grateful to have her with me each day to help navigate my emotions. 

What would I do without my family. Although the news of my cancer diagnosis has devastated them, they stand strong in supporting me. How difficult it must be for them to cope with this. The uncertainty, the helplessness they must feel. Each dealing with the news in their own personal way. I don’t know what I would do if it was not for my family. They are the reason for continuing to fight this battle. 

Their lives have also changed forever. Our lives have been split into two: Life before cancer and life after cancer. As we maneuver through this new reality, we are constantly adjusting and adapting but at the same time trying to keep some normalcy in our daily routines and lives. Some days are harder than others. I am so fortunate to have my family supporting me along this journey.

It has also been difficult for my extended family. I know that they don’t know what to say. They also feel helpless and are at a loss of how to help. My hope is that they will focus their attention on helping Michelle and my three children manage their new reality. Helping and supporting them as they support me.

The outpouring of support from my friends, colleagues and others has also been overwhelming. Positive thoughts, messages, notes, get togethers have all help me. Laughter is so important at this time. Not much to laugh at really these days but my friends and colleagues have provided me with special moments where I can laugh even for a moment or two and forget about what I am going through.  Words can not express how it feels to know that others have you in their thoughts and prayers and are thinking of you. I count them all as important members of my army helping me to fight this battle. 

When I look around me, I see so many others silently battling this disease. Just like me, I’m sure they did not want to fight this battle. They didn’t want to deal with all of the pills, needles and equipment being hooked up to them. We are all alone but all together at the same time. We each enter our radiation room individually and sit in our individual chemo recliners getting our treatments but we all share a common focus, fighting our cancer battle. Alone but together. 

No one should have to face this journey alone. If you know someone who is, please reach out to them to offer some encouragement, positive energy or just be there to listen to them if they need it. It takes a team of supporters to win this battle. Be apart of someone’s team! My support group is strong but others my may need some reinforcements.

Richard