Ups & Downs

Prior to meeting your oncologist at the cancer centre, you are asked to fill out a quick online survey each time you visit. The survey was created by Cancer Care Ontario and it asks you a series of questions. They include questions about pain, tiredness, drowsiness, nausea, appetite, shortness of breath, depression, anxiety and wellbeing. The survey is written using a Likert scale with rating from 0 to 10. They track your answers over time to see if there are any significant changes in each of the categories.  I assume that the health professionals use the data to monitor your health and wellbeing during your treatments.

Two of the questions that are asked, surprised me. They were the questions about your current level of anxiety and another question asking about your level of depression. When I first began to complete these surveys,  I questioned why they would include them. I have cancer, not anxiety or depression. I began to realize their importance after my second round of chemo.

The Canadian Cancer Society points out, that both the patient and his/her family can, and most likely will go through a series of emotions which can including: shock, fear, denial, anger, guilt, anxiety/stress, loneliness/isolation, sadness, depression and hope. I must say that I have experienced most of these emotions over the last few months.

Levels of anxiety and depression do change over time during treatments. I find (and my family finds) that my level of depressive thoughts significantly increases after my round of chemotherapy (especially the three days following the removal of my chemo bottle).  It also has increased after each round of chemo. I am beginning to wonder if it has something to do with my treatments and the fact that they continue to penetrate my whole body system for extended periods of time.

Despite trying to remain positive, negative thoughts do enter your mind and cause moments of despair. I guess that this is something that should be expected. Even the most positive person has moments of despair. I have previously talked about ways that help me to deal with these emotions including: my family, friends, music, nature and laughter.

Other ways that I am trying to add to my emotional toolkit are; mindfulness exercises and positive affirmations. At times, SWEARING helps too! Those that know me, know that I'm not really the swearing type but I must say that since my diagnosis I have said "F#*K cancer!" more than a few times (usually in my head but occasionally it has slipped out loud). Believe it or not, it does have a short term, immediate positive effect. It seems to release some of my built up stress!

Anxiety can also build over time. The fear of the unknown. What will happen next? Is the treatment making any difference at all? These are all questions that come to the surface periodically. This can cause anxious moments.

My biggest concern at the moment is how to support my family and their emotions, while trying to deal with my own emotions at the same time? We all have our up & down moments in any given day. We are working through these emotions one day at a time and trying to push the positive thoughts to the surface more often than the negative.

Trying to stay positive!

Richard

My Michelle

The most important person in my life, my Michelle.

I'm sure that she will try to persuade me not to publish this post but I must publish it for all to read. It is important for me to share how much it means to me to have her in my life, to have her always by my side and how much I love her.  Michelle has been there for me for all the important milestone in my life. We live our lives together, taking each step in the journey as one. I could not have asked for a better partner during this new uncharted path that we are on together.

I honestly do not know how I could navigate this journey without her help.  Without her being apart of every step of this cancer journey. We are life partners and have stood beside each other for thirty-three years now. She is my soul mate.

Personal Champion

Michelle has quietly been supporting me and our family throughout this whole ordeal. She tries to remain positive and optimistic at all times. She always has a way of bringing us back to our focus which is our family.  I wonder if she truly understands the important role that she plays. She is the glue that binds us. She is the mediator, the encourager, the advocate and the champion of our family.

Michelle has been heavily researching my cancer diagnosis, trying to find new treatment options and advocating to doctors and nurses on my behalf. She supports me during appointments and keeps me focused on moving forward.

I know that she has not been sleeping well these past few months. The mental burden and impact of this disease is real.

Michelle is constantly checking in on me to see if I need anything or if there is something I would like her to do (or stop doing). She goes along with our 'dancing in the kitchen', local bucket list adventures and even goes to bed early (before 9 p.m.) on those days when I am tired without question.

Behind the scenes she is quietly disinfecting our home to ensure that there is less chance of me getting sick. Regularly cleaning sheets, surfaces and items in our home. She is trying to continue with some normalcy in our daily lives, balancing home and career. This is not an easy thing to do. I admire her ability to manage and persevere in a positive way.

When I need a pep talk, Michelle is there. When I need someone to reset my thinking back to the positive, Michelle is there. When I start to move back down into a place of self-pity, Michelle is there.

I worry about her and my children. They too are stuck in neutral. They are putting on a brave face for me but I know deep down that they are worried and concerned for our future. I am too. Unfortunately this is a ride that we must all take with its ups and its downs.

She brings a new meaning too, in sickness and in health. Michelle has been there for me and continues to be there for me, every step of the way.  I am so blessed to have her in my life.

I love you Michelle. XOXO

Richard

Sometimes... Laughter is the best medicine!

Yesterday, Michelle, the boys and I, went to see the comedian Danny Bhoy at Roy Thompson Hall in Toronto (Sophie is away at university).  I must say that I have not laughed like that in a long time. I don’t want to spoil his routine so I won’t repeat some of his best jokes but he has a way of engaging the audience through funny story telling. He also laughs at his own jokes, which makes you smile and laugh too. He is hilarious in my opinion!

If you have not seen him, I would highly recommend that you do. Just Google Danny Bhoy online for some of his past comedy routines. We especially love some of his older material such as his routine about how Scotland got its national flower (the thistle) and his diddle-lee-dee potatoes segment. We really enjoy watching him and we were very happy to get tickets to see him in person in Toronto. We knew that we would be laughing a lot.  The best part of the night was that for ninety minutes, none of us where talking about or thinking about cancer! Instead we were laughing our heads off. A welcome reprieve.

Michelle and I had our three children, Jonathan, Joshua and Sophia in the span between the late 1990's and early 2000's therefore these years are pretty much a blur for us. Our children did not sleep well, so we endured a severe lack of sleep for most of the decade. We often rented a movie from Blockbuster only to return it the next day not having watched it or falling asleep before it was over. (How many of you parents out there can relate to that?)

The same goes for t.v. shows. We watched t.v. inconsistently throughout their growing up years. When your children outnumber you, you spend most of your time trying to keep the peace, especially with two active boys or keep trying to get to bed early to catch up on your sleep as kids tend to wake up early (thank you Captain Obvious!).

Recently Michelle and I have began to watch Friends on Netflix. We binge watch a few episodes before bed a few nights a week. This show makes us laugh! Even though it may no longer be politically correct or accurate for today’s society (lets get real- no one could afford an apartment like Rachel and Monica’s, based on their jobs- at least not in TO!). With all the daily negative news stories and shows about murder and gun violence currently on t.v. these days we appreciate a good laugh before heading off to bed. Laughter changes your mindset.

It is amazing how laughter can change your mood and make you forget all about your troubles, even if it is for a few short moments. These are cherished moments of time. Last week, I met up with my friend Crystal for coffee and within a few minutes she had me in a full on belly laugh (you know those uncontrollable laughs that almost make you cry!). She has always had the ability to make me smile and giggle. We need more 'giggle time' in our lives.  

Here is what the Canadian Cancer Society has to say about Laughter and Cancer :

Although cancer isn't a funny subject, some people find that laughter helps them deal with the stress and anxiety around cancer. Using laughter to relieve tension doesn't mean you aren't taking cancer seriously. It's OK to laugh. When a person laughs, their brain releases chemicals that relax muscles and make them feel good. SO don't hesitate to watch your favourite funny movie or read your favourite funny book again. Or call a friend to tell them about the silly thing your pet did. You just might feel better afterwards. ( I know that I do!)

So don't be afraid to laugh.  Laugh at yourself, laugh with others, surround yourself with those people who can help you giggle.  It won't make the cancer go away, but I can definitely say that it changes mindset, and mindset is half the battle. 

I try to laugh and smile each and every day! Michelle and our kids help make this happen. They are always trying to brighten my spirits, provide me with moments to smile and moments to laugh at a with each other. 

While most of the 90's and early 2000's were mostly a blur, we can both agree that we would not have changed a thing. Michelle and I cherish these memories and heck, we can now binge watch these shows and movies on Netflix any time we want!

Richard 

Side Effects: Short Term Pain for Long Term Gain?

Many have asked me, "How are you feeling?" My answer has for the most part been, "I feel great!" because most of the time, I do feel great. I can fully participate in most aspects of daily life without any real issues or concerns.

Others have remarked, "You look great!" when they see me in person. My guess is that I am getting the 'you look great' response, mainly due to the fact that I don't really have any of the visible side effects that you would normally associated with cancer. For example, I have no hair loss. The only real visible difference you can see in me is that I have lost a significant amount of weight over the past few month (although I have been gaining some back lately!) Ironically this weight loss actually makes me look healthier, at least from the outside appearance anyway.  (it probably is actually a health benefit to have lost more than twenty pounds over the past few months, although I did not enjoy my liquid only diet- see my Food! Glorious! Food blog entry for more a reminder).

I don't want to get to 'medical' in my blog but think it is important to explain the difference between chemotherapy, radiation and the side effects that can happen due to each of these treatments. Most cancer patients are provided with one or both of these dual treatment options. 

According to the Canadian Cancer Society:

Chemotherapy (sometimes called chemo) destroys cancer cells or slows their growth (My hope is that they kill them!) Some chemotherapy drugs are given on their own. But in most cases, several chemotherapy drugs are used together to destroy cancer cells (I am currently on a combination of three different chemotherapy drugs). *

Radiation therapy works by destroying cancer cells and damaging a cancer cell's DNA so that it stops dividing and growing. Radiation therapy can shrink a tumour or completely destroy it (Again, I prefer the second result!).  It is most effective on cells that grow and divide quickly. Cancer cells tend to divide more quickly than most normal cells. This makes them more likely to be affected by the radiation (be radiosensitive) then normal cells. *

* Taken from the Canadian Cancer Society Website

The issue with chemotherapy and radiation therapy is that while their main purpose is to kill cancer cells, they also damage healthy cells at the same time. This of course is not a good thing and is what can cause side effects to occur. 

As I have stated many times in my blog, each cancer patient's journey is unique to that individual, and this is true for side effects as well. Some experience more side effects or more visible side effects than others. It is important to state that many cancer patients experience side effects that are not necessarily visible to others but can have devastating impact on quality of life.

I have been fortunate so far in the fact that I am not experiencing many of the major side effects that are possible during chemotherapy & radiation.

To further explain the "How are you feeling" answer, below are the moderate side effects that I am currently experiencing from time to time:

Short Term Fatigue-  In the past I have often been referred to by others as 'the energizer bunny'. This nickname, I can only imagine is based on the fact that I can be a little hyper at times (no comments please!). One noticeable side effect has been that I have slowed my pace down a bit since my treatments have begun. (This may not be a bad thing after all!). The three days after my chemo are the hardest as this is when the fatigue sets in. I have resorted to short naps some afternoons to address this symptom. 

Low White Blood Cell Counts- For the past two out of three chemo treatments (so far) I have had my treatments postponed by a week due to low white blood cell counts. (Better safe them sorry I say), as low white blood cells can increase the risk of infections.

Dry Mouth- My mouth can get very dry at times. I have been using a moisturizing mouthwash and a variety of items from the 'care package' given to me by some of my work colleague friends which include real ginger bits and sugar free candies. These have helped a great deal. 

Changes in Taste & Smell- (what I refer to as "Metal Mouth) Sometimes I get a metal taste in my mouth that takes away from the normal taste of foods. Sometimes I smell strange smells as well. Luckily it doesn't seem to last too long. 

Dry/Irritated Skin- My skin can become dry and itchy. At the moment, it is hard to determine if this is an actual side effect or simply the fall/winter seasonal effects of the weather coming into play here.

Some Memory Issues- some call it "Chemo Brain". It is where you forget simple things like people's names or tasks that you were doing. (This can be embarrassing at times, but I have found it an effective excuse when I forgotten where I have placed my wallet, keys or cellphone LOL).

I have been fortunate so far that my side effects have been manageable as this is not the case for all cancer patients. Thanks to my medications, (and I take them just as the Dr. ordered to prevent the side effects). As I understand this, the nausea and vomiting are not something that you can wait out or work through as it is related to the level of chemotherapy in your system.  I am glad to have these medications to help prevent and manage the possibility of this happening and I am pleased to report that I have not had any nausea or vomiting associated with my treatments so far. This is a big relief as you may recall that it was nausea and vomiting that started this whole journey in the first place (brings back bad memories!).

I will be having follow up CT and MRI scans over the coming weeks and my hope is that these treatments and side effects will all be well worth it when the results come in!

This is my experience and understanding of possible side effects but please remember to speak to your doctors and/or healthcare team regarding your specific questions or concerns (Michelle made me put this disclaimer in)!

Richard

Cancer touches so many of us!

One thing I have learned from starting this blog is that cancer touches most of us in so many different ways.  I have had many people share with me their personal cancer journey (some of which have kept it private from others). I have also been told stories of family member or close friends who are currently going through cancer treatment, are cancer survivors, or who lost their battle with cancer. Each story was unique but all had a common theme of struggle, support and love.

Some of the stories are inspiring and hopeful while others remind us that cancer doesn't always have a happy ending.  Even if you are not personally going through cancer yourself, most of us have witnessed or have been a part of someone else's journey. Cancer touches our heart and soul and provides us with examples of both triumph and tragedy. 

I choose to focus my blog posts on the positives rather than the negatives, while at the same time exposing the real emotional tug of war that plays out in your head and heart. This doesn't mean that I don't have moments of defeat, worry, anxiety and even depression. I do.  I try to quickly pull myself out of these negative thoughts, as they are not helpful. There is no need to have an ongoing pity party! I've had the pity party, I've tucked it away, and try to move on.  To me, pity parties are destructive and lead you down a spiral of self pity and "why me" moments. 

These emotional moments are not exclusive to me as I can see first hand the impact of my cancer treatments and prognosis on my wife and family. I think it is important to acknowledge and support those around the cancer patient.  Although they are not experiencing the physical symptoms of the disease, they are definitely dealing with the emotional aspects just as much as I am, or perhaps even more so. Each member of my family are dealing with this journey in their own personal way. 

If I could have one wish, it would be that I could shelter my wife and family from this disease and all of its impact on our daily lives. I wish that I could take away all of the worry, uncertainty and heartache.  This I know is not possible. What is possible is to stay positive, be thankful for what we have, to continue with as much normalcy as possible and to cherish each day that we have together.

My family is my everything,

Richard

Stuck in Neutral

Currently I find myself stuck in neutral.  Not really able to really move forward. There are so many things that we would like to do as a couple and as a family but for the moment can't really move forward because of the uncertainty of what is next in my cancer journey.  It is difficult to really plan too far in advance. My current three week cycle of treatment doesn't really allow for long term planning. For one of those three weeks I'm literally tied down to chemotherapy, the second week to recover, and while the third week is good, you are already psyching up for it to start all over again.  This is hard on me, and doubly so for our family.  As well, we don't really know what the future holds, so it basically means that we are planning week by week, cycle by cycle for now.

I can't return to life before my cancer diagnosis and can't really move forward in any great capacity either.  My current focus really needs to be on the present. This leaves me stuck in neutral. This is frustrating for me as I am the type of person that wants to move forward and get things done!

Daily Life Routines

Life goes on. The predictability of daily life helps to keep you busy. There are always things to do around the house. It never seems to end. I have even begun to get to those 'tasks' that we have been putting off years. Cleaning closets & cupboards, organizing files etc. You know you are getting bored when you actually get to these items!

I must remember that there are really two reasons for my current feelings of being stuck in neutral. 

I sometimes forget that I just recently retired in June, from a career of over 30+ years in education. The impact of this change means I am just now adjusting to this new, slower pace of life. I must say that I miss working. I miss the action, the busy days, the interactions with students, staff and families. Some days were overwhelmingly busy, to the point of exhaustion. Working as a principal in an elementary school can be very chaotic and busy. Dealing with all of the issues and concerns that come forward each day but your day was never boring or neutral!  I must remind myself that this adjustment period is part of the process of retirement which would have happened regardless of my current circumstances.

The second reason is my cancer diagnosis. This has definitely thrown a curve ball into my retiring planning. It has meant a revision to our current bucket list plans. Some of our dreams, wishes and hopes for the future are currently on hold but that doesn't mean that we can't enjoy life's pleasures.

Bucket List Revised

Prior to my diagnosis, Michelle and I created a bucket list of all of the places we wanted to visit or revisit after retiring. In a matter of a few minutes our list had grown to at least fifteen places all around the world. We love to travel! Having three kids in university over the past five years has really limited our ability to go on any major holiday excursion.  For my retirement, Michelle had arranged for us to go to New York City to attend the US Open (both being tennis fans, one of our retirement dreams was to visit each of the four major grand slam tennis tournaments) as well as go to see Billy Joel in concert at Madison Square Gardens. Even though we didn't want to accept it, we soon realized that traveling out of country was not the best option, and for the moment, put this trip on pause.

With my diagnosis, most of our bucket list plans have come to a pause. I use the word pause instead of cancelled because our hope is that we can reactivate this bucket list in the future.  So for now, we are currently revising our bucket list. Finding special events, activities and moments to share with each other closer to home. Lots of great memories have already been made and we are planning many more!

This is not to say that we haven't achieved many of our bucket list items already.

This week we purchased last minute tickets to see Elton John in Toronto. This is something that we would have never done in the past. We are not last minute people, but we had so much fun! This is something we are going to have to do more often now. Be spontaneous, be willing to go with the flow and just do it!

My advice to all is not to wait! Start checking off your bucket list items now. There will never be enough time, money or circumstances that are just right. Expand your bucket list to include events that are close to home and easy to achieve.

Remember, enjoy life and all of your adventures while you are healthy and able to enjoy them with your family and friends.

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

Thoughts & Prayers

My family and I have been overwhelmed with notes, texts and messages of support. It is heartwarming to get these messages from family, current and past friends and acquaintances. It must be difficult to write something after hearing or reading the news. What do I say? 

I remember it being difficult to know what to say when I learned about others illnesses or diagnosis. How can you show that you care, that you are there for the person and want to help without intruding or worrying that you may not be saying the right thing. There is no right thing to say! 

Positive messages are always welcome. It is sometimes hard to remain positive when the news and results you are getting are not good and sometimes difficult to understand. Getting a little pick me up message, a joke, a smile, a 'I’m thinking of you' text goes along way to brightening your day. We need to do this everyday for others. We all need these positive thoughts. I challenge you all to send positive thoughts to others in your life each day. Start today!  

Cancer is unique to each individual. Often people try to relate to your cancer diagnosis by mentioning a family member or friend who has gone through their own cancer journey. Everyone means well and wants to share their personal connection to this terrible disease. It still surprises me the magnitude of  how many lives and families this terrible disease has impacted. I can't tell you the number of people who have come forward to say that they themselves have had cancer or a close family member has or has had cancer since I started my blog. I am shocked by this. 

Thoughts and prayers do mean a great deal. Messages of support, periodic check ins and positive thoughts are encouraged. Be mindful that responses may not always be possible but know that your message has been read and know how much it means to me and my family.

It is heartwarming to see the number of people that have said that they are praying for me or have ask others in their place of worship to pray for me. People from many different religious backgrounds. Regardless of who we worship or what we believe in, we all have one thing in common, we care for others. I am so blessed. 

A few days ago I found out that a work colleague of mine had passed away after a long battle with cancer. She fought courageously throughout. My thoughts returned to her smile, her positive attitude and her caring personality. My hope is that she did not suffer in the end and that she is now at peace. My thoughts of her and her family and my prayers to support her family at this difficult time continue.

Thoughts and prayers may not change outcomes but they do change mindset. Mindset is half the battle in my opinion. My one hope is that you will acknowledge others now, letting them know how you feel about them. Don't wait until you have to include..... you are in my thoughts and prayers.

Live this each day!

Richard

My Chemo 101

Chemotherapy was next on the list.

Did you know that you need to attend chemo class prior to starting chemo? I did not. Back to school again for me and Michelle. We attended our pre-chemo teaching class along with a few others new to the cancer journey. It was quite informative and did provide us with a lot of the answers to our questions prior to the start of the treatment. I have listened to hundreds of powerpoint presentations in my educational career, this is not one that I ever expected to have to listen to.  

To get the process started a central catheter line  (PICC) was installed in the bicep of my arm to deliver  the chemo drugs into my system. This meant another visit to the hospital to have the line installed. It was quite quick and easy but now I have two tubes sticking out of my left arm! Not really a great fashion statement, let me tell you. Thank goodness summer is over so I can conceal them under long sleeve shirts. Not that I am embarrassed about them but they are definitely conversation starters that I would prefer not to have. I'm not really looking for that kind of conversation. A series of drugs were ordered to take before and during the treatment to help with nausea and vomiting as well.

Next was a follow up visit to my medical oncologist to ensure that we were all good to go. A blood test, a weigh in is needed the day before to ensure that I'm able to handle the next dose, and that the meds are created for the next day as they are based on my weight.  It's a bit of a struggle to maintain my weight, and things do seem to be continuing downward,  despite all of the Ensures!

The cancer centre that I attend is a fairly new facility that has great open spaces for patients. The chemotherapy floor has a series of hubs with eight chemo loungers in each hub. There is room for over 24 patients at one time. Can you imagine that! I still can't get over the number of people that are dealing with this disease. It floors me. You are able to bring along one person to sit with you during your treatment. Michelle was by my side for my first treatment. Even though I told her that I could do it myself, that six hours was too long, that she could work from home and then return at the end, she insisted on attending with me.  

My first chemo was the longest (approximately 5 hours) and I received two different types of IV meds and then I went home with a bottle of chemo that is attached to my PICC line that infuses for five additional days. 

At first I thought, I can handle this no problem.  This sounds great. Less time in the hospital, more time at home but let me tell you, having a small plastic bottle strapped to you 24/7 for five days in a row is a constant reminder of what you are going through. Trying to keep it upright, wondering if it is working, waking up in the middle of the night (wondering if the bottle remained attached) and carrying it in a crocheted sling holder (graciously made by some wonderful volunteer) throughout the day did test my patience and limit, not to mention the issues with showering. 

The hardest part was on day five when we were waiting to contact the nurse to remove the bottle once and for all for this cycle. The bottle was supposed to be fully emptied by 4 p.m. Meanwhile 5 p.m. went, 6 p.m. went and the bottle was still not empty. I'm not going to wear this thing again for another night! Finally by 8:30 p.m. the bottle was empty. We survived. Chemo Week 1 was officially over!

I am happy to report that I did not seem to have many side effects at all for this first treatment except for a loss of appetite. I did keep up with the anti nausea medication schedule exactIy as prescribed.  No need to be a hero here!

But clearly, I  need to eat and drink more to keep my weight up. 

Now a two week break and them back to the chemo cycle again!

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

My Radiation 101

As I have said previously in my blog, each cancer patient's treatment plan is unique to them. My team of doctors decided that I would begin with 10 consecutive rounds of radiation followed by chemotherapy.

The introduction to the radiation plan actually began immediately following our conversation with the Medical Oncologist confirming that I had esophageal cancer. Just minutes after receiving this horrific, life altering news about my diagnosis we began a series of meetings with the treatment team which consumed the rest of the day. I guess we shouldn't have been so optimistic and parked in the two hour zone! 

We first met with the Radiation Oncologist to discuss the plan for radiation. Next we met with the drug reimbursement specialist, to confirm that we had insurance to cover all of the drug costs. This was followed up with a meeting with the dietician to check my weight and review my eating plan. Finally we were sent downstairs to have pre-radiation orientation. We watched a short video on what to expect and what to prepare for. The radiation schedule was set to begin in one week. We were very pleased with the speed at which the treatment was going to happen but that was a long, tiring and emotional day for the both Michelle and I. We had a lot to process!

I had always told myself that I would never get a tattoo. I don't like them and didn't like the thoughts of having something permanently inked on my body. No offence to those that have tattoos. To each his/her own! That all changed with my cancer diagnosis. I was told that I would need to have four small tattoos placed on my chest in order for the radiologists to properly aline the radiation rays. As this really wasn't an option, I agreed to the four tattoos. That's right, I got four tattoos in one day! Move over David Beckham and Justin Bieber, there is a new bad boy in town! Did I forget to mention that they are only the size of a pin head! They still count as four tattoos though.

Radiation at first seemed scary to me (as I was picturing the CT scan and the MRI scans that I already had) but honestly after the first day, it was actually relatively quick and painless. I was in an out in less than half an hour at each visit. 

The daily radiation routine includes, checking in at the registration desk, changing into your hospital gown, wait to be called in, enter the room, lay on the bed with your arms above you. They turn off the lights and the radiologists them align the lasers with your four tattoos, take measurements to adjust to ensure the all is in alignment. They ask you for your name and birthday at each visit (I guess to ensure that the right patient is being treated). Finally they turn back on the lights, turn on some music and then leave the room to begin the process.

There are two passes of the machine that take a 360 degree rotation around your body. The first I have been told is to ensure that all is good and that everything is in complete alignment. They take a quick scan to compare to the day before during that first pass. Any minor adjustments are made remotely and then you wait for the second pass of the machine. 

On a few occasions that second pass seemed to take a lot longer than over the previous days. Your mind starts to wonder. What is wrong? Is the machine not working? Is the alignment not right ( I don't want radiation in other areas of my body).  Finally the machine boots up and the second pass begins. After I asked, was everything ok? Why was the second pass delayed? Happy to hear that they were actually in discussion with a student radiologist, explaining the process and steps to them. Being an educator myself, I had no problem with this on the job training support.

As I had done with the MRI and CT scans, I found a focal point to ease my mind during the process. A smear on the ceiling, a word or number, whatever it took to take my mind off of what was happening at that moment. 

Medication was prescribed for any possible side effects of the radiation. Luckily I made it through the 10 days with no side effects. One positive to hold on to!

On the final day I received a certificate saying that I have successfully completed my radiation. Not a certificate that I will proudly display or add to my professional portfolio, but glad to have one more step behind me. 

Richard

Hurry up and Wait!

One thing is for sure, you need to be patient being a cancer patient. A great deal of time is spent waiting. Waiting for appointments, waiting for results, waiting for doctors and waiting for next steps. Being a 'get it done kind of guy', this is very difficult for me. Sitting in many different waiting rooms over the past few weeks, you can see others also patiently waiting. As I sit there I think to myself- Why are they here? Are they a patient or a caring support person? What type & stage of cancer do they have? What was their life like prior to their cancer diagnosis? What would they be doing if they didn't have to be here?

Most of us sit in silence waiting for our name to be called. There is an eerie silence. I find it difficult to strike up a conversation with others who are also waiting. What would I say? Will I offend someone? I'm not even sure that I would want to talk about my own journey out loud with others. As I look around the waiting room I get the sense of melancholy. It is as if all of us sitting here are frozen in time. Our lives have suddenly been put on hold and we focus on our individual cancer journey. And we wait!

Don't get me wrong the medical professionals are trying their best to keep on schedule and reduce the amount of time that we have to wait. I can imagine how difficult is must be for doctors, nurses and other health care professionals to meet with families, share results and updates. You can't rush this. Each family deserves the time they need to ask questions and understand what is happening every step of the way.

Waiting for news and outcomes is the hardest of all. Tests results take time and sometimes the time between the test and the sharing of results can seem like forever. Too often lately my results has not been positive. Despite this, we try to remain positive.

As a cancer patient or a family member of a cancer patient, we need to be patient. In most cases it is hurry up and then wait.

Richard