Back to the Drawing Board......

Well we got that dreaded phone call again! This week my oncologist called to share the results of my most recent CT scan. These scans are regularly scheduled on a quarterly basis to keep track of the progress/lack of progress of my cancer treatment. You might remember that after my last CT scan, we got a call from my oncologist a day later with bad news. He regrettably explained that my current treatment wasn't working to halt the growth of my cancer tumours and therefore this  line of treatment would have to be discontinued and I was started on the third line of treatment option, or what we affectionately called "Plan C". He indicated that this was the last line of defense that they have available and approved to deal with my cancer. With it came the return of 'bottle buddy', the PICC line back in and bi-weekly trips to the chemo suite! We'd been on this path for about 3 months, and it was time for another scan.

This time around we got no early phone call after my CT scan. This had to mean that this was good news, right?  I was wrong! It was not good news.

On the scheduled call, he indicated that the third line of treatment I was currently on was unfortunately providing mixed results. Although most of my tumours remained stable, the tumours in my liver were actually growing. Not by much, but they were continuing to grow. This meant that this line of treatment wasn't being successful. It was not doing its job.  

Disappointing news for sure and very upsetting for our family. What was next? Was there a plan D for me? This third line of treatment was considered the final level 

of defense for esophageal cancer.  What I have going for me, is that despite what the CT scan is showing, I feel pretty well and functioning as normal.  But no doubt about it, cancer in your liver is not good news. I have once again been referred to the Princess Margaret Hospital to seek eligibility in some newer and earlier phase cancer clinical trials that hopefully this time I will qualify for. Our hope is that there will be one that is safe, appropriate for me and has some promising results. Fingers crossed.

I guess I should consider myself lucky. Most patients with esophageal cancer don't make it this far or for this long. I am truly an outlier! This was our hope and dream. I guess we will now need to be  trailblazers too!  With persistence, a positive attitude, the love and strength of my wife and family and just a little bit of luck, I will continue to be a positive outlier! 

Staying positive, staying hopeful and planning to pave a new trail for myself and others to come! 

Thank you for your continued care and concern. It is so much appreciated.

Plan D, here I come!

Richard

Thursdays!

Today is Thursday, which means it is chemo day! Every other Thursday, I make the short trip to my local hospital to get my bi-weekly chemo infusions. This morning while savouring my first morning cup of coffee and prior to my morning appointment, Michelle asked me how I was feeling today.  I told her I felt pretty good, definitely at least an 8/10.  Michelle asked me if I ever resented having to go for chemo? Does it bother me or am I worried or dreading chemo days. My response was rather quick, and I told her that I did not resent it at all. This may not be totally honest.....

I must say that these bi-weekly treatments have really become rather routine now. It is really just a part of my life and there is not much that I can do to change that. I don't really have any other options at this time. I have come to accept it. Don't get me wrong, there are definitely better things that I could and would be doing with my time if it was an option. I must say that it is really a small price to pay to hopefully prolong my life as long as humanly possible. So far it has kept me fairly healthy and able to fully function in all of aspects of daily life. My hope is it will stay that way for a long time to come.

This round of chemo, which is my third line of treatment, takes approximately 3.5 hours to complete. I usually use this time to take out my laptop and write my weekly blog post (like I am doing today). At other times, I scroll my social media feeds or do some other work. Thankfully the hospital now has free internet for cancer patients. Distracting myself and keeping busy helps to make the time go faster. I also bring along my headphones and use them to play music during my stay. This helps to drown out the conversations, beeps, rings (that seem to be going off constantly) and discussions happening all around me. I must say that there really isn't much privacy in a chemo suite. There are six chairs per chemo pod and they are relatively close in proximity and only separated by curtains, which are not even closed most of the time.  

I do notice that on 'chemo days' my family and I seem a little more apprehensive and somewhat melancholy. We all seem a little more subdued on chemo days. I guess this is because these days are a bi-weekly reminder that I have cancer and a reminder of the way it has changed all of our lives forever. I have even noticed our little Lily giving me a little more love and attention on chemo days.  How do they know that something is not just right?  

If Wednesdays are known as  'hump day' then Thursdays are known as  'chemo day' in the Erdmann household. I guess even though our family doesn't really look forward to chemo days all that much, another Thursday chemo day means more time together as a family and time to enjoy what life has to offer us all - Looking forward to many more Thursdays!

So reflecting back on that conversation this morning, today I do feel pretty good, I'm taking the opportunity to have chemo treatments as a good thing, having hope and grateful for so many things that I do have, and choosing not to be resentful and choosing to stay positive!

Richard

Bottle Buddy is Back!

The Return of Bottle Buddy.

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

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

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

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

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

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

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

Richard

Today's Forecast: Foggy with a chance of forgetfulness

Have you ever been in a fog? Most of us have at some point in our lives experienced forgetfulness or periodic moments of memory loss but when you are a person with cancer, chemo brain can be a real issue at times to deal with. It comes and goes but can leave you at times feeling disoriented and somewhat confused.

I was somewhat relieved to find that the experiences I was feeling, were acknowledged in both the Canadian and American Cancer Societies.  I found the definition according to the American Cancer Society,  described it pretty well and as the following and share it below:

What is Chemo Brain?

Sometimes people with cancer worry about, joke about, or become frustrated by what they describe as mental cloudiness or changes they might notice before, during, and after cancer treatment. This cloudiness or mental change is commonly referred to as chemo brain. Doctors and researchers may call chemo brain many things, such as cancer treatment-related cognitive impairment, cancer-related cognitive change, or post-chemotherapy cognitive impairment. The word "cognitive" refers to the way your brain works to help you communicate, think, learn, solve problems or remember.

Most define it as a decrease in mental "sharpness" and describe it as being unable to remember certain things and having trouble finishing tasks, concentrating on something, or learning new skills. Even though exact causes isn't known, it can happen at any time when you have cancer.

Some use the term 'chemo fog' to describe it instead of chemo brain. I feel that this is a better description of what it is like to have chemo brain. I would describe it as walking around in a state of fogginess. You can be unclear and unfocused. Sometimes I just kind of zone out.  As a person with cancer, these episodes of fogginess can be short ( a minute or two or for longer periods of time). Luckily they don't last too long. I find that for the most part,  I experience 'chemo fog' a day or two after chemo treatment.

Sometimes you forget the small stuff like names, places or what you are currently doing (why am I in the kitchen again)? Your brain is cloudy. Being foggy describes it well. It becomes harder to concentrate and think clearly. Luckily my chemo fog is fairly minor (at lease I think so, you would have to ask one of my family members for confirmation of that). It is generally sporadic, but when it happens is annoying and sometimes worrisome. I usually pride myself on being fairly sharp and alert for the most part.

It can be a bit embarrassing to be forgetful, especially when you temporarily forget someone's name that you should know well. I am the first to admit that I have always been bad with names but this is different. Forgetting someone's name that you know well or see often is concerning. Having chemo brain only amplifies my name recognition issues. 

Have you ever gone to the the grocery store to pick up a few items and return home with everything (including some extra items) but forget to buy the most important item or ingredient? I have. In fact it is becoming increasingly the case. I am in the grocery aisle and trying to remember what the items were again. I now put my grocery list into my phone so that I can refer to it if needed. Come to think of it, LOL, Michelle has been with me for some of these short grocery trips too. I guess it is just another example of sympathy symptoms on her part ( or it could be the lack of consistent sleep too).  

Life is foggy at times. We all can have moments of temporary forgetfulness. Sometimes forgetting is a good thing. I must say that I truly enjoy the moments when I forget that I have cancer! As a family we continue to have a clear focus on what is important, namely our family, creating memories and making the most of each day that we are blessed to have together. There is no fogginess there!

Stay focused everyone.  Keep moving forward through the fog!

Richard

Tired!

The title says it all. I am tired. I am tired in so many ways. I am tired of this disease and the limitations that it is creating for me and my family. I am tired of the side effects that are slowly interfering with my life. I am tired of waiting for what is next. I am just plain tired - but I am not giving up.

I am definitely tired of this disease. It has and continues to take away so much from me and my family. We continue to live in a constant state of limbo, and cloud of stress. We can't really plan our future with any great detail or long term timelines. It is hard to live your life or move forward (with hopes and dreams) when you live bound by a four week cycle, and this has been compounded by COVID 19 and restrictions. With treatment needed weekly, you can't venture off too far from home.  With treatment needed weekly, it also takes a few days before I feel a little like doing anything.  With treatment in a four week cycle, it is also hard to plan too far into the future, when you don't know whether or not your decreasing health and well-being will get in the way.  At the moment we live in "Carpe Diem". We need to really seize each day as it comes.  We need to re-energize, and do things, but I am just tired.

I am also getting tired of my side effects from taking my medications. I really shouldn't complain because compared to most, I think that I have few major side effects, but they are beginning to wear me down. But maybe that's just a reflection of how I feel today, as I write this blog.  One new side effect I am experiencing this time around, is visible is hair loss. I am starting to lose my hair. I am not really a vain person but I have always kind of thought my hair wasn't too bad! Losing it is definitely disappointing and is really the first visual sign of my disease. It is coming out very slowly (which is good), but there is a steady stream of hair loss. With my new haircut, it is not really that noticeable (at least I think so) but I am definitely shedding! My scalp is itchy too and I am constantly touching my hair according to my family, which isn't helping the hair situation at all.

Another side effect is my fatigue. My new chemotherapy meds have definitely made me more tired and less energetic. I am taking more frequent naps during the day. I used to love taking an afternoon nap on the weekend but now my naps seem annoying and far too frequent. This fatigue also seems to be taking away some of my enthusiasm. I am at times less optimistic and hopeful. Hopefully this is just a short term issue. Maybe the tiredness is wearing me down and making me feel blue, but I am just tired. 

On the positive side, because I do believe there is a positive side in everything, in just a few short weeks I will reach the one year anniversary of having being told I have stage IV, esophageal cancer. Although this doesn't seem like something to celebrate, this is really an amazing feat. We are happy and thankful that I will most likely be able to reach this milestone (considering the fact that my doctor only give me three months to a year, if we were lucky). I am beating the average. I am an outlier! I can still enjoy most of what life can offer. This is what we had hoped for. This is a good thing!

I am just tired,  but I am just as determined.

Richard

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

Our Photographer

This week's blog is courtesy of My Michelle .

Our home is filled with photographs.  Some are framed and covering most of the available table tops and walls.  Some are in boxes and stored on shelves, in drawers and under dressers.  Lots are on hard drives and stored electronically.  Many are school age photos of our kids, the trusty photo shoots from Sears, proud memories of proms and graduations (our own and our kids), birthdays, anniversaries and family holiday times together. Images that chronicle important events and candid moments in our lives together.

And then you come up the stairs and turn the corner and you see a collection of a different kind, a gallery sampling of some fine quality photography - mainly wildlife, flowers and birds, taken by Richard.   His other personal favourite images to post are "food", and he has been known for posting on facebook some of the more grand Sunday roast dinners and various baking challenges we've might have gotten up to over the years - and there were many!  He actively posts his images on various social and photo club platforms, some have over 30,000 views. Many are very, very good.  I've encouraged him to sell some of the images, but he is reluctant to do so, and I always wondered why.

I myself am not much of a photographer- I'll take a selfie now and again, capture a moment on my phone of something that takes my eye, but generally that job has fallen to Richard to capture the special family moments and memories.  A role not limited only for our immediate family, but our extended family as well.  We  often tease him, our personal papparazzi, as he was always snapping photos, taking so many, to get that perfect one!  But as life goes, and with so much having changed, people who have left us, looking back through all of the images, we are all so glad we have them, and importantly, that he took them.  

Now the challenge with always being the photographer, is you are behind the camera and not as often in front of the camera. So as much as you are a part of the event, with the eye of an artist,  knowing the people so well, and in that quest to capture the perfect moment, he's not always in the photograph! Richard invested in a tripod with a remote control so in recent times, we were able to get all of us in a number of shots, or we would take turns taking the snaps.

I have always been a little cavalier about photos, happy to have them after they are done, glad I bought all of those Sears portfolios of the kids (I was always a sucker to buy the whole thing!), grateful to have them all and the meaning of life they truly represent.   I've never been a person to create reams of photo albums, or scrapbooks, was always too busy or had other things to do.  As organized and a planner as Richard is, surprisingly he didn't push for this either.  But now we plan to go through those boxes and get things in order, print off some of our favourites that currently exist in the digital world, and give some away to others who may enjoy them and take comfort in "remembering when"

Now I get it, especially as you face how fleeting and fragile life can be, the value of capturing those photos. I am so glad he did.  I also get why he doesn't want to sell some of his more artistic ones.   They are a part of him, the things he saw that had some beauty or interest to him personally, something that spoke to him.

Keeping his love in our photographs, my photographer.  

             

Richard's Flickr Photo Gallery

Love, Michelle

Fireworks - It's not what you think!

 This week's blog post was written on Tuesday, June 30th.

I am writing this blog post sitting in my chemo chair in the cancer centre on this glorious Tuesday morning. This week I was fortunate to have a chemo chair by the window overlooking the beautiful newly planted hospital gardens, with a blue sky and the sun shining so brightly over the town of Newmarket. If I wasn't sitting here in this chair right now, I would most certainly be sitting by our pool drinking my second cup of coffee, talking with Michelle and watching the birds in our backyard take their morning bath in our birdbath. Being here, stuck in this chair, gives me lots of time to think, contemplate and write.  My treatment today will last 2.5 hours. I am currently in my second round of treatment in this new series. My new chemotherapy plan calls for weekly chemo infusions in a three week cycle. Every fourth week I have a week off. Yay!

I found out that I don't need a PICC line installed on my arm this time. This means no bottle buddy ! I sure don't miss him. (For those of you that don't know who bottle buddy is, it was the nickname given to my portable chemo bottle that I had to wear for a week at a time during my last series of chemotherapy). Having no bottle buddy means that I can still go swimming, take showers without assistance and wear short sleeved t-shirts. Wonderful news for sure, especially over these hot summer days. For the moment, I am free to enjoy all that summer offers.

Internal Fireworks

My side effects this time seem to be a little harsher. The days following my treatment have been tiresome. I'm not as energetic (hyper) as I usually am. I seem more irritable and 'grumpy'. At times I have what can best be described as 'mini fireworks' happening inside my body. These little 'sparks' or 'zaps' seem to be most intensified in my legs & arms but sometimes they occur throughout my body. They are not really painful but do cause some discomfort and are surprising at times. It's like I am having my own mini Canada Day fireworks display going on inside my body, lol.  Luckily, so far, I still don't have any nausea or vomiting. This is great news to me.  I also have infrequent numbness in my arms and hands, but overall I do feel fortunate to still have mostly minor side effects at this time. We shall see how it goes as we continue these treatments. Fingers crossed it stays this way.

As I sit here in my chair, I sometimes sneak a little peak at the other cancer patients in their chairs. It is really hard not to do this as you are literally sitting directly across from another patient and there also five others in close proximity. Why are these chairs always full? It always amazes me the number of people that are here. I arrived at 8:30 a.m. this morning as one of the first patients to be seen and by 9:15 all of the chairs were full. There is definitely not a lot of privacy here. Sometimes you see other cancer patients sneaking a peek back at you too. Your eyes make contact for a brief moment. What are they thinking? Probably the same think that I am thinking, why are you here? As I look around the room at some of the other patients receiving their treatment, many of them look very frail, quite pale and seem exhausted from their treatments. This makes me feel like an imposter. I on the other hand have a nice summer tan happening and am generally quite chipper during treatment. If you saw me, you could never tell that I have cancer. This reminds me how important it is to remember that we can't always see the burdens that others are carrying with them. It is so important to treat others with kindness because you don't know what others are going through.

As the time passes in the chair and I sit here listening to music and continue to write this blog post, I hope and pray that these treatments are all worth it. Will they really make a difference? I am openly agreeing to have toxins administered into my body to fend/fight off my cancer. Will they help to stop the spread of my disease? Only time will tell. Right now this is my best and only defence in this important fight. 

It's time to keep calm and carry on! I only have a few more minutes left in treatment until I can enjoy that cup of coffee with Michelle in the backyard! This morning, with you, having coffee.

Richard

Together Is My Favourite Place To Be

This week's blog is courtesy of My Michelle

I am sitting and writing this little note with my laptop on my knee, outside, my feet  up on an ottoman and looking out over our backyard.  What a view!  Our gardens have really come along this year, and with most of them being perennials, we are just getting ready for the summer time show and next round of blooms now that the peonies are fading.  Richard is lounging on the sofa beside me, finally taking time to relax and rest a bit - admiring all of his hard work.  He is my chief gardener, flower bed digger upper,  and all around pool maintenance guy!  It's a hard thing to get him to slow down and rest.  He is always up, busy, finding something to do, or fix, or organize.  But you see, this week we have entered into the second round of chemo, and this is hitting him a little harder than the last series.  A few more side effects, a bit more fatigue, and well the acknowledgement really of the need to slow down, just a bit.  I must admit it's hitting me harder too emotionally.  This week I find too, that the kids  are a little more sombre, a little more considerate and checking in on their dad.

We've been planning a few day trips to visit some of our favourite local spots, with the next one on our list to be the beautiful Niagara on the Lake.  We had a lovely day planned for tomorrow and are just discussing should we go or not.  Our conversation is going something like "Well, it is a bit of a drive, we are kind of tired, what will it really accomplish".  We need to be careful as he is immunocompromised and of course be in consideration with the ever present risks of COVID-19.  But at the end of the day, we are hoping that a change of scenery, maybe a stop at a special little hat store (I want to buy him a hat!), pick up a bottle of wine or two and just getting away, will give our spirits a little lift.  Sometimes you just have to put one foot in front of the other, venture out and go for it!    

We certainly had plans for more grand adventures, more travel, more experiences in far a way places.  While at times we are disappointed that things are not quite working out the way we planned,  I have to say,  all of that really doesn't matter, not really, because together, well that's my favourite place to be.

Love 

Michelle

SCAN-xiety 2.0- Unwelcome News

Previously, in my blogpost entitled SCAN-xiety, I talked about the rollercoaster ride cancer patients and their families go through regarding tests and scans. In that post I described the intense emotions that each test cycle creates for me personally and for my family. It all starts with the worry and wonder leading up to the test. Followed by the anxiousness on the day of the test and finally the concern and the dread of the possible results or outcomes from the test. I must say that waiting for the test results is definitely the most challenging part. Hence the term, SCAN-xiety. 

Last week, I had my regularly scheduled CT scan (which I have booked approximately every three months to keep us and my medical team up to date on the progress of my treatment). It was, like previous scans, fairly routine except perhaps for the new hospital protocols that are in place due to the ongoing COVID-19 issues.  The CT scan itself takes about 15 minutes. The machine pushes you into a cylinder tube that is rotating. It tells you to hold your breath for five seconds (it seems longer than that).  The platform then moves you slowly out of the tube (while you are holding your breath). This happens a few times. Fairly painless overall, except for a few slightly claustrophobic panic moments in the CT scan tube perhaps.  And then you wait! Waiting is painful, not literally but emotionally. 

Usually you wait until your next scheduled appointment with your oncologist to get the scan results however a few days after my scan I received a call from the hospital to indicate that my oncologist wanted to book a phone consult with me.  This was a week earlier than anticipated to discuss the results, which is not usually a good sign. Our family's anxiety levels immediately starting rising after getting off the phone. 

Unfortunately my early phone call was not good news. My most recent CT scan results had shown that my first line of treatment, which had been successful up until this point, was no longer controlling the spread or stopping the growth of my disease. My oncologist indicated that it was time to move onto the second line of treatment options. 

With our medical team, we are now in the process of determining our next steps, which will definitely include a new round of chemotherapy, a new cocktail of chemo drugs to fight this disease.

However disappointing and discouraging this news is for me and my family, we fight on! It is very hard to reconcile this news, with outward appearances and how I feel overall.  My energy level is good, my appetite is good, my outlook is hopeful and I continue to do most all of the things I normally would be doing.  We stay positive and we hope and pray for better news to come. 

We will not give up!  

"Being challenged in life is inevitable, being defeated is optional" ~ Roger Crawford

Richard

Remember When.......

This week's blog comes courtesy of My Michelle. 

This coming week, Richard and I will be celebrating 32 years of marriage.  You know how people always say, "where did the time go", "it seems like it was just yesterday", or "you haven't changed at all".  Well a few weeks back, Richard and Jonathan rigged up our old VCR and we watched our wedding video from 1988.  Well, it was definitely 32 years ago and  we definitely have changed!  But, it was really so much fun to talk to the kids about the "back story" and relive the memories of that day.  

There is something so magical in memories and telling stories of times gone by to your kids.  Its an enduring thing in families I think.  I know my brothers and sisters and I loved to hear my mom's version of how she and my dad had met back in the 50's, how they had met at a barn dance, how he had asked her to dance and she turned him down!  Dad would tease her and tell another version of the story, and well, long story short and after much eye rolling, thank goodness dad persevered and the rest, as they say, is history!  We were digging through some old documents the other day that Richard's mom had saved and came across some love letters from his dad to his mom that she had lovingly saved.  So happy we have these memories to share and pass on to our children, the stories of our lives.

One of the great things about our wedding video is how it captured the music, the dancing, all the fun that we remembered during our reception. Seeing all the disco dance moves, watching that crazy conga line, all of the bridesmaids in their beautiful blue dresses swirling about the dance floor.  Pure Magic!  Re-living the beautiful speeches, words of advice and wishes from our loved ones.  Then there we were: so young, so optimistic, the world at our feet.  Richard had graduated from teaching at Queen's the day before, and I had just completed my third year. We were in such a hurry to get started and share our lives together.

I guess it is only natural heading into this anniversary to be particularly thoughtful and remembering days gone by.  We have a shadow hanging over us all for sure, as we battle through these days.  For us it is a battle for time and preserving Richard's health.  We have scans, tests and treatments that create a great deal of anxiety for all of our family. It is as much an emotional and mental battle as it is a physical one.  What helps?  As you surely know by now, we love music and dancing.  One of our favourite songs is an oldie by Alan Jackson called "Remember When", a tear jerker for sure.  It is truly a song suited to anniversaries and about a love and life well shared.  

If I could, I'd still do it all again!  

Put on the music Richard, meet me in the kitchen and let the dancing continue!

And we'll remember when.

Love Michelle

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

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

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

  

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