Holiday Traditions

This week's blog comes courtesy of My Michelle.

One of the big traditions in our house, like many of yours I am sure, is the setting up of the Christmas lights outdoors and on the house.  Our house is quite high, being a two story, so it has been very rare that we get up to the second floor or light the peaks.  I remember one year Richard and I thought we could do it - well we did, but let me tell you it was a lot like that Chevy Chase scene with a leaning ladder, a knot full of lights, and a few tempers might have flared as in the movie "Christmas Vacation"!  

This year the kids wanted to go all out and "deck the halls" so off we went to Canadian Tire and loaded up with a new colour scheme, new lights and the requisite extension cords.  Our son Josh was adamant he could get up the ladder to reach that second floor peak over the garage and the living room.  We had our hands full keeping Richard off the ladder.  There he was with his chemo "bottle buddy" infusing under his jacket, and right in there with the cords, lights and votes of confidence.  No way he was being left out of it!  I, of course was panicked that someone would fall, but gamely took my turn as one of the "spotters" on the ladder.  I have to say the guys did a fabulous job and the the lights were so beautiful under the snowy night sky this week.  There were no falls, just a sliver or two, so a good experience overall. Looking up at those peaks though, I'm thinking maybe those lights might end up staying up for a season or two!

I know that the kids will want me to start to get the other holiday decorations up this weekend.  It is always such a fun time to reminisce as we dig out all the old decorations, some we've had for years, some the kids made, some that were special gifts and many we have collected as we have travelled on various vacations around the world.  We  still have the original "Our First Christmas Together" ornament, as well as the ones that were given to us for "Baby's First Christmas".  So many memories of so many wonderful Christmases past.

Another tradition that our family is eagerly awaiting is the holiday baking.  Richard's appetite is hit and miss at times these days and I'm always looking to find "that thing" he loves and would enjoy.  He has put in his request for some of his favourites and I'll have to get going on all of this soon!  

I have to admit, I am not really in the Christmas spirit this year.  I am going through the motions:  I watch the movies, I help with the lights, I do the decorating, I plan for the baking.  This is a year unlike any other for so many of us.  Our traditions will be a little different, we may not be able to be under the same roof with all of our family and friends. We'll all just have to dig deep, no matter what our circumstances, and find a way to find the joy and enjoy the moments we have.

One thing I know for sure, is that this old house, sure will be looking good!

Wishing you joy,

Love Michelle

What's for Dinner?

I don't know about in your household, but at the Erdmann's, "What's for dinner?" is a daily question that we ask ourselves.  It seems to be a daily dilemma for our family. With five adults living under one roof, all with varying tastes, appetites, diets and opinions, it is a lingering question that takes some time to answer each day. Often we are left with 3 different opinions and find it difficult to come to some form of consensus. In this case we sometimes just give up and let everyone order their own take out to solve the problem. Our kids are "Uber Eats" specialists. I can't bring myself to use these food delivery services, I find them wasteful and too indulgent (although I must admit, we have asked our kids to order on our behalf a time or two!)

I wish someone would have told me that being an adult/parent meant that you are forever cursed with this daily dilemma. Deciding on and making dinner is a chore! Remembering to take some meat out of the freezer in the morning to give it time to defrost in time for dinner is a chore. Chopping up all the veggies for the meal is a chore. I can see why those meal preparation companies are doing so well. Sometimes you just don't feel like preparing or cooking a meal. 

Michelle and I are pretty easy going and would be happy with a bowl of soup, a sandwich or some cheese and crackers for dinner. Unfortunately our kids don't feel the same way. We are also happy to have leftovers for dinner which makes the decision easy for us, at least for one night. The problem, again is that our children don't like leftovers either. This really limits your options when you are trying to make everyone happy.

We've tried different strategies to share some of the "what's for dinner" angst with our kids - having each person responsible for a day of the week, having them help with menu planning, taking them to the grocery store to help stock the pantry to try and ward off the "there's nothing to eat in here".  While we love our snack foods as much as the next person, we really try to buy building blocks for meals, or ingredients, so it's true - there's not alot of prepared foods that you can just grab and zap!

The ''what's for dinner" dilemma is even more complicated now with my cancer diagnosis. Having esophageal cancer has limited my food options in varying degrees. In one of my earliest blog posts, Food, Glorious Food, I talked about how food impacts our lives in so many ways and how you should not take eating for granted. I am once again beginning to struggle with some of my favourite foods. No more steak, roast beef and even sometimes chicken (depending on how it is cooked) for me. I do miss a deliciously cooked steak. Sometimes I cut off a very small piece and savour the flavours.  I find that cutting up my meats into smaller pieces for chewing helps. Sometimes, my hiccups remind me to slow down. Often it is Sophie reminding me to take my time or to cut smaller pieces, as old habits die hard. I have always been a fast eater. I guess it comes from being an educator and school administrator, always eating on the run, living by the school bell. 

My family has encouraged me to start drinking protein supplement drinks again to ensure that I am getting enough protein and vitamins in my diet. I must say that they bring back very bad memories! I have been avoiding them. When I was on a liquid only diet in the early days of coping with the effects of my disease, these drinks were my main source of food, along with pureed foods and soups. I really hope I don't return to those days again. I still avoid most soups and don't really enjoy them the way I used to anymore. 

I don't think that we will ever solve the "What's for dinner" dilemma in our household. You may have a similar problem in your house. I am fortunate we have some good cooks in the family, so once we do decide, it's usually very good!  It's just coming up with the ideas that is getting kind of "old".  Tips and suggestions are always welcome. 

What are you having for dinner tonight?  

Please just don't say ...."Soup's on!". LOL

Richard

Finding Distractions!

Well I did something that my family told me I should not be doing! In fact they have been trying hard to change my mind about it. One year after I retired from my role as Principal, I have recently decided to rejoin my school board on a part time basis. I am now working remotely as a retired Principal on Contract, supporting the implementation of virtual schools in our school board. This is no easy task. The entire virtual school program is growing rapidly as many families have chosen to have their students stay home and take their classes online due to COVID-19. All education staff are working tirelessly to make this new online learning work. Virtual schools are definitely a work in progress, with all new structures, protocols, and procedures that need to be created. It is like building a plane while flying it! I am proud to support my colleagues in some small way to make it as successful as possible.

You may be asking, Richard are you going crazy? Why would you want to return to work in your current medical condition? Why give up your new carefree lifestyle and freedom? Why would you want all the potential added stress and responsibility again?  Well the answer is quite simple, it is a distraction!

As I have previously mentioned in several blogs, when you get diagnosed with cancer, your whole life is turned upside down. All of your thoughts and actions seem to be focused on the disease and how to manage it, control it and try to get rid of it! Your days become filled with appointments, treatments and coping with side effects. When you are not focused on your cancer care, you have a lot of time to think and reflect. What do you think that I am thinking about most during? You guessed it Cancer! It's hard not to. 

I do have other distractions to help me, including my new loyal buddy Lily, our new puppy. Many of these distractions are much more fun and exciting then working. However, they only last so long and become boring after awhile. As well, winter is coming and my selection of distractions decreases significantly. Being immunocompromised means I basically have to stay home due to the ongoing worry of COVID-19. I do miss my friends and the chance to go out to a restaurant, do some non-essential shopping and visiting others. Staying home gives me a lot of time think. No matter how hard I try, my thoughts always return to my cancer. I think about how it is impacting my family and what the future holds. I worry about the future. I guess this is understandable. I like things to be organized, planned out and somewhat predictable. This disease has blown all of that out of the water. No predictability anymore!

Working part time gives me a purpose, a responsibility, a way to distract myself. It also allows me to use my years of knowledge to support others at this difficult time in education. My kids say that my stress levels have increased and that I am more irritable since taking on this new job. This may be true although I think it is the medications. I take my job responsibilities seriously and want to do a good job. The fact of the matter is that I would be stressed out regardless. Besides this is a different kind of stress, one that gets the adrenaline going in a good way.

It is part time after all, and will only last for a few months. It will keep me occupied and distracted over the winter months. Best of all, it will take my mind off my medical circumstances, even for awhile. I think that makes it worth it!

In the meantime, I will continue to look for other, more exciting distractions. Until then, this should WORK.

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

Our Life is like a Roller Coaster!

This week's blog comes courtesy of My Michelle. 

As we navigate through this crazy journey we are on, there are no better words to describe our life right now, other than to say "life is like a roller coaster".  We  seem to circle around and around, with dizzying climbs and what feels like free falls, only to start to climb again. We go up and then we go down and each ride seems to get bigger, faster, more complex and scarey.

Richard has shared over the last few weeks that he has been off treatment, as we have been tested and biopsied and explored clinical trial options. I say "we", because honestly, although it is him that is the one being tested, I swear I feel almost every one.  We had been going back and forth into Toronto for various tests, not the least of which was a late night CT scan.  Who knew they would do these procedures late at night for non emergency patients?  I was driving him home after the procedure and we were heading up the DVP,  both tired and in our own thoughts when he quietly said to me "how did we get here?".  I knew he didn't mean literally here on the DVP, but rather how we had reached this moment and having to deal with this in our lives.

Unfortunately our week didn't start off well as we got "the call" that Richard screened out of the clinical trial.  While we were disappointed, we had previously talked as a family about how this was a possibility, how we were concerned with Richard being off chemo for a month and our need to have that conversation with the oncologist and to get on with the next steps.  Despite knowing it was a possibility to screen out, we teetered at the top of ride and then we definitely felt like we were in a bit of a free fall.

Within minutes our phone rang again with a call from his team at Southlake, appointments and infusion times were set with the next line of approved care being booked.  The free fall  slowed and we felt somewhat reassured that there is a next step for us, that there is a plan and there are still treatments that can be taken.  

Richard looks and feels very good, although tired, but honestly who wouldn't be!  Of course we are very worried, but he is pumped, he is determined, he is ready to get back at it this week and show that cancer who's the boss!

So here we go, back on the roller coaster, in that front car, hearing that click-click-click as we climb this next challenge on our journey, me white knuckled and holding on, Richard with his hands in the air and away we go (again)!  

That's how our life is right now, a roller coaster ride.

Just hold on!

Love

Michelle

Waiting!

Waiting is hard for all of us. We spend a great deal of our lives waiting. Waiting in line, waiting for others, waiting for important dates and events to come up. Sometimes the anticipation of waiting is exciting and even an adrenaline rush, however when you are a person with cancer and waiting for test results and next steps in your cancer journey, it is not like that at all. It is worrisome and draining. 

As I wrote in my previous post, Hurry Up and Wait, waiting is just a part of life as a cancer patient. You need to build patience. As a generally 'hyper' person, this is something hard for me to do but I have, over the past year, become better at waiting. 

There is nothing that I can really do to change it. This is my current state of affairs. I am currently anxiously waiting for the doctors to review my tests and procedure results and then get back to me with next steps. 

The problem with waiting when you have terminal cancer is that you have a finite amount of "wait" time available! Each day you wait is one more day for the cancer to grow. I have been off chemo now for a full month. My worry is that my tumours will start to grow again or are already growing! I need to get back on treatment as soon as possible. Time is a precious and a limited commodity for me and my family.  Time is of the essence!

Our hope is that the results will be favourable and I will be a good candidate for the trial so we can get started on it A.S.A.P.  If I am not a good candidate, I will them return to my oncologist at Southlake and see what other options are available to me. Doing nothing is not an option for me.

But for now, I'm still waiting, .....for just a little longer.

Postscript

I really enjoy reading the comments that people leave on my blog. They tell me that others are connecting with the topics and relating in some way to my content. It always puts a smile on my face to read them. This past week I received a comment on one of my blog posts entitled Here we go again!, that I have to acknowledge. It was from a former student of mine (who is now in his mid to late thirties I would guess). He was one of my students way back during my first few years of teaching. It was definitely a welcome surprise and so touched me that he would take the time to read my blog and comment about what a difference I had made in his life. Wow! Just wow.   

This reminds me that we need to take the time to let others know what a difference they have made in our lives. These small gestures, take just a few minutes, but can make the world of difference for the person receiving them. 

Consider taking a few minutes and let someone know how they made a difference in your life today! You will not regret it.

Richard

Happiness is medicine too Dad!

Well I said I would not do it. There was no possible way. It just wasn't the right time. How could we possibly add more responsibility and stress to our already busy family lives. With all my tests, procedures and treatments this week and possible ongoing treatment in downtown Toronto, this just wasn't a good time. I was even able to come up with many more valid reasons why this was not a good idea. We already had so much going on, how could we add more to the mix? It would be just crazy. I was so proud of myself for resisting the 'family pressure' - the constant texts and Instagram photos of adorable cocker spaniel puppies. Why was I the only one standing strong and firm. No puppy for the Erdmann family!

Well that didn't last long! All three kids and Michelle kept sending me adorable Instagram photos & videos of cute puppies. Soon I too started to share puppy photos back and forth with the family. There were so many cute and adorable puppies to share. Those puppy eyes. They can be hard to resist. Next Sophie started looking up cocker spaniel breeders and sending information on available puppies in our area. Soon she had us hooked into an appointment to see a breeder in nearby Tottenham. Just to look, only look, at two puppies that were for sale. I agreed to only look! Well we did the unthinkable, we got a new puppy!

We are so pleased to welcome Miss Lily Rose to the Erdmann home. She is absolutely adorable and her puppy eyes are melting our hearts already. It is amazing how she, in such a short period of time, has already transformed our family dynamics. She has somehow helped to lift the cloud hanging over us. Lily has given us all a reason to smile, to laugh and to spend more time together as a family. She has provided us with a wonderful positive distraction when we needed it the most. In less than a week, our sweet Miss "Lily-pad"  has provided our family with so much happiness. As Josh was quick to point out, "Dad, happiness is medicine too!" This is so true. Happiness & laughter really are a form of medicine. It changes your perspective and helps to distract you from your troubles.

For those of you with pets, especially dogs, you know that they provide truly unconditional love. Nothing puts a smile on my face faster than those cute puppy eyes staring at you and that little puppy tail wagging vigorously when she sees you. It was definitely love at first sight when we met little Miss Lily. She is just what the doctor ordered for our family. She is providing the spark of happiness and distraction our family needed. It is so wonderful to see the kids smiling, snuggling her and laughing at her antics. Interestingly, we think that Lily seems to have that sense that something is just not right with me. She has already formed a strong bond with me and snuggles and naps on my chest. This in turn calms me down.

That being said however, we will never forget our beloved family dog Darcy. He was one of a kind. There is not a day that goes by that we don't think of him or something happens that reminds us of him. He will be forever in our hearts. Darcy was my faithful companion. He was apart of our family for over fourteen years. Little Miss Lily is already melting our hearts and finding her own special place in our family and in turn, she seems to be developing a special spot for each one of us in the family as well!

Happiness can take many forms. The love of family (including pets) is one of the best ways to de-stress and distract from your troubles. When we start to get to that darker place and discouraged, seeing that little puppy face, just lifts your heart.  It really is one of the best medicines Josh! I'm so thankful that I got 'persuaded' to add Miss Lily to our family. 

Have a great weekend everyone. Hug your family! Hug your pet!  

Now if only she would poop outside and sleep in later than 4 am!  Ah, but we do love ya little Miss Lily!

Richard

Here we go again!

Determination. Optimism. Hope. 

Here we go again! My initial visit to see if I was a good candidate for the new drug trial at Princess Margaret hospital was promising. The team at the hospital felt that I would be a good candidate for the study. Fantastic! Now I need to go for a series of tests and procedures to determine my eligibility and hopefully begin treatment in the next few weeks. The sooner the better for me.

In my previous posts, Needles, scans and tests oh my! & Hurry up and wait! I talked about the many tests, scans and procedures that I needed to undertake prior to my treatment beginning. Now it is like I am starting over from scratch again! On the positive side, I know now, from experience, what each of these tests are, how they make you feel, so I am more mentally prepared for them, then the first time. Also they are really a 'means to an end' to get started up again on treatment. Time is ticking! I don't want to wait much longer and give my cancer any more of an upper hand.

Travelling to and from the Princess Margaret Hospital and the Toronto General Hospital will require more travel time and patience for sure. I was so fortunate to have my previous treatments so close to home. I will however go wherever necessary to fight on. In these times of increased COVID precautions, Michelle is unable to come into the hospital with me for most of these tests and procedures. She will come as she can - park and wait is our new mantra!  Parking is expensive and hard to find in Toronto, not to mention free shorter term parking is practically non-existent.  Michelle rotates spots (to avoid getting a ticket LOL), timing it just so to pick me up when I am done.  This adds an extra layer of complexity for us, but we will manage through it.  We do miss Southlake!

This year, as a family we decided to pool our money together to purchase tickets for the Princess Margaret Hospital lottery. I have bought tickets in the past on my own but this year we bought a five ticket "family" pack. Hopefully we have one of the lucky tickets. It is great to support ongoing cancer research (especially at a hospital that is helping support my cancer journey) and who knows, we may even win one of the many great prizes available. Perhaps we will win the downtown furnished condo and it will solve all of our commuting issues and concerns. Wouldn't that be perfect. LOL

Wishing you all a wonderful Thanksgiving with your families. For sure things are a little different for all of us this year, and even if we can't all be together under the same roof, we give thanks for family and friends.

I am thankful for my family and friends, and really I am thankful to say "here we go again!".

Richard

 

Birthday Season, AKA Cake Month!

This week's blog comes courtesy of My Michelle.

October is Birthday Season at the Erdmann’s, AKA Cake Month. 😊

Between October and early November, our 3 children and myself all celebrate our birthdays.  At times it feels not a week passes by and we are blowing out candles, singing “Happy Birthday” and cutting yet another cake.  When the kids were small, things often doubled up yet again, as we had kid parties with all of their friends, and then we would have a family celebration on the day.  Over the years we’ve tried things to try and decrease the sugar rush:  combining parties, foregoing cake for at least one of us (usually I would volunteer as we were totally caked out by the time my birthday rolled around), decreasing to a few cupcakes, substituting fruit or ice cream and even going down to “just a slice” rather than the whole cake.  But no matter how you slice it 😊 it has become lovingly known as October is “Birthday Season” for the Erdmann’s!  Thank goodness Richard’s birthday is in June, it gives us a break and something to look forward to and by then, we are surely ready for cake!

We have had a few memorable cakes that stick out and have become “Erdmann family legends”.  There was the year we had all of these little Barbie dolls whose “skirts” were made of sponge cake and with each doll of a different colour of fondant icing, from soft pinks to lavender and powder blue.  There was the year we had a 3D Teddy Bear cake and full on teddy bear picnic.  Then there was the year we had a 3D pirate ship, 100% edible, even down to the “gold bullion” and treasure chest – even the sails were edible.  That year we had the party at a bowling alley and people came from all around the building, to get a look at this cake.  The kids still talk about that one, and Josh who is turning 24 this year, asked if he could have a repeat!  I remember the year we also had a “James Bond” theme the year Casino Royale came out, now that too was a cake to remember!  Sometimes I’ve made the cake, (I love to bake), and many times we let the professionals handle it.

The trouble with having birthday season, is that because each week it’s someone’s birthday, sometimes the pure fun and joy can get a little lost in the shuffle – especially when as parents we  were working full time, the kids had full agendas with school/university and after school activities/jobs, throw in work travel and commuting and well sometimes it was like “let’s just get this done!”.  We knew this at the time, and tried to change it up, but sometimes you just got sucked into that birthday planning vortex!

This year, we’ve been trying to slow things down a bit, trying to savour each special moment and memory.  This year we have decided, everyone gets cake (including me, whoopee!), and we are making each birthday a special one, highlighting the one day for the person, and making sure that we are making those special memories.  With COVID and what we fear is a 2^nd wave, with Richard on treatment, we’ve been especially careful to keep our bubble small.  Birthdays this year have been just the five of us, fairly relaxed, and trying to make a few dreams come true.  

We count ourselves extremely fortunate to be celebrating these days together and we hope for many more.  We have been fortunate that Richard’s treatments and procedures seem to have been scheduled all around the birthday dates, but leaving those key dates free.  Last week Richard wrote about changes to his treatment, the need to pivot and move to Plan C, and our hopes to be considered for a clinical trial at Princess Margaret hospital.  We were all feeling discouraged and disappointed at the lack of options and next steps out there.  Now, it feels like a little bit of hope has been injected into our lives as we head into October and birthday season.  I am happy to report that those assessments for him and the clinical trial are underway!  We just need to stop that cancer in it’s tracks and slow it down,  so we can have more time, more celebrations and more cake!

I am so happy and grateful that we are celebrating yet another October and Birthday Season with Richard and our family, and I look forward to my double fudge chocolate cake, and it’s many candles.  I’ve earned every one!

I can’t wait to celebrate with you,

Love Michelle

I get knocked down.... but I get up again!

The weeks and months seem to be both flying by and never ending at the same time right now. It was hard to believe that my three month time frame for check up testing was fast approaching again. My oncologist ordered another CT scan to check on the progress of my second regime of chemotherapy treatments. Previously, in my blog posts SCANxiety and SCANxiety2  I  talked about the worry and anxiety that surrounds these tests for both the cancer patient and their families. These tests can bring hope or despair.  What will my latest test results be? 

Unfortunately it resulted in mixed results.  My cancer seems to be very stubborn and uncooperative!  It is still progressing despite the current treatment being given to suppress or eliminate my tumours. It is time again to pivot and cycle to the next stage, to control the spread of this disease. Plan C here we come!

At this time I have been referred to the Princess Margaret Hospital in Toronto and the potential to participate in a clinical trial with a new drug targeting my form of cancer.  We are hopeful that it will be something that I will be a suitable candidate for and able to join as soon as possible. My oncologist seems to think that I am a good candidate for this study and is advocating for me to join with the team at the hospital.

We definitely have mixed emotions at this time. On the one hand we are very disappointed and heartbroken (honestly) that my current treatments are not working or have stopped working. Although the side effects were increasing with this treatment, it was still manageable and attending Southlake for these treatments was really stress free for our family due to its close proximity to our home.  On the other hand, we are happy that there is another possible option out there to cycle through to help control my cancer.  Princess Margaret is a world renowned hospital for treating cancer and we would be fortunate to have this level of expertise and care supporting my treatments.  Fingers crossed that it all works out. Stay tuned. We will give you an update when available. 

You must know by now, that I am just as stubborn and uncooperative as my cancer seems to be. I will not give up! I will not stop until every option is exhausted and we'll keep on pivoting and cycling on. 

Take that cancer!

Richard

One Year BLOGiversary!

Today marks the one year anniversary of My Personal Cancer Journey Blog. I really can't believe that it has been a year already.  To be honest, I really didn't expect it to reach the one year milestone but I am so thankful that it has and that I am still able to write and share posts and updates.

I decided to start this blog to share some of my cancer journey updates with family, friends and anyone else that was interested. It was a way to keep others informed and up to date with my journey as many were asking for updates and news. To my surprise it seems to have touched many of you in some way or another. I continue to be thankful for the comments and notes of support that have followed my blog posts. Words of encouragement, notes of support, personal comments about how a blog post has touched them in some way. These notes and comments mean so much to me and my family. It is so special when someone shares their personal link, connection or story with us about a blog post that we have shared that resonated with them. It continues to amaze me how cancer really does touch us all in some way.

My blog focus has always been on remaining positive and hopeful but also at the same time sharing the truth about this terrible disease. Despite the ongoing ups and downs that this journey presents, staying positive has been my one constant focus areas. I hope that I will be able to continue to share my journey with you for some time to come! 

Thank you all for joining me along this journey. It means the world to me to have you by my side.

Richard

Back to School Thoughts

This week is 'Back to School Week' for students, staff and families. Being an educator myself for over 30+ years, I can't help but think of my education colleagues that have been spending the past few weeks planning, organizing, hiring etc. in preparing for and in anticipation of the start of the school year. The general public doesn't really realize that the weeks leading up to the start of school are always busy and stressful for administrators, teachers and educational support staff alike. I can only imagine the heightened stress and anxiety they are feeling this year with all of the uncertainty, unknowns and possible health and safety concerns that they are facing and will have to deal with over the coming weeks and perhaps months. 

Back to school marks the end of summer and the start of fall. I can't believe how much has changed in education this past year since my retirement and cancer diagnosis. While I have been focused on my personal health struggles, the education world has been turned upside down. This school year will be like no other. Normally the school year has a familiar pattern and flow to it. It is generally predictable and most approach the start of school with excitement and anticipation. I am not sure this will be the case this year. Having responsibility for the safety and security of students can seem daunting at the best of times, but with the possibility of COVID-19 ever lurking, it has been taken to a whole new level. I salute all of you that have risen to the challenge and are working hard to minimize the health and safety concerns for all. You all rock!

Back to school for teachers/administrators is actually quite similar to that of the students. We too get our new back to school outfit and have that nervous anticipation for the first day of school. Most of us have back to school dreams (or nightmares) for a few days leading up to the first day. I know I did. Even now in retirement I am still dreaming about going back to school--when does that end?   

We always would take a back to school photo on our front step of our three kids - bright and shiny, new outfits, new shoes, new backpacks - excited to start a new year.  We still do this today, with just one left in university and looking toward an unusual year of online studies, we still took the requisite "back to school" photo.  I really need to line these all up in a photo essay and see how they have changed over all of these years.  A new project for me!

Last year we started the tradition of gathering up education retirees for a first day of school breakfast. This is my second year joining others for this special breakfast. We celebrate our freedom and wish our colleagues well as they start off a new school year. We also have a little fun by 'rubbing it in a little' that we get to linger over coffee. No "bells" for us anymore! I'm so thankful that I still have the energy to participate in these special moments with my colleagues and friends.

I do miss my job as an administrator. I miss interacting with staff and talking with students. It is amazing how young you remain when you intermix with students on a regular basis. I also miss the bus-y-ness of the school day. My days are now are filled with appointments, tests and treatments.  Working in education has been a wonderful career. I am so glad that I chose that career pathway.  Still I'm not sure, given the current circumstances, that I will miss it that much this year! It will be a wild ride this year for sure. Crazy times.

The one thing I am sure of is that senior admin, administrator and education staff will do their best to ensure a safe return to school for students and staff. By nature, staff are caring and thoughtful and will do whatever it takes to prepare for and adapt to changes needed to continue safe learning for all students. This return to school is like no other. 

Wishing all of my education colleagues all the best this school year.

To my fellow retirees, who wants to go for a (physical distance) coffee? 

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