Smiles from the Heart

Todays blog is an entry by me, Michelle as this week it is my turn.

I struggle with how to start to write this and share this very personal aspect of this part of our cancer journey, an update of Richard and of our family.  To date, we have been fighting so hard to battle this disease and enter into this next phase with strength, dignity, with gratitude for all we have, and yet always still with hope.Things have become increasingly difficult as the disease progresses and Richard's health declines, especially over the last few days.  As you know he loves music, and so I often play music while we are sitting together and one of his favourite artists is Anne Murray.  As I worked through her playlist, one of the songs came on called "You Needed Me".  To be honest, I couldn't hold it together because the lyrics were as if they were written just for us and just for this moment,  reflecting upon everything Richard brings to my life and what he means to me.  

One of the very private things, is that throughout all of this, Richard wanted to make sure that I would not be burdened with so many of the details that come in life and management of our household and that everything is set and to give me strength to stand alone, when that day comes.  I have the pleasure to care for Richard with all my heart, with love, with dignity and respect for the man he is.  As the song goes -You Needed Me (but I also needed you).

In addition to music, I do read out all of your comments on facebook, messenger and email to him.  It gives him great pleasure, to hear your messages on how his thoughts and experiences resonate with you, and give you comfort in some small way.  Recently it was a dear colleague's birthday from his first year of teaching, and several  photos of the whole group of staff of that year were posted, circa 1990/1.  I enlarged the photos on my phone and we looked through all the people in the photo, and reminisced about different stories from way back then.  He really enjoyed it and remembered every face. It brought a smile to his face and also to mine.  

Although Richard isn't able to be on social media and answer your messages directly, he has assigned me as his chief "secretary" and I am happy to share any messages and stories with him.   We love to see and read the comments.  Sometimes these memories are private and not to be posted on facebook or as a blog comment.  I do encourage you to send them through as a DM or as an email - I will pick them up and make sure he hears them.

I know that sharing stories and remembering a life well lived and the impact he had on others is very comforting to him and brings a smile to his face.

Thank you for bringing a smile to my heart and to that of our family.  This is especially dear to us now, as Richard is entering into Hospice Care and we focus on maintaining his comfort at this stage of our journey.

Love Always Michelle and family XOX

And These Are a Few of My Favorite Things

This weeks blog post is a collaboration between Joshua and my Michelle, they have helped me jot down a few of my favourite things.

Being at this stage of my disease and in palliative care I've lost the ability to do a few things,  but there are many things I still enjoy. These are a few of my favourite things.

I love and appreciate a nice hot bath. Because I have a few ports and bandages and my trust worthy pain pump, while I can wrap up and do a shower and wash my hair now and again, I only get to take a bath once a week, after I get all "disconnected". So something I really look forward to is taking all of these tubes and bandages off and submerging myself in a nice hot bubble bath. This is the best feeling in the world. Just sitting there and floating around with the smell of lavender can really make me feel alot better.  I say lavender because Michelle and kids loaded me up with bubble bath on my last birthday- and I really do love it.

I also love going out to dinner and eating!  I don't know if you can tell by reading my blog, but the Erdmann's love going out to eat!   Breakfast, lunch or dinner, it really doesn't matter. We have been especially looking forward to eating breakfast on a patio. Eggs benedict, waffles, home fries or anything really! It doesn't matter as long as someone else is making it. Last weekend we drove up to Keswick on an errand and ended up eating lunch lakeside, on the edge of Georgian Bay at a lovely restaurant. It was a heavenly day, the food was good, and the company wasn't too bad either hahaha.  We had my IV and pain pump concealed in a back pack, and I was able to manage the short walk from the parking lot to the patio.  We hope to do it again soon. Breakfast is next on the list. In fact, having such great success with this outing, I've started to book a few more.  In a couple weeks, I look forward to meeting up on the patio with the Ramerwood Public School retirees.  Sorry to all of you who are heading back to the classroom!

Music, music, music - I love music and especially live music.  I'm sure you are like me and really missing this with all of the COVID restrictions we've been experiencing.  Well things are opening up a bit and I can't wait.  This week I was surprised with concert tickets to a band I have always wanted to see. Maroon 5. I haven't been to an outdoor concert in a long time. We've got a couple of seats in the accessible seating area and I'll come in my wheels, and a few of our kids will be sitting a little closer.  Even though I am in the wheelchair section, they should be really good seats. Looking forward to hear music live for once and accompanied by my family. Josh is even going to drive us down as a personal chauffeur/taxi service. Nothing can beat listening to music outdoors and  under the stars.  We have also been having a few small concerts at home, Jon has been working on the guitar for some old Beatles tunes and this has just been great.

And one more thing I just love - sweets!  Palliative care (and I think it's the steroid actually)  has definitely increased my sweet tooth to an even greater extent. I have been indulging in candies and all sorts of sweets that I love. Chocolate goes down really nicely lol.  Interestingly, right now I get lots of cravings for candies I used to eat in the past and in my childhood such as: goodies,  assorted cadbury chocolate bars (you know those little Halloween size, assorted ones?) and black licorice. Thank goodness my family and friends keep me stocked up with baked goods. Everyday I have something sweet. Why the hell not! Lets see what other candy from the past I will pick out for this weekend. In fact, this week our daughter Sophie made some Christmas cookies - I had a taste for it and who says you can't have Christmas in August!

These are a few of my favorite things right now. Having said that, I can't get the song out of my head from the Sound of Music (These are a few of my favourite things), and in fact, that movie is also one of my favourite things!

But bringing things into 2021 ---Maroon 5, let's put some other songs in our head!  Enjoy, I know we will!

"Because I need a little sweetness in my life,  Sugar, Yes please"

Richard

What a Difference Two Weeks Makes!

Well thank goodness I had already prepared the 100th blog and only had a few minor changes and edits or most likely there would not have been a blog ready for last week's 100th edition. Let me explain further.

We have been planning a family vacation for some time now and last week was the week! We had booked one beautiful week at a cottage up in the Haliburton Highlands outside the town of Bancroft. We were all looking forward to it, time away from home, getting back to nature and hopefully some time to take our minds off our life circumstance and just relax and maybe get out on the lake. The weeks leading up to the vacation did not look promising as my aches and pains did not provide me with my comfort and we worried that I couldn't make the car ride and the fact that we would be two and half hours away from the larger hospitals. Michelle even asked if we should postpone or cancel but we make the decision to continue on (we could always turn back or come back home if needed), besides there was a small hospital in the town of Bancroft that we could get to. It would be all right, but I knew she was uncomfortable with the plan. We packed up the car (to the brim, I might add) and made our way. Josh and our dog Lily stayed home because he had to work and we knew Lily would add extra stress at the lake. Josh would be joining us later in the week. 

Michelle drove us all up to the cottage and we made it there in record time. I started to get chills and the shakes in the car ride up (thank goodness for Lily's blanket that we found in the back seat) , but it was a very hot day and we had the air conditioner on full tilt, especially so it would reach Jon and Sophie in the back seat.  We didn't think too much of it, because Michelle was also cold in the car, and thought perhaps it was the A/C.  When we arrived, I did what I could to help them unpack the car, but still felt chilled, so I went straight to bed. I kept saying how cold it was in the cottage, but that didn't make sense as Michelle and kids were hot, and did not find the cottage cold at all.  

I developed a high fever on the first night there, but it came down with tylenol and advil.  Michelle and the kids wanted to pack up and go home, if it wasn't for my stubbornness, I think that is what we would/should have done.  But to be honest, I downplayed it, and said we should try to stay. The fever did go down on Tuesday and we spent some lovely time during the day down by the water (although I did spend most of the day in bed too). I was feeling warm Tuesday night, my temp was just under the fever threshold of 38, but clearly something was not right and at 2 am, Michelle had the kids packing up and on standby ready to go.  She had already scoped out the nearest hospital, but again the temp came down hovering around normal, and I wanted to wait. Actually I was adamant that we wait. I did not want to ruin the family trip.  By Wednesday the fever had returned sitting at the threshold of 38 (it was heavily raining and wet), Michelle came into the room and quietly said, we can be packed up and ready to go in 5 mins - I need you home and in Newmarket. Bad things don't just go away, fevers just aren't a symptom to be ignored.  I finally agreed, and we packed up and came home. To be honest, I just wanted to crawl into my own bed.

After consulting with our medical team  we headed to the emergency department as we were getting quite concerned about what was happening. Princess Margaret Hospital was calling ahead to ensure they knew my medical history and that we were coming.  To make a long story short, after spending fourteen hours (that is not misprint, 14 hours - 13 of which were in a chair and crowded in a waiting room in the ER), I was finally admitted to the hospital.  For 1 hr of the wait, we had an exam room with a bed in it, and there was no way Michelle was going to let them kick us out of the room until I was admitted!  We were able to turn the lights down low and I was able to stretch out and have an ice pack, which helped a lot to make me more comfortable while we continued to wait.

They have done a series of tests during that fourteen hours and now that I've been in hospital as well as running a cocktail of antibiotics. The news that we were hoping not to have to hear (for quite a bit longer), were finally being spoken to us. The tumours were continuing to grow.   I would be moving on to palliative care focused on pain management rather than fighting the disease itself any further.

I am still in the hospital for a week now, trying to find the correct combination of painkillers to live as comfortable a life as possible and make sure the antibiotics are fighting the infection.  I want to be at home, and for a long as possible.

As devastating & disappointing as this news is for me and my family, we can still be proud of the battle we gave. Like so my people  before us and so many long after us, it is worthy to try and fight it, there are many medical advances, but cancer is an equally worthy opponent. 

We are now in the process of palliative care and with what this  means for me and us, as a family. In the weeks and hopefully months to come we will shift the focus of our blogs in this direction.

We hope you will join us!

Richard

Lean Mean Cancer Fighting Machine!

Well it is hard to believe that I am already completed my second round in my new cancer trial. Time does fly by. The first round really knocked me down for a few days but so far the second round doesn't seem to have as much punch as the first. I seem to have bounced back quicker this time. I am so thankful because I was out of commission for quite a few days the last time with extreme fatigue and soreness.

This week, I was late arriving for my treatment due to an accident on the 404, which created a huge back up of traffic for what seemed like kilometres. I could feel my stress levels going up as I have never missed or been late for an appointment so far. I was worried that I might have to wait for another opening later in the day and this was a concern as it was already going to be a seven hour day as it was, or even worse, it could have been cancelled and need to be rescheduled.  Luckily it did not delay the start of my treatment and I was able to start up fairly quickly after my arrival. 

As I sat waiting to be paged to my chemo suite, I scanned the room (as I always do) and noticed a man across from me wearing a t-shirt that caught my eye. It had the following statement on it: Lean, Mean Cancer Fighting Machine. This really struck me. What a great statement! What an empowering statement. It was true. Each of us here waiting for our buzzers to go off to let us know we were ready to start our treatment were fighters. (Yes, when I say buzzer, I mean like a little buzzer you get when you are waiting for a table at "The Keg").  We are all mean, lean cancer fighting machines! Well to be honest, I'm not that lean, and I'm really not that mean, but definitely a cancer fighting machine! I knew right then and there that I needed one of those t-shirts!  I quickly searched it up on Amazon, and wouldn't you know it, my t-shirt has been ordered and should ship in a few days. I will wear it with pride.

Once my buzzer went off and I entered the "purple" chemo section of the hospital and settled into my chair, wouldn't you know it but the man with the Lean, Mean, Cancer Fighting Machine t-shirt was seated directly opposite of me. I just had to tell him that I liked his t-shirt. He smiled and stated that a friend had bought it for him after his cancer had come back for a second time. He was starting treatments today to try to beat cancer yet again. What a cancer fighting machine!

I overheard one of the nurses tell him that they treat over 150 people per day in the chemo suites on the fourth floor. There are 18 floors at the Princess Margaret hospital. No matter which floor I visit, it seems to be full of patients and hospital staff. From young to old, from the hardy to the extremely frail, from those that can walk independently to those that have to be transported by wheelchair, all races and diverse backgrounds are represented here. Cancer doesn't discriminate. It still surprises me to this day what an impact cancer has on so many of our lives. I did not see it or take the time to see it before I had cancer, for that I am remorseful.

After seven long hours at the hospital, I began the journey back up the 404 in stop and go traffic to return to my home, sweet, home. My family was anxiously waiting for my arrival (calling me in the car for arrival time status updates). It is amazing how as soon as you pull into your driveway, your stress levels go down and you can finally begin to relax after an intense day. A bit to eat, a cold drink, resting on my patio and filling Michelle in on the day's adventures were next on the agenda.

Going to Princess Margaret now has become a fairly routine event in my life. I go at least a few times every other week. I am getting pretty familiar with the hospital itself, the routines and procedures that will happen during treatment and I even know some of the staff by first name now. I am so thankful for the wonderful care that I am receiving there but deep down I wish that I did not have to go there and this wasn't part of my life. 

"You have been assigned this mountain to show others it can be moved." ~ Author Unknown

I am a lean, mean, cancer fighting machine and I've got my whole team in my corner!

Richard

 

33

Well the first week of my new treatment is now over. Time keeps moving forward. I am so glad that this new option is available to me at this time and we were not left waiting. 

How am I doing?:

Thankfully my first treatment on the clinical trial seems pretty uneventful overall. I spent the night at Princess Margaret at the phase 1 clinic on Monday and had tests and appointments for most of the day on Tuesday. It was a long two days for sure and while this treatment has less ongoing blood samples and monitoring and only one overnight stay this time around, the treatment itself does seem to be more intensive and a little harder on me and my system overall. 

Tired:

I am definitely more tired than usual this time around. It could be partly due to the lack of sleep during my stay at the hospital. I can't really sleep well in the hospital. I think I mentioned this before in a previous post, but their pillows suck! I have a firm, memory foam pillow at home and they have flat, thin pillows. Not a match for me that is for sure. I did get to watch hockey game seven between the Leafs and the Habs on my laptop but as we now all know, the outcome was not what I was hoping for. Will we ever make it to round two in the playoffs! 

Are naps my new normal?:

I think I went for at least four naps yesterday. Definitely not my usual self. I am normally lucky if I fit one good nap in. Oh well, I have to give myself a bit of a break as I did just start a new cancer treatment. I can't expect to be peppy and ready to go all the time. Just taking some time to enjoy my time on the backyard deck, listening to the birds and surveying the gardens and spending time with a good cup of coffee and talking to Michelle and the kids, is good enough for today.

3 is my Lucky Number:

Today Michelle and I celebrate 33 years as a married couple, but we have known each other for 35 years. Amazing really not only how fast time has gone by, but also how lucky I have been to find my soul mate.  Who knew that night 35 years ago when I asked her to dance and she said "yes", that we would build such an amazing life together.  I must say, that  based on my prognosis, I did not expect to be here to celebrate this milestone this year, that is for sure. We are so glad that we can celebrate together. We had plans for a beautiful dinner on the deck tonight, but we are just going to push that out to next week, and hopefully I'll feel a little more like myself.  Ice cream, now that still goes down ok.  For our wedding dinner, we had strawberry ice cream parfaits for dessert - we are going to indulge in that tonight - a strawberry shake for me and the sundae for Michelle (and I am sure she will find some way to include chocolate sauce, LOL).  

Three has always been a lucky number for me and this year is a double three for us, so come on numbers, bring me a little luck. 

Here's hoping for as many more years as possible (with many more ice creams and with a strawberry on top!)

Richard

Summer Breeze

This week's blog post is written by My Michelle.

It’s funny how here in Ontario, we seem to quickly go from winter right into summer - not that I am complaining - as this winter for some reason, seemed just a little too long.  Richard and I love to garden and see the perennials start to shoot up as the days get a little warmer, the sun a little brighter, and we spend more time out of doors.  No matter how full the garden was last year, we always like to head out to the nursery and end up coming home with a trunkful of new plants to go in just that spot, that is missing a little something.  We always try and switch it up every year with a slightly different colour scheme on our patio - this year it’s white and green in the front yard, and tropical in the back with lots of ferns.  We are trying a magnolia bush and jasmine plant in our front planter - smells divine - we’ll see how it all goes.

May is kind of a bittersweet month for us.  It was in May that we lost my father to a battle with lung cancer. It was in May that Richard’s mom unexpectedly passed away - both were gone too soon.  It was also in the month of May that my mom had her stroke. This month we also lost a colleague from our tennis club that has been very upsetting for us both - we often saw her on our walks around Newmarket and stopped to chat with her, in this case we spoke with her just the day before she experienced a brain aneurysm and passed away shortly thereafter.  It was ironic at that time, that she was asking Richard how he was doing and wishing us both the best, not knowing what was to come her way, the very next day. Life can be so unexpected and yes, unfair and frankly we are starting to think we should hop from April right into June and skip that month, which hasn’t been the best in recent years.  

This month (May) Richard was discontinued from a clinical trial due to progression of his disease and as he shared last week, we are going through the workup for another one.  We just keep hoping that something will work, give us more time together, and importantly that Richard will continue to feel good.  It is tiring for him and we just can’t seem to catch a break. 

All that being said - Richard and I are more the “glass half full” kind of people.  We look for, and try to find the optimism in most things.  We are not letting cancer hold us back - we’ve planned a cottage vacation, we are planning a getaway for our anniversary (lock down permitting of course), we are planning for some small reno projects at the house and continuing with our basement clean up!

But when that summer breeze beckons, and the pool is sparkling, the deck cushions and loungers are out and the perfume from the flower garden hangs heavy in the air - outside we go, coffee in hand and breathe in the day.  I’m not particularly religious or spiritual, but isn’t it kind of comforting to think that just maybe that light summer breeze that lifts your hair and rustles the leaves in the trees, is like a soft memory passing by.

“Summer breeze, makes me feel fine….”

Let’s turn May around into more positive memories and celebration of life.

Love Michelle

XO

When one door slams shut.... another door opens!

Well that didn't take long! In less than a week I have been fortunate enough to be offered another phase 1 cancer drug trial at Princess Margaret. We are shocked and amazed really. When I went down for my scheduled appointment earlier in the week, I was not expecting to hear any positive news. I had been preparing myself for my oncologist to say that they didn't have another trial to offer at this time and that they would keep a lookout for any upcoming trials and we would be on our own until then. I thought she would offer pain medication and discuss what palliative supports were available. I am not ready for these types of discussions as I look and feel quite healthy, at least on the outside anyway. I arrived at my appointment just in time and was having a bit of deja vu as this appointment was in the same waiting room that I had been in two months previously to discuss my first trial. Here we go again! I didn't have to wait long for my oncologist to enter the room and share some exciting news.  She arrived promptly in the room and after getting Michelle on the phone for the consultation, and with very little small talk, she immediately told us that there was another clinical trial option. We were stunned and shocked really. This is not what we had expected. All week long my hopes had been dwindling and here, the door was opening up again (maybe).  

Of course this will mean that I'll be entering into a few weeks of tests and procedures and likely another biopsy - but I will gladly get poked and prodded and take this on again, with the hope of a better outcome this time around. We are currently in the process of reading over the trial information and will be coming to an informed decision as to whether or not it is a good fit for me. I have found that when your options narrow considerably, your risk tolerance goes up considerably. It will take four weeks for me to flush out from the previous trial, but I am  two weeks into that already so I should be ready to go for the end of the month. This will bring forth another set of tests and round of procedures to go through to qualify and meet the requirements of the study. I am willing to go through all the hoops required in the hope that this new trial will make a difference. 

When one door slams shut, often another door opens. I have found over my lifetime that this statement holds true. Hope is something to hold onto, despite the evidence that might suggest otherwise. Last week my hopes were dwindling and I couldn't help but feel defeated. A week later there is new hope. Just having an option, gives me hope!  This helps to reinforce that there is always hope around the corner. A new day, a new beginning. Don't get me wrong, I do understand that this new trial could eventually end up having a similar result like my last trial, having no new real impact or lasting benefit for me, however we will continue to be hopeful that it will offer some benefit, even a small benefit. At the very least it is offering us new hope and is keeping us going. We shall see how this one goes.  

A new day, a new blessing, a new hope. ~ Author Unknown

Richard 

This week is National Nurses Week! I would like to give a special shout out to all the nurses out there who work tirelessly for their patients with skill, care and compassion. Thank you! I have nothing but admiration for the work you do. By the way, I love nurses so much that I married one!  Love you Michelle.

Run for Southlake- thanks to all that supported us in this four week virtual challenge. We surpassed our goal of $2000. and ended up with $3000. in donations. We are so thankful! We also achieved our goal of 40 km over the four weeks. Thanks everyone.

Home Sweet Home

The title says it all, Home Sweet Home! You really don't fully appreciated your own home and all of it's comforts until you are away from home for a period of time. Over the past several weeks I have had to spend an overnight stay in the hospital for monitoring and blood draws. This is part of the requirements for me to be a participant in the trial study.  Although the nursing staff try their best to make you feel as comfortable as possible, it is difficult to replicate the comforts of home. Hospitals are such a sterile environment and rightly so. They need to be. Hotels they are not, that is for sure.

Although we are spending all of our time at home these days with our loved ones, I must say that I really miss my family when in the hospital. It is not the same watching Jeopardy without Michelle and our Miss Lily.  It is not the same eating dinner alone, instead of together at the family table, or being able to walk out the door and spend time in the backyard. I miss knowing where everyone is at in the house, and popping in for visits throughout the day. The comforts of home are just that, comfortable. It can be rather lonely being in the hospital. 

Other than my family, there are a couple more comforts from home that I truly miss. My pillow! The bed covers! Oh how I miss my memory foam pillow and heavy bed coverings from home when I stay at the hospital. I have even secretly asked Michelle if she thought that I would be allowed to bring my own pillow from home with me for my stays. No such luck. The pillows at the hospital are almost useless. They are so flat that they barely lift your head up off the bed. Even asking for a second one doesn't really make much of a difference. I truly miss my memory foam pillow. Michelle and I have become accustomed to a certain number of  blankets with a certain weight on our bed. After 32+ years of marriage we have mastered the 'Goldi-locks" phenomenon of "this one feels just right". When we were first married, I liked light weight and she liked heavy weight blankets. Over the years, she has slowly kept adding more and more blankets on the bed and I find that now I have slowly adjusted and become accustomed and comfortable with the weight of blankets on our bed. It is now actually hard to sleep when that weight is not there, and when she is not there. At the hospital you get one thin sheet and one super thin, light blanket. Not going to do it I am afraid! 

The food! What can I say, culinary dishes they are not. Food in hospitals is notoriously bad. My experiences have proven this again. I havent really eaten any of the meals offered to me for the most part. There must be a great deal of food wastage. It not an easy task to satisfy everyone's taste buds and food needs but I do feel they could do a little better in this department. I must admit I am somewhat spoiled at home for food, we have some awesome meals and baked goods that really are delicious.  My children suggested that I Uber something to my room. I couldn't bring myself to do that, not even sure if that would be allowed. Shhhhh! Even though I wasn't support to leave the hospital, I did sneak out and get some Swiss Chalet take out (next door to the hospital) this week during my stay. 

Being in a semi-private room means that you get the luck of the draw in terms of the window bed and with your patient partner. I have gotten the window bed only once out of the three stays at the hospital.  My roommates have also been diverse. They ranged from two that have said 'hello' and not much else to another that happened to also be from Newmarket. What are the chances! Conversation ensued and we ended up removing the drape barrier between our beds so that we were able to watch the Leafs game together that night on my laptop. Even though he was a Habs fan, I still let him watch the game with me! Go! Leafs! Go!

Luckily, I have completed my three required overnight stays at the hospital, and for now my time at the hospital will be confined to day visits only for treatment. I feel pretty good, tolerating the treatments well, and have great energy.  Let's hope it stays that way for a long time to come!

Cherish your family, and your home (your pillows and blankets!). 

Home, Sweet Home everyone.

Richard

Sometimes I forget!

It's true! Sometimes I forget that I have cancer. Hard to believe right? It is strange. It might be just for a few minutes during the day or sometimes, when I am lucky, for longer periods of time. There are days, when I can almost get through the entire day without thinking about cancer or my own personal circumstances. These are special moments. They are carefree moments. They are 'normal' moments. They provide a much needed escape from reality, my reality. Often they occur when I am distracted, busy or thinking of others. I talked about finding distractions in one of my previous blogs. I must say that it is getting harder and harder to find these lasting moments of distraction, especially as I wait for next steps in my cancer journey. I am thankful that they they still provide me with some respite from my reality.

Unfortunately there are also constant reminders or prompts that pop up all the time that quickly bring me back to reality! It might be a zap or a pain in my body or a telephone call that seems to come out of the blue, to book another appointment or to share some recent results. It can even be a television commercial about cancer treatments, cancer lotteries or donating to cancer causes. It is amazing how many commercials there are about cancer when you pay attention and notice them. Let me tell you that you can't get through an episode of Wheel of Fortune, Jeopardy or Sunday Morning (our latest obsessions) without seeing a commercial about cancer, often multiple commercials, sometimes two in a row. These are shows that come over the US networks, where they can advertise directly to patients.  It is everywhere and impossible to ignore! I have noticed that even the talk shows seem to be highlighting people and families that are dealing with cancer or who have survived cancer. It is then, that my own reality comes roaring back.  Oh yeah, that's me, I'm a member of the cancer club.  It is sad and disappointing to say that prior to my own cancer diagnosis, I really didn't notice or pay much attention to cancer. Now I can't escape it.

Sometimes I forget what it was like 'before cancer'. I am now in my seventeenth month since being diagnosed with esophageal cancer. At that time, being here at seventeen months after my diagnosis was not even a possibility or part of the discussion.  That was the dream, to be an outlier! It has been a whirlwind since that fateful day back in September 2019. Sometimes it feels like a lifetime ago. I remember being so excited for the start of my retirement, excited for our planned retirement trips and exciting adventures that were upon us. Little did we know that we would have to detour, postpone and alter our plans due to an unplanned and unwelcome adventure that would take us on a medical roller coaster ride. This ride has had many ups and downs and plateaus along the way. I guess it is the ride of our life, for better or worse.

Sometimes forgetting is a good thing but I will never forget the love and support from my wife, family, friends and colleagues. You are what keeps me going, keeps me positive and keeps me hoping! 

I will always remember and be thankful,

Richard

I Want to Break Free!

Another week in lockdown. Another week with 'stay at home' orders in effect, meaning a continuation of minimal human contacts, lack of varied, rich life experiences and the continuation of our perpetual Groundhog Day, as Michelle highlighted in last week's blog post. To add to the misery we are in the middle of January with cold days, a lack of sustained sunshine and the 'winter blahs' in full effect. 

I must admit that I am going a bit stir crazy! I'm starting to get cabin fever. Basically we are spending all of our time at home, only going out for the occasional walk or going to get groceries. Who would have thought that driving to the grocery store would be the highlight of the day! Not me, that's for sure. On the positive side-- we are saving on gas! 

I love my family and the time we are able to spend together, but I also miss meeting up with and talking with my friends, colleagues face to face! I miss going out to a restaurant, to a movie, to a Leafs game or even walking the halls of our local mall.  I was never much of a mall shopper and while online shopping is great, it just doesn't have the same appeal. I'm sure we all feel the same way. I'm happy that I decided to return to work part time as a principal in elementary virtual learning. This has given me some much needed daily variety, an opportunity to meaningfully contribute and support my fellow educators during these challenging times.  I often find that when you help out others you also have the benefit of helping yourself!  This activity has helped me to successfully survive these long winter days and keeps me busy and mentally engaged. It helps to fill my day with purpose. 

I have to admit that I think that this isolation is beginning to have an impact on my personal mental health and well-being. Staying positive at times, is becoming more and more difficult.  I am thankful that I am still healthy and able to engage in life fully (from the comfort of my home anyway lol) but I am angry that this pandemic may be robbing me of the adventures that are not possible at this time. My worry is that I will begin to deteriorate prior to the re-opening up of our society and I will have lost the chance to complete some of my bucket list items with my family. I want to travel, I want to be with my other family and friends as much as possible. I want to eat out, go to the theatre and go to a cottage or resort.   My time is limited and time is slipping away. When will this end!

Unfortunately there is nothing that I/we can really do about it. It is what it is. We need to make the best if it.  I continue to use all of my strategies to remain mentally healthy, stay positive and remain hopeful. Some days are easier than others. I know that there are others out there that have bigger struggles then me. How are they coping at this time? Thank goodness I have Michelle and my children to help me through these difficult times. I am so blessed. I try to reach out to others that I know that don't necessarily have the same support systems that I have. I encourage you to reach out to those in your life that you know may not have support and may need your help. Check in on them, reach out to offer them support as best as you can. We all need to help each other out during these difficult times. 

I also want to take this time to say thank you to all of you that continue to reach out to my family and I! It means a great deal to me. 

Trying to stay positive! 

We can get through this. We can!

Richard

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

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

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

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

Standing Tall Through it All

This week's blog comes courtesy of My Michelle.

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

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

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

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

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

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

Love Michelle

  

A Blessing and a Curse

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

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

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

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

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

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

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

Richard

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