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

Targeting Pain Relief

This week's blog is co-written by Michelle and Richard. 

It's been a longer week than normal for me.  I've spent most of the time sleeping in my bed upstairs and struggling to manage my various pains - in my back, in my neck, all over really.  Once it starts to gain hold, it's really hard to get back on top of it.  We have tried different drugs and treatments, and finally we think we have a solution in place to solve the pain issue.  One thing about pain meds is that they also make you sleepy, and also create other side effects and problems as outlined in my previous blog post, Pain in the @#$% !

This week has also saw progress in other ways - I now have a hospital bed on the main floor to make things a little easier for me, as well as a shower bench, a walker and a wheelchair (just in case I will need it).  I have a nurse coming in daily and she provides much needed care for me and support for Michelle.  She has been with me during these days of sorting out my pain and other symptoms and so it is very helpful to have this continuity of care.

In addition, my care has been streamlined.  My pain meds are now managed with a pain pump and my meds are cut down to just the essential things to give me comfort and care.  This has been very helpful as I've had a bit of nausea, so now we are by-passing that and the drugs get right where they need to be and when.  This takes a big burden off of us as we had a large number of pills and different timing to take them, so this is all much easier now.  Less running up and down the stairs for Michelle.  We also have our Dr. come to our home as well as other essential services, again making things easier and able to stay Home Sweet Home.

Though things have declined for me this week healthwise, there continues to be hope as other things get more manageable - such as my pain.  I had to cancel a number of visits this week with family and friends which was very hard for me to do.  Hopefully we can get these re booked over the coming weeks.

I'd also like to thank all of you who are dropping off goodies for our family - I've had a number of butter tart deliveries - how did you all know they are my favourite!   We really appreciate all of your efforts - life is so busy for all and that you took this time to bring us some sweetness is overwhelming.  

Sugar seems to give pain relief too!  As Mary Poppins would say " just a spoonful of sugar, helps the medicine go down" and it really does!

Richard & Michelle

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

 

Journey vs. Battle

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

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

Mission Possible?

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

Using Every Tool Available in my Arsenal

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

Collateral Damage

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

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

Army of Support

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

Fighting the Good Fight

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

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

"We will never surrender!" ~ Winston Churchill

Thanks for supporting me along the way.  

Richard

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.

For the Birds!

Well this is the final week before the holiday season officially begins for the Erdmann family. Michelle, Jon and Joshua will be off work for the holidays and Sophia has finished the last of her exams and essays for the term. I am so looking forward to the holidays. Christmas is one of my favourite times of the year. I love the decorations, the lights, the food and the cookies (can't wait to eat all of those cookies)! I am counting my lucky stars that for now, the chemo seems to be working and I'm able to eat most everything.  Bring on that turkey dinner!  For us, Christmas  is a great time to slow down, reconnect and do things that we normally don't have time to get to do. 

Last year our son Joshua bought Michelle and I a wonderful Christmas gift that we make use of each day during the winter. He gave us a bird feeder, a North American bird calendar and bird themed hats. It was a very thoughtful gift. Both Michelle and I love to bird watch, especially from our comfortable chairs in our kitchen. We strategically placed the feeder so that we have a great view of the birds. (We might have had to move it a time or two, to get just the right spot!). We love to see the large majestic Blue Jays and vibrant red Cardinals, along with a variety of other birds that visit our feeder. This summer our feeder had a visit from a rare blue bird, they are gradually coming back to Southern Ontario - it was the most beautiful and vibrant shade of blue.  Nature is amazing!  Occasionally we get a visit from a local squirrel or two who try to get their fill of the seeds too. Although not a welcomed visitor (based on the amount of seeds they eat), a squirrel has to eat too, right?

We love identifying new birds that come to the feeder. It is surprising how many different birds rely on the feeders over the winter. Chickadees are the most common visitors but we do seem to have a pair of Blue Jay and Cardinals that are frequent visitors. We enjoy that they come in pairs to the feeder, a male and female couple. I am still trying to get a good photo of them both. Easier said than done! They seem to visit when my camera is not easily accessible or become easily spooked when I try to take a photo of them. Interestingly some of the other birds are more than willing to remain at the feeder even if I am approaching the feeder to get a good shot.

We say that we are doing it for the birds, keeping them fed over the long, cold winter months, but actually we are doing it for us, as a family. Feeding and watching the birds is another wonderful distraction from our daily worries and troubles. They give us small moments of joy and wonder each day and a reminder that despite what we are going through, life must, and does, go on. Sometimes our feeder will be emptied in just two days. It is our pleasure to refill it to see who will visit next.  

This will be the final blog post for 2020. We can all agree that we are happy to see this year come to an end. We are looking forward to all the promise of better times in the new year. Let's hope they come true for us all.  Over the next two weeks I will be focusing on family and relaxation. My Personal Cancer Journey blog will return in the first week of January. My treatments are going well so far, I am enjoying life, we are staying the course!

Wishing you and your families a wonderful, restful holiday season. Take advantage of this time to reconnect and make some new family memories. Don't forget to feed the birds (and squirrels too).

Look forward to seeing you in 2021!

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

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

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

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

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