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

A Room with a View: Looking out my Hospital Window

This blog post was written on Thursday, April 1st.

I am sitting here this morning, looking out my hospital room window, staring at all the office towers and city streets. They don't seem to have the usual hustle and bustle that they usually do. University Avenue or "Hospital Alley" as it is also known (due to the number of hospitals located in close proximity), is much busier than most of the other downtown streets I have passed this morning on my way to treatment. On University Avenue, a flurry of patients and healthcare workers are all making their way to their intended destinations: starting shifts, ending shifts, off to appointments and treatments. The lack of hustle and bustle in other parts of the downtown are not surprising given the fact that most people are working from home these days. The hospital and the streets near them however seem as busy as ever!  

I arrived this morning before 7 a.m. to have my blood work done and there were actually only three people waiting in line at the blood lab at that time of morning. This early morning appointment meant that I was in and out quite quickly! Now what to do? I still have to wait until at least nine o'clock before the transition of overnight patients leaving for the day and new patients arriving get to take their place. Luckily there is a Timmies on the main floor so coffee number two here I come! I am still very happy that they were able to arrange for an early morning, same day, blood lab appointment, which although it makes for a very long day, it frees me up from making another trip down to the hospital on the day before. Less travel, less parking, less reminders!

Due to COVID restrictions and protocols there are really no places to go downtown. Once you enter the hospital, and after your COVID screening, you aren't really supposed to leave the hospital again until you are done for the day. As time went on, the flow and pace of people arriving at the hospital started to increase, soon the 18th floor waiting room couches are full. I will be spending the next eight hours or so on the 18th floor, the cancer trial floor with lots of time to stare out my window. 

A room with a view:  what a view out my window! Being on the 18th floor gives you a great view of downtown TO. I am so lucky to have the window view this week. In the past, I have had the second bed closest the the hallway and spent many hours of the day staring at a wall, sink and door. Not much motivation or stimulation with that view! Having the window view gives me the chance to stare outside and see what others are up to, what is happening in the world around me. I'm sure that most are doing something more pleasant than me. As I look down below, I can see a city school with kids playing on the pavement, people walking their dogs, people jogging and others rushing to wherever they are off to. As I sit up in my hospital bed with lots of time to kill, I am forced to slow down (not really by choice LOL) but it does give me alone time to think and ponder. This is not always a good thing. When I keep busy, I have less time to think about my current state of affairs. I try not to think and ponder too much these days. Thinking sometimes takes me down a negative path and it is not the path that I want to be on. I don't want to get myself into a personal pity party. Luckily I have my laptop, phone and wifi access to distract me. It is unfortunate that these times mean I need to be at the appointments and treatments solo.  I appreciate keeping up the text conversations with Michelle, our kids, extended family and friends.  This helps the day go a little faster, keeps me distracted, and keeps them informed, as I know its hard for them to be away as well.  Luckily the treatments allow me to be able to drive and be independent. With COVID restrictions and the distances into Toronto from our home, otherwise this would be really tough.  It also means when the treatments are done - I am "out-ta here" ASAP, (well until I get stuck on the North DVP trying to get home).  Keeping busy, having my independence, helps me to avoid going down these pity paths. 

Looking out my window provides a wonderful distraction but at the same time provides a reminder that life goes on! I plan to enjoy life as much as possible for as long as possible. 

Enjoy the view wherever you are, I sure am!

Richard

1st.... 2nd.....3rd.....

Well I had my 1st Port-a-Cath installed on Monday this week. I  have been hoping for some time now to have my PICC line removed as it is quite annoying. I also got rashes and itchiness due to a reaction to the dressing used to cover it, nothing seemed to really help it. Having a port-a-cath will also provide me with so much  more independence. With the PICC line I couldn't have a full bath and even had to have Michelle help me to cover it when showering.  It will also mean that I will be able to go swimming too! Our pool opening is set for early May so I will be ready to go by them. For those of you wondering, a port-a-cath is an implanted device which allows for easy access to the veins:  for taking blood samples, giving intravenous fluids and medications. Although I wish that I didn't need either, I am happy that this option was made available to me. This procedure provided short term pain for long term gain!

This week also means my 2nd biopsy in as many months. You might recall that I recently had a biopsy done. Newer samples are now needed for the study that I am on. Although a fairly non invasive procedure, it still means going under sedation and can have some complications. 

For the record, I have been in three different Toronto hospitals all in one week! Toronto Western on Monday, Princess Margaret on Thursday and Toronto General on Friday. Amazing really. We are so fortunate and lucky to have a world class medical system right here in Ontario. That is why I am supporting both Southlake Hospital through Richard's Roadrunners Virtual Challenge and have supported Princess Margaret Hospital through the purchase of a few of their Home lottery tickets. Who knows, I may be the lucky winner of both excellent care and treatment as well as a win a new home, car or cottage!

Well believe it or not this week already marks my 3rd week of treatment in the new trial. So far so good!  I had to spend another overnight stay in the hospital this week and will hopefully only need to do that one more time. I am pleased to say that I seem to be tolerating the treatment quite well with no immediate side effects to report. Another CT scan is now booked for the end of April. This is already starting to create some SCANxiety.

1st...2nd...3rd, sometimes it feels like it's three steps forward, and two steps back, but I hope through this journey, that I will at least be a step ahead of where I used to be. 

Richard

And so it begins again.......

Well that was fast! After waiting for what seemed like an eternity, I got accepted and have now started on a cancer clinical trial this past week. This new trial has produced many emotions that range from both ends of the spectrum:  hopefulness and trepidation. I have a lot of questions such as: "What have I agreed to?" "Will this be safe?" "Will this have a positive, negative or no impact in slowing down the growth of my cancer tumours?" With limited options comes more risky choices and decisions to make. "Will it be worth the risk?".  As Michelle had mentioned in last week's post, we enter into this with hope.

I must say that I have never visited a hospital so often and in such a short period of time in my entire life!  Last week I achieved a new personal record, five days in a row. To be honest,  I must admit that I have spent the better part of my life trying to avoid hospitals as much as possible. Hospitals have always kind of scared me. This is probably due to the fact that except for the birth of my three children, going or rushing to the hospital has usually meant that someone in my family was hurt or was dealing with a significant medical issue. Hospitals to me, signified concern, worry and fear. That really hasn't changed much for me now that I am a frequent "flyer" in hospitals, but I can now add hope, gratefulness and a sense of awe to this list. I am so very thankful and fortunate that this opportunity has presented itself to me. I am also so grateful for the hospital staff, who have been very compassionate and caring. I am in awe of the wonderful facilities, equipment and level of care that have been offered to me thus far. Simply amazing!

I have said this before but I must say it again, I really had no idea or realization of the vast numbers of people that are dealing with cancer. I am constantly shocked at the numbers.  I can literally see with my own eyes the impact that cancer has on so many others, not just myself. One quick example to share that highlights what I mean.  There is a large, beautiful waiting area  centrally located for patients to wait for their turn to draw blood. The startling part for me is the fact that this waiting area is so full and busy that they need to use the 'deli counter' number system to keep things running smoothly. You check in at the reception desk and wait to see your number come up on the big screen and then proceed to one of over a dozen blood technicians working simultaneously. Yes you read that right, a steady flow of patients getting blood work done from 7 a.m. until around 4 p.m. Surprising and scary at the same time! When you have cancer you sometimes feel alone, that this is only happening to you. This is obviously not the case. So many are impacted by cancer. And that's just the patients, with COVID 19 restrictions, family are unable to come into the hospital, so cancer is impacting so many more.

My new line of treatment takes an hour or so to administer but the monitoring process afterwards lasts a full twenty-four hour period and is preceded and followed up with numerous blood draws and checking of vitals to monitor my condition, hence my many visits to the blood labs and to the hospital. At the moment, I don't seem to have any severe side effects, just a few small things that thus far, all seem manageable. I hope it stays that way.  Is it working? Only time will tell, which will mean more tests and biopsies and the good old CT Scan.  All familiar testing ground for me now!

If you risk nothing, then you risk everything. ~ Geena Davis

Richard

In my Shoes

This week's blog comes courtesy of My Michelle. Enjoy!

Every once in a while, Richard asks me to contribute to his weekly blog.  I'm always honoured that he asks me, but equally a little reticent.  I am by nature, a private person, and very protective of our family, but I know that those of you who follow his blog either know him personally and care about him,  are struggling with your own troubles or travelling your own cancer journey and find his words and perspective inspiring.  As you know, while Richard has been doing well,  his cancer has continued to progress and we have made the decision to move into a clinical trial.  A decision that was not made lightly, or easily, but made with hope.

Why is hope so important? Other than the obvious of wishing for a different outcome, I think that hope is important because it encourages that little self narrative that helps make our current situation a little more bearable.  We have to believe and keep doing something.  It's just how Richard and I are "wired".  I also think it's a self protection mechanism as well, because the alternative is to despair, and there is no sense wasting time there!  That's also how Richard and I are "wired", we definitely like to get things done, not waste time and definitely do not like a pity party.

But despite what you "think" and "do" and "hope", sometimes your worries will manifest anyway.  I have trouble sleeping, I can't help it, I can't fix it, it has just become my new way of managing.  I do feel a strong responsibility to help smooth the way to help ensure that Richard has everything he needs to be as comfortable as possible, help find those distractions that are so important to help him keep coping, to find time to ease the fears and concerns of our children at this time when they are also trying to launch and find their way.  I am a nurse and somewhat knowledgable in navigating the healthcare system and able to have the key conversations with his caregivers and I take on this responsibility.  Like caregivers who find themselves in this kind of situation, I do feel the pressure, but  I also wouldn't have it any other way.  He's my Richard, and I bear the responsibility with love.

We were walking a great deal before the snow, ice and winter slowed us down, and we look forward to getting outside more, to get walking. I know that these things all help to tire one out (in a good way), help with getting a good sleep and help with a more positive mood. It seems like it has been a long, cold winter and we are very looking forward to spring, to some warmer weather and sunshine, time together in our gardens and kicking back by the pool.

I started off this blog with the title "In my Shoes" with the intent to share just a few things from the caregiver perspective and dealing with this cancer journey.  I think the title should really be "In Our Shoes" because we are not in this alone - not Richard, not me, Jon, Josh or Sophie - there's a whole extended family and community here with us, and we are grateful for the support.

Wishing you a good night!

Love Michelle

Negative/Positive

Negative- Well my biopsy results finally arrived this week after some delay. After double checking the tumour samples gathered from my liver biopsy, the tumours continue to grow, and my remaining treatment options are limited. More disappointing news for me and my family. Disappointment is something that we as a family are starting to get used to. We will however, as a family, always remain hopeful and optimistic-- but I must admit that our resilience level is starting to take a big hit. I keep asking myself, why is my body doing this to me? Why can I not catch a break? I must officially and publicly declare that I hate cancer!

Positive- One thing that is for sure is that I will not let cancer take away my hope, our hope. We will continue to press on despite these limited options, despite the fact that cancer is winning at the moment. I really want to be here to experience all of the life moments with my family including future weddings, grandchildren etc. There is still so much that I want to be apart of in the lives of my children. Michelle and I have so much more  that we want to do as a couple. If  mental perspective, determination and attitude play a role, I'm drawing new battle lines.  I will not give up!

A new journey/path begins....

My next journey centres around a new drug trial at the Princess Margaret Hospital. I am in the process (again) of having final tests completed to confirm my eligibility in a existing phase one trial. If confirmed, and we have our fingers crossed, treatments would begin next week. It  is unchartered waters, but what else can we do?  I'm not liking the alternative - doing nothing.  The ball is rolling and gaining momentum. Action at least is something, right?  I've never been in a clinical trial before, so at least this will also be interesting.

This new path involves overnight stays at the hospital and intense monitoring and vigilance to watch out for any possible side effects that may occur due to the treatment.  We shall see how this all plays out. My hope is that I will once again, have minimal side effects, as was the case for my past three treatment options and that this new treatment will slow or stop my cancer in its tracks. 

Isn't there a saying something about when one window closes, another one opens?  Well here's hoping that with this negative news, we are balanced off with some positive opportunity and the trial "opens a window" for us.

So we move on to our Plan "E", and as I see it, there's many more letters where that one came from and we'll just keep cycling onward!

Richard

Supporting My Local Hospital & Cancer Centre

No update to share as of yet on my biopsy results. My oncologist called me today to let me know that the lab is reanalyzing the sample. The results must be really close and they want to be totally sure of the results as this will determine which next path I will take in my cancer treatment. 

Supporting My Local Hospital- Southlake Regional Health Centre

I am so fortunate to have a hospital in my local community that has a regional cancer centre attached. This has meant the world to me, as I can attend appointments, tests and treatments with limited worry and relative ease. No long commutes, hefty parking fees or hours on the road going to and from treatments. This also means that my family is always close by. A blessing for sure. I am so fortunate so I want to ensure that others who may need our hospital, can get the same support that I am currently receiving, especially from the Stronach Cancer Centre with excellent, modern and up to date facilities and the wonderful, helpful caring staff.  

In my previous post, Supporting Cancer Research, I talked about the various cancer charities that I have supported over the years, not knowing that one day, I would myself be needing to rely on these resources for my own personal health. Our family had planned to participate in the Southlake 5K Run/Walk last year. Unfortunately due to COVID this event had to be cancelled. I am happy to announce that the Erdmann's have signed up again this year for the virtual version of this event. We invite you to join us!

This years event is called Run for Southlake Virtual Challenge. Michelle and I have created our own Virtual Challenge team called Richard's Roadrunners. We are always looking for people to join our team and cause. Between April 12th and May 9th our team have committed to focus on being physically active, supporting our personal wellbeing by eating well, being physically active, building our walking endurance & going the distance. We hope to record at least 40 km of walking during the four week event.

We invite you to join us!   You can find our team registration information here. We would love to have you join us virtually and set up your own goals. Lets achieve this together and raise money at the same time. Alternatively, if you can't commit to being apart of our team but would like to make a donation to the cause, you can do so here: 

Donation to Run for Southlake Virtual Challenge. Please be sure to donate under our team name Richard's Roadrunners. Our goal is to raise one thousand dollars for Southlake Regional Health Centre. We are almost halfway there already! Thanks to those that have already sponsored me, Michelle or our team. We really appreciate it. 

We will keep you updated on our progress in an upcoming blog post, once the event has begun. 

Thanks everyone and get your runners on!

Beep! Beep! Go Roadrunners!

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

B is for Biopsy

This week brought me back to Southlake Hospital in Newmarket for a liver biopsy.  Although the hospital was fairly quiet, I was still quite surprised to see fairly large numbers of people in the day surgery waiting room. The entire procedure from start to finish was about four and a half hours, although the procedure itself seemed to take less than half an hour. Surprisingly quick and painless, mind you I might have been sedated, so it could have taken a little longer than it seemed. I have to take it easy for a few days (no easy for the Energizer Bunny, but I am trying!).

This biopsy was scheduled by my oncologist to get a better understanding of what is happening with my liver.  This biopsy will hopefully provide us with some much needed new information about the tumours in my liver. Those three stubborn tumors that seem to be resisting all forms of treatment and continue to grow. How dare they! They may be stubborn, but I'm just as stubborn as they are!  Hopefully the results will show some biomarkers and results, that will open up some clinical trials options.   

In the meantime, life goes on! I'm going to try and take it easy for the next week and heal up.  This weekend brings both  Valentines Day and Family Day! Both centre around love and taking a little time to pause and recognize those we love, especially our families. I am so fortunate to have a wife and family that love me. I love them more than words can say. They are my life! I don't know what I would do without them. Michelle is my sweet valentine. She provides me with unconditional love and support. She masks her concern and worry very well, but she has had a few sleepless nights, keeping watch over me as I recover.  We are looking forward to getting some rest this weekend!  Our three kids are the best thing that ever happened to us. We are so proud of each of our children.  I hope they know it.  Family Day gives us that special reason to let them know, and to pause and show how happy I am to have them and our family. This weekend we celebrate love. We celebrate family. 

B is for biopsy, but it is also the "B" in Be my Valentine.

Wishing you a wonderful long weekend. Enjoy your family and spread some love!

Richard

Not Playing the Waiting Game!

I was going to call this week's blog, The Waiting Game, mostly because that is what our/my life seems to be right now, a never ending waiting game! Waiting for test results, waiting for next steps in my treatment and waiting for this lockdown to be lifted so life can return to some sort of 'the new normal'. Most of all we are waiting to check off more of our family bucket list items that are currently on hold. I guess we are all experiencing our own personal waiting game. This week, when I was discussing possible blog topics and titles with Michelle, like we do most weeks, she quickly pointed out that despite the waiting game that we are on, life still goes on, and despite cancer touching our lives, we've all made conscious efforts not to wait and to keep moving forward.

She reminded me that we really do have so much to celebrate and be thankful for, even during these dark times. While we feel like we are 'stuck in neutral' , life continues on for better or worse. She was quick to remind me of all the "better" moments that have been happening in our family's life over the past few weeks and months. It really helped to refocus my thoughts and reflect on some of the good milestones and positives. Sometimes we can get lost in a never ending cycle of negativity and disappointments, focused on cancer and treatments, and waiting for the next best thing, or any thing really, to happen. So with this in mind, and with a refocused attitude, I have to share that we actually have been doing more and we are not always playing a waiting game!

Over the past few weeks we have many instances to celebrate and be thankful for the blessings that have come our way. Michelle just accepted a new global role with her company.  She has worked hard for this and we are so very proud of her and I am so glad I am here to share it with her. Despite our personal family obstacles and support she gives me, she has remained strong and continues to be focused on loving us but also providing excellence in her career.  It's not easy and I know how worried she is about everything, but she keeps going.  Jonathan has completed his university degree and is exploring a variety of options that will use his skills and talents. He recently has been doing some stock footage/time lapse 4K video and posting it for sale.  Not easy to keep moving forward, when much of the film industry has slowed, and just when you are trying to launch.  Josh continues to move ahead in his job and at the same time he is exploring further post university studies. Not easy to keep working and advancing during a pandemic and we are so proud of him.  Sophie, our youngest, is a candidate to graduate with distinction from Queens, and has just completed her application to a Masters program. Her little sticker shop "Opal and Fern" just celebrated its first anniversary and has generated over two thousand item sales in its first year. An amazing achievement. Not easy to keep excelling at university and launching a business, when I know how worried she is about me, when she should be just enjoying her university years, but she keeps on reaching and we are so proud.  Even I have kept moving forward.  On a personal note, I supported a colleague in writing an article for the Canadian Association of Principals journal focused on leadership during the pandemic, was named as an author and it was published this month. This is one more  bucket item that I can cross off the list!  

Other positives include the health of my family remains good (except for me of course). We are generally happy and are managing/coping pretty well during this pandemic. Despite the constraints, we seem to be navigating it pretty well (even with five adults under one roof) at least from my point of view. Our little Lily continues to be the bright light for all of us and we just adore her. What a wonderful addition to our family.  

Michelle is right, we aren't  stuck in neutral, life goes on, we go on, and we need to appreciate these moments, the effort and celebrate all along the way!

No more waiting!

Richard

Back to the Drawing Board......

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

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

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

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

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

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

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

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

Plan D, here I come!

Richard

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

GroundHog Day!

This week's blog comes courtesy of My Michelle!

We really are seeing some unprecedented times, with our province having recently put Ontarians under emergency order to stay home to help reduce the spread of COVID and hopefully reduce the strain on our health care system.  For us in the Erdmann household, it feels pretty much like business as usual, as we have been dealing with the lock down conditions of recent weeks being part of the GTA, and also the lifestyle choices we have made,  being careful with Richard and cognizant of his immunocompromised status.  

We have been very fortunate, and while the news coverage  reports of delays in treatments and care for many patients, Richard remains being seen and receiving treatment right on schedule.  We had only one scary experience where he was on a "waitlist" for the infusion chair at his regularly scheduled treatment day, but in the end a "chair" opened up, and in he went.  It was a frightening few days, and we felt very powerless and at the mercy of the system. 

 As you know, with the current restrictions at Southlake Regional Health Centre, patients cannot bring a support person in with them for their treatments, and I have to leave Richard at the "Kiss and Ride" by the door.  Richard has shared that the cancer clinic is always "full" and many people are quite frail and ill looking.  It makes me very sad to think how cancer is touching so many people's lives, their loved ones and re-writing how their lives were to be.  I try to stay in the moment and be thankful for what we have,  that Richard is doing well and not think of what might have been.   I truly am thankful that we have had care and treatments, experienced no delays, and have had more time together - I do not take this for granted.

I think that cancer treatment in the time of COVID is a blessing and a curse - it makes it easier for us to cocoon at home and reduce his exposure to potential illness, but it also adds an additional layer of concern and a health threat that was not there before.  It also limits how we can spend our precious time.  While I wouldn't change a thing and spending time together is what really matters, it does get a little tiresome not being able to do just a few more things that we always really enjoyed such as going out for breakfast together, enjoying a beautiful meal at a restaurant, or just poking around in little shops and doing a little shopping.  Simple little things, that we truly miss.

We are beginning to feel a little bit like that movie "GroundHog Day", reliving the same day over and over.  Embarrassingly, the highlight of the days are definitely going out for a walk with Lily and stopping at the mailbox, and "oh happy day" when there is a delivery at the door to break up the boredom!

While right now, every day seems kind of the same and we are in a bit of  'on repeat' loop, I bet that one day we will all look back and find that one of these boring and ordinary days, were the best days of all!

So if I have to be in a "GroundHog Day", I am so glad to be able to spend it with you! ......"But honey, what day is it again today?"

Love Michelle