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.

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

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

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

New Year, New Hope!

Well 2021 is finally upon us and we have kicked 2020 "to the curb" and we all can surely say, "what a year it was!" I am thankful for the fresh start that the new year will hopefully bring us all, but remain concerned/cautious based on the news and events so far this past week--this is not promising! But selfishly, I am thankful that I am here and still have hope!

Each year I participate in the #oneword initiative on Twitter. At the beginning of each new year, Twitter users are asked to give their one word that describes their aspiration for the coming year. This year I picked the word HOPE. 

I have HOPE that we will once again be able to come together to hug, break bread and laugh together. We all really need to get back to close contact with our families and friends. 

I have HOPE that as a community, country and society we can all do better in terms of the way we are treating each other. There remains so much division, hatred and mistrust. We can and must do better. We all need to be a part of the solution. 

I have HOPE that my chemotherapy treatment will continue to work so that I can continue with life as normal as possible. My current treatment has allowed me to basically function normally with minimal side effects. I continue to be blessed. I am HOPEFUL and THANKFUL.  I have a lot of living still to do for me, for my family and much, much more time with Michelle.

Without HOPE there is despair. I can't imagine living with despair. Despite all of the hardships, trials and tribulations that my family and I have gone through this past year and a half, we remain optimistic and positive. Let's stay positive and hopeful for the future. 

Have HOPE!

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