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

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