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

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 

Let the countdown begin!

Each passing day gets us one step closer to the holidays. I don't know about you, but I am really looking forward to spending some quality time with my family. Although we are currently spending each day together at home doing virtual learning and virtual working, we surprisingly don't really have that much time to actually sit with each other and enjoy each other's company. Michelle and I have our morning coffees together, then head off to our home offices to begin working. She goes to her office and I set up my office in the kitchen lol! All our children are busy with virtual classes, work etc. too. We do get a few hours together at the end of each day but really not that much time after making dinner and cleaning up. I don't know about you, but we get very sleepy at around 8 p.m. these days! It could be the early sunsets or that winter is now officially arrived, but we are going to bed earlier and earlier these days.

I am happy to announce that we are almost done with the Christmas decorating, our trees are up and our Christmas gift shopping list is almost complete. This weekend is Christmas cookie baking time. Can't wait to dig into the wide selection of delicious cookies that Michelle always makes for us and our family. I am so surprised that the kids notice all the traditions and special routines we have at Christmas. This year we tried to scale back the 'two Christmas tree' tradition. The kids were having none of it! Once again the Erdmann's have two real trees up and decorated.  Oh well, maybe next year.  

                     

I feel so fortunate to be able to celebrate the holidays once again with my family. It really wasn't certain that I would be here to celebrate the holidays again this year based on the my oncologists projections. I am glad I am still here beating the odds! Even though we can't visit our extended family this year, we will do some virtual visits online. Not the same, but we are glad that we at least have this option to connect. Family is so important.

I must say that treatment doesn't stop for the holidays! Chemotherapy continues for me even during these special times. I will be spending New Year's Eve day in the chemo suite! I guess there will be no wild partying at the Erdmann household this New Year's Eve! Raise a glass for us when you celebrate the start of 2021. Hopefully this new year will be more 'normal' for all of us.

Cheers!

Richard

Thursdays!

Today is Thursday, which means it is chemo day! Every other Thursday, I make the short trip to my local hospital to get my bi-weekly chemo infusions. This morning while savouring my first morning cup of coffee and prior to my morning appointment, Michelle asked me how I was feeling today.  I told her I felt pretty good, definitely at least an 8/10.  Michelle asked me if I ever resented having to go for chemo? Does it bother me or am I worried or dreading chemo days. My response was rather quick, and I told her that I did not resent it at all. This may not be totally honest.....

I must say that these bi-weekly treatments have really become rather routine now. It is really just a part of my life and there is not much that I can do to change that. I don't really have any other options at this time. I have come to accept it. Don't get me wrong, there are definitely better things that I could and would be doing with my time if it was an option. I must say that it is really a small price to pay to hopefully prolong my life as long as humanly possible. So far it has kept me fairly healthy and able to fully function in all of aspects of daily life. My hope is it will stay that way for a long time to come.

This round of chemo, which is my third line of treatment, takes approximately 3.5 hours to complete. I usually use this time to take out my laptop and write my weekly blog post (like I am doing today). At other times, I scroll my social media feeds or do some other work. Thankfully the hospital now has free internet for cancer patients. Distracting myself and keeping busy helps to make the time go faster. I also bring along my headphones and use them to play music during my stay. This helps to drown out the conversations, beeps, rings (that seem to be going off constantly) and discussions happening all around me. I must say that there really isn't much privacy in a chemo suite. There are six chairs per chemo pod and they are relatively close in proximity and only separated by curtains, which are not even closed most of the time.  

I do notice that on 'chemo days' my family and I seem a little more apprehensive and somewhat melancholy. We all seem a little more subdued on chemo days. I guess this is because these days are a bi-weekly reminder that I have cancer and a reminder of the way it has changed all of our lives forever. I have even noticed our little Lily giving me a little more love and attention on chemo days.  How do they know that something is not just right?  

If Wednesdays are known as  'hump day' then Thursdays are known as  'chemo day' in the Erdmann household. I guess even though our family doesn't really look forward to chemo days all that much, another Thursday chemo day means more time together as a family and time to enjoy what life has to offer us all - Looking forward to many more Thursdays!

So reflecting back on that conversation this morning, today I do feel pretty good, I'm taking the opportunity to have chemo treatments as a good thing, having hope and grateful for so many things that I do have, and choosing not to be resentful and choosing to stay positive!

Richard

Holiday Traditions

This week's blog comes courtesy of My Michelle.

One of the big traditions in our house, like many of yours I am sure, is the setting up of the Christmas lights outdoors and on the house.  Our house is quite high, being a two story, so it has been very rare that we get up to the second floor or light the peaks.  I remember one year Richard and I thought we could do it - well we did, but let me tell you it was a lot like that Chevy Chase scene with a leaning ladder, a knot full of lights, and a few tempers might have flared as in the movie "Christmas Vacation"!  

This year the kids wanted to go all out and "deck the halls" so off we went to Canadian Tire and loaded up with a new colour scheme, new lights and the requisite extension cords.  Our son Josh was adamant he could get up the ladder to reach that second floor peak over the garage and the living room.  We had our hands full keeping Richard off the ladder.  There he was with his chemo "bottle buddy" infusing under his jacket, and right in there with the cords, lights and votes of confidence.  No way he was being left out of it!  I, of course was panicked that someone would fall, but gamely took my turn as one of the "spotters" on the ladder.  I have to say the guys did a fabulous job and the the lights were so beautiful under the snowy night sky this week.  There were no falls, just a sliver or two, so a good experience overall. Looking up at those peaks though, I'm thinking maybe those lights might end up staying up for a season or two!

I know that the kids will want me to start to get the other holiday decorations up this weekend.  It is always such a fun time to reminisce as we dig out all the old decorations, some we've had for years, some the kids made, some that were special gifts and many we have collected as we have travelled on various vacations around the world.  We  still have the original "Our First Christmas Together" ornament, as well as the ones that were given to us for "Baby's First Christmas".  So many memories of so many wonderful Christmases past.

Another tradition that our family is eagerly awaiting is the holiday baking.  Richard's appetite is hit and miss at times these days and I'm always looking to find "that thing" he loves and would enjoy.  He has put in his request for some of his favourites and I'll have to get going on all of this soon!  

I have to admit, I am not really in the Christmas spirit this year.  I am going through the motions:  I watch the movies, I help with the lights, I do the decorating, I plan for the baking.  This is a year unlike any other for so many of us.  Our traditions will be a little different, we may not be able to be under the same roof with all of our family and friends. We'll all just have to dig deep, no matter what our circumstances, and find a way to find the joy and enjoy the moments we have.

One thing I know for sure, is that this old house, sure will be looking good!

Wishing you joy,

Love Michelle

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

Our Life is like a Roller Coaster!

This week's blog comes courtesy of My Michelle. 

As we navigate through this crazy journey we are on, there are no better words to describe our life right now, other than to say "life is like a roller coaster".  We  seem to circle around and around, with dizzying climbs and what feels like free falls, only to start to climb again. We go up and then we go down and each ride seems to get bigger, faster, more complex and scarey.

Richard has shared over the last few weeks that he has been off treatment, as we have been tested and biopsied and explored clinical trial options. I say "we", because honestly, although it is him that is the one being tested, I swear I feel almost every one.  We had been going back and forth into Toronto for various tests, not the least of which was a late night CT scan.  Who knew they would do these procedures late at night for non emergency patients?  I was driving him home after the procedure and we were heading up the DVP,  both tired and in our own thoughts when he quietly said to me "how did we get here?".  I knew he didn't mean literally here on the DVP, but rather how we had reached this moment and having to deal with this in our lives.

Unfortunately our week didn't start off well as we got "the call" that Richard screened out of the clinical trial.  While we were disappointed, we had previously talked as a family about how this was a possibility, how we were concerned with Richard being off chemo for a month and our need to have that conversation with the oncologist and to get on with the next steps.  Despite knowing it was a possibility to screen out, we teetered at the top of ride and then we definitely felt like we were in a bit of a free fall.

Within minutes our phone rang again with a call from his team at Southlake, appointments and infusion times were set with the next line of approved care being booked.  The free fall  slowed and we felt somewhat reassured that there is a next step for us, that there is a plan and there are still treatments that can be taken.  

Richard looks and feels very good, although tired, but honestly who wouldn't be!  Of course we are very worried, but he is pumped, he is determined, he is ready to get back at it this week and show that cancer who's the boss!

So here we go, back on the roller coaster, in that front car, hearing that click-click-click as we climb this next challenge on our journey, me white knuckled and holding on, Richard with his hands in the air and away we go (again)!  

That's how our life is right now, a roller coaster ride.

Just hold on!

Love

Michelle

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