Smiles from the Heart

Todays blog is an entry by me, Michelle as this week it is my turn.

I struggle with how to start to write this and share this very personal aspect of this part of our cancer journey, an update of Richard and of our family.  To date, we have been fighting so hard to battle this disease and enter into this next phase with strength, dignity, with gratitude for all we have, and yet always still with hope.Things have become increasingly difficult as the disease progresses and Richard's health declines, especially over the last few days.  As you know he loves music, and so I often play music while we are sitting together and one of his favourite artists is Anne Murray.  As I worked through her playlist, one of the songs came on called "You Needed Me".  To be honest, I couldn't hold it together because the lyrics were as if they were written just for us and just for this moment,  reflecting upon everything Richard brings to my life and what he means to me.  

One of the very private things, is that throughout all of this, Richard wanted to make sure that I would not be burdened with so many of the details that come in life and management of our household and that everything is set and to give me strength to stand alone, when that day comes.  I have the pleasure to care for Richard with all my heart, with love, with dignity and respect for the man he is.  As the song goes -You Needed Me (but I also needed you).

In addition to music, I do read out all of your comments on facebook, messenger and email to him.  It gives him great pleasure, to hear your messages on how his thoughts and experiences resonate with you, and give you comfort in some small way.  Recently it was a dear colleague's birthday from his first year of teaching, and several  photos of the whole group of staff of that year were posted, circa 1990/1.  I enlarged the photos on my phone and we looked through all the people in the photo, and reminisced about different stories from way back then.  He really enjoyed it and remembered every face. It brought a smile to his face and also to mine.  

Although Richard isn't able to be on social media and answer your messages directly, he has assigned me as his chief "secretary" and I am happy to share any messages and stories with him.   We love to see and read the comments.  Sometimes these memories are private and not to be posted on facebook or as a blog comment.  I do encourage you to send them through as a DM or as an email - I will pick them up and make sure he hears them.

I know that sharing stories and remembering a life well lived and the impact he had on others is very comforting to him and brings a smile to his face.

Thank you for bringing a smile to my heart and to that of our family.  This is especially dear to us now, as Richard is entering into Hospice Care and we focus on maintaining his comfort at this stage of our journey.

Love Always Michelle and family XOX

Accessibility - A Real Eye Opener

 Today's blog was written by Richard and transcribed by My Michelle.

This week was a real eye opener for me and my family.  It was the first time I really had to venture out into public with a wheelchair.  We were headed to the Maroon 5 concert and I didn’t think I’d be able to make it with walking, so we brought my wheelchair as a back-up.  I was lucky we did, because in the end we did need it. Traffic that day was in a gridlock and all parking lots were full no matter where we went. We anticipated we had a long walk ahead of us - so wheelchair it was. But I have to say, that it was a real eye opener from a wheelchair accessibility. This was for many reasons such as:  there was a lack of signage or special accommodation for people with mobility issues and disabilities;  the ramps were not well marked in terms of location; there was a lack of designated parking or ability to drop off and pick up at the venue for people who needed assistance. We were counting on this in order for me to be able to attend the concert.  

Luckily we had our son Josh with us who was strong enough to manage the steep inclines of the ramps (when they did exist), as well as the twists and turns and getting over curbs.  Even lifting the wheel chair in and out of the back of our vehicle was a challenge and I’m not sure Michelle could have handled it on her own.

One thing that I hadn’t considered, was the impact of a crowd of walking people and I was in a seated wheelchair.  It was quite claustrophobic as the crowds surrounded us all around and of course you had people looking down at you, cutting in front, not leaving a gap etc, although most people were certainly polite.  Certainly from my point of view in a seated position, all I could see were backs and belts, and had to always be looking up at people.  I was also worried about ramming into the heels of people in front of me. As the crowd moved through the exits - again it was an eye opener, as for crowd control they had barricades up to move and corral the crowd into several queues instead of a mass exodus.  Well as people walking, you can squeeze or easily move, but in a wheelchair, you  are what you are  in terms of taking up space.  Michelle and Sophie walked on either side (my body guards Lol) and Josh pushed from behind and we made it through, but it was a challenge.

As things go, during the concert we needed to go to the restrooms - there was an accessibility washroom, but it was in a very bad state of cleanliness - and there was only one to choose from - but what can you do?  In a time of COVID and increased hygiene measures - don’t forget the accessibility washrooms! The people who need these accommodations need and deserve clean washrooms!

All that being said, we managed to find our way into the venue, made it on time to hear Maroon 5 and it was well worth the effort!  It was non-stop hits, a great stage show, and the accessibility seats had a great view!  So glad I went!

The next day, I was experiencing a few side effects and needed to go for an ultrasound of my leg as I had some unusual swelling just on one side.  I was able to get a same day appointment at the hospital to have this sorted but again, we needed to take the wheelchair and we encountered more issues with accessibility and at the hospital.  The trek from the parking lot to the main doors, involves a steep ramp as well as several sidewalk curbs that are not well maintained and have deep ruts - which of course the wheel chair wheels sink right into.  There is also only one curb that is a wheelchair ramp in front of the door, and a car was parked right in front and blocking it.  Can you believe it?  Despite there being space on either side of it, for a car to park.  We had to go and knock on the window and ask them to move so we could get into the hospital.  We barely made it to the appointment on time - but we did make it, once again.  The Erdmanns always persevere! On the return, we had to reverse the same path, over the same curbs and a downward steep ramp - it was all Michelle could do to hold on to me.  When we got to the car - I got in OK, but Michelle could not lift the wheelchair into the back of the car.  It was too heavy and too awkward.  Luckily someone was walking by and was willing to give a helping hand.  When we got home - it stayed in the car until Josh got home and could lift it out.

I will never forget these days - some people have to deal with accessibility issues every day of their lives.  Having experienced it ourselves, our family is sensitive to the issues and look at accessibility differently. I would ask that you too consider when you might hop in that disability parking spot - just for a sec as you run in to do a quick errand, or pull up and don't "see" the ramp, that there are people who depend on this and are major inconvenienced by it.

For me and for now, I continue on our palliative care journey, trying to live my life to the fullest I can.  I have a few good days, and lots of bad days, but through it all, I’m still me. So glad I have the option of "wheels" to get around.

Richard

Dazed, confused, moody (and running a bit late)

This blog was co written with the support of my Michelle.

The last two weeks I've been experiencing some side effects to my comfort treatments including feeling a bit dazed, confused and moody.  I do blame the drugs for this, however regardless of the reason, it has been impacting my ability to communicate.   I mix up passwords for social media, I get mixed up on the days sometimes, and well, yes I am having mood swings.

What do I mean by dazed, confused and moody?

Dazed? I feel a bit as if I am in a fog and have  trouble concentrating most of the time.  In a daze, is the best way I can describe how I feel.

Confused? I mix up my numbers and letters and get really frustrated with social media and with auto correct, it is a constant battle to get things typed out!  I forget what day it is - but I think that is somewhat normal given COVID and end of summer .  I do get frustrated with my confusion and as a result you will find I'm not on social media as often as usual.  My apologies if you got a mixed up message from me - I blame it on the autocorrect lol!  You will also notice that lately my blogs have been co written by the support of my family- it's easier for me to tell them what to write, and they type it out.

Moody?  Who can blame me for being moody, but it is hard to keep the filter on and sometimes I am lashing out a bit.  I feel it happening and I do feel it is related to the drugs.  I have heard of something called steroid rage, while I am not in a rage, I do feel that the steroids that help me in so many ways, are also causing the mood swings.  So you have to balance, or give and take, the benefit with the down side of the drug.  The benefits are it gives me an appetite, helps with my energy level and strength, but we have the mood swings.  Luckily they have a pill for that too - but it shows that often taking one medicine, leads you to take another to deal with the side effect and so on and so on.  Hopefully things will start to even out for me soon.  I am thankful I have such an understanding and forgiving family.  Love them!  

And running a bit late?  Well my apologies to you all!   I like to post these blogs on Fridays, but I was able to make it to the Maroon 5 concert on Thursday evening, and it really knocked me out of commission for Friday and I needed the time to rest.  It was a fabulous evening and I a glad I pushed myself to go.  However it also really opened my eyes and that of my family, in terms of accessibility.  We took my wheelchair, it was quite a road trip.   More on this next week!

Wishing you clear thoughts, productive days and positive moods!

Wishing all my education colleagues and those heading back to school next week, all the best!  I will be thinking of you while sipping my coffee on the deck!

Richard

And These Are a Few of My Favorite Things

This weeks blog post is a collaboration between Joshua and my Michelle, they have helped me jot down a few of my favourite things.

Being at this stage of my disease and in palliative care I've lost the ability to do a few things,  but there are many things I still enjoy. These are a few of my favourite things.

I love and appreciate a nice hot bath. Because I have a few ports and bandages and my trust worthy pain pump, while I can wrap up and do a shower and wash my hair now and again, I only get to take a bath once a week, after I get all "disconnected". So something I really look forward to is taking all of these tubes and bandages off and submerging myself in a nice hot bubble bath. This is the best feeling in the world. Just sitting there and floating around with the smell of lavender can really make me feel alot better.  I say lavender because Michelle and kids loaded me up with bubble bath on my last birthday- and I really do love it.

I also love going out to dinner and eating!  I don't know if you can tell by reading my blog, but the Erdmann's love going out to eat!   Breakfast, lunch or dinner, it really doesn't matter. We have been especially looking forward to eating breakfast on a patio. Eggs benedict, waffles, home fries or anything really! It doesn't matter as long as someone else is making it. Last weekend we drove up to Keswick on an errand and ended up eating lunch lakeside, on the edge of Georgian Bay at a lovely restaurant. It was a heavenly day, the food was good, and the company wasn't too bad either hahaha.  We had my IV and pain pump concealed in a back pack, and I was able to manage the short walk from the parking lot to the patio.  We hope to do it again soon. Breakfast is next on the list. In fact, having such great success with this outing, I've started to book a few more.  In a couple weeks, I look forward to meeting up on the patio with the Ramerwood Public School retirees.  Sorry to all of you who are heading back to the classroom!

Music, music, music - I love music and especially live music.  I'm sure you are like me and really missing this with all of the COVID restrictions we've been experiencing.  Well things are opening up a bit and I can't wait.  This week I was surprised with concert tickets to a band I have always wanted to see. Maroon 5. I haven't been to an outdoor concert in a long time. We've got a couple of seats in the accessible seating area and I'll come in my wheels, and a few of our kids will be sitting a little closer.  Even though I am in the wheelchair section, they should be really good seats. Looking forward to hear music live for once and accompanied by my family. Josh is even going to drive us down as a personal chauffeur/taxi service. Nothing can beat listening to music outdoors and  under the stars.  We have also been having a few small concerts at home, Jon has been working on the guitar for some old Beatles tunes and this has just been great.

And one more thing I just love - sweets!  Palliative care (and I think it's the steroid actually)  has definitely increased my sweet tooth to an even greater extent. I have been indulging in candies and all sorts of sweets that I love. Chocolate goes down really nicely lol.  Interestingly, right now I get lots of cravings for candies I used to eat in the past and in my childhood such as: goodies,  assorted cadbury chocolate bars (you know those little Halloween size, assorted ones?) and black licorice. Thank goodness my family and friends keep me stocked up with baked goods. Everyday I have something sweet. Why the hell not! Lets see what other candy from the past I will pick out for this weekend. In fact, this week our daughter Sophie made some Christmas cookies - I had a taste for it and who says you can't have Christmas in August!

These are a few of my favorite things right now. Having said that, I can't get the song out of my head from the Sound of Music (These are a few of my favourite things), and in fact, that movie is also one of my favourite things!

But bringing things into 2021 ---Maroon 5, let's put some other songs in our head!  Enjoy, I know we will!

"Because I need a little sweetness in my life,  Sugar, Yes please"

Richard

A Big Grey Cloud.... Here Comes the Sun!

This week's blog is transcribed by Joshua (thanks Joshua!) and Richard.

It is so nice to have your many visits to look forward to, to lift my spirits and change my attitude for the day. Instead of falling deeper into the doldrums  I am able to pull myself up and see the positivity around me.  Truly, connecting with you, helps me a great deal.  I love to talk to you about so many things, my health yes, but also the many great memories we share together in teaching, administration, and life here in Newmarket.

This week has been quite manageable for me health wise.  The routines are now setting in and we are feeling a better flow of the day. I have nursing visits twice a day, the pain pump is working well, and I seem to be tolerating the IV fluids and the steroids.  Although there are still ups and downs, being at home will always be better than being in the hospital.  My hope is that we will continue on this positive trend and I will be able to do a few more things.  Believe it or not, I am looking forward to running errands and getting out of the house for a change in scenery.  If things continue to stabilize, something I am really looking forward to is going to Kingston to visit some long time friends and family.  I know this might be a long shot, but we are talking about how we can make this happen.

In the meantime, we are taking it one day at a time and facing the obstacles as they come and hoping for many more days. 

I haven't felt much like listening to music up until now, but have recently been listening to some old Beatles tunes.  This one by the George Harrison keeps running around in my head and really seems to resonate with me:

"Here comes the sun do, do, do, do

Here comes the sun,  

And I say - it's all right" - The Beatles/George Harrison

Sometimes you just have to gather your own sunshine!

Thank you for reading and participating in my journey,

Back to you Michelle! Next week it's your turn.

Richard

Targeting Pain Relief

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

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

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

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

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

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

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

Richard & Michelle

This week, it's your turn!

This weeks blog comes courtesy of My Michelle

This week, it’s your turn to write the blog Michelle!

We are all so amazed that Richard has posted over 100 blogs and continues to share his personal cancer journey and its impact on our lives, over the past two years without missing a single week.  There may even have been a time or two, when there were two entries in a week!  Unbelievable!  Sometimes when we set ourselves a goal, it is human nature to pursue it with all “pistons firing” for the first attempts or two, but then with time, we tend to wane and ease off.  Not Richard.  He has approached the blog and communication with you, with the same grit, determination and commitment that he approaches his life, and this recent chapter – his battle with cancer.  But on occasion, he ropes me in and asks me to do a guest blog.  This week he was sure to remind me (many times I might add) that “this week, it’s your turn”.

I find this week however, that I don’t have a lot to say, feel “yes”, but say “no”.  There have been times this week when I have been overwhelmed, I have been exhausted, I have been sad, and yes, I must admit – I have been angry that this is what life has dealt us and at the prime of our lives.  The rational side of me knows that cancer does touch so many families and their loved ones, why should we spared?  

This week, I’ve also been touched by the generosity of others, your responsiveness, willingness to help, and reaching out to Richard to share a smile or two.  I know it is very difficult and hard to know what to say or do.  At times I don’t know what to do myself.  But I wanted to say that just by reaching out and letting us know you are thinking of us, is very helpful.  Keeping in touch with him is invaluable in terms of keeping his spirits up.  We are trying to get in some visits now and again over the coming days and weeks with family, friends and colleagues as Richard feels up to it which is usually every other day for about a hour.

This week, we also felt pride.  Last Friday, July 16th our son Jonathan completed his “century ride” in honour of his dad and raising money to support the “Ride to Conquer Cancer”.  He achieved 100 miles cycling in one day.  Richard, despite being just discharged from hospital, was able to make it to one of the rest stops we had arranged and show his love and support for Jon and his efforts. A cheerleading squad like no other.  Your support continued to roll in – and at the last 18 kms to go, an additional $500 in donations came in – giving Jon the impetus he needed to finish it off.  It was close to 2 am when he rolled in, finishing the ride.

This week (and everyday), I am amazed at our wonderful children.  This week and every week, our son Josh is so caring and concerned for his dad, stopping on his way home from work, and bringing home “treats” or anything he thinks might tempt Richard to eat and take in some more calories.  He is a big supporter of the Timmie’s Run for cinnamon buns with extra frosting, or a mango hurricane from Booster Juice, two things that always seem to tempt Richard (although not the most nutritious – but who cares!).  Sophie remains laser focused on her Opal and Fern business and her graduate school preparations, consulting with Richard along the way on the direction of her business and her study plans.  She is home with us 24/7 electing to “work from home” and spend the summer with us and Richard, giving and receiving the gift of time together.

This week has gone by way too fast, as they all do.  I know I said I didn’t have much to say, but I guess in the end, I really do.    Most of all, what I’d like to say this week – while I may have grumbled about it at the time – “Thank you Richard” for the opportunity to have this voice and blog, thank you for our wonderful life together,  thank you for being such an inspiration and handling all of this with dignity, grace and undaunting spirit.  

You are my hero.

All My Love,

Michelle XOX

PS.  Next week, it’s back to you Richard! It's your turn.

Home Sweet Home 2

Home Sweet Home Part 2

After what seemed like an eternity, I was finally released from the hospital on Wednesday after six grueling days with less than two hours of sleep per night. You do not fully realize the impact of all the noises in a hospital until you stay overnight. Beeps and buzzers, staff carting things through the hallways, doors slamming and the constant announcements.  While I am thankful for the wonderful care I had, on the sleep side of things - not so much.  I so desperately wanted to be home with my family, but my high fever and medical condition at the time, couldn't make that possible. 

I am so thankful to be home with my family and in the comfort of my own home. Being with family just helps you heal faster or at least feel better. Even though I am still struggling with sleep due to some ongoing pain, having my own bed, my own pillow, our air condition and ceiling fan, the darkness in our bedroom -  it really is my sanctuary. 

For now and moving forward, we will take things one day at a time.  Things have progressed, I'm off the clinical trial program, but I am still a fighter!  A lean, mean cancer fighting machine!

Ride to Conquer Cancer

Today is the day! Our son Jon has challenged himself to support cancer research and Princess Margaret Hospital, through biking 160 km. Today he begins that journey. We are so proud, and it looks like the weather is cooperating - not too hot or humid and the rain is holding off.  He has surpassed his goal three times already, reaching his first goal of $1000 dollars on his very first day registered! His current donations reached is at $2303. Thanks to all that have supported him, again much appreciated. It's not too late, you can still make a donation at the following link: 

Jon Erdmann's Page- Individual Rider

Princess Margaret Hospital is a world class research centre and working hard to find treatments and cures for cancer patients. Money well donated, I would say. 

Enjoying being home sweet home, and getting rest in my big comfy bed and still fighting,

Richard

What a Difference Two Weeks Makes!

Well thank goodness I had already prepared the 100th blog and only had a few minor changes and edits or most likely there would not have been a blog ready for last week's 100th edition. Let me explain further.

We have been planning a family vacation for some time now and last week was the week! We had booked one beautiful week at a cottage up in the Haliburton Highlands outside the town of Bancroft. We were all looking forward to it, time away from home, getting back to nature and hopefully some time to take our minds off our life circumstance and just relax and maybe get out on the lake. The weeks leading up to the vacation did not look promising as my aches and pains did not provide me with my comfort and we worried that I couldn't make the car ride and the fact that we would be two and half hours away from the larger hospitals. Michelle even asked if we should postpone or cancel but we make the decision to continue on (we could always turn back or come back home if needed), besides there was a small hospital in the town of Bancroft that we could get to. It would be all right, but I knew she was uncomfortable with the plan. We packed up the car (to the brim, I might add) and made our way. Josh and our dog Lily stayed home because he had to work and we knew Lily would add extra stress at the lake. Josh would be joining us later in the week. 

Michelle drove us all up to the cottage and we made it there in record time. I started to get chills and the shakes in the car ride up (thank goodness for Lily's blanket that we found in the back seat) , but it was a very hot day and we had the air conditioner on full tilt, especially so it would reach Jon and Sophie in the back seat.  We didn't think too much of it, because Michelle was also cold in the car, and thought perhaps it was the A/C.  When we arrived, I did what I could to help them unpack the car, but still felt chilled, so I went straight to bed. I kept saying how cold it was in the cottage, but that didn't make sense as Michelle and kids were hot, and did not find the cottage cold at all.  

I developed a high fever on the first night there, but it came down with tylenol and advil.  Michelle and the kids wanted to pack up and go home, if it wasn't for my stubbornness, I think that is what we would/should have done.  But to be honest, I downplayed it, and said we should try to stay. The fever did go down on Tuesday and we spent some lovely time during the day down by the water (although I did spend most of the day in bed too). I was feeling warm Tuesday night, my temp was just under the fever threshold of 38, but clearly something was not right and at 2 am, Michelle had the kids packing up and on standby ready to go.  She had already scoped out the nearest hospital, but again the temp came down hovering around normal, and I wanted to wait. Actually I was adamant that we wait. I did not want to ruin the family trip.  By Wednesday the fever had returned sitting at the threshold of 38 (it was heavily raining and wet), Michelle came into the room and quietly said, we can be packed up and ready to go in 5 mins - I need you home and in Newmarket. Bad things don't just go away, fevers just aren't a symptom to be ignored.  I finally agreed, and we packed up and came home. To be honest, I just wanted to crawl into my own bed.

After consulting with our medical team  we headed to the emergency department as we were getting quite concerned about what was happening. Princess Margaret Hospital was calling ahead to ensure they knew my medical history and that we were coming.  To make a long story short, after spending fourteen hours (that is not misprint, 14 hours - 13 of which were in a chair and crowded in a waiting room in the ER), I was finally admitted to the hospital.  For 1 hr of the wait, we had an exam room with a bed in it, and there was no way Michelle was going to let them kick us out of the room until I was admitted!  We were able to turn the lights down low and I was able to stretch out and have an ice pack, which helped a lot to make me more comfortable while we continued to wait.

They have done a series of tests during that fourteen hours and now that I've been in hospital as well as running a cocktail of antibiotics. The news that we were hoping not to have to hear (for quite a bit longer), were finally being spoken to us. The tumours were continuing to grow.   I would be moving on to palliative care focused on pain management rather than fighting the disease itself any further.

I am still in the hospital for a week now, trying to find the correct combination of painkillers to live as comfortable a life as possible and make sure the antibiotics are fighting the infection.  I want to be at home, and for a long as possible.

As devastating & disappointing as this news is for me and my family, we can still be proud of the battle we gave. Like so my people  before us and so many long after us, it is worthy to try and fight it, there are many medical advances, but cancer is an equally worthy opponent. 

We are now in the process of palliative care and with what this  means for me and us, as a family. In the weeks and hopefully months to come we will shift the focus of our blogs in this direction.

We hope you will join us!

Richard