A Room with a View: Looking out my Hospital Window

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

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

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

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

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

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

Enjoy the view wherever you are, I sure am!

Richard

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

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

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

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

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

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

Richard

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

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

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

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

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

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

Richard

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

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

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

 

I get knocked down.... but I get up again!

The weeks and months seem to be both flying by and never ending at the same time right now. It was hard to believe that my three month time frame for check up testing was fast approaching again. My oncologist ordered another CT scan to check on the progress of my second regime of chemotherapy treatments. Previously, in my blog posts SCANxiety and SCANxiety2  I  talked about the worry and anxiety that surrounds these tests for both the cancer patient and their families. These tests can bring hope or despair.  What will my latest test results be? 

Unfortunately it resulted in mixed results.  My cancer seems to be very stubborn and uncooperative!  It is still progressing despite the current treatment being given to suppress or eliminate my tumours. It is time again to pivot and cycle to the next stage, to control the spread of this disease. Plan C here we come!

At this time I have been referred to the Princess Margaret Hospital in Toronto and the potential to participate in a clinical trial with a new drug targeting my form of cancer.  We are hopeful that it will be something that I will be a suitable candidate for and able to join as soon as possible. My oncologist seems to think that I am a good candidate for this study and is advocating for me to join with the team at the hospital.

We definitely have mixed emotions at this time. On the one hand we are very disappointed and heartbroken (honestly) that my current treatments are not working or have stopped working. Although the side effects were increasing with this treatment, it was still manageable and attending Southlake for these treatments was really stress free for our family due to its close proximity to our home.  On the other hand, we are happy that there is another possible option out there to cycle through to help control my cancer.  Princess Margaret is a world renowned hospital for treating cancer and we would be fortunate to have this level of expertise and care supporting my treatments.  Fingers crossed that it all works out. Stay tuned. We will give you an update when available. 

You must know by now, that I am just as stubborn and uncooperative as my cancer seems to be. I will not give up! I will not stop until every option is exhausted and we'll keep on pivoting and cycling on. 

Take that cancer!

Richard

Don't poke the bear!

Sorry, this week's blog title may be a little bit misleading. Don't get me wrong, I am definitely not fond of getting needles jabbed into me, in fact I have spent a good portion of my life trying to avoid  them all together. I would dread my visit for the blood draws at the medical clinic after my annual physical to get my blood tested. "Make a fist" & "small poke" are two phrases that I still prefer not to hear. Like I was saying, the title is misleading because I don't turn into a bear when the nurse or technician is trying to get the needle in my vein, in fact I'm actually a very compliant patient (much to my surprise at times). My new reality is having at least two 'jabs' a week. It is now a part of my 'normal' everyday life. 

When you have cancer you have lots of needles poked into you! Some to draw blood, others to get an I.V. line going. During my last round of chemo treatments I had a PICC line installed so the number of 'jabs' was significantly less. However the downside of having a PICC line is already well documented in previous blog posts. So jab away I say! I guess I am starting to get used to it now but I must say that I still look away when they say "small poke". 

At times, getting the needle into a vein can be difficult. Sometimes they have a hard time getting a vein to cooperate. Nothing worse than having to be jabbed more than once to get it in.  I did not realize that veins could move. Let me tell you, they can. Sometimes they can be very stubborn. My record is four attempts before success. Sometimes they have to bring in reinforcements, the nurse on the floor that for what ever reason, always seems to be able to get it on the first time.  Where were they four times ago! Anyways -luckily most times it only takes one try!

I understand the importance of taking blood samples prior to my weekly treatment. The results of the blood tests are used to  determine whether or not I can go ahead with treatment the next day or week and determine if changes are needed to dosage of the chemotherapy drugs prior to having my treatment. I guess you can say that 'jabs' mean I can continue have treatment, so poke away and I'll try not to be a bear!

I want to pay tribute and say special thanks to those that get 'jabbed' voluntarily to give blood.  You amaze me!

Have a great weekend.

Richard

Together Is My Favourite Place To Be

This week's blog is courtesy of My Michelle

I am sitting and writing this little note with my laptop on my knee, outside, my feet  up on an ottoman and looking out over our backyard.  What a view!  Our gardens have really come along this year, and with most of them being perennials, we are just getting ready for the summer time show and next round of blooms now that the peonies are fading.  Richard is lounging on the sofa beside me, finally taking time to relax and rest a bit - admiring all of his hard work.  He is my chief gardener, flower bed digger upper,  and all around pool maintenance guy!  It's a hard thing to get him to slow down and rest.  He is always up, busy, finding something to do, or fix, or organize.  But you see, this week we have entered into the second round of chemo, and this is hitting him a little harder than the last series.  A few more side effects, a bit more fatigue, and well the acknowledgement really of the need to slow down, just a bit.  I must admit it's hitting me harder too emotionally.  This week I find too, that the kids  are a little more sombre, a little more considerate and checking in on their dad.

We've been planning a few day trips to visit some of our favourite local spots, with the next one on our list to be the beautiful Niagara on the Lake.  We had a lovely day planned for tomorrow and are just discussing should we go or not.  Our conversation is going something like "Well, it is a bit of a drive, we are kind of tired, what will it really accomplish".  We need to be careful as he is immunocompromised and of course be in consideration with the ever present risks of COVID-19.  But at the end of the day, we are hoping that a change of scenery, maybe a stop at a special little hat store (I want to buy him a hat!), pick up a bottle of wine or two and just getting away, will give our spirits a little lift.  Sometimes you just have to put one foot in front of the other, venture out and go for it!    

We certainly had plans for more grand adventures, more travel, more experiences in far a way places.  While at times we are disappointed that things are not quite working out the way we planned,  I have to say,  all of that really doesn't matter, not really, because together, well that's my favourite place to be.

Love 

Michelle

World Cancer Day- February 4th

Today is World Cancer Day.

I will continue to raise awareness and

encourage the prevention, detection and treatment of cancer.

I will continue to share my personal cancer journey in hopes of spreading positive energy to others fighting their battle and to support those around them.

I will fight to beat my cancer! #WorldCancer Day

#IAmAndIWill beat cancer!

Richard