Friday, October 23, 2020

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 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

Friday, October 16, 2020

Happiness is medicine too Dad!

Well I said I would not do it. There was no possible way. It just wasn't the right time. How could we possibly add more responsibility and stress to our already busy family lives. With all my tests, procedures and treatments this week and possible ongoing treatment in downtown Toronto, this just wasn't a good time. I was even able to come up with many more valid reasons why this was not a good idea. We already had so much going on, how could we add more to the mix? It would be just crazy. I was so proud of myself for resisting the 'family pressure' - the constant texts and Instagram photos of adorable cocker spaniel puppies. Why was I the only one standing strong and firm. No puppy for the Erdmann family!

Well that didn't last long! All three kids and Michelle kept sending me adorable Instagram photos & videos of cute puppies. Soon I too started to share puppy photos back and forth with the family. There were so many cute and adorable puppies to share. Those puppy eyes. They can be hard to resist. Next Sophie started looking up cocker spaniel breeders and sending information on available puppies in our area. Soon she had us hooked into an appointment to see a breeder in nearby Tottenham. Just to look, only look, at two puppies that were for sale. I agreed to only look! Well we did the unthinkable, we got a new puppy!

We are so pleased to welcome Miss Lily Rose to the Erdmann home. She is absolutely adorable and her puppy eyes are melting our hearts already. It is amazing how she, in such a short period of time, has already transformed our family dynamics. She has somehow helped to lift the cloud hanging over us. Lily has given us all a reason to smile, to laugh and to spend more time together as a family. She has provided us with a wonderful positive distraction when we needed it the most. In less than a week, our sweet Miss "Lily-pad"  has provided our family with so much happiness. As Josh was quick to point out, "Dad, happiness is medicine too!" This is so true. Happiness & laughter really are a form of medicine. It changes your perspective and helps to distract you from your troubles.

For those of you with pets, especially dogs, you know that they provide truly unconditional love. Nothing puts a smile on my face faster than those cute puppy eyes staring at you and that little puppy tail wagging vigorously when she sees you. It was definitely love at first sight when we met little Miss Lily. She is just what the doctor ordered for our family. She is providing the spark of happiness and distraction our family needed. It is so wonderful to see the kids smiling, snuggling her and laughing at her antics. Interestingly, we think that Lily seems to have that sense that something is just not right with me. She has already formed a strong bond with me and snuggles and naps on my chest. This in turn calms me down.

That being said however, we will never forget our beloved family dog Darcy. He was one of a kind. There is not a day that goes by that we don't think of him or something happens that reminds us of him. He will be forever in our hearts. Darcy was my faithful companion. He was apart of our family for over fourteen years. Little Miss Lily is already melting our hearts and finding her own special place in our family and in turn, she seems to be developing a special spot for each one of us in the family as well!

Happiness can take many forms. The love of family (including pets) is one of the best ways to de-stress and distract from your troubles. When we start to get to that darker place and discouraged, seeing that little puppy face, just lifts your heart.  It really is one of the best medicines Josh! I'm so thankful that I got 'persuaded' to add Miss Lily to our family. 

Have a great weekend everyone. Hug your family! Hug your pet!  

Now if only she would poop outside and sleep in later than 4 am!  Ah, but we do love ya little Miss Lily!

Richard

Friday, October 9, 2020

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




 



Friday, October 2, 2020

Birthday Season, AKA Cake Month!

This week's blog comes courtesy of My Michelle.


October is Birthday Season at the Erdmann’s, AKA Cake Month. 😊


Between October and early November, our 3 children and myself all celebrate our birthdays.  At times it feels not a week passes by and we are blowing out candles, singing “Happy Birthday” and cutting yet another cake.  When the kids were small, things often doubled up yet again, as we had kid parties with all of their friends, and then we would have a family celebration on the day.  Over the years we’ve tried things to try and decrease the sugar rush:  combining parties, foregoing cake for at least one of us (usually I would volunteer as we were totally caked out by the time my birthday rolled around), decreasing to a few cupcakes, substituting fruit or ice cream and even going down to “just a slice” rather than the whole cake.  But no matter how you slice it 😊 it has become lovingly known as October is “Birthday Season” for the Erdmann’s!  Thank goodness Richard’s birthday is in June, it gives us a break and something to look forward to and by then, we are surely ready for cake!


We have had a few memorable cakes that stick out and have become “Erdmann family legends”.  There was the year we had all of these little Barbie dolls whose “skirts” were made of sponge cake and with each doll of a different colour of fondant icing, from soft pinks to lavender and powder blue.  There was the year we had a 3D Teddy Bear cake and full on teddy bear picnic.  Then there was the year we had a 3D pirate ship, 100% edible, even down to the “gold bullion” and treasure chest – even the sails were edible.  That year we had the party at a bowling alley and people came from all around the building, to get a look at this cake.  The kids still talk about that one, and Josh who is turning 24 this year, asked if he could have a repeat!  I remember the year we also had a “James Bond” theme the year Casino Royale came out, now that too was a cake to remember!  Sometimes I’ve made the cake, (I love to bake), and many times we let the professionals handle it.


The trouble with having birthday season, is that because each week it’s someone’s birthday, sometimes the pure fun and joy can get a little lost in the shuffle – especially when as parents we  were working full time, the kids had full agendas with school/university and after school activities/jobs, throw in work travel and commuting and well sometimes it was like “let’s just get this done!”.  We knew this at the time, and tried to change it up, but sometimes you just got sucked into that birthday planning vortex!

This year, we’ve been trying to slow things down a bit, trying to savour each special moment and memory.  This year we have decided, everyone gets cake (including me, whoopee!), and we are making each birthday a special one, highlighting the one day for the person, and making sure that we are making those special memories.  With COVID and what we fear is a 2nd wave, with Richard on treatment, we’ve been especially careful to keep our bubble small.  Birthdays this year have been just the five of us, fairly relaxed, and trying to make a few dreams come true.  

We count ourselves extremely fortunate to be celebrating these days together and we hope for many more.  We have been fortunate that Richard’s treatments and procedures seem to have been scheduled all around the birthday dates, but leaving those key dates free.  Last week Richard wrote about changes to his treatment, the need to pivot and move to Plan C, and our hopes to be considered for a clinical trial at Princess Margaret hospital.  We were all feeling discouraged and disappointed at the lack of options and next steps out there.  Now, it feels like a little bit of hope has been injected into our lives as we head into October and birthday season.  I am happy to report that those assessments for him and the clinical trial are underway!  We just need to stop that cancer in it’s tracks and slow it down,  so we can have more time, more celebrations and more cake!

I am so happy and grateful that we are celebrating yet another October and Birthday Season with Richard and our family, and I look forward to my double fudge chocolate cake, and it’s many candles.  I’ve earned every one!


I can’t wait to celebrate with you,

Love Michelle

Friday, September 25, 2020

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


Tuesday, September 15, 2020

One Year BLOGiversary!

Today marks the one year anniversary of My Personal Cancer Journey Blog. I really can't believe that it has been a year already.  To be honest, I really didn't expect it to reach the one year milestone but I am so thankful that it has and that I am still able to write and share posts and updates.

I decided to start this blog to share some of my cancer journey updates with family, friends and anyone else that was interested. It was a way to keep others informed and up to date with my journey as many were asking for updates and news. To my surprise it seems to have touched many of you in some way or another. I continue to be thankful for the comments and notes of support that have followed my blog posts. Words of encouragement, notes of support, personal comments about how a blog post has touched them in some way. These notes and comments mean so much to me and my family. It is so special when someone shares their personal link, connection or story with us about a blog post that we have shared that resonated with them. It continues to amaze me how cancer really does touch us all in some way.

My blog focus has always been on remaining positive and hopeful but also at the same time sharing the truth about this terrible disease. Despite the ongoing ups and downs that this journey presents, staying positive has been my one constant focus areas. I hope that I will be able to continue to share my journey with you for some time to come! 

Thank you all for joining me along this journey. It means the world to me to have you by my side.

Richard

Friday, September 11, 2020

Back to School Thoughts

This week is 'Back to School Week' for students, staff and families. Being an educator myself for over 30+ years, I can't help but think of my education colleagues that have been spending the past few weeks planning, organizing, hiring etc. in preparing for and in anticipation of the start of the school year. The general public doesn't really realize that the weeks leading up to the start of school are always busy and stressful for administrators, teachers and educational support staff alike. I can only imagine the heightened stress and anxiety they are feeling this year with all of the uncertainty, unknowns and possible health and safety concerns that they are facing and will have to deal with over the coming weeks and perhaps months. 

Back to school marks the end of summer and the start of fall. I can't believe how much has changed in education this past year since my retirement and cancer diagnosis. While I have been focused on my personal health struggles, the education world has been turned upside down. This school year will be like no other. Normally the school year has a familiar pattern and flow to it. It is generally predictable and most approach the start of school with excitement and anticipation. I am not sure this will be the case this year. Having responsibility for the safety and security of students can seem daunting at the best of times, but with the possibility of COVID-19 ever lurking, it has been taken to a whole new level. I salute all of you that have risen to the challenge and are working hard to minimize the health and safety concerns for all. You all rock!

Back to school for teachers/administrators is actually quite similar to that of the students. We too get our new back to school outfit and have that nervous anticipation for the first day of school. Most of us have back to school dreams (or nightmares) for a few days leading up to the first day. I know I did. Even now in retirement I am still dreaming about going back to school--when does that end?   

We always would take a back to school photo on our front step of our three kids - bright and shiny, new outfits, new shoes, new backpacks - excited to start a new year.  We still do this today, with just one left in university and looking toward an unusual year of online studies, we still took the requisite "back to school" photo.  I really need to line these all up in a photo essay and see how they have changed over all of these years.  A new project for me!

Last year we started the tradition of gathering up education retirees for a first day of school breakfast. This is my second year joining others for this special breakfast. We celebrate our freedom and wish our colleagues well as they start off a new school year. We also have a little fun by 'rubbing it in a little' that we get to linger over coffee. No "bells" for us anymore! I'm so thankful that I still have the energy to participate in these special moments with my colleagues and friends.

I do miss my job as an administrator. I miss interacting with staff and talking with students. It is amazing how young you remain when you intermix with students on a regular basis. I also miss the bus-y-ness of the school day. My days are now are filled with appointments, tests and treatments.  Working in education has been a wonderful career. I am so glad that I chose that career pathway.  Still I'm not sure, given the current circumstances, that I will miss it that much this year! It will be a wild ride this year for sure. Crazy times.

The one thing I am sure of is that senior admin, administrator and education staff will do their best to ensure a safe return to school for students and staff. By nature, staff are caring and thoughtful and will do whatever it takes to prepare for and adapt to changes needed to continue safe learning for all students. This return to school is like no other. 

Wishing all of my education colleagues all the best this school year.

To my fellow retirees, who wants to go for a (physical distance) coffee? 

Richard



Friday, September 4, 2020

Today's Forecast: Foggy with a chance of forgetfulness


Have you ever been in a fog? Most of us have at some point in our lives experienced forgetfulness or periodic moments of memory loss but when you are a person with cancer, chemo brain can be a real issue at times to deal with. It comes and goes but can leave you at times feeling disoriented and somewhat confused.

I was somewhat relieved to find that the experiences I was feeling, were acknowledged in both the Canadian and American Cancer Societies.  I found the definition according to the American Cancer Society,  described it pretty well and as the following and share it below:

What is Chemo Brain?

Sometimes people with cancer worry about, joke about, or become frustrated by what they describe as mental cloudiness or changes they might notice before, during, and after cancer treatment. This cloudiness or mental change is commonly referred to as chemo brain. Doctors and researchers may call chemo brain many things, such as cancer treatment-related cognitive impairment, cancer-related cognitive change, or post-chemotherapy cognitive impairment. The word "cognitive" refers to the way your brain works to help you communicate, think, learn, solve problems or remember.

Most define it as a decrease in mental "sharpness" and describe it as being unable to remember certain things and having trouble finishing tasks, concentrating on something, or learning new skills. Even though exact causes isn't known, it can happen at any time when you have cancer.

Some use the term 'chemo fog' to describe it instead of chemo brain. I feel that this is a better description of what it is like to have chemo brain. I would describe it as walking around in a state of fogginess. You can be unclear and unfocused. Sometimes I just kind of zone out.  As a person with cancer, these episodes of fogginess can be short ( a minute or two or for longer periods of time). Luckily they don't last too long. I find that for the most part,  I experience 'chemo fog' a day or two after chemo treatment.

Sometimes you forget the small stuff like names, places or what you are currently doing (why am I in the kitchen again)? Your brain is cloudy. Being foggy describes it well. It becomes harder to concentrate and think clearly. Luckily my chemo fog is fairly minor (at lease I think so, you would have to ask one of my family members for confirmation of that). It is generally sporadic, but when it happens is annoying and sometimes worrisome. I usually pride myself on being fairly sharp and alert for the most part.

It can be a bit embarrassing to be forgetful, especially when you temporarily forget someone's name that you should know well. I am the first to admit that I have always been bad with names but this is different. Forgetting someone's name that you know well or see often is concerning. Having chemo brain only amplifies my name recognition issues. 

Have you ever gone to the the grocery store to pick up a few items and return home with everything (including some extra items) but forget to buy the most important item or ingredient? I have. In fact it is becoming increasingly the case. I am in the grocery aisle and trying to remember what the items were again. I now put my grocery list into my phone so that I can refer to it if needed. Come to think of it, LOL, Michelle has been with me for some of these short grocery trips too. I guess it is just another example of sympathy symptoms on her part ( or it could be the lack of consistent sleep too).  

Life is foggy at times. We all can have moments of temporary forgetfulness. Sometimes forgetting is a good thing. I must say that I truly enjoy the moments when I forget that I have cancer! As a family we continue to have a clear focus on what is important, namely our family, creating memories and making the most of each day that we are blessed to have together. There is no fogginess there!

Stay focused everyone.  Keep moving forward through the fog!

Richard


Friday, August 28, 2020

Green Thumb Distraction

One of the ways that we have been keeping ourselves busy and distracting ourselves from our current 'situation' is through gardening. Michelle and I have always loved to garden. We have spent many years collecting, purchasing and dividing our perennials to create gardens around the house. We have been fortunate to have participated in a few perennial swaps over the years too, so for the most part we have not had to purchase many of our plants in our gardens. This is great news as we have alot of gardens throughout our property. Perennials are definitely the way to go. We both take great pride in making sure our backyard gardens look good at all times. This can  be somewhat time consuming but we have never regretted our time spent planting, weeding, watering or admiring the results of a day's work.

We love our trips to the local nurseries to check out the latest plants available. Each spring we make our annual trek to a variety of local nurseries to check out the beautiful blooms and backyard oasis products. We could spend a day and a fortune in them. Luckily we have good self control (for the most part) and usually leave with only the items we were coming in for in the first place (but not always)!

Gardening is a great distraction from life. You focus all of your attention on nurturing the soil, arranging the plants, caring for them and watching them grow and change throughout the year. This takes you away from your everyday worries. It becomes a daily task to keep on top of it all. It is great to see that when you select a good variety of flowers and plants to place in your garden, you will have a variety of blooms throughout the seasons. That is the goal, having a forever blooming garden. 


This year our vegetable garden has never been better. Last summer I built Michelle a three tiered container garden and she has filled it to the brim!  With themes for each section of course 
- salsa garden, herb garden, and a variety of different lettuces patch.  We were lucky enough to get our veggie plants early (as it seems that many people decided to take up the 'garden hobby' this year during our time spent social distancing). Our middle son Josh also got into the action, starting some of our plants from seed and contributing jalapeno peppers, romaine lettuce and basil.  I must say that there is nothing better than picking your own fresh tomatoes, peppers, onions or lettuce straight from your garden and making a wonderful meal with them, sort of like our own mini farm to table! Talk about fresh from the garden. Our oldest son Jon, thinks our vegetable garden should be bigger and we should be more sustainable, but our little "victory garden" is all we can handle at this time!

We have come to peace with sharing our veggie garden with a variety of little critters that help themselves to the lettuce and cherry tomatoes on occasion. Can you believe this! As I sit here in my lounge chair by the pool writing this blog post, a squirrel has just ran by me with a large green tomato in his mouth. I kid you not! If only they could help weed once in awhile!


Gardening takes patience and effort. The constant watering and weeding are endless. I swear that some of the weeds grow back before we have even finished the loop around the garden. In the hot, hazy days of summer, it seems that the weeds are the only plants that are flourishing. At one point this summer our grass was almost completely brown with small green patches (of weeds) growing sporadically throughout.  The darn things!  I must say that there are few things more satisfying when gardening then surveying your work when the weeding is done!

As a family project this summer, we have decided to create some stepping stones for our garden pathway. When the kids were small, given I was off in the summers, I would come up with a summer art project to help spark their creativity and help to keep them busy for a few days. When they were younger, we made mosaic tile art. This year, Sophie suggested that we return to this form of art and create mosaic tile stepping stones for the garden. Surprisingly, the boys were also game!  We have all the supplies ready to go. Our hope is to get them done over the next two weeks and before Sophie goes back to university this fall. They will make a great addition to our garden and will be a lasting memory for us all.

Whatever you are going through in your own life, might I suggest that you consider gardening as a therapeutic, natural way to deal with your stresses and anxieties. Trust me, you will not regret it. And if you don't have a green thumb, start small. Plant some hardy perennials like hostas in your outdoor garden (trust me, you can't kill hostas)! It has helped us to deal with our daily emotions, has given us a beautiful backyard view to admire each day, just a great place to start the day.

Happy gardening, we'll keep going with the never ending challenge of the weeds and the tug-of-war for the tomatoes with the squirrels!

Richard

 

Friday, August 21, 2020

Standing Tall Through it All

This week's blog comes courtesy of My Michelle.

We have thankfully approached that one year marker of Richard's diagnosis of stage IV esophageal cancer. I say thankfully, because the odds were against us and all evidence was pointing unbelievably, to a different outcome.  I often get asked "I don't know how you do it?".  Well the truth is, we really don't have much of a choice.  To give Richard the best possible chance, and the best quality of life, we have a chemo treatment plan, we have a follow up and testing plan, we have the excellent care of a health care team who are determined to help us get through it all.  Where we do have choice, is how we think, how we feel, how we treat one another, keeping connected with family and friends, and choosing to "stand tall through it all".

Standing tall, is not a new concept for our family.  It has been a value we have tried to instil in our children - encouraging them to stand up for what they believe in, make their decisions and then stand behind them, always be proud of who they are and to hold their head high.  

In a literal sense, it was one of the things that first drew me to Richard.  Richard always has stood tall, with a great sense of posture, always standing up for what and for those he believes in, always proud of who he is and our family. Richard has stood tall during his career in education, with his peers, his students and their families.

Richard has also approached his cancer journey, standing tall.  As his wife, it is one of the most difficult things to watch him go for treatments, supporting him, but not able to make it go away.  It has been worse with COVID 19 restrictions, where I can't even go into the treatments with him or sit by him in the chemo suite to keep him company.  I drive him to and from every treatment, make sure he is as comfortable as possible, that our bedding is changed and ready for his nap when he gets home (nothing is better than fresh sheets and blankets!), and that our home "sparkles and shines" and is as germ free as possible. He always walks into the hospital with his head high, his backpack confidently on one shoulder, and with purpose in his step.   I try to be strong, be his advocate and his comfort when he needs it.  I don't always stand tall, but I try.  I am a migraine sufferer and have found that I've had a few more than normal over this past year.  On one particular day when it was particularly bad, our kids said to me "Mom, you can't get sick.  If you go down, we all go down."  Certainly, more than ever I feel the need to stand tall and be strong, our family depends upon it.

I know we (and I) don't always have to be strong, that it's okay to give in and have a good cry, to reach out to others for a helping hand, and in fact it is healthy and necessary to do so!  Asking for help, and accepting help, helps us all "Stand Tall" and also gives a chance to others to share the load, and we can maybe "Stand Tall" together.

Proud to Stand Tall through it all and together, with you,

Love Michelle




  

Friday, August 14, 2020

Tired!

The title says it all. I am tired. I am tired in so many ways. I am tired of this disease and the limitations that it is creating for me and my family. I am tired of the side effects that are slowly interfering with my life. I am tired of waiting for what is next. I am just plain tired - but I am not giving up.
I am definitely tired of this disease. It has and continues to take away so much from me and my family. We continue to live in a constant state of limbo, and cloud of stress. We can't really plan our future with any great detail or long term timelines. It is hard to live your life or move forward (with hopes and dreams) when you live bound by a four week cycle, and this has been compounded by COVID 19 and restrictions. With treatment needed weekly, you can't venture off too far from home.  With treatment needed weekly, it also takes a few days before I feel a little like doing anything.  With treatment in a four week cycle, it is also hard to plan too far into the future, when you don't know whether or not your decreasing health and well-being will get in the way.  At the moment we live in "Carpe Diem". We need to really seize each day as it comes.  We need to re-energize, and do things, but I am just tired.

I am also getting tired of my side effects from taking my medications. I really shouldn't complain because compared to most, I think that I have few major side effects, but they are beginning to wear me down. But maybe that's just a reflection of how I feel today, as I write this blog.  One new side effect I am experiencing this time around, is visible is hair loss. I am starting to lose my hair. I am not really a vain person but I have always kind of thought my hair wasn't too bad! Losing it is definitely disappointing and is really the first visual sign of my disease. It is coming out very slowly (which is good), but there is a steady stream of hair loss. With my new haircut, it is not really that noticeable (at least I think so) but I am definitely shedding! My scalp is itchy too and I am constantly touching my hair according to my family, which isn't helping the hair situation at all.

Another side effect is my fatigue. My new chemotherapy meds have definitely made me more tired and less energetic. I am taking more frequent naps during the day. I used to love taking an afternoon nap on the weekend but now my naps seem annoying and far too frequent. This fatigue also seems to be taking away some of my enthusiasm. I am at times less optimistic and hopeful. Hopefully this is just a short term issue. Maybe the tiredness is wearing me down and making me feel blue, but I am just tired. 

On the positive side, because I do believe there is a positive side in everything, in just a few short weeks I will reach the one year anniversary of having being told I have stage IV, esophageal cancer. Although this doesn't seem like something to celebrate, this is really an amazing feat. We are happy and thankful that I will most likely be able to reach this milestone (considering the fact that my doctor only give me three months to a year, if we were lucky). I am beating the average. I am an outlier! I can still enjoy most of what life can offer. This is what we had hoped for. This is a good thing!

I am just tired,  but I am just as determined.

Richard

Friday, August 7, 2020

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


Wednesday, July 29, 2020

A Blessing and a Curse

This week has been both a blessing and a curse for me and my family.

The rollercoaster ride that cancer can take you on is always mixed with both positive and negative news. There are ups and downs, highs and lows and sometimes you can experience both in the very same day! Small victories and minor defeats are part of life as a patient with cancer, especially a stage 4 cancer patient. As a family we try to celebrate the victories and downplay the defeats. We pray for as many small victories along the way as possible. We are thankful that we have had a few!

This week we experienced both a small blessing (at least we think it is) and a minor curse (hopefully). In a previous blog I mentioned that my medical team has been monitoring a small tumour in my brain that they were unsure of whether or not was cancerous.  Last week I had my next scheduled MRI followed by my consult with my radiation oncologist . I am pleased to report that they feel that this tumour is not cancerous. They will continue to monitor it but its a small victory! We take it when we can get it!

On the concerning side, my hiccups have returned and are becoming more frequent during eating. It is becoming difficult to eat tough meats like steak or well done meats. At the moment, I seem to be able to tolerate other meats but need to cut them into smaller pieces and eat them slowly. My years in education (both as a teacher and administrator) have trained me to eat fast (and usually on the go!). I have had to slowly retrain myself to slow down while eating. Still a work in progress according to my family. 

In my blog post Food, Glorious Food! I talk about how I had to change to a liquid only diet. Let me tell you that this is something that I hope I don't have to return to. A liquid only diet is not something that I would wish on anyone. Don't get me wrong, I will struggle through it if I have to.

When I start to hiccup at the dinner table or have difficulty eating, you can see the look of concern on the faces of my family members. This is probably due to the fact that it reminds us all of how my cancer journey began and what it has taken away from our lives already. My hope is that this is only a small set back. Only time will tell what is in store for me regarding food. In the meantime, we will consider this a minor curse and hope for the best. I will continue to eat all my favourite food (minus the well done steak) until the point where this may not be possible.

I encourage you to savour the flavours of your favourite foods (don't take them for granted) and enjoy the social interactions that eating together with others (family & friends) provides. Celebrate your blessings, no matter how small, and don't forget to enjoy your steak (LOL).

Richard