Let the countdown begin!

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

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

                     

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

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

Cheers!

Richard

Thursdays!

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

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

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

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

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

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

Richard

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

Fireworks - It's not what you think!

 This week's blog post was written on Tuesday, June 30th.

I am writing this blog post sitting in my chemo chair in the cancer centre on this glorious Tuesday morning. This week I was fortunate to have a chemo chair by the window overlooking the beautiful newly planted hospital gardens, with a blue sky and the sun shining so brightly over the town of Newmarket. If I wasn't sitting here in this chair right now, I would most certainly be sitting by our pool drinking my second cup of coffee, talking with Michelle and watching the birds in our backyard take their morning bath in our birdbath. Being here, stuck in this chair, gives me lots of time to think, contemplate and write.  My treatment today will last 2.5 hours. I am currently in my second round of treatment in this new series. My new chemotherapy plan calls for weekly chemo infusions in a three week cycle. Every fourth week I have a week off. Yay!

I found out that I don't need a PICC line installed on my arm this time. This means no bottle buddy ! I sure don't miss him. (For those of you that don't know who bottle buddy is, it was the nickname given to my portable chemo bottle that I had to wear for a week at a time during my last series of chemotherapy). Having no bottle buddy means that I can still go swimming, take showers without assistance and wear short sleeved t-shirts. Wonderful news for sure, especially over these hot summer days. For the moment, I am free to enjoy all that summer offers.

Internal Fireworks

My side effects this time seem to be a little harsher. The days following my treatment have been tiresome. I'm not as energetic (hyper) as I usually am. I seem more irritable and 'grumpy'. At times I have what can best be described as 'mini fireworks' happening inside my body. These little 'sparks' or 'zaps' seem to be most intensified in my legs & arms but sometimes they occur throughout my body. They are not really painful but do cause some discomfort and are surprising at times. It's like I am having my own mini Canada Day fireworks display going on inside my body, lol.  Luckily, so far, I still don't have any nausea or vomiting. This is great news to me.  I also have infrequent numbness in my arms and hands, but overall I do feel fortunate to still have mostly minor side effects at this time. We shall see how it goes as we continue these treatments. Fingers crossed it stays this way.

As I sit here in my chair, I sometimes sneak a little peak at the other cancer patients in their chairs. It is really hard not to do this as you are literally sitting directly across from another patient and there also five others in close proximity. Why are these chairs always full? It always amazes me the number of people that are here. I arrived at 8:30 a.m. this morning as one of the first patients to be seen and by 9:15 all of the chairs were full. There is definitely not a lot of privacy here. Sometimes you see other cancer patients sneaking a peek back at you too. Your eyes make contact for a brief moment. What are they thinking? Probably the same think that I am thinking, why are you here? As I look around the room at some of the other patients receiving their treatment, many of them look very frail, quite pale and seem exhausted from their treatments. This makes me feel like an imposter. I on the other hand have a nice summer tan happening and am generally quite chipper during treatment. If you saw me, you could never tell that I have cancer. This reminds me how important it is to remember that we can't always see the burdens that others are carrying with them. It is so important to treat others with kindness because you don't know what others are going through.

As the time passes in the chair and I sit here listening to music and continue to write this blog post, I hope and pray that these treatments are all worth it. Will they really make a difference? I am openly agreeing to have toxins administered into my body to fend/fight off my cancer. Will they help to stop the spread of my disease? Only time will tell. Right now this is my best and only defence in this important fight. 

It's time to keep calm and carry on! I only have a few more minutes left in treatment until I can enjoy that cup of coffee with Michelle in the backyard! This morning, with you, having coffee.

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

SCAN-xiety 2.0- Unwelcome News

Previously, in my blogpost entitled SCAN-xiety, I talked about the rollercoaster ride cancer patients and their families go through regarding tests and scans. In that post I described the intense emotions that each test cycle creates for me personally and for my family. It all starts with the worry and wonder leading up to the test. Followed by the anxiousness on the day of the test and finally the concern and the dread of the possible results or outcomes from the test. I must say that waiting for the test results is definitely the most challenging part. Hence the term, SCAN-xiety. 

Last week, I had my regularly scheduled CT scan (which I have booked approximately every three months to keep us and my medical team up to date on the progress of my treatment). It was, like previous scans, fairly routine except perhaps for the new hospital protocols that are in place due to the ongoing COVID-19 issues.  The CT scan itself takes about 15 minutes. The machine pushes you into a cylinder tube that is rotating. It tells you to hold your breath for five seconds (it seems longer than that).  The platform then moves you slowly out of the tube (while you are holding your breath). This happens a few times. Fairly painless overall, except for a few slightly claustrophobic panic moments in the CT scan tube perhaps.  And then you wait! Waiting is painful, not literally but emotionally. 

Usually you wait until your next scheduled appointment with your oncologist to get the scan results however a few days after my scan I received a call from the hospital to indicate that my oncologist wanted to book a phone consult with me.  This was a week earlier than anticipated to discuss the results, which is not usually a good sign. Our family's anxiety levels immediately starting rising after getting off the phone. 

Unfortunately my early phone call was not good news. My most recent CT scan results had shown that my first line of treatment, which had been successful up until this point, was no longer controlling the spread or stopping the growth of my disease. My oncologist indicated that it was time to move onto the second line of treatment options. 

With our medical team, we are now in the process of determining our next steps, which will definitely include a new round of chemotherapy, a new cocktail of chemo drugs to fight this disease.

However disappointing and discouraging this news is for me and my family, we fight on! It is very hard to reconcile this news, with outward appearances and how I feel overall.  My energy level is good, my appetite is good, my outlook is hopeful and I continue to do most all of the things I normally would be doing.  We stay positive and we hope and pray for better news to come. 

We will not give up!  

"Being challenged in life is inevitable, being defeated is optional" ~ Roger Crawford

Richard

My "Bottle Buddy"

Written on Tuesday, January 21st, 2020.

As I sit here at the cancer centre, for my 6th and final chemo treatment (at least for now), I can’t help but think about my cancer journey. I wrote about my chemo treatments in a previous post: My Chemo 101.  My six, three week cycles of chemo, will be coming to an end on Sunday. Funny how it seems to have gone by so quickly yet so slowly at the same time. After today’s chemo infusions, the five day countdown clock begins as they put on my portable chemo aka known as my "bottle buddy"! After that, I am free for the foreseeable future! 

Immediately after my chemo infusions at the cancer centre, they attach my portable chemo bottle to my PICC line to take home. This bottle contains a  drug which is delivered slowly over the next five day period. It is the third drug in my chemo "cocktail", each having a specific action to kill any rapidly growing cells in my body.

My "bottle buddy" follows me around 24/7 for the next 5 days. It joins me for my morning shower or bath. It travels with me wherever I go throughout the week. It has attended a Maple Leafs game, a Toronto Rock game and numerous restaurants (thank goodness) over the past few months lol! I wonder where we will venture in our final week together? I try to hide it under a sweater, hoodie or jacket. It does create a noticeable bulge and can easily become an unwanted conversation starter (though I would rather not talk about it).  

My "bottle buddy" is a constant and visible reminder of my cancer. It is difficult to ignore even if you try. It feels like I am carrying a mini water canteen with me. It moves around a lot, wiggles and flips/flops side to side as I move.  The plastic tubes get tangled in the holding pouch or long sleeve shirts I wear to disguise it. I must admit that it can get annoying. I try to forget that I am wearing it, with limited success. So as the saying goes, "short term pain for long term gain", right?

It even comes with me to bed each night. My "bottle buddy" has even driven a wedge in my marriage! It comes between Michelle and I in bed! It has its own designated pillow (to keep the bottle vertical during the night). I often wake up during the night to find my bottle has fallen horizontally or the attached tube is across my face. I correct it and try to get back to sleep. This happens a few times a night. Broken sleep reminds me of our baby days. Sometimes I forget that I'm wearing it when taking a late night bathroom run, it quickly reminds me, flopping around. Luckily it has not detached. That would not be good. 

I have mixed emotions about my bottle buddy! I know that it is there to help me. It provides me with my much needed chemo medication and protection. I understand that.  This is an important part of my treatment plan. At my pre chemo appointment yesterday, my oncologist indicated that my cancer has stabilized, but not gone. We choose to take this as a positive sign. Our plan is to "beat the average", and overall I feel pretty good.

I need to thank the anonymous volunteer that hand knitted my portable bottle buddy holder. At the cancer centre you can find hand knitted chemo bottle holders and a variety of knitted hats for those patients that have lost their hair. This is a small but amazing gesture for cancer patients.  If you are an avid knitter,  please consider knitting and donating some of these items to your local cancer centre. I am sure that they would appreciate it. It does make a difference in the lives of cancer patients.

As this is my last chemo treatment (for now), my PICC line will be removed later this week and this will be the last I will see of my bottle buddy. 

A bitter sweet goodbye. Thanks for your efforts in my cancer fight.

Farewell bottle buddy!

Richard

Kitchen Dancing

This week I am pleased to have a blog guest, My Michelle. Enjoy!

I come from a long line of “kitchen dancers” and lovers of music.  We put on the music, and we can’t help ourselves, the dancing soon follows.  I remember watching my mom and dad sneaking in a dance or two, what must have been a welcome release when dealing with a large and boisterous family.  My sisters and I took turns learning to dance with our dad, first standing on his feet as he danced us around, progressing to the old two step and then jiving.  We sisters would also dance together, taking turns on who would lead and who would follow, throwing in a dip or two. As we grew up and boyfriends came and went, husbands joined our family and my dad passed away, the opportunities for kitchen dancing naturally waned and changed.  But then - I met this wonderful man, Richard, from a small family, who also came from a family of lovers of music and “kitchen dancers”. He fit right in, took my hand and twirled me around the kitchen and we have been dancing ever since! My mother would often comment on how she would think of Richard and I dancing in the kitchen and how it would make her smile to think of us so happy and dancing!

We’ve been having a rough go at times during Richard’s cancer journey, but through it all, we still put on the music, and rock out in the kitchen to our favourite songs.  Sometimes we just hold on to each other and sway to an emotional tune or two. While our sons are less than enthusiastic to join in and often give us the “eye roll”, they have been known to hover around and act as DJ, while Sophie is right in there, adding in her moves. We love these simple moments and I know we are raising the next generation of kitchen dancing enthusiasts!

Studies have shown that music can relax your mind, energize your body and reduce stress.  Upbeat music can make you feel more optimistic and positive about life. I know that Richard finds listening to music during his chemo treatment marathons, helps him a great deal - helps to take his mind off what is happening in the moment, to block out the beeps, buzzes and conversations at the infusion clinic. But I know that he is also listening to our favourite songs and doing his own “kitchen dancing” from the infusion chair and planning his moves for when we get back home!

You are always dancing in my heart,

Love Michelle