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

Side Effects: 5 Senses

I must say that I have been very lucky to have experienced very few side effects during my cancer treatments. I know that many cancer patients deal with side effects that can be very debilitating. I would consider my side effects to be relatively minor in comparison. I am blessed and thankful for that. I talked about some of my side effects in a previous post Side Effects: Short Term Pain for Long Term Gain? 

I continue to have most of these side effects mentioned in that post, but some seem to have reduced in severity (or perhaps I am just getting used to them more now). My current side effects seem to be related to the five senses, specifically taste, smell and touch.

Taste

Since my ability to eat solid foods has returned (hooray!), I must admit that I have been indulging in eating all of my favourite foods (in some cases to excess). I have gained back most of my lost weight, which I consider a good thing as my weight drop was beginning to be a concern. I had dropped over 30 pounds in a short time. This is not a concern any longer! I am almost back to my original weight. I guess I need to cut back on the snacks (we call them salty crunchies) and sugary treats. My current mindset is "What the hell! Eat what you want Richard!"  I may need to rethink this mindset soon.

I am fortunate to be able to eat again after being on Ensure shakes and broths/soups for a few months, but my taste buds are really off.  As I mentioned in my earlier post, you never really realize the impact that food plays on most aspects of your life. Food is part of our culture, our identity and our social being. It is a focal point of our day. I am glad to be able to enjoy the social aspects of food again- family dinners, going to restaurants, visiting friends for dinner, etc.

One of my current side effects is that I don't really get the full, rich flavours of foods like I used to. They all seem muted and in some cases, tasteless. I am not really complaining as the variety of flavours, textures and food options has improved substantially since being able to each solid foods again. I hope to never go back to only being able to eat liquid foods, I will if I have too, but would prefer not to return to this limited diet.

Michelle has been hard at work making some of my favourite foods and baked goods. I definitely ate my share of turkey dinner, freshly baked holiday cookies and Buche de Noel over the holidays.  We have been blessed to have friends and colleagues bring me homemade soups, special chicken broth, assortments of candy & ginger to help with my dry mouth and taste bud issues. 

Smell

My sense of smell has also been heightened during treatments. I now have a smelling super power! I'm like a human bloodhound. I keep asking Michelle, "Can you smell that?" This is not always a good thing. Lately I have been smelling some 'nasty smells'. I am not really sure where they are coming from (perhaps some are coming from me internally) or why I am smelling them, but they are nasty! 

To help block or cover these smells -a Michelle innovation - we have created small smelling jars with coffee beans and lavender buds placed around the house that I will sniff to block out the bad smells. as needed. It seems to work (most times). When out and about, my heightened sense of smell can be a bother. I seem to be able to smell 'nasty' smells all around me. Not pleasant at times, but it is manageable. I am hoping that after my last chemo next week, this side effect will be reduced or go away.

Touch

I have been finding that my skin is often itchy and dry. My first thought was that this was just the winter weather that was causing this, but this is more than seasonal dry skin. I also notice that my hands and feet sometimes form small blemishes (especially between my fingers). My oncologist indicated that this can be a normal side effect of treatment. He suggested that I use medicated hand/body cream to help with this. This seems to work and the blemishes disappear in a few days. As a preventive measure, I lather up with hand cream all the time! (something new for me. I was never really a hand lotion kind of guy!)

At times, I get little tingles throughout my body. They are like sparks. They feel like little mini fireworks going off inside my body.  They happen for just a few seconds. Not really sure what they are. They worry me at times. I assume that they are little reactions/side effects from my treatments.

My legs and knees also seem to get sore easily. Not sure if this is a side effect or just old age creeping in on me!  Nonetheless I keep walking, keep active, and rest when I need to.

I have thankfully have had no nausea, no vomiting, no hair loss, no debilitating side effects during both my radiation and my chemotherapy treatments. I am thankful for this! I can live with these minor nuisances that I am currently experiencing. They are manageable and don't really effect my quality of life that much. 

Here's hoping it stays this way for a long time!

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

New Year, New Decade....

2020 is now upon us! Hard to believe that a new decade has begun. I must say that I am happy to see the year 2019 go! It was not one of my favourite years to say the least.  Although the year included my retirement in June from education after 30+ years (which was a wonderful celebration with friends and colleagues), it quickly turned into a total focus on cancer in August. Not the way I wanted to start my retirement and my new adventures. Not the end to the decade that I was imagining. We can’t always choose our journey. Sometimes our journey takes an unexpected turn and personal timelines need to be adjusted. 

With the reality of a new year, new decade upon us, I can honestly say that my long term positive outlook has waned recently.  As the new year begins, I am at times melancholy. Being told that you have Stage 4 Cancer does that to you.  I now focus more on the weeks and months rather than longer term. I plan to make the most of the time that I have, focusing on the things that matter most to me: my wife, family, friends and relationships. I will be focusing on moments rather than things.  Time to let go of the things that are beyond my control. My family's happiness and positive outlook are within our control. We choose POSITIVE! We choose HOPE! We choose HAPPINESS!

My most recent CTScan shows my disease remains stable. We take this as positive news.  I have one more round of chemo in January before we take a break and go on maintenance therapy. I never thought that I would be happy with being labelled ‘status quo’ or 'on maintenance' but at this point, status quo is looking pretty good!  Being stuck in neutral is our new normal. 

Save your Tears for Something Sad

Michelle and I are both Downton Abbey fans. We loved watching the show every Sunday night. Michelle would make a delicious dessert to have while watching the show each week. I really miss those desserts ever since the show has ended! We were excited to hear that a full length film version of the show was in the works. We went to see the film in the theatres when it came out a few months ago.

One of the scenes resonated with me while watching the movie. 

Spoiler Alert! Don't read the next paragraph if you haven't seen the movie yet or don't want one of the story lines revealed (don't say I didn't warn you!) 

Near the end of the movie we learn that Dowager Countess of Grantham is dying and only has a short time left to live. She pulls Lady Marry aside to tell her that she is terminally ill. This quote near the end of the movie touched me:

Our eternally witty Countess says... “Save your tears for something sad, because there’s nothing sad here.   I have lived a privileged and an interesting life"..."I'll be fine, until I am not".

Save your tears for something sad because there is nothing sad here. I truly believe this. I am saddened that my time with my family will be shortened but am thankful for the time that I have had and still have with them.  We have had many great family adventures and wonderful times. As Dr. Seuss said, "Don't cry because it is over, smile because it happened." I choose to smile and enjoy the memories that we have made together and the times that we have shared together. I hope to share many more this year.

I also believe that I have truly lived a privileged and interesting life. I would not change a thing (except for the cancer part of course!). I have had many great adventures with Michelle and our children and also with my friends and colleagues.  I have been, and continue to be, blessed.  

New Year- There are more adventures that await! Stay tuned.....and I'll be fine until I am not.

Richard