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

Bottle Buddy is Back!

The Return of Bottle Buddy.

Well that was fast! We are back at it. As updated in last week's blog, I screened out of the clinical trial and am back under the care and treatment of the excellent team at Southlake.  This treatment I am now heading into, called for  PICC line to be installed since one of my new medications would  need to be administered over a 48 hour period. I was quickly booked for the procedure this week, in time for my first chemo day on Thursday. We've also had more bloodwork, a CT Scan (I think I've had 7 of these to date!), and other screening tests--- it really has been so great to be able to have this excellent follow up and and care so close to home.

Now, this new treatment regime has something old and adds something new to the attack on my cancer.  With the return of one of the previous medications,  comes the return of something I had nicknamed "my Bottle Buddy"! As you may recall, I previously talked about "My Bottle Buddy" in one of my posts earlier this year, back in January. At that time, when that treatment finished up, I was very excited to have my chemo bottle removed and in turn have my PICC line removed. At the time, my bottle buddy was really getting on my nerves. The bottle was with me 24/7 and at that time it was for five days in a row, every 3 weeks for quite a few months. It followed me everywhere I went, I mean everywhere! It even slept with Michelle and I each night, neatly tucked between us with its own pillow to keep it upright, lol. 

As I mentioned in that blog, my "bottle buddy" was a constant and visible reminder of my cancer. It was very difficult to ignore. It wasn't painful or really that uncomfortable. It did however move around a lot, wiggling and flopping from side to side as I moved.  The plastic tubes also seemed to get tangled in the holding pouch a lot. I was successful at hiding it underneath long sleeve shirts. But I have to say it was great to have it off for the summer and I was able to enjoy swimming and wearing t-shirts.  With fall here and winter coming, I guess one silver lining with having my bottle buddy back, is that I will be able to once again easily conceal it under a long sleeved shirt so no one will really be able to notice it (except maybe for the big noticeable bulge under my shirt lol). At least it will only be attached for two days this time, instead of five days in a row like last time. 

Now that we have our sweet new puppy Lily, I will also need to be extra careful that she doesn't try to bite the tube or the bottle.  We shall see how that goes! Lily loves to cuddle up on my knee and I don't want to give up that if I don't have to. So far so good,  she doesn't really seem to pay any attention to it.

How long will bottle buddy be with me this time?  Well, it will be with me for as long as the treatment is working.  Our hope is that this treatment will work for as long as possible. Time will tell!  How's it going so far? Well within the first 10 mins as the new chemo started to infuse, I really could feel it, I had a few side effects that were quickly addressed by my health care team.  I've had some nausea, but overall the meds they give you to take really help to make things more comfortable.  I am immunocompromised, so again, our concerns with COVID are elevated and we are taking extra care, as well as all the extra precautions we take to watch and monitor for any other infections.

All that goes to further say, as I welcome back my bottle buddy and the chemo treatment again, I must admit that we continue to have a love/hate relationship.   I love it when it works, hate it when it is inconvenient or if it doesn't do the job!

I hope that you enjoy your weekend everyone!  Embrace your "bottle buddy", whatever that might be!

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

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

Gone Fishin'

This week we had the good fortune to be able to get away for a few days to a cottage on Lake Musoka in Gravehurst, Ontario. It was a glorious few days up in beautiful cottage country. I had forgotten how majestic it was up in Musoka. A true Canadian paradise. This was all made possible thanks to the generosity of a work friend and her family who graciously let us stay at her family cottage. This was my week off of chemotherapy and we took advantage of the time off and freedom, to get away. This cottage trip was a wonderful reprieve from our everyday routines and weekly appointments and provided us with a glorious, picturesque location (as we have not been venturing out much these days) to rest, relax and enjoy family time together. We all seemed to enjoy the serenity, the quiet and the chance to be one with nature again. Nothing makes you slow down and count your blessing like a trip to the cottage.

One of the highlights of the trip was the fishing! When I was younger my family owned a cottage and we spent most of my summers there and I used to go fishing almost everyday. I loved to troll the shores of the lake for bass, pike and perch. It was a great lake to catch fish. They always seemed to be biting. My parents sold the cottage when I was in my early twenties. At the time, I was focused on my new life and didn't visit the cottage that often. It was becoming too much for my parents to handle, so they sold it. I have always regretted it. Once we moved to York Region my opportunity to go fishing diminished considerably. I have not really gone fishing in a boat since 2012. Thanks to my wonderful work friends, they arranged for Jon, Josh and I to have a guided fishing excursion on Lake Muskoka (the girls opted to lounge on the deck, lakeside). Our guide Mike took us on his professional fishing boat to all the great fishing spots on the lake. I even bought a new fishing rod, reel and tackle box full of new lures. I always wanted to take the boys fishing and this was my chance. We had a great morning of fishing and caught a variety of fish including walleye, bass, pike and perch. So glad they were biting that morning. Nothing better than that feeling when a fish takes your bait- fish on! As you

can see from the smiles on their faces, I think the boys had a good time! We caught enough for a great fish fry. The girls meanwhile enjoyed their time on the dock, reading and relaxing with their morning coffee- and there may have been a trip into town.

We also enjoyed a quick trip into Gravenhurst later that day to do a bit of sightseeing and shopping too. In the evening, we made a reservation on the patio at a local restaurant and had a wonderful dinner on the patio with all five of us. It just doesn't get any better than that. Although the time in Muskoka was short, we made the most of it and enjoyed every minute.

You might be asking at this point, what does this have to do with cancer. I might have asked the same thing reading this blog. The answer is absolutely nothing! Sometimes you just want to forget about cancer (even just for a few days). This wonderful trip allowed my family to forget all about cancer, our medical issues and worries for just a few days and simply enjoy our beautiful country in all its natural glory and quiet time together with each other. What more can you ask for. Words can not express how much this time away meant to me personally and

how much I enjoyed our much needed quiet time together by the lake. We are already planning our next excursion for my next week off chemo in the middle of August. Hopefully it will include more chances to go fishing (and shopping :) ) too!

Life is better at the cottage!

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

Side Effects: Short Term Pain for Long Term Gain?

Many have asked me, "How are you feeling?" My answer has for the most part been, "I feel great!" because most of the time, I do feel great. I can fully participate in most aspects of daily life without any real issues or concerns.

Others have remarked, "You look great!" when they see me in person. My guess is that I am getting the 'you look great' response, mainly due to the fact that I don't really have any of the visible side effects that you would normally associated with cancer. For example, I have no hair loss. The only real visible difference you can see in me is that I have lost a significant amount of weight over the past few month (although I have been gaining some back lately!) Ironically this weight loss actually makes me look healthier, at least from the outside appearance anyway.  (it probably is actually a health benefit to have lost more than twenty pounds over the past few months, although I did not enjoy my liquid only diet- see my Food! Glorious! Food blog entry for more a reminder).

I don't want to get to 'medical' in my blog but think it is important to explain the difference between chemotherapy, radiation and the side effects that can happen due to each of these treatments. Most cancer patients are provided with one or both of these dual treatment options. 

According to the Canadian Cancer Society:

Chemotherapy (sometimes called chemo) destroys cancer cells or slows their growth (My hope is that they kill them!) Some chemotherapy drugs are given on their own. But in most cases, several chemotherapy drugs are used together to destroy cancer cells (I am currently on a combination of three different chemotherapy drugs). *

Radiation therapy works by destroying cancer cells and damaging a cancer cell's DNA so that it stops dividing and growing. Radiation therapy can shrink a tumour or completely destroy it (Again, I prefer the second result!).  It is most effective on cells that grow and divide quickly. Cancer cells tend to divide more quickly than most normal cells. This makes them more likely to be affected by the radiation (be radiosensitive) then normal cells. *

* Taken from the Canadian Cancer Society Website

The issue with chemotherapy and radiation therapy is that while their main purpose is to kill cancer cells, they also damage healthy cells at the same time. This of course is not a good thing and is what can cause side effects to occur. 

As I have stated many times in my blog, each cancer patient's journey is unique to that individual, and this is true for side effects as well. Some experience more side effects or more visible side effects than others. It is important to state that many cancer patients experience side effects that are not necessarily visible to others but can have devastating impact on quality of life.

I have been fortunate so far in the fact that I am not experiencing many of the major side effects that are possible during chemotherapy & radiation.

To further explain the "How are you feeling" answer, below are the moderate side effects that I am currently experiencing from time to time:

Short Term Fatigue-  In the past I have often been referred to by others as 'the energizer bunny'. This nickname, I can only imagine is based on the fact that I can be a little hyper at times (no comments please!). One noticeable side effect has been that I have slowed my pace down a bit since my treatments have begun. (This may not be a bad thing after all!). The three days after my chemo are the hardest as this is when the fatigue sets in. I have resorted to short naps some afternoons to address this symptom. 

Low White Blood Cell Counts- For the past two out of three chemo treatments (so far) I have had my treatments postponed by a week due to low white blood cell counts. (Better safe them sorry I say), as low white blood cells can increase the risk of infections.

Dry Mouth- My mouth can get very dry at times. I have been using a moisturizing mouthwash and a variety of items from the 'care package' given to me by some of my work colleague friends which include real ginger bits and sugar free candies. These have helped a great deal. 

Changes in Taste & Smell- (what I refer to as "Metal Mouth) Sometimes I get a metal taste in my mouth that takes away from the normal taste of foods. Sometimes I smell strange smells as well. Luckily it doesn't seem to last too long. 

Dry/Irritated Skin- My skin can become dry and itchy. At the moment, it is hard to determine if this is an actual side effect or simply the fall/winter seasonal effects of the weather coming into play here.

Some Memory Issues- some call it "Chemo Brain". It is where you forget simple things like people's names or tasks that you were doing. (This can be embarrassing at times, but I have found it an effective excuse when I forgotten where I have placed my wallet, keys or cellphone LOL).

I have been fortunate so far that my side effects have been manageable as this is not the case for all cancer patients. Thanks to my medications, (and I take them just as the Dr. ordered to prevent the side effects). As I understand this, the nausea and vomiting are not something that you can wait out or work through as it is related to the level of chemotherapy in your system.  I am glad to have these medications to help prevent and manage the possibility of this happening and I am pleased to report that I have not had any nausea or vomiting associated with my treatments so far. This is a big relief as you may recall that it was nausea and vomiting that started this whole journey in the first place (brings back bad memories!).

I will be having follow up CT and MRI scans over the coming weeks and my hope is that these treatments and side effects will all be well worth it when the results come in!

This is my experience and understanding of possible side effects but please remember to speak to your doctors and/or healthcare team regarding your specific questions or concerns (Michelle made me put this disclaimer in)!

Richard

Blessing or Burden?

Delayed One Week

Last Monday I went to get my blood work done in preparation for my second round of chemo. Blood work is usually done one day prior to chemo to ensure that you are healthy and strong enough for the treatment. When meeting with my medical oncologist to review the blood test results last week, I was surprised to find out that my white blood cells were lower then expected and he informed me that I would need to wait an additional week before I could start my chemo treatment. This came as a surprise as I felt healthy, optimistic and my eating has improved so much over the past week. I was concerned that this was perhaps a bad sign. I have only had one round of chemo so far, was my body not able to handle the strong chemo meds. What would this mean for me?

Blessing or Burden?

My chemo plan calls for one week of chemo and then two weeks off. During the chemo week, I spend one day in the hospital to get two out of the three medication intravenously. This takes approximately 5 hours in the hospital. The third medication is given to me at the end of the session in a bottle containing a balloon of medication. I take home the bottle and wear 24/7 for five days. It contains slow release meds. I plan my life around these treatments. I usually don't feel that great for three or four days after chemo day at the hospital and then gradually start to feel better. During the second and third weeks my health (and mood) improves so we use this time to get back to our 'to do' list and our 'bucket list' items. 

Michelle and I are planners. We like to make lists and schedule things. We have a white board in our kitchen to record upcoming events and use a monthly calendar to record appointments and important  dates to remember. Yes, we are both GOLD personalities.  We find that if you set objectives, write it down, we are more likely to make it happen. As well, with the multitude of appointments, we needed to find a way to keep track of them all. We keep a binder of print outs of all our appointments as well.  Thank goodness for dry erase boards! 

The uncertainty  of my appointment schedule and treatment plan, really creates limitations on these pre-made plans. One thing that is for sure, our lives are now much more unpredictable. This can cause additional stress for those of us that like to have a plan and be organized. We have had to adjust and modify on the fly. We have to adapt and change direction as needed. On the positive side this gives us a chance to live in the moment and be more spontaneous!  But definitely out of our comfort zone.

I have come to understand that many cancer patients have had to wait additional time between chemo treatments and that this is something to ensure that our bodies have recovered enough to be able to handle the next treatment.  The goal is to build up and strengthen, so it can handle being broken down again!  It is the darn cancer cells we want to kill out, but some healthy cells are collateral damage along the way.  It is difficult to wait as I want to move forward to try to remove this disease from my body as quickly as possible. Patience is needed.

So is it a blessing or burden to have to wait another week? I would have to say it is both. On the one hand clearly I am responding to the treatment, but on the other hand could a delay also give the cancer cells a chance to regroup?  Flexibility and patience are my new best friends. These are new character traits that I am learning to add to my repertoire!  

Richard

  

In those moments....

Once you hear the words, you have cancer, you really can't think or focus on anything else. It consumes your thoughts. It consumes your day. Most of your thoughts are focused on dealing with the daily issues this disease brings forth and the uncertainty of what your future holds.

There are however, moments when you forget, even for a few minutes that you have cancer.  I cherish these moments. Sometimes they are brief, only lasting a minute or two. Other times they last for longer periods of time. These moments allow me to dream again, to focus on others, to smile and laugh! You could easily spiral down into self pity and a sense of loss of hope. These moments help to refocus your attention on the positives and on possibilities.

I have found ways to help create these moments each day.

Time with Family & Friends

Spending time with my family helps to create these moments. One positive byproduct of this diagnosis is that our family is spending more quality time together. Family walks with our dog Darcy, kitchen conversations, reminiscing about important milestones or memories and frequent FaceTime video calls with Sophie (who is currently away at university) help to shift attention to others. My family has also been burdened with this cancer diagnosis. I'm sure it is on their minds each day. Difficult to escape from it. None of us chose to have this happen but we are forced to deal with it anyway. Trying to continue with normal family routines helps. Focusing on the positive helps. Celebrating small victories helps. Spending time with those that matter the most, definitely helps.

Friends and colleagues have been supporting me in so many ways. I am grateful to have them help me find ways to create these moments. From canoeing on the marsh, to boat rides on Lake Simcoe, to friendly axe throwing competitions. Meeting for coffee, having great conversational walks, text messages; they all help to distract.

Music

Music has always been a way to escape for me. I enjoy many different genres of music from rock to country. From classical to top 40. Music releases stress for me. It allows me to escape the troubles and worries of the day. I have been bringing my headphones with me to chemo so that I can 'escape' during the hours of treatment. The power of music is clear. The change in my emotions simply by playing a certain song is powerful. It can uplift, inspire and change your mindset almost instantly. I have to admit that on occasion you could even catch me dancing around the kitchen.

Social Media

I seem to have this reputation of being obsessed with social media. I do enjoy viewing, posting and creating on social media but I don't consider myself obsessed. I use social media for many reasons: 

to share, to learn, to explore, to connect and to engage. I find it a great learning tool. It allows me to gather and share ideas, resources and learn from others around the world. I must admit that I enjoy it! When I focus on social media, I forget about my worries and it provides me moments to escape and focus on something else.  

Nature

Never underestimate the power of nature! Michelle and I try to go for walks as often as possible. Getting out in nature instantly changes my mindset. I am so grateful for the pathway system that has been created in Newmarket. We are so fortunate to be able to explore our town through a series of interconnecting walkways that are connected to nature. One of my passions is photography. Nature is often the focus on my photo shoots. Nature is beautiful.  It can calm you down. Getting out into nature always creates these moments for me. Give it a try!

Darcy

They say that dogs can sense when something is different or not right. Our dog Darcy has been by my side each day while at home. Wherever we go in the house, he is there with us. When I go for a short afternoon nap, Darcy is snuggled up next to me. He is by my feet when scrolling through my phone, he is with me when I sit outside to get some fresh air and sunshine. We are so blessed to have him as companion.

I am so thankful for these moments and thankful for the people and things that help me create these moments for me. Find your moments!

Food, Glorious Food! Update

I am pleased to report that I can once again can eat solid foods! Not all solid foods but many including: spaghetti, pasta, rice, grilled cheese etc. I even had some salty, crunchy chips during the last Leafs game! Not really a healthy choice, but boy did they taste good! 

Richard

My Chemo 101

Chemotherapy was next on the list.

Did you know that you need to attend chemo class prior to starting chemo? I did not. Back to school again for me and Michelle. We attended our pre-chemo teaching class along with a few others new to the cancer journey. It was quite informative and did provide us with a lot of the answers to our questions prior to the start of the treatment. I have listened to hundreds of powerpoint presentations in my educational career, this is not one that I ever expected to have to listen to.  

To get the process started a central catheter line  (PICC) was installed in the bicep of my arm to deliver  the chemo drugs into my system. This meant another visit to the hospital to have the line installed. It was quite quick and easy but now I have two tubes sticking out of my left arm! Not really a great fashion statement, let me tell you. Thank goodness summer is over so I can conceal them under long sleeve shirts. Not that I am embarrassed about them but they are definitely conversation starters that I would prefer not to have. I'm not really looking for that kind of conversation. A series of drugs were ordered to take before and during the treatment to help with nausea and vomiting as well.

Next was a follow up visit to my medical oncologist to ensure that we were all good to go. A blood test, a weigh in is needed the day before to ensure that I'm able to handle the next dose, and that the meds are created for the next day as they are based on my weight.  It's a bit of a struggle to maintain my weight, and things do seem to be continuing downward,  despite all of the Ensures!

The cancer centre that I attend is a fairly new facility that has great open spaces for patients. The chemotherapy floor has a series of hubs with eight chemo loungers in each hub. There is room for over 24 patients at one time. Can you imagine that! I still can't get over the number of people that are dealing with this disease. It floors me. You are able to bring along one person to sit with you during your treatment. Michelle was by my side for my first treatment. Even though I told her that I could do it myself, that six hours was too long, that she could work from home and then return at the end, she insisted on attending with me.  

My first chemo was the longest (approximately 5 hours) and I received two different types of IV meds and then I went home with a bottle of chemo that is attached to my PICC line that infuses for five additional days. 

At first I thought, I can handle this no problem.  This sounds great. Less time in the hospital, more time at home but let me tell you, having a small plastic bottle strapped to you 24/7 for five days in a row is a constant reminder of what you are going through. Trying to keep it upright, wondering if it is working, waking up in the middle of the night (wondering if the bottle remained attached) and carrying it in a crocheted sling holder (graciously made by some wonderful volunteer) throughout the day did test my patience and limit, not to mention the issues with showering. 

The hardest part was on day five when we were waiting to contact the nurse to remove the bottle once and for all for this cycle. The bottle was supposed to be fully emptied by 4 p.m. Meanwhile 5 p.m. went, 6 p.m. went and the bottle was still not empty. I'm not going to wear this thing again for another night! Finally by 8:30 p.m. the bottle was empty. We survived. Chemo Week 1 was officially over!

I am happy to report that I did not seem to have many side effects at all for this first treatment except for a loss of appetite. I did keep up with the anti nausea medication schedule exactIy as prescribed.  No need to be a hero here!

But clearly, I  need to eat and drink more to keep my weight up. 

Now a two week break and them back to the chemo cycle again!

Richard