Dazed, confused, moody (and running a bit late)

This blog was co written with the support of my Michelle.

The last two weeks I've been experiencing some side effects to my comfort treatments including feeling a bit dazed, confused and moody.  I do blame the drugs for this, however regardless of the reason, it has been impacting my ability to communicate.   I mix up passwords for social media, I get mixed up on the days sometimes, and well, yes I am having mood swings.

What do I mean by dazed, confused and moody?

Dazed? I feel a bit as if I am in a fog and have  trouble concentrating most of the time.  In a daze, is the best way I can describe how I feel.

Confused? I mix up my numbers and letters and get really frustrated with social media and with auto correct, it is a constant battle to get things typed out!  I forget what day it is - but I think that is somewhat normal given COVID and end of summer .  I do get frustrated with my confusion and as a result you will find I'm not on social media as often as usual.  My apologies if you got a mixed up message from me - I blame it on the autocorrect lol!  You will also notice that lately my blogs have been co written by the support of my family- it's easier for me to tell them what to write, and they type it out.

Moody?  Who can blame me for being moody, but it is hard to keep the filter on and sometimes I am lashing out a bit.  I feel it happening and I do feel it is related to the drugs.  I have heard of something called steroid rage, while I am not in a rage, I do feel that the steroids that help me in so many ways, are also causing the mood swings.  So you have to balance, or give and take, the benefit with the down side of the drug.  The benefits are it gives me an appetite, helps with my energy level and strength, but we have the mood swings.  Luckily they have a pill for that too - but it shows that often taking one medicine, leads you to take another to deal with the side effect and so on and so on.  Hopefully things will start to even out for me soon.  I am thankful I have such an understanding and forgiving family.  Love them!  

And running a bit late?  Well my apologies to you all!   I like to post these blogs on Fridays, but I was able to make it to the Maroon 5 concert on Thursday evening, and it really knocked me out of commission for Friday and I needed the time to rest.  It was a fabulous evening and I a glad I pushed myself to go.  However it also really opened my eyes and that of my family, in terms of accessibility.  We took my wheelchair, it was quite a road trip.   More on this next week!

Wishing you clear thoughts, productive days and positive moods!

Wishing all my education colleagues and those heading back to school next week, all the best!  I will be thinking of you while sipping my coffee on the deck!

Richard

Pain in the @#$% !

Well this second clinical trial treatment is certaining hitting me harder than the first or any other previous treatment really. Hopefully that is a sign that things are working and making a difference! I am tired, irritable and can't seem to get comfortable for any length of time. I am napping more than usual and just don't seem to have the same level of energy that I used to have. 

It has crossed my mind, that this may not be the new treatment at all that is causing this discomfort and irritability, but is an evolution and the progression of my symptoms with time. On the other hand, or glass half full perspective -  perhaps my new treatment is working and is fighting my cancer on the inside and this pain is the price to pay on the battlefield. I am hoping that it is the latter of course and all this discomfort will be worth it -- that it is making a difference and is actually shrinking my tumors. 

One of issues I am having this  this time around is back pain (and well something else we don't often talk about, constipation).  Dealing with the first issue - I don't know about you but next to ear aches, I find back pain  most frustrating as you can't really solve the issue. You can subdue it for awhile but it always seems to come back. It is not debilitating pain (at the moment at least) but a constant annoying pain that increases and decreases in intensity throughout the day (or the night for that matter). It is the type of pain that doesn't let you get very comfortable either sitting or lying down. The problem with taking pills to help with the pain, is other complications start to occur.  For example, one of the side effects of the codeine is it can cause - yes I am saying it in a blog - constipation. They sure do!  This is also a potential side effect of my immunotherapy medications. A double whammy. Yippee! Which brings us to my second symptom, a real pain in the @#$%! It seems that to try to solve one problem, you create another one!  Not really a great topic of discussion really but I promised to be honest in my blog and wanted to share some of the negative sides to having cancer, beyond the cancer itself.  I have never been the type of person to take numerous medications for my ailments, but my list of daily pills and supplementary pills is beginning to grow.

I am back to taking some meal replacement drinks to supplement my calorie intake. Despite being stubborn, reluctant and holding off for a long as I could, I had to admit defeat and return to using them to help provide me with my daily nutritional needs. This brings back memories of the beginning of my cancer journey when they were my primary source of nutrition. I hoped to not return there if possible.  

Overall I should not be complaining as I am sure that there are many other cancer patients out there that have it much worse than me in terms of side effects and pain and wish this was all the side effects that they had. I shouldn't complain really, in fact I need to come to the realization that it may get much worse as time goes on. We shall see. For right now while there is pain it seems bearable and manageable and I can live with this level of discomfort. 

100 Blogs!

Next week is a special week for My Personal Cancer Journey blog as we celebrate 100 blog posts. I can't really believe we have reached this milestone and I never expected to still be here writing this weekly blog for this long. An amazing milestone for sure.  Be sure to check out next week special blog post.

In the meantime, as the saying goes:  "no pain, no gain" right? Let's hope so. 

Richard

33

Well the first week of my new treatment is now over. Time keeps moving forward. I am so glad that this new option is available to me at this time and we were not left waiting. 

How am I doing?:

Thankfully my first treatment on the clinical trial seems pretty uneventful overall. I spent the night at Princess Margaret at the phase 1 clinic on Monday and had tests and appointments for most of the day on Tuesday. It was a long two days for sure and while this treatment has less ongoing blood samples and monitoring and only one overnight stay this time around, the treatment itself does seem to be more intensive and a little harder on me and my system overall. 

Tired:

I am definitely more tired than usual this time around. It could be partly due to the lack of sleep during my stay at the hospital. I can't really sleep well in the hospital. I think I mentioned this before in a previous post, but their pillows suck! I have a firm, memory foam pillow at home and they have flat, thin pillows. Not a match for me that is for sure. I did get to watch hockey game seven between the Leafs and the Habs on my laptop but as we now all know, the outcome was not what I was hoping for. Will we ever make it to round two in the playoffs! 

Are naps my new normal?:

I think I went for at least four naps yesterday. Definitely not my usual self. I am normally lucky if I fit one good nap in. Oh well, I have to give myself a bit of a break as I did just start a new cancer treatment. I can't expect to be peppy and ready to go all the time. Just taking some time to enjoy my time on the backyard deck, listening to the birds and surveying the gardens and spending time with a good cup of coffee and talking to Michelle and the kids, is good enough for today.

3 is my Lucky Number:

Today Michelle and I celebrate 33 years as a married couple, but we have known each other for 35 years. Amazing really not only how fast time has gone by, but also how lucky I have been to find my soul mate.  Who knew that night 35 years ago when I asked her to dance and she said "yes", that we would build such an amazing life together.  I must say, that  based on my prognosis, I did not expect to be here to celebrate this milestone this year, that is for sure. We are so glad that we can celebrate together. We had plans for a beautiful dinner on the deck tonight, but we are just going to push that out to next week, and hopefully I'll feel a little more like myself.  Ice cream, now that still goes down ok.  For our wedding dinner, we had strawberry ice cream parfaits for dessert - we are going to indulge in that tonight - a strawberry shake for me and the sundae for Michelle (and I am sure she will find some way to include chocolate sauce, LOL).  

Three has always been a lucky number for me and this year is a double three for us, so come on numbers, bring me a little luck. 

Here's hoping for as many more years as possible (with many more ice creams and with a strawberry on top!)

Richard

Negative/Positive

Negative- Well my biopsy results finally arrived this week after some delay. After double checking the tumour samples gathered from my liver biopsy, the tumours continue to grow, and my remaining treatment options are limited. More disappointing news for me and my family. Disappointment is something that we as a family are starting to get used to. We will however, as a family, always remain hopeful and optimistic-- but I must admit that our resilience level is starting to take a big hit. I keep asking myself, why is my body doing this to me? Why can I not catch a break? I must officially and publicly declare that I hate cancer!

Positive- One thing that is for sure is that I will not let cancer take away my hope, our hope. We will continue to press on despite these limited options, despite the fact that cancer is winning at the moment. I really want to be here to experience all of the life moments with my family including future weddings, grandchildren etc. There is still so much that I want to be apart of in the lives of my children. Michelle and I have so much more  that we want to do as a couple. If  mental perspective, determination and attitude play a role, I'm drawing new battle lines.  I will not give up!

A new journey/path begins....

My next journey centres around a new drug trial at the Princess Margaret Hospital. I am in the process (again) of having final tests completed to confirm my eligibility in a existing phase one trial. If confirmed, and we have our fingers crossed, treatments would begin next week. It  is unchartered waters, but what else can we do?  I'm not liking the alternative - doing nothing.  The ball is rolling and gaining momentum. Action at least is something, right?  I've never been in a clinical trial before, so at least this will also be interesting.

This new path involves overnight stays at the hospital and intense monitoring and vigilance to watch out for any possible side effects that may occur due to the treatment.  We shall see how this all plays out. My hope is that I will once again, have minimal side effects, as was the case for my past three treatment options and that this new treatment will slow or stop my cancer in its tracks. 

Isn't there a saying something about when one window closes, another one opens?  Well here's hoping that with this negative news, we are balanced off with some positive opportunity and the trial "opens a window" for us.

So we move on to our Plan "E", and as I see it, there's many more letters where that one came from and we'll just keep cycling onward!

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

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

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