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

You are not Alone!

This new journey that I am on is really a solo journey. It is my journey to face. My body chose to allow cancer cells to form. This is my disease to battle but I am not alone!

I am so thankful to have Michelle by my side each step of the way. It is so difficult to process information and details as well as deal with the emotions and impact of what is happening to you in the moment.  Michelle has always been my support. I am grateful to have her with me each day to help navigate my emotions. 

What would I do without my family. Although the news of my cancer diagnosis has devastated them, they stand strong in supporting me. How difficult it must be for them to cope with this. The uncertainty, the helplessness they must feel. Each dealing with the news in their own personal way. I don’t know what I would do if it was not for my family. They are the reason for continuing to fight this battle. 

Their lives have also changed forever. Our lives have been split into two: Life before cancer and life after cancer. As we maneuver through this new reality, we are constantly adjusting and adapting but at the same time trying to keep some normalcy in our daily routines and lives. Some days are harder than others. I am so fortunate to have my family supporting me along this journey.

It has also been difficult for my extended family. I know that they don’t know what to say. They also feel helpless and are at a loss of how to help. My hope is that they will focus their attention on helping Michelle and my three children manage their new reality. Helping and supporting them as they support me.

The outpouring of support from my friends, colleagues and others has also been overwhelming. Positive thoughts, messages, notes, get togethers have all help me. Laughter is so important at this time. Not much to laugh at really these days but my friends and colleagues have provided me with special moments where I can laugh even for a moment or two and forget about what I am going through.  Words can not express how it feels to know that others have you in their thoughts and prayers and are thinking of you. I count them all as important members of my army helping me to fight this battle. 

When I look around me, I see so many others silently battling this disease. Just like me, I’m sure they did not want to fight this battle. They didn’t want to deal with all of the pills, needles and equipment being hooked up to them. We are all alone but all together at the same time. We each enter our radiation room individually and sit in our individual chemo recliners getting our treatments but we all share a common focus, fighting our cancer battle. Alone but together. 

No one should have to face this journey alone. If you know someone who is, please reach out to them to offer some encouragement, positive energy or just be there to listen to them if they need it. It takes a team of supporters to win this battle. Be apart of someone’s team! My support group is strong but others my may need some reinforcements.

Richard

My Radiation 101

As I have said previously in my blog, each cancer patient's treatment plan is unique to them. My team of doctors decided that I would begin with 10 consecutive rounds of radiation followed by chemotherapy.

The introduction to the radiation plan actually began immediately following our conversation with the Medical Oncologist confirming that I had esophageal cancer. Just minutes after receiving this horrific, life altering news about my diagnosis we began a series of meetings with the treatment team which consumed the rest of the day. I guess we shouldn't have been so optimistic and parked in the two hour zone! 

We first met with the Radiation Oncologist to discuss the plan for radiation. Next we met with the drug reimbursement specialist, to confirm that we had insurance to cover all of the drug costs. This was followed up with a meeting with the dietician to check my weight and review my eating plan. Finally we were sent downstairs to have pre-radiation orientation. We watched a short video on what to expect and what to prepare for. The radiation schedule was set to begin in one week. We were very pleased with the speed at which the treatment was going to happen but that was a long, tiring and emotional day for the both Michelle and I. We had a lot to process!

I had always told myself that I would never get a tattoo. I don't like them and didn't like the thoughts of having something permanently inked on my body. No offence to those that have tattoos. To each his/her own! That all changed with my cancer diagnosis. I was told that I would need to have four small tattoos placed on my chest in order for the radiologists to properly aline the radiation rays. As this really wasn't an option, I agreed to the four tattoos. That's right, I got four tattoos in one day! Move over David Beckham and Justin Bieber, there is a new bad boy in town! Did I forget to mention that they are only the size of a pin head! They still count as four tattoos though.

Radiation at first seemed scary to me (as I was picturing the CT scan and the MRI scans that I already had) but honestly after the first day, it was actually relatively quick and painless. I was in an out in less than half an hour at each visit. 

The daily radiation routine includes, checking in at the registration desk, changing into your hospital gown, wait to be called in, enter the room, lay on the bed with your arms above you. They turn off the lights and the radiologists them align the lasers with your four tattoos, take measurements to adjust to ensure the all is in alignment. They ask you for your name and birthday at each visit (I guess to ensure that the right patient is being treated). Finally they turn back on the lights, turn on some music and then leave the room to begin the process.

There are two passes of the machine that take a 360 degree rotation around your body. The first I have been told is to ensure that all is good and that everything is in complete alignment. They take a quick scan to compare to the day before during that first pass. Any minor adjustments are made remotely and then you wait for the second pass of the machine. 

On a few occasions that second pass seemed to take a lot longer than over the previous days. Your mind starts to wonder. What is wrong? Is the machine not working? Is the alignment not right ( I don't want radiation in other areas of my body).  Finally the machine boots up and the second pass begins. After I asked, was everything ok? Why was the second pass delayed? Happy to hear that they were actually in discussion with a student radiologist, explaining the process and steps to them. Being an educator myself, I had no problem with this on the job training support.

As I had done with the MRI and CT scans, I found a focal point to ease my mind during the process. A smear on the ceiling, a word or number, whatever it took to take my mind off of what was happening at that moment. 

Medication was prescribed for any possible side effects of the radiation. Luckily I made it through the 10 days with no side effects. One positive to hold on to!

On the final day I received a certificate saying that I have successfully completed my radiation. Not a certificate that I will proudly display or add to my professional portfolio, but glad to have one more step behind me. 

Richard

Hurry up and Wait!

One thing is for sure, you need to be patient being a cancer patient. A great deal of time is spent waiting. Waiting for appointments, waiting for results, waiting for doctors and waiting for next steps. Being a 'get it done kind of guy', this is very difficult for me. Sitting in many different waiting rooms over the past few weeks, you can see others also patiently waiting. As I sit there I think to myself- Why are they here? Are they a patient or a caring support person? What type & stage of cancer do they have? What was their life like prior to their cancer diagnosis? What would they be doing if they didn't have to be here?

Most of us sit in silence waiting for our name to be called. There is an eerie silence. I find it difficult to strike up a conversation with others who are also waiting. What would I say? Will I offend someone? I'm not even sure that I would want to talk about my own journey out loud with others. As I look around the waiting room I get the sense of melancholy. It is as if all of us sitting here are frozen in time. Our lives have suddenly been put on hold and we focus on our individual cancer journey. And we wait!

Don't get me wrong the medical professionals are trying their best to keep on schedule and reduce the amount of time that we have to wait. I can imagine how difficult is must be for doctors, nurses and other health care professionals to meet with families, share results and updates. You can't rush this. Each family deserves the time they need to ask questions and understand what is happening every step of the way.

Waiting for news and outcomes is the hardest of all. Tests results take time and sometimes the time between the test and the sharing of results can seem like forever. Too often lately my results has not been positive. Despite this, we try to remain positive.

As a cancer patient or a family member of a cancer patient, we need to be patient. In most cases it is hurry up and then wait.

Richard

Food, Glorious Food!

Your don't realize what you are missing until you can't have it anymore. Food, glorious food!

After that first appointment I was told that I had to immediately go on a liquid diet as my esophagus was almost completely blocked by my tumour. This, I was told, was the the reason for my ongoing burps, hiccups and vomiting. Looking back, I am actually grateful for these symptoms, otherwise I might never have realized that I was sick and had cancer as no other signs or symptoms were present except for the rapid weight loss. I have been told that esophageal cancer doesn't give you many clues along the way. The tumour is quietly growing in your body without you even knowing it. The doctors indicated that often, once you are diagnosed, it is often too late. 

My new daily liquid diet consists of at least five Ensure calorie enhanced drinks a day. We try to supplement it with a variety of pureed soups and I have also been trying some small amounts of mashed potatoes and other pureed foods with some success. At first I thought, I can do this! Whatever it takes! My doctors indicated that they hoped that the radiation would shrink the tumour enough for me to eat some more solid food. Time will tell if this is an option.

Chocolate, strawberry, vanilla and butter pecan. These are my daily flavour choices. Sounds great! I love all of these sweet flavours. To be honest they don't actually taste all that bad but how I miss the savoury options in my diet. I never really feel hungry. The Ensures seem to fill my food needs. I don't really have cravings although I do miss all the glorious food options [solid food] that I used to eat. 

A few days into this new liquid diet, I realized (the hard way) that I needed to supplement my diet with fibre. I will spare you the details on this one but lets just say the words in the brackets say it all! When I added prune juice and Benefibre to my daily morning routine it helped a great deal!

You may not even realize it but food really consumes a great portion of our daily lives. I only understood the impact of food and how it permeates our day when limitations in my food options were made. Weekly food rituals include planning meal options, buying the food, bagging the food, unpacking the food, preparing the food, eating the food, clean up after eating the food, then planning all over again! The food cycle continues. When your food choices are made for you, this ritual is drastically altered. Bonus, you do save some time!

Thanks to Michelle and to my family for adjusting our food options and choices to help accommodate and adjust to my new diet. A few more mash potatoes, pureed vegetables and soups are on the menu now in our household.

A liquid or puree diet also has a negative impact on your social life. You don't really realize it but food is really an integral part of our social lives. My family loves to go out to restaurants and get takeout meals. Sometime for convenience sake (no cooking!) and other times for the variety of food choices and flavours. Often coming to consensus on a take out food option that we can all agree upon takes longer than the ordering and eating part! Going to a restaurant is another Erdmann family past time. A great way to connect with your family, catch up on the days events and have some quality family time. When you can only have liquids and puréed food items for your meals, this dramatically limits your ability to enjoy this important social aspect with your friends and family. Often it is difficult to find food as most restaurants have limited options in this area.

I encourage each of you to enjoy food in all its forms. Don't take it for granted. Be sure to enjoy the social aspects that food creates for your family and friends. Be sure to eat with your family or others! Go out and celebrate with each other. Have that dessert!  Enjoy the foods you love and makes you feel good (in moderation). Enjoy them! You don't know what you are missing until they are not longer an option. Eat the darn chips!

Food, Glorious food!

Richard

Needles, scans and tests oh my!

Over the next three weeks, a whirl wind of tests, scans and appointments were ordered to determine the stage of my cancer and my treatment path. Since the tumour was very large, time was of the essence. We decided to select treatment close to home. We are so fortunate to have a regional Cancer Centre so close to our home. I can't imagine having to travel great distances for these tests. What must others be going through to get this information. Being away from home, travel times to and from appointments and even parking fees. This just adds increased levels of stress and concern for families.

Having recently retired as an elementary school principal, I thought my days of appointments, schedules and calendars were behind me. My fellow retirees had told me that retirement was freedom!

Freedom would have to wait. I needed a calendar to sort out and keep up with all of tests, scans and doctors appointments that were being scheduled for me. These tests were the diagnostics needed to determine if my tumour was indeed cancer, and if so, what stage of cancer I had and what the treatment plan would be. 

I have had more needles poke through my body in the last few weeks then in my entire life up to this point. Not really fond of needles. Try to avoid them, whenever possible but I really didn't have a choice. Unfortunately not possible to avoid in these circumstances.

I must admit that I am a little bit afraid of confined spaces in general, but having a CT scan and an MRI really tested that for me!   Not knowing what to expect is really the scary part, along with the fact that you are placed in a small tube like machine and told to stay completely still for several minutes. Not easy for a generally hyper person like myself! I really surprised myself that I could remain perfectly still for 30 minutes in an enclosed space. I was proud of myself for being able to stay still for that long but again I really didn't have a choice. I wanted to be sure that the test was completed once and that they would get the information/results that they needed to complete the treatment plan.

On Friday, August 9th, Michelle and I met with the thoracic surgeon who confirmed that I indeed had esophageal cancer. More appointments were scheduled and the plan was to have surgery after radiation & chemotherapy to reduce, shrink or even kill the tumour and then take it out!

We continued on with our tests! Pulmonary function test, a gastroscopy and a endoscopy. The final and most important of all the tests was the PET scan we were told. It just happened to be the final appointment in my long list of appointments scheduled. This test would determine whether or not my cancer had spread beyond my esophagus into other parts of my body.

Let me tell you it was the scariest test of them all! Even worse then the MRI which says something. Noticing multiple signs about radioactive materials and Government of Canada warning posters were the first indication of concern. Having the nurse leave the room, go into a steel doored room and come out with a metal needle that looked like it was more appropriate for an elephant than a human was even more concerning. I was told to drink the liquid substance, was sent into a dark closet area to relax on a recliner for thirty minutes and then brought in for the test. Others, who had gone through this test before, had told me that you will light up like a Christmas tree if the cancer has spread to other areas of the body. At the end of the procedure, I was handed a disc to give to my surgeon and told I was able to leave.

Would Christmas come early or would the lights remain off? We would find out in two days.

Richard

Over the next 20 days

Stay positive! We can fight this. We can beat this, was what we both said to each other on the ride to Kingston later that afternoon. We agreed not to tell our three children until we returned after our visit to Kingston. How would we share this news with them?

Over the next 20 days a variety of tests, meetings and appointments would be booked. I was very impressed with the speed at which the initial diagnostic plan was set up.  The purpose of these tests was to confirm if indeed the tumour was cancerous and if so what the treatment options would be. I had so many appointments to keep track of that we had to start a calendar to keep up with them. Instead of basking in the enjoyment and planning of my second month of retirement,  I was busy visiting a variety of doctors, nurses and health care professionals to get scheduled to get a MRI, CT scan, PET scan, echo-cardiogram and this list goes on and on.

Although each of the doctors, nurses and health care workers and volunteers were polite and courteous, I couldn't help but feel that a large neon label was on me to indicate that I had cancer. At the end of each test, they would come up and briefly discuss what they found and say "Good luck" to me. What did that mean? "Good luck" was that a good sign or a bad sign? Michelle and I were not sure what to think of that comment. I guess it difficult to say anything at a time like this.

We still held out hope. Michelle began to research esophageal cancer and treatments. I secretly researched the stages of cancer. I really had no prior knowledge of cancer, cancer treatments or the fact that so many people are dealing with this diagnosis.

These twenty days were filled with appointments, tests, meetings and uncertainty. What is happening to me? Why? When will we know what will happen next. More questions than answers for sure.

Richard

Unexpected News

Friday, August 2nd, 2019. This is the day that changed my life path forever. What started as a simple appointment to determine the cause of my persistent heartburn symptoms turned into a life altering discovery that has led me on this new journey called cancer treatment.

For the past few months I have had increasing issues with eating solid foods. I would start to burp, hiccup and in some cases vomit my food. It started only happening on a few occasion but soon started to happen at almost every meal. I went to my family doctor to let him know. I was concerned because I had just had my annual physical and nothing seemed to come up. My family was also  beginning to worry as most dinners, I was running to the washroom and throwing up.

It was time to go to the doctor. At my appointment, my doctor weighed me and I had lost 15 pounds in three weeks. He immediately ordered an endoscopy for me. Within three days I got the appointment. Again, I was not too concerned at the time, as I thought it was my heartburn acting up again.

In the preparation room, getting  prepped for the procedure, I could hear the male nurse talk with other patients that were in recovery. He was telling one of them that they could go home now. He was telling them that the doctor only speaks with patients if there is a concern.

I knew something was wrong when that same nurse, after I had awoke from the anesthesia, told me that the doctor wanted to speak with me. He took me to the doctors office to wait. It seemed like forever, but a few minutes later, Michelle was brought into the room. She looked as puzzled as me as to why we were called into the office.  We had no idea about the news we were about to receive.

It didn't take long for us to hear the bad news. The doctor walked into the room, with a very concerned look on his face, sat down and immediately indicated that during the procedure he had noticed a large tumour had formed on my esophagus. He had then stated that it was almost completely blocking it. He was having difficulties going beyond it as it was so large. He felt that it was cancer, he took a biopsy sample of the tissue, and referred us to a specialist.   I was told that I would need to begin a liquid diet from that moment on as no solid foods would be able to get through. This was the cause of my ongoing burps, hiccups and vomiting.

It was that quick and that blunt. No pre-warning. We were in complete shock. What did he just say? Michelle was also at a loss for words. We couldn't believe what we were hearing. What? How? Why?

Devastation. Doubt. Shock. Tears. These were the first emotions and actions that followed. As we left the doctors office and crossed the street to get a cup of coffee to try to process this news, we hugged, cried and look at each other in complete disbelief. How could this be happening? When did this start? What did I do wrong?

The purpose of this blog will be to help share my own personal cancer journey with others. It is important to note that each person's journey is as unique as the person themselves. These are my experiences, my emotions, my thoughts. This is my cancer journey.

Richard