Back to the Drawing Board......

Well we got that dreaded phone call again! This week my oncologist called to share the results of my most recent CT scan. These scans are regularly scheduled on a quarterly basis to keep track of the progress/lack of progress of my cancer treatment. You might remember that after my last CT scan, we got a call from my oncologist a day later with bad news. He regrettably explained that my current treatment wasn't working to halt the growth of my cancer tumours and therefore this  line of treatment would have to be discontinued and I was started on the third line of treatment option, or what we affectionately called "Plan C". He indicated that this was the last line of defense that they have available and approved to deal with my cancer. With it came the return of 'bottle buddy', the PICC line back in and bi-weekly trips to the chemo suite! We'd been on this path for about 3 months, and it was time for another scan.

This time around we got no early phone call after my CT scan. This had to mean that this was good news, right?  I was wrong! It was not good news.

On the scheduled call, he indicated that the third line of treatment I was currently on was unfortunately providing mixed results. Although most of my tumours remained stable, the tumours in my liver were actually growing. Not by much, but they were continuing to grow. This meant that this line of treatment wasn't being successful. It was not doing its job.  

Disappointing news for sure and very upsetting for our family. What was next? Was there a plan D for me? This third line of treatment was considered the final level 

of defense for esophageal cancer.  What I have going for me, is that despite what the CT scan is showing, I feel pretty well and functioning as normal.  But no doubt about it, cancer in your liver is not good news. I have once again been referred to the Princess Margaret Hospital to seek eligibility in some newer and earlier phase cancer clinical trials that hopefully this time I will qualify for. Our hope is that there will be one that is safe, appropriate for me and has some promising results. Fingers crossed.

I guess I should consider myself lucky. Most patients with esophageal cancer don't make it this far or for this long. I am truly an outlier! This was our hope and dream. I guess we will now need to be  trailblazers too!  With persistence, a positive attitude, the love and strength of my wife and family and just a little bit of luck, I will continue to be a positive outlier! 

Staying positive, staying hopeful and planning to pave a new trail for myself and others to come! 

Thank you for your continued care and concern. It is so much appreciated.

Plan D, here I come!

Richard

A Blessing and a Curse

This week has been both a blessing and a curse for me and my family.

The rollercoaster ride that cancer can take you on is always mixed with both positive and negative news. There are ups and downs, highs and lows and sometimes you can experience both in the very same day! Small victories and minor defeats are part of life as a patient with cancer, especially a stage 4 cancer patient. As a family we try to celebrate the victories and downplay the defeats. We pray for as many small victories along the way as possible. We are thankful that we have had a few!

This week we experienced both a small blessing (at least we think it is) and a minor curse (hopefully). In a previous blog I mentioned that my medical team has been monitoring a small tumour in my brain that they were unsure of whether or not was cancerous.  Last week I had my next scheduled MRI followed by my consult with my radiation oncologist . I am pleased to report that they feel that this tumour is not cancerous. They will continue to monitor it but its a small victory! We take it when we can get it!

On the concerning side, my hiccups have returned and are becoming more frequent during eating. It is becoming difficult to eat tough meats like steak or well done meats. At the moment, I seem to be able to tolerate other meats but need to cut them into smaller pieces and eat them slowly. My years in education (both as a teacher and administrator) have trained me to eat fast (and usually on the go!). I have had to slowly retrain myself to slow down while eating. Still a work in progress according to my family. 

In my blog post Food, Glorious Food! I talk about how I had to change to a liquid only diet. Let me tell you that this is something that I hope I don't have to return to. A liquid only diet is not something that I would wish on anyone. Don't get me wrong, I will struggle through it if I have to.

When I start to hiccup at the dinner table or have difficulty eating, you can see the look of concern on the faces of my family members. This is probably due to the fact that it reminds us all of how my cancer journey began and what it has taken away from our lives already. My hope is that this is only a small set back. Only time will tell what is in store for me regarding food. In the meantime, we will consider this a minor curse and hope for the best. I will continue to eat all my favourite food (minus the well done steak) until the point where this may not be possible.

I encourage you to savour the flavours of your favourite foods (don't take them for granted) and enjoy the social interactions that eating together with others (family & friends) provides. Celebrate your blessings, no matter how small, and don't forget to enjoy your steak (LOL).

Richard

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 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

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