Serendopeity

The faculty of making stupid discoveries by accident. The name of my first Fantasy Football Team. Neither of which have anything to do with this blog. I just like the word. Deal with it !!!!!!

Category Archives: EC Story

Six years and counting – Part 2

Not all cancer centres in Ontario have radiation capabilities. I was accepted as a patient at the Kinston Regional Cancer Centre in Kingston, Ontario. Although I could have my last two rounds of chemo closer to home, Kingston was as close as I could get for my radiation. So, how close is close? A drive to Kingston from where I live is approximately 80 miles or about 130 kms. Because it is over 40 kms I was eligible to stay at the Quinte 1000 Islands Cancer Lodge in Kingston as I would have at least one radiation treatment a day.

If you have ever donated to the Canadian Cancer Society, by any means, I can tell you where some of the money goes. A lot of people think that the donations are used for Cancer Research only, but they aren’t. Each city with a Cancer Centre has a lodge. It’s kinda like Ronald McDonald House in that patients who are far from home can stay, at no charge (for the most part) for the duration of their treatment. Additionally, if there is no room available at the lodge, patients are housed at local hotels – all on the Cancer Society’s dime. Staying at the lodge does have its drawbacks – but at the end of the day, as a patient, the only other place that would have been better for me was home. The great thing about the lodge is that everyone there is in the same boat – we all had cancer and we were all undergoing treatment in one form or another. Not everyone was having chemotherapy and concurrent radiation. Some were either/or. But it didn’t matter. A group of people with similar circumstances were brought together under the same roof. We laughed together, we often cried together but the operative word here is together. No longer alone, I made some friends that to this day remain such.

I began my chemo/rad protocol on a Monday morning. Rule one of Cancer treatment is be prepared to sit around and wait. I get really angry at those who complain about this – get over yourself – look around. There are probably people in this room with you who will not see next month let alone next year. My first week was chemo and rad. I had done my research, talked to all my doctors and knew what to expect, at least I thought I did. I was wrong. Somewhere in all of the reading, listening and learning I missed the part that said chemo could have an effect on my emotional well-being as well as my physical. This became painfully evident the first week. My fanny pac of 5FU began acting up on the first day, the alarm going off kept me awake all night. The next day when I went to the clinic for day 2 I begged them to stop the 5FU fanny pac. However the nurses, pros that they were figured out the problem and the fanny pac stayed. Score 1 for the nurses. My rad techs, Wendy and Sonja were awesome. It took 15 minutes to set me up for 30 seconds of beam. Once done the day was mine.

On Thursday of that first week, I was ready to go home. I couldn’t eat, couldn’t sleep and although the 5FU was in a bag and being pumped into my arm I could smell it which made me nauseous all the time. I went to my morning rad appointment. Ever so cheerful Wendy called my name and when I met up with her she asked me what was wrong. “Nothing”. “Come on kid, what’s wrong?” at which I totally lost it and told her I was done, not coming back, let the chips fall where they may, blah, blah, blah. Wendy took me into the rad room and set me up. When we were done she took me by that arm and down the hall to yet another room in the clinic. We were met by my Rad Onc’s primary nurse Sylvie. It took over an hour, but in that time the three of us laughed, cried and came to an understanding. The chemo was the culprit – and was not only attacking my physical body but also my psychological one. Ahh, so that was it!!!! Without that talk I would not have continued my chemo/rad. I would have left Kingston the next day and never went back. I returned on Monday for week 2. The following 3 weeks were rad weeks only and in week 5 I was again hooked up for chemo. It took over an hour to find a vein and even then it was a chore. I stood with my arms in water and when not in the warm water I was wrapped in hot towels, trying to coax a vein out that could be plundered.

Finally hooked up, the poisonous drip began again. On Wednesday while the cisplatin was dripping my arm started swelling – kind of like the Elephant Man. The vein was blown! I was rushed to the ER, where I had a PICC line inserted and then back to the clinic to continue. Why they didn’t insert a PICC line in week 1 is beyond me! It was so much easier for all injectables with the PICC line. I firmly believe that PICC’s and Ports should be standard for any chemo that requires a vein.

The remaining rad treatments and chemo rounds produced the “usual” side effects. After 5 ½ weeks of radiation and 2 rounds of chemo I was able to return home and complete the last 2 rounds of chemo at a clinic closer to home. 5 ½ weeks had taken its toll and that weekend I was so sick I really think I wanted to die. Thank god for home care nurses. I had been sent home with anti-nausea drugs, all types – and each time a nurse came, I got a shot and when a nurse wasn’t due dad would bundle me up and take me to the ER and they would shoot me up, check my hydration levels and feed me popsicles.

I was taking a beating with round 2 – days were spent on the couch or in the bathroom. It would take me much too much time to get the energy to get to the bathroom and then more time to garner the energy to get back to the couch. It was not a happy time in my life.

I met with a new Oncologist at the Belleville General Hospital who would administer rounds 3 and 4. I told him that I had been so sick that if he couldn’t guarantee that the next two rounds were going to make a difference and endure that I would never get cancer again, I wasn’t going to submit. Now, I knew he couldn’t guarantee that – he knew he couldn’t but in my chemo induced ridiculousness it was a way of saying I was done, game over. He asked me to please try it one more time, his way, which was much different than it had been in Kingston. In addition to the obvious he was also really big on hydration. It would mean longer hours in the chemo clinic and a couple of extra days with the 5FU fanny pac after each round, but he was as sure as he could be that the last two rounds would be easier than the first 2. For whatever reason, I agreed to try it!

And he was right. The additional hydration made a world of difference. Instead of 50mls of saline with the cisplatin drip I received 50mls before, 50 mls with and then 50mls after the drip. At the end of the week, I was sent home with a fanny pac still in place but instead of the dreaded 5FU it was loaded with 1000 mls of saline. When that bag was gone, my home nurse hooked me up to another 1000 mls, and then another. When that was gone, the fanny pac was removed. If you have ever undergone any type of chemo, you know that the faster the stuff is flushed out of your body, the faster the side effects are lessened. Additionally, for someone who’s ability to eat and keep down any food, hydration is a major concern. Once your body is dehydrated it starts to slow down and all organs can be affected to the point of shutting down. It is so important to ensure that ones kidneys are working and dehydration can lead to kidney failure in a very short period of time. And that is never a good thing!

Round 3 of chemo was very uneventful and the side effects I had suffered with the first 2 rounds were still there, but not nearly as bad. In fact, round 3 was so easy I announced to my Onc that I was ready to get round 4 done, in the can and be done with it all. Chemo does some nasty things to a body so I had to wait the 3 weeks till I could undergo the final round.

Round 4 came and the week went by fairly uneventful. When I was leaving the clinic on the Friday afternoon I told the nurses that I was glad that I would not have to see them everyday but not to take it personally. I would still see them weekly for a while but not daily while they were dripping that stuff into my body. We all laughed and after the hugs were over – I went home.

I WAS DONE. 28 radiation treatments, 4 rounds of chemo. It was over! The drive home was bittersweet; I had spent the past 4 months in the company of doctors and nurses daily. They had become a major part of my life. I would miss that, but at the same time, it was time to move on and heal once and for all.

Well as luck would have it, that wasn’t to be in the cards. Upon walking into the house I spied the light on the phone flashing…

It was one of the nurses at the clinic. I was to sit down and try not to move much – there was a home care nurse on her way over. She would explain further when she got there but until she did, sit down and relax. Ok I could sit down – but relax – ya sure – what the hell was wrong now?

My nurse showed up within minutes of me getting the message armed with a bottle of something and a needle. Apparently my magnesium level was dangerously (read possibly fatally) low and I could have had a heart attack at any moment. Good thing they didn’t tell me that on the phone or I probably would have. Additionally my potassium level was very low. The drip she started that day would be the start of 18 weeks of hell…

During the following 18 weeks I had a magnesium drip once a week. Usually on a Tuesday, then on Thursday a nurse would return and draw blood to check and see how I was responding treatment.

Chemo is a good news/bad news thing. It helps to eradicate any rogue cancer cells from your body but at the same time it destroys the stuff you need to survive. I was physically sick from the chemo and it was depleting my body of the minerals it needed to survive, I just didn’t know it at the time. My eating was sporadic at best and although I knew I had to eat to live, it was a major feat just to get anything down and keep it down. Popsicles were my new found best friend – they kept me hydrated.

During this time I also had to have a CAT scan. Try drinking 32 ounces of contrast when you can barely get down a Popsicle.

Finally in December 2005 my PICC line was removed. I was done!!! It had been over a year since I was diagnosed. Just under a year since my surgery and subsequent radiation and chemo treatments. I had battled the beast and won!!!

I had CT scans every 3 months the first year, then down to every 6 months and finally in Year 5 I had an annual CT scan. That was over a year ago. All my Oncologists agreed that CT scans were no longer needed. (They can cause cancer dontcha know?) I do however have an annual scope. Also in Year 5 I was given the option of not having anymore however, I still do. An ounce of prevention…

The only Oncologist I see now is my Rad Onc. When I saw him in Year 5, I asked if that was it for him too. He said no, he would keep an eye on me for another 5 years. I like that – when I was released by most of my Doctor’s I felt an odd sense of abandonment, one I still have from time to time, but I know that they are never more than a phone call away. I keep in touch with them, more just to say hi but also to keep the lines of communication open should I ever need them again.

Writing this has been kind of cathartic for me. I have never really sat done and spelled a lot of this out. I have a journal from day 1 but have never put it all together. There never seemed to be a need for it. I lived it – I beat it. There were days that I wanted to give up and apparently there were days when I was so close to dying that it’s probably a good thing I didn’t know it at the time. But, dying was never an option for me. I was too young to die and there are too many things left in this world that I want to do.

I still suffer from side effects from surgery and radiation more so than from chemo even though it was the chemo that almost killed me. I have a mouth full of rotting teeth thanks to the chemo and sometimes my thoughts get a little confused, which can also be attributed to the damn chemicals but other than some minor inconveniences I consider myself to be so very very lucky to still be alive.

I am unable to work full time, my body cannot take it. I need a nap for the most part. I have spinal stenosis: I have a cyst on my left kidney stem both possibly from radiation. I have a radiation scar on my right lung which sometimes makes breathing difficult. I have eating issues – what I can eat today does not mean I can eat it tomorrow. Dumping was not an issue until almost 3 years after the fact. My right side is still painful and requires pain medication. However, these are small things in the grand scheme of things. Some of the left over side effects did not appear until well after all the treatments had been completed and there has been some question as to whether they are indeed a result of the treatments or a result of that other malady I suffer – getting older.

I can live with side effects and I am doing my best to do just that! 

Thanks for sticking by me – it is always a comfort to know that no matter how alone I feel, I am never truly alone.

Nancy

Oct 31, 2010.

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6 Years and Counting Part One

On August 28, 2004 I had my very first scope. After a couple of months of not being able to swallow my food and an unrelated (or was it?) trip to the ER I was referred to Dr. Sean McIlreath, a specialist in Endoscopies. He became the first in a long line of Doctors who would be instrumental in saving my life!

In a nutshell, I was diagnosed on October 28, 2004 with Adenocarcinoma of the Esophagus – in layman’s term, Esophageal Cancer. At what felt like a snail’s pace back then I had a CAT scan, saw yet another surgeon, Dr. Ted Young at St, Joseph’s Hospital in Hamilton and was scheduled for surgery in November. On December 30, 2004 I had life saving and altering surgery. The surgery, which was supposed to last about 8 hours, didn’t and when I hit the recovery room I was a little smart assy with Dr. Young so he sent me straight to step down instead of ICU – he told his nurse that I didn’t need ICU and did so laughing, a rarity for Dr. Young I’m sure. Into a regular room in 2 days and out of the hospital in 7 days (It would have been six but there was an ice storm and it was easier for me to stay than to get home). I had been told that I would probably be in the hospital for 12 – 15 days. I was Dr. Young’s poster girl for EC back then Each time he came to see me in the hospital (at least twice a day) he would ask me “How’s the pain?” and each time I would answer “What pain?” He would smile and say “That’s my girl”. It’s probably wrong on so many levels but I do truly miss Dr. Young!!!!

Although he left a roadmap of scars on the outside of my body, reduced the number of organs on the inside and left a flotilla of shiny clips as a beacon to the treatment to come, his most important legacy (aside from saving my life of course) was the imprint he left on my heart. If not for the amazing surgical skills of this man and his awesome team I would not be here today!

I spent the next 6 weeks at my Aunt’s home in Burlington. A home filled with love and compassion and a short distance from Dr. Young and St. Joe’s Hospital in Hamilton if the need arose. Thankfully it didn’t, my only return visit was a week after surgery to get the results from the pathology tests of my removed innards during surgery and to plan the rest of my recovery. I thought I was scared before the surgery – it was nothing. I slept through that and then spent the next week so stoned that I barely remember much of it. My trip to see Dr. Young a week after the surgery was the scariest ride I had ever been on. Until he saw the pathology report he couldn’t tell me how advanced my cancer was, nor could he tell me what I had to look forward too.

Well, as luck (?) would have, all of the 50+ lymph nodes he removed were clean – my cancer was contained in the orange sized tumour he removed from the base of my esophagus. Along with the tumour he removed my entire esophagus, approximately 12 inches leaving a 2 inch stub at the back of my throat in which he pulled up the remaining 1/3 of my stomach (he removed 2/3 of my stomach for good measure) and attached it to the stub. Dr. Young recommended that I undergo radiation and chemotherapy as “insurance”, in case any pesky little cancer cells got away or were hiding just waiting for an opportunity to strike back. I readily agreed. I could go home (to Brighton) and have my chemo and radiation in Kingston which was closer to home than staying in Burlington.

Now, let’s be real here – I loved staying in Burlington. I was pampered, taken care of, had every need and want catered to by my Aunt Joy, a woman who words cannot even begin to describe…If I could ever nominate anyone for sainthood – it would be her! But I digress (yet once again). I chose Kingston. As much as being taken care of was awesome, I needed to go home.

The first oncologist I saw in Kingston would be the doctor who administered my chemo drugs. I would be given a cocktail of Cisplatin and 5FU (a drug so aptly named it is not even funny). It would be a 4 round protocol. One week on (with concurrent radiation – the radiation helped activate the drugs) 3 weeks off the chemo but continuing the radiation, one week on during the last week of radiation. The last 2 rounds of chemo would be administered even closer to home in Belleville. The second oncologist was Dr. Falkson, my radiation onc. He went through the radiation process with me and then told me that I should go home and think about it…HUH???? What was there to think about? I was 44 years old, in good health except of course for the cancer. I had nothing to lose, everything to gain. Now, I guess this is where I should add that the stats on Esophageal Cancer are not good, at best. Back then, the average mean time of survival was 27 months after diagnosis. 27 MONTHS!!!!!! However, mine had been caught in early stages so I had a “better” chance of survival past the 27 months. So I asked him point blank – If I walk out that door now and never come back what are the odds. He replied about 15%. So, I ask, what if I stay. His reply about 45%. So I say – Let’s do it!!!!

And so it began…

(If you have read this far, I thank you. I didn’t realize when I started to type how long a story this condensation of the story really was. I suppose I am giving away all the good stuff so you won’t have to buy the book, should it ever come out! You can thank me later.)

New Page Added

I have added a new page to Serendopeity.

It’s called Dr. Oz explains EC

Check it out, there is a link to a video of him explaining Esophageal Cancer as caused by Acid Reflux and his remark about people suffering from EC using over the counter remedies.

Heads Up

The July issue of the Canadian Edition of  Readers Digest is on sale now.

I personally bought 16 copies of it today at the local Sobey’s store LOL.  Ok, I’ll admit it, it was all the copies they had.

If you happen to come across one, page 36 is an article about the dangers of heartburn and how it can kill you.  The article was written by Cheryl Hawkes who lost her husband Bill Cameron to EC.  And did I mention that there is a paragraph or 3 about MOI???????  Oh well, if I hadn’t on many other occassions I am now…

Cheryl and I became friends because of EC, and have remained friends.  I think she is an awesome woman.  Additionally she is an awesome journalist.

Pick up a copy and see for yourself.

 

We now return you to our regulary  scheduled programming.

For my EC Readers – and my Non-EC readers too!!!

I have added a new page to Serendopeity.  It is one man’s story of his journey with EC.  Bill Cameron was a much respected and well loved Canadian broadcaster and journalist.  I can remember watching him on CITY TV and CBC but I never had the pleasure if meeting him in person.  However, through my own journey with EC I have been priviledged to meet and become friends with his wife, Cheryl Hawkes. 

Cheryl is an amazing woman and I consider myself very lucky and most proud  to be able to call her my friend.  Thank you Cheryl for allowing me to reprint Bill’s article here at Serendopeity.

Through Cheryl’s tireless efforts the City of Toronto annually recognizes Esophageal Cancer with an EC Awareness week in May.  This has grown from the first year of it’s  inception from a day to a whole week.  It starts tomorrow May 10 – May 16, 2009.   See the Proclamation by the Mayor of Toronto here.

 Additionally the City of Toronto also named a street in Bill’s honour in the neighbourhood that Cheryl and her children still call home. 

Also through Cheryl’s efforts there is now a fund at Princess Margaret Hospital in Toronto that is specifically for research into EC.  Many people ask how they can help – here it is.  To my knowledge it is the only EC specific fund in Canada.  You can make a donation here if you so wish.  You can also read a special message from Cheryl by following the link on the left hand side of the page.

If you have a minute, please read Chasing the Crab.  It was the last piece Bill  wrote and truly captures the “realness” of battling Esophageal Cancer.

Nancy