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.

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.)

Relay For Life

I will be participating in my 4th RELAY FOR LIFE on June 4th here in Brighton.

I am going to walk the Survivors Lap only this year so I am not going to hit anyone up for sponsoring me .  However, I do ask that if you are approached by someone asking to be sponsored you do so instead of sponsoring me.  You have all made my previous goals attainable and I am sure that you will help someone else attain their goal for themselves or their team.

We all benefit from the funds raised for Relay, I am living proof of that.

Thanks

Nancy

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.

Marc Wolfgram – RIP

Some of us never get a chance to meet the people who have made a difference in our lives.  I never had the pleasure of meeting Marc in person, however I did correspond with him through email on several occassions.  For those of you who read this blog who have never had Esophageal Cancer or been a caregiver to someone with EC you would not have a reason to know Marc.  But you see, if it were not for Marc I am not sure where I would be today.

Marc and his wife Tammy are the owner’s of a website called Cathy’s EC Cafe.  I found the Cafe on the night I was diagnosed with EC.  It was on page 26 of my google search and when I clicked on the link and went through the site I knew in my heart that no matter what happened to me I was not ALONE.

Prior to finding Cafe I had seen the stats, I had read about the awful fate I had been handed and if I wasn’t scared before I was now.  In finding the Cafe and in turn joining the ACOR ECG Listserve (another or Marc’s “babies”) I found a place where, although I was still scared, I didn’t have to be scared alone.  Everyone there had been there, done that and most of them had the scars to prove it!

Not too long ago a member of the ECG List thought that perhaps she should leave as her husband who had EC had passed away. I replied to her email (as below) and when Marc read it he asked for my permission to post it at at Cathy’s Cafe.  Of course I agreed…

This was my reply:

For M— and anyone else who wonders if staying on the list does any good.

I found this list the night was I was diagnosed, through Cathy’s EC Cafe. Within 24 hours of posting my story I had emails from all over the world telling me that I too could beat the beast. One of those emails was from Jane Pickett, our 35 year survivor. Some of those who emailed me are no longer with us and that makes me sad. That was almost 5 years ago.

I couldn’t imagine my life without this list. I have laughed with all of you and cried with all of you. You make me smile, you make me laugh and someday you make me downright angry but I still come back, day after day. Some days, this is home more than my physical home is.

We all have something to contribute – whether it is good, bad or indifferent.

The friends I have made from this list will always be my friends which is a little strange considering that for the most part I wouldn’t know you from Adam walking down the street. Those of you I have had the honor of meeting will forever be ingrained, not only in my head but also my heart.

As most will admit, this is not a group anyone wants to join, but once in, always in.

For me, leaving would be like cutting of a limb and sorry folks, but I have lost enough body parts to this disease as it is, I refuse to give up anymore. Perhaps it is the comfort of knowing that everyone here has been there, done that and won’t think that my questions and or suggestions are totally whacked! (Just a little bit, because, hey, it is me after all LOL).

So M—, don’t ever think that you are not helping someone because somewhere out there, someone will sleep a little better tonight, eat a little better tomorrow, and feel a whole lot better due to you!!!

Nancy

In a nutshell, that is what Marc did for me, he gave me a home, he gave me a family and he did this all “just because”.

Since surviving EC I have tried to be a better person- sometimes I am and sometimes I fail miserably but I still try and I know that if Marc had not given of himself the way he did, I would have given up long ago.

To his wife Tammy and his 3 beautiful daughters, you have my most heartfelt condolences.  I cannot imagine how sad and lost you must feel right now, but please know in your hearts that there are many of us who consider Marc an awesome human being and know that there is a special place in heaven for him and that he is there now.  I know you will all miss him terribly and so will I.

Marc Wolfgram - RIP

 

Marc W. Wolfgram

Marc W. Wolfgram of Hartland, died tragically on Monday, February 15, 2010 as the result of an automobile accident at the age of 55 years. Marc worked at GE Med Systems in Pewaukee, Eaton Corp. in Milwaukee and Rennaissance Learning in Wisconsin Rapids. Eventually, he was able to follow his dream and started his own computer business MacCetera. Marc was a consummate computer geek and Mac guru for all his customers, family and friends.

After conquering esophageal cancer in 1995, Marc devoted much of his time to running an online esophageal cancer support group and maintaining Cathy’s EC Cafe web site, to help others in their battles with esophageal cancer. Marc was an incredibly kind and giving person, with an ever-present sense of humor. He was a friend to everyone and earned people’s respect wherever he went.

He is survived by his wife of 26 years Tammara (nee Hoffman), his daughters Jennifer (Brian) Jambretz, Gwendolyn (Scott) Tracy and Megan Wolfgram, his grandchildren Breanna and Brian Jambretz Jr. and Kieran Tracy and his parents Gordon and Ruth (nee Fitch) Wolfgram. He is further survived by his brother Paul (Rachel) Wolfgram, nephew Michael Wolfgram, in-laws Harold and Patricia Hoffman, other relatives and many friends.

Friends may call at the Lake Country Unitarian Universalist Church, W299 N5595 Grace Drive, Hartland, WI on Friday, February 19, 2010 from 3:30 PM until Services at 6:30 PM. There will be refreshments following the Service. In lieu of flowers, memorials may be made to Citizens United for Research in Epilepsy or the charity of your choice.

 

Cathy’s EC Cafe    http://eccafe.org/

ECG Listserve  http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=EC-GROUP

What else?

I have been working on some projects, lest you think that while I was not writing my blog I have been sitting around doing nothing.  Well, I suppose for some of the time I have been sitting around but doing nothing is not part of my agenda.

Keeping mom and dad occupied is a tough job to say the least.  Boredom comes quickly for dad – mom is a little easier to placate.  But the toughest part is trying to make sure they have things to do.  Sue is pretty good at this – she manages to keep them doing things.  On the other hand I have a difficult time – I get tired fairly easy so after an hour or two of activities I am ready for a nap.  Only thing is that I can’t nap during the day…

Surviving cancer surgery was the easy part.  Surviving chemo and radiation was a little tougher.  It’s the everyday left over residual’s from the surgery et al that slows me down.  I am so envious of anyone who has travelled the cancer path (any variety of the disease) and has pretty well gotten their life back to “normal”.  I don’t even know what normal is anymore.  The biggest problems I have arrive from eating and I know I do have to eat but in all honesty it is more of a pain than not eating.  When the food does go down it sits in what is left of my stomach like a stone.  And then, when it decides to move on, it does LOL.  Usually with no warning.  And it doesn’t matter what it is.  Today it works, tomorrow it doesn’t.  Junk food has become my friend once again – by junk food I mean tostidos and salsa.  For this week, at least it is working.  What used to work – well, its a crap shoot LOL.  This is grapefruit season and since dad can only have 1 a week due to his meds I decided to treat us this week.  Well, big mistake.  I used to be able to eat one a day.  Half on Monday morning and I am still paying for it!!!! Oh well. Guess there are worse things than not being able to eat…

Anyhow, my new project has been sending “care packages” to Canadian troops stationed in Afghanistan.  I am not sure why I feel so strongly about this, but I do.  Everytime another Repatriation happens in Trenton I get more and more angry.  Canadian Troops are PeaceKeepers.  We, as a country, are not at war with anyone and yet …

One night I was surfing the net and found a website called Chosen Soldier.  In a nutshell Chosen Soldier provides names of Canadian troops who would like to receive something from home – it doesn’t have to be anything major and reading the list of things that they have come up with was both funny and sad at the same time.  We take so many things for granted at home, having no clue what it is like to go without some of the creature comforts we have become so used to having.  Simple things really, lip balm, toilet paper, KD (Kraft Dinner for those who are not KD affectionados), potato chips – like I said simple things.

So I got a name from Chosen Soldier and started to put together a box to send.  Thanks to the Military (and for once I can understand their reasoning), a package has to conform to a certain size.  The size is about the same as a case of beer which empty looks fairly large, but start to fill it and it does fill up fast.

In my usual insane manner I over bought items for the box. ( I know, I know, those of you who know me, know that I was doomed to over buy from the get-go LOL). To make a long story short, I dropped off two boxes today at the base in Trenton for shipping and will continue to drop boxes off as much as I can.  The military also says that I can send a letter to “any soldier” but to send a package I need to have a name and rank.  So, I added a letter in each box telling my “Chosen Soldier” to pass along my email addy to anyone who wants a package and I will comply.  If I disappear for a while again, you will know that I disregarded the Dept of National Defence’s list of contraband (LMAO).

What I fail to understand is why a lot of these items are not provided to our soldiers by the military.  How tough would it be to hand out Easy Mac or a bag of candy every once in a while.  Nonetheless I shall continue my little endevour until I am no longer able or until the last Canadian Soldier comes home.  I have heard via the media that Canada is due to have it’s troops out by 2011.  Ya right, I will believe that when I see it!!!!! I am hopeful that once the packages get there I will have some more names to keep me busy. If you would like to contribute to my cause – go get a Tim Horton’s gift card and address it to :

Any Canadian Soldier

OP ATHENA

PO Box 5058 Stn Forces

Belleville ON K8N 5W6

There is a Tim’s at the base in Kandahar and it accepts Tim’s cards in Canadian dollars.  Buy a soldier a coffee and a muffin/donut.  It’s the least we can do.  You can mail the letter postage free too – Canada Post is allowing letter to be sent for free for the duration of the “war”.  For once, CP is actually showing a human side.  This has to be a first.  Or you can email me and when the names start coming in you can send your own package.  However, unless you live close to a base and can drop it off – it can get expensive.  CP has stopped the free package mailing…(of course anything from CP  for any length of time is not going to happen).  See – too good to be true LOLOLOLOL.

You can visit Chosen Soldier and see what they are all about at http://trevlac.biz/Chosen_Soldier.htm

It really is a great story and a worthwhile cause – at least in my opinion.  I cannot imagine being so far away from my family and friends trying to help people which dodging bullets and trying to avoid IED’s.  Call me crazy but…

That’s about it for tonight. I am tired and it is time to shut down the puter and get some rest.  Tomorrow dad has group at 10:00 and |I have a ton of stuff to do before the weekend.

Take care.

nancy

Under The Influence

Over the last month I have undergone my annual check ups following my treatments for Esophageal Cancer. I am happy to report that all is great!  My CAT scan was normal, no evidence of disease.  My gastroscope looked fine.  For 5 years out I am part of a miracle – I survived the second most deadly cancer out there and by the look of it, I will be lucky enough to celebrate my 6th Anniversary next year. That may be putting the cart before the horse however, the enthusiasm I get from my doctor’s gives me hope that I have beaten the “Beast” and will continue to do so.  But I will admit that there will always be that little voice in the back of my head saying that sooner or later it will return.  Pessimistic – no, not really.  I prefer to think I am realistic.  EC has a nasty habit of returning, more so than any other  cancer so I would rather think that it might return rather than be totally shocked if it does.  If nothing else I have learned that nothing is impossible.

I have had many scopes – I lost count after a while.  I was having them every 3 months at one time.  It was always the same thing:  appointment booked for first thing in the morning, usually the first or second patient of the day.  In by 7:00 am out by 9:30 am, no worse for wear.  Grab something to eat on the way home, usually Burger King French Toast and at least a good cup of coffee.  By the time I got home, I was ready for the day – no need to sleep or rest; I was fine.  I was never groggy or disoriented from the sedative I had been given for the scope.  In fact, I could never understand why I was not allowed to leave the hospital on my own.  No, I had to be wheeled out to a waiting vehile after signing a waiver that I would not be left alone for 24 hours and I would not drive a car.  Ya, whatever!!!!  For a time when Jeff and I were still together he would drop me off at the hospital, come get me when I was done and then I would get my car at his place and go home.  No big deal!

But, that was then and this is now.  I have no recollection of the things I was told today I did after the scope.  In fact, when Sue told me I was a little surprised of my actions.  Ok, not really surprised, I did manage to burst out laughing while trying to drive the car.

Apparently, and this is the story Sue is sticking to, after my scope they let her in to sit with me.  Gastro Guy came in and said everything was ok – see ya next year (if I thought I needed a scope at that time).  I then took off the blood pressure cuff and out it on Sue’s arm…I also removed the monitor from my finger that recorded my breathing.  And all the while I was laughing my head off.  Sue quickly removed the BP cuff from her arm and put it back on me, just in time too because Nurse Ratchet came in and gave me hell because they needed to “record” my vitals before they would let me leave. Of course I laughed at her too!!!  I haven’t heard from Gastro Guy’s office that I have been “banned” from the Day Surgery unit at the hospital and I probably won’t but I think my reputation as a “model patient” has now come to an end.

BUT, I do have a defence…

It has only been in the last year that I have been taking meds to control the residual pain that I have from my surgery and subsequent chemoradiation. My upper right side (mostly right arm) is in constant pain.  This, I had explained to me is because when the thorocotomy portion of my surgery was performed there were many lymph nodes removed from that part of my body.  Lymph nodes provide a type of filtration system and drainage system for  the lymphatic system.  The fluid that would normally accumulate in those nodes has nowhere to go and thus does not drain properly.  This is an after effect that affects many Breast Cancer Surgery patients also.  Combined with the loss of the lymph nodes, the nerve paths that were severed by the thorocotomy and the general area in which all this occured it is unlikely that I will ever regain the strength or agility that I once had.  Additionally the pain will likely lessen overtime and become more managable without pain medication but that remains to be seen.  So, for the time being I take medication to control the pain.  During the day I take ibruprophen  (Advil, Motrin etc), however by the end of the day I am tired and the ibruprophen just doesn’t do the trick so I take Demerol to kill the pain and hope for a peaceful nights sleep.  Sometimes it works, and sometimes I take an extra Demerol just so I can get an hour or two of shut eye. (Extra as in 3 instead of 2 every 4 hours).  Originally, I refused to take the pain meds, but then I learned that if you do not control your pain, it will control you!  Add in the back pain from the radiation  and the overall pain every where else from the surgery and some days I was ready to pack it in and give up.  After speaking with my surgeons and oncologists and getting the “You will not become addicted if you have real pain” speech I agreed to take the meds. (And the pain is real.  I don’t always let on about how much pain I am really in – it seems pointless, there is nothing anyone can do so why dwell on it.  Some days it is bad enough that lifting my purse is almost impossible – and believe me my purse is not as heavy as it once was – I have learned to scale down on what I carry on a daily basis. It is also the type of pain that, at times, catches me totally by surprise, causing me to drop whatever I have in my hand or arm.  This is not a good thing if I am carrying groceries – there are many times when I return home with scrambled eggs in the grocery bag.)  It took a while to figure out which ones worked the best.  Morphine did nothing but make me tired and want to sleep. It did not get rid of the pain.  And since it was a very low dose I didn’t even get the benefit of the “Still got the pain but don’t care” morphine “high”.  I have a nasty reaction to Codeine so that was out.  After some trials and tribulations my Dr. went with the Demerol and I have been taking that since.

The night before my scope I could not injest anything after midnight.  I took my meds around 10:00 which is  earlier than usual.  I had nothing to eat after the pills which meant they were taken on an empty stomach and in the morning I had nothing to eat before heading to the hospital at 8:45am.

For the scope I am given a cocktail of Versed and Demerol. When the scope is completed I have no recollection of it but as I said I am usually wide awake, alert and able to drive.  For what ever reason, that was not the case this time.  Not only do I not remember the hospital shenanigans, when I did finally get home I was ok for about 10 minutes and then felt very ill and went to lie down.  It was almost 4 hours before I got up.

So I have learned my lesson – from here out I will follow instructions to the nth degree and not complain that I cannot leave the hospital under my own “steam”.  I will stop being adamant that I can walk out, I will accept the wheelchair ride with grace and say thank you when I get out the door.  I will accept the ride home with gratitude and will no longer be a “pain in the butt” to whomever is giving me said ride home.  I will take a nap when I get home whether I need it or not.  I will become the wimp that I have always said I am not!!!!!

It’s really burns my butt that I have to concede this defeat.  But I will and I will do so quietly… NOT!!!!!!!!!!!

 

Have a safe and fun Labour Day Weekend.

Nancy

5 Years and counting

Although my official date is not until October 28, 2009, I had my 5th year annual check up with the Radiation Oncologist this past Wednesday.

I really never thought I would see the 5 year mark.  The surgery went well, the chemo and radiation went well while they were happening.  However, it was the after effects of said radiation and chemo that almost killed me.

Happily enough I managed to kick them in the ass and well, here I am 5 years later.  Somedays I almost forget – but then a little twitch or pain shows up and I am again reminded that I am a SURVIVOR.  That’s right I am A CANCER SURVIVOR and try as I may, I will never really forget.  And to be truthful I don’t want to forget.  Forgetting would mean that I didn’t care and that’s just not true.

 

See, as I have said before I will tell anyone who will listen and even those who won’t about the dangers of heartburn and living on antacids and prescription Acid Reflex drugs.  Listen up people, believe me YOU DO NOT WANT TO GO THROUGH WHAT I DID!!!!

Although cancer stats are getting better on the whole there are some that are not getting better and EC is one of them. 

I implore you – if you suffer from heartburn on a regular basis please, please see your Doctor and demand that you get a scope.  Barrett’s Esophagus is now becoming a “common” disease and it can be treated.  A very small percentage of people diagnosed with Barrett’s will be diagnosed with EC.  I cannot see wating till that time – so if you have heartburn, if you scarf down handfuls of Rolaids or Tums and they are becoming one of your major food groups, go to the Doctor.  Do not pass GO, do not collect $200.  JUST GO!!!!!

I am one of the lucky ones thus far – don’t wait to be able to call yourself LUCKY because it might not happen that way.

I know I go on and on about EC but I have to.  No one and I mean no one would want to have this incidious form of cancer.  Believe ME.

 

Nancy

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.

I DID IT!!!!!!

A while back I posted that I was a chicken to get a tattoo…

Well, that was then and this is now…

Last Friday night I went and had MY TAT DONE!!!!!

Ok, so it hurt like hell, but you know what I always say, a little pain never hurt anyone.

So, without any further ado…

 

EC Awareness Tattoo

It is on my back right shoulder.  I already know what my next one is going to be LOL.  Someone told me that once you had one,  addiction followed.  I don’t think I am going to get more than 1 more…well, maybe 2.

So for all you doubter’s who were sure I would chicken out once again, sorry to disappoint you.

I LOVE MY TATTOO.