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: surviving

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 link added

I was invited to be part of a beta test for a new cancer related website Navigating Cancer when it first began.

It is now up and running to everyone and anyone.  I have included the link in the Help and Hope section.

If you are new to the Cancer Journey, Navigating Cancer has an awesome organizer to help you keep track of appointments etc and has a daily monitor on how you are feeling tha tyou can keep track of your moods and pain levels etc.

I highly recommend this website to any of you who find the Cancer Journey overwhelming…and let’s face it, who of us don’t or didn’t in the beginning.

Cheers

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

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

Guest Post: LEAP of FAITH (to all cancer warriors/families)

I was blog surfing last night and came across this blog. I was very impressed by the writing.  This post put into words what so many of us feel and think but cannot figure out how to say it – Keith Ng has done an excellent job in saying it!!!!

I asked Keith if I could repost this on Serendopeity and he agreed.  I wanted to post it here as I think it can help many of us explain how we feel.  I don’t know about you but I sometimes have a hard time putting into words how I feel about a lot of my cancer experience.  I can talk about Esophageal Cancer until I am blue in the face, but trying to explain how I feel personally about the disease is sometimes a futile attempt.

So with Keith’s permission I present:

LEAP OF FAITH

To all cancer warriors and their family members:

 Cancer does not and will not define who you are. It is just a part of life. Everyone of us have our own trials and obstacles. But it does not define who you are. If you have goals and dreams that you want to pursue, don’t stop. Go ahead and accomplish what you want. Just because you are restricted in some ways, it does not mean you’re restricted completely. Don’t stop living. Set your goals. This is just your particular journey, your particular experience. You may have to modify the way you can achieve them, but complete them in the best way that you can. Just be realistic as well. Keep going, while knowing what your limitations are. Having cancer, of course, it is inevitable that you have days which you don’t feel comfortable and needs more rest. Get ready for this. Have as much right nutrition as you can and ask as much questions from your doctor and fellow fighters who have been through what you will be going through. In any case, even the average person falls sick on certain days. It just simply means that you have to learn to adapt to some changes into your life. Addressing cancer may be a difficult issue, because even if you choose to ignore it, it is still there and it still changes things. But at the same time, it also doesn’t change things. It’s hard to explain. Most survivors would still be the same person as they were in many ways, but at the same time also not. They may appear different, feel different and think a little different. But then again, even if for someone without cancer, he would also probably look, feel and think differently after a few years as well. The first thing that you have to do is to get yourself as educated as possible on your situation. I know that with the prognosis, it can be quite hard to get your thoughts clear, but you got to make an informed course of decision to see how you can get yourself treated with the best possible options. Life gains a certain urgency when you have cancer but it will focus your mind on what’s really important in your life. There are a lot of things you can learn from having cancer. It’s kind of bad that we have to have a disease like this to learn so much. We would have wished that we could have learned the things we know now without having to go through it. But that is part and parcel of life. Everyone knows that you never know how many tomorrows you have left. But it changes you somehow when you are actually being told that you have something that you can die from. It changes the way you look at things. It changes the way you approach things. It changes the way you feel about everything. But those are not bad changes. Cancer is not good, but sometimes the things that evolve from it can be very positive. Having that realization would make us reevaluate and prioritize the things that are really important to us. Whenever events or specials occasions have been planned for, go ahead and realize it. Don’t put off vacations or any other time with your family if you would like to. Being a cancer warrior gives you something that the average person doesn’t have. You learn to value and love life more. You appreciate friends and family more. It helped you to not sweat about the small stuff anymore, which the average person can be so miserable about. You will have a greater understanding of what it means to be alive and to appreciate the suffering that other patients have been going thru. And when you finally come to the point whereby you can proudly say that you have been through something really horrible and you overcome it, you might want to spread the light. There are two ways to spread the light: to be the candle or the mirror that reflects it. Be a source of inspiration to other warriors. Everyone who got to where he is had to start from where he was. Now that you have come a long way to learn how to manage cancer, you might want to guide others and bring them through this the way that others have done so for you. Share your experiences to fellow warriors who might need your knowledge on certain issues that comes along. Alternatively, simply introduce fellow warriors to people whom you know can be of great help to them. Every small act that you do will be critical to their recovery phase. Nevertheless, uncertainty is an issue that you will have to learn how to grapple with. It can cause a lot of frustration and anger. That is normal. You might be wondering if you are going to live to an old age. But then again, think about it. Even if you have not been diagnosed with cancer, there is also no guarantee that you would live to an old age. Life itself simply has too many uncertainties and cancer is just one of them that are made known to you for now. There are people out there unaware of the illness that’s within them, but are still living lives to the fullest. The same should go for us. It is those people that live with the false sense of illusion that they are going to live forever, that are going to have a lot of regrets in their life. One day, you life will flash before your eyes. Make sure it’s worth watching. Humans have a strength that cannot be measured. This is Keith Ng. By reading this, you are the resistance. The future has not been written. There is no fate but what we make for ourselves. Never stop fighting. The battle has just begun.

 Leap of Faith

Live Strong,

Keith Ng Zhi Wei

www.therulesofwealth.wordpress.com