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1 year anniversary

BobHaze's picture
BobHaze
Posts: 155
Joined: Sep 2011

Hi everyone:

I may be bragging or maybe I'm just incredulous and relieved, but today marks 1 year since my surgery, and I can hardly believe it! I won’t have my 1 year scan and follow-up with the surgeon for another couple of weeks, but from what he said at my 6 month appointment and how I feel now, I’m doing well, Thank God.

It’s been an emotional year, of course, for a variety of reasons. At my very first appointment, when he was just going over my diagnostic tests and making his initial recommendations to us, Dr. Morse told me that doctors are rarely comfortable using the word “cured” for cancer patients, but he was confident that after my surgery “you’ll be as close to cured as anyone can be.” Pretty much exactly what I was hoping to hear, so I liked the guy right off the bat! lol But that was also when the roller coaster ride started, as I was up after that appointment, then nervous/scared whenever I thought about the surgery itself, then up again thinking about being recovered, then nervous thinking about the path reports, etc.

And now, 1 year later, I feel pretty good and am doing pretty much everything I did before the beast invaded my life, but still I’ve found that it’s pretty much impossible to forget that I have cancer. It doesn’t scare me the same way it did at first, and according to all the docs who are taking care of me I may well prove to be cured. But that’s easy for them to say, and they’re not the ones worrying about that stray cancer cell that may have been missed and right now might be lurking somewhere. I don’t dwell on it, but it’s there somewhere in the back of my mind pretty much all the time, and I think cancer has an emotional component that is largely understated in what we read and may only really be understood by us who have the disease.

Here’s where I am physically now, 1 year later:
- I eat almost everything I used to eat, but of course less at a sitting and several more times a day.
- I’m about 30 pounds lighter than when I started this journey (I’m 62 and 6’-0”, 167 lbs.) and creeping back up to my goal of 172. Maintaining, never mind gaining, weight is more work than I might have guessed, but it’s working out OK.
- Along with dietary considerations come – er – digestive issues, and Imodium is always close at hand. I don’t need it every day, but at least a couple of times a week or I have problems.
- I’m active, I ride my Harley a lot, I go sailing and fishing, and last summer I trained for and completed a 192 mile, 2 day bicycle ride in a major fundraiser for cancer research (the Pan Mass Challenge (www.pmc.org)).
- I travel around the country for work, which includes going up gangways and/or rope ladders onto ships to conduct inspections and training, which hasn’t been a problem.
- I don’t sleep any way near as well as I used to: unless I take a Unisom or an Ambien I don’t think I’ve slept through a solid night yet. Sleep now pretty much comes in 2-4 hour increments.
- I have an area of alternating numbness and sensitivity in my right front ribcage, which my surgeon says is probably the result of nerve damage during the surgery. It’s not really painful and I notice it less now than before, but it’s always there and is weird. The doctors all say not to worry about it, so I don’t.
- I have no idea why except that it must be related to learning that I have cancer, but I’ve become weepy at odd times. I can be watching TV or a movie, and things that are either very sad or even about something wonderful in the human spirit can cause me to start tearing up or just plain weeping. I consulted a social worker at our local cancer center about it a couple of months after my surgery, when it was much more frequent and was really bugging me, and he said it was because I was grieving. “Grieving for what,” I asked, since I was probably going to be OK, and he said I was grieving for my old life. I think he was on to something, but I feel like a dope about it when I read some of the posts here, and especially after meeting Don Reed less than a week before his passing. What the hell do I have to cry about? I don’t know, but there it is.

Speaking of poor Don Reed, let me say that it was an honor to meet that great guy, and to see what a wonderful family and wonderful, caring friends he was fortunate to have. He was failing by the time I met him and he was under no delusions about what was happening to him, yet he did his best to express his appreciation for my coming to visit, and to contribute to conversations as best he could. As close as many of us become on these online forums, Don was the first EC patient I’ve met in person, and it was a moving and positive experience for me. The thought that I might have brought him even a little happiness during the worst time of his life gives me a great sense of warmth (and more tears!). Judy introduced me to their CBG friends as a guy who had the same cancer as Don, and they were really curious about that, which gave me the opportunity to talk about EC, reflux, and the importance of getting scoped. And I keep thinking that if just one of them takes the message to heart, it lends some meaning to Don’s suffering and makes my little trip that much more important. But I think that what I got most of all from meeting Don is that I now take my recovery and my incredibly good luck (lucky to have cancer? WTF?!?) even more seriously than I did before. I told Judy and the CBG’s that I didn’t understand exactly why the ride out to Michigan on the bike (875 miles in 2 days, each way) was so important to me – but it was – and Judy suggested that it may be exactly that: to show me how fortunate I am, to make me take my recovery more seriously, and to reinforce the importance of spreading the word about EC and preventative measures, to maybe help others not have to go through what we did.

So that’s where I am at now. I wish I wasn’t here talking about something I hadn’t even heard of a little over a year ago, but here we are and I know and appreciate that I’m doing pretty damn well, all things considered. I try not to be a pain in the ass about it, but I take every opportunity that comes up to encourage people to talk to their doctors about indigestion, and especially about reflux, and to insist on having an endoscope at some point, exactly like they have a routine colonoscopy at age 50 or whenever. I plan to be a good patient and to be here every year celebrating another anniversary. I don’t pray, exactly, but I think about everyone on these boards a lot and I try to send positive energy their way. This is a wonderful community we have - despite the spiteful Greta - and I feel blessed that my wife found it the day after my diagnosis. God bless us, every one!

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

bingbing2009
Posts: 179
Joined: Feb 2011

First, let me say congratulations on your 1 year anniversary. That is wonderful news.

Most of all, I wanted to thank you for sharing so openly and honestly. You are one of the few that I've read about who has sleeping issues. I, too, have sleeping issues since my surgery, rarely getting over 5 hours a night, and even those 5 hours (IF I'm lucky enough to get that many) are full of restless sleep. The only way I can get a good night's sleep is to take an Ambien, and I do that once a week on Saturday. Even then I only get about 6 hours of sleep, but it's a more restful sleep. I was once told I now have PTSD from the cancer/surgery. I truly was traumatized, especially when a nurse almost OD'ed me with the morphine drip on my first night out of the ICU. When there was a frightened husband and a team of doctors and nurses and therapists standing over me, yelling and injecting me with various drugs, trying to wake me up, to save my life, actually...well, all I can say is that it was a nightmare to resurface in that environment. After that experience, I refused to use my pain pump and was in horrible pain. That would traumatize anyone!

Also, I'm more emotional than I used to be. When I feel a need to cry, it's going to happen no matter where I am or who I'm with. I actually lost it at work Friday, and that's not good when you're a teacher. I hadn't had much sleep Thursday night and didn't feel my best Friday. So crying jag, here I came!

I guess my point is that it is so good to know there is at least one other person who has experienced some of what I go through. I can't thank you enough for being so candid. I certainly hope things continue to go well for you.

I am also thankful and feel very fortunate, and frequently think of Don Reed. I'm happy you had the opportunity to meet him and Judy.

Wishing you the best,
Melinda

DX October 2009: T3N1M0
November and December 2009: chemo (Cisplatin and 5 FU) and radiation
February 2010: Ivor Lewis surgery

BobHaze's picture
BobHaze
Posts: 155
Joined: Sep 2011

Hi Melinda, and thanks for the kind reply. I have a suggestion for the sleep issue: I get as much sleep as I can, then I take half an ambien if/when I wake up around 2:00 or 3:00, which gives me another 2-3 hours of sleep. That way the cummulative hours of sleep are more than if I had taken the ambien before bed. That's what works for me - it may or may not be for you.

Bob

BMGky
Posts: 666
Joined: May 2010

Looking forward to hearing about your second year anniversary. Glad you are doing so well.

Caregivers and patients alike are so humble to have had a chance to have the surgery and realize how thankful we should be and are.

BMGky

paul61's picture
paul61
Posts: 1092
Joined: Apr 2010

Bob,

Congratulations on your one year anniversary!! I think we are very similar in where we are physically and mentally. Like you, cancer is never far from my mind. I try to live in the current moment and not think about it, but occasionally, particularly when I have a day when I have a new unexplained pain, or a day when I am not feeling well, that "I hope this is not cancer coming back" thought occurs.

It seems like every time I think I am past the dumping syndrome issue and have not had any problems in a long time I get a surprise. But I have learned to live with that and move on without dwelling on it.

I think all cancer survivors are more emotional that they were prior to being diagnosed. We now understand how valuable some of the things we used to take for granted are.

I am now almost three years out from surgery and it still have numbness and occasional twinges of pain in my right chest area. The last time I talked to my surgeon about it she said it probably will not be going away. On the other hand I am an avid golfer and it does not hurt at all when I swing a golf club so I will settle for that. And I now have a built in excuse for my lousy golf game so all in all not so bad.

It is great to hear that you are doing well.

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Bob,
Congrats on the 1st anniversary. Every anniversary is special whether it is 3 months or 3 yrs or more or less. Happy for you, you sound like you are doing so good. Wish there were more success stories for everyone. Sorry to hear about sleep pxs for you and you too Melinda!!! I am on Gabapentin for cramps and I take that and some pediatric benedryl liquid and that usually helps me sleep, but guess different things work for everyone. How lucky are all of us that can write these encouraging words to our newbies and those struggling before and after surgery. I am so glad you got to meet Don, Bob. It was great to see the pic of all of you together. How much so many of us wished him a better outcome. so as someone else said, hope to see you writing about your next anniversary. good luck, take care,
Donna70

preacherchad's picture
preacherchad
Posts: 62
Joined: Dec 2010

Bob, congrats on your one year anniversary. We will continue to lift you up in prayer!! You are blessed to have found this site and so many that care and want to give back in the way of helping others cope with this terrible diesease.

GerryS's picture
GerryS
Posts: 237
Joined: Aug 2010

I too wish too add my congrats. Your letter was so candid and I related to most everything except riding a motorcycle (which I haven't done since I was 20!) I too was traveling thru Michigan and had breakfast with Paul61. Its great to meet a fellow EC survivor esspecially when you have similar experiences. We are an exclusive community and I think we all lean on each other on this journey.

Gerry

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Bob, Congratulations! We do appreciate all the anniversary dates and love being told, so we can celebrate also.

I've always been emotional, but I believe I cry easier now. I think it is related to realizing how precious life is. Each day holds so much more meaning to me now.

I can't relate to problems sleeping. I can sleep anytime, anywhere.

Keep sending the positive vibes! I have a barium swallow and xray this wed. Just routine, but I'll feel better about it when the doctor says all is well.

Yes, this is a wonderful community! I'm still hoping for the ban to be lifted ,so the other members, will be allowed back.

Sandra

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

Have to agree with everyone else. Congratulations are definitely in order, and I'm happy for you and Don and Judy (and Caitlin) that you had a chance to meet them before Don passed. I'm just the tiniest bit jealous of you because of your status. They caught the beast early enough that surgery was possible, and we now expect updates and comments from you over the next 10 or more years as we do from Paul and William.

As to the weepies... Yah, me too. Some times for no particular reason at all. Keep up the good work, and the good life, and help educate the rest of the world.

Your fellow conspirator again the evil that is EC,

--Jerry
T4N2M1 DX Oct 11, 2011

ShellyAS
Posts: 24
Joined: May 2012

It is great to hear how far you have come. My husband was diagnosed with T1b and had his esophagectomy at the end of May. He also mentions pain/discomfort and sometimes numbness on his right side.

Knowing how aggressive this cancer is, it is good to hear about your recovery.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

I'm SO GLAD for you. Every win against EC is a win for us all. Keep your anniversaries coming. We need that good news here.

FEC!

Terry
PROUD wife to Nick, age 49
lost battle to FEC, June 19, 2012

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