worst case scenario comes true.

[cynnycal]

Alright, so the worst case scenario has been confirmed.
i just got back from being put under anesthesia and having a rectal ultrasound. i finished radiation, and now he was looking for how low in the rectum the tumor is and how close to the sphincter muscle it is.
he says, if you look at your index finger, that first "line" on your finger, down from the tip, that's about how far away it is from the sphincter, and he feels like it is integrating into the sphincter.
he says whole colon, rectum and anus has to come out.
he gave me two names for a second opinion.
he says that he believes, after radiation, the tumor is still there. smaller, but there. Although he says ijt could also be scar tissue from the radiation, but he said he wouldn't want to risk that it isn't still cancer.
he said he could biopsy it, but even if he biopsied one part, and it was negative for cancer, it doesn't mean another part of it isnt. and he wouldn't want to risk that it was.
he said i would have a perm. ileostomy. I am not a candidate for a J-Pouch. (and i have FAP, so that is why the whole colon MUST come out.)
the thing that i don't like (well...there are MANY things i don't like about this. but well...whattdya gonna do)
but one of the things i don't like. is the fact of removing it all together. i mean. that's it. no going back.
it's like "lets amputate your arm, b/c we think it won't work, and we dont' want to take the risk that it won't ever"
i mean, the permanancy of it is horrendous to me.
i didn't ask any questions. i just kinda sat there. i mean...he wasn't really giving me any OPTIONS for anything else. so what could i ask?

i have an appt. this wednesday with another doc, and then i have to call the other one to make an appt. My guy, and the two other surgeons are like...the top three in chicago.
i kinda don't see the point of going to see another doctor, although i will, and everyone says i should. but for what? they're going to read my doc's notes, and i'm sure be teh same way.
soooo.....as is my luck. it is possibly the worst year of my life. i just keep banging em out, one bad thing after another.
my mom asked me "so...not great news...did you already kinda have a feeling?" and i answered "well, this is keeping in theme with my luck so far. why not."

[Molly]

Hey Cynn-

You should aboslutely get a second opinion, and if you don't like the 2 options your doc gave you, look for another choice on your own...and one who has done zillions of these.

I will never say that your doc isn't good, but the turth is, there may be someone out there who can look at your case and give you another option...like possibly only removing the tumor, for example. Your doc may completely rock, but my guess is that (just like mine) he hasn't seen it all. If you can go to someone who has had a lot of experience (and succesfful experience at that), you're more likely to have more options.

...and in the end, if nothing else, you get to harass more docs.

[cynnycal]

well. unfortunately, my doc pretty much HAS seen it all. He's almost number one for j-pouches, colorectal cancer, etc. in Chicago (and elsewhere, as I already have spoken to a top colorectal surgeon from MD Anderson in Houston, who, after finding out I was seeing Dr. Saclarides said "oh, Dr. Sac? you're in pretty much the best hands." )
( his bio/profile: http://www.usurg.com/profiles/DrSaclarides.htm )

but i will see the other doctors too. i just don't hold out much hope of anything.
someone told me today to ask about Koch pouches and artificial sphincters.
i just dont' know.

it makes me feel like all this bullshit i went through is for nothing. i don't want to live like this. and now i feel like i spent the whole summer buildign up to an amazing disappointment.
fuckin chemo poster-child. and for what? shit.

[Holly]

Text removed 8/4/06. hpr

[cynnycal]

i go back and forth.
i would like someone to acknowledge to me that is is normal to NOT feel just thankful to still be alive.
i'm not gonna go throw myself off the roof. but you know...sometimes you aren't thankful to be alive. b/c the life that you're allowed to live isn't at all what you ever wanted (and in much larger ways than just "i didn't get that dream job i wanted, kinda ways)

i know i should focus that i'm still here. And honestly, right now, at this very moment in time...aside from having a rectal probe stuck up me hours ago, and feeling anally raped, i'm not in a huge amount of pain. but i'm just tired. so so so so so tired. the stress of it is unimaginable. i have a pretty strong fortitude. i usually have a great sense of humor. but day after day, time after time, to continually keep getting handed a raw deal, over and over and over.
once...just ONCE i'd like to catch a break here.
had my car stolen, day after i had the colonoscopy that told me i had FAP, next i find the FAP turned cancerous. Next i find the cancer was stage 3, next i find that my COBRA insurance was pretty much crap. next my port site won't coopoerate with me and won't heal up. i literally have an open wound revealing the port. i can SEE it. then i'm told that on top of all the side effects from chemo and radiation, i'll be menopausal at 25. THEN i get to have my tubes cut and no chance of kids. then i get kicked outta the apartment i've lived in for the past five years at a time when i have NO money, and was days away from meeting my surgeon to decide this. now my surgeon tells me what i've decided i want MOST out of all this....after putting up with explosive diarrhrea, seared and burned vagina and anus, constipation, anal fissures, fistula's, hemmorroids, hair loss, skin discoloration, bloody noses, weight loss, etc. After AAALLLL that, the one thing i wanted to happen. the one thing i prayed for, meditated for, visualized for...won't happen.
it's what kept me going through all of this that eventually...soon, this will be behind me, and i can get a somewhat normal life back. the thought of that goal was what kept me relatively upbeat, and happy.

so it's not that i want to ignore what you say. and it's not that i dont' know that there's truth in it. i just am way too overwhelmed, way too exhausted, way too bitter, way too angry, and way too defeated to really be too positive.


thank you for your genuine concern holly. i don't mean to offend. but i'm sure you can also relate to some of the feelings i'm having. and being that i just found this out this afternoon. i'm still reeling and finding it hard to be diplomatic.

i'll be back. with my warped sense of humor i'm sure. but now i guess i'll go lick my wounds yet once more. i'm really getting tired of the taste of them by now.

b

[Molly]

Hey Again, Cynn-

The good news is, you aren't alone with the rectal probing on this board. ...but you already knew that.

First things first...you're in good hands and that's a good start, especailly if you really like your doc. I still think the second opinion (and even third) is a good way to go though. Hey...you never know, right? Maybe...just maybe...one of them is willing to try something else.

Cynn, I had no idea all the things you've been through...and for Pete's Sakes, this is the first time I've heard about your car too. But here's the deal. You're going to get through it...and a lot of it's going to suck...but you'll get through it because you HAVE to.

I've read all of your posts over the past few months...and you nail every single one as far as showing your feelings and getting your point across. You are funny and happy and sad and scared...but most of all you're honest. One post you put up that really struck me is the one about how people often have good intentions, but... It made me think of my friend Rocky (who would probably kill me if he knew I was mentioning him here). When I was first diagnosed, just like a lot of other people, certain friends stopped talking to me. Others only wanted to talk about their hockey teams, and one in particular called and actually said, "Molly, I heard you have cancer and that you're going to DIE." (I've since adopted the phrase, "Stupid people shouldn't breed." He's an ass anyway.)

In any case, Rocky somehow always knew just what to say...and I'm gonna force-feed that stuff on you now. When I first told him I had cancer, he said, "That sucks...but you'll get through it becase you're you."

When I told him I was so tired...so freaking tired that my eyes hurt and my body hurt and I just wanted to stay in bed for days...but so tired that I honestly couldn't fall asleep, he said, "Hey Molly, at least you didn't wake up this morning, look in the mirror and have to say - Aw Crap, you again?" (No matter how pissed I was, that one always made me laugh." Then he would tell me that was the time to go and work out, when I was most tired. (HAHA! I never once took him up on that one!)

...and when I cried to him on the phone about my cancer, he said something along the lines of, "Molly, there's always someone going through worse." Rock reminded me that there were a lot of people out there who had it worse off than I did and he wouldn't let me feel sorry for myself (which sucked a lot of the time). But in the end, his tough love (if I can call it love...actually I think he just liked to torture me has stuck with me. He made me know that I would get through it...because I had to...period. That's just the way it goes. The road completely sucked ass at times...and other times, it was kinda rosy. But he wasn't going to let me forget that I was going to get through it one way or the other...just like none of us are going to let you forget.

So...get your warped sense of humor back here ASAP, because your honesty has inspired and touched more people than probably anyone on this board. ...and if you're tired...sleep! Your body is telling you that's what you need, and beside, when are you EVER going to have this excuse to lay around guilt-free again?

[rthornton]

I totally understand all the frustration you feel, at least to some degree. I mean, my experiences are not your experiences, but it can all certainly be overwhelming. After spending last year having my colon removed, getting intensive chemotherapy, suffering from anal fissures (which are hell combined with 5FU), etc, etc, etc, and finally remission, I thought it might all be in my past, then I find out a couple of days ago there's recurrence. New cancer in my liver, so it all starts over beginning next week! I think you have every right to be angry, sad, whatever you want to be. Of course it's important not to stay that way, but trust me ... you're not crazy for not being in love with life right now. You're only expressing what many people feel, and it's good to be honest about things rather than covering it all up with happy talk. I mean, you can only address such feelings if you acknowledge them, right? I know you're feeling down today, but I hope you'll come back stronger than ever, ready to do whatever has to be done.

And when you're feeling better, you can find the person that stole your car.

Rodney


(oh, and you are absolutely not crazy for hating anal probes)

[mca]

Hi Cynnycal,

I know that you're frustrated, angry and disappointed. It's OK to feel that way for everything that you've been through. It's a good thing that you're letting out your real feelings and be honest with yourself. I mean we all need to find ways to release our stress during these battles with cancers. But, please try not to let these feelings consume you and make you lose your focus.
I agreed with Molly 100%, that you HAVE TO hang in there and get through all this. You are a strong, smart and wonderful person and YOU WILL get through all this crap and come out ahead of the game. I mean, it's so easy to lose hope and think that there's never an end to this string of bad luck. But, you'll come around, you'll see.
Although I didn't have the same experiences as you, I was feeling almost the same way a little while ago. Last December I flew to Asia for my very best friend's wedding. I was supposed to be her maid of honor (she was mine 11 years ago). Then, the string of bad luck started. Three days after I got there my mom found out she had a tumor in her colon that need to be removed through surgery. A week later my grandmother (who was in perfect health) died suddenly and I was so exhausted after her funeral. Then, at the end of December my mom went into surgery and I extended my visit in Asia for a month to take care of her but ended up not being able to attend my best friend's wedding at all. I was so tired when I returned to the US and thought that I can finally get a break after all these. A few months later, I was diagnosed with colon cancer, had resection of a portion of my colon and will be starting chemo on Aug 9. Now, since I did my surgery while I was in Asia, my insurance won't pay a dime for all the costs I incurred there, even though I didn't know I have cancer until I went overseas to take care of some family matters. There goes a big chunk of my savings. There are times I feel like I want to give up and hide in a closet so no one can bother me. I just want to be alone and not think about this at all. Then, I thought about everyone who loves me and is trying their very best to support me. So, I pick myself back up and try to think about all the things that's still good in my life, you know, family, friends, etc. Don't get me wrong. I'm not trying to discount your feelings. I just want to share with you what I've been through so that you know you're not alone and someone can understand you to a certain degree. All our experiences here are unique but please remember that we are here for you. Just post your thoughts here and we'll try to support you the best way that we could. This is a wonderful club with amazing members like yourself. Let's fight our battles together!!!

Take good care of yourself.

Channie

[Bryan S]

After reading some of Cynnycal posts I know she has picked the right screen name. I feel almost not worthy of responding to you but when I was diagnosed I was into black humor to help me deny the problem. My wife never understood it but she did say "the world isn't done with you yet"

Cynnycal the world isn't done with you yet.

Lord know it likes to play with you.

Keep up your spirits I believe that will keep you going.

You will be in my prayers and I do pray daily.

[Magnolia]

Cyn, I'm on my way out the door, and I can't say all I need to say now, but I will say that it IS normal to feel angry and upset and sad that things aren't going as well as you'd hoped. That's OK!

Second opinions are always a good idea, even if you're pretty sure there will be no disagreement with the first opinion.

Your first priority is staying alive. You can go through all the normal emotional stuff you need to about the rest of it, but never lose sight of that goal.

We're all pulling for you. You are a fighter by nature. That comes through loud and clear. Whatever happens, you WILL be OK.

[northern lights]

It always seems that things are easier for other people. Sometimes I need to hear that my struggles are a normal part of life. I don't want to list the things that have gone wrong in the last year, but it definatley helps me empathize with how you are feeling.

So far all the things that have happened to me, have not broken me. I have cried a thousand rivers, but I keep thinking as long as it is happening to me, and not my kids, I can handle anything.

It's good to read your venting and I hope you find comfort in the fact that everyone reading it really cares.

Reach deep, you still have a lot in you. I am in the military and we have a saying (your black humour may relate) "what doesn't kill you, only makes you stronger!" I fall back on this saying a lot, because I have learned such valuable life lessons from this battle. I know that I am a better person...you can't go through what we have been through without coming out a stronger, more compassionate person.

Sharon

[Edward]

Becca,

I know this isn't much, but i'm on local task force and we are working on enhancing survivorship. Here are some references I know your not in there state, but Penn State may be on the leading edge of new techniques.

cleveland ohio area for sphincter saving approach to rectal cancer would
be the Cleveland Clinic: Surgeons there are Victor Fazio, Jim Church,
Scott Strong, Ian Lavery, Tracy Hull, all excellent surgeons. At Case
Western in Cleveland is Connor Delaney. In private practice, in Mentor
Ohio, close by is Tim Pritchard.



Walter A. Koltun
Chief, Colon and Rectal Surgery
Carlino Chair in IBD
Milton S. Hershey Medical Center
Penn State College of Medicine,
Hershey, PA

[Maggie]

I haven't gone through half the things you've gone through, though I've had my fair share of crap.....to the point things got really bad. I didn't want to be anymore. But all that time, I've always told myself, almost as a mantra, "what doesn't kill me, makes me stronger." My problems began with my cancer, and then just went downhill from there, even after winning that battle with cancer. And I would (and sometimes still do) sit and think of all the bad things that have happened, never once focusing on the few and far between good things that have happened. But really, those few good things are what make me wake up in the morning. I am pretty sure there aren't too many things scarier than life as you know it changing forever. But we adapt....that's what we're made to do. It won't be easy, but we adapt and deal. And you are a very strong soul. I don't know you from Adam, but after reading all your posts, I am certain you are strong enough to get through everything life has handed to you! And if you have a day, or week, whatever, where you feel you can't handle it alone, you have family, friends and THE COLON CLUB to help you along! On some level or another, we've all been there.
PS- in reference to Edward's post, Dr. Fazio at the Cleveland Clinic was my doctor and he was amazing. He's the best in the area.
Maggie

[Angie]

Cynnycal, After reading your story and all that you have been through! It is just crazy what can happen to us and when it is over and you look back and think wow! I can't believe I made it through that! and believe me you will. It might not be easy but you will make it. Life doesn't turn out how we want it to. I believe that there is a greater plan for us. Sometimes I think about myself and feel sorry for myself ( thats OK) and try to find a reason why this has happened to me and I always come back to the same thing, that there is a reason I don't know it yet but I know that there must be one. It might just helping and sharing storied like this. You are a strong, person and you will come through it.

If he brings you to it, he will bring you through it!

Keep on fighting and I will be praying for you to have the courage to meet everyday with strength and courage!
God Bless you!

[Renee]

I read through most of what you had to say, had difficulty reading it all. You are correct in my mind, being alive isn't necessarily all it's cracked up to be. BUT, you still have family and friends and if God wanted you not to be here you would be gone. I can't bear this disease I am a stage IV any more than any of us on here but fighting is the only hope. We have to keep fighting until someone finds an answer to this dreaded disease. Your story touched my heart and although that may not mean much to you, you did help someone else, me. I can only guess that if you helped me you helped others. So, yes your life seems horrid this disease is horrid but you are touching people and helping them be strong. Think of all the people who can never say that.
Good luck, God bless, We ALL have a right to feel "sorry" for ourselves once in a while, we all have gotten dealt a really nasty hand.