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Good news and Worse news

BigMike's picture
BigMike
Posts: 17
Joined: Oct 2013

Hey everyone, Happy New Year!

I recently got test results back from my 9 months after my resection and 3 months since my ileostomy reversal.  The good news is after an MRI and a CT scan there is no evidenceof any cancer in my liver or colon.  I have pretty much gotten back to normal and feel beyond lucky and gratefull. I missed the entire year of 2013 down with stage 4 and chemo and surgery after surgery.  I was really looking forward to showing off my scars on the beach this summer, I mean REALLY LOOKING FORWARD to it... Newyears eve I went home with a fever and chills all night.  The CT scan I just had shows a tiny pinhole leak from where the surgeon connected my plumbing back together, so it looks like I'm headed back in for another ileostomy.  I'm feeling pretty down right now but also glad the cancer is not my problem currently.  I feel like I had my house destryed in a tornado and lived in the crappiest apartment you can imagine in the worst neighborhood while my new house was being rebuilt, and I JUST moved back in to my wonderfull new house with my family and BLAMMO!  Another tornado ripped right through the middle of the livingroom.

I know I'm still lucky, but I'm having trouble feeling gratefull right now and I'm just venting because I can dammit!

Trubrit's picture
Trubrit
Posts: 1627
Joined: Jan 2013

We're here to listen and to sympathize and to comfort.

Any set back is disheartening, even if its not the cancer, its all part of the probelm.

I will pray that your surgeon's hands be guided as he repairs the damage, and that all will be well.

I bet they go through the same incicion, therefore no extra scar to display on the beach.

Be sure and let us know when your surgery is, as we'll be with you in thought.

 

annalexandria's picture
annalexandria
Posts: 2296
Joined: Oct 2011

For me the cancer experience can pretty much be summed in the words of Gilda Radner..."It's always something" (possibly this SNL reference makes it obvious that I am old).

It is important to maintain our sense of gratitude, imo, but it's also ok to acknowledge that the ongoing health issues related to our treatment can really suck.

I hope this "tornado" passes quickly and leaves you with sun and blue skies for a long time.

AA

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

Feeling badly that you have to endure yet another procedure is understandably discouraging even though you are having treatment success. This is a good place to voice your frustration and concerns as so many people here can truly understand the setbacks.

I do think though that you still have time to heal and hit the beach with some scars to show off on the beach this summer. Wink

Peace. ~ Cynthia

 

UncleBuddy
Posts: 687
Joined: Aug 2013

I'm sorry to hear that! But I'm glad you are NED. That is awesome! Vent away! You have the right!

Lin

mdm2
Posts: 17
Joined: Dec 2013

Congrats on the NED. What a bummer of yet another surgery. But there is a bright side it's only January and u will be back up and at em for beach season. 

Cathleen Mary
Posts: 624
Joined: May 2011

Mike,  sorry, you have more to deal with than you expected; it interferes with your enjoying being cancer free.   Soooooo happy you are NED....that is really terrific. 

Your experience pretty much sums up the cancer journey...as Ann says.."it is always something". 

This, too, will pass and you can show off your scars.

CM

katz2402
Posts: 13
Joined: Dec 2013

You are so damn lucky and I am so happy for you. I hope u had quite a party...I thank the Lord that someone out there can be happy that there is no trace of the horrible C demon

Holdtight's picture
Holdtight
Posts: 138
Joined: Aug 2009

CONGRATULATIONS ON BEING NED.  I KNOW THOSE NASTY STORMS MYSELF UNFORTUNATELY ITS PART OF THE HAND WE'VE BEEN DEALT.  WITH EACH NEW PART OF THIS JOURNEY WE CAN ONLY BECOME STRONGER.  YOU HAVE A GREAT ATTITUDE MIKE AND THAT'S THE BIGGIE.  STAY HAPPY AND LET IT GO.  DON'T WASTE ANY OF YOUR TIME.  WHEN YOU FEEL GOOD MAKE PLANS - GO OUT, MEET PEOPLE, MINGLE - EAT GOOD FOOD THAT GIVES YOU ENERGY AND STAY HYDRATED.  WATER IS THE KEY TO HEALING.  JUST DO IT.  SHOW THEM SCARS - LOL -  I HAVE DONE MORE, MET SOME VERY SPECIAL PEOPLE AND WOULDN'T TRADE IT, IVE EVEN GREW TO LEARN HOW TO PRAY -  YOU CAN'T LET IT GET A GRIP BECAUSE THAT'S WHAT IT WANTS TO DO.   BEST TO YOU MY FRIEND.  STAY IN TOUCH - THE PEOPLE ON HERE ON THE BEST YOU CAN FIND.    LET THE SUN SHINE ON IN.

BigMike's picture
BigMike
Posts: 17
Joined: Oct 2013

Thanks for the support and letting me vent. This is really a special place with great people sharing a similar experience and we are all very lucky to have it. I try not to talk about this stuff to other "normal" people because I find they really have no idea where I'm coming from or how to react to what I'm saying.  I've found myself explaining my situation to people who seem sincerley interested and before I'm more than a few sentences deep I can see their eyes glossing over with that familiar look of "I'm hearing you, but I'm not really understanding you" ...so I am truly thankful to be able to talk with everyone here.

On Thursday morning I went in for a flex/sig where a new Dr. that my colorectal surgeon referred me to put a clamp that resembled a small beartrap or hairclip on the leak site.  Has anyone here heard of this before?  Before the procedure the Dr. said this may or may not work, there apparently is not a lot of information on how well this will work but if it saves me from another couple surgeries I guess it's worth a try.  After the procedure the Dr. appeared to be confident the leak site was closed by the clamp but we'll have to wait and see. Probably another CT scan in a month or three unless I continue to get fevers in which case I'll probably have no choice but to get the Ileostomy surgery again.  I sure hope it works but I can't help thinking it might just be a bandaid that ends up just delaying the inevitable, but I'm keeping my fingers crossed :)

Apparently the hole was 8mm!  That seems like a big hole, I'm not sure if this is commen with in bowel resection surgeries or if its possible the surgeon just didn't do a tip-top job. Oh well, it is what it is.

Gavin63
Posts: 98
Joined: Aug 2013

Hello Big Mike,

Congrats for being NED, the most soothing word that I would like to hear ever since I was diagnosed with CRC. Good Luck on your clamping. Shall pray that all will go well for you.

Gavin

RickMurtagh's picture
RickMurtagh
Posts: 538
Joined: Feb 2010

I am glad they found it - the leak that is. I also had a leak, which caused a chronic infection that looked like sacral cancer. Fortunately it was not cancer. The takedown was not working anyway. Two years of misery. Now I have a permanent ileo, better than what I had and still not half bad. The new me - pooping in a bag. Did I mention I saw the addition of five grandchildren through it all?  

Peace

rick

RobinKaye
Posts: 93
Joined: Nov 2011

A larger hole often will heal when a tiny pin head size hole won't.  

My husband had the Bear Claw done about 4 weeks ago. The IR doc was going to glue it as well last week but the fistula was healed 

so no way to get to the hole.  Since 2/12 he has had the drain 5 times, only without the drain for about 5 months during that time. 

He even reversed his reversal and got a colostomy in hopes that would put an end to the probem but three months later it started again. 

Any way, hoping this works but he's had a fever off an on the last few days and that look again...I have always, even without a 

fever, have been able to sense that another infection was brewing.  His hole is on the rectal stump, began as an anastomic leak, 

never healed resulting in a fistula. If the infection is back his only option will be surgery to remove everything below the colostomy. 

I hope the bear claw works and I'm just making mountains out of molehills. Keep us posted how it works for you.  This is a new 

technique, my husband was the doctors second procedure, the first one he did worked like a charm. 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Big Mike,

I don't blame you for being frustrated.  This is just another setback.  This might sound like a cliche but we have to go down before we can get back up so I know there's a silver lining waiting for you.  Praying for your successful surgery.

Cynthia

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