How time flies...

I would say, how times flies when you're having fun, but that would be a bit of a stretch.  Yes there have been fun times, but like everything else in life the not so great stuff has a way of reminding me that I never know what's coming next.  It has been more than 5 months since I last posted and yet again it seems that a lifetime has happened in that amount of time. 

When all of this started with Mike, writing on this blog was an enormous relief for me.  I had support from friends and family, but unless your husband is diagnosed with cancer and then with a heriditary genetic reason for getting cancer in the first place I don't think anyone can truly understand.  They can empathize and love you and support you, but can only imagine what it must be like.

The Friday of Labor Day weekend, my Mom was in ICU in a drug induced coma on a ventilator & feeding tube only three weeks after we had all been together in San Diego for a family vacation.  After a week of practically living at the hospital with her, my family made the selfless decision to take her off of life support.  Mom died on September 9, 2011.  I wonder why I didn't turn to the blog then like I did with Mike's diagnosis?  Maybe it was because I was surrounded by family and we were all going through the same thing together.  My brother lost his mom, my dad lost his wife of 41 years.  We all shared similar versions of the same grief and disbelief.  It could be that I just wasn't ready to share my grief with the entire world (or whatever small percentage of people I don't know that actually read this blog).

A couple of weeks after Mom died, Mike & I met with a Colorectal surgeon to discuss the pros and cons of having Mike's entire colon removed.  The surgeon's initial reaction was a very cautious "I think that's a pretty extreme way to go".  However, he did admit that Mike's case was a bit extraordinary and he wanted to discuss it with a board of his peers who are also experts in the area of colorectal surgery, colon cancer & genetics.  Several weeks later, much to our surprise, Dr Heise called to schedule surgery. 

With Lynch Syndrome Mike already has an ongoing 80% chance of getting colon cancer.  The main concern, however, is the polyp that was removed at the time of Mike's initial diagnosis.  The polyp had a very similar makeup as the primary tumor (very aggressive, high instability, etc) and was removed by traditional snaring of the polyp.  The concern is that cancer will occur in that spot, but will grow outside of the colon rather than to the interior thereby making a colonoscopy useless in detecting it.  Because it has already been almost a year and a half since it was removed, the team did not want to wait any longer than necessary to remove the rest of Mike's colon.

So, now the countdown to CR-day (colon removal).  The procedure is a subtotal colectomy with ileoanal pouch (j-pouch).  Basically the surgeon will make a resevoir (pouch) with the end of the small intestine and attach it to the rectum, which means no bag.  This will be a more indepth surgery than the first one and recovery will take longer as well.  It could be 6 months to a year for Mike's body to adjust to a new normal routine.  For a guy who works outdoors this could get interesting. 

At least we now have a "2nd bathroom" at home.  OK, that's a HUGE stretch.  What we have is a 5-gallon bucket in the basement with a toilet seat attached to it.  Fortunately the kids are still young enough to think it's a pretty cool set-up.  Yep, the fun never ends around here.

January 24, 2011

Finally feeling a bit more normal again after the Lynch confirmation last week.  One thing I've noticed is that I have a definite pattern with all of this.  The first couple of days are really rough, feeling kind of numb and looking for the nearest rock to crawl under.  Then by day 3 or 4 more rational thinking comes back a bit and I start gathering more information about what exactly we're facing.  By day 7 I feel like I have mostly adjusted to yet another new normal.


That isn't to say I don't still have moments when I just want it to all go away.  It's easy to fall into that spiral of not wanting to accept any of it.  If I kick and scream long enough it will all go away.  But, like I tell my daughter, "has that EVER worked for you?"


Mike and I continue to absorb all we can from whatever resources we can find about Lynch Syndrome.  All of it at this point comes from information we find on-line.  I haven't read so many scientific journal articles since I was in grad school!  We grab onto the positive stuff we find, like a person with colon cancer caused by Lynch has a higher survival rate than a colon cancer not caused by Lynch.  


Actually, I don't think I'm so much afraid of cancer taking over Mike's body (well, I feel that way today, anyway).  It's the uncertainty and all of the unanswered questions that gets to me.  Colon cancer caused by Lynch Syndrome is also known as Hereditary Nonpolyposis Colon Cancer (HNPCC).  The nonpolyposis (no-polyps) means that cancer can just start on its own.  In the majority of non-Lynch colon cancers it starts with a polyp, which can be removed before they cause problems.  With HNPCC there isn't always the "luxury" of having a polyp.  Just *BAM* there's cancer.


So, we continue to gather information, make up our list of questions and wait for the final results of the genetic testing so we can move on to the next stage of this adventure.