The ripple keeps expanding...

What started as dipping my toe in the water has continued to grow, much like the ripple caused by a pebble tossed into a pond.  I knew I wanted to try to bring more awareness to Lynch Syndrome and colon cancer, but wasn't quite sure how to go about doing it.  Through my involvement with Colontown, Chris4Life and the Colon Cancer Alliance the opportunities keep coming.

In March am returning to Washington DC. This time with the Colon Cancer Alliance and Fight Colorectal Cancer to "Call on Congress" about early intervention and screening for colorectal cancer, quality treatment options for patients and funding for research.

As the leading advocacy group, Fight Colorectal Cancer serves as a resource for colorectal cancer patients, grassroots advocates, policy makers, medical professionals and healthcare providers.

For this event I will have two days of advocacy training before spending the third day on the "Hill" visiting the offices of my representatives and senators. At the end of the third day is a celebration/awards dinner and ceremony.

I applied for and was awarded a scholarship through Fight Colorectal Cancer, which will cover my hotel stay and part of my airfare.

Any additional financial contributions made will help to offset various travel expenses (airport parking, baggage fees, transportation in DC, meals, etc.) associated with my advocacy work.             Colorectal Cancer Advocacy 

I do this for my family, but also for the many friends who have beaten colorectal cancer are currently fighting for their lives, are gracefully accepting the end of their life, and for those we now remember with both sadness and a renewed determination to make a difference.

Overachiever

The wait is on now for Mike's bowels to start working.  In less than 5 hours following surgery he walked to the door of his room.  Six hours after that we walked down the hall together.  When the docs and day nurses did their rounds this morning and told him he would need to walk today there was some surprise that he already had.  I guess he's above average, but of course, I already knew that.

I am not the least bit surprised that Mike is determined to get better as quickly as possible.  If moving around more will kick things into gear then that's what he's going to do despite any pain he feels.  As he puts it, "there are sick people here" and he doesn't plan on sticking around any longer than necessary.

Being an hour from home is tricky.  I have two hotel rooms in town for my Dad, Mike's mom and the kids.  With Mike's last surgery I stayed overnight in his room every night, but the room here is so tiny, that although I would be allowed to stay I'm not sure there is actually room for me to sleep unless it's in a folding chair.  Instead I stayed until about 10pm, went to the hotel for a few hours of sleep and returned to the hospital at 5am.  I am quite thankful there is a 24 hour Starbucks between the hotel and hospital!

Today the kids will visit in the morning and then Dad will take Cal back home for a birthday party.  Not sure what the rest of the weekend will look like for them, but it is such a huge help to have Dad and my mother-in-law here to help with the kids.  Just another one of the many things I am grateful for.

I've also thought about my Mom a lot.  Yesterday was three months to the day that she was taken off of life-support.  I've wondered about the concept of having the person that died "with you" or "watching over you".  It sounds good in theory, but I have never really had a tangible feeling of Mom being with me.  I think was expecting something more concrete rather than simply a sense of her being here. Like an obvious shift of some kind that she's making an "appearance".  I've come to the conclusion, at least for me, that Mom being with me is a constant not something that just happens when I face a difficult situation like Mike's surgery.  She's with me when I am relaxed and happy just as much as when I'm anxious or worried.  I guess it's similar to the same sense I have that God is always with me.  I miss Mom and wish so much that she was still physically here, but I'll have to accept on faith that she IS still with me.

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.
  

Reality setting in

Mike has Lynch Syndrome.  

We knew there was a high probability, but to be told with all certainty still kind of knocks the wind out of you a bit.  Although not nearly as much as being told your husband, at age 37, has cancer.  Nothing can compete with that.

Yesterday Mike & I went to Madison so he could have another blood draw.  We had a chance to talk with Laura, the genetic counselor, and she explained why more blood was needed.  

We had originally been told (several months ago) that two of Mike's mismatch repair genes appeared to have mutations (MSH2 & MSH6) we were also told that typically MSH2 will also take out MSH6 so further testing would be done only on MSH2.  The blood taken for that was sent to Quest rather than Mayo where all of the other testing had been done.

The results of that testing done by Quest indicated a result which can often have a false positive.  In order to rule that out the same test was done at Mayo to confirm it.  Instead, Mayo found a DIFFERENT mutation right next to the one Quest found.  At this point either exon 7 is missing or exon 8 is duplicated so BOTH labs will now look for both of those mutations.  The blood draw was needed yesterday because the labs have used up all of Mike's blood from doing the previous tests.  It appears that Mike is very well known around Mayo Clinic now.  Well, his blood and mutations are anyway.

The importance of finding out exactly which mutation is involved isn't so much for Mike, but for the rest of his family and our kids.  Laura said as big of a pain as this all has been, it's actually a good thing Mayo retested for Quests findings.  Had we just gone along with the first result and assumed it was a positive-positive and not have it rechecked we could have ended up having family members being tested for a mutation that never actually existed.  The worst case would have been that genetic testing would be done on family to look for a mutation in exon 7, having everyone's results come back negative only to find out later - after someone else ends up with a Lynch cancer - that the mutation was actually in exon 8.  

Once the two labs run tests again for both exon 7 & exon 8 we will - ideally - know exactly which exon is involved.  From there we send that information to Mike's parents & siblings so if they decide on genetic testing the labs will know exactly what to look for.  A process that should only take a couple of weeks.  Not five months like it has for us.

There are a lot of issues to think about with this diagnosis and it can start to feel overwhelming (that seems to have been a pretty common feeling over these last 7 months).  What can I do to protect my family?  There is a 50% chance that Cal & Zoey also have Lynch, although we won't have them tested until they are much older.  Knowing there could be something in their DNA that makes them more susceptible to certain cancers can be terrifying.

We are fortunate that Mike has already has decent life insurance through the Air Force.  In all reality, a diagnosis of Lynch Syndrome pretty much rules you out for getting any life insurance if you aren't already insured.  We also benefit from a really good health insurance plan through Mike's employer.  We anticipate the rates going up, but at least we're insured.

There is so much more to sort through and think about.  Everything from what we are eating to what doctors Mike should have on his "team".  Is surgery something to seriously consider?  No colon = no colon cancer, but that doesn't do anything for reducing the risk of brain, skin or other Lynch cancers.

I think everyone has been touched by cancer in one way or another, but Lynch Syndrome is this other beast just lurking below the surface.  An estimated 600,000 people have Lynch, yet only about 5% know it.  Now when I hear of someone young being diagnosed with any of the "Lynch cancers", I always wonder if Lynch is responsible.

Sometimes it's hard to not let it all weigh me down.  I don't want to live in fear.  Fear of Mike getting cancer again, fear of the kids having Lynch.

I want to be proactive, but even that seems like too much to take on sometimes.  Part of me wants to throw out every single plastic item in the house because of the risk of BPA.  Get rid of everything that contains refined sugar, high fructose corn syrup and white flour.  Then I have to take a step back and acknowledge that we are already doing things to be proactive.  My kids eat whole grain wheat bread and don't complain, they have less screen time than the average kid living in the US, they typically like most fruit and many vegetables.  So if they occasionally eat a pancake wrapped sausage on a stick for breakfast will that really undo all of the good stuff?

I have a lot to think about and I know I can't change the fact my husband's colon cancer was caused by a genetic issue.  My kids either have it or they don't - I can't change that either.  What I can change is how I deal with all of it while acknowledging that despite all the positive thinking this is a really crappy thing to have to live with, but it is what it is.