Feeling the need to do something

Every now and then life slows down and I am again reminded about how much our life is affected by Lynch.  It's not like we live in constant fear, but it's more like an awareness of something lurking in the shadows that really never goes away.  

As March approaches, so does Colorectal Awareness Month and there is a push to make March 22 Lynch Syndrome Awareness Day.  Many Governors & Mayors have signed proclamations of support, yet there is still so much education to be done.  For my part I have contacted our small town Mayor and submitted a "Letter to the Editor" to our once weekly newspaper.  Still, it doesn't seem like enough.  Being in a semi-rural area of Southwest Wisconsin resources feel limited.  The fact that nobody in Mike's immediate family has been tested is also frustrating.  One uncle and his daughters have been tested, but not one of Mike's three siblings. I still deal with anger about that.  Even my son at age 9 doesn't understand why someone wouldn't want to be tested and find out for sure.  

I think we are doing the best we can with screenings for Mike and the fact he no longer has a colon relieves a bit of that anxiety.  However, I can't help but think about how fast Lynch cancers can come up and sometimes it's difficult to push that fear aside.  Especially because it concerns my best friend and father of my kids.

Just Stuff

No idea what the title for this post should be as there are so many things going through my mind and my heart.  For so long I can go about life and hardly give Lynch Syndrome and cancer a thought.  Then there are the things that come up to remind me of how much this really does affect my life every single day.  Even though I don't have LS, three of the people I care about more than anything else in this world either have it or have a 50% chance of having it.  Is that rash Zoey has related to Lynch?  Are those digestion issues Cal has on occasion because of Lynch or because he is an almost 9 year old boy?  Nearly every little childhood blip makes me wonder. 

Cal has been asking about being tested.  We have been honest with the kids, but only give them information as they ask in a way they can understand.  Cal said he can't believe someone would not want to find out if they have Lynch.  He's a smart kid.  I think because Mike came through everything so seemingly well (and doesn't complain about much of anything) the kids don't have a real fear of cancer.   Mike was fortunate enough to not have to endure radiation and chemo so the kids never saw their Dad "sick".  Hurting from surgery, yes, but not sick.

Now Mike has cellulitis.  While not related to Lynch Syndrome, it is because of LS that it happened.  Following his subtotal colectomy in December of 2011, he developed a rash on his finger.  Likely due to a reaction the adhesive used for the "pulse ox".  The rash progressively got worse, extending down his finger yet the reaction from the various doctors he saw was always "Oh, that's weird.  Not sure what that is."  Various topical solutions have been tried, but the issue continued to get worse. This week he woke up with severe pain in his arm that began to travel down his arm and then developed a rash that ran the length of his arm.  Now he has strong antibiotics and an oral anti-fungal medication.  If he does not have an improvement by Friday he will likely need an IV to administer the antibiotics. 

It doesn't help that I've been missing my Mom a lot lately.  I really want to talk to my Mom when stuff like this happens.  Then last week I watched a grandma walk around a track with her young granddaughter as she practiced roller blading.  It's simple things like that which can suddenly make me so sad thinking of what my kids are missing out on. 

I know there are others who are suffering with so much that I feel petty complaining about this stuff.  I also know if I don't "let it out" constructively, my family will be the ones to have to put up with me.

Missing My Mom

I know this post doesn't have to do with colon cancer, Lynch Syndrome or any of the other expected issues, but I needed a place to put my thoughts.  FB seems too public, which I guess this is too, but someone would have to make a choice to read this rather than just see it pop up on their FB page.

September 9 is the actual date Mom died.  But, it was one year ago tomorrow - the Friday after Labor Day that I keep thinking of as the anniversary.  There are still moments the pain of missing her is so intense that I can't breathe.  

There are too many "anniversaries".  The day she went into the hospital, the day she was supposed to come home, the last day I talked to her on the phone, the day Zoey and I arrived at the hospital to find her in ICU on life support, the evening my Dad & brother and I watched the doctors stabilize her sure that she was going to die then, the night we all gathered at Dad's and acknowledged the reality that we were going to take her off of life support.  

Then finally, September 9 - the Friday after Labor Day, the day we gathered in that room with the doctors and went around the table giving our consent to let Mom go.  All of us being with her as they took her off the machines. Dad, Scott & I, Mike & Billie, Uncle Rich and Aunt Colette.  Watching the monitors, waiting for what seemed like an eternity.  Hope still creeping in mixed with doubt.  Did we do the right thing?  Selfishly we all wanted her back, but because we loved her we let her go.  

  

Scanxiety

Time for the annual CT results.  Last week Mike had his scan and this afternoon we meet with the oncologist to go over the results.  We aren't anticipating anything out of the ordinary, but just in case, the kids will be at a friend's house after school so I can also go to the appointment.  Mike's CEA level is at 2.5 - anything below 5 is considered normal. However, I don't put a lot of faith in those numbers considering his CEA was at 0 when he was originally diagnosed with cancer.

It's hard to believe how different things were two years ago.  Mike wasn't feeling great, mostly run down and tired. What a shock to find out he had cancer.  Since then life has evened out for the most part in regard to Mike's health.  Even to the point of taking things for granted again.  I guess on one hand that's good, it means we aren't living in fear.  On the other hand if anything positive came out of the experience it was the realization of how fortunate and blessed we really are, which we should never take for granted.

All in the Family

It's always interesting how opportunities present themselves.   A couple of months ago, Mike attend the funeral of one of his uncles (his mother's half-brother).  While there he had a chance to talk to another uncle (his mother's full-brother) and tell him about the subtotal colectomy he had in December and to give him some information about Lynch Syndrome.  His uncle had no idea Mike had surgery in December or that he had been diagnosed with Lynch.  Mike's aunt and uncle had never heard of Lynch. 

Due to this conversation, Mike's uncle decided to be tested for Lynch and, ufortunately, he tested positive.  Fortunately, now he knows and can take all the precautions and do all the surveilence he needs to best protect himself.  He also has two daughters who will need to decide if they will also be tested.  Had Mike's other uncle not passed away, the conversation never would have happened.

Update:
We have now found out that one of Mike's cousins also has tested positive.  I am sad that they are finding themselves in this situation, but relieved that they know and that the entire family is being proactive in making sure they do everything they can to stay on top of this thing.  Her sister is going to be tested next week so there is still more waiting for them.  I pray her results are negative.

We are still hoping and praying that Mike's siblings will be tested and not wait until it's too late.  A diagnosis of Lynch Syndrome beats a diagnosis of cancer.

Better days

Four weeks post-surgery and Mike is doing exceptionally well!  He has been going to work a few hours each day since Tuesday. For a guy who works outdoors for a living, being cooped up in the house "recovering" was really getting to him. He probably does more than he should, but if he didn't that just wouldn't be Mike.  Yesterday he even attempted to go hunting.  Having weather in the mid-40's was enough incentive for him to go out in search of venison.  Just being outside for a few hours walking around in nature wore him out, but as sore or tired as he may have been I'm sure he had no regrets.

Life without a colon has been less eventful than we anticipated.  We have our "spare bathroom" in the basement, but the kids have only needed to use it twice.  Mike is cautious about what he eats and has gradually been adding in vegetables and more fiber.   Maybe more information than anyone would want to know, but essentially if he eats a salad it comes out looking like a salad!  Because of that, he is going to talk to a dietician.  It seems reasonable to think that he is missing out on certain nutrients simply because his body doesn't have time to absorb them.  I'm not sure what the long-term effects of living without a colon will be, but it can't possibly be as bad as getting cancer again. 

For the time being Mike continues to heal, we juggle the everyday family things like school, homework, Scouts, ballet and what to have for dinner.  Sometimes mundane is good.

A New Year

I am cautiously optimistic about 2012. 

At the start of 2011 I was more than happy to put 2010 behind me and fully expected a better year.  After all, how much worse could it get than Mike having cancer & being diagnosed with Lynch Syndrome?  Then in September my Mom died. 

Today I started going back through Facebook to the weeks leading up to Mom's death.  At the time I wasn't blogging about it, but was putting it out on FB, making lots of phone calls and talking with my family.  Now, I regret not blogging.  I am trying to figure out how best to transfer all of those posts I made, in addition to the responses from the many, many people who supported my family and me during that time.  I was glad to see the posts are all still there and it is just be a matter of making the time to organize them and save them somewhere besides FB.
I had a rough time with the whole New Year's thing.  One of my life-long friends whose husband died unexpectedly earlier in 2011, put into words what I was thinking when she wrote, "kinda sad leaving 2011 behind because Brian was still part of that year".  I know exactly what she means.

I am also concerned about Mike's family.  So far none of his siblings have been tested for Lynch Syndrome.  Mike and I have talked about offering to pay for the blood test, which is all they need to determine whether they have Lynch or not.  There is also the issue of cousins and uncles that may also be affected by this.  It's a struggle for me to understand their fears about insurance with the fact a simple blood test will either "let them off the hook" or allow them to be as prepared as possible to deal with Lynch head on.

I know 2012 will have both good days and bad and sometimes it's a matter of writing or saying what I WANT to be feeling rather than what I am actually feeling.  Not sure if that's me wanting everyone to think I'm just fine or if, in someway, I know I am OK and things will get better.

Regardless, it'll be interesting to see what happens.