Wednesday, January 16, 2013

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.

1 comment:

  1. Your words are all too familiar (pun intended). I've been writing about my life with Lynch (and my wife's concerns) since 1997. I'm still AliveAndKickn. If you like to write about it, keep going. It's great. If you like to keep in touch, I"m all over the place.

    Dave Dubin
    AliveAndKicknDD on Twitter