Saturday, July 10, 2010

Up and Down - Again

I hate, hate, hate the ups and downs of this stupid thing.  Yesterday was a great day, the cancer didn't seem to be the main focus of the day.  Sure, it was there. Because of it we went tubing & had a great family day.  Would we have done that if cancer wasn't a part of our current lives?  No, Mike & I would have both been at work yesterday and the kids with their sitter.  Am I grateful for yesterday? Absolutely.  Do I wish it had just been a normal Friday?  I don't know.

How can I be grateful and hate it at the same time? 

The fear is back today too.  I don't want to focus my energy on that, but sometimes it's SO hard not to.  The day after tomorrow is surgery.  I'm afraid of what else they will find, I'm afraid of the worst.  I'm afraid of what our future will be.  I'm afraid I won't be as strong as I need to be for Mike and the kids.  I much prefer the days when hope is stronger than fear.

I tell my kids not to use the word hate.  It's an ugly word and it's hurtful - just like cancer.

Not five minutes after I posted this, I ended up sitting on the floor rocking my son in my arms and crying as he cried & yelled at God and blamed God for Daddy needing to have surgery.  I know how he feels. 

Mike posted on his FB page: "God's role in my disease is difficult for an adult mind to grasp. It is impossible for a 6 year old. We tell our kids that God is present in our lives but we also say he is not to blame. God is the cure not the cancer, the doctors not the diagnosis, the healing not the hurt. Cal is tearfully angry today but has nowhere to direct the anger. Zoey is just happy to have a new bracelet. I wish I was 4 years old."

Friday, July 9, 2010

Great Family Day

Just returned from tubing down the Wisconsin River with Mike & the kids.  Couldn't have asked for a more beautiful day.  It's too bad we don't have more time in everyday life to just have a play day for no reason.  Mike said it's been a pretty nice two week vacation since getting the diagnosis.  It was important to him to spend time with us while he still feels good before the surgery.  Tonight the kids get to stay home with a sitter (thank you Emily!) and Mike & I are headed to the Comedy Club to spend a couple of hours laughing instead of worrying.  All in all a really good day.

I love my family & I love our life together.


Thursday, July 8, 2010

A Plan

Yesterday, for the first time in two weeks, I actually felt hungry.  I also slept through the night last night.  I think knowing what the next step is at least puts some order to all of this chaos.

The other day Mike came across a website - it's a site geared towards people diagnosed at a younger age than is typical.  There is a message board/forum as well.  I have to say, I love it!  Mike probably won't register with the site (he's just fine getting his support from people he already has a relationship with), but in less than 24 hours I had 14 responses to my post as a newbie.  Have I said before how amazing it is to have so much support?  My theory is that I can never get enough information to really be satisfied.  And, if I can get first hand info from people currently going through diagnosis & treatment as well as from their support people - all the better.   

My sister-in-law, Colleen, is organizing a group for the "Get Your Rear in Gear" 5K in Tinley Park, IL.  The run is July 25 - so they're moving quickly.  We won't be able to go this time, but I'm planning next fall in 2011 when Milwaukee holds the event.

Today is a good day.

Wednesday, July 7, 2010

One more day

After our emotionally draining day yesterday, I woke up today feeling more sad than angry.  Sad that Mike has to go through this, sad that the kids will have to go through it.  Each day we get closer to surgery, the closer Cal & Zoey come to having their world tipped over.  I can't imagine this won't have some kind of effect on them.  I hope though, when this nightmare is over, they won't remember most of it.

We have an appointment with a counselor today.  I made the appointment right after Mike's diagnosis not knowing if we would need it or not.  After some back and forth, Cal decided he doesn't want to go.  The pull of riding a scooter at his friend's house is just too strong.  As far as I'm concerned right now, that's a good thing.  Why should we force him to go?  We have been open and honest with the kids from the start - no secrets.  After next week maybe he'll change his mind. Cal likes Laura and she was a huge help to him in getting rid of the "worry monster" that showed up after Mike's truck accident.

We'll see how it goes today.  I honestly think we're doing OK so far in regard to talking to each other about it and involving our friends, accepting help, etc.  I also know that there can be a very fine line between having your act together and losing it completely.  I figure talking to Laura sure can't hurt at this point.

Tuesday, July 6, 2010

Anger & Faith

So, right now I'm mostly angry.  Angry enough that I want to scream, throw something, break something, you get the idea.  Problem is there is no one to actually be angry with and THAT makes me angry.  I don't blame anyone, I don't blame God.  God is the one who will help us get through this ugly mess.  I'm not focusing on the "what if we had..." or "if only...".  None of that matters one bit and there's no sense focusing energy on that kind of crap.  Right now I need to work on turning this angry energy into something more positive.  Maybe tomorrow I'll figure out how to do that.  For tonight though, I think I need to just be OK with the fact I'm angry.

Enough of that.  Here's what we found out today when we saw Dr Dachman.  Yep, Mike has cancer - no surprise there.  The oncologist also said it looks as though the lymph nodes are likely involved.  Again, no surprise.  That means we're looking at Stage 3 colon cancer.  What we weren't really prepared for though, was finding out that the polyp that had been removed also appears to be cancerous.  We had guessed the polyp had been removed from roughly the same area as the main tumor.  Unfortunately, it was removed from the lower sigmoid colon.  Essentially, Mike had two seperate cancers in his colon - one at each end.  When the polyp was removed, the cancer from that area was also likely removed.  Although there is no way to know that for sure at this point in time. 

Now comes another bizarre twist - If the lymph nodes had appeared to be clear on the x-ray & CT, the suggested course of action would have been to remove the entire colon.  By removing the entire colon - all of the cancer would also be removed.  However, because it is highly likely that the lymph nodes ARE involved, he is only having the orginally planned right hemi-coloectomy.  With the lymph nodes involved chemo is a definite reality.  If they weren't involved, then chemo would not necessarily be a part of the treatment.  The plan is that the chemo will not only attack any damaged lymph nodes, but also any remaining cancer cells from the site of the polyp.  So...take your pick A) you have to get chemo but also get to keep half of your colon or B) No chemo, but you lose your entire colon & have to change your lifestyle to be within arms reach of a bathroom for a very long time.  Not an easy decision when actually faced with it.

Surgery will be open as opposed to laparoscopic.  Dr Dachman wants to be able to see and feel everything including the surrounding organs and lymph nodes to be sure they don't miss anything.  If anything looks suspicious, it comes out.  Fine with me.

During the surgery on Monday a "Power Port" will be inserted under Mike's collar bone.  This will enable him to have, as he puts it, "drive through chemo".  We don't know a lot about it at this point, but it sounds as though he'll be able to do more at home rather than sitting at the hospital for treatment.

Following surgery Mike will be in the hospital for 4-6 days.  He gets an epidural that will last up to 36 hours (lucky guy), but he also gets a catheter (sorry, trying not to laugh).  We've decided after talking to Dr Dachman that we won't have the kids visit until Tuesday.  Monday he'll be out of it for the most part anyway so there's no point in getting the kids upset about Daddy being "sick".

Mike asked the doc how long it would have been before he would have been obviously sick enough to see someone if it hadn't been for his failed PT run.  Dr Dachman said within 90 days he would have known he needed to see a doctor.  By Christmas his liver would be fully metastasized.  And by this time next year, he wouldn't be with us.

There may be some people who wonder why God lets things like this happen.  Mike lives right, eats relatively healthy, is active, doesn't fit the 50 years and up demographic, and is a good person.  Up until now, I've always thought that it isn't God who "lets" things like this happen, faith in God is the reason we can get through the worst of the worst.  I haven't changed my mind on that one. Even with as bad as it might get over the next year, I HAVE to believe that God will help us through this.  I see God in so many things.  The relationship we have with our primary doctor & the surgeon, the friends who have jumped in to help us when we may not even know what help we need, our family who has always stood by us and will continue to stand by us even if they are hundreds or thousands of miles away.

Thank you to Pastor Todd for introducing me to this song:
"Holy Now" by Peter Mayer

When I was a boy, each week
On Sunday, we would go to church
And pay attention to the priest
He would read the holy word
And consecrate the holy bread
And everyone would kneel and bow
Today the only difference is
Everything is holy now

Everything, everything
Everything is holy now

When I was in Sunday school
We would learn about the time
Moses split the sea in two
Jesus made the water wine
And I remember feeling sad
That miracles don’t happen still
But now I can’t keep track
‘Cause everything’s a miracle

Everything, Everything
Everything’s a miracle

Wine from water is not so small
But an even better magic trick
Is that anything is here at all
So the challenging thing becomes
Not to look for miracles
But finding where there isn’t one

When holy water was rare at best
It barely wet my fingertips
But now I have to hold my breath
Like I’m swimming in a sea of it
It used to be a world half there
Heaven’s second rate hand-me-down
But I walk it with a reverent air
‘Cause everything is holy now

Everything, everything
Everything is holy now

Read a questioning child’s face
And say it’s not a testament
That’d be very hard to say
See another new morning come
And say it’s not a sacrament
I tell you that it can’t be done

This morning, outside I stood
And saw a little red-winged bird
Shining like a burning bush
Singing like a scripture verse
It made me want to bow my head
I remember when church let out
How things have changed since then
Everything is holy now

It used to be a world half-there
Heaven’s second rate hand-me-down
But I walk it with a reverent air
‘Cause everything is holy now

Monday, July 5, 2010

The next step

Had a good time yesterday with family.  Backyard fireworks were fun and it was great to spend some time NOT thinking about cancer.

I had a good talk with my mother-in-law.  She is a cancer survivor herself and more than anything doesn't want Mike to have to go through the same pain of chemo and radiation that she did.  I can't imagine what it must be like to have your child go through something like this. 

Our good friend, Justin, came for a visit as well.  I lost it a bit when he showed up, but I kind of thought I would anyway.  He was best man in our wedding and just one of those people you know you may not see often, but will always be an important part of your life.

Tomorrow is our next step.  The week and a half we've been waiting since the diagnosis has seemed at least twice that long.  We see the surgeon at 11 and will hopefully have more information about the tumor.  Is it contained within the colon or has it crossed muscle?  Does it appear to be a "normal" cancerous tumor or something out of the ordinary?  We may or may not have those answers tomorrow, but at least the oncology report will be available and might shed a bit more light on what we're dealing with.

I'm hoping we can sleep well tonight, but given the roller coaster ride my stomach has been on today, it doesn't seem all that likely.

Sunday, July 4, 2010

Independence Day

Some days are better than others - that's just the way it goes. Yesterday, for some reason was one of the more difficult days. Maybe it's just the idea that this "thing" is always with us despite the fact life goes on as usual. Being in this holding pattern of waiting isn't always easy. Let's get on with it and see what else we're dealing with. Books on the subject of colon cancer or cancer in general are both a help and hindrance, I think. The options are endless, so is the hope. But, so are the unknowns. Did you know that genetic testing to determine if Cal & Zoey are at a higher risk can influence their ability to get health or life insurance down the road? It's better to know that now, but it definitely adds to the worry when my mindset isn't as positive as I want it to be. I want to be independent of this thing that has wrapped itself around my husband and our lives. Today will be better.