Saturday, July 3, 2010

Being proactive

In the last week two people close to us have made appointments for a colonoscopy because of Mike. Both are under 40 and more than 10 years away from the first "suggested" colonoscopy.
They are concerned enough to do it because they share one or more similar symptoms that MIke had. Although, it is only now looking back, that we understand they were warning signs of colon cancer and not just some random minor physical nuisances.

The kids

Yesterday we told the kids that Mike has cancer. The more we talk to each other and our support system, the more often the word comes up. Cal & Zoey needed to hear it from us before they heard it someplace else.
Neither of them seemed familiar with the word, cancer. This spring a kindergartner at Cal's school died from cancer. We wanted the kids to understand that Daddy's cancer is different and that we are hopeful that the surgery will get rid of it. We also told them about
Grandma "Moose" (Mike's mom) and how she overcame cancer the year I was pregnant with Cal. We wanted to warn them that they might see people acting upset about Daddy and that we don't want them to be afraid of that. Both kids seem to understand it is serious, but they don't seem to be too horribly disturbed by it. For that, too, I am grateful.
When Mike and I first talked about having kids we joked about passing on acne and crooked teeth. Now we talk about the reality of also passing on a risk of colon cancer & depression (I was diagnosed & have been on anti-depressants since the fall of 2006). Not quite so easy to joke about. Fortunately, we will be educated and can do as much as possible to limit the risks of both. Obviously, as in Mike's case, that doesn't mean it can't happen. But, would we have decided to not have kids had we known I would have depression & Mike would have colon cancer and that we could potentially pass those diseases on to our children? We can't protect our kids from everything, as much as we wish we could. None of this is our fault or the fault of our parents.
It just is.

Remaining realistic

While staying busy has been helpful, we are also realistic about what the immediate future may hold. If, in fact, the lymph nodes are also cancerous we know there will be a long haul with chemo. Getting things in order now will hopefully make that easier later.
I have amazing friends that are organizing a list of people that have offered to help in one way or another. Hopefully we won't need to utilize the list, but it will be there if necessary. I would list names of everyone who is trying to make this as easy as possible whether by physically doing something or being emotionally supportive, but I am afraid of forgetting a name or two. You know who you are and I love you.
The other day we took the kids to the beach. As usual the kids were both climbing all over Mike like he was a human jungle gym. At one point Mike told the kids to both hang on me so that "mommy will know she can bring you both to the beach alone". A week ago that comment wouldn't have fazed me at all. But now that same comment could mean something entirely different.
It's hard to believe it has only been 8 days since Mike's colonoscopy and we got the news. A lot has changed, but even more has remained the same. My kids still feel safe and loved, the people we thought were are friends have proven it again and again with their love & support, my family is as strong - stronger - than ever. I may hate cancer, but I love the life we have.

Staying Busy

Since finding out we have gone to a party at the CSA where we get our veggies, tied up loose ends at work, had dinner with good friends, camped overnight two nights, went to Great America & will spend time with extended family and enjoy the fireworks. Some people have wondered why we would do all of these things. Why not? Why should we sit home and wait and worry and make ourselves crazy about something we have no control over. We have a life to live. Some of staying busy is a defense mechanism, of course. The busier we are the less time we have to think about the "what ifs".
On the other hand it's a chance for us to remember what's really important. Spending time with friends and family. Reaching out to people we may not see much of anymore, but have a history with. It's funny, we have never even come close to using all of our cell phone minutes every month until now.
Great America yesterday was a perfect day. The weather was beautiful, the lines were short, the kids were excited and Mike's brother Ed & his wife Colleen joined us. Mike was tired, but was able to catch a quick nap while we rode a train around part of the park. Why would we want to sit at home and wait when we could be doing something fun? Without being fatalistic, we want to do as much as we can while Mike is feeling fairly well. At the minimum he's having major surgery in just over a week and will be recovering from that for at least a couple of weeks.

Something to think about

Other thoughts that come and go include wondering why now? What happened that this beast became apparent after 3-5 years of silently attacking my husband?
In March Mike had a roll over accident on his way to Truax Air Base in Madison. The truck was totaled, but he walked away from it. He saw a doctor the next day because he was concerned there may be glass in one eye - there wasn't, it was just a speck of dirt. A couple of days of Tylenol and everything was fine. Now I wonder if it really was? Maybe the jarring of his body as the truck rolled was enough to start the slow bleed from the tumor. We'll never know, but it makes me wonder if a roll over accident on the way to Air Force duty actually helped save his life.
Between the accident and his PT test it seems logical to me that the accident started something that over time was taking it's toll on Mike (anemia from the slow bleed) and ended with him failing his PT run. Without the accident, maybe there would have been no bleeding. With no bleeding, maybe no anemia. With no anemia, no doctor visit. With no doctor visit, a tumor that would have continued to grow silently for who knows how long.

From the bad something good

Obviously hearing a diagnosis of cancer is overwhelming. But, equally overwhelming is the incredible amount of love and support we have been shown by our friends and family. I continue to be amazed by the outpouring of well wishes & "what can we do". Mike has touched so many lives with his incredible generosity, humor & willingness to do anything for anyone. He constantly gives without expecting anything in return. He is my hero and I strive to be like him in giving without expecting anything.
This will also be a good learning experience for me. A test even. I have no hesitation about helping when someone asks me for help. But for me to ask someone else for help - that's a different story. I know that after surgery we may be in a position where I will NEED help and I have to learn to ask and accept that help. It's easy for me to think I have to "do it all", but realistically I also know it's impossible to do it all and stay sane. Admitting that and acknowledging it now will help, I think, when the time comes. I want to be available to Mike & the kids as much as possible, but that will mean letting other things go.

Now what?

The amount of information about colon cancer & its treatment is overwhelming. Want to know what types of chemo have what side effects? How about the difference between stage 3 & stage 4 or Dukes A, B, C? Or survival rates - that's a good one. But, what if the only information you have is "you have colon cancer and it will need to be surgically removed." There is no information that I have been able to find to describe the roller coaster of emotions that occur between diagnosis, confirmed diagnosis & surgery.
At this point we have absolutely no idea what we will be dealing with after July 12. All we have is the initial diagnosis. July 6 will be the confirmation from the oncologist.
The first 48 hours were spent in a state of shock as best as I can tell. Not a lot of tears, but plenty of fear of the unknown. I just wasn't able to "go there" and really think about what might or might not happen. Two nights of not sleeping & not really eating & just going through the motions of everyday life. Life needs to go on as normally as possible for the kids, which in some ways, makes the days easier.
Telling the kids wasn't as hard as we thought. We had the benefit of Zoey having had her tonsils out earlier in the year. Framing Mike's tumor (we weren't ready to tell the kids it was cancer) in that way made it easier for the kids to understand. Just like Zoey's tonsils weren't helping her and needed to come out, Daddy has a tumor in his colon that needs to come out because it shouldn't be there. They continue to ask questions and we continue to answer them. I made an appointment with a counselor Cal had seen in the past after Mike's roll over accident. Just in case. The appointment is for July 7 and the kids know if they want to talk to Laura they can. Or, maybe I will. Or, maybe we all will. That's the thing - we just don't know.

Thursday, July 1, 2010

How to deal?

While at the hospital we made the phone calls. Usually met with "What?" or "Who has cancer?" Amazingly, or maybe not, there were few tears. I think shock took over for the most part. I know it did for me. How else could I have a seemingly normal conversation about the love of my life, my best friend being diagnosed with cancer?
Since leaving the hospital & notifying most everyone we could think of we were left to wonder Now what? What do you do with that kind of news. OK, we meet with the surgeon again on July 6. At that time he'll have the oncology report to confirm again that Yes, it is cancer. July 12 is surgery to remove the right half of Mike's colon along with I don't know how many lymph nodes. Problem is - beyond that we don't know anything.

Good and not so good news

After Mike got back from the x-ray & CT scan, the doctor told us that fortunately the lungs & liver appear to be clear, but the lymph nodes are swollen, which could indicate the cancer is spreading beyond the colon. Apparently this beast has been forming for 3-5 YEARS! This, in a man with no risk factors. He's too young, too active, eats too healthy, and has no family history of colon cancer. There seems to be no explanation for why it has taken up residence inside Mike. The longest day of my life continues as Mike is told he needs three units of blood before he can leave the hospital. For a guy who donates blood on a regular basis he was a bit weirded out by actually getting blood instead of giving it. Later that evening Dr. Kramer comes in to see us. He wanted to be with the surgeon when he told us about the cancer, but timing and other committements on both ends didn't allow it. Anyway, Dr Kramer looked tired. He has been our family's doctor since we moved to Dodgeville more than 6 years ago. He was also born the same year as Mike. I imagine as a doctor it has to be difficult to be reminded of how fragile life can seem when someone you have provided care to is dealt such a huge blow. The good news is Mike is young and healthy (aside from that cancer thing), the bad news is, being young and healthy presents the possibility that the tumor isn't "normal cancer". Of course we won't know anything about that until after surgery and the biopsy. After discussing the pros and cons of a community hospital and a big city hospital, Mike & I are more assured than ever that this is where we want to be for the surgery. Nearly our entire support system is here. Our parents are close enough that they can be here within hours. Cal & Zoey can visit Mike in the hospital at any time. We can't think of a single reason to not take care of this in Dodgeville. At 9pm we finally go home - still in shock. The kids are staying overnight with a friend so we don't have to face them until the morning. What do we tell the kids? How much do we tell them? They're only 4 and 6. This isn't something any little kid should EVER have to deal with. Hell, NOBODY should have to deal with this.

Now I know what it feels like

Thursday evening-Friday morning Mike drinks a concoction that is designed to "cleanse his colon" 8 ounces every 10 minutes for an hour. Take an hour off. Repeat until clear. Mike & I arrive at the hospital for the 11:30 appointment, go through the registration, into the prep/recovery room, he puts on his cute hospital gown open and he is hooked up to an EKG & IV. The nurse is a good friend of mine who gives Mike a hard time just because she can. The anisthesiologist comes in and preps Mike for the procedure as he'll be completely knocked out for it. Not long after he is wheeled away for both the upper & lower GI scopes. About 45 minutes later the nurses bring Mike back to the prep/recovery room, get him situation, rattle off some numbers, say something to the anisthesiologist about removing a polyp and nobody says a word to me other than "he went through everything just fine and should be waking up in the next five minutes or so". About 10 minutes later, Mike wakes up. Nobody comes to the room for the longest time. I finally went out to ask if he could at least have some water and eventually a nurse came back to say she was sorry, but the doctor ordered more tests. An x-ray and CT scan would be taken in about an hour or so. In the meantime Mike gets to drink more of the "GoLightly" crap to clean out his already cleaned out system. We are told that the doctor would be in to see us before going to x-ray. Then nothing. The nurses leave. We wait. About 45 minutes later the doctor comes in and looks really uncomfortable. Somewhere in the back of my head I can hear myself saying "don't say it, you are not going to say what it looks like you are going to say". What I hear instead is, "There's no easy way to say this, but Mike, you have colon cancer". Now I know what it feels like to hear "you have cancer". Of course it wasn't said to ME, but it might as well have been. Mike is me. I am him. It's always been us. I'm not sure what else was said during the next bit of eternity because I was too busy trying not to throw up or pass out. My chest hurt and I couldn't get any air. Apparently, yawning is a reflex to get more oxygen into your body because I just couldn't stop yawning and I was anything but sleepy.

You're anemic? Really?

Monday morning, June 21 Mike sees Dr. Kramer who orders a blood draw to find out what's going on. Hooked him up to an EKG too. EKG results were just fine so now we had to wait on the blood results. Monday afternoon Dr Kramer calls and tells Mike he is "significantly anemic". Huh? Wouldn't that have shown up one of the gajillion times he donated blood? Next question was if Mike had noticed any bleeding. Nope. Nothing. So, wait for more blood test results to find out why he's anemic. Wednesday morning, June 23 Mike is anemic due to low iron stores. Basically, his body had used up all of the iron it was saving for a rainy day. Grab an umbrella, the storm is about to start. His red blood cell count was way down so the little oxygen he had in his blood was working overtime, which is why he had been so worn out. Determination is made that Mike is bleeding internally. But, where? Wednesday afternoon Need to find out where the blood is coming from. Doc orders a Fecal Occult Blood Test to do at home and from that it is obvious there is blood somewhere in his GI system. Thursday, June 24 Dr Kramer calls and says he's scheduling Mike for an upper & lower GI - tomorrow.

Thank God for the Air Force

Mike had been feeling "out of shape" for awhile and, of course, not letting on to me that he was feeling lousy. Then came annual PT - the dreaded mile and a half run. After pushing to get to the finish line Mike came in 4 minutes slower than one year ago and had barely made it at that. That's when I got his phone call to "go ahead and make an appointment with Dr Kramer". I joked that he was just getting old, never realizing just how awful Mike was feeling. Again, because he didn't let on. Guess it's a guy thing.