One step forward, two steps back...

What a difference a few hours makes following major surgery.  Yesterday morning Mike was wowing everyone with his determination to get out of here by walking to the end of the hall and back four times before mid-afternoon.  Besides preventing blood clots, walking will help get his bowels working.  Let's just say it worked.  It's one thing to have an idea of how things will progress, but it doesn't necessarily make things any easier when it happens. 

Along with getting aquainted with his new plumbing, Mike had issues with low potassium and was running a fever.  The potassium caused his arm to swell up and he had a severe burning sensation in his hand and arm., which we were told that it is an unfortunate side-effect for some people.  There were also issues with his pain meds and trying to find a combination of things that would work best for him. After much trial and error I think he's back to what he had in the first place.

It's difficult to see Mike in pain and know there is so little I can do to help.  When I left the hospital at midnight he was doing better than he had earlier in the day. and he was sleeping again when I returned to the hospital this morning at 6, but he said he had a rough hour between 4-5.  His night nurse has some concern there may be an infection because Mike also had some cramping so they will have to do some labs to check for that.

I am trying to keep all of this seperate from the experience we had with my mom three months ago, but sometimes it's difficult.  Getting some sleep last night helped, but I know I'm still distracted and find myself having to push some of those less rational thoughts away to deal with later.  I know I still need to deal with the feelings & thoughts that I have pushed down over the last few months in order to function in the present and be fully available to Mike and the kids. 

Today though the kids will go back home with Mike's mom and do all of the things 6 & 7 year old kids should do, like Scouts, school, ballet, play with friends.  My Dad will head back to Minnesota today and I will stay with Mike.  We wanted the kids to be able to see Mike this weekend and know that he is OK, but it will be good to not have to worry about them.  Hanging out in a hospital is no fun for anyone and they've had more than their fair share of it.

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.

Good-bye colon

What an immense relief that surgery is over and everything went perfectly!  Turned out that the surgeon did not construct a "j pouch" after all.  Apparently the way Mike's small intestine was "tethered" during his first partial colectomy prevented it.  Fortunately, the surgeon was able to keep all of the rectum and could attach the small intestine directly to it, which he feels will serve Mike better anyway.

Regardless, it will be a rough 3-6 months while his body adjusts to life without a colon.  Nothing we can't handle though.  While the threat of colon cancer gone, Mike will still have to be screened regulary for other Lynch Related cancers. However, none are anywhere near as high a risk as the 80% chance for colon cancer.  I still feel the same way I did 18 months ago when we were first told Mike had cancer.  If this was all going to happen to someone, it might as well be us.  We'll be fine.  We will get through this together.

I don't know how many times someone has told me that we have had more than our share of crappy deals over the last two years.  Sure, there are days I want nothing more than to crawl under the nearest rock and stay there for a really long time.  Sometimes it takes a conscious effort to not shut down and there are days I know I'm struggling to keep it together.  I also know, even when things are at their worst that it WILL get better.  The saying "one day at a time" just doesn't always cut it.  Sometimes it's "one hour at a time" or even "one minute at a time".  But, it does get better eventually.  I also know that someone else always has it worse than I do.  My life is blessed in so many ways and when I'm in the middle of my own pity party I have to remind myself of that.

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.

Living with Lynch Syndrome

The conference Mike and I attended this weekend was both hopeful and realistic.  The amount of information was a bit overwhelming at times, but helped to put into perspective the reality of living with Lynch Syndrome.  To be in a room with nearly 100 other people that have been touched by LS and know that they ALL completely understand what you have gone through and will continue to go through is pretty amazing.  Being able to have a conversation with someone about LS without their eyes glazing over is tremendously supportive.

We learned that Lynch tumors grow differently than non-Lynch tumors, that polyps associated with Lynch are often different than regular polyps, and how treatment varies based on whether the cancer is Lynch related.  The other thing I learned is just how resilient this community of people can be.  It was not unusual to hear of people having several incidents of colon cancer, followed by two other cancers associated with Lynch.  Yet they are still alive because of strict surveillance and having doctors who knew what to look for.

On the other hand, even with surveillance there are stories of people being diagnosed with Stage III colon cancer even after getting yearly colonoscopies.

This conference was also the kick in the butt we needed to get more proactive in Mike's care.  It's easy to get complacent, even about Lynch Syndrome, when the rest of life continues on as normal.  While I am grateful to live in the community we do and that we were able to be close to our support system during Mike's surgery and recovery last year, I also know that we need to look beyond Dodgeville if we are to do everything we can to keep Mike cancer-free.

We have decisions to make in regard to how we proceed.  The prescribed treatment for Lynch Syndrome is removal of the entire colon. In addition, a woman should have a hysterectomy including ovaries and fallopian tubes just as soon as she is done having children.  These are enormous life-changing decisions.  Deciding when to have our children tested is huge too.  One one hand if they are both negative for Lynch we breathe a huge sigh of relief with the knowledge that they are at no higher risk for colon cancer than the general population.  But, what if one or both are positive?  I'm not ready for that answer yet.  The idea of my kids having to live with this breaks my heart. 

One story was of a dad that had colon cancer and based on some family history genetic testing was done.  The results indicated that he had Lynch Syndrome.  At that point his three children were also tested.  One daughter was negative, but his son and other daughter are positive.  Shortly after confiming that she too had Lynch, his daughter had her first colonoscopy.  At age 27, she had colon cancer.  Had her dad not undergone the genetic testing for Lynch, his daughter would not have undergone a colonoscopy.  Her dad saved her life because he agreed to a simple blood test.

Connecting with extended family and encouraging everyone to be tested is the only way to keep this under some semblance of control. Knowledge is power. In the case of Lynch Syndrome, ignorance is not bliss - ignorance is often fatal.


I HATE, HATE, HATE Lynch Syndrome.  I HATE that my husband has Lynch Syndrome.  I HATE that my kids might have Lynch Syndrome.  I HATE that Mike's siblings might have Lynch Syndrome. 

But, I am so grateful that we know about Lynch Syndrome.

Time Goes On

It's hard to believe it has been almost a year since Mike was diagnosed with colon cancer.  To see him now one would never know how sick he was last year.  He has the physical scars from surgery and the chemo port (which he never needed to use, thank God), and although cancer is now a part of who we are as a family it isn't ALL we are.


On Saturday we will attend a conference about living with Lynch Syndrome.  This comes exactly 51 weeks to the day of Mike's first colonoscopy.  Since then he has had surgery to remove 1/3 of his colon, a colonoscopy in December that came back clear and an abdominal MRI this spring that showed all is still clear.  Plus he ran faster for his Air Force annual PT this year than he did TWO years ago before all of this started.  So, why does the anniversary bring up the fear again?  There are no indications at all that Mike is anything but completely healthy yet I can feel it creeping in.  I know it's a normal reaction - the anniversary of anything traumatic can bring those feelings back.


Overall life is good.  My family is healthy and we are stronger for what we have gone through.  I'm grateful that we know Lynch was the cause and we can be prepared even with the uncertainty of when colon cancer will rear it's ugly head again.  It's not a pessimistic view, just realistic.  The likelihood of it happening is high, but we know it will be caught early and taken care of when it happens.

April 19, 2011

It's been almost two months since I posted.  I think about posting now and then, but life has a way of moving on and that's a good thing. 

Yesterday Mike had a blood draw to check his CEA (carcinoembryonic antigen) levels.  An increased level can indicate the presence of cancer, but not always.  When Mike was originally diagnosed, his level was in the normal range.  We'll find out the results next week when we meet with the oncologist again.  This will be our first meeting with him since it was confirmed that Mike has Lynch Syndrome. 

Some of the questions we need to ask: What type of surveillance needs to be done and how often?  Should we have the kids tested now and do it anonymously or wait and let them decide when they're older?  If we have the kids tested now, will it really make a difference in how we proceed from here?  They are obviously at risk because Mike has Lynch so early screenings will happen anyway.  However, if they are negative for Lynch then they have the same risk as the rest of the population for getting colon cancer and wouldn't need to have such an early colonoscopy at 25 or younger.  What can we tell Mike's family, especially siblings, so they can make their own informed decision about testing?

Then there's Mike feeling tired.  There's a logical explanation because it's fire season.  He's been doing prescribed burns for the last month, which means long hours and a lot of physical work, not to mention the smoke.  But, there's still the little nagging voice in my head that tells me to look at him closer.  Last year I didn't notice that he was getting paler and paler.  When you see someone every day and you aren't looking for obvious signs that he isn't well, it's easy to miss.  Now I look.  When he says he isn't very hungry or that he feels full after eating only half of a meal, I'm reminded of last year.  For about two months before we found out he had cancer, he complained about feeling full even though he hadn't eaten very much.  It's hard not to go there and think about the worst. 

Next Wednesday can't come soon enough.  I want to know what we do next.  There was talk about doing an MRI sometime in June or July, but that was before Lynch.  Maybe the onc will schedule it sooner.  Maybe Mike will have a colonoscopy in June instead of December.  After his December colonoscopy came back clean he was told he didn't need another one for a year.  That was before Lynch.

Yep, life keeps moving on.  Then when you least expect it, the past sneaks back in.