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.
On June 25, 2010, at age 37, my husband was diagnosed with colon cancer. Following a right-hemicolectomy, genetic testing determined the cause was due to HNPCC/Lynch Syndrome. On December 9, 2011 he had a subtotal colectomy.
Tuesday, April 19, 2011
Friday, February 25, 2011
Birthdays
Tomorrow our son turns 7 years old. How is that possible? There are some things that are so easy to recall even now. How amazed I was when I saw the positive result on the pregnancy test on our 10th wedding anniversary. The look on Mike's face when I told him and our subsequent debate over whether or not to go to the water park like we had planned to celebrate our anniversary. After all, there are signs all over the park stating that pregnant women "should not ride". How pregnant is too pregnant for a water slide? We went and had a great time.
I also clearly remember the night that we burned out the motor on our vacuum cleaner when we let it run for "white noise" in an attempt to get Cal to stop crying.
We've been through an overnight hospital stay for bowl obstruction with Cal, ongoing ear infections that finally resulted in him getting tubes, and "Blue Dog" going MIA for two weeks. We've had to get rid of "worry monsters" and work through school anxieties.
Somehow in those seven years, Cal has become this amazing kid despite his parent's short comings. He is compassionate and sensitive, can be totally halarious, loves to read, is sometimes too smart for his own good and fully immerses himself in whatever he happens to be interested in at the moment.
There is no way to prepare yourself for being a parent. Books can only tell you so much, well meaning friends or family can give you advice, but it's your own heart that really tells you what is right for you and your child. When I slow down enough to listen, Cal can teach me something new every single day.
Somehow it's easy to doubt myself when it comes to how I interact with my kids. But, when I really think about it, we must be doing something right. We've been honest with the kids about Mike's cancer. By keeping that dialogue going we will also talk with them about Lynch Syndrome when the time feels right.
Last week I was in New Orleans for the 5th time since Hurricane Katrina hit the Gulf area. I spent a week painting the inside of a house owned by a woman with a 15 year old son. Estelle had just purchased her home and was in the process of moving in when she was forced to evacuate. Estelle and her son, who was just 10 years old at the time, have never lived in their home. For more than 5 years they have gone back and forth between the FEMA trailer in the front yard, her mom's house in a nearby neighborhood and Baton Rouge where Estelle found a job following Katrina. Five years of slowly putting a house together that sustained wind and flood damage. Five years after dealing with corrupt contractors that took advantage of so many people following the hurricane. Yet, this is her home - that's why she slowly rebuilds. She is doing the best she can for her son with what she has. That's all any of us can do.
Happy Birthday Cal. I love you forever and always, no matter what.
I also clearly remember the night that we burned out the motor on our vacuum cleaner when we let it run for "white noise" in an attempt to get Cal to stop crying.
We've been through an overnight hospital stay for bowl obstruction with Cal, ongoing ear infections that finally resulted in him getting tubes, and "Blue Dog" going MIA for two weeks. We've had to get rid of "worry monsters" and work through school anxieties.
Somehow in those seven years, Cal has become this amazing kid despite his parent's short comings. He is compassionate and sensitive, can be totally halarious, loves to read, is sometimes too smart for his own good and fully immerses himself in whatever he happens to be interested in at the moment.
There is no way to prepare yourself for being a parent. Books can only tell you so much, well meaning friends or family can give you advice, but it's your own heart that really tells you what is right for you and your child. When I slow down enough to listen, Cal can teach me something new every single day.
Somehow it's easy to doubt myself when it comes to how I interact with my kids. But, when I really think about it, we must be doing something right. We've been honest with the kids about Mike's cancer. By keeping that dialogue going we will also talk with them about Lynch Syndrome when the time feels right.
Last week I was in New Orleans for the 5th time since Hurricane Katrina hit the Gulf area. I spent a week painting the inside of a house owned by a woman with a 15 year old son. Estelle had just purchased her home and was in the process of moving in when she was forced to evacuate. Estelle and her son, who was just 10 years old at the time, have never lived in their home. For more than 5 years they have gone back and forth between the FEMA trailer in the front yard, her mom's house in a nearby neighborhood and Baton Rouge where Estelle found a job following Katrina. Five years of slowly putting a house together that sustained wind and flood damage. Five years after dealing with corrupt contractors that took advantage of so many people following the hurricane. Yet, this is her home - that's why she slowly rebuilds. She is doing the best she can for her son with what she has. That's all any of us can do.
Happy Birthday Cal. I love you forever and always, no matter what.
Thursday, January 27, 2011
January 24, 2011
I just found out yesterday that one of my childhood friends has breast cancer. It's funny,if it weren't for Facebook, I would have no connection with her at all, yet she always had words of encouragement during Mike's battle. She is one month older than I am, has two young kids and is way too young for this. However, she also has an amazing attitude that will carry her through this ordeal and bring her out on the other side stronger than ever.
Cancer sucks and it doesn't play fair.
Cancer sucks and it doesn't play fair.
Monday, January 24, 2011
January 24, 2011
Finally feeling a bit more normal again after the Lynch confirmation last week. One thing I've noticed is that I have a definite pattern with all of this. The first couple of days are really rough, feeling kind of numb and looking for the nearest rock to crawl under. Then by day 3 or 4 more rational thinking comes back a bit and I start gathering more information about what exactly we're facing. By day 7 I feel like I have mostly adjusted to yet another new normal.
That isn't to say I don't still have moments when I just want it to all go away. It's easy to fall into that spiral of not wanting to accept any of it. If I kick and scream long enough it will all go away. But, like I tell my daughter, "has that EVER worked for you?"
Mike and I continue to absorb all we can from whatever resources we can find about Lynch Syndrome. All of it at this point comes from information we find on-line. I haven't read so many scientific journal articles since I was in grad school! We grab onto the positive stuff we find, like a person with colon cancer caused by Lynch has a higher survival rate than a colon cancer not caused by Lynch.
Actually, I don't think I'm so much afraid of cancer taking over Mike's body (well, I feel that way today, anyway). It's the uncertainty and all of the unanswered questions that gets to me. Colon cancer caused by Lynch Syndrome is also known as Hereditary Nonpolyposis Colon Cancer (HNPCC). The nonpolyposis (no-polyps) means that cancer can just start on its own. In the majority of non-Lynch colon cancers it starts with a polyp, which can be removed before they cause problems. With HNPCC there isn't always the "luxury" of having a polyp. Just *BAM* there's cancer.
So, we continue to gather information, make up our list of questions and wait for the final results of the genetic testing so we can move on to the next stage of this adventure.
That isn't to say I don't still have moments when I just want it to all go away. It's easy to fall into that spiral of not wanting to accept any of it. If I kick and scream long enough it will all go away. But, like I tell my daughter, "has that EVER worked for you?"
Mike and I continue to absorb all we can from whatever resources we can find about Lynch Syndrome. All of it at this point comes from information we find on-line. I haven't read so many scientific journal articles since I was in grad school! We grab onto the positive stuff we find, like a person with colon cancer caused by Lynch has a higher survival rate than a colon cancer not caused by Lynch.
Actually, I don't think I'm so much afraid of cancer taking over Mike's body (well, I feel that way today, anyway). It's the uncertainty and all of the unanswered questions that gets to me. Colon cancer caused by Lynch Syndrome is also known as Hereditary Nonpolyposis Colon Cancer (HNPCC). The nonpolyposis (no-polyps) means that cancer can just start on its own. In the majority of non-Lynch colon cancers it starts with a polyp, which can be removed before they cause problems. With HNPCC there isn't always the "luxury" of having a polyp. Just *BAM* there's cancer.
So, we continue to gather information, make up our list of questions and wait for the final results of the genetic testing so we can move on to the next stage of this adventure.
Tuesday, January 18, 2011
Reality setting in
Mike has Lynch Syndrome.
We knew there was a high probability, but to be told with all certainty still kind of knocks the wind out of you a bit. Although not nearly as much as being told your husband, at age 37, has cancer. Nothing can compete with that.
Yesterday Mike & I went to Madison so he could have another blood draw. We had a chance to talk with Laura, the genetic counselor, and she explained why more blood was needed.
We had originally been told (several months ago) that two of Mike's mismatch repair genes appeared to have mutations (MSH2 & MSH6) we were also told that typically MSH2 will also take out MSH6 so further testing would be done only on MSH2. The blood taken for that was sent to Quest rather than Mayo where all of the other testing had been done.
The results of that testing done by Quest indicated a result which can often have a false positive. In order to rule that out the same test was done at Mayo to confirm it. Instead, Mayo found a DIFFERENT mutation right next to the one Quest found. At this point either exon 7 is missing or exon 8 is duplicated so BOTH labs will now look for both of those mutations. The blood draw was needed yesterday because the labs have used up all of Mike's blood from doing the previous tests. It appears that Mike is very well known around Mayo Clinic now. Well, his blood and mutations are anyway.
The importance of finding out exactly which mutation is involved isn't so much for Mike, but for the rest of his family and our kids. Laura said as big of a pain as this all has been, it's actually a good thing Mayo retested for Quests findings. Had we just gone along with the first result and assumed it was a positive-positive and not have it rechecked we could have ended up having family members being tested for a mutation that never actually existed. The worst case would have been that genetic testing would be done on family to look for a mutation in exon 7, having everyone's results come back negative only to find out later - after someone else ends up with a Lynch cancer - that the mutation was actually in exon 8.
Once the two labs run tests again for both exon 7 & exon 8 we will - ideally - know exactly which exon is involved. From there we send that information to Mike's parents & siblings so if they decide on genetic testing the labs will know exactly what to look for. A process that should only take a couple of weeks. Not five months like it has for us.
There are a lot of issues to think about with this diagnosis and it can start to feel overwhelming (that seems to have been a pretty common feeling over these last 7 months). What can I do to protect my family? There is a 50% chance that Cal & Zoey also have Lynch, although we won't have them tested until they are much older. Knowing there could be something in their DNA that makes them more susceptible to certain cancers can be terrifying.
We are fortunate that Mike has already has decent life insurance through the Air Force. In all reality, a diagnosis of Lynch Syndrome pretty much rules you out for getting any life insurance if you aren't already insured. We also benefit from a really good health insurance plan through Mike's employer. We anticipate the rates going up, but at least we're insured.
There is so much more to sort through and think about. Everything from what we are eating to what doctors Mike should have on his "team". Is surgery something to seriously consider? No colon = no colon cancer, but that doesn't do anything for reducing the risk of brain, skin or other Lynch cancers.
I think everyone has been touched by cancer in one way or another, but Lynch Syndrome is this other beast just lurking below the surface. An estimated 600,000 people have Lynch, yet only about 5% know it. Now when I hear of someone young being diagnosed with any of the "Lynch cancers", I always wonder if Lynch is responsible.
Sometimes it's hard to not let it all weigh me down. I don't want to live in fear. Fear of Mike getting cancer again, fear of the kids having Lynch.
I want to be proactive, but even that seems like too much to take on sometimes. Part of me wants to throw out every single plastic item in the house because of the risk of BPA. Get rid of everything that contains refined sugar, high fructose corn syrup and white flour. Then I have to take a step back and acknowledge that we are already doing things to be proactive. My kids eat whole grain wheat bread and don't complain, they have less screen time than the average kid living in the US, they typically like most fruit and many vegetables. So if they occasionally eat a pancake wrapped sausage on a stick for breakfast will that really undo all of the good stuff?
I have a lot to think about and I know I can't change the fact my husband's colon cancer was caused by a genetic issue. My kids either have it or they don't - I can't change that either. What I can change is how I deal with all of it while acknowledging that despite all the positive thinking this is a really crappy thing to have to live with, but it is what it is.
We knew there was a high probability, but to be told with all certainty still kind of knocks the wind out of you a bit. Although not nearly as much as being told your husband, at age 37, has cancer. Nothing can compete with that.
Yesterday Mike & I went to Madison so he could have another blood draw. We had a chance to talk with Laura, the genetic counselor, and she explained why more blood was needed.
We had originally been told (several months ago) that two of Mike's mismatch repair genes appeared to have mutations (MSH2 & MSH6) we were also told that typically MSH2 will also take out MSH6 so further testing would be done only on MSH2. The blood taken for that was sent to Quest rather than Mayo where all of the other testing had been done.
The results of that testing done by Quest indicated a result which can often have a false positive. In order to rule that out the same test was done at Mayo to confirm it. Instead, Mayo found a DIFFERENT mutation right next to the one Quest found. At this point either exon 7 is missing or exon 8 is duplicated so BOTH labs will now look for both of those mutations. The blood draw was needed yesterday because the labs have used up all of Mike's blood from doing the previous tests. It appears that Mike is very well known around Mayo Clinic now. Well, his blood and mutations are anyway.
The importance of finding out exactly which mutation is involved isn't so much for Mike, but for the rest of his family and our kids. Laura said as big of a pain as this all has been, it's actually a good thing Mayo retested for Quests findings. Had we just gone along with the first result and assumed it was a positive-positive and not have it rechecked we could have ended up having family members being tested for a mutation that never actually existed. The worst case would have been that genetic testing would be done on family to look for a mutation in exon 7, having everyone's results come back negative only to find out later - after someone else ends up with a Lynch cancer - that the mutation was actually in exon 8.
Once the two labs run tests again for both exon 7 & exon 8 we will - ideally - know exactly which exon is involved. From there we send that information to Mike's parents & siblings so if they decide on genetic testing the labs will know exactly what to look for. A process that should only take a couple of weeks. Not five months like it has for us.
There are a lot of issues to think about with this diagnosis and it can start to feel overwhelming (that seems to have been a pretty common feeling over these last 7 months). What can I do to protect my family? There is a 50% chance that Cal & Zoey also have Lynch, although we won't have them tested until they are much older. Knowing there could be something in their DNA that makes them more susceptible to certain cancers can be terrifying.
We are fortunate that Mike has already has decent life insurance through the Air Force. In all reality, a diagnosis of Lynch Syndrome pretty much rules you out for getting any life insurance if you aren't already insured. We also benefit from a really good health insurance plan through Mike's employer. We anticipate the rates going up, but at least we're insured.
There is so much more to sort through and think about. Everything from what we are eating to what doctors Mike should have on his "team". Is surgery something to seriously consider? No colon = no colon cancer, but that doesn't do anything for reducing the risk of brain, skin or other Lynch cancers.
I think everyone has been touched by cancer in one way or another, but Lynch Syndrome is this other beast just lurking below the surface. An estimated 600,000 people have Lynch, yet only about 5% know it. Now when I hear of someone young being diagnosed with any of the "Lynch cancers", I always wonder if Lynch is responsible.
Sometimes it's hard to not let it all weigh me down. I don't want to live in fear. Fear of Mike getting cancer again, fear of the kids having Lynch.
I want to be proactive, but even that seems like too much to take on sometimes. Part of me wants to throw out every single plastic item in the house because of the risk of BPA. Get rid of everything that contains refined sugar, high fructose corn syrup and white flour. Then I have to take a step back and acknowledge that we are already doing things to be proactive. My kids eat whole grain wheat bread and don't complain, they have less screen time than the average kid living in the US, they typically like most fruit and many vegetables. So if they occasionally eat a pancake wrapped sausage on a stick for breakfast will that really undo all of the good stuff?
I have a lot to think about and I know I can't change the fact my husband's colon cancer was caused by a genetic issue. My kids either have it or they don't - I can't change that either. What I can change is how I deal with all of it while acknowledging that despite all the positive thinking this is a really crappy thing to have to live with, but it is what it is.
Friday, January 14, 2011
Questions, Questions, Questions
This should have posted a week ago, but I couldn't access my blog!
Questions. questions, questions
Now that Christmas and the rest of the holiday season is over, the results of the genetic testing is once again in the forefront of my mind. For the time between December 23 and January 3 it was fairly easy to not think about it because we knew nothing was going to happen during that time anyway.
Now it's the end of the first week in January and I'm getting antsy again. I don't want to be thinking about this so much, but it just feels like things are still so unsettled. I sent an email to the genetic counselor on Wednesday, but haven't heard back. That gets frustrating as well - not getting a response. Most likely she has nothing to tell us, we are not her only clients, and no doubt there are people in more serious situations than we currently are. On the other hand - this is serious for us. Will anything change if it is finally confirmed, that yes, Mike does have Lynch? Who knows. Probably not.We have already made some changes. Did you know that the spice turmeric gives EVERYTHING a weird almost neon green/yellow hue? Yet, it is in nearly everything we prepare for dinner now because it is a potent anti-inflammatory and may help inhibit the spread of cancer. It's a minor change, but a change nontheless.This evening I decided to check out http://www.colonclub.com/ again. It's been a while since I was on their message board. Tonight I was again reminded of how fortunate I am that Mike is now healthy and that his cancer was found when it was. There was a post from a woman who was married on August 9, 2010 and on August 23 her husband was diagnosed with stage IV colon cancer. He died in his sleep early this morning and now, just 5 months after pledging to spend their lives together, she is a widow.
Who knows why things happen the way they do. I can ask all the "why" questions in the world, but never be satisfied. There are no clear answers for any of it. Now it's Friday night and I know nothing new will come up over the weekend so I will go back to my "life goes on like normal" routine until Monday morning when I again wait for the results from the genetic testing.
Questions. questions, questions
Now that Christmas and the rest of the holiday season is over, the results of the genetic testing is once again in the forefront of my mind. For the time between December 23 and January 3 it was fairly easy to not think about it because we knew nothing was going to happen during that time anyway.
Now it's the end of the first week in January and I'm getting antsy again. I don't want to be thinking about this so much, but it just feels like things are still so unsettled. I sent an email to the genetic counselor on Wednesday, but haven't heard back. That gets frustrating as well - not getting a response. Most likely she has nothing to tell us, we are not her only clients, and no doubt there are people in more serious situations than we currently are. On the other hand - this is serious for us. Will anything change if it is finally confirmed, that yes, Mike does have Lynch? Who knows. Probably not.We have already made some changes. Did you know that the spice turmeric gives EVERYTHING a weird almost neon green/yellow hue? Yet, it is in nearly everything we prepare for dinner now because it is a potent anti-inflammatory and may help inhibit the spread of cancer. It's a minor change, but a change nontheless.This evening I decided to check out http://www.colonclub.com/ again. It's been a while since I was on their message board. Tonight I was again reminded of how fortunate I am that Mike is now healthy and that his cancer was found when it was. There was a post from a woman who was married on August 9, 2010 and on August 23 her husband was diagnosed with stage IV colon cancer. He died in his sleep early this morning and now, just 5 months after pledging to spend their lives together, she is a widow.
Who knows why things happen the way they do. I can ask all the "why" questions in the world, but never be satisfied. There are no clear answers for any of it. Now it's Friday night and I know nothing new will come up over the weekend so I will go back to my "life goes on like normal" routine until Monday morning when I again wait for the results from the genetic testing.
Friday, December 24, 2010
Christmas Eve
I told Mike a while ago that I honestly did not need or want anything for Christmas this year. I have said that in the past, but probably didn't really mean it. This year is different. The fact that Mike is healthy and cancer free is enough for me this year. My family is together. My kids know their dad feels good and the cancer is gone.
Of course, Mike being Mike, he still bought gifts. Thinking about it now, I actually feel relieved. (Not because I'm getting presents, although I won't complain!) This means that cancer is not front and center in our lives. Like every other Christmas we will go to church tonight and sing "Silent Night" by candlelight, try to convince the kids to go to bed at a somewhat reasonable time, and wake up way too early tomorrow morning because we are too excited to sleep. That's what I really wanted for Christmas.
The routine and the normalcy with the people I love the most.
Of course, Mike being Mike, he still bought gifts. Thinking about it now, I actually feel relieved. (Not because I'm getting presents, although I won't complain!) This means that cancer is not front and center in our lives. Like every other Christmas we will go to church tonight and sing "Silent Night" by candlelight, try to convince the kids to go to bed at a somewhat reasonable time, and wake up way too early tomorrow morning because we are too excited to sleep. That's what I really wanted for Christmas.
The routine and the normalcy with the people I love the most.
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