Mike and I met the genetic counselor yesterday who had gone over Mike's "pedigree" aka family history. I always think of Mike having a really big family, but in reality, while he has a lot of half-uncles there are not many full aunts and uncles. Because of this there isn't enough family history to go on to get a strong "yes it is hereditary" or "no it is not."
Basically we're looking at three possibilities. The first is that this was a weird, freak, single event that just happened because Mike is one of the 6 in 100 people that will get colon cancer. The other two possibilities will be deteremined by genetic testing.
Hereditary colon cancer is caused by an altered gene that is passed on in a family. One potential hereditary form is Lynch Syndrome or HNPCC (Hereditary Non-Polyposis Colorectal Cancer). People with HNPCC have an 80% risk of developing colorectal cancer during their life.
MYH-associated polyposis is the other possibility. Typically, this causes multiple colon polyps and is caused by a recessive gene, meaning both parents must be carriers and their children have a 1 in 4 chance of having MYH. Mike only had one polyp (which was cancerous) in addition to the tumor, but it is probable that the tumor started as a polyp, which is why he will also be tested for this.
For the time being we just go on with life, which I must say, is kind of a relief. Nothing more can be done until we get results in about 4 weeks.
Not sure how much more I'll feel a need to blog until then. We'll see. Sometimes feelings and thoughts just seem to creep up out of nowhere and catch me off guard.
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.
Thursday, August 26, 2010
Tuesday, August 24, 2010
Next up - Genetic Counseling
Apparently, life is getting back to normal considering I haven't posted since last Thursday. Today Mike was up at 3:30 am, at work by 4:30, taking down trees at our CSA farm by 2:00 and home at 4:30. 10 minutes of conversation and then Zoey & I were off to ballet and then a church meeting for me. That sounds about right. It's crazy, but that's our life and I wouldn't trade if for anything.
Tomorrow is the next step in our journey - meeting with the genetic counselor in Madison. I don't know what to expect, but imagine that she'll list the pros and cons of genetic testing. I don't know what she could tell us that would make us say, "No, we don't want to find out anything." But, apparently there are a lot of people that just don't want to know if they have genetic markers that could be significant for themselves and/or their children. Maybe it's fear or maybe it's optimism that would cause someone to make that decision. For me, being as educated as possible, having as much information as possible and knowing what our options are is what helps me feel more in control of a situation that I have had little control over.
Because of all of this I have also started researching our family histories on ancestry.com. I am now officially addicted, I think. Maybe that's why I haven't blogged lately...
The catalyst was finding out that Eastern European Jews are at a higher risk for Lynch Syndrome, which is the main genetic marker for colon cancer risk. As far as Mike knows he has no Jewish ancestry. However, his family is from Lithuania & Austria so the potential is there. Again, maybe it's a stretch, but by DOING something I feel like I have a bit more control. As an added bonus, it's been really cool to find out where our families are from.
No doubt I'll have more to post tomorrow.
Tomorrow is the next step in our journey - meeting with the genetic counselor in Madison. I don't know what to expect, but imagine that she'll list the pros and cons of genetic testing. I don't know what she could tell us that would make us say, "No, we don't want to find out anything." But, apparently there are a lot of people that just don't want to know if they have genetic markers that could be significant for themselves and/or their children. Maybe it's fear or maybe it's optimism that would cause someone to make that decision. For me, being as educated as possible, having as much information as possible and knowing what our options are is what helps me feel more in control of a situation that I have had little control over.
Because of all of this I have also started researching our family histories on ancestry.com. I am now officially addicted, I think. Maybe that's why I haven't blogged lately...
The catalyst was finding out that Eastern European Jews are at a higher risk for Lynch Syndrome, which is the main genetic marker for colon cancer risk. As far as Mike knows he has no Jewish ancestry. However, his family is from Lithuania & Austria so the potential is there. Again, maybe it's a stretch, but by DOING something I feel like I have a bit more control. As an added bonus, it's been really cool to find out where our families are from.
No doubt I'll have more to post tomorrow.
Thursday, August 19, 2010
Just keeps getting better
Talk about ups and downs with this thing! Today Mike saw the surgeon and as of Monday, August 26 he will be 6-weeks post op. According to doc, after Monday Mike can push a car if he wants to. Absolutely no restrictions. Even gave him a letter indicating he can go back on duty with the Air Force after the 26th. The next colonoscopy is scheduled for mid December, not mid October like I thought the oncologist suggested yesterday.
The only thing left between now and then is the genetic stuff. If all of that comes out negative and the colonoscopy is clear in December we will have one FANTASTIC Christmas!
It still amazes me this has all happened in the span of two months.
The only thing left between now and then is the genetic stuff. If all of that comes out negative and the colonoscopy is clear in December we will have one FANTASTIC Christmas!
It still amazes me this has all happened in the span of two months.
Wednesday, August 18, 2010
It seems different this time
We went to the appointment with the oncologist today not knowing what to expect. First Mike had a blood draw, which shows that he is no longer anemic, but his iron is still a bit low. For the next couple of months he'll need to stay on the iron pills, but only has to take one a day. So, good news there.
Then we get the news we came for. The tumor board as a group came to the conclusion that Mike will not have chemo. They are sticking with the Stage 1 diagnosis, which indicates only more frequent screenings rather than anything more invasive after surgery. However, he did not want the port taken out at this time as he would rather wait until after the next colonoscopy and the results of genetic testing if Mike goes through with that.
We left the office with no new information, yet somehow I feel more settled about it now. Maybe it's because I know a team of professionals went over Mike's case and came to their most educated decision. Maybe because it's been three weeks since the last appointment with the oncologist and I had that time to get used to the idea that we have to trust the lab results and the process. Or, more likely, I just NEED to be more settled about it. Fear can be paralyzing, but so can uncertainty to an extent. I don't want to live day to day wondering if there are still cancer cells in Mike's body. I can't live that way.
While Mike's health at this time is better than it has been in months and we are incredibly fortunate that Mike's civilian job has benefits that covered medical bills and paid time off. However, we also count on monthly income from the Air Force. While Mike is unable to physically work on base, he will be able to do some correspondance from home. That will help make up some of the difference. It's a difficult balance. Maybe vacation last week seems like a luxury we can't afford, but there is also a need for normalcy and feeling like a family that didn't have cancer invade their lives two months ago.
Then we get the news we came for. The tumor board as a group came to the conclusion that Mike will not have chemo. They are sticking with the Stage 1 diagnosis, which indicates only more frequent screenings rather than anything more invasive after surgery. However, he did not want the port taken out at this time as he would rather wait until after the next colonoscopy and the results of genetic testing if Mike goes through with that.
We left the office with no new information, yet somehow I feel more settled about it now. Maybe it's because I know a team of professionals went over Mike's case and came to their most educated decision. Maybe because it's been three weeks since the last appointment with the oncologist and I had that time to get used to the idea that we have to trust the lab results and the process. Or, more likely, I just NEED to be more settled about it. Fear can be paralyzing, but so can uncertainty to an extent. I don't want to live day to day wondering if there are still cancer cells in Mike's body. I can't live that way.
While Mike's health at this time is better than it has been in months and we are incredibly fortunate that Mike's civilian job has benefits that covered medical bills and paid time off. However, we also count on monthly income from the Air Force. While Mike is unable to physically work on base, he will be able to do some correspondance from home. That will help make up some of the difference. It's a difficult balance. Maybe vacation last week seems like a luxury we can't afford, but there is also a need for normalcy and feeling like a family that didn't have cancer invade their lives two months ago.
Monday, August 16, 2010
Vacation is over
Vacation is over - along with lazy mornings and swimming all day. I registered the kids for school today. I guess that means it's time to get back to some kind of a routine. It's hard to believe how much has happened this summer. So many surprises, so much uncertainty, but so much gratitude too.
Wednesday is our meeting with the oncologist to find out what the Tumor Board came up with in regard to treatment/procedures for Mike. It's difficult to describe how I feel right now. Part of me feels like this is no big deal, nothing to get excited or worried about, but then I think, "isn't that weird - to feel like that?" What we find out on Wednesday will be significant in determining where we go from here. I keep coming back to the phrase "new normal" and I guess that's what this is. You kind of get used to the uncertainty, but not really. Maybe some day I'll figure out how to put that into words that make sense.
It's also a bit strange to have other issues taking center stage right now that are pushing this cancer thing off to the side.
"Yes, it's been quite a summer..." J. Buffett
Wednesday is our meeting with the oncologist to find out what the Tumor Board came up with in regard to treatment/procedures for Mike. It's difficult to describe how I feel right now. Part of me feels like this is no big deal, nothing to get excited or worried about, but then I think, "isn't that weird - to feel like that?" What we find out on Wednesday will be significant in determining where we go from here. I keep coming back to the phrase "new normal" and I guess that's what this is. You kind of get used to the uncertainty, but not really. Maybe some day I'll figure out how to put that into words that make sense.
It's also a bit strange to have other issues taking center stage right now that are pushing this cancer thing off to the side.
"Yes, it's been quite a summer..." J. Buffett
Sunday, August 15, 2010
Vacation
Getting ready to head back home after being gone for 9 days. In some ways it seems like much longer than that. For at least a little while we were able to be "normal" again. The kids swam & swam & swam in the hotel pool, we went to Warren Dunes in Michigan, hit several wineries, visited with family & some friends from college that we haven't seen in about 10 years. They have three daughters and the oldest two are close in age to Cal & Zoey. You'd would have thought they had known each other forever.
In the back of my mind, though, I still had to push away thoughts of Mike's upcoming oncologist appointment. This Wednesday we should find out once and for all if chemo is going to be prescribed. We're doubtful Mike will go through chemo, but we've (& the professionals) been wrong before.
I'm so glad we were able to get away as a family. To reconnect and do things together - just the four of us. Then to have the chance for Mike and I to see Jimmy Buffett in concert last night brought back memories of the other Jimmy concerts we've gone to in the last 17 years. It's funny how songs seem to have different meanings depending on where you are in life.
Back to the real world & all the ups and downs that come with it.
In the back of my mind, though, I still had to push away thoughts of Mike's upcoming oncologist appointment. This Wednesday we should find out once and for all if chemo is going to be prescribed. We're doubtful Mike will go through chemo, but we've (& the professionals) been wrong before.
I'm so glad we were able to get away as a family. To reconnect and do things together - just the four of us. Then to have the chance for Mike and I to see Jimmy Buffett in concert last night brought back memories of the other Jimmy concerts we've gone to in the last 17 years. It's funny how songs seem to have different meanings depending on where you are in life.
Back to the real world & all the ups and downs that come with it.
From August 9
Copied from my facebook page....
Wishing I could up date my blog, but the laptop won't let me sign in so this is the best I can do for now.
Exactly four weeks ago today, Mike had 1/3 of his colon removed. One hour ago he was throwing the kids around in the swimming pool. Yesterday he chased them around a playground. I am overwhelmed once again. Mike's resiliency is nothing short of amazing. When I see the scar, it is an obvious visual reminder of what has happened over the last month and a half, but there are times I find that I have to remind myself that it has only been four weeks and considering it was major abdominal surgery Mike is not yet physically healed.
I'm glad we've had this opportunity to get away for a week. The kids are having a blast - three hours running around with four Bulldogs last night, swimming, playgrounds, etc are wearing them out in a good way. Our family needed this, I think. Maybe more than other vacations we've had in the past. It's nothing exotic, but when our biggest concern is the kids arguing over Burger King vs. McDonalds - Life is Good.
Wishing I could up date my blog, but the laptop won't let me sign in so this is the best I can do for now.
Exactly four weeks ago today, Mike had 1/3 of his colon removed. One hour ago he was throwing the kids around in the swimming pool. Yesterday he chased them around a playground. I am overwhelmed once again. Mike's resiliency is nothing short of amazing. When I see the scar, it is an obvious visual reminder of what has happened over the last month and a half, but there are times I find that I have to remind myself that it has only been four weeks and considering it was major abdominal surgery Mike is not yet physically healed.
I'm glad we've had this opportunity to get away for a week. The kids are having a blast - three hours running around with four Bulldogs last night, swimming, playgrounds, etc are wearing them out in a good way. Our family needed this, I think. Maybe more than other vacations we've had in the past. It's nothing exotic, but when our biggest concern is the kids arguing over Burger King vs. McDonalds - Life is Good.
Thursday, August 5, 2010
August 4
I guess we must be getting on with life considering it's been three days since I posted. A bunch of Mike's co-workers came over last night to stain our deck. Some had been out on Monday to do the pressure washing and then brought reinforcements yesterday to do the actual staining. The deck looks great and we are so grateful for the help. Unfortunately, I may have appeared as less than that yesterday. Over the last couple of days I've had a sore throat that has gotten progressively worse so I wasn't feeling too great yesterday. Hopefully, Mike's co-workers don't think he has an antisocial wife or that I'm not grateful for everything they did - including provide food Monday and Wednesday!
I don't know if stress has finally caught up to me, if it's allergies, sinus infection or just a plain old cold, but I feel rather miserable. Actually, bad enough to see the doctor this afternoon. The biggest reason I don't want to just wait it out is that our vacation starts on Saturday. The last thing I want is to be sick during vacation.
In the meantime I have the typical packing, laundry, list making routine that happens before any vacation. It's nice to just feel normal.
Mike doesn't want to be seen as "the guy with cancer". Besides, it's gone at this point. I don't want to be seen as the woman married to the guy with cancer. We aren't unaware that things can change, but for now we can try to live our lives like we did B.C. (before cancer), but with a little more patience and understanding that comes from going through such a life changing event.
I don't know if stress has finally caught up to me, if it's allergies, sinus infection or just a plain old cold, but I feel rather miserable. Actually, bad enough to see the doctor this afternoon. The biggest reason I don't want to just wait it out is that our vacation starts on Saturday. The last thing I want is to be sick during vacation.
In the meantime I have the typical packing, laundry, list making routine that happens before any vacation. It's nice to just feel normal.
Mike doesn't want to be seen as "the guy with cancer". Besides, it's gone at this point. I don't want to be seen as the woman married to the guy with cancer. We aren't unaware that things can change, but for now we can try to live our lives like we did B.C. (before cancer), but with a little more patience and understanding that comes from going through such a life changing event.
Monday, August 2, 2010
Just another ordinary day
Mike went to work today. This is the first time he will be at work for a full day in five weeks. While he probably won't be able to do the actual job he was originally hired for, just because it's mostly physical, I think he needed to get back to work. Actually, I think we all needed for him to go back to work. I don't mean to say that I haven't been happy having him at home. I have. I love getting to see him in the middle of the day or spending family time together on a Tuesday just because we can. But, I also know he needs to be active. That's just who he is. Hanging around doing a lot of nothing sounds like a great idea until you are actually forced to do it.
Mike will only work two days this week and then the following week we will take the family vacation we weren't sure was even going to happen. After that will be the next doctor appointments and then who knows. At this point, it doesn't actually matter what is going to happen three weeks from now. It took me awhile to get to this point, but I think I'm finally here. Live in the moment, it is what it is, blah blah blah :o)
We will have two more dinners delivered to us this week and then we have asked that they be stopped. I have to say I will miss not having to worry about what to make for dinner. It has never been one of my skills, considering I have difficulty making a meatloaf that doesn't have a consistency of either a loaf of bread or soup. Not having to think about dinner the last few weeks definitely lowered my stress level (thank you again to everyone that kept us fed), but I also know we need to be more self-sufficient again if we're going to move on. I guess next on that list is mowing the lawn...maybe after vacation.
Mike will only work two days this week and then the following week we will take the family vacation we weren't sure was even going to happen. After that will be the next doctor appointments and then who knows. At this point, it doesn't actually matter what is going to happen three weeks from now. It took me awhile to get to this point, but I think I'm finally here. Live in the moment, it is what it is, blah blah blah :o)
We will have two more dinners delivered to us this week and then we have asked that they be stopped. I have to say I will miss not having to worry about what to make for dinner. It has never been one of my skills, considering I have difficulty making a meatloaf that doesn't have a consistency of either a loaf of bread or soup. Not having to think about dinner the last few weeks definitely lowered my stress level (thank you again to everyone that kept us fed), but I also know we need to be more self-sufficient again if we're going to move on. I guess next on that list is mowing the lawn...maybe after vacation.
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