Time for the annual CT results. Last week Mike had his scan and this afternoon we meet with the oncologist to go over the results. We aren't anticipating anything out of the ordinary, but just in case, the kids will be at a friend's house after school so I can also go to the appointment. Mike's CEA level is at 2.5 - anything below 5 is considered normal. However, I don't put a lot of faith in those numbers considering his CEA was at 0 when he was originally diagnosed with cancer.
It's hard to believe how different things were two years ago. Mike wasn't feeling great, mostly run down and tired. What a shock to find out he had cancer. Since then life has evened out for the most part in regard to Mike's health. Even to the point of taking things for granted again. I guess on one hand that's good, it means we aren't living in fear. On the other hand if anything positive came out of the experience it was the realization of how fortunate and blessed we really are, which we should never take for granted.
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, May 29, 2012
All in the Family
It's always interesting how opportunities present themselves. A couple of months ago, Mike attend the funeral of one of his uncles (his mother's half-brother). While there he had a chance to talk to another uncle (his mother's full-brother) and tell him about the subtotal colectomy he had in December and to give him some information about Lynch Syndrome. His uncle had no idea Mike had surgery in December or that he had been diagnosed with Lynch. Mike's aunt and uncle had never heard of Lynch.
Due to this conversation, Mike's uncle decided to be tested for Lynch and, ufortunately, he tested positive. Fortunately, now he knows and can take all the precautions and do all the surveilence he needs to best protect himself. He also has two daughters who will need to decide if they will also be tested. Had Mike's other uncle not passed away, the conversation never would have happened.
Update:
We have now found out that one of Mike's cousins also has tested positive. I am sad that they are finding themselves in this situation, but relieved that they know and that the entire family is being proactive in making sure they do everything they can to stay on top of this thing. Her sister is going to be tested next week so there is still more waiting for them. I pray her results are negative.
We are still hoping and praying that Mike's siblings will be tested and not wait until it's too late. A diagnosis of Lynch Syndrome beats a diagnosis of cancer.
Due to this conversation, Mike's uncle decided to be tested for Lynch and, ufortunately, he tested positive. Fortunately, now he knows and can take all the precautions and do all the surveilence he needs to best protect himself. He also has two daughters who will need to decide if they will also be tested. Had Mike's other uncle not passed away, the conversation never would have happened.
Update:
We have now found out that one of Mike's cousins also has tested positive. I am sad that they are finding themselves in this situation, but relieved that they know and that the entire family is being proactive in making sure they do everything they can to stay on top of this thing. Her sister is going to be tested next week so there is still more waiting for them. I pray her results are negative.
We are still hoping and praying that Mike's siblings will be tested and not wait until it's too late. A diagnosis of Lynch Syndrome beats a diagnosis of cancer.
Friday, January 6, 2012
Better days
Four weeks post-surgery and Mike is doing exceptionally well! He has been going to work a few hours each day since Tuesday. For a guy who works outdoors for a living, being cooped up in the house "recovering" was really getting to him. He probably does more than he should, but if he didn't that just wouldn't be Mike. Yesterday he even attempted to go hunting. Having weather in the mid-40's was enough incentive for him to go out in search of venison. Just being outside for a few hours walking around in nature wore him out, but as sore or tired as he may have been I'm sure he had no regrets.
Life without a colon has been less eventful than we anticipated. We have our "spare bathroom" in the basement, but the kids have only needed to use it twice. Mike is cautious about what he eats and has gradually been adding in vegetables and more fiber. Maybe more information than anyone would want to know, but essentially if he eats a salad it comes out looking like a salad! Because of that, he is going to talk to a dietician. It seems reasonable to think that he is missing out on certain nutrients simply because his body doesn't have time to absorb them. I'm not sure what the long-term effects of living without a colon will be, but it can't possibly be as bad as getting cancer again.
For the time being Mike continues to heal, we juggle the everyday family things like school, homework, Scouts, ballet and what to have for dinner. Sometimes mundane is good.
Life without a colon has been less eventful than we anticipated. We have our "spare bathroom" in the basement, but the kids have only needed to use it twice. Mike is cautious about what he eats and has gradually been adding in vegetables and more fiber. Maybe more information than anyone would want to know, but essentially if he eats a salad it comes out looking like a salad! Because of that, he is going to talk to a dietician. It seems reasonable to think that he is missing out on certain nutrients simply because his body doesn't have time to absorb them. I'm not sure what the long-term effects of living without a colon will be, but it can't possibly be as bad as getting cancer again.
For the time being Mike continues to heal, we juggle the everyday family things like school, homework, Scouts, ballet and what to have for dinner. Sometimes mundane is good.
Sunday, January 1, 2012
A New Year
I am cautiously optimistic about 2012.
At the start of 2011 I was more than happy to put 2010 behind me and fully expected a better year. After all, how much worse could it get than Mike having cancer & being diagnosed with Lynch Syndrome? Then in September my Mom died.
Today I started going back through Facebook to the weeks leading up to Mom's death. At the time I wasn't blogging about it, but was putting it out on FB, making lots of phone calls and talking with my family. Now, I regret not blogging. I am trying to figure out how best to transfer all of those posts I made, in addition to the responses from the many, many people who supported my family and me during that time. I was glad to see the posts are all still there and it is just be a matter of making the time to organize them and save them somewhere besides FB.
I had a rough time with the whole New Year's thing. One of my life-long friends whose husband died unexpectedly earlier in 2011, put into words what I was thinking when she wrote, "kinda sad leaving 2011 behind because Brian was still part of that year". I know exactly what she means.
I am also concerned about Mike's family. So far none of his siblings have been tested for Lynch Syndrome. Mike and I have talked about offering to pay for the blood test, which is all they need to determine whether they have Lynch or not. There is also the issue of cousins and uncles that may also be affected by this. It's a struggle for me to understand their fears about insurance with the fact a simple blood test will either "let them off the hook" or allow them to be as prepared as possible to deal with Lynch head on.
I know 2012 will have both good days and bad and sometimes it's a matter of writing or saying what I WANT to be feeling rather than what I am actually feeling. Not sure if that's me wanting everyone to think I'm just fine or if, in someway, I know I am OK and things will get better.
Regardless, it'll be interesting to see what happens.
At the start of 2011 I was more than happy to put 2010 behind me and fully expected a better year. After all, how much worse could it get than Mike having cancer & being diagnosed with Lynch Syndrome? Then in September my Mom died.
Today I started going back through Facebook to the weeks leading up to Mom's death. At the time I wasn't blogging about it, but was putting it out on FB, making lots of phone calls and talking with my family. Now, I regret not blogging. I am trying to figure out how best to transfer all of those posts I made, in addition to the responses from the many, many people who supported my family and me during that time. I was glad to see the posts are all still there and it is just be a matter of making the time to organize them and save them somewhere besides FB.
I had a rough time with the whole New Year's thing. One of my life-long friends whose husband died unexpectedly earlier in 2011, put into words what I was thinking when she wrote, "kinda sad leaving 2011 behind because Brian was still part of that year". I know exactly what she means.
I am also concerned about Mike's family. So far none of his siblings have been tested for Lynch Syndrome. Mike and I have talked about offering to pay for the blood test, which is all they need to determine whether they have Lynch or not. There is also the issue of cousins and uncles that may also be affected by this. It's a struggle for me to understand their fears about insurance with the fact a simple blood test will either "let them off the hook" or allow them to be as prepared as possible to deal with Lynch head on.
I know 2012 will have both good days and bad and sometimes it's a matter of writing or saying what I WANT to be feeling rather than what I am actually feeling. Not sure if that's me wanting everyone to think I'm just fine or if, in someway, I know I am OK and things will get better.
Regardless, it'll be interesting to see what happens.
Monday, December 12, 2011
Progress
Mike was up a lot during the night, but now is on oral pain meds for the first time and those have pretty much knocked him out. He'll get a about a 10 minute nap before the Surgical Team shows up. The first Med student showed up around 5:30 and then a group of about 6 more students showed up at 6:30. The surgeon is making his way down the hall now with his entourage.
If the oral pain meds control his pain OK then the epidural will be removed today along with the catheter. Full liquids are next on the meal plan and if that goes well, he can also get rid of the IV. Things are definitely heading in the right direction.
Our personal goal was to be out of here on Wednesday. So far so good. It helps when Mike has such an amazing attitude about the entire thing. He is so upbeat and positive about the process and has kept his sense of humor in tact. He continues to amaze me, although after 18 and a half years I shouldn't be surprised.
Yesterday he was joking that I had wanted a few days away just the two of us - laying around in bed, room service. I added that the tropical air was a nice touch too since he has the thermostat set to about 78 in his room.
Going through this together has brought us closer, I think. Just when I think things have never been better, it gets better. It's funny how love grows and gets deeper even when you've been together as long as we have. Much of the last two years has not been fun, but even more of it has been amazing. Mike supported me during the death of my Mom while dealing with his own grief. It's give and take, but there's no keeping score. I once read something about how in a relationship one person always has to love the other person a little bit more. I don't think I agree with that, but there has to be a willingness to love the other person enough to put your own stuff aside because they need you more than you need them at that moment. Although, I'm not sure "need" is the right word either.
Mike's recovery will be slow. Although his visible wounds will heal and the pain will go away, it will take much longer for his digestive system to find it's new normal. Like everything else, we'll deal with things as they come and know that while there may be some set backs and more than a little frustration, we will come out of this stronger than ever.
If the oral pain meds control his pain OK then the epidural will be removed today along with the catheter. Full liquids are next on the meal plan and if that goes well, he can also get rid of the IV. Things are definitely heading in the right direction.
Our personal goal was to be out of here on Wednesday. So far so good. It helps when Mike has such an amazing attitude about the entire thing. He is so upbeat and positive about the process and has kept his sense of humor in tact. He continues to amaze me, although after 18 and a half years I shouldn't be surprised.
Yesterday he was joking that I had wanted a few days away just the two of us - laying around in bed, room service. I added that the tropical air was a nice touch too since he has the thermostat set to about 78 in his room.
Going through this together has brought us closer, I think. Just when I think things have never been better, it gets better. It's funny how love grows and gets deeper even when you've been together as long as we have. Much of the last two years has not been fun, but even more of it has been amazing. Mike supported me during the death of my Mom while dealing with his own grief. It's give and take, but there's no keeping score. I once read something about how in a relationship one person always has to love the other person a little bit more. I don't think I agree with that, but there has to be a willingness to love the other person enough to put your own stuff aside because they need you more than you need them at that moment. Although, I'm not sure "need" is the right word either.
Mike's recovery will be slow. Although his visible wounds will heal and the pain will go away, it will take much longer for his digestive system to find it's new normal. Like everything else, we'll deal with things as they come and know that while there may be some set backs and more than a little frustration, we will come out of this stronger than ever.
Sunday, December 11, 2011
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.
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.
Saturday, December 10, 2011
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.
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.
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