Why is it that this time of year, instead of being peaceful and joyful, becomes so hectic and tense?
This is my third year working the "peak" season answering phones for a local catalog company. Every year I hope it will get easier for Cal to deal with. The first year I worked all nights so was not home much at bedtime. He was only 4 so it was difficult for him to understand. This year he is 6 and I work a mix of days and nights. Now he is upset that I can't always pick him up after school because I'm working. The fact that until about two months ago he went to a sitters house after school two or three afternoons each week doesn't seem to register. He's focused on the fact that for a couple of weeks I was able to pick him up after school every day and now I can't.
Between my job working during "peak" and my two other regular paid jobs something seems to always be neglected. Every year I consider not working peak, but then we would lose the year round benefit of using the fitness center, indoor swim lessons and other activities for the kids. Plus the extra money this time of year doesn't hurt. I am constantly weighing the pros and cons.
I want to feel peace and joy this year, but get so overwhelmed by the other crap that it's hard to find it. I'm anxious about Mike's colonoscopy on Thursday, I'm frustrated at how long the genetic testing is taking and I don't like that my kids feel like I don't have enough time for them. Mike was gone for four days working in Madison this past week/weekend for a big inspection on base. He was out of the house before 4:30 in the morning and either home late or not at all. Cal is getting over bronchitis and I lost my temper with one of his friends yesterday. Then last night was cub scouts for Mike and the kids and a different meeting for me. I miss my family.
Fortunately as of right now we have nothing scheduled for the next three nights. Mike will have to do the colonoscopy prep tomorrow afternoon/evening, which is a tough process, but at least we'll all be home together.
I'm trying not to let the "scanxiety" about the colonoscopy get to me, but it's hard. I don't like feeling scared. Mike says he isn't worried, that nothing could show up that fast, which is probably the case. I'll feel better Thursday after the doc confirms that everything looks good.
In the meantime I continue to try and find moments of peace where I can and see the joy that is around if only I take time to look for it.
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, December 14, 2010
Monday, December 6, 2010
More waiting
It seems like that's all we do now. Wait for test results, wait for different test results, and now wait AGAIN. I don't even know what I should be feeling right now. I want to be angry, I am frustrated, but I also just kind of feel empty.
The latest results on Mike's genetic testing have come back positive for Lynch Syndrome. HOWEVER, the lab that ran this particular test has a history of false positives when it concerns the specific mutations Mike has, which apparently have mutated differently than the majority do in Lynch cases. Yeah, I'm confused. So, we wait again. This time Mayo is taking the results from this potential false positive to confirm the actual mutations.
The genetic counselor indicated today that Mike's is the most complicated case she has dealt with to date. Lucky us.
I'm feeling a bit overwhelmed by life in general anyway and really wanted to move on with this. Not yet, I guess. Sometimes it's hard to take things day by day and I really need to start focusing on hour by hour. I know I'm on the verge of burning out, but I'm not quite sure how to take care of myself while making sure I take care of all of my other obligations. I can't be the only person to feel like this and I try to remind myself of how much better I have it than so many other people. I don't have room to complain.
I haven't really vented for awhile so maybe this was a good thing tonight. For my family at least. If I can get it out on "paper" maybe I won't be as quick to take it out on them.
The latest results on Mike's genetic testing have come back positive for Lynch Syndrome. HOWEVER, the lab that ran this particular test has a history of false positives when it concerns the specific mutations Mike has, which apparently have mutated differently than the majority do in Lynch cases. Yeah, I'm confused. So, we wait again. This time Mayo is taking the results from this potential false positive to confirm the actual mutations.
The genetic counselor indicated today that Mike's is the most complicated case she has dealt with to date. Lucky us.
I'm feeling a bit overwhelmed by life in general anyway and really wanted to move on with this. Not yet, I guess. Sometimes it's hard to take things day by day and I really need to start focusing on hour by hour. I know I'm on the verge of burning out, but I'm not quite sure how to take care of myself while making sure I take care of all of my other obligations. I can't be the only person to feel like this and I try to remind myself of how much better I have it than so many other people. I don't have room to complain.
I haven't really vented for awhile so maybe this was a good thing tonight. For my family at least. If I can get it out on "paper" maybe I won't be as quick to take it out on them.
Tuesday, November 9, 2010
Reminders
Last week there was an accident in town. A horrible, tragic accident in which a woman was killed by a car driven by another local woman who was pulling out of the library parking lot. Speed was not involved, it was just a horrible accident.
The funeral is today for the woman, who was only 50 years old or so, and her family and friends are grieving for their loss while trying to make sense of it all. I started thinking about the woman driving the car and how she will have to live with this for the rest of her life. How something so unexpected and so sudden can change your life forever.
As I was thinking about these two women, the feelings I had when Dr Dachman said, "Mike, you have cancer" came rushing back. My chest tightened, I started breathing more rapidly and could picture so clearly the doctor, Mike's face and our hands holding onto each other with everything we had.
Just when it seems that those feelings of fear and helplessness are finally gone something reminds me of what that day felt like and it all comes right back.
The funeral is today for the woman, who was only 50 years old or so, and her family and friends are grieving for their loss while trying to make sense of it all. I started thinking about the woman driving the car and how she will have to live with this for the rest of her life. How something so unexpected and so sudden can change your life forever.
As I was thinking about these two women, the feelings I had when Dr Dachman said, "Mike, you have cancer" came rushing back. My chest tightened, I started breathing more rapidly and could picture so clearly the doctor, Mike's face and our hands holding onto each other with everything we had.
Just when it seems that those feelings of fear and helplessness are finally gone something reminds me of what that day felt like and it all comes right back.
Monday, October 25, 2010
Lynch Syndrome
After hearing about and reading bits and pieces about Lynch Syndrome, Mike found a website that helps to explain it more clearly. While we don't know for a fact this is why Mike got colon cancer, it does look likely based on the previous test results. One interesting fact about Lynch is that an estimated 600,000 people in the US have it, but only 5% know it.
Mike gave the lab three more vials of blood this morning to send to Mayo. The testing done now should confirm if Mike has Lynch Syndrome. So, another 2-4 weeks of waiting and wondering and continuing to live our lives.
Thursday, October 21, 2010
Apparently it's not a "weird, freak thing"
I'm pissed off. That about sums it up right now. The genetic counselor called and said Mike needs to have more blood drawn. Apparently the results of the genetic testing indicate that the two of the proteins that are made from mismatched repair genes are missing. "If the test indicates that one of these proteins is missing or levels are low, you may have hereditary nonpolyposis colorectal cancer (HNPCC)."
Basically, it means this was not a "weird freak thing". Mike wasn't just one of X out of 100 that get cancer for no apparent reason. That makes me incredibly angry. Of course, I knew this was a possibility, but when the last 8 weeks have felt so "normal", it's a big slap in the face.
So...now we wait again. This time to test for alterations in the most common genes involved in HNPCC. Once the blood is sent to Mayo we're looking at another two weeks minimum at which time we will again meet with Laura, our genetic counselor. Another two weeks of not having a damn clue as to what is going on. I hate that along with the anger, the fear is back too.
I know we've already come through a lot. In many ways stronger than we were. I also know we'll get through whatever comes next, but that doesn't necessarily make the now any easier.
Basically, it means this was not a "weird freak thing". Mike wasn't just one of X out of 100 that get cancer for no apparent reason. That makes me incredibly angry. Of course, I knew this was a possibility, but when the last 8 weeks have felt so "normal", it's a big slap in the face.
So...now we wait again. This time to test for alterations in the most common genes involved in HNPCC. Once the blood is sent to Mayo we're looking at another two weeks minimum at which time we will again meet with Laura, our genetic counselor. Another two weeks of not having a damn clue as to what is going on. I hate that along with the anger, the fear is back too.
I know we've already come through a lot. In many ways stronger than we were. I also know we'll get through whatever comes next, but that doesn't necessarily make the now any easier.
Tuesday, October 5, 2010
Full Circle
I just realized it's been a month since I last posted. Yep, life keeps going.
Mike started back with the Air Force this past weekend - 15 weeks after the Air Force PT test that prompted his initial visit to the doctor. In the last month we found out that one of the two genetic tests came back clear, but we're still waiting on the results for the second one. Mike saw our family doctor last week and the iron levels in his blood are back to normal so he can stop taking the iron supplement. No more prescription meds, now it's just baby aspirin and fish oil.
It's strange how we went through so much and now there are times where it seems as if nothing happened. Cancer is no longer something I think about constantly. It still comes up every day in some form or another, but that's just part of who we are now and it doesn't seem odd anymore.
My way of thinking has changed some. I find that I stop more often and remind myself of what is important. Do I really need to finish sending "one more email" or is playing "restaurant" with my daughter more important. The times when I make the more "convenient" choice rather than the right choice, the voice reminding me to rethink things is louder than it ever was before.
Mike started back with the Air Force this past weekend - 15 weeks after the Air Force PT test that prompted his initial visit to the doctor. In the last month we found out that one of the two genetic tests came back clear, but we're still waiting on the results for the second one. Mike saw our family doctor last week and the iron levels in his blood are back to normal so he can stop taking the iron supplement. No more prescription meds, now it's just baby aspirin and fish oil.
It's strange how we went through so much and now there are times where it seems as if nothing happened. Cancer is no longer something I think about constantly. It still comes up every day in some form or another, but that's just part of who we are now and it doesn't seem odd anymore.
My way of thinking has changed some. I find that I stop more often and remind myself of what is important. Do I really need to finish sending "one more email" or is playing "restaurant" with my daughter more important. The times when I make the more "convenient" choice rather than the right choice, the voice reminding me to rethink things is louder than it ever was before.
Monday, September 6, 2010
The missing chapter
Summer is officially over, I guess, considering today is Labor Day. Had a great weekend with family and friends. But, now we're trying to get back into the school year routine of too much to do and too little time.
Where did the summer go? I've asked myself that in years past, but this year was obviously different. It really feels as though I lost two months of my (our) life. The other day while I was hacking through pumpkin vines in my garden, Mike was trying to get the shed somewhat organized. We started talking about toys we should get rid of because the kids are getting too big for them. I made a comment about how the kids hardly even used the swing set this year. That's when it hit me. I honestly don't know how much the kids used the swing set this year. There is a significant block of time that seems to just be gone. Selective memory, maybe? I don't know, but it's a really odd feeling. To not remember what my kids did this summer is a bit unsettling.
I remember the big stuff: tubing and Great America before surgery and our family vacation three weeks after surgery. What I don't remember is everything in between. I can go back and read my blog, but it doesn't feel real. When I see Mike hanging upside down on the monkey bars or wrestling with the kids on the floor, it doesn't seem possible that he has an angry looking scar hidden under his clothing. That just over two months ago our world stopped and everything we thought we knew about our future was shaken to its core.
I haven't cried in a long time, but writing this brings some of the feelings back. Being reminded of the generosity of others and hoping I can return those favors some day. Indescribable gratitude that Mike is here with us and that he is strong and healthy. But, I'm also reminded of the fear and uncertainty. The ups and downs of having hope one minute and worrying the next.
The way things are going right now it seems impossible that we will hear anything but good news from the genetic counselor once the results are in. I want to hear that it was just some weird, freak, unexplainable thing that will likely never happen again. Hopeful? Yep.
Where did the summer go? I've asked myself that in years past, but this year was obviously different. It really feels as though I lost two months of my (our) life. The other day while I was hacking through pumpkin vines in my garden, Mike was trying to get the shed somewhat organized. We started talking about toys we should get rid of because the kids are getting too big for them. I made a comment about how the kids hardly even used the swing set this year. That's when it hit me. I honestly don't know how much the kids used the swing set this year. There is a significant block of time that seems to just be gone. Selective memory, maybe? I don't know, but it's a really odd feeling. To not remember what my kids did this summer is a bit unsettling.
I remember the big stuff: tubing and Great America before surgery and our family vacation three weeks after surgery. What I don't remember is everything in between. I can go back and read my blog, but it doesn't feel real. When I see Mike hanging upside down on the monkey bars or wrestling with the kids on the floor, it doesn't seem possible that he has an angry looking scar hidden under his clothing. That just over two months ago our world stopped and everything we thought we knew about our future was shaken to its core.
I haven't cried in a long time, but writing this brings some of the feelings back. Being reminded of the generosity of others and hoping I can return those favors some day. Indescribable gratitude that Mike is here with us and that he is strong and healthy. But, I'm also reminded of the fear and uncertainty. The ups and downs of having hope one minute and worrying the next.
The way things are going right now it seems impossible that we will hear anything but good news from the genetic counselor once the results are in. I want to hear that it was just some weird, freak, unexplainable thing that will likely never happen again. Hopeful? Yep.
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