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.
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.
Friday, December 24, 2010
Sunday, December 19, 2010
Merry Christmas to Us!
On Thursday, Mike had his first colonoscopy post surgery. What a different experience from the first time he had this procedure!
About 30 minutes after being taken in for the procedure, he was brought back to the recovery room where I was waiting. Nurses made eye contact with me, told me he did just fine, said he could have something to eat after he woke up and didn't close the curtains and shut the door when they left. That was all it took to tell me that the doc didn't find anything. Once Dr Dachman came in to talk to us he affirmed that the scope was clear. He did take some tissue from the reattachment site to be biopsied, but that is just a standard procedure and he doesn't anticipate anything but a negative result for that. He also said Mike doesn't need another colonoscopy until next December.
Later in the day the genetic counselor called and told us not to hold our breath for results from Mayo. Things are moving slow and with Christmas coming it will be after the first of the year before we know anything more than we do now. Not sure what it means that things are moving slow, but at this point I don't really care.
All that really matters right now is that Mike is still cancer free.
About 30 minutes after being taken in for the procedure, he was brought back to the recovery room where I was waiting. Nurses made eye contact with me, told me he did just fine, said he could have something to eat after he woke up and didn't close the curtains and shut the door when they left. That was all it took to tell me that the doc didn't find anything. Once Dr Dachman came in to talk to us he affirmed that the scope was clear. He did take some tissue from the reattachment site to be biopsied, but that is just a standard procedure and he doesn't anticipate anything but a negative result for that. He also said Mike doesn't need another colonoscopy until next December.
Later in the day the genetic counselor called and told us not to hold our breath for results from Mayo. Things are moving slow and with Christmas coming it will be after the first of the year before we know anything more than we do now. Not sure what it means that things are moving slow, but at this point I don't really care.
All that really matters right now is that Mike is still cancer free.
Tuesday, December 14, 2010
Peace & Joy?
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.
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.
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.
Thursday, August 26, 2010
Maybe just a freak thing
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.
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.
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.
Saturday, July 31, 2010
Whoo-hoo! July is OVER!
So, July (& the last five days of June) goes down as one of the more interesting months of our lives. Terrifying, hopeful, uncertain, overwhelmed, faithful, supportive, loving, horrible, and just about any other "feeling" word you can think of. It seems I've been through them all.
On the outside Mike is so positive and upbeat & looks great. The "same ol' Mike", albeit more tired. On the inside though, he must be going through most of what I have, but on an even larger scale. This past month has made us stronger in our relationship. It was pretty damn good to begin with, but going through something like this really puts things into perspective. It's kind of cliche, but it's true.
August will be a fresh start of our "new normal". There will be more uncertainty & waiting and more wondering what the future will hold, but we shouldn't have another shock like the one that started this whole thing. We kind of have an idea of the direction this could take. Two out of three of them aren't aren't great. We're praying for the other one.
On the outside Mike is so positive and upbeat & looks great. The "same ol' Mike", albeit more tired. On the inside though, he must be going through most of what I have, but on an even larger scale. This past month has made us stronger in our relationship. It was pretty damn good to begin with, but going through something like this really puts things into perspective. It's kind of cliche, but it's true.
August will be a fresh start of our "new normal". There will be more uncertainty & waiting and more wondering what the future will hold, but we shouldn't have another shock like the one that started this whole thing. We kind of have an idea of the direction this could take. Two out of three of them aren't aren't great. We're praying for the other one.
Friday, July 30, 2010
July 30
What a month this has been! Reflecting back it's like three lifetimes crammed into 5 weeks. I'm so glad I decided to start the blog. I can remember what it felt like to be told Mike had cancer, but I won't always be able to bring that feeling back. Kind of like childbirth, I guess. If you could really remember how much pain labor and delivery is, everyone would be an only child.
Through all of this I have been reminded over and over again how fortunate I am to have the life I do. Friends, family, acquaintances, even people we have never met putting forth so much effort to support the four of us. I look at Mike and see how much he loves me and the kids. I know he'll do whatever it takes to be here with us.
Right now we're in a pretty good place with no more news expected until August 18. After that we'll see where we go next. In the meantime I'll try not to think about the uncertainty that surrounds us and instead focus on what I am certain about. I love my husband, my kids, family & friends and appreciate all they bring to my life.
Now I'm headed upstairs to watch a movie & have some ice cream with the family.
Through all of this I have been reminded over and over again how fortunate I am to have the life I do. Friends, family, acquaintances, even people we have never met putting forth so much effort to support the four of us. I look at Mike and see how much he loves me and the kids. I know he'll do whatever it takes to be here with us.
Right now we're in a pretty good place with no more news expected until August 18. After that we'll see where we go next. In the meantime I'll try not to think about the uncertainty that surrounds us and instead focus on what I am certain about. I love my husband, my kids, family & friends and appreciate all they bring to my life.
Now I'm headed upstairs to watch a movie & have some ice cream with the family.
Thursday, July 29, 2010
Lymph Nodes really are clear!
Found out today from the surgeon that the second pathology on the nodes confirmed they were in fact clear of any cancer cells! At least that piece can be put to rest now and for that I am thankful & in a much better mood than I have been the last few days.
Today we received paperwork in the mail from the genetic counselor. Information such as maternal & paternal grandparents, parents & siblings, their current age & age of cancer diagnosis if applicable. This information will then be reviewed by the genetic counselor who will then determine if Mike should come in for genetic counseling. We'll get that in the mail tomorrow and then wait. Again.
We figure the rest of our lives will be spent waiting for one thing or another, but I imagine that will eventually become routine. Another "new normal".
Until then, I'm going to focus on figuring out what we're going to do on our family vacation in August.
Today we received paperwork in the mail from the genetic counselor. Information such as maternal & paternal grandparents, parents & siblings, their current age & age of cancer diagnosis if applicable. This information will then be reviewed by the genetic counselor who will then determine if Mike should come in for genetic counseling. We'll get that in the mail tomorrow and then wait. Again.
We figure the rest of our lives will be spent waiting for one thing or another, but I imagine that will eventually become routine. Another "new normal".
Until then, I'm going to focus on figuring out what we're going to do on our family vacation in August.
Wednesday, July 28, 2010
Better today - sort of
Afternoon...
Warning to those of you still following the blog - I'm just doing more complaining today...
I seemed to be the only person having a hard time yesterday dealing with the great news about Mike not having to go through chemo. Everyone who has been on this journey with us was so excited to hear it, but I just couldn't get there. What is wrong with me that I'm not happier about the news? I've been struggling since yesterday to try and make sense out of what I actually am feeling. Some of it I'm almost afraid to put on the blog because of how it might be interpreted. Maybe today will just be saved as a draft. We'll see.
Of course I don't want Mike to go through anymore than he has to and chemo would certainly be a rough road. However, a small part of me wishes we were dealing with Stage II, then Mike could get chemo and we would know there is nothing left of the damn cancer. How horrible of a thought is that??? To wish my husband had Stage II cancer instead of Stage I? By being Stage I and not having any additional treatment available there is a lingering concern that all of the cancer cells from the polyp were not removed. I know he'll have frequent colonoscopies and there is talk of doing a PET scan to check other areas of his body, but I want this thing fixed NOW. I don't want another 2 or 3 or 6 months of waiting around for more answers. I guess I need to learn how to deal with the information I have at the moment and move on. Easier said than done.
There is so much out there about not living in fear of cancer once you've gone through it. I guess I'm not there though. I'm fearful about cancer cells left behind from the polyp. I don't want to spend the rest of our lives afraid of something that may or may not come back. I'll get there eventually I imagine - just need to have more faith. In the meantime I'm working on getting through this weird loneliness I feel because I'm not as excited as everyone else.
Evening...
I guess I'll post this anyway. I'm feeling a bit better than I was earlier and I need to keep reminding myself that this is a process. All of the feelings I have are OK to have - maybe even "normal". Without saying it outright, Mike made me realize I'm also taking this frustration with myself & the situation out on the kids even though that's the last thing I want to be doing. When we first had the diagnosis, we spent the next two weeks leading up to surgery by spending as much quality time together as we could. We had a lot of fun despite what was looming just ahead. I need to go back to that and enjoy this time we have before the next scheduled doctor appointment in mid-August. Instead of focusing on all that I am afraid of and have no control over, I should be focusing on what's most important. Mike is here, surgery was successful, we have an outstanding support system, our kids are happy, our faith is strong and we will continue to fight until we win this battle.
Warning to those of you still following the blog - I'm just doing more complaining today...
I seemed to be the only person having a hard time yesterday dealing with the great news about Mike not having to go through chemo. Everyone who has been on this journey with us was so excited to hear it, but I just couldn't get there. What is wrong with me that I'm not happier about the news? I've been struggling since yesterday to try and make sense out of what I actually am feeling. Some of it I'm almost afraid to put on the blog because of how it might be interpreted. Maybe today will just be saved as a draft. We'll see.
Of course I don't want Mike to go through anymore than he has to and chemo would certainly be a rough road. However, a small part of me wishes we were dealing with Stage II, then Mike could get chemo and we would know there is nothing left of the damn cancer. How horrible of a thought is that??? To wish my husband had Stage II cancer instead of Stage I? By being Stage I and not having any additional treatment available there is a lingering concern that all of the cancer cells from the polyp were not removed. I know he'll have frequent colonoscopies and there is talk of doing a PET scan to check other areas of his body, but I want this thing fixed NOW. I don't want another 2 or 3 or 6 months of waiting around for more answers. I guess I need to learn how to deal with the information I have at the moment and move on. Easier said than done.
There is so much out there about not living in fear of cancer once you've gone through it. I guess I'm not there though. I'm fearful about cancer cells left behind from the polyp. I don't want to spend the rest of our lives afraid of something that may or may not come back. I'll get there eventually I imagine - just need to have more faith. In the meantime I'm working on getting through this weird loneliness I feel because I'm not as excited as everyone else.
Evening...
I guess I'll post this anyway. I'm feeling a bit better than I was earlier and I need to keep reminding myself that this is a process. All of the feelings I have are OK to have - maybe even "normal". Without saying it outright, Mike made me realize I'm also taking this frustration with myself & the situation out on the kids even though that's the last thing I want to be doing. When we first had the diagnosis, we spent the next two weeks leading up to surgery by spending as much quality time together as we could. We had a lot of fun despite what was looming just ahead. I need to go back to that and enjoy this time we have before the next scheduled doctor appointment in mid-August. Instead of focusing on all that I am afraid of and have no control over, I should be focusing on what's most important. Mike is here, surgery was successful, we have an outstanding support system, our kids are happy, our faith is strong and we will continue to fight until we win this battle.
Tuesday, July 27, 2010
No Chemo
Mike & I just got back from meeting with the oncologist. Based on the original findings, Mike is rated at a T2,N0 - or Stage 1 colon cancer. That alone is HUGE considering there was some time spent thinking he was Stage 3, but hoping for Stage 2. We still don't have the results of the second biopsy that was done on the nodes, but Dr Arbaje didn't seem overly concerned about that. Apparently, I'm the only one that is. For some reason I'm having a hard time just accepting things as they are and I wish I knew why.
Actually, I think I do know. I think I was hoping for a concrete answer, which I should have known wouldn't happen based on the ups and downs of this past month. I wanted to hear "this is the treatment, it will take this long and we will follow-up with scheduled screenings". Instead we were told that while the main tumor that was removed and the surrounding areas are no longer an issue, the polyp that was removed from the lower end of Mike's colon and tested positive is of concern. However, because Mike is only Stage 1, chemo is not an option despite concern there may be cancer cells left from the polyp. In addition, there is still the genetic counseling and subsequent testing to be done at a later date.
I am absolutely thankful the surgery went so well and the tumor is gone and it appears the lymph nodes were not involved so Mike won't have to go through the horror of chemo. I guess I'm struggling with not having a specific plan. You'd think I'd have learned by now - it is what it is.
Actually, I think I do know. I think I was hoping for a concrete answer, which I should have known wouldn't happen based on the ups and downs of this past month. I wanted to hear "this is the treatment, it will take this long and we will follow-up with scheduled screenings". Instead we were told that while the main tumor that was removed and the surrounding areas are no longer an issue, the polyp that was removed from the lower end of Mike's colon and tested positive is of concern. However, because Mike is only Stage 1, chemo is not an option despite concern there may be cancer cells left from the polyp. In addition, there is still the genetic counseling and subsequent testing to be done at a later date.
I am absolutely thankful the surgery went so well and the tumor is gone and it appears the lymph nodes were not involved so Mike won't have to go through the horror of chemo. I guess I'm struggling with not having a specific plan. You'd think I'd have learned by now - it is what it is.
Monday, July 26, 2010
Meeting the next "team member"
Tomorrow Mike and I will meet with Dr Arbaje, the oncologist. Don't really have any idea of what to expect because it could realistically be just about anything. Hopefully we will find out if the lymph nodes are in fact clear, or if pathology found something that had been missed before. I feel like I'm going in circles sometimes. It could be this or it could be that.
It's funny, though, how life really does just go on again. Here we are dealing with what is easily the biggest crisis of our lives, but honestly, it does become the "new normal". We took the kids to the pool today, Cal had Cub Scouts tonight, we ate a great dinner that, once again, someone else made for us. Mike is worn out tonight though. Swimming took more out of him that maybe he thought it would and as far as the kids are concerned, "daddy is back". With the staples out, Mike driving again, etc it's easy for Cal & Zoey to forget about the last month.
I don't like waiting & wondering what the news will be tomorrow, but it can't possibly be worse than what we heard on June 25. So, I'll hold on to that and know that once again, we will get through whatever comes next.
It's funny, though, how life really does just go on again. Here we are dealing with what is easily the biggest crisis of our lives, but honestly, it does become the "new normal". We took the kids to the pool today, Cal had Cub Scouts tonight, we ate a great dinner that, once again, someone else made for us. Mike is worn out tonight though. Swimming took more out of him that maybe he thought it would and as far as the kids are concerned, "daddy is back". With the staples out, Mike driving again, etc it's easy for Cal & Zoey to forget about the last month.
I don't like waiting & wondering what the news will be tomorrow, but it can't possibly be worse than what we heard on June 25. So, I'll hold on to that and know that once again, we will get through whatever comes next.
Sunday, July 25, 2010
Ready to get on with it
I debated about updating the blog over the last few days while I was away for a long weekend with friends. I decided against it for a few reasons. Probably most importantly was that I didn't NEED to write things down this weekend. Thanks to Michelle & Maureen I could pretend that life was normal for a few days. Not that my normal life includes hitting multiple wineries in two days and experiencing an incredible concert by one of my favorite singers. I am grateful to both of them for humoring me when I mentioned anything about our "cancer situation", which I REALLY tried not to do. Good wine, good food & girl time was just what I needed to recharge.
Being in a small venue (maybe 300-500 people) to hear Nadirah Shakoor sing was amazing. She is beautiful inside and out, graceful & gracious & has one of the most amazing voices I have ever heard. There were a few times I really wished Mike was with me, especially during certain songs, but I didn't let those thoughts get in the way of appreciating the moment.
I also am incredibly thankful that I have a husband who encouraged us to go despite everything else that is going on. More.
I'm ready to get on with it. We meet with the oncologist on Tuesday and go from there. Right now I am feeling more than "cautiously optimistic".
Being in a small venue (maybe 300-500 people) to hear Nadirah Shakoor sing was amazing. She is beautiful inside and out, graceful & gracious & has one of the most amazing voices I have ever heard. There were a few times I really wished Mike was with me, especially during certain songs, but I didn't let those thoughts get in the way of appreciating the moment.
I also am incredibly thankful that I have a husband who encouraged us to go despite everything else that is going on. More.
I'm ready to get on with it. We meet with the oncologist on Tuesday and go from there. Right now I am feeling more than "cautiously optimistic".
Wednesday, July 21, 2010
An outlet
It's hard to believe that one month ago today Mike went to see Dr Kramer because he was feeling tired and worn out. In some ways it feels like a lifetime ago rather than just a few weeks. When I read back over earlier posts it's almost as if I'm reading about someone else's life.
A couple of days ago I decided to add a counter to the blog. I had been hearing from a lot of people that they were reading it or knew of people that were reading it. On one hand I'm amazed that there are so many people reading this thing. On the other hand it just confirms how important Mike is to so many people.
This blog started as a way for me to remember everything and ended up as a therapy of sorts. A way to kind of purge myself of some of the fear, anger, uncertainty, loneliness & frustration that sometimes seems to take over. I figure if I can put it down in "writing" maybe I won't take it out so much on those I love most. Won't complain as much, etc. If people want to read about my complaining, fear, anger, etc. that's up to them. At least I'm not forcing it on anyone. Most of all Mike and the kids.
Sometimes I wonder how I can possibly feel lonely. I think part of it is that, from my current perspective, everyone else has their own lives to lead. "Normal" lives that aren't surrounded with so many unknowns. That was us just a month ago. We always had a pretty good idea of what was going to happen next. Sure the routine can get monotonous sometimes and things come up now and then to throw a kink in the best laid plans, but we weren't prepared for something like this. Something that seems to be present every waking minute. So much depends on the results of something else.
It's easy to get wrapped up in the chaos of emotions, which can make if difficult to realize how fortunate we actually are. The tumor was smaller than originally thought. Maybe the lymph nodes really are clear. Mike is strong, young and healthy and healing well from surgery. Our doctors are determined to cure Mike and we continue to receive love & support from so many people. Sometimes, though, it's hard to find that in the midst of all the other crap.
I love my husband and want to do everything I can to make this experience even a little bit less awful for him. It's our life together, but it's his body not mine, that has to go through so much. I know I can't change that, so if I can make things a bit easier for him in areas where I do have some control, I will. If that means spewing more gibberish into a blog, then that's what I'll do.
A couple of days ago I decided to add a counter to the blog. I had been hearing from a lot of people that they were reading it or knew of people that were reading it. On one hand I'm amazed that there are so many people reading this thing. On the other hand it just confirms how important Mike is to so many people.
This blog started as a way for me to remember everything and ended up as a therapy of sorts. A way to kind of purge myself of some of the fear, anger, uncertainty, loneliness & frustration that sometimes seems to take over. I figure if I can put it down in "writing" maybe I won't take it out so much on those I love most. Won't complain as much, etc. If people want to read about my complaining, fear, anger, etc. that's up to them. At least I'm not forcing it on anyone. Most of all Mike and the kids.
Sometimes I wonder how I can possibly feel lonely. I think part of it is that, from my current perspective, everyone else has their own lives to lead. "Normal" lives that aren't surrounded with so many unknowns. That was us just a month ago. We always had a pretty good idea of what was going to happen next. Sure the routine can get monotonous sometimes and things come up now and then to throw a kink in the best laid plans, but we weren't prepared for something like this. Something that seems to be present every waking minute. So much depends on the results of something else.
It's easy to get wrapped up in the chaos of emotions, which can make if difficult to realize how fortunate we actually are. The tumor was smaller than originally thought. Maybe the lymph nodes really are clear. Mike is strong, young and healthy and healing well from surgery. Our doctors are determined to cure Mike and we continue to receive love & support from so many people. Sometimes, though, it's hard to find that in the midst of all the other crap.
I love my husband and want to do everything I can to make this experience even a little bit less awful for him. It's our life together, but it's his body not mine, that has to go through so much. I know I can't change that, so if I can make things a bit easier for him in areas where I do have some control, I will. If that means spewing more gibberish into a blog, then that's what I'll do.
Tuesday, July 20, 2010
Just a plain old ordinary day
Aside from Mike still recovering from surgery, today was a pretty average day. Kids went to VBS this morning, I went to the dermatologist after having missed my appointment last week, Cal had a cub scout thing tonight and we spent the afternoon as a family hanging out at at Pecks. I guess the only thing out of the ordinary was that I had a small mole removed from my wrist that will be biopsied. Pretty exciting getting stitches for the first time in my life. Funny how I'm not the least bit fazed about having a "suspicious" mole removed. In the scheme of things, it's pretty boring.
I'm looking forward to my weekend away with Michelle & Maureen. Thelma, Thelma & Louise (without driving off a cliff at the end). Found out that one of the wineries will have a Jimmy Buffett tribute band with guest singer Nadirah Shakoor who is one of Jimmy's backup singers. Figure we'll hit most of the wineries on Friday so we can spend as much time as we want at Von Jakob. It will be good to get away and that little bit of guilt I was feeling before is pretty much gone. Did I mention I'm excited to get to see Nadirah?
Nadirah Shakoor - Making Music for Money
Back to work for me tomorrow. Mike is driving again so he can take the kids to VBS and then to the sitter for the day. Will be nice to have another "normal" day. Although, as I know full well, that can all turn in an instant. Guess that's what keeps things exciting.
I'm looking forward to my weekend away with Michelle & Maureen. Thelma, Thelma & Louise (without driving off a cliff at the end). Found out that one of the wineries will have a Jimmy Buffett tribute band with guest singer Nadirah Shakoor who is one of Jimmy's backup singers. Figure we'll hit most of the wineries on Friday so we can spend as much time as we want at Von Jakob. It will be good to get away and that little bit of guilt I was feeling before is pretty much gone. Did I mention I'm excited to get to see Nadirah?
Nadirah Shakoor - Making Music for Money
Back to work for me tomorrow. Mike is driving again so he can take the kids to VBS and then to the sitter for the day. Will be nice to have another "normal" day. Although, as I know full well, that can all turn in an instant. Guess that's what keeps things exciting.
Monday, July 19, 2010
Cautiously Optimistic
Mike had the staples removed this morning and doc said everything looks good as far as the incision is concerned. Next week we'll meet with the oncologist and find out what happens next.
In the meantime, Dr Dachman is going to have pathology look at the lymph nodes again. There were three that were significantly larger and harder than the other 27. Seems that when a biopsy is done only small slices are taken and it's possible that although the slices taken from the three enlarged nodes were in fact clear, other portions of those same nodes may not be. In an effort to be "cautiously optimistic" the nodes will be checked again. It was nice to have a few days of not worrying about that.
If the nodes are clear after the additional biopsies, it is possible that the oncologist will not prescribe chemo. However, Mike will need to have some genetic testing in the near future to find out if he is carrying a virus that makes him more susceptible to colon cancer. If that's the case, chemo won't make a bit of difference and we'll be talking about other options like a complete colectomy to make sure Mike can remain cancer free.
Just when it seems we have this thing figured out and come to terms with one aspect of it, something else pops up. On the up side, Mike is feeling quite a bit better. Still tired, but has started on the iron supplements again so hopefully he can start rebuilding some of the iron stores his body used up before all of this started.
In the meantime, Dr Dachman is going to have pathology look at the lymph nodes again. There were three that were significantly larger and harder than the other 27. Seems that when a biopsy is done only small slices are taken and it's possible that although the slices taken from the three enlarged nodes were in fact clear, other portions of those same nodes may not be. In an effort to be "cautiously optimistic" the nodes will be checked again. It was nice to have a few days of not worrying about that.
If the nodes are clear after the additional biopsies, it is possible that the oncologist will not prescribe chemo. However, Mike will need to have some genetic testing in the near future to find out if he is carrying a virus that makes him more susceptible to colon cancer. If that's the case, chemo won't make a bit of difference and we'll be talking about other options like a complete colectomy to make sure Mike can remain cancer free.
Just when it seems we have this thing figured out and come to terms with one aspect of it, something else pops up. On the up side, Mike is feeling quite a bit better. Still tired, but has started on the iron supplements again so hopefully he can start rebuilding some of the iron stores his body used up before all of this started.
Sunday, July 18, 2010
Just another day
Being home is finally hitting Mike. He is worn out and has acknowledged that his body needs to rest. Sleep seems to be the best thing at this point. We went to church this morning and it happened to be outdoors at the park. There was a potluck afterwards, but we came home instead. Just the service was enough for today. I never know just how long to let him sleep. Although, he doesn't seem to be having trouble sleeping at night even with a couple of naps during the day.
The kids are having a bit of a hard time with Daddy being home, but not available. That gets rough on me too. Trying to keep the kids quiet so Mike can sleep when they are indoors, because it is too hot & humid for them to be outside for long, is a challenge. I struggle with calling someone to see if the kids can go over there with feeling like I need to be with the kids instead. Tomorrow through Thursday they will both go to VBS in the morning , so that will help some. At some point I also need to get back to work for awhile to catch up.
I am, however, looking forward to Thursday. Maureen, Michelle & I planned a long weekend several months ago. Non-refundable, of course. At this point the plan is for Mike to stay home and I'll drop the kids off at grandma & grandpa's on the way south. A quiet weekend at home for Mike and a weekend away for me.
I wonder if guilt or relief will be the stronger feeling. Will I feel guilty if I'm relieved to be away? Can I pretend cancer doesn't exist for three days? Sometimes I just feel lost in the middle of all the craziness that is hiding behind the normal.
The kids are having a bit of a hard time with Daddy being home, but not available. That gets rough on me too. Trying to keep the kids quiet so Mike can sleep when they are indoors, because it is too hot & humid for them to be outside for long, is a challenge. I struggle with calling someone to see if the kids can go over there with feeling like I need to be with the kids instead. Tomorrow through Thursday they will both go to VBS in the morning , so that will help some. At some point I also need to get back to work for awhile to catch up.
I am, however, looking forward to Thursday. Maureen, Michelle & I planned a long weekend several months ago. Non-refundable, of course. At this point the plan is for Mike to stay home and I'll drop the kids off at grandma & grandpa's on the way south. A quiet weekend at home for Mike and a weekend away for me.
I wonder if guilt or relief will be the stronger feeling. Will I feel guilty if I'm relieved to be away? Can I pretend cancer doesn't exist for three days? Sometimes I just feel lost in the middle of all the craziness that is hiding behind the normal.
Saturday, July 17, 2010
It's starting to catch up
I'm tired. That about sums it up. Obviously, it's been a long week for everyone involved. I am grateful beyond belief to my parents and mother-in-law for taking care of the kids all week, to our friends for the visits, lawn mowing & meals that have been delivered. But, I'm really, really tired - both emotionally & physically.
Last night was our annual church camp-out. Cal wanted to camp so much and was really upset about the idea of not getting to sleep in the tent. Mike was obviously not going to be able to camp, but wanted to at least go and visit for awhile for a change of scenery. In the end I stayed with both kids & Mike and his mom went back home. I think Cal really needed to do something different to keep his mind off everything that's been going on. He's worried now about Mike having the staples removed.
I like camping, hanging out with friends, sleeping in the tent, etc. But, last night it was hot & sticky, the group site a bit up the hill from ours was up until 3am having a great time and I had another night of not getting much sleep.
I feel like I'm just complaining now, but I'm ready to get on with things already. Mike is healing slowly - mostly because he can't stand to "look sick" so is trying to do too much so he doesn't feel like he is sick.
Mike's dad will be here today to pick up his mom. Not sure yet if they will go home today or tomorrow. Again, we couldn't have done this without family here and I don't want anyone to take it the wrong way, but honestly, I'm ready for it to just be the four of us again.
I know we still have a long road ahead of us and we'll get through that too, but until we see the oncologist on the 27th maybe we can pretend to just be a normal family dealing with normal, everyday stuff like kids fighting & dogs barking instead of this cancer thing.
Last night was our annual church camp-out. Cal wanted to camp so much and was really upset about the idea of not getting to sleep in the tent. Mike was obviously not going to be able to camp, but wanted to at least go and visit for awhile for a change of scenery. In the end I stayed with both kids & Mike and his mom went back home. I think Cal really needed to do something different to keep his mind off everything that's been going on. He's worried now about Mike having the staples removed.
I like camping, hanging out with friends, sleeping in the tent, etc. But, last night it was hot & sticky, the group site a bit up the hill from ours was up until 3am having a great time and I had another night of not getting much sleep.
I feel like I'm just complaining now, but I'm ready to get on with things already. Mike is healing slowly - mostly because he can't stand to "look sick" so is trying to do too much so he doesn't feel like he is sick.
Mike's dad will be here today to pick up his mom. Not sure yet if they will go home today or tomorrow. Again, we couldn't have done this without family here and I don't want anyone to take it the wrong way, but honestly, I'm ready for it to just be the four of us again.
I know we still have a long road ahead of us and we'll get through that too, but until we see the oncologist on the 27th maybe we can pretend to just be a normal family dealing with normal, everyday stuff like kids fighting & dogs barking instead of this cancer thing.
Thursday, July 15, 2010
Are you kidding?
All along we have had so many people praying for us. Family, friends, people we barely know & people we have never even met from all around the country. There is a lot talked about regarding the "power of prayer". I guess now we can add to those stories...
So, I go home to take a shower after talking to the docs at the hospital when Mike calls. I'm thinking, I haven't been gone that long, but maybe he's already been discharged. Instead, Mike tells me that Dr Dachman just called to tell him that of the 30 lymph nodes that were removed on Monday every last one came back clear! Are you kidding me?!?! I told Mike I would be right there. I grabbed my purse & sunglasses and told my mother-in-law I was heading back. She asked, "without drying your hair?" Yup. And I was outta there. Fortunately, the hospital is only about 2 minutes from the house so I make it no time. Park, speed walk through the lobby, run up the stairs and speed walk down the hall to the "family lounge" at the end of the hall. Mike is sitting there grinning at me.
On June 25 when Dr Dachman said, "I'm sorry, Mike, but you have colon cancer" my world turned upside down with disbelief. In that other sentence from Mike, "All 30 nodes were clear", there is another feeling of disbelief. I MUCH prefer this one.
It's weird how two completely unexpected announcements can have a similar yet so incredibly different effect. Shock, disbelief & fear vs. shock, disbelief & hope.
Two oncologists, the surgeon, our doctor and both of us believed the lymph nodes were involved. This thing had been growing for 3-5 years, several nodes were swollen on the CT scan, enlarged and hard when Dr Dachman held them after removing them, yet when biopsied were clean. Lymphatic involvement was so certain that the Power Port for chemo had been installed during surgery.
That said, it doesn't mean this story is over. There was the polyp that tested positive, which was located in the lower part of Mike's colon. Ideally, all of it was removed on June 25, but there just really isn't anyway to be positive of that.
On July 27 we will meet with the oncologist to determine where we go from here. Could be that we do nothing, could be oral chemo or it could be the regular chemo we were prepared for already. Honestly, we're more afraid of doing nothing than of Mike having traditional chemo. If we do nothing & there is even one cell left hiding somewhere, it will likely continue to grow. However, if we go ahead with chemo we will be able to kill anything that might still be hiding out. Using chemo proactively feels much less threatening that having to use chemo to save your life.
Earlier on in this adventure I hoped I would be strong enough to handle all of this. Obviously, there were moments, even days, of feeling frustrated, afraid, etc. Honestly, overall it hasn't seemed as difficult as I imagined it would be. I'm not sure what that says about me, but I just did what I wanted and needed to do. Of course I had a TON of help from my parents & my in-laws & friends, not to mention the emotional support & a husband with the most positive attitude & best sense of humor of anyone else I know.
On Monday we'll go back to see Dr Dachman so Mike can have the staples removed. Until then the challenge will be for him to be able to rest when he needs to and to manage the pain. More than anything we are both looking forward to a much deserved good night's sleep.
He really IS going to be OK.
So, I go home to take a shower after talking to the docs at the hospital when Mike calls. I'm thinking, I haven't been gone that long, but maybe he's already been discharged. Instead, Mike tells me that Dr Dachman just called to tell him that of the 30 lymph nodes that were removed on Monday every last one came back clear! Are you kidding me?!?! I told Mike I would be right there. I grabbed my purse & sunglasses and told my mother-in-law I was heading back. She asked, "without drying your hair?" Yup. And I was outta there. Fortunately, the hospital is only about 2 minutes from the house so I make it no time. Park, speed walk through the lobby, run up the stairs and speed walk down the hall to the "family lounge" at the end of the hall. Mike is sitting there grinning at me.
On June 25 when Dr Dachman said, "I'm sorry, Mike, but you have colon cancer" my world turned upside down with disbelief. In that other sentence from Mike, "All 30 nodes were clear", there is another feeling of disbelief. I MUCH prefer this one.
It's weird how two completely unexpected announcements can have a similar yet so incredibly different effect. Shock, disbelief & fear vs. shock, disbelief & hope.
Two oncologists, the surgeon, our doctor and both of us believed the lymph nodes were involved. This thing had been growing for 3-5 years, several nodes were swollen on the CT scan, enlarged and hard when Dr Dachman held them after removing them, yet when biopsied were clean. Lymphatic involvement was so certain that the Power Port for chemo had been installed during surgery.
That said, it doesn't mean this story is over. There was the polyp that tested positive, which was located in the lower part of Mike's colon. Ideally, all of it was removed on June 25, but there just really isn't anyway to be positive of that.
On July 27 we will meet with the oncologist to determine where we go from here. Could be that we do nothing, could be oral chemo or it could be the regular chemo we were prepared for already. Honestly, we're more afraid of doing nothing than of Mike having traditional chemo. If we do nothing & there is even one cell left hiding somewhere, it will likely continue to grow. However, if we go ahead with chemo we will be able to kill anything that might still be hiding out. Using chemo proactively feels much less threatening that having to use chemo to save your life.
Earlier on in this adventure I hoped I would be strong enough to handle all of this. Obviously, there were moments, even days, of feeling frustrated, afraid, etc. Honestly, overall it hasn't seemed as difficult as I imagined it would be. I'm not sure what that says about me, but I just did what I wanted and needed to do. Of course I had a TON of help from my parents & my in-laws & friends, not to mention the emotional support & a husband with the most positive attitude & best sense of humor of anyone else I know.
On Monday we'll go back to see Dr Dachman so Mike can have the staples removed. Until then the challenge will be for him to be able to rest when he needs to and to manage the pain. More than anything we are both looking forward to a much deserved good night's sleep.
He really IS going to be OK.
Home Sweet Home
Although we are still at the hospital, Mike has been given the go ahead to be released today! One day earlier than the original estimate. It will be nice to leave this part of the journey behind us, although in some ways it will be more difficult at home.
The kids will be so happy to have Mike home - the dogs will be a pain in the neck. Kona has been missing me and both she & Payton will be excited and none too happy to banished to the backyard or basement when we first get home.
Furniture will be rearranged a bit so Mike can be as comfortable as possible & I imagine the kids will need to be kept busy this afternoon.
We know that our lawn was mowed yesterday by David & Louis (thank you!) and Maureen provided dinner last night (thank you!) and dinner will again be provided tonight, and the night after that, and the night after that, etc. One of the first things I need to do when I get home is make room in our freezer as we are about to be, once again, overwhelmed (in a good way) by the generosity of others.
Yesterday Cal told me he wants to be able to crawl in bed with us and cuddle again. Me too.
Dr Dachman gave Mike the go-ahead to resume regular activity. Really no major restrictions. It's crazy, the guy had two feet of colon removed and he has no restrictions as far as diet is concerned. As long as Mike chews everything really well, there should be no problems. I guess Doc assumes that Mike has at least some common sense when it comes to deciding what to eat or not.
Driving is fine once Mike is confident he can slam on the breaks if necessary. No lifting more than 25-30 pounds for now and all other physical activity can be done "at Mike's discretion". Basically, listen to your body. The human body is absolutely amazing in its ability to repair itself.
Staples (we counted at least 19) will come out on Tuesday and we should have the oncology report then as well. That's the last bit of information we need before moving forward with making a plan for chemo.
The kids will be so happy to have Mike home - the dogs will be a pain in the neck. Kona has been missing me and both she & Payton will be excited and none too happy to banished to the backyard or basement when we first get home.
Furniture will be rearranged a bit so Mike can be as comfortable as possible & I imagine the kids will need to be kept busy this afternoon.
We know that our lawn was mowed yesterday by David & Louis (thank you!) and Maureen provided dinner last night (thank you!) and dinner will again be provided tonight, and the night after that, and the night after that, etc. One of the first things I need to do when I get home is make room in our freezer as we are about to be, once again, overwhelmed (in a good way) by the generosity of others.
Yesterday Cal told me he wants to be able to crawl in bed with us and cuddle again. Me too.
Dr Dachman gave Mike the go-ahead to resume regular activity. Really no major restrictions. It's crazy, the guy had two feet of colon removed and he has no restrictions as far as diet is concerned. As long as Mike chews everything really well, there should be no problems. I guess Doc assumes that Mike has at least some common sense when it comes to deciding what to eat or not.
Driving is fine once Mike is confident he can slam on the breaks if necessary. No lifting more than 25-30 pounds for now and all other physical activity can be done "at Mike's discretion". Basically, listen to your body. The human body is absolutely amazing in its ability to repair itself.
Staples (we counted at least 19) will come out on Tuesday and we should have the oncology report then as well. That's the last bit of information we need before moving forward with making a plan for chemo.
Wednesday, July 14, 2010
Determination
Morning
I'm not even sure where to start in regard to my admiration and respect for Mike. His determination is inspiring and makes me want to be a stronger person. I've been in love with Mike for half of my life and it is because of him that I am he person I am today.
Recovering from this surgery has been anything but glamorous, but Mike does it all with the the good humor, that anyone who knows him, appreciates. Sometimes when a person is in a situation like this, no matter how laid back they usually are, the boredom, indignity, and dependence can be more than they can take. So far, Mike continues to remain upbeat, joking with the nurses and just taking things as they go.
The nurses are happy to have Mike as their patient. He doesn't complain, does as much as he can on his own, was up walking sooner than expected & apologizes when his body does something that is out of his control (a recently resectioned bowel can be a bit temperamental).
I am so grateful (I seem to be using that word a lot lately) that our parents are able to watch the kids so I am able to spend so much time with Mike. I hope he isn't getting sick of me. LOL
Afternoon
For lunch Mike actually had what resembled a chicken breast & mashed potatoes. After seeing Dr Dachman this morning & finally having the foley removed (Yeah!!) we were told that Mike is doing "exceptionally well" and if pain can be managed by taking the pain meds orally he may be able to go home tomorrow. Just shows what prayers, determination & more prayers can do.
I'm not even sure where to start in regard to my admiration and respect for Mike. His determination is inspiring and makes me want to be a stronger person. I've been in love with Mike for half of my life and it is because of him that I am he person I am today.
Recovering from this surgery has been anything but glamorous, but Mike does it all with the the good humor, that anyone who knows him, appreciates. Sometimes when a person is in a situation like this, no matter how laid back they usually are, the boredom, indignity, and dependence can be more than they can take. So far, Mike continues to remain upbeat, joking with the nurses and just taking things as they go.
The nurses are happy to have Mike as their patient. He doesn't complain, does as much as he can on his own, was up walking sooner than expected & apologizes when his body does something that is out of his control (a recently resectioned bowel can be a bit temperamental).
I am so grateful (I seem to be using that word a lot lately) that our parents are able to watch the kids so I am able to spend so much time with Mike. I hope he isn't getting sick of me. LOL
Afternoon
For lunch Mike actually had what resembled a chicken breast & mashed potatoes. After seeing Dr Dachman this morning & finally having the foley removed (Yeah!!) we were told that Mike is doing "exceptionally well" and if pain can be managed by taking the pain meds orally he may be able to go home tomorrow. Just shows what prayers, determination & more prayers can do.
Tuesday, July 13, 2010
Up & Moving
Epidural is gone and Mike walked the halls a little. He's sleeping again, which is what he needs. Turns out insomnia is common for someone of Mike's age, fitness level & health that goes through this type of surgery. Tonight he'll get Ambien to help him sleep & I brought the ear plugs. Funny how you are supposed to rest as much as you can so the well meaning nurses can disturb you every 90 minutes.
Speaking of nurses, they have all been great. I'm not just saying that because I happen to be friends with two of them either.
Kids are doing better today now that they've seen Mike a couple of times. Zoey was a bit quieter than usual when I went home to get cleaned up, but overall they're having fun with their grandparents.
Not a whole lot for me to do here, but I don't want to be anywhere else. Knowing the kids are taken care of lifts a huge weight. I can focus my energy on Mike and making sure he gets what he needs. Even in a small hospital things come up and he may not be high on the list of priorities. As awful as it sounds, it just means there is someone else worse off than he is.
Speaking of nurses, they have all been great. I'm not just saying that because I happen to be friends with two of them either.
Kids are doing better today now that they've seen Mike a couple of times. Zoey was a bit quieter than usual when I went home to get cleaned up, but overall they're having fun with their grandparents.
Not a whole lot for me to do here, but I don't want to be anywhere else. Knowing the kids are taken care of lifts a huge weight. I can focus my energy on Mike and making sure he gets what he needs. Even in a small hospital things come up and he may not be high on the list of priorities. As awful as it sounds, it just means there is someone else worse off than he is.
Long Night
Not much sleep last night. Actually, I slept more than Mike did. For a guy that can fall asleep on the couch by 8 on any given night, it's rough to see him not be able to sleep even though he needs & wants to. The big issue is that he hasn't been able to move. He had an oxygen tube, IV, epidural & catheter. Plus the epidural has made his entire right side and leg numb, so he wouldn't have been able to stand even if the nurses would have let him.
Finally around midnight, he was able to stop using the oxygen. His O2 levels have remained in the mid-upper 90's so it looks like we're past that. This morning, Jeff, the anesthesiologist adjusted the epidural down to 5 from 8, but Mike also has a manual pump he can use for a boost if he needs it. Hopefully, that will bring back the rest of feeling in his right leg. It came back gradually over the night, but he probably still couldn't put weight on it if he tried.
Mike's first goal today (aside from actually drinking something) is to have the catheter removed. Now that feeling is coming back into his upper legs he's also feeling that a bit more and claims it isn't comfortable. Hmmm, what a surprise! So, hopefully he can get enough feeling back in both legs to get up and walk to the bathroom and get rid of that. Although, the kids seemed pretty fascinated by it.
Docs should be in later this morning to do rounds. This will be the first time Mike will have spoken to them since before surgery. Will be good to get more information and hear again what was told to me yesterday. I can't get out of my head the statistic Dr Dachman mentioned yesterday following surgery concerning 5 and 10 year survival rates for situations similar to Mike's. I appreciate the honesty, but it's not something I want to think about. Sometimes denial is good.
Finally around midnight, he was able to stop using the oxygen. His O2 levels have remained in the mid-upper 90's so it looks like we're past that. This morning, Jeff, the anesthesiologist adjusted the epidural down to 5 from 8, but Mike also has a manual pump he can use for a boost if he needs it. Hopefully, that will bring back the rest of feeling in his right leg. It came back gradually over the night, but he probably still couldn't put weight on it if he tried.
Mike's first goal today (aside from actually drinking something) is to have the catheter removed. Now that feeling is coming back into his upper legs he's also feeling that a bit more and claims it isn't comfortable. Hmmm, what a surprise! So, hopefully he can get enough feeling back in both legs to get up and walk to the bathroom and get rid of that. Although, the kids seemed pretty fascinated by it.
Docs should be in later this morning to do rounds. This will be the first time Mike will have spoken to them since before surgery. Will be good to get more information and hear again what was told to me yesterday. I can't get out of my head the statistic Dr Dachman mentioned yesterday following surgery concerning 5 and 10 year survival rates for situations similar to Mike's. I appreciate the honesty, but it's not something I want to think about. Sometimes denial is good.
Monday, July 12, 2010
Post-Surgery
That step is over! Mike is resting comfortably with the help of REALLY good narcotics given through an epidural. Probably good the meds are disbursed on a timer, otherwise he may want to tough it out with the pain.
We arrived at 7:30 this morning and at 10:00 he was taken to the OR. Upland Hills is awesome. I was called at 10:40 and told that the incision was just made. I was called again half-way through the procedure and told that the resection was taking place. I was called yet again to be told that the resection was complete and the port was being installed. Not long after that last call, Dr Kramer, who had been assisting, came out to talk to us. He looked relaxed, which was a really good sign. Especially considering how haggard he looked the last time we talked to him at the hospital following the diagnosis.
Surgery was textbook. Dr Dachman removed about 2 feet of colon and all of the surrounding lymph nodes he could find. I was relieved to hear that the cancer had NOT spread to the surrounding organs- Thank God. However, the lymph nodes are involved, which we had pretty much figured. Until the biopsy, however, we won't know how many are cancerous.
After Dr Kramer left it was as if whatever was keeping me detached disappeared. I was so relieved that the surgery had no complications and that no other organs were attacked it was all I could do to keep from sobbing.
When Dr Dachman finally came out, he gave me a picture of the section of colon that was removed. Right in the middle is that ugly, ugly mess of cells that caused all of this upheaval. I'm thinking we should make copies and use them as target practice. Or, maybe we'll just use the picture as our Christmas card this year. LOL
We had planned on waiting until tomorrow afternoon to have the kids visit Mike, but he's feeling well enough and doesn't have the nose tube so my parents are bringing them by for a quick visit. I think he needs to see them as much as they want to see him.
I'm spending the night at the hospital tonight and know the kids are in good hands with their grandparents.
Thank you to Pastor Todd, Maureen, Michelle, Carl, Mom & Dad, Ma & Dad, Cal & Zoey for coming to visit or stay with me during the surgery.
I will continue to update as we find out more info and as Mike progresses. He may even get to eat jello for breakfast tomorrow - Whoo Hoo!
Mike needed to up his pain meds a bit. The epidural is working well for the area surrounding the incision, but just above that and where the port is was starting to bother him. Lacey, his nurse gave him some different meds in his IV and after about a half hour he was starting to feel better. I found that if I ask him if he can breathe regularly rather than shallow it's a good judge on whether or not he needs increased pain control.
Mike was also given caffeine in an IV before and after surgery to help combat any caffeine withdrawal type headaches. Unfortunately, because of that he isn't too inclined to sleep so has been awake since coming out of surgery at 2. Hopefully, he'll be able to sleep through the night. Well, as much as you can when you get your vitals checked every half hour.
We arrived at 7:30 this morning and at 10:00 he was taken to the OR. Upland Hills is awesome. I was called at 10:40 and told that the incision was just made. I was called again half-way through the procedure and told that the resection was taking place. I was called yet again to be told that the resection was complete and the port was being installed. Not long after that last call, Dr Kramer, who had been assisting, came out to talk to us. He looked relaxed, which was a really good sign. Especially considering how haggard he looked the last time we talked to him at the hospital following the diagnosis.
Surgery was textbook. Dr Dachman removed about 2 feet of colon and all of the surrounding lymph nodes he could find. I was relieved to hear that the cancer had NOT spread to the surrounding organs- Thank God. However, the lymph nodes are involved, which we had pretty much figured. Until the biopsy, however, we won't know how many are cancerous.
After Dr Kramer left it was as if whatever was keeping me detached disappeared. I was so relieved that the surgery had no complications and that no other organs were attacked it was all I could do to keep from sobbing.
When Dr Dachman finally came out, he gave me a picture of the section of colon that was removed. Right in the middle is that ugly, ugly mess of cells that caused all of this upheaval. I'm thinking we should make copies and use them as target practice. Or, maybe we'll just use the picture as our Christmas card this year. LOL
We had planned on waiting until tomorrow afternoon to have the kids visit Mike, but he's feeling well enough and doesn't have the nose tube so my parents are bringing them by for a quick visit. I think he needs to see them as much as they want to see him.
I'm spending the night at the hospital tonight and know the kids are in good hands with their grandparents.
Thank you to Pastor Todd, Maureen, Michelle, Carl, Mom & Dad, Ma & Dad, Cal & Zoey for coming to visit or stay with me during the surgery.
I will continue to update as we find out more info and as Mike progresses. He may even get to eat jello for breakfast tomorrow - Whoo Hoo!
Mike needed to up his pain meds a bit. The epidural is working well for the area surrounding the incision, but just above that and where the port is was starting to bother him. Lacey, his nurse gave him some different meds in his IV and after about a half hour he was starting to feel better. I found that if I ask him if he can breathe regularly rather than shallow it's a good judge on whether or not he needs increased pain control.
Mike was also given caffeine in an IV before and after surgery to help combat any caffeine withdrawal type headaches. Unfortunately, because of that he isn't too inclined to sleep so has been awake since coming out of surgery at 2. Hopefully, he'll be able to sleep through the night. Well, as much as you can when you get your vitals checked every half hour.
Sunday, July 11, 2010
Tomorrow
Tomorrow is the day. The first day of the rest of our lives, right? I honestly don't know how I feel right now. I think maybe it just doesn't seem real, I don't know. I usually have a lot of feelings one way or another, but tonight I just feel kind of empty. I imagine tomorrow will be a different story.
I worry about the kids, Cal especially. I know he's having a rough time and I hope he can be distracted enough by his grandparents. Selfishly, I only want to be with Mike. I don't want any other responsibilities right now. I am beyond blessed to have parents & in-laws that are spending the week with me in order to take care of Cal & Zoey.
It'll be interesting to see what tomorrow brings. What the doctors will find once they get in there. At this stage of the war that's still an unknown. Based on x-rays and CT scans Mike's lungs and liver look clear, we're banking on that being the case once Dr Dachman digs around.
Time to wrap it up, get my kids in bed & spend some quality time with Mike. He's been nauseous most of the day because of the super-antibiotics he has to take to "sterilize" his colon. I just kind of see it as a taste of what's to come once the chemo starts, I guess.
I worry about the kids, Cal especially. I know he's having a rough time and I hope he can be distracted enough by his grandparents. Selfishly, I only want to be with Mike. I don't want any other responsibilities right now. I am beyond blessed to have parents & in-laws that are spending the week with me in order to take care of Cal & Zoey.
It'll be interesting to see what tomorrow brings. What the doctors will find once they get in there. At this stage of the war that's still an unknown. Based on x-rays and CT scans Mike's lungs and liver look clear, we're banking on that being the case once Dr Dachman digs around.
Time to wrap it up, get my kids in bed & spend some quality time with Mike. He's been nauseous most of the day because of the super-antibiotics he has to take to "sterilize" his colon. I just kind of see it as a taste of what's to come once the chemo starts, I guess.
Saturday, July 10, 2010
Up and Down - Again
I hate, hate, hate the ups and downs of this stupid thing. Yesterday was a great day, the cancer didn't seem to be the main focus of the day. Sure, it was there. Because of it we went tubing & had a great family day. Would we have done that if cancer wasn't a part of our current lives? No, Mike & I would have both been at work yesterday and the kids with their sitter. Am I grateful for yesterday? Absolutely. Do I wish it had just been a normal Friday? I don't know.
How can I be grateful and hate it at the same time?
The fear is back today too. I don't want to focus my energy on that, but sometimes it's SO hard not to. The day after tomorrow is surgery. I'm afraid of what else they will find, I'm afraid of the worst. I'm afraid of what our future will be. I'm afraid I won't be as strong as I need to be for Mike and the kids. I much prefer the days when hope is stronger than fear.
I tell my kids not to use the word hate. It's an ugly word and it's hurtful - just like cancer.
Not five minutes after I posted this, I ended up sitting on the floor rocking my son in my arms and crying as he cried & yelled at God and blamed God for Daddy needing to have surgery. I know how he feels.
Mike posted on his FB page: "God's role in my disease is difficult for an adult mind to grasp. It is impossible for a 6 year old. We tell our kids that God is present in our lives but we also say he is not to blame. God is the cure not the cancer, the doctors not the diagnosis, the healing not the hurt. Cal is tearfully angry today but has nowhere to direct the anger. Zoey is just happy to have a new bracelet. I wish I was 4 years old."
How can I be grateful and hate it at the same time?
The fear is back today too. I don't want to focus my energy on that, but sometimes it's SO hard not to. The day after tomorrow is surgery. I'm afraid of what else they will find, I'm afraid of the worst. I'm afraid of what our future will be. I'm afraid I won't be as strong as I need to be for Mike and the kids. I much prefer the days when hope is stronger than fear.
I tell my kids not to use the word hate. It's an ugly word and it's hurtful - just like cancer.
Not five minutes after I posted this, I ended up sitting on the floor rocking my son in my arms and crying as he cried & yelled at God and blamed God for Daddy needing to have surgery. I know how he feels.
Mike posted on his FB page: "God's role in my disease is difficult for an adult mind to grasp. It is impossible for a 6 year old. We tell our kids that God is present in our lives but we also say he is not to blame. God is the cure not the cancer, the doctors not the diagnosis, the healing not the hurt. Cal is tearfully angry today but has nowhere to direct the anger. Zoey is just happy to have a new bracelet. I wish I was 4 years old."
Friday, July 9, 2010
Great Family Day
Just returned from tubing down the Wisconsin River with Mike & the kids. Couldn't have asked for a more beautiful day. It's too bad we don't have more time in everyday life to just have a play day for no reason. Mike said it's been a pretty nice two week vacation since getting the diagnosis. It was important to him to spend time with us while he still feels good before the surgery. Tonight the kids get to stay home with a sitter (thank you Emily!) and Mike & I are headed to the Comedy Club to spend a couple of hours laughing instead of worrying. All in all a really good day.
I love my family & I love our life together.
I love my family & I love our life together.
Thursday, July 8, 2010
A Plan
Yesterday, for the first time in two weeks, I actually felt hungry. I also slept through the night last night. I think knowing what the next step is at least puts some order to all of this chaos.
The other day Mike came across a website http://www.colonclub.com/ - it's a site geared towards people diagnosed at a younger age than is typical. There is a message board/forum as well. I have to say, I love it! Mike probably won't register with the site (he's just fine getting his support from people he already has a relationship with), but in less than 24 hours I had 14 responses to my post as a newbie. Have I said before how amazing it is to have so much support? My theory is that I can never get enough information to really be satisfied. And, if I can get first hand info from people currently going through diagnosis & treatment as well as from their support people - all the better.
My sister-in-law, Colleen, is organizing a group for the "Get Your Rear in Gear" 5K in Tinley Park, IL. The run is July 25 - so they're moving quickly. We won't be able to go this time, but I'm planning next fall in 2011 when Milwaukee holds the event.
Today is a good day.
The other day Mike came across a website http://www.colonclub.com/ - it's a site geared towards people diagnosed at a younger age than is typical. There is a message board/forum as well. I have to say, I love it! Mike probably won't register with the site (he's just fine getting his support from people he already has a relationship with), but in less than 24 hours I had 14 responses to my post as a newbie. Have I said before how amazing it is to have so much support? My theory is that I can never get enough information to really be satisfied. And, if I can get first hand info from people currently going through diagnosis & treatment as well as from their support people - all the better.
My sister-in-law, Colleen, is organizing a group for the "Get Your Rear in Gear" 5K in Tinley Park, IL. The run is July 25 - so they're moving quickly. We won't be able to go this time, but I'm planning next fall in 2011 when Milwaukee holds the event.
Today is a good day.
Wednesday, July 7, 2010
One more day
Noon
After our emotionally draining day yesterday, I woke up today feeling more sad than angry. Sad that Mike has to go through this, sad that the kids will have to go through it. Each day we get closer to surgery, the closer Cal & Zoey come to having their world tipped over. I can't imagine this won't have some kind of effect on them. I hope though, when this nightmare is over, they won't remember most of it.
We have an appointment with a counselor today. I made the appointment right after Mike's diagnosis not knowing if we would need it or not. After some back and forth, Cal decided he doesn't want to go. The pull of riding a scooter at his friend's house is just too strong. As far as I'm concerned right now, that's a good thing. Why should we force him to go? We have been open and honest with the kids from the start - no secrets. After next week maybe he'll change his mind. Cal likes Laura and she was a huge help to him in getting rid of the "worry monster" that showed up after Mike's truck accident.
We'll see how it goes today. I honestly think we're doing OK so far in regard to talking to each other about it and involving our friends, accepting help, etc. I also know that there can be a very fine line between having your act together and losing it completely. I figure talking to Laura sure can't hurt at this point.
After our emotionally draining day yesterday, I woke up today feeling more sad than angry. Sad that Mike has to go through this, sad that the kids will have to go through it. Each day we get closer to surgery, the closer Cal & Zoey come to having their world tipped over. I can't imagine this won't have some kind of effect on them. I hope though, when this nightmare is over, they won't remember most of it.
We have an appointment with a counselor today. I made the appointment right after Mike's diagnosis not knowing if we would need it or not. After some back and forth, Cal decided he doesn't want to go. The pull of riding a scooter at his friend's house is just too strong. As far as I'm concerned right now, that's a good thing. Why should we force him to go? We have been open and honest with the kids from the start - no secrets. After next week maybe he'll change his mind. Cal likes Laura and she was a huge help to him in getting rid of the "worry monster" that showed up after Mike's truck accident.
We'll see how it goes today. I honestly think we're doing OK so far in regard to talking to each other about it and involving our friends, accepting help, etc. I also know that there can be a very fine line between having your act together and losing it completely. I figure talking to Laura sure can't hurt at this point.
Tuesday, July 6, 2010
Anger & Faith
So, right now I'm mostly angry. Angry enough that I want to scream, throw something, break something, you get the idea. Problem is there is no one to actually be angry with and THAT makes me angry. I don't blame anyone, I don't blame God. God is the one who will help us get through this ugly mess. I'm not focusing on the "what if we had..." or "if only...". None of that matters one bit and there's no sense focusing energy on that kind of crap. Right now I need to work on turning this angry energy into something more positive. Maybe tomorrow I'll figure out how to do that. For tonight though, I think I need to just be OK with the fact I'm angry.
Enough of that. Here's what we found out today when we saw Dr Dachman. Yep, Mike has cancer - no surprise there. The oncologist also said it looks as though the lymph nodes are likely involved. Again, no surprise. That means we're looking at Stage 3 colon cancer. What we weren't really prepared for though, was finding out that the polyp that had been removed also appears to be cancerous. We had guessed the polyp had been removed from roughly the same area as the main tumor. Unfortunately, it was removed from the lower sigmoid colon. Essentially, Mike had two seperate cancers in his colon - one at each end. When the polyp was removed, the cancer from that area was also likely removed. Although there is no way to know that for sure at this point in time.
Now comes another bizarre twist - If the lymph nodes had appeared to be clear on the x-ray & CT, the suggested course of action would have been to remove the entire colon. By removing the entire colon - all of the cancer would also be removed. However, because it is highly likely that the lymph nodes ARE involved, he is only having the orginally planned right hemi-coloectomy. With the lymph nodes involved chemo is a definite reality. If they weren't involved, then chemo would not necessarily be a part of the treatment. The plan is that the chemo will not only attack any damaged lymph nodes, but also any remaining cancer cells from the site of the polyp. So...take your pick A) you have to get chemo but also get to keep half of your colon or B) No chemo, but you lose your entire colon & have to change your lifestyle to be within arms reach of a bathroom for a very long time. Not an easy decision when actually faced with it.
Surgery will be open as opposed to laparoscopic. Dr Dachman wants to be able to see and feel everything including the surrounding organs and lymph nodes to be sure they don't miss anything. If anything looks suspicious, it comes out. Fine with me.
During the surgery on Monday a "Power Port" will be inserted under Mike's collar bone. This will enable him to have, as he puts it, "drive through chemo". We don't know a lot about it at this point, but it sounds as though he'll be able to do more at home rather than sitting at the hospital for treatment.
Following surgery Mike will be in the hospital for 4-6 days. He gets an epidural that will last up to 36 hours (lucky guy), but he also gets a catheter (sorry, trying not to laugh). We've decided after talking to Dr Dachman that we won't have the kids visit until Tuesday. Monday he'll be out of it for the most part anyway so there's no point in getting the kids upset about Daddy being "sick".
Mike asked the doc how long it would have been before he would have been obviously sick enough to see someone if it hadn't been for his failed PT run. Dr Dachman said within 90 days he would have known he needed to see a doctor. By Christmas his liver would be fully metastasized. And by this time next year, he wouldn't be with us.
There may be some people who wonder why God lets things like this happen. Mike lives right, eats relatively healthy, is active, doesn't fit the 50 years and up demographic, and is a good person. Up until now, I've always thought that it isn't God who "lets" things like this happen, faith in God is the reason we can get through the worst of the worst. I haven't changed my mind on that one. Even with as bad as it might get over the next year, I HAVE to believe that God will help us through this. I see God in so many things. The relationship we have with our primary doctor & the surgeon, the friends who have jumped in to help us when we may not even know what help we need, our family who has always stood by us and will continue to stand by us even if they are hundreds or thousands of miles away.
Thank you to Pastor Todd for introducing me to this song:
"Holy Now" by Peter Mayer
When I was a boy, each week
On Sunday, we would go to church
And pay attention to the priest
He would read the holy word
And consecrate the holy bread
And everyone would kneel and bow
Today the only difference is
Everything is holy now
Everything, everything
Everything is holy now
When I was in Sunday school
We would learn about the time
Moses split the sea in two
Jesus made the water wine
And I remember feeling sad
That miracles don’t happen still
But now I can’t keep track
‘Cause everything’s a miracle
Everything, Everything
Everything’s a miracle
Wine from water is not so small
But an even better magic trick
Is that anything is here at all
So the challenging thing becomes
Not to look for miracles
But finding where there isn’t one
When holy water was rare at best
It barely wet my fingertips
But now I have to hold my breath
Like I’m swimming in a sea of it
It used to be a world half there
Heaven’s second rate hand-me-down
But I walk it with a reverent air
‘Cause everything is holy now
Everything, everything
Everything is holy now
Read a questioning child’s face
And say it’s not a testament
That’d be very hard to say
See another new morning come
And say it’s not a sacrament
I tell you that it can’t be done
This morning, outside I stood
And saw a little red-winged bird
Shining like a burning bush
Singing like a scripture verse
It made me want to bow my head
I remember when church let out
How things have changed since then
Everything is holy now
It used to be a world half-there
Heaven’s second rate hand-me-down
But I walk it with a reverent air
‘Cause everything is holy now
Enough of that. Here's what we found out today when we saw Dr Dachman. Yep, Mike has cancer - no surprise there. The oncologist also said it looks as though the lymph nodes are likely involved. Again, no surprise. That means we're looking at Stage 3 colon cancer. What we weren't really prepared for though, was finding out that the polyp that had been removed also appears to be cancerous. We had guessed the polyp had been removed from roughly the same area as the main tumor. Unfortunately, it was removed from the lower sigmoid colon. Essentially, Mike had two seperate cancers in his colon - one at each end. When the polyp was removed, the cancer from that area was also likely removed. Although there is no way to know that for sure at this point in time.
Now comes another bizarre twist - If the lymph nodes had appeared to be clear on the x-ray & CT, the suggested course of action would have been to remove the entire colon. By removing the entire colon - all of the cancer would also be removed. However, because it is highly likely that the lymph nodes ARE involved, he is only having the orginally planned right hemi-coloectomy. With the lymph nodes involved chemo is a definite reality. If they weren't involved, then chemo would not necessarily be a part of the treatment. The plan is that the chemo will not only attack any damaged lymph nodes, but also any remaining cancer cells from the site of the polyp. So...take your pick A) you have to get chemo but also get to keep half of your colon or B) No chemo, but you lose your entire colon & have to change your lifestyle to be within arms reach of a bathroom for a very long time. Not an easy decision when actually faced with it.
Surgery will be open as opposed to laparoscopic. Dr Dachman wants to be able to see and feel everything including the surrounding organs and lymph nodes to be sure they don't miss anything. If anything looks suspicious, it comes out. Fine with me.
During the surgery on Monday a "Power Port" will be inserted under Mike's collar bone. This will enable him to have, as he puts it, "drive through chemo". We don't know a lot about it at this point, but it sounds as though he'll be able to do more at home rather than sitting at the hospital for treatment.
Following surgery Mike will be in the hospital for 4-6 days. He gets an epidural that will last up to 36 hours (lucky guy), but he also gets a catheter (sorry, trying not to laugh). We've decided after talking to Dr Dachman that we won't have the kids visit until Tuesday. Monday he'll be out of it for the most part anyway so there's no point in getting the kids upset about Daddy being "sick".
Mike asked the doc how long it would have been before he would have been obviously sick enough to see someone if it hadn't been for his failed PT run. Dr Dachman said within 90 days he would have known he needed to see a doctor. By Christmas his liver would be fully metastasized. And by this time next year, he wouldn't be with us.
There may be some people who wonder why God lets things like this happen. Mike lives right, eats relatively healthy, is active, doesn't fit the 50 years and up demographic, and is a good person. Up until now, I've always thought that it isn't God who "lets" things like this happen, faith in God is the reason we can get through the worst of the worst. I haven't changed my mind on that one. Even with as bad as it might get over the next year, I HAVE to believe that God will help us through this. I see God in so many things. The relationship we have with our primary doctor & the surgeon, the friends who have jumped in to help us when we may not even know what help we need, our family who has always stood by us and will continue to stand by us even if they are hundreds or thousands of miles away.
Thank you to Pastor Todd for introducing me to this song:
"Holy Now" by Peter Mayer
When I was a boy, each week
On Sunday, we would go to church
And pay attention to the priest
He would read the holy word
And consecrate the holy bread
And everyone would kneel and bow
Today the only difference is
Everything is holy now
Everything, everything
Everything is holy now
When I was in Sunday school
We would learn about the time
Moses split the sea in two
Jesus made the water wine
And I remember feeling sad
That miracles don’t happen still
But now I can’t keep track
‘Cause everything’s a miracle
Everything, Everything
Everything’s a miracle
Wine from water is not so small
But an even better magic trick
Is that anything is here at all
So the challenging thing becomes
Not to look for miracles
But finding where there isn’t one
When holy water was rare at best
It barely wet my fingertips
But now I have to hold my breath
Like I’m swimming in a sea of it
It used to be a world half there
Heaven’s second rate hand-me-down
But I walk it with a reverent air
‘Cause everything is holy now
Everything, everything
Everything is holy now
Read a questioning child’s face
And say it’s not a testament
That’d be very hard to say
See another new morning come
And say it’s not a sacrament
I tell you that it can’t be done
This morning, outside I stood
And saw a little red-winged bird
Shining like a burning bush
Singing like a scripture verse
It made me want to bow my head
I remember when church let out
How things have changed since then
Everything is holy now
It used to be a world half-there
Heaven’s second rate hand-me-down
But I walk it with a reverent air
‘Cause everything is holy now
Monday, July 5, 2010
The next step
Had a good time yesterday with family. Backyard fireworks were fun and it was great to spend some time NOT thinking about cancer.
I had a good talk with my mother-in-law. She is a cancer survivor herself and more than anything doesn't want Mike to have to go through the same pain of chemo and radiation that she did. I can't imagine what it must be like to have your child go through something like this.
Our good friend, Justin, came for a visit as well. I lost it a bit when he showed up, but I kind of thought I would anyway. He was best man in our wedding and just one of those people you know you may not see often, but will always be an important part of your life.
Tomorrow is our next step. The week and a half we've been waiting since the diagnosis has seemed at least twice that long. We see the surgeon at 11 and will hopefully have more information about the tumor. Is it contained within the colon or has it crossed muscle? Does it appear to be a "normal" cancerous tumor or something out of the ordinary? We may or may not have those answers tomorrow, but at least the oncology report will be available and might shed a bit more light on what we're dealing with.
I'm hoping we can sleep well tonight, but given the roller coaster ride my stomach has been on today, it doesn't seem all that likely.
I had a good talk with my mother-in-law. She is a cancer survivor herself and more than anything doesn't want Mike to have to go through the same pain of chemo and radiation that she did. I can't imagine what it must be like to have your child go through something like this.
Our good friend, Justin, came for a visit as well. I lost it a bit when he showed up, but I kind of thought I would anyway. He was best man in our wedding and just one of those people you know you may not see often, but will always be an important part of your life.
Tomorrow is our next step. The week and a half we've been waiting since the diagnosis has seemed at least twice that long. We see the surgeon at 11 and will hopefully have more information about the tumor. Is it contained within the colon or has it crossed muscle? Does it appear to be a "normal" cancerous tumor or something out of the ordinary? We may or may not have those answers tomorrow, but at least the oncology report will be available and might shed a bit more light on what we're dealing with.
I'm hoping we can sleep well tonight, but given the roller coaster ride my stomach has been on today, it doesn't seem all that likely.
Sunday, July 4, 2010
Independence Day
Some days are better than others - that's just the way it goes. Yesterday, for some reason was one of the more difficult days. Maybe it's just the idea that this "thing" is always with us despite the fact life goes on as usual. Being in this holding pattern of waiting isn't always easy. Let's get on with it and see what else we're dealing with.
Books on the subject of colon cancer or cancer in general are both a help and hindrance, I think. The options are endless, so is the hope. But, so are the unknowns. Did you know that genetic testing to determine if Cal & Zoey are at a higher risk can influence their ability to get health or life insurance down the road? It's better to know that now, but it definitely adds to the worry when my mindset isn't as positive as I want it to be.
I want to be independent of this thing that has wrapped itself around my husband and our lives.
Today will be better.
Saturday, July 3, 2010
Being proactive
In the last week two people close to us have made appointments for a colonoscopy because of Mike. Both are under 40 and more than 10 years away from the first "suggested" colonoscopy.
They are concerned enough to do it because they share one or more similar symptoms that MIke had. Although, it is only now looking back, that we understand they were warning signs of colon cancer and not just some random minor physical nuisances.
The kids
Yesterday we told the kids that Mike has cancer. The more we talk to each other and our support system, the more often the word comes up. Cal & Zoey needed to hear it from us before they heard it someplace else.
Neither of them seemed familiar with the word, cancer. This spring a kindergartner at Cal's school died from cancer. We wanted the kids to understand that Daddy's cancer is different and that we are hopeful that the surgery will get rid of it. We also told them about
Grandma "Moose" (Mike's mom) and how she overcame cancer the year I was pregnant with Cal. We wanted to warn them that they might see people acting upset about Daddy and that we don't want them to be afraid of that. Both kids seem to understand it is serious, but they don't seem to be too horribly disturbed by it. For that, too, I am grateful.
When Mike and I first talked about having kids we joked about passing on acne and crooked teeth. Now we talk about the reality of also passing on a risk of colon cancer & depression (I was diagnosed & have been on anti-depressants since the fall of 2006). Not quite so easy to joke about. Fortunately, we will be educated and can do as much as possible to limit the risks of both. Obviously, as in Mike's case, that doesn't mean it can't happen. But, would we have decided to not have kids had we known I would have depression & Mike would have colon cancer and that we could potentially pass those diseases on to our children? We can't protect our kids from everything, as much as we wish we could. None of this is our fault or the fault of our parents.
It just is.
Remaining realistic
While staying busy has been helpful, we are also realistic about what the immediate future may hold. If, in fact, the lymph nodes are also cancerous we know there will be a long haul with chemo. Getting things in order now will hopefully make that easier later.
I have amazing friends that are organizing a list of people that have offered to help in one way or another. Hopefully we won't need to utilize the list, but it will be there if necessary. I would list names of everyone who is trying to make this as easy as possible whether by physically doing something or being emotionally supportive, but I am afraid of forgetting a name or two. You know who you are and I love you.
The other day we took the kids to the beach. As usual the kids were both climbing all over Mike like he was a human jungle gym. At one point Mike told the kids to both hang on me so that "mommy will know she can bring you both to the beach alone". A week ago that comment wouldn't have fazed me at all. But now that same comment could mean something entirely different.
It's hard to believe it has only been 8 days since Mike's colonoscopy and we got the news. A lot has changed, but even more has remained the same. My kids still feel safe and loved, the people we thought were are friends have proven it again and again with their love & support, my family is as strong - stronger - than ever. I may hate cancer, but I love the life we have.
Staying Busy
Since finding out we have gone to a party at the CSA where we get our veggies, tied up loose ends at work, had dinner with good friends, camped overnight two nights, went to Great America & will spend time with extended family and enjoy the fireworks. Some people have wondered why we would do all of these things. Why not? Why should we sit home and wait and worry and make ourselves crazy about something we have no control over. We have a life to live. Some of staying busy is a defense mechanism, of course. The busier we are the less time we have to think about the "what ifs".
On the other hand it's a chance for us to remember what's really important. Spending time with friends and family. Reaching out to people we may not see much of anymore, but have a history with. It's funny, we have never even come close to using all of our cell phone minutes every month until now.
Great America yesterday was a perfect day. The weather was beautiful, the lines were short, the kids were excited and Mike's brother Ed & his wife Colleen joined us. Mike was tired, but was able to catch a quick nap while we rode a train around part of the park. Why would we want to sit at home and wait when we could be doing something fun? Without being fatalistic, we want to do as much as we can while Mike is feeling fairly well. At the minimum he's having major surgery in just over a week and will be recovering from that for at least a couple of weeks.
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