Today, my fluids were disconnected and my port was de-accessed.
I AM DONE WITH CHEMO!
Of course, when the needle came out, I burst into happy tears...just like I did when the sun hit my face after my surgery. I feel like a HUGE mountain has been conquered in this fight.
There is a bit of denial that will have to be dealt with. I still have the sense of urgency...like I have to get everything done before I get blasted again. I have a huge case of the what-ifs...What if the cancer comes back? What if the neuropathy doesn't go away?
It's almost like I am scared to be happy for me. A part of me figures the second I begin to celebrate, something else will fall apart.
I know, not a good way to come out of the hardest fight of my life.
I'm working on it. It's scary to be optimistic after something like this has happened.
I will get there. I promise.
2013, here I come!
Sunday, December 30, 2012
Wednesday, December 26, 2012
Dear Cancer
"Dear Cancer,
I just wanted to thank you for coming into my life. It has been a wonderful journey! When I was diagnosed with you, I had to have you surgically removed. This involved the removal of 6 inches of colon and 15 lymph nodes. You sneaky little shit, you got into 7 of those lymph nodes! That meant I had to do chemo! Yippee!
What did chemo bless me with? Oh, let me think...let's start with the wonderful, slimy sensation in my mouth that causes me to not be able to eat or drink comfortably. Don't forget the cold sensitivity, which has caused me to not be able to eat or drink anything cold for the last five months. Who needs a cold, refreshing drink here and there...especially in the summer? Certainly not me!
Oh, I sleep like a baby...at least 12 hours a day. You did a great job of getting rid of the insomnia I had earlier this year. Now, I can't seem to get enough sleep!
I used to be such a busy-body...always cleaning, running errands, etc. Now, I have a hard time walking a flight of stairs. Life is so much more relaxing, now that I can't clean my own house or run my own errands!
Then, there is the 50 or so strands of hair I have left. How quickly they dry! To think, I used to spend a half an hour or so, drying my hair in the morning. I have so much more time on my hands.
Eyebrows? They have plucked themselves, to the point of almost non-existence. Eyelashes? Who needs them? Facial hair is such a bother!
Oh, and I have developed this beautiful green tinge to my skin. I have always loved green! How did you know?
Don't forget the neuropathy! You know, that pleasant feeling you get when your foot has fallen asleep and is now waking up? That tingly feeling that makes it hard to walk? That's my feet, 24/7! And, if it happens to go away, all I have to do to bring it back, is blow my nose! It's great! My hands don't have this feeling 24/7, only when I touch things that are colder than room temperature. I make sure to do it often, just to be sure it's still there.
Finally, there's the weight gain. How nice of you to give me an extra 50 pounds of insulation to protect me from the cold winter. I knew you cared.
Thanks again for coming into my life, cancer. I truly feel blessed by your presence."
-Said NO ONE. EVER.
Starting tomorrow, I can look forward to these things slowly going away FOR GOOD. After dealing with this for 5 months, it seems too good to be true.
Normalcy, here I come.
Cancer gets one more swing, and then I am on my way.
I just wanted to thank you for coming into my life. It has been a wonderful journey! When I was diagnosed with you, I had to have you surgically removed. This involved the removal of 6 inches of colon and 15 lymph nodes. You sneaky little shit, you got into 7 of those lymph nodes! That meant I had to do chemo! Yippee!
What did chemo bless me with? Oh, let me think...let's start with the wonderful, slimy sensation in my mouth that causes me to not be able to eat or drink comfortably. Don't forget the cold sensitivity, which has caused me to not be able to eat or drink anything cold for the last five months. Who needs a cold, refreshing drink here and there...especially in the summer? Certainly not me!
Oh, I sleep like a baby...at least 12 hours a day. You did a great job of getting rid of the insomnia I had earlier this year. Now, I can't seem to get enough sleep!
I used to be such a busy-body...always cleaning, running errands, etc. Now, I have a hard time walking a flight of stairs. Life is so much more relaxing, now that I can't clean my own house or run my own errands!
Then, there is the 50 or so strands of hair I have left. How quickly they dry! To think, I used to spend a half an hour or so, drying my hair in the morning. I have so much more time on my hands.
Eyebrows? They have plucked themselves, to the point of almost non-existence. Eyelashes? Who needs them? Facial hair is such a bother!
Oh, and I have developed this beautiful green tinge to my skin. I have always loved green! How did you know?
Don't forget the neuropathy! You know, that pleasant feeling you get when your foot has fallen asleep and is now waking up? That tingly feeling that makes it hard to walk? That's my feet, 24/7! And, if it happens to go away, all I have to do to bring it back, is blow my nose! It's great! My hands don't have this feeling 24/7, only when I touch things that are colder than room temperature. I make sure to do it often, just to be sure it's still there.
Finally, there's the weight gain. How nice of you to give me an extra 50 pounds of insulation to protect me from the cold winter. I knew you cared.
Thanks again for coming into my life, cancer. I truly feel blessed by your presence."
-Said NO ONE. EVER.
Starting tomorrow, I can look forward to these things slowly going away FOR GOOD. After dealing with this for 5 months, it seems too good to be true.
Normalcy, here I come.
Cancer gets one more swing, and then I am on my way.
Tuesday, December 25, 2012
Merry Christmas
Merry Christmas!
We had a nice Christmas. We celebrated with one set of kids/grandkids on Sunday, which was a nice time. Christmas Eve was spent snuggling with the puppers and watching them play with/destroy their new toys. Today, we got together with my side of the family for a nice brunch. All in all, it was a nice holiday.
I am very fortunate that my chemo schedule has allowed me to celebrate the holidays on a "good week". I was able to do some of the things I love to do (make candy and lefse), and enjoy time spent with family.
I have had issues with the neuropathy in my calves and feet. I have been doing a lot of standing (while making candy and lefse) and it's definitely taking it's toll. Hopefully, it clears up after we are all done.
I am so pumped to get my last treatment done with. I am still in denial that the end of the chemo road is so close. It just seems too good to be true.
I was talking with my uncle today, who is also going through a chemo regimen for prostate/bone cancer. We started talking about empathy, and how you tend not to acquire it until you have "been there". Having cancer has definitely made me more empathetic...not only to cancer, but to other ailments as well. I feel like it has made me more aware of other people. It has also made me more open to new people, letting more people in to my world. I have made more friends in that last six months than I have in a decade.
I am not about to say I am grateful for my cancer, I'm still pretty pissed at it.
I do think that having cancer has changed me, and I don't think I am done changing.
It has been quite the road, and I am about to the end of it.
Thank you, God, for giving me the strength to walk it.
We had a nice Christmas. We celebrated with one set of kids/grandkids on Sunday, which was a nice time. Christmas Eve was spent snuggling with the puppers and watching them play with/destroy their new toys. Today, we got together with my side of the family for a nice brunch. All in all, it was a nice holiday.
I am very fortunate that my chemo schedule has allowed me to celebrate the holidays on a "good week". I was able to do some of the things I love to do (make candy and lefse), and enjoy time spent with family.
I have had issues with the neuropathy in my calves and feet. I have been doing a lot of standing (while making candy and lefse) and it's definitely taking it's toll. Hopefully, it clears up after we are all done.
I am so pumped to get my last treatment done with. I am still in denial that the end of the chemo road is so close. It just seems too good to be true.
I was talking with my uncle today, who is also going through a chemo regimen for prostate/bone cancer. We started talking about empathy, and how you tend not to acquire it until you have "been there". Having cancer has definitely made me more empathetic...not only to cancer, but to other ailments as well. I feel like it has made me more aware of other people. It has also made me more open to new people, letting more people in to my world. I have made more friends in that last six months than I have in a decade.
I am not about to say I am grateful for my cancer, I'm still pretty pissed at it.
I do think that having cancer has changed me, and I don't think I am done changing.
It has been quite the road, and I am about to the end of it.
Thank you, God, for giving me the strength to walk it.
Saturday, December 22, 2012
Almost There!
Merry Christmas, everyone!
Of course, this time of year causes one to reflect. I am trying so hard to stay looking forward. One more treatment, and we're DONE! Looking back on the year makes me mad, but grateful at the same time. I am mad at cancer, and how it has affected so many lives close to me. I am grateful mine was caught when it was, giving me a chance to fight it and WIN.
I have so many people that I am grateful for. So many people have come forward and offered up prayers and encouragement, I can't thank everyone enough for their support.
The timing of my treatments has been perfect. I am able to enjoy my "good week" for the holidays. I have done some candy making, and helped mom make lefse today. I know Gramma was there in spirit, proudly watching us. I love carrying on the Scandinavian traditions she taught us:
1. Never make just a single batch of anything.
2. Make it with love.
3. Give it away.
Please take time to reflect on what you are grateful for this year. Cherish it, and use it to inspire a fantastic 2013.
Of course, this time of year causes one to reflect. I am trying so hard to stay looking forward. One more treatment, and we're DONE! Looking back on the year makes me mad, but grateful at the same time. I am mad at cancer, and how it has affected so many lives close to me. I am grateful mine was caught when it was, giving me a chance to fight it and WIN.
I have so many people that I am grateful for. So many people have come forward and offered up prayers and encouragement, I can't thank everyone enough for their support.
The timing of my treatments has been perfect. I am able to enjoy my "good week" for the holidays. I have done some candy making, and helped mom make lefse today. I know Gramma was there in spirit, proudly watching us. I love carrying on the Scandinavian traditions she taught us:
1. Never make just a single batch of anything.
2. Make it with love.
3. Give it away.
Please take time to reflect on what you are grateful for this year. Cherish it, and use it to inspire a fantastic 2013.
Monday, December 17, 2012
Cancer, you suck!
Today, I am pissed off at cancer.
Not because of what it has done to me. Personally, I think I had it coming. I worked at "chemical saturated" jobs for decades, smoked for 20+ years, ate a shitty diet.
What pisses me off is when it happens to an innocent child.
Leukemia in our grandson. Why?
A coworker's 14 year old son just died yesterday from a malignant brain tumor that was discovered 3 weeks ago. Why?
We have landed on the moon, landed a robot on Mars. Why the hell can't we figure out how to get rid of this nasty disease?
It's not fair when it happens to kids.
It's downright cruel.
Not because of what it has done to me. Personally, I think I had it coming. I worked at "chemical saturated" jobs for decades, smoked for 20+ years, ate a shitty diet.
What pisses me off is when it happens to an innocent child.
Leukemia in our grandson. Why?
A coworker's 14 year old son just died yesterday from a malignant brain tumor that was discovered 3 weeks ago. Why?
We have landed on the moon, landed a robot on Mars. Why the hell can't we figure out how to get rid of this nasty disease?
It's not fair when it happens to kids.
It's downright cruel.
Friday, December 14, 2012
The second to the last punch
#11 is in progress, pump comes off tomorrow morning. Then fluids for 2 days and I am free.
I feel like crap, but it helps to know that this is cancer's second to the last punch. One more, and I'm DONE!!!
Woot!
I left the infusion suite with bittersweet feelings. These nurses and doctors have become part of my family. I had my favorite infusion nurse, Mel, yesterday. I am going to miss her humor and spunk. Hopefully, I can connect through facebook with these people to stay in touch.
My visits to the U of M are far from being done...I will still have to have CT scans and bloodwork done every 2 months. I think this goes on for a year, and then the frequency is lessened to 6 months? Not sure. I will still have my chance to walk through the infusion suite and say hi to my favorite people.
I have taken to wearing scarves (mom and I made a ton of them in the beginning of my hair loss). I wore one yesterday that had a ton of metallic print on it. I figured I could sit by a sunny window and be a disco ball for the staff. It didn't work, but my efforts were appreciated.
So, #11, you're kicking my butt, but I will get up again. We are too far into this to lay down and die. I will make it.
I WILL MAKE IT!
I feel like crap, but it helps to know that this is cancer's second to the last punch. One more, and I'm DONE!!!
Woot!
I left the infusion suite with bittersweet feelings. These nurses and doctors have become part of my family. I had my favorite infusion nurse, Mel, yesterday. I am going to miss her humor and spunk. Hopefully, I can connect through facebook with these people to stay in touch.
My visits to the U of M are far from being done...I will still have to have CT scans and bloodwork done every 2 months. I think this goes on for a year, and then the frequency is lessened to 6 months? Not sure. I will still have my chance to walk through the infusion suite and say hi to my favorite people.
I have taken to wearing scarves (mom and I made a ton of them in the beginning of my hair loss). I wore one yesterday that had a ton of metallic print on it. I figured I could sit by a sunny window and be a disco ball for the staff. It didn't work, but my efforts were appreciated.
So, #11, you're kicking my butt, but I will get up again. We are too far into this to lay down and die. I will make it.
I WILL MAKE IT!
Tuesday, December 11, 2012
The Final Stretch
Day after tomorrow is #11. After that, only one more to go.
You would think I would be ecstatic, but I'm not. I am fretting the worst month of my life, which starts 48 hours from now.
You may think I am being pessimistic or negative. I'm not...it's reality.
Each one of these treatments has been worse than the previous. This is the hardest thing I have ever had to do. Nothing tells me that #11 won't be nastier than #10. It will be nastier, and then there will be #12.
This week, I have found myself absolutely exhausted and sick of the fight. Getting dressed in the morning is an effort. I have stopped dealing with my hair...hats are so much easier. I am sick of putting up the front of a "not sick" person.
In my head, I put up the front so people won't worry about me. This is unrealistic. If people love me, they will worry, even if I look well. They know I am going through hell.
I can't do the front thing anymore. What you see is how I feel.
Between now and the end of the year, I have to take it day by day. I have a small amount of energy that I decide what it gets spent on. It will be like rationing food during a crisis...I have to use it wisely and not waste it on fronts or petty bullshit.
One more day, and the claw to the top begins.
You would think I would be ecstatic, but I'm not. I am fretting the worst month of my life, which starts 48 hours from now.
You may think I am being pessimistic or negative. I'm not...it's reality.
Each one of these treatments has been worse than the previous. This is the hardest thing I have ever had to do. Nothing tells me that #11 won't be nastier than #10. It will be nastier, and then there will be #12.
This week, I have found myself absolutely exhausted and sick of the fight. Getting dressed in the morning is an effort. I have stopped dealing with my hair...hats are so much easier. I am sick of putting up the front of a "not sick" person.
In my head, I put up the front so people won't worry about me. This is unrealistic. If people love me, they will worry, even if I look well. They know I am going through hell.
I can't do the front thing anymore. What you see is how I feel.
Between now and the end of the year, I have to take it day by day. I have a small amount of energy that I decide what it gets spent on. It will be like rationing food during a crisis...I have to use it wisely and not waste it on fronts or petty bullshit.
One more day, and the claw to the top begins.
Sunday, December 9, 2012
Snow
It's snowing today. Our first real snow event of the year. I am glad it has held off so long, but hate the fact that it's here. Winter has arrived in Minnesota.
Blech.
I have finally gotten over the bug that has been with me for a couple of weeks. It took a trip to the clinic and a blast of antibiotics. It went into my ear last weekend...that was the straw that broke the camel's back. I knew my own immune system wasn't going to take care of it before it got bad. Fortunately, the antibiotics worked and my eardrum is still intact! I still have some congestion, but I am definitely on the mend. Just in time for another treatment...ugh.
It's frustrating to get sick on a "good week". It makes me feel like I haven't gotten a break from being sick. Fortunately I have a few days to enjoy being able to eat and drink without mouth symptoms, and having more energy than I did last week...which isn't saying much.
Every Christmas for the past few years, my mom and I have been carrying on my Gramma's tradition of making lefse. We learned how to do it on our own, taking from memories of Gramma and Betty making it and a collage of YouTube videos.
A flour fire, and 3 hours later, we had about 20 pieces of lefse that looked beautiful, but crumbled when you tried to pick it up. We considered it a success, and knew Gramma was looking down on us, laughing so hard. The next year, we tried a different recipe and it was an absolute success. I have found it to be the only food I can eat right after treatment the last few rounds. To me, it's a sign that Gramma is with me, offering comfort.
Mom also makes caramels every year. Last night, we spent two hours cutting and wrapping 20 pounds of delicious, buttery caramels. It took a lot out of me, but I was glad to participate in the tradition. Hopefully, I can help with the lefse this year.
I'm trying to get into the Christmas spirit, but this year it's hard. Two more treatments will happen between now and the end of the year. It's good to know the end is near, but this is the steepest part of the climb. We will get to the top, and kick cancer right off the cliff.
Deep breaths. I can do this.
Blech.
I have finally gotten over the bug that has been with me for a couple of weeks. It took a trip to the clinic and a blast of antibiotics. It went into my ear last weekend...that was the straw that broke the camel's back. I knew my own immune system wasn't going to take care of it before it got bad. Fortunately, the antibiotics worked and my eardrum is still intact! I still have some congestion, but I am definitely on the mend. Just in time for another treatment...ugh.
It's frustrating to get sick on a "good week". It makes me feel like I haven't gotten a break from being sick. Fortunately I have a few days to enjoy being able to eat and drink without mouth symptoms, and having more energy than I did last week...which isn't saying much.
Every Christmas for the past few years, my mom and I have been carrying on my Gramma's tradition of making lefse. We learned how to do it on our own, taking from memories of Gramma and Betty making it and a collage of YouTube videos.
A flour fire, and 3 hours later, we had about 20 pieces of lefse that looked beautiful, but crumbled when you tried to pick it up. We considered it a success, and knew Gramma was looking down on us, laughing so hard. The next year, we tried a different recipe and it was an absolute success. I have found it to be the only food I can eat right after treatment the last few rounds. To me, it's a sign that Gramma is with me, offering comfort.
Mom also makes caramels every year. Last night, we spent two hours cutting and wrapping 20 pounds of delicious, buttery caramels. It took a lot out of me, but I was glad to participate in the tradition. Hopefully, I can help with the lefse this year.
I'm trying to get into the Christmas spirit, but this year it's hard. Two more treatments will happen between now and the end of the year. It's good to know the end is near, but this is the steepest part of the climb. We will get to the top, and kick cancer right off the cliff.
Deep breaths. I can do this.
Tuesday, December 4, 2012
Quit grabbing my ankles!
With #10 in the record books, I am dealing with another cold and crazy neuropathy. It feels as if someone is randomly grabbing my ankles, then letting go. A bit freaky when standing by the bed in an empty house. My feet are sluggish, which poses challenges on stairs at times. Floppy feet.
I'm not sure if the neuropathy is getting worse, or just reacting to the colder weather. It seems to only go away when my feet are uncomfortably hot...sweaty hot. I have started taking Neurontin to see if the symptoms will subside. Time will tell. I hate taking another med, but this is getting old.
My mouth doesn't seem to be as funky this time around. I am already able to eat without being slimed. This is a good thing, as I have a REALLY hard time drinking when the slimey thing is going on. Once it goes away, I find myself slamming water like crazy.
In the past week, a coworker has received some bad news. His 14 year old son has been diagnosed with a brain tumor. They are in the process of biopsy, will have results on Thursday. Following his story has dredged up memories of when my oldest stepson had his car accident. I feel for this family, as I know the fear they are dealing with. They, too, are in their "earmark". It makes one wonder why things happen like they do...why things happen to innocent children.
If we had an answer, would we accept it?
Here is his Caring Bridge site:
http://www.caringbridge.org/visit/nickcisewski
Please say a prayer for Nick and his family.
I'm not sure if the neuropathy is getting worse, or just reacting to the colder weather. It seems to only go away when my feet are uncomfortably hot...sweaty hot. I have started taking Neurontin to see if the symptoms will subside. Time will tell. I hate taking another med, but this is getting old.
My mouth doesn't seem to be as funky this time around. I am already able to eat without being slimed. This is a good thing, as I have a REALLY hard time drinking when the slimey thing is going on. Once it goes away, I find myself slamming water like crazy.
In the past week, a coworker has received some bad news. His 14 year old son has been diagnosed with a brain tumor. They are in the process of biopsy, will have results on Thursday. Following his story has dredged up memories of when my oldest stepson had his car accident. I feel for this family, as I know the fear they are dealing with. They, too, are in their "earmark". It makes one wonder why things happen like they do...why things happen to innocent children.
If we had an answer, would we accept it?
Here is his Caring Bridge site:
http://www.caringbridge.org/visit/nickcisewski
Please say a prayer for Nick and his family.
Sunday, December 2, 2012
#10 is in the record books
I am on my last quart of hydration, and then the needle comes out and I am free! Woot!
My mouth is still pretty funky...everything is slimy. Oatmeal is about all I can eat without getting slimed. Whatever works!
The neuropathy got bad last night...my feet weren't working for a few hours after being outside with the dogs. I probably didn't wear the proper clothing...should have worn 2 pairs of sock and boots to keep the cold away. So hard to get used to...coming from a girl who regularly walked in the snow barefoot.
We have been trying to get in exercise every day that we can. One outlet for enjoyable exercise for us is to take the dogs to the dog park. Since the weather has been so mild, we are still able to bring the dogs out for some good entertainment. The dog park is a new thing to us this year...I never thought our boy, Maverick, would behave well enough. He tends to be a "red zone" dog when leashed. He is much better off leash, and has taken on the duty to eliminate any conflict in the park. Little Rizzo has turned out to be the social butterfly who loves to run, run, run. It is fun to watch all the dogs run and socialize. We have met some great people there, too.
I am glad number 10 is done. So glad to think I only have 2 to go.
Thanks to all who have offered prayers, kind words, cards, meals, and donations. It means so much!!!
My mouth is still pretty funky...everything is slimy. Oatmeal is about all I can eat without getting slimed. Whatever works!
The neuropathy got bad last night...my feet weren't working for a few hours after being outside with the dogs. I probably didn't wear the proper clothing...should have worn 2 pairs of sock and boots to keep the cold away. So hard to get used to...coming from a girl who regularly walked in the snow barefoot.
We have been trying to get in exercise every day that we can. One outlet for enjoyable exercise for us is to take the dogs to the dog park. Since the weather has been so mild, we are still able to bring the dogs out for some good entertainment. The dog park is a new thing to us this year...I never thought our boy, Maverick, would behave well enough. He tends to be a "red zone" dog when leashed. He is much better off leash, and has taken on the duty to eliminate any conflict in the park. Little Rizzo has turned out to be the social butterfly who loves to run, run, run. It is fun to watch all the dogs run and socialize. We have met some great people there, too.
I am glad number 10 is done. So glad to think I only have 2 to go.
Thanks to all who have offered prayers, kind words, cards, meals, and donations. It means so much!!!
Thursday, November 29, 2012
Donation Website
I haven't announced this officially, so I am doing so now.
I started a donations page to help pay for my medical expenses. We have excellent insurance...my cost for treatment has exceeded $250,000. Thankfully, most is covered by our insurance. Right now, we only have to pay for office visits, which adds up to $500-$750/month.
I was introduced to the GoFundMe website by another colon cancer warrior. It seemed like an easy way to do things.
People ask if there is anything they can do for us. This is one way to help. To donate, click the "GoFundMe" button on the right of my blog page. This will take you to the GoFundMe page, which walks you through the donation. Any amount helps. Any overages will be donated to The Colon Cancer Alliance.
If you can't donate, you can help my sharing this link:
http://www.gofundme.com/1k50s8
on your own Facebook page.
For those who have already donated, thank you so much. It is REALLY hard to ask for help. We hope to be able to pay it forward when we get back to normalcy.
I started a donations page to help pay for my medical expenses. We have excellent insurance...my cost for treatment has exceeded $250,000. Thankfully, most is covered by our insurance. Right now, we only have to pay for office visits, which adds up to $500-$750/month.
I was introduced to the GoFundMe website by another colon cancer warrior. It seemed like an easy way to do things.
People ask if there is anything they can do for us. This is one way to help. To donate, click the "GoFundMe" button on the right of my blog page. This will take you to the GoFundMe page, which walks you through the donation. Any amount helps. Any overages will be donated to The Colon Cancer Alliance.
If you can't donate, you can help my sharing this link:
http://www.gofundme.com/1k50s8
on your own Facebook page.
For those who have already donated, thank you so much. It is REALLY hard to ask for help. We hope to be able to pay it forward when we get back to normalcy.
Wednesday, November 28, 2012
Bring it on, number 10
Tomorrow is #10. Frankly, I would rather stick a hot poker in my eye than do another treatment.
But, if I want to live, it's what I gotta do.
I've been trying to focus on what cancer has NOT taken from me.
Cooking is one thing I can still do as well as I did when I didn't have cancer. I enjoyed cooking for the kids when they were here for Thanksgiving. The day before, I cooked chicken tacos, and they were asking their mom to make them yesterday :-). I kept things easy and good.
I won't be cooking for the next few days, I will be too tired to do it. But, to know I only have 2 more torture sessions left will make it worth it. I have a nagging feeling that the next month is going to be the hardest month of my life, but it will be done.
Finally.
But, if I want to live, it's what I gotta do.
I've been trying to focus on what cancer has NOT taken from me.
Cooking is one thing I can still do as well as I did when I didn't have cancer. I enjoyed cooking for the kids when they were here for Thanksgiving. The day before, I cooked chicken tacos, and they were asking their mom to make them yesterday :-). I kept things easy and good.
I won't be cooking for the next few days, I will be too tired to do it. But, to know I only have 2 more torture sessions left will make it worth it. I have a nagging feeling that the next month is going to be the hardest month of my life, but it will be done.
Finally.
Sunday, November 25, 2012
Hitting Walls
So, I am about to sound like a hypocrite after my last post.
In the past couple of days, I have caught a cold. Any energy I had mustered to enjoy the holidays has been zapped by said cold, and it has left me in...ass mode.
I am pissed off at cancer. It has taken so many things from me. I didn't have the choice to keep them...they just left. Hair, nice skin, metabolism, money, sanity...
I hit a wall yesterday, after taking a shower and losing a TON of hair, sweating so bad while trying to look somewhat normal with makeup and my hair being "done"...
I am sick of fighting. I am sick of feeling like shit. I am sick of not being able to do the things I enjoy.
I looked in the mirror yesterday, after the "fight", and saw a sick person. My efforts were useless. There was no hiding from it; it's not leaving. I look sick, because I am. Chemotherapy took Ronda away.
The hubby came home, and I told him I was having a hard time. He comforted me while I sobbed...reminding me of the good things. I still have him and the dogs. I have 3/4 of this battle under my belt. I am kicking cancer's ass. My hair will come back. The weight will come off. The puffy face will go away.
Life, as we knew it, will return.
I will return.
He's right. I need to have patience. Patience with myself and the process. Instant gratification is not an option. One more month, and we're on the road to normalcy.
I can do this.
Another wall hit, and conquered.
Fuck you, cancer.
In the past couple of days, I have caught a cold. Any energy I had mustered to enjoy the holidays has been zapped by said cold, and it has left me in...ass mode.
I am pissed off at cancer. It has taken so many things from me. I didn't have the choice to keep them...they just left. Hair, nice skin, metabolism, money, sanity...
I hit a wall yesterday, after taking a shower and losing a TON of hair, sweating so bad while trying to look somewhat normal with makeup and my hair being "done"...
I am sick of fighting. I am sick of feeling like shit. I am sick of not being able to do the things I enjoy.
I looked in the mirror yesterday, after the "fight", and saw a sick person. My efforts were useless. There was no hiding from it; it's not leaving. I look sick, because I am. Chemotherapy took Ronda away.
The hubby came home, and I told him I was having a hard time. He comforted me while I sobbed...reminding me of the good things. I still have him and the dogs. I have 3/4 of this battle under my belt. I am kicking cancer's ass. My hair will come back. The weight will come off. The puffy face will go away.
Life, as we knew it, will return.
I will return.
He's right. I need to have patience. Patience with myself and the process. Instant gratification is not an option. One more month, and we're on the road to normalcy.
I can do this.
Another wall hit, and conquered.
Fuck you, cancer.
Wednesday, November 21, 2012
Happy Thanksgiving!!!
Tomorrow is Thanksgiving, and I am so filled with gratitude.
I am thankful for my wonderful husband who has been such a rock through this whole shitty cancer ordeal.
I am thankful for family, friends, and coworkers who have been so caring and supportive.
I am thankful for my team of doctors who saved my life.
Happy Thanksgiving to all!
I am thankful for my wonderful husband who has been such a rock through this whole shitty cancer ordeal.
I am thankful for family, friends, and coworkers who have been so caring and supportive.
I am thankful for my team of doctors who saved my life.
Happy Thanksgiving to all!
Sunday, November 11, 2012
What November Brings
Before this whole cancer thing, I had an "earmark" to which I compared everything to. It was when my oldest stepson had a horrific car accident that put him in a coma for 17 days. He had to learn how to walk and talk all over again. It happened on November 29, 1996. The day after Thanksgiving.
When we got the call, we packed up and headed to Traverse City in a lake effect blizzard through the entire Upper Peninsula of Michigan. The next 3 months were a blur of snowstorms, coma scales, and grasping onto the slightest hint of consciousness...the slightest hint that he was "still in there".
By the grace of God, therapy and time have produced a functional young man who now has a wife and family. We are so grateful. We came so close to losing him. It was a time in our lives that presented many challenges, for all of us. But, we made it.
Since then, life's challenges were met with, "We made it through Young Ron's accident, we can make it through anything."
It worked.
Two years ago, on November 6, 2010, my second oldest stepson and family were presented with their own "earmark". Their 4 year old son, Aidan, was diagnosed with leukemia. After more than a year of harsh chemo and many health scares, Aidan is now in the maintenance phase of his treatment and thriving. Many, many prayers have been sent their way...knowing this was their "earmark" that they would compare everything else to. Aidan's mom and dad have shown such strength. I don't know how they do it.
It is tempting to view November as a dark month, a month when "bad things happen".
I can't.
November is a reminder that there is hope that bad things can bring good. They bring gratitude and perspective. Once an "earmark" is experienced, the little things that tie one in knots tend to be pushed to the side. Things like appreciation of family, friends, and a higher power come to the forefront.
Simple things are cherished.
Our new "earmark" is here. The tools we acquire in this journey will be used to deal with the next.
When we got the call, we packed up and headed to Traverse City in a lake effect blizzard through the entire Upper Peninsula of Michigan. The next 3 months were a blur of snowstorms, coma scales, and grasping onto the slightest hint of consciousness...the slightest hint that he was "still in there".
By the grace of God, therapy and time have produced a functional young man who now has a wife and family. We are so grateful. We came so close to losing him. It was a time in our lives that presented many challenges, for all of us. But, we made it.
Since then, life's challenges were met with, "We made it through Young Ron's accident, we can make it through anything."
It worked.
Two years ago, on November 6, 2010, my second oldest stepson and family were presented with their own "earmark". Their 4 year old son, Aidan, was diagnosed with leukemia. After more than a year of harsh chemo and many health scares, Aidan is now in the maintenance phase of his treatment and thriving. Many, many prayers have been sent their way...knowing this was their "earmark" that they would compare everything else to. Aidan's mom and dad have shown such strength. I don't know how they do it.
It is tempting to view November as a dark month, a month when "bad things happen".
I can't.
November is a reminder that there is hope that bad things can bring good. They bring gratitude and perspective. Once an "earmark" is experienced, the little things that tie one in knots tend to be pushed to the side. Things like appreciation of family, friends, and a higher power come to the forefront.
Simple things are cherished.
Our new "earmark" is here. The tools we acquire in this journey will be used to deal with the next.
Thursday, November 1, 2012
#8
I am in the process of #8...hooked to a pump for 2 days, then it's coma time.
I received the results of my CEA (2.4...still normal!), and CT Scan (also normal!). I am still considered "No Evidence of Disease". The oncologist is thrilled with my progress.
The colder weather has definitely brought out the neuropathy in full force. I absolutely HAVE to wear gloves and a scarf when going outside. Oh, and shoes. I am one to go barefoot in the snow. None of that this year.
When this one is done, I am 2/3 the way there! I am hoping to finish up by the end of the year.
I will post more later when this one is done and I have more energy.
Thanks to all for the good thoughts and prayers. They are truly appreciated!
I received the results of my CEA (2.4...still normal!), and CT Scan (also normal!). I am still considered "No Evidence of Disease". The oncologist is thrilled with my progress.
The colder weather has definitely brought out the neuropathy in full force. I absolutely HAVE to wear gloves and a scarf when going outside. Oh, and shoes. I am one to go barefoot in the snow. None of that this year.
When this one is done, I am 2/3 the way there! I am hoping to finish up by the end of the year.
I will post more later when this one is done and I have more energy.
Thanks to all for the good thoughts and prayers. They are truly appreciated!
Wednesday, October 24, 2012
Normal
Number seven has proven to be an energy zapper, just like all the rest. The neuropathy has stayed the same, which is good. It's almost gone, 6 days post-infusion. Now if I could just get rid of this exhaustion...
Today, I have a CT scan and CEA test. I am hoping both come back normal.
Normal.
Oh, how it's definition has changed in six months.
Normal never used to include test results.
Normal used to include work hours and weekend plans.
Someday, it will again.
Until then, I have to accept "normal" for what it is, no matter how hard it is to accept.
It's my normal.
Today, I have a CT scan and CEA test. I am hoping both come back normal.
Normal.
Oh, how it's definition has changed in six months.
Normal never used to include test results.
Normal used to include work hours and weekend plans.
Someday, it will again.
Until then, I have to accept "normal" for what it is, no matter how hard it is to accept.
It's my normal.
Saturday, October 13, 2012
41
Number six was a hard one. Sneaky. I came out of it thinking it was going to be easier, but then I hit a wall and slept for 3 days. I felt like a hibernating bear. Sleep. Eat. Sleep some more.
The neuropathy is getting worse...not sure if it is because it's colder outside (we had to turn on the heat for the first time this year) or if it's truly getting worse. If my hands or feet get slightly cold, they get tingly, and then feel like they are going to go into a cramp. Not painful, just debilitating. The "pre-cramp" feeling is followed by very slow reacting, almost like they are trying to work in thick mud. Definitely going to have to have gloves everywhere for winter.
With it being Breast Cancer Awareness month, I have been hearing/seeing a lot of cancer stories. The ones that hit me hardest are the ones of young mothers who are diagnosed with advanced stage cancer. How these women can find it in them to fight this nasty disease, AND be a mom, I can't fathom.
I do have a bit of a rant, regarding Breast Cancer and all the media exposure it receives. Please, don't get me wrong, I absolutely support breast cancer awareness. It is a horrible disease that affects/kills too many women.
What I don't support, is the "Save the Hooters" type campaigns. To me, this says, "Save the part that men like to look at, never mind the women they are attached to!" It is a slap in the face to anyone who is fighting/has fought the disease.
Please, be respectful, and acknowledge the person who suffers from the disease. A diagnosis of cancer does not change the person's worth or desire to be acknowledged as themselves. They have not been reduced to a body part, or lack thereof. They are still the person they were prior to being diagnosed.
Ok, rant complete.
The last day of my drug pump was my birthday. It was filled with mixed emotions...I was pissed at cancer for making me deal with chemo on my birthday, but felt lucky to be alive. I, again, thanked my now-absent gall bladder for acting up, and causing the CT scan that discovered the tumor. It felt good to put 40 to rest and christen 41 with optimism that it will go better than it's predecessor.
Now that I am on the upward swing, it's time to celebrate not only my birthday, but our 17th wedding anniversary as well. I am so lucky to have married my best friend, my soul mate We make a good team. I couldn't ask for a better man to go through this journey of life with. Seventeen years. Wow. To think, when my parents were so concerned about our age difference when we started dating, I said, "Geez, ma, don't worry about it. It's not like I'm gonna marry the guy!"
I guess I did. :-)
So, kiss my ass number six...you're history. Send over your friend, number seven...let's see what they've got.
The neuropathy is getting worse...not sure if it is because it's colder outside (we had to turn on the heat for the first time this year) or if it's truly getting worse. If my hands or feet get slightly cold, they get tingly, and then feel like they are going to go into a cramp. Not painful, just debilitating. The "pre-cramp" feeling is followed by very slow reacting, almost like they are trying to work in thick mud. Definitely going to have to have gloves everywhere for winter.
With it being Breast Cancer Awareness month, I have been hearing/seeing a lot of cancer stories. The ones that hit me hardest are the ones of young mothers who are diagnosed with advanced stage cancer. How these women can find it in them to fight this nasty disease, AND be a mom, I can't fathom.
I do have a bit of a rant, regarding Breast Cancer and all the media exposure it receives. Please, don't get me wrong, I absolutely support breast cancer awareness. It is a horrible disease that affects/kills too many women.
What I don't support, is the "Save the Hooters" type campaigns. To me, this says, "Save the part that men like to look at, never mind the women they are attached to!" It is a slap in the face to anyone who is fighting/has fought the disease.
Please, be respectful, and acknowledge the person who suffers from the disease. A diagnosis of cancer does not change the person's worth or desire to be acknowledged as themselves. They have not been reduced to a body part, or lack thereof. They are still the person they were prior to being diagnosed.
Ok, rant complete.
The last day of my drug pump was my birthday. It was filled with mixed emotions...I was pissed at cancer for making me deal with chemo on my birthday, but felt lucky to be alive. I, again, thanked my now-absent gall bladder for acting up, and causing the CT scan that discovered the tumor. It felt good to put 40 to rest and christen 41 with optimism that it will go better than it's predecessor.
Now that I am on the upward swing, it's time to celebrate not only my birthday, but our 17th wedding anniversary as well. I am so lucky to have married my best friend, my soul mate We make a good team. I couldn't ask for a better man to go through this journey of life with. Seventeen years. Wow. To think, when my parents were so concerned about our age difference when we started dating, I said, "Geez, ma, don't worry about it. It's not like I'm gonna marry the guy!"
I guess I did. :-)
So, kiss my ass number six...you're history. Send over your friend, number seven...let's see what they've got.
Monday, October 1, 2012
Almost Halfway There!
Another great weekend, weather-wise! We managed to get down to the river once, on Saturday, to do some fishing. We brought the dogs, and they loved it. Ron caught one fish, so our trip was "validated". I had fun watching Maverick want, so badly, to go fetch the bait Ron was casting to the fish. Rizzo was more interested in digging up smelly things.
I have been working really hard on keeping my mind in positive mode. These two days (the Monday and Tuesday before treatment) are always the worst. When I catch myself dreading things, I remind myself that after this one we are halfway there. I can and will do this. It is saving my life by killing the cancer cells.
I reread my blog from day one a couple of days ago. It was really a reality check of how lucky I am that my cancer was found. This stuff really had the plan of killing me. So sneaky, so silent. My liver was likely it's next target. That would have put me at Stage IV. There is no Stage V.
Wow. So close.
When you are in the depths of chemo, you have the tendency to forget the gratitude because you don't understand why you were chosen for this hell. You don't understand how anyone survived it. You hate the hell out of cancer, and become jealous of anyone who doesn't have it. You wonder why, with all our "smart human" brains, we can't cure this thing.
I have no answers, but I do have a new sense of gratitude and a new appreciation for what God has given me. He gave me a body strong enough to fight this thing. He gave me another chance.
I'm gonna run with it.
I have been working really hard on keeping my mind in positive mode. These two days (the Monday and Tuesday before treatment) are always the worst. When I catch myself dreading things, I remind myself that after this one we are halfway there. I can and will do this. It is saving my life by killing the cancer cells.
I reread my blog from day one a couple of days ago. It was really a reality check of how lucky I am that my cancer was found. This stuff really had the plan of killing me. So sneaky, so silent. My liver was likely it's next target. That would have put me at Stage IV. There is no Stage V.
Wow. So close.
When you are in the depths of chemo, you have the tendency to forget the gratitude because you don't understand why you were chosen for this hell. You don't understand how anyone survived it. You hate the hell out of cancer, and become jealous of anyone who doesn't have it. You wonder why, with all our "smart human" brains, we can't cure this thing.
I have no answers, but I do have a new sense of gratitude and a new appreciation for what God has given me. He gave me a body strong enough to fight this thing. He gave me another chance.
I'm gonna run with it.
Tuesday, September 25, 2012
My Own Best Friend
Round 5 has left a bitter taste in my mouth. It's left me tired, weak, and really crabby.
There is this spoiled brat kid in me that keeps saying, "I don't wanna do this anymore!!!"
And then there's the asshole in me that says I should be able to take this in stride...to keep on like nothing's different. Get it done. Quit being a wuss.
But then I am asked what I would say to my best friend if they were going through this nightmare.
I would tell them to listen to their body, rest when it tells them to rest. I would tell them to cut themselves some slack, as this is probably the biggest thing they have ever faced. I would tell them they are doing a kick ass job at kicking cancer's ass. I would tell them not to worry about the fucking laundry.
Today I have to get used to having, and listening to, a new best friend.
Me.
There is this spoiled brat kid in me that keeps saying, "I don't wanna do this anymore!!!"
And then there's the asshole in me that says I should be able to take this in stride...to keep on like nothing's different. Get it done. Quit being a wuss.
But then I am asked what I would say to my best friend if they were going through this nightmare.
I would tell them to listen to their body, rest when it tells them to rest. I would tell them to cut themselves some slack, as this is probably the biggest thing they have ever faced. I would tell them they are doing a kick ass job at kicking cancer's ass. I would tell them not to worry about the fucking laundry.
Today I have to get used to having, and listening to, a new best friend.
Me.
Saturday, September 22, 2012
Cancer Sucks!
Round 5 is done. It has left me with severe fatigue and prickly neuropathy in my hands and feet. Hopefully it subsides in a couple of days. Anything below body temp sets it off...winter is going to suck!
I have slept 16-20 hrs a day for the last 3 days. It's getting old. I feel useless, not being able to do the smallest task without being winded. I really want to do something productive, just to say I did it, but can't. Too tired.
I've said before that Fall is my favorite time of year. I do love it, but anything that triggers any kind of pleasant memory tends to turn into a sobfest right now. It's too easy to look back at a time before cancer, and wish, so hard, that those carefree days were here again.
So, I have to just keep looking forward.
I need to focus on the good things that are happening with my recovery...no evidence of disease, good blood counts, one more round for the record books.
We will get there...
I have slept 16-20 hrs a day for the last 3 days. It's getting old. I feel useless, not being able to do the smallest task without being winded. I really want to do something productive, just to say I did it, but can't. Too tired.
I've said before that Fall is my favorite time of year. I do love it, but anything that triggers any kind of pleasant memory tends to turn into a sobfest right now. It's too easy to look back at a time before cancer, and wish, so hard, that those carefree days were here again.
So, I have to just keep looking forward.
I need to focus on the good things that are happening with my recovery...no evidence of disease, good blood counts, one more round for the record books.
We will get there...
Monday, September 17, 2012
Sliding Into Round 5
Wow, what a beautiful weekend. The weather was PERFECT! Now it feels like Fall again.
When visiting the oncologist prior to Round 4, I was told that I was being "moved to the top of the class", meaning things were going so well, I could start getting every other treatment done at Maple Grove.
Of course, that got blown out of the water by neuropathy in my hands and feet on Thursday (the day after my treatment). This is the one side effect I was told that I needed to tell them about at it's slightest onset.
The reason?
It's the one side effect that can be permanent.
It was at it's worst on Thursday. My feet and hands were...sluggish, like they were moving through mud. And then, there was the slightest bit of tingling in my feet, similar to the end stages of "pins and needles" when your foot is waking up from sitting on it. The sluggishness subsided quickly, but the tingling remained until Saturday. Then, a couple of days ago I was vacuuming and I noticed it in my left foot.
That'll teach me to do housework!
So, I called the nurse, and my oncologist wants me seen at the U this time around so they can tweak things if necessary. Oh well, no big deal. My hands and feet are more important than avoiding a crazy commute.
On a good note, I picked up my wig on Friday! It's perfect!
While I was there (Merle Norman), I thought I would have them fix me up with some new makeup. To me, my skin doesn't look the right color anymore. The girls set me up with a new face that looked like me! It feels really good to look in the mirror and see ME, rather than SICK me.
I cannot say enough good things about the staff of Merle Norman. They treated me so nice, and made sure I was happy with everything. They gave me a little goodie bag of samples. In it, was a card that wished me a speedy recovery. Before I left, one of them gave me a hug. It was a great experience, and I will never forget it. I will surely return, and bring my friends!
So, now that I have "hair backup" and a new face, bring it on #5! We're almost halfway there!
UPDATE: Oh, crap! I totally forgot to share the best news of all! We met with the genetic counselor last week, and it has been determined that my cancer is NOT hereditary. This means several VERY good things...my brother can rest easy, he just has to stay on top of recommended screenings, and I don't have to have any more surgeries to remove "at risk" organs!
The bad thing? I can't blame my parents for EVERYTHING anymore.
I'm kidding, there is no bad thing about it. It was a relief!
Ok, I think that's it for now.
When visiting the oncologist prior to Round 4, I was told that I was being "moved to the top of the class", meaning things were going so well, I could start getting every other treatment done at Maple Grove.
Of course, that got blown out of the water by neuropathy in my hands and feet on Thursday (the day after my treatment). This is the one side effect I was told that I needed to tell them about at it's slightest onset.
The reason?
It's the one side effect that can be permanent.
It was at it's worst on Thursday. My feet and hands were...sluggish, like they were moving through mud. And then, there was the slightest bit of tingling in my feet, similar to the end stages of "pins and needles" when your foot is waking up from sitting on it. The sluggishness subsided quickly, but the tingling remained until Saturday. Then, a couple of days ago I was vacuuming and I noticed it in my left foot.
That'll teach me to do housework!
So, I called the nurse, and my oncologist wants me seen at the U this time around so they can tweak things if necessary. Oh well, no big deal. My hands and feet are more important than avoiding a crazy commute.
On a good note, I picked up my wig on Friday! It's perfect!
While I was there (Merle Norman), I thought I would have them fix me up with some new makeup. To me, my skin doesn't look the right color anymore. The girls set me up with a new face that looked like me! It feels really good to look in the mirror and see ME, rather than SICK me.
I cannot say enough good things about the staff of Merle Norman. They treated me so nice, and made sure I was happy with everything. They gave me a little goodie bag of samples. In it, was a card that wished me a speedy recovery. Before I left, one of them gave me a hug. It was a great experience, and I will never forget it. I will surely return, and bring my friends!
So, now that I have "hair backup" and a new face, bring it on #5! We're almost halfway there!
UPDATE: Oh, crap! I totally forgot to share the best news of all! We met with the genetic counselor last week, and it has been determined that my cancer is NOT hereditary. This means several VERY good things...my brother can rest easy, he just has to stay on top of recommended screenings, and I don't have to have any more surgeries to remove "at risk" organs!
The bad thing? I can't blame my parents for EVERYTHING anymore.
I'm kidding, there is no bad thing about it. It was a relief!
Ok, I think that's it for now.
Thursday, September 6, 2012
Round 4
Round 4 went ok...as good as it could go.
My oncologist is thrilled with my progress. I asked him when I can consider myself to be in remission. He said that is an outdated term, and he uses "No Evidence of Disease", or NED.
I am there now. WOOT!!!
My blood work was good yesterday..."beautiful" in the cancer world. My hemoglobin dropped slightly, but nothing to be concerned about.
The genetic testing for Lynch Syndrome was done on my tumor, and it has been ruled out. YES!!!
We are still moving forward with having the full genetic workup done to determine if there are any other hereditary predispositions for more cancer. I feel this is the best way to be proactive moving forward. I meet with the genetics counselor next Weds.
I went wig shopping earlier this week. I'm not bald yet, but the way things are going, I may be soon. I had a consultation at a well-known hair replacement salon (I am not going to mention the name). After a quick chat about my situation, she asked what I was thinking about price. I said it was being paid by insurance, but I didn't know how much. I asked what the typical insurance company reimbursed.
"Wellll, some plans do 70%, others 90%...it all depends on the plan."
I am fortunate to have a decent insurance plan, so I guessed we were probably in the 80-90% slot. She did a lot of coaching on what to say to the insurance company when inquiring about what they pay. It started to feel...weird.
So we talk about real hair vs. synthetic. Synthetic is easier to care for, real looks better. Synthetic is cheaper, real is more expensive. Makes sense. I tell her synthetic may be my best bet, since I don't want to fuss with maintenance.
She went and grabbed samples for me to try on. One was...wavy...the other two were stick straight, all real hair. Straight is not my thing. I want to look like me. I told her this, and she brings me straight. WTF?
Asking her about the slim pickings, she says that they don't have a lot of curly wigs in stock. If I wanted, they can always perm a real haired wig. They really know what they are doing, and it will look great.
Perm. My immediate thought was of the nightmare of perming my hair as a kid (I didn't condition my hair back then, so didn't know it was curly to begin with), and of how awful and fake the curls looked.
So I grab the wavy one and tried it on. It was exactly my color, and looks exactly like my hair did when it was short. I loved it. LOVED it.
Until I looked at the price tag. $3600.
Am I at a car dealership? Where am I?
"What about synthetic?" I ask.
"Hmmm...we really don't have anything in synthetic that's curly. Let me go look again."
She returns with a DARK red-brown (I am light brown), fuzzy, Halloween grade, piece of shit that had a total of ten curls in it. No other hair, just ten fuzzy curls. I try it on, knowing I will hate it. Yep. Hate it. Can't stand even looking at myself in it. Not. Gonna. Work.
Ok, so if my insurance covered 90%, the one I love would cost me $360. Spendy, but doable. I leave, telling her we would be in contact after I talked with the insurance company. She gave me her card, and had a huge smile on her face when I left. A smile that said *commission!!!!*.
So I call the insurance company. Followed the coaching, step by step. I am transferred to another entity, who covers this type of thing. I restated the coached phrase, "I have a doctor's prescription for a full cranial hair prosthetic for drug induced alopecia".
"Ok, Ms. Allard, for a chemo wig our reimbursement is $250 for the wig and supplies."
I was devastated.
I called the consultant and told her what I will be reimbursed for and that the $3600 wig was out of the picture. With their small inventory of curly wigs, I just didn't think this was a good fit. Her reply was, "Well, we could do a lower priced real hair and perm it?" Nope. Not gonna buy something, have you fry it and hate it. She restated that they were experts in this field, and the really know what they are doing. She ended with, "I'll have to do some homework. Let me call you back."
After sobbing for a couple of hours, wanting my real hair back (NEVER did I think I would be saying that!), my intellectual side returned. That entire visit was choreographed to make me fall in love with that wig. From the "We don't have anything curly," to the one that was curly and perfect vs. the straight ones. And then, the fuzzy piece of shit she knew I wouldn't like.
It was a car dealership. They just sold wigs instead.
So I called another shop, explained the situation and my reimbursement amount. They said this was absolutely doable. I went there with my mom, and, after trying on about a hundred wigs, we found a synthetic one that looks like me. The price? About $150. I will be able to get the supplies I need, and the wig, with nothing out of pocket. It will be here next week. Thank you, Merle Norman, you treated me with kindness and respect.
I still haven't heard back from the first place. Obviously, I wasn't the big dollar client she wanted. Every time I see their commercial now, it makes me mad. How can a business do that to people who are sick? I couldn't do it.
So, that was my wig shopping nightmare that ended up working out in the end. I will have hair when I need it. That's reassuring to me.
Ok, I have to lay down. I have the pump on for another day. Fluids for tomorrow and Saturday. Ron has been cleared to "unplug" my port when it's all done, instead of waiting for a nurse to show up. Then, it's time to build back up, and kick some more ass.
My oncologist is thrilled with my progress. I asked him when I can consider myself to be in remission. He said that is an outdated term, and he uses "No Evidence of Disease", or NED.
I am there now. WOOT!!!
My blood work was good yesterday..."beautiful" in the cancer world. My hemoglobin dropped slightly, but nothing to be concerned about.
The genetic testing for Lynch Syndrome was done on my tumor, and it has been ruled out. YES!!!
We are still moving forward with having the full genetic workup done to determine if there are any other hereditary predispositions for more cancer. I feel this is the best way to be proactive moving forward. I meet with the genetics counselor next Weds.
I went wig shopping earlier this week. I'm not bald yet, but the way things are going, I may be soon. I had a consultation at a well-known hair replacement salon (I am not going to mention the name). After a quick chat about my situation, she asked what I was thinking about price. I said it was being paid by insurance, but I didn't know how much. I asked what the typical insurance company reimbursed.
"Wellll, some plans do 70%, others 90%...it all depends on the plan."
I am fortunate to have a decent insurance plan, so I guessed we were probably in the 80-90% slot. She did a lot of coaching on what to say to the insurance company when inquiring about what they pay. It started to feel...weird.
So we talk about real hair vs. synthetic. Synthetic is easier to care for, real looks better. Synthetic is cheaper, real is more expensive. Makes sense. I tell her synthetic may be my best bet, since I don't want to fuss with maintenance.
She went and grabbed samples for me to try on. One was...wavy...the other two were stick straight, all real hair. Straight is not my thing. I want to look like me. I told her this, and she brings me straight. WTF?
Asking her about the slim pickings, she says that they don't have a lot of curly wigs in stock. If I wanted, they can always perm a real haired wig. They really know what they are doing, and it will look great.
Perm. My immediate thought was of the nightmare of perming my hair as a kid (I didn't condition my hair back then, so didn't know it was curly to begin with), and of how awful and fake the curls looked.
So I grab the wavy one and tried it on. It was exactly my color, and looks exactly like my hair did when it was short. I loved it. LOVED it.
Until I looked at the price tag. $3600.
Am I at a car dealership? Where am I?
"What about synthetic?" I ask.
"Hmmm...we really don't have anything in synthetic that's curly. Let me go look again."
She returns with a DARK red-brown (I am light brown), fuzzy, Halloween grade, piece of shit that had a total of ten curls in it. No other hair, just ten fuzzy curls. I try it on, knowing I will hate it. Yep. Hate it. Can't stand even looking at myself in it. Not. Gonna. Work.
Ok, so if my insurance covered 90%, the one I love would cost me $360. Spendy, but doable. I leave, telling her we would be in contact after I talked with the insurance company. She gave me her card, and had a huge smile on her face when I left. A smile that said *commission!!!!*.
So I call the insurance company. Followed the coaching, step by step. I am transferred to another entity, who covers this type of thing. I restated the coached phrase, "I have a doctor's prescription for a full cranial hair prosthetic for drug induced alopecia".
"Ok, Ms. Allard, for a chemo wig our reimbursement is $250 for the wig and supplies."
I was devastated.
I called the consultant and told her what I will be reimbursed for and that the $3600 wig was out of the picture. With their small inventory of curly wigs, I just didn't think this was a good fit. Her reply was, "Well, we could do a lower priced real hair and perm it?" Nope. Not gonna buy something, have you fry it and hate it. She restated that they were experts in this field, and the really know what they are doing. She ended with, "I'll have to do some homework. Let me call you back."
After sobbing for a couple of hours, wanting my real hair back (NEVER did I think I would be saying that!), my intellectual side returned. That entire visit was choreographed to make me fall in love with that wig. From the "We don't have anything curly," to the one that was curly and perfect vs. the straight ones. And then, the fuzzy piece of shit she knew I wouldn't like.
It was a car dealership. They just sold wigs instead.
So I called another shop, explained the situation and my reimbursement amount. They said this was absolutely doable. I went there with my mom, and, after trying on about a hundred wigs, we found a synthetic one that looks like me. The price? About $150. I will be able to get the supplies I need, and the wig, with nothing out of pocket. It will be here next week. Thank you, Merle Norman, you treated me with kindness and respect.
I still haven't heard back from the first place. Obviously, I wasn't the big dollar client she wanted. Every time I see their commercial now, it makes me mad. How can a business do that to people who are sick? I couldn't do it.
So, that was my wig shopping nightmare that ended up working out in the end. I will have hair when I need it. That's reassuring to me.
Ok, I have to lay down. I have the pump on for another day. Fluids for tomorrow and Saturday. Ron has been cleared to "unplug" my port when it's all done, instead of waiting for a nurse to show up. Then, it's time to build back up, and kick some more ass.
Wednesday, September 5, 2012
Revelations
I am hours away for round four. I am dreading it. A lot.
Being I will be a shaking, sweaty mess when I get home, I wanted to write this before I got distracted by a marshmallow of a bed calling to me.
Things happen in life for a reason. Sometimes we don't know why, until we view them from afar.
A few things have happened to me in the last couple of days; things clicking into place like they were designed to fit there.
In time, I will be able to step back and take a look at the whole picture and make sense of it.
For now, I need to trust the artist to know what is best for me.
Monday, September 3, 2012
Happy Labor Day
Warning: Roller coaster ride ahead...fasten your seatbelts, and keep your hands inside the car at all times.
Happy Labor Day to all...I hope everyone has found something fun and memorable to do for the long weekend.
First of all, the good news...My CT scan came back with no "remarkable" findings. The one lymph node that was of concern last time has subsided, nothing else raising concern. Another CEA was done...2.1! Woot! I can't tell you how good it feels to see progress...it makes all this crap worth it.
Round three was definitely a weird one. It didn't seem to knock me on my butt as bad as the last two, but the other side effects were worse. My hair...ugh. When I condition my hair in the shower, I run my fingers through my hair to catch all the hair that's loose. I then look at the mess in my hands, try not to cry, and ball it up by rubbing my hands together. The hairball I throw away each day is getting bigger, and I don't see how I will have any hair left in a week. I am coming to the realization that I will most likely be shaving my head soon, and it sucks. BUT, it will be the day that this depressing event in the shower ends. I'm just not ready to do it yet.
My best friend texts me, "The cancer will be gone, your hair will come back." So true, and so needed to be heard. Thank you, Stace. I love you, girl.
Being back to work part-time is working out really well. I have been able to telecommute most of the time and this is working out great. It gives me a taste of normalcy and a sense of purpose again.
Yesterday, The hubby and I went to the riverbank and he did some fishing. I sat and watched, not feeling like dealing with bait and a fishing pole. It was a half-hearted effort to catch a catfish. I think, for both of us, it was more of an effort to escape from the "black cloud". It worked.
The water smelled so good. There was a bit of "people traffic" where we were...couples would come with their dogs, throwing sticks for them to fetch from the water. A couple of Russian-speaking men were about 25 yards up the shore from us, catching carp like crazy. All fun to watch.
One the way home, we heard a song - P.M. Dawn's - I'd Die Without You - that reminded me of one of our first trips to Duluth, almost 20 years ago. It was an overnight trip, and the song reminded me of waking up with the morning sun shining through the window. We worked nightshift back then, and morning sun was a rare sight to us. The sun rising over Lake Superior was breathtaking. We watched it drinking warm bottled Frappucino (blech).
The song continued to play, and I was listening to the words:
Oh, I apologize for all the things I've done.
But now I'm underwater and I'm drowning...
Is it my turn to be the one to cry.
Isn't it amazing how some things just completely turn around...
What a way to turn a great, fuzzy-good day into a total sobfest.
In five days, it will be the 20 year anniversary of our first date. It makes me reminisce back to a time when things were simple. A time when a bad hair day was crisis.
Ron is the best thing that ever happened to me. We have been through so much, and continue to love each other more everyday. He is my best friend. He is my rock. He has been so strong and supportive. After the song was over, he squeezed my hand and told me he loved me and realized I was crying (I was trying to hide it). My tears were a mix of overwhelming gratefulness for everything he has done for me, and of sadness that all this shit has happened.
There is nothing I can do to change the fact that I have been diagnosed with cancer, I know this. But, I hate being a "downer". I hate being tired all the time. I hate crying. I hate saying, "I'm probably not going to be in any mood to go out that day...it will be 2 days post-chemo", when asked if I want to go out to celebrate the anniversary of our first date.
I hate cancer. I. fucking. hate. it.
I told him how much I appreciated him, and apologized for not telling him that enough. He kissed my hand and told me he loved me and that I was his world, he wasn't going anywhere. It made things better. It made me turn back around and look forward. Our memories are so sweet and loving, but I can't look at them right now. I need to look forward, and focus on what I can do to kick cancer's ass. The first thing, is to remember I have a wonderful supportive man at my side, and wonderful supportive family and friends at the other. This gives me so much strength. It makes me want to fight and take my life back.
After round four, we are 1/3 the way through this nightmare.
Bring it on.
Happy Labor Day to all...I hope everyone has found something fun and memorable to do for the long weekend.
First of all, the good news...My CT scan came back with no "remarkable" findings. The one lymph node that was of concern last time has subsided, nothing else raising concern. Another CEA was done...2.1! Woot! I can't tell you how good it feels to see progress...it makes all this crap worth it.
Round three was definitely a weird one. It didn't seem to knock me on my butt as bad as the last two, but the other side effects were worse. My hair...ugh. When I condition my hair in the shower, I run my fingers through my hair to catch all the hair that's loose. I then look at the mess in my hands, try not to cry, and ball it up by rubbing my hands together. The hairball I throw away each day is getting bigger, and I don't see how I will have any hair left in a week. I am coming to the realization that I will most likely be shaving my head soon, and it sucks. BUT, it will be the day that this depressing event in the shower ends. I'm just not ready to do it yet.
My best friend texts me, "The cancer will be gone, your hair will come back." So true, and so needed to be heard. Thank you, Stace. I love you, girl.
Being back to work part-time is working out really well. I have been able to telecommute most of the time and this is working out great. It gives me a taste of normalcy and a sense of purpose again.
Yesterday, The hubby and I went to the riverbank and he did some fishing. I sat and watched, not feeling like dealing with bait and a fishing pole. It was a half-hearted effort to catch a catfish. I think, for both of us, it was more of an effort to escape from the "black cloud". It worked.
The water smelled so good. There was a bit of "people traffic" where we were...couples would come with their dogs, throwing sticks for them to fetch from the water. A couple of Russian-speaking men were about 25 yards up the shore from us, catching carp like crazy. All fun to watch.
One the way home, we heard a song - P.M. Dawn's - I'd Die Without You - that reminded me of one of our first trips to Duluth, almost 20 years ago. It was an overnight trip, and the song reminded me of waking up with the morning sun shining through the window. We worked nightshift back then, and morning sun was a rare sight to us. The sun rising over Lake Superior was breathtaking. We watched it drinking warm bottled Frappucino (blech).
The song continued to play, and I was listening to the words:
Oh, I apologize for all the things I've done.
But now I'm underwater and I'm drowning...
Is it my turn to be the one to cry.
Isn't it amazing how some things just completely turn around...
What a way to turn a great, fuzzy-good day into a total sobfest.
In five days, it will be the 20 year anniversary of our first date. It makes me reminisce back to a time when things were simple. A time when a bad hair day was crisis.
Ron is the best thing that ever happened to me. We have been through so much, and continue to love each other more everyday. He is my best friend. He is my rock. He has been so strong and supportive. After the song was over, he squeezed my hand and told me he loved me and realized I was crying (I was trying to hide it). My tears were a mix of overwhelming gratefulness for everything he has done for me, and of sadness that all this shit has happened.
There is nothing I can do to change the fact that I have been diagnosed with cancer, I know this. But, I hate being a "downer". I hate being tired all the time. I hate crying. I hate saying, "I'm probably not going to be in any mood to go out that day...it will be 2 days post-chemo", when asked if I want to go out to celebrate the anniversary of our first date.
I hate cancer. I. fucking. hate. it.
I told him how much I appreciated him, and apologized for not telling him that enough. He kissed my hand and told me he loved me and that I was his world, he wasn't going anywhere. It made things better. It made me turn back around and look forward. Our memories are so sweet and loving, but I can't look at them right now. I need to look forward, and focus on what I can do to kick cancer's ass. The first thing, is to remember I have a wonderful supportive man at my side, and wonderful supportive family and friends at the other. This gives me so much strength. It makes me want to fight and take my life back.
After round four, we are 1/3 the way through this nightmare.
Bring it on.
Friday, August 24, 2012
Good News
Round 3 is in progress. I am wearing a pump until about 3pm today, then I start the IV hydration for 4 hours today and 4 hours tomorrow. It seems less harsh on me this time...granted, I am forcing myself to drink more water than I want to. I don't seem as tired this time. Yes, I am still sleeping more than normal, but I am finding myself awake more this time.
So, the good news (with a bit of background)...
They did a CEA test on Weds, a test that detects cancer in the body. Normal levels for a person without cancer are 0-2.5. Smoking can raise this level. When I was diagnosed, it was 3.0. When I started chemo, it was 2.8. Today, it's 2.2! Normal range! Woot!
Finally I have some information that says we are doing things right. So comforting to me. It makes all this crap worth it.
The oncologist was doing cartwheels when he found out I quit smoking. This was the first time I had seen him since mid-July...I see his PA most of the time. All of my blood work looked good. My hemoglobin is slowly recovering from the tumor bleeding prior to surgery...it's almost normal! He is very pleased with what is going on with me, said I was doing stellar.
The next item on the cancer agenda is genetic testing for Lynch Syndrome. Lynch Syndrome is a genetic defect that raises the probability of colon/rectal/bladder/uterine cancers. Being I was diagnosed at 40 with colon cancer that had been there for 1-3 years, it raises a red flag. My dad having had prostate cancer raises another one. I had a hard time making the decision to be tested for it, because I didn't know how I would take more bad news (if it's positive). I have decided I need to do it, so we can be proactive about things moving forward. I want to do everything I can to NOT have to go through this again.
I have a CT scan of my abdomen schedule for Weds. I will be having them done every 2 months during chemo to monitor for abnormalities. My last one showed a slightly swollen lymph node at the surgery site. It was 5mm. When I read the report, I read 5cm, and freaked for a moment (this was the size of the largest one they removed). I reread, and saw millimeters. Not a big deal. They will watch it...hopefully it doesn't get bigger. We will find out on Weds!
And, finally, I will be returning to work part-time on Monday. I am a bit nervous, but looking forward to the taste of "normalcy". It will be good to have purpose again.
Happy Friday!
So, the good news (with a bit of background)...
They did a CEA test on Weds, a test that detects cancer in the body. Normal levels for a person without cancer are 0-2.5. Smoking can raise this level. When I was diagnosed, it was 3.0. When I started chemo, it was 2.8. Today, it's 2.2! Normal range! Woot!
Finally I have some information that says we are doing things right. So comforting to me. It makes all this crap worth it.
The oncologist was doing cartwheels when he found out I quit smoking. This was the first time I had seen him since mid-July...I see his PA most of the time. All of my blood work looked good. My hemoglobin is slowly recovering from the tumor bleeding prior to surgery...it's almost normal! He is very pleased with what is going on with me, said I was doing stellar.
The next item on the cancer agenda is genetic testing for Lynch Syndrome. Lynch Syndrome is a genetic defect that raises the probability of colon/rectal/bladder/uterine cancers. Being I was diagnosed at 40 with colon cancer that had been there for 1-3 years, it raises a red flag. My dad having had prostate cancer raises another one. I had a hard time making the decision to be tested for it, because I didn't know how I would take more bad news (if it's positive). I have decided I need to do it, so we can be proactive about things moving forward. I want to do everything I can to NOT have to go through this again.
I have a CT scan of my abdomen schedule for Weds. I will be having them done every 2 months during chemo to monitor for abnormalities. My last one showed a slightly swollen lymph node at the surgery site. It was 5mm. When I read the report, I read 5cm, and freaked for a moment (this was the size of the largest one they removed). I reread, and saw millimeters. Not a big deal. They will watch it...hopefully it doesn't get bigger. We will find out on Weds!
And, finally, I will be returning to work part-time on Monday. I am a bit nervous, but looking forward to the taste of "normalcy". It will be good to have purpose again.
Happy Friday!
Monday, August 20, 2012
A Taste of Fall
Wow, what a nice taste of Fall last week. All I could think of was apples. I can't wait for apples.
The Minnesota State Fair starts this week, which always marks the beginning of the end of Summer. And, what a Summer it has been. Hot. Humid. Cancer. Surgery. Chemo.
Yeah, I'm ready for Fall.
Fall is my favorite time of year. I love the colors and the crisp air. Hopefully, we get a beautiful Fall like we had last year, where the colors lasted longer than I can remember.
Round two of chemo seemed to go better than round one. I had IV hydration for two days post treatment, and I think that put me a day ahead, recovery-wise. The hydration is done in our home, so we had to learn how to disconnect and reconnect my port access to the IV. It is quite odd to have an IV pole in the house. Ron is already trying to figure out how we can use it post-chemo. Lubing clutch cables on the bikes is his latest idea.
I lost a TON of hair this time. I don't think my scalp is going to be able to keep up. It started looking stringy, so I had about 6" cut off. It's hard getting used to short hair, but it's easier to deal with it falling out when it's short. Thank you, Emily, for being so kind and gentle while cutting it for me...it was a hard thing to do.
Round three is in two days. I am trying my best to eat well and hydrate.
Building it up to knock it all down again.
Hopefully, I have hair left.
Priorities, right?
The Minnesota State Fair starts this week, which always marks the beginning of the end of Summer. And, what a Summer it has been. Hot. Humid. Cancer. Surgery. Chemo.
Yeah, I'm ready for Fall.
Fall is my favorite time of year. I love the colors and the crisp air. Hopefully, we get a beautiful Fall like we had last year, where the colors lasted longer than I can remember.
Round two of chemo seemed to go better than round one. I had IV hydration for two days post treatment, and I think that put me a day ahead, recovery-wise. The hydration is done in our home, so we had to learn how to disconnect and reconnect my port access to the IV. It is quite odd to have an IV pole in the house. Ron is already trying to figure out how we can use it post-chemo. Lubing clutch cables on the bikes is his latest idea.
I lost a TON of hair this time. I don't think my scalp is going to be able to keep up. It started looking stringy, so I had about 6" cut off. It's hard getting used to short hair, but it's easier to deal with it falling out when it's short. Thank you, Emily, for being so kind and gentle while cutting it for me...it was a hard thing to do.
Round three is in two days. I am trying my best to eat well and hydrate.
Building it up to knock it all down again.
Hopefully, I have hair left.
Priorities, right?
Thursday, August 9, 2012
Round 2 Today
I have started this post about fourteen times, and just can't get myself to finish it. The reason? I really don't know. I guess it's because I don't have anything funny or good to say.
It's been a tough stretch. After the pump was disconnected, I had a battle with nausea. My mouth was very sensitive to cold, so I could only drink room temperature liquids. My hair started to thin out. Now I am left with extreme fatigue. I just can't seem to get enough sleep.
Chemo sucks. There's no way around the "sucks" part.
I keep thinking of a time, years ago, when my first car would break down. I found myself, sitting in the driver's seat, watching all the working cars go zipping by. I envied everyone who had a working car, hated my car because it let me down, and wanted the broken thing fixed NOW.
Then it was a car. Now, it's my body.
Now, it goes like this: Ienvied envy everyone who had has a working car body, hated my car body because it let me down, and wanted the broken thing cancer fixed GONE NOW.
Yep, I'm on the pity pot.
Today is round 2 of 12. I am hoping they will be able to tweak some things to lessen my side effects. I already know they are going to give me a much stronger anti-nausea med in my IV. It's possible that they will be slowing the administration of the first med from two hours to four. I've read that this is extremely effective in eliminating a lot of the stranger side effects (mouth sensitivity, etc.). My case manager is also encouraging me to request IV hydration after the treatment. Staying adequately hydrated is extremely important, and was quite the battle after the pump came off. Not sure if the fluids would be administered after the infusion today, or after the pump comes off on Saturday. We will see.
I have received a lot of nice cards and phone calls in the last couple of weeks. Thank you to all of you who are in the bleachers, cheering me on. This last stretch has caused me to doubt myself many, many times. It's just the beginning of the marathon. I hope it's just a matter of "hitting the wall" and pushing past it. You guys keep me fighting.
It's been a tough stretch. After the pump was disconnected, I had a battle with nausea. My mouth was very sensitive to cold, so I could only drink room temperature liquids. My hair started to thin out. Now I am left with extreme fatigue. I just can't seem to get enough sleep.
Chemo sucks. There's no way around the "sucks" part.
I keep thinking of a time, years ago, when my first car would break down. I found myself, sitting in the driver's seat, watching all the working cars go zipping by. I envied everyone who had a working car, hated my car because it let me down, and wanted the broken thing fixed NOW.
Then it was a car. Now, it's my body.
Now, it goes like this: I
Yep, I'm on the pity pot.
Today is round 2 of 12. I am hoping they will be able to tweak some things to lessen my side effects. I already know they are going to give me a much stronger anti-nausea med in my IV. It's possible that they will be slowing the administration of the first med from two hours to four. I've read that this is extremely effective in eliminating a lot of the stranger side effects (mouth sensitivity, etc.). My case manager is also encouraging me to request IV hydration after the treatment. Staying adequately hydrated is extremely important, and was quite the battle after the pump came off. Not sure if the fluids would be administered after the infusion today, or after the pump comes off on Saturday. We will see.
I have received a lot of nice cards and phone calls in the last couple of weeks. Thank you to all of you who are in the bleachers, cheering me on. This last stretch has caused me to doubt myself many, many times. It's just the beginning of the marathon. I hope it's just a matter of "hitting the wall" and pushing past it. You guys keep me fighting.
Thursday, July 26, 2012
1st Treatment
One down, eleven to go.
Being this was my first treatment, there was a lot to be taken in. There is a lot of "routine" that needs to be learned. The cancer clinic is a very well oiled machine...I am learning how it ticks.
Job one was to get blood for panels. Every time I get treatment, they will be doing panels to verify it is safe to give me chemo. Definitely a much easier task (for all involved) with the port!
I met with the PA to discuss what to watch for during infusion. She was pleased with my blood "numbers", and deemed me healthy enough for the infusion.
I went back to the waiting room and given a "restaurant beeper". You know, the kind that vibrates and beeps when your table is ready? About 10 minutes later, it was going off. I went back up to the check in desk, and they sent me up to 3rd floor..."The Infusion Suite".
I had heard this term before, and developed a picture in my head of what it might look like. Total miss...nothing what I had expected.
It was similar to an ICU in activity. There were many, many people receiving infusions...young and old. The floor was divided up into "pods", the pods were divided up into "suites" via the use of curtains. I didn't figure out how many suites there were to a pod...but I know there were a lot of them. The pods were labeled "A,B,C...", and I saw them up to L down the hall.
Wow.
I was in Pod C. I was given the choice of a chair or a bed. I preferred a chair...a bed would have made me felt like I was taking up space a person sicker than me could use. It was a hospital recliner...very comfy.
I was given the quick tour...location of the snack area, restroom, magazines, blanket warmer. Then, my infusion started. I was given an estimate of 2 1/2 hrs for everything to be done, and we could go home. This was good news...I was expecting four.
I had brought a ton of magazines for both of us. Ron really didn't want his at first. I think he needed to absorb the place for a bit. From all of the talk of what could happen during the infusion, I think he was a bit freaked out. I was too. I knew he was freaked out because he got himself 2 granola bars from the snack area. He doesn't eat "sawdust bars".
After about fifteen minutes, I wasn't feeling any different. I had a cold pop on my table to test if my hands had become sensitive to cold (one of the most common side effects). Then I would take a sip. My mouth wasn't sensitive either...yet.
Six magazines and four chapters of Tami Hoag later, and my infusion stand started beeping. The nurse came and told me, "You took that like a champ!"
Did I have a choice?
She hooked me up to the pump that will infuse the second drug over a 48 hr period. It's not a cool, mechanical pump. It's a bottle with a balloon inside of it. No bells, no whistles. Less to go wrong, right?
Sure, but let's talk about how cumbersome it is to have a half-liter bottle, with 14 times too much tubing attached, hanging at your waist for 48 hours. It's been less than 24, and I am not liking it. Granted, it's better than sitting in the infusion suite for 48 hrs, but come on people! Let's design these things a bit more wearer friendly!
So, we start the hectic commute home from the U of M at the start of rush hour. It was an adventure, to say the least. I hadn't figured out what to do with the excess tubing, yet, so it was a job to make sure none of it got kinked. The seat belt was VERY uncomfortable on my port, so I had to hold it away. By the time we got out of the cities, just dealing with suburban traffic, I was feeling the start of steroid rage. Oh boy.
Waiting for for the green arrow in the left turn lane of an intersection, we have approximately 7 cars in front of us. Mr. "white car" in front of us has been a putz up to this light, and I am betting Ron $10 he is going to make us miss the light. I also had my left hand on the door handle, ready to discuss this with him when we catch him post-offence, and the D-cell Maglight flashlight in my right hand. Yeah...
We made the light. Total disappointment.
We arrived home a little after 4pm. I grabbed a cold water and sat down to read all of the material I received with the pump. I took a sip of the water...yeah buddy! My mouth feels like I ate crystallized ice cream waaaay to fast, minus the brain freeze - thank God. My taste has also changed. Water has a tendency to taste - get this - creamy. Ugh.
I felt a bit of nausea about 2 hours after we got home, but meds have done a good job controlling it. I was quite exhausted from 6pm on, but the steroids and uncomfortable pump kept me from getting any sleep until around 11pm.
I awoke with no appetite, and my mouth is still sensitive to cold. I am told that it could even get sensitive to walking into an air conditioned building. None of that yet. I am told that dehydration adds to chemo side affects, so I will need to find liquids that I can tolerate at room temp. Diet Coke is going down ok, but not really acceptable is a hydrating liquid. I'll find something.
The roid rage is gone. I think.
The home nurse comes to remove the pump at 1pm tomorrow. I am told that once the pump is removed, I will probably sleep for 2 days.
Eleven more treatments to go. I'm not sure how the side effects I am experiencing are going pan out...are they here until treatment 12, or do they go away a couple days post-infusion? The professionals say it can go both ways, and each treatment tends to intensify whatever is there.
Again, time will tell.
Time for a nap.
Being this was my first treatment, there was a lot to be taken in. There is a lot of "routine" that needs to be learned. The cancer clinic is a very well oiled machine...I am learning how it ticks.
Job one was to get blood for panels. Every time I get treatment, they will be doing panels to verify it is safe to give me chemo. Definitely a much easier task (for all involved) with the port!
I met with the PA to discuss what to watch for during infusion. She was pleased with my blood "numbers", and deemed me healthy enough for the infusion.
I went back to the waiting room and given a "restaurant beeper". You know, the kind that vibrates and beeps when your table is ready? About 10 minutes later, it was going off. I went back up to the check in desk, and they sent me up to 3rd floor..."The Infusion Suite".
I had heard this term before, and developed a picture in my head of what it might look like. Total miss...nothing what I had expected.
It was similar to an ICU in activity. There were many, many people receiving infusions...young and old. The floor was divided up into "pods", the pods were divided up into "suites" via the use of curtains. I didn't figure out how many suites there were to a pod...but I know there were a lot of them. The pods were labeled "A,B,C...", and I saw them up to L down the hall.
Wow.
I was in Pod C. I was given the choice of a chair or a bed. I preferred a chair...a bed would have made me felt like I was taking up space a person sicker than me could use. It was a hospital recliner...very comfy.
I was given the quick tour...location of the snack area, restroom, magazines, blanket warmer. Then, my infusion started. I was given an estimate of 2 1/2 hrs for everything to be done, and we could go home. This was good news...I was expecting four.
I had brought a ton of magazines for both of us. Ron really didn't want his at first. I think he needed to absorb the place for a bit. From all of the talk of what could happen during the infusion, I think he was a bit freaked out. I was too. I knew he was freaked out because he got himself 2 granola bars from the snack area. He doesn't eat "sawdust bars".
After about fifteen minutes, I wasn't feeling any different. I had a cold pop on my table to test if my hands had become sensitive to cold (one of the most common side effects). Then I would take a sip. My mouth wasn't sensitive either...yet.
Six magazines and four chapters of Tami Hoag later, and my infusion stand started beeping. The nurse came and told me, "You took that like a champ!"
Did I have a choice?
She hooked me up to the pump that will infuse the second drug over a 48 hr period. It's not a cool, mechanical pump. It's a bottle with a balloon inside of it. No bells, no whistles. Less to go wrong, right?
Sure, but let's talk about how cumbersome it is to have a half-liter bottle, with 14 times too much tubing attached, hanging at your waist for 48 hours. It's been less than 24, and I am not liking it. Granted, it's better than sitting in the infusion suite for 48 hrs, but come on people! Let's design these things a bit more wearer friendly!
So, we start the hectic commute home from the U of M at the start of rush hour. It was an adventure, to say the least. I hadn't figured out what to do with the excess tubing, yet, so it was a job to make sure none of it got kinked. The seat belt was VERY uncomfortable on my port, so I had to hold it away. By the time we got out of the cities, just dealing with suburban traffic, I was feeling the start of steroid rage. Oh boy.
Waiting for for the green arrow in the left turn lane of an intersection, we have approximately 7 cars in front of us. Mr. "white car" in front of us has been a putz up to this light, and I am betting Ron $10 he is going to make us miss the light. I also had my left hand on the door handle, ready to discuss this with him when we catch him post-offence, and the D-cell Maglight flashlight in my right hand. Yeah...
We made the light. Total disappointment.
We arrived home a little after 4pm. I grabbed a cold water and sat down to read all of the material I received with the pump. I took a sip of the water...yeah buddy! My mouth feels like I ate crystallized ice cream waaaay to fast, minus the brain freeze - thank God. My taste has also changed. Water has a tendency to taste - get this - creamy. Ugh.
I felt a bit of nausea about 2 hours after we got home, but meds have done a good job controlling it. I was quite exhausted from 6pm on, but the steroids and uncomfortable pump kept me from getting any sleep until around 11pm.
I awoke with no appetite, and my mouth is still sensitive to cold. I am told that it could even get sensitive to walking into an air conditioned building. None of that yet. I am told that dehydration adds to chemo side affects, so I will need to find liquids that I can tolerate at room temp. Diet Coke is going down ok, but not really acceptable is a hydrating liquid. I'll find something.
The roid rage is gone. I think.
The home nurse comes to remove the pump at 1pm tomorrow. I am told that once the pump is removed, I will probably sleep for 2 days.
Eleven more treatments to go. I'm not sure how the side effects I am experiencing are going pan out...are they here until treatment 12, or do they go away a couple days post-infusion? The professionals say it can go both ways, and each treatment tends to intensify whatever is there.
Again, time will tell.
Time for a nap.
Monday, July 23, 2012
Port's In
This morning I had the port placed.
We were to be at the hospital at 9:30, I was brought back almost immediately. Normally, they would have allowed Ron to come back with me (since there is always a waiting period before you are actually brought back for the procedure). This nurse didn't offer the opportunity for Ron to come back, and I didn't think to insist. He needed to pick up an Rx at the discharge pharmacy, so I figured he could go do that instead.
Walking down that hall without him next to me was absolute torture. It made me realize how much I rely on him for strength. By the time I was in my room, the tears were silently flowing...I couldn't stop them for anything.
The crying wasn't from fear of the procedure. It was the act of the port being placed making this whole nightmare real in my head. There's no more denying it. No more fronts. I have cancer.
The nurses were very comforting. One nurse told me of her daughter being diagnosed a year ago, at the age of 21, with lymphoma. She had been through chemo and radiation, and was now doing very well.
Twenty-one.
The biggest thing on a 21-year-old's plate is supposed to be
college/boyfriend/job. NOT cancer.
I seemed to calm down a bit, and they inserted an IV in my arm (last one!). Antibiotics first, then sedative.
Ron was brought back shortly after. I still hadn't managed to stop the tears. It had been an hour and a half.
He listened and comforted and told me it was going to be ok. I could hear those words from anyone else, and it wouldn't mean shit. Coming from his mouth, it means everything. He is my rock. He gave me the strength to stop the tears and focus on what needed to get done.
They wheeled me back just after 11. The nurses in the OR were great. They made a nice little tent over my face so I couldn't see what they were doing (yet I was able to see the nurse if I needed anything). I was given a sedative/pain killer combo that allowed me to be awake but comfortable.
The procedure was supposed to take an hour, but it took two (not sure why). At the end of the procedure, I was left with two incisions: one about 3" below my collarbone where the port was put under the skin, and one on the base of my neck where they accessed my vein.
This is what is under my skin. For those who know me well, please note the color :-)! As of right now, it has produced a bump under my skin about 1/4" high, and maybe one inch in diameter. To use the port, I apply a numbing cream to my skin, and a needle is stuck through my skin and into the center of the port (which is a silicone type substance). One poke, and they can do blood draws, CT contrast, chemo. Very convenient, less risk for infection, no collapsed veins. I will NOT miss IV's.
We were to be at the hospital at 9:30, I was brought back almost immediately. Normally, they would have allowed Ron to come back with me (since there is always a waiting period before you are actually brought back for the procedure). This nurse didn't offer the opportunity for Ron to come back, and I didn't think to insist. He needed to pick up an Rx at the discharge pharmacy, so I figured he could go do that instead.
Walking down that hall without him next to me was absolute torture. It made me realize how much I rely on him for strength. By the time I was in my room, the tears were silently flowing...I couldn't stop them for anything.
The crying wasn't from fear of the procedure. It was the act of the port being placed making this whole nightmare real in my head. There's no more denying it. No more fronts. I have cancer.
The nurses were very comforting. One nurse told me of her daughter being diagnosed a year ago, at the age of 21, with lymphoma. She had been through chemo and radiation, and was now doing very well.
Twenty-one.
The biggest thing on a 21-year-old's plate is supposed to be
college/boyfriend/job. NOT cancer.
I seemed to calm down a bit, and they inserted an IV in my arm (last one!). Antibiotics first, then sedative.
Ron was brought back shortly after. I still hadn't managed to stop the tears. It had been an hour and a half.
He listened and comforted and told me it was going to be ok. I could hear those words from anyone else, and it wouldn't mean shit. Coming from his mouth, it means everything. He is my rock. He gave me the strength to stop the tears and focus on what needed to get done.
They wheeled me back just after 11. The nurses in the OR were great. They made a nice little tent over my face so I couldn't see what they were doing (yet I was able to see the nurse if I needed anything). I was given a sedative/pain killer combo that allowed me to be awake but comfortable.
The procedure was supposed to take an hour, but it took two (not sure why). At the end of the procedure, I was left with two incisions: one about 3" below my collarbone where the port was put under the skin, and one on the base of my neck where they accessed my vein.
 |
It was emotional, but worth it. It will allow a safer delivery of the meds that will make me better.
Hi, my name is Ronda, and I have cancer.
Wanna see my port?
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