How is it said? Be careful what you wish for?
I have been hoping to find a way to communicate and educate on the subject of colorectal cancer. Along with CaringBridge, I have been writing on my own blogspot as well as Blog For a Cure. My hope was the more I wrote, the more the subject would be "Googled" and my journey would be read and the message spread. This is not just a disease of the old!!!
It worked! The Montel Williams show contacted me today. A producer from the show ran across my story and found it inspiring. After a bit of discussion, I was invited to share my story. What a gift! Dick and Eileen will be joining me and featured on the show as well. We head to New York next week for taping Tuesday, Wednesday and Thursday. The show is focusing on leaving a legacy. Amazing, as that very subject has been weighing heavy and working on my emotions at a higher level as of late
I am fully aware that I am no different than any other cancer survivor fighting their own battle. I will not question why my blog caught the attention of the show. I do know I will do my best to represent all of us surviving and living with this daily.
Wish us luck! I'm looking forward to updating all of you upon our return.
Friday, November 30, 2007
Tuesday, November 27, 2007
This past week has been very difficult for me both physically and emotionally.
On a high note, I have completed my third cycle of treatment. Thankfully, my most recent blood results showed that I am still strong and have the ability to continue with my current regimen. Although I dislike daily Neupogen injections, as they cause deep bone pain, I am very fortunate to have it available to me. Without it, I would not have been able to continue treatment. Right now I will be enjoying a two week break and energizing myself for the next cycle.
Starting last week, the beginning of the "Holiday Season", my emotions ran amuck. Will I be here next year to enjoy another Thanksgiving? Christmas? I'm not living with statistics or odds, but, I have to admit, it is difficult to ignore them at times. Then, as I travel through this journey, I have such a great appreciation for the meaning of the Season. I have taken the time to reflect and appreciate memories from the past and look forward to creating future memories.
As I was going through my funk, I evidently picked up a passing virus. As hard as I tried, I could not recover from last weeks treatment. I felt like I had been hit by a Mack truck. My body felt like it was slowly breaking down. I was very close to asking Dick to take me to the hospital on Saturday. Sunday night I was mentally preparing myself for Monday's infusion and my body was telling me no. When I arrived at Mayo, I thought for sure I was going to be sent away. I was surprised and thankful it was a go.
It's a new week. Today was a great day. I was up early and worked around the house. By mid-morning I was out for the first of my next series of injections, ran a few errands, enjoyed acupuncture and "Target Tuesday" with Eileen. I arrived home at 6:30 p.m. feeling pretty darn good.
The funk of last week has passed. I just keep learning. Don't give up....never give up.
On a high note, I have completed my third cycle of treatment. Thankfully, my most recent blood results showed that I am still strong and have the ability to continue with my current regimen. Although I dislike daily Neupogen injections, as they cause deep bone pain, I am very fortunate to have it available to me. Without it, I would not have been able to continue treatment. Right now I will be enjoying a two week break and energizing myself for the next cycle.
Starting last week, the beginning of the "Holiday Season", my emotions ran amuck. Will I be here next year to enjoy another Thanksgiving? Christmas? I'm not living with statistics or odds, but, I have to admit, it is difficult to ignore them at times. Then, as I travel through this journey, I have such a great appreciation for the meaning of the Season. I have taken the time to reflect and appreciate memories from the past and look forward to creating future memories.
As I was going through my funk, I evidently picked up a passing virus. As hard as I tried, I could not recover from last weeks treatment. I felt like I had been hit by a Mack truck. My body felt like it was slowly breaking down. I was very close to asking Dick to take me to the hospital on Saturday. Sunday night I was mentally preparing myself for Monday's infusion and my body was telling me no. When I arrived at Mayo, I thought for sure I was going to be sent away. I was surprised and thankful it was a go.
It's a new week. Today was a great day. I was up early and worked around the house. By mid-morning I was out for the first of my next series of injections, ran a few errands, enjoyed acupuncture and "Target Tuesday" with Eileen. I arrived home at 6:30 p.m. feeling pretty darn good.
The funk of last week has passed. I just keep learning. Don't give up....never give up.
Tuesday, November 13, 2007
I received a lovely note from my dear friend Ann yesterday. She was responding to my most recent post and had her own sweet words of wisdom to share with me.
Her note touched me so much that I asked if I could share it with all of you. We all experience life challenges. I hope you find Ann's words as beautiful and encouraging as I found them.
"I once wrote a long, drawn out explanation of the darkness and the light...if for nothing other than to create some kind of "reason" for the ups and downs that were causing me distress...and it went something like this:
In beginning drawing class one of the first things they teach you is that shadow is just as important as light. A composition is stronger visually and is far more appealing with the substance shadow lends. That being said, the co-existence of light along side the darkness is equally vital to creating a successful work of art...it's all about balance. Staying somewhere in between is most likely comfortable for most of us...but you're a wonderful, unique masterpiece Kathy, and you have these challenges in front of you because you have the wisdom to understand and the strength to endure.
The hard times must be remembered long enough to appreciate the glorious highs that shine on our shoulders. And when the weight of the world is resting in that very place...you'll feel the warmth of happier times to get you through..."
Her note touched me so much that I asked if I could share it with all of you. We all experience life challenges. I hope you find Ann's words as beautiful and encouraging as I found them.
"I once wrote a long, drawn out explanation of the darkness and the light...if for nothing other than to create some kind of "reason" for the ups and downs that were causing me distress...and it went something like this:
In beginning drawing class one of the first things they teach you is that shadow is just as important as light. A composition is stronger visually and is far more appealing with the substance shadow lends. That being said, the co-existence of light along side the darkness is equally vital to creating a successful work of art...it's all about balance. Staying somewhere in between is most likely comfortable for most of us...but you're a wonderful, unique masterpiece Kathy, and you have these challenges in front of you because you have the wisdom to understand and the strength to endure.
The hard times must be remembered long enough to appreciate the glorious highs that shine on our shoulders. And when the weight of the world is resting in that very place...you'll feel the warmth of happier times to get you through..."
Monday, November 12, 2007
Return From Girls Trip
I'm sitting in my infusion chair at Mayo going between two moods. The highs and lows of my current life are swinging like a pendulum. The balancing act can be difficult and I do all I can to stand firm footed without falling to either side.
The girls trip in the desert was awesome! What could be better than enjoying paradise with four amazingly intelligent and fun loving women? The days consisted of sitting around the pool sipping on champagne, retail therapy, yummy food and then ending each day in the hot tub giggling like teenagers with more adult beverages of choice. Although, if my memory serves me right, menopausal women giggle much more than teenagers. Maybe I should refer to the hot tub experience as giggling like middle-aged women.
I flew into Minneapolis last evening, threw my luggage in the back of my car and proceeded to drive to Rochester. I then booked myself into the hotel and mentally prepared myself for today. Thus.... the pendulum swing.
The plan had been that the current infusion would be the first of the every three week regiment. I was looking forward to having the infusion, knowing I would not be feeling well for a few days this week. That was okay, as I knew I would be coming out of it with extra time to recover and live a "normal" life. I guess the stars are not aligned....that plan has been thrown out the window.
Evidently, my blood counts are still bottomed out. My doctor explained that if I were go to the three week infusion, as outlined previously, I would most likely end up in the hospital come Thanksgiving, fighting for my life and trying to get fevers and infections under control.
The thought had been that with the additional time off these past weeks, my blood would recover and I would be strong and ready to kick this beast with stronger infusions. Not only is my blood not healthy, I am having to accept decreased dosages of chemo and adding Neupogen injections to the mix. (Yes, I said the "N" word!) The doctor is being kind and only requiring four injections.
Needless to say, this has been an emotional morning for me. It's difficult living in paradise one minute and then having to accept the wise words of Dr. Bad News.
Alas....at least I had the opportunity to experience paradise and I still have the memories of California to get me through it. I have Sue and the girls to thank for that. Thank you, ladies!
Oh....and if the above doesn't make sense, I have my infusion of Benedryl to thank for that! Apologies in advance.
The girls trip in the desert was awesome! What could be better than enjoying paradise with four amazingly intelligent and fun loving women? The days consisted of sitting around the pool sipping on champagne, retail therapy, yummy food and then ending each day in the hot tub giggling like teenagers with more adult beverages of choice. Although, if my memory serves me right, menopausal women giggle much more than teenagers. Maybe I should refer to the hot tub experience as giggling like middle-aged women.
I flew into Minneapolis last evening, threw my luggage in the back of my car and proceeded to drive to Rochester. I then booked myself into the hotel and mentally prepared myself for today. Thus.... the pendulum swing.
The plan had been that the current infusion would be the first of the every three week regiment. I was looking forward to having the infusion, knowing I would not be feeling well for a few days this week. That was okay, as I knew I would be coming out of it with extra time to recover and live a "normal" life. I guess the stars are not aligned....that plan has been thrown out the window.
Evidently, my blood counts are still bottomed out. My doctor explained that if I were go to the three week infusion, as outlined previously, I would most likely end up in the hospital come Thanksgiving, fighting for my life and trying to get fevers and infections under control.
The thought had been that with the additional time off these past weeks, my blood would recover and I would be strong and ready to kick this beast with stronger infusions. Not only is my blood not healthy, I am having to accept decreased dosages of chemo and adding Neupogen injections to the mix. (Yes, I said the "N" word!) The doctor is being kind and only requiring four injections.
Needless to say, this has been an emotional morning for me. It's difficult living in paradise one minute and then having to accept the wise words of Dr. Bad News.
Alas....at least I had the opportunity to experience paradise and I still have the memories of California to get me through it. I have Sue and the girls to thank for that. Thank you, ladies!
Oh....and if the above doesn't make sense, I have my infusion of Benedryl to thank for that! Apologies in advance.
Monday, November 5, 2007
I'm busily preparing for a girls trip out to California. I'm running errands, packing and cleaning today. Before leaving, I wanted to write and share with you that I have been using my limited creative ability and working on my own official blog. Simply follow this link and you will find me. http://kathybienapfl.blogspot.com/
The purpose for beginning my own blog is for other cancer survivors. Since I have a rare form of colorectal cancer, it is difficult to find information on the internet. I guess the blog is my way of reaching out to other fighters. This will give them the opportunity to read about my journey. Hopefully this will help in their own decision making and questions of the unknown. From my own experience, I know it's comforting to know that there are others that share my fear.
I plan to continue my CaringBridge entries. Due to the confidential nature of CaringBridge, I have not been able to reach out to other cancer patients and caregivers. Now others can simply Google 'anal cancer blog' and they will eventually find me. A much needed addition to the internet. I've done a lot of internet research since this diagnosis with very little to refer to.
Hope you all have a great week. I doubt I will come back rested. The fun will more than make up for my next chemo treatment which is taking place bright and early next Monday morning....ugh!
Peace and joy to all of you.
The purpose for beginning my own blog is for other cancer survivors. Since I have a rare form of colorectal cancer, it is difficult to find information on the internet. I guess the blog is my way of reaching out to other fighters. This will give them the opportunity to read about my journey. Hopefully this will help in their own decision making and questions of the unknown. From my own experience, I know it's comforting to know that there are others that share my fear.
I plan to continue my CaringBridge entries. Due to the confidential nature of CaringBridge, I have not been able to reach out to other cancer patients and caregivers. Now others can simply Google 'anal cancer blog' and they will eventually find me. A much needed addition to the internet. I've done a lot of internet research since this diagnosis with very little to refer to.
Hope you all have a great week. I doubt I will come back rested. The fun will more than make up for my next chemo treatment which is taking place bright and early next Monday morning....ugh!
Peace and joy to all of you.
Friday, November 2, 2007
TUESDAY, OCTOBER 30, 2007 10:01 AM, CDT
I was able to enjoy seeing a huge smile on Dr. Grothey's face yesterday. It had been a month since we last saw him and three chemo infusions. When I reported that my cough has disappeared and the pain I was feeling is gone, he was quite happy. He stated 'good clinical outcome'. I questioned if it was too soon to really be able to experience tumor shrinkage, his response was absolutely not. He explained that by using the right combination of drugs it is possible to see early response.
My blood counts are quite unhealthy yet. I was not able to receive chemo yesterday. After lengthy discussion, we have decided to start the once every three week schedule with boosters of Neulasta. Although the weekly infusion is easier on my recovery, it is difficult for my body to remake white blood cells in time for the next treatment. Actually, he told me he thinks I will be able to cut my chemo down to once a month. Let's talk about living!!!!!
Dr. Grothey is very human and has a great sense of humor. I mentioned I had a girls trip planned next week. He gave me a pass on treatment. With a look of knowing, he asked for details upon our next meeting. Who would think a world class Mayo doctor would be so interested in the details of my personal life. The gleam in his eye was very telling that he knows me well....lol.
We have been enjoying Jeff's time back home. He returns back to
Pennsylvania on Thursday. I can't believe how quickly time has passed. My anxiety is growing knowing he will soon be leaving. We have enjoyed having him here with us. He has become such a mature young man. It has been a true gift to have him back. Issues that plagued a teenager are long forgotten. Love and appreciation have been felt and spoken.
My spirits are high. I feel that I am going to beat this beast and kick it to the curb. I know that I have been held up by all of you. Your continued prayers and miracle wishes are heard and in motion.
My blood counts are quite unhealthy yet. I was not able to receive chemo yesterday. After lengthy discussion, we have decided to start the once every three week schedule with boosters of Neulasta. Although the weekly infusion is easier on my recovery, it is difficult for my body to remake white blood cells in time for the next treatment. Actually, he told me he thinks I will be able to cut my chemo down to once a month. Let's talk about living!!!!!
Dr. Grothey is very human and has a great sense of humor. I mentioned I had a girls trip planned next week. He gave me a pass on treatment. With a look of knowing, he asked for details upon our next meeting. Who would think a world class Mayo doctor would be so interested in the details of my personal life. The gleam in his eye was very telling that he knows me well....lol.
We have been enjoying Jeff's time back home. He returns back to
Pennsylvania on Thursday. I can't believe how quickly time has passed. My anxiety is growing knowing he will soon be leaving. We have enjoyed having him here with us. He has become such a mature young man. It has been a true gift to have him back. Issues that plagued a teenager are long forgotten. Love and appreciation have been felt and spoken.My spirits are high. I feel that I am going to beat this beast and kick it to the curb. I know that I have been held up by all of you. Your continued prayers and miracle wishes are heard and in motion.
THURSDAY, OCTOBER 25, 2007 08:17 AM, CDT
I missed Oprah on Monday. I was contacted by several people to watch it. Fortunately, Oprah has a link on her website that I found very inspirational.
Following is the link. Click on the Watch Randy's Famous 'Last Lecture' link within Oprah's page.
http://www2.oprah.com/health/oz/oz_20071022_350_106.jhtml?promocode=HP33
Randy Pausch is a true inspiration. I have already experienced 'the' wake up call. Don't wait until you are in my position to follow Randy's advice.
I am living one of my dreams as I type this. Jeff is home and it is wonderful! He has grown to be quite a caring and mature young man. God has blessed me.
Enjoy the video. As my good friend Sue reminds me...Live Like You Are Dying.
I missed Oprah on Monday. I was contacted by several people to watch it. Fortunately, Oprah has a link on her website that I found very inspirational.
Following is the link. Click on the Watch Randy's Famous 'Last Lecture' link within Oprah's page.
http://www2.oprah.com/health/oz/oz_20071022_350_106.jhtml?promocode=HP33
Randy Pausch is a true inspiration. I have already experienced 'the' wake up call. Don't wait until you are in my position to follow Randy's advice.
I am living one of my dreams as I type this. Jeff is home and it is wonderful! He has grown to be quite a caring and mature young man. God has blessed me.
Enjoy the video. As my good friend Sue reminds me...Live Like You Are Dying.
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