I think the post below is poorly written....but I couldn't edit it anymore. I couldn't look at it anymore.:) I hope you can overlook any grammar issues or bad sentences.
Lolo
Sunday, June 22, 2008
Believe in yourself.
Michael got back in town yesterday and it was SO nice to have him here. I forget sometimes how important his strength is for me. He was gone during my last treatment, which should not have been that big of a deal, but it was to me. Anytime, he is not there, I feel it. He is such a great listener, he is always able to ask the right questions when it comes to representing me. I know I am a tenacious patient, but he is a tenacious caregiver.
I never fault him for needing to work or be at Missouri Boy's State because those are important things for him and our family. However, I realized how much I missed him when we went out on a date and I cried for the majority of the dinner. I think the weight of my scans coming up and the burden of continuous treatment has gotten to me. I am not made of steel, though I would like to MAKE all of you think that. The truth is my cancer has gotten in the way of life for us. It has interrupted things, once again.
But, chemo became a necessary evil and it will be necessary for a while longer. It is just part of my healing. It is more than a bummer because I was just beginning to remember that I am an athlete with cycling as my sport. I did not join the riding groups I wanted to be a part of this summer and most recently, I have become sidelined from all sports for a while. Anything but light bike rides or light walks just wouldn't be prudent at this point. Honestly, I should use any strength to do things around the house and be there for my family.
Chemo has not been easy, but it is doable. I have lost a lot of weight, which might seem ideal to some...but the body loses muscle first, fat second. I feel like a mushy, skinny mess. I realize that I might not look as bad as I feel, yet all of these things have affected my confidence. The chemo has caused sores in my mouth, sores on my scalp, itching and pain on my head, fevers, hair loss and fatigue...among other things that I can't think of because of the chemo. It also affects the brain, in terms of things you can remember. This condition is called chemo-brain.
I am venting a little, but I just want to be a little raw in this post and tell what it is really like to be on chemo. I also want all of you to know that regardless of how much I don't feel like myself, the essence of me is still here. The kindness of all of you still shines through to my world. And, I know that I am healing. I know that this chemo, like the other meds I have taken before, has pushed me to the brink of what I think I can do...yet I don't really know my limits. I have always been able to handle any of these things that have come my way. I am still here. I am still alive. I was able to go wal-mart today and I was able to do things with Morgan and go to Jack's t-ball game. My kids have a happy life with their mom in it. Even though the medicines are melting away the perception of who I thought I was, I am grateful for them because I am alive.
I still believe in me. I still have faith that I will be okay. I still visualize myself as a 90-year-old granny teaching my grandkids how to ride a bike...with many books having already been published. As Michael always reminds me, I am already okay right here and now. I don't need anyone to tell me that I am healing. I am okay. I am already exactly who I need to be...in exactly the right moment in time. I may need to take up more yoga as it is a relaxing sport that also helps to strengthen. I also may add a painting class in the mix so that I can paint whatever I want in relation to my healing...and see my painting with my own blue eyes that are still the same
Don't get me wrong, I can't wait to get back on the bike. I can't wait to resume life as normal, but I probably need to learn to relax a little a take advantage of this season of rest. There are always other meds on the horizon and I know I will be on those newer drugs at some point. I also know it will be a new normal. My eyes will be more open to what I can do and my empathy will be unimaginable, I hope! My end goals are always to stabilize my cancer and help others through my whole experience. Helping others allows me to find purpose in my disease, but I do still believe that I will have healing. I hope that each of you believe in your ability to be well!
Thanks to all of you for your positive thoughts and prayers! They mean the world to me!
Blessings,
Lolo
I never fault him for needing to work or be at Missouri Boy's State because those are important things for him and our family. However, I realized how much I missed him when we went out on a date and I cried for the majority of the dinner. I think the weight of my scans coming up and the burden of continuous treatment has gotten to me. I am not made of steel, though I would like to MAKE all of you think that. The truth is my cancer has gotten in the way of life for us. It has interrupted things, once again.
But, chemo became a necessary evil and it will be necessary for a while longer. It is just part of my healing. It is more than a bummer because I was just beginning to remember that I am an athlete with cycling as my sport. I did not join the riding groups I wanted to be a part of this summer and most recently, I have become sidelined from all sports for a while. Anything but light bike rides or light walks just wouldn't be prudent at this point. Honestly, I should use any strength to do things around the house and be there for my family.
Chemo has not been easy, but it is doable. I have lost a lot of weight, which might seem ideal to some...but the body loses muscle first, fat second. I feel like a mushy, skinny mess. I realize that I might not look as bad as I feel, yet all of these things have affected my confidence. The chemo has caused sores in my mouth, sores on my scalp, itching and pain on my head, fevers, hair loss and fatigue...among other things that I can't think of because of the chemo. It also affects the brain, in terms of things you can remember. This condition is called chemo-brain.
I am venting a little, but I just want to be a little raw in this post and tell what it is really like to be on chemo. I also want all of you to know that regardless of how much I don't feel like myself, the essence of me is still here. The kindness of all of you still shines through to my world. And, I know that I am healing. I know that this chemo, like the other meds I have taken before, has pushed me to the brink of what I think I can do...yet I don't really know my limits. I have always been able to handle any of these things that have come my way. I am still here. I am still alive. I was able to go wal-mart today and I was able to do things with Morgan and go to Jack's t-ball game. My kids have a happy life with their mom in it. Even though the medicines are melting away the perception of who I thought I was, I am grateful for them because I am alive.
I still believe in me. I still have faith that I will be okay. I still visualize myself as a 90-year-old granny teaching my grandkids how to ride a bike...with many books having already been published. As Michael always reminds me, I am already okay right here and now. I don't need anyone to tell me that I am healing. I am okay. I am already exactly who I need to be...in exactly the right moment in time. I may need to take up more yoga as it is a relaxing sport that also helps to strengthen. I also may add a painting class in the mix so that I can paint whatever I want in relation to my healing...and see my painting with my own blue eyes that are still the same
Don't get me wrong, I can't wait to get back on the bike. I can't wait to resume life as normal, but I probably need to learn to relax a little a take advantage of this season of rest. There are always other meds on the horizon and I know I will be on those newer drugs at some point. I also know it will be a new normal. My eyes will be more open to what I can do and my empathy will be unimaginable, I hope! My end goals are always to stabilize my cancer and help others through my whole experience. Helping others allows me to find purpose in my disease, but I do still believe that I will have healing. I hope that each of you believe in your ability to be well!
Thanks to all of you for your positive thoughts and prayers! They mean the world to me!
Blessings,
Lolo
Friday, June 20, 2008
Didn't make the cut...
When I was in elementary school and junior high, I just often copied off my big sister in terms of events and sports she would try out for. I did this with baseball, school choir, track, basketball, tennis, etc. I would often look at her experiences because she was just one year ahead of me and know what type of sports or things I would be doing the following year. I was playing follow the leader and my sister was the leader.
For the most part, this habit was formed out of convenience. My parents had one car most of the time we were growing up so it wasn't like they could take me to art classes and Heather to sports things. There was usually only one option and I was fine with it. I learned a lot about myself by playing team sports and I might have been too shy to play them had Heather not paved the way for me.
Heather and I were both successful in sports. We did very well in tennis...both in high school and in college. But, the first REAL sport we tried out for was the volleyball team in 8th grade. In the year that Heather tried out, she made the first cut for the team, but got cut on the final week. Heather was and still is a great athlete. She even plays league volleyball now sometimes with her high school friends and she is good. But, for some reason, she didn't make the final cut. I assume this was because there just wasn't enough time for the coach to assess all the kids in a slim two-week period. Regardless, Heather did not go out for volleyball the next year. She went out for tennis and took to the sport, beautifully.
So now that you know Heather's volleyball story, you should probably be able to guess mine. I did all the things she did. I made the first cut for volleyball and got cut the second week. I went out for tennis the next year and played varsity as a freshman. Looking back, it is clear to me that Heather and I were both meant to play tennis. We played well in the sport with little formal training and were well-known with the coaches in our conferences and got lots of awards. Tennis even paid for part of my college tuition.
However, we have a friend who is now the coach of the volleyball teams in our home town. She gave us both a Excelsior Springs Volleyball shirt last weekend because she had some extra ones...and I wore that shirt around Overland Park with pride one day this week. I am a t-shirt girl, at heart, so the t-shirt brought a lot of things to mind when I wore it. But, the main thing I remember was that at the time I "didn't make the cut" for the volleyball team, I was devastated. I felt rejected. Tennis wasn't available to me for another year and some of my friends were on the volleyball team. I was happy for them, but was sad for myself.
I was a girl without a sport, which was no-man's land as far as I was concerned. I did play basketball and do track in 8th grade, but they weren't as interesting to me as volleyball. I was just following the leader, as usual. Now throughout high school, I found tennis and I also figured out that I didn't have to play all the sports Heather did. So I cut basketball and track from my calendar and took on other academic and social activities (e.g. student council, school newspaper, etc). I found that I grew more by making time for the things I wanted to do, not just following the path of my cool big sis.
But, I must admit that it took me wearing the shirt the other day to really think about the fact that it wasn't rejection I was facing when I was cut from the team. It was just a door that was closed. I needed to wait for that door to tennis to open in a year. I am going to try to remember this lesson when it comes to my cancer experience. I know I am on the right path and I believe in all of our health decisions. It seems that there have been some doors closed to me, but maybe the fact is that some other better options are going to open up soon. Or maybe this is just a part of the journey...that the waiting period for true healing is where the learning takes place. Maybe I just need to learn a little more.
Like I said, I am tenacious about research and my medical care. I can tolerate both chemotherapy and surgery pretty well. In fact, sometimes I wonder if I was made for it...clearly, I have been toughened up for this journey. I am not sure why, but I seem to have the constitution for it. Regardless, I know I will survive and that healing is taking place every single day in my little body. I don't need the big results to know that things are working.
And when a door closes, I will try to remember my volleyball journey that seemed so devastating at the time, but was right on the money in terms of my athletic path at Excelsior Springs High! And for you girls who read the blog and were on the volleyball team that year, please know I harbor no jealousy towards you. I was always so psyched to see you all play and see how you had grown from novice players to athletes. It was pretty cool.
I hope each and every one of you are finding your niche in life, not just the niche that you think you are supposed to do...but where your passion and skills come together and you feel that you are in your ZONE because that is MAGIC! I think I have found this with being a mommy, writing and cycling. I am blessed.
Blessings,
Lolo
For the most part, this habit was formed out of convenience. My parents had one car most of the time we were growing up so it wasn't like they could take me to art classes and Heather to sports things. There was usually only one option and I was fine with it. I learned a lot about myself by playing team sports and I might have been too shy to play them had Heather not paved the way for me.
Heather and I were both successful in sports. We did very well in tennis...both in high school and in college. But, the first REAL sport we tried out for was the volleyball team in 8th grade. In the year that Heather tried out, she made the first cut for the team, but got cut on the final week. Heather was and still is a great athlete. She even plays league volleyball now sometimes with her high school friends and she is good. But, for some reason, she didn't make the final cut. I assume this was because there just wasn't enough time for the coach to assess all the kids in a slim two-week period. Regardless, Heather did not go out for volleyball the next year. She went out for tennis and took to the sport, beautifully.
So now that you know Heather's volleyball story, you should probably be able to guess mine. I did all the things she did. I made the first cut for volleyball and got cut the second week. I went out for tennis the next year and played varsity as a freshman. Looking back, it is clear to me that Heather and I were both meant to play tennis. We played well in the sport with little formal training and were well-known with the coaches in our conferences and got lots of awards. Tennis even paid for part of my college tuition.
However, we have a friend who is now the coach of the volleyball teams in our home town. She gave us both a Excelsior Springs Volleyball shirt last weekend because she had some extra ones...and I wore that shirt around Overland Park with pride one day this week. I am a t-shirt girl, at heart, so the t-shirt brought a lot of things to mind when I wore it. But, the main thing I remember was that at the time I "didn't make the cut" for the volleyball team, I was devastated. I felt rejected. Tennis wasn't available to me for another year and some of my friends were on the volleyball team. I was happy for them, but was sad for myself.
I was a girl without a sport, which was no-man's land as far as I was concerned. I did play basketball and do track in 8th grade, but they weren't as interesting to me as volleyball. I was just following the leader, as usual. Now throughout high school, I found tennis and I also figured out that I didn't have to play all the sports Heather did. So I cut basketball and track from my calendar and took on other academic and social activities (e.g. student council, school newspaper, etc). I found that I grew more by making time for the things I wanted to do, not just following the path of my cool big sis.
But, I must admit that it took me wearing the shirt the other day to really think about the fact that it wasn't rejection I was facing when I was cut from the team. It was just a door that was closed. I needed to wait for that door to tennis to open in a year. I am going to try to remember this lesson when it comes to my cancer experience. I know I am on the right path and I believe in all of our health decisions. It seems that there have been some doors closed to me, but maybe the fact is that some other better options are going to open up soon. Or maybe this is just a part of the journey...that the waiting period for true healing is where the learning takes place. Maybe I just need to learn a little more.
Like I said, I am tenacious about research and my medical care. I can tolerate both chemotherapy and surgery pretty well. In fact, sometimes I wonder if I was made for it...clearly, I have been toughened up for this journey. I am not sure why, but I seem to have the constitution for it. Regardless, I know I will survive and that healing is taking place every single day in my little body. I don't need the big results to know that things are working.
And when a door closes, I will try to remember my volleyball journey that seemed so devastating at the time, but was right on the money in terms of my athletic path at Excelsior Springs High! And for you girls who read the blog and were on the volleyball team that year, please know I harbor no jealousy towards you. I was always so psyched to see you all play and see how you had grown from novice players to athletes. It was pretty cool.
I hope each and every one of you are finding your niche in life, not just the niche that you think you are supposed to do...but where your passion and skills come together and you feel that you are in your ZONE because that is MAGIC! I think I have found this with being a mommy, writing and cycling. I am blessed.
Blessings,
Lolo
Thursday, June 19, 2008
Had another chemo session today.
My mom went with me because Micael is out of town. I seem to be running a low grade fever right now, which is more of annoyance than anything else. I was having some allergic reactions to meds last week. I got some hives overnight and had difficulty sleeping because my scalp hurt due to all the activity on my scalp. My poor follicles don't know whether to grow hair or produce a rash. However, all of these things are usually signs that the meds are doing their work. So I got an antibiotic for my skin issues and will see if it helps me tolerate the meds better.
I was able to get back into the mode of life last week and Jack and I went swimming with my sister and her boys. Michael and Morgan are out of town this week at Michael's annual service project: Missouri Boy's State. This program means a lot to him, but we miss him desperately when he is gone. Morgan is now able to go hang out with some of the other leader's kids so she has had a blast running around Warrensburg, Missouri all week. I think I am getting a sneak peak to what college life will be like for me when Morgan is gone. There has been a lot of busyness for her and a lot of learning and a lot of making new friends. She is coming out of her shy shell, which is wonderful to see your child bloom.
We will have full body scans on Monday. Though we all think the medicines are working, there really is no way of knowing until they do Positron Emission Tomography(PET) and CT scans. These scans, as you can probably imagine, make me a bit of a nervous wreck. Knowing this detailed information has saved my life over and over, but it usually has provided us with new information regarding growth of my cancer. I believe this time will be a turn-around and that we will see progress. Yet, I will just try to go to the scans and have them done, then forget about them.
I have the doctors call Michael with the results because I want to just keep moving on. Psychologically, it helps me to hear the information from Michael because even though I love my doctors...I do feel rejected by the medical community, at times. It is not the doctors who make me feel this way, it is the fact that I have gotten bad results on these scans more than I have gotten good news. It is like getting a bad grade on a standardized exam over and over. You don't shoot the messenger, but it still makes you feel less of an individual since you can't quite make the grade.
This is how these scans have made me feel. However, I am really working on myself psychologically, spiritually and mentally to guard my heart and mind only for positivity. I have always believed my story is about healing. So, I try not to worry about the baby steps along the way, but just see myself at the finish line...winning the victory against cancer.
I will, of course, keep you posted about my experiences with the scans. Most likely, we will continue on chemo even if the results are good. The thinking is probably why mess with a good thing...who knows? The nice thing is in this situation, they would cut out one of my chemos altogether. That would increase my quality of life and help me get back to the bike. Being on the bike helps my sanity and reminds me of who I am...so more than anything else, I need and want to get back on the bike soon. I will have to be patient, but progress will happen both in my fight against cancer and to get back on the bike.
Blessings,
Lolo
I was able to get back into the mode of life last week and Jack and I went swimming with my sister and her boys. Michael and Morgan are out of town this week at Michael's annual service project: Missouri Boy's State. This program means a lot to him, but we miss him desperately when he is gone. Morgan is now able to go hang out with some of the other leader's kids so she has had a blast running around Warrensburg, Missouri all week. I think I am getting a sneak peak to what college life will be like for me when Morgan is gone. There has been a lot of busyness for her and a lot of learning and a lot of making new friends. She is coming out of her shy shell, which is wonderful to see your child bloom.
We will have full body scans on Monday. Though we all think the medicines are working, there really is no way of knowing until they do Positron Emission Tomography(PET) and CT scans. These scans, as you can probably imagine, make me a bit of a nervous wreck. Knowing this detailed information has saved my life over and over, but it usually has provided us with new information regarding growth of my cancer. I believe this time will be a turn-around and that we will see progress. Yet, I will just try to go to the scans and have them done, then forget about them.
I have the doctors call Michael with the results because I want to just keep moving on. Psychologically, it helps me to hear the information from Michael because even though I love my doctors...I do feel rejected by the medical community, at times. It is not the doctors who make me feel this way, it is the fact that I have gotten bad results on these scans more than I have gotten good news. It is like getting a bad grade on a standardized exam over and over. You don't shoot the messenger, but it still makes you feel less of an individual since you can't quite make the grade.
This is how these scans have made me feel. However, I am really working on myself psychologically, spiritually and mentally to guard my heart and mind only for positivity. I have always believed my story is about healing. So, I try not to worry about the baby steps along the way, but just see myself at the finish line...winning the victory against cancer.
I will, of course, keep you posted about my experiences with the scans. Most likely, we will continue on chemo even if the results are good. The thinking is probably why mess with a good thing...who knows? The nice thing is in this situation, they would cut out one of my chemos altogether. That would increase my quality of life and help me get back to the bike. Being on the bike helps my sanity and reminds me of who I am...so more than anything else, I need and want to get back on the bike soon. I will have to be patient, but progress will happen both in my fight against cancer and to get back on the bike.
Blessings,
Lolo
Tuesday, June 17, 2008
The YOU doctors...
One more thing in relation to books and web sites. The YOU doctors are the ones who wrote "YOU, the owner's manual", "YOU, the smart patient", " YOU on a DIET", etc. They are Drs. Oz and Roizon. They are associated with realage.com, which is a great web site and Dr Oz is on Oprah all of the time. Whether you like Oprah or not, she is pretty smart about the people she puts on her show on a consistent basis. I think the docs are plainspoken. I have the owner's manual and I loved it. I also have the smart patient book, it was empowering to read that most doctors really want informed patients. They make reading about your health and body extremely interesting. Just another book to consider.
Blessings,
Lolo
Blessings,
Lolo
Added some links to the right.
I added some links to some interesting web sites that talk about diet and nutrition. One thing I wanted to mention was that "Eating Right 4 Your Blood Type" is a great book that helped me assimilate many theories of nutritional health. There are many theories to you could ascribe to and when I started this journey, it was overwhelming. There are the people who think you should ONLY eat vegetarian, or increase SOY or decrease SOY or take out all artificial sweeteners or reduce all processed foods.
Eating Right 4 Your Blood type helped explain a lot of things for me. It helped me understand why my husband, who is a Type O, prefers eating meat at all meals. While I am a Type A and prefer mostly a vegetarian way of life, yet I can and do eat lean meats. The book helps explain why some "diets" are more successful for some people while they don't work for others at all. It also outlines many other preferences that would work best for every blood type, including supplements, exercise. personality traits.
I found that this book was extremely enlightening and it explained traits about Michael and me perfectly. I used this book to help me understand that regardless how much I would want to push vegetarian living in our household, that it might not be the most reasonable thing to do for Michael or Jack or Mo. It might not be the best thing for their bodies. I am still working to get the kid's blood types, but I will. This book helped me to assimilate all the other theories and work towards balanced living. Meaning, I probably can't cut all meats out of our diet, nor should I...even though many books recommend it.
My two theories that I think can prevent most long-term illnesses are alkalinizing and to oxygenating the body at the cellular level. I take some supplements to help with this when I am not doing a strong chemo. I don't like anything to interfere with my meds while taking them so I cut the supplements out for now. For example, I don't want to do a liver detox program if the meds I am taking are toxic. I want them to do their magic, then I will do a detox and take on my supplements again.
I hope this helps. In the least, I think these web sites can awaken you to some different options..regardless of if you decide to purchase the books or the detox programs. (Just so you know, I don't have any connection with these sites. I have independently reviewed the information and I form my own opinions. I encourage you to do the same!)
Blessings,
Lolo
Eating Right 4 Your Blood type helped explain a lot of things for me. It helped me understand why my husband, who is a Type O, prefers eating meat at all meals. While I am a Type A and prefer mostly a vegetarian way of life, yet I can and do eat lean meats. The book helps explain why some "diets" are more successful for some people while they don't work for others at all. It also outlines many other preferences that would work best for every blood type, including supplements, exercise. personality traits.
I found that this book was extremely enlightening and it explained traits about Michael and me perfectly. I used this book to help me understand that regardless how much I would want to push vegetarian living in our household, that it might not be the most reasonable thing to do for Michael or Jack or Mo. It might not be the best thing for their bodies. I am still working to get the kid's blood types, but I will. This book helped me to assimilate all the other theories and work towards balanced living. Meaning, I probably can't cut all meats out of our diet, nor should I...even though many books recommend it.
My two theories that I think can prevent most long-term illnesses are alkalinizing and to oxygenating the body at the cellular level. I take some supplements to help with this when I am not doing a strong chemo. I don't like anything to interfere with my meds while taking them so I cut the supplements out for now. For example, I don't want to do a liver detox program if the meds I am taking are toxic. I want them to do their magic, then I will do a detox and take on my supplements again.
I hope this helps. In the least, I think these web sites can awaken you to some different options..regardless of if you decide to purchase the books or the detox programs. (Just so you know, I don't have any connection with these sites. I have independently reviewed the information and I form my own opinions. I encourage you to do the same!)
Blessings,
Lolo
Sunday, June 15, 2008
If you see this newscaster...
Ok, so I am not really a newscaster, but I think all wigs pretty much look like newscaster hair. Every hair is in place, it is just kind of funny. I really hate the hair loss process of the chemotherapy, however, once it is all gone it is a lot easier to accept. Right now, I am opting for a lot of do-rags and hats, just because they are not as hot as a wig and my scalp is still pretty sore. But honestly, wigs aren't so bad. This one was pretty reasonably priced and my hair stylist cut it for me so it looks more like my normal hair. I think it probably does look better than my real hair and it certainly is easier to maintain. You just throw it on and GO!
However, part of me feels fake wearing a wig. I want to tell people I see that it is fake so they don't think I am trying to cover anything up. It is ridiculous of me to worry about it as much as I do...so I am trying not to. I am working on throwing vanity aside for my health. I have done it before so I will do it again. I am also working on NOT trying to make people feel comfortable with my cancer. Not everyone is comfortable with talking about things directly and that is okay. That is why the blog is a good thing for me because I can educate those that want to learn from my experience. I can also update people and let them know I am okay. This journey is so interesting, I think I learn so much from everyone else.
My own hair is starting to grow back in already. My scalp actually hurt pretty bad this weekend because one of my meds causes a rash on the scalp while the other meds (chemo) have made the hair fall out. I think my poor follicles are really confused, but it does seem that the hair-growing process is winning out over anything else. I am sure I will have some good hair growth to show in a couple of weeks or so, but for now...I will just show you some of my looks every once in a while. I do feel silly putting pictures of myself up here, but I think it is important so that you all can see that I look fine and that I am doing well. The point is to show what it is like to live with cancer. Last week was a doozy for me, but for the most part, the days are pretty good and the side effects are tolerable. And, I am loved and getting healthier every day...it seems that my life is pretty good. I have much to be thankful for.
Alright, more later. I hope all of you had an exceptional Father's Day!
Blessings,
Lolo
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