ROUND 6 DAY 19
This round has treated me to mouth sores galore. With some rounds, I would get one or two and other rounds, I would get none. This time around I have had at least 4, on both sides of my mouth. I'm going on a week where it's been very difficult to eat because of the pain when food hits the sores. And since I haven't been able to eat much, I have felt very weak. But, the sores are healing and each day I'm able to eat a little bit easier - avoiding anything with salt - and I should be able to regain my strength over time.
MUGA SCAN
Tuesday, I went in for a heart test called a MUGA scan. I hadn't had one of these before. With at least one of the chemo drugs (probably 2), there's a chance that there's been some damage done to my heart. With this test, they can produce a moving image of the heart and access the health of the heart's major pumping chamber (the left ventricle). My oncologist should have the results before my next treatment, which will be Monday. Here is a description of the test:
When a MUGA scan is performed, a small amount of a radioactive isotope is attached to red blood cells and then injected into the blood stream. The isotope emits weak gamma rays which can be dtected with a special camera positioned over the patient. As the blood fills the ventricles or chambers of the heart, the camera picks up a clear picture of the heart's function, creating an animated image of the beating heart which is used in diagnostics.
GENETIC TESTING
Wednesday, I met with a genetic counselor at the cancer center. My great-grandmother died from breast cancer that had moved to her lung(s). Because of that, my oncologist wanted me to meet with the counselor and possibly have testing done to see if I have the BRCA1 or BRCA2 gene that is inherited.
I most likely don't since there are no other cases of breast or ovarian cancer in my family. But because there are no other cases in relatives close to me, my (and most) insurance company won't pay for the testing. I could pay for it out of pocket, but it would be around $3500 and I think we'll either pass on that, or at least wait.
HERCEPTIN
Monday will be my first treatment of only the drug Herceptin. I've been told that there are little to no side effects from this drug. I am looking forward to seeing if this is true and going back to living without all the side effects I've dealt with over the past five months. Woo-hoo!
Thursday, September 9, 2010
Monday, September 6, 2010
CHILDHOOD CANCER
September is Childhood Cancer Awareness Month. The objective of this month is to spotlight childhood cancer and survivorship issues related to childhood cancer nationally. My knowledge of childhood cancer is limited so I went online to read up on the subject. I can only provide some facts here because I don't, thankfully, have any first hand knowledge or interaction with childhood cancer.
Childhood cancer is almost a misnomer, because those who survive the disease actually have it for life. The lifelong impact of having cancer as a child is just one of the messages that should be shared during Childhood Cancer Awareness Month, and every month of the year.
Cancer is diagnosed in approximately 12,400 children between birth and age 19 years in the United States each year. Cancers that are common among adults (e.g., lung, breast prostate, colon) are rare in children and adolescents. Among the 12 major types of childhood caners, leukemias and cancers of the brain and central nervous system represent more that 50 percent of new cases. Leukemias account for about one-third of cancers in children. Childhood cancer is the most common cause of death by disease for young people in the United States.
Since 1970, the overall survival rate for childhood cancer has improved dramatically, with a close to 80 percent five-year survival today. Currently there are an estimated 270,000 survivors of childhood cancer living in the United States.
Just because a child survives cancer, however, does not mean that he or she is home free. Cancer in children tends to be more aggressive than that seen in adults, and thus treatment is aggressive as well. The impace of vigorous treatment administered when children are growing and their brains and other organs and systems are developing can be devastating and long-lasting.
Someone I knew from our old church has a son who was diagnosed with a rare form of sarcoma a few months ago. I read the updates sent out and pray regularly for this little boy. I've done a lot of thinking about what it would be like to have a child with cancer. I think one can only imagine such a thing to a small degree.
I know what it's like to receive a diagnosis, the emotional drain of processing that information, and going through chemo. I think as a parent of a child diagnosed with cancer, you would be the one to deal with the diagnosis and acceptance of that diagnosis while not being able to do anything but watch (and pray) for your child who has to go through any physical pain that might exist and deal with the effects of chemo therapy. I think that would be one of the hardest things an adult could go through.
Having a month to spotlight such a heart-breaking issue is a good thing but let's not forget these children, and their families, the other eleven months.
If you would like more information or visit sites that help continue the fight against childhood cancers, check out the links on my sidebar.
Childhood cancer is almost a misnomer, because those who survive the disease actually have it for life. The lifelong impact of having cancer as a child is just one of the messages that should be shared during Childhood Cancer Awareness Month, and every month of the year.
Cancer is diagnosed in approximately 12,400 children between birth and age 19 years in the United States each year. Cancers that are common among adults (e.g., lung, breast prostate, colon) are rare in children and adolescents. Among the 12 major types of childhood caners, leukemias and cancers of the brain and central nervous system represent more that 50 percent of new cases. Leukemias account for about one-third of cancers in children. Childhood cancer is the most common cause of death by disease for young people in the United States.
Since 1970, the overall survival rate for childhood cancer has improved dramatically, with a close to 80 percent five-year survival today. Currently there are an estimated 270,000 survivors of childhood cancer living in the United States.
Just because a child survives cancer, however, does not mean that he or she is home free. Cancer in children tends to be more aggressive than that seen in adults, and thus treatment is aggressive as well. The impace of vigorous treatment administered when children are growing and their brains and other organs and systems are developing can be devastating and long-lasting.
Someone I knew from our old church has a son who was diagnosed with a rare form of sarcoma a few months ago. I read the updates sent out and pray regularly for this little boy. I've done a lot of thinking about what it would be like to have a child with cancer. I think one can only imagine such a thing to a small degree.
I know what it's like to receive a diagnosis, the emotional drain of processing that information, and going through chemo. I think as a parent of a child diagnosed with cancer, you would be the one to deal with the diagnosis and acceptance of that diagnosis while not being able to do anything but watch (and pray) for your child who has to go through any physical pain that might exist and deal with the effects of chemo therapy. I think that would be one of the hardest things an adult could go through.
Having a month to spotlight such a heart-breaking issue is a good thing but let's not forget these children, and their families, the other eleven months.
If you would like more information or visit sites that help continue the fight against childhood cancers, check out the links on my sidebar.
Monday, August 30, 2010
FLIP FLOP
Day 8 of round 6 and I'm feeling pretty well. First week went just like every other first week - a lot of sleeping. We'll have to see what week 2 has in store for me. Hopefully, it will be a fairly easy one since we're planning to go camping this weekend. Not only do I want to be able to camp, but I want to enjoy it.
Here's an interesting thing that happened at my last treatment...
As the technician was about to access my port, he realized something strange. Somehow the port, located under my skin, had flipped. It was no longer accessible because the back side was now facing outward. It kind of freaked me out. I try not to think about this foreign object that has been implanted within my body and now I had to come to terms with the fact that not only had it flipped but that it needed to be flipped back.
In case you're wondering how to flip an internal port without opening up the skin, one does it by grabbing it through the skin and flipping it. Not only is it difficult and painful, but no one is sure which way to flip it. And flipping it the wrong way would only twist the wires/tubing more in the wrong way and disable the flow of fluids in and out through the port.
John, the technician who usually handles my treatment (who, by the way, is just wonderful!) tried to flip it - unsuccessfully. He called over the second technician (also, wonderful) to give it a try. Unsuccessful. By this time, my skin is hurting and I'm worried that I'm not going to get my final "super" treatment that day. Not only that, but I'd have to have it corrected surgically. Ugh!
There was a third technician there that day. Usually it's just the two but on busier days, they have a third and we had met her before. She was asked to try. She had me lay back in the chair (where as I was sitting upright for the other attempts) and as quick as can be, she flipped it with ease. And when the port was tested to see if it worked properly - it did!
Obviously, I went on to get my full treatment and my port has stayed in place this last week. I was told to keep an eye on it as it could be easily flipped again. I was also told that it probably flipped while I was sleeping and because of the position I was sleeping in, and that it does happen occasionally. If it does flip again, I most likely will have to go into surgery and have it put back into place properly.
I'm praying that it will stay in place for the next 4-5 months.
Here's an interesting thing that happened at my last treatment...
As the technician was about to access my port, he realized something strange. Somehow the port, located under my skin, had flipped. It was no longer accessible because the back side was now facing outward. It kind of freaked me out. I try not to think about this foreign object that has been implanted within my body and now I had to come to terms with the fact that not only had it flipped but that it needed to be flipped back.
In case you're wondering how to flip an internal port without opening up the skin, one does it by grabbing it through the skin and flipping it. Not only is it difficult and painful, but no one is sure which way to flip it. And flipping it the wrong way would only twist the wires/tubing more in the wrong way and disable the flow of fluids in and out through the port.
John, the technician who usually handles my treatment (who, by the way, is just wonderful!) tried to flip it - unsuccessfully. He called over the second technician (also, wonderful) to give it a try. Unsuccessful. By this time, my skin is hurting and I'm worried that I'm not going to get my final "super" treatment that day. Not only that, but I'd have to have it corrected surgically. Ugh!
There was a third technician there that day. Usually it's just the two but on busier days, they have a third and we had met her before. She was asked to try. She had me lay back in the chair (where as I was sitting upright for the other attempts) and as quick as can be, she flipped it with ease. And when the port was tested to see if it worked properly - it did!
Obviously, I went on to get my full treatment and my port has stayed in place this last week. I was told to keep an eye on it as it could be easily flipped again. I was also told that it probably flipped while I was sleeping and because of the position I was sleeping in, and that it does happen occasionally. If it does flip again, I most likely will have to go into surgery and have it put back into place properly.
I'm praying that it will stay in place for the next 4-5 months.
Monday, August 16, 2010
ROUND 5, DAY 14
I thought I should post an update, mainly so I can look back and remember how I felt during the different rounds.
Round 1 was pretty easy in comparison to any round that followed. Round 3's hard week was relatively light and I cruised easily on into my good week. Rounds 2 and 4 were hard, each with their own set of problems and challenges.
And round 5 has been surprisingly (I was worried after round 4) good. After the first few days, when I was in the chemo "fog" and slept the hours away, I came out feeling pretty strong. I felt very weak at this same point during the previous rounds so I made a point of making sure I was eating regularly, which included eating protein. I really don't feel like eating at all during this time, so it's a little bit of a chore, but I knew I would feel stronger with food in my belly.
I also pushed myself to get up off the couch and do something each day. That, too, was a chore at times, but I knew it would help in the long run. And it did. Not only did I feel good that I accomplished something, but it helped with my energy level. I had to start out with small tasks, but each day I felt stronger and was able to take on more, and I slept better at night.
As I hit the middle of the second week, it was obvious to the whole family how well I was doing and how different it was from previous rounds. I still had to deal with some side effects (and still do), but they are manageable and I was able to accomplish many things that I wouldn't have done previously until my third/good week. And here I am starting my third/good week and I feel nearly (I said nearly!) how I felt prior to having any chemo at all, energy wise.
It's amazing, and a little confusing and scary. Why do I feel so good? Why is it so different from previous rounds? Why are rounds different at all? If this round is good, will the next one be hard? I don't have the answers. All I can do is enjoy what I'm feeling at the moment and accepting it as a gift. Who knows what next week holds.
One thing that is affecting me, but I've just learned to live with it, is that my fingers (on both hands) and toes (on my right foot) are, hopefully, temporarily tingling numb. I actually started noticing this side effect while camping nearly three weeks ago. I asked the doctor's assistant about it and she said that it is quite normal. It's a side effect of one of the drugs and it's accumulative, getting progressively worse until the drug is stopped.
So now, I can not only look forward to having my hair start growing back, but having the tingling/numbness in my extremities to go away. And I can start looking for both of those things in about a month's time. Next week will be my last "super" treatment (3 drugs). The six treatments after that should not generate most of the side effects that I deal with now. Hurray!
Round 1 was pretty easy in comparison to any round that followed. Round 3's hard week was relatively light and I cruised easily on into my good week. Rounds 2 and 4 were hard, each with their own set of problems and challenges.
And round 5 has been surprisingly (I was worried after round 4) good. After the first few days, when I was in the chemo "fog" and slept the hours away, I came out feeling pretty strong. I felt very weak at this same point during the previous rounds so I made a point of making sure I was eating regularly, which included eating protein. I really don't feel like eating at all during this time, so it's a little bit of a chore, but I knew I would feel stronger with food in my belly.
I also pushed myself to get up off the couch and do something each day. That, too, was a chore at times, but I knew it would help in the long run. And it did. Not only did I feel good that I accomplished something, but it helped with my energy level. I had to start out with small tasks, but each day I felt stronger and was able to take on more, and I slept better at night.
As I hit the middle of the second week, it was obvious to the whole family how well I was doing and how different it was from previous rounds. I still had to deal with some side effects (and still do), but they are manageable and I was able to accomplish many things that I wouldn't have done previously until my third/good week. And here I am starting my third/good week and I feel nearly (I said nearly!) how I felt prior to having any chemo at all, energy wise.
It's amazing, and a little confusing and scary. Why do I feel so good? Why is it so different from previous rounds? Why are rounds different at all? If this round is good, will the next one be hard? I don't have the answers. All I can do is enjoy what I'm feeling at the moment and accepting it as a gift. Who knows what next week holds.
One thing that is affecting me, but I've just learned to live with it, is that my fingers (on both hands) and toes (on my right foot) are, hopefully, temporarily tingling numb. I actually started noticing this side effect while camping nearly three weeks ago. I asked the doctor's assistant about it and she said that it is quite normal. It's a side effect of one of the drugs and it's accumulative, getting progressively worse until the drug is stopped.
So now, I can not only look forward to having my hair start growing back, but having the tingling/numbness in my extremities to go away. And I can start looking for both of those things in about a month's time. Next week will be my last "super" treatment (3 drugs). The six treatments after that should not generate most of the side effects that I deal with now. Hurray!
Wednesday, August 11, 2010
THERAPY
I'm a firm believer that each one of us needs to have ways that we can nurture ourselves and do it on a regular basis. It's a gift we give ourselves because it helps us keep our mental and emotional balance, and I honestly believe we deserve it.
Over the years, I've had several different ways of nurturing myself. What might have worked when my kids were young, didn't work in later years, as they grew older. My "therapy" changes with the phases of my life, and to be honest, I haven't found much that feeds my soul during this time of chemo treatments.
I used to get regular pedicures, feeling pampered with the massage and colored toes, but I can't have pedicures while undergoing chemo therapy due to the risk of infection. I used to love shopping or taking walks, but I haven't had the energy or motivation it takes to walk through a mall or store or even around the block. I love the sunshine and call the summer my favorite time of year because of all the ways I can be outside, soaking up the glorious light and heat. But this summer I've had to make sure I don't get much sun exposure. The chemicals in my body and the sun just don't mix (I've been told I'd burn very easy and most likely break out into a rash).
Even reading sometimes takes too much energy, and my books and blogs are ignored. And I used to feel like my writing (on my blog) was therapeutic, but have had no motivation to do this over the past few months.
So when I picked up a rental car a couple of days ago and the employee showed me how to put down the top on this sweet little convertible - and left it down, what was I supposed to do? Yes, it was in the middle of the day, sun shining and temps near the 90s. I knew I shouldn't drive home with the top down, even though home wasn't too far away. I thought it through, knew what I should do, but decided I was going to do what I wanted to do instead.
And it was glorious!
It was a gift!
It was therapeutic!
I drove it with the top down again the next day, during the heat of the day. And when Don got off work, we took a long drive enjoying the sun setting over our majestic rocky mountains. I took it out this morning, knowing I'd have to return it in the afternoon. No particular place to go - just wanting to enjoy driving with the wind whipping around me, the sun shining down on me, smelling the trees and flowers, and feeling a freedom I haven't felt for a while.
The only thing that could have made the experience any better was if I could feel the wind blowing through my hair.
Over the years, I've had several different ways of nurturing myself. What might have worked when my kids were young, didn't work in later years, as they grew older. My "therapy" changes with the phases of my life, and to be honest, I haven't found much that feeds my soul during this time of chemo treatments.
I used to get regular pedicures, feeling pampered with the massage and colored toes, but I can't have pedicures while undergoing chemo therapy due to the risk of infection. I used to love shopping or taking walks, but I haven't had the energy or motivation it takes to walk through a mall or store or even around the block. I love the sunshine and call the summer my favorite time of year because of all the ways I can be outside, soaking up the glorious light and heat. But this summer I've had to make sure I don't get much sun exposure. The chemicals in my body and the sun just don't mix (I've been told I'd burn very easy and most likely break out into a rash).
Even reading sometimes takes too much energy, and my books and blogs are ignored. And I used to feel like my writing (on my blog) was therapeutic, but have had no motivation to do this over the past few months.
So when I picked up a rental car a couple of days ago and the employee showed me how to put down the top on this sweet little convertible - and left it down, what was I supposed to do? Yes, it was in the middle of the day, sun shining and temps near the 90s. I knew I shouldn't drive home with the top down, even though home wasn't too far away. I thought it through, knew what I should do, but decided I was going to do what I wanted to do instead.
And it was glorious!
It was a gift!
It was therapeutic!
I drove it with the top down again the next day, during the heat of the day. And when Don got off work, we took a long drive enjoying the sun setting over our majestic rocky mountains. I took it out this morning, knowing I'd have to return it in the afternoon. No particular place to go - just wanting to enjoy driving with the wind whipping around me, the sun shining down on me, smelling the trees and flowers, and feeling a freedom I haven't felt for a while.
The only thing that could have made the experience any better was if I could feel the wind blowing through my hair.
Sunday, August 1, 2010
WHERE'S THE HAIR?
I wrote my last post on Don's Ipad while sitting in our pop-up camper which was sitting by a beautiful lake up high in the rocky mountains. I quickly wrote it as the family was waiting on me to start a rousing card game. I realized later that I should have explained better why talking to this pink sister was encouraging to me.
I think she and her story was so encouraging because I needed to be encouraged. I've gone through the process of the shock and sadness of losing my hair, accepting this fact, and then learning to live with no hair. I'm now at the stage where I'm just plain 'ole tired of being bald. I'm tired of wearing a hat, scarf, or wig every single day. I want my hair to grow in but so far, I just have a fine fuzz covering my head. I want to see more growth. I've even started to worry that I could be one of those rare cases where my hair doesn't grow back. I can't even imagine...
Seeing how much hair this woman had after such a short time brought my spirits up. I know I may not have the same results, but I am hopeful and can't wait until I'm done with the Taxotere, which should be August 23rd.
I think she and her story was so encouraging because I needed to be encouraged. I've gone through the process of the shock and sadness of losing my hair, accepting this fact, and then learning to live with no hair. I'm now at the stage where I'm just plain 'ole tired of being bald. I'm tired of wearing a hat, scarf, or wig every single day. I want my hair to grow in but so far, I just have a fine fuzz covering my head. I want to see more growth. I've even started to worry that I could be one of those rare cases where my hair doesn't grow back. I can't even imagine...
Seeing how much hair this woman had after such a short time brought my spirits up. I know I may not have the same results, but I am hopeful and can't wait until I'm done with the Taxotere, which should be August 23rd.
Thursday, July 29, 2010
PINK SISTER
I've often wondered if this would happen. And then I hoped it would - looking for the opportunity to present itself. A couple of days ago it did...
As my family and I were shopping in a small mountain town, I was approached by a sales lady who was eyeing my hat (which was desperately trying to make me look less bald). She said something nice about it and then immediately told me she just finished treatment for breast cancer and how she used to wear hats. After I told her we were pink sisters, she leaned in and we gave each other a hug.
I then asked her how long ago it had been since she had undergone chemotherapy and her reply surprised me beyond words. She said she still had a few treatments of Herceptin and that she finished her Taxotere/carboplatin treatments 2-3 months ago. Why was I so surprised, you might ask? Because she had a full head of thick, healthy hair. The length wasn't long but it wasn't all that short either. I couldn't believe it!!
I was so amazed (and envious) that I started peppering her with questions. She told me it started coming in pretty fast once she stopped with the taxotere. Different color and texture, but quickly and thickly. I'm telling you, I was so encouraged by what she told me and the way she looked that I'm still buoyed by this information and looking even more forward to me finishing off my sixth treatment (which will be my last Taxotere).
The opportunity that I talked about at the beginning was that I would cross paths with a fellow pink sister in which we would recognize our common plight in each other and be able to embrace each other, knowing that the bond we have is a special one.
As my family and I were shopping in a small mountain town, I was approached by a sales lady who was eyeing my hat (which was desperately trying to make me look less bald). She said something nice about it and then immediately told me she just finished treatment for breast cancer and how she used to wear hats. After I told her we were pink sisters, she leaned in and we gave each other a hug.
I then asked her how long ago it had been since she had undergone chemotherapy and her reply surprised me beyond words. She said she still had a few treatments of Herceptin and that she finished her Taxotere/carboplatin treatments 2-3 months ago. Why was I so surprised, you might ask? Because she had a full head of thick, healthy hair. The length wasn't long but it wasn't all that short either. I couldn't believe it!!
I was so amazed (and envious) that I started peppering her with questions. She told me it started coming in pretty fast once she stopped with the taxotere. Different color and texture, but quickly and thickly. I'm telling you, I was so encouraged by what she told me and the way she looked that I'm still buoyed by this information and looking even more forward to me finishing off my sixth treatment (which will be my last Taxotere).
The opportunity that I talked about at the beginning was that I would cross paths with a fellow pink sister in which we would recognize our common plight in each other and be able to embrace each other, knowing that the bond we have is a special one.
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