A few weeks ago, I had my usual round of every-three-month scans & tests. And also a bone scan. The CT scan of the chest & abdomen showed NO pleural effusion, NO enlarged lymph nodes, STABLE lung & liver mets and STABLE skeletal mets. I'll take it! Although I was hoping for more improvement, stability is better than progression. The bone scan was done because I hadn't had one in almost 3 years. My ortho doc thought it was a good idea to look at bones elsewhere in the body because for quite some time they've only been seeing the bones visible on my chest/abd CT scans, AND because the report of the MRI of the lumbar and sacral spine was so dismal. The bone scan showed "Multiple active osseous metastases, new/progressive compared to 04/2010 bone scan." Ewww. Horrible sounding, yes. But, to keep things in perspective, this is compared to a 2010 bone scan. Between 2010 and now, I've been through multiple treatment changes because of progression of the cancer in many areas of the body. We KNOW it's been progressing. We just haven't been closely monitoring the progression in the bones as in other places. So it's more specific information about the bones, it's not necessarily all brand new metastases and cause to panic and change treatment when clearly the current chemo is doing some good things.
Also based on the MRI findings, my ortho doc recommended radiation to the spine to try and alleviate the leg pain I've been having. That really threw me for a loop! And honestly, it disturbed me. I'm no doctor, but I have been around cancer for a very long time and I was a registered nurse for 10+ years. While I don't understand everything that radiologists put in scan reports, I do get a lot of it. And from what I was reading in my MRI report, although there was heavy cancer involvement in the spine, it was not impinging on the neural pathways leading away from the spine and into the leg. It wasn't clear to me that the spine mets was the cause of my leg pain. I didn't have any back pain. The pain didn't come from the back and radiate down the leg. In fact the pain was pretty far from my back. Perhaps it wasn't even related to my cancer, even though that is what I always want to rule out when I have any new symptom.
Let me say here that I DO NOT have time for radiation. The last thing I need is to have to go somewhere EVERY DAY for weeks. The last time I had radiation was 13 years ago after my mastectomy & chemo. Five days a week for 5 weeks. Easy peasy on the body, but highly inconvenient! I had a 13-year-old, a 3-year-old, and an infant. With a lot of family help, I got to those radiation appointments just fine. But now, with a 15-, 13- and 10-year-old at home and involved in all kinds of different activities and in 3 different schools, plus our own business to run, it wouldn't be as easy! Plus, it just seemed unnecessary to me. That's right, even though ortho doc is recommending radiation, Dr. Kim doesn't think she needs it. :)
I quietly took in all the information that I was given. After leaving the office, Danny and I talked and we both agreed that radiation seemed rather extreme at this time. Something else was also eating at me: the radiation that I had to the chest 13 years ago wasn't even successful at keeping the cancer at bay locally! At the time the cancer came back as stage IV, it also appeared as a local lesion right on the mastectomy scar! How could I be sure that radiation to the spine would alleviate the leg pain? Or even rid the spine of cancer? We both felt that the doctor wanted to find a cause and provide a treatment for my leg pain. I had an appointment scheduled with my breast cancer oncologist, Dr. Coscio, in the following couple weeks, and we decided to discuss the issue with her.
We explained the whole situation to Dr. Coscio, and she went along with our NOT wanting to have radiation. She wasn't convinced, either, that radiation was an appropriate treatment for me at this time. Instead, she referred me to a pain specialist to try and get to the bottom of my leg pain. I was able to see Dr. Chai that same day. He reviewed my scans and agreed that it didn't appear the spine issues were causing the leg pain. Since they did show some inflammation in the knee, I asked if I could take regular doses of some kind of anti-inflammatory. He prescribed one, to take daily, and also a pain med to take as needed.
Amazingly, the anti-inflammatory med has helped! It hasn't completely taken away the discomfort, but I am able to do a lot more than before, and I've even started walking a couple times a week. Like I always say, YOU HAVE TO STAY ON TOP OF YOUR HEALTHCARE! Were it not for us diligently questioning my treatment plan and the reasoning behind it, I would be getting radiation to the spine right now. Unnecessary, expensive, and inconvenient.
Now that I'm looking and feeling like a know-it-all, I want to clarify that if more than one of my doctors would have recommended radiation, I would have done it, absolutely. Sure, I would have complained, (most likely, a lot!) but I would never decline doctor-recommended treatment on the basis of inconvenience. In this case there was much more to consider. And 2 out of 3 of my doctors didn't think it was a good option.
So, so thankful that I'm still able to do all that I do! Blessed!
Thanks for reading.
Tuesday, March 5, 2013
Wednesday, January 23, 2013
FUNDING THE CURE - Recap & Update!
How about a little good news!?
If you're a regular follower of my blog or shop, you may remember that a little over a year ago, The Pink Ribbon Shop established The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson Cancer Center as a commitment to help FUND THE CURE for breast cancer. To establish the Fund and keep it going, we were required to commit to donating a minimum of $20,000 to the Fund in any four-year period. In the past, The Pink Ribbon Shop regularly donated to various organizations. But this was an official commitment! Could we do it?
We never imagined how successful this initiative would be! Within the first few months, we were able to donate $10,000 to the Fund, and we were ecstatic that in such a short time, we were already halfway to our $20,000 four-year commitment. This just ignited our passion to FUND THE CURE even more! We brainstormed ways that we could multiply our company's donations. We prayed that God would lead and guide us in our endeavor to make a difference.
I created The Pink Ribbon Roundup program (adorable western-themed logo and all!) in the hopes of allowing our customers to "round up" their change at checkout to be directed to our Fund as a donation. I had seen other companies do this for other causes, and I was super excited to implement something similar at The Pink Ribbon Shop. I thought who could really refuse to round up pennies for such a good cause?! Unfortunately, there were limitations of our shopping cart program that would not allow this to be an option. I even asked our software geeks if it could be done as a custom option. Time and time again I was told that it couldn't be done (something about it not being possible on our "platform," whatever that means!) There were private-software-company add-on programs out there, but they wanted to take 10% (and up) in "fees" from the donations. NO THANK YOU! This was extremely disappointing. Seriously -- I cried. I mean, after all, we had this really cute logo and name, and now it didn't make sense, at least not in the way I had hoped.
In the meantime, while I messed around with our shopping cart issues, God gave Danny the idea to create a special pink ribbon item whose proceeds would benefit the Fund. Since the pink silicone bracelet bands have always been one of our top sellers, it made sense that getting a custom band made just for this purpose could be a lucrative option. (Yay, I get to use the Pink Ribbon Roundup logo!) Additionally, we made the purchase price of these bracelets lower than all the others ($1.00 each) ... incentive for people to purchase them over all the others. I have to admit that this was a bit scary, from a business standpoint. We had to trust that our business could handle this change ... undercutting our own best-selling items with an item that made no profit whatsoever. On top of all of that, we also decided to donate the cost of the item, making the entire purchase price of this special bracelet band a donation to our Fund. In essence, we would be using money that we would donate anyway, to purchase the custom bracelets. Selling them = multiplying our donations! We sold our first Funding the Cure with The Pink Ribbon Roundup silicone bracelet band on May 8, 2012.
Somewhere in the midst of all of this (not sure of the exact timing,) we also set up a way for people to donate to the Fund through other avenues. A product page was set up whereby customers may donate $1.00, $5.00 or $10.00 to our Fund. We also created an MD Anderson myGiving page where tax-deductible donations can be made by individuals, groups or businesses. Trying to make it easy for anyone wanting to help fund the cure!
After exhausting the "rounding up" the change at checkout option, we decided to try a different route of having a simple question at checkout. A "checkout question" could supposedly have a dollar amount attached to any of its answers. Once set up, the specified dollar amount is added to the shopping cart. But this, too, was not meant to be. Yet another stumbling block! Although it appeared that you could associate a dollar amount to a checkout question, it didn't work. And we were told that it couldn't be done. After months of back & forths and frustrations with the software geeks about rounding up and checkout questions, it looked as if neither would ever happen. Why were my plans not working!!?? I was like, don't tell me it CAN'T be done, OF COURSE it CAN be done, you guys just won't do it! So frustrating. We prayed about it. Our own efforts weren't working! We just had to wait for God's timing. His answer came in the form of a software update: a dollar amount could now be associated with a checkout question's answer. Success! The "Donation Opportunity" was created. To make it simple, affordable and appealing to our customers, a simple click on the "Yes I would like to donate $1.00 to The Pink Ribbon Shop Fund for Breast Cancer Research" box during the checkout process donates $1.00 to our Fund. This went live on our website in July of 2012.
I want to add here that even when we think we have all the answers or best plans in life, we don't! God has a plan for all of us. Even our businesses! As it turned out, the $1.00 Donation Opportunity at checkout was a much simpler and fruitful option than the "rounding up" of change. AND, what was actually a Plan B, the Funding the Cure with The Pink Ribbon Roundup bracelets, turned out to be HUGELY SUCCESSFUL! And as far we can see, it didn't affect our bottom line at all. It only added thousands of dollars to our Research Fund!!!
Another exciting thing that started happening in 2012 was that groups were fundraising for our Fund! Local schools, youth football leagues, cheer squads, and even a senior living center hosted/held events whose proceeds were donated to The Pink Ribbon Shop Fund for Breast Cancer Research. We feel beyond blessed to live and work in such a generous, giving community! Thank you, Kingwood, Texas! There were others, outside of our community, that donated directly through our myGiving page. We don't get all the details when that happens, but we appreciate it nonetheless!
Lastly, this past October, our Fund had its first "corporate sponsorship" of sorts. Haydel's Bakery in New Orleans, Louisiana (our home town) created a pink ribbon king cake (for those of you who don't know, it's a New-Orleans-style pastry treat most popular during the Mardi Gras season) whose sales would benefit our Fund. Woohoo! May we have many, many more partnerships such as this!
I kept the Pink Ribbon Roundup as the umbrella name of our entire Funding the Cure fundraising program. No matter how you donate to our Fund, you've participated in The Pink Ribbon Roundup!
Whew! So are you ready for the good news!? The numbers are in! Drumroll.....................
A whopping $31,150.22 was donated to The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson Cancer Center in 2012!!! This surpasses our wildest dreams of how we would contribute to FUNDING THE CURE for breast cancer!
THANK YOU, THANK YOU, THANK YOU! to all of our customers and everyone who contributed to the Fund in any way! We couldn't have done it without YOU!
In just 13 months, our Research Fund at MD Anderson Cancer Center now has over $41,000 in it. We are in the process of choosing a research project to support. Yes, we actually get to pick one! So, so awesome.
Thank you again, and thanks for reading.
Kim
If you're a regular follower of my blog or shop, you may remember that a little over a year ago, The Pink Ribbon Shop established The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson Cancer Center as a commitment to help FUND THE CURE for breast cancer. To establish the Fund and keep it going, we were required to commit to donating a minimum of $20,000 to the Fund in any four-year period. In the past, The Pink Ribbon Shop regularly donated to various organizations. But this was an official commitment! Could we do it?
We never imagined how successful this initiative would be! Within the first few months, we were able to donate $10,000 to the Fund, and we were ecstatic that in such a short time, we were already halfway to our $20,000 four-year commitment. This just ignited our passion to FUND THE CURE even more! We brainstormed ways that we could multiply our company's donations. We prayed that God would lead and guide us in our endeavor to make a difference.
I created The Pink Ribbon Roundup program (adorable western-themed logo and all!) in the hopes of allowing our customers to "round up" their change at checkout to be directed to our Fund as a donation. I had seen other companies do this for other causes, and I was super excited to implement something similar at The Pink Ribbon Shop. I thought who could really refuse to round up pennies for such a good cause?! Unfortunately, there were limitations of our shopping cart program that would not allow this to be an option. I even asked our software geeks if it could be done as a custom option. Time and time again I was told that it couldn't be done (something about it not being possible on our "platform," whatever that means!) There were private-software-company add-on programs out there, but they wanted to take 10% (and up) in "fees" from the donations. NO THANK YOU! This was extremely disappointing. Seriously -- I cried. I mean, after all, we had this really cute logo and name, and now it didn't make sense, at least not in the way I had hoped.
In the meantime, while I messed around with our shopping cart issues, God gave Danny the idea to create a special pink ribbon item whose proceeds would benefit the Fund. Since the pink silicone bracelet bands have always been one of our top sellers, it made sense that getting a custom band made just for this purpose could be a lucrative option. (Yay, I get to use the Pink Ribbon Roundup logo!) Additionally, we made the purchase price of these bracelets lower than all the others ($1.00 each) ... incentive for people to purchase them over all the others. I have to admit that this was a bit scary, from a business standpoint. We had to trust that our business could handle this change ... undercutting our own best-selling items with an item that made no profit whatsoever. On top of all of that, we also decided to donate the cost of the item, making the entire purchase price of this special bracelet band a donation to our Fund. In essence, we would be using money that we would donate anyway, to purchase the custom bracelets. Selling them = multiplying our donations! We sold our first Funding the Cure with The Pink Ribbon Roundup silicone bracelet band on May 8, 2012.
Somewhere in the midst of all of this (not sure of the exact timing,) we also set up a way for people to donate to the Fund through other avenues. A product page was set up whereby customers may donate $1.00, $5.00 or $10.00 to our Fund. We also created an MD Anderson myGiving page where tax-deductible donations can be made by individuals, groups or businesses. Trying to make it easy for anyone wanting to help fund the cure!
After exhausting the "rounding up" the change at checkout option, we decided to try a different route of having a simple question at checkout. A "checkout question" could supposedly have a dollar amount attached to any of its answers. Once set up, the specified dollar amount is added to the shopping cart. But this, too, was not meant to be. Yet another stumbling block! Although it appeared that you could associate a dollar amount to a checkout question, it didn't work. And we were told that it couldn't be done. After months of back & forths and frustrations with the software geeks about rounding up and checkout questions, it looked as if neither would ever happen. Why were my plans not working!!?? I was like, don't tell me it CAN'T be done, OF COURSE it CAN be done, you guys just won't do it! So frustrating. We prayed about it. Our own efforts weren't working! We just had to wait for God's timing. His answer came in the form of a software update: a dollar amount could now be associated with a checkout question's answer. Success! The "Donation Opportunity" was created. To make it simple, affordable and appealing to our customers, a simple click on the "Yes I would like to donate $1.00 to The Pink Ribbon Shop Fund for Breast Cancer Research" box during the checkout process donates $1.00 to our Fund. This went live on our website in July of 2012.
I want to add here that even when we think we have all the answers or best plans in life, we don't! God has a plan for all of us. Even our businesses! As it turned out, the $1.00 Donation Opportunity at checkout was a much simpler and fruitful option than the "rounding up" of change. AND, what was actually a Plan B, the Funding the Cure with The Pink Ribbon Roundup bracelets, turned out to be HUGELY SUCCESSFUL! And as far we can see, it didn't affect our bottom line at all. It only added thousands of dollars to our Research Fund!!!
Another exciting thing that started happening in 2012 was that groups were fundraising for our Fund! Local schools, youth football leagues, cheer squads, and even a senior living center hosted/held events whose proceeds were donated to The Pink Ribbon Shop Fund for Breast Cancer Research. We feel beyond blessed to live and work in such a generous, giving community! Thank you, Kingwood, Texas! There were others, outside of our community, that donated directly through our myGiving page. We don't get all the details when that happens, but we appreciate it nonetheless!
Lastly, this past October, our Fund had its first "corporate sponsorship" of sorts. Haydel's Bakery in New Orleans, Louisiana (our home town) created a pink ribbon king cake (for those of you who don't know, it's a New-Orleans-style pastry treat most popular during the Mardi Gras season) whose sales would benefit our Fund. Woohoo! May we have many, many more partnerships such as this!
I kept the Pink Ribbon Roundup as the umbrella name of our entire Funding the Cure fundraising program. No matter how you donate to our Fund, you've participated in The Pink Ribbon Roundup!
Whew! So are you ready for the good news!? The numbers are in! Drumroll.....................
A whopping $31,150.22 was donated to The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson Cancer Center in 2012!!! This surpasses our wildest dreams of how we would contribute to FUNDING THE CURE for breast cancer!
THANK YOU, THANK YOU, THANK YOU! to all of our customers and everyone who contributed to the Fund in any way! We couldn't have done it without YOU!
In just 13 months, our Research Fund at MD Anderson Cancer Center now has over $41,000 in it. We are in the process of choosing a research project to support. Yes, we actually get to pick one! So, so awesome.
Thank you again, and thanks for reading.
Kim
Thursday, January 10, 2013
Hanging in there
Not been the best couple of weeks...
Still having pain behind knee. As long as I do virtually no activity, I feel good. Any time on my feet causes pain. I am not doing well with this! I am usually on the go and active. I haven't exercised in months, so have gained weight and am seriously deconditioned. I thought being home over the holidays and being able to take it easy while the kids were still off from school would be good, but it hasn't been good for my psyche. Saw orthopedist at MDA who confirmed Baker's cyst from ultrasound report, but could see nothing on my knee x-ray that would cause the cyst (which I figured, because I'm not having any knee problems.) So he ordered more tests: MRI of the lumbosacral spines, MRI of right leg, and x-ray of right femur. I've only had the MRI of the spine so far. The others had to be rescheduled because when they were scheduled, Danny was out of town on a church youth trip. Everything is delayed now, so I won't have the complete results and follow-up visit with the doctor for a couple more weeks. I had a horrible initial visit with the ortho doc, so the other issue that is delaying everything is my report to the Patient Advocacy Department and a physician change request. Uggh, long story, I'll explain later. Very much NOT like my usual MD Anderson visits. Oh I'm such a bad patient!
One good thing, yet bad thing, about the mymdanderson website, is that you can log in and view your medical record online. Seven days after having any test done, you can see the report. Generally, when I have anything done, I am seeing my doctor to get the results within that 7-day period. But because of the ortho issue mentioned above, it's been 7+ days since my spine MRI and my doctor appointment is still a ways away. So I looked. I probably shouldn't have. Of course I've always known of my bone mets to the spine from my frequent CT scans. But the MRI report sounds awful! Any time you start reading "widespread metastatic disease to the lumbosacral spine and posterior [bilateral] ilia," you know it can't be good. It was very upsetting, to say the least. I'm on chemo, but is this a new development or has it always been there, just not seen so well on my previous CT scans? Being that I've never had an MRI of the spine, there isn't anything from my past record that can be compared to it. Fortunately I did have an appointment with Dr. Coscio, my breast cancer oncologist, as a chemo check-in. She made me feel a whole lot better about the MRI findings. She showed me that the mets documented on the MRI were previously seen on the CT scans, just not in such detailed, high resolution as the MRI shows. And also, even the documented issues in the spine and ilia do not explain the leg pain. So, still no explanation for that. Not time for a treatment change, yet. Scheduled to have all my regular CT's, chest x-ray and labwork in February. Other than my leg discomfort, I am feeling pretty good physically. Passing my lung self-test! Not expecting any changes in the chest department.
Mentally, though, is another story. I think I have serious chemobrain, or else serious psychological and emotional issues. Maybe both! I can't remember anything anymore. It's like I'm in a fog. And I don't sleep well. Don't feel like doing anything. Danny says it's been difficult communicating with me. And we're having trouble getting along. I'm not nice. Just what a cancer patient needs, is a troubled marriage, right? It's a pretty sucky position to be in, but we are working through it. Praying a lot, just taking it day by day. We wouldn't have lasted over 20 years without getting through some ups and downs. Hopefully this, too, shall pass.
Still having pain behind knee. As long as I do virtually no activity, I feel good. Any time on my feet causes pain. I am not doing well with this! I am usually on the go and active. I haven't exercised in months, so have gained weight and am seriously deconditioned. I thought being home over the holidays and being able to take it easy while the kids were still off from school would be good, but it hasn't been good for my psyche. Saw orthopedist at MDA who confirmed Baker's cyst from ultrasound report, but could see nothing on my knee x-ray that would cause the cyst (which I figured, because I'm not having any knee problems.) So he ordered more tests: MRI of the lumbosacral spines, MRI of right leg, and x-ray of right femur. I've only had the MRI of the spine so far. The others had to be rescheduled because when they were scheduled, Danny was out of town on a church youth trip. Everything is delayed now, so I won't have the complete results and follow-up visit with the doctor for a couple more weeks. I had a horrible initial visit with the ortho doc, so the other issue that is delaying everything is my report to the Patient Advocacy Department and a physician change request. Uggh, long story, I'll explain later. Very much NOT like my usual MD Anderson visits. Oh I'm such a bad patient!
One good thing, yet bad thing, about the mymdanderson website, is that you can log in and view your medical record online. Seven days after having any test done, you can see the report. Generally, when I have anything done, I am seeing my doctor to get the results within that 7-day period. But because of the ortho issue mentioned above, it's been 7+ days since my spine MRI and my doctor appointment is still a ways away. So I looked. I probably shouldn't have. Of course I've always known of my bone mets to the spine from my frequent CT scans. But the MRI report sounds awful! Any time you start reading "widespread metastatic disease to the lumbosacral spine and posterior [bilateral] ilia," you know it can't be good. It was very upsetting, to say the least. I'm on chemo, but is this a new development or has it always been there, just not seen so well on my previous CT scans? Being that I've never had an MRI of the spine, there isn't anything from my past record that can be compared to it. Fortunately I did have an appointment with Dr. Coscio, my breast cancer oncologist, as a chemo check-in. She made me feel a whole lot better about the MRI findings. She showed me that the mets documented on the MRI were previously seen on the CT scans, just not in such detailed, high resolution as the MRI shows. And also, even the documented issues in the spine and ilia do not explain the leg pain. So, still no explanation for that. Not time for a treatment change, yet. Scheduled to have all my regular CT's, chest x-ray and labwork in February. Other than my leg discomfort, I am feeling pretty good physically. Passing my lung self-test! Not expecting any changes in the chest department.
Mentally, though, is another story. I think I have serious chemobrain, or else serious psychological and emotional issues. Maybe both! I can't remember anything anymore. It's like I'm in a fog. And I don't sleep well. Don't feel like doing anything. Danny says it's been difficult communicating with me. And we're having trouble getting along. I'm not nice. Just what a cancer patient needs, is a troubled marriage, right? It's a pretty sucky position to be in, but we are working through it. Praying a lot, just taking it day by day. We wouldn't have lasted over 20 years without getting through some ups and downs. Hopefully this, too, shall pass.
Friday, December 7, 2012
Brief Update
Well I thought that once October ended, I would have more time to blog, but that hasn't been the case. We just hosted a Christmas party last weekend, and its grown so much it's pretty much taken on a life of its own ... I can't help putting so much time and energy into it! More details later, but WHEW! It was awesome, but I feel relief that it's over. Now onto finishing my Christmas shopping -- been squeezing in some online shopping for a few weeks already. Love Christmas time!!
I've been feeling pretty good. Didn't know that Abraxane was going to cause my fingernails to begin separating from the nailbeds. Eww! Not pretty! And I have to be careful doing laundry and other things that put pressure on the fingernails, which you'd be surprised at how much does that. Also been having pain behind the knee (popliteal area, back of leg) whenever I'm on my feet for more than 30 minutes. This has been since I first started chemo, and it's not going away. Curious to know what is causing that. Of course, I've self-diagnosed myself as having a Baker's cyst, which is isn't actually a cyst but a buildup of fluid at that location that's caused by some underlying problem, usually the knee. But my knee isn't hurting me and I don't know what that underlying problem could be, other than something cancer-related. Sighhhh. Planning to mention that to my oncologist next week. Will probably get an ortho consult to get checked out. Having excessive, watery nose running that's downright weird and VERY annoying. Please explain this, Dr. Coscio! Still have chemo fuzz on the head. Only a few eyelashes left, so mascara is futile. Eyebrows are very sparse also. Oh the joys!
But right now: enjoying my week off between chemo cycles, and being home more in my Christmas-decorated house.
Thanks for reading!
I've been feeling pretty good. Didn't know that Abraxane was going to cause my fingernails to begin separating from the nailbeds. Eww! Not pretty! And I have to be careful doing laundry and other things that put pressure on the fingernails, which you'd be surprised at how much does that. Also been having pain behind the knee (popliteal area, back of leg) whenever I'm on my feet for more than 30 minutes. This has been since I first started chemo, and it's not going away. Curious to know what is causing that. Of course, I've self-diagnosed myself as having a Baker's cyst, which is isn't actually a cyst but a buildup of fluid at that location that's caused by some underlying problem, usually the knee. But my knee isn't hurting me and I don't know what that underlying problem could be, other than something cancer-related. Sighhhh. Planning to mention that to my oncologist next week. Will probably get an ortho consult to get checked out. Having excessive, watery nose running that's downright weird and VERY annoying. Please explain this, Dr. Coscio! Still have chemo fuzz on the head. Only a few eyelashes left, so mascara is futile. Eyebrows are very sparse also. Oh the joys!
But right now: enjoying my week off between chemo cycles, and being home more in my Christmas-decorated house.
Thanks for reading!
Monday, November 12, 2012
Great news & happy days
Well, I finally had my CT scans & chest x-ray to determine the effectiveness of Abraxane, which I have been on for 12 weeks. It's working! CT scan of the chest shows "Interval response to therapy with improved left pleural effusion and pleural nodularities." That was the final impression. The body of the report actually says "The previously seen left pleural effusion has resolved. The bilateral pleural nodularity has improved since the prior studies. No new pulmonary nodule or mass is seen. The overall appearance would be suggestive of complete response to therapy." In non-medical jargon, this means that they can no longer see fluid around my left lung, the nodules previously seen in both lungs are now smaller than before, and there are no new areas of cancer. WOW! I haven't seen language this positive in any of my medical reports in a long time! Amazing! Wonderful! The CT scan of the abdomen is not as glowing, but still pretty good: "Stable treated bilobar hepatic metastasis. Resolved left para-aortic adenopathy. Stable bony metastasis." This means that the cancerous lesions in both lobes of my liver are unchanged. No better, but no worse either. The enlarged lymph node previously seen near my abdominal aortic artery is no longer enlarged. This is good. And, the metastatic lesions seen in multiple bony areas are unchanged. No new cancer seen anywhere. Yay! Makes the hair loss and other chemo side effects all worthwhile! I have not seen my chest x-ray results, but I have to assume that they are similarly positive in nature.
And while I'm on happy news, I want to share what my sweet Christa (my 15 year-old) did. She's a 10th grader and is taking a Speech class. Her teacher assigned everyone to write/present a speech on a "Real Life Hero." She chose me! I didn't know about it until after she presented, but she got a 100 on it! And she must have delivered it quite effectively, because at the end, her teacher said "Wow. I don't know how we can hear something like that and not DO something." I was so proud, and happy, and overcome with joy that my daughter would choose me as her "real life hero"! How awesome is that!? What a MOM moment!
Mr. Langston, the speech teacher, discussed with Christa the possibility of the class doing some sort of fundraiser for our Fund (The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson.) Perhaps something that involved all four of his speech classes. They considered purchasing a Pink Ribbon King Cake for each class to enjoy (sold through a New Orleans-based bakery in October and whose sales benefit the Fund,) but decided that it was a bit too pricey for a high school class to have shipped from N.O. to Kingwood, TX. In the end, Mr. Langston left it up to Christa as to what to do. Once she told me about it all, I, of course, wanted to do all I could to assist with this impromptu project. I suggested that the classes have a competition as to who could raise the most money, with the winner getting a Pink Ribbon King Cake party, compliments of The Pink Ribbon Shop. Christa thought that sounded great! Mr. Langston and the other students agreed, and Christa and I set to work on working out the logistics. The contest would run through the end of October (about 3 weeks from start date.) We made slotted tops out of pink cardstock to replace the metal tops of four large mason jars (one for each class period to collect funds in.) Each jar was labeled with the appropriate class period number. I donated our Pink Ribbon Roundup bands and hot pink satin ribbon pins, one of which each student could take whenever they made a donation into the class jar. Christa and Mr. Langston worked together in explaining the project to each class (his other speech classes had not had the opportunity to hear Christa's speech.) In less than 3 weeks time, four high school speech classes had raised $645.43!!! So, so proud of Christa, and amazed at the generosity of these kids (and perhaps their families!) The Pink Ribbon King Cake was delivered to the winning class the following week, and from what I hear, everyone enjoyed it. Love this story. :))))))
Thanks for reading. Much, much more to come, as October was a busy month. Can't put it all down in just one or two blog posts!
And while I'm on happy news, I want to share what my sweet Christa (my 15 year-old) did. She's a 10th grader and is taking a Speech class. Her teacher assigned everyone to write/present a speech on a "Real Life Hero." She chose me! I didn't know about it until after she presented, but she got a 100 on it! And she must have delivered it quite effectively, because at the end, her teacher said "Wow. I don't know how we can hear something like that and not DO something." I was so proud, and happy, and overcome with joy that my daughter would choose me as her "real life hero"! How awesome is that!? What a MOM moment!
Mr. Langston, the speech teacher, discussed with Christa the possibility of the class doing some sort of fundraiser for our Fund (The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson.) Perhaps something that involved all four of his speech classes. They considered purchasing a Pink Ribbon King Cake for each class to enjoy (sold through a New Orleans-based bakery in October and whose sales benefit the Fund,) but decided that it was a bit too pricey for a high school class to have shipped from N.O. to Kingwood, TX. In the end, Mr. Langston left it up to Christa as to what to do. Once she told me about it all, I, of course, wanted to do all I could to assist with this impromptu project. I suggested that the classes have a competition as to who could raise the most money, with the winner getting a Pink Ribbon King Cake party, compliments of The Pink Ribbon Shop. Christa thought that sounded great! Mr. Langston and the other students agreed, and Christa and I set to work on working out the logistics. The contest would run through the end of October (about 3 weeks from start date.) We made slotted tops out of pink cardstock to replace the metal tops of four large mason jars (one for each class period to collect funds in.) Each jar was labeled with the appropriate class period number. I donated our Pink Ribbon Roundup bands and hot pink satin ribbon pins, one of which each student could take whenever they made a donation into the class jar. Christa and Mr. Langston worked together in explaining the project to each class (his other speech classes had not had the opportunity to hear Christa's speech.) In less than 3 weeks time, four high school speech classes had raised $645.43!!! So, so proud of Christa, and amazed at the generosity of these kids (and perhaps their families!) The Pink Ribbon King Cake was delivered to the winning class the following week, and from what I hear, everyone enjoyed it. Love this story. :))))))
Thanks for reading. Much, much more to come, as October was a busy month. Can't put it all down in just one or two blog posts!
Saturday, October 20, 2012
I am no wonder woman!
So much time has passed since updated my blog, I'm sure I'll be leaving some things out. I foolishly thought I would write more frequently, having more to say, once I started back on chemo. What was I thinking?!
I was NOT remembering how crazy the shop is in September & October. And I was not realizing how much having to go for chemo once a week would take from our work time, and out of me. And let's not forget it's football season and Danny is head coach of the KFL Junior Texans, which is like having a 15-20 hour per week part time job on top of his 50+ hour Pink Ribbon Shop workweek ... which means I am responsible for all the other kid-running, appointments, etc. I AM TIRED!!
A little history from the past couple months ...
Like many chemo patients do, we ended up shaving my head once my hair started coming out in handfuls and combfuls. It was so bad that at a windy high school football game one night, I really thought it was going to start blowing away! Once I mentioned it, my David said "If that happens, you can wear my hat." Such a sweetie! My hair didn't blow away under the Friday night lights, but the continual shedding of hair just got to be gross. Everywhere I looked, there was my hair. After the shaving, it was pretty shocking. Even though I had been through it before, and knew what to expect, it was hard seeing myself that way. I looked like an alien. I didn't care for wearing a wig the last time, and this time around I had decided to not waste my time and money getting one. I was planning to "rock the bald look!" But being bald has proved much, much harder this time around. I have surprised myself by not handling it well. At all! Firstly, my head is small. Proportionally too small for my body, I think. Secondly, a few days after the shaving, my scalf developed an itchy, pimply, all-over rash that I couldn't possibly even think of baring in public. I researched the issue online and diagnosed myself with folliculitis, a condition of the hair follicles that can occur with chemotherapy-induced hair loss. My chemo nurse suggested I try some sort of exfoliative action with a washcloth and follow that with a mild moisturizer. That didn't work at all. Next I tried T-Gel therapeutic shampoo made by Neutrogena. This was recommended by some forum writers, and it had evidently worked well for them. T-Gel had an unusual scent that made me smell like I just visited the dog groomer's! And it didn't work at all on my condition. It was time to see a doctor. My new oncologist at the MD Anderson Woodlands, Dr. Coscio, referred me to a MDA dermatologist. Dr. Drucker prescribed Clindamycin solution and another, mousse-like med to apply to my scalp. These have worked really well to clear up my rashy head(!) though not completely. Sometimes I do feel up to "rockin the bald look," but it's still a little outside my comfort zone. I find that if I wear a head wrap/scarf for any length of time, I get a headache. Even with the soft cotton ones. At home, work and in the car I usually go naked-headed. My family doesn't mind, my coworkers understand, and in the car I feel somehow protected behind my sunglasses, as if no one can see my bald head while I'm driving!
Weirdly, I actually have new hair GROWING on my head! It's not good hair ... it's sick chemo hair! Very light and sparse fuzz. (I asked Danny to please tell me if the fuzz is gray, as that would just cause me to lay down and die ... He was quite puzzled as to how that could bother me, considering I'm virtually bald, LOL.) Anyway, some people have commented on the fact that I have hair that's growng, and I gotta admit, it's doggone strange, and I haven't had an explanation for it until I asked Dr. Drucker. The derm doc says it's because the chemo only attacks hair at a particular stage in the growth cycle, and that it actually takes 3 months for the chemo to get it all. I certainly don't remember that from last time. I remember losing ALL my hair, all at once. This time, I've had to shave my legs since starting (though I think that'll be the only time.) And I still have most of my eyebrows and eyelashes, which helps me look less like a cancer patient by being able to wear mascara. Scratch that, it makes me FEEL less like a cancer patient ... no matter what I do, I still LOOK like a cancer patient.
Also, I find myself obsessively shopping online for every head wrap, head scarf, bandana, and chemo hat known to womankind! I've tried several styles and have found a favorite, but I don't feel really good in anything. You just can't hide baldness ... without a wig ... which I am now considering getting. I didn't think it would be this hard! Perhaps my problem dealing with the hair loss is because of the distinct possibility that I will always be on some sort of chemotherapy. That maybe my hair will never get to come back. This chic who was planning to ROCK THE BALD LOOK is no wonder woman after all ...
Speaking of wonder woman, I'm discovering LOTS of ways that I am NOT her. As I mentioned earlier, my life is not able to slow down. Not sure if it's that or the chemo, but probably a combination of all things that are just wearing me out. I am non-stop, early mornings to late nights, almost every day of the week. Sometimes its just too much. I take comfort in the fact that these things will pass. If not, we'd have to hire more people at work and consider cutting back on some of our kids' commitments and activities. It's just a rough time of year. Breast cancer awareness month, football season (youth and high school games) plus chemo equals stress stress stress at both home and work.
Enough for now! Gotta go get ready for tonight's events. Thanks for reading.
Kim
I was NOT remembering how crazy the shop is in September & October. And I was not realizing how much having to go for chemo once a week would take from our work time, and out of me. And let's not forget it's football season and Danny is head coach of the KFL Junior Texans, which is like having a 15-20 hour per week part time job on top of his 50+ hour Pink Ribbon Shop workweek ... which means I am responsible for all the other kid-running, appointments, etc. I AM TIRED!!
A little history from the past couple months ...
Like many chemo patients do, we ended up shaving my head once my hair started coming out in handfuls and combfuls. It was so bad that at a windy high school football game one night, I really thought it was going to start blowing away! Once I mentioned it, my David said "If that happens, you can wear my hat." Such a sweetie! My hair didn't blow away under the Friday night lights, but the continual shedding of hair just got to be gross. Everywhere I looked, there was my hair. After the shaving, it was pretty shocking. Even though I had been through it before, and knew what to expect, it was hard seeing myself that way. I looked like an alien. I didn't care for wearing a wig the last time, and this time around I had decided to not waste my time and money getting one. I was planning to "rock the bald look!" But being bald has proved much, much harder this time around. I have surprised myself by not handling it well. At all! Firstly, my head is small. Proportionally too small for my body, I think. Secondly, a few days after the shaving, my scalf developed an itchy, pimply, all-over rash that I couldn't possibly even think of baring in public. I researched the issue online and diagnosed myself with folliculitis, a condition of the hair follicles that can occur with chemotherapy-induced hair loss. My chemo nurse suggested I try some sort of exfoliative action with a washcloth and follow that with a mild moisturizer. That didn't work at all. Next I tried T-Gel therapeutic shampoo made by Neutrogena. This was recommended by some forum writers, and it had evidently worked well for them. T-Gel had an unusual scent that made me smell like I just visited the dog groomer's! And it didn't work at all on my condition. It was time to see a doctor. My new oncologist at the MD Anderson Woodlands, Dr. Coscio, referred me to a MDA dermatologist. Dr. Drucker prescribed Clindamycin solution and another, mousse-like med to apply to my scalp. These have worked really well to clear up my rashy head(!) though not completely. Sometimes I do feel up to "rockin the bald look," but it's still a little outside my comfort zone. I find that if I wear a head wrap/scarf for any length of time, I get a headache. Even with the soft cotton ones. At home, work and in the car I usually go naked-headed. My family doesn't mind, my coworkers understand, and in the car I feel somehow protected behind my sunglasses, as if no one can see my bald head while I'm driving!
Weirdly, I actually have new hair GROWING on my head! It's not good hair ... it's sick chemo hair! Very light and sparse fuzz. (I asked Danny to please tell me if the fuzz is gray, as that would just cause me to lay down and die ... He was quite puzzled as to how that could bother me, considering I'm virtually bald, LOL.) Anyway, some people have commented on the fact that I have hair that's growng, and I gotta admit, it's doggone strange, and I haven't had an explanation for it until I asked Dr. Drucker. The derm doc says it's because the chemo only attacks hair at a particular stage in the growth cycle, and that it actually takes 3 months for the chemo to get it all. I certainly don't remember that from last time. I remember losing ALL my hair, all at once. This time, I've had to shave my legs since starting (though I think that'll be the only time.) And I still have most of my eyebrows and eyelashes, which helps me look less like a cancer patient by being able to wear mascara. Scratch that, it makes me FEEL less like a cancer patient ... no matter what I do, I still LOOK like a cancer patient.
Also, I find myself obsessively shopping online for every head wrap, head scarf, bandana, and chemo hat known to womankind! I've tried several styles and have found a favorite, but I don't feel really good in anything. You just can't hide baldness ... without a wig ... which I am now considering getting. I didn't think it would be this hard! Perhaps my problem dealing with the hair loss is because of the distinct possibility that I will always be on some sort of chemotherapy. That maybe my hair will never get to come back. This chic who was planning to ROCK THE BALD LOOK is no wonder woman after all ...
Speaking of wonder woman, I'm discovering LOTS of ways that I am NOT her. As I mentioned earlier, my life is not able to slow down. Not sure if it's that or the chemo, but probably a combination of all things that are just wearing me out. I am non-stop, early mornings to late nights, almost every day of the week. Sometimes its just too much. I take comfort in the fact that these things will pass. If not, we'd have to hire more people at work and consider cutting back on some of our kids' commitments and activities. It's just a rough time of year. Breast cancer awareness month, football season (youth and high school games) plus chemo equals stress stress stress at both home and work.
Enough for now! Gotta go get ready for tonight's events. Thanks for reading.
Kim
Thursday, September 6, 2012
Quick update
Today I received my 3rd dose of Abraxane...
First, the positives: it is not causing nausea or vomiting, or even a decrease in my appetite (darn it on that one!), I am healing up and feeling less sore from my port placement surgery that I had last week, I seem to be able to do much of what I usually do (drive kids places, sit and work at my desk, drive kids to more places, etc,) I've got a great group of ladies bringing our family dinner on chemo days, and wonderful friends & family who care about me and let me know it!
Next, the not-so-bads: I still have my hair, but it is barely holding on and will probably go away completely very soon. I do experience aches, pains & tiredness on about days 2-5 post infusion. I have to learn to take it easy on those days and just "go with the flow." It's hard for me ... I'm not one to slow down much. I tend to start feeling sorry for myself when I'm stuck at home and trying to rest.
Lastly, the negatives: My hair is on its way out. I haven't had time, and won't have time, to get with a photographer for a nice family portrait before my hair is gone. I know this sounds petty, but I was really hoping to do this. I fear that I'll never have hair again. I guess in the big scheme of things, it's not that bad. We did get some really great snapshots on our Colorado vacation in June.
I am sure that if I had written this post over this past weekend, some of my not-so-bads would have appeared in my negatives. But since I am feeling pretty good NOW, my outlook is a little rosier!
Will write in more detail about things when I have more time -- just wanted to give a quick update!
Thanks for reading!
First, the positives: it is not causing nausea or vomiting, or even a decrease in my appetite (darn it on that one!), I am healing up and feeling less sore from my port placement surgery that I had last week, I seem to be able to do much of what I usually do (drive kids places, sit and work at my desk, drive kids to more places, etc,) I've got a great group of ladies bringing our family dinner on chemo days, and wonderful friends & family who care about me and let me know it!
Next, the not-so-bads: I still have my hair, but it is barely holding on and will probably go away completely very soon. I do experience aches, pains & tiredness on about days 2-5 post infusion. I have to learn to take it easy on those days and just "go with the flow." It's hard for me ... I'm not one to slow down much. I tend to start feeling sorry for myself when I'm stuck at home and trying to rest.
Lastly, the negatives: My hair is on its way out. I haven't had time, and won't have time, to get with a photographer for a nice family portrait before my hair is gone. I know this sounds petty, but I was really hoping to do this. I fear that I'll never have hair again. I guess in the big scheme of things, it's not that bad. We did get some really great snapshots on our Colorado vacation in June.
I am sure that if I had written this post over this past weekend, some of my not-so-bads would have appeared in my negatives. But since I am feeling pretty good NOW, my outlook is a little rosier!
Will write in more detail about things when I have more time -- just wanted to give a quick update!
Thanks for reading!
Thursday, August 16, 2012
Coming up ... big baldy
It's been a crazy busy summer, as usual. The kids all went to Camp Lone Star, Christa flew to N.O. for a week (by herself!) and went to a Lutheran high school youth gathering, we had an awesome family vacation to the Rocky Mountains, Danny & I took a nice trip to the Austin area (just the 2 of us, including a zip line adventure over Lake Travis!), The Pink Ribbon Shop Fund for Breast Cancer Research is rockin', Bethany's been playing drums with our praise team for Sunday services, and David's football season is in full swing! Just how I like it, stressful and full! Lol.
Lots to say today ... lotta news to share ...
Before our Colorado trip in June, Danny and I started walking the neighborhood a few nights a week. Trying to prepare for the hiking that we usually do on our vacations. Since being taken off of Xeloda in April, my hands and feet had gradually healed up and had been feeling MUCH better! Good enough to walk for exercise and maybe even do some jogging. I decided that I would try to train for a half marathon again. I did it four years ago (part jogging, part walking) and amazed myself by completing it and really getting into shape (and yes, this was AFTER my stage IV cancer diagnosis.) Loved that feeling! Wanted to get that body back, and those good feelings. I committed myself to v-e-r-y s-l-o-w-l-y transitioning from brisk walking to jogging over the course of several weeks. First walking the whole time, for a few weeks. Then one minute jogging, 5 minutes walking, for 2 weeks. Then 2 minutes jogging, 4 minutes walking, for 2 weeks. And so forth. Everything was going as planned. I joined Kingwood Fit again to give me a training schedule and motivation to continue training. Even encouraged my daughter Bethany (age 13) and my friend Ashley to join with me! When I first restarted back at walking/jogging, I had some concern about my left femur. I had had a stress fracture there 3 years ago, and that leg was painful for many many months afterwards, even a year later when I tried to start jogging again. It was what eventually made me give up trying to run altogether ... then of course my cancer started acting up and my meds changed to Xeloda, and my hands and feet were too painful to exercise at all ... sigh. But now the leg felt fine! Great, in fact. No pain. From the way I saw things, I was on my way to another successful season of half-marathon training. Kingwood Fit's Saturday morning "long" runs were just getting started.
But, alas, it was not meant to be. After it was determined that the Xeloda I was taking was no longer effective on my cancer, Dr. Green had put me back on anti-hormone therapy in April. Zoladex and Tamoxifen. She said that sometimes going back to hormone therapy that's worked in the past works again. Last Monday I had my CT scans, chest x-ray, and blood work done to see if this med change had worked or not. Clearly it had not. I have a moderate amount of fluid around my left lung again. They saw a new area of metastasis on my lumbar spine. And a 1.7cm enlarged lymph node in my abdomen, near my kidney. With her stethoscope, Dr. Green could hear no air movement in the lower portion of my left lung. My worst fears were realized: my cancer was growing again and I was going to have to have chemotherapy.
And yet, I wasn't totally shocked. A punch in the gut, yes. But I had had some mental preparation for this news. Before this week, I had gone on about 4 Saturday "long" runs with Kingwood Fit. I'm in the 5-and-1 group, meaning we run 5 minutes, walk 1 minute, for the duration of however long the run is. And our 5 minute "run" is at a really slow pace! (hey, it's all about finishing, not speed!) The first week's run in mid-July was 3 miles long. I was unable to keep up. I fell behind, pace-wise, and couldn't keep up with the 5-and-1 plan. This was going to be rough! I remember the first time I trained for a half-marathon, it was very very hard. I really had to push myself, because I had never been a runner before. Ever! Here I am, 4 years later, 4 years older. I can do this! I did my during-the-week training runs (25-35 mins, 3 nights per week) and that was tough, too. Four weeks into it, I had yet to be able to stick it out for the entire Saturday run. I felt that I just couldn't go on running. Had to walk some. Needed a break. I felt, at times, that I couldn't get a good deep breath in. In the back of my mind, I wondered if something was going on. Something cancer related. Another part of me was saying, Kim, don't be so paranoid. You always think your aches and pains are cancer related! You've just got to do it. Be diligent in your during-the-week runs, and run the whole 5 minutes. Don't walk for more than 1 minute in between. C'mon, you can do this! Get your lazy old-lady butt in gear. I prayed, asked God for strength. But admittedly, it wasn't going well. I didn't seem to be making progress on my endurance. I wasn't seeing improvement in my stamina. Now we know why! Having one lung surrounded with a bunch of fluid is definitely not conducive to half-marathon training!!
This is kinda sick, but it actually feels good to know that I'm not just getting old and totally out of shape, and I'm not a pathetic loser who can't hack a little running! I mean, plenty of people older than, rounder than, and seemingly more out of shape than I are doing just fine with Kingwood Fit's training program! I've got me the ultimate excuse for not being able to keep up! Yea that's pretty sick, Kim. twisted.
Anyways ... The other clue I had that something was going on was that I've been failing my "lung test." It's a totally subjective way that I can tell that something's going on in my lung. Weird, I know! In 2006, when I was initially diagnosed with stage IV breast cancer, I had a moderately severe left pleural effusion. Before I even knew what was wrong, I remember lying in bed, on my right side, and being unable to take a big deep breath in. Seeing the CT scan pictures, it was easy to see that my left lung was being squeezed down to less than half its normal size. After a couple of months being on hormone therapy (my first treatment for stage IV breast cancer at MD Anderson,) I was able to take that deep breath with no difficulty. Subsequent scans showed that the pleural effusion had completely resolved. Ever since then, often times when I lay on my right side, I take in a deep breath and sort of grade my ability to do so. It's been fine for years ... but lately it hasn't been consistently good. Seems to depend on my position.
And lastly, my lower back's been hurting me for the past few weeks. Aleve has worked wonders, so I really thought it was a muscle pull or something like that. I've been thinking that it's possibly because of my running ... and I'm not getting any younger. So to find out that I had a new metastatic lesion on my lower spine, well, it explains my discomfort.
Dr. Green says I can continue running as long as I feel up to it. She thinks I'll probably feel better once I get in a few doses of my new chemo drug, Abraxane. I hope so, because that will mean that it's working, and that the lung fluid is clearing up! I will try to continue jogging, but I'm going to give up the half marathon training for now. I've got a lot of healing work ahead of me!
Next Thursday 8/24/12 I will get my first Abraxane infusion. I will receive one dose per week, intravenously. Three weeks on, one week off. The following week, I will have a port placed in my chest, to allow IV access in a large, central vein, because chemo is very toxic to the smaller, peripheral veins in the arms and hands. This will be an outpatient surgical procedure. Yuck to any kind of surgery!! But you gotta do what you gotta do. And even though MD Anderson is less than an hour's drive from us, I am still thankful that they now have a satellite campus in The Woodlands where I can get my chemo infusions. It's about the same distance from home, but it's a much nicer drive through country-like highways with hardly any traffic. A trip to MDA's main campus is via a huge 70 mph freeway right through downtown Houston, usually in the early morning rush hour. So the drive will be better and less stressful ... maybe even "nice"!
Also, Dr. Green says that Abraxane is generally "well tolerated." It doesn't tend to make patients sick, although a small percentage of patients do get nauseated. I am usually prone to nausea, but hopefully I will NOT be in that number! She gave me a prescription for Zofran, just in case. However, I will lose my hair. It's been 12 years since I was bald from chemo! Its not the act of losing my hair that bothers me. It's having the big bald head that screams out "I have cancer!" everywhere I go that bothers me. I never try to keep my cancer a secret, but I do like not having it so evident. When you're bald, there's no keeping your cancer from casual acquaintances. And the looks you get when you're bald. Mostly sympathetic. People mean well, I know that. It's such an ABnormal look for a woman, that people can't help but look. But I'll get over it. In fact, I'm planning to "rock the bald look" as my daughter Shea said. I hated my wig, and I don't even want one this time. It was hot, itchy, and didn't look good. Well, I never felt good in it, the few times I wore it. I'll stick with hats and wraps this time, thank you very much.
I'll have the usual chemo-induced risk of infection while I'm on Abraxane. Fingers crossed that I will stay infection-free! And lastly, long term use can cause neuropathy (numbness & tingling) in the hands and feet. Not sure how I feel about that (well yes, I do know that it sucks!) ... because if she keeps me on it for some time, it will mean that it's working, which is a good thing.
Which leads me to my last topic ...
Everyone who I've told about my latest developments inevitably asks "How long will you have to be on it?" I know it's commonly known that cancer patients get chemo for a prescribed amount of time and then their treatment is "over." That's how it was during my first chemo treatment 12 years ago. After I had my mastectomy, I had 8 rounds of chemo, then 5 weeks of radiation. Then I was DONE. Except for moving on to 5 years of Tamoxifen (oral treatment.) But with stage IV cancer treatment, it's different. It's a constant battle to keep the cancer at bay, because there is no cure for cancer! Some drugs work, and some don't. When we find one that works, I'll stay on that until it stops working. Then move on to another drug and see how it does. The option of stopping treatment with stage IV cancer is simply not an option. You stop treatment, and the cancer grows again. It's just so discouraging that I am to the point of needing harsh chemotherapy again. I know, I know, I have already beaten a lot of odds that I'm still here after 12 years, and 6 of those years with stage IV. I am thankful for that. VERY thankful! But that doesn't make this current turn of events any easier. It feels like it's the beginning of the end. I could have another 5 years, who knows! I am again reminded of my friend Eveline. She was bald from chemo when I met her, and she stayed hairless for the remaining 5 years of her life, enduring chemo drug after chemo drug, until she finally left the earth to be with Jesus.
Planning on trudging on, continuing to do my regular things, for as long as I possibly can. Like the Energizer bunny! Fightin' the big C (cancer,) with an even bigger C (Jesus Christ)!
Thanks for reading!
Kim
Lots to say today ... lotta news to share ...
Before our Colorado trip in June, Danny and I started walking the neighborhood a few nights a week. Trying to prepare for the hiking that we usually do on our vacations. Since being taken off of Xeloda in April, my hands and feet had gradually healed up and had been feeling MUCH better! Good enough to walk for exercise and maybe even do some jogging. I decided that I would try to train for a half marathon again. I did it four years ago (part jogging, part walking) and amazed myself by completing it and really getting into shape (and yes, this was AFTER my stage IV cancer diagnosis.) Loved that feeling! Wanted to get that body back, and those good feelings. I committed myself to v-e-r-y s-l-o-w-l-y transitioning from brisk walking to jogging over the course of several weeks. First walking the whole time, for a few weeks. Then one minute jogging, 5 minutes walking, for 2 weeks. Then 2 minutes jogging, 4 minutes walking, for 2 weeks. And so forth. Everything was going as planned. I joined Kingwood Fit again to give me a training schedule and motivation to continue training. Even encouraged my daughter Bethany (age 13) and my friend Ashley to join with me! When I first restarted back at walking/jogging, I had some concern about my left femur. I had had a stress fracture there 3 years ago, and that leg was painful for many many months afterwards, even a year later when I tried to start jogging again. It was what eventually made me give up trying to run altogether ... then of course my cancer started acting up and my meds changed to Xeloda, and my hands and feet were too painful to exercise at all ... sigh. But now the leg felt fine! Great, in fact. No pain. From the way I saw things, I was on my way to another successful season of half-marathon training. Kingwood Fit's Saturday morning "long" runs were just getting started.
But, alas, it was not meant to be. After it was determined that the Xeloda I was taking was no longer effective on my cancer, Dr. Green had put me back on anti-hormone therapy in April. Zoladex and Tamoxifen. She said that sometimes going back to hormone therapy that's worked in the past works again. Last Monday I had my CT scans, chest x-ray, and blood work done to see if this med change had worked or not. Clearly it had not. I have a moderate amount of fluid around my left lung again. They saw a new area of metastasis on my lumbar spine. And a 1.7cm enlarged lymph node in my abdomen, near my kidney. With her stethoscope, Dr. Green could hear no air movement in the lower portion of my left lung. My worst fears were realized: my cancer was growing again and I was going to have to have chemotherapy.
And yet, I wasn't totally shocked. A punch in the gut, yes. But I had had some mental preparation for this news. Before this week, I had gone on about 4 Saturday "long" runs with Kingwood Fit. I'm in the 5-and-1 group, meaning we run 5 minutes, walk 1 minute, for the duration of however long the run is. And our 5 minute "run" is at a really slow pace! (hey, it's all about finishing, not speed!) The first week's run in mid-July was 3 miles long. I was unable to keep up. I fell behind, pace-wise, and couldn't keep up with the 5-and-1 plan. This was going to be rough! I remember the first time I trained for a half-marathon, it was very very hard. I really had to push myself, because I had never been a runner before. Ever! Here I am, 4 years later, 4 years older. I can do this! I did my during-the-week training runs (25-35 mins, 3 nights per week) and that was tough, too. Four weeks into it, I had yet to be able to stick it out for the entire Saturday run. I felt that I just couldn't go on running. Had to walk some. Needed a break. I felt, at times, that I couldn't get a good deep breath in. In the back of my mind, I wondered if something was going on. Something cancer related. Another part of me was saying, Kim, don't be so paranoid. You always think your aches and pains are cancer related! You've just got to do it. Be diligent in your during-the-week runs, and run the whole 5 minutes. Don't walk for more than 1 minute in between. C'mon, you can do this! Get your lazy old-lady butt in gear. I prayed, asked God for strength. But admittedly, it wasn't going well. I didn't seem to be making progress on my endurance. I wasn't seeing improvement in my stamina. Now we know why! Having one lung surrounded with a bunch of fluid is definitely not conducive to half-marathon training!!
This is kinda sick, but it actually feels good to know that I'm not just getting old and totally out of shape, and I'm not a pathetic loser who can't hack a little running! I mean, plenty of people older than, rounder than, and seemingly more out of shape than I are doing just fine with Kingwood Fit's training program! I've got me the ultimate excuse for not being able to keep up! Yea that's pretty sick, Kim. twisted.
Anyways ... The other clue I had that something was going on was that I've been failing my "lung test." It's a totally subjective way that I can tell that something's going on in my lung. Weird, I know! In 2006, when I was initially diagnosed with stage IV breast cancer, I had a moderately severe left pleural effusion. Before I even knew what was wrong, I remember lying in bed, on my right side, and being unable to take a big deep breath in. Seeing the CT scan pictures, it was easy to see that my left lung was being squeezed down to less than half its normal size. After a couple of months being on hormone therapy (my first treatment for stage IV breast cancer at MD Anderson,) I was able to take that deep breath with no difficulty. Subsequent scans showed that the pleural effusion had completely resolved. Ever since then, often times when I lay on my right side, I take in a deep breath and sort of grade my ability to do so. It's been fine for years ... but lately it hasn't been consistently good. Seems to depend on my position.
And lastly, my lower back's been hurting me for the past few weeks. Aleve has worked wonders, so I really thought it was a muscle pull or something like that. I've been thinking that it's possibly because of my running ... and I'm not getting any younger. So to find out that I had a new metastatic lesion on my lower spine, well, it explains my discomfort.
Dr. Green says I can continue running as long as I feel up to it. She thinks I'll probably feel better once I get in a few doses of my new chemo drug, Abraxane. I hope so, because that will mean that it's working, and that the lung fluid is clearing up! I will try to continue jogging, but I'm going to give up the half marathon training for now. I've got a lot of healing work ahead of me!
Next Thursday 8/24/12 I will get my first Abraxane infusion. I will receive one dose per week, intravenously. Three weeks on, one week off. The following week, I will have a port placed in my chest, to allow IV access in a large, central vein, because chemo is very toxic to the smaller, peripheral veins in the arms and hands. This will be an outpatient surgical procedure. Yuck to any kind of surgery!! But you gotta do what you gotta do. And even though MD Anderson is less than an hour's drive from us, I am still thankful that they now have a satellite campus in The Woodlands where I can get my chemo infusions. It's about the same distance from home, but it's a much nicer drive through country-like highways with hardly any traffic. A trip to MDA's main campus is via a huge 70 mph freeway right through downtown Houston, usually in the early morning rush hour. So the drive will be better and less stressful ... maybe even "nice"!
Also, Dr. Green says that Abraxane is generally "well tolerated." It doesn't tend to make patients sick, although a small percentage of patients do get nauseated. I am usually prone to nausea, but hopefully I will NOT be in that number! She gave me a prescription for Zofran, just in case. However, I will lose my hair. It's been 12 years since I was bald from chemo! Its not the act of losing my hair that bothers me. It's having the big bald head that screams out "I have cancer!" everywhere I go that bothers me. I never try to keep my cancer a secret, but I do like not having it so evident. When you're bald, there's no keeping your cancer from casual acquaintances. And the looks you get when you're bald. Mostly sympathetic. People mean well, I know that. It's such an ABnormal look for a woman, that people can't help but look. But I'll get over it. In fact, I'm planning to "rock the bald look" as my daughter Shea said. I hated my wig, and I don't even want one this time. It was hot, itchy, and didn't look good. Well, I never felt good in it, the few times I wore it. I'll stick with hats and wraps this time, thank you very much.
I'll have the usual chemo-induced risk of infection while I'm on Abraxane. Fingers crossed that I will stay infection-free! And lastly, long term use can cause neuropathy (numbness & tingling) in the hands and feet. Not sure how I feel about that (well yes, I do know that it sucks!) ... because if she keeps me on it for some time, it will mean that it's working, which is a good thing.
Which leads me to my last topic ...
Everyone who I've told about my latest developments inevitably asks "How long will you have to be on it?" I know it's commonly known that cancer patients get chemo for a prescribed amount of time and then their treatment is "over." That's how it was during my first chemo treatment 12 years ago. After I had my mastectomy, I had 8 rounds of chemo, then 5 weeks of radiation. Then I was DONE. Except for moving on to 5 years of Tamoxifen (oral treatment.) But with stage IV cancer treatment, it's different. It's a constant battle to keep the cancer at bay, because there is no cure for cancer! Some drugs work, and some don't. When we find one that works, I'll stay on that until it stops working. Then move on to another drug and see how it does. The option of stopping treatment with stage IV cancer is simply not an option. You stop treatment, and the cancer grows again. It's just so discouraging that I am to the point of needing harsh chemotherapy again. I know, I know, I have already beaten a lot of odds that I'm still here after 12 years, and 6 of those years with stage IV. I am thankful for that. VERY thankful! But that doesn't make this current turn of events any easier. It feels like it's the beginning of the end. I could have another 5 years, who knows! I am again reminded of my friend Eveline. She was bald from chemo when I met her, and she stayed hairless for the remaining 5 years of her life, enduring chemo drug after chemo drug, until she finally left the earth to be with Jesus.
Planning on trudging on, continuing to do my regular things, for as long as I possibly can. Like the Energizer bunny! Fightin' the big C (cancer,) with an even bigger C (Jesus Christ)!
Thanks for reading!
Kim
Monday, May 21, 2012
Exciting news @ The Pink Ribbon Shop!
Today is our "official" announcement about The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson! If you didn't get our promotional email, here's what was said:
What does this mean to ME?! So much!! I am hoping that having our Fund in place opens up a new world of possibilities for fundraising at The Pink Ribbon Shop. I see local benefit events in our future. I see manufacturers and suppliers creating pink ribbon products that benefit the Fund. I see big corporations and organizations turning to The Pink Ribbon Shop Fund for Breast Cancer Research as a great place to donate. I see individuals and businesses who are fed up with the current "big girls" in the breast cancer fundraising arena wanting to redirect their contributions to a more efficiently run establishment ... where their money goes right to breast cancer research activities and not some other questionable, potentially non-cancer-related activities.
If you think about it, just what is the pink ribbon campaign all about? It's about awareness, sure. In this day and age, you'd have to live in a box to not be "aware" of breast cancer! It's also about education. Everyone knows that breast cancer exists, but do they know about the importance of regular breast self exams and mammograms? And lastly, and I think most importantly, it's about funding research so a cure can be found. Let's face it, people! A cure for breast cancer would mean the end of the pink ribbon campaign, and that couldn't make me happier!
So happy that my Pink Ribbon Shop is FUNDING THE CURE ...
One pink ribbon at a time! Woohoo!
EXCITING NEWS from The Pink Ribbon Shop!
I’ve mentioned our “partnership” with MD Anderson Cancer Center for several months now on my blog, but I’ve disclosed no details. We’ve added our new $1.00 Funding the Cure with THE PINK RIBBON ROUNDUP silicone bracelet to our website with no special fanfare. And we’ve created The Pink Ribbon Roundup donation page on our site as well. Now it’s time to officially announce how all these pieces fit together!
Established in 2011, The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson Cancer Center was founded by The Pink Ribbon Shop to demonstrate our commitment to funding breast cancer research efforts. While we regularly donated to various organizations throughout any given year, we felt that we could make an even bigger impact by focusing on a single recipient. We are proud to support the University of Texas MD Anderson Cancer Center, the nation's leading cancer center, with a commitment to donate a minimum of $20,000 in any four year period to their breast cancer research department. We are excited to report that in our Fund’s first 6 months, we have exceeded our own expectations by donating $10,000!
Your purchase of our exclusive pink ribbon "Funding the Cure with THE PINK RIBBON ROUNDUP" silicone wristbands allows us to donate the FULL PURCHASE PRICE of $1.00 each to The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson Cancer Center! Monetary donations made on our Pink Ribbon Roundup page or our MD Anderson myGiving page are immediately directed to our Fund. All monies in the Fund have been specifically designated for MD Anderson’s breast cancer research department. Nowhere else! There are no administrative costs or other fees deducted from your donation. One hundred percent of the bracelet’s proceeds and 100% of monetary donations received goes toward breast cancer research activities at MD Anderson!
We’ve dubbed this whole bundle of good stuff The Pink Ribbon Roundup. We are rounding up funds, Texas style, so a cure can be found! With YOUR support of The Pink Ribbon Roundup program, The Pink Ribbon Shop is FUNDING THE CURE, one pink ribbon at a time, and helping MD Anderson Cancer Center make cancer history®!
WHAT DOES THIS MEAN TO YOU, OUR CUSTOMERS?
The Pink Ribbon Shop has always been up front about how much and to whom we donate. We believe that we have a responsibility to our customers to be good stewards with what we take in as a business. After years of hodge-podge, irregular giving to whomever we felt called to (all worthy causes, of course,) we were motivated to identify our true philanthropic mission. That mission is FUNDING THE CURE by supporting breast cancer research efforts. The establishment of The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson Cancer Center is simply a new approach to our charitable giving. We also like to think of it as a way to multiply our company’s donations. By allowing our customers to actively participate in our Pink Ribbon Roundup program, we can contribute even more toward finding a cure for breast cancer! And you will have the peace of mind of knowing exactly how your donation or purchase will be utilized.
So please keep us in mind for your breast cancer fundraiser events!· At $1.00 each, our Funding the Cure silicone bracelet bands are quite a bargain AND your entire dollar is a donation!
· Donate to The Pink Ribbon Shop Fund for Breast Cancer Research. Whether purchasing a bracelet or donating through The Pink Ribbon Roundup page or our myGiving MD Anderson page, your donation ONLY goes to breast cancer research!
What does this mean to ME?! So much!! I am hoping that having our Fund in place opens up a new world of possibilities for fundraising at The Pink Ribbon Shop. I see local benefit events in our future. I see manufacturers and suppliers creating pink ribbon products that benefit the Fund. I see big corporations and organizations turning to The Pink Ribbon Shop Fund for Breast Cancer Research as a great place to donate. I see individuals and businesses who are fed up with the current "big girls" in the breast cancer fundraising arena wanting to redirect their contributions to a more efficiently run establishment ... where their money goes right to breast cancer research activities and not some other questionable, potentially non-cancer-related activities.
If you think about it, just what is the pink ribbon campaign all about? It's about awareness, sure. In this day and age, you'd have to live in a box to not be "aware" of breast cancer! It's also about education. Everyone knows that breast cancer exists, but do they know about the importance of regular breast self exams and mammograms? And lastly, and I think most importantly, it's about funding research so a cure can be found. Let's face it, people! A cure for breast cancer would mean the end of the pink ribbon campaign, and that couldn't make me happier!
So happy that my Pink Ribbon Shop is FUNDING THE CURE ...
One pink ribbon at a time! Woohoo!
Tuesday, May 1, 2012
Slow growing cancer ... Yay?!?
A couple of weeks ago, I visited MD Anderson for my 3 month check. Good news and bad news. CT scans showed minimal growth of tumors. However, the radiologist also looked back to 6 months ago and 9 months ago and even a year ago, and discovered that over the course of a year's time, the cancer in my lung, bones and liver is slowly but steadily progressing and growing. That's the bad news! The good news, which I have become pretty good at identifying and placing my hope in, no matter how small, is that I'm being taken off of Xeloda! If you've followed my blog, you know that I've been taking Xeloda for the past year and a half and I've absolutely HATED it!! I've been wishing to get off ... well part of me has been wishing that. Obviously the reason is not a good thing! I am fully aware that for Dr. Green to discontinue it, it's only because it's no longer working on my cancer. Still, Xeloda has really limited me in many ways. Such mixed feelings! Should I BE this happy?? How twisted is this?
So what's next?? Dr. Green has said in the past that after Xeloda, the next move would be to a harsher chemo drug, Abraxane (think hair loss, nausea, etc.) However, she is now recommending I move back to (anti)hormone therapy instead. The way she described it, since chemo usually works best on fast-growing cells, perhaps that's not the best treatment for my cancer at this time, since it appears to be growing very slowly. I had good results from anti-hormone tx in the past, and for long periods of time (6 years on Tamoxifen, 3 years on Femara.) She mentioned previously that revisiting those kinds of drugs may be an option at some point. Now is the time! She is putting me back on Tamoxifen and Zolodex. Yayyyy, no more Xeloda! No more sore/tender hands and feet! No more kids toothpaste and bland-tasting food! No more needing assistance/tools to open cans and jars! Perhaps I can start exercising again! Hoping for quick and complete end to Xeloda's side effects! And there's more ... not sure if I mentioned the nasty, heavy, & long-lasting periods I've been having since my cycles returned after stopping Zolodex 1 1/2 years ago. Now I'm back on Zolodex, so hello menopause (again!)
Seriously, I am one messed up girl!!! Who gets excited about menopause??
Also hoping that menopause doesn't bring with it the issues with "intimacy" that plagued me and Danny's relationship for over a year ... sighhhhh..........
Here's some actual good news on my cancer front: my genetic testing (BRCA-1 & 2) came back NEGATIVE! Good news for my sister, mom, & 3 girls!
So much going on here ... the ups and downs ... the rollercoaster that is being a stage IV breast cancer fighter! Please people, support research efforts and find a cure for breast cancer! Soon!!!
So what's next?? Dr. Green has said in the past that after Xeloda, the next move would be to a harsher chemo drug, Abraxane (think hair loss, nausea, etc.) However, she is now recommending I move back to (anti)hormone therapy instead. The way she described it, since chemo usually works best on fast-growing cells, perhaps that's not the best treatment for my cancer at this time, since it appears to be growing very slowly. I had good results from anti-hormone tx in the past, and for long periods of time (6 years on Tamoxifen, 3 years on Femara.) She mentioned previously that revisiting those kinds of drugs may be an option at some point. Now is the time! She is putting me back on Tamoxifen and Zolodex. Yayyyy, no more Xeloda! No more sore/tender hands and feet! No more kids toothpaste and bland-tasting food! No more needing assistance/tools to open cans and jars! Perhaps I can start exercising again! Hoping for quick and complete end to Xeloda's side effects! And there's more ... not sure if I mentioned the nasty, heavy, & long-lasting periods I've been having since my cycles returned after stopping Zolodex 1 1/2 years ago. Now I'm back on Zolodex, so hello menopause (again!)
Seriously, I am one messed up girl!!! Who gets excited about menopause??
Also hoping that menopause doesn't bring with it the issues with "intimacy" that plagued me and Danny's relationship for over a year ... sighhhhh..........
Here's some actual good news on my cancer front: my genetic testing (BRCA-1 & 2) came back NEGATIVE! Good news for my sister, mom, & 3 girls!
So much going on here ... the ups and downs ... the rollercoaster that is being a stage IV breast cancer fighter! Please people, support research efforts and find a cure for breast cancer! Soon!!!
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