I'm sitting in the chemo chair and can't believe that I'm almost done with the chemotherapy drugs. Next Tuesday will be my last dose of Taxol. I'll still be getting herceptin (a targeted therapy but not chemo) every Tuesday until my surgery. But, that drug is very easy on me. No tingling in my fingers and toes with that one!
Wow... I'm ready for my hair growth to kick into high gear. :)
I hope everyone had a wonderful Christmas and may 2010 bring health and happiness to all.
Tuesday, December 29, 2009
Tuesday, December 15, 2009
Last week's appointment with the plastic surgeon...
Last Tuesday was busy. We left chemo and went to Chapel Hill for my appointment with Dr. Halvorson. The appointment was over three hours long! We met with the nurse first to discuss options. I advised her that I wanted a skin saving technique to be used and hoped to have implants put in immediately, if possible. After examining me, Dr. Halvorson said I was a candidate for immediate reconstruction. But, the incision I wanted (upside down T, lollipop) wasn't recommended. The chance for necrosis (cell death) of the skin was higher with that incision. Plus, since I can't keep my nipple, the lollipop (circle) part of the incision would be hard to close... The situation would be different if I could keep my nipple.
He described an incision that was less invasive (basically a oval/eye shaped) incision around the nipple. When sewn shut, the scar would be a straight line across my breast... But angled so the scar would be high towards my shoulders and low towards the center of my body. Kind of like this: \ /
This incision is better for bathing suits, etc.
He said that he would draw the lines for the general surgeon to cut... They will work back to back in the operating room.
I hope to have implants put in immediately. However, he did say that I may end up with expanders depending on my status after Dr. Demore has completed the bilateral mastectomy. As much as I want a one-step process (I don't want two surgeries!), I trust that he will do what is best.
That's all for now since I'm getting chemo and it takes a while to type on my iPhone...
He described an incision that was less invasive (basically a oval/eye shaped) incision around the nipple. When sewn shut, the scar would be a straight line across my breast... But angled so the scar would be high towards my shoulders and low towards the center of my body. Kind of like this: \ /
This incision is better for bathing suits, etc.
He said that he would draw the lines for the general surgeon to cut... They will work back to back in the operating room.
I hope to have implants put in immediately. However, he did say that I may end up with expanders depending on my status after Dr. Demore has completed the bilateral mastectomy. As much as I want a one-step process (I don't want two surgeries!), I trust that he will do what is best.
That's all for now since I'm getting chemo and it takes a while to type on my iPhone...
Tuesday, December 8, 2009
White blood count...
My labs were done yesterday and I am happy to report that my white blood count is 1.6! That number isn't great but it went up instead of down which means I am able to get chemo today. I'm actually sitting in the chemo chair right now.
I was the first patient in the chemo room... My appointment was at 7:30am so I can get to Chapel Hill in time for an appointment with the plastic surgeon at 1pm... I'm hoping to get out of here at 11. Chemo always takes so long!!
More later! :)
I was the first patient in the chemo room... My appointment was at 7:30am so I can get to Chapel Hill in time for an appointment with the plastic surgeon at 1pm... I'm hoping to get out of here at 11. Chemo always takes so long!!
More later! :)
Thursday, December 3, 2009
Just got a call from the clinical trial coordinator...
Cindy Shaw, the clinical trial coordinator, wanted to give me a heads up that they are hoping that my Neutrophil (a component of my white blood cells that fight infection) count goes back up before the next treatment. My labs showed that my count dropped down to 1.3 from 2.1 the previous week. And, the study dictates that I need a count of 1.2 or greater to get treatment.
They need to follow these guidelines to protect me... so, I can continue to fight bacteria/microorganisms and not get life-threatening infections.
There is nothing I can do (like taking a vitamin) to make these numbers go up. She suggested that I rest when I can. I told her that on Tuesday night I didn't get ONE minute of sleep. That can't be good for my Neutrophil count!!
Now... when can I schedule in some naps with this busy schedule of mine? (I just looked at my calendar for this weekend... Regan is in a Christmas parade, Aidan's going to a birthday birthday party and has basketball game and practice, and we have fun evening plans for Saturday night. To top it off, Christmas is 22 days a way, and I wanted to get the tree and decorate this weekend. I have done nothing... No decorating or shopping... to prepare yet!! Yikes!)
Here's some information about Neutrophil:
Neutrophil - Type of White Blood Cell (WBC)
Definition: A type of white blood cell (WBC) filled with microscopic sacs (granules) containing enzymes that digest bacteria and other microorganisms. This process is known as phagocytosis.
Neutrophils surround "intruders" in your blood and "eat" them, thereby destroying potential infections. These white blood cells are a very important part of your immune system. Neutrophils are produced in the bone marrow.
They need to follow these guidelines to protect me... so, I can continue to fight bacteria/microorganisms and not get life-threatening infections.
There is nothing I can do (like taking a vitamin) to make these numbers go up. She suggested that I rest when I can. I told her that on Tuesday night I didn't get ONE minute of sleep. That can't be good for my Neutrophil count!!
Now... when can I schedule in some naps with this busy schedule of mine? (I just looked at my calendar for this weekend... Regan is in a Christmas parade, Aidan's going to a birthday birthday party and has basketball game and practice, and we have fun evening plans for Saturday night. To top it off, Christmas is 22 days a way, and I wanted to get the tree and decorate this weekend. I have done nothing... No decorating or shopping... to prepare yet!! Yikes!)
Here's some information about Neutrophil:
Neutrophil - Type of White Blood Cell (WBC)
Definition: A type of white blood cell (WBC) filled with microscopic sacs (granules) containing enzymes that digest bacteria and other microorganisms. This process is known as phagocytosis.
Neutrophils surround "intruders" in your blood and "eat" them, thereby destroying potential infections. These white blood cells are a very important part of your immune system. Neutrophils are produced in the bone marrow.
Tuesday, December 1, 2009
Appointment with the General Surgeon
Yesterday, I met with Dr. Nancy Demore, the General Surgeon who will perform the mastectomy. Dr. Demore was on board with a skin saving mastectomy but doesn't think I'm a candidate for saving my nipple... As for the type of incision she will make, she said she would follow what the plastic surgeon believes would provide the best outcome. She said she would probably have to make an inverted T (aka "lollipop") incision. She understands that I am very motivated to have reconstruction immediately. So, she would perform the mastectomy and have the plastic surgeon follow her in the operating room. I would like to have implants put in right away but I may have to settle with tissue expanders first. (There could be complications with radiating over implants.)
You can see the type of surgery I would prefer here...
http://www.thedoctorstv.com/main/procedure_list/830
If I had followed the first plan presented to me, the general surgeon here in Greensboro wouldn't have done a skin saving mastectomy!! How crazy is that?! I'm glad I went to Chapel Hill for second opinions and I'm glad I had time to do some research before such a big surgery.
Right now, I'm trying to decide if I'm going to do just one or both. The biggest issue I have with doing both is the loss of feeling... My skin will feel numb... from the collar bone down to the bra line to under my arm. That's a lot of numbness. I don't know about you, but I hate the feeling I have after the dentist numbs my mouth. Now, think of that numbness lasting forever! Ugh!
Dr. Demore said the plastic surgeon, Dr. Halvorson, is fantastic. I will be able to see pictures of his work and ask a bunch of questions next week at my Tuesday appointment.
I do need to make another appointment with the radiologist so I can make some decisions about the implant or tissue expanders. Hopefully, I can get an appointment with her soon.
I'm off to my blood lab, follow up appointment and chemo appointments now... More later...
You can see the type of surgery I would prefer here...
http://www.thedoctorstv.com/main/procedure_list/830
If I had followed the first plan presented to me, the general surgeon here in Greensboro wouldn't have done a skin saving mastectomy!! How crazy is that?! I'm glad I went to Chapel Hill for second opinions and I'm glad I had time to do some research before such a big surgery.
Right now, I'm trying to decide if I'm going to do just one or both. The biggest issue I have with doing both is the loss of feeling... My skin will feel numb... from the collar bone down to the bra line to under my arm. That's a lot of numbness. I don't know about you, but I hate the feeling I have after the dentist numbs my mouth. Now, think of that numbness lasting forever! Ugh!
Dr. Demore said the plastic surgeon, Dr. Halvorson, is fantastic. I will be able to see pictures of his work and ask a bunch of questions next week at my Tuesday appointment.
I do need to make another appointment with the radiologist so I can make some decisions about the implant or tissue expanders. Hopefully, I can get an appointment with her soon.
I'm off to my blood lab, follow up appointment and chemo appointments now... More later...
Thursday, November 19, 2009
Appointments being made...
I now have the last "official" chemo date set. (Although, I will continue to sit in the chemo chair for Herceptin, a targeted therapy, every week until the surgery.) I also have appointments set up with the surgeons in Chapel Hill to kick off the next (and scariest) phase of my journey.
The last chemo date (that includes Taxol and taking Lapatinib) is January 12th.
The appointment with the General Surgeon, Dr. Demore, is set for the Monday after Thanksgiving, November 30th at 3:40. (So soon!)
The appointment to meet with the plastic surgeon, Dr. Halvorson, is a week later on December 8th, 1pm.
I believe I will have a mastectomy sometime after my 40th birthday (which is Februay 1st). Note: Between January 12th and the TBD surgery date, I will continue getting Herceptin on Tuesdays at the Regional Cancer Center via the port.
Those are the updates I have for now....
Thanks for the continued love, prayers and support! =)
The last chemo date (that includes Taxol and taking Lapatinib) is January 12th.
The appointment with the General Surgeon, Dr. Demore, is set for the Monday after Thanksgiving, November 30th at 3:40. (So soon!)
The appointment to meet with the plastic surgeon, Dr. Halvorson, is a week later on December 8th, 1pm.
I believe I will have a mastectomy sometime after my 40th birthday (which is Februay 1st). Note: Between January 12th and the TBD surgery date, I will continue getting Herceptin on Tuesdays at the Regional Cancer Center via the port.
Those are the updates I have for now....
Thanks for the continued love, prayers and support! =)
Tuesday, November 17, 2009
Very disturbing...
If you haven't heard about the new recommendations from the US Preventative Services Task Force, please read this article...
http://www.npr.org/templates/story/story.php?storyId=120470428&sc=fb&cc=fp
Obviously, I don't agree with the recommendations. I don't understand how the "risks" of a self breast exams and mammograms outweigh the benefits of saving a life. False-positive results leading to a biopsy or increased anxiety are not good reasons to forgo self exams and mammograms for those younger than 50!
I don't have a family history of breast cancer and I'm under 40. Come on... Should I NOT do a self exam?!! This is positively absurd advise. It seems that more and more women UNDER 40 are being diagnosed. Early diagnoses is important to increasing survival rates. I wish I had had a mammogram before I felt the lump. Maybe, a mastectomy wouldn't be in my future. But, since I wasn't yet 40, I didn't have one before I detected the lump. These cells have been in my body for 5-8 years. If anything, I wish the recommendations were to start having mammograms earlier not later!
The task force says that this advise isn't for those with "signs or symptoms" of cancer. But, how would one know they had a sign if they didn't do a self breast exam?
I sincerely hope that the task force reverses this recommendation! It is a BAD message to send to women, doctors and health insurance agencies. We shouldn't go BACKWARDS in this fight that will affect 1 in every 8 women.
**************************************************************
New Recommendations From The U.S. Preventive Services Task Force
Until now, the independent voluntary task force funded by the Department of Health and Human Services recommended mammography every one to two years for women aged 40 or older. The U.S. Preventive Services Task Force now advises against routine screening mammography in women between the ages of 40 and 49, saying the benefits are small, and the screenings could do harm.
* Note these recommendations are intended for those who do not have signs or symptoms, or family history of breast cancer.
More On The Recommendations:
— Women aged 50 to 74 should have mammography every two years. The benefit of mammography every two years is nearly the same as that of doing it every year, and less-frequent screenings are about 50 percent less likely to do harm.
— No more breast self-exams. The recent analysis found no evidence that self- or clinical examination reduces breast cancer death rates.
— More evidence is needed on whether mammography is beneficial after age 74.
— Not enough information to know whether newer types of mammography or magnetic resonance imaging are any better than regular film mammography results.
The Research
— Since the last recommendation in 2002, the task force has evaluated new studies on the three types of breast cancer screening, as well as commissioning research with computer-simulation models. That research compared the expected health outcomes of mammography screening at different ages and frequencies (every year or every two years).
— For women aged 50 and older, having a mammogram is associated with lower odds of dying of breast cancer.
— However, the analysis found that for women aged 40 to 49, the benefits were small, and not necessarily worth the risk. Mammogram screenings could have potentially harmful effects, including false-positive results that could lead to unnecessary procedures. Additionally, some results can lead to a diagnosis and treatment of cancer that never would have surfaced on its own within a woman's natural lifetime.
http://www.npr.org/templates/story/story.php?storyId=120470428&sc=fb&cc=fp
Obviously, I don't agree with the recommendations. I don't understand how the "risks" of a self breast exams and mammograms outweigh the benefits of saving a life. False-positive results leading to a biopsy or increased anxiety are not good reasons to forgo self exams and mammograms for those younger than 50!
I don't have a family history of breast cancer and I'm under 40. Come on... Should I NOT do a self exam?!! This is positively absurd advise. It seems that more and more women UNDER 40 are being diagnosed. Early diagnoses is important to increasing survival rates. I wish I had had a mammogram before I felt the lump. Maybe, a mastectomy wouldn't be in my future. But, since I wasn't yet 40, I didn't have one before I detected the lump. These cells have been in my body for 5-8 years. If anything, I wish the recommendations were to start having mammograms earlier not later!
The task force says that this advise isn't for those with "signs or symptoms" of cancer. But, how would one know they had a sign if they didn't do a self breast exam?
I sincerely hope that the task force reverses this recommendation! It is a BAD message to send to women, doctors and health insurance agencies. We shouldn't go BACKWARDS in this fight that will affect 1 in every 8 women.
**************************************************************
New Recommendations From The U.S. Preventive Services Task Force
Until now, the independent voluntary task force funded by the Department of Health and Human Services recommended mammography every one to two years for women aged 40 or older. The U.S. Preventive Services Task Force now advises against routine screening mammography in women between the ages of 40 and 49, saying the benefits are small, and the screenings could do harm.
* Note these recommendations are intended for those who do not have signs or symptoms, or family history of breast cancer.
More On The Recommendations:
— Women aged 50 to 74 should have mammography every two years. The benefit of mammography every two years is nearly the same as that of doing it every year, and less-frequent screenings are about 50 percent less likely to do harm.
— No more breast self-exams. The recent analysis found no evidence that self- or clinical examination reduces breast cancer death rates.
— More evidence is needed on whether mammography is beneficial after age 74.
— Not enough information to know whether newer types of mammography or magnetic resonance imaging are any better than regular film mammography results.
The Research
— Since the last recommendation in 2002, the task force has evaluated new studies on the three types of breast cancer screening, as well as commissioning research with computer-simulation models. That research compared the expected health outcomes of mammography screening at different ages and frequencies (every year or every two years).
— For women aged 50 and older, having a mammogram is associated with lower odds of dying of breast cancer.
— However, the analysis found that for women aged 40 to 49, the benefits were small, and not necessarily worth the risk. Mammogram screenings could have potentially harmful effects, including false-positive results that could lead to unnecessary procedures. Additionally, some results can lead to a diagnosis and treatment of cancer that never would have surfaced on its own within a woman's natural lifetime.
Wednesday, November 4, 2009
Another Round of Chemo... Done
I had blood labs, a follow up visit and chemo yesterday. My white blood count was down a bit but it wasn't down enough to stop my chemo. (Thank goodness!)
I asked to stay on a 75% dose of Taxol since I still have tingling, albeit not bad, in my feet. I was informed that they would keep me at this level from now on. I'm glad to hear that... It eases my mind since I was so concerned about permanent damage to my nerves.
They started me back on the daily dose of Lapatinib. Fortunately, my dose is now 2 pills instead of 3 each night. Even so, before taking the pills last night, I paused, realizing that my stomach issues would get worse again... But, hopefully, a 3rd less of the dose will help in that area... So, down the pills went. (I can feel the crampiness a bit this morning. But, nothing is too bad yet.)
On a happy note, I'm glad to report that the peach fuzz on the top of my head is getting fuzzier. I'm very thankful for that...
On my next set of "to dos" is finding the best surgeons for the surgery I will have in February... I'm still waiting to hear back about the plastic surgeon in Chapel Hill who will put in the tissue expanders after the general surgeon does my mastectomy... Hopefully, I can get an appointment with that one soon!
I have also done some limited research on reconstructive plastic surgeons for my final surgery. The best work I have seen is from a doctor who is all the way out in Beverly Hills! That's not so convenient... But, I want the best even if he isn't in my network... We'll see how cost prohibitive (out of network, flights, hotel) that will be... But, I'm shooting high since I plan to be here until I'm old and grey!
I asked to stay on a 75% dose of Taxol since I still have tingling, albeit not bad, in my feet. I was informed that they would keep me at this level from now on. I'm glad to hear that... It eases my mind since I was so concerned about permanent damage to my nerves.
They started me back on the daily dose of Lapatinib. Fortunately, my dose is now 2 pills instead of 3 each night. Even so, before taking the pills last night, I paused, realizing that my stomach issues would get worse again... But, hopefully, a 3rd less of the dose will help in that area... So, down the pills went. (I can feel the crampiness a bit this morning. But, nothing is too bad yet.)
On a happy note, I'm glad to report that the peach fuzz on the top of my head is getting fuzzier. I'm very thankful for that...
On my next set of "to dos" is finding the best surgeons for the surgery I will have in February... I'm still waiting to hear back about the plastic surgeon in Chapel Hill who will put in the tissue expanders after the general surgeon does my mastectomy... Hopefully, I can get an appointment with that one soon!
I have also done some limited research on reconstructive plastic surgeons for my final surgery. The best work I have seen is from a doctor who is all the way out in Beverly Hills! That's not so convenient... But, I want the best even if he isn't in my network... We'll see how cost prohibitive (out of network, flights, hotel) that will be... But, I'm shooting high since I plan to be here until I'm old and grey!
Wednesday, October 28, 2009
Yesterday's Chemo
My mom took me for my all day outing at the Regional Cancer Center yesterday for blood work (8:30), doctor's appt (9am), and chemo (11am-2pm).
I have a little bit of a cold but my blood counts looked good. (Yay!!)
We met with Cindy (the study nurse coordinator) and Dr. Rubin. I described my concern that the tingling got worse last week even though I didn't have chemo. Luckily, three days ago, the tingling got MUCH better. It was no longer driving me crazy.
We also discussed the hives. We all believe that the 3 Lapatinib pills I was taking nightly caused those. So, this is what we decided...
We would go ahead with chemo. A full dose of Herceptin (hooray! my favorite), 75% of the Taxol (I'm glad he reduced the amount) and one more week off of Lapatinib (which my stomach appreciates the continued break). Next week I'll probably start back on Lapatinib with 2 pills instead of 3. Hopefully, that will help.
I had the best chemo room available yesterday... the one with two big windows and a bed. My mom loved the windows. And, she even napped with me for a while. (The benadryl is still too much to even fight. Sleep overcomes me!)
When we got home, I slept some more. But, forced myself to wake up for Regan's 6pm dance class. She got to wear her Halloween costume and they performed a couple of dances for us. My favorite was the Monster Mash routine!
Except for waking up with a headache, I feel fine today. And, was able to to find some fun socks for the kids to wear for "Crazy Sock" day at school.
I'm so glad my parents are here... It is so nice. Plus, it's a great week with all the fun Halloween/Fall festivities going on! The Wizard of Oz trail and trick-or-treating is coming up on Saturday. What a fabulous line up for their last day here!
I have a little bit of a cold but my blood counts looked good. (Yay!!)
We met with Cindy (the study nurse coordinator) and Dr. Rubin. I described my concern that the tingling got worse last week even though I didn't have chemo. Luckily, three days ago, the tingling got MUCH better. It was no longer driving me crazy.
We also discussed the hives. We all believe that the 3 Lapatinib pills I was taking nightly caused those. So, this is what we decided...
We would go ahead with chemo. A full dose of Herceptin (hooray! my favorite), 75% of the Taxol (I'm glad he reduced the amount) and one more week off of Lapatinib (which my stomach appreciates the continued break). Next week I'll probably start back on Lapatinib with 2 pills instead of 3. Hopefully, that will help.
I had the best chemo room available yesterday... the one with two big windows and a bed. My mom loved the windows. And, she even napped with me for a while. (The benadryl is still too much to even fight. Sleep overcomes me!)
When we got home, I slept some more. But, forced myself to wake up for Regan's 6pm dance class. She got to wear her Halloween costume and they performed a couple of dances for us. My favorite was the Monster Mash routine!
Except for waking up with a headache, I feel fine today. And, was able to to find some fun socks for the kids to wear for "Crazy Sock" day at school.
I'm so glad my parents are here... It is so nice. Plus, it's a great week with all the fun Halloween/Fall festivities going on! The Wizard of Oz trail and trick-or-treating is coming up on Saturday. What a fabulous line up for their last day here!
Monday, October 26, 2009
Last Week...
Last Tuesday, I went in for chemo and was rejected... Yes, I still had (and still have almost another week later) tingling in my fingers and toes. But, that wasn't why they told me I couldn't have chemo.
The night before, my legs, stomach & back broke out into hives. I think it is from the lapatinib pills that I was taking nightly. Those caused the rash on my face and the stomach issues. So, I blame those pills. But, they decided that they should follow protocol and take me off of all chemo drugs for a week. (I really wanted to at least get Herceptin. That is probably the best drug I'm on with the least side effects. But, the answer was "no"!)
Instead, I had to take meth prednisone. (Yuck!) I had to take 6 pills on the first day and it made me dizzy and hot. Plus, those pills make you look puffy. (And, I don't like to look puffy!) Thankfully, I finished the pack of pills yesterday.
I have chemo on my schedule for tomorrow. But, first, I'll get some bloodwork tests done and meet with my doctor to discuss what we are going to do. I still have tingling in my hands and feet. But, it's not as bad as it was before. (Although, tingling for three weeks straight isn't a good thing.) I'm also hoping that my blood count looks good...
On Friday night, I started to feel like I was coming down with a cold. I was stuffy during the night and then started to lose my voice. By yesterday, I completely lost my voice. But, I did, thankfully, feel better than I sounded.
On a very bright note, my parents arrived on Saturday around 6pm and joined me and the kids at the "Goulash" fall festival downtown... We especially enjoyed the cemetery ghost walk put together by the Greensboro Historical Museum. Then, we went to see Doug perform at the Idiot Box. My parents finally made it to my house (after a full day of driving & activities with us) by 10pm!! It's wonderful to have them here! See some pumpkin patch pictures below...
The night before, my legs, stomach & back broke out into hives. I think it is from the lapatinib pills that I was taking nightly. Those caused the rash on my face and the stomach issues. So, I blame those pills. But, they decided that they should follow protocol and take me off of all chemo drugs for a week. (I really wanted to at least get Herceptin. That is probably the best drug I'm on with the least side effects. But, the answer was "no"!)
Instead, I had to take meth prednisone. (Yuck!) I had to take 6 pills on the first day and it made me dizzy and hot. Plus, those pills make you look puffy. (And, I don't like to look puffy!) Thankfully, I finished the pack of pills yesterday.
I have chemo on my schedule for tomorrow. But, first, I'll get some bloodwork tests done and meet with my doctor to discuss what we are going to do. I still have tingling in my hands and feet. But, it's not as bad as it was before. (Although, tingling for three weeks straight isn't a good thing.) I'm also hoping that my blood count looks good...
On Friday night, I started to feel like I was coming down with a cold. I was stuffy during the night and then started to lose my voice. By yesterday, I completely lost my voice. But, I did, thankfully, feel better than I sounded.
On a very bright note, my parents arrived on Saturday around 6pm and joined me and the kids at the "Goulash" fall festival downtown... We especially enjoyed the cemetery ghost walk put together by the Greensboro Historical Museum. Then, we went to see Doug perform at the Idiot Box. My parents finally made it to my house (after a full day of driving & activities with us) by 10pm!! It's wonderful to have them here! See some pumpkin patch pictures below...
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