Two things worthy of note. I had another breast MRI this morning. You remember, the one where you lay on your belly with the girls hanging through these medium-sized holes and they shove you into a tube where you lie with your arms stretched up above your head. This one wasn't so bad as the first one. First of all, this time when I walked into the room, there were two women standing there waiting for me. That was refreshing. There are women that work in Radiology after all! And second, this time I didn't have a needle lodged in my chest. It's not so comfortable to lie on your stomach with one of those.
I should have results on Tuesday. I'm really interested in these, they they will indicate even better than the mammogram I had a few days ago how well the tumor responded to the chemo treatment. I asked my oncologist what would have to happen for me to get out of radiation treatment without increasing my risk of recurring cancer in the years to come. She said that I would need a "complete pathological response." That means that basically, when they do the mastectomy and test all that breast tissue and the lymph nodes they pull, that they are unable to find any Cancer cells left at all anywhere. That's what we're shooting for. That the chemo took care of everything. I'll still need to do the mastectomy, but I'll get out of radiation. It's already looking good considering the fact that the mammogram showed absolutely nothing, but then a mammogram shows nothing on a cellular level and I've learned not to put a lot of faith in those from past experience, so we won't know for sure until surgery.
I also had some genetic testing done yesterday. That was interesting. I had to document a lot of my family history and any incidents of cancer and what age everyone died at. Then they needed a DNA sample from me. I wondered how there were going to take it. I assumed more blood, but then thought, maybe not, maybe they only need a strand of hair like on CSI...,. oh wait, that might be kind of difficult. They did it differently that I expected. She brought in a little bottle of scope mouthwash and told me to gargle and spit it into a little tube. They needed 20 ml so I had to gargle and spit several times. The last time she told me to run my tongue along my gums and try to get as much of the remaining saliva out of my mouth into the tube to give them as much DNA as possible. Doesn't that paint a pretty picture? She said the mouthwash kills the cells, but the DNA is intact so it still works. Crazy. Oh well, at least I didn't have to get poked. Not that that is really a big deal anymore.
Anyway, I'm doing the genetic testing for two reasons. First, because it will help the other women in my family, and second because it will help me decide whether or not I do a single or bilateral mastectomy. Here's how it works. The genetic testing will tell me for sure whether or not I am genetically predisposed for breast cancer. They are looking for the BRCA1 and BRCA2 genes, that I would have inherited from my mom or dad. Most likely from my mother since there seem to be more cancer on that side of the family. Thanks mom. Anyway, BRCA1 and BRCA2 are actually mutations of other normal genes. If I have it, then that means that my sisters, daughter and neices all have a 50% chance of having it. The boys do too, but it's not so much an issue for them (does slightly increast the risk of prostate cancer for them, but it is miniscule) except that they can pass it on to their daughters making it more likely for them to develop breast cancer. So if I have it, they will have a little more information and know that they need to be a little more aggressive in their breast cancer screenings. They can even be tested as well to see if they have the gene for sure.
I'm also doing it because of the chance of cancer showing up in the other breast. If I don't have BRCA1 or BRCA2, there is about a 2 percent risk that I will develop a new cancer in the other breast later in life, in which case I may only need to do a single mastectomy. If I do have one of those genes, the chances of a new cancer in the other breast jumps to 50-80%. So if I test positive, they're both coming off for sure. I'm not doing this again. The girls and I have been close for quite a long time now, but I'll have no problem getting rid of them if I have to. They have, after all, tried to kill me. All my loyalty went out the window the day of diagnosis. Besides, I'm going to get new and improved girls. More about that later.
Saturday, February 19, 2011
Friday, February 18, 2011
Eyelashes and mastectomies...
Today is my final chemo infusion, and it's a good thing too. Do you have any idea how difficult it is to apply mascara to a single eyelash??? I caught myself doing that the other day as I was getting ready for work. It was pretty pathetic. It was all I could do to keep myself from just grabbing my tweezers and yanking it out so I could just be done with it. I've never worn a lot of makeup, but I always liked mascara. Well, now I'm getting used to having naked eyes. Maybe I could make this work for me. I'll just get a bunch of tie-dyed scarves and do the hippie/granola thing. Why not? I've already done shepherd, biker, Aunt Jemima....
I met with my surgeon this week. Actually, she is the first of three surgeons that together will take me apart and put me back together again. I should probably mention that from here on in my little blog, things are going to start to get a little personal, so if you are one of my nephews, home teachers, male coworkers, or any other man that I see regularly and you think you might have trouble looking me in the eye the next time you see me, you may just want to have wife or girfriend read the blog and give you the highlights.
Anyway, met with surgeon #1. I love her. My appointment was at 2:30. Neil and I left shortly before 6:00, and very little of that time was actually spent waiting, unlike many doctors' offices I've been in. We spent four hours discussing next steps and options with the surgeon, her medical assistant and nurse. I love the nurse too, by the way. She was the first nurse that I talked to after diagnosis. She's the "Rock and Roll" nurse. (See first post.)
So the surgery is scheduled for March 18th. They think I may have to still have radiation after surgery, but that is still up in the air. It depends on a few different things. One, if there is cancer in the lymph nodes, they will push for radiation. They won't know that until they do a biopsy of one of my lymph nodes during surgery. Two, typically if the pre-chemo tumor was 5 cm or more, they push for radiation. Mine was 4.5 cm, so I'm kind of on the fence. Three, patient's preference. Of course I make the final decision of whether or not I do radiation. I'm hoping to avoid it, but am not going to decide anything until after they do the node biopsy. If there is cancer there, I'll do radiation. If there isn't, I may just decline.
As to surgery options, I will definitely be having at least a single mastectomy, possibly a bi-lateral mastectomy. Often women will choose have a bi-lateral done in order to decrease the chances of another occurance of breast cancer. Not the first cancer coming back, but a new occurance in the other breast. I asked what the chances were of that happening. They said about 2 percent, unless you were genetically predisposed. If that is the case, the odds go up to around 80 percent. I haven't done genetic testing yet. I have a cousin and two aunts, all on my mother's side that have had breast cancer, so the odds don't look too good for me. I'm hoping to have the genetic testing done in the next week or so to help me make a decision. Either way, it will be great to know because if I test positive, my sisters and daughter have a 50/50 chance of being positive too. So this would give them a heads up so they will know to be more agressive in their cancer screenings.
The surgery options have changed quite a bit in the last several years. There are several different kinds of surgery, but basically the two ends of the spectrum are your basic mastectomy where they remove the entire breast. Tissue, skin, everything. There is nothing left but a big 4 inch scar that runs horizontally across your chest. The other side of the spectrum is a total skin sparing mastectomy and I think this is fairly new in the last several years. It is used when the patient plans on doing reconstruction. In this surgery they make about a three inch incision on the breast running from about the armpit to the nipple. Then they separate the breast tissue from the skin layer, pull out the breast tissue, insert a skin expander that is filled with saline to expand the muscle tissue until you are finished with all your treatments and are ready for final reconstruction. I'm probably going with the latter. It will involve at least two separate surgeries, the mastectomy/skin expander surgery and then the reconstruction about 7 months later.
I'm thrilled with my surgeon up at Huntsman. She gave me a book she and the other surgeon that will also be working on me produced for all their patients considering mastectomies. It's amazing. It is rather large with big, color pictures on each page. Basically what they did is take one of their patients and followed her through mastectomy and reconstruction. It gives the patient a very detailed description of exactly what is going to happen. It's amazing. Disgusting, but amazing.
So now, it's really just up to me to decide exactly what I'm going to do. I had another mammogram yesterday. They wanted to get a good look at exactly how effective the chemo has been in reducing the size of the tumor. Before chemo, the tumor was about 4.5 cm in diameter. I hung around after the mammogram so I could talk to the doctor that was going to be looking at my films. When he came in he said that he couldn't see anything. There was nothing there. When I had one of my biopsies, back when I was first diagnosed, they inserted a tiny metal clip into the center of the tumor. It was a marker for its exact location so they could find it easily during imaging. He said he could see the marker but there was nothing around it.
So.... though a mammogram isn't going to show individual cancer cells that may be left, this is still definitely good. It means that if the chemo drugs were able to reduce a tumor of 4.5 cm down to nothing in 6 weeks of treatment, theres a pretty good chance that it has killed of any little random cancer cells that may have been hiding in other parts of my body. However, the doctors keep telling me that a treatment plan is established at the time of diagnosis and they have found that it is best to stick to that treatment plan regardless of what chemo does to the tumor size, so I'm not sure that this changes anything as far as surgery goes. We'll see. I have an MRI tomorrow. It shows even more detail so I'm interested to see if there is anything to see in that one. After that, my surgeon will take those test results, along with my treatment history to a panel of surgeons, medical oncologists, radiation oncologists, etc. to discuss and come up with a recommendation. Then I decide what I want to do.
So that's the latest. Done with chemo today. Only one week left of Taxol issues and then I'll try to rid my body of all the toxic waste and get healthy enough for surgery. I've always looked at this as being a three-phased treatment. First, chemo; second, mastectomy; third, reconstruction. I'm a third of the way done. It's a relief to be done with chemo, but somehow, I don't think that the next two steps are going to be any more pleasant. But that's okay, because in about 6 weeks, I just might start getting my eyelashes back!!!
I met with my surgeon this week. Actually, she is the first of three surgeons that together will take me apart and put me back together again. I should probably mention that from here on in my little blog, things are going to start to get a little personal, so if you are one of my nephews, home teachers, male coworkers, or any other man that I see regularly and you think you might have trouble looking me in the eye the next time you see me, you may just want to have wife or girfriend read the blog and give you the highlights.
Anyway, met with surgeon #1. I love her. My appointment was at 2:30. Neil and I left shortly before 6:00, and very little of that time was actually spent waiting, unlike many doctors' offices I've been in. We spent four hours discussing next steps and options with the surgeon, her medical assistant and nurse. I love the nurse too, by the way. She was the first nurse that I talked to after diagnosis. She's the "Rock and Roll" nurse. (See first post.)
So the surgery is scheduled for March 18th. They think I may have to still have radiation after surgery, but that is still up in the air. It depends on a few different things. One, if there is cancer in the lymph nodes, they will push for radiation. They won't know that until they do a biopsy of one of my lymph nodes during surgery. Two, typically if the pre-chemo tumor was 5 cm or more, they push for radiation. Mine was 4.5 cm, so I'm kind of on the fence. Three, patient's preference. Of course I make the final decision of whether or not I do radiation. I'm hoping to avoid it, but am not going to decide anything until after they do the node biopsy. If there is cancer there, I'll do radiation. If there isn't, I may just decline.
As to surgery options, I will definitely be having at least a single mastectomy, possibly a bi-lateral mastectomy. Often women will choose have a bi-lateral done in order to decrease the chances of another occurance of breast cancer. Not the first cancer coming back, but a new occurance in the other breast. I asked what the chances were of that happening. They said about 2 percent, unless you were genetically predisposed. If that is the case, the odds go up to around 80 percent. I haven't done genetic testing yet. I have a cousin and two aunts, all on my mother's side that have had breast cancer, so the odds don't look too good for me. I'm hoping to have the genetic testing done in the next week or so to help me make a decision. Either way, it will be great to know because if I test positive, my sisters and daughter have a 50/50 chance of being positive too. So this would give them a heads up so they will know to be more agressive in their cancer screenings.
The surgery options have changed quite a bit in the last several years. There are several different kinds of surgery, but basically the two ends of the spectrum are your basic mastectomy where they remove the entire breast. Tissue, skin, everything. There is nothing left but a big 4 inch scar that runs horizontally across your chest. The other side of the spectrum is a total skin sparing mastectomy and I think this is fairly new in the last several years. It is used when the patient plans on doing reconstruction. In this surgery they make about a three inch incision on the breast running from about the armpit to the nipple. Then they separate the breast tissue from the skin layer, pull out the breast tissue, insert a skin expander that is filled with saline to expand the muscle tissue until you are finished with all your treatments and are ready for final reconstruction. I'm probably going with the latter. It will involve at least two separate surgeries, the mastectomy/skin expander surgery and then the reconstruction about 7 months later.
I'm thrilled with my surgeon up at Huntsman. She gave me a book she and the other surgeon that will also be working on me produced for all their patients considering mastectomies. It's amazing. It is rather large with big, color pictures on each page. Basically what they did is take one of their patients and followed her through mastectomy and reconstruction. It gives the patient a very detailed description of exactly what is going to happen. It's amazing. Disgusting, but amazing.
So now, it's really just up to me to decide exactly what I'm going to do. I had another mammogram yesterday. They wanted to get a good look at exactly how effective the chemo has been in reducing the size of the tumor. Before chemo, the tumor was about 4.5 cm in diameter. I hung around after the mammogram so I could talk to the doctor that was going to be looking at my films. When he came in he said that he couldn't see anything. There was nothing there. When I had one of my biopsies, back when I was first diagnosed, they inserted a tiny metal clip into the center of the tumor. It was a marker for its exact location so they could find it easily during imaging. He said he could see the marker but there was nothing around it.
So.... though a mammogram isn't going to show individual cancer cells that may be left, this is still definitely good. It means that if the chemo drugs were able to reduce a tumor of 4.5 cm down to nothing in 6 weeks of treatment, theres a pretty good chance that it has killed of any little random cancer cells that may have been hiding in other parts of my body. However, the doctors keep telling me that a treatment plan is established at the time of diagnosis and they have found that it is best to stick to that treatment plan regardless of what chemo does to the tumor size, so I'm not sure that this changes anything as far as surgery goes. We'll see. I have an MRI tomorrow. It shows even more detail so I'm interested to see if there is anything to see in that one. After that, my surgeon will take those test results, along with my treatment history to a panel of surgeons, medical oncologists, radiation oncologists, etc. to discuss and come up with a recommendation. Then I decide what I want to do.
So that's the latest. Done with chemo today. Only one week left of Taxol issues and then I'll try to rid my body of all the toxic waste and get healthy enough for surgery. I've always looked at this as being a three-phased treatment. First, chemo; second, mastectomy; third, reconstruction. I'm a third of the way done. It's a relief to be done with chemo, but somehow, I don't think that the next two steps are going to be any more pleasant. But that's okay, because in about 6 weeks, I just might start getting my eyelashes back!!!
Sunday, February 6, 2011
Still here...
I haven't got much to report. I had my second to last chemo infusion yesterday. Seventh of eight, so I can see the light. I had something going on at work I didn't want to miss, so I pushed this last one off till Saturday. Another dose of Taxol so this week isn't going to be fun, but I know what to expect and it will be over soon enough.
I meet with my surgeon next week to talk about mastectomy options. They usually schedule surgery about 3 to four weeks after the last chemo infusion so it looks like I'll be having surgery sometime early April. After that I get a month or so to heal then I start radiation, which is done 5 days a week for about 6 weeks. Then about 6 months after radiation, I schedule reconstruction surgery with a plastic surgeon. I think I've figured out who I want to do that surgery, but she's in New Orleans. Hmmm... I guess I could use a vacation. I've never been to New Orleans before. That surgery should be sometime in december so it might actually be a good time to see Louisiana. So, hopefully by the time this year is over, I should be done with this whole cancer drama for a while.
I have had amazing support from friends and family through this whole chemo ordeal. Within the first three or four weeks after I started chemo, I had enough food in my fridge and freezer to last me the whole four months of chemo. I still have a few in the freezer that should last me up through the end of my last infusion. I was showered with hats and scarves and doo-rags that made sure that even though I was hairless, I always had some sort of stylish headgear to wear. Many ladies in the neigborhood had Elijah over for playdates with their kids so I could come home from work and crash for an hour or two without having a 5 year old jumping on me saying, "Mom, I'm bored, get up and play with me!!!"
And I have had some pretty amazing heavenly interventions. The Neulasta I receive after every chemo infusion is a $6500 injection. This is the drug that stimulates my body to produce more white blood cells, since the chemo just killed most of them off. It is what allows me to have chemo every two weeks without a huge risk of being hospitalized with a common cold. A pretty amazing drug actually. Anyway, my insurance pays a huge portion of that, but we are still left with a $450 coinsurance every two weeks. When I first realized that, I kind of freaked out. An extra $900 per month on top of chemo and other costs, would have been a little more than we could handle. So I got online and started looking for any kind of copayment assistance programs for Cancer patients. Turns out that the drug company that makes that drug has a program that will pay for 100% of our copayment. It was a bit of a pain to get it set up. I had to go through the hospital and they balked at it. They had never heard of it (I was a little shocked at that. This was the Huntsman Cancer Hospital and this was a program for a drug that is given to just about every chemo patient they are treating). Anyway, it took a month before they could determine that there would be no legal ramifications for them to support the program and agreed to get me registered. That has really saved us.
I'm a control freak. I freak out a lot if I feel out of control. I like to have a plan.....for everything. As soon as I am faced with an unknown, I go into crazy librarian mode until I have a plan. I have learned in the last seven or eight years (over and over again), that any time I am faced with something that is beyond my control, the Lord steps in and makes things better. Not completely better. Just better enough that I can get my arms around the rest. Like with the Neulasta. Like when Neil's surgeon's waived $35,000 of their fee that they had every right to charge us when he had brain surgery 6 years ago. Like when we have always found just the right doctors just when it started to feel like no one would be able to help us. Miracles. Some tiny. Some kind of mindblowing. But all definitely heaven sent.
So we have been really blessed. Thanks to all of you for your part in all these miracles.
SEVEN DOWN ONE TO GO!!!
I meet with my surgeon next week to talk about mastectomy options. They usually schedule surgery about 3 to four weeks after the last chemo infusion so it looks like I'll be having surgery sometime early April. After that I get a month or so to heal then I start radiation, which is done 5 days a week for about 6 weeks. Then about 6 months after radiation, I schedule reconstruction surgery with a plastic surgeon. I think I've figured out who I want to do that surgery, but she's in New Orleans. Hmmm... I guess I could use a vacation. I've never been to New Orleans before. That surgery should be sometime in december so it might actually be a good time to see Louisiana. So, hopefully by the time this year is over, I should be done with this whole cancer drama for a while.
I have had amazing support from friends and family through this whole chemo ordeal. Within the first three or four weeks after I started chemo, I had enough food in my fridge and freezer to last me the whole four months of chemo. I still have a few in the freezer that should last me up through the end of my last infusion. I was showered with hats and scarves and doo-rags that made sure that even though I was hairless, I always had some sort of stylish headgear to wear. Many ladies in the neigborhood had Elijah over for playdates with their kids so I could come home from work and crash for an hour or two without having a 5 year old jumping on me saying, "Mom, I'm bored, get up and play with me!!!"
And I have had some pretty amazing heavenly interventions. The Neulasta I receive after every chemo infusion is a $6500 injection. This is the drug that stimulates my body to produce more white blood cells, since the chemo just killed most of them off. It is what allows me to have chemo every two weeks without a huge risk of being hospitalized with a common cold. A pretty amazing drug actually. Anyway, my insurance pays a huge portion of that, but we are still left with a $450 coinsurance every two weeks. When I first realized that, I kind of freaked out. An extra $900 per month on top of chemo and other costs, would have been a little more than we could handle. So I got online and started looking for any kind of copayment assistance programs for Cancer patients. Turns out that the drug company that makes that drug has a program that will pay for 100% of our copayment. It was a bit of a pain to get it set up. I had to go through the hospital and they balked at it. They had never heard of it (I was a little shocked at that. This was the Huntsman Cancer Hospital and this was a program for a drug that is given to just about every chemo patient they are treating). Anyway, it took a month before they could determine that there would be no legal ramifications for them to support the program and agreed to get me registered. That has really saved us.
I'm a control freak. I freak out a lot if I feel out of control. I like to have a plan.....for everything. As soon as I am faced with an unknown, I go into crazy librarian mode until I have a plan. I have learned in the last seven or eight years (over and over again), that any time I am faced with something that is beyond my control, the Lord steps in and makes things better. Not completely better. Just better enough that I can get my arms around the rest. Like with the Neulasta. Like when Neil's surgeon's waived $35,000 of their fee that they had every right to charge us when he had brain surgery 6 years ago. Like when we have always found just the right doctors just when it started to feel like no one would be able to help us. Miracles. Some tiny. Some kind of mindblowing. But all definitely heaven sent.
So we have been really blessed. Thanks to all of you for your part in all these miracles.
SEVEN DOWN ONE TO GO!!!
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