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!!!
Sunday, January 23, 2011
Counting down...
Friday was my 6th of eight infusions. It was Taxol again, but this time I was a little more ready for it so I'm hoping to avoid the "hit-by-a-truck" sensation. Of course that means that the alternative is drug induced oblivion, but I think I'll take it.
I think things are going well. I'll be meeting with my surgeon in the next week or so. When I last met with my oncologist she said that this was the first time that she could honestly say that she couldn't feel the tumor at all. That doesn't mean that it's gone, just that it can't be detected without an ultrasound or MRI. Considering it was approximately the size of a golf ball when we started all this, I guess that's good. I'm not sure if it will change future treatment plans (surgery and radiation), but it has to be good that the cancer cells have responded so well to the chemo.
More good news is that my Dermatomyositis seems to finally be responding. My hands look better than they have in a year. I don't think they'll ever be the same, but considering that two weeks ago the skin was peeling off in layers, I suppose I'll take them as they are and be content.
In the beginning, my doctors all kept saying that they were certain that the Cancer had jumpstarted the Dermatomyositis and with the Cancer gone, there would be nothing to drive the Dermatomyositis so it would just go away. I wasn't convinced and after 10 weeks of chemo, even they were starting to say that the two conditions might not be related at all, but finally after the 5th round of chemo, things started looking different and for the first time, I have a little hope that Cancer treatment really will take care of both conditions. I guess we really won't know for sure until I'm officially declared Cancer free, but I'm definitely more hopeful than I have been in the past and that is huge because the Dermatomyositis was horrible. Though it would not be the same for everyone, in my case, it was worse than the Cancer.
So even though I'm not really going to be done with Cancer treatment until probably October or November, at least the chemo part is almost done. Two treatments left, and counting.
I think things are going well. I'll be meeting with my surgeon in the next week or so. When I last met with my oncologist she said that this was the first time that she could honestly say that she couldn't feel the tumor at all. That doesn't mean that it's gone, just that it can't be detected without an ultrasound or MRI. Considering it was approximately the size of a golf ball when we started all this, I guess that's good. I'm not sure if it will change future treatment plans (surgery and radiation), but it has to be good that the cancer cells have responded so well to the chemo.
More good news is that my Dermatomyositis seems to finally be responding. My hands look better than they have in a year. I don't think they'll ever be the same, but considering that two weeks ago the skin was peeling off in layers, I suppose I'll take them as they are and be content.
In the beginning, my doctors all kept saying that they were certain that the Cancer had jumpstarted the Dermatomyositis and with the Cancer gone, there would be nothing to drive the Dermatomyositis so it would just go away. I wasn't convinced and after 10 weeks of chemo, even they were starting to say that the two conditions might not be related at all, but finally after the 5th round of chemo, things started looking different and for the first time, I have a little hope that Cancer treatment really will take care of both conditions. I guess we really won't know for sure until I'm officially declared Cancer free, but I'm definitely more hopeful than I have been in the past and that is huge because the Dermatomyositis was horrible. Though it would not be the same for everyone, in my case, it was worse than the Cancer.
So even though I'm not really going to be done with Cancer treatment until probably October or November, at least the chemo part is almost done. Two treatments left, and counting.
Friday, January 14, 2011
So that's what it feels like to be hit by a truck.
When I spoke with my oncologist right before my first infusion of Taxol last Friday she said, "This is the easier drug for most people. You might experience a little body ache." Then she asked me what kind of painkillers I had already at home. I told her I had 800 mg Ibuprofen capsules, and then, joking, I added that I had a few Percocet tablets left over from my last c-section. She just looked at me and said, "Okay, start with the Ibuprofen and then use the Percocet." I just stared at her, but I was thinking, "I'm going to need Percocet?!? That's what they give me when they have cut me open and yanked a watermelon out of my gut!" At that point I should have asked her exactly what she meant by "a little body ache," but I didn't. But that's okay, because about two days after infusion, I figured out exactly what she meant. What she actually meant was "you will feel like you have just been hit by a truck," and I did.
My Taxol infusion ended about 5 pm on Friday the 7th. I felt fine all day Saturday but woke up at about 2 am Sunday morning and my whole body was aching. I couldn't get back to sleep so I got up and took my Ibuprofen. It didn't even touch it. By Sunday afternoon I was sure that I was dying. It's not something I can explain. It wasn't just bone ache or just muscle ache. It was everything. My toes hurt, my legs hurt, my FINGERNAILS hurt. I laid there on my bed most of the day in the fetal position, whining in a way that could put even my 5 year old to shame. Finally gave in and went for the good stuff. I love Percocet. I slept like the dead that night and even got up to go to work, but the drugs wore off about 1 pm and I hit the wall. Went home. From then on it's been just Percocet. Wednesday was pretty bad. I woke up only semi-conscious. My fatigue levels were off the chart, but I honestly couldn't tell you if it was exhaustion due to the chemo, a Dermatomyositis flare, or if I was just hung over from all the lovely painkilling, sleepsaving Percocet I'd ingested the night before. Regardless of what was causing it, I had things going on at work that day so staying home wasn't an option so I dragged my butt out of bed, somehow managed to get the two kids dressed and off to the babysitter and school and went to work. I just kept hoping that no one would notice the way I kept staggering up and down the halls. I really must have looked like I was wasted.
Today is Friday and I felt fine most of the day. Well, I guess I know what to expect from this drug for the last three infusions. Pain. Or a drug-induced oblivion. (Which do you think I'll choose?) So, if you happen to see me within the first 6 days or so of infusion, just know that I am not intoxicated and I'm not on drugs. At least not the illegal ones. I have, however, just been hit by a truck.
My Taxol infusion ended about 5 pm on Friday the 7th. I felt fine all day Saturday but woke up at about 2 am Sunday morning and my whole body was aching. I couldn't get back to sleep so I got up and took my Ibuprofen. It didn't even touch it. By Sunday afternoon I was sure that I was dying. It's not something I can explain. It wasn't just bone ache or just muscle ache. It was everything. My toes hurt, my legs hurt, my FINGERNAILS hurt. I laid there on my bed most of the day in the fetal position, whining in a way that could put even my 5 year old to shame. Finally gave in and went for the good stuff. I love Percocet. I slept like the dead that night and even got up to go to work, but the drugs wore off about 1 pm and I hit the wall. Went home. From then on it's been just Percocet. Wednesday was pretty bad. I woke up only semi-conscious. My fatigue levels were off the chart, but I honestly couldn't tell you if it was exhaustion due to the chemo, a Dermatomyositis flare, or if I was just hung over from all the lovely painkilling, sleepsaving Percocet I'd ingested the night before. Regardless of what was causing it, I had things going on at work that day so staying home wasn't an option so I dragged my butt out of bed, somehow managed to get the two kids dressed and off to the babysitter and school and went to work. I just kept hoping that no one would notice the way I kept staggering up and down the halls. I really must have looked like I was wasted.
Today is Friday and I felt fine most of the day. Well, I guess I know what to expect from this drug for the last three infusions. Pain. Or a drug-induced oblivion. (Which do you think I'll choose?) So, if you happen to see me within the first 6 days or so of infusion, just know that I am not intoxicated and I'm not on drugs. At least not the illegal ones. I have, however, just been hit by a truck.
Saturday, January 8, 2011
Fifth of eight.
I had my fifth infusion yesterday. It was the first infusion of the new drug, Taxol. It's supposed to be easier to tolerate. For most people. Low incidence of nausea so no anti-nausea meds this time, unless I need them. I won't. Yay! I hated those anti-nausea meds. The big one with this is just supposed to be bone/muscle pain. That I can deal with. I've got my 800 mg of ibuprofen and my personal drug of choice, Percocet, standing by and ready, but so far nothing. Maybe I won't need them. We'll see.
I met two new people in the infusion room yesterday. They were both on their first treatment. One was a woman about my age, maybe a little younger, with breast cancer. Her treatment was the same as mine. Her condition sounded almost the same as mine too except they had found the cancer in her lymph nodes and they don't think it's in mine, though they haven't actually gone in to check yet. The second person was a guy about the same age too who had stage 4 non-hodgkins lymphoma. He told us about it. It was a little scary. His nurse came in and was talking to him about some of his test results and possible complications and I was really scared for him. He was young with a young wife. It helped me remember that no matter how bad you think your situation is, there is always going to be someone who is worse off, so have your pity party (that is still necessary) and move on with life and try to help those who are worse off as much as you can.
I met two new people in the infusion room yesterday. They were both on their first treatment. One was a woman about my age, maybe a little younger, with breast cancer. Her treatment was the same as mine. Her condition sounded almost the same as mine too except they had found the cancer in her lymph nodes and they don't think it's in mine, though they haven't actually gone in to check yet. The second person was a guy about the same age too who had stage 4 non-hodgkins lymphoma. He told us about it. It was a little scary. His nurse came in and was talking to him about some of his test results and possible complications and I was really scared for him. He was young with a young wife. It helped me remember that no matter how bad you think your situation is, there is always going to be someone who is worse off, so have your pity party (that is still necessary) and move on with life and try to help those who are worse off as much as you can.
Wednesday, December 29, 2010
Stupid egg thing.
I've had a new development and it is just odd enough that I thought it deserved a blog entry. I've been on the adriamycin/cytoxin chemo mix for two months now. It's been a total of four chemo cycles and I felt like I just about had it figured out until a few days ago. On Monday I woke up with very sore hands and feet. My hands were very red and painful, but the redness looked really different from the usual Dermatomyositis rash that flares up once the steroids from the last infusion have left my system. They are always sore, but now I had a really hard time doing simple things like opening doors or jars, pulling on my pants, tying balloons for my kids (seriously, that one nearly killed me. I prayed for the next 20 minutes that Lily didn't pop her balloon because there was no way my fingers would be able to tie another one.) Pretty much anything that involved the use of my thumbs was a killer.
Later in the morning, I discovered that my feet were just as sore and throughout the course of the day it got harder and harder to stand, let alone walk, without pain. I found that if I wore supportive shoes and tried to limit myself to the carpeted areas, it was a little easier to handle, but it still really hurt. The next day was just as bad. That night I really started looking at my hands and I realized that this wasn't a rash at all. They were bruises. They were starting to turn purple and ran from the base of my forefinger, down the palm and up to the tip of my thumb. Weird.
So then I pulled off my socks and really took a good look at my feet and sure enough there were big purple splotches around the base of the heal. I couldn't figure out what was going on and was even less certain about what to do about it. I was pretty sure it wasn't a Dermatomyositis issue. I'd never had bruises with it before. Pain yes, but not bruises and I didn't remember reading anything that discussed bruising as a problem with Dermatomyositis. I had to do something because if it got any worse, I was going to have to find a wheelchair to roll around in when I went back to work next week.
So this morning I broke down and called one of my angel nurses, leaving a message for her to call me. When she did and I explained the situation and she said, "Wow. That is really weird!" Okay. If I had anything to say about anything and I was the Queen of the World for a day, one of the first things I would do would be to ban that phrase, and anything like unto it, from all medical and health professionals. They would have some sort of microchip embedded in their brain that would zap them anytime they even began to form the words. To them, a statement like that just means, "Wow, that is so interesting! I've never heard that one before. I wonder if we can figure it out. The human body is so amazing! Little mysteries like this are really what make me love my job!" But somewhere between the time that that comment leaves their mouths and actually enters the ears of the patient, it changes into something more like, "I've never heard of that happening before. Are you sure you didn't make it up?" OR "Did you know that a lot of these symptoms are just psychological? People are afraid they will happen so they do. It's probably just in your head." OR (and this is the really scary one for me) "I have no idea why that is happening. I can't help you. I'm afraid you're on your own." That last one is what I actually heard. It's the last thing in the world anyone in pain wants to hear.
Anyway, she spoke with my oncologist and a couple of other doctors and they decided that I really needed to meet with my dermatologist (one of the doctors that initially diagnosed me with Dermatomyositis and has been helping me with those issues for the last year.) So I hung up, had a ten minute pity party over the fact that my Cancer doctors were shoving me off to another doctor because they had no idea how to deal with my latest trauma, called and made an appointment with my dermatologist for tomorrow afternoon and then did what the nerdy librarian girl does every time I get freaked out and panicked and feel like I am completely alone... I sent Elijah to a neighbor's to play, put Lily down for a nap and switched on my laptop to do a little research.
Here's what I learned after doing a few searches on "bruising" and "chemo" on a few of my favorite Cancer sites:
Normally if you are injured, the platelets in your blood stick together, forming a clot that stops the bleeding. Some forms of chemotherapy can inhibit or reduce the number of platelets in the blood by affecting the bone marrow where the platelets are formed. So when you have low platelet levels, you are going to bruise much more easily, sometimes even without any kind of injury.
So I read this and thought that that made perfect sense and was a little confused as to why my nurse didn't mention that bruising could be a common problem with patients undergoing chemotherapy, depending on the kind drug they were on, the platelet levels, etc. In her defense, I was throwing a lot of other stuff at her that may have thrown her off a bit, issues that may have been due to chemo, Dermatomyositis, steroid withdrawal, adrenal gland deficiency, yadda, yadda.
Armed with that little bit of information, I felt a little better, but it still didn't explain why the bruising was just on my hands and feet. I needed to think, so I went to my thinking place. The shower. So I'm sitting there in the shower (yes, I was sitting, feet hurt too much to stand) staring at my hands and feet trying to figure out what was wrong with me. I remember thinking how calloused my feet were even after I used that stupid Ped Egg thing a few days ago. All of a sudden a light came on in my head and I said out loud, to myself, as I am sitting there in the shower, "Marie, you are such an idiot."
Do you know what those Ped Egg things are? You can get them just about anywhere. They look like an egg shaped cheese grater. You use it on your feet if you have dry, rough heels. Several days ago I used one on my feet. I looked at my feet again and saw that most of the bruises were around the base of my heel where I'd used the Ped Egg/cheese grater thing. Then I looked at my hands. The bruise ran mostly along my thumb and up my palm to my forefinger, the exact area where I would have gripped that stupid egg thing.
Well, needless to say, I called back my dermatologist's office and cancelled the appointment. When my nurse called back I explained what I think had happened. She checked my last blood test taken just before my last infusion and they were a little low. They would have been even lower during the Ped Egg incident since it happened shortly after receiving a fresh, cell-killing dose of chemotherapy.
So there you have it. The last two days of pain and misery couldn't even be blamed on Cancer or chemo. It was entirely self-inflicted. Who knew that a little callous-removing would break open all the little blood vessels in my hands and feet and leave me hobbling around the house like a little 80 year old woman for the next week???? Well I guess I do now. Stupid egg thing.
Later in the morning, I discovered that my feet were just as sore and throughout the course of the day it got harder and harder to stand, let alone walk, without pain. I found that if I wore supportive shoes and tried to limit myself to the carpeted areas, it was a little easier to handle, but it still really hurt. The next day was just as bad. That night I really started looking at my hands and I realized that this wasn't a rash at all. They were bruises. They were starting to turn purple and ran from the base of my forefinger, down the palm and up to the tip of my thumb. Weird.
So then I pulled off my socks and really took a good look at my feet and sure enough there were big purple splotches around the base of the heal. I couldn't figure out what was going on and was even less certain about what to do about it. I was pretty sure it wasn't a Dermatomyositis issue. I'd never had bruises with it before. Pain yes, but not bruises and I didn't remember reading anything that discussed bruising as a problem with Dermatomyositis. I had to do something because if it got any worse, I was going to have to find a wheelchair to roll around in when I went back to work next week.
So this morning I broke down and called one of my angel nurses, leaving a message for her to call me. When she did and I explained the situation and she said, "Wow. That is really weird!" Okay. If I had anything to say about anything and I was the Queen of the World for a day, one of the first things I would do would be to ban that phrase, and anything like unto it, from all medical and health professionals. They would have some sort of microchip embedded in their brain that would zap them anytime they even began to form the words. To them, a statement like that just means, "Wow, that is so interesting! I've never heard that one before. I wonder if we can figure it out. The human body is so amazing! Little mysteries like this are really what make me love my job!" But somewhere between the time that that comment leaves their mouths and actually enters the ears of the patient, it changes into something more like, "I've never heard of that happening before. Are you sure you didn't make it up?" OR "Did you know that a lot of these symptoms are just psychological? People are afraid they will happen so they do. It's probably just in your head." OR (and this is the really scary one for me) "I have no idea why that is happening. I can't help you. I'm afraid you're on your own." That last one is what I actually heard. It's the last thing in the world anyone in pain wants to hear.
Anyway, she spoke with my oncologist and a couple of other doctors and they decided that I really needed to meet with my dermatologist (one of the doctors that initially diagnosed me with Dermatomyositis and has been helping me with those issues for the last year.) So I hung up, had a ten minute pity party over the fact that my Cancer doctors were shoving me off to another doctor because they had no idea how to deal with my latest trauma, called and made an appointment with my dermatologist for tomorrow afternoon and then did what the nerdy librarian girl does every time I get freaked out and panicked and feel like I am completely alone... I sent Elijah to a neighbor's to play, put Lily down for a nap and switched on my laptop to do a little research.
Here's what I learned after doing a few searches on "bruising" and "chemo" on a few of my favorite Cancer sites:
Normally if you are injured, the platelets in your blood stick together, forming a clot that stops the bleeding. Some forms of chemotherapy can inhibit or reduce the number of platelets in the blood by affecting the bone marrow where the platelets are formed. So when you have low platelet levels, you are going to bruise much more easily, sometimes even without any kind of injury.
So I read this and thought that that made perfect sense and was a little confused as to why my nurse didn't mention that bruising could be a common problem with patients undergoing chemotherapy, depending on the kind drug they were on, the platelet levels, etc. In her defense, I was throwing a lot of other stuff at her that may have thrown her off a bit, issues that may have been due to chemo, Dermatomyositis, steroid withdrawal, adrenal gland deficiency, yadda, yadda.
Armed with that little bit of information, I felt a little better, but it still didn't explain why the bruising was just on my hands and feet. I needed to think, so I went to my thinking place. The shower. So I'm sitting there in the shower (yes, I was sitting, feet hurt too much to stand) staring at my hands and feet trying to figure out what was wrong with me. I remember thinking how calloused my feet were even after I used that stupid Ped Egg thing a few days ago. All of a sudden a light came on in my head and I said out loud, to myself, as I am sitting there in the shower, "Marie, you are such an idiot."
Do you know what those Ped Egg things are? You can get them just about anywhere. They look like an egg shaped cheese grater. You use it on your feet if you have dry, rough heels. Several days ago I used one on my feet. I looked at my feet again and saw that most of the bruises were around the base of my heel where I'd used the Ped Egg/cheese grater thing. Then I looked at my hands. The bruise ran mostly along my thumb and up my palm to my forefinger, the exact area where I would have gripped that stupid egg thing.
Well, needless to say, I called back my dermatologist's office and cancelled the appointment. When my nurse called back I explained what I think had happened. She checked my last blood test taken just before my last infusion and they were a little low. They would have been even lower during the Ped Egg incident since it happened shortly after receiving a fresh, cell-killing dose of chemotherapy.
So there you have it. The last two days of pain and misery couldn't even be blamed on Cancer or chemo. It was entirely self-inflicted. Who knew that a little callous-removing would break open all the little blood vessels in my hands and feet and leave me hobbling around the house like a little 80 year old woman for the next week???? Well I guess I do now. Stupid egg thing.
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