It was 1am and I was awake. Now this seems to happen during the first week of chemo. Energy is so weird. Its like riding a roller coaster. You get these burst of energy and then come crashing down. And you never really know when they are going to hit you. So there I was last night at 1am and wide awake. Sadly I turned to the TV. My parents have cable and a bazillion channels surely there has to be something on. Wrong. Want to know what's on TV at 1am? Yea well I'm going to tell you anyway. Infomercials. Lots of them. I just don't get it. Who is up at 1am buying stuff off the TV? All I can come up with is closet shoppers who get up at 1am and sneak off into another room to buy stuff without their family knowing they are buying stuff off the TV.
So first up, an exercise machine that claimed to give you tight buns but looked like you could break your neck using it. Ok. It's hard watching people with that much energy demonstrating an exercise machine at 1am. I want to mellow out not get hyped up. Next.
A weight loss program. Nutrisystem or Jenny Craig can't remember now but one of those meals come in a box to your house. Ok. I guess committing to starting a diet plan at 1am is as good a time as any. Next.
Oxyclean. Ok this one I really didn't get because I'm pretty sure you can buy this stuff in the store but, just in case you wake up at 1am and realized you forgot to pick some up, hey you can just order off the TV and go back to sleep worry free. Next.
NO!NO! a what? I actually watched this one for awhile. Simply because I couldn't figure out what the bleep the darn thing was at first. Turned out to be some sort of hair removing device. It was a device but, the lady selling kept claiming that it didn't shave the hair and it didn't pull it out like other devices. So what did it do? Just how did it remove the hair? Must have been by magic because heck if she ever said how. Darn thing just mystified me too much, and somehow was making me think too much and was doing nothing to try and get me sleepy. Next.
A $400 vacuum cleaner. Ok I get this one. I get why it's being sold at 1am. You sure want to buy a $400 vacuum cleaner at 1am while hiding in the other room and no other family member knows of it. The vacuum cleaner I'm willing to pay $400 for better have a maid attached to it. Next.
Hair replacement for men. Ok hair plugs. I'm currently a bald woman, ok you bald men that are being kept up at 1am worrying over your baldness, get over it and go to sleep. Next.
1-800 party line. So here's a young woman dressed to the nines in her whore gear, call me now and we can have a party. What can I say? If that's how you want to spend your money and if you can go to sleep after? hey go for it. Not for me. Next.
A matress. A Mattress! Ok I actually get this one. It's 1am, you can't sleep, hey it's the mattress you are sleeping on keeping you awake. I wouldn't buy a mattress without testing it out but, this is a sleep number mattress so you don't have to test it out. You can adjust it whatever your needs are and finally, finally get the sleep you deserve. Ok I can actually see the point to selling this at 1am.
Ah at last logic and order is restored!
Wednesday, June 30, 2010
Monday, June 28, 2010
Who knew?
Who knew that I think the secret to not going into constipation while on chemo for me is.....flan. Yes, I saw this huge flan at Cost Co the day before I had chemo and I wanted it. Now I stay away from dairy during these days as it gives me gas but something told me get that. I ate huge chunks of it during chemo. I have eaten it everyday. And....no constipation. Yipee. Have officially moved past that stage. Ate a scrambled egg inside a flour tortilla this morning. And then had a craving for salty meat. Dad went and got me a ham steak. Been munching on that today. Go figure. So weird.
I mentioned Greet the Day in an earlier posts. Looking back now I had amazing energy exchange with this woman. I knew immediatley when she touched me that she was Reiki and told her so. Anyway, I did not have a reaction to the chemo and the next day my battered and bruised vein was almost healed. Today you can barely see anything and the vein is popping up all on its own. Make of it what you will. Maybe it even helped with the bowels.
Will be having the MRI on the 6th and seeing Dr. Barth on the 8th.
Until trying to stay relaxed and grateful I didn't end up in the ER again!
I mentioned Greet the Day in an earlier posts. Looking back now I had amazing energy exchange with this woman. I knew immediatley when she touched me that she was Reiki and told her so. Anyway, I did not have a reaction to the chemo and the next day my battered and bruised vein was almost healed. Today you can barely see anything and the vein is popping up all on its own. Make of it what you will. Maybe it even helped with the bowels.
Will be having the MRI on the 6th and seeing Dr. Barth on the 8th.
Until trying to stay relaxed and grateful I didn't end up in the ER again!
Saturday, June 26, 2010
Dr. Susan Love
I have mixed feelings about this woman. She is a breast cancer doctor and is doing the Army of Women for research and has partnered with Avon.
She is not looking for a cure for breast cancer but for an end to it. And I appreciate that. She has written books on breast cancer.
Now here is my mixed feelings. This is one mad woman. She is mad. And anger can be a great motivator but then it can be bad in other areas. What I don't like is that she feels there is too much focus on research and finding cures rather than a cause and end to breast cancer. Well, finding cures and treatments is easier than find a cause. We don't know what causes any cancer and treatments that gives us cures is not something to look down on. But, she does.
And she says things in ways that well I for one feel could be said better. For example formal self breast examines do no good. What she really means is just normal poking around will find the same thing. Ok. Well, just say don't worry about if you are doing a self breast examine correctly, just poke and feel around on a regular basis and get to know your breast and you'll be able to find something that way.
The one that really made my eye's pop is she said the early detection was just that early detection not a cure. Well, yea. Ok. She went on to say (darn it I can't find the interview now to cut and paste) that it doesn't really matter if you find breast cancer early or not. If you have bad cancer you are not going to do very well and if you have good cancer you are going to be fine and when you find it doesn't matter its only in a small sub group of about 30% of the women that it makes a difference. I sat there with my mouth hanging open. 30% is a lot! Also, you are not going to convince me that finding cancer even aggressive cancer before it's stage IV and has spread to oh say your brain is not a good thing.
And I'll say there is no such thing as good cancer or bad cancer. They just all have different options behind them. But, I wouldn't say any of them are good.
It just seems anything that is not focused on finding an end to breast cancer is poo pooed by her. I appreciate her efforts. I have joined the Army of Women and want to purchase the necklace she has on her site.
But, the mortality rate from breast cancer has dropped over 30% during the last 10 years and that is something to celebrate not be discouraged by.
Yes, I have mixed feelings.
She is not looking for a cure for breast cancer but for an end to it. And I appreciate that. She has written books on breast cancer.
Now here is my mixed feelings. This is one mad woman. She is mad. And anger can be a great motivator but then it can be bad in other areas. What I don't like is that she feels there is too much focus on research and finding cures rather than a cause and end to breast cancer. Well, finding cures and treatments is easier than find a cause. We don't know what causes any cancer and treatments that gives us cures is not something to look down on. But, she does.
And she says things in ways that well I for one feel could be said better. For example formal self breast examines do no good. What she really means is just normal poking around will find the same thing. Ok. Well, just say don't worry about if you are doing a self breast examine correctly, just poke and feel around on a regular basis and get to know your breast and you'll be able to find something that way.
The one that really made my eye's pop is she said the early detection was just that early detection not a cure. Well, yea. Ok. She went on to say (darn it I can't find the interview now to cut and paste) that it doesn't really matter if you find breast cancer early or not. If you have bad cancer you are not going to do very well and if you have good cancer you are going to be fine and when you find it doesn't matter its only in a small sub group of about 30% of the women that it makes a difference. I sat there with my mouth hanging open. 30% is a lot! Also, you are not going to convince me that finding cancer even aggressive cancer before it's stage IV and has spread to oh say your brain is not a good thing.
And I'll say there is no such thing as good cancer or bad cancer. They just all have different options behind them. But, I wouldn't say any of them are good.
It just seems anything that is not focused on finding an end to breast cancer is poo pooed by her. I appreciate her efforts. I have joined the Army of Women and want to purchase the necklace she has on her site.
But, the mortality rate from breast cancer has dropped over 30% during the last 10 years and that is something to celebrate not be discouraged by.
Yes, I have mixed feelings.
Today
Cheerios with a Metamucil chaser. Have been eating that combination today. I also managed to get down a piece of toast with butter and honey on it and a scrambled egg. Waiting to see how that all goes. Pushing water. Have found munching on salty corn chips helps with thirst and feeling like drinking more of the water.
Slept better last night. Was up and down going pee and drinking water but in between had good peaceful sleep.
Slept better last night. Was up and down going pee and drinking water but in between had good peaceful sleep.
Friday, June 25, 2010
It's all about the...
Poo. And I pooped. I made a poo with no stomach ache and it was normal and it's the first time I have made a poo this soon after chemo! And the first time the first poo after chemo was normal. Oh man maybe just maybe I will bypass constipation this time. I'm hopeful. More cheerios and more Metamucil! I really went crazy with it this week and was going poo about three times a day. Maybe that's what its going to take. And hopefully I figured it out at the end. Because I'm really hoping this is the last round. If not, I can muscle though two more.
Ok time for more cheerios.
Ok time for more cheerios.
Thursday, June 24, 2010
4th Round Completed!
Had a new nurse today. I liked her. We went on a vein search. My good vein is bruised beyond belief and she didn't want to use it. Well, because it hurts to get poked in a bruised vein. So I pointed out the veins that I have had success with in the past (with past IV for surgeries or blood draws) and ones that failed. I then told her that she is the one that did this every day so take a look and see if you find something you feel you can be successful at. So she did and she picked out a vein in my forearm. Now I never had an IV in my forearm and so I told her go for it. And she did. Poke and then she said dang it and pulled it right out. She said well its was nice a plump and as soon as I poked it, it disapeared. She said I don't know why. So now what do you want to try for. She said well, lets look at the vein that has been used although its bruised. So I told her your going to need to place the tie lower on my arm (towards my hand). She did and liked they way the vein was popping up but was worried about the bruising. I said you want to try it. She said if you'll let me. I said I'll just bite down, lets go for it. So she did. Amazingly it didn't hurt as much as the poke in the forearm. I told her hoping she wouldn't feel so bad about poking me in a bruised vein but that back fired because then she started appolgizing for having poked me in the forearm. Well I never been poked there before so how was anyone to know. Now I do. Forearm no good. The bruised vein was successful. She drew blood and was getting a great blood return. As usual. She said well old faithful came through again even bruised! I did work that vein out like crazy this past week. Squeezing the squeeze ball. Although it was bruised it did come through. Once again, it didn't fail me.
Greet The Day was there. Got a nice foot massage. And as soon as this woman placed her hands on me I knew this was a Reiki person. I said Reiki? She said with surprise yes. I told her I was level 3. We had an awesome energy exchange. At the end she said I received more from you than I gave and she thanked me. Greet the Day is a volunteer program and they do the foot massage for free but, most of the therapist who are trained in oncology massage therapy also have massage jobs. So I asked her where she worked. She told me and said she also does stuff on her own. I told I was going to be having surgery at some point and have a really hard time with it. I asked if she would come to the hospital when I come out of recovery and give me a treatment and she gave me her card and said absolutily she would do this and told me just to call her. I'm going to do this as soon as I have a surgery date and talk to my surgeon. I really think this will help me. Depending on when my surgery is and what time I might also talk to my internist. She is a Reiki master and came and gave me Reiki when I had trouble with my gallbladder surgery. Plus she gave me Xanax and that pulled me out of it. Also my insurance paid for it because she was able to bill it as a hospital visit which it was. So I might do that but, see this woman for an oncology massage before surgery. Look up Greet the Day they have a website and I think its a great organization.
Other great news, no reaction this time. Who knows why. So we were done by 2:30pm but, we didn't start treatment until about 10:30 because I had a list of things to go over with the nurse before we started. So total time for chemo was about 4 hours. Maybe even a little less with the vein search. List of things I went over. Well for starters I gave her one of the GUM toothbrushes that my Auntie E. sent me because when I talked to my PA on Monday she didn't know what those were. I didn't even know they exsisted and mouth sores can be a real big problem for chemo patients. She is going to share the tooth brush and info I shared with the doctors in the office. So my Auntie E. has contributed more than just to my treatment and will be helping others. Love you.
I also got a letter yesterday from my lab stating that Dr. Barth had these other things tested on my tumor tissue. I wasn't aware he had other stuff tested besides the oncotype dx test and because I just got the letter, I didn't know if he even had the results back. So I asked the nurse to check. We all got busy with other stuff and well I forgot and so did she. But, I'll be seeing him after the 6th of July and I know he will have the results by then so, I'll just ask him. He's the only one that can go over that stuff with me anyway so no biggie.
Chris sat with me most of the time today. Dad sat with me the first hour and then here comes Chris. He was a little outraged because he had gone up to the receptionist, who is really nice and loves my hats, and said can I go into the back and sit with my mother and she reply no you can't go be with your mother. Well, my kid being literal said OK and then she said of course you can go back and be with your mother go on back. He was outraged. He said ok I knew then that she was messing with me but I don't think that was nice. When someone wants to be with their mother people shouldn't mess around like that. I said well, I know her and she was probably just trying to lighten the mood by making an attempt to mess with you and she didn't leave you hanging long before she told you go on back. He said yea but, I thought she was serious until she said of course you can go back and I didn't like it. All I can say is good thing she didn't drag it out or mess with the kid long because I think he was probably on the verge of blowing after he said OK. I think an explosion was most likely in the makings. I can't blame him.
So beside the extra poke which I can tell is not going to leave a bruise or anything because she yanked it right back out when it wasn't going to work and didn't try to poke around thank God. It was a good round. My kid amazed me again by coming back into chemo land and finding me. Sitting there for a good three hours while watching his mother get poison poured into her. And when they started the chemo that I have had the reaction to he was watching the clock and every ten or fifteen minutes he would ask me if I felt anything. He also noticed the small air bubbles that sometimes get into an IV. He somehow instinctively knew that could be a bad thing and he panicked a bit until I explained that small bubbles don't do anything it has to be the whole line of air going in to create a bubble in your blood that can cause trouble. He still didn't like it and when one would form he would watch it go down the line and poof into my vein. Then frown. Yea I had to reassure him a lot. Then my nurse came by and I explained to her his concerns and she took the time to reassure him. He seemed to relax after that. Mom and Dad popped their heads in once in a while to see how it was going. And Dad's timing was good because he came in just as I was unhooked and ready to go.
Got home and I actually fell asleep for about an hour. That's a feat on steroids. Maybe I can actually get some sleep tonight. That usually doesn't happen until Friday night. Off to eat my cheerios and take another dose of Metamucil. And pushing water.
Greet The Day was there. Got a nice foot massage. And as soon as this woman placed her hands on me I knew this was a Reiki person. I said Reiki? She said with surprise yes. I told her I was level 3. We had an awesome energy exchange. At the end she said I received more from you than I gave and she thanked me. Greet the Day is a volunteer program and they do the foot massage for free but, most of the therapist who are trained in oncology massage therapy also have massage jobs. So I asked her where she worked. She told me and said she also does stuff on her own. I told I was going to be having surgery at some point and have a really hard time with it. I asked if she would come to the hospital when I come out of recovery and give me a treatment and she gave me her card and said absolutily she would do this and told me just to call her. I'm going to do this as soon as I have a surgery date and talk to my surgeon. I really think this will help me. Depending on when my surgery is and what time I might also talk to my internist. She is a Reiki master and came and gave me Reiki when I had trouble with my gallbladder surgery. Plus she gave me Xanax and that pulled me out of it. Also my insurance paid for it because she was able to bill it as a hospital visit which it was. So I might do that but, see this woman for an oncology massage before surgery. Look up Greet the Day they have a website and I think its a great organization.
Other great news, no reaction this time. Who knows why. So we were done by 2:30pm but, we didn't start treatment until about 10:30 because I had a list of things to go over with the nurse before we started. So total time for chemo was about 4 hours. Maybe even a little less with the vein search. List of things I went over. Well for starters I gave her one of the GUM toothbrushes that my Auntie E. sent me because when I talked to my PA on Monday she didn't know what those were. I didn't even know they exsisted and mouth sores can be a real big problem for chemo patients. She is going to share the tooth brush and info I shared with the doctors in the office. So my Auntie E. has contributed more than just to my treatment and will be helping others. Love you.
I also got a letter yesterday from my lab stating that Dr. Barth had these other things tested on my tumor tissue. I wasn't aware he had other stuff tested besides the oncotype dx test and because I just got the letter, I didn't know if he even had the results back. So I asked the nurse to check. We all got busy with other stuff and well I forgot and so did she. But, I'll be seeing him after the 6th of July and I know he will have the results by then so, I'll just ask him. He's the only one that can go over that stuff with me anyway so no biggie.
Chris sat with me most of the time today. Dad sat with me the first hour and then here comes Chris. He was a little outraged because he had gone up to the receptionist, who is really nice and loves my hats, and said can I go into the back and sit with my mother and she reply no you can't go be with your mother. Well, my kid being literal said OK and then she said of course you can go back and be with your mother go on back. He was outraged. He said ok I knew then that she was messing with me but I don't think that was nice. When someone wants to be with their mother people shouldn't mess around like that. I said well, I know her and she was probably just trying to lighten the mood by making an attempt to mess with you and she didn't leave you hanging long before she told you go on back. He said yea but, I thought she was serious until she said of course you can go back and I didn't like it. All I can say is good thing she didn't drag it out or mess with the kid long because I think he was probably on the verge of blowing after he said OK. I think an explosion was most likely in the makings. I can't blame him.
So beside the extra poke which I can tell is not going to leave a bruise or anything because she yanked it right back out when it wasn't going to work and didn't try to poke around thank God. It was a good round. My kid amazed me again by coming back into chemo land and finding me. Sitting there for a good three hours while watching his mother get poison poured into her. And when they started the chemo that I have had the reaction to he was watching the clock and every ten or fifteen minutes he would ask me if I felt anything. He also noticed the small air bubbles that sometimes get into an IV. He somehow instinctively knew that could be a bad thing and he panicked a bit until I explained that small bubbles don't do anything it has to be the whole line of air going in to create a bubble in your blood that can cause trouble. He still didn't like it and when one would form he would watch it go down the line and poof into my vein. Then frown. Yea I had to reassure him a lot. Then my nurse came by and I explained to her his concerns and she took the time to reassure him. He seemed to relax after that. Mom and Dad popped their heads in once in a while to see how it was going. And Dad's timing was good because he came in just as I was unhooked and ready to go.
Got home and I actually fell asleep for about an hour. That's a feat on steroids. Maybe I can actually get some sleep tonight. That usually doesn't happen until Friday night. Off to eat my cheerios and take another dose of Metamucil. And pushing water.
Wednesday, June 23, 2010
Hats!
Due to the generosity of a friend (S)., I have three new hats! From the Hat Shop at the Shoreline mall in Long Beach. What a great store! Huge amount of hats in all styles. Bequi was kind enough to chauffeur me to the store and help with picking them out. I got a brown bowler and added a feather, a fedora with some pretty blue stitching on it and a black bucket hat with a floral pattern and sequins on it. I love my hats and the experience was a great pick me up before facing round 4.
The receptionist at my doctor's office loves to see which hat I'm wearing. Now I have some new ones! Just have to decide on which one to wear tomorrow.
The receptionist at my doctor's office loves to see which hat I'm wearing. Now I have some new ones! Just have to decide on which one to wear tomorrow.
Steroid day
Must be the day before chemo because I'm on steroids. Hate these damned things. I'll be up tonight and typer (that's tired and hyper). Pushing water today. Excercising the heck out of the vein. I am able to get it to pop a bit. Hopefully it will be good enough or we will be on a vein search. Metamucil and Cheerios have been on the menu the last couple of days. Well, let's give this thing another try and see if I can stay out of the ER this time.
Monday, June 21, 2010
Dr. Appt. Today
Saw Nicole today. My physician's assistant. It went well. She felt my tumor and was very surprised by how well it had responded. Wow, this has responded amazingly well and we still have one more round to go she said. I told her I could tell it had responded but, wasn't quite sure what I was feeling. She said what they couldn't tell by feeling was how much dead stuff was in there. Anyway she was very encouraged by what she felt. She is arranging to have my MRI scheduled and follow up appointment with Dr. Barth to go over the results then we will go from there. Otherwise she was please with how I'm doing.
She did bring up that I went to the ER this last time and wanted to know what happened. I said well, we were trying to avoid going into constipation so we tried something else. She said and it back fired. I said well yes it didn't work. And she said why did you change from what you did the time before. I hesitated and said well, Dr. Barth wanted me to try not to go into constipation at all and that sounded like a good idea to me. She said oh so it's Dr. Barth's fault. I said shhhh don't tell him. She said are you kidding I would only tell him that if I was standing behind you! So we agreed back to Metamucil and Cheerios for me. Which I started today.
Head update. It didn't break out this time. I got a couple of zits maybe three. But, not the flare up I had before. Nicole feels I won't flare up this time either and was happy by the way its healing. It is looking better.
Count the good stuff, tumor is responding and everyone is surprised by how much, head is healing and I'm feeling good to start number 4.
Let's hope its the last one. If not at least it will be only two more.
She did bring up that I went to the ER this last time and wanted to know what happened. I said well, we were trying to avoid going into constipation so we tried something else. She said and it back fired. I said well yes it didn't work. And she said why did you change from what you did the time before. I hesitated and said well, Dr. Barth wanted me to try not to go into constipation at all and that sounded like a good idea to me. She said oh so it's Dr. Barth's fault. I said shhhh don't tell him. She said are you kidding I would only tell him that if I was standing behind you! So we agreed back to Metamucil and Cheerios for me. Which I started today.
Head update. It didn't break out this time. I got a couple of zits maybe three. But, not the flare up I had before. Nicole feels I won't flare up this time either and was happy by the way its healing. It is looking better.
Count the good stuff, tumor is responding and everyone is surprised by how much, head is healing and I'm feeling good to start number 4.
Let's hope its the last one. If not at least it will be only two more.
Sunday, June 20, 2010
Vein
Well "the" vein they like is not looking good. Its has bruising on it. Not sore though. I'm working it using this squeezing thing I have but, I can't get it to pop up. Shit. Well its not Thursday yet.
Wednesday, June 16, 2010
Monday, June 14, 2010
Scaring the Newbies
When I went for my iron infusion this past Thursday, it was done at the same place I go to have chemo. And it was done where I have the chemo done. Since we weren't going to be there long I didn't sit in one of the chemo booths but, went ahead and sat in chemo row. Now the booths are these semi private blocked off cubicles with a lounging chair and a 2nd chair for your support person to sit in. But, its has windows on the sides and is pretty much open so the nurses can see you but you get a sense of being somewhat blocked off from others. Chemo row is just a row of lounge chairs side by side. No one else that morning was sitting in chemo row so dad and I sat in two of the chairs. I wasn't paying attention, just sat down. Now after it was done I had to sit there for 30 minutes to make sure I didn't have a reaction and it was then that I realized I had chosen a chair that was right in line with the door you go through to enter. So I was the first thing you see when someone came in. I became amused by the reaction of people because I had my hat off (its more comfortable to sit in a reclining chair without a hat on). Now old cancer veterans or people who had started treatment would see me, make eye contact and I would smile and they would smile back. But, the couple of newbies that were coming in for doctor appointments. Oh that was hard. They would glance and glance away but then need to look back. No smiles and you could see horror and smell fear. Yea baby here's your future. Yep I was scaring the newbies. I was their reality about to happen. Bald head. IV stuck in the arm.
I won't be sitting in the on display chair again.
I won't be sitting in the on display chair again.
Park
I'm venturing out into the world today. And its not to a doctor's office! Going to park. Some of my friends are coming. Should be good for my emotional health.
Sunday, June 13, 2010
My Head
Aside from folliculitis, I have enjoyed my baldness. I truly have. No bad hair days. Am able to get ready in five minutes and have fabulous hats to wear. Plus it has made applying make up a whole new experience. Applying make up when you have no hair is cool. You just have your whole face and huge eyes to play with.
So I'm enjoying my baldness but, my head? My head is another story. When my beautiful Bequi lovingly buzzed my head I was left with a dark buzz of hair. Then most of that fell out before round two. Even more after round two. And now, well now I'm pretty much bald but, not completely. What is left is not a lot, very light in color and various lengths. Some of my "hair" is probably an 1/8 of an inch and other but less is maybe 1/2 inch at most. But you can see my whole scalp. So its a bald head with fuzzy sparse hair bits and dark spots all over it where the folliculitis was.
So I'm looking at my head the other night and burst out, my God my head looks like the head of someone in a movie who is about 112 and dying. You know they always have a bald head with liver spots all over it and sparse hair sticking up. They are laying on the death bed and whisper come closer, come closer and they whisper something but no one can ever hear them and we never know what it is they say. Why? Why do give the 112 year old dying person a chemo head?
Ok so at first my mom was horrified at my outburst and told me not to say that but, then well, she got to laughing pretty hard.
So, I'm not happy with my head and I want to razor shave it and ditch the 112 year old dying person head. But, I don't want to risk another break out so I'm not doing it.
I have decided that when this is over and my hair starts to grow back in, I'm keeping it buzzed until I have a thick covering on my head and then I'll let it grow out. Hopefully that will help it grow out even in length and thickness. I don't want my hair to look like its falling out when its growing back in!
So I'm enjoying my baldness but, my head? My head is another story. When my beautiful Bequi lovingly buzzed my head I was left with a dark buzz of hair. Then most of that fell out before round two. Even more after round two. And now, well now I'm pretty much bald but, not completely. What is left is not a lot, very light in color and various lengths. Some of my "hair" is probably an 1/8 of an inch and other but less is maybe 1/2 inch at most. But you can see my whole scalp. So its a bald head with fuzzy sparse hair bits and dark spots all over it where the folliculitis was.
So I'm looking at my head the other night and burst out, my God my head looks like the head of someone in a movie who is about 112 and dying. You know they always have a bald head with liver spots all over it and sparse hair sticking up. They are laying on the death bed and whisper come closer, come closer and they whisper something but no one can ever hear them and we never know what it is they say. Why? Why do give the 112 year old dying person a chemo head?
Ok so at first my mom was horrified at my outburst and told me not to say that but, then well, she got to laughing pretty hard.
So, I'm not happy with my head and I want to razor shave it and ditch the 112 year old dying person head. But, I don't want to risk another break out so I'm not doing it.
I have decided that when this is over and my hair starts to grow back in, I'm keeping it buzzed until I have a thick covering on my head and then I'll let it grow out. Hopefully that will help it grow out even in length and thickness. I don't want my hair to look like its falling out when its growing back in!
Saturday, June 12, 2010
Wussies
A friend emailed me today and she got me thinking. So I have to give credit for the inspiration of my post today to J. Thank you and hugs.
Cancer like so many other things in life is just one big giant "why?". Why
did I get it, is there a reason, is this suppose to lead me somewhere, blah
blah blah. Ok here's the deal for me. As humans we get cancer. We all get
it. We all make cancer cells. Its a matter of if your body is able to
recognize it and kill it like its suppose to do. How many people die with
undetected cancer in their body? How do we know, its undetected but I suspect
its a lot considering that a male that makes it to the age of 80 is pretty
much 100% going to have prostate cancer. (Hey the women have been grabbing their boobs through reading this blog, about time the guys read something that made them grab whats near and dear to them). They are not going to die of it
but, they are going to have it. So on that happy horse shit note, having
cancer, is much like other life experiences in that much of it is what you
make of it. Like life much of dealing with this cancer I don't have much
choice in, but I do have choices. I still have loads of choices about
attitude, humor, how I treat and interact with those around me. I already
knew I had good people in my life, but one of the beautiful things I've
gotten to see through this, is I've gotten to watch those people shine.
Shine with the out pouring of love and compassion.
I don't have wussies for friend or family.
Cancer like so many other things in life is just one big giant "why?". Why
did I get it, is there a reason, is this suppose to lead me somewhere, blah
blah blah. Ok here's the deal for me. As humans we get cancer. We all get
it. We all make cancer cells. Its a matter of if your body is able to
recognize it and kill it like its suppose to do. How many people die with
undetected cancer in their body? How do we know, its undetected but I suspect
its a lot considering that a male that makes it to the age of 80 is pretty
much 100% going to have prostate cancer. (Hey the women have been grabbing their boobs through reading this blog, about time the guys read something that made them grab whats near and dear to them). They are not going to die of it
but, they are going to have it. So on that happy horse shit note, having
cancer, is much like other life experiences in that much of it is what you
make of it. Like life much of dealing with this cancer I don't have much
choice in, but I do have choices. I still have loads of choices about
attitude, humor, how I treat and interact with those around me. I already
knew I had good people in my life, but one of the beautiful things I've
gotten to see through this, is I've gotten to watch those people shine.
Shine with the out pouring of love and compassion.
I don't have wussies for friend or family.
Friday, June 11, 2010
Went well
Its done. Over. Got my iron infusion that I was so dreading. Why? I don't know compared to the chemo its simple. I just didn't want to go, but, I did. It went well. No problems with the IV. No reaction.
Was so relieved after that my appetite kicked in. Ate pretty good today. Well, compared to the last week I did. Feeling better tonight.
Plus I got a really nice surprise. A phone call. From some of my musical and talented friends. And the guys played me my favorite song that they do. The Weight. I just love the way they do this song.
So a big thanks to Bob and Chris and a extra hug to my Bequi for making the call and holding the phone so professionally so I could hear them clearly.
It was a much needed lift.
Was so relieved after that my appetite kicked in. Ate pretty good today. Well, compared to the last week I did. Feeling better tonight.
Plus I got a really nice surprise. A phone call. From some of my musical and talented friends. And the guys played me my favorite song that they do. The Weight. I just love the way they do this song.
So a big thanks to Bob and Chris and a extra hug to my Bequi for making the call and holding the phone so professionally so I could hear them clearly.
It was a much needed lift.
Thursday, June 10, 2010
Its Thursday
Well, the appetite was short lived. Thursdays after chemo is my lowest day. No energy and no appetite. Must be my nadir. That's the name for the lowest blood count day. Or it just might be my shitty day. Thought I would get out of it with the appetite surge yesterday but no.
Forcing food. Forcing water as I want to be hydrated for tomorrow. Exercising vein which is popping up nicely so should be good. Its all I can do.
But, I don't wanna go!
I'm buying a new hat.
Forcing food. Forcing water as I want to be hydrated for tomorrow. Exercising vein which is popping up nicely so should be good. Its all I can do.
But, I don't wanna go!
I'm buying a new hat.
Wednesday, June 9, 2010
Appetite
I have an appetite. I woke up this morning hungry. Now this usually doesn't happen until Friday morning. My daddy made me my crepes, which is the first thing of any substance that I feel like eating when my appetite returns and they were yummy.
Bowels are still rumbling around but nothing out of control. Just don't trust not being near the toilet. Mostly its gas. Guts are just gassy and its escapes through the attic and the basement.
Friday I go for my second and last iron infusion. Another IV. I'm just not in the mood. A poke I could handle. But those IV are not the same thing as a poke. Iron has to be delivered by IV although it takes a minute. I know, but they got to make sure it goes into a vein. The only way to do that is by IV. For those who are curious, you set up an IV, the needle is in the vein and you can make sure by checking for good blood return. Now if you want to impress someone who is setting an IV when they are done ask, are you getting good blood return? Oh that impresses the hell out of someone who has set up your IV and it let's them know you know how the heck an IV works. Ok so how to check for blood return? What does that mean? The needle is hooked to a tube and blood should return up that tube. If not, its not in the vein or if its really slow, then it doesn't have "good" return. So next time (and I hope there is not one for anyone) you have to have an IV, through out "are you getting good blood return?" and make someone's day.
Pushing water. Need to be good and hydrated. More importantly I need to be good and hydrated for Friday. Makes getting the IV in easier.
Off to find something to eat and I need to take a walk.
Bowels are still rumbling around but nothing out of control. Just don't trust not being near the toilet. Mostly its gas. Guts are just gassy and its escapes through the attic and the basement.
Friday I go for my second and last iron infusion. Another IV. I'm just not in the mood. A poke I could handle. But those IV are not the same thing as a poke. Iron has to be delivered by IV although it takes a minute. I know, but they got to make sure it goes into a vein. The only way to do that is by IV. For those who are curious, you set up an IV, the needle is in the vein and you can make sure by checking for good blood return. Now if you want to impress someone who is setting an IV when they are done ask, are you getting good blood return? Oh that impresses the hell out of someone who has set up your IV and it let's them know you know how the heck an IV works. Ok so how to check for blood return? What does that mean? The needle is hooked to a tube and blood should return up that tube. If not, its not in the vein or if its really slow, then it doesn't have "good" return. So next time (and I hope there is not one for anyone) you have to have an IV, through out "are you getting good blood return?" and make someone's day.
Pushing water. Need to be good and hydrated. More importantly I need to be good and hydrated for Friday. Makes getting the IV in easier.
Off to find something to eat and I need to take a walk.
Fighting?
Since I was diagnosed with cancer, its seems every time I turn the TV on there is something about "fighting" cancer on. Ad, show or something. Honestly, I didn't get it. I didn't feel like I was "fighting" cancer. I have a disease and I'm getting treatment. But, I didn't feel like I was "fighting".
Well, I'm done. If I could run away for a even a few weeks and come back to resume all this, I would. Yea a nice little break would be great right now. But, I can't. And right now I'm pumped up on drugs and feel crappy so my emotions and head are not in the right place. But, I get it. I finally get it now. This will pass by Friday and I'll feel human again and that's when I'll start eating good and exercising like crazy and getting myself in shape and ready for round four. Hmmmm sounds like preparing for a fight.
So yea, I'm fighting cancer. Why did I deny that? What scared me? A fight implies there will be a loser. Ah, there's the kernel of fear.
Well, I'm done. If I could run away for a even a few weeks and come back to resume all this, I would. Yea a nice little break would be great right now. But, I can't. And right now I'm pumped up on drugs and feel crappy so my emotions and head are not in the right place. But, I get it. I finally get it now. This will pass by Friday and I'll feel human again and that's when I'll start eating good and exercising like crazy and getting myself in shape and ready for round four. Hmmmm sounds like preparing for a fight.
So yea, I'm fighting cancer. Why did I deny that? What scared me? A fight implies there will be a loser. Ah, there's the kernel of fear.
Saturday, June 5, 2010
New Bowel Management
Failed. Failed big time. Was at the ER from 3am to 9am getting straighten out. Ok so my doc wanted me to try to avoid constipation all together. Bless him for that but, I just don't think that's they way its going to work.
So here's what went down. Senokot like he told me to. Did nothing but give me a progressive gut ache through out the day. Did get some poo to pass but only with the help of glyceryn suppositories. And it was rabbit pellets at best. So by 9pm I go to the Miralax. That just put me over the edge into unbearable gut ache and it made me sick. So now I'm throwing up Miralax, can't poo and have the gut ache from hell. My mom is trying to get me to walk around to get things to move. Which I do but, doesn't produce much movement at all. And I'm throwing up and getting more and more dehydrated. I'm in trouble. Mom says do you think you should go to the ER? Yes but, I can't with the gut ache from hell. Time for the fleets enema. So off dad goes to get one. Now this time I used less that 1/4 of the enema. I don't even know if it was that much. This was smart. It was just enough to move it out, but didn't give me turbo charged diarreah. But, I'm in trouble because I'm dehydrated and still throwing up. So off to the ER we go at 3am. IV. Two liters of saline solution and reglan for the nausea and I'm straightened out. Got some diarreah but, infrequent so right now I'm not doing anything about it. Came home took my emend for nausea, my atvian for nausea and anti anxiety and then crashed. We all crashed.
Chris and my dad went to the ER with me. My mom is my primary care giver at home and I like her staying away from the ER as there are nasty things to be picked up there. Plus she was already up most of the night with me. But, I could tell she felt bad about not going.
Chris did great. I have a great kid. Told him he could leave the room when they set up the IV but he didn't. I don't think he watched, I don't watch. But, he hung in there. Fussed with my blankets and pillow. And read his book. Kept his cool but nothing too exciting was going on.
A part of me hates just hates that he is having to experience this but, he is learning so much. Things that can only be learned by experience. How a hospital works. He knows now the first thing they want is ID and health insurance card. He got it out of my wallet for me and took care of it. Put it all back and became the watcher of my purse for the evening.
When we got home after we all woke up, I asked him if he was scared tonight. He said no, then well a little. I told him its ok to be scared when someone you love is sick. I've seen my mom sick and have been scared its ok. You can be scared and still get what you need to get done done.
With the constipation done, I'm usually over the worst part. Fatigue and no appetite to come but, I know now that by Friday that will pass.
And it came to pass. Favorite Bible verse.
So here's what went down. Senokot like he told me to. Did nothing but give me a progressive gut ache through out the day. Did get some poo to pass but only with the help of glyceryn suppositories. And it was rabbit pellets at best. So by 9pm I go to the Miralax. That just put me over the edge into unbearable gut ache and it made me sick. So now I'm throwing up Miralax, can't poo and have the gut ache from hell. My mom is trying to get me to walk around to get things to move. Which I do but, doesn't produce much movement at all. And I'm throwing up and getting more and more dehydrated. I'm in trouble. Mom says do you think you should go to the ER? Yes but, I can't with the gut ache from hell. Time for the fleets enema. So off dad goes to get one. Now this time I used less that 1/4 of the enema. I don't even know if it was that much. This was smart. It was just enough to move it out, but didn't give me turbo charged diarreah. But, I'm in trouble because I'm dehydrated and still throwing up. So off to the ER we go at 3am. IV. Two liters of saline solution and reglan for the nausea and I'm straightened out. Got some diarreah but, infrequent so right now I'm not doing anything about it. Came home took my emend for nausea, my atvian for nausea and anti anxiety and then crashed. We all crashed.
Chris and my dad went to the ER with me. My mom is my primary care giver at home and I like her staying away from the ER as there are nasty things to be picked up there. Plus she was already up most of the night with me. But, I could tell she felt bad about not going.
Chris did great. I have a great kid. Told him he could leave the room when they set up the IV but he didn't. I don't think he watched, I don't watch. But, he hung in there. Fussed with my blankets and pillow. And read his book. Kept his cool but nothing too exciting was going on.
A part of me hates just hates that he is having to experience this but, he is learning so much. Things that can only be learned by experience. How a hospital works. He knows now the first thing they want is ID and health insurance card. He got it out of my wallet for me and took care of it. Put it all back and became the watcher of my purse for the evening.
When we got home after we all woke up, I asked him if he was scared tonight. He said no, then well a little. I told him its ok to be scared when someone you love is sick. I've seen my mom sick and have been scared its ok. You can be scared and still get what you need to get done done.
With the constipation done, I'm usually over the worst part. Fatigue and no appetite to come but, I know now that by Friday that will pass.
And it came to pass. Favorite Bible verse.
Thursday, June 3, 2010
Pills
Today I took:
1 Emend-anti nausea
2 4 mg steroids-for chemo side effects
1 Xanax .5 mg- anti anxiety-not doing chemo sober and counter acts the hyper from steroids
2 Tylenol-combat cytoxan headache
2 more 4 mg steroids
1-Zofran- anti nausea
1 Prilosec-anti acid keeps stomach acid down
2-Senokot-hopefully will keep constipation at bay
1 .5mg Ativan-anti nausea and anti anxiety
1 .5mg Xanax because I'm still too hyper to go to sleep and I'm tired
Total: 14 pills.
Dang I feel like a junkie.
1 Emend-anti nausea
2 4 mg steroids-for chemo side effects
1 Xanax .5 mg- anti anxiety-not doing chemo sober and counter acts the hyper from steroids
2 Tylenol-combat cytoxan headache
2 more 4 mg steroids
1-Zofran- anti nausea
1 Prilosec-anti acid keeps stomach acid down
2-Senokot-hopefully will keep constipation at bay
1 .5mg Ativan-anti nausea and anti anxiety
1 .5mg Xanax because I'm still too hyper to go to sleep and I'm tired
Total: 14 pills.
Dang I feel like a junkie.
Chemo round 3
Had a different nurse today. No Rachel. Although she did come by and talk to me for a while to see how things were going. Now the new nurse today Angela? I think was her name I liked her. My dad likes Rachel better. Difference Rachel is the head honcho there. You will see all the other nurses deffer to her and ask her questions. She is a take charge and here is what we are doing. She is great for a first or second time chemo patient which I think I figured out today is her primary job. Now I've had 2 rounds I know what the score is so I got Angela. She did a great job in setting up my IV. Didn't hurt much. She got good blood return which is first thing I asked her. She took my vitals and we talked about Femara which I found out is not what I'm having. I think I read about it. I'm getting Feraheme. Which is the IV delivered iron. She didn't know Dr. Barth wanted me to have this. She said well we don't have approval from your insurance. We can get that in a couple of days and then administer it. Well, no way in my book. That's another poke. I'm set up and ready to go. I'm going through an extra poke for the insurance? No way. So I tell her look Dr. Barth wants me to have this no matter what. If the insurance won't pay for it, then I will because this isn't an optional thing. But, I'm having the dose today. So she went to talk to Rachel and I hear her say she wants it today no matter what and is willing to pay cash. Rachel says oh her insurance will cover it no problem don't worry about it. She comes back and says we are going to call and try to get an approval over the phone if we can't then we will have someone from billing come up to have you sign something saying you will be responsible for paying for it. I said that's fine as long as I get it today.
So what went on. She gave me the taxotere first as that's the chemo I'm not allergic to. It ran threw in about an hour. No problems. But she only set up the chemo. The last two times I've had chemo, Rachel set up and piggy backed a saline solution to the IV. So I had chemo and hydration going into me at the same time. I wanted that. Dad wasn't happy that she didn't do this. I said look she's coming back in a minute (I had asked her for a copy of my blood work and my oncotype dx test and she was off getting these for me) and I'll talk to her about it. When she got back I told her in the past I get an piggy back hydration IV. She asked me do you want that this time? I said yes. She asked me what size bag the small one or large one. I pointed to one I saw someone else had and said that size. She said no problem I'll get that for you. And she did. So I was fine with it. She asked me if I needed the tylenol for the cytoxan rather than just giving it to me like Rachel did. I was fine with this. She was just more along the lines of letting the patient call more of the shots. Then the cytoxan came next. Now this time I'm paying attention and about 30 minutes into it I can feel the start of the smog breathing deal. I raise my hand and she and Rachel come running over. I said yea the smog breathing thing is just starting. Rachel asks me do you have tightening of the chest. I say yes. Here's the deal with that, it really doesn't feel like tightening of the chest but breathing in deep and feeling like a smoggy day. I don't know if that is exactly tightening of the chest but, when I say yes they turn off the chemo which is what I need them to do. So I say yes. They turned it off for about 10 minutes and it went away. They started up again and it didn't come back. It took 3 hours for this one to run through so a total of four hours for chemo today. Much shorter than the 7 hours it took last time. Then it was time for Feraheme, iron infusion. Now out comes a huge syringe of the stuff. Takes one minute for her to inject this into the IV as this has to be administered through the IV. Thank goodness I really wouldn't want that much stuff injected straight into my arm or butt. Now she tells me you need to sit her for about 15 minutes as you may have a reaction. Sweet Mother of God is there anything you can not be allergic to? Apparently not. I ask what reaction am I looking for here? She says oh you'll know. If you feel any different just let me know and it will happen in the first 15 minutes after that you will be fine. Well, that was a fun 15 minutes feeling like a time bomb about to go off. Nothing happened.
Now for more fun stuff. Tomorrow I go for my neulestra shot at 3pm. Really this shot is no big deal but boost my white blood cells. Next Friday I get to go back for my second infusion of the Feraheme. Dr. Barth told me I would be getting two doses but for some reason I figured they would be both today. Wrong. Today and then 3 to 8 days later for the second. I chose the 8th day because that's the day I start to feel human again after chemo. So I'll go back on the 11th. IV will be setup, blood drawn and then iron infusion. Now my iron is just a little below what it should be so they feel this first infusion will put me into the right range but this treatment is done in two doses. But if this first fusion does put me in the good range then I won't have to go back a week later for a blood drawn to see if the second one put me there because they will know the first one did. This will mean one less poke. I'm all for less pokes at this point.
So overall I would say this day went well. 7 hours down to 4 is much less tiring. And the reaction stopped faster. Yes I would say the chemo infusion was a big improvement and went well today.
Now to see if the bowels go better.
I might not be blogging for the next few days, but if the bowels go better you might see something here then. Don't worry if you don't see anything for a few days, but feel free to email mail me with any concerns. I'll try to check those.
Love to all.
So what went on. She gave me the taxotere first as that's the chemo I'm not allergic to. It ran threw in about an hour. No problems. But she only set up the chemo. The last two times I've had chemo, Rachel set up and piggy backed a saline solution to the IV. So I had chemo and hydration going into me at the same time. I wanted that. Dad wasn't happy that she didn't do this. I said look she's coming back in a minute (I had asked her for a copy of my blood work and my oncotype dx test and she was off getting these for me) and I'll talk to her about it. When she got back I told her in the past I get an piggy back hydration IV. She asked me do you want that this time? I said yes. She asked me what size bag the small one or large one. I pointed to one I saw someone else had and said that size. She said no problem I'll get that for you. And she did. So I was fine with it. She asked me if I needed the tylenol for the cytoxan rather than just giving it to me like Rachel did. I was fine with this. She was just more along the lines of letting the patient call more of the shots. Then the cytoxan came next. Now this time I'm paying attention and about 30 minutes into it I can feel the start of the smog breathing deal. I raise my hand and she and Rachel come running over. I said yea the smog breathing thing is just starting. Rachel asks me do you have tightening of the chest. I say yes. Here's the deal with that, it really doesn't feel like tightening of the chest but breathing in deep and feeling like a smoggy day. I don't know if that is exactly tightening of the chest but, when I say yes they turn off the chemo which is what I need them to do. So I say yes. They turned it off for about 10 minutes and it went away. They started up again and it didn't come back. It took 3 hours for this one to run through so a total of four hours for chemo today. Much shorter than the 7 hours it took last time. Then it was time for Feraheme, iron infusion. Now out comes a huge syringe of the stuff. Takes one minute for her to inject this into the IV as this has to be administered through the IV. Thank goodness I really wouldn't want that much stuff injected straight into my arm or butt. Now she tells me you need to sit her for about 15 minutes as you may have a reaction. Sweet Mother of God is there anything you can not be allergic to? Apparently not. I ask what reaction am I looking for here? She says oh you'll know. If you feel any different just let me know and it will happen in the first 15 minutes after that you will be fine. Well, that was a fun 15 minutes feeling like a time bomb about to go off. Nothing happened.
Now for more fun stuff. Tomorrow I go for my neulestra shot at 3pm. Really this shot is no big deal but boost my white blood cells. Next Friday I get to go back for my second infusion of the Feraheme. Dr. Barth told me I would be getting two doses but for some reason I figured they would be both today. Wrong. Today and then 3 to 8 days later for the second. I chose the 8th day because that's the day I start to feel human again after chemo. So I'll go back on the 11th. IV will be setup, blood drawn and then iron infusion. Now my iron is just a little below what it should be so they feel this first infusion will put me into the right range but this treatment is done in two doses. But if this first fusion does put me in the good range then I won't have to go back a week later for a blood drawn to see if the second one put me there because they will know the first one did. This will mean one less poke. I'm all for less pokes at this point.
So overall I would say this day went well. 7 hours down to 4 is much less tiring. And the reaction stopped faster. Yes I would say the chemo infusion was a big improvement and went well today.
Now to see if the bowels go better.
I might not be blogging for the next few days, but if the bowels go better you might see something here then. Don't worry if you don't see anything for a few days, but feel free to email mail me with any concerns. I'll try to check those.
Love to all.
Wednesday, June 2, 2010
Chemo brain
I just wanted to acknowledge that I just re-read my last post and man are there some spelling errors and other grammar issues. Spell check did not completely do its job. I'm not correcting anything as I know all of you are smart enough and don't have chemo brain and can figure out pretty easily what I'm saying.
Chemo brain is an actual phenomenon. You can look it up on the Mayo clinic. My first real experience of it was a couple of days ago when for the life of me I couldn't remember my house address. The numbers. Nope. Had to ask my dad.
It will go away.
Chemo brain is an actual phenomenon. You can look it up on the Mayo clinic. My first real experience of it was a couple of days ago when for the life of me I couldn't remember my house address. The numbers. Nope. Had to ask my dad.
It will go away.
The good and The bad
Got back from my oncologist. Ok here is a lesson in what a oncotype dx test is and how it is used. An oncotype dx test is a test for the risk of recurrence of cancer and the benefits of chemo. They test 21 breast cancer genes that they know if over expressed are a valid indicator of recurrence. Then they mathematically put this into a score. So here's the deal, the scores run from 0 to a 100. A score of less than 18 is a low risk of recurrence around 5% and you gain very little from having chemo. A score of 18 to 31 is medium risk and this is the big gray area as to if chemo would benefit you or not. Reason is that they don't want to error on the bad side so people in this category usually get chemo and are left out of clinical trials of not having chemo to see what the difference is because well, who is going to be willing to do fore go chemo if its not sure if you are going to benefit or not. Anything over 31 is considered high risk of reoccurance and the benefits are huge with chemo.
So drum roll here, my score a whopping 73. Shit. Without chemo my chances for reoccurance is 40%. Breath. Good news is that with the chemo my chances of reccurence is reduced down to less than 10%, closer to about 8%. Yea we'd all like to see a chance of 0% but you just don't get that with cancer. So I like to look at it as a 92% chance of not having a recurrance. And I should say this is the reccurence rate at 10 years. Years 1 to 9 is less than that. Strange I know but, something else I have found out is that with breast cancer unlike other cancer the longer out you go without a reoccurance, they higher your chances are for a reoccurance. Go figure.
So what does all this mean to me? I don't care if I had a score of 5 there was no way I was fore going the chemo because its agressive. Grade 3. I already knew my score was going to be above 31 because its so darn agressive. Typically its the low grade cancers that score low. Not always but, usually.
So let me throw some good news in here. The news I had to explain to my dad in the car because he was down in the dumps after hearing the 73 score. Not sure what he heard after that because we stood in the examination room for a long time after the doctor left looking at my results on the very large computer screen that hangs on the examination wall. Since I had read about this test up the ying yang I knew exactly what it said and went over it again with my dad. In the car I broke the good news to him which is that its the high scoring, agressive cancers that respond to chemo the most. Slow growing ones. Not so much. Its the high grade agressive cancers that get the shot at the 27% chance that this thing will pathologically go away.
More good news. Yea we all like good news. My tumor has responded in Dr. Barth's very words "remarkable well, after two rounds it has responded the most it possibly can". And he took his time feeling around. Yea I can tell its smaller but it didn't mean much to me because I couldn't really tell how much. After two needle biopsies everything was so swollen for so long I couldn't tell if it was shrinking or if just the swelling was going down. And I couldn't really remember exactly what it felt like before because it was so long ago. So its responding and its responding the best it possibly can. It confirms my decision to have the chemo first.
So what now. Yes we have more of a game plan in place now. I will have round 2 tomorrow. Round 3 on the 24th. I will have a MRI sometime during the week of 4th of July either on the 5th, 6th or 7th.
If nothing shows up on the MRI, off to surgery I go. Now I know that the MRI can only detect something 5mm or larger so there still could be something small in there. Whatever is removed will be sent to be biopsy. If there is cancer left, Dr. Barth will be running test on it. It will mean this is the cancer cells that were resistant to the chemo I had. He will run test to see if the remaining cancer is responsive to other types of chemo and I will have two more rounds of chemo after surgery. Because my oncotype dx score is so high, I would benefit from this and give me the best chances at a lower reoccurance.
If they can see something on the MRI, Dr. Barth said he would want to do two more rounds of chemo before surgery. He didn't mention another needle biopsy but, I'm no dummy and I know if they can see it on the MRI, its big enough to be needle biopsy. And how else is he going to tell what chemo it would respond to but to do a needle biopsy and test it. Then we could tell how much the remaining cancer responds.
So what to hope for here? Hoping its completely gone. If they can't see anything on the MRI, I go to surgery, if the biopsy comes back with no cancer (that's my 27% shot here) then no additional chemo needed. And I get to put that dragon to bed. Ok so that's what I'm praying for but, if the damned thing doesn't completely respond and doesn't completely die, then crazy me is hoping that it is big enough to show up on the MRI so that we have something to see if the additional two rounds do the trick. In other words if all the cancer doesn't respond to this chemo then I want another chance at seeing if it will completely go away with the additional two rounds. I didn't tell Dr. Barth this because I think he is already wondering about how I think. And here is why:
I talked to him about the lymph node removal. I said I'm assuming that regardless of response that a senital node biopsy will be performed. He said yes because metal tumor markers are in place Dr. Guerra (my surgeon) will be able to inject the blue dye and detect the sentinal node. It will be removed and sent off for biopsy. It won't be biopsied during surgery because we already know I don't have any gross lymph node involvement because nothing showed up on the three scans I had done of my lymph nodes. What would be there would be microscopic. He also said he would be extremely surprised if anything showed up in the sentinal node because my tumor has responded so well that micorscopic cancer is going to be killed off. He seems pretty darn sure of this. So I said ok so I get to keep my lymph nodes. That is very important to me. I really want to keep those because you need them. He was thrown for a loop with that announcement. He actually sat there quiet for a minute. Then he says that is an unusual perspective. (I wanted to say that's because I don't think like normal people but I didn't want to scare him that much) He went on to say I think you also might have some miss information. (I didn't) He says we don't take out all the lymph nodes anymore. We haven't been doing that for about 55 years. You have three tiers on lymph nodes and if there was gross cancer involvement in the sentinal node then the first tier of lymph nodes would be removed which would involve about 20 nodes but, we have at least a 100 nodes and we know that removing 20 doesn't effect your immune system. We know that for sure. Ok. That's nice and I knew that. I didn't say anything because he had confirmed for me that the whole lymph node is a non issue for me because mine won't be remove. But what my issue is, is not compromised immune system. I all ready knew it doesn't compromise that but what does happen or could is edema (swelling and water retention, not good) of your arm. You have to really be careful of your arm forever and its my right arm here people. The one I use the most because I'm right handed. I didn't say this to the doctor. What I did ask was so I'm keeping my lymph nodes? And he said yes. Good enough for me.
Oh what will happen if they find mircoscopic cancer cells in my sentinal node? They will widened the range of what is radiated to include my lymph nodes and that will kill any possible microscopic cancer cells that got past the sentinal node but, they will not go in and do any removal because there isn't any gross involvement, we all ready know that from the scans so the radiation (which I'm going to be having anyway because I'm having breast conservation surgery) would take care of it if they find any microscopic stuff.
I also pinned him a down a bit. I test my doctors. And what I found out is this doctor doesn't guess. If he says something its something he is pretty damned sure about. So what I said was given everything we know, from the previous tests and the high oncotype dx test are we leaning towards a high possibility that I will be having two additional rounds of chemo. He didn't say yes and he didn't say no. He just went over the plan again. You are going to have chemo tomorrow and on the 24th. Then you have a MRI. So he wouldn't guess. He wouldn't say probably. I like that. I rather have a doctor that is sure. Or as sure as he can be. Makes me trust him.
So no surgery date as that won't be determined until I have the MRI.
Other news. My iron is low. So tomorrow I'm getting two infusions of Femara (Sp?) which is iron. Nice thing is that it will be given through my IV. Each infusion will take 30 seconds and because I'm going into forced menopause, this will do it for me with iron for the rest of my life. I will not have to take iron supplements for the rest of my life. Hey something good. My low iron problem will be solved as its something I've been taking supplements for.
You just got to count your blessings:
No more iron problems
Tumor responding at the very best it could from 2 rounds
Get to keep my lymph nodes (this is going to make a big difference for surgery too. Less invasive).
Gained more trust in my doctor
Needing chemo was confirmed and is giving me a major benefit (reduces my chances of reoccurance by over 30%)
Overall, not a bad day at the doctors.
Oh and I just remembered Dr. Barth wants me to try a different regime for managing the bowels this time. Senokot which is natural. Ok. And if I don't move the bowels Friday I'm to go to Miralax. Dang it I think that's the stuff that Mac and I talked about that is plastic. I have to look it up. If I don't go on Saturday then I go to Milk of Mag. But, truth is no I won't because that stuff gave me the gut ache from hell. So I'll give it a shot up til the Milk of Mag then its Metamucil and cherios. Which worked, just not real well. Well, I guess well enough to keep me out of the ER but, its was still unpleasant to move the constipated bowels. Dr. Barth wants me to attempt to avoid that all together. So I will give it a shot.
Wow and I spent 45 minutes with my doctor. That was a lot of information.
Chemo tomorrow. I'll get on here tomorrow to up date on any allergy reaction although they will be giving it to me slowly tomorrow taking up the day so I should be fine. Packing a lunch and plenty of snacks.
I think that's all.
I know I will have lots of love, prayers and positive thoughts and energy with me tomorrow and for that I thank each and everyone of you.
Hugs to all.
So drum roll here, my score a whopping 73. Shit. Without chemo my chances for reoccurance is 40%. Breath. Good news is that with the chemo my chances of reccurence is reduced down to less than 10%, closer to about 8%. Yea we'd all like to see a chance of 0% but you just don't get that with cancer. So I like to look at it as a 92% chance of not having a recurrance. And I should say this is the reccurence rate at 10 years. Years 1 to 9 is less than that. Strange I know but, something else I have found out is that with breast cancer unlike other cancer the longer out you go without a reoccurance, they higher your chances are for a reoccurance. Go figure.
So what does all this mean to me? I don't care if I had a score of 5 there was no way I was fore going the chemo because its agressive. Grade 3. I already knew my score was going to be above 31 because its so darn agressive. Typically its the low grade cancers that score low. Not always but, usually.
So let me throw some good news in here. The news I had to explain to my dad in the car because he was down in the dumps after hearing the 73 score. Not sure what he heard after that because we stood in the examination room for a long time after the doctor left looking at my results on the very large computer screen that hangs on the examination wall. Since I had read about this test up the ying yang I knew exactly what it said and went over it again with my dad. In the car I broke the good news to him which is that its the high scoring, agressive cancers that respond to chemo the most. Slow growing ones. Not so much. Its the high grade agressive cancers that get the shot at the 27% chance that this thing will pathologically go away.
More good news. Yea we all like good news. My tumor has responded in Dr. Barth's very words "remarkable well, after two rounds it has responded the most it possibly can". And he took his time feeling around. Yea I can tell its smaller but it didn't mean much to me because I couldn't really tell how much. After two needle biopsies everything was so swollen for so long I couldn't tell if it was shrinking or if just the swelling was going down. And I couldn't really remember exactly what it felt like before because it was so long ago. So its responding and its responding the best it possibly can. It confirms my decision to have the chemo first.
So what now. Yes we have more of a game plan in place now. I will have round 2 tomorrow. Round 3 on the 24th. I will have a MRI sometime during the week of 4th of July either on the 5th, 6th or 7th.
If nothing shows up on the MRI, off to surgery I go. Now I know that the MRI can only detect something 5mm or larger so there still could be something small in there. Whatever is removed will be sent to be biopsy. If there is cancer left, Dr. Barth will be running test on it. It will mean this is the cancer cells that were resistant to the chemo I had. He will run test to see if the remaining cancer is responsive to other types of chemo and I will have two more rounds of chemo after surgery. Because my oncotype dx score is so high, I would benefit from this and give me the best chances at a lower reoccurance.
If they can see something on the MRI, Dr. Barth said he would want to do two more rounds of chemo before surgery. He didn't mention another needle biopsy but, I'm no dummy and I know if they can see it on the MRI, its big enough to be needle biopsy. And how else is he going to tell what chemo it would respond to but to do a needle biopsy and test it. Then we could tell how much the remaining cancer responds.
So what to hope for here? Hoping its completely gone. If they can't see anything on the MRI, I go to surgery, if the biopsy comes back with no cancer (that's my 27% shot here) then no additional chemo needed. And I get to put that dragon to bed. Ok so that's what I'm praying for but, if the damned thing doesn't completely respond and doesn't completely die, then crazy me is hoping that it is big enough to show up on the MRI so that we have something to see if the additional two rounds do the trick. In other words if all the cancer doesn't respond to this chemo then I want another chance at seeing if it will completely go away with the additional two rounds. I didn't tell Dr. Barth this because I think he is already wondering about how I think. And here is why:
I talked to him about the lymph node removal. I said I'm assuming that regardless of response that a senital node biopsy will be performed. He said yes because metal tumor markers are in place Dr. Guerra (my surgeon) will be able to inject the blue dye and detect the sentinal node. It will be removed and sent off for biopsy. It won't be biopsied during surgery because we already know I don't have any gross lymph node involvement because nothing showed up on the three scans I had done of my lymph nodes. What would be there would be microscopic. He also said he would be extremely surprised if anything showed up in the sentinal node because my tumor has responded so well that micorscopic cancer is going to be killed off. He seems pretty darn sure of this. So I said ok so I get to keep my lymph nodes. That is very important to me. I really want to keep those because you need them. He was thrown for a loop with that announcement. He actually sat there quiet for a minute. Then he says that is an unusual perspective. (I wanted to say that's because I don't think like normal people but I didn't want to scare him that much) He went on to say I think you also might have some miss information. (I didn't) He says we don't take out all the lymph nodes anymore. We haven't been doing that for about 55 years. You have three tiers on lymph nodes and if there was gross cancer involvement in the sentinal node then the first tier of lymph nodes would be removed which would involve about 20 nodes but, we have at least a 100 nodes and we know that removing 20 doesn't effect your immune system. We know that for sure. Ok. That's nice and I knew that. I didn't say anything because he had confirmed for me that the whole lymph node is a non issue for me because mine won't be remove. But what my issue is, is not compromised immune system. I all ready knew it doesn't compromise that but what does happen or could is edema (swelling and water retention, not good) of your arm. You have to really be careful of your arm forever and its my right arm here people. The one I use the most because I'm right handed. I didn't say this to the doctor. What I did ask was so I'm keeping my lymph nodes? And he said yes. Good enough for me.
Oh what will happen if they find mircoscopic cancer cells in my sentinal node? They will widened the range of what is radiated to include my lymph nodes and that will kill any possible microscopic cancer cells that got past the sentinal node but, they will not go in and do any removal because there isn't any gross involvement, we all ready know that from the scans so the radiation (which I'm going to be having anyway because I'm having breast conservation surgery) would take care of it if they find any microscopic stuff.
I also pinned him a down a bit. I test my doctors. And what I found out is this doctor doesn't guess. If he says something its something he is pretty damned sure about. So what I said was given everything we know, from the previous tests and the high oncotype dx test are we leaning towards a high possibility that I will be having two additional rounds of chemo. He didn't say yes and he didn't say no. He just went over the plan again. You are going to have chemo tomorrow and on the 24th. Then you have a MRI. So he wouldn't guess. He wouldn't say probably. I like that. I rather have a doctor that is sure. Or as sure as he can be. Makes me trust him.
So no surgery date as that won't be determined until I have the MRI.
Other news. My iron is low. So tomorrow I'm getting two infusions of Femara (Sp?) which is iron. Nice thing is that it will be given through my IV. Each infusion will take 30 seconds and because I'm going into forced menopause, this will do it for me with iron for the rest of my life. I will not have to take iron supplements for the rest of my life. Hey something good. My low iron problem will be solved as its something I've been taking supplements for.
You just got to count your blessings:
No more iron problems
Tumor responding at the very best it could from 2 rounds
Get to keep my lymph nodes (this is going to make a big difference for surgery too. Less invasive).
Gained more trust in my doctor
Needing chemo was confirmed and is giving me a major benefit (reduces my chances of reoccurance by over 30%)
Overall, not a bad day at the doctors.
Oh and I just remembered Dr. Barth wants me to try a different regime for managing the bowels this time. Senokot which is natural. Ok. And if I don't move the bowels Friday I'm to go to Miralax. Dang it I think that's the stuff that Mac and I talked about that is plastic. I have to look it up. If I don't go on Saturday then I go to Milk of Mag. But, truth is no I won't because that stuff gave me the gut ache from hell. So I'll give it a shot up til the Milk of Mag then its Metamucil and cherios. Which worked, just not real well. Well, I guess well enough to keep me out of the ER but, its was still unpleasant to move the constipated bowels. Dr. Barth wants me to attempt to avoid that all together. So I will give it a shot.
Wow and I spent 45 minutes with my doctor. That was a lot of information.
Chemo tomorrow. I'll get on here tomorrow to up date on any allergy reaction although they will be giving it to me slowly tomorrow taking up the day so I should be fine. Packing a lunch and plenty of snacks.
I think that's all.
I know I will have lots of love, prayers and positive thoughts and energy with me tomorrow and for that I thank each and everyone of you.
Hugs to all.
Steroids
Started the steroids today. Will take them today, tomorrow and Friday to counteract side effects from chemo. I hate these things. Hate the way they make me feel. Like I can build a small village. Hyper city. And crabby and irritable. And I get to take them twice a day!
Going to see my oncologist today at 3pm for more test results. Will post those results later.
Chemo is tomorrow so don't worry if I don't post for a few days. Feel free to email me to check in. I'll try to check email but I know I won't be up to blogging most likely.
Oh man I just realized my ears are majorly exposed now with no hair. I think I better get out a Q-tip and clean them.
Going to see my oncologist today at 3pm for more test results. Will post those results later.
Chemo is tomorrow so don't worry if I don't post for a few days. Feel free to email me to check in. I'll try to check email but I know I won't be up to blogging most likely.
Oh man I just realized my ears are majorly exposed now with no hair. I think I better get out a Q-tip and clean them.
Tuesday, June 1, 2010
Two Months
My how time flies when you're having fun.
Its been two months since my diagnosis on April 1st.
Tomorrow I have to take my steroids. I hate those things. Can't imagine anyone taking them to enhance sport performance or muscle mass. Thank God I only have to take them for three days. Go tomorrow to see my oncologist for test results. And then chemo 3 on Thursday. Friday nuelstra shot. Hopefully then I'll be set until the 24th. Oh wait no I won't oncologist wants to see me before each chemo. Going to find out when I can get a surgery date tomorrow. My oncologist said he would coordinate that with my surgeon.
In other breast cancer news, they think they might have discovered/created a vaccine for breast cancer. So far seems to work in mice.
http://timesofindia.indiatimes.com/life/health-fitness/health/DNA-cancer-vaccine-starves-tumours/articleshow/5972144.cms
Its been two months since my diagnosis on April 1st.
Tomorrow I have to take my steroids. I hate those things. Can't imagine anyone taking them to enhance sport performance or muscle mass. Thank God I only have to take them for three days. Go tomorrow to see my oncologist for test results. And then chemo 3 on Thursday. Friday nuelstra shot. Hopefully then I'll be set until the 24th. Oh wait no I won't oncologist wants to see me before each chemo. Going to find out when I can get a surgery date tomorrow. My oncologist said he would coordinate that with my surgeon.
In other breast cancer news, they think they might have discovered/created a vaccine for breast cancer. So far seems to work in mice.
http://timesofindia.indiatimes.com/life/health-fitness/health/DNA-cancer-vaccine-starves-tumours/articleshow/5972144.cms
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