I thought it would be healthy for me to get these things out so I can feel better.
Things that have been upsetting, bothering, annoying and/or hurting me:
1) People who call and all they can talk about is cancer and my treatments.
Example~"Hi CB, how are you feeling? Did I wake you up?"
"No, I wasnt sleeping, just resting. I am feeling OK" (not sure I want to go into detail about whats been bothering me such as this rash and other stuff people dont want to hear thats TMI).
"Oh, you were resting? I shouldnt have bothered you. I'll call you back later then."
"No really, you are not bothering me. If I didnt want to talk I wouldnt have picked up the phone." (wondering if they have now taken offense to this statement).
"Did you have your last treatment yet or is it this week? Was it better than the last treatment?"
"No my last treatment is the 29th but I am not sure if it is going to be delayed due to the reaction I had."
"Oh, thats good, its almost over for you then." (Yeah right, its NEVER over for someone diagnosed with cancer with the fear of recurrence hanging over your shoulder. How I hate when people say this. I think I hate it more than- THINGS WILL GO BACK TO NORMAL WHEN YOU ARE DONE WITH TREATMENT AND YOU CAN GET ON WITH YOUR LIFE. I thought I was living my life RIGHT NOW. Things have been changed in ways people without cancer cannot imagine and they will never be the same. There is a NEW normal and I have to define it myself. I have to define it for me, my DH and my two children)
"Yeah right"
"Did you get your genetic testing results back yet?"
"Yes, I did and it was negative. I am happy about that"
"Thats wonderful, you dont have to worry about that now" (Very dumb statement here because I DO have to worry even though I dont have the genetic markers. I have to worry because of the fact that I am a cancer survivor and the risk of recurrence is always looming. Also just because they didnt find the genetic marker for BrCa1 or 2 they also tell you that they are discovering more genetic markers every day so I might have BrCa3 or 4 if they exist. With more research they will discover more and more which will be helpful for my children and all the children of women with BC).
"Oh, so and so has the gene you know. She's not to concerned right now because she is concentrating on her career. She's only 33 anyway so she has until she's 40 to think about what she is going to do".
"OK, well, cancer is not on a timer that you can set it and plan for it to happen. She should put her health first before her career. I was diagnosed when I was 34 and I did everything to prevent it, I still got it though." (I also wasnt going to say sorry that she has the gene, thats stupid because many people have the gene and dont know it plus why am I sorry? She DOESNT HAVE CANCER. It also makes me feel stupid because she's acting like she's going to be smarter than I was an avoid getting it at such a young age. I did everything in my power to prevent cancer and I also found that lump as soon as I possibly could have thanks to self-breast exam. My lump grew so fast that it wasnt there a month earlier when I did an exam and it was such a fast growing aggresive tumor that it spread to my lymph nodes already in that span of time! Oh but she's going to be smarter than me. If you have the gene you have 87-90% chance that you will get cancer in your life time. Yeah, it sucks but if you know that and can prevent it with a prophlactic mastectomy you can decrease that number to what the normal #'s are for people without the gene)
You get the point here from this example of a conversation with a relative. Sometimes it amazes me how stupid people can be. I do know their intentions are to be nice and comforting but it comes out wrong and annoys the crap out of me. They need to think before they talk.
2) People who constantly tell me to think positive and having that mindset is the best attitude to have because you will heal better and then the cancer has less of a chance at coming back. OK, first of all I know that I have to be positive and I am very positive. I need to be a little negative once in a while, its my right gosh darn it! These people could be talking about anything else with me and they chose this topic. Lets take a guess how many times a cancer patient has heard this, "Now, you know you have to think positive, thats half the battle." I dont disagree with this statement at all. Its very true. I just dont need to hear it 100 million times. The funny thing is that most of the people telling me to be positive are the most negative, pessamistic people around. If I could take a gander I would guess that they themselves would not heed their own advice if they were the ones in my shoes! Yes, its laughable but it annoys me. I would tell these people to look in the mirror, pretend that they have no hair, eyebrows or eyelashes. After that put on makeup that gives them dark circles under their eyes, swollen eyelids, yellow powder on their face or grey depending upon what chemo they were given a few days ago. THEN say to that person in the mirror, "YOU KNOW THE MOST IMPORTANT THING YOU CAN DO FOR YOURSELF IS TO THINK POSITIVE, ITS HALF THE BATTLE. My guess is that they wont say that statement to a cancer patient again any time soon.
3) When I was 1st diagnosed I cant tell you how many people called me to say they were sorry and whatnot. This complaint isnt about them saying they were sorry even though its a bad choice of words but anyway (please dont be offended if any one of you guys said it to me, I dont mean anyone here, I meant my dumb ass relatives who said it like I was dead already or planning my funeral) they could have said it in a different tone of voice OR said, "I am sorry to HEAR about your cancer".
The real complaint I was originally writing about is that people would say, "If there is ANYTHING, I MEAN ANYTHING I can do for you please let me know." Most of the time these statements would come from people I would NEVER ask for anything ever. Not because they arent nice or anything like that but because I dont think they would actually do what I would need them to do PLUS like I said I would never ask them even before I got sick. OK, so say Mary (a fictitious person used as an example), an aquaintance of mine, said this to me. She lives in NY about an hour away and has a full time job and kids of her own to deal with so if I need her to pick up the kids at school one day she would drop everything, including HER job and HER children and do this for me. NO, I dont think so. Remember, she's not a friend of mine but an aquaintance so for her to throw out a statement like, "If there is anything I can do..." is foolish on her part and means nothing. These people need to find something better to say, something that they can stand behind instead of statements they cant. Now I have FRIENDS that I KNOW would do anything for me. My friend J, is like that. If I needed her help, no matter what the reason, she would call in sick to work, leave her son with her Mom or sister, drive over 2 hours to my house from where she lives and do whatever I asked her to do. I know she would do it because she is my friend, has been for many years and has done things similar to that in the past for me as I have for her. She is like my sister. We can go for a few months without hearing from each other due to our crazy schedules and because life is busy for both of us. When we finally do get in touch with one another we pick up where we left off like time never passed between us. Thats the definition of a true friend. Someone who doesnt keep score as to who did what for whom and sh*t like that. I hate that sh*t. People who do that are to into themselves to care about anyone but themselves therefore incapable of having friends. I call them self-serving, self-imortant a-holes who will die alone due to this factor in their meager existance they call their life. Harsh but true.
Well, I know there will be more complaints and I wrote enough for people to read and hopefully not vomit! Actually, I have had a headache all day and I am going to TRY and get some sleep with the help of some pain medicine. I am stressing over the fact that I have my last treatment on Thursday and I am thinking of all the things that can go wrong with this one.
Update on the rash~Its looking good with the use of the cream. Its still itchy but no where near as itchy as it was before. I just hope the chemo doesnt make it come back or get worse but I will keep my hopes up.
Last chemotherapy is on Thursday, only 2 days away. I thought I would be happy and overjoyed over this but I find myself very upset and emotional. I feel like I am on the verge of crying all the time and its driving me crazy. I wish I could learn to meditate and do yoga. So many people say that it helps them relax. I wish I was one of those people. Oh yeah, most of the people that say it helps them dont have cancer either. I wonder if that makes a difference.
Tuesday, June 27, 2006
Saturday, June 24, 2006
Another drug reaction? Can it really be happening? Oh and the kids are both sick!
Didnt sleep much last night due to the "itch" and the heat and humidity. We had a power failure at around 4am and that woke me up because I heard the AC shut down and everything else that runs on electricity shut down also. All I kept thinking about was the food in the fridge going bad and I cringed
I did get back to sleep for a few hours but then had to get up to be at an OT appointment at 10:30am. I decided to stop at the oncologists office first so he could take a look at the rash on my neck again because it had gotten worse. I also had the rash located around my female regions and it looked bad, thats all I'll say. Sorry to gross anyone out. My Dr wasnt in so I saw one of his associates (a woman that I dont like). She brought me into an exam room and looked at my neck. I asked her if she wanted to see the other parts of my body that contained the rash. She said, no thats OK. OK, well, I would feel better if you looked at it, I said. She insisted that she didnt need to see it and that it was a drug rash from the Taxotere. She continued to ask me what I was doing for it and I told her about the benadryl and atarax for the itch and also the creams I had been using on it. I used an antibiotic, hydrocortisone, antifungal cream and powder and not all at the same time. None of them worked too well so then I was just using plain cornstarch to stop the itch and absorb the moisture. I asked her about my throat because I have no voice at the moment and both my kids are being treated for strep throats with antibiotics. Do you think she did a throat culture or blood cultures? NO, and that surprised me because my WBC count was extremely low a few days ago when I came in to have it checked. She looked down my throat and said it looked fine. Funny, when I looked down my throat WITH A FLASHLIGHT SO I COULD SEE, it was RED and had striations typical of a strep infection. So, no culture, no blood tests, no meds, nothing. This was turning into a supreme waste of my time and I was late for my OT appointment! She told me as I was leaving that I might want to see a dermatologist. Maybe my regular oncologist should have mentioned this to me the other day before he said that HE wanted to see me again if it got worse.
I post on a breast cancer board and another woman had the same skin breakout as me with the same chemo drug, Taxotere. She said the Dr had never seen anyone with those type of blisters/rash and that it must be herpes. To make a long story short the woman insisted she never had herpes and they ran a test because the Dr was an asshole and didnt listen to his patient. The tests showed that she was negative for the herpes virus and the Dr was WRONG. I wonder if he apologized to her over that? Most of these Dr's get tunnel vision and only see the part of the picture that they want to see instead of the WHOLE picture.
After that fiasco I went to my OT appointment and had my fluid filled arm wrapped because yet again my compression garment is not in (she said today it would probably be in later in the day WHOOPIE! later in the day when I am HOME where it can do me a whole lot of good)
We left the hospital just in time to make it to the counciling place where we live. I was a bit nervous about this entire thing but knew that it was something we have to do before we rip each others eyes out. The kids had to come with us because school is out and camp hasnt started yet. They were very accomadating to us with having another councilor to watch the kids while we were with the other. I cant say she watched them very well though because they were running up and down the stairs of the old colonial the counciling place is in and they are quite steep. I was silently biting my tongue inside the room as I heard their shennanigans from there. God forbid my kids behave for a moment that I REALLY need them to! The world would stop rotating on its axis. Yup, I have a great sense of humor which gets me through the hard times. I dont know what I would do without it.
The session went well and I cried a lot but that was to be expected. I wonder sometimes if my husband has any emotions because I never see them. Maybe he hides them well but I would like to see him express more of them so I can learn to understand him better.
I was totally drained when we got home and laid down for a little bit. I fell asleep for a few minutes but I needed to sleep hours to make up for the lack of sleep in my life lately. My throat was hurting more and the rash was getting worse with the increasing temperatures. I found some Zovirax cream (anti-viral) and used that on the rash to see if it would help. Heck it couldnt hurt me could it! Might as well give it a shot. I was concerned with the lack of attention the Dr gave my throat and my slight temperature I had. She asked me if I had a fever and I told her that I honestly didnt know and probably wouldnt be able to tell because I am on Oxycontin, oxycodone, Tylenol at times alternated with Motrin. If I had pain or fever from an infection it would be masked by these drugs. All the more reason she should have done a culture.
This evening at 8pm I called my regular internist who was on call to see if he could help me. He didnt call me back until after 10 because the pagers were down at the hospital. I am just glad he returned my call. I told him what happened at my oncologists office today and the rash and my throat and he felt very bad for me. He told me to start taking the Zithromax antibiotic I had in the house tonight and see if that would help to clear up my throat and also maybe help with the rashes which he thinks is a secondary infection. He thinks everything is related in some way to one another. I hope he is right. He also wants me to come down to his office tomorrow so he could get a look at the rash. I am not sure I could get to his office tomorrow because of the heavy, torrential rains we are going to be getting (starting tonight). They are predicting 5 inches of rain this weekend! Thats a lot of rain and flooding on the highways here which wont make it easy for me to get to the Dr's office.
I am so glad that I have such a wonderful Dr who genuinely cares about me as a person and not just as his patient who pays him to take care of me. He would go out of his way to help me or my DH and has many times in the past, not only for me but my parents and grandparents.
On the topic of HAIR~I have notices lots of fuzz and baby hairs all over my head. I am excited over this new discovery but a little disappointed over my eyebrows and eyelashes being totally gone. I just want my hair back so I can use hair products again. I know it sounds funny but I miss the smell of all that stuff
When my hair starts to fill in a little bit more I am going to use the Morocco Method products I bought right before my diagnosis. I read on their message boards that many people who lose their hair and undergo chemo use it with good results growing new, stronger, healthier hair. Plus, I wont have to use a lot like I did when my hair was 31" so thats a positive. The Zen Detox is something that looks spectacular for use after I finish my last round of chemo to make sure its out of my hair follicles and nothing is their to hinder the growth of new baby hairs.
I did get back to sleep for a few hours but then had to get up to be at an OT appointment at 10:30am. I decided to stop at the oncologists office first so he could take a look at the rash on my neck again because it had gotten worse. I also had the rash located around my female regions and it looked bad, thats all I'll say. Sorry to gross anyone out. My Dr wasnt in so I saw one of his associates (a woman that I dont like). She brought me into an exam room and looked at my neck. I asked her if she wanted to see the other parts of my body that contained the rash. She said, no thats OK. OK, well, I would feel better if you looked at it, I said. She insisted that she didnt need to see it and that it was a drug rash from the Taxotere. She continued to ask me what I was doing for it and I told her about the benadryl and atarax for the itch and also the creams I had been using on it. I used an antibiotic, hydrocortisone, antifungal cream and powder and not all at the same time. None of them worked too well so then I was just using plain cornstarch to stop the itch and absorb the moisture. I asked her about my throat because I have no voice at the moment and both my kids are being treated for strep throats with antibiotics. Do you think she did a throat culture or blood cultures? NO, and that surprised me because my WBC count was extremely low a few days ago when I came in to have it checked. She looked down my throat and said it looked fine. Funny, when I looked down my throat WITH A FLASHLIGHT SO I COULD SEE, it was RED and had striations typical of a strep infection. So, no culture, no blood tests, no meds, nothing. This was turning into a supreme waste of my time and I was late for my OT appointment! She told me as I was leaving that I might want to see a dermatologist. Maybe my regular oncologist should have mentioned this to me the other day before he said that HE wanted to see me again if it got worse.
I post on a breast cancer board and another woman had the same skin breakout as me with the same chemo drug, Taxotere. She said the Dr had never seen anyone with those type of blisters/rash and that it must be herpes. To make a long story short the woman insisted she never had herpes and they ran a test because the Dr was an asshole and didnt listen to his patient. The tests showed that she was negative for the herpes virus and the Dr was WRONG. I wonder if he apologized to her over that? Most of these Dr's get tunnel vision and only see the part of the picture that they want to see instead of the WHOLE picture.
After that fiasco I went to my OT appointment and had my fluid filled arm wrapped because yet again my compression garment is not in (she said today it would probably be in later in the day WHOOPIE! later in the day when I am HOME where it can do me a whole lot of good)
We left the hospital just in time to make it to the counciling place where we live. I was a bit nervous about this entire thing but knew that it was something we have to do before we rip each others eyes out. The kids had to come with us because school is out and camp hasnt started yet. They were very accomadating to us with having another councilor to watch the kids while we were with the other. I cant say she watched them very well though because they were running up and down the stairs of the old colonial the counciling place is in and they are quite steep. I was silently biting my tongue inside the room as I heard their shennanigans from there. God forbid my kids behave for a moment that I REALLY need them to! The world would stop rotating on its axis. Yup, I have a great sense of humor which gets me through the hard times. I dont know what I would do without it.
The session went well and I cried a lot but that was to be expected. I wonder sometimes if my husband has any emotions because I never see them. Maybe he hides them well but I would like to see him express more of them so I can learn to understand him better.
I was totally drained when we got home and laid down for a little bit. I fell asleep for a few minutes but I needed to sleep hours to make up for the lack of sleep in my life lately. My throat was hurting more and the rash was getting worse with the increasing temperatures. I found some Zovirax cream (anti-viral) and used that on the rash to see if it would help. Heck it couldnt hurt me could it! Might as well give it a shot. I was concerned with the lack of attention the Dr gave my throat and my slight temperature I had. She asked me if I had a fever and I told her that I honestly didnt know and probably wouldnt be able to tell because I am on Oxycontin, oxycodone, Tylenol at times alternated with Motrin. If I had pain or fever from an infection it would be masked by these drugs. All the more reason she should have done a culture.
This evening at 8pm I called my regular internist who was on call to see if he could help me. He didnt call me back until after 10 because the pagers were down at the hospital. I am just glad he returned my call. I told him what happened at my oncologists office today and the rash and my throat and he felt very bad for me. He told me to start taking the Zithromax antibiotic I had in the house tonight and see if that would help to clear up my throat and also maybe help with the rashes which he thinks is a secondary infection. He thinks everything is related in some way to one another. I hope he is right. He also wants me to come down to his office tomorrow so he could get a look at the rash. I am not sure I could get to his office tomorrow because of the heavy, torrential rains we are going to be getting (starting tonight). They are predicting 5 inches of rain this weekend! Thats a lot of rain and flooding on the highways here which wont make it easy for me to get to the Dr's office.
I am so glad that I have such a wonderful Dr who genuinely cares about me as a person and not just as his patient who pays him to take care of me. He would go out of his way to help me or my DH and has many times in the past, not only for me but my parents and grandparents.
On the topic of HAIR~I have notices lots of fuzz and baby hairs all over my head. I am excited over this new discovery but a little disappointed over my eyebrows and eyelashes being totally gone. I just want my hair back so I can use hair products again. I know it sounds funny but I miss the smell of all that stuff
When my hair starts to fill in a little bit more I am going to use the Morocco Method products I bought right before my diagnosis. I read on their message boards that many people who lose their hair and undergo chemo use it with good results growing new, stronger, healthier hair. Plus, I wont have to use a lot like I did when my hair was 31" so thats a positive. The Zen Detox is something that looks spectacular for use after I finish my last round of chemo to make sure its out of my hair follicles and nothing is their to hinder the growth of new baby hairs.
Sunday, June 18, 2006
Father's Day 2006
My husband had to work a long shift today because it was his weekend to work so my Mom came up to help me out with the kids. My Dad had taken my Grandmother down to the shore for her to spend time with my Great Aunts. They are all in their 80's and get along quite well together especially when they break out the cards to play poker with all the lose change they have in their purses. Its quite fun to watch them get so competative with one another! LOL.
The kids and I decided to be original and make some home made cards for DH and my Dad. They came out adorable and he loved them. My Mom still has to give my Dad his shirt that I bought him for Father's Day but she is going to be here a few days so who knows when she will see him again.
I actually got to use one of DH's fathers day gifts today even before he did. My Mom and Dad bought him a THERMOS Grill to GO and its like a huge George Forman grill with legs but it uses propane to cook. I made Honey Mustard Chicken with veggie kabobs and they came out great too. The problem with me today was that everything annoyed the hell out of me due to the pain I was in and that it was very hot outside which didnt make it any better. I am so tired right now that I cant focus to type the right letters and keep going back to fix it. Maybe I can do this better when I am caught up on my sleep? Sorry for such a short post but I have to get some shut eye if thats possible because sometimes when I am overtired I cant get to sleep and then get up all hours of the night and surf the web or watch TV, my other vice.
The kids and I decided to be original and make some home made cards for DH and my Dad. They came out adorable and he loved them. My Mom still has to give my Dad his shirt that I bought him for Father's Day but she is going to be here a few days so who knows when she will see him again.
I actually got to use one of DH's fathers day gifts today even before he did. My Mom and Dad bought him a THERMOS Grill to GO and its like a huge George Forman grill with legs but it uses propane to cook. I made Honey Mustard Chicken with veggie kabobs and they came out great too. The problem with me today was that everything annoyed the hell out of me due to the pain I was in and that it was very hot outside which didnt make it any better. I am so tired right now that I cant focus to type the right letters and keep going back to fix it. Maybe I can do this better when I am caught up on my sleep? Sorry for such a short post but I have to get some shut eye if thats possible because sometimes when I am overtired I cant get to sleep and then get up all hours of the night and surf the web or watch TV, my other vice.
Friday, June 16, 2006
My 7th Chemotherapy Treatment~June 15, 2006
I had my appointment today with the breast surgeon and we set the date for Aug. 15th for my surgery. I have to also make an appointment with the plastic surgeon and discuss what procedure we are going to choose for the reconstruction. I think I will feel a lot better about everything once I speak to the plastic surgeon. I also had a chance to speak to 2 ladies who had bilateral mastectomies. One was an older woman in her 50's who didnt have recon but uses prosthesis. They look good but they slide alot and I dont think I want to deal with that. You also have to wear different ones when you are swimming in a pool or any water because the others are not supposed to be submerged in water. The other woman is one that works in the Dr's office and she helped me out a lot with questions I had written down. She answered all of them and they look fabulous, like real breasts!
I also had my 7th Chemotherapy Treatment today and my first with TAXOTERE. I had a bad reaction to the TAXOL so the oncologist felt it was necessary to switch and avoid a repeat performance of the last time! I wasn't going to let that happen either. I had a little encounter with a lady sitting in my treatment seat. I went to sit in my seat and she had moved to another one which was in the treatment area when she should have been in the waiting room. People receiving chemo want privacy not some stranger sitting there watching what meds are being given to a patient. Anyway my husband went to sit in my seat that I always sit in and I said jokingly, “get out of my lucky seat! I need to sit there.”
This woman looked at me taking all my stuffed animals out and arrange them on the shelf next to me and gave me the weirdest look. I looked back at her and said that I am a bit superstitious and like things to be exactly the same way each time I get treated. That means I have the same seat and articles that I bring with me each and every time. She made some stupid comments about, “well, if that's what makes you happy.” She said it in a very condescending way though and it annoyed me. Another thing that I though was hilarious was that I overheard her saying that she has lived in the same neighborhood and cannot make any friends. She said, “I don't understand, I am a friendly person how come I cant make friends?” Well lady let me clue you in on that one. Maybe its because you think you are better than everyone else and no one wants friends like that. I was laughing out loud and I really couldn't care if she heard me or not. People like that are just annoying.
Joy was my nurse today and she gave me an IV anti-emetic, Benadryl, Decadron, and the TAXOTERE. I was so nervous, yet again due to the new drug, and was feeling a little weird when it was infused but overall it went well. The good thing is that the TAXOTERE can be infused a little bit quicker than the TAXOL was. I was glad that it was over as quickly as it was. I am feeling a bit run down and tired right now from the treatment. My body is just starting to hurt. Tomorrow I have an OT appointment that I hope I can make. The therapist said if I didn't feel good to give her a call and let her know so we can reschedule. I’ll see how I feel when I wake up in the morning.
I decided to put curlers in my wig tonight to give it a bit of a curl. When I washed it the other day it came out quite straight and I am missing my curls a whole bunch right now! This is the closest I can get to them so I hope they come out OK. I am going to leave them in until the hair is totally dry. I spritzed it with lavender water and aloe vera gel before I rolled each piece of hair.
I ate 1/4 of a Sara Lee pound cake and I want more! Man, do these steroids make you hungry! Its not even a normal hungry its ravenous. My Mom saw how depressed I was the other day that I was upset over the steroid weight gain and she offered to pay for the NutriSystem plan when I am finished with chemo. I am seriously considering it because there are 6 weeks after chemo is over and then I will have my surgery and I think that's a great amount of time to lose some weight, like 15 lbs. Its probably better to go into the surgery healthier and a bit slimmer.
I am hoping that I can keep the pain that comes with the TAXOTERE away with control through the pain meds, Right now my hip joints and knees are starting to hurt. I tool some Tylenol PM so hopefully it will make me sleep too!
I am mentioning in my blog that I am starting to see a nurse practitioner (Kathleen) who is a licensed family psychologist and since I have BC, its a free service. I spoke to her once on the phone about lots of things that are going on and how being sick exaggerates all the minor problems you had before. She agreed and gave me the name of a community services group in my town that sees patients on a sliding scale because those co-pays add up and right now we are short on the cash. My husband and I have our 1st appointment next week and I think its going to help a lot because he is having a difficult time talking to me and we are also fighting way too much. No one said marriage was easy and its even harder when one partner has a diagnosis of cancer. We both love one another and I want to make things right so we have a healthier marriage and that this cancer doesn't destroy that. Kathleen had said that we probably only need a few sessions to talk and learn better communications techniques which all married people should know. I am not embarrassed to say these things because they're are so many women who go through this and have problems with their family and spouse. If this can help one person then I have done my job, whatever that it! LOL
I also had my 7th Chemotherapy Treatment today and my first with TAXOTERE. I had a bad reaction to the TAXOL so the oncologist felt it was necessary to switch and avoid a repeat performance of the last time! I wasn't going to let that happen either. I had a little encounter with a lady sitting in my treatment seat. I went to sit in my seat and she had moved to another one which was in the treatment area when she should have been in the waiting room. People receiving chemo want privacy not some stranger sitting there watching what meds are being given to a patient. Anyway my husband went to sit in my seat that I always sit in and I said jokingly, “get out of my lucky seat! I need to sit there.”
This woman looked at me taking all my stuffed animals out and arrange them on the shelf next to me and gave me the weirdest look. I looked back at her and said that I am a bit superstitious and like things to be exactly the same way each time I get treated. That means I have the same seat and articles that I bring with me each and every time. She made some stupid comments about, “well, if that's what makes you happy.” She said it in a very condescending way though and it annoyed me. Another thing that I though was hilarious was that I overheard her saying that she has lived in the same neighborhood and cannot make any friends. She said, “I don't understand, I am a friendly person how come I cant make friends?” Well lady let me clue you in on that one. Maybe its because you think you are better than everyone else and no one wants friends like that. I was laughing out loud and I really couldn't care if she heard me or not. People like that are just annoying.
Joy was my nurse today and she gave me an IV anti-emetic, Benadryl, Decadron, and the TAXOTERE. I was so nervous, yet again due to the new drug, and was feeling a little weird when it was infused but overall it went well. The good thing is that the TAXOTERE can be infused a little bit quicker than the TAXOL was. I was glad that it was over as quickly as it was. I am feeling a bit run down and tired right now from the treatment. My body is just starting to hurt. Tomorrow I have an OT appointment that I hope I can make. The therapist said if I didn't feel good to give her a call and let her know so we can reschedule. I’ll see how I feel when I wake up in the morning.
I decided to put curlers in my wig tonight to give it a bit of a curl. When I washed it the other day it came out quite straight and I am missing my curls a whole bunch right now! This is the closest I can get to them so I hope they come out OK. I am going to leave them in until the hair is totally dry. I spritzed it with lavender water and aloe vera gel before I rolled each piece of hair.
I ate 1/4 of a Sara Lee pound cake and I want more! Man, do these steroids make you hungry! Its not even a normal hungry its ravenous. My Mom saw how depressed I was the other day that I was upset over the steroid weight gain and she offered to pay for the NutriSystem plan when I am finished with chemo. I am seriously considering it because there are 6 weeks after chemo is over and then I will have my surgery and I think that's a great amount of time to lose some weight, like 15 lbs. Its probably better to go into the surgery healthier and a bit slimmer.
I am hoping that I can keep the pain that comes with the TAXOTERE away with control through the pain meds, Right now my hip joints and knees are starting to hurt. I tool some Tylenol PM so hopefully it will make me sleep too!
I am mentioning in my blog that I am starting to see a nurse practitioner (Kathleen) who is a licensed family psychologist and since I have BC, its a free service. I spoke to her once on the phone about lots of things that are going on and how being sick exaggerates all the minor problems you had before. She agreed and gave me the name of a community services group in my town that sees patients on a sliding scale because those co-pays add up and right now we are short on the cash. My husband and I have our 1st appointment next week and I think its going to help a lot because he is having a difficult time talking to me and we are also fighting way too much. No one said marriage was easy and its even harder when one partner has a diagnosis of cancer. We both love one another and I want to make things right so we have a healthier marriage and that this cancer doesn't destroy that. Kathleen had said that we probably only need a few sessions to talk and learn better communications techniques which all married people should know. I am not embarrassed to say these things because they're are so many women who go through this and have problems with their family and spouse. If this can help one person then I have done my job, whatever that it! LOL
Saturday, June 10, 2006
Look Good, Feel Better
JUNE 8, 2006~I promised to write about the LOOK GOOD FEEL BETTER class that I attended last night so here it is. There were about 12-14 women there and we all had to say a little something about ourselves which was somewhat emotional for me but I got through it. Most of the ladies there were older than me making me the youngest one there. One of the ladies there was actually a patient of my husband's when she was in the hospital a few months ago. When I did my intoduction she was shocked when I mentioned that my husband was an oncology nurse upstairs. I guess it is ironic that he is an oncology nurse and I get cancer. After the intros we started talking about headcoverings and different ways to wear them (which I already am extremely good at I must say) but I paid attention like a good student would. There was a lady there that went over all the different types of wigs out there and how to care for them. I didnt wear my wig last night due to the fact it was raining cats and dogs and I didnt want to damage it because its a human hair wig and getting the lace top wet can cause the hair to loosen up and fall out. Then it was onto the good bag filled with all kinds of cosmetics. There were lipsticks from Origins, Aveda, & Oil Of Olay. Cleansers from Eucerin and toner from AVON with the matching cream, Estee Lauder blush, mascara and liquid shadow, Aveda Blush, Merle Norman eye color, liners and brow pencils, Channel foundation, Clinique sunblock moisturizer and concealer, A big bottle of body cream, q-tips, and a few other things I cant remember. They went step by step on how to apply (which I think I am pretty good at) and the instructor was a Mary Kay rep and I used to do that so I know the whole presentation already. I did learn a few things about what color I am. According to the MK lady I am a "Cool" which means I look good in blues, pinks, etc. I wear lots of pink because its my favorite color. Overall it was a good time had by all and I was so happy to see some ladies 6 months post chemo with their heads covered in thick curly hair. I cant wait for that to be me one day soon.
This morning my skin looked a lot worse so I headed down to the Dr's office so he could take a look at it. When he saw it he knew right away it was a drug reaction rash from the Taxol. I was a little upset because now they might have to change up my chemo and give me Taxotere or Abraxane instead of the Taxol. They are both molecularly different so the chances of a reaction are slim but with me you never know thats why I dont believe Dr's when they give me the statistics on something.
The Dr gave me IV Benadryl and Tagamet which took about an hour. Good thing I wasnt driving because the benadrly made me sleepy. Dr also wrote me a presription for Atarax which is an antihistasmine and in my opinion, better than benadryl for the itch. My hands (now both of them, not just the left, is so swollen that I physically cant make a fist. I have an OT appointment tomorrow with the therapist and hopefully she will have my compression sleeve that I have been waiting weeks to get. In the meantime more swelling is occuring and I dont want it to be irreversible.
When I arrived home I laid down and decided to take a nap before dinner because I didnt sleep well last night due waking up to scratch this damn itch! All of a sudden a horrible vice like gripping pain in my stomach woke me up and I was bolt upright in the bed then doubled over crying thinking I was going to die. Yes, it was that bad. My DH immediately called the Dr and he seems to think the steroids are causing that pain and to stop taking them for 24 hours and then resume. Also he wants me to up my dosage of pain meds but thats not such a bad thing. The bad thing is that for this type of pain nothing is helping me including the pain meds. Of course if it gets worse I have to go to the ER which I am trying to avoid at all cost. I had a bad experience with them properly treating my pain and I had to take my OWN meds that I brought with me! Hopefully the break from the steroid will help out a bit.
JUNE 10, 2006~Yesterday I went to the hospital to have an abdominal x-ray because the pain was unbearable. It was so bad that I couldnt even swallow due to my stomach spasming. The results of the x-ray showed a HUGE "back-up" and the Dr told me to take Magnesium citrate and get it out. The back up in my intestines was causing my whole intestinal tract to spasm and causing the pain. I took the whole bottle of Mag Citrate yesterday and half of another bottle today. I am feeling much better after spending some time in the bathroom. The funny thing is that I was never constipated in any way so how was I to know that I had this problem? The key is to avoid it in the future.
I still have the hives/rash and itch. My hands are swollen from the intense scratching and its driving me insane, even with all the anti-histamines and the steroids. I really hope that the Dr is not going to give me the Taxol again when I have my treatment on June 15th. I dont want to go through this again. There are other alternatives to the Taxol such as Taxotere and Abraxane. It doesnt matter because I will refuse to have the Taxol administered. I will advocate my patient rights if I have to.
This morning my skin looked a lot worse so I headed down to the Dr's office so he could take a look at it. When he saw it he knew right away it was a drug reaction rash from the Taxol. I was a little upset because now they might have to change up my chemo and give me Taxotere or Abraxane instead of the Taxol. They are both molecularly different so the chances of a reaction are slim but with me you never know thats why I dont believe Dr's when they give me the statistics on something.
The Dr gave me IV Benadryl and Tagamet which took about an hour. Good thing I wasnt driving because the benadrly made me sleepy. Dr also wrote me a presription for Atarax which is an antihistasmine and in my opinion, better than benadryl for the itch. My hands (now both of them, not just the left, is so swollen that I physically cant make a fist. I have an OT appointment tomorrow with the therapist and hopefully she will have my compression sleeve that I have been waiting weeks to get. In the meantime more swelling is occuring and I dont want it to be irreversible.
When I arrived home I laid down and decided to take a nap before dinner because I didnt sleep well last night due waking up to scratch this damn itch! All of a sudden a horrible vice like gripping pain in my stomach woke me up and I was bolt upright in the bed then doubled over crying thinking I was going to die. Yes, it was that bad. My DH immediately called the Dr and he seems to think the steroids are causing that pain and to stop taking them for 24 hours and then resume. Also he wants me to up my dosage of pain meds but thats not such a bad thing. The bad thing is that for this type of pain nothing is helping me including the pain meds. Of course if it gets worse I have to go to the ER which I am trying to avoid at all cost. I had a bad experience with them properly treating my pain and I had to take my OWN meds that I brought with me! Hopefully the break from the steroid will help out a bit.
JUNE 10, 2006~Yesterday I went to the hospital to have an abdominal x-ray because the pain was unbearable. It was so bad that I couldnt even swallow due to my stomach spasming. The results of the x-ray showed a HUGE "back-up" and the Dr told me to take Magnesium citrate and get it out. The back up in my intestines was causing my whole intestinal tract to spasm and causing the pain. I took the whole bottle of Mag Citrate yesterday and half of another bottle today. I am feeling much better after spending some time in the bathroom. The funny thing is that I was never constipated in any way so how was I to know that I had this problem? The key is to avoid it in the future.
I still have the hives/rash and itch. My hands are swollen from the intense scratching and its driving me insane, even with all the anti-histamines and the steroids. I really hope that the Dr is not going to give me the Taxol again when I have my treatment on June 15th. I dont want to go through this again. There are other alternatives to the Taxol such as Taxotere and Abraxane. It doesnt matter because I will refuse to have the Taxol administered. I will advocate my patient rights if I have to.
Thursday, June 08, 2006
One Day at a Time
One Day at a Time
One day at a time, with its failures and fears,
With its hurts and mistakes, with its weakness and tears,
With its portion of pain and its burden of care;
One day at a time we must meet and must bear.
One day at a time to be patient and strong,
To be calm under trial and sweet under wrong;
Then its toiling shall pass and its sorrow shall cease;
It shall darken and die, and the night shall bring peace.
One day at a time - but the day is so long,
And the heart is not brave, and the soul is not strong,
O Thou pitiful Christ, be Thou near all the way;
Give courage and patience and strength for the day.
Swift cometh His answer, so clear and so sweet;
"Yea, I will be with thee, thy troubles to meet;
I will not forget thee, nor fail thee, nor grieve;
I will not forsake thee; I never will leave."
Not yesterday's load we are called on to bear,
Nor the morrow's uncertain and shadowy care;
Why should we look forward or back with dismay?
Our needs, as our mercies, are but for the day.
One day at a time, and the day is His day;
He hath numbered its hours, though they haste or delay.
His grace is sufficient; we walk not alone;
As the day, so the strength that He giveth His own.
by Annie Johnson Flint
One day at a time, with its failures and fears,
With its hurts and mistakes, with its weakness and tears,
With its portion of pain and its burden of care;
One day at a time we must meet and must bear.
One day at a time to be patient and strong,
To be calm under trial and sweet under wrong;
Then its toiling shall pass and its sorrow shall cease;
It shall darken and die, and the night shall bring peace.
One day at a time - but the day is so long,
And the heart is not brave, and the soul is not strong,
O Thou pitiful Christ, be Thou near all the way;
Give courage and patience and strength for the day.
Swift cometh His answer, so clear and so sweet;
"Yea, I will be with thee, thy troubles to meet;
I will not forget thee, nor fail thee, nor grieve;
I will not forsake thee; I never will leave."
Not yesterday's load we are called on to bear,
Nor the morrow's uncertain and shadowy care;
Why should we look forward or back with dismay?
Our needs, as our mercies, are but for the day.
One day at a time, and the day is His day;
He hath numbered its hours, though they haste or delay.
His grace is sufficient; we walk not alone;
As the day, so the strength that He giveth His own.
by Annie Johnson Flint
Monday, June 05, 2006
Kyrie Eleison
Mister Mr~Kyrie
Kyrie eleison, kyrie eleison, kyrie
The wind blows hard against this mountain side,
across the sea into my soul
It reaches into where I cannot hide,
setting my feet upon the road
My heart is old, it holds my memories,
my body burns a gemlike flame
Somewhere between the soul and soft machine,
is where I find myself again
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
When I was young I thought of growing old,
of what my life would mean to me
Would I have followed down my chosen road,
or only wished what I could be
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
oh oh oh oh oh oh oh
oh oh oh oh oh oh oh
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
I just heard this song on the radio and it brought back some great memories.
I went to a private, Catholic high school and before I graduated the school gave us the opportunity to go on a retreat. I wanted my best friend to go with me but she said it was too expensive for her ($100-3 days/2 nights with meals included) and she decided not to go. The whole purpose of the retreat was to reflect on yourself and spirituality so I was glad to be alone. Many girls (not my close friends at all) that had their clique of friends didnt get much out of the retreat from what I observed because they were doing drugs and other illegal stuff I didnt want to know about. Talk about being disrespectful. I avoided them the whole time.
The retreat was on a little island off of Long Island, NY and was run by the Cappucin monks who are very liberal compared to the Roman Catholic priests. They are a part of the Catholic Church but you would never have guessed it by the exciting way they approached running the retreat for us. They would have meditation sessions with us and play current popular music at the time (this was the 80's so just imagine). They played U2's STILL HAVENT FOUND WHAT I AM LOOKING FOR and IN THE NAME OF LOVE which are great songs with huge references to Jesus. I was fortunate to have my own room and didnt have to deal with a roomate so that made me even happier and I was able to get a lot out of the retreat and reflect on where I was headed with my life. In the morning they would wake us up with music played over the loudspeakers in every room. One morning they played KYRIE by MISTER MR. It happened to be one of my favorite songs at the time along with all of MISTER MR'S songs. They actually played another song called BROKEN WINGS in the chapel where we attended mass. During confession they played lots of current rock songs that had religious meaning or significance of some kind in their lyrics. The song KYRIE was always my favorite and I would love when they played it. I think that it pertains to my life right now and thats the reason it brought back this specific memory of the retreat.
Basically it means "Lord, have mercy". In church during mass its said as a prayer:
Lord, have mercy
Christ, have mercy
Lord, have mercy.
Its said 3 times for the Trinity which is the Father, Son and Holy Spirit.
Right now it has meaning for me because God is guiding me down a road that I cannot see and through my belief and faith in him I know that everything will be OK and he will protect me.
I certainly needed some type of wake up call like this song being played on the radio today. I have been feeling really crappy the past few days. I have been angry, depressed, easily pissed off and starting fights with my loved ones and other behaviors that arent healthy to be stuck in. I mean its perfectly normal and healthy to have all these emotions because I am only human and I cant be happy and positive all the time. Pain is causing me to act this way, I am totally convinced. I was in so much pain last night that I couldnt get to sleep until after 2:30am. I hate when that happens because I want to sleep now during the day! I've been thinking about the cancer coming back and what would happen if I had a recurrence. My genetic test results will be coming back on the 12th next week and I am not sure how I feel about it. If its positive I am going to have to have more surgery to remove my ovaries and I just dont want any more surgery! I am sick of procedures and surgeries. You would think that I would be a pro at it right now and I guess I am but I think of all the crap that can go wrong. I need to put my faith in God and put it in his hands because no amount of worrying and fretting over it will change anything except make me more anxious and nervous.
Kyrie eleison, kyrie eleison, kyrie
The wind blows hard against this mountain side,
across the sea into my soul
It reaches into where I cannot hide,
setting my feet upon the road
My heart is old, it holds my memories,
my body burns a gemlike flame
Somewhere between the soul and soft machine,
is where I find myself again
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
When I was young I thought of growing old,
of what my life would mean to me
Would I have followed down my chosen road,
or only wished what I could be
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
oh oh oh oh oh oh oh
oh oh oh oh oh oh oh
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
I just heard this song on the radio and it brought back some great memories.
I went to a private, Catholic high school and before I graduated the school gave us the opportunity to go on a retreat. I wanted my best friend to go with me but she said it was too expensive for her ($100-3 days/2 nights with meals included) and she decided not to go. The whole purpose of the retreat was to reflect on yourself and spirituality so I was glad to be alone. Many girls (not my close friends at all) that had their clique of friends didnt get much out of the retreat from what I observed because they were doing drugs and other illegal stuff I didnt want to know about. Talk about being disrespectful. I avoided them the whole time.
The retreat was on a little island off of Long Island, NY and was run by the Cappucin monks who are very liberal compared to the Roman Catholic priests. They are a part of the Catholic Church but you would never have guessed it by the exciting way they approached running the retreat for us. They would have meditation sessions with us and play current popular music at the time (this was the 80's so just imagine). They played U2's STILL HAVENT FOUND WHAT I AM LOOKING FOR and IN THE NAME OF LOVE which are great songs with huge references to Jesus. I was fortunate to have my own room and didnt have to deal with a roomate so that made me even happier and I was able to get a lot out of the retreat and reflect on where I was headed with my life. In the morning they would wake us up with music played over the loudspeakers in every room. One morning they played KYRIE by MISTER MR. It happened to be one of my favorite songs at the time along with all of MISTER MR'S songs. They actually played another song called BROKEN WINGS in the chapel where we attended mass. During confession they played lots of current rock songs that had religious meaning or significance of some kind in their lyrics. The song KYRIE was always my favorite and I would love when they played it. I think that it pertains to my life right now and thats the reason it brought back this specific memory of the retreat.
Basically it means "Lord, have mercy". In church during mass its said as a prayer:
Lord, have mercy
Christ, have mercy
Lord, have mercy.
Its said 3 times for the Trinity which is the Father, Son and Holy Spirit.
Right now it has meaning for me because God is guiding me down a road that I cannot see and through my belief and faith in him I know that everything will be OK and he will protect me.
I certainly needed some type of wake up call like this song being played on the radio today. I have been feeling really crappy the past few days. I have been angry, depressed, easily pissed off and starting fights with my loved ones and other behaviors that arent healthy to be stuck in. I mean its perfectly normal and healthy to have all these emotions because I am only human and I cant be happy and positive all the time. Pain is causing me to act this way, I am totally convinced. I was in so much pain last night that I couldnt get to sleep until after 2:30am. I hate when that happens because I want to sleep now during the day! I've been thinking about the cancer coming back and what would happen if I had a recurrence. My genetic test results will be coming back on the 12th next week and I am not sure how I feel about it. If its positive I am going to have to have more surgery to remove my ovaries and I just dont want any more surgery! I am sick of procedures and surgeries. You would think that I would be a pro at it right now and I guess I am but I think of all the crap that can go wrong. I need to put my faith in God and put it in his hands because no amount of worrying and fretting over it will change anything except make me more anxious and nervous.
Saturday, June 03, 2006
Talk to the (swollen) hand
Its 10:30pm and my arm is more swollen than this afternoon. I decided to let my husband wrap it for a few hours to see if the swelling would come down. Wrapping it from the hand up to the shoulder pushes the excess lymph fluid back into the body so it drains out of the arm and theoretically brings down the swelling. I am going to try and leave it on until midnight or just after. Its too hot to leave it on all night plus it hurts like hell. Thank God my husband put in the air conditioners today!
I just hope it doesnt get more swollen because the pain seems to increase along with the swelling.
I just hope it doesnt get more swollen because the pain seems to increase along with the swelling.
Friday, June 02, 2006
My 6th Chemotherapy Treatment~June 1st, 2006
Yesterday I had my 6th chemotherapy treatment. It was my 2nd Taxol out of 4. That means I am almost done. I had Pat as my nurse and she was so excited that I am almost done. I cant get that excited yet, maybe at my next treatment. When I arrived I did the usual stuff, I went to the lab to have my blood drawn. Results were what they called excellent for someone going through dose dense chemo. My hematocrit or RBC's were actually improved from the last time. They were 32 last time and now they went up 2 pts to 34. I was shocked that they improved and also shocked that my WBC's werent elevated because I woke up with a slight cough. I think the cough was caused by taking too much benadryl the night before. When I took the Tylenol PM I took 2 pills and next time I know to take 1 only. It dried my lungs up too much so I learn from my mistakes.
After my blood results came in they set me up in my usual recliner in the back of the huge waiting room. I was seated next to an elderly lady, probably in her late 70's or early 80's who started a converstation with me while I started to get my pre-meds.
I was getting Decadron, another anti-emetic that I cant remember the name of, benadryl and tagamet, all IV, so I was a bit groggy while having this conversation with my elderly friend, Belle. She asked me what I was being treated for and I told her breast cancer. She asked me lots of questions about how the chemo made me feel and was surprised that she was feeling lots of the same things I was. There were times in our conversation where I can see that she was getting emotional and wanted to cry. I said a few times that its OK to cry and I do it alot. She smiled at me and didnt reply but I can tell she cried in private. I asked her what she was being treated for and she said she had a tumor on her ovary and that they were trying to shrink it but it wasnt shrinking after 6 months of chemo. Wow, I was shocked that she was going through this for 6 months and they were unable to remove it until it shrunk. I felt so bad for her that I wanted to get up and hug her but I was stuck in my recliner. When she was finished with her treatment she came over to me and put her hand on my arm and said, "Good luck to you". I wished her the same and we parted ways. I told her maybe we would run into each other again on a Thursday treatment day. What a sweet lady. Like all the other patients I have met during my treatments, I will never forget her.
My hubby went to get me a hamburger and fries from the hospital cafeteria across the street for my usual lunch during treatment. I couldnt finish it because my stomach felt funny and I didnt want to push it and then throw up. During the Taxol infusion I noticed my skin and nail beds were stark white! It scared the crap out of me when I saw it but my husband said it was common when Taxol is being given. That didnt make me feel any better. I fell asleep the last 60-90 minutes of the treatment and the office at the time was on lunch break so no one was in the waiting room. It was nice and quite and I was able to rest. The nurses and Dr were all whispering as not to wake me up. I thought that was so sweet of them.
On the way home the pain started to kick in. My joints, mostly in my lower body were not happy. Neuropathy was also occuring in my feet and hands. I hate that horrible feeling of numbness because it makes it difficult to walk and do things with your hands. My left arm is also more swollen today and I think that the Taxol in addition to the lymphedema causes that. I skipped my OT session today due to me not being able to get my butt out of bed. I dont have another appointment until next Friday and I hope the swelling doesnt get any worse.
I took a relaxing bath with my dead sea salts, Pink dead sea salts and extra epsom salts with lavender oil that I made myself. It doesnt make the pain go away but it certainly helps to ease the pain. I always feel better, more refreshed after I soak in the tub for awhile.
Its raining again today as it was all last night. I dont mind the rain its just the lightning and thunder that bothers me. I heard that a police officer was hit by lightning in NYC last night and he was in supposedly the safest place you can be in an electric storm, his car. No place is safe in a storm except my basement! You should see me when a storm is coming, I go into total anxiety attack mode and usually have to pop one of my anti-anxiety pills.
On the hair front I am still rubbing Moonchaser's oil into my head twice a day and there are more little hairs here and there. I am gaining more stubble or peach fuzz as I call it, than length, but thats OK because I know its coming, just not as fast as I want it to.
After my blood results came in they set me up in my usual recliner in the back of the huge waiting room. I was seated next to an elderly lady, probably in her late 70's or early 80's who started a converstation with me while I started to get my pre-meds.
I was getting Decadron, another anti-emetic that I cant remember the name of, benadryl and tagamet, all IV, so I was a bit groggy while having this conversation with my elderly friend, Belle. She asked me what I was being treated for and I told her breast cancer. She asked me lots of questions about how the chemo made me feel and was surprised that she was feeling lots of the same things I was. There were times in our conversation where I can see that she was getting emotional and wanted to cry. I said a few times that its OK to cry and I do it alot. She smiled at me and didnt reply but I can tell she cried in private. I asked her what she was being treated for and she said she had a tumor on her ovary and that they were trying to shrink it but it wasnt shrinking after 6 months of chemo. Wow, I was shocked that she was going through this for 6 months and they were unable to remove it until it shrunk. I felt so bad for her that I wanted to get up and hug her but I was stuck in my recliner. When she was finished with her treatment she came over to me and put her hand on my arm and said, "Good luck to you". I wished her the same and we parted ways. I told her maybe we would run into each other again on a Thursday treatment day. What a sweet lady. Like all the other patients I have met during my treatments, I will never forget her.
My hubby went to get me a hamburger and fries from the hospital cafeteria across the street for my usual lunch during treatment. I couldnt finish it because my stomach felt funny and I didnt want to push it and then throw up. During the Taxol infusion I noticed my skin and nail beds were stark white! It scared the crap out of me when I saw it but my husband said it was common when Taxol is being given. That didnt make me feel any better. I fell asleep the last 60-90 minutes of the treatment and the office at the time was on lunch break so no one was in the waiting room. It was nice and quite and I was able to rest. The nurses and Dr were all whispering as not to wake me up. I thought that was so sweet of them.
On the way home the pain started to kick in. My joints, mostly in my lower body were not happy. Neuropathy was also occuring in my feet and hands. I hate that horrible feeling of numbness because it makes it difficult to walk and do things with your hands. My left arm is also more swollen today and I think that the Taxol in addition to the lymphedema causes that. I skipped my OT session today due to me not being able to get my butt out of bed. I dont have another appointment until next Friday and I hope the swelling doesnt get any worse.
I took a relaxing bath with my dead sea salts, Pink dead sea salts and extra epsom salts with lavender oil that I made myself. It doesnt make the pain go away but it certainly helps to ease the pain. I always feel better, more refreshed after I soak in the tub for awhile.
Its raining again today as it was all last night. I dont mind the rain its just the lightning and thunder that bothers me. I heard that a police officer was hit by lightning in NYC last night and he was in supposedly the safest place you can be in an electric storm, his car. No place is safe in a storm except my basement! You should see me when a storm is coming, I go into total anxiety attack mode and usually have to pop one of my anti-anxiety pills.
On the hair front I am still rubbing Moonchaser's oil into my head twice a day and there are more little hairs here and there. I am gaining more stubble or peach fuzz as I call it, than length, but thats OK because I know its coming, just not as fast as I want it to.
Wednesday, May 31, 2006
Updates and stuff
I woke up this morning naseaus and dry heaving. I hadnt felt this way since the last chemo drug I was on many weeks ago. I took some Zofran and prayed that it would subside. My stomach started to hurt like hell right afterwards. It was a crazy morning in the bathroom, lets just put it that way. In between the bathroom visits I still was able to get the kids dressed and ready for school while my Mom gave them breakfast.
I had an Occupational Therapy appointment at the hospital today. It went well but my arm seems to have become more swollen over the past few days. I think it might have something to do with the heat and humidity we have been experiencing. The therapist said that I shouldnt wear my wedding band because its cutting off lymph flow back into my arm. I had to use soapy water to get this baby off my finger. When I was pregnant my husband had to purchase another wedding band for me because my original one didnt fit so thats what I am wearing now. I feel funny not wearing anything at all on my ring finger, like I am naked in a way.
After my appointment was over I had lunch with my husband. He was working today and his unit is on the same floor as my therapy. It was nice that the kitchen made us some turkey clubs with black bean soup and chocolate cake. My nausea improved and I was able to eat most of it.
On the way home I stopped at CVS to get some Tylenol PM. I have been taking Extra Strength Tylenol at bedtime with 25 mgs of Benadryl for pain and sleeplessness. Its been working really well for me and it helps with my allergies so I thought why not just take them both together? I think it will be easier than taking the 2 different drugs. I bought the generic CVS brand to save a few bucks.
Tomorrow I have my 6th chemo treatment, which is my 2nd out of 4 Taxol treatments. After tomorrow I will be 50% done with the Taxol and have only 2 more treatments to go and then I am officially done with chemo! I cant wait.
I have an appointment in a few weeks with the breast surgeon to discuss the bilateral mastectomy and also get some referrals for plastic surgeons. The wheels are turning and I am both anxious, nervous and a tiny bit excited over the whole thing coming to fruition. Hopefully I can update my journal tomorrow after my treatment if I am awake that is. This time I am going to try and sleep through my treatment (if thats even possible )
I had an Occupational Therapy appointment at the hospital today. It went well but my arm seems to have become more swollen over the past few days. I think it might have something to do with the heat and humidity we have been experiencing. The therapist said that I shouldnt wear my wedding band because its cutting off lymph flow back into my arm. I had to use soapy water to get this baby off my finger. When I was pregnant my husband had to purchase another wedding band for me because my original one didnt fit so thats what I am wearing now. I feel funny not wearing anything at all on my ring finger, like I am naked in a way.
After my appointment was over I had lunch with my husband. He was working today and his unit is on the same floor as my therapy. It was nice that the kitchen made us some turkey clubs with black bean soup and chocolate cake. My nausea improved and I was able to eat most of it.
On the way home I stopped at CVS to get some Tylenol PM. I have been taking Extra Strength Tylenol at bedtime with 25 mgs of Benadryl for pain and sleeplessness. Its been working really well for me and it helps with my allergies so I thought why not just take them both together? I think it will be easier than taking the 2 different drugs. I bought the generic CVS brand to save a few bucks.
Tomorrow I have my 6th chemo treatment, which is my 2nd out of 4 Taxol treatments. After tomorrow I will be 50% done with the Taxol and have only 2 more treatments to go and then I am officially done with chemo! I cant wait.
I have an appointment in a few weeks with the breast surgeon to discuss the bilateral mastectomy and also get some referrals for plastic surgeons. The wheels are turning and I am both anxious, nervous and a tiny bit excited over the whole thing coming to fruition. Hopefully I can update my journal tomorrow after my treatment if I am awake that is. This time I am going to try and sleep through my treatment (if thats even possible )
Wednesday, May 24, 2006
Arm Improvement!
I had my OT appointment today and it wasnt as bad as I thought it was going to be. My OT took a look at the lump in my arm and knew immediately what it was. Where the heck was she when I was in the ER the other night?? I could have used someone who knew what the helll they were talking about. She examined my arm and said the lump was the broken "cord" or scar tissue that was forming the tight rubber band like cords preventing me from moving my arm. She made me move my arm in positions that I was unable to move during previous therapy sessions. I am so happy right now that I am making some progress with this arm!
After she did manual drainage (lymphatic drainage) which involves lots of massage of the arm, chest and back to get the extra fluid that has accumulated in the arm, out of the arm and into the lymph system. She them wrapped it to push the fluid out of the arm. She hasnt received my custom compression sleeve yet so I have to have it wrapped. I am supposed to leave it on until tomorrow morning but its annoying the heck out of me because its hot and a bit cumbersome. I can move it but not as much as I would like. I am going to try and leave it on as long as I can. I have another appointment on Friday with her. She also told me that the cord that broke is hung up with the other scar tissue but with all the therapy it will break up and readsorb into the body. More good news!
After she did manual drainage (lymphatic drainage) which involves lots of massage of the arm, chest and back to get the extra fluid that has accumulated in the arm, out of the arm and into the lymph system. She them wrapped it to push the fluid out of the arm. She hasnt received my custom compression sleeve yet so I have to have it wrapped. I am supposed to leave it on until tomorrow morning but its annoying the heck out of me because its hot and a bit cumbersome. I can move it but not as much as I would like. I am going to try and leave it on as long as I can. I have another appointment on Friday with her. She also told me that the cord that broke is hung up with the other scar tissue but with all the therapy it will break up and readsorb into the body. More good news!
Sunday, May 21, 2006
Another Emergency Room Visit~May 20, 2006
Last night while I was getting undressed to take my bath, I noticed a huge lump on my left arm right above the bend in the elbow crease. This is the same arm that is being treated for lymphedema and cording by my Occupational Therapist. At first I was unsure as to what it could be and then a horrible thought crossed my mind. What if it was a clot? I immediatly called the DR and she told me to go to the ER and get an ultrasound so they could rule out a clot. I was so scared at this point that I was in tears and I think my kids were getting a little scared also. I didnt want to do that to them so I tried my best to calm myself and them down. My daughter was the one telling me that everything would be OK.
When I got to the hospital I was seen immediately by a Physician Assistant who knew nothing about pain control because she thought that 1 Percocet was going to help me. No, I dont think so deary especially when I take Oxycontin 2x a day in addition to oxycodone for breakthrough pain. Yup, 1 Percocet would be enough for my pinky finger pain. If she read my chart she would have known what meds I was taking to begin with. They called in an ultrasound tech to do my test and it happened to be one that my husband is pretty friendly with so he was telling me what he was seeing as he was doing it. He did the entire left arm and all the vessels including my carotid artery. All of them looked well according to him. I felt better after getting the results after the report was out and officially in my chart. So they ruled out a blood clot and I was extremely happy about that but still they didnt give me an answer as to what this lump is. My husband and I have our own theory of what it is. We both think its the lymphedema and fluid pooling in certain areas of my arm which is very common. It also could be that the cording the OT has been working on breaking has actually broken and thats what the lump is. The tissue and fluid there has to be readsorbed into my body and the only way to do that is to wear my compression stocking on my arm, which I am still waiting for, and to go to OT and have the therapist 'decongest' the arm and re route the fliud out of my arm. Sounds complicated but I dont think it is, just a pain in the a** or I should say arm
All I can say is thank God for pain medicine otherwise I could not be able to do anything.
On another note my friend called me yesterday afternoon (finally!) and we talked a bit. I feel better and less angry about the whole situation.
This Taxol is really causing my whole body to hurt especially my joints in my legs, hip and back. I know I mentioned it before but I thought it was going to go away and it hasnt as of yet. I am 3 days post treatment and I am hoping that it starts to feel better soon. I want a few pain free days between treatments, or almost pain free.
On the subject of hair~I have noticed that there are a few new hairs on my head that were not there last week. I am not sure if that means my hair is starting to grow back or what. I am going to continue with Moonchaser's SS Hair Oil at night and keep an eye on it.
When I got to the hospital I was seen immediately by a Physician Assistant who knew nothing about pain control because she thought that 1 Percocet was going to help me. No, I dont think so deary especially when I take Oxycontin 2x a day in addition to oxycodone for breakthrough pain. Yup, 1 Percocet would be enough for my pinky finger pain. If she read my chart she would have known what meds I was taking to begin with. They called in an ultrasound tech to do my test and it happened to be one that my husband is pretty friendly with so he was telling me what he was seeing as he was doing it. He did the entire left arm and all the vessels including my carotid artery. All of them looked well according to him. I felt better after getting the results after the report was out and officially in my chart. So they ruled out a blood clot and I was extremely happy about that but still they didnt give me an answer as to what this lump is. My husband and I have our own theory of what it is. We both think its the lymphedema and fluid pooling in certain areas of my arm which is very common. It also could be that the cording the OT has been working on breaking has actually broken and thats what the lump is. The tissue and fluid there has to be readsorbed into my body and the only way to do that is to wear my compression stocking on my arm, which I am still waiting for, and to go to OT and have the therapist 'decongest' the arm and re route the fliud out of my arm. Sounds complicated but I dont think it is, just a pain in the a** or I should say arm
All I can say is thank God for pain medicine otherwise I could not be able to do anything.
On another note my friend called me yesterday afternoon (finally!) and we talked a bit. I feel better and less angry about the whole situation.
This Taxol is really causing my whole body to hurt especially my joints in my legs, hip and back. I know I mentioned it before but I thought it was going to go away and it hasnt as of yet. I am 3 days post treatment and I am hoping that it starts to feel better soon. I want a few pain free days between treatments, or almost pain free.
On the subject of hair~I have noticed that there are a few new hairs on my head that were not there last week. I am not sure if that means my hair is starting to grow back or what. I am going to continue with Moonchaser's SS Hair Oil at night and keep an eye on it.
Friday, May 19, 2006
My 5th Chemotherapy Treatment~May 18, 2006
I was so nervous about yesterdays chemo treatment that I couldnt stop shaking the entire way there. My husband reassured me that I had already been through much worse before with the Adriamycin/Cytoxan combo and if I could get through that I could get through anything. I knew that he was right but its the fear of the unknown more than anything else that gets to you. I brought with me my arsenal of good luck stuffed animals and several prayer books, rosary, and other things that make the trip with me every time I get chemo. I dont necessarily think that I am superstitious but I just think that every little bit helps. I say if it makes you feel better than do it.
When we got there the 1st thing I had to do was have my blood drawn to make sure all was well with it so I could get my treatment. My Hematocrit dropped from 34 to 32 but its still in the acceptable range according to the DR. He said that I am young and I dont need any Procrit or Nupogen as of yet. I think that they are going to wait until my level hits around 28 or so to give me anything to bring it up. So I am a little anemic and I need to eat foods like meats and green leafy veggies to help.
When it was time for my treatment I sat in my usual treatment chair on the other side of the waiting room (there are huge jungle plants and a folding screen to block the area so its private), set up my animals and books on the table along with my drinks and various snacks. As you can see I always come prepared! One of my favorite nurses in the office, Joy, was doing my treatment with me today and she was extremly comforting to me when I started to cry out of nervousness and other things. She told me what she was going to do and that everything was going to be OK. I also let it spill out that I was upset over my friend and some family members not calling and such. I told her the story. She told me that it happens a lot to cancer patients and he hears it from the patients who she treats. Its not right but it happens and she cant explain it. The DR, who is such a wonderful guy, walked by while I was crying and also stopped to comfort me. He kinda heard what we were talking about and basically told me the same thing. He also said that right now I have to worry about ME and not silly friends who probably arent my friends to begin with if they act that way. I know that he's right but it still hurts. Joy told me that I could write a letter to her even if I dont decide to send it at least I get my feelings out. I decided to do that while she was starting my IV with the meds. Since I was so nervous she didnt give me a blow by blow description of what was in the IV and good thing because I think it would have been worse if I knew. I realized while I was writing that I felt a bit woozy and disconnected from my body. I grabbed Joy as she was walking by and told her that I thought something was wrong. She replied with, "Its the IV Benadryl you're getting". OK, that explains it! I asked her for some pillows and a blanket so I could close my eyes and maybe fall asleep. By this time my husband had returned with an awesome hamburger, fries and chocolate cake that he had made at the hospital across the street. It was awesome!
After I finished eating I didnt even realize that the TAXOL had been infusing for 20 minutes! I asked Joy when she was going to start it and she said that it had been running for the past 20 minutes and that everything was going great. She said that if I was going to have a reaction I would have had it already. Sounds like good news to me. I decided to complete the letter to my friend at that time. Another great nurse, Mary, walked by and asked what novel I was writing! I quickly told her the story of my friend (very quick) and she said that was a great idea. An older man who was at the desk came over to me and said, "I am sorry I couldnt help hearing what you were taling about and I would like to give you this (he handed me $10) to give to your Mom's cancer run AND your friend is not being a good friend to you". At first I couldnt believe it and then I said thank you. What a nice thing to do. Things like that reaffirm my belief that most people are good.
Last night I made the donation to my Mom's site along with my own personal donation in my other name, The Pink Panther. My Mom has been calling me that lately and I think its cute. She is now officially at $7,000!!! and she has 5 more months to go.
I fell asleep the last 45 minutes of the treatment and then it was all done. It took about 4.5 hours for the entire process which really went by quickly. I couldnt wait to get home and get into bed, I was so tired from the benadryl. When I got home I crawled into bed and slept for 3 hours. When I woke up I had a small piece of pizza that DH made the kids. Later on I had some ice cream because the Decadron was doing a number on my stomach and it does help. I was so tired that after watching a little TV, I fell asleep with my nightstand light on and TV left on. When I woke at 4 am the cat was begging me to feed him. My older cat was asleep on my bed and just wanted to sleep, what a good, mellow cat he is!I fed him and got back in bed.
Yes, I slept until 9am when the phone rang and it was Joy, the nurse, wanting to know how I was feeling. I told her I was tired and all my joints hurt especially my knees, ankles, hips, shoulders and back. She said that was normal and thats what the TAXOL does. So I am taking my pain meds and they help a lot. Thats all I can do.
Overall, the TAXOL was much better than the AC, no doubt! My body is hurting but I can deal with it. I guess I am used to pain. At least I'm not vomiting!
When we got there the 1st thing I had to do was have my blood drawn to make sure all was well with it so I could get my treatment. My Hematocrit dropped from 34 to 32 but its still in the acceptable range according to the DR. He said that I am young and I dont need any Procrit or Nupogen as of yet. I think that they are going to wait until my level hits around 28 or so to give me anything to bring it up. So I am a little anemic and I need to eat foods like meats and green leafy veggies to help.
When it was time for my treatment I sat in my usual treatment chair on the other side of the waiting room (there are huge jungle plants and a folding screen to block the area so its private), set up my animals and books on the table along with my drinks and various snacks. As you can see I always come prepared! One of my favorite nurses in the office, Joy, was doing my treatment with me today and she was extremly comforting to me when I started to cry out of nervousness and other things. She told me what she was going to do and that everything was going to be OK. I also let it spill out that I was upset over my friend and some family members not calling and such. I told her the story. She told me that it happens a lot to cancer patients and he hears it from the patients who she treats. Its not right but it happens and she cant explain it. The DR, who is such a wonderful guy, walked by while I was crying and also stopped to comfort me. He kinda heard what we were talking about and basically told me the same thing. He also said that right now I have to worry about ME and not silly friends who probably arent my friends to begin with if they act that way. I know that he's right but it still hurts. Joy told me that I could write a letter to her even if I dont decide to send it at least I get my feelings out. I decided to do that while she was starting my IV with the meds. Since I was so nervous she didnt give me a blow by blow description of what was in the IV and good thing because I think it would have been worse if I knew. I realized while I was writing that I felt a bit woozy and disconnected from my body. I grabbed Joy as she was walking by and told her that I thought something was wrong. She replied with, "Its the IV Benadryl you're getting". OK, that explains it! I asked her for some pillows and a blanket so I could close my eyes and maybe fall asleep. By this time my husband had returned with an awesome hamburger, fries and chocolate cake that he had made at the hospital across the street. It was awesome!
After I finished eating I didnt even realize that the TAXOL had been infusing for 20 minutes! I asked Joy when she was going to start it and she said that it had been running for the past 20 minutes and that everything was going great. She said that if I was going to have a reaction I would have had it already. Sounds like good news to me. I decided to complete the letter to my friend at that time. Another great nurse, Mary, walked by and asked what novel I was writing! I quickly told her the story of my friend (very quick) and she said that was a great idea. An older man who was at the desk came over to me and said, "I am sorry I couldnt help hearing what you were taling about and I would like to give you this (he handed me $10) to give to your Mom's cancer run AND your friend is not being a good friend to you". At first I couldnt believe it and then I said thank you. What a nice thing to do. Things like that reaffirm my belief that most people are good.
Last night I made the donation to my Mom's site along with my own personal donation in my other name, The Pink Panther. My Mom has been calling me that lately and I think its cute. She is now officially at $7,000!!! and she has 5 more months to go.
I fell asleep the last 45 minutes of the treatment and then it was all done. It took about 4.5 hours for the entire process which really went by quickly. I couldnt wait to get home and get into bed, I was so tired from the benadryl. When I got home I crawled into bed and slept for 3 hours. When I woke up I had a small piece of pizza that DH made the kids. Later on I had some ice cream because the Decadron was doing a number on my stomach and it does help. I was so tired that after watching a little TV, I fell asleep with my nightstand light on and TV left on. When I woke at 4 am the cat was begging me to feed him. My older cat was asleep on my bed and just wanted to sleep, what a good, mellow cat he is!I fed him and got back in bed.
Yes, I slept until 9am when the phone rang and it was Joy, the nurse, wanting to know how I was feeling. I told her I was tired and all my joints hurt especially my knees, ankles, hips, shoulders and back. She said that was normal and thats what the TAXOL does. So I am taking my pain meds and they help a lot. Thats all I can do.
Overall, the TAXOL was much better than the AC, no doubt! My body is hurting but I can deal with it. I guess I am used to pain. At least I'm not vomiting!
Tuesday, May 16, 2006
Occupational Therapy
I had my second occupational therapy appointment today at the hospital. It was painful but at least I know its for the greater good and I will be able to move my arm normally within 2 months or so. Heather (my OT) took measurements of my arm and ordered my compression stocking which will be ready later this week and will aid in the manual lymphatic drainage of my arm. It will also bring down the swelling that has developed in my arm (lymphedema). I am so happy that its going to go away and I wont have this horrendous pain when I move my arm in a certain way. I need to be able to do normal activities of daily living, like lift my kids and reach up to get something out of the cupboard. Right now I cant because my arm just wont go that high or in that direction. Overall, these 2 OT appointments have encouraged me a great deal and my arm already feels slightly different (in a better way) and its only going to get better.
My next chemotherapy treatment will be on Thursday this week and I am very nervous about it. It will be my 1st Taxol treatment and I have to be at the Dr's office early because it takes 4-5 hours to infuse all the drugs they have to give with the Taxol. I better bring something to read or do while I am there. That's where SuDoku puzzles come in handy!
My next chemotherapy treatment will be on Thursday this week and I am very nervous about it. It will be my 1st Taxol treatment and I have to be at the Dr's office early because it takes 4-5 hours to infuse all the drugs they have to give with the Taxol. I better bring something to read or do while I am there. That's where SuDoku puzzles come in handy!
Tuesday, May 09, 2006
Lymphedema
The Dr who specializes in physical medicine and dealing with lymphedema called me back today. She said that I would need PT for the arm. After surgery scar tissue forms where the lymph nodes are removed. A channel is formed and good tissue and scar tissue combine and it causes a back up of fluids to collect in the arm. The fluid in the arm is painful but so is the "cording" that forms with the scar tissue. It makes it impossible to use the arm in the normal ways it was used before the surgery. The cord needs to be stretched and broken in a sense so the arm can be used properly. If nothing is done to reverse this, cellulitis can form in the arm and infection can develop. If this happens it will put off my chemo treatments and I would need IV antibiotics. Ugh! Something else that I have to worry about, its crazy! Its very frustrating that I cant do normal things with my damn arm! I didnt realize how painful it would be either. I am very happy that someone can help with this problem though. My 1st appointment is on Friday with the Occupational Therapist.
On a more private note, the Dr told me that chemo would put me into state of temporary menapause. My last period was March 17th and I wasnt expecting it anytime soon because I was getting intense hot flashes. Today I started to bleed a little bit and called the office to make sure everything was supposed to be happening that way. The nurse said that they can never say never and to keep an eye to make sure the bleeding doesnt get too intense and cause other problems. So I am not even sure its a real period but if it is I am quite happy about it because I am too young to be in menapause.
I had my 2nd geneticist appointment yesterday. When you 1st go in to the geneticist they tell you that your chances of having the gene (BrCa1 or BrCa2) is 10%. After all the info is gathered about your family history they give you a new percentage. The chances that I have the gene for BC jumped from 10% to 60-80%.
On a more private note, the Dr told me that chemo would put me into state of temporary menapause. My last period was March 17th and I wasnt expecting it anytime soon because I was getting intense hot flashes. Today I started to bleed a little bit and called the office to make sure everything was supposed to be happening that way. The nurse said that they can never say never and to keep an eye to make sure the bleeding doesnt get too intense and cause other problems. So I am not even sure its a real period but if it is I am quite happy about it because I am too young to be in menapause.
I had my 2nd geneticist appointment yesterday. When you 1st go in to the geneticist they tell you that your chances of having the gene (BrCa1 or BrCa2) is 10%. After all the info is gathered about your family history they give you a new percentage. The chances that I have the gene for BC jumped from 10% to 60-80%.
Saturday, May 06, 2006
My 4th Chemotherapy Treatment~May 4th, 2006
This last treatment was one hell of a whopper! I can compare it to the 1st treatment I had thats how aweful it was. I stayed in my pajamas all day yesterday and couldnt move from my bed. Everthing in my body hurts and the Decadron is causing horrendous stomach pain. I found out that with the next treatment (Taxol) I have to take a huge dose of Decadron the night before the treatment and then the day of the treatment and then they give me another dose IV right before the treatment. Thats a lot of Decadron! I hope it doesnt cause the same amount of stomach pain that I am getting now. The only good thing about this is that the closer I am getting to the end of it all and then no more chemo!! Then I have to concentrate on my surgery and reconstruction but I cant even think about that right now. One day at a time is my motto and thats how I get by.
A few of the nurses at the Dr's office said that they have seen many people have their hair start to grow back on the Taxol but I am not holding my breath. I have also heard women say that they did not have their hair grow back until after the Taxol was finished.
I spoke to the oncologist about the swelling in my left arm (lymphedema) and he wants me to see a Dr who is a specialist in Breast cancer and women suffering from lymphedema. I have to call and make an appointment with her. So far the swelling hasnt gotten any worse but it hasnt improved either.
Today my husband took my daughter to a birthday party and my Mom is here waching my son so I am able to rest in my bed. I was actually able to eat something last night for dinner and had some lunch today. I think the steroid makes you have an appetite of sorts when its not causing stomach pain that is. Its so funny because the only thing that settled my stomach the other day was a Drakes Devil Dog after I took the Decadron! I think thats hysterical. I have to ask my hubby to pick up some more of those high fattening snacks. Maybe thats why it helps, because it has a higher fat content that coats the stomach? Who knows, maybe thats why I am addicted to ice-cream lately.
I am trying my best not to order any Bare Escentuals from QVC today and its very hard! They have lots of very pretty colors and I am soooo tempted!
I am wearing my Queen Esther head scarf with all the pretty beading and adornments today and my son said to me, "I like that scarf Mommy" as clear as day. It was so cute I almost cried.
A few of the nurses at the Dr's office said that they have seen many people have their hair start to grow back on the Taxol but I am not holding my breath. I have also heard women say that they did not have their hair grow back until after the Taxol was finished.
I spoke to the oncologist about the swelling in my left arm (lymphedema) and he wants me to see a Dr who is a specialist in Breast cancer and women suffering from lymphedema. I have to call and make an appointment with her. So far the swelling hasnt gotten any worse but it hasnt improved either.
Today my husband took my daughter to a birthday party and my Mom is here waching my son so I am able to rest in my bed. I was actually able to eat something last night for dinner and had some lunch today. I think the steroid makes you have an appetite of sorts when its not causing stomach pain that is. Its so funny because the only thing that settled my stomach the other day was a Drakes Devil Dog after I took the Decadron! I think thats hysterical. I have to ask my hubby to pick up some more of those high fattening snacks. Maybe thats why it helps, because it has a higher fat content that coats the stomach? Who knows, maybe thats why I am addicted to ice-cream lately.
I am trying my best not to order any Bare Escentuals from QVC today and its very hard! They have lots of very pretty colors and I am soooo tempted!
I am wearing my Queen Esther head scarf with all the pretty beading and adornments today and my son said to me, "I like that scarf Mommy" as clear as day. It was so cute I almost cried.
Monday, May 01, 2006
Dinner Date
My husband and I went out to eat Saturday night to celebrate my birthday which was Apr. 22nd. We went to our favorite Japanese Steakhouse that does hibatchi. We didnt sit at the hibatchi tables but decided to sit at a regular table because it was so crowded. They gave us the crappiest table that was in a very bad spot where people who passed by kept bumping my husband. Even though the table was in a bad spot we had a great meal. I was just happy to be out and eating in a restaurant! I caught a few people looking at me funny probably trying to figure out if I was wearing a wig or not. Maybe they were just trying to figure out how I got my hair so perfect! It amazes me how some people are so rude. I would never think about starring at someone who I thought was wearing a wig. I WOULD think that maybe this person is undergoing chemo or maybe has a very good reason that they are wearing a wig at such a young age. Since my diagnosis with BC I have encountered such wonderful people who are kind and compassionate but I have also encountered some very ignorant, stupid people and it drives me nuts.
My 4th treatment, and last AC treatment will be on Thursday May 4th. I am happy that the AC will be done and I am at the half way point with my chemo but a bit anxious about starting the 4 rounds of Taxol.
My 4th treatment, and last AC treatment will be on Thursday May 4th. I am happy that the AC will be done and I am at the half way point with my chemo but a bit anxious about starting the 4 rounds of Taxol.
Tuesday, April 25, 2006
My 35th Birthday~April 22, 2006
I almost forgot to write about my birthday on Saturday! I turned 35 on April 22, 2006 at 1:47pm. I still feel the same as I did before Saturday. Before I was diagnosed with cancer I thought it was a big deal to turn 35 this year and I actually thought I was getting old. When you get a cancer diagnosis at 34 you no longer feel old. You realize how young you really are and how much more time you should be on this earth. I have a long way to go and I have lots to do. I might not know exactly what I have to do but I know whatever I need to do, its definitely not done yet. God has plans for me and I plan on fulfilling them, whatever he wants me to do.
We had some chocolate cake that my husband bought on the way home from work on Saturday. My kids had to blow out the candles 3 times, they were too cute. I was happy that I was able to enjoy a piece of cake without throwing it up or feeling nauseaus. There will be lots more birthdays for me to celebrate and lots of chocolate cake to eat. I am sure of it.
We had some chocolate cake that my husband bought on the way home from work on Saturday. My kids had to blow out the candles 3 times, they were too cute. I was happy that I was able to enjoy a piece of cake without throwing it up or feeling nauseaus. There will be lots more birthdays for me to celebrate and lots of chocolate cake to eat. I am sure of it.
First Geneticist Appointment
I had my 1st appointment with the geneticist yesterday and I still have a headache from all the questions they asked! Its an entire history of your families illnesses and what they died of and all the details you cant imagine. Good thing my Mom wrote a bunch of stuff down for me to bring with me but even that was confusing. They tell you that 10% of all cancer diagnoses are due to genetics. When you look at it on a pie chart it doesnt look so bad but I am always in the small percentage of people that have problems. I had problems that only 1% of women get when they are pregnant so I hate percentages or hearing about them. There are 2 more appointments to go and they take blood during the 2nd appointment and then discuss your results at the last one. I am more worried about my children carrying the gene than me.
Since the last treatment I havent felt well at all. I havent vomited but the nausea and headaches are driving me mad. The anti-nausea medicine tends to cause the headaches so its a viscious cycle. The meds that you have to take for the week after a treatment cause all kinds of side effects but I guess feeling the way I do with the meds is better than feeling sick without them.
On another note my son is not liking my bald head. He keeps telling me to "buy more hair". He just doesnt like my bald head and to tell you the truth, neither do I. My daughter thinks its a riot when I take off my scarf or wig to reveal my "Telly Savalas" head. I am glad that she can laugh about it and not get upset. I am slowly losing my eyebrows and soon they'll be gone. I also have some false eyelashes waiting in the wings for when I lose my eyelashes.
My Mom is continuing to raise money for the AVON WALK that she is doing in October. Her initial goal was $1800 and then she raised it to $2400. Now, to date, she has raised over $5000 and wants to go over $8000. I give her lots of credit because I dont know if I could raise that much money. She couldnt do it without the generousity and kindness of all the people that have given to her already. I thank them from the bottom of my heart.
Since the last treatment I havent felt well at all. I havent vomited but the nausea and headaches are driving me mad. The anti-nausea medicine tends to cause the headaches so its a viscious cycle. The meds that you have to take for the week after a treatment cause all kinds of side effects but I guess feeling the way I do with the meds is better than feeling sick without them.
On another note my son is not liking my bald head. He keeps telling me to "buy more hair". He just doesnt like my bald head and to tell you the truth, neither do I. My daughter thinks its a riot when I take off my scarf or wig to reveal my "Telly Savalas" head. I am glad that she can laugh about it and not get upset. I am slowly losing my eyebrows and soon they'll be gone. I also have some false eyelashes waiting in the wings for when I lose my eyelashes.
My Mom is continuing to raise money for the AVON WALK that she is doing in October. Her initial goal was $1800 and then she raised it to $2400. Now, to date, she has raised over $5000 and wants to go over $8000. I give her lots of credit because I dont know if I could raise that much money. She couldnt do it without the generousity and kindness of all the people that have given to her already. I thank them from the bottom of my heart.
Friday, April 21, 2006
My 3rd Chemotherapy Treatment~4/20/06
This third treatment was not as bad as the 1st but worse than the second. I feel extremely nauseaus but am dealing with is as each hour goes by. Hopefully it will subside after a few days. Tomorrow is my 35th birthday and I am hoping that I can have a peice of cake. I'll force myself to eat the cake if I have to damn it!
I had some issues getting home right after my treatment yesterday and I think that the delay in doing so is part of the reason I feel like crap. We got hung up because not only did the insurance company give me a problem with getting the Neulasta the pharmacy gave me a hard time also. Granted we had to go to another pharmacy than we usually go to but they didnt try to go out of their way to help me and I was so distraught over the fact that I needed this shot within a certain time frame that I started to cry right in the pharmacy. All I kept thinking of is those stupid commercials that show how much this particular pharmacy goes out of their way to help people. What a load of sh*t that it. CVS sucks and I have had so many bad experiences with them that I can freely say it without feeling badly about it. I felt so sick that I didnt care who was there and who saw the lady with the scarf on her head crying. Maybe that will make them realize that there are a**holes in charge of deciding what meds we can get and cant get. It makes me so angry. DH had to go all the way down to the Dr's office to pick up a dose so he could administer it by lunchtime when it was due. Damn insurance wanted me to wait 72 hours! What good is that going to do me, I need it within 24 hours of my chemo.
The blood tests that I had before the chemo showed that my Hematocrit (RBC's) are low and I will be needing Procrit the next time I go in for a treatment which is scheduled for May 4th. That will be my last AC treatment and then I start Taxol. We are almost to the half way mark with the chemo and also 75% done with the AC!! Thats something to be proud of I think
I sat next to a lovely elderly lady while I was getting my treatment and she was getting hers. She told me that 26 years ago she had breast cancer and they did a bilateral mastectomy with lymph node removal. She said that at least 4 were positive for cancer. She elected at the time to NOT have further treatment and she lived 26 years. She recently had a car accident where they had to do some CAT scans and MRI's and found cancer in her brain and spinal cord that spread from the BC. She is being treated now for that and she is a true inspiration to me. While she was talking to me she welled up with tears in her eyes saying that both me and my DH had a great attitude and that was half the battle. I hope I get to see her again but she usually comes on Fridays for her treatments and I go on Thursday's. What a sweet lady and I wont forget her.
I had some issues getting home right after my treatment yesterday and I think that the delay in doing so is part of the reason I feel like crap. We got hung up because not only did the insurance company give me a problem with getting the Neulasta the pharmacy gave me a hard time also. Granted we had to go to another pharmacy than we usually go to but they didnt try to go out of their way to help me and I was so distraught over the fact that I needed this shot within a certain time frame that I started to cry right in the pharmacy. All I kept thinking of is those stupid commercials that show how much this particular pharmacy goes out of their way to help people. What a load of sh*t that it. CVS sucks and I have had so many bad experiences with them that I can freely say it without feeling badly about it. I felt so sick that I didnt care who was there and who saw the lady with the scarf on her head crying. Maybe that will make them realize that there are a**holes in charge of deciding what meds we can get and cant get. It makes me so angry. DH had to go all the way down to the Dr's office to pick up a dose so he could administer it by lunchtime when it was due. Damn insurance wanted me to wait 72 hours! What good is that going to do me, I need it within 24 hours of my chemo.
The blood tests that I had before the chemo showed that my Hematocrit (RBC's) are low and I will be needing Procrit the next time I go in for a treatment which is scheduled for May 4th. That will be my last AC treatment and then I start Taxol. We are almost to the half way mark with the chemo and also 75% done with the AC!! Thats something to be proud of I think
I sat next to a lovely elderly lady while I was getting my treatment and she was getting hers. She told me that 26 years ago she had breast cancer and they did a bilateral mastectomy with lymph node removal. She said that at least 4 were positive for cancer. She elected at the time to NOT have further treatment and she lived 26 years. She recently had a car accident where they had to do some CAT scans and MRI's and found cancer in her brain and spinal cord that spread from the BC. She is being treated now for that and she is a true inspiration to me. While she was talking to me she welled up with tears in her eyes saying that both me and my DH had a great attitude and that was half the battle. I hope I get to see her again but she usually comes on Fridays for her treatments and I go on Thursday's. What a sweet lady and I wont forget her.
Subscribe to:
Posts (Atom)