Tuesday, June 27, 2006

Major Complaints

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.

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.

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.

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

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.

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

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.

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.

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.