Thursday, October 6, 2011

My journey through breast cancer part 2

i have had alot of people send me messages via text, email, fb, etc and  tell me thank you for sharing my journey through the medical side of a breast cancer patient and what they go through...but many said i did not talk about how i felt emotionally....wow!  i am good at talking about details, but never have been good at expressing my feelings....when i was first diagnosed i told God if he would get me through this nightmare i would pay it forward..i had no idea how, but he told me...girl...you so got the gift of gab, use it!!!!! tell everyone your story and how I got you through it...here goes...

my husband of 12 years and i had separated, but agreed to stay together for financial reasons...i kept my end of the bargain, but he decided not to...i was under the impression our bills were up to date since he took care of that...unfortunately, on may 6, 2009, he depleted our accounts and left me with a home that was in foreclosure...i had a 16 year old child still living at home, 3 dogs and a cat.....i had also been laid off from my job...it goes without saying..i was in freak out mode.....i had a part time job in the domestic violence shelter i still work at, but no way would that pay for us to live on...i was already looking for a job so continued.....on this same day my breast begin to hurt pretty bad...i ignored and focused on trying to find a solution for the facts my son and i were about to be homeless...may 7, 2009 my breast hurt so bad i eventually took ibuprofen to help with this pain...i sold everything i owned to help with the down payment on an apartment....may 8, 2009..my breast still hurt and i continued to take ibuprofen, but ignored....this was a friday and the weekend i worked at my part time job..i went to work and continued ignoring the pain...finally, that night may 8, 2009 at 11:22 pm i massaged my breast and put my thumb directly on a tumor....i immediately freaked out knowing ovarian cancer and breast cancer were friends and my mom had died 8 months prior from ovarian cancer....i reasoned with myself that i had a mammogram that was normal just 6 months prior so this knot had to be a cyst...my deep gut feeling told me it was not, but never in a zillon years did i think it was cancer..no way..there was no breast cancer in my family and i was 42 years old...but....i called my obgyn on monday and made an appointment for wednesday (ironic part is no pain once i found the knot...tell me God wasn't in that scenario - cancer does not hurt in the early stages) i go to see my obgyn and she thinks it feels "suspicious" so sends me for an ultrasound...after the ultrasound the doctor comes in immediately and tells me my knot is "suspicious" and he wants me to see a surgeon for a biopsy...at this point, i had not been scared..now, i am scared to death...i call my sister who does her best to make me feel better by telling me it was just a precaution...i still cannot imagine it's cancer, but go for my biopsy...the surgeon looks at my knot through an ultrasound and tells me it is "suspicious" and we need to proceed with the biopsy....i have always been told the more they do the worse it is..he takes 7 biopsies...i tell him that i had implants the year before doesn't he think it is just scar tissue...he tells me he hopes so, but we need to see and would call me by friday....as, i was leaving i will never forget the look on his nurses face... i knew it was cancer by her look, but still played it off....two days later, i get the call from my surgeon...he says, ms. hedges, i have the results of your biopsy back and i am sorry, but it is cancer...i was by myself with my sweet dog alex and i remember saying to him..no, dr. burns...this is barbie hedges....he says, yes, i know who this is..i said..well, do you have the right person's chart?..he says, yes, i do...i'm crying hard at this point..total mental break down...i felt like i just received the kiss of death....all i could think about was my mom and the chemo and all she went through and now i was facing it...what about my kids..i wanted to see them succeed in life..i wanted to be a grandmother and watch my grandkids grow up....this cannot be happening to me....i ask what stage..he tells me we have more test to run and for me to come see him in two weeks after the test so we could discuss the next stage of my treatment..my treatment??? after i got off the phone with him i called my sister and we both cried...she told me..we got this...don't worry...since my mammogram was normal he sent me for another one to compare...sure enough..my now knot that is officially a tumor shows up clear as day...i remember sitting in the waiting room stunned and alone...there was a lady in there with me...she said are you here for your checkup?  i told her no..they say i have cancer...she quits talking to me at this point..i think wow, now i know how my mom felt...people do that when you have cancer..they don't know what to say...a few minutes later the lady goes into another room and then comes to me and says..my sister wants to talk to you...she was in the mammogram room..i step in and she looks at me and tells me..listen girl...i had a lumpectomy, 11 lympnodes removed, chemo and radiation and i am now an 11 year survivor...your going to be fine!  that was the first strong and positive comment i had received from anyone and i will never, ever forget this woman for what she did for me...she gave me hope and showed me i was not alone!!!!  i wish so much i could see her now to thank her...God sent that angel to me......now, it was time for the breast mri..(check my pictures out on fb...my friends took them and by coming with me they made things so much easier)...finally, all test are done and it's time to see the surgeon for the final results...he walks into the room with the counselor and at this point it finally hits me...i have cancer...i got really pissy and just angry...he discuss with me and explains the differance between a lumpectomy and masectomy and gives me a choice of either..i wanted the masectomy, but had just been hired for a new job and no way could i miss 4 to 6 weeks of work so i chose the lumpectomy...i ask again, what is my stage..he tells me we will not know until i can take your lympnodes out and see if the cancer has spread...it had never dawned on me it might have spread to other parts of my body..i knew nothing about breast cancer and how it works...they try to give me books to read and i tell them no thank you..i don't want them...i was sooo angry by this point..why me? why now? what did i do to deserve this? i mean seriously? i left his office and went home to have my temper tantrum...i threw everything i owned that had any pink in it away and told God to kiss my a....and i hated him more than life itself....the next day i had a come to Jesus meeting and told God how sorry I was and to please help me...he told me...we got this...we got this and at this point i told satin to stand behind me and watch me roll....i had a sense of piece at this point....i then started my new job and ask my boss if i could have one day off...i chose a friday so i could have the weekend to recover from my surgery....unfortunately, i could not have this day off for 5 weeks so i cannot lie and say the torture of those 5 weeks not knowing if my cancer was in my body was the hardest thing i have ever done...i was able to come up with enough money to move into a cute apartment so that worry was solved..... i moved in the week before my surgery...my father came to my aide and helped me pay the rent so that i could afford the enormous medical bills that comes with cancer..

i am so blessed and have an awesome family and friends who supported me through all of this...i remember the day of my surgery being so nervous..not from surgery, but my results...i had 10 friends, my sister and daughter at the hospital with me and more family and friends waiting on the phone and hundreds praying for me....i will never forget waking up from surgery and my nurse telling me about her divorce she was going through...this was after she told me my lympnodes tested negative for cancer, which meant my cancer had not spread outside the tumor...i thanked God and then helped my nurse with her divorce issue..lol..we all celebrated at the varsity afterwards and i went dancing the next night against my doctors orders, but i did not care...i was celebrating...

i had been told that since my nodes were negative all i would have to do is some radiation...i was not scared of radiation so was excited...that was until two weeks later...because of my age they sent my tumor off to have a test called the ONCO DX done..this test checks for 21 diff genes and gives a prediction of a recurrence...huh?  i have never thought about it coming back...freak out mode again....once my ONCO test came back i was now sent to see my oncologist (4 weeks since surgery)..he tells me my chances if I take radiation followed by 5 years of tamoxifen only are 26%...that's pretty high in the cancer world...if i did chemo, it would reduce my chances down to 13 to 15%....i remember saying to my oncologist..so, what, you will do a couple of rounds?  he says no..if we do this, i am treating you no diff than someone who is stage 3 or 4..you get 8 rounds total..one every two weeks for a total of 16 weeks...WHAT?   i tell him no thank you...my sister and i leave and talk about it and she says..barbie, what if your cancer comes back?  your always going to wonder what if i did the chemo ...she was right so i called my chemo oncologist back the next day and we started the chemo the following week....

i will never forget sitting in that chair watching the chemo trickle down the iv drip and thinking i can pull this iv out and RUN!  i don't want this, i don't want to do this and crying as i watched it...i am surprised i did not kill over from a heart attack during this time...finally, the chemo enters my body and my sense of peace came back over me...i would be ok....the first chemo i had was red and is nicknamed the "red devil" because it is so mean....i called it the red devil until i had a pink sister tell me..no girl, that is the blood of Jesus entering your body...WOW!  WOW!  yes, it is and cancer is of the devil and chemo is of God...i was never scared of chemo again....

as i was taking my 7th chemo treatment a "little voice" said to me..barbie, you had estrogen positive breast cancer and your mom died of ovarian cancer..estrogen comes from your ovaries..you need to have a hysterectomy...WHAT!!! where did that come from..NO ONE had discussed a hysterectomy with me..i am almost done with chemo and just have 33 rounds of radiation..i don't have time for a hysterectomy...not happening!!!that nagging voice would NOT leave me alone so i went to see my OBGYN...she agreed it would be a good idea ...my oncologist did not agree......then i find out..oh and btw you cannot take hormones after the hysterectomy so you will go staight into menopause...nice....just nice.....now i was not only going to be bald, i was going to be crazy and sweat all the time..oh yea..don't forget i'm single now to....yea, call me sexy....

i plan my next surgery during radiation...i was not scared of the surgery, but of the outcome as far as my emotions from having no ovaries...would i be diff, would i cry or be angry all the time...so many thoughts went through my head....i have my surgery and remember sitting in the hospital bed waiting on the crazy to come....it never did (some would argue with that...lol)..i feel no diff...other than some hot flashes and am more sensitive..my breast hurt until i found my tumor.....i know that was God...he wasn't finished with me...i go for my follow up appointment after my hysterectomy and my OGBYN walks in and looks at me and says.." you are one smart woman...how did you know?"  How did i know what?  she tells me both my ovaries had tumoros 1.5 cm and 2.0 cm inside of them...they were benign..but.....my jaw hit the ground...could not believe it...the ultrasound prior to surgery did not show this...God has plans for me and I have to follow threw with those plans one day at a time...I promised him if he got me threw this, i would pay it forward and he would get the glory...i know that hearing about breast cancer can be annoying to some and quiet frankly there are times, i just want to forget about it and never say the word again, but i cannot...it's a promise i have to fullfil even if it annoys at times...there will be someone i speak to who will be diagnosed or have a friend or family member and will remember something i say and will have hope..just like i did when that lady gave me hope....

later taters and thanks for listening and ignoring my typos... i work on a computer all day and just don't care when it's personal....:)

Sunday, October 2, 2011

My journey through breast cancer

Two years ago today, I took my third chemo.  Amazing that I remember the dates so well, but I do...

I did my first breast cancer fundraiser last night and several of my pink sisters came for the early session with their children and others came for the later session..Benchwarmers and Downsouth Band were so awesome to support this cause and to realize what it means and I thank you for this....Also, a big kuddos to my friends that came to....

Last night I had a friend talk to some of my pink sisters and after hearing her and seeing her amazement at what BC patients go through, I realized I sugar coated my situation and maybe that was not a good thing because awareness is so important. Yes, I talked about the chemo, radiation and surgeries, but only the basic details...never what I experienced fom side effects, etc...My friends saw me working the two jobs and hanging out with my friends  I wore wigs so only a few saw me bald and much more.

I am going to now tell the parts they did not see...

1.  My first four rounds of chemo were called Andriamycin and Cytoxin.  They combined the two chemos.  Cytoxan - side effects were sickness and hair loss.  Andriamycin - sickness, hair loss and a chance of getting Leukemia within 7 years of taking it.  Before these chemos you take a cocktail of anti-nauseau medications to prevent sickness.  Then for 4 days  after you take the chemo, which takes about 4 hours, you take anti nauseau pills 4 times a day and hope it works.  For 8 days after chemo you give yourself an injection in your stomach of neuprogen (not sure I spelled right), which are white blood cells. Chemo kills your white blood cells so you have to replinish them.  I took these shots for 8 days after each chemo and then had 6 days off before my next round of chemo. 

     Side effects of the neuprogen (white blood cells) - severe pain in the bones primarily the larger bones like the sternum - with me it was my sternum...for ten days after chemo I had such severe pain in my sternum...it felt like someone was cracking open my chest cavity...I remember waking up in the mornings and dreading getting out of the bed because I knew when I did my chest cavity was going to feel like it was breaking in two.....

2.  My next 4 rounds of chemo was called Taxol - side effects after taking this?  Possible neuropathy, hair loss, nausea.  Before this chemo - 5 steroids called decadron 8 hours prior to chemo and 5 more decadron 4 hours prior to chemo - why?  severe allergic reactions to this chemo - when you arrive for the chemo you are given a 45 minute benadryl IV to prevent allergic reactions - don't forget the prednisone....results of these steriods?  NO sleep the entire night before and weight gain - length of time to administer chemo - 4 hours...then you go to work....lasting effect of Taxol - neuropathy - I took Taxol and had no side effects while taking Taxol other then the severe pain in my sternum from the neuprogen (white blood cells) and shortness of breath and of course weight gain....unfortunately, 50% who take this get neuropathy..what is neuropathy - basically, think of a coard to your lamp - the wires have a coating around it..if it did not there would be electic sparks, etc because of the wires being open...neuropathy is just like that...Taxol kills the coating over your nerves in a few places such as your fingers, toes and legs..there is only a 50% chance of getting this, but I did...I joke and say it is because of not having any sickness, I had to get something...neuropathy typically hits you in the middle of the night....It feels as if someone is taking a blow torch and shooting it up my feet into the top of my legs..I literally wake my self up crying from this especially when I first developed it..positive side is 2/3 of the people who get this from chemo will repair itself and go away after 2 years..January 2012 will be two years for me and I still have this..but, I am fortunate as the pain is much less then it was so I know some of that coating has corrected itself...there is medication that we can take for this, but I choose not to..why?  if it goes away, I will not know so I deal with it...

4.  Another side effect of chemo - chemo menopause - worse than typical menopause - severe hot flashes..imagine wearing a wig and having one of these hot flashes  - my flash usually lasted a minimum of 5 minutes...

3.  Cost - even with insurance I paid $250 per chemo for chemo and the mediations so $500 a month minimum increase in your bills.

4.  Psychological effects - hair loss - sitting at my desk at work on the 13th day after my first chemo and getting ready for the second chemo my hair started falling out..I remember getting mad at my oncologist because he told me I would not lose my hair until the 17th day.  I remember reaching up and just brushing my hand through my hair and coming out with a handful and throwing it away in the trash.  Within two weeks  I was totally bald.  Alot of people do not realize but when you lose your hair...it all goes including your eyebrows and eye lashes...nothing funner than waking up and you look like a martian...then your face swells from the steroids and weight gain...I had a lumpectomy, but cannot imagine the ladies who have a mastectomy and have this to deal with to...I hear all the time about how strong my pink sisters and myself are during this, but we have to be...our family and children depend on it, but sometimes this keeps people from really understanding what a cancer patient goes through..from finding the tumor to hearing the three dreaded words..."you have cancer"

3.  I had two weeks off and then started my radiation - 33 rounds - one per day...side effects are tired (think of how you feel when you have been in the sun all day - this is how a radiation patient feels daily)...severe burning..I had second degree burns from the back of my arm, to under my arm, the entire right breast from about two inches under it to the top of my chest...blisters all over...everymorning after sleeping and having to pull my arm up because the blisters were stuck together - painful....

4.  After my chemo and lumpectomy my radiation oncologist discovered my chemo oncologist made a small mistake...he did not run the BRAC 1 & 2 test on me (Gene test)..this was very important because my mom died of ovarian cancer and I had pre-menopausal breast cancer - If I tested positive for this gene the recommendation would have been double mastectomy and total hystertomy and more chemo...huge goof in my opinion...major stress during this time...good news is...I tested negative so treatments remained the same...

5.  Now, it is time to take my 5 years of tamoxifen - this is a estrogen blocker and helps prevent a recurrance of bc - side effects- similar to to chemo - hot flashes, weight gain, bone and joint aches. 

6.  Hysterectomy came next - 3 months after last radiation treatment - very easy surgery - no problems...side effects - menopause and because of BC no hormones can be taken so more hot flashes and problems with mental clarity  -

This is just an example of what a cancer patient goes through.  Even with all of this we still work, have children, husbands, grocery shopping, housecleaning, bill paying...and of course the fear of death and who will take care of our family if we do not survive...

Now, I have been finished with everything (chemo for 22 months, radiation for 18 months and 15months since my hysterectomy) except 3 years and 9 months left on my tamoxifen...and the neuropathy....I also have 5 years and two months left of worrying if I get leukemia from the Andriamycin and of course the scare of a recurrance...I am fortunate and my chances are 10%, which is very low...basically, what an average person has who has never had cancer so for that I am thankful....

Why did I decide to tell this now?  Last night, I had a girl say to me she didn't understand what thebig hype was about BC and she didn't care about it and didn't want to hear about it.  That's fine, but it made me realize the reason is - lack of knowledge...4 years ago, I had a normal and healthy family..Since that time I lost my grandmother to cancer, my mom to cancer, my aunt to cancer, my grandmother now has cancer, my uncle died, my father became a paraplegic, and the loss of my buddy Alex...I suppose 4 years ago I was ignorant of what cancer patients go through and their families so I do not fault the stupidity of this girl last night, but lack of knowledge so I decided to tell my one year battle...lets not forget all the stories a cancer patient has to hear of everyone's friends, family, etc that died of cancer...that is always my favorite..hearing that...but again, I am sure I did the same thing myself so blame that on the lack of knowledge...I think the worse if the pity looks....

I read this and think ..wow!  how did I do this?  Then I look at my pink sisters and see they have much more to deal with, as most have young children..i was fortunate and my children were older.....

This is breast cancer awareness month - become aware...one in 8 women will get this..100 women per day die from it and one man per day will die from this...and when you meet someone who has cancer...don't tell them the horror stories, but the positive ones..the only way they are going to survive is to  be positive....I remember when I first found out about my cancer a lady told me of a story of her aunt who foungth the battle and won..then she was killed in a car accident 3 weeks later...huh?  thanks for sharing that story...I remember listening and getting so excited her aunt survived and then WHAM....I have to say it took my breath away for a moment..

I thank God everyday for giving me another chance at life and am trying really hard to honor him and what he wants me to do...part of that was to start my young survivors support group....I know there is more, but am waiting on him to tell me what it is....if you meet somoone and has cancer or your friend or family member is diagnosed..do not tell them terrible stories..tell them about me and how I am a survivor..give them hope...offer to pick their children up from school or sit with them for the long 4 hour chemo...make them dinner...clean their house....drope a note in the mail or email just letting them know youarev thinking about them...trust me one day you might just need this yourself.....but most important remember breast cancer if treatable if found early...get mammograms and do your self check..remember my mammogram was normal 5 months prior to being diagnosed so both are so very important...

thanks for listening!

Barbie