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
    

4 comments:

  1. I'm so glad you told this part of the story. I think - being southern women - we are raised to keep a smile on our face. And as Christian women we are raised to trust God, praise God, and sometimes I think we take that to mean that we can't share the nitty gritty details. Then... when someone is going through a really icky time like you did, they feel guilty for feeling bad because you *obviously* handled it just fine. *hugs* I'm so sorry for what you've been through. I think about the three of us: me, you and Kim - and all how optimistic we all were about growing up, growing old, living happily ever after. You and I never could have guessed we'd have these health issues. We never could have guessed she'd die so young. I'm proud of you and praying for you still! Love you, girl!

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  2. Hi, I am currently battling breast cancer myself. I have Stage 3C invasive lobular. I just finished chemo and I am doing my rads now. I had horrible side effects from the Taxol. Constant pain mostly in the legs starting two days after treatment and lasting 5 days. I was on Lortab to help with the pain. Thanks for writing this.. breast cancer is no walk in the park for sure..

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  3. Thank you Heather...we are around the same age as our parents when we all three hung out....we did have big plans but believe as long as we have breath God still has plans for us.....I had planned to contact Kim and then she was gone....we just never know..life if to short and we have to live it to the fullest....I am sorry about all the pain you deal with daily.....

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  4. Hi country gal..nice to meet. A pink sister..good luck with your treatments..take one at a time..don't look at the big picture...it can be to overwhelming...babysteps and before you know it you will be done....thank you for the post,,you got this...

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