Monday, June 17, 2013

Spilling the Beans

Hi honeys!

I hope you are well. I have missed posting here, but I just haven't had the mojo.  I have been keeping my nails polished though.

We went out to dinner for our anniversary.
I wore these patriotic nails.


I have been photographing my hair when it looks nice because I will lose it in a few weeks.

We went out for my 50th birthday.

  I checked this item of my bucket list: Visit lavender farm in bloom.

I got two free wigs and some free makeup from the American Cancer Society!

And I decided to write something I am very nervous to publish, but I have wanted to do it for a long time.  I have been keeping myself to myself for a long time now. Now that I have cancer, I feel that maybe I need to go ahead and say what I want to say, because maybe it could help someone else to talk about these things.  And I love helping people.

I have decided to write here about my experience with getting HER2 positive, hormone positive Stage 1 breast cancer at age 49 in a couple of  new blog features. One I will call After the Cut, which will detail my treatment after lumpectomy. The other one will be Platinum Linings, where I would like to make lemons from this lemonade and focus on the positive things that happen to me as a result of having breast cancer.  I would like to share aspects of my recovery with you in updates, I will mostly cover things you would not likely expect or know about if you have not had this treatment, or were familiar with it.



Most of us are "AWARE" of breast cancer.  I was, and I had some knowledge of what happens to women who get it. They need a lumpectomy or mastectomy, maybe chemo, radiation etc.  But there is much much more to know, as I am learning. I will be writing about the effects of my treatment as they relate to my nails especially, and to my life in general also.

I am afraid I will not survive the chemotherapy treatment, so I want to document what happens to me, and the hope is that someday I will look back on this dark time and see how wrong I was.  My body is super sensitive to medications.  I had the terrible experience one time of taking a medication that resulted in my life being turned upside down.  I have often thought of writing my story of what happened to me, it would make an interesting horror movie I think.

Short story version, when I was in my former unhappy marriage, I took an antidepressant. It caused me to feel happier.  Very happy.  Way too happy.  So happy that I could no longer function in my activities of living. Do you know what I am talking about here?  Possibly not, manic depression is not something you may be familiar with.  I never tell anyone this, it is so humiliating.  I was diagnosed as manic depressive - in other words, the antidepressant caused  me to become MANIC - and tagged with a diagnosis of BIPOLAR DISORDER.  This is a documented phenomenon that occurs in some patients who take anti- depressants. I didn't know this could happen, if I did, I wonder if I would have taken the anti depressant anyway? Perhaps not.

So I got really happy, what is the problem? Symptoms I experienced in mania were:

NOTE: This all happened in my initial severe episode. I do not have these levels of symptoms any more. Now I am able to recognize and stop an episode from getting this bad. The first time I didn't know what was happening to me, so it just ramped right up.

Agitation - a very upset irritated and angry feeling
Hair trigger temper - Part of this was from PTSD from multiple traumas and abuse I have experienced in the past
Mood swings - Anger to crying in moments
Overspending - I thought I could start business or justify spending more money than usual because I think I am very smart and powerful
Loss of Concentration - I could in no way organize my thoughts to do a skilled task like average numbers
Over sexualization - I was taking actions to be with men other than my husband
Drug and Alcohol abuse - I was self medicating with alcohol and weed, to calm myself and relieve the mental anguish
Delusional - I had ideas that I could start a successful business sewing pillows which was pretty strange for me, or that I could do things or affect change where I could not, like telling my boss how he should do things as if I were his boss. Not a good career move!
Paranoid - I was thinking that people were talking about me, in a bad way, which they probably were based on my behavior.
Outgoing and Extroverted - I was suddenly speaking with strangers, something I never used to initiate I am a total introvert by nature.
Pressured speech - the words cant come out fast enough, nonstop talking/ranting


"manic depression is a frustrating mess" - Jimmy Hendrix had it right.

The worst thing now I experience is insomnia, mood swings, agitation, and I have some large remnants of a bad temper.  I have to be careful and make sure that if I start not sleeping I need to just lay there and try because that is how the mania starts.  Once I begin a pattern of sleeplessness it will begin to repeat itself and then I am manic again.  I would say that I am doing really well with it now, it is completely in control now, it is almost not a factor in my life at all anymore.  I just have to be sure to maintain good "sleep hygiene" and go to bed and wake up at the same time every night. I feel that it knocked my confidence down a huge amount, but I am close to over that now, almost twenty years later.

So now, when my doctors are telling me that I  need to take chemotherapy medication with severe side effects I am terrified of having my life altered by medicine again, not in a good way.  I could die immediately, or die slowly from the effects of the regimen that I have to take.  So here is why I had trouble to decide to take the therapy.

If I take the chemo, I will improve my chances of remaining disease free by 12-15% or so.  I was told something like 8 out of 100 women will be alive with no cancer in ten years because of Herceptin, the special drug for my HER 2 + (positive) cancer type.  But, 4 out of 100 women will have heart failure from the medication, which may be irreversible, and can happen any time after the medication is administered. There is a risk that I may die from this or the other chemo drugs, or complications of treatment, quickly or slowly, though small.  But, I remember the odds of my getting HER 2 + cancer at 49 years old were less than half a percent, so small odds don't mean all that much to me now.

I still have trouble believing I have HER2 + cancer. The only way I know is the lab tested my cancer, twice yes, but the test has a 40% error rate.  So in my mind there is a still a chance the tests are wrong. I am putting my life on the line based on some test results in a lab somewhere, that I don't trust completely.  This is the hardest choice I have ever had to make. There is a more accurate test I could have had done, but my oncologist poo poohed me, saying if the inaccurate test was done twice it is probably right. But what if it isn't????


Since I wrote last, I have been struggling with the decision to take chemotherapy. It is a very harsh eighteen week regimen with additional treatments for years, with life threatening risks.  I made the decision to take the chemo.

I have been very fit and healthy up to now. so I am reluctant to pour toxins in my veins that can potentially kill me.  However, I am convinced that the cancer I have is aggressive enough to warrant such a harsh treatment.  HER 2 + is very aggressive cancer type and tends to recur pretty fast, most of the time within five years.  If I have no chemo, there is a better than 25% chance that the cancer will be back within five years and at that time assuming our current technology, it will not be curable at that point.

The chemotherapy has risks, the drugs have side effects that can prove fatal, however rare.  I will lose my hair in three weeks.  I just had a surgery to put a "port" in my chest leading directly into my jugular vein, so the chemo can be injected there instead of my arm veins. The reason is that the chemo eventually ruins your arm veins, it is so harsh.  Or if the chemicals leak it will kill the spot on my skin where it touches!  ERMAGERD.

So I start chemo tomorrow Tuesday June 18th. I have to sit with an infusion going into my vein for five and a half hours that day.  First they give anti nausea meds, and other meds to help with the effects. Then one chemo drug for one hour, then another for another hour, then Herceptin for an hour and a half.  I will watch the drip drip and wait to see what happens to me.  I may have a reaction right then and have to stop the treatment for good or just temporarily.

I could have an allergic reaction right then or in a few hours or days : (  I am sure that is very very rare, but I prepare for the worst and hope for the best.

The odds are very much in favor of a full recovery for me.  With the treatment there is an 85% to 90% chance or better that I will be free of cancer and alive in five years. I am doing what I want when I want.  I am appreciating what I have and the people I love more than ever.   I understand if this subject is not your cup of tea. It is not mine.

Thank you for reading and for your wonderful support. Thank you so much.
lovenailpolish




23 comments:

  1. My gosh, I am so so SO sorry to hear that =((( I'm so glad that it's in stage 1! You're smart to take chemo... and I understand your fear of side effects, especially the heart failure and allergic reactions but those are very rare! I will be thinking of you... big big {{HUGS}} and remember: you are not alone!! Drop me a note if you need anything: zabucha@sbcglobal.net

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    1. Thank you for this Gosia. I appreciate your kindness more than you can ever know. Thank you for the encouraging words. Believe me they all help! Every little bit helps!

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  2. You are very brave and courageous for posting this. My heart and thoughts are with you for tomorrow and in the weeks following. You are not alone. xo

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    1. Hello! Thank you for commenting here with such wonderful words right when I needed them most! Also your blog is amazing, now following you too. In four years of perusing the nail blogs, I don't get a WOW from nail looks much anymore, but I got that from yours today, so bravo on your skills there

      I came through day 1 with flying colors. I barely notice anything yet. : D

      Thank you for encouraging me. I am taking all these well wishes to my heart and keeping them close. I do not intend to go anywhere, I am still bursting with ideas for my blog!!! I will stay strong and hang on and try to become an inspiration to others, like those who have walked this path before me. Thank you from the bottom of my heart.

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  3. I tried to comment, but it seems my Google account glitched out for a second, so I appologize if this comes through twice...but Stay strong my polished friend! I will be thinking of you as you go through this journey...know the nail polish community is supporting you with love! Stay STRONG! Have HOPE! Have a milkshake during chemo...that always made my dad feel better and made the time pass...

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    1. Hi Em, I can't imagine a circumstance where you would ever need to apologize to me dear. You have been so kind to me since we first met on the net and you really touched my heart with your story of your father, not so long ago. We have never met, but I sense that you are a very wonderful, beautiful and caring person, it shines through everything I have seen you do. Thank you for taking time to comment here and give me this super great tip from Dad. That is really the one thing I forgot to take care of yesterday.

      You see, I iced my hands, head and feet to protect my hair and nails. But guess what I forgot, to ice my mouth. That is supposed to be really helpful for the mouth sores, it constricts the flow of blood to your mouth and prevents the chemo from concentrating there as if flows in to you. Guess what I stupid did, I drank hot tea! Thank you Emily, for reminding me !!!

      Thank you so much for your support Emily and for keeping me in your thoughts. Thank you : D

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  4. It's so good to hear from you again...
    I see why you afraid of the side effects of the chemo, but I think it's the safest thing to do - you are in my thoughts and I send you a warm, big hug <3
    Oh, and a belated happy birthday!

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    1. Yes, I agree Maria, I think you said it right. It is really safer to have this treatment than not to. This cancer business is not playing. I sense that you are also a WOW (Woman of Wisdom), I feel myself becoming one, so I am beginning to recognize others. Thank you Maria for your kind words and wonderful support. I can not express how much this helps. I hate to ask for help, but I knew if I told my story and asked for a bit of support here, it would be alright, and my friends like you would make me feel okay about having problems, and would offer me the support I can use right about now.

      Hey, thanks for my birthday wish! You get the prize for noticing and commenting on my big milestone 50!!! I never dreamed I would feel so amazing and feel more fit than ever at fifty. It ain't so bad on this side of the hill after all! LOL I am telling myself this is year zero, if I get through this year, I am born again. Another lifetime's worth of polishing and sharing with my friends I hope!

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    2. I can see why you feel like year zero - you will come out of this tired but stronger and will be OK again :)
      My 10 year older mile stone is in the beginning of September LOL, then suddenly I will be closer to 70 than to 50 - that's a though one...

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  5. I think it's amazing that you are going to post about your journey!! I know you are going to have the will power to get through it all. Any emotion you have on the ride is fine! You are allowed to be all over the place! :)

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    1. Hey there buddy! Thank you Arielle, for your support. You are absolutely a shining star and a person I always can count on for an uplifting word. Thank you Arielle for your support, I cannot express how much your kind words have the ability to cheer me, and give me encouragement to just be me! Thank you for helping others and inspiring us to be more of ourselves all the time : )

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  6. This all sucks! I wish I could be there to keep you company and try to take your mind off the Chemo treatment; I could stand on my head and juggle! ;) I sent a prayer up for you.

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    1. Hahaha! Thank you sweetie! You are one of the kindest people on the net I have ever met. Kelly thank you for your well wishes and unwavering support and friendship lately. You are an awesome person, I hope you know! Thank you for this sentiment, I will imagine you on your head juggling when I need a smile ! LOL You are a superstar!

      Hey everybody, please go support my friend Kelly at her blog and get to know her, you will be glad you did! http://kellsdiynails.blogspot.com/ Look I spammed me.

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  7. Since I'm a cancer nurse, I am pretty aware of this stuff although I don't do breast cancer. Mostly lung cancer. Doctors can spout all the stats they want and it may never ever correlate with you and your reactions. You have to remember that everyone's cancer is unique to themselves and keeping a positive gonna kick its ass attitude goes a long way. If you can please think this way not the way you're thinking now which is omg all this bad stuff is gonna happen. I am a firm believer in positive thought. You're a beautiful woman and if my gray hair was as pretty as yours I wouldn't have to spend so much on red dye! I had a shaved head back in the day and it was very freeing. Think about all the time spent on hair care gone! Rock that- hair always grows back! If you only knew what I've been through in my life you would understand where my kick ass attitude comes from! Use my contact tab and send me your email and we will chat! Please please try and stop all this negative thinking. Yes it does suck big ass time- but a lot of breast cancer can and will be beaten. You can do this!

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    1. Hmm Interesting ! Thank you for this Fingers! I know it seems like I am negative, and you are 100% right. But you know what? I was wrong about yesterday. It did not go bad at all.

      I have been through a lot too, and I am pretty strong. Stronger than I gave myself credit for, because really I have so far beat the bipolar without meds, and that is something that could kill a person.

      I was wanting to get your advice because I knew you were an oncology nurse, so thank you very much for your thoughts and encouragement. I know that the kindness and compassion of my nurses yesterday made my first day of treatment go very smoothly indeed. I didn't even want to leave I was enjoying getting to know Jill so much! LOL

      Thank you for your kind offer to correspond with me. That is a capital idea. You are such a super star girl!

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    2. Whenever someone says "hmmmmm interesting" it makes me wonder if I shouldn't have said what I said. Every cancer is different and treated different so that's why I can't speak to breast cancer personally since I do lung cancer. But I will say "told you so". You got all worked up over the chemo and nothing happened! You should be proud of yourself and realize just how strong you are. Take me up on my offer if you want, but I'm far from super star!

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    3. I am sorry, no please do not worry, I wanted you to express your exact thoughts to me, I know you have great wisdom in this. I was surprised a little because you thought I was very negative and I thought I was being sorta positive. That is how negative I was, mostly because of my past experience,I know I was really really scared. I toned it down for this post.

      I admire you for doing the work you do. I couldn't nurse but I love those that do their jobs in a healing way. Thank you for taking the time to visit me and give me the benefit of your experiences and opinion. I appreciate it and you greatly : D Take care and thank you again!

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  8. Thank you so much for sharing this. Will be thinking about you in the weeks to come. I hope the first treatment wasn't as bad as anticipated.

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    1. You are welcome, thank you for caring! I came through with flying colors, day two down! Thank you for visiting and encouraging me!

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  9. Thank you so much sharing your story and fears and thoughts. I am glad to see in your comments that you got through the first treatment okay and will be thinking healing thoughts for you as you continue along this path. I am sorry your gorgeous hair will have to be shed yet thinking your post-chemo look may end up being even better.

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    1. Thank you my lovely friend. I am totally into change and transformation, this is just my latest journey and I am becoming ok with it. I have always wanted to be a blonde, so now I can if I want!

      Yep I am pretty good so far! I think I can do this!

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  10. I hope the first treatment will be fine! =) take care

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I appreciate and enjoy your supportive and thoughtful comments so much! I really do love hearing what YOU think!

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