had my first chemo!

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   Dear Bond and all-

I am new here and just caught up with this thread-

it is bizarre...as I started to type I received an email from my daughter with her new email address...it was like she was watching even though we are thousands of miles apart..

I spent four months going through chemo with my daughter and have been apprised of her continued side effects since...and yes I realize my observations are insignificant compared to hers...nevertheless, she will not be posting here anytime soon or ever, so here I am..

In September 2004 my daughter was dx with TNBC and her pathology report showed that her tumor was high grade and 75% invasive. After her quadrantectomy we both found out that we have the BRCA1 mutation. We met with several oncologists to determine what would be the best chemo protocol. One meeting we had was very unfortunate at a major NY hospital.

After listening to her advice....my daughter told her "I have a twin brother-should he get BRCA tested soon?"...the oncologist said "he doesn't have to test; he is your twin; he is positive"..me, "I don't think that's the way it works, doctor..boy and girl twins are fraternal...you would be correct if they were identical but that is not the case"..incredibly she then said, nonplussed, "hmmm, I suppose you MAY have a point"...as we left, I started to say something and my daughter said "I know, Daddy...I am not listening to her". To be honest, I don't even remember her advice regarding chemo. it might have been on the money..

in any event a four month course of AC/TAXOL was decided upon. One of the hardest things before she started her treatment was a decision she made to shave off all her hair and buy a wig. She had been advised that was the best course. I went with her to a hair stylist. My daughter's hair was gorgeous. When the stylist ran his hair clipper through the center of her head, I thought I would keel over...I saw the sadness in my daughter's eyes..The realization that this journey was really starting. After it was over, as we walked out, I told her.."you are beautiful...you were beautiful before and you still are".."oh, Daddy", and she melted into my arms and we both wept.

some thoughts on the chemo itself(in addition to the many good ones previously expressed on this thread)...

my daughter was advised to not eat foods she loved because they might taste vastly differently..she had what she described as a metallic taste in her mouth and found that to be good advice..

I brought my laptop to every infusion..I bought a splitter from Radio Shack...so that we had two sets of earphones and we watched movies together...she loves romantic comedies and that's what we watched mostly...also I introduced her to some of my old favorites like Sid Caesar..90% of the time...we held hands and then she fell asleep shortly after the movie started...the infusions I think ran about 3-4 hours...it was fascinating to me because although I felt my daughter was in a deep sleep..if I got up to go to go to the bathroom I would gently disentangle my hand and my daughter would say "Daddy, where are you going?"..

"to the bathroom, honey..sorry I woke you".."it's o.k. Daddy, please come right back, o.k.?" and I did and when I got back she looked fast asleep but her hand was where it was before and I would put my hand in hers and she would squueze it. Four + years and I can still feel that squeeze and I am now crying as I type.

we would talk as I drove her to her house and then when she got home she would crash...most of the time she went to her bedroom and I would read or watch TV till she woke...sometimes she would sit next to me and sleep on my shoulder..

the most important things that we focused on as my daughter's life was turned upside-down (and I recognize everyone's experience is different)

were-

1. this will be over one day...the clock ticks, sometimes agonizingly slowly, but at some point, normally, the infusions will end...

2. this poison will kill the cancer and save my life 

3. I must do everything I can to further reduce my risks of getting cancer, again-going through chemo again...for my daughter because of her BRCA1+ status that meant having a PBM and a LAVH/BSO. I am not recommending anyone here do anything...just relating my family's experience.

This August will be five years since my daughter's first surgery...She is NED...she is fit, active and at the same time still suffering from the loss of her breasts and her ability to have a child naturally...still has aches and pains..sometimes runs out of gas very profoundly...and has chemobrain..

But she is here and we deeply love each other and will rejoice on May 19th in Manhattan and I am sure have a great day in the city together..

Was the chemo worth it? With all my heart I believe it has given her, along with her surgeries,  the best chance to live productively for many decades. To enjoy her husband/siblings/step-children/ parents(don't know about the decades part with me..but you know what I mean) niece/nephew (with hopefully more to come I have six children..most of them unmarried)...she is also helping many teenagers get through difficult years in her job as a public middle-school guidance counselor.

Is there any guarantee in all of this? I am afraid, unfortunately, that with TNBC there are no guarantees but I think the chemo, often, vastly improves the odds...and yes, my love for my daughter and her love for me was immeasurably enriched by this experience. I know that sounds nuts to some but I believe it is true...so try and reach out and get some support somehow, someway to get you through the tough days..hopefully it is a husband/child/sibling/parent/dear friend/spiritual advisor or even a marvelous website forum like TNBCF. Try to feel the love...it's out there..one way or another it's there and it will nurture you..

and if you care about someone who is going through chemo please try to be present/supportive/loving in their lives as best you can..

My heart is with everyone here who has gone through, is going through or has finished chemo...May G-d bless all of you.

Please send your best wishes/prayers that my daughter will stay NED....Thank you, in advance, for that. Your support truly helps me and nurtures my soul..

I am with all of you, as best I can.

in your corner,

Steve

p.s. she rarely wore her expensive wig...it made her crazy hot especially combined with her chemo-induced menopause....but her beautiful hair is back...very curly and very grey..but beautiful as is she...

Edited by steve - Apr 26 2009 at 6:58am