Monday, April 24, 2017

Looking, Hoping, Searching for Answers



With my chemo treatments coming EVERY week now, I realize my posts may become shorter and pithier as I try and describe my various feelings and experiences. Much of this time:  emotions, side effects, etc., have become routine – mundane almost – in their regularity and familiarity. Although, I’m not immune to the abnormal reaction here or there (as you will read below) – my goal is to stay as boring and “average’ as possible through these next 10 weeks.


On the more "exciting" side, I have developed an allergic reaction from the new chemo drug – Taxol. It’s is a delayed one – it appeared 3 days post treatment during round one. A torso rash – looks like I have a pretty bad sunburn and it itches. Worried the bad reaction would keep me from round two, I was persistent to have my oncologist order higher doses of anti-histamines and promise that she’d come up with a plan for round two.

She did. Higher doses of steroids, along with anti-histamines to try and keep the allergic reaction at bay for round two. So far, it has worked. She also is in discussions with my insurance company to get approval to use an alternative drug to Taxol – Abraxane – which does not have the same adverse side effects as Taxol. The insurance company initially has DENIED her request - bastards. But neither of us is giving up. She has appealed and I have engaged assistance on my end to appeal as the “insured”. Anyone thinking this gal is just gonna take a “no” for an answer now, is sadly mistaken. And while I don’t like the idea of being hyped up on mega steroids for the next ten weeks – and my doctor isn’t thrilled about this either due to possible long-term effects - if I have to do so in order to get thru this, I will. Stay tuned for more on this one……

I received the results of my exhaustive genetic testing last week. As you recall, I was diagnosed with “triple negative" breast cancer. Approximately 10-20% of all breast cancers are diagnosed as triple negative. The triple negative refers to the three known “breast cancer receptors”: 1) estrogen 2) progesterone and 3) HER2. I did not test positive for any of these known receptors. Therefore, unlike patients who are positive to any or all of these receptors - drugs can be given to block the receptors as a course of treatment - the only course of treatment for me is chemotherapy.

Before testing, I was convinced I would find signs of why I have cancer – perhaps my genes would tell the story. Heredity. Perhaps the BRCA1 or BRCA2 gene. I almost hoped for a positive outcome in some ways just so that I would have some answers. But no. I tested negative for the entire exhaustive breast and gynecological genetic panels. A whole slew of genetic patterns examined for any sign of mutations, weirdness, strangeness….nothing.

As so here we are. I have cancer. No one knows why. There’s no known reason for any of it. What am I to do with that? I’m a person who likes things tied in bows. I search for the logistical, level-headed, reasonable answer for things. I helps to settle my mind. Gives me direction. A stated purpose for jotting a course. Instead, nothing. I may never know why I have cancer or if it will ever return. Because I don’t know what caused it. It keeps me up some nights. My mind races to find answers that just aren’t there.

Ten weeks to go in my chemotherapy. Seems like a long time to go – through June if I stay healthy and have no issues. To help the time go by, Liz and I have had several visitors stay with us over the course of my treatment to date. Along my brother (who remains my rock), and sisters-in-law (who planted an azalea garden for me!),
we've had and will have several old and faithful friends come stay with us and help out around the house and just be generally good company in the months to come. Along with a constant stream of seeing and hearing from folks, the short texts of just “thinking about you” mean so very much.   All of this has made a world of difference in my staying positive and forward thinking to when this ordeal is over and I’m once again cancer-free. It is a gift I cannot repay. Thank you.

7 comments:

  1. Colleen and Denny BuckmanApril 24, 2017 at 1:28 PM

    Jacki you are so amazing though All of this, don't ever give up. I know you won't, you have such a huge support system. We think of you daily, and keep you in our prayers. You always amaze us, hope you finally find out why you have cancer. Love to you and Liz.

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  2. I've been watching your fb posts and finally had a chance to read your journal entries. Thank you for sharing. I kind of love the idea of keeping it mundane and routine. Handling it all as it comes. So smart! Life is so mysterious isn't it. You are an inspiration for so much but most importantly by simply being there in the journey. Sending love! Pi

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  3. Go Jacki! Kick cancer's -- and the insurance company's -- asses! All the best from DSM (visiting), Patrick

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  4. Jacki - you are wonderful, so strong and amazing. I am thinking about you every day and sending lots of love and hugs your way. xoxoxoxxoxoxoxoxo!!!

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  5. Best wishes and hugs to you as you go through this!!!

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  6. Our thoughts and prayers are with you!

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  7. I've finally figured out how to get to blogs. I'm so computer tech ignorant it's sad. I knew you weren't avoiding updates as you're determined to keep your circle (far and wide) of friends abreast of your progress. Sorry your new treatment isn't treating you well and you're experiencing such discomfort, anger, frustration. To keep a positive spin rummage through your support notes, cards, emails, texts, smell the azaleas in Your garden and freshly mowed grass by caring troops. Not knowing why you got the breast cancer is frustrating, however you can have a positive out look - one and done! No he ed to worry that other families can be affected or feel like it's you had anything to do w why someone may get it. You can't beat yourself up over it. It makes me think in that maybe eating so healthy, organic avoiding pesticides, avoiding the air we breath as pollen, pollutants fly around, avoiding some of your favorite libations for the rest of you life don't need to come into play. This time next year you can Cinqo de Mayo w some of your best buds.
    I lost a child at birth some 40 years ago, there was no reason they could give me. It just happens i didn't do or eat something to cause it. But it is something I carrry w me and will forever, but I don't beat myself up over it anymore. I'm thankful for the children I do have. I think stuff is thrown at us to see if and how we handle it - so KICK ASS MOVE ON, Show 'me who's boss. You're tough, strong and have more support than any people I've known. We're behind you - ����Clara and Jim.

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