Because knowledge is power?

In Uncategorized on November 19, 2011 at 7:18 am

Last summer I was on a camping trip and privy to a conversation two women were having about something called the BRCA gene.  At the time, I had never heard of it- but they were discussing the fact that having lost their mothers to breast cancer, they were going to undergo genetic testing and if they tested positive for this gene, which as I understood it could be BRCA1 or BRCA2, they were going to have prophylactic mastectomies to significantly decrease their risk of breast cancer.  I thought to myself at the time, “these women are out of their fucking minds…why not wait until you actually have a sign of cancer?  Why not just be totally proactive and get mammograms on a regular basis?  Why take the most aggressive and physically hostile and mutilating approach”.  Be careful where you throw stones- that’s my first lesson.

It is less than six months since I overheard that conversation.  Since that time, my sister has been diagnosed with breast cancer, had a double mastectomy, is undergoing aggressive chemotherapy- as if there’s any other kind- and was identified as a genetic anomaly when she tested positive for both the BRCA1 gene and the BRCA2 gene mutations that indicate a high risk for numerous types of cancer, breast cancer just being the biggest of the threats.  So, it was suggested that I get genetic testing too.  Turns out, my sister and I are both genetic anomalies- we both carry mutations in the BRCA1 gene and the BRCA2 gene.  Those women who I thought of as nut cases- I am now considering calling to make amends because I am currently undergoing initial assessment for not only a prophylactic double mastectomy but a full hysterectomy as well.  With both genes, I have not been offered other options- but wait- this gets better- or worse- oh, you know what I mean.

I was also diagnosed with Multiple Sclerosis 7 years ago.  Now- please see pics posted in this blog- to look at me, you would not think that I am a walking time bomb- and most of the time, I don’t think of myself that way.  But this discovery, of this pair of mutated genes that have caused four cancers in my father, two cancers in my sister and the death of numerous family members, has made me feel vulnerable in a way that I have never even contemplated allowing into my daily life.  I began researching this elusive BRCA gene to see what I am up against, and I could find almost NO information on people who tested positive for both genes- hence the start of a blog.   I believe that knowing everything about what you are up against makes your odds better of surviving- or at least muddling through with a shred of sanity.  So as my team of physicians assess my risk, both in the realm of cancer and MS, and we decide how best to proceed in order to give me the healthiest, longest life possible, I am going to fill you in on the progress.  I figure this way, when another person like me comes along and wants to find out just how much it sucks to have both BRCA1 and BRCA2 positive genes,  she or he can track a journey that will have a positive outcome- because god help me- this is going to have a positive outcome.  I have a seven year old son who will accept nothing less.

Along the way I hope to include info. that will help others, stories that will make you laugh your ass off, cartoons drawn by my ex-husband who somehow captures my likeness with uncanny realism in stick figure form, and photos of a life that is being lived- at all times- to the fullest.  I don’t fuck around- I know life is short, I know self-pity is a bore, and I may forget both of those things on occasion- so please feel free to quote me.  I have always said that all a woman needs is the perfect pair of jeans.  JEANS people, not genes.  Sheesh…

  1. You are awesome Amy! I look forward to reading your blog on a regular basis.

  2. Amy! MY GOD! Seriously? My heart is heavy with empathy, not sympathy.
    Wow. I find myself wanting to say something along the lines like “well, shit! this is typical of you!”. Thank you for opening this topic. Personally I have not been tested for the BRCA’s but with each year that passes I bring myself worry that I know could either be squashed easily or worry that would wake me up about how I need to take better care of myself. My father had 5 cancers before his 58th birthday. Dad was a smoker and drinker even during chemo… I am so sorry about your sister and
    I am so pissed at your body for doing this to you! If you have info about testing for the uninsured please share. ❤ ❤ ❤ ❤ ❤

    • Deni,
      I just posted a link on options for genetic testing for the uninsured. There are programs that vary from state to state, but you should be able to find something in Los Angeles, and while you are at it, make sure you find resources for free mammograms- I’m not big on preaching, I just know that prevention can be the key to everything. And don’t be mad at my body- she’s just doing the best she can with what she was given 🙂

  3. You know I have a few pair of your jeans that I still wear. You cannot have them back. They are comfortable. Like this blog, more entries. Write the truth, Levinson, and we will follow. luv Craig.

  4. I’ve got a pair of your jeans too that I love.

  5. you are strong and good and lovely

  6. BRCA 1 & 2 FMA! I ❤ U! XOX

  7. Although was pissed at you ,this is amazing and you my friend are amazing
    Keep posting and we will keep reading

  8. I love it!!! We will get through this together! I am so proud of you.

  9. Dearest Amy, thank you so much for sharing and for your courage. I already knew that you rocked, but now you supremely rock. My mom was diagnosed with breast cancer this summer and just finished a grueling bout of chemo (very true, as if there were any other kind). My aunt (her sister) and my paternal grandmother are both survivors, and I’ve been struggling with the decision to be tested for the gene, mostly because of the “then what?” question I’ll inevitably face. I can’t tell you how grateful I am that you’ve created this site. Sending you lots of love and strength and the power to keep kicking ass like you always do!!!!!!

  10. You Levinsons are all strong women; I know you will work your way through this. Although the news saddens me, I am amazed reading your blog and inspired! Blog on Amy!!

  11. Hey, I was on that camping trip! And I think I remember you telling Santiago to be careful where he throws stones.

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