Thursday, July 30, 2009

The Chosen One

Back so soon!

Last month I went to see a genetics counselor as recommended by my surgeon. The first meeting was a consultation to discuss my family's history of cancer. That appointment happened to be on a Monday morning following a Thursday chemo treatment (#2 in early July). Kim was here to help with Annabel and shuttle me around since I was still on drugs. So, yeah, I went to my consultation on drugs. Oops. Also, I was the very first appointment for my genetics counselor following maternity leave. I was distracted by that because I remember how hard it was for me to go back to work and leave Annabel at daycare for the first time. I had a lot of questions of my own, but I had to bite my tongue and do the genetics thing. And Bridget was great. She walked me through the whole family history as I have gathered it and then explained that she would send a letter with her findings, but that she would recommend that I go ahead with the test to see if I have a mutated gene that may have caused my cancer. We scheduled that appointment for July 21st. In the meantime, I had to do a little research to make sure that my insurance would cover the $3700 test. They do, so I went to the next appointment to give blood and sign some papers. Bridget told me at this appointment that there are 3 or 4 outcomes of the test (can't remember): either I would have the mutated gene BRCA1 or BRCA2, or I would not have a mutated gene or my test would come back saying that I had a mutated gene, just not one that is identifiable (in which case, the lab keeps the info on file in case they find a common mutation at a later time). She also explained that there was a pretty small chance that I would come up positive for BRCA1 or 2....I'm not sure whether she said 11% or 14%. My response: I would not be surprised. I wasn't supposed to get breast cancer either. We also discussed what would happen when she got the results of the test and decided that she should call me and we could talk about it over the phone. as Karen and Annabel and I were walking out the door, Bridget called me with the results of my test. And guess what? I tested positive for the BRCA1 gene. And guess why? Because of my Jewish heritage! Yes, people, I am one of the Chosen Ones and I have the gene mutation to prove it. Mazel tov! My Grandpa on my Mom's side (Schwartz) was Jewish and I knew that he was Slavic way back, but apparently that lends to my Ashkenazi Jewish background and thus my mutated gene. Ashkenazi Jews are apparently from Eastern Europe and apparently most Jews are Ashkenazi Jews. I am learning, so bear with me. My Jewish heritage has never been much more than a source of amusement for Scott. Now it is the cause of my disease. Thanks Mom!

So, what does it mean? I think it is a good thing (so far). I already have cancer, so I think it would have been really frustrating to have an inconclusive result. Now my doctors and I have more information about why and hopefully have better insight about my treatment in the short term and in the long term. I hope that it will help my other family members. If they are tested and test positive, then they are on the radar and will be able to get extra special screenings to catch anything that might come along. For example, the best way to detect breast cancer the earliest is by breast MRI and that is not standard procedure. It is expensive and from what I hear, hard to justify to insurance. Now, maybe Kim and my Mom can get breast MRIs instead of a run of the mill mammogram. It has some implications for men as well, but I really don't know much yet. I will be making another appointment to meet with Bridget to learn more. I am scheduling that for a time when Kim can be here to go with me and get the benefit of the next consultation. In the meantime, I asked Bridget to let my medical team know so that I can talk to my oncologist about it at my next treatment.

In other news, Karen's iPhone got wet a few days ago and she has been carrying her phone around in a gallon sized ziploc bag full of white rice. It is hilarious. Apparently the rice is absorbing the moisture. It's working! You learn something new every day, right? Second picture above is of me and my non-Jewish sister Karen, post diagnosis, pre chemo. (Same Dad, different Moms. I do not have a family tree prepared, but if you'd like the history, let me know and we'll schedule some time.)

My Dad came to visit one Saturday in mid-June to get Annabel a playset. We spent some time at Lowe's and picked out a really nice one. The installation guy came out and said that we would have to get the yard leveled before they would install, but the installation guy doesn't do grading. I have assed around over this for how long now? Anyway, I finally found someone to come out and level out the space for the play area. He is also going to put the playset together and it's FINALLY all in the works! It should be ready to go by Saturday. I am excited about it. Our trips to the park are fewer since cancer came along and it is so freaking HOT here. It will be nice to have this great play area right in our backyard. The first picture above is the progress so far.


  1. The genetic part is really strange. Never would have thought it could be because of part of your race. It is wonderful encouragement that the tumor is shrinking each time. You have been very strong through all of this and kept your keen sense of humor. Love you!

  2. L'chaim Katherine! That means "to life" in Hebrew. (You learn these things up in these parts.) I'm so in awe of you, your strength and wit during this incredibly difficult time. Kim tells me that Olivia and I may get to see you in Knoxville in two weeks!!!

  3. Being Jewish, I take offense to your words: My Jewish heritage has never been much more than a source of amusement for Scott. Now it is the cause of my disease. Thanks Mom!

    I am your 2nd cousin, your mom's 1st cousin and we connected recently thanks to you and your diagnosis. Your wonderful mom knew that I had the family tree and all who died from cancer. Actually, I have the brca1 also. I have joked that it is because my heritage but that's just not true. Women have brca1 and brca2 who are not Jewish, like you.
    I am a cancer survivor for 10 years and I have lost my mom, 2 female cousins (who did not have testing) but had related cancers. You hurt your Mom and the fact that your husband find's it amusing that you have some Jewish heritage because of your wonderful grandfather, my Uncle Natie who I adored, is abominable. If you want to be a true survivor, switch up your attitude to positive and don't blame anyone or anything. Yes, we are the chosen ones but 1 in 8 women will get breast cancer during their lifetime.

    I lost my 28 year old son last Jan. in a horrible tragic fire. I felt like it should have been me who got cancer again... but as my wise son Adam said, no one was supposed to die and be in the casket Seth is lying in.
    your cousin...... AM

  4. Katherine you're doing an awesome job! Laugh at whatever you can, whenever you can. Negativity and humorlessness is useless, let it roll off like water off a duck's back (as they say around here). It is the true mark of a survivor when the chemo kills the tumor and not your sense of humor. Keep laughing, it's good for you! Thinking about you!

  5. Your wit and sense of humor, especially during these times, is admirable. Please know that there are many people out here that are praying for you every day. Never lose that wonderful sense of humor - it will get you through the tough times. We're all pulling for you. If there is anything you need, let us know.
    Danielle White

  6. To "AM" (my second cousin):
    Congratulations on being a cancer survivor- I expect my sister will be in your position soon. Also, my condolences go to you and your family! I can not imagine how difficult your losses have been.
    Like you, I follow my sister’s blog posts. After reading your comment, I am enraged and frustrated you would consider this blog a good place to question Katherine's character.
    Since you are a cancer survivor, I'm sure you understand how helpful encouraging words and well wishes are in battling this terrible disease. Please understand this principle- IF YOU CAN NOT SAY SOMETHING NICE (or encouraging in this situation), DON'T SAY ANYTHING AT ALL. I learned that from my Mom (your first cousin).
    You know nothing about Katherine's past, present, or future nor do you understand her sense of humor or personality. Your "comment" is/ was totally out of line!!!! If you are offended, do us all a favor and STOP READING THIS BLOG!!!

  7. Okay, let's all calm down. The main issue here is NOT a matter of character, Kim. And it's not about a great sense of humor, either. We agree unanimously that Katherine is been blessed with a finely honed sense of humor. And her courageous battle with her cancer is not only admirable - it's awe inspiring, which attests to her character but barely touches the essence of it. All of you have known Katherine a long time but I have known her longest. I've had the privilege of sharing my body and soul with her for 9-1/2 months before she was born. I was there when she opened those beautiful blue eyes for the very first time and, I swear it, gave me the "Katherine look." I thought I knew what love was before she was born, but I was wrong. Katherine taught me how to love unconditionally and I carried the lessons I learned from her through birth, toddler-hood, adolescence and (ugh) teenage years as we (her two dads and I) raised up her, then Kim, then Jeff. And then they went to college and - SHAZAM! - they were gone for what seems like is forever. God, I miss all of them everyday. Motherhood, even during the worst of times, is the best gig I've had so far. (I reserve the right to change my mind now that I'm a grandmother - Annabel is, well, bella bella!)

    Children don't come with instruction booklets and I made mistakes - we all do! But, guess what! We all survived. I know pride is a sin, but I am fiercely proud of my kids - they are all incredible, generally happy, self-sufficient, and a tribute to the world and the universe we find ourselves living in today.

    I say that I've known Katherine the longest but I don't claim to know her best. She is a grown woman now and hand-picks her own friends (and those of you who she calls friends should be mighty happy about it because she's VERY selective). Her immediate family, as it should be, is her first priority. Scott is a rare and wonderful treasure - a perfect compliment to Katherine. And ANNABEL! Whoa! All of our lives changed dramatically when she entered the picture! I'm smitten with our little Peaches! I adore her and can't wait to kiss those sweet, soft little cheeks, and see her incredible smile. I want to memorize her gait, the way her hair falls about her perfect little shoulders. And just to get a glimpse of the "Annabel look" will change your life forever!

    So, here we are with a whole kettle full of Hurt Feelings’ stew. It's savory and sweet because of all of us who have banded together to support and love Katherine through her travails, and painful as hell! No one should have to go through the journey Katherine and those of us who love her, are experiencing. I take it very personally that Katherine has cancer. My worst fear is realized - I have, however unknowingly, given her the mutant gene that incited her breast cancer. When she wrote on her blog, “My Jewish heritage has never been much more than a source of amusement for Scott. Now it is the cause of my disease. Thanks Mom!” I felt like she had punched me in the stomach! And immediately after I read it, my laptop battery lost its charge and I didn’t get to read the rest of her entry. Ironically, she called me seconds after my laptop fizzled out, and explained her remarks. How it’s good to know about the mutated gene so the rest of us can take precautionary action to prevent it from happening again. It’s all about timing.

    The purpose of this blog, as I understand it, is for Katherine to express in writing what this journey through hell means to her and to better help her cope with the day-to-day anxiety, frustration, and pain associated with her disease. It’s a very good thing. On the other hand, some words should be heard from the horse’s mouth and not via cyber pony express.

    Now let’s all kiss and make up. Please.

    Love to all of you.


  8. I just want to take a minute to say thank you to those that have decided to turn Katherine's blog in to their own personal forum (by the way, that is sarcasm - sometimes you have to spell it out for people). It is repugnant to think that rather than simply click on to the next site, some would take time out of their day to make disparaging remarks to someone that is elbow deep in the scariest fight of their life. When Katherine started this blog, I am pretty sure it was in the hopes that she could tell her story, in her words, as it plays out to her so the people that care about her would be able to share in her experience.

    With that being said, when I log onto her website there are really only two things I want to read about. The first is Katherine's take on her fight with cancer - in her words and in her opinion (not in words that have been preapproved or cleared by distant family members). The second is a forum for warm wishes and positive thoughts and affirmations from friends - not a forum for publicly airing personal and embarrasing grievances.

    I know how much Katherine enjoys posting to her site, and have seen first hand how troubled she has been since others have decided to hijack her message board. It also upsets me to know that she is thinking about disabling the comment section in an effort to quell the recent arrival of some hateful and altogether misguided comments.

    I would hate to think that she would let the negative and destructive actions of a few thwart the empowering and life affirming wishes of many.

  9. I have some thoughts on all of this. Katherine is my best friend in all the land and I consider myself lucky to have such a wonderfully upbeat, optimistic and nutty, funny, fun gal in my life. It's not anyone's business really, but Katherine's shared her concerns with me. She struggles with her mortality, trying to be a good mom (which she absolutely is the awesomest!) and being a good wife to the man she adores(who could not be loved anymore than Katherine loves him). My friend is the most loyal, caring, absolute beautiful soul that graces us all. If she deflects some with a sense of humor that is misunderstood then I am sorry that you can't feel that experience. If your heart is weary and you still have a sense of humor then that is bold. If you have your one and only child, 18 months old that you want nothing more than to tend to, and do so in spite of feeling laid out then more kudos than genetic counseling. I visited the day Katherine had the port inserted in her neck and she felt bad, and Annabel was rooting around all over the person she adores, and Katherine adores her entirely-it was hard for Katherine. The beginning of being a mom feeling helpless, but she just took it. She winced, she laughed, she embraced life as she always does. Every time we communicate she wishes me a good day. I wish I had her ability to make others feel loved in spite of my own struggles. Katherine is selfish in what she adores, but selfless in giving of her sincerity to others. You have to know her or be ignorant to understand her humility in this struggle, and anyone who chooses to make this their own emotional battleground is choosing a poor forum. If you don't know Katherine or really care about her struggle then take your bat and your ball and go home.

  10. As a second generation Cuban, I would like to whole heartedly offer up the suggestion that due to the fact that Katherine is a mother bearing the unfortunate burden of the #2 cause of death in the united states with an adorable infant that she would very much like to be able to see grow old and develop, that during this difficult period that she can call me and my ancestors everything from wetback to greaser and in between. Basically anything except touch my ears. This comes naturally for me, as I imagine it should for anyone who can claim this hilarious and thoughtful woman as a family relation. It'd be a damn shame, and downright embarrassing for anyone who didn't offer the same sentiments I reckon.

    Although, seeing the outpouring of heartfelt sentiment from all the people who love and care for Katherine, perhaps your misguided comment was a blessing in disguise. I hope that during your times of trouble no one had the poor taste to make a rude attempt to shoulder their way into the spotlight as you so obviously have done. One last question - does the 'M' in your initials stand for Megan?

    Mario Villanueva

  11. btw, the Megan reference was not to the niece but this awful character we have known

  12. Katherine, keep up the good work! Say whatever you damn well please. I got verklempt reading how Jeff and Scott came to your defense (and Kim by email). I am thinking of you and praying in my own way.

    Daddy Bob

  13. Your 2nd cousin is a whack job!