Citizen of the Month

the writing and photography of Neil Kramer

Citizen of the Month Wants a Cure

breast1.jpg

Sophia:  "Neilochka, you certainly love writing about my breasts on your blog, don’t you?"

Neil:  "Of course.  They’re the most exciting things I’ve had to play with since my Etch-A-Sketch."

Note to God:  Are you crazy?  Why did you create the most beautiful things in the world, a brilliant piece of female anatomy that comes in so many tasty shapes and sizes — and then come up with this breast cancer shit?

Sophia:  "You know, it’s National Breast Cancer Awareness Month.  Why don’t you say something about breast cancer?"

Neil:  "Like what?"

Sophia:  "You can talk about me." 

Neil:  "I can?" 

Sophia:  "It’s been a year."

It’s been a year.

It’s been a year since they found cancer in Sophia’s left breast.

Last year was pretty shitty.  This is why I was so glad that the Jewish New Year finally came a couple of weeks ago.  Maybe this year will be better.  The year had ended with my father passing away.  It began with Sophia learning she had breast cancer.

There was no history of cancer in Sophia’s family, so it came as a total shock.  It was a time of stress, fear and uncertainty.  National Breast Cancer Awareness Month is a great idea —  except when your life was just turned upside down and you suddenly became a "patient" dealing with breast cancer.  Everywhere you go, you are reminded of the disease.  At the supermarket, there are banners hanging.  You try to escape to the mall, and everyone is selling pink bunnies, slippers, bracelets.  Neither of us knew much about cancer, but we sat down for a quick education.  We read every medical site and every book possible.  We got the best doctors at Cedars-Sinai.  Sophia had a lumpectomy and through her own research, found out about a radical experimental radiation treatment.

Sophia was so brave throughout.

It was a new experience for me, as well.  I was supposed to be the caregiver, the "rock,"  but I was probably more of a "big stone."  Although I was always at Sophia’s side, I had this slight little problem of always being more nervous than Sophia herself.  I wish I could have been more like Sophia was when my father was in the hospital.  She can be a "rock."  I never had the strength to demand the best of everyone in the hospital, the way Sophia did for my father.

In fact, I found the experience so stressful, that two days before Sophia was to have her surgery, I got so tense that I ended up at Cedars-Sinai’s Emergency Room myself!  I don’t think the ER nurses ever really understood why my wife was calling me on the phone cursing at me for being in the hospital.

Many of you have emailed me through the last couple of months, asking why Sophia and I are separated.  The most common comment is "You write about her with so much love and admiration." 

There’s no one I love or admire more than Sophia.  Today, despite everything she went through, she is more beautiful than ever.  But, she is still on medication and dealing with continuous treatment and the side effects.  Sometimes, she gets down on herself or fears for her future health.  But she’s a brave and strong woman.  And boy, is she funny too.  I think a good sense of humor is really important in keeping yourself healthy.  On Saturday night, we actually worked together on that recent post on my blog — the one about the flowers and the "sticker."  When we finished it, we must have laughed for a half hour. There’s nothing more exciting to me than seeing Sophia laugh and smile.

Sophia’s sense of humor helped her maintain a great relationship with her doctors.  She was especially friendly with her great surgeon, Scott Karlan and his caring staff.  After her surgery, Sophia thanked him by ordering him a marzipan cake shaped as two huge breasts, with one a little bit lopsided, like hers was after the surgery.

I hope Sophia knows how much she means to me — whatever she is right now — my wife, my separated wife, my friend, my blog editor-in-chief, my dance partner, or the straight man in most of my blog posts.

I think I learned to be a better "rock" during times of hardship, even if I didn’t always say the right thing.  I still try to "fix things" when I should just listen.  Once a week Sophia goes to a group at the Wellness Community, a great place, where people with cancer, their friends and loved ones can talk about different issues.  One of the biggest complaints heard very often is that people just don’t know how to talk to someone with cancer, either out of insecurity, fear or stupidity.

In honor of National Breast Cancer Awareness Month, Sophia’s group did something special for "Citizen of the Month" :they made a list of stupid things people have said to them.  Let’s hope that reading some of these will help us avoid making the same mistakes.

15 things you should never say to someone with breast cancer:

But you’re so young!

How long do you have?

And you have such beautiful breasts!

Oh no, what are your kids going to do?

You shouldn’t be depressed because if you get down, you’ll waste what little time you have left.

God only gives you what you can handle. 

But you look so good!

Two people just died in our office from cancer — these things always come in threes.

Oh, no.  That’s so weird.  I just saw Melissa Etheridge in concert last week.

I’m wracking my brain.  What could have you done to cause it?

Do you use paper or plastic? — because I read plastic can cause it.

At least with a double mastectomy, you’ll be even.

Don’t say the word.  Just say "C."

Now you’ll see if he really loves you for you.

I know how you feel.

Here’s something you can say:

Sophia, you’re amazing.  Congratulations on being a one-year breast cancer survivor — and getting healthier every day!

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69 Comments

  1. Hey. My mom had breast cancer last year. Congratulations to you both. And I’m sure you’ll forgive the smiley. 🙂
    And Neil, you might have been a big stone, but as long as weren’t firmly lodged in Sophia’s shoe, I’m sure she was grateful.

  2. Sophia,

    You are amazing woman for so many reasons. It has been a pleasure to get to learn what a fascinating individual you are through Neil’s writing. (Don’t tell him, but I think you should be the star of the show that is your friendship with him!) You have the kind of strength of character that I would love to possess.

    You’re a wonder, and you live up to your name. You are wise.

    MA

    P.S. Neil, were you present when someone said any of those horrible things to Sophia? Did you kick them in the shins repeatedly?

  3. Props to you Neil…..thoughts and prayers go out to your life mate ;).

  4. You ARE amazing, Sophia. Congratulations.:)

  5. That is such a trial to have gone through. May you continue to thrive and to inspire others, Sophia!
    One blog friend of mine is a survivor and also a young woman. She had a lot of trouble dealing with her youth and this disease. She found a good support network in the Young survival coalition:
    http://www.youngsurvival.org/

    Namaste.
    ~HDJ

  6. I too have breast cancer, ran into an old neighbor who told me her hubby just got out of the hosp, I of course was concerned, and asked what was wrong, she replied “Diverticulitis”…I remember in my mind thinking, you DUMB ASS, he’s gonna take some fiber and be fine, me I have 6 surgeries ahead of me and FIVE years of medication…People say the most stupid things sometimes!

  7. Wow, thanks for sharing that and I’m so happy Sophia is doing well. Separated or together, you two remain high on my list of Inspirational Couples Who Understand the True Meaning of Relationship.

  8. Congratulations Sophia!!! You’re an inspiration. Neil always says such wonderful things about you. You both are extremely lucky to have each other.

  9. Sorry… my friend’s site is “the Yoga Chickie” at http://www.laurencahn.blogspot.com/
    She writes very well and says a lot about what she has gone through in plain language.
    Namaste.
    ~HDJ

  10. AWW that’s really nice…I know people who are in remission. It’s scary and I always try not to mention it. I would never ask how long they got LOL. I would ask something like, “What’s for Dinner?”

  11. Congrats to you Sophia. And as usual great post, Neil.

  12. Sophia is amazing! What a wonderful testament of her strength, and the two of you together, putting this post out there for National Breast Cancer Awareness Month.
    Great post Neil & Sophia!
    3T

  13. Congratulations – may a life unseen begin to unfold, for both of you. One of the greatest lessons in life, that I have found thus far, is finding out just how strong a person you really are.

    ~A

  14. Beautiful post Neil. And Congrats to you Sophia! 🙂

  15. Congratulations, Sophia, not “only” for beating cancer, but also for being so strong and inspiring. This was a wonderful post.

  16. Sophia–so glad to hear you are doing well.

    Neil–you were there, and that’s what counts. I’m sure Sophia knows it too.

  17. Hey Neil Iam so glad you stopped by my blog because otherwise Iw ould not have found this amazing blog. YOu are now permanently linked to mine. This story was fantastic and let Sophia know.. Congrats on being a Survivor. What a strong woman she is.
    Thanks for recognizing the struggle that millions of American women go through that our government refuses to notice.
    T

  18. Sophia – you are amazing and a very good person. Congratulations on your one year mark, may you have many, many more.

    Neil – Thank you for sharing

  19. gorgeous…congratulations, sophia. and neil, i am at a loss. your sentiments, moving. you both are lucky to have each other in your lives, in any capacity.

  20. Guilty of “I know how you feel”, at least to one person. I regreted it immediately after saying, even though at the moment I thought I did know. Nobody does, we all have our own stories.
    Sophia, you’re amazing.

  21. I don’t think I’ve been at all puzzled by the Neil-Sophia relationship. Makes sense to me, especially given what both of you have been dealing with. (Whatever that means … like I know what I’m talking about.)

    Congratulations Sophia … I can’t say I have a clue of how it feels to get news like that, or deal with this kind of thing, but I’ve always thought that one of the things that would most bother me would be how it affects how I feel – mood, emotions and all that. In other words, I’d be pissed off, sort of like, “Shit! I don’t want to have to feel like that.” Not sure that makes sense, but I think everything in life goes better when you feel up rather than down and this kind of thing brings you down (for obvious reasons). I’ve thought this in various bad situations in the past, that sense of, “I don’t want to have to feel this way!” It can take so long getting back to where you want to be.

    Anyway … I think one of the amazing things about this is the humour you and Neil manage to achieve (at least through the blog). I envy that.

    And I had an idea … now that your group has listed what people shouldn’t say, perhaps you could come up with things people could say. You can also get them printed up on cards. Then, when you meet someone who is unaware of the cancer situation, you can hand them one as you tell them. And they can reply with something from the card.

    Myself, I don’t usually say the dumbass things but I sometimes make it worse. In trying to avoid something stupid, I’ll sometimes respond with a non sequitur, something like, “Nice shoes. New?”

    Congrats again, and thanks both of you for these great posts.

  22. I love boobies! (And the women attached to them.)

    That’s going on the list, isn’t it?

  23. here’s to hoping you have 50 more.

  24. Beautiful post, thanks so much for sharing. Your writing always brings out my emotions (and, no, I am not a very senstive person)–I laugh, I frown, I get a little tear–it’s wonderful!
    And, whatever y’all’s situation is, I’m always happy to find people who truly love and care for each other. Those are the stories that give us hope and dreams for our own futures!
    Again, thank you!

  25. lovely post… sophia, here’s to your continued health, that’s so fabulous it’s been a year already 🙂

    thank you for that list. hopefully i wouldn’t have said any of those, but now i’ll be EXTRA certain not to. “these things come in threes”!?!? are you kidding me?!

  26. Neil, this is beautifully written. Thank you. I think you both are very brave.

    And continued good health for Sophia!!!

  27. To embrace it is half the battle. Sounds like you both have. My good friend JoAnn has been a breast cancer survivor of 8 years. She got a tattoo around her nipple when they implanted her fake breast. Her reasoning, “I’m already going through all that pain, why not have a little fun too?”

  28. Thanks for bringing me through the whole spectrum of emotions over the course of about two minutes at work!

    I actually just had a similar conversation with someone close to me who recently went through it, and she really doesn’t like the reminders being everywhere. Needless to say, she will not see me with my pink rubber bracelet on anymore!

  29. I am so laughing at that list. “How long do you have left?”
    My answer would be, I don’t know but you’ve got about ten seconds unless you leave my presence immediately.
    “At least with a double mastectomy, you’ll be even.”
    Response: And with a labotomy you’ll be smarter. Good grief! Sophia, congratulations. Keep it rockin’!
    🙂
    ~L.

  30. Sophia IS amazing!

    My mother just finished radiation a month ago. It’s still a shock to see her little bald head – she doesn’t even cover it up anymore. But I think the best thing I could have said to her is when she was done with treatment I sent her a card that said, “My mom totally kicked breast cancer’s ASS!” She loved it.

  31. Someone I love died of breast cancer 2 years ago after struggling with it for 10 years. Thank you so much for this post.

    I know this is none of my business, but I hope you and Sophia can work things out. It sounds like you are great for each other.

  32. Sophia, you are amazing. Congratulations on being a one-year breast cancer survivor — and getting healthier every day! I hope those shots are of you, they’re great. And good for you Neil, sticking around Sophia to hear her laugh.

  33. What a beautiful post, Neil! I really think you make up for all your “stone” moments through your reflections, thoughts, humor, writing, and pure love for Sophia! Those qualities are definitely where your “rock” shows thru. (And not with any 75% off sticker on it, either! …Alright, Alright… quit thinking what I know you’re thinking! LOL!)

    You two are just so great. Whatever definition you put on your relationship together – I hope it lasts for a very long, healthy lifetime!

  34. I have been a little baffled by the neil-sophia relationship, put it all down to the complexity & many different types of relationship.

    what has always shone through is sophia’s strength & ability to look life in the face, and say whatever she wants to say, without fear. to see things how they are. knowing this about sophia may help explain why she is an inspiration to me in the approach she has in dealing with things. no doubt she was before all this, and will continue to be long after it’s a shade of past. always the inspiration. thanks sophia.

    that feels odd to say, since I’m a stranger, twenty-thousand kilometers, a metric system and a hemisphere away. but it’s all true, nonetheless.

  35. What a beautiful post. My aunt is a one year survivor as well. These women are amazing, and every time another survivor reaches out and talks to my aunt about it, wherever we happen to be, I’m more in awe of their strength.

  36. Two people just died in our office from cancer — these things always come in threes.

    If you wrote it into a movie, no one would believe it.

    Congratulations to Sophia! Hooray for Neilochka for trying to be a rock!

    Mostly, hooray, hooray for healthy boobs!

  37. Sophia, I’m so glad to hear that you are doing well. I can’t begin to imagine what that must have been like. (Love that you sent the doctors a boob cake!)

    Neil, thanks for another beautifully written piece.

  38. Thanks for another great, touching post… My mom and dad were diagnosed with cancer the same months — six years ago — breast and colon respectively.

    I just ran in the Susan B. Komen race this Mother’s Day in her honor. She and my dad are surviving.

    Nancy

  39. Absolutely beautiful.

    This is one disease whose ass I really want to kick. Sophia, I’m so proud of you for giving breast cancer such a good ass whooping. You really are an incredible woman. Congratulations to you for your one year battle; may you continue to be victorious for years to come.

  40. Congratulations on a year to Sophia, and a wonderful thing for you to have written about, Neil.

    Things aren’t always as simple as they seem, but it’s clear that you care deeply.

  41. My sister is currently fighting brain cancer. She worked with me earlier this year to produce a post we called ‘Cancer Etiquette’. One of the commenters is a woman who wrote a book by the same name.

    My thoughts and prayers for both you and Sophia.

  42. …but the question still is….and you have never answered it… why are you two seperated?

  43. She’s Russian! What did you expect?? They are the toughest of the toughest … Haven’t checked in here for 2 days and I see I’m missing a lot of great stuff! (the post about your Mom is TOO MUCH!! HYSTERICAL!!)

    They say people only get what they can handle and I can tell you for sure – that I wouldn’t be able to handle something like that. (Is that going on the list? whoops …)

    Having said that – if we knew how insignificant our bodies really are in the grand scheme of things our life would be a lot more focused on what’s important. It’s just a container and is replaced as easily as slipping on a new shirt.

    Refua Shlema Sophia – hope you take a second to think about where everything comes from and why. And I wish for you that you won’t have to come back to this world and suffer through another whole incarnation.

  44. Congratulations on your first year without cancer, Sophia, which is not a terribly original sentiment, now that I think of it; everyone else in this thread seems to have beaten me to it. Well then, never mind, onwards and upwards, as they say. I could congratulate you on not having any number of other diseases, I suppose, but it’s not really the same, is it?

  45. “It’s just a container and is replaced as easily as slipping on a new shirt.”

    Who the hell are you kidding, Jo? We’re all stuck to the wrapping, kiddo; life would be so much more easier if we all get new containers when we hit 80, but we have to take what we get as is; there’s no getting rid of the shirt. 😉

  46. Josia, I don’t think our bodies are insignificant at all. What would life be without our bodies? And I’m not just talking about sex and the good stuff? Think how difficult it would be to read the latest kabbalah book without my eyes to see and my hands to turn the pages? And while we are here on Earth, it’s all we got — so I believe medical research into ending disease and illness is much closer to God’s work than worrying about the future scheme of things.

  47. Thanks for sharing this, Neil and Sophia. You are amazing, Sophia. Wow.

    OMG, Boob cake. How many men would…? Okay, don’t answer that.

  48. This is a beautiful post. I really wish Sophia and you could work things out for the best.

    This is a touching post and its ruinning my mascara! All the best to Sophia. She’s a wonderful person!!

  49. Congratulations Sophia on being a one-year breast cancer survivor.

    and thanks for keeping Neil in check.

    Ted.

  50. Sophia, I’m so glad you’re through that storm. This blog woudn’t be the same without you.

  51. Sophia, congratulations on your one-year anniversary. I can’t imagine how much strength it must take to get through this, but I can say that I’m impressed with your resilience. And Neil, no matter how much of a ‘stone’ you felt/feel like, I would imagine that Sophia was and is grateful for your love & support. Not to mention a buttload of belly laughs.

  52. Wow, I didn’t know. That’s great that you are so supportive!

  53. Congratulations Sophia! I can’t even imagine how tough this past year has been for you both. I admire the love you two have for each other, regardless of where your relationship may be right now. Cheers!

  54. Wow, Neil and Sophia. I’m really amazed by you both – Sophia’s strength, and Neil’s unwavering respect.

    I have two friends who have cancer (theirs, however, not of the breast variety), one of which is in a particularly bad place right now. I needed to read this. Thank you for your inspiration.

  55. Sorry that I’m late to the game on such an important issue. Fantastic story and although you and Sophia are obviously having a rough time making it work together, I lurve (ha,ha) that you work together.

    And, about being a “rock”… I think that there is something to that. Perhaps if you would have been too calm, she would have had more time to freak out. If you’re freaking out, she can be distracted by trying to calm you down–a feat much simpler than tackling breast cancer…at least I would imagine…

  56. What a beautiful post and how fitting for this particular month! Thank you for sharing with your readers.

  57. Neil and Sophia, thank you for such honesty about each of your struggles…you will touch and help a lot of people.

  58. Sophia–refuah shlema. G-d should bless you with a long & healthy life.
    Neil, people need rocks, but sometimes big stones are equally good because…at least they’re there and noticeable!
    I hope this year is a better year for each of you.

  59. I am very happy that Sophia is doing so well. Hats off to her and to you as well Neil

  60. Many congrats to Sophia! Getting through that first-year-after-the-bad-news is a big deal!

    My contribution to your list of unfortunate responses isn’t a funny/appalling line someone said, but a way certain kinds of people react. I was operated on for cancer about four and a half years ago. Some friends came through magnficently, including some I hadn’t known were such good friends. Some friends I’d thought I was close to just evaporated. (Understandable, cancer’s scray, all is forgiven.) There’s one kind of person I bumped into, though … They really didn’t like it that I had cancer. I finally figured out why. It’s because I got the cancer for no good reason. I always lived healthily. Exercised, didn’t smoke, didn’t get fat, watched the diet, etc. I’d done nothing wrong, so to speak, yet I got cancer anyway. And a certain number of people just seem to get freaked out by that. I guess they need to believe that if they eat well, take walks, avoid cigarettes, etc, they’ll live ’till 95 — that they’re guaranteed to live ’till 95. So somoene who does everything right yet still gets cancer really rocks the conceptual basis of their world. Funny.

    All the best to both of you, and much sympathy (and admiration) on surviving such a tough year. And may it be the last tough year for a long, long time.

  61. Even though I never met any of you, I feel as if I know
    so many of you through reading your comments on Neil’s blog (and taking peeks at your own blogs.) What a great community of people!
    I’m really overwhelmed and very touched by all your good wishes and warmth. Thank you.

  62. Neil….wow….great post…I had no idea that your wife was a breast cancer survivor. Or if I did, it somehow slipped my mind over the course of the past couple of weeks. Is that how you ended up finding my blog?

    Lauren

  63. […] Neil Kramer is a writer and web producer and he is Sophia’s caregiver; on his post “Citizen of the Month Wants a Cure” he writes about a lot of things of Sofia’s experience with breast cancer […]

  64. My wife died from a rare cancer that was incurable at the time and probably still is. (Leiomyosarcoma) Whenever the worry, pain, treatments did not stop her, she would be just as vivacious as the day I met her and the following years. Amazingly, she was even beautiful after having delayed cutting off her the long hair that was her pride and joy. After she died I found a paycheck receipt. With all the torture she was undergoing form multiple operations, chemo, radiation and experimental drugs; she managed to work for a few days more only two weeks prior to her last day on earth. Incurable? She never gave up and I guess I didn’t either as I realized later that I told her she did not have to keep her Federal employee life insurance in place for me. Were we both in denial?

    These women are something! They seem to be attacked by cancer at the very heart of their femininity. She on her uterus, others on the breasts; what is it with this, GOD! Now I have it from the prostate and threatening to go out into the rest of the body just like all the rest of this stuff. It is like we are rotting away, one cell at a time after serving to procreate. Not right, not good, and not fair at all.

  65. Outstanding comments from so many people.

    I had a double mastectomy 6 years ago, but 12 and a half years ago I had two stem cell transplants to stop multiple myeloma, an incurable cancer of the bone marrow.

    My book, “Cancer Etiquette: What to Say, What to Do When Someone You Know or Love Has Cancer” is published by Lion Books. The book is my way of making suggestions that may help all of us better deal with the complex issues of trying to communicate about cancer. What we say and what we do counts.

    Rosanne

  66. Ashlee Bettencourt

    May 18, 2007 at 10:31 am

    YOU ROCK SOPHIA!! Seriously girlie… CONGRADULATIONS!

    Oh and I agree with the second commenter! Kicking in the shins repeatedly would suvice (if that’s the spelling!) 🙂

    PEACE!

  67. Found your site through random breast cancer searches in google, etc… and wanted to say that this was a great entry. I hope things are still going great! My wife is, in October, going to be a 1yr survivor. She will have a mastc and reconstruction soon, too. God bless every single woman, especially the ones stronger than us men, to go through something like this!!

  68. Congratulations Sophia and you are very blessed for having a very good friend and hard rock by your side.

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