Citizen of the Month

the writing and photography of Neil Kramer

One Month of Waiting

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During the last month, I haven’t been very good at commenting on blogs, answering emails, or returning calls.  After I wrote a post about accompanying Sophia to her mammogram, nothing was found on the mammogram or the ultra-sound.  We were ecstatic.  However, she also had an MRI done.  Sophia’s surgeon called with some bad news: they saw “something” in her right breast on the MRI.   This was especially scary because a year and a half ago, the same doctor removed a cancer tumor from her left breast.   This could signify something more serious.   Sophia and I both freaked out.

The surgeon, a well-known doctor at Cedars-Sinai, said that because this “something” could only be seen on the MRI, a regular biopsy could not be performed, and that the only way to go was to do a full invasive surgical biopsy, general anaesthesia and all.

Now, this doctor already knew that Sophia wasn’t just going to follow orders.  If there ever existed an organization called Proactive Patients of America, Sophia would be the poster child.   A year and a half ago, Sophia convinced her doctor to do a new radiation procedure, Mammosite, an intense twice-daily five day therapy available for those with early-stage breast cancer.  The treatment is used instead of the typical seven weeks of whole breast external beam radiation therapy   This required Sophia to have an additional small surgery, and to walk around with a “balloon” inserted in her breast for ten days.  The procedure works by delivering radiation from inside the breast directly to the tissue where cancer is most likely to recur.  It was painful and uncomfortable, but it seemed to have worked, and this technique is supposed to be much more concentrated than regular radiation, and therefore protect the heart and lungs from extensive radiation damage.

Sophia bravely made it through the treatment.

This time, after this latest discovery, Sophia went back into action, doing her own research.  She was wary of getting invasive surgery on her other breast.  Her healing after the original surgery has been difficult.  She went home and Googled every cancer site in the world.  She learned about another relatively new treatment,  a non-invasive biopsy called the MRI-Guided Vacuum Assisted Breast Biopsy that could be used in certain circumstances.  Rather than surgery, the patient is put into a MRI machine, and then, with an assistance of a new apparatus, a special needle is used which “vacuums” the samples out.

Sophia asked her surgeon about the procedure.  He said it was a theoretical possibility, but there was one big problem.  Cedars-Sinai did not have the equipment. 

Here is where most of us would give up.  I told Sophia to forget it.  Did she listen to me?  Of course not.  She went ahead and convinced the hospital to RENT the equipment for her.   This way they could learn the new technique better and eventually buy the system for the hospital to use.

While this was a giant step forward, there was still a lot of fear in the air:

1)  Sophia was giving herself up as a guinea pig.
2)  What happens if they do find cancer?

For two weeks, we waited for the big day.   Tensions grew between us.   It was hard to concentrate on anything other than the wait.   At night, rather than talk about any issues, we spent our time watching TV shows about Texas Hold-em. 

A few days before the hospital appointment, Sophia got a small cut on her finger and it got infected.  It seemed like a big nothing, but when the doctor heard about it, he said they must postpone the appointment because the procedure could cause a severe infection.  We wouldn’t be able to do the biopsy for another ten days.  Sophia was put on two super-strong antibiotics they give people with a most serious Staph infection.

Ten more days!!  Let’s just say that during those ten days, Sophia and I became professional Texas Hold-em players by watching TV every night.  We would talk about players like Daniel Negreanu and Doyle Brunson over dinner, like they were family.

Eventually, the day came.  I was not in the hospital room during the procedure.  I was in the waiting room leafing through a Golf Magazine.  Why does the hospital put these magazines out?  Are they for the patients or the doctors?  

As I sat there, Sophia was slipped in and out of the MRI machine at least 10 times, while they were mapping, positioning, re-positioning, checking, putting the needle in, etc. .  I’ve never been in an MRI machine, but I hear it is pretty unpleasant; you wear earplugs because it’s as loud as sitting in the engine of a fighter jet, your hands are tied, you have to keep perfectly still, and you feel like you’re trapped inside a barrel.

Despite it all, it was still better than invasive surgery.  The procedure took about an hour and a half, plus time in recovery.  We went home and waited again, this time for the results.

More watching poker shows for a few days.

Today, there was good news:  it was benign.   No cancer.

Sophia and I can stop watching poker and go back to fighting with each other again.  Back to normal.

I know a lot of you go on those Revlon breast cancer walks or contribute to the cause.  Thank you.

Throughout this whole ordeal, I’ve been amazed at how Sophia has handled it all — from the way she took medical matters into her own hands, to her willingness to be a guinea pig, to the way she kept her sense of humor.  

Of course, things aren’t really “over” yet.  That is one terrible thing about cancer.  You can never fully say it is over.  There is a five year “period” where you have to keep a watchful eye for any recurrance. 

Yes, Sophia and I are still separated and all that.  Nothing has changed.  But during the past month, I certainly was reminded about why I married Sophia in the first place — her beauty, brains, and grit.

If you haven’t heard my song to Sophia yet — which I put out there on the eve of her procedure — you can find it here.   Feel free to send her a message — or write a better song!

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75 Comments

  1. W O W ! ! !

    I love Sophia! Bravo to her 10 times over for being the captain of her own health. I do believe that in this day and age we must be our own guardians.

    And she convinced the hospital to RENT the equipment?! again, W O W ! ! What an amazing woman!

    Congrats on the good news. And can I say that I will be SO DEAD if you guys come down here and play texas hold em with us! LOL! 🙂

  2. I wish that everybody had the tenacity that Sophia has in tracking down information and other options regarding their health… so many people just give in to whatever the doctor says (because they’re “the doctor” after all) and that’s the end of it. Obviously this is not always the best course of action.

  3. Glad to hear the word benign. Good for her for taking control of the process of informing herself and the staff of what she can do.

  4. good for her for doing her own research, she certainly sounds like she’s not about to sit around and make do, and she shouldn’t. sadly, most of us accept whatever we’re told by doctors, we don’t ask questions, we don’t investigate, we assume what we’re being told is final. i had no idea the song, her tribute, was the day before the procedure, that makes it even more special. keep the faith, i tell myself those very words everyday, it sounds like those are words she is living by as well.

  5. I am moved to tears. Sophia, you are brave…and I’m so happy for your results. I feel as though I should be thanking you. You not only helped yourself, but other women who may need to use this procedure in the future.
    Neil, it is almost just as hard to watch someone you love go through this, as it is for the person going through it. I admire you for standing by Sophia.

  6. Sophia, you’re amazing. Congratulations on the benign diagnosis.

  7. Very brave woman you’ve got there.

    Very great friend she has in you.

  8. phew! i was clenching my jaw until i read “it was benign”- thank goodness!

    i am so relieved, for both of you.

  9. I’m thrilled about the great news. The human body is an amazing gift, but not nearly as amazing as the human spirit. Brava Sophia.
    😉

  10. Glad to hear it was benign. Is Sophia available to come up here to grill the doctors on my aunt’s cancer treatment?

  11. From everything I know of Sophia through you, I already considered her to be rather remarkable. This cements that for me though! Cancer has taken more of my family members that I care to consider, because of that I am poked and prodded and tested yearly “just to be safe” and I put it off over and over again… I read this post, picked up the phone, and made my doctor’s appointment. Sophia is an inspiration, and you are as well for standing by to support her as best you can

  12. Wow- I couldn’t read through it fast enough to get to the biopsy result that I figured you were saving for the end. Congrats on getting through it all with a positive result- having lived through something similar with a loved one, I know how harrowing it all can be.

    Maybe Sophia can put some of her research and people skills to work in other contexts. I hear we’ve got a little bit of a row going on with Iran right now over them wanting to build nukes. 🙂

  13. One day I gotta meet this woman. And you too, Neil. Congratulations, Sophia — you da woman!

  14. Hurrah for Sophia (and boo for the doctor – isn’t it HIS job to be up to date with latest diagnostic equipment and treatment procedures? I say – he should’ve shared his income with her, honestly)

    I hate to rain on this parade of celebration, Neil, but aren’t you glad Sophia isn’t the one to sit apathetically and go with what she’s told – unlike those people you seems to think a genetically predisposed to be on government assistance (judging by your comparing them to the obese in your reply to Jules @ the previous post). Isn’t her example: living, breathing, and beautiful thanks to her own efforts and perseverance convincing enough for you?

    In answer to your mockery “if these folks only stopped complaining and learned to pick themselves up from their bootstraps, went back to school, and got a well-paying job, they could get off of ‘government help’ and find success” you can only look at Sophia and millions others who did pick themselves up from the swamps.

  15. I’m so glad that it was benign! Sophia set a wonderful example we all could learn from. You have to be your own health advocate. Knowledge is power. Well done Sophia! Neil I am sure you were a wonderful support to her through this as well.
    I am happy for the both of you!

    3T

  16. Excuse my language: that woman has got BALLS. She is someone to be proud of, and admire, for her tenacity and her taking matters into her own hands.
    You are a hell of a guy for being there for her when she needs you most, whether you’re separated or not.
    I only wish the both of you continued happiness and good things!

  17. Neil I was very happy to see the word benign in there. My wife is this temperament as well but I don’t know that she could get a hospital to RENT a machine like that. It sounds like she is quite the salesperson as well.
    I also hope that the two of you are happy and together.

  18. That is an amazing experience you’ve shared on so many levels…thank you. It is SO important for us to be our own advocates with doctors…my best friend has proven this over and over again to me. Cheers to Sophia for being so strong and huge congrats at BENIGN. My mother is a breast cancer survivor…the cause is close to my heart.

  19. Sarah — thanks!  My mother is, too.

    Tatyana — I wouldn’t boo her doctor, who is an amazing surgeon AND agreed to help her talk to the hospital about renting the equipment. The hospital is still waiting for a donation to buy the machine.

    As for your political comment, I don’t want to get too much into it here — since this is a celebratory moment — but it’s pretty clear Sophia is a special person in these circumstances. Most of us do not have the chutpah to do this. On the other hand, she was also helping the hospital evaluate and learn the equipment, by agreeing (and having the courage) to take the risk to be a guinea pig.  Hopefully, I can learn from Sophia, but I have a feeling that if I need to ever go into the hospital, I’ll surely be calling on her for her “assistance.”

  20. wow. this is a tough thing to go through, but it seems some people go through these times because they are the ones who handle it the best. i admire her strength and that you were there for her.

  21. Neil…what a relief…Sophia – you are my idol…great that you chose not to be defeated! (“Fat” posts seem pretty lame now…)

  22. That’s great news! Celebrate the occasion :).

  23. Thank goodness. Thoughts and prayers for you both.

  24. Yay!!!! I am so happy for you and Sophia – I was on pins and needles reading that post….

  25. Celebrate. She has earned it. I know the stress of not knowing is more than a person should have to bear. Seriously, celebrate, this is huge.

  26. Oh, thank goodness. Thank goodness she’s OK. Thank you for sharing this story with us and letting us see how courageous and strong Sophia is (and how supportive you are.)

  27. I think we’re all in love with Sophia now. Her light shines so bright.

    My mother had a double mastectomy done almost 20 years ago (wow, it’s been 20 years). She only had cancer in one breast but she had a 50/50 chance of developing it in the second. Her doctors discouraged her from doing something so rash but after watching her own mother die of ovarian cancer, she wasn’t going to take any chances. When they biopsied the other breast, they found cancer cells in it as well. I salute women like Sophia and my mother who won’t take no for an answer. There’s something to be said for a little hands on the hip-ing and foot putting down-ing.

    A great big collective “PHEW” to you both.

  28. My best to you, Sophia.

  29. I was so glad to see that pretty pretty word “benign” at the end of this post. And very glad that Sophia (which I keep wanting to spell Sofia because that’s the Swedish way) has not been having to go through this alone.

  30. Excellent news! Yay!

  31. My very very best to Sophia! She’s courageous!

    Fitèna

  32. Sohpia – You are such an inspiration to anyone who has ever heard the “C” word. Thank you for being that brave and innovative to take your care of your medical wellness.

    I am so glad that you heard the sigh of relief in the “B” word benign.

  33. What a gutsy dame. I’m so glad things are looking up!

  34. So glad to hear it – Go Sophia! You are an inspiration! And Neil, you are a mensch.

  35. Sophia is one amazing woman, Neil, and you are damn lucky to have her in your life, as she is lucky to have you in hers.
    And I do agree with Wendy that she is an inspiration to us all.
    Needless to say that I am relieved by the outcome of this ordeal.

  36. Remember on your smokers dating service post when I made that joke about cancer? Remember that?

    Sorry.

    Hello, Neil.

  37. So glad Sophia is recovering and that the results were benign. My mother just went through this same ordeal right before Christmas. She totally became Captain “I know everything about Cancer” and it was amazing how much she was able to influence her doctor. In the end she was able to get herself into some experimental program to which was (to the best of my understanding) a more intense Chemo that was finished much earlier than usual.

    There is definitely something to be said for taking control of your own medical proceedings.

    P.S. I’m all in.

  38. So glad it’s benign. I’m sorry you’ve both had to go through this month of waiting.

    Sophia is amazing. Definitely President, by default, of Proactive Patients of America.

  39. Congratulations!!!!

  40. I give huge props to Sophia. Yeah, it can be viewed that she used herself as a guinea pig; but she’s also pretty heroic putting herself out there to make it easier for breast cancer victims down the line. They should be thanking her.

    And I’m really happy for both of you that the results came back the way they did. Time to celebrate. And not with poker.

  41. sophia, you’re my hero

  42. I am so happy for you both.

    Sophia sounds like an amazing woman.

    We should all have the strength and resilience that she exhibits.

  43. Good for her! I’m glad to hear that everything so far is going well, she’s right to question the doctors, everyone should do the same thing. Having delt with rheumatoid arthritis for 5 plus years I am the queen of controversial treatments and straying from “The norm”, which has left me feeling great and in control…there is a lot to say about someone who takes their health and wellness into their own hands.

    I’m proud of her!

  44. Wow. You guys BOTH rock. So glad to hear it was good news.

  45. Wow! What an amazing person Sophia is!! Good for her for being her best advocate! I was so glad when I got to that magic word Benign. Please let her know all of us are keeping her in our thoughts!! and good job you!

  46. Glad she’s okay. Cancer fucking blows.

  47. Aw, glad to hear it was good news.

  48. I don’t know what I’m more thrilled about: Sophia being cancer-free or Sophia being Sophia.

    Congratulations on both counts. (And Neil, stop fighting with Sophia. I don’t like it when you two fight!)

  49. Congratulations to Sophia and you. I’m glad you two continue to stick together. I work in health care consulting and the biggest problem we see is consumers not wanting to take responsibilit for their own heath and their own care. Sophia really is the poster child and I applaud her.

  50. Kick ass Sophia! Here’s to your continued good health and happiness.

  51. I’m so glad she’s ok Neil! I’ll definitely keep you both in my thoughts. Take care of that woman of yours, she sounds absolutely amazing.

  52. Convincing the hospital to rent the equipment…that is amazing, and takes serious chutzpah. I’m so impressed!

  53. You two may be technically separated, but there are a lot of married couples out there who aren’t nearly so together on the important stuff.

    Thanks for standing by her, Neil.

    And Sophia, you’re amazing!

  54. I’m so glad the news was good. Will be thinking of both of you. It’s good to hear of someone with courage like Sophia (and you, Neil).

  55. Wow Neil, Sophia is an amazing woman. Great catch. 🙂

  56. Glad to hear the positive results! Waiting wears on a person, lets those little things start nibbling on yea. Yeah for good news!

  57. I worry that if I were faced with an illness like that I’d cling to the paradigm that the Important Doctors know all. Sophia is amazing and the kind of person we should all have in our corner when facing adversity. Having spent a little time with her, I can only say that Sophia’s actual persona exceeds even her stellar online reputation. But I’ve been a major Sophia fan since the first time I read this blog (and wondered if she were real). So happy to hear this news!!

  58. You’ve already gotten a slew of comments, but I have to say that’s awesome. Sophia is amazing. My mother has/had breast cancer and had to go through the chemo and radiation, so I feel for Sophia. You have an amazing woman, Neil.

  59. Congratulations on the good news. Nothing like a little shot of perspective to make you really appreciate life, even if it’s just for a few days.

  60. Wow. You guys have been through a lot. I’m so happy to hear that it was benign. I love her tenacity, she definitely has the will to live: Her Way! It’s great!

  61. […]  Pushy patient: Neil Kramer’s wife ( I think) Sophia cajoled Cedars-Sinai into renting the special equipment necessary to do an MRI-Guided Vacuum Assisted Breast Biopsy on her after something turned up. He blogs it all—including the good news.  […]

  62. Pure and simple:I am happy for you both.

  63. Fantastic. I’m so pleased to hear it. My thoughts have been with her. And you, of course.

  64. i am so proud of (and awed by) sophia. it’s hard to remember that doctors, with all their officiallness and knowledge and authority, don’t- and maybe shouldn’t- always have the final word on how we handle our personal health. inspiring, as cheesy as that sounds.

  65. So glad to hear it was good news! If only I could face a similar situation with such grace.

  66. thanks be to God she is well.
    she’s a brave woman, neil.

  67. Sophia is a remarkable woman and I am beyond delighted that all is well. Benign…wow. I can well imagine the relief. I’m approaching that jolly year 5 (ovarian cancer) since my diagnosis. The fear is always lurking, but there certainly is enormous joy when the coast is declared all clear for the while.

  68. Sophia is my hero!! I’m so glad all is well.

  69. Thanks, everyone, for all your good wishes and kind words.  I’m very touched and tickled pink (pun intended.)

  70. much love to you both!

  71. So relieved to hear the news — a healthy breast is a happy breast! All my best to both of you.

  72. I’m a little late to the party, but let me add my good vibes to this, Neil and Sophia!

  73. I’m very happy to hear the good news!

  74. YAY!!! No cancer! That is fantastic news. My Mom went through treatment for Stage 1 breast cancer last summer and I know it’s hard to watch it all go down. Frustrating. Sophia is amazing though. Girl has some balls. I would never have thought to ask them to rent equipment. That is just incredible. I love it! My Mom just got her first clear mammo in Feb! Very exciting stuff! Congrats to you both, I am so happy for you that it is not back!

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