Thursday, December 19, 2013

Sandy Kugelman - RIP

Our last private communication  was my son's birthday, October 27th. It was the last of about 800 messages sent back and forth since July of 2012. Responding to my gentle inquiry, Sandy said that "things are strangely better now" but that she didn't want to share that news publicly, because then people would want to come over and visit, and finished the message with her famous "BWAHAHAHAHA!"   Sandy was always able to find humor even in the most dire situations. She could tell me how absolutely wretched a physical experience had been, and in the next sentence, make me laugh.    By the end of October, she said that her family was coming to take care of her. She hated to admit it but she was no longer able manage, or at least to care for the dogs and her beloved chickens as well as herself. Her son, (the same age as mine), should not have to do it all, she reasoned.  Of course, we all know he was the forefront of her mind in deciding to accept help. She loved the chickens, but it was not about the chickens.  Her kids, "her sweet babies" were what she was about.   She was upbeat but I feared that there was probably not much time.   Hope is powerful though, I told myself that she'd had scare after scare and recovered, and I allowed myself to believe that she would end up okay again.

But not this time.

Sandy was my guide and my mentor but not only mine - hundreds of people relied on her.  She had metastatic cancer to the liver, later lungs and finally brain, dealing with this disease for 9 years, a remarkable feat. (Our prognosis is 2-3 years).  She reached out to me for a reason I no longer recall, and we instantly began a friendship that became my safety zone.  I could say anything to her, anything at all, and she understood. And, she could say anything to me, and did. She called me "Sisterann."  Over the course of those 800 messages, we shared all of our darkest thoughts on this disease, what it does to us, our families, our loved ones.  We discussed the cancer wannabes (yes, they are out there) and how to manage those well-meaning friends who bombard us with their cancer curing diets and tips.  We shared our thoughts on Pink Culture, and how it creates those wannabes.  We discussed hospice and various treatments and chemos and bodily functions and vomiting and weight loss, we discussed our families, we shared pep talks and downer talks.

She chastised me publicly once when I said I was skinny.  No!  I'm heroin chic!  Like her!    We had each other's backs and if we saw something online we didn't agree with, we'd poke the other and both go post our agreement and support each other and our shared opinion.  I am an almost-Jew, a wannabe Jew, a descendant of Jewish people - a long line of Rabbis interrupted by the anomaly of my secular dad falling in love with a Catholic girl. (I suppose I could think the opposite too - I come from a line of Irish Catholics interrupted by my mother's marriage to a Jewish fella - but I don't.  To me, the Irish is the anomaly, the Jewish part is my heritage.)   Sandy totally welcomed me into the tribe, sharing her holiday traditions with me, explaining them, pretending like I belonged, even knowing that I am a non-believer and know very little about her religion.  She would throw in a "you know, the way we Jews like it" into the middle of a conversation, like I belonged.  Considering that her religion was very important to her, her inclusion meant a lot to me.

Often,  in our notes, we complained about our disease, in gory detail.  We bitched about how we felt, our symptoms, our pain. We could tell each other exactly how bad it was, without having to worry we would scare somebody, or be told to stay positive, or face somebody's fear and denial.  Cancer is a roller coaster, so of course, sometimes we felt good and we would share that, with joy and hope. But oddly enough, we never felt the same way at the same time.  - I would be up, she would be down, and vice versa.   Once she told me, "I sure do miss the days when I was the one doing well and YOU were doing shitty.  BWAHAHAHAHA!!!"    So Sandy.

When she got brain mets, our private communications slowed to a near stop.  I checked in now and then, but writing was hard or her and reading even harder; she complained about her vision and her difficulty understanding words, which frustrated her to no end.  In keeping with our relationship,  I didn't want to put pressure on her so I let her go.   I posted on her wall now and then to let her know I was thinking about her - sent her a hand-made card, but let her be sick without needing her.  Truth is, I did need her and always will.   I was there if she felt like she could chat.  I know she knew that.  But she knew when it was time for friends and family.  She knew when it was time to delete our messages, which she said she had done.  I can't, not yet.

"You are my encouraging friend who GETS IT and may you and I always be a team, helping each other out when times get rough.  I love you dearly, soul sister."

I know that people say you can't have a full-fledged relationship with somebody you have never met.  To some extent, I agree with this.  People are so much more than what they can write.  You miss expression, nuance, that fleeting frown or slight smile that helps this human species communicate.  Yet, when somebody can write, and does,  they are so much of what they say, and the thoughts are deeper than what can be shared in conversation - all the distractions are gone and the communication is  pure.  When they feel like they can lay it all out without repercussion, you do get a true picture, and you do develop a real relationship. Had we more time, had we been healthy, I'm sure we'd have one day managed to meet.  But our relationship was about cancer. It branched out into talk of life and family and our worlds, but it started because of cancer, and it ended because of cancer.

Cancer took her on December 6th.

The outpouring of love online since her death has truly been amazing.  I've been in this Cancer Community for four years and I've seen nothing like it. I believe that is because Sandy had a way of making each person feel important, that each soul mattered to her, whether you ever met her or not.

So I mourn this woman who died of the disease I will die from.  I have lost the one person who understood, who shared my hopes, my fears, who also lived this unique experience and therefore was completely nonjudgmental.  I miss her, although I'd never seen her eyes or heard her voice.

As Sandy once said to me, "I love your soul and we've never even met."    You too, my friend.  Rest in Peace.

Don't forget to vote for me in Healthline's Best Blogs contest.  And, one of the three winners needs to contact me about your MedSystem, so if you won and have done done so, please do it quickly or I'll have to give it to the next in line! 


  1. Thank you for this beautiful eulogy. I'm glad you had Sandy as a friend and fellow traveler. (Are you sure it is a good idea to delete your messages? Maybe they should be preserved, like a written form of StoryCorps.)

    1. Yes, as Anon. says, a beautiful tribute. And I too wonder whether you should keep the e-mails? You may want to draw from them for your book...and yes I'm holding my breath until you write it!

  2. You nailed it! Someone wrote that Sandy was "living sunlight" and she truly was. She is sorely missed.
    her/your IV League sister,

  3. Just after finishing the whole bc thing, I had a metatastic friend who was dying. I couldn't bring myself to go visit her in hospice. I will always be ashamed of my cowardice, but it is the truth. The loss of your friend has to be excruciatingly difficult, and I am sorry.

    1. Debby, don't feel ashamed. If it makes you feel any better, I think it is a lot easier for people in hospice to NOT have visitors during that time. There is nothing worse than feeling like we have to rally for others when we can't, or have our friends see us so weak and debilitated, and if she was already unconscious, than there was nothing you could have done anyway.

      When you know death is coming, as many of us with metastatic cancer do for a few years, than the time to say good-bye is not at the end, but in the middle. If you ignore us for all those declining years and then show up at the end, it is meaningless and more about you than us. If you have been kind throughout the years and are not there at the very end, that ending isn't what matters it is all the years you were there.

      It is the sum total of our relationships we look back on, not just a last minute good-bye.

      At least, that is my thought. I'm sure your friend knew you loved her and understood.

  4. Crap. I'm sorry to hear about your friend. The people we never meet become our friends. I'm sorry.

  5. Not exactly. More like they have a very slight suspicion, with no real data, that eating tomatoes might reduce your risk of getting it. It does not "help in fights" with bc. If any common fruit was able to significantly stop or cure cancer it would be front page news, not a side not somewhere.

    1. Calpurnia, I deleted the post you were responding to. It was a link to a site that isn't reputable, on a subject that hasn't been proven, underneath a topic that had nothing to do with it. Some people run around to popular blogs and post their links so that they can up their google ranking. I'm happy to help people who have legitimate sites but there is a right way and a wrong way to do it.

      Comments should have to do with what I posted, at the very minimum, not trying to send people to their own page. And, if you know anything about me, posting about an unproven diet supplement as a cancer preventative isn't going to fly on my blog.

      Anybody who wants me to link to something needs to contact me first.

  6. So sorry about the loss of your friend. Your words paint such a beautiful picture of her. May God keep her soul in peace. (I know you don't believe, but you did say she did.)

    Too many of us are still dying of this awful disease. Too many mothers, sisters, daughters, grandmothers, wives are cut off from their loved ones far too soon.

    Elizabeth J.


Thank you for commenting. If the post is over 14 days old, the comment will be moderated and will approved later. This is a spam prevention technique - but I love to hear from you!