They Found My Uterus!

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It’s been a sobering week. Did I expect my cancer to return to visible status? Yes.

I thought it would wait through the summer and I never considered it would return in an immediately life threatening way. But it did and I get the situation.

My response was action since I still hold out for obtaining the greedy age of 72. Between my new physical realities, deep sadness and coordinating three major cancer centers in three states, even with great helpers, I was exhausted. Yesterday my only task was to get to OHSU and piss in a cup. And I said “no.”

I opted for a chair in the gorgeous sunshine, perfect breeze and faced my grim reality with my heart not my head. I might just have to say goodbye.

My husband intuited my reality and arrived home early. We sat together and talked end of life issues. It was lovely. It is what is within our control. The mood was deep and yet light and oh-so-tender.

This morning I awoke to an emailed copy of UPenn’s reading of my ct scan of last week. One issue I had had was, “where did my uterus go, when did I have a hysterectomy and why a vaginal cuff?”

Where is Marcy's uterus?

Where is Marcy’s uterus?

But when your belly is full of cancer, you let go of the esoteric questions. The vast majority of women with ovarian cancer have a full hysterectomy as part of their debulking surgery. I did not. For some reason when I transferred to OHSU they decided I had a hysterectomy. It’s led to a little chaos like being denied a pap smear because I don’t have a cervix. I don’t. How do you know that? I think I have a cervix. Who snuck in and grabbed it and why? These are the kind of mess-ups that entertain me too much.

So, I have wondered out loud about these missing body parts. It’s just so perfect: “Grief Stricken Woman Loses Uterus.” A deserving headline for somewhere.Unknown-1

And then this morning at 7 am UPenn informed me that they found my uterus. It is just where it is supposed to be! I have a cervix, no vaginal cuff and, sigh, still a belly full of cancer that they declared having greater spread then OHSU. You win some. You lose some.

I sit with my grief in my heart, it is very real, but I refuse to lose my wit and sense of what I love about being alive.

As I pack a suitcase full of pills for my Monday travels, I sigh at each new bottle that offers to offset some side effect of treatment. I will come back feeling much more poorly. These drugs help and hinder. I pack not quite believing that my short break is over but knowing that if the sun is shinning when I am in NYC that will be enjoyed lavishly by me because that is within my control.images-1

43 responses »

  1. Marcy … you are such an incredible lady and writer even in difficult situations. DANG I’m glad they found your Uterus .. as I’d be crazy if I lost my penis!! I wish you only the very best on your trip – you know we all LOVE you!!

  2. To state the obvious – cancer sucks big time. I get angry every time I read a story like yours and want to scream and yell and hit things. And I know about all those pills; sometimes I want to throw them into the backyard and jump up and down on the bottles until every last pill is pulverized.So that being said; good luck next week. Keeping you in my thoughts and prayers.

  3. Oh, Marcy, I wish you well in NYC. I’m always amazed at how well you face your reality. Enjoy the sun – I hope it shines!

  4. I am just thinking of you and sending my energy to be with you. I was thinking of you just a couple hours ago and sharing some of your great organizing work with someone here in Spokane who has started a group called I Did The Time, a group of folks with criminal records who are working for recognition of their right to change and grow and recover. I hate that this is happening to you.

  5. All I can say is wow…..kinda confused about your debulking…..I hope you are getting as many hugs as you can. I am left stunned. Hope all goes well in NYC.

  6. Even if the sun does not cooperate Marcy, you can still enjoy your own, internal sunshine…you’re right, this IS within your control! Hugs!

  7. Marcy, I love your sense of humor along with your ability to face things head-on and talk about the hard things. Wishing you a great outcome in NYC and some fun while you’re there as well!

  8. Sweet, sweet, Marcy. I am at a loss for words as to how much strength you have and wonder at the courage you have. And yes, I hope the sun shines every second of every day for you.

  9. Awed at your humor and how you generously keep us all in the loop. I know it is much muh harder than your words can communicate.

    Love you.

    Sent from my iPhone

    >

  10. Glad you got the end-of-life discussion out of the way. Now, it’s done. You can concentrate on what’s next, the trip East, and Dr. Bruckner. You deserve all that is good.

    • Well, I lucked out and they did laproscopic. I had minimal cancer in the abdomen, it having all gone to the chest. But asco 2104 announced new study results showing that we die faster. Get the full abdominal open!

      warmly, marcy http://livinglydying.com/

      On Jun 20, 2014, at 3:49 PM, livingly dying wrote:

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  11. Well dear, I know this is so very serious…..but you continue to crack me up….your writing always paints a picture that is full of life even as you face death. how do you do that? safe travels my dear……i will be thinking of you. love & hugs, doodle

  12. MARCY!

    I love you. You and Mike are like peas in pod who love each other as high as the sky, forever and always.

    I have not sent a card because???? What can I say in expressing s my thoughts?~@#@*& What I want to use is the big

    “F WORD”…why, why, why?!

    Thinking of you…more than you will ever know.

    Love & kisses

    Louise Rickard –

  13. Thankful that your uterus has not been permanently misplaced! Hate it when that happens! May you and your remaining body parts have a healing trip to NYC and may they work miracles on your resilient body so that your spirit may shine on with your loving family and friends. Blessings on you, dear one.

  14. You write: “I might just have to say goodbye.” And I hope it is well closer to 72 than say, Christmas this year or next…because if you have to say it, we will have to say it back. Sucks all the way around. So…take prayers, good wishes, healthy energy from all of us with you as you go to NYC…

    And know that when you come home, with whatever news and future there will be, when it is time – we will do our very best to say goodbye in ways to honor you – with profound loss, and renewed commitment to political truths and possibilities and processes, and with your insight and humor present among us. After all, how many people do you know who celebrate taking their utuerus with them, when it has been missing for a couple, three years?

    With love and hope and prayers –
    Joni

  15. Your strength, wit, and deep commitment are all inspirational. A quote from my book Outshine: An Ovarian Cancer Memoir is “the beauty of the real me, and the real you, outshines the effects of cancer, chemotherapy, and radiation.” You are a shining example. My prayers are with you.

  16. Thank you for your honesty and strength as you face this next chapter of your life. Your humor helps those of us following you remember what is important – enjoying each day for the gift it is.

  17. Marcy, my dear, I love, love, love to read your livingly dying thoughts and funnies and sads, even when it is horrible news. Your comment about sunshine for your New York trip brought to mind the end of Walden: “Only that day dawns to which we are awake. There is more day to dawn. The sun is but a morning star.”
    Thanks for teaching us all to be awake to the dawning of each day. There are so many stars/suns, that at any time of day, in any locale, one of them is dawning somewhere. I will always be sure that one of them is you. Love you.

  18. Oh, Marcy. I am so sad. I continue hoping for the miracle that will allow you to reach your goal of 72. We truly need you on the planet as long as possible. Why can’t some of those who are causing us grief as a nation take your place? There are so many to choose from. I love you, Marcy, admire you, value you tremendously, and hold you in my heart. xo

  19. Dear Marcy I took my OVCA (and uterus) to MSKCC in New York a very long time ago – there I found hope (a game plan) and saw a lot of great art… Both helped healing my body and soul. I wish you the same good fortune.

    • Thanks for sharing. I did not know your case had been daunting. I assumed, silly me, that you were just one of the lucky ones that gets front-line and goes back to life. How many years have you been on this journey now? A long time…..you inspire us ones still in active struggle and moving in the wrong direction. xo (I wanna grow up and be like you!)

      Marcy Westerling http://livinglydying.com/

    • Marcy,

      Have you thought about an opinion from MSKCC? I know that they are also doing alot of work with OVCA and immunotherapy……different centers have different approaches within the immunotherapy landscape.

  20. Marcy,

    Good for you opting to sit in the sun instead of going to OHSU fo provide a urine sample…..you can provide that to your doc in NYC! I’m glad that you and Mike were able to have some quiet time together taking in the warmth of the sun and each others love. End of life discussions are always important….no matter where we are on this journey.

    I honestly had to re-read your post a couple times as I couldn’t believe what I was reading regarding your uterus and your surgery……I’m still sitting here in disbelief…..how could this happen????

    Your spirit is amazing! I wish you much joy in your time with your family and friends in NYC…..and plenty of sunshine!

    • Which part is most confusing? That I wasn’t traditional debulked or that OHSU decided I had had a complete debulking w.hysterectomy. The former made sense given I got lighter surgery, most of my cancer was in the chest and the very qualified surgeon labeled me optimally debulked. But I don’t think the data supports continuing that shortcut when possible – first data crunched says we die faster. The latter, deciding my medical history, well that is wrong!

      warmly, marcy http://livinglydying.com/

      On Jun 21, 2014, at 2:05 PM, livingly dying wrote:

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      • Both are very confusing to me! I don’t know what your staging was when you had your initial surgery or what year you had your surgery……but it sure is totally different than my surgery (total open abdominal hysterectomy ….in 2010…. although I was endometrial…..stage III). Plus how could OHSU not see that your uterus was still intact on your CT scans once you transferred to them? Also, did Penn not do CT scans during your involvement in the immunotherapy program?

      • I was diagnosed as stage IV. Yes, UPenn has done many scans and never been confused. I transferred to OHSU from kaiser when I was medicare eligible Nov 2012. They are the only folks who have consistently decided I had a hysterectomy during initial debulking. I did not.

        I am an odd case. And that must have confused them. But really, I can’t explain OHSU being so wrong.

        warmly, marcy http://livinglydying.com/

        On Jun 21, 2014, at 6:09 PM, livingly dying wrote:

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      • Sounds like the best thing to do might be to talk with each of your doctors at each of these institutions that you received care. Perhaps each of them could provide you with an explanation.

        Best to you!

  21. A dear friend of our family used to tell us, for the last ten years of her long life, “In case I forget to tell you, I have had a great time.” I say that to you now, Marcy, never knowing when our last chance may be. In case I forget to tell you, I have had a great time knowing you and seeing the ripples you created reverberating happily all around me.

  22. From: Louise Rickard [mailto:louise_w_rickard@yahoo.com] Sent: Friday, June 20, 2014 5:16 PM To: ‘livingly dying’ Subject: RE: [New post] They Found My Uterus!

    MARCY!

    I love you. You and Mike are like peas in pod who love each other as high as the sky, forever and always.

    I have not sent a card because???? What can I say in expressing s my thoughts?~@#@*& What I want to use is the big

    “F WORD”…why, why, why?!

    Thinking of you…more than you will ever know.

    Love & kisses

    Louise Rickard –

  23. You do what you can do, You pack what you can, and what you don’t need to take with you, you leave behind. You grab his hand, hold on tight, and step forward, looking ahead and not behind. I love you, my dear friend.
    xxx Kathy

  24. Sigh…
    Dear Marcy,
    I don’t want to be mellow and accepting that you might have to say goodbye. I want to stomp around and be very grumpy. In fact I did a bit of stomping – on your behalf or selfishly I’m not sure. I’m so sorry you might not get to be 72. From other friends living with cancer to children and families struggling with mental health and substance abuse issues, there are winnings and losings around me at every turn, but I’m still betting on you! Not so much that this damn cancer might not get you (and I do hate that prognosis) but that your life will be yours no matter what and that in this moment, for now, you are so completely here and alive. To me that is the definition of winning.

    I’m also glad you found your uterus, every part counts.

    Sending you love and good cheer,
    Elaine

  25. Marcy dear, If I thought it would help, I’d be pissed at myself for dawdling on making fun plans with you and Mike. I’m not giving up on that, tho. When you let us know you’re ready, I’ll be right on it. In the meantime, I have about 12k Jet Blue points – they’re yours if and when you need them. JB has flights from pdx to jfk.

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