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Dying Is Not An Option

Today is my tenth wedding anniversary.  I still can’t believe that ten years have gone by.  So many things have happened, mostly all wonderful, since that muggy Saturday afternoon in 2001 when Jennifer Gotshall married Curtis Smith at St. Matthew’s Catholic Church on Indianapolis’ northeast side.  Our colors were emerald and peach.  My Phi Mu little sister was my maid of honor.  Both of my parents walked me down the aisle.  Before the wedding, our amazing musicians rehearsed “Ave Maria” where my bridesmaids and I were being photographed, and it made me cry, forcing the musicians to find another practice spot.  My bridesmaids carried Longaberger baskets containing beautiful floral arrangements my mother had made.  I remember just seconds before showtime, sneaking a glimpse of my handsome husband-to-be through a crack in the door separating us and thinking to myself that I was the luckiest girl in the world.  Father Jack Emrich had us face our guests during the entire ceremony, and he stood with his back to them so that not one moment of our joy would be unshared with our loved ones.  We released our guests aisle by aisle after the ceremony, hugging and kissing our friends and family and thanking them for coming.  A few short months later, our daughter was born prematurely but healthy.  We moved a few years later and bought our own home.  We’ve transitioned jobs and have laughed through tears and have loved one another through each high and each low.  I am blessed to be Curtis Smith’s wife and to have his heart inside mine.  To him I wish a very happy anniversary and I send a tremendous feeling of gratitude.  Thank you…for laughter and love and strength and support.

I also had my surgical follow-up appointment today.  I came in armed with questions, all of which my amazing doctor answered.  She also did an examination to see how my cervix and uterus were healing.  She said everything looked good inside.  Well-healed cervix with no dialation.  Uterus feels good.  Then came the lengthy and scary hyperplasia conversation.  She explained what we knew already – that there are two treatments for atypical complex endometrial hyperplasia – hormone therapy and hysterectomy.  Because I have the “worst” (if you will) type of hyperplasia, a hysterectomy is the best possible treatment option for me. However, my weight makes me a non-ideal candidate.  The risk of bleeding and infection is greater in heavier patients.  So for now, her suggestion is that I take the Megace for three months, come back in early July, and then schedule a repeat D&C to see if the medication did as we’d hoped.  If not, the next step is a hysterectomy, no discussion.  She did also suggest that I consider seeing a gynecologic oncologist, not because I have cancer, but because he or she may think a laparoscopic hysterectomy might be feasible.  An abdominal one won’t work (my weight is the issue there, I guess), and I can’t have a vaginal hysterectomy because I’ve never given birth (my daughter was delivered via c-section).  So she’s going to have Sherry (her nurse) do some research and get back to me with the name of a gynecologic oncologist.  Here are the questions I asked:

Is this my fault?
I explained to her that I’m the sort of person who analyzes problems from the bottom-up.  I need to know why things happen.  I also jokingly threw in that I’m Catholic…I’m all about the blame and guilt.  (She’s Catholic too.  Thank God I didn’t offend her.)  I told her my theory….that obesity is one of the primary causes of polycystic ovary disease (PCO), and PCO is a significant cause of progesterone deficiency and that the lack of progesterone coupled with lots of estrogen is THE cause of hyerplasia.  She said that she has heavy patients who don’t have either PCO or hyperplasia…and thin patients who have one or the other or both.  It’s impossible to say what “caused” me to get sick.  Nothing is gained by ascribing blame anyway, she reminded me.  What is, is.  We’ll never know medically, but until the day I die, I will blame this condition on my weight (and, of course, myself for allowing my body to get so heavy and for neglecting my PCO for so many years).  This is the internal and awful battle I’ll face for a long, long time.  I cheapened myself and I am so disappointed in myself.

What else did the pathology report say?
Basically what we already knew – that I have atypical complex endometrial hyperplasia with squamous metaplasia.  I did have two polyps, but only one was on my cervix.  The other was inside my endometrium.  Both were benign.

Will my daughter get it too?
Not necessarily.  Hyperplasia isn’t genetic.

Did you get all of the endometrial tissue out during my D&C?
She thinks she did.  She removed as much tissue as she could see.

What is the exact, true percentage of cases of atypical complex endometrial hyperplasia becoming cancer?
I told her that I’d read so much online and that all of the doctors and studies said something different.  She said it was 29%.

What has happened to your patients with this disease?
She said that some have taken the hormone therapy and have been fine.  Others didn’t respond to the progesterone therapy and had hysterectomies.

Is it true that hyperplasia spontaneously regresses?
Yes, but in my case, it’s highly unlikely that it will.

What do you think about a low-glycemic diet?
One of my dear friends also has PCO, and her doctor recommended that she eat lower-sugar and good carbohydrate-laden foods.  I asked my doctor and she thinks this is an excellent diet.  She encouraged me, though, to find one that works best for me.

Lots more discussion.  Lots of support.  I asked her if by not having the hysterectomy, I was hurting myself by keeping a pre-cancerous organ inside my body.  She said yes, but also that the risk of surgical complications at this point is not worth it.  The risks are too great.  She also said that if she didn’t think the medication had a fighting chance, she wouldn’t have prescribed it.  We’d have moved forward with the hysterectomy.  I asked what she’d take in a hysterectomy, and she said just my uterus and cervix…the ovaries are still needed because my body needs estrogen, and it’s far too soon for me to be thrust in to menopause.  She was wonderful, just like she’s always been, and told me not to have any more weepy and worried nights (which I’ve had, by the way, every.single.night this week).  I’m to keep taking the Megace, call the gynecologic oncologist, come back in three months, and be strong.  I told her that dying was NOT an option for me, and she promised me that we’d do everything to get me to the point where I can live the rest of my life healthy and happy.

After my appointment, I just cried.  I told my husband that I felt numb.  Hollow.  I likened myself to one of those hollow chocolate Easter bunnies.  You bite in expecting decadent, rich chocolate or salty, creamy caramel only to encounter disappointing and empty air.  Nothing inside.  I drove around for hours after my husband went back to work, trying to put all of this in to perspective and let it all sink in.  That “numb” feeling I keep getting…I think I’m figuring it out.  My body doesn’t always know how to process sad or scary news, and additional time is required to analyze it all and make sense of it.  So to avert a complete meltdown (or, at the very least, an hours-long crying fit or two), I just go numb.  The drive helped, believe it or not.  So did conversations with my husband, mother, Sara, and my boss.  In the end, here’s where I am emotionally (right now, anyway):

1.  I DON’T HAVE CANCER!

2.  There is only a 29% chance that atypical complex endometrial hyperplasia progresses to cancer.  That means that there’s a 71% chance that IT WILL NOT!

3.  I’ve had and survived, quite well let me add, a D&C.  I can have another one.  It’s not pleasant, but I’ll be fine.  I’ve got documented proof.

4.  I am not less of a woman in the absence of a uterus and a cervix.  (You may have to remind me of this one a few times.)  I realize that internal organs are a part of genetically defining me as a female, but there’s much more to being a woman than tissue and cells.

5.  Losing weight is no longer optional.  It’s something I have to do.  If you figure, my next appointment isn’t until July 6th.  Basically, I just bought three months wherein I can lose weight and try to make a personal, non-medical impact on my well-being.  I’m not sure that I can quit carbohydrates cold turkey, but I will say this, I am going to be significantly more careful about what I eat.  I can’t afford to be heavy any longer.

6.  This is my fault.  I am in this situation because I allowed myself to get here.  However, it behooves me not to focus one more moment of my energy on that guilt.  It accomplishes absolutely nothing and will just make this situation worse.  I need to use that guilt and self-disappointment to make me work harder.

I’m not crying anymore.  The numbness is wearing off.  Acceptance is setting in.  I’m not saying I won’t have panic-filled, tearful moments again during these next three months.  But right now, at 3:51 in the afternoon, almost four hours after I got this news, I am OK.  Quietly so.  Even if it isn’t OK, it’s still OK.  It has to be.  Dying is not an option for me.  I choose to live.  And to do whatever I have to do to make that happen.

Comments

  1. Jennifer – just now reading this, and I am happy to hear that you are coming to terms with it. It is very challenging to lose weight, and make lifestyle and diet changes. There are things three weeks ago I couldn’t really imagine living without. However, when you think of what the potential trade off is – cancer, death, pain inflicted on your body, your family, and more, it becomes a much easier task. At the beginning of your post you described your beautiful wedding ceremony. If nothing else, find a goal, such as your own daughter’s wedding, and focus on that – knowing that there is nothing, especially not a silly pesky thing like food that will keep you from enjoying every moment of that day. Keep your head up, and you know that I am here for you, on the good days and the bad. 😀 Love you!
    PS – My diet is low glycemic index – the glycemic index refers to how food measures when compared to plain white sugar. They measure all sorts of foods – fruits, vegetables, pastas, breads, etc and based on how they score – they rank them … Tomatoes are lower, vegetables are lower – in the 40 range. I have been instructed to do a diet that consists of only foods with a glycemic index of 40 or lower. Sugar is 100. A green vegetable is 40. Pasta is nearly 100. Potatoes are like eating pasta – very high glycemic indexes. The primary things that affect your body differently if you have PCOS are: dairy (milk, cheese, etc so you will need a calcium vitamin), bread, wheat, carbs, sugar (including fructose which comes from fruit, which you can enjoy, but not in an abundance), and starchy pasta. If you have to do pasta – at least go with whole grain, whole wheat (there is a difference!) If there is white flour in something – not good. Just read the nutrition facts, and look at the sugars in EVERYTHING you eat – if you can manage the sugars at first – that will help more than anything. I have been on my lifestyle change/diet for nearly 1 month and the first week was a challenge, the second week was easier, and last night, I ate a piece of birthday cake and it was okay. I really didn’t enjoy it that much – though it was delicious. I have trained my body to not crave carbs and sugar, which is the first step. Whatever I can do to help you, I will!

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  1. […] does respond to medication, she didn’t think I’d overcome it with medicine alone (see here for a refresher).  She took responsibility for that today, and apologized.  Medicine isn’t […]

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