Wednesday, January 08, 2014

My bilateral prophylactic oophorectomy (Or… ten years after my mother died of ovarian cancer I take action to not follow in her footsteps)

My mother was diagnosed with ovarian cancer on April 11, 2000.  On April 11, 2004, exactly four years later, she died. I still miss her every day.
In 1993 I had a hysterectomy due to large fibroids. I’d already had four children and my uterus had served me well, so I had no real issue with removing it.  The consent form that I’d been asked to sign included an oophorectomy (removal of ovaries) along with the hysterectomy. Rebel that I am, I crossed out that section and wrote that I was NOT consenting to the removal of my ovaries which, at the age of 36, had plenty of life and love (read: libido) left in them.  The nurse chewed me out and told me that I was not allowed to cross off sections of the consent form.  Seriously!?  It’s my body!
I was given another consent form to complete “correctly.”  On this one I wrote, “wake me up if you want to touch my ovaries.  No consent to oophorectomy given!” Needless to say, I kept my ovaries. And I’m glad I did.
Eleven years later, after Mom died of this deadly cancer that has no real symptoms nor any reliable screening method, I began to ponder the idea of having my ovaries removed.  At first, I just became highly vigilant about yearly CA-125 blood tests (the best screening available, but actually useless as a reliable screening tool) and trans-vaginal ultrasounds.  I felt that this was the best I could do and I wasn’t quite ready to give up my ovaries just yet.  My doctor and I had an on-going conversation, spread over the years, accompanied by blood tests to show where I was in menopause – just beginning, in the throes of it, or all the way through it.
This summer, the blood test showed that I was all the way through menopause and out on the other side. I pictured an old, shriveled lady on a cane when I heard that and I may or may not have had myself a little pity party in the car while I sat in the doctor’s parking lot.
At this point, my ovaries that had served me so well for so many years were deemed useless and I made the decision to have them removed prophylactically – maybe next summer.  As I discussed this with my family, the consensus was ‘why wait?’  So I set off to find the very best surgeon to do the job.  (Hey, we’re in Seattle!  The very best surgeon IS definitely here; I just had to identify who it is!)
After some research and conversations with those in the know, I decided on Dr. Pam Paley, whose is THE star in this field.  When I met with her, she said that my surgery would be the easiest of her whole week, as she normally deals with cancers that are already doing plenty of damage.
We set a date of January 7, 2014. 
Easy-peasy! Right?
Well, once I heard what the prep for surgery was to be like, it felt like more of an ordeal.  But that’s because I’m a wuss. My instructions were to stop eating at noon on Sunday (for a Tuesday surgery!). I could only have clear liquids on Sunday, to be followed on Monday morning with that vile GOLytely stuff. 
(Banana for scale.)  (Bad Reddit joke…)
That GALLON container comes with about a cup of salty chemicals at the bottom.  When water is added, it turns into a gallon of gooey, slimy, salty liquid. It comes with something the company calls a flavor packet but you should know that the flavor packet did exactly NOTHING!
Here’s my PSA for how to get through the prep phase of pre-surgery or pre-colonoscopy:

  1. A few days before you are instructed to stop eating solids (in my experience, this has been about two days for pelvic surgery and one day for a colonoscopy), start eating lightly.  No red meat, no hard-to-digest foods.  I had chicken soup, applesauce, bananas, toast, etc.
  2. Also a few days before the fast and colon clean-out, make sure you have or go out and buy the following:
    1. LOW-SALT chicken broth (The one I bought had just 70 mg of salt. Right next to it on the store shelf were broths with up to 1000 mg of salt, so read those labels carefully!)IMG_1436
    2. Jolly Rancher sour apple hard candies
    3. Other gummy candies
    4. Other clear juices.  (“Clear” means you can see through the juice when you hold it up to light.)  Vitamin water, Snapple, and ginger ale are also great.
    5. Liquid or powdered flavor enhancers.  Go for the strongest they have!  I chose acai berry, but I was allowed red liquids.  If you’re having a colonoscopy, you will be asked to avoid red liquids, in which case maybe go for tart and tangy, like lemon-lime.
    6. Clear minty mouthwash.
  3. The night before you are to begin the GOlytely stuff, mix in the water and refrigerate it.  You can mix in the flavor packet if you want; it really won’t make a difference.  Sad smile
  4. When it’s time to drink the stuff, try some of the following hints (and remember, you’ll drink enough of it that you can try new things for each couple of glasses):
    1. Fill a glass with ice.  Insert a WIDE straw.  Pour the GOlytely mixture over the ice.  Add a flavor enhancer if you like.  Mix well. Put the straw way at the back of your mouth and CHUG!
    2. Immediately after you finish the liquid take a swig of mouthwash. It will take away the salty flavor of the mixture you just drank.
    3. Then suck on a Jolly Rancher.
    4. Don’t do this over the sink if you have ever puked into a sink!  The association might be more than you can bear!
    5. My favorite way to drink the GoLytely was to heat it with an equal part chicken broth, microwave it to hot, but not so hot that you’d have to sip it daintily, and then CHUG that.  This felt great after all the icy cups of cold stuff and it tasted FAR better! In fact, it tasted just like salty-but-not-too-salty chicken broth!  Had I known how much better this was, I probably would have done this for the entire gallon.
  5. Now you wait.  I waited for a few hours thinking that I’d done something wrong and I would never poop. And then, suddenly: IMG_1433 (We got Cards Against Humanity for Christmas from Elisabeth’s boyfriend, Danny.  This is the one I pulled out first when the gift arrived on the day of my colon prep.  How’s THAT for serendipity?!)
  6. I was told to buy baby wipes for use on this particular day. That worked fine until a few hours in and then it began to sting!  I suggest flushable Wet Ones without the stingy chemicals.
  7. You’re through the worst of it now, but you can’t stop until you “run clear.”  I was still drinking boullion and pee-pooping (that’s what it feels like – peeing from your butt!) TWELVE hours after I’d taken the first swig!
Just when I was just about finished with the bowel cleanse ordeal, Elisabeth showed up with a gift pack for me!  Mmmmmm – bittersweet chocolate, raw almonds, a coxy-comfy shirt, slipper socks, and some Burts Bees facial wipes and lip balm. What a sweety!
Elisabeth, who is a neuro ICU nurse at Swedish Medical Center, had volunteered to spend the night at our house and get up at 4 AM to take me to the hospital, stay with me there as necessary, and take me home, hopefully on the same day – though a hospital bed had apparently been reserved for me “just in case.” 
I think Tom was just as grateful to Elisabeth as I was! Early in the morning on “chug day,” after a day of fasting, I was going through my normal morning routine of feeding dogs and hubby and making Tom’s lunch, when I got light-headed and collapsed onto the floor. I didn’t faint, I just had to lie down right then and there.  Tom left the room, but I wasn’t sure why.  Was he finding his phone to call 911? I called to him, “I’m OK…” so he would unnecessarily call 911.  He came back with… a PILLOW!  So sweet!  So compassionate. But so… well, not nurse-like. 
Elisabeth and I left for Evergreen Surgical Center very early in the morning. 
I have to say that I am SOOO impressed with Evergreen Hospital’s Surgery Center!  From the second we arrived, we were surrounded by kindness, compassion, knowledge, and professionalism. 
And creativity! Look at this passport that guided us through the process:IMG_1446[1]
With the amazingly kind and compassionate staff and the surgery passport, we were off to a good start and I felt great.
Then came time for the IV insertion.  I have a history with IV insertion and hidden veins.  Remember this?  Knowing there would likely be an issue with finding a vein, I tried to prepare myself in a few ways.  I drank lots of water until exactly midnight before the morning of surgery, knowing that veins are easier to find if you’re well hydrated.  I also got a prescription for ONE Xanax tablet, to be taken upon arrival to the hospital, knowing that, based on my history, this part would be full of anxiety.  I took only half of the Xanax – which turned out to be a big mistake! 
The nurse tried to inset an IV first on my left hand.  Nope, no go.  I started to shake.  Then she went for the right hand, even numbing the site before poking around.  Again, no go.  In a tribute to what a great nurse she was, she then turned down the lights and asked everyone to be still and quiet for a bit.  That did help.  But what really helped is that she went out to find my anesthesiologist, asking him to do his magic – which he did on the first try.  Elisabeth was VERY impressed!  I didn’t look.
The anesthesiologist then gave me more “calming meds” in the IV and off we went to the operating room.  I remember looking at a HUGE machine in the corner of the room and asking if that was “my robot.”  “It sure is,” he said… and then I was out!   
I’ve had issues with waking from anesthesia before.  I’ve been incredibly nauseous, groggy, and just plain “yukky.” Thanks to the conversation I had with this anesthesiologist (before he gave me more “calming meds”), I wasn’t nauseous at all upon waking!  He gave me a patch to wear behind my ear (which is still there, the next day).  I woke up slowly and gently.  Thank goodness, because the anesthesia is what I was most scared of!
The surgery only took about an hour and a half, thank goodness.  I was wheeled back to Elisabeth and we slowly got ready to go home.  Everything ran completely smoothly and I can’t speak highly enough about Evergreen Hospital’s Surgical Center.
I also can’t speak highly enough about my daughter-nurse, who took such great care of me!  Tom came home to take over when Elisabeth had to leave for her shift as a *real* nurse, and he brought each of us a half-dozen roses!
Tom is staying home today to take care of me – and also to build a kitty condo for these three, who are keeping me company in bed today…
And now I’m ovary-less, but I have five rather pesky, painful holes in my belly.  But I have no regrets and I’m glad I decided to have these dried up eggs removed! I can’t say what I’ll die from someday, but it won’t be uterine or ovarian cancer, that’s for sure!

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jennifer said...

Good for you Carol - and great story!

Also I can't wait to see the cat condo that your perfectionist builder is going to make for your little clowder.

allieg8r said...

So glad your surgery went well!

Margaret said...

Great ideas for my next colonoscopy. I was one of those people ready to puke into the sink. I never did, but I did dry heave. You have an amazing family! I'm so glad it's over with and that you're on the mend. xoxo

Tonya said...

What a wonderful post! And Margaret is right—you have an amazing family! And oh, yes, I certainly remember that sensation of "peeing out my butt!" Lol! I applaud your bravery and I'm so glad this is "behind" you. Ahem.

Goofball said...

wow what a curageous but very wise decision. How well thought off to make these choices right when you are ready for it!

Theh preperation sounds like a horrendous ordeal though...I would probably chicken out. and I am so afraid of anaesthetics too, I also need xanax meds before surgery! First time I had nausea waking up, but since then I also announce that beforehand, and then the doctors seem to do it differently so you don't wake up with nausea.

I am glad you are so well taken care off and that surgery went well. Have a good rest now!

Lorrene said...

Shouldn't it be called Hardlygoes instead of Golightly? I'm glad it's over for you.

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