Hysterectomy: A Journey I Wasn’t Ready To Take

I had expected to write about a trip I had just taken to California, instead I’m writing about a journey I am reluctantly embarking upon — the journey toward a hysterectomy.  When I started Caffeine And A Prayer, my uterus was certainly not on the list of topics I thought I’d discuss, but for so many reasons, it’s become one I must.  For some of  you, I’ll understand if it is a post you’ll want to skip (future employers, my father, and husbands of my best friends…) 

A few weeks ago, as I groggily woke up from anesthesia after having a surgery called Novasure (or an ablation) done, my gynecologist leaned in and said, “We found a polyp, but I don’t want you to worry, 99% of the time these turn out to be nothing.”  And yet, even in my hazy state, something inside me knew this was not going to be the case for me.  As I became more alert in the recovery room, I asked my husband what he knew about the polyp and he told me he had been given the same information and he felt like everything was going to be fine.   Knowing that I already had my follow-up visit scheduled for three weeks away, I decided it was beyond my control and not to obsess about it.

I was packing my suitcase to leave for the Yahoo! Mother Board Summit and literally seconds away from a quick phone meeting when I saw my doctor’s phone number come up on our phone at 7:30 in the evening.  Instantly I knew this had to be bad news — this doctor has been with me through two high risk pregnancies and evening phone calls always signaled a complication.  Good news was always delivered during the day by a nurse, bad news came from him in a personal phone call during quieter evening hours.

The short story:  pre-cancerous cells in the uterus.  Because I had just had the ablation, the immediate risk was probably handled, but the ablation itself would make detecting future growths more difficult until it was too late.  The best thing to do was to have a hysterectomy.

I was trying to keep my composure and trying to think of the logical questions to ask while thinking, “I have to be at the airport at 4am.  I can’t deal with this right now.”

“How long is the recovery time?”

“Well, about 4 weeks.  Two weeks where you are recovering like you did from your c-sections and then another two weeks where you will probably need to take it a little slow.”

Four weeks.  Are you kidding me?  How am I going to just stop life for four weeks? 

We agreed we’d discuss it further at my appointment upon my return from California.  I hung up.  The person trying to call me got through and still stunned, I mumbled, “I just got some bad news that I need to discuss with my husband — can we talk in half an hour?”

I found my husband in our bedroom.  “Honey, I need to talk to you…”  A few minutes later, he looked pale.  JavaDad doesn’t handle medical things well.  He also doesn’t like anything that threatens me.  I essentially dropped the c-word (cancer) on him, told him I’d need him to ask if his parents could come help us during the recovery period, and would be leaving town with all this news as well as our 4-year-old and a 6-year-old to care for for a few days.  Nice.

My modus operandi in such situations is to dive into research.  Except I was traveling.  Yahoo! was flying out the bloggers who participate on their Mother Board to a summit in Silicon Valley and I had tacked on some extra days so I could see friends I haven’t seen since 2002 and also family members who were driving up from LA.  I was determined not to let this news ruin the trip and there were few opportunities to sneak in some research time.  When I did, I found the HysterSisters web site — full of information and an online support group community.  This is where I discovered that there was so much I did not know about the journey I was about to take.  I didn’t even know which of the several different types of hysterectomies I was going to have — I had no idea there were so many different kinds.   I also didn’t realize how many different reasons people may go through this procedure, nor how many different emotions women have about it.

I took a sleepless redeye home and had a surreal, sleep-deprived appointment with my doctor where I got more answers, but realized afterward I still had more questions.  I have to see the gynecological oncologist later this week to set the date for my laparoscopic total hysterectomy (or “TLH” in HysterSister-speak) and this time I’m going to be well-rested and have a written list.

In the space of 13 days I’ve gone from informing family and a couple of friends to letting more people know as I’ve had to let co-workers and the volunteer organization I’m president of know that there may be an entire month where my availability will be limited.  I’ve asked some people who have had the surgery to share their stories.

And then there is the endless emotional loop.  The this-is-no-big-deal-they-caught-it-early-oh-my-God-I-have-small-children-and-I-almost-didn’t-have-the-ablation-what-if-this-wasn’t-found loop.  I have friends who have what I call real cancer.  Cancer with a capital C.  With chemo and radiation treatments.  I’m just getting a body part cut out of me.  So I feel guilty for stressing about this at all — after all, I know I’m going to live.   And yet, with one notable exception, everyone I’ve told the news to has reacted with a blanched look on his/her face and then a hug and “Oh no!  I’m so sorry!  Please let me know if there is something I can do for you!”  In fact, it is their responses (which are very touching!) that scare me a little bit more.  I’ve mostly tried to tell myself, it’s no big deal, I go in, I get something cut out, it’s over.  But it kind of is a big deal. This is my second bout with a pre-cancerous diagnosis in that region of the body.  They are leaving the ovaries in.  Will I go through this again down the line?  Is there something lurking somewhere else inside of me?  The mind, it’s a dark and scary place sometimes.

I’m so lucky in so many ways.  This was discovered due to my ablation, a procedure where they essentially burn out the lining of the uterus, which I had done because of severe anemia caused my monthly cycle.  So for me, I am not going to mourn the loss of my uterus, I had just rendered it useless in terms of a reproductive organ by choice last month.  Our family has been complete for quite some time now — I won’t wonder “what if” about any children we didn’t have.  And I won’t consider myself any less of a woman for not having a uterus or a monthly cycle, in fact, given how much I’ve suffered from my monthly cycle, this will give me a new lease on life.  Fortunately, by keeping the ovaries, I should not go into early menopause.  And the way I am the luckiest is that ablation was actually the second procedure we were doing to treat my anemia, as the first failed.  I honestly feel a divine hand at play, leading my doctor to find that polyp so we could detect this early.  This could have been so much worse.

As hard as I’ve tried to avoid sharing this story on this blog, I’ve found I have not been able to write about anything else.  The topics have piled up, but my hands would not type, I faced a complete writer’s block.  And perhaps it is because in much of my research about hysterectomies, I found many clinical descriptions, and many frightening or depressing stories, but few that demystified the experience.  As one person on the HysterSisters forum pointed out, many of the post-op stories are the scarier ones because those who have a quick and easy recovery aren’t hanging out on the forums — they are back to their regular life and don’t feel the need to come back and post on the forum.

So perhaps this is part of the purpose of me going through this.  I can’t tell you how often I will post during my recovery, but periodically during the journey, I will post in the hopes that it will be a resource for someone else who has to take this path.  Over and over again in life I have found that I’m dragged unwillingly in directions I don’t want to go and yet it is precisely where I am meant to be.  And somehow it gives me the wisdom that I am later meant to pass on to someone else.  Thanks for indulging me in a little blog-oversharing.  It may not have been the post for you, but I hope it hit home for someone.

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Comments

  1. Lending you my virtual support…and I’ll be happy to bring your family some meals during your recovery.

  2. Ditto W&M’s comment. Keep us updated on what’s going on!

  3. The blessing of bad news is you find out how many good friends you have! Thank you so much for your support. I’m anxiously awaiting tomorrow’s appointment and hope that I will have a date on the calendar by the end of the day.

  4. So sorry you’re going through this, and I hope the recovery goes smoothly.

  5. Well I guess that there could be worse things than losing your internal lady parts. The big-C word being one of them. So cheers to you for trying to look on the bright side (which is always a pain in the ass to do when faced with bad news). I’ll be sending my virtual support.

  6. Hey, no I hadn’t seen all of this. Yikes. You will get through this. And I just added you to my daily prayer list. If you need me, or just a venting place, you know where to find me. Lord, absolutely surround JJ with fresh Spirit breath and life. Hold her up wheen she doesn’t know which way is up. Strenghten her when life feels at a standstill. Keep her mind above feeling overwhelmed. In Your name we thank You for already moving for her. Amen.

  7. Hi! I found you through Creekside Learning’s blog… she mentioned that you had surgery; I’m guessing that this was the one she’s talking about. I just wanted to send you healing thoughts and best wishes for a speedy recovery.
    Warmly,
    ~h

    • Thank you so much! This is indeed the surgery! I’m healing — and have my ups and downs with Percocet right now. The most important thing is it is behind me and the first pathology report looks good and hopefully the full pathology report will be clear as well!