I’ve compared the sudden discovery of pre-cancerous cells and pronouncement by my doctor that I needed a hysterectomy to a tornado whipping through my life. Unlike a lot of people who find themselves in this situation, I was not gradually building up to this diagnosis due to complaints of symptoms that then led to a discovery of cancer. There were no cysts or fibroids or mysterious pains we were looking into — the discovery of the pre-cancerous cyst was a “lucky” happenstance of dealing with the anemia from my monthly cycle. Had it not been for anemia, this would never have been discovered, so the concept of a cyst, much less of cancer, never even crossed my mind. A hysterectomy at 40 wasn’t even a blip on my intellectual radar.
But the upside of a tornado is that it comes in unexpectedly — without the building dread of a hurricane — does its damage, and then leaves just as quickly as it came.
I had enough time to run through the gamut of emotions — fear, anger, denial, dread, grief, anger, anger, anger, frustration, but not enough time to really dwell on any one of them very long. I had enough time to rally the troops and get a plan together. And yes, I blogged. I had very public obligations that involved a wide group of people I needed to let know what was going on and once I started letting one circle of friends and associates know, I realized I might as well let another. I decided that the benefit of this experience might as well to be to open it up not only for those who know me in person, but for that person who finds herself in the dark, searching on the Internet for real-world answers like I was a few weeks ago, and is slightly terrified by what she finds.
So this is the fulfillment of that promise. This is my story, what I went through just before, the day of, and thus far in recovery. What I hope will be helpful to someone in a similar situation sometime soon. If you found this post through such a search, it may help you to read the first two posts to get a little bit of background (Part I and Part II).
Every story is different
Whenever I’m faced with a new, daunting situation, my reporter instincts kick in. I start asking around to see if anyone has been through something similar and has words of wisdom to share. While I found the HysterSisters site to be somewhat helpful, I found that very few of them were really going through the same scenario I was — the same diagnosis and the same surgery. My biggest area of concern was understanding what recovery would be like so I could line up the appropriate resources and I would get all kinds of answers. This frustrated my Type A desire for concrete information, until a friend who had had a hysterectomy a few years ago told me, “just like everyone’s birth story is different, everyone’s hysterectomy story is going to be different. You can’t assume your experience will be just like someone else’s.” This was good advice for me to hear.
Now is the time to accept acts of friendship
I found it difficult to accept a friend’s generous offer to set up a “care calendar” which would allow others to cook meals for my family. After all, what if I end up not being “that sick” after all? What if recovery is easier than I thought? I had a lot of excuses in my head. Stop the excuses. If you have friends willing to do this, let them. It has been a true blessing. It is not just about the nourishment of the body, but the nourishment of the soul — it means a lot to know that someone cared enough to prepare a meal not only for me but for my family. It also provides some structure for the day — it is a big “event” in a day that for the patient is one big endless day of pain, pills, and sleep. Though my mother, a Southern lady, sometimes felt a little displaced at not doing ALL the cooking, I reminded her she could still cook lunches for us and that helped me want to eat things — the smell of home cooking wafting from the kitchen would make me want to come from my pill-induced slumber and eat something. The desserts so kindly left with the dinners have been a huge treat for the kids and given them something to look forward to each day. I have not been up to much “visiting” but it has meant the world to me to know that friends have demonstrated their friendship in this way.
Additionally, Facebook has been my little window to the world. Email is a little too much for me to handle as there is work to be done in the email, but Facebook gives me a chance to read some updates, post updates, and crack a few jokes. I’ve been astonished that friends who aren’t even necessarily part of my daily back-and-forth on Facebook have kept tabs, offered words of comfort, and traded jokes with me on Facebook. It’s much easier for me than a phone call right now and it brightens my day (and night) as I can reach over and re-read the comments.
My advice in this area is to figure out some concrete things people can do for you and then if they ask if they can help, let them. It may be meals, it may be helping drop off or pick up the kids, it may be something else, but people will want to help and not know how. It’s much easier to line up the help in advance and then cancel it if you don’t need it then to turn it down and the scramble around to look for it at the last minute. Some people may not be able to do anything more than call or email and that’s okay, too. Don’t judge your friendships based on how well people can help during this time, other people’s lives go on, but do acknowledge those who pitched in.
Let’s hear it for the guys
I worried about talking about “girl parts” so publicly, but I have to say I have been so impressed with not only the general level of support, but the support of the men in my life. To be clear, I’m a married woman, most of these men are married men, we’re talking strictly platonic and sometimes even business-level friendships here, but the fact that men are comfortable publicly posting on Facebook (a few emailed) to send their good wishes and prayers on a surgery of this nature seems significant. A few of them referenced the experience their wives have had with this procedure. I haven’t fully processed what I think this all means — just that I think it is wonderful that men feel fine with expressing their support for a female friend with this kind of a surgery in a public forum. I don’t think that would’ve happened a generation ago even if the technology existed (and mind you, I’m talking about men from all generations — Boomers, X and Y). Women are used to being so vocally supportive, it somehow seems socially significant that the men are stepping up as well — way to go, guys!
Why you should talk about it
Talking about my surgery publicly has allowed other friends to share their stories with me. Stories about current health issues they are going through (I’m praying for you!) Stories about recent health issues they’ve undergone. Stories about things long in the past, but that are a big part of who they are now. You have to do what you are comfortable with, but for me, being frank and open on all fronts allowed me to be able to not feel like I was hiding anything and also allowed me to deal with some parameters realistically, as in, “I’m sorry, I can’t do that, I will still be recovering from my hysterectomy then.”
I also had to talk about the surgery with the JavaKids because I knew they’d hear me use the terms with doctors on the phone, with friends, etc. With my children, being very straightforward and factual is the best way to go. They are both very scientific minded so I can’t throw a lot of fairy dust into stories. I simply explained that they found some “bad stuff” in Mommy and they needed to cut it out in a surgery or operation called a hysterectomy. That I would go into the hospital and they would cut the bad stuff out and then I should be fine but I would have a “boo-boo tummy” for a while. They asked me some questions so I went a little more in-depth — they wanted to know how they would go into my tummy so I explained they would make some small holes in me, one of which would be in my belly button. They wanted to know if it would hurt so I explained the doctors would put some numbing stuff on me and that they would give me medicine that would make me go to sleep for a while. We talked about the fact that I may come home on the same day or I may spend the night at the hospital. JavaBoy wanted to know more about the instruments used, so I found an animation about the harmonic scalpel online to show him. Somehow I mentioned that there would be some smoke (water vapor actually) inside me and this led to a silly conversation about whether the smoke would come out my ears or my belly button. The JavaKids were very disappointed I didn’t come home spouting smoke rings like the caterpillar in Alice In Wonderland after the surgery. I decided not to go into great detail about the glue holding my incisions together and instructed JavaDad to hide the KrazyGlue just in case the kids got any wise ideas.
I have, at other times, made a point to tell them that if “something should ever happen to Mommy, I will become an angel in heaven and watch down on them always.” I’ve made sure to reassure them that I don’t expect anything to ever happen to Mommy, but I wanted them to have that to hold onto, just in case. Fortunately for us, they find religion a source of comfort and talk of heaven and angels is as normal as talking about ants on a blade of grass, so though it is an emotional thing for me to say, it didn’t seem overly meaning-laden to them.
The day before — Mommy the Grouch
Every story is different. You may not have to do this, but I had to do a bowel prep, and I’ll spare you the gory details except to say that means swallowing magnesium citrate and drinking only clear liquids starting noon the day before your surgery. And they don’t mean vodka!
If you have to do this, my best advice is get all your “clear liquids” (clear Italian ice, broth, clear juices, etc.) ready and then isolate yourself from your family and watch TV as much as possible — unless you can maintain a pleasant demeanor while going through this humiliating practice. It is probably NOT advisable to do what I did and schedule a conference call with your boss. Fortunately I still have a job.
Before your surgery the hospital/scheduling nurse will probably pester you to death with questions. This will give you plenty of chances to counter-pester with questions. By this point I had answered all my questions. Just keep a keen ear out to make sure everyone seems to be onboard with the same plan you have — if you are removing ovaries, make sure everyone is checking to be sure you are removing ovaries. Likewise if you are NOT removing ovaries, make sure everyone is saying you are NOT.
Surgery – it’s showtime
Since we had to be at the hospital at 6am, I said goodbye to the kids at bedtime. And later I went back in and kissed their sleeping heads again. As much as I tried not to go there, I did briefly allow myself to think, “what if…” What if something goes wrong on the table and I don’t wake up. What if they find really horrible cancer in the muscle of the uterus? What if this is the first step in a journey I don’t want to take? I forced myself to just move forward — it’s out of my hands. I have a strong personal faith, but I am a control freak, so this is a constant struggle for me. I had to trust that what was meant to be would be.
At this point you’ve mostly lost control of the ball. Remain hypervigilant about everyone who comes in and what they say, but you have to trust that you are in good hands at some point and now is a good time. The anesthesiologist was going to great pains to reassure me of all the safeguards they had in place, and since I’ve been through a few surgeries, I looked her in the eyes and said, “I trust you to take care of me.” If you haven’t had anesthesia before, feel free to ask all the questions you need in order to get comfortable, but this wasn’t my first rodeo and I’ve come to see anesthesia as the best possible nap.
Our minister came to be with us and I’m hoping he wasn’t offput by the fact that JavaDad and I had hit the goofy joking stage of stress at this point. Pastor had been with us through two c-sections and a few scary hospital visits, we appreciated his comforting presence and prayers. I think we’d hit the point where we felt like it was all up to God and the docs and we might as well have a few laughs along the way. As Pastor reminded me, I had two jobs at this point, “Go to sleep. And wake up!”
As usual, all I remember is the “We’re going to give you a little bit of oxygen….” and then next thing I know I’m in the recovery room wondering who ripped the hell out of my organs. Keep in mind at this point I’d gone 23 hours without a Diet Coke, so someone wisely gave me a Percocet and a Diet Coke. I don’t think I actually crushed the can with my bare hands after finishing it, but somehow a second Diet Coke appeared out of thin air. May God bless whomever stocks the recovery room fridge.
JavaDad also appeared (I notice, not until after the first Diet Coke…) and told me the first pathology report looked good. I’m pretty sure I said some horrible things and muttered something about food, pain pills, and Diet Coke. I hope I told him I love him.
I was pretty dopey but after I was done being dopey I was more aware of the pain and I said so. I may have threatened someone’s life if they didn’t give JavaDad a script for decent drugs, or that may have just been in my head. Either way, we left with a script for Percocet and no actual violence occurred. We left the hospital 3 hours after my surgery. So far I haven’t met anyone else who has left that fast after a hysterectomy so I figure it gives me mad bragging rights and street cred. “Oh yeah, well I’m so tough they ripped all my girly parts out of me and I was home by lunch!”
An extremely chipper volunteer wheeled me out to the car and I have a vague recollection of JavaDad calling someone to say we were on our way home. I walked in the door expecting the JavaKids to give me a huge welcome and instead, they called out, “Oh, hi Mom!” from the other room where they were playing with their grandmother. Your kids may love you more than mine love me. (I joke, I joke.) Take note: Grandmas visiting from Florida will trump a mom who has only been gone for a few hours even if she’s had all her girly parts taken away any day. Especially if you can’t blow smoke out of your belly button.
You may be hoarse from the tube from anesthesia — which EVERY person you speak to on the phone will comment on.
The pain? Let’s just say I felt bad for every cat we had had spayed. I really hoped their drugs were better than mine and I will endlessly question the vet about this on any future cat spayings. What followed was a blur of days/nights of popping pain pills and sleeping when the pain would allow me to. Too much pain and too little focus to read more than a trashy magazine. Falling asleep in the middle of tv shows. Sitting up in chairs sometimes put too much pressure on the internal stitches. I was told walking would be good and would help restart the digestive system, but it hurt and it is easy to get tired. Because it is blazing hot outside, I made two field trips to extend my walking to more than just inside my house — one trip to the used bookstore, and one trip to the library. I am a wild child. Sometime in the next week I plan to go to a Hair Cuttery and let them wash my hair for me. I’m living it up!
I did have my ovaries removed, so I supposedly will start early menopause. Sometimes I feel hot — are those hotflashes or is that the result of the pain medication? I don’t know. We won’t start any hormone replacement therapy just yet until my body heals a little more.
The final pathology report came in. JavaDad took the call because I was asleep, so I didn’t get the thrill of receiving the news myself nor did I get to quiz the doctor. All I know is the report was clear – no cancer. This is good news. It does play a slight headgame with you when you are still in pain from the surgery — why did I do all this then? We had already removed the pre-cancerous cyst. Should I have gone ahead and removed the ovaries? Intellectually I know this was the right decision — I will never have to worry about cancer in these areas, where pre-cancerous cells once existed, more could’ve cropped up any time. I have the added benefit of not having any monthly female troubles and though I had not gone in to complain about monthly pain, I did have a lot of monthly pain. But the human mind can’t help but play the what if game. I am a lucky, lucky, lucky woman and I don’t mean to play down how lucky and grateful I am. I am blessed.
I’m still recovering. Impatiently so. Still tired. Still have pain, but less of the “come here and let me scratch your eyes out” level of pain. I’ve kicked JavaDad out of bed as I seem to require all of the bed and all of the pillows. I want to do more than I can. I’ll think, “hey, why don’t I walk across the room and reorganize that bookcase?!” Which will become, “In ten minutes I’ll do that.” Which ultimately becomes a matter of me maybe moving three books around sometime that day and then going back to bed.
I cannot thank my family and friends enough for riding out this tornado with me. I do believe in the power of prayer and I think your prayers help make this turn out to be a best case scenario. From the meals to the comments and emails to reading the posts, each of you have supported me in your own way and it meant a lot. I’ll be glad when the glue dissolves and the incisions heal, but most of all I hope that my experience can be used to help ease someone else’s journey, so please share my story with anyone who needs it and I’m happy to answer questions to be the best of my ability.
Disclosure: I’m a patient, not a doctor and cannot provide medical advice. All information in this post is based solely on my individual experience and sh0uld not be substituted for advice from your doctor.