I did a lot of research before undergoing this surgery. I knew full well that the recovery was not going to be a picnic. There would be good days and bad days, peaks and valleys, ups and downs. I’d take two steps forward, one step back. It would be a roller coaster ride. Pick your favorite cliche. I knew all of this going in, but nothing prepared me for the reality of the physical and emotional trauma a surgery like this inflicts.
Six weeks out, I am doing okay. I am eating solid food, I’ve gained back some weight, and my pain is for the most part under control. I still tire easily and my inside are still very tender and often uncomfortable. I am experiencing pretty severe neuropathy in my fingers and toes from the chemo agent that was used, and my hair has thinned significantly. I have had a persistent bladder infection since the surgery, and I am experiencing mild menopausal symptoms from my surprise hysterectomy. And though this may sound like a laundry list of complaints, I am actually doing pretty well physically.
Emotionally, though… My emotional recovery has been just as hard, if not harder, than my physical recovery. For some reason, I have garnered a reputation as this brave warrior with great strength of spirit and unending good humor. I think people are far too kind, but who am I to argue with the public? I suppose I was able to make it through diagnosis and chemo with my sense of humor intact, but this surgery and recovery very nearly stole my smile, my jokes, my spirit. My ten day hospital stay was miserable, despite the incredible care I received from my multitude of doctors and nurses. I was so miserable, in fact, that I could only bring myself to flirt with my super cute surgical resident the day or two before I was discharged. Oh, the lost opportunity!
After I woke up from the 8-hour surgery, I was told that everything went well (not that I remember; I was high as a kite for about three days). They removed the primary tumor and a foot of colon, along with my appendix, gallbladder, falciform ligament, scoop of liver, three peritoneal mets, twenty-six lymph nodes, and (surprise!) my ovaries, fallopian tubes, uterus, and just a sliver of my cervix. I had known going in that there was a chance they’d take my ovaries (colon cancer tends to spread to the liver, lungs, and ovaries), but when my surgeon looked that my ovaries, she saw something extra suspicious. She paged a gynecological oncologist to the OR, and he performed a hysterectomy and bilateral salpingo-oophorectomy. Later, when the pathology report came back, we learned that there was more cancer than normal tissue in both my ovaries, although there was no cancer present in my tubes, uterus, or cervix.
My uterus and I have been through a lot together. I’ve birthed four babies–two for me and two for some very special daddies. For six consecutive years, I was pregnant or breastfeeding and my life was pretty much centered around my various reproductive organs. A huge part of my identity is being a mother, both traditional and surrogate, and while one’s reproductive bits by no means define a person, it was a bit of a shock to be suddenly…hollow. When I was first diagnosed, I was in the early stages of a second surrogate pregnancy for another very special pair of dads. Giving up that potential pregnancy was one of the hardest things I’ve ever had to do, and though I knew then that I’d never be pregnant again, being separated from those particular innards struck an emotional sore spot. The truth of the matter is, ever since this miserable cancer journey began, I haven’t been able to parent as I should. During chemo, I was out of commission for days at a time, and I was never fully there even on my best days. I’ve been completely out of the day to day since the surgery, and while I’ve been able to see and interact with the kids more the last couple of weeks, I feel like my relationship with them is broken in some fundamental way. Motherhood means being there, so what does it mean that I have been absent? This surgery was supposed to give me more time with them in the long run, but missing out on the past couple months feels like a failure. I feel like a failure.
But here I am, riding the waves–struggling through the uphill climbs, enjoying the downhill slides, mixing my metaphors like a champ. I’ve struggled with my ileostomy–the leaking bags, ulcerated skin, and, you know, having a piece of intestine sticking out through my belly–but now that my mom and I have bag changes figured out, having a poop bag isn’t such a big deal. My reversal surgery is on the 19th, and while I’m grateful that the poop bag is temporary, I hear the recovery from this surgery isn’t a picnic. I’m told I’ll be trading the poop bag for diapers.
But it is what it is, and at this point I am just eager to get it done, recover, and resume my life. I want to move back home, go back to work, and rebuild my relationship with my kids. Chemo will still kick my ass, I’ll still have those ups and downs, but I am determined to be there, in whatever condition.
Silver lining roll call:
- Staying with my mom and Steve during my recovery has been a life-saver. It’s also made me revert to teen-age-hood, which has allowed me to perfect my eye-rolling and passive aggressive sighs. Also my mom does my laundry and makes me baked potatoes. I could go on.
- My village!! The people in my life are beyond amazing–they take care of me, they take care of my kids, and they remind me to just keep swimming.
- I now know what partially digested food looks like while it’s travelling through the small intestine. Who hasn’t wondered that??
- No more pesky periods. Monthly menstruation is for chumps.
- I now have some kick-ass scars. I’ve never been a bikini person, but I’m tempted to become one.
- I will never take a working GI tract for granted again. The ability to eat, digest, and shed waste is a fucking miracle, and I am incredibly grateful for every meal I eat.
Jenessa,
I’m sorry for not reaching out sooner, I just didn’t know what to say. I still really don’t but I wanted to tell you that even though some days you may feel like a failure, you are not. When you may not feel like the brave warrior, you are. Without a doubt. I cannot even begin to imagine what this journey has been like for you but you have faced it head on, warts and all and made the impossible choice for just the chance of getting more time. I am in awe of your perseverance and tenacity and I thought you should know.
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Just saw your post.. I had my ileo reversal about 16months ago and although I was so anxious about it (all you hear are horror stories) I honestly haven’t looked back. It takes time and you might have to dig deep for a bit MORE patience and its never quite the same as before but it’s fine. And I really didn’t even mind the bag in the end but can say its definitely better not having it! Good luck!
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You are absolutely amazing. Jenessa! Brave, strong and wonderful sense of humor. Wishing you a speedy recovery.
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Never feel like a failure. You are the ultimate mom, giving your children an amazing gift. You are going through THIS to be with them. You are so much more than you will ever give yourself credit for. I have never met Ramona or Solly but I can see from your posts they are smart and amazing. Kids are resilient and yours will be strong and inspired by the road you are on. “Mothering” is so much more than just being physically present. Think of all the times your kids did the right thing and you weren’t there. I call that a parenting WIN. Keep Your chin up and rock a bikini. #fuckcancer.
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Hi Jenessa, I think about you very often and I am in awe of your committment to keeping up with your blog posts! One of these days, if you’ll have me, I’d love to see you. All the best.
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You, Jenessa, are amazing. We have never met, but my twin boys, my wife and I are lifelong beneficiaries of your generosity and kindness. Some of my boys first words were Ben and Maya. Thank you, thank you, thank you. Love and strength, Courtney
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Dearest Jenessa …. I always appreciate your posts. Failure is the last word anyone (including your children) would use to describe you. You are definitely a warrior through and through even when it doesn’t feel that way. Don’t be so hard on yourself! You are loved. You are admired. Everyone is rooting for you! So glad you’re being cared for by your mom. Can’t wait until you can say goodbye to that ileostomy!! 👋🏼💩 💼
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Jenessa,
I am one of Suzie’s friends for a long time. I think I met you in NC, and I’ve been hearing about you for years. I am a parent, too… and a cancer survivor and I just had a hysterectomy with my last birth. I real feel what you said about being present for your kids. It’s so painful to miss presence with them… for us and for them. It is what it is though. I’m glad your acknowledging your pain and noticing your lack of presence. Some parents never even notice. Wishing you all the best in your bag-to-diapers surgery, and more importantly, the fucking recovery.
I’m also an English teacher, so I appreciate the punctuation pun.
All the best,
Jess
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Also, “your” should be “you’re”! Sorry, I’m tired!
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