Some of you may know, some of you may not... But I have had a mentally, physically, and emotionally exhausting battle over the past [nearly] three years with a beast called a pilonidal cyst.
Now hearing this may make you think "It's a cyst. What's the big deal?"
I'll 'splain...
A brief overview of the pilonidal cyst- basically a ball of debris that develops under the skin on or around the tailbone. They usually develop from a hair follicle that becomes embedded with "debris" (skin cells, little flecks of hair, etc.) and tunnels downward. It can happen to anyone, truly. You can be pre-disposed to getting them based on your anatomy and genetics- my mother had one!
There is a common misconception that they only occur in men with hairy butts. I assure you- I do not have a hairy butt. There is an ever-growing list of strangers who can attest to that fact. Yes, the list of people invited to peer down into the crevasse of my posterior is now in the double digits, I'm sure, and consists of doctors, surgeons, and nurses, my mother, my sister, and my sainted husband.
They can be problematic, or you can be completely unaware that you even have one. I was completely unaware that I had one, until the cyst ruptured after a good knock on the tailbone whilst sledding during Christmas of 2012.
Right here. This is where it all started.
And it was only a week later on New Year's Day I wound up staring at a positive pregnancy test, complaining to Landon and my coworkers how much my tailbone was bothering me since this bumpy sled ride! The next day, January 2nd of 3013, I was in the hospital having emergency surgery to clear out the tennis ball sized abscess that developed upon the rupture of the cyst. Because it was infected, and because I was pregnant, I had to just let this heal [which is a gruesome process- the hole stays open, packed with gauze and heals slowly from the inside out- for months] and had to wait to have the cyst removed at a later time.
Fast forward to February, 2014. I have beautiful 5 month old Emma, I have recovered successfully from the first surgery, and now it's time to have the cyst removed before it becomes a problem once again! Long story short- I had to see a different surgeon, and this one pretty much did a crap job, and the cyst was back within a few weeks of healing from the surgery. Great. But, with having to take so much time off work, I had to wait again to have it taken care of.
Fast forward to late June 2014. I go see a different surgeon, he says "Great! Let's schedule something soon and get that cyst out!"
Fast forward to early July, 2014. I find myself once again staring at a positive pregnancy test, and wondering why my tailbone hurts so bad. Except this time I knew why. Back in I went, under the knife, clean out the infection, let it heal. And that happened twice during July and August of 2014. It also happened again toward the very end of my pregnancy with Rory.
Fast forward to July of 2015. I have my nearly two-year-old Emma, 6 month old Rory, and a few weeks of summer left which meant Landon would be home to help me. I got myself teamed up with a surgeon who was confident he could get rid of the cyst once and for all, and who had me laughing the minute I met him. That's the way to make it in those situations... "Hmmmm... I've got to examine this poor woman's bare backside... Better crack a few jokes to put her at ease."
Good call. That's my kind of surgeon.
The surgery went well, but left me with an incision bigger than ever, after years of abuse to the area. And once again, time to prepare myself for the long recovery process that I was all too familiar with by this point. Bandage change appointments every day until it was manageable for my dear sweet Landon to take over. Then we were introduced to the vac...
Ever heard of a wound vac? Basically a suction machine you have to strap onto your body somewhere that is attached to a tube that is attached to a sponge that gets packed into your open wound and then sealed shut. Now imagine that on your butt. Now imagine instead of a machine, it's a child. A child that you can never put down. A child that, let's say, "stops breathing" any time you bend over past a 120 degree angle [seriously I couldn't lean over more than 6 inches without the damn thing alarming and shutting off!] A child that is constantly humming and occasionally screeching in your ear 24 hours a day and 7 days a week. A child that has to remain attached to your butt and plugged into the wall all night as you sleep. Haha. "Sleep." Right...
BUT- it's supposed to speed up healing. It's supposed to make this long, drawn-out process of closing a painful, gaping hole go much quicker.
Supposed to.
After two weeks of frustration, tears, nights up late on the 1-800 help line [that should honestly have been called a 1-800-screw-you-because-we-don't-care line], and very little healing, the damn thing finally came off. Apparently in a small percentage of patients, the vac is more irritating than it is beneficial and it actually prevents the wound from healing.
Well, of course, I'm one of those people.
Once it came off, it seemed like smooth sailing. Suddenly I was healing by leaps and bounds, and the incision was getting smaller by the day. But it just wouldn't be "me" without some sort of new catastrophe...
One day I pointed out a sore spot next to the incision to the wound care nurse whom I was seeing for my weekly appointment, and she said it was no big deal, probably just a little irritation from so much tape. But it kept getting more painful, then red, then hard. I called the surgeon's office and through some miscommunication of the facts, instead of being seen immediately, it was determined I could wait two more days for a convenient opening in the schedule. I bit my tongue (mistake #1,438 on my part) and agreed to wait. By the time the surgeon was able to look at it two days later, it was a golf ball sized abscess. So now I have another gaping hole in my backside in need of packing and daily bandage changes. And this one was fresh. Painful. Unlike the nerve-deadened incision from the cyst removal that had already been operated on a handful of times.
Fast forward about a week and a half, it's been a long and tiring week of Landon being gone for 13+ hours a day nearly every day, and little sleep because, surprise!- apparently its the perfect time for Rory to have a [nearly] double ear infection. (One ear was infected, the other was just starting) Rory hadn't slept or eaten normally in days, and had just got over a 48 hour fever. My entire family is out of town at an event that we could not possibly attend with 2 small kids- one sick- me recovering from surgery, and because Landon had to work.
The previous day I had noticed another sore area, but it was so close to the last one so I didn't think much of it, plus my mind and energy had all been focused on Rory. Until Saturday night when I'm home alone with the kids and suddenly it's red, hot, painful, and bulging beneath my skin and I feel sick and sweaty. Dear God, please not again... ran through my head over and over again as I called the surgeons office to talk to whomever was on-call.
"Get to the Emergency Room."
Great. Except I'm home alone with my 6 month old and 2 year old and I can't reach my husband at work, and like I said before- every.single.member. of my family was two hours away. [My great aunt Pat has MS, and every year there is a 50 mile awareness and fundraising walk through Door County that my family helps out with, some do the walk, run water stations, work the silent auction, it's an important weekend every year and I hated missing it] buuuuuuuut... Turned out to be a good thing that I wasn't 2 hours from home that night.
Sobbing over the phone to my poor mother [who was two hours away and couldn't possibly help me but whom I called anyway because- she's my mommy] we brainstormed who I could get ahold of to help me. Finally got ahold of Landon, and got ahold of my friend Nicole. Landon stayed home with the kids as it was getting close to bed time, and Nicole (who happens to be a nurse!) got me to the ER and stayed with me. I could not have picked a better substitute for my mother or husband at that time. She made sure everything was taken care of. Amazing.
The nurse practitioner I saw in the ER [who was wonderful, by the way] numbed me up, cut into the area that was red and bulging, but found nothing. She cleaned me up, and sent me home with antibiotics, as it was clearly some sort of infection.
On Monday my mom came with me to see the good 'ol surgeon yet again. He numbed me up and cut about two inches deeper [you read that right, two inches] and found the abscess. It was not what anyone in that room was expecting. It was huge. It was full of infection, and it "ran like a faucet", in my mother's far-too-descriptive words. There was also no way to know how much anesthetic was actually needed until it was too late. I cried. I nearly passed out from the pain. I would have gladly endured the pain of labor and childbirth instead of this [except, it did go much more quickly!]
When all was said and done, the surgeon sat there scratching his head trying to come up with some explanation as to why this keeps happening to me. He also said if he would have known just how extensive this abscess was, he would have sedated me. It was the size and shape of two ping-pong balls side by side and more than two inches deep. This is not supposed to be happening.
So now, with an ass resembling Swiss cheese, it's time to just press on with our week which, once again, includes very little time with Landon home. Once again, Rory's not sleeping, and crying much more than usual. Once again, Emma can't understand why mom's paying more attention to her brother, and is hurt and seeking retribution.
This week could have very well turned out to be the absolute worst week of my life. However, taking it one hour at a time, accepting help from anyone who offered it, and counting my blessings are the things that got me through it.
The past three years have been filled with pain- more pain than I thought I could endure at times. But pain goes away, and I count it as a blessing that I have learned just how strong I am, and how much I am able to endure.
I think the process bringing a child into this world has the power to teach any woman her own fortitude, and I did it twice. Living and loving life through sometimes terrible pain also girds your mind, body, and soul against giving up. Yes, I have spent the last nearly 3 years in pain more days than not, but when I look back I can hardly remember the pain. I remember meeting my beautiful babies. I remember feeling the bonds of my marriage growing stronger through these trials. I remember holidays and birthdays and lazy days. I remember what it felt like the day I learned just how much my own mother loves me.
I am unbelievably lucky to have family members and friends willing to rearrange their schedules to help. It has been a humbling experience, and I would never trade that. All of the miserable hours I would not trade for learning first-hand that I have people in my life who will be here for me when I need help, and whether I ask for it or not. And with lots of help, we survived the week and the pain is lessening day by day.
It is a blessing that I get to be at home with my kids. Even though the baby is sick and the toddler is crazy, we're all short on sleep, and I haven't had a conversation with my husband that included full sentences in three days, I am at home to be with them through all of it. I'm not confined to a hospital, and my babies are here with me. I reminded myself so many times this week how lucky I am and how many other people endure so much worse.
In the wise words of my beloved aunt, "Everyone has their own shit pile."
Well, this is mine. And I can handle it. With help, encouragement, love, ibuprofen, deep breathing, and my sense of humor intact... I can handle anything.
