Post-op Day One

Well, Katie made it through the surgery without any complications.  Feeling under the weather now
with pain pump keeping the pain at bay.  Plan is to be out of bed this morning sometime for a walk and then maybe a nice cup of tea this afternoon.

Heading to OR tomorrow: Update Number 1

Ok- reporting as a very hungry pre-op patient over here, but I just want to throw out a few logistics. This blog initially started on Caring Bridge as an easy way to update friends and family when my parents, brother, husband and I have been too consumed with my care/surgery to effectively communicate with all of our loved ones (or too drugged, as in the case of the latter named). Anyhow- we'll be reviving that tradition over the next week, so come check out the blog for updates (though they will not necessarily be written by moi). Of course, please feel free to reach out to any of us personally as well, and we will all do our best to get back to you. Reaching out is always incredibly appreciated, and helps to keep our spirits up, even if you don't get a response I promise you it's lovingly accepted! Here is a basic account of what we know right now:

1. I'll be heading to the OR tomorrow morning (the 29th) around 11am at North Shore Manhasset hospital

2. I will be staying at said hospital for about 1 week

3. The details of my surgery are very vague. They will be removing the peritoneal inclusion cyst (which now logs in at 4 liters!), they will lyse adhesions from my small bowel and they will try to fix the source of these recurrent cysts, but they do not currently know what that cause is and, so, we are not exactly sure what we are dealing with as far as surgery length. We do know it will be an open laparotomy (this is the opposite of a laparoscopy, meaning my abdomen will be completely open to allow them better visualization). Unfortunately for me, this means a much longer recovery period and much longer hospitalization.

4. I am very, very hungry. Already. Seeing as I am not even 1/10th of my way through my NPO period, this is not promising (as far as my sanity goes, at least).

Anyhow- Just wanted to send out a pre-op update. If you'd like to reach out, this blog, my email, Facebook, my phone, text, etc. are all fine options, but do know that I will be totally incapacitated tomorrow and very likely incapable doing much of anything for many days thereafter. My focus will be on not watching food commercials, banning anyone from my room that mentions what they ate for breakfast, and trying to not get so pissed off when the nurses and my family shove the spirometer in my face every hour. But do know that your messages always put a smile on my face.

Love you all!

xo

MY TERRORIST

"You've always been so brave." These were the words my surgeon left me with this morning as I exited his office and walked towards purgatory (a.k.a. that little white room where the soft-speaking secretaries work out the details of your fate). "So when would you like to book your surgery?" where the next words that reached my ears, though my mind was far off, tuning into the faint noises of the sterile waiting room where I could detect the sound of my two year-old daughter crying. She was telling my mother that this place was "so scary." I smirked. Despite her experience being limited to the waiting room, where the fish in the tank swam seamlessly in tune with the spa music that permeated the space, the discordancy of that room's purpose and its semiotics was not lost upon her. I re-focused on the secretary's question, "Never," I answered, "I would like to book this surgery...never."

January 29th. That's the date. That Thursday morning will bring yet another time that I will have to put my "brave" face on and walk into that O.R. and lay down on that crucifix-form table. It is on January 29th that I will allow the anesthesiologist to drip the poison into my veins, and as they ask me to begin counting down from 10, all I will see is that face. That adorable little face. And I will be terrified.

You see, Dr. Procaccino, that steely look you see in my eyes is no longer bravery. It is now terror. It is not stoicism, just fear. It is the look of someone who has so much to lose. It is the face of someone who faces invisible enemies. You are now looking into the eyes of a mother. 


When I fall asleep on January 29th I will know that I will wake up with a 2.5 liter cyst removed from my abdomen. I know that I will have adhesions lysed from my small bowel. I know I will wake up with many tubes, and I know that I will almost immediately begin the obsessive week-long (or longer) wait until food or drink can pass my lips. What I don't know is if I will still have ovaries. Those tiny things that carry within them the very keys to life. "We will do all we can to save them," I have been told. Though I am anxious at the thought of losing them, they have already worked the greatest miracle of my life. And for that I am forever grateful.

I almost didn't write today, because I have almost lost hope. The space between these major recoveries is becoming more and more slim, and the prospect of recurrence of a peritoneal inclusion cyst is vast. I am losing hope of being healthy enough to realize my dreams of becoming a doctor. I am losing hope of my ability to be a stable force in my daughter's life. But, mostly, I am terrorized by the idea of hearing that little voice crying in a waiting room where the wait seems to be eternal, and her fears are never assuaged.

THE PACKAGE THAT CHANGED MY LIFE: IBD CHANGES MY COURSE, YET AGAIN

Not sure where to begin. I am exalted, broken-hearted, exhausted, defeated and empowered, all at the same time. This summer has been full of surprises- most of them unwelcome. Soon after my own discharge from the hospital, my grandfather ended up admitted for palliative cancer care; a surprise to those of us close to him as he had been running around baking bread for the entire town just a short time before. I missed three weddings, fairly unexpectedly, and am now feeling very down in the dumps as I was supposed to be boarding a plane to Ireland tomorrow.

Somewhere in the midst of this nightmare, a neat little package arrived on my front door stoop. It was a package that had been in the back of my mind all summer, but had been overshadowed by my own health and that of my very beloved grandfather. My husband tentatively presented this piece of mail to me just two weeks ago. It had been sent overnight in a Priority Mail envelope. The sender's address read: Columbia University. My heart skipped a beat.

Of the months upon months I have spent in hospitals, between my own issues, my father's, my grandfather's, and other loved ones, I have never been able to help but wish I could be on the other side of the hospital bed. It's been years that I have sat in that bed, or in that chair next to the bed, just dreaming. But, folks, my wish has at last been granted. I am so very pleased to announce that I was admitted to Columbia University's Postbac Premed program! 

The news that I will be soon embarking on the track to doctor-hood has been met with very mixed reviews, mostly in response to the condition of my own health. But what these naysayers DON'T know about IBD, is that it prepares us for anything life throws our way. Sleepless nights? GOT IT! The sight of internal organs? SEEN IT! Tubes down throats and life-threatening complications requiring emergency surgery? BEEN THERE, DONE THAT! Oh- and have I mentioned how we, as IBD warriors, have more passion, more drive and more emotional investment when it comes to helping those in need? 

Many comments have, similarly, referred to the fact that it will be 6-7 years before I can call myself doctor and an additional 3-5 before my residency is complete. Well, another thing IBD has taught me is that life is precious, unpredictable and, ever most importantly, we live it only once. No one knows if they will have the good fortune to be on this earth even tomorrow- what's the point of concerning ourselves with how old we are when we attain major life goals?  

There are so many reasons to NOT embark on this arduous journey: my health, my daughter, my husband, the long hours, the hard work, the financial investment or the unavoidable stress involved in becoming a doctor. But I have so many more reasons to get ready, set and go. And so many of those reasons are the same as those just cited. My history of poor health does not hold the key to my future, my daughter will benefit greatly from a loving mother who is also a positive female role model, and I've never met a challenge without excitement and anticipation about the next curve ball and how I'm going to hit it out of the park.

Columbia, I'll see you on September the 2nd. You and I are going to show IBD what's up.

Until then, hoping positive vibes and good spirits on my current "side of the bed" can help ease the pain of my ailing grandfather. Pop- you've given me a hell of another good reason to fight my way to M.D. It's another road that won't be easily traveled, but that has never meant it isn't worth taking. You taught me that. And I'll think of you every step of the way. 

Team Challenge- BIG news!!!!

So I have some exciting news for a change! Well, it's both disappointing and exciting.

As many of you know, I was in the midst of training for a Team Challenge half marathon in Dublin, Ireland that is taking place on August 4th when I was blindsided with five small bowel obstructions and, shortly thereafter, found myself in the hospital recovering from yet another laparotomy. Unfortunately, this means that I will be in no shape to run Dublin in August and, sadly, I will have to forego this trip altogether. Those of you with IBD know that the absolute worst part of this disease is missing out on everything, and this trip meant a lot to me. IBD life is full of surprises, and they are rarely welcomed. BUT!....

Shortly after canceling this trip I was bestowed a great honor by the Crohn's and Colitis Foundation of America. I have been named the Honored Hero for the Team Challenge Tri State Triathlon team, which will race in Clearwater, FL on November 9th of this year. I am so humbled by this opportunity to (hopefully) inspire this team to swim, bike and run harder and faster towards a cure for IBD. Interested in joining us? Find all the info here. Participating in Clearwater last year was one of the greatest experiences of my life and despite having IBD I think I've had a pretty awesome life, so that's saying a lot! I promise it's an experience that will stick with you- in a very good way.

Can't participate? Consider making a donation here. This still reflects my Dublin fundraising efforts- but all of these funds go to the same great place.

I am so very excited about being able to participate in Clearwater- albeit in a different capacity from last year, but hopefully an equally powerful one. Hubbie, Billy, will be running the race in my honor, along with my bestie, Erin M., and hopefully we can even find a few more of you out there to join Katie's Crew!

WHAT TO DO WHEN A LOVED ONE IS HOSPITALIZED

Yeah, yeah, I'm still here. Bad news is I'm starting to become lucid, too. It's always best when you're relatively unaware (or unconcerned) with what is going on due to high amounts of painkillers and other kinds of mind-altering drugs.

So, out of boredom I am going to write a post that I've been meaning to write for three years now. I have not written it because I didn't want to come across as rant-y or unappreciative or didactic, or any other kind of adjective that is unlikeable to the masses. But the thing is that I have a lot of experience in this area and a lot of people (fortunately) don't. My dad has undergone 7 major surgeries, spending months in the hospital and years in acute care, so I have vast experience as an observer, family member and advocate. I have had UC for 11 years and have undergone 5 major surgeries, spending a total of 3-4 months hospitalized, so I also have an intimate insight as a patient. What I want to write about is this:

What do you do when a family member or friend is sick, hospitalized or recovering from surgery?

Again, I am only writing this because I see the blank look of "I very much want to help, but have no idea what to do" on so many people's faces. And rightly so. If they and their families have been blessed with good health, why would they know what to do? I just think it's downright helpful and from a patient's perspective (I have many IBD friends!), so many of us say the same things over and over about what we expect and/or need from all you healthy people out there. So, here are the "Top Ten" things you need to know:

1. Reach out!!!!! Don't be afraid of saying the wrong thing. Send a text, call, leave a voicemail, send an email, leave a Facebook post or message. It doesn't matter your method, it's just very important that you do. It makes a patient feel like a million bucks when you do it, and if you're close to said patient, it definitely does NOT go unnoticed if you don't.

2. Don't expect a response!!! We are often overwhelmed by taking care of our substantial needs for rest and by the amount of people reaching out. We LOVE to listen to the VMs, read the texts and emails, but we'd be spending all of our days responding and picking up the phone rather than recovering and resting if we responded to everything. Trust me- your notes get read and they are SO appreciated.

3. Don't ask, "what do you need?" - I will never, ever ask anyone for anything, and a lot of patients are like this out of pride, embarrassment, or just a genuine sense of not wanting to bother anyone. JUST DO IT! Which takes me to my next point…

4. Drop off a meal, show up and babysit, or if you have no time to cook, send over a gift certificate for a pizza. It's so hard on a family trying to not only take care of another family member, but to also juggle all the essential tasks that "down and out" family member is not capable of doing. Trust me, just show up with something helpful to offer. It shouldn't cost much or take much time, but it goes a lot further than an expensive gift and is much more appreciated!

5. Don't forget about a patient's family. Sure, surgeries and chronic illness are hard on a patient, but they are even harder on a family. Call the patient's family and see how you can help, or as stated in #4, just show up at THEIR house and do their dishes or let them escape to the grocery store for an hour. Give them just a little time to feel human.

6. Always call before a hospital visit - this is especially true in those days when you are freshly post-op. I know that I am never up for visitors in those first few days. Your rest is too important and you are just feeling too downright out of it to interact with anyone- but that's just me. Others may definitely be up for a visit. Towards the end of my hospitalizations I am dying for visitors- but a 9pm visit is never exactly, well, welcomed by me no matter what the stage of recovery. All of you that have spent time in hospitals know what those nights are like!

7. If you can, stop by the hospital! Now, the hospital is not always close and everyone is super busy in their lives and of course this is not always possible or, as mentioned, even necessarily wanted by the patient. But when your jailed up in your room for a week, nothing can cheer us up more than an hour-long distraction from a loving friend or family member. It goes a long way in showing how much you care.

8. Keep your anxiety to yourself! We're the ones in the hospital with tubes shoved up all of our orifices, we have enough anxiety in our lives, so leave yours at home please!

9. Ask questions!!! It shows that you care about what is going on and if you don't ask questions, at least don't make assumptions. When I've been NPO (no food or liquids) for 10 days and come home to have my first meal, I don't need anyone asking me, "should you really be eating that?" Be an informed family member and friend.

10. We like presents. Especially ones that matter. Flowers always cheer me up, don't get me wrong, but a small donation to Team Challenge (that probably costs less than that bouquet) means much more, or go for a run and donate the proceeds to CCFA in the patient's honor through Charity Miles, or cook a meal so the family has one less thing to worry about. These are all things that make a real difference. What we patients really need is a CURE and on a very practical level, we also need some food in our bellies. It shouldn't cost much, but think of a way that you can make a gift that matters.

As a last note, just don't do nothing. You don't need to do all 10 of these things, of course, but just a card in the mail or offering an hour of your time to help out goes a LONG way. We're all busy, of course, but just remember that these are the times when friends and family are needed most!

Thank you, thank you to all of you for the absolutely overwhelming outpouring of love and friendship over these last couple of months. This was in no way in response to a lack of receiving all of these very cherished gestures, but quite the opposite. I'm really writing for those blog readers out there that aren't as lucky as I!

Feeling very lucky and loved,

K

Post-Op Update

Ok, maybe I'll offer a short update. First time I've been able to flip the laptop open!

Surgery went very well. It was three hours long. The laparoscopy quickly turned into a laparotomy (meaning it went from scope to a midline vertical incision down the center of the abdomen). I had part of my small bowel resected and all of the fluid from the "cyst" was removed. They also removed a lot of scar tissue from my small bowel and my abdominal cavity. All in all, very successful, but not exactly "best case scenario" of no bowel resection/laparoscopic shorter surgery.

Things have been moving along slowly post-operatively. I was running a high fever, but that has been gone for more than 24 hours now. I am still NPO (no food or liquids), but had my epidural catheter removed from my spine this morning. Foley catheter has been out for a couple of days, too! Up and walking, not without support yet, but up and walking a bit nonetheless. Pretty severe abdominal distention still going strong, accompanied by now more severe pain (now that my "epi" is gone).

I was begging for a Sunday discharge, but that's not looking too likely at this point. Let's hope for Monday! I never like to see three of the same day of the week in the hospital in a row, and seeing how I was hospitalized for a few days the week before my surgery, if I wake up here on Tuesday that would mark the third Tuesday in a row being in this very uncomfortable bed! Aiming to minimize this hospitalization to 7 days- wish me luck.

I'll update upon discharge or if anything of significance happens. Oh- and I got the BEST SURPRISE VISIT EVER FROM THE MOST SPECIAL PERSON EVER TODAY!

For now- go get your Team Challenge on and kick this disease's a$$ for me, will yah?