The Big Day ~ Hysterectomy by DaVinci robot

Before 10/10/13

We arrived at Sinai in Baltimore for pre-registration around 6:30 a.m.  My surgery via DaVinci robot was scheduled for 8:30 a.m.  When we arrived on the second floor to check in, they were surprised that I was there so early.  I didn't ask questions until 8:32 and they said that I wasn't on the schedule until 10:30 a.m.  Guess I got bumped!  I saw Dr. Miller get on the elevator, so I figured it would be a while.

I don't remember how long I was in the pre-op room.  Dr. Miller came to visit several times.  He said that there had been a trauma the night before that had pushed the schedule back.  I reviewed my list of issues/procedures with him:  Full hysterectomy (uterus and cervix), bilateral oopherectomy (both ovaries), salpingectomy (both fallopian tubes), and the endometrioma posterior to the cervix in the cul-de-sac.  He reviewed the alternatives once more and gave me the chance to change my mind and walk away.  Then I had to sign a "back-out" form.  Mom asked how long the surgery would be, he said 2 hours.  She clarified, so from the moment you take her it will be 2 hours?  Oh no, it takes an hour to prep her before we can cut.  So it will be three hours.  Glad she asked so they don't start to panic!

The surgical nurse mentioned that I'd be getting a shot of heparin in the belly to prevent blood clots.  The anesthesiologist started some happy medicine and we were off down the hall to the kissing hallway where I said goodbye to Mom and Jason.  They asked if I had any questions, the only question ~ can you wait till I'm asleep for that shot in the belly? A few seconds later I was asleep and I'm guessing I got that shot of heparin!

Recovery ~ 3:45 p.m.

At 1:38, Jason called to the front desk.  There was a call from the operating room for him.  They are half way done.  They should have been done by now.  My family had questions, but the call was brief.  Did they not start on time?  Are they having complications?

At 3:00, Dr. Miller came out to talk to my family.  He had found a lot of scar tissue around the pelvis that he didn't see during the laparoscopy in August.  He explained that he had filled the bowel, kidneys and liver with blue dye to make sure all would go as it should.  No leaks!  I'll be in recovery for 45 minutes.  They'll get to see me at 3:45!

Special note from Mom.  "And oh by the way, your anestesiologist is cute.  Yes!"

My family came back to see me at 3:45 on the nose.  I was very groggy and they were letting me have ice chips.  There's a catheter, and the pee is blue!  Pain level 3, blood pressure 120/67.  Family was only allowed to stay for 10 minutes.  Many families are waiting for their person to get into a room.  Each family is allowed 10 minutes every hour for several hours. 

Finally in room 661 at 7:30 p.m.  What a day!

After 10/10/13

Bowel Prep

My surgery was scheduled for Thursday, October 10, 2013.  I previously had several pre-op bowel preps plus a colonoscopy that failed.  There is so much stress in knowing that you are going into surgery less than prepared.  In 2006, the emergency colon resection brought my worst fears to light.  Infection!  I had multiple abscesses that had to be drained post-op via CT Scan with a really long needle.  I was going to do anything within my power to avoid that again.

Although my surgeon felt confident after the diagnostic lap in August, I was still not convinced that my endometriosis was as good at he thought it would be.  His office gave me the basic bowel prep.  I decided on my own to make very sure that it would work.

I began a low residue diet on Sunday.  This was very difficult as I spent the day at a picnic, but I made good choices.  Sunday and Monday I ate well-cooked veggies, thin spaghetti with very little sauce, jello and homemade chicken stock.  I planned to use Miralax twice on Sunday but I got a rare case of the squirts and no longer felt the need to be so drastic. 

I began my liquid diet on Monday evening and all day Tuesday.  The bowel prep consisted of the magnesium citrate at 8 a.m. ~ I added Tang and Ginger Ale to help with the taste.  My throat has an aversion to flavors or textures that don't belong, and that drink makes me retch.  I took the tiny laxative pill at noon.  I continued to drink fluids, jello and broth all day until an hour before we had to leave for Baltimore.  Mom gave me some diapers to help with the hour and a half drive to Baltimore.  Thankfully I didn't need them!

I packed a snack of jello for the evening and had some more before I did my nightcap, an enema!  I was running clear for the first time in my life!  It's sad that this is my proudest moment to date.

Post Op #1

Well technically this is post op #4.  I don't really remember much about the first 2.  They were also laparoscopic like this one.  I was a lot (a lot) younger then.  And I was much more confident then.  Humility may be helping me this time.

I wasn't afraid.  I think this laparoscopy being diagnostic in nature made me feel very at ease with it.  As the nurse was administering my IV, the motion sensor sink turned on.  I told the nurse, Kim, that I think I have a visitor.  She thought so too.  I'm pretty sure my Gramma was there at that moment.  I'm not crazy, promise!  I just felt really safe.

My surgeon came in at 10:00 running early for my scheduled 11:30 surgery and was as kind as always.  He wondered if we would be removing an ovary today.  I didn't think he was removing anything.  He was okay to continue with that plan.  We would do a cystoscopy which I was aware of, a bladder exam.  He also decided to do a proctoscopy.  Hmmm?  I reminded him that I hadn't done a bowel prep, something that had bothered me from day one!  He said it's okay.  I also made him aware that I hadn't had a bowel movement since the previous Thursday, the day of my colonoscopy.  This was day 7.  He said it's okay.  He's only going to look just inside, promise!  Looking back I'm thankful for this time with him before the surgery.  I had questions about recovery time that I hadn't asked before.  He also mentioned that he would be able to do my hysterectomy in 2-3 weeks.  When he saw the freaked-out look on my face, he said we can wait!  It's not cancer so it can wait!

At approximately 12:30, I was wheeled away and kissed my mom goodbye at the kissing door (the last stop family is allowed).  I felt like I was 12, but I didn't care.  I had said goodbye to my husband a few minutes before.  I woke up what felt like days later.  I remembered the voice of Amy, the anesthesia nurse.  My new friend Kiko was there checking my vitals and explaining what was happening as I "came to".

As I was waking up, Dr. Miller came to talk to me.  I think I remember most of this conversation.  He said that he was surprised at how good things looked.  He flashed some pictures that he had in his hands.  He feels that the next surgery will likely be robotic.  There is some scar tissue between the uterus and colon but not nearly as bad as he would have expected 7 years later with the amount of pain I had.  He had stretched my bladder.  This should give me relief for a few months. 

Once I had glasses on I quickly realized that Kiko was Francisco from the Philippines.  Kiko is a typical nickname for Francisco.  These are the things I remember from post op.

I think my mom came to see me first.  I really am not sure and I'll have to ask.  She had my glasses, so that's my logic.  Dr. Miller had come to them in the family waiting area to explain the results.  She also noted that things aren't as bad as he expected.  He feels he can do the hysterectomy robotically and may be able to leave an ovary and remove only part of the uterus.  This will require some research on my part!  He explained that he had found no endometriosis on my bladder and had asked a colleague to take a look.  They decided to distend the bladder to stretch the nerves.  This should give some relief to the bladder symptoms for 3 months.  This has me wondering what happens after that?  Do I have Interstitial Cystitis?  Is there a recurring bladder issue that I should be concerned with?  

I feel good.  I have soreness at my incision site.  I have only one incision and another spot that is sore, likely from the needle that inserted the gas.  I am 3 days out.  I'm tired, although I did not nap today.  I slept most of the day yesterday and then 12 hours last night.  I napped more yesterday than my 3 year old niece Izy.  She was a trooper for not waking me up (she had adult supervision other than me).  She wanted to see my byoo byoo (boo boo) several times.  The day immediately after surgery I spent with my parents and I slept a lot.  Hubby was back at work, saving days for the big one.  

The gas under my diaphragm is still crackly when I breathe while sitting.  Usually when I get up to walk I'm able to burp a little.  Every little bit helps!

My post op appointment is not until September 3.  Maybe I should have scheduled this before my surgery?  I'm not sure I totally understood my responsibilities.  Now I wait!
 

Time to Prepare

I have arrived.  The time that I have been dreading for seven years has come.  This period in my life that I have been pretending would never be if I will it away.  Living in a fantasy world.  Thinking that maybe, just maybe I wouldn't get sick again or maybe even end up pregnant.  Each month convincing myself that the cyst symptoms might actually be a miracle baby!  Of course it never happened.  No doctor has ever given me any hope that it would.  That didn't stop me from believing...there's a Journey song there!  After my stage IV endo diagnosis, I lost my right tube sometime that same year.  No one knows why!  Doctors don't like the idea of "blaming" one thing or another.  I had many abscesses following my surgery in 2006.  Most of them were drained with a really big needle via guided CT Scan.  I had fever and infection for days before the abscesses were identified.  I also had aggressive endo.  No one knew for sure, and at that point it didn't matter.  

None of it matters at all really.  On to the next stage of life.  Preparing for my hysterectomy.  I'm very pleased with my surgeon's cautious nature.  We sat down to talk several weeks ago before the exam.  He already knew what we were up against, my gyn had sent him 33 pages of records.  *(I regret not having kept my own records.  If you are beginning the endometriosis life, get yourself a thick binder.  Request copies of every ultrasound, surgery pictures, tests.  Keep good records.  I promise you, when you finally need them, you'll be too exhausted to recreate years worth of records.)  

I have homework!  There are several pieces of data my surgeon wants in his hands to prepare for the hysterectomy.  I'm calling it a reconnaissance mission   I've already completed a pelvic and an abdominal MRI.  The MRI was requested to look for an abnormalities on the uterus and bladder. Endo cannot be seen on any tests, but if it has invaded or damaged an organ, that damage may be seen.  I've already visited my family doctor.  For someone so sick, I'm clinically healthy!  EKG, chest X-ray and blood work were all good.  I'll have a colonoscopy in two weeks to make sure the endo has not invaded the wall of my bowel.  And on August 14, my big sister's birthday, I'll have diagnostic laparoscopy.  He plans to examine the condition of my bladder (cystoscopy) and get a visual of the colon, uterus, peritoneum...basically recon mission in my abdomen.  I admire his careful nature.  I'm thankful that he's humble.  I feel like I'm in good hands.

After August 14, I imagine I'll have some time to heal and get strong.  As I attempted to schedule this first surgery, the surgeon's schedule was booked out more than a month.  I suspect I'll have a follow-up appointment at which point I'll schedule the "big one".  In this perfect world where I think I can control something, I'd like to plan my surgery for October 1!  Then the waiting begins, who knows if I'll sleep between now and then!

Lately...

I had a glowing review at my ultrasound in March.  I turned 35 in April.  That must be what happened.  My next period was painful.  This was a new kind of painful, or rather an old kind of painful.  There was pain in my tailbone and radiating from my left hip.  After the period passed and the pain didn't, I visited a new chiropractor.  His "big picture" treatment was very inspiring.  My pelvis had tilted, likely in response to pain.  I felt great!  I felt taller!

It didn't last long.  Soon I was having abdominal pain, if you can call it pain.  Really it felt like every organ in my lower abdomen was angry.  Next came the chills.  This wasn't the first time this angry abdomen had presented with a fever.  Several years ago I visited a reputable massage therapist that worked in freeing scar tissue.  After the first visit, consisting of some abdominal, tailbone and hip work, I had several days of aching, high fever and chills.  This felt like that and has happened a few times over the last few years.

And so it began...my current battery of tests and painful days.  I had a CT Scan to rule out appendicitis.  The next day my fever hit 102.6*.  My family doctor ordered me to the ER.  I spent June 13, 14 and 15 admitted for a "suspected" tubo-ovarian abscess.  Many IV antibiotics and one for the road, there is no way anything could survive that cocktail!  I didn't feel bad while on the antibiotics ~ 12 days.  

The day after the antibiotics ended, the burning pain in my low back began.  It worsened each day.  By Monday, day 4, I made an appointment with a doctor at my gyn's office.  My scheduled follow-up from the hospital stay wasn't until Wednesday.  I hurt so bad I couldn't wait.  I've peed in many cups during this episode.  Today it was painful.  Not a burning when I pee feeling, but the same angry abdomen pain.  Still, it wasn't obviously gyn related.  Since everything "seemed" fine upon examination, I was sent home with muscle relaxers and pain medicine and instructed to visit the chiropractor again.  Also on Monday via ultrasound it was very clear that I never had a tubo-ovarian abscess.  There were no remnants of it.  The chiropractor was scheduled for the next day but it wasn't to be.  I couldn't pee.  Not only did it hurt, but I could barely make it happen.  Another visit to my gyn's office.  A different doctor (Dr. Naymick) this time mercifully catheterized me to remove 500 cc's of urine.  This examination was bad.  It was tears running down your face, horrid pain, crying and hoping for it to end, doctor apologizing, rearranging cervix, the endometriosis seems to have invaded the vagina, nurse grabbing tissues, "the time has come" no good very bad kind of bad.  He gave me a pain shot in the hip, compassionately wiped a booger off of my nose and referred me to a surgeon.  My mom and dad came to get me.  I waited in the parking lot, in my car.  I collapsed into their arms out of pain, devastation, exhaustion and fear.  This is only the beginning!

The beginning

Today was good day!  Yesterday too, actually!

I'm feeling whole for the first time in over a month.  There's still a sadness though.  Knowing that in just a few short weeks, our lives will be turned upside down.  Pain and struggle will be an everyday reality.  I'm looking hopefully to the future.  A future of no painful periods.  No periods.  At 35, I should have at least 15 more years of them.  But, I learned a few weeks ago that endometriosis has won.  It was a hard fought battle, but I have no choice but to call it.

It started more than 20 years ago.  At 11 years old, painful heavy periods were my reality.  I thought I must be a wimp.  I sometimes think that my terrible memory is a a safety mechanism.  At 18 years old, the bouts of pain were not regular but were unbearable.  When they would hit, the doctors would say, "stomach flu" or "std" (um, no) or "food poisoning".  My health teacher told me about endometriosis.  She said to pay close attention to my cycles.  This pain may be related to ovulation.  She knew.  I believed.  That wasn't enough to make a doctor see it.

About 13 years ago, I stopped birth control pills.  Slowly the periods got worse.  Month after month more symptoms appeared.  I'd have heavy bleeding, clotting, painful and bloody bowel movements, low back pain that kept me up all night.  Doctors were not interested.  In 2004, I was able to convince my gyn that I had most of the symptoms of endometriosis.  I was immediately referred to a specialist.  The details are fuzzy (selective memory loss).  In April of 2005, nine years after the first debilitating ovulation pain, I had my first laparoscopic surgery.  Endometriosis is confirmed!  Stage IV, visible to the naked eye and a case that the doctor claimed she would encounter only once in a career.  Still not sure what that means exactly!

I spent the next six months getting injections of Lupron Depo. The chemically induced menopause was manageable. I had some hot flashes.  Emotionally I felt like a zombie.  Sometimes I felt like I was sitting across the room watching my life go by, like an out of body experience!  I'm not sure how much of that my family knew at the time. I had become quite the little actress over the years.

The Lupron served a purpose. Much of the endometriosis had dried up. A small nodule remained in the cul-de-sac (the small area between the uterus and the rectum).  Laparoscopy #2 followed in January of 2006. The surgeon quickly realized that the nodule would require a more intensive surgery.  

This is where my story got intense!  In March of 2006 a gynecological oncologist attempted to separate the nodule that connected my uterus and my colon. My colon perforated. Introduce gastrointestinal surgeon.  After removing 6" of the sigmoid colon, I was fortunate, thankful, amazed that I had walked away from the surgery without a colostomy but not without infections and intestinal challenges.

The following years flew by! I experimented with Depo Provera and Pycnogenol. I developed severe eczema on my hands.  I was diagnosed with an endometrial cyst in the cul-de-sac. I continued to monitor for simple and complex ovarian cysts.  I knew that it was only a matter of time before the time bomb would go off!