Hello World.........

1/19/13--Saturday--Day 98--Nothing is Predictable and You Just Never Know!

Wow, I've been absent from the world for the last 12 days since I went into surgery Monday, Jan. 7th.  What was supposed to be a one night surgery turned in to two surgeries, seven different procedures, and an eight-day hospital stay.  Through it all, the good news is that the pathology reports on the abdominal tumor and the axillary lymph nodes were more favorable than not, and in the long war, that will make the biggest difference.

I am so thankful Greg put information on the blog so many of you could keep updated and I apologize for not blogging before now.  I know his last post left many of you hanging, but we both just had so much fighting to do and honestly, until today, I just wasn't up to thinking about all of this.   I'll try not to repeat what Greg has posted, but simply relate some of the crazy, mixed up details from the patient view.

On the day of the surgery, we knew having a 1PM surgery time would be somewhat disadvantageous, but we never imagined a nine hour surgery would make me the last one out of OR.  I kept my nerves down going into surgery by handing out the Kisses of Hope goodie bags we had made the previous day.  This time we made 45 goodie bags so we would have enough for the surgery staff and for the nurses when I stayed the night.  I started with my friend, Pam, over in the imaging center.  She has been sweet from the start and I hadn't updated her on things and really wanted her to know I was going in for more surgery.  From there we went to admitting and then straight up to the now too familiar second floor surgery checkin desk.  I recognized the receptionist and she recognized me as I greeted her with a smile and a bag and she promised to send back my other favorite guy receptionist to see me when he came in at noon.  My dad, Greg, Brookie, Mike and Suzie and I settled in to tables far down the side at the end since they were close to recharging power and we knew we were in for a long stay.  I was only there for a short time before they took me back with Greg to the preop area where I was placed in bed two, the same as the first time.

For the next hour, nurses bustled about getting everything ready.  The nurse who came to start my IV recognized me questioning why I was back.  She has this great foreign accent and we had talked a bunch last time.  She was thrilled to get her goodie bag and I sent an extra for her two kids at home.  As the nurses worked, the doctors filtered in and out starting with Dr. Byrum and Melissa followed by Dr. Matt then two anesthesiologists.  Each left with a Kisses of Hope goodie bag and a smile promising not to get on a sugar high before surgery.  We thought we were ahead of scheduled, but it ended up that the surgery room wasn't ready so the wait started.  That was okay because it gave time for friends and family to filter in and out.  My friend Diane was the first to sneak back.  She had taken off work early to spend the day with Greg knowing he would need support through the long waiting period.  The receptionist I was waiting to see came back for his hug and I gave him a goodie bag and from then on, we were set for getting people back to see me.  He brought Brookie and my dad back.  Soon Preston made it just in time to spend some time there and Mike snuck back as well.  About 30 minutes behind schedule, we started as the anesthesiologist wheeled me away and I faded into a comfortable zone.  I barely remember the operating room and them positioning my arms before going under.

Unlike the first surgery, I never remember waking up in the recovery room.  My first memory is being wheeled out of recovery and then into a room with a clock above the door.  I was so confused because the clock said 11:30.  "What in the world could have possibly happened for it to be that late," was all I could think and ask about.  As Greg reported in his blog post, the tumor was what is called a borderline tumor.  Later we would learn a borderline tumor doesn't mean it may or many not be cancer, but rather it is an abnormal group of cells which make up a type of tumor.  It can almost be compared to DCIS in the breast in that it has not yet spread to deeper tissue or become full cancer.  However, without taking the additional pelvic and abdominal lymph nodes, there is no way of knowing if other types of ovarian cancers were present, so that is what the doctor did, which greatly extended the surgery time.

Quickly reviewing, I don't remember much more of Monday night other than I had no feeling in my first two fingers on my right hand and was scared my RSD had surfaced.  Tuesday morning, I was happy to eat a little and not so happy when they made me walk, but everything seemed to be coming along normal.  We knew I had to stay an extra night just because the surgery ended so late on Monday.   The position of my arms during the long surgery was being blamed for the numbness.  I guess they do the surgery with me tilted upside down which gets a lot of things out of the way when they are working laparoscopically.  Eight hours of my hands bent over affected the media nerve, which is the same nerve affected in carpo tunnel but they assured me my normal feeling would return.  My left had was tingly, but not completely asleep like my right, so that would good.

My recovery seemed to be progressing, so Wednesday morning Mike and Suzie headed home which left my dad, Greg, Brookie and Preston being my support team.  I had started becoming nauseated Tuesday night, but that is common after surgery and it was quickly relieved with meds.  By mid morning on Wednesday, I had no interest in eating or getting up and I went down hill faster than I could tell anyone.  I just felt awfully sick and the nausea meds weren't helping.  I remember my dad and Greg insisting I had to walk.  I had not passed gas yet, which I would learn is a pretty big deal after surgery.  I just knew I couldn't get up.  I wasn't hurting, I was just so sick to my stomach.  I got to the edge of the bed and couldn't speak although I knew I was going to throw up.   With my dad on my right and Greg I my left, I stood, and 15 seconds later I puked standing straight up, paused a minute, then did it again.  I knew it had hit the floor and splattered but nothing mattered at that moment.  My dad tried to make me feel better reminding me when he puked on me in the hospital once.  All I knew was I had some relief for the first time, but it was short-lived as it quickly built up again.

The next thing I remember is being wheeled to x-ray and returning to hear something about the x-ray showed my intestines and bowels having an ileus which basically meant having my bowels and intestines touched and moved around during surgery had put them in shock.  There was talk of this being a know side effect of abdominal surgery and that I could no longer eat or drink anything until we got the bowels out of this paralyzed state and awake and working, which included no more oral pain meds so I would have to go on morphine.  Then I remember Dr. Matt and Melissa both sitting on my bed and explaining they were going to put a tube down my throat to drain the bile in my stomach because if I kept puking, I risked getting pneumonia.  I guess they had cleared the room before talking to me.  I was loopy, sick and just wanted relief.  As quickly as possible, one of them inserted a NG tube into my nose, down my throat and into my stomach.  I just remember being there helpless as I puked around the tube as it went down, while crying and wetting myself all at the same time.  It didn't matter.  Immediately the tube filled with a horrid dark green vial substance that raced out like someone had turned on a hose.  The tube hurt in my throat, but I immediate felt relief.  They let me swish and spit then cleaned me up.  Sometime in the night, a nurse woke me, sprayed some numbing spray in my throat, and I threw up all over again around the tube.  I felt completely helpless laying there as the vial substance went everywhere.  I was a mess.  She was so sweet and somehow we made it into the bathroom to take an impromptu shower which I barely remember before returning to bed and resting for the night.

Thursday the hose in my nose was awful, but I could at least function.  I wasn't at all hungry and was told to walk as much as possible.  We would leave the room and walk the halls, one person on each side of me and someone following up from behind pushing the IV pole.  Thursday afternoon the good news from the pathology reports had arrived.  No other cancer had been found in my ovaries, tubes, or uterus and the pelvic and abdominal lymph nodes were clear of cancer as well.  Of the 31 axillary lymph nodes Dr. Byrum had taken, only one had a 1 mm tumor but the rest were all clean.  The news couldn't be greater!  It was gone.  All of the cancer that was inside of me had been cut out and the chances of there being more were much lower now.  I was happy to hear the news, but still focused on that task at hand, which was to get better.

By Friday Mike and Suzie had returned to help again and we were all working to get me to pass gas.  I was tired of this.  If walking was what it was going to take, walking it was going to be.  I got up every chance I had and walked as quickly as I could.  Everyone had trouble keeping up with me as they ran to roll the IV pole behind me, but I knew if I didn't go quickly, I wouldn't make many laps.  Each time I wanted 3 laps.  We had been keeping track of my laps around the hallways each day.  Every 12 feet there was a small foot sticker on the wall and by the end of the day, I had waked 22 laps or what worked out to be a mile and a half with no success of passing gas.

Saturday morning I woke feeling completely sick again and felt myself going down hill quickly once more.  Four laps was all I could make as pain had started to set in.  Had we walked too much?  By noon the doctors decided I needed a CAT scan to see what was going on.  They wheeled me down to x-ray once again but this time into the room with the large donut machine.  After passing through a time or two, I returned to my room followed shortly by Dr. Matt and Melissa.  They said the scan showed portion of my bowel had become knotted and they were going to have to take me back into surgery that day to fix it.  Dr. Matt explained that this time it could not be done laparoscopically but they were going to have to open me up.  I was disappointed because I knew that would greatly increase my recovery time.  We had worked so hard to do all of this laparoscopically so I could get over this and not delay the chemo treatment and now here we were.  But I knew things were becoming serious quickly and they needed to do what they needed to do.  Within the hour, both doctors had returned.  They had talked with Dr. Byrum and she didn't want me opened up.  She was coming in to assist and they were going to do the bowel repair laparoscopically.  I was relieved.

They quickly wheeled me down to the surgery preop area.  It was completely quiet and only one nurse was anywhere to be seen.  I told them to put me in preop bed 1 this time since 2 hadn't been so lucky these last two times.  Here I was facing a third surgery in five weeks.  Wow.  This was crazy.

The preop nurse was slow, quiet and super unfriendly so I was glad when the surgical nurse arrived.  He was a big burly guy with giant hands and a great attitude.  He reassured me he would be with me the whole time and take good care of me.  He immediately started pulling the tape off of my NG tube as it kept slipping down and started re-taping it explaining how these young nurses are getting out of school not knowing simple things like a chevron taping method.  In the distance I saw Dr. Byrum walk in and I waved.  She, Dr. Matt and Melissa came in shortly.  I begged them to take the tube out while I was under, but they said it had to stay in until morning when they could make sure everything was working.  It was like a ghost hospital with no activity as it was late Saturday afternoon.  Diane had made it down in time to stay with Greg again so I said bye to her, Mike & Suzie, Greg and my dad and I was off to my third surgery.

I don't remember anything from waking up Saturday night, but Sunday morning I felt like there was an electric fence inside of my body and it was shocking my entire left side.  That was the first true pain I remember feeling through all of this.  Dr. Matt and Melissa came in and explained they had put a permanent mesh inside of me, tacked it in place with permanent sutures, and that would keep my bowel from moving into the empty areas where the ovaries and tumor had been.  Basically, the tumor removal and hysterectomy had left some big empty space in my abdomen.  Somehow a knuckles worth of my bowel had raised up, skinnied it's way through an abdominal suture, and expanded in the big void in my abdomen cutting off bowel circulation.  Basically I had a bowel hernia.  Wow, really?  How complicated was this going to get.

Mike and Greg were eager to get me out of bed but I was sure my body was on fire and I couldn't move.  After a little pain medication, they managed to coax me out of bed and as I sat and then stood up, I was sure I was on fire.  I made one lap and then went back to bed.  Thank goodness by the next walk the pain had either subsided some or I had gotten more used to it.  They had taken the NG tube out Sunday morning and I began eating really for the first time in 8 days, other than the little bit of food I had Tuesday morning after surgery.  I had never eaten Italian Ice, but it was the best thing I have ever tasted followed by a Popsicle.  All day Sunday we waited anxiously for me to pass gas.  I knew it was my magical pass out of there.  Finally Sunday evening we all celebrated when I finally farted.  Then we started making tally marks of each fart and laughed at our new celebrated fart party.

Monday I continued to recover but still had not had a bowel movement.  They removed my IV's and I ate and drank in hopes of encouraging one but no luck.  We realized I hadn't urinated and an ultra sound revealed a huge build up of liquid inside my bladder.  They were going to have to put a catheter in to stimulate my bladder if I didn't go so with a little concentration and a lot of running water, I released what they could account for putting in me since the surgery and removing the catheter Sunday morning.  Discharge was planned for Tuesday so by Tuesday afternoon, I was packed up and ready to head home after an 8 day, two surgery hospital stay.

As Greg and Mike packed up what had become our temporary home, I realized just how much  support  we had had during our stay.  The room was covered in flowers and plants from visitors.  Besides Mike and Suzie being by our side, my dad spent every day hanging out in the room with me.  Brooklyn stayed most of the week and Preston and his girlfriend Yuri were at both surgeries and came time after time.  Our friend Jan came daily to keep my spirits up and check on Greg.  Our good friends Paul and Diane drove all the way across town day after day to support us and we had visits from our friends Bruce and Margaret as well as my Aunt Mary and my 99 year old grandma who came up twice throughout the week.  My sister-in-law Jan came one day to pick up Brookie and take her back to Safford so she could spend a few days packing to return to Idaho.  Even a young lady named Kelli who is dating Carson, Jan's stepson, had been following the blog and came to support Greg during the surgery and came back over on one of the bad nights when I was getting the NG tube inserted.  My cousin Jennifer was part of Greg's support group the day of surgery, our friend HL Case stopped to see us on his way through Mesa, and a good friend Mitch Callihan came to check in on us.  Besides the visitors there was support from afar through cards and flowers like from my Aunt Rita and Uncle George, my good friends Heidi and Troy, and a wonderful unexpected gift and card delivered by Rhonda Sears from teachers at the middle school.  Before leaving Safford, my friend Carol made me a fleece blanket with pink ribbons which became the talk of the hospital and my security blanket through all of this as I never let it leave my side other then in the OR.  People also kept in touch with Greg through texting like Carol, who passed updates on to everyone at work, my best friends Trina and Peggy, and our neighbors Gayrene and Kristi.  Thank goodness people were looking out for Greg especially when I wasn't allowed to eat.  Someone finally whisked him away to Texas Roadhouse and got something besides hospital food in him.  And I don't know what I would have done without my friend Suzie who would strip down with me in the bathroom to bathe me, wash my hair, and blow dry it giving me some semblance of feeling human.  When I had the NG tube in my nose, I looked awful.  I had on no makeup, my hair was a mess and I probably even smelled--a condition in which I have never let friends see me.  But having friends and family there to support us made none of that matter.   I can't tell you how important the love and support was.

We knew this surgery was going to be a challenge.  Having a hysterectomy alone is a big deal, but add to that what ended up being a 12 cm tumor removed,  pelvic and abdominal lymph node dissections,  an axillary lymph node dissection, and my port put in and top it off with a second emergency surgery for a herniated bowel.  Whew.  We are a long ways from the simple lumpectomy of a DCIS case we thought we were facing back in November.  What we've learned is nothing in this crazy stupid thing called cancer is predictable and you just never know.