Monday, July 27, 2009

Part 4-Leaving where I was behind

My birthday was the next day and I was greeted by balloons at my desk, a coffee mug, a card and streamers. I took pictures and I looked awful. I never felt so happy to have a birthday,it would be later when I grasped with the reality of what could have been that I realized the birthday was a bit of a miracle.

Then a weekend and time spent building myself up to work an 8 hour day,5 hours then increasing to 6 hours. I never did the 7 hour day. I decided I should get up and be ready to go at 7:30 just like normal.The first day of that experiment a hard rain fell and I just layed in bed and drug myself to work about 10.

That first weekend I kept a promise to myself that I made when a co worker was kind enough to want to drive me around the lake on a nice evening in April. Watching the walkers I realized I wanted to do that. I needed to .When I left the hospital I was given drug instructions, drainage instructions but not recovery instructions.I was on my own for that.The old joke applies "Doc, will I be able to play the violin afterwards",
"I don't see why not" the doctor replies
"Great I never could before"

I walked at the lake, I didn't go far but I did it,I didn't get to on Sunday and only 1 that next week, but my heart was in it. I was tired and felt great.Walking aways and stopping to look at the lake. I also established a goal, time and distance didn't matter but I knew I wanted to walk across the dam. By the time I returned to work, I knew I wanted to work with the girls on break. That kinda replaced the Lake although I still have gotten out there.I did walk the dam in late June before heat and rain kept me out. I tried Yoga ,but that and the walking was too much. I want to do something with Yoga but I don't know what or where. A gym is probably out of the question for now.

One last medical issue, the stint, it was either coming out naturally or the digestive specialist would take it out.I made an appointment based on work for early July,after the 4th.The procedure was short and this time I felt the sensation of the room spinning around before falling asleep. The doctor said "This was the last chapter of a very long,painful road for you." In fact I got the stint as a gift, I want to turn it into a paperweight.Looking at it that day it became a symbol of survival,recovery,the balloons and flowers I got are long gone, I should have taken a picture but didn't. The cards are in a box,except Mel's card which is at work. The Card from Nancy Sinatra is on the table where ,next to the lap top. The Sinatra discs are duly organized, the Copy of "nothing but the best" I bought next to the one I was given.

I walk when I can at home, am waiting for cooler temperature to return to the lake. I feel better than I have in 10 years.I returned to traveling the state, a passion I developed last summer. The weight returned slowly,but I'm happy with it. Work has not been tiring.I do wonder who is in room 720 of Stormont Vail, and the nurses who were so good. I need to drink the energy shakes even though they taste like crap.

My mother ended up with the same doctor who removed the stint for her colosophy and he confirmed what bad shape I was in, the right lung had almost collapsed, that was new information.

Survivor,Recovery,Miracle I don't know. I havn't listened to the Grateful Dead in several years and one day just wanted to get a CD by them and yes it's " lately it occurs to me what a long strange trip it's been."

Home

When I got home,I remember sitting in the chair in front of the TV,looking at my books,desk,lamps and how strange they seemed from the universe I had been in,but it was all there ,all mine, it was my world and my fate was in my hands. I am a little blurry on the first few days, I still had stitches in me. I was so thankful for my sleep comfort bed that I could adjust as I wished, and believe the first few weeks I slept in some positions I could have imagined.

I missed walking, I was grateful to co workers who paid for a meal. I was so happy my mother didn't have to cook,at least for one night. Of course the first thing I wanted to do was get back online and report back I was home. Several pages on the Sinatra forum talked about me and my progress as Mary had faithfully recorded. I wrote simply "I'm home and tired , more later." then I read the backlog on the thread and came to Nancy Sinatra post minutes after I wrote I was home "Thank Godness" it said with an angel avatar.Several people said the place "Moonlight Sinatra" for me the day of the surgery.

Things to conquer in the coming weeks
-walking downstairs with stitches inside of me. That was easy , sheer will.
-going to the store, I went to Wal Mart and drove one of the carts, that was surreal.Everything I wanted seem to be on the upper shelf. Thank God for the charts and those who need them on a daily basis.
- my step father has a walk in shower and I went there several times in the 7 weeks I was off, it was there I got a first look at the scare that begins just under my belly button,curves to the right of the button and continues up my mid section to the sternum. and the stitches.

Every activity the first weeks tired me out, the first trip to the doctor where I believe the stitches were removed maybe the second visit. I was thin, at the hospital I swear I weighed 150 something once. I was horribly thin, I knew that. Clothes hung off of me. I do know it was the first doctors visit , we were in the waiting room and a woman smiled at me, she had bags under her eyes and wore PJ bottoms, I knew she was a patient and the smile reflected "I'm happy to be alive, how are you ?"

There was still the issue of the drains, one needed to be emptied every 4 hours or so,the other less so. I was told to squeeze them so they got suction. An appointment was made for early April to have it checked,I'd go to sleep again and the whole thing took 10 minutes or so. I was taken to the same room as before and the table was not 100 feet in the air surprising enough. I was shocked it was same room. This doctor,different then the surgeon told me not to suction the drainage bottle. The difference in the amount was dramatic. as the every 4 hours turned into maybe once a day, I knew I'd be going back to work.

Driving was not a problem, but my first outing did tire me, Wal mart, the mall.walking around with the drains tucked into my shirt. I loved how wet and rainy it was, laying in bed listening to the rain.

After 10 days,Mom went home, I had to do this on my own, I had to drive over there to get the shower.It was 6 weeks before I went to work, what did I do ? watched TV, I should have kept a list of the movies I watched ,either buying or on TCM, It probably goes into the 30's or so.

One day a FedEx trucked pulled up, a package had been forwarded from the hospital. The address was boots enterprises,Beverly Hills CA. I opened it and found a nice card from Nancy Sinatra, signed "Feel Better-Love,Nancy" and a CD, the most recent Frank Sinatra "Nothing but the best". I already had it, but not as a gift from the daughter of the artist. Priceless.

Finances-
I knew early on I'd be eligible for Family Leave Act, that would keep my insurance going, the question was would my request for Shared Leave be approved. When Leslie (supervisor) came to visit in the hospital she brought the form and agreed to fax it to the doctor to fill out. About a week after I got home , I found out it was denied. I knew I probably won't return until the end of April. I was horrified and asked our HR directer for numbers of someone downtown .This was just plain wrong. The person was in a conference and returned the call the next day.

The surgeon had not mentioned the Gallbladder at all, I was still weak in voice and emotionally down as I explained everything that happened from the Er visit to the surgery to the drains and very emotional . Hours later I got a call from HR that it had been approved. Shared leave is where people donate sick leave hours, this can be donated from anywhere in the state,any state employee, the reaction was quick , enough had been donated to cover me into May. All for my state agency. They did not need to use any for other agencies. I'll never know who did it,I don't want to know, but I think in the scale of me getting better I shot up about a thousand percent that day.

The drains came out in late April, I could stand up straight and not be burdened,It would time to go to work. I took a week for myself and returned on April 30th, for 4 hours. Good I was tired and lay in reading .

Part 2 : And we got there

a friend of my mothers arrived when I was in prep, I don't know how long she stayed, I was eventually wheeled into the Operating room.I was given an epidural for the pain, as a result I got to look at the Operating Room and I said to the Nurse, "This doesn't look like Grey's Anatomy", she laughed. When the epidural was given to me, I lay on the table and I really don't even recall the room spinning before you go to sleep.



What I knew before hand was I would wake up in ICU. The room was dark, I remember doing nothing but groan and needing water, they used a sponge and dabbed my mouth.Many.Many times, the room was so dark I didn't even see outlines, I just heard voices. A Male and maybe a Female. I slept again and again and had no knowledge of time.That water dabbed in my mouth was amazing to me, In the dark ,It was delivered by no less than Angels.



Sometime Wednesday morning I was delivered to the room where I would spend the the next 7 days, 8 days total counting the surgery. I remember reading Gilda Radner write about Cancer and how she lost days when she went into Chemo. So she didn't even know Jackie Gleason Died when she had a treatment. I guess Medicine has advanced people today get the Chemo and play golf.



This is when I found out when they were inside me they found out my gallbladder was either the size of a Baseball or the surgeons fist and it was removed as well. That proved to be the real recovery. As I thought in the month afterwards I realized that was why I couldn't eat the Pizza and why I got so sick. In short it later occurred to me I was in the beginning stages of death.Honestly that no exaggeration.It was very real. In the room I discovered I had 4 drains going,one on my left side, one in my penis and 2 on the right side. The amounts of drainage were recorded every 4 hours.



Things progressed from liquid,water only to pop to solid food quickly. The time before Friday is hazy to me. The head of our Division came by on Wednesday, but I really don't recall it. I think I talked on the phone to my supervisor on Thursday, she would visit me on Friday with 2 co workers. The flowers arrived on Thursday, that was a surprise, Erin and Tiffany sent them. I worked on political campaigns with them and recently reconnected over facebook.



I had given my mother 2 numbers to call, one was my supervisor and the other a lady in North Carolina who would update my Frank Sinatra message board group on my progress. I'd get a couple of cards from Group members.One on Friday, brought me to tears.



A lady from South Carolina about 3 weeks earlier had Breast cancer surgery. I remembered the day before asking on the message board if she had a favorite album and suggesting everyone play it the day of the surgery.She returned the favor with a similar request. I asked for "Moonlight Sinatra" to be played for me. Anyway, still in recovery at home she found the time and energy to send me a card, I started crying right there on the bed, and said if that doesn't get right here, nothing will. The Card and envelope with the Sinatra Stamp proud resides at my desk at work.



Much of the time is hazy to me. Here are vinettes of what I remember:

-I was a little upset at the nurses when during the visit from co workers they came right in and emptied the drains. On Monday an older nurse asked a visitor to leave when I was drained.



-The nurses decided to remove the urine drain in the middle of the night. It hurt a bit , the male nurse said "Yeah" in sympathy when he did it. The surgeon seemed to wonder why it was done in the middle of the night. Simple I had that brief moment of pain and went back to sleep.That actually was good thinking.



-Nurses and visitors got on for not watching the NCAA tournament, I wasn't interested ,not a KU fan or a big college basketball fan.



-The dry erase board, It had the date and name of the nurses for the shift. I loved the ones who updated it.You really do lose sense of time and in a way that helps with your sanity.



-outside my window on the 7th floor,I could watch birds flying around and marveled for hours and hours one windy day watching them take off and land. I know that sounds like a Ted Baxter heart attack episode moment, but it was really beautiful. Also in the distance was a white house that popped up over cherry trees. We never did find it, that is still a project I have. I think it's ward meade but I'm not sure.



-watching an old Alfred Hitchcock movie "Shadow of a doubt", I'd never seen it before and it's a great movie. Hitch would say it was his best. For 2 hours that morning I was not bothered and it was amazing. What a movie. Joseph Cotten is so evil in that movie.


-I'd never been so drugged before.I went to the X-Ray wing where a stint was placed inside me to help with the drainage. It happened suddenly early in the morning and I was so drugged that when I was wheeled into the room, I was told to step on the table and they would lower it if needed. It literally seemed to me to be 100 feet high. The next day the doctor who preformed the procedure came in and started talking to me. I had no idea who he was.

- It was a blast watching clouds and I looked forward to watching the lights come on the grain elevators that I could see in the distance.

on the 8th I went home.a tube stuck out of my left side and 2 drains connected to my right, I was given instructions to drain them every 4 hours and write down the results.

The one thing I do want to talk about and my biggest memory was walking, was it Friday or Saturday when they asked me to walk. I made it 10 feet and looked out a window, when I got back I felt I ran a marathon. The second walk was maybe 15 feet in the other direction. When I returned I was exhilarated. More so as I made to the end of the hall. Then around the old nurses station in the center of the floor, then 2 laps. I became irritated when a walk was delayed by an hour due to an IV. Each walk was a personal triumph for me. I was just existing until that point then I was living again and recovering.

Friday, June 19, 2009

Part 1: How we got to where we went

I can vividly recall the moment. 2000,I was at work walking down a hall way and felt out of sorts.Dizzy, heart pounding. I thought I'd never get back to my cubicle. From what a co worker had described, It seemed pretty close to a heart attack. As the described in Mad Men, "I feel like a Sherman Tank parked on my chest." It wasn't that bad ,but I wondered it was soon to get that way.



I made a doctors appointment, tests were run and the verdict was a haital hernia. Ok, now what I wondered. Quick glances at the internet told me , It was not uncommon for women who just had babies to get haital hernias. That made sense. The hernia part certainly made sense to me, days earlier I had been involved in a massive moving project, a lot of heavy lifting, I did what I could and maybe over did it.



Flash foward to January 2008. In the meantime I had a couple of ear surgery, dental work, nothing major.As 40 approached in 2005, I was well aware I was not as young as I once was. In January of 2008, on a Sunday late morning, I felt dizzy,couldn't eat, and some discomfort. The main thing was numbness that wouldn't go away. I was thinking and wondering stroke. I called the On Call Nurse at Cotton -Oneil ,who sugggested as a precaution to go to the ER.After XRays and a CAT scan,It was diagnosed as a possible TIA, a Near Stroke.



I saw my physician the next day who arranged for stress tests, MRI and suggested "Sometimes they say TIA as a warning". Any test I took came up negative. For the MRI, I finally had to be put to sleep, 3rd time was a charm. In talking to co workers It seemed likely it was not a TIA,It could have been anything from a bug,virius, over eating from the holidays , who knows what it was.Migrane was not out of the question either



Everything was ok through September of 2008 when similar symptoms occured, this time at my mothers urging and a rapid heart beat. My heart was beating out of my chest, I went by ambulance to the ER. Blood pressure was through the roof.I don't recall the numbers but it was pretty damn high, possibly dangerous. It went down once I was in the ER.



Frankly the scariest moment at the ER was when a doctor came in and asked something like "how long have you had diabetes ?" Obviously the wrong door. I could make some comments about the medicial mess, but won't. I went home , felt fairly miserable due in large part to job stress. In October I switched units and everything seemed to have disappeared , I felt better, except on weekend. The new job was somewhat active which was good. I never felt good enough but for one or two weekends to do anything,but it was nothing long term.

It was also about this time,between the first and second ER visits I began to chance eating habits,never quite reaching the need to exercise. Fall and Winter came and went, I was aware of what food would cause acid reflux and usually avoided it, learned to eat slower, not as much and everything was fine.

I remember one of the good weekends driving out in the country to the Oregon Trail walking center and thinking I'd walk up a hill, It about killed me, I had to sit on the side of the hill for a while before returning to the car.

One weekend in March, I ordered a Pizza, ate about a peice and a half and went to bed very early. The next day I planned on seeing "Watchmen" but never got there, going to the 1 showing didn't happen, the 4 showing , then plans on Sunday feel apart. I just stayed home, out of it, no energy whatever so ever.

On Monday I called in sick , and on Tuesday , about 10 O'Clock went back to the emergency room, panic attacks,accelerated heart beat, numbness. They X-Ray'd me and I was told me organs were not were they were suppose to be, and appointment was made with a surgeon for Friday. I didn't return to work and slowly grasped the concept I would be operated on, out of work for a while and very little idea of what was to come.

Friday- the appointment was at Noon or so, the wait seemed to be very long, the first thing the surgeon said was "Have you seen the X-Ray , your in bad shape". He then drew a picture of what was happening , a lot of internal organs were pushing into my right lung. I believe he would have opened me up there if he could. I know they tried to get an OR for Monday, but it ended up on Tuesday, St Patrick's day. The weekend was a blur to me. I realized I needed prayers and told everyone I could. I was also horribly depressed and was begging people on facebook ,the SFF and everyone I else I knew to pray,send cards and do whatever. I have friends who are Wiccan, I asked for candles, I have friends who follow Native American Faith who did things asking for the Great Spirit ,or whomever to show me divide guidance.Christians prayed.

I slept a lot that weekend,I don't really remember much. Monday came and went and Tuesday arrived and my mother picked me and went to the hospital with me.