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reconnective therapy

Sunday, January 27, 2013

I slept all day.  I feel dizzy and my head still aches. I’m trying to get off pain meds.  Don gave me a cold compress and that helped.   I’m leaking fluid constantly, a pale, pinkish fluid.  I’ve gone through a dozen pads in a couple of days.   Don’s going to have to buy me more, something no man likes to do.    But, mostly, I’m so tired and down.   Liz is coming over soon with Jenai and I hope that helps.    Maybe get reconnective therapy. I’m fixing dinner.  Collards and potatoes.  Spaghetti for Jenai, if she wants it.

Liz did the reconnective therapy and I felt better… but I still had to take a couple of Percocet in the evening and again at 4:00 am.  I ache and need to rest.

The surgery took away my independence at the same time it took away my uterus.

Saturday, January 26, 2013

My first day out of the house since returning home from the hospital turned out to be too much.  I went to meet with one of my writing groups.   I can’t drive so one member picked me up at my home and drove me to the meeting and another took me home.

The group usually meets for 2 hours but since we’re getting ready for the Virginia Festival of the Book, we met for 3.  Three hours is a lot even in the best of times, but these are the worst of times, for me at least.   My emotions are on the edge.  My pain is managed with drugs but I hate the side effects – rash, loss of sleep, headaches- and few of my clothes fit my still-bloated stomach.   I am afraid to put anything tight on, even a bra.   I wore sweat pants, a long sleeve turtleneck and an over shirt.  There was still snow on the ground so I had to be careful not to slip as I walked from my house to my friend’s car and from her car to the house where we meet.    We didn’t talk about my surgery because she gets squeamish about medical issues.  Rule one of being dependent: You don’t want the person driving to faint.

When we arrived, I still couldn’t talk about my situation.  Didn’t want anyone fainting.  They critiqued my story first.  I’d submitted the final two chapters of my novel.  I taped the conversation to make sure I got all their points.  I feel like I am finished with my book and that I’m starting all over again at the same time.   One member reminded me that it take 10,000 hours of doing anything to become proficient.  I’m sure I’ve spent 10,000 hours on this one book.

Next, we discuss another submission.  A short story about a marriage gone wrong.   We had a discussion about divorce and I sided with the guy. I don’t know why but I felt so alienated from the other three women.    I was asked if that meant the woman deserved what happened to her.  “No,” I said.  “But she went into the situation wanting money and that’s what she got out of it, so I don’t see the tragedy.” Later, we discussed plans for our Festival of the Book presentation and I fucked up again.  I got fussed at for not listening.

This was the first time Don had the house to himself since I came home from surgery so I didn’t want to  call him to come and get me.  He’s done so much for me; I wanted to give him this small gift of time.  But that meant I was dependent on someone else.

I’ve lost my freedom.  Until I am fully off narcotics AND have stomach muscles strong enough to slam on the brakes, I can’t drive.   Driving is the great equalizer in the United States.   Behind the wheel of these wonderful machines, we are all the same.   I am just as strong as a 300 pound body builder.  I am just as valuable as a 30 year old beauty queen.  I am just as  independent  as any other adult in America.  But I didn’t have my car.  The surgery took away my independence at the same time it took away my uterus.

How historically and culturally ironic.

I couldn’t just get up and go home.  I was trapped.   I was dependent.  I had to be nice.   I couldn’t be myself.

I still feel like crying. Here it is, 24 hours later and I’m still upset.  I have a headache and my skin is a mess.   Rashes everywhere.  I am so on the edge right now, it takes very little to plunge me into depression.

This is why I’m such a hermit in the first place. At home is the only place I can be myself.  The car allows me to venture out into the world when I’m up for it.

I am too sensitive, I know.  Little hurts bother me but I’ve had big hurts in my life, too, and they’ve trained me like a whipped dog to beware of feeling happy.  To beware of being dependent.

Chained Dog

Whipped and chained.

artificial euphoria

Friday, Jan. 25th

Running out of Percocet and I don’t like the side effects of the mega-dose of Ibuprofen, it makes my heart race.  Took it at 11:00 pm and couldn’t sleep.   I finally took my last dose of Percocet at 4:00 am and had a few hours of sleep.  Percocet relaxes me and gives me an artificial euphoria that keeps me going.   I can see why people become addicted to it.   It gives me the feeling that I used to obtain naturally through sex, yoga, a hot bath.   Three things I’ve had to give up because of my surgery.

Still on Percocet

Thursday, January 24, 2013

Sales people wanting me to buy a 2-year subscription to Discover Magazine call.  I tell them I have cancer and don’t know if I’ll live 2 years. (that’s a joke, you know).  They promise to take me off their call list.  We’ll see.

Writing group came by with dinner.  Such sweet girls.   I’m older than any of them.

heart shape by various vegetables and fruits

Thank you for bringing me dinner!

Still on Percocet. Makes me hyper emotional, mostly in a good way.   I love everyone but I’m also very sensitive.   Glad I don’t have to leave the house, don’t have to go to work or school.   Glad this happened after Mike was off to college and not when he still needed me to cook and drive for him.

Made an appointment to see a social worker at the Emily Couric center on Monday.   I told her I’m worried about spiraling into depression, especially after Don has to return to traveling for work.

stage 1, grade 3

Wednesday, January 23, 2013

I have so much food in the refrigerator and freezer.   And delicious food, at that!  Friends have brought me more food than I can describe here…. and Don is SOOOO grateful.  He was afraid he’d have to cook or go out to Whole Foods everyday!

He’s so funny.  Don hates Whole Foods.  I love it.  That pretty much defines the difference between us.  I love the market feel of Whole Foods.  The slow shopping and chatting.  I always see friends there.  Don wants to  get things done and get out of there.

My friend and neighbor Elizabeth Mandell came today  bringing lasagna, bread, salad and cookies.  She explained why I’m so puffy.  The surgeons pump CO2 gas into my abdomen so it puffs up like a tent.  That gives them room to maneuver the robot arms.

2013-01-21 11.32.25

Puffy and bruised.  

Dr. Cantrell called around 7:00 pm tonight.   She talked to Mark Stoler, the lab guy.   They didn’t find cancer in the lymph nodes!  That is great news. It means the cancer hasn’t spread.  My cancer is a stage 1, grade 3.   I’ll need radiation but not chemo.  Whew.  She also suggested I  undergo gene testing to figure out what caused cancer and to make sure I’m not susceptible to colon cancer.

All in all, it was a good day.

Considering all I had just gone through, I felt like crying.

Tuesday, January 22, 2013

I am home but my time at the hospital definitely had issues.   The main one was with a urine bag that wasn’t checked overnight and almost backed up  inside me.  Worst of all, the technician lied about it and said she checked it when I know she didn’t.

I decide to call Patient Relations and register a complaint.  I get a woman on the other end of the phone who clearly doesn’t want to talk with me.  She tells me to tell her what happened and  when I began, she interrupts me and asks if I could state it quicker!    I feel like hanging up!!  Here I am, just out of surgery, just out of the cancer ward, and some receptionist at Patients Relations – of all places – is being rude to me.

The range of care at hospitals is just too much.   Some are angels of mercy, and others act like cashiers at Food Lion.  And some aren’t even that good.  UVA has GOT to hire better people at Patient Relations!  Considering all I had just gone through, I felt like crying. Crying statue

The good news is that Yesterday, Delna and Pam visited me.  Today Natalie, Judy, Trish and Delna are visiting.  I have good friends.

“Are you here for surgery?”

January 20, 2013

I arrived at the UVA Surgical waiting room on Saturday at 6:00 a.m.  No one was at the desk.  No one was at the information desk, either.   Only one person was in the room, another woman.   A few minutes later, another couple arrive.images

“Are you here for surgery?”

“Yes.”

“Isn’t this where we’re supposed to meet?”

“I think so.”

I begin to pick up a magazine then stop.  This is a hospital waiting room, it’s probably covered with germs.   My mood is getting worse.  This isn’t a good sign.   Is anybody ready for us?

An older, heavy-set woman arrives and switches on the lights to the front desk.  She’s friendly and asks our names and takes us up to pre-op.

Don and I go to a room, the other ladies go to other rooms next to mine, even though their surgeries are very different from mine.  One is having knee surgery, I don’t know what the other is having.

Nurses begin to stream in asking the usual. Name, date of birth.  We hand them the blood bands I’d received earlier when I had my blood checked.   I don’t have to give any more blood, I hope.

I change into a hospital gown and try to settle my nerves with a few yoga stretches.   Don took photos.  I look awful.

Someone comes in and tells me to get on the bed and hooks me up with the heater that’s like a hair dryer.  I am warm.  More people come in and ask more questions.  Dr. Cantrell comes in and we discuss lymph nodes and such.  The anesthesiologist comes in and I tell her that last time (when I had the cone biopsy) my throat hurt for days.   She explains that it’s because of the shape of my face (my little chin) that the tube sometimes presses against something.  I don’t really understand.  I just don’t want a sore throat.

Male nurses arrive.  One for the operating room, one is the nurse anesthetist.  Both are kind and competent and help me relax.

Another nurse comes in and starts my IV in my left hand (she numbs my hand with lidacaine first) and another comes in and gives me a stinging shot to my stomach with something that supposed to thin my blood and make clotting less likely.

 

Don is with me the whole time.  Watching, holding my hand, calming me.

The nurse anesthetist comes in and says he’s going to give me something and it will probably be the last thing I remember.  He was right.  I don’t remember going into the operating room.    I’m glad.  These are scary sights.

 

I can’t remember post-op.  I guess I was there then wheeled to the ward.   I can’t remember when I first saw Don and Liz.  Don says he was told to go to ward 8West, room, 172.   I was there.      All I remember is being happy they were there and happy my surgery was over.   I felt so vulnerable but I felt safe with so many people who loved me around me.

I drank cups and cups of warm chamomile tea (Allegro’s Peaceful Slumber – a post surgery must).  I didn’t have a sore throat.  Didn’t have the coughing of previous anesthetist events.   I talked with Liz while Don went home to take care of Jelly.  Delna arrived and the three of us talked for the longest time.  I can’t remember what I talked about.

I didn’t hurt but when I looked down at my stomach, I was shocked.  It was so bloated and had 5 slices in it.   Each slice about an inch long. I thought it would be 2 slices, not five.   And I didn’t realize it would puff up so much.

My day nurse, Susan, and my PCA (petty cute assistant) Brad, were great.  They brought me what I needed and help Liz and Delna.

Liz and Delna left sometime in the late afternoon and my nurse Susan left around 7:00 pm.  We turned off the lights and tried to sleep.  Don was in the chair next to me.  The woman in the bed next to mine (I was in a double room on the oncology ward) had her privacy curtain closed and the TV station tuned to MTV.   It was on the entire time, whether she was asleep or awake.   I could hear her snore and the TV was still on.   She was a sad story.  Young, probably in her 20’s, African American, very small, with tubes running into her.  She didn’t have a catheter like I had because I could hear when she used a bedpan.   But otherwise, she never got out of bed.    I didn’t know what she had, why she was there, until a doctor showed up to speak with her and talked to her about her “Sickle Attack” so I assume she has sickle cell anemia.   I could hear the doctor ask if her pain pump was working, was it managing her pain.

 

Good news:  fence is fixed.