The Hospitalization - Visitors

Having a mastectomy is not like giving birth, where everybody wants to drop by, give you flowers and coo over your new baby.

It's hard to coo over the loss of a breast.

I knew I'd be in the hospital at the most two days, so I'd made sure in advance to let people know I didn't want visitors. 

But that doesn't mean nobody dropped by.  A whole cadre of concerned people stopped in to see how I was doing, including the breast navigation people, a social worker and a chaplain, all to help me deal with my loss.

Last time I was hospitalized I had my appendix out.  Nobody arrived to help me deal with that loss, which is a serious oversight if you ask me.  I liked my appendix.  As a kid,  I'd been told if I ate sunflower seed shells they'd get stuck in my appendix.  It didn't stop me from crunching the shells,  and I loved imagining that poor little organ looking like a porcupine with all those shells jabbed into it. I'd also been told if you swallowed gum it would get in your appendix and stay in your body the rest of your life.  Naturally, I swallowed all my favorite pieces of gum.  So, having an appendectomy was quite a loss, knowing I was losing that juicy fruit I'd enjoyed back in 1964.  But,  where was the chaplain then?  No wonder I'm an athiest.

Anyway, my first visitor was the breast navigation people, who carried two bags of goodies, along  with profuse apologies for standing me up at my pre-mastectomy appointment.  I got a card with an apology, a plant, and not one, but two mastectomy camisoles, so all is forgiven.  They also give you some very helpful things to have in the hospital and recovery - a water bottle, lifesavers, chapstick, men's wifebeaters (so you can pin your drains to them and not worry about ruining your clothes) and many other helpful items.  Aside from my bumpy start with them, they do try to help women and the items were useful.

Next came a social worker, who asked me if my husband was going to beat me when I got home (nurses asked that too), whether I had a history of depression (I have a history of optimism) and how I felt about losing my breast.  (Um, fine?)  I actually told her that I'm the kind of person who accepts what is and I'm not one for looking back and I'll move on just fine.

Which is true. 

She gave me a bunch of pamphlets about mastectomy after-care and exercises to regain movement, some information on where to get wigs, a large pamphlet on chemotherapy side-effects,  and some support group information.  I'm not exactly the support group kind but I thanked her for all the information, and she was on her way.

Next, came the chaplain.  In your pre-op paperwork they ask you your religion and whether you want chaplaincy care (or whatever it's called). Naturally, I said it was unnecessary, so I was a little surprised to see her walk in.  She asked me if I was in need of her kind of support, and I said no, I was fine, thank you.  She was very pleasant and said she was just checking in, not selling, which made me laugh/ouch!  She wished me luck and went on her way.

But, my very favorite visitor was surgeon Rockstar Raja, because he is the guy who is going to send me home.  I confess to lying a bit about how I felt. I was ready to get out of there so I told him my pain control was about a 5.  (Never got that low).  I didn't think my insurance was going to pay for an extra day anyway, since I had no signs of infection or other complications, but I wasn't going to take a chance that pain counted towards keeping you in.  No matter how bad I felt, it would be better to feel bad at home where somebody can hand me water (and imitrex)  if I needed it.

So, I said I was ready, I was fine, and he signed the orders.

I'm going home.

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The Hospitalization - Nurses

I woke up to a ruckus.  The anesthesiologist was saying, "What is that; did she have that before?"  I looked to where he had indicated, and saw hives all over my left arm.  Somebody said, "No, she didn't, what could have caused it?"    The doctor said he had no idea and gave orders to give me IV benedryl.  I watched, like magic, as the hives faded before my eyes. 

I faded along with them.

Apparently, I was in recovery for more than two hours, but I remember none of it.   My husband was allowed to see me briefly, but they quickly shooed him out.

Suddenly, it's 8:30 and they are wheeling me into my hospital room.

One second, I'm asleep and the next second, I'm wide awake. And, the next second - I'm annoyed.

I knew it.  I knew I'd get a TV addict roommate.  Not only was the TV on 24/7 during her entire stay,  but it was tuned to the home shopping network.

Why, oh why, had I not bought that TV jammer I'd promised myself?  Can anybody really heal while watching a chipper southern woman discuss overpriced face cream for hours straight?

I just know my roomie is going to turn on Dr. Phil next.  I just know it.


My nurse came in, took my vitals and wrote her name down on the board.

Clementine.

Pretty name, so sweet!  My darling Clementine, going to take such good care of me.

Here is where writing this blog gets hard.  I so want to write something nice about the nursing care I received.  I want to write heroic words about hard-working, caring people who do a tough job for the benefit of their fellow man.  I want to extol the virtues of the Florence Nightingales' in our midst, the selfless nurses who bring us medicines, prop our pillows, and want to alleviate our pain.

I can't.   With one exception, my nurses were uncaring, unconcerned and in Clementine's case, downright neglectful.   Maybe they are overworked and tired.  Maybe they have no time to do any caring for patients anymore, other than taking vitals.   I only saw RNs, not LVNs, so maybe they are spread so thin, the minor things are left undone.  Maybe hospitals don't hire LVNs to take the load off RNs anymore.  I don't know what the reasons for my experience were - I only know my experience.

Which was bad.

Whatever is going on,whatever the reasons for the lack of care,  they should, at least, give the correct medication though, don't you think?

Now, remember, along with a mastectomy, I had an "expander" placed so I can have breast reconstruction later.  Placing the expander requires that the surgeon cut a pocket into my chest muscles to put this large balloon device underneath.  It will be filled with saline every few weeks until the skin and muscle is stretched to the proper size, and will eventually be replaced with a silicone implant so I'll appear to have a breast.  Because I have cancer, they put this in the muscle so that any future cancer can be monitored.

Right now,  move one of your arms. Do anything.  Pick up a glass of water, scratch your eye.  Notice your chest muscles moving?  You can imagine how great that feels after you've had it cut open and a big plastic balloon placed inside.  Frankly, I was pretty much immobilized on the right side.  And, in quite a bit of pain.  Mastectomy alone isn't that bad.  Mastectomy with expander is a different story.

Back to my darling Clementine.

She'd dourly introduced herself, put her name down.  Never smiled.  I asked her if she would hand me my contact lenses, which were out of reach.  (I'm completely blind without them and you know how much I wanted to see that TV.)  She handed them to me and stood back watching.  At this point, I was nearly flat on my back.   I opened up the case, and grabbed one.  I figured that she would prop me up or move my bed or something to get me in a better position to put them in, but she just stood there, arms crossed.  Watching.  No impulse to help whatsoever.

After wearing contacts for 40 years, I have always said I can put them on anywhere and I proved that.  I put them on in a hospital bed, with my chest muscles cut open, flat on my back.

I won't make a narrative about the rest of my experience with Darling Clementine.  I'll just recap.

I was allowed morphine every three hours, up to 6 milligrams at a time, at first starting with two and then increasing by two up to six until I got relief.  If I had breakthrough pain, I was allowed norco.  I was also allowed imitrex for migraine, (which with I have suffered for many years.)  I was allowed a sleeping pill.

I didn't find out what I was allowed until the next day however - and Clementine never volunteered the information.

She would not give me the norco.  Period.  Never told me I could have it.    I was in serious pain by the time the three hours was up and everybody knows it's important to get pain control early so you can get "above" it.  I asked for help, but she would not give me the morphine even five minutes before time.

She interpreted the orders for the increasing dosages not to be all at once, but every three  hours.  So, she gave me 2 mgs of morphine at 8:30, then when it didn't work, I couldn't have more until 11:30 when she would give me 4 mg, and then 2:30 I could have the 6 mg.  (Another nurse told  me that was a wrong interpretation of the orders, it should have been 2 then 2 then 2 right away, up to six.  Then 6 mg every three hours from then on.) 

Naturally, I got a migraine and started feeling nauseated.  I did not want to vomit with fresh stitches so I asked for imitrex.  She came back with two pills.  I asked her, "Is this Imitrex?"  She said yes.  But it was blue, imitrex isn't blue.  I asked, "Are you sure?" and looked closer. Annoyed, she said she was sure.  But, it wasn't imitrex, it was fioricet.  I looked up, said "this is fioricet."  I've been taking fioricet for 22 years, so I recognize it.  She just shrugged,  "Do you want it or not?"   I took it, thinking maybe it would help until she got me the imitrex,  and then asked for the right medication - and she refused!

There is no interaction between fioricet and imitrex as I well know, having taken them together for years.  There was nothing in the orders saying I couldn't have them together. 

But, she wouldn't make another trip.  No migraine relief for me.

She watched me as I vomited over and over.  No hand-holding, no pulling my hair out of the way, no helping to support my back, and no getting the medication that I was allowed to have to help it.  She did at least hand me the bucket to puke in.

Later, I asked for the sleeping pill she told me I was allowed to have, thinking being knocked out couldn't hurt - but it never arrived.

I think my darling Clementine was a sadist.

At 6:30 a.m, she removed my catheter.  However, she wrote down that she gave me morphine instead.  So, when my new nurse came in at 7:30 and I requested my morphine (it had been more then 3 hours) she said no, that I had just gotten it, Clementine had documented it.   It took some doing to convince her that Clementine had not given me medication, but when she saw the catheter was out and there was no mention of it documented, she relented and gave me my meds.  

This nurse, Becky was ten times better than Clementine - but that's not saying much.

At one point later that afternoon, my migraine got bad again. (I eased it myself by somehow managing to get my purse and finding one I had in there.)   So, I asked her for it.  She said she was going to have to call the doctor (no idea why).  I was barely hanging on by then - the pain in my chest was excruciating but the pain in my head was worse.   At 6:00 pm, Becky came in and cheerily said that she'd confirmed the orders for Imitrex and I saw she had it in her hand.  She said she'd be right back.

At 7:00 pm, I began vomiting again.  I couldn't reach the bucket, I couldn't reach the call button.  I just was puking and crying.  I began wailing, like a four year old who lost her teddy bear.  After 30 minutes, I could hear nurses talking out in the hall about how I was emotional because I was tired and hadn't eaten.

No, you MORONs, I was in pain and not getting treatment!  My pain had not gotten under a 10.  At 7:30, Becky came in with a hangdog look on her face and gave me the imitrex injection - in my muscle.  It's supposed to be a subcutaneous injection.  I've given one to myself thousands of times.  Without training.  But she couldn't do it right.

Now, before you think I was the only one who lost control due to pain on that floor, and that I'm some sort of wimp, let me tell you, that wasn't the case.  My roommate also didn't get her needed pain meds in a timely manner.  She got on the phone and called her husband and started crying and whimpering, louder and louder until the entire hall could hear:   'I want to go home, I want to go home, take me home."  Over and over she said that.  Later, a woman across the hall was screaming in pain.  Literally for hours.  So much so that people were asking if she was in labor. The nurses would talk about her outside but not go in and help her.

What they did was close her door to try and drown the noise out.

Here's what really surprised me.  Not only do they not bring you what you request when you ask, if you don't ask you never see a nurse.  They check your vitals at the beginning of the shift and that's it.  If you don't call for them, they don't come.  If you want your meds, you have to keep track and ask at the right time. They never check on you.   If you need to go to the bathroom, you have to call.  Forget getting a pillow fluffed or a light turned off unless you ask.  And, then they are annoyed because you bothered them over something minor.

You don't want to bother them over something minor like that - you figure you'll ask when they check on you.  But, they don't check on you.  So, you have to call or deal.

The one bright spot in this was Dana.  Imagine an angel with a shining glow.  Imagine your old-fashioned idea of what a nurse is and does.  Imagine Forence Nightengale.  That was Dana.  She helped me bathe, she was kind, she fluffed pillows.  She turned off the light behind me so I didn't have to sleep with it on two nights in a row.   You could ask her for help and she would help without getting annoyed.  In fact, I was so traumatized by my experience with Clementine that I asked Dana to find out if she was working that night.  If she was, I was leaving, period.  Without doctors approval - I could suffer at home.  Fortunately, Dana did find out and Clementine was off that night.

Dana was everything you imagine a nurse should be.  You know why?  Dana was a student nurse.  She was a former schoolteacher who decided on a different career path.  I think maybe I was her first ever patient.  And, I loved her.  She was the only thing that kept me there.

She was my knight in shining armor and whoever is teaching her - you can't pass her fast enough.

Maybe after ten years as a nurse, she'll become jaded.  Maybe the screams and cries of patients in pain will just become background noise, like the TV was for my roomie.  Maybe she will be so overwhelmed with other work/or more interested in chatting with her coworkers that she, too,  will skip giving a patient needed medication.

I hope not. I hope Dana ends up being the kind of nurse she demonstrated she can be, and the kind of nurse that in a perfect world, everybody would be and have.

I know one thing.  She'll never be as bad as Clementine. 

Dreadful. Sorry.  Clementine.

.

The Hospitalization - Surgery

Back to my waiting room, and more fussing with Nurse McGravity.  Again, I said my name, my birthdate and what surgery I was having.  I was doing okay but my husband was getting nervous.  I could tell because he was making dumb jokes about the computer system in between grimaces. 

Dr. Raja came by, looking all rock star and everything.  He is clearly well-liked.  He was patting people on the shoulder and people were preening for him.  He came over and warmly said hello, and then took out his medical sharpie and in true rock star fashion - autographed my breast.

I felt so groupie-like.

Then came a flurry of paperwork.  I had to give my husband the power to decide what to do with me if something went wrong, and then sign a zillion things that I had no time to read, and probably didn't want to anyway.  

I do remember having to put my little initials into hand-drawn bubbles in every spot where the word "right" appeared.  Right mastectomy, AS.  Right sentinal node biopsy.  A.S.  Right axillary dissection.  A.S.  Right tissue expander.  A.S.  I did that in quadruplicate on numerous pages.

Really, how often do they cut off the wrong body part to have to force people to say their names, birthdays, surgeries to everyone they meet, to force the doctors to put their initials on said body part, and then have you sign numerous forms confirming what is to be cut off?  Is it really that big a problem?

I'm guessing no.  I'm guessing one drunk or stupid doctor cut somebody's right kidney out when it was supposed to be the left 15 years ago, that hospital got hit with a multi-million dollar malpractice suit, and now every hospital in the country forces their patients to go through this rigamorole.

Damn lawyers.

In comes the anesthesiologist, and I recognized him right away.   A year ago, in August, I had an appendectomy, and this was the guy who put me under back then.  That was my first surgery ever, and all I remember being concerned about back then was that I not get a scar.

And, I didn't.  Is that irony?

Anyway, the Drug Doctor and I chatted a bit back then - that had been an unplanned surgery so he had to be sure I hadn't eaten, etc.  He found out I worked in a school and told me his wife was an art student hoping to become a teacher.  I told him how hard those jobs were to come by.

So, this time he had that file and looked at it and said, "Oh, I've seen you before." and I said, "Yep, your wife was looking for a job."  He said, that yes, and she had gotten one and "I'm amazed you remember me."

I mean really, do people come into contact with anesthesiologists so often they can't remember them?  I told him that he sees many patients but I've only seen one anesthesiologist in my life.  (I suppose that will change though). Anyway, he said that everything had gone smoothly last time and they'd just do the same thing this time, I said that sounded good to me.

So, they put my little hat on, and then the nurse came in an injected something into my IV that would relax me.  I kissed my husband and they started wheeling me in.  The nurse asked me if I was relaxed and rather than smiling at her, tears slid down the corners of my eyes.  My breast, which had gotten me attention, had gotten me boyfriends and a husband, which had fed two babies, had my toddlers nuzzle against them, and which I'd hoped to rest my grandchildren's little heads against - one of them was going to be gone. I'll never be the same.   I wiped my eyes and then....darkness.

The Hospitalization - Sentinal Node Biopsy

I admit to a bit of apprehension about this part of my medical testing.   I'd heard from others who had been through it that it could be extremely painful.

But then again, most people found the biopsies painful too, and I hadn't, so I kept that in the back of my mind as I was wheeled down to Nuclear Imaging.

A word to hospitals:  You really need to do something about your ceilings.  I think you need to lie the head of Maintenance and Operations on one of those gurneys and wheel him around the hospital so he can view the ceiling tiles from the same position we patients do.  Honestly, if you wouldn't put up with those cracks and stains in your house, why should you put up with it in your workplace?

Do you know what we patients imagine that those stains are?  Hmmmm??  Take care of that please.

Anyway, I got down to Nuclear Imaging.  After answering my name, birthdate and what kind of surgery I was having, the procedure was explained to me.  They will inject my cancerous breast with radioactive isotopes, and then for the next hour I will lie under a camera, which will take photos of the isotopes' path through the breast/lymph system.  The first place the radioactive goop will settle are called the "sentinal nodes."  That area will be marked so the surgeon knows which nodes these are, and those will be removed during my surgery and biopsied right away to find any cancer cells lurking within.  If the answer is no cancer, I'm done.  If yes, then they go in and take more through an axillary dissection to see how much spread there is.  The axillary dissection often leads to a difficult lifetime condition called lymphodema, which fortunately is much rarer in those who have the sentinal node biopsy.

I was happy to hear the tech, whose name was "Hai," tell me that he would be injecting lidocaine into my breast first.  Since they inject it directly into the nipple/areola complex, lots of people who had it done had said it was horribly painful.  He assured me that he used the smallest needle possible and it shouldn't feel more than a pinch.

He was right, I felt the first needle pinch which wasn't painful, and after that, nothing.  Hai was a master.  I had to massage my breast to get the stuff to spread around, which was weird because it was numb and I couldn't feel anything.

Then they got me on this skinny little table to position me under the camera.  Now, I don't want to be indelicate here - but I fit on that thing, just barely. It was maybe 15 inches wide and slightly curved up.  My arms could not fit on the table, just my back.  And, I weigh only 43.7 kg.  So, I wonder, how uncomfortable is that table for a person who weighs, oh, say...113 kilograms?  Or more?  Not only did I have to lie on that skinny table for an hour, but I wasn't allowed to move.  At all.  Period.

Well, you know what I did, right?  I fell asleep.

You know me.

When it was over I was awakened by a female tech who said, "You are cute!"  I said, "You are too!" and she totally was.  We struck up a friendship then.  She told me all about her cousin who had a mastectomy but her cancer had come back and this time was going through chemo, and a hilarious story about a fake boob and the ocean.  She also is a big fan of wigs,  she likes to change it up, and gave me lots of tips on wig shopping.  

They have this amazing high tech way of marking the sentinal node for dissection.   The female tech went over to the computer monitor and looked at where the node was.  Hai came over, stuck his finger in my armpit and said, "Here?"   She'd check the images and would say, "Nope, over to the left a little," and he'd move his finger and say, "Now?"  "No, up just a bit."  They did this until she could see the shadow of his finger on my node.  When she finally said "yes, you got it." he took out a pen and marked an X.

I believe that is what is called "state-of-the-art."

Word was sent down that a doctor was looking for me, so they readied me for transport, Cute Tech making me promise to come back and show her my wigs.  Who knows, I might.

The Hospitalization - Pre-op.

I walked back with a nurse to the pre-op area, where my weight was taken, in both pounds and kilograms.  I was 43.7 kilograms.  I'll let you find out if that's good or bad.

Then they bring you back to this little curtained bay area and have you sit.

This was my view:




Do you see the computer monitor on wheels?  Doesn't it look high tech to you?  In fact, it looks like a Jetson's character.  Jane Jetson once went to see Dr. McGravity because her appliances weren't working and she was tired from having to push too many buttons - and outside his office was a nurse who looked exactly like this! 

I kept staring at it, waiting for it to turn around, take my blood pressure, ask me probing questions and then leave to go to the next patient.  What is that dark space under it?  A roomba?  Does it vacuum too?  No wonder the floors are so shiny.  And, so fiscally prudent.  Try to get a union nurse to start an IV and then ask her to vacuum and see what happens.

How cool!  I'm in good hands, this hospital has the very latest in technology.

But, Nurse McGravity never turned around.  Soon a team of nurses came in to ask me a bunch of questions, and they were going to manually input them into that computer.  I'm so disappointed.  I perked up when I heard that the doctors had sent orders from their offices so it would be right there before surgery, and then laughed when I discovered that none of the doctors could figure out the new program and the nurses were going to have to call them anyway.

We're still a long way from the Jetson's.

Although, even Jane had to go to the doctor because her tech wasn't cooperating so maybe not.

They ask you the same questions over and over - everybody who talks to you:  What is your name?  What is your date of birth?  What surgery are you having today?  They ask you questions about every medication or vitamin you are taking, but apparently they have too many to choose from and as I discovered later, they got several of them wrong.   The Afrin and the Vitamin B didn't matter so much, but the pain-killer being input incorrectly lead to my being given the wrong medication on my release.

Anyway, after 30 grueling minutes where three or four nurses were sitting around, trying to figure out that program and where any data the doctor might have sent ended up, they finished,  Someone came in, started my IV,  and gave me a gown, hat and shoes to put on.

And, I waited again, this time for Nuclear Imaging to call me.

Snazzy shoes, no?

The Hospitalization - Waiting for Surgery

Hospitals are exactly like airports.  People come and go, dragging baggage, directed to various floors and waiting areas, taking off and arriving.  It's confusing but somehow it all works.  I don't know who the air traffic controllers of the hospital world are, but they are the unsung heroes who keep everything going.

Just as if I was taking off for an exotic locale, I was instructed to arrive two hours before my first procedure, which was the first stage of the sentinal node biopsy.   I was going to head down to nuclear medicine at 12:30 for the radioactive injection and imaging, in preparation for my 2:30 surgery.  So naturally, I was told to arrive at 10:30.

Has somebody done a study and figured out that most people are an hour and half late for appointments, so they give themselves this two hour lead time?  When I was a kid my parents had a friend who was always late, and I remember them telling him to come to dinner an hour before they wanted him to ensure his arrival.  Maybe hospitals have had to learn the same lesson my parents had to - lie if you want somebody to show up.

I'd done a pre-registration on the phone the day before, and then we were told where to wait.  We arrived on time and a very nice volunteer in a pink coat checked me in and said they were running late.

Of course they are.

We sat in this waiting area for close to two hours.  These people are all waiting for loved ones to come out of surgery or were waiting for their own surgeries to start.



Now,  you might have expected me to be sitting there, in fear, freaked out, nervous, thinking about death, thinking about my family, thinking about the loss of one of my body parts, fearful of impending pain and recovery....but what I was really thinking the entire time was how badly I wanted a cup of coffee.

Having ADD and being unable to project into the future can be a blessing sometimes.

People kept walking by me with these steaming, hot cups of coffee.  It smelled so good, and the curls of steam rising above the paper cups looked so comforting.  I felt seriously deprived.

Really, could it hurt that much to have one little cup?  As I pondered this, my name was called.  "Ann?  You are wanted in pre-op."

Music to a girl's ears.

I'm home now

Damn, nobody told me this was going to hurt this much.  Probably a good thing, I might not have done it if I'd known.

I'll post more as I'm able to hold myself up.  But, here is the great news:

Sentinal node biopsy - they took three sentinal nodes.  All three are clean!

Still need chemo and herceptin, but if they got good margins, maybe not radiation.  Should find out next week.

Now, have done all the sitting up I can do for now.  I read your emails and notes in the hospital and they cheered me up.  Will respond to them as my energy and strength comes back, and of course, share my hospital war stories.