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.

Thank you

Before I go to bed tonight, I want to thank all the people who have supported me since my diagnosis, and like the Oscar winners say, this is in no particular order:

• My online BC sisters, who have given me great advice and prepared me well for what is to happen. 
• My oldest and dearest online friends, who have surprised me with shoes and honored me with thoughts and prayers.  Some of you I've met, most of you I haven't, but all of you have made an impact on my life and I appreciate you.  Hey mom?  Hey, what!
• My closest IRL friend, who made me a gorgeous silky bathrobe to wear after surgery so I can feel elegant, even post-mastectomy.  Photo to come because everybody should see her talent. Twenty years girl, and you still got it!
  
• All of those who donated money and walked in my honor this month. I was surprised at it and calmed by imagining my name on those placards.
  
• My coworkers, who have been so kind.   This includes my boss who let me take time off for appointments when I needed it, and put up with my sometimes  grouchiness during moments of stress.  Not everybody would have done that.  The two front office ladies, who covered for me while I was gone and always kept my spirits up and never complained about my tardiness as I got more tired and moved slower.  Our Records Clerk, who is a gourmet cook and who made me lunch (and I hear meals are coming) and who, along with our special ed teacher, kept my desk full of flowers. The entire administrative staff who purchased an Amazon card for me so I can shop without leaving the house.  
• The teacher who had been through it before and gave me her own lovely breast cancer bracelet that helped her get through her treatments, and the retired custodian who dropped by to give me a Starbucks gift card, and the principal from another school who sent me well wishes. 
• The other teachers who brought me cards, teddy bears, thoughts and prayers .  Sunshine provided the most gorgeous pink roses - that are still living.  Particularly touching was the week when the entire staff wore pink ribbons in my honor, made by our student body advisor, a male, who even suffered a hot glue gun accident while making them!   They presented me with my own ribbon and a card with the student body leaders in attendance.  I can't explain how honored I was by that.  I work in a school because I love kids and believe in education - and yet by a twist of fate and office design I never see kids and do pure paperwork.  It was the first time I'd felt like I wasn't working for a CPA.
  
• I particularly want to thank our custodian, who came to me every day to see how I was, and always acted with the greatest kindness - even after having been through his wife's cancer death.  It couldn't be easy for him but he never failed to check in, and really listened when I answered.
• My family, of course, who has been supportive beyond belief.  My oldest son, who will do daily pick up and babysitting for his little brother, despite his difficult work hours and living away from home.  And, without  a doubt, my darling husband who has taken over most of the household chores and has personified the "in sickness and in health" oath.    I haven't posted much about how much discomfort I've felt and how tired I've been because it's not really important - but it has been difficult to do as much as I used to do,  and he really stepped up to the plate.   And, I know he will continue to do it without complaint.

I'm not nervous about this surgery.  I'm a little nervous about the continued treatment - chemo, radiation, reconstruction, herceptin - mostly because it's a year long process.  Actually, to be honest, it's a never-ending process.  But, I'm not nervous about the actual operation set for tomorrow.   I'm not writing this serious post because I think it will be my last, so don't get that idea.  I just couldn't go into surgery leaving people unthanked.

Could it be my pre-registration conversation about my advanced directive seeping into my brain?

Nah.   

If there is one thing I will take away from this experience, it is how wonderful and kind people can be in the face of darkness. I'm a cynic.  But, I learned after 9/11 how people can step up to help their fellow man.  I just never knew that fellow man could be me.

And, I'm grateful.

Catch you on the flip side.

The Camisole

I am one of three women diagnosed at the same time who came together in friendship.  We are Karen, Clarice and Ann.  We have dubbed ourselves the KCA gals:  Kicking Cancer's Ass.  All three of us have scary forms of cancer and all three of us are determined to put this behind us. 

And, we will.

Clarice read my post about being stood-up by the breast people and not knowing what the cami looked like, and shared with me a picture of hers so I'd know what to expect:

Wow, I had no idea the drain pocket came stuffed with a little animal.  I am informed this is a Japanese toy, called Tortoro.

See? Medical drain pockets can be cute.  Cancer's not so bad!

Breast Navigation - Post mastectomy camisole.

I wish I could give you a description or photo of this garment but I can't, as the very kind breast navigation people didn't bother to show up for my appointment.

My appointment was today at 10:00.  I love getting up in the morning as much as I love the idea of having my breast cut off and having to wear a garment like that, so I wasn't thrilled about the time.  The day before surgery, I wanted to sleep until 10:00, do some chores, prepare the house, maybe take a bubble bath and relax - but I wasn't able to talk them up to 1:00 - so I booked it.   

I'll probably need that garment, right?

I set my alarm for 8:00 and left the house at 9:30.  The address given was located in a very busy lawyer's building - busy because it was a debt relief type lawyer.  Lots and lots of people seem to need debt relief, and the receptionist was swamped.

I found the place is called the  "Woman's Health Care Image" which is a name so nonsensical (especially because there is no image) that I can't even joke about it.  The suite was right next to the receptionist's desk.  It was 9:55 and nobody was there, so I figured I was just a little early.  Maybe whoever works there doesn't like to get up early either.

They had some fabulous fish tanks in that office - debt relief must pay well to afford 1000 gallon tanks like that.  So, I wondered around and checked the tanks out and a little after ten went back and checked the suite.  Still nobody there.  I had no choice but to bother that poor receptionist and find out what was going on.

The poor thing sits under halogen lights in a very public area all day and everybody can hear every word she says, including the fish.  Not the greatest working environment in my book.  She works exclusively for the law offices but kindly called the breast navigation people for me.  No answer.  I asked was somebody normally there at 10:00 and she said yes, but maybe they were running late.

I  waited a few more minutes and then checked out their sign and hours.  Yep, they were late but aha! A phone number was on the sign.   I called it .... and got voice mail.  I left a message -  and by now I was pretty upset.  This hadn't been my idea and I'm undergoing major surgery tomorrow to remove one of my body parts and the people who had called ME to offer sympathy  and make the appointment didn't bother to show up?  I didn't say that though, just said "Here I am, where are you"  while trying not to simultaneously cry and yell. 

I waited 15 minutes and all the other things I had to do started weighing on my mind.  The receptionist has no number, nobody is getting back to me, nobody called her to leave a message for me- they flat out forgot.   How long do I wait?  It is 10:15 now, do I leave at 10:30?  11:00?  Now?   I need to get some dinners made, clean my crap off the dining room table....maybe do a load of laundry so I don't have to later with one arm.  So, I chose now.  But, not before I pulled a sticky note out of my bag and wrote this:

"10-20-09.  10:15.  I had a 10:00 appointment to pick up a post-mastectomy camisole before my surgery tomorrow and nobody is here.  Thank you for your help during this trying time."

Too snarky?  I think not snarky enough.

Immediate Reconstruction

Mastectomy with immediate reconstruction is the name of my surgery.   Immediate reconstruction is a lie deceiving term.  Unless immediate means a year, of course.

What will happen to me on Wednesday is the general surgeon will do a mastectomy.  Then a plastic surgeon will come in and put what is called an "expander" in that area under the muscle.  It will still be flat at the point and I'll need to stuff my bra with socks, like a 12  year old.

I will go in monthly for "fills" in which the plastic surgeon injects saline through my skin into the expander to stretch what's left of my skin out.  He'll overexpand it, so at some point my right "breast" will be bigger than the left, and then when it's the proper size, he'll put a silicone implant in.  At that point, my left side will be lifted and implanted as well to give me as much symmetry as possible.

I can't tell you how many times I've made fun of skinny Hollywood starlets with those big, fake, boob bubbles on their chests.  Now I will be one.

Be careful what you make fun of, it might come back to bite you.

They make fake nipples, "fipples" out of other parts of your skin.  Apparently, they can even do this out of parts of your hoo-haw but I can't think about that now.  Then they tattoo the areolas on.

I think I'm going to ask for my tattoo to be shaped like a hand flipping the bird.  FU Cancer.

Breast Navigation Program

Today, I was contacted by a very young and cute female Breast Navigation Specialist.

I just sensed the ears of all my male readers perk up.

(At least, I hope it's your ears.)

Calm down, boys, because your fantasies - as usual - do not resemble reality.

The Breast Navigation Program provides support for women who are undergoing mastectomies.  It helps them get items they need after surgery and also gives them with information on how to get emotional support.  They also will provide home visits, rides to doctor's appointments, and even financial assistance for those who need it.

Some clothing items are covered by insurance, I was told, and they will take care of the pre-authorizations for me.

"Clothing items," I asked.  "Like what?"

Men, my fantasies can run rampant too.  I'm thinking Prada bags, Jimmy Choo shoes and maybe even a Badgley Mischka gown.

Sadly, we are in the same leaky fantasy boat. 

The item I will get is a camisole for after mastectomy.  The garment has inside pockets for you to be able to tuck your drains into so they aren't dangling out when you walk through the grocery store, and I guess it has some padding to fill out your empty space.

I'm sure you cancer-free folks are wondering what I mean when I say drains. After a mastectomy, fluid gathers in your chest with nowhere to go, so they leave airline tubing in you that drains that fluid into a bulb-like device.  I may have one drain or two, depending on how many lymph nodes need to go.  These drain bulbs need to be emptied often and are left hanging from your body like Christmas lights until there is only a small amount of fluid draining out of them.  Hence, the need for a garment with inside pockets to hold the drains.  You don't want them peeking out from under your clothes, attracting small dogs and scaring children.

I know, I know.  Sexy.

So, Tuesday morning I go pick up my camisole.  I also will be getting some information about free massages, art therapy classes (where presumably I'll be painting pictures of breast-less women until I feel better), and meditation and visualization classes.  

I'm so visualizing a martini right now.

"Are you waiting for me to die, or what?"

I saw my new plastic surgeon, Dr. Solomon.   By the time I did, I was sort of beyond caring about the appearance side of things.  It's time to get the cancer out.  I'd been told by two people who knew him that he was arrogant, and maybe he is, but my first impression was that he wasn't arrogant but extremely smart.  Anyway, arrogance isn't necessarily a turn-off in my book, as long as it's backed up by something.

Just so you are clear:  in this case, that would be brains AND surgical skills.

He wasn't the kind to sugarcoat things - he flat out told me I probably wouldn't get a result I was very happy with.  He can't make anything like what I have now. 

I can't look for doctors anymore so I am keeping him, at least in the beginning.  I can change later if I'm unhappy.  So, their scheduler, who had an opening on the 20th,  was going to coordinate with Dr. Raja's office, who had already scheduled me for the 19th, and get back to me the next day.

On cue, the next day my phone rang.  It was Dr. Raja's office calling, and the woman happily told me my surgery date.

November 13.

I was - briefly - speechless.

I recovered.

"November 13th?   Are you waiting for me to die, or what?"

She nervously laughed. No, no, of course not.

I continued.  "That date is completely unacceptable.  I can't wait that long.  That's three months after I was diagnosed, and two weeks ago the doctor told me that it was extremely aggressive and needed to be done immediately."

She said she knew.

I suggested she find another date.

I was so mad that I got in my car and went to Taco Bell.   I'm going to eat pure crap and make that cancer grow so big that in November, when they do take it out, they'll be sorry they waited! That'll show 'em.

As I munched on my burrito, my phone rang.  They had a counter offer: October 30th.

Still too long in my mind.  Every woman on the breast cancer forums who was diagnosed the same time as me have had surgery, and many have had their first chemo already.  Women who were diagnosed a month after me have had their surgeries.  Most of these women have a far less aggressive form of the disease than I do.  At the tumor board meeting, the doctors unanimously agreed upon that they had to act fast with me.

I don't think three months is really fast, do you?

I told her that it was still not acceptable.  I would take that appointment tentatively but I wanted her to find something else.

We ended the call.  And, I didn't calm down.

I started thinking I was going to have to get another opinion and start all over.  Then I thought I should at least remind the doctor what he told me two weeks previously,  and find out what, exactly, the delay was, and why I wasn't a priority.

So, an hour I called back, and got their exchange.  I asked for Dr. Raja to call me himself.

Well, he never did call me back, but this morning I got a phone call.

My surgery is on October 21, at 2:30.

I don't believe those doctors would have rearranged schedules if it wasn't important - they just had to be reminded.  Like everybody says - you are your own best advocate.  They see too many people to remember each one. 

What I really can't believe is that I had to insist somebody make time to amputate one of my body parts. My favorite body part, at that.

Is there a word for having to do that?

Yes, I went back

Dr. Davey called me and asked me to come back in.  Since they aren't drilling anything and are only planning on matching up my new Da Vinci veneers to my natural teeth, I said what the heck.  I  told them to break out the yellow, and I'd be there at 4:00.

The guy who is creating my teeth was there as well, and he is apparently some sort of ceramics artist.  He did the teeth of Miss America, Peja Stojakovic, some super-famous movie actress whose name escapes me because when I do get chemo brain, nobody will ever know,  but you know who she is, and some Queen, maybe of Jordan or something.

Awesome, I'm going to be fricking gorgeous.

And, he told me he charged them more than he does people like me!  Tee hee!  Good to know - I like to stick it to the rich, especially when they get free clothes and I don't.

They did all these measurements, and put all these little strips against my teeth to see what would match. They also did some sort of chromachromatic thing.  They asked me if I want them to match perfectly or be whiter than the rest of my teeth -  and while I would LOVE super freakishly white Hollywood Movie Star Teeth, especially now that I'm getting fake boobies to go with them - I am not sure that's wise when you are only talking about the front two.  I already look like bucky beaver and having two really white front teeth might be, oh, slightly off-putting.

I asked if I could change the color on the day (when I'm 85) that I can afford to put them on the rest of my teeth, and Dr. Davey told me that he would do it at cost if I changed my mind.

Holding you to that, Randy.  

So, I chose to match.  Apparently, they can take off a few millimeters of my overbite too, so that's cool. And, they explained that they have to match the uneven teeth next to it so precise measurements had to be taken to give the illusion that they were all the same size.  All this made me want to put some veneers on those eye teeth too, because now I know I can have great teeth -  but I think I'll work on the cancer and fake knockers first.

Practical me.

I sat in the dental chair and grimaced like a monkey while they took photos of my mouth and teeth so he could perform his artist magic. 

If those photos end up on the internet, somebody is getting sued.

Dr. Davey asked me if I would write something up about my sedation experience as they were thinking about using my story in advertising, so I said I'd be happy to.  Amazingly, he hadn't thought about the emergency chemotherapy dental market before.  But, he did a good job, and I was treated with great kindness and respect,  so I don't mind if the guy wants to make a buck.

I'd do the same.

Oh, and my tongue is getting oh so slightly better too, I think.   I could taste a candy corn today.  (Not being able to taste them hasn't stopped me from eating them, by the way. Just thought you should know.)

Tomorrow I see the plastic surgeon.  Unless he comes out with a dental drill, I think I'll just stick with him and get it over with.  I can always switch later if my breast is not forming to my satisfaction.

Time to get this cancer out.

What ith like to have a numb tongue

It'th hard to eat. Thoup thpills out my mouth but it'th what I'm thupposed to eat to thooth my gums. Everything tatheth like metal, ethept thugar, which tatheth like plathic mixed with metal. Thpeaking is hard.  It geth worth ath the day goeth by. The tingling on the thide of my tongue is very dithracting. I altho am getting thooting painth in my teeth.

I'm thoooooo glad I went to the dentith.

"you, of all people...."

My dentist's office called me this morning to check up on me. I said I was fine, but how long would it be until the numbness went away?  Shannon said, "It should be gone by now, but let me check with the dentist, hang on."

A minute later Dr. Davey gets on the line and asks me where I'm still numb.  I told him my tongue, the right half.  He said that it wasn't leftover anesthetic, but a known, yet rare, complication of dental treatment.  When he'd injected me with Novocaine, he'd hit the lingual nerve, which causes numbness. Lingual Paresthesia is the technical term, or so Dr. Google informed me later.  It could recover in two days, two months, two years - or never.

Dr. Davey said, "It had to happen to you, of all people."

Yep. I told you, me and dentists do not do well together.

Once my cancer treatment is over he wants me to come in every three months for cleanings.

Hahahahahahahahahahahahahahahahahahahahahahahaha!!!!!

Right.

Now,  I don't say that because of Dr. Davey, who was wonderful, kind and caring as was his entire office staff.  Go see them if you are in Sacramento, I highly recommend them.  I know that this tongue thing wasn't his fault - they can't see where that particular nerve is.   It happens sometimes and it's just one of those things that occurs for no reason.  Like cancer.

But, every time I go to the dentist I have some very weird thing happen to me.  The universe is saying, "No More Dentists."  I think I should heed the 'verse.

Well, I'm just considering this tongue situation a preview of the chemo side effects to come, because now everything tastes like metal.

The Dental Appointment - Sedation Dentistry

10 milligrams of Valium in at 10:00 pm the night before.  Watch Sons of Anarchy, polish nails, then go to bed.

Wake up at 6:45, take Halcion at 7:00.  Read paper, take bath.  Make it to appointment at 8:00, carrying mini-cheesecakes for all the nice office people.

They give you more medication, and I was about a three on the sleepiness scale.  Then they give you even more. This stuff is lorazapam, (I think, not sure) crushed and goes under the tongue.  I think I had three different kinds of "apams" in one day, plus other stuff too. 

Once they started the dental procedures, I was pretty out of it.  I drifted in and out of sleep.  They also put the nitrous thing on me, so I got an extra dose of  gas.

They were done with me at 2:30.  My entire face was completely numb and I couldn't swallow. Or even close my mouth. Looked like something out of a horror show, trails of bloody spit dangling from my loose lower lip.

Despite warnings not to, I've been sleeping ever since.  It's 7:30 pm now and my husband just made me get up to eat some eggs.

I think I'll remember what I already remember.  Which is mostly fading in and out of consciousness while they did their work.  Saying "open wider" and "give her more meds" and feeling some shots going in, which still hurt despite all the drugs.

I am in a bit of pain now, they really went to town in there!

Sometime while I was an my drug-induced coma, Dr. Raja's office called. I have an appointment with Dr. Solomon on Tuesday morning.

A new plastics consult

Dr. Raja rocks.  He's going to set me up with a new plastics guy, and if I don't like him, I'm going to a specialist in San Francisco who does nothing but breast reconstructions. I don't think he fully understood why I didn't want to see yesterday's doctor but he accepted my choice - I told him I wanted a board certified plastic surgeon who specialized in breast reconstruction.  He even said that if I wanted to switch my team completely he'd be fine with that and set it up for me, but I do actually like and trust Dr. Raja so I don't want to switch away.

Plus, he said I was young!   "You are young, so of course you want a reconstruction you'll be happy with."

Any guy who calls me young can stick a scalpel in me any time he wants.

Tomorrow is the dentist appointment.  Remember, anything I post tomorrow, I won't remember later.  I can't be held responsible for anything I say, and it's probably all a lie anyway.

Plastics consult

The plastics office was in a nice neighborhood - but a shabby old medical building.  There was a homeless guy sitting on the steps out front.   Not what I expect when I go to a plastic surgeon's office.

Where's the tasteful and elegant mahogony furniture?  Where's the cucumber water?  Where are the beautiful girls with perfect teeth and breasts? 

Inside, I filled out the usual paperwork and stared at a People magazine with Patrick Swayze on the cover.

Nice choice.

The receptionist (who I also suspect might be the surgeon's wife) turned on some music.

Loud.

Remember how I complained about having TV on in medical buildings?  I take it all back.  A TV blaring Dr. Phil is ten times better than listening to Andrea Bocelli.

Look him up if you don't believe me.  (Yes, despite the name it's a he. Yanni is a he too. If you like Mr. Bocelli, you can't be my friend.)

So, I pulled out the iPhone, fired up IHeartRadio and tuned to Michael Medved to drown out the cheesy tenor, and I waited.

The doctor called me back and he was very solicitous.  He said he knows my case, asked me about my tests, when I found the lump, etc.  He said (as I knew) that I'm not a candidate for any of the flap reconstructions as I'm too thin.  He proceeded to pull out photos of implant reconstructions to show me what to expect.

Now, I think he was pulling out photos of his best work.  He seemed proud.  I'm not sure it helped that he kept saying they were ones he'd done in 1988.....and, they were all completely unacceptable in my estimation.

I've looked at lots of after-mastectomy reconstruction pictures online - and I do realize that these are probably the most successful and brightest of surgeons, showing off their best work and not ones of lesser quality.

But, these pictures did not resemble those at all.

Every reconstructed breast was uneven, lumpy, had strange folds of skin hanging down.  When I'd point it out and ask "Why is it like that?" he looked puzzled, like it looked fine to him.  "Oh, that is from where the skin pulled back over some scarring"

Hello!  And you didn't fix it?  Or even notice it?

Even when there were double mastectomies, they were not symmetrical, and he said he was impossible to get them that way and that the women were happy like that.  I'm talking a watermelon and peach here too, not cherry and strawberry.

Then he showed me his reconstructed nipples and tattooed areolas.  (A word that, by the way, he didn't know how to pronounce.)  They were shaped like Texas, and California, and bears and dogs - but not areolas.  He said it was difficult to get them perfectly round.

I sat there staring at the photos in shock.  Honestly, I thought I was going to cry.  Has the internet been lying to me, and this is what I have to look forward to? Dog ear folds on the sides of reconstructed breasts?  Oddly shaped placement?

He saw my shock and was very understanding.  He said that if I wanted a second opinion he would be fine with that, he wanted his patients to be comfortable.  I told him that I hadn't expected what I was seeing, that I had no experience with this, and maybe I should look at more pictures from others to be sure.

I'd been told there was only one plastic surgeon in my medical group, but I just looked it up and there are four total in my metropolitan area.  So, I can at least see one more.   I called my surgeon to make the request.

They already had me scheduled for surgery on the 19th.   I hope I still make it,  but not if my boob is going to come out looking like a puckered, deflated balloon - AFTER reconstruction.

I'm seriously disappointed and slightly sickened.  I'm quite ready for this to be started and scheduled.

Breast Cancer Awareness Month

I thought pink cans of soup were stupid before I got breast cancer, and I still think they are.  But, I don't care enough to rant about it.

Instead, in honor of our special month, I will leave you with this poster somebody emailed me:

Happy Breast Cancer Awareness month.  You can send your gifts to my house.

I like Progresso.

My dental appointment

With great trepidation, I got in the car to go to the dentist.

Words that bring a chill to my heart.

Because the office was close to my son's school, I picked him up first, and then proceeded to make my decent into hell.

I figured having the kid there would force me to be brave.  You can't break down and cry in front of a 12 year old boy - they just get grossed out.  Especially one who has no fear of dentists.

(And, the fact that I felt teary at the thought of this dentist appointment should tell you something.  I think the last time I cried was during my first son's birth, almost 23 years ago.  It was 48 hours of hard labor, with pitosin, and completely unmedicated.  I think I dropped a tear at hour 32, after screaming GET IT OUT OF ME and they wouldn't.)

To lighten the mood on the way to the dentist office, I bet my son that there would be a fishtank in the dentist's office.  When we arrived, he was pleased to point out, "Look mom, there's no fishtank."  He'd failed to turn around.  I pointed to the back wall, and he saw it.  He has his father's keen observational skills.

Now comes the part that disappointed me.  Nobody there was wearing horns.  Nobody there was carrying pitchforks. Nobody there had evil eyes with gleaming white teeth a cruel, malevolent smile.

In fact, everybody was amazingly nice and incredibly solicitous.  And, I do mean everybody. If the lady who sweeps the floors at night had been there, I know she'd have come out and wished me well and maybe even shined my shoes - they were THAT nice.

I can't complain about this appointment, as much as I want to.

I can't complain about the dental assistant, who took her time taking x-rays so I wasn't freaked and who doubled up the lead protection on my chest in case I had to have radiation later. She never laughed at me, even when my blood pressure, which is usually 110/70, and has never been higher than 120/70 - not even when was hospitalized with appendicitis - shot up to 140/85, nor when I gagged during the x-ray procedure.

I can't complain about the dentist, who was extremely  understanding about my fear, told me what he was going to do before he did it, and who did not give me one lecture about flossing or brushing.

(Have you ever had a dentist skip that lesson?  I haven't.)

I almost fell in love when he told me my teeth looked in really good shape for not having any cleanings or treatments for 8 years.  I was sure he was going to tell me they weree rotted out and needed to be pulled.

I can't complain when he spent 40 minutes going over my medications and any interactions with ones he wants to give me to make sure I'd be safe.  Or when he said he'd contact his friend who is a professor at Harvard Medical School to be sure everything would be fine.

I can't complain about the office staff who understood I needed to do this quickly and, despite the fact that this dentist was fully booked until December, made that happen.  (October 7th is the day.)

I can't complain about the other patients - one of whom gave up their appointment slot to give it to me so I can get everything done before chemo.  Whoever that anonymous person is - and I don't know if you were even informed of why you were asked to move - you deserve good karma.

As for the diagnosis, I do have gum disease, under the gum line, as anybody who'd gone years without dental care would.  They can do that in one treatment  (as long as I'm sedated) and the bacteria will be gone for chemo.   I have a cracked tooth (which I knew) which is creating heat/cold sensitivity.  I have one small cavity.  Other than that, nothing else is wrong.  Cosmetically,  I have a cap on the front tooth that is 20 years old and my other front tooth broke off years ago, was cemented together and is discolored.  They can do Da Vinci veneers for those - all in the same treatment.  He said my other teeth look fine.

They even are going to rush the veneer process, because they are made off-site and will come in about the time I start chemo, and my temporary caps might not withstand any vomiting that could happen.

What can I say?  Maybe not every dentist trained at the Steve Martin school of dentistry.

But, there is one creepy thing.

Super creepy in fact.

The sedation they are giving me (this is sedation dentistry) ..well, it keeps you awake.  You are apparently there, but not there.  You need to be monitored but can walk and talk and respond.  If you have to pee, they take you.....but you know you have to pee.  You won't remember anything but are apparently function as normal.  I can listen to music on my iPhone, but not text.  Because, I won't know what I'm saying but will be capable of saying it.   My husband has to come and sign papers that says he realizes that I may act normal but will not actually BE normal and need to be monitored.

That's just weird.  I hope I don't confess that murder I committed.

Especially since it was a dentist I killed.


I'm giving a shameless plug to this dentist, because he was so great.  If you are in Sacramento, here ya go:

http://www.daveydental.com/

Plastic Surgeon

True to their word, they got me a quick appointment with a plastic surgeon.  Monday at 3:00.  I wouldn't be surprised to learn that I'll have surgery the following week. 

Now, I am off to the dentist.  God help me, I'd rather slice off my boob myself then go to this dentist.

I'll post back, if I'm not too traumatized.