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 - 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?

I Left My Lobe in San Francisco: Liver Resection Hospitalization - Vignette 1&2

I was in the hospital for six days.  Actually, I left the morning of the sixth day, and the first day I had surgery, so being an over-achiever, I am going to say recovery took me four days, with each day getting a bit easier on me.

After a day or two, I settled into a routine.  I felt really good in the morning but at 3:30 I suddenly crumpled.  The pain became intense, and I starting pushing the button for extra meds and watching the clock until I could get my next dose of dilaudid.   I don't know why it happened in late afternoons, but it did.  I was grateful (and surprised) to feel well for half the day though,  and spent my time leafing through magazines, reading the paper, playing with my iPad and chatting with my family. I got out of bed and sat in the chairs for longer and longer periods each day.    I had visits from my stepdaughter, which I much appreciated although she often came after work which was when the pain had hit and I was tired.  It was nice for my husband though, who got to leave the hospital and take her for some food.  Here's what I remember most about the hospital stay.

Hospital Vignettes


The Catheter

I was quite fearful the day they took the catheter out, which was the second day after surgery. The comfort of having a urinary bag cannot be over-estimated; I highly suggest you try it next time you feel like playing Farmville for three days straight.  Style-wise?  Well, they need some work. I'm not even sure Michael Kors could help with that, although wouldn't that be a fantastic challenge on Project Runway? "Make this catheter bag a style feature all women will want."  Those runway models have a hard enough time walking in some of their shoes; let's add a catheter bag dangling down between their legs. Now, that's good TV!    

Once I knew the catheter was coming out, and I'd have to get up to go like a normal person,  the bathroom looked like it was 100 miles away: a trail littered with bones, rocks, sand, and the puddles of those who had come before me.

I knew I wouldn't make it.

The nursing staff put a commode near my bed, "just in case" and told me to call if I needed help.   I was disgusted - me?  A commode?

Peeing near your bed like a dog?  No wait, even dogs don't pee near their beds.  Peeing near your bed like some kind of wild animal, or hoarder who can't get through the newspaper pathways?

Not on your lfe.

I guess I don't value your life much.

It's the middle of the night. (Probably 9:30).  I'm all alone and need to pee seriously bad.  Why doesn't the CIA do this kind of torture?  Hook somebody up to an IV that drips gallons of liquid into them, and then make it impossible to use the restroom?  I'd tell state secrets, wouldn't you?

Anyway,  I still had the epidural so my legs were numb and walking was impossible without help, plus unhooking an IV behind me on the wall was an issue - so the bathroom was out of the question unless I called an aide.    That night, my nurse's aide was a man:  a young, good-looking man.   I'm still old-fashioned enough not to want a hot dude to help me take a pee.

That's for old ladies.  Or fetishists.  

There was nothing to do but use the commode.  On my own.  Without anybody to hold my hand. See, I told you I was a risk-taker.

I maneuvered myself like a snake to the side of the bed and used my bad arm to push myself up to a sitting position.   It was one step to the commode but it was a complicated step - I had to put my hand on it to steady myself, pull my gown open in the back, move all the IV tubing,  then pivot and sit, all with numb legs and a stapled stomach that could spill its contents at the smallest  provocation.

But, I managed.  I struggled, but I did it!  Independence!  I was sitting on a commode!  

When you have an epidural, you can't really feel anything down there, or start or stop your flow properly - it just sort of.....happens.  Numbly.   So, I sat there for a while, hoping things would begin, imagining how it used to feel and hoping that would help, when I suddenly realized my wrinkled nude behind was facing the door, and the curtain covering the area only went to mid-back, and the light was shining under the curtain in my direction.  Anybody who walked in (and in a hospital, everybody walks in) would be greeted by the site of my skinny rear, all lit up, spread out on a commode.  And, given my condition, I would not be able to protect what was left of my dignity by covering myself. 

Now, not only did I have to worry about how to start to pee, I had to worry about somebody coming in, seeing me in that compromising position, worry about protecting my personal privacy, and then getting a lecture on taking this huge risk and peeing alone.

Who could come in?  What if it was a doctor wanting to discuss results?  What if it was the cleaning man?  What if it was a radiology tech?  Do I sit and pee have a normal conversation like nothing was going on?  Do I scream, "Get out!"  Do I just pretend like I wanted to get up and that was the only place to sit, and nothing was happening?

I was trapped.   I wanted to get this over with but while my mind was going a mile a minute, my hoo-haw was apparently in a coma. 

Suddenly......ahh....relief.  The stream started.   I was peeing like a hoarder,  right next to my bed.  And peeing.  And peeing some more.  And urinating.  And whizzing.    And suddenly, I realized that that I possibly had a lot more pee in me than that container could hold.

But I couldn't stop, my bladder was open and there was no way to shut it.

Add overflow to my list of worries.

Fortunately, I finished right in time.  The urine level was so high up that the person who later had to dump it not only commented but had to be very careful taking it to the toilet. "Wow, you must have really had to go."

Hospital personnel are masters of understatement.

Anyway, after I was done, feeling quite successful (and proud that I'd remembered to grab a tissue), I gathered myself, weakly got back up, and somehow got back into bed.  And slept, quite well, right next to a full bucket of pee.

No, this isn't me, but doesn't she look happy?

Pain Control

The first day post-surgery was a blur of pain.  Again, I have to mention how grateful I am to my family, who helped in so many ways, big and small;  from handing me things I couldn't get on my own, to talking to medical professionals, to keeping me company.  I highly recommend that if you have an upcoming hospital stay, you find one person willing to spend time with you, even if you have to pay them.  It makes things so much easier.

One big help came when my sister took charge of one of the nurses. The majority of my experience with the nursing staff was outstanding, for which I am grateful after my last experience.   This time, I was given appropriate care - with one exception.

First, let me explain: I have a theory about pain and pain medication which developed after my mastectomy/reconstruction, when I had to spend an extra day in the hospital due to poor pain management (and poor nursing care).I believe that pain control is key to recovery. The more relief you have, the more sleep you get, the more you can cooperate with the nurses when they ask you to get up, the more you can relax and let your body do the hard work of healing. When you are in pain, your muscles are tight, you can't sleep, your breathing is abnormal and it is much harder to recover.  You don't get addicted to pain medicine during in the time you are in the hospital, at least not during a normal stay, so there is no reason at all not to take pain meds.

If you wanna be a tough guy, have at it.  Me?  I'm taking all they give me.

I discovered that is not only my theory.  I was given brochures saying exactly this with my registration paperwork, and UCSF as a whole believes strongly in pain management.  Still, traumatized by my experience at Mercy General, I mentioned pain control to all of my doctors, from SuperSurgeon, to Anesthesiologist,  to Exhausted Med Student, and all agreed with me wholeheartedly, in both theory and prescribing.

The doctors prescribed IV pain meds, and told me I would transition to oral pain pills when I could eat, which would also signal to them that I was getting ready to go home.  I was not expected to eat for a few days, which is normal after somebody has rearranged and removed part of your digestive system.  I had an epidural with a button I could push for extra pain control every 15 minutes, and I was allowed a shot of dilaudid every two hours.  They said I might be in pain a little between shots and they couldn't control it entirely, but would do the best they could and not to be afraid to call the nurses and get what I needed.

That sounded fair to me.

So, my one and only male nurse came in on Day One post-surgery.  He introduced himself, and then stood at the foot of my bed and began his pain medicine lecture.  He told me that he wanted me to take oral pain medicine since it would last longer in my body, and he would not be bringing me IV meds.  I asked him what kind, and he said percocet.

As an aside, I know that percocet was not going to touch the pain that I had right then -  24 hours ago I'd been cut from between my breasts down to my waist, a major organ half removed and burned, and then sewed and stapled together. Percocet is what people take for headaches.

I was quite alarmed at his pronouncement. It was not a suggestion - he was telling me what he was going to do.  He wasn't going to come in to give me shots.  I knew I'd be under his care for at least 12 hours.  I had flashbacks to my last hospitalization and became afraid.

I weakly argued with him, telling him that not only had I spoken to my doctors about what I should get - that very morning, in fact -  and they wanted me on IV meds to be transitioned to oral when I could eat.  I also told him my philosophy about pain relief, and I didn't believe a 5 mg percocet would give me relief for the kind of pain I was in - I'd taken it before and I knew.  He didn't care about my thoughts,  and stood there arguing with me. Literally arguing with a woman in my condition, despite my becoming visibly upset.  Unfortunately,  I didn't have breath or strength to become assertive about what I needed, which is where family comes in.

He left the room, and shortly after, my sister also left.   I don't know what happened in that hallway except she spoke to the nurse.  But I got my pain meds every two hours with no argument, and after that one day, he was not my nurse at all.  For which I was extremely grateful.

I've come to believe he just didn't want to come in every two hours to give me pain relief.  If he did think that oral pain meds were the better course for me, than he has missed his calling and should have gone to med school so he could prescribe what he wanted.  My sister, after talking to him, also believes he just didn't want to be bothered every two hours.

The rest of the nurses gave me my ordered pain meds every time I asked for them, and each and every one of them were wonderful, even if I was annoying, which I'm sure every patient can be.  I can't remember any of their names and I wish I'd written them down, because they deserve a paragraph about their kindness and understanding, rather than the one person who was only concerned about his own time.

I am especially grateful to the nurses aides (they have a fancy title that I forget).  They were the ones who gave me a sponge bath, who helped me to the restroom, and who generally took care of all the icky things that have to be done.  I dislike very much being dependent on anybody, and I'm sure I always will, but I'm grateful that these people were so kind.

Of course, once time, more than kindness brought them to my room..








I have a goal; I'm trying to get my facebook "likes" at 999. For no particular reason, other than everybody needs something to shoot for. So, if you have no liked his page yet, and you did like this post, please "like" me on facebook.  You can do it to the right. Thanks!

Tooth and Sinus Infection and Metastatic Breast Cancer

I would be ironic, given my love for dentistry, and after all I've been through, if a bad tooth took me down.

For about three days, I've had a sore tooth. I did what I have always done - ignored it. I figured it would go away or I'd have to see a dentist but the pain wasn't that bad and it's a busy time at work. Graduation is tomorrow and after that, although I am working until the 30th, I am free and clear to make an appointment, since no kids and teachers are depending on me for immediacy. It's not that there is nothing to do but that it can wait a few hours, unlike during a school day.

Truthfully, I'd almost rather have more of my liver removed than see a dentist. So, I rinsed my mouth with salt water and flossed extra and just made sure the area was clean and went about my life, hoping the toothache would disappear.

I forgot.

Yes, I'm a normal person. A normal person with metastatic cancer and no immune system.

Yesterday, my alarm went off and I was unable to get out of bed. I was completely wiped. I couldn't eat, drink or move. Too weak. Last time I'd been like that - that weak and sick, I'd had c-diff. On day two I'd gone septic and went to ICU. Last time, I didn't get a fever until about 7:30 on day two either. I had no fever yesterday either but was weak as a ragdoll.

I figured my tooth was infecting me. I took a leftover vancoymin (shouldn't have, don't do this at home, kids) and called the doctor's office, both to cancel my chemo and talk to a nurse.

They said not to take anything and to go to the ER if I got worse. I didn't talk to a nurse I knew. My own personal chemo nurses know that if I'm calling - if I skip a chemo - it's dire. In three years, the only chemo I skipped was when I was hospitalized. I don't call for just anything, in fact, the only other time I called them I was already septic. So, I was not happy with that answer.

I kept taking the vanco every 6 hours and called this morning to confess my sins and ask what to do. I was, admittedly, quite afraid of going back to the hospital again and the vanco seemed like a lifeline. But now, I needed to 'fess up and know, do I keep taking it or not?

It seems to be helping. I am still feeling bad but am up and about. It's clear I have a sinus infection; my left eye is also infected and my tooth still hurts and of course, I have a headache, but I am able to get out of bed, and I took a bath, an impossible-seeming task yesterday. (I hate to go to the hospital sweaty.) I got to talk to a chemo nurse I knew today, who was a lot more sympathetic. The doctor said to keep taking the vanco since I do feel slightly better. The vanco is likely not going to work on the infection; it's not designed for that, and I'm in a precarious place, according to the doctor. I might go down again.

Remember, I am not able to take any other antibiotics, ever again, because of c-diff. I am a cancer patient who can't take antibiotics, which is not a good thing to be.

I will see the doctor Monday, assuming I survive the weekend without hospitalization. Then I have to figure out how to be treated for this infection. My hope is that the vanco takes care of it, even if it isn't used for that typically.

Graduation is Friday, which I guess I'm going to miss. My last graduation as a school employee - how sad. I really wanted to see those kids off.

Wednesday I am supposed to drive to San Francisco (100 miles) to have a PET scan that is the tie-breaker that will tell me if cancer is growing back in my liver. If I can make it, and it is not growing back, then maybe I can stop chemo for a bit and let my immune system recover to help fight off this infection.

I might have to stop chemo anyway.

The 23rd is my stepdaughter's wedding. How can I miss that?

I know there is no convenient time to get sick and maybe die but this is definitely not it.

When my son came into my bedroom yesterday, scared as crap at my health, I felt so sad. I'm ruining his childhood, and he has everything going on but me. He's a straight A student in one of the hardest programs in the country, plus he's a wonderful kid, lots of smart and funny friends, hopes and dreams that are difficult but achievable and he's doing all that with fear and knowledge that any day, he could wake up and won't have a mother.

People tell me I'm strong. He's the strong one.

I have promised to blog as long as I can, to share my story and so today, while I am up and about, I figured I'd tell you what is going on with me. I will try to continue to update with twitter. If I stay steady, if nothing changes, if I get better in the next few days, don't expect tweets that say, "I'm fine!" but if I take a turn for the worse and have to go to the hospital, and I am able (which I should be), I'll let you know. In this case, no news will be good news.

My twitter feed is @butdocihatepink and it is over to the right, embedded in this blog so those not on twitter can see it. I don't really know how to use it so if you say something to me and I don't respond, that's why, I'm not being rude. One of my plans for when I finished work on June 30th was to become expert in tweeting and maybe actually say something interesting and figure out what the heck all those # signs mean.

Just when you think you are doing good, that you might have a little time, when you plan things a few months out, that all is well, cancer laughs and smites you down into reality. "You?" it says. "You are not in charge, I am. I can take you any time I want, through any means."

Even a little toothache.



.

Oligo....wha???

"Oligometastases"

I know what you are thinking.

"Oh my God, you have that too? Is that what the MRI showed? How unfair can life be? Haven't you been through enough? What can I do for you: is clicking on the donate button enough? ---->"

Well, thank you, but actually, Oligometastases is a very good thing.

It's "a clinical state of metastasis that refers to restricted tumor metastatic capacity. The implication of this concept is that local cancer treatments are curative in a small proportion of patients with metastases."

Here you go, read to your heart's content.

And, there's more.

So, here is how the visit Wednesday with my doctor went:

As expected, my MRI showed nothing. In all his 80 years, Hugh Heffner hasn't inspected any pelvic region in as great a detail as my oncologist has inspected mine, so I'm just going to have to live with this back pain. But, I have a new theory about the cause that I'll post later.

My doctor asked how I was doing on the Navelbine, and I said fine, it's a pretty easy chemo. He said he liked to use it because people rarely have problems with it. Then he said that we'd rescan me in three weeks to see how my liver was doing. He'd see me in a month (on August 17th), and if it didn't work; if there was progression, than he'd switch chemos.

I asked him, "What if it does work?"

I mean, duh, let's not be negative here.

I added, "Do you think I'll have radiofrequency ablation?"

He said no, that if the chemo worked and my tumors shrank, he'd send me to UCSF for a surgical consult. Since they are treating me with "curative intent," surgery has a better outcome.

Did you hear that? "Curative Intent!"

That means, in case you missed it - he thinks I could be cured. I could be one of the .00005% of people (or whatever) with mets who actually don't die of it. Or, at least, don't die soon - the five year survival rate jumps to 40%, according to one study, and I don't think they even do ten year studies.

Talk about winning the lottery - the highest stakes lottery of them all, I might add. I'll never be able to complain I don't win things, ever again.

Okay, I know that I'm a long way from cure and I know the ups and downs of this disease. My scans might not show regression and, indeed, might show tumor growth. But, now I have something to keep my fingers crossed for, because it could possibly mean a much longer life than I thought.

I have a lot more husband-nagging to do, I can tell you. I have a feeling my plan of writing it all down for his future use wasn't going to work.

Open this note after dinner: "Honey, please wipe up the water off the counter, you always forget." Nope, I bet those notes would go straight into the garbage.

Looking far ahead, a liver resection looks like a brutal surgery with a couple of weeks of hospitalization, and to have it in San Francisco, away from my family, well, it would not be fun, especially if the nurses treat patients anything like they do here. Family visiting San Francisco on weekends would be expensive. (Hence the donation mention. I'm just trying to get you used to it for the future, in case the amazing does happen and I need a little extra to fund it.)

It would all be worth it though.

My white counts are very low and I'm back on leukine. My oncologist and I chatted a bit about going to the California State Fair. The food specialty this year is a maggot melt. Oh yes, you read that right.

He said that thought of that specialty grossed him out, even if it tasted good - knowing what maggots feed on.

I agreed.

I told him my goal was to stay as far away from maggots as possible.

"Oligometastases"

.

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.

.

I Left My Lobe in San Francisco: Liver Resection Hospitalization - Vignette 5, 6 & 7

Shaking bed

Everybody who has had surgery knows about those compression "stockings" they put you in.  They are blow-up plastic tubes, kind of like a raft, only for your legs.  They are rolled around your calves, attached with velcro, and plugged in to the wall in order to give you a constant massage.   They do this to prevent blood clots from forming in your legs.

Now, you might think a constant leg massage would be pleasant, but you'd be wrong.  After a while, it's like that Vietnamese guy who gives you the massage after a pedicure and doesn't know when to stop.  It goes on and on and the oil dries out and you are starting to feel bruised, but he's smiling up at you, saying, "You like?" thinking he's giving you special service, and wishing for a great tip.  The hope in his eyes gives you no choice but to say yes.  (And, to tip him well, which encourages him to bruise his next customer.)

These automated things are very annoying and every time you need to move, you can't because you are plugged into them.  On Day Three, I'd had enough and took them off, and hid them from the nurses.  I figured I was up and walking by then and wasn't going to clot.  (I did the same with the nasal cannula for oxygen, another annoying piece of medical equipment.)

Unfortunately, I couldn't turn off my bed.  Technology has come a long way, baby, and along with the compression stockings for your leg, your entire bed can act as a clot preventer. 

My bed shook chronically, like a laughing Santa and his bowl full of jelly, except that I wanted to kill him, and I would never kill Santa.  It went left, right, vibrated, jiggled, up and down and back again. It was near impossible to get comfortable in that bed and it was loud too.  As soon as I'd find a comfortable position, the bed would jiggle and move me to the left,  and I'd slide down, right onto my catheter tubing, right on to the epidural wire, causing a jolt of pain.  I used pillows to try to prop myself in the same position despite the movements of the bed, but it was too difficult.  The jarring of the bed moved the pillows, so you ended up at its mercy, like being rocked in a sailboat and not being able to stop the water.

Then came the time when it malfunctioned.  Suddenly, it was acting like it was possessed - like the exorcist. Not only would it jiggle up, it would actually go up a few feet, as if I'd pushed the button to sit up.  This was quite jarring at 2:00 a.m.  It would do this for a few minutes then stop.  I told the nurses, who didn't believe me, and dialed back my medication.  It never happened when they were around, of course.  Once, my husband saw it and we complained again.  This time, the nurse believed us and called somebody in, who pushed some button and it stopped.  Well, it didn't entirely stop, the bed still did its vibration thing.  But, the ghosts went away.

Weaning off the Epidural

I was starting to be able to get through a cup of tea, some oatmeal and soup.  And jello, which I never liked, but which is spectacular in a hospital; even the green.  My food intake meant it was time to wean off the epidural and start on oral pain meds.  The epidural had delivered a steady amount of pain killing medication directly into my spinal canal, and I could add more every 15 minutes.  This was my main pain control after the operation, and now it was day five and I felt good.  

I was, frankly, terrified.

I was attached to that machine like an umbilical cord, and I felt it gave me everything a real umbilical cord would:  safety, comfort, and in my mother's case, a few mind-altering substances.  (It was the 50s: martinis, cigarettes, and pregnancy was apparently a normal mix.)   I knew if they took me off it, I would end up in agony, suffering, feeling the lack of a liver and the slicing of each broken muscle.  I fantasized about taking it home with me, wondering how we'd refill it, or even get it in the car.  But it was just a fantasy - not to be.  I had to get off it and I knew that.  I wanted out of there and was thinking home was a good place to be.

The anesthesiologist told me that they would lower it little by little, all day long.  I would still be able to press the button for extra pain meds but the amounts delivered would be smaller.  Depending on how I did, by the end of the night I'd be off it.

"Are you ready?"

I had no choice.  So, at about 10:00 am they dialed it down.  

I didn't notice.

About an hour later, they lowered it some more.  Again, I didn't notice.    That went on until about half way through the day, when the pain increased a bit, and I asked for pain meds, which they gave.  The continued to lower the numbers and I continued to do well, and by 6:00 that evening, I was on nothing.  And, doing fine.  No extra pain, no major suffering.  Like childbirth, I had managed to cut the cord and keep going.

Meeting with the Surgeon

So, nobody has asked the results of my surgery.  You all assumed that because he says it went well right afterwards, that I'm fine now, isn't that true?  You think he meant the cancer was cut out, and I am cured.

I wish.  

I didn't speak to my surgeon for a couple of days after surgery.  In fact, I only saw him twice the whole week (three times if you count the surgery date).  He's clearly very important; it's obvious by the way everybody defers to him, and I only wish I could get people to treat me with that kind of respect and admiration.  The only way it would happen for me at this point in my life is if I killed somebody in a spectacularly gruesome way and my celllies found out about it.

One thing you learn during a catastrophic illness such as stage IV metastatic breast cancer is the limits to medicine.  And, there are so many.  No matter how many imaging tests you have, something can be missed.  You can have strange side effects that can't be diagnosed and even the best doctors can't figure it out.

You normal people tend to think that doctors know it all and the tests are perfect, and we who are very sick find that can be far from the truth, especially as things get more complicated.  Diagnosing breast cancer? Easy.  Diagnosing breathing problems after liver resection when angiograms and x-rays come out clean?  Not so simple.

The plan for me surgically was to cut me open (duh) then the SuperSurgeon was going to visually inspect my liver, looking for cancer any CT/PET scans had missed. (And, the fact that this is a routine part of surgery shows that missing cancer on CTs isn't.)   Then he was going to use a sonogram - right on my actual liver  - to see if there was anything there he couldn't see.  Depending on what he or the sonogram saw, if there were any surprises,  I may or may not have surgery or may have more ablation or less.  If all was as expected, he would remove the left lobe of my liver and burn out the spot of cancer in the right lobe (using microwave ablation).  If he saw something he wasn't expecting, he'd play it by ear.

Fortunately, his ears didn't need to be used.  All my insides were as expected so he did the surgery as he expected.  He told my husband all had gone well, meaning I'd survived the surgery, and he think he got it all, and that was it.

We rejoiced.  I tweeted my cancer-free state.

They take your piece of liver off to pathology, of course, where it's dissected and inspected, and if you are Henrietta Lacks, used for many things.  And, that's where things get a bit nerve-wracking for me. For my doctor came in a few days later and told me that the pathologist had found a spot of cancer on the removed section of liver that they had not seen visually, on CT, or even with the ultrasound right on the liver.  "Fortunately, it's in the part we took out."

Although I would consider myself an optimist, his statement made me immediately wonder what was hiding in the part they didn't take out.  Which, of course, I instantly said aloud.  "If you found hidden cancer in the part you took out, doesn't that mean there could be some in the part you didn't?"  He shrugged.  He's also an optimist.  He said, "The surgery went really well and the spot we found was really small and we got good margins."  He can't know what he can't know.

None of us can, which is the lesson of cancer.

I've been very eager to get back on chemo since that day, obviously.  I hope that they got every spot of cancer, and that I will be cancer-free for the rest of my life, and I will be one of the miracle stories - one of the 2% who survive a diagnosis of metastatic cancer.  It's what I desperately wanted to believe after this surgery.   But there no assurances, and I knew that.  Since he told me about the surprise cancer, I've never been able to "live the dream."    In truth,  I've been negative about it, or realistic, however you want to define it.  I know what cancer is and does.   Basically, at this point, it's a crapshoot as to whether I have cancer in my liver or not.

I have been working on being more positive in trying to believe they got it all out but that is not an easy thing to do when you are a realist.  I even bought myself an encouraging bracelet, with three charms on it: Heal.  Cure.  Prevail.  I look at it when I start to think time is still short for me, when I start to miss the grandchilden I've never had - to remind me that it's just as likely he did get it all and there is no surprise cancer.  I have healed, I am cured, and I have prevailed.

But insurance is good.   I restarted chemo and herceptin on Friday, November 11, after 2 months absent.  I was very ready.  In three months, I'll have another PET/CT.  That will hopefully show a clean liver as the ones I will do every three months from here on out will.  At least, that is what I want to believe.   Only time will tell.

And, finally, weaned off the epidural, eating hospital food ......I got to go home....








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