Thursday, November 24, 2011

Happy Thanksgiving

Surviving a long difficult winter, the Pilgrims - what was left of them anyway - had a feast. 101 men, women and children had arrived to the New World in December, during a winter so harsh that it had killed fully half of them  - only 53 remained.   Despite their grief, in the spring, those who had lost children or parents still planted crops with hopes for their future.  They got advice from Native Americans, who showed them how to use fish as fertilizer.  And, when harvest season came around, they did what Americans do so well, and decided to have a feast. 90 Wampanoag Indians came, bringing deer, fish and other goodies, and the Pilgrims harvested their crops, and together they ate and sang and joined together in celebration of life.  And, I like to think somebody dredged up a pie somewhere.

Or two.

They didn't sit around wailing for all they had lost, complaining about the hardships they had endured.  They took time to gave thanks for what they had and planned to better in the future.  This Thanksgiving holiday, declared by none other than Abraham Lincoln in the middle of the Civil War, is about being grateful in spite of adversity, enjoying and sharing your bounty with the friends who share life with you, and the human ability to look ahead to what is better.

In a way, Thanksgiving is a holiday tailor-made for the cancer patient.  The year was full of struggles and hard times, and not just for me.  Many of us can no longer do the things we used to find easy.  Some have already suffered losses, and some wonder if this is their last Thanksgiving.  Others have completed treatment but now fear cancer will rear its ugly head sometime on the road ahead.   But, here we all are, on a day dedicated to Thanksgiving.  We can take a step back and remind ourselves of all we have still, while enjoying a delicious meal with family and friends and with hope bright for the future, however long that may be.

Happy Thanksgiving Everybody.  Save me a piece of pie.

Wednesday, November 23, 2011

Recovering from Liver Resection Surgery

Thank you all so much for your comments on my article at empowerHER.  The fact that you took the time to comment is every bit as heartwarming as the applause I wrote about was. Now, on to your regularly scheduled posting.

I expected to recover from surgery like a rock star, and that's exactly what I did.  Lots of narcotics, sleeping until noon, hanging out with groupies.

Well, maybe not that last part.

I started to feel guilty.  Very kind people were bringing me delicious foods so I didn't have to cook,  and while it did hurt to stand up, (due to the fact that they seem to have sewn the top of my stomach to the bottom of it, leaving me with the posture of a hunchback) I was feeling so good I knew I could have managed a meal if I'd had to.

I guess I wasn't thinking that I shouldn't be on my feet, even if I could be.

What, me?  Rest?

I had heard that people who have liver resections feel exhaustion like nothing else can cause; that they sleep for hours and days and never feel rested, and that doing something simple like taking a shower takes all their energy for the day.

I scoffed.   That's for other people, not for a diva like me.

Once the pain was gone (on day three) I felt fine.  I was sure I would be going back to work long before my due date of December 5th.  I was thinking somebody should draw a comic book about me.  I could be a  super hero called Recovery Woman. Nothing could keep me down!  In the past, Recovery Woman had gone  furniture shopping four days after an appendectomy and had scars that appeared healed almost before leaving the hospital.   Even though this was the biggest surgery I'd ever have,  I seemed to be following my pattern - miraculous recovery.   As people would come by to check on me,  I was almost embarrassed at how well I was doing.

Then, two weeks after surgery, I crashed.  I suddenly had difficulty breathing  Not acute, not dangerous, just very, very uncomfortable.  I felt very short of breath all the time, like you feel after you blow up balloons, only the party never ends.  The exhaustion hit me, and I slept through alarm clocks - not one alarm clock, and not two, but  three.  I slept like a teenage boy who has an essay due.  I slept like a cat in a sun spot on a windy fall day.  I slept like Snow White after she bit the apple. My sleep was impenetrable by any outside force.  Combine that with my shortness of breath, and my life suddenly became about struggle rather than recovery.

I had my three week post-op with my surgeon, and told him about my shortness of breath.  He did a chest x-ray, which came back "pristine."  We both then assumed I was anemic and my oncologist would check for that.  I soon began chemo again, and told my oncologist about it.  My blood tests were good, and he became alarmed and thought perhaps it was a clot, and so ordered an immediate angiogram, and I wasn't allowed to leave until the results came back.

No clot.

Unfortunately, that meant no diagnosis.

A couple of days ago,  the pain became acute.  It almost feels like I have appendicitis again, only I don't have an appendix anymore, and truthfully, this is much milder.  So far.  It's very low in my abdomen, possibly colon, but it's on both sides.    I just have to live with it and hope it goes away as part of the healing process.  If this pain doesn't go away by next week though, I am going to have to address it.

Aside from this sudden pain, something as strenuous as reading is exhausting and leaves me breathless and dizzy.   I occasionally have to take a big, deep and painful breath, just to get back on track. Talking on the phone - actually, talking, in general, is very difficult.  You can't talk and blow up balloons at the same time.

And, when it rains.......My shoulder had begun hurting me again, and so I went back for another cortisone shot (yes, it's still frozen, and yes, it likely be for the rest of my life at this point - but with cortisone shots I can get pain relief and 75% of my movement back).  I told the PA about the shortness of breath, and he suggested that maybe the diaphragm was inflamed from the surgery.  The diaphragm and liver are right next to each other, and whether that can happen I don't know; whether it would have shown up on the angiogram or the x-ray, I also don't know.  It makes sense to a layman, maybe it wouldn't to a doctor.  But, the acute pain is in the lower abdomen - very low.  So, who knows?

And, because no post by me would be complete without mentioning pee, I seem to have a constant bladder infection  - minus the infection part.  Friends have suggested interstitial cystitis, which makes sense, and I suppose could be causing this lower abdominal pain.  Or not.

So, here I sit in front of my computer, post-surgery.  Breathless, exhausted, needing constant naps, yelping in pain when I pee, needing to pee all day, lower abdomen burning and aching and stabbing me if I move, especially in the classic "put your knee to your chest" position.

All those leftover pain meds from healing so fast? They are almost gone.

After talking to my doctor last week, I decided to take an extra month off work, because I'm not good to anybody right now.   Hopefully, at the very least, I will at least have more energy by January, when I have no choice but to go back or starve.  But, I hope that I feel much better, especially whatever is going on in my lower abdomen.

Aside from all that, I'm grateful I made it through surgery and I've got this chance to get healthy.  Nobody promised me it would be easy, and as it turns out, it isn't.  I'm sure whatever is going on can all be fixed.  It'll just mean more tests, more waiting rooms, more poking.  Pain or no, I think I'll wait until after the holiday.

So, I guess I healed like a rock star  - an aging, overdone, used up rock star.

Friday, November 18, 2011

Finding Support - and Support Me!

I have joined a network for women's health, called "EmpowerHer."  It's a start-up that looks like it could be fantastic way to meet up with others who have your health condition or concerns.  There is already a group for breast cancer, with a nurse who will respond to medical questions, and I intend to participate there and help newbies with my non-medical advice.   I also started a group myself, for metastatic breast cancer patients, so if you have an interest in talking to others with metastatic cancer, either as a patient or caregiver, feel free to join up.   We can talk about anything we want.

Now, my subject line says you can support me, and I know you want to.  So how?   Well, they are running a contest on their site.  I share a story, get the most comments, and the most page views, and I win money.

I like money!

I like money a lot!

So, I wrote you a nice, true, short story,  about what happened to me yesterday when I walked into work for the first time since early October.    It's all heart-wrenching and stuff, and I would have posted it here on my own blog (and added 400 more words probably) but I can't run a contest for myself.

After you read it, please leave a comment about where you found support when you were diagnosed, or how you as a caregiver do something to support your loved one with cancer or anything you want really because it's the most comments, not the best or most relevant.  I think you can leave an anonymous comment, although they won't spam you if you register.

And, thank you in advance for helping me right before Christmas, and for being part of my support network. Because, my blog readers, you are a huge part of my support network.  I am not sure I could do this without you all rooting me on from afar.

Anyway, lots of other bloggers will be entering so let's show everybody my readers are the best!

Thank you!

Monday, November 14, 2011

I Left My Lobe in San Francisco: Liver Resection Story. Going Home

I was weaned off the epidural machine.  I was eating delicious foods such as orange jello and pea soup. I was walking myself to the bathroom,  and my pain level was only a 2 or 3.

It was Saturday, October 8th, and it was time to go home.

There was one more hurdle to get through, and that was the drive from San Francisco to Sacramento. Now, I don't want to make this a political blog, but let's just say our legislature, probably like yours,  has found many things to spend our tax dollars on that they believe are more important than improving crumbling roads.  As an example, they are allocating several billion dollars on this new, super-modern technology (a train), which is designed to get people from one part of California that nobody goes to, to another part of California that nobody goes to.  Fixing the roads between the biggest city in California and the Capitol of the state is not important compared to laying tracks from Bakersfield to Palmdale.

Hey, those cows need something to look at.

In short, our freeways are in deplorable shape. In the 100 miles between the hospital and my house, there are 877,423 bumps in the road.  And, those are the large ones.

I know.  I counted.

On the way there.

Why?  I was terrified of coming home and had been from the beginning.  Who wouldn't be?  In my condition, I  could go over one of California's legendary potholes, hit a large bump,  my stitches could slam open and my guts spill out, right onto my lap.

My favorite show in the world right now is the Walking Dead.  But, I like it from the comfort of my couch, with its gore causing my stomach to churn, from inside my skin, where it belongs.

I was not the only one afraid of the ride home.  My husband was also quite nervous.  Let's just say we have the same relationship that your grandparents had.  He doesn't drive the right way, and I tell him so.  So he knew he was going to have to hear about each one of the 877,423 bumps, and be told 877,423 times that he should take them smoother.

And he was, of course, right.

For once.

To protect us both, like you all would, I made a plan.  In the trunk of my husband's car there were a bunch of pillows I'd brought from home to prop myself up and protect myself from California's neglect.   I also brought one of those foam mattress pads - you know the kind with the eggshell bumps everywhere?  I figured I could line the back seat with that, prop myself with pillows and soften some of the major bumps and maybe even take a nap.  At the very least, I could flip through a magazine and try to ignore what was going on from my padded cell.

But, that wasn't all.  For the rest of the plan to work, I needed an accomplice: my nurse.  What I wanted to do was get my final shot of dilaudid and take a valium right before I was released.  Since the shot is supposed to last two hours and the valium seemed to relax me for at least that, I figured I could avoid the pain of the ride entirely by being drugged.

Hell, why not?  Half of Californians do it.

The nurse, whose name I forget but who was with me for three days, thought I was being a bit silly but she got on board.  She'd been absolutely wonderful the entire time and the instant I remember her name I will send her a thank you card.  Anyway, she either had never driven across California or thought I was a wimp (or both), but she readily agreed to my plan.  I was still allowed to have medication, so why not?

It sometimes seems checkout in the hospital is endless, but they have it down to a science at UCSF and the entire thing took less than an hour.  In fact, they came in to remove my IV, and I had to ask them to wait as I wanted to use it one more time for the medicine.

Now, you have heard a lot about pee in my little hospital saga and I am afraid I'm going to give you one more squirt.  If you haven't been squeamish or Miss Mannerish about this so far, this one won't bug you.  But, if you have shaken your head and said, 'Ann, you are being very undignified," than I suggest you skip the next few paragraphs.

Getting ready for a two hour car ride means you use the rest room.  Even though I was being released, I was still using the measuring cup they slip inside the toilet, so I sat properly and did my thing, no problems anymore.  And, when I saw what I left inside the cup, visions of the Walking Dead came floating back to my mind.  Inside that cup was a brown liquid. Not a light, yellow brown.  But a deep, gritty brown, with chunks in it.  Like dirt mixed with sand mixed with danger.

I was shocked.  What the hell was that?  Did that come out of me?  Were they doing construction somewhere and dirty stuff from pipes spilled into the cup?  I actually looked up to see if there was a leak above my head.   Were pieces of what was left of my liver breaking off and coming through my urethra?

Was that something that was going to prevent me from going home?    Oh no!  As afraid of the car ride as I was, I wanted out of the hospital!  Yes, I expected a difficult two hours, but after that, I would be sleeping in my own bed, petting my own dog, hugging my own sons (who had left days ago) and be in my own, comforting environment.

Now what?  Do I tell somebody?  Do I leave it there for them to notice after I am released and they are cleaning the room?

What would they think that was?  Would they call me back?

The nurse came in to tell me that a doctor was on her way in to remove my staples and put on tape to hold me closed.  I shamefully told her about the brown, gritty pee.

She didn't seem to care. She said she'd look at it later.

Shortly, a med student came in with a staple remover, and I gallantly tried again.  She also didn't care.  Perhaps looking at coffee-colored pee is above their pay grades, or maybe they just wanted me out of there.

I didn't think I'd been that bad.

But, I knew they wouldn't let me die, or pee out my remaining liver in chunks, even if I had been annoying.  It apparently wasn't an emergency, and I was clearly going home - so I forgot the pee and went back to worrying about the trip.

After I had a thousand pieces of tape placed on me in lieu of staples (that med student was definitely an over-achiever and a 7.5 earthquake wasn't going to open me up now) the nurse came back in, gave me my Valium, my shot of Dilaudid, took out my IV and wished me well.  I thanked her for her compassionate care,  and my husband went to pull the car around.  I gathered my things and a few minutes later, the transport person with the wheelchair showed up, and I was off.

I was impressed.  My husband had done a fantastic job of lining the backseat with the mattress pad and pillows, but being a woman, I changed my mind.   I felt well enough to sit up straight and wanted to be in front.  So, we grabbed some pillows, and I got in the car.

As we started driving through the city of San Francisco, the meds kicked in, and I began to doze off.  Soon, I was fast asleep.   At one point, we crossed from one interchange to another which had a large bump, and as we went over it, I woke up and said, "Ooohhhhhh" and then fell right back to sleep.

And, I slept pretty much until my husband pulled into our driveway.  I had made one moan in 100 miles and 877,423 bumps, and that was it.

My plan had worked beautifully.

Pillows plus drugs equals no guts on the lap and no nagging of the husband.  What could be better?

Well, yellow pee could be better.

Which is what happened when I got home. Whew.

.  Thank you for "liking" me on facebook.  Keep it up!

Sunday, November 13, 2011

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....

Don't forget to "like" me on facebook.  I'm getting closer to my goal!

Thursday, November 10, 2011

I Left My Lobe in San Francisco: Liver Resection Hospitalization - Vignette 3&4

The Cancer Card

Having surgery outside of your own city brings up several logistical problems, not the least of which is lodging.  Hotel rooms in San Franciso are not inexpensive to begin with, and one problem we encountered when trying to make reservations for our family was the fact that there were several conferences taking place that week - large ones, taking up over 60,000 hotel rooms.  One was Oracle World, a geek fest extravaganza.  The other was Fleet Week, a macho man hunkival.   The city, and more importantly, its hotel rooms, were completely filled with studs and nerds.

Liberal as San Francisco may be, there is still a shocking capitalistic side to it - all of the available rooms had quadrupled in rate.

UCSF has a  recommended hotel section of its website, and most were listed in the very low $65.00 - $99.00 range which would be cheap, even for Sacramento. With rates like that, they really are doing hospital patients a favor.

But, not during Floricle.

Every place on that list I called was $400.00.  Or more.  A night.  I expanded out from the recommendations, and all quotes were in the same range.   And, I'm talking calling your crappy Motel 6 type places, not your luxury Top of the Mark hotels.  At first, I'd just call and ask about rates. When I kept hearing $400.00, over and over, I realized I'd have to try a new tactic: playing the Cancer Card.  So, I'd call and say, "Hello, my name is Ann, and I have breast cancer that has spread to the liver.  I'll be staying at UCSF so they can take half my liver out and I need a place for my family to stay for the week - you were recommended by the hospital.  Do you have a room?"

Hey, the hospital linked to them, they should have some empathy, right?  A special rate (or a normal rate) for a patient?

The answer, despite my sob story, didn't change.  It was either, "sorry, we are booked" or "yes, we have a room for $400.00 a night, would you like it?   Even when I said, "But it says $70.00 on UCSF's website," I could hear the shrug over the phone.  "It's Fleet Week and Oracle World, the entire city is booked."

Wait, I take it back, the story did change:  some people added "I'm sorry, good luck to you," after they tried to get into my wallet.  Most just hung up when I said I couldn't afford it.

I had two fall-backs.  First, I knew the hospital had a social worker and thought she may have had some ideas. Second, my step-daughter just bought a house in South San Francisco.  I knew that she'd be fine if we descended on her.  I hesitated because I knew I would have to take up an entire bathroom the night before surgery, and I also wanted to be closer to the hospital.  Plus, with my sister, my two sons and my son's girlfriend, it just seemed like too much of an imposition, especially staying for an entire week. She has a demanding job as a middle school teacher; she doesn't need people sleeping all over her house and hogging her bathroom.

But, it was in my back pocket in case I had to use it.

After dozens of phone calls, in despair, I shared my dilemma with a friend, who mentioned he'd stayed at the Cow Hollow Motor Inn and thought it was serviceable. I called them, and discovered - to my astonishment - they had not jacked up their rates and were even located in the heart of the city, on Lombard Street.  I immediately booked it.  Now, I am not going to say it was cheap - it wasn't.  It was $130.00 a night, and that price didn't include luxury (it did include the smell of grease).  But, it was clean and safe, and every staff member was extremely nice.  The price gave me motive to get better so my husband could check-out, but it wasn't so high that I felt the need to leave the hospital and endanger myself.

The moral of the story is:  sometimes, playing the cancer card doesn't work, even when the place you go to cure cancer recommends you play it.

(In fact, most of the time that card doesn't work, I really need to stop trying to pull it out.)

 My Windows

As I said before, the view in my room was truly spectacular. There were a bank of windows, beginning in the bathroom (I didn't know that for a few days) stretching across to the other side.  The entire City of San Francisco was displayed below like the sparkling jewel it is.

The photos I took didn't do it justice, not surprising considering they were taken by a woman cut wide open, sewn back together again, and lying flat on her back in a hospital bed.  I tried to get my husband to take one, but every time he touches my iPhone, his hands shake - probably because he pays the bill.  Trust me when I say that everybody who came in commented on the view - in most cases, before they commented on me. I'm surprised nobody brought it flowers.   So many doctors walked in, never having seen the room before, and said, "Wow, look at that!" and they were not talking about my scar.

Which, by the way, is worth a comment or two.   Or even flowers.

When you think about it, it's surprising that room is actually a hospital room.  Although it's small, you'd think it would be the hospital boss's office, or a hideaway for his trysts, or a small conference room for heads of various departments.  It could be rented it out for parties, or even become a small but very expensive San Francisco studio apartment -  the view is that great.  And, nobody would ever have to worry about getting sick living there.  Because it had two sets of doors, it was extremely quiet - I heard no hospital noise at all.  I have no doubt at all that my peaceful, pretty room contributed to my fast healing. Having privacy and a beautiful view - what more could you want?

Maybe some entertainment?

See the two spots sort of to the left?  It's not dirt on your monitor - it's the Blue Angel's Aircraft
Well, we got some amazing and unexpected entertainment, from an unlikely source.  Because it was Fleet Week, the Blue Angels were in town.   And, they, like all other entertainers, have to practice.  So, every day at about 11:00, we were treated to the Blue Angels learning the skies and landmarks of San Francisco.  We'd hear a roar, and then see an aircraft go straight up, streaming smoke behind it.  Then two would go by and then part,  going their separate ways, contrails flowing behind them.  Once, they flew up then crossed, making a cloud heart.  A time or two they roared right over the top of the hospital, demonstrating precision flying by tipping their wings in unison, only inches from each other.  It was all pretty spectacular and a thrilling way to take my mind of myself.

Being a social sort, I invited everybody in for a party.  "Hey, the Blue Angels will be practicing at 1:00, come back in," I'd tell the cleaning folks, the nursing staff, the doctors.  I didn't have anything available to make it a real party - some leftover jello and a tea packet or two - and I wasn't sharing my dilaudid - but who cares?  It was the Blue Angels!  Several people did come by, stare out the window for a few minutes, then go about their business.  They work hard at UCSF.

The real show was Saturday, the morning we were leaving, so practice was all we'd get to see.  Their dry runs were so impressive,  I can only imagine what the real thing looked like.  After I checked out, I hope they managed to clean out my room and put another patient in there early enough so they could enjoy the spectacle.

It was very special to be able to see America's best and brightest share their talent in the skies during my recovery. As I saw the astounding tricks that must have taken tens of thousands of hours to learn, thinking about the dedication of those skilled pilots, I realized that inside the hospital the same kind of dedication was going on.  The surgeon who took the chance and went against protocol to remove cancer from my liver, who spent decades honing his skill, who flew off in a different direction than the rest of his class by doing this surgery - what he did was every bit as beautiful as what the Blue Angels did.

I felt very lucky to be among the most skilled people in the world.

Happy Veteran's Day to all our remarkable service men and women.

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Monday, November 7, 2011

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!

Sunday, November 6, 2011

I Left My Lobe in San Francisco: Liver Resection Story. Family

I know it's been a while since I wrote.  I recovered, and started puttering around the house- too busy to post. Then I had a set-back and it now is very hard to write.   But, I'm going to ignore my discomfort as I know many of you are getting freaked.  And, being the a-z creature I am, I'll continue where I left off

Back on Mickey's Hospital Land Ride, I was pushed down a corridor, where I groggily passed a pretty woman. She said "hi" to me and I said "hi" back. Her hair was up and I thought she was a nurse who was going to help take me to my room - then suddenly I realized that beautiful woman was my sister! I smiled big and said, "Oh hi!"

I think for a second she thought I'd had a stroke or something for not recognizing her.

I was right though, she was going with me to my room, as was the rest of my family; my husband and my two boys - they all surrounded my bed like little satellites.

What would life be like without family to help you through your worst moments?

As hard as the day had been for me, I knew it had been harder for my family. I'd slept through most of it, and I was getting dialudid to help me cope with being awake. They were not so lucky.

They had spent most of the day in a hospital waiting room, with no news about my condition. Even when they got news that I was okay it was many more hours before they could see me.

Everybody had taken time off work and school - my sister had come 600 miles for what she knew in advance would be a bad experience, even a nightmarish one. We had to take my son out of school, and he's one of those super-star students who is tortured by missing school.  (When I was in high school I'd have gladly had everybody in my family have surgery if I could miss one day, and in fact, contemplated making that happen.)

I was comforted knowing they were there, and it's not lost on me that they put aside their discomfort to be there for me.  I can only imagine what they went through during the 12 hours I was unavailable to them.

Collectively, me on a gurney and them surrounding me, we went through a set of double-doors into an air-lock type area with a laundry bin, and then through another set of double-doors to my room. As we walked through, the nurse told me my room was on the 13th floor and I was in Room 1331, and said, "I hope you aren't superstitious."

Nope. You could name my room, 666 Malpractice Death Wing, and I'd be fine as long as it was a private room.

It was dark, and all I saw were a bank of windows, black as night. The nurse told me that you could see the lights of the city,  but without my contacts, I wasn't impressed. I was impressed by the fact that there was only one bed in that room.

That first night is pretty fuzzy. I don't remember how long my family stayed or much of anything that happened. I know my sister spent the night with me one night, but not the first.   The large doses of painkillers I was getting, combined with recent anesthesia created a dream-like situation. I think my exhausted family left as soon as they saw I was settled in. I do remember at one point in the middle of the night nurses and rads techs came to take a chest x-ray and that hurt as they had to roll me on my side to get the board under me. I don't recall asking for pain meds - but I'm sure I did   I don't recall pushing the button on my epidural for extra doses -  but I'm sure I did. It was probably a bad night but I honestly don't remember now.

Morning dawned, and I realized I not only had a private room, I had one with an incredible view. I was now not only happy with the room, I was bragging!

I had a sweeping, panoramic view of San Francisco, from the TransAmerica Building all the way to the Golden Gate Bridge. It was spectacular, and all mine.  I grabbed my iphone and ignored the extreme and searing pain to tweet that view, and shame on you who aren't following me @butdocihatepink

Unbelievably, the day after my surgery -the surgery where I was flayed from mid-chestbone to belly button and across to my waist - AND had half my liver removed and burned - the sadistic nurses wanted me standing up. On my feet!  With a catheter bag dangling down.  Well, I don't have to tell you that was quite painful, and they didn't want me to just stand, they wanted me to move my legs back and forth. I lost my footing and sat down back to bed, suddenly (ouch) but got up to try again because I'm super brave and all that BS. (The sooner you do it, the sooner they leave).  The second time I managed to do the Hustle as requested, then I got a sponge bath and went back to bed.

I felt better after getting up, hard as it was.   If you have found this blog because you are having a liver resection, don't resist standing up.  It jump starts your recovery.

They also gave me an inspiration spirometer to practice breathing - it helps prevent pneumonia. I was to practice it once an hour and get the little ball to a line she drew.   I'm pretty sure I didn't do it once an hour - it  wasn't that inspiring -  but I did it several times a day. I never did meet my goal, however.

I'm not sure I could meet it now, but that's a different story.