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....








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7 comments:

  1. I really do believe that your cancer is gone, I believe 100%. You need to as well. There is no cancer left in your liver. xoxoxo Susan Kranyik

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  2. I have never heard of that shaking bed. I couldn't stand it if I tried... But glad you got to go home. I am sending cancer free thoughts your way.

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  3. Thank you Susan and Caroline.

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  4. Ann - I don't know what to say because I am also a realist. All I know is that it sounds like you have done absolutely everything possible to rid yourself of cancer. Just try to hang on to the hope that they got it all during surgery and that your chemo will get any stray cells lurking around in your body. Honestly, Ann - that's all any of us can do - even me. I am Stage II with a lymph node tumor. My cancer was detected early. There are still no guarantees (which I know you know). I am hoping they got it all in surgery and I am hoping my chemo is getting anything left behind.

    I guess it's all about hope.

    Hang in there - hang on to hope.

    xo,
    Jen

    PS. And thanks for stopping by my blog. It means a lot to me given all the crap you have been through.

    PPS. And I can TOTALLY relate to the inflating bed and water wings on your legs. HATE those! :-)

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  5. Jen, the odds are with you so don't let what happened to me freak you out. Women who are stage II don't often end up Stage IV. Although, it can happen so you have to be aware of it, which is where your realism comes in. But, don't be too real, it's a lot better to go with the 75% odds or whatever it is for you. :)

    When you are done with treatment, that's when your real struggle comes in. I know a lot of women who worry about the end of treatment and it can take a couple of years to believe you can end up with a healthy, normal life. Sometimes I think it's even easier on me, knowing I have Stage IV, rather than worrying about it for years as some friends do. Good luck to you and if I will do a link exchange with you.

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  6. Ann, In 1986 Sid had a Clarks 4 melanoma on his right shoulder removed. The Dr told us they Think they got it all. We decided to live as if they did. Was it easy no but what choice have come along that make me beleive that they did get it all and you will be with us for a did we really have. Since 1986 many advances long, long time.

    Judi

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  7. Very sorry to hear of your difficult situation. Thought you might want to read this blog of another women in a similiar situation. My wife just a double masectomy do I sympathize.
    God bless you.

    http://alrighttit.blogspot.com/

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