Dancing with NED

Women with breast cancer have an expression:  they want to "dance with Ned."  Ned, for my young friends, is an old-fashioned name like Elmer or Chester that will probably never become stylish again. Yet, for those of us with breast cancer, it is still the sweetest name on the planet.  It stands for No Evidence of Disease.

Most women (and men) with early stage cancer become NED as soon as their surgery is completed. Even if they have chemo, it is preventative in nature, an extra dollop of treatment, just in case a cancer cell is floating around where it shouldn't be.  With today's statistics (which don't include the new treatments) approximately 75% will stay cancer-free for the rest of their lives. Those 75% experience a clinical cure, although the tricky thing is they don't know it, and that's why you will hear a Stage 1 women say,  "there is no such thing as a cure for breast cancer." They are wrong and right at the same time. They may be cured, but until they take their last breath, dying of old age, they can never be sure they are in that group.  Since cancer can return at any time, (hence the other 25%,) the only word for their situation is NED.

This means that people who've had early stage breast cancer live guarded lives. Knowing the chance for recurrence is there, they examine every ache and pain.  "Is this the throb that means cancer has come back?"  It helps to understand that the longer you live, the less likely cancer will return, that the statistics are old and don't include newer therapies - but worry comes with the cancer territory. The major goal of early stage patients past treatment is to learn how to live good lives, even with uncertainty.

They must train themselves to thrive with ambiguity and not let anxiety take hold. That is the lesson of their disease.

But those of us who are metastatic?  We know the end.  We have plenty to worry about, but cancer returning is not one of those things.  That already happened.  Conventional wisdom states that metastatic cancer is incurable.  Our goal is to live day-by-day and love life, even when diminished or sick, without imagining a future.  A goal I feel I have managed fairly successfully.

Early on, when I was chosen for a liver resection, I believed I could end up NED, but since cancer returned after the surgery, that hope was gone.  Statistically, I was following the same course as all with mets do.  Progression.

When I heard that I was getting this surgery, I had a bracelet made for myself, that said "Heal.  Cure.  Prevail."  It was to remind myself I had a future.  I was so disappointed at the relapse I took my bracelet off.  Now,  I only wished that my disease would remain stable and not take over and spread like wildfire through my body until my son graduated high school.

I made that graduation.  And, so much more.

I'm dancing.  I had a PET scan earlier this month, and a doctor's appointment a few days ago that confirmed that disease is not visible.

Did you hear that?  In case you didn't:  

I'm NED!

My bracelet is back on.

Everyone is thrilled. My implacable doctor was happy, my nurses hugged me, an assistant cried. My radiation oncologist's assistant just called me today.  I unfortunately missed the call, but her voicemail was sweet. She sounded thrilled as she said that it looked like the only place we'd be seeing each other again was the grocery store.

I'm a happy surprise rarely seen in this world of progression and death that they deal with every day.

Those of you who have seen me dance know that I stumble, trip, and jerk like a Elaine on Seinfeld episode. Awkward would be the kindest word for my dance moves, and yet, Ned asked me, of all the deserving people out there, to bust a move with him. Right now, I feel as graceful as a prima ballerina.

I'm Metastatic.  And, I"m NED.  Rare, beautiful and incredible.

Who knows who long this lasts? Maybe, just maybe, I can be like the early stage gals and get remission forever.  Maybe, like I posted about long ago in more wishful times, there is a chance to cure metastatic cancer.

More realistically, this is a lovely pause in the course of my disease.  One has to be sensible.  This disease could come raging back.   But it might not for a good while.  We all hear those stories about women who live ten, fifteen, even seventeen years with mets.  They are rare, but they exist, and perhaps I will join their ranks.  Perhaps I will join the ranks of the unstudied, the unknown, and die in my 80s, of old age.

Now, like the early stage women, there is an element of uncertainty to the course of my disease. Unlike them, I love it and welcome it with open arms.

I will remain on Herceptin and Perjeta for the near future.  But I have joined the land of the living. I can plan for months into the future, I can work on getting my body in better shape, and many other things that I'd not thought about in five years.  It would be jumping the gun to say I am able to imagine college graduations or weddings or grandchildren still long in the future.  I can't think that way again - something stops me.  And, maybe I never will be able to again.  Maybe I should never try.  That way leads to heartache and there are zero studies showing that women can live a normal lifespan with metastatic breast cancer. But certainly, as my brain adjusted to living life in 3 month increments and not having a future, it will adjust to being able to plan a bit farther ahead.

I already have.  However long I get in remission, dancing with Ned, you can believe I am going to make the most of it.  Now is the time to work on my bucket list, before cancer does come back and I get sick again.  I've been given a reprieve, and I'm going to enjoy life to the fullest, as much as I can afford to do.  I've already scheduled a trip to see my best friend in Utah - it's been 13 years since I've been out there.  I'm planning a small California vacation before my son goes off to college, including visiting my grandbaby, taking my son to see the Mystery Spot, and mostly taking the city of Solvang up on an invitation to visit with them.  I have always wanted to go there and see that charming little Danish town plopped in the middle of California.

I don't have the money for luxury trips; never have.  I have a child starting college which is going to take all of my small inheritance from my father's death and what I've managed to collect in my Paypal account from you kind people,  and that's as it should be.  I don't need luxury or Europe. As I've learned, being with friends and family is the luxury, whether it's home in California or the turquoise waters of Tahiti.  

I have pain.  I am still tired.  I have been through a lot.  My nerves have been damaged, my shoulder has never healed.  My stomach muscles are painful and weak, many positions cause cramping.  I can't eat without pain.  There have been too many surgeries.

And I could not be happier.

My doctor said to me, "Now that you don't have cancer, I want you to weigh 100 pounds."

"Now that you don't have cancer."  From an oncologist.  Wow.

I'll do what he says.  Eating more is my next goal.  Finding a yoga group for those of us left in pain or disabled is also on the agenda.  (Sacramentans, let me know of one)  Eventually, I will be try to get off the pain meds.  I still need them - but there is no cancer.  Will I always?  Do I have a problem?  Will this turn into an addiction blog?

I am not going to worry that cancer will return.  The lesson that metastatic cancer taught me is to live for today and enjoy this moment.  Tomorrow is a dream that may never come.  But now, I can at least think about short term plans.  

And, that is exactly what I will do.

Starting with this dance.



Pause or miracle?  Either one, I'll take it.

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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