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.

Pomp and Circumstance

The day dawned bright.  Far too bright.  Is this what 8:00 a.m. looks like? I'd forgotten.  I have not seen the sun in this position in the sky since I'd left my beloved job. I'd cleverly managed to schedule all of my doctor's appointments, scans, infusions, blood tests - whatever they wanted to do to me - in the afternoon, the later the better.  The only time I'd been up before 10:00 *cough 11:00 cough* was a surgery day, and those are usually scheduled before dawn. Apparently, surgeons like to cut you open before sunrise. Or at least, they schedule you before dawn.  Then they have their coffee, their bagels, chat up other doctors and nurses and finally turn to you, starving and grouchy, at about noon.  I suspect the trick is to get you mad, so you substitute anger for fear.

Good plan.

Anyway, getting up at 8:00 a.m after my previous cramp-filled day sounded difficult but having been ill turned out to be a blessing in disguise.   Because I'd slept/rested most of the day before, it was not the struggle it would have been otherwise.

Ritalin helps too.

I dressed quickly, in a top I'd bought for the occasion.  At first, I was going to wear a coral top and white pants, but my son's graduation gown is red, so I had to switch.  In healthier days, I was a fashionista, and then cancer made me a pajamaista.  Now, health restored,  I care about clothes again.  Amazingly, even having been through hell and back, you do not rise above wanting to look good. Only now getting dressed is limited to special occasions; PJs are too comfy to give up.

We had a silly gift and balloons waiting for my son, which he enjoyed.  A couple of his friends came over, all very happy and excited and joking the way teens do.  The graduation rehearsal was downtown at 10:00 a.m. and we were the chauffeurs for parents who had to work. We were happy to do that - one of the kids had been my son's friend since 4th grade and it seemed fitting to escort him to graduation.   Seeing these young men, happy, laughing, ready to start their lives - well, it's a beautiful thing and one of life's lasting memories.

Because the kids had to be back at the Memorial Auditorium at 1:00 pm and parking is difficult, we decided to stay for the day.  We stood outside, the crowd of teens milling about nearly glowing with happiness.  It was a formal event and all the kids cooperated. Some of the girls were in towering, five inch heels,  glittering as if they were competing with the sun.  Many struggled with the height of their shoes and walked in the stilted way of flamingos stepping over a puddle.  The boys were all tugging on their ties and stretching their necks, hoping to relieve the noose-like tension.   They were led in to rehearse and my little pack avoided the heat and followed in to watch.  

Rehearsal over, we had an hour and a half to eat.  We handed our son a $20 and the boys went off on their own in search of food,  as boys tend to do. My husband and I found my sister, who flew up from Southern California for the event.   We later caught up with my older son's girlfriend and had a light lunch.  My oldest son, ever responsible and hard-working, was unable to get the day off work from his job. Sacramento was in the middle of a heat wave and he repairs HVAC units.

After lunch, I received a text from the High School Secretary, the women who took my job when I left (and sadly did so well that nobody missed me), telling me we could come inside early as there were seats waiting for me.

Let me backtrack a bit:  Part of my old job duties included helping out at graduation, which I enjoyed tremendously.  It's always a fun and happy event, if a bit chaotic.  I set things up, assisted the kids as they got ready, and then handed out diplomas at the end.  Because I worked for the school my son attended, I had often joked about setting myself a seat on the stage when it was his turn to graduate.  When I had to quit in his sophomore year, everybody promised me that a good seat would be awaiting me at his graduation, and they kept their word.  We had seats saved for us, right up front and with a great view of the stage.  I am very grateful to everybody at MLHS for remembering my wish and following through.   Not only was I able to be there for my son's graduation - I was able to see it.

As we settled in our wonderful seats I instantly started to cry.  You know me, I don't do that. Tears are not part of my normal vocabulary.   But I became very emotional. This moment was the pinnacle of all I'd been through, all I had endured. And, make no mistake, while my recounting of my life has been more light-hearted than not, there were moments of great pain, fear, worry and suffering.  But through it all, my imagination focused on this graduation.  I thought of it when I was in intensive care near death with sepsis. I thought of it through many a chemo infusion.  I thought of it as radioactive beams shot through my liver.   In my imagination, I was sometimes watching the ceremony in a wheelchair, or bald, exhausted, weighing 80 pounds.  I thought of it even as the last thing I did. But always, I was there.  My goal was this graduation.   And so there I sat on this long-awaited day, air-conditioning blowing my shoulder length hair, dressed well and looking healthy, former coworkers around giving me hugs, congratulating me.  I sat there,  feeling fine and healthy and just like any other mom in the room.  And, no doubt like the other moms, the tears flowed, happy for myself, for my son.

I did it.

He did it.

We did it.

I had lots of help along the way.  My oncologist, my surgeons, my radiation oncologist, my nurses, everybody who works in the office to get my prescriptions on time, to make my schedule, collect my blood, make appointments.  The researchers who came up with Herceptin and Perjeta, the people in the trials, the insurance company that allowed me to receive it.  My husband who did all the driving and cooking, my friends who brought me food and sent me cards and kept my spirits up whether they knew I needed it or not, and you, my dear online friends, who have commented and encouraged me.   Nobody walks this path alone.

All of that went through my head as the tears streamed down - how very connected we all are.

We did it.

Like the students who were about to walk down the aisle, two by two, nobody does anything alone.  They called each other for forgotten notes, worked on assignments together, supported each other in quests for success. Their incredible teachers shared knowledge, their administrators made sure everything runs right, the custodian made sure the school is sanitary and functioning.  And, of course, parents provided help for their own kids and the children of others: supplies and meals and rides and cookies.  Everybody has a role in each other's lives that was finalized in this moment of triumph.

Among the joy was sadness.  Two of the students in the class of 2014 did not make it to graduation.   As they were acknowledged and remembered, everybody was solemn and at that moment, I knew I was not the only one understanding how precious life can be.  For a moment, we all shared that realization, that vibrant young lives can be snuffed out, that the future is promised to nobody.

But life is for the living. The music started to play and the kids..... no, the young men and women started to walk, red gowns flowing, I became even more glad I wore waterproof mascara. But there are 360 students and one can't cry forever, so I stopped and began to really enjoy it, snapping pictures, waving to people I knew, smiling at the grads, nudging my husband as my son was acknowledged as a Valedictorian.

Another aside:  There was a camera crew there doing a story on me and my son.   Lindsay, the reporter, had interviewed my son and the Science Bowl team.   When I retweeted her article, she noticed that I had more followers than the average mom, and reporter-like, she looked me up and discovered this graduation had been my goal.  So she asked to do a story, and after talking to her and finding her lovely,  I said yes.  I always want to represent the metsters of this world, and show that not all in breast cancer world is pink and pretty, and yet there is hope for all of us, end-stage cancer or not.

And it went as high school graduations across the country do.  Pomp and Circumstance, students on the cusp of adulthood walking together, a touching and funny graduation speech, pride for their class displayed.   Then their names are called, they walk across the stage, shake hands with administrators as people cheer.  They go back to their seat, then at the right moment, move their tassels, cheer, and enter the world of adulthood.

They did it.

We came home, and he opened gifts we gave him, and he got ready to go to grad parties.  (Which continue to this day.)

And, as life is wont to do, it threw a little stink bomb at us, reminding us that perfection is illusive. As my husband and I sat relaxing, watching TV, my son off at an all-night grad party, a smell wafted in.  "Oh, there is a skunk in the neighborhood," I thought.  Then it got stronger and stronger and stronger.....and pretty soon my eyes were watering once again.  The smell of skunk was overpowering, and sleep became impossible.  I thought it had let its noxious spray go under the house, it was that close and strong.  I lit candles and tried to rest in my son's room, because he has fans going everywhere.  It was a fitful sleep at best.

The next day, we found a dead skunk in our backyard.   And, our dogs also found it, so out came the peroxide, baking soda, and dishwashing liquid for me and the hounds.  My husband got the shovel and the plastic bag.

These kids will go off to college or to work.  They will have loves and heartbreaks, they will live lives of routine or adventure or a little of both. They will start careers, change their minds, start new ones. There will be happy days and skunk-filled nights.   Some will even get cancer, or their parents or loved ones will.

Life will go on for them, and, for a while longer, me.

I will not set any more goals.  If this experience has taught me anything, it is the importance of living for today and enjoying the moments that you have. Anything else is just a dream.  Dreams can lead to wonderful days, full of joy.  They can also lead to heartbreak.  It is in the small moments that I found the real meaning in life.  Watching a hummingbird feed on a flower, hearing the laughter of children playing, reading a good book, seeing a baby smile, taking a hot bath.  Those are the things that I will live for now.  Anything else is extra, and I'll take it as it comes, whatever it may be.  Life, however long I am given, will be welcomed with open arms, skunks and all.  But no more goals to set.  I am at peace.

I did it.

Graduation Day - Part One

When I was told in May 2011 that I had metastatic cancer in my liver, my heart chilled. Not because I was going to die, because after all, we all are.  But because it was likely to happen before my youngest was raised. My job would not be completed, and that was horrifying to me.

My oldest son is doing well in his chosen career and has a serious girlfriend and is living life as an adult; he's raised.  But my younger son?  Still a kid.  He was on his way to academic success - would grief cause him missteps?  How could I be the cause of that?   While my doctor never put an end date on me, life did, and the internet did, and three years was the number that came up over and over.  I saw it in action, on forums and with women I'd come to know.  The liver metsters - not always, not all of them,  but often enough - they were gone by the three year mark.

So I set a goal.  My son's graduation, three years in the future, was the shining ruby I wanted to pick up on this crumbling yellow-brick road I'd been forced to walk. I was going to do everything in my power to get there.

High School Graduation is an important milestone, not only for the child, but for parents.  The ceremony is the culmination of that day long ago when, tears clinging to lashes, you let go of your child's hand, released him to the care of the kindergarten teacher, and allowed him to begin navigating the world without you.  By high school graduation, the process of letting go should complete.

Parents, that diploma is as much for you as it is for your child.

During elementary years, they need your help in many ways - with social situations, with teachers, with homework and projects.  You teach them how to handle time, how to behave even when they feel life is treating them poorly. You help them learn other people have perspectives that differ, you kiss their boo-boos and help them get up again.  You put things in front of them:  piano lessons, baseball, paint, dance, and you see which thing takes. When one does, you start driving.

They start high school as freshman, self-centered and needy, still very much kids.  By senior year these towering hulks or lovely young women should be able to navigate the world of humans who have different needs and ideas with maturity and grace.  They will have had teachers with a variety of expectations and personalities and the coddling of the younger years are over.  High school is the time they understand how to satisfy obligations from many areas, just as it will be in their work life. Your role is now to step back and let them handle it, supportive with advice, but distant.

They should be able to handle their finances and manage to put gas in the car and understand that if rent is due on the first you don't buy that new video game on the 30th.  And that, once in a while, the toilet has to be scrubbed.

And if you have boys, the floor too.

If you have taught them to do all that, if your kids are on that path, able to handle the basics of life, then they are ready to choose one of the myriad branches that will soon appear in front of them and walk it with confidence - and alone.  In our culture you have successfully done the most important job in the world.  You've raised your children.

Looking back, it was a long, arduous three years for me.  I had to quit the job I loved.  I've had hundreds of sessions of various chemotherapy drugs, many dozen scans, more time in doctors appointments than with friends, major surgeries, powerful radiotherapy.  I suffered c-diff and sepsis that nearly did me in - days and days of being too sick to get out of bed.  There were hospitalizations and medications and pain.   I tried to make dinners and go to school events and back to school nights and take my son to practices.  Many times my husband had to do those things alone, but I was still there, encouraging, asking questions, supporting my son's goals, even if I physically wasn't able to do all I wanted.  We would have conversations about what he was doing in school, me in bed, him standing at the foot.  I may not have been able to go with him, but he knew I was there in spirit.

And my son, he did everything he was supposed to do and far more.  He got a 4.68 GPA in one of the most rigorous schools in California - he's a valedictory scholar, won the National Science Bowl contest, has been honored by the California Legislature, plus he has many friends and a good social life. He has hobbies he enjoys,  and is kind and respectful.  He's a well-rounded kid with dreams for the future which start next year at Caltech.

And, he makes a mean omelet.

We're still working on the toilet.

Together, we both did our parts, and the culmination of our separate goals was this wonderful day, Graduation Day, June 5th, 2014.

It hadn't started well.  The day before, I became ill.  I will never know what it was, disease or something I ate, (and considering how little I eat that would be a shock) but at about noon I started cramping up.  By 1:00, I was quite nauseated. I hadn't had a day where I was this sick in a while, and it took me by surprise.  I felt like I'd had appendicitis again but that sucker had been yanked pre-cancer. I took a compezine and went to bed, dozing fitfully, cramping mightily.  I was terrified that I was not going to make it to graduation the next day, and I lay in physical and mental agony, screaming inside "Not now!  Not after all this!"  I rarely think life is unfair, but at that moment, I did.   I couldn't believe that I might miss the day I'd been waiting to see, been tortured for three years to see.

At about midnight, I started to feel a little better.  I'd been taking pain meds to try to ease the cramping, and I was finally able to get up and take this picture.

Maybe I would make it after all.

~~~~~
Next post - Graduation Day

Younique 3D Fiber Lash Mascara - Product Review

Yay, a post about girl stuff!  Although one could argue that an entire blog about breast cancer contains nothing but posts about girl stuff, I think my friend Charles would disagree.

I am still in the midst of writing up my graduation experience - I want to share that with you properly. In the meantime, I created a video which is posted on my YouTube channel about an amazing product. Long time readers know that I don't clutter my blog with product reviews unless I truly love the product and it actually works. This is both.

Upon watching it, it looked a bit uneven in the video, and that's because it's hard to make a video and put on makeup!  But a lash comb evened it out and I didn't want to redo it - I think it shows how very long my lashes appeared. (Try to switch to the HD version if you have that capability.) I also forgot to mention the product is 100% natural, there isn't lead in it like other fiber products.) I've put on three coats before, and it's just amazing, they look like false lashes or extensions. Perfect also for hooded eyes, which I obviously have - we need our lashes or it appears we don't have eyes at all.

In case you were wondering, I took it off easily with a makeup remover towelette, and Emily told me coconut oil also works. That nap I mentioned?   I did take it with the mascara on, and it didn't leave marks on my pillowcase!  I have not tried it in a situation where my eyes water but I'm hopeful it will stay put since it did when I slept.  I will let you know.

Disclosure:  I did not get paid for this review - I only received the review product.  All proceeds from any sale go to Emily (who sent me the product). She was kind enough to offer to give it to me,  but I said no. She found me because her mother had breast cancer and also ended up with skimpy lashes, a common problem, and this product helped her mom - anybody who wants to help their mom deserves to make a bit of money!  So Emily sent me the mascara to try, no strings attached,  and I liked it enough to do a video and embed it here.  It is $29.00, which might sound a lot if you are used to buying drugstore mascara, but it is inline with the cost of a high-end mascara. I use Blinc which costs $25.00, and this works much, much better.  You do get your money's worth if you can afford it.  It's a lot cheaper than Latisse.

If you mention you came from my blog, she will send you samples from other products, I think to the first five people but she seemed flexible.

I highly recommend you try Younique Products sold by Emily 

Here is a direct link to buy the mascara alone.

I'm eyeing that rosewater for myself.

If anybody has a product they have heard about for cancer patients and want me to review it for them, let me know.  If I can buy it myself, I will, no need to send me anything.   If you are a vendor and have something you want me to try, email me.  Be forewarned: very few will end up on this blog as I am not turning it into an advertising vehicle.  It will be for YouTube and Facebook.

Next up will be my graduation story.

I am very tempted to end the blog with that story of triumph and joy...it should be the last post, don't you think?  But not to fear, I'll keep writing.

Grad in the media

Facebook followers know that my son graduated high school on Wednesday - the day I have long-awaited and struggled to see. I'm not ignoring my blog readers though, I really do plan to describe it for you.  I was tired after graduation and yesterday, I had a relaxing day of IV Perjeta and Herceptin.  Today I rested in my PJs.  Tomorrow, my son has two parties and needs a ride, and Sunday I have to take him shopping for his trip to Alaska, as well as take him to another party.   Monday I have a PET scan to see if cancer has progressed, so expect it mid-week sometime.

I've been getting dressed far too often these days, let me tell you.

Here is a hint:  Graduation Day was a perfect day....almost. Of course, as always, life threw in a little twist, a little stink bomb as it were, just enough to show me who is boss. That little reminder happened at the end of the day and caused me to lose sleep, which explains the PJs. I have trouble sleeping at chemo, not sure why, so today I caught up.

In the meantime, for your reading pleasure, here is a story our local news did on me and my son. Not only did it appear in writing but also in a news segment. (Which I can't seem to embed, sorry.)

How did they find me?  My son was on the science bowl team that won the national competition and was being covered by Lindsay Brauner, a media personality with a beautiful face and matching soul.  She discovered me as I retweeted her article about his success.  She read my story and asked to film us. Because I always try to represent the metastatic canceristas out there, all of whom have goals and some with children we want to finish raising, I said yes.  Cancer isn't always about survivors and pink, as we know all too well.  But it is about living while you can and appreciating what you have.

I'll share our graduation experience with photos (ones that pretend I have a chin) soon.

Quickly, I want to say thank you to Lindsay who has been supportive of Mira Loma and the Science Bowl team - it's rare to find somebody in the media who understands that covering smart kids is as important as covering athletes or killers.  What can I say about James Hill, my friend, who is in the news segment? He deserves his own page.  His own blog.  He has mentored countless successful people, including my son, and I'm forever in his debt.

But more on all that later.   For now, I just will leave it at:

WE MADE IT!