Friday, October 30, 2015

Check Out

On the wall in one of my oncologist's exam rooms, near the door, there is a sign that says, "Check Out."  

This is not the real sign

It may have been there all these years and I never noticed. Maybe I've never been in that exam room before. I'm not sure what it is telling me - is it reminding me to check out with the doctor's assistant before I leave?  Is it a reminder for the physician?  Perhaps that room was used for something else before it was an exam room.  The signage location makes no sense - stuck on the wall near the right side of the door where it can't be seen if the door is open.

Seeing a sign like that when you get bad news like I did is kind of like hearing the music to Jaws playing in your head when you go to the beach.  Ominous.

I wanted to take a photo for you all, but somehow, pulling out a phone to photograph a sign when your physician is sharing that cancer has exploded throughout your abdomen seems.....rude.

Perhaps even a little checked out.

I went for my usual therapy on Wednesday and asked for a copy of my latest PET results before I saw the doctor. Although he had called me to explain it, I was unpleasantly surprised by what I read, which was worse than I had anticipated.

I also realized I needed an anatomy refresher.  When my doctor called me with the news, he had told me that the cancer was in the abdomen, including the porta hepatis, which I thought was actually inside the liver. Well, radiologists don't seem to consider the porta heptatis as part of the liver tissue (or parenchyma, as they would say) as the report says, "no definitive metabolic evidence of recurrent hepatic metastatic disease."  The main areas of involvement seem to be between the stomach and liver; the porta hepatis is the gateway area that the veins, ducts and artery flows through to get to the liver. I also had to look up the other places cancer has spread:  the gastrohepatic, portacaval, and left periaortic regions.

Technically, "a 1.5x1.11 cm gastropheptac node, multiple adjacent/confluent upper left periaortic nodes, multiple-ill-defined nodes in the porta hepatis and portacaval regions" all with SUVs of 6.0.

I must have missed that day in med school.

Cancer is also in the subpectoral and axillary nodes, areas with which I am familiar.  It seems Machiavellian to now have cancer in my axillary nodes so many years after the original diagnosis. I remember clearly my old breast surgeon, Rockstar Raja, being elated that my nodes were clean despite extensive disease in the breast.

Devious joke, Mr. Cancer.   You got me.

Apparently, there is also disease in my left lung - four menacing, tiny lesions.  There are multiple affected areas in my upper abdomen,  far too many to list.  It's considered "moderately extensive" metastatic disease, an oxymoron if I ever heard one.  Only in medicine...

Well, shoot.

My liver?  Clean as a whistle.  A whistle which has been kept in a pocket, used and is covered with lint and dried spit.  That kind of clean.

So the plan is to get me on TDM-1, aka Kadcyla, as soon as possible.  "Within the week" my oncologist said, alarmingly. I'm not sure insurance companies do "within the week" though.

Oddly enough, I had a reaction to my old friends, Herceptin, Perjeta and Zometa.  I sat, happily hooked up to the drip,  watching the nurses swear at a new EHR system they are implementing.  As the Zometa started, my back started aching intensely and terribly. It felt as if a rubber band was wrapped around my intestines, and was being tightened.  The pain spread to the area that has been hurting all along -  my side, my left flank.  It was quite strange.   I've been on these drugs for years.   Having a reaction now would be bizarre, to say the least. But the pain intensified until I couldn't take it anymore, and I reached up and turned off the drip.  My nurse gave me some Toredol. I had some pain meds in my purse that I also took, which barely helped.  My nurse even thought I should go to the hospital but I nixed that idea, as I always will.  I'd rather suffer at home than be pain-free in a hospital.

Two hours later,  I was fine.


If you are a newbie to disease reading this, and if you think that there is clarity in medicine, I smile at your innocence, charmed like a new mother seeing the world through her child's eyes.   In medicine, there are often more questions than answers.  No matter how sophisticated the machine or brilliant the doctor, sometimes, the unknown reigns supreme.

As an example, even with all the cancer in my body, nobody can figure out why I've been in so much pain or can't eat.  (I am now down to 90 pounds).  Sometimes, there are no obvious answers, and sometimes, people in medicine can't see the forest for the trees.

You know what I think?  Cancer hurts.

Cancer effing hurts, even if it's not technically impinging on something or interfering with mechanics.   It just does.

So another appointment over and another goal set:  I told my oncologist that my oldest son was getting married in May, and I want to live to be there.  As I stated my desire, I looked over his shoulder at the check out sign, and thought "not yet, buddy.

Not yet."

Speaking of checking out, is this a good time to remind you to start your Amazon shopping from the box on my page? Check out the right side, and click.    If you start on my page, anything you put in your cart and check out during that trip will net me a small amount.  With the holidays coming, and a new insurance plan with a $5,000 deductible, I am going to need all the help I can get.  Thank you.

Friday, October 23, 2015

In the Stream

I was on a live TV, web streaming show called The Stream yesterday.  It was an interesting experience.  Perhaps not my best interview, as it was done via Skype.  I had so much more to say! There was some lag so I could not hear when the other women were finishing speaking, and I could not see the other women because I had to look at my camera and not the screen.  Looks like some had the same issue as you could see us fiddling with our earbuds.

The messaging is important so while maybe not my finest technical interview, it's worth sharing!

Thanks to The Stream for having me on.

Wednesday, October 14, 2015


Over the past four years since being diagnosed with mets, six with cancer, I have had approximately ten PET scans, about 50 CT scans, 24 MUGA scans and a sprinkling of bone and other types of imaging tests.

Imagine the time that takes - the driving, the parking, the waiting rooms, changing, prep, lying in machine after machine. Hundreds of hours I've spent - no, thousands - not only waiting for tests, but waiting for doctors and waiting for treatment. I have likely had 500 doctor appointments over the past years - often going several times a week. My life is thoroughly medicalized and has been since my initial diagnosis.

Lying in these machines, waiting for them to probe through my skin and reveal the secrets lying beneath - to learn whether cancer is growing or retreating, whether I have time to live or it is time to prepare for death - I think. I think about what it means to have this disease take away your life piece by piece, health, job, functioning..but also what it means to be one of the lucky ones who enters remission and gets a reprieve from cancer and gets some of that back.

And then, have it taken away again.

Which is what just happened.  My remission is over and I have active cancer again.

I think about how small we are in the grand scheme of things, and what makes us cling to life so desperately - and we all do, we all want life so much.

What I have mostly thought about is my family. I think about my loved ones. I submit my body to needles and chemicals and radiation and scalpels, for them, to see as much of their lives as I'm privileged to see.

In history, we are nobody. Only a few of us will have names that live past our immediate families: Steve Jobs, Bill Gates, Barack Obama. The rest of us, we'll be forgotten in the dust of time. And that's okay. Millions of people have come before us, each as individual as you or I. Each has had their life, their suffering, their joy, and their deaths and each is now gone. Billions of people, known only for 3 generations if they are lucky.

All we can do is try to do a little good while we are here; nudge the world in a way that we think it should be nudged. That can be done by something as simple as raising a decent human being. You never know if that person will truly change the word, be a President or Inventor, or will give birth to one. Not all humans must be great. Ultimately, what gives most of us happiness, what gives us the ability to continue on in the face of adversity, what gives us purpose, is being with the ones we love. Why is that so important? I don't know why, I only know it's the biggest part of humanity. So this time, as I sat in a darkened room with radioactive sugars dripping into my system, preparing for the test that will tell my fortune, as always, I think of my family.

My fortune was not difficult to tell.  In cancer, the crystal ball is not opaque.  What happened to me is what happens to all women with metastatic breast cancer.   Cancer grows.

All we want as we are scanned and treated is to live long enough for the next milestone: to see a birthday, a graduation, wedding, or a grandchild. Our lives are like fireflies in an endless sky, blinking out quickly. But we have value while we are here. Without us, the person who may change the world would not come about.

We are worth money, and research dollars, and hope.

My cancer regrowth is in a difficult place - abdominal lymph nodes and portal hepatis. Lots of important veins and structures there.    I'll have a radiological interventionist consult to see if it can be biopsied.  If not, then I will go on Xeloda, and stay on Perjeta and Herceptin.  And cross my fingers that I am allowed another little miracle.  The miracle of time.  There are more milestones to reach.

Monday, October 12, 2015

TCL Roku TV - Givaway!

I've been hinting on facebook that I had an awesome giveaway coming up - and today is the day it begins.  I cannot be any happier that I get to give away such an amazing prize. ::::drumroll::::

A 32 inch, TCL Roku Color Series Smart TV - with a colored bezel to match any decor!

I was sent one to review, and being a techie, I was tickled pink. (Hey, it's October.)  

I have a confession to make.  I've been wanting to get this off my chest (what chest I have left, that is.)  I actually do like the color pink quite a lot.  And these TVs come in three different colors, including pink.

Still,  the TV I selected is blue, to match my silver, blue and purple bedroom.  I would have felt guilty admitting to wanting a pink one.

Let's get this out of the way:  this is clearly not a tech blog, so why would TCL give me a TV to review and give away?  Well, they are donating $50.00 for every pink TV sold to the Breast Cancer Research Foundation this month.  One of the higher-ups in the company lost somebody to breast cancer, so this is near and dear to their hearts.  The donation this month is truly meaningful and not just lip-service to "the cause."   Trust me, I sent many emails back and forth before I agreed to this promotion.  They did their research and found a good charity - didn't reflexively give to Komen.  (I love all my readers and jumped at the chance to give you a TV, but I would not have accepted this if Komen was the charity.) As you know, I don't want the marketing of our disease to be exploitative, and I want it to go to a good charity.  TCL (The Creative Life) meets both criteria.

To show you how sincere they are, the company told me I didn't even have to mention the donation if it made me uncomfortable, but of course, I will because I believe it comes from a good place.

Back to the TV:

We women are also in their target demographic so there is more than one reason to have me review their product.  The TVs are attractive (the bezels come in blue, green and pink) and maybe tech manufacturers are starting to understand that a big black box that dominates one of our rooms should, you know, be stylish.  Women buy TVs, too.  Duh.

Not to mention that we are sick. The truth is, sicker people watch more TV than healthy people.  Despite my pronounced dislike for daytime TV in doctor's offices, I am an admitted TV addict.  I love to read but years of chemo has made concentrating much harder.  So I watch a lot of documentaries, among other (trashier) things.  I have a Smart TV already, so  I watch network shows, cable, streaming, YouTube - I have Amazon Prime, Netflix, and now Roku.  I have my media bases covered!  Tech cred:  I bought a TiVo in the year 2000 when my son was 3 years old, and in his entire life at home, he has never seen a commercial nor known that TV hasn't always been pause-able.   All that is to say is I'm not a grandma behind the times - at least on this one front.

I know that not everybody is as into technology as me, so I was eager to see how this TV worked.

The box arrived well-wrapped.

Packed beautifully

While I intend to mount it on the wall, for now I just put it on a side table in my bedroom, where it stood easily without tipping.  It is very light, and I was able to carry it myself.  People who follow me on facebook know I've been feeling quite ill, and yet I still had no problems unboxing or moving it.

My first impression was that the TV with the colored bezel was attractive.  It adds a subtle touch of color to the TV, a welcome change from the normal black or silver.  The color is not so bright that it will overwhelm a decor but it adds a much needed touch of charm.

Pretty colors! Maybe pink would have matched after all!

I know that for some, technology can be confusing so I paid close attention to the setup.  It was a breeze, and if you know your WiFi password, you can do this without having to call in younger family members.  Even my husband could do it!  You are guided through it step-by-step.  You enter your password, you sign up for a Roku account, and you are done.

The remote is simple  It only has the buttons you need.  You want to stream something from Amazon Prime?  Hit that button.  One button access is handy.  You can get exactly what you want - streaming videos and shows, with no difficulty at all.

The picture quality is fine at 720p.  I haven't spent a lot of time watching shows yet but I didn't see any problems with motion or color control.

I am not connecting it to my Direct TV system (or ATT or whatever it is now) so I can't speak to any complications that may bring.  It looks easy as the rest of it, but for me, this is a perfect bedroom TV, where I can watch some YouTube beauty gurus complaining about each other (hilarious drama queens on YouTube if you haven't seen them), or stream a movie while lying in bed.  I use my Direct TV DVRs to record all the shows that I want to watch, and my husband and I watch TV together in the evening. This is the perfect TV to put in a bedroom, office, or craft room and watch all that weird stuff your husband doesn't want to see.

Botched?  My 500 pound life?  Hoarders?  I'm in!

This may be a perfect TV for cord-cutters too.  It is not expensive, it's fashionable, it is easy to move and set up and it functions perfectly with all the streaming services available.  It also comes in larger sizes so is perfect for a living room wall/main TV.

And I cannot believe how good this is, that I get to give one to you!   I love my readers so much. You have propped me up during times good and bad, and I'm so happy to be able to give back this way.

Bathed in the glow of happiness that I can give you one too!  

So enter the contest below and good luck!  I am using Rafflecopter, which picks a winner randomly.

For more information about TCL, please go to, follow them on twitter or Instagram at #tcl_usa.  To enter the contest, you get an extra entry if you send a tweet, so tweet away!