Why Is Stable Such a Bad Word?

A few months back I had been excited when the nurse practitioner unintentionally gave me the wrong numbers and led me to believe that my tumor had miraculously shrunken.  As a cancer patient, you long for the day they tell you that you are “NED” or no evidence of disease.  Apparently, we no longer discuss remission (that means that disease is likely to recur and who wants that?).  We discuss, instead, the fact that our bodies are no longer fighting the mutant cells of our own creating.  We are free from cancer, even if it is briefly.

Dr. Brooks, at that time, had tried to inspire me by saying the following: Your cancer is stable.  In other words, while we weren’t winning the war against the tumor, we weren’t losing the battle either.  No growth, no real shrinkage.  Stable is what most oncologists hope for in patients that have weak odds to begin with –something I only recently realized.  I never thought stable was such a bad word before.  Of course, I never had a mutant liver tumor invading my body either, so lesson learned.

When I brought up the surgery to Dr. Brooks, I had hoped that maybe I would find some secret cure in making someone cut.  I still haven’t given up hope on the surgery being somewhat successful and buying us more time.  Perhaps even just long enough to find the right drug to irradiate what remains.  I cling to this hope and focused all my energy on it while laying still in a tube for two hours.  I told myself the test would be work it, there would be progress and someday in the future a surgery that would help me move on from cancer and towards a whole new life.  A life as an actual, post-treatment survivor.

What I didn’t expect was a phone call this afternoon from Dr. Brooks.

I love this man, sometimes.  I really do.  Honestly, I was worried about the results of my MRI.  As I’ve mentioned, the pains are back; some days they are sharp and breathtaking, others they are dull and achy.  I think the dull ones are the worst because they remain fairly constant.  At least the sharp ones provide relief in between.  On the pain scale, ten being the worst ever, the aches are a consistent seven while the sharp strikes are about a nine at their worst, though they fade fast.  Milo gets frustrated because I’ll suffer through both without touching the oxycodone or even an ibuprophen.  I’m trying to limit my medication use.  Irony, yes?

Dr. Brooks, knowing I was worried, phoned to tell me he already looked at the draft of my MRI and wanted to let me know the tumors weren’t growing.  What he said, to my utter disappointment, was that the cancer is stable.  “The numbers are slightly better,” he said as calmly as possible.  “No growth.”

And celebrating began in Oz for all but the Wicked Witch who had lost her beloved sister.

Yes, I did just refer to myself as the witch.  Why can I not celebrate stable?  Why will my heart and head not accept that the medications are keeping my cancer from progressing.  This is a good thing, isn’t it?  I am not going to be dying any time soon.  I’m getting more time.  I’m still fairly healthy.  The tumor is not winning…

I guess it still feels like a loss to me.  Chemo is toxic, intentionally so.  It’s rough and the drugs are hard on me.  I’m miserable.  My quality of life is pathetic right after chemo.  Sure, I rebound well enough to do my shifts, but I am tired so often.  I’m hurting and sometimes it is a struggle to keep food down.  How is stable so good when it means I still have cancer?  There is still an orange-sized tumor occupying my liver.  Smaller ones in my lungs.  Icky, evil cancer cells floating in my lymph system.  The cancer isn’t gone.  I still have to deal with it and the side effects of the chemotherapy.  If this drug was labeled the best to treat my cancer, then what is next?  What hope do I have that something is going to give me the fifty years I promised my husband?

I’m frustrated now.  I really hate the word stable.  Milo says it isn’t such a bad word; after all it means we aren’t losing ground.  I love my husband dearly, but he doesn’t have to deal with a week of really bad acid reflux after every meal because of the chemo.  Or the nausea.  Or the vomiting so hard his bones ache.  Or the pain.  Not directly.  He watched helplessly as I suffer, which I know can’t be easy for him.  But I don’t feel like this is much of a life.  We can’t make real plans to do anything because of chemo dates and side effects.  Our lives are on hold while we wait for NED.

If anyone has seen that bastard, point him in my direction please.

For now, I guess stable with “slight” improvement means more of the same.  More nausea, vomiting, horrible days ahead.

Stable is a horrible word when you seek progress.  I long for the day Dr. Brooks calls and tells me it’s all gone.

When will that day come?

Checking In

I attempted to write this blog several times this past week without much success.  It wasn’t for a lack of material, but for the better part of the early week it was a lack of energy.  My last treatment hit me pretty hard.  In fact, despite the IV ativan and pre-medication, a few bites into lunch I started to feel really sick.  The nausea and abdominal pain became so bad that I ended up vomiting one of those horrible, painful ones I so thoroughly enjoy (sarcasm intended).  It was, sadly, the highlight of the weekend as almost nothing stayed down.  For three days I felt absolutely terrible and wondered if making a bed in the bathtub to be closer to the toilet might not be such a bad idea.

The only good news during the treatment, however, was that Dr. Brooks agreed to refer me to a surgical oncologist.  A few weeks back I had spoken with one of the ortho surgeons from our unit who had wondered how my treatments were going.  When I told him they called my tumor “non-surgical” he asked if I was willing to get a second opinion.  Second opinion?  I’m willing to get a million opinions if it means making it to the fifty years I promise my husband.  I happily took the contact information for a surgeon friend of his.   The same surgeon that Dr. Brooks has now referred me to see.  His name is Dan McCabe and he works out of TMC and St. Joseph’s on the east side.  His biography on his practice’s website states that his area of preference is multisystem cancers.  I’m a little nervous and want to as Dr. Brooks a few more questions before I make plans with this guy.  I have to admit, I really would prefer a surgeon that works out of my hospital or Oro Valley, not just because it is closer to home but also because I honestly feel I work for the best hospitals in town.  Biased?  Probably.  I’m just picky I guess.

My brother and sister-in-law also stopped by to see me this week and give me the good news about the auction.  Someone from her father’s work had won the set of pistols and now they could finally give me the check towards my medical expenses.  They were able to collect nearly four-thousand dollars for my medical bills, which will come in handy when I have surgery!

I have another scan on Tuesday, which I am not looking forward to.  I really hate MRIs.  I do.  I can’t sleep through them because of the breathing sequence they do to get the pictures.  Do you know how difficult it is to lay completely still for about two hours without falling asleep?  How boring?  How stressful it is to hope the pictures show some kind of change for the good?  It is this last part that draws the most concern.  I’ve had a lot of abdominal pain again; the sharp pains are back with a vengeance.  I actually caught myself starting to double over a few times at work this last week.  I usually breathe through it and try to keep going, but every pain brings a new wave of worry.  What if this drug isn’t working at all and my cancer is growing, spreading?  What if I’m losing?

Not happy thoughts.

As for work, I’m glad to be back.  It’s weird to have people ask about my hair still or to tell me how I’m an inspiration.  I’m really not much of either as far as I’m concerned.  Work is a necessity.  It has the health insurance that pays the medical bills that allow me to live.  Would I love to just be able to stay home sometimes and not worry about this whole thing?  Sure, but it’s not reality.  The reality is, people need to keep going.  I need to keep going.  Work is part of that.  I still think this entire experience is making me a better nurse.  I understand my patients a little more and I know that it’s best to keep going.  When they ask if I have cancer, I don’t lie.  When they say they’re impressed, I just shrug and say I’m doing what I have to do.  I tell them to trust me, I won’t lead them astray.  They may think I’m crazy when what I say sounds counter-intuitive –Walk after surgery? Are you insane?!– but they listen and trust me.  We’re patients together.

Which brings me to my closing.  Malika asked me last weekend if I would be willing to speak at her nursing pinning ceremony in May.  It might have been the ativan or the fact that lately I feel like there is nothing left to hide in my life, but I said sure.  She wrote the following message to the committee selecting the speaker:

I would like to submit a suggestions for a nurse speaker for pinning.  My best friend, Janine, would love to speak to our large pinning crowd. She has been a nurse for just over 2 years at Northwest Hospital and has worked with many of us Pima students throughout her time there. In August, she was diagnosed with Stage IV cholangiocarcinoma and is still in treatment for it; she also still works as a floor nurse on the neuro unit. I feel that she can offer an interesting perspective on being a nurse. When I brought up to her that we were looking for a speaker,  she immediately jumped up and said she wanted to do it. She has started a blog where you can sample some of her writing skills and abilities to inspire a crowd of future nurses and their families.  The website is: thisthinginsideme.wordpress.com. If anything, you get to read her wonderful, sad, and uplifting thoughts on being a nurse with cancer. Please consider her as a speaker for our pinning ceremony. 

I wasn’t sure if I would be selected.  Certainly there were plenty of nominees out there with longer nursing careers and more interesting stories than mine, right?  Exactly.  Still, a few days later Malika had contacted me to let me know that I was chosen to be the Key Note speaker!  The response she received from faculty was touching:

Malika,  I forwarded your suggestion to faculty & to the pinning committee members & have received many positive responses.  So, could you please ask your friend Janine to speak at our pinning.   She needs to prepare only about 10 minutes.  The topic is up to her, something she feels will be of interest to new nurses.  We are grateful & looking forward to meeting her & hearing her speak.

I still have no idea what I will say in my ten minute speech, but I look forward to it!

Anyone want to help me rehearse?

Happy Valentine’s Day

Milo and I are only too happy to show we are mushy and in love, just ask anyone who is stuck spending any time with us.  I adore my husband and cancer has only given me more reasons to be extra expressive.  Should this not end in our favor, I don’t want my husband to ever doubt that I loved him very much.  I also want him to have wonderful memories of us to get him through the rough patches.

Tonight, though, Valentine’s day was slightly overshadowed by my cancer.  Our original plan had been to simply stay in and spend time together, but we ended up on a double date with some friends of ours.  I was actually really excited for the chance to get even slightly dressed up for a night out with my handsome husband.  I spent a while considering the right outfit, what jewelry (not that I have much that I wear) I would wear and what shoes…

But then, I got to my hair.

People have been really impressed with how well I am taking the hair loss.  In all honesty, I do love that I simply have no hair to worry about fixing in the morning.  It doesn’t have to be wrapped in a towel for a half hour to dry anymore, so showering is a lot faster.  I never have to worry about it getting in the way when taking care of my patients.  Plus, I felt strong being the one to decide the hair was going to go rather than letting the chemo steal it away bit by bit.  I went down with a fight, what more could I ask?

The trouble today, however, was that without my hair to style and finish off the outfit, I felt…naked.  I didn’t feel especially feminine or beautiful.  Looking in the mirror at my cute little outfit, my Lia Sophia jewelry from Milo at Christmas, I wanted cute curls to go with my style.  But what looked back at the mirror was simply short spikes.

I was incomplete.

This isn’t the very first time I noticed my lack of hair.  Trust me, people have been bringing attention to it whether I have a wrap on or not.  Patients are especially nice about dancing around the subject, but even they ask.  The habits I had of playing with my hair still exist, even if I no longer have the hair.  When I am tired, I reach longingly for the missing locks to roll between my fingers.  This past weekend at Milo’s parents, I even reached nervously up to brush my hair back behind my ears;  I wasn’t surprised to find it missing, but dismayed that I had the habit so ingrained that I moved phantom hair.  It’s almost as if a limb is missing and I can still feel it.  My hair seems there sometimes, despite the fact I know it is gone.  Still, I am struck sometimes by my reflection or shadow.  It’s an odd sensation to think you have hair and look up only to find it is gone.

Mostly, I don’t think about it.  I wear one of my cute head gear options, especially loving the large flowers, and prance around all proud of my cancer badge.  I am surviving, what’s not to be proud of?

Tonight, it just wasn’t right.

I almost cancelled our date.  Nothing I put on felt right: not the flower or hats, bald was just wrong.  I couldn’t rectify what I wanted to look like tonight –the beautiful princess heading out on a romantic date with her prince– with what was looking back in the mirror –cancer patient heading out with her handsome prince.  I wanted hair.  I wanted to look feminine and graceful.  Heck, I wanted to feel like a girl.

Milo said all the right things.  He pointed out that I looked like a girl: I have breasts.  I am wearing girl jewelry.  I am a girl.  I talk like a girl.  He said I looked beautiful.  He told me the hat I picked with my outfit looked perfect.  The man tried valiantly to win a battle he honestly and truly had no hope of winning.  There really was no way to convince me that everything was fine and I was looking like a girl going on a date.

I reluctantly allowed Milo to take me out in the purple ball cap, which really did not match the outfit I had on but I wanted my whole head covered.  We arrived early for the date, which happened to be attached to a mall.  I figured one of the stores had to have something resembling hair, so I expressed interest in wandering around inside.  Within five minutes I had found a stall of wigs and moments later I finally had hair.

It is a human hair wig and I hate to say it, but I felt so much better.  Despite the fact that it itches a little and will take some getting used to, I absolutely love it.  I won’t wear it to work or even all the time, but to have the option to look girly when we go out to dinner or a party will be nice.  I’m not sure how long I will have the buzz cut, my hair is still falling out in little patches and growing in others.  So long as it is uneven, I will leave it this way.  It is great, however, to have the option of hair.  At first, I was opposed to it.  Wigs are ridiculously expensive and some are clearly really badly made and look fake.  The second I put this one on, however, I felt better about being on a date with my husband and just looked like the old Janine before cancer.  I needed the boost physically and emotionally.

I hope everyone had a wonderful Valentine’s day with the people they love.  I did.

Half-versary

I consider myself to be something of a romantic.  When I started dating my first boyfriend, I wanted to celebrate every little milestone.  Three months was a semi-versary.  Six, a half.  He and I didn’t make it to a year, thankfully, but celebrating the little things got me excited.  With Milo, we celebrate more: the first kiss, the first I love you, etc.  We don’t necessarily do anything big, but we make note of the fact that the day is special to us and our relationship, even if I have to remind him of the date.

Today is a half-versary I get to celebrate on my own.

Six months ago today I was diagnosed with cholangiocarcinoma.  Despite the fact that my oncologist refused to give me statistics and probabilities to my survival, the internet was more than happy to oblige.  Research told me that, even with the best of aggressive treatments, I wouldn’t survive six months.  At stage four, my survival rates are nearly non-existent.  In fact, even if diagnosed while stage one the five year rates are a mere thirty percent.  Compared to the survival rates of other cancers caught at the same stage, it’s pretty pathetic.

So today…I am supposed to be dead.

I’m not, however.  In fact, I had lunch with the ladies I used to work with in Performance Improvement and coffee afterwards with my friend Rachel.  I went to the dentists, shopped for books, drove my car around and even found time and energy to blog.  I am not nauseous or vomiting.  I’m not as excessively tired as I was a few days ago post chemo.  I am very much an active and otherwise healthy thirty-year-old female…

Except, I’m supposed to be knocking on death’s door.

It’s an odd feeling to know that science expects you to die sometime in the next five to ten years.  It’s exceedingly creepy to realize that you are already surpassing a researcher’s expectations for you.  I don’t know what is in store for me, if I’ll get five or ten years (or fifty!).  I don’t even know if I will be able to blog six months from now celebrating a year out from diagnosis.  What I do know is that today I am alive, happy and still fighting.  I have beaten the odds thus far and hope to continue to do so.  I would love to turn six months into six years or, better yet, sixty years –though that might be pushing it since no one in my family has lived to be ninety.

So, cancer, to you I say: screw you.  You can’t have my hair, I took that from you.  You can’t have my spirit, that’s mine alone.  You can’t have my life, I want it more than you do.  You may be strong, but I am stronger.  Feel free to show yourself out.

Here’s to six months!

Head Gear

When I decided to shave my head and steal my hair from the chemotherapy (because now, cancer and chemo are active monsters working against me), I never expected the reaction I received.  I anticipated support from my friends and family, I was even prepared for a few gasps of surprise.  What I didn’t see coming was being called inspirational, strong or brave.  I also didn’t expect to hear how beautiful I was or how I was empowering others.  I didn’t shave my head for any of those reasons.  My only thought had been that I could no longer stomach watching my hair be taken bit by bit.  There was no more crying to be done over a balding head.  I wanted the power back from this disgusting disease and these horrible drugs.

Thus began the adventure to cover my shaved and often cold head.

I am self conscious about my appearance.  I already feel as if some people stare at me because of my weight (fat girls never feel like they can completely blend into the scenery).  Now, the head makes me stand out that much more.  Today, I even had some teens look at me, start whispering and then laugh.  Do I know it was about me?  Not certainly, but it didn’t feel good nonetheless.  Mostly, I feel rather confident with a hat on, but I know people can see the fuzz where the hat doesn’t cover.  Fortunately, hats aren’t the end all, be all in head wear.

There are an insane amount of options out there for someone who has had chemotherapy and is losing his/her hair.  I didn’t know that from going to the traditional mall.  I found a single scarf, a few hats and some flowers to clip on to a headband I had.  I thought about scrub caps for work and even bought a few, which I later returned.  Lesson one: head gear that rests on the scalp or peach fuzz head will irritate.  It rubs wrong, even if the material is rather soft.

Lesson two: covering every area where hair would be is an option if you want it.  You just have to be willing to cover part of your ear as well.

I learned these lessons at Commenci, which is a boutique here in Tucson that specializes in different options for cancer patients and survivors.  They not only have a selection of head gear for the chemo patient who has lost his/her hair, but they also carry specially padded bras and swimsuits for women who have had mastectomies.  The ladies there are so incredibly knowledgeable and willing to spend time teaching you about different options and how to wear them.  They will teach you how to tie scarves and even design a wig for you cut to your specifications.  It’s am amazing place.

From this one trip, I have a lot of options on what to wear during this time.  I would like to share them with those that think bald, wigs and scarves are all there is out there.  You can be a bald, “brave” cancer patient and still be super fashionable –I say as I wear my Tinkerbell shirt and track pants.

First, I’ll start with the obvious: hats.  Personally, I am not a baseball cap person; I don’t think they suit my face/head.  For those who like them, they are an excellent choice for head wear.  I also highly recommend investing in winter hats if you live in a cold area.  I live in Arizona and still run around with a hat on my head most of the time, especially at night.  No hair makes for a very cold head.  The purple sparkle cap was purchased at Commenci.  They recommend that head gear not rest against the head and sell loose, light material that poofs a little around the head.

Turbans are also a great way to cover the head.  I found them especially awesome and comfortable.  Not only do they come in several colors, they come in a variety of materials and designs.  Again, I was told they they should be slightly puffy around the head to keep from rubbing against the scalp or regrowth.  Stores like Commenci will help you find the right sizes.

Everyone knows that chemo patients tend to drift towards scarves.  I don’t particularly blame them.  Silk feels amazing against the skin and that means that a scarf or wrap on the bare scalp would feel amazing.  Skin becomes very sensitive during chemo; skin and hair are cells that are constantly regenerating, so chemo kills them off as well.  It’s nice to have something soothing to drape over it.  I didn’t get to do damage in the scarf department today, but I did buy one with Malika on Monday.  I also found a hat/scarf combo that was pretty awesome and learned how to tie scarves appropriately.  The knot can be at the base of the neck or up on the side with tails that dangle like hair.  Again, we want poof.  Nothing is supposed to be tight.

Knit caps came as another recommendation from many a friend and chemo patient.  I was fortunate enough to have a friend from work whose mother knits caps with left over scraps of yarn.  I had first pick from her most recent lot of beanies, all super soft.  If you know someone that knits or crochets, this is a great item to ask for.  Just remember you want soft yarn and for them to fit comfortably.  I alternate wearing this and a monkey ski-cap to bed.

Finally, there are headbands and a variety of accessories to wear with them.  I’ve always loved headbands, even when I had hair.  Now, I have an excuse to wear them more often.  Warning, unless you think you are cute (and I do), you might not like the headband look.  You come across looking a little like a baby.  On the positive side, however, Commenci has taught me that headbands and their accessories can be re-purposed as decorations for hats and turbans (shown in picture three).  In fact, she recommended that broaches, pins and clip on earrings can be used to add some sparkle to anything worn on the head (photo one is a plain black headband with a flower pinned to it).  I happen to love sparkle and flair, so I purchases some great flower clips and pins to add to my head wear.

I am really excited about the prospect of having options.  I do, however, really want to get myself a wig in the future as well.  I feel that for certain special events I really want to have the option of a beautiful hairstyle instead of a covering.  I might be brave, but when I look back at pictures from this time I want to still feel like there was more to me than cancer.  As I mentioned previously, hair is part of the definition of a person.  We all feel great with the right style and color.  As wonderful as the other options are, I want something a little more “normal” for bigger events.

The nurse in me also feels obligated to mention that besides head wear, it isn’t a bad idea to stock up on sunblock and lotions.  Just watch what is in them.  So far, Mary Kay products haven’t bothered my skin, but I know the harsh sanitizers and soaps at work are starting to.

(And a big thanks to my Mom and Dad for buying me some of the great stuff above! I really appreciate it.)