Look At Me

"You just wouldn't know it to look at you",  clucked Nurse Lovely as she drew my blood and I was explaining the excruciating pain I was experiencing in my left arm and shoulder area. Pain so strong it had awoken me from my sleep several times that week.

I've heard this expression many times, and I'm never quite sure how to respond.  The thing is, pain is for the most part invisible, until it causes our facial features to contort, and our eyes and bodies to grow weary with exhaustion.

My friend Being Sarah, author and fellow blogger sums it up perfectly in her book of the same name, Being Sarah;

"Breast cancer can be like this, you don't look ill, but you feel maimed and emotionally depleted."

Actually,  I'm quite sure this is true for most cancers and other debilitating illnesses.

But I'm definitely feeling maimed and rather emotionally depleted right now.  I do seem to be caught in that never-ending cycle of one-thing-after-another. For the first time,  since my magical train journey through pink lollypop land began way back in 2004, I've begun to experience side effects from the cancer that resides uninvited in my body.

Up until now, most of my ailments and other physical complaints, have been (in)directly attributable to treatment. Surgeries, radiation, chemotherapy have all brought with them a wonderfully diverse and at times surprising cornucopia of side effects. And generally I've been able to take medication or adjust treatment to combat these side effects, be it pain, nausea, vomiting, fatigue, neuropathy, gastrointestinal upsets, hair loss, low blood cell counts and associated conditions, weight gain, weight loss, allergic reactions, unidentified-but likely-battered-immune-system-induced-afflictions, mood swings, hot flashes, night sweats, etc.  You name it I've probably had it and I've dealt with it one way or another.

Unless we're talking about hair loss, I doubt anybody would know to look at me that I was experiencing any of these side effects. Unless I tell them.

But now I find myself in a different pickle. The cancer has determined to stealthily work on robbing me of the use of my left (and dominant) arm.  Symptoms have been very slowly appearing over the last few months, but have started to escalate recently, defying the logic of my last scans which showed my disease to be stable.  Exactly how the cancer is accomplishing this theft of a much loved limb, is a hotly debated mystery soon, we hope,  to be unveiled by the wonders of high resolution MRI technology.  (Please no armchair diagnoses here, thanks!)

I can still use the arm, but now only in a quite limited capacity.

Tingling finger and arm nerves.

Numbness that is slowly taking over my hand. One thumb and two fingers now offline.  And half an arm.

Depleted strength and an almost atrophied set of upper left arm muscles.

Upper back muscles constantly firing and twisting themselves into knots.

Constant nerve pain running down the entire length of my arm.

Frequently interrupted sleep and pacing the house until painkillers kick in to coax me back to sleep.

Daily tasks now requiring assistance, adaptation, or not performed at all. So far the list includes cutting things, like the pork chop in the restaurant the other night, fastening the straps on my favorite sandals, handwriting, toothbrushing, eating with a fork or chopsticks, driving, lifting my dog, grocery shopping, laundry and so on. Things are starting to slip. Many of the day to day activities that I used to enjoy, are now tarnished by this pain and loss of strength and dexterity, and I can feel the slow decline of function with every passing day.

Luckily,  I have a good support system when it comes to third party assistance. But I hate to ask. It makes me frustrated and angry. Why do I need to ask my beloved to cut up my steak, like a small child? Why do I need to ask my nearly-senior-citizen-bless-her-heart- mother-in-law to help me with household chores? Shouldn't it be the other way around? This seems to be against life's natural order.

But the loss I am feeling the most keenly right now, is my inability to type with both hands, and sit at the computer for any length of time. This only aggravates my pain level. But I'm a full-time blogger, I regularly tell my doctors. How can I blog with this pain? How can I blog if I lose the use of my arm? How will I cope?

And so, I find myself exploring different ways of coping, read blogging.  One-handed on an iPad seated in a comfortable chair (working pretty well I would say), voice recognition software (not so much), video blogging (maybe!).  Trying hard to concentrate under the fog of medication, the ever present chemobrain and constant nagging pain. Wondering if we can identify the source of the pain and treat it with a palliative dose of radiation, or something.

It's getting more difficult, and I'm definitely slower and I DO need some assistance.  I'm certainly grumpier, frustrated, scared, and in pain, but you wouldn't know it to look at me.

Chest Pains

Prologue:  This is a piece I wrote back in May 2011, several days after a second visit to Pink Bank Hospital emergency room in a matter of months.  This was very hard to write, and has taken me quite awhile to decide to publish it.  But there's something I want you to know........... 

Penned: June 1, 2011

I want to write about what happened to me last week. I don’t know if I can do this publicly.

It scared the crap out of me.

My husband was  away on business trip.  I was by myself.  It was Thursday afternoon. May 26, 2011.

Feeling a bit tired, I lay down on my bed and napped for about an hour.  After waking,  I got up and felt a pain in my chest area.  Sort of like I’d been sleeping in a weird position and the muscles had yet to properly straighten out.

But the feeling didn’t go away.  In fact it started to escalate.  My chest tightened, I began to feel slightly nauseous, and it hurt when I breathed in.  My abdomen became swollen and I felt full despite having eaten very little that day.

I started to feel very frightened.  Much of what I was feeling, was similar to how I felt back in March when I had the heart issue.  But this was different,  in that now my breathing seemed to be involved in a way that was painful.

I sat on the couch trying to convince myself it was nothing.  But experience told me otherwise.

I debated who to call first.

Since my husband was away, the closest people were my in-laws.  I knew that they would jump to it, and do whatever I asked.  But all I could think about was how much my call was going to freak them out.

Then I thought about calling my friend who is a nurse.  But she probably wasn't home and I didn’t want to leave her a message.

I realized my doctor’s office was now closed, but I could reach the on-call doctor.  I reached the answering service and when they asked me the problem to relay to the doctor, I heard myself say “chest pains”.  There, I’d actually said it.  Chest pains.  Then I started to cry.  I was alone and I was frightened.

The on-call doctor telephoned me within about five minutes.  Chest pains? Yes. As he was questioning me I broke down and cried like a blubbering mess.  He was calm and very nice, and quietly suggested that I needed to get myself to the emergency room and did I have someone to drive me?  Yes I did.  He said he would call ahead and let them know I was coming. Chest pains.

My mother-in-law arrived and we immediately set off.  She was driving like a maniac and kept asking me how I felt.  Chest pains? How are the chest pains now? I had to tell her to stop talking, slow down and just get me to the ER in one piece.  We drove the rest of the way in silence, whilst I sat there quietly freaking out. Chest pains.

Upon arrival at the ER I said “I have chest pains” and I was immediately asked to fill out paperwork.  Thinking when you are in this state is almost impossible.  Then they told me to take a seat and wait for the triage nurse.  But I’m freaking out, I have chest pains.  Please take a seat.  I sat near the station desk, and heard them talking about me.  I had become Chest Pains.  Not a person who is extremely upset and frightened.  Chest Pains.

After what seemed like an eternity but was probably only five minutes the triage nurse called me in.  Take your purse off my desk she chided me.  Then the questions.  The jaded questions.  Chest pains? Look at the smiley face chart.  Describe your pain on a scale of one to ten.   Describe your pain. DESCRIBE YOUR PAIN PLEASE.  I break down and sob.  I can’t speak.  I don’t know.  All I know is that something is very wrong.

Something inside the nurse softens.  Honey I’m sorry I know this is hard but we’ll figure this out.  I’m just going to write that you’re at a “9”.  Chest Pains is at a Nine.  Now I’m going to try and find you a bed.  Makes a call.  I have Chest Pains here who’s at a Nine, can you please clean out Number 6 for her.  Chest Pains. Nine. Number 6.  Where am I?

Now she feels really sorry for me and walks me back into the ER.  Number 6 isn’t ready, so I am placed on a gurney in the hall.  Chest Pains?  Yes.  Monitors are attached.  Number 6 will be ready soon.  Please go to the bathroom and put this gown on in the meantime.  I leave my underwear on.

I wait.  Two hours later I am shown to my “room” and I become Number Six.

More monitors.  More needles.  More Doctors.  More Examinations.  No Answers.

11.30PM.  Number 6? Chest Pains? Cat Scan? Yes.  Finally some answers.

1AM.  I hear the Doctor discussing my case.  Number 6? Chest Pains. Yes.  Cat Scan.  Less than 10%.  Good.

1.30AM.  Doctor stops in.  You have a small partial collapsed lung. A pneumothorax.  We’re going to keep you on oxygen overnight and watch you.  We hope it will just correct itself.  We don’t know why it’s happened but it doesn’t appear to be lung mets.  This is good news.  It could have been much worse.

Much worse.  Yes.  That’s true.  Just not today.

2AM.  Would you like a sleeping pill? 5mg or 10mg? 5mg please. Number 6. Chest Pains. 5mg.

8AM. Number 6? Chest Pains? Chest X-Ray.

9AM.  Dr Cuteness appears at my bedside and takes my hand.  Rachel I’m sorry you had to go through this. I don’t know why it happened.  You can go home now and I’ll talk to you on Wednesday.

Rachel.

The first time since the ordeal began that anyone called me by my first name in a way that connected me with what I had just gone through.

Rachel. I had chest pains.  I had a partial collapsed lung.  I have cancer. I am scared.

MY NAME IS RACHEL.

Epilogue:  The pneumothorax was small enough that I did not require a surgical intervention and so far appears to have healed on its own.  

Anna Rachnel is a pen name I created for myself when I first started blogging in 2009.  I was reluctant to reveal my real name due to a severe case of cyber-paranoia.  As the blog became more widely read, I started to question whether to keep the pen-name.  

What purpose was the pen-name serving, other than as a kind of security blanket?

Today it's time to shed the security blanket.  I have found my virtual identity.  I have found community.  I have found friendship.  I have found trust.  

Anna Rachnel has served her purpose.

My name is Rachel.  Rachel May.  I am named for my great grandmother.

This is me.  Rachel May.  June, 2011

Let's Talk!

I'm still kind of on summer hiatus, but can't keep away from the blogging for too long.

On Monday night I "attended" a Tweet chat on Twitter called #bcsm (Breast Cancer Social Media).   Basically, it's an hour long event on Twitter every Monday night at 9pm EST, and is attended by anyone who's interested in talking about breast cancer.  If you missed it or would like to know more, here's a round-up and transcript of last Monday's chat by @jodyms who co-hosts and blogs at Women With Cancer.  You can join the chat just by adding #bcsm to your tweets,

One of the really great things about this forum, is that it's also attended by health care professionals, and is a fabulous opportunity for patients, like me, to connect with these folks in a forum that doesn't involve an invoice or a fight with the health insurance company.  It's really interesting to get a perspective from the "other side of the desk" so to speak and to also share mine.

After the chat, I read the transcript and was struck by a comment from one of the doctors in attendance.

More and more oncologist see Stage IV as a chronic disease that one can live a really long time with -- QUALITY TIME #bcsm

Let me just preface by saying that I completely understand that the comment came from a place of kindness and compassion, perhaps to try and ease the fears of those in attendance who are living with Stage IV disease.

But on the other hand the comment did cause my blood pressure to spike somewhat.


Is this really the belief of most oncologists? Because if it is then then I'm putting my hand up to say that there may be a DEEP chasm from what oncologists believe to what metastatic cancer patients are really thinking.

Firstly, I don't see metastatic breast cancer as a "chronic disease".  I believe that to refer to it in this manner does a huge disservice to the work of the metastatic breast cancer advocates.  The "chronic disease" argument invalidates our concerns about current treatments and our very real fears of dying of breast cancer, and completely hides the fact that metastatic breast cancer patients still do not have a game changing drug designed to specifically prevent initial and new metastatic tumors. And the same could be said for many other Stage IV cancers actually.

What we do have is a long list of incrementally and temporarily successful drugs designed to shrink tumors, none of which provide a cure, and none of which are known to actually prevent new metastases.  The drugs buy us time, more for some patients, less for others, and there is no way to know which one's will actually work, for whom, and for how long.  So we just keep working down the list of drugs until we perchance get the miracle of N.E.D. (No Evidence of Disease), or as is more likely, we exhaust our options and then say enough is enough and end our lives apparently and invariably with "grace and dignity".   Is this really what "chronic disease" looks like?

In the metastatic breast cancer setting,  how is a "really long time"defined and what does "quality time" really mean?  I suspect that if a patient were asked, their definitions and understanding of these terms might be wildly different to that of their medical team and indeed that of family and friends.

"A really long time" in the world of chemotherapy drug development is termed "overall survival" and is generally measured in months, not years.  To the statistician, a metastatic breast cancer diagnosis might mean average survival of about three years.   To the actual patient, we say "screw statistics" and hang on for dear life to the belief that we're going to be the ones who beat the odds.  And some of us do, but there's also many that don't.  For me, the question of what a "really long time" looks like is something I prefer not to dwell on.  Hopefully it means years, maybe even a decade or two or three, but no one really knows.  I just hope that it is a "really long time".

And "quality time"?  Quality time to me means

• not having to go to chemotherapy every week
• not having to obsess over my bowel movements
• not having to wrangle with Nurse Ratched or Nurse Useless
• not having to deal with mystery secondary illnesses that of course could not possibly be related to cancer treatment
• not having to worry about cascade side effects of drugs taken to combat chemotherapy side effects and cancer symptoms
• not having to waste time dealing with health insurance and billing issues
• having a left arm that actually works and doesn't cause me pain 24/7
• having hair to brush and style
• not having to be ruled by an alarm clock and pills that must be taken on time
• not having my life put on hold every three months whilst we wait for scan results
• being able to sit in the sun without having to worry about chemo-induced sunburn
• being able to go on vacation without having to think about proximity to hospitals et al
• not having to ask family members to help me with household chores and grocery shopping
• not having to worry at forty years old, about the same issues that concern senior citizens
• having the energy to stay up past 10pm
• not having to worry full stop

Now there may be many of you who disagree with my reaction to this particular comment.  And that's fine.  I welcome the discussion.  We can all learn from each other.  So let's keep talking about this.  Let's add our voice and be heard in forums like #bcsm.   Hope to "see" you there for the next chat.

Every voice matters.

Now back to summer hiatus and some QUALITY time !