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Palliative Care at 30-Something : What Does it Mean? (Part II)

This is a long overdue post, so I will have to backdate it…  I’ve actually been back two times since!

Photo Credit: pcdsys.com

Photo Credit: pcdsys.com

See Part I here.

Part II:  [April 13, 2013]

First Visit:

So I had my first visit with Palliative Care a few days ago. This Palliative Care department has been touted as a great group. They are located in the Cancer Center at the largest and most lauded hospital in our region, so I had high hopes.  I was both nervous and excited about the appointment because I had also heard the director of the department speak at a breast cancer conference a year or so ago.  It was a refreshing talk and I figured that if everyone shared his attitude, this was going to be an informative appointment at the very least.  And, at most, it could change my life in some way.

It got off to a slow start.  The specialist took a good look at my medical record — every last bit of it is available through the hospital’s online database.  Then he asked a series of questions to ascertain what my life quality is like these days.  We discussed the ‘why’ behind my oncologist’s referral.  He did a physical exam and then talked with me about a treatment plan.

Before you read on, I will let you in a little secret.  I used to be what my past doctors referred to as “medication non-compliant.”  I did not (do not) like to take drugs — especially painkillers — unless I REALLY needed to.  And I would just go off pills just because I didn’t want to take them anymore [despite those yellow and black warning labels that said scary things like, “Do not discontinue abruptly,” or “Do not skip a dose of this medication.  Serious complications could occur.”]  I may have pretended to be a good patient, but I was not.

This newsflash may be a little/lot surprising when you look at the list of medications I am currently — and dutifully — taking.  Since the two hospitals and the independent cancer center I go to all share the same electronic charting database (e-Record), a complete list of all of my meds is available in my virtual chart.  And every time I sit down with any of my doctors, that list of meds is reviewed and I am asked if I am taking everything as prescribed and a box is ticked to indicate my answer for each. There is nowhere to hide.  And they print this list for me every time I walk out the door, so it’s easy for me to just whip it out to count the number of prescriptions I’m on.

The back corner of my kitchen counter...

The back corner of my kitchen counter…

21.  I just counted 21 different prescriptions.  That is a lot of pill bottles for someone who doesn’t like to take drugs. And a lot of pill bottles to open a few times per day. But life has changed in every way in the past three years.  Taking pills I don’t want to take is just par for the course. But I still haven’t given in to the painkillers entirely.  I say that I take them as prescribed.  But I don’t.  And I’m sure my oncologist has figured that out.  If I took the percocet as prescribed, the 180 pills she writes for each month would only be enough to get me through 2 weeks.  But somehow I always manage to stretch them all the way to our next visit… I’m sure she’s noticed that.

So when I decided that I would be completely honest and tell these doctors what I actually take, I figured it would be a painful appointment. But it wasn’t. Dr. H thought that continuing with the Percocet (Oxycodone) I finally surrendered to taking two summers ago was a good plan.  But he said that it would be important for me to begin taking the dose actually prescribed. He also said that rather than waiting until the last possible moment to take a dose, I should be on a regular schedule of every 4-6 hours.  The premise is that keeping your pain under control is a much healthier way to live than chasing the pain and poorly managing it.  It is apparently much easier to keep pain under control than it is to get it under control. But I knew all this from the countless times it had been explained to me in appointments, after surgeries, in the hospitals, etc.  This was just the first time I was really prepared to listen.

Dr. H also asked that we increase my Neurontin (Gabapentin) prescription from 300 mg to 600 mg per dose. 3 times per day and at bedtime.  This would help with my nerve pain and issues (left over from Taxol chemotherapy and a left-sided radical mastectomy — I did have both breasts removed, but the mastectomy on the right side was far less invasive).  It might also help with the hot flashes and energy-sucking night sweats I have been experiencing since an emergency hysterectomy / salpingo-oopherectomy last year at the age of 35. Dr. H said that we would do this for a few weeks until I had adjusted and then we could increase.  He also said that when I returned, we would discuss the addition of methadone or morphine to the schedule.

Whoa.  What was that?  Methadone or morphine?  Really?  From what I’ve heard of this group, it’s difficult to get drugs out of them, so I have to say that hearing this was a bit of a shocker.  Dr. H stepped out to get the Director of the group.  I figured Dr. Q would set the record straight and take the morphine and methadone off the table.  I mean, I am 30-something years old, I shouldn’t be preparing for a life on these drugs, right?

Photo Credit: Stinkin-Thinkin.com

Photo Credit: Stinkin-Thinkin.com

Then my doctor’s boss came in, reviewed my chart, and gave his take on what the treatment plan would be.  It matched up identically.  Even the morphine/methadone part.  They seem to feel it is time for this and that there is no point in suffering needlessly anymore.  That was a sobering thing to hear.  I will have to do some research for next time because all I know of methadone has to do with recovering heroin addicts lining up to get their methadone so they can cope with the drug withdrawal. I’m hoping they have something a little different in mind for me?!

In the meantime, I am going to work on getting on the prescribed schedule and on being a decent patient!  Something tells me that I may have to add a column with my name to the sticker chart I keep to help the boys behave.  Maybe if I take all my meds as prescribed I can get a Hot Wheels car, too!

Palliative Care at 30-Something. What Does it Mean?

Palliative Care Integration Model cancerinmythirties.wordpress.com breast cancer thirties 30s 30's death dying hospice

Palliative Care Integration Model
Image Credit: University of Alabama School of Medicine

If you’re like me (until fairly recently, anyway), when you hear the words “Palliative Care,” you think HOSPICE.

Hospice is a scary word in the cancer world.  At least that’s been my experience.  In Cancerland, nothing comes after hospice.  That’s it.  Game over.

So when you are a 30-something-year-old and you hear your oncologist tell you that she wants you to see a Palliative Care specialist, your heart might skip a beat.  I know mine did.

For me, I think it is because I was there as my grandparents went through cancer and treatments and eventually ended up on their deathbeds.  I was there when hospice began for them.  And the fact that the start of hospice coincided with the start of their palliative care was not lost on me.  So it’s only natural for me to associate one with the other, right?

Things were different years ago.  My grandmother suffered with her shiny bald head marked with surgery scars and radiation tattoos and burns from the treatment for her brain cancer.  She suffered with no relief until her poor shiny, wounded head lost its luster.  She suffered until hospice started.

The hospice folks came into her home, set up a hospital bed in the dining room, and they began her palliative care, finally, with some heavy duty drugs.  But she suffered until that point.  And even afterward because the pain control wasn’t great.  It was almost a relief when she slipped into a coma and finally died because it was so painful to watch her suffer and to hear her moan in her sleep when we knew that all hope was lost.

My grandfather’s scenario was different.  I’ve blocked out the length of time he actually suffered with lung cancer.  I was there, so I should know.  But it is too difficult to remember how long the cancer actually took to kill him.

What was different about his experience?  When he was ready for hospice, they didn’t come to us.  We moved him to a hospice.  This was where his palliative care began.

But it only lasted for a day.  We moved him to the lovely hospice home, they started him on morphine and gave me special swabs to keep his cracked lips moist.  The volunteers were warm and comforting and did their best to keep my grandfather pain free.  He died that night.

So it’s likely that my ideas about palliative care and hospice are rooted in my experiences.  I learned that palliative care was end-of-life care. But this is not true.  At least not anymore. So what is it, exactly?

From the Cancer Center’s brochure:  

Palliative Care is medical care focused on relief of the pain, symptoms and stress of serious illness.  The goal is to help people live comfortably and to provide the best possible quality of life for patients.

Patients struggling with the uncertainty of serious illness need comprehensive care and support.  They need to know they aren’t alone.

What Can You Expect from Palliative Care?

  • Relief from distressing symptoms such as pain, shortness of breath, fatigue, loss of appetite, difficulty sleeping
  • Improved ability to carry on with your life
  • Improved ability to tolerate medical treatment
  • Better understanding of your medical condition and medical choices

***

Doesn’t sound so bad.  Sounds good, actually.  So I’m far less apprehensive (and maybe a little excited?) about my appointment at 8:30 this morning.  And I feel pretty lucky to be going to the Cancer Center at the best hospital in our area to meet with a specialist on their team.  Of course I’d feel luckier to not be 30-something and in need of their services, but I’ll take what I can get at this point.

I will let you know how it goes…  Though Percocet (Oxycodone) has been a faithful friend for a long while now, I’m hoping there might be something that works a little/lot better — and that’s less liver toxic — in my future.

We shall see…  Good night…