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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…

About My Brain

brain lesion cancer breast metastasis

So I fell down the stairs again today.  I hit my head pretty hard.  And I managed to land on a section of my back that was already hurting quite a bit.

This reminded me that I never posted a “brain update” after my last oncologist entry earlier this month.  I guess I didn’t really forget to write about it, I just didn’t because I didn’t know what to say after my appointment with the neurologist the next day.

I’m still not really sure what to say.  When I arrived at the neurologist’s office, I took a seat in the waiting room with a double-sided questionnaire about my symptoms.  I pretended to fill it out, but I was just sitting there lost in thought.  I had just filled the same paper out a couple of weeks prior and my answers probably hadn’t changed, so I thought the time would be best spent staring off into the distance, clipboard on my lap and pen in my hand.

I only had a few minutes of quiet before my neurologist walked out into the big waiting room, purse on her arm.  She said ‘hi’ and said she’d be back for me as she walked out of the door.  The nurse came out moments later and took me back to the vitals station and proceeded to take my blood pressure, etc.  Before he finished, my doctor was back.  She said she’d take it from there.  She walked me back to the scale, took my purse and coat, and I stepped up to be weighed.  We then walked back to the room.  She carried my purse, her purse and my coat and chatted with me during our short walk.  She set our open purses down on her desk and I took a seat next to her.  She told me she was glad I came in because she wanted to show me my MRI so I could see “IT” for myself.

We chatted as though we were girlfriends out having a coffee date and as though we were discussing our husbands, kids, dogs, and the piles of laundry waiting for us at home.  The only difference was that the coffees were waters, the table was an exam table, and we weren’t talking about what we were making for dinner.  We were talking about the lesion in my brain.

She showed me my brain MRI.  There was the lesion.  And then the same area on my MRI from about 8 months ago.  No lesion.

Not really coffee shop conversation.

When I asked if it was a metastasis, she said that it may not be malignant.  She said that they typically see a lot of “mass effect” with malignant tumors.  (*Mass effect is damage to the brain due to the bulk of a tumor, the blockage of fluid, and/or excess accumulation of fluid within the skull.)  She said that this ‘mass effect’ was lacking on my MRI.  I asked, “Could the mass effect be lacking because it is such a new lesion?”  Maybe.  “But it could also be because it is something benign?”  Yes, definitely a possibility.  Looking at the lesion’s shape, I wondered, “Could it be because I swallowed a small grape and it went the wrong way and lodged in my brain?” But I figured that was pretty unlikely!

cancerinmythirties.wordpress.com brain cancer lesion thalamus breast cancer

The thalamus is the red area

The kicker (well, one of them!) is that it is deep in my brain — within the thalamus.  Not an easy place to access for biopsies, etc.  So no easy way to know for sure what it is.  My neurologist feels the best way to proceed is to wait a couple of months and repeat the MRI.  If it is malignant, we should expect changes.  If I have an increase of symptoms, it sounds like we can do it sooner.

Then there’s also that abnormal EEG that prompted the MRI.  So I don’t really know what to think.  On the one hand, I feel sick to my stomach because the cancer may have metastasized to my brain.  But on the other hand, I’m really hopeful that it hasn’t.  And at this point, I guess I should feel pretty grateful that it’s only a maybe and not a definite.

Cancer is the gift that keeps on giving…

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In case you were wondering what the thalamus does:

**”The thalamus has multiple functions. It may be thought of as a kind of switchboard of information. It is generally believed to act as a relay between a variety of subcortical areas and the cerebral cortex. In particular, every sensory system (with the exception of the olfactory system) includes a thalamic nucleus that receives sensory signals and sends them to the associated primary cortical area. The thalamus is believed to both process sensory information as well as relay it—each of the primary sensory relay areas receives strong “back projections” from the cerebral cortex.

The thalamus also plays an important role in regulating states of sleep and wakefulness.[9] Thalamic nuclei have strong reciprocal connections with the cerebral cortex, forming thalamo-cortico-thalamic circuits that are believed to be involved with consciousness. The thalamus plays a major role in regulating arousal, the level of awareness, and activity. Damage to the thalamus can lead to permanent coma.”

* Information from: http://www.mayfieldclinic.com/PE-BrainTumor.htm

** Information from: http://en.wikipedia.org/wiki/Thalamus

4 Months…

So I saw my oncologist today for my 6-week check-up.  I was expecting it to be a nice little ‘here’s what’s happening’ and ‘goodbye & congrats’ session.  It pretty much was. I went through a rundown of my symptoms and she asked me questions and updated my profile in her computer.

Then she told me she had seen my abnormal EEG results and asked what my neurologist was doing as a ‘next step’.  I told her about the MRI I had at the end of last week and said that I had an appointment with the neurologist tomorrow and that I expected to discuss the results with her then.  Since my oncologist and neurologist share a hospital and a computer system, she was able to pull up a 1 sentence blurb taken from the full report.

It mentioned a brain lesion.  But I guess that could mean a few different things — and that it doesn’t necessarily mean that it’s a brain met (metastasis).  But thinking of this in the context of the abnormal EEG, my mind can’t help but “go there.”  For more detail, I’ll have to wait for tomorrow’s appointment.  I kind of wish she hadn’t brought it up.  But I’m sure she wanted to see what the preliminary report had to say at least.  You see, she was headed out on maternity leave after my appointment today and I won’t see her again until February.

So we finished the appointment with a quick exam and a discussion of who will be covering me and what her plans are for me during her leave.

I hugged her, told her (honestly) how happy I was for her, and handed her a card and a wrapped box containing a lovely little pink dress, a dress I had actually purchased for the baby girl I was hoping to have before all of this began.  Of course I did not share this last bit of information with her.  Nor did I not mention that she had become a part of my routine and that I am grateful for her role in killing my cancer.  And I certainly did not tell her that I will miss her while she was away.

And I did not mention the “what if” that crept into my consciousness as we hugged and I realized that I would not be seeing her for 1/3 of a year.  But I knew it was there.

I thought about a couple of women I had come to “know” through their posts about breast cancer.  They both learned that their cancers had returned a couple of months ago.  But they were still hopeful.

And now they are gone.  They died.  A few months ago they thought they were doing fine.  And mere weeks later, they are gone.

I wish I could say these lovely women were the first people I had heard of this happening to.  The first people who have had their cancers return or progress this quickly or aggressively.  But, sadly, I cannot.  Not at all.  You just never know with this disease.

I try not to think about the possibility of this happening in the context of my own life/death.  And most of the time I don’t.

But I am only human.  And at times like these, at times when I hear of sudden losses and the fragility of life hits me like a slap in the face, or when I can’t help but wonder if maybe that nagging pain or that headache that won’t go away is “something,” it is difficult not to let these thoughts creep in in the quiet space of a dark night.

As I walked out to schedule my next appointment, not with the oncologist I had come to trust and rely upon, but with one of her colleagues, I thought about how much could change in the 4 months she would be gone.

Of course a great deal will be changing for her.  She will be bringing a new life into this world, expanding her family, and doing and experiencing all of the things that are associated with that.

And I… Well, I will be trying not to die.