Tag Archive | palliative care

Silence Isn’t Golden — and — Weekly Photo Challenge: Inside / Little Dog Inside Big Dog

cancer in my thirties breast cancer 30s 30's dog dogs

There have been times in my life when I have agreed with the title of that old song, “Silence is Golden,” by The Four Seasons.  But my silence here has not proven to be one of those times.  As the days following my last post crept to weeks and then to months, I couldn’t believe that so much time had passed.  But I still felt powerless to do much about it.

Call it the result of unrelenting exhaustion.  Call it the result of a muddled mixture of intense pain and a haziness induced by strong opioid painkillers.  Call it an inability to balance new/worsening symptoms with life and its demands.  Call it what you will, but whatever it was, I just wasn’t able to pull myself through “it” to find the energy and space to write to you.

I value our time together.  I value our relationship.  And I didn’t want to just pop in to do a quick, crappy post while I was in the midst of feeling as though I was caught in a tailspin.

YOU:    “So, is it over?  Are you better?  Is this going to be a terrific post that was well worth the wait?”

ME:      “No.  No.  And no.”

YOU:    “Aw man, I was hoping for something riveting and inspiring.”

ME:      “I’m sorry, this post will be neither.  But I figured that if I waited any longer, the gap would just widen and it would be even more difficult to return.  So I am here, for better or worse, with a crappy post just meant to let you know that I have missed you and that I do value our relationship — probably more than you’ll ever know.”

ME:      “And, given the nature of some of the emails I’ve received from some of you, I felt that some of you might be wondering if I’d gotten much sicker and perhaps moved on to the great blue yonder.  To be honest, I would wonder the same thing, especially because some of my “virtual” cancer friends (cancer bloggers or online breast cancer community friends) have disappeared in this way when they’ve died.  Silence.  Then, after a few days or weeks or so, a husband or best friend or mom will pop in to say, “Sorry, _______ died last month.  I know she’d want you to know.”

YOU:    “Well, I didn’t want to say it, but, um, yes, maybe “that” thought crossed my mind.  This is a cancer blog, afterall!”

Okay, all kidding aside, I wanted/needed to say hello.  I wanted you to know that you are still in my thoughts.  I wanted to respond to the kind emails and messages I’ve received.

And I wanted to apologize for such a long silence.

Sure, I’ve felt crappy.  Sure, I’m struggling to manage life and the boys and everything else while feeling so cruddy.  But you’ve come to mean a lot to me and I owe you more than this silence.  Plus, this is a cancer blog, so I should be blogging about feeling crappy and about the ins and outs and ups and downs of this whole experience.

I should.

I know I should.

But I wage this positive vs. negative battle with myself all the time.  In my day-to-day life, I try to be positive and upbeat because this is what is expected of me.  So it is difficult for me to give myself permission to be “Debbie-Downer” in my day-to-day.  And sometimes that cup runneth over to my blog, too.  If you’ve been reading all along you know that this doesn’t happen often — I usually don’t have much trouble “telling it like it is” and spreading some gloom here! — but it does happen sometimes.

I’ll try to elaborate a bit more on how life has been soon.  But for now I wanted to end the silence.  Close the gap.  Get back on the horse.

And I wanted to thank you for sticking by me.

I’d also like to know how you are doing…  During my silence I have not only been a bad blogger, but a lousy blog reader.  But it isn’t because I haven’t thought of you.  In fact, I enjoy reading your blogs far more than I enjoy creating posts for my own, so I’m certain I’ve missed you much more than you’ve missed me!  So if you have a moment, please drop me a line / leave me a comment to let me know how you are — and I promise to pop over to visit your blog soon.

And I will be back soon to fill you in.  Even if I just write crappy one paragraph posts.  I’ll shoot for “quantity vs. quality” rather than the “neither” I’ve been giving you!

p.s. For old times’ sake, I’ll include a few photos that happen to be in line with The Daily Post’s Weekly Photo Challenge.  Okay, “on purpose” rather than “happen to be.”  But you know how I like pictures!  This week’s challenge topic?  “Inside.”  Participants are asked to photograph “something” inside “something else.”  [There’s more to it than that, but I’ll give you the skinny version in case you are tired, too!]

You know how I love my dogs, so I’m giving you photographs of “Ginger Inside Kevin.”  Or “Little Dog Inside Big Dog,” because I refer to them as “Big” and “Little.”

SONY DSC

Kevin is a Heinz 57 rescue who we brought to live with us after my dogsoulmate, Mattie, my mini schnauzer, died of cancer in 2009.  Ginger was a “Christmas/chemo/mastectomy/more chemo/radiation/and still more treatment gift” my sister gave me after I’d had a bunch of chemo and my bilateral mastectomy, and then was then destined to go through more chemo and radiation and other treatments.  My littlest sister, Laura, thought she would be a wonderful snuggler and that she’d make it easier to get through the difficult days, so she wrapped her up for Christmas…  And what a wonderful gift she was/is.

Well, ever since Ginger/Little’s arrival, she has ruled the roost.  Though significantly smaller than Kevin, she is definitely the alpha.  From the very beginning, she would climb into or onto Kevin and he wouldn’t move a muscle.  To this day, if she climbs into his curled up body, he stays in this position until she is ready to get up — mostly because she’ll bark at him if he moves an inch!  And since they are coincidentally almost identically colored, it is difficult to tell where one ends and the other begins.  Most pictures of the two of them together look as though I’ve snapped a photo of Kevin with a small dog-like growth protruding from his neck or back.

A looong explanation for a few photos!:

breast cancer in thirties 30s 30's dog dogs ginger kevin

Can you find Ginger?

breast cancer thirties 30s 30's

breast cancer thirties 30s 30's dog dogs

Once in a while, Kevin builds up the nerve to *attempt* to knock Little off his chair. He is never successful…

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***Good night and thank you for visiting.  Thank you for helping me through the dark days, even when you don’t know you are doing this…***

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Why I Can’t Wait for My Colonoscopy

Photo Credit: abcnews.go.com

Photo Credit: abcnews.go.com

You’re probably wondering what’s wrong with me.  Why would anyone in their right mind look forward to a colonoscopy?

It’s simple.  I can’t wait for the “prep” to be over.  But it may not be for the reason you are thinking…

Of course the prep itself is rotten.  It has been three days since a morsel of food has crossed my lips.  And drinking this God-awful stuff that wrenches your insides and makes you feel as though you are tethered to toilet is no picnic.  And because Palliative Care (see Palliative Care at 30-Something: What Does it Mean? Part I and Part II) has me on around-the-clock opiates, I was required to do the “Extended Preparation” which includes “extra” days of not eating and of a clear liquid diet, a few different types of unpleasant liquid solutions that make you “go” with extreme urgency, pills that also make you “go,” and enemas.  Did I mention I’ve gone 3 days without eating any food and have been consuming only clear liquids?**  Can you tell this one is getting to me

Photo Credit:  pregnancy.lovetoknow.com

Photo Credit: pregnancy.lovetoknow.com

Right now I’m trying to drink the last 4 liters of yucky stuff from the pharmacy in the prescribed 3 hours, but I can’t keep it down.  I have been vomiting so much that I’m not sure there is anymore liquid to throw up — until I throw up again.  I stop drinking entirely this afternoon.  And then I have to give myself 2 enemas in the 2 hours before the procedure, holding the contents of the enema bottles “in” for 15 minutes per bottle before I can go to the bathroom.

If you’ve ever had a colonoscopy, you are probably nodding your head now.  You know how rotten the prequel to this procedure can be.  Or maybe you’ve blocked it out of your mind and forgotten?  If so, I’m sorry for reminding you.

I must admit that I had forgotten.  Tucked the memories of my last “clean out” neatly away in my brain.

Okay, really what happened was that they were replaced by much more traumatic scenes. The last time I did this it wasn’t for a colonoscopy — I honestly can’t recall my last one, let alone the prep.  I just remember waking up shocked that I was dressed and asking who had put my underwear back on.  The answer was “me,” but I was so out of it from the anesthesia that I had no recollection of the day’s events.  Sounds like spring break gone bad!

No the last “prep” of this kind that I am talking about was for my hysterectomy and salpingo-oopherectomy last year.

It’s no wonder the prep is not what I recall about the events leading up to this surgery.  I had complex pelvic masses.  One was so large that you could feel it when you touched my belly.

I needed to have my right ovary removed the day after Halloween two years ago thanks to the side effects of Tamoxifen* [see below].   The ovary was filled with a crap-ton (urbandictionary.com defines a crap-ton as “4 shit loads”) of septated cysts.

And here I was facing the prospect of losing my remaining ovary and my uterus.  At the age of 35.

A part of me wanted to be sure of what they were seeing before I went under the knife again.  This was the part that didn’t want to have to go through another major surgery and recovery.  And this was the part that was still holding on to the hope of giving birth to a little girl, the daughter I had dreamed of having from the time I was a little girl myself.  It was also the part that wanted to be absolutely sure of what they were seeing before I let them cut into me again.  And this was the part of me that was just tired of all of the cancer crap.

And then there was the part of me that wanted to shake some sense into the aforementioned part.  This was the part of me that, after each scan or exam, grew more and more fearful that what I might be dealing with was ovarian cancer [breast cancer increases this risk], or ovarian mets (metastasis) from the breast cancer to the ovaries.  I was also dealing with the concern that I could have a new primary cancer in my uterus.  I say a new primary rather than a metastasis in this case because Tamoxifen upped my risk of developing uterine cancer.  “Tamoxifen acts as an anti-estrogen in breast tissue, but it acts like an estrogen in the uterus. It can cause the uterine lining to grow, which increases the risk of endometrial cancer.” [Source: cancer.org]

In a short period of time I had multiple gyn exams, transvaginal and abdominal ultrasounds, an MRI, and a CAT scan.  Each of these tests confirmed the presence of these complex masses.  And they were growing.

At my last ultrasound appointment, the technician asked me to stay on the exam table while she went for the doctor.  When they came into the room together, my doctor told me that I needed to go to the hospital immediately, and she sent me to the emergency room.  I remember scrambling because it was a Tuesday afternoon and I didn’t know how long I would be in the hospital, but I knew it would be long enough that I would need to find somebody to pick my boys up from elementary school.

Another CAT scan was performed in the Emergency Room.  It didn’t look good.  The thought that these masses could be ovarian mets or ovarian cancer scared the hell out of me.  And there wasn’t really a decision to be made.

After meeting with the leading GYN oncologist in our area, my surgery was scheduled for the next week.

But a part of me wondered if there was any way out of this.

And then I began hemorrhaging just before my surgery.  There was so much blood.  I remember trying to get into the shower before an appointment.  It was just a few steps from where I disrobed to the shower, and just with those few steps, I managed to cover the floor with a large pool of blood.  I was as pale as a ghost.  And I felt like I was a stone’s throw from becoming one.

When I went in to see my regular gyn, she was clearly concerned that this was further evidence that I might have uterine cancer.  She did a biopsy that day and prescribed drugs that would help to lessen the bleeding until my surgery.  They didn’t really help, so I was almost “thankful” that my hysterectomy was just around the corner.

My gyn oncologist removed everything that was left of my female parts, with the exception of the one that starts with a “V,” but even “it” did not come out unscathed.   Since he took my cervix, the surgeon had to use the top of the vagina to create what’s known as a “vaginal cuff.”

Though I had signed all of the consents prior to my surgery, including the special one you have to sign when you are of childbearing age (indicating that you understand that you are undergoing surgical sterilization), I was still shocked to wake up to find that everything was gone.  Everything.

I spent 4 days in the hospital after the surgery.  It was a difficult 4 days, emotionally and physically.  I required blood.  I needed enemas and catheterization.

I could barely get out of the hospital bed, let alone make it down the hall — for days.  {The blood transfusions helped with this, thankfully.}

And I had a massive migraine.  As a chronic migraine sufferer, I am no stranger to headaches.  But this was worse than any headache I had ever experienced.  The consensus was that the cause was linked to the fact that my estrogen levels had soared in the year before my surgery, and then, suddenly, plummeted as a result of the surgery.  And nothing would alleviate the pain.  Not the morphine drip, not the oxicodone or the oxycontin, not the dilaudid.  Nothing.  I needed my hormones back.

A normally positive person who tries to see the good in everything, I lay in that bed, broken and empty, as I awaited the pathology report.  I felt as though I was a shadow of my pre-cancer self.  I pictured Hansel and Gretel walking on that path through they woods, leaving bits of bread behind so they could find their way back home.  I had been leaving bits and pieces of myself behind on the long and winding road since my diagnosis.  But I knew I would never find my way back home.

So doing this “colon prep” has been especially difficult.  Not just because it’s physically rough, but because it has made the memories of my hysterectomy flood back through gates I had sealed shut soon after the surgery.  As the old saying goes, “Denial (The Nile) ain’t just a river in Egypt.”

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There is more to this story.  But I will have to save the remainder until I am feeling better.  Thank you for reading…

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*Tamoxifen is an antagonist of the estrogen receptor in breast tissue via its activemetabolite, hydroxytamoxifen. In other tissues such as the endometrium, it behaves as anagonist, and thus may be characterized as a mixed agonist/antagonist. Tamoxifen is the usual endocrine (anti-estrogen) therapy for hormone receptor-positive breast cancer in pre-menopausal women, and is also a standard in post-menopausal women althougharomatase inhibitors are also frequently used in that setting.[1]

Some breast cancer cells require estrogen to grow. Estrogen binds to and activates the estrogen receptor in these cells. Tamoxifen is metabolized into compounds that also bind to the estrogen receptor but do not activate it. Because of this competitive antagonism, tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor.

[Thank you, Wikipedia, for this Tamoxifen info!]

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**In case you are interested, here’s the list of approved clear liquids:  water, Sprite, apple or white cranberry juice, clear or yellow Gatorade/Powerade, chicken broth (nothing in it — NO beef broth), black coffee/tea (no milk or cream), Jell-O (yellow, orange, green only), or popsicles (not red or purple).

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P.S.  As much as I’ve struggled with the prep, I know it’s worth it.  IWith symptoms like pain and rectal bleeding (and with my cancer history), I know it’s better to do this than risk the alternative.  Please don’t let my post deter you from having a colonoscopy.  The “extended prep” is usually not necessary, and the procedure and the prep are over before you know it (and I think my reaction to it is rare?).  They are also far easier than dealing with cancer would be.  So please follow the recommended screening guidelines and do this important test (generally beginning at age 50).  In some cases (like mine), a colonoscopy may be necessary before you turn 50 (or in between the recommended 10 year gap from screening to screening).  If you have a family history of colon cancer or if, like me, you are experiencing issues (i.e. rectal bleeding or a change in bowel habits), please consult your doctor to see if you are in need of a colonoscopy.

“Almost all colorectal cancers begin as a small polyp. If a polyp is found during colonoscopy, it will be removed and this prevents the polyp from every turning into cancer. But if you don’t have your colonoscopy in the first place, then you are throwing away the chance to detect polyps when they are easily treated.” [http://www.columbiasurgery.net/five-reasons-not-to-get-colonoscopy]

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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

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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…