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!

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

  1. You deserve a whole fleet of hot wheels cars. You also deserve to be pain free, and if this medication will allow you to feel better…. take it take it. (you write so well…so clear. Thank you for sharing this. I learned a lot).

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  2. I am in awe of what you deal with (the photo of your kitchen counter has had me staring for at least ten minutes already) and so very respectful of how you deal with it. I also am resistant to taking medicine. I find myself giving in and then questioning myself. It is sometimes overwhelming to contemplate science when it makes me change what I think is fundamental to my identity. It seems like science should start with who I am. Instead, it can call on me to transform to survive. Thanks for sharing your journey. It transforms me, too, but in a way that feels miraculous because it is subtle and deft.

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    • Thank you so much for your kind words. They mean so much to me…
      I agree — it can be difficult to accept the new “normal” that cancer creates. I still wrestle with these issues. The medication one is also a big one for me. I am working on learning to give in to what I probably “need,” but it sounds as though you really understand that it’s often easier said than done! Thanks, friend!

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  3. Your distaste for meds is easy for me to relate to. I admire your willingness to reevaluate your situation. A recent round with a herniated disk made me face my own dislike for meds…I think I made things worse by being “non compliant”.
    Wishing you all the best as you continue your journey….

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  4. Girl, you deserve the entire collection of Hot Wheels–enough to need that blue carrying case with all the slots for the cars (do they still make that? My “little” boy is now 14 so I’m woefully outdated here). Love your blog and am looking forward to reading more.

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    • Aww, thanks so much!!! I do like Hot Wheels — my boys have an off-brand yellow case, so I don’t know if the blue one still exists, but I do remember it! Perhaps I’ll have to treat myself to some new cars. 😉

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  5. That is an impressive pile of medication; it looks like the contents of a Tour de France cyclist’s saddle bag 🙂 I’m a member of the anti- medecine brigade, too; probably because my mum told me I “had to get used to it” when I was little; we only bothered the doctor when I grew an extra head.
    On a different note, your posts are informative and helpful for all concerned. I’m learning a lot about a world that has affected many of the people I know who are patients, or are the families and friends of patients. Thank you.

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  6. My father had to get a job to pay the doctor in the Depression for removal of impacted earwax: my grandfather said he couldn’t afford it. The doctor’s professionalism, the lack of pain, and the sudden revelation we get when our swimmer’s ear is healed caused Dad to become a doctor.

    I would say that in the United States (you are in the USA?) there’s a new Puritanism about drugs and as a result for 31 years I never took any painkillers stronger than aspirin, and no “opioides” (drugs based on the opium plant whether in actuality or as a synthetic imitation).

    Like so many Baby Boomers, I preferred the “natural high” of endorphins…and the cancer sufferer should cultivate her endorphin release through exercise. I didn’t want to abuse alcohol or drugs in response to stress.

    But outside the USA morphine is routinely given at stage IV to older patients (I’m stage IV and 63) since the quality of the end of life is so important to reconciliation with family and happiness. As a result I have created two daily workouts adapted to my pain, which have hastened improvement from chemo, perhaps giving me a year or more of life.

    But thirty? 30? Life is so unfair. 60 is only relatively young, and I’ve packed a lot of adventure and accomplishment in my 62 years. Do not give up! Modern science keeps advancing. With regards to my cancer, the husband of the Burmese hero Aung San Syu Ki died two years after diagnosis of prostate cancer, but that was before the development of Taxotere, one of the recommended chemo treatments. With overall health from working out, I have survived as of yesterday one year from diagnosis.

    Breast cancer may parallel prostate in many regards.

    At thirty, I recommend you marshal and inventory positive facts about your health and write them down. The overall good health of a thirty year old and science are a mighty fortress against cancer cells: imagine them dying like flies. I hope this helps.

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    • Thank you for your comment… I am so sorry about your cancer diagnosis. 63 is also just too young. It sounds like you have come up with a good plan with your workouts. I’m glad to hear they have helped with both survival and some pain relief. I sincerely hope they help you squeeze as many good moments as possible out of life.
      Yes, I am in the U.S., so I understand your perception about this country’s reactions to painkillers. That has probably contributed to my own hesitation to take these drugs (well, in the past, at least).
      Your idea of keeping an inventory of positive facts about my health is a good one, but, unfortunately, though I am still relatively young, my overall health hasn’t been good for a while — which, we believe, actually hastened the cancer diagnosis (but that’s another story!) So between the ‘good health’ and science baskets, I’d have to say that I’m sticking my eggs in the science basket. 😉
      I am so glad to hear that you have packed a lot of adventure and accomplishment into your life. I am working on giving myself permission to live for the moment a bit more — and to be more of an adventurer.
      Thanks so much for your comment. Sending my warmest wishes your way…

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  7. Your post hit me like a ton of bricks. I can only imagine how it hit you, since your writing so eloquently leaves this up to the reader’s imagination. I have come to care deeply through your blog posts. I will offer all I can through prayer, for you and your little family. Now, feel the love from all of us and go make today very special!

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    • Thank you so much for such a kind and beautiful comment. I am deeply touched by your words, and I am so grateful for your prayers and warm thoughts. I have to say that I do feel the love from all of you & I am a lucky girl! Thank you… xoxo

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  8. Sunflower sister, make that sticker chart! Once u get to 50 stars, I’ll come visit. Better than a hot wheels car? I hope you think so ;).

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  9. I’m not crazy about taking meds either. But when they are necessary I do. There is no need for you to be in pain. Listen to your doctors and take the meds.

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  10. Thank you for sharing your journey ….wow you really are a brave woman !
    My thoughts are with you xox
    look forward to reading some more you truly an inspiration .

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  11. I certainly understand what you mean about all the medications and especially at your age. I know the sound of methadone makes you think of drug addicts but after my chemo I started going to a psychiatrist for my depression who is also a pain specialist. He thinks that methadone is an excellent pain medication and it’s not the way that drug addicts take it as a liquid when it’s in pill form. He prescribed it when I broke my hip after the chemo compromised my bones (in my 40’s-way to early for that), and it really worked and it didn’t make me feel drugged. The sound of it really scared me too. Also they have morphine in pills that allow it to get in to your system slowly so again it doesn’t feel like what you get in an IV when you wake up from surgery. It is amazing though how many meds this disease brings about. Once you start one, then there’s side effects from that and side effects from the next thing or pill and before you know it, well you certainly have the picture! Meanwhile the important thing is for you not to be in pain and not feel “out-of-it” while you have quality of life. Anyway I think you are super and I love your blog!

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    • Thanks so much, Susan! I think you are super, too, and I love your blog! Thanks for sharing your painkiller story. I’m sorry about your hip — and that this happened in your 40s! That is one of my fears, too, thanks to significant bone loss brought on first by the chemo and then by the early hysterectomy last year. Ah, the joys of this disease!
      I’m glad you were able to get adequate pain control after your break, and thank you for telling me about it. We went the morphine route coupled with the oxy I’ve been on because the second palliative care specialist I saw thought methadone was too risky for my heart given my history. I didn’t really know that was an issue, but I trust him. He said that if the morphine/oxy combo didn’t work, we’d switch off to methadone. Hearing your story makes me more open to the idea.
      Thanks for sharing — as I’m sure you know, it helps to hear from people who ‘get it!’ And thanks so much for reading! 🙂

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  12. I am so so so terribly sorry that you are dealing with this. Life is a struggle but wouldn’t we swap out some for others – like the non terminal kind. But for some reasons we may be being sent wandering sooner and further then we had planned. Thank you for sharing your reality and know that I wish you well. I trust you to know what drugs to take when.
    warmly,
    Marcy Westerling
    http://livinglydying.com/

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  13. We have just recently brought up P care again since my quality of life has been so low. I’m twenty seven and been on narcotic pain meds for over two years ranging all over the spectrum…lortab, oxycodone, fentanyl patches, morphine, dilaudid, and methadone. The methadone really bothered me and I flat out refused it after a month, and the docs wouldn’t listen or couldn’t get why I didn’t want to take the drugs they are handing out to recovering heroin addicts let alone having bottles of liquid methadone in my house which scared me. All I could think of was someone finding out and breaking in to steal it from us and hurting my family. I hate having to take all the meds, we have to put everything down a feeding tube, but since I’ve lost most of my gut absorption the meds don’t work half the time and the doses are kept dangerously high because their theory is that if we push enough then maybe there will be more relief (don’t really get that one). I’m scared because we are to the point that we have to switch everything to IV and I’ve always thought once you are on IV narcotics at home they are giving up, and I’m not ready to give up. I’m sorry for writing so much, I know I don’t have cancer, but I’ve related to a lot of what you are saying. I spend all my time seeing these “specialists” and it offers very little comfort. They tell me how sick I am like I don’t know and tell me that I’m too weak for the surgery we’ve been waiting months for so I could get rid of the stupid ostomy bag to collect the infection draining from my guts, they never talk in a positive manner, and I’m pretty sure it is only a matter of time before I yell at them that I am a twenty seven year old momma of a two year old and I’m not giving up. I know we have different diseases, but I relate to so much of what you say and honestly I helps me feel less alone. I feel like I’ve censored my own blog to protect people which is more isolating. You have my prayers and I hope that you are able to feel a better quality of life with P care.

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  14. Pingback: Why I Can’t Wait for My Colonoscopy | cancerinmythirties

  15. What a marval you are! Putting yourself out there, sharing your story. I can not even imagine who many people you have influenced or helped. You are a force for good (which doesn’t mean I think you are perfect and don’t have bad days).
    It’s been several months since you had that appointment. I hope you are comfortable and started the methadone … it can be such a good thing and is not just for heroin addicts (sounds like a commercial).
    That’s an impressive picture of your kitchen counter.

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    • Thank you so much for your kind words. I am truly touched and grateful. And thank you for wishing me well and for sharing your thoughts on methadone. I’ve been meaning to do a Part III post, but just haven’t managed it! I opted for the morphine/oxy combo, but am actually going in to see the specialist in the morning to see whether we need to make a change…
      Thanks so much for reading and for brightening my day!

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