These last couple of days I must confess, that I have been about the furthest thing from a ray of sunshine beaming with optimism, wit, courage and strength. It would probably not be too far a stretch to believe that there really is a little black thundercloud complete with those little rhythmic zapping lightning strikes ala The Weather Channel graphics centered and hovering about 2 inches squarely above my head following me around.Maybe I am long overdue for another meltdown of epidemic proportions...a wailing, whining, blubbering hissy fit that would be more fitting of a toddler than for a 35 year old woman...But at times, that is about what I feel like doing...Waaaah, waaaah, WAAAAAHHHH!
Then again, maybe it is PMS.
I don't know...All I know is that I have run the complete gamut and spectrum of emotions, good and bad within the last few days. Flipping out and going ballistic over the cable modem deciding to go on the fritz (Pass the Xanax), bawling like a 3 year old over my old 13 year old cat belching out a 3 foot line of regurgitated mess on my carpet for the 4th time in one day, skipping like a loon around the house and twirling around like I did when I was 5 over the fact that the pain meds actually knocked down the pain to a respectable, bearable and dare I say it, almost normal level?
Who knows...Maybe there is the very real possibility that I am a rapid cycling bipolar patient and have just been going undiagnosed all these years.
Actually, even just bringing up the pain medications, despite the fact that they are now helping tremendously, stirs up a whole host of negative emotions for me these last couple of days. A sore subject now, to say the least. Like having a molten hot poker jabbed into and twisting around into a not quite healed wound.
Here is an example of my not completely rational behavior and reaction to something that I am just hoping can be chalked up to a misunderstanding...To my overwhelming tendency to read too much into things...To my even stronger tendency of late to be slightly paranoid...
I was having one of those days yesterday...You know the kind where if there is something that is going to crawl up under your skin, drive you completely batshit and fry the very last nerve you have left, it can and does occur...at times, without mercy. I was already minorly annoyed over the prospect of 20 degree below average temps and snow showers over Easter for Christsakes. I mean, come ON! *see post far below about my sheer detestability factor to wintery like weather*
I won't bore those of you who actually read here, and brave this blubbering and at times meandering babble that I am prone to at times by stating all the other typical yet irritating shit that plucked on my one last nerve and snapped it throughout the course of the day yesterday...
But.
Then I happened upon a post on MPIP. I don't remember who the poster was now, but in given my *hopefully* paranoid and semi-delusional behavior patterns as of late, I am hoping I was just misunderstanding things and I was NOT in fact being dealt out a JAB/insult about my drug seeking junkie type behavior (*MAJOR tongue in cheek statement here) RE: My pain doc post and his ultimate response about my having to beware of docs thinking I am one to "chew" through narcotics without regard to instruction and potentially be labeled a problem patient.
NOTE: I am in no way intending any offense to the pain doc, as I highly respect his sage advice and willingness to stick around and help out so many MPIP'ers when in need of advice/help with pain management.
But this other poster made a statement about not wanting to be misjudged about being a Pain management problem child.
WTF?
Here I sit...hoping like hell that this post is in no way related to my previous post, praying that 90% of the MPIP population does not in fact believe me to be some sort of junkie who is exhibiting the first signs of drug seeking behaviors.
Let me just clear something up for all those doubters who may be among the ranks of people who may have quite possibly questioned this offensive assumption based on less than half of the actual story.
Just for the record, wierd and whacked though it may seem, my radiation oncologist gave me the lowest dose of those meds...and actually instructed me that I would most likely have to take them "more often" and to "let me [him] know how many I actually had to take so he could use it as a guide to give me something stronger." Believe it or not...Believe what you will...Shit...even my husband did a double take when he heard the doc say that....
I have given birth to two children, one of whom took 29 looooong hours to bring into this world, had 5 surgeries, some minor, some MAJOR>...and I mean MAJOR (Isolated Limb Perfusion/deep lymph node dissection)...and in every case, I could not STAND to stay on that medication any longer than absolutely necessary...I would always taper down the dose ASAP and each and every time, I would have leftover medication. Just for the record, I would rather be experiencing a liveable amount of pain and still feel totally straight in my frame of mind, totally with it, and able to perform all my normal day to day activities as soon as I could. The last thing I could ever stand was to feel like I was in that semi-catatonic narcotic induced haze and stupor as a trade off for complete pain relief.
But hell...I know I am blowing this WAY over the top, out of proportion. I don't even know why I feel compelled to justify myself...feeling as though I have been put on the defensive by something I hopefully completely misunderstood.
I know...I have probably gone completely off my rocker, lost the majority of my marbles, gone off the deep end....Whatever the case may be...
My head ain't screwed on quite right lately.
I just can't deal with this constant need, demand and pressure put on us as cancer patients to suck it up, be tough...smile ear to ear while melanoma could be eathing my insides out (I know...horrible visual, but I have envisioned it...and worse...) Be that towering and bionic pinnacle of admiration, inspiration and strength through the pain, the extreme fear...at times, crippling fear of that which we never want to think about.
It's bullshit.
I know. We all know. Yet we are compelled to show the world only the most desirable traits of ourselves...and never, under any circumstances, even if you are bleeding out the eyeballs, be negative or weak. But I choose to live in reality.
Here is my ultimate fear. It goes without saying. Literally. That elephant in the room. That nagging voice, a whisper on the wind...the one that threatens to drive you mad...That too bright neon sign that sears an imprint within the cortex of your brain...
It is one word. One concept. A given in life. Yet something not a one of us wants to face up close and on a personal level.
Death.
Hell, even I shut that crap down quick with comparable lightning fast speed to which it popped into my overly addled mind to begin with.
And as for the "happy meds" as I call 'em? More specifically, the Xanax; Shit...I'll be the first to admit it. I needed 'em. Probably a whole shitload of time longer ago than my stubborn ass would have allowed me to break down, cave in, and concede to accepting the script from the doc.
Good Lord above, I don't even want to contemplate the completely negative impression people would have of me if I honestly admitted to seriously considering dabbling in the realm and possibilities that could be brought on with a cannabis induced haze.
God Forbid.
To those of my dear and closest friends or family who have actually managed to torture themselves by making it this far down into this, my exhibition of my seemingly demonically possessed and totally shrewlike behavior in this post...I apologize profusely and with my whole heart...
Call it a momentary...okay, maybe not so momentary, lapse of reason, and another gap within my normal state of sanity.
If, that is, you could ever call me sane in the first place ;)
7 comments:
Shannon,
I hope I have never posted anything to offend you. You are sane and you are NOT a junkie. Pain meds are meant to be taken for pain. I know bone pain (from fractures)can be horrible. Please don't feel like you have to justify taking any medicines.
And Xanax is meant for anxiety. You wouldn't be normal if you weren't anxious with all that has been happening. I have a bottle of Xanax in my medicine cabinet and when I feel like I need one, I take it! Those around me should be happy that I do. :) My husband teases me about "mother's little helper" but it's just that - a tease.
And crying about cat vomit on my rug. Yup, I've done that, too!!! My cats seem to run to the carpet when they feel like they are going to vomit -- wouldn't want to do it on the tile or wood floors and make it easy to clean up!
I think you are very brave for being so honest with your feelings and posting them on a blog. Now, that I could never do.
Keeping you and your family in my thoughts and prayers.
Stay Strong
King (Kathie)
Stage IV 7/05 Liver mets
Gee Whiz Shannon!!
I can't believe anyone would have the NERVE to DARE critize you or others who have to fight this Godawful disease! This is your life, you have every right to live it pain-free (or as close to pain-free as possible). I often don't understand our society. Pain (emotional and physical) will wear us down when it is day in day out 24/7. Most people just don't get that.
You take what you need girl to keep YOU feeling well damnitall! Pleeease do NOT under-medicate. If someone feels the need to judge your pain management, tell them to try walking around for just 24 hrs with a nail stuck in their foot, then come talk to you!
Love to you and your family. Hang in there and remember to treat yourself kindly.
K
Dear Shannon,
WARNING LONG LONG LONG (read or not at your leisure)
Boy have you hit a nerve with me. Lest there be not understanding, I am five hundred percent behind you and you should NEVER NEVER NEVER feel apologetic for taking pain meds. First, I read what he said too and also did a double take. However, I think he was reacting to what could happen if a patient doesn't let their doctor know they need stronger meds. I don't think he was implying that you were that patient but I think he worded it badly.
The place where you hit a nerve is pain management specialists in general walk this fine line because they are the paranoid ones in my opinion. I suspect they are better with people like you who have active cancer and "pain doc" is definitely better on the MPIP with people who have active cancer and does have valuable advise. I think you should put out of your head the offensive comments because I don't think they were geared to you and focus on the valuable part of his advise, in terms of what meds work and when. That said, any doctor trying to advise people on a public BB without ever seeing them is basically a well educated layman. You have to work with a patient and see them which is why I always think the important thing is for people to let their doctors know about how much pain they are in so they can be prescribed what they need.
My experience is different because I don't have active cancer but I have dealt with pain specialists. I have found, in my case, that PCP and ONCS were more sympathetic. I was pretty shocked that the first thing my pain doc and a pain clinic seemed to say or be concerned with is making sure narcotics are used for the right reasons. I suspect with patients who have bone mets, in person, they drop that because Shannon they KNOW you are dealing with terrible pain that has to be managed. The problem with the MPIP pain doc is he does tend to get that speel in.
The reason you hit a nerve is the MPIP pain doc has said that he doesn't understand doctors who prescribe long term narcotics when there isn't a diagnosed organic or disease reason. The point is he has said in a case like mine he would never prescribe what is necessary for me to work and have an active life after ending up with chronic conditions after my groin LND. No he never said it to me but I've seen him cheerlead spouses who don't understand why their spouse needs pain meds as well as comments he's made to people with chronic pain after the LND that ask questions. I never ask him questions about my situation because that would cause a big brooohaha. Thank goodness, I have better pain management specialists for a case like mine. HOWEVER, in a case like yours he KNOWS you have to have adequate pain management but his other comments are more general and I think he has a position. I started to write this in a private email but decided that I would say it publicly since he makes his comments public.
I hope you get what you need for pain as I'm sure you will because your doctors know what's going on. Do not EVER feel apologetic for that.
I hope the snow passes you by but either way I hope you and your family have a great easter. As ever, Carver
Dear Shannon,
Never apologize for taking meds for your pain..no one but you knows what that pain is like. I have never had to deal with chronic pain altho there have been circumstances when I've had so much pain that I've thought about crawling out of this world just to escape that moment in pain. I'm a whimp I know and you are not. And, even if you were a whimp like me you deserve not to be in this kind of pain, not even for a moment. I can see how you might have been concerned about what the Pain Doc was saying but I really don't think he was directing it at you. I have felt from past posts that he was most helpful in getting pain under control. he has never met you so I would not be at all concerned about his thoughts on narcotics, etc..he did seem concerned enough to repost and ask how you were doing..maybe he's feeling a little guilt with how he responded cause I don't think I've ever seen him do that before. I've always heard that bone mets are the worst from any cancer as far as pain goes. I am glad you have doctors that are there for you and are taking your pain issue quite seriously as many doctors don't and that's what concerns me. I hope that all in all you are doing much better emotionally with the help of xanex and much less pain with the drugs you are getting and the radiation is zapping that beast to another world and beyond. Keep blogging as it help not you but so many others to deal honestly with their thoughts and issues in dealing with cancer. You are the best of the best. Your buddy, sue
Oh babe I wish I could come visit you. Or actually I wish YOU could come visit me as travel with my special "meatloaf" can be precarious. : )
Hopefully you won't need it as the Oxy seems to be helping you.
I hate drs who give patients grief over meds (I wasn't referring to pain doc, only to his correct assumption that often asshole docs can get it into their heads that a particualr patient may need x amt. when in fact they need y.).
I have seen my mom struggle for over a decade with intractable pain. Every Rx avail, many NOT available, contemplating bizzare experimental procedures...and then finally fiding a solution only to have it work for only a few months / yrs and then starting all over.
Melanoma, esp. mel. in the bones, is well known to be one of the most painful type of cancer / diseases known to man.
I don't care if you drag around a morphine self directed pump 24/7 with one hand while the other holds a tasty adult beverage and you've got a fatty hangin from your lips. - because guess what - You've Earned It! The level of pain you must be in breaks my heart.
I think people don't really understand how bad it can be. They'll say oh my pain is a 9 or a 10 - but they are still speaking, still standing. Ummm, no that's a 6 or 7 at worst. A 10 level pain will take your knees out from under you and leave you gasping breath, unable to contain the terrible screeches and cries that rush out of you before you cn clamp them down.
When you have THAT kind of pain you will and SHOULD take anything in any amount to get relief. And no it doesn't make you a pill hound or a junkie or weak willed. It makes you the owner of a human body - a failing, broken down, failing human body that needs INTERVENTION.
So fuck anyone who can't handle that or looks at you sideways - although most won't. Often that's just your perception & sensitivity, but get over it b/c thre is nothing wrong with doing whatever you have to do to be abel to get out of bed, off the floor, live your live while you can.
I'm sorry you're dealing with all this. I would take it away in a heartbeat. I hope the rad. works - it sounds like it's okay.
I will call you soon.
Love,
Amy
Hi Shannon,
My husband is on the same pain meds that you take. Hopefully they work as well for you. Never let anyone make you feel ashamed of needing pain meds. I'm not really sure why they give percocet to begin with. The doctors said the same thing to my husband re. the tylenol.
My husband, like you never wanted to be dependent on pain meds. He wouldn't take enough. His doctors could see the pain in his face. They took the time to explain that patients with adequate pain control do better with treatment. Pain is extremely taxing on the body, so management is important. Consider it part of the treatment for your cancer.
I agree with King on the Xanax issue. Of course your anxious. I don't know how you couldn't be.
All of the medical research to find these drug was not done so people wouldn't take them and continue to suffer. They were developed for a reason - to help people like you feel better. Take advantage of what is available in this day and age.
Best wishes,
Katrina
Bill G here. Gawd shannon, if anything My impression was how determined you were to resist taking the happy meds. Not sure I could say the same for myself in your place.
Your post, I believe, expressed the frustration and fear we have all experienced when the future looked dark.
Good on ya Shannon! (as the Aussies say)
Bill
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