Day 7

It's day 7 of the first dose reduction. Feeling like it will take forever to get out from under this, until the pain pill need is no longer causing crippling anxiety and depression. One day I am feeling positive about it, and the next, stress and worry piles on and the light at the end of the tunnel seems sooooo far away.

Day three...

I found out, reading things on the web, that another med I am on can have side effects and nasty withdrawal.  I've been on it for a while, since before the hospital, and I am thinking it may ne responsible for some of the leg muscle stuff. I looked up side effects Tuesday night, decided it wasn't working well enough to risk it, decided to quit it, then looked up withdrawal Wednesday night...yikes. It can be bad. I'm freaked out a little by the decision, and haven't decided what to do yet. I'm about a day and a half off it.

I did decide not to sit on my pain meds dose. The strengths that I have can be split to reduce the dose by 7 1/2 mg. I wanted to do 5mg, but decided to try the 7.5mg reduction and see if I make it to my doctor appointment and how I feel. If I am doing okay then, I can ask him to write for the next step down.

Today was day three. I had some anxiety today, and a few tears. I feel okay now, getting into bed. I hope it doesn't get worse than this.

One place online was a chat board with lots of anecdotal info on withdrawal from certain prescription drugs, abused or not. It certainly is a good source for possible withdrawal symptoms, but a lot of the posters seem to have been or be going through some serious withdrawal, some from high or long term prescribed dosage, some addiction. It didn't seem like they were seeking a high or recreational use, but prescribed doses got them to the point of dependence and withdrawal.  It kinda creeped me out. Doses were prescribed higher than mine and over long term, and I want to get out before I'm in that deep.

One of the drugs in my arsenal, one I took for a couple of weeks then dropped, is a dopamine agonist and the addict board mentioned this as a bad combination with opioid (sp) withdrawal. I actually should probably go there again and make some notes before I see my doctor.

Another step I'm trying to may, six months into a year of being eligible, is to use my Silver Sneakers membership at the gym nearby. Someone I know teaches the movement and motion aquatics class three days a week. I think that would be good for me. I finally worked myself up to going doen there and signing up on Wednesday.  The young man helping me behind the counter couldn't find my name in the system and sent me away with a phone number to call. I called when I got home, they found me right away. She put me on hold and called the gym, and this time the gym found me right away. The guy helping me had apparently typed in my birthday incorrectly (this was the only piece of info he had to type) and didn't have the skill, presence of mind or common courtesy to verify, with standing in front of him. I hope I don't get him when I go in tomorrow. I'm going to try tomorrow. I have to also call a number there my friend who teaches there gave me to get a cheap 3-month pass for my boy while school is out and he has no job. I can use his help getting there, and he can use the exercise. So hopefully I can get up and get myself psyched up to make that call and go back in again.

How do people cope with the twilight years, of death approaching? How does one get on with life when it's getting late in the game, especially when mobility is affected?

If I get off this pain med, my mobility may be further limited by increased pain. I think that is desirable over the anxiey and sobbing and worrying over things that could happen in a myriad of hypothetical situations and events. If I get through this, I will never want to cry again, and people will wonder why I never show emotion.

Fingers crossed for phone calls and Day 4.

Whiner alert...

As I mentioned briefly in my last post, I am convinced that a dependence on my pain meds is to blame for mood swings and depression.  I thought that staying on a regular dose to avoid the black moods was good enough. I'm not happy though, with this control that this has over me, and how precariously I sit at the edge of unreasonable depression.

I woke this morning and took my usual dose. Unlike weekdays, I could not go back to bed and sleep off that first dose, as church meets at 9:00am. So not only do I struggle to stay alert during the meetings because of the pain meds, but also because I am shorted 3-4 hours of sleep from my usual schedule. I came home so sleepy, I took a three-hour nap. I slept through the time for my midday dose. I was so sleepy feeling even when I awoke that I didn't want to take the full dose and need to sleep again. I took half. By late evening I was feeling the anxiety and unreasonable depression scratching at the door. I took my night dose about 3 hours ago, and I still feel on the verge.

I can't stand it. I have other reasons to be depressed, and even other medication that could be a culprit (see possible Tamoxifen side effects), but the connection to the pain meds seems undeniable to me when I can feel the panic mood coming on if a dose is late, or if I take less. I have to get off this pain med.

The idea is frightening.  The intensification of these moods, crying uncontrollably, feeling trapped, out of control and helpless, terrifies me, but being so controlled, and not infallibly, scares me as well.

I should have pushed the issue with the doctor, but when he didn't have a problem with the dose I was on, I let it drop. I had cut the dose from where I was post-hospital-stay, and didn't have noticeable problem with it. I thought he had been concerned about that prior dose for long term, and he is okay with this new dose. I do need it for pain. I don't want to go back to the pain levels I had right before and after that hospital stay, but this emotional / mental thing is unacceptable to me.

I know I can't reduce by half and be okay, so I want to try for 5mg at a time. I don't want to wait two more weeks until my appointment, which means I need to try to call the doctor and ask him to write a prescription for a reduced dose.

One of the recent unpleasant changes at my doctor's office is the phone menu. They no longer have the option to leave a message for your doctor or nurse. I don't know what they were thinking with that one. The only option is to hold for a really long time for the operator.  I didn't make it to the operator the last time I called because the hold was too long and I have up. When I asked someone in the front office about it at my last appointment, she gave me an extension number to try the next time. If I feel like I can't wait for my appointment, I will try that. It's not a solution for the staff being unreachable though, and if that extension doesn't work after working myself up to making the call, I'll be really upset. That's why I may try to wait, and talk to the doctor about it face to face.

Another thing really bothering me right now is this pain and weakness in my legs. I first noticed it during my radiation treatment, right after my hospital stay, but it has gotten worse and longer lasting. When I stand up to walk, there is a tingling and extreme discomfort in my thighs, like after a serious aerobics class or a run (thinking way back for that comparison!). It's gotten worse in the past couple of weeks, to the point where I can't stand much at all and the tingling trembling feeling doesn't entirely go away when I am lying down even. I think this could be a side effect as well, to either the pain meds or Tamoxifen, but it started before I started the Tamoxifen, so I think it's off the hook. Another reason to want to get off this pain medication.

I understand severe depression more now. I understand the warnings on medications about suicidal thoughts, and how something can artificially hijack how you feel, and why someone might take drastic measures to escape it. I just want it all to stop - the legs, the mood, the sleepiness. I know how chronic pain can wear on you and cause depression, but this is worse than what I have experienced along with chronic pain. I need to get out from under this.

No one to talk to...

Well, it feels that way a lot of the time. Especially at night. I put off blogging my feelings, even though this blog is about how it feels, fearing that my blog will devolve into a whining journal. If I look at the blog as just for me, a place to vent and dump emotions, then I guess I'm okay.

My tumor markers continue to rise, the CEA having crept toward 40 in the months we gave Faslodex to work , then 70 and now over 100. I've been on Tamoxifen now for less than two months; only a month at my last blood work, too soon to see results. Two months will probably be too soon as well, but I think I will not be able to avoid being hopeful.

I continue on Zometa, and send strong thoughts to my vertebrae, hoping against the odds that the degeneration of my spine can be halted.

I've come to the conclusion that the pain meds I take are responsible for painfully morose mood swings. I had tried cutting back and after weeks of uncontrollable sobbing, it came to me after much prayer that it could be a dependence issue. I went back to my previous dose and the crying jags subsided. Thank goodness, but I don't like the idea of it. I want to taper down more slowly, until I can get off completely, and use something else, which probably wont be as effective. Perhaps pain levels will not allow this. I don't know.

I've taken to using the walker instead of canes. I need the support and stability. Of course I hate my nursing home basic model walker, the kind you generally see with tennis balls at the ends of the legs. I refuse the tennis balls this time around. This kind of walker isn't really for indoor/outdoor, and rough surfaces can be difficult, not to mention hard on the caps on the legs. I've mentally accepted that the walker is probably my new norm, so I'm hoping soon to get one with all wheels, no legs, and hand-brakes. I'm leaning toward one of the three-wheeled models. Saving my pennies.
The car had problems this month, and long story short, ended up needing a new alternator. Ouch. But it could have been worse; at least the car is back in commission. Financial help came from an unexpected source and made it hurt less. I am so grateful for that assistance and thoughtfulness.

I'm typing this on my phone, which takes about four times as long, and I realized that I've only just made it through prefacing remarks and catch-up. I've not even begun rambling on about pain and death, and everything encompassing those topics in my life. Then there are the feelings of loneliness, helplessness, uselessness and ineffectiveness. I was going to try going to bed early tonight, but thumb-typing has drawn it out to the regular up-too-late bedtime that has my daytime schedule skewed.

I didn't solve anything or author any wisdom, but I feel oddly comforted by this sharing time with my smart phone.