Time for a little blog catch up. The pain meds titrating (or a word something like that) is going well. I was nervous about another step down, as I had a couple bad days with the last step. I did, however, step down right when I saw the doctor, and had Zometa treatment. In retrospect, that was probably a bad idea. But I waited until after my birthday this past week to step down another step, just in case. I think I did it Friday, and so far, so good. I'm getting very close to as low as I can go.

For anyone following my CEA, it was up again...over 180 now, jumping another 40 or so. It's been three months on the Tamoxifen, and those numbers say it isn't working. It is currently in Bonus Month time, a fourth month, and I have a little glimmer of hopefulness that something will improve. I quit taking all antidepressants about a month ago, and while the one I was on wasn't high on the Enzyme Interference list, I guess I can still hope for a difference. As I've said before, this is my last hormonal avenue. The next step is chemo, albeit an oral one first. It's still chemo. I see the doctor a week from tomorrow and if the tumor marker numbers show no improvement, he's going to want me to start the chemo. I think this fourth month on Tamoxifen is my hmmmm-ing and hawing month about it. We need to do something about those hot spots before a vertebrae crumbles or something equally painful. Or spread. I guess the rising numbers mean growth mode, and eventually a cell will hop from bone to organ. Since so very little research is done on metastasis, your guess on the mechanics of it all is as good as mine.

The thing bothering me the most right now is the numbness thing in my leg. My hips are out of whack I think, no surprise, and the Radiation Oncologist assumes there is an unhappy nerve. We can do an MRI to pinpoint, or I can keep doing PT exercises that I learned with the other hip in '08/'09, which seem to be helping a bit. I also have thigh pain along with the excruciatingly annoying and uncomfortable tingling, and increases neuropathy symptoms in my feet and lower legs. Oh, and aching legs, feels like bone pain, which may be weather / fibromyalgia related. Won't know until this monsoon season is over andthe dry heat dries back up. In short, my legs are driving me nuts.

Yes, I mentioned having a birthday. No, I didn't do anything fun, though I'm not sure I know what fun is anymore. That puts me just over three years since the stage IV diagnosis. I know I'm supposed to celebrate each year I'm still here, but for me, loneliness is a big factor, and that feeling of pointlessness. The only reason I feel to celebrate is that each year gets my son closer to that college degree that I really want him to finish while I'm still around. I don't trust that anyone else will see him through that if I'm gone.

Which brings us to that morose contemplating death kind of place that is getting more and more real. So let's skip it.

Signing off from my cell phone in bed...here's hoping my legs let me sleep, since I need to be up early tomorrow to drive the above-mentioned college student to school (no, he doesn't drive, and we haven't made a decision on the bus yet, since his classes are at the campus very near our house this semester.)

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.

Puked up my Perfect Prescription balance

Throwing up right after taking the bedtime meds is not the start of a restful night.

I hate throwing up. I usually don't ralph once in a year, so full-on power puking twice in a month is unheard of, unpleasant, and definately unwanted.

Last night I had a nauseous tummy that felt like it needed to be voided, and I even went to bed with a bucket by my side, just to be prepared. Tonight the icky tummy was back, and I thought how this could quickly get old, if endured on a nightly basis.

I had already taken prescriptions of which I keep careful track, and I doubt they'd had time to make their way to my bloodstream when up it came, dinner and all. So my pain killers and leg calmers and muscle relaxers and sleep inspirers were not where they should have been when bedtime called.

I tossed and fidgeted for over two hours. Careful fidgeting, as I am now in the vulnerable position of lying down, where a wrong or hasty move can cause pain, spasms or lock-up, and mental fidgeting, worrying and wondering if sleep will come.

And the depression starts to set in.

When the most all encompassing need, next to pain relief, is getting through that next bathroom trip without tears, swear words and further (what feels like) breaking bones and shredding muscle, the bigger picture is somewhat shrouded. When the most basic of human functions are once again becoming basic and easily achievable, the shroud lifts and bigger worries close in. I'm not completely helpless, but far from functional and able. I rely a lot on family member and friends. How long can this go on? My cash stash is dwindling fast, thanks to that funds-sucking foray into the nightmare they call a medical center, and I fear I may barely be able to squirrel away to cover another such future emergency, pay for the radiology treatments I hope are deemed potentially helpful to my pain situation, still replace the non-working toilet in my room and come up with a workable sleep surface of my own for the long haul.

Deeper still is the fear-based depression about getting through this Stage IV diagnoses to the point where I am Red-Rovered over to the other side, for painless rest and reprieve. I am okay with that part. I thought I was okay with the last days part, where they use all in their arsenal to make you rest pain free while waiting for you name to be called. What I'm not okay with are the possibly long drawn out median days, where the medium-to-big guns available at this stage often are nothing more than soft-pellet plastic pistols in their efficacy to me, leaving me to doubt that there really are big guns left in the Rx armory to get me comfortably through my end of life. But the biggest fear of all right now is that these median days of poorly addressed pain and discomfort last for years before I get to the end, the six months to go and NOW hospice can help you and hope to heaven they really do have a secret weapon, held back to fulfill that promise of dying in as little discomfort and pain as possible.

So what must I do to get through this NOW time, which could stretch on and on, so long as the cancer stays on my bones, where where it can continue to break, fracture, weaken, press on nerves, cause excruciating pain because it won't kill you from the bones but can wreak a lot of havoc?
I know, everyone's situation is different, everyone's motivation for enduring is diverse. This is where I am with my life and my need to proceed.

Since the vogue currently seems, for which I did not get the memo, to be to end a post with open-ended questions or seeds for discussion,
does anyone (of the three people still reading) have any tips regarding the regurgitation of one's Rx regime?
What plans do you have in place for the median days, while the end and hospice intervention could still be years off, when life is no where near functional or comfortable?