M-m-m-my Xeloda...

Who heard The Knack in their head when they read that? C'mon, raise your hands...

I'm back up from bed because my feet are being assaulted by thousands of tiny fire-hot pins...

Thousands of little blacksmiths 
are forging minuscule weapons 

at the foot of my bed 
and thrusting the tiny swords 

into my feet when they come
 out of the white hot coals.

No blissful falling asleep without knowing it...did I take my Ambien too early? Did I eat dinner too late? Is Xeloda going to aggravate RLS? Cuz my whole body feels edgy tonight. I hoped it would make me really sleepy and I would be sleeping more easily. It's only day .5 (since I started with an evening dose)...is this my regular crap, or my imagination, or is it all about to get a lot worse?

First Zometa Treatment

I have been guilty of shunning my blog in favor of the privacy of Inspire.com for all my woes. I know I should keep it up here, but I really don't feel I've found the right 'voice' for blogging. Oh well.

And now I don't feel like typing about my Zometa treatment (which netted me fever and chills), and will have to do so later.

I don't seem to be sleeping again. I don't know if it's because of the day I spent in bed ill after the Zometa changed my sleep schedule, disrupting my circadian rhythms, or what, but here I go again. Also for the first time in a long time, RLS has reared it's ugly head (PLM actually; a wholly-owned subsidiary of RLS). I end up getting up, doubling my magnesium, and hoping for the best. At this point (4:30am) it will be light soon, and a valium would be an ill-advised solution. I would sleep until 11:00 again, like I did today (yesterday - Saturday).

Thursday night I was awake until sun rise (about 5:00am), got up at 10:15ish to throw clothes on and take Brad to school. I bought a new bed with my tax return money; a memory foam mattress. Last night was my first night sleeping on it. Once I finally got to sleep, I slept well. It's just the falling asleep part that always alludes me. The alarm is set for 9:00am, so I can make it to church. I don't know how easy that is going to be, given the current hour.

I am left wondering if the insomnia and RLS/PLM are an added bonus to the Zometa side effects of aching and bone pain. Research time. The timing makes it suspect. Were the Pristiq causing the RLS, I would think that it would have done so at some point over the past three months, rather than conveniently waiting until three days after my Zometa treatment.

I do have things to write about. The Zometa experience, the Day of Art aftermath...I just have no cerebral power to do so.

Lunesta...one-hit-wonder

The lunesta only worked the one night, but at least I was awake for Thanksgiving day. Next night I was up until 3 or 4, night after that, I was up until 7:30am, and still awake at 9:00am when my son woke me for the cursed Femara. Needless to say, I slept until 5:00pm.

Then, I tried a brilliant, yet naughty, plan...(naughty since I did it without permission)...I took 2 alprazolam (xanax). Didn't do anything, so in an hour or so, I took 2 more. Of course by this time it was midnight, so I overslept the alarm I set to get up and make it to church! I even showered that night, so I could just get up and get dressed, since showering is SUCH an ordeal to me. I may be mixing my nights up here...I think it was Saturday night when the plan didn't work until late, and I overslept church. Anyhow, Sunday night I took 3 alprazolam, and before I even got to bed a bit later, I was feeling it...HOORAY! I went to sleep quickly (my biggest hurdle) and slept through the night, though, since I went to bed about midnight, had a bugger of a time getting up at 9:00 to make my Doctor appt w/ my PCP. I confessed my experiment w/ the alprazolam, and she didn't bat an eye...wrote me a scrip for 3mg/night. My Onc will probably have a fit; he thought 1mg was a lot...but I need to sleep so he'll have to a) get over it, or b) write me Valium.
I am also switching from Zoloft (and stopped the Celexa) to Pristiq. I know it's not a generic, but I want to try it. Dr. gave me a month worth of samples, and I'll see her again in 30 days to see how it worked, and get a prescription for probably a higher dose.

I can hardly wait until bedtime tonight to try it again. I hope it wasn't a fluke, like the one time with the Lunesta. I am going to go to bed earlier, so I wont sleep the day away. I'm so excited at the prospect of doing things in the daytime! I was beginning to feel like a vampire.

Well, an agoraphobic vampire, since I never went out at night either....

I'm just sayin'.

Plan D and Support Group Insights

Plan D...is not working either. Doctor gave me samples of 3mg Lunesta. I took it at 11:00pm. Went to bed, tossed and turned until 1:00am. Got up and watched comedian videos on youtube until 3:00am. Went back to bed, lay there awake, and decided that maybe I'd try again to just stay up until the following night. It's 5:00am. Problem is, as soon as the sun comes up, I get sleepy, and could sleep for 14 hours...I'm completely switched around. I don't like it, it makes me angry, and I'm completely non-productive, obviously, since I'm asleep all day!! I don't know what to do.

I went to the Cancer Support Group tonight. I felt like a big downer, and cried a lot, saying I didn't want to live 8 or 11 yrs, that I wanted 1 or 2...max...cry cry cry....I felt REALLY bad because there were 3 first timers, and one who had been coming as support to her sister in law, who just got diagnosis news yesterday. No meeting in December, and I really feel like I need to apologize!! I sure hope they come again.

But, as I got home, and things started sinking in, a point that was brought up started to make sense for me. That sometimes it takes a while for our mind to catch up to where our body is in the disease/treatment. I was SO calm when I first got the diagnosis of metastasis. It's almost like I already knew, or expected it. I was pretty calm about it throughout the hospital stay, apart from the discomforts of the hospital stay. Maybe my mind is just now starting to catch up. I was so depressed already from 9 months of chronic pain; then add the diagnosis to that...I am one depressed puppy!! I had really lost much of my will to live BEFORE I was told I had a cancer that could kill me/would kill me in (max) 15 yrs.

I also have a very small "plate". When people say "I have a lot on my plate", they usually have a dinner plate. Some people have a freakin' platter. I, on the other hand, have a tea-cup plate. Put more than 2 or 3 things on and it just starts spilling out all over and I cannot cope. So, tonight I am trying to think of what I would want to do once things get to a status quo...when all these kinks are ironed out (paperwork, insurance, disability...), what do I want to do? I feel pressure (put on myself) to work, yet I know that physically I am not ready, and emotionally, probably not either...I'm just feeling guilty and the sleepless nights make me feel restless.

I really want to go back to bed right now. 5:20am. I know I'll go to sleep in quick time now, but getting up at 9 or 10 is practically impossible! WAKING up is practically impossible, and when my son (bless his heart) brings me my Femara at 9:00am, I am often not even coherent. OK, I'll try it again...and try to get up at 9 or 10. And make myself stay up all day. Maybe that will help. This is a really boring time of day, and hard to stay up anyway, but, since this has become my pattern, I also really feel tired finally. How can 3mg of Lunesta not even phase me??? I've got to get turned back around.

Plan C

I found a bottle of Meperdine in a drawer in my bedroom. That's like striking gold in the "i-can't-sleep" world. It as expired. By a very long time. Ran it by some friends, and decided that it certainly couldn't have fermented or soured...the only bad thing surely would be loss of efficacy. So I took it. I'm still up pretty late at night, but sleeping the last few nights, and into most of the day. I'm waiting for that "I am falling asleep now" feeling to strike me tonight.

Oncologist appointment on this coming Tuesday. Nurse said I could try 3mg Lunesta samples. I have been taking the Femara in the AM instead of PM. Not sure if I can tell any difference yet.

I was lying in bed a few minutes ago, started crying. With all I have on my plate, and all the worries about our country, health care, the current administration, end of days...seriously, I don't have the fight left in me for that. I really hope that "preparing for the 2nd coming" doesn't mean staying here through the melee before it happens. I prayed that I could fulfill the measure of my creation and come to that rest of which Alma spoke.

I've been fighting all my life. Childhood physical, sexual and mental abuse (the effects of which are pretty deeply embedded); my eye injury and the hit my self esteem took from years of teasing, looking different; the fight to survive when the abuse all came to light and had to be dealt with, the fight to return to the gospel after turning my back for a few years, the fight of realizing I was in a bad marriage, the fight to raise my child alone and work full time, to try to be social, to hope against hope to meet someone to remarry; then turning my back on that idea and spending several years inactive and inappropriate again, and the fight to give that up. Six months after that decision came the original cancer diagnosis. Everyone knows what a fight that is, with chemo and hair loss and radiation and burns and surgeries, and decisions. And always the fights I cause myself because I seem to be unable to keep my mouth shut when I believe something is wrong. Now, metastatic cancer, and a world and country seemingly on the road to destruction...I have no fight left for this cancer or this world. I have no fight left to stand up to injustice, no fight left to be brave and endure treatments to extend a life I don't want anymore should this spread and come to that, which it eventually will. I'm tired and empty. I have no more strength. I don't want to get strong and endure more; I want to be finished.

The paperwork and money side of having cancer may kill me before the cancer though. I don't know how I am going to make it on disability. My depression and sleep issues are effecting my son. Hopefully he'll do better when school starts at the new semester, with a reason to be out of the house and keep busy. I can't stop crying now, and don't feel that drugged need to sleep yet. Maybe I had some duds in the bunch. Or maybe the Femara trumps everything, and I learn to live with this, or let them switch me to meds with worse side-effects, like swelling in the hands and feet, reddness, peeling...

Anyway...I'm out of fight. A lifetime of it has used it all up. In the hospital, my oncologist told me to reach deep and find the fight that I used to survive the first round. There's nothing left for which to reach down. I have faced this life alone for the most part, aside from the Lord, and I can't believe the things I volunteered for, challenges I accepted in this life. There has to be an end to which to endure.

I know that if things came to bad, my mother doesn't want me living with her. She didn't even want me there for 2 weeks so they'd let me leave the hospital and have supervision. So I can't lose my house, I can't walk away; I have to find a way to make do.

I don't want to live in the world of unavailable health care because of a govt run system. I don't want to live in the days of the Anti-Christ, or even the puppet and forerunner of the Anti-Christ. I don't have the drive or fight left for any kind of resistance movement, underground or otherwise. I'm old, beaten down, worn out and tired.

And, boy, if you ever feel you're just too darn optimistic, just call on me; I can bring a downer to any situation lately!

Plan B...

Taking the Zoloft and Celexa together at bedtime last night didn't work. I still ended up not sleeping and back up. My son was still up too, so we made a middle of the night run to get NyQuil (and donuts of course). The NyQuil did the trick (at 3:00am!) and I slept for 12 hours. I still feel sleepy, but I did yesterday too and made myself stay awake, hoping that would help at bedtime, which it didn't. Will try the NyQuil again tonight, earlier than 3:00am.

Remember the good ol' days when NyQuil was 25% alcohol? Now it's only 10%. I wonder what ratio one would use to add some vodka to the NyQuil dose....haha.

I would say "screw it" and go back to bed, but I have more paperwork with a time constraint that I need to get sorted through and mailed in to AHCSSS for payment. What the heck...maybe I'll call them tomorrow. I'm really sleepy right now. (5:20pm...been up for three whole hours...)

Had Oreos and milk for ... what meal is at 4:00pm? Hmmmm...a diet of sugar...maybe that's why I'm sleepy.

I find I'm having trouble keeping track of what day it is, and what the date is. And the day goes by so quickly when you sleep 'til 3:00pm...

If I'm just along for the ride...

...I'm ready to get off now thank you.

Still dealing with insomnia. Someone told me that Zoloft should be taken in the AM, though last time I was on it, it did make me too sleepy, so my doctor told me to take it in the PM. Up until 4am last night, took Xanax and NyQuil before heading for bed before sun-up, slept until 1pm. I decided to take the Zoloft in the morning (ha! 2pm), with my Celexa. By 3pm I was so tired I went and lay down. Slept HARD until almost 8pm. Unfortunately, I can't get back to sleep now, but tomorrow I'm going to take the Celexa and Zoloft at night, and try my methylphenedate in the morning, to hopefully feel more able. I haven't taken my Femara for about 4 days. Working on switching my sleep schedule back to night from day. I had a thought, maybe deep in my psyche somewhere, I fear sleeping at night due to the respiratory failure at night in the hospital. I don't know. I just hate this late night/early morning being awake crap.

Mailed my pkg to the SSDI people today. I have agonized over it being done correctly.

Counseling appointment tomorrow 12:15pm. Yes, I'll have to set an alarm for that one. Ugh.
Can hardly wait for the 4th Tuesday to be around the people in the Cancer Support Group.

Addendum:
Still not asleep. Lying there thinking and started crying. I hate that. Maybe I'll stay up all night and all day tomorrow. Maybe then I'll sleep Tuesday night.

I was thinking about my car wreck last November. The agent for the guy who hit me, or rather ran over my car, has been so frustrating and lacking in his contact with me. I got a letter a few days ago from a higher-up who has taken over the case, and from the letter it sounded like he didn't fill her in very well. I had chronic pain from the aggravated sciatic nerve for 8 months!! Chronic pain causes depression...made me cranky...I got in trouble at work, which pushed me over the edge. I called for help on a hotline we have, and started seeing a counselor, but that night was as close to suicidal as I've ever been. If this insurance company doesn't come through on this, I will get a lawyer and sue the jerk who ran over me.

When I got written up at work, I was so angry and shocked. Couldn't my manager have talked to me first, asked what was up? I had just been to the doctor for pain meds, so I could sleep though the pain. They didn't care. Between then and the review, I went back on antidepressants. They didn't care. They didn't care about the why, only that some of my behaviors had inconvenienced the manager. And every time I think about this, I start to cry. I think what maybe hurt the most, and continues to make me cry, is that my manager's boss was there too; someone I look up to and admire and have always considered a mentor. She said some very harsh words to me that were very hurtful. And I still feel hurt when I think about this whole stupid insurance and accident thing. The sciatic pain got better, sometime in July. No more shooting pains, or throbbing when I tried to sleep. Of course that was replaced by the pain of my cancer diagnosis, which we found when my Onc was concerned that I was still in so much pain.

I'm having lunch with two people from work on Saturday. The manager's manager (Escrow Manager) is one of them. I love her, I really do, and admire her way of communicating and handling conflict. But this time, it was just very hurtful. She wasn't a mediator. She was one of the executioners. I need to forgive and forget. And stop crying about it.

To go from 8 months of chronic sciatic pain, straight into a Stage IV cancer diagnosis to my bones, which is painful, though I'm doing OK with that right now, the depression has just gotten deeper and deeper. Insomnia, presumably from the cancer medication, is making it all the worse. This cancer will kill me. But I don't want it to kill me in 5 yrs, or 10 yrs, or 15 yrs...I want it to kill me soon. Six to twelve months would be good. Sleeping at night, instead of crying in bed, would be good. Not losing my house would be good. Not gaining a bunch of weight because all I want to eat is Oreos, Entenmann's donuts and non-diet orange soda would be good. I've given up diet soda because most places you can only get cola in diet, and I can't take the caffeine, not with this insomnia. And caffeine free diet Pepsi is so yuck...almost like bland. Caffeine free (non-diet) Pepsi is pretty good. I should probably give up soda all together. All this sugar is going to make me fat and mess with my fasting insulin levels, insulin resistance, which I had down to fine, no meds, before going in the hospital.

So now what...how many days in a row has it been? Do I stay up and try to find something stupid on the television, or go to bed and cry? I really want something to eat. Why is it that when things get tight, and grocery budgets dwindle, I feel like I am always hungry?? I lost weight the first month after radiation. I ate not much of anything. I'm sure I've gained it all back in about two weeks. Nachos would make me feel better, and maybe make me sleepy. Filiberto's is open 24 hrs, but I'm not dressed. I didn't get dressed all day today, didn't shower, didn't even put a headband or a housecoat on. I'll let the dog out and then decide.

Medicare? (and more whining)

I've been stressing out BAD...all I can see is that there is a 24 month waiting period for Medicare once you are on SSDI. I could be dead by then! COBRA payments will kill me if not the damn cancer. No, it will be the COBRA payments...people with more than just bone METS live on and on...good for them!

Another questions...seems like all the effort and aggressive treatment go into original breast cancer, but then when it comes to METS, even recurrences in the breast, it seems like the "wait and see" approach. I understand how liver and lungs are difficult to operate, but if I get a tumor in my breast, I'm gonna say TAKE IT OUT!!

I've decided that it's definitely the Femara that has to go. I missed a couple, and those are the nights I slept well. When I take it, I am up LATE! I wonder if changing the time I take it would help?

Feeling very overwhelmed, like I'll never get to that point when I can concentrate on my chronic debilitating illness, like the overwhelmedness will just keep popping up, and never end.

Need to Sleep!

I don't sleep at normal times. Last night I was up until 3:00am, then slept until past noon. Actually, I sleep about 4 hrs at a time...I wake up around 6 or 7 when the dog wants to go outside and the chickens want to be let out of their roosting pen, and I need to use the restroom. I can't make myself get up then though. Aside from the fact that I just went to sleep at 3:00am, I have no motivation for getting up. I'm still tired, and getting up is work...getting dressed, getting showered (though not in that order)...WORK!

I went to bed at 1:00am tonight...(yes, 45 minutes later, here I am)...and lay there crying, not tired, feeling depressed, feeling upset that I can't sleep, thinking too much, feeling guilty about not being able just to be back at work, worrying about the thick packet of paperwork I need to finish this weekend...I don't like crying. Not in bed alone. I hate it. I got up to whine about it here, and remembered I had not taken a Xanax at bedtime. So, I took one, and I am hoping it helps. It hasn't been making me sleepy lately, but it still helps a bit with crying and anxiety.

I went to the doctor today, only to find out when I signed in that my appointment is actually on Monday. I had checked my printout from last time for the time, and didn't even look at the date. Or it could be that dates and days mean very little to me and I have a hard time keeping track. So I gave the receptionist some info for billing AHCSSS and said, "I guess I"ll see you Monday then!" I think I have a counseling appt Monday also, around midday. Since I am so screwed up, luckily the two didn't end up over-lapping.

Reading about benzos today, I read that Xanax isn't for long term, and Valium shouldn't be used by people with sleep apnea. I am undiagnosed, but the sleep study showed several "incidences", just not enough for the insurance company to care; thus the dying while on Ambien in the hospital. That really pissed me off, because when I had Valium for the PET scan, it was so wonderful, even at a low dose, just for the procedure; I know a higher dose would help me sleep. I have got to do something about this sleeplessness. Apparently, insomnia is a reported side effect of the damn Femara. That's just what I need. I will make an appt with the family doctor on Monday, and talk to her again about different drugs.

Oh, and yes, I need to get Brad in next week, and get his prescriptions filled before the 31st, when he falls off my insurance. I have heard nothing from his father about the subject, other than that he called someone in HR and hadn't received a returned call yet. That was at the beginning of this week! I wonder what the retail on Brad's meds is?

I even had a list ready for the doctor, and printed out, one for me, one for him, for today! I think when I lay down to try to sleep, the disappointment hit me of being wrong about today being my appointment.

I really don't know how I am going to make it, fiscally, long term. The emotional and mental are difficult; fiscal seems insurmountable.

It's 2:00am now. I suppose I can try bed again.