Disneyland Pre-Christmas Trip!!!

Ok, today is actually January 7, 2010; started this a week or so ago and have just been too depressed to write, so since I'm making jewelry today, I think I'm in the mood to post.

I went to Disneyland/California Adventure (the week prior to the week of Christmas) with three of the funnest and best friends anyone could ask for. My BFF (although WE invented that in the 70's but called it "forever and ever best friends", back in the days of the Postal Service, LONG before texting) of 35 yrs treated me to this trip for Christmas. Disneyland at Christmas is MAGICAL, and the first thing we saw, when checking into the Paradise Pier Hotel, was a quartet of carolers in Dickens-age ensemble (said with a French accent), caroling in front of the HUGE Christmas tree in the lobby. They were so beautiful and sang so beautifully, it made me cry.



I made a bunch of pink ribbon bracelets to take, in hopes of noticing people who might be going through cancer, or over hearing a conversation, or something. I wore them around with me, and my friends wore one around too. I think only Raila kept hers, and I have since given the rest away, sorry girls. BUT, I gave one away to a young woman in a crocheted hat with a blue awareness ribbon on her bag that said "survivor". I asked her if she was a cancer survivor, and she was, but didn't go on to any details as we were, at the time, exiting the FABULOUS Aladdin on-stage production. I told her I was a survivor as well and asked if I could give her a bracelet. All very rushed as we were exiting.

On our very last night there, after the WONDERFUL Christmas parade down Main Street, we decided to RACE back over to California Adventure to try and ride the roller coaster one more time, at night. Well, when I say race, I mean RACE! Four people dragging one another along just wastes time, so these friends say, "Meet at the "R" in front, ready-set-go!", and everyone runs and zigs and zags...great fun actually, especially since I was on a handicap scooter thing!! Boy zigging and zagging can be tricky in that thing! Yet, I always got there last anyway....and only a few people yelled at me. (But I did NOT flip anyone off as I zoomed away, since, after all, we were in The Happiest Place on Earth.) SO, as I was zipping down Main Street, a woman stepped off a curb and I almost ran her over...apologies, apologies, and we go on our way, and then the back of my mind registered two things: she had very short hair, all over, like when it's just growing back, and she was wearing a surgical mask. No one else in the park seemed to be still that frightened of swine flu, so my brain, in that split second, knew she had to be a chemo patient. I pulled over to the curb and waited for her and her daughter to catch up to me. I reached out and touched her arm, and I don't remember what I said, something like asking if she was in chemo, told her a brief one sentence synopsis of my story and asked if she had breast cancer...she said no, Leukemia. I took off one of my bracelets and put it on her sweet wrist and said to remember all the people who were pulling for her and thinking of her. She teared up and hugged me tightly and thanked me dearly. In that hug we shared that common bond and I hope I gave her some strength. It was the best moment of the trip, and I will never forget her.

As far as the rest of the trip, they say laughter is the best medicine, and I have not laughed that much since I was a teenager and hung with Becky on a regular basis. I'm sure I talked Jeriann's leg off, though she said she liked it because it helped her fall asleep! HAHA!! We laughed, and joked, and took silly pictures. It was the greatest. More fun that I have had in years and years, and all because of the people I was with.



I had an oncologist appt shortly after we got home, a few days before Christmas. I made another bracelet, so I had three, and I asked the nurse at the end if I could go over to the chemo side to look for people who needed cheering up. There all together at the end of the room were three Breast Cancer Fighters, and I was able to give each of them a bracelet. One stood up and hugged me, the other two were already hooked up to stuff. I think the last lady I gave one to, who was reading a paper at the time, not noticing her surroundings, was very touched by it as I left. I know I felt good.

Doctor said I would be called to schedule another PET/CT scan in January....tick tick tick. I took him yummy hot chocolate from Starbucks, which I'm sure was cold by the time he was able to taste it, but he said he is used to warming things up. He wants me to think about Zometa (?), but I said I wanted to see another scan first, or do a bone density test first. I haven't done much research on it as I've been busy being quite depressed for the past few weeks.

I started on making bracelets again, and churning my head for how to get the Dirty Pink Underbelly thing going. Also decided to change "Survivor" (for those of you who haven't heard me gripe on about this before...since I have cancer again, I've been kicked out of that group, and seriously, you can't really know that you've "survived" it until the day you die of something other than cancer!) to more of an action word; "SURVIVING", which each of us touched by cancer, no matter our stage, is doing daily. It's my quest, my mission. If I can get through the depression of working out my finances, etc, then I shall stop being a depressed ninny and give it my all.

I do still want to die soon, don't get me wrong there. Just don't want it to go to my lungs!!! Poor Annette has suffered so much with that! Stay in my bones and then migrate over to my liver, spread like crazy and kill me fast. That's my plan. Now I just have to figure out what it is I have to finish up here. I think I cried about this the other night. Feeling better today, because it's been two days since I dealt with the mortgage counselors/making home affordable blah blah blah. There are three things I need to get done and fax over. Today being Thursday, I should probably get on that; but one is a "hardship letter"...geez, can I just send them the link to my blog? That one will be hard and make me cry and feel angry.

Back to my jewelry-making, not showered, not dressed, no bra, pretending to be a hippie, sans the ganja....

You Raise Me Up

(turn off my music player first)

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'.

Lunesta, Hats and Bracelets

First off, drug update, the Lunesta worked last night, Thanksgiving Eve. I went to bed about 11:00 and got up about 9:30. I think I stayed up too late tonight after taking the meds. I am not asleep and it is 4:30am. I did take a three hr nap at 11:30am-ish. Mostly I think I stayed up too late. I need to make that evening schedule and keep to a bedtime! It was wonderful to sleep all night.

I've been thinking about my bad attitude, about the damper I was on the Support Group. I watched the end of a movie tonight, which I'd seen before called "Facing the Giants". A quote from the movie: "We will praise God when we win, and we will praise God when we lose". I am doing my share of losing lately, and I have not been attending church as I should and praising in the best way I know how, singing. I need to get myself there (it's early, and the sleep thing has been a problem, plus the sitting very long thing) and SING...maybe they'll still let me in choir for Christmas. If I beg.

I've been thinking about the hats I crocheted a couple of year now ago, that I donated to the Oncology office for those undergoing chemo. I've also started thinking about the bracelets I have made again. For the past year, with all the pain, etc, I have lost interest. But I think I may feel like picking it up again. I just don't feel the urge to sell them, even with proceeds donated. I just like giving things away. I'll have to come to some sort of deal on that issue. I have two pink bracelets made. I want to give them to the two people from Group who were newly diagnosed, one newly diagnosed, one facing the question of chemo or not.

I'm going to Disney Land with BFF and her daughter and older sister in a few weeks. I want to wear a bunch of bracelets with pink ribbon charms and give them to anyone who looks like they may be chemo-ing for breast cancer. I'll have to wear my pin conspicuously, and I'll be pretty darn conspicuous in my wheel chair. It would work.

I think I will think on this more and hopefully get excited about hats and bracelets again. And get this sleep thing going so I can get to church and sing my praises, even though I may be losing.

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.

New Prescriptions;

But I think I have forgotten how to go to sleep, even when I feel tired! My family doctor added Celexa and Klonopin, kept the Zoloft, and asked if I wanted to keep Xanax just in case. I didn't think I would need it, but this afternoon I got anxiousy-panicky, so I took one. I feel tired, but tried going to bed and my head would not quiet down. Last night I was up until 4:00am because I had a bunch of caffeinated soda (stupid me), and slept VERY late. Maybe I have to ease my way back in to the two wonderful nights when I slept, the two days after I got the new meds. If this keeps up, I will have to try an alternative to Femara, which is the next option.

I still don't have all my paperwork done. Or bills to doctors taken care of. Or mortgage situation resolved. I had a thought, while praying before I didn't go to sleep, that I need to get all this done, and get all those irritating details "in order" so that the full measure of my creation can be fulfilled, if that's what the hold up is. I know; that sounds like I still want to die. But that's not what I mean. I just mean being ready. 5-15 yrs BEST scenario? I need to be ready.

I have accepted the "more years" part of this. Come to grips with the living on and on dealing with crap. I just have yet to embrace it. SO many people have health trials so much worse than mine, and face them far more cheerfully and helpfully...like my blog friends who do so much. Today I showered, even washed my hair...with shampoo, and put on clean undies...but no bra, and wore my house dress all day. I think that one of my challenges is the ADD tendencies, combined with the depression and anxiety. I'm kind of a mess most of the time.

I did dress up and attend a really fun family block party for Halloween. I'm so glad I made it. Friends are great!

A dear friend posted a quote on FB today; haven't googled to verify the attribution, but I really liked it. Made me think of being in the Cancer Support group, and finding others with METS.

"Friendship is born at that moment when one person says to another: "What! You too? I thought I was the only one." — C.S. Lewis

Procrastination...If I weren't good at, it wouldn't start with "PRO"...

I just haven't been able to get myself to sit down and do this. Maybe this weekend I'll be able to fill in the gaps.

- visit with oncologist good; got some more solid info. I officially have a "substantial amount" of cancer on my bones, but it hasn't spread in the past few months. He got a radiologist to do a comparison.

- attended the Cancer Survivor's Support Group at Banner, and they didn't throw me out for getting cancer again! Actually, there TWO other people there with METS! I felt welcome and at home. Considering joining the singing thing they have going twice a month until 12/1.

- paranoid side-bar: learned that ovaries sluff cells, so even if you have had them removed, you could still get ovarian cancer in cells left behind. Yeah, add that to the list to worry about.

- seeing the Primary Care Doc tomorrow to discuss better drugs. I have worn out my welcome, and therefore their effectiveness, with the ones I'm on.

- yep, still not sleeping. May have to change from Femara to one of the others, with their inherent side effects, if new meds don't help me sleep.


That's as much a nutshell as I've ever written, and really avoided the "feelings" part. Maybe I'm still processing. Maybe I'll try bed again!

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.

Can't sleep...again.

I was so excited last night when I went to bed at 10:00 and was able to sleep. Not the case tonight.

I'm also getting a bit worked up over the CT situation. The dear doctor is going to get an earful on Friday.

I'm still bummed that I won't be making my 'dead by Halloween' goal. Soooo much paperwork involved in being sick.

Whine whine whine...are we back to that???

Good News from the Good Doctor

Finally, yesterday afternoon came...scan results are in...and we are still bone-only. No organs involved, no lymph nodes. Cancer marker numbers are good.

I was not as happy as I should be. I know, I just don't want to deal with everything that goes along with a disabling, life-threatening disease. Mary helped me with some paperwork last night, and I feel a little better about that.

The doctor was happy, but I didn't get to answer all my questions as he had to go take a phone call from another doctor, for which I assume he was waiting. He was not able to tell me whether the bone-only cancer has spread, shrunk or stayed the same. I am hoping that they sent a picture to the radiologist so she can compare and tell me when I see her in about an hour.

To answer a question that I didn't adequately answer on the phone this morning; the pain for which I had the palliative radiation is greatly improved. The hip is good and walking is easier. Still using the walker, and new pains crop up all the time, but the hip was the worse and it is definitely improved.

During my original breast cancer, I commented once that I knew I was going to survive it, and get through it, as I was sure that life had more torture in store for me. Well, I was correct...and I'm not getting out of this one easily either. In the words of Billy Joel, only the good die young. I had a thought this morning that I am not good enough to get out of this life easily, regardless of how much I have, to this point, suffered and endured. I didn't get to grill the doctor yesterday about life expectancy, but I'm seeing him again in just two weeks. He wrote 5 yrs somewhere on my disability paperwork, and someone heard 20 months in the ICU in the hospital. He's been very evasive with me on that issue.

So how do I feel today, after that news yesterday? I am just not sure. I feel tired, facing who knows how long an ordeal with the bone, which is no cake walk, and only gets more painful. I feel frustrated, wondering what the hell I am going to do with myself to combat the boredom and lack of interest in everything. And of course, still overwhelmed with all that with which needs to be dealt. I feel a bit calmer, with the knowing, I suppose. I slept well last night.

So it looks like I'll be around for quite a while. A while anyway. I'm going to have to bug him more when I see him again, and insist that someone do a comparison, if the radiologist hasn't done it today.

17 hours...

Tomorrow afternoon seems a long way off. I'm worrying I won't get the information I need, that the office will be rushed, that for once, in all the time I've known him, the doctor won't be wonderful. My biggest worry is money, and insurance. I am so depressed I can barely function, and it still feels like so much needs to be done! I fear I will linger for years, and be sent back to work on Femara, and feel like crap all the time. I fear that will be my only option, faced with COBRA, since AHCSS is cutting me off. I will ask someone to call and get some information. I just can't do it. I can't cope, I can't function. I can't make calls, I can't fill out forms; I hear the Cymbalta commercials and say, yes, that's me!

No fever again this morning, and tonight, only low grade, but not until about 9:00pm.

Some of my friends can't stand when I talk about checking out. Especially when I express that I'm really OK with it. I just hope I can get to sleep tonight, so I can get to the doctor and not have it feel like an eternity. I need good, solid info. I need bone info. I need organ info. I need cancer marker info. I'm in limbo, not knowing any more than I do. I feel very lost right now, feel like I have no family to look after me, to help me with the hard things. And now that I'm crying, I have a headache.

I know that regardless of the outcome, I'm going to have to deal with my long term disability, and AHCSS and SS Disability. I'm sure I feel too good to be dead by the end of the month. And if things are bad, then I'll need that coverage even more. Nothing is going as I thought it would.

I'm on the verge of waxing morbid now, so I'd better stop. I'm sorry my last several posts have been nothing but whining. The month wait to the scan was hard, but this week wait for the results has been hell. I hope the doctor knows that.

Time is slowing ...

I have like 32 hrs left until my doctor's appointment on Monday. I don't know how I'll make it. I don't know if it's good or bad that they haven't called, and whether that would be my good, or their good. I tried to go to bed and just started thinking of all I have to do...AHCSSS says they will only cover me through October, because I will make too much money on LTD; obviously not taking into account that I will then be paying COBRA, which will probably amount to more than I will be making.

The simplest option I see is to die before Halloween. 2nd simplest is to miraculously feel great by the 20th, and go back to work, and work until I die.

I didn't have my every 12 hr fever this morning. 1st time in a week I think. I am not good at keeping track of time. I had one this evening, but I kicked it fairly quickly. I have a feeling that my kidneys are involved in this fever thing. I finished that round of antibiotics, but the fevers continued, until this morning. I try to drink more water, juice (apple juice is good for combating the undesirable side effect of Vicodin), but when I get the fever at night, and I'm all achy, part of what aches is in the kidney area. Where this whole thing started.

I'm so tired all the time. Getting dressed and leaving the house is a major even, taking hours to get showered, rest, put on underwear, rest, put on clothes, rest...you get the picture. I don't want to feel like this for months or years! I'm tired of crying. I'm tired of worrying. I'm tired of stressing. And tired of feeling like crap every night, obsessing over my thermometer. I know I should have called the doctor last week when the fevers continued. Or gone to see my PCP, but it was a hard week; fever and aches from 5 am until 10 or 11...then again at 5 or 6 pm until 12? 1?

My mom is in Idaho, my sister is there this week, and Becky, who is my rock, if out of town this week as well. (Damn October Break from schools!) Mary doesn't have to work Monday, since it's Columbus Day, so she's going to take me to the doctor. I barely feel capable of driving short distances lately; it's just so exhuasting.

I just don't want to go back in the hospital, not until it's time to die. The insurance has this dang $200+ per day deductible for the first 3 days...which is crap...and calling it a deductible exempts it from being over your out-of-pocket limit. I'd rather sleep in my own bed.

I hate this house. It's always messy, and smelly, and I can't do anything about it. I love my son and he does so much for me, getting me things, remembering my meds, toting and fetching all day long and in the middle of the night if I need him. But he's messy. And he likes to spend his time on the computer. I can't deal with all our animals anymore. I think the older 2 or 3 need to go to the farm. I just can't deal with anyone else's illness. Becky said she'd help me with the taking to the vet and crying stuff. Maybe I just need to start throwing stuff away. I liked the house when there wasn't anything in it when the tile was installed...haha.

One more day...one more night...then the results, and pretty soon I'm gonna need better meds.

{insert Jeopardy theme song here}

Fever is back, like clockwork; twice a day, early morning and late evening. I feel so overwhelmed when I feel this bad. And waiting for news on my PET Scan is making me crazy. I don't know if I can wait all weekend, but, if the doctor doesn't call me, then I guess he thinks I can.

I have an appointment with the radiation oncologist from my breast radiation. I think it's tomorrow. I dont' want to go. I meant to call today. I'd better call first thing in the morning. He has a good mammogram I just had, he doesn't need the hands-on approach, not with all I'm dealing with. I didn't see my surgeon this summer, or my gynecologist. I'll just ask the radiation doctor to forward my mammo results to them.

I see the piles of paperwork on my desk and I get so stressed. 3 hrs of "Ghost Whisperer" and 3 more of "Criminal Minds" helps me. So, I need to get away from this computer on this desk full of paperwork.

Radio-radio-radio--radioactive!

PET Scan went just fine, thanks to the Valium. And boy, that stuff kicks in FAST! I didn't even cry when the tech couldn't find my vein for the radioactive glucose (sounds so yummy). Two pokes wasn't too bad, but I'm changing my wording on how I describe the two choices.

They have a special bathroom for the radioactive people, with a big ol' radioactive materials sign on the door. Only the injected get to use it!

The time flew right by, and I didn't get a backache in the machine. I should have discovered Valium many scans ago!

When it was over, I asked her if I lit up like a Christmas tree...(my oncologist's phrase; he said I didn't "light up like a Christmas tree" on my bone scan). She very cleverly said she didn't know, she hadn't looked yet. Uh-huh. But she said I did very well to give them what they needed. They never tell you anything. I understand how they can't and all. She said a picture would go to my Dr. with the report. I said, good; I need to see a picture.

She was awfully damn nice to me, so either a) it was really bad, or b) she hadn't seen the bone scan and didn't know how to judge progression. Whatever. I'll give the Dr. a couple days, then call. I mean, hello; he didn't want me to go a whole weekend without talking to him about the bone scan! So if it's really bad news, he'll call me in. Monday (appt) feels a long way off.

I'm so tired today! I slept all afternoon, then had a late afternoon nap, and now, as soon as I'm finished with this, I'm going to bed for the night. My fever came back again, after the scan, and then broke while I was sleeping and I (Mary, is the past tense of sweat "sweat" or "sweated"?) perspired up a storm! I still don't feel very well though.

a new paranoia to add to the list...

I still don't feel very well, and physically just tired. I have this increasing pain, I may have mentioned it, in my side at about my waist or so. It's now moving around my stomach and the other side is starting to hurt. Hurts the most when I lie down or get up, so when I went to bed, I started crying because it hurt and made me think of my paranoia: that it's cancer all along those bones, spreading around my ribs and my pelvic bone. And there's the kicker paranoid part; I have an umbilical hernia, which has been re-herniated for several years, which has been more painful in the past several months. A hernia is a tear in the lining that holds your guts in. OK, I know the cancer spreads via blood, which would explain why it's on MY HEAD, but what if...WHAT IF...it's growing around my rib cage and will just help itself right inside the tear in my hernia lining. thing. YEAH. That would be bad, right? I mean, lots of stuff in there...

Every new pain that doesn't go away quickly, I am just SURE is cancer spreading.

So, I had to get up and write it down. To hopefully get it out of my head. MONDAY is the PET Scan. It feels like...D-Day? Is that a proper analogy? Doctor called me in ONE Valium for the procedure. It's my first time with Valium. I hope it doesn't let me down in the calmness, anti anxiety department, because, seriously, the only thing that would make me happier is if they offered me a doobie...(which spell check thinks should be "doorbell, which would NOT make me one iota as happy).

Tonight I just feel like things are speeding up...that I don't has as much time as I assumed I did to get things in order for my son. And crying in bed NEVER puts me to sleep.

If this is what dying feels like....

...then I hope they break out the better drugs! I've had (apparently) the flu. Fever the last two nights and aches that are so awful, so painful. It was awful. I never want to feel that again! Seriously, I hope they have some better drugs if the cancer gets more painful!

Once the fever was gone, I got hungry tonight and HAD to have biscuits and gravy...so Brad and I went out to where we went last Saturday with the relatives. Half-way through I had to run to the bathroom. Kind of expected that; I brought the rest home. There were these two old ladies there...one was probably the daughter, and the really old one, the Mom. MAN...I NEVER want to be that old! She had to try like 15 times to get up off her seat, and the daughter, who obviously was out of patience with her, didn't help her, just walked off and left her to do it on her own. They left when we left...in a pretty nice car, so hopefully she was on her way to take Mom back to The Home. What have we accomplished by extending life expectancy THAT long...? (says the granddaughter of a 98 yr old)

But...I am thinking I won't have to worry about that...even "best case scenario" only puts me at 60...and I think that's a pipe dream. Monday is the PET Scan. I don't know how long before I'll get any results; I see the doctor the following Monday.

Finally got notification regarding my AHCCSS....one letter saying I was approved effective Aug 2nd, and a second saying it was stopped as of November 1st. UGH...I am going to have someone else call on this for me Monday...this makes no sense and stresses me out.

Comments...

I hate that no one comments on my blog. Makes me wonder if it really gets read. I know some of you email me, or FB me, but, hey, if you read this blathering, leave me something so I know you were here! {thumbs-up} or something...lol.

Very stressed. Got a little done today. Trying to calm down. Going to get out of the house.

Paranoid Rambings

My head is always the parking lot for all sorts of paranoid ponderings, so I thought I'd write some of them down.

Please read today's posting from the blog I follow about Dancing with Cancer. She said some profound things, about living with disease, knowing it will kill you, but just not knowing when. She combined that thought with some spiritual aspects of Yom Kippur. (this is not part of the paranoid ramblings, although it does mention death, etc)

1. My first and biggest paranoid pondering is currently regarding the spinal injections that I had for my sciatic nerve issues in March. I had an MRI done in February, and nothing lit up and screamed CANCER, but...if there were just a few cells floating around, unfed, not doing anything...would injecting my back with a cortisone steroid send them into a growth frenzy? February to July is not that long a period of time for the growth that I ended up with.

2. I fear getting through the next couple of months. I fear losing my house. I fear living in my car.

3. I'm really afraid that I'll just live for years and be miserable, but unable to be normal. I fear the PET Scan showing a regression of growth, instead of an increase. I know, that's insane.

3a. I'm worried about how long I'll have to lie still on a hard surface for the PET Scan. I can't remember. And as much as I hate to ask for things, I may ask the doctor for a Valium for the event.

4. I'm paranoid that the imaging place person who was supposed to call me with prep instructions for my PET Scan in a few days somehow got ahold of my old, disconnected phone number. Now I have to call there tomorrow and find out.

5. I really love the UPS man. He's been such a good friend to me for years at work, and he called the other night, which meant the world to me. I'd love to see him before he retires (soon) and moves away to his farm in the Midwest. I'm afraid that no one would want to be close to someone who might die. I could so use one of his hugs though, from my birthday almost twin.

6. I feel really abandoned by the RS Pres'cy. No one has checked on me. No one told me I was being released from my chorister calling this Sunday. I heard it 2nd hand, since I wasn't there. Besides it being really hard to get up, since I don't sleep at night, and showering and dressing causes me to need a nap, I'm completely paranoid about all the flu germs and colds going around right now. Church is like a total germ-fest. Sometimes I start feeling sick just sitting in a crowded room there. And I know, through Facebook, that lots of families have illness right now!

7. My really old, 17 yr old cat, is looking rough. I thought she was just scruffy, but I touched her today, and she's all matted. She totally stopped grooming. So tomorrow, I have to try to cut her mats off and make sure she doesn't have WORMS underneath them. Yes, my aunt warned me to look for that if she had mats. I am struggling with my conscious right now regarding her lifespan and failing health.

8. Add the 10 yr old (?) dog to the above. Before I went in the hospital, his right eye clouded over like cataracts. In the three weeks I was there, his eye got worse. It's swollen, and red, and just gross. I'm pretty sure he has gone mostly blind. Sometimes he can't find doors, and won't go down a hall if the light isn't on. I may have to take them both to the vet. Do I need this stress? I know Becky will help me do this; she told me she would.

9. OK, some of these aren't paranoid, not as much as the first one. Mostly they are fears and stress. So this one is all the stuff I whine about all the time about phone calls, and applications, and disability, and insurance, etc, etc, ad naseum.

I listened to a song online today that I had only heard once before. Carrie Underwood's "Jesus Take the Wheel". I watched the video and listened. I was so touched, the chorus just spoke to me. I'm going to add it to my play list as another theme song. If I can remember how to work the play list.

Today I was going to get up and make my phone calls. I got up...for about an hour...on the computer...then went back to bed until lunchtime. I didn't sleep; I just lay there. Oh, and I did shower today; quite an accomplishment.

I talked to a dear friend from work today. She and her husband are going to do something for me that is helpful beyond belief. They have no idea. I am so thankful.

The Real Deal

I do not know what to do...the situation seems so hopeless, and I feel so helpless. There is a month's gap between Short Term disability, and Long Term disability; meaning I will have nothing coming in for October. There is so much to deal with with AHCCSS, DES, trying to get benefits; with the application process for disability, which I hear takes a LONG time, and is usually denied the first time around. Tonight I feel like I have no choice but to try to go back to work by October 20th. I just don't know if I can.

I know of two women who have died from metastatic breast cancer. One was a couple years ago, a friend of my sister's, and recently the wife of my aunt's boss. Both of them went quite quickly, once it hit the organs. Both of them had husbands and the luxury of just being sick. Why couldn't I be the one to go quickly? Why couldn't they linger for years? It seems so unfair, and so unrealistic for me to try to deal with all this. Do I walk away from the house? Try to sell it? Live in the car? 9 days to the scan, then 7 more to the doctor, and I have to admit that I hope the results are very very bad.

Has my life not been crap enough? Why do I have to struggle through the financial side of this alone? It would seriously be less expensive to just die. The bills are stacking up, pouring in...and I don't even understand half of the information I've received regarding benefits and disability from work.

Here I am crying at bedtime, and I'm sure I won't be able to sleep. Tomorrow I will call the EAP support line, and try to get in to see a counselor, although, frankly, that just gives me a place to cry. I guess they have financial counselors too though. And I need Brad to see someone too.

I thanked and hugged the nurse who found me, unconscious, heart not beating, in the hospital. I'm just not feeling very thankful for that right now. Yeah, there would have been things to sort out, and Brad would have been devastated, not being prepared, and would have to go live with Dad and Jolyn...he would not have been happy. He's not going to be any happier when it happens unless I can get through this few months of financial mire, get him employed, and get everything "in order". I just feel like I cannot cope with all of this. Hence my hope that I truly am dying. I know that is a bad thing to say, and just points to depression, but seriously, it's reality-based depression! There's too much to do, and I am not feeling well tonight. My hands hurt, my muscles have that all-over ache, like when you have a flu, and I have a low-grade fever. Sometimes I feel sick like this and sometimes I feel like I really should try to go back to work. But my bones hurt at my tailbone and in the pelvic area; I couldn't sit for more than an hour or so at a time without lying down. If I can even remember how to do everything, and then there's the long drive that's already nearly an hour seated. Plus, I'd have to take more meds to cope with all of that inherent stress. Taking the ADD meds that keep me from screaming at people, also seem to not act well with my Xanax and Zoloft, and I don't sleep well when I take it. I don't know if I can wait 2 more weeks to see the doctor. I need to call the person at his office who talked to the disability company.

I just don't know. Really the only help with advice my sisters give is to get rid of all my pets. That's like a drop of water in the ocean. I called the appt guy to try to get in to see the Bishop, but he hasn't returned my call since yesterday afternoon. My friend who will pick up Brad for church tomorrow is going to mention it to the Bishop. I'm sinking here. I just don't know what to do.

Yea!

My blog of incessant whining is now on the blog list of cancer blogs at beingcancer.net. (see my blog list; inspirational man!)

Now someone might actually read it...besides the people I force to, so maybe I'd better strive to come up with something more positive and/or insightful.

Margo from work brought some flowers to me today which had been sent to me at work. They were from the mortgage people that I worked with on refinances at the Wells Fargo Home Mortgage Branch! So thoughtful! I miss working with them...they are the best! Thank you Brandon, Kari, Chris and Brian!

Had brunch this morning with a whole ton of relatives. My cousin Russell was down from Utah (yes, he is a Utard) and wanted to see me...everyone thought I was dying a month and half ago. It was great fun! Ok, I'll add the picture.

35 minutes until the women's broadcast starts; don't think I'm going to make it showered and dressed nicely in time to get to the stake center. Was going to watch at my sister's house but I didn't tell her in time so she made other plans. Oops.

More pain, but still mild-ish?

Stopped taking the pain meds (Vicodin) Saturday. I couldn't stand the constipation. I don't know how Dr. Gregory House can stand that. I probably talked about this before, since I talk about my butt all-the-time! (Right Karen?) Yesterday and today I have slept most of the day. Today I am feeling a little more pain. Question is, with the (slight) change in the weather, is it fibromyalgia pain? Or is it Femara pain, rearing that ugly head again, or is it just plain The Cancer? Could be a combination of all of it, especially since I feel it in my lower back quite a bit. I'm doing OK with just ibuprofen and frequent rests for now.

I realized today that I rarely have anything positive to say. I can think of ONE blog that was positive. And the effects of that are wearing off. So, sorry Followers; I'm having a hard time coming up with positive, or even funny at times! I know that the Funny is what you're all after.

I'll try to work up some new material.

Really?

I am doing very well physically, considering. The radiation really helped the hip pain. The problem is I am not doing well emotionally or mentally. Short term disability running out. Need to apply for Long Term, which isn't guaranteed, even though I've been on short term and paying my premiums all these years. Need to apply for Social Security Disability which is apparently a huge ordeal. And I can't get the forms to print on my computer.

Just found out that I need to send a check in to my company for about $300 for my insurance premiums since August. But it sounds like the Long term disability application process has been started. My luck they'll say, nope, sorry; she could be sitting and should be working.

Spent the afternoon yesterday with someone with even more reason to be depressed...she said it would be easier to be dying of cancer. I'd have to agree, but I have a feeling that I'm not going to get out of things that easily. 10 more days to the PET Scan. Maybe I should find some more Ambien? (Go ahead, yell at me.) How do I hope for things to look GOOD on the scan, when I feel so unable to cope? I just don't know.

My ex is going to have to step up and help OUR son with college applications and job applications. HELP, not just yell and give guilt. I can't deal with my stuff and his stuff.

I haven't been sleeping at night again. I'm going to have to stick with xanax in the mornings and not take the Adderall. That seems to be what makes me not sleep; taking Adderall in the morning, even though it's a small dose. So today, after not sleeping, I said screw it, took the xanax, and slept all day.

I started coloring. Yeah, like coloring books and crayons...but I got some colored pencils too, and a book of design patterns that you color in. Did that all afternoon with Becky and her daughter the other day. That was a good day.

I haven't had my blood drawn yet. Maybe tomorrow if I sleep tonight.
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Tried to get ready for bed but thinking about the insurance premiums has driven me to the computer. Apparently is was all in a letter that I didn't read closely enough because I thought it was a duplicate. So, we pay it and then have no money left. No choice there.

But my big thing tonight, and seriously I really can't help thinking this...WHY did someone have to find me the night of the "incident"? I mean seriously, I really hope the PET Scan shows I'm dying fast. I've had enough. More than enough.

Warning: Gross references contained:

Sleeping again, and that is a plus. Back on all the meds, and the upped dose of one from the Dr is beginning to kick in. But, I'm on a bad schedule since I don't have to get up for radiation...sleeping LATE, often taking a long nap, then not being ready for bed at a decent hour.

The hemorrhoids / post irradiation IBS (I made that up) / finicky stomach is still driving me crazy. I have brief partial days where I think I may survive it, then...wooops! And speaking of those suppositories, I am sick of sticking my finger in my butt. Yep, I said it. Karen, take note. Oh, and I think I forgot to mention that on Friday, I was out driving Brad somewhere, and got that urge...clinched until I got home, but was too slow walking, and of course, it's hard to clinch and walk...long story short...I pooped my pants. Exhausting ordeal, the whole thing. I called my sister and cried for quite a while, then took a long nap. Woke up at 9;00pm. It was awful. And while we're on the subject...I love farts. I very rarely trust them these days, but when it's truly just a pressure-relieving fart, it's so great.

Trying to chill, as I promised the doctor. I'm doing a pretty good job, as far as the diagnosis / prognosis goes. I'm so stressed about bills and paperwork and applications, that I teeter on the brink of shutting down. Becky is going to come tomorrow and take me to get my blood drawn, which I have procrastinated for a week, and help with some phone calls. I love her.

One of the stressful phone calls, the one from the insurance company, was actually from this Wellpoint program where they give you a nurse/case worker type thing. (Well, until I lose my insurance in a month.) I spent an hour and a half on the phone with her the other day. The one that was from the disability company never returned my message!

The nurse person from Wellpoint suggested coloring for stress relief and occupying one's mind. Sounds great, and I am planning a trip to Michael's tomorrow for coloring books and crayons.

OK, one little worry, which I have relegated to "ask Dr. P" when I see him...in February, when I had the MRI on my lumbar before the pain center did the epidural injections, they didn't mention anything hinky. I would REALLY like them to take a 2nd look at the films, and look for cancer-type hinkiness...because what I'm wondering is, if there were even tiny cancer cells at that time, whether they end up seeing them or not, did injecting my back with steroids send them into a growth frenzy???

I went out last night. Barely made it; geez, hair, make-up...to karaoke at somewhere close to here that was (erroneously) recommended. Jamie and Ray met me there, then Joy, David and Josh came. It was so fun being with everyone, and I did sing once. The rest of the music chosen by the senior citizens in attendance just about put us to sleep, but I do have to say, they have a kick-ass sound system, and he adjusted it for my voice, and made me sound great. Except for the part of that song I always screw up and miss the key...

Small Phone-Phobia

I slept much better last night. I had the up at 5:00am for hourly trips to the bathroom, but I got up at about 9:30am. I listened to a voicemail, however, from my insurance company, which stressed me out. Big time. I couldn't return the call just then. So I went back to bed.

I woke up at 3:00pm. I had another voicemail, this time from the disability company. MORE STRESS!! Gosh it was now past close of business Eastern Time, so I have to call them tomorrow too. I hate this stress and anxiety! I don't deal well. I have so much to do tomorrow...need to return calls, get blood drawn and I have a mammogram appointment. I have to renew my insurance over the phone before I leave.

OH, and I keep almost blocking this out! The psychologist I saw about 8 yrs ago, whom I wanted to see so badly now, returned my call (another voicemail) and is so overbooked he doesn't anticipate adding any appointments until Spring.

I'm not sure which thing is stressing me the most.

I need some hand-holding. I need prescriptions and bed.

METS article I liked:

May 14, 2001

Metastatic Breast Cancer as Life Experience
Diane W. Scott, RN, PhD, FAAN

Recurrence. Metastasis. Relapse. Words to describe what may happen to every one diagnosed with breast cancer, and does to between 10 and 30 percent. For 8 to 24 percent of all, reoccurrence of breast cancer in some location will appear within two years of diagnosis. In the remaining 2 to 6 percent, it will occur sometime after the two-year point. The more aggressive the cell, the larger the tumor, the presence of cancer-positive axillary nodes at the time of surgery, a diagnosis of inflammatory breast cancer or Her 2-neu positivity are biologic indicators of higher risk for reoccurrence.

Reoccurrence means that breast cancer cells are found in some location in the body generally after treatment for the initial diagnosis has concluded and when no evidence of disease has been the case for a period of time. On biopsy, these cells are found to be the same cancer cells that were found on original diagnosis. If they are not, they may be considered a different primary cancer rather than a spread of the original cancer and as such, a new disease.

Metastasis may be local, regional or distant. Local mets are located in the originally-diagnosed breast or the contralateral or opposite breast. Local mets may be in the same or different location than was the original site. Regional mets include the lymph nodes around the breasts (Mammary), lungs (Hilar), and those nodes running in a chain from the armpit, up along the clavicle or collar bone and on up into the neck. Distant mets involve organs that are favorable to breast cancer cell colonization: Bone, Liver, Lung and less often Brain. Distant metastases can compromise survival because they ultimately interfere with the function of vital organs. Overall, if breast cancer is detected early and is treated properly, the majority diagnosed will live out a normal life span. Similarly, if metastasis is discovered early, there is a very good chance that appropriate treatment will place the disease in remission again.

For those who have metastatic disease, life becomes very complex. No matter how many supportive people are around, metastatic disease is a lonely experience. Emotions felt in the first newly-diagnosed, active treatment phase of recovery, are felt again but more intensely. Fear, Anxiety, Anger, Depression. Remaining hopeful, fighting feelings of helplessness, becomes a full- time job, no matter how many diversions life offers

The reality is that breast cancer is a chronic disease that may go in and out of remission over time. The aim of medicine at present is not cure, but permanent and complete remission, or the disappearance of any diagnostic sign of disease. Following medical treatment, two powerful natural forces within the body assist to maintain remission. The Immune System and the capacity for slow Repair of DNA and mutated genes. In the first six months following the end of cancer treatment, a subdivision of T-lymphocytes (antibodies) called Natural Killer Cells will proliferate. These immune cell are designed to patrol the blood and lymph systems, on the lookout for cancer cells. Their job is to track, find, lock onto and kill cancer cells. This process can be augmented by stress management aimed at reducing cortisol (the body's adrenaline) levels. Ultimately, the number and quality of NK cells produced is enhanced as stress hormones and neurotransmitters are decreased.

There is some evidence that DNA has the capacity to repair itself. Since cancer is generated by mutated genes that cause faulty protein production and thus abnormal or malignant tumors to develop, this process is an important aspect of the disease. DNA repair takes much longer than antibody mobilization, some scientists think that the repair process can be enhanced by acquiring harmony within. The membrane on the outside of the cell contains as many as 1000 receptors which communicate information from the atmosphere outside the cell to the inside of the cell. When the signals communicated are harmonious, repair and normal restoration may take place in DNA, located inside the cell. There are many complementary therapies available that may help to establish harmony. Scientific research testing several of these therapies is underway, but will take a long time. However, any effort that orders and organizes the environment, increases creative endeavor and establishes beauty in one's life will help to increase the harmony within. A cancer diagnosis gives permission to take life in hand and improve its quality.

When you actively take charge of your life, its quality improves, and so may your chances for survival. The diagnosis of metastatic disease is a signal that you must go to work again and begin taking steps to increase your feelings of control and well-being, and to enhance your chances for survival.


• First, find out the exact nature of the metastasis. Request a talking appointment with your medical oncologist and either tape the session or ask someone close to you (spouse, good friend, adult child, other family member, etc.) to accompany you to the appointment and take notes. Go over scans, pathology reports and blood assays with the physician so that you get a good sense of what is happening in your body, Discuss treatment options and the oncologist's recommended treatment plan. If you are still in doubt, make an appointment for a second opinion with another cancer specialist outside of your own oncologist's health care system.

• Second, your life and your health now become your first priority. You will need to give full attention to this 'new job' ahead. Most treatment programs are rigorous and may require time off from work or a protracted period away from the job. See your employer and human resources person to find out about your options.

• Third, gather a support system around you. Quality is more important than quantity. Be reasonable about your expectations for support. Not every person can provide all three of the essentials of support. Assistance, Affection and Affirmation. Some friends can lend a helping hand but cannot provide the couch or the ear that are often needed. Others can be there as good listeners, helping you to feel as if you can get through the crisis. Support groups are a good way to bolster your support system. The group should never tire of the issues that breast cancer brings to the fore. A good group is a reliable place to get information and share resources, a place where every one can safely express feelings and emotions and can be an outlet for the pain and anguish that may otherwise be borne alone.

• Fourth, actively participate in your treatment. Take steps to make it as comfortable as possible. Establish a good relationship with the person who will administer your treatment. Work with that individual to manage nausea, be assured that treatment is given correctly and safely, be kept up-to-date on your progress and response to treatment and be allowed privacy and comfort during the often prolonged time of treatment administration. While you are receiving treatment, take time to do relaxation exercises and visualization. The easiest way to invoke harmony within; during this time is to listen to a relaxation or imagery tape recording. Provide yourself with a free time for between 48 and 72 hours following treatment, when you rest, continue taking anti-nausea medication, and pamper yourself. One of the most prevalent side effects of treatment is fatigue. During this time, your body will do the natural thing to help you to survive. It will reroute your energy inward to cooperate with the many changes occurring with the treatment. You will experience this as fatigue. Allow yourself to lean into the feeling through rest, sleep, relaxation and imagery, yoga, any techniques that allow you and your body to come first. Having a massage following treatment is another good way to establish the flow and the harmony within Current research findings point to exercise, as tolerated between cycles of treatment, as an effective way to reduce nausea, fatigue and other side effects.

• Fifth, take on the crisis of metastasis in manageable doses. A diagnosis of metastases is an overwhelming occurrence. No matter how well-informed and prepared you are for its possibility, reoccurrence is a shock. Be gentle with yourself. Try to off-set the crisis. Take it on in manageable doses. Take one thing at a time. Later on, you will be able to do more things, but initially, take what you have to do in a step-by-step fashion. This might be a good time to find a therapist or counselor who specializes in oncology or working with cancer patients, someone who understands the disease, its treatment and the emotional cost of the total experience can be a powerful ally. A short course of antidepressant or anti-anxiety medication may not only reduce the emotional pain, but may allow for an improved and more focused response to cancer treatment. Although this type of therapy may not be right at the moment, remember that it is available if needed later on.

  Stress management and creating the harmony within are essential to the recovery process. Counseling may help you to develop new skills in relating to family, friends and co-workers, resolving old problems and issues that resurface, learning to set healthy boundaries, coming in touch with your spirit and your spirituality, and learning new ways of expression through journal-writing, meditation and other means of probing who you really are and what you are all about.

Strangely, the metastatic cancer experience provides advantages that life may not have offered otherwise. It bestows a wisdom that most people would not have gained until old age. The central issues of having metastatic disease are deep ones. Loneliness and isolation, exhaustion, living with uncertainty and, most important, finding new meaning and purpose in life. Take full advantage of this time, learn to submit and lean into things like fatigue, allow yourself to be number one, come toe-to-toe with your anger and fear, learn how to re-channel emotional energy to your benefit.

There is a significant possibility that your disease will then go into a partial or complete remission, or might stabilize with treatment. By working towards that end, you will be stronger and more skillful in any other challenge that might lie ahead. Streamline your life and make it organized and efficient, including getting your affairs in order. Everyone should.

Honor yourself and your life. Begin today.

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Insert 1 suppository per rectum twice a day...

Seriously. Dole them out to everyone in the family? Or do some folks have more than one? I didn't make it up...it was on the label.


Doctor day today! From the primary care, stronger dose of Zoloft and hooray for the suppositories...I don't care if it's gross to talk about; they may save my life. Just swallowed my first shot at the new Zoloft dose. Let's just see if I feel sleepy soon...


Also saw the oncologist...the lovely Dr. P. He got a little freaked about the 1mg of Xanax. Hello sweetie pie...I told you that last time I saw you. He said I had Xanax (with the morphine and Ambien) the night of my "incident"...yeah, probably .25mg. The proverbial pat on the head. I am really convinced it was the Ambien. I've been taking a mg of Xanax for like a year or more. I asked the Primary Doctor, and she didn't bat an eye at it. I asked her if it was OK, or too much. I think she is of the opinion, if it helps, go for it, and obviously didn't consider it dangerous.


I asked him more of my silly paranoid questions. He said stay off the Internet and away from google late at night, to stop worrying about my prognosis, etc, until after the PET scan, which (YEA!) they are going to schedule for the first week in October. I told him about the crying in bed and he made that cute sad face that I just love.


He also assured me that Femara is the FIRST LINE of defense, the FIRST THING to do in cases like mine. I kept reading mention of chemo (which, hello, I'm NOT asking for) and wondering if I was just beyond hope and that's why we were doing what we were doing. He assured me no.


To break it down:

• Femara is the FIRST LINE OF DEFENSE
• Chill out until we see what the scan says
• Stay off the Internet late at night (he said, "I know how you get")

He is the best. I just love him. Oh, note to self to get that blood drawn tomorrow that I didn't get drawn for him today. I hope Lola is working, otherwise I will cry and carry on and maybe hurt someone at the lab. Good excuse to go to Starbucks though.


I saw one of my nurses from chemo in the hall. Even the nurses had heard about my "incident" and said I had worried them.


Between the "straining" in the bathroom, which I try not to do, and the crying in bed, the muscles in my sides, right below my ribs are sore. Oh I hope I sleep well tonight. Brad turned my mattress for the overly-used side is not the side I'm sleeping on. Had a bit of a nap earlier. A couple of hours. Oh good; I just yawned!


Even though I cried at both doctors, I do feel better tonight after seeing them and getting more stuff...hopefully better armed to handle this crisis.


I will post an article that I printed for Dr. P. It was one of the few with any info in it, and encouragement. Here is the part I really liked:

"For those who have metastatic disease, life becomes very complex. No matter how many supportive people are around, metastatic disease is a lonely experience. Emotions felt in the first newly-diagnosed, active treatment phase of recovery, are felt again but more intensely. Fear, Anxiety, Anger, Depression. Remaining hopeful, fighting feelings of helplessness, becomes a full- time job, no matter how many diversions life offers."

It goes on with some encouragement but staying healthy, immune system, etc. I'll post the whole thing.


Oh, I also called for an appt with Dr. Lovejoy. Haven't heard back though. If he doesn't call tomorrow, I'll call and make sure I gave the secretary my cell # correctly.

Never want to use the bathroom again...

That's right; you heard me! I've been in the bathroom about hourly since about 5:00am...the constipation seems to have broken up a bit, but the explosive remains are killing me, and make my ever-painful hemorrhoids bleed! Not fun, and exhausting, and painful! I kept lying back down after each episode, and suddenly it was 11:45.

I'm seriously considering going back to an all liquid diet (TRUE liquids with NO pureed soup!!), yet I'm starving, so here I sit eating toast. Whole grain. I'm sure that digests well.

I've procrastinated calling my primary care doctor for two weeks, ran out of meds, couldn't sleep at night and have really been miserable for about a week or so. Anxiety has been high. I stay up all night googling metastatic breast cancer and waxing maudlin on Facebook.

I got some meds and finally slept last night. Thank goodness.

Yesterday, before I got the meds, I was lying on my bed resting, and crying, and thinking (which I do too much of) about my respiratory incident in the hospital, when my heart stopped, i.e. I was dead. I thought, why couldn't I have just stayed dead??? And why don't I have some wonderful near/actual death experience to draw on? I remember nothing.

Then, the more clever part of me thought...maybe I DID have a wonderful experience? Maybe I chose to return and chose not to remember (cuz, by comparison it would be no contest, right?)...ergo (love that word) maybe I still have something to do? Maybe getting my son graduated wasn't enough; maybe I need to get him better prepared?

I felt calmer after that, stopped crying and almost fell asleep.

Feel a lot better with some xanax in my system now too, even though my b-u-t-t is killing me, and thinking about a DNR order for hemorrhoid pain.

Shelli's wings - A little poem for Shelli by: Lil'Baloo

Are these wings? When is it time to fly
It seems as though time just went on by
Friends all around,lifetime full of love
Some here on earth, most from God above
Focus on the journey,look back or ahead
Cant change the past,is what has been said
Look ahead can be scary,to say the very least
In our fathers loving arms we can find peace
Maybe right now,today is where you should be
Sharing with your loved ones your personality
What is ahead? it's not just your choice to make
Whats happening now is where you pound your stake
Enjoy life, laugh real hard, forget all your strife
Do something kind today, to change a persons life
Most of all remember how great you are today
In this game of life,you chose to come and play
And when and if God's choice, it comes to you dying
Just remember your not falling, you are really flying
Yes, Shelli..you have always had wings!

- Lou Mills

What to do with your time after you ring the effing bell:

Lovely title, suggested by a dear and funny friend.

So they have this bell that you get to ring on your last radiation treatment day. Yesterday I told Becky, who had driven me, that I was not ringing the damn bell the next day, that I'd get some old fart to take my turn. Today, I asked my guys if I HAD to ring the bell, and shared that yesterday I said they couldn't MAKE me ring the damn bell...John lovingly explained to me that the bell wasn't just for me...it was for everyone in the lobby, to give them hope in the light at the end of the tunnel, to know that someone made it through. Very tenderly put. What a guy. I said, ok, for them I will gladly do it. I gave it a good ring and turned around and took the applause. I told people good luck on my way out, smiled and shook some hands. If it made some people feel good, people who are really sick, people in scarves because their hair is gone; if it gave them cause to smile, then thank you John for the explanation and the opportunity to do that for them.

Today was also my last physical therapy appointment. No more trips to radiation, no more therapist coming to the house. What WILL I do with myself without needing to set an alarm clock and shower? Will I shower? Will I get up? It's a very good question indeed. I HAVE to find something. Holy crap, I've been depressed enough when forced to get up and participate a bit in life! I gotta find something.

I wrote notes and took them today to all my radiation people. They all gave me wonderful hugs. What great people, not just doing a job, but giving service as well.

I have some new pain. In the base of my tailbone, and in my left flank? (that's what the PT called it) I call it lower middle back. I've had quite a bit of pain meds today because it was pretty bad earlier. This one is freaking me out a little because in that location, it could mean an organ. Or not. I dont' know. Wont' know until the illusive PET scan, which apparently won't happen for about a month, since I'll still be simmering, and we'll want a good picture of what the radiation has done. The right hip was actually feeling pretty good today, but that could have been the drugs talking.

In order to avoid lapsing into whining and complaining, that's it for now.

Griping, Whining and Tears

Sorry, that's pretty much all I've got. I griped and whined all day on facebook yesterday, since, no, I didn't have anything better to do for Labor Day, then got up in the middle of the night to apologize for it. I had forgotten I decided to keep the sad stuff here and just be funny on facebook. I must say, though, that having a superior following my blog makes me feel a little stiffled. I'm sure I've whined things I don't care for work to know. So, before we go farther, everyone reading, please raise your right hand and repeat after me:

"I understand that the author of this blog says whatever the hell she pleases, that sometimes she says things that aren't really as big as she makes them out to be, because, well, she could be dying here. If I choose to continue reading this drivel, I will take it with a grain of salt, not tell HR, and laugh when she's funny and whenever she says "hey, I could be dying here..."

OK, some things ARE big deals. Life really sucks right now. DES needs proof of my disability status with work in order to process my request for AHCCSS assistance, and my short term disability, which should have kicked in about a month ago, has not yet sent me a check. OK, my doctor's office was a little late getting us the forms we needed to send them, but it's been a while. I was told they were cutting a check on Friday, but today their system said my claim was still pending. I am out of money. The hospital maxed my credit card when they asked me for more payment while I was hopped up on morphine. Prescriptions are running out and I really need to see my primary care doctor (for better prescriptions, of course). Every night I cry before bed. Every time I think about all this, I cry. Everything will be fine in a few months, I hope, but I don't know how I will get to that point.

Had my next-to-last radiation treatment today. My other guy, John, was there! I was so glad to see him again. I saw the doctor after my treatment. This scan issue is making me crazy. She says they won't do it for about a month after radiation is over, so they can make sure they capture progress. Apparently I keep nuking even after treatments stop, simmering, so to speak. I think I got a big dose today. I slept almost all day after getting home. I didn't make my phone calls, which were all to doctors for appointments for which I do not have copays available currently, so I got depressed and went back to bed. Woke up shortly before 8:00pm to my 18 yr old son asking what was for dinner...as if at that age he can't forage for himself! And when, in the last month and while, have I handed him dinner?? We have tons of left-overs from the wonderful meals that have been brought in; it's 9:00pm and he finally remembered a piece of chicken he had put in the freezer from one of those meals.

One of my running-out prescriptions is zanax. The one that keeps me semi-sane. The one that lets me sleep. I took a partial dose tonight to save some for tomorrow. I hope I can sleep tonight.

Listening to my "theme song" on my play list. Awesome song...some of the words (the chorus/refrain) I find comfort in:

Carry on my wayward son
There'll be peace when you are done
Lay your weary head to rest
Don't you cry no more

Carry on, you will always remember
Carry on, nothing equals the splendor
Now your life's no longer empty
Surely heaven waits for you!

Carry on my wayward son
There'll be peace when you are done
Lay your weary head to rest
Don't you cry (don't you cry no more)

I know; I'm a sap and a whiner. I added this song to my play list because they played it on a TV show the other night, and it's my era, and it's awesome...and then felt touched and shored up by some of the words.

I had something else to whine about, but now I can't remember what it was and gosh I hope I can get back to sleep.