Friday, October 30, 2009

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!

Saturday, October 24, 2009

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.

Tuesday, October 20, 2009

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???

Tuesday, October 13, 2009

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.

Sunday, October 11, 2009

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.

Saturday, October 10, 2009

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

Wednesday, October 7, 2009

{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.

Monday, October 5, 2009


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.

Saturday, October 3, 2009

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'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.

Friday, October 2, 2009

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 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 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 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 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.