19 days into the pain med reduction regimen. 4 days ago I dropped the dose down another level. I'm doing okay with it; nothing is worse. Things aren't actually better yet, so I'm still thinking I will need to get completely off of it. I am also wonder if Tamoxifen has anything to do with the anxiety and depression, though it hasn't started changing any tumor marker numbers, so it may not be working. And I really hope my pain levels are bearable as I reduce this pain medication. I may try the next drop at a two week interval.

At my doctor visit this week, we thought I had been on the Tamoxifen three months already, but as I'm looking at my calendar, it has only been 2 months. My tumor markers rose more (CEA to 140 - remember, it's the trend that counts) this month, but I think I can safely give the Tamoxifen another 2 months before my doctor will start nagging me about Xeloda or Gezmar (? Gez something).

For anyone keeping track, Tamoxifen, while generally a first line option, is my fourth in line hormonal. Fourth and last option before diving into chemo. I don't know if I want to. How long really can living with side effects from the chemo extend my time?

I had a PET/CT scan done yesterday. I will watch my phone for the next few days (starting Monday; scan was on a Friday...a long time ago I swore never to do that, but it didn't even cross my mind this time). The doctor will be willing to give Tamoxifen more time if the cancer is still contained in the bones. Something is going on, based on the rise in the tumor markers over past six months or so, so the scan results will be interesting. Yes, I have a disc, and they look pretty much the same as the last one. But no, I don't know how to read them, so it's really just an addition to my collection rather than a piece of useful info.

A big issue for me right now is loneliness. I face all these issues ultimately alone. I have no partner to help deal with insurance and bills and decisions. I talked to a fellow stage IV patient at the doctor's office about an insurance issue going on right now, and she wasn't even entirely aware of it...implying that her husband dealt with all that.

(The insurance issue: Banner Health has dropped my doctor's office from its contract. In short, they are dropping all community practices to force anyone on a Banner plan to use the oncologists at MDAndersen at Banner Gateway. Should have seen that writing on the wall. I am now faced with getting a continuation of care processed after the 18th and before my next appointment, or changing my Primary Care Physician to get off the Banner network. I want off the Banner network. I don't want to change PCPs.)

Loneliness. I feel the future and ultimate cancer crap sneaking up on me and I know that even though I have family near (sisters and mom) and my son, I am ultimately in this alone. I'm in charge of everything. Today I went on a day trip up north for an anniversary party for an aunt and uncle. My sister drove, and another sister, my mom and I rode with her. It was so nice for that portion of today to feel like I had turned everything over to someone else. I just had to be along for the ride. I really wish that in my LIFE I could, at this point, just be along for the ride.

My son does so much for me. I've realized how much I depend on him just being with me, as Sunday comes around again, and I realize he's not going to church with me, as he has started attending the Single Adult congregation. Good for him. Really hard on me. Hard for me to go without him.

While loneliness if my big depression issue right now, my son's future is my biggest worry issue. Thank goodness he is not a small child with a mother facing this, and my heart breaks for those who have small children in this situation. But I don't think I will be around long enough for him to graduate from college and get on with his life. If I died tomorrow, he would not be ready to be on his own. He has never had a job. He's struggling through college. I worry about affording his medication (for ADD) that will allow him to get through college. If I died tomorrow, or in a year, would his father step up, and take him in, and make sure he has what he needs to finish college? I don't trust in that. I really REALLY feel I need to be around for him to finish college and  follow his dream  to go and teach English in Japan. Maybe that means I am going to have to suffer through chemo side effects long enough for him to finish school. Getting him graduated is going to be  Herculean. I see it being iffier if I am not in the picture.

Sometimes in the middle of nothing I just burst into tears over this.

Hour to hour is my battle with this depression and anxiety.

Every Stupid Scan

PET/CT scan completed this Monday. When the imaging center called to schedule the week before, they offered that Thursday or Friday. I said that I hated waiting over a weekend for scan results, so I scheduled for Monday.

Today is Friday. I have no results.

I wasn't falling apart about it until last night. I was fine Wednesday, thinking surely they would call that day. Then I remembered that my doctor only has hours at the office where I have been seeing him on Thursdays, so surely I would have a call the next day. No call by bedtime Thursday (last night). I left a message on the answering machine category under "test results" this morning. It is now creeping toward 4 pm.

Falling apart isn't the best description. I am tight. So tight I might burst. A balloon resting in uncomfortable proximity to a needle, waiting for the slightest breeze to blow it to doom. Every stupid scan I tell myself I will not get anxious over it. Every stupid scan I swear I can wait a few days for results. And every stupid scan I end up convincing myself that something has progressed while waiting for the call that says something incredibly underwhelming in comparison to the stress in which I have been wallowing, something completely non-informational, like the famous, "The doctor said your scan looks fine."

I swear that if I have waited this entire week for a nurse to call and tell me that the scan looked "fine", someone is going to be wounded.

By Wednesday I was thinking that something isn't "fine", and I haven't gotten that annoying call because the doctor wants to call me himself. Doctor only calls personally when it is bad news. My phone visits every room in the house that I visit. It rests in anticipation on the vanity during each potty break. Doctor has been known to call very late at night, so I don't give up until bedtime.

I answer calls from numbers I do not recognize early in the morning. So far I have had a wrong number (who at least apologized for waking me), a mis-dial from Life Alert (I hope the person who had fallen and couldn't get up didn't suffer needlessly for that dialing-finger faux-pas), and a "financial institution" to whom I lied that Shelli was not available. (Just leaving a number is NOT leaving a message, and if you can't tell a person what your call is regarding, then why would that person call you back? And seriously, if you can't pronounce my last name correctly, or even close, why shouldn't I deny being that person?) I never answer the phone when I don't recognize the number, but I don't dare not answer when I'm waiting for "SCAN RESULTS".

Friday afternoon, and I am torn between worse case scenario and having fallen through the cracks. Yes, I have the disc of the scan. No, I don't know how to read them. I look at them and bemoan the fact that fat shows on a PET and CT. I found a bright colored spot on what I assumed to be the liver area of my body, and discovered that the SUV is at the side of the screen. This bright spot had a much higher SUV number than the other areas. I whipped out the last CD from October's "fine" scan, and found it there, too; dashing my CT sleuthing moment of smugness. Mostly looking at scans I can't read of bones that all look fine to me just further frustrates, and I shouldn't do it. I didn't do it until yesterday. Had my scan results phone call come in a timely manner, I wouldn't have looked at all.

For the non-medical and non-cancerous among you, the SUV to which I refer is not a Tahoe or an Escalade. The "U" stands for "uptake" and it is the level at which the various parts of your body suck up the radioactive glucose now coursing through your veins, bones and tissue when partaking in nuclear medicine.

I did learn one thing while once again trying to glean anything useful from the Internet, however. There are four areas that suck that stuff right up, and therefore appear dark on scans. Brain, thyroid, heart and bladder. The spot in question is none of those four things. I know enough about anatomy, and not much more, to know that.

Do I call again before 5:00pm? I can't possibly make it through the weekend without popping.  On the side opposite the balloon-threatening needle are a wire dog brush and a broken bottle. My COBRA coverage expires May 1st. A year and a half ago I really did not think I would still be around today to face this insurance crap. I'm staring at applications that should have been completed and faxed this week, but scanxiety is crippling my already crippled ability to cope with such things; with the six month void between COBRA and Medicare. Wouldn't it have been easier, certainly more economical, to have gotten sicker during that first year and a half?

Also, there are more than 4 weeks between the third Wednesday of last month to the third Wednesday of this month. Food is almost gone. Bank account nearly on empty, medicine probably not at a level to make it to that magic Wednesday. I'm not going to count it today, that's for dang sure. On a day like today, I need chocolate milk and carbs. Not being able to run out and get some only adds to the helpless, hopeless, catastrophic feeling of balloon vs needle.

Yes, I am catastrophizing. How can I not? I've cried more this week than I like to cry in six months. I'm really starting to wonder if enduring to the end simply means not offing yourself to get out of it all.

Oh yes, they are in for some babbling at 4:30.

 .

Scan #2 down...innumerable more to come?

I've been bad about keeping the ol' blog updated. I had another PET/CT scan, and the doctor said the results look good. My CAE numbers (or is it CEA?) have been trending upward, and there was talk of changing meds. But if the scan doesn't show spread or new spots, then I'd think the meds are doing their job. More blood work before I see the doctor next week, then I'll get more info from him on the scan and we can discuss any needed changes. More on that later.

{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.

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.