Happy Independence Day!

 I'm about ready for bed, and the neighbors are just getting noisy!

Changing Meds:

After my 5 weeks off from Femara, the doctor talked me back on to an aromatase inhibitor, and I started on Aromasin. In a week off, when my last blood was drawn, my CEA had risen to a number higher than it has been since my met Dx. I will need to call tomorrow and see what it read after the blood draw on Thursday, after the 5 weeks off from Femara. I also switched from Zometa, to Aredia, for cost reasons. I don't mind the 2 hr infusion time. 

I took the 5 wks off from Femara because I was so upset and desperate over constant weight gain. Every month, it seemed like another 4 pounds. Over 2 yrs, that adds up. The month while I was off, I didn't gain any weight, nor did I lose any, but now, after only a few days back on an A.I., I feel puffy and fatter. How do I reconcile myself to this? All my sisters are LOSING weight, and I just keep gaining. What can I do? My tumor markers say I shouldn't be off of the meds, but I really felt better in the body mass arena while I wasn't taking them. 

I am having pain this week, more than I have in some time. I'm sure it is from starting new meds, starting at almost the beginning, as far as side effects go, like when I started the first meds after Dx. Joint pain mainly. Lower back and iliac pain. Knees. Shoulder. And oddly enough, my left small toe. I think I may have broken it a couple of years ago. It hasn't bothered me in quite a while, but tonight it is very tender, and the tops of my feet near the toes are very prickly-feeling. It's been hard to get up from sitting and start walking the past couple of days, with pain on the left side of my lower back / hip area. Before, it was on the right, so this has thrown me a bit off balance.

It's that time of the calendar rotation when I feel panicked and unable to cope, and feel horrible about always needing to ask for help. This is the way it will always be. It's not like I'll be getting a raise, or over-time pay. It's difficult to accept, just like my weight gain. So this is what my life is to be...always short on money, and always fatter. I may pop before the cancer gets me. 

What a bio-hazard that would be!

 

Any volunteers?

I am feeling the desire / need to vent and whine, but can't decide upon whom I should inflict it. 

Lists are nice...

1. I realized late afternoon that I forgot to take a medication, and that was why I was feeling dizzy. I took it, but still have that gyroscope brain feeling, and also feel tired and cranky.

2. An important email has not been returned. 

3. Trying to hold on to feeling calm about my insurance path, and not let anxiety overwhelm me.

4. I'm sliding into "old". I'm not cool, even if I pretend to be. I'm not even pulling it off in my own mind anymore. And my face is fat.

5. I hope I feel better by morning, because at this point, I am too tired and dizzy to deal with small children, and too anxious and cranky to deal with adults.

6. Do I have a BFF? I don't even know. Is there a BFF in the house?

7. Change is hard. Even the slightest change in the routine of life functions is difficult for me. I like to fix things once and have them ride smoothly from then on. And forever.

8. I didn't start cooking the chicken that needed cooking today until after 8:00pm. That makes for a late dinner, which doesn't help the ol' sleep patterns any.

9. Thinking I may as well round this out as a list of ten now. 

10. Increased pain that I am debating whether or not to tell the doctor about. If I tell him and minimize or rationalize it, he'll ignore it. If I tell him honestly, he may want a scan. I think the bones are what they are, and scanning them again isn't going to do anything more than cost me money and assuage my curiosity. I have decided that I should go ahead with the Zometa next week. 

There. I wrote it out, shed a few tears, don't really feel much better, but no longer feel the need to directly bother anyone with it.

I have been neglecting my blog for a month and a half now! I have had twinges of guilt. I have felt things well up inside me, begging to be blabbed out all over the blog. Somehow I have talked myself out of sharing some of my depression and frustration on facebook, on my blog, and even on my last private refuge, where I can say anything I want, Inspire.com. The longer I go without ripping it out, the more I seem to hold on to it and feel private about it (though my close friends know it's there), and not want to write it out.

Actually, writing it all out sounds exhausting to me. Not writing it all out just leaves it there to gather strength. Nothing unusual, just your run-of-the-mill cancer and can't work worries and stresses. 

I did get to visit my doctor at the newer office. It is a new office, and the infusion room is nicer, with private cubical-type walls dividing the chair spaces. As suspected, however, staff rotates, and I saw many of the same faces that I felt like I needed a break from. It was nice to be in a different place than I've been visiting regularly since March of 2006 though. Even though many people were the same, the place was new and less depressing. 

I'm only seeing the doctor every six weeks now, instead of four, and Zometa is stretched to three months instead of every month, unless I can talk the doctor into stretching it to six months when I see him in March. He'll probably want another scan after that to make sure I haven't had any backsliding. I can't afford either the treatment or the scan. 

My CEA tumor marker was up slightly at my blood draw from December. I forgot to call this week and see where it was last week. I guess I still have tomorrow. I hate phone calls.

I have nothing clever or even snarky on which to sound off, and for that I sincerely apologize.

Loss

We're into the holiday season, and, like every other cancer, and especially metastatic cancer patient I know, I am saddened by the death of Elizabeth Edwards, and find myself contemplating mortality and my possible time allotment.

Before Thanksgiving, we lost a vibrant voice on Inspire.com, in Australia, to her MBC. Shortly after Thanksgiving, I lost a dear friend locally to the same. Like Elizabeth Edwards, she decided that the chemo they held out for her was not worth suffering through, and chose to live her last days without chemo side-effects. Her funeral is this Saturday. I can count on one hand the funerals I have attended in my lifetime, but I will be there at hers, to show my support and love, for her and to her family.

2 days ago, the writer of a blog I follow passed away quietly from her MBC, after struggling for weeks with her lungs. Another dear blogger posted this week that she lost a member of her MBC support group, in Canada.

Not feeling like a very survival-conducive season.

My dear doctor was on the news yesterday morning, interviewed about metastatic breast cancer and the passing of Elizabeth Edwards. He was fabulous, of course, spoke with clarity and confidence, as though he were used to being in front of a camera.

I see him again just after Christmas, and after my crappy visit last month, about which I did not blog, I really need a break from the office. I realized though, that I can take a break from seeing him, but I don't think I can take a break from having my power port flushed. I would really like to not go to the office at all for a couple of months, but that's not going to happen. I am going to take a break from the Zometa. I think more and more they are realizing that problems with osteonecrosis to the jaw are not as rare as they thought, and this month's treatment will be #10 for me. I had originally bargained to do a year, then go to quarterly, and this is close enough. January brings a deductible to meet, and even after it is met, I cannot afford the monthly cost of the treatments. I'll discuss it with my doctor. The 9 treatments I've had thus far, combined with the aromatase inhibitor, Femara, have worked just as they are supposed to, and my last scan was good.

This is turning into a boring blog post. Sorry. Last night as I was falling asleep, I thought of several things to write, but today they are no longer in cranial residence.

I think where it leaves me, besides sad for the families and the loss of friends, is ogling the idea that a good scan today doesn't mean it can't spread tomorrow.

And to reinforce the notion that I may be a hoarder, I spent time yesterday worrying about what will happen to my stuff when I'm gone. Hoarding from beyond the grave, yet too tired to do anything about it now.

I'm almost too tired right now to cry over these recent deaths.

I did have a little cry today over feeling so tired and financially helpless, brain scattered and constantly hungry lately. Half the weight I've gained this year, it seems, has gone straight to my neck and chins. I look more and more like Ursula the Sea Witch with every passing trip to the scales at the doctor's office. I expect to awaken any morning now and find my face a lovely shade of pale lavender.

I am thankful, this Christmas season, however, that my voice is still holding up.  I can still hit the high notes, and plan to be somewhat a germophobe for the next two weeks, as I have a fabulous solo line in one of our Christmas songs. A fellow choir member commented to me last week that my voice seems to be fuller this year.

I think it may be all that extra chin room.

Needle Trauma and Mini-Melt-Down

Yesterday was my 2nd scheduled Zometa infusion and blood draw at the Onc office. I was really fine heading in. A nurse came out and talked to me in the waiting room about if and how much saline I wanted to do this time. When I was called back, I was in fine spirits and a talkative gentleman in the chair next to mine struck up an instant conversation. He has stage IV colon cancer, and is responding well to chemo.

A medical assistant came to take my vitals. I was talking to my chair neighbor, and didn't notice until the stupid auto blood pressure machine squeezed my forearm twice, unsuccessfully, that I had let her put it on my left arm, and hadn't noticed because I was talking. Then I got irritated and told her WRONG ARM and get a bigger cuff or forget it. What good is a medical assistant certificate if you can't take blood pressure the real way?  She said, oh yes, I have a bigger cuff...and successfully got a reading on my upper right arm. Luckily I don't have lymphedema problems.

I was still OK, and chatting with my neighbor, when the REAL nurse came to do the needles. I showed her where my good/preferred vein was and looked away, as I can't watch needle stuff.

I don't know what she hit or missed, but her first stab HURT! And not just the initial jab, but kept on hurting! This is the instant button for me to cry. I asked, through my tears, if this was for the IV, just to make sure we were on the same page, and because I thought surely the pain would stop soon. She said, no, she was taking the blood first. I thought she meant she was drawing the blood with a needle, and would then poke me again for the Zometa IV.

Insert mini-melt-down here. I was crying quite pathetically. She kept telling me to calm down, that I was clamping down and she couldn't get the vein to work while I was clamping down. The pain continued, while I still looked away, and I assumed that all the fiddling she was doing was drawing the blood. I was sobbing. That's how I am with needles. I went on a tirade about the reason I was having my blood drawn here was to be poked only once, that I had only two veins to last the span of whatever life I have left. She tiraded back that no one can guarantee that I will only have to be poked once, which really confused me, and made me more angry. I tiraded that if I couldn't have the blood draw and Zometa infusion in the same needle, that I wasn't going to do either! I was sobbing and kind of yelling.

When she withdrew that needle, I looked/asked/realized that all the fiddling had been fishing and she hadn't gotten the needle in the vein or gotten any blood at all! She got a heating pad and wrapped my arm, and I cried and complained some more about getting the blood from the same IV as the Zometa. She said that's what she was doing, but couldn't get the vein. Well, that's not what I was led to believe, or what I understood. She was NOT patient, or compassionate, and did not explain it well enough.

While I sat there with my arm wrapped in the heating pad, my neighbor asked if I needed anything. (still dabbing my eyes with tissue) I said, "no, unless you have some Valium on you", and then remembered that I DID have Valium on me! I popped a Valium and calmed down quickly, then moved to closed off/vegetative state. The nurse came back and got the needle in, drew the blood and started the saline. The rest of the infusion went off without incident, though I did not go back to chatting, and kept my head down over a crossword puzzle, cuddling the heating pad.

After I checked out, I went back into the chemo room and apologized to that nurse for over-reacting. She said it was OK, that we'd get through this together.

Well, maybe so, but I wont be getting through it together with HER anymore. I have no qualms with her skill (though now I know to specify that if the needle person doesn't get the vein at first, NO FISHING! Pull it out and try again), I did not appreciate at ALL her attitude. I don't know the name of the nurse who did my infusion last month, but I want her again, or the blond one who is nice. If you work in a chemo room, then you need to be able to handle crying tirades with the patience of a pediatrics specialist; I have Stage IV cancer and I'm not happy about it, and I hate needles. HATE! Traumatic! Stemming back to being six years old in the hospital. Lifetime traumatic relationship with hypodermics. I don't need to be berated for tensing up or clamping down, or TOLD that I need to calm down. I know the nurses rotate within the office, and the same people are not always in the chemo room, but I intend to ask that I NOT have this particular person again.

I'm a big baby with needles, and if you're not good at it, or can't treat me like the baby that I am, then I don't have time for you. She asked me if I'd considered a port. I looked at her incredulously and said, "A port for Zometa??"  A port is still a poke, though there's no hit or miss with it. And I don't want a port unless/until I have to do chemo. I'm not THAT wimpy.

Agreeing to do Zometa was a BIG DEAL for me, and I worry about the side effects and possible side effects, and I worry that it's administered by IV.

I want a nicer nurse next time. One who can still explain things to me if I panic or cry. I don't think that's too much to ask. I have a list of names at the local lab of phlebotomists who can find my veins without fishing or trying twice. I don't doubt the skills of the chemo nurses; they are the most skilled in the biz, but I expect nicer treatment and a little compassion.

I iced my arm when I got home. There was a weird bubbled up place in between the two needle holes. I iced it off and on all evening, and it's not swollen this morning, just bruised and a bit sore.

On a better note, no fever and chills last night. I am achy today, joint pain, but I was happy to wake up and not have had any fever and chills.

Always Feel Guilty

I always feel guilty when I get whiny and nervous and anxious about things that are so little in the scheme of other peoples' things.

I have my second treatment of Zometa tomorrow. The doctor won't be in, and so I don't get to see him before the treatment. Maybe that's why I'm having more anxiety about it; I won't get to cry on his shoulder first.

Today I got to explain to a lawyer who is handling my injury case from 2008 (!!) what the prognosis for Stage IV metastatic breast cancer is, and why I can't go back to work. I don't think he asked because it matters to the case, but out of kindness, or whatever...but it stressed me a little. I feel like I have to justify myself to the world, as well as the Disability Insurance company. And then, when asked what my treatment is, I think I look like a big baby since my treatment is not chemo. And I don't want to post this particular whine on inspire.com because compared to what others are going through there, I am a big baby to get worried about just Zometa, and only being on Femara...

So tonight, I feel conflicted. Conflicted and guilty again. I hate guilt, and I hate feeling conflicted. 

And I hate facing my stupid infusion without a doctor visit first to shore me up.

Just really feel like using bad language...(subtitle: Welcome to Effingham)

Ever feel that way? Of course you do. The effing neighborhood is full of barking dogs. The effing neighbors are playing loud music and talking loudly in a drunken stupor. Effing raggedy little noisy kids screaming and running around.

I'm doing this on my effing own. I know people read, and care, but there is no one but me to get the mortgage modification done, to make those phone calls, to contract that bankruptcy attorney and gather all that paperwork. No one but me to be a bad mother to an 18 yr old who still can't clean up and who wrecked his bike again, twisted his ankle, skinned up his knee, hurt his wrist and now can't even get the weeds in the yard whacked down this week while the weather offers reprieve. No one but me to fully shoulder the worry and consequences should he fail to get that honors project finished or that English paper written, and should he lose all his credits and tuition waiver for next semester. This is what I didn't die for? To continue on in parental failure? To wallow through each day in depression and anxiety, a few decimal points short of needing to be on a watch list?

Oh, and now the effing noisy motorbike again; the one they rode up and down and up and down the street last night until well past midnight...

I have no husband for whom to stick around. No small children to finish raising and with whom to spend more time. Grandchildren are a long way off, thank goodness, so they aren't even motivation to keep going.

Shit. Just remembered I set my facebook up to automatically post blog entries. This sure doesn't belong there, and I certainly don't want my son reading this. I think he may be depressed, on top of ADD and barely-into-college teen-aged angst. I had to drop him from my insurance, because I am paying COBRA. I can't even take him to the doctor. Will his father step up if/when I die, if my son still needs to be parented? He sure hasn't shown the ability or desire thus far. I can't do much for him in my current condition, so I really am not seeing how not dying really was of much benefit.

Don't anyone dare say you would miss me. It's not about you missing me. It's about me hating this effing futile existence and wanting out. 20 more months in the countdown to Medicare. Anything serious comes up between now and then, tough shit. I'm not having any surgeries, brain radiations or seeing any orthopedic doctors. I'm not changing medicines or doing any chemos. Even if I do make it to that magical two-year mark to which the government is sure I'll live in order to see Medicare, I am not doing anything drastic to drag this crap out. So nothing better break. Effing bones had better hold up with this effing Zometa treatment. Effing CEA numbers had better stay where they are with Femara. If it spreads, it better spread straight to somewhere that will kill me fast, because I am not putting myself through treatment HELL to stay around and suffer through more of this effing life. This effing neighborhood. My effing disability qualifications, the effing guilt and the effing frustration, futility and daily funk.

Perhaps, as the anonymous internet comedian at some point said, my only purpose in life IS to serve as a warning for others.

If I thought skipping my Femara would be a speed pass to ending this effing mess, I would stop it tomorrow. I am not to the point yet where any speed passes are available, however.

(pause)

Went to meet the woman who is using the photos of my bracelets in paintings! They are so beautiful! She's going to give me one when they are all finished!! Poor Ellen though; I cried on her shoulder, spilled bad life attitude all over her, and she'd just met me. Well I wasn't exactly in good shape when I left here to go meet her!

I do feel a little better now, for having verbalized it to poor Ellen. Haven't changed my mind about any of it, just no tears streaming down my face at the moment.

First Zometa Treatment

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

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

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

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

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

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

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....