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.

FEAR

November; the month of Thanksgiving. (I am thankful that Pinktober is over, and I'm sorry, but it wore me out on the subject of being aware of anything.)

On Facebook, my friends and sisters are posting a thing a day for which they are thankful. I didn't start on the 1st, and thought I could take a pass, but was told I could just list four things today, and catch up.

It's not that I am not grateful. I'm not ungrateful. I realized this morning that my biggest thing, which most may interpret as negativity, is that I live every day in FEAR. Sometimes debilitating fear.

Yes, I have cancer. I have Stage IV cancer. Surprisingly enough, the cancer itself, and even the prognosis, are not the sources of my daily fear.

I live in fear that I will somehow lose my disability through the private company, which supplements my SSDI. They regularly reverify my disability and the stress and fear from that lasts for months. I fear being told I am not disabled, and should go back to work.

I fear daily that I will never make it, financially, to Medicare. I have to have help paying my COBRA every month, for which I am very grateful. I'm at the end of a year right now, and at the out-of-pocket limit, which is good. But I can't afford co-pays still, and prescriptions are a huge chunk of my monthly funds, and right around the corner is January, and a big fat $500 deductible. I am grateful for a relatively small deductible, though, it's only been for the past two years that I've had one at all. So, come the first of the year, I will be paying for COBRA, but not be able to afford to use it because of the deductible. That makes no sense.

Everyday I stress and fear over the bills, and feeding my family. I fear that down the road I could end up losing my house. I fear not being able to put gas in the car.

Are you seeing a theme here? Fear, caused by money issues. Depression, anxiety and fear...not from my condition, not from incurable cancer...but from the lack of money.  I just realized that's what it all boils down to. It's hard to see any light at the end of the tunnel, any break in the near future, any hope in making it another year to qualify for Medicare.

And the bills need to be paid, and we still need to be fed. It's the month to express thanks, and it seems everything I list as something for which I am thankful comes with a caveat that is based in fear and based on finances.

Sorry folks, no great insights there today.

Breast Cancer Awareness slogans I Hate and why I am Cranky this month...

October. I knew it was coming. Things started turning pink round the edges, and then BAM, full pink bloom. Pinktober.

Personally, and yes, it is usually all about me, I hate the constant reminder that I am no longer a "survivor". I was stripped of that title when the cancer came back and branded me with a big 'IV'. Yesterday I was asked if I'd hit my '5 year mark' yet, and how far "OUT" was I? My reply was that I barely made it three years before being thrown back in, and there's no getting "OUT" of this one. I'm ONE year IN.

As far as the Pinking of October goes...yes, it's all over the top; all the questions...where does the money really go, how much of it goes to research, etc (check out http://thinkbeforeyoupink.org/). Women should be aware, women should get checked, and more money needs to go to research. A cure? Not holding my breath for that one. More effect treatment that is not so toxic to the patient would be a good start. Prevention opens a whole can of worms that we really can't solve unless we go back to the pre-industrial age, IMHO. There are things we can do, but there are no guarantees still.

I HATE "Save the TaTas", "Post a Pink Bra" on your profile, and all the things that draw attention to boobs, jugs, melons, golden bozos, Winnebagos, or even Hooters (thank you Steve Martin)...because not everyone who has gone through this wretched disease was ABLE to "save" their breasts!!! "Save the TaTas" is a slap in the face to anyone who had to have a mastectomy, single or double, who lost all or part of what our culture serves up as the shining beacon of femininity!

I know some of us are more attached to our breasts than others. The decision to lose them or try to keep them is easier for some than for others, but I digress...

The PINK is out of control.

To me, someone who has "been there", what does the PINK RIBBON mean? I do think the pink ribbon has merit. I do still believe that there is power in the pink ribbon. (Gasp! yes, I said that.) When one has just received the devastating diagnosis of breast cancer, when one is facing the new myriad of treatment options, testing, scans...when one is in the middle of this horrifying disease, for which no one signs up...

A pink ribbon on a bracelet, or a blanket, or a brooch says "others have walked this way and many are praying for you". It is courage to face those wretched treatments, knowing that there is an end and better days ahead.

So yeah, there isn't an 'official' color for Metastatic Breast Cancer, which is still technically breast cancer, but we're mostly too sick (though we often don't look it) to be at the Susan G. Komen walk and parade ourselves around as 'survivors'...I'm not dead yet, but I know right now that I have NOT survived breast cancer. (big run-on sentence)

I've voted for Dirty Pink...dragged-through-the-gutter-and-stepped-on pink. It hasn't yet caught on much, other than with me, and really, that's what matters, right?

I would like to opt out of Pinktober. I do have friends who ARE still cancer-free after breast cancer, and this month is for THEM to celebrate.  But it's not for me. And we don't need a whole month. Unless someone stumbles upon the cure this month. Maybe at the Komen walk, if someone keeps their eyes open. You never know what you'll find under a bush, or next to a trashcan. They are, afterall, "Walking for a Cure".

More Port Ponderings

I've had the new Bard Power Port for about three months now I think. Once in a while I still get pain twinges on the skin covering it, and I suspect that something to do with depleted hormones affects scar healing.

As shown in this lovely picture, it sports "a unique triangular arrangement of three bumps called Palpation Points on the soft top of the port", making the needle target easy to find.

They look obvious and hard to miss. I am, however, still feeling angst over the fact that I can only palpitate one palpatable point. It is the one at the lower point of the triangular configuration, and is clearly visible through my skin. In fact, sometimes I wonder if it is possible for it to eventually wear its way THROUGH my skin.

I am not sure which bothers me more, that this one may pop through, or that the other two are seemingly nonexistent. They are clearly in the picture. The doctor and the nurses close their eyes and feel for them, and swear they are right there in place. Why then, is ONE so clearly prominent, and the other two, of purportedly the same size, impossible for me to feel?

This doesn't bother me as much, though, as wondering if it is possible, however rarely, for the catheter to pop off the little purple end. Sure, there are ridges, but I don't see anything more secure than that. Sitting low on my chest, and down into breast tissue, it doesn't exactly rest securely in a stable spot. Boobs MOVE. Big ones move even more.

When I had the placement procedure, the doctor taped my breast down, to keep it from falling down under my arm while on my back, and thus skewing placement. Good plan, but when I sleep, on my side, I do not wear tape. This is difficult to explain, and I fear I did not impress my concerns properly upon my physician. I think he thought it was just a bit of a chat about my breast. My concern is that it will move around and flip, or unplug.

I haven't had an honest to gosh put-on-the-paper-gown breast exam in over a year. Last month he did feel around my lymph node area under my arm. Tuesday, I am taking my fabric substitute for the paper gowns that never fit, and insisting on an exam, and showing him what the port does when I lie on my side.

Yes, it's a pain to get undressed and dressed again, and yes, for awhile it was difficult to do my own bra, and yes, regular scans should, in theory, suffice. But the time has come. I don't care what he thinks, and if it makes him somehow uncomfortable, tough ****; he's a freaking doctor.

Not that I don't adore him. I do. But sometimes I feel like I don't get as much attention to detail as I would like. I know that none of these questions will effect my prognosis one way or the other. So I guess I need to reiterate that to him - I don't care that nothing is going to make me GET better; my main concern is FEELING better, or at least not feeling worse for as long as possible, emotionally and physically. Avoidance of stress and pain, with the clear understanding that I accept this prognosis.

With that said, it is also time to get another scan done. Even considering a scan or possible spread brings on the 'scanxiety' and tears. I wonder at it, since I know how this story ends. It must be the fear of not being able to avoid the pain and discomfort as this disease progresses. Scan time makes me step closer to my mortality in my mind's eye, dropping the drapery of denial that keeps the prognosis at a more tolerable distance.

Definitely making a good list this time for the doctor.

The Bard purple Power Port

Sleep hath eluded me. I feel sleepy sitting here, but I followed my ritual and still felt bored lying in bed.

Bedtime Ritual:

1. Log off the computer at least a 1/2 an hour before I want to go to bed.
2. Ask Bradley to get me my medication / supplements for bedtime. I'm getting tired; too tired to think hard enough to find my own medicine. That should be a good sign.
3. Head for bed, soon to be joined by the cat who has claimed one of my pillows.
4. Play game 1 of my handheld electronic Phase 10 game.
5. Pop that last sleep helper, now that I have settled in a bit.
6. Play games 2 and 3.  I have found that three is enough to get me tired, but 4 is enough to wake me back up, and long enough for my hip to hurt from lying on my right side.
7. Roll over and attempt sleep.

Tonight it didn't seem to work, and I found myself staring at the ceiling, thinking of the writing I have not done, wishing I were better at it, and needing to use the restroom. I should probably do that now.

It's been 2 months since I last wrote. Every time it seems I think about doing it, I'm really too tired for it. I may not get much further than this, but here goes...

It's been nearly two months since I gave up on the search-and-destroy game with my veins, and got a new port. A Bard purple Power Port. Yes, I love the alteration, but have failed to come up with a name to fit in with it. I wanted to name the port, but nothing is coming to me, nothing feels like "it". Perhaps, after only one accessing, we are not yet bonded enough, my port and I. I must say, however, that my first accessing of it, almost four weeks ago, was a breeze! No tears, no white knuckles, though I had them ready and in place should I need them. Accessing number 2 in four days.

It was a hard decision for me to get another port. In my mind, port equaled chemo, or at least the resignation to the idea of some day having chemo again. Four appointments of blown veins, small veins, multiple attempts, crying, yelling, tears and sobbing finally changed my mind. The procedure was quick and done under twilight sleep (no, they did not make me watch Vampire movies...) with that lovely drug, the name of which escapes me.

This is a picture of the very port I now have hidden beneath my skin, at the top of my right breast. I wished that the purple were glow-in-the-dark purple, and that is showed through my skin in the dark. That would be cool.

Of the three bumps the literature assures me are there, I can only feel one. This one bumps is so prominent, I cannot understand why I cannot feel the other two! Maybe when the incision heals up more completely.

Speaking of the incision, the liquid bandage stuff they put over it lasted nearly three weeks. In one spot, I could see a bit of blood. When the thing finally came off, the blood had coagulated and the skin did not adhere to itself as nicely as I would like  in one place. A week or so ago, I noticed a white spot in the unadhered area. Thinking it was skin, I picked at it a little. It seemed flappy, and flat, but I could not get at it with my fingers. I got my tiny tweezers and plucked at it. Out came a suture, about an inch long!!  My imaginary scenario is suturing the four anchor places, cutting the thread, and not picking it up before the incision was glued shut! No harm; it didn't hurt at all. It's still not really healing well in that spot though.

The only thing that really bothers me about it is, well two things maybe, that the sticking out part could have been the source of blood leakage which caused the scab which didn't let the skin close up smoothly, and that it just really speaks of being in too big a hurry during a procedure! I mean really! I don't even like to think about how they shuttle people in and out of those outpatient procedures. The nurse assigned to be with me during it was very nice and helpful; I'm just a tad annoyed over the hurriedness that must have led to leaving a cut piece of suture sticking out and then covering it with liquid bandage!

The placement is much lower than my original port in 2006, and it is smaller and less prominent. The small incision where the tubing is threaded into the blood vessel is about an inch higher than the not-so-small incision from my original port.

This is how it works: the tubing goes up, beneath my skin, and is then threaded in to blood vessel to turn and go down.  Special clamp safety needle thing must be used for these Power Ports, which are thus named because they can receive more powerful infusions, such as are necessary for dyes used in scans.

I am pleased to have it now, and hope it lasts a good many years, possibly as many years as I have left.

I have more to write and whine and ponder, but I find I am feeling sleepy. This is a good thing, yet I must be sure to get back to this before long. I shall leave myself some clues, and see if I get back on the right track - I need to confess more reasons for why there hasn't been much posting action here, and ponder and discuss my feeling toward death, a topic over which I sometimes obsess, and which was brought up at a party by my good and dear friend Jamie.

But for now, Second Chance for Sandman...!

The Sisterhood of the Traveling Hat

This past weekend, I was treated to a terrifically rare treat and escape. Friends of mine from when I lived in NM, whom I haven't seen since college, and longer, invited me, via Facebook, to join them for a Girls' Weekend in Las Vegas! Because of their incredible generosity, my only outlay was for souvenirs and a few tips. 

We stayed in the VERY swanky Paris Hotel in Vegas, where I had my own room, overlooking the pool, the Eiffel Tower and the water show across the street. Not that I spent MUCH time in my room during waking hours; we were on the go from Friday afternoon to Monday midday. I honestly am amazed that I kept up as well as I did and did not collapse!

The highlight of our trip was having tickets to see Donny and Marie (Osmond) perform at the Flamingo Lounge; a very intimate and up-close venue. To my further surprise, while the girls told me "oh, we don't have very good seats", they were just teasing me! We actually were seated on the right-side half of the stage, a mere two rows back. I could see the sweat on Donny Osmond's FACE!! THAT's how close we were!! I swear when he came over to that side of the stage, our eyes met, and Denise swears he winked at us. (We were all wearing purple of some sort, for Donny, and by this time, all crying like school-girls with the newest issue of TigerBeat magazine!)

When it was Marie's turn to be on our side of the stage, we were cheering, and, noticing our purple and enthusiasm, she pointed right at us, gave us the "thumbs up" and said "you go girls!"...that was awesome!

What a dream come true to be so close to the star of whom I've been a fan since before my age had double digits! Denise even had a purple room as a youth, to show her adoration. I think it moved up past 'seeing real whales in the ocean' and into first place on my list of "most amazing thing I've ever seen"!! It definitely makes the bucket list, which I seem to be filling in reverse, starting with this amazing trip.

Donny and Marie did an opening together, then both took solo rounds, then finished together. Being so close to them, we could see the genuineness in their eyes as they spoke to one another and laughed and related with the audience. During Marie's solo time on stage, she asked a question, I don't remember what, but ended up talking to the people sitting in the front row, directly in front of us.  Stuart and Becky, from Cedar City. It was Becky's birthday, and this was her big surprise. Stuart was wearing (to a concert event) a brimmed cap from CABELA's. This may have caught her attention. She called Stuart up onto the stage and tried to get him to sing along with her. Apparently Stuart doesn't sing. Then she tried to teach him a dance step. Apparently Stuart doesn't dance. He did get to have his arms around Marie Osmond's waist, so how can that be a loss? It was all quite hysterical for us, embarrassing for Stuart. Becky, however, came out on the good end of that deal, as after Stuart returned to his seat, Marie offered them free back stage passes to the meet-n-greet after the show!!! WOW! What a freakin' amazing birthday present for Becky. We all cheered for her and patted her on the back, not without a degree of envy. 

When it was Donny's turn for his stage time, he was of course drawn to Stuart and the hat. He laughed over it and asked Stuart to toss it up on stage, which he did. Donny donned the hat for a moment, laughing, then tossed it back to Stuart. We were all ga-ga over the hat. Can we hold it? Can we touch it? Can I touch it with just one finger around the inner brim where Donny Osmond's sweat now resides? Stuart let me run my one outstretched finger around the inside...then I squealed and held my hands to my face...might have looked like I was smelling the finger...perhaps I was.  Karena even made an offer on the cap, which Stuart, however, declined. 

We all four cried off and on throughout the show, and really lost it at the end when Donny and Marie sang their famous goodnight song from their television show, back in the day. Tears in our eyes, when the show ended and all stood to leave, we again congratulated Becky and I realized Denise was still trying to talk Stuart out of the hat. She said later, she thinks he was more worried about going without a hat, than any sentimental tie to the headpiece. Staff were waiting to escort them to the meet-n-greet, and Stuart gave in to Denise - I have no idea what finally sealed the deal for her, and I don't want to know...she turned around to me, handed me the hat and said "this is for you!"

Flood gates open...I bawled like a baby...I could not believe that on top of all her generosity, she was giving me this hat! This hat that now bore (in addition to Stuart's sweat) Donny Osmond's perspiration! (I know this because he was really sweating up on that stage!) They made me wear it out of the theater, while I cried more and tried to wipe my eyes. Thank goodness I'd had the forethought to wear waterproof mascara that night. I took it off after some pictures with it in front of Donny's mirror ball trophy from Dancing with the Stars, on display in the lobby, but then took it off, as I didn't want to further dilute the perspiration of THE Donny Osmond!!

The Osmonds left us with such a warm feeling; they are working their butts off at that show right now in Vegas, and yet they smile through it all, are happy, and fake nothing. What wonderful, genuinely warm people they are. It was a privilege.

My companions, Denise, Anna-Marie, and Karena are friends from many many years ago. Yet on this trip, our personalities melded and we got on comfortably and easily, as though we hung out every weekend! I wish we could. We have so much in common, and such similar temperaments. They were all truly generous and patient and loving with me. I felt loved and cared for and truly wanted in the group. I love these new old friends and am so grateful for their love and generosity, and understanding of my abilities and lack thereof. No words can convey my appreciation, though prayers have been sent up in their behalves every night since the trip.

And the hat...The Hat awaits a display case where it will rest with the purple satin skirt I wore to the show. I am currently sleeping with it by my bed. I think that some day it will become The Traveling Hat, and we four will be the Sisterhood thereof.  

Thank you, my dear friends, for fulfilling a life-long dream for me. Thank you for being the caring, open people that you are, and for including me on this very pampering weekend. Truly, words cannot express my gratitude.  I am truly blessed to have you back in my life, however long that may turn out to be. Thank you for accepting and not being put off by the C-word and my diagnosis. Thank you for making me feel acceptable and lovable and FUN! Pleasant memories from youth are now once again enjoyable, real relationships in my adulthood.  The years have made us stronger, and better, and smarter. Each of you possesses qualities I admire and choose to surround myself with! 

You know who you are...love, hugs and joy!

Shelli

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.

The Weather's Quite Divine...

This morning, I awoke at 5:30am. I am not sure what exactly did the waking, as this is about 30 minutes earlier than my usual early morning rousal, but I smelled something funny.

I sniffed; it smelled almost electrical! I got up and sniffed the fan on the dresser. Nope; this one was fine. I went over and sniffed the fan by the open door. No, this one is fine too...wait a minute! Sniff, sniff...now the chickens have seen me and are demanding food. Sniff, Sniff...OH MY GOSH! I went out to the yard and the chickens and identified the smell...

One of my neighbors is smoking the ganga at 5:30am!!

Wondering...
...can you really get stoned from second-hand MJ?
...what kind of eggs will my chickens be laying if they are high??

Of course I left the door open! The weather was great at 5:30am.

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.

I've never even BEEN to Maryland

I've been plagued the past week or so by questions from my long-term disability company (through my work, not SSDI) regarding my continued disability. Seems their goal, over compassion, is to find a reason NOT to pay the disability any longer.

It started with a phone call follow-up last week to see how I was doing.

"Well, I still have cancer", I said.

A friend later suggested I might have told them that I am still dying from cancer. He wondered whether they were checking to see if perhaps a miraculous event had occurred, that perhaps I'd washed in the pool of Bethesda or something.

The call was followed up with paperwork for my doctor to fill out. A nurse called to check with me on the questions regarding how long I can sit, what I can lift, if I can reach, drive. The doctor assured me the other day that he'd do what he needed to do to show them I shouldn't even try to work.

I can't do my job. I couldn't do it right now even if I only had to work alone with no one else around. There's no way I could do it with the added pressure and stress of bosses, co-workers and clients. I'll never get back to where I was before my diagnosis and hospitalization. Not physically, not mentally or emotionally, not in my ability to cope. OK, those abilities were questionable already, but 8 months of treatments and fatigue and pain haven't improved those.

If this portion of my disability decided I was fit to work, I'd have to just lose their support. Apparently they'll torture me with these questions every six months, and then at the 2 yr mark, will evaluate whether I am able to do ANY job.

Maybe the 'cure' will be found by then. Yes, of course that was sarcastic. I won't hold my breath. I know they're doing their jobs, but maybe they could have a flag on certain files, to Google the condition first, to see if the prognosis is still, well, death, before placing regular guilt trips on the patient about being disabled and facing just such a prognosis.

Yes, there is the possibility of living for years with metastatic cancer to the bones. That doesn't, however, mean years of easy living. There is really no "improvement" or "rehab". The longer you live with this, the worse the treatments get, and the more damage the disease does without killing you. Hip replacements, spinal fractures, chemo, radiation, and eventually; spread. Spread meaning worse treatments, worse chemo, more radiation.

I'm still on the first tier of treatment attempts. I started Zometa last week, to shore up my bone strength and try to prevent fractures. Side effects? Fever, chills, and more bone pain. It's been a week since the first infusion, and I still feel worse than I did before the treatment. So far, my Femara seems to be holding up. I don't have to change yet.

There are only so many out there to go through. This should be good news. It doesn't feel as good when the Disability Insurance company starts the questioning.

Thanks a lot, guys, for sending me into the depression corner again.

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.

Day of Art at Banner Desert Medical Center

Twenty-four hours until my tax appointment. Am I ready? Almost. Should I be working on that instead of blogging? Probably.

Yesterday I participated in the Day of Art at Banner Desert Hosp, sponsored by the oncology department. I guess they do it twice a year. The paintings done at these events line the halls of the oncology unit in the hospital. I saw them when I was hospitalized in August, and thought I could never do something sparkly and positive, but really wanted to do something.

So I did. It is a version of what I worked up on the computer.

Every painting has a story underneath it on the wall, written by the artist. Hopefully I can find where it ends up being hung, and get a picture of it framed and on the wall.

Metastasis is the unpublicized part of this breast cancer ride. it is the part for which there are no parades, no pink ribbons, no feather boas, no emotional marches.


With the Stage IV diagnosis comes the feeling that one has been de-ribboned and stripped of the title of Survivor.

This is the dirty pink underbelly; the part that exists without glamour or glitter, where the only pink ball caps are the ones dropped in the gutter, stepped on and run over.

It is a dirtier shade of before, a bit soggy and cloudy, and for some of us, the new reality.

It is a cold rain on the pink parade.

Of course, since yesterday I have thought of at least half a dozen things I'd like to change, or do differently. That lovely trait would be why I rarely actually finish projects, decide on a color to paint my walls, and why I like the computer for scrapbook pages.

At one point when I started on the umbrellas, I feared they looked like pink pumpkins, then boobs. Thank goodness they turned out umbrella-y enough.

Mostly old people there, several people I knew from the support group, several with METS also. Later in the afternoon a couple of younger people came, and it always breaks my heart to see women so young battling cancer.

It was outside, in a garden area between buildings. We had very nice weather and shade most of the day. I had some help at the end with some of the shading. The counselor who facilitates the support group took pictures of each of us with our painting when we were finished. I'm sure that's a lovely shot, after being in the breeze and working and concentrating all morning. It started at 9:00am, but I didn't make it there until about 10:00am. They had a light breakfast, and then served lunch as well (yum!) I panicked a bit midway, worrying that I wouldn't be able to finish by wrap-up time (3:00pm), but I actually finished by about 2:30pm.

I got compliments on my painting, and said to the counselor, 'yeah, they haven't read the story part yet'...haha. One of the other METS ladies understood it though. The counselor said she was glad I did it, and that it needed to be said. I agreed, and shed my only tears of the day.

It's not all rainbows and puppies and pink ribbons.

The new image I have in my mind is being piled upon by all the things I have to deal with, that keep me from focusing 100% on the last thing in the pile; having cancer and taking care of me. That might translate more universally across the cancer lines. I'll work on that idea for six months.

Better?

I am sleeping better.

I am walking better.

Some days feel better than others.

I may even look better.

But I will never 'get better'; will never 'get well', 'be cured' or finish treatment.

Stage IV cancer; treatable, but not curable.

I read on the posting site I follow for Advanced Cancer (metastatic breast cancer) that someone who was a frequent poster had died in October. I joined in January, so I never had contact with her. But it made me so sad. Her last post was that she was going into hospice. Then a while later, someone posted her obituary. So, of course, I started googling hospice, and crying, because it's hard when the bare facts hit you right in the face. All the hospice sites show old people. REALLY old people. I don't want to die in the company of sick old people! Is that awful to say?

I know they can come to your home too. I guess I'd better get cleaning...I know I surely have several years, but it will take me that long to get my house ship-shape! I guess I worry about the 'palliative' side of things...wondering how bad the pain will eventually get.

My PET/CT scan results were good, according to the message my doctor left me. He said we'd talk more at my visit.

I spent yesterday feeling guilty about not working, about being on disability. Not a very productive day, and I do have things still to deal with, too many things. But I didn't cry until I read about Lucy (the lady on the website) passing away.

Same things still looming, undone. I think I'll go read a while.

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.

Karaoke and Gravy

After my diagnosis, before I found out that death was not automatically right around the corner, I became a bit obsessed with death and dying. I thought about it a lot, enough to start thinking about what I wanted and didn't want.

I decided I wanted to be cremated. My mother's response was, "NO one's ever done THAT in our family before!" in a tone of "no, that's not possible, surely not!" Of course, she was not the first one by whom I ran this, and by the time I did mention it to her, I was sure it was OK to do (religiously) and SURE I did not want a big chunk of my life insurance policy to go toward the purchase of real estate and a fancy box in which to store my corpse.

I found I started planning my funeral / wake as though I were actually going to get to be there!

I don't want the traditional funeral service. As I'm sure I'll be an embarrassment to my family for not allowing them to parade my corpse-laden casket from the funeral home, to the church, and then to the cemetery, I am sure they will be OK with an other-than-traditional service. I'm sure they will want to conceal the fact that I am ashes in a cardboard box at this point. It came up again the other night while playing cards with my mother and sisters. My mother again objected; I looked her straight in the eye and asked if SHE wanted to pay for it her way.

No viewing! No embalming. No saving the body and cremating later.

I want a wake, of sorts, maybe a short memorial type service. They can sing spiritual and uplifting songs. They can eulogize, if anyone can think of nice things to say about me. (HEY...if I write my own eulogy, they won't even want to read it! Then I'm sure to get my way!)

But afterward, I don't want the traditional luncheon for the bereaved family.

I want a party! With everyone I know and all my friends! Especially my friends! I want KARAOKE with a DJ. I even know who I want.

I've toyed with the idea of those little pendants in which you can store a bit of the deceased's ashes. Party favors, if you will.

I have friends who will come to whatever service I have, even if they are not completely comfortable with the church scene, but these are the friends who understand me best! And I don't want a bunch of mourning; I want a send-off! I plan to put an invitation on Facebook (when the time comes; exact date to follow).

And I want them to serve GRAVY!

I love gravy. All kinds of gravy. Brown gravy, white gravy, milk gravy. I heard Paula Deane once say that where she comes from, gravy is a beverage! I'm not from there, but I LOVE GRAVY! And I don't want "funeral potatoes". (My sister loves them, and wants to have them anyway) ...Homemade rolls to dip in the gravy. Homemade mashed potatoes. Ice-cold milk, and an option of Pepsi products. And brownies for dessert.

And dancing! Karaoke and dancing! Then when everyone is fed and having fun...then they can have open mic to say fun things about me, even nice things if anyone dares...and KARAOKE!

Someone will have to sing 'Barracuda' in my stead.

The Other Foot. When is is scheduled to fall?

I had a night of insomnia late last week. I was doing a med change, because I didn't want to pay non-generic copay for Pristiq when I didn't feel like it was a wonder drug. I was supposed to cut my dose that that in half for two week, meanwhile starting Trazadone at night, and after the two weeks was going to go on just generic Prozac. Several years ago, Trazadone was prescribed to me with Paxil, and it pretty much knocked me out at night. I think I tried the Trazadone last Friday night....and was awake until 5:00am. I panicked. I can't do the sleepless nights thing again, I can't let my schedule get completely turned around again! So Saturday night, I said, "screw it" and went back to my 4mg of Xanax, and 10mg Abmien.

A couple of days later, I found I was actually in a good mood. Huh? Wha? So I went back to my full dose of Pristiq, and I am weaning down the Xanax. 1mg Xanax last night with the 10mg Ambien. Woke at a decent hour and WANTED to get up...didn't have to force myself. I haven't taken Methyphenidate or Valium during the day all week.

Today is Thursday, and this feeling not-so-stressed is starting to freak me out. How long can this last? Could it be that Pristiq IS a wonder-drug? Could I have been having some sort of rebound effect from the Xanax? And why the heck did I say up all night on Trazadone, when it worked for me before?

Ok, maybe my body chemistry and functioning has changed since having cancer, poison pumped through my body again and again, and enough radiation to nearly give me spidey-sense. No, that's wrong...the big green guy was the radiation. Anyhow, that could explain the changed reaction. Or it could be the "possible side effect" of the Femara making Zoloft and Trazadone not have the same effect on me.

I have 2 xanax left. I'm going to try .5mg tonight. I should probably call my doctor and tell her what I am not doing (the new meds, going off Pristiq), and get her started on getting me that card from the Pristiq makers to make the copay only $25 instead of my $40 for non-generic. She said, "Look on their website", website said, "Ask your doctor". I took the info to her, she filed it for future reference as I was planning to go OFF it...but now I think I should stay on...

This morning on the way driving my son to school, I was hit in the stomach with this feeling of waiting for the other shoe to fall. I'm not used to feeling "OK", really OK, not just what we say to people when they ask how we are. (I don't say well, or good, or fine anymore; "OK" for the day is seriously as good as it gets with Stage IV cancer.) But this new mood...strange, new sensation. How long can this last?

I got a little more stressed when I called my SSDI contact, and her voicemail box was "unable to receive messages"...for the 2nd time...either she's not emptying her vm box, or she's not there any longer. Now I have to try to find someone there to talk to and explain my current issue...Hartford Disability (my long-term through work) needs "documentation" from SSDI (their mistake) that I'm NOT receiving SSI for Brad, since he is NOT a minor...spoke to both sides verbally, but Hartford wants it in writing before they will resume paying me that amount.

Eligibility for SSDI started Jan 1st. Still no check. Said to be coming in February. Meanwhile, this puts me VERY behind on EVERYTHING, and going on a month and a half with no money.

My mom is sick and so I can't go to her house. Usually I do better with phone calls at someone else's house. I hate phone calls. So, I'm a little stressed right now, but not paralyzingly so, as I usually get. Time to search through paperwork for some other contact info and maybe an ID number before I call and try to speak to a new person. Deep Breath.

Maybe a little comedy video first...

"Rain on the Parade"

New Friend with an Attitude I LOVE...

I was happy today/last night to meet someone on a new site who feel rather like I do about the breast cancer "Pink Zone" as she calls it, and the METS "Dirty Pink Underbelly" as I call it. I told her I felt like I was always feeling like I was raining on everybody's pink parade at my support group. So now I'm working on an "art" project.

It's still really difficult right now. Mornings I am tired, afternoons I try to stay busy, and then evenings I get depressed and wonder how I will face another day. Counselor appointment tomorrow, so that's good timing. Dang it...forgot to go and get my prescriptions today. Changing meds again (not cancer meds), just the depression, sleep, anxiety meds.

I thought I had more whining to do, but I think I'll go read my new friend's messages again!

Crappity Crap Crap Crapness

Yeah, bad words...running through my head. But listening to my uplifting music and trying to get through this part of the day.

I did not even take a baby step today. Unless paper-clipping two important papers together can count as a baby step.

Missed church yesterday. Had my clothes all laid out, bag packed with music, scriptures, everything...then woke up and could barely move without pain. Even the knuckles in my toes hurt! Could barely move my fingers, knuckles hurt so badly! Arms and shoulders too. Didn't know to what to chalk it up until I heard on FB from a friend that she couldn't get up either and said it was her fibromyalgia. So...something in the weather, must have been my fibro. Stayed in bed nearly all day, missed church, showered later (new thing; standing in the shower and crying), went back to bed, got dressed only because Mom was expecting us for dinner. Had to take the walker! Got some ibuprofen on the way (of which I was out) and have been taking that.

I hated missing church, now that I'm able to get there. And choir practice! Staying on the ibuprofen, the only pain med I am on, and it helps me walk easier. More easily. You tell me, Mary. But...hearing that it was blamable on the weather, I was oddly relieved that it wasn't cancer having a growth spurt overnight!

I have been reading blogs and posts of fellow METS survivingers...surviving day by day...and people going on and on and on...cancer spreading, more chemo....still going on and on...GOOD ON THEM!! But I don't want to go through all that!! I want to go in for a scan one day and have my liver be COVERED in inoperable lesions and those effing ridiculously low numbers that I don't trust anyway having gone SKY high....couple weeks in and BAM...Alma 40:12.

Seriously, my doctor telling me that the 5-15 yrs my radiologist told me is "best case scenario" is starting to seem a bit low-balled! I'm thinking too much about it again, and stressing...because I have so much to stress about!

Sister helping me with the logistics of the fiscal solutions (ah ha, make sense out of that!), and she says "baby steps, just do something each day"...but some days I just can't do it! And I need to go faster, get this crap done!! They keep telling me if I can get through this fiscal crap, get on a level playing field, so to speak, I'll feel so much better...and then be able to try to make it through the 2 effing years waiting time on SSDI until I qualify for Medicare...meanwhile 2 years of COBRA will surely land me living in my car!

That is my fear. Living on too long, too much to deal with, and ending up living in my car.

Yes, bad attitude day, I suppose you could say.

BUT I'm making, and have made about 5 so far, bracelets with letter beads that say "surviving". This is my quest, to make that more in vogue that "survivor", which I may have discussed earlier or not. If not, I'll go on about it later. I want to make a BUNCH of these bracelets (got more letter beads on sale this week) and give them out in my support group, and my friends at church who I know to have had cancer. Tiny little bits of positivity here and there, until I get bored sometimes, and frustrated.

Posting while my Playlist is running is messing it up, and I want to listen to music. Signing out...Shelli G., SURVIVING in AZ. Surviving the Dirty Pink Underbelly. For now...and for many years to come because if it's crap, that's how my life will go.

Cleaning for a Reason

Passing along this info:

If you know any woman currently undergoing Chemo, please pass the word to her that there is a cleaning service that provides FREE housecleaning - 1 time per month for 4 months while she is in treatment. All she has to do is sign up and have her doctor fax a note confirming the treatment. Cleaning for a Reason will have a participating maid service in her zip code area arrange for the service.

http://www.cleaningforareason.org/

Please pass this information on to bless a woman going through Breast Cancer treatment. This organization serves the entire USA and currently has 547 partners to help these women. It's our job to pass the word and let them know that there are people out there that care. Be a blessing to someone and pass this information along.

Overwhelming-Too-Much-To-Deal-With-Day

Actually, that should be "too much with which to deal"...in case Mary reads this...haha.

I can't find the papers I need, the ones I can find are a mess, I need the one from the SSDI so I can send it to the Hartford, to prove that SSDI is not paying me SSI for my child, who is NOT a minor...I know I should be working on stuff today, and I tried, but I just feel like crying today. I may go take a shower, then work on my jewelry-making and watch Eddie Izzard DVD's. I'm sliding back to my "why can't I just die" attitude. I'm going to have to drag all my buckets and of paper work over to my sister's house so she can help me get organized. She doesn't like to come over here, because it smells of cats.

My son tells me, as I'm driving him to school this morning, "oh by the way, I'm going out of town with dad this weekend"...!!! I wanted his dad to help him get his bike tires pumped, or replaced, or whatever to get it in working order. I talked to my counselor about this and decided that for starters, I'd drive him TO school, with the bike on the rack on the back of the car like I did in H.S., and make him ride it home. Weaning him in to riding both ways....which he doesn't want to do, since it is ever so slightly uphill on the way there. I'll have to get someone who can lift things to help me, and hope they just need air. I can't afford to replace tires right now; that's why I wanted dad to help him do it!!!

Some people in my situation (physically/health-wise) are so happy and chipper and thrilled to still be here. Some are going through crap I hope to never have to go near. Some are just starting out, are terrified, and sick....I'm not happy and chipper. Yesterday my counselor thought I was looking and sounding so much better...he doesn't know about days like today when I just sit here and cry and can't do a thing.

Another thing about my Support Group...I think everyone there has a husband or partner! Maybe not the one lady who also has METS who is so chipper, just retired....I don't know how she does it. Maybe she's that way at group, and cries at home. Who knows.

I have so much to do, and I am short money this month because of the SSDI / SSI mix-up, on top of the fact that my SSDI started in Jan, but not PAID until Feb, so Hardford DI only paid me $50 this month, until I can show what SSDI is actually paying me...so basically; no money in January.

I am really happy that I've been able to get back to church. That is really helping me. The first week I went, I wore myself out carrying all my stuff around using just my cane. A set of scriptures AND my backpack/purse is heavy!! So this week I swallowed my yellow-tennis-ball pride and took my walker. Hanging the books in a bag from one side and my purse on the other side made it MUCH easier, and I wasn't so exhausted after.

Maybe a shower and a methyphenedate will make me feel better. A bit better. Maybe.

Support Group Tuesday Night - computer not working

Had my Cancer Support Group tonight. I felt good about going and the meeting felt good. There were like 5 people there with METS, which was like half the attendance, and one woman who has just finished chemo and is starting radiation. I wanted to give her a bracelet that I brought, but she ran out quickly, and I was talking to another woman who has been taken OFF Femara, and she gave me three unopened bottles. Very sweet. People liked my "surviving" quest. I felt good at first , but then as it went on I kept feeling like I said the wrong thing.

What is this let-down I am feeling now though? My bad attitude is surging up and I'm not feeling positive and warm or fuzzy. Well, fuzzy in a few places, but not in that good way. I want to say/write negative things, go back to yelling "I could be dying soon!", and go out and sing karaoke in a real bar with a real sound system.

I'm feeling tired, but I was hungry; that's what got me up out of bed. Ooops, sometimes I forget that three meal a day thing. Wouldn't know it by looking at me.

I am feeling cranky about one thing that was said...and anyone who knows me, knows how I let that get me all obsessive. I want to go again next month, but I don't want to talk, or share.

Latest trip to the Lovely Oncologist

I only cried a little. I told him I am really trying to be more positive. I told him that when I get all this financial crap under control, I think I can live with the cancer. He gave me more Femara samples, which saves me a ton of money. He thanked me for a card I had sent him a while back, checking up on him. He said he ran across it the other day, and it gave him a lift. I guess a few of his patients are as intuitive as I am, and know well he cares for others, and forgets to care for him.

I wrote all over the paper on the table. I wait a long time in the exam rooms every time. I started writing {stuff} SUCKS, and drawing faces...and ended up writing scripture and song lyrics.

I meant to ask more about these illusive cancer marker numbers...but he just showed me his laptop where my numbers are...two of them are within normal range, and the one that isn't is going down slightly each time I have blood work done. That is a good sign and made him very happy. I asked him which bones have cancer. Basically probably all of them. I'll get more sore, and more tired as we go.

Was supposed to have another PET/CT scan in January, but EVDI and the insurance are still trying to work out the mistake on the code that screwed payment up for the scan in October!

I saw my counselor this week, and he was very positive about my desire to make jewelry, etc, and my ideas to promote support for metastatic cancer. A lot is still in the planning stages, i.e. how to finance it without showing income.

My sister went with me today for a consult with a lawyer. I'm going to pursue Chapter 7 bankruptcy...so I have a whole pack of papers and stuff to do. He also referred me to another colleague for help with the accident in Nov. 08 that caused the sciatic nerve issue.

I couldn't find my son when I went to pick him up from school and realized my phone was dead. I looked around for at least 40 minutes, then had to give up and go home to meet my sister who was picking me up for my consult appt. She was able to contact him from her phone and all was well. We charged my phone in her car, but his texts about his schedule changing didn't pop up until we already had him in the van. I know, he's 18, but when I can't find him, or contact him, I get frantic.

After all that I was exhausted. I lay down around 5:00pm and slept until 10:30pm. oops. Tried to go back to bed but kept getting up. 2:41 am now...that's closer to the time I can sleep.

This driving my son back and forth to school is exhausting me. The city bus doesn't run up as far as the college, which is only about 3 miles from our house. When this rain stops, we're going to talk more about him riding his bike!!

From a song...touched me...

"And I know it aches and your heart it breaks, you can only take so much...Walk on..." by U2. A friend posted it on his FB site. Maybe they already use it in conjunction with breast cancer walks and stuff, but I'd never heard it before, and I really relate...and try to take it to heart...Walk On...It's on my play list now...give it a listen.

Our high school's motto was " Carry On", spoken years ago by a student/football player who passed away in HS. It's what he told everyone before he died and it became the school motto. I'm probably telling the story wrong, but it applies today more than it did back then for "school spirit" and football.

The struggle between faith and failure...

Most days I feel like I just can't make it...I can't do it...it's too much and I cry at the drop of a hat...

But right now I'm listening to my song list...#2 ...Lyrics say "With you all things are possible..."

I need to strengthen my faith. I can overcome all my financial MESS right now, with the help of my friends and family and church I will get it worked out. OK, yeah, I am going to die...5-15 years...that's the current joke amongst my friends and family. But I have to battle this depression, which is nothing new, but worse since the cancer (METS) diagnosis, trying to do for others, look for opportunities to serve...and now Carrie Underwood is singing "Jesus Take the Wheel"...

Maybe that is the "thing" that I need to learn from this. To have more faith and put it all in the Lord's hands as he has promised we can do. It has to all work out. I didn't die in the hospital for a reason. OK, I was dead for a few minutes, though we don't know how long. Perhaps that nurse was prompted to check on me when she did, or I would have been dead...easy way out as far as paperwork goes, but I pray that the Lord will help me see what I need to do and help me find the means by which to do it.

So grateful for friends who have been so generous to me over the past 5 months. I know some of them are as depressed as I am, but they are still there with kind words and smiles, and help and trips, and fun, and ideas, and more and more help. Now it feels like Testimony Meeting...haha.

But is a battle between who I was born to be, what I was beaten down to, and now what I am struggling to regain and be the person I was born to be. There's a picture I need to find and scan.

Now "Barracuda" by Heart is playing....yeah, it's inspiring, because when I sing it at the top of my lungs I always feel better!!!!

Seriously Sick of This....

I don't want to have cancer anymore, I don't want to hear all the "survivor" crap that's out there, I just want to disappear.

Every commercial on TV is about something that depresses me either because of my current financial situation, my illness, my fears of worse illness, the knowledge that I will never be able to fix up my house, buy a new car, on and on...

My sister helped me today call one of those counseling help lines to help you apply for lower interest rates on your mortgage. Sounds like it's going to work out, but it was so depressing. They even asked if I had a room I could rent out...sure, I said, if I kick my son out! Don't they think I'd have already thought of that if I had extra space?? Don't eat out so often...dollar menu at McDonald's? Groceries for a meal cost more than that! You can't eat healthy when you're poor, you can't eat what you should to help your body fight cancer when you're poor.

I just want to know why I have to still be here!! Scan coming up...I hope it has spread wildly. Someone tell me what I had to stay here to do, and let me do it already! I really feel like I'm on the verge of losing my mind.

The New Year...2010

Who ever thought we'd get to the year 2010!! Now do we just say "in the year '10"?

I know I still owe my blog a story and update on my wonderful Disneyland trip, and possibly the last doctor appt, oh yeah, and then there's Christmas...uneventful. Christmas for me is about singing in the choir, and I'm thankful to have been able to do that. Also Disneyland at Christmastime was Magical. More on my special experiences there later.

New Year's Eve...went to a party tonight at some friends' house. Sang karaoke for hours with my Great Cousin Jim (his mother is my great Aunt, so that makes him Great Cousin, right?), who IS great, and had fun doing that. Kept my mind off other things. I was getting very down before I went over there. I'm stressing over mortgage, bills, looming need to file bankruptcy, trying to modify the mortgage through the "making home affordable" plan...it had better work. It all just brings up so much to think about. Seriously made me start thinking about dying again. 2010 might be a good year to die, but of course, since I look forward to it, and know they have less paperwork on the other side than we have here, I'm sure I'll hang around for 12 more years or so...or go insane first. It's really too much to handle, and my Disneyland Magic space of denial has just about worn off. I don't suppose wearing mouse ears and tiara every day is very socially "cool". Not that I care, but there is a point at which people start considering commitment. And I'm not talking about a relationship...haha. I really have no feelings of looking forward, fresh start, or any of that yadda yadda...I may sleep very late tomorrow.

Promise the Disneyland stories soon.


(Me at Disneyland; tiara and Bug's Life awesome 3-D glasses. I totally wanted to keep them.)