Thar She Blows...

I had a root canal today. After consultations with three different branches of dentistry, I finally got it done. The hold-up, of course, being the fact that, thanks to bisphosponate treatment, I am at high risk for ONJ (osteonecrosis of the jaw).

[Y'know what, Spell-Check? If you don't have a suggestion, stop red-lining me; I'll spell it any way I please!]

I calmed myself in the face of the root canal with the promise of nitrous oxide. Laughing Gas. I've had such pleasant experiences with it in the past, that I was actually looking forward to an hour or so of blissful deep space out-of-body floating. I thought this may well be my first moments truly pain-free in over 2 yrs! I remember feet and hands disappearing in the past, which would mean no leg aches and peripheral neuropathy in my feet for a little while.

It started out okay, and I asked the assistant to turn it up a little. I could feel myself starting to float...

Then the nausea hit me. I've never had that happen before. Deep breaths, off came the nitrous mask (luckily the doctor hadn't actually started yet) and try though I did to suppress it, I spewed. Not just a little in my mouth, but projectile vomiting. I think I hit the wall. Seriously, I saw a girl wiping it. Several heaves into a trashcan later, I was a mess, and so, apparently, was the room. Two assistants helped wipe me up and I made my way to the restroom, holding onto walls.

I hate throwing up. I hate throwing up in the privacy of my own home. I hate it so much, that when I was a child, I really think I talked myself out of it. This was SO embarrassing. Being half-high on nitrous at the time only made it slightly less embarrassing. It was mostly water, so luckily it didn't SMELL like puke, or I didn't notice that it did, at any rate. But I made a mess for people to clean up and I wasn't in control. This may have been worse than poo-ing on the floor in the hospital (twice), since, at least the hospital room wasn't carpeted, and they have a janitorial staff on hand.

I had to have a little more water to get the bitter taste out of my throat, and I worried that this would make me nauseous again. The assistant turned the nitrous back down a bit, and then I started stressing that I wasn't going to get any effect at all.

Then everything got spinney. In through the nose, out through the mouth, I hoped to get past the spinney. I got upset that I had a) thrown up, and b) may not be getting the full nitrous experience I had so been looking forward to.

In through the nose, hold it a bit...

To my annoyance, I then began to rehearse in my head how I would blog this once I got home.

Deep breath...

The assistants in the back office space were chattering away like 14-yr-olds. How was this breaking through my wall of nitrous? I only wanted to hear the doctor's voice, that point I was approaching when my stomach objected.

Finally, I started relaxing; hands and feet relaxed, legs relaxed. I was blocking out everything but the doctor. I felt close to a snooze, but knew they would wake me if I actually did nod off on nitrous.

After what felt like a mere five minutes of this blissful state, the doctor was finished.

The procedure was over.

They took away my mask and left me to breathe regular air, and come down from my high. I felt rather cheated out of my full blissful experience, and angry that I had thrown up. Spewed. Painted the wall. Tomorrow I have to call the other dentist to make an appointment for the permanent filling. I'm afraid to ask for nitrous, yet I hate dental procedures without it. I can't even take the Novocaine shots until I'm a little under the influence.

I came home tired, physically and emotionally. I wanted to lie down. I got comfy and started to nod off a bit and, BAM...RLS ruins the nap again. Something has got to be done about this foot and leg thing. I threw down the gauntlet at Femara on Friday, and removed it all from my pill sorter. No more. On to something else, worse I am sure, as I think that Faslodex shots are next, but I cannot do this achy, jumpy legs and tingly feet thing anymore. I know, I am blaming a lot on Femara, but my legs, my feet and my SLEEP were all getting better over the few months I was on Aromasin, then a month and a half back on Femara and I am losing my mind!

It hit me the other day that all "THIS" was for keeps. It isn't a treatment to get through, and then recover from. I started feeling down, then impatient, then frustrated, then grumpy. I don't want to push myself when I don't feel like doing something. I don't want to feel worse after the pushing anymore. I don't want to put myself through unpleasant things. I don't want side effects from meds that are worse than the disease. Time for a heart to heart with the doctor, I guess.

And the Month Drags On...

I don't watch TV, so I am spared most of the crap commercials about pink ribbon products assuaging pink guilt. I'm spared reporting on the Walks and the Runs full of decked out revelers who apparently thought breast cancer was a Mardi Gras event, but wound up wearing all pink.

I marvel at the fabulous writers out there this year, putting the real information on the table; Sarah, Rachel, Gayle, Nancy (to mention just a few) and feel that the cause of realistic honesty is in good hands as I try to share and paste it around Facebook. And yet, when it comes to sharing anything face to face, when it comes to trying to educate anyone in my own circle, not even about the big picture, but just about my little corner of it, I feel inadequate, marginally successful and tired. I do not make a very good activist, as I am wiped out by tired and cranky when the month is only 3/4 over.

I go to bed with swollen, itchy, prickly feet and ankles. I awake 5 or 6 hrs later to very little improvement. I wake up at 4 to use the restroom, then can't seem to go back to sleep. Though I am tired, because of my feet and ankles, because of the crossword game I played on my phone before falling asleep, which is now encouraging my brain to try to arrange words in a lattice even though the game is turned off, because of the damn cat who follows me back in my room and begins to cry at me for some ridiculously selfish reason, whom I must then get up and chase out of the room with a pillow, scaring the non-offending cat in the process and suddenly the bed no longer feels comfy and welcoming, I am up and at the computer at 5 am. That may be familiar to some people. It's not comfortable for me.

It's also not any cooler outside, even at this hour, than it is in my house. The weather here in the Phoenix Valley this October has left me CRANKY. Waking at 5 is a much different prospect if one can throw open the windows and doors and enjoy a cool, if not nippy, breeze. Waking at 5 to a day that will likely reach the 90's and the living room feeling stuffy just leaves me feeling scritchy around the edges. And cranky.

Between the pinkness and the lack of Autumn-ness, this October has left me feeling CRANKY. What can be said about cranky? I am ticked off when climbing back in bed in the pre-dawn hours is fruitless. I feel pointless when I hope others will understand the difference between side-effects and laziness. I am let down when I open the door in the dark and I am not hit by a chilly breeze. I'd settle for cooler than indoors even.

To add insult, the A/C just kicked on.

In the dead of summer, the A/C feels cool and refreshing. In October, it feels mocking and artificial.

Oncologist visit coming up in a little over a week. I should call and ask to do my blood work ahead of time. (I usually do it day of, and then call for results after, but with my CEA on the rise and my unhappiness with being back on Femara, a trip in before my appointment seems prudent.) Femara's side effects are not being "well-tolerated" by me this time around. Maybe my fault for the break to try Aromasin, but the pain and swelling are more than I am willing to live with right now. I'm not willing to try walking gingerly on feet that feel like I just walked a 1/2 marathon (1/4 marathon: let's not exaggerate my abilities here, present or past) when all I've done are a few simple chores and a couple of errands. I guess that makes me a bad candidate for Xeloda, which I'm sure is in the bull pen, warming up, just waiting for its shot at me. I'm sure I'll end up being offered it, when the hormonals all fail. I don't know if I could take it. As much as my feet bother me now, I fear that Xeloda would reduce my mobility to trips to the restroom.

I know it's probably time for a scan. That's not in the budget until January and Medicare. I'm sure the doctor will understand, unless one of the tumor marker numbers has shot up like a three-yr-old singing "Jesus wants me for a sun-BEAM", in which case he'll have to be unhappy with me for two months.

Still not light out, and the temp, which is not bad, though I gripe, will only continue to rise from here throughout the day, so opening that door again, hoping for a waft of fall to hit me in the face and make me feel good about being up this early would just be an exercise in futility.

Kind of like trying to educate those closest to me about my illness that shows no outward signs and for which my treatment is not yet toxic. Ironic that I must get sicker for them to begin to understand.

Maybe a cold shower will make the morning crisper...if not my mood.

The Numbers

By Danny Welch, Dallas, TX
Shared by Marcie Garside

"When talking about Stage IV, I sometimes think we should just tell the

audience "just give me a number...somewhere between 1 and 2,400,000

people." Not a bigger number than that...just the number since 9/11 that

have died of metastatic breast cancer in the US. You want a bigger

number? One for the whole world? Nobody knows. You want the number

for those with Stage IV metastatic breast cancer now in the world? Pick

a number...nobody knows.

How about this...it's easier. How many people (mostly women) in the

entire world have had breast cancer? Don't know? Nobody else really

does either. Pick a number. It's a lot bigger than the 2,400,000 in

the last 10 years.

How many became metastatic?

Whatever number you came up with earlier, bump it up by 30%. That's the

number we know...the 30%..that's your metastatic number.

After all the best efforts of medical science, 30% become stage IV.

Those are the cases that are the failures. Lights out. Case closed. 

These patients cost a lot. They consume a butt-load of bucks.

It's not that they die...that's too easy. No, they languish. They take

their families down with them. Husbands, kids, grandchildren...I wish

the damage was ONLY financial. Money is the easy thing...and I'm not

talking about health care dollars.

Breast cancer intends to destroy you for generations...it has no limits.

The impact on the children and the surviving spouses is felt for YEARS

to come.

And what is significant about all this? Not the money. Not the years

of medical tests/work/treatment, the agony.

It’s the "number".

And is it too much effort? What do you think? Is it "my god why don't

we just let them all die? Die and get it over with." Would it surprise

you to know almost everybody who is Stage 4 MBC has already heard that

argument? They've heard it in spades.

If you don't want to hear about that number and the arguments, you're

wrong. You're wrong not because of the 2,400,000 and the 30% and the

blah blah. You're wrong because you missed the ONLY IMPORTANT NUMBERE

in the whole breast cancer discussion...

It's 1.

1 is a shocking number when it's your mama and you're a little boy in

first grade who is only 6. And your mama is the one.

1 is the look in your wife's eyes when she's had the stage 4 diagnosis

from the beginning. She's the one.

1 is the patient's name who is called by the infusion nurse and you know

it's your time...time to put down your magazine, leave the waiting room

and get a toxic drug you hope will keep you alive for maybe 30 days but

will make you deathly sick for the next 3 or 4 days.

1 is the next week, where...if you are lucky enough...you get to do the

same g_d damn thing.

1 is the week you get to live between oncologist visits hoping ANY new

drug can be pulled out of the hat to get you to next week ! And

sometimes the oncologist wants to talk in their office...which is the

worst of all.

1 is when the hospice person comes to your home, and tries to help you

be comfortable while your kids are running around trying to have some

kind of "normal life." You're the person in the hospital bed in your

living room. You’re the one.

1 is the casket at the funeral home...just 1 casket, with a pretty

taffeta lining, and holding a very nicely dressed and repaired body

weighing only 85 pounds.

1 is when it's you.

1 is...when it's made up of 2,400,000 individual "ONE" patients plus

innumerable patients who still have the disease and are battling it now,

plus all the thousands who we don't even know about...because they

weren't counted, but they fought and died just the same.

Breast cancer is not a numbers game...it's not stage 0,1,2,3A, 3B and 4

and stop there.

It's just 1.

Millions of American women and their families will experience the

significance of 1.

1 must be respected. And the disease must stop."

"Bras for A Cause"

Okay, we went to the event! I have to say that we headed down with a protest mind-set. Kristan Landry actually met with the station personality, Mathew Blades, of Mix 96.9, who hosted/created the event, during the week, and he invited her to come down to the event today for the Forum / interview portion of what he was doing.

She gave him an earful this week, and he took it all graciously. She gave him one my 'not a ribbon' knots, and when we arrived, we saw it attached to the mic cord that was set up in the booth.  He told us afterward that a lot of what she had discussed with him affected the direction he took and the questions he asked during the forum (with an MDAnderson doctor, a TV personality who has had BC and another woman with BC) portion. I thought he did well, directed the comments and discussion in a real and educational direction, and I was impressed after meeting him that indeed his heart is in the right place when it comes to trying to educate and not just titillate.

Kristan and Mathew Blades

In addition to the huge wall of bras display, which was more like a giant flag made of bras, strung up by (vocab recall issue...) those tall truck thingies that reach high places, they had a Mobile Mammography unit on site, and had 24 un/under-insured women signed up to receive mammograms.

Wall of Bras?

Kristan and the guy from Sojourner Center

The 'buck per bra' pledge by local car dealership owner Larry Miller, which amounted to a $5,000 check, was donated, in full, to a local women's shelter organization, the largest in the country, Sojourner Center in Phoenix. All of the bras, estimated at over 2500, some new and some gently worn, will be professionally laundered and also donated to Sojourner Center.

After learning about the recipient of the donations, meeting Matthew and hearing that he really does care about the truth of the breast cancer story, I felt quite good about attending. I gave Matthew my Dirty Pink T-shirt, on which I spent hours last night writing quotes from all of you wonderful voices in the blog-o-sphere and cancer voice community with a Sharpie.

Me with Mathew Blades

Sure, the giant pink under-wire bra is still obnoxious, though not far off from my actual size. I did get a good shot of Kristan in front of it. The wall of bras was visible from the freeway. I feel that over all, Mathew accomplished educational awareness over boobie awareness, and donation to a worthy cause.

Kristan, shaking her head at the giant pink bra

Of course, we left before the after-work crowd came by, so it may still get more pink festering, I mean festive, as the day goes on.

All in all, this Dirty Pink Critic of the fluffy pink culture has to say, "Good Job, Mathew Blades". While I don't condone the use of titillation to attract attention, he didn't even stand on stage and say "boobies", and I do believe that the results of this event were a good thing. 

Kristan and Me

My Cold Hard Truth

I have a few things on my mind that I'd like to vocalize. Er, uh, type, for the benefit of those closest to me, who ironically will probably not read this anyway. 

1. I STILL have Stage IV Metastatic Breast Cancer. And it's STILL incurable.

Okay, I put you all through that whole  thing in the hospital right after that diagnosis, and I'm sorry for that, but the diagnosis stands!

No, I was not, at any point during the past 2 years, "in remission". Sorry to fool you all with the months of seeming functionality. Sorry for having hair and fooling you all by not looking like I have cancer.

I'm still here at the 2 year mark. The length of time I have lived with this disease is in no way a signifier of how much longer I will be able to do so. There's no magical magnifier formula adding months or years to my life for every month or year I manage to live with cancer.

2. The Tables can Turn Quickly.

I did well this past year. Tumor markers were relatively stable. Scans were good. No spread was found.

My tumor markers, however, specifically the CEA, have risen over the the past few months.

This is not a good trend. It could be from my stint on Aromasin, trying to avoid the monthly weight gain of Femara, or it could be an increase in activity because the Cancer Cell Committee (The CCC) inside my body voted that it was time to get moving again, regardless of aromatase inhibitors.

Just because the hormonals have worked for two years doesn't mean they will keep on working for another two years. Hormone blockers are the first line of defense where bone metastasis is concerned. Eventually, they will fail, meaning that eventually the cancer will again start to spread. Then it's on to the next one. I have a couple of hormonal options left if my return to Femara is unable to bring that number back in line. When the last of those fails, then it's on to the "Hard Stuff"...chemotherapy.

Then we run through those until they all fail and there's nothing left to try.

The cascading failure of treatments can begin without warning, with no relevance to how many months or years for which they worked.

Don't file me in the "doing fine" compartment in your mind because I have done relatively well for a while.

3. I DO need help, and will need MORE as time goes by. Don't judge me.

I openly admit to never having been an organized, tidy person. I was never an organized, tidy child. I wish to say to my family that it hurts my feelings that this is seen as a defect. It's who I am, and how my brain works. We can't all be Martha Stewart, no matter how much we admire organization.

That being said, working full time plus commute while trying to fit in everything else that goes along with being a single parent made any attempts at Martha-dome even more difficult for me.

I know my (extended) family just sees me as a lazy slob, and judges me as such.

I know that now I am home, all day, every day. I think that in the eyes of my (extended) family, I now have all the time I need to whip this place into picture-perfect shape.

Yes, I have time.

What I don't have are physical energy and pain-free stamina. Oh, and money.

It hurts my feelings that because I was never able to keep up with keeping  house then, my family assumes that I therefore do not need / deserve / merit any help in doing so now.

The backward and illogical idea that a woman with one child and no husband somehow needs less help than a woman with four children and a husband is insulting and hurtful. Sure, no one says that out loud, but the fruits of that thinking are manifest in my community and family.

That this same woman with one child and no husband is now living on 50-60% of her previous income, with mounting doctor bills that will not end due to the cancer that will end her life still does not need the same help offered to a healthy married person is ludicrous.

It hurts my feelings that, rather than help out a little, even 15 minutes a week, my own mother and siblings avoid my house.

It hurts my feelings that my mother bends over backward to help one sister, and shuffles me to the back of the line.

I don't want to sound ungrateful, however, and would like to acknowledge the generosity of my other sister, who thinks of me when she has extra food, and who unselfishly gave me her fabulous white fridge when she upgraded to all stainless in her kitchen.

I don't think any of them read my blog, but just in case, I do appreciate her generosity.

4. Don't look at me like I'm fat and should or can do something about it.

Yes, I am fat. I have struggled with my weight since puberty, constantly through my 30's and increasingly so in my 40's.

Then in my early 40's, I started this cancer ride. Now at 47, that cancer is not going away; the treatment for which, and limitations therefrom now make it pretty much impossible to avoid gaining more weight, let alone lose any.

My feelings were very hurt by the implicated suggestion from my own mother yesterday that I should be getting out and walking. This as I am struggling through a shopping excursion through Walmart, leaning on the cart, gritting my teeth through increasing pain and fatigue.

Stop blaming my weight on lack of exercise. Stop blaming my weight for my pain and lack of stamina. Maybe that was true five or six years ago, but now it serves no purpose, and is not entirely accurate.

I have a tooth I have wanted to have pulled for the longest time. The crown was ill-fitting and it bothers me all the time. Currently I have a cracked tooth that also requires a root canal and crown.

Since I have been treated with bisphosphonates for cancer on my bones, I am at HIGH risk for the development of osteonecrosis of the jaw (ONJ) should I have any dental surgery or trauma to my jaw bone. Necrosis means death. Dead bone. No resurrection possible. To me, this would be worse than the cancer itself.

So any teeth with which I am displeased, I am unfortunately now stuck. If my teeth start to shift because the Wisdom teeth I never had removed decide to start changing position, TOO BAD. I am stuck. I cannot have a tooth pulled.

PC (pre-cancer), I would have said, if this cracked tooth is cracked and moving because the Wisdom tooth is pushing on it, let's pull this cracked tooth and let the Wisdom tooth and neighboring molar go ahead and shift, and try to fill in the space. It would be a simpler extraction than the impacted Wisdom tooth, and be cheaper than a root canal and crown. 

Thanks to cancer treatment, I no longer have that option.

I have the same teeth I had before cancer, but I had different options for them, before cancer.

I have the same body composition that I had before cancer, but I had different options for it, before cancer.

Don't judge me for my body composition, any more than you would judge me for my dental shortcomings.  I'm stuck with both at this point, thanks to this cancer.

5. Yep, Metastatic Breast Cancer is still aiming to kill me.

I know I was obsessed with death shortly after my diagnosis. I talked flippantly about dying quite a bit. I lost social invitations as a result of that phase of my coping.

That's what it was - my way of coping and coming to terms with the prognosis attached to my diagnosis. The prognosis nondetachable from my diagnosis. 

I don't talk about it a lot now, like I did at first. I know that makes people around me more comfortable, but that's not why I stopped talking about it. 

Talking about it was a part of ME being able to accept and be at peace with it. If I was annoying because of it, I apologize. If it made you uncomfortable, too bad. Too frickin' bad. I'm not here to make others more comfortable with MY CONDITION by sugar-coating it or keeping it to myself. 

I do my best, however, to get to church on Sundays and serve and participate. Don't be fooled if I look good. I still have this cancer that is not getting better, even under make-up and a good hair day. 

I have a realistic acceptance of my prognosis now. If that makes you uncomfortable, if you judge me as negative, or silently accuse me of not having a positive attitude, I will cut you out of my circle first, before I try to fake what makes others feel more comfortable.

On the other hand, sorry to keep looking so deceptively capable most Sundays, and not dragging myself around on Sundays looking like I'm on death's doorstep. On Mondays, I recuperate from Sundays. Sunday is my big spurt of what energy I can muster. I drag around the rest of the week. But I still have no desire to actively work at eliciting sympathy, patience or understanding.

I'm not on death's doorstep, but I am on the sidewalk that leads up from the street to that doorstep, and there really isn't space for a U-turn.  I won't talk about it every time you see me, but don't mistake that for me being "OKAY". 

I shouldn't have to remind you that I DO still have cancer, and it WILL eventually kill me.

And while we're on that vein, I HATE the BUS analogy...how any of us could die tomorrow being hit by a the Mythical Bus. Yes, we are all dying...literally progressing toward death from the moment we are born. Some of us will live to a ripe and probably annoying old age. Some of us will be cut short. MOST of us will not have the advanced warning that the bus has turned onto our street and is gunning for us, whilst we become increasingly unable to jump out of the way, and despite the increasing money spent on that new crosswalk and reflective tape. 

To that end, the next one of you who gives me that damn bus scenario will be flipped off and kicked in the shin. 

I swear I will do it. 

Don't push me on this one.

Ode to a Denim Skirt

Oh my favorite skirt
Denim, frayed and well-worn
Ah the times I threw you on
To find comfort and a loose-fitting waistband


The way you hung low on my waist
I recall a day when you nearly pulled off my hips
without the aide of the zipper


But such sorrow
Fresh from the laundry
Where hast thy roominess gone?
Cutting into my waist when I sit is unacceptable


Curse you, aromatase inhibitor! 
Starving the cancer cells
While feeding my fat cells...


Curse you, cancer!
Now I can't wear 
my comfy
Denim
Skirt

"You're depressed," said flippantly and matter-of-factly, in hasty response to my admission that nothing interests me...

"You're depressed."

Well, I'm not crying all the time anymore...

"You're depressed."

I take an SNRI...

"You're depressed."

Smugly said, with an air of one who knows all, but is above all.

Rudely thrown out there in front of my peers, as if the declaration would suddenly give me drive and make my hobbies and past interests seem important again.

Arrogantly announced as if it were obvious to all but me.

I wish my answer could have been less defensive. 

I wish I didn't feel the need to defend my state of mind to someone who isn't in metastatic limbo land.

I function. Most days I get dressed. Most days I don't cry. I keep my doctor appointments and I take my medication and treatments.

I have a disease that will kill me. Maybe in six months. Maybe in six years. (Unless, of course, I explode first from the weight gain caused by the meds keeping the disease reined in.) 

Nothing seems important...in comparison to the fact that - regardless of my attitude, my frame of mind, or whether or not I eat enough fresh fruits and vegetables - this disease will get progressively worse, progressively more painful, and that the treatments will therefore get progressively worse, progressively more painful. 

Making jewelry, crochet and crossword puzzles seem insignificant next to having a child to finish raising, and a life to justify,  all in the probably-not-too-distant future.

Was I where I wanted to be at 30? No, so I reassessed and made changes. Was I where I wanted to be at 40? No, so I reassessed and made changes.

Am I where I want to be at 47? Hell no. I don't want to have metastatic cancer. So what am I going to do about it? 

Reassess? I'll still have this cancer.

Make changes? I'll still have this cancer.

No amount of passion to a hobby, interest in a cause, or desire to reinvent myself will change the fact that I have this cancer, and can't do a thing about it. 

Depressed? Yeah, probably so, (bitch), but I'm not going to trade it for a happy face-full of denial, so you can keep your met-with-me-a-few-times-in-group-setting brilliant diagnoses to yourself, unless you can find a more productive way of bringing it into the conversation. You're the one with letters after your name. You should know how.

I get dressed most days, and don't cry every night. 

All things considered, I think I'm doing pretty damn well.

Rut. Gorge. Ravine.

I can't put my mind's finger on the word I want, but I've been dragging along the bottom of something. I am unsure of what to write here, as per usual.

Perhaps just an update is in order. 1/2 a month on Aromasin after 5 wks off Femara. Some edema in my ankles and lower legs, mostly at night. And is it my imagination or is my FACE HAIRIER this week?? Not that anyone cares, or cares to be close enough to my face anymore to care that it is growing a (thankfully) blond goatee...but it grosses me out. 

The whiskers, the double chins and the wrinkles all gross me out, on my own face.

I feel bulkier. I felt not so bulky during my 5 week hiatus from Femara. Unfortunately, the rise in my CEA tumor marker (to an all-time high) was unacceptable. I guess I have to accept the bulk. I still have increased lower back and hip pain as well, which could be the Aromasin, could be the Aredia, and could be lesions acting up again. Really, I don't care which, as long as I can still walk and don't break any bones.

Perhaps the indecision regarding blog topics coincides with my feelings about the newly-formed Metastatic BC Support Group at the hospital. We have had three meetings now. I leave hoping that something soon will 'click'. I have been in contact with another member, and she shared that she leaves feeling frustrated. 

I asked her to give it one more month, and I am determined to somehow bring in the next meeting a discussion of what we want the group to be. I am not over my don't-care-for attitude toward the facilitator, and I am not sure that we CAN mold this into OUR group, into what WE need. I feel frustrated as well. I feel committed, as I wrote previously, to attending, to support the existence of the group, and my doctor's commitment to be there and be the medical liaison. If it weren't for him, I think I would give up on the group more easily. 

How do we quietly and with dignity wrangle control of the direction and content of the group? What do want from this group?

Validation Realism Acceptance 

What do we want NOT to be a part of the group? Criticism, Avoidance, Ignorance, Patronization, Marginalization, Platitudes. I don't want to hear that I should exercise and eat fresh fruits. I know this. It won't cure my cancer. Trying to lose weight now, in combat with the aromatase inhibitors trying to pack it on, when I have had trouble losing it without that against me, is not what I get dressed and drive to the meeting for. It's insulting. 

Is the facilitator committed to making this work? Or would she rather see us give up and not come, thereby making HER right about not having a separate group for metastatic. There are those who cannot attend because of work, and we got the day slot. Those will continue to attend the BC Support group, at night. If they could, I think they would attend the Metastatic Support group. 

I don't want her to WIN! I don't want her to GET HER WAY! I feel we need to show up at the next meeting with visual aides, or write our words on the white-board. I would like to hold up a picture of the stupid food pyramid with a big international symbol for IX-NAY through it when she gets off onto what we feel is not beneficial or relevant, things that we feel are downright insulting. 

I feel we have to something, and that it has to be obvious, and that it has to be well-thought-out. If we are to say we don't like something, we need to back that up with what we LIKE and WANT. We need an uncensored mission statement.  

We need some good Haiku. 

Oh I hope we can come up with something. I'm glad I see my doctor before the next meeting. I hope he has a couple of minutes to discuss it with me. This issue is weighing on my mind, and I feel I need to DO something about this. 

Comments and suggestions are welcome.

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!

 

Monday, Monday...

 

{da, da, da-da, da-da...}  

I hate Mondays. I realized this with a lethargic vengeance today.  

Sundays are exhausting, but they at least have a routine, a purpose. I know it will be hard to get up on Mondays, because, I'm not joking; Sundays are exhausting. Lately, however, my sleep schedule has shifted a few hours to the right again. I don't go to sleep until after 1:00am, but I still sleep 10 or so hours. Not entirely true - I awoke at 9:30am. I think I fed a cat, and a chicken. I didn't feel terribly sleepy, but there was nothing grabbing my attention, persuading me to stay up and get involved. So I lay back down and slept another three hours. Of DEEP sleep. I wake up barely remembering what I did at 9:30am, and irritated by a bad dream I had about spending 6 hours in a tire shop, getting nothing accomplished, and having my credit card taken away. 

Mondays are the beginning of another long week of What The Hell Should I Do With Myself. No motivation. No interest. Not entirely true - I'm quite interested in food, although when I get up (finally) I don't normally eat immediately. This is probably why I'm hungry again at midnight, thus fueling my shifted sleep schedule. I digress. Nothing is interesting, nothing is motivating, the house is still a mess. I don't want to clean it. At midnight or 1:00am, feeling guilty over another week of doing nothing, I think, in detail, of the things I want to get done the next day, the next week. When I wake up at 9:30am, I have no energy, or desire, to move the bed and vacuum the floor and hang up that pile of clothes that I'm not sure I will ever wear again. And at that hour, or should I say, at that point in the shifted sleep schedule, I don't even feel the pull of food.  

When I say food, I, of course, don't mean anything readily available in the kitchen. My interest in food is anything I don't have to make, that is bad for me, and available at many various establishments for which one must put on clothes and use a car to patronize. 

And this brings us to the two things that keep me from eating out all day long, every day: MONEY, of which I have NONE, and that discouraging road block of getting dressed and leaving the house. 

Other than that, I really should go to the library today and get another bag full of books. That whole getting dressed and using a vehicle thing keeps me at home, again, with a growling stomach, yesterday's hair clipped up on my head and a dirty house.

Why can't I find a way to make the line spacing more readable? And to get back to Mondays...the start of another long week, of doing nothing, and having no purpose. I have to say, that having a healthy, capable, unemployed 20 yr old in the bedroom doing nothing all day, every day, adds to my discontent. I think I would feel less useless if he were more productive and useful and contributing to society and life and growing up. I hate summer because it is so dang hot, but I also cannot wait for school to start again, so I can have the house to myself during the day. So I can have the dirty house to my unmotivated, uninterested, lethargic, pathetic self. 

The cats don't judge.

Guest Blog Link from Alicia C. Staley

 
Komen's Wild Ride
 by Alicia C. Staley

Dear Susan G. Komen for the Cure:

Stop. Just stop. I've reached the point where I'm embarrassed by you and all your branding efforts for the cure. I see tons of pink ribbons, plastered on everything from shampoo to lawn mowers and cat litter.  I'm beyond aware.  I'm frustrated.  I can no longer justify your breast cancer awareness campaigns to my friends that want to know why there's no cure.  I've received more emails in the past week over at Awesome Cancer Survivor expressing exasperation at the breast cancer community than I care to count.  As a breast cancer survivor, I shouldn't have to justify your behaviors. 

When you launched your partnership with Kentucky Fried Chicken  (aka "Buckets for the Cure"), I excused your lapse of judgment.  I assumed it was a temporary slip, and you'd eventually focus your energies back on partnerships and alliances that aligned more closely with your stated goal of "For the Cure."  You trumpeted the partnership, declaring KFC would make the largest one time donation of an estimated $8 million to Komen. The ultimate goal of the $8 million donation never materialized.  According to your own reports, you only took in $4.2 million.  Not pocket change by any stretch of the imagination, but only about half of what you were looking to grab. You are the self-proclaimed leader of the breast cancer community.  Where is your leadership? 

When you went after the little guys, suing everyone and anything using the phrase "for the cure", I lost all respect for you.  You attacked the very people that are desperately seeking a cure and trying to find some solace in the face of this devastating disease.  Instead of reaching out your hand to help lift these groups up, you smacked them down with frivolous lawsuits.  Exactly how is "Grandmas for the Cure" hurting your multi-million dollar campaign and branding efforts? These small charities, working for a cure, picked up the baton you dropped long ago.  You are the self-proclaimed leader of the breast cancer community.  Where is your leadership?  Where is your compassion?

When you launched a perfume, I realized your days as a leading breast cancer charity were dwindling.  A perfume named "Promise Me?"  Why?  Do you know that chemical sensitivities are heightened while undergoing chemotherapy?  To this day, almost 18 years after my last chemo, I still have trouble with certain smells and tastes.  I can't imagine the thought of wearing a perfume that reminds me, everyday, of the lack of progress made in the fight against breast cancer.  Were you expecting every woman fighting breast cancer to spritz on some "Promise Me" before heading out to the cancer center?  You are the self-proclaimed leader of the breast cancer community.  Where is your leadership?  Where is your compassion? Where is your creativity?

And now this: Roller Coasters for the Cure.  Did someone run this one by corporate? A Komen affiliate has co-opted the pink ribbon to plaster on a roller coaster ride.  According to the press release: "Wild Waves challenges all U.S. theme parks to paint their Skycoasters pink to raise awareness for breast cancer." Save the paint. Remind me again - for what exactly are you raising awareness?  We're all aware.  It's time to move beyond awareness.  You are the self-proclaimed leader of the breast cancer community.  Where is your leadership?  Where is your compassion? Where is your creativity? Where is your self-respect?

The backlash is here.  The Komen Bandits are organizing.  Count me in as a bandit. I'll carry the torch for Joan, Jeannie, Susan, Martha, Mary, Karen, and Lisa.  These women were dear friends that died from metastatic breast cancer.  I'm asking you to take a leadership role in addressing the lack of progress made for those facing the metastatic aspects of this disease.  The once mighty Pink Ribbon, used all these years to herald the importance of breast cancer awareness, is quickly becoming the poster child for cause marketing overload.  Don't make this your legacy and drag the rest of the breast cancer community down with you.

You've done a great job of making us all aware of breast cancer.  Please take those next steps to help those that continue to suffer.  Leaders don't rest on their laurels.  They keep moving, they keep innovating. They don't go back and rehash the same products and promotions over and over again.  We get it: You could sell a pink ribbon popsicle to a woman in white gloves.  But, please know, your days of King of the Mountain won't last long if you don't address the groundswell of criticism directed at you.  Wake up, the bandits are coming.  And we're not happy.

Promise me that metastatic disease will become a priority for your organization.

Promise me that you'll visit the nearest cancer center and sit with those women going through treatment right now.  It's not a pretty sight.  Frustration is alive and well there, if not much anything else.

Promise me that you'll remember why you started this fight in the first place.

Promise me that you'll take these next steps or get out of the way.

 

I really want to edit that pink ribbon OUT of my blog banner...I can't believe it is still there...I think it became invisible to me. BUT, I can't find the file that I kept that stuff in so that I can edit. I haven't done anything like that in quiet some time, as, well, nothing interests me. A whole different topic.

I will find the file.  

I will remove the ribbon. 

I will purge the pink. 

...Wow. I found it. I did it. I rock. I rule this page. And it didn't take me a week to figure out how I did it before!

Supporting Those Coming in and Honoring those Going Out

 

It's the club no one wants to join. It's more like the Mob in that the only way out becomes death. Like the Boy Scouts, as we try to always be prepared. And the girl scouts, as we all love cookies...

I attended the first official meeting of the Metastatic Breast Cancer Support Group at my local hospital. I did not do as I wanted to in taking flowers to set seats for 2 local club members who have recently passed. I did bring up their names, and shared that the Lisa R. had wanted such a group for a long time, so it was a triumph for her as well.

I learned that I never want to go first in introducing around the table, or comment on much until every has been introduced. I put my foot in my mouth, and hope it didn't scare or hurt the feelings of a very new club member, who had just come up from the minors to be with us. She has my same doctor, and her recent diagnosis I'm sure had much more to do with him jumping on the Facilitator to provide this group than did my occasional bitching about it. She, though, is exactly why this group needed to be. She attended the Breast Cancer Support Group meetings, and was brave enough to strike out with the Un-Cured and attend this new meeting.

I've felt guilty all week about my verbal misstep, and am still debating on waiting to see them all again, or writing someone a letter. My dear sweet KNOWLEDGEABLE doctor is co-facilitating. I knew I should have taken paper on which to keep notes, as he gave several good-to-know tidbits of information. Next time I certainly will have notebook in hand.

The woman with the new diagnosis has three young children. The woman who sat next to me has two young children. I have one children, but he is not young. He is technically an adult, but not grown up and on his own and independent yet.

My main point of issue right now is the financial battle to stay insured and pay for treatment, while still feeding us at home...somehow. I have a lot of help with my insurance premiums, and while making it to Medicare has been my holy grail, things will still not be perfectly manageable then either.

I left the group feeling rather depressed. Mostly because of my misspeak, I think. But what I really feel, as far as me and this group (the facilitator asked me in the hall after as we were leaving if the group was what I needed, or something. I put my arm around the Rookie and said that yes, it needed to be here especially for her.) is that I need to be there at this one, even when it's not just for myself. This is something I feel I can support just to be supportive. Down the line, I am sure that when I need more support, I will find it there.

So that's the thing. I, personally, do not feel the need for the group. But I strongly feel that the group needs to BE. Personally, I cut that facilitator and her support groups OUT of my life and sought (and found) support online. I needed a group like that in the beginning, when I would stay up nights trying to find info on the internet. I needed that group when I was searching for support. Instead, I found Inspire.Com, and the women there ARE my support group. Because of this Cutting-Out I did, it was hard to go back. But because my doctor is involved, and because I want the group to solidify and stay in place for those who are searching, for those who have recently gotten their diagnosis. For them, it needs to be a soft place of understanding, support, and thanks to my doctor, information. 

So even if I do not feel, as of yet, that I need to be there for ME, I do feel I need to there for the others, to make the group attended and relevant. 

The day after the group, I read online that one of the bloggers I followed, Sarah, with Stage IV ovarian cancer, had passed away. I sobbed and sobbed. She has young children and a husband. Sarah blogged at The Carcinista, and she was witty and a great writer. She was still out going places within the past month, I believe. Another blogger, Ann, at Breast Cancer? But Doctor... I hate pink! posted a tribute to Sarah with a link to an article Sarah had written for her this past October on Pinktober from a Teal Point of View. 

Just a couple of days later, this morning, I found that my dear friend, Barbie from Inspire.com had passed away. A couple of months ago, she went on a vacation. We talked before her vacation, but hadn't spoken after she got home. I found out from another dear friend, Mary, that Barbie was ill but being taken good care of and was surrounded by her family. Mary printed and mailed off our well-wishes to her, as she wasn't up to using the computer. The news came through Mary this morning that Barbie had passed away in the night. Barbie had been very involved and hosted a stop-over of the The Pink Pedal group, who were biking cross-country to raise money for BC research last year. Barbie shared my snark, and we enjoyed our 'side-bars' of discussion of the discussions on Inspire.com.

I feel guilty when I cry and complain about my stable, though by no means pain-free, bone metastasis. I feel guilty when I speak easily of death in front of people who, while they may not fear it, certainly want to put it off for as long as they can to raise their children. I don't know if I should go to the support group next month mourning Sarah and Barbie. I think I should always be there, as it is something I believe in, even if I don't believe too much in the facilitator. It is hard to have a group, when someone like me doesn't feel certain that I will put myself through much of it at all, when that time comes, where we want to keep the balance supportive and encouraging for the women with families. They can fight this for as long as their bodies can stand the treatments. That's usually how it ends up. Someone either runs out of treatment options, or their body just can't take it any longer. But I know that these ladies, like my dear friend Annette, will put themselves through everything offered to have more time to raise those children. I hope that our Rookie's 2 nodules in her lungs either turn out to be not cancer, or are easily beaten down. Working forward with bone only, her chances of keeping it at bay for a long time are very good.

So today I remember and honor Debbie, Lisa, Sarah and Barbie. I pray for their families, and know that the ladies are resting pain-free in paradise.

And today I pledge my support to the group, and to the people there giving it their best.

Support for the East Valley

When I visited my doctor in March, I mentioned to him the death of Debbie Z. from the hospital's breast cancer support group. Debbie had metastatic cancer, and was one of those with metastatic disease relegated to the support group for all of breast cancer-dom, with no regard to the differences in Stages 1-3 and Stage 4. I wondered aloud to him how the facilitator would have handled this in group, and expressed to him how angry I was still with her for her refusal to acknowledge that a mixed group was not serving the needs of all. I told him of being accused in group of playing "Cancer Olympics" and the feeling that anything Stage 4-ish got the 'shush' in group. 

Yes, this is the facilitator with whom I  butted heads over the wording under my painting last spring. Same facilitator with whom another friend with metastatic cancer, Lisa, (whom I met on Inspire, but never in person, though we were patients at the same medical center) butted heads over the need for metastatic support and separate groups, and then simply gave up and went to a more distant and less convenient place for support. Lisa passed away metastatic breast cancer just a few months ago as well.

When I told my doctor how mets was 'shushed' in the group, he was upset and said "that's not right", and that he was going to have a talk with that facilitator.

I had forgotten all about our conversation until I saw him this month, and he said that by the way, there was a new support group starting for metastatic cancer! And he said it was thanks to me. He will attend the first meeting, coming up the first week in May, and act as a medical liaison of sorts to the group. Of course, tears sprang to my eyes. I will of course attend faithfully. I hope it goes well. I hope it is for all metastatic cancers, ie, ovarian, etc, and not just breast. I won't know until I go, as this is all the info I got from him.

I want to ask all my friends here and at Inspire to give me some thoughts and ideas to take with me to the group, as to WHY it is important to have a group for metastatic cancer, and not just combine it with all stages of breast cancer. I fear being the only person at the first meeting, and want to be armed and prepared.

I also think I will take a rose, one for Debbie Z. and one for Lisa R., and place them each on a chair with a name card. I hope this will emphasize the differences between breast cancer and metastatic cancer, and what we face that those in early stage breast cancer don't need to face on a monthly basis. 

Fatty Liver? What a surprise...

Visited with the doctor this past week. The results of my PET/CT were fine. It pointed out a few active spots, possibly a new one on my left scapula. But still fine. They pointed out a spot in the right abdominal area with unusual SUV (yes, the spot I had already seen), but could not tell from the PET/CT if it was foci or vascular. Doctor suggested an MRI to determine.

My MRI came back clean. Doctor said you rarely see such a healthy liver in one with metastatic breast cancer. Slightly elongated, and fatty. Really. With my body type, I fully expected my liver to be svelte and slender. Uh-huh.

But no spot of concern. Doctor was thrilled. CEA slightly trending up again, but not enough, with good scans, to want to change medication.

Why does Stable feel Anticlimactic?

 

I did indeed finally speak to someone at the oncologist office Friday afternoon, and she gave me lame excuses as to why my scan had not yet been reviewed by my doctor, and then put the responsibility back on me to always call if I haven't heard on a scan in 2 days.

My dear, hardworking doctor called me the next morning, on a Saturday. Overall, the report said the scan looked good, and pronounced the bone mets stable. He said he would really like to sit down with one of the radiologists and have a personal look at the actual scan and be shown what is what. I really REALLY hope he does that.

This time, they noticed that spot I mentioned. I told the doctor that it was on the last scan as well, but they apparently had not noticed it then. They could not, from the PET/CT, say whether it was vascular or foci. My doctor asked if I would like to leave it and watch it, or do an MRI to find out. I agreed to an MRI, if we do it before the end of the month (when my COBRA expires).

Why does waiting for that result put us through so much stress and strain? Like someone said, it is what it is, and I can accept whatever the outcome, I really can. It's the waiting that makes us crazy. This week's ordeal makes me say "no more" to the scans, no more to the vague ambiguous reports from radiologists I never meet face to face. Until walking becomes nearly impossible, or pain becomes unbearable, or a tumor marker skyrockets, I say no more routine scans.

I do feel that this fiasco of a communications breakdown is the fault of the office staff and their system. I don't blame my doctor. My scan result floating around, waiting for his review, however, is unacceptable. I fell through the cracks, as was my fear. I felt forgotten, and I hate that feeling.

 

Every Stupid Scan

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

Today is Friday. I have no results.

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

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

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

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

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

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

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

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

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

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

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

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

 .