Monday, October 31, 2011

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.

Tuesday, October 25, 2011

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.

Wednesday, October 12, 2011

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'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 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 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'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."

Friday, October 7, 2011

"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