Monday, December 29, 2008

I'm Awake......I'm Angry

Midnight confessions anyone?

I am pissed out of my mind about the state of my life right now.

Right at this moment I am so SICK AND TIRED of putting a good face on it.

For those of you who would point out that I am constantly whining here already - EFFFFFFFF YOU - That WAS me putting a good face on it.

I am especially pissed about two things.

First, my family Christmas party back on the 13th. All my cousins and aunts and uncles were so good about scooping away all the little kids with their runny noses and little coughs. Everyone pointed this out to me. I thanked everyone who did it. Thank you so much for being conscientious about my compromised immune system.

It was all I could do not to cry before I got to the empty ladies room and closed the stall door.

Guess what? I like little kids. I love the attention. I am a great aunt....cousin....whatever. I always have cool stuff. My Halloweens used to be just beyond reason - I love having little kids come up and say "Look, it's Frankie's mother!" for them I would have special treats. Or back in the day "Look, it's the lifeguard!" again, there would be something cool and different. And I used to run the neighborhood 4th of July Horrible Parade. All the kids dress up in costumes and parade around the neighborhood. Before I took over the top three costumes won a prize. When I took over,everyone got something, sand pails and stuff, wiffle bats, hula hoops. And there were Hoodsies, sodas, bags of candy and over 200 helium balloons. I went WAYYYYYY over budget, but my ex had a good job and he was very indulgent of me. I did that for ten years. No one overblows a party for kids like me. Little kids used to be excited to see me on the street. I was the one who got them all sugared up and sent them home to their parents. One year I had a candy treasure hunt. I made maps of several sites in the neighborhood, got teenagers to man the sites, each with a different kind of candy that wasn't normally available in stores (there's a place in Brockton called CandyWorld-n-Mor and they have candy saucers and pixie sticks and candy buttons and candy necklaces and Nik-L-Nips). The winner was the first team back with every type of candy.

So, yeah, it doesn't sound very Princess Crabby....but I like kids and when I bring in Santa and yes, Santa is literally a personal friend and I BRING him.....those kids go crazy. And this year thanks to my entire extended family who loves me, I only got to pick up one of them when no one was looking. My cousin Nicole's daughter Kasey didn't like the present she got from Santa and I took the message. And I got to whisper in her ear that I would make sure Santa knew the deal. I didn't get to pick up Martine's son Danny, whose mother listens to WTKK so much that three year old Danny does a spot-on "I AM MICHAEL GRAHAM!".

So everyone loves me and is looking out for me. And I have been mad for two weeks. The best part? I got sick ANYWAY! Last Monday between the intense cold and the steroids, my O2 SAT dropped from a normal healthy 99-100 down to 93. Fortunately I have oxygen for those moments. But that's not the point. I should have touched every one of those kids.

Ok, so that was my first beef, my second will be much more in keeping with my personna.

Last New Year's Day, I put the PCSIP into action. I will admit, I was not always good. But I found out about the Kearsarge in early June and that set off a frantic burst of time at the gym - I was deathly afraid of being the rotten egg as we moved about on the ship. So, by the time I went to the Sunset Parade on the Constitution I. Looked. Good.

I was a little tan. I was feeling great. I was at the gym almost every night because I was trying to be in shape for the Kearsarge and it's many ladders.

I was wearing a red and white summer dress that I had specially altered to fit my perfectly. My hair was perfect. My makeup was perfect. My clutch, my shoes, my dress...all coordinated.

There was someone there who couldn't tear his eyes off me. I didn't walk around, I glided, six inches off the ground.

It was fabulous!

Right now, I am 31 pounds heavier than I was the day I was diagnosed. I am exhausted constantly. My skin is awful! My hair....there aren't words.

I know, I know, other people have it worse than me. I know that. I write it here all the time. I know that. I say it to family and friends and coworkers and doctors. And that's only a fraction of how often I say it to myself. I say it to myself as I stare at the ceiling in bed. I say when I am alone in the car. I say it in the mirror when I brush my hair. I know that. I say it in Mass when I ask God to make me less self-centered. I say it all the time.

I don't care. I am angry. Multiple myeloma didn't do this to me. Drugs did.

Multiple myeloma isn't the reason those children were scooped away from me. Revlimid is what's killing my my white blood cells.

Multiple myeloma isn't making me breathless, steroids are.

Multiple myeloma isn't keeping me awake at this moment. Drugs are.

I *had* multiple myeloma when I was standing there in my red and white sun dress in July. As a matter of fact, my IGA number was at it's highest point when I was standing there in the Charlestown Navy Yard. How-da-ya like them apples? I recently found out my very first test result from July and guess what? It was even higher than when I was in Schlossman's office at Dana Farber. Which means I was high (stage IIIA) in July, dropped for no discernible reason in August (stage IIA), went back up in September (stage IIIA) and then began chemo and dropped in November to stage IA.

I was in the gym almost every night in July and August with huge IGA numbers. I was on the Kearsarge climbing ladders and sleeping in coffins with huge IGA numbers. I went to Vegas with bigger numbers than I had on the Kearsarge. It's the drugs that fatigue me. I know, I know I have to keep taking them.


But I am pissed out of my mind.


Anonymous said...

Hey is SO OK TO BE PISSED. I can relate -- 52, divorced, two kids, living with MM for the last 4 years and being treated at DFCI by Schlossman. Everyone thinks I have such a good attitude. Right. What else can you do? But it SUCKS!

BostonMaggie said...

What do you think of Schlossman? I did not like him AT ALL, lol.
I might have caught him on a bad day.

I posted about it here.

Anonymous said...

I admit to a first impression of brusqueness (of course, he hadn't received any of the tests, etc. from my local onc), but he warmed up when I produced my file of copies and could confirm I indeed had mm! I do a lot of research, ask very pointed questions and find we work well as a team. I don't see him much (usually his NP), but the one time I called him with a possible problem he was back to me in minutes. He listened when I wanted to stop a treatment and took my recommendation to space out bisphosphonates. He helped with a referral for another condition I developed and forced them to make room for me when things got too crowded one day (I usually go first thing in the morning to avoid waits). I believe we have mutual respect for each other, which is what I want in such a relationship. I suppose he isn't everyone's cup of tea, but few people are.

Fermina Daza said...

Well, it's about damn time you got pissed. Now, what are you going to DO about it?

Anonymous said...

It's about time you get good and publicly pissed about this thing!

I've been waiting for the rant, and I'm glad to see you write it out. My Mom has scleroderma- a bad case of it. It gets worse every year. And every year she puts up with more and more pain with a smile. Just once I'd like to see her get good and pissed!

Emotion is a good thing, Maggie. It's good to mad- it makes you fight even harder. I'd say it makes you even more stubborn, but I don't think that's possible in your case! pthththththtth

Glad to hear your numbers are dropping though! That's a great sign, Maggie!

BostonMaggie said...

Hf6 & AFSis - Problem is that in this case I don't see the value in being pissed.

To my other commenter....can you make up a name, so I can address you, lol. You are describing how I felt in Schlossman's office. It was great that you had your test results, but didn't you feel so disrespected. Didn't you feel that "Hey if this is how it starts, what happens when I can't take care of my own shit?"

Do you access things through the IMF?

I feel I am able to get a lot of my own stuff and ask good questions, but if anything it makes me angrier. Who is taking care of the people who can't do this?

I ended up with Dr. Miller at Tufts-NEMC, but I have had problems there too. I feel like in this age of computers etc....they should b e able to print something out and refresh their memories right before I am seen.

But my sisters will tell you I am often unreasonable.

Anonymous said...

Actually, Schlossman was MUCH better than my original onc, who informed me of the results of the blood tests and BMB while taking two personal phone calls in his office, discussing his upcoming vacation!

I am thankful I can take care of myself (at the moment), and I echo your concern for folks who can't take care of or stand up for themselves. I know I can refuse anything and I don't blindly follow instructions. Taking the "standard care" when mm is so individual would be a big mistake.

One place I get a lot of information (from other patients and caregivers) ACOR I signed up for the mm list and although many posts are not of interest (I can delete them very easily), I have come to "know" folks and understand some of the things to expect, watch out for and am well armed with information to discuss things with the doc. From our little back and forth so far, I think you would get a lot out of it as well.

PS: I tried to send this with a google id, but not sure it went through. If it did, delete this one, else I'll try again (gee and my job is responsibility for a web site!)

BostonMaggie said...

Thanks, I signed up for the list serve at ACOR.