It’s Saturday morning. The sound of the city not quite ready to wake up yet is interesting. There are birds. At least there are birds. I’m trying so hard to think positive. Attitude determines altitude. Whether you think you can … Continue reading
Monthly Archives: July 2014
Snarky butt head man got to move to a window seat after all. I would have made him stay in his ASSIGNED seat if had been that bitchy to me after I had been as polite as the flight attendant was to him. Sarcasm isn’t always required. Sometimes polite works better.
Take off was on time and timed perfectly. The sun was pink and orange and gold on the surface of Lake Erie and it glowed silver off of the top of the Key Bank building… My now version of the fish building in Austin. I miss you angel boy.
Fog snuggles comfortably along the river banks and vallies. It is reluctant as I was to get up.
My shoes are a little snug this morning. I’m glad I had my prednisone to toss in my pills that have to go bag.
I had to rummage to find a pen to take notes with on the air sick bag. I’ve come to realize that I rely on them greatly when I fly. Not for their intended purpose. Rather as handy note paper. The restaurant napkin of the sky. I make some of my most interesting observations on air sick bags. I have them squirreled away… Loathe to part with them even after their words have been transferred for posterity.
And through the clouds I fly.
Eeyore (good grief that donkey has seen it all) is once again my travel companion. The people behind me in security thought it was awesome. Older couple who work at Disney… Eeyore and my Donald Half Marathon shirt made for companionable conversation during the wait. I realized that I bought Eeyore and customized him that last trip to Disney before I was diagnosed. That is a trip that will haunt me forever. He is a welcome reminder that even when I’m gloomy the sun keeps on rising.
So, I’m sitting on my front porch dressed in a way that would have utterly mortify my daughter a year ago. The humidity of the morning seems to have dulled most of the sound from just about every…. everything but … Continue reading
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I’m currently running on 6 plus weeks since my last orencia infusion. I’m recalling how much it sucked to be eight weeks without it. Last night it hit me hard what this time it is feeling like. I had to … Continue reading
Okay, this has to be another first for me. I’ve never actually researched a post before. They are usually just commonatry or brain dumps. This one is different. This one someone reached out to talk to me through this blog to help to raise awareness. There is some kind of weird irony in the request, I think, because she didn’t realize that she was striking so close to home for me.
First… my part of the story…
Just over a year ago (geeze, was it only that long ago?) I was having problems with pain in my back and in my hip. My rheumy said it could be RA creeping into my hips or my lower back weirding out again. She sent me for an MRI.
I hate MRIs. I hate hearing machines talking to me. Why on earth would they make a machine that you have to lay PERFECTLY still say things like ‘get up get up get up get up get up’? I mean really? How silly is that.
I went for my emergency MIR (she wanted it NOW) and within a couple days I had the result. It wasn’t RA in my hips. It wasn’t my back. It was a very large fibroid tumor. One that hadn’t been there at all a year before when I had had my back MRI. I was terrified. I went to see an OB-GYN as soon as I possibly could and had my total hysterectomy scheduled.
As soon as I found out what was going on (and as soon as I heard the fear in my Rheumy’s voice) I did what I do (I did what I yell at my daughter for doing) I googled about fast growing fibroid tumors. I found out that it COULD be leiomyosarcoma. And as soon as I found out what it could be I was terrified. RA can shorten your life span. Cancer is still a scary word. I know that people survive cancer every day. My mom survived breast cancer and has racked up enough years that she is considered to be a survivor. 🙂 My mom is a survivor. My bestie has survived fighting cancer not once but several times and is currenlty in remission. But Aunt Bea and Aunt Flop didn’t make it. Sonny didn’t make it. People still don’t make it. And I was terrified.
I had my hysterectomy. I have the tiny little scars as reminders. It was a TOTAL hysterectomy. They took everything. And they had to fight hard to take everything. There was, apparently, considerable scaring from my appendectomy decades ago. The OB-GYN had to work hard to clean up the mess from my fibroid tumor and from the scarring. Bear sat and waited for the surgery to be over. He waited through the time they said it would take. It took twice as long. When Dr Fitzpatrick finally came out to talk to him, he said that the tumor was big enough that we could have/should have named it.
They took it out, and sent it off, all in one piece. They didn’t use the Power Morcellator to cut it up. They said that it was an option, but the doctor didn’t like the machine and he felt there were risks associated with it that were worth taking. They DID do the surgery laproscopically but they took the turmor out whole. It came back benign.
I’ve never really talked an awful lot about my hysterectomy. It’s a woman thing and I don’t think a single person at work knew why I was out for surgery. I heard so much about the back surgery of one of my coworkers that it made me want to scream. I work in IT. It’s a man’s world and talking about woman problems still feel very taboo. I didn’t realize at the time how many woman have hysterectomies.
I do know that I went through menopause in 5 hours. I had hot flashes SEVERELY for months and I ended up taking hormone replacement therapy for a few months to help with sleeping and getting by day to day. It was worth the increased chance of cancer (thank you RA biologics for THAT) to feel human. I’m off of them now. There is life after menopause. There is life after hysterectomy.
An aside… it also meant being off humera for too long and as a result I’m not on orencia because humera decided it wasn’t going to work for my post hysterectomy.
Now, as the power morcellator is facing FDA hearings on whether or not it should continue to be used, I’m thinking about the what-ifs of my hysterectomy.
The power morcellator is a device that is often used in hysterectomies to cut the tumor into small pieces to make it more easily removed. The problem that has arisin is that leiomyosarcoma doesn’t usually come with a flasing neon sign telling you that the tumor is malignant. The presence of cancer cells can go unnoticed. In this aggressive cancer, if the malignant cells aren’t all removed from the woman’s body, they can spread the cancer through the patient’s body. morcellation of the tumor, if it is malignant, can accidentally set cancer cells free in the body to attach and grow again. The average life span of a woman after this accidental morcellation of the malignancy is 24-36 months. Only approximately 15% of women who have leiomyosarcoma that spread (stage 4 leiomyosarcoma) make it to the magic 5 year survivor milestone.
Hysterectomies are the second most common surgery among women in the United States. Amongh women age 70 one in three women would have had a hysterectomy, and ninety percent of these would have been done to remove fibroid tumors. Most commonly (as in my case) the tumors turn out to be benign and non-cancerous.
I’ve been reading new articles about the power morcellator. It seems that women feel that they are not made aware enough of the potential situations that can arise. I know that, when I was facing my surgery (when I’ve faced nearly every surgery I’ve ever faced) I am terrified. I do read the papers I’m given and I do read the warnings of what could happen. Because I wasn’t looking at having the power morcellator used in my surgery, I didn’t see that warning paper so I can’t speak to whether or not it was worded in such a way that people really understood the challenges and the chances of something happening.
But people are scared when they are facing surgery. People (I can’t be alone here) already believe that the worst possible outcome could happen. There are so many alternatives to taking the chance. I hope that women (or the people who are the support system for the women) who are facing this surgery will at the very least do their research and find out exactly what is going on… and what could be going on.
While the FDA is looking at the evidence (and even once this crisis… this scare… this set of circumstances has passed) I encourage you to read carefully. Do your research. Find out what is being suggested to be used on your body and do some digging. I know it is easy to fall into the fear of what could happen, but if you temper OH MY GOD this could happen to me with BUT it probably won’t and face the tools that are going to be used on your body with an informed mind, you can make more informed decisions on the choices that you face.
Dr Fitzpatrick took this decision out of my hands for me. He wasn’t willing to take the risk. But you need to understand what could happen and decide for yourself. I know you can’t know what you can’t find information on, but arming yourself the best that you can is the best defence.
I’m not a doctor. I’m not even fabulous at advocacy, really, unless it has to do with my kids… then I’m kind of viscious. But I can use my words to try to raise awareness… to try to help people to find information and educate themselves.
If you would like to have more information on the Power Morcellator, you can find more at the American Recall Center.
Remember, this is just my story and I’m just me… but you can never have too much information on which to base any medical decision.
So, I’ve been sitting in the growing gloom of morning as the storms creep in feeling very alone and very cut off from everything and everyone in the world. Given that my dog is at my feet and everyone I live with are where they usually are (squirrel girl asleep on the dining room floor and bear asleep on the basement couch) the feeling is in no way based in reality.
The rain has interrupted the satellite signal so the only sound is the rain on the roof and the windows and the patio and that lends itself to the feeling.
I’ve discovered when I’m aching more the moods are far worse than they are when I’m not. I am way more short tempered and moody (crying to anger to crying to feeling contrite) and physically exhausted when the pain and stiffness creep up.
It’s a lot like the the storm, the thunder and lighting and rain… the anger, frustration, anger and tears… they come in, sometimes blow through rather quickly, sometimes stay for days. Eventually it blows through.
And I feel so guilty because of it. I know it hurts people’s feelings. I know the way that hurts, too.
I’m looking so much forward to my twice put off infusion on Wednesday to blow out the cobwebs, the aches, and the moodiness.
This is the evolution of me. I’ve been thinking a lot about it this week.
I had a wonderful week off (exhausting, but good) with my son visiting in from Texas. He’s been quiet this week and I miss him. A mom worries even when her babies aren’t babies and it was so nice to talk to him just a week ago today.
Earlier this week, when I pulled into the parking lot for work, there was one of the massive ore freighters coming in the Cuyahoga river. The only sound she made as she eased through the water was a very low hum. She was graceful and huge and it made me smile. I remember the freighters in Duluth. I remember the pellet trains (and blowing up dirt) in Minnesota. I remember the parting words that someone gave me as I left the plant (and the company) in Minnesota.
He told me that some day I would look back and think what if. And during my walks to work, up the hill from parking… this week (15 years later) I really started to think about the what ifs.
I know what he meant. He meant with regret. And I have regrets in my life. However, I don’t look back on the last 15 years and the adventures I’ve had or that I’m having, necessarily, with regret.
I’m sitting at a desk I adore in a house I finally feel at home in listening to the sounds of everything and nothing stream through the open windows. I’ve tried to drink from my empty coffee cup about four times now. I sat on the porch a while and watched the sun creep up through the trees. I have a job I enjoy with people who I’m finally a team with.
If I hadn’t left US Steel, I would never have had the opportunity to learn so many of the things I’ve learned. I would not have made my way to Texas and met the people who I met (and some of whom I miss) there. I would not have seen what I’ve seen and I would never ever have been where I am right now.
Am I wear I pictured myself 15 years ago? Nope. Not even close. My goals have changed. My drive has changed. My outlook has changed. I’ve grown (in many ways) and I’ve stretched my wings far further than even I ever dreamed possible. My Brazilian business visa is in process and I’m starting to find my voice and my strengths and weaknesses and learn my way navigating my new(ish) job.
I have evolved.
Do I miss my kid? Yeah, an awful lot some days. Do I completely understand why he is in Texas and I’m in Ohio? Yep, completely. I wish Ohio and Texas were closer. I wish I could make life easier for both of my babies and that neither of them would have to be going through some of the stuff they go through. And I sit and drink my coffee and think about where I am and what I do and the lives that have touched mine and I smile (and try again to drink from my empty coffee cup… there has to be a metaphor there somewhere).
This weekend I’m tired. I’m tired, breathing sucks this morning, and I ache and I feel every bit of the two weeks late on my orencia infusion… and I’m SO looking forward to Wednesday when I can get my next obscenely expensive fix.
Has it been a week of thinking about what ifs? Yep. It sure has. But my Blue Jay is back and I’ve scared the piggy little squirrel out of my feeder again this morning. And I hear the hickory nuts thudding to the ground where the stupid squirrels are either harvesting them or knocking them down.
I am exactly where I am supposed to be today.
And just for shits and giggles, I googled the guy who told me I would look back and think what if. The meteoric rise to power that he foresaw in his own future I guess has come to pass. He’s in slovokia now. I wonder if his ex-wife and his cute kids and dog are happy back in their home town without him. He seems (if the company press releases are anything to go by) to have become a smashing success. And I guess I do wonder where I would be had I not left my first grown up job 15 years ago. And I’m PRETTY sure I don’t think I would have liked where I would have been.
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It’s late again (for me). Later than it should be. Later than it could be. And this morning I just don’t care. I am sitting on the front porch. My deer friend Eloise (I’ve named her Eloise… the one that … Continue reading
I’m sitting here earlyish (Technically way too late for me to be sitting here writing, but I’ve been kind of resting when I need to be resting) with the windows wide open. Stephen King is speaking to me from the Bachman Book “Roadwork” through the computer speakers. The cat is stalking the birds and squirrels through the open window. Squirrel girl is sleeping quietly on the floor a few feet away. Monkey Butt is snoring softly in the living room (he never did sleep in his room). It’s Butler Fair day.
I’m wrapped in my wool hooded shawl and my fingerless gloves warming my fingers. It’s 54 degrees and the damp chill is making my fingers ache.
It’s been a wonderful week. I’ve got pictures, and hugs, and memories of all of us together to hold me through the next few months until my little boy comes back to visit again. Maybe next time he will bring his partner with him.
In a couple days I go back to worrying and touching base with him every couple days, if not every day. I worry about the dough machine eating parts of him. I worry about him taking his pills or not taking his pills. I worry about narrow minded people jumping him when he walks in the dark. I’m the mom. I worry.
It has been an amazingly wonderful week. Peaceful if a little busy and planned. And I’m feeling it. I’ve slept way more than I would like to have slept. I’ve taken migraine pills for the first time in a few months. I’ve taken more achey breaky pills than I like and I’ve been using my Voltaren Gel a little more like hand cream (liberally) than like achey cream.
I’m also running (again) on approaching 5 weeks on my 4 week infusions. I’m thinking that I’m probably going to keep up the five weeks to save a little on bills towards the end of the year… and because there is every chance that I’m going to be in Brazil for week four next time. It seems like there is always something that comes up when I’m supposed to get my infusion. Something that is more important and that gets in the way. Last time it was Ecuador. This time it was Adam. Next time it will be Brazil. I think as long as I keep being able to stave off the aches with a couple Napproxin and some Voltaren, I will not push too much to keep the four week schedule that it’s supposed to be.
This week I have realized that “they” are right (whoever they are) about stress being stress and good stress having an impact on your body the same as bad stress does. By the end of the day (and they have been fun and wonderful days) my body reminds me kind of loudly that I shouldn’t forget that I have RA and I need to save some spoons. I’ve been borrowing on spoons for the next couple weeks. I’m going to need to catch up. And I will.
It’s been so much worth taking the extra naps and sleeping in past when I’m usually up writing. I’ve been remembering that sometimes there are more important things to take the time to do other than just keeping on keeping on.
And Sunday morning is coming way too fast.