Friday, October 28, 2011

Doctor Bully & Exhaustion

I don't think so Doc!

We've been sticking up for ourselves since we were little, getting pushed around on the play ground. Why do things change as we get older? I am sitting here blogging looking at an outpatient survey that I got in the mail from the hospital. I have filled them out before, honestly and returned them. 
Today is a little different.  

Today I made the phone call to gather my troops. I did what all patients MUST do when they feel that things are just not right. I don't feel good!  My body is telling me that something is wrong. Yes, I may be NED. That's fantastic....but, I don't feel right.  It may be that I have been pumped with more drugs to balance me out. My poor body and my brain is so tired. 
What's even better, the hospital gave me the wrong medication dosage to take daily! You have to love the local ER!

Was the last head-pain-trauma-ache from lack of steroids or brain swelling?  I want an answer. I want an MRI.  I am not waiting until November 14th to see the Dr. I will get this done sooner. This is my life, I am NED and will stay NED! 

Why the heck did my Neurologist put me on anti-headache migraine meds (when I clearly stated NO). Why did I let him?? Because, now when I said I don't want to be on them.... I have to wait. I may get a seizure. What? I have never had a seizure! Why the heck would I get one now! What is going on! I am a Fu**in guinea pig to some of these doctors! 

Today an email went out to my Neurosurgeon, My Head and Neck Surgeon, Radiologist...maybe even my Dentist. I want everyone to figure me out! Get me a scan. Find the problem. I will not sit around and wait for another in the middle of the night attack. 

I am already seeing my vision getting know what happens next. 

Be your own Advocate! Speak your mind to your doctors. Don't be scared. Tell them how you feel and if one can't help you....find one that will. 

Now my anger has turned to sobbing tears. I am letting this take over my life again. I thought getting passed this summer would be  great. I started to dance again. I got my eyebrows re-tattooed. Yes, I lost one during radiation a few years ago. It was so traumatic for me. 28 years old and one eyebrow. Sounds silly, but you really don't understand that our face says it all. For a head and Neck Patient, Survivor, we struggle with our appearance. Scars are more visible than those on a breast or belly. I have them running down both sides of my ears, neck. My port scar, the 10 inch beauty on my stomach. Beautiful reminders....battle wounds! Red burn looking marks on my forehead and eye (bloodshot) from treatment. Bumps, pins and screws sticking out from surgery. 
I'm crying because yet again I am at a standstill. I am cancer free and still weighed down by this horrible disease. It just lingers in the air. 

I don't want to be tired anymore. 


Anonymous said...

Michelle, It sucks that you still aren't feeling well despite your "cancer free" diagnosis. I'm so sorry.
Good for you for taking a stance and demanding some answers.
Love you....

The Astonishing FartMan said...

I'm so sorry. And I do know exactly what you are saying. It's so hard to deal with this doctoring stuff on top of being sick at the same time. I've had some similar problems with my doctors, too. I thought it was my RESPOSIBILITY to keep my doctors informed about my symptoms. But sometimes they basically tell me I should stop complaining and just be thankful to be alive. Well, I AM thankful to be alive, probably a lot more thankful to be alive than THEY are, since I've had the experience of balancing on the edge of the gravestone, and they haven't. But, selfish me, I want to be alive AND to feel halfway decent at the same time, so that I can enjoy being alive. And I do still enjoy being alive, no matter what, but it is a real challenge to enjoy it if you feel like dogpoo and are worried that something is going to explode somewhere.

Well, hang in there girl. And really do try to be diplomatic with your doctors, even when they don't deserve it. (I had one quit on me, in the middle of a medical crisis, because he didn't appreciate me raising questions about some things he was doing, and things he was forgetting to do. I guess maybe he just didn't like my personality, which is understandable when you consider some of the mind-altering (and body altering) drugs I've been on.

Hang in there. Try not to get to frustrated. And remember that there are some "perfect strangers" out there who are thinking about you, thinking about Michelle on Long Island!

Sjn said...

I'm thinking about you, Michelle on LI... praying for your health. NED is not a promise, is it? I never feel at ease with that. I still feel like the follow up routine will go on and who knows what the next scan will show. If I could go NED for a year, maybe then I'll start to feel like it's true.
I do know and see that head and neck patients have it bad. Your treatment effects so much of what runs our body. Get those meds balanced. Try to feel good and do a little bit to make you feel productive and "normal". Maybe day by day you will start to feel better.
I have my post surgery/radiation follow up scan on Monday... we'll see next week what lurks beneath.

Anonymous said...

You go girl! I'm proud of your pro-active self. I love you and keep us updated.

The Astonishing FartMan said...

Slurp, sleep, slurp, sleep, same difference. I need some slurp, too. (That will leave people scratching their heads.)

Thanks for the kind wishes you left for me on my blog. You are soooo funny. But don't worry too much about me. I'm mean and tough, so I can deal with it.

Yes, they think they got all my tumors during the liver surgery in January, but there were some tiny little "indeterminate" spots that they weren't sure about: maybe cancer, maybe just little cysts. If they were cancer, the chemo kept them down, but now that I've been off chemo for a while, we'll be able to tell whether they've grown like tumors do or have sat there quietly like polite little cysts.

I started a new drug this morning, Lyrica for my CIPN ("chemo induced peripheral neuropathy") in place of the gabapentin that wasn't working all that well. Don't you love the names they come up with for these drugs!?!? Will Lyrica make me "lyrical"? I dunno. But in addition to helping with the CIPN pain, they say it will also have the side benefit of improving my attitude. (That's probably the real reason my new onc was happy to switch me to it!)

My best to Paul.