HearMeRoar

Hi, HearMeRoar! I am catching up on some old WhatNext e-mails. Do you still have your cough? How are you? Thinking of you.

You are the first person I have come across that has the same diagnosis as I. Can we talk about your treatment options and how you decided?

I saw where you got back to me, but I can't figure out how to get back there!

You don't deserve to have fear control your life. You do deserve answers about what is causing you distress. It could be anything..don't let this anxiety spoil your holidays. GO find out!

Hi girl. Thinking of you. Sending hugs your way.

He's a good man. I told him I needed more than a pat down and a blood test every six months. He can't be any more than that for me. He doesn't know anyone in St. Louis who can... hmmmmm...

I hope that you don't get mad at me, but if I said that, you'd tell me that I'm one patient out of a 100-more or less. That a doctor has only so much that he/she can give to their patients. Doctors become drained, depressed and have a high suicide rate. Patients wanting more than what a doctor can give, is part of their problem.

Doctors that give more usually have affairs with patients, get sued, lose their practices, lose their intimate partners, lose their minds and lives.

We become very emotional and dependent on people that save our lives, but doctors aren't dependent on us. Isn't it enough that he gave you life? That's his specialty, and sometimes it doesn't work out that way for him.

This isn't the story of a fireman that saves a baby in an odd accident and brings the baby back to life, and the family adopts the fireman, and he becomes like an uncle to the baby. This is the story of a doctor that saved his patient, as he saves the lives of hundreds of other patients-a specialist that does only one thing- cancer. If anything else comes up, the patient is referred to another specialist, like a neurologist, an ENT, an endocrinologist, a pain specialist--

Please think about how lucky you are that you have lab work and a pat down only twice a year. You don't want to be a needy patient that consumes the energy of a doctor. That's a loser for every one. You don't want to start office gossip that could cause your doctor legal and staff problems.

Right now my doctors are stressed out with the new insurance rules, and the new Medicare and Medicaid rules and regs. have you heard of IDC 10? That stands for International Diagnosis Codes- year 2010. The new insurance rules said that all doctors and clinics had to begin using this now. They bought software that doesn't work. They had to hire or train people how to use this code. It was developed by WHO, World Health Organization, They had to buy special computers to use for this. Do you know what happened? Obama decided that it was a hardship to require doctors to spend this millions of dollars, but doctors that already invested must use IDC 10. This is a great financial burden on the doctors-the fines can be about a million. My ENT is loosing his shirt because he followed the law.

I'm in remission, but my cancer is nose/mouth. I got lots of sinus infections that ate holes in the surgery areas, and a sinus was bleeding. I went in. my ENT examined me. He developed a regime to try to control this, and he contacted my main oncologist to see if he had any ideas on how to help me. We went to check out-and he thought and said, "IDC 10-education visit." Then he slumped. I said- that means you get paid almost nothing for this- He nodded.

What he told me to do is working- the bleeding got worse, but the meds, saline nose rinses, medicated nose rinses are working. The bleeding stopped in about 2 weeks. I waited a week, and called and Emailed the office to let them know the meds worked. I asked if we should cancel the appointment, so they can let somebody else in that really needs to be seen sooner.

I appreciate my doctors. I appreciate that they work together. I really appreciate they answer my questions, even if the answers don't make me happy. They are my doctors and they are giving me a good life. I have a good relationship with the head nurses.

Shoot, just realized you did not have mastectomy did you?

Hey girl!! Was just wondering how you are still feeling after your DIEP. Am going to see my PS the end of this month and am collecting all my questions for him. Have already had my CT scans and he says I am a good candidate. He specializes in DIEP and does like 3 a week, he also has a great way about him. I won't be having the surgery until about October (am still doing rads) but am writing my questions now for end of April.
Did you have skin sparing surgery after your mastectomy? I did and this PS says he may not be able to use the skin after all. It will be too bad cause they are a real bother.
Hope all is well, and thanks for any info you may give me!

Thank you Hear Me Roar for taking the time to respond. I will be 55 in July and the babies you see in my profile are my grandchildren. My beautiful family is what I live for. I lost my dad 2 1/2 yrs ago to cancer which devastated me and have lost both his sisters to breast cancer. In a couple of weeks i will also have some skin cancer removed, my second go around. I refuse to let any of this destroy my spirit. Continue to roar loud!

What do you put in your green smoothies?

What a GREAT way to bring enthusiasm and courage to those who come after you. So selfless, do not be surprised if you see others following in your footsteps. I just finished my six treatments of Chemo...and the girl in me would have loved to clang that bell and kick the devil in the rear and swirl around and say I DIDIT!!
Thanks You so much for sharing and congratulations!

What I'M doing is really unpopular with my family, friends and other Docs. I can't find many patients either stupid enough or brave enough to tell the Oncologists to just go away.
I wrote a song about the very stiff resistance and headwinds against doing this. People try and scare, ridicule or just say I'm going to kill myself and I'm a loon.
The is called
"DON'T RAIN ON MY PARADE"
I don't know if Not doing the mainstream treatments will kill me but at least I'll die healthier. Check out the song and others at barrydbutler channel on youtube.
Glad to be on the same wavelength as you as it Really Lonely out here at the edge of the branch.

http://www.youtube.com/watch?v=3BkFvVEZydo

Barry bdbutler@centurylink.net

Good morning....You had said you were able to work full time...How long after surgery were you able to go back to work?

HMR, I have recently been taken off Femara... possibly switching to another AI. Pain in knees, ankles, back, etc. It ages you. My back seems to be curving downward as we speak. Without your ovaries and the hormones secreted what will happen? Please find another doctor if you don't trust your oncologist. I find that a second opinion, usually that of my PCP, puts things in perspective.

Hope you had a very Merry Christmas! Are you as exhausted as I am? Today needs to be a day of rest! Now is when I can tell I had a major surgery, even 7 weeks ago. Part of it might be the many trips of carrying everything in from the car. I try so hard to limit the weight of each trip! You still healing okay?

So glad you are doing well. Coughs and sneezes are really bad for awhile! Remember to rest and not overdo. My chiropractor told me to take naps for 3 months to help my body heal. Not always a possibility, but I make it happen a few times a week. Of course, I have 25 more years on my body. You are still so young!
You may find that the healing areas shift on how they feel, hardness and soreness. Perfectly normal. Hugs to you!

I was diagnosed in September. Our story is very similar! Your attitude and courage is inspiring. Wishing you a healthy future!

hi... just read how u found out you had cancer, and that scares the crap out of me! I have been told that I have a lump that's probably not malignant but to be safe, need to get another mammo..which I did. They said still looked ok but get a digital one and as of now, I have not done so. I actually came to this site because I am sitting in my husband's hospital room looking for support for caregivers. He has throat cancer, stage 2 or 3. He just had throat surgery and they have put a feeding tube in his stomach for radiation and chemo treatments. Now I am thinking maybe it is fate that I came upon your story. I think I will go get another mammo here at Rush hospital. We are from a couple of hours away and are staying here in Chicago thanks to the IMD guest housing at IUC at Chicago.

Hello! I was reading your blog post (wonderful!!!) and I saw that you were told it was 99% nothing. I just had a biopsy in May and it came back 98% NOT cancer... I'm obviously concerned. I was wondering if you wouldn't mind talking to me about your experience? Thanks!

Hey HMR mama--you're just a KID! Loved the "you Tarzan, me Jane" pic!

Good luck w/your, HMR---but watch out for Dilaudid--it still seems ridiculous that the docs missed my drug interaction, but that's why you have to be your own advocate. BTW, the RN who checked me out yesterday said I looked "PHENOMENAL"! Ha ha!

DIEP Flap: Still looking kind of like 'Bride of Frankenstein', but I have a couple of nice mounds on my chest. I think you have made a good decision for your reconstruction.

Love the tree-swinging pic. I went up in a hot air balloon and then zip-lining before my surgery. Love to be outside! I'll even miss shoveling snow off the driveway this year.
MLT

thanks for the quick answer, HearMeRoar!

Hey HMR - I went to hear a cancer nutritionist last night at a local cancer support group www.hopeconnectionsforcancer.org/‎
They have great programs. (BTW, this is in response to your post to some one where you mentioned going vegan.)

The nutritionist they had last night (fully certified and associated with Johns Hopkins) mentioned the newest studies coming out are saying that Coffee is good for you - 2 cups a day; As good as tea when it comes to the anti-oxidants. I was surprised, frankly.
She also mentioned new studies (and her info was coming from studies done in 2011, 12 and 13) indicate the thinking on soy products has changed.Probably because researchers now recognizing that the rodent digestive process differs from the human process. She recommended this website because it is reliable and up to date - the American Inst for Cancer Research.
http://www.aicr.org/

Hope all is well with you - I am feeling the effects of the AI I will be taking for at least 5 yrs. Even though I've been on it less than 6 months, I getting to feel like an old lady. Even though I will be 75 this coming spring, I have never felt old, or felt that I moved like an old person. So is it the drug? Or is it the age??

Not going to obsess on that one - I'm just gonna leave my messy place, and get out of here and DO something. You keep well. Your answers on this forum are so very helpful and on point. I'm spending less time on WN I notice. I think that's a healthy sign.

Thank you for your response to cumulative chemo question, I am getting Cytoxan and Taxotere. I am halfway through with 3 rounds down. It has been pretty Ok so far and keep expecting to feel much worse. There are a few bad days but all in all OK

HearMeRoar, thank you for voting my response "the best"! Best, Carol

Thought you might be interested in this.
http://bcaction.org/wp-content/uploads/2012/02/2012-Think-Before-You-Pink-Toolkit.pdf

I noticed that you and your family and friends donated a celebration bell to your cancer center. My parents are wanting to donate a bell in my honor to the cancer center in my hometown. Can you tell me where you got it?

Hi your post about the bells prompted me to go to your pages - and I actually looked at your pictures. There is one of your nails and you ask about possibly losing them.

Reader alert: this is incredibly detailed (I feel stupid writing this all out) and incredibly disgusting. But you did ask, right?

I was on CT. and my fingernails were horrible for a while. Onc said I wouldn't lose them, and I didn't. But the white part at the tip went down almost a third of the way on some nails - I thought it was separating from the nail bed, but I don't know. I got depressions (little valleys) on some nails. And when I went to my dermatologist (non cancer-related) he took pictures of the thin white horizontal lines running across some of my nails. Also the underside of my nails (where you clean out the dirt if you've been digging) - they were difficult to clean and they felt very rough and gritty - like sandpaper. I also had very thin black vertical lines going about 1/4-1/3 of the way down some nails from the tip. That's it for fingernails.

Toenails - another story. I lost one on my big toe maybe 4 months AFTER I finished TC at the end of Jan 2013.. And now the big toe nail on my other foot is looking the same. The white part is larger than it should be - looks like separating from the bed? There seems to be a little "cut" in it, so I keep a small band aid over it so sheets, socks or whatever wont "catch" on it and rip it off.

Apologies - and please don't report me to the authorities. Now I have other things to think about.

I've been wondering, how are your nails doing now?