Oops! I did it again . . .

Like missbutterfly, I will be having an MRI on Monday and don't think it will be good. Like butterfly, I should have been scanned about 5 months ago when I complained of numbness in my chin. Was sent to several rounds of dentists and a facial pain specialist before the onc would take me seriously. They brushed me off - which happens to Stage IV girls from time to time, but the facial pain specialist said the CT and x-ray they had done were not enough. She wants to see inside my head (scary . . .) So now, I'm just waiting for the other shoe to fall . . .

In the meantime, I now have a new primary tumor in the left breast and they're brushing me off again because it's grade one and not fast growing. (yeah, but it's in MY BOOB and I want it treated NOW!)

My sister has decided that she will be my caretaker because we tend to get our caretaking skills from our mothers, thus, hubby is not skilled, but can't help it. We will be kicking some serious butt this week because I see the doc on Thursday after MRI, CT, and bone scan - plus the bloodwork they did a week ago. What a mess! Prayers please!

I've created a CaringBridge site for myself because I've finally decided to get real specific with friends, family, and co-workers via the web and don't want to say it more than once. My site is www.caringbridge.org/visit/margaretadams

I called Hospice this week to see what they have to offer in the way of palliative care because I'm going nuts! Hopefully, I'll hear from them soon.

Love to you ladies,
Margaret

By Groovygirlcool
Posted August 29, 2009 at 9:11 am
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darling Margaret,

I've visited your 'caringbridge' site - great photo - you look fabulous, even if you don't feel it right now!

SO glad to read you and your sister are "serious butt kickers" when it comes to advocating for your health-health care-life!!

Only today, I gave my 7 & 9 year old daughters a mini-history lesson (lecture!) on women's liberation (equal pay-equal rights); the advent of social security for single parents; the emergence of affordable jet travel in the early seventies;the contraceptive pill, and how this impacted on women's lives and lifestyles.

This was all because they asked me why I had kids after 35, and just how many countries I travelled to in my late teens and twenties, and about running my own business for 12 years.

After initial diagnosis, if I hadn't spoken up for my self, I would have received pointless and harmful adjuvant chemotherapy and radiation, and not had extensive bone mets diagnosed until a break happened or worse. Only now 3.5 years later do I have daily pain (from skull mets).

I really believe we have to take the onus on ourselves for the quality of our healthcare. Many a time, I've double checked or asked about procedures to find 'medical professionals' not so professional or competent.

So, after that rant...'star' on the forehead to your facial pain specialist and a BIG kick up the bum to your Onco! Hopefully "several rounds of dentists" will begin subscribing to, AND reading their professional journals - mine does, I'm very impressed with him and SO happy to have found him.

More power to you Girl and YOUR boob, and get what YOU need - even if you have to bang a few 'professional' heads together (whilst kickin' butt)!!

Prayers galore for you, xxxGGC

By Beachbabe
Posted August 29, 2009 at 12:14 pm
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I'm having a 'sick day' but have so many things rolling around my head.

Sending love and hugs and hope...lots of all three wrapped in laughter. Kick butts and if necessary switch medical facilities. Find someplace that will LISTEN to you. The road we're on is hard enough, if they ain't gonna listen to the folks who are living the reality...then poop on them. And a great big POOP on this whole cancer thing...I am sooooo done with it.

Please keep in touch~

By ReneP
Posted August 29, 2009 at 2:40 pm
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caringbridge is a wonderful way to let the masses know...

courage and strength with the tests, results, decision making process.

make sure you take time to do something lovely for yourself

in prayer,
Rene

By missbutterfly
Posted August 30, 2009 at 9:04 am
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Hi Ms. Margaret,
I just wanted you to know you are in my thoughts and prayers.So happy someone listened and is doing the MRI for you. I understand about the husband caregiver thing. Mine,(bless his heart) I think will have his handsfull just doing my children and household duties. There is nothing like a determined , pissed off sister to get someone to listen and give answers that are needed.My experience this past week when we met with the radiologist and my hubby, mom, and sister all came.Love and prayers to you,please keep us poated.Melissa

By nancyc
Posted August 30, 2009 at 5:58 pm
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Margaret,
Gosh....this goes way beyond treatment....it speaks to working with doctors and others who are able to LISTEN to us....not interrupt right away and start on their own agenda, but LISTEN to the real experts about our bodies...those inhabiting them! Studies have been done in recent years about doctor/patient interaction, and it was shown that on average, many doctors interrupt their patients after only 8 seconds. Some after a minute or less. I recently spent 15 min with a new psychiatrist, and decided not to see him again. He wasn't a good listener! I figured that listening well was necessary in a shrink.
Lots of oncs will tell you that there isn't any reason to remove a breast tumor or breast if you have st 4 disease, except that there is. More recent research has shown that removing the primary BC site leads to less metastasis. Wow...what a concept! It seemed to me to be a commonsensical position that lowering the tumor burden, and certainly, when possible, removing the primary site of cancer would slow the spread of the disease to other areas. Certainly, many women will do much better emotionally if surgery is offered as a choice.
I've often said that having cancer is a series of opportunities for us to learn to be assertive. Learning how to advocate for ourselves is a big part of getting good treatment.
As far as palliative care is concerned....great idea. It's a new specialty, and a very needed one. Having specialists in the needs of chronically ill people for pain and symptom management is great. The focus being on helping us to feel as well as possible, to be as comfortable as possible, and allow for the best quality of life is something that other docs aren't always very good at. I personally have been connected to a hospice/palliative care organization for over a year now. At this time, I don't need much, but there have been times when having someone to whom I could open up about the stresses I was trying to cope with, and who was willing/able to take care of symptoms was a huge relief.
I wish you a better MRI outcome than you fear, more comfort, more of anything and everything that contributes to your peace of mind and well being. Consider yourself hugged, Nancy

By maryk58
Posted September 24, 2009 at 7:03 pm
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Hi Margaret27217,
I also had numb chin syndrome. Exactly 1/2 of my chin, the left side went numb, including slight numbness of my teeth and gums on that side. Despite finding that on several web sites listed as a cancer symptom (and I was a 14 yr bc survivor) whenever I mentioned it in a medical setting it was pooh poohed. My Dr. did some tests and said I probably had Paget's disease since there was some shadowing on the bones in the x-rays. He ordered bone scan which he forgot to get a copy of until I was in his office - it said “significant for metastasis to cervical dorsal thoracic spine, pelvis, right femur, left humerus and skull”. He referred me to an oncologist who also insisted that I had Paget's disease since it had been so long since my bc. Needless to say, I immediately changed PCPs and Oncos. After maybe 2 months on femara, the chin numbness disappeared, so I think a bone met was pressing on a nerve and the femara annihilated it.

I need to remember that my medical team works for me, they aren't doing me a 'favor'. I don't feel like I'm "bothering" my plumber if I expect him to do the job I'm paying him for. Maybe since insurance pays, I sometimes think it's "free" medical treatment. That insurance is part of my salary; I earn it and I'm paying for my medical care. Getting off the soapbox now teehee!! Best of health and wellness to you.

Welcome to Inspire!

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