Tuesday, May 29, 2012

LOVE AND SUPPORT FOR MY BLOG BUDDY, ALLI

I am upset.  It's personal.  We are a pretty tightly knit group within the world of social media.  My friend, Alli who blogs at Life in Transition left a comment on something I wrote last week.  Her comment served as a reminder that I am very behind in my reading.  I bounced over to her blog and was ELATED to read that she is in a relationship with someone.

That was Friday afternoon.  While I was reading and expressing my joy, she was in the throes of a crisis.  She took the time to thank me for my comments on her blog while she, once again, had the oxygen sucked from her lungs.  I don't know how she had "it" to reply to my happy comment.  By "it" I mean any energy in any form whatsoever to do ANYTHING other than curl up in fetal position somewhere and just be damn angry.  I am.  Angry.  For Alli.  And for many others, but today, specifically, for Alli.

That blogroll on the side of this page is, as I've said plenty of times, mostly exclusive.  Exclusive as in....I read more blogs than I have listed, but generally I go from one blog to the next and then, immediately forget those I clicked to are not on my list.  I'm working on it..... I have the blogroll set up to include the title of the most recent post.  Its order changes constantly.  Blogger keeps track when someone adds a new entry.  And the blogroll is in chronological order with the most recently updated blog always in the top spot.

Last night, as I was winding down from a relaxing holiday weekend, I scanned the blogroll.  I didn't like the title of Alli's blog and immediately clicked over.  Apparently, Alli is now dealing with endometrial cancer.  According to what she was told on Friday, it "could be advanced" and it would appear it's likely the tamoxifen used to keep her breast cancer in check is the cause of the endometrial cancer.

There's no other information to share here.  Please make a note to check on Alli.  She's waiting to hear from her doctor regarding surgery which is the next step in determining what lies ahead.  I hope that the surgery is scheduled quickly and I hope the doctor is wrong.  Enough is enough already.  And THIS is enough.

I think when I bitch about the lack of meaningful research, there are some who want to say that things are different, things are better.  I'm not going to deny that we've all gotten doctorates in Early Detection.  Screening methods have gotten better, but early detection is still just what the words imply.  We are still hearing, "You have cancer."  We are just hearing it a tad sooner.  Thirty percent of those "early detected" cancers WILL still metastasize.

Surgery is not as radical as it was years ago.  No, I suppose not.  They are now "modified radical mastectomies" rather than plain old "radical mastectomies" but talk to one of my friends with a very early stage cancer whose surgical complications are ongoing and whose most recent complication was a collapsed lung.... And not just a simple collapsed lung but a pneumothorax which, if I understand her correctly, means her organs smashed into her heart.  I only know that she's been in and out of the hospital with scary low blood pressure numbers, many tests and emergency surgery.  For her very simple, early stage breast cancer.

Chemotherapy is better tolerated.  On this, I call bullshit All The Way.  Same drugs, same TOXIC drugs. They are given at different intervals to reduce the immediate side effects.  They are "perfecting" anti-nausea drugs which, for what it's worth, don't even come close to a good, old fashioned bag of weed.  Marijuana, which is NOT legal in this state but even if it happens to be legal in YOURS, IS still a violation of federal law.  The toxic chemo drugs are the same. They are even still in short supply.  Yes, there are new drugs on the scene and yes, there are vaccines being studied.  BUT..... it's twenty years or more of The Same Stuff and it ain't The Right Stuff, either.

Suppression of estrogen is known to be a key factor in helping keep the disease at bay for estrogen receptive cancers which are in the majority.  My mom was on tamoxifen after she was finished with her chemotherapy in1988.  My mom had her share of gynecologic issues over the years.  All related to the tamoxifen.  That, my friends, is the same damn tamoxifen that Alli was taking until most recently.  The same drug that they've known for all these years can cause uterine problems including cancer and they haven't found a method of minimizing THAT rather significant side effect.

Meaningful progress?  Where?  Can someone please point me in that direction because I don't see anything that resembles progress AT ALL......  Before we can add the adjective to this phrase, we need a noun.  Progress, according to Merriam Webster, "a forward or onward movement (as to an objective or to a goal)" is a noun and it's one we have yet to incorporate into the breast cancer conversation.

I don't care how many things we bathe in pink or how many ribbons are ceremoniously (really, a better word would be sanctimoniously) hung from the most prominent places around the world, there is no progress.  I defy anyone to argue differently.  Don't even try.  At least not with me.  I wasn't the beneficiary of any "so called progress."  Sell your snake oil elsewhere cuz I ain't buying it.  Period.

This concludes the highlights of the "where is the meaningful progress" portion of today's rant.  Of course, I strayed far from my point.  My friend.  Please.... Just keep Alli in your thoughts as this next mess plays out.  If she's not already your friend, she is MY friend and I'm very big of this friend of a friend thing.  

Alli.... sending love your way... and hopefully lots of support from anyone who stumbles upon my blog and may not already be reading yours.

xoxoxo  

 


10 comments:

  1. AnneMarie, thank you for blogging about Alli. I wouldn't have known about her if it weren't for you. Now I've read her blog and I'm sending best wishes her way as well.

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    1. Thanks, Idelle.

      The way I look at this, one can never have enough support..... Hope all is well with you!!

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  2. AnneMarie,

    I read Alli's posting (she's on my blogroll, too) and was just taken aback. I left her a comment and am praying for her. She's been dealt a pretty awful hand, and I so agree that these treatments we have in the name of "beating" cancer have such awful consequences. I'm angry, too. Thank you for your honesty, as always.

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    1. Me too, Beth. Talk about turning on a dime? She's sharing joy in her last post and then this??? I felt like someone punched me in the gut when I saw those words. I try to channel sadness and turn it into controlled anger.... using that as fuel to keep me going. We simply must insist upon better.... too many years of the same old, same old.....

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  3. AnneMarie:
    I am so sorry to hear about Alli's new ordeal. And I agree with you 200% on the "progress" being made in treating breast cancer. As I read your post today, I got more and more irritated (not at you, my dear), because I've also been there before. Have had 2 "modified" radical mastectomies - no matter what it's called, my breasts were hacked off. Been through chemo twice too - even with the anti nausea medications I could practically barf on command. I didn't have to take tamoxifen as I had no hormone receptors - lucky me! But I went for genetic testing and learned I had a BRCA1 mutation, so there went the uterus and ovaries. I remember crying after surgery when I realized ALL of my female parts were GONE. OK, so maybe I beat cancer, and no one dies from menopause, but can anyone in the medical profession actually figure out how to manage it a little better???

    I realize my situation doesn't compare to Alli's, and I can only imagine how horrific it must be to have this potential diagnosis hanging over her head. I pray she will be ok. But like you, I'm so tired of the medical profession boasting about their progress and how much better treatment is today. Maybe they are doing a better job of eradicating breast cancer in our bodies. But they are doing a lousy job managing the after effects.

    Keep hollering, AnneMarie. If enough of us do it, maybe one day they'll listen and things WILL get better.

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    1. Thanks, Ellen.

      I, too have no more "parts" left and I can tell you that really messed with my head. I have "no known mutations" but both were "wacky." I think one was recently declassified. That memo is likely in the stacks of unread mail in my office. Miss Organization. Me. In an epic disaster on the focus issues. "We can put you on adderall or ritalin" Umm... yeah.. .not happening.....

      This "fix one thing, cause another" has to stop already.

      I agree... if enough of us keep hollering, back the right researchers, support the right organizations...... we can make a difference.

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  4. I was just shattered to read Alli's post about this. Thank you for writing more about her. I'm just so gobsmacked, I don't even know what to say. I'm so fond of her and so happy about her engagement...

    Just stunned.

    xoxo, Kathi

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    1. The connections here are as real as they get. We are all invested in the lives of those with whom we interact. My life has been enriched by so many people in less than one year. And sometimes, it hurts. This hurts.

      xoxox

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  5. What happened to Alli? Her blog has been erased.

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    1. She has another space...

      http://unendingcuts.blogspot.com/2013/06/when-survivors-guilt-becomes.html?spref=fb

      If I remember, her original blog was hijacked..... That's the new one....

      xoxo

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