Friday, October 21, 2011

Spirit Fingers

I think I finally turned a corner last weekend in terms of finally feeling like I was getting my strength back.  How did I know?  For the first time in nearly two months, I actually felt like getting out of bed! And so I did! It felt good.  Then I did some chores.  And that felt good!  Beloved and I took doggie for a long walk, and that felt good! And I didn't require a comatose nap at all over the whole day.  And that felt really good!  At last I feel like I am on the upswing.  Well, relatively.

And so readers, today I was going to write a really snarky post about Susan G. Komen For The Cure's ridiculous "Less Talk More Action" campaign, and their even more ridonkulous accompanying "fun and meaningful" schedule of activities for Pinktober.  But with "actions" like October 7 as an example;        
On this edition of JEOPARDY!, America's Favorite Quiz Show®, there will be a "pink ribbon" clue. Will you have the correct response? 
Readers,  there's not much more I can add to this, so I invite you to form your own conclusions, as to whether this calendar contains the kinds of "actions" that do anything "meaningful" in the fight to eradicate breast cancer?  Wait, I'll answer in Jeopardy-speak.  Which self-anointed global breast cancer organization's "Less Talk More Action" campaign is a complete waste of time?

Moving right along, and back to breast cancer reality, I thought I would update you on my situation.

Nothing says "I love you" to a cancer patient like
a 750-pill bottle of stool softener
Since I am finally feeling better, of course this meant that this week I started my new chemotherapy.  Although Dr G says this chemotherapy is generally "well tolerated" I know this to mean probably only on the lab rats it was tested on.  I did make the mistake of reading the sweet little pamphlet they always give to you with any new chemo, and did actually see the word "death" mentioned at least once.  A side effect perhaps?  I'm not sure but a comforting thought nonetheless.  But seriously, I'm now back on a chemo, where my old friend, Constipation, is likely to be a regular visitor.  Oh geez.  No one obsesses more about bowel habits than a cancer patient I can tell you.  Needless to say I have cleaned out the laxative aisle at the local pharmacy, and this being America, everything blessedly comes in economy size.

I'm also learning to live with the hand disability and am now attending regular occupational therapy sessions.  I have regained some movement in my fingers, so that I'm able to perform "Spirit Fingers" on command, and am almost able to flip the bird as well. Unfortunately I have yet to regain much strength back, so whilst Spirit Fingers are a fun diversion for Beloved, and flipping the bird is a highly regarded skill by most New Jersey drivers, without strength I am still handless for all intents and purposes.

http://www.lifesolutionsplus.com/swedish-cutting-board-p-106.html
With that said I have invested in some "life aids" as they are known, which are quite useful particularly in the kitchen.  Readers, as you know, I love to cook, and my new found limitations in this department have been most depressing.  But I have not given up.  Here's how I peel potatoes.  I put the potato on a spike, and can then peel it one-handed without it moving around.   This gadget is really useful, and includes a vice for holding things like bowls, cans, bread etc stable.

For the heavier jobs I call on Beloved who is now finally forced to know his way around our kitchen.  He has been very good, but has not taken to the role of sous chef very easily.  Apparently he doesn't require any instruction on the finer points of chopping, mashing, stirring or draining even though his only forays into cooking involve a bowl, milk and a box of cereal.  And he even refuses to say "Yes Chef" when I speak to him in the kitchen.  Truthfully though, Beloved is a tremendous help and we're getting through this latest nightmare together, as we've always done.

The other issue that I'm working on, is trying to get my vehicle modified so that I can safely and comfortably drive with one hand.  Honestly though the process here in New Jersey is so convoluted and apparently a closely guarded State secret that can only be revealed when one knows the right questions to ask. With timely driver assessment appointments so difficult to get, I think we might have more chance of curing cancer in the interim, so maybe I'll just wait.

I'm also attending regular physical therapy sessions to rebuild the leg muscles that were lost to steroid-induced myopathy.  It's a slow and intensive process, but I hope soon to be able to get out of a chair like the spry and agile 41 year-old that I used to be.  It will be nice to be able to climb up stairs again soon as well, without feeling like I have to call 911 to haul me up the last half.

So in summary, I'm getting there and I'm a long way from where I was two months ago, when this latest nightmare befell us.  We're coming up for air and learning to live with this new reality.  We are moving forward as best we can, and that feels good.

***********


This post is dedicated to my mother-in-law, without whom I don't know how we would have coped through this latest episode.  Where would we be without the loving and selfless devotion of those who take on the roles of our carers?  I know I'd be up shit creek without a paddle, so thanks MIL from the bottom of our collective heart.  We love you!




http://cheezburger.com/ravenfaye/lolz/View/1084916480











27 comments:

  1. you can't even make up crap like komen saying that knowing the pink ribbon trivia answer is "action."

    puhleeze.

    i'm glad your spirit fingers are up and running. lawd knows my internets are much sadder without your brilliant snark filling up my channels. <3

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  2. 'Stool Softener - Value size!'

    God Bless America Indeed!

    Excellent to hear your health is improving, however you will need greater mental strength to watch Paranormal Activity 3 than you do physical strength in climbing the stairs.

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  3. Great news you are feeling better and ready to start a new chemotherapy. Possibly it was Komen dollars that made this an option for you. There has to be a lot of research....years of research that makes these options of treatment available to you. Wait, 5 or 10 years ago, that option would not have been there and you wouldn't be here to bash breast cancer awareness. It sucks you have cancer. It sucks a lot of us has cancer but Komen is not responsible. Wearing a t shirt you don't approve of is not responsible. Why are you spending the time you have left in such a negative place? Why aren't you seeing all the
    beauty this time of year has to offer? Most people don't get the chance to be healthy, reach age 90, go to sleep one
    night and not wake up. Life is full of hard knocks but if we
    waste time today blaming everyone else for the crap we
    have to go thru, you miss living today. As an ovarian
    cancer survivor, I would love to have read an offensive t
    shirt if it brought attention to early detection. If I would
    have known these things, I may not be in the situation I am
    in. I would love to see walks and fundraising in the name
    of ovarian caner.....almost no one is being cured from that
    but if breast cancer is found early, there is a CURE. Not for
    everyone but at least these movements are saving so
    many. I would love to see more money being raised for
    childhood cancers. These poor kids have no one bringing attention to the hell they have to go thru.
    Nothing you are going thru is fair but a lot of people are
    going thru things and have diseases that will not be cured.
    You have so much more to teach people than all this
    negativity. You understand how fragile life is and what it means to see...really see the leaves change color, see a
    magnificent sunset, or closing your eyes and listening to
    the waves at the end of the summer. There are so many
    people giving up their time and money in the name of
    breast cancer awareness and the cure. Yea for them! The
    cure is just not there right now.....it's no ones fault....it is cancer.... and people are dying from all kinds of
    cancer...dying at the prime of life.....luckily, if we are smart,
    we really live while we are here. All these " misguided
    good doers" are actually trying to help people with all
    forms and stages of breast cancer. I wonder were women
    with metastatic breast cancer would be without people like
    Komen......maybe the same place women with ovarian
    cancer are! I hope you continue to have good days and
    that treatment options continue to be available for you and
    me until a cure is found. I think this is in God's hands and
    everyone is praying in their own ways that He hears our
    prayer.

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  4. 'Coming up for air' sounds good to me Rach. But I do think beloved should join in the 'Yes chef' thingie! Your spirit shines through this post and glad to see the metastatic breast cancer channel broadcasting loud and clear! I hear you. Best, Sarah

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  5. Love the post, agree with every single thing you write including (and especially) navigating the roads in your Garden State. Those jug-handle things don't exist here in the neighbor state of crazy drivers. We just make left turns with oncoming traffic approaching and pray we aren't T-Boned by some aggressive lunatic who is pissed off at someone and uses the accelerator peddle the second he sees us begin our turn. Talk about misplaced aggression!!!

    On a very serious and most heartfelt note, I am thrilled to hear you are feeling better than you've felt in a long time. I'm only around this blogger gang a few months and you were already in the midst of this rough part when I crashed the "party." Keep the good news coming...

    xo
    AnneMarie

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  6. I'm not sure what spirit fingers are, but I'm so happy to read this post and know you're feeling better. You've been missed. By the way, is there truly a stool softener called, "Get it Going?" That's just wrong.

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  7. You can "snark-post" about anything you want and it'll be worth reading. It can be about Komen, pink stuff, bowel movements, your great state of NJ, your little dog, your carers or anything you choose to rant about! I will want to read it. I always say this cancer thing is one long series of getting hit with new info, processing and then mustering up whatever is left in your tank and carrying on until you have to start all over again. That's what you have done again, "mustered up and carried on." So nice to know you have come up for air. While you're up there, breathe and enjoy. Also, I want to say thank you to your MIL and beloved for taking such good care of you!

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  8. I'm hoping after you show me your spirit fingers, you'll show off the jazz hands too.

    xoxox.

    Katie

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  9. @Anonymous I'm not sure it serves any purpose in addressing all of the issues that you have with me, since it's all apparently in God's hands anyway. But perhaps you might want to add to your list that I'm not religious either. But you do what you need to do to cope with your cancer diagnosis and I'll do what I need to do. Just spare me the armchair psychology. I don't need it.

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  10. Anonymous, you can be positive all you want, but it won't change the outcome of cancer. However, being part of a growing movement that is calling on Komen to change its ways WILL change the outcome of cancer.

    In any case, if you had the courage to stand behind your convictions, we'd be calling you by your name right now.

    In the meantime, perhaps you should spend your time extolling the virtue of a good sunset and being jealous of those of us dealing with breast cancer, since apparently we're very, very lucky.

    Katie

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  11. Wow, Anonymous, they let you off easy. BTW, early detection is NOT a cure. There is NO CURE for breast cancer.

    But Rach, it's so good to read the spirit you put into these posts, fingers or no. So glad things are on the upswing!

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  12. Rach, I'm completely uplifted by your spirit fingers, your wit, your honesty, your appreciation of the finer things in life -- like potato vices and stool softener, not necessarily in that order, your commitment to meaningful action, and your love of those wonderful caregivers of yours. Here's to the beloved and the MIL.

    On another note, I'm not sure what 'anonymous' is referring to. I read no blaming, bashing, or negativity in your post. It's hard for people to hear honesty sometimes, and even harder for some to consider that something taken as sacred as the pink ribbon cause now functions as a huge industry. It's a shame that it does. But hopefully, with concerted effort and meaningful dialogue, that will change.

    So glad you're feeling a bit better.

    Gayle Sulik

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  13. Not everyone is called to positivity. Some people are snarky and sarcastic, and they need the laughter and wit of like minded survivors to get through things. Positivity works for some people, for others it doesn't. You're lecturing this woman into being something she isn't. If you're Mrs Positive, good for you. Speak up on your own blog and use your voice there. But don't deride someone else for being who they are, living life to the fullest in THEIR way. Putting on a happy face when she feels bitchy isn't living life to the fullest--it's pretending to be someone she isn't.

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  14. Anonymous ~ you ask where women with METS would be without Komen? They would be in Rachel's current position having valiantly fought MBC for years now. They would be where I am now, with a recurrent diagnosis of METS. Komen ONLY directs 20% of the millions raised each year to research, and it is ONLY for early stage b.c. Furthermore, 22 million of Komen funds annually go toward salaries. -0-, however, goes toward research into the challenges of Stage IV / advanced breast cancer. Why? That is the question demanding an answer, to which Komen is not responding. And which, unfortunately, well-intentioned do-gooders don't ask before engaging in retail-philanthropy. You can find out for yourself by looking at Komen's 990s ~ they are public record. Where would women with METS be without Komen? In the same quagmire we are now with them. Are we a little worse because of Komen? At this point in there organization's corporate development, possibly. Komen requisitioned and is marketing PROMISE ME for pinktober ~ a perfume containing known hormone disrupters and neurotoxicants. With PROMISE ME, Komen has now sunk to the level of other hypocritical corporate entities: knowingly contributing to the proliferation of carcinogens into our environment. Obviously everyone is entitled to their opinion, but the facts cannot be ignored, despite Komen turning a blind eye to 40,000 "facts" each year. If you have have read CancerCulture's blog, you would know that she has researched her facts, and her opinions are informed from them. As for preaching "positive thinking"...obviously you did not read the post...it was nothing if not positive. Humor is always a positive! TC

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  15. Seriously Anonymous?? Have you read the numbers on Komen?
    “Of the estimated total public support and revenue of $2.1 billion from 1982-2010, Komen spent only $491 million on research. This means the remaining estimated $1.6 billion was spent on everything else.” http://cancerculturenow.blogspot.com/2011/01/komen-by-numbers.html
    I am someone who lost the most important person in my life to brain cancer and I would love it if those dedicated to finding the cure for brain cancer would only bring enough awareness to generate the money necessary for research to find the cure....hell,meaningful treatment.
    It seems to me if Komen raised $2.1 billion in the last 32 years and had applied all of that to intensive research, along with other breast cancer research money, we might not be having this conversation…and no one would be losing their life, their loved one, their mother. That kind of money quite possibly could have found a cure by now. But Komen has only invested 23% or only $491 million of that $2.1 BILLION over 32 YEARS on research.
    God knows, you have to be living under a rock not to be aware of breast cancer. Enough!! Research! And stop allowing companies to profit from breast cancer! If they want to support breast cancer research, being truly philanthropic and not capitalistic, then they should choose one of their products or services and donate ALL of their profits to the “pink”.
    Perhaps funds are being drained from childhood cancer and ovarian cancer and brain cancer because they are not as “profitable” for corporations as the “pink”. So, not only are the funds many donors believe are going to breast cancer research, not making it to researchers, but the “pink” machine is sucking in all the charitable dollars that could be supporting important research for other cancers.
    Komen has had 32 years and a ton of money to “find the cure”. FIND THE CURE! Awareness is great…important…until the doctor gives you the diagnosis. Then, the most important thing for all touched is THE CURE. Luck of the draw might determine who gets cancer, but luck of the draw shouldn’t determine who survives.
    Research is the most important key and should receive the most money. Prayers are nice, but praying is not going to cure cancer….research is. If Komen is not going to support research in a major, major way….like it implies…step aside. Then put your pink t-shirt on, do you walk, run and take your money to someone who is ACTUALLY looking for the cure.
    And if you feel so strongly….put your name behind your words.

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  16. Rach,
    OK.... Big mouth back. Wish anonymous would identify herself rather than hide after saying some things that were harsh and some things that are downright inaccurate.

    THERE IS NO CURE FOR BREAST CANCER AND THAT IS A FACT THAT I FEEL I NEED TO MAKE PERFECTLY CLEAR. TIME FOR ME TO REPEAT MY MANTRA-SURVIVE AND CURED DO NOT MEAN THE SAME THING. GOT IT??????

    I'm going to take the high road like you did, Rachel bY even putting that comment through. You SHINE among us.

    XO
    AnneMarie

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  17. Rachel,

    Well, everyone addressed the cowardly "Anonymous" so well, that I can't possibly add to that.

    I'm sooooo glad you are feeling better, and you can be as snarky as you want. I'm so glad to continue being your fan!

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  18. Rachel - let me just say that I truly love you, girl! Admire your spirit, your ability to coin a phrase and your tact for dealing with stupidity. That last part being said, I admire your restraint and tact, cause I certainly would have ripped "Anonymous" a new one.

    Seriously, anonymous - I'm sorry you are an ovarian cancer survivor, but how dare you come to another survivor's blog and slam them for not bowing to the great cancer saviour (<-- now THAT was sarcasm) that is Komen. Have you taken a sip for the pink Kool Aid as well? All those little pink ribbons, races and products that only appear in October don't mean crap as far as actually CURING this monster as survival rates haven't budged in 20 years - the year my mom died of BC brain mets. The stats above are truly, truly on pointe. Think about it: if 1/2 of the billions Komen has raised in the last 10 years went towards REALLY researchin a CURE, this disease would have gone the way of the dinosaur by now. Heck, I'm seven years out and am quite pissed off that mets aren't given the attention they deserve. That's the reality of living with a disease that has no cure. It is far from cute or pink - and I applaud folks like Rachel for telling it like it truly is.

    You might not want to venture over to MY blog if you think Rachel is snarky - but have a wonderful day just the same :-)

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  19. Dearest Rach, naturally one of the things that strikes me most about this post is that it makes me proud to be a physical therapist. Yes, I'll even toot my own horn a little and say, Thank goodness for OT's & PT's. And I think perhaps the best response I can make to ALL the points you made, and particularly to the comments by Anonymous is this: I'd invite anyone to trade places for a week with someone who cannot use her dominant hand or who can't walk, and see just how 'positive' she feels at the end of it. Just today, because I am privileged to get paid to offer one of the most practical & meaningful skills in our healthcare system, a patient of mine who hasn't walked in over two years was able to get up & stroll with a walker from one end of a long hall to the other & back again. There were cheers from the nursing staff as we made our way down the hall together. And when we were done, my patient sat down, smiled for the first time since I've known him, and cried.

    Massive hugs to you, Sweet One, and I'm ceremonially flipping the bird right along with you to all the sanctimonious nitwits who are so blinded by their pink agenda, they've lost the ability to recognize reality & express genuine compassion.

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  20. Hi Rachel, I'm just glad to read that you're feeling somewhat better and able to type more. Hope you'll keep writing as best you can.

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  21. So glad you are feeling better! I laughed my butt off a few times during while reading this. Well, you know I didn't actually lose my butt, though wouldn't that be nice?, but, I did laugh none the less. I seriously have the same bottles of laxatives!

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  22. Spirit fingers and redonkulous! I thought those were only terms used in our house. Thanks for the laugh and hope you continue to improve and feel better :)

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