"Feral ~ from feminine of ferus wild: having escaped from domestication and become wild"...




Thursday

a new kind of normal

 you! YOU whose reading this! This is to all of you who have been through the tunnel of doom and have returned looking like a rough-uped tattered eared guinea pig who accidently went through the wash but knew somehow that if they clung to the big white underpants that balled up with the cat tshirt that proclaimed "my therapist has whiskers" and then gasped to breathe at the right moment when this balled up pinnacle of survival hit the top of the washing machine where the pocket of air was...you guinea pigs out there know exactly what I am talking about here, and so you know what has happened in my life these past weeks...there is no explanation but this ~


survival + acceptance + adaptation = "a new kind of normal"

my favorite guys...


I havent posted in awhile as you have noticed...well frankly because you all would have heard "wah wah wah!" turned to "whine whine whine!" then to "wail wail wail!" and then to "grrrr grrrr grrrr" ( but at this point, this is when mr. foresterman knew we were getting our mojo back and was very busy keeping me from staggering around with blunty end scissors) ...and if I were you I would have walked away from reading that kind of post, shaking my head thinking "if i wanted to hear that kind of noise I would have told my mother at last year's Christmas dinner that it was really me all those years who was pilfering her currant and raspberry crop and not the wild rabbits.."...or insert some childhood "bad child" memory  like that here that invokes your mother's amendment rights to being a victim and bringing up the fact once again of  "did you know how many hours it took to bring you into the world?I suffered for WEEKS"...(and dont ever point out to them that hours and weeks are different measures of time - they will then escalate to your grammar school days and  their sacrificial volunteerism... its not pretty and it wont end until new years...just dont.)

a rock jack -
holds the fence down.
sometimes life is like a rock jack .

I was very crippled with this Blood clot that extended from my calf to my thigh - I was using a wheelchair when i could.  We were averaging two visits to Billings per week, at 5 hours round trip a pop - and taking short staggers in every little field imaginable on the way there...but I did  learn also that I am small enough to kinda stand up in the truck, walking baby chick steps to make sure that no clots wanted to migrate to new land  ...Im pretty sure I could be a total circus act now...  And then once we arrived at the Coumadin Clinic, they told me to stop the lovenox shots but now I am on the rollercoaster of Coumadin blood thinning therapy... This I found out is where they look at you concerned & ask if you feel okay if your blood INR clotting count is low, and then later on in the week look at you concerned & ask if you feel okay if its high, and then when you mention that you had some nosebleeding, they look at you like your victim mom does at holidays, narrowing their eyes and with pursed lips state "try a humidfier" as if you were trying to bleed on purpose. And theres others there dressed in scrubs- although friendly looking, they complain about your petite veins in a scary sing song voice- veins that up to this point has sustained you through cliffs and horses and babies and teenagers and life stuff and now you sit in a chair listening to them berate these poor quivering little blood noodles while they stick the needle in again and again, trying to draw  blood because no, no you are too special to just do the easy fingersticks, somehow implying that you adore these blood draws and had conspired with your blood noodles to make the scrub people feel inept...all of this done to see if the warfarin level of rat poison is leveling off to where you will not clot and blow out your lungs or brains with an embolism if you even think of the idea of giving your husband a friendly hug, or taking a hot bath...

Now i ASK YOU HONESTLY.  at this point and time, would it have been good for me to have posted something?


seriously -It would be like inviting me to a dinner party and the special guest, Father Joe, of the Holy Rosary of Perpetual Penitent Persons turns to innocently ask me "so, how are you feeling?" in front of a full table crowd of 22 and i proceed to speak vehemently and passionately about what travesty i have been through, my voice rising even higher comparing myself to the poor, devoted, pain and health stricken Saints themselves, abet better dressed...a shattered helpless victim who must submit themselves again and again to medical science for the knowledge and health of the common good of all the people ...  yes, even I hated sitting in an empty room with my annoying self during these last few weeks..and those poor medical scrub people who had to see the wrath and whine in my eyes . It was like a real bad joan crawford movie...with a forester.

these photos were taken in March of 2011 - but i walk in them in my thoughts...


SO  needless to say you should be grateful I havent posted as I am an open book people- Im an open book when it comes to stupid emotions. stupid, dramatic AND selfish emotions... It would not have been pretty, especially if i had a kleenex box to cling to and wave around, dramatically letting the tissues float to the ground, to the table, on peoples plates...And so I gave myself time before i posted again,  to make sure I protect the innocent, the not so innocent and those in between who sit on the fence of "did she really write that?" But most importantly, to protect ~

because did i also mention I am in surgical menopause, the second time in ten years? Hotflashes, nightsweats, emotional breakdowns about that tomato slice that fell on the floor, normal stuff like that...  Needless to say, it isnt me who is the saint here, its Saint Mr. foresterman, thats who....

and you too. you  waited. you encouraged. you prayed. 

Wonderful Shirley from http://rideagoodhorse.blogspot.com/
had masses said for me.  
sent a St. Peregrine medal.


Many of you emailed me personally to encourage me, and ask me if I was breathing :).

And all the comments you have left here...you added to my joys when my joys could be counted on one hand.

I owe you all so much more then just Thank you :)





(but you really dont want me cooking for you...so we will leave it at that for now...)




my home...and my boys.


So now things have changed these last few days. One of the reasons I love Montana is of its bi-polar weather - you can get dumped wiith snow, and in three days it melts, making the world feel just like Spring is around the corner and it will be all okay - it makes you sing, and sit in the sun, forgetting how bad things can be, enjoying moments rather then entire days...Its a good place to be.  I have a new kind of normal of enjoying moments, and its okay. I am getting healthier, and there are more and more good moments.


Athough i wear a specially designed stocking 22 hours a day on my left leg to help it circulate blood back to my heart, to keep me limber so i can walk and have Ebony snuffle into my hat, the blood clot is starting to break down, and I can now bend it without pain, put weight on it without pain, although stairs are tricky - it is getting better, and God willing will go away forever in 6 months.  The medicine, although it really is rat poison, is keeping me from experiencing death through Embolism, a very good thing so I can still bring treats to Ebony without risking dislodging a clot. And even though I cant take hormones anymore because of the blood clot risk,  thats okay, because my new scar from the latest surgery is now adhered shut permanently so i can still go outside for mild horse therapy without dropping any organs, visiting ebony, scratching between his ears and his favorite spot....off topic - i do not recollect as a child ever seeing Roy Rogers, John Wayne, Hoss or Tonto scratch their horse in the groin on TV, but in the real world we all know that a geldings fav spot is that groove between their thigh and their 'hoo-ha-hee-nis', though no one talks about it...seriously, ask one of those natural horse trainer people about it - thats where momma horse rubs her nose to comfort her colt...really! And yes, I really do think they left me under a little too long during surgery; why do you ask? Okay where was I ? yes, back to a new equation -

"survival + acceptance + adaptation = "a new kind of normal"


and with this new kind of normal, we had to go through the wash and be prepared to face a very hard decision when they decided on the treatment for the Unicentric Castlemans. It was recommended by the Hematologist Oncologist, and the Radiation Oncologist that I start radiation therapy right away, on the small amount of mass that was left on my iliac vein after surgery in October. 4 weeks at 5 days a week, 20 treatments total, staying in Billings...to start before Thanksgiving.

but I told them  "no."

Why?

because they could only produce a handful of cases where Radiation is effective - most were pre-surgery to reduce the size. There are no statistics, no percentages with Unicentric Castlemans - its on the International Rare disease list - there are no statistics because there arent enough cases to form a bias. There is no standard treatment.  But there are some cases where that small amount of mass left behind will die and leave a scar. There are also some cases where it can come back, and spread. But when the total number documented to your doctors is under 22 cases total, and most of those cases do not have the same medical background you have, decisions for treatment dont come easy.   And once you radiate an area, you cannot radiate it again. There are temporary and possibly permanent side effects involving my leg and bowels from the radiation. And the possibility exists that the mass wouldnt even be affected by the Radiation. This was a decision that was not taken lightly - it is rare and I am now a pioneer in the medical community. My new kind of normal. 

How rare?  I am #333 registered with the International Castlemans Organization.  In the world.

We are going to take a wait and see approach. 

Because as with all things,

Its in God's hands now.





~

31 comments:

  1. oh, feral. you just keep on surprising us. nice to hear from you again. glad you've made it through the major wash cycle (i hope). lordy. and i know you weighed the decision on radiation from every angle, aspect, possible result so i know you did the right thing for you.

    hugs to your foresterman. God bless you in your emotional and physical roller coaster...

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  2. In situations like this, you need to be "selfish", to do what is best for you. I know you have many good doctors, but I am confused about them not doing anything near the 'iliac' artery. In 2006, my husband had an iliac-fermoral artery bypass, which means they had to cut the artery somewhere in order to reroute it. Anyway, prayers to you for healing.

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  3. your wonderful attitude coupled with the support of a man who is obviously a wonderful husband, of course you are special! Glad things are omproving with the clot , and I wouldn't mind at all if you post to whine a little! Goodness knows you have the right . I will contiunue to keep you in my prayers

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  4. I just want to tell you how much I love you. You are amazing and yes my dear I would love to read about your scared-ed-ness, your fears, you bouts of fury, and your bouts of peace. I love you and am so thankful to know you. I've missed out on your blog for the past 6 months or so, and I'm so sorry you are going through this. That's compassion talkin' not pity because you are feral and you wouldn't take pity from me no way. God bless you and keep you and yes mam Champ's favorite spot to be rubbed is right between his leg and his hoo haw, and yes somtimes all around his sheath and between his cheeks.....I love my horse and I aim to please! God bless and keep you dear Sister and I'll suit up in my prayer armor and fight alongside you!

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  5. You really have been put though the wringer, haven't you? Sorry it has been such a hard time.

    I see your point about the radiation, totally understandable.

    I am so glad that you have Mr. Forestman there to help you and watch over you!

    So glad to finally hear from you - I would have some cheese with that whine, have just been concerned.

    {{{HUGS}}}

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  6. Ok I must say I giggled about the guinea pig in the wash cycle- you have such a vivid way of describing things conjured up in the convolutions of your very unique mind.
    I applaud the decision to not take radiation- it could not have been easy, and it shows that you are one strong minded lady.

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  7. I don't care if you would have had a post that was whining! I just want to know you are ok. Sounds like you are hanging in there. So glad you finally came back to us.

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  8. Oh Feral I do not know where to start I am crying thinking of what you have been going through. I have been thinking of you everyday.
    I have no idea why this is happening to you but boy Mr. Foresterman is the luckiest guy in the world to have such a brave strong woman, you in turn are the luckiest girl in the world to have a saint for a husband. This must be the most emotional thing a couple could go through and you two are doing it together.
    I want to picture you smiling and laughing and riding around on your beautiful horse in the Montana sun.
    I do know this day is going to come and you will look back at this horrible month or should I say much more and know just how loved you are by so many and have managed to hold on to your special sense of humour we all adore.
    I truly wish I could give you a hug but I am sure if I did I would find it extremely hard to let go.
    Things will work out because everyone one is praying for you and you are our Feral Woman and we love you. Now start whining it is OK we will listen. Take care my dear friend. B

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  9. It is so good to hear from you Feral Woman! I'm very sorry that you are going through this awful ordeal. That wash cycle you described reminds me of my Grandma's old fashioned washing machine - you've been jerked around by the agitator, then put through the ringer. But you have come through this wash with your great sense of humor and your strong will. I'm glad you are feeling better and that your good moments are on the rise. And glad you are getting some important horsey therapy. (I have mares here, or I'd run out to the barn right now and try out those thigh scritches.) I pray you and Mr. Forestman have many blessings in store for you as you kick this rare disease. The two of you sound like a wonderful couple and an unbeatable force.

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  10. Oh good I was finally able to take that deep breath.Please don't stay away so long again. We will listen to anything you have to say....if you want to rant rave or have a fit ....feel free. Even just let us know you are out there:)Ew I think I just sounded like that mother:)

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  11. So glad to hear from you again!! You are one tough woman and so we know you must have really gone through the wash cycle (as a guinea pig not so sure though it was funny) and you are out this side. Cant believe only 333 world wide?? thats sure not very many.

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  12. Hey sweetie, You are welcome for the St. Peregrine medal. I think of you often and I do pray for you, when I do pray. I'm praying my prayer life gets more prayerful too. You are my second 'friend' this week who is refusing treatment. It's like my husband always says, we know our bodies and what's best for us. Stay strong and keep us informed. I missed you and thought of you a lot during your silence. And guess what? You can wail, whine, wallow, whatev....to us anytime you want. That's what we're here for!

    Cindy Bee

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  13. How about a twitter account? Where, in 140 characters, you surely can't get too too carried away ;-). That way you could tweet "I'm okay. Don't worry." or "I'm not okay, send prayers." so we wouldn't be worried sick. Because really, it's all about us ;-).

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  14. Good to hear from you. Your post was "real". I don't even know what to say...so, I say stupid stuff all the time...but, I'm thinking of you and Mr. Forestman and praying. Blessings from Wisconsin.

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  15. You are one special woman, who in the thick of things can turn around and make others laugh until they wet their pants! Father Joe, of the Holy Rosary of Perpetual Penitent Persons; tattered-eared guinea pigs with balled up underpants in a washing machine; blood noodles!
    Thank you for being so amazing. Thank God for watching over you and helping you through this. You must be special, being #333 and all!
    Love your equation. Love your strength and guts - always have admired that!

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  16. So good to hear from you and life sucks sometimes. #333 sounds like a very lucky number and I will think positive thoughtst that the tumor will shrink and dry up...poof and be gone! Enjoy everyday and you have a wonderful husband and animals to give you peace and comfort. I think if you often and am so glad you are hanging in there. Love Betsy

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  17. You blow me away with your grace and strength and humor. Many gigantic hugs to you girlfriend.

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  18. Wow, your courage is amazing! What a strong incredible woman you are! Your story grips me and commands soft silent prayers for you. Love the peaceful surrounding and the men in your life that support you...#333 that's a special #...a lucky number!

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  19. You are awesome! Your husband is awesome! I was so glad to see a new posting! I've been eager to see how you are doing! You've been through the ringer, so now, hopefully you will just get better and better every day!!!

    Hugs to you and your sweet husband,

    Susan

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  20. Hooray and Hallelujah! What good news. I so admire your courage in saying no to the radiation when the statistics don't support trying it.

    I hope you are still giving yourself permission to wail and whine and mope and meander through your memories of health and your hopes for the future.

    Peace.

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  21. So great to hear from you, but I do understand when sometimes it's just too hard to pull up to the computer. As said before, we don't mind the whine, wail and grrr-ing! My prayers continue that that clot will disappear and be no more trouble to you, tho I know it takes time.

    God bless you and your hubby as you go through this. Take care of yourself.

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  22. I've been thinking of you and was so glad to see your post. I'm glad you're not doing the radiation and the reasons you gave made sense to me. Prayers continue to go up for you and soon you'll be back doing most everything you love doing in the environment you so love. Am looking forward to more of your posts and breathtaking photographs. God Bless. Big hugs xo

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  23. You really are amazing...and if anything ever happens to me that is remotely as traumatic as what you are going through, I wanna be just like you.

    I too think that that #333 is a special number is some way...luck or whatever it may be called.

    You're always in our prayers~

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  24. Girl..you just keep on keeping on!..I think a wait and see attitude could be the right one for now. But a post every now and then with no news is good news I would love ...though I know when you are not feeling well and going back and forth the last thing you really want to do is write about it...that's how I am anyway. We all get a "new normal" every now and then and we do what we do best...pick ourselves up..dust outselves off and start all over again.

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  25. “The new always happens against the overwhelming odds of statistical laws and their probability, which for all practical, everyday purposes amounts to certainty; the new therefore always appears in the guise of a miracle.”

    Hannah Arendt

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  26. Hang in there. You have a unique way of looking at life. I have faith it will turn out ok. My thoughts are with your kick butt attitude.

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  27. This was a wonderful report on courage, humor, and adjustment to a new normal. I feel terrible that you have to go through so much uncertainty and I really admire the way you handle it. Your description of the guinea pig in the washing machine will stay with me for a long time to come. All the best.

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  28. You are a freakin' amazing writer! And all the rest of the good things everybody else said before me! Really! I've been down Coumadin Lane with my mom just wishin' and hopin' for good sticks and good numbers. So glad you are rallying. Sandra

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  29. Go forth, go on, go strong - a new kind of normal :-) (actually, not so new to you since that's exactly what you are doing!)

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  30. I agree. You are not only an amazing writer, you are one special woman. Thanks for sharing all this with us. You have been put to the test, that's for sure. You have one beautiful attitude....love it. All the best to you and your boys.

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  31. Yes, you should write this. And all these feelings.

    Blogging isn't all about happy/happy and perfect familis with perfect teeth making perfect cupcakes for each perfect holiday.

    Blogger is an online journal for you to write and share your heart...to get the pain and fear out of your guts so they don't cause you to explode.

    What frightening times.

    The resiliency of the human spirit is astonishing, isn't it?

    And the strides medicine has taken...oh my blessings.

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I am feral, so although I dont respond at all like most domesticated bloggers, I will try my best - Thank you for even wanting to leave a comment, as it may draw me out from the woods from whence I came!

Or under a rock, it depends most days...