LadyB's dance with cancer

[LadyB]

There are actually two threads elsewhere on the forum telling my tale and I put them up here in case they can help anyone else. A certain amount of denial (imagine that) kept me from posting over here until now.
One was started FOR me when I was in the hospital (for a full month) and unable to post for myself until later in that thread
viewtopic.php?f=6&t=26558

The other I started myself once I WAS able to use my laptop from the hospital
viewtopic.php?f=19&t=26630
and has the most recent update.

Yes, they're both long, I do tend to live my life out loud, and I'm eternally grateful for all the cheering and healing thoughts already sent my way. There's a lot we can't say about what 'works' for cancer, but I can tell you first-hand, knowing and FEELING that all kinds of folks are holding onto you REALLY helps the PERSON struggling with cancer. Absolutely.

LadyB

[Lady Alinor]

I LOVE how you "Live out loud"

Perhaps it would help if you shared in this room what Wise Woman ways you've been utilizing. Seven Rivers, Bach's, infusions so on and so on (even your writing).

[Movlin]

i agree - i LOVE your living out loud as well. i'm not sure you realize how much information and wisdom you pass on when you post about your journey.

i'm also glad you can feel the "anchoring" of women (and some men, i'm sure) hanging on to you.

as my daughter's would say - "you're a BEAST!" (teen slang for someone who is incredibly strong in the face of overwhelming obstacles)

blessings,
mo

[LadyB]

Well, as I detail in the last bunch of posts on that thread I started for myself, the Seven Rivers are at their BEST when they kick in and you hardly noticed you were DOING them. When I was hit with the Potentially BAD News (a NEW spot on my liver) I tumbled into Step 0 - do NOTHING. I took it in, I stared it in the face, I CRIED (a lot) and I stayed away from EVERYbody. With just one small neudge from George and Gracie (who I've decided are running the universe) I started Step 1 - gather information. The neudge was the radiologist making note of my uterus being 'small in size but otherwise unremarkable'. What's just slightly REMARKABLE is that I no longer HAVE one....Hellloooooooooo. So a nice, long phone conversation later, I found out he ALSO failed to note a couple of MAJOR improvements, like the 'marked thickening of intestinal wall' was COMPLETELY gone, and the previously concerning diverticula were now down to SO few as to be 'normal', so he made NO note of it. Also the 'fatty deposits' in my liver are ALL GONE. Then came Step 2 Engage the Energy. Wow. Did things start to HAPPEN. I started to own my own anger over all of this, began to see myself standing up and not lying in a hospital bed while everyone talks OVER me, began to consider what *I* will do next. Things started coming to me in the mail (Serpentessa's unbelievable snakeskin and wonderous words) and via my computer (the link to the article that outlined the Telogen Effluvium (I just love SAYING that) that I'm experiencing (post surgical trauma NORMAL hair loss) as not just another sign of Damage Done To Me, but as an incredible HEALING RESPONSE that my brilliant body took on without consulting with my head. Wow. It RE-DIRECTED the stuff needed to continually grow hair into the MASSIVE healing I STILL need to be doing. And THAT, friends, walked me right to Step 3 - NOURISH and tonify. Ohhhh yeah. Everybody's been TELLING me I have to do this, and I HAVE to eat that, and I SHOULD be doing infusions......but NOW, I KNOW. Now, I'm ready to GIVE my body MORE nourishment than I ever thought it needed because I understand the unbelievable healing project we've got going here. So I gots me a little cocktail goin'. I dissolve my liquid protein into a glass of infusion, add a shot of Burdock Root tincture (to clear any NEW 'fatty deposits' as this STILL not right version of ProSource has isolated FRUCTOSE which we know goes STRAIGHT to your liver and can cause fatty deposits. The RIGHT one should be here soon. ANNNND a tablespoon of Comfrey leaf vinegar. Heal them scars and bring on the MINERALS! And use that cocktail to wash down my Chaga mushroom caps, my wholefood multi vitamins and my Vitamin D. (which brings us to Step 5a which is Take Supplements. Step 6, good ole Break and Enter I've done QUITE enough of, thank you very much.....LadyB

[RoseRed]

I don't know if you'll ever realize how much your life (and your sharing of it) has been an inspiration to so many going thru difficult times.

I have to ask tho - did you ever find out what it was that he thought was your uterus?

[LadyB]

What he normally WOULD have written was "uterus is of a small size for a woman of this age or possibly exhibiting a vaginal cuff from a hysterectomy", but since this CT was all about colon/liver, he didn't elaborate. A previous radiologist had also mentioned 'uterus shows no gross changes' (uh, yeah, things that DON'T EXIST usually DON'T!) So what he was seeing was the fact that my cervix is still there.

[crystal woman]

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Sounds like you've had some major catharsis happening for you in the past few weeks LadyB.

I have to ask tho - did you ever find out what it was that he thought was your uterus?

Yes, what was it he thought was your uterus?

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[LadyB]

CW, we posted at virtually the same time. It's above your question post.

[RoseRed]

ah, gotcha!

[LadyB]

So the STEPS of a Dance With Cancer as I'm sure anyone who has posted here knows, involves hope, then doubt, then downright FEAR, a little DENIAL, but mostly STRESS.

My most recent round of suffering involves a truly hideous, itchy inflamed rash around the NEW BANDAGES around the NEW HOLE which just today caved in to become that SAME fistula the HomeCare nurses and I struggled so with all through Feb, March and April. That is very, VERY discouraging and the rash on top of it is bordering on excruciating. Itches as badly as Poison Oak/Ivy and it CANNOT get better if I wear the thick, elastic hernia belt that I MUST wear if I'm on my feet at all. Everything I know about healing a rash does NOT include "and lock it behind tight elastic all day long".....so this is truly miserable. I've put nystatin powder on it when I thought it was a yeast rash (which plagued the areas around the bandages initially, then Gail said she thought it was more bacterial and moved me on to Polysporin (which is around longer than NEOsporin, is MUCH more effective and has FAR fewer allergic reactions) But even with that, the only time the rash calms down is if I take the belt off. So today she moved me up to 1% hydrocortisone cream. Sure, I have my own "All better" salve, but olive-oily stuff won't fly with the bandages. I also tried colloidal silver on it which did little, and ozonated olive oil which seemed to offer some relief, but undermined the adhesives. So I am MISERABLE.

Today's visit was with both Gail (my wound and ostomy nurse) and Dr H (my surgeon) I told Dr H I had a long talk with that radiologist and she said yes, she'd HEARD about it. I noted the things he totally ignored that had gotten BETTER and she assured me that she read the scan too and she SAW them. I advised that 'the patient' needs to HEAR things like that. I need to KNOW what's getting better, especially when it seems NOTHING is. Once again I stressed how I am in pain EVERY SINGLE DAY. I'm knocked off my feet by that pain EVERY SINGLE DAY. I can't stay on my feet for more than 15-20 minutes without the gut pain MAKING me sit. I bristled some when she seemed ready to assume I DON'T have a hernia because this same radiologist who missed so much didn't SEE one. I'm glad Gail jumped in and explained about all the ~inserting~ of the catheter tube pushing the hernia IN and then I was lying on my back.......(hellooooo, ask the PATIENT, she KNOWS she has a hernia, it HURTS!!!!!) CONT'D.....

[LadyB]

The next step in her PLAN is for me to HAVE that dreaded colonoscopy THROUGH the stoma (that should be real fun, ugh) Here's where my dance comes in. Some days I'm SURE they'll pronounce it the most glorious colon they've ever seen, and other days I'm AFRAID of what they might find.

Next step beyond that is to present my 'case' to the tumor board and see what they say. If they're as concerned about that liver lesion as she is, then we'll do a PET scan (yes, more break and enter) which will 'light up' any cancer cells anywhere in my body. Another result to be concerned about.

Because I cried when she suggested we might still wait until AUGUST to 'take down' the colostomy, she then said maybe JULY. At which time, she will, depending on tumor board and test results, biopsy the liver lesion and IF it's malignant, take out HALF of my liver.

And the push will be on to talk me into chemo.And she'll be pushing based on a patient of hers who had colo-rectal cancer metastasize into BOTH her liver AND her lungs and she did chemo, is cancer free and never had to have any surgery. Well, good for her and that's ONE story about SOMEONE ELSE. I would need a LOT more convincing than that. But I can hear where she's coming from - 'this worked. I SAW it 'work'.'

The other difficulty is that my medicaid insurance will cover just about ANYthing the White Coats want to do, (but not nutritional counseling, goddess forbid) but WON'T cover an ND or anyone who might be willing to 'manage' my total care alternatively. And I've been drowning in this tale since the end of November with VERY little income and Disability is just SILENT.

So this is the mess that all too many cancer patient find themselves in. .....LadyB

[crystal woman]

LadyB, I notice you have the same problem as me if I'm making long posts and then the text box starts jumping. I found the best thing for me to do when I know I'm going to make a long post is to type it all and proof read it first on word pad and then copy and paste the whole thing to here in one continuous post.

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[MizB]

Dear LadyB,
I came to this forum back when you were making your mid-life LEAP and have followed your adventures ever since. I have held you in prayer many times and rejoiced with you in the love of your grandbabies and your herbs. You ARE a STRONG WOMAN. You know YOUR BODY, even when it seems at cross purposes with you and I can only imagine the frustration of having fallen into the clutches of the white coats and trying to make YOUR VOICE HEARD!!! You have walked the path of Wise Woman for many, many moons and it is part of your DNA. Listen to it. Trust it. As I read your words about what your insurance will and won't pay for, I wondered if you have explored The Cancer Treatment Centers of America? I have no personal experience with them, but have seen their ads and was struck by the fact they incorporate non-traditional methods to support AMA treatments. I believe there is a center in Seattle which would be the closest to Eugene. Perhaps the non-traditional methods would be covered under the umbrella of their treatments? Here's the website http://www.cancercenter.com/seattle-cli ... atment.cfm
In the meantime, know that prayers for total healing rises on your behalf from way over here in Florida. Be blessed, my sister.
MizB

[LadyB]

Well hi there MizB,
Wow yeah, that mid-life LEAP was quite the trip. Seems like centuries ago. The munchkins beckoning GrammaBee to LEAP are now 8, 6, and 4. Wow.

Just to be clear, I don't vilify all 'white coats'. A whole BUNCH of them worked really, REALLY hard to keep me alive back there in December. And Gail (my wound and ostomy nurse) called ME today just to see how I was, as I seemed pretty upset yesterday. I'm TRYING to put this ever-reopening TUNNEL in my gut into the same category as TELOGEN EFFLUVIUM, the BRILLIANT ability of one's body to RE-DIRECT energy FROM growing and maintaining hair to where it NEEDS to go. It IS far more WiseWoman to see our bodies as amazingly wise rather than just 'messing up'. If this tunnel/fistula keeps insisting on re-opening, there must be a reason. So THIS time, I'm trying not to hate it so much and I'm doing better with stuffing the wicking ribbon into it with surgical tweezers to LET it do what it needs to do. And it may have already done it. The fever, scarpain, 'pinking' of the skin and eventually blowing out two holes through my scar MAY have been my own brilliant body SAVING me from a tiny, deep bit of infection-stuff nobody was aware of. Or, it might not be done yet. NOTHING about this circus is going by MY schedule at all. ....sigh

[cataway]

Glad to hear you are feeling a little bit better, keep on trusting your body to know what it needs. Don't let up on getting all the nutrition you can, you are fighting a battle and you need to "feed the troops" so to speak, but don't forget to feed your soul too if you crave something I say indulge yourself! Get as much sleep as you possibly can this is when your body does the real healing work, studies have shown that the sleep deprived have a vastly lowered ability to heal. Keep up the good work and thank you for reminding me that we all have our crosses to bear and if we work together we can lighten the load. Sending you well wishes and healing energy!!!