LadyB's dance with cancer

[Movlin]

chocolat is a comfort movie full of comfort food.

hang in there lady b - you can do this.

i was reading this latest post and it occured to me that to combine all your posts would make the beginnings of an important book on patience, healing, anger, preserverance, western med & natural, love and courage. you could touch so many and by doing so, let them know you they are not alone in their struggles. you have a great way with words, injecting humor where there is pain, showing strength in your vulnerability....it's truly a blessing for those of us who read your posts.

if you decide you want to try and compile this experience into a book let me know - i will ghost write it for you if you like (have been a produced screenwriter for many years but also write in book format). i would be proud to do it.

many blessings,
mo

[LadyB]

Well Movlin, if ever there was a book that I most likely need to write myself, this is probably it. But SHOULD we decide to turn it into a major motion picture, I'll give ye a holler.

SO. Where was we? Ah yes, I'd just gotten the BAD news that the cancer SPOT isn't a silly SPOT and it's larger. New surgeon lost his first point in telling me it's 'minimally' larger when, in fact, it's more than TWICE the size it was 6 months ago (got that from my ND who got the radiologist's report.) So that changes the game.

So for awhile I got ok with 'Do The Repairs, Hold off on SPOT' so long as someone who knows a lot more than I do could assure me that SPOT isn't dangerous and I could live with it for 6 months or more. (that's before I knew it had doubled in size already) and give me a chance to work on it with alternatives. So I had THREE people to connect with during this 3 days before Thanksgiving. The ND oncologist, the psych nurse, and the New Surgeon with EVERYTHING pretty much hanging on New Surgeon's comeback from consulting with a liver specialist AND the tumor board. The other two I had appointments for, the New Surgeon feedback was hanging on WAITING for him to call. What stress?

So FIRST was the ND ocologist who surprised me in saying that the scenario of biopsy-ing SPOT during the colostomy takedown/fistula repair surgery and removing a section of my liver IF it's malignant spells a really good chance of FULL SURGICAL CURE. (WHOA. I like the sound of THAT!) So we didn't even really talk about what alternatives we'd use if they didn't deal with my liver. She said HAVE all the surgery, she'll help me RECOVER.

Second appt was the psych nurse. Because I'm on pins and needles waiting for this official feedback, she pronounced me as being severely anxious. Gee, y'noticed, huh? And suggested that NEXT visit we start working on de-fusing visual triggers that may make it really hard for me to go BACK into surgery again. Unfortunately the next visit isn't until Dec 5.....and I waited and waited for this CALL.

It finally came at 5:30PM on the Wed before Thanksgiving. Yet AGAIN, never saw this COMIN' ......He laid out THREE priorities in this order....FIRST is the fistula. We've GOT to get rid of the Sewer Rat or I'm never getting any better. But he's concerned, now that he's also conferred with someone who was in on the earlier surgeries that my abdomen is SO 'hostile'....full of adhesions and scar tissue, that the fistula project may take hours and be seriously difficult. But if it isn't, THEN we move onto the SECOND PRIORITY which is the LIVER....biopsy, results and then either a LOBE-ectomy or perhaps something less invasive if they can pull it off.....then and ONLY then, if they think I can take even MORE surgery, will they POSSIBLY deal with taking down the colostomy and re-connecting my large intestine. Yeah. It was like being hit by a mack truck. You mean I could go through ALL of this and wake up and STILL have a colostomy?????? No, no, no, no. And, he added rather casually, if they can't 'get to' my liver, I'll just do a round of chemo and we'll take it from there. I couldn't find any voice to holler HELL NO.

So I cried. A LOT. Just curled up on the couch and wailed. The THOUGHT of coming through this YEAR with everything I've been through..... and THIS could be the outcome???? And I have to GO INTO surgery having NO idea what the outcome will be???? OMG this is totally impossible.

After awhile and a lot of tissues, I got ONE wit about me, anyway. We CAN'T do it this way. He HAS to do the fistula AND the colon together. I have one tiny hole in my belly which produces (copious quantities of) two VERY different liquids. The thin liquid comes directly out of my small intestine and burns my skin like all hell. The OTHER 'substance' is thick and snotty and comes from a TUNNEL that tracks towards the unemployed section of my large intestine/colon and THROUGH which IN all this glop have come three surgical staples already. I DID manage to explain this scenario to him over the phone and although it's the second time I've gone through this, it's like he never heard it before. Again he said that he just doesn't think the staples are any issue. I'm sorry, I'm the INHABITANT of this body and I know they are. My body goes into major alarm mode when one of them gets loose and has conniptions until it comes through and then everything quiets down again for awhile. If he CLOSES that hole and doesn't deal with that tunnel, I will build up glop in my abdomen and I'll be in SERIOUS trouble.

We just have to talk this over from the top again. I am SO fried.

This morning, I found myself wanting to tell him 'DO IT ALL' Don't worry about whether I can TAKE it. If we know one thing about me by now (and he DOESN'T yet know me well) it's that I can TAKE a hell of a lot. DO IT. DO IT ALL. I don't care if it takes all day. Just PLEASE take me to where I can HEAL. Repair all the damage and give me my body back. I'll take it from there......

[anita]

It's a lot of news, info and options to assimilate, decisions to make, people to talk to. Couch time plus tissues? I can understand that! I am sorry to hear about the spot, and the long list of potential surgeries. I hear ya on being able to take a lot, though it doesn't make it easier to feeeeel excited about. Hang in there, keep your spirits up, and ask the angels for some Help over your way! *HUGS* <-- the biggest, softest, gentlest, most LadyB-nourishing hug in the world

[coyotemist]

Maybe a 3rd opinion is in order? Mark Whiteford, at the Oregon Clinic, up here in Portland.

Hugs and love and so many prayers for you. Asking the Gods and Goddess's...no more shoes for LadyB, please?

[bluebirdmama]

Hugs, Prayers, and Love your way!!!

[Lady Alinor]

I'm thinking OHSU.

LadyB, when you go see the surgeon leave your kidgloves at home!

Interview all of his nurses and assign one to your case. Nurses are first and foremost your best advocates...next to yourself of course.

[coyotemist]

My husband has an unusual intestinal issue, and we've ran into several docs who didn't even know what we were talking about. He's been to OHSU, and we weren't happy, not to say that someone else wouldn't be happy though. Dr. Whiteford was the first we'd found who knew what we were talking about, and actually had done the surgery my husband had.

[LadyB]

Well I DID go back and talk to this surgeon and I don't think I've ever been so DIRECT in my life.

I went in armed with very clear photos of the two TOTALLY different fluids that drool (and sometimes gush) out of this one tiny hole to CONVINCE him that he can't 'fix THE fistula' without dealing with the tunnel. He already knew that. He plans to go in BELOW the wound to see just how impossible it's going to be to get to where he needs to do the repairs because of the possibility of 'massive adhesions' like there were a year ago. I had seriously grisly photos of some of the 'tricks' Stella has done when she prolapses to convince him that this 'if we get to it' colostomy is not a NORMAL colostomy by any means. He got it. He said he WANTS to do it all at once, he DOESN'T want to open me up again, but he HAS to make that assessment once he gets IN there. I asked him right out: "What would make you STOP?" He thought for a second and said that if he wound up clearing adhesions for 6 or 8 hours, THAT would not be a safe place to remove a section of my liver or do anything more. OK, I hear that.

This guy is GOOD. He has a stellar reputation over there and yes, it's the NURSES who I most listen to. They know. I don't need 'warm and fuzzy' from this guy. I need the BEST surgeon I can get when we're all in that OR. He specializes in colo-rectal issues. He knows this stuff. And this reputation includes doing things that other surgeons can't quite pull off. And he's bringing in a Liver Specialist who also specializes in minimally invasive procedures who is coming in on his day off to do this.

I also asked, yet again, that he NOT leave any staples inside me and he clearly said that if he can possibly avoid that, he will. HOWEVER.....there are certain circumstances that just totally require them. But if he can do it all with sutures, he will. If he can deal with the fistula and the tunnel AND take down the colostomy AND have the liver specialist deal with the 'spot/nodule/tumor' on my liver, he WILL.

So it's scheduled for Dec 23. I'll be the only one scheduled as he needs to allow for my being in there ALL DAY.

When I went to 'scheduling' to sign off on stuff, only THEN was I presented with the abdominal surgery PREP I have to go through. See, the other two major surgeries were screamin' emergencies, so there WAS no prep, and the one in June was not intestinal. I have to drink 8 oz of Magnesium citrate AND I'm to have nothing but clear fluids for the entire day before surgery. Whoa! Folks! I HAVE A HOLE IN MY SMALL INTESTINE!!!! Everything is just going to pour right out of me!

The more I thought about it, the more upset I got. Then a friend wanted to know WHY they're not taking me in a day early to do the prep IN THE HOSPITAL??? Duh, never thought of that. So I've been ASKING for the past week, and everyone I talk to agrees that's the sanest thing to do, but this surgeon has to be the one who 'writes the order' for that to happen and he's been in the OR constantly all week long. I have promises from nurses and office staff that they will TACKLE him when he's due to be in the office tomorrow afternoon and get the answer. THAT will soothe my nerves a LOT.

Yeah. Let's do this prep IN HOUSE. As a matter of fact, let's do the 'clear fluids' via IV so everything doesn't spray out of me. For THAT matter, we might as well do the abx via IV while we're there. I'll still have to drink the Mag citrate, but shrieking diarrhea is the ONE place where one is ok having a colostomy whose 'pouch' will just need EMPTYING (a lot) more often.

And the stress on me, merely being 'taken' to the OR early the next morning, will be MUCH easier than wringing myself out alone at home and then having someone drive me to the surgical waiting room and starting from there.

In the MEANTIME....guess what came out of me on Monday? A-yup, a FOURTH staple! THAT explains why my entire body has been in an utterly inflamed uproar for the past two weeks. Alarm mode. Wound-wise, things have now calmed down considerably. If we can keep it that way for the next two weeks, that would be grand.

You'll be able to track my journey by going to www.peacehealth.org , clicking on 'surgical patient tracking' and then clicking on Sacred Heart at Riverbend. Even if I can't get my exact patient tracking number up here, you can still watch where "DeHaas" is on that day and see when it starts, when it's done and where I wind up (surgical inpatient south or ICU)

The way I look at it, if I can just live through the prep, then MY JOB will be pretty simple on the 23rd. "Lay Down, Don't Die." HE's got the hard work. In the meantime, any of you looking for some focus, let's SOFTEN these adhesions and why not, while we're at it, how about let's make "SPOT" biopsy back as BENIGN.

I'm HOPING for that Full Surgical Cure so I can have my body back and get on to HEALING. As Gail coached, if for any reason it ALL can't be done at once, I'll STILL be in better shape than I am right now even if he only gets rid of the oozing fistulas. To lose all this endless daily bandage stuff would raise my quality of life considerably. Sure, I'll be bitterly disappointed if I wake up and Stella is still with me.

Dec 23 is a GOOD day for this. A bit after the solstice, so the days will JUST start getting longer by a minute here and there, and a day BEFORE a NEW moon, when I'm less apt to have a bleeding 'high tide'. And Mercury turns direct on the 13th (anyone recall that LAST year, for the really BIG horror, Mercury was retro and we had a FULL moon WITH an ECLIPSE? I was toast before I ever got in there. What's another Christmas in the hospital? Hopefully I won't be on a ventilator in ICU like LAST year.

So, assuming I go in on the 22nd.....FOURTEEN more days, FOURTEEN more days.

[anita]

It sounds like you made your concerns very clear. I chuckled over the photographs that you brought in. All the very best, LadyB. Praying for you and your elected focus areas.

[coyotemist]

Chickweed for the adhesions? I don't know if there's enough time...

It's hard to even put to words my thoughts, and deep deep wishes and prayers for you. May the adhesions be minimal. May there be time for stella to go away. May the surgeon be rested, and have good assistants also on their game that day. May you end up in post-surgical ward. May your body work well with the procedure. May the liver specialist get in there and go "Aha...it's just a blah blah blah, not a blech.".

So Mote It Be. Amen. Blessed Be.

[LadyB]

HAH! Yes, yes, yes....I'm ALL for 'bla bla bla and not blecch'!!!
And yes, as I pulled out the photographs, I said to said surgeon "I bet you hate it when patients bring visual aids......" But he LOOKED at them.

It is an ASTONISHING difference in thinking "I need to get READY." rather than "Is this EVER going to STOP?"

And absolutely, work on BOTH surgeons as well as the nurses and anesthesiologist. Like I said, I have the EASY part.
LadyB

[LadyB]

Yeah, well, NOT SO FAST.......yet again.

I JUST found out the surgery is now pushed off to Jan 6th OH YEAH I cried. That THIRTEEN more days felt SO good. And it just got yanked away. So much for right after the solstice/right before a new moon. I was SO not prepared for this disappointment.
I'm not handling it well.
The REASON is so the surgeon will BE THERE on the day before when I'm admitted. He can't be on the 22nd.
The threads I find myself clinging to are so, SO thin......
Wound care was miserable today which REALLY didn't help. In a matter of minutes (I NEVER get to know when this is going to happen) the bright yellow, caustic liquid came FLOODING out absolutely soaking through not only the bandages, but the entire abd pad, BOTH belts AND got all over my clothes. Terrific. I get a MONTH MORE of THIS misery.

I'm fried.
LadyB

[coyotemist]

Oh, hugs, how awful. I'm so sorry!

[Jadeswan]

((hugs)) I'm so sorry.

[LadyB]

OHHHHH yeah. That really took ALL the wind out of my sails for DAYS.
I'm all out of bounce.
So I got back up to my feet......SLOWLY.
It's odd, but I find myself being more and more PRESENT in the most literal sense. Today is just today and that's ALL I'm going to deal with. I'm NOT counting days. I'm just dealing with TODAY and what I need to try to do TODAY.
Last Saturday I noticed that the STUFF drooling out of the hole in my gut had FINALLY eased down. Oh, that's right. This is what NON staple-alarm-mode 'normal' is like. I can go hours without HAVING to change the bandages. (but a sudden flood could hit without warning at any time). So I bravely took off to the glorious Holiday Market (that I was a vendor at just ONE single day last year). It was GOOD to visit vendorfriends I haven't seen in ages. I collected gentle hugs and lots of choruses of "I'll be thinking of you" 's for the Big Day. I lasted 2 hours with one visit parking me on the stool at a friend's booth. Came home and totally collapsed in bed for the rest of the day, but I was happy.

For all I thought I was to be 'off the hook' for Yule holidays.....uh-oh, I have KNITTING to do.

I feel like I'm looking rather neutrally at the game board now. The way this year has gone, and as my abdomen certainly is The Land of Surprises.....sure, there's pretty good odds this next surgery won't go the way I want it to. But deep in all that is still the POSSIBILITY that they'll do it all and I'll WIN this one. Haven't let go of that either. Right now I know enough NOT to be attached to either outcome.

When things got REALLY grisly back in the hospital and I just couldn't get ANYthing to 'happen', I learned to shift into "What does this CHANGE?" which just pushed me into observation mode which really helped.

I cruise through my emails every day and sorry, gang....Greenpeace is just going to have to take care of themselves. Go Occupy-ers, but without me. Politics doesn't get a CRUMB of my focus or energy. I don't wail when insurance/suppliers let me run out of bandages for crocheting potholders out of all the red tape. I just go out and buy my own. I know enough not to stress myself out with running low.

At some point in January, things will CHANGE. Within that is the potential for lots of possibilities. That's about the best I can do right now......LadyB