LadyB's dance with cancer

[anita]

Keep dancing, LadyB!!!! I am truly inspired, and awed, at your strength and wisdom. May you be well, well, weller!

[LadyB]

Welllllllll, I'm still WORKIN' on it......
So let's see where we left off.....Things have been RELATIVELY uneventful since early October except for passing a THIRD surgical staple through the wound. Everyone shrugs it off as 'not an issue' except for the way my body DEALS with it.....The output from the wound increases hysterically, I FEEL absolutely hideous with aching joints and unhappy lymph glands. It got SO bad the day the staple finally appeared (and of course I never KNOW that this is what is happening, I just feel TERRIBLE) that I was changing soaked bandages every HOUR. The wound was deep, angry red and hurt like all hell. I've been MIZABLE. Amazing Gail has been turning herself inside out trying to help. I have every ointment known to peoplekind.....three days after it came through, things calmed down some and I had made a very difficult appointment to cultivate a NEW SURGEON. I think I made a good choice. Although I feel just horrible saying 'no more' to the surgeon who's been working hard on me all year, I HAD to do it. I had to change SOMEthing. The new surgeon didn't NEED all my angst and hand-wringing, he quietly wanted to focus on what we're looking at NOW.

THERE's a nice concept.......NOW.

He reviewed the CT scan from May, inspected the wound, told me that the NEXT surgery IS going to be really tough just getting IN, because the fistula has made this fortress of inflamation all around it. He decided we need to do a new CT scan NOW. I began tearing-up about the concept of the colonoscopy through my stoma and how I CAN'T do the purge beforehand because I have a HOLE in my small intestine!!!! He softly stated that he sees NO reason to put me through that. We should be able to see all we need to with the CT scan, AND, he assured me, there would be NO pumping contrast dye in through the stoma like last time. (THANK YOU, THANK YOU, THANK YOU) And, of course, this CT will re-visit that SPOT on my liver which may be absolutely nothing, or MAY be a sign that the cancer has already spread.

This all happens TOMORROW. I don't hear the results until Nov 15. Very, VERY stressful. At best, I will try to get my liver to Smile For The Camera. I do have to go in an hour and a half before my scheduled 'study' in order to drink EXTRA dye (yum, yum, blehhhhhh) - the thin stuff, not the thick white junk - because he wants to be SURE we can see EVERYthing we need to. Hey. If it means no more catheters in Stella, I'll DRINK.

So, depending on the results, we MIGHT get this show on the road earlier than January. I like the new surgeon, he's 'very, VERY smart' according to any number of nurses on the surgical floor. Somehow I feel that he'll be able to deal with whatever he unearths by 'opening up the land of surprises' again. He's a colo-rectal specialist and also ON the Tumor Board. I NEED to feel that way or I can't go back into that OR for what will be (counting all the abdominal wash-outs) the ELEVENTH time. If the liver-news is BAD.......well, I'll jump off that bridge when I come to it. Gonna be a LONG week waiting for an ANSWER.....

We really are closing in on a YEAR since this all started with the first intestinal obstruction. I've not been 'back up to speed' in all that time and I feel it. For someone who has ALWAYS been out gardening, dancing, just moving ALL the time, it's been sad to be so immobile. But boy, I change a mean bandage.

I do get depressed. VERY depressed. St J's tincture USUALLY takes the edge off, but not always. Last Saturday was absolutely brutal. I honestly wake up every morning WONDERING how I'm going to feel today. My appetite is good, although I can't quite get back up to 125lbs. My nails are strong and my hair is coming back in. Unfortunately, I can no longer get a new partial front denture re-done even if I could afford it. The tori (look it up) that I went through hell and spent $1500 uninsured dollars to have surgically REMOVED so I could HAVE a denture to replace my four FRONT lower teeth almost 4 years ago.........are.....growing.....back. So NO denture will not hurt. Best I get used to my face. THAT little gem seemed truly unnecessary, y'know? Enough already.

But for now, I need to convince myself that tomorrow won't be as bad as the LAST CT. Just need to show up and drink the stuff. Then somehow get through the WEEK before I know what they found. Ah well....... deeeeeep breath.

[Cat of the Moonlit Wood]

I feel good about the doctor change. It sounds like a good plan, and having a fresh brain and hands on the case sounds like a good idea.
Good luck tomorrow! You know you will have all sorts of folks sending happy thoughts and good vibes your way.

[coyotemist]

LadyB, I didn't know you were "shopping". If for some reason this surgeon doesn't work out, there is a surgeon up here in Portland who is excellent, at The Oregon Clinic. I hope it does work out, and they can get you fixed up. Good luck with the scans tomorrow. You have been through too much!

[Azure Star]

Lady B, I have been following your journey and I think you are amazing! Thank you for sharing your knowledge on Lyme and self testing. Hang in there and please be gentle with yourself - I will be praying for your complete recovery. ((((HUGS))))

[LadyB]

Alright, let's look at this CT scan here. I went in totally calm, ready to drink what I remember as 'not being so bad' last time. Oh well on THAT! Since I ask to have the dye mixed with plain water to avoid the artifically sweetened fake lemonade they mix it with, THIS stuff TASTED like iodine. Blecch. I was told they were using a new supplier and it did taste somewhat different. Immediately upon drinking it, my cheeks flushed bright pink. I pointed it out to one of the scan techs as a possible PRE-reaction and of COURSE everyone said they'd NEVER seen anyone do that before. Yeah, well, welcome to ME. I did manage to drink two HUGE paper cups of the horrifying stuff with my cheeks getting darker pink, but no itching or hives, but I was WORRIED about the IV injection. The tech doing my scan said he was ready if I DID have a reaction, but felt confident that I wouldn't (based on WHAT???) If this wasn't such a really IMPORTANT SCAN, I would have said to forget it. The injection only caused the 'normal' heat sensation running all over my body and faded quickly.

He did 3 scans. One without the IV injection, one with and then another encore scan of my (hopefully smiling) liver which should have been done LAST time to see if anything that showed up on my liver was REAL or just being silly. Things come and go on livers all the time.....

But DURING the scan, I could feel Stella getting all KINDS of busy and by the time I got OFF the table and back to the dressing room, her bag was FULL and my bandages were soaked. I scooted straight to Amazing Gail's office who only knew I might be coming for a visit after the scan just to tell her how it went, but now I needed an appt to change the bandages (I need to be lying down with LOTS of supplies, which I BROUGHT, but the lying down thing was a little hard to pull off)

My body was having FITS. Stella had the shrieking runs (one of the ONLY times to be grateful for a colostomy - all in the bag), the SewerRat was SO hysterical it was blowing bubbles and yellowish liquid was oozing out of me constantly. What a mess.

I had to empty Stella again before I left, we put on the larger-sized bandages and I started the half-hour drive home (yeah, in 5:30 rush-hour traffic). Once home, dinner was tea and toast and I was sound asleep before 9pm. Woke up at 2am for no particular reason, had more tea and toast and slept from 4am to 8am. I am WIPED out.

I spoke to my older sister (keeper of the Family Allergies) and she said DEFINITELY, the red cheeks thing is a pre-allergic reaction. Definite warning signal. I'm going to call Oregon Imaging and find out EXACTLY what is in the drink as I may have been reacting to something other than the iodine. I was told that the NEW IV injection has the iodine molecules bound to a larger molecule to 'make it more inert' and so cause far fewer reactions. But I'm thinking this was my LAST CT scan with contrast dye. Next time, I could go right into anaphylaxis.

So. I'm taking it very EASY today, not asking much of myself. How much RECOVERING can any one person do?? So now I WAIT until next Tuesday to discuss the results with the new surgeon (who, btw, is the medical director of surgery and trauma, a colo-rectal specialist and on the tumor board, so it was a solid choice, not really 'shopping'. I do feel confident in him. And Tuesday we'll come up with a PLAN.

Let's hope my liver SMILED for the camera!!
LadyB

[Jadeswan]

Big (very gentle) hugs, Lady B!

[coyotemist]

Sounds like unpleasant business, for sure. Did you have any osha or anything with you? Glad you are able to rest.

My oldest has to have a huge colo-rectal surgery sometime in the next 10 years or so, and we are planning on the guy here in Portland, but nice to know there is another very very very qualified guy somewhere in the state. A lot can change in that time, but I figure the universe will send us where we need to go.

And just a side note...I sure hate that IV injection that makes you think you are peeing your pants.

Hope there is good news all around, especially on the liver. Beautiful thoughts, hopeful images.

[LadyB]

Funny, I ALWAYS have Osha 'with me' but having it suggested that I lock my 'valuables' in the car, that's where it was. I thought about it A LOT. I did stop and grab it on my way to Gail's office JUST in case things got REALLY crazy, but instead of the swelling reaction I know as anaphylactic, my body was doing a GLORIOUS job of GET THIS STUFF OUT OF HERE!!!!!

I did call Oregon Imaging and a tech called me back and was more than happy to recite the exact ingredients of the "Gastrograf" which they are legally REQUIRED to use now as the government forbade them to use the other stuff that had no anti-microbial in it to protect us from MOLD. (what?) He said if I have a genuine concern about the iodine part of it, there is a barium drink (thin, not thick) they substitute for folks who are genuinely 'allergic' to iodine. Gawd only knows what's in THAT.

I have truly spent the day in bed. Only get up to make food. Ridiculous that I'd have to spend a whole DAY recovering from a CT scan, but it was rough and my body took QUITE a hit. So serious resting felt like the wisest thing to do......Hopefully I'll be back to the land of the upright tomorrow.

[coyotemist]

I have truly spent the day in bed. Only get up to make food. Ridiculous that I'd have to spend a whole DAY recovering from a CT scan, but it was rough and my body took QUITE a hit. So serious resting felt like the wisest thing to do......Hopefully I'll be back to the land of the upright tomorrow.

You know, in the whole scheme of things, it's not JUST a CT scan. It required an IV, it required you to get out of your house, drive to town, and do this thing, which from the tone of your messages, you are still doing a lot a lot a lotta healing work inside. You had to see Gail afterwards. You had to drive home, all the while your body is rejecting that crap. On top of it all, there is so much emotional involvement when you know your future depends on these scans, but you are dependent on someone else to tell you what they say, and then waiting for the appointment to get the official readback.

So, it wasn't just a simple CT scan. You did what you needed to do, caring for yourself.

Hope you can see those wonderful grandbabies of yours soon, and get some young energy.

[crystal woman]

Let's hope my liver SMILED for the camera!!
LadyB

Indeed! Here's to smiling livers, I hope yours had a big grin on it. I hope you have a restful weekend LadyB.

.

[catoosh]

Dear Lady B, have followed your dance with cancer for a year, my heart thuds with the pain and emotional stress that has been your lot for a year, I'm holding your hand and gently massage your heart with ever good wish, sending rainbow healing and smiling thoughts across the ocean, hugs from 'down under'

[anita]

*Hugs* LadyB!!! This too shall pass.

[LadyB]

and it looks like the dance will GO ON, I'm afraid.
The SPOT on my liver is still there and 'minimally' bigger says my new surgeon.
I was NOT expecting to hear that today. Wow.
So the PLAN is to consult with his colleague, a liver specialist and also with the Tumor Board and see what EVERYone thinks is the BEST way to go about this. Either there will be one horrendously HUGE surgery to take down the colostomy AND re-section the fistula out of my SMALL intestine AND go on an adhesion hunt AND clean up this huge scar......AND biopsy the spot and possibly remove a good chunk of my liver......or there may be TWO more surgeries. One to do all the repairs and another later to deal with my liver.

Did I cry all the way home? Oh HELL yeah.
He'll call me next week with THE PLAN.
I'm FRIED.

He knows how I feel about Chemo, he knows I'm working with an ND oncologist and is fine with that. He knows I know MY body, and I need HIS knowledge and experience. I feel that he DOES listen. He even wrote down which days mercury is retrograde (Nov 24 - Dec 13) to take that into consideration for scheduling the surgery. Dec 16th might be it. I know that hacking out the offending parts of me is not a CURE for cancer, so I'm all ears as to what my ND oncologist's PLAN for this scenario is. I just so wanted this to be OVER......one more 'put me back together' surgery. But no. Not so fast.

So that's where I am, giving myself yet ANOTHER day to 'recover' from yet ANOTHER hit before I expect too much of myself. Got "Chocolat" from NetFlix (seen it, but really, talk about ComfortFood).....

LadyB

[coyotemist]

Hugs, and tears for you, and so many healing thoughts. Just thinking about Step 0 Step 1 of the rivers of healing...

stories, meditation, rest, prayers, tears, patience...