Thanks guys.
ugh, so second treatment down, they almost didn't give it to me, my counts were so low, but a shot of procrit and a shot of neuprogen helped that along. I got disconnected from chemo sunday afternoon.
and now the cramps have started back up. I am taking the bentyl again, and it hasn't gotten as severe as last time, but it damn sure isn't any fun. it hurts. i imagine like labor contractions or something.

yesterday i spend all day in the doc's office getting iron infusions (looked like a huge bag of iodine being pumped into me.) which is supposed to help me chronic anemia, and i guess therefore give me more energy, but i could so easily crawl into bed right now. didn't wanna be at work today. blech.

chemo sucks.
cancer sucks.
side effects suck.

Becca,
My name is Carla. I know you talked to so many people in Baltimore I don't expect you to remember me. I asked about your k-pouch. I actually went to Dallas for the surgery and ended up with a colostomy because of massive amounts of scar tissue. I was diagnosed with stage III rectal cancer in 1999.

I am thinking about you so much. Chemo sucks so bad! Just know there are many people sending you healing vibes...can you feel them?
tee hee

Hey Becca,
How are you doing???? Sorry for the prolonged silence but I had a few minor concerns going here.....as for the shrinking stoma...the chemo 'dries it out' litterally...you can try extra lub or the famous olive oil trick (who thought taht one up???it is really great!)Chemo dries out all mucosa so the stoma suffers like the rest (mouth sores? vaginal driness..etc)so keep it lubed all day long and use extra when intubating, oiling the tubeis great too and you might want to try (ok, I know this sounds silly) 'plumping lip gloss' that is supposed to replenish the moisture in your lips it comes in glosses and lipsticks so you can pick the colour!!! as for the gravol, yes it is dramamine but buy the chewable or liquid kids doses, I find that they work better and are easier to absorb than the tablets. Have you ever irrigated your pouch with warm water and sea salt? it works on sores and diareah...I used grey, all natural sea salt mixed with luke warm water, it remineralizes well and can ease the cramping too ( old grandmother's remedies)just don't use too much too often, once or twice a day is fine....
And the ultimate anti-nausea, ant-dyhydrations, and anti burp, gas and cramping...in a large water pitcher add fresh mint leaves and cut up fresh fennel (the vegetable) (fenuchio in italian) and a well washed lemon cut in quarters and squeezed into the water with the lemon thrown in for good measure..fill with water and keep in the fridge...drink the water regularly, especially when feeling really sick...you can take it to work in a thermos too and you can keep refilling it for a day or two then eat the fennel, mucn the lemon and start all over again I used it on a very sick french doctor who was pregnant and couldn't take anything else...it works wonders...
And above all know that I am send all of my love and hugs and hopes for you to get through this stuff and for us all to have a healthy girls trip to Paris!
Hang in there
Sharon

Hola guys!
Thought I'd check in here. let ya all know i'm still alive (pff...what sick jokes just ran through my head there)

Anywho. so chemo sucks. Balls.

Thanks for the suggestions sharon, the mint/fennel/lemon water sounds really intriguing, I may have to try it. As well as the sea salt irrigation idea. I think i'll pass on using lip plumping gloss though...er...i dunno, just seems odd to me.

I do lubricate, a lot. I definitely don't skimp on the ky. But I really didn't like the olive oil idea when I tried it (admittedly I tried in a pinch one day a year or so ago, but thought it wasn't any more effective, and just a huge mess. but i guess i just didn't have any finesse)

in terms of where I'm at, i have my fourth treatment this thursday, and then i pause to get scanned again and figure out where to go from there. (more chemo? surgery? nothing? heh..i should be so lucky)

I'm pretty exhausted. I find I can muster energy to do maybe one activity a day. yesterday it was my nephews first bday. the day before my friends opening to her solo show. etc. etc.

i guess i'm dehydrated. despite my attempts not to be. (never got that 'stamina' stuff, couldn't find it around here)
I think now my levels of magnesium, potassium and calcium are all pretty low, causing my feet to cramp up and spasm. it's really wierd. my doc is looking into my bloodwork from friday to see if i can get a magnesium infusion. although i'm also trying to avoid things which can cause more stomach upset and cramping.
eh.

so, its' been rough. of course. and i'm looking forward to getting this fourth one over. i'm so tempted not to. it'd be so nice to be done with this. but...i'm fighting. so i guess it's "bring it on" for now.
pfff...

Hi Becca,

Just been catching up on your blog. I have to say that for someone going through so much cr*p you can still bring a smile (and a tear) to my face. You are my hero!

I hope the fourth lot of chemo is a little kinder than the other 3 have been. Be nice to yourself.

Luv & hugs

Shell

Becca
With all that you have going on, I am so glad you took the time to tell how you are.

I marvel at your strength.
Keep hanging in there.

I agree with all the others here, Becca. You have such strength! I am embarassed that I complain if my K-pouch bleeds a tiny bit; or if the skin around my stoma gets a tiny sore and itches. Or, if have some rare cases of pouchitis.

As Shell said, you are a hero.

I will pray for you.

John

thanks guys!!

Well, seeing as these days any little bit of good news is essential to my mental survival, thought i'd share my latest with everyone i can!

Firstly, some background:
In colon cancer patients they routinely test a marker in our blood called CEA (er..Carcinoembryonic Antigen i believe) that is often used as an indicator of reoccurant malignancies. Normal people have CEA levels of 0.5-2 (smokers sometimes more like 3-5)

now, this is why i'm back in this place to begin with b/c my CEA was tested back last august it was 0.8 and by Feb. they tested it and it was at 6. They tested it again a month later and it was 12. DEFINITELY not good. Hence why i got all the scans that found the cervix thing.
(for reference though, people with colon cancer have seen levels of huge numbers...my friend right now has a CEA of 91. which is ridiculous)

aaaaannnyyway, the long post all just to say that my onc. said my test from friday says my CEA went down to 7!! g'yeah! definitely movin in the right direction. means all this bastard chemo must be doing something right.

phew!

Well that's very encouraging! I'll be keeping everything crossed for you that it continues to go down.

Keep us posted.

Luv & hugs

Shell

Becca, I am sorry to hear this. You’re one tough person and I’m sure you can get through this. If I recall you had bad cramping during your chemo back in Jan’07(?).

Has the Imodium helped? If not my quick recommendation (I’ll explain below) for the cramping - try L-Glutamine (powder) 3grams in water in the am to reduce intestinal inflammation also try something called “Cramp Bark” extract – both can be found at health food stores or vitamin shops. Flush the Gatorade and seek alternatives to re-hydration and restoring electrolytes that don’t include sugar – natural or chemical!

Also avoid too much protein (like those protein drinks) – sugar and protein – tumors love the stuff. JaniceM makes a good point with the sea salt and the potassium!

I went through similar side effects from the folfox chemo in early ‘07 – progressively worsening dehydration and cramping. Not one GI surgeon or GI Oncologist between NY and Philadelphia could explain why I was experiencing the cramping. All CC had to say was "you may have to have loose the pouch"…screw that!

The problem is we pouchers are blessed/stricken with this pouch thingy and mainstream medicine doesn’t have any data on us and without data most docs won’t even take a guess.

It was the nurses who made the connections for me - that cramping results from and can be the 1st sign of dehydration. Have you been scoped since the cramping started? My xrays and scoping turned up an inflammed intestinal and pouch lining so no matter how much I drank I was unable to absorb itt - just pass it thru. What WAS clear was the chemo was irritating the hell out of my post surgical small intestine.

I finally quit the chemo and went to the dark side to seek the care of a Holistic practioner. I am not recommending you take this risky step (I am guessing surgery is an option?) but maybe one of these types may be able to at least help you with the side effects.

Hang in there and keep us posted.

Peter

Becca,
The Stamina is en route!
I hope it helps you as much as it does Chris. He only uses 1 a day, you may want or need 2.
Start with one and see if it helps, try 2 if you think you need it, it certainly won't harm you!

There's one option for recovering from dehydration I forgot: depending on your insurance plan and with your onc's perscription you may be able to have a home care nurse hook you up (or train you - its easy) to an IV drip (plus stand) for the night(s) following the ipod going empty but before the needle is pulled from your medi-port. It could be set up next to your bed and in one night it can put a liter of fluids back into you. You can then unhook the empty bag in the am and have the port de-accessed as you normally would.

No recent news from you Becca,
How are you doing and how are you holding up?
Lots of warms thought your way and hope that this is really the last time that you have to go through all of this hell.
Sharon

Becca,
Just a side not on the dehydration issue, when Chris had the problem last year he had alot of trouble intubating. Once he started the stamina he hasn't had any problems and needs less ky, really doesn't use it every time.
Next week when you start taking it you should see a difference in intubation, the stoma actually dries out when you dehydrate.Benadryl dried it out too.

peter,
wow, thanks. that makes alot of sense. I know that the cramping is partly from the diarrhea, and i guess not a far stretch to think it's dehydration as well.
i didn't read this in time to get the IV drip, though i have done that in the past whenever i go in for scopes, I always tell them to give me an extra bag of fluid while i'm in recovery. Because i always get mildly dehydrated for those things (i'm talkin upper endoscopies mainly. when I can't eat or drink for 6 hrs)
I haven't had my pouch scoped since january. I don't trust anyone but Fazio to do it...well...i may have to change that attitude now. But since the focus has been on my cervix, the pouch scoping hasn't come up.

This treatment I just had (got disconnected saturday) was just a bitch. I mean, I was fine while on it. as usual. But now the cramps are starting up again. and lucky me,left my medicine at home. but in general, i'm just wiped out. i'm sooo exhausted.
and it seems my tongue is being affected. Its not full blown mouth sores or anything, but my entire tongue is kinda itchy and sorta feels like i burned it on something hot. its fun.

but, i got some good numbers on my tests (my CEA dropping to 3.8 from where it was at 12 when i started...that's great) and i'm hoping that'll mean i wont have to do more. of course. i expect the worst and hope for the best.

i can't wait to try the stamina. and really hope it helps. now that the fourth treatment is over, i'll just try to heal from here on out. til surgery time that is