Starting Chemo May 2008

ewesterman

Otter...you are so totally in your element tonight!!! I like the whole cock gun ...I mean caulk gun concept....and yes you become a bar mitzvah. You rock. Rock rocks. Jen, feel better soon...it will get better. Love you all. Gotta' get to the movies....speaking of movies....okay, more on that later.

ewesterman

Otter...you are so totally in your element tonight!!! I like the whole cock gun ...I mean caulk gun concept....and yes you become a bar mitzvah. You rock. Rock rocks. Jen, feel better soon...it will get better. Love you all. Gotta' get to the movies....speaking of movies....okay, more on that later.

kerry_lamb

Jeano that pic was enough to make me reach for a thick jumper! It is picture-perfect Tasmanian summer weather here..and against my almost fanatical practices I GOT SUNBURNT! I hate that..it happened so quickly. Hub and I had a lovely weekend 'flash camping' in our shed at the beach. It was just awesome. We came home today but I'm heading back there tomorrow to start lining out the 'loungeroom' area with really pretty pine ply sheets. Re boob-jobs: girls it's a horror, but it's amazing how we just tough it out. I'm so happy I had mine done. I particularly love just pulling on a beater and getting on with it. (No enormous bra..no enormous fake boob..). Julie, I'm sure your op will be just fantastic. Jen..hang in there! It will get shiter before it gets better. My right one is a bit misshapen, and I have no nipples. I don't know about 'revisions' and nip surgery. I feel as though I have spent enough money on the fecker cancer. It would cost be another 2 or 3 thou to get things perfected. I'd rather spend it on the shack, to be honest. Or on a gold-standard weight-loss program! Why oh WHY does me waistline keep growing??????? XXXX to you all. My besties

Sable

Thanks for the encouragement ladies, there are just some days I just want to sit and cry and ask why did I ever do this? Yesterday was an interesting time. The drain holes left over the doc said to put gauze over them to cushion them from the binder. Not a biggie, found some that was even none stick. About midmorning one hole was absolutely killing me so I added a bit more cushion and kept on going. By last night I decided to investigate what was going on. Turns out my original gauze pad had worked itself down into the hole and had got stuck (so much for non stick). I had to soak it out. Talking about a huge relief afterwards. It got a bandaid instead.

rock

Caulk/cock gun! In pink!  Yeah, probably not the sex toy one would expect to find in the nightstand...

Jen: I am concerned. I do not think you are complaining enough.  LET 'ER RIP, GIRLFRIEND.  DO NOT HOLD BACK!!!!!  you are in safe space here, and nobody is going to think less of you if you completely let loose!  Fevers, night sweats, fears of Frankenboob, drains, being less independent, hubby's fashion decisions...  Lay it on us! You do not need to be charitable!

I think I am going bowling today.

Sable

I'm holding back cause robin's surgery is next week and I don't want to freak her out too much. I'm sure my problems are just me but damn. Ok you asked for it..... here is a small taste...

On my tummy incision, on the right hand corner there is a leaky spot. A little leaky wouldn't be so bad. This started out like a flippin zit 2 days ago. I got out of the shower and hubby was helping me dress wounds and stuff just started pouring down my leg. Probably about 1/4-1/2 cup of fluids and proteins. Took about 40 minutes to get it to slow down. I stopped putting expensive gauze on it and broke out kotex instead. I am also using them as padding across my tummy for the binder.

My new boob size is close to a EE easily! And my real one is a large c I think. Doc keeps telling me to not even loook at it cause of the swelling and got very close in size. Please Lord let this just be swelling cause I feel deformed at the moment. And its not really anything you can hide either. He filled in under my armpit as well were they took out nodes. Under this boob a few days back I found a blister. He says it is very common not to worry about it. "It's major surgery". It went down a bit and now I found another one on my tummy this morning. they don't hurt just annoying that it is there.

Old boob......The seam underneath has split. And hurts like a MoFo. Each day it seems to split a bit more and he did not seem concerned about this either. I'm worried there is going to be a skin graft that will have to be done there. Otherwise the boob is very cute shaped.

Finally gone 2 days without major chills and shivers or high fever. Been running a low one but with as much as I have had done that is to be expected. Doc said tuesday the last drain is coming out and the fluid needs to be below 30..... I'm still getting 100 ish out of it. Hell if I knew how to make it less I'd be all over that in a heartbeat. I'm sure my problems are very common for him to deal with but Some are really bothering me alot. I'm gonna nail him down on tuesday, point at a spot and make him look closely. I still have all my staples at the moment they aren't bugging me as much right now. Plus today I am getting around a bit better. I'm seriously bored, and been trying to figure out what to use to wipe my beautocks while hubby goes back to work. I can reach the edge of the canyon but my donkey won't go down the trail.

On the good side I was able to stand up thru most of my shower today. That made me feel pretty good. :O) sorry you asked yet?

robink

Jen- how long did it take for the tum - boob to swell like that? Is your flap OK, healthy color and temp? And the "stuff" pouring out of your tummy incision, did that come after the drain was removed? Is it clear or looking infected? And why is it that the old boob seam is splitting? Why is there even swelling on that side?  Maybe I missed something, did he do a resizing on that side?Write down EVERY ISSUE, refuse to leave until each are addressed. Did you see this guy's before and after work? With all that edema and drainage you will certainly have wound healing issues. Is there a wound care clinic at your hospital?  If so, make an appointment.

And you don't have to worry about me being freaked out. I already am. Just don't have a lot of time to dwell on it. Ben working part time. Yesterday spent the day at the hopsital, DD had appendicitis= surgery = now recovering before need to return to college Thursday. I know a few nurses at the surgery center wheremy TRAM will be done. They tell me my PS work is very good, I liked the before and after photos. Mine will be slightly different in that I will NOT have a flap, there was enough skin preserved to place the skin expander to make room for the fat transplant.

My body better behave in its recovery cause in late March DH and I, Sister ans BIL are taking a cruise!

About the canyon, how about a squirt bottle for cleaning and a fan or a blow dryer?

Otter - Jan 11 is my day for body resculpting.

JulieC

Hey Jen - how about the plastic Swiffer handle with toilet paper wrapped around it?  I'll keep thinking.  I'm with Robin - don't leave the office on Tuesday without some answers.

Love you all - Julie

rock

"reach the edge of the canyon..."

Jen, Jen.  Your gift for words...

But JAYZUZ that does sound like a lot of aggravation!  And it is not like "Hmmm, is that a wet spot developing in my ceiling?" It is your body which is with you 24/7.  I support everything Robin suggested.  I have zero experience in this but . . . is there any benefit to asking another surgeon (or your surgeon's RN) to take a look?  I really don't give a rat's patootie how common your surgeon thinks all of this is... it is the first time any of it has happened to your body.  Glad you're going to force him to take a look.  And he can help you wipe your hindquarters, while he's at it....

Maybe a swifter with some of those flushable moist towelets (perhaps attached with a rubber band).-- it might maneuver better.    Or a Clorox toilet wand with the refillable head but use the Wet Ones. 

http://www.theimpulsivebuy.com/wordpress/2005/05/03/clorox-toilet-wand/ 

 
http://www.activeforever.com/p-1272-bottom-buddy-toilet-aid.aspx

http://www.activeforever.com/p-1272-bottom-buddy-toilet-aid.aspx  

rock

I am sorry that this has been so complicated. It sounds like it sucks. I hope you are all healed and feeling more normal  SOON.

robink

Jen - what's going on today? We're concerned about you!

JulieC

Jen - we will all be with you today, shovels at the ready.  Just say "when".

Love ya - Julie

robink

Jen - I second what Julie said!

Ya'll otta check out that bottom buddy toilet aid, ya never know when you can't reach your own canyon, or just to lazy to reach   (Good find Rock)

Sable

bring big shovels , two if u have them

KristyAnn

Hi Everyone,

Jen I hope you are feeling better and Robin I hope you have a smoother sail than Jen is having!

My body has finally made peace with this clinical trial- spent weeks (literally) fighting side effects and trying to get my potassium and magnesium levels back to normal. I have been dose reduced twice and am finally handling it without depleting my electrolytes.

Christmas was great- had some time off and enjoyed the family. College girl is headed back as we speak- she is becoming an RA at the dorm so she had to go back today for RA training.

TTYL

Kristy 

JulieC

Jen - how are you doing?  I hope you straightened out your doctor.  Just checking in to see if you are feeling better.  Let us know whenever you feel like it.

Sable

Thank you so much ladies for the phone calls! You don't know how much they mean to me. :O)

Yesterday~ got in the shower and the spot that was split open was hurting so bad all I could do is sit and cry, couldn't move that arm or anything. The area is just raw meat. Hubs helped me sorta get cleaned up and we headed for the doc. he looked at the spot and told me that I had popped an internal stitch but cannot do anything about it at this moment, I have to heal a bit more before that can be done. He did however give me some sauve to go on it, and oh man does it work awesome! I got my last drain out and by last nite I popped another leak. He said eventually they will go away nothing to worry about. Everything else looks ok, I have a few slow healing spots. Got out some staples and a few stitches. Hubby said he tried to put on his best "I'm pissed face" to get the answers out of the doc. And hubs is good at those lol. Doc was teaching another intern at the time so there was more explinations going on.

My leaks were soaking thru 3 taped together overnite maxi pads to I sent hubs to store for newborn diapers... they work pretty good. But I always thought I would be wearing diapers again when I was much older than this. Ah well such as life.

Thanks for bringing the shovel brigade ladies. I actually sat and was pictureing where each of you were standing in the room LOL. Overlook my typos..... I'm drugged still. slobbers and squishes

angelsaboveus

Jen so sorry you are having such prolonged yukkiness and pain with this ....sending healing thoughts your way and hope your days get easier !!!    

ewesterman

sigh

Dear Jen

I am sending healing thoughts to you. 

robink

Oh Jen - what an ordeal this has been. 15 days of H E double lockey sticks. To think of another procedure to fix the popped internal suture isn't what you or DH want to have to deal with.

Glad for the few slowly healing spots.

Going your way is healing prayers through God, cyberspace, slo motion through the atmosphere - how ever you can reach for them.

Robin

robink

Tomorrow I have my annual mammogram, have come to realize they will all be of the diagnostic variety due to my "history". Just want to make sure it is clear before venturing into the body resculpting theater Monday.

Saw a podiatrist today for plantar fasciitis, a funky toenail and a possible hammertoe. Came homw with a night splint for my feet, alternate shoe suggestions, 1/2 big toenail removed for a fungal culture and an appt for followup in 3 weeks (if I can drive by then)

Had a physical yesterday, fasting labs tomorrow. Not expecting any problems, just wanting to be sure.

A good friend is having a lumpectomy and bilat breast redcuctions tomorrow, going to hang out with he hubby and son while they wait. She is very against rads or chemo, won't do either without evidence there is no other way. Her DH in the oxygen business, acquired a home hyperbaric chamber, she has done 21 treatments in prep for tomorrow, plans to hop in as soon as they return home. They are encouraging me to take advantage of the hyperbaric therapy for increased wound healing and minimizing infection risk and I am considering it. (Come over Jen - we'll have an oxygen party). 

DD in her 4th post op day, appendectomy Jan.2. Improving daily but really wiped out today. See her surgeon Friday, DH and I will need to take her back to college Sunday, don't see her being ready for a 4 hour drive across Colorado.

lewing

Jen, I'm absolutely blown away by your patience and courage.  Really.  You're a saint and a warrior (as well as a hoot).  The thing that has me most pissed off on your behalf is that you should be DONE with all of this.  So: shovel at the ready, I'm saying: ENOUGH of this crap.

Robin, good luck tomorrow and Monday.  I'll be thinking of you.  (And at some point, we should trade notes on PF and funky toenails.)  One question: how in the midst of all this are you going to find time to drive your daughter back to college?  Sounds like a hectic weekend coming up . . . do take care of yourself.

Linda

(Edited to fix a typo.)

otter

I have been hanging back because I can't think of anything cheerful to say for you, Jen.  What you're having to go through is just plain sucky. 

Why can't our medicos just take care of it when things don't go right?  Leaks and gaps and popped sutures and raw tissue?  FIX IT, for pete's sake!!!  Fix it, and make Jen all better!  I can just imagine myself stumbling into the PS's office, maxi-pads and night-time Huggies taped all over my body (and all dripping with fluid), and saying, "Okay, you did this -- now, you FIX IT!!!"

I am so sorry that you are sad and you are hurting and you're so sick and tired of all this.  Thank goodness your dh is being such a good dh.  I can imagine him being sweet to you, and hugging you gently when you're feeling so frustrated.  Aw, Jen, I'm sitting here getting all sad for you.   

This will get better, though.  It sounds like it will be a longer healing process than you were expecting, but things will improve and it will get better.  We all have our shovels out, though (mine was out anyway, in case it actually does snow tomorrow), and my emergency virtual bag is packed and I'm ready to go.  Can you feel us there with you already, bringing you tasty things and cool (or warm -- your preference) beverages and plumping your pillows?

Hugs, hon.  Eat a fudge cookie or some ice cream with Kahlua on it, and get some sleep.  We'll talk to you again tomorrow.

otter 

Juli50

Hi all you wonderful May 08 ladies! I have been following you since your inception because I am a Sept 08 chemo gal. You are all so inspiring! A couple of the ladies from my Sept 08 Chemo Group are going on this cruise...   Amoena and Breast Cancer Wellness Magazine sponsor a 7 day, 6 night Breast Cancer Survivor Cruise.  This is their 4th year.  It is May 2-8, 2010 on Carnival Freedom.  It leaves from Fort Lauderdale, Fl and goes to Key West, Cayman Islands and Jamaica.  An interior room is $581 per person - that's less than $100 per day and includes everything.  In addition to the week's cruise, they give out goodie bags, have workshops and speakers - The keynote speaker is Suzie Humphreys, a breast cancer survivor.  Amoena is also sponsoring talks by Dr. Ken Miller of the Lance Armstrong Foundation Cancer Survivorship Clinic, Sherry Lebed-Davis, co-founder of Healthy Steps and Courtney Bugler, Atlanta Young Survival Coalition.  Get all the info from

http://www.breastcancerwellness.org/cruise.html   You can register there to win this cruise!

It's a great chance to meet each other in person and spend a whole week together! I am also looking for someone to share a room with (so this is why I'm posting here. lol), and promise I am a very nice person.

hugs, Juli

ewesterman

Jen

How you doing today? Saturday is A's bar mitzvah. We will send you a healing prayer (300 strong) and we will do the same for Robin as an offensive measure. Hang in there to you and good luck to Robin. 

Sable

Eddie! that would be wonderful my love. I'll take all the prayers you can handle to send.

Today I feel a tad better, if you don't count changing out my diapers every 2 hoursish. I know have 2 leaky spots. The new one is triple what the other one was. But on the plus side I think the first one might be slowing down. The sauve is working wonders so far. On the plus side I do have a real sports bra on now instead of the "paper thing" they give you at the hospital to wear. One wash and it started falling apart. At least this makes me feel a tad bit normal-er.

rock

Bon cruise, Juli!

Robin:  I had part of my toenail removed.  Did they give you "urea" solution to paint your remaining nail(s)?  I found it works really great, though I can only imagine what nosy parkers think when they rummage through my medicine chest.  Fingers crossed for you. My mamm came back fine. Waiting for results of MRI though am expecting they'll be fine too.

And jen, here's to feeling normal-er.  I am going to try to find you something that will lift your spirits, at least for a second.  How about... http://cakewrecks.blogspot.com/

familyroks

Jen - I like normal-er.  I like that alot.  I hope you get that real real soon.

You know...I got myself irritated by the whole FB thing after I read Noelle's post and all of the responses.  It had taken me all day to figure out what all the single color postings meant until one of my friends posted flesh colored.  I didn't get the what color bra alert deal-y-bob.  Once I figured it out, I didn't know what to say.  I have one, it isn't too happy about meeting its partner Amoena.  They don't play well in the sandbox.  Frankly, unless you go to Nordstroms, the colors aren't all that spectacular either.  Even if they were, I wouldn't be showing them off.

So here I am, planning a trip to Florida to see my parents for the first time in 3 years (before diagnosis). While others are proudly sharing their bra colors, in support of I DON'T KNOW WHAT, I'm praying that my next two (that is how many I have) Onc appointments before I leave for Florida, are clean.  Fretting over having to deal with this shit again before I get to see my parents and reassure them that I'm okay.

*sigh*  Self pity, eh?  This just irritated me.  Sorry.  And I've had such a good day getting my plane reservations.  Imagine what I'd be like if I didn't have a good day?  Scary thought.

kerry_lamb

Adrienne, and Jen and especially Robin and ESPECIALLY all of you...I'm sending lots of lamby-love. This shite never goes away..that's the most difficult thing for this here optimistic/shovel-toting/take-no-prisoners farmer's daughter to accept. ACCEPT. Fuck it..I will NOT accept it. I want y'all to be done with ALL of it. I've been working on our shed at the beach..lining out the centre-bottom (the 'canyon' ??) with really pretty plywood and SPEWING!! that cancer took all my savings and then some..that I had set aside for the shed. Also, I've been off the Femara for 4 weeks now and my hands and feet are WORSE (think coyote who gnaws his own leg off to get out of the trap. I have a whole new appreciation for THAT old tale.) I don't know what to do but I am at the stage where I can hardly walk after about 4pm. I'm talking 'hardly walk' May 08 style...not some sissy kind of 'hardly walk'. Ahh bugger it. OK, that's my hiss done. Jen, what you are contending with is massive...this is massive surgery. You have been through so much. I'm loving the suggestions for the....canyon-cleaners. Those baby wipes are definitely the go..Attach them to some.....item of a suitable shape (with braces bands). I remember them from when I was in ICU..I was way too proud to let the nurses do the wiping but I could not get to the loo. The baby wipes do a much better 'job'. Try to get the flushable ones..but don't stress. The planet can deal with a few non-flushables in this these extenuating circumstances. I'm loving the idea of the prayers at the bar mitzvah '300 strong'. I'm into this biz of summoning the power of the elders and all those who have gone before us. Jen, expect MAJOR progress after that grande occasionRobin..good luck. What a marathon you are in..and that is BEFORE the event! Karin, Karin, Karin. What's going on with Karin? I'm missing her. I hope she's ok. Love you all!! Sorry about the whinge xx

robink

Eddie - how's the BM preps going?

Rock - no urea yet, waiting until the podiatrist gets the culture back - although she seems certain it was a fungus. The funky nail has been with me for more than a year so waiting 2 more weeks won't matter. How long did it take for your nail to clear?

Kerry - Marathon of my making but it keeps me busy and not obsessing about next week. Forgot my passport had expired so this afternnon have to get a photo taken, go to the post office to turn in the application. Good thing I had my hair cut yesterday (any way - can't go into my body resculpting venture with crazy hair)

Adrienne - have I missed something? Why are you worried about your onco visits? Aren't these just routine, no new problems???Are you looking forward to the Florida trip? Hope it will provide pleasure and now just be an obligation.

Linda - the last 2 nights I've slept with a night splint on my right foot, took it off half way through due to irritation to the top of my foot. Have to say that even with interupted night therapy my foot didn't cripple me in the morning. yesterday I had a session of Extra Corporeal Shock Wave Theraphy to the right foot, it hurt during, only mildly achey today. 1-2 more sessions possible but that will have to wait until I can drive again.

Jen - no more new leaks I hope, and using fewer diapers. Hey - what about those blisters? What did your doc say was the cause of those? Seriously - ask him about would care centers if yo don't make progress soon. (When DH had 3 vessel bypass surgery 4 years ago, his leg incisons split open cuz the doc fluid overloaded him. The wounds wouldn't heal, DH asked for a referral to wound care, arrogant surgeon says "I'm the only second opinion you need", we left the office and walked down the hall to the wound care center. DH and asshole surgeon parted less than friends). Is you pain getting better?

Kristy - remind me why now you are in the clinical trial. Hope it didn't ravage you like Gemzar did to Dana.

Kerry - Karin posts on FB from what I see. Whn you find the answer to the waitline growth question, pass it on. Since my diagnosis 2 years ago, going off HRT, surgeries, 6 months of Femara, and taking a more sedentary job cause I couldn't deal with the pace at the other one my weight and waistline have suffered. Going to take before and after photos and measurements.

Better get on with my day!  Love to all.