Starting Chemo April 2009

Today's update re Betsy. Damn I wish she was recovering faster!!!



Here's a Wednesday Betsy Update from Betsy's sister Barb sent to family and friends. 

Rich



Hi All,

I arrived yesterday (Tuesday) to find Sister Betsy, sitting up in a chair, and doing semi-okay.  She was actually feeling a bit better from the previous day & night. She had eaten some food throughout the day & taken a short walk with Rich.  BUT it seems like nausea & vomiting have followed her throughout her recovery process on Saturday, Sunday & Monday.  This morning (Wednesday), she felt terrible again and had a significant headache, more nausea & vomiting.....so we headed to the ER. ( I was positive she was dehydrated by now and needed IV fluids--sweet Rich agreed)  



Good news to report, abdominal xrays showed no bowel obstruction which was everyones greatest fear.  She did receive IV fluids, antinausea oral & IV meds, and a few more medications to get her over the hump.  The gastrointestinal issues have been her biggest problem since surgery and extremely tough to overcome. 



 We are home now & she's resting again.  Gonna concentrate on increasing her fluid intake and slowing introducing more food as tolerated.  She's a trooper!  Her incisional pain has been improving....no pain pill today so far.  Looking forward to a much better day. She just needs a break that's all.  More later, Barb  

OMG first things first -- damn f***ing doctors -- if they can control nausea/vomiting from CHEMOTHERAPY, and all of us know firsthand that they can -- we all got and took our Zofran, Emend, Compazine or whatever cocktails didn't we -- so why in the hell couldn't they control Betsy's nausea?! I suppose since I'm back on chemo that's why they totally refreshed my supplies of Zofran and Compazine, but in addition to using them on past and present Chemo Days I've also successfully used it against nausea from my pain medicines too since they sometimes make me a little queasy -- Compazine is actually enough for this so I reserve the Zofran for Chemo Days now. I have f***ing chemo brain AND am now blowing out even more brain cells on a daily basis from being on pain meds (yes, the Oxy nukes daily and weekly morphine mega-nukes for my bag changing day -- and *I* am able to be frickin genius enough to figure out under THOSE circumstances what I should be taking to control nausea and it WORKS -- don'tcha figure a goddamn doctor with an estimated IQ between 125-150 who is NOT all messed up from being on drugs could have kept Betsy from becoming nauseous in the first place? Like she doesn't have ENOUGH frickin recovering to do WITHOUT that?! EEEEEEEEEEEESH!

Uh-HUH. Right. 

Titan -- LOL maybe you WOULD be thinking a 10:30 AM drink was a pretty good idea if you were having surgery? My surgeons always beat me to that, though. Either they schedule me "too early"  or they put me on that "No eating or drinking after midnight" regimen which kind of saves me from myself? LOL

Amy -- I've read about women whose brains were fine while they were ON their chemo, but yeah, like you, a few years down the road, turned into functional retards (and this was the type I feared I'd end up with when I was about to decline treatment! WTF is this years AFTER shit?!). Unfortunately my own retardation commenced while I was on mine, and I don't think those lost marbles will ever be back. Your type of chemo brain is every bit as legit as anyone else's as far as I'm concerned. And thank you for all the Betsy updates. You'll have to keep her under surveillance for all of us until she can get back in here and speak for herself.

Helen -- life is what happens while you're not paying full attention. (Can I start over as 19 again too? I can't handle a whole half-century!) 

Geri -- :-O :::::faints:::::   ::picks herself up from off the floor:::::   you thought I was going to propose to my Pack Rat, who broke up with my predecessor as much for her claim to want to get married as her issues with fidelity (as in, fidelity was not one of her values -- so why would a woman who didn't believe in being faithful to her mate be pestering him to MARRY her?! Well he apparently really does NOT want to be married, for real, because I NEVER had a problem with being faithful, he knew that and still he never proposed to me (even when I was healthy and we could conceivably have had a future together). I have to also admit I was less than enthusiastic about the idea of marriage due to my divorce (3 years after the divorce was when I got fixed up with the Pack Rat). I loved my former husband when we were dating, living together, engaged, and married -- we split up because he had an affair (which, since I still felt in love with him, left me totally poleaxed). And I had NOT been young and/or impulsive when I chose my husband (who was a man my age) -- I was 31 when we met, 33 when we moved in together, engaged at 34 and 35 when we got married. Three years later he takes up with the little sister of the girl he dated when when he was 18 -- now that she was 24 instead of 4! So some kinds of decisions, no matter how careful I am, I just can't trust myself to be able to make, and marriage is one of them. So yeah, I'm going to propose to a man who doesn't even WANT to be married! -- NOT --  

It's nitey-nite time, so here's a well-wish for Betsy's healing and maybe tomorrow I'll tell you how I almost just died again (Friday late night through Monday night). 

Morning all. Good ratness why can't I just wake UP already?! I keep nodding in and out. Maybe I should just quit my bitchin' already? So where do we start. Yeah the nodding off, which is where it all started when I wanted to get us all into that chat room Friday afternoon hoping our virtual talking behind her back would make her feel supported while they cut her open and started stealing her body parts. Well it got worse, the nodding off, no doubt because in addition to the Oxycodone/APAP which just totally changed  from "Take 1-2 tablets every 4 hours as needed for pain," to full on Oxycodone "Take 1-2 tablets every 4 hours as needed for pain AND *OxyContin* "Take 1 tablet every 12 hours for pain." So that's a pretty serious change to two of my serious medications, and, it gets better...  --NOT!!-- See, Friday was also my ascites bag changing day. The changing of that dangitbag is so painful I involuntarily holler and scream even when pre-tanked on all my Oxys -- so the last two changes they told me to also tank up on morphine (i.e., take 0.25 mL liquid morphine by mouth in with the Oxys. Well whatever works huh? And this sure did; I only winced once throughout the whole procedure because something TICKLED! Yes I said tickled. I think it was when she (the nurse) was just cleaning/sanitizing the "bag area" in preparation to put on the clean new one. Of course and as usual, additional pain medicine helps the pain and destroys my brain. So there I am finally all re-bagged, clean and dry, feeling NO pain whatsoever and also entirely mentally dysfunctional (and that's how I show up to meet Geri and whoever else I hoped to catch in the chat room too, I should note).

Oh yeah so that's where I was at, in that chat room -- drugged out of my mind and physically exhausted from my Bag Changing. I couldn't figure out what Geri's technical problem with the chat room was (and my being on all those damn drugs didn't really expect to be able to LOL) but I also lacked the common sense to stop chatting AT her as compared to WITH her. :-( She came and went, technical difficulties coming and going. I ended up nodding in and and out, literally falling asleep, jerking awake, nodding out again for a couple hours until I just had to get the hell off the computer and just give up and hope somebody ELSE could be around to help Betsy since I sure as hell couldn't. I simply continued to deteriorate for the remainder of the evening and through the weekend -- because I got totally confused with my new Oxy configuration and ended up taking the wrong medicines at the wrong times for three days solid, after which time I simply stopped taking EVERYTHING, PERIOD (and I bet that's why I didn't end up dead too). The more memorable events (most of which I found out after the facts from my Pack Rat and Nurse Donna):

1. Sunday or Monday "night"  (i.e., about 3 AM) Donna was at my house shouting my name and banging on the door for an hour to no avail -- I was just plain old oblivious alternating between totally passed out unconscious, or being 'awake' just walking into walls and losing my balance, zero awareness of my surroundings whatever the hell they were.

2. OK, so I knew the receiver for my landline had been AWOL for the past 3-4 days (and it still is), but the cell phone disappeared too and my Internet had gone down. Anyhoo I guess if nobody can reach me I should probably expect that Nurse Donna, whose emails I always answer, is going to freak out and make a frantic call to the motel in CT where my Pack Rat is staying (this has been his office workweek) when she can't get me on the phone AND I "stop" answering her emails to boot. My Pack Rat gives her my cell phone number. Why didn't *I* ever give it to her?  Because (until now) I never gave it to anybody except my Pack Rat and Tas. AND WHY IS THAT? More to come. Do you gals want a long interesting story or a short boring one? LOL

3. I lucked out -- the cell phone turned out to be in the computer room. Unless I actually know where I left it, there is no way on earth that little f***er can possibly ring for long enough for me to be able to locate it by where the sound is coming from. When you remember that for 12-15 years I used to do all my own audio engineering, plus occasional mixing and soundhecking for fellow musicians, and now can't tell where my cell phone is "by ear" unless it constantly rings for several unbroken minutes -- unless I at least have a clue where I left it last, well THAT must begin to clue you the depth and scope of my chemo brain. So Tuesday morning I happened to be going into the computer room from the bedroom (they're immediately adjacent) when I heard the cell start ringing and there it was on my computer desk. It was my Pack Rat wanting to get "my side" of the story (he had already spoken with Nurse Donna), find out how I was feeling and even though he gave her my cell number, tell me still I should call Donna ASAP and schedule an immediate home care visit as quickly as I could get one (I did: she was here Tues afternoon and we straightened a LOT of things out).

4. Yup, I most certainly did get confused about the new med configuration and instructions for taking. I lined up all my meds on the coffee table for Donna, we found where I went wrong (yup, with the "new" shorter acting Oxy and reorganized, together, my "dispensary and storage system." So looks like I'm back on track now, taking the medicine I should take, when I'm supposed to be taking it, and climbing up and out of the train wreck. Oh, and also, about my chemo. Yes, Dr. C ultimately does want me on the 3-ring circus of 5-FU, M & C. The reason why she told me to stop taking the M & C after my 5-FU infusion was NOT financial even though this regimen given as palliative symptom treatment to a Stage IV patient with an expiration date IS every bit the financial/priority screwup I originally said it was -- it was because my labs drawn immediately prior to getting the 5-FU infusion were so bad that going back on the M & C would probably poison me! :-O Now that my Internet is up and running (enough anyway; it's still kinda on the wonky side) I'll have to head on down to my patient online test results section and find out what could be so bad they'd take me off chemo they really want me ON and which had been working.  Um....oh wait, no can't do that now can I? Mrs. Pack Rat sure as hell wouldn't, not for all the shinies a Pack Rat could possibly want. LOL

5. Last but Not Least: I Mostly Hate Cell Phones, But... Until August 2010 when my Pack Rat literally dragged me into Dollar General and held me by the arms facing the TracFone display until I chose one and purchased it (have I met my match in 'subtle' here? LOL), I didn't even own one of the damn things. While having had one for about two years now has (slightly) mellowed me -- I'm still not a huge fan. Yes they're good to take out with you in case you have to make an emergency call, and they're even convenient to have around when you're out grocery shopping and you see something funny (like that shelf full of bags of carbon free sugar) and just GOTTA tell your Pack Rat about it "right now" -- the good still "counterbalances out" with frequent poor audio quality (dropouts primarily), being very hard on older eyes and stroke addled fingers, having too many unnecessary "features" which are hard to learn if you have old eyes and stroke addled fingers and so on. So I'll call cell phones "necessary evils" (like how else could I have told my Pack Rat this past summer that I was about to be ambulanced to Dartmouth for kidney failure "off-hours" while he was working in CT? But y'know, my landline has actually been the worse inconvenience -- it's got superior audio quality....except I keep misplacing the receiver. When I bought it I was still living in the old apartment which had no stairs so I only needed a model with one receiver. In THIS place I need two due to the townhouse style layout. Cheapskate that I am, instead of buying a 2-receiver model, I keep filching the single one I have with the base, and as such, frequently misplace it. Not all that long ago my Pack Rat starts talking about how he's going to replace his landline with either his cell or Skype. His neighbor lives totally on cell, no landline at all. IMO the sound quality of Skype makes the cell phone dropping-outs sound great, would you believe that. A combination of my Pack Rat's switchover to Skype, all the related conversation and the astronomical amount on the check I wrote last night to pay my communications bill (a "double hitter" package which includes both the landline (unlimited voice comm and DSL high speed Internet) is beginning to waft through my system because I'm so tight on money and communications is the only place I really even have room to make cuts. I mean, not buying food or heating oil is NOT an option, and even though I never want to drive ever again, unfortunately I do have to buy another car (which means insurance as well as gasoline, maintenance and repairs over time-- but maybe if I get rid of the landline and only use the cell and DSL I could save a few bucks without TOO much pain...ya think? Any of you do this ever? Any of your family members or friends?  Did you like it? Did they? Was giving up the landline enough of a savings to make it seem worth it?

Thanks and sorry for being such a pest. ;-)

(BETSY:  Feel BETTER ASAP!). 

Betsy, hope you are feeling a little better. Lena, thinking of you.

Hope you all have a good weekend. Hugs to you all,

Hi all,

I'm feeling alive again. Ya know I've always been full of shit...well now it's official. If could just keep food moving in my system, I'd be a very bruised happy camper. I am so bruised and swollen it's ridiculous. My pelvic area is black and blue and if you didn't know better you'd think I was the one in the roll over accident. I actually called the nurse today and said...how much swelling and bruising is normal..its crazy. They gave me anti coagulant drugs before, during and after surgery so I'm about four sizes larger than normal.

My wonderful sister and dh are helping in the count down for the first BM. It's a pretty sick discussion. My sister said it's been in you so long that when if finally comes we should name it! LOL until my stomach hurt (which doesn't take much).

I'm also dealing with fluid in my lungs. This has not been a smooth recovery. I have so much senna and miralax on board it's going to be scary when things start moving in me. I vomited for 4 days before the gave me prescription anti nausa meds. -totally crazy. I even spoke to the doctor in advance of my surgery about my slow bowels...I had no idea they would just stop.

Thank you guys for the support. I felt you in the operating room with me. You were a calming influence.

I can't sit at the computer any longer. Oh..one last note. No cancer in the cervix, nodes or ovaries and tubs. TG - Wed. I have my post op to hear more of the details and staging.

signing off...

Betsy

Let us know what you name "it"..ok Betsy?   Great to hear from you...glad to hear the good news!.. Glad they finally gave you anti nausea meds..it's about time... I agree with Lena...what the heck.

Wonderful to hear from you Betsy, and as everyone has said, we all wish your recovery had gone smoother, but hopefully you have turned the corner and your reports come back good.

Lena - how are you feeling?  After your post the other day, I hope they finally have you on a good schedule of pain meds.

Hope everyone has a good rest of the weekend!

Geri

OMG Betsy...are you serious... I want to do something..who can I call..I hate this..

Betsy, it's very upsetting that you would be treated (mistreated) like this. Sounds like the staff really let you down. I agree that it is not unusual for bowels etc. to stop working following surgery and they should have taken care of you and not sent you home in that condition. At least you are starting to feel better. 

Feeling better today, the swelling is beginning to ease a bit. I'm sore but it's not bad.

Dear all, I just wanted to come by and wish you all a Happy and Meaningful Thanksgiving. I am certainly missing the Holiday this year, I really enjoyed it during our time in the US.

I hope you all have a great Holiday weekend.

Hugs to one and all, Judy x

Happy Thanksgiving to all of my friends and sisters here.

Betsy, so glad you are beginning to feel better.

Judy and Helen - you are invited to my boyfriend's house for dinner tomorrow night since you don't have an "official" Thanksgiving holiday.  I would invite you to my house, but if you knew my cooking skills, you would be sooo happy that I said my boyfriends!

Lena, please stop in to tell us how you are - it has been 6 days since you posted, and I know you were having a hard time then with pain and regulating your pain meds.  I am worried about you.

Geri 

Happy Thanksgiving everyone!  And Thanks to you Judy for keeping our thread together...

No fruit at my house Helen..we are having pumpkin pie w/whipped cream..apple pie w/whipped cream and pumpkin roll..with whipped cream...YUM!   

The diet be damned..I'm going to eat.

Betsy..hopefully you can eat too....and Lena...and Geri..(since you aren't cooking).

Geri, thanks for the invitation, I will definitely be there in spirit with you all, and Titan! Your menu sounds fabulous!!!

Betsy, I was so happy to read your post, sorry you are having digestive issues again, but I am really so pleased that there will be no further treatment. That is really something to be thankful for!

Lena, I hope you are doing ok, please come by and let us know.

Helen, Amy and everyone, have a great day!

Sending hugs to you all, Judy x

Lena..good your PR is there...nesting with you...

Judy..we had plenty..wish you could have been here...we mixed the families this year..what a concept...and we all did well...

I have a little 4 yr old niece and we played Guess Who...and Twister...I hope I can move tomorrow..