Starting Chemo April 2009

First things first -- Betsy -- You don't have a laptop and can't post from bed?! (Either in the hospital after you wake up or at home while you're recovering?) I know, I didn't post every day either from the hospital or while convalescing at home, but I was still able to get on here to check in every few days! Well, I'll be thinking of you tomorrow too like everyone else around here, and I'm glad the Lidocaine is both helpful and on your chart. Dunno if it was me and all my loud Lab Rat squeeking but seems Lidocaine is now SOP for setting up IVs in my med center; I don't have to ask them to do that anymore. I do still need to put my EMLA on for regular blood draws though. Well whatever doesn't hurt is fine with me. :-)

Amy -- I was also terrified about chemo brain before I started my chemo in 2009. It was my #1 fear (in order my top feared SEs were: chemo brain, then nausea/vomiting tied with hair loss; the others kind of paled after those, i.e., fatigue, weird or no appetite, premature but permanent menopause, etc.). Those were the reasons why I originally wanted to decline treatment. They did do a good job controlling the nausea/vomiting but I never got all my marbles back and it has taken two and a half years for SOME of my hair to get to top of shoulder length. My brain was my reason for living, it defined who I was, and the best parts are gone. I just don't wanna know about if I'd have ANY brains left if I did any of those harsh chemos now. My onc really wanted to put me on Abraxane for this peritoneal mets business but I wouldn't do it, so that's how I got the gentle stuff this time -- I specifically said to her "NO MORE BRAIN DEATH!"). Oh, and Amy, ALL chemo brain is real -- why would you doubt yours but not the rest of us?! Hope you enjoy the visit with your parents. BE CAREFUL DRIVING! If I could wreck in rural NH who knows what could happen to YOU.

Judy -- yes, you (and everyone who said stuff like that) does make me feel better. It's why I didn't totally leave the board last week (I was disgusted with a lot stuff in the Stage IV area and was thinking I needed another long vacation from BCO)...but didn't because I didn't want to miss YOU all HERE or disappear on Betsy either. Oh, and so your kids finish your sentences, huh? At least someone does. My Pack Rat constantly accuses me of not finishing sentences. He's right, I don't, only it drives him buggy. :-(

Titan -- I refuse to believe you were "meant to" survive your youthful car wrecks and get breast cancer for the purpose of getting to annoy me or anyone else. LOL Funny thing, while my Pack Rat isn't religious either, he's agnostic, not atheist. The difference between us is that for me, if there is no directly or indirectly MEASURABLE PROOF that something DOES exist, I don't believe it exists. He believes that the lack of direct or indirect measurable proof means that MAYBE it exists, so shouldn't necessarily be discounted because it hasn't been proven either way that it exists or not. Doesn't matter what time it'll be when I drink for Betsy, since I'm planning on a protein drink anyway (I'm still too skinny and don't want to overdo booze while taking pain pills). Or maybe it'll be morning coffee, if I sleep late enough. Normally I get up between 7:30-9:30 but 10:30 isn't unheard of (yeah, I'm in EST so 1:30 PM for Betsy will be 10:30 in the morning for me).

Geri -- I haven't been there in decades, but I've been to Bear Mountain once (it's gorgeous) and I used to continue to think of it as I drove past it going up north to see my Pack Rat while I was still living in NJ. LOL Okay, maybe I'll figure out what you mean when you say I have a whole "new perspective" on QOL -- but hmmm, is it this: My perspective is new because you never met anyone else who shared it? 

Nitey-nite all. 

Lena - I messed up on the original time for Betsy's surgery - not 10:30 AM - her surgery is 4:30 PM for us East Coasters - sorry for the confusion!

Hmmmm, OK. The quickie downside is, I don't know how and can't seem to be able to re-teach myself how to make a private chatroom. The quickie upside is that if any of you are interested in going to the existing chatrooms, we can and I'll post up later on how to do it if you're interested.

And now for a partial morphine ramble (it's bag changing day, so I'm premedicating as per nurse's orders; she'll be here in a little while).......

......had my 5-FU infusion on Wednesday, and yes, it throws off both the who-pays paperwork and also up-ends the what chemo I take and when, for the same reason (who-pays), because palliative and hospice can't get their collective litigious anencephalic heads about definitions about "what is palliative care?" and "what is hospice care?" and what is "increase QOL care?"out of their shit clogged asses. So I had the 5-FU and it went well enough, but was told to stop taking the methotrexate and cyclophosphamide for the rest of the week. I forgot if I'm supposed to pick those back up next week or not. So far as this regime (5-FU, methotrexate and cyclophosphamide) is concerned, my onc wants me on all 3 of these, so theoretically I should have stayed on M & C but couldn't. I can't do the 5-FU next week because I have no ride (Pack Rat is back working out of state, in the office), and in light of all that I don't know if I should take the M & C anyway; those are pills I have in the house and don't need to go anywhere to take them). Donna my nurse, sweetie that she is, is having to repeatedly switch me back and forth from hospice department (which will pay for M & C but not 5-FU) and regular visiting nurse patient department (which will pay for 5-FU and not M & C). Every other time she's here i have to sign this stupid paperwork I'm ready to just start lighting f***ing matches already.

And so none of these stupid ass organizations wants me to give me anything but a hassle over a chemo regime my oncologist wants me to take and now the hospital decides I what I really gotta do after my 5-FU infusion on Wednesday is go to the ER and get X-rays and maybe a CT scan of my chest because my oxygen is in the low 80s instead of between 95-100 like it usually is/should be -- when I have NOT just taken a necessary prescribed dose of a pain pill which is KNOWN to do that? Now they're all over me about pleural effusions and lung clots like I'm gonna drop dead in an instant when there's been minor indications of verfy small amounts of pleural effusion all along and nobody said the f*** anything -- it has to be them trying to keep me there after a long day (prior to the labs and 5-FU infusion, we'd gone to clean out my wrecked car and clear things up with the PD in the town I wrecked in).  HUH???? WTF is this CRAP? I accepted the X-ray but then insisted on leaving. Oh and I was now not able to have my ureter stent surgery either because labs said my platelets were too low. So no I don't know a goddamn thing anymore and don't even care. I'm done and going straight into Mrs. Pack Rat Mode. My Pack Rat's mother is a sweet and good hearted lady but she is also a very ignorant lady where doctors and medical issues are concerned, in spite of her own (thankfully non-cancerous) ills and those of her 80-year-old Senior Pack Rat. She never questions the doctors or discusses treatment alternatives, she just takes her medicine with a "Yes, Doctor" reply. Well that's where I'm going because I can't handle this other nonsense anymore. If they wanna kill me fine. If not, maybe they'll do something right that MATTERS. I have HAD it already.  When THEY officially call me and tell me to go back on my M & C I'll do it. When THEY want to schedule procedures and surgeries for me in a civilized, coordinated manner, I'll have them. Otherwise I'm just gonna sit here, take my pain meds as needed and let the nurse in to change my ascites bag.

Catch you later with more chat room info if you want it. 

Thank you Lena for doing all that checking on the Chat Room - I will be going there right after I finish this.  Your "treatment" plan sounds like a nightmare, and certainly something that you DO NOT need to deal with - you're right WTF - just follow your doctors orders, since in theory (not always in practice), he/she is in charge, next to you.  You need to handle this mess in whatever way you feel will lower the stress on you - either scream at anyone in proximity, or become Mrs. Pack Rat and acquiesce (when I first read "Mrs. Pack Rat", I thought you were proposing , and I was about to congratulate you on such a wonderful but totally unlikely step - then I finished reading the sentence

OK - off to the Chat Room to be with Betsy!

Finally figured out how to do the chat, and met up with Lena - we've got your arms Betsy - no LE issues for you!  Will check in in a little while

Betsy - your surgery should be over now (I believe you said about 3 hours), so I hope our virtual support in the OR helped you - Lena, nice chatting with you too (once I figured it out

Hope you get some rest now

I was driving back down from NYC from a nice visit with my parents as Betsy was in surgery. I sent my love and all good energy to her. It felt very connected.

I am waiting for an email from Mr. Buzz and will post it here as soon as I get it. 

Had my lunch with my oldest friend- we have been friends since we were 4. It was very nice to see her and spend a few hours catching up.

Will post as soon as the email comes in.

Amy

ps. Lena - my question about the chemo brain was - if I didn't have it at all DURING chemo, could it appear several years LATER? That is what is so perplexing to me.  

Hi all, sorry I didn't make it to the chat room, I just saw the postings about it. I was thinking about Betsy and all of you last night at 11.30pm. Thanks for letting us know any news when you get it Amy, and glad you had a good trip to NYC. I don't really remember if I had Chemo brain during treatment as I was so out of it then, but it is definitely very prevalent now. I think I realized it had really kicked in when I tried to get back into a normal routine and found that I couldn't function in the same way as I could before the BC.

Lena, thanks for your update, I am sorry that you are having a difficult time. (((HUGS)))!

Must go now and call my MIL. She had an appt with a new Oncologist for a second opinion and now we should have a better idea of her plans going forward.

Enjoy the rest of your weekend everyone and hope you are feeling ok Betsy .

Sending you all hugs as always, Judy x

Lena - how could you say you were stupid to come up with the chat room idea?  I thought it was so caring of you to go the extra mile and think of a "real" place we could all be together for Betsy - whether it worked well or not, I was very moved that you went to all that trouble to get us all together - thank you Lena, and I know that Betsy will thank you too once she is feeling better - which reminds me - FEEL BETTER BETSY! (FBB for short

I didn't see the post either!  Dang!  Oh well..I really was thinking of Betsy on Friday afternoon..and the rest of you too.....I just hope everything went well

Thanks for the post Amy - I have been thinking of Betsy, and glad to hear that surgery went well - hope the path report is good and that she gets to go home today

Amy, thanks so much for posting that. I am so pleased that Betsy is on the other side of the surgery now and hope that she recovers well and quickly.

Lena, I think that the chat room was a great idea and thank you for taking the time to try and make it work.

Hope everyone is having a good day, hugs to you all, Judy x

Here is another note from Rich, Betsy's husband. It includes a note from her sister as well.  Sounds like a slower recovery than she'd like, but sounds like things are going in the right direction. Here's the email:

She came home Sunday morning. Here's the email her sister sent out to family with more info. She's still feeling very tired, but improving all the time. She's had lots of nausea, but she's better now that we've switched from Oxycodone (bad nausea) to Hydrocodone (still bad) to Tramadol (much less nausea, but sleepy). Had several small meals today and took a shower(!). Good progress.

Rich

"Just got off the phone with Rich.....Betsy wasn't discharged until today at 11am. She had a spinal block prior to the operation and it really slowed her system down....she successfully passed all her discharge requirements today like walking, peeing, all the fun stuff that doctors & nurses demand you do before they let you go home.

She's home now and feeling pretty nauseated most of the time SO new pain meds were ordered today just in case the pain medication she has been taking was the culprit. She's taking fluids regularly, resting a lot and moving around also.

She's really doing okay Rich says, just thought she would be recovering more quickly. Surgery is still surgery and the body recovers at it's own rate. She is slowly improving and if the nausea disappears she'll feel even better! "

Thinking of you Betsy...!!  you've got to get better to watch your Ducks this weekend!....