Starting Chemo in JAN 2007

Skye, roaring over you wearing teal blue nails! Funnnny!

I canNOT believe the Herceptin screw up. My God! There is a reason they administer the big dose in 90 minutes and not 30. Holy crap! No wonder you guys have nausea. I do Herceptin again next week and am going to ask the nurses about it. Jeez, we're lucky to live through BC...let alone these mess ups!

Hi,
Pat,
I have # 10 on Friday. Melia, you and me will finish the same week. Hurray!!! I have swelling and I am also getting more tired. I am going to ask for lasix on Friday.
Lynn,
Congrats on your halfway mark!
I hope your infection is starting to clear up.
Skye,
3 week dosage in half an hour?? Did you get a headache? No wonder you were nauseous. Geez. That’s awfully fast! What were they thinking?? I had a mess up also two weeks ago. I had a new nurse and she brought me 3 Zofran pills twice in 15 minutes. Luckily I was aware enough to catch her mistake. She also administered my herceptin in one hour instead of half an hour- opposite your situation. I thought she gave me a 3 week dose instead of a one week dose. I called the next day to ask if I was given the correct dose, and the head nurse got huffy with me. Instead of telling me she would check, she told me that two nurses always check it first and it was the correct dose- without even checking. The new nurse also starting giving me my taxol pre-meds before my herceptin and before checking my blood to see if I even would be getting the taxol. I would have been a zombie all day for nothing if my counts were too low for the taxol. I caught that also, but really!!!!
Cindy,
That’s great! Only one more week. You will have to celebrate big time.
Nancy,
Sorry about your leg pain. Could it be effects of the taxol still in your system? Hopefully it will go away before your appointment. This whole thing does stink, but please hang in there- it WILL get better. It has to. There is an end-you will be done this fall.
Caya,
Let us know how the oncologist appointment goes tomorrow. Good luck. I am glad your dh's brain MRI came out fine. You are right- this whole thing is like one big roller coaster. Enough already- time to get off!!
Mel,
It must be so frustrating for you to delay your diep again. Maybe you can see him again and ask him to re-evaluate in person. Maybe you can meet somewhere in the middle, if he feels you will be ready. He seems conservative, but that may be a good thing. He does seem to be very caring, and not just concerned about just doing another diep. My PS is not even planning to see me between now and then, which could be a little scary, especially if I am not ready. I think the pre- operative appointment blood tests will also help determine our readiness.

Jan,
Did you meet Dr. Allen today? How did it go? Have you found out about your insurance yet. Hopefully, you will have the most famous and best diep surgeon in the country- the Pioneer of Diep.

Tina & Nancy,
We all missed you last night.
Viddie

Good Morning all,
Skye, glad your interview went well. Love the idea of teal blue nails. Have they recovered from the chemo?

Pat, I just had taxol 10 yesterday, and yes, I feel like making it from the kitchen to the bedroom is a major feat. I have never felt this type of fatigue. I am hoping that within a couple of weeks of finishing (two weeks from today, yeah!) I will start to feel more like myself. I miss the gym, but all I can do now is drag myself to work and back to the couch. I agree with Mel that working is impossible if you have an active job. Mine is a desk job and I have done ok .... but am having someone else do a quick business trip for me next week, b/c I won't cancel chemo and I think it would wipe me out. Up and back to Northern Cal for a short meeting, one day, four or so hours travel, nope. Fortunately I work for the best people on the planet, who are just glad I am there, and don't ask me to do anything extra right now.

Lynn, I am worried about the stress on your body of that ongoing infection.

Nancy, I have wondered about you and was going to ask this morning if anyone had heard from you. I can't believe how long it takes to get relief from these doctors. Do call again.

My thoughts are with all of you, and everyone who hasn't checked in yet or who I have forgotten. My brain is soooo foggy. I have sticky notes and reminders all over work!

Melia

Caya, happy to hear the DH made out OK.

Rebecca, my lashes/brows didn't really seem to go until the end too. I thought I'd got through it unscathed. Viddie and Melia, beware of that: only until I was done w/Taxol a week, did I really notice a huge loss of brows, lashes.

Melia, #10...I feel your pain. I was pretty beat by then... it'll take a few weeks after #12 to begin feeling normal again...but you will.

Lynn – Congrats on the half-way point. It’s all downhill from here I hope. How’s the infection today? I hope it’s getting better (or gone).

Mel – your drains are coming out today – yeah! I hope you enjoy a nice shower afterwards!

Nancyab – please PM me your email address again and I’ll send you the chat room link. Sorry it didn’t work the first time. Sorry you are feeling so crappy. That’s crazy that you can see the neurologist until August!

Caya – sounds like a good plan to try to get in to see another onc. Good luck. I am glad to hear your husbands good news.

Nancy – I am so glad you could help the woman that you met at rads. I met someone recently who’s husband had rads for brain tumors – they told him his hair will NOT grow back in the rads area – how bad would that stink!?! Well, she said she thinks he looks good bald – good thing.

Sounds like everyone is really worn out and worn down right now. It’s temporary, it’s temporary, it’s temporary….. it will get better!!!!!!

My eyebrows seem to have had a little overnight growth spurt. They look like they are about half-way back to normal – but they look way better than they did yesterday.

DH and I drove down to Charleston and back yesterday to meet with Dr. Allen re: DIEP. Good news – he was completely confident that I have enough tummy (now I can stop eating donuts). I really like him and everyone in his office. He spent almost 2 hours with us and was fabulous at explaining everything. For the first time my DH now completely gets why I don’t want implants thanks to Dr. Allen. We also spent time with his nurse getting some information to use for the insurance appeal. She was very helpful. (Plus I have goldnmom here who’s already been through this same thing). I think I have a long fight ahead of me there. In the meantime they are suggesting I meet with the one doc in NC that is in network for my insurance. Guess what? We found out yesterday that the guy that my insurance co wants me to use is not board certified yet!!!!! (He’s working on it now) Ugh!!! I’m sure he’s great – but I just don’t want him to practice on me Dr. Allen says he thinks the learning curve is 50 or more of these surgeries. The NC doc has done very few. Anyway – the consult with Dr. Allen was great and I want to get my recon with him more than ever now. So keep your fingers crossed for me that I can get what I want! (Because if I don’t boy are you all ever going to hear my whine).

On top of the great meeting Dr. Allen gave us the name of what turned out to be the perfect dinner spot. We asked for casual and great seafood. He sent us to a restaurant in an old Navy building right on the water. The meal was excellent, the chocolate dessert was fabulous and on top of that we sat outside overlooking the water. We watched dolphins playing and pelican’s diving for fish. It was so relaxing and fun. We didn’t get back until 11 last night, but the girls survived with my brother – he picked them up from summer camp, cooked dinner, gave them baths and got them to bed on time (he even fed the dogs). This is quite an accomplishment for my 32 year old bachelor brother! The girls had a great time with him.

Sorry for the long rambling post –but I’m just so excited about the whole Dr. Allen thing.

OK – back to work. Are we chatting tonight? What time? PM me if anyone needs the link to our super-secret private chat room (Nancyab and tina (?) can’t tell you how rotten I feel that we didn’t get the info to you. I blame chemo brain).

Part 2

Nancy, I had the same feeling the first week of rads. I was so weepy, cried at everything. I couldn’t believe I was doing more cancer treatment that is harmful to my body. I somehow got over it and am fine everyday when I go. Hopefully you will feel better too!

Award winning reporter Skye? We have our very own celebrity!

Caya, call the on call onc and say you need the diuretics and can he call it in. I didn’t have to see my onc to get the script, just told him I gained 8 pounds and couldn’t get shoes on. Good luck Caya, I know how uncomfortable it is.

Viddie, Dr. Lee won’t see you again before your DIEP? Really? I suppose if he’s already examined you and has his plan. I’m supposed to call in August to get an appt. in Oct after I see the breast surgeon in September. You might want to call and check to see if Dr. Lee wants to see you now that you have seen the breast surgeon.

Rebecca, I use aquaphor as well. I wish is was more a lotion and absorbed by my skin better, but it does seem to be working well. I too feel less chemo brain as I’m further away from chemo, although I do still forget a lot of words, I think that’s more of being mid 40’s and not chemo…but now I have an excuse!

Melia, I have a desk job too and have been working 95% from home and part time since December. Sometimes I wish I wasn’t working and could just sleep all day, but other times I’m glad I had the distraction.

Jan, how far are you from Charleston? The parent company that I work for is in Charleston and I will be traveling there periodically. What was the name of the restaurant? I’m so happy your appt. with Dr. Allen went well. It is so important to have confidence in our Drs. Sounds like there is no comparison in PS surgeons…keep fighting the insurance. I hear that many times they eventually give in and pay for out of network.

I can’t tell how thrilled I am that we are all so close. It means so much! There’s always a cheerleader amongst us to help others who are worn down. You are all so very special!

I think we said we'd do chat at 7:30ET tonight, is that right?

Love and hugs,
Lynn

Lynn - I am 3.5 hours from Charleston. The restaurant is "Fleet Restaurant" it's worth trying out if you are there.

That sounds perfect Lynn - I am just a short drive from the airport.

Hello all:

Well I finished Zap #18 today, only TWO to go!!

Yesterday, we (my girlfriend Anita & I) changed out plans, and went to Lake Louise, rather than Head Smashed-In Buffalo Jump. We did a hike around the lake,and also did a tour of Chateau Lake Louise. They had a girl playing a harp, and she was just fantastic.

After our morning hike, we went back to Banff for lunch at Wild Bills. It was a beautiful day in the mountains with a temperature of about 24 C. (about 75 F).

Lynn, I sure hope you get that infection cleared up. Jan sounds like you know what you want with respect to reconstruction.

Hope all are well.

Hugs…Joni

I know it is scary having that machine buzzing at you. I try to pray or think good healing thoughts and then my anxiety or panic attack can't creep in. I did feel warm at first but now I feel nothing. 8 down 25 to go. I'm feeling a little tired from my workout/rad/work/home schedule but that's about it.

Oh, boy, Jan, reading your report on your DIEP plans makes me realize that I went into TRAM flap very blindly. I had the most sought after surgeon in this area for the mastectomy but the PS he usually worked with had recently left. They hooked me up w/a woman surgeon younger than me...my breast surgeon had never worked w/her before. She's very "cosmetic" oriented. After my TRAM, my BS's nurse practictioner was questioning me: "did I feel like she talked me into a TRAM flap", etc. I said no, but I did worry about how many she had done before me and was I "Practice Patient". I was so dazed back then, I never inquired as to how many, IF ANY, she had done. Boy oh boy... I am seeing her again in Sept. regarding symmetry surgery, etc.

Well, had a FIRST today. I made a rather large deposit at the bank for my husband...all cash..he had sold part of a collection he had. I'm in the drive thru w/the kids on teh way to our dental appts. "Ms. Jones, would you please come into the bank?" Apparently one of the $100 bills was couterfeit. I about shit. (Sorry, no other word for it.) I told them I couldn't....had to go get my teeth cleaned. : ) So now I have to go "turn myself in" in the am. I guess I have to fill out paperwork for the Secret Service. Does the fun ever end?

Hi Ladies, forgot about the chat, doh! Next time I'll be there I promise.
Jan, if you need more "tummy" for your reconstruction, I have plenty to share. I can ship it fresh from Wisconsin.
Viddie it's maddening when doctors do things like take vacations but you played it very well. He might have been too burned out to do his best on you.
Tina, the horror! How awful that someone slipped you a counterfeit and now you have to deal with it. Hope that goes well for you in the morning.

I had a call today from my onc's nurse. It seems that the question of me, dentist and antibiotics went on and on with discussions between them and the dentist. They finally decided that because my white cell counts are low and going lower as rads progress, they don't want me getting any dental work done at all until after rads...4 weeks after rads! And then I will still need the amoxycillin due to the port. They said rads can be as hard on white cell count as chemo, and sometimes the count doesn't come back as quickly as it does on chemo, and mine is not good. Which explains why I already feel so wiped out. So I will just have to do extra flossing for a couple of months. I guess I should also still be avoiding crowds.

Cindy all this makes me extra happy for you and everyone else finishing rads.

So what transpired on the chat? - Skye

Finally read the posts-
Viddie -too bad that your surgery was postponed, but at least it's only a week ...
Melia - sorry you are so tired, but glad you are almost finished the TAXOl
Jan - sure hope you can get your DIEP done with Dr. Allen -I can't believe your insurance would insist on you getting your PS done with a surgeon who is not board certified - that may be your ace in the whole - you shouldn't have to be the guinea pig.
Amera - I hear you on the short hair vs. scarves - I don't have enough hair yet to go "topless", and I think I am becoming immune to the turtlefaces when I where a scarf or baseball cap.
Lynn - great story about your little alopecia neighbour -
Joni - sounds like you had a great day with your friend Anita.
Skye, hope your white counts go up - we missed you at the chat
Rebecca - congrats on being halfway through your rads
and finally TINA - okay, so now I know why I saw your picture plastered all over the post office today as one of the "10 Most Wanted Housewives in North America" - lol - the fun never does end.
Have a great day everyone
Caya

tlc - love the story about how you are "lucky" to go home early. It reminds me vividly of my brother who was in the National Guard. When he took 2 weeks off every year for training his boss would refer to it as his "vacation" and everyone at work would act the same way. Now how 2 weeks in a tank in desert temperatures eating MREs can be considered a vacation is well beyond me. Sometimes people are just stupid. I wonder how "lucky" they would feel if they got to leave work early everyday for rads. Ugh!

Tina - have you been arrested yet for the fake bill? Seriously, I hope everything went well. It really stinks that you are out that money, I hope that you don't have too much additional stress over it.

TLC- people are so dumb sometimes. My father's wife once tried to tell me how lucky I was to be getting a boob job, and went on and on about how great I will look. All I could do was glare at her and mutter "Nothing is worth the price I paid".

I would give ANYTHING to have my old saggy boobs back.