The Chemosabe March Cruise

GAH!
They just called me to come in three and a half hours early due to the need to put the Taxotere in so slowly. This has totally screwed up my morning's plan of packing my bag, showering leisurely and having my daughter get here at 1pm, have my last little lunch of sushi and be ready for my 2:15pm appointment. Now I have to go get in the shower now and then drive myself and start this alone.

Big girl panties time.
Lisa

Taurie,

I had the same problem with my port installation - it felt like they had dislocated my shoulder. I took Tylenol regularly to relieve the shoulder pain as opposed to any pain from the port. In addition, I kept a heating pad on my shoulder at night to help relieve the pain and allow me to rest, and the pain finally subsided in about 3-4 days. Just hang in there!

For all of you concerned about pain from sticking the needle into the port - it just feels like a quick poke that is similar to when they stick a needle in your arm to draw blood. The port makes the process so much easier.

I'll check in with you all later!

Steph

haven't hurled since about 4 a.m., so that's a blessing. went in for a biopsy on the R breast this morning -- a teeny thing, just 4mm -- dr said it looked benign, and doing the biopsy probably took most of it out.
then talked to the surgeon (his ofc is next door to the biopsy place) as no one had told me: a) when i could shower b)when i could take the dressings and incomfortable bra-type thingy off, and c) when i would stop peeing blue.
dr. said the node looked ok at first glance, and he would call me next week with the results. he is going OOT for his MIL's funeral.
have an appt with onc Thursday, when i suppose we'll set the cruise date. i just want to get this show on the road. it's been a month since my diagnosis.

Just thought I better sign in again. Looking forward to my first chemo on 3/20. I get my port in on the Friday before. I have ran the gambit of emotion until today, my PET/CT scan came back neg!!! I have smoked for over 20 years and stopped cold turkey 2 weeks ago. Figured my lungs had to be bad and everything else but I was wrong. I'm ready for the fight now.

Taurie - I'm so sorry about your port. Are you a small woman by any chance? My port bothered me a lot for 2 1/2 weeks, now it just bothers me sometimes - feels like it did right after I got it - a deep, achy feeling in my shoulder and neck. I think it happens when I do something it doesn't like, such as putting my purse on that shoulder. My surgeon said that ports aren't made for thin people. No kidding lady, lol. I look like frankenstein. I hope your port settles down soon!!!

Linda - For your list, I'm doing ACx4 + Tx4 or however that regimen is written, lol.

I'm so glad that those of you who have started the cruise are doing ok. Thanks so much for the play by plays and updates. I worry about each and everyone of you. And, I really value your advice for those of us who haven't begun yet. There's nothing like the wisdom of experience.

I start my cruise on Monday. I had a tour of the chemo suite today and liked what I saw. Some of the cubbies even have their own tv. The people having chemo while I was there all seemed relaxed and taking it in stride - hard for me to imagine at this point.

Found out my CT scan was clear. The relief I feel is huge. My onc expects my bone scan to be clear, too (I have that on Friday). My MUGA is tomorrow, and the hospital support group meets on Thursday. This is a busy week for me, but I'm glad or I would be thinking about Monday too much. I got a wig from the ACS, the Biotene stuff, and I just need a few other things and I'll be ready to set sail with the rest of you.

Hugs and good luck to everyone starting tomorrow. We can do this!!!

Cynthia

Hey everyone! Just checking in again. Day 4 after first treatment on Friday. Things are getting better each day. Went to work today. I work Tues. and Thurs. as a secretary at an elementary school. I was very tired when I got home. Took a two hour nap. Also, took my first Neulasta shot today. So far no side effects from it. I'm starting to get my appetite back. Have been able to eat more today than the past few days. Trying to force myself to drink water too. Now I can't help but think about the next treatment on the 23rd. I don't want to get sick again and I will probably be starting to lose my hair. Not happy thoughts!!

Take care and big hugs to everyone!!

Hey, all. I worked yesterday and today and didn't do too badly. I kind of hit a wall after 6 hours yesterday, and today I left after 7 hours because I was time-change tired. I'm lucky to be able to do this, but there's lots to do, so I want to work full days when I can.

Hi, Melissa -- welcome aboard! It looks like we're spread out all over the month of March, so you'll have plenty of company when you actually start the cruising. And congratulations on holding at S3!

I started chemo last Thurs., but I'm just getting my CT scans this Saturday, so I'm still a little nervous about those results. My bone scan was clear.

Hello, Steph -- Thanks for leading the cruise! I'll be interested to hear how tx2 goes.

Welcome, 1stlite. Glad you to hear you have a good onc nurse.

Lisa -- I haven't had a chance to post in a couple of days, but I still am in awe of how you took on Kaiser and got the treatment plan you wanted. Thumbs up! Bravo! You go, girl!

Of course, they had to get you back by messing with the scheduling, but small price, heh?

Congrats to you, Nancy and Barb for getting #1 done.

Kirk -- Glad to hear it went so much better this time, and I hope Barb continues to feel well. Let us praise new drugs

Taurie -- Sorry you're having such a bad time with the port. I noticed too that bending over was the worst possible move. Mine didn't hurt as much as yours -- I'm not a small girl, by any means -- but I haven't been happy with how slowly the pain has been leaving over the last 6 days. I see the surgeon tomorrow for a follow-up, and I'll see what she says.

Angel -- Loved your "Before and after BC" pix! So good to keep your sense of humor. I got pretty depressed looking at the contents of my medicine cabinet today.

I hope the water retention doesn't hold up tx tomorrow.

PW -- Sorry to hear you had a bad reaction to the anesthesia. Hope everything has settled down by now. I know about being anxious to get the show on the road. I first discovered the lump on Dec. 14, and it just took forever to get things moving <<cough>>Kaisersurgeryschedulingstaff<<cough>> and so it was 3 months before I started chemo. I wonder how long it takes to go from one node positive to two nodes positive.

Holly -- Congrats on getting your PICC protector and putting your priest to work! LOL

rosebud -- Great news on the negative scans!

jill -- Good to hear you're back on your feet -- I'm thinking about hair loss, too. Ugh!! My once very thick hair has been thinning anyway (thanks to the maternal gene pool), so I'm pretty sure mine isn't going to look the same again afterwards. Oh, well -- guess we've gotta keep our eyes on the prize.

sheri -- I identify with everything you said. I need to research, too, but I also have reached overload at some points. Somebody stop me from Googling! And I "sound great!" -- because I' not whining to anyone in real life about my sore mouth, my sore port, my nerve irritation from the node dissection. Hmmm -- I remind myself of a child who needs a nap!

Lessons learned -- From Linda, take your anti-nausea meds as long as they tell you to. From me -- go back to regular food slowly. My mouth has been on fire since Sunday, and I think it's because I used too much of my beloved Heinz ketchup too soon. Too acidic. Even tomato soup is bothering me now, I'm on "Magic Mouthwash" which helps for a while and is supposed to prevent it from getting worse, but it's so frustrating to have my appetite back and not be able to eat anything but bland food without sharp edges. OK, end of thumb-sucking -- probably aggravates my mouth, anyway.

February cruisers -- Thanks so much for checking in on us and giving us tips -- a little experience really helps us newbies.

Good luck to everyone for tomorrow.

Max

Taurie,
I am so sorry that you are in such pain. I had my port put in on Friday, and I found it to be very painful, also. However, after the 3rd day, I noticed that it was definitely getting better. I am glad that you are seeing your doc tomorrow, because it doesn't sound like yours is healing the way it should. You're right, you don't need any other problems before starting your treatments. It's time for you to catch a break!
Here's hoping that you have a restful, pain-free night,

Marshabel

lisa,
glad yr treatment went well. what's gyoza?

Hi there, I start my first of four treatments on Tuesday the 20th so I guess that makes me part of this March sail. I am scared, can't lie about it. I am most scared about how my small kids will be taken care of. I have a huge support group, but really, at the end of the day, they really only want their mommy. My son cried the other day, he's almost 8 years old. I told him that my hair was going to fall out and I would be bald because of the medicine they are giving me. He was so upset saying that he was worried other people would make fun of me because I was bald. He is worried my feelings would be hurt. It made me cry--he's so sensitive and so concerned about me. My daughter, 5 years old, looked at him and said, "Geez Buddy, it's gonna grow back!" I thoughtI am so lucky---my kids will help me keep it real. I am certain that how I deal with this illness will affect their ability to face challenges head-on. It is such a responsibility and I just hope I don't mess it up.

Thanks for listening.
Paula

IDC, 1.8, ER/PR+, HR-, no nodes

Dawn: I've been thinking of you all day. I hope you found someone to pay attention to your port problems and take care of you. My surgeon was kind of surprised that I was still having the difficulties I did, but I haven't had nearly as much pain as you. She said part of it is bruising farther under the skin that you can't see. During the procedure she "washed" the port and line with the blood thinner Heparin to decrease the risk of blood clots, so that's why there's bruising.

Mine feels a little better today and so does my mouth. We had a lunch meeting at work, and they served pizza, and I didn't dare eat that, but afterwards I bought a beautiful roast beef sandwich.

playwright: My mother the retired nurse told me to treat each one of these procedures like I was having a baby. It's a shock to the system, so we need to rest, even if we're feeling better. I had one overactive day following the lumpectomy and couldn't move from the couch the next day.

Welcome, Paula, -- sorry you're being forced on this cruise. Aw, your son is so adorable, and so is your wise daughter! I feel so bad for those of you with young children -- our first instinct is to protect them from anything that hurts them, and here we are. Even my 20-something sons wanted to know that I'd still be "me."

Hello, Maliha! It must be so hard to be away from your mother at a time like this, but it's great that you and your siblings are going to be able to spend time with her. I look forward to hearing from the both of you!

Holly, I agree with you about keeping all the names straight! I am unable to remember my own some days! I got good news yesterday. My CT scan and my bone scan were both negative. Unfortunately, my start date for chemo was put back until 3/22. I still have a drainage tube (4 1/2 weeks later!) and they won't start until it is out. The plastic surgeon promised that it would come out on Friday no matter what the output is. I think I can handle a seroma better than I can another day of this tube!!!!!!!!!
I will have TAC every three weeks times 6 treatments. The oncologist also told me that I will definitely need radiation when I am done with that. I have to have my expanders completely filled before that happens so it will be chemo one week, fill the expanders one week, take a week off. I am not sure I am going to be able to go ack to work or not. I am so afraid to make a committment that I can't keep. I also have a lot of negativity from my boss and she owns the company. She says she will do what she can but she isn't showing it. Anyone get a new job during chemo treatment? Off to the Bahamas!

Glad the day went pretty well, Angelflight! Good for you sticking to your guns re having the onc visits the same day as chemo. my onc's ofc wanted to schedule me at the ofc 40 min away -- no, i said, i want the one on 290, it's 5 minutes away from my house. oh, said she, i'll have to see if we can do that.
anyone hear from refugee since her tx on 3/5?
marshabel and pmarsh , we're thinking of you.
JannM -- when does yr tx start?
Taurie -- how is yr port? any cruise date yet?

i'm just a little sad. having a cruise date makes it real now.

Marshabel - been thinking of you all day. Let us know how your first treatment went!
Angel - what a GREAT report! I am so glad you had an easy time of it. Attitude helps a lot - and of course the cheezits and beef jerky didn't hurt any! It's interesting to me that eveyone is getting ONE big tube of red Adriamycin. I had THREE and it took about 15 min/tube. Guess I look like I need a bit of an extra boost.

My Day 2 has been pretty uneventful - I awoke sick at 4am, but later took more meds and managed to get back to sleep until almost 9am! My daughter stayed to play nursemenaid to me (and to watch my Fawlty Towers DVDs) until about 2pm when she had to get back up to her place. I promptly took a nap - and I don't nap! - until 6pm. Wow! But I do feel better . I had some saltines and some water with fresh lemon. Going to try a little real dinner in a few minutes.

Sheri - I like your idea of resting out on the back porch after your next treatment - sounds ideal. I spent an hour today out in the sunshine in my teak deckchair just reveling in the warm Springtime - oh, and going through my mail from yesterday and today.
Taurie - hope your port is starting to settle down. You will be so glad you have it once chemo begins!
rosebud - nice to see you back - BIG congrats on your clear scans! I am so proud of you for quitting smoking cold turkey!
Cynthia - YAY! to you also on clear scans. I am sure you will be just as "taking it in stride" on Monday as the people you saw on your tour. I was in my chemo unit for so long I saw many people come and go - and not one incident of hysteria.:)
Welcome to Melissa - what a relief to be stage III! We'll be here for you as you begin your cruise with us next week. The initial boarding encompasses the whole month. An ooccasional day-cruise to test the waters, but the real launch to head for the high seas wil not begin until all passengers are aboard. The ones who have embarked early are just getting scheduled with the best spa-times, the comfiest deck chairs, the hottest bare-chested pool boys - fortunately this luxury cruise has accommodations for all!
Maxgirl - hope your mouth is feeling better. That ketchup is hard to resist!
playwriter - gyoza is an asian food - kinda like veggies wrapped in a half-moon of wonton wrap. They can be steamed or fried. My plan yesterday had been to have my final sushi lunch just prior to treatment. I love sushi and have to avoid it during treatment. But they called me in 3 hours early so that plan went kaput. The gyoza was my compromise. It looks like there are now 4 of us aboard with the TAC cocktail. Will you be getting Neulasta or giving yourself Neupogen shots - or do you know yet?
Welcome aboard Paula - I'm glad to hear you have a great support crew around you. That way you will be able to use your limited energies toward your sweet young'uns. I'm sure you'll do great. There are some days that feel almost normal!
Holly - how cool that your thoughtful friend found you a good solution for your PICC line. Much better to be able to do-it-yourself!
Patti - congrats on your clean scans, too. Sorry the drains are postponing your treeatment, but at least the PS promised you relief this Friday! Oh - and another TAC cruiser, too! I won't be going back to work during treatment. My bosses made it very clear that they could not adjust their schedule around my unknowns. Being a small office, they do not have to follow the laws of FMLA or any other for that matter. It's a bitch for the finances to take a hit like this at this time when we have a far more important fight ahead.

Gotta go get some hopefully not-too-bland dinner.
My Pug-boy has been waiting patiently for his supper, too!
Love to all
Lisa