February 2010 Mastectomy

Hey Karen, here's a {hug} for you.  I'm in the March chemo group and yes it's a great support with ladies all going through it together, helping and advising and supporting one another.

Best wishes ~ prayers ~ {{hugs}} all around PRN

I've been visiting the site for the last six weeks and finally decided it was time to join in.  My surgery date was February 25.   Because of all of you, I was prepared for my unilateral mastectomy (delayed recontruction).  I knew what to bring to the hospital, what to expect with the drainage tubes, and to make sure I took my pain medication.  I can't imagine doing this without this site.  Many thanks to all who share their experiences.  

Kayne, Karen and Laura - my chemotherapy wasn't as tough as I thought it would be.  Don't assume that all your side effects are from the chemotherapy drugs - some that I found troublesome were actually from the other drugs - especially the steroid and the acid blocker - and you may be able to  cut back on those.

I always had lots of soup on hand - didn't want to drink too much sweet stuff, and got tired of plain water, so soup was a good alternative.  I also always liked cottage cheese.  I was never nauseated or even queasy.  I didn't feel all that bad, but didn't sleep well, so it was hard to feel good, either.  Mostly it's a matter of waiting for it to be over with.

guardianangel - did you get the tinting done at a salon?  What did they use?  I've heard you can use henna, but haven't tried it.

groundhog - I was all set with the dangly earrings today, but no one rang the doorbell.  Well, UPS driver, your loss.

Hi ladies, hope everyone is doing well and feeling good tonight!

Lands' End fleece is THE most comfortable thing to wear next to my skin, does not irritate bmx site at all and feels sooo comfy.  I found fleece caps for $5 in their overstocks so bought a couple to use as sleep caps.

Hair is going, going, getting thin but not gone yet. Lots in shower drain last two days and just plain falling out all day today.  Have a hair appt Sat to get what's left buzzed off. 

Chemo tx #2 tomorrow starting at 8:30 with bloodwork, all prayers greatly appreciated. {{hugs}}

Greetings again!  I haven't check in lately -- it's been 4 weeks today since my surgery and this last week I truthfully haven't wanted to leave my bed!  I don't know if it's my body telling me I'm overdoing things or if it's depression.  I did use alot of this "down" time to plan a family vacation this summer -- Costa Rica for the month of July!!   But now that that is done, I'm just feeling miserable about spending so much time sluggish and tired.  It was comforting (in a weird way) to see some recent posts about chest tightness and that, how did you say it Chalex?  numb, puffy lump under your arm.  I've been worried about that same thing!  Weird isn't it?  I still need a pain pill to make it through the night -- is anyone else still using pain meds this long after their surgery?

Cyber hugs to all ~ Debbie 

groundhog, we'll be thinking of you tomorrow. By the way, that's a great idea about the Lands End fleece caps. I just ordered a couple for myself. I probably won't be losing my hair for another month, but it can stay cool at night here in Northern California. I tend to get too warm a lot of the time, but I bet having no hair will make a big difference. I had gotten myself a couple of Lands End fleece button-front shirts before the surgery, and those have served me very well in the first few weeks. They get too warm during the day now, but they were great in February, and they're so soft against the skin. I'm a month out, and my skin still gets very sensitive.

dbdaze, I'm just past 4 weeks and still take something for the pain, especially at night. I've been trying to do just with rx-strength ibuprofen most of the time, but I still have more vicodin if needed. I also take an Ambien to help me sleep, but I'd had insomnia a lot even before this all started. I say that if taking a pain pill (or a sleeping pill) helps you get the rest you need, there's nothing wrong with taking it.

I saw the PT today to get exercises to prevent lymphedema and to be fitted for a compression sleeve. I asked about Wii games, and she suggested I start with hula hoop and some of the others that don't use a lot of arm movements, but also said that to make sure I do use both arms when I can. I had a bilateral, but my right side did not have the extra lymph node dissection that the left did. I'm right-handed, so it's been nice getting some strength and flexibility back on that side, but I should try to use the left when I can. I'm probably not up for boxing yet, though

Groundhog - prayers to you on your second tx.  I hope you take it well and are not too tired.

Debbie - I am 4 weeks out and still take pain medications daily, I have had some side issues and a second surgery last week to take out nodes, sometimes I can get through the day with just motrin and other days I need something a little stronger.   My nurse told me yesterday that if I over do it on a day I will feel it the next two days and I believe her.  Last night was the worst night for all over pain/achiness that I have had since I came home from my TRAM surgery and I think it is because I have been really doing the arm exercises multiple times a day for my left arm that had the auxiliary nodes removed that I am putting too much pressure on my abdomen muscles.  I have also found that being tired makes my body feel sorer.

Karen - I went to the Onc yesterday and here is what they put me on (might be the same as you).

Dose Dense - 8 doses over 16 weeks

4 doses - AC ( Adriamycia and Cytoxan) combination along with anti nausea medication.  Will be following up on day 2 of each treatment with a shot of Neulasta to boost my white blood cells.

4 doses - Taxol.

I will be scheduled for a catscan of my abdomen, a bone scan and a heart ultrasound prior to starting any of the treatment.  I won't be starting until my stomach heals which is happening slowly they think because I have become anemic.  Chemo should start the end of April beg of May.  I am off to get a multi vitamin and iron pills today.

Question to anyone that has been through this cocktail - Did you work through this?  How did you feel over all?

Have a great day!

Faith316 - Thank you for providing such good information.  I will be receiving Emend via IV while I am at the center and then by pill on days 2 and 3.  I will also be taking Aloxi and Decadron via IV for nausea.  Not so sure what I think of Decadron because it is a steroid, need to ask a few more questions about it.  I am trying to decide if I can work through this or not.  I have a type A personality and was working on a very large international project prior to going out on Disability for my dmx.   I was working lots of hours, 60  - 70 plus on a regular basis.  My boss said I can work from home and just do small projects but it worries me about how easy it would be to get back into long hours.  We have lot of meetings late at night and then early in the AM.  I have worked really hard to get a good reputation at work and I am afraid I will ruin it if I can't do my job fully and people have to keep picking up the slack for me.  I know people will be very helpful and understand, but Chemo goes on for 16 weeks and then I may have radiation and then my tram's need to be completed so I am not sure what I should do.  I have a pretty good 6 months  short term disability policy through work that started Feb 29th and the I have a longterm disability policy also that I pay into that I could use if needed.   I am trying to figure this out because I need to figure out daycare for my 9 and 11 year old.  It will work out I am sure, I just hate loose ends.  Thanks again for  you info!

Laura, our dose dense chemos sound the same. It's looking like 4 months instead of 6. I had the bone scan already. It's pretty easy except that you have to be very still for 30-45 minutes and the machine's panel is very close over you. I recommend that you close your eyes before it's moved into place and don't open them until you're sure it's somewhere down your body rather than over your face. I'll have the heart scan next week.

Gina, I've had a similar thing with the swelling under the arm where the nodes were taken. They drained a little on Monday, but I don't think it made much difference. I think we're going to just see if it reabsorbs, but in the meantime, it's annoying and uncomfortable.  Good luck when you go back to work. I've had some people who've been out a few months on maternity leave recommend that I start back on a Wednesday or Thursday when the time comes, rather than on a Monday. That way your first week back is a short one. Maybe that would work for you.

Hugs to everybody,

Karen

LauraM --

Glad to hear of your upcoming trip  -- it will be a wonderful diversion!  I just find it comforting to research possibilities for future vacations...I think I just need to look beyond my current status and envision me happy, healthy and without pain.

I literally spent the majority of the last two days in bed. I woke up this morning determined to be productive and I was -- grocery shopping done, fridge clean, and laundry washed, dried and folded.  I think it relieved my husband to see me up and about.  Felt good but so will sitting in the sun with a cup of coffee!!  I'm off to soak up some rays. 

Hi everyone,

I had my BMX on March 1st so everyone on my March MX site had surgery after me. I am here for advise from you Feb. girls.  I actually feel pretty good, did not do recon. I am doing my arm stretching and can reach my straight up, my elbow to my ear. Have lost my appetite though.

I meet my oncol on april 1 and am nervous.  I see you all going into chemo and it helps to see that I can get through it too.

Thanks all! 

Faith316 -

The oncologist disagreed with the surgeon about what they believed was a lymph node on my right side so back for a biopsy to see who is right!! UGH!! I should have just had a double and been finished.  Then we are addressing the microinvasions that are IDC and what to do.   She put on some medication for two weeks, while waiting for the bloodwork and found out my body was not absorbing it.  So not sure what plan is next.

Thanks for the support!!

Olivia 

Laura: I have not gone back to work yet. I'm currently on short-term disability, and after April 13, it converts to long-term. I think I've decided not to go back right away, since my chemo will be four months instead of six and I may be able to go back even before the end of the four months if I'm doing well. From a paperwork point of view, I'm sure it would be a lot more complicated to go back to work then maybe need to take time off again than it would be just to extend my original leave. Luckily, there's no pressure from my job to try to go back early, although I'll be on 2/3 income during long-term. Ironically, I got this job initially as a temp gig to cover for someone out on leave for cancer. She tried to come back early a couple of times and found it too challenging. Maybe that's influencing me. She ended up just retiring at the end of her year off (at our job, at the end of one year of diability, you must return to work or leave the job). On the upside, that let me convert to full-time.

My job isn't physical but it does require clear thinking. Along with potential nausea, getting chemo brain is one of the things I'm most worried about with chemo. On the other hand, being off work would probably make me less sharp anyway.

Olivia, I'm sorry to hear you're going through all this again. And to have to wait a couple more weeks to find out the plan. Sometimes the waiting is the worst part. I hope the results are favorable and you can get started with the next stage.

Bulldog, it sounds like you're doing pretty well with the range of motion. I had a bmx on 2/23, no recon, then additional nodes on the left on 3/11. My right arm is doing really well, but I still have issues with the left. I've been doing my exercises, though, so I'm hoping it's just being slow. I hope to be able to match your flexibility soon. Be sure to talk to your onco if your appetite doesn't come back. You need that good nutrition to handle surgery and everything that comes after. And sleep! If you can get something close to a good night's sleep (or afternoon, for that matter), it will help.

Hugs to everybody,
Karen (caltex_catlady)

Olivia,

Good luck on your appointments and I am sorry you have to go through this again...ugh.  This was one of the reason's I chose to have dmx, I knew I couldn't go through having to have everything tested all the time.  My prayers are with you!

Karen - thanks for you insight on going back to work.  I am worried the most about mental clarity, I have worked hard at my career and I have a good reputation and I am a little concerned that if I go back to early I am going screw that up.  I will think more about it while I am on vacation.

MNLinda - Thanks for the info on Chemo, I am a little worried about the steroid and the effect on my but will have to see how that goes.