Chemo May 2013

Teresa_G

Last chemo was 7/26, I lost the rest of the hairs on my head I had been holding on to in the last couple of weeks.  Those were really blonde, my new hair about 1/8" long is dark blonde to brown.  Most of my eyebrows are now gone, but I have only lost a few eyelashes so far.  My nails also have the lines in them but no yellowing and they feel fine....so far.

9/11 I was at a Formalwear Convention for work in Las Vegas.  My husband called and woke me up, told me to turn the TV on asap.  Got the TV on just in time to see the 2nd plane hit the other tower.  Las Vegas was eerily quiet while we were there the next few days and any time I was in the room I had the TV on getting the latest reports.  Fortunately we drove to Las Vegas (6 hours) because there were a lot of people stuck there with the planes grounded. 

I will start reading the rads boards, don't want to......but need to.  I hate this shit.  Glad you are here, you are my support group!  I still have mixed emotions on doing rads, the gray area sucks big time.  If I HAD to it would be different.  I won't start rads until after I heal from my exchange/boob lift surgery, so probably end of October to first of November for me.

ItIsWhatItIs2013

Home from my rads simulation. I start next thursday. I left unclear of how many exactly. My RO says she "likes" to do 25-28 whole breast and then 8 focused on my tumor site. I guess I'll know exactly how many she set me up for next week.



Disturbing today was that she said that my surgeon had to get as close to my skin (my lump was in my upper chest toward the center of my chest. I didn't even think it was in breast tissue) as possible and it WASN'T a clear margin like my surgeon had told me. So she really wants to zap that area. I asked her as I'm tearing up "you mean I still have cancer that he couldn't remove?" she hym-hawed a bit and scoured through some notes in my chart & said that it looks like he got a clear margin on my second surgery that was suppose to remove a clot...



She also told me that 5 nodes were removed. NOT 3 like my surgeon told my husband and I ....



I don't know what to think. I'm a little freaked out about receiving 2 different reports of my surgery.... I hope she's not covering for him when she tells me he got a clear margin after the second surgery. Why would he have told me that he got a clear margin after first surgery if he didn't? Ugh!



I'm scared now that I still have some cancer that he couldn't get to.... Hopefully chemo and rads are able to kill what may have been left....

ItIsWhatItIs2013

Oh... Sorry! I got off on a tangent about my surgeon...



The apt today wasn't horrible. I laid on a CT table while the tech put marks and stickers on me, then the RO comes in and draws a couple more marks. They did a CT scan with me holding my breath with lungs full of air and again without air. I got a freckle size tattoo on both sides of my ribcage and one in the center of my chest. I was in and out in an hour and a half... My anxiety was the worse part. I've been dreading this starting... Angry that just when I start to feeling normal, I have to start a new treatment... Bla!



I hope everyone els is doing well....



Lorrie

lpc

Lorrie thanks for the description. I go Monday for simulation. Making son go because I will need xanax for the cat scan. I am expecting 28 rads because I had mastectomy. I too am dreading rads. Not sure why since its supposed to be easier than chemo. Maybe this treatment break has been nice and not looking forward to starting again. I will start Wednesday or Thursday next week so we will be going thru this together.



Kobrien I am praying that ultrasound was good and you are out enjoying yourself.



Lisa

Pattysmiles

Lorrie,

Call for copies of your reports.

Re-read what is in them.

Hopefully it will put your mind at ease.



Cancer sucks.

Pat

(Btw, glad simulation wasn't so bad.)

Debwarrior

Kate, so glad your surgery went well. Take it easy. Lisa, glad you got good news. Kobrien, thnking of you. Arya, I hate it when people question my treatment plan too. Seems insensitive.

Pat, I've heard great things about NOLA--it is supposed to be the best place to get your DIEP done. I would have gone there but my insurance didn't cover it. We are one day apart on our surgeries as mine is October 1. Good luck to everyone doing rads. It can be tiring but not as tiring as chemo. I have also lost my brows and eyelashes, one month after chemo. Looks weird. I've been using eyebrow pencil but not eyeliner. Does that help? Met with plastic surgeon today about my double mastectomy and upcoming DIEP. I think it's the right thing to do, but I keep having crying jags about it. Can't seem to totally accept it even though I know I'm going through with it. Going to have to come to terms and peace with it soon though.

lpc

Deb how did you decide to do prophylactic mx. I am struggling with decision to do right side. On one hand I feel it might relieve some worry but on other hand I like having nipple with sensation for when I ever feel like having sex again. Dr assures me keeping right breast is fine but recent scare has me worried.



Lisa

robin_in_SJ

Hi Ladies,

Lorrie, I don't blame you for being upset with conflicting reports.  I would call the BS and ask for a copy of the pathology report.  I have a copy of mine, it tells how many nodes were removed from what level and how many were positive.  4 positive on level 1 and 1 on level 2.  It also indicates clear marings (barley) and a lot of other details about the location of the tumors (I had cancer in each breast that were different).  

I also had my radiation planning session today.  I had planned to go by myself but since my last Taxol I have been havingmajor issues with fatigue and my legs are so weak I walk around hugging walls. Last night DH he would drive and work remotely from the hospital. I so wanted to start to do the radiation on my own and I know he'll have to work this weekend to make up some time.  

I didn't have to hold my breath during the CT scan but before they started they made a body form from some type of bean bag that supports my hands, neck and shoulders.  I had to hold onto two handles over my head.  It took 3 tries to get the form to fit.  Once it was fitted I got my stickers, a wire and dots drawn.  After the CT they took pictures and then did the tattoos. The hardest part for me was keeping my arms over my head.  I tried some deep breathing to help relax but the last 10 minutes were very hard. f I'll start rads on 10/1 and have 28 sessions.

I only have a few lashes left and my brows which were think are almost all gone and I now draw them on.  My fingernails are holding up okay but my big toenails are turning black.  I hope they'll hold.  

-Robin

Pattysmiles

Deb,

I learned of NOLA from these boards.

My insurance does not cover this in network.

So it will be billed as out of network. I have already met deductible. My responsibility will be 20%....so much for putting money away for kids college! That's ok, I am used to something coming up if I ever get money...this time I get to spend it on me! (Though not exactly what I would have envisioned spending big bucks on! Lol)



Lisa...I had partial mastectomy (lumpectomy) for my BC on rightie. They reduced the size of leftie to match and gave both breasts a lift. I still have a VERY SMALL amount of nipple feeling but nothing like it used to be (darn!).

I came to the decision to do double mastectomy because of 3 tumors not found on MRI but were in my margins. This left me with very small margins and doctor wanted to go back for more. At first I agreed, but as I was driving home from her it occurred to me that the "state of the art" MRI didnt find these 3 tumors, what else is in there? And what's in the other side? I don't know that I am reducing my risks, but I am giving myself SOME peace if mind.

I am a big "pro, com" person. I wrote the pros and cons for redoing surgery to get better margins and have rads vs. double mastectomy with reconstruction. After I put all my thoughts on paper the answer was clear to me, for my own situation, knowing my own brain.



Pat

Pattysmiles

Oh, almost forgot to say.

DH hubby has decided we should be married in the Catholic Church.

BEFORE my surgery on October 2nd.

Met with the priest today.

We are getting married this Sunday , you know, just in case I kick the can I will be in heaven (or hell?) waiting for him.



I told him perhaps I should update my will. He was more concerned that the old ball and chain be remedied in the church.



Now I have to find a fat dress again. (Not looking for white!). Sigh. What is it that he doesn't get.

Fat, hair that is awful, missing eyelashes, nails that are shredded. Yep, I will be a BEAUTIFUL bride!

2 days to get my crap together.

I love a challenge!

Maybe I will wake up Sunday and "the old Pat" will be staring me in the mirror and I will find out this was all only a nightmare!



Pat

ItIsWhatItIs2013

Robin...

I forgot the part about holding on to "handle bars above my head........"

Felt so exposed the whole time. They try to be respectful & make you comfortable, but I felt a bit violated... Like through all of this so far..... You would think my modesty is out the window by now, bUt I can't seem to shake it... I almost panicked during the CT scan, but my daughter sent me a text pic of my grandson today and told me to think of his pure smile while I was at my apt. I did & it calmed me a bit.... I know it sounds cheesy but it really did work.

ItIsWhatItIs2013

So the hubby came home tonight & I told him what I learned about the "not" clear margins.....



He says that the doc was just covering his butt telling us "clear " margin & on paper that it was questionable. I tried to explain that the doc doesn't write up the pathology report, but he still holds true to what my surgeon "told" us after surgery.



I'm so confused & upset! I hi-5'd the doc when he said clear margin.... Now I'm just thinking he lied to me. True or not, I'm a mess worried, now, wether or not I still have cancer that he didn't get out. I hate this! Seriously! I sure don't need anything else driving me crazy right now!



I've arrived at crazy, and am thinking about running for president! LOL

carla53

Lorrie I'd really be upset too if I thought I had clear margins only to find out this late in the game. Maybe the doctor told it right and maybe it is the RO that messed up. Getting your reports is a good idea.

Pat I will be getting a FLAP after the rads. I would much rather get a DIEP. I've heard of many women being very satisfied with their results and the recovery is so much better. And it sounds like you will be having it done at a very reputable place. Those are a few good pros.

Robin so sorry you are being knocked down by the taxol . Good idea about focusing on your grandson.

Pat I'm a little confused. Are you and hubby renewing your voes? Very sweet. Never a dull moment in your life.



Going in the 26th for rad simulation. The fun continues.,..Not!

Have lost almost all my brows and eyelashes also. Ugh

Our 21 year old daughter arrived the 10th. She's been living in Brooklyn the last couple years and loves it there. Really have been enjoying her.



Carla













Carla

lpc

Ok so now simulation sounds like a 2 xanax day. Hadn't really thought about fact I would be uncovered. Guess I put that part out of my miind.



Lorrie go get those path reports and review them again with mo to get an explanation of what is going on with those margins. You need the peace of mind before moving on.



Patty wedding ceremony in 2 days! Wow. Have you guys been talking about this and he just decided time is right? I have been doing the pro/con thing just still having a hard time emotionally with losing 2nd breast. Sigh...I never really thought I would be in this place having to make these decisions.



Lisa

Ukkate

Lorie - I agree with everyone else.  Go get that path report.  Or call your onco or your surgeon.  It's your information so you deserve to have it all.

Patty - are you not married right now?  I will have to go back and read your "introduce yourself" thread...too much oxycodone!!

So day 2 of healing was worse than day 1.  I was really sore yesterday and itching a lot, which got me worried that i was developing an allergy to Oxy.  Took a benedryl at bedtime which totally knocked me out.  Taking a shower might not have been a good idea either.  My regular breast is now bigger and higher than the "foob" - which I guess is normal as it's swollen and will drop some.  What a week huh?

And the Jets lost last night  Of course, I slept thru the game!!

kobrien

Hi all--

I rescheduled my ultrasound from Wednesday to today. I had the chance to go away overnight with my hubby- so I went for it!!

Got a few stitches in my breast at the PS office in Monday since my incision opened up and was leaking..

Question for you ladies-- starting my tamoxifen this morning.. How are all of you on it doing?? Don't know why, but I'm nervous starting it..

Have a great day all!! 😃

Kerri

robin_in_SJ

Pat, you are too funny!  Congratulations!  I can't image planning a wedding in just a few days.  I'm glad you'll be able to pull everything together.  

 I also decided to have a BMX, there were spots on my leftie and when they tried to biopsy the spots they couldn't find them.  After the mamo didn't pick up the cancer on my rightie, I no longer had confidence in screening tools.  I did have cancer in both breasts which validated my decision.  I would not want to have to go through this treatment again.  The BS said that the  cancer in the left was small but would be something that I would have to deal with in the future if I didn't have a BMX.  

Kate, I hope day you feel better today.

Lisa, good luck with the simmulation.  Xanax would help, if I had to do it over again I would take one.  It was the last few minutes when I became anxious because my arms were so sore but I have some cording which I think contributed to pain.  The techs and Dr were great.  

Lorrie, don't let this drive you crazy.  You've been through to much and for peace of mind you need a copy of the path report. Hang in there.  

I'm starting to feel a bit better today, I don't feel like I'm going to fall down the steps, I just take baby steps.

-Robin

Debwarrior

Kate, I'm sorry your day 2 was worse. Hope the healing goes quickly for you.

Pat, I have an HMO and they wouldn't cover anything at NOLA so I would have had to pay 100% of the cost.

Lisa, whether or not to have a prophylactic mastectomy, I think, is such a huge and personal decision. When I was first diagnosed with BC, 16 years ago, I went with a lumpectomy and radiation. I don't regret that decision because it meant I got to keep my breasts for 16 years. I'm doing the prophylactic mastectomy because I have the BRCA1 mutation and only found out about that a year ago. I know several women who have the genetic mutation who haven't had cancer and have decided to just do increased surveillance with MRIs and mammograms, but since this is my second time with BC, my docs all strongly advised that I have the double mastectomy. Best of luck with your decision.



Deb

JennaJMU

Finished chemo today! It was an amazing day with lots of family and friends there to see me ring the bell, pumpkin cupcakes with cream cheese icing (with pink ribbons of course!), and a house all decorated in pink balloons and ribbons by the neighbors! I'm so happy to be done! My prayer is that this is the last time any of us will ever do chemo in our lives!

kobrien

Congrats Jenna! Its a great feeling to be done!!

Whoo-hoo 😃

Annie54

Congratulations Jenna! A huge milestone - Enjoy having come this far!

Annie

Pattysmiles

Carla, you have plenty of time to look into DIEP if that is something you want to consider.



Regarding the wedding. Yes, more like a renewal of vows. We were not married in a Catholic Church...so I have heard on and off from the older Catholics (his mom, my mom , etc) that the wedding is not recognized by our church.

Our wedding was officiated by a minister (at the top of the Empire State Building). So we are valid by law, just not by church.

I guess he wants this valid In the eyes of the Church so if I croak during surgery I will be legitimately married before God. (Yet I would be dead, so why should I care? Lol)



Anyhow, if this will make him happy so be it.

I hit the Good Will store today and found a dress I could wear for the wedding. Then had to go get shoes (payless) and one of those Spanx type things to hold all the fat in so I could wear the dress! Thank goodness for a Kohls sale and I have their 30% off...I won't shop without it!, that is where I got the Maidenform "hold in the fat" item.



Saw two different dresses on clearance at sears for my daughter,($8.00!)... But wanted her to come back to pick it out and try it on. Only she is so happily playing with friends that she doesn't want to shop. (Definitely gets that from her father!)



Anyhow, I think the final thing I need is a head covering. If not, maybe I will go "drag" and wear my thinning, short hair!



Excited to be doing this in the next two days but also don't really want any pictures of this time! ....can only wish I were a few (okay, a lot) pounds lighter and had my own long hair!



Next debate is to go pick up my mom from PA so she can be here....such a freakin pain in the a$$.



Pat



Pat

lpc

Jenna. Good for you! Great feeling to be done with chemo isn't it?



Patty there must be some pretty hat you could wear or simple veil type thing. Oh and I love hearing that you like kohl's. Gotta love those 30% coupons.



Thanks everyone for their insights into prophylaxis mx. Think I am leaning that way. Will go talk to bs and ps about my options. I have to do rads first so have time to consider all my options.



Lisa

carla53

Jenna-Congratulations!!!! What a great support group you have at home. Sounds like youare loved by many. )



Pat ' It's great you found dresses on such short notice. AND a deal. That's the best part. Hope it goes o.k. with your mom..

I have looked intoDIEP and it would be my preference. My insurance covers what is done in my county and only emergency situations n the outside. Haven't found anyone here tht does DIEP....hmm. ...think I'llcall the insurance company to see if since it isn't done in this county, if they will go outside the county. Now is a good time to do research, done with chemo and a break before radiation. Thanks for the discusssion. it's getting me off my behind.



Hope everyone has a good weekend. Pat have yourself a memorable time. Jenna hope your S.E.'s are minimal



Carla

Pattysmiles

Was reading about the benefits of Manuka honey for wound healing on another thread.

Then I looked it up and apparently it is good for a lot of things.



Here is a link for info on it if anyone is interested

http://www.webmd.com/a-to-z-guides/manuka-honey-medicinal-uses



Pat

ItIsWhatItIs2013

Pat... Re-newing vows, yay! Maybe my sweetie and I will remarry...... Someday... LOL



I just wanted to share....



Hubby and I met after work at the S liberty grill for our Friday night date.... I put $40 in a machine and cashed out $240.... Yay!



Later he's asleep on the couch while I'm watching " house of cards on my iPad & I get up and give him a smooch...... You know why?



Because I would just now be feeling yucky from chemo treatment on Thursday ... Only, IM DONE! WooHoo.... I'm feeling just fine now! Jenna.... Soon for you! Congrats on being done!



I still have a tiny bit of numbness in my right foot, but I'm gonna survive! I'm so happy to be done with chemo!!!



Called my surgeon to request pathology reports from my surgeries & will see..... I am not going to worry this weekend! I'm going to enjoy feeling GOOD!



Love you all & hope you are all feeling as well as possible!

carla53

Lorrie I am so so happy for you.



Carla

Pattysmiles

Lorrie..woo hoo!



Must be a good karma in the air. Yesterday for me was like nothing could go wrong. I should have played lotto.



Glad you are feeling better!



Pat

Pattysmiles

Ok

Yesterday all I had to think about was finding something for this wedding tomorrow and I would walk into a store and find what I was looking for, either on clearance or on a really good sale with a coupon.



Today my mother has said she will come for the wedding tomorrow. Which means I had to clear a path in the garage as she tends to trip on almost anything. (Garage access is direct to here living space). Moving "crap" around and I notice a pink "blob" spreading. The man I am going to say "yes" to again put a gallon of paint away without securing the lid...naturally it spilled. My stress level has just moved up to a 12 on a scale of 1-10. Damn it! And needless to say a lot of "why am I saying "yes" again to him? !



Spill cleaned as best I could, thankfully I didn't paint my nails yet! (Or perhaps I could have left them the pink paint color!). I have given up on scrubbing the paint stain off the floor. Let it serve as a reminder of the stupidity (his or mine, pick one , ha!)



Praying yesterday's good karma comes back. I need to get my "guest room" (aka clutter holder) cleaned out for my mom and I need to head out to see if I can find a place to serve 17. Debating to bake my own cake (it is a hobby of mine) as I believe it is a bit short notice for a bakery...and I HATE bakery cake anyhow.. And need to figure out some sort of bouquet thing for my daughter (age 10) as she is sooooo excited. Really didnt want anything fancy, this is already a step up from what I thought it would be.

Asked hubby to figure out the boys clothes (thankfully they have dress pants from the Christening last week...need to find where the heck they are!) and it will be up to him if they should where shirt and tie....because really, do I have to do EVERYTHING, lol



Ok, good news is it is HIM picking up my mother and it is 2 hours there, pack her up and 2 hours back. I can curse him out all day and he won't be here to hear it.



Did I mention my entire dining room is pulled apart so I could get all my cake decorating supplies organized? - It was on my list of "shit to do" so i started that yesterday thinking i had all the bins i needed...NOT! And I wanted a wedding Sunday? Wish I had some of that Ativan you all talk about. I would eat to de stress but I think 1/2 ounce more and the dress I picked up yesterday won't fit me tomorrow! Lol



Ok, thank you for listening, I have gotten it all out. Will find some "happy music" on the car radio and try to turn today around. I am woman, hear me roar!



Pat

kobrien

Pat-

Hope you have a wonderful wedding day tomorrow!

Kerri