Starting Chemo in December 2013

DJJ- I can't get the link to work :0(

BRCA is also for our families as preventative. I am hoping I don't run into those issues. I meet with BS next Wednesday to discuss and schedule that. It will determine the fate of my ovaries and my remaining breast. It will also mean, if positive, that my daughter will need screening in 2 years vs 17 yrs. 

It appears this is the week for bad news. Had my CT scan with my mapping appt. I now have a petscan on Monday and an US w/fine needle biopsy on Tuesday. There is a lump under my arm, near where my drain tube was. I thought it was scar tissue, and it maybe, but the RO does not like the way it looks. It may be another lymph node. This would put me at 10 positive nodes and changes my Staging. Not nervous, back in fight mode. Will piss me off though, it will mean my treatments haven't touched it. That sucks.... So praying for scar tissue!!!

I'm screaming for you Robin!!!! AAAAARRRRRRRRRRGGGGGGGHHHHHHHH!!!!!!!! That's Bullsh#t!!!  I'm thinking about you.

I'll figure out a different link to the video. 

Hey Guys - my insurance turned down testing for BRCA1 and 2 also - BUT my BS put in for a test called BRCAplus

and that got approved for some reason and it tests for more than just those two genes

Here is link to the test information       https://www.ambrygen.com/tests/brcaplus

Mine came back negative

Robin and djj, so sorry about the detour! I am sending positive thoughts your way.

Mikesgirl, congrats to for another milestone!

It has been very busy here since I last logged on. Some good news and some bad news....I hate hearing all the bad news and my heart goes out to all of you. I was upset when I was first diagnosed b/c I am also divorced and thought now more than ever I needed a husband to help me make decisions and care for me but after reading your stories it reminded me of why I am divorced. A lot of men don't know how to communicate their feelings and rather bottle things up inside until they burst...maybe they think it is more "macho" like that. Most husbands though I believe are dealing with it the best they can but honestly don't know what to do or say. They really are much different creatures then we are. I am sorry for all of you that have that added stress right now. DJ's news blew me out of the water and all I can say is that I am praying for you. Vettegirl I think we are in the same boat. I am also terrified of facing all the decisions about surgery and how I am going to deal with self care afterwards.

Today was a very emotional day for me. I had my last taxol today and I am relieved that part is over but yet it had become a routine and I learned as I went how to deal with the SE's. I still have to go tomorrow for my nulasta shot and I have to schedule a follow up PET scan in 7 days and then see the surgeon. My sister and her husband took me to chemo but left early to get on the road to head back north so many tears saying good bye since when they got here I was just diagnosed and seem like every time we got together was either for an appointment, chemo or a day off on a outting but we always talked about the cancer. She will come back down when I have surgery. Then tonight all my kids and grandkids came over to do an early Mother's day and happy end of chemo party. They brought pizza, salad and a cake so it was a good time but very hectic with so many people over 21 (I think) altogether!!! I am just now sitting down in a quiet space and although I am happy to be done with chemo I am sad and very emotional about everything. Can't believe so many months have gone by...so much of my life spent on dealing with chemo and SE's and not being able to go about my normal life. Now what is normal when I don't have chemo appointments??? Well I am just going to try and get some sleep and just be happy that one part is over and not worry about what is coming next. Good night sisters.

DJJ, awesome speech! Yea for you...yea for us! (Btw I had no trouble see if it on your fb page)

Robin, so sorry for your new worry. Argh!!! Hang in there, we are there with you, we all get it

Charusa, congrats on finishing. Ya we get used to our appointments and when they are over we need to learn how to spend our weeks, days although many of us are still going. I have 4 weeks "off" now before rads. Hoping a restful night for you, but if steroids are in your infusions that may not be possible tonight, lol

DJJ - Your speech was moving.  You are a great public speaker.  Thank you for sharing and I didn't have a problem pulling it up.

DJJ & Robin - I am really sorry that both of you are having to deal with another obstacle right now.  This is the reality that we will all face anytime there is a lump found or something doesn't look right.   You are not in this alone, we all have your backs! I am praying for the two of you.

Keepthefaith - I think that the two of us are finishing rads at the same time.  My last day is the 15th.  What about yours?

Mikesgirl - We went to St. John last summer, the water was so calm.  Find out if the water is calm, if so bring blow up pool floats.... they cost a fortune on the islands.  White sand, turquoise water, wish I were going.

Oranje_mama - Glad to hear that your surgery went well and no node involvement.  Happy Dance!!!  

Char - Happy to hear that you finished chemo.   What wonderful family support you have.

Kim  

Kim, my last TX is the 14th. So far, holding up pretty good. Keeping my fingers crossed. How about you?

Michelle, my feet hurt in the morning and walking to the bathroom in the morning is a sight! I wouldn't say I have neuropathy, except for 4th toe on each foot feels numb (weird), but my ankles and feet are just stiff and achey. I walk like an old lady with little shuffling steps. They do loosen up. It is in the upper 70s here today and tried to put on my sandels that I wore a lot last summer and I thought they were comfortable last year but not so this year. They feel like different shoes. It's like, who took my shoes and replaced them with uncomfortable ones! In my sneakers or hiking shoes I can walk 2 miles, that's max.

Hi all, haven't been on or posting in ages, but just did some catching up here this week.  Happy to see so many of us post chemo, with whatever comes next.  To you ladies not so far in, just hang on and it will come.  The specifics of how bad it felt have a way of fading, unless I really try to remember (which I'm happy not to!).  Starting rads on the 19th, and so happy for the break right now.  

Michelle - YES to the aches, too!  I actually felt fine immediately after chemo.  But starting about 2 weeks pfc… getting out of the car, or out of bed, or sometimes up from the couch, feels like back when I used to lift weights and was recovering from a hard workout.  I'm walking, but wondering if more stretching would be at least as helpful.  I feel so tight and weak.  Wonder if my muscles have toxins they'd like to release.  

Charusa - I'm so glad to hear your family made a fuss about your finishing chemo, even tho it sounds like it wiped you out a bit!     I don't know if this would encourage you at all, but I remember at the end of chemo feeling like I had wasted the last 6 months, and still thinking of what it would do to our summer to have rads coming up.  But then yesterday, I ran into a friend that I know is going through a really, really hard time.  Instead of saying let's get together some time and talk, I asked her if I could take her out for coffee right that moment.  Instead of feeling like I needed to come up with something profound to say to help her - I found that it came much more naturally to sit and listen without talking for as long as she wanted, and cry with her.  When she cried in the car on the way home, instead of telling her I would pray for her - I pulled over the car and prayed for her right then.  And instead of telling her that if she ever needed someone to take her daughter for the day, to call me - I asked if I could come get her daughter today, and she's here now, while my friend is at home making sensitive phone calls that she didn't want her to overhear.   This isn't a brag - it's more of a confession of all the things I would have done wrong before, and hope I won't again.  I hope this means I will be better at loving the people in my life after cancer than I was before cancer.   And I'm trusting that we will ALL be better/stronger/kinder/wiser women now than we were walking into this trial.   Maybe not such a waste.

ok- just read it could be because of bone marrow and platelets stuff.  I guess if I don't go full cycle then it is no biggy.  I never want to have a cycle again:(. It will only remind me that there is estrogen surging in my body and I don't want that!  Does the tam pill stop cycles?

count it all, so good to hear from you again! What a wonderful testament to your lessons learned. Good for you! What a great friend she has...A silver lining.

oranje, glad you are feeling well!

char- I agree!   I hope I can help someone down the road.  I pray it is not cancer of course, but I see this journey as a long road in a dark tunnel.  At the end the opening is all light and wide open for us to take advantage and spread the word.  Live now, love now, be present, and be the person you really want to be everyday.  

The other day Tim McGraw's song "Live like you are Dying" came on.  Um wow- never really got it until now.  I don't plan on skydiving like he sings, but the message is do it now.  No matter how long I may be here (even if it is 50 years) I will try so hard to be compassionate.  

Char. Very true.  I am a part of a charitable breast cancer org in Orlando that is dedicated to helping others. Extremely fulfilling to focus on other and helps me keep perspective.  I've met young single moms, a 24 year old starving artist and another 34 year old (with 2 little ones) who's asshole husband left her the week of her BMX. 

From the moment the doctor told me it was breast cancer, I knew it would serve a bigger purpose beyond my own fight for survival.

I am extremely blessed to have health insurance, a dedicated partner, loving family, friends and co-workers from around the world, and a supportive employer. This “village” of support has, and will continue to, carry me through this battle. I can truly say I would have not had made it through this hellish journey without everyone's love and support.

What haunts me is thinking of other women on this journey who are not as fortunate to have a village. No woman should have to go through this without the resources, support and encouragement that I am so grateful for.