Starting Chemo March 2015

you are so right, Italychick. Really hard to nail down consistent numbers. And of course each situation is unique. The one thing I didn't even think to mention was the HT (tamoxifen or an AI) which my MO said based on Oncotype dx of 30, 30% chance recurrence if surgery only, the HT for 10 yrs! (Really? Ugh) reduces it from 30 to 20, and the chemo in addition to HT only reduced it another 4-5%. I wasn't feeling lucky.. So here I am.

My scalp really hurts tonight. Day 17 blues

HAPPY BIRTHDAY, KATY! Wishing you a day filled with joy!

Shaz, I hope your CT comes back clear! Didn't you say you had migraines before your dx? I've had them, infrequently, my whole life and if stress is one of your triggers, makes sense to me that you might have them more often right now. I know it's hard, but try not to worry, okay?

As for eating...Other than my diet being a little sugar heavy, we've always eaten pretty well. I love cooking so we rarely do prepackaged/processed foods. Lots of fresh produce, mostly lean meats, etc. If anything, my dx has made eating well worse for me because, for one, I have to watch the fresh produce now. So far, I'm limiting myself to peel-able fruits, nothing else raw/uncooked, and you'd think I was being tortured, LOL.(No fresh berries gives me a powerful sad.) For another, getting the diagnosis provoked utter paranoia about what I should or should not eat, so much so I wasn't eating a whole lot because I was so afraid of making it worse and lost quite a few pounds. My MO essentially told me to stop it, just to eat. Whatever it is, EAT. Once I get this next book out, I'll have more time to research diet and will likely have talked to a nutritionist, but until then...I'm just eating. LOL

About the prophylactic bilateral...This is months down the road for me, when I need to focus all my energy on the step I'm on now. Once I reach the surgery stage, I will have learned a great deal more about it, for sure. But for now, I'm thinking a prophylactic on the right, no reconstruction, and a prophylactic hysterectomy as soon as I'm strong enough afterwards. Extreme? You bet. But I'm not like most of you guys. I'm not stage 1 or 2. I'm 3 and not even a good 3. My chances aren't half as good -- literally. I could die. That's no exaggeration or melodrama. This could kill me. I'm a positive thinker. I don't focus on the odds. I can't or I'd cry myself into a puddle every morning. But the brutal facts are I may not be here to see my son graduate from high school in 4.5 years. Which has been wonderfully clarifying, honestly. Losing my hair? I'm still alive. Not a big deal. Cutting off my boobs? Still alive, no problemo. Basically, if XYZ buys me even a 1% higher chance of seeing my son in his cap and gown, I"ll do XYZ. Gladly. There is never any moment in the day that I'm not fully aware I'm fighting for my life. And no matter what I do, that's a fight I might lose. If I do, I'll go out knowing I gave the fight my all and carpe dieme'd the crap out of every single day. But generally speaking, I don't consider myself a woman who has choices. Other women can choose to skip chemo. Not me. If I don't do it, I'll die. Other woman can take a pass on radiation. Not me. Without it, I'll die. Other woman can get newer perkier boobs. Not me. Higher risk if I leave skin for that so reconstruction is bursting with nope, nope, nope! To me, the only choice I genuinely have is attitude. I will not cower. I will not flinch. My happiness is defined by me, not my circumstances, and as long as I hang onto that, I'll be peachy regardless of what path this journey takes.

PrincessOfMeh- Your calm logic in the face of chaos amazes me. Your bravery in the face of "odds" has me in awe. Your attitude has humbled me. You have inspired me this morning, on an already special day. I am proud to know you.

And thank you for the birthday wishes. I don't think I was ever so grateful to have one, and plan to do my best with it

Princess: I am kind of with you on the stage 3 thing. I still don't have the nerve to go over to the stage 3 area and read. I was restaged last Monday from 2 to 3. I kind of had a gut feeling because I knew my node was positive. I am starting to have those I could die thoughts a lot.

Also, I hope you don't think I was telling people NOT to have the genetics test. I just hate seeing all these women do it out of fear alone when the odds don't support them having the gene at all.

Katy: A great big huge HAPPY BIRTHDAY TO YOU!! I am so happy you have become a part of MY life, even if it's online. Enjoy your walk with Jack.

I have to laugh a little because I think I am the odd man out with the changing of the diet. I kind of think along the same lines as Katy with the barn door thing. And I am guessing I am going to have a hard time eating for a while. We try to eat well and not eat many processed foods but I admit I have a little sugar addiction going. I don't eat a whole cake or anything like that.

Shaz: I will be thinking of you today having your CT.

even though my bs said my prognosis was good, when I learned from the MO of the odds of recurrence within 10 years being 30% before doing HT and chemo, I started thinking a lot about dying. Not obsessing, but it does seem to be there always, like a little bird on a fence.

After years of working at rebuilding my life, I could, if I wanted, finally afford to buy a modest house. Right now I am living in a very cute little house, but it's a rental property. A month to month. Expensive. I keep flashing forward and imagine being too sick to move or to afford ever increasing rent. Not having room for family to come stay. Things like that. Dying in a rental property.

I mentioned these feelings to a very good friend who called me out, saying the steroids were making me manic, and that this is no time (meaning during chemo treatment) to even be thinking about a house. I lectured Shaz (in the nicest most loving way possible) not to make any plans to hitchhike around the world until well after chemo was over.

But still I persist in dreaming of being somewhere where I can't be forced to move at a time when I wouldn't be able to. I still keep looking at houses, though now in secret, to avoid those lectures I freely give to others myself.

When I look at houses I feel I am being proactive. I feel that I am planning for my future. Taking control. The whole "project" aspect of looking at a homely house and envisioning what I could do to make it look loved and cared for, expressing myself through paint and garden, offers me hours of entertainment. Helps me believe there WILL be a life after all this

This is what I'm contemplating while drinking my coffee, early on my 58th birthday. Crazy? Steroidal mania? Irresponsibility? Who knows. Just like we never know if we make the right choices for ourselves regarding treatment.

And like clockwork...my hair is starting to shed all at once. I thought it would hold off until our trip to Florida but no such luck.

Hi to All

Happy Birthday, Jackbirdie! I hope you are enjoying your day. And keep looking at houses...we always have to have goals and dreams!

I am happy to see birthday celebrations went well, and that you are still riding your bike, IC. My surgeon won't even let me get on my exercise bike. ugh. And I am signed up for the NYC 40 mile Bike Tour, May 3. I did my first 2 years ago at 55...and not sure I will make all of this one because of chemo...but really want to try! But no real exercise for a month... my legs are going to Mush!

To IC and SC, I am sorry to hear about your hair and irritated scalps...it seems I am exactly 3 weeks behind a number of you, schedule-wise, as my first infusion is this Thursday, 3/26. I have been trying to calculate when to buzz. Seems around the 16-17 day after first chemo?

My anxiety is mounting. No chemo "classes," just given instructions for pre-meds...and then Rxs came with different dosages and instructions...so guess I need to make some calls. Ugh...mistakes make me worry more. I don't want to feel anxious...does anyone use Ativan or Xanax for anxiety? Can that be taken on infusion day?

I am wishing everyone well, trying to keep positive and busy (not always working-feel so emotional, too often), praying everyone's SEs stay manageable, and wishing Spring would hurry up to NY.

Happy Monday...

arlene

I LOVE looking at real estate. I used to be a real estate appraiser for a while in my former life.

Molly: I would have someone bring you home. Are you getting a sedative? Because I f-up and had clear liquids after the allowed time (my mind wan't functioning properly), they could only give me a mild, mild sedative. It was absolutely enough and fine but I wouldn't have wanted to drive home myself. But if they are putting you out, they will make you have someone drive you. I don't even think they would have let me drive.

Molly --- YES!! you will not be able to drive! I just had mine this past Thurs.  I was not completely out but really woozy and then after it was done I was really tired.  Fell asleep in the car on the way home!

I know not many of you had a port in your upper arm but would that cause pain/shortness of breath in upper chest for any reason? It's not unbearable, just a little uncomfortable. I know they said it might cause shoulder pain.

and-- katy happy birthday!

greenae-- seems like day 16 - 17 for hair loss is about right. Yesterday wasn't bad, but today I can pull hair out just by touching it and it's shedding like crazy. DH said he's bringing out the clippers tonight. My son needs a haircut as well and he's afraid of the clippers so maybe seeing momma go through it first may make him less afraid (we use a vacuum hair cutter for him right now, it's the only way I can cut his hair).

Molly - As for driving after port surgery, you will need someone. They use "heavy sedation". It's not full blown out anesthesia but you're still given heavy medication and sedatives. You won't be able to drive. My first infusion was actually worse than this second one because I had my port and infusion on the same day. When I had my initial port put in (my first one was defective) I also needed a ride home. I honestly can't remember that afternoon!

1/2 way through the AC! Whew!

Ninjamary- loving your idea of the charm after each chemo. Fantastic job on the shopping A++

Happy birthday Jackbirdie! Hope you have a great day with Jack.