Starting chemo January 2009?

Wow Bev, you're done with rads!  That is amazing! I remember starting all this and having the sense that it would never end. 

Phyllis, congratulations on being done Friday!

The genetic counseling was great.  He spent over an hour with me, was liberal with the information and knew his stuff.  He'll recommend the test but I believe my insurance will not cover it, although he sent a pre-authorization form today so I will know soon for sure.  I promised myself I wouldn't make a snap judgement about getting it. 

We discussed the test's accracy, what are the meanings of positive, negative and unknown variant results, what are the chances of having other kinds of cancer, what are treatment options for positive results, what impact the information can have on family members, privacy considerations, how it can impact incurance coverage, and much more.  He told me that my blood could be drawn to go into a DNA bank, without having the test.  At any point, I could determine who in my family could order the blood to be tested later, to find out if I carry the gene(s), that is if their insurance will cover it or they are willing to pay for it.   

I'll post some of the salient details when I get his report in the mail abd have digested all the information a little more. 

I almost didn't look sick today.  I hope I can get back to the way I was over time.

I have to say, tip: I discovered last night that it's impossible to feel down after listening to the Pippin soundtrack.  

I hope everyone is feeling well!  Bye for now Jewels.     

  

Hello Jewels:   I saw my med onc today.  All my labs are good.  I'm set for the bisphoshanate clinical trial - will find out what drug I get within the next few days and learn when I start.   

We talked about my residual SEs - swelling, neuropathies, muscle aches -- all getting better gradually. Oh -- and the Arimidex hot flashes -- I told him after chemo this is all very tolerable - no big deal.  He said, "yeah, it's like fighting ants after you've tackled alligators".   How true!   

We didn't talk about genetic testing.. I have time for that. I am leaning toward not getting it - I don't think it will change our course of care.  Interesting notion of storing my blood for future generations, if need be.  

Bev -- Congrats on being done with rads.  6 more for me.  Not sure what I will do with all my time when I don't have 4 hours on the road... HA!   I have lots to catch up on --- like daily exercise.

Phyllis -- will be thinking of you on Friday --- LAST is such a great word!

Patti: Hang on --- your LAST is soon!!!! 

ddlatt:   hope you keep posting here for a long time -- you bring us the most useful information.  Thank you!

On June gloom --  you ain't seen nothing til you've lived on the south shore of Lake Superior in June..    My brother and I were remembering the joys of starting swimming lessons in the lake about this time when we were kids --  water temp at 50 degrees and air temp at 65 degrees -- no wonder neither of us learned to swim...LOL

Two days til my all night Relay for Life.  Have been fundraising up a storm - I've been pretty successful -- who can say no to a survivor!!

Take care all you survivors -- we are beating this!!!

thanks, kt57 and year. my patient advocate, elle stephenson in the san francisco bay area, sends me these links and updates. i feel so lucky to have her in my life! 

Glad to see everyone stopping by!!!  Got my hair colored today....wow!  It looks a million times better with all the gray gone.  It looks like I have a ton more hair....I highly recommend it!!!

CONGRATULATIONS PHYLLIS!!!  I am so glad you are done!

Phyllis--YOU'RE DONE!!! Big hug and congrats to you!

School's out for summer...hooray to me. I made it!! Lots of tears and hugs at work.

One of two radiation machines has been broken this week. Big backlog--canceled me one day (to add at end of tx, and some nights they had me come at 9:30 (got home late, reports, paperwork til late). I'm trying to pack for our flight to San Diego tomorrow. I'm really looking forward to my 3 nights at the spa hotel. My sister and family  is driving down to stay there too for my son's graduation. Unfortunately my mom isn't up to the trip. Hoped I'd have more hair, and eyebrows/lashes, but I'm too tired to care right now. Hoping my arm is ok--will wear my sleeve and gauntlet.

Jilly--I know what you mean about the suit. I just tried to pin in one of the fake boobs that my dd made from a bath poofy. I'm afraid it will just migrate down to my belly! Hope it works. I'll have to swim at night I guess since I'm supposed to stay out of the sun (reminds me to pack my swim shirt).

 Saw onc. for 1 month follow up. He will prescribe Zometa if I don't do trial. He will prescribe it at same amoutn as the trial (every month for a while, then to every 3 months, then less often. It might mean I'd have to keep the port for a bit. I need to decide. HELP!! He recommended the trial since Zometa hasn't been 100% proven better than other bisphosphonates, but will go with what I want. I forgot to ask about insurance coverage.

He is referring me for genetic testing since my dad's mom died of bc, my dad died of prostate cancer, and my brother had throat cancer--but mostly due to my dad. Thanks Jewels--I would not have thought to ask if you all hadn't mentioned it. Said I could have ovaries out if I had some other surgery going on, mostly to reduce cancer risk since I'm postmenopausal. If the genetic tests show a higher risk, then I'd get my ovaries out and the other boob off.

He'll do another tumor marker test in August. I didn't ask for statistics--kinda want to know but have read enough that I don't really want to hear. He said that he too is worried about recurrance, and they are watching me closely, but I just need to live my life, which is what I plan to do cuz who knows. Que sera sera.

Gotta run--Hugs to my jewels.

You gotta be glad Phyllis!!!!!!

Where do you buy a remote controlled fan?  I suppose I could shop for it myself, but a shopper I am not!  What a great idea.  I am so bad, I haven't even gotten the converter box for the tv!  Oh well,  no prime time for me!

Its Wind Tower by Lasko, got it on line from Wallmart.  Model #2517

http://www.walmart.com/catalog/product.do?product_id=10980410 

No time to read though everyone's posts right now.  Big Congrats to Bev and Plutz and everyone else reaching milestones.  I met with my Onc on Tuesday and my blood work was good.  I am now on Tamoxafin, which he says will do more then the chemo to keep the canser away.  I will see him every three months for the next year or two. The check ups will be blood work and a symtom check.  No tumor marker tests because he says they are great for tracking known tumors but unreliable for finding tumors.  No scans either.  I am a bit emotional about the tamaxafin because it it the final bell toll on my fertility.  I was unlikely to have another child anyway because of other issues requiring IVF to have any realist chance of conception and insufficient desire to go through that stress on top of a new house stress and then bc stress and age (I am almost 45 and DH is almost 52).  But there was the possibiblity of a miracle baby, that if we just kept doing what married couples are supposed to be doing something might happen.  But 2-5 years on a drug where pregnancy is contraindicated will bring me to age 47or 50 and that is just too old in my opinion to be starting a new life, at least without the finances to hire alot of help.  So I am letting go of the "mother" years of my life and moving on the the "crone" years.  DS will not have a sibling to share his life with.  These are things I would likely have had to face without canser but they are just being brought into sharp focus due to this miracle medicine which maybe saving my life and allowing me to be around a very long time for my existing child. 

That dear child graduated from preschool yesterday with a great deal of pomp and circumstance.  It was a very special day which we shared with both sets of grandparents.  Of course this is another rite of passage which is bitter sweet. My baby is growing up.  He will stay in the same place for the summer but then on to Kindergarden and all that implies.  A school bus instead riding in with me.  New friends.  After school programs.  School vacations to navigate.  More independence.  I am happy and sad at the same time.

 And I return to work next week for one day, I just have to arrange which day.  In July I will expand the time at work.  There will be less support stuff going on at the hospital which will make it easier to return in a way. I won't feel like I am missing as much good stuff.  

I attended a great workshop on self massage on Thursday.  If you get a soft pink bounce ball, like a spalding I think, maybe softer.  You put it in a sock and throw the ball in the sock over your shoulder holding the other end.  Position the ball this way on the fleshy area between you spine and shoulder blade and stand with you back against a wall, your heel maybe a foot from the wall and lean back sort of rolling the ball up and down or left and right.  It gives a suprisingly good massage. You keep repositioning the ball all the way down the back and around the buttocks.  It is Ok if it hurts a little but still feels good. If it just hurts you are pushing to hard.  You can also roll you foot on the ball against the floor and roll a rolling pin on your legs (unless you have varicose veins or bloot clots and if you have edema you should only roll up not down.)  

It is finally sunny after a week of rain so I want to go outside and enjoy it now.  I may got to a river festival but I have spent way too much time standing the last two day and should really rest my legs and back.  I felt that siatica type pain coming back yesterday.   I hope the rest of you are feeling good and getting situated in your new normal.

P.S. My hair is definately growing back. It is about an inch long on the sides and a 1/4-1/2 inch on top, but still rather sparce.  It is salt and pepper rather than the dark brown I think I had before I colored it.  But I have a sore bump on the top of my head which the Onc said appeared to be a cyst on which no hair is growing. I need to see a dermatolgist or someone about that.  I have much more energy then I did before but my muscles fatique very quickly.  My toes and the bottoms of me feet are still numb.  My nail beds are no longer sore (which I noticed when I filed them the other day) but the nails themselves are spitting worse then they were.  I think the nail that developed during chemo has reached the tips now.  Those are my main remaining symtoms.  That and some intense emotions as expressed earlier in this post.  

I'm so happy you had a great vacation Holtbolt!!!!!  It's exactly what you needed!  The beach IS great therapy.  Go ahead and color your hair!  I love mine.  I was at a party last night..a girl I didn't know told me she LOVED my hair and wished she had the guts to go this short!!!  It was fantastic!!!  Mostly because she reminded me of myself at her age...she was 26....perky brunette.....it was like looking at myself in the mirror 20 years ago.  It was a huge ego booster!  The lashes come back so fast too!  Last week mine were so short they were sticking straight out and none on the bottom.....today I am wearing marcara top and bottom and they look like the old me!!

I am amazed at how fast things are getting back to normal!!!  

Renrel: your posting broke my heart.  Different circumstances, and I know the cancer makes it worse, but do know what it is like to want that next one and realize that the miracle period is over.  I'd hug you and cry with you if I could be there.

Bev, congratus to you.  re: the hair.   you really are early days yet.  I noticed nothing for weeks, I was seriously worried about being one of those that it never comes back in.  It is now almost 4 months from last chemo, (but only a little over 3.5 months out of the ICU so I'm not really sure where the count should come from) and it is about 6 mm in length, but very thick.  Hang in there, it will happen, just not nearly as fast as we want it to.  I seems to grow in spurts.  Nothing for days, then grow a bit, then nothing.  I can tell when it is going to go through a growth spurt, my head itches like crazy.

Thanks, kmmd---my scalp has been very itching the past two days....I thought it was the South Central Texas heat but maybe I'm getting ready to sprout!

Hi Renrel.  It's good to hear from you.  I have been really sad too that I will not have children.  I will be 46 when I am done taking Tamoxifen.  It is quite possible that I have already gone through menopause with chemo.  I'll know in a few months depending on whether or not I have periods.  Regardless, if I test positive for BRCA1 or 2, I think I'll have my ovaries out.  Like you, I knew I'd be facing the end of my fertile years relatively soon, but it's sooner than I'd thought.  I vascillate on this issue.  I'd always hoped I'd have children young but the circumstances were never right, so I held off.  Now that I am older and just barely settled, I just feel it's the wrong time of life for me to be starting a family.  Still, it is hard to let go with such finality.      

BevR - I finished chemo 3 weeks ago.  My hair also seems to grow in spurts.  It's not quite 1/2 an inch long but my bald scalp is almost all covered.  I started getting lashes right away but there are no brows.

Holtbolt - I'm so happy for you that you had a nice, relaxing vacation!  Congratulations on your good attitude and taking advantage of the opportunity to have a good time.

BerkelyKim - have a wonderful time in San Diego!  Congrats on your son's graduation!

I am so happy to have more energy all the time.  I know it will take time before I even know what my new normal is.  My hands fall alseep whenever my arms are not hanging down.  I wake up in the middle of the night with numb hands.  They are numb now from typing.  It's still so early; that should improve over time.

I am trying to re-establish old routines and did a lot of housework yesterday.  By the end of the day I had serious shortness of breath that continued into this morning, and chest pains that felt like my heart was beating up into my throat.  I suppose the Adriamycin could have caused permanent heart damage.  I'll have to ask my onc about it. I had better be careful not to do too much. It's hard to hold back after all that down time.  Again, it is early and I feel so well otherwise.  I hope it's not what it seems to be.

I'm just waking up.  I'm going to see what the weather is doing.  Hope all the jewels are feeling fine.