Starting chemo January 2009?

Renrel: I'm exhausted just reading about your weekend.  I get the waves of sadness too.  I'm not depressed, am happy good portions of the day, but the waves hit.  I'm assuming they'll get further and further apart with time.  Told DH yesterday I'm having fun with the new C cup me from the recon, but would trade it all in a heartbeat to have my old breasts back.  Renrel hope you get some rest tomorrow.  To the rest of you hope you have a loving and wonderful day.

Lisa - congratulations on your bone density test!  It's great news.  I'm glad for your kids that camp was a success and a good time.       

Kathy - that's terrible to have had a theft and I am so sorry about the BRCA results.  It is a lot to process.  I should have results in another week or so and I'm nervous about it. 

Kim - I hope you were able to relax some this weekend.  It sounds like you have a lot on your mind.  Once you get started on your new job, you'll be fine.  I do somehow believe that we are not dealt more than we can handle.      

Holtbolt - I'm sorry to hear that the concert was canceled.  That is a dissappointment.  I hope they can reschedule soon.      

ddlatt - congratulations on finishing rads and on buying your tickets!  What a wonderful way to celebrate feeling well again!  

Jess- Wow, you're getting your port out!  That's good news.  Yeah!

Phyllis - Hope you enjoyed your cookout and I am happy to hear you decided about your surgery.

kmmd - the week wipes me out also.  I never imagined I'd be so weak 6 weeks after finishing but I know it will pass eventually.

Renrel - glad to see you posting.  I agree, you should write a book.  Why not?  It would be valuable to other survivors and to people who are first faced with all of this.  

I still think the tamoxifen is making me a little anxious.  I hope that levels off over time.  I am worrying and feeling like I have to plan everything, which never works for me.  I need to take it one day at a time.  The best laid plans.....

I must admit, I am bored.  I really don't have a whole lot of energy but I need to do something about that, for my health.  I am sure that for some of us regaining our energy just takes time.  I'm glad to say my hair is growing.  It is finally starting to look like a short haircut.  I still wear my wig but probably won't feel the need to for very much longer.  I've accomplished nothing this weekend but I'm going to try to do a little bit now.

It's nice to see you are all still checking in. 

I hope everyone had a great Fourth!      

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I fell like a GHOST come back to haunt all of you!!!!! It is wrong to say it is exciting to still see some of the same names.................I guess that could be bad and good. I always felt like you were all my family thou all of this tahnk you again for all of it.

          This is sweet pam if you have not fiqured it out!!!!  I am on Arimidex, no side effects that I know of.

         And rememeber me with no side effects at all?? After my last chemo my lashes an brows started to disappear slowly.....................and now I am loseing both my big toes toe very stanrge??

        nails............ 

                     The last time I wrote you were all on 68 now you are on 91!!!!! I just got my 3 month check up and the blood work was great. Now I go every 6 months.

                    I did not make a big thing of this before but I had chemo BEFORE surgery, when they removed my breast they found NO cancer??? 3 nodes out of 24..but NO cancer in my breast, I did not make a big deal of it at the time because I was trying to recover and just get on with my life, but now I WONDER  did they need to remove it at all or could they have just done the nodes???

        Any one else ever hear of this?? I just ordered my surgeons notes and hope to get them soon, and again it won't change anything but it does bother me?? My surgeon said that in 2009 thats what they do.

             But if a person has a cancer growth in their arm they try to shruck it and they do NOT remove the arm???

                 Anyhow just talking I guess...Renal, lisa, lisa, holtbolt and I know I missed a ton others.....my thoughts are with all of you!!

                my hair is back and VERY gray...still to chicken to go without the wig may try to be brave tomorrow.......................  Funny it is the last reminder of the cancer people can see!! Love to all Pammie

Hi everyone.  I was just reading over the early posts on this board.  Wow, what a lot we have been through together!  I was so very scared, just a mess, at the beginning.  I really have to thank each of you for all the support you have given through this.  This truly has been my life-line.  I appreciate you all so much!  Now we continue.  Of course, it's still hard and we face new hurdles but we know each other now.  I think, "We have been through chemotherapy" and I can't believe it.  We are amazing!!   

Pam--great to hear from you! I hope you can clear up your questions about the mastectomy and hope you find some peace with the answer. Very confusing!

Holtbolt--I'm taking Arimidex and in the morning before I get out of bed my toes and fingers feel stifff, sort of swollen. I though maybe it was leftover se from the Taxol, but maybe not. They don't ache so much as they feel bloated. I am creaking more in more parts of my body--especially my neck, and have some hip pain off and on.

A big sleepover sounds great! I already imagine that you ladies are in my living room, sipping wine, laughing, crying. Well, better off to bed. Have radiation early. 6 more days of regular treatment then 5 boosts. Ready to be done!

Good morning! I'm glad everyone had a great weekend. Had a cookout yesterday with my family and a few friends. Had a great time. Drank some beers and played bocce ball. My legs are still bothering me. I just don't know when the aching will go away. My hair is growing a bit. Its fuzzy but I can tell i'm getting some. Now if my lashes and brows would start growing and my teary eyes stop tearing and my fingers and toes stop numbing. But I am feeling much better. I'm sleeping better and have a bit of energy.

I'm happy for all of you that are almost finished with rads. I wish I was that far along. I won't start till Aug. Everyone has been such a great comfort and supporting each other. It would be so fun if all of us could get together in the near future.

ddlatt- happy for you going to Paris. You deserve it. We all deserve to do something special when we're done with all this.

A get together sounds good to me, but hard to think that far in advance at the moment. I am still trying to get something pulled together for a family vacation and a couples get away before the end of the summer. 

For those of you who commented that you agree I should write a book, if you really meant it and were not just being nice, could you PM me and tell me why what I have to say is any more meaningful then what anybody else having gone through this would say?  I am trying to figure out if there is something I myself have to offer that is special in some way and I need some persecpective from outside my head.  If I can understand why a certain segment of the populations is drawn to my kind of writing/view point/opinion/whatever I might be able to start formulating a formate or germ of an idea to form a book around.  All I know how to do is post my stream of consciencious posts here and in my blog and a book needs more structure than that.

I realize in the past few days that my eye lashes are definately thinned out.  I was aware of one definate hole in the row of one eye but was not sure anything else was going.  Then I noticed a hole on the other side, and that there are no lashes at the far side of that other eye.  I am hoping they are just going to thin and not fall out completely, after all I never got a skin head, just a fuzz head, but we will see.  If it happens it will also pass, as everything does, the good and the bad, so no need to get to bent out of sorts over it.  

I got DS into school just before noon today, after we both slept late and had a lazy morning.  I have 4 hours to myself before I have to pick him up.  I want to sleep. I want to get something done.  I have a dozen things I want to get done. I need to pick one goal, even if it it to just sleep, and do it.  I am going to feel really down if I spend 4 hours not deciding what to do and then can't do anything.

I would LOVE for us all to meet!  It is hard for everyone to coordinate but if we try for a year from now, that would probably be managable.  Let's do it!

I agree.  I definately think the idea of finding a house to rent and then planning a get together is a wonderful idea.  Let's keep the conversation going.

Sweeeeepam---So wonderful to hear from you.  I've often wondered how you were.  I still go back and forth with the issue of whether or not to take off the other "healthy" breast.  In fact I go back to the breast surgeon tomorrow to have her do an exam because I am worried about some changes I've felt in my monthly exam......

Yes, year of the HAt and all I have my PORT OUT!!!!  Then of course , I had little bursts of anxiety upsets as I wait to see the BS.....But dang it felt /feels good to get that sucker out! 

And-ching,ching I am puttting aside my  January Jewels or bust ( no pun intended!!) money for our grand get together.  huh.....January Jewels Grand Get Together----or JJGGT!!!!  Okay, so who can think of a better title??????  

You all are great.  Thank you for always responding and helping me through this. 

Congratulations ddlatt!!!   Enjoy your trip to Texas. And then your trip to Paris!  Time to get back to life!!!

Jess: Ports out !!!  That was one of my happiest days as well.  It's another milestone to putting it all behind.

Patti:  WOW you are about 2 hours away from me.  Hibbing, the home of Bob Dylan!  Played in a tennis tournament there in high school.. that was a long time ago.  Hope you are having a great vacation.. it is a beautiful area.

HoltBolt: I'm on arimidex and have the same foot pain phenomena.   They hurt and are stiff when I first get up, then onece I;m up and around, they don't bother me.   Hey, there was a special on Aerosmith on TV last night .. thought about Max and sure hope he gets to meet those guys.

renrel: you have a very thoughtful, insightful approach to life.  You embrace mind-body healing.  And you have the weirdest brownie recipe I've ever heard about (with red bean flour!)  All the making of an intesting book.   Maybe ddlatt can do the cover.  

I am holding up ...thanks for support about my genetic testing.   I got the printed report in the mail on Sat.  An interesting, albeit confusing, read..... I am not BRCA2 positive - I have a BRCA2 variant mutation which is "presumed deleterious" - they (Myriad labs) don't know if this variant increases risk of a new bc or ovarian cancer as it has not been researched, but they suggest  that I treat this result as is I were BRCA2+ if I come from a high risk family....which I was told I don't.  Now I don't know what to think...... 

Then at 7:41 this morning I get an email from my Cancer Center nurse telling me that my med onc wants to discuss the results with me - wow -- the results are hot of the press and he's already calling ---- amazing coordination of care...and very reassurring.   I already had an appt scheduled on Thursday as a part of the clinical trial so I will learn more then.  I am sure he will be researching this result and have a solid reccomendation for me.

Of course, I've spent a little internet time on this test result -- there is a government website that lists all the BRCA variants - there are hundreds of variants.  They list the number of each reported by various labs -- only two people identical to mine -- always knew I was a rare bird!  Wish i knew what happened to them....   Will keep on -- one day at a time--  and hope for the best.  

Like "doable" and "cumulative", I have added "presumed deleterious" to my list of annoying words..LOL.

I think a sleep over would be great....I'm really good at pictionary.. well I used to be before chemo/estrogen deprivation brain.

Keep on keepin on Jewels.....  

Kathy, how funny....the thought of a bunch of chemo brains playing Pictionary.  When we do meet let's pencil in a siesta.   

You are over my head here with the BRCA information.  That research will keep you out of trouble for a while.  I can't wait to get my results.      

Renrel: I'll think on it more, but my knee jerk response is how calm and positive even on your down days you were.  You smiled even on the days you cried. Maybe you don't think its true, but its how your posts always came across to me. Guess I'm not explaining it right. I just thought it was an admirable trait. Getting through this with your spirits and dignity intact.  If you could help others do it too, the way you helped us, that would be a gift to give.

Ddlatt--Congrats on finishing radiation!! I bet you are SO happy and relieved, and the trip to Paris sounds great!

Jess--what a relief!!! You must have been so worried, but I'm glad your bs is set up to do all those tests. I've got to find someone like that.

 I'm tired. Got up at 4 am to get ds to airport for first Europe trip. Unfortunately the agency booked his girlfriend on a different flight leaving tonight. And he got diverted from jfk and missed connection to zurich. Drama.

I'm signing up for the bisphosphonates trial because they told me my insurance doesn't cover Zometa since it's not approved for non-mets use. I'm going to push my onc more. I'm really ready to be myself again. Radiation was ok til this week and now my skin has an open spot (healing thought) and my arm is so stiff. Gonna sign off before I whine too much.

Jess, yahoo.  It's awful isn't it when the fear smacks us in the face so soon, just when we're trying to convince ourself that things will be ok again

Kim, yikes on the airline connections, I always get so uptight flying worrying about things like that

Renrel:  I'm still struggling to work and at a portion of my previous pace and exhausted while doing it too.  I'm 3 months out.  My Onc tells me its the chemo, and I had a long gap between chemo and tamoxifen so I think she's probably right.  She said I'll feel a little better in 4 months, but to expect for most people a year before the fatigue is really gone and you're feeling more normal.  I don't know about you but I have to be careful with work becuase the chemobrain gets bad when I'm tired.  I do more routine things at the end of the day or week when I'm more tired.  I'm with you, my yoga keeps me going.