Starting Chemo April 2009

Hi Amy. Glad to hear that things are moving forward. I understand what you mean about being the patient again. The bone density is really nothing. No prep. Just lie on the table for about 15 minutes while the machine does its thing.

Please let us know how it goes Mon Amy! Boy do I know how much new Dr appts stink. I am still in the middle of it and what I affectionately refer to as my personal "Great Race for New Boobs" is still in full swing. Before my bone scan a few weeks ago (I was on a clinical trial with Zometa so at the end of the trial you get the scan). I worried that I put myself thru all this surgery and may have missed time I could have enjoyed and not constantly recovering and running to Dr appts. I know I am cancer free courtesy of the CT with contrast to get my Aug SGAP and the bone scan so I am pretty confident I will have a good 5-10 years minimum. Hopefully many more ; ). I have had 3 surgeries already this year with a Stage 2 4th surgery still to come Dec 14 for my SGAP.



This is a bit long, but I think my New Orleans (NOLA) SGAP DIEP group may think I am crazy because we had planned to go to Cancun or Cabo for a week at Christmas. I am going to ask your opinions. Stage 2 is mostly cleaning up from Stage 1 a lot of lipo and nipple reconstruction. Stage 1 was the big flap surgery and was 12 hours. The next surgery is only 4-6 hrs



My surgery is Dec 14 and we wanted to leave Dec 22. I am on the West coast so the trip to Cabo 8 days post op is shorter

than the trip from NOLA back home, does that change anything? We were planning on going for

Christmas, we have no family out

here, we would be staying in a very

nice resort I will probably have to

do less there than at home for

Christmas and I have a 13 and 9

year old sons and strapping

husband so I will not be lifting any

bags. I hate to disappoint the

kids... They did not get the summer

trip I promised them because I had

to have emergency surgery to get

the infected implant out, we could not get the infection under control.



I know it is crazy to think about, but

on the other hand I am certain if I am home I will be cooking, loading the dishwasher, decorating, etc etc whereas if we go, no cooking, no clean up, no laundry...does that change things?



Any and all opinions positive and negative appreciated!



Lesley

Lesley - You know how you respond to surgery by this point. How do you anticipate feeling 2 weeks after the procedure? I dont think it sounds crazy BUT i dont think you would be at the top of your game by then either. But then, if your plan is to lie around and be waited on, maybe it WOULD  be better there than at home. And the personal RN is a definite bonus in this situation. (Your comments about him and the chemo marathon runners cracked me up.)

I had my pre surg EKG on Mon and my blood draw today.  Compared to a 4-6 hour surgery, this is SO MINOR. I was a bit disappointed to learn that it will be a TWO WEEK wait for the results of the biopsy of the tissues from the D&C. But I am planning for GOOD NEWS, which is what the GYN expects also. Trying to keep my chin up.

Watched Monday night football last week and said "By next week's Monday night football, we will be sitting here watching the game with the procedure behind me."  And now tomorrow is THURS already.  This will be over with soon.

Love to all

Amy 

Lesley, hard to say what to do. It really depends on how well you heal. It might be a good way to recover. Even if you stay home, you have to stop doing all that housework. I think Amy is right - ask your doctor.

Amy just a few more days until this is over. Don't think we ever get used to the waiting but so happy to hear that doc is feeling positive. Remember we will all be with you (virtually) during that surgery.

Keeping fingers crossed for a quick recovery for you both. 

Hang in there Amy!  You will get through this...we all now the anxiety is worse than anything!

So.."they" are finding out that triple negative BC can be similar to ovarian cancer which totally freaks me out..so now..on my next visit to the onc I need to talk about taking out my ovaries...or at least a vaginal ultrasound to start...ugh...I'm with you all on another medical procedure...hate to think of it.

I have a cracked tooth way in the back of my mouth and it was to be pulled out a week ago but I cancelled the appointment...you can't see it when I smile and it doesn't bother me so I decided to not put myself through it...maybe some day..but not today..or tomorrow...

Hi all,

I'm back from a great vacation. My edema did fairly well, had no problems flying to Boston but coming home last night I swelled all up. But at least I'm home and we had a wonderful time.

I skimmed over the posts I missed. Emailed Amy directly about my EC process. For me it was just a GYN visit, transvag, very painful biopsy, referral to GYN Onc., surgery. I have my first annual appointment next Monday. Can't believe it's almost been a year since my surgery. The odds are really against EC for Amy, only a .02% chance and I am already one in the stats on this board. So I'm feeling really good for her. Not that she has to go through this scare but that the odds are really good for her.

I too tried to look up Lena. I went back through her posts to see if I could find some detail that would lead me to her. But no such luck. I think its interesting that there were a number of us that tried to become Sherlock Holmes and find Lena.

I am ubber sad today. My neighbor that lives next door wasn't feeling well before I left. She had a very bad cough that had been going on for months. She had some tests the day before I left. We came home yesterday to news of stage IV pancreatic cancer, mets to the lungs, spine and nodes. She is already on hospice no chemo as she is too weak. She is 53, so young. It's so shocking. It has brought back all the memories of my late DH, who died of PC when he was 46. CANCER SUCKS!!!

I am so sad. I have cried a lot today. My dh said, I can't believe how many people have died in our lives since I met you. I said...it's not me...we are just getting old. 

On the old note...Happy Belated Birthdays ladies. I'm happy you are another year older, that means you are alive! My wish for you "Live Long and Prosper". "VV_VV" -the Vulcan sign.

Betsy sorry to hear of your neighbor.... So very sad all this cancer. No matter "what" they say, I think it is on the rise.



Thanks for all the comments on my post I really appreciate it!



Have a terrific weekend everyone.



A special shout out to Amy. Wishing you peace and relaxation. Hoping you can keep your mind off the upcoming procedure as much as possible!



Hugs

Lesley

Hi to all,

Betsy, I join those who are so glad you enjoyed your vacation...it's about time you got to have a positive experience...well deserved. However, it was crappy to then return from a good time to hear the news of your neighbor, and I'm sure, as Amy said, it brought up your emotions of having experienced a similar circumstance with your late husband ( I must have missed that background on you, how traumatic to have gone through his passing and then deal with your own diagnosis - we all know what a strong woman you are, and I'm sure that tested your strength even more than for most of us).



Judy, I am always amazed that you are surprised at how tired you are! If I did a quarter of what you do each week, I would be tired too! Maybe you are just expecting too much from yourself?



Titan, Leslie & Helen...how are you all?



Now, for my wishes for Amy - I wish you a restful and peaceful Sunday, a good night's sleep to prepare for Monday, a quick, uncomplicated procedure that eliminates all those "icky" symptoms you have been having, a bucketload of patience while waiting for the results, and finally, the results that will put your mind at ease and allow you to move on without the proverbial dark. Loud looming overhead! As Judy said, we have your hand ( and your back) as you get through this. Luckily, we seem to take turns needing the groups support, but I have no doubt that if more than one was in need, we would " grow" enough extra hands to clasp whoever was in wanting.



As for me, the new medication for my heart seems to be helping - not completely, but enough that I notice. I had my 6 month onc follow-up Thursday, and they asked if I would mind seeing a new partner. I said that was fine, because other than my heart problems, which are being followed by the cardiologist, I have no new symptoms. New onc was very nice, he did get a bit of a push-back from me when he said "another 2 1/2 years and you'll be in the clear. I nearly took his head off, my mother was 7 years out when they found her mets, and we all know stories of our own and others from here. I told him that I never will use the term cured, as I consider it bad karma, and that I hate the color pink and the month of October, because I see so many things that use the term "survivor" - it's a personal thing with me because of my mother, dead at 53 with her doctors, up until the month before she died, telling us she was cured (survived more than 5 magical years) and that her abdominal pain ( mets to the abdominal lining) was all " anxiety". So, my poor new onc got an earful. Wonder if he'll want to give me back...lol.



Everyone have a good weekend, and Amy, let us know as soon as you are able, how things go.



Geri

Amy, sending you much love and strength for tomorrow. Please let us know when you are done and allow yourself to be as "off" as you want. We are all human and cannot be expected to just keep on going regardless of what is going on around us. I ditto everything Geri wrote - we are all behind you all the way.

Geri and Helen, thank you for your concern; I know that I expect too much of myself, it is just my way. I feel that if I am doing less or not coping, then I am letting BC get the better of me. I used to have boundless energy and the capacity to multi task and now I struggle so much with my new limitations that I feel that I cannot allow them to win. Does that make any sense? I just don't want to let anyone down; My kids had such a hard time when I was sick and couldn't function, that I don't want them to see my like that again. They are already worried about after the surgery. I try to explain that I am not doing it because I am sick, but it is hard for them to differentiate. This disease touches everyone in some way or another. It is so hard...

Lesley, have you made a decision about your trip?

Geri, good that you spoke your mind to the Onc. If you hadn't you would have left there simmering which would not have been good for you. Glad the new medication is making some difference.

Betsy, how are you doing? Thinking about you.

Titan, hope all is well.

Sending everyone hugs for a great Sunday!

Judy x

Thinking of you Amy!!

Helen..question..why would you rather have TN than er+?  You know...that triple negative is the absolute worse nasty cancer that you can get (at least if you google  tn...which I don't)

I have bad teeth anyway but they seem to have gotten worse since chemo.  I have had to have my front teeth buffed and whitened since chemo....my dentist doesn't understand why this is. 

Hope you enjoyed your vacation to the east coast Betsy Duck!  We just got back from South Carolina and now back to work tomorrow..ugh..

Dear Helen and Titan,



Forgive me for perhaps bringing my own baggage into your discussion, but it resonates with me based on the above post with the discussion I had with the new oncologist, and the month of October, where I an inundated with pink survivor's t-shirts and visors.



So, I am taking the liberty of weighing in on this very sensitive subject of percentages when people speak of surviving cancer. Please know that this is only my personal view, and is not meant to influence how anyone else feels.



I cannot speak of my cancer in terms of the percentage of survival or recurrence. As an individual, if I am in the " 1%" that they speak of when they try to reassure me that I have a 99% chance of living a long, cancer- free life, nothing else matters - someone has to be that 1%, why not me! The same holds true in reverse. If my prognosis is not so good based on experience, and I have a 70% chance that my cancer can recur, I don't want to let that consume my thoughts, because why would I not be just as likely to be in the 30% that never experience the return of the cancer.



Sorry that I am rambling here, but the onc did hit a nerve, and my Mother's experience with her " 5 year survival" that caused her doctors to minimize investigating her pain has been on my mind, and reading about TN and hormone + kind of went along with that.



I only pray that we are all on the right side of the percentages! Helen, reading your post brought tears to my eyes - you continue to face such challenges and I admire your courage.



Geri

Geri, no problem. Any one of you is welcome to jump in. We share a lot among ourselves. I do my best to not think about statistics and just do my best every day. My mother died just before her 5 years. A friend had a recurrence after 8 1/2 years and died 2 years later. I agree that the 5 year mark means nothing with this disease. We have all been through a lot. I admit there are times I say "why me?" and I wish I could catch a break because there always seems to be something new. But it's the same for so many of you - we are in this together and thank goodness we have each other because i know all of you understand just the same as I feel your pain and worry for each of you. I hope we are all on the right side of the percentages. Titan, you are correct - it sucks either way. Right now let's all get behind Amy and wish her well for tomorrow. Luv you all. 

You are all so amazing! I am on the West Coast so just getting up and reading all your posts!



Cancer sure gave us all different perspectives than we had before.



I am so thinking of Amy this AM. I hope her Dr feels things look good and can provide her some peace of mind. I know nothing is certain without a pathology report, but we all know only too well how rough the waiting can be.



Geri Helen Titan Judy thanks for keeping me in the loop on all that you are thinking and feeling! You are all so wonderful in your comments.



Judy you have a beautiful heart. Geri I am so glad YOUR heart is

responding to your meeds and your comment about the Onc made me laugh out loud!



So sorry for all tour side effects Helen. I think I told you I switched from Arimidex to Femara but it has been a solid 3 years since I can remember what it feels like to get out of bed and just feel normal or perhaps NOTHING, but it never happens.... My first 50 or so steps are excruciating every morning. I was 41 at diagnosis and 44 now and I swear I feel 80. After the day progresses and I am moving it gets better but the joint/foot pain is rough. Some days I think I will fall but thankfully I don't. It is hard to forget I agree Helen. So while I "try" not to think of statistics I understand what you say Titan. My breastfriend - local woman I became friends with in "real" life I met on here, is triple negative. She was three rounds of chemo ahead of me and older than me, BUT she not only acted as a big sister she took a lot of the fear of the unknown out of it for me. We are still friends and I will be in debt to her forever.



Sorry I digress I guess what I can say from being close to someone is that while I understand the additional therapy and the comfort that may seem to provide, there are still many that die from this disease any way. I have seen vegetarians marathon runners supposed healthiest of healthy folks lose the battle while a smoker survives. I am not suggesting smoking : ). I have seen women diagnosed stage 1 er/pr + her 2 - get fast recurrence and pass and I have seen women here live with stage 4 for a decade. What I have decided is it is a crap shoot and Bo one REALLY knows. So I do know the triple neg stats and I admit I would not trade places, but the truth is my triple neg friend who is 15 years older than me definitely has had a better quality of life the last 2 years and may even out live me, at which point you might ask yourself was that extra therapy worth it? If that is how it turns out I would suggest it wasn't. You just never know so we all have to make rhe best choice we can for us. I know a fee women who stopped taking the AIs or Tamox. I did for a month and I felt GREAT dare I say normal. But being BRCA2 positive like Helen and stage 3 the Onc put some numbers on the table that were too staggering to ignore. Same deal as all this recon I put myself thru. I just hope I get 10 more years. Well ok I would like to make it to 65 to spend SOME of the 401(k) I saved hee hee but honestly I have 3 more years of Femara and then I hope I have a good 5 years of nothing medical....



I decided to go on the trip. I would not have for stage 1 with the flaps and all, but at this point I will have had flaps for 4 months they are part of me for life and I LOVE them. I don't even consider them foobs granted no ducts or lobes but not fake either....they are 100% my tissue and that is not fake : ). Stage 2 is lipp lipo lipo and nipples so worst case one of the nipples won't hold butb3 months ago I had none and no hope of ever having any due to all RAD complications.



Sorry this is long and hope I did not offend anyone. We all have lovely aftermath of cancer of varying degrees. I have gained 25 lbs I cannot seem to lose then FINALLY did last year only to have a complication and 3 more surgeries and gain it all back. I have a closet full of beautiful classic clothes that don't fit and I go between tearing it all out crying and never leaving the house to leaving it and hoping....I recently purged a lot because I work from home and just dont need as much, but some I just can't part with...



Hoping good thoughts for Amy!!!!



Hugs

Lesley

Thinking of Amy.

My neighbor died yesterday at 3:30 p.m., so sad. I am sad but thankful for my fat leg, flared breast and hurting elbow today. At least I'm breathing and I can feel them.

My 3 month visit with my gyn onc today. Lord...it's going to be embarrassing hopping on those scales. But it is what it is. Today of all days, I'm not going to beat myself up.  

Hugs to all. Betsy

Betsy big hugs SO SORRY!!! But I know what you feel. Struggles are better than the alternative.