Starting Chemo April 2009

Honestly I don't want them anywhere NEAR my lymph nodes, thank you -- the scans I JUST HAD showed ALL NODES CLEAN -- both sides, both axillary and mediastinal/intermammary (the ones in the chest wall which did have mets at the time of my original diagnosis in 2009-BTW I never had detectable cancer in my axillary nodes, just the chest ones). Every scan I've had to date since I finished the chemotherapy, from immediate post-chemo to present, has had all nodes clean, even when I still had activity (albeit less than pre-chemo) in my primary tumor and the bone met. The bone met is still dead even though the original primary breast tumor is slightly acting up again. I'm pretty close to certain that if I have a mastectomy (regardless of whether I have a single or double) I'll be issuing these INSISTENT instructions:

DO NOT EVEN *THINK* TO TOUCH *ANY* OF MY LYMPH NODES!

LOL Well Helen, if your goddess of suffering is around, I am really and truly blessed. :-P 

Oh, and one thing. I think I'm backwards from everybody else when it comes to waiting for test results. For me, the waiting is the GOOD part. I don't mind waiting because so long as I'm waiting, I don't have to make decisions which amount to choosing between Bad vs. Really Bad, or Really Bad vs. I'd Rather Just Die, Please. So what I hate is GETTING the results, not waiting for them.

So Helen, since you're also in a cold climate area, are you also getting snowed on today? We're supposed to get 6-10 inches. I think there's approximately 3 inches so far, but of course it's still coming down and will KEEP coming down all day and into the evening, more likely overnight. The only good thing I'll say about it is thank goodness I DON'T HAVE TO GO OUT IN IT.

Hope you all feel as well as you can and have a good weekend...and stop worrying about me like I'm a little kid, OK?! 

Guess I better resign myself to the idea that there is no such thing as Spring in New Hampshire, any more than there is such a thing as cure at Stage IV. But didn't I already know that? 

Oh yeah...forgot to convert, sorry Helen: 6-10 inches = 16-25 cm. The 3 inches already here = 7.62 cm.

Simplesoul, did you just step out of a time machine? This is the April *2009* group! LOL! But, here's hoping you don't have too many nasty side effects, and feel as well as is possible.

The Goddess of Suffering has been hanging around me for the past 6 years. It's not that I wish her on anyone else but she has messed up my life enough I want her to go away. - far far away. I wish she would fix all the things she f~c^ed up in my life before she goes. But i think it's a different goddess who brings good things to life and Unfortunately she lost my address



I'm probably going to hand in my letter next week so I'm more than a little nervous. My career has been my life (second to my kids though) so it will be a new chapter. I don't know what it will be like.



Hope everyone has a good weekend

Lena...I'm with Helen and you on the lymph node issue. Don't let them touch them. LE is a royal pain in the A$$. Hold your ground girl! I'm just hoping and praying you are not going to have to make any decisions... 

Sorry I haven't posted in a while, we had to make an emergency trip to Seattle. My mom had a terrible bout of congestive heart failure. She was in the hospital for 1.5 weeks, was release to rehab with palliative and hospice care. We probably will head north again next weekend.

Helen...sorry you are feeling blue. My weight loss and exercise routines have been hit and miss too. I've lost a little weight, maybe five pounds, but it's been since January that I've been watching what I'm eating and exercising at least 3 days a week. I should have better results...it is frustrating.

Hope you all have a good Sunday.

Betsy

Thanks, Judy. I appreciate your kind words

ooops.....

Oh Lena - what can I possibly say?  You have had to endure all this waiting and wondering, and it would be so easy for me to say "Maybe it will turn out negative", or "Please don't say coming off the AI's would give you time to feel like a human before you die"...yes, it would be easy for me to say, and I might feel better if I said it, but I don't think I would be respectful of how you feel right now.  What I can say is that I, as well as everyone who has gotten to "know" you here, hears you, and wishes we could take it away.  Since we can't, I will only tell you that I am here for whatever I can do.

Geri

Lena, we are here for you. I'm still hoping you will get B9 results



I plan on handing in my resignation/retirement letter tomorrow. Kinda scary. I started teaching in 1970. Took some time for mat leaves, several years part time. Teacher, department head, vice-principal, principal, superintendent.....2 medical leaves for BC within 5 years. Scary to think that that will be gone at the end of August. But I'm tired and I don't think I can manage for another year.

Hi everyone...soo..Helen..you are going to retire...good for you...you will probably love it once you get used to it..I know NO ONE who has retired that hates it...most of them wish they would have done it sooner...I think that maybe it is hard to let go of what has basically been your entire life.you can come and visit me if you want...if anyone is interested in coming to Ohio for my daughter's wedding you can come...there will be lots of wine and dancing and food...please note that I listed the  wine and dancing first..

Food.

Food.

Food.

Y'know now that I have finally, officially lost ALL 30 of the 30 pounds I set out to lose, I'm still probably going to end up with a body I have to hide even more than I did while I was fat. Why did I f***ing bother?

No, I'm not craving a pig-out of junk food or even a plate piled with "too much" healthy stuff, just thinking if you can call it that. No news, still waiting for someone to call to tell me the biopsy schedule, just venting.

:::::sigh::::: 

Lena...ya know..I don't think our bodies will ever be the same after all that chemo.  I went through menopause also (did you?)..menopause actually seems to make your body go to hell..you are producing no or very little estrogen so your hair/skin etc. goes to crap..then the ol' muffin tops apppear..I'm trying to lose weight/excercise...but it is alot harder now to lose weight than b-4...No..I don't expect the body of a 20 year old..but I sure wouldn't mind that flat stomach again...I'm also seeing some wrinkles on my hands...face is still ok..but my hands..I hate that they look old...

Judy..plans are going well..and sincerely the invitation is open to all of you..I would love to see you..wouldn't that be fun???  Some one has to disco with me..ha ha

Yes Titan, chemo did push me over the menopause cliff. I was in PERImenopause when diagnosed, and chemo pushed me all the rest of the way.

But I don't mean dry skin, dry hair, wrinkles or muffin top when I talk about thinking I'll end up hiding my body even though I lost all the weight I had planned to lose. What I mean is wanting to hide my body from my Pack Rat if I have a BMX. 

Lena - I had a mastectomy for the cancer breast (right) in March 2009, then electively had a mastectomy on the left a year later so that I did not have to think about another cancer hiding in the breast tissue like the first one did (multiple negative tests before I said just go in and take whatever I feel out, and guess what...you know).  I, like you, have a manfriend (I can't adjust to the word"boyfriend" at my age , and I had more issues thinking that he had issues than what he really had when we finally talked about it.  I decided that I was making more of a fuss about being boobless than he was, relaxed about it, and everything was fine in the intamacy department.  I had saline implants done because I didn't want to be worrying about what clothes I could wear and just not feeling like I could get dressed and go - I don't regret the discomfort I had for a week or two, I just think it made my life, for me, easier.  The reconstruction is a personal decision, but Pack Rat and you should talk about the BMX if it comes to that - let's hope you don't have to have that discussion.

Geri

OK, here it comes:

1. Wednesday 4/13 oncologist appointment and the last day I take my Coumadin until after the biopsies. I'm told (by the lady who called to set up the scheduling this morning) that my oncologist will also be prescribing me an anxiolytic medication to take before the procedure.

2. Monday 4/18 PT/INR blood test to see how it is post Coumadin (vampire will drink from the port then flush it since I still have it and it'll be time for a flush anyway).

3. Tuesday 4/19: 8:30 AM dual core needle biopsies. Live, in stereo.  :-P 

This all works around the OTHER upcoming medical appointments -- with the PCP, psychotherapist and psychiatrist, that is. 

This isn't the first time I've thought about mastectomy -- bilateral yes, but not in general. Remember how I got railroaded into chemo because the oncologist who diagnosed me said I was inoperable because my tumor was too big and into the chest wall nodes but also said chemo could shrink it to operable size? (but AFTER I finished the chemo, he tells me Stage IV patients only have mastectomies if their tumors are breaking out of the skin of their breasts -- and mine never did that?) Well, while I was still under the misapprehension that I was having chemo for the sole purpose of making it POSSIBLE for me to have a mastectomy/get rid of the tumor before it got bigger and messier, I both did research AND talked it over with my Pack Rat (including showing him bookmarks I made of website pictures with and without recon). 

At first when I started the research, I was extremely impressed with the recons I saw pictures of (shocked at how nice it looked, to be honest), plus, since IMO I had too much belly fat, was thinking of the snide opinion I'd had about my body for the past 10-15 years anyway, "I wish I could take this gut and move it into my chest, then I could have nice big breasts instead of this awful fat gut!" LOL -- well geez, now I actually have an excuse to do just that!  (I am not now and never was fat anyplace ELSE, ONLY and ALWAYS just in the belly!) Buuuuutttttt.....there was the OTHER part of my research since I had also just joined BCO, so in addition to looking for pictures and general medical information about mastectomy and reconstruction, I added reading in the surgery and recon areas of BCO to at least get something of an idea what it would be like in terms of risks, pain and recovery time. THAT was when I decided I did NOT want to do recon. I'm a total sissy when it comes to pain and I'm already disabled, and on top of that, this procedure is 100% cosmetic and 0% medically necessary. When I showed all the info to my Pack Rat, saying I liked the look of recon but was kind of afraid to do it, he immediately said "Go flat on that side! It's not worth risking any more surgery than what a doctor says is necessary." Besides, I'd still have the OTHER breast (more on that to come). Also, if I wanted my chest to look "even" in clothes when I went out, I could stuff a sock in my right bra cup: no pain, no money spent either. So that was the original conclusion around the time of my diagnosis in 2009.

After THAT oncologist (the original one before I moved) told me no mastectomy, I was actually kind of relieved even though I was pissed off thinking I'd ruined my life with the chemotherapy for nothing. My Pack Rat was shocked when I told him the oncologist said surgery wasn't standard of care for Stage IV patients, all along he has thought I should have a mastectomy, saying "the fewer tumor cells you have, the fewer new metastases you can get." I actually thought, even though I was pissed about not being dealt with honestly from the beginning, that since I already had mets anyway, it wouldn't make any difference (in THIS respect I believed my oncologist, I just wish he would have told me SOONER), so for me it was off the table and I thought "just as well, I've had my fill of medical procedures anyway." Since my right breast was mangled and shrunken, I simply went ahead with my "invention" of the Bra Sock to even out the look of my chest when I was going out (in warmer weather: in winter I wear so many layers and big sweaters or flannel shirts my chest was totally buried I didn't need a bra at all!). And then I actually sprung $19.95 for a breast pad to stuff in there, looks better and is easier to put in than the Bra Sock.

My new oncologist had been thinking differently though -- more like my Pack Rat actually. She believed if I had no other evidence of disease, taking that breast off would put me in full remission. And, my last 3 scans were (June 2010) Stable; (Oct/Nov 2010) Stable, and (January 2011) Regression. So she said at the very least she wanted to re-biopsy the original breast tumor spring 2011, after another scan around March or so...which is the one I recently had, original tumor active again. ummm anyhoo....rambling again am sick of writing this post  :::::sigh::::

My Pack Rat is supportive, yeah, and while he wouldn't stop me if I WANTED to go through the extra procedures for recon, he says he has no problem with all flat (yeah we did talk about it recently, a couple days or so after he found the New Lump in my other breast) he was saying a BMX would be the sensible thing for me to do). Thing is, yes, Geri, yes, Judy, *I* am the one with the vanity problem -- but in addition to the unfeminine appearance of no breasts, there's MORE -- the sexual sensitivity of my breasts -- which may "only" be 34C in size (or now, the left one is still C but the right looks like a B or so) but function exquisitely when it came to getting me turned on -- this has always been a very big part of our bedtime enjoyment. The thing is he has been repeatedly telling me for 8+ years now how MY being turned on is what turns HIM on. Since reconstructed breasts look nice but have no sexual feeling, and since I'll lose ALL sexual feeling in my chest ANYWAY if I have the BMX, in addition to the looks issue (which I realize is probably all my own personal vanity hangup) is that if I can't get turned on, he won't either, so I'll be sexually useless. Me being sexually useless means I will lose the last and only pleasure I get out of life anymore and on top of that, won't give HIM any pleasure either (except maybe as "just a friend" since we'll probably always be INTELLECTUALLY compatible) and why the hell should HE have to deal with a lousy or nonexistent sex life? If all I felt about him was "just friends" I wouldn't care and would tell him it would OK with me if he found a hot new girlfriend, but because I love him "that way" too, that would kill me. 

Gotta go. It takes too long to cry and post at the same time. 

Lena, totally understand what you say about the importance of breasts to enhance sex. Actually, like you my breasts were what got my motor running and made the sparks fly. I am devastated to have lost that part of my life........forever. When I had BC #1 and found out I was BRCA2+, my doctors, my friends and my family wanted me to do bmx. I refused because I knew it would kill any sex life that I hoped to have. So did lumpectomy, had guy in my life and amazing sex. BC #2 comes along and I'm told there really is no choice any more. I hate what has happened to me physically, guy said he would be supportive and told me I was doing the right thing but he disappeared (truth is that he probably would have left at some point anyway). Being BRCA+ is terrible. Judy, I'm sure you know what I mean. Sorry for the rant. Most of the time I try not to think about it but when I do, I still get upset