Lesbians Supporting A Partner Who Has BC

mpetago

Hi Ladies!

Just checking in to see how you all are doing. Started a new job on Monday so haven't had a chance to touch the computer - sorry. So now the first chemos are over - for me, it just helped knowing what to expect. I was told to take my nausea pills right on schedule because by the time the nausea hits, it can take hours or days to get it under control. Strangely, I began to associate my nausea meds with feeling horrible, and had to literally choke them down after awhile. So there I was gagging and throwing up the anti-nausea pills?? Crazy.

Everyone is different, but FWIW, I found that at the beginning of A/C, I did really well with a few things: LaCreme peach yogurt (never ate it before or since, but lived on it for 2 weeks), mint ice tea and anything salty or made with cheese. Not that these things tasted normal or even very good, but just went down and stayed down pretty easy. Try not to let their stomachs get empty if at all possible - even a tiny bit of food helps, or so I found. I did the baking soda / salt rinse alot during A/C too, and I think it really helped with mouth sores / thrush. Hmmm . . . what else??

I remember that some days I'd wake up and feel almost normal and decide I was off on some errand or adventure, then I'd get there and almost not be able to get back home from exhaustion. I mean butt-dragging-on-the-ground fatigue would just hit me all at once - it was a surprise and a little scary too. Finally, the steroids you get during infusions can cause some people to crash emotionally around day 2 or 3 - Shuniece pulled me sobbing out of the shower a few times then. It passes quickly though.

And my hair started coming out about three weeks after the first A/C - so we shaved it off then. Huge relief by that time - very itchy. I had hair below my waist so I cut it shoulder-length first before chemo started. That broke my heart because it was one of Shuniece's favorite features. And I felt very unfeminine without it and when it first started growing back. Not ugly or anything, just like we went from a femme-butch to a butch-butch couple and it didn't feel right for me. Hope that's not too blunt or candid, but I sure haven't felt comfortable saying that to anyone else but her until now.

Well this was supposed to be quick so I can get to bed early - but just wanted to let you all know I was thinking about you and pass on the few tips I have for chemo. And Hi, Welcome and Thanks for posting to Rita!!

Melanie

lindamik

Hi All!
Rita, thanks for the post. Good to hear from someone that has made it through.

Melanie, Good to hear from you, was wondering where you had been. I love the butch-butch comment. I have already cut my hair off to support Kerri through this. She has not started losing hers yet but I am sure it will be soon and then the two of us can wear turbans together. Believe it or not a few of my customers have also supported her by shaving theirs as well. It will grow back.

Live, How is Kathleen doing?? And how are you. Hope she is feeling better today.

You are all in my thoughts. Better days ahead. Linda

livestrong

Hello to all,

How's everyone doing? Chemo #3 is today and I think we're starting to get the hang of things. Every Thursday is infusion day. K feels pretty good on Thursdays and Fridays (wired on steroids), Sat-Mon she feels terrible, and Tues-Thurs she gets progressively better, to the point of almost feeling normal. Then Thursday we start all over again. So far we are both doing well emotionally, though it's a challenge to stay positive during those 3 days when she feels so rotten. And wow, does 12 weeks sound like a long time!!

K's mother is here this week and that's been nice; I feel better about going to work knowing that K has company during the day. They seem to be getting along well which hasn't always been the case in the past, so that's nice to see that too. Maybe there are some silver linings in this experience for us??

It's been interesting to hear everyone's reactions about hair loss. Like others, K wanted to take some control of the situation so she cut her shoulder-length hair very short before chemo started. Now she looks like the baby-dy** that I remember meeting 11 years ago, so it brings up pleasant memories for me. She is not expecting the hair loss to be too big a deal, partly because she had a shaved head for a while in her 20's. I hope she's right and I expect that we'll probably find out within the next week or so.

Mel, did you have trouble sleeping during chemo? Linda, how is Kerri sleeping? K is having a terrible time sleeping, even after the steroids wear off. She comes to bed very late and then tosses and turns, waking me up too. The onc wanted her to try Benadryl first, but that did nothing, so she's getting a script for Ambien today. Hope it helps.

I've gotta run, but wanted to post a least a short update. Hope everyone is doing well.

lv2cmp

Hello everyone, I hope you don't mind me barging in on your board. I have never noticed this before and it has been a while since I scrolled down to the family,partner section.

I am a lesbian and also a breast cancer survivor. I was diagnosed in August last year and underwent a lumpectomy and SNB. Clean margins were not possible and the SNB was positive. Surgeon suggested immediate chemo and then surgery later since it had made it into my SN. I started chemo on Oct. 1 (breast cancer awareness month) and ended on January 24th. I did dose dense Epirubicin and Cytoxin and dose dense Taxotere. I had 4 of each making the total of 8 fun filled chemo treatments. All in all I can say it was not as bad as I anticipated but definetly not something I want to do again. I was able to work throughout it all which helped me mentally by only taking off for the day of chemo. I also had neulasta shots to keep the white blood count up. Kytril was given to me for nausea and not once did I experience any of that. Thank goodness for baked potatos though because they were my comfort food. Basically anything bland.

I chose to have bi-lateral mastectomy after chemo and it was my personal decision. I could not have immediate reconstruction due to the fact of not knowing if I was going to need radiation depending on how many positive lymph nodes I had. Luckily all was clear on those and it was only my SN that was positive. I have reconstruction planned for October but really not looking forward to another surgery when I am just now beginning to feel like me again. I know I want to have it done but recovery sucks and no other way to put it. I hate not being able to do anything that I might want to do.

I am 37 years old,,,36 at time of diagnosis and been with my partner for 6 years this October.

Thanks for starting this thread as you are correct in saying Lesbians have issues to deal with regarding a breast cancer diagnosis just like a hetero couple has situations that we would not have to deal with.

Once again I hope you dont mind me barging in.

alib

Please can i join? I'm a woman who loves another woman very much but life is very sad at the moment because Steph had cancer.
Ali.x

kimmytoo

I was talking to my friend of mine the other day (she's a lesbian) and she was excited about finding a group that was for lesbians with breast cancer (her mom died of it when she was young and she is very worried about getting it)

I don't know where you guys are located - but this group is in DC -- possibly they still may be able to provide some help to you ladies??? Just thought I'd share...

http://www.mautnerproject.org

lindamik

Hi all, Just a quick update. Chemo #2 is this Friday, and we pray it is a smooth as this first one. Kerri is doing really well. Very little nausea and just a little fatigue. The hair loss came quicker than we expected, yesterday it just started falling out in clumps. I cut it real short for her and we have a couple turbans, she was upset at first but she seems okay with it.

Lv2camp, Thanks so much for posting. Good to hear from someone that has made it through. I will remember the baked potatoes for Kerri. Reconstruction was not even a consideration for her, she was just not healthy enough and the surgeon would not even discuss it. That's okay though we can live with it, or I guess without it. Congrats on your upcoming 6th anniversary. Kerri and I have 22 years this past June.

Ali, You are always welcome here. Tell us how Steph is doing.

Kimmytoo, Thanks for the link. Tell your friend she does not need to worry, just make sure she gets regular checkups.

Live it was good to hear from you. Kerri is not having a problem sleeping although for some reason she is really urinating a lot throughout the night, and I mean a lot!! Don't know what to attribute it to. We had a scare this past week. We had labs done on Monday and on Thurs. the onc called and said her platelets were way too low, possible transfusion and adjustment of treatment if they got any lower. Took her right back in and had another draw that day. Low and behold, perfectly normal, it was a lab error. In the mean time, it did nothing for my nerves. Am learning to take one second at a time here so I don't have a collapse myself. I pray the next 12 weeks fly by for you, it sounds like a horrible roller coaster ride. I have heard that a lot of people have difficulty sleeping, hope the Ambien works. Good to hear that K's Mom is there, sometimes it takes a kick in the head like this to bring people together. Maybe that will be the case.

Good to see our group growing. Look forward to hearing form everyone. Take Care Linda

alib

Thanks for letting me in. Been posting on another website but they take 24 hours before they reach the forum, sometimes when i'm feeling so upset and angry i would talk to the fly on the window just so he might just listen.
Anyway, how do we all manage as carers? I would never give in on Steph cos i love her to bits but sometimes i get so pissed off with her and the cancer!
Ali.x

ramonajane

Welcome alib and lv2camp - glad you've joined us.

kimmy - thanks for the tip about the Mautner Project. Its a fabulous resource for those in the area. I know someone on their Board and he has good things to say about it. I'm not in DC, but if I was, I'd investigate their offerings.

Whew! I haven't posted in awhile, though I've poked my head in to read when I can. I'm glad this thread is taking off. It is important to have places for us to connect when we can.

We asked for Sandy's case to be brought to the Tumor Board because one opinion seemed too scary to go on. She had a mastectomy on 7/25 - tumor was .9 cm, ER+, PR+, Her2 neg, and Grade 2. She has ILC. She got FABULOUS margins, which was a relief.

Our onc said "anything under 1 cm doesn't need chemo". But hell, San's only 45, healthy, stubborn, determined, and willing to go through chemo if it was thought to be needed. The difference betwee .9 and 1 cm just felt too close to only have one opinion.

The ENTIRE tumor board said they wouldn't recommend chemo for her case. So, she was very comfortable with that, and decided to not seek any more opinions. She is in the driver's seat and if she is comfortable with it, then I am too. Its her body. If I thought something was SUPER fishy, I'd speak up, but I think she did her due diligence.

So, no chemo. She started Arimidex this week. She's NOT thrilled about a daily medication, and actually is quite anxious about it. She's hit a huge "emotional speedbump" I think - and the Arimidex is just one piece of it.

Caregiving is really quite an adventure, isn't it? Sometimes its hard to keep up day-to-day on what caregiving is needed, and what the person would like to do for themselves. Both physically and emotionally.

I'm going to a cancer caregivers support group in early September. I've missed the two August meetings, but think it will still be helpful in a few weeks. Even though lots of "direct care" will be over by then, there are still things I'd like to talk about. Anyone ever been to one?

OK, I'm rambling here. Thanks for listening.

I'm glad to hear updates from you all. You chemo gals and chemo caregivers have my most sincere healing thoughts coming your way. Please do keep us posted.

namaste,
ramonajane

lv2cmp

Hello everyone and glad to find a place to feel more than welcome.

Kimmy-too I almost didnt recognize you with the new pic. Wow! I am so used to seeing the back of your head it threw me off. Thanks for the group and if I was closer to DC I would sure check it out but unfortunately I am too far away.

Lindamik good luck on Friday. Peeing alot is a good thing. It helps to get all of those toxins out. I suppose power of the mind but after chemo I could just imagine all of those bad things exiting my body. Weird, yeah I know but whatever it takes to get through it. I can only imagine what it felt like to hear the news about the bloodwork. I hate it was a mistake and that it had to be redone but then again glad it was a mistake and her numbers were good. I took neulasta after every treatment and never had my numbers to drop. In fact, two times I had to skip the shot because they said my body was over reacting to it and producing way too many white blood cells. Leave it to me to be weird. I took kytril so if nausea was to keep going you might want to check into it. Very expensive (very very) so if you dont have the drug card be prepared. It seems like it was 1200.00 and that was for like 12 pills or so. My memory escapes me but it was outrageous.

Ramonajane glad to hear things are going well for you. Good news on no chemo for your partner. I know that has to bring a sigh of relief but I do understand how you are concerned if she doesnt take chemo. It sounds like you two have done everything possible though to make the right decision. I know it seems weird but I was not given the choice of not having chemo and I didnt want it but by not given a choice it kindof made it easier also. Guess I rambled on that one but hopefully got my point across.

As far as caregiving,,hmmmmmmm. What can I say? Everybody is different in what they want people to do for them. Some are more than happy to have others help and then some of us are too stubborn and want to do it on our own. I felt both ways at times and I am sure it gave my partner a headache more than once trying to figure out what "type" of person I was each day. I think the one thing I can remember is how strong she was being when I was finding out everything. She constantly kept telling me things would work out and we will do what is right and go where we need to go. I appreciated the positive attitude but in the back of my mind I couldnt see how she wasnt worried. I finally had enough and asked her and she said she was afraid to let me see her concern because she needed to be the strong one at this time and let me know that I could always lean on her. I appreciated the thoughts but there I was thinking I was the only one losing my mind over the many decisions. I am normally the calm cool person but this was driving me insane and there she was saying everything is fine. Well, once she understood that I wanted to know that she was scared it helped. It helped me to see that I wasnt scared alone.
Communication is the key in anything but especially when there is something like this between you.

Ramonajane since your partner is on Armidex I am assuming she is post menopausal is that correct? Just asking because I know that can really change "things". How are you two handling it? I have concerns there and I fall into the category of I want my mojo back,,lol. It is slowly going away and I hate it. I refuse to give in.

Great to hear from everyone!

ramonajane

lv2cmp - about the mojo...important question.

My partner had a hysterectomy in 2002. They said that would decrease libido. Nope. It didn't - not for her.

They did blood tests, therefore, to find out her menopausal status. We were sure she was at least peri-menopausal, because she'd been having severe hotflashes in the months prior to the BC dx.

Blood tests came back that she was menopausal, hence the Arimidex. Decreased libido is one of the side-effects listed for that, too, so we'll just have to wait and see.

I like your attitude - don't give in! I am a firm believer that Lesbian Bed Death is a myth.

Back to work, but wanted to answer you while I was thinking of it.

Thanks for acknowledging the weirdness of the no chemo thing, BTW. It felt strange to even post it here, like we got off easy or something. But I just keep reminding myself that everyone's journey is different, and we are not here to race or compare but to support and lift one another up.

namaste,
rj

alib

My first post is wrong, sozzy.
Steph is having chemo, will be having her 4th next Tues. Then mastecomy after chemo cos she was mis diagnosed for over a yr, now "richard the tumor" is 8cm's in size!
What happens after surgery we don't know for sure.
All at 31, poor girl, brave, strong at times and yet so deep in depression other times.
Suppose i just go with the ride of hell?
Ali

lindamik

Hi all, It is so good to see the new posts here.

RJ, Absolutely wonderful news, so glad for both of you. I can understand your feeling about not wanting to post, however we need you here. You bring support and hope and that is what this is all about.

Live, How is Kathleen doing? Is her Mom still there helping out.

Alib, It can be the ride from hell, however you will get through it. What type of chemo is Steph getting? I assume it is weekly. Be strong for her and stay positive.

Lv2camp, Kerri had her second chemo Friday and she seems a lot more tired this time. Doc said she has a little bit of thrush and Kerri was very worried about it. Was unable to sleep last night and spent the entire night thinking about it and ended up getting sick. I gave her a compazine and probably should have given her the Ativan, it would have helped her get back to sleep. I guess I wasn't prepared for it, since she did so well after her first treatment. The Comp. did not help her and she was up all night. When she did finally fall asleep she slept all day. I have to admit I am getting antsy about putting her to bed tonight. I think I will just give her the Ativan and not take any chances. I could probably use one myself, I have been sick all day from lack of sleep. I have heard of the $100.00 nausea pill !! I cannot understand how they can get away with charging that much for a pill, After all, just how much can they pack into one little pill? Kerri is on Medicaid and so far they have paid for everything. Come January though Medicare will take over the meds and she will have a co-pay, no idea how much that will be, but hopefully these meds will be over by then. She is on 4 different meds daily for the side effects from the anuerysm and dimentia.

The onc scheduled the next chemo however did not schedule another neulasta shot. Is this common? I thought she would get the shot after each treatment.

You are all in my thoughts and prayers. Linda

lv2cmp

Sorry you had such a rough night Linda. The ativan would have probably helped but if you are like me I hated taking anything. I felt like the chemo was enough of the strong meds and I didnt want anything else. Luckily I did not get sick. I did deal with the dreaded constipation on my 1st four treatments of epirubicin and cytoxin so had to drink something for that to get things moving. (TMI I know) and then on the last 4 treatments of taxotere i was right opposite and had to take something to stop going. Fun fun!

As far as the neulasta shots being common I wouldnt want to answer that. Mine was scheduled for everytime but I did not get it twice because my white blood cells had went into overtime and overproduced. If her white blood count was down I would ask why she couldnt have it.

As far as the anti nausea meds it is crazy that it can be that expensive. Thank goodness for insurance! I had a script for compazine but I never had to take it. I took the kytril for 2 days following chemo and that was it besides the 2 days of the steroid. They also gave me aloxi in an iv before my chemo to prevent nausea. Whatever the cocktail was it was excellent because it worked.

Glad to hear everyone else seems to be doing fine. The weekend here was excellent and the weather finally came out of the 90's so it was nice to relax outside and even feel a little breeze. Rain is due to head this way from the hurricane but hopefully it is only rain and no tornados.

Hope everyone has a great week and can enjoy the long labor day weekend coming up.

livestrong

Hello everyone,

I'd like to join the others in welcoming lv2cmp and alib to this thread. The more the merrier. Lv2cmp, I hope you weren't in Katrina's path - looks like parts of Alabama were severely impacted.

RJ, it's nice to hear from you again. I think it's great that Sandy doesn't need the chemo and I too would feel confident about the decision with the whole tumor board behind it. I'm very interested in hearing how Sandy does on the Arimidex, as we have that in our future. Keep us posted.

Glad the topic of mojo came up. We've been a bit worried about the combined effects of chemo, menopause, and Arimidex. Has anyone read the "I want my mojo back!" thread under the "Moving Beyond Cancer" topic? We're trying the "use it or lose it" strategy endorsed there. I have to say that it's a challenge when K has so few days that she feels well enough even for routine daily activities, let alone "extracurricular" ones, but we're trying.

Linda, sorry Kerri had a rougher time with her second chemo. How did it go the next night - did you give her the Atvian? Seems like that would take care of both the insomnia and nausea. K has a terrible time sleeping on infusion night. She's not nauseated, just wired from the steroids. The first week she was literally up all night. The next week she tried a Benadryl and that helped a bit, but she was still up most of the night. Now she takes Ambien on infusion night and the night after. I THINK it's an improvement, because she does sleep, but her sleep is very restless on infusion night (LOTS of tossing and turning and kicking). I've been sleeping on the couch on those nights because of the tossing and turning and kicking me! This last infusion we had a fun adventure in the middle of the night. I awoke to loud noises in the kitchen and found her sleepwalking. She had gotten a bowl of fruit out of the refrigerator and was rummaging through the utensil drawer. I asked her what she was doing and she replied: "Looking for a fork". I got one for her and then helped her over to the kitchen table (she was very wobbly on her feet). She proceeded to scarf down the fruit and every once-in-a-while would say something completely nonsensical. When she was done I helped her to bed and she slept through the rest of the night. I had a hard time falling back to sleep as I kept listening for her getting up again. I have to say the experience scared me as I thought of all the ways that she could have hurt herself (falling down the basement stairs, for instance). She remembers absolutely nothing of the experience. Not sure what to do this week. I think the sleep is very important so I want her to take the Ambien, but I'm worried about another sleepwalking episode. Maybe the answer is to feed her a snack before bedtime!

Linda, don't know what to say about the Neulasta shot. K's regimen is so different - she gives herself Neupogen shots every day except infusion day. They do blood labs every week to check her counts. Do you have a nurse or other contact person that you can call and ask to set your mind at ease and make sure that it's not an oversight?

Well, K's hair is gone. It started falling out last week and she got a buzz cut. Then over the weekend it started falling out in earnest and by this morning she looked like a fledgling. While I was at work she borrowed the neighbor's clippers and took the rest off, then shaved the remaining nubs. It's a definite transformation - she looks like a cancer patient now and I feel like we've crossed some sort of threshold. More on this later as I process it and see what the public reaction is. She did a very good job but did miss a few spots on the back of her head so I went over the whole head again with a razor. This evening she's been trying on various hats and scarves, trying to find something that works. Interestingly, she had so much hair before that her hats no longer fit her (too big) now that she's sans hair. So far the bandanas look the best though she hasn't kept anything on for more than 1/2 hour (too hot). Tomorrow she's going to work for the afternoon and says she's not going to wear anything at all but I bet when the time comes she'll throw on a bandana.

Speaking of work, she's decided to take a medical leave from work. She's a 2nd grade teacher (very demanding job) and wouldn't be able to manage more than 2 days a week with the fatigue. Logistically it would be very difficult to have another teacher take her class for the rest of the week, so she thinks it's better to take a leave and go back to work after the AC. Hopefully she'll be able to manage to work though radiation and the second chemo (a taxane but we don't know which one yet).

Well, I've rambled on again. Hope everyone is doing well tonight, especially lv2cmp and anyone else in a hurricane-affected area. You are all in my thoughts.

lv2cmp

Hello everyone,
Things here are good. I am in Northeast Alabama and we had wind and rain and the wind is still rather strong but other than that no problems. Schools are delayed for a few hours this morning because of down trees. I just hope everyone in Louisiana and Mississippi and Lower Alabama are doing ok. It is still too early to know the amount of damage that Katrina has caused.

Glad to know I am not the only one with mojo on the brain,,,LOL! I too have taken on the "use it or lose it" and refuse to lose it! I have already lost things dealing with this whole BC thing and that is one thing I would like to keep a tight grasp on. So far so good. I must admit it is not on my mind as much as in the past but at least it is still there. I guess the best description could be that its still there but it just has to have a lil kick start now where before it was always ready to go.

As far as losing the hair I thought that was not as bad as I had anticipated. Believe me, it got old but shaving it off was the way to go. It started coming out and was all over the place and I couldnt take it any longer. I did wear hats but it was winter so it wasnt too bad. I never wore one on the inside unless I was cold so everybody saw my bald head. Take it or leave it! I have hair now, not alot by any stretch of the imagination but its hair. It is curly and never had a curly hair on my body so I must admit it is kinda fun. So many people complain when theirs comes back in so I hesitate in saying this but I like my hair more now than I did before. I look like a short curly perm and can be ready in a flash. I dont know how long the curly will last but whatever it does should be fine. I've been without so what can be worse I suppose.

Glad to see everyone is doing well. Hang in there! I am one year out from diagnosis and it seems like so long ago and at times it is hard to even imagine that I went through what I went through. I finished everything in January 05 so I suppose that is when I celebrate my 1 year out of treatment and no reoccurence but I enjoyed celebrating my 1 year since diagnosis also. I figure any reason to celebrate is a good one. Lets see now,,what can be next???? I can celebrate 1 year from SNB and lumpectomy and then 1 year from start of chemo then I can celebrate 1 year ending chemo and last but not least 1 year from bi lateral surgery. Looks like a year of celebration and sometime in there I will have reconstruction. It is scheduled in Oct in New Orleans but who knows if that will go on now with all the damage they may have there. Oh well,,time will tell!

lindamik

Hi Everyone,

Kerri is doing a lot better, Ativan really helped. She has no appetite and has to really be prompted to eat. We did find that she can eat her weight in potato perogies so if that is what we have to have every night, then so be it. She has lost about 5 pounds already and the onc says if she loses another 5 she will put her on a supplement. She says she is not sick, she is just not hungry. I will call the onc to see about the neulasta for the next treatment and find out if she will have blood draws again this time. I think it is just an oversight, we will see.

Live, I had a visual of K going into school bald, I'll bet she opted for the turban.

Lv2, Can't wait until this is behind us and we too can have that year of celebration. Thanks for the hope and inspiration. Glad to hear you are out of the direct line from the wrath of Katrina. Ohio is just getting the heavy wind and rain today.

Wishing everyone a peaceful evening and a great day tomorrow. Linda

mpetago

Hi Ladies!

Just have a minute to jump in here and see how everyone is doing. The new job is wearing me out; at the same time, it's so nice to have something close to "normal" life back after the last year. Haven't told anyone at my job that I'm a BC survivor - there's a long probationary period and I'm a little paranoid I guess.

Just wanted to mention that when I was on A/C, Ativan saved me a couple of times. I had trouble sleeping with taxotere mainly because of bone pain, but with A/C it was this all-over sick and miserable kind of thing - Shuniece says I too was a wild sleeper and would cry in my sleep sometimes. On the really bad nights, I would take a shower and an Ativan and it really helped. I also took Compazine for the first few days too - I didn't feel like it helped that much, but I always took it anyway - figured if it was doing anything at all then I better not stop!

I didn't lose any weight on chemo, actually gained about 40 pounds by the end of it. Think alot of it was steroids / water weight though, because half of that came off with no effort in the first few months. The other half came from the chicken nuggets and chocolate shakes I lived on for months - it was the only thing I could stand to eat.

I was never given either Neulasta or Neupogen, Onc said Medicaid wouldn't pay for it so I had to suffer through?? And my WBC dropped to nothing a couple times on A/C - .5 one time and .7 another time - so if Neulasta has been approved, I'd insist on knowing why I wasn't receiving it because A/C does a number on your counts and at those times, I felt like I had been hit by a mack truck. Plus ended up with a delayed chemo schedule - just what I needed when I was already on the 6 and-a-half month chemo schedule!

Well I'll post more later - off to work - but also wanted to welcome lv2cmp and alib to the thread! Every time a new person posts, it makes me happy that we're not all hanging out there in limbo telling half our story all the time.

Melanie

lv2cmp

Hi Melanie and thanks for the welcome. Loved your statement about "telling half our story all the time" because that is exactly how I felt. I sometimes sensor myself when posting on here so as to not offend anyone. I know that sounds crazy but it happens without even thinking about it.
I too know what it is like to gain weight during chemo. I am sure some of it was the steroids (or at least I feel better convincing myself of that) but alot had to do with me living on potatoes and milkshakes. Some of it came right off when I started behaving again but I still am holding on to a little bit that I would like to get rid of.
Linda,,glad to hear Kerri is doing much better. From reading on here Ativan has been a lifesaver to many people.
Once again, glad to hear that everyone is doing well. My thoughts go out to all of the people suffering in NOLA and to the Mississippi and Alabama coastlines.

SpanArtist

Hi everybody,

I just found this thread, and am a lesbian. I was dx last October and have been through lumpectomy, dose-dense chemo (4 rounds AC and 4 rounds Taxol/Herceptin), 35 rads, and am still on Herceptin for a total of a year, plus have been on Arimidex for a couple of months and will continue that for 5 yrs. total. I feel I tolerated treatment very well...no nausea (with the help of drugs, of course), no skin burns...the main side effect was fatigue, but that's gone now. I was very healthy going into it, and in the way of doing everything I can to beat this disease, I continue to exercise regularly (have been walking, skating and road-biking for 18 yrs.), continue to eat a low-fat, very healthy diet, and don't smoke or drink.

I found the lump...turned out to be IDC, 1 cm, with 15% still being DCIS. It was ER/PR+, Her2/neu+ and Grade 3, and my surgeon took 4 nodes in a SNB and all were neg., so I was stage 1. I'm 54 and my partner of 3 1/2 yrs., Cindy, just turned 45. We live in Florida (central Gulf coast).

I've posted mostly on another thread, "I WANT MY MOJO BACK" under Moving Beyond Cancer (great thread!) and identified myself as a lesbian. It's late now, so I won't write much tonight, but I kind of skimmed through all the posts here and just wanted to say "hi" and add this thread as one of my favorites, as I also have felt a need for connection with other lesbians going through this, and I agree with those of you who've said that the women on these boards seem not to be homophobic. As a lesbian, I've had nothing but support from all of them! The focus here is supporting each other as women fighting BC.

I'll look forward to becoming involved in the discussions in this thread!

Hugs to all of you!
Liza

Mena

LIZA!!!!! Where the hell have you been???? Does this mean you're leaving Mojo? Will you still pop in??? Puhleeze....remember, you are my Researcher in Residence.

How wonderful you guys started this thread for one another! While I'm not a lesbian, I was wondering why there wasn't a "forum" before. What took so long?

This is great! I bet it becomes quite an active thread. Everyone needs a soft place to fall. I'm happy to see y'all have found one another. Good for you, and for everyone who has been waiting for this....xo

imhere4u

Good morning ladies, I hope everyone is doing well today! I haven't been on for awhile so today I'm playing catch up. I'm not very good with remembering names so please bear with me lol!

I first wanted to welcome Liza, I hope you find the support you need here. I am so glad that we now found a place where we all can feel comfortable and be who we are!

I am on arimidex and have been for over a year now. I must say its not too bad. They tryed first to put my on tamoxifin but that drug and me didnt get along very well. So my dr pulled me off of it and out me on arimidex. I am still trying to go through menopause and will hopefully accomplish that soon. lol As far as the mojo goes......I'm on the use it or lost it method! I think that is the best route to take. I can tell you after a year of arimidex and using my method everything is still in working order, you just have to do it!Even when I was in chemo I wanted to make love when I felt up to it. My partner was worrried about it. I told her if I feel like I can than just roll with me! Somethings that are important to us you have to fight for. I can tell you that area of my life is and always has been very important!

For all of you ladies that are on chemo now......I can tell you that eating small meals often will help very much with the nausea. I found that I ate things that I never really cared for before....yogurt being one of them. So ladies eat what tasts good to you because something is better than nothing. Be sure to drink lots of water, as it will help flush the chemo out of your body. I took my nausea meds for the first few days even if I didnt have the nausea at the time. It is better that way than when it gets out of control. It is a very hard time when you are on chemo for yourself and your partner, but hang in there it does get better! Honestly the whole journey is very emotional to say the least. I had my up days and my down days. I was blessed to have a partner that cheered me on every step of the way. She kept telling me that soon I would be done, very soon! We are getting ready to celebrate our 3rd anniversary Sept. 23rd! Woohoo!!! We have been through so much together and enjoy every moment we can now.

I'm not sure who it was that was talking about celebrating every milestone, but I'm with you on that one. I never knew when you suppose to celebrate your anniversaries, so I agree with that one! lol lol Do we celebrate when we finished treatment, when it was removed from our bodies in surgery, when we first got dx????? so I agree we just celebrate them all

I hope this finds everyone hanging in there and moving forward. Just keep in mind that you will get through it all and have your life back.......better than ever!

My life now is pretty much back to normal, what ever that is lol lol I still have my moments where fear wants to creep in but I keep pushing those thoughts to the rear. I finished my last treatment on year ago June 14th of 2004. All of you ladies will be saying the same thing before you know it!

So take care of one another and keep those chins up, tomorrow is a brand new day........Rita

KarenFL

Hi everyone,
I also want to give you my 1000% support, I am not lesbian, but have friends that are. I have read your posts and you all have so much courage in walking this path with each other.. I am so glad that you have found each other!!
As imhere4u says... tomorrow is a brand new day! I love that, as each day has stress of it's own.. so just keep going forward for tomorrow.

imhere4u

Dear Karen, thank you so much for your support! It means more than you know. We are all sisters in this fight! It makes me very happy to know that ladies out there accept us and support us no matter what. Karen you have made my day and many others I'm sure. It is a hard road for us all, but one that we will get through with the love and support of one another! Karen its women like you and others that make it all possible. You are so right with God all things are possible!........Rita

mpetago

Hi Ladies! Just thought I'd better bump this up - haven't been on in awhile and thought we'd lost our thread!! How's everyone doing???

Melanie

lesleyA

im a new one in this position.(not new to supporting.just new to in here!!) i posted in the recurrance and mets bit. title waiting and worying. i hav no idea how to put it in here too!!
but hello anyway.

mpetago

Hi Everyone!

Welcome Lesley - I read your posts under recurrence - and I'm so sorry you and Sacha are stuck in that awful "waiting" place right now. One of the awesome women on this board (Kimmytoo) has often referred to it as being "up a crazy tree" or something to that effect, and it describes the feeling perfectly. I was diagnosed in February 2004 and finished treatment in December 2004, and recently had a scare of my own.

Noticed a hard, oblong lump below the mast scar about 4 months ago - and then due to having just moved to a new state - had to wait 2 MONTHS to have it checked out. When I arrived for the Ultrasound / biopsy, I had a confusing exchange with the receptionist who kept insisting that they needed my mammogram films to proceed - after I spent 45 minutes in the waiting room, I learned why. I had been scheduled for a left mammogram on my non-existent left breast. Great. Had to come back four hours later - now alone because Shuniece had to get our son from daycare (from some unknown crappy reason I always seem to end up alone for this kind of thing) - but anyway, I had the U/S - and thank god, there was nothing to biopsy - because the tissue was identical to the rest of my tissue in the area. That is to say, the hardened area was entirely composed of the same "beef jerky" I have in the rest of the radiation field, and worse there because of constant bra strap friction I think. The whole thing did a number on me though.

I didn't mention it to anyone for awhile - and then the few people I did mention it to had this kind of irritated reaction - so Shuniece and I just dealt with it ourselves - just like the first go around. Don't know what I'd ever do without her, but I also have this desire to pretend this whole thing is over and done to the extent that I don't even want to go to the doctor right now - because I hate that she's had to carry all this for so long with no help or support and I just want to give her back our "normal" life for as long as possible. Yes, I'm in denial. And it's pretty much working for me at the moment.

One thing that I've really felt good about is that I'm helping a group of Katrina evacuees as part of my job who relocated here. That's also the reason I haven't posted for awhile - because I am beyond exhausted. But it feels good to me to go that extra mile for them, because it was total strangers who stepped up and did that for us when I was in treatment. And I figured out yesterday that there was an additional reason why I needed to be on this "project," a very young lesbian couple from Louisiana had applied for our housing program - and when I was handed their application - my co-worker and boss kept referring to her partner as her "adult friend," "roommate" and "co-applicant." And the whole time we're interviewing them, they're exchanging nervous glances and just nodding everytime the "roommate" talk comes up. WTF??!! I mean really, they had tatoos of each other's names and were wearing matching rainbow rings - surely this wasn't something only "Melanie - our new lesbian employee" could have figured out. Needless to say, I immediately acknowledged them as partners in front of my co-worker and corrected the applications to reflect that. And their relief was instant and so obvious; I was so glad I was there right at that moment. They were afraid their application would be denied or they'd have to live separately if they didn't go along with the "roommate" thing. That just broke my heart - and after all they've been through already.

Sorry this is such a long post - but I have only one other thing to report - and then I want updates from everyone else who feels up to it because you've all been on my mind!! My new job officially sucks, especially my supervisor - who, as it turns out, is a complete moron in every respect. But, having said that, I have to tell you that the office politics really don't bother me now the way they always did before. None of them know that I've had breast cancer yet, and I know they're trying to figure out why I show up to work smiling every day and just keep smiling while they rush around trying to make each other miserable all week. For now, I'm just letting them believe that I'm naive, mysterious, a Suzy Sunshine or whatever they want, because my only motive is to get a paycheck and help our clients as much as I can, then go home and enjoy my family to the fullest.

Breast cancer definitely forced me to get my priorities straight and quit wasting precious time and energy on negative people and situations that are ultimately a dead-end. Along those lines, I wore a shirt the other day that revealed the tatoo I have of Shuniece's name on my arm the other day (we got them to celebrate our 4th anniversary and the end of treatment), and one of my co-workers immediately started in about how you should never do that because you never really KNOW if a relationship will last and if that person will always be there for you and so on, and I just smiled and said, "actually, I DO know she'll be there for me, 100% and no matter what" and left it at that. So, on that note, I want to say to all the partners on this thread, the fact that you stepped up and slid into the seat next to us on this terrifying rollercoaster ride means more than anyone who hasn't taken that ride can ever know. Fighting breast cancer is hell, but the gift that your survivor partners receive through this is the complete and unshakeable confidence that we are loved unconditionally and fully by you. Shuniece didn't leave me on the platform to ride alone, and she's never once screamed to get off no matter how scary the ride has been - and that is why I walk into a room full of petty, bickering people every day and just smile. So this month, and every month, you are the people I'm going to be aware of and celebrate!!!

Big, Giant Hugs to all of you,

Melanie

livestrong

Hello and welcome Sullivan35. I went back and read your posts in Recurrence and Mets - sorry you're going through this. Sounds like there's a good chance that everything will be fine but I know the waiting is so stressful. It sounds like you and your partner have a good open relationship and are communicating well. I think that helps a lot for getting through stressful periods. My partner was diagnosed in June and for me the worst time was in the beginning - facing the unknown, and putting up with the seemingly endless waiting to find out what we were up against. First, waiting for the biopsy path report, then the meeting with the treatment team, then waiting for the surgical path report, on and on... Once she started chemo, my anxiety reduced quite a bit. For you, I imagine it's terrifying right now, because you don't know what's going on and what to expect. Try not to let your mind jump too far ahead (coming from an expert in that area so I know it's easier said than done!) and just take it one step at a time.

As for what you can do to support her, it sounds to me like you're already doing a lot - going to appointments and being present to talk about what you both are going through and feeling. I find that it helps too to ask my partner periodically what she needs. And it helps me to remember that, although it affects me, this is her disease and she gets to decide how to deal with it. The only advice I have for you now is to remember to take care of yourself too and seek out support for yourself outside the relationship. Keep coming here and "talking" to us.

I hope everything goes well with your next appointment - please come back and update us. You and your partner are in my thoughts.

lesleyA

Thank you much melanie and livestrong for taking the time to reply to my post, it is really appreciated.melanie your lump sounds very similar and that has made me feel abit better!
we went for the appointment and im not at all sure what to make of it at all!!
we saw the oncologist who has looked after her for the last six years, he felt about abit( though in my view not enough, he didnt even feel under her arms though sach had said she felt pulling under there!!) he then said " well it doesnt FEEL like a cancer" and had no intention of doing anything else!!because we said we think the boob has changed shape a bit, and feels less hard we raised the poss that the implant may have ruptured a bit.( this is not the original poorly boob but the one that came off "just in case") only because of that he is sending us to a breast specialist... the one who missed the original lump in the 1st place, so that by the time sach was finally diagnosed it was grade3 and in her nodes aswell!
but he has given us no clue how quickly we will be seen and only said she MAY want to scan in case the implant has ruptured! i am going mad with worry!!
sach bless her just thinks that the onc would know and that if he feels its nothing then it is nothing!! i so wanted him to test it there and then!He cant tell by feeling can he, i know he does it every day,but its our lives, mental well being as well as physical he should be considering.
i am going to wait a couple of days to se if the appoinmt comes and then ring to find out where it is and how quickly we will be seen. Do you think it will be quick?will they send an appointment out urgently if they are viewing as a possible leak or rupture??
melanie you are doind a wonderful job and i think what you did for those women in this awful time would have made a world of differnce... what o lovely thing to know you did.x
thanks livestrong for your advice . I will heed it. I will also keep coming in here to talk to you all as it really hlps me. sach hates having"cancer" discussions and would rather it wasnt part of our lives.There is no way she would come in here but as i said it helps me.
thank you.

lelsy.
ps can you tell me why my waiting and worrying update didnt go into active topics? i didnt want all the lovely people who replied to me to think i didnt pop back to tell them how it went ? also i cant see how to post another topic if i want to? i did e mail the moderator but havnt had a reply. thank you so much my rainbow warriers!!xxxxxxxxxxxxxx

aprilmaestri

Hi Melanie and everyone else! I am not a lesbian and sort of feel like a voyeur reading your posts. But it helps me to see what all women are going through and not just the heterosexual ones. I think it's wonderful Melanie that you were there and were able to make those women feel that someone was there to help them. I hate that they felt like they had to hide their relationship. It's great that you have a partner that is 100% committed to you in your battle. Everyone should be so lucky. I have no profound words of wisdom for you I just wanted to say "you go girl!" and keep up the fight.