Lesbians Supporting A Partner Who Has BC

Hooray!!!! I had just about given up hope!! I'm the partner with the BC, and the only one of us who gets online (and according to her, constantly!), but would love to have someone to talk to about some of the issues we have / have had throughout this whole thing. I've been on these boards since right after being diagnosed and the women here have been unequivocally wonderful and supportive without exception, but it is really nice to have a place to talk about issues that come up as a lesbian with cancer - so count me in!! Thank you!!

Melanie

RJ,

I can certainly relate to the pre-surgery anxiety. I had plenty of it, though I have to say that my partner (who was having the suregery), didn't seem at all concerned. (I'm the worrier of the family.) The event itself was WAY easier than expected for both of us, and in retrospect certainly didn't merit all the worrying. (Easy to say in hindsight.) Obviously, a mastectomy is a more invasive procedure than a lumpectomy, but my impression from these boards and other sources is that it is usually a lot easier than expected.

Do you have anyone to hang out with you in the waiting room during the surgery? My partner's parents were here, and even though ahead-of-time we weren't relishing their visit (they live a couple of states away), it actually was really nice to have them there. I was too nervous to read and it was nice to have someone to talk to and to share the nervousness with. We were at the hospital all day, starting at 7am (she had several pre-op procedures: wire localization, dye injection for SNB, etc.) and the other helpful aspect of their being there was that I was able to go home for a bit in the middle of it all to feed pets, etc., knowing that someone was still at the hospital watching after her. I hadn't thought about this ahead of time, and would recommend asking someone to accompany you for moral and logistical support if you haven't already.

Are you planning on spending the night in the hospital with your partner? I was a bit nervous about asking whether I could stay - wasn't sure what the policy was on overnight stays - but the nurse beat me to the question and showed me how to fold out the bed and where to get linens for the bed. Our entire surgery experience was very positive, filled with caring and thoughtful medical personnel. BTW, since the diagnosis, noone that we've encountered so far in the medical field has batted an eye about us being a couple. I feel like this has been a real blessing as I really couldn't deal with that extra stress right now.

Waiting for the path report was hard, but fortunately we got good news: clean margins and negative nodes. I'll send positive thoughts your way for similar results.

As for your other post regarding keeping in touch, I don't have strong feelings one way or another. Maybe we can do a little mix of both? It might be nice to keep at least a small presence on these boards for other lesbians that come along. I will PM you my e-mail address so that you have it regardless of what we decide to do.

I know it's a lot easier said than done, but try to relax this weekend and not worry too much about Monday. Send us an update as soon as you can.

Ditto with Lilia;

Thanks for sharing, and being brave - I too, am not a Lesbian, but my daughter is - she doesn't have bc, I do. This gives me insight.

Please stay, there's nothing but support for us women who are battling bc, regardless of who you live/sleep with.

HERO

Hi Ladies, Can I join? I was so desperately looking for a chat room or message board but to find this one was a miracel for sure. Kerri and I have been together 22 years. Kerri had a brain anuerysm that ruptured 8 years ago. She has dementia and now has been diagnosed with breast cancer. She underwent a mastectomy last month. Estrogen receptor, her2-, 1.5 cm., they found a small amount in the first node. We are now facing the decision of pill for 5 years or chemo. First appt is set for next Fri. the 5th. She is so fragile to us mentally that sometimes we forget she is physically strong. Kerri wants chemo, she wants every chance she can get. Can anyone tell me what to expect? Just how sick will she get? It is so good to have a sisterhood to share this with, I just don't know that I am going to survive this all. Looking forward to sharing and caring. God Bless You all, Linda

Hi Livestrong, Thanks so much for the suggestions. I am not able to join in the chat rooms as my computer locks up every time I get in. So reading these boards have become my therapy. The doctor has suggested the A/C treatment, every 3 weeks for 4 cycles. This is so difficult. I do not believe Kerri is fully aware of the possible side effects and yet we do not want to deny her any treatment that will help. The onc. has said Kerri has a 75% of non-recurrence with hormone therapy and 80% with chemo and hormone. Because she has a shunt in her head she is at a higher risk if she gets an infection. Her anuerysm was coiled 8 years ago and there is always a possibility of a second bleed if she gets extremely sick, vomiting etc. We have also heard of chemo-brain, the possiblity of her losing her awareness and not being able to regain it scares us to death. We have kept her healthy and her mind active for 8 years. We are meeting with her daughters tomorrow to make the decision. I believe we are all leaning toward the hormone therapy alone. I don't know if we will be happy with that, it just seems like we should be doing more. I am going to scout the boards and see if I can find someone that was succesful with just the pill. Trying to turn this over to God, but it't not easy. Good luck to you both. Will be watching for your progress. Linda

Welcome Ladies,

Lesbian or not...we are women and in this together. I attended a beautiful wedding ceremony last month. My dear friend married...YES married her long time partner because here in wonderful Canada, you can!! I think it's shameful that people are treated that way in a hospital, insurance or not . I am a nurse in a hospital setting and cannot imagine that being tolerated in my hospital.
Anyway girls, welcome to the boards,

All the best, hope everyone is feeling well
Tina

Good morning all,

Melanie - well put sister. A very eloquent description of why we need a safe place to discuss these issues.

Tina - Canada is so far ahead of the U.S. in so many respects, and same-sex marriage just takes the cake. Many of us seriously thought about moving north after the 2004 election...but that's another story for a different forum. In the meantime, we visit Vancouver, one of my favorite cities in the world and only a 3-hr drive away, as often as possible. Hoping someday that the U.S. will follow Canada's awesome lead.

Linda - you sound like you're in a much better space not that you have plan. I find the decision-making and endless waiting so stressful. It sounds like a very reasonable decision that your family has come to and I'll keep my fingers crossed that Kerri tolerates the chemo well. Kathleen starts chemo this Thursday, so we'll be starting the chemo chapter together.

Today we have an appointment with the oncologist to go over the chemo treatment. I have a long list of questions to ask, principally about the efficacy and safety of the "dose-denser" weekly treatment that Kathleen will be getting. Right after the appt. with the doctor we meet with the oncology nurse, I suppose to go over all the nitty-gritty details of the treament and precautions, etc. Thursday Kathleen gets her port inserted and then has an infusion the same afternoon. That seems like a lot all on one day and I will be asking about that today too. I'm worried that anasthesia on the same day as the chemo makes it more likely that she will have a poor reaction to the chemo. All those toxins for the liver to deal with!

We spent the weekend (her last "normal" weekend for many months) doing things that we may not be able to do after treatment starts. We had many nice meals and went for a bike ride yesterday. Last night I made a beautiful summer fruit dessert (on this month's cover of Gourmet, if you happen to be near a newsstand) with peaches and blueberries. Defintely a keeper. (If anyone is thinking of making it, contact me because I think the recipe needs a few changes.)

RJ - how are you two doing? How is Sandy feeling?

I hope everyone has a good week.

RJ - Great news on Sandy's path report! All great prognostic indicators. Regarding to chemo or not to chemo, by all means gather more information until you feel comfortable with the ultimate decision. We found it helpful to get a second opinion from an oncologist at a different institution. We ended up staying with the original doc. (even though we liked the second one better on a personal level), but it was reassuring to get another well-regarded oncologist's thoughts and know that she thought that the treatment plan was appropriate. I felt like it was a good idea to go to a different institution to be sure that we would get an "independent" second opinion. All these appointments are exhausting, but it felt very worth it to me. It also means that we have another oncologist - that we've interviewed and know we like - to turn to should we not be happy with the care that Kathleen is getting at the current institution. Another thing that really helped me in this process was seeing the recurrence statistics for the different treatment options and the incremental benefit of each additional modality. The oncologist should be able to provide you with these figures - some know the approximate numbers off the top of their heads, but for more exact figures they plug a patient's info (age, histology, size, nodes, hormone receptor status, etc) into a software program (Adjuvant: http://www.adjuvantonline.com/) and it spits out the statistics. These are only general population probabilities, but I found them very helpful. For Kathleen's situation, the probability of a relapse within 10 years without additional treatment (I don't think this includes radiation - forgot to ask) is 45.8% Adding chemotherapy lowers that probability to 22.5%. That's a no-brainer for us! Anyway, the program allows one to compare no adjuvant treatment to hormonal only, or to the combination of hormonal plus chemotherapy, etc. Once you know the added benefit of chemo it then becomes a very personal decision, but it is one that you should be allowed to make. I'm glad that the chemo question was clear-cut in Kathleen's case; a benefit of 1-3% is more of a struggle, bearing in mind the rigors of chemo and the risks of chemo-induced cardiac injury and leukemia. One caveat is that I don't think the software accounts for histology (lobular vs ductal). It seems to me that there is some suggestion that lobular tumors tend to be less aggressive and I wonder if the chemo benefit is less than for ductal. Might be something that you want to ask and, if I get a moment, I'll look through the literature to see if there's anything written about it. One more thing, have any of Sandy's doctors suggested genetic testing for the BRCA genes? Depending on how extensive Sandy's family history is, and at what ages her relatives were diagnosed, genetic testing might be indicated. My uderstanding is that women with BRCA mutations are at higher risk than women without, so that could help with any treatment decisions. Okay, enough on that topic and on to others.

Our appointments on Monday were long and many - very exhausting and a bit overwhelming. It was the hardest day for me since the surgery. I got most of my questions answered, but was disconcerted to find out that Kathleen will go on Zoladex immediately to shut down her ovaries. My initial understanding was that she would wait until after chemo for the ovarian ablation, and I thought I had months to research this and think about it. Unfortunately, the oncologist forgot to mention it in our meeting and we found out from the clinical nurse, so didn't have a chance to question the oncologist about it. Kathleen seems okay with it, so I'm trying to relax about it. After all, it is her body. I wish that I had had the chance to ask the oncologist about the difference in benefit between tamoxifen and ovarian ablation + AI so I could feel better about it. In postmenopausal women, the benefit of AIs over tamoxifen is pretty impressive, but I haven't been able to find any studies of ovarian ablation and AI in pre-menopausal women. If the benefit is small, I don't know whether Kathleen would still want to endure premature menopause. On the other hand, she seems content to go along with what the oncologist says so I don't know whether I should leave well enough alone, or bring this issue up again with her. I want to respect her ability to make decisions, but I also feel that I do have some responsibility to make sure that she has all the necessary bits to make an informed decision. I'll have to think about this some more.

The oncologist gave Kathleen a half-dozen prescriptions or so - most for side-effects (meds for the meds). I think she will have to get a pillminder to keep track of all of them. Instead of Cytoxan by infusion, she takes 2 pills daily by mouth. In addition, she takes a heartburn medication daily, Coumadin to keep her port from clotting, an antibiotic on Days 3&4 to prevent pneumocystis pneumonia, a daily injection of Neupogen that she administers herself (ick), and Compazine to USE AS NEEDED. Mel, I was surprised by this and even asked the nurse (or was it the oncologist?) about this. I said: "shouldn't she take it as a precaution before she needs it?" and the nurse said no. From what I've read on the boards it seems that most doctors recommend that patients take the anti-nausea drugs on a schedule, before they feel nauseated. Kathleen will get Decadron and Zofran in her infusion which should last about 24 hours but after that it's Compazine PRN. I don't know, maybe the weekly chemo is a low enough dose that the "as needed" works. We'll see. I found this part of the visit overwhelming - all the meds and information overload. Then we went up to get a tour of the oncology clinic where Kathleen will be getting her infusion. That's when I really fell apart (though not visibly). I don't know exactly what triggered it - all we saw was rooms with beds or chairs and the nurses, it wasn't like there were lots of sick-looking patients around. Maybe the actual physical space just made it more real for me. I had to fight back tears as we walked through. This is the hard part for me: when I feel emotional and Kathleen is feeling fine, I feel like it's not okay for me to show that I'm scared or sad because I want to be as positive as possible for her. Luckily I have a good personal support network where I can talk about my own feelings, and it's not that I don't ever share my feelings with her (we've been sad together), but it's really hard to keep it together all the time. I especially don't want to express my feelings when she's feeling so positive (which she does 95% of the time). Can anyone relate?

As for RJ's mention of Festival - that brought back memories for me too, distant ones though. I haven't been since the early 80's.

Okay, I've gone on and on. I guess I have a lot on my mind these days. I'm thankful for this forum and all your thoughts and encouragement. RJ, I hope the drain-removal went well and was painless. Linda, my thoughts will be with you and Kerri on Friday. Mel, thanks for your support. I'll post when I can and let you know how it all went.

Take care.

Hi Ladies, It is very late and my body just wants to shut down. Have been cleaning all night, why is it when you clean you end up with a mess?? I am very frustrated. I had called Kerri's physician with a couple questions, blood pressure, infection, and also reducing some of the meds she is already on. She has been incontinent for 8 years and is taking Detrol, which controls the urge. Well I figured with all these toxins her body is going to be dealing with, as well as the extra fluids we will be giving to keep her hydrated, it seemed like maybe we should stop the Detrol. I thought it was a good question. I guess I must have hit them on a bad day or something, because the PR called me back and said "Are you questioning the doctor?", I said no, I just have questions for the doctor. She said "Make an appointment, he will discuss your questions then". They just do not want to commit to anything. I guess as the day gets closer I get more anxious. Will be good to talk to the onc. again on Friday before chemo starts.
Live, Thanks for the link, I will check it out.

I think I am going to soak in a hot tub and then crash for the night.
God Bless you all, Linda

Hello there to everyone! I just found this subject and have sat here and read every story. My heart goes out to all of you. I think its wonderful that you have posted this for gay women. It is very important to have a support group for each other. Yes, I too am gay! I am all through my treatment as of June 14th of 2004! I'm not sure I will remember all of the names of the stories I read. I just want all of you to know that it may seem like a long road now, but you can do it. There is alot of great support on the board and in the chat rooms. I do know that it is very hard and seems like it will never end, but it does and you will have your life back again! I think the waiting on tests and results is the worse. As for myself I went through 2 breast surgeries, 4 rounds of ac every 3 weeks, and 33 radiation treatments. I am now currently on arimidex and have been for a year. It has been a long road and not an easy one but very doable.I just want to share with all of you some of my emotions when I was in treatment and how it effected myself and my partner. The hardest thing for me about treatment was seeing my partner try to be strong for me. We both had our moments. Sometimes alone and sometimes together. There were times that I would lay in my bed and cry out to God when I was by myself. I have to say at my lowest moments I know he was there. I hated the fact that we could not go out and do what we used to do. I tryed very hard to stay out of the public because of risks of infection. We took my treatment very seriously and did everything by the book. They tell you to limit your contac with people, like grocery stores, malls, restaurants. It was such a change in our lives. So we began to go through like drive though places to eat. We would call it our picnic's. We had alot of them together. It wasn't what we really wanted to do but it was very special to us. We also did walks on the beach early in the morning. Everything we could do became very special and important to us. We made the best out of what we had to deal with! I wasn't thrilled about going out in public because the chemo I took also took my hair! I wasn't happy with that to say the least. I had hair all the way down my back before. Now that was an experience in its self. My partner cut my hair off really short and we donated it to the LOCKS OF LOVE! She cryed as she cut it off, it was so hard for her. I am proud to say now that I have short spikey hair and everyone loves it, so it does grow back. I have decided to keep it short because I can't stand the awkward ugly stage lol lol. I have been with my partner 3 years next month. I can honestly tell you we are as close as two people can get. We both feel there isn't anything we can't conquer together. We had not been together for that long when I got dx with bc, I even told her that I would understand if she didn't think she could handle what was coming. I tryed to get her to leave me, but she didn't! I felt so bad for her, go figure and I was the one who was sick! I can tell all of you that even though you are about to go through this journey the love you have for each other with get you through, you will see! Somehow my partner always made me feel better. She just kept telling me" We are almost there baby we are almost done" I looked so forward to those words. I don't remember which woman said about how she couldnt talk about one more bc thing with her partner. We had that happen many times. Sometimes we just could not talk about it. Its almost like we had to shut it off from us even if only for a moment. Its all so emotional like a roller coaster. You will find sometimes you are up and sometimes you are very down, and thats ok. When you need to cry let it roll, it helps trust me! I pray for each and everyone woman and their partner through all of this. My advice is to do everything in your power to get well. I did just that. I did exactly what my dr told me to do. Then after that its out of your hands. I took the medicene and treatment that was recommended so that I had the best shot. I found out alot about my self during that time and so will all of you. I can tell you all that good things did come from bc in my life, sounds crazy I know. I am so sorry for going on and on. I hope I didn't put all of you to sleep. I will be praying for each and everyone of you and your partners as well. Just remember if God brings you to it, he will see you through it! Hang in there and know that you have alot of people here for you. Thanks for letting me share. I was so happy to find all of you! ..........Rita

Hello all,

Welcome Rita. Nice to hear from someone else who's made it to the other side of treatment.

Just wanted to post a quick update. So much has happened in just a few days but I will try to make it brief. Port placement and chemo was on Thursday. Kathleen had a gem of a doctor for the port placement. He was all about including the family in the process and had a long talk with me about the surgery, how the port worked, etc. He also appointed me guardian of the port - my job is to make sure that noone comes near her with a needle that is not specifically designed to be used in a port. I feel like I've been deputized. The most amazing part is that he let me WATCH the surgery from a room adjacent to the procedures room, through a glass partition (he says the administration hates when he does this). The surgery was supposed to be performed under conscious sedation but the girl is such a lightweight that she completely conked out with the first small dose of anasthesia that they gave and slept through the entire thing.

Later that afternoon she had her chemo and it all went smoothly - took about 1 hour total. Then she had the nurse teach her to administer the Neupogen shots and we were done for the day. Side effects that evening were minimal: a bit of transient nausea, pain from the surgery, and a rash near her port (I'm guessing an allergic reaction to something used in the surgery). She had trouble sleeping that night, probably from the steroids, but felt pretty good the next day aside from a bit of nausea. Days 3 & 4 were far worse. She describes it as feeling really, really hungover: headache, nausea, stuffy head feeling, etc. Oh, and extreme fatigue. She only got out of bed to go to the bathroom and to move to the couch. Today she feels a tiny bit better. She was able to go out on an short errand but that completely wore her out and she is back on the couch. I'm hoping these are still effects from the Adriamycin and not from the Cytoxan that she takes very morning. Even so, at this rate, with weekly treatments, it seems like there will be very few "good" days. Ugh.

I'm holding up really well so far. It's hard to see her so out of it and I worry about the toll of 12 weeks of this, but I'm trying to stay in the moment. Doing the bulk of the household chores and taking care of the patient is time-consuming and tiring, but I am managing to do things for myself as well. I went to a triathlon clinic for several hours on Saturday morning and went out for a long run yesterday. These are the things that will keep me sane. I don't feel inclined as this point to explore support groups, but I'm interested in others' experiences. RJ, have you gone to a meeting yet?

Linda, how is Kerri doing and how are you doing? Sounds like a very emotional day and I hope things are going well post-chemo.