re-posted, new member, new story

rayne_23

My name is Rayne, I'm a professional business woman in her twenties, and I live near Toronto Ontario.

Everyone's got a story, and we all want to tell our stories; and not only that, but sometimes, we just need someone to listen. I feel like I have a lot in common with the people here: although I don't have breast cancer, someone I love does.

The difference, between my story and others, is the fact that the person I stand beside as she takes this journey is my wife.

Jordana and I have been together for a few years, we've made a happy home by the lake where we retreat to after the workday ends. Being a stable lesbian couple has never been difficult, and we're respected and loved by our families, friends, work peers and neighbors. I feel blessed to be so madly in love with by best friend. If there's anyone I run to with happy news or upsetting feelings, it's her. She's my world, she's my home, and she's everything I'd dreamed of finding in a partner. And all of a sudden, she's been told she's "sick".

I feel like maybe I could deal with it differently if an aunt or my mother or friend possessed the same ‘darkness' which Melissa Etheridge herself speaks of. I didn't say it would be easier, but I wouldn't question who I could run to for support. I'd still have her by my side. I've always had her right there with me: so far this year, she's walked with me through two emotional deaths which were both tragic, and sudden. I've never once taken it for granted. Jordana has always been too important to me for me to ever forget to let her know what she means to me. I can live without many things, but not her.

I've always prayed for others whom have stood in the same position as my beloved Jordana, I wish them all successful treatments and I pray for their families. I hope for strength so that they can get through tough times, I pray for happy news and to see longtime patients smile.

But, i'd never thought i'd meet anyone else who walks alongside her wife in the shadow of an illness which claims so many women each year. i see here that i've found others, that understand the same thing...(after searcing over this commnity and finding the other topics boards) .

the common ground I find with the other users (mothers, daughters, sisters and friends) of this web board will lighten my spirit.

Thank you, all, for simply listening.

I wrote this just the other day, for her/to her. i write when i think, and sure-enough, i was full of thought.

 ((Start 1:46pm Wednesday July 9<sup>th 2008))I Speak:To those whom come to a place
Where the road ahead veers two ways
Where they wait and watch factors unite
To form their future days.
When all the things they though they knew,
Never willed themselves real...
And all the things that seemed so perfect
Were never really true.

My Message is:Don't ever underestimate
The simple peaceful plan
That if all you ever really do
Is the best you can,
You'll overlook questions
Like when or why and will the pain last,
Simply live each day
One by one
And let the future become the past.Then you'll see that:With friends and family as your army,
Armored heart and soul with hope and luck
You'll have all you need to conquer the darkness
With a few stitches, a nip and a tuck.
You'll be brave, you'll be true,
And finally come to understand
That the darkness never really had
Anything on you.-Rayne ((Finish: 2:03pm Wednesday July 9 2008))</sup>

NoH8

Rayne, I'm so sorry for what you and Jordana are going through. I always said i think it's much easier to be the one with cancer than watching a loved one deal with it. At least when I had cancer I felt like I was doing something active to combat the disease while I watched my close (heterosexual) friend look on helplessly. I wasn't in a relationship at the time.

I know there have been wives on here from time to time and they talked about their wives struggles so I hope they will respond to your post.

Where is Jordana in the treatment process?

rayne_23

Its' been a whirlwind of activity.

About four weeks ago **enter graphic content here** and I know her well, all of her, so this lump was definitely new to me.

she went to the doctor, which took her a week to schedule. From that point on, every few days there was something, a new appointment, another test. I came home one day to 5 (five) messages on my phone from various doctors claiming to be following Jordana's case.

She had a mammogram and ultrasound on Tuesday and the results were ready on Wednesday.
I explained to her that it's unheard of to be whisked through the health system that fast it they weren't already concerned about something potentially serious.

she was diagnosed (I don't know all the proper terms) early this week and she's got several more appointments before and after next Monday when she goes in for a lumpectomy. 

she wants to play in our all-lesbain baseball league the following weekend. i have my doubts she'll be recovered enough to swing a bat...i might need her moms' reinforcements to convince her not to play that week.

Jordana is very physically athletic and a proud soul. She got defensive when I told her I wouldn't let her play competitive sports when her stitches haven't even healed.  oy.

 -Rayne

flyrzfan

Rayne ~ First let me say, you can't keep a girl from her ball game. You can try, but in the end she's going to play if she is able.

That being said, I'm glad you found the website. I don't know what it's like to be IN your shoes but I do know what it's like to have my partner be my best friend, biggest advocate, and source of strenght through all of this. Those of us who have someone to wipe the tears, pick up the slack and attempt to be our good judgement and common sense are extremely lucky. I don't know what I would have done in the 6 weeks post surgery if I did not have my wife taking care of me. There was a side effect of surgery that caused a colapsed nerve in my arm, the medications for which left me so incapacitated I could not care for myself. I remember almost nothing of this part of my recovery. Looking back on it, I don't know how she managed everything that was going on.

It is a frightening journey with many ups and downs, know that sometimes the best you can do is just be there. Sometimes there are no answers, explanations or anything else you can do ~ knowing you are there will be enough.

We looked for support groups in our area (D.C.) for my partner but found none active specifically for lesbians ~ if you'd be interested in connecting with my partner to share her experience in helping me through this, PM me and I will gladly put the two of you in touch via email. She's had quite the ordeal with me and has a wonderful, big heart ~ I know she'd be happy to offer any advice, thoughts or shoulder she could.

Bonnie

rayne_23

That really helps Bonnie,

Sweetheart and I are a good match, despite the small fact there are several years between us. I work in the corporate word and she takes our dog to work with her since she works for a company that makes specialty harnesses.
We are very different, but I think that's what makes our relationship work.

(I do have a point)

She takes care of the things that need taken care of. She's a planner. Jordana prides herself that our home is tidy and bills are paid on time. I make sure the Truck is full of gas and that there is plenty of money in our account to pay said bills. In a nutshell, Jordana schedules things and makes plans and I finance them. I appreciate everything she does for me and for us, and I'd do anything to be able to repay the care and tenderness she puts forth in our relationship every day.

   "So this means you'll have to cut the grass next week" she said to me, conscious of the fact I can't even start the darn machine.
   "Anythingsweetheart." I replied without thinking. Which I do mean genuinely, the more I can take off her plate of tasks the better I feel.
   "And make sure laundry is done" she adds.

I never do laundry, which sounds bad but if you only knew how many shirts of hers I'd inadvertently shrunk... So its' like this: I want nothing more than to have her do nothing and be as stress free as possible...So far, I think we're on the right path. I know some women diagnosed need more attention; others don't want to be treated any differently. Both reasonable requests, but both on opposite ends of an abstract spectrum.
   "As long as you keep communicating what you need or what you don't need." I'd begun explaining to her on our way back from the hospital.
   "If you don't feel like being social, or want to take some time off work, just let me know, I'll take care of it"
Although it's new for me, it's new for her too, so it's ok she doesn't know what to expect. Well her main concerns are recovery times (striving of course to be back on the baseball field) but that too I believe differs from one patient to the other.

Jordana is skin muscle and bone, (which made me question the lump in the first place) and so a question I do have is what are some possible post-op eating habits? Or has anyone lost any weight while going through treatment? I'm worried about her not being able to eat and I'm worried about her becoming weak.

-Rayne

flyrzfan

i had initially lost weight, but that was due to post-surgery complications and my first tx of AC going badly. once they got me on the proper meds for nausea, i put some of the weight back on. i am actually healthier now then i was pre-diagnosis. in part, because i finally quit smoking. i know, the irony of it. it is possible to maintain healthy nutrition while treating...and there are some useful threads here that can help you with that under that task heading...being in shape before hand can only strenghten her position going into this. has she been on the website as well?

rayne_23

not yet, but i'll forward the link to her and encourage to join herself.
maybe if i can set her up with my laptop it'll be easier to get her to take it easy.

ILVBONNIE

Rayne,

I wanted to introduce myself.  I am Bonnie's wife and wanted to offer you my advice/perspective in going through this.  I am thrilled and humbled to be able to lend a hand, ear, shoulder or email if you so desire.  I know firsthand the horror, fear and grief you both are going through.  But rest assured, you will get through.  Your postings describing your relationship are eerily similar to Bonnie and I.  With that being said, you both will get through this even closer than ever, if you can believe that!

As far as getting through.  I can only share with you my own personal experiences as everyone is different.  First and foremost, the love of your life is facing one of the most challenging events she has probably experienced at this stage in her life.  Embrace her and be her rock eventhough this is just as devastating to you.  Look at this as just a bump in the road and this too shall pass because breast cancer is a curable disease.  I know that may sound crazy at first and it is.   You will find that you have to discuss things that are unfathomable at our age.  Frankly speaking, medical bills (bankruptcy) disability, and even death.  As difficult as preparing is, it's a good idea.  We immediately contacted a lawyer to set up power of attorney since we, as a lesbian couple, don't have the protection we should. 

As your wife goes through this challenge all you can do is be there and support her as I know you will if you can.  I was fortunate because I had the luxury of taking my wife to all of her appointments in the beginning.  It helped me meeting the doctors and realizing that she was in good hands.  Research all her options carefully.

This is just the beginning for you girls and I don't want to bombard you with advice at this stage of the game.  I would love to go more into depth about my role as a caregiver as the two of you go through this journey together.  Just believe that you can and will get past this. 

Sincerely,

Kelly

NinjaD

I have been watching this forum since my diagnosis on 6/3. When I found this post this morning I decided to stop lurking and join up. My partner and I have been together for 26 years and have been through several emotional deaths in our families, however receiving this diagnosis was a huge kick in the gut for us. Even though the docs have told us that my prognosis is good, you still have those negative thoughts that creep into your brain. I can tell you that just having my partner by my side as my support makes this journey so much easier. She has met all my doctors and has done hours of research on the internet. We too are from the DC area (Prince William County, VA) and was surprised not to find a lesbian support group.

flyrzfan

Welcome NinjaD...glad you stopped lurking! I'm sorry you had to come here, it's a sucky thing for everyone isn't it??? I was pretty amazed when I found these boards that there didn't seem to be any active postings from lesbians - I was even more suprised when I contacted the mautner project and they also had nothing active. WTH ? At least we aren't alone and have partners to be there for us - but what about those that don't? Where are you now in the process? I am doing my last round of AC next week, then I start 12 rounds of TH...I was diagnosed back in March and as Kelly said above, it's been one heck of a journey so far.

NoH8

Rayne, I'm glad you found others in your same situation.

Flyrzfan, are you from the philly area too?

flyrzfan

Originally yes, I grew up in Bensalem Pa and then in Northeast Philly...now I live in Rockville Maryland. Where are you?

rayne_23

i feel lucky i guess that Jordana and I are here in Canada, i really have no idea what US lesbians go through.
My partner is, my partner. The company i work for recognizes her as spouse (i NEVER even had to provide proof of anything) and she's been on my medical insurance since day 1.

when I explained to my bosses why I would be absent, (to be alongside her for appointment and surgery) they had each taken their turns that day to invite me into their office and express that they truly hope everything turns out positive for Jordana and to let them know if I/we needed anything from the company.  

hearing that it may not be so easy and simple for others makes me appreciate it more.

flyrzfan

Rayne - that is fantastic, we're not quite that advanced down here - yet, but Kelly and I are fortunate to work where we received a lot of support. Her coworkers donated the majority of the leave I have used, the brought food, sent flowers, did grocery shopping, sent gift cards -you name it. They are amazing. They even came and brought lunch for us and stayed to visit one day. For about 4 weeks after my surgery I was completely useless so having them all chip in like that was a huge help. One thing I can offer advice on, if you need help getting something done don't hesitate to pick up the phone and ask someone to do it. It will take stress off your plate and for the most part people will help in anyway they can, you just have to point them in the direction of what you need. Don't try to do everything on your own. My case was a little drastic because of the nerve damage but still, with all the appointments, surgery, treament plans etc. you have going on in the begining it's easy to get overwhelmed with your day to day life. We'll all be saying prayers that Jordana's pathology report comes back with good news (early and non-aggressive with minimal treatments necessary) and we'll help in any way we can to answer questions. I know from other ladies on the boards that you have a completely different medical system in Canada, but the language is the same for the most part. I know it seems impossible to believe right now, but the first 3 months or so are the worst part. All the running around and information gathering is just crazy. Once you get the lumpectomy, the pathology report and treatment plan you'll settle down into a routine and this just becomes another part of your day to day. Go to work, get the groceries, do the laundry, get your chemo, ride your bike. Somehow, like millions of others before us, we just fit it into our everyday living. Amy (Obama4presi) went through all of this and had to deal with her own crisis when she had a house fire...speaking of which -

Amy - I never saw anything posted about you finding your kitties? Did they come back?

Anyway, my point is...it does get better, and lining up helpers now will make it less stressful for you in the long run. Since there is clearly only a smidgen of the population here that are lesbians...the one's you've got here on the post will help you in anyway we can. NinjaD and her partner have 26 years under their belts - I'm sure they will have lots to offer in way of support as well.

In case any (Amy I know you have) of you have not found the boards that will somehow make you laugh even on your worst day...I can recommed the "Laughter the best medicine..." and the "I bitch, I moan...." threads...there are some hilarious, witty, tender hearted, loveable women on those threads. I encourage you to check them out - it will help.

Bonnie

rayne_23

Although Taxes are quite different in the US, I can't say that I complain about our higher taxes here in Canada, after all, our healthcare system is pretty good.

I've recently sent sweetheart an e-mail with the link to this place, so perhaps she will pop by.
there is Tons of information here, and now that I think of it, her doctor didn't give us technical terms to her diagnosis, just that "yeah, it is cancer"

We're still in limbo waiting for further test results performed after her surgery on Monday. Hopefully we'll have them by Thursday or Friday.

flyrzfan

may I suggest you have the doctor fax over the pathology report...it will tell you at least a) they type of cancer (IDC, LDCS, etc) the grade of the tumor (1,2,3) the size in cm...etc...and it should also tell you if it's hormone positive (ER+, PR+) negative (ER-,PR-) and the HER status (+,-) this is a good starting point to research your options for when you find out the staging of it (which comes with the lumpectomy). Just a thought and hopefully you'll have more to go on going into the weekend...we lost AC in our building today so I am going shortly...hope you all have a great weekend...

NinjaD

flyrzfan- Thanks for the welcome. I had an excisional biopsy the end of May (several docs thought my mass was a benign fibroadenoma). When pathology came back, 2.2cm, Stage 2, DCIS and colloid carcinoma, ER/PR+, HER/2- and not clear margins. Had my lumpectomy and SNB on 6/17. Path results clear margins and 0/3 nodes. They decided to send my tissue for an Oncotype test since the onc. was 50/50 if I needed chemo. They told me it would take 3 weeks to get the results. Radiation was a given with my choice for a lumpectomy. I just wanted to get something started and I didn't want to play the waiting game again for 3 more weeks. So my med onc and rad onc had a conference call with us. We discussed going ahead with radiation and then doing the chemo after if it was deeded necessary. I know that this doesn't follow the typical protocol, but I did find a study somewhere on the web that showed that there was no significant risk by doing treatment in this order. So.........to answer your question I start my first radiation treatment on Monday, which will consist of 30 treatments with the last 8 being boosts. Hopefully my oncotype results will be in by the 18th of this month. 

Rayne- You are very fortunate to be recognized as a couple. As of this year my company finally offered medical insurance for domestic partners, which was surprising since Virginia is such a backwards state. I can say though that I am completely open at work and all my coworkers have been extremely supportive to both of us.

I can tell you that waiting for the path reults has been the worse part so far. Once you get the path report you will know more and figure out the best way to kick it in it's ass. My partner and I are taking this one day at a time and as long as we have each other we will make it through this. Hang in there.   

Anonymous

Welcome to Rayne and Kelly...glad you found us!

lv2cmp

A big welcome to Rayne and Kelly. 

Amy

rayne_23

Thanks everyone!

your kindness is greatly appreciated. i've found the web boards helpful already.  

i'm actually here at at sweethearts work, i'm hoping she'll be there joining as soon as she has time to spare. we'll see.

NoH8

Bonnie I brought my last cat to the hotel last week (yay). I have a thread on the moving beyond thread capped UPDATE, where I've been updating folks. I'm going to visit the apartment this morning  so I'll have another update today or tomorrow. I'm in conshohocken.

Back to your thread rayne, not trying to hijack it.

flyrzfan

So glad to hear it...didn't know you were updating on another thread!

Hope everyone had a good weekend...I am in class most of this week and then I do my final round of AC (double YAY) on Thursday so I may not be on much but Kelly will be checking in I am sure...Rayne, let us know how the lumpectomy goes...

flyrzfan

test post

rayne_23

Alright, I'm back,

Lumpectomy went well, they took two lymph nodes, and we'll get the results in about a week.

Sweetheart is doing well, I automatically thought she'd be sleepy all day, but she's the type of girl that we (her visiting family and myself) will have to force to ‘stay put'

Right now she's swollen and sore, but I don't think it's anything we weren't expecting. She's going to stay off work for a while, but I know if she had HER way, she'd be back by tomorrow. We'll see about that m'lady.

flyrzfan

So glad to hear things went well ~ please tell your girl we're thinking of her and we hope she has a speedy recovery!!

flyrzfan

Hi Rayne...just checking in to see how you guys are making out? I hope things are going well and you got the answers from the biopsy that we all hope for. Thinking of you both...

AnnNYC

Bumping up.

NoH8

Any word yet? I assume no news is good  news, or you'd have checked back right away. I hope that's the case.

rayne_23

eeep, yes, i'm here,

things have mellowed out and now sweetheart is living the life of a cancer patient: somethings have changed, some have not.
she's actually going to the doctor tomorrow (her doctor works Saturdays...I love it) to have her incision inspected.

I know this might sound gross, but she's been leaking fluid. She woke up last night drenched....we even had to change the sheets.

I explained to her that for some that have had several lymph nodes removed...their lymphatic system is all outta whack and so this natural fluid that's in the body has nowhere to go. Some have to have drainage tubes inserted and maintained until the lymphatic system gets back to being functional.

Jordana had two lymph nodes removed. (both tested negative for Cancer, which puts her at stage one...yay for that)
there's this section of her incision that is a definite hole. Looks like someone stabbed her with a ball point pen. And this is where the thin clear discharge comes from.

ok, sorry for the graphicness, she's doing ok, we're still doing research about natural options and homeopathic alternatives.
she sees her onco in two weeks and two weeks later she meets her radiologist.
Jordana isn't sure if she's going to go through with the radiation, we'll see.

Last week, we'd gone to visit my parents, whom have been worried and concerned. (my parents never really liked the fact I'm gay, they HATED my past partners and now they don't even seem to mind the age difference between jordy and I)

"I can't believe it took me having cancer to finally get your mother to come ‘round!" sweetheart said while laughing.  

That's about all for now.
thank you everyone, for asking, t'is very sweet of you all.

-Rayne.

NoH8

I'm glad she's having her incision inspected. I didn't have anything like that, but I did have drains for several days after my mastectomy. They were really uncomfortable and I had to measure the liquid before I emptied it and threw it away. After bc nothing sounds gross.

I'm glad your parents have come around and are being supportive.

rayne_23

Yup, i believe we're going to make an appearance at my family's cottage this week, it's the first time a partner of mine has been openly and graciously invited.

We saw her clinic doctor today, whom didn't really give us any answers, but, we've got some new dressing tactics, so hopefully we'll be able to keep control of the fluid.

"you dont mind this?" sweetheart asked, as i condenced my focus on bandaging her up.

"No, surprisingly, i'm only grossed out if it's myself"

i wonder if others are similar...i'd run across the room to the rescue of a friend whom cut her hand real bad...held it steady and managed to stop the bleeding, completely calm and consentrated.
BUT...i so much as slice my own finger...i get so light headed i have to sit down.

 Dang, the things we do for love....

(And it's totally worth it!)