BC Husbands and Boyfriends Hangout

Kgrennan,

Glad to help.  How are you doing?  Keep those positive vibes going your way.  hopefully the holiday season will be a pleasant distraction.  I know last year my wife was going through expansions from October-December and then had surgery 2 weeks before Christmas and still insisted on hosting the holidays at our house.  I don't know how we did it, but we did.

Hopefully you are well.

Route53

http://route53.wordpress.com

Wow..skydiving?!  That IS impressive.  We hosted, but everyone brought things over and made sure my wife did not exhaust herself.  She was still stiff at that time just two weeks after her exchange surgery.

We look back now and say, "Wow!"  We took the kids to Disney just two months later and went to Vegas for Valentines to see Elton John in concert, danced all night in a fancy night club and just celebrated life.

My wife said that checking that bucket list and filling it with more items helped to add some verve to her life and probably helped her to heal and give her something to look forward to rather than to just "check off".

As a husband we know our wives better than anyone.  All I try and do is keep her focused on "living" and not as a normal person but as someone who respects life for everything and every minute that she receives.

I've been so busy researching and posting on Diagnosis and Surgery forums that I had not got to this one yet. 

My wife is registered here but seldom posts.... diagnosed 11/30 with IDC grade 2, ER/PR + and HER2-, 2cm multi-focal.  53 years old. No known history of cancer in family though she only knows one side as her father disappeared very early.

After nearly getting butchered to death by a general surgeon doing a double excisional biopsy, we moved to REAL specialists in New Orleans.  Surgery, skin sparring with immediate implant recon is planned for 12/28.

We live about 4 hours away from NOLA and last week made two trips there and back same day.  We have another one coming before surgery for pre-op.  My 80 year old parents are scheduled to visit for Christmas from quite a distance.  We haven't seen them in a while.  Their visits are enjoyed but my wife strives so hard to be perfect for them and places undue stress upon herself beforehand.  I got her on Xanax.....I don't care what happens as long as she stays around.

Me, I'm about to drink heavily and threatened to take up smoking......I'm scared, stressed and raw.  Who has been there?  What do you do?

hello gentlemen,

i cannot believe this thread came up today. i'm going to post the letter i just wrote my fiance and hope it can offer some comfort. not sure if it will. i sure hope it does. you men go through SO much and it's SUCH a powerless feeling to have and to watch us. i feel so badly but while we're going through it all, you all take a back seat because we're too busy trying to be strong and feel as normal as we can while being cut apart, poisened and burnt. i finish rads on Thursday and will do the exchange shortly.

i hope this helps: To Barry,

I've wanted to say a lot to you lately as everything is winding down now but I couldn't find the moment.

The moment is here now.

Our lives were torn apart Barry in the last year. Torn apart. We had to tap into a lot of different emotions to handle what the past year was for us and I honestly believe there's more to be had for a little while in the future.

Barry, no one else but you and I know (and I mean REALLY know) how difficult this summer was for us while going through chemo.

You saw me cry. You knew the hours I wasn't sleeping. You saw me at my wits' end in the middle of the night crying because I couldn't sleep. You hear me moan and groan while I sleep. You saw the pain. You walked me to the bathroom because I couldn't get there myself. You held me as we both cried scared to death as to what was going to happen. You then quietly shut the door and left the room while I continued to cry and go through my own hell and knew I had to go through it by myself. You saw the bald, no eye brows, no eye lashes. You saw the not feeling well. You saw the fear. There was no escape for you; you saw it all day after day, night after night.

And all you could do was sit there and watch it. There wasn't anything anyone could do for me. and to have that feeling along with watching someone you love go through the above is such a powerless, hopeless feeling to have for one year.

But I have to tell you that the year is over now Barry. There can and will be more emotions of fear and dread now that I'm done with all the treatments but we can still start to rebuild, start to move past 2009.

Look towards the future. Be happy about the future. Be happy about every day that we're not living with cancer in our faces.

Look towards the wedding, the honey moon, making our house into everything we want it to be.

You also have to remember Barry that I skipped out on you for a year. As a "couple," as a unit, I wasn't present for that year...I couldn't be. So for you going through everything as I mentioned above, you were also pretty much doing it alone because I couldn't help you through it like a team does, like a couple does, like a unit does.

You were alone. You were by yourself.

I couldn't be in full control of the house or the bills. I did the best I could but it wasn't what you're used to.

But I'm back now Barr and you have to know that and let's move forward. You can be upset about the past year but not for too long because we have more laughing and loving to do.

I am so, so sorry you had to go through this and so, so sorry I wasn't there to carry you through it but we need to pull together now and be side by side again.

I'm on your side...always was and always will be. I just had to fight a battle for a little while but it's about you and me now.

Wow.  This board exploded (relatively speaking) over the past month.

My wife just got her scans back.  Eight treatments of chemo did little to reduce the size of her tumor.  We were happy to hear though that her lymph node, opposite breast and the rest of her body came up clean, no mets.

Because of the tumor size, sugery is postponed.  Her oncologist is recommending radiation.  We've been concerned about having radiation treatments before sugery, but more and more it seems like the correct course of action.  

Not wanting to leave any stone unturned, my wife went down to MD Anderson this week for a second opinion.  MD Anderson is the place to be for Inflammatory Breast Cancer which is what my wife has.

 Sparky, am sorry to hear your wife had a bad experience with a mastectomy.  My wife will be having a double mastectomy hopefully soon.  I hope we can avoid a similar experience.  I'm curious how recovery went.  How much was she able to do?  I'm just curious how rough it will be on her.

Kgrennan - Sorry to hear about your wife's tumor not shrinking.  It's always tough when the first approach doesn't work.  The one thing this disease teaches all of us is fortitude and attitude. Yes, all about the 'tudes.  We're with you and your wife.  Keep it going.  MD Anderson is great from what I hear.  Good luck.

Sparkyhammer - Last year at this time I was right here with you.  My wife was having her final reconstruction right before Christmas.  It was done so we could get family to help and not have to worry about getting the kids back and forth to school.  The surgery went okay.  We had two subsequent surgeries in 2009 to make some "fine tuning" adjustments after some "settling".

While my wife isn't quite the Southern belle, she is always worried about thether scarring is showing or if anything else looks right. Even with the best of rugeries you will have to help balance honesty with reality, but I can tell you my wife is very very happy.  While in some ways she still worried, she's also more than back to normal and for that I am very grateful.  Remember where you are today, because you will hopefully be at a total 180 from that a year from now.

It just pisses me off that many husbands react like it is not their problem... Sad story.

Sparky, when you get to the bottom, we're all selfish here. In one way or another.

Good luck to you and your wife and I wish she'll finally get the care she deserves!

Take care,

Yan

Hi all, 

This is my first time posting anything anywhere, but I figured this would be the best place to try it out.  My girlfriend and I are both 23 and have been together for the past three years.  We have been living together for almost a year now, but I have just recently taken a research position about an hour and a half away from our place.  About two weeks before Christmas we found out she had breast cancer.  She has no family history of it, she is perfectly healthy and had no genetic precursors.  Needless to say, it was a stunner.  What was supposed to be a routine surgery to remove the tumor and put our minds to rest, actually yielded worse results.  

The reason why I'm writing is she is scheduled for her first chemo treatment this Friday.  I don't have any experience with anyone, let alone a loved one, that has had any form of cancer. She is a nurse and has an incredible grasp and worry free attitude on the whole thing, and puts up a great front, but I know that can only last for so long.  

I am looking for a heads up on what's to come and what my main focus should be as her partner through her treatment.  I have the ability to be with her during treatment days and plan to be, but through all your experience do you think that is helpful or just crowding?  The main thing that is dragging her down is losing her hair, any words of wisdom on helping her through that? 

If I am butting in, give me a heads up on where I might be better suited to go.....

-K 

I'm new to this board. I found the link from the Caregivers Group at komen.org. I saw your note about the board being inactive for awhile. I hope this is temporary, as I am in need a place to talk it out.

My wife is a 10+ year survivor. Yet, she's been hit with a recurrence every other year since then. I really took your quote to heart, "It all seems like a bad nightmare I can't seem to wake up from." Somehow, that is how it feels. She's just had another recurrence - and i'm having trouble being supportive. I looked up my symptoms online and they all point to "shellshock". 

So i take heart in reading your story and everyone's. Even the one's way back in 05. I hope to find, if not courage, some clarity here.

 Thanks & God be with you too.

My wife was dx 9/09 with IBC, Stage IV mets to bone.  KGrennan, I've actually corresponded with your wife at ibcsupport.org - yall's decision to come to MDA at Christmas was a wise one, IMHO.

My wife has been very courageous in dealing with all this so far.  We have essentially decided to take on what we are best suited for - me, researching, knowledge, best treatment options; her, fighting with all her might against this awful disease, just maintaining day-to-day activities (she is still working as a middle school choir teacher while halfway thru 4 cycles of FAC chemo).

What it boils down to is that every aspect of Elgin, Incorporated (our family) has to be managed by three people - me, myself, and I.  My wife does not have the energy or wherewithall to keep up with housework or kid activities when she gets home from work - she is exhausted.  I have to make sure the house is cleaned, kids are chauffeured as needed, groceries are bought, yardwork is done, kids homework is taken care of, and that we have enough money to cover all our expenses, including working extra jobs to make that happen.

The irony of it is that, now more than ever, it is important to spend time with her - every minute is precious - but I have so little time because of her illness, to spend with her!  My daughter, bless her 16-year old heart, really makes an effort to at least be in the room with her mother, whether actively talking or just doing homework in the same room.

A blessing of this whole experience, however, has been the showering of gifts, food, and concern on us by both our circles of friends and family.  We have never felt so loved or cared for.  An old friend of mine from our church is organizing a fundraiser; Lee's principal is talking to the superintendent about a districtwide fundraiser.  Which leads me to feeling guilty for receiving all this; there are certainly families out there dealing with similar situations that are worse off than we are.  While we are certainly not rich, we are able to pay our basic bills.  The medical bills certainly are starting to drag, but are not crippling - yet.  But who knows what terrors lie in wait with this dread disease?

Hamcan, I'm young and new at this.  I can't imagine I have much wisdom to provide someone who's dealt with this disease for 10+ years.  I hope I get there though.  As I face each struggle, I tell myself that this is life for us now.  I can expect the next scare, another reoccurance, more treatments, and surgeries.  It's all part of the life I have with my wife.  The alternative to this life style is even worse.  And leaving isn't even an option to me.  I've never been one to run away from problems and I'm not going to start now.  My family needs me and I will be there.  My sacrafice is considerably smaller than my wifes. 

My wife may not agree with me, but I've found having an outlet helps.  Go to the gym.  Play some hoops or grab some beers with the guys.  Get a weekly card game together.  Find someway to escape the madness for a while.  It usually helps to refresh me a little.

Please keep posting.  I'd love to keep this board active.

My wife was diagnosed with Inflammatory Breast Cancer (IBC) in August of last year, just after we celebrated our 9th anniversary.  She was breast feeding our now 1 year old daughter.  She began developing a lump in the breast but thought it was mastitis.  She's a doctor herself and has had mastitis before.  When it didn't go away she went to her OBGYN who also diagnosed it as mastitis and gave her some antibiotics.  When that didn't work they sent her in for a MRI which was read as mastitis.  It wasn't until about 3 months later that my wife wrote herself a script for a breast exam with a breast surgeon that it was discovered.  I remember that call.  We kick ourselves for missing it.  But numerous other experts did as well.   After reading about IBC, this is exactly what happens.  If you don't know about IBC, it's bad.  Normal breast cancer is bad but has a 87% 5-year survival rate.  IBC is about 40%.  And my wife is most likely less than that already being stage IV.  All that said, I don't pay attention to statistics.

We did get some good news this week.  After receiving some questionable treatment recommendations from our local oncologist, my wife enrolled herself at MD Anderson which is the best IBC clinic in the nation.   They put her on a new mix of chemo drugs which has worked.  After 12 weeks she now has no detectible signs of cancer in her body.  As you and I know all too well, it's there, just not detectible.  But at least we can proceed with surgery and finally remove the breast.  She's going to have a double mastectomy.  The double part is option but with a 12% chance of reoccurance and the existing potential of a second tumor in the other breast, we want to be safe rather than sorry.

It sounds like you have a very strong wife and motivation (2 kids) to fight this disease with everything you got.  We are the same, 2 kids with a reason to fight.  I hate to watch my wife suffer with the side effects of these horrible yet great drugs.  But it's what needs to be done. 

Thanks for the advice sparky. It seems that this posting area has two themes. Breast cancer that's stayed local, and recurrence via traveling to other parts of the body. I don't mean to oversimplify just trying to get an idea of what's going on. You're a lucky guy to have found someone to talk about all this with.

As K pointed out, this post hasn't recieved much activity, so your post is greatly appreciated. To all, I've started a similar post on the komen.org site just to see if it might take off over there. Here is the link.

http://apps.komen.org/forums/tm.aspx?m=307778

 Keep up the good work guys!

Sean,

It was more obvious I was Lori's husband a few weeks ago before I changed my log in.  You seem right in line with me as far as where we stand with our wives.  Lori finished her double mastectomy a week and a half ago.  We are actually in the process of moving our family down to MDA for a month for her to begin radiation twice a day.  The pathology results were about as good as we could hope for, no cancer in left breast, lymph nodes or skin, clean margins and they were able to remove the 7 cm tumor from her right breast.  

What's funny was that was a good day as far as our news about treatment was concerned.  I allowed myself a few minutes to rejoice.  I then stopped myself to remember this is only the beginning and that things are still far from normal.  That actually made me feel worse.  I think the stress is getting to me, work, extra help around the house, constantly adjusting my schedule, trying to have fun myself without feeling guilty.  It's tough.

Hey, if you're up for it, maybe we can grab a beer when we get down to MDA. 

Take care and best of luck to you, your wife and kids.

Kevin