Umm, asking for advice/help

[tdinewguy]

Hi there everyone.  



So I'm going to try and keep this breif...

My 35yo wife was diagnosed with ovarian cancer when she was pregnant with our 2nd son - the ultrasound found a huge ovary.  surgery was about a month after she gave birth to our wonderful boy.  She was Stage Ic in april '08 - so we opted for surgery only - no chemo.

We watched her CA125 for the year and it stayed low - for about 6-8 months, then started rising.  We were really hoping and praying to preserve fertility.  But - we felt we needed to do something - so in for surgery 12 mo after the 1st surgery.  complete hysterectomy with the final ovary and cervix in april '09.  The ovary had filled with fluid and was the size of a volleyball...  so she looked pregnant the day I took her in for the operation.

the operation went well, and she was ready to come home after 3.5 days - so that morning I got my things together to pick her up and take her home - but she went to have a bowel movment and got real sick.  Her intestine blew out internally and it took from 9am until 6pm to get her into the OR and clean things up.  That was the most awful 9 hours of our lives - the nurse tried to give her pain meds, but they screwed up and gave her the wrong stuff, so rather than calming her - she began to flop like a fish out of water in pain.  When she went into the OR - she was fully yellow.  She spent a few days in ICU and did recover - they did an iliostomy (SP?)  and she had an open wound heal...  I saw the guts man!

So she healed up from that and we got geared up to start chemo...  So it was going to be the "gold" standard - Carbo and Taxol.  Something in my gut said that Taxol was a bad idea and that we should go for Abraxane, but the oncologist would not allow it... said that insurance would not cover it.  So she gets her pre-meds and they start the first drop of Taxol - boom - reaction - she can't breathe, all red - another really bad experience!

We walk away from that hospital and get hooked up with the Mayo clinic.  They get Taxotere and Carbo.  Better process and we get going with pre-meds and she has a reaction, but not quite as severe as Taxol.  They (mayo) got it under control and were able to give her the Taxotere and carbo.

Side affects?  Well she did not get neulasta or neupogen, and went neutropenic after her 1st dose of carbo/tax.  Hospital again for a week!

They do a dose reduction and add in the neulasta (blood booster shot) and she is able to make it thru the 6 rounds.

Her CA125 dropped down to 8 and once chemo was done Nov '09 - life started getting better.  Her iliostomy was reversed in Jan '10.  Now life was really getting better - no more poop bag to deal with!

So - early menopause - I've got a wife who loves me, but her whole demeanor has changed.  No longer the nice warm person I once knew - now it's like she is on a permanant PMS.  (My wife - if you read this - I love you lots, but I just need to put my honest feelings here...)  Sex drive?  what is a sex drive?  hello?  anyone home?  Ok - so there is no sex drive, and she still trys once in a while - but it HURTS and bad.  Painful going in, painful during and lubes don't help, and painful urination afterwards.  That *****...  it's not like I'm 70 and sex is no big deal...  we are both 35.

Sooooooo, moving right along here - march '10 she has an intestianal blockage that gets her sick enough to puke and head into the ER.  The good news?  the blockage free's itself.  The bad news?  well they found a large spot on the CT scan that they want to biopsy.

....................so we get to the biopsy and they are not sure if it's recurrent ovarian or a new primary cancer of the pancreas.  (The node is on/near/adjacent to the pancreas...)......

Biopsy - it's cancer, but we still aren't sure what kind.

So in for biopsy #2 - the endoscopic type - this one finds it's in a lymph node and it's about the size of a kiwi.

Surgery!!  They got the one large node out, but it was sticking a bit to a few things like the pancreas and stuff nearby.  They also took several other lymph nodes.  They found cancer in some but not all of the other nodes they took.

Chemo!  now we are in the middle of our next chemo regiment.  They (Mayo) sent the tumor to get chemo resistance testing done and apparently the lab that does that closed up shop and we have no results.  So let's spin the dial and pick a chemo.  We have no idea what will work the best, but we do know that you went only 4 months from the end of chemo #1 with a CA125 of 8 to today where your CA125 was elevated and we took out a pretty big mass.  Platinum resistant is what they say...

Doxil? Gemzar? FU5? Avastin? shoot - there are all kinds of options.  no "gold" standard anymore.

So here we are - our relationship is stressed out - largely due to the loss of the closeness and physical intamacy.  Doctors don't have any real concrete direction...

She is getting Gemzar, but it's tough on the blood, so after the 1st weekly dose - she puked her guts out and her blood counts were borderline neutropenic.  This is a weekly chemo, so they dropped the dose 50% and now have added 3 days of neupogen shots.  her blood counts have been OK to keep on track, but how effective is only geting 50% dose?

I know this has been really tough on my wife and I've been there 98.9995% of the time standing strong being there for every appointment and every chemo.  I am also a business owner and have 2 young kids.  I'm pulled in every direction and need to keep the business going and profitable to keep the health insurance to pay for the care!  I want to be a good father for my kids - but lately I've been way too rough and short with them.  I feel bad - today my older son was buggin the snot out of the younger and i slapped his head - I was not abusing my child, but it hurt me to see him hurt.

The way I see it - there are lots of people offering to help my wife or support her, and being a woman there is a lot more touchy feely with other women.  There are virtually no guys that stretch a hand out or offer to support.  I guess they are all too manly.  The rest of our friends are out living life and frankly I see a lot of pettyness - that I was a part of too, until I got woken up to the fragility of life... and the value of it.

There just is not the kind of support out there that I need - or at least I have not found it.  I feel beat down, worn out and need a break.  I also need to be wanted by my bride, but well - the parts that give her the hormones to make her interested are gone.

Please keep me and my family in prayer.

[tdinewguy]

News update -

We are heading in tomorrow AM for a PET scan.  We have already met with the radiologist about going in for IMRT - radiation for the mass around her portal vein.  It's about a 5cm mass and it's causing problems!

Radiation!  Nuke that puppy!!

[Jane39]

Wow, don't know what to say actually.  Just sounds like you guys can't get a break.  I am sorry.  Also sounds like her cancer isn't reacting to the chemo apparently, platinum resistent?.  Was her orignal surgeries done by a gyn/oncologist?  I mean, I re-read your original post and you were at the Mayo Clinic so you should of had some pretty top notch people, but it sounds like it was some pretty crummy surgeries or just some real bad luck.
What are her doctors saying at this point?  Do you two like your physician team?

Again I wish there were some magic words, there aren't.  Please don't get discouraged.  Your wife needs to have every ounce of energy to fight this disease.  And I know this is so very hard on you.  People use to tell me, "God doesn't give you anything you can't handle"~~B.S. there were times I felt like if one more friggin this went wrong in my life I would jump off a bridge.  So frustration and anger are a given.  Just don't lose the desire to fight.  I wish I had something more fantastic to say, sorry.  Jane

[tdinewguy]

So my wife has spent the last few days in the ER.  She has been having a lot of flank (side) pain.  It's near her iloistomy reconnect site, but pressure on the site does not cause additional pain.

If the DR presses up near the pancreas it does transmit the pain.

There were 2 CT scans and an MRI done.  No direct cause for the pain found...  But they did see the tumor mass near the pancreas has grown.  It was about 2cm back in April/may and now it's 5cm.  The radiologist report states there may be neucrotic tissue at the tumor site...?

They also found a 1cm lymph node tumor... And made mention of a small spot on the liver?

So the 5cm mass is starting to constrict her main artery, as it's adhered to it...

What now?  Anyone have any words of wisdom??

[marie3B]

I have contacted a friend of mine from this forum. He has not been on in a while, but I asked him to come back. I think this man can offer you alot of support through this.  He has always been very helpful and encouraging to  me.  Hopefully he will get my message and return.  Marie

[shewrites]

I'm so sorry that your wife and family are going through this.  It's a tough place to be in.  Many of your friends and acquaintances don't know how to respond or help, so you're probably going to have to tell people what you need in order to get it.  

Please check with Mayo, your local hospitals, the American Cancer Society, etc., to see what services -- hopefully including support groups -- they offer for cancer victims and caregivers.  Even if you find a support group of caregivers that is mostly older men and women, you'll find folks who understand you and will give you a chance to vent.  If you have a church, ask for counseling referrals and prayers there as well.  There's evidence that people who know they are being prayed for do better  -- and some evidence that people do better even if they don't know they're being prayed for!!!  

I hope that some of the men who are on this forum will get in touch with you as well.  

[marie3B]

Have a great time on the camping trip.  Things like that do put cancer on the back burner a while.  Marie

[tdinewguy]

Thank you everyone for your caring replies.  I do very much appreciate it.

As for her - she is actually doing pretty good.  The Gemzar is tough on her and she has had to get a 50% dose reduction, and is on 3 days of neupogen following her weekly gemzar...

so it's 3 weeks on and 1 week off...  next week is the off week!  YAY!

So part of the problems with us and the physical intimacy was my "bad" behavior of taking care of things myself, which I have stopped, but she is still fuming over it.  (nothing like an affair or anything!!)

we are headed camping this weekend with friends - we have a 40' RV, so it is pretty plush camping.  I'm looking forward to just relaxing and unwinding.

I have been looking for some guy friends to connect with - but it's unfortunate that 99% of them won't get it - what I'm going thru.  It's kind of like when we were first married - foot loose and free... then kids come along.  Well your friends without kids are still footloose and free - and us with kids - well it's just different!

With cancer - it's much like that but only 100x more different.

I like how it was said - I see the facebook posts all the time about losing an ipod or gettin stuck in traffic or missing the sale on that fancy new purse.... whatever people!  Get a grip!!!

.... thanks every1!!!...

[marie3B]

Yes, unfortunately our husbands suffer as much or more than we do.  My husband for 3 years now has worked 2 jobs he hates to support us since I can no longer work.  When he gets home or has a rare day off he has to do all the things around here I am no longer able to do.  He has trouble getting to sleep.  He is a zombie much of the time. He does not remember to eat alot of times. At times he is grouchy to say the least. I am thankful he puts up with all this hell.  I could not make it without his help.

I am sorry you and your family had to fall into this nightmare.  I hope her treatment goes well and you can all have some relief.  Marie

[Jane39]

First of all, I am so terribly sorry that your family is stuck in this literal nightmare, and bluntly this is what it is, a nightmare.  One day your life is a bed of roses, the next, as I called it, a utter "medical nightmare rollercoaster".  I am married, I have had cancer, I have had medically induced menopaused, I have endured chemo, and all the other lovely things tied into this beast called Ovarian Cancer.  And you know at the time, I honestly never thought of what my husband was going thru, I couldn't get past of what I was going thru.  I can honestly say at this point, our marriage has suffered.  We've been married 23 years.  There are so many emotions and obstacles, I wish I could give you some advice, but I can't.  
You do need some time to escape, "the Cancer", but it does consume you, especially when there are many set backs like you are experiencing now.  You are not weak in by standing up and saying, Hey, I need some help here, I need to talk.  Sometimes you might need to laugh, yell, scream, or just cry.   Do you have any family members, friends, someone that you can talk to?
I wish I could you some magic potion that will make this all better.  But Cancer changed me, it changed my husband, it changed my marriage.  I love my husband and I know he loves me, but it takes alot of work.
I am so sorry that you have to go thru this.  We will keep you and your wife in our prayers.  Don't ever give up hope.  We all here on this forum will be here for you, as much as we can.  Take Care.  God Bless.  Jane.

[ireneo]

The two of you have been through quite a long struggle with so many major changes to her body and your lives. When I hear heart breaking stories like yours, I get especially irritated with folks whose big trauma of the day was getting stuck in traffic or losing their iPod. You know what REAL stress is about.

As for intimacy, I know you crave the closeness. Perhaps the two of you could try different approaches without penetration (I'm thinking a lot of gentle touching and stroking without rushing through it). That can be very comforting and satisfying.

The women here on the board are very understanding about the ups and downs of chemo and cancer. I just wish someone could start another board about how cancer hits the family and caregivers. Wouldn't that be wonderful? I'm not sure how many men would feel comfortable writing since the old fashioned idea of men always being the strong silent type is still prevalent. But we have seen a few men post here and it was a great addition.

I applaud you for being there for your wife. Neither one of you expected this to happen and it's a shock. She needs you and you're doing what you can. But don't forget to take some time for yourself to decompress. If you get exhausted, then you could get sick or angry and impatient. That won't help either of you. I don't know how well she's doing on her own but if need be, enlist the help of friends and family or even home health care nurses so you can have some quiet time for yourself. A couple of hours can make such a difference.

I hope the chemo treatment works and you can both get back to living your life the way you had dreamed.

[hopeshell]

I am so sorry to hear of your wife's recurrences and I am sad for you too because it is very hard to be a caregiver.  Ovarian cancer is a beast and it tries even the best of relationships.  It is very important you are there for your wife and I know you wouldn't have it any other way.   The stress of a chronic illness is immense...especially when the results of treatment aren't what we hoped for.  You need some time to get away and have a break from the cancer.  Do you have a friend or family member who could go with you to do something for a few hours each week so you have a chance to regroup?  It would be worth finding coverage to give yourself that break so you can refresh.  

I do not know any options to recommend regarding chemo as I was diagnosed with Stage 1a and don't have experience with chemo.  I was 37 at the time and I am married so I can relate to your disappointments with the change in intimacy.  I did not even have chemo and had a terrible time with pain and intimacy, so I can only imagine how tough it must be when you have chemo and recurrence thrown into the mix.  Your wife sounds pretty sick right now.  I can only tell you that she is not alone in having the pain and lack of libido.  Cancer brings a new normal and it is a hard adjustment.  Some gyn/oncs are ok with vaginal estrogen cream being used to treat the vaginal dryness which is likely contributing to her pain with intimacy.  You may talk about this with your wife and see if her doctor thinks it is ok.    

I hope you are able to find some time to get a break from the cancer.  It is such a terrible invader into a marriage, family and life.  You and your family will be in my thoughts and prayers.

Best wishes,

Shelly