I'm tired and worn out - help please...

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I'm tired and worn out - help please...

by tdinewguy on Wed Jul 28, 2010 05:37 AM

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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 - 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.  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 - but it HURTS and bad.  Painful going in, painful during and lubes don't help, and painful urination afterwards.  That sucks...  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% 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.

RE: I'm tired and worn out - help please...

by barb01 on Wed Jul 28, 2010 12:32 PM

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Wow - you have been through the mill. You definitely need some additional support. Please contact the American Cancer Society to find a local support group. There you will meet others that can help you through this. You might also want to talk with your doctor who may recommend some anti-depressant meds for you. Also ask the oncologist or your local hospital about support groups or services for caregivers and their families. Perhaps your doctor can give you some advice or help with your intimacy problems with your wife.

You are truly an amazing husband. I know how cancer can suck the life out of it's victims but it can also be devastating to the victim's caregivers. Has the doctor given your wife any prognosis? It sounds as though your wife is very ill. I don't know if I should ask this but is hospice something you might want to discuss with your doctor? They treat the whole family - not only the patient.

If your wife is in the hospital again (and I hope she isn't), she will have a social worker assigned to her case. They can help you get additional support too.

If you belong to a church you can ask them for help. Maybe they can provide dinners or have someone stay with your wife while you go out and see a movie or visit with friends. Your wife's supporters may not know you need support. Don't be afraid to tell them. Take your kids out and have some fun with them. They must be feeling upset too. Give them some normalcy. Try to be patient with them. They are suffering too.

Is it possible for you to join a gym? If you can get away even for 30 minutes or an hour a few times a week and work off your anxiety it would help a lot. If you can't get away buy a big punching bag and put it in your garage or basement. Take out your frustrations on that.

I know you have limited time - especially being self-employed. I can identify with that because I have a business also but you have to make some time for yourself or you will burn out and be useless to your wife.

Finally, you need to let everyone know (your friends, church, family, doctor, American Cancer Society local support group and anyone else you can think of) that you need support. A lot of men try to be stoic and men don't always speak up for fear of being thought of as weak or uncaring. SPEAK UP! People may want to help you but they may be waiting for you to ask. You have been a true warrior. You will get through this. If you are inclined to do so, pray. God is there to walk with you and comfort you. Ask for his help.

You have my utmost admiration and respect. Please hang in there not only for your wife, but for your children.

I hope you can get the support you need. Remember, the members on this board are here for you always.

Barb01

RE: I'm tired and worn out - help please...

by Lizabeth1999 on Wed Jul 28, 2010 01:39 PM

Quote | Reply

I am so sorry you are going through all of this.  We have been through quite a roller coaster as well, so I can appreciate your struggles and completely empathize.

Being a caregiver is probably the hardest thing you will ever do.  I have found that even when people are good-intentioned, they still have absolutely no comprehension of what you are going through.....and they don't know how to help.  If you have friends who are willing to help.....tell them specifically what they can do for you, i.e. pick up some groceries, do some laundry, bring over dinner, watch the kids.  People feel helpless (and then you will encounter those who are completely useless).  But there is someone out there who is willing to help, they just have to know how.  It's hard to ask for help.....but it's necessary.

As far as intimacy....for the time being, you probably need to find a new way to be intimate.  It sucks and I get it.  But right now, you can't afford to lose a connection too.  Caress her arm, hold her hand, tell her you are amazed by her strength, kiss her forehead, tell her you are there for her....I guess just show some tenderness and closeness and kind loving words.  The other intimacy may take a while just due to her illness alone, not to mention the medical menopause.....

RE: I'm tired and worn out - help please...

by katmagoo on Wed Jul 28, 2010 02:44 PM

Quote | Reply

You have been thru a rough time, heres a scenario that will make you laugh, I am a careprovider, I have help, two sisters they cover 20 hours each for mom I cover the rest, I imagine you pretty much do it all, well my poor boyfriend should have a meddle because my mind and body just will not allow me to relax and the other night we finally got an evening together and when he tried to get things going I pretty much Yelled "get off me!" I couldnt even breath at the thought of intimacy, it was like I couldnt take that time away from worrying about mom. He is very good about understanding the mental drain of this, My mom is dying in her apartment in a hospital bed provided by hospice and sleeps alot so why am I so tired. Of course its stress, and the bad habit of sitting on a near by couch watching her breath and never sleeping, I imagine your guilty of worrying and not resting enough, too. The thing is she has to be so exhausted and then you add hormones and she probably has a hard time mustering up enough energy to even feel like having sex. Its a bad situation, you are clearly a good hubby, be patient, I told my boyfriend(jokingly) that he could go out to my house and have his way with my computer....some how I thought he'd be comforted by that...not so. Anyway, I will pray for you and there are lots of alternatives, be creative, try some meditation, workout, self love lol. kathi

RE: I'm tired and worn out - help please...

by wwjdmom on Wed Jul 28, 2010 02:51 PM

Quote | Reply

On Jul 28, 2010 5:37 AM tdinewguy wrote:

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 - 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.  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 - but it HURTS and bad.  Painful going in, painful during and lubes don't help, and painful urination afterwards.  That sucks...  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% 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.

If I lived near you...you are near Mayo...so that's a no...I would come and cook, clean, and care for your boys so you could take a breath.

 

RE: I'm tired and worn out - help please...

by tdinewguy on Wed Jul 28, 2010 09:32 PM

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Wow - thanks everyone for your thoughts...!

 

First off - she is actually very well and overall healthy - so we are not even close to hospice.  It's been a tough 2.5 years, but she still takes care of herself most of the time.

The chemo is rough because it's weekly and she barely gets a break.  Last night I was almost at wit's end because she was so ill feeling and we have been at odds.

Today we went to our church and got counceling from one of the pastors.  That was very helpful for both of us.

As for "self love" or going to use the computer, that would just set her off - it's a major no no, and I'm not really interested in that kind of thing.  She is physically able to be intimate, but her attitude and emotions have NOT been there.

Isn't summer time supposed to be about the good times?  LOL...  We are going RV'ing (camping in the motorhome) this weekend with other friends - so I'm looking forward to that.

I do need to ask for help - as the domestic part of our life has been a challenge.  My wife really has been on the healthy eating to help with the cancer, but me and the kids - and her for that matter are eating at McD's and Arby's and junk food a lot more than we ever did pre-cancer.  It's about convienience at this point.  Part of it is we don't want to be a burden to our families or freinds.  From their perspecitive they see us "generally" normal - and they think (of me that is...) why can't He cook, clean and change diapers - his wife is the one that is getting well...

So being that we are 35 with young kids - our friends are in the same bracket and especially the other wives (from my perspecitive) think I'm not doing my part, and I should not care about sex - because my wife is the one going thru cancer.

HOLY @#$%@#$% people!  they have NO idea what it's like to be me.  And let me say - I'm NOT looking for a pity party.  I'm a self motivated professional business owner.  I have 12 employee's and a business to run - that pays for our health insurance, and pays my salary.  So 2-3 years ago we were VERY profitable and I bought some toys - a motorhome, a muscle car, whatever... and the last few years have been losers.  So to most I LOOK "rich" - because I paid for my toys, but if I were to sell any of them - I would not get what they are worth back, and to add insult to injury, I would have to pay TAX on what they sold for.  One example - I bought a new GMC truck in 2008, but sold it in Jan 2009, due to the economy.  Well I sold it and had to pay something like $10K in TAX - income tax!!!  If I knew that then I would have NOT sold it.

Anyhow i'm ranting, but I hope you get the point.  If I worked at a regular 9-5 job, and drove a rusty car, then I think I would probably get more sympathy.  It would also probably be EASIER to deal with - as punching a clock and doing some manual labor is not a stressful job, running a company where there are a dozen other families counting on the success of the business to put food on their tables is a bit stressful...  ok - enough ranting.  Sorry...

I guess part of me needs a point where I can just say what I think and not be judged by it.  I do appreciate everyone and your prayers.

I know we will get thru this - no matter what.  I just need to ask for help where I need it and not be ashamed about it, right?

RE: I'm tired and worn out - help please...

by tdinewguy on Wed Jul 28, 2010 09:49 PM

Quote | Reply

I forgot to address a few things...

I have thought about the anti-depressant, but one of the side affects of most is it kills sex drive - eg. prozac.  That does not sound too exciting to me.  My wife and I have talked about taking pills, and the DR actually perscribed them for her, but she has not taken them.  I know Wellbutrin is one that is supposed to not affect the sex drive.  Maybe if I can get her on those I'll take some too... LOL...

The prognosis?  none of our doctors have told us anything other than it's something (her prognosis) that will be a lifelong battle, unlike when she was first diagnosed.  I have talked with other doctors offline (via e-mail) and they say given the timeframe and recurrence - it's not a good prognosis.  BUT I do believe in miracles, as does my wife.  We are praying and believing for one. (or more than one... LOL)

The kids - we really try to keep them in the know as much as reasonable - but a 2.5 year old does not really know what's going on - the almost 5 year old kinda gets it.

I have been working out some - I set up my old stereo in the basement with a weight set and crank it up and pump iron.  It does help get my brain re-set.

I don't sleep enough - partly because I'm up doing research online after everyone else goes to bed.  Also because I really don't get any "ME" time when the kids or wife are awake.

Put the right way - (being polite) - my wife had gotten a bit selfish and dependent on me.  Being that it's been a few years now getting served - and not trying to make light of the struggle she has been thru - people who are "sick" tend to become selfish.  I don't love her any less, but that is tough when my desires/needs are continually not met.

We did recently hook up with MOCA - the Minnesota Ovarian Cancer Alliance - they have a young survivor network and they had a picnic last weekend so I got to meet other survivors and the husbands.  That was good/fun!

 

RE: I'm tired and worn out - help please...

by Lizabeth1999 on Wed Jul 28, 2010 11:13 PM

Quote | Reply

Let me share a recent occurence in my life.  One of my husband's relatives regularly comes over to visit.....usually at the most inconvenient times for me.  He never brings a thing....just comes and goes on this way to and from the golf course.  Almost every time, he asks "Is there anything you need?  Can I get you anything?  I'm around....just ask."  I never do.  Well this past week, I did.  I needed one simple thing from the store....for my husband, not me.  Well a week passed and he never brought it.  He came to visit at least twice, but never brought the requested item.  He even came one time to pick up one of my husband's golf clubs on the way to the course.  So you see what I'm saying.....some people are useless.

Then there are others who really don't comprehend what you are dealing with.  They see you strong and coping well (on the surface) and maybe even acting seemingly normal.  They think things are normal.  They intellectually know what's going on, but don't see any real change in the way you go about your business.  Those are the ones who you may need to reach out to.

Then there is the gold.....the family and friends who do things because they just know.  If you don't have these kind of folks, then speak up to the ones who really don't understand but would be willing to help.  It may be hard to know the difference, but you'll figure it out.

Intimacy: I'm young, I'm active, and it's definitely something that is missed.  But honestly, any attempts at this point would be disappointing.  Sometimes I massage my husband's feet, just hold onto his hand or arm, kiss him, tell him I love him, etc. It just keeps the connection and love alive even though somethings are "on a break".

I am also the breadwinner now and my insurance is covering things.  So you work full time, care give, maintain the household, etc.  You do need to take care of yourself, because you are no good to your wife if you are incapacitated.  And my husband now relies on me to make all the tough decisions....and I do cater to him, but sometimes I have to push him to do things for himself.  It's definitely a balance.  Don't get too strung out.....Peace and go well.

RE: I'm tired and worn out - help please...

by kathyindiana on Thu Aug 05, 2010 02:32 PM

Quote | Reply

Take care of yourself! Can't stress this enough. I was my husband's primary caregiver for over 3 years. I went through my breast cancer treatment after he passed. Get help, try Hospice if the outcome is not good. Don't be afraid, it is only her body that is stricken, not her soul. Take care of her and yourself and leave the rest to God.

RE: I'm tired and worn out - help please...

by dalles11 on Sat Aug 14, 2010 05:17 PM

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Ugh.  I read your story.  What a mess.  I went to this caregiver sight this morning, because I am sick and frustrated with bringing my mom to the bathroom twice during the night, and changing soaked sheets once in a while, while trying to work part time and be a good mom and a good wife.  People wonder how I do it.  HOW DO YOU DO IT?  I really hope you have found some decent support.  I'm sure my husband would be more than happy to email you with some support- totally different situation, as we are caring for my mom, but it might be refreshing to vent to another guy?  I don't know.  Let me know if you think you want to talk with him.  He can at least relate to the caregiver stuff, and we are around your age.  You can be honest with him.  Send me a private message if you want his email.  I wake each morning (tired) and tell myself it will be a better day.  I lie awake each night telling myself how much this sucks, and how I am done with all of it, and then I get up in the morning and try to erase the nighttime crazies that have gone through my head.  I sincerely hope this helps!

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