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