Tuesday, February 26, 2013

Cancer and My Marriage


MONDAY, FEBRUARY 25, 2013

Cancer and My Marriage

http://womenwcancer.blogspot.com/2013/02/cancer-and-my-marriage.html
Note: Ask any survivor about side-effects or working with an oncologist and you’ll receive a notebook’s worth of helpful information. Ditto for managing cancer on the job or with children. But ask them about their relationship and you’re apt to hear variations on this theme, “He never blinked,” or “He really showed me how strong a man he truly is.” In other words, you’re not apt to hear what it’s truly like for some women. While we celebrate relationships where love’s better nature rules, it’s also time to honestly share the kind of stress cancer and its associated treatment brings to many two-income families where jobs, children, carpools and chemotherapy all need to be balanced in the course of a day. I was asked by a woman whom I admire to publish this essay here. It is my honor to do so.

 --- Jody Schoger


I never thought I would write an anonymous blog post.

Nonetheless, here I am, writing about cancer’s impact on my marriage after my late-night Google searches only yielded stories of marital triumph, replete with images of the devoted spouse proffering a tender kiss on his partner’s bald head. My hope is that the next despondent, lonely cancer patient might feel a little less crazy reading my story

I love my husband and do not want to be disloyal to him. I will remain strategically vague on some details and alter others to shield my family’s privacy. We have had the kind of marriage people say they can bet on. Single friends confess that they hope to find a partnership like ours. Obviously, things are always messier on the inside, but we undoubtedly share a strong love for and commitment to one another.

When I was diagnosed we’d been married with children for more than a decade. Like every couple we had our strengths and weaknesses. We were strong in the communication department, which allowed us to navigate the transitions of parenthood, moves and job changes.

Even with these strengths at our disposal, nothing challenged our relationship like my cancer diagnosis. I was in treatment for almost a year, with follow-up drugs and surgeries that impacted my quality of life for a prolonged long period of time, far longer than either one of us expected. I had chemo, a mastectomy and radiation which was then followed by a series of reconstructive surgeries. All the while, I held down a job, tried to help raise my children and hold things together.

Our marital glue was communication, adventure, and sex. Chemobrain wiped out my ability to communicate, especially about emotional issues. Strong emotions made me queasy,leading me to shut down even more. Also, my forgetfulness was a constant source of frustration to my husband, who came to treat me like one of the children, nagging and cajoling me.

The painful truth was that he wasn’t totally off-base in doing this. He had to keep the household together, and I was falling apart. As for adventure, it is hard to be spontaneous when you are immunocompromised, nauseated and unprepared for the undertow of fatigue that can pull you in and wipe you out. And of course, our sex life was horribly disrupted. Given the length of our relationship and the presence of children, we were surprisingly regular in our sexual activity. Chemo brought on chemical menopause; the mastectomy took away a critical erogenous zone and left me with profound loss of body confidence. Radiation, for me, was painful and a complete energy drain. All this together is the opposite of sexy.

I have read accounts of the sympathetic, supportive husbands who wait patiently for a partner to heal. My husband was like this probably two-thirds of the time. But he is only human. All the things I couldn’t do he did ... from driving carpools, cleaning the house, doing laundry, communicating with teachers, mediating sibling spats, and tween-age drama. He was holding down his own job, and could only watch as the little energy I had energy my went to my work. By the time I arrived home I was completely spent and totally unavailable emotionally or sexually.

Plus my bitterness at the length of treatment grew as the months dragged on. If it had been a month or two, I think we could have endured it and come out relatively unscathed. But this has gone on for years. Not only was this ordeal loosening our glue, but the friction points of marriage – the ways we see things so differently –– began to push us further apart. Because of my limited energy and concentration, we couldn’t have one of our major realignment conversations that used to bring us back to a place of mutual understanding and respect about our differences. Add to this mix the financial strain of decreased income and increased expenses. A chunk of my income comes from freelance work, which was now off the table because of my illness. Even though we have good insurance, I was stunned at how quickly medication co-pays and deductibles added up to big numbers. Money is the source of conflict even in stable situations and we began to argue about purchases that never were an issue before.

Eventually we hit several crisis points. There were the periodic pity parties my husband had about his utter deprivation, emotionally, physically and sexually. It was a stretch for me to comfort him, since he was basically right. Guys really don’t reach out to other men when they are vulnerable. Where I am sure my girlfriends would have rallied to my side had our roles been reversed, he was left basically alone. None of our extended family members live near us. There wasn’t a grandparent, an aunt or even a cousin to give him a break for any length of time.  Nor did it help our bond that he was petrified at the idea of actually losing me. At his lowest moments, he would vacillate between his frustration with my helplessness and the terror of my possible death. He told me through tears one day, "I can't stand that the one person I want to talk about all this with is you, and you are really not really able to talk."
Another crisis came after my treatment was over and I started to regain my cognitive and physical energy. It would no longer do for him to treat me like his other child. But it takes more than a simply saying, “Mom’s back in business.” The children had learned that Dad was the Real Parent in the house, an idea reinforced by the ways he would second-guess my authority as a mother. It was difficult to stand up to this. How do you stake a claim to your authority when you are not the same in memory, strength, or energy? I confronted him about this. To his great credit, he has worked with me to rebalance our parenting team, with the understanding that I am still not 100 percent. Regaining authentic balance in our partnership remains an ongoing challenge.

Our sex life is on the mend but is still a source of strife. I have not figured out how to feel comfortable naked, with all the scars riddling my torso and the false breast that feels numb and dead. My energy remains unreliable. At night, once the dishes are washed and the children tucked in, I often want to crawl in the bed to sleep. We are trying to be more deliberate about carving out time for ourselves and our relationship, but it is so hard. So, so hard.

There is a lot of talk in the cancer world about survivorship plans for patients. What I really need is a survivorship plan for my marriage. In my support group, I see a lot of people getting divorced after the crisis of treatment subsides. These wounds cut deep, touching our greatest insecurities. Luckily, I do know a handful of survivors whose marriages did recover. I just wish I had more of a roadmap for how to steer my marriage toward success and away from the potential disaster.

 #    #    #

34 comments:

Lynne Knowlton said...
What a beautiful & REAL life story about cancer. Funny how having cancer creeps into every single part of our lives. I'm a blogger, and starting blogging about DIY projects & design stuff... and eventually started writing about cancer. It blows my mind how many people FEEL the effects. Our partners, our friends, our family. Maybe my blog could help inspire you to get through it. I keep it REAL. My blog name is Design The Life You Want to Live at lynneknowlton.com
Thank you for writing the absolute truth about what you are going through. It really matters. Keep fighting the fight... and luvin' life along the way... big {{ hugs}}
Jody said...
I was grateful to our guest author as well and will pass your comments on to her.

Jody
mysemicolon.net said...
Thank you for this. I've been through so many of the same things, and am still slogging through after treatment. My husband has been remarkably patient, but I know that his patience is not limitless. Cancer wreaks havoc on caregivers as well as patients. It's a consolation to know, at least, that I'm not alone in this.
Jody said...
No - you aren't alone! I think it is simply so difficult to discuss publicly. Cancer leaves people vulnerable on so many levels - you're tired, you feel awful, and you can't complete your daily tasks. You are not alone at all. Treatment stresses the best of relationship.

Thanks for writing,
Jody
ChemoBabe said...
Jody, I am grateful to this woman for breaking the silence over the effects of marriage and cancer. Just as we do a disservice to the complexity of patients' experiences with war metaphors -- we have heroes and people who 'lost their battle' -- we also do a disservice to couples by only talking about the noble triumphs and utter disasters in marriages. We need nuance and I am glad to see the love and struggle of this couple shared. Thank you for being such a trusted person in our community that you could provide this venue.
Jody said...
I was so pleased to have had the opportunity to publish this, Lani. None of us are saints. I know that DH and I had stressful times during my treatment....if for no other reason -- as the author pointed out - that it goes on SO LONG. Not month after month, but year after year. To me the first five years following diagnosis (since for me this included tamoxifen) now seem like a long BLUR.

I can already see how the honesty expressed here can help other women.

Thanks for reading,
Jms
Facing Cancer Together said...
There's so much in this woman's story that rings true to my own experience. Cancer treatments were the hardest time in my relationship - not just because of the physical disconnection, but because of expectations not met and emotional gone wild. We made it through, but there were hard times. It's a big deal for someone to be so open with their relationship struggles. Kudos to this lovely writer for sharing her story. ~Catherine
Jody said...
I agree, Catherine. And I'm reminded how internal much of my own cancer journey was. I couldn't articulate what i was going through because I didn't have the energy or the ability to even put the words together. It's only in retrospect that I can see the difficulties.

Thanks so much for commenting -
jody
AnneMarie Ciccarella said...
All I can say to this: I am sobbing because it is all to relatable. Thank you to your anonymous author because this is the ugly backstory that seems to remain in the background. My marriage was strained and began to unravel at warp speed. I'm hopeful about the future, but I could have written every word of this. Every word.

Much love, Jody... for sharing the story and MUCH love to my "sister" who has spoken on behalf of so many of us.

xoxox
Jody said...
I hear you, AnneMarie. This stark post is resonating with women across the board. I don't think any woman intentionally gives a positive spin on a negative experience. It's simply so difficult to say these things aloud.

"So how are you doing," people ask after treatment....who can say...."I'm so tired I can't lift my head, our sex life sucks, and there isn't enough help to go around?" No one wants to hear that.

But here's the deal - other survivors understand. And we can support each other through that shared understanding.

Thank you so much for writing, and I'm tremendously happy to hear that you feel hopeful for your future. That is wonderful news, my friend.
xxoo
-- jody
Jackie Fox said...
Such an important story and thank you for sharing it. And an even bigger thank you to your guest author for posting it.
Barbara Musser said...
These conversations are timely and important, and have been swept under the rug for too long. It's why I do the work I do, called Sexy After Cancer, all about about cancer and treatments impact intimacy, sexuality and relationships. There were no resources for this when I was diagnosed 24 years ago, and I've been nosing around ever since, researching and creating tools and resources for these subjects. Have a look at my website ~ sexyaftercancer.com. I also write a weekly blog called Sexy Saturdays for The Pink Fund and a regular column on intimacy, sex and relationships for The Pink Paper. I hope to be a resource to you as well. xx
Jody said...
Great to meet you, Barbara. I saw that you spoke at the Conference for Young Women sponsored by YSC and Living Beyond Breast Cancer.

Thanks for the work you do,
Jody
Dianne Duffy said...
I soooo get this!

I was diagnosed almost 5 years ago and our marriage just took the real hit 6 months ago.

There is sometimes no new normal.

Makes me want to cry.

Dianne Duffy
jennt28 said...
WOW! Someone crept into my life and wrote about it...
Jody said...
Diane,

I'm sorry. We've all been at that terrible place. Keep trying to regain your health and serentiy.

Sending you good wishes!

JennT28,

I think all of us see ourselves in this article. Thanks for commenting,

Jody
Jill said...
Imagine if the author had metastatic disease. The side effects impacting one's marriage really do go on for YEARS and there is no break, ever.
Jody said...
I'm sure we're both grateful that she DOESN'T have metastatic disease. And the writer would be the first with support for those women who have been diagnosed with Stage IV breast cancer.

A problem for all of us with cancer I think, is in making comparisons between groups, stages or types of breast cancer. It's necessry for advocating for research funds, grasping quality of life issues, and it's necessary for understanding the isolation that women w/mets often feel.

This is one woman's story, honestly told. Her honesty has resonated with many. It's not about having/not having metastatic disease.

Maybe there is a story you would like to tell as well?

Jody
MightyCaseyMedia said...
I walked my cancer journey alone - my both my marriages were long in the dust before my dx - and this post makes me glad I did. Not because I think the poster's husband is a tool - he's not. He's human.

Given the circs - no extended family close by, the human male's lack of skill in sharing this sort of burden with other guys - I know that the woman who wrote this is much better off than others, friends, who I've seen standing chemo-bald in a divorce attorney's office because their husband bailed on the whole scene.

It took courage for her to post this, and I'm beyond glad that she did. Cancer isn't typically a hearts and flowers thing, Much more puking and tears cried alone in the dark.

Thanks her, and to you, Jody.
Jody said...
I agree, Mighty Casey. This was a hard post for her to write and for many to see.

The first comment on my FB page when it went up this morning was from a high school friend whose husband left her before he even learned how to spell chemotherapy. Not only did her life turn upside down from cancer but from his actions, too.

Thanks for supporting the writer:)

hugs,
Jody
The Accidental Amazon said...
Thanks for posting this, Jody, and thank you to the brave woman who wrote it. It was hard to be single when I dealt with my own cancer, but it was heart-rending to watch friends going through it & to see how often it destroyed their relationships -- and in a myriad of ugly and painful ways. This is another crucial nitty-gritty subject that needs a lot more airing and sharing. I'll be sharing this post. Kathi
Dave B. said...
Jody, Do you know about FORCE [Facing Our Risk of Cancer Empowered]? It's a national organization dealing with hereditary breast and ovarian cancer. I am BRCA positive [BRCA1 gene mutation] which I got from my mother [died at 42 of breast and ovarian cancer] and gave to my daughter. The FORCE website [www.facingourrisk.org] is chock full of informarion and chatrooms and your voice needs to be heard. As a FORCE member I am working on getting more men involved and one of the prime issues I want to deal with is exactly what you have written about.
Jody said...
Airing and sharing, KK - I love that phrase.

Thanks so much -
xxoo
jms
Unknown said...
Great post. I've become burned out on cancer survivors and their partners both being made out to be only saints, when usually that is far from reality. It's been my experience that most of us do the best we can and sometimes our best isn't enough, which is the way life really is.

Stories about what's really going on give us something more we can really connect with and learn from.

Best wishes to the poster and her family, especially her hub. And thanks for showing some reality. :)

KarenB
Joe Helfrich said...
I do hope I'm not stepping on any toes here, but I wanted to chime in a bit about chronic/catastrophic illness from the caregiver side--or maybe this is just venting for my own sake, I don't know. I'm not trying to offer advice. These situations are too complex.

My wife doesn't have cancer, and we no longer think it's a fatal degenerative condition, but that's about the only good things we can say say about it. She has, among other things, POTS and a COQ-10 deficiency, leading to symptoms that are very similar to the effects of chemo--muscle pain, exhaustion, mental fog, low stamina. We've gotten to the point where we're able to manage the symptoms, and overall she's slowly getting better; but realistically a complete recovery isn't likely, and we'll be dealing with this to one extent or another for the rest of our lives. And that's a daunting thought.

Our relationship started right as her symptoms started to be a significant impact in her life. Even once we realized the extent of things, but before we had a solid understanding of the causes, she was willing to run herself into the ground to do as much as possible; hearing a doctor prescribe tests for a half dozen fatal conditions makes you want to squeeze out as much as you can. But eventually even that determination ran dry, and it was another year or so before we finally had a clear grasp on what was wrong and could even start to manage the symptoms. It's been a couple years now since we've been able to turn things around, however slowly.

In some ways, and I hate to say this, the "getting better" phase has been harder on me. She jealously guards her energy and her time, and her capabilities. And I don't blame her for that. But for the longest time, the hope was about finding a way for her to get better. Now that she is...well, the rate of improvement has not been what either of us hoped, and the rate of shifting responsibilities has not been what I hoped. And after a day that involves waking up to get her meds at 7, getting my stepdaughter to school, working all day (thankfully from home) getting the kid from school, cooking dinner (while still "at work") getting the kid to bed, and trying (and usually failing) to keep up with the cleaning, I usually stay up to late, trying to be productive on personal projects or the state of the house, but mostly playing games to de-stress. And so start the next day on 4-6 hours of sleep.

It's not all doom and gloom, of course. There are days that are better than others, and there are days where she ignores the warning signs and gives more, be it attention or help. And sometimes she's even able to hide what it costs her the next couple days so I don't feel too guilty.

But there are still days when I just want to run and hide. Not get out of bed. Lock myself in a room and work on a project so I can feel like I've done something constructive at the end of the day, instead of just tread water. Or do what I did in college, and book myself a long weekend in the city, with a cheap room that barely qualifies as a safe place to dump my stuff, and spend days just wandering. I really, really miss New York.

But I want to take her with me now. So I get up, and get her pills, and hope tomorrow will be better.
Jody said...
Dave B.,
Yes, I know about FORCE and its founder, Sue Freidman, very well. In fact she was a guest on our weekly breast cancer chat on Twitter, #BCSM.

Karen B.,
I hear you. We sure AREN't saints. No of us.

Joe,
You're not stepping on anyone's toes. One thing the writer was clear about was how hard illness is on BOTH partners in a relationship. This of course includes children. There's no way around it - chronic illness is a slog. It's very difficult for all of us to say how bad at times; especially when the person we love is sitting right next to us. So I think it's important to recognize and support individual reactions and NOT take them personally.

Kudos to you for all you're doing, and best of luck to both of you. I hope your partner continues to improve.

Jody



Wendy said...
Kudos for sharing! There are so many great comments here and websites I definitely intended on checking out!
thesarcasticboob.com said...
Thank you, Anonymous, for being so brutally honest. I don't know if it it is possible to "right the wrong," so to speak. The cultural emphasis is so much on prevention and survivorship--the implication that when your treatment is over you have you life back. And when that five-year anniversary is met you're a survivor! It's all okay.

But it isn't all okay. After the diagnosis, the fear, the treatment--the crisis--is the where the real work begins: living the day-to-day after such physical, psychological, and emotional trauma. I understand the stage iv comment; it's not projecting stage iv disease onto the writer, but another manifestation of marginalization. Many stage iv women feel "ignored" by the larger pink movement. And I think many survivors are ignored as well.

Helping individuals cope with/adjust to survivorship is a conversation that needs to happen.
Yvonne said...
Hi Jody,

Please thank your contributor sincerely for sharing her experiences so candidly. There are elements of her experience that I can identify with very strongly in trying to keep all the balls in the air whilst cancer is trying to get the better of us. What clearly comes through is the strength, mutual respect and good will for each other that she and her husband both possess, and I'm sending them both all the good feelings I can muster that this will be enough to get them through and out the other side with a happy, loving, stronger than ever marriage. It will never be the same, the sands have shifted, but in time, it may be better than it ever was. I really do hope so. Yvonne
Jody said...
My dear Scorchy,
You're spot on: marginalization is never OKAY. As long as there are unheard voices in the cancer conversation then there is more work to do. All of us can get prepared for surgery; or coping with nausea during chemo. But who could anticipate the dents in the relationships with those we love the most? These are all cruel blows.

And Yvonne,
I love your assessment - of good will, strength and mutual respect. I will tell her. Her post meant a great deal to me as well - as you can see:)

Thanks for your comment,
Jody
lisa adams said...
Thank you to Jody and the author of this insightful piece. I agree that relationships change during treatment, in ways we never would have expected and are often not discussed. As has been touched on in the comments, the emotions and issues can be similar, but there is also the issue of potential change that can vary among women. When a woman is diagnosed and expects treatment/side effects to be temporary, her partner may be able to think it will be so, too. As time goes on, and/or if there is a metastatic diagnosis, the reality of "this will never get 'better' " may have other repercussions.

For young and old, stage 0 to stage 4, there are many discussions to have, and this was such a great introduction to many of those issues... and opened the door to many more talks about this. And I would be VERY interested to hear about this topic from a male who has undergone treatment for breast cancer.

Thank you!
itsthebunk said...
Thank you both for this great post, Anonymous for writing, and Jody for providing the platform and support. Much courage and trust must have been required to share this inside look at *Reality* in your marriage.

I echo Kathi Kolb in that I experienced cancer as a single person, which had its own issues, challenges and burdens. If I learned anything from Rachel and Susan, it's that the more we differ (married/single; younger/older; early stage/metastatic), the more important it is to share/hear each others' true stories. In opening windows between our different realities, we get to understand each other better, support each other more easily, and become better advocates.
wintin said...
My wife has had cancer on and off for four years now. Chemo, surgery, remission, chemo, remission... I love her more every year. It is hard for her and for me, but before she was diagnosed there were other less important reasons our relationship could be hard. It's a matter of degrees. Relationships are never perfect. The key is the core of love and respect, which does not waver. I love her, I admire and respect her...
Jody said...
Thank you, Lisa. The reality of "it will never get better" is so hard to grasp. I don't know how you describe the adjustment; the grappling with and coming to terms with a drastically altered life. I so admire your incredible ability to articulate this for all of us.

Liza,
You've got it! Even with differences it is essential for us to "hear/share each other's true stories...." That is lovely.

And Wintin,
Thank you for your beautiful perspective - I know from my own experience, since we have had four cancers between the two of us - the love and respect deepens with time. We are more patient. I know how he reacts to things and vice versa. It is quite different from when I went through treatment almost 15 years ago.
Wishing both you and your wife all good things,

Jody

http://womenwcancer.blogspot.com/2013/02/cancer-and-my-marriage.html

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