Divorce vs. Cancer, by Mary Beth

I have not blogged on this site in quite some time. I just had my 5 year and 6 month check-up and I am good, a few minor problems but let me emphasize minor. The past year has been a very difficult and trying one. After 28 years of marriage I found the courage to ask for a divorce.

I have always been afraid of divorce. I am not sure if it was because I was so young when we met. If I was afraid of being alone… which is a funny concept because I have felt alone for much of my marriage. I was afraid of what others would think. I was afraid of the kid sharing. I was afraid that once I asked for a divorce he would not support us. I was worried about money, which is also a funny concept because I was worried about money with him too….probably more so. I was afraid because he was my first love. I was afraid to have to try to meet someone else to spend my life with and now even more so as a cancer survivor, with a double mastectomy. I was afraid because I love the idea of marriage and family and I desperately wanted to have a long-term marriage and a good family life for my kids.

We had talked about divorce many times and in fact were very close in 2006 and then the cancer diagnosis. We stayed together, but in hindsight I think that was the final nail in the marriage coffin… thank goodness in was not the final nail in my coffin. I learned so many lessons from my cancer, mostly what is truly important. It changed me in so many ways. I guess I thought it would change the others close to me too. I have learned that just because we learn lessons, it does not mean everyone else does. So many times after the cancer I felt like the glorified nanny and housekeeper. There were many issues that I could not talk about then, that I hope someday I can share in case other women experience the same with their marriages.

Over the past 5 years since my diagnosis, those that knew of my marital problems would say “you survived cancer, you can survive divorce”. I heard what they were saying, but I just could not find that courage. I felt cancer was different. I had a team of doctors that I trusted. They said “do this” and I knew I would do it and follow their directions to the letter. There is no trust in divorce… another funny thought because there was no trust in my marriage either. I was not blessed with being able to trust those who are supposed to love and protect you.

I was so afraid of asking for a divorce and then having my cancer come back, what would I do? I don’t know if my cancer will come back, but I know if I stayed it definitely would. I found the courage. Divorce is hard, but cancer is harder.

On the tough divorce issue days I think of the other Mothers on this site who are fighting their cancer daily, hourly and by the minute. I think of the women that we have lost and their valiant fight, they remind me everyday what is truly important and then I remind myself… “if I survived cancer… then I can survive divorce.”

Please say a prayer or lots of prayers and healing thoughts for one of our fearless and amazing leaders, Susan, she has been having some breathing and pain issues and was admitted to the ER on Tuesday.

Stream of Consciousness (by Judy)

I was just looking at my notes from the Metastatic Breast Cancer Network (MBCN) Conference that I attended last weekend in Baltimore, MD. I was hoping to find something that would lend itself to a coherent, theme-specific post, but instead I find little bits of information, some of them like golden nuggets that I can stash away until MBCN has the conference and power point slides online in about a month.

I wil share some of these nuggets, though, these little bits of information that, for whatever reason, struck me at the time as important enough to write down.

So here goes a disjointed, fragmented post . . . even though it’s all about metastatic breast cancer (MBC). That’s the thread that holds it all together.

One of the speakers talked a little bit about how the Network first was formed because two women, both with MBC, felt isolated and alone in support groups of people with early stage breast cancer. Things like going pink all of October or celebrating the end of treatment “is not possible with metastatic disease.” I know what she means, what the founders meant. I chave totally different conversations with those with early stage breast cancer (BC) than I have with those who have MBC. The ones with MBC seem to intuitively know what I’m going through, what I’m feeling and even thinking. They understand the very real fear of dying, of leaving this earth before I’m ready. They understand the worry I have for my child, my husband, my little family. They know that talking about death doesn’t mean that I’m obsessed with death or that I think I’m going to die soon. They understand that it’s a deep need to understand what will eventually happen to me with this metastatic disease. They understand all of these things because they live with these things themselves.

Approximately 30% of people diagnosed with early stage breast cancer will at some time develop metastatic breast cancer, cancer that has spread to organs other than the breast. Breast cancer, if confined to the breast, doesn’t kill. MBC, however, kills. And there’s very little research done on MBC.

One of the reasons that we also may become, in Whymommy’s words, cancer rebels and pink protesters, is that we can’t be happy and pink during October. We can’t join the throngs of “survivors” if we’re not going to survive this disease. We know we’re different, that we’re what they fear the most. How can we join in when we’re the black sheep of the breast cancer movement, the bad girls of breast cancer?

We can’t. We stand out. People get quiet when we tell them that we have MBC. They don’t, understandably, know what to say, although I think an “I’m sorry” or “I’m sorry to hear that” is always something you can say to people who are struggling not just with breast cancer but with so many other things that happen to people.

We are the 30%. I am part of the 10%, the percentage that was diagnosed with Stage 4 disease from the outset. I guess that makes me one of the REALLY bad girls of breast cancer. And it makes me unpopular with some people, with people who only want to see the happy stuff, with people who are uncomfortable with my diagnosis, with people who just can’t face the fact that I won’t be around someday, that barring a miracle or sudden death from something else, this cancer will take me in a horrible way.

Trust me, it’s not something I like to think about, but I have to. I have to try to prepare my loved ones that someday I won’t be here, I may be in hospice care, they may watch me die. Believe me, I don’t like that image any more than anyone else does, but the difference is that I can’t pretend that it doesn’t exist, I can’t say, “Oh, you’ll beat it,” because MBC is an equal opportunity killer — it takes fighters, optimists, supplement-takers, vegetarians, the religious, etc., just as much as it takes everyone else.

I will die from this. My husband, bless his heart, still says, “I hope not,” even when I try to talk to him about things that are important to me, that I think he’ll need to know about if it gets to the place where he’ll have to raise our son by himself.

*sigh* It’s a hard life. Even so, I love my life and I have an amazing God and I hope and pray for treatments to extend my life for a very long time.

That, and a good medical team, keep me alive for now . . . .
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Cross-posted to Just Enjoy Him.

The Herd of Elephants in the Room (by Judy)

You know, sometimes I just want to talk about death. Not always, but once in awhile. That’s my Herd of Elephants in the Room. At least that’s what it feels like because nobody wants to talk about it, but it’s there, in the background, in the periphery. Sometimes it’s the last thing I want to talk about, think about. However, there are times when the elephants that are always with me — in the living room, the kitchen, at work — want to make themselves known.

I want to talk about death in the personal — my death, and in the abstract — death in general. I want to talk about my fears. I want to talk about how my own death will affect me, what my dying will probably be like. No one wants to talk about it, though, and I get it; I do. My death will affect people who love me. Their lives will be different; they will miss me. I get it. That’s why, I think, when you mention death, people often make it about themselves. “I don’t want to talk about that.” I’ve heard many versions of “I just know you’ll beat this!,” when the fact is that I may live for years with it, but it’s unlikely that I’ll beat it. It’s unlikely that in my lifetime, however long that is, a cure will come for this. I know that. I live with it every day, every hour, every second.

It’s no wonder sometimes I feel the need to talk about it, but I don’t. For the most part, I keep my thoughts to myself because I don’t want to upset people, I don’t want to hurt them. I don’t want to invite them to see the herd of elephants behind me because they’re big and scary and all too real . . . even if they’re just a metaphor.

Listen, I hope I beat this. I would love nothing more than a miracle that brings me to complete remission for a long time. However, I also realize how unlikely that would be. It’s the truth; no need to deny it. I want to talk about how much I’ll miss, how much I’ll miss the people that I’ll leave. I want to talk about how I love my life and even though I know that when I die I’ll be in heaven, I don’t want to leave this life yet . . . or anytime soon or even anytime in the next several years.

Sometimes I just want to say that.

But I keep the elephants quiet and in the background. I keep them hidden. I keep quiet . . .

even when I don’t want to.
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Cross-posted to Just Enjoy Him.

big words, acronyms, and an amazing God (by Judy)

Sometimes I think I live my life lately with big words and acronyms:

– metastatic/metastasis
– inflammatory
– INR
– CBC
– navelbine
– herceptin
– coumadin (or warfarin)

etc. . . . .

It can make one very weary.

*sigh*

So how does one cope?

People who are living with a terminal illness cope in different ways. I’ve realized lately that, while I know about my disease and the facts about it, I do better if I don’t read or research about it too much. I guess I’m a head-in-the-sand coper, someone who needs to shut it out of her mind . . . as much as that’s possible anyways.

My faith helps me a great deal. My church family prays for me, family and friends pray for me, and of course I pray for myself. I believe in the power of prayer, and I also believe that so much of my illness is out of my hands. I want to live a long time, but I don’t know if that will happen. On the other hand, it might happen. I simply don’t know, and I put my faith in God. It’s then that I cope the best, when I put my faith in God and lean on people who believe in me and are pulling for me.

This past weekend I went to the Women of Faith conference in Columbus with six women from my church. It was an amazing, uplifting two days. One of the speakers was Angie Smith whose story can be found at the blog Bring the Rain. In short, she and her husband were expecting their fourth child, another girl, and found out during her pregnancy that their future daughter had severe health problems and wouldn’t be able to live outside the womb. That daughter, Audrey Caroline, lived two hours after she was born. I tell you, there wasn’t a dry eye in the auditorium when Angie told her story. At any rate, she ended with a statement that I don’t think I’ll ever forget:

I have a hard story, but I have an amazing God.

I related. Not in the same way as Angie or other women who had experienced the same or a similar loss could relate. But that statement resonated with me:

I have a hard story, but I have an amazing God.

So true, so very true. I do have a hard story . . . . but I also have the same amazing God.

And He gets me through the days . . . when I let him.

Readers . . . I have a hard story, but I have an amazing God.

And when I realize that, when I can live that, I know that no matter what happens, I’ll be OK.

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Cross-posted to Just Enjoy Him.

Answering “How ARE you?”

When I was first diagnosed with cancer‚ everyone asked me‚ “How are you?” As if troops were gathering to wage battle against my fear and loneliness‚ “How are you?” became a comforting codeword for “I’m on your side.”

But within a few weeks‚ the chemotherapy began to take its toll‚ the shock and novelty of being a patient wore off‚ and I came to dread being asked‚ “How are you?” This question undermined the distraction and healthy denial that minimized my distress.

If I answered truthfully‚ I had to absorb the hints of disappointment‚ anger‚ frustration‚ sadness‚ fear‚ and helplessness that splintered others’ words of comfort. I found myself consoling those who asked‚ and then fighting the contagion of grief and fear. Even when the news was good‚ I didn’t have the energy to include all the people who wanted updates.

After my treatments ended‚ the prickles of “How are you?” sabotaged my attempts to move on. One day I spilled my frustration to my good friend‚ Debbie‚ “People keep probing! They don’t say‚ ‘How are you?’ but ‘How ARE you?'” Debbie suggested that I was being oversensitive. “It’s just an everyday greeting. Maybe they don’t mean anything by it‚” she said gently. Not buying her argument‚ I explained how I’d answer‚ “fine‚” and they’d double-check‚ “Really?” their eyebrows raised and their chin dropped ever so slightly. I told Debbie how one of my colleagues came over and asked the usual. Despite my enthusiastic‚ unequivocally positive response (“GREAT!”)‚ he then asked‚ “Are you still in remission?” “No‚ it was not my imagination. People weren’t simply saying “hi‚” they were asking for my latest scan results.

No matter how it was intended‚ being asked‚ “How are you?” rattled my heightened sense of vulnerability by virtue of its literal meaning and my sense of not knowing how I was. My desire to be polite often battled rising confusion and panic as I thought‚ “I’ll find out when I have my check-up.” I told my friend Debbie‚ “I wish they didn’t ask.”

Debbie took their side‚ “Wendy‚ they are asking because they care about you.” She then listened patiently and tried to understand as I shared my struggle to find a “new normal” after cancer‚ one that included persistent fatigue and frequent doctor visits. I suggested she say‚ “How are things?” or “Good to see ya‚” adding‚ “Don’t walk on eggshells‚ Debbie. When‚ out of habit‚ ‘How are you?’ slips out (and it will)‚ don’t worry about it. I won’t take your question literally unless I want to.”

That offhand last comment led me to the key to surviving “How are you?” When friends ask‚ I can respond whatever way works for me‚ trusting that the person wants to “be there‚” whatever “be there” means that minute.

With my answer‚ I can share the truth about survival: Some days are good‚ some bad; sometimes I need to escape‚ sometimes I need to talk it all out‚ sometimes I need to be held‚ other times I need space‚ and I’m not always sure what I need (so they can’t know‚ either). I’m learning to recognize when “How are you?” is meant as nothing more than “hello.” Occasionally I screw up and start to give a detailed or philosophical answer to someone who really doesn’t care or doesn’t want to hear. That’s OK. And I forgive all the people who say the wrong things. I’ve said a lot of stupid things in my time. As for the rubberneckers‚ I tell them “I’m fine.”

“How are you?” is not an intrusion‚ but the glue that holds Debbie and me together. Our initial responses‚ both verbal and nonverbal‚ telegraph if one or the other has news or problems or worries to share. We know within seconds if one is in need‚ even if that need can’t be met at the time. And‚ I was mistaken when I thought that I didn’t know the answer. Although on any given day I may not know what my next scans will show‚ I do know how I am. Cancer tuned me in to my body and clarified who and what are important in life. If anything‚ after cancer is when I started to really know how I was.

“How are you?” may never again have that innocent sound because I can’t go back to the way I was before cancer. That’s good. In letting others care for me‚ I’ve learned about caring for others. Whether I’m anxiously awaiting a check-up‚ or undergoing another round of treatment‚ or enjoying a blessedly ordinary day‚ Debbie’s three little words‚ “How are you?” stir emotions because they are powered by three other little words: I love you.

[I wrote this many years ago. Ever since, I’ve had no trouble with the “How-are-you” question. This supports the idea that sharing and working through something in my head — or with someone who cares — makes a difference, even when the circumstances remain the same.]