Category Archives: Gratitude

7 Things I Wish I Had Known Before I Had a Double Mastectomy

Here’s the short version of my story: a few months ago, I was diagnosed with DCIS, a highly curable, non-invasive form of breast cancer (some people consider it to be pre-cancer, but most health professionals think of it kind of like the not-bad kind of skin cancer…something that has to be dealt with, but it’s not going to kill you.) But because of my family history (dad with breast cancer – big red flag), my breast surgeon recommended that I be tested for the gene mutation that increases the risk of breast and ovarian cancer. On New Year’s Eve, I found out that I have the BRCA2 gene mutation. I spent about 48 hours thinking about my options, and quickly decided that I did not ever want to deal with invasive breast cancer or ovarian cancer, so the best course of treatment for me was to have a double mastectomy and oophorectomy (which I think is a funny word.) I’m sure that to some people, 48 hours doesn’t seem like a long time to think about such a big decision, but I had really started thinking about it a couple of weeks earlier, when I had the blood test. After meeting with the breast surgeon again and a plastic surgeon, I decided that I would have reconstruction with silicone implants, vs. a transfer of my own fat.

I admit, I did not do a lot of research about what to expect from a double mastectomy. Honestly, a lot of people kindly offered to connect me with other breast cancer survivors and people who had mastectomies, but I didn’t feel like I belonged in other group. I was fortunate that I didn’t have invasive cancer. so I didn’t belong in that group. But I did need treatment, so I didn’t feel like I belonged in the purely prophylactic mastectomy group either. But it was probably mostly because I don’t really like to talk on the phone with people I don’t know.

I had spoken with a few friends who had had mastectomies and who told me it really wasn’t that bad (they were right.)

But in hindsight, here are the things I learned that I wish I had known before my surgery:

1. You can make a lanyard and wear your surgical drains around your neck. Once a nurse suggested this, it made living with the drains so much easier. I had been pinning them to the inside of my clothes/nightgown, and I could never get them in a place that was comfortable. At one of my post-surgical visits, the nurse made a lanyard out of a long, thin strip of gauze. And I wanted to kiss her.

2. The days were way easier than I thought they would be and the nights were way more difficult. I’m not used to sleeping on my back, or sleeping in one position all night. I would wake up every couple of hours, feeling really stiff and sore. After a few days, I got a wedge pillow and one of those pillows that you use to sit up and read in bed. Each time I woke up in the night, I would switch to the other pillow. So if I couldn’t roll over, at least I could be at a different elevation. Sleeping with a pillow under my knees helped too.

3. The reconstruction process was more painful than I expected, and I got more uncomfortable with each one. If I had it to do over, I would reduce the amount of saline they injected each time. It would have meant more reconstruction treatments in total, but each one would have been less uncomfortable and debilitating. (I had 100 cc’s put into each breast at each visit. I would split the last two into four of 60-50-50-40 if I had it to do over again.)

4. During the day, I was most comfortable sitting up in a living room chair. I absolutely did not want to be on my back any more than necessary. So I got a neck pillow so that I could nap in my chair.

5. I did not look nearly as bad as I thought I would after the surgery. Mainly, I just looked flatter than before. (I had nipple-sparing surgery,though, which made a difference.) I was really afraid to look at myself after the surgery, but it was really not so bad.

6. I was most comfortable wearing my husband’s button-down shirt after the surgery (while I still had the drains.) It was big enough that I didn’t feel restricted (and it accommodated the drains), and I didn’t have to lift my arms over my head to put it on (which, frankly, I really couldn’t do for a couple of weeks.) I had bought a number of button-down shirts in my size, which I did wear after I got the drains out, but they weren’t large enough at first. I also bought a bathrobe, thinking I would want to wear it, but it was too hot to sleep in, and I didn’t feel like changing my clothes at night for the first week. (Once a day was enough.) So that was a complete waste of money.

7. I was able to shower and wash my hair without help starting two days after surgery. This made me feel so much better. My wonderful sister (who cleaned my drains out for me three times a day, bless her) helped me in and out of the shower the first few days, but after that, I felt well enough to do it on my own.

I am now finished with the reconstruction treatments and will have these rock-hard chest expanders swapped out for nice, squishy silicone implants a month from tomorrow. And then this chapter of my life will be behind me.

But all in all, it was not nearly as painful a chapter as I expected it to be. And for that, I am very grateful.

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My 9/11

I flew to London the evening of Sept. 10. I had business meetings that week, and decided to spend a few extra days in one of my favorite cities. Tim, who would become my husband (but wasn’t yet) decided to come with me. I was always somewhat anxious about being far away from Emma, who was 8 at the time, but by that time I had done enough international travel that I didn’t think about it a lot.

We landed early in the morning, took the train and then the tube to our hotel in Leicester Square, and took a nap for a few hours. When we woke up, we went to a coffee shop to get some caffeine. The radio was on in the coffee shop, and I could hear W. talking about a bombing in the World Trade Center. At first I assumed it had something to do with the 1993 bombing – maybe someone was coming up for trial or something – but as I listened, I realized that something was happening in real time.

Tim and I quickly headed back to our hotel, and I stopped at a pay phone along the way to try to call Emma’s dad to make sure they were ok. But I couldn’t get through. When we got to the hotel, I tried again on the hotel phone, while Tim turned on CNN. Again, the lines were busy. I contacted the hotel operator to tell her I was having trouble getting through to the U.S., and she said something like, “You and everyone else, honey.” (I’m sure that it was a more polite British way of saying it, but that was the meaning.) As I sat down on the bed to watch TV, Tim handed me a glass of Jack Daniels from the mini-bar, with a look on his face that said, “You’re probably going to need this.”

At this point, it was probably 11:30 a.m. New York time. Both towers had fallen, but Flight 93 was still missing. I remember that it was impossible to understand what was going on – what had happened, the sequence of events – because there was so much going on, and so much confusion, that CNN wasn’t really reporting as much as showing images. Images of people holding up pictures of their loved ones, images (over and over and over) of the towers falling, images of people covered in white dust. Eventually I got through to Emma’s dad and my mom, so I knew that everyone was safe.

That evening, we gathered in a bar with all of the American ex-pats who were working for Unilever in London, and those of us who had traveled there for meetings that week. We just wanted to be together and laugh and cry.

For the next several days, I was in a state of constant anxiety. I didn’t know when we would get home…at times I wondered if we would get home at all. I wondered if World War III was about to break out. It was unclear if or when international flights were going to start again.

I kept praying over and over, “Please, God, send me a sign that everything is going to be ok.”

On Thursday, we went to the American Airlines office, because…actually, in retrospect, I have no idea why we went. It just seemed like the right thing to do. And while I was there, I saw the mom of one of Emma’s grade school classmates. Someone from home. Someone I recognized. And I had my sign.

(I didn’t know this woman well, and I can’t even remember her name. But after the fact, when I told the story to people, I referred to her as my angel. I ran into her years later, and started to cry when she told me, unprompted, that I was her angel that day. She had been praying for the same thing I had.)

After days of uncertainty, we were able to fly back to Chicago on Sunday, with our original tickets, as American had started flying to the U.S. again on Saturday.

Because all I felt that first week was anxiety, it wasn’t until I was back in Chicago that I was able to grieve. Able to feel like the work I was doing was pointless and futile. (When I expressed this to some others at work, they said, “Oh, yeah, we felt that last week. You’re a week behind.”) I remember that for a long time, the sound of sirens caused me tremendous anxiety. My heart would pound and I would start to sweat.

To this day, I feel like I missed something by not being here when it happened. I missed the opportunity to grieve with my family, friends, neighbors, and church community. I missed news stories. I missed being part of this collective outpouring of grief. The people of London were tremendously understanding and supportive. But it wasn’t the same.

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The world according to Bob Maue

My dad would be 94 years old today. In honor of his birthday, I’m remembering some of my favorite Bob Maue quotes:

1. If you keep watching Batman, you’re going to turn into a moron.

2. Why don’t you play it slowly until you learn it, and then you can play it fast?

3. Take the spoon out of that glass, or you’re going to put your eye out.

4. (In “sympathy” for my falling down the stairs): If you didn’t wear such dumb shoes, that wouldn’t happen.

5. (Also in “sympathy” for my falling down the stairs): If you wouldn’t come down the stairs in your stocking feet, that wouldn’t happen.

6. The sun is over the yard-arm. (Meaning it’s past 5:00, and therefore, cocktail time.)

7. If that guy had a propeller on his head, he could fly. (Said about a certain former pastor of our church, who will remain nameless out of respect.)

8. In response to my mom’s question, “If Ann-Margret came to the front door and asked you to run away with her, would you go?”: I’d have to think about it.

9. Jesus Christ, why can’t you let the clutch out slowly? (After about 5 stalls in a row, as I was learning to drive a stick shift in the Knoebel’s parking lot.)

10. While you’re up, get me a beer, would you?

I miss you, Daddy.

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Molasses and salsa

September makes me want to get organized. To throw things out. To find out how many jars of molasses I have in my cupboard and put them all together. (4. I have 4 jars of molasses in my cupboard. All of them open. And I have 4 bottles of Worcestershire sauce, 8 jars of salsa, 4 large containers of Crisco and more bottles of vinegar than I can even count. And cumin. Man, do I have cumin.)

But I digress. (Maybe it’s been a few Septembers since I organized the kitchen cabinets.)

September makes me want to go through closets and get rid of things that don’t fit anymore. (Don’t fit the kids anymore, I mean. Of course, everything still fits me.) To get rid of the mountain of papers in the office. To organize and fold. To clean that utility closet that still sort of smells like the cat died in it  bad.

I’ve long thought that the Jewish calendar, with the New Year in September, made so much more sense than the random January 1 date in the middle of winter. (Of course, I realize that it’s not winter everywhere in January. Typical American-centeredness, I know.)

September, with its cool (er) nights and low (er) humidity (okay, on some days), gives me energy. The start of school makes me feel like it’s a new beginning. Like the world is full of possibilities. Like anything is possible. Like this is the year that I will get organized and stay organized. Like this is the year I will write songs, and write in my journal every day, and talk to all the people I care about on a regular basis.

Yep, this is going to be that year.

And in the meantime, just let me know if you need any molasses.

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The way things are supposed to be

I recently heard a remark. One that I’ve heard many times before. One that’s difficult to disagree with. Someone was praising a young woman who called off her engagement, saying, “At least she called it off before they got married and brought children into the world.”

Now it’s possible that I’m a tad bit sensitive on this topic, having had two marriages that produced children and then ended in divorce. I do feel the sting of such comments. And I’m so grateful for the exact people that my children are, that I can’t imagine a world without them. And I don’t regret the choices I’ve made.

And when I hear people make comments like, “At least the person didn’t do ____”,  “Thank goodness she didn’t do ____”, I realize how my philosophy of all of that has changed in the past several years.

I’ve come to believe that things play out the way they’re supposed to. The way they’re meant to. The way they just do. Not good or bad. That young woman called off her wedding because it was supposed to play out that way.  Because millions of years ago, for whatever reason, things were set in motion. And each generation shaped the next generation. And as a result of all of that history, each of us came to be who were meant to be. To behave the way we behave because of the forces – parents, friends, circumstances – that shaped our lives. That our parents acted the way they acted because of the forces that shaped their lives. And so on. Back through the generations.

I stop short of calling it predestination. Short of believing in some grand being who knows in advance how everything will play out and watches it all happen. Because then you get into the whole, “how could a loving God allow all those bad things to happen” discussion, and I don’t have good answers, and then it gets icky.

And it’s not to say that we’re just puppets in some big “Kukla, Fran and Ollie” episode (sorry, I’m showing my age here), unable to make our own choices. We are able to make choices. And we do. It’s just that there are reasons why we make the choices we do.

I don’t second-guess the past (much, anyway.) I try to learn from it and move on. I try to inflict as little damage as possible (sometimes unsuccessfully.) But I don’t wish that things had been different. Because they were what they were.

And they are what they are.

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Evidence of a Benevolent God

I recently had a conversation with a friend who stated that it’s not that he doesn’t believe in God…it’s just that he’s not sure he believes in a benevolent God.

Hmmm…that was a new one for me. No God? Possible. God who wants bad for people? Much harder for me to grasp. (It’s the devil’s job to be bad, and God’s job to be good, right?)

So of course that started me thinking about the reasons I believe in a benevolent God. Not a God who steps in to fix things. Not a God who prevents evil. But a God who wants good things for me, even if I manage to muck it up much of the time.

I could list lots of things – snuggly children. (Could be preservation of the species. If they’re snuggly, you’re less likely to kill them.) A day with low humidity after a summer of 70+ dewpoints.  (Could be just random weather. Or more preservation of the species. If the humidity is down, I’m less likely to kill people.)

But the best I can come up with is my experience that there are no coincidences in life. That experience of the exact right person with the exact right experience, or the exact right wisdom, or the exact right piece of knowledge, showing up in my life at exactly the right time.

Like the time I was at a conference (at the ripe old age of 23) and confided to a man that I’d just met that I was thinking about going to business school but that I was scared to quit my job. And he said, “My firm just conducted a survey of the best business schools in the country and Kellogg came out at the top of the list. My daughter just graduated from there. You can go stay with her for a weekend in New York and learn more about it.” And then I did. (I’m sure she must have been ready to kill him for sticking him with a stranger in her apartment for a weekend.)  No coincidence.

Or the many times I’ve been searching for information…the times I was considering job changes and came upon just the right person with just the right angle on the situation. The times I was struggling with a kid issue and came upon someone who had faced exactly the same thing.

But the best example was on Sept. 11. 2o01, when we were stranded in London and I was so scared that I’d never get home, and I prayed for God to send me a sign that everything would be fine, and then I walked into the American Airlines office and standing in line ahead of me was the mom of one of Emma’s classmates who was stuck in London too. Emma changed schools soon afterward, so I only saw that mom one more time, several years later, when she explained to me that she too had prayed for a sign that everything was going to be ok, and then SHE saw ME standing in that line. No coincidence.

In most cases these people disappeared from my life immediately (or soon after) after our encounter. We didn’t stay in touch, or even pretend that we would. We just had a moment. Or a few moments. Or a few days.

Now, I know that I played my own part in these experiences. I opened up to the people in question. Shared with them what was going on in my life or in my mind at that moment. Invited them in to my life.

Do I believe that God picked them up and put them there? No. I don’t know how it happened. But I just can’t believe that it was random. For me, it was evidence.

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Today is my day

Earlier this year, I became aware of a blogging project called the 3six5, in which two self-described media geeks, Len Kendall and Dan Honigman, set out to create a 365-day blog, with a different author each day, writing about whatever struck them that day. When I became aware of it, there were still days available, so I signed up for a date. Which got changed at pretty much the last minute. So today was my day. Which happens to be my mom’s 85th birthday.

I was so nervous that I’d have writer’s block that I hardly slept last night. Technically, I had until 8:00 this evening to submit my post, but I knew that I would obsess about it all day until I got it done. So, fueled by coffee, I wrote and submitted my post. It’s not my best work, by any means. But it’s heartfelt and true, and represents what I’m thinking about today. On my mom’s 85th birthday.

Happy Birthday, Mom. Thanks to you and Dad for giving me a strong sense of what home should be, so that I could create a home here in Chicago.

I’m honored to have been part of this project. If you have time to read some of the posts, I think you’ll find it worth your time. There are many wonderful stories. Most better than mine. But for what it’s worth, here’s mine:

Deb Maue – the 3six5

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