I'm not in a brave mood tonight

Your intrepid patient lost her cool today. I've been sailing along in high gear, telling anyone who asks that I'm ready to get into whatever it is that's coming. Well, today that didn't seem like such a good idea.

I had a phone consult today with a member of the Winchester Hospital pre-admission team, a very nice woman named Harriet. (Because I had surgery there last month, I was able to do a phone pre-admit for Monday's surgery. Yesterday I had blood work done at the lab in Reading).

So I'm on the phone with Harriet, feel confident and a bit cocky, and she started to talk about how I'll spend some time in the nuclear medicine department in prep for the sentinel node biopsy (injections of radioactive material and blue dye, which I'm told stains the skin and take a few days to pass through my system--leaving in a colorful stream). Before I'm taken into surgery we have to wait for that radioactive material to slide through my body, through the breast and off into the lymph node system under my arm. During surgery my doc will use a Geiger counter to determine which nodes to harvest, all to be sure none of those nasty little cancer cells took a trip of their own.

(Radioactive matter. . . would I set off alarms at the airport? In Seabrook? Glow in low light situations?)

Harriet interrupted my racing thoughts, asking for the name of the person who will drive me home (Dave), a phone number where he may be reached, ran through the "do" and "don't" list, and offered to have someone call on Tuesday to see how I'd be doing. "How does that sound?" she asked cheerily.

By the time she was through explaining exactly what to expect I was ready to cash in my plane ticket and take a bus someplace else. She made it sound so officially real. I couldn't get off the phone fast enough.

Poor Harriet. It's really not her fault that she completely freaked me out. I had myself a good cry.

I guess no one has an easy job through all of this. Most of all not Dave and PJ, who get a pair of front row seats to my misery (assuming it's miserable). Not family, who get to fret and worry. Not friends, not coworkers, not the healthcare teams. And certainly not me.

There. I said it. I'm a little skittery about this. Dave looks at me and smiles with kindness and love (just like I know someone else would do if he were here today). He reminds me that I've already done this one, just weeks ago, and I came through it just fine. He reminds me that he leads the support team, with PJ as his VP, and that everything is going to be fine.

He's right. I can't avoid this. I can handle it. Compared to what some others go through, this is easy. I'm lucky.

I just needed to give myself permission to be a little selfish today.

Special "Thank You" shout-outs today to Angela, Bill, Jenn, Kerri, Diana, and Gina.

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35 days and counting

It's been 35 days since I got the news that my biopsy showed DCIS. And these have been extraordinary days, no question.

I've learned quite a lot about people in the last few weeks. Some surprised me, not with the fact that they wish me well, but with the depth of their feelings and demonstrations of care. I've been surprised by hugs, warmed by cards and messages, and showered with promises of prayers.

One person chose to tell me cancer "war stories" and I told that I just don't have time in my life for her negativity. I was proud of my reaction; I've wanted to say that for a long time and never had the courage to--I feared--hurt her feelings. This seemed like a good time, and I felt the weight leaving my shoulders.

I'm far from perfect. There are plenty of things about myself that could use change, but I'd like to think I'm basically kind and considerate of others. You reinforce those impressions with the kindness you're extending. I find myself thinking of and paraphrasing another Sally: "You like me! You really like me!" (Sally Field, 1984 Academy Awards presentation, Best Actress)

There may not be much to report until we get closer to August 6. There is still a very long way to go and there will be a lot to say and share. Thanks for coming along on the ride.

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Don't believe everything you hear

I won't get the quote right so I won't try. Rumors that my condition is grave are absolutely false.

I heard from a friend today, who heard third hand that my condition is serious. Poor guy... he called earlier this week (twice to the house and once to my office), and got no answer to any of his calls, and worse, no return call from me until this afternoon.

Little did he know I was in Maine, and little did I know he thought I might already by "gone."

Not quite, not by a long shot. I'm fine and ready to get going with surgery and radiation. The "fun" starts in two weeks.

For now, I need to unpack from a week away and gt myself into a work frame of mind. That sound you hear is a deep sigh.

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Hello, I’m your radiologist

Today Dave and I met Dr. Richard Heidbreder, the man who will lead the team that will direct moments of radiation at me, five days a week, for six weeks starting sometime around Labor Day.

Really, just moments of radiation at a time. It’s the set up that takes time.

Once again we reviewed where I’ve been, reread the pathology, discussed the prognosis, (which remains hopeful), and talked about what I can do to get ready (nothing, really).

I like Dr. Heidbreder’s welcoming and warm manner, his attention to my questions and comments, and (don’t laugh, this is important to me) the fact that he made and held eye contact when he talked. I felt respected and so much more than just another case.

Dr. Nath’s office also called today; surgery will be on August 6. That is what will push the radiation start out to Labor Day (which means the “It’s Over!” party will have to be rescheduled).

It all sounds reasonable and at the moment, I don’t have a concern in the world with regard to my health.

The Team is complete, at least its leaders are in place. Soon I'll get to know the nurses, technicians, and other specialists who will help me carry out the next steps in the process. I'm sure they'll all be wonderful.

So I’m stepping out of my life for a couple of days and heading to Maine. Don’t miss me while I’m gone.

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Y-ME?

If you have been touched in any way by breast cancer you have to check out this Web site: www.y-me.org (click the link at bottom right). I’ve already found lots of great information, downloaded files, ordered brochures, and tonight I signed up for a free audioconference from their ShareRing Network Teleconference series.

This call takes place on the 18th, and the topic is “Caring for the Caregiver: When a Family Member or Friend Has Cancer.”

My coworker Beverly told me about the Y-Me Web site. She discovered it last summer when her father was diagnosed with breast cancer. He had a mastectomy and chemotherapy and is doing very well, working on his golf game and no doubt enjoying the love of Beverly’s three beautiful little girls.

I’m grateful she shared this wonderful resource with me and happy her father is well.

So, what are you waiting for? Go check it out!

Happy Friday the 13th!

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Better Than Yesterday

Yesterday was the pits. Could you tell? I can’t go into everything just yet. When I can, I will. In the mean time, let’s talk about me. Hey, it’s my blog.

Saw Dr. Nath today but not until I’d had seven (count ‘em, 1-2-3-4-5-6-7) mammogram films taken. Holy &^%$#in’ crap, it hurt like never before. Turns out my team needs a series of new baseline mammogram views. Shots of what I look like without that bad pocket of junk in my breast. Had someone taken two minutes to explain what and why they were doing these I wouldn’t have been half as upset.

Bottom line, we’re on track as previously discussed. More surgery, radiation, drug therapy for five years. Still a wide outside chance we’ll need to talk about mastectomy or chemotherapy, but those are real long shots and I’m not going to worry about either.

(If I have chemo, I’m cutting my hair short and letting the grey grow in. Even though I’m worth it, I’ll happily sever my relationship with the good folks from L’Oreal.)

(I’m smart… those baseline mammograms taken today will be null and void following the next surgery. We’ll have to baseline again, and I’ll be hurting again, and fussing at you again about how awful it was. I’m warning you now).

So what’s next, you ask? A meeting on Monday (7/16) with my radiologist, Dr. Richards Heidbreder. I’ve already made a list of questions and will probably come up with a few more between now and then. Then surgery. I’ll have a date in the next day or two.

I actually found a three-ring binder and am keeping copies of all of the paperwork associated with this sally, things like appointment slips, test and biopsy results, and the like. There’s a notebook tucked inside, where Dave and PJ can add their queries to my list of questions. That way, no one’s concerns are forgotten when it comes time to sit down with the medical types.

Speaking of sally, my coworker Bryan and his wife Jamie found a small statue of Sally of “Charlie Brown” fame (she’s Charlie Brown’s little sister). She’s wearing a warm smile and has outstretched arms, as if she’s ready to gather me into a hug. She’s my little mascot as I write, camped right here by my keyboard.

Thank you, Bryan and Jamie, I love her!

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Some days are better than others

Sometimes the day just doesn’t go the way you wanted it to, the way you planned to have it go. Today is a good day for “sometimes.” Mark Knopfler (“The Bug”) says it pretty well:


Well it's a strange old game - you learn it slow
One step forward and it's back to go
You're standing on the throttle
You're standing on the brakes
In the groove 'til you make a mistake

Sometimes you're the windshield
Sometimes you're the bug
Sometimes it all comes together baby
Sometimes you're a fool in love
Sometimes you're the Louisville slugger
Sometimes you're the ball
Sometimes it all comes together baby
Sometimes you're going lose it all

You gotta know happy - you gotta know glad
Because you're gonna know lonely
And you're gonna know bad
When you're rippin' and a ridin' and you're coming on strong
You start slippin' and a slidin' and it all goes wrong, because

Sometimes you're the windshield
Sometimes you're the bug
Sometimes it all comes together baby
Sometimes you're a fool in love
Sometimes you're the Louisville slugger baby
Sometimes you're the ball
Sometimes it all comes together baby
Sometimes you're going lose it all

One day you got the glory
One day you got none
One day you're a diamond
And then you're a stone

Everything can change
In the blink of an eye
So let the good times roll
Before we say goodbye, because

Sometimes you're the windshield
Sometimes you're the bug
Sometimes it all comes together baby
Sometimes you're a fool in love
Sometimes you're the Louisville slugger baby
Sometimes you're the ball
Sometimes it all comes together baby
Sometimes you're going lose it all

{Editor's Note: It's got a good beat and you can dance to it}

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Show of hands...

… who feels old? Anyone besides me? I had lunch today with a lovely young woman, Jen Paris, my Nephew Tom’s girlfriend.

Gawd, I remember the day he was born. That’s what you say to people you discover are quite suddenly grown up when you assumed they’d still be operating with training wheels. So I feel old when I look at Nephew Tom and see a young man serious about his future, heading to college, hell—talking and thinking like an adult. When did this happen? He has an older brother, Nephew Ted… Ted is old enough to be legal and recently shared a bottle of alcohol with me (which I still need to replace, I really haven’t forgotten, #1).

When did the two Nephews grow old enough to have girlfriends?

Jen and I made the date last week when she admired a bracelet I was wearing. It’s called a “Mel’s Bracelet,” a multi-colored bead bracelet sold in honor of a Mel Simmons, who died of breast cancer. She gave bracelets to her oncology nurses and other patients. After her death, her friends began a foundation in her honor and sell these beautiful bracelets t raise money for cancer research.

I’ve been wanting one for a while now, and the news I got on June 21 cemented the want into a need. I found mine last weekend at The Hitching Post in Reading (Massachusetts); I bought two and gave one to my mother. Jen saw mine and wanted one of her own. So we made a date.

We went back to The Hitching Post today. She bought four and I picked up two more.

I wouldn’t presume to ask you to buy one. The causes you support are your business. But should you be curious, check out www.melsbracelets.org. Shops that sell the bracelets turn over every penny of your purchase to Mel’s Foundation. To date The Hitching Post has sold nearly $90,000 in bracelets. Not too shabby for a little store in Reading. Not too shabby at all.

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There are no guarantees

The apparent good news keeps coming—Tuesday’s MRI is clear. At least that’s what one of the nurses at the breast center told me today. I’ll believe it next Wednesday when Dr. Nath tells me it’s clear.

When I called for results of the May 2 stereotactic biopsy I was told it was negative. Then, when I went for my follow up with Nath, he said it was negative for what they went in for, but showed two other problems. So it really wasn’t negative. So is this MRI really clear? I’ll wait until Wednesday to be sure.

The Pessimistic Me tells me that this will never really be over, never really be completely and totally gone. I’ll sweat and fret every mammogram for the rest of my life (more so than I do now).

The Optimistic Me tells me that all of the preventive measures to date—such as timely mammograms—have paid off. I’m in a good place and headed in the right direction.

The next big wait will be the results of the sentinel node biopsy. The Optimistic Me says, “Hey, you’ve been OK to this point, why think that might change?”

We’ll wait and see. But I’m not going to sweat and fret quite as much as I might have.

Next stop: Dr. Nath on Wednesday.

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The MRI and Drug Decision

Had my MRI yesterday. An uneventful event. We just have to wait for the results and hope everything is clear. It will be nice to know that there is only this one area that needs attention. I’m not in the mood to have anyone find suspicious cells in another spot or in the other breast. Right?

Dave and I met with the oncologist yesterday, Dr. Beverly Bowker. She’s very enthusiastic; she said that when she read the reports she looked forward to working on my case (because of the early stage and the apparent ease with which this should be handled and completed). I always knew I was easy.

Anyway, she walked us through the pathology report, and I’m glad she did. Dr. Nath did the same thing a week ago, but I think the information was too new and fresh, and still a little scary at that point. We’ve had a week to think and research, and it’s easier now to translate the information and process it.

Dr. Bowker’s role is to determine what drug/s I will take following radiation and to monitor that portion of treatment. I will be on drugs for five years and under her care for an additional five as precaution.

She is looking into two kinds of drugs:
• Estrogen blocker such as Tamoxifen
• Estrogen decreaser such as Arimidex (other brand names include Femara and Aromasin)

Because of my age (53, “You’re young!” she says), she is leaning toward Arimidex. Apparently I’m cranking out estrogen and she wants to slow that significantly. But because I also have a history of pre-melanomas, she says she can’t rule out the Tamoxifen.

Both kinds of drug will prevent recurrence and prevent new breast cancers. Both encourage hot flashes (yea!), blood clots in smokers and older patients (remember, she says I’m young). Tamoxifen can lead to cataracts but decreases cholesterol and prevents osteoporosis. It also leads to liver cancer in rats (but so do bacon and Coke). Arimidex increases cholesterol and the risk of osteoporosis (a recent bone density test shows I have no such worries at the moment).

One hand gives, the other takes away. Decisions, decisions.

There is a third drug she is looking into for me, Tykerb. That’s appropriate because the pathology showed my HER-2-NEW level amplified at +3 as well as a pathology level of III, which is more aggressive. (I’m not 100% clear on this; I’m reading right off her notes and a copy of the pathology report—my healthcare savvy friends will understand.).) She didn’t necessarily seem concerned about this, but made the point of making the point, and based on the rest of the consultation, I interpreted this as something she needs to give careful consideration.

As I am with Dr. Nath, I’m comfortable with her and with the plan as it stands at the moment.

Yes, I have the pathology report. I know I’m entitled to have it, but I wonder how many people ask for theirs. Working in healthcare publishing has given me a little insight into my rights as a patient, as well as sympathy for healthcare workers and facilities that I’d never have otherwise.

So that’s what’s new to this point. It’s July 4, Independence Day. My oncologist refers to me as someone who “had” breast cancer. At the moment, that’s my favorite kind of independence.

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Past tense

Met with my oncologist today. She says I "had" breast cancer and always referred to it in the past tense.


And you know what? She's right. The biopsy showed complete excision. So I don't have breast cancer, I had it.

Still, I need to learn the outcome of this morning's MRI to be sure it's not hiding anywhere else. And I still need to have that additional surgery, and radiation, and five years of drug therapy to make sure it never comes back. Beats having the disease, right?

And Dave got a new job today... icing on the cake.

More later.

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An apology (sort of) to Elaine and the rest of you

“You’re probably wondering why I called you all here today.” (Ha! I’ve always wanted to say that! It’s an expression my father used, and every now and again I find myself finding good use for a Bruce-ism.)

At any rate, there may be a need for an apology. Seriously (another Bruce-ism). I went and told you I have breast cancer. I handed you a bomb. Tag, you’re “it.” You get this life-changing, heartbreaking, devastating piece of information. Then what do you do? What’s the right thing to do? What’s the right thing to say?

It’s brain overload. It’s too much to think about. How cruel of me to do that to you. I’m sorry. Seriously.

My friend Elaine doesn’t realize what she did, but she pointed out the cruel thing I’d done when I told her about my situation. She took ten days to respond to the e-mail I’d sent with the news.

Elaine wrote: “I have been sitting on this email - its one of those ‘What do you say?’ things. ‘Sorry it’s you’ sounds so ineffective!”

So there was Elaine, sitting home in Connecticut with her husband, two adorable kids, a new puppy, her elder Gram, all of whom require (rightly) and deserve (rightly again) all of Elaine’s love and attention (and she gives it so freely and with such wonderful, joyful enthusiasm). And she’s got my bomb in her inbox.

It took her ten days to figure out what to say. Ten days for a woman who has no trouble with words to come up with ones that sounded right in her head and felt right leaving her fingers for the keys. I bet she read her reply e-mail a couple of times and even edited it before she hit “send.”

(She’s so good with words that I told her she should start her own blog. Nori and Joey would be instant blog darlings).

I was left with one reaction: how could I have done that to my friend Elaine? So I’m apologizing to Elaine, and to everyone else.

I told Elaine and the rest of you about my breast cancer because I wanted you to hear it from me. I want you to believe me when I tell you that it’s early in the game and I’m confident of a good outcome. I have great people on the treatment team and I’m ready to get started.

Every single person who has reacted to the news has done so with concern and respect. I’d never be able to take advantage of all the wonderful offers of support and the countless “…if there is anything I can do, just ask!” messages. Some have said “Call! I’ve been there!” Elaine offers the solitude of her deck and a pitcher of margaritas. Hey, who’s up for that! It’s probably a big deck!

So I told you because I need you to know. You really don’t have to do anything with the information, I just need you to have it. I know you’re sorry to hear the news. It’s OK to share Elaine’s, “Sorry it’s you” reaction. It’s OK to think, “I’m so glad it’s not me.” Even though that kind of thinking turns quickly to guilt, it’s really OK to feel that way. I won’t ask for a show of hands.

It’s my sally, and I’m thrilled to have the growing number of people traveling with me. Let’s agree to check in with each other every now and again and see how it’s going. Make sure you tell me about you. This shouldn’t be all about me. I can be selfish like that sometimes and I need to remember to listen and not do all the talking. I’ll count on you to remind me.

Today is MRI and Meet the Oncologist Day. I’ll fill you in later.

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Life is good and I'm lucky as hell

There is no reason to complain. For the moment, as the t-shirt says, life is good. Good friends, good job, good times. I have only few “needs.” I have a long list of wants (don’t we all?)

On the “need” list are:
• a healthy outcome
• optimum health and happiness for everyone else

How idealistic, eh?

On the “want” list are:
• to get started and have it be done
• a housekeeper
• someplace to go with my new passport
• to visit my re-found friend Jan from South Carolina (we’re already talking about Washington DC next spring)

That’s just a few things. It’s interesting how the “want” list has changed over the last few months. I’m sure it will change again, many times. It has to, doesn’t it? Wanting is part of what makes you move forward through the day. I know someone who seems to look forward to nothing, who seems to expect little more than to be disappointed by life. It’s pretty sad. I couldn’t live that way.

So, for now, life is good. Tuesday is MRI day followed by a meeting with my oncologist.

Wow, I have an oncologist. That's scary. I remember another ramble, 12 year ago, in which I wrote that I had (among other things) five selectmen, an auto mechanic, a letter carrier, hair dresser, boss, and so on. Now I have a surgeon, an oncologist, and a radiologist. Great people to know, I'm sure, but in the grand scheme of things and quite selfishly, people I'll wish other people "had."

These are the kinds of ah-ha moments that remind me of how lucky I am. Lucky to have breast cancer? No way--and I wouldn't wish it on anyone. Instead, lucky to be living in an age where technology finds these things early. Lucky to have a job and good health insurance that allows me to have and make choices. Lucky to work with a terrific group of people who are respectful of the situation and supportive to share their time and talent to make sure the work will be done right and done on time. Lucky to have so many friends who care about me and my family. Luckiest most of all to have Dave and PJ on sally with me.

Hey, I’ll keep you in the loop. Go play in the sunshine.

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