Change is good

Good morning!

I'm changing things up here on the blog. I'm starting a new writing adventure and turning this site into what it was always meant to be--a chronicle of my breast cancer journey.

Every day I take another step away from the label of "patient" and it feels so good to be walking in that direction.

But at the same time, I'm finding new challenges that keep me inside the cancer circle. I'm becoming a resource for patients and families who crave information and guidance. It's flattering to be thought of this way, and I'm making other life changes that will allow me to be the resource I couldn't find when I started my own difficult journey.

So... look for musing and information you need in a new place, at pennywrites.wordpress.com. Over the next few weeks I will pick through this blog and delete posts that aren't related to the cancer journey. I'll pick up some of the best stuff I have here and transfer it over to the new place.

I hope you'll bookmark me twice. I've loved every minute of what this has been to this point. The cancer journey is ready to be published as a book. All I need to do it hit "go" and I'll be a published author.

Maybe taking this step will be the incentive I need to make that dream a reality.

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My friend Alice

It’s too late to call Alice and say hello. It’s too late to say goodbye.

My friend Alice O’Reilly, a most extraordinary lady, died last week. She was gifted leader in her community, her church, and at Holy Family Hospital in Methuen, an institution she loved with all her heart. Many people looked to Alice for guidance and encouragement and she was generous with both.

I met Alice when I was a reporter for the Eagle-Tribune and continued a telephone and card relationship with her after I left the newspaper. I made lots of promises to visit her over these last nine years and never followed through on one of them.

Life got in the way. There were things that needed to be done, whether real or perceived, and I never made the time to keep Alice closer to my heart. I spoke with her not too long ago and we talked about making a lunch date. It never happened.

I was in Washington DC last week when I stumbled across her obituary on the Boston Globe Web site. It took my breath away to read it and made me truly ashamed that I let a wonderful friendship slip away without knowing more about what was happening in my friend’s life.

I’ve since learned that she was seriously ill for some time. “I had no idea, she never said anything,” I said to the person who shared details of her death. “She wouldn’t have told you,” he said to me, “that wasn’t Alice’s way.”

I missed countless opportunities to keep Alice more an active part of my life. All I can be now is terribly sorry.


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On a related note, sort of, I let the entire summer go by and never kept a promise of a dinner date with my nephew Tom. He drove back to college yesterday, back to RIT in Rochester, NY. More opportunities lost… but a correction I’ll be able to make, if he’ll let me.

So, goodbye to Alice, who will always be in my heart. And a promise I promise I’ll keep to Tom the next time he has time for me.


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Happy Anniversary to Me!

Two years ago today I had my second breast cancer surgery. That led to the finding that it had spread to my lymph node. And that led to the decision to go into chemotherapy treatment. And that led to (among other things) going bald and coming back grey.

Considering the alternative, I wouldn't have missed a moment of it.

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Power to the Patient

I had an appointment with one of my breast cancer doctors today (I'm on a follow up plan with three docs--surgeon, oncologist, and radiologist, that involve appointments every three to six months. It's part of the plan and I'm good with that schedule.)

It's not unusual for two of my three docs to run late; I've had to wait has much as two hours for the oncologist... I don't appreciate being made to wait, who does? But you do what you have to do when you're in this boat.

So there I was this morning, doing a slow burn. I had a mental intervention and decided that I wasn't going to take it. I was the first appointment of the day and he was 30 minutes late.

When the medical assistant took me to the exam room, I asked her if the doc was in the building (I've learned through experience that asking if the doc is running late is useless, I ask if the doc is in the building).

She said he was not, and I asked her to find out when he'd be there. Actually I told her to go find out. She came back and said someone had him on the phone and that he'd be with me in 10 minutes. I told her, "Go tell whoever he's talking to to tell him that if he's not here in 15 minutes that I am leaving, with my copayment, and that I will expect a call from him with the name of the surgeon he will turn me over to, because I will be through with him."

She came back, having delivered the message. I apologized to her for speaking the way I had. I told her I knew it was not her fault and that I'd had no right to speak to her the way I had. She was gracious and so very kind. She deserved better than I'd given her. She smiled and said, "Don't apologize. This happens all the time."

He walked in a few moments later. And I gave him an earful. I never raised my voice and I did not get emotional. I spoke in an even tone.. and I let him have it.

I told him that, over the course of our nearly 2 1/2 year relationship, he has been late for every appointment. EVERY appointment. I have been on time or early for every appointment. I have done everything he has ever asked of me so that I could get and stay healthy. I said I was offended of his lack of respect for me as his patient (really, I said that!). I told him that I wanted him to understand how upset I was and that if he could not tell me when to make an appointment that he might be better able to make on time, I wanted him to give me the name of another doc and that I would take my "business" elsewhere.

I shocked the hell out of him. He was genuinely stunned. And very apologetic. He has laughed off some of my comments in the past, and I've never appreciated that, but I always took it. Respect for the doc and all that B.S.

I think it was calling him on his lack of respect that made him really get it.

Until the next time, I'm afraid. I honestly don't expect things to ever get better, but I wasn't going to smile on the outside and steam on the inside. Not again. I know there are emergencies but I expect and deserve some consideration and an apology when things fall off track.

Why do we let people in positions of power push us around like that? Doctors do this all the time... and it's so frustrating, particularly when you spend as much time at medical appointments as I've spent in the last two-plus years.

We all need to learn to speak up, but we need to be sure we speak to the people who have the power to make something work.

If you're ticked at your doc, don't lash out at the medical assistant or the receptionist. It's not their fault that the doc double books or runs late. These good people are the ones who bear the weight of our fussing and complaining. Be good to them.

Disclaimer: OK, I'm the mother of a medical assistant, a hard working, wonderful health care professional who has taken her share of crap from patients over the last couple of years. She helps me be a strong patient. I think she'd echo what I've said here. If you've got something to say, say it to the doc.

Stand up for yourself. Be your own advocate. Give hell when it needs to be given but do it with respect. Your health care needs to be about you and your needs.

You have the power. Use it.

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A special "Dad" message

Please take a moment and go to PeaceBang's site and read her wonderful Father's Day tribute to her Dad.

If your is here, I hope told him how much he means to you.


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Two Years... Fifteen Years

It was two years ago today that I got my breast cancer diagnosis. My, time goes so quickly when you are busy living it.

If I had to go back, I wouldn't do anything differently and that's a really good feeling—believing I did everything I could have done and did it right. Only the passing of more time will tell for sure.

And today is Father's Day! It was 15 years ago today my Dad had his last Father's Day. I hope he knew I offered heartfelt wishes and all my love on that day. And every day.

Share some Father's Day love today with someone special.

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I got great news today

It’s been a while since we walked down Breast Cancer Lane, but hell, let’s head that way now.

I got great, great news today. I underwent testing three weeks ago to see if I carry a gene mutation for hereditary breast and ovarian cancer.

I do not carry the gene. Most importantly—my daughter doesn’t have it.

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If you’ve following breast cancer news, you may have heard of the BRACA1 and BRACA2 genes. These gene mutations significantly raise your chances of developing breast and/or ovarian cancer. The routine “fix” for a positive test it to have a double mastectomy and ovaries removed. In other words, get rid of those places where cancer might develop.

Dramatic, eh??

With the history of breast cancer in my family (my maternal aunt and maternal grandmother), my doctors and PJ’s doctors have urged that I get tested. If I came back positive, she would be tested.

Since I came back negative, she doesn’t need to worry about it. She continues to have slightly elevated chance of developing breast cancer (somewhere in an early blog entry I mentioned her “chances.”) because I had it, but her chances are significantly lower than they’d be if she tested positive.

If I’d been positive, I probably would have waited until the breast cancer returned (if it returned…) and then had surgery. But young women who have the bad gene generally get on with having babies and then have the surgeries.

If I’d been positive, there’s a chance PJ might come back negative. It’s nicer knowing she doesn’t have to

I’m grateful that we don’t have to think about this, particularly for PJ. It would be a terrible burden to carry until she was ready to take action. And she’d wonder if she’d pass it along to her children.

All along this interesting sally I have said that I’m lucky. Lucky to have found it early enough, before it had a chance to do serious harm. Lucky to have rebounded. Lucky to have such a wonderful network of family and friends. Lucky, lucky, lucky.

Lucky again today. What great news!

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Happy Mother's Day

My baby and me. We walked the lake in Wakefield, went out for iced coffee, did a WalMart run, and it was all very wonderful.

It doesn't get much better than this!

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Back on the prayer list

My friend Gail (not my Gail of "...and Chuck" fame, my other Gail) needs to go back on your prayer list.

Apparently her brain cancer is making an unwanted return. Her current course of treatment is not working and it appears that a small nodule left from her original surgery is growing. Her Boston doctors offered a treatment plan, which was endorsed by Duke Medical. She and her family explored more options and have opted for surgery at Cedars-Sinai in Los Angeles this coming week, to be followed by possible participation in a clinical trial fora new cancer vaccine.

Please save a prayer for Gail and her family. Wouldn't it be amazingly wonderful if there really is a vaccine??

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Hello Amy!

Hello Amy,

I saw your Aunt Laura this evening (she's my husband's nutrition counselor). She said you and your mother have been reading this blog. I hope you've found an entry or two that make you laugh, give you some insight, or maybe just reinforced for you that the way you're feeling or the things you're thinking about are usual and customary for someone who is fighting the fight.

Amy, I hope you'll call me if you ever want to talk. I don't have mystical insight, I don't know the answers to all of the questions. I just know what it's like to be where you are right now.

The most important thing I learned on my journey was that the hard part of my journey came to an end. There was a very real moment in time when I stopped sliding down and started climbing again. And on the days when you feel low and sad and as unhappy as you can imagine you could ever be, I hope that in some small place in your heart you know that you'll start climbing again.

The fatigue will easy. Your hair will grow back. The aches in your bones will disappear. Until that day comes there are some things you need to do.

Nap when you are tired. Ponder when your mind needs to be busy. Take yourself for a walk when you have the energy. Find someone to listen when you need to talk. Find someone who will sit with you and be silent when you need quiet company. Insist on being left alone when you need solitude. Cry if you need to. It's OK.

Refuse to spend time with people who give you nothing but negative energy. Tell them to take their war stories and go away. Tell them you don't have the time, energy, or interest. People like that aren't really your friends.

Most important is to laugh when you can. Take notes (start a blog!) so you can remember these days and these feelings. Believe me, you won't remember the little things when the calendar puts enough time between today and months down the road.

I started my blog because I didn't want to forget any of the feelings. I want to be able to go back and read the entries. They remind me about how far I've come and they make me understand how uniquely personal this thing really is.

Cancer doesn't define me, Amy. It's not what I am. It's part of my past, just a part, and it's not what you are. You are Amy first, wonderful and stronger than something that's just that... something. It's not what makes you Amy.

So, give me a call if you ever want to talk.

Always remember, you're beautiful.

Penny

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