THE BOOK IS HERE!

My book is officially available at www.lulu.com (click for a direct link to the page) and will soon be on Amazon.com.

I'd love to come an do a reading for your group! Drop me a comment and let's talk!


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Another extraordinary woman

I met someone special yesterday, a beautiful baby girl named Grace.

She was baptized at church yesterday and our minister invited me to “receive” her on behalf of the congregation. When he concluded the ceremony he walked up the center aisle with Grace, stopping along the way to show her to the congregation. I was standing at the back of the sanctuary at the top of the aisle and he handed her to me. I walked back down the aisle with Grace and the minister, then stood with her family while the minister said another prayer. Then he turned to me and said, “OK, you have to giver her back now.”

Laughter. Wonderful laughter.

Every child is special. But this one is a little more so, I dare say. Her mother, Laurie, has been diagnosed with Ewings sarcoma and is putting up the fight of her life. She should be enjoying motherhood. Instead she’s having chemo, and lots of it. She says she feels good but she’s tired. I’m not surprised.

She wrote last night and thanked me for taking part in the service. She says she reads my blog and look up to me and admires my strength. She closes her signature with a quote from the blog:

"This isn’t easy. Not one bit. But we make it through because we are strong and we’re so worth the fight."

It’s not easy. For some it’s harder than it is for others. You know how I feel about my fight. Laurie’s, I imagine, is harder than I ever thought mine might ever be. I hope Laurie will be a lucky fighter, like I was. Like I am.

So this morning I’m thinking about Laurie and Grace. When she’s older Grace will be very proud of her mother. Right now they just deserve to have time to be together like all mothers and daughter should have. Time to do everything or nothing at all, whatever the spirit wants the day to be. Carefree and in the moments. Without chemo, drugs, doctor, worry and dread.

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Excellent news for a Cancer Sister

My friend Gail (my Gail with the brain tumor) got wonderful news today. Here is the message her husband sent:

"Gail had an MRI this morning at Dana Farber in Boston. Scan showed about 50% reduction in tumor from last scan 8 weeks ago. Same reduction both in temporal lobe (original tumor location) and in vicinity of optical nerve (where last scan showed tumor had spread).

"This is better than average result for patients like Gail who begin taking Avastin after recurrent tumor growth. FDA recently approved Avastin for recurrent brain tumors based on studies showing 26% of such patients having 50% or more reduction. Gail is pleased that she is in the group with such good results! We are all greatly relieved..."

Isn't that fabulous news? I'm so excited for Gail and her family. When you're walking the fine line, you look for every bit of good news. It carries you forward with a momentum that I just can't explain. You have to go there to understand.

Whatever. It's great news and that's the only thing that matters.

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A very difficult day for a BC sister

I got an email today from a friend of a friend who is going through a tough time with her breast cancer treatments. It’s an important mail to share. My response follows.

She wrote…

I haven't reached out prior to this because, for the most part, I've been doing fine....this weekend I've hit a wall. All weekend my stomach has been upset in anticipation of my first 4 hour Taxol treatment Tuesday (I've had 4 Adriomycin & Cytoxin doses thus far which were about 2 hours and now we are switching), and my husband just pointed out that it's not until next Monday that I have my chemo! this week is just a blooddraw to check my numbers....I'm feeling like a kid who doesn't want to go to the Dr's, I think if I was the one driving I'd be late constantly because I dread it so much...it's so much so that even though I don't get nauseous with the chemo meds, I actually get nauseous the day or 2 prior to chemo..it's all psychological but I can't seem to control it....and I actually have not had it that rough at all. My numbers have been great, I haven't experienced nausea or vomiting..all I've had to contend with really is heartburn and the hair loss...and I still have some hair (although I look like an old lady in need of her perm and tease!)

I'm just dreading the 4 hour treatments so much that I want to cry sometimes, and it's really not rational because they keep telling me how the AC was so much worse and if I made it through that the Taxol will be a piece of cake...Everyone says just focus on the positive, think good thoughts...I've been so positive all through this and I'm nosediving all of a sudden and I feel as though I should be soaring because I am halfway through and it's suppose to be an easier medicine but just can't get those wings to open and thus instead of soaring I'm nosediving.....

*********************

And I responded:

I'm glad you wrote. Sounds like you're having a just awful horrible time and I'm so sorry.

I think it's everyone's job to tell you how great you're doing and how the next step will be easier. It's their job to ell you to be positive and to think good thoughts... when all you really want to do it tell them all to go to hell. Am I right?

This isn't easy and it isn't a piece of cake. It's hard and it's difficult and it's no fun at all. You know it, and I know it and deep down inside a lot of the people who are telling you to be positive... well, they know it too. But being positive and upbeat is what they are supposed to do. It's their way of getting themselves through what you are going through. You have the hard job, enduring the treatment, watching y our physician shelf change, losing your hair and your appetite, feeling off balance and just not like yourself. Their job is hard too, because all they can do is stand by and watch all these crappy things happen to you and there is nothing they can do to stop or change it, so they put on the cheery face and try to be positive and happy.

I did the same two drugs, A & C, four treatments, three weeks apart for the first three and then two weeks between treatment three and four. That last one was MISERABLE! My treatments took about 3 to 4 hours at a time. I didn't do Taxol (I think that's a drug given to women who have no yet gone through menopause, but I could be wrong...) So, you're waking a path I didn't have to go down. I can't relate exactly to the Taxol, but I hear you LOUD AND CLEAR on how hard this is and I understand how much you really don't want to continue. But you really have to, and I know you know that.

Seriously, I'd ask your doc if there is something you can take before your treatment that will relax you a bit. Seriously... My doc told me the offer was on the table, if I ever needed anything to get into and through treatment.

Here is one other thing. You say you are nosediving. Don't beat yourself up over that. You are entitled to have low points. You can't expect to be on top of your game all the time. You need to allow yourself the time and opportunity to withdraw and just be inside your own head for a little while.

My advice would be to NOT focus on the feeling of nosediving versus soaring. Can you give it another name? Maybe instead, think of it as having strong days and not-so-strong days. Great days and not-so-good days. It's a game of words, and certainly the rotten days are just that... rotten. But call them something that's not so daunting. How about if you call a good day by your favorite dessert name, like, "Today is apple pie!" and call a bad day by something you really don't like as a dessert, like, 'Today sucks like green jello."

It's word games, but they help you over the hump.

One more thing... and this is really important. When I was at your point in treatment (just done with my four A & Cs), I was worried (truly) about my mental health. I felt like I was off my game, a step or two behind everything, not sharp, not focused. Do you know what I mean? I was SO worried that I was never going to get back to being myself, that I would always feel out of touch and fuzzy.

That didn't happen. I got myself back. I got back my focus and my clarity. I honestly feel stronger and more collected that ever. Really, I mean that. I am NOT just saying this to help you over a rough patch. It happened for me. It will happen for you.

This uncomfortable place you find yourself in is normal and natural and to be expected. The most important thing you can do right now is accept that it's OK and normal. The next most important thing for you to do is to reach out and ask for some help getting through it. You took the first step when you wrote to me for some help. Now you need to take another step and call your medical team. Ask your doc or your nurse at the oncology center for some guidance on what you can take to help you relax as you get ready for your next treatment. Call them tomorrow.

And stay in touch with me. I'm really glad you wrote.

********************

This isn’t easy. Not one bit. But we make it through because we are strong and we’re so worth the fight.

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Save 10%

How cool is this? My publishing house sent me a coupon code worth 10% off any purchase on their Web site! When my book is ready I'll share and you'll be able to save a whole $1.29 (I anticipate a price of $12.95, wicked cheap, I'm sure you'll agree).

And on a side note, a portion of the proceeds will benefit the Winchester Hospital Breast Care Center. I am going to ask that any donations be used to provide mammograms for women who do not have insurance coverage.

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The Journey is now A Book

Well, I did it. I've published my breast cancer sally book.

I hot "go" on the publisher's Web site last night and ordered a printer proof. I'll have it in about a week and will mark up and changes I want to make, and then release it for distribution.

It will be available through places such as Amazon.com and for book stores to purchase for sale.

This is an exciting moment. I'll keep you advised when it's available.

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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.


~~~~~~~~~~~~~~~~~~~~~~~~~~~

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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