Male breast cancer survivor Peter Devereaux shares his story

Things have been moving at crazy pace lately as we continue to launch From Incurable to Incredible. I’ve been preparing for the TV appearance this weekend, as well as a radio interview on July 6 at 2 p.m. with Bill Cunningham on WLW 700-AM in Cincinnati.  In related news, Joseph Beth Booksellers will start carrying the book in Cincinnati, hopefully by this weekend.

I think I need some pointers from Peter Devereaux, who is certainly no stranger to media attention.  Peter, a 48-year-old breast cancer survivor who lives in the Boston area, has been on CNN and interviewed by newspapers like the Chicago Tribune to spread awareness  about male breast cancer and what he believes caused it.

Peter is one of 60 men with breast cancer from Camp Lejeune Marine Corps Base in North Carolina . They found the water at the base was laced with trichloroethylene, TCE; tetrachloroethylene, PCE; benzene; and other volatile organic chemicals. Peter believes this is the cause for his and the other men’s cancer. (For more information on the male breast cancer at Camp Lejeune,  go to www.TFTPTF.com.)

I’ll let Peter tell his amazing story:

My Breast cancer journey started  on January 11, 2008. I woke up in the morning with a good-sized lump in my chest as my hand bumped into it. At that point in my life,  I had no idea men could get breast cancer.

I contacted my doctor and received a mammogram and ultrasound followed by a core biopsy. The doctor called me to let me know I had an aggressive form of breast cancer. It was the first time I knew I had breast.  

We then went for a second opinion at Dana Farber Cancer Institute in Boston, MA.  I would always recommend getting a second opinion!   I had mastectomy on my left breast and had 22 lymph nodes removed. They were all cancerous.

I started a 14-month program including chemotherapy, radiation and a clinical trial with the drug Lapatanib. My doctors let me know the severity of the disease and the probability of it coming back were strong.

Thirteen days before my treatments were scheduled to end, I started having shooting pain down my spine. Tests confirmed the cancer had traveled to my spine, rib and my hip.

The average life expectancy for my diagnosis is two to three years, but I will never give up or give in. I am continuing to work on bringing education, awareness and research to male and metastatic breast cancer. I will never give up or give in. I continue to search for a cure..

This whole journey has been humbling to say the least. It’s such a weird deal not only to have cancer, but to also have a women’s cancer. My family and friends bring me constant joy, especially when I see my wife and daughter smiling.

I also do a lot of outreach. When I was first diagnosed, I looked for a man with breast cancer and could not found one. I try to be that guy and the face of male and metastatic cancer and feel this is the reason I have breast cancer.

Constant treatments and surgeries wear me down, but I focus more of on what I have than what I lost. I will remain passionate and continue to be involved. I hope to see a cure in my lifetime, and lead a long, meaningful life.

My first TV appearance: Plugging From Incurable to Incredible

Don't change the channel! From Incurable to Incredible gets a plug on TV.

Things have been busy coming back from vacation, so I’ll keep this short and sweet. I was feeling scattered and stressed this morning thinking of all I need to do, but am in a much better place now.  One thing that helped was a call from from fabulous husband  Mike, a fellow public relations pro who knows a thing or two about getting publicity.

While we were getting things done around the house this weekend, Mike emailed a couple of local news contacts about From Incurable to Incredible. Thanks to his efforts, I’ll be on Channel 9, WCPO Cincinnati this Sunday morning, July 4, around 8:30 a.m. or so. Janelle Walton, the morning anchor is interviewing me about the book.

When I was doing PR for hospitals and other health care organizations, I always made sure someone else was in front of the camera – a doctor or other topic expert. I’ve been caught on camera in the background of press conferences I’ve organized ,but never have been the one to do the talking. So this will be the first time I’ve been interviewed on TV.

Of course, the first thing that comes to my mind is that the camera adds 10 pounds and how will my pores and wrinkles show on camera. Yes, vanity strikes!  But I’m trying to focus on my higher purpose: to get the word out so someone who really needs some hope and inspiration finds out about the book.  As I know, these segments are short, so let’s hope there are some early birds out there watching!

I better get my “you know what” in gear now to drop off the book at the station and pick up my daughter from her day camp. Until next time!

Vacation tips…and some early reviews of From Incurable to Incredible

Sunset in front of our cabin at Willowood Camp

Hello from beautiful Rice Lake in Ontario, Canada! There is a beautiful breeze blowing right now. Chrissy is sitting at the table beside me on our deck and Mike is snoozing away on our dock after getting up at 5 a.m. to go fishing, taking a long, hilly walk with me, and going kayaking.

If you are looking for a great family vacation, I’d highly recommend the place we’re staying. It’s called Willowood Camp. The cottages are really cute, and they’re right on the lake. They added a game room with ping pong tables, air hockey, darts, a pool table, and even a kareoke machine.  This has been great for rainy days and times when we’re not catching a bunch of fish. Mike’s dad has been coming to this lake for 40 years because the fishing is so awesome.

The best time to come is in June before the kids get out of school (they get out next week in Canada!) We’ve got the run of the place now.  The owners are very nice and extremely accomodating.

 I’ve received some beautiful comments from people who have already finished reading  From Incurable to Incredible.  Kelly, a fellow Pink Ribbon Girls member left me the sweetest message on Facebook saying that she could not put the book down, calling the book, “amazing.”  I woke up feeling a little anxious about the book, and her comment really made my day.

 I am eager to hear what you other people think of it after you read it and if you could, leave your comments here and on Amazon. Yes, if I didn’t already announce it, From Incurable to Incredible is available on Amazon too. I really think word-of-mouth is the best promotion.

Hope you are all enjoying your Wednesday wherever you are. I am sure enjoying mine. Have a great day, eh!

De-stress beats distress

We see sunsets like this every night at Rice Lake.

One of my biggest fears used to be public speaking. The past couple of years, it’s been stress.  The more I research, the more I learn how stress breaks down your immune system. We’ve all experienced it.  You go through a stressful, busy time and what happens? You’re more prone to getting sick. From my experience and reading, the same goes for serious illness like cancer.

According to the book, Anti-Cancer, and several other ones I’ve read, we all have cancer cells in our bodies. But most of us keep that at bay with a healthy immune system. Now, I’m not saying there aren’t other factors involved, such as a genetic disposition or certain carcinogens like smoking. But stress is a factor.

When I have consulted with a naturopath or other holistic doctors, the first thing they ask is if there was a major traumatic or stressful event going on in my life prior to my diagnosis. When I was first diagnosed with breast cancer in 2002, my dad was dying. The second time around, I was in an extremely stressful job that had in me in tears when I first started.

So I became worried when I started getting into hyper-mode launching From Incurable to Incredible. I could feel my muscles tense, the headaches, my agitation rising. Adding to the stress was getting ready for our vacation, a wonderful thing but always stressful to me in the preparation.

We left Friday for our annual trip to Rice Lake in Canada. (Attention would-be burglars, a friend is watching our house!) I could actually feel the tension melting from my body as we drove through the beautiful countryside. And here I sit on the deck of our cabin, looking out at this magnificent lake with the gentle breeze blowing through my hair. I feel like a new person, and I know my body is benefiting from it, as well.

Now my challenge is to remember to relax when I’m not on vacation. I encourage all of you to take  a mini-vacation every day. I sometimes will think of this lake and breathe deeply. Or I’ll go out on my porch of the house and just listen to the birds chirp. My yoga class is another way I can take a break and establish some calm in my life. And if you can, getting away on vacation is a great way to gain some perspective. Whatever works for you, as Nike says, just do it!

Green cleaning: good for you; good for the earth

Green products will help you breathe easier.

Last month, I posted about the government panel’s findings about chemicals in our environment as it relates to cancer. According to the panel’s findings, there are 8o,000 chemicals  in commercial use, but federal regulators have assessed only about 200 for safety.

Pretty scary huh? There are things we can’t control, but there are plenty of ways we can reduce the chemicals we use in our homes and on our bodies. I’ve been buying green personal care and cleaning products for a couple of years from various places like Aveda, Whole Foods, Trader Joe’s and Kroger. I recently found out about a company called Melaleuca, which has more than 300 different products they can deliver to your home.

I agreed to try to their Spring Cleaning collection, which included their: tub and tile cleaner, stain removing solution, all-purpose cleanser, furniture polish and glass cleaner. I am disclosing I received these products for free, but I’ll give you my objective opinion.

Everything is concentrated, so I had some mixing to do in the spray bottles provided.  The thrifty environmental side of me liked that this uses much less plastic and that I’m getting more for the money. The lazy side of me led me to procastinate doing this.

The products worked very well. I was especially impressed with the Sol-U-Mel stain remover, which eliminated an ink mark from our recliner. It also worked well on our white, stained kitchen sink with a little help from some baking soda. Their Rustic Touch furniture polish  and Tub and Tile cleaner also did a nice job compared to some others I’ve tried.

The company has a whole line of products, including personal care, supplements, pet care, and beauty products. You save the most money from becoming a preferred member, which my representative Janice Teeter (a breast cancer survivor, too) says 95 percent of their customers do.  For instance, Tube & Tile, which makes six bottles,  is $5.69 for members. Six bottles of a comparable non-green product would cost $23.94. 

I was about to join but was a little intimidated by the membership requirements. You need to spend about $50-$60 per month to get the member benefits. It’s a good deal if you intend you use a lot of products. In addition to 30-40 percent savings, you can get up to $100 in loyalty dollars and 15 percent savings at online retailers. We have a small house and only three in our family, so I didn’t see myself spending that much. Also, I get my supplements from my doctor. I’m going to just order products as needed and enjoy more modest savings.

But I do think a membership would be ideal for a larger family with more square footage to clean and who is willing to commit to purchasing their wide range of products. And I’d highly recommend it for busy working mothers who’d enjoy the convenience of having them delivered to their homes.

For more information about Melaleuca, visit http://www.melaleuca.info/.

Party!! If you’re in the area, you’re invited.

It will be fun, I promise!

Do you live near or in the Cincinnati area? If so, you’re invited to attend our Book Signing Bash on Saturday, July 31!  The party begins at 7 p.m. at the Sycamore Senior Center, 4455 Carver Woods Drive; Blue Ash, OH 45242.
To RSVP, go to this link to our Evite.

Trouble ordering From Incurable to Incredible online?

Never fear! There are lots of ways to order From Incurable to Incredible!

Hi all; sorry for all this promotional banter, but as you can imagine, I’m excited about getting From Incurable to Incredible out to the general public.

I’ve had a couple of messages from people telling me that they are having trouble ordering the book at the link I provided: https://www.createspace.com/3435593. Like Amazon and other sites, Create Space requires you create an account to purchase from them. No need to sign up for anything; just give them your payment and shipping information.

If you feel totally uncomfortable ordering online, you can purchase books directly from me by the end of this month. Simply fill out the contact information sheet on this site with your shipping address and how many books you want.  I’ll contact you with the address to send your check for $17.99.

And finally, if you live in the Cincinnati area, you can purchase one from me in person at my book launch/signing party on Saturday, July 31, 7 p.m. I’ll send out more details soon about that soon, but I would love for all of you to mark your calendars. It is going to be a great time!

At long last, From Incurable to Incredible is available!

Me with the first finished copy of From Incurable to Incredible: Cancer Survivors Who Beat the Odds

It was almost two years to the date that I received an “inner nudge” to write a collection of stories of cancer survivors who, despite a grim prognosis, beat the odds. Well finally my “baby” is born!  I came home today to this shiny proof copy. I approved it and now it’s released for the general public.

 You can order From Incurable to Incredible: Cancer Survivors Who Beat the Odds online right now if you’re so inclined. Just click on this link, and it will take you to my publisher’s e-store: https://www.createspace.com/3435593. Feel free to pass it along to anyone who might be interested.

I think this is cause for celebration! I’m asking Mike to take us out to dinner tonight. No cooking for me!

 Thanks to all of you for your continued support!

Ahhh, massage! The benefits of oncology massage

Massage is good for more than just pampering!

I have always loved a good massage. When I was single, I’d get one every month. Once I got married and had my daughter, they became a luxury I’d receive as birthday and holiday presents.

Since I was diagnosed with cancer, I’ve been a bit nervous about a well-meaning practitioner “rubbing me the wrong way,” (excuse the pun). I have some lymph-edema and have always been afraid of making that worse, and I still have a port, which can be tender.

Recently I found out that a wonderful organization here in Cincinnati, Cancer Family Care, offers half-priced massage for cancer survivors. I went Friday and received a wonderful massage by Cheryl Smith, LMT, who is certified in oncology massage. A survivor herself, she showed me how to loosen up scar tissue and get my lymph system flowing. She knew her stuff and showed interest in me as a whole person, not just client.

I considered it more than a treat; it was a treatment…something that will contribute to my survival. According to Cheryl’s brochure, some of the benefits of oncology massage include:

• Reduced stress
• Pain relief
• Minimized side effects of chemotherapy and radiation
• Restored energy/reduced fatigue
• Boosted immune system
• Enhanced circulation and oxygen
• Removal of toxins from body
• Feeling of peace and well-being
• Reconnection of body, mind and spirit

I am extremely grateful for Cancer Family Care for providing this service, and it wasn’t the only thing they provided for me this past weekend. My daughter attended a free, day-long camp they hold every year for cancer surivors’ children called Camp Courage. Chrissy had a wonderful time, doing nature hikes, crafts and throwing eggs against a wall to release anger. I could use that myself some days! As you can see by this photo, they even had a face painting artist on hand.

I encourage surviors and family members who lives in the Cincinnati area to take advantage of Cancer Family Care’s services. And better yet, support them with a donation. Check out their web site at www.cancerfamilycare.org.

Breast cancer vaccine: let’s get our hopes up

Breast cancer vaccine holds promise...doesn't it?

I was listening to a segment about breast cancer vaccines on NPR’s Science Friday on the way home from my massage today (ah yes, we’ll talk about that next week!)

Lead researcher, immunologist Vincent Tuohy from Cleveland Clinic, excitedly described his study, in which they injected a vaccine with the antigen alpha-lactalbumin into mice who were genetically predisposed to breast cancer. Half of the mice were injected with a placebo; the others with the real thing. The result: all of the mice with the placebo developed cancer and all of the mice with the vaccine never developed cancer. He said the vaccine could have monumental implications for preventing breast cancer and keeping existing tumors from growing. 

Then they interviewed Dr. “Muckety Muck,” an oncologist in NYC. His response was  to tell listeners not to get too excited about this. We don’t know how humans will respond; and even if it does work, it will probably take 10 years for it to make it available to us homo sapiens. Yada, yada, yada. Well, that’s interesting, because according to an article I came upon on Twitter, there is a possibility it will be tested on humans by next year!

Then he reported some of the findings from the American Association of Clinical Oncologists meeting this week  that were much more low-key. For example,  there is a treatment that would eliminate the need for a sentinel node biopsy to see if cancer is in the lymph nodes and a new chemo drug that may prolong disease-free survival. Good things, but in no way giving hope for a cure.

What is it about some doctors? They always seem to want to squash hope for people. My doctors are nothing like that, thank God. I related in a previous post how excited my oncologist was upon hearing about a vaccine for prostate cancer. And the doctor I consult with up in Indianapolis says he will be glad if his job is obsolete if it means there is a cure for cancer.

So what if this – or any other – development gets our hopes up? Would it be so bad if someone with advanced cancer happens to hang on for several more years waiting for an upcoming cure? Would it be so awful for mothers like me to have hope  their daughters might never have to experience breast cancer?

I believe strongly hope is the best medicine. That’s why I wrote From Incurable to Incredible, which shows there is hope even if a doctor tells you you’re going to die.

Speaking of the book, I learned yesterday that it is now on the press! It should be ready to purchase online in a couple of weeks. I’ve been busy compiling my mailing list for the launch. Please contact me with your email or subscribe to this site, and I’ll make sure to send you a link to purchase it as soon as it’s available.

Hope you have a great weekend!

The “what ifs”…cancer as a turning point

Questioning cancer: what if cancer is a teacher and not the enemy?

It’s common to have a case of the “what ifs” when you’ve had a cancer diagnosis, especially advanced cancer.  Like yesterday when I was pulling out a storage bin from a closet, I asked myself, “What if this pain in my side means the cancer has spread to my rib?”

It’s excruciating, and I’m not talking about the physical pain. It’s the mental torture I could put myself through if I dwell on the “what if” thought. Luckily I was able to balance it with, “What if it means you are getting old and you strained a muscle?”

But this morning I had a different kind of  “what if” experience. I was having a marvelous chat with my 11-year-old daughter as she was getting dressed and marveling how she is looking more and more grown up.

She was talking about how she would like to live until she is 101 so you can see the year 2100. Then her imagination and humor took off and she started talking about how her back-in-my-day stories would be something like this: “In my day, we didn’t have flying cars, we had to drive on the road!”

Then a thought came to my mind: What if I never had cancer? Would I be sitting here fully present with my daughter, marveling at her maturity and exuberance? Would I be grateful just to be alive and experiencing this moment?

Probably not. I would be rushing to get ready to go to work, distracted with thoughts about my day ahead, and feeling extremely stressed. Without the kick in the butt that cancer gave me, I would have never left my job. I certainly never would have considered starting a blog, much less writing a book. And you’d never find me shopping the organic and health section of the supermarket.  Right now I’d be sitting at my desk, with a can of Diet Coke and some sugary breakfast bar out of the vending machine, totally oblivious to the blessings around me.

Sometimes I’ll look at pictures of the old me BC (before cancer) and wistfully marvel at how carefree and oblivious I was to any impending health crisis. But really if I look a little closer, I’ll no longer wish those days back…because I’m a lot happier now.

I can look at this cancer as a guest that taught me a valuable lesson. OK, I think it has outstayed its welcome; but when it leaves, I can remember that it wasn’t all bad.

Finally, book winner announced.. and other hopeful news

Exciting new developments offer hope for survivors.

Sorry everyone; I know I promised I’d announce the winner of a signed copy of From Incurable to Incredible yesterday. Well, as they say, better late than never.

Just so you know, the process of drawing names is very scientific. My daughter wrote the names down, cut them out and mix them up in my handy dandy Susan G. Komen tote. I had her reach in and grab a name.

And the winner  is…Krista Torphy!

Thanks to everyone who left their comments about what brings them hope. It’s really great to hear others share from their experiences.

So what brings me hope? Lots of things actually. Yesterday for instance, I was volunteering at my 11-year-old daughter’s field day event at her school. All of a sudden, she comes up to me and gives me a big hug and kiss, right in front of all of her peers.  She actually did this several times throughout the event and invited me to hang with her friends. Will she always be this way? Who knows? But for now, I’m grateful.

Speaking of being scientific, another thing that gives me hope is how many new cancer treatments are becoming available. When I went to see my oncologist last week, he told me about a new drug called Provenge, a prostate cancer vaccine recently cleared by the FDA. He just found out about it and is using it now for his prostate patients. He seemed really optimistic about this and told me, “Who knows what will be out five years from now?”

According to an article in the latest issue of BusinessWeek magazine, pharmaceutical companies will present data on a new brain, breast, skin and kidney cancer at the June 4 American Society of Clinical Oncology conference.  How exciting is that?

Could cancer be wiped out by a vaccine? Well in my hometown, a doctor named Jonas Salk developed a vaccine for the deadly disease polio. Ever hear of anyone contracting polio recently? Possibilities my friends! Imagine the possibilities!

Spread some hope; win a book!

Hope is the best cancer treatment!

I’ve been itching to get From Incurable to Incredible to press. But every time I’d review it, it seemed I found more thing to edit.

Well, yesterday I finally approved the final proof. My goal is to have books in hand by June 12, when I’ll be speaking at the American Cancer Society Relay for Life in Mason, Ohio.

As promised, I’m giving you another chance to win a free copy. I’ll even sign it for you. Who knows, someday it might be worth something!

My book is all about hope. Everyone in the book used the power of hope to overcome supposedly insurmountable odds. So now I want to hear from you. Leave a comment about what brings you hope. It can be anything from cancer research on the horizon to the joyful laugh of your child or grandchild. Share it with us, and again I’ll put your name in a hat to win.

 I will post the winner on Friday. I hope you all enter to win!

Michelle’s story: inflammatory breast cancer

 

Michelle beat the odds of inflammatory breast cancer

I met Michelle Diekmeyer through a mutual friend and decided to have lunch last week. We had a really nice conversation and found we share much in common, in addition to the “C” word.

In 2004, Michelle noticed her breast was red and painful. She was treated with antibiotics until the pain was so bad she was on heavy painkillers. On Jan. 28, 2005, Michelle had a biopsy and was diagnosed with inflammatory breast cancer (IBC).

National Cancer Institute, IBC is a rare but very aggressive type of breast cancer in which the cancer cells block the lymph vessels in the skin of the breast. IBC, which shows up as redness, swelling and pain in the breast, accounts for 1 to 5 percent of all breast cancer cases in the United States.

Michelle didn’t have time to weigh her options after her diagnosis. They started chemotherapy the same week as the biopsy. Further tests found that levels of the the HER2/nue gene, which is associated with increased disease recurrence and worse prognosis, was off the charts.

“My treatments (with adriamycin) were pretty brutal, she said. “I was hospitalized after every treatment for severe infections, dehydration and pain. After my second mastectomy, I had a gallstone attack and had to get my gallbladder removed. I suffered lock jaw at one point. I don’t even remember parts of 2005. 

“Doctors told me I probably wouldn’t be around in a year, but the treatment worked well. In May 2006, I was told I had no evidence of disease.”

That summer, Michelle decided she was going to eat, drink and be merry. She figured she might as well enjoy life because her days were numbered. Today she has a brand new outlook:

Now I need to reverse my thinking.  I can’t abuse my body any more because it looks like I’m going to live.

You have to laugh and can’t let it overwhelm you. I went out with a group of  eight girlfriends recently and told them, “One out of eight women get breast cancer in their lifetime. You’re lucky; I took the hit for you!”

As brutal as it was, I would not change anything if I could go back in time. Having cancer has made me a better person and strengthened my relationship with God,  family and friends.

How do I purchase a book?

It's getting so close I can almost taste it!

I’ve had several people ask when and how they can purchase From Incurable to Incredible when it is released next month.

At first, it will only be available online through the Create Space and Amazon Web sites. Once the book is complete, I will include a link on this blog to the sites, so you can purchase it there. I will also make them available at speaking engagements and book signings as the opportunities arise.

I am working with bookstores, too, beginning with my hometown of Cincinnati. I will let you know where and when it will be available once that happens.

In the meantime, you can make sure you know when the book is available by either commenting on the blog or going to “Contact” and filling out the form. Indicate that you want to know when the book is released, and I’ll add you to the email list I’m compiling.

And if you can give me an idea of how many copies you want to purchase, that would be great!  Ten percent of my proceeds will go to the Lance Armstrong Foundation to help survivors and find a cure for cancer.The cost will be $18 for a 200-plus-page paperback. In addition to the 27 inspiring stories, it includes:

• Forewords by bestselling author Bernie Siegel, M.D. and Doug Ulman, president and CEO of the Lance Armstrong Foundation.
• Photos of the people in the book
• Discussion questions for support groups and book clubs
• A resource section with information on nonprofit cancer organizations 

For anyone ordering 10 or more copies, you can purchase them directly from me for $14 a piece, plus shipping costs. Just indicate that on your form and include your address. We’ll arrange for payment and delivery when the book is available.

It’s getting really close, and I’m getting stoked! It really feels like I’m delivering a baby… minus the swelling and labor pains. Looking forward to hearing from you!

Another Rx for cancer: support

Mike and I celebrate our anniversary with a dinner out with our lovely daughter (the photographer).

I feel like I haven’t posted in a while. It has been busy around here. My husband and I celebrated our 13th wedding anniversary, and my brother Doug and his band-mate came to town from California and stayed with us. It was a lot of fun, and it reminded me of the importance of having connection with family and friends.

I am blessed to have a wonderful husband who has supported and loved me for so many years. Eight out of our 13 years, he has had a wife dealing with cancer. I know several women whose husbands couldn’t handle it, and their marriages broke up. Ours has gotten stronger. I know I wouldn’t be doing so well, and probably would not have written From Incurable to Incredible,  if it weren’t for him.

All of this made me think about the role of support in cancer survivorship. It is one of the common themes I found when interviewing the survivors featured in my book.  Steve Scott, a stage IV colon cancer survivor credited his marriage for wanting to carry on and was helped tremendously by attending the Wellness Community.  Susan Farmer, a stage IV breast cancer survivor, credits her husband, friends and an organization called Hope in Bloom. Christine Dittmann, a stage IV ovarian cancer survivor, had a whole town supporting her when she was diagnosed right before Hurricane Katrina demolished her home and uprooted her life.

A 2006 study in the Journal of Clinical Oncology found that isolated women had an elevated risk of mortality after a diagnosis of breast cancer. They say it’s likely because of a lack of access to care, but I think there’s more to it than that. The ones who fared best had relatives, close friends, adult children or a formal support group that helped them in many ways.

I’ve mentioned that I am now a board member of Pink Ribbon Girls, a support group for young breast cancer survivors. Every Mother’s Day, Pink Ribbon Girls sends flowers to the mothers of members who have passed away. Today, we received a thank-you from the mother of Jennifer O’Neil, a member who died around the time I was first diagnosed.

Jennifer was there for me when as I lay in a hospital bed, so sick that I was thinking of not continuing chemo. She called me and encouraged me to keep going. As a board member, she was there for me and so many others. I want to continue this tradition by serving on the board and writing my book and blog.  We all need to have someone who can say, “Stick with it; you can do it!” And I find that by being that person, I’m helping myself, too.

I often say that the people in my book are like an extended support group for me. And I’m hoping that other people will feel that way, too.  It won’t be long! I just completed reviewing the final proof, so it should be ready to roll in a few weeks.  Thanks for your support!

Living with cancer

Warning: waiting for scan results can cause extreme anxiety, depression and fatigue. Please consult your doctor if you experience any of these symptoms.

I spent a good part of yesterday in hell. It was my choosing. On Monday, I had my PET scan redone because last month it showed a slight progression. It was so small, they thought it could have been a variance in the way it was read.

It only takes a day to get results back, but I waited all day Tuesday and all day yesterday. No call. I tried to distract myself with proofing the final layout of my book. But my mind went to the worst possible scenario: “It’s so bad, he doesn’t want to call me.  It’s all over my body … ” You get the point. By the end of the day, I just got mad. Do these doctors realize how painful it is to wait?

Finally, I received the call this morning. It wasn’t great, but it wasn’t the awful news I anticipated. My scan showed a very slight progression in cancer activity. The size of the spots remained the same. So I’m going to switch from one hormonal therapy, Arimidex, to Aromasin. I am grateful that I have a less invasive option open to me than chemo and am looking forward to my busy, fun summer.

Part of my fear stemmed from the fact that a dear friend of mine, who was in remission and doing so well, just found out her cancer is back with a vengance. She was in so much pain, they put her on Vicodin. It really pulled the rug out from under me. I’ve been crying for her; scared for myself.

We have so much in common that I automatically thought my situation is or would soon be like hers. But then I was reminded that everyone’s body and situation is different. It doesn’t erase the pain I feel for her, but it helped my fear. Plus I have an inner knowing that my friend’s spirit is strong, and she is going to get through this.

As I was once again reviewing From Incurable to Incredible, I was struck by something Ann Fonfa, founder of the Annie Appleseed Project, related about how people would call her and say, “I’m dying of cancer.” Her response: “Wait, let’s have an attitude adjustment. You’re living with cancer. Get that dying stuff out of your mind.”

I think that’s a good way to look at things, and a way to cope when scans and changes in treatment arise. Would I rather not be living with cancer? You bet! I truly believe someday I will live without cancer. But in the meantime, if I just look at it as something I’m dealing with like diabetes, it helps take away the fear. After all, I would rather be focused on the joy of living–and I have plenty of that.

Technical Difficulties, book news and other observations

Oy vey! Where did my list go?

Hope you all had a great Mother’s Day. I had a wonderful time visiting with my in-laws and getting big, warm hugs from my 11-year-old daughter Chrissy.

As I write, the final (hopefully) proof of From Incurable to Incredible is cranking out from my printer. We’re going to make sure they made all of our changes and then, if all is well, we will go into the production process. As it looks now, it should be available by early or mid June.

For the past year, I have been keeping an email list of those of you who have said you were interested in learning when the book is available for sale. The list, unfortunately, has somehow disappeared from my computer. I am going to see if there is any way to relinquish it. But, just to be safe, if you would like to be informed when the book is out, I’d suggest one of two things:

1. Go to the contact page and say you want to receive an email list. You’ll be asked for your email address, which will be shared with no one but me.
2. Sign up for an email subscription to this blog, so you won’t miss the big announcement. Just enter your email address under the Subscribe button. Again, I promise, your email is safe with me.

I am already receiving signs that this book is really needed. Another person with stage IV cancer came up to me the other day and said she cannot wait until the book comes out. Her doctors have told her there is nothing more they can do. She asked what I’ve learned from interviewing all the survivors for my book. I was able to send her the chapter about a survivor with a similar rare cancer. I hope it was able to provide hope and valuable information to her.

As for me, I had the follow-up scan to see if the cancer is progressing on the treatment I’m on. I’ll learn tomorrow, and if it has, we’ll switch to another hormone treatment. For some reason, I’m not anxious like I was last time. I know that anxiety does me no good, and I trust that God has my back. I’ve done my part; I can leave the outcome up to a power greater than myself.

I guess that goes for my lost email list, too. Although a call to Microsoft is in my future.

Chemicals and cancer: government finally gets it!

Protect yourself!

It seems like the more I do this blog,  the more serendipity in subject matter arises. Monday, I posted about environmental toxins in relation to cancer. Last night, my family was watching CNN, and I learned about the expert panel who is advising Obama about chemicals in the environment.

I mentioned in Monday’s post how I don’t trust the FDA to regulate. Well, according to the panel’s findings, there are 8o,000 chemicals  in commercial use, but federal regulators have assessed only about 200 for safety. Aha! I’m not just being cynical!

In a report released on Thursday, the panel wrote, “With the growing body of evidence linking environmental exposures to cancer, the public is becoming increasingly aware of the unacceptable burden of cancer resulting from environmental and occupational exposures that could have been prevented through appropriate national action.”

Another shocking thing mentioned in the CNN report: they found industrial chemicals in umbilical cord blood. So children, our most vulnerable, are being affected even before they’re born! The panel said that health officials lack critical knowledge on the impact of chemicals on children and fetuses.

The way it is now, the government has to prove a chemical harmful before it can removed from market. It seems virtually nothing is done before they are released to market. The panel is recommending a complete change in the nation’s laws related to chemicals.

Finally, the government is waking up to this atrocity! It’s no coincidence that cancer rates are rising, especially in children and young women (breast cancer).

So what can you do to decrease your exposure to harmful chemicals? CNN offers some tips. The only thing I don’t do is taking off our shoes. There are going to be some new rules in our house. They also recommend BPA-free water bottles (take that, cancer organization that posted it was safe!) Another recommendations was filtering water: I’d recommend getting a reverse osmosis filtration system for your water; it gets rid of everything. Check out CNN’s tips here: http://www.cnn.com/video/#/video/health/2010/05/06/hm.environmental.cancer.risks.cnn

Encounter with an angel? You decide.

Angels can come in all kinds of disguises.

My friend Nevine, a fellow breast cancer survivor with whom I share a special affinity for all things spiritual, shared this lovely story on her blog a while back. I have finally gotten around to sharing it with all of you. Enjoy!

My patience was again tested that afternoon as I took my house remodeling plans downtown to the building department. I had enough change to feed the meter for 20 minutes, just enough time to run up and get back.

I was about to cross the street when a man approached me. My kids will recognize this scene because for some reason, all the homeless people, whether they are genuine or not, always pick me. It doesn’t matter how many times it happens, I always stop, listen and give. 

This man, African American middle-aged and missing all his front teeth, stopped me and asked if he could ask me a question. I was expecting the usual “can you spare a dollar or I need a bus ticket to go home … etc.” But instead he begins with, “I see you have plans in your hand, are you a courier for the architect or engineer?

He spoke with a stutter and his head bobbed from right to left, which would make one think that he is not all together there. “No. I replied; I am the architect. His eyes widened with surprise and a wider smile: “Oh, you’re an architect of a different color… you’re a woman!” He was laughing as if he stumbled onto the Loch Ness monster that no one believes exists. I had not thought of myself as a woman architect in a very long time.

“Do you mind if I ask where you are from?” he said detecting my accent. I answered I was from Egypt. ‘”How long have you been here?” he continued. Answer: 30 years. Question: Cairo?… Born and raised? He knew the capital. Yes, I answered, feeling the time ticking. But he kept going on.

“There are Egyptian Jews you know, ” he said. “Yes.” I said ,”And there are Christians and Muslims too…and maybe even a couple of Buddhists, ” feeling the pressure to move on. He continued telling me the story of the Jews crossing the Red Sea, which he says is actually the Sea of Reeds, where they found chariots’ wheels. He had seen it on National Geographic TV. He kept on with the story and at that point, I felt, mainly puzzled and a little bit impatient. I finally told him I had to go. Not so easy.

“One more second,” he says, “Are you Christian?” I replied yes. “What is your favorite song about Jesus?” he asked.  ”Amazing Grace” was all that came to mind. So he went on telling me everything he knew about the song, who wrote it, who sang it, what year…

“I really have to go,” I told him. Finally he told me about this sandwich place at the corner of the street that sells one-foot subs for $5.  “Aha! Five dollars will buy me a ticket out of this!” I thought. But he insisted that he had to give me something in return.

While I was reaching for my wallet, he stood straight and began singing of the top of his lungs “Amazing Grace, how sweet the sound,” serenading me and the entire street. How could I not be touched? I thanked him,  gave him the money, and ran into the building with his voice lingering behind me.

That short encounter reminded me that things aren’t always what they seem. I didn’t look like an architect to him, and he didn’t look like an educated man to me. In my impatience, I forgot to ask him his name, but then I thought that he could just as well have been an angel in disguise singing God’s praises and reminding me of my blessings. For five bucks, what a bargain.