Monday, October 15, 2012

Defiant, hopeful or just plain crazy...

I would be lying if I said I had not asked myself, "What if it comes back and you've spent so much time, energy and money, all for naught?"  Questions like that come up when it has been explained to you that you can never truly be "cancer-free."  Aside from the general desire/plan to live as long as possible to hang with my people, this marks the first occasion I have made a long term commitment as a breast cancer survivor. 

I am 52 years old, a critical care nurse of nearly 30 years who wants to go to graduate school to earn an MSN Nurse Educator degree.  I have milked my associate degree in nursing and my BS in biblical education as far as I can.  I want a booster shot of current nursing theory and the credentials to help advance the profession I love.  That's all well and good, but what if the cancer comes back $20,000 into the journey?  Will I regret that I spent every moment of free time studying instead of hanging with my son and husband?  Will I feel like I have wasted critical family resources?

If I dare breathe these questions out loud, the listener rushes to reassure so quickly that I sense the topic too unhappy for a "real" discussion.  But if you live with the very real threat of cancer, you cannot help but ask the obvious, even if it is uncomfortable.  Yeah, yeah, yeah, I know that even without cancer, I could sign up for grad school and still be newly diagnosed at any point along the way or I could step off the proverbial curb and get hit by a bus.  It just feels like my risk is double that of the undiagnosed, sweetly ignorant, cancer-free student.

So, what does one do?  Well, I have decided to move forward, prayerfully and with confidence that my Heavenly Father will make it clear to me whether I should pursue this or not.  I figure there are many places in the application process that could be used as "STOP" signs.  After all, my credits are rather dusty and I was not a straight A student back in the early 1980's.  Not "getting in" could be a huge red flag to the undertaking.  Applying to grad school requires a written statement of professional goals.  This would be another opportunity for a red flag to drop if my writing sample was not up to snuff.

As of today, no red flags have dropped.  I have been accepted to Sacred Heart University in Fairfield, Connecticut and begin class on October 22nd.  I am giddy with excitement and so happy to start the process.  I will move forward with confidence that God is in control of my life.  The Bible states that He knew the number of days I would live before I was born.  He knows the exact number of hairs on my graying head.  He loves me.  I have seen Him work in my life and trust that whatever is in store, there is a purpose in it to improve me, glorify Him and help some one else.  I have peace about being in His hands.  I wish the same peace for all of you.  Go in peace, serve the Lord.  Live boldly and be a blessing to people around you.
Jen

Thursday, September 6, 2012

    This was written by Devon Noelle DowneySmith,
    Marketing & Communications Manager
    Komen Oregon and SW Washington

In my five years at Komen I’ve seen some of our most passionate supporters pass away, and have attended their memorial services – two in the last year alone. I have witnessed women in Multnomah County who, without insurance or support, shed tears of gratitude as we explained how we can help them pay their light bill so they don’t have to choose between life’s basic needs and their breast cancer treatment. These moments take me out of my work being merely a job, and remind me of the importance of what we’re doing.

 
Earlier this summer, I received an e-mail from a woman named Michelle, thanking us for all we had done to help her sister, Sheila, throughout her battle with breast cancer. Sheila was originally diagnosed in April 2003 on the same day she gave birth to her youngest daughter. She fought the disease for eight and a half years before finally passing late last year. Michelle attached a photo to her e-mail of her sister with her daughters and nieces at the Race for the Cure. I suddenly realized the woman in this picture was the mother and aunt of the little girls whose photo was from the 2010 Race for the Cure. This simple realization put into clear focus why the work we do is so important.
 
Now, instead of simply seeing a great event photo, I suddenly see little girls who no longer have their mother or aunt. It was a sobering reminder of the urgency of our mission and the importance of having Komen resources available in Oregon and SW Washington. Too many of us have lost our mothers, aunts, sisters, grandmothers and friends. Too many of us have lost someone we love to this disease – someone who made our world brilliant and meaningful, someone whose absence is a heartbreak that will never fully heal, a void that will never be filled. 
 
 
 Here at Komen Oregon/SW Washington we’re removing barriers, providing resources, investing in cutting-edge research to find cures, and providing screening for low-income women. We are the largest provider of these services in Oregon and SW Washington.

Race for the Cure revenue is what fuels our mission. Your participation is essential. I hope you will join us at the 2012 Race for the Cure. Register or make a donation today. Do it for Sheila, do it for her sister, and do it for her daughters who will be walking this year in memory of their mom. Do it for love. Do it for the cure. 

With gratitude,















 
 
 
 

Hello Friends! This year I am "racing" for my friend Tiffany whom many of you have prayed for. She is doing beaurtifully! Support the cure if you can. You can even support us if you sleep in on the day. Love you all and thank you for your support of me in 2009-2010 and now for my friend Tiffany and Louise!
I have raised $0 for Komen Oregon Race for the Cure® toward the goal of $100.
Support me with a donation

Friday, July 13, 2012

Breast-Conserving Surgery & Recurrance

"One in five British women who have breast-conserving surgery require a reoperation."
www.latimes.com
I had an inner red flag go up when I was offered lumpectomy vs. mastectomy. The stats say longevity is the same, but there is a slight risk of recurrance with breast-conserving surgery. After two lumpectomies, it was discoverd that I had a second form of breast cancer that was "wide spread" in the same breast with the invasive tumor.  Once I had the bilateral mastectomies, the pathology showed atypical cell changes in the non-cancerous breast.  It looks like I surely would have been one of the recurrance statistics and it might not have been that long before recurrance would have reared its ugly head.  The MRI was not helpful in detecting the wide-spread ductal in situ cancer during my decision process for lumpectomy vs. mastectomy. Am I just an odd duck (don't answer that) or should we be trying to find a way to identify the cancers like mine that are lurking in the shadows, likely to recur, so those women can go straight to mastectomy? I am thoroughly content and even grateful that I decided to hack off  both the offending parties that were gearing up to have a cancer fiesta and kill me!  It would not have been worth it to me to have my breasts an extra six months or a year and half before facing another biopsy or more surgery.  It would have been an unnecessary burden to live with the thought that more cancer could be growing and spreading to my lymph nodes or anywhere else for that matter.  Doctors cannot guarantee that recurrance will be caught before metastasis happens.  I know that my mind is more at ease with my decision, despite having to live with the consequences of losing my breasts.  I still stand by my blog post, "The Tenth Circle of Hell," which identifies the choices and decisions faced by a newly diagnosed woman with breast cancer as those among the most gruelling mental tests in life.  My heart goes out to all who have to wear those shoes.  We need to come together to create a user-friendly, critcal-thinking algorithm to assist our breast cancer sisters in discerning what path to take for their unique situation.

Tuesday, July 3, 2012

HURRAY for the AMA!

In 2009, the US Preventative Services Task Force recommended that routine mammograms start at age 50 instead of age 40.  It is easy for me to remember how livid I was when I heard this because I still feel the same way.  If I had waited until I was fifty to get a mammogram, my two kinds of breast cancer would have surely metastasized before being discovered.  Thinking about that makes me feel expendable in the eyes of the federal government.  Subjectively, I seem to know of a lot of women under the age of 50 with breast cancer.  I have to ask, "Why don't our lives count?"

My family history is not considered "high risk," which would trigger earlier screening.  I would have never found the invasive tumor tucked up by my chest wall, nor the widespread ductal insitu on self-exam. In fact, after the tumor was identified, chipped and "wired" for sentinel node testing pre-op, a second mammographer took three tries to locate the tumor to verify wire placement.  Scary, I know, but that is why I credit my mammographer, Lori, at Legacy Meridian Park Breast Health Center with saving my life.  Her expert gathering, tugging and stretching revealed the little bastard when others might have easily missed it.  Because of Lori's commitment to excellence, I sit here today, writing to advocate that others be given the same chance for early detection as I was given.  

The good news is that the recommendations triggered a firestorm of disagreement, with the American Cancer Society and other physician associations voicing support for mammograms for women under the age of 50.  Now the American Medical Association has taken a strong stand regarding USPSTF recommendations which also include prostate screening for men.  I am most grateful to the AMA for their involvement.  With their clout, combined with the strong voices of other clinicians, American men and women will not be restricted to USPSTF guidelines which could limit access to screening and ultimately save lives.

As a side note, last year while watching the evening news, I happened to see Providence and Legacy cancer services television advertisements back-to-back.  The Providence Cancer Institute ad was first and a physician spoke about cancer care and screening and stated that they recommend mammograms starting at age 50.  Just as my blood began to boil, the Legacy Health ad started with our spokesperson recommending mammograms at age 40.  My boiling blood dropped to lukewarm and I was pleased and proud to know that I had chosen the right team!




Medpage Today
Putting Breaking Medical News Into Practice

AMA Bucks USPSTF on Mammography


CHICAGO -- The American Medical Association's House of Delegates has come out in support of screening mammography for women starting at age 40.
The new policy is in conflict with the controversial 2009 recommendation of the United States Preventive Services Task Force (USPSTF) that routine screening mammography for breast cancer was unnecessary in women younger than 50.
The House of Delegates stopped short of recommending that "every woman should get routine screening mammograms every year starting at age 40." Strongly debated in Tuesday morning's session, that language was rejected by the delegates in favor of a lighter "should be eligible" phrasing.
In a further slap at the federal task force, the House of Delegates voted to adopt a resolution stating that the AMA "expresses concern regarding recent recommendations by the USPSTF on screening mammography and prostate specific antigen (PSA) screening and the effects these recommendations have on limiting access to preventive care for Americans."
The firestorm that followed the USPSTF recommendations attracted congressional attention from legislators, and HHS Secretary Kathleen Sebelius eventually issued a statement emphasizing that the USPSTF does not set health policy.
A number of medical groups, including the American Cancer Society, the American College of Radiology , and the American Congress of Obstetricians and Gynecologists disagreed with the USPSTF recommendations and said women younger than 50 benefit from having routine mammograms.
The USPSTF again set off a controversy in 2011 when it said that healthy men do not need prostate cancer screening with prostate specific antigen (PSA) because the test does not save lives and often leads to unnecessary testing, interventions, and treatment. The conclusion came after the USPSTF reviewed data from five large randomized clinical trials of PSA testing, which all found found no mortality benefit among men who underwent screening PSA testing and were followed for 10 years.
The PSA recommendation has been controversial in the medical community, especially after a major European trial showed routine testing in healthy men resulted in about a 21% reduction in the rate of prostate cancer deaths after 11 years of follow-up.
In both instances, speciality medical societies were not happy that they weren't involved in drafting the cancer screening guidelines, and on Tuesday, the AMA adopted another policy encouraging the USPSTF to implement procedures that "allow for meaningful input" from specialists.
The USPSTF is an independent panel 16 volunteer members, most of whom are clinicians in primary care or preventive medicine.
Emily Walker
Washington Correspondant
Emily P. Walker, MedPage Today Washington Correspondent, covers Congress, FDA, other health agencies in Washington. She also covers an array of healthcare events in the nation’s capital, focusing on intersection of policy and medicine. After earning a BA in journalism and political science at Western Michigan University, she worked at the Kalamazoo Gazette, Congressional Quartely, and wrote for several medical newsletters.

Sunday, July 1, 2012

The Chemo Fairy

The Chemo Fairy made her debut in spring 2011, when my friend Diane, yet another breast cancer"victim,"  was nearing the end of her chemo treatments.   I wanted to celebrate her last chemo appointment by arriving in a goofy pink outfit with giant boob cakes to share.  To make use of my recent "rack vacancies," I stuffed the bra with pink ribbon mints and breast cancer bracelets to hand out to everyone.  We had so much fun, I knew the Chemo Fairy would certainly make future appearances.  That is when the outfit began to evolve.

Dr. Olson joined the fun.  He is an awesome oncologist, wonderful human being and an all around good guy!  It says a lot when nurses choose him if they get cancer.

Anybody want a mint or a pink bracelet?

 Diane, an endoscopy nurse, has an equally warped sense of humor.  A month later, "What goes around, comes around," proved true when she showed up to my first colonoscopy dressed as the "Colon Fairy!"  Yes, she had goofy glasses, rubber gloves and came bearing a "colon cake" complete with anatomical details, including a polyp!  What a nut!  Because I was polyp-free, she presented me with a blue "clean colon" ribbon that hangs in my bathroom to this day!
Tiffany is surprised by the Chemo Fairy at her last Chemo in June.  She is a true Chemo Warrior and did better than I did during Chemo.  Part of it is that she is younger, cuter and thinner than I am, but I don't hold that against her!  I had orderd new fairy costume components for Tiffany's day, but alas they did not arrive in time.  I substitued a short tutu with my new "liquid metal" hot pink leggings which kept sliding off my backside whenever I bent over.  Unplanned comedy...anything to cheer up the chemo lounge!  After I was done yucking it up with all the patients and "blessing" them with my wand and handing out boobie cakes, I flitted out the door in a less than graceful fashion, tugging at the back of my hot pink leggings to keep my underwear covered.  Apparently, after I left, a patient asked, "Does the Chemo Fairy come every week?" 

By the time Louise's Cancer Birthday Bash came around a week ago, all the pieces were here and so, this is as good as it gets!    Loise used her party to raise cancer awareness, promote local bands, collect food for our food banks and auctioned off donated items to raise money.  The entire event was terrific, just like the lady who planned it! 

The Chemo Fairy doesn't want to keep all this fun to herself and would like others to join the Chemo Fairy Club and share photos of your exploits and outfits. 

A great and inexpensive place to buy pink ribbon mints that are individually wrapped, pink silicone bracelets, ribbon lapel pins and rolls of pink ribbon stickers is at orientaltradingcompany.com. 

I got my wig and hot pink eyelashes at candyapplecostumes.com, very affordable and great service. 

My tutu was custom made by "lil tutu princess" on Amazon.com.  She added a row pink ribbons with rhinestones all around the waist! 

The leggings came from onlyleggings.com.  They were the only ones I found to have sizes in the hot metallic pink leggings up to 3XXL.  I suggest you order larger than you are to avoid my "mooning" problem.

I got my pink hightops from Zappos.com...love them. They do run big so don't buy over your usual size.

I picked up my wings at a dance store (for ballet and square dancing) as well as the first short tutu. 

I have made pink cupcakes using a stawberry cake mix, frosted them with cream cheese frosting, then topped them with a watermelon candy ring stuffed with either a cherry sour ball or a raspberry gumdrop.  Everyone loved the Boobie Cakes!  I have also purchased a ribbon cake pan and a ribbon cookie cutter. 

Those are my ideas and I would love to hear yours!


Monday, January 16, 2012

I had a dream...

January is the second year anniversary of my bilateral mastectomy surgery.  I chose not to have immediate reconstruction because of the two lumpectomies preceding the mastectomies and I was looking down the barrel of eight chemo treatments.  Reconstruction is not a "slam dunk."  It requires that spacer bags be placed behind the pectoral muscles and be injected with fluid at intervals to stretch the tissues to create a space for the implant.  The process is very uncomfortable and my oncologist mentioned one day that a chemo patient called in "sick" for a treatment because her injections the day before hurt so badly.  Also, I was not convinced that reconstructed breasts were all they were cracked-up to be.  More surgery would be required down the road to replace the spacers with the silicone implants.  Many women also develop scar tissue that can encapsulate the implants or have leaks that require surgery.  I have hugged a friend with implants that felt like I was being pressed up against two grapefruits.  Another friends is going to physical therapy and has to deal with massaging the implants back under the pectoral muscle.  A breast cancer survivor and single mastectomy coworker told me she has had eight surgeries to deal with her one reconstructed breast and that she is "DONE!"  I have heard women complain about one breast implant sagging out of alignment with its mate.  I have heard how implants feel like a constant 10 lbs of pressure on your chest. I have seen salvaged nipples that looked beautiful and some that looked ghostly anemic. 

If I could know with some certainty that the reconstructed product would actually be "sexy" to my husband, it would have been a "no-brainer."  Looking at photos of reconstructed breasts at the consultation with my plastic surgeon gave me reason for pause.  Of course I queried my husband about his opinion.  I asked him straight out whether he felt he needed breasts at all for future sexual pleasure.  I begged him to honestly tell me if he thought reconstructed breasts could be attractive to him.  You can guess his reply.  I know he was as honest as he could have been at the time.  I have compassion for him and the muddled place he was in.  How could he really answer these questions?  I was putting him in a worse place than between a rock and a hard spot.  If I had believed that reconstruction would truly have met his needs, I would have reconstructed right away, even if I had not necessarily thought I needed it.

Whether I needed to have breasts was something I did not know yet.  To be sure, I felt a lot of pressure to reconstruct.   It seemed that anyone who knew what I was going through, assumed I would be reconstructing.  People were really surprised that I did not automatically sign up for that.  I found it was often difficult to articulate why I was not going to reconstruct at the time of mastectomy.  Culturally, it seems like an expectation that mastectomy patients will automatically reconstruct in the size of their choosing and get on with life.  After all, "everyone" is getting implants, even if they don't have cancer.  What's the big deal?  It's no different than getting a new set of really good all weather tires, right?  I could not put my finger on it exactly, but I did not want to make the wrong decision for the wrong reasons.  I wanted to explore what life would be like without breasts first to determine if I REALLY wanted to commit to the reconstruction process.

So, now I have been exploring life without breasts for two years.  It has not been a stagnate process.  I have seen progressive changes in my conscious thoughts and in my dreams.  Last night I had a dream.  It was extremely petty compared to the dream of Rev. Martin Luther King, who happens to be celebrated on this date.  My dream life has always been a pretty classic potluck casserole of my current issues in life.  Some times my dreams are fast-paced action adventures, sometimes strange and goofy combinations of people and events that are laughable and fortunately, sometimes romantic and erotic.  The fact that I can rely upon my dreams to reflect my present status and state of mind actually gives me a peek into my authentic self....I think, I am, after all, no psychiatrist.  The dream I awoke from this morning involved a very large family and friends gathering at a home.  It was very crowded and buzzing with conversation and happiness.  I can relate this part of the dream to the fact that I was writing thank you cards and sending out little photo books of our family Christmas party last night.  Then, I dreamt that my nephew, Tim, came to the party about halfway through.  This was a wonderful thing because in real life, he has not socialized with the family in a decade and it has been a source of sadness and concern for me.  He is often on my heart and I try to pray for him every day.  This eeked into my dream because as I was addressing those thank you cards, I had to call his sister, my niece, to get her address.  I asked her if she also had an address for her sister whom we also don't get to see much, but for other reasons.  She mentioned that she could find it for me, but that she, herself, had not had the opportunity to talk to her sister over the holidays.  Without warning, I found myself overwhelmed with emotion thinking about the prodigal niece and nephew.  My voice quavered as I confessed that I was suddenly emotional, that it was just because I love these kids so much and want them to know they are loved, missed and cared for.  I would give anything to communicate that the family arms are always open, accepting, understanding, forgiving...always...just give us the chance.  Please give us the chance to show that we have grown and changed too.  Across the board, I can say we have grown and changed into better versions of what you remember.  Anyway, that is why Tim wandered into my dream, spot on.  Then my dream shifted to the intimate company of one person at the party.  As physical closeness and snuggling increased, I put my hand on my chest and heard myself admit before being discovered, "I don't have any.  I, uhhh, have a pink ribbon."  Then, I woke up.  Damn.

What is interesting to me is that early on, after the mastectomies, I would have dreams of still having breasts.  I would look down toward my chest in my dreams and I could see them or at least see cleavage.  Then I began having dreams that dealt with the missing breasts.  Now, it seems that my subconscious has linked the fact that they are not simply gone, but gone due to cancer.  What I like best about all of these dreams is that I still have naughty dreams even when my subconscious knows I don't have boobs anymore, which frankly, were a big part of the naughty dreams before cancer.  I don't think it is a coincidence that my dream life is reflecting my own little epiphany about being boobless.  In the last month or two, I have realized that I have arrived some where important.  It seems clear to me that I have arrived at a destination I would be sorry I missed if I had rushed into reconstruction.  It is like I have been slogging up a mountain trail in dense fog.  I have been on the unfamiliar, shrouded trail so long that I wasn't expecting any view points.  All of a sudden, the sun burns through the fog and I realize I am up about five thousand feet, overlooking the western Columbia River Gorge.  A broad smile covers my face and I drink in the view.    I believe that my "ah ha" moment is all about stripping away the superficial and finding the core of my sexuality.    I have realized that I still look at my husband with the same loving and lusty desires.  The internal drives and feelings have not changed.  In fact, because of who he is to me and how he has treated me through this cancer journey, my loving and lusty feelings for him have intensified.  I have found myself feeling very aroused and ready to get after it without having any insecurity about not bringing boobs to the table...or bed, especially if there is red wine involved.  What an amazing place to be.  What a paradox that my sex life could be richer after mastectomies than before. 

I remember a particularly intense conversation with Roger a few days before my mastectomies.  I was actively grieving the impending losses as Rog and I were lying in bed talking. It was dark and I was expressing my fears about being less attractive to him sexually and wondering if I was making the right decision not to reconstruct.  He said something that night that I will never forget.  It was so profound and so reassuring that I leaped out of bed and ran to the kitchen to write it down.  I have said it to myself many times since.  If there were ever a book about our marriage, his comment would be the title.  As I was wading around  my pool of doubt and insecurity, he declared, "Don't worry, Babe, we will still be us."  That was it.  That is what it has been since.  That is what it is now and that is what it will be.  What comfort.  What confidence.  What an expression of real love in it's true form.  What a relief.  What a great focal point.  What a gift.  Thank you Rog, for teaching me to be confident in the fact, that no matter what comes our way, "We will still be us."