Redemptive Suffering, Breast Cancer, and TEEN Magazine

Anyone remember TEEN Magazine from the 1970s and 1980s?  In it, they had a section for Pen Pals. Even at age 16, I had an interest in writing to people from all over the world, so I asked for a Pen Pal from Australia.  At the same time, a 16 year old girl from Australia wanted a Pen Pal from the USA.  And thus my almost lifetime friendship with Helen began.

Helen and I wrote countless times through our teenage years exchanging stories about our countries, our families and our lives.  Whenever Helen’s letters arrived, I immediately ran to open them and see what new adventures she could teach me as Helen grew up in the middle of the Australian Outback!

When I was in my early 20s, Helen wrote and said she was going to visit the USA, could she come to visit me?  We were both thrilled that we would finally meet.  It was so much fun meeting this friend as it felt like we had known each other forever.  After her visit drew to a close, Helen shared the bombshell with me that she was discerning a call to be a nun – and not just any nun!  A contemplative nun in a cloistered monastery where prayer is their main ministry.  I was shocked!!  Even though I was a practicing Roman Catholic, I found it hard to believe that this young woman that often talked with me about normal teen and young woman stuff – LIKE BOYS – was going to be a cloistered nun!  Helen did discern that she had a calling.  We wrote through her transition from Postulant to Nun, and so my Pen Pal exchange has continued with now Sr. Helen for all these decades.

Sr. Helen is in a lovely monastery in Australia.  Although I’ve never been there, from her vivid descriptions and pictures she has sent, I feel I have.  The nuns in her community prayed for me all the time I was going through breast cancer treatment.  And ironically, one of their Sisters was going through Breast Cancer and chemo almost simultaneously with me.  Literally, I felt their prayers.  One of their sisters uses email and  the internet on behalf of their community, so I was able to keep them posted with my progress.

The Sisters prayed for my mom and her breast cancer diagnosis.  And then when Diann, my sister, was recently diagnosed with Stage 3 breast cancer, one of my first emails was to Sr. Helen’s community to ask them to pray for Diann.  I knew without a doubt that my old friend, Sr. Helen, would make sure that happened and would pray faithfully for Diann and all her family!

Yet another day arrived I had been dreading for Diann:  Her post-surgery consult with her breast surgeon and first meeting with her Oncologists to discuss pathology, her chemo schedule and treatment plan.   Standing in the driveway, getting into my car, the postal truck pulled up and my familiar and friendly carrier handed me my mail.  Immediately, I spotted a letter from Sr. Helen.  Sr. Helen’s Aerogramme’s with a beautiful Australian stamp have looked much the same for these 40 years!  Eagerly, I stuck it in my purse to read LATER as I got in my car to pick up Diann for the all too familiar 120 mile round trip trek to Ann Arbor, Michigan.

LATER came while I was waiting for Diann while she was in a medical test.  My compassion for Diann, what she was going through, and my fear of the appointments that lie ahead were overwhelming.  Sitting at the Cancer Center at University of Michigan, where I have spent more time than many of its employees,  the weight of Diann’s diagnosis, my mom’s, my own, and my father’s death from pancreatic cancer seemed absolutely unbearable to me.  My heart was filled with tremendous grief, and I felt overcome with emotion and fear for Diann.  My suffering seemed more than I could bear.   In an attempt to distract myself from my emotions, I reached for the 6-month old Christmas Good Housekeeping magazine lying on the waiting room table while making a mental note to  donate current magaines on my next trip.  Then, thankfully, I remembered Sr. Helen’s letter.

Opening the letter, Sr. Helen’s words were balm for my breaking heart, and I knew God was speaking them directly to me.   I believe you will find great meaning in Sr. Helen’s words no matter what your religious beliefs:

My dear friend Denise,

…When Sister brought your email to me while I was cutting the altar bread sheets (into round hosts), I knew it held bad news with such a delivery.  While I wait for the sheets to dampen down in a large humidifier, I do my spiritual reading.  The book I was reading on that particular day was Austen Ivereigh’s book, “The Great Reformer – Francis and the Making of a Radical Pope.”  Just before your email arrived, I had read about Pope Francis’ suffering when he was 21 and had part of his lung removed.  His mother and others were telling him to displace his thoughts, it will soon pass, etc., which was NO HELP AT ALL.  It was only when his old high school teacher, Sr. Dolores told him that “with your pain you are imitating Christ” was he able to find peace.  What had been pointless, was now redemptive.  The pain was no less, but bearing it became possible.  Later in the book, Pope Francis is quoted as saying, “Christ’s suffering on the cross was intensely lonely.  In any deep suffering, physical or spiritual, what a person needs is people who love them, who respect their silence, and who pray that God may enter into that space which is pure solitude.”   Ivan Ivereigh also quotes Victor Frankl (Holocaust Survivor) “…the secret to enduring great suffering is not to try to imagine its end, but to find meaning in the present.”

Denise, I KNOW you can resonate with this.  I cry with you concerning the breast cancer diagnosis of Diann.  And Diann’s anxiety must be great as she knows what you went through.  We are praying that her ordeal will be kinder.”   My love and prayers, Sr. Helen

I marveled at God’s timing, because as I read Sr. Helen’s letter, my fears literally vanished. Pondering what all it took to get to that precise moment – my email magically going across the globe to a nun’s computer at a cloistered monastery, arriving on a different date than when it was sent although only seconds apart, the perfect timing of the hand delivery of that email to Sr. Helen, Sr. Helen reading a beautiful book with just the right words to write to me with her great spiritual wisdom, and her letter arriving via snail mail at precisely the time I needed it.

And so TEEN Magazine circa 1972, thank you for matching me with my Pen Pal, Helen, from Australia.  God does indeed work in mysterious ways.

Traveling Ahead of My Sister and Her Breast Cancer Diagnosis

Many of you are writing asking updates about my sister, Diann, who was recently diagnosed with Stage 3 Breast Cancer – ER+ PR+ Her2Neg.  Diann just had a Lumpectomy with Lymph Node Dissection – margins cleared, awaiting final pathology report about how many positive nodes.  Diann will begin chemotherapy the first week of June.  It has been a rough month for Diann and those of us who love her.  She was scanned, scanned and scanned again.  Because of scans, she had to go to a kidney specialist in between all the breast stuff.  But fortunately that was “watch and wait.”

Observing someone you love cope with cancer, makes you realize what they are made of and how they handle extremely stressful situations.  Diann has amazed me with her fortitude, courage, and hope.  Raising three kids as a divorced mom, she has reservoirs of strength that amaze me.

Many women absolutely hate the word “journey” related to a breast cancer diagnosis as often they would like to save that word for more pleasant times, like a vacation.  I’m one that happens to think the word “journey” is very appropriate. Breast Cancer takes you places you never thought you would be, there are many valleys and some mountaintops, and the road is very, very long.  Sometimes it is a straight road, but other times it is winding and you cannot see around the next corner.

So in pondering “journey”, this same imagery keeps going through my head.  I feel like this is a modern-day version of two sisters going west in a Conestoga Wagon at different times and in between our mother made the trip, too.  Necessity forced me to blaze a trail west into unknown territory.  Our mom had a relatively easy trip.  But now it is Diann’s turn to head west.  ConestogaWagonThe modern-day version comes into play because in our western journey, we have cell phones.  I am able to warn her of trails to avoid and trails to take, but it is still her trip west and her wagon is equipped differently than mine.  And Diann is in charge of her wagon. She will end up on different roads than I took, some by choice and some by happenstance, and all I can do is offer advice when asked and keep quiet when not asked.  And let me tell you, that is no easy task for me!

For example, her daughter, Danelle and I are in recovery with Diann post surgery, and the nurse is going over post surgery information.  It seemed like she was reading a novel, and it was taking forever.  We were mentally and physically exhausted, and our blood sugars were running low.  The nurse told Diann that her arm may be numb because of the cutting of the nerves from the lymph node removal, but it will get better.  Rather than just shutting up, I blurt out, “Heck no it won’t get better.  My arm is still numb three years later.”   I could have chosen better timing for that truthful remark.

And so we all learn as this new journey begins…

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In honor of a new journey, http://www.hellocourage.com has a new logo:

LogoHelloCourage2015

My Sister’s Advanced Breast Cancer Diagnosis – Dense Breast Tissue the Culprit

My sister, Diann, has Stage 3 Breast Cancer – a 3 cm tumor that has infiltrated to at least four (4) lymph nodes.  We were shocked as it was so much more advanced than we thought.  The culprit of not finding it sooner – DENSE BREAST TISSUE.

Anyone who has read my blog for any length of time knows I am constantly preaching about DENSE BREAST TISSUE.  If you have it, you can be Stage 4 before you know anything is even going on as often tumors are not picked up on mammograms. Dense breast tissue appears white on mammograms and so do tumors.  I’ve heard from COUNTLESS women about this fact many have gotten their yearly mammograms and got the all clear right up until diagnosis.  Now, my own sister had dense breast tissue, didn’t realize it and was told only once by our family doctor back when she was having children in her 20s and 30s.  She really did not know what that could mean for her and was never told.  On her regular mammogram, which was a 3D technology/tomosynthesis mammogram which is supposed to be better at detecting tumors in dense breast tissue, an area of compressed tissue showed.  That’s all.  THANK GOD our local hospital biopsied, not because they thought it was cancer, but based on family history of my diagnosis and my mom’s diagnosis, they wanted to make sure nothing was hiding behind that area.

Well, hiding it was.   Diann’s breast surgeon at the University of Michigan says it is a 3 cm tumor (well over an inch in diameter), and she could not even feel it in my sister’s breast, and Diann is a B cup.   I mean that seems almost impossible to believe!   Diann said because of me, she gave herself breast exams weekly as she was so paranoid.  She never felt a thing.

Now Diann is forced to endure surgery, chemotherapy, radiation – thankfully, she was Her 2 Negative, so she will not need Herceptin.  They will do a Lumpectomy first, then treatment, then after the genetic testing comes back, she may opt for a double mastectomy with immediate reconstruction after everything else is finished.

This makes me MORE DETERMINED to get the word out there about dense breast tissue.  It is not something easy to talk about it.  If you post it on Facebook, some uninformed men make lewd comments – I have had it happen.  But the discussion is necessary.  Your life depends upon it.

This from breastcancer.org about dense breast tissue:

Dense breasts have less fatty tissue and more non-fatty tissue compared to breasts that aren’t dense. One way to measure breast density is the thickness of tissue on a mammogram. Another categorizes breast patterns into four types depending on which type of tissue makes up most of the breast. Still, no one method of measuring breast density has been agreed upon by doctors. Breast density is not based on how your breasts feel during your self-exam or your doctor’s physical exam. Dense breasts have more gland tissue that makes and drains milk and supportive tissue (also called stroma) that surrounds the gland. Breast density can be inherited, so if your mother has dense breasts, it’s likely you will, too.

Research has shown that dense breasts:

  • can be 6 times more likely to develop cancer
  • can make it harder for mammograms to detect breast cancer; breast cancers (which look white like breast gland tissue) are easier to see on a mammogram when they’re surrounded by fatty tissue (which looks dark).

Twenty-two states have laws that say women who have dense breast tissue must be notified.  Obviously, this doesn’t always happen.

So what to do?

1)  Ask the question of every health care provider you have if you have dense breast tissue.

2)  If you have dense breast tissue, even if your mammogram comes back okay, INSIST, INSIST, INSIST on an ultrasound.  Call your insurance company.  Tell them you have dense breast tissue.  In most cases it covers.  If it doesn’t, ask to talk to a Supervisor.  If you can’t get them to pay, do it anyway.  Make payments.  Your life is worth it.

3) If anything is questionable on the ultrasound, INSIST, INSIST, INSIST on further testing.  What is further testing?

A breast MRI or the newest technology – Molecular Breast Imaging (MBI).  I just wrote about this technology in February, 2015 as recent studies have shown it quadruples detection of breast cancer in women with dense breast tissue!!  https://denise4health.wordpress.com/2015/02/04/molecular-breast-imaging-mbi-quadruples-detection-of-breast-cancer-in-women-with-dense-breast-tissue/

PLEASE, I beg you, have this conversation with your doctors, with your mammogram provider, and with your friends.  It is absolute hell to watch my sister go through an advanced breast cancer diagnosis.  It is far worse emotionally than my own diagnosis was.  You do not want any one you love to go through this when it could be prevented.

Breast Cancer Strikes My Family Again

My only sibling, my sister, Diann – not just my sister, a best friend to me, a confidant, a mom of three, a young grandma, was diagnosed with breast cancer this week at age 55 – the same age I was when diagnosed.  I am  absolutely devastated as is the rest of my family, especially her kids.  As many of you know, my mom was diagnosed just last June, 2014 with breast cancer.  I was diagnosed in October, 2011.  We are all that is left of our nuclear family.  My dad died from pancreatic cancer at age 65.   Especially, I feel for my 81 year old mom who lost her husband to cancer, is a breast cancer and melanoma survivor herself, and now is now forced to watch her second daughter fight breast cancer.

Diann and I took one look at the doctors face as she entered the room, and we knew before she told us.  As we sat in the same place at our local hospital where all of us received “the news”, no one could believe it, including the nurses and doctors.  I feel so distraught, more than I did with my own diagnosis.

So once again we are forced to face this.  The only thing that makes it easier is we know what to do and who to call.  My Oncologist agreed to take Diann as a patient even though he is not currently accepting new patients, and my mom’s surgeon will perform whatever Diann needs for surgery.  We will be putting thousands of miles on our cars making the drive to the University of Michigan Comprehensive Breast Care Center in Ann Arbor, Michigan.  The geneticists at University of Michigan thought it was a fluke that both mom and I got breast cancer.  When we made the first call to the Breast Care Center, the nurse said, “I have already put the geneticists on alert.”

It baffles me because family trees on both sides of the family have been done back generations, and no breast cancer on either side of the family.  How did three of us end up with breast cancer???   Did the relatives just die young before they were diagnosed.  Did they have huge tumors in them when they died of something else?  Was it environmental?  Did I grow up in a cancer cluster?   Was the electric tower across the street from my neighborhood the culprit, or what?  The questions keep swimming in my head.

My sister and I are very different.  She is very private, while I didn’t hesitate to blab my cancer journey to the world.  Diann trusts her doctors and doesn’t want to read much about her diagnosis (although she will not know much until next week).  I read everything I could, and in retrospect, most things I should not have read.  Diann likes to stay busy and will probably try to work as much as she can during whatever treatment is necessary for her, while I had to process things more quietly.

Diann will have to face this journey alone as it is one lonely journey as many of you know firsthand.  I already promised her I will not try to force my way of handling breast cancer unto her, which as the older sister, is always my temptation.  Everyone keeps telling us it is good Diann has me to help guide her.  That may be true to some degree, but every cancer journey is entirely different.   Certainly, I know this from hearing from thousands of cancer patients.  I’m just so angry…I didn’t want Diann to be one of them.

My family would appreciate your thoughts and prayers.  So many of you are like family to me and have become friends over the years…Thank you!!

Honoring Alma Sanchez on Triple Negative Breast Cancer Day – March 3, 2015

Alma-Daughter (2)Hello Courage and denise4health honor Alma Sanchez on Triple Negative Breast Cancer Day on March 3, 2015.  Alma wrote her story on my Blog for 2014 Triple Negative Breast Cancer Day.  Her story, a young mom only in her 30s with triple negative cancer went viral.  Then Alma received the devastating news, a few months after her blog post, that she now has Stage IV Triple Negative Breast Cancer with metastases to her lung.

https://denise4health.wordpress.com/2014/03/03/triple-negative-breast-cancer-a-young-moms-story/

Alma is the most courageous woman I know, and I have been fortunate to meet plenty of them – so many of you are beyond courageous!   But Alma stands out – her faith, her courage, and the fact that even with her first go round with cancer, she had to fly from her city in Mexico to Houston for surgery and other medical visits.

When Alma was diagnosed as Stage IV, she was in a chemo-based with experimental drug Clinical Trial in Houston– she and her husband flying back and forth once again so she could be with their small daughter, sometimes so sick she didn’t know until minutes before if she could board the plane.   Alma would leave the hospital chemo chair and go to the airport.  Alma’s cancer had progression during the Clinical Trial in Houston.  These flights are outrageously expensive.  Plus, because she is going between countries, her insurance often does not pay for coverage which results in staggering medical bills.

Alma is awaiting confirmation for a Clinical Trial in Los Angeles because Alma and her husband NEVER GIVE UP and are amazing, courageous, and inspiring people!     Alma is a woman of great faith.  Alma’s faith and courage shine through.  I literally just got this message from Alma while I was writing this, so you can see for yourself!!

From Alma –

“Hi my friend! I’m right now traveling back to LA! They still don’t have official confirmation from Genentech (the company behind the Clinical Trial) but they told me I don’t have anything that could exclude me, and they scheduled me for tomorrow to receive treatment. They think they’ll get confirmation today. We are taking a leap of faith, and we are now flying through 2 airports in Mexico and 2 airports in the USA to get to Los Angeles. Pray for me, dear friend, that I can receive treatment tomorrow…and that it works for me…not only because of me, but for the millions of women who today need a better treatment than chemotherapy . Trusting God, we start this new journey.”

Please say a prayer for Alma and her family as this next round of Clinical Trial challenges begins.  The Clinical Trial that Alma will be participating is an immunotherapy clinical trial which hopefully will prove to be a major breakthrough in Triple Negative Breast Cancer and many other cancers.   This video does a fabulous job of describing how it works!  Thank you, Alma, from all of your breast cancer sisters, past, present and future.

http://blog.biowebspin.com/dan-chen-pd-l1pd-1-pathway/

Actress Kathy Bates, Lymphedema Spokesperson

Kathy BatesMarch is Lymphedema Awareness Month so I was absolutely thrilled to see that Oscar-winning actress, Kathy Bates, is a spokesperson for Lymphedema.  Ms. Bates had breast cancer with a double mastectomy with many lymph nodes removed.  As a result, she has Lymphedema in both arms.   Her recent February, 2015 appearance on the television show, “The Doctors”, was extremely informative.  Plus, the doctors added much to the discussion as did Ms. Bates own Lymphedema Physician.  As a fellow Lymphedema sufferer, I am so happy she is informing the public of this condition and reaching out to women who may have Lymphedema but have not gotten proper treatment!

Please watch this educational video!  It is worth the time to do so!

New Spring Arrivals at http://www.hellocourage.com  Marchcollage2015a

Molecular Breast Imaging (MBI) Quadruples Detection of Breast Cancer in Women with Dense Breast Tissue

Molecular Breast Imaging (MBI) could save your life if you have dense breast tissue.  New studies were recently released that confirms that it is nearly four times as effective in detecting breast cancer in women with dense breast tissue:    http://www.sciencedaily.com/releases/2015/01/150123101604.htm   NewTechnologySign I did not know this technology existed until about two months ago, even though it has been around for several years.  Not many hospitals have this technology.

On my Facebook page, I posted that Susan G. Komen of NW Ohio had grant money available in my area for uninsured or underinsured women for mammograms.  A friend saw the post.  Her husband lost his job, and they have been without health insurance for quite some time.  She had not had a mammogram in two years which greatly concerned her and found she was eligible for the mammogram.  At the small hospital where she had the mammogram, she was told she had extremely dense breast tissue. so they wanted her to go to a much larger hospital (Promedica Toledo Hospital) for Molecular Breast Imaging (MBI) which would also be funded by Susan G. Komen of NW Ohio.

My friend went for the test not knowing what to expect other than she was told dye would be injected into her bloodstream and mammograms would be taken with the dye present in her system.   Here is a good explanation of what occurs:    https://www.karmanos.org/?id=517&sid=1

My friend said the test consisted of four images and each one lasted seven minutes.  She said the hospital staff did many things to make her as comfortable as possible.  She indicated that you sit for the test (some technology has you lying down), they had a television and reading material while the test was being administered to help distract you.   The Radiologist told my friend that the previous mammograms she had since age 35 were virtually useless in her case because her breast tissue was so dense.   The Radiologist saw “a small spot” on the MBI and immediately gave her an ultrasound.  She finally got the “all clear” and the Radiologist told her after the test was completed, that she would need Molecular Breast Imaging (MBI) technology every year for breast cancer detection purposes.  My friend is so grateful that her care was not “short changed” because she was on a Komen grant.

In this video, Dr. Christine Granfield, a Radiologist, gives her view on Molecular Breast Imaging: https://www.youtube.com/watch?v=q-1KIevhwao

So women with dense breast tissue, please take note of this test and pass the word to others!!  I’ve received so many emails from women with dense breast tissue that were not diagnosed until Stage 3 or Stage 4 because their tumors went undetected.  If you have ever been told you have breast dense tissue, I urge you to talk with your doctor and see if this technology is available near you.

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