It was a Sunday morning...

Editor's Note: We are honored to have A.W. Gryphon share her story of diagnosis with us.
Allison W. Gryphon is an Author, Filmmaker, Creator of The Why? Foundation and a Breast Cancer Survivor. You can also find her on facebook >>

It was a Sunday morning. I’d been up early for a pilates class and I was just out of the shower. I had brunch with my friend Joaquim and a matinée with my standing weekend movie buddy, Elissa.

Getting dressed, I went to put my bra on and it didn’t quite fit right. I re-adjusted and then I froze. I was standing in front of my closet in a small room that suddenly seemed massive and empty… and painfully quiet. I think when someone feels a lump for the first time and they know in their gut what it is, the world does truly stop spinning, just for a moment. Just long enough for you to hear your own heart beating, to feel what it means to take a breath and to know not only the full weight of your body, but of your being.

It was Sunday morning so there were no doctors to call or appointments to be had. It would be something to be taken care of the next day. Everything would change. I knew that. So I got myself dressed and went out for a lovely brunch with Joaquim then off to see Julian Schnabel’s new movie with Elissa. I said nothing to my friends and it was a wonderful. The presence of the lump was never far from my thoughts, but I wanted a day of love and friendship, not fear and concern.

My Monday began with a trip to an Urgent Care Clinic, the fastest way I could get the referral for a mammogram. I was at a highly recommended breast center at 7am Tuesday morning. First there was the mammogram, during which the technician suggested we take a few extra views for the doctor, then came the ultra sound, then the doctor, then the second ultra sound and then the smile. That smile of hope and encouragement and knowing how much trouble I was in that I will never forget. “We’re going to do a needle biopsy.” The wonderful doctor said kindly taking my hand and meeting my eyes to hers.

I don’t know how to describe what was going through my head at that moment. Everything. Nothing. I knew what it was and I knew it was happening, but I hadn’t connected those thoughts. It was like I was watching a movie, but it was me.

The following day, I went to work. I went to normal. That’s what I needed to do. Just before lunch my phone rang. It was the same lovely doctor who’d done the needle biopsy the day before. “We were all pulling for you.” She said… And then she told me what I already knew was coming.

It’s one thing to know what’s coming, it’s another matter all together to hear someone say it out loud. Someone you don’t know, but who in one instant will have changed your life forever. I know that what followed were words of support and encouragement. I don’t remember them. I do remember hanging up the phone and looking at the buttons, not quite sure what to do with them. The room was heavy and there were people on the other side of my closed door waiting. People who had assured me that everything would be ok, not just for me, but for themselves. There were friends, colleagues, people I cared about and people I didn’t know out there. Everyone who the explosion was going to hit once I opened the door.

It took almost a half hour. I looked at the door for a long time. It was real for me, but once I opened that door it would be real outside of that room.

The first person I saw was Jude. She was sitting in a chair right outside wide-eyed and steady. I’m not sure if they were all there already or if they heard me come over, but within a moment Shannon, Mary Beth and Jackie were looking back at me amongst a busy office full of people who were about to find out.

I don’t know if the assault of the cancer on me or of the news on everyone else was more jarring. What I do know is that’s the day where I found out what I was made of and when I found out who all of the people on the other side of that door really were.

It was the most devastating and beautiful day of my life. And that is how my battle with stage IIIa breast cancer began on Wednesday April 13, 2011.

A new Mom's cancer struggle

I learned the truth of the saying “It takes a village” shortly after the birth of my daughter Lily on August 4, 2005. Although she was born by emergency C-section, both of us appeared healthy.

Lily was indeed a happy, robust baby, but within weeks of her birth, I knew something was wrong with me beyond the usual new-mom exhaustion. Doctors subjected me to a battery of tests, and on November 21, 2005, only 3½ months after Lily’s birth, I learned I had malignant plural mesothelioma.

Also known as mesothelioma cancer, this disease attacks the lining of the lung. Its primary cause is asbestos exposure, which I must have encountered at some point in my childhood.

Given 15 months to live without treatment, all I could think about was Lily growing up motherless. Theprognosis for mesothelioma is poor, so I opted for an aggressive course of treatment. My husband and I went to Boston, where on February 2, I underwent a treatment for mesothelioma known as extrapleural pneumenectomy, surgery in which my left lung was removed. I spent 18 days in the hospital following the procedure and two additional months recovering before I began chemotherapy and radiation.

But I wasn’t just a cancer patient—I was a new mother as well. Without the support of our village, we wouldn’t have made it. We learned who our true friends were: some people we depended on were nowhere to be found, while others we didn’t even realize were part of our village generously offered their love, assistance, and prayers.

While my husband and I were in Boston, my parents cared for Lily back in my childhood home of South Dakota, where a village surrounded them as well. Girls I used to babysit now babysat Lily while my parents worked. Members of the church I’d attended and people I grew up with were there for my parents as well.

In Boston, my husband and I found support with new friends, many of whom were dealing with the same challenges that we faced. My mom emailed me photos of Lily’s milestones: moving from bottles to food, scooting, and rolling around. After my husband printed the photos, the nurses would pass them around and exclaim over them. I never lost sight of the fact that I was fighting for Lily.

Today, we live far from my parents and sometimes don’t see them for months, but they are deeply bonded with Lily. We all learned a lesson about the fragility of life and the importance of embracing the moments we have.

I try to embrace the good things that came from my cancer diagnosis. One of those good things was the awareness of my village, a network of love support stretching from Boston to South Dakota and beyond. I am so thankful for all the wonderful things people did for my family and me.

To learn more about malignant mesothelioma, click here >>

Do you have a story to share? Send us an e-mail or leave us a note in the comments.

How long should a cancer diagnosis take?

Patients are frequently frustrated by the length of time it can take to get a clear cancer diagnosis. They are left in limbo and fear since they know something is wrong, but not exactly what and therefore can have no plan of action.

Often the first signs of an abnormality are non-specific and difficult to pin down or identify:

• Cancer may present with fatigue or weakness only, which everyone experiences at one time or another.
• There may be non localized pains, a nagging cough, a small lump or other signs and symptoms that aren't pursued initially or take some time to find. It is not uncommon for weeks to elapse from initial symptoms to the start of the diagnostic work up.
• Some cancers, for example early colon cancer, can have no symptoms at all, and only be discovered incidentally or by screening (colonoscopy).

Once an abnormality is found, further laboratory tests or diagnostic imaging are usually used to further evaluate it:

• These tests often take a day or two to run (clinical lab tests), or several days to schedule and perform.
• Then a biopsy (in the case of a solid tumor) or blood sample (in the case of leukemia or lymphoma) is usually taken. A biopsy of a solid tumor such as a breast biopsy is usually performed by a radiologist or surgeon and this can take days or weeks to schedule.
• Once the biopsy is performed it goes to the Pathology laboratory for analysis to determine if it is cancer, what type exactly and what prognostic features it has. This usually takes 1-3 days of work and may entail sending the biopsy specimen to other specialized labs to detect specific features that may determine which kinds of treatment are appropriate and this could take additional days or even weeks. Every tumor in every patient is unique and some are very difficult to diagnose based on current medical science and could require the review by a pathology specialist who studies only one kind of tumor. There may only be a few of these specialists in the country and this kind of review could take additional days or weeks. For more information visit, The Pathologist's role in cancer diagnosis and care >>
• Once the diagnosis is made, evaluation by oncologists is necessary to determine the exact type of treatment necessary. These appointments can take days to schedule and more than one opinion is often necessary to get the plan solidified. Sometimes a particular treatment (eg. neutron beam radiotherapy) is only available in a few places in the country and getting into these treatment facilities can take days or weeks. For more information visit, Cancer: What's in a diagnosis?

Thus it takes quite a while to get a diagnosis and get started with the best treatment. Fortunately most cancers are quite slow growing and have often been present in the patient for years prior to diagnosis and so a few weeks delay usually has no outcome consequence, but delays are clearly associated with emotional stress and turmoil.

Although it may not feel like it, your team is working very hard to get a timely and accurate diagnosis for you. However, as with all your health care decisions, if you ever feel as though you are falling through the cracks, speak up.

You might also like:

• Scientifically speaking, what is cancer?
• Cancer: What's in a diagnosis?
• The Pathologist's role in cancer diagnosis and care

Breast cancer patient navigator achieves nationwide status

Andrea receives her certification at the NCBC Conference as a breast navigator in Imaging and Cancer Care. Pictured with Karry Trout of Mason General Hospital, who is the Diagnostic Imaging Breast Navigator and who also received her certification.Editor's Note: We are excited to announce that Andrea Potter, our breast cancer patient navigator, has earned certification through the National Consortium of Breast Centers in the fields of Imaging and Cancer Care.

The Breast Patient Navigator Certification Program is a certification that has been developed by a peer review team of the National Consortium of Breast Centers (NCBC). The purpose of this certification is to set standards of achievement and the professional's role; enhance patient safety, quality of care and delivery of services; and recognize professionals who advance beyond basic knowledge in a field of specialty.

What does that mean for me, the patient?
Moving a patient through a breast care/cancer continuum is a complex and highly individualized process. The complexity is significantly reduced with the assistance of an individual who is trained to navigate a patient through the processes of care, often referred to as a breast patient navigator. However, just as the breast care/cancer diagnosis and treatment process may differ from facility to facility, so do the definitions, activities, knowledge and job descriptions of a breast patient navigator. These disparities can adversely affect the breast care/cancer treatment provided to women across the nation and around the world. In an effort to minimize and eventually eliminate the variances in a breast patient's continuum of care and the definition/function of a breast patient navigator providing care within that continuum, the NCBC created this program.

In plain terms:

• I was able to network directly with Breast Navigators all over the country meaning I learned about new information for Breast Cancer patients. From radiology equipment, lab testing, treatments, and more!
• New information brought back from the conference has allowed me to build and re-outline my program so that I may be able to navigate more patients than previously done so that less women may "fall through the cracks".
• I am now a member of the NCBC which will allow me to continue networking with other navigators from a distance.

If you would like to get in touch with me, please call at 360.493.4746.

2nd Annual Cancer Survivor Celebration

Join us! If you currently have cancer or had it in the past, you and a guest are invited to attend our second annual cancer survivor celebration. This free event will feature a keynote speaker plus informative presentations about wellness, survivorship and more. Breakfast and lunch included.

2^nd annual Cancer Survivor Celebration
June 2, 2012, 8:30 a.m.-2 p.m.
Heritage Room, 604 Water Street, Olympia
Register>>

Keynote Speaker: Cancer Survivorship and Quality FOR Life: Shaken, Stirred, Movin’ On! - Brad Zebrack, PhD, MSW, MPH

Presentations and speakers

• What’s New in Diagnosis and Treatment - medical oncologist Jim Lechner, MD; radiation oncologist Jim Raymond, MD; pathologist Rich Whitten, MD
• Natural Therapies for Post-Chemo and Radiation Symptoms - Chad Aschtgen, ND, FABNO
• Family conversations about legal concerns - Jonathan Sprouffske, JD
• Living Well with Cancer – palliative care physician Gregg Vandekieft, MD; psycho-oncologist Cobie Whitten, PhD
• New! Patient Panel