Grief: "The Box"

The work as a cancer advocate can be quite rewarding - but it has its challenges too. For the majority of my short time in this arena, I have been able to meet patients at the beginning of their journeys; just finding out their family history, encouraging them to undergo testing, a "mutation positive" result, preventive surgeries (my personal favorite!) or a newly diagnosed cancer. 

But recently it seems the reality of working with cancer is catching up to me. Not everyone survives. In the last year I have worked with several terminally ill women who have undergone genetic testing to give knowledge to their families, in hopes that maybe there was an answer for their cancer. I have found myself playing more of a supporting role through their final days - and also through the family's transition to a "new normal".

As I've spent time with these grieving families - I've taken some time to reflect on my own experience with grief.  I don't believe grief is some "cycle" that can be completed. Grief is not a tunnel that we walk through and other the other side we're just "over it", grief is ongoing.  

The question I've been getting a lot is "How?" How do you move on? How do you stop crying? How do you not think of them 100% of the time? How do you find happiness again?

“The Box”

Sometimes your mind puts painful memories into a “box” in the back of your mind. A compartment where memories can be filed and visited.

 The box is always there, but you learn to talk about a difficult experience without the raw memories in that box escaping. You see, when you first lose someone, the box hasn’t been built. The emotions and memories run wild. You may be having a great day and a thought, a song, or even a person may send you spiraling back into inconsolable heartache and sadness. 

Our “box” is our way of surviving, because I can tell you, there’s no way a person could go on to live without the box. You feel like a victim of your own life, you’re at the mercy of everyone and everything around you – but you’re not sure what to fear day to day. You long to go to the grocery store without crying, you hope the radio doesn’t play “your song”, yet you hope someone mentions their name just because it’s a comfort to know others think about them and miss them too. 

The box can be a scary place. You fear losing the memories. You want to keep every memory of them, even the hard ones, alive – because in some weird way, if the memories are alive, they’re not entirely “gone”. The only thing worse than remembering your loved one, is the fear of them being forgotten.

As months and years pass, you will notice that you are able to pinpoint what your triggers are, maybe a date/anniversary, a holiday, an item. You will be able to prepare your heart for the pain that day will bring. You will know who you can be around and who you want to avoid. You will find that your loved one’s favorite Mexican restaurant will not be a place to avoid on their birthday – but rather a destination to celebrate their life and memory. 

The things, people, and places that were once “triggers” are now “comforts”. I don’t know exactly when that crossover happens or that there’s a definitive point – but it happens. 

The box makes it possible.

The box cannot be neglected, the box needs to be visited and maintained. This is why grief is ongoing – grieving never ends. The memories in the box may be a blend of really graphic, hard, “negative” times. Perhaps the actual death of the person you loved – a struggle or battle they fought. In my mom’s case, it’s thinking about what chemo did to her mind and body, memories of holding her hand and remembering the texture of her skin and certain glows in her eyes. I knew she was dying. I forced myself to make mental note of the way she breathed, the way her voice sounded, what her handwriting looked like. Most, if not all of these mental notes, are housed in the box. 

The box may be home to really happy memories, too. Some of these memories may be the happiest times of your life. You may wonder how this memory ended up in the box – sometimes it’s because your happiest days were with that person. I think this is our heart’s way of letting us find peace. If we compared every vacation, every “jam session” in the car, every cozy night in -- to the ones we had with our loved one, we may never find the same, pure joy again. 

The box is something we need to fully embrace. The box not only allows us to survive, but to thrive. The box allows us to lay our head on the pillow without crying ourselves to sleep. The box allows us to make new memories with those we love, who are still here.  

No Body Part is Worth Dying For

This morning I read about another BRCA sister who lost her life. She knew she carried a BRCA mutation before she was diagnosed with cancer, but never opted for any preventive actions.  As I read comments from her family and friends, one stood out to me “No body part is worth dying for.”

No body part is worth dying for. Wow.

When I went in for my bilateral mastectomy at age 22, I had a 10 month old little boy, Peyton.

I had more than one health care professional remind me (in various ways: questions, comments, informed consent) that this surgery meant I would not be able to breast feed Peyton or any future children. This surgery meant the “equipment” we as women are given to sustain life, I would no longer have.

My friends and family had their way of reminding me too – “are you excited for your new boobs?” “How big are you going to go?” “Is it going to hurt?”

I would say these questions came as a combination of trying to make conversation, ease my anxiety, and general curiosity and/or misunderstanding about what a mastectomy is. I wasn’t offended – I just knew I needed to be open about my experience for them – and for myself too.

From my medical team, the constant reminders were their way of gauging if I knew what I was getting myself into; there are risks and there’s no undo button. They wanted to make sure I knew the finality of my decision.

I did. I accepted whatever the outcome would be, because no body part is worth dying for.

Now some people will say, you only have an “increased risk” – or my personal favorite “we’re all gonna die of something, someday.” One of these days the thought in my head will escape. “I’ll trade you the chemotherapy that’s almost certain in my future, for the peaceful death in your sleep – deal?”

Of course we’re all gonna die someday – but as my friend Denise says “If your airplane had an 87% chance of falling out of the sky, would you get on it?”

We’re all going to die, right. Riiiiiiiight.

If we can do something to prolong our life, maybe see the milestones of starting a career, getting married, having children, and seeing our children reach these milestones – why wouldn’t we do it?

No body part is worth dying for.

So no, cutting off my boobs was not “radical”. It was conservative – a way to preserve my life and health as I know them today.

And planning to remove my fallopian tubes, ovaries, and uterus at age 35 is “extreme” – extremely smart. As two-thirds of those diagnosed with ovarian cancer will die from the disease.

And monitoring those organs every six months until that surgery is not “over the top” – but I can tell you what is “over the top” – the way I’m going to live the life I have.

In 2017, we are going to give more people control of their health and their lives by empowering them with lifesaving genetic knowledge. It’s important to know this information – but to feel empowered and worthy enough to act.

Your life is worth it – No body part is worth dying for.

Genetic Testing 101

By Guest Blogger: Troy Moore, Chief Scientific Officer, Kailos Genetics

Examining genetics for clues to cancer risk

Genetic testing offers new hope to those with a family history of cancer, helping to establish risk levels and pinpointing the best course of treatment for certain cancers.

Yet for all of its benefits, genetic testing is still in its infancy. It’s only been 25 years since the Human Genome Project was launched, and the secrets of human DNA are still being unlocked.

The benefits of genetic testing

Virtually everyone can benefit from knowing more about their DNA, especially if there’s a family history of cancer. You may have inherited more than your father’s unibrow and

Aunt Agnes’s china collection – there may also be a higher risk for cancer.

Because family history is a primary indicator of risk, you should be aware of who in your family had cancer and what types. Without genetic screening, it’s difficult to know if you are in a high-risk category and should start early screenings.

The genetic testing process

Genetic testing has become much simpler than in the past. Not only is it more affordable, but some labs can process a test based upon a simple cheek swab. The exception is if you are testing a tumor – a sample of the tumor will be needed to evaluate those genetic cells.

Almost any type of cancer has a set of DNA changes associated with it. Usually people are tested for specific types of cancer based upon their family history or environmental factors that may contribute to cancer (such as smoking).

Working with a genetic counselor before you are tested can help you determine which tests would be most useful. If your family history doesn’t indicate testing for certain types of cancer, you might consider testing for the most common types of cancer – breast, prostate, lung and colon. There is a strong knowledge base around those cancers, and the tests are well proven. The information the tests provide can be used to set an appropriate screening schedule based on risk.

Once tested, your genetic counselor can also help you interpret the results; for example, the counselor could explain that even though you have twice the risk of the general population for a type of cancer, if the occurrence is very low you probably don’t need to worry. They can also help to provide advice on how to discuss your testing with your family. Because you share the same genes, your genetic test can have implications for other members of the family.

Deciphering variants of unknown significance

The human genome has been mapped, but there is still much to learn about genetic changes, or mutations. After all, there are over three billion base pairs in the genome. Imagine the genome map as a road map that shows major highways and roads but doesn’t include smaller streets. As people travel those unmapped streets and information is gathered, the road map becomes more informative and useful.

This lack of information can be frustrating for people who have variants of unknown significance (VUS). While occasionally the VUS may be totally unique, frequently there just isn’t sufficient clinical data associated with it to know how it affects your risk of developing cancer.

Having a VUS doesn’t necessarily put you into a high-risk category; however, it does mean that a physician won’t be able to use that part of your genetic information to recommend earlier screenings or adjust a course of treatment. However, it is important that this information is cataloged into a public database, so that new insights about each VUS can be shared.

In the past, there was only one company conducting genetic testing and they kept the data they obtained proprietary. However, the National Institute of Health (NIH) has established and maintains a repository where clinical researchers and testing laboratories can deposit information about DNA changes and the criteria they used to make an assessment.

As more patient information is aggregated around a particular VUS, its meaning will become clearer. That’s why growing the NIH database benefits everyone – and helps add information around those gaps in the genome map.

Genetic testing is yielding new insights and understands of the role genes play in cancer risk and treatments. With the growth of this knowledge base, it will become increasingly valuable in the future.

"Information is Power" - Population Screening (Part 1)

Autosomal dominant mutations, like BRCA1 and BRCA2 are inherited at equal rates from mothers and fathers. However, the cancer risks differ between men and women. Currently genetic testing is only recommended to those who have cancer or those who have a strong family history of cancer. Within the high risk, research, and clinical communities there has been a lot of discussion about “population screening” in regards to cancer genetics. Dr. Mary-Claire King (credited with the discovery of BRCA1) has publicly advocated for population screening, recommending all women be offered genetic testing at age 30, regardless of family history.

Population screening is not a new concept, in fact it is often recommended for early detection of cancer. The USPSTF (U.S. Preventive Services Task Force) recommends women get a mammogram every 1-2 years, beginning at age 50. The American Cancer Society recommends mammograms annually beginning at age 45.

Dr. King and Ephrat Levy-Lahad, MD (Director of the Medical Genetics Institute, Shaare Zedek Medical Center, Jerusalem, Israel) led a study in 2014 to determine how the breast and ovarian cancer risk among BRCA1/BRCA2 carriers in the general population compared with that among carriers with a history of breast or ovarian cancer. 

The authors write, "In this study, 51% (85 of 167) families harboring BRCA1 or BRCA2 mutations had little or no history of relevant cancer. These families were small and included few females with mutations who had reached the ages of highest cancer risk. Young women in these families would not have been tested in the absence of a general screening program."

In 2014, Dr. Mary-Claire King challenged Huntsville/Madison County (Alabama) to be the first community to offer free genetic testing to 30-year-old women, regardless of family history. Kailos Genetics, in partnership with HudsonAlpha Institute for Biotechnology, accepted this challenge through a genetic testing program, “Information is Power”. The first free test kits were given out at the 2015 Tie the Ribbons event on October 29, 2015. Free/discounted tests will be available through the Kailos website for one full year, until October 29, 2016 for anyone over the age of 19 who lives in Madison, Jackson, Limestone, Marshall and Morgan counties (Alabama).

To date, Kailos has had over 500 participants take advantage of free or discounted genetic testing. We look forward to seeing what the results of this pilot population screening reveal.

Lila's Story (Land Family, Part 5)

 

In October 2013 my sister Marie tested positive for BRCA2.   This started what was to be a very eventful and busy year for my family.  My mother, Betty a twice breast cancer survivor & I had our genetic testing done in January 2014. We both came back positive.
  When my sister advised me what course of action she was going to do to reduce her chances of breast & ovarian cancer I felt it was extreme.   As I thought about the risks she was facing and possibly what I also could face if I carried the mutated gene, I decided that maybe is was not so extreme after all but wise.  So I talked to my husband - who is a boob man- and decided that if I did indeed test positive I would have a mastectomy and hysterectomy or what I refer to as the Full Monty. 

 When the genetic counselor informed me that I was indeed positive for the mutated gene.  I did shed a few tears.  My tears were more for my three daughters then myself.  I now knew  that they had a 50% chance of inheriting the BRCA2.  When the counselor started to inform me of my options I stopped her and advised her that I had already did my research & was prepared to undergo surgery. Three weeks later I was able to meet the three surgeons that would be performing the operations.  I was fortunate that all the doctors worked in the same medical complex and I was able to meet the whole team at the same time.   They told me I could have all the surgeries performed on the same day I said let's do it.  When one of my surgeons asked when I want to undergo the procedures I said the sooner the better, I had to be ready for elk hunting season in October.  I truly thought the doctor was going to fall out of his chair with my comment.  He then looked at me and said that I was the first woman he has ever had as a patient that said she wanted surgery in the spring so she could hunt in the fall. This must of made a lasting impression because the first thing I remember in the recovery room was the nurse telling me that I would be up & hunting in no time. 

 I was fortunate that I did not have any issues  with my insurance.  I think that the fact that I was 53 years old, BRCA2+ and had a mother that was a breast cancer survivor cleared the way for insurance to play along.

  On March 21, 2014 I underwent the Full Monty in Vail Colorado,   Nothing like having a hospital room with a view of the ski sloops during spring break.  My recovery and fills went smoothly.  On June 5, 2014 (my 9th Wedding Anniversary) I returned to Vail Hospital and  hand my exchanged for my new boobs.   Happy Anniversary hubby how do you like my new boobs? 

The BRCA2 mutated gene has a strong hold in my family, my mother, sister, my 33 year old niece, who I am proud to say is now a breast cancer survivor, and one of my three daughters.  We refer to our plight as the Family Affair.    

 Of the five of us, four have had the Full Monty,  my daughter has ran into some issues with her insurance covering preventive surgeries,  I still hold out hope that they will come around.

  I was the first in the family to undergo the Fully Monty, remember I had to be ready for hunting season so I was in a hurry.  I texted pictures of my progress to my family after every fill.  My family joked that they wanted me to go first so I could let them know if it hurt.    

 We have keep a sense of humor during the last year.  We have our t-shirts that say "Heck yea there fake the real ones tried to kill me."    I have been stopped several time and asked about the t-shirt, I find this a great educational tool and encourage women to get mammograms.  

 In the last year I have discovered several things about my new boobs,  they get COLD,  I live in the highest city in North America & it can snow any month of the year.  I better have a bra or base layer on or I will be walking around with two ice cubes for boobs.   I sure wish someone would invent boob warmers. I have also done a repeat of the hot flashes & night sweats - I told my husband if he ever sees me outside in the snow naked doing snow angles, I'm just trying to cool down. Please don't think I have lost my mind.    On a positive note I do have a  new party trick, I can flex my peck muscles and my boobs move up and down just like the body builders on the beach.  If I'm ever at a nude beach or need a great bar trick this could come in handy.    If I can pass along one thing that I feel will help other going down this road is to keep a sense humor.  Cry when you need to, but laugh as often as you can. 

 As I enter into my second year as a Previous,  I keep moving forward with a smile on my face and perfecting my peck flexes just in case I ever end up on a nude beach.  

Lorena's Story

Since I can remember, I spent a good majority of my time in hospital waiting rooms and cafeterias. My Grandmother (Mami) was diagnosed with ovarian cancer for the first time in 1996, at the age of 59. When she was first diagnosed, testing for hereditary cancer was discussed but the doctors urged against it, asking my family what they would do differently had they found there were positive for this gene. Deciding against it my 4 aunts would go to the doctor every year for routine check-ups, keeping in mind their extensive family history.

For the following 15 years we spent countless days in hospitals, practically a second home. Unfortunately in the spring of 2011, 15 years of fighting and two reoccurrences later, my grandmother passed away in her sleep.

On April 29^th, 2014 lying in bed after a long day of class, my mom walked into the house, much earlier than usual. It caught me off guard, but I didn’t think much of it. Until she walked up to my door and said, “instead of getting a tattoo with teal (ovarian cancer) and gray (brain cancer), we’ll get a teal, gray, and pink (breast cancer) tattoo!” She later said, she didn’t know how to tell her only daughter that she had cancer.

Upon multiple doctor visits, the oncologist told her she most likely was BRCA+ and tested her on the spot. At 42 she was diagnosed with breast cancer, found out she was BRCA1+, underwent multiple surgeries, went through chemo therapy, and radiation. With the love and support of her entire family she received her clean bill of health.

Following her completion of chemo therapy, I decided to get tested. Many of her doctors urged me to wait because I am so young. Finally a doctor agreed, and told me that making the decision to get tested and fight back against this gene was very responsible and mature of me. I got tested following my 20^th birthday, and found out I was BRCA1+ in November of 2014.

At this age, it is difficult to know where to start simply because doctors say we’re too young for MRI’s or mammograms. But making the first step to go into a gynecologist or breast surgeon’s office, gives you a great baseline and will ultimately open your eyes to all of your options. People may tell you “no!” because of your age, but push back and make sure that you feel comfortable with your decisions and options, because KNOWLEDGE IS POWER.

In late June my mother and I attended the FORCE conference in Philadelphia, PA. A group for people who are dealing with or are at high risk for hereditary cancers. It included a great deal of important information, and introduced us to an entire community of support and people dealing with the exact same thing as ourselves. I encourage anyone dealing with hereditary cancers to look for them online or to find support groups nearby.

I am also working with Mollie Smith, who started BRCAn’t Stop Me at Grand Valley State University, to create a branch at my school, Arizona State University. We hope to “raise awareness of the BRCA mutation among young adults and to provide support for young adults who have or are affected by the BRCA mutation.” We hope to see the club in full swing at Arizona State by this fall or spring 2016.

Feel free to follow me on tumblr where I keep track of all my doctor appointments, group involvement, and other BRCA related information.  http://lorenaslyfe.tumblr.com/

 

 

Irene's Story

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It was 2013 when I got a call back from my Dr's office stating that I had calcification in my right breast. I was shocked and scared.  Dr's sent me to get a biopsy.  It turned out that I had invasive DCIS. 

My Dr was unwilling to test me, so being proactive, I self refereed myself to a genetic counselor. Being Ashkenazi Jewish puts me in a higher risk for having the mutation. It was a week or so after my lumpectomy when I got my results. I was BRCA2 positive. 

  After six months of grueling chemo and much research, I made the decision to have a bilateral mastectomy and an oopherectomy in order to greatly reduce my risk of breast cancer reaccurance. Being a mutant also increases contralateral breast cancer up to 65%. The decisions that I made were the best decision that I could have ever made for myself and for my family.