“My daughter Destiny is 9 and she has Neurofibromatosis (Nf). All I do is tell her story and I spread awareness to whoever will listen. You would be surprised how many doctors and nurses that don't know what Nf is for instance here is my daughter's story.
Destiny was 10 months old when she was trying to walk. She took 2 or 3 steps and then she sat in the floor crying, there was nothing I could do to console her. Finally, after a while, I took her to the emergency room. While there they examined her and found that she had multiple fractures in her right leg and they saw the cafe au lait spots and said that they were bruises after she was misdiagnosed for child abuse.
Child Protective Services took her away and 2 days later she was seen by an orthopedic who diagnosed her with Nf. Her broken leg was tibial dysplasia and psuedoathrosis which is a congenital bone defect that sometimes occurs with NF. That's how I found out my daughter had Nf.
Destiny has had several surgeries to repair her leg but none of them helped and 2 years ago when she was 7 she had her foot amputated and she now wears a prosthetic leg as a result. She was also sent to a neurologist who found the tumor on her brain stem and the optic glioma on her left optic nerve. My daughter has to have a MRI every 6 months.
All I do is tell her story. I do it because I want the world to know what nf is. If the world knows there can be no more mistakes.
Destiny likes to read, draw, sing ,dance. She loves babies and video games and loves animals.
for all Destiny goes through she is a true inspiration to everyone. She may have Neurofibromatosis but that doesn't stop her from striving to be that best that she can be everyday and touching everyones life in the process.
Posted by Meaghan on Tuesday, May 19, 2009
Recently I was contacted by National Awareness Coordinator,Mesothelioma Cancer Center and asked if I could help spread awareness about this terrible cancer. Please take a minute to read this guest post and share it with friends and family.
Mesothelioma is a type of cancer that forms in the lining of organs. This type of cancer occurs most often in the lining of the lungs (pleural) but can also form in the linings of the stomach (peritoneal) and heart (pericardial) as well. The only known cause of mesothelioma is exposure to asbestos, a substance that was used widely throughout the 20th century in a number of industrial applications.
This type of cancer has a very low survival rate because mesothelioma symptoms lay dormant for 25 to 50 years after asbestos exposure. By the time the cancer is diagnosed it is usually too late for treatment to be effective. But, while the usual mesothelioma survival rate is less than one year from the time of diagnosis, cases of patients living past their predicted survival date are continuing to surface. With each survivor story that comes to light, current mesothelioma sufferers are gaining a little more hope about their future.
There have been a number of mesothelioma victims that have lived far beyond the typical one year survival period and a handful that have even been cured, with no trace of the cancer many years after treatment (though recurrence is always probable). This has perplexed many medical professionals as they experience difficulty in explaining why some mesothelioma patients survive and others do not.
Research shows one common thread – the immune system. Studies of those who have either survived or been cured of the disease reveal that most of these patients took part in some sort of treatment that improved their immune system. Some treatments incorporated clinical trials in immunology while others involved alternative therapies dealing with the immune system.
One case where this immune system theory proved true was with a man who was diagnosed with mesothelioma at age 58 (no name was given in the report*). He had a chest wall resection performed after he was diagnosed and has had no symptoms or recurrence since. His doctors think there was "moderate host inflammatory response" and that spontaneous regression may be an immune-mediated phenomenon" - in other words, his immune system played a role in his survival.
A number of mesothelioma cancer survivors have posted their stories on the Internet and have spoken to patients and their families with the hope of providing a brighter outlook for their future.
*Pilling, J.E., et al., Prolonged Survival Due to Spontaneous Regression and Surgical Excision of Malignant Mesothelioma, Ann Thorac Surg, 2007; 83: 314-5.
Posted by Meaghan on Friday, May 15, 2009
My Awakening – Kimberly Doyle-Eberhard
In July of 1998 I had my first daughter, Faith. I was a single mom but very determined that she and I were going to have the best of everything. I would work hard to give her everything I never got as a child. After her birth, I was well on my way until I hit a big, brick wall.
At my 6 week post partum visit the OB/Gyn informed me that my thyroid felt enlarged and referred me to a Endocrinologist. Rather than hesitate, I made an appointment quickly. My first appointment was the regular, blood work, ultrasound, etc. The physician told me that there were multiple goiters and he wanted to monitor my TSH level and do a needle biopsy. A few weeks went by and I went in for the biopsy. It felt like a hundred years waiting on the results. Good news, it was negative. So, the plan was to continue monitoring my TSH and do ultrasounds every six months.
We continued that plan until 2002. Late 2002 I had my normal follow up. I told the physician that it was starting to feel like I had something caught in my throat. We knew the largest goiter (golf ball size) had been growing, very slowly. So, we made the decision to go in and remove the entire thyroid. We scheduled surgery and in December 2002 I had my entire thyroid removed. I went in for my regular post-op visit on December 17, 2002 and my life was forever changed. My physician walked into the room as white as a ghost. Here, on my 29th birthday, he had to tell me that the pathology came back showing cancer. I sat in complete shock almost thinking he was joking. I kept waiting for him to say “just kidding”. Instead, he took his time explaining what our course of action was going to be. I was sitting in this room all alone thinking about my daughter. It felt like everything was closing in and I was on the verge of collapse. Then, something changed, my fight instinct took over and I decided this was not going to get the best of me. I had a daughter to raise and I was going to be around for her.
So, we scheduled internal radiation in January of 2003. I had to go off of my medications and begin a low iodine diet. Radiation for the thyroid is very different than any other. You take a radioactive pill as an in-patient. This pill make you, the patient, radioactive. You are put in a room that looks like quarantine and the nurses and doctors are only allowed limited contact. I was in the hospital for 2 days. Upon being released, I was not allowed around my daughter for almost 14 days. It is imperative that the radiation not be passed to pregnant women or children. Being away from my girl was harder than the actual diagnosis and treatment. I had never felt so alone in my life.
The next few years included blood tests every few weeks and Nuclear Thyroid Uptake Scans every six months. Each time, everything looked okay so we stayed on the regular course of treatment. Synthroid 200 mcg.
In March 2007 I had my second daughter, Grace. Throughout my pregnancy we carefully monitored my TSH and I never had to change my dose. We did have to put off my scan for 2006 due to the pregnancy.
In September 2007 I had to see a new doctor because we moved to Colorado. During my first new patient appointment we went through all of my history. I also had new blood work drawn. The bloods work came back showing elevated levels of thyroglubin. The doctor ordered and ultrasound. This was the first ultrasound I had since removing my thyroid. A few days later I received a call that the doctor wanted me to come in and discuss the results. At that appointment I was told that there was a mass in my throat and it was in an area that can’t be biopsied. We scheduled a Nuclear Thyroid Scan to see if this mass would uptake any radiation. We did the scan, got the results and thankfully there was no uptake. So, the advice of the physician was to get another ultrasound in six months.
We moved to west Virginia in May 2008. I immediately scheduled an appointment with an Endocrinologist. At my first appointment we did an ultrasound. I have to tell you, I was not pleased with this physician at all. He took literally one minute to do the ultrasound and then said, “I’ll see you in a year”. I left his office distressed. If the physicians in Colorado could see this mass, how is it gone? So, I have spent the last year contemplating what to do and hoping that this WV physician is right.
Rather than put my life on the line I have scheduled this years appointment at UVA in Virginia. I am taking all of the films from Colorado and all of my past medical records. I am certain we will do an ultrasound. I just have to pray that there hasn’t been any growth. If there has and I waited a year for this second opinion, I will be devastated. The appointment is June 3rd and I am praying that the mass is merely scar tissue and no a recurrence.
I thought I was living life before the cancer. But, in hind sight I see I wasn’t living, I was just breathing. Although cancer is not a mere medical condition, I feel blessed that it opened my eyes to see the wonder that is in front of me. I live each day now as if it were my last. I love deeper, harder and more unconditional. I appreciate things that I used to disregard. Most importantly, my relationship with my girls is key to my continued growth and strength. Now I just want to be able to open up and share my story so others can see that the “C” word doesn’t have to be a death sentence, it can be an awakening.
At the age of 14 I never thought I'd have to ever face what I would. I was a fun loving teenager playing competitive soccer, had tons of friends and loving life..... December 14th 1998 changed my life forever.
December of 1998 I couldn't get over being sick, I'd gone to the doctor 4 times and they had sent me home with various viruses and infections and of course the medicine to treat these. By the 5th time it was pretty apparent that it wasn't a virus or an infection, or if it was it was something nasty! I finally got in to see a real doctor (not a PA) and after poking at me for about 10 minutes he decided that he needed to take some x-rays to see what was going on in my lungs because they sounded pretty bad. I went back and had a few s-rays taken of my neck and then my chest...... I had no idea what was going on. About 45 minutes passes and the doctor came in and asked my sister (who had taken me to the doctor) to call and get my parents there as fast as possible. At this point I still didn't think anything was too wrong, I've since learned that anytime a doctor asks to have anyone called in it's not a good thing.
My parents showed up about half hour later and the doctor asked them to go into his office with me, he put the x-rays up on the light board and started to point out a bunch of big white things in my neck and chest. He kept saying something about Hodgkin's Disease, I of course had NO idea what the hell this Disease is but I knew it wasn't good. As soon as we left the doctors office I was full of questions to my parents. I knew I was going straight to the hospital for more tests but I still had no idea why. The next 48 hours were a blur, they were full of CT Scans, Gallium Scans, X-Rays, Ultra Sounds and Biopsy's. On December 14th, 1998 I found out that I had Cancer. My first thought was "how the hell do I have cancer? It's what old people get, not teenagers".
Trying to explain to a bunch of junior high kids that I had Cancer but that I'm going to be ok was pretty much impossible. They had to pull me out of school due to my immune system and it just seemed like none of my "friends" even cared. It was like they were too scared of getting it, or too scared of me dieing. That alone was devastating. I wanted them to support me so bad, I wanted them to come visit me at the hospital, I wanted them to call and see if I was ok, but they didn't know how to. On December 18th I had my first Chemo Therapy Session. I had no idea what to expect. All I knew is that I would be getting 4 different drugs and that it would take about 8-10 hours to get all the medicine I needed and I'd probably go bald and get sick. Fun stuff huh? Well they weren't lieing at all. I got to the doctors about 7:30am and got my freshly inserted port accessed and the meds pumping. I knew I hated this already. I didn't want to be there. I wanted to be with my friends more than anything....but I couldn't. At this point my attitude sucked, my parents were trying everything they could to make it positive, my doctor was amazing and cute, so were my nurses but something inside of me just hated everything about it. I thought it had ruined my life forever.
About 2 months into the treatment somehow my attitude changed totally. My mom is a high school teacher and all of these "older, cooler" high school kids had totally adopted me as their best friends and were determined to make me happy. I would come home from Chemo and my bedroom would be full of pictures and posters and stuff hanging from my ceiling. I had a full wall that they created that they named "Meg's happy wall". My parents are beyond amazing, my mom had a theory that every day we had to do something to laugh, she didn't care what it was but we had to! I think still to this day my mom can recite lines from the movie "Dumb and Dumber", for some reason that movie made me laugh so she'd sit and watch it with me over and over.
I walked into my doctors office one day for Chemo, I put out my arm out and said "I'm ready" Something kicked in. I was ready to fight this, I knew it was going to be a bitch but I wanted to get over it and live life! I wanted to be a Survivor, I wasn't going to let this win!
After 8 months of Chemo it was time for Radiation. I had heard it was a breeze compared to Chemo so I wasn't too worried. I went through 2 months going every day of Radiation and then it was the moment of truth! It was time for the final scans and check up. It came back clean!!! My doctor had warned me not to get my hopes up in case I needed more treatments but it was GONE! The thought of only having to go to the doctor once a month was a dream come true! I didn't have to puke my guts out for 4 days every other week, my hair could start growing back that I'd lost. Life was good! We celebrated like crazy!
Chemo was over, life was supposed be getting back to normal...but it wasn't. I attempted to go back to school but had a few problems. My immune system had been so damaged by the Chemo I wasn't able to go anywhere without getting everything everyone around me had. Finally that all got worked out and life was supposed to go on. Anyone that has had cancer knows about the emotions you go through. I felt so lucky, but at the same time I was so upset for having to be so sick..... I didn't know how to feel!
Since then I've been lucky enough to only have a few scares and just have my thyroid fail. I look back at everything that happened and it still amazes me and scares me, it makes me proud to be a survivor but makes me ache for those who have lost family members due to this.
Right before my 10 year anniversary of being cancer free I decided it was time to get a tattoo that would forever remind me of the awesome thing it is to be a survivor.
So much has happened in the last two years. One minute i was a "regular" person in law school living life as most people do. Then I was a person with cancer, fighting for my life. Now here I am cancer free and living a completely different life than I ever expected.
I have worked so hard throughout my fight with cancer. Chemo, various types of radiation, more surgeries than I can count, law school, the Bar exam, having a kidney removed, Spirit Jump, Get The Bean....Often people tell me how proud they are and wonder how I was able to accomplish so much. The answer is so simple that sometimes it evades me. I saw my life slipping away, I looked at death and thought it won, I never thought I would see my 30th birthday, graduation or becoming a lawyer.
I fought like hell to beat cancer and then I just couldn't stop fighting. I fought to re-claim my life, to have all those things that once seemed impossible. My fight with cancer hasn't stopped and I doubt it ever will. A fire was ignited in me and each day it grows.
I AM A SURVIVOR! I am a woman who fought cancer and after that I know there is nothing I can't do. The cancer might come back someday but if it does I will be fighting. Each morning I wake up its my day, im alive and ready to take on any challenge that comes my way.
Posted by Meaghan on Friday, May 08, 2009
This is a very Important post! Please read and pass along to everyone you know.
The picture you see above was created by one of our Spirit Jumpers in an effort to lift the spirits of a young child batting terminal cancer. Now she continues to help the fight against cancer by auctioning the painting off and donating ALL proceeds.
I asked the artist to tell you, in her own words, how she came to create this beautiful painting and why she is auctioning it.
Basically, I was doing the spirit jump for Sammie (handmade soap with a dolphin bath toy swimming in it!) and thought it would be nice to send a card to Sammie’s mum too. I decided to paint a nice relaxing sunset scene for her (I paint with beeswax) and I made a print of the painting for her, to put into a card. I thought it would be great to be able to raise some money for charity by auctioning off the original painting!! After some careful thought, I decided to donate the proceeds to the Anthony Pilcher Bone Cancer Trust based here in the UK. I chose that Trust because of the similarity with Sammie’s own battle with bone cancer – Anthony Pilcher was diagnosed at 14 and passed away aged only 15.
The Ebay auction is running for 10 days to bid please click HERE
I am taken aback by the generosity here and I truly hope that everyone considers bidding and forwarding this on to friends and family!
Posted by Meaghan on Thursday, May 07, 2009
Sorry I haven't written a post in a little while, lots of things going on. As many of you know I had my regular 3 month surgery on March 30. That went okay but when I went to get a little checkup before leaving the doctor decided that the next step would be removing the kidney. Thats when I had to make a decision.
As I was driving away from the doctors, eagerly awaiting my plane ride back to Florida the next day, I made a big decision. I am going to have this kidney removed before I do anything else. So plans were made, flights changed and I was on the road to getting my life back.
I posted about the surgery, it went well. The incision was much bigger than I had anticipated but it definitely signifies the battle I have been through. But its over now! No more 3 month surgeries, no more stents, no more cancer. I passed the Bar and my next step is to look for a job and start living life.
Don't worry this does not mean the end of my blog, its just the beginning. Cancer has changed me in so many ways and I still need to explore that. Spirit Jump is taking off and I'm very excited about that. Get The Bean is also lots of work and I enjoy selling coffee & tea with my boyfriend.
I hope everyone is doing well. I am now on twitter and if you are too please follow me and I will follow back. My twitter is @cancerlost @spiritjump and @getthebean ......lol I like to keep busy.
Posted by Meaghan on Sunday, May 03, 2009
BRIAR’S STORY: LIVING LIFE LIT UP!
“Each year over 190,000 women are diagnosed with breast cancer, and the National Cancer Institute reports that 5-10% have a hereditary component!”
Just over six years ago I would have read this information and thought, "how sad for those anonymous far-away people". Who knew that in December 2002 I would be diagnosed with breast cancer? Everything went mercifully but freakishly fast! On December 6 2002, the last night of Chanukah, I showed my doctor a suspicious lump. He bi-opsied it then-and-there feeling it looked suspicious. On Monday December 9, I found out that it was a malignant carcinoma. On Thursday I had a lumpectomy and by the following Monday, I was meeting with my oncologist trying to wrap my brain around this while making significant treatment decisions. I had a case of "Stage 1" ductile invasive carcinoma---breast cancer, which was very aggressive (they say that when you have breast cancer under the age of 50, it is often more aggressive). When I received my diagnosis of cancer I could barely breathe. My mind went to a time, when almost 30 years earlier, my best friend's mother was diagnosed with cancer. She lived for several years before succumbing to her illness, and it was devastating to watch her die bit by bit. I saw myself as my friend's mother. I felt as though I had been handed a death sentence and that a bolt of lightning would flash from the sky in a moment and snatch away my precious life; my life that I was absolutely not ready to give up!
And so I had entered the statistical ranks! While I was in the hospital for my lumpectomy, I was regaled with voluminous bundles of literature from the American Cancer Society and other concerned parties. Among the information was a fact sheet about BRCA. "Hmmm", I thought, "I think I heard about BRCA at a women's health fair a few years ago---and I don't think this is a good thing". It was at that Hadassah Women's Health seminar that I actually was shown how to do a breast self-exam---something I started doing religiously going forward which saved my life! That's how I found my tumor. Among the information on the BRCA Fact Sheet, was a mini questionnaire. It suggested that if you answer "yes" to three or more of the questions you might consider that there is a genetic link to your breast cancer. Do you have a parent, grandparent, or sibling who has had breast OR ovarian cancer? "Well...yes, my maternal grandmother died at a young age of ovarian cancer." Were you under the age of 50 at the time of diagnosis? "Yes, I am 42." Are you of Ashkenazy (Eastern European Jewish) descent? "Yes, I am."
So there I was, a few hours post-lumpectomy, reading this information, and my heart resumes pounding at a new rate of hysteria! Oh my God!! What if I have the crazy mutation that puts me at a 90% risk of having breast cancer in the future and 85% risk of developing ovarian cancer? (The statistics of the gene expressing itself are lower if you have not YET had breast or ovarian cancer---once you have had cancer, you are at higher risk for future occurences of new cancer. Your risk for "recurrence" remains statistically the same as anyone else.) No! This just couldn't be so. I mean, the only person that I knew of in my family's history who had cancer was my mother's mother. I have always been so healthy. I had my children at a young age, and breastfed forever---factors, they say, which lower the risk of having breast cancer! I have always been health conscious about my diet and love fruits and vegetables. No!
So what does anyone in this situation do (besides drink heavily or eat bon-bons?) You go to your family, friends, and physicians and start polling them on their opinions and what they think. Could I have the BRCA mutation? My oncologist, ironically, thought it was highly unlikely and that I shouldn't worry too much about "that". THAT turned out NOT to be good advice! My husband, parents, and gynecologist were of the school that you can't have too much information and it's what you DON'T know that'll kill you. So, my husband and I marched off to the City of Hope and met with a doctor who is a leader in the genetic studies about BRCA! He was warm and caring and spoke to us in terms we could understand and digest. What I came away with was the understanding that if I had this mutation, I would be like a time bomb waiting to go off. If I had the mutation and removed my ovaries, I would have almost 0% chance of having ovarian cancer in the future and it would reduce my chances of having breast cancer to a wopping 60%. I could DEFINITELY LIVE with early menopause! If I also removed my breast tissue, I would reduce my risk of having breast cancer in the future to almost 0%. This was harder to get my mind around, but I WOULD definitely live without my breasts if I could live my life out fully and not have cancer again! I knew I would have to do the blood test, and that if I was positive for the BRCA mutation, I would have a challenging road to walk, but it could give me a chance at living out my full life span. I knew that if I was BRCA positive, I would elect to have a double mastectomy and ooferectomy.
I chose to do the blood test at my gynecologist's office. I paid for the test with cash under an assumed name so that my health insurance would not be in the loop and wouldn't penalize me if I was positive for BRCA. Within a week of my lumpectomy, and before even starting chemo I went in for the blood draw. December 2002 was a LONG month. By New Year's Eve I had built up a healthy veneer of denial, and was still a few weeks away from starting chemotherapy. Life almost seemed normal and my husband and I planned a romantic evening out. At the lovely restaurant, over champagne and hors d'oeuvres, I noticed my husband was a little quiet and out of sorts. As I asked him what was bothering him, a chill ran through my body. I knew. I was positive for BRCA1. I didn't know if I would faint, vomit, or die on the spot. I did none of these. Remarkably I survived!
We broke the news to our parents. Now there was a bigger question at hand. Where did the mutation come from and what was the risk now to my three children, and what were the implications for my sisters, cousins, etc. I assumed that the mutation came from my mother and, in shock, she stepped up and got tested. She survived the two-week wait to find out that she too was positive for the BRCA mutation but not BRCA1, rather her mutation was BRCA2. Now our family was reeling from the shock that the mutation had lain embedded in my family's genetic coding on both sides. Immediately my father, his brothers, and my sisters got tested. I received the BRCA1 from Dad. My middle sister tested positive for BRCA1 & 2, gifts she inherited from both my parents, and my baby sister was negative, having no mutation.
We got word out to our family near and far. We had cousins reaching out to cousins out to cousins. We started hearing stories of how breast cancer had stricken other branches of our family. I had a distant cousin contact me and thank me for the information. She too found that she was positive for the BRCA mutation, but not from the side of the family that made us related, but from HER other side!
I started chemotherapy in February 2003 and finished in May. Those first few weeks, prior to starting my chemotherapy, were so lonely and frightening. I tried to find information on my own about breast cancer and BRCA mutations by looking through the internet at very late hours of the night, but it seemed that time on the web only plummeted me into deeper and darker despair. I would find all sorts of studies and articles about the likelihood that I would die. I soon realized that I had to back off of the internet and rely on my husband, family, friends, and community to keep my spirits up. I resolved that I would keep my eyes on the present and really appreciate every relationship and every breath I had. Sometimes this worked, sometimes not.
I made it to and through chemotherapy. Chemo was very aggressive for me, and I was very sick for several days after my treatments, and then, just as I was actually feeling “back to normal”....boom....another sickening blast. The hardest part of the chemo and the surgeries that would come, was supporting and processing with my children. My beautiful smart sparkly girl was 13, and my sweet brilliant boys were 11 and 5! My middle boy had the hardest time, and it was when he saw that I was well, 2 years later, that he really expressed how tough and painful the whole thing had been for him and needed some tender---and not-so-tender--- love and care by way of an amazing therapeutic boarding shcool!!! What do you tell children? How do you tell children? And how do you live day to day beyond the descriptions into the reality? One of the best moments we had was explaining how my hair would fall out. My wonderful husband and I explained that just like sometimes anti-biotics give you a tummy ache, the medicine I would be taking would make my hair fall out, but with both, the side-effects were signs that the strong medicines were working. We decided that before the medicine made my hair fall out, we would take matters into our own hands and have a head-shaving ceremony. My daughter was the interviewer, my husband was the shaver and one son took photos while the other videotaped. Over the course of all my treatments and surgeries we became very creative and adept at making lemonade from the lemons---until there just were no more lemons! There was also a lot of hugging, kissing, and lots of snuggling and open conversations.
I read many books of encouragement and support about cancer over this period. I met another mother my age in my pre-kindergarten-age son's class who was also undergoing treatment for cancer, who became my friend and we went to weekly groups at The Wellness Center. There were times I was scared, but I found support and community. My children's schools rallied around me and my family, as did the community at my synagogue. People organized schedules to bring us food, sit with me while I had my treatments, watch my children and even take them for the weekend when I was having chemo. I came to realize how previously, before cancer, I rarely let anyone take care of me. I rarely gave myself time and space for rest and relaxation. I noticed that there were some "perverse benefits" to this "cancer thing", and that I was learning some important life lessons! I was learning to smell flowers and watch clouds float, ever-shifting in the sky. I was appreciating every small moment! I was noticing how loved I was and how much I loved. I learned to look at my children and know that if I died, they would be okay and would always have me in their hearts. I became able to stare death in the face and know that one day death would win---one day, but not yet.
One month after completing chemotherapy I had my ovaries out; a simple procedure done on an outpatient basis. That night I was cooking dinner. A month later I had my double mastectomy and began breast reconstruction, a process that stretched out over a year and a half. During this time, my mother who had had an ooferectomy fifteen years earlier, decided to have her double mastectomy and breast reconstruction. My sister had her ovaries out and was uncertain about the mastectomy. After a year she found what she thought was a benign lump on her breast and decided it was a sign that she should go ahead with her prophylactic bilateral mastectomy. Unfortunately, pathology indicated that her benign lump was not benign after all, and she too, having cancer, had to undergo chemotherapy---three rounds---and all the worry and fatigue and general yuck of cancer!
I have learned that my daughter does not have the BRCA mutation. I must wait a little longer to find out if my boys have it or not. We do not know yet if my sister’s children have it. The BRCA genetic mutation is insidious. It is carried by both men and women. It may or may not express itself---Women affected by BRCA have a higher incidence of breast and ovarian cancer, and possibly colon cancer. Men with BRCA have a heightened incidence of breast and testicular cancer, and may also have a heightened incidence of colon cancer. BRCA is also found to be more prevalent amongst Jews of eastern European descent, although is also found in Scandinavian, Asian, and African American populations. The expression of this mutation may skip a generation or may show up as cancer at a very young age. It has little predictability and certainly no sense of fairness----I guess that's true of all cancer: not predictable and not fair!
It seems that once upon a time ago, Tay Sachs was unheard of---and now all Jewish parents-to-be are tested and they are able to make informed choices about becoming parents. I hope that as we become more educated and aware of BRCA and other genetic connections to cancer, as a community, it will likewise become a practice in the not-distant-future, that testing becomes the standard of care, like Tay-Sachs. We may not be able to counter the effects of this mutation...YET....but to have the information is to have power. Knowing whether or not you have the BRCA mutation, or any other genetic anomaly allows for choice and clarity.
In my family, because I chose to be aggressive about gathering as much information as I could, I was able to have a huge impact. Having been diagnosed with BRCA1 I chose to have surgeries which have allowed me to live my life fully and without stress. I have been able to contact so many branches in my family tree and alert people to the quiet threat that could be waiting to claim our lives. I have heard back from family members who have tested negative and others who have tested positive---all who have been grateful.
I wish I could stand on a mountain top and scream out to the world, "check yourself", "know your body", "be informed and be bold"! There are so many areas in life where we get little say. We don't get to know when the next big earthquake or tornado will come, we don't get to know if today we will be the victim of a crime, or if the next time we fly if that plane will be air safe. However, we do get to be aware, conscientious, and proactive. We can set an example for others that can make a positive difference for generations to come!
Six years have passed and my life has been forever altered. I have lovely perky breasts and no cancer and a passion for wellness and speaking out about what I have learned and making a difference for others. I am loud and proud! I often get phone calls from women who are just entering this scary and trying journey, and it is my privilege to let them know that life goes on, and they will prevail on their path. We all know that there are no assurances in life, and there's no way to know when and where our time to die will come, and until it is that time, what I have learned is that we have NOW. I was so afraid of the unknown and the images I had of having my body mutilated from the mastectomy, of being ruined sexually, of being so disgusting my husband would leave me, of doing it all only to have my life claimed by cancer. I now know that fear is the greatest cancer. I have had three friends die since I was diagnosed with cancer, and I know that there, but for the grace of God go I. However, I have had luck and good grace on my side, and my passion is for life and living life lit up--- My husband adores me and is always by my side. I no longer look at cancer statistics as I did a few years ago. I am not happy that I have this BRCA mutation, but I am happy if my story can make a difference for others and save even one life. I am fulfilled knowing that perhaps others will be motivated and inspired to explore the etiology of their cancer and be fact gatherers and proactive participants in their treatment. I know that I am able to participate in my children's lives, enjoy my husband, celebrate life's special moments, and delight in my health and wellbeing because I chose to pursue the unlikely and the unthinkable and take radical, decisive, life extending action---Life is great and there’s no time to waste a moment of it. I live...surviving cancer whole!
Briar Grossman, L.C.S.W.
Psychotherapist and Life Coach
Co-Founder of www.survivingcancerwhole.com
For more information about cancer, my story, to share your story, and/or to create personal groups to support you on your journey, please see my website.
Surviving Cancer Whole is a website where Chicken Soup For The Soul meets Facebook!