Guest Blogger – Michelle Lykokapis

Guest blogger Healing_Art_Balance_s– Michelle Lykokapis 

I was a normal six year old girl enjoying a carefree life, laughing with my friends, and starting my second year at primary school. I was Daddy’s little princess and my life literally changed overnight. My childhood was ripped away from me and the harsh reality of Dad’s death stole my innocence. It all seemed to happen so fast — my tiny little head did not have time to take in the reality of it all. Having been diagnosed in December of 1977 with a secondary bowel cancer, my Dad died four months later at the age of 36 in April 1978. After my Dad’s death, I was thrown into a world of grief; I no longer had my Dad to comfort and to hug me. I no longer had my Dad to read me bedtime stories, to tuck me into bed at night, to praise me after my ballet concerts, or to hold my little hand when we went for a walk. Unbeknownst to me at the time, my Dad had Lynch syndrome.

Experiencing the death of a parent at a young age is certainly a character building experience and can be the catalyst for a young girl to develop “daddy issues”. These daddy issues manifested themselves in the form of  manipulation and promiscuous behaviors during my teenage years. I sought father figures in all my male relationships throughout my twenties, which only led to broken partnerships and a failed marriage. Independence was my armor and I gave power to the masculine side of myself and not necessarily in a healthy or productive way. I consciously quelled the very essence of my feminine side down. I feared I was weak, could easily be hurt, and was vulnerable — I was a survivor who needed to be in control.

My second marriage came with its own set of challenges. Despite our backgrounds and former spouses, our union seemed strong but after ten years of financial pressure, challenging teenage stepchildren and two babies of our own I had started seeking a way out. I began with riding my bike taking every opportunity to escape. I had commenced self-development class once a week in the hope of rediscovering myself, picked up a part-time job, which got me out of the house mainly at nights and on weekends because blended family time was finally taking its toll. I just couldn’t do it anymore. It broke my heart to be despised in my own home every fortnight; I was at a complete loss. The environment around me was becoming so toxic and I didn’t know how to fix it. If I really wanted to self sabotage my life the Universe was about to give me a permanent way out if I chose to accept it.

You know when you just know certain things? Well, my intuition knew that I had cancer even before the doctor’s appointment. My husband and I went up to the mountains and sat quietly in a little tea house. We held hands, cried and made a promise to each other that no matter what the diagnosis we would get through it together. We walked to a small gift shop and I was drawn to purchase a beautiful aquamarine pendant. I didn’t know at the time but the benefit of using this crystal is that it aids you to let go of emotional issues from your past that you have been holding on to. When I paid for the pendant we started talking to the owner of the shop, she just happened to ask what my star sign was. When the word “Cancer” fell out of my mouth I just knew the heaviness in my heart was a fear I wasn’t sure I was strong enough to face. It wasn’t just my star sign, that same afternoon my doctor confirmed I had stomach cancer.

During treatment and surgery something beautiful happened. That little girl that lost her Father resurfaced. She finally had an opportunity to grieve the loss of her Dad. She looked into her own children’s eyes at night and felt the heartache her Dad must have felt, knowing he was not going to see her grow up. She had time to sit on the floor and play with her boys. She had to hand all the masculine stuff over to her husband from the running of the house to the organising of everyone’s life. She only had one job – to get her adult self well so she could love and guide her little boys into men. The cancer diagnosis exposed the my feminine side that had been so carefully hidden high in my subconscious for so long, had finally re-emerged, and spilled back over into my life.


I took my power back, faced my own mortality, beat the statistics, and chose to live a life of self awareness. My feminine side was not to be feared. She is kind, nurturing, creative, healing, and most of all incredibly powerful. Allowing the creative side of myself to explore my emotions through art was my modality for healing during my illness. Painting was my passion prior to my illness but the work I was starting to produce began surprising me.

Yes, I have Lynch syndrome, but it does not take over every thought of every minute of my life. I am not my genes and I am most certainly not the cancer. I have used the experience to empower my life and to make a difference. I count, I am a survivor but I am also a creator, a healer, a mother and a wife. I am grateful for the knowledge of my genetics because I can now be a proactive, happier person who doesn’t sit in drama or sweat the small stuff. My perspective and ability to bring hope and healing to others through my experience and my artwork has changed my life. The cancer and the Lynch syndrome diagnosis have opened my eyes, saved my marriage and awakened me to possibilities far beyond anything I could have ever imagined.


Michelle Lykokapis

Melbourne, Australia


Clinical Trial at MD Anderson For Lynch syndrome


Clinical Trial at MD Anderson For Lynch syndrome

The Molecular Predisposition to Hereditary Nonpolyposis Colon Cancer (HNPCC)

This study is currently recruiting participants.
Verified February 2015 by M.D. Anderson Cancer Center
M.D. Anderson Cancer Center Identifier:
First received: October 4, 2011
Last updated: February 16, 2015
Last verified: February 2015

The goal of this study is to understand factors which may influence risk for colorectal and other cancers in families. These factors include genetic variability, in combination with diet and lifestyle. In order to achieve these goals, we need to contact as many eligible participants as possible.

Condition Intervention
Bladder Cancer
Colorectal Cancer
Endometrial Cancer
Kidney Cancer
Skin Cancer
Uterus Cancer
Behavioral: Health and Diet Questionnaire


Study Type: Observational
Study Design: Observational Model: Family-Based
Time Perspective: Prospective
Official Title: The Molecular Predisposition to Hereditary Nonpolyposis Colon Cancer (HNPCC)
Further study details as provided by M.D. Anderson Cancer Center:
Primary Outcome Measures:

  • Time to Onset for Colorectal Cancer [ Time Frame: Overall study period up to 15 years. ] [ Designated as safety issue: No ]
    Primary endpoint is time to onset for colorectal cancer using Cox proportional hazard regression for determining the role that polymorphic variants of genes have on risk for development of HNPCC at an early age.

Biospecimen Retention:   Samples With DNA

Participants will have a single sample (8-10 teaspoons) of blood collected at M. D. Anderson, depending upon current health status. In the case of individuals not coming to the clinic, a blood drawing kit will be sent to the participant’s home, which will include instructions and a postage-paid return express mail envelope. If participant unable or unwilling to give a blood sample, saliva samples can be collected instead.

Estimated Enrollment: 2000
Study Start Date: September 1994
Estimated Primary Completion Date: September 2016 (Final data collection date for primary outcome measure)
Groups/Cohorts  Assigned Interventions
Gene Mutation

Group with increased risk for developing colorectal and/or other cancers as the result of an inherited gene mutation, family history of cancer, or an early age of cancer onset.
Behavioral: Health and Diet Questionnaire

Mailed questionnaires asking about foods eaten, cooking methods as well as overall health, and vitamin/medication use, taking several hours to complete.
Other Name: Survey
No Cancer History

Group with little/no personal or family history of cancer.
Behavioral: Health and Diet Questionnaire

Mailed questionnaires asking about foods eaten, cooking methods as well as overall health, and vitamin/medication use, taking several hours to complete.
Other Name: Survey

Spouses of those who may have an increased risk for developing colorectal and/or other cancers as the result of an inherited gene mutation, family history of cancer, or an early age of cancer onset, or little/no personal or family history of cancer.
Behavioral: Health and Diet Questionnaire

Mailed questionnaires asking about foods eaten, cooking methods as well as overall health, and vitamin/medication use, taking several hours to complete.
Other Name: Survey
Detailed Description:

If you agree to take part in this study, you will have a single sample (8-10 teaspoons) of blood collected, depending upon current health status. The blood will be drawn at MD Anderson. If you cannot come to the clinic, a blood drawing kit will be sent to the your home, which will include instructions and a postage-paid return express mail envelope. Phlebotomy charges connected to this study will be paid by the study. The blood sample will be sent to a research laboratory at MD Anderson for analyses. If you are unwilling or unable to give a blood sample, you can give a saliva sample instead. In this case, a kit will be mailed to you with instructions for obtaining the saliva sample. A prepaid envelope will be included for its return. Participants who previously participated in Protocol PA11-0567 and provided a blood sample do not need to provide another blood sample. The previously stored blood sample collected by Protocol PA11-0567 may be used.

You will be asked to answer a series of questions. These questions will ask about foods eaten either one year ago or one year before the first diagnosis of cancer. There will also be questions about cooking methods as well as overall health, and vitamin and medication use. Some of the questions are personal, but all answers will be kept strictly private.

The questionnaire will be sent to your home via U.S. or express mail. It may take several hours to complete the survey, but there is no time limit on its completion. There are no right or wrong answers to the questions. A postage-paid return envelope will be provided for the return of the questionnaire.

Solid tumor material and colonoscopy specimens of normal tissue will be collected from participants requiring either colonoscopy or surgery for routine clinical reasons. The tumor fragments will be collected from specimens. Tissue required for a clinical pathology diagnosis will not be used for research purposes.

This is an investigational study. About 2,000 patients and family members will take part in this study. All will be enrolled at MD Anderson.


Ages Eligible for Study: 18 Years and older
Genders Eligible for Study: Both
Accepts Healthy Volunteers: Yes
Sampling Method: Non-Probability Sample
Study Population

Referrals from Departments of GI Oncology, GI Medicine and Nutrition, GI Surgery, GYN Oncology, Cancer Prevention and from the Genetic Counselors at UT MD Anderson Cancer Center, families and spouses.


Inclusion Criteria:

  1. All patients with a new referral for a diagnosis of colorectal cancer (adenocarcinoma) and/or HNPCC-related cancers at the UTMDACC will be considered potentially eligible for this study regardless of prior treatment.
  2. Families maintained at the UTMDACC Hereditary Colon Cancer Registry that have a known germline mutation in a mismatch repair gene or contain two or more first degree relatives diagnosed with CRC and/or any HNPCC-related cancers, one of whom must be less than or equal to 50 years at diagnosis.
  3. First-degree and more distant relatives of individuals diagnosed with CRC and/or any HNPCC-related cancers from either of the groups in 1 and 2 (above).
  4. Any patient diagnosed with CRC and/or any HNPCC-related cancers less than or equal to 45 years of age.
  5. Greater than or equal to age 18 at time of study.
  6. Able to provide informed consent to participate in this study indicating that they are aware of the investigational nature, in keeping with the policies of this hospital.
  7. Non-HNPCC quartets, defined as parents and two offspring who do not carry a mismatch repair gene mutation. These non-HNPCC quartets should have no personal history of cancer, nor cancer in any first degree relatives of the quartet members, nor history of trinucleotide repeat syndromes. Non-HNPCC parents in a quartet should be less than 34 years old at the time the offspring were born.
  8. Lynch Syndrome patients identified and recruited through Protocol PA11-0567 who opt into Optional Procedure B, which consents the patient to participate in this study.

Exclusion Criteria:

  1. Diagnosis of current major psychiatric disorder, per DSM-III-R (or DSM IV).
  2. Age less than 18 years at time of enrollment.

  Contacts and Locations

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies. Please refer to this study by its identifier: NCT01447199

Contact: Patrick Lynch, MD, JD 713-794-5073

United States, Texas
University of Texas MD Anderson Cancer Center Recruiting
Houston, Texas, United States, 77030
Sponsors and Collaborators
M.D. Anderson Cancer Center
Principal Investigator: Patrick Lynch, MD, JD M.D. Anderson Cancer Center


My 10 Truths About Lynch Syndrome: Guest Blogger


samMy 10 Truths About Lynch Syndrome

Sam Rose is a 27 year old cancer survivor from England. 

Nearly five years ago when I was 22, I found out I would have to have my bowel removed due to colon cancer. I had the surgery in August 2010, and in January 2011 I had my ileostomy reversed and an internal pouch created. Then the genetic counselling started, and after a lot of testing it was discovered that I have Lynch syndrome.

That’s the potted summary of my story, though a lot has happened and sometimes I find it hard to deal with. I go through phases of not thinking about any of it and being absolutely fine, and then other times I get scared of having cancer again in the future, or upset about what has happened in the past (like having upsetting memories and flashbacks), or I just start dwelling for no real reason.

But I’ve decided it’s not okay to just let myself feel negative and get into a funk – I need to work at being positive and happier. So here are my ten truths about Lynch syndrome – ten things that I tell myself in order to keep upbeat and give myself a break:

1. I will always remember what’s happened, and that’s okay.

Memories of what has happened in the past are never going to go away, so I need to accept them and deal with them. It’s okay to sometimes be hit by a memory of treatment or diagnosis – it’s normal.

2. Every part of life can be affected by it, and that’s okay, too.

Lynch syndrome can affect every aspect of life, as I was reminded recently when my friends were talking about whether they’d like to have children. For me, having children would mean a having a caesarean, and definitely passing Lynch syndrome down to my kids (as I inherited defective genes from both of my parents). LS affects family life, relationships, work, and even leisure, as it has infiltrated so much of what I write about in my spare time. But this is all to be expected, too.

3. Most people around me don’t experience this.

Most of the people around me haven’t experienced what I have first-hand, so I can’t compare myself to others to determine how I should be feeling or figure out if what I feel is “normal”. Therefore, everything I think and feel is valid.

4. LS has shaped who I am as a person and changed my outlook on life. There is no reversing this.

Lynch syndrome has definitely changed my outlook on life. I feel more grateful for the health of my partner and myself, and I truly appreciate the time we spend together. It has also made me want to have more experiences – there is no “maybe one day” for me now. There are plans, and determination to travel and experience things while I can, because who knows what will happen in the future?

 5. Sometimes I need to work at being happy and coming out of a funk.

If I find myself dwelling on things, I don’t always just come out of it naturally. I need to actively make the decision to be more positive, and do something to distract myself.

 6. I need to be kind to myself, and not put myself down, call myself names or judge myself.

I admit, I haven’t been very nice to myself recently. I’ve been judging myself for still feeling upset when I thought I should have been “over it” by now. But I’ve decided to try to be kinder to myself, to stop judging, and to instead write down one positive thing about myself each day to try to get my confidence back.

7. Some triggers can be avoided.

There are some triggers that make me think about cancer and my experiences, which can be upsetting. There will always be some that I don’t anticipate, but I do my best to stay away from them whenever I can. If I come across a trigger and it isn’t anything that’s helpful or informative, I try to avoid it. (For example, I stopped following some people on Facebook because they frequently posted triggers such as “share this photo if you want cancer to be cured”. Not something I need to see.)

8. Distractions are good.

When I feel bogged down and particularly negative, talking to someone about something else, playing a game or watching my favourite TV show helps a lot.

 9. It’s okay to think about it, but not to wallow.

I have been known to wallow so much that I lose sight of what I was upset with in the first place – I will stop wallowing so deeply that I can’t even remember why or how I got there. I will exercise my control over this.

10. We are not on our own.

It helps to take to the Internet to find similar people to read about or chat to if I’m feeling down (or even if I’m not). Just beware of that wallowing.

I hope that remembering these points and putting them into practice will help me to become more positive and happier in general.

What are your Lynch syndrome truths?


Sam blogs about Lynch syndrome and writes poetry on her website,

You can also get in touch with her on Twitter: @teh_samby.


Lynch Syndrome, Your Time Is Up!


Lynch syndrome, your time is up! Check this out!

Very honored and flattered to be a frequent contributor to Cure Magazine. Gratitude to them for allowing me to give Lynch syndrome a much-needed voice. I will be writing for them on a monthly basis.

Regarding our last #Lschat … it has reached 7.8 million people thus far! And that was only our 2nd Tweet chat!

Please mark your calendars! We will be holding our NEXT #Lschat on Lynch Syndrome Awareness Day on Sunday, March 22nd. Ellen, Amy, and I will be discussing colon cancer and hereditary colon cancer syndromes with an esteemed group of doctors: a gastroenterologist, a gastro oncologist, and a gastro surgeon! Please join us and feel free to ask any questions or discuss any concerns you may have regarding colon cancer and the various issues which surround it. More details to follow. 

Been talking to quite a few depressed Lynch + people lately who really need to get “out of their heads” and should probably be doing things which nourish their beings rather than spending obscene quantities of time on depressing social media platforms which discuss Lynch and its myriad of cancers. Many of the people I speak with are healthy and young — but are mired in uncertainty and fear and feel as though they are walking in the shadow of death. These feelings by the way are completely warranted but there comes a point when you have to try and let go of some of this and start living your life again. You may have Lynch syndrome but Lynch syndrome DOES NOT HAVE YOU. Get out of your head, stay away from the negative social media platforms, negative blogs, eat well, exercise, spend time in nature with your family and friends, read books which feed and soothe your soul, take care of yourself, bathe yourself in positivity, and most of all — illuminate the world with your being! That’s what you’re here for — nothing less.


I try hard to “walk the talk” and have been getting out of my head with loads of reading, writing, creating things, nourishing my creatures and plants, and taking a pottery class. Here’s the first piece I made, it’s supposed to be a lily pad. I have found that I love with working with hands and the feel of the clay and water whilst throwing on the wheel. The process is very grounding, soothing, and mesmerizing; besides, I’m catering to my inner child at the same time because I was never able to take such classes as a kid. I think it’s also important to interact with others of various ages and to be around new people … it’s good for your perspective, your mind, and your overall well-being.


One more thing, I came across this stellar piece about genetic testing and hereditary cancer syndromes from the National Cancer Institute.

I think you will find it highly informative and may want to share it with your family members:

Be kind to yourself — talk to yourself as you would talk to your best friend.

With gratitude,


Every Day is A Good Day – Guest Post

Every Day Is a Good Day — Guest blog post from Elizabeth Wheeler, Lynch+ patient

In November, I became a delicate, individual snowflake with a super power (I always knew I was special!). I had become an X-Man — my mutation was MSH2, one of the five known mutations linked to Lynch syndrome — and my super power? Drinking Miralax by the gallon, a growing hate for Powerade, bravery … and humor.

But my real secret to survival with a potentially deadly genetic mutation? The people who have surrounded me and enveloped me in kindness, love and compassion.

The Thursday that I got the call from my genetic counselor was a devastating day. I closed the blinds to my office, locked the door, turned off the lights, and came unglued. A feeling of utter hopelessness washed over me. I called my parents and siblings. I drove to my husband’s work and told him while he quietly held me as I sobbed into his shoulder, I called several of my close friends, and messaged the one friend living abroad as I knew it was close to 2:00 am her time.

That night, needing a semblance of normalcy, I kept my plans to play games with friends and got in my car ready for an evening of forgetting my day.  What I was met with was a night filled with laughter, maybe a few tears, and my friends showing me the bravery I couldn’t find for myself. Oh, and cake. Did I mention the cake? My friends, unbeknownst to me, had ordered me a hilarious cake:


I was floored. I laughed so hard I cried. I was completely surprised. I was taken care of, I was loved…I am loved. The day that had started as an absolutely soul crushingly hopeless day had ended in a way that I will continue to choose to live my life: with joy. What I’m trying to say, is that sometimes, with a Lynch diagnosis, it becomes easy to isolate and be alone and feel alone, but we are only ever as alone as we allow ourselves to be.

Being different will never be easy, but, like my mom says, “Every day is a good day, now go live your life!”


If you would like to reach out to Liz, please email her at!



 I’m always looking for guest blog posts. If you’re interested in sharing your story or writing something relevant to a hereditary cancer syndrome, please contact me at

Thanks. – g 

#Lschat — The Emotional Implications of Hereditary Cancers

Thus far, we have managed to reach over 7.4 million people with our recent #Lschat. Please find the Storify from our #Lschat below:



Much gratitude to Amy L. for putting this together for us.





Much gratitude to Amy Byer Shainman (@BRCAresponder) and Ellen Matloff of MyGeneCounsel (@MyGeneCounsel) for helping me moderate the #Lschat. If you’re interested in seeing the transcripts and analytics, please go here:

We reached almost 7 MILLION people with our chat!

I’m deeply honored and grateful for everyone who participated in helping us get the word out about the emotional implications of having a hereditary cancer syndrome. I will keep you posted on the next #Lschat.



#Lschat: The Emotional Implications of Having a Hereditary Cancer Syndrome


I am hosting an #Lschat this Sunday discussing the emotional implications of having a hereditary cancer syndrome on Twitter. I would greatly appreciate your participation in the chat and sharing this post. We are anticipating a large, international audience. Amy Byer Shainman (@BRCAresponder) and Ellen Matloff (@MyGeneCounsel, genetic counselor extraordinaire!) will be moderating the chat with me.

I am very honored and flattered they have both agreed to assist with this chat — my last chat to date has reached over 2.5 million people on Twitter!  Please help me spread the word.

Much gratitude in advance.




Word cloud illustration in shape of hand print showing protest.

Today, February 4, 2015 is #WorldCancerDay 

Lynch syndrome is hereditary cancer syndrome which is responsible for over a dozen cancers; especially early onset cancers of the colon and rectum. Lynch syndrome also increases the risk of cancer to the: stomach, intestine, liver, pancreas, gallbladder ducts, upper urinary tract, brain, skin, and if you are male, the prostate.

Women with Lynch syndrome are also at risk of developing cancer of the endometrium, ovaries, and breasts.                                              FB_IHLS_profile_300x300-1-2-2

Please talk to your doctor or seek out a genetic counselor if your medical family history concerns you.

It may save your life and the lives of many others within your family.

Please go to for more information.

Be Strong …


Be strong …

Happy Monday to all of you! Chicago was blanketed in almost 20″ of snow this weekend so everything is pretty much shut down until the City cleans this glistening white mess up. Lots going on in the Lynch syndrome advocacy front — I was recently interviewed for a podcast and wrote a piece for an international medical journal, I will let you know when those both come out but in the meantime we’re having our 2nd #Lschat this Sunday at 12pm CST!  Genetic counselor extraordinaire — Ellen Matloff — and the CEO of My Gene Counsel, along with Amy Byer Shainman (a.k.a. @BRCAresponder on Twitter) will both be moderating the chat with me and we will be discussing the emotional implications of having Lynch syndrome, BRCA, and various other hereditary cancer syndromes. We are anticipating a large, international audience since it will be held on Sunday. I hope you can join us!

FYI: I recently discovered that I do not have to change to .org so that won’t be happening but some new modifications will be made to the site within the next month.

Been receiving lots of calls and emails from many Lynch+ people for info regarding how to stay strong, healthy, and cancer free. My best advice to you is stop eating crap and lose weight. I see some of the things on Facebook that my Lynch+ friends are eating … let’s just say some of it makes my eyes want to bleed — sorry, Lynch peeps, we cannot eat crap; processed foods, red meat, fried foods, etc. … Lynch or no Lynch, if you eat poorly and are overweight, you will probably get cancer. I’m not interested in blaming the victim here but we need to take some responsibility, especially when we know that some cancers can be prevented with diet, exercise and frequent colonoscopies — like colon cancer.

Dr. Weil has a great page on his site about Lynch syndrome:

In regards to colon polyp prevention he states:

“Nutrition and supplements for colon polyps:

  • Eat very little, if any, red meat. Regular consumption of red meat results in an increased risk of developing colon cancer compared to eating no red meat at all.
  • Eat generous amounts of vegetables. Green leafy vegetables, especially, have been linked to lower risk of colon cancer.
  • Eat plenty of fiber from a variety of foods (from beans to whole grains to fruit). Although recent studies about which specific foods provide the most benefit have not been conclusive – especially when it comes to primary prevention of colon cancer – most physicians, researchers and nutritionists recommend a largely plant-based diet with lots of fiber.
  • Limit alcohol. Studies suggest that the more alcohol you drink, the higher your risk of developing colon cancer.
  • Make green tea your beverage of choice. Green tea consumption is linked with lower incidence of many kinds of cancer.
  • Consider taking aspirin therapy. Research suggests that taking a daily low-dose aspirin over a period of years can cut colon cancer risk by as much as half.
  • Take a multivitamin containing folic acid and vitamin D. (*G’s comment — the best source of vitamin D is from the sun, just don’t overdo it.)
  • Keep blood sugar and insulin levels low. Insulin resistance, especially when linked to excessive abdominal body fat, is associated with an increased risk of colon cancer.
  • Eat small, balanced meals frequently and watch your intake of carbohydrates (sugars and starches), especially those with a high glycemic index.

How can colon polyps be prevented?

Doctors do not know of any one sure way to prevent polyps. But you might be able to lower your risk of getting them if you:

  • eat more fruits and vegetables and less fatty food
  • do not smoke
  • avoid alcohol
  • exercise every day
  • lose weight if you are overweight.

Eating more calcium and folate can also lower your risk of getting polyps. Some foods that are rich in calcium are milk, cheese, and broccoli. Some foods that are rich in folate are chickpeaskidney beans, and spinach.” 

I behave and do the above about 95% of the time — I am not perfect by any means and love to have some wine (you do have to live a little) but I eat tons of vegetables, mostly in their raw state and drink lots of beet juice, orange and carrot juice, and green apple, kale, celery, and spinach juice, and believe in drinking loads of turmeric, green, and white teas throughout the day — all of which have broad anti-inflammatory and anti-cancer effects. I definitely make exercise a daily priority. I bought myself a Fitbit for Christmas and it has definitely made me more conscious of my daily exercise level. I try and log over 10,000 steps a day, with walking and running, which is the equivalent of about five miles; however, if you’re trying to lose weight, cardio is simply not enough, you must incorporate weight-lifting into your workout. I love the kettlebell and do all kinds of fun exercises with it. Lifting weights is exceptionally important, especially for those of us women who no longer have our repro organs. Lifting weights is great for our bones, makes you strong, and reduces our chances of developing osteoporosis. It also helps you lose weight faster as muscle burns more fat, and if you’re lifting properly, it will improve your posture.

This is what a kettlebell looks like:


More importantly, I try to relax and surround myself with candles, books and beautiful, positive things and people. I meditate myself to sleep every single night and recite mantras whilst saying prayers for my myself and those I love. This is how I soothe myself. Some days are more difficult than others but I have noticed with the passage of time that things have improved in regards to accepting my Lynch diagnosis. I suppose all the positive things I do helps me feel somewhat in control and knowing I’m vigilant with annual screenings helps me, too. I also think putting my energy into advocacy and helping others has in turn helped me, too.

Then again, some days can be very challenging; I hear some of the heart-wrenching stories people tell me or I discover things about cancer treatments which horrify me. Even though I am mired in the Lynch waters by choice, I still need to police my behavior and stay away from the social media platforms, which discuss Lynch syndrome, related cancers 24/7. Those places only add to the darkness to deal with, no need to take on the darkness of others.

The one thing that bothers me but I try to stay strong and have a sense of humor about is the little aches and pains I experience from stress or simply age. I cannot simply have a headache without thinking, “Oh great, that must be a brain tumor growing!” or have an upset stomach without thinking the absolute worst. Or my son cannot have an issue of any sort of issue without me freaking out and going into orbit — he has yet to be genetically tested for Lynch syndrome. This is a pretty common thing in the Lynch community. We are constantly on high alert in regards to aches and pains — they initially are not thought of just little benign, daily issues — many of us automatically assume the worst. A Lynch diagnosis is not easy to deal with — especially for those of you who have been recently diagnosed. It will take time for you to come to terms with the diagnosis but the more you become your greatest advocate, take responsibility for your health, and get the best medical care you can afford, I think that you eventually will find a better place.

I hope you’re all well and hope to see you all participating on our Twitter chat this Sunday. The discussion will be very interesting and enlightening for many people.

In the meantime be strong and remember this:





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