It’s hard to put into words what was going through my mind on this day, five years ago. A million things and somehow at the same time complete silence and darkness. I recall almost watching myself going through the motions, nodding, signing paperwork, and putting on a brave front.
Before I could catch up with what was happening, my sister Diem was moved into a different room as we were told she’d be comfortable through the holidays, and that she may even come home. We shouldn’t discuss what the doctors were telling us with her. Remain positive. I blinked, and five days later I held her hand as she took her very last breath. For weeks and months after, my body pulled towards the hospital. I couldn’t and wouldn’t believe that she wasn’t there. To this day I don’t know if we’re programmed to ever fully accept the permanence of loss.
Since Diem’s passing other people in my life have lost loved ones; mothers, fathers, spouses and friends. Every time this news hits my ears I go back to day one with them. I struggle to reach out and say the right things because the reality of their journey is just too painful to deliver. Grief is the loneliest place on earth and no matter how many people surround you in your life that void just can’t be filled. Period. You live a new normal now.
Diem Brown was fearless, in every sense of the word. Nothing seemed to scare her, even her cancer diagnosis. Diem would perform a full dance routine to the radio driving whileMegan Brown Clarke, her sister and MedGift co-founder would be slumped down next to her bright red with embarrassment.
She dreamt of a place where people going through a difficult time could find peace, resources, and overall support. We are proud of where MedGift is today, five years without her guidance but every day with her passion still pushing its mission forward.
Nina Martinez is a remarkable person with a remarkable story. Nina has been living with HIV for 35 years and this past March donated a kidney to another HIV positive person. She couldn’t donate blood but she could donate a kidney, that’s giving. Check out her story here and if you can please visit her MedGift support page: Sharing (a kidney) is caring!
In case you didn’t know, November is National Diabetes Month and it’s almost over but before it the MedGift team has a question? Did you know this year’s focus has been promoting health after gestational diabetes (GD). Pregnant women with no history of diabetes but who experience high blood sugar levels during their pregnancy are said to have GD. Studies indicate approximately 2%-5% of pregnant women from the general population experience GD and the occurrence almost doubles with the risk factors shown in the table to the right. Furthermore, women who develop GD have a 50% chance of developing type 2 diabetes.
Symptons of GD include: feeling thirsty even when you haven’t done anything, feeling fatigued especially early in the day and a dry mouth.
Because these symptons can be subtle all pregnant women are screened for GD during the 24th and 28th week of their pregnancy. The screening test measures blood glucose levels.
If left uncontrolled, the condition may be harmful — or even deadly — to both the woman and her child, and can increase both of their risks of developing type 2 diabetes later in life.
Anniversaries are a funny thing, we have these dates on the calendar that mean more to us than other dates. We take pause, let ourselves either celebrate; honor an event in history or mourn a moment that changed everything. We allow ourselves these specific dates even though yesterday and tomorrow are in reality no different.
11/14 is one of those dates for me. Even though there’s not a day that passes that I don’t think about my sister, it’s this date the past four years I let myself really go there. Go back to her, our memories, her journey and that day specifically.
This year for the first time I let myself watch her memorial, I hear her voice, her laugh. I read her eulogy. Took hours to get through both, alone. As I was watching and reading I kept wanting to stop, why let myself hit that nerve, how did I ever get up again after this day four years ago or any days that followed?
As I reflect I always go back I think about Diem’s overall “legacy,” and to the fear that people could be forgetting, that her life was lost in vain. And then I come back to MedGift. Are we doing everything we can to share her story, her mission? That will be her real legacy. Knowing lives were helped, touched, changed because of her vision.
What I often struggle with is how I remember viewing cancer before it touched my life. I was one of the millions that believed it “it will never happen to me, or my loved ones.” Faceless victims I couldn’t identify with. Cancer was a million miles away from my life. Until one day it wasn’t.
I believe we have become desensitized to this disease because of how rampant it’s become, from the diagnosis, to treatments and to the number of lives lost. We need to reenergize our focus and our efforts as a society to combat it and be there for those fighting it, every single day.
I’ve racked my brain for a way to reach those who see Cancer today the way I saw it years ago. The need to make cancer a person; an amazing, living, breathing, smiling, dancing person – how to reach those that have been lucky enough to still believe it’s a million miles away.
I’m sharing Diem’s memorial video, and her eulogy to make cancer human again and Diem’s memory and legacy fresh for anyone that’s willing to go there with us.
It’s my hope that Wednesday, November 14th’s Collaboration Hub Kick Off Event (Powered by WeWork & The Biden Cancer Initiative) on the anniversary of Diem’s passing will do just that. Put more faces and voices to this disease, to create an opportunity for us to meet one another by coming together to fight cancer and understand the resources we can all share with those who need them most.
I needed to get words on paper so I set out around the city to all the places you loved, Central Park, the Plaza for tea, our apartment but I couldn’t find you anywhere. It was the first time I had been alone in days and I was hoping you would somehow speak to me, you would somehow let me know it’s all going to be okay and that you’re in a better place, pain free.
Diem and I were 18 months apart. We were raised as twins. The Girls. Go check on the Girls, the Girls need a bath, the Girls are in time out. Identical toys, identical outfits but completely different personalities. My mom said Diem came out fighting from day one. Always full of energy, hands in everything, curious and brave. They had a joke about when we would travel that Diem was on a tour of the world’s hospitals. No matter what country we were in she found herself with a broken bone, missing tooth, or needing stitches. It was her go go go attitude. She was fearless, mischievous and incredibly clever. Since we moved around a lot we were often each other’s only companions and in turn only tormentors. Diem and I shared the same bed when we were toddlers. Diem had a bed wetting problem but because of her quick thinking at age 5, I was the one in diapers. Diem had figured out at that age if she just switched spots and undergarments with me no one would ever be the wiser. It took my parents catching her mid act for the truth to come out. From then on we enjoyed separate beds. A few years later I was in Girl Scouts and I had my heart set on the top prize for selling the most cookies, it was a Caboodle. Id given up, complaining there was no way I would sell enough to win. Diem, at age 8, rolled her eyes at me, grabbed my cookie form, a phone book and filled in the entire sheet. I was soon awarded the top seller for the entire East Coast. We were psyched until about 900 boxes of unclaimed cookies were delivered to our house. We were grounded and needless to say I had to return the Caboodle.
I have hundreds of memories and stories however most I don’t feel right sharing because obviously as sisters we’d always have our own version of how the story actually went. Im not sure whose going to correct me when I tell the biting story without you here to chime in that you were just laughing… really really hard. What empties me are not the memories I can recall so vividly it’s the memories that were to come. Ive always just pictured you by my side for all our life events. You’re at the alter with me on my wedding day, you’re beaming from ear to ear when I hand you your new niece or nephew. We take turns hosting family holidays, we plan girls getaways, wine weekends, concerts and Brown-Bowl tailgates. We grow old together.
The body, mind and heart are all amazing things. I truly can’t believe my body is capable of producing so many tears, I can’t seem to get my mind to stop racing/linking every sight, smell and sound to you and I can’t get my heart to stop aching. It actually hurts. Today I am able to understand that this is the very essence and beauty of life and Gods resilience in us. My armor will eventually crack because in order to truly honor my sister I have to learn to live like she lived and that was day by day and to the fullest. She saw the good in everyone. She loved hard, laughed hard and danced hard. I will and challenge you to aspire to live as she lived. Life is too short.
Family surrounded Diem in her last moments, I held her hand and put the other on her head. Father Morris led the Hail Mary and I closed my eyes tight. I saw Mom waiting for you with arms stretched open “come home darling” in her sweet Aussie accent. You ran to her. When I opened my eyes you took your last breath and you were at peace. That is what we hold onto now. Cancer did not beat you Diem, it lead you to Eternity. Our dancing angel.
October is Breast Cancer Awareness Month (BCAM). BCAM is an international health campaign to raise awareness of the disease and to raise funds for research into its cause, prevention, diagnosis, treatment and cure. One in eight women will be diagnosed with breast cancer (12%) while one in 38 will will die from the disease (2.6%). Chances are you have a family member or friend who has been diagnosed with breast cancer so you understand the diagnosis is the beginning of an arduous, difficult journey. This blog post highlights two web sites that serve as resources for women undergoing cancer treatment.
“When I was 47, I was diagnosed with breast cancer. In a very short period of time, I became bald, breast-less, and bloated from surgery and chemotherapy. I could barely recognize myself. It was soul destroying.”
Understandably, women experiencing this terrible disease need lots of support and they need different types of support. Aware of these needs firsthand Lisa, and cofounder Ellen Weiss Kander who passed away from liver cancer in 2012, created their web site to to help prepare women for the non-medical, appearance-related side effects of surgery and treatment, and to provide them with easy-access to fashionable recovery products and lifestyle solutions. Check out their sitehttp://www.cancerbeglammed.com/about-cancer-be-glammedfor more information.
A second resource for those undergoing chemotherapy was founded by Heather Brown as a result of breast cancer diagnosis and subsequent chemotherapy treatment. Heather was diagnosed with breast cancer in July 2016. She felt that keeping her hair would be very important to her mental state and thus affecting the outcome of her treatment.
Heather was able to use the DigniCapwhich was cleared by the FDA in 2015, although most insurances currently don’t cover the cost. She kept about 90% of her hair, inspiring her to create the foundation Hope For Hair to help those who otherwise couldn’t afford the cost of the cooling cap technology. If you or someone you know is preparing for chemotherapy and would like to use the DigniCap but need financial support check out Heather’s site at Hope For Hairnow.
And of course, MedGift is there for those needing financial and emotional support or assistance coordinating tasks.
Netflix and the New York Times are currently filming a documentary series about people with undiagnosed medical conditions. The series is inspired by Dr. Lisa Sanders’ Diagnosis’ column in the New York Times and will air on Netflix in 2019. The series producers are looking for new cases to follow and are particularly interested in patients who come from minority communities and/or parts of the country that aren’t often seen on television. They have asked us to reach out to YOU, our MedGift extended family.
If you are undiagnosed or have a personal medical mystery you’d like to share, please email the producers at firstname.lastname@example.org. All information will be treated in confidence and be subject to HIPAA guidelines.
Please don’t submit medical emergencies or conditions that require an immediate response. The goal here is to share individual stories with “the crowd”, to follow your journey as you seek a diagnosis and to potentially make appropriate information available to you. If you are under 18, please have your parent or guardian communicate the request.
Are the high cost of medications impacting your household? According to Consumer reports approximately 30% of those surveyed responded medication costs are resulting in lifestyle changes. The May issue of Consumer Reports has a special report on how to reduce your medication costs. Tips mentioned in this article include:
Always ask about the availability of a generic equivalent.
If like most you have been using the same pharmacy for years, shop around for lower prices, do not assume your pharmacy offers the lowest prices.
Do not be afraid to use reputable on-line, web-based pharmacies.
Check on-line, at your pharmacy and your physician’s office for coupons.
Always ask your pharmacist for the price of a prescription and then ask if this is the lowest price available?