Mark H.

@stop_cancer_advocate | contributor
I'm here to share my wife's tragic story of a hereditary cancer that could have been prevented. And to hopefully save others from suffering the same horrible fate. In June 2021, my wife of 40 years died in my arms from triple-negative metastatic breast cancer. She had courageously fought the cancer caused by a BRCA2 mutation for nearly 4 years. Determined and positive, somehow, she managed to endure every twist this evil disease threw at her before it cruelly robbed her of her life. Heartbreakingly, Her fight against cancer was preventable. Because of current health care laws, there is currently no effective way for germline genetic mutations to be shared for famillies at risk for hereditary cancer. That means it falls to family members affected by BRCA and other mutations to spread the word. Tragically, in my wife’s case, relatives acutely aware of the mutation for many years, failed to provide gene sequencing info or communicate the seriousness of the risk and the urgent need of getting genetically tested to numerous unaware blood relatives before my wife's diagnosis. I'm a retired freelance artist and illustrator who has created hundreds upon hundreds of works of art for books, magazines, greeting cards, websites, and countless other publications over a long career. I had hoped when I retired I would just happily fade into the background and the simple life and just create art for art's sake. But now, in honor of previvor daughter and my beloved late wife and muse, I'm a hereditary cancer awareness and prevention advocate.
Mark H.

How You Can Really Help Cancer Patients' Caregivers

“How can I help?” I lost track of how many times I was asked that question as a cancer patient’s caregiver.  About 99 percent of the time, I didn’t have a good answer either. I usually had my hands full dealing with some crisis, and my mind was often sleep-deprived — especially as my wife’s cancer progressed and my exhaustion and desperation set in. All I know is I wanted someone to just show up and do something. Looking back at my wife’s cancer ordeal, I’m so grateful for the few people who truly did show up. But I was also disappointed by the many “grief tourists” who just stopped by for a visit and left as soon as they could. Cancer caregiving is just indescribably hard at times. Cortisol never stops pulsing through your body as you try desperately to tend to your loved one — all while hoping for a miracle to rescue you and your loved one from this nightmare. If someone were to ask me today how to help a cancer patient and their caregiver, I can only say “Use your imagination.” Imagine a loved one with cancer. Then imagine the nightmare of having to care for someone you dearly love who is seriously ill — and how you might want someone to help you in that situation. And if you can’t think of any nightmare scenarios, I’ll be glad to offer a few — or maybe a dozen or so.  Ones that involve early mornings. The middle of the night. Time spent over the sink. Time spent over the toilet. The car rides home after chemotherapy. The car rides home after whole-brain radiation. The ER. The ER again — for 12 hours. The ER once again — at 2:00 in the morning. The hospital. Rehab. Hospice. And the place no one wants to be: Next to a soulmate’s deathbed. So don’t ask, “How can I help?” And don’t stop by with a potted plant or a vase of flowers with a store-bought “Thinking of you” card and leave it at the front door. Instead, figure out a good time to show up for the caregiver, and figure out what would be helpful. Then do it. Questions can only go so far, but your actions can make a caregiver’s life a little more bearable.

Community Voices

What do you wish was taught in medical school about your condition(s)?

<p>What do you wish was taught in medical school about your condition(s)?</p>
66 people are talking about this
Mark H.

We Need Better Sharing of Family Genetic Tests and Risks Information

As I walked past the bookcase the other day on my way out to the backyard, I glanced over and saw our wedding picture and the urn holding my wife’s ashes next to it. Instantly an enormous wave of grief crashed down upon me that brought me to my knees. “I should not be a widower and solo parent!” I screamed into my hands. My wife was a world-class master educator of elementary school students and a mentor of teachers. She also was my soul mate, muse, creative partner, adventure companion, co-parent, and best friend. We had been nearly inseparable from the moment we met 42 years ago until she died in my arms from triple-negative metastatic breast cancer. The grief of losing her and all that we had done and accomplished in our lives together is nearly unbearable. We had so many grand adventures together. And with so many hopes and dreams we had for our approaching retirement as well as all of our daughter’s future accomplishments and milestones to celebrate, there was so much to look forward to. Now lost to her to a curse called cancer. My wife’s nearly four-year cancer struggle was a nightmare journey through hell for her, for me as her caregiver, and for our daughter. Almost from the moment she found the lump until her last breath, it was one traumatic heartbreaking crisis after another. How truly awful it was is beyond words. But it was all preventable. My wife didn’t have to get cancer. Unfortunately, she was unaware that she had inherited a BRCA2 mutation from her father, which allowed the cancer to develop. Sadly, her father died of metastatic melanoma, a BRCA2-related cancer, years before gene sequencing would have been widely available. But a few years after her father’s death, a male relative developed a rare cancer and this time genetic testing was done. That’s when a germline BRCA2 mutation was confirmed. Tragically, the crucial gene sequencing data, the deadly seriousness of the risk, and the extremely urgent need to get genetically tested was never expressly shared by the relative acutely aware of the family’s mutation. Had my wife known specific details about the mutation possibility, she would have had genetic testing to look for the mutation. Once confirmed, she then would have opted for prophylactic surgery that would have reduced her risk of getting cancer by at least 95%. I do feel that my wife’s cancer struggles and untimely death was the result one relative not having the ability to sit down and explain the cancer risk and urgent need for genetic testing to family members. However, the blame also partly lies in our culture and in healthcare laws. In our culture, openly talking about serious medical issues among friends and family, especially cancer, is uncomfortable to say the least. Even when that information might be life-saving, the need to be medically proactive is poorly communicated, if at all. In addition, current healthcare privacy laws make it difficult for physicians and other medical service providers to share patients’ medical information with others. This puts the burden of sharing life-saving information on the shoulders of often confused and medically illiterate family members. But in the case of hereditary cancer and a genetic mutation, this should never be the case. A germline mutation is not an individual issue. It ceases to be that when it is apparent that other members of the family might carry the mutation and it is potentially life-threatening. This information needs to be effectively shared somehow. Putting numerous family members at risk of a horrible death just to prevent the disclosure of a genetic defect of one individual is ridiculous. To think my daughter and I lost someone so special to a horrible, but preventable cancer because only one person was trusted to comprehend and communicate the serious implications of a short, somewhat vague sentence on a gene sequencing report is excruciatingly painful. Things need to change.

Community Voices

I like to help others by…

<p>I like to help others by…</p>
59 people are talking about this
Mark H.

We Need Better Sharing of Family Genetic Tests and Risks Information

As I walked past the bookcase the other day on my way out to the backyard, I glanced over and saw our wedding picture and the urn holding my wife’s ashes next to it. Instantly an enormous wave of grief crashed down upon me that brought me to my knees. “I should not be a widower and solo parent!” I screamed into my hands. My wife was a world-class master educator of elementary school students and a mentor of teachers. She also was my soul mate, muse, creative partner, adventure companion, co-parent, and best friend. We had been nearly inseparable from the moment we met 42 years ago until she died in my arms from triple-negative metastatic breast cancer. The grief of losing her and all that we had done and accomplished in our lives together is nearly unbearable. We had so many grand adventures together. And with so many hopes and dreams we had for our approaching retirement as well as all of our daughter’s future accomplishments and milestones to celebrate, there was so much to look forward to. Now lost to her to a curse called cancer. My wife’s nearly four-year cancer struggle was a nightmare journey through hell for her, for me as her caregiver, and for our daughter. Almost from the moment she found the lump until her last breath, it was one traumatic heartbreaking crisis after another. How truly awful it was is beyond words. But it was all preventable. My wife didn’t have to get cancer. Unfortunately, she was unaware that she had inherited a BRCA2 mutation from her father, which allowed the cancer to develop. Sadly, her father died of metastatic melanoma, a BRCA2-related cancer, years before gene sequencing would have been widely available. But a few years after her father’s death, a male relative developed a rare cancer and this time genetic testing was done. That’s when a germline BRCA2 mutation was confirmed. Tragically, the crucial gene sequencing data, the deadly seriousness of the risk, and the extremely urgent need to get genetically tested was never expressly shared by the relative acutely aware of the family’s mutation. Had my wife known specific details about the mutation possibility, she would have had genetic testing to look for the mutation. Once confirmed, she then would have opted for prophylactic surgery that would have reduced her risk of getting cancer by at least 95%. I do feel that my wife’s cancer struggles and untimely death was the result one relative not having the ability to sit down and explain the cancer risk and urgent need for genetic testing to family members. However, the blame also partly lies in our culture and in healthcare laws. In our culture, openly talking about serious medical issues among friends and family, especially cancer, is uncomfortable to say the least. Even when that information might be life-saving, the need to be medically proactive is poorly communicated, if at all. In addition, current healthcare privacy laws make it difficult for physicians and other medical service providers to share patients’ medical information with others. This puts the burden of sharing life-saving information on the shoulders of often confused and medically illiterate family members. But in the case of hereditary cancer and a genetic mutation, this should never be the case. A germline mutation is not an individual issue. It ceases to be that when it is apparent that other members of the family might carry the mutation and it is potentially life-threatening. This information needs to be effectively shared somehow. Putting numerous family members at risk of a horrible death just to prevent the disclosure of a genetic defect of one individual is ridiculous. To think my daughter and I lost someone so special to a horrible, but preventable cancer because only one person was trusted to comprehend and communicate the serious implications of a short, somewhat vague sentence on a gene sequencing report is excruciatingly painful. Things need to change.

Mark H.

We Need Better Sharing of Family Genetic Tests and Risks Information

As I walked past the bookcase the other day on my way out to the backyard, I glanced over and saw our wedding picture and the urn holding my wife’s ashes next to it. Instantly an enormous wave of grief crashed down upon me that brought me to my knees. “I should not be a widower and solo parent!” I screamed into my hands. My wife was a world-class master educator of elementary school students and a mentor of teachers. She also was my soul mate, muse, creative partner, adventure companion, co-parent, and best friend. We had been nearly inseparable from the moment we met 42 years ago until she died in my arms from triple-negative metastatic breast cancer. The grief of losing her and all that we had done and accomplished in our lives together is nearly unbearable. We had so many grand adventures together. And with so many hopes and dreams we had for our approaching retirement as well as all of our daughter’s future accomplishments and milestones to celebrate, there was so much to look forward to. Now lost to her to a curse called cancer. My wife’s nearly four-year cancer struggle was a nightmare journey through hell for her, for me as her caregiver, and for our daughter. Almost from the moment she found the lump until her last breath, it was one traumatic heartbreaking crisis after another. How truly awful it was is beyond words. But it was all preventable. My wife didn’t have to get cancer. Unfortunately, she was unaware that she had inherited a BRCA2 mutation from her father, which allowed the cancer to develop. Sadly, her father died of metastatic melanoma, a BRCA2-related cancer, years before gene sequencing would have been widely available. But a few years after her father’s death, a male relative developed a rare cancer and this time genetic testing was done. That’s when a germline BRCA2 mutation was confirmed. Tragically, the crucial gene sequencing data, the deadly seriousness of the risk, and the extremely urgent need to get genetically tested was never expressly shared by the relative acutely aware of the family’s mutation. Had my wife known specific details about the mutation possibility, she would have had genetic testing to look for the mutation. Once confirmed, she then would have opted for prophylactic surgery that would have reduced her risk of getting cancer by at least 95%. I do feel that my wife’s cancer struggles and untimely death was the result one relative not having the ability to sit down and explain the cancer risk and urgent need for genetic testing to family members. However, the blame also partly lies in our culture and in healthcare laws. In our culture, openly talking about serious medical issues among friends and family, especially cancer, is uncomfortable to say the least. Even when that information might be life-saving, the need to be medically proactive is poorly communicated, if at all. In addition, current healthcare privacy laws make it difficult for physicians and other medical service providers to share patients’ medical information with others. This puts the burden of sharing life-saving information on the shoulders of often confused and medically illiterate family members. But in the case of hereditary cancer and a genetic mutation, this should never be the case. A germline mutation is not an individual issue. It ceases to be that when it is apparent that other members of the family might carry the mutation and it is potentially life-threatening. This information needs to be effectively shared somehow. Putting numerous family members at risk of a horrible death just to prevent the disclosure of a genetic defect of one individual is ridiculous. To think my daughter and I lost someone so special to a horrible, but preventable cancer because only one person was trusted to comprehend and communicate the serious implications of a short, somewhat vague sentence on a gene sequencing report is excruciatingly painful. Things need to change.

When Your Friends Experiencing Grief Need the Most Support

“I’m sorry about your grandmother,” my neighbor said as I was walking my dog down the street. It had only been a week since she left us, and I was trapped in the ebb and flow of fresh grief, finding pockets of joy and caverns of despair, anguish, and anger alike. In that moment, I was looking at how green the grass was, and admiring how warm my skin felt in the early spring sun. For one second, I was living in the moment and practicing mindfulness just like all those annoying blogs preach about, only to crash back down to Earth due to five well-meaning words. I was shell-shocked, not sure how to respond. “Thank you,” or some other form of gratitude would have been the proper response, but those words didn’t come to my tongue. “Me too,” is how I wanted to respond, but that made me feel like a jerk. In all honesty, I don’t remember what I said back, but I do remember the way she, along with how everyone else looked at me for the first couple weeks. I remember all the “I’m sorry for your losses,” and favors rang in from friends without me having to ask. It was all very kind and sweet of them, but it was all still too new. It’d remain “new” as my family gathered to celebrate her life, and then into us all going our separate ways after. It’s now over a month later, and the support that was almost as loud as my grief is fairly quiet now. I’m back to work, back to my writing group, and back to real life. And in real life people can’t have you breaking down constantly because of who you lost. Loss is a part of love, and thus a part of life, so yes it’s normal, but it shouldn’t feel so normalized that we don’t talk about it after the fact. Last night I found my final birthday card from her. I studied the script and the brush strokes made with the black ballpoint pen she held between her tawny fingers. I lay on my floor, sobbing louder than I thought possible. When I sobered up, I couldn’t help but wonder where all of the support I had a month ago went. In reality it’s still there. I just have to reach out and tell people I need them whereas before it felt premeditated and intentional. I still have love and support, and friends willing to jump in at a moment’s notice, but that doesn’t change the overall silence that comes with being a month or so in along your grief journey . We get the support when we’re still processing and stuck in constant fits of snot-infused tears, but not when the grief is causing us to move slower and forget more. When the grief grows into a persistent depressive spiral that invades every single sect of your life, you can’t help but wonder, “Where did everyone go?” Speaking on your grief starts feeling taboo, because it’s been three months, or six, or even years. Grief, death, and loss are universal experiences that touch every soul on Earth but the only time we feel comfortable speaking on it is when the wound is still openly gushing, instead of steadily bleeding over time or weakly scabbed over. Time doesn’t always heal all wounds, and grief is included in there. I argue that as important as having the support when you first experience loss, it’s just as important to have it in the weeks, months, and years to come. We grow around our grief, sure, but it doesn’t happen overnight. It happens over a longer period of time, and having support throughout the entirety of that time is what ultimately makes the biggest difference.

Community Voices

What’s the hardest part about being undiagnosed?

<p>What’s the hardest part about being undiagnosed?</p>
30 people are talking about this