Hope for Denise

Hope for Denise

The truth is, I find myself writing this story about my dear friend of 46 years, Denise Polites McMahon, for selfish reasons.

I would rather write this story than write a eulogy.

Denise and I grew up in St. James, NY and we met while attending Smithtown High School East. We share a lot of life and love through the good and the bad.

A few months ago, I called to check in with her. I knew that, since November, 2019, she had been struggling with some health issues. As she lives near one of the most renowned and cutting-edge university hospitals in the country, Stony Brook, I thought at the time the health issues would be addressed, cured and she would move on with her dreams of relocating her home with her husband of 26 years (together for 29!), Sean, to South Carolina to be near their only son, Nick, who currently attends Clemson University.

She gave me an update on the status of her health which included the results and, in many cases, inconclusive results of a battery of tests, sonograms, EKGs, CT scans, several requests to do blood work and take urine samples.

She went on to tell me about the several and sometimes weekly appointments with her primary care physician; of being referred to several specialists including a cardiologist, endocrinologist, gastroenterologist, urologist and a nephrologist. Sometimes it would take her weeks to get just get the appointment, only to get a last-minute call from the office, cancelling it, telling her they would not accept her insurance.

She recounted the disputes and constant follow up telephone calls with the insurance company over failure to pay covered expenses. This resulted in a very embarrassing and degrading encounter with her primary care physician’s office when she showed up for a scheduled appointment and the staff ESCORTED her out of the building due to an administrative error and failure of her insurance company to make a timely payment to them. I mean, seriously? You have a patient that is under your care, that is in severe and debilitating pain, who is failing to thrive, who looks to you for medical advice and guidance and you have your staff ESCORT her out of the building due to a bill? She wasn’t even allowed to talk to the doctor.

And all of this was happening as she became more and more sick, enduring continuing and intense symptoms, middle of the night ER trips and several overnight hospitals stays.

The last straw for my dear friend was when, during an appointment with one of the specialists, he referred her to a psychiatrist insinuating this was all in her head.

Denise’s journey through this medical hell was told to me with intermittent tears and courage, and a voice filled with emotion and fear. Fear that there was no hope and no clear path to wellness or back to the vivacious life she once had.

Then I heard this from my dear friend:

“Donna, will you do my eulogy? Will you say something nice about me for my family. I want to be remembered as a good mom and a good wife.”

How heart breaking to hear those words from a once upon a time fiery, feisty, full of life and laughter woman that is so absolutely devoted and loving to her husband and son. A devote Greek Orthodox with a strong belief in the power of prayer and God; of always doing the right thing. Who once loved to cook beautiful Greek dishes for family and friends so much that she opened up her own catering business for a bit, but who now cannot stand long enough to make even the simplest of a meal.

She cannot sleep. She cannot eat. She is down to 95 pounds when we last spoke. She had to request a leave of absence from work and then, after a time, she received a notice of termination as she had used all of her leave. Simple chores, like food shopping and laundry, are impossible for her now. She cannot drive. The pain is too intense. Every day is a challenge and she never knows what to expect. Most days just getting out of bed is a struggle.

While her husband, Sean and son, Nick are loving and supportive, they watch, powerless, as wife and mom fails more and more each day.

All of this is due to a 1 centimeter hormone secreting tumor on the left adrenal gland called a Pheochromocytoma (“Pheo”) which is overproducing adrenal hormones. It sounds so innocuous but the symptoms are devastating and damaging to the body, releasing an excess of toxic hormones into the symptom.

Denise’s symptoms include life threatening high blood pressure, body tremors, panic attacks that could occur even when asleep, heart palpitations, trouble breathing, shortness of breath, hypertension, headaches, stomach issues that feel as if the body cannot digest food, vertically split fingernails that become painful, severe back pain, profuse sweating and hot flashes; feeling like you just ran a marathon; vision problems and general malaise.

If not removed, the damage done to the body by these toxic hormones can result in death.

None of the doctors or specialists that Denise has seen are willing to operate on such a small tumor and none of them conclusively agree that this is a Pheo except ….

Hope.

Hope is powerful and comes in many forms.

For Denise, hope came when she joined a Facebook support group for people with a Theo. There she learned about Dr. Tobias Carling of the Carling Adrenal Center in Tampa, Florida.

Denise sent all of her results from the battery of tests she was subjected to since November, 2019 to Dr. Carling. He not only reviewed and diagnosed everything quickly, but he called her personally and spent a wonderful 30 minutes on the telephone with her. His words were comforting and validating and gave her the hope she needed. He started the conversation with, “I cannot believe you’ve lived so long with this tumor and no one has helped you.”

And then the words, “I can and I will remove this tumor for you. You will get your life back. I want you scheduled for surgery within the next 2 weeks.”

How wonderful is that?! My friend had hope and a path.

True to his word, his staff called and surgery was scheduled for October 5, 2021.

Then, the devastating news. Insurance won’t pay for the $25,000 surgery because it would not cover an out of state doctor. Denise would have to pay out of pocket, which may be an option of some, but it is not an option for her.

Hence, the conclusion of and the reason for this Go Fund Me plea for help and for hope. Time is running out and I cannot let Denise give up hope. There has to be a way to get her to Tampa, Florida and in the capable and WILLING skilled surgical hands of Dr. Tobias Carling.

She has so much more love and life and laughter to give and to live and quite frankly, while this was painful and sad for me to write, I cannot imagine writing my dear friend’s eulogy.

When going through my own personal struggle, I read an affirmation that resonated with me. I took a sharpie, wrote it on my bathroom mirror and each morning I would recite it 3 times before going to work.

It said, “There is always help. There is always hope.”

It gave me comfort. It gave me hope. It helped me to believe that I was NOT going to fail and now, looking back, those words were accurate. I found help and I found hope. And, I didn’t fail.

I have to believe that, when the darkness shadows our lives, and it will and it does for all of us at different times during our own journeys, God and The Universe can and will find us help. We just have to ask for help.

So now, with these words, I ask. I ask for your help. I ask for your hope.

Please help me give Denise, Sean and Nick some help and some hope.

God bless.