I just don't have the energy to dig up the facts and figures to support this diary. On July 1 of this year my beautiful, caring daughter died of an aggressive form of breast cancer. She was 42 years old.
Though my energy may be depleted, my anger is rampant.
Read Christine's story below the orange swirl.
In January of this year my daughter was diagnosed with Triple Negative Breast Cancer and she underwent bilateral mastectomy surgery. Christine was not well to begin with. She had suffered from asthma for many years, which had escalated to COPD.
But, she seemed to survive the surgery well. The surgeon confirmed. "Everything looks good," she said. "It looks like we got it all." Except, of course, that it didn't go that well. The cancer was already at Stage 2B, having spread to the lymph nodes.
Before chemotherapy could start, Christine contracted pneumonia and further treatment was delayed. Finally on Monday, March 12 she began an aggressive, three-drug chemo protocol. Her weakened body could not withstand the invasion and by Wednesday she was back in the hospital.
Without providing all the details, things went from bad to worse compounded by severe and debilitating back pain. The result: Surgery to remove her gall bladder.
Again, cancer treatment delayed.
Here's where I lost it. It seemed to me that no one was driving the bus. We were getting updates from her surgeon; her oncologist; a pulmonologist; an infectious disease physician; a hospitalist; palliative care; wound care, and the list goes on. Where was the holistic approach to helping my daughter? Who was in charge of her treatment? Hell, who was even coordinating her treatment? Was anyone talking to each other?
In the midst of this chaos and confusion, caring nurses were a God send. They hunted down information and even put their jobs on the line by helping us understand and interpret the jargon the doctors seemed to thrive on.
One other fact: Christine was on disability for the COPD and was also on Medicare. Or maybe Medicaid. No, Medicare. Wait, Medicare was stopped by the hospital in favor of Medicaid. No, she wasn't eligible for Medicaid. And, no, that isn't covered.
We were desperate for help. But we were shuffled around by every agency and medical "expert" we met with.
And then I saw the ad on TV: a cancer specialty group of hospitals promising holistic, personalized treatment -- nutrition, counseling, a team approach with everyone working together. Care primarily for those with the most complex and deadly cancers. WOW!! My heart started beating out of my chest. I reached out to them immediately.
Here's what I was told: Even though Triple Negative Breast Cancer is aggressive and somewhat rare, they couldn't help us. Even though I explained Christine's health history, they couldn't help. Even though I described the disjointed care I believed Chrisine was getting, they couldn't help us.
Why? Because they only have a specific number of Medicare/Medicaid beds each month and they were at their limit.
But, what about next month? Is there a list?
Yes, but the waiting list is long. They were not taking any more "names".
Devastated and devoid of hope we did our best to find care for the person we loved so much. Then even more devastating news: the TNBC had metastasized into her lungs (hence the back pain no one could figure out).
Finally, chemo rescheduled but only one drug... to see if it could slow down the cancer because at this point no way to stop it entirely.
Then the oncologist who had been mainly silent throughout this ordeal said the chemo wasn't working. No more treatment.
We brought Christine home and callend in hospice. 30 days later Christine was dead.
I don't know if a one-payer healthcare system would have helped my beautiful girl. I don't know if the Affordable Care Act might ultimately have helped her had she lived.
Here's what I know. The best treatment should not be available only to those who can afford it. People shouldn't die because they don't have the money for the most advanced treatment options.
Don't misunderstand. We are grateful for Medicare and Medicaid. Extremely grateful. But at every turn our lack of expensive private insurace was a roadblock to getting Christine the care that might have saved her life.
I'm grateful for the 42 years Christine was with us. I'm grateful for her two children, who are living without their mother. I'm grateful that Christine was at home with us when she died. I am extremely grateful for Hospice and their amazing staff.
I'm grateful. I'm sad. I miss my girl.
And I'm angry as hell.