I know that I am a small sewing business and love to share all my creations with you. I am also a daughter, a wife, a mother, a sister, an aunt, a friend. Today, I need to share some things because writing is one of the few ways I can hope to quell my unquiet mind. You know, the one that keeps you awake at 2 AM
This past week I attended two funerals for friends who died of cancer. I have another friend who was getting her annual MRI as part of her cancer follow-up. My late brother battled cancer. We all are surrounded by those facing this disease. This past year, I have walked the journey with another friend and it has been my closest experience to the daily trials of a cancer patient.
My friend, Karen, is more than a friend. She is part aunt, part mom,100% beautifully kind and sweet. Her few relatives are out of town. She has a devoted friend and companion. And then she has the unruly clan – my siblings and me – that she babysat when we were youngsters!
About a year ago she was diagnosed with uterine cancer. She later underwent a radical hysterectomy followed by chemo. We took a cancer class. We got all the things cancer patients might need. We worried. How will she handle chemo at 72? Will she be nauseous? Will her hair fall out? We encouraged her to talk to friends that had experienced cancer treatment. I can’t imagine the fear and uncertainty that someone experiences when they face the word cancer. It can cause that person to wonder, “why me? What did I do wrong?” As if the disease wasn’t enough, the poor cancer patient has to do battle with their mind, causing them to isolate themselves from the rest of the world.
The journey began, first with complications from the surgery and then chemo. And then my eyes were opened to what “health care” is today. Health care is no longer medicine. Practicing medicine is both a science and an art. I recently read “Slow Medicine,” a moving memoir of a doctor and the lessons she learned from various patients and experiences within the medical profession. It illuminated to me the lost art of medicine – the practice of a doctor seeing the whole patient – as a complete human being and complete body. I don’t understand all the machinations of today’s health care and medical systems. I do believe we have excellent access to high technologies and specialists. I do believe that we have kind doctors and caregivers. But I also believe our system is broken.
Health care is NOT explaining over the phone to a friend how to change the dressing of an open wound that requires skilled care to manage.
Health care is NOT telling a patient that the swelling in her legs is probably lymphedema and never explaining that this is a lifelong condition that needs to be treated.
Health care is NOT plopping a patient in bed and never helping her move.
Health care is NOT physical therapy that assesses a patient who needs to walk up eight steps to her apartment – and doesn’t bother to test her on steps.
Health care is NOT sending the wrong patient records to insurance.
No, health care today deals with each problem as separate entities. My friend Karen’s lymphedema became so severe, her legs filled with fluid, hardened and were so heavy she couldn’t lift them. One sad day we could not get her up her stairs and she hasn’t been able to return home. But we are determined to get her home, despite what the medical health care system throws at us. It shouldn’t be this hard.
We fought to get her to a skilled nursing facility so she could begin to get the PT she needed and regain strength. A day after getting her to the SNF, we ended up back in the ER because her discharge orders did not contain an important medicine. After being in the SNF for seven days, she received a denial from Medicare. Medicare for all? I am witnessing Medicare for one and don’t like what I see. We assembled four appeals, extending her stay to 19 days and paid out of pocket for another 10 days while they reviewed and later denied the last appeal. We fought to explain the whole picture – that she had just begun lymphedema therapy – and that with continued PT she would be able to go home. But insurance companies don’t see a human on the other side of medical files. Thankfully, we found an assisted living that could provide a respite for Karen and where she could still receive PT. Still, there were struggles during transitions and delays caused by administrative and bureaucratic issues.
This past month we made the rounds to her numerous doctors, begging any one of them to manage her care. None seemed willing. Oh, they might order a test here and there or think about a medicine they might tweak. But none seemed to see the patient, the person. Through it all, our dear Karen was strong. But she also feels like a burden. And I can understand why in this system that beats her down.
She landed in the hospital again this week. During that time they consulted palliative care and decided to talk to her late one evening, after we had been at the hospital for 12 hours trying to catch all the specialists. And what Karen heard this doctor say is that she had 4 to 6 months to live and she needs to evaluate her code status. She called her friend and he called me. We sobbed. We have all been fighting for so long. When I finally got in touch with this doctor, he explained he did not say those exact words to her. His assessment did not jive with what her oncologist had told us – that her cancer is in remission. We told him at this point, we are still working to get Karen home and we didn’t need his services.
Meanwhile we are sitting on a hospital floor with multiple beds in a room. Presently, the rooms are filled with patients coughing with pneumonia. I asked the doctor if we had to worry about the new patient brought into Karen’s room. He replied that since chemo had ended her immune system is stronger. Later, after going to the cafeteria, I returned to chaos in her room and everyone donning face masks because the other patient, who had been in the room for 15 hours, has Influenza. Why wouldn’t a health care system test patients for influenza rapidly before putting them in shared rooms? It’s a system I don’t understand.
If I feel so beaten down by this health care system, imagine what my friend feels.
I am soon to be a proud mom whose daughter is graduating from medical school in May! She has been able to help advocate for Karen in person while doing some rotations here and she remains an advocate via the phone. We have multiple Google documents where we keep a history of treatment, appointments, questions, and important information. I know my daughter has learned important lessons from the patient and patient’s family perspective. In a twitter thread, she recently wrote:
“In helping to advocate for a very sick loved one throughout a complicated medical course, I’ve observed that the healthcare system hates families. This is a strong statement, and is not meant to apply universally. But we’ve encountered such significant resistance to family involvement and advocacy. Our loved one has multiple complicated medical problems and can hardly keep track of what medications she takes, much less navigate the complexities of the healthcare system. Yet, our obsession with patient autonomy, and, I imagine, our own pride, has formed healthcare professionals to despise the presence of family, and to bristle at their efforts to speak up for the patient. I acknowledge that families of patients may not always have the best interests of the patient at heart, but might it be possible to start from a place of presuming the goodwill of family, especially when they are present and attentive to their loved ones’ needs? We have experienced a profound loss of trust in her providers, and this has been primarily due to poor communication with family at every turn. We owe so much better to patients, and to their families.”
Walking this journey with Karen has been challenging. But who am I to complain? I’m not staring down this horrible disease. This journey has been a lesson in health care. It has given me pause to think about “slow medicine.” It has also been a blessing to spend time with my friend, even though so much of that time is spent waging battles with the health care system. It’s teaching me to grapple with the mystery of pain and suffering. Karen is showing me the grace and courage it takes to face each day.
On a final note, the beautiful part of having my own business is that I have a flexible schedule. This has enabled me to spend time at doctor appointments or at the hospital – sadly, so necessary. However, I have a long list of projects and some time-sensitive deadlines to meet. My family and assistant are helping me when they can. Before Christmas I shared my story with clients because I just couldn’t squeeze any more time out of my day. My clients were so lovingly kind – many even offered to pray for Karen. So thank you to all of my clients for your patience and support. Know that I am plugging away at my projects and, as always, reach out to me with any questions.