One increasingly important realization by healthcare professionals is the need to both engage and encourage patients to participate in their care. The following story of recovery and healing from double mastectomy surgery is told by Ev, a grandmother of nine, mother of three and wife to husband Will of 44 years. I asked Ev and Will to share their story because, I was fortunate to be included in Will’s weekly updates during and after Ev’s surgery. Each message not only gave reassurance to family members near and far that she was doing well, but ended with an inspirational blessing for all; the family’s faith first and foremost in Ev’s healing process. Their faith was a silent but strong part of the care team, and their strength as a couple was a beautiful testament of what teamwork and love can do for a marriage and the trials that life presents.
I include Ev’s words unedited, as she hopes they will help another breast cancer patient facing a similar surgery–to find answers to questions, insight to questions they may not know they have, and to find the same peace be it through faith, a loving caregiver or a skilled care team. Ev had all three–the trifecta of healing for her, and as a result, many, many happy people including her nine happy grandchildren, Ev’s daughters, and her partner in life, Will.
What do I do now? I was growing quiet impatient with follow-up doctor visits regarding questionable mammograms, ultra sound screenings, MRIs and biopsies during the 4 years since I was first diagnosed and treated for breast cancer. My husband, Will, and I were also seeing physical changes (dimpling and caving in of the skin) which was now occurring in the breast where lymphedema was prominent and seemed impossible to alleviate. I had gone to physical therapy and done exercises at home for two years. It didn’t work. The lymphatic system in the breast barely worked. The left breast tissue was ruined by radiation and very angry. My practical problem was regarding bras—being size E and weighing 148, I could barely tolerate wearing any bra I tried.
Dr. Moline, my original breast surgeon, said she could do nothing to fix the angry tissue except a mastectomy. She explained that it would be completely paid for by my existing insurance “to make the situation right” after cancer had struck. This was a big factor in my deciding whether or not to have a mastectomy. My oncologist advised me to have a double mastectomy to alleviate further testing of both breasts– “Nothing there, nothing to test.”
Dr. Moline gave me the names of three plastic surgeons. I choose the first and only one I visited. Dr. Williams was very clear, gave us several options, and sold my husband and me on the benefits of a double mastectomy with Tram Flap reconstruction of both breasts; this would all be done in one day during 10 hours of surgery. Dr. Moline would do the double mastectomy and Dr. Williams would do the Tram Flap with the help of her team.
Will was in total agreement. He was positive and started plotting what I might need for this huge surgery. We purchased a leather electric recliner not only for sitting but for sleeping the first week home. The electric mechanism was very helpful. Will purchased a hand-held shower hose with nozzle to fit in our shower and found a folding chair I could sit on for the first showers.
Our faith is very important to both of us so we relied on the Promises of God to make decisions, to live each day and not worry or loose the feeling of peace. Our family, neighbors, and church friends prayed, brought food, sent cards and flowers, (even new PJs), called and visited. Their sense was not of dismay or, “What are you doing?” Attitudes were positive and they seemed to believe and say, “You’ll get through this!” Three pastors visited us and read Psalms and assured us God was with us.
The day of surgery was a breeze for me. A hospital chaplain said a prayer for us before I went to surgery. Will was sent home and the hospital nurses and doctors called him every 2 hours with good updates. Our house is only 10 minutes away from the hospital so he was close. I remember seeing him about 8:30 pm. I was certain no surgery had been performed on me because I felt no pain or nausea. All I really felt was quite a bit of stiffness. I was checked every hour to make sure the blood vessels that had been moved were successfully reconnected and working to nourish the tissue that had been moved from my belly area to the breast area. I had nine drains. I was down to five drains when I left the hospital 5 days later. I lived on ice chips the first couple days, moved on to clear liquids, and ate a salad later on. I was able to get up and sit in a chair the third day. I remember moving myself that very short distance by myself; Will remembers it differently (he assisted). The nurse helped my attitude about getting up by saying, “The first time is the hardest, and after that it gets easier every time.” She was right. It did get easier. I walked slowly into the hospital bathroom and had a shower on day four. The nursing staff and doctors could not have been more professional. I tried to follow all the rules. I was a little bent forward for a couple days.
At home, Will removed all the smaller rugs on hardwood floors from the recliner to the bathroom. He had learned at the hospital from the nurses, how to empty, measure, and clean the drains. I had completely cleared my schedule and did nothing but rest, eat a bit, and sleep. Will was a remarkable nurse once again. He was willing and able to help me and brought his sense of “get it done” with a cheerful attitude. I was unable to keep track of my meds: Oxycodone for a few days, Ibuprofen 600 MG, and Acetaminophen, so Will took care of dosages and times. That was so helpful. Our closest friends and our family were updated daily with a quick sentence or two by email of my progress. Will was able to keep them informed and they appreciated a quick update. All the drains were removed by the end of the second week after surgery. The metal lanyard that held the drain bulbs against my belly was one of my only irritations. Metal is pretty hard. Do they make a plastic one?
I’m back doing most things except lifting much. I can’t lift my grandchildren but I can hold my 3 month old granddaughter. I can reach most things in my kitchen but found weeding last week a bit of a challenge. I have started taking my walks in the park where it is flat.
I am so delighted I had this big surgery. The chance for breast cancer is gone. A reduction in my breast size is also a huge blessing. A caring support group and husband not afraid to help with the recovery process make it all that much easier. I know for sure a top team of doctors can do successful surgery and make you comfortable, but God is the One who heals.
So many of the healthcare stories shared in the mainstream are those that focus on patient harm, or egregious behavior by providers. It can make us forget that while these occurrences are still far too frequent, they are not the norm. For every patient harmed, there are roughly three success stories rarely shared. Stories of care teams, often operating in systems yet to be designed for optimal success, who manage to use the wonderful technology, knowledge and compassion at their disposal to send a patient home safely. While every patient story is of great value, so are the stories of those care providers whose voices are less frequently heard. When patients and providers work together throughout the course of a healthcare encounter real magic occurs. Human connection has power to heal, and will always complement any prescription or treatment. And it costs absolutely nothing…
Here is one of those success stories, recently shared by a colleague. Melissa, a patient in the Vidant Health system, was found to have an aortic dissection immediately after giving birth to her son. She shares with viewers a triumphant and tear-jerking healthcare experience, as well as what made her time with Vidant so positive and successful despite the odds. Following are a few of those highlights for those who don’t have time to view the entire video:
- Melissa felt she was listened to by the care team
- She needed someone to be human and care, and that is exactly what her healthcare team did
- Someone cared enough to push harder within the system when her survival depended on it
Here is Melissa’s story, in her own words. There is a wonderful tribute to the healthcare team that was part of her “family” during this challenging time in her life. If you have time, Melissa’s story is well worth a few moments of yours. It is also a story worth sharing–one that healthcare colleagues and consumers will equally appreciate.