From Caregiver to Patient and Beyond
1/2/17
Five years ago Lisa Mackall spent so much time writing about her husband’s traumatic brain injury on CaringBridge she published a book of her journal entries (27 Miles: The Tank’s Journey Home). At that time she was writing as a wife and caregiver. She went on to become an advocate for people with traumatic brain injuries and the co-founder of Blue Watch, a nonprofit that offers wellness resources to law enforcement personnel and their families.
Her second foray onto CaringBridge came as unexpectedly as her first. This time she is writing as a patient. Her first entry on March 4, 2016, offers an introduction that, while written in fairy tale style, is anything but that.
Once upon a time a wife came to CaringBridge to tell the world about her husband. See, he was a police officer and had crashed his squad car and almost died. But this brave warrior didn’t die. Instead, he fought back from his brain injury to return home to his family and kept working hard to return to his family in blue.
But alas, he could not return. His wife, saddened by his despair, stayed by his side, loving him and encouraging him to find a new life.
And they did. Life moved on. New jobs, graduating children, new house. The sun began to shine again.
Until one day the wife was told some terrible news.
Breast cancer.
That can’t be! Haven’t we fought enough? Aren’t we done fighting the hardest of battles?
Apparently not.
The wife, remembering with fondness the purity of writing and the clarity of thought, returned to CaringBridge once more.
Seeking hope, purging emotion, and praying for healing.
This is the second chapter of the Frank and Lisa Mackall story.
Last March, fresh off a vacation with Frank, Lisa learned that what she thought was an infected lymph node in her armpit was actually metastatic breast cancer. She was still reeling from the news when she was inundated with offers from people asking what she needed. She put them off. That she would need help again was unfathomable.
Lisa may not have recognized what she needed, but others did. Before she could protest there was a meal schedule. Two GoFundMe pages were established: https://www.gofundme.com/lifting-up-lisa-and-family and https://www.gofundme.com/24xuugzg. Ever the caregiver, Lisa says, “It took the reality of chemo and the impact of that on my body to feel like I deserved anything, because then I started to feel unwell.”
A cancer diagnosis naturally breeds questions such as why or why me? Lisa’s diagnosis certainly did. “I did all of the right things, had my mammograms regularly, had strange lumps and bumps looked at and I still ended up here.” And the family had already gone through more than most with Frank’s near death and long recovery.
With parents and siblings living out of the area, she counts her in-town family as those that surround them, those who she refers to as “the village.” They are the friends, colleagues, and law enforcement folks who seem to show up exactly when she needs them.
In the second chapter of the Mackall story, Lisa’s co-workers at St. Paul’s Regions Hospital have been indispensable, much as Frank’s colleagues were. “I am blessed to work at the same place that I receive treatment, which made it easy for me to feel comfortable as I lost my hair, stopped eating well, became tired, and had to reduce my work hours. My team is one of my greatest blessings, and even at my most sick, and in my own hospital, my co-workers were always there for me.”
The village has expanded to include fellow travelers. “Through this trial I have again been incredibly blessed to meet people that are following a similar path. People that I would never have met, that have made a big impact in my life. These people are amazing. Fighting the same battle, knowing the same scary reality…there are so many of us.”
Lisa’s treatment has been exceptionally grueling, with dire interludes along the way. Soon after her diagnosis she underwent a 12-week course of chemotherapy. Surgeries followed the drugs: the double mastectomy and a prophylactic ovary removal in early October. But her bowel was nicked during the second surgery. And a nightmare ensued.
It took days to recognize that sepsis had infiltrated her body. Lisa returned to the hospital, had three emergency procedures, was put on a ventilator, and spent more than half of October there, much of the time in intensive care.
She went home with a giant, open wound on her abdomen. Movement was problematic; pain was excruciating.
She returned to the hospital twice in November and again in December. Another bout of septic shock landed her in the ICU again. She did her Christmas shopping on Amazon while heavily medicated but didn’t recall doing so until days before Christmas when packages began arriving at their home.
She regrouped over the holidays and reluctantly embarked on a five-week course of radiation.
When we are thrust into a caregiver role we become myopic by default. We can only juggle so much. For years Lisa had been focused on Frank and their four kids. “They are always my first thought and biggest worry, and they were able to make it through those very scary times when I was not even conscious.”
“It’s easy to lose perspective of everything around you when focusing on someone else so much. I have had months where I forgot to even look up and ahead because I was so focused on what I had to do day in and out to make sure Frank was okay.”
For a long time she didn’t allow herself to feel the fear that accompanies a metastatic cancer diagnosis. But fear is dogged. It will hound you. Lisa finally acknowledged the fear that not just she, but all her family members, live with.
“Cancer hit us hard, and in a way that I never imagined. It changed our priorities even again, and made us look at what truly mattered in each day. Instead of thinking that I had to do everything, I had to break away from that control and give it to other people, including Frank. I feel that it helped me to see more of him than I have in a long while, things that he can do, more than I thought or allowed in the past either from fear or just me being controlling. It is easy to take everything over, it is much harder to trust those around you to take care of what is most precious to you.”
As the family welcomed 2017 together, Lisa returned to CaringBridge with her reflections.
Five years ago, the holiday weekend was just like this one – an extra day off before returning to school and work, a day that was expected to be relaxing and fun. It didn’t happen that way. Instead, tonight, right after midnight, will be the five-year anniversary of Frank’s crash. Five years. It feels like forever and a flash at the same time – it feels like yesterday, and a lifetime ago. After the last year with such a huge focus on my own health, I feel that I have been given a glimpse into the world of what a fighter Frank was while he worked to recover from his brain injury.
Although I was with him every day, being on the other side of a life and death battle is very different – and it changes your perception of everything around you. You see every day differently; moments are made and cherished, recognized, understood, and lived. If you choose, peace can reign, when living without fear of the future, and knowing that life will carry you where you belong.
I believed it 100 percent when Frank got hurt, and I believe it again now while fighting to recover from breast cancer. I was privileged to witness a man fight for his life and would expect nothing less from myself at this point. It is a choice to do everything that I can to fight back, and fighting back is what I am doing.
Attitude is a powerful companion to drugs and surgery when combatting cancer. When Lisa was diagnosed she didn’t freak out. Rather, she told herself that she would be okay. She’s not Pollyanna, she says. There were scary times and could likely be more. But in a bigger picture way, she believes it will be okay. “My faith grew tremendously when Frank got hurt, and it’s as solid if not more so today.
Lisa could certainly harbor bitterness or anger. But she’s made a different choice. “Unfortunately, things happen, and I became one of the .085 percent or so that had life-threatening complications from a simple procedure. It should not have happened, but it did. Thankfully, I had great care and a fighting spirit. And I lived to tell about it, and to continue fighting.”
She looks for the “better” in each day. “Like all things, time will continue on, and with each day, I expect things to get better. Truth be told, not every day is better, but I can always find something that is better about each day. Whether it is driving myself to an appointment, or braving completing two loads of laundry in one day, it is better. Today, with no tubes attached, I did my first yoga in six months.”
What does she see for herself on the horizon? “I really look forward to becoming part of the Dragon Divas (a dragon rowing team of breast cancer survivors) this summer. Hopefully, I will be well enough to at least attend some events and participate at some level. But someday I know I will get to roll with them.”
I’d place odds on her doing just that. After all, this is a woman who writes, “I know, and hold on to the fact that we can, and will, focus on what is important, and do our best to look forward into our lives. It can be done, regardless of what else comes into our lives. We have lived looking forward, not back, for five years. And we won’t stop now.”
Author’s takeaways:
Trials and tragedies stretch and educate us. Lisa is an astute learner and a powerful teacher. My takeaways from the Mackall family’s story:
Appreciate what you have.
Understand how hard things can be.
Everything is relative. She says, I know my suffering is minor compared to what others deal with when trying to fight cancer. I understand that my pain is not the worst pain.
Put the positive in your pocket and withdraw it when you need it.
Give up control. You may give another person an opportunity to grow and soar.
We can find the “better” in our experiences if we choose to look for it.
What are your takeaways?
The post From Caregiver to Patient and Beyond appeared first on Caryn M Sullivan - Living a Life of Resilience.
