This article is part of the series “One Moment At A Time” about my family’s journey as we help my mother fight brain cancer. Feel free to subscribe below to receive periodic updates about our journey in your email inbox. Thank you for your continued support during this challenging life moment.
YOU CAN DO ANYTHING THAT YOU SET YOUR MIND TO
During various moments of my life I have thought about my mother aging and what it would mean to be her caregiver. And it isn’t an event like a planned vacation that you look forward to. In fact, many of us dread thinking about it even though we know one day it could (and most likely will) happen to us. For those of you that have been caregivers of someone going through a tough medical situation, especially for a close family member, you will be able to relate to this story. And now having become a primary caregiver, I realize that it is something you can’t ever relate to unless you have been through it.
Over the past seventeen years, I have worked in a corporate office environment full of projects, meetings, deadlines, research, office politics, office drama, stress, conference calls, and mundane paperwork. It is what I have been trained to know in my career.
But on top of my corporate brainwashing, my career success has been driven by my ability to think ahead and prepare for various outcomes to different situations. And one thing I owe to my mother is my willpower to succeed. I can still hear her telling me after a rough day that I could do anything that I wanted to do in life as long I wanted to do it bad enough.
And now, as I look at my mother lay in the living room chair as the gorgeous sunlight filters across her resting body, my willpower to succeed has amplified. I never thought I would be in the position of helping my mother through a very tough situation at this point in my life. But I know that life isn’t planned even though it would be much easier if we could plan for things like this.
IN THE RIGHT PLACE AT THE RIGHT TIME
I am blessed to be in this position. Free from the corporate world that once tethered me and able to live a location independent lifestyle. While this is not some type of corporate work project, it certainly has all the elements of what I have been trained to do. However, this situation expands beyond the realm of any project that I have ever worked on.
This undertaking is for the most special person in my life. For someone who is my rock. Someone that I care so deeply for. Someone who has loved me unconditionally from day one. Someone who is loved by so many people because she loved them. It is the most special undertaking that I will ever help with in my life. An undertaking to get my mom back.
I have stepped in and stepped up to do what I was meant to do. Ever since I rushed to the Cameron Memorial Hospital Emergency Room in Angola, Indiana, on that early December morning, all of the years of preparation and training immediately kicked in like the activation of disaster planning. I began to go into business mode.
PROJECT MANAGEMENT KICKS IN
Medicines and treatments began to ramp up quickly and with many people helping out we needed a way to communicate. We created thorough checklists for all of us to follow. Medicine checklists for each time of day. Superfoods checklists to make sure she is getting the right foods that she needs each day. Exercise logs for us to know how much movement she has gotten.
We created a calendar for us to not only keep track of her appointments but to also keep track of visitors and others helping out. Notes to show who is preparing and delivering dinner one night. Who is coming over to visit and what time. Who is taking my mother to her radiation appointment. But also managing what times are best for visitors since my mom has become extremely fatigued from the aggressive treatments that she is receiving.
And then we have to make sure we are all educated about what foods she can’t have and what foods she should have to not only remain healthy but also to ensure the foods she is eating will be efficacious.
I’ve dove into research to find out the most cutting edge treatment methods that exist for my mother’s situation. Sending emails out daily to doctors around the country inquiring about different treatment methods. Joining Facebook groups specific to my mom’s case where families have been extremely helpful sharing proven methods that have worked for people with the same condition.
DEEP PROBE
During her doctor visits, I attend prepared with a list of questions to make sure we understand that we know how to best help my mother. I have quickly learned that if you do not ask any questions, the doctors won’t volunteer pieces of information that we should be aware of. Unfortunately, it is the responsibility of the family or the patient to ask the questions. And sometimes we need to ask the hard questions to her doctors or probe when things don’t make sense. We have encountered several uncomfortable conversations lately.
Late last week when meeting with her radiation oncologist in Angola, I inquired about the point in time that we could actually see visual evidence of what the tumor was doing since we began treatment. My mother had finished her radiation treatment minutes earlier and was sitting in the chair along the wall of the doctor’s office. It was tough to see her head hang low and her arms pressed down on her knees to hold her upper body upright. The radiation continued to build up in her system with each treatment making her more and more wiped out.
Dr. Chang stood in his blue doctor’s robe leaning up against the sink in the exam room as I sat next to him on top of the examination table. He began to calmly explain that the next MRI would occur after she finished her chemo treatment in four weeks but that this next scan would become the baseline MRI. He proceeded to explain that the following MRI would occur six to eight weeks after the baseline MRI. After doing some quick math in my head I asked, “So we have to wait ten to twelve weeks before we will know if the radiation and chemo is actually working?”
Dr. Chang’s arms pulled up and crossed over in front of his chest as he shifted his body weight onto the opposite side. “Well, no, you should be able to see visible signs through her speech and her overall body language,” he explained in his soft voice.
“I’m sorry Dr. Chang, but unfortunately I don’t understand. My mother had an MRI in early December before she received any type of treatment. Now she is receiving treatment. And in four weeks from now, we will do another MRI. I am not a doctor and don’t pretend to know a lot about medical procedures and diagnoses, but I do know that having two images of the same brain side by side should be able to compare something. Can you explain why this is not the case?” I calmly asked trying to make sense of it all.
JUST BE REAL
Dr. Chang stared straight ahead at the wall above my mother’s head and paused trying to figure out how to respond to my question. I could sense he wasn’t quite prepared to be probed. He turned his head over to me and proceeded to tell me that comparing the initial MRI in December with the upcoming MRI was like comparing apples and oranges. And basically said that since she has had this initial chemo and radiation treatment, that it wouldn’t show anything until the second MRI in ten to twelve weeks to have an apples to apples comparison.
I was still baffled. I looked over at my mom and could see that her eyes were closed. She was exhausted and I know she isn’t able to understand most of what was going on. I could have let the topic go as most people would have, but this was my mom’s life.
I wanted Dr. Chang to be real with me. I was hoping he could jump out of the theoretical mumbo-jumbo he was throwing at us and speak to us as if it were him asking about his own mother. Some of what he continued with contradicted what I had researched so I asked if there was a “Radiation Treatment for Dummies” resource that I could review or if there were any decent sites online that he could refer me to. He said he wasn’t aware of any resources that I could review and cautioned me to not get too far into the weeds. He ended with the fact that my mother is getting the treatment that she needs and that they will continue down this path of treatment.
Dr. Chang quickly left the examination room probably thankful the consultation was over. The room fell completely silent as I helplessly looked at Mike with his arm around my mother. I took a large deep breath in and exhaled trying to slow the adrenaline pulsing through my body. After a few seconds of complete stillness, we helped my mother stand up and left the radiation center transitioning into the next phase of our day.
IT TAKES A VILLAGE
One of the most important things that I have learned through this journey is that this full time job can’t be achieved alone. It takes a team to handle everything we need to accomplish in order to help my mom and to ensure my mother can be set up the best possible way to fight this battle. While I have been blessed to have had the training that I can apply to this tough situation, my mother’s husband Mike and my sister Abby have also been equally helpful. It has become a true team effort where we each can bring our strengths to offer up to this situation. Another true blessing.
I have a complete new respect for caregivers of all types. I think back to my mother’s father, while he was battling cancer, taking care of my grandmother while she had Alzheimer’s. Its hard to imagine how he was able to do it all while still taking care of himself. This is one of the hardest things that I have ever had to do. But I know that I will cherish these memories forever. And that we will do everything we can to help my mother.
One moment at a time.
I plan to continue to write about this new life journey. It is a tough topic to write about but I feel writing will be a great emotional release for me and could help others along the way going through something similar. If you would like to receive a weekly update, feel free to enter your email and sign up below.
MY heart is breaking- your mother is a beautiful person inside and out and a wonderful teacher- she has been inspiration for all of the children she has taught- prayers to you all- Trudy Day