Chemo Round 3
Monday, March 19th found me sitting in the treatment chair listening to the rhythm of the pump as I received my third treatment. Part of me is amazed at how fast we are progressing through the treatments. Time moves on and in a short while we will be looking at this round of treatment in the rearview mirror.
We are using different drugs which my body is responding to in very different ways. I foolishly thought I could plan on moving through this round like I did last time. It has taken me a few weeks to understand and accept the reality that this round was going to be different.
I do not bounce back as fast from treatment. Chemo weeks find me struggling to function well. Friday of each treatment week feels like someone turns a switch and I feel more like myself. The week between treatments slowly begins to feel like normal. I move slow, get tired, have a hard time concentrating and nausea comes and goes without warning, but I am able to function. During non-treatment weeks I hear lots of people say, “You look great.” The truth is that simply looking at me would not reveal the reality of what is going on in my life.
During the ebbs and flows of treatment I have been able to maintain an active work schedule. I have found time to focus on what really matters. There have been conversations that move past simple things and towards deeper realities.
Care giver, Care receiver
Nancy and I have adjusted back into our caregiver, care receiver roles. It is not always easy for either one of us. I do not always want to be cared for, even though I may need it. The weight of moving through life as a caregiver can become heavy and there are times Nancy becomes overwhelmed.
I share this next piece of life not because it is pretty, nor particularly uplifting. It does, however, capture the reality of the challenges caregivers and care receivers struggle through.
I am getting ready to go on a trip. Nothing big, two days, one overnight. It is the kind of trip I used to take a couple of times a month when I was healthy. I would work into my schedule little mini-retreats or conference times for me to grow, learn and recharge myself. I have been looking forward to this trip. It is a sign to me that life is somewhat normal and that I can live and move in ways that I consider healthy. It is a sign that I am ok and still independent.
Nancy, my primary caregiver, views the trip very differently. Will I have the strength to drive five hours to my destination? It is a fair question. Nancy does most of our driving these days. She wonders what would happen if I was five hours away and suddenly became ill. Who would watch out for me? What would I do? How would she drop everything and rush to be with me?
Motivated by care and concern for me Nancy went ahead and arranged her work schedule so she could travel with me. Her plan was to drive me to my meeting, thus relieving stress on my body and making it a safer thing for me to do. After rearranging schedules and making sure it would work she was excited to share her new plan with me.
What I heard was devastating. She did not think I was capable of driving myself on this trip! What in the world did she think was going to happen? This was my chance for a few moments of independence and you do not believe I can handle taking care of myself? It was crushing.
I expressed those feelings, which in turn hurt Nancy. All she wanted was to help me do what was important to me. She had worked to rearrange her schedule so she could support me and I failed to see the support.
It took me a few days. A few days to realize that my frustration had nothing to do with Nancy, and everything to do with “my new normal.” I was mourning the fact that I have lost a big piece of my independence. The days of moving from one thing to the next, taking quick trips, stepping in and out of daily routines to help maintain focus and stability are over. The Dan of years ago would have thought nothing of this trip. My only worry would have been if my bag was packed.
Today there is much more to worry about. My caregiver does a lot of the worrying. We are learning what it means to walk together as caregiver and care-receiver. There are moments we both have to take a deep breath and understand that what we are feeling is not caused by the other but is a result of the journey we are on together. We are both grieving the loss of what once was and are burdened by the new realities of living with long-term illness.
Nancy is going with me on the trip. I have decided to think of it more as a mini vacation for the two of us. My hotel reservation was changed, we turned my one night stay into two. We are looking forward to a few days away…even if there is a meeting to attend one day.
If you are a caregiver, I hope this in some way helps you navigate your journey better. If you know someone who is a caregiver, I hope this brief glimpse into our journey can help you understand the difficult road care givers often walk. It is not easy. Everyone is adjusting to new realities and sometimes it can be difficult. The truth is caregivers often walk alone. They need a place, a friend, somewhere they can share their struggles and draw strength for the journey.
One of the ministries I am most excited about at First Baptist Church is our Caregivers Support Group. They meet twice a month and provide a place for caregivers of all stripes to come and draw support from one another. If you are looking for a place to draw strength for the journey you are always welcome here.