“Little Alice fell
bumped her head
and bruised her soul.”
–Lewis Carroll, Alice in Wonderland
Me too! I recently fell down the rabbit hole myself.
Up until now I have been a very lucky woman! My Stage IV lung cancer has been “dormant” for the six and a half months that have passed since diagnosis. I’ve been largely symptom-free. Except for a dire two-and-a-half-week hospitalization and a month of recovery as the result of a new targeted treatment malfunction, I have been very stable and most gratefully, able to maintain a high-quality of life!
Once I recovered the strength and energy, which had seeped away with a week of dialysis for failed kidneys, a ten-pound weight loss for lack of appetite and a GI bleed, I was able to resume my regular weekly activities. These include lunch with friends and colleagues, some really interesting professional projects, fun ways to keep in shape: Pilates, ballroom dance, and ballet barre!
So although, of course, I never actually forgot that I was living with a terminal illness, I was nonetheless able to put that aside and enjoy a rich and satisfying life.
Dancing with Life
And then, I stumbled and fell down the rabbit hole. The fact that Stage IV cancer was lurking around inside me and was progressing on its killer course was right up in my face! It announced itself during a ballroom lesson.
I know, ballroom dancing may seem like a frivolous activity to some people, but it is one of a number of things that I discovered are really important to me in maintaining a quality of life I find worth living. I treasure the pure physical joy of floating gracefully to the rhythm of a gorgeous waltz in the arms of my handsome instructor, with my scarlet skirt twirling out around me, my silver dance shoes sparkling in the light and a smile of joy glowing on my face.
Suddenly, my lesson was problematic. I became severely out of breath. I could only dance for a couple of minutes and then gasping for air, needed to sit down to catch my breath. I was almost reduced to tears, but too embarrassed to cry in public! My instructor was most understanding, but I was devastated with visions of having to give up dance and retire to my home, an invalid!!
Consulting the Doctors
The next morning I called my extraordinary concierge/palliative care doctor, whose services I had engaged at the time of diagnosis to help me get through this difficult journey as gracefully and free of pain as possible. He immediately arranged for an x-ray.
Thankfully the x-ray showed the tumor had not changed or grown, but there was a significant amount of fluid in the lining of my lung. It was pressing on the lung, limiting the capacity to breathe efficiently. Hence the shortness of breath!
What to do?
Here’s where a good palliative care doctor becomes a special treasure! He clearly, calmly and neutrally put before me the three options available, which I considered carefully in the context of refusing to allow toxic treatments for my already metastasized cancer.
Option 1. Do nothing.
The fluid would collect and remain in my chest causing the left lung to become dysfunctional. This sounded bad, but the truth is that we can survive with just one lung carrying the burden of breathing; apparently something John Wayne was able to do! However, it would leave me unable to dance or even walk across the parking lot without being short of breath.
Option 2. Have my pulmonologist drain the fluid and wait to see how fast it returned.
If the fluid was slow to build, than the pulmonologist could drain it every few months on an out-patient basis.
Option 3. Install a PleurX catheter.
A PleureX catheter is a small plastic tube inserted into your chest that lives there permanently. It has a small external valve that makes it possible to regularly drain fluid from the chest without involving hospitalizations or repeated surgical procedures.
Frankly, I was not thrilled with any of my options but had to make a choice. Doing nothing and remaining short of breath and partially incapacitated was simply not on my agenda. Going for the PleurX catheter seemed traumatic, frankly ugly and a constant reminder of the cancer growing inside me. So I voted for Option 2, having the pulmonologist drain the fluid and prayed that it would collect very slowly.
No such luck! Within a week of the procedure, I was huffing and puffing again! Another x-ray showed fluid at almost the same level as before. Clearly, if I wanted to breathe well, a PleurX was the answer.
Skipping over the gory details, I can now say that I am the proud owner of a PleurX catheter that quietly and unobtrusively pokes out of my ribs and lives under a pure white piece of gauze and a thin bandage of clear plastic on my left side, waiting for me to drain fluid as needed so I can be on my way!
It’s truly amazing what you can discover down the rabbit hole!
PEARL OF WISDOM
Cancer is unpredictable. Just as you get used to living with it one way, it changes again. Keeping the things that are really important to you in the forefront of your mind can help you make difficult and sometimes ugly decisions.
© 2017 Joan Blumenfeld