There are no life lessons that I learned through my 6+ years with cancer that could have prepared me for this last cancer recurrence.

In April 2025 I was paddle boat racing, working out at the gym and only 2 months later I started to run out of energy dragging myself around. and in July’s pet scan the tests showed that the cancer spread considerably. 

What followed were blood transfusions, a brief hospitalization at the Koch center’s hospital floor where I was the first person to get legionnaires disease, followed by a brief period at home and then back to the hospital. At the time of this writing, it’s been over 37 days with no discharge plan in sight. it feels like it’s all going downhill.

There’s a lot to say about everything that’s been happening, however I need to learn more about my coping skills  as my body is being is taken over by malignant lymph nodes but I’m trying to learn about living on an emotional roller coaster. 

I learned that I am not always mindful of my feelings. I erroneously think I have emotional intelligence, so when I was first diagnosed 6 1/2 years ago, I asked myself, am I ready to die? In retrospect, it was more of a philosophical question because with this recurrence, the same question asked now terrorized me. I always believed that when the time came I would not want to be resuscitated or intubated, but do I still believe that? I don’t want extreme measures to keep me alive, I don’t want to live if there is no quality of life, but then another part of me sneaks out of the confusing muddle and says, “you’re not finished yet.” This realization is confusing, I want to be able to clearly say yes or no but I guess end of life issues are not so clear. In fact it’s frightening.

Then there is the issue of patience, an essential when you are in the hospital. The nurses are dedicated multi-tasking marvels but that doesn’t make waiting any easier. From commodes  to  cancelled procedures due to other emergency cases, the waiting turns into angry frustration, but that doesn’t make the situation better.The frustration I feel makes me realize how helpless I am and I have never been helpless, a feeling that is really hard to adjust to

Frustration, anger, and helplessness merge together like a tornado with me at the center of it, which is overwhelming until I realize that is my learning opportunity, however I also realize that among all those feelings is a lack of trust which could be the crux of the matter.

Trust has been a lifelong issue. Waiting for my name to come up at MSK’s infusion center, in the back of my mind I am genuinely worried that I will be skipped over so even though I don’t mind waiting, I feel compelled to ask how many people are before me just so I can be reassured that my name is there.  Lack of trust makes life complicated but there have also been occasions where it has  also protected us.

The lack of trust seems to be related to the need for control, which is nonexistent in a hospital and in life in general. Earlier on in my hospitalization I needed a surgical procedure to remove fluid in my lungs. It kept getting cancelled due to emergencies which left me screaming with frustration. It was infuriating having my needs bypassed. “My cancer is spreading rapidly because the legionnaires disease – that you gave me – is preventing me from getting chemo!!  Isn’t that an emergency too?” The frustration was so immense, like a turtle, I  retreated into myself. I was numb. Thankfully my family advocated for me, but how many times do I have to experience this awful helplessness before realizing it’s time to change the dance?

So with the issue of developing a new coping mechanism, one of the ways I learned about trust was when I let male personal care techs wash my body. At first, I was uncomfortable and shy allowing a man to touch my private areas but out of necessity, I realized they are trained professionals also, and in truth they have often been the most gentle and thorough of techs. 

I began to realize that it’s all about trusting the process. Yes, sometimes we have to advocate for ourselves, but when I saw that I did all I could, I just let go of the tension and  centered on the fact that my procedure will get done – on their time, not mine. I surrendered. It felt euphoric, and surprisingly the calm I created was a way of being in charge of myself.  It doesn’t happen all the time, but trusting the process and being mindful of my feelings has helped me cope with this cancer rollercoaster.