the pea & the bowling ball

How do you casually talk about summer plans or play a board game while you lay your hand on your cancer filled swollen belly and gasp for breath?

While the rest of the world eagerly looks forward to a return to “normal,” I emerge from the pandemic a fragment of my prior self. I have so much pain both physically and emotionally I barely recognize myself. One of the many things I am struggling with right now is the balance of “living life to the fullest” while also dying of stage 4 breast cancer. I don’t mean to be dramatic - it’s just the truth.

Since March I haven’t felt stability. And, the free fall is becoming more than I can handle.

In March we decided to insert a drain to address the persistent malignant fluid filling around my left lung making it hard to breath. After a difficult hospital stay and slow recovery we thought we were on our way to stability. Little did we know this was just the start of our problems. The drain gradually produced less fluid, which was a good sign. However, the fluid went elsewhere - basically making the uncomfortable drain irrelevant. My abdomen, pelvis & right lung filled with cancerous fluid and I became increasing uncomfortable. I had two procedures to drain the fluid - another thoracentesis of my right lung and a paracentesis of my abdomen - resulting in 8lb instant weight loss. However, the relief was temporary and just two weeks later I’m about where I was prior to the procedures with the addition of swollen legs and ankles.

I had a port inserted & we tried to start IV chemo last Tuesday, but I had a severe allergic reaction to taxol sending me into a terrifying anaphylactic shock.

We are hoping to try another chemo this week, but are awaiting insurance approval.

The thing is, we don’t know if this chemo is going to address the fluid… the only thing to do is try. In the meantime I am caught in this bizarre place of trying to live life while also feeling completely overwhelmed with the fear of the future, cancer progression and the next thing to go wrong on this negative run.

Not to mention that I physically feel terrible- I am exhausted, swollen and short of breath. I can’t do things that bring me joy like walk, yoga or much of anything. I spend a lot of time on the couch. Sad.

I often say I hold fear and joy in the same hand at the same time. Right now fear is a bowling ball and joy is a pea. I’m not letting the joy slip through my fingers but I don’t know how to laugh when the need to scream and throw things and crumple on the floor in a heap of tears is really what feels more appropriate. I’m trying - tentatively making plans, spending time with family, trying to keep our family on track. I feel joy and gratitude - it’s there, just being smashed by the fear. Friends kindly comment on the beautiful weather or activities of the weekend, I nod and smile. But, joy is so far away.

This week we will get report back on my bone scan. When I had bone only disease, this was the scan I anxiously waited for. Today it seems like just more information in a big ol’ mess. And, I will hopefully start chemo - without an allergic reaction.

Most of all we hope for a response to the next treatment: decreased swelling, improved breathing. A spontaneous smile.

I know I say it all the time - but I can’t say this enough… don’t take a single healthy, happy day for granted. The simple opportunity to look to the future with anticipation and optimism is a gift. The chance to “worry” about regular issues like our bowing wood floor, broken dryer or messy kids rooms would be refreshing. Hug the people you love.

I look at our little family and my chin quivers. I can’t believe we are in this situation. Tears fall from my face because it hurts to loose the life we know as a family, the laughter, adventure, joy. It hurts because we share an incredible kind of love.