Create Life

This past October, in the midst of Covid-19, my healthy, fit, handsome husband - the love of my life - was diagnosed with a brain tumor. It turned out to be glioblastoma (GBM). This is the same diagnosis that was faced by Beau Biden, Ted Kennedy, John McCain, Tug Mc Graw and sadly, many others - both unknown and known - such as the late George Gershwin who passed in 1938 at only 38 years old due to GBM.

First identified in the 1920's, there have been only four drugs and one device ever approved by the FDA for the treatment of glioblastoma in the past 100 years - and these are designed with the hope of prolonging life, but there is still no known cure for GBM.

My husband woke up one morning eight months ago feeling slightly “off-balance.” His mouth was a little crooked and his walking was a bit shaky. I thought he had a minor stroke. We went to his doctor who recommended that we go to the Emergency Room. After some tests, a brain tumor was detected and two days later he underwent brain surgery. This was followed by six weeks of radiation and chemotherapy.

After radiation ended, he continued taking chemo for five days per month with 25 days off. And that’s where we are now as I write this. He goes for a monthly MRI next week and resumes his chemo pills then. He is also wearing a relatively new device on his head called “Optune” which is designed to help prevent cells from dividing further.

This is my first time as a caregiver - but it is not my first rodeo with illness. In fact, all my life I have battled illness - from the patient side.

I was healthy until the age of 15 when I suddenly started getting some strange symptoms. I was soon diagnosed with lupus. I became so ill that I was home tutored during a full year of high school, unable to attend in person.

The disease destroyed my kidney function during my sophomore year of college at Rutgers University in New Jersey and I underwent my first transplant during my senior year, when I was 21. My oldest sister donated her kidney to me.

That transplant lasted 13 years until I was 34. When it failed, I had to go back on dialysis for a year-and-a-half while I awaited a second kidney transplant. Married by then, my husband became my rock - he was by my side through everything - dialysis, transplantation and my recovery.

Four years later, at age 40, I came home from work one day and found a lump on my neck. It turned out to be lymphoma, which doctors believed was the result of taking transplant meds long-term.

I underwent massive chemo. An IV pumped it through my veins five days straight, 24/7. I had breaks in between to come home and recover for two weeks and then I’d go back - for a total of four cycles. Again, my husband was right by my side. Our daughter was three-years old at the time and my husband was there for both of us. He brought our daughter to visit me during my treatments and kept our home life as stable as possible.

While lupus, dialysis and transplants had affected my quality of life, the lymphoma made me question life itself. It shook my entire existence - I didn’t know if I’d survive.

When chemo ended and I beat it, I was so happy to live again. I wanted to be healthier than ever and I was done with taking any meds that I thought I didn’t need - that included anti-anxiety meds I had been taking for years. I counted the pills down, split them in half, in quarters and then gradually stopped.

The result? Massive depression. I had experienced sadness and fear but never understood depression - until I went through it. As hard as physical illness had been, depression was at least equally as hard a battle as I could barely muster the inner mental strength to fight. But with the help of my husband, a therapist, new meds and every bit of inner fortitude I had left, I fought.

Exhausted and worn down, after about a year I got back on track. Ready to live, we took a few wonderful family vacations, hunkered down on some professional endeavors and got back to life.

At this point, my husband’s PSA’s had been on the rise so in the back of our minds, a bit of worry lingered but we tried not to let it hamper our days - until he was diagnosed with prostate cancer.

Yet again, we mustered our strength as he had his prostate removed. With that, the PSA levels dropped and we felt we could move forward… and we did. We enjoyed some more vacations, regular daily life returned and we found our groove - until this past October.

I am writing this as we are in the midst of my husband’s brain cancer battle. I am beyond worn, exhausted, sad, mad and scared. Of all the battles of battles - of all the times I’ve thought that once I just get through this… of all the things we’ve endured… I want to say something wise and insightful but the truth is, I have no answer. I still question hardships with my same one word - Why?

As I get older, I know more about life, about suffering, about falling down and getting up. I know more about love and what it means to truly care and to be there and show up when someone needs you. But, with all of the knowledge I’ve gained, I understand less than ever. Nothing seems to make sense.

And so, when I saw this contest I had to apply because there is one thing I do know. To me, writing and creating is more than fun. It’s more than a hobby. It’s more than an action. It is the one thing that has gotten me through my life - through it all.

When I couldn’t find the words, I found a way to express myself by painting. When I fell apart, I worked to weave my broken parts back together by knitting, traditional crocheting, bead crocheting and doing beadwork. When I could not fully get out my anger and rage about a diagnosis, I took stacks of old dishes out back and destroyed them into fragments that subconsciously represented me to me.

I then took each broken shard and found a way to fit it back together through mosaic.

I studied stained glass similarly the same way, taking sharp broken pieces and putting them together in new ways that sparkled and glimmered when the sun of a new day poked through. And pottery - I spent hours at pottery wheels, trying to center myself. I knew that on days I was off-balance, nothing I created would come out straight but on days I felt whole, connected and grounded, my pieces would just flow.

Creativity to me is life. It gives us an outlet to be, to express, to rage, to cry, to break apart. And then it gives us an opportunity to come back together in new ways - we are changed but we are whole - and we are here. We have new uses and purposes and newfound beauty.

There are no rules, no good or bad, no right or wrong. There is just our own creation - and that is art. What speaks to me might not speak to others but it is mine - my expression of my pain, my self, my style, my right.

There are no limits, no restrictions, no boundaries. Through art we can be tiny and rigid and perfect or we can be big, beautiful and ruthless, wiping out all boundary lines and letting our canvas be endless. We can create anything, we can express anything, we can feel anything, we can be anything.

And that is what creativity means to me. It is my freedom, it is my strength, it is my life. It is the one thing that has gotten me through sickness and health, good times and bad. Through art and self-expression, I will always have a way to turn inwards and let it out - and then take a deep breath and - although broken, tired and worn - find my way back to the soul of me.