Silver Linings

Cancer Diary

Silver Linings

When first presented with my cancer diagnosis I believe I was in shock. My journal entry for that day begins with the “f-word” written in four-inch letters. It was hard to imagine anything but doom and gloom on that day. Seven months later, and I’m surprised almost every day by what I call silver linings. I would not have believed on that first day that there could be such a thing as silver linings on this cancer journey.

I just returned from a week in New York, where I experienced so many silver linings I am going to honor them here: 

One Week of Silver Linings: 

• I’m participating in a clinical trial.
• My oldest daughter, son-in-law, and two grandchildren live in New York. What a joy to see them so often. 
• We had smooth travels this trip, which doesn’t usually happen. There were no delays, bad weather, or mechanical issues. 
• My youngest daughter and son-in-law kept our dog so we had no worries about his welfare while away from home. 
• We have lovely (free) accommodations (my daughter and son-in-law’s apartment.) 
• Clinical trial appointments went smoothly. Good blood work results, nice nurses, no long wait for injection. 
• I got to attend a book talk by Kate Bowler on her new book Joyful Anyway, facilitated by former Surgeon General Vivek Murthy. Several celebrity sightings at the event, and good company. 
• A beautiful walk to and lunch at the Brooklyn Botanic Garden. The cherry trees were in bloom!
• The highlight of the trip was going to Carnegie Hall to watch my granddaughter’s All-City High School Choir perform. On diagnosis day I asked the doctor if I would still be alive to attend, he answered, “Hopefully.” 
• Lots of fabulous meals at great restaurants, including my post treatment lunch at a vegan Indian food restaurant, a “famous” hamburger at Peter Lugar Steakhouse, and many Brooklyn eateries. 
• A Sunday brunch at City Winery to see a Beatles tribute band, Strawberry Fields, with my eleven year old grandson who knew all the words to every song and was rewarded guitar picks by the band members. The pure joy he experienced will carry me a long time. 
• Speaking of pure joy - we took my husband Rivian shopping. This is his current favorite automobile and he was like a kid in a candy store. 
• Watching the documentary, Come See Me In The Good Light with my daughter and husband. I’ve wanted to see this for quite some time, and was happy to have a safe space to watch it and cry over it with loved ones. 
• I had the luxury of time to read. I read an excellent biography on John Prine.
• My niece/goddaughter visited and made her famous guacamole to go with our Texas comfort food - tortilla soup. 
• Time with grandchildren just watching them live their normal lives. Gettin ready for school, eating meals, practicing music lessons, etc. 
• Returning home to find my youngest daughter and her friends planted flowers in my backyard flower pots. What a wonderful surprise. 

So many silver linings. They are there for everyone if you just look for them. Having brain cancer has taken so much away from me, but it has given me a new perspective on how to look for the good. There is so much. 

Scanxiety

Cancer Diary

Scanxiety

Scanxiety definition: the intense, often debilitating fear and anxiety cancer patients feel before, during, and after imaging tests (scans). This common, sometimes “universal” experience can cause sleeplessness, racing thoughts, and physical symptoms like nausea. It stems from fear of recurrence or the results, with symptoms sometimes starting weeks prior.

Scanxiety is REAL! 

I had my last scan on Friday the 13th of March. Not an auspicious date for good luck. If you’ve never had an MRI, let me enlighten you. First, NO METAL on your person - no jewelry, zippers, underwire bra, snaps, or buttons. Just trying to find the right clothes and shoes to wear to the scan (so you don’t have to strip down and wear a hospital gown) is stressful. 

Then you are placed in a tube that closes over you, pillows are shoved between your head/body and the tube walls to keep you immobile. Then the fun begins. Forty-five minutes of random loud noise. Typically you are offered earplugs or headphones with music to try to mask the sounds, but nothing can diminish the drone, beeps, clangs, and changing patterns of noise. Halfway through the scan a dye is injected into an I.V. that was “hopefully” successfully placed in your arm before the scan started. Last scan it took five pokes and three nurses to successfully place the I.V. 

Within  a few hours of the scan a message pops up in your patient portal letting you know that you have new test results. Opening the results is useless, because I’m not a trained medical professional and have no idea what the thousands, yes thousands, of pictures of my brain mean. There is a summary written by a trained medical professional, but that doesn’t help. It is written in a medical jargon that the average person cannot understand. Although you can pick out a few words that you understand. Words like tumor, growth, abnormality. I have learned to send the report to my daughter (who is a “semi-trained” medical professional because she has seen every episode of the television show E.R.), who puts it into an AI program to decipher into layman’s terms. No matter what AI tells us, I still have to wait a few days for my oncologist’s appointment to really understand the ramifications of the report. 

My Friday the 13th scan has been reviewed by my radiation oncologist, my main oncologist, and my clinical trial oncologist, Next week I will see the neurologist who consults with my brain surgeon. At this point the consensus is that there is a sesame seed size growth, we will do a short interval MRI in May, and then present to the tumor board for recommendation. So now I get to experience scanxiety awaiting the scan in May. 

In the meantime, I start another round of chemo, travel to New York University Langone Hospital for another clinical trial injection, and wait. I try to pretend life is normal, but that is difficult. I’m grateful for being as healthy as I am, in spite of a terminal diagnosis. I walk 2-miles every day thanks to my friend Susan who won’t take no and just shows up and makes me do two laps at my local park. When she can’t take me, my husband Frank and dog Rocky take me to the park. I nap every afternoon, I eat well. I am thankful that I don’t have many side effects. Fatigue, a slight hand tremor, and vision loss are my biggest complaints. (Oh, and the whole losing my hair thing!) When I go to appointments at the cancer center and see other patients I realize just how fortunate I am and I do not take it for granted.

So, I wait. My next scan is May 12th. I’ll try not to freak out too much between now and then. Every little twinge, headache, or pain puts me into a scanxiey tailspin. Thank goodness my doctors had the foresight to put me on Prozac!