Trials and Tribulations

Avastin and I broke up. We had a good ride but our ideas on a long-term relationship differed. Cancer was the bitch that got between us.

I’ve had nausea and dizziness for the past few weeks so I saw my general doc, my eye doc and had a brain scan. Brain is good and it’s not vertigo so let’s do a full PET scan! Low and behold, there are three masses, all about 1.5 to 2.0 cm and one pushing against my pancreas and bowel, giving me that lovely ‘morning sickness’ feeling and other unpleasantries.

There we were again talking about new options with my oncology team. I am very thankful for options but this sucks! My oncologist and radiologist were both very excited about a clinical trial for Nivolumab. She sounds pretty badass… a human programmed death receptor-1 blocking antibody. Nivolumab and I are going to get close, every two weeks close for 46 doses. I’ll get scans every eight weeks and if improvement isn’t seen, then I’ll jump on some targeted radiation. 22 of us will be in the study and since this is a second tiered trial, we all get the drug for free in the name of science. The side effects are very similar to Avastin, minus the chance of heart failure – so I got that going for me, which is nice.

And because life continues to move forward, we made two *huge* changes: we bought our dream home and sold a well-loved home. Selling a home is stressful but it actually became comical in our household. Picture two grown ups running around before an open house, hiding cat boxes, ‘staging’ rooms with the ‘good rugs’, shoving FOUR CATS into individual carriers (don’t forget the DOG!) and either driving around or drinking wine on our friend’s patio while the dogs circle the caged cats. I never want to sell a house again. I’m staying in this one forever… good thing I love it.

Life seems to be a series of good and bad. I keep thinking about a secondhand saying another cancer fighter said, “cancer may take my life, but it will not take my day”. Most days, cancer doesn’t exist in my world and other days the only thing that gets me through is my hatred for cancer. I love my sunny days, even the days I scream obscenities at the universe. Hope is still a household word that I find a great deal of comfort in. Each day I am hopeful, grateful, thankful and just full.

On the topic of feeling full (of love), as an American Cancer Society Hero of Hope, I had the great honor of sharing my story at several Relay For Life’s throughout the Bay Area this summer. Here’s me at the Relay For Life of Marnia — they were such a welcoming group. I tear-up with admiration every time I speak to Relayers, fighters. We all hate cancer and collectively we become a force for good.

HOPEology

I like the word hope. Yes, it’s used to push many agendas and sometimes it can feel unauthentic. But if the cause/event/moment is something you are passionate about then hope feels right and true.

My six month MRI showed nothing… No Evidence of Disease (N.E.D.)! There is always a rush of tears that follows the news, good or bad; the build up of tension and then the overwhelming release. More times than not over the past four years, the outcome has not been what I’ve wanted to hear. My oncologist has a strong belief that Avastin (and I have to agree) is the reason for my clean scans.

The decision to return to a once a month “maintenance” treatment after a four month break, gave me pause. I owe my oncologist and Avastin (and the researchers/funding who pushed to test this on other cancers after it failed in breast cancer trials) a well-deserved ‘thank you very much’ — but staying with chemo, like some relationships, is complicated. There are the immediate side effects which can be icky and worse, debilitating, at times. Then, there’s the possibility of creating a secondary cancer or other serious health issues. It’s not a decision anyone takes lightly. The bottom line is that we do what we have to to stay on this planet, with the people we love, for as long as we can. I am hopeful. Being hopeful feels better than being hopeless.

Since I’m on the topic of hope, let’s talk about Relay For Life. My first experience at Relay was so positive that it became the topic of my first blog entry. It was an incredibly hopeful event for me, connecting with other survivors and honoring my loved ones. My family & friends have celebrated with me each year and we have crazy fun.

Each year the American Cancer Society chooses Heroes of Hope from across the country to be a voice of hope. So how honored was I to have been chosen this year?! I get to share my story at Relays all over California to build cancer awareness. Screen Shot 2015-04-05 at 12.44.40 PM

Opening a dialog about cancer, certainly below-the-belt cancers, hasn’t always been socially accepted. We can finally talk about breasts, prostates and colons without fear of hushed giggles. But chatting about anal, cervical or ovarian cancers still makes some people uncomfortable. And we know that when people fear something, they are not motivated to make change. But cancer is cancer and its sole purpose is to kill. It starts a ragging fight inside our bodies and we throw medicine down its throat hoping to choke it to death. The thing is, we do survive every damn day we are here. So, yes, hope it what motivates me; the hope that I will continue to be on this planet to love, cry, scream and just be.

“Let’s talk about cancer, baby. Let’s talk about you and me.                                                                                                            Let’s talk about all the good things and the bad things that may be.”

What I Did This Summer (so far).

Remember when summer felt like it lasted for-ev-er? Languid days, riding bikes to the public swimming pool, staying all day (for a quarter!) with our sack lunches and sodas wrapped in foil (like that kept it cold?).

We didn’t go to camp, day or otherwise – we put on talent shows on our front lawns, we created homemade slip-and-slides, we chased down the ice cream truck and we played hide-and-seek once the sun went down. It was our neighborhood version of camp and it was the best. The days pasted slowly and we were always sad when Labor Day arrived because it signaled the last weekend of summer vacation. That’s right Millennials, schools across the country started in September.

Now we are grownups and summer time, unless you are an educator, does not mean automatic time off. We pack so much into our precious summer months that the days seem to fly by. Before you know it, you are bombarded by HalloweenThanksgivingChristmasChanukkah decorations in every store, all while you’re still wearing shorts and flip-flops!

I’ve spent the past two summers in the hospital, in treatment and recovering; not really memory-making stuff. However, what I did take away from these summers is that being surrounded by kind and loving people gave me the greatest joy and strength I never thought I had.

My healthy self is getting out this summer. Away trips, camping and straycations; concerts and lazy evenings on the patio will fill my days. I want this summer to last for-ev-er with moments big and small that remind me that life is truly beautiful.

So far, I’ve spent four lovely days in New York with my dear friend meriko. I stood in front of Monet’s Water Lillies at MOMA and was captivated by its enormity. We dined on amazing food and drink, danced on roof tops and attended a wedding at a venue straight out of your favorite summer camp movie. I have loved NY since we first met; she’s a fast-talking, glamorous lover who holds a special place in my heart.

On the heels of NY, was our town’s annual Fourth of July Parade. It’s a real Norman Rockwell Saturday Evening Post cover complete with dancing ladies, lumberjacks and 4-H clubs. This is our small town’s finest hour (it’s literally an hour long). We line the sidewalks on our “Main Street”, hippies and conservatives alike, feeling proud and gosh darn happy.

DSC_0082Once again our village came together for another Relay For Life event. We were a big-hearted team made up of long-lost cousins, wee-walkers and friends new & old. Pete & Tony served up delicious pork sliders that were an event favorite. Relay is like Burning Man, you take away what you give… and our tribe happily gave with their hearts. These people I call my village rock my world and I am eternally grateful for their generous, loving spirits.

Here’s to making more summer memories at home or elsewhere; with the people you love or on your own. I continue to be open to the gifts the universe sends my way and treasured memories have always followed. How will you fill your summer?

Relaying for a cause.

I participated in my first Relay for Life with some of my favorite people by my side. As a team, we raised over $10k and our Santa Cruz event exceed $140k. We had very generous donors; some who sadly know too well how cancer can take a loved one.

If you are unfamiliar with Relay for Life, it is the American Cancer Society’s fundraising movement. Relays take place across the U.S. (and in other countries) as local, community events. People come together with a common goal of seeing an end to cancer. And we walk for 24-hours because cancer never stops.

For me, the event held so much hope and love. I met breast cancer survivors, colon cancer survivors, ovarian survivors – all with their own stories of compassion, pain and hope. It was the first time I stood with my cancer not in fear but in strength; as if my cancer were something I could physically manifest, wrap in a tight ball and drop kick to the moon.

I have always been grateful to have a supportive, loving village who rally together when the need arises. Since my diagnoses two years ago, these truly loving souls have showered me with love and kindness. It’s hard to be angry when you’re surrounded by so much goodness. Even though cancer is a bitch, I refuse to be one.

Relay for Life

Relay for Life – Carol’s Cancer Avengers