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.”

Blazing Trails (and other metaphors).

Avastin and I have been BFF’s for a year and we started our second year together last month. My oncologist has no other patients in a long-term relationship with this drug. He says I’m a trail blazer. Not really how envisioned myself blazing trails but it’s nice to know I’m providing research in the name of science.

For the past four months, we have been monitoring my protein because it’s creeping into my urine. My kidney plumbing is confused. I say ‘plumbing’ because my creatinine level is still good.

24-hour urine collections are fun because you get a huge orange biohazard jug that you keep in the refrigerator during the collection period. As comical as I thought it would be for my co-workers to panic about ‘what the hell is in the refrigerator’,  I did not conduct my collections at work.

All three urinalysis showed an increase so my husband and I sat with my oncologist last week. Another metaphor my doctor used was ‘a rock and a hard place’ and I threw in ‘lesser of two evils’ (I thought it was some kind of metaphor throw down ). Since we are in ‘uncharted territory’, the lesser evil I chose was to take a break from my treatments. There were scary words spoken like nephrologist, kidney biopsy and dialysis. That’s when I want to stick my fingers in my ears and just ‘lalalalalalala’. So in a few months we’ll check my level and see how things have improved (I’m a glass-half-full girl).

I have to say that my body feels completely amazing. My joint pain, swelling and blood pressure have already gone down. I feel stronger than I have in a long time. I am thankful to have my body back.

Speaking of thankfulness, tomorrow is traditionally when we gather to celebrate the harvest bounty and reflect upon what we are thankful for. One day of reflection is not enough for me. Every day I am thankful that my life is full of loving friends and family. Every day I am thankful that my children are safe, happy, compassionate beings. Every day I am thankful to the man whom I share my highest highs and lowest lows with. Every day I am thankful. I am sending good vibes out through the universe; may they bounce into your heart.

a fence in my neighborhood

Loving Support.

When I received my cancer diagnosis, I didn’t immediately run to the nearest support group or therapist. But thankfully, there is no shortage of support in the cancer community. Art classes, Eastern medicine practices, fitness programs, massage – the resources are plentiful.

Then last spring my cancer had metastasized to my liver and it scared me.

I had met a couple of women who had told me about a local support center called WomenCARE in Santa Cruz County. A place for women (and their families) living with and living through cancer.

It was there I found ARM-in-ARM (women with Advanced, Recurrent or Metastatic cancer). These women have become part of my village. A place where we are brutally honest about our disease, gentle to one another and down right jovial. I am actually quite awkward with strangers and never thought I would be comfortable in ‘group therapy’. However, this feels more like coffee with friends who happened to all have cancer.

Many of the women have been in the group several years together, but there are two of us who are ‘newbies’. The others have shared stories of friends from the group of whom are no longer here, but how their presence and friendship is still felt and thought of.

Sadly, most recently, a firecracker of a woman is now gone from our tribe. Her memorial was beautiful and heart-wrenching. Her brother reminded us that she did not see her metastasis as a death sentence; she was an advocate for much including metastasized breast cancer. Every fiber of my being wants to scream “this is not fair”! She has clearly gone too soon but during her time here she had done so much for so many.

I believe, more than ever, that each today is not a gift for my unwrapping but the beauty is the gift I give.

Instead of anger I will give you honestly. Instead of bitterness I will give you wit. Instead of doubt I will give you hope. Instead of hate I will give you love.

 

Six is a magic number.

I have yet to meet someone battling cancer that does not become anxious before a scan. Whether you are past the magical five year marker or not, the three, six or twelve month scans seem to drive us to “What if?” The scan is the exam you’ve been cramming for and desperately want to ace. Every time.

My six month scan was last Friday. This time around I had a PET scan vs a CT scan. This means I get to be a little radioactive but without the Spider-sense development. After having to reassure my newbie technician that my IV port can in fact be used, I lie in a dark room for about 40 minutes building up the suspense. Then I take a ride in a tube for 30 minutes and we’re done.

My doctor tells there is still no metastatic evidence. Six months clean! They should give out chips or gold stars.

I have potentially nine more rounds of Avastin treatments but if I keep getting clean scans, I’ll open-wide and take my medicine.

Far too many people I know and millions more I do not, are living with cancer. We take the chemo, the radiation, the surgeries, the trails whatever will give us a fighting chance for more sunny days. My mortality gets pushed to the forefront before and after the scans. Whether the outcome is positive or negative, I just want to focus on what’s important to me right now. And what’s most important is the happiness I share with those I love. Little and big joys that give any pain and uncertainty clarity.

“What you do today is important because you are exchanging a day of your life for it.”IMG_3632

The Scoop on Poop (and Pee)

Warning: This will get messy with medical details.

In 2012, ten months after my radical hysterectomy due to cervical cancer, I was facing an unfamiliar surgery… a pelvic exenteration.

A pelvic exenteration is the removal of the vagina (I opted for no vaginal reconstruction), bladder, urethra, rectum and part of the colon. I was left with a colostomy (I call Ethel) and a urostomy (I call Fred).

Colostomy = An opening in the abdominal wall in which the end of the colon is brought through the opening to form a stoma. The stoma looks like the lining of your cheek. Unlike the anus, the stoma does not have a shut-off muscle so I cannot control when I go (or the sounds that emit from my stoma – yes, it farts).

Urostomy (Ileal conduit) = Uses a section of the bowel, surgically removed from the digestive tract and repositioned to serve as a conduit for urine from the ureters to a stoma. One end of the conduit attaches to the ureters and the other end to the, in my case, second stoma.

I have bags that attach to appliances (adhesive patches with plastic ring openings) that collect my waste. In the ostomy world, I am a ‘double bagger’.

It took several months to get used to my new life as an ostomate. My husband, an earthly healer, changed my appliances/bags for the first couple months. Getting the appliances to stick to your skin is something most ostomates struggle with. If it doesn’t stick, it’s a hot mess everywhere. My husband’s warm, healing hands held on the appliances for a few minutes, helped fuse the appliance (and made for lovely bonding during this challenging time). Now that I perform weekly changes myself, I resort to using a heating pad for about 10 minutes to adhere the appliances.

For earth-friendly folks like my husband and I, using all this plastic and non-biodegradable stuff motivates us to find alternatives. So far, we’ve found biodegradable colostomy liners that allow me to flush my poop so I use far less exterior bags. And with the drought we are experiencing here in California, I pee outside with the dog every chance I get. That’s right, I pee standing up.

In addition, finding information on ostomies and people with ostomies was not easy. I did find a very helpful, insightful blog, uncoverostomy.org. In a recent blog entry, Jessica talks about a Tosh.0 segment he did on a girl named Laura who posts YouTube videos about living with an ostomy.

I think the Tosh.0 segment was brilliant (lots of poop jokes, yes, but poop can be funny) and Laura’s videos are wonderful. I don’t think the average person even knows what an ostomy is and I like bringing enlightenment through humor.

Watch the Tosh.0 segment by clicking here. In the extended interview here, Laura mentions the difference between an ileostomy (hers) and a colostomy (mine) = watery output (ileostomy) vs. more ‘soft serve’ (colostomy).

That was a butt load of information I know. Hopefully, you have a better understanding of ostomies so the next time we are together and you think me rude for farting in your presence, you’ll know it’s just Ethel.

Goodbye 2013.

We are quick to make resolutions come January 1. Eat better, exercise more, reduce stress – but I like to think that most of us take care of our mind, body and soul each day without conflict.

I’ve decided to spent today reflecting on all that was great about my past year. I’ll start with My Top Ten Moments of 2013:

  • City trips to SF and Oakland with special friends
  • Relaying For Life with my favorite people on the planet
  • Numerous visits and parties with friends and family near and far
  • Starting this blog
  • Beach house days
  • Holding my son’s hand
  • Welcoming our beautiful niece Gia AND my dear friend’s baby Naomi
  • Spending three days in the Happiest Place On Earth with my Sydney
  • Relaxing in Maui with my husband

And the #1 moment of 2013… REMISSION! Kiss my ass, cancer.

The past three years have been ‘Hell In A Handbasket’ (literally gave my bladder and colon to the cause). Yet with every treatment, scan, surgery, poking & prodding, I remind myself that this bullshit is a pothole on my otherwise scenic life. And the potholes make me appreciate the beauty of my road.

I know each day will continue to bring joy and a pothole or two. So I am abundantly grateful to have love in my house; friends and family that mean more to me than they will ever know. May the New Year bring you all that is good and that your challenges keep you grateful and grounded.

I am ready for 2014.