The Other Girls Club.

I don’t think of cancer as a blessing and I don’t thank cancer for anything. I will however, thank Cervivor.

Cervivor came into my life when I was needing a connection to others like myself and searching for a way to give my cancer story a purpose. Cervical cancer is still not talked about enough so there is something incredibly powerful about meeting women who want to change the world’s view of our ‘down there’ cancer. Cervivors proudly wear teal & white as we share our newfound knowledge about cervical cancer and HPV. We want to change perceptions, change state policies and show the importance of making cervical cancer research a top priority.

Before Cervivor, I had no idea January was Cervical Cancer Awareness Month (CCAM). Now I think about the 13,000 women in the U.S. alone who will be diagnosed with cervical cancer this year. These are women from all walks of life, women who may have different beliefs and hardships but we are now part of a ‘club’ – one that’s all about our vajayjays, our coochies and not about our boobies. We’re a ‘below-the-belt’ cancer that was once the most common cancer death in American women. But we now have the Pap test that looks for abnormal cells on your cervix and the HPV test that looks for high-risk HPV that can cause abnormal cells. Keeping on schedule with these tests and having your annual well-woman exam has decreased cervical cancer death rates.

However, I also think about the 4,000 women who will still die from this disease this year. They will die too soon. Some will die fighting to make a difference. I am angry that we have to fight so hard and I am tired of watching strong women suffer. But what keeps me motivated is knowing that the next generation, my two young, fierce nieces will never have to hear the words “you have cervical cancer”. They will be two less. Future generations of girls will no longer have to face losing their fertility, having organs removed from their bodies or having to endure radiation and chemotherapy. We can prevent HPV related cancers. Think about it, we have prevented diseases like polio and small pox over the past decades, and in my lifetime we now have a cancer prevention vaccine.

As CCAM comes to an end, I will continue to share my Cervivor sister’s stories, along with my own, in the hopes that people will understand this disease better and be motivated to prevent it. I will be the change. I will make my story count and I will live my life with purpose.

 

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

Holiday Cheer. Ra.

I pitch my tent in the holiday happy camp (I am married to Mr. Xmas). I love decorated trees, holiday lights, festive music and the good cheer that really can be found within our fellow (wo)man.

I must admit that over the decades, I haven’t always been ho, ho, ho happy. Holiday magic  can be hard to embrace when you are alone or struggling with health issues. Or it simply brings up crappy childhood memories. Stress and anger used to override my joy quickly.

Now I try to pass on a little cheer where ever I go. Make someone laugh in a long line at the craft store, play a holiday song from my iPhone for the Fed Ex store employee who was ‘dying for a radio’ or just smiling at a stranger. I’ve received nothing but kindness in return.

Physically feeling good helps keep me joyous and I am very grateful. My every three-week Avastin drip has side effects that are manageable for me. Sinus pain/drip and some joint swelling/pain but not enough to keep me from a little yoga and walking.

Mr. Christmas and I are decking our halls and preparing the festivities. I hope all in my amazing village can embrace the good this year. I am holding you closer than ever before and still loving those I can no longer hug. Happy Everything!CIMG0270

Living the dash.

Back to work. Working out (why did I start with a Bikram yoga class??). Not throwing up. Not being so tired I don’t leave my bed. Cooking dinner with my husband. Drinking some wine.

I prefer this daily life. You can call it ‘the grind’ but its heaven to me.

My first round of a solo flight of Avastin was a mere 30 minute infusion – I barely had time to admire the new PAMF Infusion Center. Remote controlled seat warmer and massage chair – I seriously wished my six hour sessions could have been here! Four days later I have only one side effect, dry nose. “Coke nose” as I unaffectionately call it.

My cancer has never been something I could feel. No pain. Nada. I will not label this a blessing or a curse, just a fact. It was the side effects from the chemo treatments that gave me ‘bad days’. And now that I wear the remission crown, will I be *more* anxious when my six month CT scan comes around in January? All I can say right now is ‘bring it on’. I want to hold on to that sentiment as long as I can.

Each person living with cancer is on a different journey. Even if you share the same cancer diagnosis, the cancer is different in every body. Because of this, cancer seems bigger than the word ‘disease’. Through my journey, I have met many people – some I know personally and some through blogs. I have sat beside their pain, I have peaked into their coping strategies and most of all I have head nodded to just about every word they have said or written. It’s a community that no one wishes they were a member of but grateful nonetheless.

Living the dash, the grind… we all just want to be here longer; to love, laugh, cry and witness the gifts.

“Life is what happens when you are busy making other plans” ~ John Lennon

Disneyland 2013

Another sunny day.

My CT scan results show ‘previous described hepatic lesions are no longer visualized. No suspicious osseous lesions.’ This means the chemo cocktail I’ve been on since April has done what it’s suppose to do and my oncologist has deemed me ‘in remission’. I have never heard these words before and let me tell you, it was music to my ears (I literally heard Jeff Buckley singing Hallelujah). I’ll take remission, thank you very much.

Given my reoccurrence and metastasis, my oncologist suggested I continue with Avastin (Bevacizumab) every three weeks. Since I like the idea of doing something instead of nothing, I’m signing up for this course of action. My life is joyous and I will do everything necessary for more days on this planet with the people I love.

I am hoping the Avastin will continue to give me minimal side effects as I return to work soon. Work stress seems laughable compared to fighting cancer so I got that going for me, which is nice. I do like having something ‘normal’ to do each day but I honestly know that work will always be work and that the time I spend outside of work is where I thrive.

From day one, I have been armed with love and healing energy from countless souls who pray, meditate, email and telepathically send messages of hope my way. No one could be more grateful for these acts beyond kindness. My heart is full, my soul enriched and my body is strong.

I have shared these words from an unknown (to me) cancer patient before but they are worth saying again… “Cancer may take my life but it will not take my day.” Hell yeah.

I'm sailing!

Cancer and the Internet

The Internet can be a scary place… Miley Cyrus discussions, beauty pageant contestants and cancer statistics.

HADROSAURUSCancer has been on this planet a long time. Early cancer descriptions were found on Egyptian papyrus and Hippocrates, “father of medicine”, has been credited with recognizing the difference between benign and malignant tumors. And one family of dinosaurs, the Hadrosaurus (a duck-billed herbivore cousin of T-Rex), had cancer.

But what does the Internet have to say about *my* cancer – cervical cancer:

  • The National Cancer Institute shows that in 2013, there were 12,340 new cases of cervical cancer and 4,030 deaths.
  • Cervical cancer tends to occur in midlife.
  • The American Cancer Society says that cervical cancer was once one of the most common causes of cancer deaths for American women but because of advancements in the Pap test, there was a 70% decline in deaths between 1955 and 1992. (What about the years after 1992??)

I am a huge advocate for gaining knowledge and the Internet can be a great tool. However, for a newly diagnosed cancer patient, it brought me fear and anxiety.

None of the information on the Internet has made my cancer disappear and none of it has made it stay. After living with cancer for two years, I focus my Internet searches to cancer blogs, You Tube videos on applying eyebrows and general cancer support in my area. And yes, cute animal videos and heart-warming stories of human kindness.