Unexpected, Unbelievable Good News!

When my diagnosis first became clear, and I met with a cadre of physicians - gynecological surgeon, radiation oncologist, oncologist - each assessed me from his perspective and then together, they crafted my treatment plan. After surgery and the pathology of my tumor was clear, the radiation oncologist and oncologist took over treatment planning.

So, throughout these past weeks, I've met with my radiation oncologist each week to discuss my progress and side effects. But this past monday, after three rounds of chemo, it was time to meet with my oncologist.

I went into the meeting with some trepidation. At the outset, he told me that he wanted me to complete four cycles of the chemo - six if I could tolerate them. And, he hinted that that might not even be enough - but he wanted to do some more reading, consulting with colleagues and examining the latest literature before making a final call. So, image my complete surprise, delight, relief and overwhelming joy at his news Monday that THIS WOULD BE MY LAST ROUND OF CHEMO!

So yes, if you are keeping track of my calendar, Tuesdays are chemo days and so I am OFFICIALLY DONE!

His decision stemmed from the most current literature on my rather unusual situation. You see, he told me, usually there is no radiation or chemo indicated for Stage 1B1 cervical tumors, BUT in my case, the cancer was a very rare and somewhat aggressive signet ring cell adnocarcinoma - and therefore it was collectively decided that it was very much in my best interest to endure this double whammy of chemo and radiation. In his research, four rounds of Cisplatin is pretty tolerable, but once you go beyond that patients start to experience permanent side effects, like hearing loss and neuropathy. He felt that the risk of continuing would outweigh the diminishing benefits, given four treatments is the standard.

So yesterday afternoon, I made it through my last chemo session, again with the help of some amazing and incredible nurses. Maddie, Amanda, April and others. As they were removing the catheter from my arm, 15 nurses came into my curtain with tambourines, blowing bubbles and cheering for me and presented me with this certificate:

Well... of course I cried. And then the nurses told me their rule - if you cry, you bring brownies. Guess I'd better get baking!!

I do however continue my radiation therapy sessions to completion - 28 total. As of today I have 12 left to complete!

It's Halftime

Living in a household of all boys, I'm pretty comfortable with sports analogies. And so, today I'll use one to declare that for me - it is HALFTIME.

Yesterday at 4 p.m. AZ time, I had my 14th radiation treatment, which marks exactly the halfway point. Earlier in the week (Tuesday) I had my third chemo treatment, also the halfway mark.

All in all, this has been a little better week than week two. In my pre-chemo blood work, we learned that my magnesium levels had dipped really low, and so I'm on oral supplements for that now. My nurses told me that could have contributed to the much more severe fatigue and nausea I felt last week. In any case, I'm trying to take each day as it comes, with no pre-conceived notions about whether its a good day or a bad day until I'm actually living it. And while I'm so excited to be halfway done, I'm also trying not to look too far ahead.

I am grateful for everyone's continued support! The emails, texts, cards, visits, phone calls and packages are so uplifting and so very appreciated. Two special gifts this week: a beautiful book on Paris from my dad, and a special package from a relative of mine who is using my dad's place in Texas. She found a knit blanket/shawl that my mother wore often and sent it to me (with my father's blessing) so that I could wrap myself in it and feel my mother's presence.

Today, I will leave you with this beautiful work by Rumi:

Don't run away from grief, o soul
Look for the remedy inside the pain.
because the rose came from the thorn
and the ruby came from a stone.

And now for the Men

Doing my morning reading today, I was immediately drawn to the headline "Cancer Gender Gap." It seems that word "Cancer" jumps out at me from all over the place these days, when in the past I may not have paid all that much attention to it.

In any case, a new study has found that 32 of the 35 types of the disease are more prevalent in men. I have to say this shocked me a bit because it seems that women's cancers seem so much more publicly discussed, probably because of the huge focus on breast cancer in particular.

The authors of this study suggest that gender differences could be explained in part by different exposures to environmental and behavioral factors such as smoking, occupation and alcohol consumption, but the majority of the gender gap probably results from key biological differences between males and females. "If we could find out what causes the male excess of cancer and somehow eliminate it, we could prevent roughly one-third of all cancer," said Dr. Ellen Chang, the study's senior author. One third!!

So men (and women who love them), you can't shirk your health responsibilities either! I implore you, too, to get your annual check ups, milestone preventative care procedures and - most of all - don't ignore changes in your body or how you feel.

For the Ladies

So, enough about me. Let's make today's post all about you, Ladies. I'm going to explain in more detail my situation as a way of imploring - begging - urging you to dutifully get your preventive care testing LIKE CLOCKWORK.

Some of you may have heard that the old guideline of annual pap smears has changed. Here's the straight scoop on the new guidelines from the National Cancer Institute:

According to the new ACOG guidelines, women aged 21 to 30 years should be screened every 2 years using either the standard Pap test or liquid-based cytology. Women 30 years and older who have had three consecutive negative (i.e., normal) cervical cytology test results may be screened once every 3 years with either screening test. 

So, I had had a string of normal pap smears, the most recent of which was a year and a half before I saw an OB/GYN in my new city in late September. I actually went because in my state you have to have a prescription from a physician to get a mammogram, and of course, being over 40, those are suggested to be conducted annually. It, too, had been a year and a half so I was getting nervous that I should get screened.

My mammogram was great - perfectly normal! But the first week of October I got a call from my OB/GYN's office saying that my pap was abnormal... and not just a little abnormal but VERY abnormal. They set an appointment for me to come back in two weeks later for a more invasive procedure to look at the cervix. A polyp was found, and a biopsy was taken. On October 31, waiting to board an airplane, I received a call from my doctor with the dreaded words "It's definitely cancer."

I had followed all the rules. Lived excessively healthily. No family risk of cancer. Zero symptoms. And yet had I waited the recommended 3 years between Pap Smears, I shudder to think what I might be facing now.

And of course, being the overachiever I am, it was not just a typical cervical cancer. Oh no. It was exceedingly rare. The tumor had the pathology of a digestive cancer - mostly likely colon - called signet ring cell adnocarcenoma. There were no estrogen or progesterone markers at all. And so, physicians began an very invasive hunt through my body to make sure that the cancer had not started somewhere else and already spread. They examined every millimeter of my esophagus, stomach, liver, pancreas, intestines, appendix, gall bladder, ovaries. In the end, thank God, it was a primary tumor in the cervix, Stage IBI, and at the end of this treatment plan I'm told I have a 90% chance I am completely cured.

One other note. cervical cancer can be largely eradicated through the widespread deployment of the HPV vaccine. I implore those of you with daughters to carefully examine the benefits of giving them this vaccine to prevent the most common and widespread risk factors for cervical cancer. For me, it would not have changed anything given the pathology of my tumor (non HPV-related) but anything you can do to help your girls avoid the absolute shock of receiving a cancer diagnosis and subsequently enduring a challenging treatment regimen is something to seriously consider.

So back to making this all about you. Please get your annual screenings. Endure more frequent pap smears if you possibly can. Don't miss a mammogram. Have a colonoscopy when you are 50. And listen to your body. You don't have to wait until these milestones if you are feeling like something isn't right.

As I went through several sedated procedures to get to diagnosis, the nurses preparing me had of course studied my chart and had a million questions. Did you have symptoms? Do you have family history? When did you last have your pap smear?  After told them the answers, every single one of them said to me,  'I'm calling my doctor to schedule an appointment today!!"  PLEASE do me a favor, and do the same!!

The New Normal

One of the biggest challenges I am facing during my double whammy of chemo and radiation therapy is my "new normal." Less than three months ago, I was healthy, active and busy with a to-do list a mile long. I got up at 5:30 each morning, had my morning coffee, read for an hour, showered, worked a full day, hiked if there was daylight, had dinner, watched TV or read and hit the pillow about 9:30 or 10:00.

My new normal is quite different. This second week post-chemo, I've been much slower to recover, especially from the nausea and fatigue. I need a couple of power naps during the day, and last night I went to bed at 8:30! Nothing sounds good to me - even my morning cup of coffee has been sacrificed because it only upsets my stomach. I was warned by the nurses to avoid my favorite foods while nauseous because my brain would trick me into thinking I don't like them any more. I worry because I have been consistently told that this regiment of treatment doesn't really follow a weekly "cycle" of ups and downs, but rather it is like a steep climb. Each week will get harder because of the cumulative effect. I wonder how someone older or less healthy than me can tolerate this!

Once again, the universe sent me a message just in time. I subscribe to a number of daily quotes and reflections, and late yesterday, this arrived in my in box: "He is able who thinks he is able." - Confucius

And so I will continue to place a tremendous amount of energy into believing that I am up to this challenge and that the end result of possibly being "cured" is just reward for this struggle.

Paris

As a high school student, I took four years of french. I was fascinated by the language, intrigued by the city, and determined to experience it for myself some day. The closest I've gotten is Montreal, Quebec, where I was the designated sign reader for my family. I wanted so badly to order a meal in french, to use what I had practiced so hard to master, and was devastated when the waitress said (in English), "What'll it be?"

I am a person who believes in signs. And so, as I watched the lovely movie "Hugo" about an orphaned boy living in the Paris train station, keeping the clocks running and working to fulfill what had been his father's dream, I was charmed all over again. I said to myself, "I'm going to live in Paris for a month one day."

Shortly after seeing Hugo, I started my radiation therapy. And there, lying on the table in the small area where I wait each day while they set up the room, there are not one but TWO magazines with stories on Paris. I read a little more in each of these every day. And I've taken this as a sign - a confirmation that indeed, I must find a way to see Paris one day.

What are you putting off? What are you dreaming of? Please don't wait until it's too late to do what you have always wanted to do!

It's time to check your filter

Let's start with the big stuff. TWO DOWN!! That means only four more chemo treatments to go. I am dutifully marking the days off of my calendar and it just feels soooo good.

Yesterday, as I reported for chemo, I got a huge chuckle out of my nurse Maddie. As she walked me back, she asked me my full name and birthday (I've repeated this information literally a thousand times over the last few months - every check in, every nurse, every time - more on this later) and then explained dryly that they really don't want any impostors getting in. As if! No way I'm gonna let some one else have this experience (heavy sarcasm)!

Sitting in the chair, IV in place, looking out at the mountains outside my window, it occurred to me just how extensively my viewpoint has changed as a result of this experience. It is strange to think that for weeks and months and years, other people, each with their own very important stories, have been sitting here facing the same thing as me and yet I never ever gave cancer, chemo, infusion, radiation, surgery, tumors, side effects - any of it, a second thought. Oh sure, I knew people who had cancer and were facing these things and I felt very empathetic and compassionate for them. But, like anything, until you actually EXPERIENCE it, it's really hard to know exactly what it all feels like.

So, I truly do see the world differently now. And its little things. The sense of gratitude for the smallest things (which I've written about before). The notion that what you see on the outside of someone is just that - what they look like. It isn't who they are, and chances are there are some wonderful and fascinating stories inside that person too. I've become very interested in learning about what I put in my body - and its ability to help me fight to health and keep me there. I've been reading a ton about spiritual realms and healing, archetypes and the sacred contract we each have in this life - our purpose. I am growing impatient to see more of the world and experience the mind-blowing impact of travel to new lands and cultures. And most of all, I am realizing how quickly we pass through this life. There isn't a moment to lose.

So at the risk of sounding preachy, I would offer you something to consider.

Be willing to open your mind (clean your filter) - in fact find things that are way outside your normal patterns and do them - read them - taste them - listen to them - see them, and do so with an open mind. Aristotle once said "It is the mark of an educated mind to be able to entertain a thought without accepting it." Even exposing yourself to these new things will open horizons for you beyond what you might have imagined. Of course, it has taken an extreme situation for me to find this truth - I would will the joy of it for all of you without the drama!

Ding! Ding! Round Two....

Like a fighter resting in his corner, I'm waiting to hear the bell to signal another round. It's Tuesday - chemo day - and I am desperately trying to get mentally prepared for the day ahead.

Last week I reported my relief at finally getting to the great unknown - what will chemo be like? How will I feel? How will it impact me? And now, the trick is I KNOW. I know that the nurse will be completely gowned and gloved to bring the bag with the chemo solution to protect herself from the poison should the bag break, but she capably hangs it on my IV stand and connects it to my infusion catheter and begins sending it into my body. I know that within about 15 minutes, I will taste the metal in my throat, feel it burning down my esophagus and it impacting my stomach by sending it into flips. I know that the infusion will take two hours from start to finish. And I know that the next few days I will be managing nausea, fatigue, lack of appetite and digestive issues.

But on the other hand, here's what else I know. I saw my surgeon yesterday for my 6-week post op visit. I got more emotional that I expected. The emotion was extreme gratitude for his skill, his compassion, his talent which may well have saved my life. (I hugged him - TWICE!) I know that this 6 weeks of chemo/radiation is a huge insurance policy against having to endure all of this again someday. I know that I am surrounded by family and friends who are so encouraging, so inspirational, so kind and compassionate that I am humbled beyond words. I know that it has been a tremendous gift to have my son Taylor here for the last 3 weeks, bringing me laughs, joy, and some wonderful distraction from how I'm feeling physically. And I know that this experience is challenging me to be a better person, to become laser focused about my purpose, to not put off what I want out of this life.

So, ring the bell. Let's get on with Round 2!

Take Nothing for Granted

During these past few months, I have learned many valuable lessons, but perhaps one of the most simple yet piercing is the notion of taking nothing for granted. Every day, we all move through our lives and spend precious little time thinking about how some of the most basic things make our life rich and pleasurable. Here's a few examples:

Do you ever stop to think about just how wonderful food tastes and what a gift that is? If you've had to fast for a few days because of medical tests, or you've been nauseous, there is a moment when something as simple as a blackberry or a warm piece of freshly toasted bread enters your mouth and tastes amazing. I'll never take the ability to savor food for granted again.

What about energy? Like most of you, I never even gave a thought to conserving my energy. I simply went where I wanted, when I wanted, as often as I wanted. I hiked, walked the dog, exercised, shopped, spent a night out on the town or cleaned the house without giving it a thought. I'll never again take for granted the ability for my body to have boundless energy at the ready for me to use.

Do you take the time to notice the beauty all around? Do you stop to breathe in the fresh air? Observe the cobalt blue sky? Hear the birds singing or the breeze rustling the trees? Admittedly, I was always in such a hurry that I didn't always appreciate the incredible beauty of the earth even right out side my front door. Now, the mountains that lay just beyond my house are a formidable reminder to me to stop and appreciate all of God's handiwork.

In no way do I mean to be preachy about this. I'm just saying that there is joy there for the taking if you're willing to look!

C is for Courage, not Cancer

So after all the anticipation of the first day of my treatments, I let the bottom fall out yesterday. I wasn't feeling very well physically, and then it occurred to me that this really was just the beginning. Not even mile one in marathon terms!

I allowed myself some tears, but then that old self talk kicked back in, reminding me that I am young, strong, courageous and have so much yet to do in this life.There are countries to see, mountains to climb, and most of all health care to FIX!

It certainly helps that hardly an hour passes without hearing from one of my friends or family members. It's like this whole brigade standing with me making sure when my knees buckle there's someone there to prop me back up and give me a little shove in the back. You know who you are! And you will never know just how much your relentless support of me has made the difference between this journey being impossible and bearable - and yes, even more than bearable because I am learning so very much! About myself, about the disease and how to live going forward, about what and who are important.

Aristotle said, "You will never do anything in this world without courage. It is the greatest quality of the mind next to honor." I am bound and determined not to be defined by Cancer, but rather my courage!

Calling all Angels

Yesterday finally arrived to my great relief. As a life-long planner, both personally but more so professionally, it has been my mission to understand everything that will go on, down to the minute, and to plan for every eventuality to make it - an event, a publication, a campaign, an announcement , a meeting, a trip or news conference - go flawlessly. Imagine my frustration when the most I could learn before starting this process is "everyone is different." So I feel a bit like I have been blindfolded and placed on a wild roller coaster with no sense of where its going and where it will end up. Not my favorite thing!

I started the day with a huge blood draw at the lab so all my levels could be checked pre-chemo. Next, on to radiation therapy. A few weeks ago, they performed my "simulation" so they could design the exact direction and dosage of the radiation. As part of that process, I received three small tattoos so that I could be consistently lined up in the same spot every time (28 times, to be exact). Laying on the table, there is a massive arm with a large round camera that swings 360 degrees around you. I felt nothing during the procedure (a blessing).

Then, an hour and a half wait for the chemo. The nurses there needed to check my labs before starting, and the lab has a two-hour turnaround time so my son Taylor and I, who went with me yesterday, found some lunch and hung out and read. (Sidenote: My husband Bill has been amazing. During November and my lengthy testing for the diagnosis and subsequent surgery, he has spent countless hours driving me to appointments, and sitting in waiting rooms and hospital rooms. In addition, Bill's wonderful father, Dick, passed away in mid-November with end-stage colon cancer. Bill also spent many hours with him during October, so it was nice for Taylor to be able to give him a little break before he goes back to college next week.)

As we sat in the waiting room waiting to be called for chemo, I told Taylor how much I missed my mom, Karen, during this chapter. I miss her every day, but even more so now, when her warm, loving touch and comforting words would be so effective. I also know (inside joke here for my sisters) she would tell me "This is character building" and "This, too shall pass.") Here's where the angels part comes in. A few minutes later, we were called back, and introduced to my two nurses: April and Karen (!).

Now I've really never been one who believes things like this are coincidences. It seems to me it was a very tangible way my mother was showing that though she is not on this earth, she is very much with me. That belief was only reinforced by the caring, compassionate demeanor of my two nurses. They took ample time to explain everything that was happening to me - what I would experience, and feel during the infusion. The drugs I would be receiving. The immediate side effects I would feel, and the ones to expect down the road. Suggestions to make things not so bad. These are they traits of angels among us.

If you are a nurse, there are not enough thanks in the world for what you do. And I have been incredibly blessed to have the most amazing nurses at every step in this process. Nursing is an increasingly difficult profession, but I want to affirm to all of them that they can make or break a patient's experience. Please don't ever lose sight of how important your work is, or how much your patients value your kindness and compassion, not to mention your amazing technical skills. You are, indeed, angels among us.

FEARLESS

Mind over matter.... mind over matter.... mind over matter. I have been working diligently to approach today with just the right attitude. I've tried to envision that the cancer-killing drugs and radiation I'll start today are actually purification agents, designed to purge my body of all things less than perfect - including thoughts, feelings, attitudes and past mistakes. I've imagined that at the end of these six weeks, I will have the gift of a clean slate - a new start, something that not everyone gets in life. I've told myself that the oldest child, perfectionist, achiever in me will do this BETTER THAN ANYONE HAS EVER DONE IT BEFORE!

Thanks to my sister-in-law Lori, I'll be sporting the necklace below. By no coincidence it arrived by UPS just minutes after the call in mid-December from my healthcare institution that outlined the rigorous schedule I would begin today (a 13-page itinerary with a total of 56 appointments between Jan. 3 and Feb. 9 including daily radiation therapy, weekly chemo, lab visits, physician visits, exams, etc.). It's actually a scrabble tile with the letter "U" on the back. Lori and I have endlessly played the notorious "Words with Friends"scrabble game (made uber famous by Alec Baldwin) throughout my diagnosis, surgery and recovery. So it was a special, meaningful and perfect gift symbolic of the army of supporters in my camp.

Needless to say as positive as I am trying to be the fact still remains that what I am facing is daunting and damn scary. And once in awhile I give myself just a tiny bit of permission to feel overwhelmed.

So, off I go on this new adventure. It's an opportunity to continue to experience from a patient's viewpoint what should be the world's greatest health care system - but continues to struggle and fall short in quality, safety, patient experience and cost control. My hope is to use this experience to influence what I can down the road in making it a better system for everyone.

No Man's Land

I fully admit that when the good Lord was handing out virtuous attributes, I somehow missed the patience line. For me, waiting - for answers, for action, for resolution, for anything - is the hardest part. And so I supposed it goes without saying that these three or four weeks of waiting to start my radiation and chemo treatments tomorrow has been one of the biggest challenges I've faced.

So this morning, as I write this, the next 28 hours feel like 28 years. I am so ready to start - because the sooner I start, the quicker I will finish. Thankfully, our son Taylor is here helping me pass the time. Thanks to his zest for life, he actually got me out of the house PAST MIDNIGHT on New Year's Eve! Here's a picture of us on the light rail going to a huge celebration down in Tempe:

Thankfully, we will also have a bevy of visitors during January and February (a benefit of living in Arizona when many of your friends/family live in much colder climates - they come visit!) and that, too, I am hopeful will help speed the time along.

Today's lesson is this: Always surround yourself with great people and make nurturing those relationships your greatest priority because in challenging situations, this becomes your rock. I have been humbled by the cards, flowers, emails, visits, calls, gifts and meals from my family and friends - and have even been contacted by friends I haven't spoken with in years. Make a vow that in 2012 you will reconnect - or connect more deeply - with people who make you happy!

 Welcome 2012!

A Little Music, Please!

I love music. I'm one of those people who lives their life to a soundtrack. During the two weeks of intense testing to arrive at my diagnosis, I relied on Mozart while I waited for what seemed like years for my endoscopy and colonoscopy procedures to begin, and during the two lengthy MRIs I experienced. Being claustrophobic, music was the only way to get me through the nearly two hours I spent in that tiny, confining tube.

I've done so much reading lately about the mind/body connection and the power of positive, happy thoughts in healing. Those patients who take control, who fight like hell and who have hope and positivity seem to do better in every respect - managing side effects, healing and in ultimately becoming cancer free.

And so it seems only natural that I should hunt through my music library to find the most empowering songs in my collection and put them into my playlist for my first chemo and radiation sessions. I'm gonna show those cancer cells who is boss! Here's the list so far:

Strip Me by Natasha Bedingfield
Skyscraper  by Demi Lovato
Born This Way by Lady GaGa
SuperGirl by Saving Jane
Know Your Enemy by Green Day
Brave by Nichole Nordeman
Be OK by Ingrid Michelson
Heal Yourself by Ruthie Foster
Hit me with your Best Shot by Pat Benatar
I Dare You by Shinedown
Bulletproof by La Roux
Survivor / I Will Survive by the Glee Cast
It's Amazing by Jem
Darlin' Do Not Fear  by Brett Dennen

These titles are really for anyone who wants to move their mood to a place of power, control and positivity, so I invite you to sample from my list!