Support and Inspiration

CancerCare and Memorial Sloan-Kettering host The Nineteenth Annual Living with Cancer Conference to benefit people living with cancer, their families, friends, and health care professionals. Yes, I attended.

I sometimes am jealous of the people who can experience life peripherally. Things happen, they put them in a box up on the "life shelf" and that is it. I just dive into the deep end and find my way around. I think it is a compulsion for information, and the illusion that it brings safety. Maybe if I find out as much as I can I am better armed and more prepared. sometimes though too much information is not a good thing. In this case - the cancer case, I am still wading through and determining how much is too much. In this case maybe there is never too much information, help or compassion.

At the conference I made it through the first half, still recovering from the hernia surgery. By the time the workshops rolled around I was beat; crying through the survivors stories, scared and overwhelmed with detail from the update from the American Society of Clinical Oncology annual meeting. I was already pretty on top of the topics (some I need work on - maybe the "living beyond"). Click the link above to go to the conference page and see the offering.

In spite of my early departure I am glad I went. I still hate being a part of this club. I am grateful though - the people are extraordinary. The will to live and the priorities in peoples lives are so clear. And the cancer professionals are catching up with the disease. The cures are personal and treatments are being geared in that direction. No two cancers are alike - with each individual being looked at as the whole person with targeted therapies. Unconventional support is becoming mainstream in the ways of "live plant diets", yoga and meditation and even Reiki - all ideas that even just five years ago were marginalized.

I am looking forward to learning to better accept my membership and living with it for a very very long time.

xoxoxo

Jen

Picking Doctors...learn from my valuable lessons

When I found the lump on my right side just over a year ago I had a panic attach and went on the internet. Not good! It was a little shocking when I had asked one doctor, "hey feel this" and they said "no - can't feel anything"...I took their hand and said "FEEL THIS"! Their reply..."Oh that...maybe you should see your GYN"?!

What did I learn? Unless you are in the emergency room get a second opinion from a specialist always. I was lucky. The doctors I was referred to were fantastic - minus a couple hiccups. It never ever hurts to get a little more information though. I just had to have hernia surgery - a complication from my original surgery - a 12% risk of infection with colon surgery gives way to hernias.

I chose to have a new surgeon fix me up. I wanted to keep all my care in one spot and have an oncology surgeon this time around. I had moved over to NY Presbyterian Cornell/Weill for my oncology care at the Jay Monahan Center last year with my diagnosis. Going to a specialist - someone who performs that type of surgery or care over and over can give you the comfort that they know what to expect, what to see and when to use new techniques. Although it can be really, really scary in the midst of a crisis take a few days to ask questions...they may be questions that save your life and well worth the time.

Other item to consider when picking any doc...what kind of care are others getting? Do they take all types of health insurance? Do you have to wait long? Is the facility clean and friendly? For those who are strapped and think a private hospital or practice is out of reach - check on programs they may offer for those who are financially challenged. Are these doctors specialists, teaching, published and known in their fields? Are they respected? Start with your health insurance in network providers - it can save you thousands of dollars. If you really need and want to go out of network, again ask the facilities if there is charitable assistance to help with deductibles, medical co-pays and even drug coverage. Needing help is nothing to be ashamed of and it is available.

My experience with NY Pres has been wonderful. My doctors are smart and attentive leaders in their fields. The facility is beautiful, clean, friendly...all things we should not take for granted especially with the cost of health care - we really should come to expect great care.

Click on the title of this entry and you will go to the New York Magazine 2009 Best Doctors list and see how they choose them. We are our own best advocates. Don't be afraid of your health care - make it your right!

For those of you who want to know more about health care challenges and changes go to Obama's health care page and find a local group that can explain the changes proposed or host one of your own....we are so damn LUCKY we can question and create our government! Do not take it for granted - GET Involved!


Hugs,
Jen

Back In the Saddle....

I have been running, swimming, hiking, biking, yoga and all that jazz....most of my life.  Just a few years ago I was a little frustrated and decided I needed to push myself, so what did I do? What any other 5' 2" frustrated woman does...I joined Team In Training and did the NYC Ford Triathlon for the The Leukemia Lymphoma Society.  It was the most exhilarating 31 + mile experience.  I have never forgotten what I gained in each stage.  The .9 mile swim in the Hudson River was the hardest.  I am a swimmer, who went to the gym and put in her time.  I windsurfed, sailed...but was terrified of the loss of control and distance in open water.  I also had smoked on an off over the years - swimming a mile is no easy task...my lungs and heart were feeling the pain...would I make it?

  

I had to really believe I could carry myself through the unknown.  The 24 mile round trip bike up to the Bronx was a quite reprieve - a place to regain energy lost in the swim.  I congratulated myself on what I had accomplished so far and prepped for the end....6.2 miles over and into Central Park.  I had found my high and I was kicking on to the park course and I new I was going to be fine.  

I almost did not finish my training for that journey - friends and family kept saying I had nothing to prove and if I was too tired and the swim was too much that I could bow out....I couldn't.  There have been many tough fears over the years - and at times they have won.  I needed to know I could rely on myself.  I finished, exhausted and triumphant.  

I often meditated on those moments over the last year.  As I write this I wonder...was that experience guiding me for what was to come?  I was not able to swim through chemo because the drugs Folfox (5 FU and Oxaliplatin) - the Oxaliplatin caused unbelievable aching in my nerves in my ears and chest.  I ran on occasion and walked in my good weeks....

Because of the severe vomiting to a point of dehydration and pain I was perscribed a steroid, Ativan, Emend, Vicodin and a few others... I gained 20 pounds - all to get through 12 treatments over 6 months.   I resented the torture to my body, but I made it...it saved me and it was the hardest journey of my life.  I rewarded myself this past Sunday....

Running the More & Fitness Magazine 1/2 marathon with my dear friend Gloria Cruz!  The heat killed the event.  They had to close down the full marathon and cut the half marathon to a "fun run" for the safety of the athletes.  

We did it though!  Gloria and I clocked  7 Miles in 2 hours and 8 minutes.  I am so very proud of myself and my friend.  Gloria had nursed me and her husband through chemotherapy this past year...only to then loose her job and find that her mom is facing colon cancer as well.   Gloria is so deserving of this personal success and so much More...

Three Things to Be Grateful for:

1) A desire to Live

2) Friends to share challenges and triumphs with

3) The joy of accomplishment - it is food for the soul

xoxox

Jen

 

Keeping Track of Cancer

I have a lot to do in my life...one of my new responsibilities is to keep track and up to date on a slippery disease called "cancer".   When I interviewed oncologists, one told me something I will never forget..."This is not a fight, this is a very strategic process and you must act smart...be aware".  There are no guarantees, but I do this with the tools that a number of great organizations out there provide for the cancer community - see "connect with others" on this page.  Under organizations like CancerCare and The Lance Armstrong Foundation you can find information on specific areas of the disease that may be of help for your own individual journey.   Take advantage - these are truly dedicated organizations and are there to help!  

In the past month I have learnt new up-to-date information on Colon Cancer Health with over 1,000 individuals on the teleconference from around the world.  The content featured doctors and nutritionists from MD Anderson, Dana-Farber and the State University of Louisiana - serving as the largest teleconference call in the history of CancerCare.  I also participate in additional teleconferences offered through CancerCare on being a Survivor, am on the message board with the Colon Cancer Alliance and keep a up to date on how I can care for myself in general through exercise, nutrition and spiritual practices or "mental time outs".    You can also help others and make a contribution - I have highlighted both

 CancerCare and LIVESTRONG for your convenience....

From the Manifesto of The Lance Armstrong Foundation:

...."We believe in life.  Your life.  We belive in living every minute of it with every ounce of your being...and that you must not let cancer take control of it.  We believe in energy channeled and fierce.  We believe in focus: getting smart and living strong...Knowledge is power.  Attitude is everything...."

Gratefully,

Jen

March is Colon Cancer Awareness Month - Think Blue

Check out all the information - early detection is KEY!  Wear blue on Friday March 6th and schedule your favorite check up...talk with your doctor about early screening before 50!  Also please go to the Lance Armstrong Foundation to see all things about "Living Strong" as a cancer survivor.  

So now that I am living day to day - just like you (ok maybe with a little bit of awareness) there are many new endeavors and desires....

1) Bucking for "The Best Job in the World" - applying certainly has inspired the creative juices!  Click to see and oh i just had to...yeah, I know you only wish you had applied too!  

2) Exploring new career options near and dear to my heart - writing, business development, communications & inspiring others to do something "unforgettable".... see my LinkedIn

3) Going to hang out with Michael, Clayton and Amelia in Austin for a little warmth and SXSW

4) Training for the April 26th More Magazine 1/2 Marathon with Gloria Cruz - Go Girls!  I needed to do something just for myself - we all should.

5) Raising $2MM with my friends for the Northside Town Hall Community & Cultural Center

How are you spending your New Year?  I hope happy, healthy and believing!

xxoxoxoxo

Jen

Happy New Year! 2009 rings in New Beginnings....

Here is to new beginnings and the joy of celebration just hours after my last chemotherapy treatment for stage III colon cancer. Diagnosed 6 months ago - miles ago, what feels like years ago and then in reality was only days or and minutes ago. It took me some time to post all of this - just over 30 days. Each day it all sinks in a bit more, and each day my energy comes back and the anxiety finds a way out - in my steps out the front door and into my new life as a cancer survivor! It felt like a bad nightmare - was this real? I go mid February for my first PET scan and will take each one as it comes, every few months to help guide my next steps. Thank you to you all for your support and believing this day would come! Thank you thank you thank you....those are my three things to be grateful for - to be thankful!

Love,

Jen

December 29th - 31st Final Chemo treatment

This is going to be a photomontage of the last minutes of the last treatment of what I hope will be my last moments of cancer!  The next post will also be a montage of celebration that happened only hours after the pump came off...two sides to a wicked and hopeful coin.

Three things to be grateful for:

1) No more chemo

2) All my family and friends

3) The desire for no more cancer

Halfway there! Round 6 of Chemo complete - yeah!!!

Hi all...

Yesterday I became a television star - see me and my doctor speak on early detection for Colon Cancer on NY1.

In addition, friends and family have been busy helping organize a fabulously fun and needed fundraiser for my family. Cancer hits on so many levels we least expect - see the link to this exciting must attend fall event with raffle and silent auction at Jen's Blast. Kwiat diamonds will be donating a stunning piece, local art work and fun classes for your children at Kidsville - so keep looking back to see what comes up. If all of this is not enough to get you out then come for the great sounds of Hugh Pool, the most handsome blues / rock man in town.

So much to catch up up on and I am trying....I have left space below to fill you in with surprises of inspiration and fun - watching Amelia go off to Hobart William Smith and the joys of having a mom around in the most challenging of times!

But for now let's talk round 6 Chemo! The processes has gotten much easier with the help of many western drugs - gotta love that Vicodin and Adavan. The real kicker is the acupuncture! East meets West every week - starts on the first day of when my chemo pump is connected and continues for the next two days. I go again on the following week when I am recovering. My energy feels smoother and although I still find myself pretty weepy the second and third days of chemo - the pain has subsided so that I can stop sleeping on the bathroom floor...somehow the cool tile is just enough to numb the aching bones. Recovery for the good week seems to come more easily and I put myself into action for everything other than caner! My life is just going through a passage that will only enhance me as a human being - this I do believe. See my dear friend David Greenhouses' holistic center which is supplementing my health care needs with acupuncture. David and Myung-Jin Chung are giving me a great gift! Again the words thank you feel so minimal....call to find out more 718-599-3113 & 212-277-4406

I miss my swims - the nerve endings in my ears can't take the cool weather and water for now. I guess the triathlon is going to have to wait until first of next year. There is still morning runs and biking so anyone who wants to spend a fall weekend biking give me a ring!

A tip on good books to read - Eat, Pray, Love - a chick book with a message for us all to live from the heart! Get up and get going!

The Friday Night Knitting Club - o.k Shelly I finished it in spite of the ending and still find it triumphant and a good quick read...sometimes people touch us in ways that surprise us - Deb and Joanne I think of all I have learned from you and it keeps me going.

And now three things to be grateful for :

1) Community - I live in one of the best parts of American, voted in the Utne Reader over ten years ago, but for us who have lived here and built on the foundation of some very special old timers - Gigi we will miss you, we are all blessed

2) Friends and Family - maybe this is my big lesson....never be too grateful to those who touch your life whether for a moment or a lifetime

3) Hope and dreams - listen to your heart and be brave to do what is inspiring no matter how silly or frivolous

With my warmest thoughts to you all!

xoxoxo

Jen

Wikipedia - An oncology nurse is a specialized nurse who cares for cancer patients.

What does Wikipedia know? Does Wikipedia know that an oncology nurse at any moment may be caring for multiple patients, delivering a myriad of drugs, yet with the single focus and precious commitment they attend to you. Does Wikipedia know that when you first see your oncologist that the nurse will become your greatest advocate and mentor in your toughest journey. Does Wikipedia know that your oncologist nurse hurts when you hurt and laughs at your foibles and jumps for joy like no other at your successes - they watch you fight the fight of your life!

My oncology nurses, Pat and Nancy along with the whole support team at the Weill Cornell Medical Center / Jay Monahan Center at NY Presbyterian Hosptial hold my heart on my toughest days and deliver it back to me when I have strength....every patient should be as lucky as I am.

Love
Jen

Chemo 2 - Monday August 4th

Good evening all,

Just to let you know I am o.k - had to stop chemo yesterday as I have a leaking port. They instert the port under your skin as a temporay way to access your blood - very technical and is an "in and out" day surgery. So that damn thing under my skin that is serving as a main line for the pharmaceutical cartel is defective. Off to yet another surgery tomorrow AM - just a quick few hours to get a new one put in. Then back into the chair for my remains of the chemo and the lovely pouch I take home. I will keep you posted as I have many drugs this time around - steroids, Adavan, and special chemo triplets! So wish me luck and I will give you all the big heads up of how terrific all is going!

So the big three things to be thankful for:

1) Top of the list is the most amazing child I am blessed with who was most courageous and spent the whole day with her mom yesterday at doctor and hospital visits - had a quick rush to NY Pres to check on my faulty medical devices! Amelia is the stars and the moon and I can only thank the whole universe for just and amazing, amazing 17 year old (almost 18)

2) Faulty ports allow for extra day of a little shopping with my darling daughter who I have not spent much time with since she has been so busy wowing that crowd at William Smith and now off to Puerto Rico with dad for a family visit - lucky Joe gets to go! She deserves every bit of R&R - she wrote some amazing papers for her summer at college.

3) My William Smith Mom T-shirt that I now can wear to chemo and shout and brag about my darling daughter

Yup she gets all the grateful praises today - and there are no words that will ever tell her how much I love her!

Hugs to you all,

Jen

First Chemo July 21, 2009 "hope is key word"

Photo by Joe Cruz http://jpcphoto.blogspot.com

Hellooooo for chemo headquarters!

First day and Patty and I wowed the staff at NY Presbyterian. Patty a big public Thank You! Dr Ocean was wonderful - we arrived at 12:30 and left around 5:30. We started with a half hour discussion of how I was feeling, healing from surgery, a little bit about the nasty cancer. I told her I did not want to know more right now about the cancer - I wanted to focus on healing as I am not intending to be anything less than a defying statistic!

So I went shopping yesterday and have protein powder for fruit and yogurt shakes - being careful about not too much infusion of vitamins as it can be counter to the chemo. I am taking a vitamin D3 and can explore magnesium and calcium which can help the numbing and or tingling in my finger tips and toes. For right now we are just watching how I feel as I want to allow for the full effect of the drugs. I spoke with my pharmacist and she is also giving me info to read on anti oxidants for post chemo - one of her employees is a cancer survivor. Lillan at Chopin Chemist has been unbelievably helpful and is supporting me to go the traditional medicine route without judgment and helping my dietary and holistic habits for post chemo. I also am meeting with an acupuncturist - I want to see what they have to say. My doctor is also very on board with my explorations as long as I discuss anything with her first....she wants me to let the scientific medicine work also.

I get one drug for 4 hours intravenously through the port - which is just a plastic rubber item under my skin on the right side of my chest that has a tube going down towards by heart for direction into my blood stream from my heart. The port was put in last Monday surgically in an out patient visit to the hospital - went well. They prick me in the port with a needle and hook the IV up and I sit for 4 hours (worked on my resume, thank goodness for the laptop, and watch DVD with Patty today - DVD not sooo exciting). Then they take that IV connection off and change to a new drug, leaving the needle in. New drug is the 5FU and this one is connected and a rubber tube (like an extra long condom filled with the drug) is in a plastic case, which I carry around in a very ugly black fanny pack, and this pumps into my IV for 2 days. I learned today how to flush the port and remove the needle myself so I can disconnect this second drug myself and have FREEDOM! I have been playing nurse (not Ratchet) for my surgical spot for the last couple weeks and it is healing and closing up very nicely. Chemo is every two weeks - 12 sessions if no problems with side effects. I am going for my colonoscopy Monday July 28th with my new GP and gastro folks. They work with the team at NY Presb. Yeah for the opportunity to get poked up into my but with a camera and surgical tools! I can hardly wait!!! Wish I could go virtual on this one. A little nervous.....Oh, for my athletic and mental health I am gearing up for a triathlon - only 15 miles in total but I can do all the disciplines - swim, bike and run. All who want to join in we can be a team - I will leave you all in the dust!

I sent a letter to Amelia's school and they reviewed her financial aid package and offered her more funding - I am soooooo grateful. Amelia comes home on August 2 and Michael arrives August 10th. I have been able to see Val and Kel at the beach in Mass and spend weekends with Patty and Richard at their home. Dinners with Shelly and Deb keep me from feeling too alone and love through the universe with my dear friend Stacy and her aunt Ester. Everyone is helping with healing - the words thank you can not carry the weight your love has taken off of my shoulders. I am attaching a little surprise showing my new haircut - whacked off all my golden locks for a new more stylish peaceful warrior. Please send all cancer jokes -- we make much fun of this whole crazy experience and sometimes that laughter is just what the doctor order!

Ok last new trend and one I hold dear to my heart - 3 things to be grateful for daily. Sometimes as small as learning about Greek yogurt to health insurance and severance to carry me for a bit. So here are my 3 things to all of you for today:

1) Kiss and hug - with a friend, a lover, a stranger who might need a pick me up...I am so grateful for all I get from all of you

2) Cooking - fresh, healthy foods are good for the spirit and body. Tonight's dinner Jen's homemade quiche with broccoli, mushrooms (vitamin D), grape tomatoes, three cheeses - mozzarella, ricotta, cheddar with 6 eggs. Yummy and good for you!

3) Walks when a breeze is blowing - this is the wind of the universe talking to you about what is important! I love that sound through the trees when you walk on a quiet street on a warm summer afternoon.

Everyday these thoughts remind me of how good I have it!

Lots and lots of laughs and love,

Jen

Keeping an eye on healing - Monday June 16th stop in TLC

Dr T saw us on Sunday and cleaned the wound / incision again.  It still hurt like hell and I felt weak - but I am feeling slowly like myself and the wound swelling is down.   We are lucky he is so attentive. 

Monday is a big day - June 16th, back to Dr. T and Christine cleans my wound.  She is ordering the nurse and it will take a couple days so in the meantime I will be visiting Dr. T and Christine. 

Ursula will be my visiting nurse and she will come on Tuesday - we all hope.  Mom is coming on July 18th for a few days to see how I am fairing.  I have a couple appointments with oncologists and she will come with me for the first interviews.

I stop by Dr Dar's office - after seeing Christine.  My first assessment with an Oncologist.  He is a general Oncologist and I am concerned that I have a specialist for colon cancer and Dr. Dar is very understanding.   He suggests Dr. Kozuch, who was with St. Lukes / Roosevelt and is now with Beth Israel.  His specialty is colon cancer and his residency was with MD Anderson.  My appointment with Dr. Kozuch is June 20th.  My appointment with Dr. Cohen with St. Lukes / Roosevelt team is June 19th and Dr. Ocean of NY Pres / Jay Monahan Center.   The calendar is filling and so is my head with questions.  The more I know the more I question.

I stop by TLC -The Licensing Company to fill my employer in on my health and what is going to happen next.  I am scared of this conversation.  Michael comes with me.  I am fragile from the healing of the infection and my weight is down, but I am determined to show that I able to keep moving ahead.  

Angela and I have a private conversation - what am I thinking about doing?  How will I heal and the time I may need.  I am diagnosed with Colon Caner and will need to start chemotherapy - 12 rounds, one every two weeks after healing from surgery.  I am currently interviewing oncologist and will most likely start treatment in July.   My hope is to work on my good weeks, or they say I may be able to work all the way through.  Angela takes this all is and tells me to stay in touch over the next couple weeks - to focus on my healing.  I let her know I am coming into the office next week for a couple days.

It has been a long day and I am feeling the pressure of so much - close my eyes and rest! Michael takes me home after I have talked with each of my co-workers...it is a small office and everyone is worried.  They all give me hugs and well wishes and I am on my way home....

Tired and scared

Jen