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

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

 

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

Round 8 November 4th - alone and it was a good thing

I have worked out the schedule for chemo so that I have the good company of my posse.  All the remaining days are covered - last one December 29th!   This one, I was on my own.  

Michael is working - very hard for the benefit of two households.  I could do this - I can do this. I recovered even after the bit of a crash from round 7 and spent my good week sorting through the next stages of my life and cuddling up.  I was ready to go - and I needed to vote also!

Tuesday November 4th - a day for history for all.  We the people made an amazing choice - we put a very courageous man and family in the White House.  Congratulations to President Obama! Yes we can!  

Chemo went as it always does, as it always will go.  Thank you Mark A for taking care of me on Wednesday afternoon.  I am up and typing already - just two days later.

More important, is to acknowledge that the big picture of life is moving right along.  Joe and Amelia voted today!  A new generation of influence is upon us and may we heed their youthful wisdom.  May Amelia heed the wisdom of those who have come before her as William Smith celebrates 100 years of education this weekend and she joyfully celebrates with Joe.  May we all try, try very hard to be kind, patient and thoughtful with ourselves and one another - we are in for a long road of good change.  

Three things to be grateful for:

1. Democracy

2. The right to vote

3. The privilege to participate in my government

xoxoxo

Jen

Success from a rally of loved ones and Yes, round 7 over!

For the past week I have experienced the joys and profound meanings of friendship and community, sorrow and grief, and fear - the kind that slaps you when you have a revelation of how much of life is beyond your control. I usually write 3 things to be grateful for - this week it feels like so much more.

A week ago my friends and family helped me put together a benefit. We hit it out of the park raising in total just over $12,000 in one night after just 3 weeks organizing! During the event all I hoped for was that people celebrate, celebrate and celebrate life some more...and they did. The Hugh Pool Band played until 11:00, I got to jump for joy when helping my mom, Amelia and Richie award the raffle and silent auction prizes and most important - that which I am soooo soooo grateful for, is seeing a room full of people who have helped raise me to be the woman I am. I am so lucky to have lived in such an amazing community, surrounded by so many wonderful and giving people. As I looked out over the restaurant at Teddy's and saw Amelia's preschool teachers from the Y, the Thompson's and all the soccer parents, folks who I have worked with over the last 18 years, community organizing colleagues, and my family and friends who have become family - I wondered how did this happen? Maybe this comes when you stop running. Over 20 years ago I fell in love with my life in Greenpoint and Williamsburg. I have tried to let the days that all of you have shared with me teach me to be - to be a mom, a friend, a daughter, a community participant and a woman. I am so thankful for all the lessons!

Then the revelation sweeps by - like a fog coming over the docks and reminds me I could easily sleek back in fear. I won't lie and say that I am not scared...I am terrified some moments and for many reasons this week has been particularly tough. My sister stayed for round 7 and we made it! I said good-bye to my mom after having her here to hold my hand through the last 4 treatments. It broke my heart and warmed me all at the same time. She came when I needed her - and now I have strength and more wisdom. I also have a different understanding of this woman - I love you mom.

My father died. Some of you knew and to others this will be another surprise. I did not speak often of my dad as we were far from one another in spirit and physical distance. I got the call the week before the benefit and struggled with what to do. I missed my chemo for the week and let my brothers and other family members tend to my dad's belongings. What happens in a moment can change all our familiar emotional navigation. It can change who we know and who we don't.

How tricky life is to fool us that it stays consistent. Then we breath and find that it really is ...loved ones die, people get sick with diseases that are frightening and friends and family rally....it all happens if we let it and then it moves on for the next unexpected sometimes joyful and glorious moments - that is what we can all expect.

Over the years I have witnessed your love of community and support to others....then it happened for me. How do I acknowledge this gift - what words say how deep this warmth runs? Felice, Glen and Lee - all the team at Teddy's, all the patrons, Hugh and Jane, R.C and Richie and a restaurant full of love...I recently read Elizabeth Gilbert's Eat, Pray, Love and I think she said what I am hoping my heart conveys to you all.

"In the end, though, maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it's wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices". I thank you all now and forever...

Love,

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

Cancer brings good things too! Round 3 Chemo August 19th

You have got to be kidding! I know that is what you're thinking. What good could possibly come from this?

Ah so much! Sad and true that when my life became threatened I changed, or at least I would like to think I am so much more grateful. That is a gift.

We have all heard about this. Recovered alcoholics thank their alcoholism for a better life. People who survive a near death accident suddenly leave jobs they have had for years only to start a new. Cancer is humbling and my mom came to take care of me.

Michael's mom Barbara and son Clayton had been visiting. Michael's son was going home now after a week and having driven back up with his dad. It was August 19th. I was going in for my third round of chemotherapy and Michael's mom was generous of spirit and taking care of me. Oh this seems light years ago, and the drugs I take to get me through each time take not only the edge off but the whole 3 days become a blur.  I feel I lose so much.

I remember Barbara sitting with me while I listened on my ipod to the meditation she had given me to help me focus when at chemotherapy. Days before, while on the beach over the weekend huddled under the umbrella, Barbara soothed my lingering pain with acupressure on the back of my neck. I thought of that comforting feeling when I was home with the pump on as Michael was leaving to take Clayton to the airport that evening - Amelia was here and my mom was coming tomorrow.

My mom had come right after my surgery and then went back to Mexico where she has lived for the past four years. I knew she had wanted to come back and was making plans. One day she called and asked, "How would I feel if she came for a longer period of time - say a couple months"? Oh how brave she was being. There had been so much history and lots of reasons for her to wonder if I would want her by my side. I immediately thought - please come, I need you. I spoke these words out loud and we both cried. She would be here on August 20th and stay until October 19th. Michael and Amelia picked her up at the airport and she watched me twist and turn with discomfort through my third treatment. From the bed to the cool tiles of the bathroom floor. Please take this shit off of me. I often cry and think this by the third day just before I have the pump disconnected. I don't fool myself and know that this is hard on us all...and my mom wipes my tears and tells me she loves me and all will be alright. Even if it won't these are soothing words that when spoken by a mom to her child, even when they are all grown up, is suave that can not be purchased or bottled...this is a suave of the heart.

Three things to be grateful for:

1) modern day transportation - airlines can bring your loved ones just when needed

2) Boyfriend's family - Jeff, Adrianne, Lola, Blake, Clayton and Barbara have loved me as much as my own family

3) Mothers and daughters - my own mom and the gratefulness I have for my daughter showing me how to be a loving mom.

All my love,
Jen

Second part of round 2 Chemo - recovered by August 12th

Hi - a solemn hi,

This sucks! Had to have the port repaired on August 6th in the morning and then my lovely friend Debbie G took me over for the completion of my Monday chemo - thanks Deb.

O.k, finally rebounding a bit. I got back my results for the genetic testing - all family members can sigh a big relief as this does not look to be a predisposition of gene growth! Yeah! Val congrats on your clean colon - Kel is next and all the cousins need to still go!

As of yesterday I was ready to hang up this chemo thing! I feel like I am in a fight with the Terminator and he is winning - damn him all to hell! Today I had the most amazing conversation with my health insurance company - Oxford Freedom has a nurse and a social worker for me. They both were so available and understanding and pointing me in directions that are making me feel more optimistic and that I can get to my next treatment....chemo is not for the faint of heart and soul! I am going to Gilda's Club on Thursday and reaching out to CancerCare for more support. Michael has arrived and so there is nothing like love to heal the soul! Having his arms wrapped around me is a blanket that nothing else feels like and so now for the big three grateful's

1) Love - to have a grown up true love compares to nothing.

2) Friends that have set an example of how to grow that love - Patty and Richard, Joanne and Richard, Debra and Steve, Felice and Glen, Shelly and Mark.  I am grateful for the joy and humor I have had in watching relationships that last lifetimes - and don't think I am not aware of how fragile and the work I see you all put into them.....

3) Courage is not what you do when not afraid, but steps we all take when the dark comes and we need faith to move us forward when we are walking a solemn path.

Next treatment next week - Wednesday and mom will be here to hold me and help me heal - I am lucky.

I will be in touch - thank you all for all the support! Patty and Shelly and Dawn - Bill Lowrey were all my angels and saviors last week! I could not do this without you and I am so damn lucky to have the most amazing friends!

All my love!

Jen

First chemo July 22 - friends and family note

Hi guys....Shit this is tough! All my optimism and praying went straight out the window after chemo last Monday and I found my ass laid out - or better yet sleeping in the bath tub Tuesday night. I also have to send a big thank you to the Cruz family as Dawn held my head and rubbed my back on Tuesday night while not even saliva would remain down in my system! God help me please and that is not a slight begging and pleading either!

I also learned how important staying in contact with the chemo nurse is - her name is Pat! Super Cancer Girl cannot go it alone! So after much re-hydration on Wednesday early AM and the removal of the 5 FU (emergency rush in at chemo central with nurse Pat) - and many many anti nausea drugs, angel Patty took me under her nook and loved me back to health! Then a big shout out to my burg pal Liz who came over with the first season of the Muppets, Top Ramon noodles and more liquids than stocked at Costco!  Joe (Amelia's boyfriend) stayed over to babysit Thursday night and finally a little french toast and fruit stayed down on Friday morning! Remember three things to be thankful - well that day one was french toast!  Oh and that Quiche - well let's just say eggs, cheese and pie crust are not favorite food flavors now and may never be again!

Val arrived Friday for the second angel swoop in and nurtured me with hugs, kisses, picnics and I got to swim laps in the big Astoria Olympic outdoor pool Saturday. Debbie G joined us and we had great laughs and all looked very sexy in our bikinis - the 40+ trio. The steroids for nausea kicked in and you would have thought my binge eating disorders had come back - excuse me sir could I have your baked potato right off your plate! We ate crepes and drank a beer with fries! It was more than what any doctor could have known to prescribe!

Sunday Val leaves after yet another wonderful day of togetherness (oh how I love my sister) Kel you toooo! And then we begin the 2nd colon cleansing - MoviPrep for Monday AM colonoscopy. What the hell is with that name! The whole process did not go so well and the vomiting started - emergency call to the doc and we end up going the old fashion route with over the counter Fleet products! TMI Uh!

O. k but here is the great news that you can all jump for joy - stand on your desks and sing the praises to the DNA, cell dividing universe "The rest of Jen's colon is clean and clear"! When I told Patty half sedated I cried me a river - a river of relief and thank you god for some good news! Something to be grateful for today - clean colon! Oh and the waffle and fruit I had 10 minutes later and was able to enjoy! So for this week the big push is work, last week was a bit of a set back.

The other is breath and enjoy, enjoy, enjoy life and be so grateful for all the love I have. Amelia comes home this weekend - YEAH and turns 18! Honey here is the biggest hug and kiss for you - smack! Her dad is taking her and Joe to Puerto Rico for her B-Day - WOWOOWOWOWO! I will be here holding down the fort with round two next Monday and my cancer possee all in place with lots of hydration and armed with new drugs to hopefully make all easier. Thanks for all the notes and support - Mom I can't wait to see you! Jo, I am coming to CT to drive you and Richard crazy in the pool for a weekend. See cancer let's you invite yourself to your friends country homes!

Oh - anyone interested in some inspiring reading check out http://www.crazysexycancer.com/ - my pal Stacy had it delivered to my door step this weekend and Val and I are now graduates of cancer college or at least enrolled. The young woman who wrote the book is amazing! See you Tuesday Stac!

Three things to be grateful for:

1) A great new GP and news of clean plumbing! This may be on the list everyday for a while!

2) A loving home to take an afternoon nap in after a hellish prior week

3) The best damn cancer posse a girl could dream of

4) an extra one - a mom who listens to you cry on the toilet when there is nothing left in you - literally

I am so grateful today for all of you! Hugs and kisses 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