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

Jen's Blast Thursday Oct 16th

Thank you thank you thank you thank you thank you thank you thank you thank you to all who are helping organize and have made contributions to create such great success for this event - Felice, Glen, Steve, Teresa, Donna, Vicki, Jane and Hugh. Thank you thank you thank you to all the businesses and friends who have donated for the raffle and silent auction - your unquestioning generosity is profound to me. Thank you so much to all my friends, and most humbling to the people who only know us from the request of my friends, for donations that have been made and mailed even before the event has taken place.

I also want to thank Michael Hewitt who has been keeping Amelia and I afloat with his hard work. This is so not what we expected - what I expected as a mom and woman who has worked my whole life.

I don't have words enough for all of you....for a community that has been here for me for over 20 years. May I continue to be there for all of you in ways that you may need - please never hesitate to ask.

Warmest regards,
Jen

Portrait of love

Mom, Amelia and I by Stephen K. Schuster  www.stephenkschuster.com

Parents Weekend Hobart William Smith

Friday October 3, six hours up - what a ride!  Mom, me, Rick (Amelia's dad), Michael and Natasha (Amelia's sister) all embarked on the journey for parents weekend at Amelia's college - William Smith.

We started out a bit late - 3:00 in the afternoon from Brooklyn to New Jersey on a Friday afternoon - were we Crazy, yes!  We finally got out of New Jersey with all parties on board, and Rick as the pilot about 5:00, Yikes.  

How did we pass the time - well the regular play of games, license plate watching, complaining about traffic, sleeping and my mom's favorite - ghost stories with her creepy ghost being a frightening attractive man who comes out at night dressed to the nine with sneaky knives in his socks.  Yup that is mom's ghost!  Scary!!!  I on the other hand am most afraid of the "Blob".

Natasha found this all quite humorous.  

We finally arrive in Geneva at 12:00 midnight after picking up Amelia "lovey" for a sleep over at the hotel.  Hobart / Willam Smith was very generous and made us a family guest for the weekend and with all the circumstances we are so thankful.  Amelia we hope to be our first immediate family college graduate - her dad and I tasted school, but with raising a child and working full time we each had our hands full - or so it felt.

Our first day of the visit - Saturday started out with breakfast downtown Geneva and then off to see the Hobart /  William Smith debate team in action....it was fantastic and pleasing to see how Amelia's generation is aware of public issues and articulate about their perceptions.  We then went off to Wal-Mart for dorm room items leaving behind Amelia, Joe and Natasha on campus.  Slowly we all regroup for another excursion - first up to the studio department and meeting professors and then downtown for "second hand" stores - great finds, and then out to dinner.   A bit tired we all went to bed early say 10:00 PM.

Second and last day Sunday (short trip) breakfast early at the Jewish House - we all love lox and bagels!  And then back again to Wal-Mart for the "rug".  Keeping your child's feet warm in the dorm is a very important mommy need.  The color and texture is important to the college student...we found something great for both of us - oh how it takes time for mom's and daughters to find compromise.  Oh did I mention that letting go is sometimes difficult for mommy!  

Amelia loves school and is doing fantastic!  Amelia all grown up, and so nice for my mom to see a third generation in her family finding her way, and doing it with such grace.

I love you Lovey - mom

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

Let the sunshine - or the wine flow, maybe both!

I have great friends! Debbie G comes to swim with me on my good days. Shelly gave me a little knitted shark that I can carry with me and Mark picks me up from chemo. Stac comes to visit me and takes me for a manicure and pedicure. Vicki E checks on me after each treatment and then again in my good week. The Cruz family gives me secret pomegranate/papaya seed juice with magic powers. I get hugs and encouragement on any given day from Jen, Kat, Liz and Krista. I have a home away from home at Felice and Glen's home and Teddy's. I reconnect over a wonderful fall lunch with Deb and Steve. Mr. Lowery makes sure we have great NY entertainment while mom is in town. My neighbors Mark and Nancy offer me morning coffee and their ever watchful loving eyes, and my family is welcomed into Patty and Richard's home for much needed reprieve and fun. I am so fortunate...there are stories with each of these wonderful people.

Patty and Richard and I became friends through our kids. Our friendship is enduring. I am lucky that we have gone beyond our children to a place where we are friends because we would be friends even without our kids. Those can be rare introductions through the course of your child's life. As parents we meet so many new faces. Preschool play dates, elementary school PTA, middle school plays, fundraisers and high school. O.k high school is usually the cut off for parent introductions. I was so lucky over the years, and quick to recognize those I knew instinctively I could sit through drinks with - a weekend away or a holiday get together. They are very special couples and have in many ways become extended family when mine was not close by - I thank them all!

Patty, Richard and I (Amelia and Ry too) have had the great fortune of traveling together and surviving it with many happy memories! We have spent countless weekends cooking, singing and sipping great wine and sharing the tales of life. So when mom and Michael had reached the end of their ropes and the kids were off to college - the grown ups took the opportunity to get our groove on in the vineyards on the Long Island north shore. Patty and Richard have a beautiful home and are so generous to share it with their friends!

Mom and I . Michael, Patty and Mom tasting wine.

Not every week is a chemo week. It is so important to remember that life keeps going and that I must keep going with it - and my loved ones (friends) make it so much easier. I am a lucky woman!

All my love to my extended family - my friends...

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

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 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

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

Friday the 13th - shit!

Michael and Patty go with me to see Dr. T.  I am going to go by to see the first Oncologist with St Luke /Roosevelt who is just a few flights down from Dr. T. 

The oncologist shares and office with my gastric doctor and I am eager to hear what he has to say. I am more eager for Dr. T to take a look at my incision.  I check in with nurse Christine and she immediately tells be that Dr T. needs to take a look.  She pages him and I wait - Patty and Michael are with me and Christine has said that it looks like my incision will probably need to be lanced as it appears infected.  Oh how my motherly instincts serve me - but to be lanced!  This does not sound good.  Christine assures me that a local anaesthetic can be applied / injected - but we need to wait for Dr. T.

After much debate we all decide dropping down to the oncologist is probably not going to work out so we call his office and have to reschedule for either after my visit with Dr. T or at a later time....we wait for for Dr. T.

Dr. T finally arrives - the following is full of foul language and smell...be warned before reading on.  

Dr. T takes one look and then asks Michael and Patty to move to the waiting room just outside the office I am in.   Dr. T tells me to lay back and try to relax - he is going to need to lance my incision.  Christine takes my hand and tries to make me comfortable.  I ask about the anaesthetic - Dr. T says it is not going to help at this time and that he needs to proceed. I should envision a calming place, say the beach.  I think oh fuck I don't think so.  Remember that plastic that was poured into my incesion well that stuff has to come out first.  Shit - and that is just the beginning of the term shit.  

Now my incision and the surrounding area - all around my belly button is red and swollen. Image a surgical tool made of metal picking out the plastic poured in - then imagine me screaming bloody murder of SHIT and if you touch me one more fucking time I am going to pass out from pain.    The lancing had not even taken place yet - both Dr. T and I were growing more and more frustrated.  He trying to concentrate - Christine trying to calm me and me trying, really trying to endure what is more painful than birthing my daughter.

I take deep breaths and visualize the water, Dr. T makes the incision and then with his 6 foot frame of surely over 200 pounds presses down onto my stomach to a burst of infection that comes out with the foul stench of a port-a-potty.  I am screaming from pain and fear that my colon is now exposed - why did I not go back into the hospital for this?  Dr. T reassures me that this is a cleaner and better environment and all is almost over - just hang in there!  Dr T. continues to clean out the infection pouring water into the incision hole and then suctioning the liquid out.  I have closed my eyes and began begging for mercy.  My colon is not exposed.  Yes, the drama is wildly out of control.  

Slowly Dr. T then fills the wound with a bacterial healing gauze and gives me an antibotic perscription - when we are done Michael and Patty come to my rescue.  Christine helps me up and Dr. T tells me he will see me in his office on Sunday.  They are going to have a visiting nurse start next week and have my wound cleaned on a daily basis.  O.k he has redeemed himself by coming into the office to care for me on a Sunday, but really!

Remembering all of this I want to cry.  I have felt such an invasion, and my body trying so hard to recover.  Surgical infections after colon removal can often happen given the nature of the location.  Bacteria and waste - surgery and recovery.  

I have survived one more step.

3 things to be grateful for:

Michael and Patty

Christine

Dr. T (maybe I am a bit pissed at him still) 

Ester my savior June 12th

My dear friend Stacy brings aunt Ester and the ball of healing starts rolling.  

When I was in the hospital I took the initiative to get a list of in network doctors / oncologist and then asked my trusted lead resident, Dr Rosen on what he thought - he helped me look at the list and made a few suggestions.   

I decide I am going to approach this process as best I can and with the professional attitude that I have approached my career and raising Amelia - ask for the advice of others more versed in what I am doing (Ester to the rescue), do research and interview the potential candidates.

Ester took the list also in hand and made her suggestions.  She had also brought over the New Yorker Magazine list of top New York doctors - I was heading in the right direction.  The oncology group at St. Lukes Roosevelt is a top contender.  While in the hospital my gastric doctor suggests another Dr. with St. Luke / Roosevelt who I schedule and appointment with - I am to stop by his office on the 13th.  Ester also suggest New York Presbyterian - so does my own little Dr. House, Patty Disken Cahill who I would trust with my life any day.  She has nursed her daughter with infant diabetes for 18 years and she and her husband dear Richard want only the best for Ryan and that is a good enough reference for me - NY Pres is at the top of the list.

Ester, Stacy and I spend the afternoon talking.  Stacy has brought me a comfortable dress so I can move out of the pj look.  Amelia soon takes over the very cute dress later in the summer - life does get back to normal and this is all good.

My incision still feels a bit hot and the pain medication does not seem to be doing much - it hurts, signs that I know from being a mom there is an infection!

I am grateful to be seeing Dr T tomorrow.

Peace - J

Home and not so sweet June 11th

Taking pain killers and slowly finding my way around the house and in my head with my new diagnosis.  Michael is here and Amelia are playing nurses - they should be licensed for their diligent duty.  

I move from bed to the couch and trying to stay up to date with work and comrades via the web and email.  I am a bad patient.   I complain that I am struggling with sleep and have very bad night sweats.  I look up on the internet and find that night sweats can be accompanied with a diagnosis of cancer - shit does this mean they did not get it all out.  When do I start the next step in this journey - how do I begin.  I am going to meet with my friend Stacy and her aunt Ester who is a breast cancer survivor.  

My next appointment is Friday 13th with Dr. T which I did realize the date until now and think how appropriate - such bad luck that day!

Remember to be grateful:

I have Dr. T

I have Amelia and Michael, Stacy and Shelly

Mom is coming soon

June 10th going home

Finally my body is working again.  After colon cancer you can not leave the hospital until your colon - intestines demonstrate they are able to eliminate waste.  Ah and mine has made a demonstration worthy of letting me go home.  I can not say I will miss the hospital.  I have found a way to work with the nurses - and to understand the strain of their schedules.  The food in hospitals have not changed for decades - it is time to address the issue of health and nutrition.  I am appalled that a liquid diet still consists of jello, ginger-ale, apple juice along with beef bullion.  With so many other choices... a visit to Whole Foods by Michael only helped not hindered my health.  An orange, ginger tea and fresh lemon juice is what finally got my body working - simple real foods.

My incision feels a bit warm and I worry about infection - my surgeon is confident and Dr. T is sending me home.  I am ready - did I already say that.

Mark Albright is my knight in shining armor - he and Michael are breaking me out of this joint. 

June 9 Day 3 "What is tender and when we fall"...

I have known this recollection would be one of the most difficult.  

I woke and had resolve - I would shower today.  I needed to wash my hair, blow it dry, put on a clean gown and make my rounds.  Damn it I wanted out of here.  Michael was coming this morning as he had been every day since he came back to be here.  To be here...what had that meant?  Would he stay after my surgery?  Would he move back into my life?  Did I want him to?  I know I love this man.  He has a heart - generous with all he has even when to me it may seem so little.  Are we right for one another?  Too many questions and none which need to be answered today he would say.

He shows up and comes around the corner, he looks exhausted, but still says, "Hi honey".   I quickly and somewhat quietly respond, "Hi, I want to shower, please help me clean all of this off".  I don't know what "all of this off" really means.  I know that I feel sweat and grime, but there is more.  Fear, collapse, failure, where do I go from here - Michael takes my hand and tries to reach up around to lift me out of bed.  It hurts - I have to find my way myself, a position that I can manage so I scoot to the edge of the bed and try to pull myself up.   Go little cowgirl by your boot straps - that is how you are going to do this!  I can't...I can't do it alone and Michael reaches for my arm as I try to shuffle across the floor to the bathroom.  

He has gathered all my supplies and I am fragile - they have disconnected the IV so I can be in the water.  Naked, holding the bar in the stall I sit on the ledge inside and let the water, warm roll over me - begging to cleanse me and tears come too.  I will never be the same and I barely recognize myself in some ways.  I don't know what to trust.  Michael reaches in and helps me shampoo my hair - sshhh it will be o.k.  I look up and see his kindness and his fear.  

This is not what I, what we planned - such vulnerability.  

June 8th Day 2 post surgery "miracles in the making"

In my two days of being admitted to the hospital I am on my second roommate.  The first one was in need of surgery and did not want to have it - she seemed in much pain and with no family around.  I recall her groaning, discomfort and agitation - alone.  It was very distressing. Her doctor finally came in the morning of the 6th and had the second frank discussion with her and she went down to the operating room.  I never found out the outcome - they were kind enough to send a hospital social worker to speak with her first. 

On the 7th there was a new young woman in her place and she had family around.  

My new daily job is working on getting in and out of bed.  I was finding my stomach muscles are pinnacle to standing, sitting and even walking.  I had always been so busy thinking about how they looked I had taken for granted their purpose - to hold me up. 

After a short stint to the latrine I laid back and was settling in when someone poked their head around my curtain.  I did not recognize this doctor - he said he was on the surgical team, and then the chief resident came around the corner.  Dr. Rosen and his cohort wanted to check on my incisions - there was a bit of wonder in their eyes.  I was feeling a bit like a guinea pig - and fantasizing of being on Grey's Anatomy.   Shouldn't my team be a bit bigger than these two for follow up?

So they ask to have a look see and I said "sure".  Now I had not seen the results either mind you and am growing a bit curious about all of their curiosity.  They lifted my gown and removed the bandage to review the surgical incision.  I was a bit shocked to hear, "I can't believe he did it"! "That is amazing - yes really amazing".  Their two heads peering over my stomach area with a marveling look.  I am wondering "what the hell is so amazing"?    

Dr. Rosen let's me know that Dr. T has performed a first.  He has taken out the right side of my colon laprascopically through one incision at my navel.  I am a bit nervous.  Having not volunteered for any firsts in surgical procedures I am hoping that whatever needed to come out was able to make it out through what seems like a small passage way.  I let Dr. Rosen know I am a bit concerned.  He reassures me.   I ask when will I be seeing Dr. T and also when would I be talking to an Oncologist?  The hurry of healing and reassurance of the professionals was pounding in my head.

I looked down at my stomach area and it was warm and red - angry it seemed.  They had filled the surgical wound with a plastic adhesive, like filling a hole in the floor until it spills over the sides to seal it shut.  I wondered about this - didn't a wound need to breath to heal?  Hospitals, I found are notoriously paranoid about the spread of disease.  Everywhere you look there are those hand sanitizing dispensers.  My daughter swears by those things.  Well I was sealed up and nothing was getting in - supposedly.

I laid back -  feeling a bit betrayed and failed by my body, or that I had failed her and now this was my big pay back.  I closed my eyes - I needed to not think like this, it would do neither one of us any good - my spirit or the body that houses it.

June 7th Day 1 post surgery "back to reality"

I was lucky my bed gave me a great view of the west side and the Hudson River.  I could sit in bed - propped up and let the spirit and energy of the City come in to my life and energize me.  I live in a city that refuses to give up....centuries have passed and in each decade within these centuries an extraordinary experiment has taken place.  People - nationalities and belief systems from all across the world come to reside here on this tiny island and her outer boroughs of Brooklyn, Queens, Staten Island, and the Bronx.  

In my 25 years of living in New York I have experienced one community breakdown - Gavin Cato and his death brought broken hearts and anguish within the Jewish and African American community which resulted in rioting and the death of 29 year old Yankel Rosenbaum. There was much blame across the cultural divides - some which are still healing. The neighborhoods have come back to life.  Jewish and African American communities are alive. The only other tragedy was an attach on America with NYC as the focal point.  September 11, 2001 and the twin towers came down with over 3,000 people who lost their lives and their loved ones.   

NYC has a pride of living and working in peace with people from every continent in spite of bigger global political pictures. 

When I look out the hospital window - weak and broken down I think of our City and how she is picking herself up as each one of us lifts our own spirits and strength.  That is what she is made up of - each one of us and what we give to her and then in return she gives back to us....how can you not love this City!

So I drag my legs over the side of the bed and breath through the pain.  I have been getting a bit of Morphine and Vicodin  - I had to ask for it based on a scale of 1 to 10.  I am learning the pain management in the hospital is very tricky and that one must be clever to advocate for oneself. Speak clearly, be thankful for your nurse and reaffirm to the staff that you are not a junky and have a strong tolerance for pain - but when it reaches the time for relief - relief is needed ASAP!  On the floor there are a number of folks always jocking for the nurses attention. Dropping thank you notes when you leave is very good hospital etiquette - they remember the patience who understand their plight too.  We are all in this together!

Finally I find the strength to get to the bathroom - I need to get these bodily functions working so I can get out of here and they are not making the fluids and jello so appealing.  Finally a bit of urine!  Yeah!  Then I am determine to take a little walk around - another way of helping get the body to function.  It is a short walk - but one the day after surgery.  I want to set the tone of who is going to be in charge of this recovery!  Me not pain, not cancer....so I head back to bed and put on a clean gown and take a nap.  Michael and Amelia will be showing up soon and I get a bit teary eye thinking of my daughter and how much she needs me and how little I can give her right now.  I try to give her humour and optimism.

They show up very shortly after I lay down with a few presents - yes that is good, sick moms need pick me ups!  There are flowers and my own "build-a- bear".  Her name is Champ and proceeds from her sales go to kids in recovery at hospitals.  I feel a bit vulnerable like a kid. Amelia and Michael put much attention into building "Champ"and she even comes with a voice recorded message of love from both of them so I can here their voices when I am alone.   I am lucky to be so loved and lucky that my daughter knows how to share the compassion she was taught all through her life....oh how lucky I am.

I love you both and the strength you give me - the strength this great city gives me and I am so ever grateful

Mom /Jen

June 6th Surgery - no more delays

I woke on June 6th feeling better - hydrated, but in the hospital still preparing for this surgery that I could not get my head around. How did I get here? What was it they were removing? I had a bad feeling and just kept thinking "stay positive" it is powerful! Yeah right, and in the next breath I thought of all the things I could have, should have done different in my life. It was that innately "bad person" that got me here...smoking, eating fatty foods, living unconscious to the concerns of others! Oh, I thought I had some power - please god let me have some.

I was to wait out the day until Doctor T. was available. Michael and Amelia had come back to keep me company - it is all a bit of a daze when I try to think back on this day. I don't want to remember to tell you the truth.

Finally, the time came and I was put on the gurney and taken down to surgery. Amelia braided my hair - I took it out, it made me feel like a little girl. I am the mom and grown woman and I needed to feel like that. We all waited patiently for Dr T. My anastigiologist team and I joked - I do this when I am scared. Then they said it was time to go. I remember kissing Amelia and Michael. I will be back. I love you both so much.

I remember nothing - I was under. Then I woke and know the first words out of my mouth were, "Is it cancer"? My surgeon looked at me and said "yes". I cried. Where was Michael? He was right there. Shelly and Mark came in. Just 30 days ago Shelly and I were joking when I first found the lump. I told her I had the strangest feeling I was going to be in the hospital and she had to promise me that she would not let people visit me without my teeth in. I had had oral surgery and a denture to replace teeth and was very very self conscious. None of this mattered any more. I wanted to hold my daughter and survive! Again, is there a god? Whatever is there please, please let me make it!

Amelia came in and the lead resident on the surgical team - Dr. Rosen and I told her together. I was a bumbling idiot. She held my hand and was trying so hard to be brave. I don't remember what happened next....

The next time I woke it was night and I was in so much pain.

I have so much to catch up on and the re-writing is taking time, especially with such an emotionally charge and frightening environment. I will fill in all the blanks, but want to keep you up to date. I hope you enjoy all the post surgery experience and strength and keep looking back to see how I got here and looking forward for all the time I spend living!

Peace and love
Jen