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

Happy Anniversary to ME!

I am alive and well! Just last year about this time, say June 6, 2008 to be exact, I had the rug pulled a bit out from under me. Just a little stage 3 colon cancer, my lovely pup of a lifetime - Blackie, went to that big dog run in the sky and my father died in October. Oh, and Amelia went off to college, and I lost my job - holly cow! No don't think that for even a minute. Yeah, sometimes I think that for a few minutes and then....

You know there are hundreds of thousands of people who are in much more pain and having a far more tragic time than I have ever had - even with my worst years. I have never lived in a national war (maybe a little personal one), my daughter's health and journey has been nothing short of blessed - I am so grateful for her joy and freedom. My friends are always there for me (and I hope I am there for them), my family is trying to find its way back and I have opportunities abounding. I am alive!

You know it really is all in how you look at it. Like it rained for what has felt like 40 days and 40 nights, but see what it brought to my little fire escape garden for us.....Gerber daisies - thanks to Felice!

Three things to be grateful for:

1) rain

2) sunshine

3) color

For anyone who is having a hard time, in any way...my heart goes out to you and may you find peace.

xoxo

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

 

February and the results are in............

As of February 19th, for today, my body is cancer free and this is how I feel...be playful with your lives - Please! Be grateful for your World...

Keep checking back to see what happens next - many surprises!

Hugs and more hugs

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

East meets West documented in treatment #10 December 1st

Round #10 with just two more treatments to go and we are in the throws of the holidays....visitors, cooking, and chemotherapy.  Yikes....Michael is my knight in shinning armor and accompanied me to treatment this time and took care of me for my three days. Did I remember to say "Thank you"...

So as I had described in previous posts my dear friend David Greenhouse with Greenhouse

Holistic has been a guiding light for my alternative treatments including acupuncture.  My acupuncturist Myung-Jin threw no false punches when first interviewing me back in July. Acupuncture would not cure my cancer.  What acupuncture would do and has done for me throughout my treatment - was to aid me in managing pain as the chemotherapy drugs caused tremendous nerve pain in my ears and chest when breathing, manage nerve issues in my hands and feet and aid me in keeping my menstrual cycle regular. Often during chemotherapy neuropathy is quite common - a numbing sensation in the hands and feet as well as a complete loss of menstrual cycles.   My experience of neuropathy has been up and down - but I did retain my menstrual cycle throughout my course of treatment which my doctors found to be a bit mysterious. I attribute these successes to my acupuncture and a diet high in raw fresh juices, fruit and vegetables.  

The plastic tube in the pictures is the chemotherapy pump that I come home with for two days and then we disconnect from the port - so every other week my acupuncture treatments took place while I was having my chemo treatment.  At first I wondered if I would implode!

In addition to the physical health benefits the calming effects of the acupuncture aided in keeping a mental balance and a place where I went once a week that my practitioner not only new but expected me to have a very layered experience at this time in my life.  

My daughter's lovely boyfriend is building his portfolio and I needed a good photographer to record my treatments...photographs by Joe Cruz.

Three things to be grateful for:

1) Friends who are so giving - David and Michelle Greenhouse I can never thank you enough!

2) Mynug-Jin Chung my highly skilled acupuncturist

3) Joe Cruz...thank you for loving my daughter so sweetly and sharing yourself with us

Peace

Jen

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

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) 

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 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

June 5th - haha the jokes on you surgery postponed!

When you are having an emergency surgery you are often put on a wait slot for the OR.  I was called in early since a morning patient had not shown up.  Boy did I understand how that person was feeling - wasn't there another way!  So being the good patient we drove in 7:30 am, checked in at ambulatory surgery and began our wait. Now remember I had not eaten for two days prior - they asked me to eat light and focus on liquids and did that flush the night before. No liquids or water since midnight the night before.

By noon I was fading in and out of sleep - head in Michael's lap and listening to Joe and Amelia play cards. I was feeling pretty weak so I decided I should probably say something like, "hey I am going to faint over here".

I went to the counter and they sent me back into prep were a lovely nurse greeted me and took my blood pressure - oho it was way to low! They started me on fluids and postponed my surgery until tomorrow. I was checking into the hospital early and on fluids to bring my blood pressure back up. Dr. T came by and checked on me before I headed up stairs. He asked me "what happened"? I told him that all the other girls he was operating on kept me waiting - my crush on him was waining! 

Michael and Amelia headed home....I headed to sleep and into denial as much as was possible.

J

Surgery coming but we must prep first - clean the colon

We headed over to St Lukes / Roosevelt to check in on Wednesday June 4th for our preliminary blood test and the general check in before a big surgery. Holding hands with a loved one goes a long, long way when in this position - thank you Michael. Did I mention the importance of a health proxy! Moms, dads, friends without kids put one in place before you need it and the idea is not so frightening.

The hospital staff was great. I had a few minor interruptions. Organizing meetings via the ever reliable blackberry can keep one distracted...yeah I know turn that damn thing off, but work is a way to feel accomplishment when so little is in your control and contributing to some type of success is good for the synopsis in the brain. I did turn it off later....

We left the hospital in the afternoon to head up and see my darling daughter receive her end of the year awards - a senior heading off into the world! Oh I am such a proud mom! One for soccer and one for being a guidance counselor to her peers. Lucky...so blessed to have watched an extraordinary woman grow and take on her challenges with gusto and diligence - Amelia your mom loves you all the way to the moon and back down to the dirt!

O.k some of you have had a colonoscopy and I must say that the prep is absolutely horrible. Lime flavored salt solutions....sometimes I think we are so in the dark ages! My lovely sister explained that the body does not like an over load of salt, and when you drink 2 full 1/2 gallons of surgery prep for your colon a thorough flush is on its way -get prepared for a long night and a squeaky clean colon.

Check in for tomorrow - Dr T to fix me up!

J