Fearless Blog

Tomorrow marks 4 weeks since my surgery.  In some ways it feels like it was yesterday and in other ways it feels like a long time ago.  I am slowly but surely getting better.  Recovery has been a lot tougher this time around.  The good news is that I got off my painkillers and am now only taking Tylenol for the incision pain.  I find that my surgical pain is very manageable now (a “2” or “3” on a scale of 1-10).
The much bigger issue is my digestive pain.  I am still eating a very limited diet and my body doesn’t seem interested in anything that is not white and bland.  I have been having a lot of cramps and pains which is natural yet very debilitating.
I have found that I am my own worst enemy because I want to be “back to normal” immediately.  When I have been discussing my surgery with my physical therapist, nutritionist etc, they all tell me that this will be at least a 3 …

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Dave and I received the pathology report back from my surgery last week and the great news is that I am technically free of disease.  What this means is that there are no measurable traces of cancer in my body.  When the Dr’s scraped around my tumor they didn’t find any microscopic cells.  

This is amazing news and frankly, I was shocked.  Given the size and the rapid growth of the tumor, I assumed that even if the surgeon was able to remove the mass, he would report back that there is evidence that there are microscopic cells that he couldn’t see/get to (this is what happened 5.5 years ago after my first surgery).

Although I am cancer-free, I will be starting a new form of oral chemo as soon as I recover from my surgery.  There are two medical approaches when you are told you are free of disease: 

To discontinue any treatment and just monitor the vulnerable area very closely (e.g. CT scans every 2-3 months)
To continue with treatment as …

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I have a really wonderful amazing story about my hero, and now friend, Coach K.  Anyone who knows me knows I bleed Duke blue.  I am a very passionate and involved alumni of Duke University and I am quite outspoken about my love of the university and of the basketball team.   And if you’ve been a loyal reader of my blog you know that the week before I had my surgery, Dave and I flew out to Indianapolis to see Duke win the 2010 NCAA Championship.  It was awesome! Perhaps embarrassing for Dave to see me screaming all of the cheers at the top of my lungs but very exciting for me. 

So many of my favorite college memories revolve around watching the basketball games and celebrating the team’s wins and losses (mostly wins when I was there).  Just like many people remember exactly where they were when JFK was assassinated or when the planes flew into the World Trade Center on September 11th, I remember exactly where I was when …

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Hello! I am doing well. Still in a fair amount of pain but every day I am getting a bit better. Finally the weather is nice so I can walk.  I am proud to stay that I walked about 2 miles today. And now, I am zonked! 

 I really enjoyed this article that was in the NY Times the other day. It resonated with me on multiple levels.  First off 50% of sarcoma patients don’t make it 5 years past diagnosis and here I am thriving at 5.5 years.  Also, I love the themes of wanting to live an ordinary life but tirelessly making the most of every day and seizing the moment.  Lastly, the fact that “no one knows what will happen” and you need to set your own path is exactly how I try to live my life…for the most part I have gotten fairly good at it.  
17 Years Later, Stage 4 Survivor Is Savoring a Life Well Lived

By KATHERINE RUSSELL RICH

Published: April 26, 2010

Each year on …

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My surgery was two weeks ago today and I made my first official trek outside of the neighborhood.  Unfortunately it was to attend the memorial service of a very special woman I was proud to call a friend.
Dani’s website says it best….”Who doesn’t love the Dani? I don’t know anyone“.  This proved true today when hundreds of people gathered to wish Dani goodbye after a long and tough 3 year battle with sarcoma.
Dani and I shared the same oncologist at MSKCC.  I remember one day he said to me, “I know you always say you’d like to meet and mentor other patients like you but I’ve never found anyone with your upbeat personality and outlook on life. Jen, I finally found someone for you to meet…her name is Dani and she embraces the life just the way you do.”
We hit it off from day one.  Sharing annoying stories about hair loss, chemotherapy regimens and about annoying side effects.  Often the only good thing about going to the chemo clinic or to our …

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I am getting a bit better day by day.  I have never been very good at relaxing and these days have been a bit frustrating for me. A typical day consists of a 20 minute “stroll” on my hallway with my Ipod, about 13-14 hours of sleep, a few hours of watching Law & Order/reading, and perhaps a visitor. When the weather is nice, Dave and I go outside for a short walk with Dave acting as my bodyguard, protecting the sore stomach. It is amazing how focused you have to be to not collide with someone on the streets of New York!
All in all, I am getting better every day. The doctors are pleased with my progress and have encouraged me to take it easy for another few weeks and take a lot of painkillers. You gotta love it!
Many people have asked me to explain what the process is for having a surgery like mine so I will quickly explain how it works (with lots of fun pictures …

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Hi Everyone,
I will keep this very short and sweet because it is still extremely hard to find a comfortable sitting position in which to type. Hopefully as the days go on, I will be able to write more and more as I have a lot to share.

First off, a HUGE THANK YOU!  Words can’t express how much your blog posts, emails and phone calls helped me get through the last 10 days.  Surgery is often a very solitary experience…you are so single-mindedly focused on the task at hand that the days become a blur (“today I need to walk”, “today I need to drink”). It’s very easy to feel that you are “alone” in the process.  Your words gave me great strength.
 

Lots to share but in the interest of my comfort, I will quickly answer the trivia questions:

1) What did Jen do today for the first time in 8 days?  Eat Solid Food!  I went 7 days with nothing more than ice chips. Thanks to everyone for being delicate with the …

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Jen came home from the hospital yesterday!  Overall, she’s doing great, but as you can imagine, she’s in some pain and not real comfortable so it might be a little while before she’s back on phone, email, etc.  But I think sometime this week or this weekend, you’ll get rid of plain vanilla me and Jen will be back here with her thoughts and the answers to the trivia questions.
Thanks for your loyal support during the past 5 years and any challenges ahead.  All our love, David (and Jen)

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Hi!  Apparently my days are numbered as the guest writer here — our real author told me today that my entries are too vanilla, and she wants to add some chocolate chips!
So I guess that should tell you that Jen is continuing to get a little better each day.  But I’ll try to take her feedback to heart and spice this entry up with 2 trivia questions:
1.  What did Jen do today for the first time in 8 days?2.  Which 9-time Grammy-award winner did Jen chat with today?
and for extra credit, what happened in Jen’s room in the middle of the night last night (hint: apparently I have some competition).
I’ll try to post the answers tomorrow.
Also, to give you more of a health update, Jen called me today to tell me that she’s a free woman.  No, that doesn’t relate to the extra credit question as she actually meant that they detached her from her IV pole.  That’s another good sign of progress, and if all goes well tonight/tomorrow, I …

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Hi everyone.  Jen is making slow and steady progress.  She started on liquids yesterday and hopefully will be coming home in the next couple days.
Those of you that talked to her on Thurs to Sat might have noticed that she wasn’t completely herself.  She was struggling a bit with fatigue, mild dizziness, etc because her hemoglobin (transports oxygen to the body) was very low.  Although you might not have even noticed because she’s a superstar even with a hemoglobin level that the rest of us would have really struggled with!
The doctors said the low hemoglobin is normal post-surgery, and they gave her a blood transfusion on Friday.  This sounds like a big deal, but it wasn’t…it was basically just getting a pint of blood via an IV line.  By the next day, her hemoglobin had already improved a bit and should hopefully continue to climb.  Yesterday, I noticed that she was definitely feeling better and had a bit more energy.
It made us very thankful that the hospital has a …

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