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‘Health Update – Could be Better, Could Be Worse’

Hi Friends! It’s Dave here, your Fearless Guest Blogger. Here’s the post-surgery update (written on Tues night 9/14/10). We’ll try to post some photos, etc later in the week.

First, thanks for all the great family pictures, inspirational song suggestions, and love & support! They are really making a difference and keeping a smile on Jen’s face (yes, my lovely wife is still smiling even today…especially after she presses the button to get a dose of pain meds!)

Coming into the surgery today, we didn’t know exactly what to expect. The last couple chemotherapy regimens haven’t done the job so we knew that even if they removed all the tumors today, there was a high probability that the cancer would return.

Therefore, even though we were hopeful that today’s surgery would be a positive step in the fight, we all knew that at some point we’d still need to find a medication to kill the cancer cells or keep them from growing. In this vein, you might have heard Jen mention an upcoming clinical trial of 2 targeted chemotherapy medications that we’re hoping will do the trick.

Getting back to today, when they opened Jen up, the doctors saw more tumors than expected. None of the tumors appeared to present an immediate risk to her survival. They removed a couple for study in the lab, but they quickly determined that trying to remove them all would be complex and risky because it would require removing significant portions of intestine, bladder, etc. Even if they were successful, it would result in a very tough recovery, which would make it more difficult to start on the new medications in the clinical trial.

Therefore, rather than doing a risky surgery with questionable reward, the doctors decided that the best plan was to stitch Jen back up and get her ready as soon as possible for the trial.

This news was concerning and certainly took some time to digest. But after doing so, we realized that we’d be in a similar position whether or not they successfully removed all the current tumors – either way, we still need to find a medication to keep these cancer cells in check.

Since the surgery wasn’t too invasive, the recovery shouldn’t be extremely difficult, although Jen of course will be in quite a bit of pain for a while.

As we all know, plans can change, but our current thinking is that Jen will get a dose of traditional chemotherapy in the next 2 weeks and then start in the clinical trial as soon as possible (probably in 4 weeks).

I know you might have questions, but the above is basically what we know. We’ll try to keep you informed as we know more, but for now, let’s focus on the recovery, and let’s not bother Jen with detailed medical questions unless she brings them up with you.

Some of you asked how you can best help us. I think the best thing for all of you and for all of us is to stay positive, be strong, and of course live without fear! – DL

Fearlessly Gearing Up for Cut-Up #6

I am approaching the final days before the big cut-up #6. I was beyond touched by how many people responded to my request to send in “tough” songs to prepare me for Tuesday’s surgery. The play list that I created is a testament to the amazingly diverse group of friends that I have…I was rocking out to everything from 80’s rock (Metallica) to Hip Hop (LL Cool J and Heavy). And who would have thought that I can tolerate some country once in a while?

I picked a selection of the songs and made a “physical tough” playlist for you to copy if you’d like. There’s something in here for every musical taste and I guarantee that you will get a great sweat! Sorry if your song was not chosen, I was trying to narrow it down to a “top 30”. Here goes…

  1. Hold Back the Rain – Duran Duran 
  2. Fighter – Christina Aguilera
  3. Not Afraid – Eminem
  4. Alive – Goldfrapp 
  5. Sunshine (Georgie Anthem Radio) – Georgie Porgie
  6. Let it Rock – Kevin Rudolf
  7. Jump (Uncle Funk Remix) – Madonna
  8. Bizarre Love Triangle – New Order
  9. Tubthumping – Chumbawamba
  10. The Rising – Bruce Springstein
  11. Stronger – Britney Spears
  12. Gonna Fly Now/Theme from Rocky – Bill Conti
  13. Just Fine – Mary J. Blige
  14. Supergirl – Saving Jane
  15. Keep Pushin’ – Reo Speedwagon
  16. Invincible – Pat Benatar
  17. You Get What You Give – New Radicals
  18. Ali n the Jungle – The Hours
  19. Breathe – The Prodigy
  20. Crazy – Seal
  21. Eye of the Tiger – Survivor
  22. Get Back up – tobyMac
  23. Dreams – Van Halen
  24. Breathe Life – Radboy Vocal House
  25. Lay Down – 10 Monkeys featuring Abigail
  26. Sanctify Yourself – Simple Minds
  27. Who Knew – P!nk
  28. Don’t Change – INXS
  29. Boom – POD
  30. Everything’s Coming up Kurt – Glee Soundtrack 

Next week when I am recovering, I promise to send another playlist of “mental tough” songs…they may not make you sweat but they are inspiring. I will listen to those before I go in to the OR.

Everyone always asks me what I do in the few days leading up to surgery so I decided to make a video to share with everyone.

Basically, I eat and exercise a ton knowing that I won’t be doing either for a long, long time! I had a great cycling class today with Wil…so sad that it will be my last for the next 4-6 weeks. He dedicated the class to me and told everyone, “If Jen can do it, you better not complain!” He then proceeded to kick ALL of our butts. He played a song for me called Facing a Miracle from Taylor Dayne. Very inspiring.

For the past two days I have also totally pigged out knowing that the pounds will be coming off soon enough. As of Sunday night, I am not able to eat anything solid until Tuesday surgery. And if history is any indication, I will likely not be eating or drinking anything for 5+ days. So, I hope Lauren (my nutritionist) and Gustavo (my trainer) are not reading this but what follows is a list of how I gorged myself over the past 48 hours!

  • A chocolate glazed doughnut from one of the corner street vendors (I always wondered who ever eats those?)
  • A good part of a pint of Ben & Jerry’s Chubby Hubby ice-cream (who am I kidding? I ate the whole thing!)
  • A Levain Bakery Chocolate Chip cookie (the best in the world…for those who are familiar with the bakery, the size of 1 cookie is roughly equivalent to eating 4 cookies)
  • A huge portion of french fries (don’t remember the last time I ate those)
  • Half of a cheeseburger (very proud of my restraint at stopping half-way through)
  • Some gummy bears, worms, peaches, sharks, cars and frogs

I think it’s safe to say that as I write this, I am really not interested in eating for at least another 5 days!

I wanted to end this blog entry by expressing a sincere THANK YOU to everyone who sent me a picture that inspires them/their family to hang in my hospital wall. My mom is assigned to decorating my wall while I am recovering and thanks to the hundreds of pictures we received, she will be very busy (and I will have a really beautiful wall that is sure to make me smile and heal in no time!).

If you’d still like to send me a picture, just do it by Monday afternoon and I will be sure to print it out. Dave will post an update to let you know how surgery went and hopefully I will be back in no time (relatively speaking).

Please think good thoughts on Tuesday AM!

Some inspiring country lyrics from Bomshel's Fight Like A Girl (who would have known I would like, no less tolerate country music?) 

Hold your head high.

Don’t ever let ‘em define the light in your eyes.

Love yourself, give them Hell.

You can take on this world.

You just stand and be strong and then fight like a girl.

Oh with style and grace, kick ass and take names. 

Life’s a Beach

Dave and I rented a house in Long Beach Island, New Jersey for the week to celebrate my mom and dad’s 45th anniversary. It has been 5 years since all 8 of us (my parents, my brother, sister-in law, nephews and Dave and me) spent a vacation together and we were so looking forward to it. We got a great house with a pool, Jacuzzi and enough bedrooms for everyone. The weather forecast was great and we arranged the week so that Dave’s parents would visit for the first few days, Dave and I would have a day or two to ourselves, and then my family would join for the last few. It was a perfect way to celebrate the end of the summer!

 
All I had to do before heading to the beach on Saturday morning was to get chemo on Friday. Everything was running smoothly and we were about to begin my treatment when I shared with my nurse that I was starting to experience low-level abdominal pain and belly “fullness”…symptoms that I had previously when the tumors were growing. Since I am not one to complain, she took my symptoms seriously, spoke with my oncologist and they decided to expedite my CT scan before I started chemo (it was originally set for right after Labor Day).
 
The results were not what we were hoping for. We discovered that unfortunately the past few chemo regimens have not been effective so my tumors have grown. My oncologist and surgeon spoke and they agreed that the next best step is to remove the tumors with surgery # 6 (set for Tuesday, 9/14). Not sure what plans are post surgery. One option might be a promising new trial (funded with Cycle for Survival dollars – amazing!).
What news to get right before heading out for vacation! But I had been looking way too forward to this vacation to let the news put a damper on our week. I took long walks on the beach, swam in the pool, spent quality time with my family and ate a lot of ice-cream knowing the pounds will soon be coming off.
 
Dave and I are hanging in there. We have been in this position before and we are treating this surgery as no different than the others. While I am really NOT looking forward to being immobile and in pain again, it also always puts things in immediate perspective. I am lucky to be alive and be surrounded by such supportive friends and family.
 
As always, we will be posting updates on this blog so that is, by far, the best way to stay in the loop (journal.jenanddavelinn.com). My blog will soon have an exciting new design (and you will be redirected to a new site) that you will see but the content will still be the same.
 
I am hoping that I won't be in the hospital for more than a week. Feel free to directly send me notes and messages…they make me happy! But also please understand that I might not get back to you. Also please email me a fun picture of you/your family this week that I can print out and hang in my hospital room so that I am surrounded by love (jengoodmanlinn@gmail.com).
 
You all have been so supportive over the past several years so please continue to just do the same. And get ready to register for Cycle for Survival (cycleforsurvival.org) …the dollars raised in 2010 alone have already gone into 10 trials to help a wide range of rare cancers! Putting your time and your influence behind growing the event is by far the best way you can help me and so many other patients.
 
We love you and thank you for being such amazing friends to us.
 
Jen

Ending the Summer with a Press “Bang”

Hi everyone,
The last few weeks of summer have been crazy with lots of chemo treatments and getting ready for vacation! Dave and I rented a beautiful house in Long Beach Island, New Jersey for the week leading up to Labor Day. We are going to have Dave’s parents join us for the first few days and my family (mom, dad, brother, sister-in-law and nephews) join us to wrap up the week.
I don’t like to jinx things but the weather forecast is phenomenal. I am really, truly looking forward to getting away. I have been putting on my fearless face but the last few months have been challenging for me. I am just tired and can’t wait for some distraction and R&R.
We have some big tests when we return…all on our anniversary of course! I promise to write about the week away and provide any medical updates in the coming weeks. For now, I am happy and living in the moment!
While I am away, I thought you might want to read some of the great press that we have been receiving. So, so exciting

The City of NY Has Spoken!

Cast Your Vote for Jennifer Goodman Linn in the 2010 Energizer Keep Going® Hall of Fame By Clicking Here. PLEASE VOTE 1x a DAY EVERY DAY THROUGH AUGUST 20th

I have the greatest friends in the world! We decided to take our message to the streets and last Friday over 20 close friends became ambassadors for getting the JENERGIZER inducted into Energizer’s Hall of Fame! PLEASE remember that we have only until THIS FRIDAY 8/20 at midnight vote. So spread the word and keep voting! Check out the amazing pictures we took and enjoy the funniest video to date!

Cycle for Survival – Setting the Date and Giving You a Glimpse of “Behind the Scenes”

The dates are now set for Cycle for Survival 2011! In addition to expanding the events in New York City, Chicago, we will be heading to Roslyn, Long Island as well! Cycle 2011 will be the biggest ride against cancer ever! So mark your calendar and save the dates!
Dates:
Saturday February 5th: Chicago @ Equinox The Loop (morning and afternoon shifts)
Saturday February 12th: Long Island @ Equinox Roslyn (morning shift) and NYC @ Equinox Fifth Avenue (evening shift)
Sunday February 13th: NYC @ Equinox Fifth Avenue and Graybar (morning and afternoon shifts)

As a little treat we decided to let you behind the scenes to see what really happens at a Cycle for Survival meeting. Enjoy the video below and PLEASE remember that there are only 5 days left to induct me into the Energizer Hall of Fame so keep voting until midnight, Friday 8/20!

Cast Your Vote for Jennifer Goodman Linn in the 2010 Energizer Keep Going® Hall of Fame By Clicking Here. PLEASE VOTE 1x a DAY EVERY DAY THROUGH AUGUST 20th

Cycle for Survival in The Wall Street Journal!

Cast Your Vote for Jennifer Goodman Linn in the 2010 Energizer Keep Going® Hall of Fame By Clicking Here. PLEASE VOTE 1x a DAY EVERY DAY THROUGH AUGUST 20th

 

Cancer Patient Gives Back in Cycle of Gratitude
By SHELLY BANJO
 
Jennifer Goodman Linn has one main mantra: Just keep going.
 
After being diagnosed in 2004 with sarcoma, a rare form of cancer, the former Nickelodeon marketing executive vowed that if she survived she would do something to show her gratitude.
 
This year, the 39-year-old looks to surpass $5 million in funds raised for rare cancer research at the Memorial Sloan Kettering Cancer Center through Cycle for Survival, a relay-style indoor team cycling event she and her husband, David, founded in 2007. Last year, 600 riders participated and raised $2.5 million.
 
As an avid cyclist, she says it was spinning classes that kept a semblance of normalcy in her life. Says Ms. Linn: "I might have cancer but cancer doesn't have me and the minute I change my life for the disease it wins."
 
After seven courses of chemotherapy and five major surgeries, this month she found out she was accepted into a new medical trial that stemmed from research financed through her own fund-raising at Cycle for Survival.
 
"Hopefully it helps me, but if it doesn't it will help someone with cancer in the future," she says.
 
The trial is part of about a dozen trials supported by Cycle for Survival, which is dedicated to funding research on what Ms. Linn calls orphan cancers, such as pancreatic, brain and pediatric cancers with a prevalence of 200,000 or fewer people a year.
 
Collectively, these diseases account for half of all cancers and affect millions of people. Individually they tend to receive less attention and funding from donors and pharmaceutical companies compared to what doctors refer to as the big four—breast, lung, colon and prostate cancers.
 
While the number of rare cancer cases has been steadily increasing, they attract fewer federal research dollars than more common forms of the disease, says Amy Carpenter, director of fund-raising programs for Memorial Sloan Kettering Cancer Center.
 
"We thought unless we raised billions of dollars we weren't going to make progress but trials for these rare cancers can cost as little as $100,000 and make a huge difference," Ms. Linn says.
 
Already, Cycle for Survival has supported breakthroughs such as clinical trials of a tumor-shrinking chemotherapy regimen and drugs that destroy sarcoma cells, as well as a study providing new insights into rare cancer tumor biology.
 
Due to seed funding for these trials, doctors are able to then attract additional funding from other donors and government grants.
 
"Within six months from the Cycle for Survival event we can report dollar for dollar where the funds will be spent and to which trials it will go to," Ms. Carpenter says. "The funds are quickly funneled into the labs and the doctors are putting it to use, it's very turnkey," Ms. Carpenter says.
 
 
*Your drawing is not made up of "pixels" – These distinctive dot sketch portraits of celebrities in the WSJ are popularly known as HedCut drawings composed only of tiny ink dots and lines and is unique to the paper. They are drawn by hand [no computers] using just pencils for tracing and ink pens to emulate the look of woodcuts from old-style newspapers, and engravings on certificates and currency.

Not as Good as We Hoped For, Not as Bad as we Feared

Cast Your Vote for Jennifer Goodman Linn in the 2010 Energizer Keep Going® Hall of Fame By Clicking Here. PLEASE VOTE 1x a DAY EVERY DAY THROUGH AUGUST 20th

 

This has been a very long week. I am physically and mentally drained from all of the Dr’s appointments and the chemotherapy. The good news is that my white counts were up and I was able to get treatment on Tuesday. The frustrating news is that the latest CT scan revealed that the chemo is not working as well as the Dr’s had hoped.
 
I met with my oncologist on Tuesday and I was switched to a new regimen (my 7th!). I met with my surgeon on Thursday who agreed with the plan and confirmed that he could perform surgery shortly if the chemo doesn’t work. Since surgery is really a short-term solution, we are all hoping to find some sort of chemo cocktail that will work at some point.
 
There are also new trials being developed all the time (many developed from Cycle for Survival funding)! I am hoping that one day in the future there might be a trial that I could be placed on. How amazing it would be if my life were prolonged from research that developed out of Cycle for Survival!
 
It is extremely gratifying that I, and so many others, might find more hope in these new cocktails that the Dr’s are creating.
 
For now, I just need to get through the next 4-6 weeks until I have my next CT scan post Labor Day (on September 7th – our anniversary of all days!)
 
There were a few hours on Tuesday that I knew the results of the CT scan were not as positive as we had hoped for. I was expecting to go right into chemotherapy and my nurse didn’t order the drugs saying that my Dr. wanted to review the results with me first.
 
As many of you know, I have pledged to live a fearless life. In fact, I am in the process of launching an inspirational speaking and marketing consulting business that is called YOU Fearless…all based on the premise that when we remove fear from the equation, we can achieve what we never thought was possible.
However, more as an experiment than anything else, I allowed myself during those few hours of uncertainty to go where I never go… to the dark place of fear and helplessness. I wanted what my mind would “come up” with during those moments…is fear of the unknown really as debilitating as I imagine? When you just “give up” and assume the worst case scenario, where does it take you?
 

My mind naturally started to think of sorrow, pain, and loss. “Will the tumors start to really hurt if they grow bigger?”, “Will the pain prevent me from doing things I love to do?”, “Will I become a burden to Dave and our families?” At what point will the doctors say the dreaded words, “There’s nothing more we can do?”
And I realized /confirmed a few fantastic things during this exercise:
 
1) Fear is a waste of time…my mind jumped to all of these conclusions that were future-oriented and not even grounded in reality. Not only were my thoughts not productive but they took me away from thoughts I could create that actually were productive. Who has time to waste on fear? Not me! I got a lot going on ☺
 
(2) The other thing I realized is that when you accept what could be, you are truly open to what is. The exercise made me explore the parameters of my situation and allowed me to more freely talk to my doctors about all of the options I might have.
Please hope that this new chemo works (it is kicking my butt so hopefully that means something!)
 
And please don't forget to vote for me and spread the word…only 2 weeks left! If you haven't yet seen this hysterical video that my Mom and Dad made nominating me for the Energizer Bunny Hall of Fame, check it out. 

Accepting Uncertainty

Cast Your Vote for Jennifer Goodman Linn in the 2010 Energizer Keep Going® Hall of Fame By Clicking Here. PLEASE VOTE 1x a DAY EVERY DAY THROUGH AUGUST 20th
When I look back over the past 6 years, the worst parts by far have been the moments when I don’t have a clear plan. Being the type-A personality that I am, for some reason plan = comfort to me. When I mentor other cancer patients, I always tell them that the first few weeks are the hardest. Not only are you dealing with the overwhelming adjustment of living with a disease but often, the Doctors don’t agree and 2nd and 3rd opinions become more stressful rather than less stressful.

I remember early on in my diagnosis, we were deciding between two doctors/two hospitals. Although both completely agreed with my diagnosis and with the treatment plan, one Dr. told me basically that I had to be a “boy in a bubble” and severely curtail my work life and personal activities. The other Dr. told me that although the treatments might be rough at times, he was determined t let me do all that I wanted to do and live the life I want. No surprise, you all know who I chose to work with!
I was reminded of this “uncertain” feeling again this week when we learned that my blood counts were low for the 2nd week in a row (a “first” for me and not a “first of the good kind!). My oncologist gave me a shot to boost my counts and told me that I shouldn’t change any of my planned activities as the white count was beyond my control and all I needed was some time to have the levels readjust themselves. That sounded great to me until I visited one of my other many Dr’s this week,’
“I totally disagree with your oncologist,” he said. “You are focusing your energies on getting your counts up which is great but what about also focusing your energies on NOT letting them get worse? You shouldn’t be around any kids and should cancel all of your plans until your counts are back up,” he said. GREAT….now what do I do?
I called my oncologist who confirmed that living life normally wasn’t going to harm me…BUT there were parts of me who did feel like after 2 weeks of rejection, I should isolate myself from the world (if only to feel like I was doing more).
So, what do you do when life throws you uncertainty? You make a decision that you can live with. So, I did a bit of both. I reached out to all of my friends with whom I had plans this weekend and explained my situation. About half of my plans dissolved because folks didn’t want to be responsible for getting me sick! The other half promised me that they were healthy and I managed to have a great weekend.
If I didn’t get to visit my friend’s pool this weekend with my friends, I wouldn’t have had the opportunity to film this hysterical “bloopers reel” of why I should be the next Energizer Hall of Fame Inductee. Please watch and laugh!

This week is a BIG week for me. I find out if my counts are up so that I hopefully can get chemo again. I also have a scan that will let us know directionally if this new chemotherapy regimen is working. Please send good thoughts my way!
Ahh…dealing with uncertainty. Although I am used to it by now, it never seems to be “easy”.

A “No Regrets Weekend”

Cast Your Vote for Jennifer Goodman Linn in the 2010 Energizer Keep Going® Hall of Fame By Clicking Here. PLEASE VOTE 1x a DAY EVERY DAY THROUGH AUGUST 20th

 

The first thing I thought of when my Doctor rejected me from chemo last week was not “I hope I don’t get sick.” Or “I hope the cancer isn’t spreading.” It was, “I hope this means I still get to go see my college girlfriends this weekend for our reunion getaway weekend!”
 
Every year or so, my Duke girlfriends and I pick a destination and meet to reminisce about old memories and create new ones. This is no easy task because among the 6 of us there are 14 children (OK, one of our friends has 7 which really tips the scales), 5 husbands and a ridiculous number of miles. No one lives in the same city. We fly from San Francisco, San Diego Charlotte, Nashville, Boston and New York to be together. Over the years we have met up in Las Vegas, The Big Apple, Nashville, Austin and have attended each other’s weddings in New Orleans, upstate NY, New Jersey and Altanta.
This year we were headed to my friend’s family home at the Jersey shore and I really didn’t want to miss it! My girlfriends were selfless enough to offer to change the weekend plans and visit NYC instead but being a proud Jersey girl, I knew that a little sun, boardwalk and Springsteen would do me well.
 
I was a bit concerned about exerting myself too much so I asked myself, “What would the best outcome be of this next week?” My answer was “that I get to hang out with my girlfriends AND have my counts be good enough to get chemo when I return”. Well, we all know that unfortunately I don’t have a lot of control over my blood counts…but I did realize that I do have control over how I handle myself over the weekend. So, I visited the shore and in addition to having a great time walking on the beach, eating ice-cream on the boardwalk and going out to great dinners, I also took a few naps and made sure to sleep well at night. I told my girlfriends upon leaving that I had “no regrets” and that if my blood counts weren’t high enough when I returned to have chemotherapy, I couldn’t blame the way I conducted myself over the weekend (well, unless excessive salt water taffy makes your counts low!).
 
I was so glad that I didn’t say no to the weekend and seized the day. Because when I went in for blood work yesterday I was shocked to find out that my counts were even lower than last week! It’s hard enough to be a chemo reject for 1 week but for 2?!? My doctor gave me some shots to artificially boost my counts and hopefully this won’t happen again going forward. Imagine if I had not gone to the beach and my counts were still low (likely what would have happened)…I would have been so upset. I would have sacrificed something really important to me and I still wouldn’t have had the outcome I wanted.
 
I have learned over the past 6 years that there is a way to, in fact, prioritize your health AND live the life you want. The answer isn’t always an “either, or” situation. You don’t have to abandon what you love to do or want to do because of fear of what might be or could be. I made a commitment to myself that I could go away with my girlfriends AND (not but) take care of myself in a way that would make me satisfied. So many of us cancel plans or turn down things that we love to do because of fear of what might happen (“If I go to the beach with my girlfriends, there is no way I will be able to rest in a way that will improve my health”). While I was definitely frustrated and annoyed that my counts hadn’t improved, I knew I couldn’t blame the way I conducted myself…which made the weekend all that much sweeter.
 
I love my college girlfriends and I believe that being in their presence actually improved my health and well-being this past weekend. Check out the “Top 10 “ video they created for my Energizer Bunny Hall of Fame Nomination (be warned, it’s a bit “R” rated!)