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We received the results of my scan last week and the data was mixed. The tumor has partially responded to the chemo I have been on for the last 6 weeks. The doctors have seen some progress but not as much as they had hoped. So, both Dr. Maki and Dr. Singer are adjusting their course of action. The good news is that they have another protocol that they believe will work better. It is similar to the regimen I was on when I started my first course of chemo 4+ years ago. This treatment requires me to be in the hospital for 3 days at a time every 3 weeks. I had the option of trying to receive the treatment from the out-patient clinic but we decided since the protocol lasts about 9 hours a day, the back and forth travel would actually be more tiring than Just “sucking it up” and staying at Spa Memorial for a few days at a time. As many of you know, by now I know my way around there and it’s not that bad. Foot massages, music therapy, wi-fi and Netflix on demand make it a fairly cushy stay!

So, after a few days of mental regrouping and changing my calendar around, I entered the hospital this past Monday for Round 1. It makes sense that this round began the day after my 39th birthday. For some reason, my cancer milestones always seem to coincide with holidays. My first surgery was right on New Year’s eve, my chemo regimens have fallen on Memorial Day, Labor day, Christmas and Halloween…at least this time I was able to enjoy a beautiful sunny day for my birthday before I started.

I went to the gym the morning before I came into the hospital and had a great workout and got pumped up to crush this tumor for once and for all. The last song I listened to on my ipod before I left the gym had the lyrics “I’m letting you go, I”m saying goodbye”, so I took that as a good omen.

The words that have kept on flashing through my mind these past days have been the Gatorade Tagline, “Is it In You?” Do I really have the energy and strength to go through another round of such aggressive chemotherapy? In preparation, I pulled out the copious notes I had recorded during August-December 2005 when I last received this type of treatment. I was such an eager beaver! I had written down the specific symptoms and side effects I had experienced through all 21 days of each cycle. I even recorded with wonder, zeal and a bit of disgust that due to the major steroids I had been given, I was prone to “3 cheeseburger meals” and having a 4th meal quite often sometimes between 2-4AM when I had insomnia and couldn’t sleep. Oh, wonderful!

Part of me looked back on my history with a sense of admiration. Here I was, such a “newbie” in the process and I approached this chemo with 100% determination. I don’t remember the side effects to have been that major but when I read what was in my journal, the memories flooded back and I realized that I had actually gone through a lot. I was so positive and so focused that I had minimized the side effects in my mind. The goal was quite simple…get through this protocol and be done! My spirit could not be deterred.

These past few days I kept on thinking, “Do I have it in me” to do this again with the same level of courage and determination as I did 4 years ago? Should I ‘throw out’ my past journals and enter this chemo with the same naivete and wonder that I had 4 years ago or should I use that data to “plan” for what I will likely experience over the next few months? I realized that sometimes ignorance can be bliss! Knowing too much can create a “self fulfilling prophecy” of symptoms when I may feel very different this time around (hopefully even better).

After some consideration, I’ve decided to live this round with one foot in the past one foot in the future. I will use the knowledge I gained from 4 years ago to be prepared for any symptom I might get. My family and I have already loaded up on the creams, the nausea pills and the cheeseburgers to make sure I am ready if I experience any of the past symptoms or urges. And I have also very much embraced this round as a “newbie”, really hoping that I will wake up each day and depending on how I feel, I will plan accordingly. I will only let my past knowledge act as an advantage…it will not deter me from bringing 100% determination and courage to this battle as well.

I will write again after I get out of the hospital later this week.

I truly apologize for not writing in over a month! BELIEVE ME, it is not because I don’t have a lot to say. I have actually been writing down all of the topics I have wanted to write about so there is a lot of new content coming shortly.

My blog is transitioning over to a new back-end system (terrifying as I am not an IT person) and I need to figure this out before i post anything more because I don’t want to lose the new entries.

Within the next week, I promise you will get a lot more updates…Cycle for Survival 2010 pictures, details about my latest journey with battle #5 etc. Definitely a “must read” 🙂

In the meantime, I am attaching a link to an amazingly informative and inspiring article that Self Magazine wrote about rare cancers in their March issue (on newsstands now…Hayden Panatierre is on the cover). The article showcases how the dollars raised by Cycle for Survival are making huge strides in rare cancer research. I am very proud of all that we do.

http://www.self.com/health/2010/03/rare-cancers

Stay tuned for more.
Love,
Jen

Check out this entertaining piece that WPIX created!

A wise person once said to me “you can only appreciate the highest of highs if you experience the lowest of lows.” I always think about that expression when I am experiencing either extreme of the spectrum: If I am having a particularly tough time I realize that I have experienced so much joy and this rough patch is sure to pass. Or, when I am having a really euphoric experience I truly soak it in because I know that it’s only a matter of time until a low comes along. It’s not being optimistic or pessimistic, it’s just the way life works out.

This roller coaster of feelings could not have been more true this past week.

I started the week off so high as we were leading up to the Cycle for Survival event. We had great press appearances on CBS, WPIX, ABC Radio and NBC. We also had the opportunity to ring the NYSE bell which was a truly memorable experience. All signs pointed that Cycle for Survival NY 2010 was going to be bigger and better than ever. I was on a real high…despite these nagging stomach pains.

I visited my oncologist on Friday only to find out that those stomach pains are due to a fast growing 4″ tumor in my abdominal area. The good news is that it hasn’t spread and seems very similar to my other tumors. The bad news is that it is growing rather quickly so I need to start chemo immediately…5 days from the diagnosis. I needed to cancel my trip to Costa Rica that I was so looking forward to. Wow, what a low….

And then Cycle for Survival weekend was so amazing it was impossible to put into words. I am embedding a video here so you can get a sense of the energy and I promise to write in a lot more detail after the Chicago event. It was a “once in a lifetime” experience that we are fortunate to experience annually. We have raised $2.3MM and counting. I told everyone that I will walk into that chemo suite on Tuesday with thousands of supporters behind me and cancer doesn’t have a chance. The best high by far!

http://www.youtube.com/get_player

I slept all day Monday to get ready for Tuesday chemo. I worked out on Tuesday AM and got totally pumped up for my 5th battle against this disease. One can’t lose the irony that my 5th battle with cancer started on Ground Hog Day (I do feel like my life is a lot like the movie at times…”Haven’t I done this before?” “What behavior can I change to get a different outcome?”)!
I played songs like Tub Thumping, Don’t Stop Believin’, Stronger and the Theme from Rocky to get ready and I felt good. Despite the fact that I was starting chemo again, I was on a high…

Now it’s Wednesday…the day after chemo and I feel bad. Nauseau and stomach pains for most the day make it hard to eat and hard to do much beyond write emails and watch TV (Thank goodness for Law & Order!). I am hoping that this will go away soon and I will tolerate the chemo easier like I have other cocktails in the past. Let’s hope this low passes quickly.

Dave and I are off to Chicago tomorrow for the Cycle for Survival event on Saturday. I can’t believe that we have expanded into Dave’s home town! It gives me great pride to know that our gospel is getting so much awareness and support around the world.

I promise to write a lot more when I return. Thank you for being on Team Jen!

Hi Everyone,
We are at $1.825, so close to the $2MM mark! I have been touched by some beautiful words this week and I wanted to share them with you. The first is an excerpt my mom wrote regarding why she gets involved in Cycle for Survival. The second is my friend Serina’s solicitation email.

Why Do I Cycle? – By Sandy Goodman, Jen’s Mom (1/26/10)

Why I cycle? Ha! Certainly NOT my idea of a good time! At 62 years old and somewhat physically wimpy, the gym was not on my daily radar. But, there was my feisty daughter, 5 years ago, the 33 year old “gym rat, “ in fabulous physical condition, who was suddenly diagnosed with a rare cancer. She dealt with the surgery and chemotherapy, but did not let it overwhelm her life. Probably any request from her would have been honored, but her suggestion to me was simple, “Learn to spin, Mom. Follow my lead, and let’s us continue to be optimistic, proactive, and strong so we can tackle the road ahead.” So in the face of adversity, Jen Goodman Linn, became certified to be a spinning instructor, and provided the path for HOPE for all our family. We became spinners. Now when my life gets complicated and stressful, I pause, focus on my beautiful daughter’s will to live and zest for life, and go to the gym to spin with this powerful feeling of invincibility. I won’t give up in that room! Spinning is where I bond with her in spirit. My love pushes those pedals and this spinning medicine keeps us all tough to fight tomorrow.

Email from my friend Serina, a fellow survivor and former sorority sister

My Dear Family and Friends,

As most of you know, I was diagnosed with an aggressive, advanced stage
breast cancer nearly two and a half years ago. Over a year ago, I finished
16 months of grueling treatment. For me, treatment meant drastic, extensive
surgery, followed by five months of A/C/T chemotherapy, then a second
surgery, followed by 6 weeks of radiation and 52 weeks of herceptin
infusions to battle the specific aggressive cancer that I had. It also
meant 365 days of the oral chemotherapy drug lapatinib, that I took as part
of a clinical drug trial at Memorial Sloan-Kettering Cancer Center.

Today, I am cancer-free and looking forward to celebrating my 40th birthday
in April.

This Sunday, January 31, 2010, I will be captaining a team again for the
Fourth Annual Cycle for Survival fundraiser.

Although Cycle for Survival is less than a week away – I am only now
focusing on it. There are a number of reasons for my delay.

First, I have been extremely busy. I am happy to report that I am back at
work now and really enjoying it. At the same time, I am raising my three
healthy children and trying to find balance between work and home, so that
my health never suffers again.

Finally, there is one reason above all that it has taken me so much time to
sit down and write this letter. In the quiet of my mind – I simply don’t
want to be reminded of cancer. It took so much from me and from my family –
for a long and frightening time.

You see, for me, it’s over. For now and, God willing, forever.

At the same time, I know that my family and I have the extraordinarily
talented and dedicated doctors of Memorial Sloan-Kettering Cancer Center to
thank for this gift. And what an awesome gift it is – the gift of my
health, my life, more time with my husband Paul and our children, and the
reality that someday I may hold my grandchildren; the gift of realizing,
when the dust settled, that the hopes and dreams of my life have remained
intact.

So now I will focus. I will think about cancer. And I will stare it down
again next Sunday, January 31st, with the hope that more people like me will
someday have the chance to say: “I don’t feel like thinking about cancer
today.”

What an exquisite luxury that is. I am so grateful.

I loved this email a lot. It is not easy to continue to take cancer “head on”…in fact most patients get involved in a cause for a year or two and then move away when the cancer is not such a constant reminder. I do feel that it takes a certain amount of accountability and responsibility to commit to the cause over the long haul and purposely not run away from it. We are the ones truly paying it forward.

This article appeared in The New York Times on January 18th, 2010. My friend Lauren pointed it out to me and I really loved it. It rings very true of how I am feeling now and what I have learned over the past 5 years. Enjoy!

Still haunted and chastened by the Puritan work ethic, our culture doesn’t much believe in convalescing, in full recovery. No matter what happens in our lives — a grave illness, a wrenching divorce, a death in the family — the unspoken understanding is that we should want to rush back into the game. Like an old-time quarterback who has had one concussion too many, we are expected to stagger back onto the field no matter what.

I found out that I had prostate cancer nearly two years ago — it ended up being an unexpectedly aggressive Stage 3 cancer — and in the time since then I’ve learned that there is a big difference between recuperation and recovery.

Recuperation is just physical. The claw of the surgical incision relaxes its grip on your gut. You graduate from catheter to man-diapers to man-pads to, finally, your very own comfy boxers. Energy seeps back into your body after the radiation and the hormone therapy cease.

But recovery means wholeness: mind, body and spirit. And I reached a point last summer and fall when I realized that even though I was back at work, once again juking and stutter-stepping my way through the streets of Manhattan, I hadn’t recovered at all.

I thought I had weathered the trauma of diagnosis and treatment, thought I was ready to focus on the future. But my body disagreed.

Physically, I was game, but I soon realized I was going through the motions as I became more and more tired. I felt like a spinning quarter about to nod to gravity and wobble to the tabletop. Mentally, I couldn’t focus: I became shawled in the monochromes of depression. And spiritually, I wasn’t angry — I did want to know what this cancer could teach me — but just right then I couldn’t make sense of my cancer-blasted interior landscape.

I hated to admit it, but I had to excuse myself from the day-in and the day-out if I wanted to fully heal, if I wanted to recover.

It was hard to do. I grew up in a hard-nosed rural culture that valued willpower and raw muscle above anything else. You never admitted weakness. You could have blood pumping from your left hand and be holding a couple of severed fingers in your right, but still you tell the boss: “I’m O.K. I’ll be back to work right after lunch.”

Just one small example: My old man was igniting a huge outdoor furnace one subzero morning at Kingston Steel Drum — a factory in my hometown that cleaned 55-gallon drums — and it blew up on him. The explosion knocked him a good 30 feet. All Dad did was stand up and swear, shrug, laugh and get back to work.

But after my treatment for cancer, as much as I wanted to shrug, laugh and resume my life, I found that I couldn’t. The world seemed to accelerate as I slowed down. I was standing still, and daily life was a blur that I couldn’t hope to touch, never mind grasp.

I needed to take a deep, painful breath, lower my eyes as the manager trudged from the dugout, hand him the ball and slouch to the showers. I couldn’t go anymore.

When I was hospitalized in the early 1980s with an acute case of ulcerative colitis, the doctors tried to save my inflamed colon by throttling my diet down to ice chips and sourballs. They reasoned that the colon might respond better to treatment if it didn’t have the pressure of doing its job.

In the same way, I had to remove daily pressures from my psyche; my body wasn’t the only thing that the cancer had feasted on. I couldn’t bear the thought of commuting to New York City, or even answering the phone. I didn’t want to hear my own voice. I wanted to sleep, wanted to be in the wind.

I retreated into a chrysalis of healing: quiet but intense talk with family and friends, savoring N.F.L. games, taking long walks, losing myself in Ennio Morricone’s soundtracks to spaghetti westerns.

Each day I looked forward to dusk, craved the architecture of bare black branches stark against the gray winter sky. Some days I was a branch, some days the sky.

As our current e-hive expands exponentially, as we splinter our lives and time into nano units of interconnectivity, we are losing sight of primal time, the slow moments that make us human. Postcancer, I worry that we are becoming too fast for this world — or, maybe, that this world has become too fast for me.

After surgery and treatment, my 21st-century synapses and neurons wanted to believe that the cancer had been no more than a bump in the road toward a bright future — just a particularly nasty frost heave.

But the deepest analog part of me understood that having cancer was a life-changing event. As much as I thought I wanted to forge ahead, surge into the whirlwind of dailiness, I needed to slow way down.

The scar on my gut might have faded a bit — I had indeed recuperated — but I still needed to recover.

Dana Jennings is a reporter at The New York Times.

We are so excited about the momentum behind Cycle for Survival. Thanks to loyal support from you, we’re making a real difference for many cancer patients. In the past year, we have funded 3 trials as well as developed a new chemotherapy regimen to help people with a wide variety of rare cancers such as pancreatic, uterine, brain, soft tissue and pediatric.

As just one example, a patient called us two weeks ago to relay that “in the past I would have been out of options but some of the money from last year’s Cycle for Survival is funding a clinical trial which will hopefully save my life.”

With two weeks to go, we have already SURPASSED last year’s fundraising goal! We are now setting our sights on $2MM and I really think we can do it! Please help us if you can! Just go to this page and click on Donate to Jen4Survival in the middle of the page – http://mskcc.convio.net/goto/Jen1

Check out ringing the bell at Nasdaq yesterday!

It’s hard to believe but tomorrow, December 30th, marks the fifth anniversary of my cancer diagnosis. Five years ago I was admitted to Mt. Sinai Hospital to remove a large tumor (which we were hoping was benign) from my abdominal area.

In some ways the events leading up to and right after my diagnosis feel like just yesterday. I have many vivid memories that always return to me around this time of year:
• My general practitioner telling me that my blood work was “way off” and ordering a full body CT scan
• The radiologist asking me innocently if I knew I had a big tumor in my stomach (umm…no?!?)
• The uncontrollable coughing fits in the movie theatre on Christmas (the tumor was resting heavily on my diaphragm).
• The bittersweet shock that my clothes were all getting big on me…I was losing weight so effortlessly but why?
• The anxiety leading up to my first surgery (what would happen if I woke up during surgery and couldn’t see?!?)
• My “last supper” before I went through the colon prep for surgery (grilled cheese and French fries which I hardly touched)
• Those first few days post-surgery that were so painful (now I am an old pro at the post-surgery pain).
• Doing “laps” around the hospital with Dave on New Year’s Eve wearing Happy New Year hats (“laps” = very small crawl)

And in some ways I feel like we have been living with my diagnosis forever:
• My team of doctors who once seemed so foreign are now so familiar
• The chemotherapy routine which seemed so daunting is now strangely comfortable
• The fact that I have been wearing a wig for 5 years and don’t remember the texture/ color of my real hair
• The process of “watchful waiting” which seemed beyond stressful is now just a way of life…

Many people don’t understand me when I say that cancer is one of the best things that has happened to me. Despite all of the cons (and there are many), I do feel like it has put me so in touch with what’s important in life and what I am here on this earth to do and to contribute. Because of this, rather than make the 5th anniversary of my diagnosis a somber day, it will become a quiet celebration marking my growth as a human being.

On the agenda: a great cycling class with a tremendously motivating instructor (who, of course, will be teaching at Cycle for Survival on January 31st), a manicure/pedicure and massage, and a nice dinner with Dave enjoying some of my favorite foods (the foods I couldn’t eat when I was on treatment).

I will use this day to celebrate all that I have learned in the past five years and to solidify my commitment to how I handle my future. A future that I hope will be filled with good health. And if that is not in the cards, I now know I can take it on.

Yeah! Check out the longer version of the Cycle for Survival PSA. So exciting!

With just under 2 months to go, Cycle for Survival (cycleforsurvival.org) has raised over $500K and has signed on over 300 teams nation-wide to participate in the fight against cancer. If you haven't already done so, please visit the website and Form a Team, Join the Ride and Support the Cause!

This PSA ran on Regis and Kelly today and will be on ABC all week 🙂