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The doctors were impressed by the absence of lingering effects from the surgery and agreed with my entreaties that home is where I should be.

The surgery itself wasn’t as successful as was hoped for, in that my serum calcium level didn’t drop as far as my surgeon and his team would have liked. But the level came down just the same, and we’re hoping it will continue. I’m to report back for tests in a week’s time.

I was operated on at Memorial-Sloan Kettering Cancer Center in Manhattan, and the level of care, compassion and empathy were incredible. (“Yeah, just wait till you get the bill,” joked my roommate.)

But, joking aside, I was made to feel like a person, not a number or a statistic, by every staff member I met, and the activities and diversions they provide for patients are as impressive as they are broad.

But the highlight of my hospital experience was meeting a remarkable, courageous and inspiring woman, Jen Goodman Linn, and her equally friendly and gracious husband, Dave.

I was walking the corridor Friday morning for exercise when I heard a voice behind me say, “You’re walking pretty fast.”

I turned around and this charming woman was there. We did laps around the hallway together and learned about our respective situations.

Jen, too, is battling a rare cancer, and her fight inspired her in January to host, with her husband, a fund-raising event at a downtown Manhattan gym to raise money for Sloan Kettering. The event, during which individual riders and teams rode long stints on stationary bicycles, raised over $800,000 in the past two years. The couple plan to make it an annual event, and I’m on board for this January.

I mentioned to Jen that I believe the encounters we have with others really aren’t random, in my opinion. We meet the people we meet for a good reason, sometimes evident, sometimes not.

The bottom line is, we’re all confronting and enjoying and sometimes battling life together. We can choose to do it together or alone.

I’ve chosen togetherness

Dave and I are delighted to announce that the cycle for survival website is open for registration! That’s right: not only do we have a new name—we also have more bikes, an ambitious new goal, and a great new Web site.

Register today at www.cycleforsurvival.org/

As everyone who knows me is aware, Cycle For Survival is our “baby”. An event that we created in 2007 to raise much needed money for sarcoma and other orphan cancers that rarely receive the funding they need. The event was successful beyond our wildest dreams and we have even bigger goals this year!

This event is truly the gift that keeps giving. As I said from the event inception, my dream is to host this event in multiple gyms around the country. I would love to give millions of people the chance to exercise and raise hundreds of millions of dollars for cancer research. Well, both Memorial Sloan-Kettering Cancer Center and Equinox Fitness Clubs share my vision and they are officially partnering with us this year to make it happen!

We have instituted many changes that will allow the event to be as personal and inspirational as it has in the past while increasing the impact that we can make on the cancer community. Here are some exciting updates:

• We have changed the name from Spin4Survival to Cycle For Survival. Why, you ask? Because the word “spin” is owned by spinning.com and they didn’t like the fact that our “little ole’ charity” was getting a ton of recognition. So, fine! We like the new name just as much 🙂
• We will be taking over an Equinox location in January. Rather than having all of our participants compete with the everyday members of Equinox, we will be taking the 44th Street location and making it Cycle For Survival headquarters. This allows us to bring in a ton more bikes – 200 in total!
• We will be making sure we get the word out to the cancer community. Memorial Sloan-Kettering is hosting a kick-off party on October 22nd to get everyone excited about the event and we have enlisted a very savvy public relations firm (in addition to Equinox’ PR department) to make sure we get the word out to the right folks.

And, OF COURSE, as always, we are keeping the overhead as low as possible. In fact, as a sign of their commitment to the event, MSKCC is absorbing all costs this year and ensuring that 100% of the money we raise goes directly towards cancer research.

To date, your dedication and support has helped us raise more than $800,000 to fund pioneering cancer research at Memorial Sloan-Kettering. This year our fundraising goal is $1 million to fight this deadly disease, and we hope you can be there on January 25 to help make this happen!

Here are the details:

• Event date: Sunday, January 25, 2009 — mark your calendars!
  
• Location: Equinox Fitness Club, 420 Lexington Ave. (at 44th St.), NYC, and in satellite locations around the world.
  
• Featuring: All of the instructors you loved from the past, plus more bikes and more surprises.
  

There are many ways to get involved:

1) Sign up a team at cycleforsurvival.org or join an existing team

2) Spread the word to everyone you know…if they live in the NY area, have them join your team or start their own. If they live far away, have them create a satellite team (you can read all about how to do that on the website)

3) Help us fundraise so we can get closer to finding a cure. We know the economy is making it a bit tougher this year. Unfortunately, cancer has shown no signs of slowing down so we need research just as much as we ever had. You can donate to my team, The Livestrong Linns, by going directly to: http://mskcc.convio.net/goto/linns

Please join me again. Register today to guarantee your spot! Contact Abby Kussell at Memorial Sloan-Kettering at 646-227-2762 for more information.

I truly apologize for taking so long to write. I can’t believe practically 6 weeks have gone by. In some ways I feel like so much has happened and changed in the past 6 weeks and in many ways, I feel like things haven’t changed at all.
The good news is that the CT scan at the end of June came back clean so I am officially “off the juice”. In fact, just this past Friday I made it official by having my port removed. For those of you who remember, the port was the device I was forced to get after a year of chemo when all of my veins had hardened and I couldn’t receive the chemo via IV anymore. I really resisted having the port but once it was implanted, the chemo, and anxiety around getting chemo, became much easier. Many Doctors like you to keep the port for up to a year after receiving treatment “just in case” the cancer recurs. Dr. Maki and I agreed, however, that it was important for me psychologically to have the port removed since it is a constant reminder of having cancer in the first place. It is always easy to implant one again if I need more chemo down the road. The only challenge to this theory is that my veins really have not yet grown back (they say it could take multiple years). My surgery this past Friday was almost canceled since they had a really hard time finding a vein to give me the anesthesia. I don’t really mind getting pricked a few times with a needle but all of the nurses kept on saying to me, “It’s really too soon to have your port removed. Why the rush?” I felt like saying to the nurses, “If you had been on chemo for the past 17 months with no stops, you would understand how much I don’t want this thing anymore!” One nurse made the point that I had been thinking all along but didn’t really want to hear: “Removing your port will never erase what you have been through. For the rest of your life there will always be reminders….from your bi-monthly CT scans to your constant blood tests.” Although what she said was true, I really didn’t want to think about it at that moment.

However, I must say that the expression, ” you can run, but you can’t hide” has been coming to mind a lot recently. Despite the fact that chemo is done and I am now cancer-free and told to “go forth and hope for the best”. I find that physically, I don’t feel that much better than when I was undergoing weekly chemo treatments. I thought, rather naively, that once chemo was done, I would immediately bounce back. My hair would immediately start growing again, my strength would come back and I would no longer need to take the constant naps that have defined my weekends over the past year and a half. Well, recovery has been a very slow, often depressing process. Since I had been on chemotherapy for so long, everything is taking much longer than last time. My hair is growing back very thin and I have a lot of bald patches. My strength is a fraction of what it used to be prior to chemo…in fact, I think I was stronger during chemotherapy than I am now (it must be a mind over matter thing). And the naps are more important than ever. I find that if I don’t sleep at least 9 hours a night, I have SUCH a hard time getting up in the morning. If I don’t need to set the alarm, I find that I average about 10.5 hours of sleep a day! So much for the quick recovery.

So, here I am…living between “the end” of cancer treatments” and “the beginning” of a long, frustrating recovery process. I find that I am often my worst enemy. During chemotherapy I was “good” to myself…I understood that when I was tired I needed to nap and not working out all the time was “OK because my body needed to rest”. I am trying really hard to get myself to think that way now. My body is exerting so much energy regenerating that I am pooped most of the time. And being tired can be very depressing at times. A friend of mine equated the recovery process to what happens when you clench your first for a really long time. You often don’t realize what you have done to your fist, and how much time it takes for your first to feel ‘normal’ again, until after you unclench it. So I am now “unclenched” and wondering “how did I keep my fist clenched for so long?” I also think that now that the “race” is over (hopefully forever or at least for a long time), my body is finally able to stop pushing and relax a bit. So, please remind me to go with it rather than fight it…although not fighting it is very hard for me. When I had my port removed last week, I wore my favorite yellow “Life is Good” shirt to the surgery. It has an expression on the back of the shirt that I really love and am trying hard to live by:

On June 6th, 2008 I became a survivor for the 3rd time!

I had what was hopefully my last round of chemotherapy EVER this past Friday. Dr. Maki said that there is no evidence to show that the chemo is continuing to provide an additional benefit and there is definitely evidence that proves the chemo is starting to have a detrimental effect on my body. I have a CT scan on the 25^th of June and provided that the x-ray shows no trace of disease I will once again be released into “watchful waiting” – a period of up to 5 years where one actively monitors the body with the hopes that the disease never returns.

I had been given a “heads up” from Dr. Maki’s nurse the week prior telling me that most likely I would be ending soon. I was actually very grateful for this as the week gave me some time to think and “adjust” to this new way of managing the disease.

I have very mixed feelings about being done with chemo.On the one hand, I no longer have to deal with the side effects and the slow deterioration taken quite a toll and I look forward to the day when I will feel “like me” again.

On the other hand, for the past 16 months, Friday afternoons at chemo have become a very comforting routine for me. The nurses, the phlebotomists and the technicians have all become my friends. They have taken care of me and I have felt very comfortable “actively fighting” my disease.I am not ready to say goodbye to them quite yet. For some reason I feel that this routine has been able to keep the cancer away. If I stop, I have no control over what will happen….and having been down this road two times before, I am a bit too educated to “whoop it up” quite yet. Relapsing is all too familiar to me.

I don’t expect many people to understand why I am not thrilled by the news that, fingers crossed, the cancer is behind me. Many of my friends and family have wanted to celebrate and I have just wanted to sleep and not talk about it. The natural response I get from people is “Congratulations! Let’s Celebrate!” It is both exciting and terrifying.

As I’ve said many times before, cancer is very ironic. The good news is that Dr. Maki is fairly confident that if the cancer comes back, it won’t come back for at least 6-12 months. That is good news for two reasons: 1) It gives me a chance for my body to heal if I do need to undergo chemo for a 3^rd time and 2) It allows sarcoma scientists around the world more time to try to find another treatment or ideally a cure.

The bad news is that if it’s coming back, I mentally wish it would come back sooner rather than later. Once you are “in the fight” it is a lot easier to keep going. I had such a hard time starting the chemo process again after I was “clean” for 14 months …I can only imagine how difficult it will be if I make it that far or father this time.

So, what does the “new normal” look like? How do you go about living normally when there is a very real threat that the cancer will come back in the next few years? And because my body has taken quite a toll, it’s not like the news of no more chemo has made me bounce back to my pre-cancer self. It will most likely take months for me to start to feel the way I did before my diagnosis.

As my Doctor wisely said, “You will never make it through 5 years if you don’t make it through Week One”. So, although I don’t want to have a party or celebrate the end of my disease quite yet, I am quietly toasting to Week 1. Let’s hope there are many more cancer-free weeks like this in my future.

Although I don’t talk about it often, I have received dozens of emails and phone calls from cancer patients around the country who have read my blog or heard about Spin4Survival. When Dave and I were in Redbook this past December, a number of people reached out to me who had had similar experiences with cancer or were just grateful to hear about someone who was living with the disease and refused to become a victim of it.

I received an email this past January from a woman my age who was also suffering from sarcoma. She was a private person and did not care to share her cancer with many people. She joked to me that “Unfortunately, we have this pesky ‘sarcoma’ thing in common.”

She shared wth me her experiences and her frustrations. “Everything is just different now and will be for the rest of my life. I still wake up some mornings, feel my bald head and go, “IS THIS REALLY HAPPENING????? TO ME???” And each morning I am sobered by the sad reality that yes, it is.”

Although I was sad to hear about her diagnosis, I was flattered to hear that reading about my journey had helped her. She wrote, “It is kind of a fluke that I learned about your story. I was waiting at the pharmacy to pick up a prescription and a Redbook magazine was sitting out of place on the counter. I have never looked at a Redbook magazine before in my life. I picked up the magazine to pass the time and turned directly to the “How She Does It” expose featuring you and your husband. The word Sarcoma leaped off the page at me. I purchased the magazine and started visiting your website. As you know, Sarcoma’s are relatively rare and I have found comfort in the fact that another young, vibrant, type-A, ‘world on a string kind of a person’ is also going through this.Thanks again for sharing your story so openly, Jen. As I said earlier, you have truly helped (and inspired) me. “

Although we only communicated once in a while, I was glad to hear that my words were reaching her and helping her.

I received a voice message about 2 weeks ago from a man whose name I did not recognize. However, something in the tone of the call made me immediately call back. This man was the husband of the woman I had been communicating with. He called to let me know that unfortunately she had passed away earlier that week. The tumors had spread to her lungs and there was nothing that the doctors could do.

I was so upset to hear this news. I often choose to forget that 50% of patients who have sarcoma die which makes it all the more difficult to process when someone I know passes away. One of the wonderful things about cancer is meeting so many amazing people…and one of the most challenging things about cancer is that you are constantly reminded that this disease kills so many.

The man told me that because his wife found so much strength in my words, she had requested that any donations that family and friends wanted to make be sent to Spin4Survival. He told me that she took great comfort in the fact that Dave and I were aggressively raising money to stamp out this disease. Wow…what a tribute!

I promised him that I would continue to fight and raise money for this disease in the hopes that more people can survive.

It seems fitting that this week the Spin4Survival plaque was put up in the chemotherapy clinic at MSKCC. Although the plaque thanks Dave and me for all of our work on Spin4Survival, it truly is a reminder of the thousands of people who donate funds and join together every January to fight for a cure. When I visit that plaque every Friday when I get chemo, I am reminded about all of the people who died because the medicines and drugs could not treat the disease. It propels me to keep fighting my own battle and to continue to donate my time and energy putting an end to sarcoma.

Hello! Sorry I have not written in a while but I have been very busy with work and fun things. The past few weeks have been crazed with lots of good things!

• My mom and I went to Canyon Ranch with my friend Tina and her mom and had a great, great time! It was truly an education as well as an indulgence and we came home with lots of great tips on how to be healthy and fit. I also made a lot of “vows” about not eating processed foods which I know will wear off the minute work gets busy again 🙂
• Speaking of getting busy again…I then went to Los Angeles for 3 days of work meetings. The meetings were great and I got to spend a lot of time with the actors and creators of many of the Nickelodeon shows. That was a lot of fun! For those of you who are living under a rock, the picture above is myself with the 4 stars of iCarly (the 2nd highest rated show among kids and tweens behind American Idol)

I have learned that although I might not feel tired or sick during the week, if I don’t get my 9 hours of sleep a night, it really catches up with me. This past Friday, chemo kicked by butt. I have manged to sleep 23 hours over the past 2 days and have been eating a lot of processed, unhealthy food (for some reason I always crave, ice-cream, burgers and fries when I am nauseous!). So much for what I learned at Canyon Ranch 🙂

The doctor says we only have a few months left of chemo and I am starting to really look forward to that! I think I am “hitting the wall” a bit. I realize that the end is near so many of my symptoms and side effects are becoming more aggravated. It could be because my body is just finally saying “I’ve had enough” or it could be that I am mentally ready to be done. Regardless, we can see the light at the end of the tunnel and that is great news. Because the “novelty” of cancer has definitely worn off!

I am very excited to be going to Austin, TX this coming weekend for a Duke Girl’s weekend. Then Dave and I are off to Mexico for our friend’s wedding. Lots to fill you in on when I get back