Category Archives: Uncategorized

Dave and I wanted to thank all of you for the wonderful well wishes and prayers you sent our way for today's tests. Unfortunately although we know we have the biggest support network known to man, we did not get the news we had hoped for.

The CT scan revealed that the tumors continue to grow. If we were trying to find the silver lining, it would be that they are not growing quite as quickly as before…however, they are growing quickly enough that we need to try another option soon.

We will be spending the next week or so figuring out what option is best…likely a treatment in Europe.

We are planning on still heading to Chicago tomorrow for Memorial Day weekend to spend some time with Dave's family and get our mind off of things.  Please enjoy the start to your summers and treasure every moment with family and friends.

We will write again once we have a plan. Much love,

Jen and Dave

This past week has been tough for me. The chemo has given me fevers almost daily and I find that I feel good in the morning but by about 4PM, I am ready to call it a day. I get very flushed and need to take a nap or lie down for the rest of the day. All in all, it could be so much worse so I am relatively happy with these side effects.

The chemo seems to be pretty tough on my blood counts and blood markers this time around. Despite the fact that I am eating well, almost every nutritional marker (sodium, calcium, potassium) is low and my platelets are still very low. My doctor figures this is just the chemo doing its stuff so hopefully we will just keep an eye on it and it won’t get any worse.

I was able to get chemo this past Thursday which made me happy. I really don’t like to have to take weeks off. I also received my monthly targeted chemotherapy shot which is literally mixed like cement before they inject it in your posterior region It is amazing how sore you are for the few days after this shot. I keep on reminding myself, “It just means that the drug is working,” but when you can only sleep on one side and you can’t sit in a chair for a few days, it is not fun. I literally am hobbling around the house today because my butt is so sore. Lovely!

My CT scan is right before Memorial Day weekend and I am trying my best not to think about it. I feel OK so I hope this means that the chemo is working or at least stabilizing my tumors. As you all know, I don’t like to spend a lot of time thinking about what could be. It’s a bit nerve-wracking because this test does have a lot riding on it. But, I remind myself that my husband and doctors have done a lot of research to determine what we might try if this regimen is not working.

Granted we are really getting into experimental ground now but we will swallow that pill if and when we need to.

I find that when I don’t feel well or I am down, I love to be around children. I think it’s because they haven’t developed fears about what to say…they just say it like it is. I think we all wish at times we could just “say it like it is” but we get overwhelmed or concerned about people’s reactions and this makes our communication less honest and pure.

So many of my friends who have dealt with cancer credit their kids for keeping them sane. Some of my favorite stories:

• My friend’s 5-year-old daughter consoling her mom after she lost her hair from breast cancer. My friend was uncomfortable going out for the first time without her hair. Her daughter held her hand as they got out of the car and said “Mommy, I think you look beautiful with OR without hair
• My friend’s 8-year old son being told on the playground that his mom was going to die of cancer. He matter-of-factly looked at the boy who said this and he said, “She doesn’t have that kind of cancer.”
• My friend’s 10 year old son reacting to his mom feeling overwhelmed by cancer treatments, work and raising a family. “Mom, we all have tough days. You shouldn’t be so hard on yourself”

I received a great treat a few months ago and apologize for being delinquent in posting this great “out of the mouths of babes” story. Dave and I have dear friends Kath and Adam who live in Chicago. They have two sons, Max and Ty. Max and Ty love to take ballet class. They don’t mind that they are the only boys in their class which I think is awesome. Kath and Adam wanted to reward them for their independence and their hard work so they took them to see Billy Elliot.

They had no idea that although the show was, in fact, about a young boy who loves ballet, it also contains a lot of very graphic language. Max and Ty came home from the show cursing like crazy. Kath and Adam decided to give them an assignment and encouraged them to “get out” all of their curse words in cards to Jen to wish her cancer away.

You can imagine the huge smile I had on my face when I received these cards in the mail! I love the passion and energy that Max and Ty show in their cards. After all they are saying exactly what we all want to say but being adults prevents us from being so honest and candid.

Have a great week. I would appreciate it if you don't individually email me or call me to see how my tests went.  I will update the blog when I have news to share.  Thank you for understanding.

It has been a week of highs and lows but mostly highs.   I had such a wonderful time on Monday speaking at the American Airlines Women in Aviation Conference about Living Fearlessly.  As soon as I get videos and pictures I will make sure to post. 

I also got to see Priscilla Queen of the Desert on Broadway with my two good friends, Alicia and Kat, who I traveled with to Australia 20 years ago (I can not believe it has been that long!)  The show was fantastic and I highly recommend it to anyone who loves great music, over-the-top costumes and drag queens!

Sandwiched in between those great events were lots of Dr's appointments and chemotherapy.  The good news is that my platelets and my liver function seems to be moving in the right direction.  We will feel better if we continue to see improvement.  Chemo has been very hard this week.  I find myself so physically exhausted at the end of the day.  I fall into the deepest sleep for 10 hours and wake up with lines all over my face!

I am into my 2nd week of being a blog expert on WebMD and I am having a great time. I don't plan on posting my WebMD blogs on this site but this is a topic that I have always loved so I wanted to share it with you. You can read it via the WebMD link or I posted the content of the blog below for those of you who don't want to leave the page.  I hope you enjoy it!

 It was very fun to write and I think it teaches some valuable lessons about being an advocate for yourself regardless of what you face in life.  PLEASE post comments on the WebMD site so they think people are engaging with me 🙂  I have to build up an audience.

http://blogs.webmd.com/cancer/2011/05/ill-be-bald-or-fat-but-not-both.html

I'll Be Bald or Fat but Not Both

These aren’t necessarily the first words you would picture a patient saying to their team of oncologists when they receive a cancer diagnosis. However, I believe they were pretty close to mine.

I was 33 years old and had just found out that I had a rare type of cancer and my odds of surviving were 50/50. I vowed that I would become my own best advocate. I would not only be a star patient but I would be a star at taking care of myself and my physical, nutritional and spiritual needs. I was determined to take control of my treatment and set parameters and boundaries when it came to my disease. Just because I had “cancer” did not mean that I had to forgo things that appealed to me.

I explained that obviously I want to do all I could to rid myself of the disease and that was clearly the #1 priority. HOWEVER, if it was at all possible to minimize the amount of steroids I would need to take, I would greatly appreciate it. I didn’t want to lose my hair AND gain 20 pounds if I could help it. My doctor explained to me that the chemotherapy regimen he was about to put me on would, in fact, make me lose my hair.

“OK, but if you make me bald, I don’t want to be fat too!” He immediately started laughing. I think he was so surprised by my reaction. I am pretty sure no other patient had been so bold (or so off their rocker). And then my doctor turned to me and said something very unexpected: “I wish more patients were as vain as you.” “What?” I said, “I must have heard wrong because the last thing I expected out of this selfish, egotistical conversation was a compliment.

“Being vain is a GREAT thing,” my doctor shared. It shows that you have a true desire and willingness to live. To be honest Jen, I get worried about the patients who are not willing to set any parameters and no longer care about the quality of their life or their looks.”

I left that day feeling empowered and a bit lighter on my feet. If there was one thing you could say about me, I was vain! And the conversation that I had with my doctor made me realize that asking for what I needed was just as much a part of my treatment and recovery regimen as the chemotherapy.

Over the years I have asked for a lot of things that seem out of the ordinary. At first, it was hard for me to ask. I felt like I was being difficult or high-maintenance or unreasonable. But then I realized, “Hey this is my cancer journey and I want to do it in a way that works for me.” It was important for me to continue to stay in shape so when I found myself in the hospital for 3 days at a time for chemo treatments, I asked if they could bring a stationary bike into the room. I also find that practicing relaxing breathing techniques really helps me manage pain so if I need to be in the hospital, I ask for someone from the integrative medicine center to visit me in the hospital for a quick session.

My doctor and I joke around about my “special requests” from time to time but he always appreciates them. When I asked him recently if I could put self-tanner on my bald head so it wouldn’t look so different from my olive-toned face, I thought he might fall out of his chair.

But I never forget, I might have cancer but cancer doesn’t have me.

It’s been a long time since I’ve written about some of the amazing people I’ve met along this crazy, cancer journey. Well, today I couldn’t resist because I have a truly beautiful story to share.

Dean Baer is an extremely talented artist who combines Abstract and Impressionism styles and describes his artwork as “Expressionist”. Although I think his artwork is truly beautiful, I had no idea who Dean was until about 6 months ago.

A friend of mine who was opening an art gallery in Seattle shared my story with Dean and he said he was inspired to create a painting for me. In the meantime, he introduced himself to me on Facebook and we began to be friends, gaining inspiration from each other.

The other day, I received The Red Door, an amazingly, beautiful, meaningful painting that was created with me in mind. It’s amazing how Dean intuitively knew my favorite colors and how this painting would fit perfectly on a certain wall and complement our home’s décor so well. I absolutely love this painting.

What I see is a woman who is standing in front of two doors — one is open and one is closed. She is choosing with door to enter/which path to take in the next leg of her journey. To me, it symbolizes the fact that we always have a choice in how we move through our lives. There are “doors” that present themselves to us all of the time and WE choose whether we see that door as open or as closed, as an obstacle or as an opportunity. I find the painting so empowering. It symbolizes that your life is what you make of it. No one else has the ability to choose your path but you. 

I immediately hung the painting on my wall and look at it every day. It is also a reminder to me that there are “angels” in all of our lives. People like Dean who come into your world and change it for the better. I am so fortunate to have met Dean and benefit from his talent and his huge heart. Thank you Dean for such a wonderful gift. I have no doubt that this painting will continue to provide strength for me as I handle the “doors” that present themselves in my life.

Luckily this week has been a better one for me. How’s this for irony? I went to bed early on Sunday night and woke up and said to Dave, “The chemo is working…I feel better. I have no doubt we are on the right path”. The next morning we woke up to find out that Osama Bin Laden had been killed at precisely the same time that I made that statement. Two terrorists going down together!

I had no fevers this week and my abdomen seems to be stabilizing (it hasn’t grown this week, in fact it has slightly shrunk in size) and I feel better. The transfusion gave me the energy I needed so I was able to do a lot of things I wanted to this week. However, for some reason, my liver function is abnormally high again and my platelets are dangerously low. We have a feeling it’s the combination of the 4 drugs I am taking so my oncologist removed one this week and I will go in for blood work on Tuesday and hope that my levels are more balanced.

I was very concerned to remove one of the drugs from the equation (even for just a few days). My mind kept on saying, “But what if that’s the one that’s working?!?”. But, as we know, we need to put our trust in the experts and I believe my Dr. is going to solve this equation. For now, I am just hoping I continue to feel well. I also lost 4.5 of the 6.5 lbs I gained last week so swelling seems to be under control. Thank you for all for your “swell-free” wishes. I believe they really worked!

I spoke as part of Labaton Sucharow’s Women’s Initiative about living fearlessly and spoke at NYU’s Heyman Center about the success of Cycle for Survival. You can see my speech at the law firm by visiting the media section of my website although I warn you, that it is 40 minutes long! (direct link is http://youfearless.com/video/jen-provides-fearless-tips-labaton-sucharow-part-their-womens-initiative-1). Also, make sure you always visit the “Fearless News” section of my website on the bottom right corner of the homepage. That’s where I update you on all of the exciting “doors” that are presenting themselves in my life!

Dear tumorous cells that continue to make a comfortable home within my abdominal cavity:

We’ve known each other a long time now…It’s been almost 7 years since you first made yourself known during a game of tennis at our friend’s wedding in Scottsdale, Arizona.

You’ve been more or less a big part of my life since then. You might leave for a few months at a time but you always seem to return. I admit that I’m probably a pretty fun place to hang out…I have a great life, tons of friends, a great family, I laugh a lot and I feed you well.

Well, we’ve never had a hard-core negotiation and now’s the time. I’ve tried all kinds of different approaches with you. At first I was angry and tried to beat you out of me…not just medically with tons of toxic chemotherapy and invasive surgeries but with grueling workouts that I was hoping were too tough for you to handle. Recently I switched my approach. I’ve tried to partner with you and be reasonable. I’ve tried to nurture you out of my body, providing you with peaceful meditation, reiki and acupuncture. But no, you don’t seem to be content with that either.

What’s it going to take?

Hindsight is 20-20 and I’ll admit that the first few years you announced yourself I was grateful you came along. Don’t get me wrong, I never wished for you and it was never easy, but you undoubtedly helped me take responsibility for creating a richer, more meaningful life. I truly found my life’s purpose and stopped spending time with people and places that weren’t true to my mission. I started to realize how much time I was spending with activities that weren’t truly fulfilling and I changed my lifestyle and my attitude to reflect my new learnings.

I founded a charity that has not only given back to me, but to millions of others. So, if you’ve been waiting 7 years for a thank you, here it is…Thank you for helping me take account of my life and changing it for the better.

But now it’s truly time for you to rebalance yourself in my body and find the exit door. I promise you I will not forget all of the lessons I have learned from you if you leave forever. To be clear, Cycle for Survival will STILL thrive whether or not I have cancer. I don’t need to keep you to be “successful”. And I’m not going to resort to my old ways without you in my life. And I’m pretty sure my friends will stick around too…even if we get rid of some of the drama.

What I’m trying to say is that by choosing my body, you have truly met your match. What you don’t realize is that just as you have become more resistant over the years, so have I. You’ve had seven years to learn how to handle different chemotherapy regimens and adapt to them. Well, I’ve had seven years to learn how to handle you. What at first was overwhelming is now the “new normal”. If you think I’m giving up after this much time, you don’t know anything about where you’ve chosen to live.

I don’t think I am being unreasonable in asking you to leave. Some of you can stay. Healthy people can absolutely function well with a certain level of cancerous cells in their body…most people don’t even know they have them. But, you don’t seem to understand the word BALANCE. It’s time for some of you to leave. We need to re-balance between the benign and tumorous cells and find a happy medium.

I am asking nicely…let’s help each other find the balance we need.

Your compassionate yet getting-to-the-end-of-her-rope hostess, Jen.

___________________________________________________________________________________________________________________________________

This week has been a bit tough but looks to be turning up. The few days after starting chemo were tough. I had constant fevers and stomach cramps. The good news is that these symptoms all dissipated by Monday and when I had chemo this Friday (we increased the dosage and added another pill), I seemed to tolerate it much better.

That being said, I am starting to swell which is very concerning…both medically and mentally. I gained 7 lbs this past week which we know is water weight (unfortunately the chemo has not made me grab burgers but rather saltine crackers). If the weight gain continues, we need to figure out another plan. I can’t swell because it’s dangerous.

It’s also terrifying to me because I am so thrilled that I am still able to walk comfortably, get to the gym a few days a week etc. The minute I become immobile, it’s very hard to stay positive. Please wish for a swell-free week. Wish the fluid away.

I am getting a blood transfusion on Sunday because my energy has been a bit low. They always make me feel better so I am looking forward to the little “kick” that will provide!

I will write in a few days and tell you about the book I am working on that I am so excited about, I Know You Mean Well But…

This past week had to be one of the longest of my life (and I assume Dave would agree).  Since I last wrote, we have spent about 90% of our waking hours meeting with, consulting or emailing with doctors and labs across the country (and world) to try to formulate a plan that we can be comfortable with.  There have been lots of hiccups and bumps along the way (like for the few hours we thought I had Hepatitis not realizing that when you test “positive” it just means you have had the vaccine before).  Good times!

As many of you know, not having a plan in place can be very stressful so although our plan is a bit “out of the box” because we’ve already tried so many of the more typical drugs, I was thrilled that we committed to it this past Thursday and started.

Partly because I am tired of talking about it and partly because I truly don’t understand all of the medical details, I will keep this very top line.   We are basically trying a combination of 4 different drugs to attack my tumor very aggressively.  Because my tumor is “highly complex” at this point and has various different genetic mutations, it’s unlikely that one form of therapy will work.  So we are throwing multiple agents at it hoping it retreats quickly.

This past Thursday I started on two traditional chemotherapy drugs that had been used in combination on me in 2007 and 2009 and we saw a positive response.  In addition to those two drugs,  we are adding two newer, more targeted chemotherapy drugs (1 is a shot and 1 is a pill) that are supposed to go directly to the tumor source and work more “personally” on the tumors.  The reason for trying  these drugs is that, although rare with sarcoma, my tumors tested positive for certain receptors in my body.  So, I started the two chemo drugs and the shot this past Thursday and will begin the daily oral chemo next week.  This chemo regimen is two weeks on and 1 week off although the pills are daily and the shot becomes once a month but for the next two weeks it’s 3 times a day (ouch!)

On Tuesday I will have a biopsy to remove tumor cells so that we can hopefully implant them in mice and try experimental drug combinations on the mice to extrapolate if they might work on me.  This process takes 3-9 months, and we have no idea if the mice will “take” to my tumors or how they will respond, but it provides us some hope for a plan “B” so we are anxious to get started.

A story keeps on coming into my head this week about a dear friend of mine who had a very difficult time getting pregnant years ago.  She and her husband tried IVF treatments.  Anyone who is familiar with this procedure knows that there is a 2-3 week period after the embryos are implanted into a woman’s body that she doesn’t know yet if she is pregnant or not.  The doctors perform tests a few weeks later and then let you know if the embryos “took” and created a fetus.  I remember my friend telling me that she realized she had a CHOICE in how she approached those tough few weeks: she could either assume she wasn’t pregnant or make the best of the situation and live her life as if she absolutely, positively was pregnant for those few weeks.  I loved that she chose to be pregnant.  I have decided to do the same thing.  Until a Doctor tells me that this chemo is not working, I am assuming that every pain, cramp etc. is a sign that these tumors are in way over their heads.

Dave and I are so grateful for the outpouring of love and support that we have received from everyone.  There are no words to explain how comforting it is to know that while we struggle with difficult decisions and difficult tests and treatment options, so many of you are struggling right there with us.

I am slowly but surely starting to come a bit out of my cave.  For the first week I really didn’t want to speak to anyone because I was so raw and sensitive.  Now, I find that I am enjoying emails much more and a mention of a phone call or visit doesn’t make me run the other way.  Hopefully I will feel a bit better soon, and we can make those things happen.

In an effort to help you all continue to be as wonderful as you have been, I wanted to share some things with you as clarification and/or advice.

• I am following a fairly strict diet right now.  Major digestive challenges from 6+ abdominal surgeries coupled with the anti-cancer/inflammation diet that I am roughly trying to follow have made me pretty strict about what I put in my mouth.  Basically I avoid raw vegetables (I can only digest veggies that are cooked or roasted) and I don’t eat meat (red or white) or dairy products.  I am also trying the best I can to replace white products (sugar, bread, pasta) with higher-grain products (quinoa, wheat bread, whole grain pasta etc) when my stomach can digest them.  So, thank you for your kind offers to bring me ice cream, brownies etc but the reality is that I am rarely eating anything like this.

• I really don’t want to talk about it. I lay everything on the line on my blog.  I do this so that when I see you or get a phone call or email you DON’T have to ask me how I am doing or ask questions about my situation. Dave and I have no choice but to talk about it with so many doctors every day.  The real gift you can give me is to help me take my mind off of this.  If I want to talk about it with you, I will.  But for now, if you ask me questions, I will likely ignore you or respond, “read the blog!”  To be clear, this doesn’t mean that you should go the other way and be so carefree in your voicemails that we truly don’t think you know what’s going on.  There’s a way to be compassionate and supportive of our desires to not focus on the topic simultaneously.  Thanks for understanding.

• My cancer never left, it has stopped responding to the last treatment.  A fair number of people have been emailing us saying that they are so sorry that we don’t have a longer “respite” between treatments or that they are sorry the cancer has returned.  Just to be factual, I have not been free of disease since early 2010.  I have been actively on treatment.  When things were really dire in the fall, we were grateful to finally find a treatment option that seemed to start working incredibly well.  So, I started to look better and feel better because the tumors started to shrink.  BUT I was not free of disease and they were still fairly large.  Now that they are growing again, we have to attack them quickly and aggressively so I don’t go back to that tough time.

On a last note, thanks to my Duke friends for always keeping it real.  While most blog readers enjoyed my retelling of the famed US vs. Russia Olympic game, many challenged me with taunts like, “And you call yourself a Blue Devil?!?”  Yes, I am sorry to not mention that on par with the Olympic miracle was Duke’s win in the 1992 East Regional Finals of the NCAA that put Duke in the Final 4.  With 2.1 seconds remaining in overtime, Duke trailed 103-102.  Grant Hill threw a pass the length of the court to Christian Laettner, who dribbled once, turned, and hit a jumper as time expired for the 104-103 win. My favorite part of this video is to see Thomas Hill’s reaction after the shot.  He is so overcome with emotion;  he doesn’t even know who to turn to.  I feel like saying “Watch out tumors, here comes Jen!”

I will plan on updating more often assuming I start to feel better and so appreciate your love and concern.  They say it takes a village to cure this disease …we are lucky that we have an army!

I’m not sure if I believe in God but I do believe that most things happen for a reason. For instance, I always think that it makes sense that I got really sick in the fall right after my family was able to enjoy a lovely week at our rented beach house in Long Beach Island.

It was as if some greater power wanted to give me that wonderful experience knowing that I would look back and cherish it often in the dark times ahead.

While I was in Arizona the last two weeks I couldn’t help but feel like that chain of events was about to happen again; that I was given this wonderful two weeks of R&R, healthy eating and exercise to prepare me for the tough battle ahead. I knew that I had my six-week CT scan the day I returned and I tried to convince myself that the bloated feeling in my belly and my slight potbelly was just because I was getting strong again and gaining weight (I am back to 112 lbs…a full 15 lbs heaver than when I was at my low point which is great!)

As my doctors have said all along, “You know your body better than anybody Jen, you’re often the first one to know that your tumors are growing before we even administer a scan.” Well, unfortunately they are right. My tests showed that although my heart is handling the toxic chemo amazingly well, it doesn’t matter because this chemo regimen is no longer working. After a few months of miraculous results, my tumor cells seem to have become resistant to the chemotherapy and we need to find another treatment plan.

It’s really ironic given that the last month I increased my exercise routine, enhanced the ability to control my stress levels and more strictly followed the anti-cancer diet that I am subscribing to. Well, we’ve all known that this disease doesn’t discriminate. And it would be wrong to say that Dave and I were not fully aware that this moment would come at some point. Yes, we believe in miracles, but given my medical history we knew that the chemo would likely only work for so long and we would have to try something else.

We are consulting with the best doctors in NY, Chicago and Boston and we will hopefully have a plan in place by next week. It never gets easy hearing the best in the business tell you that “you’re in a very tough spot” and “at this point we are grasping at straws”. That being said, we do believe in miracles. Given this medical setback, we are handling things as best as we can. There were two moments during the meeting with my Doctor that I had a hard time containing my emotions:

• The first was when my Doctor gave me a huge hug and said that he didn’t sleep last night because he was so sad that he had to deliver this news to me and he was thinking of what treatments we might be able to try. I love my doctor very much (as a person and as a doctor) and it is hard to hear someone you respect so much tell you how sad he is about this latest news.

• The other was when we started to discuss various medical options and Dave pulled out extensive files that he had created that summarized all of the research he has been doing over the past 5 months. While I often find that I can’t take on more than what’s right in front of me, I am extremely grateful that I have a caregiver who has the foresight, focus and skill to research the road ahead. I was overcome with love for Dave and for all that he has done to try to buy me more time. 

Dave and I make a point of not outwardly showing our emotions at the clinic. We do this because we have no idea what news other patients are getting and we are respectful of their feelings. Celebrating or showing sadness are not responsible behaviors when there are so many others there. Dave looked at me at the end of the meeting and said, “How are you doing?” and I said, “I don’t want to cry until we get out of the office”. The minute we left the office, tears started pouring down my face. I was, and continue to be filled with sadness, anger and frustration. This disease truly doesn’t discriminate and I feel like I have done everything within my power to heal myself. And I’m not sure if it matters anymore.

Please don’t take this as any sign that we are giving up…I NEVER WILL. It’s just that it’s hard when you feel that your prayers are not being answered. As in the past, I often need a few days or a week to grieve and then I am prepared for the battle ahead. This is the hardest part because we don’t yet have a plan in place. Hopefully we will shortly and I will share what I know with you.

For now, we are trying to use our experience over the past year to inform what might be ahead rather than dictate what will be. I am terrified to start feeling like I did a few months ago when I was in so much pain that I couldn’t walk, couldn’t eat and couldn’t sleep. We are truly hoping that we don’t get to that place again and that there will be another option that will help me.

Please understand that we don’t feel like talking because we are drained and there’s really nothing to say. We appreciate, as always, your responses to my blog, emails and voicemails. Thank you. We ask that you continue to help us keep life “normal”. If we need your help with something, please know we will ask. For now, we just need your well wishes, prayers and support.

I am hoping that the fact that we found out this news right before the Jewish holiday of Passover bears some significance. A friend of mine wrote to me and said, “It’s not that I’m so religious, but I was literally at a text study last night about Passover and the plague of darkness came up. It was interesting to me that night comes before day (as all Jewish holidays start in the evening). In fact, in order for their to be light (or for us to feel the light within each of us) you must begin in a place of darkness. It is only through despair that real freedom presents itself and so in the spirit of Pesach, may this darkness (the bad news you recently received) be brief and give way to the freedom you deserve (free from this cancer that is literally plaguing you!).” I am not religious either but I liked that analogy.

Please encourage people to sign up and read my blog. I have added automatic updates to my blog so now you will receive an email when I write a new blog entry and can opt in if you’d like to.

I thought I would close with the imagery that keeps on popping into my head this weekend. In 1980, Team USA does the improbable and beats the mighty Russians in the hockey semifinal of the Lake Placid Olympics. Al Michaels makes one of the most famous sporting calls ever to end the game.

Dave and I believe in miracles and we know all of you do too.

‘

As you all know, I am a real ocean girl. However, the one thing I love more than the ocean is the sun…and you can never have too much of it in the desert. I have always loved Arizona and view it as a place of real healing. The dry air always makes me feel so much better.

We had a Linn Family Bar Mitzvah to attend last week so Dave’s family rented a beautiful home in Scottsdale for the week. We had such a nice time together. We celebrated my 40th in style with a special spa day for the “girls” (my mother-in-law and sisters-in-law) and a very nice dinner. I also got to spend a special day with my friend Kristin at my favorite spa of all time…The Golden Door Spa at Boulders.

I have decided to stay another week to focus on “rehabbing”. I am spending a lot of time swimming, eating well and spa-ing. It has been truly delightful. A much needed time of reflection. I am truly starting to “embrace” the new me and all of the good and bad that comes with it (I am alive = yes! My body is still so weak – no!”)

I really can’t complain as I am so happy to have made it here. When I was sick, thoughts of getting to Arizona are what would often cheer me up.

You know life is good when your biggest decision of the day is:

Sun or Shade?

Scrub or Massage?

Pool or Hot Tub?

Steam Room or Sauna?

Smoothie or Pina Colada?

Rather than view this as a vacation, I am viewing it as a “change of scenery”. I am preparing many of the outlines for my speaking engagements in the coming weeks. I am very excited to be speaking at the American Airlines Women in Aviation Conference as well as at New York University and as part of Labaton Sucherow’s Women’s Initiative.

I had really hoped to spend a month or two in Arizona to focus on my healing but right now my treatments prohibit me from doing so (or, I should say, from feeling comfortable doing so). I am hoping that I can get to a better place health-wise and perhaps spend a few more weeks/month here in October when we are back for yet another Linn family Bar Mitzvah!

I have truly maximized the length of my stay. I return on Tuesday the 12th to spend all day Wednesday in the hospital with blood tests and my 6 week scans. On Thursday I receive the results and, assuming all is headed in the right direction, I have chemo that day. I am hoping that my tumors are dying due to my lack of stress in the desert and that I will get great reports back!

It’s ironic that right after I had the privilege of celebrating the gift of life and turning 40, my dear friend lost her battle at the way-too-young age of 25.

Alyssa and I met through my doctor at 2010’s Cycle for Survival. My doctor who rarely gets effusive about anything said to me, “You must meet an extremely special person.” That was the understatement of the year.

Alyssa was the most positive person I have ever met. Despite dealing with an extremely aggressive form of cancer near her heart, she never, ever gave up hope.

Her two last Facebook posts are symbolic of that optimism and cheer.

March 3rd – “Bad things are like waves. They’re going to happen to you, and there’s nothing you can do about it. They’re part of life, like waves are a part of the ocean. If you’re standing on the shoreline, you don’t know when the waves are coming. But they’ll come. You gotta make sure you get back to the surface, after every wave.”

March 1st – “Anything is possible. You can be told that you have a 90-percent chance or a 50-percent chance or a 1-percent chance, but you have to believe, and you have to fight.”

Although Alyssa was 15 years younger than me, I learned so much from her. She was a hero to me; someone who approached this dreadful disease with grace, dignity and passion.

Alyssa jumped into Cycle for Survival wholeheartedly. She had multiple teams celebrating her battle (aptly called Mission Cure Possible and Alyssa’s Army) and she joked with me this year that despite not feeling great, she was going for the Cycle “Trifecta” attending the NYC, Long Island and Chicago events.

Alyssa had a wonderful support network of friends and family members who never left her side. She was SO LOVED. When I would visit her in the hospital (we would often be there at the same time), there was no room to sit on her bed because all of her friends were camped out there. It reminded me of when I was a little girl and I would sleep with hundreds of my stuffed animals. She was like a celebrity…people would “wait in line” to talk with her knowing that just a few minutes with her would change your life for the better.

And her sense of humor, despite these challenges, never left her. She joked to me once that she now understood that she got cancer because it was “meant to be” that she would meet one of the MSKCC oncologists who happened to be young and good looking. She joked after open heart surgery that she is one of the few people in the world who can say that she literally has had her heart broken, If I ever got bad news about my disease, Alyssa was the one to call. She would cheer you up.

Alyssa and I talked often about our mortality. We both were not scared of dying but rather were terrified of the process of dying. We valued the quality of our lives way too much to consider that we might have to suffer in pain for months. The silver lining on this awful cloud is that Alyssa didn’t suffer for long at all. She started to feel weak last week and five days later passed on. For this I am grateful. Although her death is just an exclamation point to the realization that cancer is a disease that doesn’t discriminate and can take anyone from us, no matter their positivity or their willingness to live.

A fellow patient and friend Corrie said it best, “I am infinitely better for knowing her and will try to incorporate her unique ability to shine into every moment of my life and in that way, I hope to honor her. And as we fight, I will always know that Alyssa has her fingerprints all over the dagger that we’re lodging into the heart of this beast.”

Alyssa’s favorite quote was from Ralph Waldo Emerson: To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and endure the betrayal of false friends; to appreciate beauty, to find the best in others; to know even one life has breathed easier because you have lived. This is to have succeeded. 

Alyssa, you have succeeded in more ways than you know.

I am the happiest person in the world to be turning 40!

A few months ago, I wouldn’t have believed you if you said I would be alive for this milestone (neither would my doctors!). I am extremely blessed and grateful to be alive for this momentous occasion!

In honor of this special day I had a very special dinner with my nearest and dearest friends and will be getting a LONG massage and another special dinner with Dave tomorrow.

And back by popular demand, another dance video!! This is my Wahoo I’m 40! Celebration Dance. I hope you enjoy it and if you’d like to celebrate with me, here’s a short playlist of songs that will definitely make you get up and groove!

1. Wow – Kylie Minogue
2. Breathe Life – Radboy Vocal House
3. I’ve Got a Feeling I’m Doing Fine – Black Eyed Peas and Mary J. Blige
4. Raise a Glass – P!nk
5. She’s Got Me Dancing – Tommy Sparks
6. Somebody to Love – Justin Bieber featuring Usher
7. Sweetest Girl (Dollar Bill) – Wyclef Jean
8. Forever – Chris Brown
9. Party in the the U.S.A. – Miley Cyrus
10. Evacuate the Dance Floor – Cascada
11. Holiday – Madonna
12. All Nite – Janet Jackson
13. Watch the Sunrise – Axwell
14. Down featuring Lil Wayne – Jay Sean
15. Dollhouse (Jason Nevins Mix) – Priscilla Renea