To be fearless is to face life head on, to embrace each moment without worrying about what the next one will bring. The people who spoke at Jen’s service honored Jen's fearless spirit by emulating it– speaking honestly, with raw emotion and without hesitation or fear. The eulogies from that day offered heartfelt words to help us all celebrate the beauty of Jen’s life and the lessons she taught us, lessons we will all hopefully carry with us as we too aspire to be maybe just a little more fearless.
Some people have asked to spend time with those words, and so we offer them here. Below you will find links to the eulogies that were offered by people who so clearly loved Jen. In addition, there are also links to obituaries written about Jen in various print and online media.
Whether you were at the service to hear the words in person or you read them here, it is clear that the emotions behind them are powerful. One over-arching theme is Jen's unstoppable zeal for life and her commitment to make the world a better place, something we all witnessed.
Knowing Jen, you will probably not be surprised by her ability to deliver on her ambitions. Jen set goals for herself and she achieved them.
During the service, Jen’s rabbi since childhood, Rabbi Peter Kasdan, reflected on their mutual relationship as student and teacher. In his remarks, Rabbi Kasdan remembered a list of goals Jen wrote to prepare for her wedding day, entitled “What I Want Out of Life”:
1. To feel like I have made a positive change in people’s lives.
2. To find the right balance between family and career.
3. To never stop dreaming – and traveling -and learning – and striving for new levels of happiness and success.
4. To know that I am loved and make sure that others know how much I love them.
5. To never look back and say, “I wish I did that!”
After reflecting on the deep love and incredible stories that were shared at the service in the words below, there is no doubt that Jen would check the box for each one of these goals…again and again.
As you are all aware, Jen's funeral is tomorrow and we wanted to give you some insight into Jen's last wishes regarding honoring her memory. Jen believed "life was for the living." She wanted her funeral and any other memorials to be as much of a celebration of her life as possible. In fact, she even wrote of possibly wanting a "dance party!" In that vein, please feel free to smile and laugh as you recall special memories of Jen and please dress however you like. Jen would have loved there to be some color in the room and not have everyone dressed in all black!
As much as Jen wanted her memorial to be upbeat, she was respectful, however, that everyone mourns in their own way and that there was no "right" way to do so. Please help us honor Jen and her legacy in whatever way you see fit.
We have cherished reading the tributes written here and on Facebook. Please continue to contribute memories, thoughts and wishes. Those who love Jen have already taken great comfort in your kind words.
It is with great sadness that we want to inform all of you who have supported and loved Jen throughout the years that she passed away earlier this morning. As tough as a fighter as Jen was, her death was peaceful and she did not seem to be suffering; she was surrounded by loved ones. Obviously this is tragic and heartbreaking for all of us, but we are grateful that she is no longer in pain.
Jen’s funeral will be held at Riverside Memorial Chapel, located at 180 West 76th Street (near Amsterdam Avenue) at 11:45 a.m., Friday, July 22nd, 2011. In lieu of flowers, Jen preferred that you please consider donations to Cycle for Survival (www.cycleforsurvival.org) to keep alive her determined fight to eradicate rare cancers.
The last 10 days or so have been extremely busy and tiring so I apologize for the lack of correspondence. The blog is THE first place we go to in order to update info so if you don’t hear from us, chances are we are overwhelmed with all that is going on. So, please don’t email us to ask us what’s going on since you haven’t heard anything on the blog. There is likely a reason and we will get to you as soon as we can.
The overview is that medically I am having a tough time but we are doing all that we can to keep our heads high and make my pain and discomfort as manageable as possible.
We knew the Switzerland treatment would be toxic to my body and it has been. Nothing to be alarmed about but my platelets are extremely low and I needed to get a transfusion the other day (a HUGE thank you to Kat for taking me to my appointments for the day…I owe you a fun day versus an 8 hour hospital day!). I am also exhibiting low sodium and other blood markers so I have been put on a variety of drugs to manage that condition.
Dave and I are meeting with my herbal oncologist this coming week to see what supplements might be able to assist me in getting my blood work up a bit.
The big issue is the swelling in my lower body (similar to last winter). I have gained around 45 pounds of water weight which makes it extremely hard to walk around. None of my clothes fit and I am getting very bad blisters on my feet.
We got a hospital bed installed in our bedroom which has been great in terms of offering ways for me to raise my upper body and lower my body during the evening. I also have a variety of gadgets now that help me get in and out of a car (very hard) and put on some of my clothes.
I hate being so dependent on others but that is the situation I am in so I am making the most of it.
When I am feeling up to it, we still manage to make social plans. We invited our dear friends Dan and So Young back to the NY area from Los Angeles (we are so happy to have them on the east coast again).
Yesterday was a very special day in that we visited dear friends Todd and Sharon in Scarsdale (with our friends Matt and Sharon who live down the road). We had a great BBQ and even though it is hard for me to eat much these days, I LOVED being in the water and the sun.
Swimming is my favorite thing to do right now. If I could live in the water I would because it is the ONLY place that I feel a bit less heavy. Being able to “plop” myself in their pool on a gorgeous, sunny day was such a gift.
My friend Emily has also generously offered me the use of her house and I plan on using it on a weekly basis starting this week (THANK YOU!)
Please understand that Dave and I love the emails but likely will not return your kind thoughts. We know you love us and right now we have to focus on my health. I will update again as soon as I have some time and am feeling OK.
We can feel your love wherever we are and we are grateful for that.
I am going through so many feelings and emotions that there are many times that I wish I had time to sit down and write this earlier. First, let me address two things that my “avid” fan base has been asking about!
Dave was NOT naked as he floated down the Rhine (maybe I should be asking why so many of you are curious!?!?). Many people show up wearing bathing suits or athletic shorts and just put the rest of their clothing in the orange bag. Dave did however see two 70-year old men have a merry old time sunbathing naked on the way down so I guess anything goes!
Although my diet restricted me from indulging, the chocolate in Switzerland looked fantastic and Dave served as a good taste tester to many of the flavors. Many brands were those you have seen in the states like Toblerone or Lindt but Dave and I did find this store called Laderach that sold over 20 different types of unique “barks” of chocolate that was so unique. Dave’s favorite was a white chocolate infused with blackberry and strawberry. I was jealous I could not partake.
Now on to the rest of the week…
My treatment ended on Wednesday uneventfully. The Dr. said that the scans revealed that my body did experience some “uptake” of the radioactive shot and it seemed like it was positively dispersed throughout my belly which is good. However, the uptake was not “off the charts” (which we knew was likely). We are scheduled to go back in 8 weeks for treatment #2 provided I start to feel better, my blood work and platelet levels bounce back (this treatment is very toxic and takes time) and the scans I most likely will get in 4 weeks show some signs of improvement.
I had underestimated how lonely it was to be partially quarantined for 3 days and to be isolated from people. I had a bit of “cabin fever” by the end of treatment and was a bit depressed and couldn’t wait to leave.
The next few days we spent recovering and seeing good friends Nick and Erica who visited from Milan. We also went to the oldest zoo in Switzerland which was really wonderful (who knew a small zoo could have almost every animal imaginable like bears, kangaroos, lions, cheetahs and elephants).
I have a beautiful story I want to share: Dave and I left the zoo and there was a fairly steep, long hill we had to climb to get to the tram station. I looked at Dave and we both knew that it would take me way too much effort to make it. So, we started to look for a cab. A man named Christopher picked us up. He was very exuberant and thought I needed to go to the hospital to have a baby (lovely). We explained our situation to him and not only did he drive us back to the hotel at no cost, he drove us to the airport the next day and refused to take a tip. He gave us his card and email and encouraged us to please reach out to him when we were back and he would escort us anywhere we needed to go. A great example of how a small act of kindness on his part, went such a long way in lifting our spirits. Pay it forward people!
Although we did get around a bit, it took some time to get my pain management under control and I had a fairly miserable few days. There were moments when I was in really poor spirits. We increased my pain dosage and I started to feel much better. Unfortunately however, the pain meds dull the swelling but don’t eliminate it and it was very hard for me to get around.
I had a fair amount of anxiety flying home because I was concerned the plane pressure would produce even more swelling and discomfort. I took a lot of painkillers and we ordered wheelchairs to take me to our transfers in Heathrow and to pick me up when we arrived in JFK. Although it made me very sad to have to be in a wheelchair, it made all of the difference. With the exception of having a bit of a “detour” when I set off the custom’s officers devices for being radioactive, we made it home in good shape.
The past few days have been spent wrapping up loose ends and trying to make the house as comfortable for me as possible. We have someone helping to install bathroom bars to help get me in and out of the shower and we are considering getting a hospital bed installed in our bedroom so that it is easy for me to keep my legs elevated and my back comfortable when I sleep at night.
Because I am carrying so much weight, it is very hard to lift my legs more than a few inches so we are back to having Dave help dress me in the mornings. I remain very focused on ridding myself of this disease. And, as a typically very active person, I can’t tell you how hard it is for me to see my body physically degenerate like this so quickly. There are moments when I start crying because I am just so aggravated that I can’t do things on my own and I need someone’s help to do simple tasks.
We saw a miracle happen this past winter and we are just hoping for another one.
Because I know that whoever reads this blog really cares about me and making me feel good and keeping my spirits high, I just wanted to share a few quick things with you.
Many of these were in The The New York Times article my friend published a few weeks ago or I have brought them up in the past but I wanted to summarize again.
Telling me “I look so good” doesn’t make me feel better. Let’s be clear: I know I look good. I am fortunate in that I am not one of those people who gets very pale when I am sick and I spend time and energy trying to put on make-up and get dressed in today’s styles because it makes me feel good. However, looking good has NOTHING to do with my medical odds or my ability to get better. So, when you say this to me, it comes across as a shallow, vanity comment that is truly irrelevant to the severity of my situation at hand. Perhaps it consoles you (“if she looks good, she can’t be that sick”) but it does nothing for me. So, let’s agree that I look good and move on.
Just as I don’t want to surround myself with Debbie Downers, I also don’t want to be around Debbie Uppers. What do I mean by this? Over the years so many people have said things to me like, “Don’t worry you’ll be OK,” or “With your positive energy, I have no doubt you’ll beat this thing”. Well, unless you have a crystal ball, please stop saying these empty platitudes. We all know this disease is random and that although being an advocate for your disease helps, you can never guarantee what will happen. Again, if you need to tell yourself this to make you feel better about my odds, then do it in the privacy of your own thoughts. When you’re with me, please just be a good listener and help me absorb the reality of the situation while understanding that I am not giving up.
It’s hard to believe that in less than 36 hours from receiving the call that the University Hospital in Basel could take us for this radioactive treatment, Dave and I were on a plane packed and ready to go (with all of my medications and snacks just in case
We were able to use mileage credit and fly business class which made a huge difference given my swelling. We had a short 90-minute layover in Heathrow, which was fine, and we arrived on time.
Although the flight was uneventful, it was one of the toughest things I had to manage physically and mentally since this past winter. We were so concerned about a serious blood clot from the pressure of the plane that we made sure that I walked around every 45 minutes and constantly elevated my legs. This was made MUCH easier having the luxury of flying business class but it meant that I got little to no sleep. I also didn’t take off my sneakers the entire flight because I was concerned I wouldn’t be able to get them back on.
By the time we arrived in Basel, I was completely exhausted and, as a result, was even more immobile than normal. I had a tremendously tough time walking and it took me a LONG time to get down a flight of stairs. I had a moment of real doubt…how am I going to possibly do this?!? While I was so happy that we arrived, I immediately thought about the fear of getting back home to do it again. But when that comes next week, I will be sure to make it happen. I often have to remind myself, “day by day” as well…)
Basel is an adorable little town, and our hotel is right on the River Rheine so it is very picturesque. Of course, Dave and I had to laugh when we arrived in our room (which faces the main drag) — as we were trying to nap because I was beyond exhausted and in pain, a parade went by. I looked at Dave and said, “thank goodness NY noise prepared us for things like this,” and I promptly fell asleep. We woke up a few hours later, and I felt good enough to go on about a 10-minute walk with Dave around the river.
We had a very nice meal overlooking the water, and I was thoroughly amused by all of these “swimmers” who put all of their clothes and valuables in a “river balloon” sold by the local merchants and float with the current of the Rheine. It looked like a great ride (picture attached) and I told Dave that if we are fortunate to come back here down the road when I am in better shape, I definitely want to do this. (Author’s Note: While I was in quarantine Dave got to do this and he loved it! I was so happy he got to experience it.)
We woke up on Monday and headed to the University Hospital located only about a 10-minute walk over the bridge. The 3-day program is well-documented so there was little for us to do but to get a schedule and check in to my room.
My room is really great. I have a private room, which is awesome (apparently there are 7 of us weekly sharing 6 rooms so I feel bad for the last man out). It is very large with its own bathroom and vanity area and huge windows that overlook a courtyard. One day that courtyard will be very nice, but right now it is under construction. Still, the weather has been very sunny (and hot!) and it’s nice to look outside since I tend to be basically quarantined for the majority of time I am here. In some ways it's "nicer" than a hospital in that there are 3 nurses that look over the 7 of us and I have gotten to know them very well. There are no "announcements" through a PA system and they basically leave me alone unless they need me and they don't have to wake me up and take my vital signs every 4 hours. I am finding it very quiet and peaceful which is nice.
We spent the day on Monday with medical tests, Dr’s questions, and being infused with a bunch of liquid medications that prevent the radioactive shot from giving you too many side effects, affecting your kidneys, etc. Then I received a radioactive infusion (only about 5 minutes) yesterday afternoon. From that point on, I am supposed to not get within 5-10 feet from anyone for about 36 hours and from children or pregnant women for about a week.
All day today I sit around and get tests 2-3 times to make sure my kidneys aren’t damaged from the treatment, and also to get a sense of whether the radioactive fluid is finding the receptors in my tumors and “attaching” to them. While we know the “uptake” won’t be tremendously high (my tests before we came here showed that I tested somewhat positive but not overly positive), we are hoping that we see promising results. We will continue to pursue results through scans in the U.S. and if we start to see improvement, my understanding is that I would be coming back here for another cycle of treatment in 8-10 weeks.
We do some more scans and tests tomorrow, and then they let me go. On the whole, besides exhaustion (which I feel is just as likely from the jet lag and the heat here), I am feeling pretty good. Dave and I are staying in Basel until Saturday AM to make sure I feel OK and get a bit more acclimated before I am thrown back into the jetlag again.
We have good friends who used to be our next-door neighbors in NYC. They moved back to Italy after a two-year stint, and we miss them so much. They do manage to visit 1-2x a year back to the city and we always see them then. But, due to my health, we have never been able to come to their neck of the woods. Well, they have graciously agreed to make the 4 hour journey to see us later this week so, fingers crossed, we will spend some QT with friends.
This just goes to show you that we are BLESSED by having such wonderful friends all over the globe. Thank you to all of you for sending sweet notes, dropping off snacks and giving us well wishes before we left.
You guys were fast…we had a huge support force gathered in less than 36 hours! And a special thank you to Jackie, Justine, Tina and Janet who donned bathing suits and swimming caps to attend my favorite aqua boot camp class with me on Saturday AM before I headed out. It is real mental and physical therapy for me and it meant the world to have fun friends there (who thought they were doing me a favor, not knowing they would get their butts kicked as well!)
Lastly, the Cycle for Survival Team made a wonderful “feel good” video for me that I have to post. I told them that I am doing my best to continue “Staying Alive” here, and they responded with a FANTASTIC rap involving the entire team. It just shows you that the charity we are all involved in has the most wonderful, loyal, caring supportive people at its core. And that makes all of the difference!
I will check back in later in the week. Much love, Jen and Dave
This week has been a very challenging one for me physically. The swelling continues to intensify and I am having a very hard time getting around. I have gained about 18 pounds of water weight in the last two weeks. I am in a fair amount of discomfort and have started on a pain management plan that is helping out a lot.
While we were really hoping that this Boston trial was going to do wonders, and we also understood that it might take at least a few weeks to see any results, Dave and I were having a hard time believing that it was helping at all given my debilitated state.
We spoke with my doctor in Boston and visited MSKCC yesterday and everyone confirmed that we needed to try something else rather than continue with this trial (at least for now).
For a while we have been optimistic about a treatment therapy in Switzerland and the Netherlands that is only available in trial form in the United States. Given that the demand is high and the facilities are small, we had locked in a July 18th start date in case the Boston trial didn’t work.
Unfortunately the facilities wouldn’t budge on moving this date. So, we spent a lot of time at MSKCC yesterday discussing “What do we do for the next 3.5 weeks to keep Jen comfortable and to keep the tumors at bay until we can get her to Switzerland?” None of the options were very promising at all.
So, I took it as a true blessing when I was awoken at 3AM this morning with a call from Basel, Switzerland telling us that an opening became available for this coming Monday (for the first time, I’m happy that Dave and I hadn’t turned our phones off).
So, we are off to Switzerland tomorrow evening for a week and will return during the July 4th weekend. To greatly summarize the procedure, it delivers radioactive treatment through your vein directly to certain receptors for which my tumor has tested positive.
We are optimistic about this. And frankly, we are too tired and too busy trying to book flights, get hotels and pack to think about anything.
I will be in the hospital in Basel for about 3 days and then spend a few days recuperating in the hotel before we head home. It is a long-acting treatment so if my tumor responds to it, it will require us to return about every 10 weeks. We will do scans in NY to monitor things in the meantime.
When we weren’t busy dealing with my health this week, we did manage to have a few special moments. I had a wonderful dinner with my close friends from Harvard Business School who were in my study group. Dave and I also had a fantastic dinner with our friends Katie and Zeev.
Please continue to think positive thoughts for us. We are in a very tough situation and now, more than ever, we need another miracle like we had this past winter.
I will plan on updating my blog in Switzerland and please post on my blog as it will be nice to hear thoughts from “across the pond.” And emails are great just please don't expect a response. I have no idea what type of side effects will accompany this latest treatment.
Dave and I will be using this blog as the focal point of all communication going forward so please, if you haven't already done so, click on the purple "box" at the top of the blog page and follow the procedure that will make sure you receive an auto-alert every time we write a new post (you will need to respond to a confirmation email in order to know that your enrollment was successful).
Hi Everyone! The last week has been a long, trying one but there were definitely some highlights to make me smile.
I finished the chemo infusion last Saturday and felt good enough on Sunday to go watch Dave play in the NY State Cup for his soccer division. It was a huge accomplishment for Dave’s team to make it to the final game. Although he doesn’t like to admit it, Dave is the “old guy” on the team so even more impressive that he played the full 90 minutes for many of the games leading up to the Championship. We were able to get a great crowd of dear friends (the Rippergers, Matt Adam and Jamie Spielman, Todd and Zack Kristol and Janet Balis) to come watch the game. We had a great time watching Dave’s Team, The Manhattan Celtic, win 2-0!
So, beyond the fact that I was swelling a lot, I was feeling pretty good.
Then, I woke up on Monday and felt like a train had hit me. In all 7 years of dealing with this nonsense, I have NEVER had fatigue like I did on Monday. I felt like I weighed about 1000 pounds and literally could not get out of bed without a tremendous amount of effort. In fact, I was too tired to even watch television or read a book so I just laid in bed for most of the day staring at the wall. My muscles were so sore to the touch, my throat was throbbing and I was very miserable.
I called the nurses who believed that I was experiencing a bit of “steroid withdrawal.” They give you so many drugs to feel OK when you’re getting the chemo and immediately afterwards that sometimes you “crash” afterwards.
So, I have been spending A LOT of time in bed this week.
The nurses tell me that if I don’t “give in” to the fatigue, it will hurt me later so, although I am not good at this, I am trying to “embrace the lethargy.”
Tuesday and Wednesday were relatively better but I was still so, so tired. We did manage to have a nice dinner with Kat and Rob Olin and on Wednesday, we had tickets to go see the much-acclaimed Broadway Show, The Book of Mormon. There was no way I was missing this so I took some painkillers (heaven) and went to the show. We truly enjoyed it. I felt so grateful to be able to go on a “date” with Dave. The show was really funny but I think the fact that I was able to get there meant more than anything.
I have been feeling a bit better these past few days but I am still in my “low period” which means I need to be very careful with germs and take it easy. I tend to sleep 10+ hours a night and take daily naps. And, the swelling has gotten pretty challenging so I need to elevate my feet for many hours a day (thank goodness for my zero-gravity chair!)
Just today, I received a lovely gift from many of you and I wanted to express my thanks. Good friends Carolyn, Janet and Tina visited my house (and Matt called in) to present me with a “love scrapbook” that I will always treasure. So many of you contributed to the book and expressed your love and admiration for Dave and me through pictures, poems, children’s drawings etc. I haven’t gotten through even a fraction of it yet but there are no words to express how happy I am to have this book in my possession.
Although we keep our heads high and are hoping for the best, weeks like this can be very trying on us mentally and physically. Whether or not we are able to see you or email with you or talk to you, it means so much to feel your love behind us. Your friendship truly “powers” us to keep going. Thank you for being such a constant support to us.
Here’s to what I hope is a better week ahead. I will report back soon.
Dave and I decided to start the clinical trial in Boston through Dana Farber Cancer Center. We went up on Tuesday and just returned late last night. I was very concerned leading up to our trip because my bloodwork had to hit certain criteria and it was borderline. Given how few options we have left to try, I would have been devastated if we were not able to take advantage of this trial. Thankfully, they got back in line by the time we arrived in Boston and we were approved for the trial on Wednesday morning. I will still need to be approved every 3 weeks but I was thrilled to be able to start on the earliest day possible (3 weeks post my last regimen).
Dana Farber is a beautiful cancer facility and although it’s a bit inconvenient to travel the 4 hours every 3 weeks, it is a small price to pay if this drug works. The trial I am on is a 24 hour chemo infusion. They connect the chemo drug through my port (located on my chest) and I leave with a “shoulder bag” device that delivers the chemo continuously for 24 hours. I sleep with it, eat with…only thing I can't do is get it wet. It's kind of like that "egg" that you had to carry around in high school sex-ed class for a few days and you really couldn't wait to get rid of it. We go home and the next day, I have the device removed at Memorial Sloan-Kettering in NY and shipped back to Boston.
So, going forward, we won’t have to be in Boston for more than 1 night every 3 weeks unless we choose to stay for longer. The Dana Farber folks could not have made us feel more welcome. Sharon and Matt's brother Steve is a cardiologist at the sister medical center and he came to greet us at 7:30AM with deliciously decadent pastries (hey, it's OK to eat doughnuts if they are given to you by a cardiologist, right?) The sarcoma oncologist who is overseeing this trial, Dr. Andrew Wagner, has been a member of “Team Jen” for the past 6 months. We visited him this past winter when I was in bad shape and he helped develop the chemo plan that greatly improved my health from November-April. So, I like him!
And if you needed any more proof that social media is pervasive, Dr. Wagner told me that at least 3 people had forwarded him the “40th celebration” birthday video that I posted on my blog. I told him that if this drug worked (yondelis/trabectidin), I would make him his own celebration video. So, fingers crossed, I get to make a fool of myself in the coming weeks!
Dave and I are feeling very good about this treatment. We finally got a car a few weeks ago (can you believe that I have never owned a car in all of my 40 years?!?) and that provides great flexibility for us to drive back and forth to Boston. And we heard some great songs on the radio that we believe were good omens for my tumors – in particular, Queen’s Another One Bites the Dust! Take that tumors!
The great thing about Boston is that we have near and dear friends who live there. Dave and I were determined to make this trip more of an adventure/vacation than a medical burden. We could not believe that with only a three day notice, so many of our friends were able to find babysitters and juggle their busy calendars to meet us. On Wednesday night we had a really special dinner with the Northwestern gang and their significant others. Dave and I are constantly reminded of just how incredibly supportive and loving Dan, Sorrell, Sarah, Dave, Tom, Jen, Chris and Anne are. We were so, so happy to see you all! And on Thursday I got to have a special ladies' lunch with Michelle and Cindy who ALWAYS find the time to come see me when I am in Boston despite 6 kids between them! And a really nice perk was that Dave’s brother Eric was in town for a conference so we got to spend some time with him as well.
It was 97 degrees so I decided to stay at the hotel but Eric and Dave attended the Scooper Bowl, an annual ice-cream-a-thon that benefits The Jimmy Fund and Dana Farber Cancer Center. I sent them on their way telling them that they must eat a lot since that is where we are getting our trial. I think they did their part!
I am feeling OK. Unfortunately I feel like my tumors have grown this past week without chemo and my stomach has grown. Swelling has also become more of an issue this week. Two people congratulated me on being pregnant this week but I am taking it in stride (it’s not their fault, I do look about 4-5 months pregnant). I need to keep my legs elevated most of the day if I am not walking or doing some sort of activity to hope that it doesn’t get worse. Thank goodness for my zero-gravity chair!
The treatment went by without a hitch but I am told that the next week or so could be fairly tough. I am taking a lot of steroids and anti-nausea medicine so I’m warning you now…I might be cranky and aggressive! I apologize in advance.
As you know, the only way I know how to live is day by day. And that is what I am doing. Despite all of this medical annoyance, I am making great strides on my book, I Know You Mean Well BUT… and the pitch document should be ready in a few weeks to send to publishers and editors so please let me know if you know of anyone (but no literary agents please as I am trying to go solo on this).
I have posted two of my “mini chapters” on my WebMD blog and they are getting great response. Here are the links and please write a comment on WebMD if you like what you read!
And my friend Bruce Feiler who has a monthly column in the New York Times Styles Section wrote about my favorite topic and quoted me in his article. This will be in tomorrow’s paper so check it out.
I will write during the week. Fingers crossed for the Yondelis to work quickly and for my first few weeks on this treatment to be as gentle as possible!
Whenever I get very sad about my medical situation, I always try to take myself to a place of gratitude.
I think about the wonderfully rich life I have been privileged to have. I think about my beautiful husband, wonderful family, my large group of friends and all of the amazing experiences I have been given. When I think about these things, nothing seems too bad. It makes me even more committed to help myself get better so I can continue adding on to this life of mine that I love.
Being in touch with my gratitude was definitely a big part of the past week. Despite dealing with really frustrating medical news and having a lot of “highs and lows” as we spoke with Dr’s and got rejected from studies etc., Dave and I managed to get to Chicago for 36 hours to attend a family Bar Mitzvah. It was really good medicine to see Dave’s family and take our mind off of my medical issues.
And there were a few wonderful highlights when we returned from Chicago as well. I had the opportunity to speak in front of about 500 survivors and care givers as part of Memorial Sloan-Kettering Cancer Center’s annual survivorship day which was a truly special experience. And just yesterday my brother’s son Ben became a Bar Mitzvah and Dave and I got to partake in his special day.
I find that if I don’t truly appreciate the happiness of those moments, I am not strong enough to handle the difficulty of my medical situation. If we don’t experience the lowest of lows, we never appreciate the highest of highs. Dealing with my cancer challenges has definitely made me appreciate so much that life has to offer.
After a LONG week of exploration and working with A LOT of different Dr’s from around the world, it looks like we are getting close to a plan. I will be starting a trial this week in either Boston or NJ. The drug is a 24-hour infusion and if it works, I would be given the drug 1x every 3 weeks. We are truly, truly hoping that this shrinks or stabilizes my tumors. If this doesn’t work, we are lined up to go to Switzerland down the road for another type of treatment that isn’t yet approved in the U.S. yet (in trials only).
What’s challenging at this stage is that we have to “sequence” our medical plans very carefully. Because I have been on so many different drugs, there are certain trials I am not eligible for or I have to be off certain drugs for a certain amount of time. So, we need to pursue medical options that we believe hold the most promise for me while not potentially eliminating me from something down the road if a treatment doesn’t work.
We are feeling good about having a plan and slowly but surely coming out of our “slumber”. And we continue to appreciate your posts on my blog and your emails and calls. Little did I know that I am creating a movement among some of Dave’s bald friends who took my “I Won’t Be Bald or Fat” blog entry literally and are now stepping up their workout routines!
I will be starting the trial on Thursday/Friday and will update next week. Your continued love and support makes finding my gratitude so easy. For this I am so thankful.
