Very exciting news! Dave and I are featured in Redbook’s January issue talking about Spin4Survival!
With 6 weeks to go we have signed up close to 100 teams and have already raised $130,000 for much-needed cancer research at Memorial Sloan-Kettering Cancer Center. Please visit Spin4survival.org to learn more about the event happening on January 27th and to make a donation to this very worthy cause.
Sorry I have not written in a while. Dave and I have been really busy with getting ready for Spin4Survival #2. We also FINALLY took a long-awaited trip to Acadia National Park in Maine. I say finally because this trip has been 4 years in the making!
About 5 years ago, we bought an absolutely beautiful photograph of the fall foliage at Acadia Park in Maine. The picture hangs in our living room and it is stunning. I have always said that “One day, I’d really like to get there and see the leaves myself”. We planned it for 2004 and we had to cancel because I was going through chemotherapy. We planned it for 2005 and had to cancel because I had medical tests I needed to attend to. We planned it for 2006 and had to cancel because of a wedding. The hotel reservations department always said “OK, we’ll just book it for the same weekend next year!”. Being the geek that I am, I found a fall foliage calendar online and was tracking the season week by week. I had figured out the perfect weekend to see the peak foliage. We were not disappointed at all. It was truly beautiful.
I was THRILLED to finally get there in 2007. It was a bit symbolic for me to finally have our trip. In a way, it confirmed to me that “Dave and I can handle this.” Cancer is just becoming a part of our lives and we will not let it hold us back from anything. Although I had my tough chemo just a few days before, I managed to shuffle my way through a beautiful hike. We had to stop every few minutes but I was happy that I was able to complete it.
Once in a while, I look back on the last few years and realize how far we have come. When I was first diagnosed, a trip like this would not have seemed possible. We were way too concerned with my immunity being low…flying on a plane anywhere (to visit our Chicago family, to go to a friend’s wedding etc.), would have seemed dangerous and in poor judgment.
Now, 3 years into this battle, I am happy to report that we have told cancer where to fit into OUR lives versus the other way around. As we speak, we are packing for a trip to Chicago for Thanksgiving and we are booking tickets to witness a dear friend’s wedding in Mexico.
All of this despite the fact that the chemo treatments have not let up at all. In fact, I am feeling a bit more tired from them with every cycle. I guess you learn to live with what you are given. When people ask me “how do you do it?”, I just shrug and say “my choices are to live the life I want or let cancer get the better of me”. I refuse to give in to this disease, I refuse to let it win.
The launch of Spin4Survival 2008 has arrived!
I am THRILLED to announce that we have officially launched Spin4Survival 2008!
Spin4survival.org is now open for business….accepting teams, riders and donations. MARK YOUR CALENDARS! On Sunday, January 27th, 2008 teams will participate in locations throughout the world to raise money in an effort to eradicate cancer.
For those of you who are not aware, Spin4Survival is an indoor cycling event that Dave and I created last year to raise money for essential cancer research and important cancer survivorship initiatives. The inaugural event was unbelievable – we raised more than $200,000! Memories of the day often carry me through the tough times I’ve had over the past year.
This event is really a loving tribute to my extended “family” at Memorial Sloan-Kettering Cancer Center (MSKCC). Dave and I developed Spin4Survival largely because we are so grateful and appreciative of the entire staff who treated me throughout the past three years, and who will continue to care for me in the uncertain years ahead.
While I was going through treatment, I vowed that if I were lucky enough to beat cancer, I would create an entity that would thank them for all of the time, effort and concern they invested in me. I am so grateful that I can make good on that promise. Even after 3 years of battling the disease, the doctors and nurses of MKSCC continue to fight on my behalf to find the best treatment for me.
Spin4Survival will challenge and reward your mind, body and soul. It is a celebration of strength, courage, vitality and endurance in the face of adversity. 100% of the funds raised through Spin4Survival will go directly towards cancer research and cancer survivorship programs at the world’s leading institution for cancer care – Memorial Sloan-Kettering Cancer Center. And rest assured, this money is put to use right away. A portion of the money raised just last year, was used to fund a trial that has directly influenced my current chemo regimen!
Additions from Last Year – for those of you who participated last year, expect even more fun this time around!
Given the “buzz” of last year’s event, bikes will go fast so sign up TODAY to ensure you have a spot! Visit spin4survival.org to register and donate.
How Can You Help?
So many people have reached out to us to ask how they can help. We so appreciate it!
Thank you so, so much,
Jen
I showed up at the chemo clinic this past Friday to get my usual “spa treatment”. The typical drill is that they check your blood work to make sure that a variety of different components have “bounced back” to normal from the past treatment. Assuming that your red blood cell and white blood cell counts are at normal levels, the Dr’s proceed with the chemotherapy treatment.
I have always taken this “drill” as a given since my blood counts have never been questioned. They are always elevated and I am able to proceed with chemo, no problem. My Dr. had started to pull back on some of my shots to see how my blood levels would react with less “medical assistance” but I didn’t really think much about it…
However, this past Friday, my blood counts were not high enough and Dr. Maki had to turn me away from treatment. This is the first time in my almost 12 months of receiving chemotherapy that this has happened to me. It is nothing to be alarmed about and the nurses told me that this happens all the time with “typical” patients. What, since when am I typical?!?!
The nurses didn’t seem to understand that I am the patient that has defied odds twice now with cancer! I have ALWAYS been in the top 5% of response rates from the chemotherapy treatments and all 3 surgeries have gone as well, if not better, than expected. Telling me that I had a “typical” response was like a slap in the face! How dare you make me realize that I am human and I simply can’t surpass all expectations every time!
I dont’ remember being this annoyed since the dentist thought I had a cavity from all of the chemotherapy treatments (it is common to get cavities because when blood counts drop, the natural chemical balance in your mouth changes making it harder to flush away bacteria). Since I have NEVER had a cavity in my life, I told him to make up some other reason why he thought I might have to have some work done since I refused to accept that chemo had given me a cavity.
Ask Dave and he will tell you that I have rationalized the cavity situation a hundred different ways since accepting that I just might have had a cavity, is more difficult to handle than the cancer diagnosis!
Truth be told, I was feeling rather tired this past week and certain side effects were flaring up more than usual. So, I can’t say it was a complete surprise that my blood counts were not as strong. Also, I was a tiny bit relieved that I could attribute some of my symptoms (lower energy levels, mouth sores, stomach issues) to something tangible. As many of you know, I often get concerned that gradually getting weaker is just something I will have to accept the longer I am on chemo. The good news is that I could blame my low blood counts for my recent lethargy.
So, Dr. Maki sent me away with a little gift (an energy-boosting shot that I love!) and told me to report back next week when we will start again. Hopefully, this “typical” stuff was a mistake and next week I will over-deliver as I typically do.
Have a great week!
I can’t IMAGINE what my life would be like without the people I’ve met along the way.
The cancer patients and survivors
who every day inspire me to keep going. Everyone one of them has their own amazing story and we all push each other to live each day to their fullest. From the amazing group of “cancer chicks” I was introduce to early on in my diagnosis (Meg, Kat, Samara, Amanda, Lisa and Cynthia) to the MSKCC “Rock & Run survivor board of directors who put together a truly inspiring event to reward survivorship. Friends like Donnalynn and Rich and Michael and Gloria who I’ve met through Spin4Survival, my doctor or by roaming the halls of MSKCC. People who have become fast friends despite age differences and different types of cancers.I have been back at work for two weeks and I am happy to report that, on the whole, I have been very good at taking care of me.
Work has been very hectic as there has been a lot of organizational change. My boss (the CMO) along with the CFO resigned the week before I got back and I had three resignations in my department since I got back to work. But, rather than stress out about it, I have been taking everything in stride. I have been working fairly long hours but they are not stressful and I have been the one making the decision to stay late if I need to. I have been getting to bed between 9-10PM every night, eating well and exercising.
My first chemo cycle has been pretty uneventful. I think my body is in a bit of shock that we are “back to chemo again” but, with the exception of 1 really tiring day, I am feeling really healthy and strong.
I have my “port” outpatient surgery scheduled for this Wednesday and I am really dreading it. For those who don’t know, a port is a medical device that is inserted into your chest (right above your breast bone) and it makes it easy for the nurses and doctors to take blood and administer chemo on a regular basis. Since I don’t mind needles, all of my chemo and bloodwork has been through the veins in my arms but most of my veins have had it. The last few chemo cycles have been very hard in that the nurses can’t find a good vein. EVERYONE I know who has ever had a port says it is the greatest thing in the word. It doesn’t hurt at all and it makes chemo so much easier. It looks like a little bottlecap in your chest and most people hardly notice it. I have been resisting it for a long time because I don’t want yet another scar. However, I realized that I need to get over my vanity and accept that this is the right thing for now. The Dr’s will keep the port in for the remainder of chemo and then I will have quick outpatient surgery to remove it.
Dave and I got a real treat last weekend when Eric, Missy, Samantha and Ally came to visit from Chicago. Although they were only in the Big Apple for one night, we packed A LOT in. We went to Dylan’s candy bar, John’s Pizza, Central Park, the M&M;’s Store…and we still had time to watch High School Musical 2 in our apartment. Having the family visit really lifted my spirits as I was feeling pretty tired from the chemo. It also puts everything in perspective. Visits with family and friends always remind me why I am going through all of the chemo and surgery to begin with…so that I can continue to stay alive and interact with all of the people I love.
I will write again after my port surgery.
It is Sunday night and I am getting ready to go back to work tomorrow. I am looking forward to getting back to my “normal” schedule but I need to make sure that I continue to prioritize myself.
This became very clear when I met with Dr. Maki this past Friday before I started chemo again. I asked him how much longer I would be on chemo and his answer was “long”. I asked him the question that I have been thinking about the most lately; “Since the tumors were removed with surgery and you can no longer ‘see’ any cancer cells on a CT scan, when will you know when to stop with chemo?” His answer was honest but not cut & dry. He basically said that he would like to keep me on the chemo for up to a year…based largely on how well I handle it. If I get run down, tired, have bad side effects etc., he will lower the dosage or take me off chemo completely.
The good news is that I have already tolerated a great deal of chemo and there is no reason to believe I shouldn’t continue to do so. However, I am acutely aware of the fact that now, more than ever, it is REALLY important for me to take care of myself.
I can’t control it if I have bad side effects due to the chemo regimen but I can control my general health (what I eat, how much I sleep) and my stress level (how much I work etc). I made a vow to myself tonight that no matter what is thrown at me as I get back to work, that I will make myself #1. This entails:
I am really hoping that I can keep my word and manage my health and my stress levels.
Cancer is quite ironic…it’s hard to believe that I made this vow to myself so that I could continue with chemo for as long as possible. But, I want to make sure that I have done everything I can to beat this disease for once and for all.
Please help make sure I am keeping my word!
Dave and I met with my surgeon on Thursday and he ordered me to stay home for one more week. Part of me was frustrated with this news and the other part of me was a bit relieved. I am anxious to get back to things as I am going a bit stir crazy in the house but, given that I have had lots of bad stomach cramping and soreness, I agree with him that I am not “back to normal” just yet. Because all of your internal organs are “removed and put back together” during surgery, it can take a month or so until everything is working well again. Basically, your stomach is confused and is trying to re-route its path. So, I am home for one more week.
Dave and I met with the development team at MSKCC this past Wednesday to talk about the future of Spin4Survival. The event is near and dear to our hearts and we have a lot of energy to make it even bigger and better for 2008. That being said, it requires a lot of time, work and resources. We believe we have the right business model but we need some “expert” assistance to really make this event take off (e.g. organizing rides in more than one gym, perhaps events in other states). We were thrilled to hear that MSKCC wants to partner with us to make this event a success! They will be helping us with the event for 2008 and then, ideally, for 2009 and beyond, we will form a committee and MSKCC can help make the event national in scope! Dave and I were thrilled to hear that the hospital likes the idea so much and we are very excited to help make this vision a reality.
Although I am still recuperating, Dave and I were able to go to Newport and celebrate the wedding of our dear friends Kelly and Vishal. They got married at a beautiful mansion and the weather was perfect. The wedding blended Christian and Indian traditions and it was so, so great to catch up with good friends.
Chemo starts again this Friday so I will be trying to rest up for it this week. I will find out on
Friday what my oncologists plans are in terms of how long I continue with the treatments and I will keep you posted on my next blog.
I am happy to report that I am getting better each day. I have sworn off the Vicodin and am now getting by on tons of Tylenol and sleep. The appetite is starting to come back and I have been doing a ton of walking which has gotten easier every day. What is so nice about recovery this time is that it is taking place during the summer! My last two surgeries were in December and January so I had no choice but to stay indoors. Now, I can get out a bit more. I have had a really great time “rediscovering” the city through my walks. I have been seeing lots of friends by making dates to walk in Central Park or to “escort” my friends to their jobs in midtown. If anyone is looking for a walking companion, just call me up!
I have been so, so touched by all of the wonderful “get well” messages I have received! Dave and I are constantly reminded of just how wonderful our friends and family are. My hospital room was filled with non-stop flower deliveries and visits from my aunts, cousins, distant cousins, both sets of parents and TONS of friends.
My friend Robin became my “surgical stylist” and bought me loose dresses that would fit easily over my distended and sore belly. Luckily, the baby doll “maternity” look is in so I can be both practical and fashionable.
My neighbors Erica and Nick placed a huge “star” pinata outside of my door along with a “We Hate Tumors” sign to welcome the “superstar” patient home from the hospital.
When I got home, I received pajamas, massages, candles, balloons, FLOWERS,books, movies, food – you name it! Amazing. It is so nice to be loved!
The great news is that the pathology report came back and it looks like the chemotherapy has been doing a great job. One of the tumors is completely dead and the other is “mostly dead”. We are going to keep with chemo for a while longer to maximize the chances that it doesn’t come back but we are starting to see a light at the end of the tunnel. Chemo will begin on August 10th and will continue 2 out of every 3 Fridays for the next 6-12 months.
That’s all for now. Dave bought me this great lounge chair cushion so that I can sit comfortably on our roof deck and I love it! Lots of R&R; for my last week at home.
Dave and I have the wedding of our great friends Vishal and Kelly this weekend. So, assuming I feel great, we will be heading up to Newport for the weekend. We are so excited to share this special day with them!
I will be sure to write more after the weekend! Thanks again for checking in on me.
It is Monday and it is so good to be home! I spent more time in the hospital than I had planned (6 days) and was very anxious to get back to my own bed. I am still very, very sore and my stomach is very distended (I tried to smile when someone wished me “good luck” with my pregnancy today!) but I feel progress every day. After a week or two recuperating at home, I should be as good as new!
Although it stinks to be in the hospital, all in all, it was a really good experience. The surgery was very successful according to my Dr’s (we will find out more next week) and I was beyond lucky to get a huge, private room during my 6 night stay. I had visits from tons of family and friends, received a few wonderful foot massages, and met some really inspiring patients as I conducted my daily walk around the floor (after stomach surgery, Dr’s make you get up and start walking as quickly as 12-18 hours after surgery…even if “walk” really means hobble as it did in my case). At least I make the 45 minute mile look good 🙂
I am not on any kind of specific diet but eating has not been easy. After a few bites, I tend to feel pretty sick or full. Hopefully in another week or so, I will have a normal appetite. I guess losing a few pounds could be the silver lining on this otherwise very painful, “unfun” experience.
But now I am home…catching up on emails, good books and good movies. I’d love visitors or calls so please reach out if you are around. Here are a few pictures to give you a “sense” of my hospital experience….I will write more when it is comfortable to sit in one place for more than a few minutes at a time!