Jill Costello's Journal
Written Apr 20, 2010 11:45amI should have known that having CT scans on notorious April 15th, Tax Day, was a bad idea. The car ride to the hospital included rants about how the government can't handle money, radio callers complaining about their outrageous income taxes, and more red lights than usual on our way to our 8:30am appointment. With my bloated belly and discomfort these past couple of weeks, I wasn't exactly shocked when the CT scans brought us some disappointing news: although all the other areas are stable, there was enough growth in the liver to indicate that Gemzar isn't doing the job. With all the fluid retention, night sweats, puffy cheeks, and skin sensitivity Gemzar was causing, I can't say I'm sad to see it go. It's time for Team Jill to turn a new page...
April 16th, 2010- The Dawn of Miracle Season
Now here's something that makes sense: waiting until 12:49am to be born AFTER Tax Day, and that's exactly why Daniel Shane "Dash" O'Neill had to put his mother through 21 hours of labor. He knew better! Congratulations to my Cal Women's Crew coach Dave O'Neill and his wife, Nicole, on their handsome new addition! You can check out our introduction under "photos."
The fact that joy exists even when everything seems to be falling apart is what keeps me going every day. I am so lucky that my life is filled with people who constantly remind me that the world is filled with more good than bad, more hope than doubt, and more love than pain. I can give so many examples by just looking back on my past two weeks. Whether it is hoards of high school friends coming out to cheer and support me at my regattas, more friends running marathons in my honor (Go Kelcey in Boston!!), a fellow student-athlete giving me a shout-out during her speech at Cal's senior athlete dinner, or the doctors who respond to my emails at any hour and fit me into their schedules the next day...I know I am blessed.
The fun didn't stop with Dash's arrival on Friday morning. On Friday afternoon, after scan reviews and consultations with Grant, Wakelee, and Jablons, I headed up to Sacramento to race at the Lake Natoma Invitational with a lot on my mind. It helped as a distraction to be racing Louisville, Sac State, Tennessee, Texas, Stanford, and Washington State...and even better to WIN EVERY RACE that Cal entered its varsity, junior varsity, varsity four, AND novice boats. We're working hard at practice and keeping our eyes on the prize for Pac-10s and NCAAs. GO BEARS!!! http://www.calbears.com/sports/w-crew/recaps/041810aab.html
That night in the hotel room after the races, I was busy bouncing around the internet doing my research on new treatment options and working with Bonnie to reach all of our medical cohorts for their opinions. This group now includes doctors in Italy, Boston, and Davis (in addition to our usual crowd at CPMC, Stanford, UCSF, and Seton) who all weighed in (literally) overnight to recommend Monday's treatment plan. As a group, we decided that lucky (treatment plan) number three would be carboplatin/taxotere every three weeks. We are dropping Avastin because it seems I have built a resistance to it. After two cycles of this regimen, I will have scans again. I have NO doubt that the combination of this new "cocktail" and my upcoming trip to Lourdes will produce the miracle I have been asking for...CLEAR SCANS! Ask, believe, receive. I think we can all agree it's about time for the receiving phase to begin...
Carboplatin is a drug in the same platinum-based family as my prior drug, Cisplatin. It breaks apart cancer DNA so it cannot reproduce. The fact that I was so responsive to Cisplatin and handled an unprecedented 9 rounds of it (most people can only have 4-6 rounds) gives me great hope that Carboplatin will zap these suckers up! The other drug I started yesterday is called Taxotere. For those familiar with breast cancer, Taxotere is similar to the commonly used Taxol. Both are extracts from the European yew tree and, unlike other chemotherapy drugs which halt the process of cell reproduction, these taxane drugs attack the support structure, or "skeleton", of the cancer cell and make it impossible for the cell to multiply.
The expected side effects of both of these drugs are mostly the same as those of the drugs I have already been on: fatigue, body aches, neuropathy (tingly feet and hands), drops in blood counts, sensitive skin, etc.- with the exception of one pretty-much guaranteed new symptom: complete hair loss. In my mantra of seeking out the best in the worst, I've decided to chop a bob and donate as much as I can to an organization called "Beautiful Lengths," which makes wigs for women who have cancer. This Friday, starting at 10a and staying as long as it takes, my long-time hairdresser Michelle is coming to Kappa to give me and 9 friends (so far!) some snips and gorgeous new dos. Another three other friends away at other schools have also volunteered to send me their ponytails! We're going to be able to make so many people so happy. If you are interested in joining us, check this out and let me know: http://www.pantene.com/en-US/article/requirements_for_donating.jspx
I've got a lot to prepare for in the next week: speaking at a Genentech conference on Wednesday, our chop party on Friday, my team's duel versus Washington and crew alumni dinner on Saturday, my friend Lauren's "fun run" for sarcoma research in Golden Gate Park on Sunday (http://www.active.com/donate/beatsarcomafunrun10/LKutzscher), and my departure to Lourdes next Tuesday! It's a crazy life, but I am so blessed to be living it.
Thank you for your continued love and support. I love reading all of your messages and affirmations. With your positive energy and these new drugs on board, I know my miracle is just waiting in the wings!
With complete faith,
Ps- Posted lots of new pictures!
Links from above:
Written Apr 7, 2010 12:22amWell, it's safe to say that March Madness has been redefined for me this year. I've been tried and tested, but with the help of my incredible family and friends, I'm still standing.
It started when we got the results back from my March 1st scans, which gave us the worst news we had received since June. Compared to the December scans, the left lung mass had grown from 2.5 to 3.2cm, the largest liver tumor from 4 to 10cm, and a possible new nodule (4mm) appeared in the right lung. In addition, and as expected, my tumor marker CEA also rose from 310 to 405. But with the bad news also came the blessing: an entire team of doctors and experts throughout the Bay Area who were willing to squeeze me in and guide my plan of action. So the Team Jill core (Mom, Dad, and Auntie Kathy and I) spent the following week zipping around to Wakelee at Stanford, Jahan and Jablons at UCSF, and Grant CPMC, and emailing with Bonnie at the Foundation and Dr. Marcus at Seton.
To make a long story short, we considered a few different drugs and clinical trials, but ended up going with the combination of Gemzar and Avastin. Gemzar interrupts DNA replication, inhibiting an enzyme called RNR, and kills tumors. The treatment regimen is a 2 week on, 1 week off course. Since my base level for judging side-effects is Cisplatin (basically the harshest chemo drug in existence), I'm not complaining about Gemzar. The fatigue is a bummer, but I'm a natural napper. My feet and ankles get swollen and sore, but Mom is a great masseuse. My only other complaints are the uncomfortable night sweats, skin sensitivity, and occasional hip/back pain from the bone metastases. Luckily I'm tough enough to keep on truckin!
At the same time I was also finishing the second half of my 14 daily radiation treatments to the breast and clavicle. Each day, the actual treatment only took about 20 minutes on the table, mostly consisting of positioning the lasers with the tattoos, and then a few zaps. I always brought my headphones and mediation soundtrack so the appointments flew by. These treatments sucked my energy, but they did wonders to decrease the throbbing pain I had been having in both areas. I can now barely feel the breast mass and can lay on my right clavicle. (I'm uploading a picture under the machine and one with my radiation diploma!)
Luckily on this journey, the bad always comes with the good. The day after we received the scan results, we also received the news that, after applying in December, I have been selected to travel to Lourdes, France with the Knights of Malta. For us Catholics, Lourdes is one of the holiest places in the world. Its bathes are where the Virgin Mary appeared to St. Bernadette and where thousands (67 officially confirmed by the Church and Medical Bureau since 1858) of miracles have been granted. My mom, Auntie Kathy, and I will make our pilgrimage with the Knights April 27- May 5. I am looking forward to coming back with the story of MY MIRACLE!!!
Another big step in the right direction this month was my return to crew practice! I've been visiting practice when I've had the energy throughout the year, but March 6th was my first day officially "back in the boat." I watched from the boathouse as the rowers went out for their warm-up run to the fence. As the sweatshirts came off, it was revealed that everyone was wearing their bright yellow "Cal Crew Cancer Killers" shirts from the Jog. Such a warm and thoughtful welcome back! Since then I've been making it to practice pretty regularly and even raced this weekend at the Pac-10 Challenge, where Cal swept all twelve races we entered! It feels good to be back on the water spending my spring where I'm used to being: in boats. We're working hard and well on our way to a season of success.
The week ahead will be filled with lots of practice, a little class, and plenty of naps before chemo #17 on Thursday. I am also honored to announce that this Saturday the St. Ignatius girl's crew team will be christening their new boat: the "Jill Costello"!!! Anyone interested in watching Fr. Sauer bless the boat are welcome to come out to Lake Merced at 4p to celebrate before we take it out for a spin!
I'm doing all I can to spread awareness about the #1 cancer-killer (lung cancer), but am even more proud of all my friends doing so much to work to help find the cure- Sydney Ford for running in the American Cancer Society's Oakland Marathon and Jaqueline Toboni for raising $2,000 for the Bonnie J. Addario Lung Cancer Foundation through "Penny Wars" and Powderpuff Football at St. Ignatius.
Otherwise, I'm trying to squeeze it all in during my last month in Berkeley before graduation on May 18th! Between treatments I've been busy with lots of fun, including the the Kappa Parents' Dinner/Auction, Chelsea Handler live, weekly family dinners with my teammates, weekends in Donner and Healdsburg, KC's US Freestyle Nationals in Tahoe, and my 2 year anniversary with Bryce.
Today marks 10 months into this journey. As I look back, I'm beginning to realize that even though many things have changed, much remains the same. As my mom likes to remind me, "all that was good is still good." So life continues, and I still believe that my cure is coming. Ask, believe, receive.
With love and thanks,
Written Mar 3, 2010 8:13pmTo all my amazing supporters:
Just wanted to give a quick update because I know you are all wondering how my scans went on Monday.
We got the CT report back and though the bones are still stable, there is growth in the lungs and liver. In addition to radiation every day this week (we're done with 10/14!) Team Jill will be running around the bay area to Stanford, UCSF, and CPMC to figure out "what next." I'll keep you posted as we work out the new treatment plan.
I've been surprisingly okay with the news, and I trust that this bump is just part of the road to perfect health. I have a "Daily Secret" calendar with entries from the book The Secret and I'm taking yesterday's entry to heart as I deal with all of this:
"Ask, believe, receive- just three simple steps to create what you want. However, very often the second step, believe, can be the most difficult one. And yet it is the greatest step you will ever take. Believing contains no doubt. Believing does not waiver. Believing is absolute faith. Believing remains steadfast despite what is happening in the outside world.
When you master believing, you have mastered your life."
So I'm going to keep on believing, "JILL IS HEALTHY!" until the doctors tell me I'm absolutely right.
With love and faith,