Jill Costello's Journal
Written Feb 18, 2010 11:09pmOnce again, I am proud and honored to say THANK YOU, THANK YOU, THANK YOU!!!
To the almost 1000 joggers and even MORE donors, THANK YOU for your participation and support of the 1st Annual "Jog for Jill" in Berkeley last weekend. The image of waves of runners storming past the start line towards the Campanile will be ingrained in my mind forever. The next time I'm laying face down in my bed (crippled by chemo) or squeezing my eyes shut tightly inside a CT scan machine, I will be imagining the crowds and faces of all the people who give me the strength to continue. I was FLOORED when you all supported by birthday wish and together we raised over $4,000 for the Bonnie J. Addario Lung Cancer Foundation. I almost can't believe it, but this jog has raised almost $45,000!!! Thank you especially to Darby and Sheila for their incredible organization of the event, Genentech for their $5,000 grant, and one of my professors who made a generous $3,720 donation (based on $40 per point scored by the Cal Men's Basketball team during their home game vs. Washington last week). I truly believe that the awareness and funds that we are raising for lung cancer will bring us the CURE that much faster!
As the semester carries on, I'm making progress towards to all of my goals. As always, my first priority is my health and well-being. On Tuesday, (also my Grandma’s 87th birthday!) I was back at CPMC for chemo round #13. It was a long day, starting with blood tests at 8am, a meeting with Dr. Grant, 4 hours of chemo, radiation imaging, and finally x-rays. Luckily, my blood platelets and white cell counts (which can be diminished during chemo and put you at risk for infection) are all holding up well. I must have some strong bone marrow that keeps rejuvenating my body after all of these rounds! Lots of people are hospitalized during chemotherapy because their bodies cannot tolerate the destruction done by the drugs and it makes them very frail and weak.
We came out of the meeting with Dr. Grant with some more good news: there ended up being enough frozen tissue from the biopsy in June to do more genetic tumor testing. This means that I won't have to get another invasive (and scary!) biopsy done like we had thought. The tissue was tested for mutations of the EGFR (epidermal growth factor receptor), K-RAS, and ALK genes. All of my tests came back negative for these mutations. The significance of these tests is to figure out which drugs I may be more or less responsive to, and to figure out which would be our next line of treatment if the cancer started to grow. For example, Tarceva is a drug that has proven to be highly effective with patients whose tumors have the EGFR mutation, although it still has a pretty good chance of working with those without the mutation. Since I do not have the EGFR mutation, Tarceva might not be the next-best treatment option for me. However, another drug called Erbitux has been developed for patients without the K-RAS mutation. Since I am negative for that mutation, it would likely work very well for me. As for the ALK mutation, research is still being done on medicines for patients with and without the mutation. The good thing is that we now know the genetic profile of my tumor-type for future treatment decisions. (Maybe I should have considered the bio degree?!?)
Following the discussion with Dr. Grant, we headed over to the infusion center. After they draw blood for tumor markers and chemistry panels, they hook me up the IV to PowerPort by my left clavicle. I usually just lay in bed or a reclining chair and nap while they go through all the different bags of fluids: Aloxi and Decadron for nausea, Alimta (the actual chemo drug which targets all rapidly growing cells), Avastin (the targeted therapy that cuts off blood supply to tumors), and Zometa (the bone-strengthening fluid). After about 4 hours, I finish off with a B-12 shot for an energy boost and they send me off. I've gotten so used to it all that I've learned to just relax and meditate throughout the process. The fatigue usually doesn't hit me for a couple days, and then I just try to it sleep it off. Without Cisplatin, I've been able to cut back on the steroids and nausea medications, so I'm feeling less loopy and drugged the first few days after chemo. Got to appreciate the little things that have made life a little easier!
Team Jill was out the door of the infusion center with just enough time to make it to our appointment on the radiation oncology floor. We've been considering bringing out the big guns on my clavicle and breast since they've become more painful over the past couple of months, and now the time has come. Since radiation is such a specific treatment, and the spots we are targeting are so close to the surface of the skin, my doctors expect little physical side effects and just a little added fatigue. This appointment was to complete the "imaging process" so that the doctors could map out the placement of the lasers’ angles and targets during the actual treatment. The main task was creating a big blue body mold that will cradle me during each of the sessions. They began by filling a stretchy bag with some combination of materials that warm up and expand into a foam. Then I laid on top of the bag in the exact position I will be in during treatment and the foam hardened to fit my body. During the process they drew all over me with Sharpie and gave me three TATOOS (ok, just little black dots) to confirm the alignment they will use with the radiation lasers. Feeling like a bit of a science project after all of the graphing and drawing, poking and prodding, I was finally free to go! Go down the elevator to the x-ray department, that is...
My hip and back have been flaring up lately which has made it hard to walk and sometimes to even get out of bed. Although I do have some tumors in my pelvic bone and spine, both my athletic doctor at Berkeley and my oncologist think that the pain is more likely to be associated with a muscle pull than a bone metastasis of the cancer. I'm thinking I probably did a little too much jogging on Superbowl Sunday and a little too much walking around at the aquarium in Monterey with Bryce on Valentine's Day. The results from the x-ray should tell us if there is anything to worry about with the bones in that area, but I'm betting some time in the hot tub will do the trick.
Anyway, back to those goals...
-$45,000= closer to the discovery of the CURE!
-Chemo and radiation= closer to remission!
-Getting cleared to practice next week= closer to racing!
-Finding out I only need one class to graduate= no finals, and graduation on May 18th!
I just had my first dose of "real" radiation today. It is the first of 13 consecutive (Mon-Fri) treatments. The next set of CT scans are set for March 1st and will give us a good picture of how everything is progressing...or should I say... how ALL the tumors are DISAPPEARING!!! In the meantime, I will be enjoying my last 4 months in Berkeley and visualizing perfect health. I’m taking full advantage of the little things I love about Berkeley: eating with my breakfast squad, lounging in the TV room, and reading on the sunny balconies at Kappa, practice at Briones on a clear crisp morning, trips to Cheeseboard with friends, scooting around campus, mass at Newman Hall, hot chocolate dates with Professors, and so much more! When you’re living just for today, it’s easy to appreciate all that you have been given and witness how truly blessed you are. For Lent, I’m going to try to get back into writing in my gratitude journal. I’ll let you know how I do!
Thank you for continuing to support me through this long and challenging journey. I can’t wait to be celebrating remission, the cure, and all other good things that are to come. (including Mama's birthday luck tomorrow for radiation #2!)
All my love,
You can still make a donation to "Jog for Jill" here! http://www.kintera.org/faf/home/default.asp?ievent=337404
Newspaper article: http://www.dailycal.org/article/108147/sunday_s_jog_for_jill_brings_awareness_to_lung_can
"Jog for Jill" video: http://www.youtube.com/watch?gl=JP&hl=ja&v=fA5MvJXPM98
Exciting new progress for a lung cancer vaccine: http://www.lungcancerfoundation.org/2010/02/14/hope-in-santa-barbara/
Written Jan 24, 2010 9:38pmHappy New Year!
It seems hard to believe that the year 2010 and my final semester at Berkeley are upon us. I've got a lot of plans for the year ahead: graduating from Cal (and Kappa), winning an NCAA championship, and, most importantly, being put in remission! With faith, hard work, and lots of rest, I think I'll be able to accomplish them all.
After my finals were over in December, I had a quick turnaround for chemo...the next day! The day is a lot shorter now without Cisplatin. Instead of being at the hospital 9a-5p on chemo days, we've cut it down to about 5 hours. By the next week I was feeling good enough to enjoy our annual Mother-Daughter Tea Party (with around 80 guests!), my friend Sami's Hanukkah party, Christmas Eve at my house with all 22 relatives, AND Christmas Day around the corner at Auntie Kathy's.
After a few days of recovering (and a spa day in Calistoga), I was off to Park City, Utah! My friends Katharine, Darby, and I stayed with my recently graduated roommate K.C.'s house. We were able to visit the course in Salt Lake City where the winter olympics were held in 2002 and where K.C. now trains. Although we spent most of the time relaxing and taking in the gorgeous views of Park City and Deer Valley, we did make it onto the slopes one day (ok...a half day) where Darby and Katharine took their first steps into skis and I coached! The day after I arrived home, it was time for chemo again---#11 total, #1 of the new year.
As usual, it wore me down hard for the first few days. The only way I can describe the fatigue is like waking up the morning after running a marathon, but not having trained for the marathon, so your whole body is sore, weak, and achy. I've been lucky enough to keep the nausea mostly under control, but there are still mornings when I feel it. With all the side effects, I think to myself, "This too shall pass." In fact, since stopping Cisplatin, I've gotten little sprouts where my hair is growing back! I use these little "wins" to remind myself that perfect health lies ahead.
So what is the road to perfect health for me? On Tuesday I'll be in for chemo #12 (#2 of the new year!). We'll also be discussing radiation with Dr. Grant because the breast and clavicle lesions having become more painful in the past month. I'll probably undergo another biopsy to collect tissue for more genetic testing in the next fews weeks as well. Other than that, I'll be living up every day I am blessed with! I wish the same to you.
I'm so excited to announce that "JOG FOR JILL" will take place on February 7th at 1pm in Berkeley. Bear's Lair Pub (on campus) is throwing us a Superbowl "after party" at 3:30p and 10% of the proceeds will be donated to the event. Bring the whole family! You do NOT have to be 21 to attend. Here is the link for registration: http://www.kintera.org/faf/home/default.asp?ievent=337404
Thank you for your continued support. It is your love, support, and faith that have gotten me through these past 8 months and will lead "Team Jill" to victory! I am so thankful to have each of you in my life.
PS- I love hearing from all of you in the guestbook, so please don't be too shy to write!
PPS- I added some new pictures too!
Written Dec 12, 2009 3:20pmOn Monday, I was in for my check-up PET and CT scans.
When you have cancer and go to the doctor for the scan reports, she will tell you one of three things: "it's shrinking," "it's stable," or "it's growing." On Tuesday, when I went to visit Dr. Grant, she had the PET report in front of her and told me the news no one is ever ready to hear, "it's growing." She told us that the bones looked stable, but that there was growth and more activity in the liver and lungs and a new lesion near the breast. Shocked? Disheartened? Devastated? There are really no words that can describe the feeling of that moment, but for me it was all of the above. On a teary ride home, I couldn't help but feel helpless. How could I be feeling fine, but getting worse? Had the last 3 chemos been a waste of time? What do I do if the next treatment doesn't work either?
The next morning, Wednesday, I talked to Bonnie (of BJALCF) and she told me, "Don't worry honey, Team Jill is about to EXPLODE!" We were in with doctors at UCSF that afternoon. The doctor couldn't get our scan CD's to open, so he too guided us off the PET report. Since it showed growth, we would need to switch treatments immediately. We talked about another biopsy (where they will go in and take tissue from the lung mass) for genetic testing and biomarkers. It was inspiring to hear about available testing and resources, but I was still grappling with the news I'd heard less than 24 hrs before.
When Mom, Auntie Kathy, and I arrived home, my Dad showed us the CT report that had finally been faxed over. It said that the lesions in the bones and liver were stable, and that the lung mass had actually shrunken! (3cm to 2.4cm) How could the reports explain the situation so differently? Since we were heading to Stanford in the morning, we put our curious minds to rest for the night.
We arrived at Stanford on Thursday with a slew of questions. At check-in we turned over all of our scan CDs, so that Dr. Wakelee could look at the images and make her own evaluation of the confusing situation. We sat anxiously for two hours, only to learn that Dr. Wakelee had been looking through our PET and CT scans with a fine-toothed comb and two other doctors. And her opinion? She sided with the CT and, after measuring and studying, didn't think the PET report was correct either. Phew! There was nothing to worry about, the chemo is still working.
On Friday, we headed back to UCSF for one more opinion. He, too, looked at all the scans himself and concluded: no need to switch treatments, liver and bones are stable, lung mass is shrinking, the breast lesion is barely visible and inactive, and most importantly, NO NEW GROWTH. The hope that we had received a Christmas miracle was confirmed!
Next Wednesday, I'll be in for chemo round #10 (woah), with just Alimta and Avastin. To say the least, this has been one roller coaster of a week. If you asked me last year whether finals week could possibly be more stressful, I would have said no. But this year, my limits have been redefined. I've got the Christmas tunes playing and I can't WAIT to be finished on Tuesday afternoon!
Kathy Lorentz gave my family a copy of this prayer in June, and we read it every day during the summer. Though its message seemed to escape me this week, I can now look back and find comfort in its words...
"Do not look forward in fear to the changes of life.
Rather, look to them with full hope that as they arise, God, whose very own you are, will lead you safely through all things.
And when you cannot stand it, God will carry you in His arms.
Do not fear what may happen tomorrow.
The same everlasting Father who cares for you today will take care of you then and every day.
He will either shield you from suffering or will give you unfailing strength to bear it.
Be at peace and put aside all anxious thoughts and imaginations."
-St. Francis de Sales
Ps- If you're on Facebook, please vote for the Bonnie J. Addario Lung Cancer Foundation to win $25,000 before 9pm tonight!! http://apps.facebook.com/chasecommunitygiving/charities/818833