(Pretend that I'm giving a speech.)
Family, friends, blog readers I haven't met yet, and fellow cancer ninjas:
Six months ago this week, I was in an emergency room learning that I have metastatic cancer. So much has happened during this time and here's where things stand:
My Cancer Status:
For as sick as I am, I'm doing pretty well. I've been taking a newer oral chemotherapeutic agent, Xalkori, for the last four months. Initially the side effects were really rough, but over time I've adjusted to most of them and have figured out how to work around the few remaining ones. CT scans, six weeks ago, showed my lung tumor and the tumors in my liver are all shrinking. The mets to my bones were about the same - thankfully not worse. Most all of my labs have returned to normal, or close to normal, including liver function tests. My energy level began to improve a few weeks after starting on Xalkori, but I still get tired easily and find myself needing to sleep a lot. I'm at the tail end of weaning off of oxycodone, which has been a long and painful process. I feel virtuous getting off of oxycodone, but am experiencing some bone pain, mostly in my ribs, (which isn't bad, given I have mets in most of my bones.) Right now, ibuprophen controls the pain well enough. I get monthly IV infusions of Zometa, which helps to reduce the risk of bone fractures. My oncologist is optimistic and only wants to see me monthly.
My Family:
Wynn continues to be a constant in my life, (before and), since my diagnosis. As my overall ability to re-engage in life has improved, he encourages me to do as much as I can. When I'm tired, and cranky, it sometimes feels like he's pushing me, but I realize that he just wants me to be well. My love for him is unbending.
Nathan finished the school year working as an assistant in a junior high class for autistic students. He left home earlier this week to return to UW-Whitewater to take his last class before graduating college. He's worked hard for this degree and is very motivated to be done. Nina took the MCAT last month, did well, and is in the process of applying to medical schools. She's working as a medical scribe in an ER, getting great exposure to and experience in emergency medicine. When I first discovered my cancer, I was so afraid my diagnosis would derail my children's plans. Six months later, they are both moving forward, as they should be. My relief is palpable.
My Work:
A couple of months before my diagnosis, I had committed to working at Loyola as a prenatal genetic counselor, 2+ days a week, along with my half-time job as a pediatric genetic counselor at St. Alexius. Sadly, I was not able to keep my commitment at Loyola, (so sorry Kelly), but have continued to work at St. Alexis. My co-workers and the leadership at St. Alexius have been amazingly supportive. Since Xalkori, I've been able to work half-time. When I'm working, (and sleeping), I don't think about being sick, so it's great to be there.
My Workouts:
I am now trying to exercise more regularly. It's been difficult because I'm often exhausted. Brigid and I are back to TRX classes on Saturday mornings and Wynn and I ride our bikes 1-2 days a week. Daily calisthenics, yoga and stretching are a priority.
My Outlook:
Having cancer sucks. Although I never have days that I feel "great", I have many days that are pretty darn good. I feel good enough to work a little, exercise a little, socialize and do day-to-day chores. I get teary eyed on a daily basis, for one reason or another. Mostly I get sad because I realize that although things are going well now, there is no cure for me. The uncertainty of how long Xalkori will work for me weighs heavily on my mind. I am hopeful that it will work for a long time and even more hopeful that new medications, which are in clinical trials now, will be available to me when Xalkori stops working. In any event, I will be on some type of treatment the rest of my life.
I understand that some folks who have limited time to live decide to quit their jobs, travel, spend money recklessly, and rack up debt they won't have to worry about. Others live for normalcy. That is me. I am grateful that I have the love and support from my family and friends to help me be as normal as possible.
Thanks everyone!
I have really never thought about myself in the context of miracles, but my story below sort of feels like one to me. It started about four months ago and I haven't blogged about it yet because it's a long, complicated story and I'm not sure I've completely processed it.
Pan-cancer genetic testing is done on tumor cells looking for any and all DNA mutations known to cause cancer. This testing will also tell which chemotherapeutic agents will work to inhibit cancer cell growth and which chemo agents won't help. Early on, I declined pan-cancer testing because I didn't want to know if I had a type of cancer that wouldn't respond to any known chemotherapies. However, after getting the bad news that my first chemo drugs weren't working, I decided it was time for me to have the test.
So in mid-February I had a second liver biopsy. My oncologist suggested that we send out samples to two labs. The first lab, Lab-A, could get us results on two lung tumor mutations, ROS1 and cMet, in 7-10 days. If I had either of these mutations, I could start an oral chemotherapy ASAP. The second lab, Lab-B, would do the pan-cancer testing, which would include ROS1 and cMet, but the entire testing result (for ~280 mutations) would take about four weeks.
I was all for sending a sample to Lab-B to get information about all DNA mutations known to cause cancer, but was hesitant to send a sample to Lab-A. The chances of me having ROS1 or cMet were ~1%, the test costs $thousands$ and I wasn't sure my insurance company would cover the cost of two lab tests that tested for the same thing. After long discussions with Wynn, he talked me into sending samples to both labs.
You know my good news that I have ROS1. [BTW, I also have cMet.] Immediately after receiving the results from Lab-A, the wheels were set in motion for me to get insurance approval for an oral chemotherapy called Xalkori. It took over a week to actually get the medication, but I started it as soon as I could.
Then, the results from Lab-B came back and here's where my story gets wonky:
Although Lab-B said that I have cMet, they did NOT find that I have ROS1. I happened to have an appointment with my oncologist the day the results came in and immediately panicked when he told me about the discordant results. My head swirled with thoughts. Shit...we were treating the wrong thing with a drug that costs $14,000/month and I was going through hell managing the side effects. My oncologist reminded me that there were studies showing that cMet also appears to respond to Xalkori and that I should continue taking it while he tried to sort things out. He had already called the directors of Lab-A and B and was waiting for calls back.
In the mean time, I went back and read the lab report from Lab-A and committed myself to reading every word on the report from Lab-B as well. (Pan-cancer testing lab results are >30 pages long.) Lab-A called my result positive for ROS1 because they found 27% of the cells tested to be consistent with a ROS1 mutation, (anything over 20% is considered abnormal.) Lab-B called my result negative for ROS1 because they found 0% of cells to be abnormal. However, in reading every-single-word on the Lab-B report, I noticed, in small print, that my ROS1 testing was sent out to a secondary lab and conducted at Lab-C. I called my oncologist, who immediately called the director of Lab-C. The director at Lab-C re-ran my ROS1 test and in April issued an "Amended Report" saying that I was found to be positive for ROS1, with 85% of my cells tested being consistent with a ROS1 mutation. Hmmmm 0% to 85%...how could that happen?
So here's the miracle part:
If I had never had a liver sample sent to Lab-A for the quick turn-around-time for ROS1 and cMet, I would have never known that I actually have ROS1 and cMet. Consequently, I would never had started on Xalkori. I'd still be on a traditional IV chemotherapy and probably not doing well...certainly not well enough to be back in the gym.
Thanks to my oncologist for wanting to send the sample to Lab-A and to Wynn, who convinced me that I should "just do it."
I got this shirt from my dear friend, Claudia. (Thanks, Claudia!) Much more than being Wonder Woman, I find myself to be a Wondering Woman. Under the cap, my hair is slowly growing back. It's still too short for me to feel comfortable to go without a wig or cap.
