This post comes a bit late. I had my follow up CT on 9/20, and shortly after my scan, David and I took off to a cabin in Coshocton County near Roscoe Village. Our getaway had a dual purpose: to prepare ourselves for whatever the result of the scan might be, and also to celebrate our third wedding anniversary on September 22.
When the phone rang on Wednsday morning (coincidentally 9/22) at 7:30AM, we both knew it would be about the scan. My precious CNP colleague working with the medical oncologist called to tell us that the mass in my spleen had decreased in diameter from 3.8cm to 2.7cm. This reflects about a 50% decrease in mass, which is extraordinary.
When I hung up, there was gratefulness and praise to God, but it was not a gleeful kind of happiness. Both of us were prepared for bad news, perhaps I more than David. The good news was tempered with the knowledge that the Tarceva is working --- for now. It is not and never will be a cure; we are buying time.
Time~~time to live, to love my husband and my family, to serve God, to try to make a difference somewhere. Time~~not as I was before: strong, healthy and confident, but changed. Vulnerable, compromised. Not taken out of service, but the nature of my service and ability to serve has changed. I can no longer live my life 500 miles per hour with my hair on fire, consumed by my work, my patients, my pet projects.
Yesterday the medical oncologist told me that among patients on Tarceva, the average time until evidence of disease progression is about 12 months. I will have a CT scan of chest and abdomen about every 2 to 3 months. PET, bone and brain scans are not recommended for serial follow up. Those would be done if I become symptomatic. He has patients who have been on Tarceva for several years...I hope to be able to count myself among them.
I was honored to be asked by my pulmonologist (who originally diagnosed me)to speak to the second year medical students, both as as a patient, but also as a medical professional. Today, we presented my case to about 70 students. They were very attentive, and I was able to press home some points near and dear to me.
First: healthy non-smoker with chronic post-nasal drip / cough. At what point do you suspect cancer? Second: appearances don't tell the whole story. I am a perfect example of someone who looks good, but who is very ill and with substantial decrease in function. Third: level with your patients about your differential diagnosis, even if --especially if--- you don't know for sure. Explain your plan to get answers- tests, referrals, etc. Having a plan in place to get answers is comforting when that is all there is.
The students asked wonderful questions. I gave my contact information to one student who will get it to the group. I hope that I have put a face on lung cancer...that they might follow if they wish to do so.
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