Caroline's Breast Cancer Blog

     Radon is a colorless, odorless, tasteless, but radioactive, elemental gas in the bedrock of many areas in the U.S  It is the second leading cause of lung cancer after smoking and is the leading cause of lung cancer among non-smokers. This gas leaches into our homes through our basements, crawl spaces, and foundations, increasing the risk of lung cancer.   I have no idea why I have lung cancer, but as a non-smoker with no family history, I occasionally think about its cause.        Several months ago I had a radon home-test which I didn't use because it was expired.  As the weather is getting cooler around this area and I think about our house being "closed up" more for the winter months, I remembered that I wanted to check our radon level.  So, a few weeks ago I finally went to the local hardware store and picked up a new home tester.  I followed the easy instructions and have learned that our radon level is 10....

Living with cancer is an evolving experience.  Back in April, I realized that I wasn't experiencing pain that required me to be on Oxycontin and started the four-month process of weaning off of it. I knew, at that time, that eventually I would probably need to go back on it. I have conflicted feelings about the stuff.  I certainly hope that I'll never need it in the future, but in all likelihood, there will come a time that I will be thankful that it's available to me.   Since I've gone off of Oxycontin, I have been fortunate enough to have very little pain.  There are some days when I don't have any twinges at all.  (I love those days!)  However, two weeks ago things changed, a bit.  I woke up with right rib pain in a specific area near my upper back.  I only felt it when I moved my arm a certain way, but it was sharp enough to take my breath away.  For five consecutive days I woke up to the same pain, so I finally called my oncologist....

Acronyms...they're everywhere.  In the cancer world, there are tons of them.  Here are a few I use on a regular basis:  CBC, IV, CT, PO, NPO, NSCLC, IR, CA19-9, CEA, EGFR, ALK, ROS1, cMET, AHCC...the list goes on and on. I recently learned of NED.  I searched it, read about it, and long for it.  N o E vidence of D isease.   At my most recent appointment I asked my oncologist about NED.  I was sadly told that I will never get there. Darn. NED really means NO evidence of disease and even if my lung tumor and tumors in my liver shrink away, the mets to my bones will always show up on imaging studies such as X-rays and CT scans.  I understand that once there are bone changes, even if there isn't any active cancer, the lesions in the bones are there forever.   My oncologist, a very kind young man, gently reminded me that my disease is stable...not gone.  I had to remind myself that I've always been told that there is no cure for me....

For the last few years, I have been on a low dose blood pressure lowering medication.  My dad had high blood pressure, so I wasn't surprised when I, too, was diagnosed.  Monitoring blood pressure is simple.  Whenever I think about it, I use the home BP monitoring device I bought at Walgreens which precisely measures my BP and heart rate. I write down the results on a table my internist gave me and once a year, he looks at it and makes dosing adjustments, if necessary.  Unlike BP medications, it's not possible to know if chemotherapeutic agents are working without periodic imaging studies, such as CT scans, which can't be done at home. I go to the hospital and from the time I check-in until I walk out, it's a 2-hour appointment.  I start getting nervous a few days before the tests until I hear the results. The way it works is that we cancer patients dutifully get chemotherapy, either by IV infusion or, as in my case, orally for several weeks or a few months. ...

Like all of us, I live with many uncertainties.  Before my cancer diagnosis, most of the uncertainties I thought about were not of the "life and death" magnitude that I think about now.  Back then I could sort out the level of uncertainties I had to deal with into two basic categories,  "big" deals and "small" deals.  An example of a "big" deal uncertainty was whether or not I would pass the Genetic Counseling board exam, and an example of a "small" deal uncertainty was whether or not I needed to leave the house with an umbrella.  Despite both of these examples being uncertainties, I had background information that helped gauge the amount of risk I was taking on.  I knew that if I studied for my board exam, I had a better chance of passing, and if I listened to the local weather forecast I'd know if I should pack an umbrella for the day. In other words, I was able to adjust the burden of my risk by my actions...you know...I had some...

I really don't know how a person in my position would be able to manage having stage IV lung cancer, or any serious long-term illness for that matter, without health insurance, access to great doctors and support from staff within the system.  Every month I call my oncologist's office and speak to the person in charge of prescription refills to get my oral chemotherapy medication for the following month.  I was told to call them when I have five days of meds left to give them enough time to deliver the pills to my oncologist's office.  Earlier this week, I made the usual call and later in the day received a message saying there was a "complication with my insurance company" and that I would receive a call the next day.  It turns out that the cost of my medication increased 5% and my insurance company declined the claim. [In dollars, that's from $14,000 up to $14,700/month.]  Of course, I automatically got upset...angry that the price went up so much...frustrat...

Although it's taken four months and help from a few of my friends, as of last Friday I am off of oxycodone.  I weathered a couple of days of relatively mild withdrawal symptoms after I took my last, miniscule, dose.  It's now been four days and I feel much better.  In communication with my Pharm.D. friend, W.H., pharmacokinetically-speaking, the dose I was on was so small that I should have been able to stop taking it a couple of weeks ago.  However, in  order to be successful, W.H. encouraged a weaning schedule that depended upon how I felt. I am fully aware, (as I'm sure W.H. is also), that I was, initially, physically dependent on this drug and then somewhere long the way, it became a head game for me.  W.H. told me to hang in there and be patient because it is common for patients to fall off the wagon near the end of the weaning plan.  I'm sure that's because the process is really long and most unpleasant.  During the last four months, I was ...