Caroline's Breast Cancer Blog

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 ...

(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 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...

OK...so it's been six months since I last stepped foot into the gym, but today I did it!   I've been thinking that I needed to get back into a workout routine before my fatigue totally took over and I would never go back.   This morning when I decided that today was the day, I, as usual, felt exhausted.  I could have easily talked myself into putting it off for another day.  Before my diagnosis, I'd often go for a workout then come home and take a short nap.  Today I decided to try something different.  I took the nap before going to workout.   It felt great to be there again.  Although I saw familiar faces,  there were some machines, etc. that have been moved around since I was last there, so I had to search for my favorites.     Surprisingly, I got teary-eyed as I started my workout.  I was so grateful to be able to be there.  I have been consistently hopeful that I would get strong enough to return to the gym...

It's a strange thing...at this time in my cancer journey, I feel like I may be having more symptoms from withdrawing from OxyContin/oxycodone than from my cancer.  As of this week, I�m down to 10 mg of OxyContin/oxycodone, (oxy). About 10 days ago my friend, Debbie, said to me, �You know a lot of people�don�t you know someone that can help you with getting off of it?�   I then remembered that I have a childhood friend, W.H., who is a Pharm.D. at a large medical center in St. Louis.   W.H. and I have been dear friends since grade school and I don�t know why I didn�t think of him sooner.   I kept thinking I needed to consult someone in the detox or pain management fields.   Since I contacted W.H., he has given me his professional advice and a weaning schedule, all wrapped up in friendship.   I, once again, am so grateful for the support I have around me and have learned a few things: OxyContin is the extended release version of oxycodone. The dosing for...