Tuesday, July 23, 2013

Living With Uncertainties

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 control. Counter-balancing daily uncertainties are those things in life that are certain...the "for sures".  If I didn't pass my boards, Wynn would still love me, and if I didn't have an umbrella on a rainy day, I'd get wet.  

Patricia Briggs wrote, "The only certainty life contains is death," which is impossible to argue.  But since life can last a long time, there are a bazillion uncertainties to navigate and when life is going well, who thinks about the certainty of death. 

The most pressing uncertainty I wrestle with is how long my oral chemotherapy, Xalkori, will work for me. These thoughts are almost an obsession.  I've read information about other patients with the same or similar clinical profiles that I have.  One woman reported that she was part of the initial Phase I clinical trial for Xalkori and has been on it for 7 years.  Another man reported that it worked for 5 months and now he is on a traditional chemotherapy.  Most everyone else reported being on it for about 18 mos. to 2 years.  Since Xalkori use is so new and its use with my particular mutation is even newer, there is no background information for me to use to assess my burden of risk. It's just one more thing I'm not in control of on my journey.

There are some promising new medications that are in clinical trials now that are meant to be used when the current oral chemotherapies stop working.  As hopeful as I am, it presents yet another uncertainty...Will these medicines be ready for me to use when Xalkori stops working?

These 'general' certainties in my life have made it a little easier to manage the uncertainties.  They also help me know what to expect:

1)  I love my husband, children, family and friends 
2)  I am loved and supported by my family and friends, and
3)  Wynn will be late.  

Friday, July 5, 2013

How Does a Person Without Means Manage?

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...frustrated that my insurance company declined to pay... felt hassled that I'd have to get on the phone to appeal to my insurance company...and worried that I wouldn't get my refill prescription in time. 

But that's not how it was for me, who is lucky enough to be in a system that can turn such potential problems into minor glitches.  The person in charge of prescription refills in my doctor's office immediately made the needed phone call and pushed the papers for an appeal.  A day later, the approval came through and I picked up my meds without missing a dose.

I realize how fortunate I am.  Not only am I getting state-of-the-art medical care in clean and safe environments, I'm in a system that is, seemingly, trying to minimize as many hassles as possible.  I also realize that my experience is not the experience for many cancer patients, but I sure wish it was...for everyone...privileged and disadvantaged.  


Tuesday, July 2, 2013

No More Oxycodone nor Wig

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 so nervous that I would experience unbearable withdrawal symptoms, that I made sure I had my prescription bottle with me at all times, just in case I needed a little oxy to "take the edge off".  The good news is that I can now leave my house without it.  

My hair is growing back, which I'm really happy about.  It's still short and thin, but long and thick enough to make wearing a wig really hot.  Last week the Chicago area had some hot and humid days that forced me to summon my courage and leave my house without my wig or a hat. Since my hair was growing back in patches and irregularly, I had it trimmed today.  My hairdresser says she can see lots of little hairs starting to erupt and that it should get thicker soon.  I've been taking biotin, a vitamin that supports hair, nails and skin.  (I'm told that other cancer patients swear by it.)  So without further ado...