Radon in My Life

     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 10.8 pCi/L in the basement.  The EPA recommends fixing your house if the level is 4.0pCi/L or greater. [Radon levels are usually highest in the lowest part of a house.  The radon level, in general, on the floor above the lowest part of a house, is 50%.  For each floor above the lowest part of a house, it continues to be reduced by ~50%.  Therefore, our first floor is ~5.4 pCi/L and our second floor is ~2.7 pCi/L.]

     With the help of Angie's List, Wynn and I have arranged for radon mitigation of our house next week.  The radon guy will first seal around our sump pump because radon gas can enter our house around it.  Then he will drill into our foundation and run a PVC pipe up through our house, into the attic, and out the roof.  There will be a small continuous fan the draws the radon gas out from our foundation and into the atmosphere.  Like this:

 

We had three estimates which ranged from $1,000-1,200 for mitigation.  [The test kit was ~$11.00.  I had to send in the test kit vials to a lab, which cost $30.00.]  Once the mitigation system is installed, I'll test it again.

     I don't know that if there was less radon in my home I wouldn't have gotten cancer, but looking forward, I'd like to protect my family as much as possible.  I'd like that for you, too.  Please consider testing your home.  

*Note:  We had our house tested for radon when we moved in back in 1994.  At that time, the radon level was OK.  Things change.

Love, Luna

Information on an "As Needed Basis"

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.  He ordered a chest X-ray to make sure I didn't have any rib fractures.  The good news is that I don't.

The not-so-good news is that I now have some bones changes that are more associated with pain and fractures.  Rats.  Initially my bone mets were of the 'blastic' variety.  Blastic bones lesions are areas of over calcification and are less associated with fractures. The other type is called 'lytic' bone lesions, which significantly weaken the bone matrix, causing them to break easily. Of the two, blastic is the way to go. What I didn't understand, (someone probably told me this earlier but it didn't stick), is that blastic mets can change into lytic mets over time, and this is what's happening to me.

I met with my oncologist wanting to know if this now means that my oral chemotherapy is no longer working. He gave me the definitive answer of, "Not necessarily." Last month my most recent scans indicated that my disease is stable.  The fact that I am experiencing some bone pain doesn't necessarily mean that my disease is progressing, but it does mean that the progression of bone changes is continuing. I now take more calcium and vitamin D supplements, along with a monthly IV treatment, to help reduce my risk of bone fractures.  

I have learned that, early on, folks with bone mets often don't have pain. (I was pain-free for many months. Other folks, however, discover they have bone mets due to a fracture.)  The pain then comes and goes, eventually being more present than not.  Continuous pain is why medications like Oxycontin are available to cancer patients. This time I have been able to treat my rib pain with ibuprofen and right now I feel a lot better.  However, these past two weeks gave me a taste of what may lie ahead for me.  Needless to say, it makes me sad and a little scared. 

I have had to take in this type of information slowly, on an 'as needed' basis.  Now that I know, I'll be better able to prepare...meaning that I'll have my bottle of Oxycontin close by.  

 

  

P.S.  Still working, exercising (more gently), and other regular stuff.  

Never to be NED

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.  No Evidence of Disease.  

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.  Oftentimes, especially when I'm feeling good, I forget that.  

I frequently find myself saying, "It could be worse." Having stable disease allows me to work, exercise, see family and friends and get stuff done around the house.  It's not NED, but it's not bad. 

CT Scans #4, Update

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.  Many of the drugs have significant side effects, but we keep taking them despite knowing if they are working or not.  Then, after 2-3 rounds of an IV chemo or 3 months on an oral chemo, we get scanned to see what's happening on the inside.

Since the beginning, I've had four imaging sessions. The first was to make the diagnosis and the last three have been for medication monitoring.  The second set were monitoring scans that told me that the initial IV chemos that I was on weren't working.  The third set told me that the oral chemo I was switched to was working. 

Earlier this week I had my latest CT scans which tell me that the tumors in my liver appear to be smaller and a little less numerous.  It looks like the size of my liver is smaller than my last scan, suggesting that, overall, the tumors are smaller.  The mets to my bones are about the same.  So, although there was no dramatic reduction in my cancer, I'm relieved to report that, at best, I experienced some improvement and at worst, my disease is stable.  These results, coupled with recent reassuring blood test results and the fact that I feel pretty good, indicate that I will continue what I'm doing, for now.  

And...as usual...I'm keeping calm and carrying on.  

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.  

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.  

 

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...

Ta-dah...