A New Year!

     It was December 14, 2012 that I took my first step on this unexpected cancer journey.  Sheesh...what a year it's been.  As I look back over the past 12 months, I'm surprised how I feel about them.  It's not all doom and gloom.

     Although the peaks and valleys of this year's highs and lows have been extreme, the net amplitude has been much like other years.  No doubt this has been a very challenging year for my family and me, but in looking back, I don't think it's been more difficult than other difficult years I've weathered before.  The years that Wynn's grandmother, my father, and Wynn's mother died were very traumatic times for us.  The grief of those losses lasted for many months and rather than just disappearing, that grief seemed to only be able to slowly fade away as time passed. 

     
     When I first learned of the advanced stage of my cancer, I grieved.  I initially gathered information from the internet and expected to live no more than a year.  Soon after getting diagnosed, I was on the medical Autoban getting blood drawn, biopsies, CT scans, and MRIs.  In the mean time, I was on a traditional IV chemotherapy that was draining me of both energy and hope. 
 
     But, by the beginning of March, I was on an oral chemotherapy that has given me the opportunity to feel like I am truly in this game...if not to win...I have the confidence to be able to bob and weave my way as close to the end-zone as possible, for as long as possible. Unlike other times of grief, this time my grief seemed to be lifted away with every day that I gained normalcy on Xalkori.

     So, the really awful part of my 2013 lasted about two-and-a-half months.  Since then, my overall feeling of well-being has only gone up.  The last nine-and-a-half months have been pretty good.  Not great, but pretty darn good.  Good enough to look forward to 2014!

     From the bottom of my heart, I wish you all a Happy and Healthy New Year!! 

It's My Birthday...

...and I am so glad to be here to celebrate!

I hope you can join me...do a dance, raise a glass, smoke a joint.  Whatever you would do to celebrate, please do one for me!

Have Cancer...Giving Thanks and Feelin' Lucky

     Thanksgiving is a time for most of us, including me, to reflect on our lives and take note of the things that we are so appreciative of...supportive family, wonderful friends, great work colleagues.  This year is no different for me, except I've made note of a new category of items to acknowledge and give thanks for. 

     I am a true benefactor of medical research, clinical trials, and previous lung cancer patients who bravely participated in research protocols to find new treatments for those coming after them. When one agrees to be part of a Phase I clinical trial, you become one of a small group to receive a new treatment so researchers can determine proper dosing, coupled with documentation of all side effects.  In my language, this means they don't know how much to give you, how often, nor what bad things may happen.  Some Phase I trials are terminated prematurely because early on the side effects are recognized to far out-weigh any benefits.  As I see it, Phase I clinical trial participants are courageous heroes and I am so thankful for them. 

     My particular medication, Xalkori, is still in clinical trials and I am not a participant.  Nine months ago, when I learned I have a ROS1 tumor mutation, my oncologist wrote a prescription and, after a few days of wrangling with our insurance company, I received it. I wondered how I was able to get it because the FDA doesn't usually approve medications until a clinical trial is completed.  I'm told that the participants in this trial were doing so well on Xalkori that the FDA 'fast-tracked' the medication, making it available sooner to everyone who can afford it, or who has good medical insurance coverage. (I fall into the latter group.)  The FDA 'fast-tracked' approval for the use of Xalkori in November, 2012 for a mutation similar to ROS1, and in early 2013, approved it for use in ROS1 patients.  The timing couldn't have been better for me...I started taking it in March of 2013.  

     There are two new 'second generation' treatments that are in clinical trials now which hope to be used in patients when the targeted oral therapies, like Xalkori, stop working.  I recently read that one of these new treatments may also be fast-tracked by the FDA and may be available in, as soon as, 3-6 months, (or maybe, as long as, 10-12 months.)

     So far in my journey, I have been able to benefit by being just behind the research curve.  That is luck.  Pure and simple luck.  There are so many advanced stage lung cancers patients who proceeded me by less than a year who were not given medications like Xalkori because the information from the clinical trials wasn't known yet. I'm really hoping information from the 'second generation' medications becomes available soon.  And if not, I hope to be brave enough to participate in a clinical trial to "pay it forward", as it is said.   

     The other day, Wynn and I were talking about the timing of the FDA approval of Xalkori and how it couldn't have been more timely for me.  

Me:  "I am a very, very lucky person."
Wynn:  "So am I."

...and that is another reason I am feeling so lucky.  I love my husband. 

 

     

CT Scans #5, Update

    

     Just got a call from my oncologist's office.  Yesterday's scans show that my bone lesions are about the same, (a good thing), and the lesions in my liver are better...meaning fewer and smaller.  The most relieving news I received today is that there is no evidence of metastatic disease in my brain.  WAAHOO!!  There are lesions in the bones of my neck, but they were there from the beginning.  
   Today is a good day for me.  Maybe I'll sleep better tonight. 

     

Scanxiety

     It's 4:00 AM and I'm lying awake thinking about my upcoming day.  In several hours I'll be having follow-up CT scans of my chest, abdomen, and pelvis to see what's happening inside me.  Ideally, there will be fewer tumors and the remaining ones will be smaller.  (Ideally, ideally...they'd all be gone, but I know better so I just hope for fewer and smaller.). 

     Along with CT scans today, I'm having a brain MRI to make sure that the cancer hasn't spread  there.  Although I feel like Xalkori has been working well for me below my neck, it's known that it does not cross the blood brain barrier. I'm told that researchers think that while Xalkori is working, the risk of brain mets is probably reduced, but certainly not zero.  

     If I haven't mentioned it yet, I'm really, really afraid of getting brain mets. Aside from associated (major) headaches and seizures, I'm so afraid of anything that will mess with my ability to think and communicate.  The good news is that brain mets can now be treated with a non-surgical procedure called gamma knife, with good success.  I don't know much else about it, but am relieved that if I am found to have brain mets, there is something to do about them.  

     "Scanxiety" is a term well known to cancer patients.  These periodic imaging tests are scary and nerve-wracking.  Despite Xalkori's ability to help keep my cancer at bay, it won't work forever.  I just hope today's scans show me that it's still working...for now. I should get results tomorrow, or at the latest on Monday.  

     Stay tuned.

Who'd-a-Thunk?

     I am a board certified, licensed genetic counselor.  In Illinois, to have a license, you must be nationally board certified. To maintain certification, one must demonstrate, periodically, that one's knowledge is current.  One way this can be done is by obtaining continuing education units, (CEUs), which one gets by attending approved educational conferences in genetics and genetic counseling.  Re-certification takes place every ten years and one must accrue 25 CEUs in the intervening ten years.  I'm up in 2015. The other way to get re-certified is to take the board exam again. [I'd almost rather have cancer.]  Since I promised myself that I would never take the  exam again,  I have diligently attended annual educational conferences to accrue, at a steady pace, the needed CEUs so that I'd have 25 by 2015.  Going to these meetings is expensive...flights, hotels, conference costs, CEU fees, etc. However, going every year meant that I got to learn cool new stuff and, more importantly, I got to share a hotel room with my grad school buddy, Stef, for 4 or 5 days and spend time with dear friends and classmates, usually in a nice city.  Mostly, I thought of these trips as the cost of doing business.  Makes sense, right?

     Well...at the end of 2012, when I was diagnosed with really bad cancer, I thought I'd never have to worry about CEUs again.  I considered it a cancer "perk."  I did not attend any educational conferences in 2013 and have not earned one CEU this year. 

     Well...now that I'm doing well on Xalkori and I've exceeded the median life-expectancy of someone with stage 4 lung adenocarcinoma, it occurred to me that I should probably start worrying about CEUs again.  If I'm doing well, I'll want to be working, so...I'll still need my license. Additionally, I recently had my annual gyne exam and my oncologist ordered a mammogram.  I should probably ask him about starting to measure my cholesterol level again.  Eleven months ago I was certain that I was going to die of lung cancer.  It was a hell-ish beginning to 2013.  I don't think anyone, (my doctors, me) ever thought that I'd have to start screening for things that could kill me other than lung cancer...let alone worry about CEUs.   Who'd-a-Thunk! 

 

Eye Exam Follow-up

     

      


          I had a six-month follow-up eye exam today.  The retinal lesions that were present in both my eyes 10-11 months ago are all gone.  Whew!  Good thing...if they'd gotten worse, I would have slowly lost my vision.  I don't know if it's the Xalkori that's keeping the retinal lesions away, or what.  In any case, I'm very relieved.

       

Italy in Autumn

 
     A few days ago, Wynn and I were flying home from a trip to Italy.  It was a long day of travel and the end of an amazing journey.  I never thought I'd be able to experience an Italian journey within my cancer journey.  A few months ago Wynn suggested going to Italy because I was doing well and he feels that we should do as much as we can, while I can.  Having never been there, I was totally on-board with the idea, but also strapped with worry...What if we get there and something happens?  Will I be able to get home OK?  What if we put out a lot of money and at the last minute my health doesn't allow us to go? Trip cancellation insurance is hard to get and expensive when one has cancer.  Wynn has a wonderful way of moving forward when I'm stuck in a place of indecision. He ignores me...you know, in that "loving" way only a husband can.

 

Mike, Ann, Wynn and me at St. Peter's Square

     In the past, we have always made our own travel plans.  This time we joined a Rick Steves (the PBS European Tour Guide guy) tour.  Wynn liked this tour because the group sizes are small and offer guided tours in the morning.  We were on our own to explore in the afternoon, or were on a bus or train to our next destination. Either way, I would be able rest, if needed. We went with our dear friends, Ann and Mike. Aside from having great folks to share this trip with, it was comforting to know that if I needed to rest, Wynn could still see the sights with them. We were also fortunate because our tour group turned out to be a great collection of interesting, active and chatty folks from all over the U.S.  (Because Rick Steves Tours tells you the level of activity you will encounter on their tours, and more importantly, that you will be carrying your own luggage throughout the trip, it seems that there's a certain profile for their customers.) While we had a great guide, Daniela, who accompanied our group throughout the tour, we also had local guides at each major site, (Vatican City, Rome's ruins, Volterra, Lucca, Ufizzi Museum). Included was a 2-hour wine tasting lecture by a sommelier in an ancient cellar in Tuscany.  Each of the local guides was outstanding in the depth and breathe of their knowledge, and in their ability to keep us engaged and entertained.  [We highly recommend this tour and would do another Rick Steves Tour in a heartbeat.]

     We started in Rome where we attended Sunday mass at St. Peter's Square. 

Inside the Vatican

Although we could see Pope Francis, we were so far back in the crowd that he looked like a speck.  We walked further back on the Square, where we discovered a simulcast of the mass on a Jumbotron.  Nice. The Vatican, St. Peter's Basilica, and the Sistine Chapel, as you can imagine, were spectacular.
      
     The following day we saw the ruins, including the Colosseum, the Forum and Palatine Hills. About 1/3

The Colosseum

of the Colosseum still stands, but you can easily tell how incredible it must have been in its day.  


     The floor of the Colosseum is no longer there, but the Italians have placed a partial floor so visitors can get an idea of what it was like.  Beneath the floor is a series of rooms and hallways that held exotic wild animals, gladiators, etc., which rose through doors in the floor.  [Note: the space under the floor and the scale of this structure - compared to the visitors.]   
 

Inside the Colosseum

      Admission into the Colosseum for events is said to have been free and anyone could come.  Apparently it was the Emperors' way of keeping the population happy, and when the masses were happy, the Emperor was less likely to be ousted or killed.  

     Palatine Hills Palace is the ancient Emperors' residence.  Despite living in a suburb with the same name for nearly 20 years, it didn't occur to me where the name came from.

Palatine Hills

    
     From Rome we traveled to an ancient Etruscan city called Volterra.  

Volterra

The Etruscans pre-date the Romans and built a wall around their city to defend themselves from the Romans.  The city is on a high hill in Tuscany and the lower hills and valley below are breathtakingly serene.  The city itself is small, but rich with history, art and charm. There are wonderful local artists and the town is known for its alabaster craftsmen.  

       
     We stopped for an afternoon in Lucca, another small walled city in Tuscany.  

Walled city, Lucca

The cool thing about Lucca's wall is that it's still entirely intact and there's a path on the top of it so one can run, stroll, or ride a bike around the perimeter of the old city. We rode bikes, of course.  Lucca is Pucini's home town...for you opera buffs.

Varnazza

     

     The Cinque Terre region was one of our favorites.  It's on the Mediterranean Sea and part of the Italian Riviera. There are five small towns that one can hike to, or they are accessible by train.  There's a boat that connects 4 of the 5 towns. Bring a swimsuit, or not, they're optional on the beaches there.     

The Duomo in Florence

     Ahh, Florence...or Firenze, as the Italians say.  What an amazing city of art. The Duomo, THE  Catholic cathedral in Florence, is ornate in every way on the outside.  The inside is much more understated in it's decor and is very beautiful in its simplicity.

     Michaelangelo's, the David, waits for visitors in the Academy building.  There's no photography in the Academy.  If you want a picture of the David, you have to buy a postcard in the gift shop.  

     The Ufizzi Museum and the Pitti Palace Museum are incredible places to see paintings and sculptures by the great Renaissance masters and others.  Much of the art in Florence was acquired by the city in a donation from the Medici Family.  Although gluttonous in their over-the-top wealth, they owned a lot of incredible art that was well taken care of.  Because of families like the Medicis, their art holdings (of which there are thousands) are available to the public today.

     The Rick Steves tour ended in Florence.  Mike, Ann, Wynn and I made our last stop Venice.  There were many things I didn't know about this city:  1) It's

The Grand Canal

an island, 2)  About 1,000 years ago, the Venetians clear cut trees on the mainland and drove these wood pilings into the hard clay that lies beneath their city.  On top of the pilings, they erected their buildings, which still stand today.  3)  As long as the wooden pilings stay underwater, they will not rot - so they've been there for >1,000 years.  4) There are no cars in Venice.  You can arrive by train or plane.  To get from our hotel to the airport, we took a water taxi.  
                                                                                                 

             We were warned that the canals often have a bad odor, but perhaps because we were there in the Fall, we did not have that experience.  Gondola rides are 80 euros for 40 minutes, with up to six passengers, until 7:00 PM.  (Nighttime rides are 120 euros.)

The Bridge of Sighs

     This was a trip of a lifetime and I realize how fortunate I am.  I have a husband who wants to live life with me for as long as possible.  Wynn maximized the possibilities for seeing and doing as much as possible, while allowing for rest time whenever I needed it.  I hope, with all my heart, that we will have more chances to have shared experiences in new places.  Thank you to Ann and Mike, who made adjustments for me during this trip.  Let's find another place where wine is cheaper than water and go there next!

Government Shutdown Trickledown

     Today was my monthly appointment with my local oncologist.  I continue to be doing well on Xalkori and for now it appears that my disease is still stable.  Other than some mildly increasing bone pain, I feel pretty well.  

     However, since the beginning of the government shutdown, I've been really, selfishly, upset.  There are a couple second-generation cancer medications being studied under government backed, (NIH), research protocols that I've been following, with great interest.   It's possible that I could need one of them in the future when Xalkori stops working for me.  These medications are in Phase 1 and Phase 2 clinical trials and while our government is shutdown, the  clinical trials are also shutdown.  I've emailed my Congressman and hope you will too.  Go to House.gov and enter your zip code to find who your Representative is...then please email him/her and let them know how this shutdown is affecting the ongoing medical research needed to help keep Americans, like me, alive.  Imagine how it feels to be the person who has exhausted all currently known medications and really needs these new drugs.  I know it could be me, or someone I know, or someone you know, or you.  

     Thanks.  

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...

The State of the Lunion Address, June 2013

(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'm at the tail end of weaning off of oxycodone, which has been a long and painful process. I feel virtuous getting off of oxycodone, but am experiencing some bone pain, mostly in my ribs, (which isn't bad, given I have mets in most of my bones.) Right now, ibuprophen controls the pain well enough.  I get monthly IV infusions of Zometa, which helps to reduce the risk of bone fractures.  My oncologist is optimistic and only wants to see me monthly.

My Family:
Wynn continues to be a constant in my life, (before and), since my diagnosis. As my overall ability to re-engage in life has improved, he encourages me to do as much as I can.  When I'm tired, and cranky, it sometimes feels like he's pushing me, but I realize that he just wants me to be well.  My love for him is unbending.   

Nathan finished the school year working as an assistant in a junior high class for autistic students.  He left home earlier this week to return to UW-Whitewater to take his last class before graduating college.  He's worked hard for this degree and is very motivated to be done.  Nina took the MCAT last month, did well, and is in the process of applying to medical schools. She's working as a medical scribe in an ER, getting great exposure to and experience in emergency medicine.  When I first discovered my cancer, I was so afraid my diagnosis would derail my children's plans.  Six months later, they are both moving forward, as they should be.  My relief is palpable.

My Work:
A couple of months before my diagnosis, I had committed to working at Loyola as a prenatal genetic counselor, 2+ days a week, along with my half-time job as a pediatric genetic counselor at St. Alexius.  Sadly, I was not able to keep my commitment at Loyola, (so sorry Kelly), but have continued to work at St. Alexis. My co-workers and the leadership at St. Alexius have been amazingly supportive.  Since Xalkori, I've been able to work half-time.  When I'm working, (and sleeping), I don't  think  about being sick, so it's great to be there.  

My Workouts:
I am now trying to exercise more regularly.  It's been difficult because I'm often exhausted.  Brigid and I are back to TRX classes on Saturday mornings and Wynn and I ride our bikes 1-2 days a week.  Daily calisthenics, yoga and stretching are a priority.

My Outlook:
Having cancer sucks.  Although I never have days that I feel "great", I have many days that are pretty darn good.  I feel good enough to work a little, exercise a little, socialize and do day-to-day chores.  I get teary eyed on a daily basis, for one reason or another.  Mostly I get sad because I realize that although things are going well now, there is no cure for me.  The uncertainty of how long Xalkori will work for me weighs heavily on my mind.  I am hopeful that it will work for a long time and even more hopeful that new medications, which are in clinical trials now, will be available to me when Xalkori stops working.  In any event, I will be on some type of treatment the rest of my life.  

I understand that some folks who have limited time to live decide to quit their jobs, travel, spend money recklessly, and rack up debt they won't have to worry about.  Others live for normalcy.  That is me.  I am grateful that I have the love and support from my family and friends to help me be as normal as possible.

Thanks everyone!

 

Wondering if This is a Miracle?

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 mutations, ROS1 and cMet, in 7-10 days.  If I had either of these mutations, I could start an oral chemotherapy ASAP.  The second lab, Lab-B, would do the pan-cancer testing, which would include ROS1 and cMet, but the entire testing result (for ~280 mutations) would take about four weeks.  

I was all for sending a sample to Lab-B to get information about all DNA mutations known to cause cancer, but was hesitant to send a sample to Lab-A.  The chances of me having ROS1 or cMet were ~1%, the test costs $thousands$ and I wasn't sure my insurance company would cover the cost of two lab tests that tested for the same thing.  After long discussions with Wynn, he talked me into sending samples to both labs.  

You know my good news that I have ROS1.  [BTW, I also have cMet.]  Immediately after receiving the results from Lab-A, the wheels were set in motion for me to get insurance approval for an oral chemotherapy called Xalkori.  It took over a week to actually get the medication, but I started it as soon as I could.  

Then, the results from Lab-B came back and here's where my story gets wonky:

Although Lab-B said that I have cMet, they did NOT find that I have ROS1.  I happened to have an appointment with my oncologist the day the results came in and immediately panicked when he told me about the discordant results.  My head swirled with thoughts.  Shit...we were treating the wrong thing with a drug that costs $14,000/month and I was going through hell managing the side effects. My oncologist reminded me that there were studies showing that cMet also appears to respond to Xalkori and that I should continue taking it while he tried to sort things out.  He had already called the directors of Lab-A and B and was waiting for calls back.  

In the mean time, I went back and read the lab report from Lab-A and committed myself to reading every word on the report from Lab-B as well. (Pan-cancer testing lab results are >30 pages long.)  Lab-A called my result positive for ROS1 because they found 27% of the cells tested to be consistent with a ROS1 mutation, (anything over 20% is considered abnormal.)  Lab-B called my result negative for ROS1 because they found 0% of cells to be abnormal.  However, in reading every-single-word on the Lab-B report, I noticed, in small print, that my ROS1 testing was sent out to a secondary lab and conducted at Lab-C.  I called my oncologist, who immediately called the director of Lab-C.  The director at Lab-C re-ran my ROS1 test and in April issued an "Amended Report" saying that I was found to be positive for ROS1, with 85% of my cells tested being consistent with a ROS1 mutation.  Hmmmm 0% to 85%...how could that happen?

So here's the miracle part:

If I had never had a liver sample sent to Lab-A for the quick turn-around-time for ROS1 and cMet, I would have never known that I actually have ROS1 and cMet.  Consequently, I would never had started on Xalkori.  I'd still be on a traditional IV chemotherapy and probably not doing well...certainly not well enough to be back in the gym.

Thanks to my oncologist for wanting to send the sample to Lab-A and to Wynn, who convinced me that I should "just do it."

 

   
I got this shirt from my dear friend, Claudia.  (Thanks, Claudia!) Much more than being Wonder Woman, I find myself to be a Wondering Woman.  Under the cap, my hair is slowly growing back.  It's still too short for me to feel comfortable to go without a wig or cap. 

First Day Back

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, but after months of dizziness, nausea, vomiting, fatigue and generally feeling like crap, even my "pollyanna" hope was taking a hit.  In the few months since I started Xalkori, most of the side effects have eased or gone away.  Now it's really only the dizziness [which goes away 1-2 hours after taking the pill] and fatigue that bother me, and who knows if the fatigue is because of Xalkori or because I have stage 4 lung cancer.  Early on, back in December, a prominent oncologist told me that if I "let the fatigue take over, it will take over."  He made me feel like I could help myself by staying active.  

With that in mind, I put in an hour today, and plan to get into a regular routine.  The body-portion of my mind-body-spirit triad has really taken a beating, not only from cancer, but also from all the medications, x-rays, etc.  I'm hoping that I'll be able to work on my body again so that all parts of my triad can be strong again.  

Wish me luck...

Help With Oxy Weaning

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 oxycodone is one pill every 4-6 hours to control pain, while OxyContin only needs to be taken every 12 hours.  OxyContin releases the medication into our system slowly by way of a unique outside coating. Users should never chew, cut, or crush an OxyContin pill, because the entire dose would be received immediately, which in some cases, could be a lethal dose.  So, the first thing W.H. told me was to never cut an OxyContin pill, as I had been doing for the past several weeks. 

I also learned that Asians are particularly sensitive to opiates.  In the future, if I need to restart OxyContin or oxycodone, I’ll ask my oncologist start me on a lower dose. 

W.H. had me switch to the immediate-release form, oxycodone, which is not only safer than shaving off pieces of OxyContin with a razor blade, but will also allow me to reduce my intake more easily.  So now I’m taking 2.5 mg, 4-times/day.  I’ll do this for a week, or so, then reduce to 2.5 mg, 3-times/day, and so on.

Now that I’m on such a low dose of oxycodone, I’ve realized that I’m not as ‘pain-free’ as I thought I was.  (A real bummer.)  Although it’s mild, I have some bone achiness that I thought I didn’t have.  I’ve been taking ibuprophen (Motrin) to manage my pain sometimes…but not often. It’s a little disheartening because I really thought that the new oral chemo was working in all ways.  So my new hope is that, with time, the new oral chemo will also take away my bone achiness. 

A few of months ago I started taking advantage of the Cancer Wellness Place in our suburb. Every two to four weeks, I meet with a cancer counselor, Kathy, who I find so helpful.  Along with being a counselor, Kathy is a nurse and has personal experience with the loss of her husband to cancer.  Going to see Kathy is part of balancing the mind-body-spirit triad I mentioned a few blogs ago.  Kathy asked me an interesting question the other day, “So what’s the psychology behind needing to get off of oxycodone?”  Given that I still have some pain, I could choose to stay on oxycodone, instead of going through the long, (and sometimes painful), weaning process and then taking ibuprofen.  She also asked, “Does it make the cancer seem less severe if you’re able to manage your pain with an over-the-counter medication?”  The answer is yes.  Not only do I not want to be on a narcotic, I feel like my disease is less severe if ibuprofen takes care of my pain.  Although I have no idea how well Xalkori will work for me or for how long, for now I like the idea that I may be moving toward control of my cancer.  I’d love to have total control of this disease, but that seems unlikely.  So I continue to Keep Calm and….you know.