CT Scans #6,Update-Update

     On Friday I saw my oncologist and asked him about my recent abdominal CT scan. My last blog mentioned that the scan report noted several tiny "hypodense lesions" on my liver, which are too small to characterize. Not knowing what hypodense lesions are, I optimistically dreamed that they are liver tumors that are shrinking away.  

     When my doctors compared these scans to previous scans, it looks like the hypodense lesions are, in all likelihood, shrinking tumors.  My doctor said that the multiple tumors I had in my liver have distorted its shape, but it appears the tumors continue to be fewer and much smaller.  Wa-hoo!

CT Scans #6, Update

     Prior to this set of CT scans, every three months I'd go in for CT scans of my chest, abdomen and pelvis.  The point of these scans is to see if my oral chemotherapy, Xalkori, is still working by looking inside me; counting and measuring the tumors in my lungs, liver and bones, then comparing them to scans I've previously had.  I like the idea that we are looking for new cancer 

growth, which would let me know that Xalkori has stopped working, so that I can start on a new chemotherapy in the earlier stages of the new growth.  What I don't like is the amount of radiation I'm exposed to with each scan.  So, since I've been doing pretty well, I negotiated with my oncologist to have this set of CT scans at 4 months.  Even though I already have cancer, I figured that if I spread out the amount of radiation I receive from all these surveillance CT scans, maybe...just maybe...I might reduce the odds of my existing cancer getting worse or sparking new cancers.  Who knows if my thinking is right, or not...but it makes me feel better and my oncologist went along.  

     Yesterday I had my usual scans.  Today I received an email from my oncologist letting me know that, "Everything looks stable, which is great news."  There were no lung nodules or masses seen and no new bone lesions were noted.  There was a note about several tiny "hypodense lesions" seen on my liver, but they are too small to characterize at this time.  I'm hoping that these hypodense lesions are tumors that are shrinking away. I have an appointment with my oncologist later this week, so I'll ask him more questions about my liver and who I can ask to review the films for more information. I'll keep you posted.  

     In the meantime, here's how I feel:  
                

http://www.youtube.com/watch?v=y6Sxv-sUYtM&feature=kp

KEEP CLAPPING!

The Affordable Care Act and Me

      As most of us realize, the Affordable Care Act [ACA], aka Obamacare, is a huge overhaul of our health care system.  Since it's so new, right now there's no way of knowing how it's working, let alone, how well it's working.  Other than the botched roll-out and the more recent reports of how many Americans are enrolling, I've heard very little.  My experience with a tiny portion of the ACA has made a huge difference in our lives.      In the past, I've always received my health insurance through Wynn's work.  I suppose it's because his office has a relatively small number of employees, but the premium and annual deductibles are both high.  Given my significant and expensive diagnosis, during open enrollment at my work last Fall, I signed up for my own policy, so that I'd have double coverage.  Prior to this year, I would not have been insurable, even in a group policy, because having a cancer diagnosis would have been a "pre-existing condition".  Under the ACA, however, there is no such thing and I now have this added insurance.  After the 1st of January, I presented my second Blue Cross Blue Shield insurance card to my oncologist's front desk receptionist.


     Each month I call 'my guy' at the specialty pharmacy, which is through my oncologist's office, to order my Xalkori prescription.  (You'll recall that Xalkori costs $14,700/month.) Last year, after meeting our deductible, my insurance, through Wynn's office, covered the entire cost of my medication.  

     In mid-January of this year, I made the usual call to order Xalkori and later in the day, received a call letting me know that there was a change in my insurance so my pharmacy co-pay had increased...to $6,200.00 a month!  I clarified that this wasn't my deductible and was told it was my new pharmacy co-pay.  I also clarified that the specialty pharmacy knew about my new secondary insurance, which they did not, so I added that information.  The next day, 'my guy' called letting me know that he submitted my Xalkori prescription claim under my new secondary insurance policy and the pharmacy co-pay was "much better"... down to $35.00 a month.  A $6,165 per month difference!  Although thrilled, I wonder how there can be such a huge difference...both policies are Blue Cross Blue Shield products?!   Perhaps it's because Wynn's office is small and my employer is a health system with many more employees...but I really have no idea.

      I realize that timing is EVERYTHING.  Had the ACA's "no pre-existing condition" clause not kicked in this year, I would still only have insurance through Wynn's office and paying $6,200.00 every month.  That's $74,000 a year!  Most people don't make that much annually.  That's more than medical school tuition.

Japanese Lucky Cat

      Once again, I must say..."Have cancer, feelin'    lucky".

Nothing Like Old Friends

     For the most part, having cancer really sucks.  I've done my best to incorporate my diagnosis into my life, constantly trying to gain, regain or maintain my "life's balance."  Not surprisingly, having a significant illness has made me more keenly aware of my relationships, including the value of my friendships.  Although I still love meeting new people, I am very sentimental, emotional, and protective of the circle friends I have been lucky enough to surround myself with for years.  Part II of our winter vacation was spent in the San Francisco Bay Area visiting long-time friends.       

Sather Tower aka the Campanile

     When we take a ski trip, we usually go to the mountains for a week, skiing 4-5 days.  This year, we planned 3 ski days and spent the balance of the week meeting up with friends.  It worked out well because I was a little nervous about getting hurt on the slopes anyway, and since my legs get pretty fatigued after 2-3 days, it made sense.  The skiing portion of our trip was spectacular...Lake Tahoe always is. The visiting friends portion of our trip was even better.

Nina, Wynn, me, Vicki, Andrea, Gene, Laurie

     We made a quick stop at the University of California, Berkeley, (my alma mater), then Wynn, Nina and I stayed with Vicki and her daughter, Sarah, in their Belmont home for a couple of days.  We met Andrea, Gene, and Laurie in Half Moon Bay, ate at Sam's Chowder House on the Pacific Ocean and

Wynn, Vicki, Laurie, Nina, Sarah, Gene

walked on the beach.  Vicki's home is so warm and  inviting, and it meant so much to me that Andrea, Gene and Laurie drove from all over the Bay Area to meet us for the day.  It started out a little foggy, but the sun broke through, just as old friends walked together...as it should have.


            

Sharon, Ronnie, me, Wynn

Mary and me

Dahli, Sumi and me

                 Going back into my childhood, we also visited with family friends who used to live in Omaha and who moved to the Bay Area many years ago.  The matriarch, Mary, is now 94-years-old, has known me my whole life, and is a dear friend to my mother.  I couldn't help myself...seeing Mary brought tears to my eyes.  We were so happy because several members of Mary's family came to meet us, (Sumi, Dahli, Sharon, Ron, Reina and Jana).  Our family friendship goes back to 1955, pre-dating me.  Sumi and Mary loaded us up with Japanese treats to share with my mom.  Can't beat that!


     I also met with Dana and her son, Charlie.  For some, unknown, reason I didn't take a picture of them and their adorable house in Menlo Park.  I figure that I need to go back and do that sometime soon.  Thanks for letting me hang out with you for a few of hours.   

     The feeling of connection to friends who pre-date my children and my marriage to Wynn starts in my chest and radiates to all parts of my body.  Along with the friends we connected with on this trip, I...we...have many friends who have extended their love and support to me and my family.  You folks remind me of my roots, define who I am, help me achieve the balance I'm always striving for, and make having cancer less sucky. I am so grateful you're all in my life.  

A Long River in Africa...denial.

My first selfie.  

Lake Tahoe from the top of a ski run.

     It's a strange thing...I know I have stage IV lung cancer, and I must be in some degree of denial. 

     Each winter, for the past 18 years, or so, my family and I have taken a vacation to the mountains to get several days of downhill skiing/snow boarding in.  Last winter was an exception.  A year ago I was in the throes of my lung cancer drama, too sick (and weak) to think about leaving my house.  

Emerald Bay at Lake Tahoe

     This year has been much different. However, because of the metastatic disease in my bones, I couldn't get any of my many doctors to give their blessing about our plans to downhill ski.  Eventually they acquiesced and allowed me to exercise some patient autonomy because I assured them I'd be cautious.  All of my doctors also seemed to want be supportive to me, knowing how much we love snow sports.  I also realize that no doctor, in their right mind, would tell a stage IV cancer patient that downhill skiing is a good idea.  Of course, I don't want to break any bones.  The thought of it makes me crazy, but I was reassured that if I did, the fracture would eventually heal, although it would likely be a longer than usual recovery.  After weeks of mental gymnastics about the risk of a fracture verses the joy of skiing in Tahoe, I decided to chance it.  

Nina, Me, Mike, Ann

     At Wynn's suggestion, we opted to ski in the Sierra Mountains this year because they are at a little lower elevation than the Rockies, where we usually go. Because of his work schedule, Nathan didn't join us.  However, our travel buddies, Ann and Mike came.  If you haven't been to the Lake Tahoe area, put it on your bucket list.  It's  truly one of the most beautiful places in the world and one of my favorite places to be.  

Nina boarding at Heavenly

      We skied Heavenly Resort, which is amazing because you can ski and see Lake Tahoe at the same time. This region has been in the middle of a year-long drought, but the Sierras had a storm the week before we arrived and the snow conditions were much better than we expected.  

South Fork of the American River

     I am a little worried that I'm also losing credibility.  I really do have stage IV lung cancer.  I'm not a con artist.  I'm a lung cancer patient who is fortunate enough to get sick at a time when new cancer treatments are available and are covered by my insurance.  (More on that in another blog.)  I'm fortunate enough to be responding well to my treatments; so well that I get to ski.  Since the beginning of my cancer odyssey, my goal has been to live as "normally" as possible.  Skiing with my family is part of that effort. Either that, or I'm in massive denial. 

[P.S.  I had two falls.  One slow motion, tip-over and one genuine face-plant.  No breaks, no injuries.  Whew.]