Sunday, October 25, 2015

Hard times come, and hard times go... Yeah just to come again

I'm a nester.  It's all about comfort for me.  My massage therapist, Marty, begins each session telling me to imagine a place that makes me happy.  He suggests a beach, the mountains, a favorite vacation spot.  I imagine lying on my new couch, with the softest throw ever made and Sadie sleeping on my lap.  It's the best Happy Place I could ever hope for.  Comfort is serving an important role in my life these days.  It buffers what most would see as bad news.

I received the Hopkins interpretation of the scans I had earlier this month in Pittsburgh.  They show new areas of cancer in my lungs, some old areas that have grown, and some that have stayed the same.  The most dangerous tumor in the hilar region that has already been ablated and radiated seems to be stable.  But because it is still active, it's still very dangerous.  Also, it was reported that some tumors in the lining of my lungs (the pleura) are infiltrating my chest wall.  Other scary things are described to the point of being overwhelming. However, everything that's growing isn't growing super fast and nothing is measuring too big to treat. The problem is that there is too much to treat.  

I can't really say that this is a surprise.  I've had bad scans before and somehow my doctors have managed to address everything one crisis at a time.  But now that I have such trouble breathing, the risk benefit analysis of continuing with the Whack-A-Mole approach becomes questionable, as Dr. Georgiades wrote to me.  Every ablation requires a 1 cm. margin that kills healthy tissue to ensure the ablation is successful.  Every radiation plan also kills some healthy tissue and creates scarring as the beams travel to and from the targeted area. Considering all my past procedures, my remaining lung mass needs to be preserved as much as possible (I lost about 30% over 3 surgeries).  

With the shortness of breath and wheezing I now have, I have to consider the impact on the quality of life that more Whack-A-Mole would have.  I'm reminded of Joe Biden.  If I'm going to be in this race, I need to decide if I have what it takes before my window of opportunity closes.  Time for more opinions.  Many ACC patients go to radiation oncologists who offer proton beam radiation. Standard radiation is with photons.  One is just as precise as the other, but proton therapy is a newer technique that eliminates the "exit path" of the beam. "Higher doses of radiation can be used to control and manage cancer while significantly reducing damage to healthy tissue and vital organs."  Hopkins is building a proton center, but it won't be ready until 2017.  There are 15 proton centers in the US and a couple of them have seem many, many ACC patients.  Looks like I'll have a road trip or two to talk to the doctors who have treated so many of my ACC brothers and sisters.

In the meantime, I am having my tumors genetically profiled by two separate labs to determine if I have any cancer mutations.  If I do, there may be a clinical trial open that targets that particular mutation.  I should know the results of these tests in a month or two.  Having one or more mutations doesn't give me more options per se. But it would get me closer to the possibility of finding a drug that might stop my tumors from growing -- or, best case scenario, shrinking them -- for awhile.  Most trial results so far only show that the drug works until ACC finds a way around it.  This disease is a monster.  But it's still a hopeful time for us.  Science is moving so fast, cancer is being redefined by genetic research.  Since there's a lot of money to be made from this, innovation is moving at warp speed.

Back to Marty.  When I shared my news with him, he asked me how I'm coping with it all and if I'm okay.  I really am, for two reasons.  1.  I'm getting used to this roller coaster.  My stomach still lurches as I plunge downward.  But I don't puke with fear like I used to.  I think this is because I have recovered from circumstances that appeared hopeless. Statistically, I never should have lived through leukemia in 2009 or the many ACC battles since then.  2.  I'm focusing on comfort.  My nesting nature is in high gear.  As I slowly taper off steroids (given to see if they help my breathing), my mind spins with ideas for increasing comfort.  I decided to buy an adjustable bed. I often have to prop myself up in the middle of the night to help me breathe, so it made sense. And since I was headed for a hospital bed at some point in the future, why not get a plush, super comfy memory foam bed now, while I can enjoy it? Normal people are getting them, according to the commercials, so I don't feel like a cancer-patient-hospital-bed person.  My new Happy Place, with all its bells and whistles, was delivered on Friday, it fits perfectly in my bed frame, it is beautiful, and my sleep is amazing!  With a wireless remote to control the head, feet and massage features, I'm too happy to be depressed.  Sadie was very suspicious.  I watched with evil curiosity to see if, upon raising the feet, she was cat-a-pulted as a projectile to the top of the bed!  (Thanks, Laura, for the pun.  I'm sure Cheryl will appreciate it.)  

I've found that Retail Therapy is good for my psyche.  Comfort through consumerism.  As I look forward to Thanksgiving with Mary and her family in Pittsburgh for the first time, I can't be anything other than grateful for my new life, regardless of what the next chapter reveals.  As much as people deny it, we're all living on borrowed time.  I just have a little more information on the time I have left than most people do.  Make every day Thanksgiving. Find comfort in your life.  Buy an adjustable bed.