Change...Fear...Anger......

I haven't written about this before because I had to process it first.  According to my latest CT scan taken 11-8-16, my lung tumors are growing again.  Dr. C has added Yervoy (ipilimumab) to my Opdivo chemo regime for the next 4 cycles.  I have had one cycle so far.

Once again, emotions ran strong and took over for a while.  It wasn't the shock and sheer terror that followed diagnosis, this time I had an overwhelming 'angry at the world' feeling because my treatment was letting me down.  Instinctively, for the next few weeks, I let the anger run its course, until it and other repressed emotions were expelled.  Once again, Bernie Siegel's question, 'do I want to live?' had to be examined and answered within myself.  I recommitted to health. 

A big THANK YOU to Mom and my family for putting up with me through the emotional cancer craziness.  I recently found a blog post that best sums up what it is like to have cancer.  It is written by a chemo nurse who was diagnosed with colon cancer.  Here is a link:  https://herecomesthesun927.com/2016/11/14/dear-every-cancer-patient-i-ever-took-care-of-im-sorry-i-didnt-get-it/

lighthouse on a recent trip to Mendocino, CA

 

 

"When Breath Becomes Air"

I just finished reading, or more accurately, just finished sobbing my way through, "When Breath Becomes Air"  by Dr. Paul Kalanithi.  After returning from vacation, my friend, Donna, loaned me the latest popular summer rom-com as she knew I was soon heading out on a bucketlist adventure driving down the Oregon coast and would need a good book to keep me company.  But I wasn't in the mood for a light read.  I rarely am anymore.  I feel like I need to stare down the barrel of cancer, despite the emotional toll it takes.  With that, I plunged head first into the beautifully written words inscribed in the final months of the author's life.

There is a quote in the book that sums up the craziness that you feel when diagnosed with cancer, "I began to realize that coming in such close contact with my own mortality had changed both nothing and everything."  I don't know what next week, next month, or next year will bring, but I do know that I will still need to drag the garbage cans to the curb every Tuesday night regardless. 

Last weekend was an unusually warm October day, and as I was splashing in the pool, I wondered if it would be my last swim.  I tried to enjoy the sensations of the refreshingly cool water against the warm still air.  Every fall, since I moved into my house 16 years ago, I have had a final swim of the season, but will this one be the final one ever?  How do I preserve it, savor it, and make sure I have remembered every last drop of that day?  The birds were chirping and the dogs were laying in the cool green grass, and I was trying desperately to hang onto that warm fall sunlight for as long as I could. 

As much as I tried to stay in the moment, I found myself reflecting on the past few weeks.  First, the trip down the Oregon coast with my sister, Tere.  It was magical and empowering. As with our previous adventures, the weather was glorious, the scenery was stunning, and we managed to have our goofy 'you can't make this stuff up' moments to send me, upon reflection, into fits of giggles. (lets just say this time it involved a visit to a local recreational pot shop and leave it at that)  My solo adventures are much more tame, and even when I was healthy, rarely did I venture into the unknown and unusual without a well thought out plan that I stuck to like crazy glue.  Thankfully, My sister has enough strength and courage for the both of us and is always prepared to be unprepared.  Until now, I hadn't realized how important  it is to have someone in your life who can loan you these qualities, when yours are depleted or nonexistent.

Upon returning home, we were thrown into the unfolding drama that was to be the final days of life for my step-father, Byron.  After a long and fulfilling 89 year existence, Byron was transitioning from this world to the next.  The doctor said that he had a week to live, and true to his nature, he died exactly 7 days later-right on schedule.  During those final days, Although Byron was not conscious, I would go and sit with him after work and hold his hand.  At first his grip was strong, but it became weaker and weaker.  I sat with him on the final evening before he died.  He was resting peacefully and barely acknowledged my touch.  I wondered if he was still with us on earth, or had his soul already moved on, shedding his well worn body.

I remember desperately wanting to know the unknowable answer to this question.  In part, because I once woke up from an extraordinary dream.  I rarely remember dreams, but  I remember feeling like I was out of my body and I didn't want to go back in.  I felt light, happy and full of energy, but as I eased my spirit into my wet, heavy, cold and clammy meat suit, it felt like a straight jacket in which I could barely move or breath.  The sensation was so powerful that it was seared on my brain.  I also remember that it was a few days after this vivid dream, that I emailed the doctor asking for a chest x-ray, knowing in the back of my mind that my life was about to change.  It was the first time that I faced my fear of cancer. 

After unburdening all of the heaviness of the last few weeks onto this blog page, I am now ready to crack open that rom-com!  Here is a bit of the Oregon coastline.

Living with Lung Cancer...or..Living with Thymus Cancer...It's All Very Stressful

The good - I am still alive, breathing and savoring life to the best of my ability.
The bad - I had a scare recently - the cancer my be fighting back against the treatment
The crazy - Dr. C now says that I have thymus cancer instead of lung cancer - why you ask - because I'm not dead yet maybe??? (my words not his).

I am still processing all of this info.  Not really sure why the change in diagnosis, but the long-term prognosis is better for thymus cancer than lung cancer.  Thymus cancer can cause lung carcinoid tumors that mimic lung cancer.  I do fit the profile for lung carcinoid tumors from thymus cancer: lower median age at diagnosis and chest pain as a warning sign (I had this 3 years ago and had a bunch of heart stress tests at the time) and of course a persistent cough and trouble breathing.

I was recently reading a new blog about cancer and found another kindred spirit, who, when describing the psychological side effect that comes with a cancer diagnosis, called it a "heaviness of life". 

Another great blog to follow is written by my cancer guru, Kris Carr.  Here is a link to her top11 tips for cancer patients:  http://kriscarr.com/blog/11-tips-for-cancer-patients/?utm_source=newsletter&utm_medium=email&utm_campaign=blog-100416


Here is a photo of Abby to lighten up the day:

The Fear Driven Cancer Consumer

The first time I was made aware of the relationship between fear and consumerism was when I watched the documentary, "Bowling for Columbine", during a conversation between of all people shock rocker, Marilyn Manson and film maker, Michael Moore.  It was pointed out how fear is used in advertising to get consumers to buy stuff.  Since I hadn't studied Marketing, had taken only one college Psych class, and frankly, was not very observant, this was a concept that was new to me.

Suddenly, I saw the 'fear card' being played out everywhere, especially in commercials like telling seniors they need an expensive walk-in tub or else they will slip and fall, or telling children they won't have friends or be popular unless they possess a certain toy.  Some products are based completely on fear such as  items to prevent wrinkles, hair loss, bad breath, etc...And the fear mongering goes into high gear during election season, with candidates opting to talk in fear instead of policy.  In the years since the documentary came out, I have found it fascinating and somewhat disturbing just how well it works!

Now throw in a terrifying cancer diagnosis and see what happens.  You would think I would know better but alas, I am here to confess a long list of 'fear' purchases over the past year, starting with books on everything from what foods to eat to fight cancer to the power of positive thinking, progressing to expensive supplements and essential oils, and finally on to new age finds of crystals and Himalayan salt lamps. Some of these purchases are and have been very helpful and some are, to my shame, collecting dust and taking up valuable closet space - anyone need a pricey but slightly noisy air purifier?

Now my point - I am confessing for a reason.  The old self critical me would call myself a naïve RUBE.  A by-product of my old self-critical cancer personality.  But the new me is having fun with all of discovering, researching, and online shopping.  Maybe it works and maybe it doesn't, as long as my spending stays within reason, I will continue to try new things that  promote wellness.

And here is something that promotes wellness, walking on the path to McWay Falls in Big Sur:

The good, the bad and the absolutely crazy -a reflection after one year of living with lung cancer

One year after being diagnosed with lung cancer, I feel like now is a good time for reflection.

First the good - all is well with me.  I am still working, exercising and living my life.  I continue to receive bi-weekly Nivolumab IV treatments and regular scans.  Although the tumors are still there, the cancer masses in my lungs have shrunk a great deal, and I feel as if medically things are stable. 

The bad - I lost my first cancer friend recently.  This journey has allowed me to meet many new people, while getting chemo treatment or attending Cancer Support Community classes.  One of those people was a woman named Kathy, who was being treated for breast cancer.  We met last July in the chemo room.  It was actually Mom who spoke with her at first, while she was there for treatment with her daughters.  Turns out we both live in the same town (chemo takes place in a different county 25 miles away from where we live, so there are people from dozens of communities receiving treatment).  Kathy was also one of the closest cancer patients in age to me - she was just a year older. (most of the chemo patients are in their 60's and 70's)  Since that first meeting, I have run into her and her family members at the local Kaiser clinic, at chemo a few times and at a Cancer Support Community class.  It was Mom who noticed her obituary in the local newspaper last week.  The obituary mentioned that Kathy was set to start a new immunotherapy drug trial for breast cancer next month in San Francisco. 

The crazy - the biggest challenge for me this year - LEARNING HOW TO LIVE WITH THE UNCERTAINTY OF CANCER!  One of the first things I looked for after starting treatment was first hand experiences with lung cancer, with nivolumab, with surviving lung cancer... any kind of evidence of HOPE.  One blog I follow (here is a link:  http://lunaoblog.blogspot.com/) is written by a woman named Luna (same name as my car - its fate!)    Although Luna has a different type of lung cancer and a different treatment regiment, she recently wrote about a feeling that I can relate to - uncertainty.  She talks about how being unsure, uncertain and hesitant about what lies ahead "chips away at her self confidence"  and how she is trying to overcome this feeling of tentativeness.  It is so very comforting to know that I am not alone in this mental struggle! 

Last month I was able to check off a bucket list item - to see the Grand Canyon.  Here is a photo I took recently on that visit.

Cancer's 'Third Rail' issue - Right-to-Die laws

Today I learned of the death of Christy O'Donnell, a 47 year old woman who was diagnosed with stage 4 lung cancer in June of 2014.  Christy played a key role in the passage of California's Right-to-Die legislation that was signed into law by Governor Brown last October.  Unfortunately for Christy, she was unable to take advantage of new law, because it won't be in effect until later this year.  In her final months, Christy was made comfortable through hospice care, although her family reported that she did suffer seizures and breakthrough pain during her final weeks - suffering that could have been avoided if Christy was allowed to end her life on her terms.

I began following the death with dignity debate in the California State Legislature soon after diagnosis, sending emails to my reps and watching committee hearing testimony.  Even as I was starting treatment to extend my life, in this way I was also focused on my death.  About this time, I also started to read Bernie Siegel's book "Love, Medicine & Miracles" where he talks about the fact that 20% of cancer patients just want to die.  They don't allow themselves any hope, and they don't have faith in treatment.  I had to ask myself, by focusing on securing a right to die on my own terms, was I one of Dr. Siegel's 20%? 

When the legislation stalled, I was angry that I was being denied the choice. I respect people's right to have their own religious beliefs, but I also don't want to have those beliefs imposed on me. I explored moving to Oregon, where death with dignity was legal.  A move just seemed so stressful and drastic at a time when I most need to focus on my health, not adding stress to the situation.  Dr. Siegel says that to survive, you have to want to live to be 100.  Frankly, hoping for a good 10 more years seemed miraculous enough when you are up against lung cancer statistics.  So am I being realistic or fatalistic?  How does someone maintain a strong sense of hope and resolve in the face of a terminal diagnosis?  I don't have the answers, I can only maintain a positive attitude and not take each day that I feel well for granted.

When he signed the controversial legislation into law, Governor Brown wrote a letter to the California State Assembly explaining his decision.  The last few lines of his letter state "I was left to reflect on what I would want in the face of my own death.  I do not know what I would do if I were dying in prolonged and excruciating pain.  I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill.  And I wouldn't deny that right to others."   In the end, the Governor's words are exactly how I feel.

In the spirit of not taking time for granted, here is a little video I put together with random moments from January:

2016 - A Year of Unknowns

The Huffington Post had an article about the major changes that have taken place in 2015 in regard to lung cancer detection and treatment.  Here is the link:  2015 - turning the tide against lung cancer .  I would encourage everyone with a history of smoking to have the CT screening test the article talks about.  The test only takes a few minutes, and it's much easier to treat this disease if it is caught at an earlier stage.

While the article is full of hope and promise, it also cites the very sobering statistic that less than half of all women diagnosed with lung cancer will be alive one year after diagnosis.  Since I am coming up on month 8 and still feeling well enough to work and exercise, I am very grateful that immune therapy is working, but the question remains - for how long?  And the answer - no one knows!

I had a second PET scan in December that showed great reductions in the cancer in and around my lungs, however there is still some and in numerous areas.  Too many for Dr. C to recommend any radiation or surgery options.  The scan reflects how I have been feeling lately - healthier than last spring and summer, but far from normal.  For now, I continue with my routine of bi-weekly treatment, and I have registered for some upcoming classes - drumming for wellness, restorative yoga and urban Zen.  In 2016, I am officially coming out of the  'New Age' closet!