Is it ethical for drug companies to make sooooooo much money from people with cancer?

I have been fortunate to be treated with Opdivo for a year and a half, even though I haven't had any treatment in over 2 months.  Yes, I hope to return to get my Yervoy/Opdivo combo treatment this week, as long as my liver enzymes cooperate.  And yes, I do hope to continue with immune and target therapies for as long as I can.  All that said, something has been really bugging me for a while now, especially when just about every article about cancer research is focusing on immune therapy drugs as if they are miracle drugs - what is bugging me is the fact that these therapies are continuous and NOT A CURE . 

Just today, I read another article that said that former President Jimmy Carter was cured.  He isn't cured, and just like the rest of us, he has to continue to get regular Keytruda treatments every couple of weeks.  There is NO end to paying out for these very expensive drugs.  In other words, the for-profit drug companies are making a SHIT LOAD of money at the expense of those of us with advanced cancer. 

Let's put it another way:  while I am grateful to be alive and have a decent quality of life, The for-profit drug companies have NO incentive to cure me or my fellow cancer patients.  These companies instead are VERY HAPPY to have an extremely expensive drug that we literally have to purchase from them every two weeks or we DIE. 

Here is the thing, the Republican controlled government is in the process of repealing the Affordable Care Act (ACA).   ACA removed the spending cap per person that insurance companies used to place on how much they will cover.  I have recently read that the spending cap may be reintroduced in the Republican's health care replacement.  If that happens, it won't take long for those of us who rely on these ridiculously expensive treatments to reach their spending limits, and since these drugs cost thousands each month, unless we are rich, we will all just DIE. 

Bottom line, my life may be in the hands of the idiots currently in charge of the gov't - unless the greedy drug companies lobby to not have a cap in the ACA replacement, so they can continue to exploit their captive cancer clients.

Either way,  NOT a comforting thought. 

Doing It My Way

2017 New Years Resolution - experience joy every day!  So I am taking a break from self-help books, I plan to enjoy food, enjoy movies, enjoy friends and family, and feel as well as I can, despite not having any treatment since the end of December.  I spent 2016 lazar focused on learning and making rigorous life style changes to support healing, so now it's time to give myself a bit  more balance.  In essence, I am a grad student on an extended spring break - okay, but with green drinks not alcohol  :-(

Update - so I have had 2 of the 4 Yervoy treatments before my liver enzymes started registering too high for chemo.  Currently, I am enjoying a few weeks on prednisone, which so far has been awesome!  Gym workouts are amazing, and I have had plenty of energy for long walks with the dogs, extra yard and housework that's been neglected, and an overall feeling of clear headedness and clear breathing.   I'll admit that I am worried about the changes taking place in my body, but I am choosing to focus on how I feel today, not what the future holds for me tomorrow.

One of the self-help items that I studied and even took a class at the library on last year was meditation.  Based on my research, I tried to set a daily time  and place for meditation, following some of the formal instructions and practices that I learned.  However, what I have found is that for me, it works better if  these introspection sessions are more organic and spontaneous, such as closing my eyes while sitting in a waiting room,  or maybe while I am laying in bed, after I've awoken, or am on a quiet walk in nature.  I'm finding the length of time doesn't matter, some times it's 2 minutes, other times it may be 20.  On this cancer journey I am finding out that if I get quiet, breathe, and take my mind below the surface crazy and noise, that I can hear and follow my own inner voice much easier.  And, by doing it my way, I actually look forward to meditation.

When I was growing up and learning to swim, once I mastered diving deep and staying under water, I could look up at all of the kids legs and arms splashing and causing waves.  Surface noise was muffled or non-existent, and I could just hang out for a few seconds in peace.  So while a formal meditation practice continues to be a challenge for me, if I make it more spontaneous and flexible by visualizing my young swimmer self, I can quiet my mind more easily and better focus on making decisions and plotting a path forward.  This will be crucial for my health, given the current political climate and fears over what the future may hold.

So 2017 will be the year that I integrate the self-help information that I have learned to enrich and enjoy life, not just live a Spartan restrictive existence to extend it.

Interestingly enough, I find that when I make a course correction, such as I am doing now shifting from an intense learning focus to an implementation focus, the directions and the guides seem to show up for me.  Here is a great example of this.  It's a pbs news story on immunotherapy:

https://www.pbs.org/newshour/amp/bb/cancer-immunotherapy-life-saving-powers-limits

New Year - New Hope

I refuse to let cancer, politics, news, and fear of the unknown rule my life in 2017!  I know - easier said than done. 

November 8th, 2016, the day I would like to erase from my brain, the day a scan showed my cancer growing again, and instead of the first well-qualified female president of the US being elected, we have another big-egoed conservative dude, with NO government qualifications, trying to trample on the first amendment, women's rights, healthcare, and the environment, about to take over the country. 

To say that 2017 will be challenging for me is an understatement, however I also believe that everything happens for a reason.   I have spent the end of 2016 angry, sad, and scared.  The one thing I know for sure is that if I let these emotions continue into 2017, I probably won't see 2018.

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: