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!

Pot Class and 'Being Mortal'

One of the Cancer Support Network class offerings is a 'Cancer and Cannabis' seminar.  Since I live in a medical marijuana state and am curious to know what all the fuss is about, I went - and brought a friend!  First, I was struck by just how normal everyone looked in this class, including the instructor. (I really should work on my pre-judgment issues :-)  The first half of the class was like learning a new language:  THC, CBD, FECO, cannabinoids, terpenes, tincture, vaping,  and on and on.  Then the discussion turned to how to use medicinal marijuana.  Small quantities (2 to 10 mg) are used for pain relief and sleeping, and stronger dosages claim to actually shrink tumors and keep cancer from metastasizing.  The key is in the production of the cannabis product and dosing.  Production is an issue because lack of regulation means that some products are actually being produced with carcinogenic products, and without a clear understanding of dosage, someone who has very little experience like yours truly can have some very bad psycho side effects.  Basically, if I choose to use in the future, I will seek out the guidance of a qualified pot professional first.

It is currently midnight as I am writing this blog post - the eve of a follow-up PET scan, and I can't sleep.  I really have no reason to fear the test and results.  My blood work numbers were good today, and I will have immune therapy treatment #14 a couple hours after the scan.  I am finding that the most difficult part of having cancer is not physical, but rather psychological and emotional.  Earlier this evening I watched a PBS Frontline episode title 'Being Mortal'.  It was based on Atul Gawande's book of the same title, which I had read a couple of months after I received my diagnosis.  It was a tough read.  The topic of the book is facing end of life issues.  The subject is a definite downer, but I recommend both the book and the Frontline episode to any with cancer and their loved ones.  I very much hope and continue to actively work toward a long and healthy life, but I also feel very strongly that it is important to be prepared to have a good death, so I really appreciate the candid honesty of the doctors and patients in both the book and the documentary.  While watching the Frontline episode, I was struck by the meaning of the title 'Being Mortal' - not only does it apply to the cancer patients featured, but it very much applies to the oncology doctors.  They are mortal, not gods.  Medicine can go only so far, and it really is up to us to be prepared to make sacred decisions about the meaning of a good death for ourselves.  Have the difficult discussions with loved ones and make sure they know your wishes, so that you are spared suffering and your loved ones won't have to agonize over whether they are making the right choices on your behalf.

Since I am currently yawning - I am off to cuddle up with my canine care team.  Here is another CA sunset - Enjoy!



Cancer Boot Camp

Within two days of being diagnosed with cancer, I received a "Cancer Support Community" newsletter in the mail.  Being more of a loner than a joiner, I let it sit on the counter for a while.  When I finally took a look at it, I was surprised to see so many interesting offerings available free of charge.  The newsletter had all of the cancer networking groups you would expect, there are general support groups, groups by types of cancer, and even a singles with cancer group.  (the compassionate side of me thinks that group sounds kinda cool and the judgmental side thinks it's kinda sad -ok, I probably shouldn't judge without trying it out)  Anyway, there are a bunch of classes you would expect like nutrition, art, yoga, and tai chi, and a few to tempt a 'new age' enthusiast like myself such as African Drumming and Reiki Circle.  Unfortunately, most of the classes take place at the during working hours or just after, and the location for the classes is 25 commuter-clogged miles away. 

It took me 6 months, but I finally attended my first class at the Cancer Support Community Center - Cancer Boot Camp.  (given on a driving friendly Saturday morning)  Cancer Boot Camp was conducted by a Naturopathic Doctor that believes most cancers are fueled by inflammation in the body, and cancer can be prevented or battled if you already have it, by reducing our exposure to it.  To counter inflammation, we need to eat an anti-inflammatory diet (LOTS of fruits and veggies, preferably organic) exercise a minimum of 3 hours per week, and stay hydrated by drinking half your body weight in ounces of purified water.



My daily green smoothie!

Cancer Boot Camp stressed the importance of treating food  as medicine, which translates into 5 to 7 servings of vegetables and 4 servings of fruit per day - basically twice as many as were recommended in the past.  To help increase veggie intake, they are okay with using some green drink powders that can be mixed with water or juice, or added to  a green smoothie.  There are also some supplements that are recommended including Omega 3 fish oil and Curcumin / Turmeric. 

Now for the bad news.  Naturally, they don't like sugar or carbohydrates.  The doctor didn't ban them, but only want you to have 2 servings, which is basically 2 slices of bread, per day.  For me, the saddest news of all was that they are very anti-dairy.  This was devastating to a Wisconsin born cheese-head such as yours truly, and so I have yet to break up my love affair with Cheddar and Monterey Jack.  Since the very first thing the doctor giving the presentation said was to follow the recommendations 80% of the time, not 100%, I figure I can still have a grilled cheese sandwich 2 days out of ten, because I simply can not survive on green smoothies alone!

Immune Therapy Update - I am still sailing along with immune therapy treatment.  Recently, I had my 13th infusion, which is the 3rd one since having to miss a treatment.  Overall, I feel pretty well and have increased my working hours from 1/2 time to 3/4 time.  The only annoying side effect for me is the sticky 'allergy' eyes, that is especially bad in the mornings.  I still take a daily allergy pill, and I use over-the-counter eye drops recommended by my eye doctor, which help somewhat, but I will continue to seek out a more effective solution.

6 Months Diagnosis Anniversary and the Self-Pity Party

my new t-shirt!

First, an update - I have had 2 more Nivolumab infusions since I had to skip a treatment due to a stressed liver.  I was worried about my liver last week ahead of the most recent blood test.  When I was in for acupuncture I mentioned it.  I was told to drink water with lemon in the morning to counter a 'hot' liver.   Since I have a lemon tree, this was an easy fix - and so far it seems to be working.

November 7th is the 6 month diagnosis anniversary.  I am over the shock, over the fear, but concerned about 'self-pity brain' settling in.  Recently, a former coworker died.  The news was sudden and everyone at work was shocked and saddened, except me.  My first thought was 'lucky bastard' -followed by  'he smoked way longer than me, he drank way more than me, exercised way less than me, and yet he died at home, not from a long drawn-out illness, but from a heart attack at age 69.  Life is not fair!'  What is wrong with me - why can't I just be sad for his family -why do I have to compare and judge his life to mine?  Is it just human nature or am I letting cancer put me in a prison of self absorption, and allowing it to distort my world view.

Helen Keller is quoted as saying "self-pity is our worst enemy and if we yield to it, we can never do anything wise in this world."  Self-pity is definitely addictive.  Not only do I use it occasionally as an  excuse to skip the gym or have that second bowl of ice cream, but I find that I also use it to avoid making decisions about the future.   If left unchecked, self-pity is not only an obstacle to living life fully, but can also be destructive to me mentally and physically.  All of this is true, but sometimes I just can't help myself when the darkness creeps in.

Debbie Macomber states "it's all right to sit on your pity pot every now and again, just be sure to flush when you are finished."  Maybe I am still adjusting to my new normal, or maybe it's human nature and I will have moments of self-pity as long as I can stop it before it takes up permanent residence in my gray matter. 

I want to end this blog post on a positive and grateful note, so I would like to say that I am so grateful to all of the lung cancer patients who came before me and participated in the immune therapy drug trials.  I know that I would be in far worse shape today, if it weren't for you - Thank You!   I guess I'm pretty lucky after all!

Information Overload - Is there such a thing as too much information?



Luna

 

"Knowledge is Power" that's my motto.  I research, read reviews, and gather reliable recommendations before making a decision on major services and purchases.  (Okay, the little Fiat 500 electric car lease was bit of an impulse thing, but it was a good deal and 'Luna' is really fun to drive!)

In Dr. Bernie Siegel's book "Love, Medicine & Miracles" the author says that patients must take responsibility and participate in all medical choices, and mobilize their will to live even while in the shock of diagnosis.  I will admit, I did not do this.  At first, I tried looking for information on the web, but ended up finding a whole lot of depressing statistics about the NSCLC squamous cell cancer (my diagnosis).  Frankly, it all just scared the crap out of me!

At my first Oncology appointment, Dr. C told me to stop looking on the internet, I did and my anxiety levels dropped immediately.  He told me I would be taking Nivolumab, and I didn't question it, I was actually relieved.  I had just watched the Ken Burns documentary 'Cancer:  the Emperor of All Maladies' and knew that immune therapy was the latest promising area of cancer research.  The only thought that I could give to the treatment was 'either it's going to work or it isn't'. 

Dr. Siegel also says that  "the body can utilize any form of energy for healing, as long as the patient believes in it, so pick a therapy you believe in and proceed with a positive attitude."  Although I was passive by Bernie's standards, I did believe in the treatment and approached it with as much of a positive attitude as I could muster.

A couple of months into the treatment I met another member of my healing team, a Nurse Practitioner, who took time to review all of the detail involved in the testing, diagnosis and treatment of my cancer.  One thing NP gave me was a print out of the CT, PET and MRI scan results.  I remember skimming the reports and noting down that I had numerous masses, the largest being roughly 11x8 centimeters - and made a mental note to see what that equated to in inches.  I ended up setting these reports aside.

Last week I had a new spiral CT scan.  Since Dr. C believed the masses were shrinking, I wanted to look up how large they were to start with, so when the new CT report came out, I could compare.  When I pulled out the first report and read it, I just about lost it.  The large mass was massive (grapefruit size) there were several small ones and an area with so many cancer spots, they were "too numerous to count" - and if that's not enough, there were suspicious spots on my liver and spine.   To top it off, when I read all of this, I was fighting a fever and sore throat, so I couldn't even tell myself that I feel good today.  I did receive a reassuring email, with a smiley face and all, from Dr. C after he reviewed the new CT scan report, but I continued to worry about my liver, my spine, etc....  I tried to stop - after all "worrying is just wishing for what you don't want", but fear is a tough nemesis. 

In preparation for my next treatment, I had the obligatory blood test, and for the first time, my liver numbers (ALT, AST and LDH) had all spiked.  My liver was stressed and I wouldn't be getting the Nivolumab treatment (#11) this week.  This is a side effect of the immune therapy treatment, and I'm hoping that it's just temporary.  I have a treatment appointment in 2 weeks, as long as the test numbers come down. 

I did meet with Dr. C and confirmed that the grapefruit was now about 25% of it's original size, some of the smaller masses were no longer visible, and the spots on the liver and spine haven't changed and may not be cancerous.  I have decided to release all of the fear and treat this as a chemo vacation.  I do still believe in the power of knowledge, and Dr. Siegel does have a great deal to offer in taking control of my health.  That said, I have to do it my way - trusting and believing in my instincts, my power, and my spirit, and all will be well in the end.  In the meantime, I will be having some fun driving around in Luna!



Luna and friend, Verde, meet up at the charging station