the insidious nature of fear...

Yes, I sound like a broken record, but I have to go there again - by 'there' I mean FEAR.  I knew going into retirement that it would be very important to keep my mind occupied, so that I didn't have extra time to over analyze every new ache, pain or shortness of breath.

For the first few weeks of retirement, I was busy. It wasn't all fun - I had multiple dental and optometry appointments and deferred maintenance projects around the house and yard.  But fear is sneaky. It is constantly looking for access to my brain.  Following a fun trip to the San Juan Islands in the fall, a shocking number of tragedies occurred: hurricanes reaking havic in Texas and Florida, mass shooting in Vegas, fires in wine country 60 miles north of my town in the East Bay, fire and then mudslides near Santa Barbara, and with each tragedy, I was glued to the tv and internet, letting all of it was soak my brain in constant terror and anxiety bath about what would happen next.

So it is no surprise that by Early 2018, it became clear that the Opdivo was no longer working and I was faced with conventional chemo.  In the 2 weeks, prior to my first round, my brain was completely awash in terror.

in the face of adversity, there is nothing wrong with a little hope.....

It was just over 2 years ago that I was diagnosed with lung cancer.  Based on statistics, I shouldn't be alive.  I should be much sicker, but thanks to immunotherapy, I have been able to live, work and be fairly normal in my existence.  In fact, people are continually telling me how good I look, to the point that it kinda drives me crazy.  But, I will admit that I would rather look and more importantly feel as good as I can because it continues to give me hope.

I have arrived at retirement.  Friday, June 30 was my last day of work in local government.  Thank god I am able to retire at age 55 with medical benefits and a good pension.  Yet another reason to stay positive.  During these last 2 years, it was the job and the people that I worked with that were a great source of strength, humor, and general support.  Going to work was the one constant in a swirl of medical craziness, and for that I will be forever grateful.  I was very apprehensive and stressed out during the final few weeks, as my post working future seemed to be a big gray void.  That final day was so special and emotional, but I realized something on that last drive home, I am ready to begin my next chapter!  In fact, I have to admit that I haven't stopped smiling for the past 2 days.  RETIREMENT IS AWESOME - BRING IT ON!!!

Dealing with Difficult Days - the Yervoy and Opdivo experience

The good - I have finished my 2 remaining Yervoy treatments. 
The bad - Yervoy has some serious side effects like nausea, diarrhea and extreme fatigue.  Side effects that have lasted a few weeks now, and I'm finding that staying mentally positive and joyful is difficult when I'm feeling crappy and tired. 
The crazy - I filed paperwork and will be officially retiring in 2 months!  (more on this in a future post)

Four weeks after the last Yervoy / Opdivo infusion and I am still trying to get the side effects under control.  The fatigue has reduced the frequency and intensity of  extra activities like working out at the gym and walking the dogs, and the nausea and diarrhea are annoying as hell.  It got to the point that I didn't want to leave the house (aka the safety of a private bathroom) to go to the movies, shopping or out to dinner.  A little tip - the doggie pick-up bags from the park make good barf bags in a pinch!

I tried over the counter medicine for nausea, but it made the diarrhea worse.  I tried medicine for the diarrhea and  it made the nausea worse.  So I turned to my Oncologist.  After trying Zofran and another anti-nausea drug that Dr. C prescribed, I still had no relief, so I had to go back on steroids for a week.  After 24 hours the nausea subsided, and after 4 days the diarrhea finally let up.  Unfortunately, the steroids raised my blood pressure and I had to wind down the Prednisone sooner than planned.  Of course the nausea and diarrhea showed up again. 

So I scoured the internet and finally found the idea to try probiotics from a previous Yervoy/Opdivo patient blog post.  After a few days of eating yogurt and taking a supplement, the symptoms have subsided, so hopefully, I've turned the corner for the better on the intestinal distress. In addition, I found another patient account that described their gastro intestinal issues as subsiding after a couple of months, so hopefully I won't be tied to the bathroom any longer.

After an additional week delay, I am back to the original every two weeks for an hour Opdivo schedule.  Hallelujah!

So how do I deal with difficult days?  BADLY  I have tried breathing exercises, meditation, getting on with life while trying to ignore it all, talking about it, not talking about it, basically driving myself and those around me crazy!  I mostly just want to imitate George Carlin and go on an epic swearing rant.

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:

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



What Could Possibly Be Good About Having Lung Cancer?

So I struggled long and hard about what to name this blog.  Words are important!  'Living with'  yes, I will be living with this disease until I am no longer living.  It will be with me, even in the event of a decades-long remission.  Having cancer changes your psyche.  'The bad'  pretty obvious, and 'the crazy' well truth is always stranger than fiction, and sometimes you just can't make this stuff up - like the way x-ray technicians always say "Are you seeing your doctor SOON?" after my lung pics pop up on their computer screen, or when the PET scan guy got mad when I told him that I was at the gym the night before the test.  (Who knew that the sugary cocktail you have to drink for the test won't work correctly if your muscles are in post workout repair mode)  Luckily, I hadn't worked out that hard and I didn't have to repeat the scan. 

Returning to topic, what could possibly be good about having lung cancer?   Okay, yes I did confirm that I now qualify to check the medical exception box excusing me from jury duty, but that is not what I mean by the 'good'.  In my first post, I wrote that the good was having an immune therapy treatment, rather than a traditional chemo therapy treatment.  While it is true that after 10 treatments I feel pretty well, and I am very grateful not to be sick and bald, this doesn't quite completely cover my meaning of 'good' either.

So let me elaborate - Having this disease has put me in a position to meet some exceptional humans - first and foremost, the chemo therapy staff, and most notably, the chemo nurses.  Everyone in the chemotherapy department where I receive treatment is professional, compassionate, and positive.  There is a very deliberate calm and efficient energy in their space.  I remember being particularly anxious and emotional the first few infusions and having the nurses talk me through the treatment, side effects and any other concerns.  Chemo staff and volunteers are always on hand to answer questions, schedule appointments, and provide a warm blanket or beverage for myself and my mom, who accompanies me and has been my rock through this crazy cancer journey.  

I would also say that in the chemo room I bear witness to the bravery of many individuals who have had a much more difficult cancer journey than myself.  Mother Teresa said "we shall never know all the good that a simple smile can do", but I can tell you that there is nothing like the power of a smile or the occasional laughter when I am in the chemo room.

speaking of smiles, more pics of my canine healing team: 

The Elephant in the Lung Cancer Room

The evening news yesterday announced a new philanthropic campaign being launched by a rich high-tech CEO to help reduce mortality in Breast Cancer patients.  While my old self thinks that's great, my new self says what about all of the other cancers out there, why limit your sights to just one?  Or at least pick the one that actually kills more women each year than breast, ovarian and cervical cancers combined- LUNG cancer?  Why....because of all of the cancers out there, Lung Cancer, or rather the people who are living with it, are the most prejudged.

The truth is the high-tech CEO and his company minions can spend their donation dollars anyway they please, and companies won't be lining up anytime soon to help cancer research with what is judged to be a self-inflicted-through-smoking cancer.  It doesn't matter that there are people with lung cancer that have never smoked, or like me, who hadn't smoked in over thirteen years when diagnosed.

Since I am constantly asked about my smoking history when people learn that I have this disease, here it is:  March 31, 2002 - that is the last time that I lit up a cigarette - I was 39 years old, with my 40th birthday coming up in a couple of months.  I had smoked a pack a day on and off since about age 20.  I had quit a number of times, sometimes even for weeks and months, but work or relationship stress would send me back to the highly addictive habit.  In the spring of 2002, I wanted to quit as a 40th birthday gift to myself, so I did.  It was rough for a few weeks, but this time it stuck.  I learned from my previous quitting attempts not to let my guard down - thinking that I could have an occasional puff without getting hooked again, and I was especially vigilant when work and relationship stresses inevitably came my way.  The key to quitting smoking I found is REALLY-REALLY-REALLY wanting it!  After a few years, I basically forgot that I had ever smoked.  Fast forward 13 years, 1 month and 7 days to my lung cancer diagnosis day, May 7, 2015. 

Interestingly enough, Dr. C. doesn't believe that smoking was the cause, or at least not the only cause.  Researchers are looking more and more at environmental factors.  I read an article today that said the world will have double the cancer rates attributed to air pollution over the next 2 decades if we continue our current polluting ways.  Many of the books that I have been reading lately look to emotional and psychological factors, identifying 'cancer personalities' - personality traits that contribute to illness and disease.  I am finding this area interesting and will be blogging on it in the future.  Other areas of study include diet and chronic stress as contributing factors to the development of cancers.

Strangely enough, I smoked for less years than over a dozen smokers and ex smokers I know, and am the only one with a lung cancer diagnosis - so smoking alone is clearly not the only factor in contracting this disease.

To combat this illness, I have developed a holistic approach in my wellness routine.  In addition to the Nivolumab,  I have improved my intake of fruits and veggies, continued  a routine of regular physical activity, and added stress reducing exercises, such as yoga, meditation, and visualization.  I also get regular massages and acupuncture treatments. 

I can't change the past, and I can't change the fact that some people are going to judge me based on my type of cancer, all I can do is live, love, and be as healthy as I can today!

(Elephant photos taken at PAWS in San Andreas, CA
 - a place where I like to spend my donation dollars)

"Some Things are Too Strange to be Coincidence"

 

So it was check-in-with-the-doctor time at my house this week.  I'm four months in to my cancer journey and I was cautiously optimistic.  I feel pretty good most of the time and have had very few side effects from the immune therapy treatment.  I have energy enough to work part time, keep the house up, practice yoga, walk the dogs, and even go to the gym - but I wanted to hear good news from the person who kinda has my life in his hands - Dr. C.  (As anyone living with cancer knows, the most important decision a person with cancer can make is the choice of the doctors on their healing team, particularly the Oncologist.  If you don't feel a connection with your first choice, please move on until you get the right doctor!)

Dr. C. looks like he belongs on a surf board in Santa Cruz rather than in an Oncology Department.  Strange choice for me as I usually go for women doctors, but by a crazy coincidence, I had met him two years earlier when a biopsy I had produced an amyloidosis  result and earned me a trip to Oncology.  Although I didn't have amyloidosis, little did I realize how important that appointment would be.  Unlike most doctors, Dr. C. didn't intimidated me into silence or one word answers, so when I was offered a choice I picked him.  At the very first appointment, when I was still numb, in shock and struggling not to break down into an epic crying jag, Dr. C simply walked in and proposed immune therapy.  Right then, my energy shifted ever so slightly as a glimmer of hope appeared - I was now cautiously optimistic. 

9/9/15 -Fast forward 4 months and 8 Nivolumab treatments.  Dr. C examined the numerous periodic blood tests and x-rays, and after we exchanged questions and answers, he put his hand up.  It took me a second to comprehend and to respond in kind - we high-fived!  That said, he ordered a new CT scan to get a better look at my insides, but any appointment with a high-five is a win for my cautiously optimistic spirit!  I then had Opdivo treatment #9 with no side effects.

Here are my two canine members of the healing team, Abby and Angus: