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:

"In the Face of Uncertainty, There is Nothing Wrong with Hope"

First, the bad....In early May of this year, I heard the words - you have CANCER.  This was followed by more scary words like inoperable - extensive lymph node involvement - treatment to extend life - chemotherapy.  I'm listening to all this and thinking HOLY CRAP! BUT I FEEL GOOD TODAY! MY BRAIN IS GOING TO EXPLODE!  WHAT THE F#*CK!!!   There was silence as I tried to think of something to say to the doctor on the other end of the telephone.  The old sleeping through life me was ready to say "Thank you for calling"  but I was a now fully awake - as I recall, I said something like "WOW, I wasn't expecting that" and quickly got off the phone so I could find someplace to hide and to process the shock and terror of my diagnosis.  I stayed that way pretty much for the next couple of months.

Now the good....I am being treated with an immune therapy regiment as a first line treatment- a drug called Nivolumab (Opdivo is the Bristol-Myers Squibb name) that had just been approved by the FDA in March.  I have had 8 rounds of  this new type of chemotherapy over the last 16 weeks, and so far so good!  The drug works by boosting my own immune system to keep the cancer contained, basically to my left lung and a couple of adjacent lymph nodes. 

When I went on line for information about this treatment, there was statistical stuff about the drug trials, and a couple of first person accounts on the drug maker's website, but little else.  Since I have recently emerged from diagnosis shell-shock, I decided to start writing about my experience with Nivolumab and LIVING with lung cancer.

Now for the crazy....my first piece of advice if you are new to Nivolumab, start taking a daily dose of Loratadine (Claritin) otherwise you are in for a wickedly itchy rash after a couple of treatments.  If you already have the rash, start taking it now and things should clear up in about 10 days.   I speak from experience!  (I scratch just thinking about it :-)  Love to all, and enjoy tonight's sunset!

(photo taken in Half Moon Bay, California)