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)