Two Years Ago Today- On My Cancer Journey -March 25, 2013

Snowed Under with a Cold- What the Hell!!! 

Am I unlucky? Believe me I am not one to think I would get through chemo easy. When I read a post on one of the cancer sites where a cancer fighter said she experienced chemo as if it were a ‘slight hangover’ I just knew she was lying! And, then of course after my first chemo treatment I found out for myself after the urinary tract infection, root canal, and varied other not so sweet ailments that chemo was not like a ‘slight hangover’ or any kind of hangover, for heaven’s sake! What was she thinking??? Anyway, this time around after the initial first three days after chemo when I dropped off the steroid high and crashed – I began to get a little cold. At first, it was just that- a little cold or should I say a ‘slight cold’. ;-) Soon, I was coughing, hacking, wheezing, and blowing my nose at enormous rates of speed. I was filling up baskets of Kleenex and waking up in the middle of the night having to blow, blow, and then blow my nose. It was and has been horrible. I finally went to see my primary care doctor here in Fort Wayne, who pronounced that I had a bronchial infection. Wow! He also said I was weird, but I didn’t see this as a professional diagnosis and went on my merry way with a fistful of antibiotics in my hands and the remembered horrified looks of the receptionist and nurse when I mentioned how much my medical bills were for chemo. LOL! A true Kodak moment (if those still exist in this digital age). This morning I woke up about 4am and wasn’t coughing. I got up to see if the weatherman had been right- and yep- there is a ton of snow outside. Betty, my dog, is soooo happy. She loves the snow. << Yeah, I used to love the snow too, when I was eight and got out of school for a snow day. Now, I like it if I don’t have to leave the house, which will probably be the case today.

At a Crossroads

As I noted in my last blog post, I found out about my clinical trial because I was connected to the IU Simon Cancer Care Center (IU Simon Cancer Care Center- Indianapolis).   Because IU Simon is a teaching hospital clinical trials are a well-known source of care.  That is not always the case with community hospitals.  

 

One of my challenges when diagnosed in 2012 with lung cancer was the lack of specialists in the field of lung cancer in my city.   The oncologist I initially saw (and who gave me my diagnosis) was inexperienced and made me so angry that I decided to seek a second opinion.  I ended up seeking three.   Because I was lucky enough to come into quick contact with WhatNext.com (an online cancer support group of peers) I found support and information there and was led to IU Simon, Indianapolis- one of the leading medical facilities in the nation.  

However, throughout my first round of opinions, I did talk to one other cancer facility about 45 minutes from my home town.   After talking to their oncologist (too gloomy) naturopaths, mind-body specialist, and some other specialist in their multidisciplinary foursome I never heard the word survivorship.  I was given the option of a clinical trial they were running. 

The first words out of the mouth of the nurse running this program were, “Just to be frank, I want you to know that the minute you become involved in this clinical trial we will own you.”   She also called me a cougar because she mistakenly thought my 38 year old son was my boyfriend.  That was so much for the personality of one nurse who seemed quite beleaguered.  Needless to say I had no interest in participating in that clinical trial.

I decided to go ahead and go through chemo with Dr. Einhorn at IU Simon Cancer Care.  

As anyone knows who has been involved in cancer treatment, as a patient or caregiver, cancer is a mind game and will take you to places in your head that no one really wants to imagine. 

After chemo put me into remission, and I had a good long period without cancer drugs at all, the news of progression was disappointing, but not unexpected. 

I was at a crossroads- I felt that if I went the chemo route I would go into remission again, but had been told by my oncologist that it would not last as long as the last remission.   I knew I could try another type of chemo- but that is always a toss-up.   Why not try a clinical trial with a drug that had promising results so far and would use my own immune system to fight the cancer.  

 

I had read about immunotherapy quite a bit after my diagnosis, but it was not yet available when I was diagnosed and still isn’t for most cancer patients.  

The involvement in a clinical trial was a chance for me to utilize this promising drug.  Because the hospital I lived close to (a community hospital) was participating in the trial I was given the access I needed to be able to participate.  Many cancer patients do not take part in clinical trials because of the travel involved.    The benefits to patients and community hospitals are significant when the hospital is equipped to play a part in a clinical trial.

When I was first approached about taking part in the clinical trial I am now involved in with Nivolumab, I set about finding out all I could about the drug.   My peer counselor at Lungevity, Jill Feldman, put me in touch with a man from Baltimore who had been involved in the first Phase I clinical trial for the drug in 2008.   When I spoke to him on the phone, he was excited about the drug, and told me that when he decided to go ahead with the trial his thoughts had been, “What do I have to lose?”   

He is still kicking and in great shape.  

Unlike my friend in Baltimore, my thought process did not work along the same lines as his did when making my decision.   My thoughts were more like, “What do I have to gain?” 

Frankly, I had everything to gain- and I will tell you why in a later post. 

Nivolumab – Drive through Cancer Treatment

 I have been participating in a clinical trial for Nivolumab (Opdivo) since October here in my hometown at a local community hospital.   I initially became aware of the trial when a slow progression was noticed in August of 2014, after an SVT episode.  

I had been monitored before by my oncologist at the IU Simon Cancer Care Center in Indianapolis.   My diagnosis on November 12, 2012 led me to four rounds of carbo/taxol/ avastin and then remission.  During this remission I was on maintenance Avastin for approximately 8 months and then taken off of all cancer drugs until the progression was noticed. 

I was given three options when the progression was found.

1)      Do the same chemo as before

2)      Do a different chemo

3)      Try the clinical trial with Nivolumab

Most of the clinical trials for Nivolumab are set up on an every two weeks infusion protocol.   

Driving from my hometown to Indy in the winter did not seem doable and luckily, (and unusually) a clinical trial using Nivolumab was being performed in my hometown.  As soon as I got home from Indianapolis and my consult with my oncologist, I set about trying to find out how to get involved.  

I was accepted into the trial and began the first infusion in October of 2014.   I have had two CT scans since and both show stable –no progression.   At first my side effects were coughing, a rash, runny nose, and some breathlessness.   Now, in later March, after approximately 9 treatments, the rash has alleviated, do not have much of a cough, but am breathless.   The neuropathy I developed due to chemo has alleviated and energy level is good. 

When I began the trial the infusion was set up for one hour-now they have set it up for one half hour- so it is not such a big jab in the day.  However, I did have a reaction in the beginning of the treatments and so now have to have two Tylenol and Benadryl before I am given the Nivolumab.   The reaction was weird.  It just felt like a bad pain in my back, no swelling or anything like that.  

I have also developed wheezing.   I did not wheeze before I began this treatment, although I was short of breath.  My doctor has prescribed an inhaler and that works well. 

Since my treatment is so close to home, my son drops me off, and when I am close to being done my daughter comes and picks me up. 

Drive-through Cancer Treatment at its finest.  

Seven Reasons Why I Participate In Clinical Trials

In the past three months I have been participating in a clinical trial.   Here are seven reasons why.

Why a Clinical Trial?

“Double the number of lung cancer patients participating in clinical trials: The Partnership will help patients understand the importance of participating in clinical trials, which can lead to new cutting-edge therapies and treatments, as well as work with physicians to ensure greater participation among their patients. The Partnership will substantially increase the number of lung cancer patients who participate in clinical trials annually from less than one percent of eligible patients to 5 percent”. Free to Breathe -Lung Cancer Partnership

Seven Reasons Why I Participate in Clinical Trials

What to do With the Cremains...? Would You Like to be a Tree?

Is there Life after Life ?

After reading this interesting commercial about turning into a tree after death, I was reminded of an article I wrote several years ago.

This article was about the innovative environmentally friendly methods that were being used to move from this life to the next.

I titled the article" Bury Me Green".  I hope you like it.

By April Brewster Smythe

Boomers just like to change things. It is a fact that they started the first Earth Day and have lifted the sales of organic foods into the stratosphere. Now, though, boomers want to go home green. Not to their earthly homes -no! Home - that place after life. Wherever we might believe it will be. Green funerals and burial products have just begun to find themselves on the national radar.

Connecticut, Indiana, Louisiana, Nebraska and New York all require that funeral directors are involved to some degree over that last rite of passage. But, the other 45 states are fine with green goodbyes on private property and privileged handling of the deceased body. Here are seven ways to be eco-savvy after saying goodbye to this good green earth.

1) Request to be wrapped in a natural-fiber shroud. The greatest value concerning a natural fiber shroud is that pollution is eradicated. And you can choose what type of shroud to wear before your demise. No blue suit or silly pink dress for you. It must be made of natural fiber and be biodegrable. 

2) Forget the embalming fluid. I have always felt that being embalmed was pretty gruesome. Although, it is true that the dearly departed would not know that horrible chemicals have been shot through their veins, it is still awful to think that those chemicals are being left behind to seep into future generations. Believe it or not, a projected 827,000 gallons of embalming fluid, which contains cool stuff like methanol, formaldehyde and phenol are buried in America each year.

3) Go home in a pine box. What was good enough for your ancestors before the Civil War can be good enough for you. And from what is being learned, assembling a regular pine casket doesn't take much more than a screwdriver. Many are discussing decorating their pine boxes with symbols of events taken from their lifetime. If they were a mechanic, they could use an impression of a screwdriver to place on the box. Nifty, huh?   I think I would like to have a picture of me paying bills and doing dishes- two of the more frequent activities of my lifetime. 

4) Save the high cost of the traditional funeral. Funerals now cost upwards from 6,000 dollars and that is very cheap. Get a pine box, slip on a shroud and find a nice woodland cemetery and you might depart for as little as one thousand green ones.   Or forget about the box, and get cremated and turn into a tree.  Cremation is cool or should I say HOT! 

5) Ecopad-  If you don't like the idea of a pine box, or even a compost able urn, try the Ecopad. This is a wood coffin shaped in the form of a kayak. Happy sailing!

6) Call for your final resting place to be in a very eco-friendly setting. Since more and more green burial grounds are beginning to take shape, the boomer generation should have no problem with this. Some families have already begun this journey with parents, and other kin. One man stated that he received a kind of healing effect when burying his mother in a woodland area. Using a tree or another type of natural symbol to commemorate the sacredness of the area is also an alternative.

7) Search the Net for green burial grounds. Place the term 'green burials' in a Google search engine and you will receive 1,020,000 hits.

As is apparent, living green has been proven to be a cleaner and more economically feasible way to spend our time here on earth. Why not leave it the same way?

Dumb Things People Say to Us Cancer Survivors ( I Know this is a Poorly Written Headline-after all, I am a Writer...!!)

Recently, Whatnext.com offered an article titled What Not to Say to Someone Who Has Cancer - and I want to state that this article not only had its moments, it was true to the point of catastrophe!

So, I decided to take one comment at a time and respond to each one.   Let me start by saying that I have had about all of these statements spoken to me at some point in my cancer 'journey'.    I guess there is no end to stupid or thoughtless or maybe the real word is uncomfortable.

Because I believe that even while us cancer survivors are still living those who walk around without cancer feel kind of guilty.   Or lucky!    Or superior!

" I probably do not have cancer because I move my legs every night  before I go to bed."  That's a line I heard from a person I would never name.

' Cancer does not run in our family."   Interesting, but probably not true.   Cancer has touched someone in your family.  It might have been your great-uncle Sid who no one knew about - most of us do not know what everyone in our family died of or are currently dying from.

" I have never smoked, eaten a hamburger, and walk 50 miles a day."   Yes, I made this one up- it was unthinkable not to.

There is a condition known as survivors guilt.   It is used in the context of surviving the death of a loved one, or a known one.  There was a movie with some handsome actor where he was the only one who survived a plane crash - he did not only have survivors guilt - he also became fearless and would take crazy walks on high roofs and do balancing acts on skyscrapers.

"Why did he/she die and not me?"  Why am I still here?"   That's survivors guilt.

Believe it or not I think there is LIVING Survivor's Guilt- you know something like the Living Bible, but without the religious overtones.

In the next few days I will begin to respond to each one of these comments that Whatnext.com brought up- till then-  stay off of high roofs and skyscrapers.



"Waylon Jennings was a guitarist for Buddy Holly's band and initially had a seat on the ill-fated aircraft on The Day the Music Died. But Jennings gave up his seat to the sick J.P. "Big Bopper" Richardson, only to learn later of the plane's demise. When Holly learned that Jennings was not going to fly, he said, "Well, I hope your ol' bus freezes up." Jennings responded, "Well, I hope your ol' plane crashes." This exchange of words, though made in jest at the time, haunted Jennings for the rest of his life.^[7][8] Jennings, who later became a country music star, expressed survivor's guilt about Richardson's death."

Author's Note:  This quote by Waylon Jennings shows that people can say dumb things even BEFORE someone dies or gets sick.  

BAD LUCK & Cancer

I  have undergone five treatments so far, and had my first CT scan last Friday.  It showed that there was a 7% reduction in tumors, which means I am stable.   Apparently this is good news.  Of course, I was hoping that they would say, "Cancer, what cancer?"   But, I guess you might call that denial.

Sometimes, I have to admit I am a little nervous about participating in a clinical trial.  I knew going in that if I just went ahead and did the chemo again it would put me in remission.  I have been told that going into remission after a chemo you have utilized before doesn't last as long.   My oncologist told me that after all is said and done I will have probably tried all there is to offer.

Actually, the real truth is that cancer sucks!

Recently, a study came out saying that people who get cancer just have bad luck.  Of course, this stirred up a big controversy, especially with those who think that environmental factors play a huge role in the development of cancer.

Since I am not a scientist or any kind of medical professional, I decided to agree with the study.

It is bad luck when a person gets cancer and has to learn to deal with it day after day.  It is bad luck to get a grumpy oncologist who insist on giving an expiration date to a lifetime of plans.   It is bad luck to know that even if you could go back and stomp out that last cigarette you had twenty years ago you would probably still get cancer cause your grandfather, or some other ancient relative had it.

I call that bad luck.

But, for today, I am happy to be alive and kicking.

I call that GOOD LUCK!