Number 100!!!!

When I went to a consult about joining a clinical trial at UTSW back in 2013, I never, ever dreamed I would still be here, writing this blog!! Remember, I was only supposed to live 4 months. I had already outlived that prognosis by several months in July 2013.

When I first started the clinical trial in August 2013, the drug I received had only numbers for a name. I had no idea what kind of drug I was receiving. Immunotherapy was not a word I had ever heard.

As time went on, I participated in a number of surveys conducted by pharmaceutical companies. The companies were seeking feedback from cancer patients about upcoming advertisements. I began to connect the dots … and realized that the test drug I was receiving was the newest and latest therapy – immunotherapy.

Not everyone has the same results as I do. In fact, my medical oncologist has said that the biggest side effect of immunotherapy is disappointment. Because it is touted these days as the “cure-all,” patients whose cancer doesn’t respond positively suffer great disappointment. Sometimes, they also live with side effects they hadn’t bargained for, such as pneumonitis or impaired liver or kidney functions. No drug is completely safe and immunotherapy is no exception.

But, for me … and for many like me … immunotherapy is a true miracle drug. The drug I get is Opdivo, aka nivolumab. Another was introduced at about the same time, Keytruda (pembrolizumab). Both of these drugs received FDA approval for use against non-small-cell lung cancer like I have at about the same time. Both had already been approved for treatment of metastatic melanoma prior to being approved for lung cancer. Other immunotherapies have now been approved by the FDA for treatment of various cancers, including lung cancer. There are other drugs currently in trial. This field of research is exploding!!

That’s good news for those of us with cancer. Five years ago, immunotherapy wasn’t considered a viable option for treating cancer. Today, it is offering great hope to researchers, physicians, and most importantly, patients and their families and loved ones.

But, this is not really an advertisement for immunotherapy. I do encourage you to speak to your oncologist about the possibility of being treated with this miracle drug, though. It might not be the right treatment for you, but it just may be!

Plugging Along

Opdivo is infused every other week. That’s a lot of doctor-going, especially for a person like me who avoided doctors like the plague prior to being diagnosed with lung cancer.  Every visit required extensive blood tests. At first, I had to have CT scans every 6 weeks. As the years went by and my tumors remained stable, we were able to extend the amount of time between scans to three months. I had so many CT scans that I learned to drink barium without gagging. That’s too many scans!!

At first, no one knew what in the world I was talking about when I said I was getting immunotherapy. These days, I imagine most lung cancer patients, and possibly patients with other cancers, are familiar with the term, if not with how it works.

Opdivo gave me back my life. I was very sick when I underwent traditional chemotherapy. With Opdivo, I suffer a bit of fatigue on the day of the infusion and some minor tiredness on the day after the infusion, but that’s about all. (My thyroid no longer works properly, a common side effect, so I have to take levothyroxine every day … That means I constantly fight a weight problem, but that’s comparatively minor (and I do have to remind myself of that quite often!).)

When I reached treatment #75 or so, I began to look forward to a big centennial celebration!!! How many other patients are out there who can say they have gotten 75, much less 100, immunotherapy infusions? I wondered about that then. I still do wonder. How many of us are there who have basically been with the drug since inception?

When I finally reached treatment #90, it was a forgone conclusion that I soon would be joining the centennial club. And, I looked forward to it with relish. I’m not really quite sure why it seemed so important to me to get to that 100th treatment, but it was a goal I really wanted to reach.

A Bump in the Road

Imagine my shock and distress when I went to see my oncologist prior to receiving my 99th treatment and learned that I was being pulled out of the trial and I would not be getting any more Opdivo! After over four years, a tumor in a lymph node in my neck finally outsmarted the nivolumab. The drug was no longer controlling it. My doctor could not and would not continue the treatment.

What????!!! I cried. I rarely ever cry. But, I cried.

Most normal individuals would have cried because their cancer was once more on the move. Not goal-oriented me. Oh no! I cried because I was just two treatments away from reaching Infusion #100. My heart was set on it. It had been a foregone conclusion that I was going to be celebrating #100.  I was nearly frantic in trying to figure out how I could still get those two additional treatments (I never looked past Treatment #100. Treatment #101 held no awe for me … just that #100 was important.)

I’ve already blogged previously about this bump in the road. In short, after much consideration, I decided to have the growing tumor irradicated. I am slowly blogging about the process, if you’re interested in reading about the experience.

Sooooo … How did I Reach #100???

So, if I was pulled from the trial, a tumor was growing, and I went through a different course of treatment, you may be wondering how I managed to reach Infusion #100. Well, it is really simple!

My medical and radiation oncologists both agreed that I should resume Opdivo treatments after completing radiation. The drug has controlled the tumors in my lungs for about 4-1/2 years. The logic of the oncologists is that it would be foolish to abandon a protocol that I have responded to so well. The tumor that outsmarted the drug, the tumor I called Wayward Tumor, has presumably been killed with radiation so we only have to worry about the tumors in my lungs at this time.

I resumed Opdivo treatments at the end of September after a break of several months. My blood test results remain perfect. I continue to feel great after a treatment. We’re back in the saddle again!!!


Imagine my surprise when I arrived at the doctor to resume my Opdivo treatments and my oncologist, his nurse, and my nurse practitioner came in bearing a 100th Infusion gift. If I haven’t said it before (I have), I will say it now: I have the most awesome medical team ever!!!

Shine is perfect! The lady who designs the sculptures says this about Shine:
“Shine could be a congratulatory piece for a milestone reached, or a healing piece to show support and belief in someone. I wanted the form to be visually uplifting… a little reminder of personal goals, met. I embellished the surface with gold to suggest inner light and energy.”

Enough said! There’s absolutely nothing more I can add except, “Isn’t she beautiful?”




What Makes a Strong Person?

I just saw a quote on Facebook:

I’ve never met a strong person with an easy past.

I hadn’t thought of that, but I agree. Do you?

I think I am a pretty strong person. And, trust me, my past (and even my present) have been anything but easy.

The way I see it, we have two ways we can approach a problem:

  1. Face it head-on. Get through it. Get past it. Live.
  2. Hide your head. Mope. Complain. Get angry. Flounder. Forever.
I’ve known people who choose number two. They seem to derive some sort of strange pleasure out of being downtrodden. It at least seems as if they hope everyone will feel sorry for them.
In years past, I had more patience with those who never look on the bright side of life than I do now. It seems like my cancer diagnosis took away my patience for putting up with people who refuse to be happy.
Because, it is a choice.
I don’t understand why a person wouldn’t choose happiness. Others want to be around those who smile and laugh and enjoy life. But, that’s not the reason I choose to be happy. For me, if I can’t be happy, joyful, hopeful … then life is really not worth living.
And, that’s an important thing to consider.
So many people I come into contact with are living their cancer. Every hour, every day, every week – cancer takes precedence over everything else in their lives. They hurt. They feel sick. They are dying. Their family doesn’t want to be around them. The sky is black. The earth is black. Their world is dark. And miserable.
My personal opinion is that if I am just muddling through dark clouds every single day, I am surviving, but I am not living. I have no desire to muddle. I have every desire to live. Really live.



My favorite flowers are yellow. I don’t know why, but they always make me really happy. Just seeing them makes me smile. The ones above are growing and blooming in January. When most everything else is dead or dormant, these flowers are flourishing.
I want to be like these flowers! Overcoming adversity and coming out of it strong!
For me, cancer is part of my life. It is something with which I must coexist. I know that someday it may take my life. But, until it does, it is not going to rob me of the days I have.
So… a strong person. We’ve been through fire. We’ve been tempered. And yes. We come out stronger.
Tonight I was discussing a football player with a friend. His name is Johnny Manziel. Johnny Football. He is a troubled young man who happens to also be a good football player. But, his personal troubles seem to be overriding his football playing, despite the fact that he won the Heisman Trophy a few years ago.
Despite his talents on the football field, his career seems uncertain. Currently, it seems no NFL team is willing to take a gamble on him. He’s a powder keg.
And, then there’s our Affluence teen. This kid, Ethan Couch, killed several people when he drove drunk. He got off with a slap on the wrist on the defense that he was so rich that he didn’t learn right from wrong. You never see a picture of the kid where he is smiling. No, he always has a scowl on his face. A tough thug. The world was his playground, but his personal problems seem nearly insurmountable.  If he doesn’t end up in jail or prison, I will be very surprised.
These are people who seem to have everything going for them. And  yet, they are miserable. They are weak. They’ve not been through the fire. (Though the direction they are headed might lead them to the fire, if they’re mentally strong enough to get through it alive.)
When I think of strength, for some reason, a picture of a blacksmith comes to my mind. Bent over an anvil, beating and bending a red-hot piece of iron, forging it into something useful. We, as humans, need to go through the fire to become strong.
Generally, I don’t dwell on the trials and tribulations I’ve been through. I just try to get through them and come out on the other side, still smiling.
I won’t outline the adversities here that have tempered me into the person I am today. But, I can say that each and every one of them have joined together to make me who I am today. And, I wouldn’t trade those experiences, even if I was miserable for awhile as I made my way through them.
Through it all, there is a Bible verse that stays with me. Perhaps it is my favorite. It is certainly one I rely on a lot.

I can do all things through Christ who strengthens me. Philippians 4:13 

This I believe with all of my heart. And it is a promise I rely upon every day of my life. I might not understand the whys, but it doesn’t matter. God knows why. That’s all I really need to know.