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!!!

Shine

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?”

 

 

 

Advocate for Yourself!!

As anyone who knows me knows, I am a big proponent of clinical trials. But, recent events make this post one that I feel needs to be written.

Bud (in the white shirt) – just a month or so before he passed
away. Friends and family met for lunch.

On August 30, 2017, my friend Bud Bivens passed away from stage 4 non-small cell lung cancer. He leaves behind a bevy of great friends and loving family members. He will be sorely missed.

Bud’s cancer was not diagnosed until late June of 2017. Only a week or so before, he had celebrated his 68th birthday. Bud was active. He loved to bowl and to do other activities that kept him moving.

He felt good and seemed strong, but he had developed a persistent cough. He tried to get in to see his primary care physician  (PCP), but she was too busy to make time to see him. Her office suggested that he go to Urgent Care if his cough persisted. It did.

At Urgent Care, an x-ray was immediately ordered and Bud was told to get to ER right away. It was evident that he had late stage lung cancer and needed more help than could be provided by Urgent Care.

Bud was admitted to the hospital. A series of scans and tests were run. Because he was on blood thinnners, the biopsy was delayed for a week. Once the biopsy was done, Bud requested that they test the tissue for genetic mutations.

Treatment could depend on what was found through the mutation testing. If he had a high PDL-1 count, immunotherapy might be a good option. If he had EGFR, ALK, KRAS or other mutations, targeted therapy drugs could be more effective and less harsh than traditional chemotherapy.

Unfortunately, mutation testing takes a couple of weeks. However, while medical professionals waited on the results, Bud was sent to radiation to have several small tumors eradicated from his brain, using a gamma knife.

Clinical Trial … or Not …

I had had such phenomenal results from the clinical trial I had joined 4 years ago that we all were excited and hopeful that Bud could also get into a trial. I did and still do believe that patients get the latest and greatest that research has to offer when participating in a trial.

I also believe that the level of care and attention a patient gets when in a trial is magnified. I loved being in the trial I was in and would readily join another.

However, when waiting on a trial allows your fast-spreading cancer to continue sprialing out of control, a trial is not the best option. Your best option is to begin treatment NOW.

Bud’s treatment was delayed six weeks while all of the trial requirements were being met, such as being cleared by his cardiologist,  waiting on results from the mutation testing, and allowing his body to rid itself of blood thinners, etc.

Those of us who knew and loved Bud were devastated to watch him go from a virile man to one dependent on oxygen in just a matter of a few weeks. He could barely speak because his cough had gotten so bad. His movements were limited because his oxygen levels tanked with the slightest amount of exertion. It was clear to us that Bud was going downhill way too fast.

And, yet, the doctors drug their feet. Weeks passed with nothing being done. Weeks that saw Bud’s health decline more and more.

Finally, a trip to the emergency room resulted in Bud once again being admitted into the hospital. He had still been given nothing to combat his cancer. His doctor was still waiting around to try to get him into a clinical trial.

Some of us worried that this trip to the hospital was the last one Bud would take. His health was continuing to decline. Day by day, even those with him every day could see that he was failing. He was losing weight, couldn’t eat, and the cough was relentless.

A forthright doctor told Bud that if they couldn’t get his oxygen levels up to the high 80s, or preferably, into the 90s, they would have to intubate. Once intubated, the expectation was that it would fall to his family to decide whether and when to pull the plug on their dad’s life.

The idea of putting his family through that terrified Bud. He never showed much fear in the face of his disease, but making his family face such decisions was the one thing that I saw bring tears to his eyes.

Chemotherapy … Treatment at long last

While in ICU, the doctors decided Bud might have pneumonia hiding behind his tumors so they started heavy duty antibiotics. The antibiotics meant that Bud was no longer going to be eligible for the clinical trial so, at long last, chemotherapy was begun.

Bud rallied. Whether the chemo or antibiotics or both worked, we don’t know. But, Bud improved enough so that he was able to go back home. We were all elated. There was still hope.

Unfortunately,  he wasn’t home for long. His oxygen levels tanked. Even a level of 70 was a dream. Somehow, he managed to survive it dropping down into the 40s. When, despite valiant efforts, it couldn’t be brought up to a sustainable level,  Bud made his last trip to ER and, subsequently, to ICU.

He refused intubation. He was given morphine in increasing amounts. He passed away peacefully on August 30, 2017, surrounded by his loved ones. Bud will be greatly missed by many of us.

His brief battle against lung cancer makes me ready to push even harder to make people aware. First, if you have shortness of breath or a persistent cough, get it checked out. Sooner rather than later.

And, the point of this blog entry … we will never know if Bud’s life could have been extended or saved if doctors hadn’t drug their feet. It seems his oncologist was more interested in getting him into a clinical trial than into treating him. It seems he was viewed more as a potential subject than as a man whose cancer was quickly ravishing his body.

I hope through this blog entry readers can see that those who cared about Bud could see him declining day by day, even hour by hour. And yet, his doctor told him that she was shocked by how aggressive his cancer was. She had no idea that it was taking over his lungs so quickly.

Was she blinded to it because all she saw was a subject for her clinical trial? I hope not, but I am fearful that’s the case.

If you are a patient or a caregiver, please. Do not be patient. Do not rely on your doctor or medical team to know or do what is best. You and your family and friends may not be trained in medicine, but may see things in a more realistic way. If things don’t seem right or don’t seem to be moving fast enough or in the right direction, make waves. Make BIG waves. If one doesn’t listen, move to the next.

Again, none of us know if Bud’s life could have been extended if they would have started treatment within a week or two instead of after 6 weeks. But,  I will always believe more, much more, could have been done for him.

His experiences have reiterated to me that I care more about what happens to me than doctors do. I know how I feel and I  know if something doesn’t seem right. And, I won’t sit idly by while doctors wait for who knows what.

I hope you won’t either.

RIP, Bud. You are missed.

 

Washington, DC – The Tour … and More

I posted about my exciting Wednesday (9/16/2015) in Washington, DC, but I have more memories and pictures besides that one very awesome day!

I want to be able to relive it again and again … so am writing about it now so that I will remember everything in the days to come. Chemo brain … old age … a combination??? I don’t know, but my old noggin doesn’t necessarily retain thoughts and memories like it once did.

I’m not complaining! I just have to make concessions and do things differently so that I have ways to jog the memories.

So, without further adieu, let’s get on with the story!

I arrived in DC on my birthday, 9/15, around one o’clock. I was so grateful that AACR allowed me to go a day early so that I had time to rest and relax … and do some sightseeing! There was no time for sightseeing on the two days that I was there to work.

Politically incorrect or not, Redskin merchandise is everywhere!!

Our – the Dallas Cowboys – arch rivals have DC as their home. Needless to say, when I disembarked from the plane, I entered Redskin Country! There’s a lot of debate about the name of the team, but for now, it remains, the Washington Redskins.

Mandarin Oriental

I was so blessed. AACR contracted for a limo to pick me up at the airport and whisk me to the Mandarin Oriental – my home away from home for 2 nights. It is a gorgeous hotel, exceptional staff, great location, and unbelievable views!

Lobby

 

The view out of my room’s window. Jefferson Memorial, Pentagon, and an Air Force monument. Gorgeous! Day or night!

 

The room itself was not all that exceptional – nice but not that different from most (though, those beds and pillows – VERY comfy!!!!)

 

The room wasn’t special, but the bathroom sure was!!! It was fabulous! I don’t take baths very often at all, but I took a nice hot bath one night and it was great!

 

Nice! Separate shower! With fantastic water pressure (better than home!)!

 

Anyone who knows me will appreciate this one – I love paper and pens!! 🙂 They had nice pens at this hotel!

I ate a few times in the hotel restaurant – the Muze – where the staff was impeccable and the food fabulous!!! I was amazed that they held the restaurant open for me after hours when I arrived. You would have never guessed the staff was working late – they were so friendly and anxious to serve. I ate a crabcake sandwich which was delicious!!!

On Wednesday morning, I returned to the Muze for breakfast, prior to beginning my big day! I am so glad I did since breakfast had to last me until we arrived at the reception that evening. I was hungry, but not as famished as I would have been otherwise! I ate some Eggs Benedict with salmon – again, to die for!!! Wish I had some about right now!!!!! Now, the $8 coffee … it was good … but $8???? If I had looked at the price of coffee, I can assure you I would have been satisfied with water!!!

Night-Time Tour

The last time I was in DC, I didn’t get a chance to see the sights at all. This time, I was fortunate enough to get to go on a night-time tour. I still haven’t seen everything I hope to see in DC, but I got to see a lot. For that, I am very grateful.

I took a ton of pictures and I’m going to post a whole lot of them here. It is an easy way for me to find them and to see them. I hope you enjoy them, too! The tour began at  Union Station. I got there early, so I spent some time exploring.

 

Union Station – You can catch a train here … or tour buses

 

Across the street from Union Station

 

 

Union Station

 

Securities and Exchange Commission Building

 

Union Station – the flags of the Nation

 

The ceiling inside Union Station – amazing! More than 120,000 sheets of 24-K gold leafing was used to restore the ceiling!!

 

 

Many people of all types use the trains! It is a great place to people-watch!
Catch a train, eat, or shop! This is a one -stop center!! And, isn’t it gorgeous? I love the staircase.

 

Amid the opulence of gold-leafed ceilings, the Nation’s homeless…

The buildings in DC are just so gorgeous. So old and yet so well maintained. It is incredible! There is a feeling when in the Nation’s Capitol that you just don’t feel when you’re in Dallas or Houston or Denver. Power, awe, history … something!

So, the night tour took us either past or to several of the monuments. I have a big desire to see the World War II Memorial, but that desire remains. I didn’t get to see it on this trip either. Maybe next time.

Buckeye – our tour director. He was formerly a school teacher. He was very entertaining and extremely knowledgeable. He was definitely a people-person! He wanted to know a little something about each of us.

 

 

The skies, as they turned dark, were gorgeous!

We drove by Memorials and stopped for three. My camera did a pretty good job of capturing scenes as we drove by!  The pictures above were taken through the bus window.  I sat near the bus front door. I might have had better vision and clearer shots if I hadn’t sat down so quickly.

The Washington Monument

I took lots and lots of shots of the Washington Monument. I don’t quite know why, but it fascinates me. Amazingly, you can see this 555-foot marble obelisk that honors our Nation’s first President from all over DC.  I didn’t realize that until the night I took this tour.

I never got close to it. In fact, I had no idea that you could get tickets to go up inside of it. What an awesome experience that would be!! The following quote is copied from Recreation.gov:


Visitors enter the Monument and then ascend via elevator to the 500-foot level to behold sweeping views of the city. Captivating exhibits on the 500- and 490-foot levels illuminate the contrast between historic photographs and modern views, while inviting you to learn more about Washington — the man, the engineering marvel of the Monument, and the design of the city named in his honor. On descent, visitors have the unique experience of viewing selected commemorative stones expressing the sentiments of generations past awed by Washington’s impressive leadership.

Another Monument to add to my Bucket List!!!! Seeing it from afar is grand enough! But, seeing it up close sounds like an experience to remember! Tickets are required if you are going to enter the Monument.

 

 

This photo was taken when standing on the steps of the Lincoln Memorial. The Washington Memorial sits directly across from it. Notice how the Capitol is also visible.

 

This picture was taken while we were visiting the FDR Memorial. I thought it was really pretty through the leaves of the tree.

FDR Memorial

The Memorial that honors Franklin Delano Roosevelt covers 7-1/2 acres, which makes it the largest Presidential Memorial on the National Mall. This is a relatively new Memorial. It didn’t open until 1997. It covers the four terms that FDR served as President.

Stricken by polio in 1921, FDR never again walked unaided. I learned tonight that only 5% of those who contracted polio suffered with long-term effects from the disease. Only 1% were permanently crippled by it. My uncle was one of those permanently crippled, as was FDR.

 

 

 

This statute depicts a citizen listening to one of FDR’s famous Fireside Chats. Despite vast poverty affecting our Nation during the Great Depression, citizens remained hopeful for better times.
At the same time, the citizens of our Nation were starving. The deep despair of the Nation was depicted by the bread line. (Unfortunately, I was unable to get a photo when the teens were not acting silly as part of the Memorial. They have no clue what they are laughing at.)
Yes! And this remains true today. Though, in my opinion, socialism is not the answer.

 

Apparently, FDR loved water. There are waterfalls and pools throughout the Memorial. It provides a peaceful feeling. It also helps cover the noise of Washington’s Reagan National Airport that is nearby.

 

Naturally, this is my favorite of the statutes! FDR and his Scottie dog, Fala. He was a constant companion of the President. Fala outlived FDR, but was buried beside him when he passed. He is the only dog that earned the permanent honor of being depicted in a National Memorial.

 

Eleanor played an important role as First Lady as well as the first U.S. Delegate to the United Nations.

 

Visiting this Memorial at night was striking. However, I am not certain we saw it all. I think we did not. We were not given but a few minutes at each stop so we had to hurry as we viewed them.

The Martin Luther King Memorial is nearby, but I wasn’t entirely sure where. I apparently spent too much time enjoying the FDR Memorial so I did not see it. If I get to go again, I hope I can spend more time at the FDR Memorial and can find the MLK Memorial, as well.

Back to the bus!! A traffic jam caused us to divert first to the Marine Corps War Memorial, instead of the Lincoln Memorial, as planned.

U.S. Marine Corps War Memorial

My husband, brother, son, and cousin are all U.S. Marines so I have a real soft spot in my heart for anything Marine! This Memorial is certainly no exception! I had seen it several times, but never had the opportunity to get out and get up close to it. I was very glad our bus tour took us there and gave us 15 minutes or so to enjoy it.

 

 

This statute cost $850,000 and was paid for by the US Marine Corps, friends of the Marine Corps, and members of the Naval Service. Dedicated on November 10, 1954, the 179th anniversary of the USMC, no public funds were used for its creation

 

 

 

According to the National Park Service, “The US Marine Corps War Memorial is located on Arlington Ridge along the axis of the National Mall. A panorama of the Lincoln Memorial, Washington Monument, and Capitol Building are visible from its grounds.” I did not notice the Lincoln Memorial, Washington Monument or the Capitol when we were  at the Memorial. I must have been too focused on the Memorial itself.

Lincoln Memorial

Maybe one of the most famous of the Memorials, we visited the Lincoln Memorial last. During this visit, we also had a moment to spend at the Korean War Memorial. The Vietnam Memorial was said to be nearby, but I was unclear about where it was. I didn’t have time to visit it anyway. The night tour was awesome in many ways, but choices had to be made since the time was so limited.

 

Such an imposing structure! It was designed by Henry Bacon. Construction began in 1914 and the Memorial opened in 1922.  The cost of this huge Memorial was $3 million.

The 36 columns represent the 36 states in the Union when Lincoln was assassinated. The Memorial has 58 steps. They represent the two terms Lincoln served as President, plus the age of the President when he was assassinated. This famous building is featured on the back of the penny and the $5 bill!

 

 

Our 16th President, Lincoln is credited with saving the Union. Before construction of the Lincoln Memorial, there were no plans to honor any President besides our first President, George Washington.

 

Gettysburg Address

 

The Lincoln Memorial sits directly across the Mall from the Washington Monument.

We made a quick trip down beside the Reflecting Pool to find the Korean War Veterans Memorial. It gave me chills. The pictures still do.

Korean War Veterans Memorial

Dedicated on July 27, 1995, the Korean War Veterans Memorial commemorates the 5.8 million troops who served in the U.S. armed services from June 25, 1950 until July 27, 1953. During that time, 36,574 Americans were killed and 103,284 were wounded.

 

 

There are 19 stainless steel statutes, each approximately 7 feet tall. They represent an ethnic cross section of America and include 14 Army, 3 Marine, 1 Navy, and 1 Air Force members. You can’t see them in these night-time pictures, but the statutes are standing in patches of juniper bushes and are separated by polished granite strips. They symbolize the rice paddies of Korea. The ponchos worn by the troops seem to be blowing in the wind, symbolizing the cold winds suffered while fighting in Korea.

 

The Mural Wall is comprised of 41 panels and include 2400 photographs from the Korean War that were obtained from the National Archives. I would love to see the mural in the daylight. It depicts Army, Navy, Marine Corps, Air Force, and Coast Guard personnel and equipment.

The tour was nearly over. I managed to snap a few more pictures as we headed back to Union Station.

The Lockkeeper’s House. This is the only thing remaining from the C&O Canal Extension. The lockkeeper collected tolls and kept the records of commerce on the canal. What made this interesting to me is that the lockkeeper and his 13 children lived in this house between 1835 and 1855!! The canal was filled in 1872.

 

The original Post Office. The building has been leased by Donald Trump and is being renovated into a world class hotel.

 

 

Unfortunately, I have no clue what this beautiful building is. Maybe someone else does?

 

Buckeye told us the story behind this statute, but I have forgotten what it was. Anyone know?

I am so glad that I had the opportunity to see Washington, DC at night. It not only kept me from obsessing about the speech I had to give the following day, it allowed me to see monuments and memorials that I had either never seen or hadn’t seen in many years. I hope that the next time I go to DC, I can go as a tourist for at least a full day or two. Unfortunately, it is very, very expensive to stay in DC. On the other hand, all of the memorials and the Smithsonians are free to attend.

I hope you have enjoyed this tour as much as I did!