Category Archives: UTSW

A Day at the Hospital

I decided to do something a little different today when I went for my blood draw, doctor visit, and immunotherapy infusion. I thought it might be interesting to somebody if I documented my visit, from start to finish.

I didn’t get every picture I hoped to get. My oncologist didn’t see me today so I didn’t get a picture of him or his precious nurse (who will be leaving any day to have her baby). My favorite oncology nurses had other patients today so I also didn’t get any pictures of nurses in the infusion area. Next time, I hope!

We arrived at the hospital at 12:15. We were supposed to be at the hospital by 12:30. You check in at the main desk and wait to be called.

I didn’t look at my watch, but I am certain we didn’t wait more than 10 to 15 minutes before I was called back to have my blood drawn. At UTSW, the wait is rarely very long.

 

Accessing the Port

Right after I began treatments at UTSW, I got a port installed in my chest. You can read all about it at http://mybattlewithlungcancer.blogspot.com/2013/08/got-port.html. Unfortunately for me, I received all of my chemotherapy prior to going to UTSW through an IV in my arm instead of getting a port from the get-go. My veins are shot now. You can’t have poison infused into your body through those vessels and expect them to stay supple and healthy.

At any rate, with a port, getting blood is easy-peasy. It takes a special oncology nurse to access the port. Some are better at it than others! But, overall, there is very little pain involved and there is NO searching for a vein or sticking you again and again and again trying to get blood to flow.

At every visit, which in my case is every two weeks, a very comprehensive blood test is done. From three to five tube of blood are drawn and tested prior to visiting with the doctor. If your blood levels are not good, the oncologist may decide to put off chemo or might change the amount of chemo. In my case, there has never been a problem. I am often heard saying that if I didn’t have cancer, I would be as healthy as a horse.

There are several nurses who draw blood through a patient’s port, but I usually get Grace. We hit it off from the get-go. I love to see her every two weeks and I think the feeling is mutual.

 

We both have to wear masks while she accesses my port in order to reduce the chance of infection. I hate wearing the mask. My glasses always fog up while I’m trying to talk!

Below, you can see the needle that Grace is going to use to access my port. It is rather large!

It only takes a few minutes to get my port accessed and the blood drawn. Because I really like Grace, we often visit for a few more minutes before I return to the waiting room. You can see all of the tubing attached to the port. When I go for my infusion, it will be administered using this access point. Notice the pink circle on my sweater. Any guess what that is for?

Believe it or not, people were leaving the hospital with their ports still accessed. The pink dot is supposed to alert hospital personnel that my port is still accessed. I personally can’t imagine someone leaving the hospital with all of that tubing sticking out of their chest, but that’s just me. Chemo brain, perhaps, makes some people forget.

Back in the Lobby

I don’t know why, but this man felt special to me from the beginning. You see all kinds (including crazy kinds like me) at the hospital. This precious man seemed to lack confidence and had something wrong that caused him to shake violently. Another patient offered to open his lunch after he fumbled with it for a few minutes.

As it turns out, I ended up feeling so sorry for the man. It seems his wife is the one with cancer. I don’t know if she turned mean after she was diagnosed, if she was having a really awful day, or if she’s always been mean. She yelled at the man (loud enough that we could all hear it) for not sitting up straight and then for shaking while eating. Hello?! He obviously had a physical problem that caused the shaking. Now, it is possible that his shaking is worse when she is around. If she was MY wife, her being near would make me shake. Violently.

When they came to get her to take her back to see the doctor, the man still wanted to be supportive. He asked if she wanted him to come along. She rudely told him she didn’t care one way or the other. So, he went with them, trailing behind a bit. But, long before they would have reached the doctor’s office, he was back in the waiting room. I guess she decided she cared if he came after all and sent him back to us. I didn’t, but I just wanted to hug him.

On a happier note, we have had rain here in Dallas day after day after day. I’m not complaining because we needed the rain desperately. Last year, by the end of April, we had received only 3.93″ of rain. This year, we had been blessed with 14.67″ and so far, it has rained nearly every day during the month of May. It was exciting to see a break in the clouds while we were in the waiting room. We could see bluish skies and even a hint of sunshine!!

 

I am a people watcher and I tend to make up stories about the people I’m watching…. Well, this guy looked like a thug to me with his shorts down far below his butt. He also had jailhouse-appearing tattoos all over his arms and neck. I HATE seeing men with their pants worn far below their waists. I really think it is out of place at a cancer-treating facility.

I hate the way the guy dressed … and if I was a betting woman, I would guess he hasn’t been out of prison for all that long. I’ll give credit where credit is due, though. His children were very well behaved and he seemed to take an active part in their lives. So, I guess pants worn with the waistband closer to the knees than the hips is not a clear indicator of how a person acts.

I did get a kick out of watching him try to walk when they left. His shorts were so low that he couldn’t get a decent stride going. Sheesh. Who thinks that look is cute or macho or whatever? Not old fogie me.

People watching makes the time fly by! Soon, an aide comes to get us to take us to the doctor’s office.

Doctor’s Office

Things at UTSW move along like clockwork. I hear about others who go elsewhere that have to wait and wait and wait. Not so here. It is very, very rare that we don’t get in to see the doctor within an hour after the blood is drawn. The reason for the hour wait is that it takes an hour or so for the blood testing to be completed.

I was hoping I would see the doctor today so I could get a picture with him, but I guess he was too busy. I need to quit referring so many people to him! Maybe he’d have more time to see me!! (I am not honestly complaining. I am delighted that more and more of my friends are seeing him because I hope they have the same luck as I have with him treating them.)

On the other hand, I love Sharon. She is very thorough and we have a GREAT time laughing with one another. My visit usually lasts longer than it probably should because we enjoy the time together.

Sharon wasn’t quite sure what was going on until after our selfie was taken! You can tell by her beautiful smile that she’s a lot of fun. She’s also very smart and very dedicated. She’ll take as long as you need her to answering questions and addressing concerns.

My blood tests were fine. My CT scan that was done last week showed that my organs are “unremarkable” – a good thing!!! I have no swelling or lumps. The exam doesn’t take too long. Since all is well, the immunotherapy I receive can be ordered from the pharmacy. We return to the waiting room one last time.

Waiting Room Again!

 

In the lobby, there is a giant Chihuly sculpture. When I first saw it, I hated it. I have grown to love it over time. It is very intricate. What do you think? Love or hate or indifferent? Can anyone be indifferent to such a piece?

We now have to wait for a chemo room to become available. And, for the pharmacy to get the drugs ready.

Robert always comes with me to chemo. It is a long boring day, but he never complains. He doesn’t have to come, but it sure makes the day go more smoothly having him with me. I have read of so many couples that break up when one is diagnosed with cancer.  I am so happy that our marriage is probably stronger now than ever before. Which says a lot. In August, we celebrate 41 years of wedded bliss!

Infusion Room

It isn’t long before we’re escorted back one last time. This time, we are going to the infusion room. Where I received chemo, the infusion room was one giant room where everyone getting a treatment sat in chairs side-by-side. As much as I enjoy people watching, I always hated that room. It was such a big, cold, depressing room, just full of cancer patients receiving poison into their veins. Some people got sick, some slept, some visited … but it just seemed it should have been done in private.

When I switched to UTSW, I was DELIGHTED to find that we would have individual chemo rooms. Each room is a little different. The one we had today was relatively small … but certainly big enough to be comfortable. There is a television on the wall across from the infusion chair. The infusion chair itself is very comfortable and I usually request a heated blanket when we get to the room. I love those heated blankets!

 

The chairs for the visitors are not nearly as comfortable as the ones provided for the patient!

An aide always brings us to the infusion room, retrieves the warm blanket and any requested snacks. I am not sure what this aide’s name is, but he is my favorite in the chemo area. He is always so cheerful and he’s a hard worker. He wasn’t the person who brought me to the infusion room today, but he walked by and saw me in the chair. “Hello, Mrs. Fernandez,” he said. I asked him if he’d come take a selfie with me and he obliged!

This is the best picture I could get of how the port looks when it has been accessed and readied for an infusion. In the second picture, you can see how all of the tubing is attached. I think I have already said it, but the port makes getting a treatment much, much easier.

 

My infusion takes one hour. When I was getting chemo, an infusion could take from two to six hours. I like the one hour treatment much more!! So, my treatment began at just minutes after   3  PM. And I become a clock watcher!

YES!!! It is 4:00 … the treatment should be over! Most of the drug has dripped into my blood stream. Where is the nurse to disconnect me??

 

 

What’s going on? Where’s the nurse? It is now 4:15 and here we still sit! Typically, the nurse appears immediately when the hour of infusion ends. Something must have taken my nurse’s attention today because she was late getting to our room.

It isn’t too long, though, before she comes in and prepares me for departure. She has to flush the port with herapin, disconnect the port access, give us a parking pass, and send us on our way. We are soon outside and waiting on the valet to bring our car.

You can’t really tell from the photos, but the campus at UTSW is amazingly beautiful and serene. One of these days, I am going to take my good camera and spend an afternoon exploring the grounds.

 

Rewards

Because chemo day is a long day, we nearly always eat a leisurely breakfast before we go and then treat ourselves to a nice dinner afterwards.
Tonight’s treat: Dunston’s Steak House.
As we drove into the parking lot at the restaurant, we passed this gorgeous cactus. I wonder if it is because of all of the rain we’ve had that it is blooming like it is? It was so beautiful that I had to stop and take a few pictures before going in to eat.

 

 

It smells divine sitting near the wood-burning grills!

Steaks were cooked to perfection and the baked potato was delicious. A perfect ending to the day!

Why the Inequities?

You know, I try to stay really upbeat most of the time. I am fairly successful at it. Like Dann Wonser says, most trials and tribulations we lung cancer survivors face are very tiny, while cancer is VERY BIG. (http://www.dannwonser.com/blog/a-little-disaster-can-be-a-good-thing/5/4/2015 … you really HAVE to read this, it is hilarious!). I think many cancer patients agree that we no longer sweat the small stuff … and most everything we face in our lives besides cancer is small stuff.

But, I came across the following article today: http://www.ksat.com/content/pns/ksat/news/2015/05/08/questions-raised-over-funding-for-cancer-research.html. It distressed me a lot. As did most of the reaction I received after I posted on Facebook about it.

The article was written by Myra Arthur, an anchor/reporter for ABC affiliate KSAT-12, a San Antonio, TX affiliate. Ms Arthur questions, as do I, why funding for lung cancer research trails so far behind that of other cancers, especially breast and prostate. Her advocacy makes me wonder if somehow her life, too, hasn’t been touched by lung cancer. Most people ignore it otherwise. That’s just the sad fact.

Facts – Ho Hum … But Necessary!

Here are some facts about cancer – some good, some not so good:

1. The two largest federal agencies that fund cancer research are the National Cancer Institute and the Department of Defense. These two agencies funded breast cancer research at $802 million in 2014. Prostate cancer research received $334 million.

2. Breast cancer is expected to be found in 234,190 men and women in 2015. (That’s right! Men can get breast cancer, too!) During 2015, 40,730 people are expected to die from breast cancer. That’s too many, for sure, but basically, if you get breast cancer, you have very good odds of surviving at least five years. These odds have increased exponentially over the past few years as more and more attention has been given to the disease.

A whopping 29% of all cancers diagnosed will be breast cancer. About 15% of all cancer deaths result from breast cancer.

3. Prostate cancer is the most common cancer among men. It nearly seems like every man is going to be diagnosed with it if they live to be old enough. I have gotten so cavalier about it … “oh! prostate cancer. minor inconvenience. treat it. be done.” I wasn’t quite so sure of myself when one of our very best friends died from it only months after diagnosis. (I think he waited REALLY long before seeking treatment and it had metastasized throughout his body.)

So, the facts for prostate cancer are: 220,800 men are expected to be diagnosed with prostate cancer during 2015. Prostate cancer will account for 9% of all cancer-related deaths this year.

4. And then there’s lung cancer. Research funding from the two major federal agencies for this disease during 2014 was a whopping $265.6 million. Let’s remember. Breast cancer got $802 million and prostate got $334 million. Hello????

During 2015, it is estimated that 115,610 men and 105,590 women (total of 221,200) will be diagnosed with lung cancer. Most of these diagnoses will be late stage because lung cancer typically doesn’t make itself known until it has metastasized. It is somewhat treatable if found in early stages, but in late stages, the prognosis is downright bad.

Lung cancer is expected to claim the lives of 86,380 men (that’s 28% of all cancer deaths) and 71,660 women (26% of all cancer deaths) for a total of 158,040 people succumbing to lung cancer in 2015. An awful lot of families are losing their children, their moms and dads, and/or their grandparents to this insidious disease.

So, the likelihood that you’ll get breast cancer if you are a woman or prostate cancer if you are a man is somewhat greater than that you’ll get lung cancer. Pray that you get one of these cancers and not lung cancer. Because, if you get breast cancer, you have an 89% chance of surviving at least five years. Prostate cancer has even better odds. Over 99% of prostate cancer survivors will still be living life in five years.

But, if you are one of the unlucky ones who gets the lung cancer diagnosis, you have much worse odds. Let’s just take a quote right out of Cancer Facts and Figures 2015, a publication of the American Cancer Society:

 The 1- and 5-year relative survival rates for lung cancer are 44% and 17%, respectively. Only 15% of lung cancers are diagnosed at a localized stage, for which the 5-year survival rate is 54%. More than half (57%) are diagnosed at a distant stage, for which the 1- and 5-year survival is 26% and 4%, respectively. The 5-year survival for small cell lung cancer (6%) is lower than that for non-small cell (21%). 

(http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-044552.pdf)

Wow.

Outrage

So, does this make any sense to you? Because it sure does not make sense to me.  It breaks my heart at the same time as it totally infuriates me.

Did you know that ONE in FIFTEEN will be diagnosed with lung cancer? Those are some pretty scary stats. Most of us have more than 15 people in our circle of family and friends. That means you are very likely to be directly affected by lung cancer. Either because a loved one is diagnosed or because you, yourself, get that news someday. When the word comes that you or your loved one has lung cancer, I wonder if you are going to wish more had been spent on lung cancer research? Because right now, the odds that you will live even one year after lung cancer is found in your body are very, very slim.

There is no stigma associated with getting breast cancer or prostate cancer or colon cancer or, I suppose, any other cancer. But, people, in general, seem to think that people who get lung cancer deserve it. After all, isn’t lung cancer the disease of smokers? People know they are testing fate when they pick up those cigarettes. So, let them just suffer the consequences of their actions, right?

Well … first of all … NO ONE and I do mean NO ONE deserves to get cancer of any kind. It is a fact of life, I guess, that most all of us will be impacted in some way by cancer if we live long enough, but none of us deserve to get it.

Cancer is not a fun disease to treat. People are sick, sick, sick. And often lose their hair. And all of their energy. And their memory.

And, it is certainly not a cheap disease to treat. One … ONE chemo treatment that I had cost over $34,000 and that was after a $22,000 grant was applied. I had those treatments every three weeks for six or seven months. And, that was just the cost of the drug. It didn’t include the doctor, blood tests, or facility usage. Cancer can wipe a family out financially in no time.

But, back to the stigma associated with lung cancer. Did you know that 60 to 65% of all lung cancer survivors (because you become a survivor from the moment you are diagnosed) either have never smoked or are former smokers? In my case, I had broken the addiction five years previously. My cancer is one that both smokers and non-smokers get so there is no clear evidence that my smoking caused my cancer. It is also the same kind of cancer as my dad died from back in the 1970s.

I attended a LUNGevity HOPE Summit in Washington, DC last week. I was amazed at the 150 survivors at that event. One girl was only 20. Her late-stage lung cancer was found (finally) when she was 19. Another beauty was 24. She lost part of a lung to lung cancer. Heart-breaking. Neither girl smoked. Both were gorgeous. Both were physically fit. Both girls had such a difficult time convincing their doctors that there was something more than asthma going on that they didn’t have their cancer discovered until it had metastasized.

Even doctors have an errorenous  image in their heads as to what a lung cancer patient looks like. So, while they are lollygagging along treating symptoms and never even entertaining the idea that there might be something more serious going on, the cancer cells are spreading all over the body.

I met men and women who bicycle hundreds of miles a weekend. Coaches. Vegetarians. Physically fit, well-nourished, non-smokers. Lots of them. Lung cancer survivors, one and all. I don’t know that an average age of attendees was calculated, but I would guess it was around 45, maybe less.

All of this is to say that your mind’s image of a lung cancer patient is probably wrong. He or she is probably as physically fit as you are. And, s/he is probably not as old as you imagined. And definitely likely does not have tobacco stained fingers that are still shakily raising that nasty cigarette up to be smoked. He or she might be your sister or your brother, your mom or your dad, or your best friend. Or you.

The stigma that just won’t go away STINKS. Worse than cigarettes and we all know how bad they stink. And, the stigma is far more deadly than cigarettes.

It is causing doctors to misdiagnose or delay diagnosis until the odds of survival have decreased to almost nothing. It is causing the general public to think it is fine to underfund lung cancer research. It is causing a lot of people to die deaths they do not deserve.

The Good News

The news is BAD when we look at funding, awareness, and the number of people being diagnosed and dying from lung cancer. There really are not a l ot of optimistic things to say about those things.

But, in spite of the limited funding, our scientists and oncologists are making significant progress. This is an exciting time in the research field. They are on the brink of making some discoveries that could change some of those dire statistics.

At the HOPE Summit, we heard from some of the up and coming talents in the world of lung cancer research and they were inspiring. We have targeted therapy drugs coming. Immunotherapies. Perhaps even some chemotherapies that will be less toxic. I can’t imagine the inroads that would or could be made if only lung cancer was given a significant amount of funding like the other two major cancers get.

Tehre are a few groups out there working hard to raise awareness. As awareness is raised, perhaps more big corporations and well-known names will jump on the bandwagon. CVC has recently begun a campaign to raise money for lung cancer. It is the first corporation I know of to begin backing such a campaign. As awareness is raised, there will be more money for research. But, there will also be more lives saved because the image of the old smoker with lung cancer will be replaced by the young vital nonsmoker with lung cancer. People will begin to realize that they are not immune to it just because they never smoked. And then we will have real progress. It is a day I hope I live to see and I have developed a passion for doing what I can to help that day come sooner rather than later.

Won’t you help me?

I just came across another article that I want to share here. It was written by Jamie Gorenberg who wrote for “Desperate Housewives” after her mom, a person who quit smoking 40 years earlier, was diagnosed with lung cancer. I want to share it with anyone who happens to read my blog because she says, more eloquently than I, how it feels to have someone you love diagnosed with lung cancer.

http://www.standup2cancer.org/article_archive/view/lung_cancer_coming_soon_to_a_non_smoker_near_you

 

Gotta Love Good News and Awesome Doctors!

Here I am … waiting on my treatment drugs to be prepared. For those who don’t know,  it takes about an hour, barring no problems,  for the pharmacy to prepare the drugs. For my treatments,  it also takes an hour to drip.

So, here’s the process:

  1. arrive at the hospital, preferably 15 minutes or so before 1st appointment. The first appointment is for blood draw. This is where my port is accessed and three or 4 vials of blood are drawn. 
  2. Go back to the waiting room for 45 minutes or an hour. During this time, the lab analyzes the blood. 
  3. Go in to see the doctor. This visit usually doesn’t last too long because I am fortunate enough to always have perfect blood test results. This is also when vitals are taken: blood pressure (like a teenager’s), oxygen (97 up to 100), temperature  (97 to 98), weight (way too high).
  4. After seeing the doctor, we return to the waiting room until we are called for the infusion. 
  5. We are set up in a room, saline drip is started, we wait on the pharmacy to get my drugs ready, and we play some more on our electronics. 
  6. Finally, the drug is ready and the count-down begins. One more hour before we get to go home!
I told my husband today that i am tired of coming to get treatments every 2 weeks. He understood.  I feel like it takes too much of my time. Then, i have to remember,  without this treatment,  i would likely not still be alive. So this day we give every two weeks is like dues. The price I pay to be alive. Small price to pay. Never mind my poor attitude.

Good News

So, i had another CT scan on Monday. With the trial i am on, CT scans have to be done every six weeks. Way more often than i would like. But, at least i don’t have to worry about how i am doing. Some people wait three to six months between scans, even when they are in active treatment. 
There is something called scanxiety. It is the fear cancer patients have about the results of their scans. I never have had it. Not even when i was getting regular chemo and didn’t get so many scans. I am not a worrier. God has control. When He is ready to take me home, my scans will go south. Until then, i expect they will be fine.
Which brings me to … my scans remain fabulous. Dr. Gerber said he wouldn’t pretend everyone has such good results, because they don’t. But, for me, immunotherapy has been, quite literally,  a Godsend.  My tumors don’t go away, unfortunately, but they have neither grown nor spread since the first treatment i had back in July 2013. Before i started on this clinical trial,  i was given very little hope.

Fabulous Doctor

I love my doctor! I am so very fortunate.  Dr. Gerber is the best! I really loved the oncologist i had before, too, though my memories are growing dimmer as time passes on since i last saw him. And, my PCP … oh my gosh … i can’t even say enough good about her. Like i said, i am one extremely lucky lady.
I love UTSW. The entire facility. Based on my personal experiences,  every member of the staff, from the ladies who check us in, to the aides who bring us to our rooms, to the nurses, to the doctors is excellent. Upbeat. Smiling. Friendly. Fabulous. (Anyone have a thesaurus? I think i need a different word … i keep using this one)
Anyway, back to today’s story… 
We go in to see the doctor. He calls me a superstar. It’s because my scans were so good again (the only way they would be better is if the tumors would go away. There are some radiologists who do believe the tumors are only scars, but we don’t know. I personally tend to agree. I don’t feel sick or look sick or act sick…) I know an oncologist loves having a patient like me. I am all but healthy. I am hope.
My wonderful,  personable doctor asks me about my dogs. Anyone who knows me knows how important my dogs are to me. Dr. Gerber is a very busy doctor, but he has taken time to watch and enjoy my agility videos. And, today, he proudly told us about his new dog! He has rescued a 6 year Australian shepherd and he is very obviously quite taken by his Maggie! It was so much fun listening to him telling us how smart she is and what a good catcher she is! 
It leaves me feeling happy and fulfilled to have medical personnel with whom we can chat. Not just about health, but about other interests as well. It sure makes these every 2 week visits a lot more palatable!

Angel doctor

Robert went for a physical yesterday. He saw the doctor who first discovered my cancer, Dr. Donna Casey. I went along, partly because i wanted to hear what was said about his health and partly because I wanted to see Dr Casey again. The last time i had seen her, i had just been told i needed to get into a clinical trial because traditional treatments were not working any longer. That was in July 2013.

I worried a bit about whether she would remember me or not. It had been over a year and a half since i had seen her. I count her my angel doctor,  but she sees many, many patients every week. There was not as much incentive for her to remember me as for me to remember her. I will never forget her! And will forever be in her debt!

Dr. Casey walked into the room, spoke to Robert, and then turned to introduce herself to me. When she saw who was sitting there, she broke into such a big smile. She was so excited. “I know YOU,” she exclaimed.

She started asking a volley of questions and then remembered that Robert was the patient this time, not me. She asked him if he cares if she spent just a few minutes catching up with me before getting to business with him.

While we discussed my treatments and how well they were going,  she had to reach for a tissue. She was so overwhelmed with joy that big alligator tears had formed in her eyes. She kept assuring us that she was crying happy tears.  Of that, there was no doubt.

I have always requested for her to receive copies of my CT scans, which happen every six weeks. I often wondered if she (or her office staff) considered them irrelevant. it is a lot of paperwork to keep up with for a patient you rarely see. I was shocked and humbled when she said she reads every report.  From her conversation,  it was apparent that she does!

All of this might not be so hard to believe if Dr. Casey had treated me for years prior to her discovering the knot on my collarbone that set the whole fight against stage IV cancer in motion. But, that isn’t the case at all. She discovered that knot on my very first visit.

Immediately,  she scheduled me for CT scans … that day. I heard from her just a few days later, with the information that there could be a problem and that her office was going to work with my insurance company to verify that they would pay for a PET scan.

I felt great. I went to see Dr. Casey at the very end of October 2012 primarily because i hadn’t been to the doctor for about 10 years for a physical. The main thing that drove me was weight gain. I kept packing on pounds and couldn’t lose them after going through  menopause and quitting smoking at about the same time. I assumed i had thyroid issues. I never, ever dreamt that i had cancer issues!

I had never heard of a PET scan so i immediately got on Google to see exactly what kind of scan it was. That was my first hint that i might have some kind of cancer. PET scans are used to diagnose cancer cell activity, heart disease, and dementia. I was confident i didn’t have problems with the latter two.

Dr. Casey’s office made the appointment for the PET scan as soon as approval for the test was received. She is amazing in her ability to get things done, so we didn’t have to wait long for the appointment.

By now, i surmised i had some kind of cancer. Since i had watched my dad die very quickly from lung cancer, i was praying it was any kind but lung cancer.

The only time we ever had to wait for what seemed like a lot of time to get a response from Dr. Casey was to hear what the results of the PET scan were. It took a week or so before we got the call that I had cancer … lung cancer. It was a call she hated to make, but she had already done everything for me. We had an appointment with an oncologist the very next morning.

Dr. Casey asked us to come by her office to report after the visit to the oncologist, Dr. Lalan Wilfong. He reported that the cancer was extensive. Because of its location, it was inoperable and radiation wasn’t an option either. Chemo was my only hope. He ordered a biopsy so we would know exactly what kind of lung cancer we were fighting.

By this point in time, we were nearing the Thanksgiving holidays. The date for the biopsy was set for after the holidays. Dr. Casey asked usmif we couldn’t have the biopsy done that day, rather than waiting. “Well, sure, but can we get in to have it done?” It was already nearing noon and, if memory serves me, it was Wednesday before Thanksgiving.

The amazing Dr. Casey pulled her magic strings and in just a few minutes,  we were headed to Presbyterian Hospital to get a biopsy. There was never a moment to sit and worry. She was about action and we were so grateful.

Because she made things happen so quickly, it was only barely over a month between the time i had my first appointment with Dr. Casey and when i was in the chemo room getting my first chemo treatment on December 5, 2012.

By May or June 2013, i had reached the end of the road for traditional chemo. The tumors responded as long as the poison was infused into my veins. But, as soon as treatments ended, the tumors took off again. Dr. Wilfong told us that there was another chemo drug we could try , but he wasn’t optimistic about it. It didn’t work as well and it made patients sicker than the previous drugs i had received.  The idea didn’t appeal to me at all.

He recommended that i consider getting into a clinical trial at the Mary Crowley  Center. I had never heard of that organization, but was willing to see what it offered. However,  i was really hoping to go to UTSW. I had heard good things about them.

When Mary Crowley was not at all responsive, we went back to see my angel doctor, Dr. Casey. We told her what was going on (or not) with Mary Crowley and asked what she thought about us going to UTSW. In minutes, she had called Dr. David Gerber and set us up an appointment.

The rest is history. I signed up to participate in an immunotherapy trial. My first treatment was in July 2013. The results have been awesome. I am the only patient still on the trial, at least at UTSW, but it is working great for me. My tumors have sat stable since i started the trial. Sometimes,  the radiologist classifies them as scars, though Dr Gerber scoffs at that. He said there’s no way to tell from a CT scan.

As long as they sit dormant,  i am okay with them being there. I wish they would go away entirely,  but this is the next best thing!

And, for all of this, i owe Dr. Donna Casey. She is my angel, if ever there was one!

Blessings

You have to look for your blessings where you can … and I know you guys will think I am weird, but this lung cancer made it possible for me to retire. I can’t even tell you how wonderful it is not to have to go to work any longer. I have had to work one or two jobs since I turned 20. I am loving every second of not having to do that any longer!

Another HUGE blessing is that the treatment I am on (clinical trial for immunotherapy drug) is wonderful. Here I am … Stage IV non-small-cell lung cancer patient … nearly 1-1/2 years after diagnosis … still doing fantastic!!! The tumors are still there, but they are just sitting in the same spot as they were when we discovered them. They haven’t grown or multiplied or spread. Hallelujah and Praise God!

The immunotherapy is the best thing since sliced bread. It doesn’t make you sick or tired and before I started getting it I was sick and tired of being sick and tired!! The hardest part of getting it is spending a long half day at the hospital getting an infusion every two weeks. Lucky me and lucky cancer patients everywhere … the company is or will soon be seeking FDA approval. From what I know, none of the patients who are participating at the clinic where I go has had terribly adverse side effects and I think everyone is doing quite well in the fight against their cancer.

I am so glad that I found UT Southwestern. Some people told me that they felt like it was a huge and cold institution that didn’t care about patients except as numbers in science experiments. Well, that’s far from true. The girls behind the desk know you, the aides who take you from place to place know you, the nurses, physician’s assistants, researchers, and doctors all know you as a person. I always feel like I am seeing friends when I go. Which is a good thing since treatments occur every two weeks.

My life is so full. Every single day is packed with things that I love to do. In the past, my days were full, but they were full of work-type activities. I worked at my 8-5 job and then I came home and took care of SchoolGrants, the business that God blessed me with since 1999. I let it go a couple of years ago and that was quite a liberating feeling! It still is. It was my passion for a long, long time but I burned myself completely out.

Once you receive a cancer diagnosis, I don’t think the fact that you have cancer (or had cancer if you are fortunate enough to beat it) ever leaves your mind. I never go through a day that I do not remember quite well that I have cancer. It impacts my thought processes. On the other hand, some days I can’t believe the diagnosis is correct. How can I be so sick when I’m so healthy??!!!

Which brings to mind more praises! Week after week, month after month, my blood tests come back perfect. We do thorough blood analyses before every single treatment and every time, my tests are perfect. My doctor is amazed. He said that less than 1% of cancer patients are as fortunate. It isn’t just my blood tests that come back perfect, so do my blood pressure, oxygen, and temperature readings! How can I not call myself lucky? LUCKY!! or, more appropriately, BLESSED. Totally.

Here’s another way I am blessed. Insurance. Oh my gosh. Fighting cancer is expensive. Ridiculously so. What do people who don’t have insurance do? I really don’t know. I’m glad I don’t have to find out.

I have been on some cancer sites lately that are sort of like support groups or something. I have never felt the need for a support group but I like to go to these online groups and offer support to those just learning they have cancer. I want them to know that a horrible diagnosis that scares the living daylights out of you may truly not be the end of the world at all.

Those people who get the diagnosis and decide right away that they’ll just go with palliative care distress me. No one thought I had a lot of time left but I was determined to make the best of what time I did have. My life has slowly evolved to something that it wasn’t when I was diagnosed. For instance, I do not participate in all of the same events, like agility training and competing, that I was consumed with prior to learning I was battling lung cancer. But my life is full. Every single minute of it! I am as happy as can be. Each day ends with me thinking that I needed more hours to get everything done that I wanted to get done that day. Amazing.

Those who just give up are missing out on so much. None of us have tomorrow promised to us, so we should all appreciate each and every hour that we are given. I just wish that those who choose not to fight their cancer would reconsider. At least I wish they would try to get into a test study so that the doctors can research the effects of more treatments. It might or might not help them but it surely might help someone else down the road. I’ve never been a hand-wringer. I don’t guess I understand  those who are.

Well, I planned to post a lot of pictures here and discuss some of my recent activities, but I’m really beat. Today was treatment day and it was a long day. I’ll come back before too long and post some lovely pictures I’ve had the opportunity to capture over the last few weeks and months.

Until then, take care and thank God for another day!

I’ll leave you with two of my most favorite blessings:

My lovely Cotton. She’s doing some birdwatching here. I’ll be posting pictures from our bird watching in the near future.

Barney. My heart and soul. 

Faces of Cancer

I started writing this article yesterday while I was in the waiting room at the Seay building at UT Southwestern. I guess I lost Internet before it was saved so I lost it all 🙁 I’m really sad about it because I felt “inspired” while writing it and think it was good (and no one can ever dispute that since it is gone, gone, gone!).

I am going to attempt to reconstruct what I wrote, what I was feeling when I wrote it. Wish my memory was not horrible! That’s a BAD sad effect of having chemo (or maybe of getting old or maybe both) – no memory. At all. Thoughts rush into my mind and leave before I can grab hold of them!!

Going to a cancer center is eye-opening. They are all full. When I go to Texas Oncology at Presbyterian Hospital, the waiting room, the infusion room, and the hallway where you wait for labs are all full of people. When I go to the Seay building of UT Southwestern, there are even more people everywhere you look. So many lives struck by cancer.

Full waiting room. Too much cancer!

Yesterday – Monday – we had a hard time finding a place to sit even though there are two different large waiting rooms to choose between. My picture doesn’t reflect how very crowded it was, but it is the only picture I tried to take of the waiting room … It’s a little blurry but I decided that’s okay because I am not trying to identify anybody who was sitting in there … just to record the crowd…

If you are not personally affected by having the disease yourself, you know someone – usually a friend or family member – who has battled some kind of cancer at some point in their lives. My dad died of cancer at age 49. My beloved stepfather, Bob Massie, was eaten up with cancer and passed away just five years after he and Mom married. My maternal aunt died from cancer and my paternal uncle did, too.

Over the last few years, Robert and I lost two great friends to cancer – Mike Schoolfield and Richard McCann died about a year apart. Another good friend, Steve Massengale, was given only weeks to live after cancer that had eaten him up was discovered. His is a success story!!! He has been a survivor for at least 10 years!! The more I think, the more friends and family I think of who have suffered from cancer. Some fall victim and some beat it … but they and their families have been touched by it.

And, for every person who receives that awful diagnosis themselves, there are family and friends who love them whose lives also change immediately and forever. It is an insidious disease for sure.

In the relatively small department where I work, Janice’s husband has had lymphoma. He is currently in remission, praise God!, but has developed multiple myeloma – the disease Robin Roberts from Good Morning America chronicled as she has battled it. The brother-in-law of my friend Cindy is battling leukemia. They had it under control for a few months, but it has returned now. The grandmother of another coworker has been fighting cancer for months, surprising the doctors who thought she would die within only weeks of diagnosis. My former boss was diagnosed with Stage 1 breast cancer only months after I received my diagnosis. Cancer is just everywhere. Everywhere.

I just read recently that David Phelps’ sister passed away last year. David is the unbelievable tenor who often sings with the Bill Gaither Vocal Band. His sister frequently sang backup for David when he was on the road doing concerts. You would never have realized it by looking at her or watching her, but she was fighting liver and back cancer that ultimately took her life. She was only 49. She had so much life left to live, but cancer cut it short. For some reason, that broke my heart. She always had a big smile and seemed so full of life. Gone…………..

It doesn’t matter how much money you have. How old you are. What your name is or what your parentage is. What color you are. Cancer does not discriminate.

These melancholy thoughts were in my mind when I saw the following in one of the waiting rooms yesterday:

This young mom and her daughter were both messing with the doll the mom is holding. Mom was braiding the doll’s hair, using great care to do a good job of it. I wish I had had my good camera and the nerve to ask if I could take a picture or a series of pictures of the two of them. Mom, with her mask and bald head from chemo. Daughter with her smiles and happy countenance. For some reason, the two of them represent The Face of Cancer to me. There is a lot of sadness in this picture but also hope. Neither Mom nor daughter appears to be giving in to the disease.

On the other hand, I am struck by one more thing when I observe the people in these cancer centers. Nearly everyone has a very pleasant attitude. I hear polite, happy people speaking. I rarely see anyone who doesn’t smile – even when they look like cancer has really ravaged them. Very few appear to have given in to the disease. I do believe that you will see more happy and contented people in the cancer centers than you will at nearly anywhere else. I sometimes pat myself on the back for having a good attitude about being sick, but truthfully, it is more common than not for cancer patients to have a positive outlook on life.

At the same time as I saw the mom and young daughter above, there was another man and his family or friends sitting there. Lots of hospital staff came up to the man to speak and kid around with him. He is obviously a favorite. Based on his appearance, I have to wonder how much longer he has on this earth. His head was not bald like the mom’s is but you could tell that chemo had done its work on his hair. He was skinny … REAL skinny. Sick skinny. But, his smile was bright and cheerful. He also represents the Face of Cancer to me. I wish I had gotten a picture of him.

I decided that I would try to get more pictures of people in the waiting rooms when I go. So many stories. So many heartbreaks. And, at the same time, so much joy! The faces of cancer. They are you. They are me. Everyone is impacted by this insidious disease in one way or another – everyone.

Got the Chemo Port

Robert and I were at UT Southwestern for a long time yesterday. We had to arrive at their St. Paul Hospital by 7 AM so that I could get a port inserted. The chemo and constant pokes and pricks required from frequent blood tests, CT scans, and treatments finally wore my veins out, making the device necessary. Everyone says I will be really happy to have the port.

It was a frustrating morning. We rushed to get there by 7 … it is an hour away from home so we had to leave really early! We waited for 45 minutes to get registered at the hospital. Great! There was only one girl working registration for the entire hospital on a Monday morning. To her credit, she was ultra-patient. I just don’t understand why she didn’t have a whole lot more help. We were behind two people and when we left, there were two or three more waiting. Plus, people kept coming in from the “street” and asking questions, etc. that the girl also had to answer. Because I hate to be late to appointments, I was getting really anxious … and another “a” word … angry!

Once we finally got up to the floor where the little minor day surgery would occur, things started happening. I got an IV so they could give me some medicine to “relax” me during the procedure. Blood was drawn, vitals taken (my blood pressure was lower than it has been in a long, long time … go figure??!!!).

Next, the physician’s assistant came in and introduced herself. The surgeon didn’t insert the port. The PA did. Hmmmm. Hope my insurance wasn’t charged for a surgeon.

The clock was inching toward my 9:00 surgery time and I was anxious to get it over with. But, while things popped when we first arrived, they suddenly slowed to a turtle’s pace. We saw NO ONE from about 8:45 until not 9, not 9:30, not 10!!!!

I already told you how anxious/excited/angry I get when things don’t go like they are scheduled!! I was getting pretty upset because the surgery was going to take an hour and then I had to recuperate for an hour before being released. Well … I was supposed to be over at the Seay building by 1 for my labs, doctor appointment, and treatment. And, we planned to go eat breakfast before we went there since we are usually there for 7 or more hours and I wasn’t able to eat or drink anything from midnight the night before the surgery. I was seeing all of our plans going by the wayside and I was restless and unhappy about it!!!

Finally, at about 10:30, someone came to get me to take me to the operating room. Let me tell you, he was no driver!!! He bumped me into every possible wall from leaving my room until we got to our destination. He said he was going to knock the mean out of me!! (I’m afraid it didn’t work!)

Truly, while I was getting upset, I don’t think most knew it (Robert did). One of the technicians in the operating room – a really sweet English girl with a great accent – mentioned that she heard someone who was jolly was on their way in. Jolly … haven’t heard that word in a long while but appreciated having it used to describe me because I do try to be positive and yes, even jolly, most of the time!

Anyway, while things didn’t go along on the timetable I wanted, the port was inserted (I keep wanting to say “installed!”) with no problems. The medicine they gave me to relax apparently put me all the way to sleep – I was out of it during the actual procedure despite my intent to stay awake so I could write about it!

I got Robert to take some pictures of what it looked like after the surgery. You can see how bruised things already were around the incisions, etc. …

Today, I am sore from the incisions made to insert it. On the other hand, I am enjoying a day at home relaxing – no bath and no driving for 24-48 hours so no work for me!

I tried driving last night when Robert and I went to Subway to grab some dinner. Yeah … I found out why I wasn’t supposed to be driving. The port is installed on my right side. Turning my head to look left or behind me … ouch!!! Nearly impossible at this point!

I’ll post picture of what it all looks like when I can take the bandages off tomorrow. I can’t wait for that!!! The tape is driving me crazy … maybe more than the incisions!!! 🙂

Months Later…

Surprises

If you had told me in October 2012 that I would still be here and feeling pretty darn good in August 2013, I would have thought you were very optimistic. Facts back up my pessimism. Less than 50% of all Stage 4 lung cancer patients live for one year after diagnosis. I realize I haven’t actually made it a year yet … I have to make it to the end of October for that … but God willing, that is going to happen.

Entertaining myself during Chemo

This picture was taken at UT Southwestern where I was receiving a test drug as part of the research study I am in. It marks the last time I will have an infusion through a vein in my arm (or hand, as the case may be). Tomorrow, I go in for a port. No food or water after midnight. Arrive at St Paul Hospital by 7. St. Paul is an hour away! We’ll be getting up and getting with it early!!

As you can tell by the picture, I don’t look particularly sick except for the tubes coming out of my arm. It is because I am NOT very sick. My blood tests continue to be nearly perfect. My organs are holding up beautifully. I haven’t lost weight (not necessarily a good thing in my mind but most people find that a positive). Despite receiving chemo for six treatments of a 3-chemical cocktail and six more of one chemical, I didn’t lose my hair. It did get really ugly though so I had just had it all cut off not too long before the picture above was taken.

What’s It Been Like?

Once you receive a cancer diagnosis, I don’t think it can ever be forgotten or even pushed very far back from the forefront of thoughts. The fact that I have stage 4 lung cancer – the deadliest of all cancers – with only 15% of all those diagnosed, including those diagnosed at an early stage – living for five years – controls nearly everything I do. For instance, vegetables are not my favorite dish but I try hard to eat dark green vegetables every chance I get (realizing, of course, that we eat out most every meal). When we eat at a buffet, I will frequently choose to eat fish. I drink vegetable and/or tomato juice by the gallons. I try to stay away from carbonated drinks and, despite craving on occasion a mixed drink, I have refrained from imbibing. All in the interest of a healthier lifestyle.

Likewise, you will find me walking my dogs every morning. They are such a blessing. If I didn’t have them, I know I would not make myself get up and out. Not only do we walk, we also go to agility practice most Saturday mornings – even now in the hot August Texas summer heat. Last week, between the two dogs, I ran 6 or 8 complete courses. I have to sit down between runs and catch my breath, but I can still run! Thank you, Jesus!!! I am blessed.

For the first few months, I refused to buy anything for myself. I didn’t want to spend any money on someone who was short for this earth. I finally broke down and purchased several pairs of slacks and lots of little summer tops (admittedly, the tops have all come from Walmart or Sam’s, but still!). I’ve signed up for magazines that have subscriptions that run for a year. I’ve signed up for dog trials and photography classes.

On the other hand, I have thoroughly enjoyed listening for hours to the Gaither Vocal Band. Some of their videos make you happy; make you want to clap and sing along with them. I looked into going to a concert of theirs. There is a 3-day event in Tennessee over Memorial Day 2014 that sounds like a ton of fun. Tickets would amount to several hundred dollars. I have chosen not to invest despite the fact that really good seats are still available.

I’d really love to have a new car, too. But, I don’t want to purchase something long term that Robert might be stuck paying for without me here to help.

So, short term, there are not huge changes in my life. I can’t go to as many agility practices or trials because of stamina, desire not to spend excessive amounts of money, and a growing lack of interest. But, I have developed new interests that take a little less stamina (maybe), such as photography. Why can’t I ever find a cheap hobby??!!

I have more to say, but it is getting late and I have to get moving early in the morning. I’ll try to revisit here a whole lot sooner than I have been so far!