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!

Still Living with Cancer!

I haven't updated my blog in a long time. How does that help provide hope? It doesn't  ... so here i am, hopefully able to provide hope to any of you who have been diagnosed with lung cancer or who have loved ones who have been diagnosed.

I was first diagnosed in October 2012. I have passed the critical one year milestone and will see the 3 year mark, God willing, in just a few more months. Trust me, i thank my Lord every single day for my life. So very many don't make it even a Year.

I love being alive and on this earth. Here to enjoy my family, friends, and dogs. But, God is good whether He decides to leave me here on earth or bring me home to Him. Talk about a win-win situation! i just can't lose!

While i am here, i try hard to live every day to the fullest. Fortunately,  i feel good, thanks to the immunotherapy i receive every two weeks. Barring bad news from the CT scans i had today, my tumors have remained stable since i began my immunotherapy clinical trial in 7/2013. Praise God!

So, what does living look like For this stage IV lung cancer survivor?

Dogs, dogs, dogs!

My dogs continue to dominate my life. They bring me such joy and give me so many reasons to want to live.

It is funny to post a snow picture since it is nearly 80 outside on this late March day. But, those two lovers of life get such joy out of the very limited snow we get here in Texas. Cotton also gets great joy in rolling in coyote poop. You can see how nicely she decorated herself in this picture!

The dogs and i meet our friends Linda and Louie (her precious Pom/Eskie mix) nearly every day to walk. We used to walk at least 3 miles every day. Lately,  we have cut that down to around two miles because we come back to a field to practice obedience/agility skills. 

Linda and I are fortunate enough to be taking agility lessons with Ed Scharringhausen at Run As One Agility. I have taken lots of classes over the last 6 years. Our classes with Ed make all others pale in comparison. We practice the skills he teaches us all week so that our dogs will be ready to move on when we return to class.

We also take classes with Pam White. Like Ed, she will analyze our runs from trials and is working hard with us to teach us distance and obedience skills. We are so fortunate to have two teachers who put so much into us and our dogs.

So, what's this agility about which I speak so fondly?

This is Barney and me running a jumpers agility course. The handler directs their dog around a numbered course. Speed and accuracy are required.

Here is another run from the March 2015 Run As One trial:

Here, the dog must navigate a number of different obstacles. Barney and I LOVE to play agility.  As you can see, it takes a great deal of energy. 

I have not been able to participate in lessons or trials like i did before i was diagnosed. My stamina is not as good and my pocketbook is much slimmer than it was. However, with the current 2 classes a week and, hopefully,  at least a trial a month, we are coming back!

Cotton doesn't play agility as much. She's an awesome agility dog, but she doesn't always care to participate. Like all sports, it is somewhat expensive. Since my funds are now so limited, i mostly train and trial with Barney, my boy who loves to please and loves to play agility.

As you watch the videos, remember it is a stage IV lung cancer survivor running those courses. Awesome, huh?

Just for fun, i will post a video of Cotton from the December  2014 trial. First, you will see Barney run the course as designed and then you will see Cotton. 

Hmmm, the formatting just went south... 

Here we go! Formatting restored!

Other Interests

My favorite thing to do is spend time with my dogs and friends who also love dogs. But, especially as the weather warms, i also enjoy container gadening, watching the birds, and photography. 

For the first time, i am trying herb gardening. I love my 3-tiered pot. Just bought two more from Amazon ... one for mom and another for me. I am going to put some tomatoes and strawberries in the new pot. Not sure what else... i can't wait to see how it goes! Fresh tomatoes and strawberries sounds heavenly though, huh?

I haven't taken many pictures lately nor have i had time to really spend watching my birds. Soon, the hummers will be back ... can't wait!! Will have to find some time to enjoy these activities. 

It is also nearly bluebonnet time here in Texas. I LOVE the bluebonnets. I combine 3 loves during the month or so they are out: my dogs, flowers, and photography!  Here's an example from last year:

Well, Robert is hungry. I need to end this and get him something to eat. 

Here's my final thought : if you have been diagnosed with lung cancer, even late stage lung cancer, do not give up! There is still life to be had. Grab it with gusto!

New Stats released by CDC

http://www.cancer.org/research/cancerfactsstatistics/survivor-facts-figures

The CDC just released its latest statistics for cancer survivors.  A survivor is anyone who has been diagnosed with cancer and is still alive. They may or may not still be undergoing treatments. They may have lived 20 years since diagnosis or 20 minutes.

The news in the report is actually quite good for many cancer survivors. It seems research has finally gotten a handle on lots of cancers and, while it is a huge inconvenience to be told you have cancer (understatement?!), your chances of surviving for at least five years are remarkably good.

For instance,  prostate cancer is the most frequently diagnosed cancer. Over 233,000 men were told they had prostate cancer in 2014. Fortunately,  99% of them will be alive in five years. Caution: 1% don't make it. Don't wait around! One of our best friends died of prostate cancer and it wasn't pretty.

The next most common cancer is breast cancer. Pink anyone? (Is anyone else as tired of the pink campaign as i am??) In 2014, 232,670 men and women (but mostly women) learned they had breast cancer. Probably in large part because of all of the awareness campaigns and money thrown at research, 89% of breast cancer survivors will live five years or more.

The news goes south quickly from there. The third most common cancer is lung cancer. A whopping 224,210 people were told they have lung cancer in 2014. The majority won't live a year. Only 17% will live to see that magical five year mark. And yet, funding for research into curing this cancer remains dismal.

There is that awful stigma that accompanies a lung cancer diagnosis. It is the smokers' disease. And, i guess people who smoke or ever smoked deserve to die. And, i guess the thousands who never smoked but get lung cancer deserve it too. i presume this is true because there is so little support for finding cures. I am fighting to change that. So is LUNGevity (lungevity.org).

There are two cancers more deadly than lung cancer. Fortunately, they are not as prevalent. Only 6% of the 46,420 people diagnosed with pancreatic cancer will live 5 years. Liver cancer affected 33,190 in 2014. Only 16% of those people will be alive in 5 years.

These stats are dismal. It is up to us to fight for change. The more of us who lift up our voices, the better. Look at what awareness campaigns have done for breast cancer. It is time to spread the wealth. Other cancers are far more deadly and those diagnosed with them deserve to have hope and the chance to live for 5 or more years.

Please help! If you can't contribute,  you can still communicate the need to Congress and contributors.

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!

how will you be remembered?

This was posted to WhatNext.com.  i may decide to answer some or all of the questions, possibly  here on my blog. In the meantime,  i want the questions here where i can them again!

How will you be remembered?

I shared with some of you a list of questions my granddaughter emailed to me. You may want to consider answering some of them for your family: 
1. How did your parents meet? 
2. What has been your favorite thing about being a daughter, sister, wife, mother, and grandmother? What was your least favorite thing? 
3. What are you most proud of? 
4. Do you have any regrets? 
5. What are you most scared of? 
6. What's your favorite song and movie? 
7. What advice do you have for me about life in general? 
8. Who is someone in heaven you wish you could have lunch with? 
9. What's the most romantic thing papa ever did for you? 
10. What was the hardest thing about marriage? 
11. What do you think of when you see a sunset or the ocean? 
12. Do you ever miss living in Michigan? 
13. What's your favorite place that you traveled to? 
14. What is your best memory from your childhood? 
15. What's your greatest wish? 
16. What’s your favorite quote and why? 
17. Who is your favorite person and why?

Living with Lung Cancer

I will never forget learning i had lung cancer or the reaction of my primary care doctor. She felt just horrible that she discovered i had stage IV lung cancer on my very first visit to see her. I have the complete opposite reaction. I praise God for her every day. I would be dead today if she had not noticed that tiny knot on my collarbone.

Dr. Casey held our hands tightly through those early days of battling the cancer. She requested that we come to report to her after every visit with the oncologist. I remember like yesterday sitting in her office and relaying what Dr Wilfong, my first oncologist, had told us. She asked if Robert and/or I needed sleeping pills or anti-depressants and was amazed when we said no. Not then, not ever have we felt the need for drugs to help us face the diagnosis.

From the beginning, we have accepted the diagnosis, gone for treatments,  and continued on with life. Thankfully, my general good health has allowed us to live pretty normal lives most of the time.

I was at my oncologist's office yesterday. With every treatment,  i have blood tests, a doctor's visit, and the immunotherapy infusion. I have had a cough since around Thanksgiving which is driving Robert and me crazy. It was preceded by an unexplained (despite a multitude of tests) fever. Anyway, Dr Gerber was wanting to know how significant the cough is and how affected by it I am.

I told him it didn't prevent my playing agility all of last weekend. He wasn't quite sure what i was talking about so i showed him the following videos.

My dogs and i love the sport of agility so much! I am sure it is apparent from the videos. How many Stage IV lung cancer patients are out running agility courses? I don't know, but i am beyond thankful that i am able.

Additionally, the dogs and i meet my friend Linda Lelak nearly every day and walk from 2 to 3 miles. The dogs love it and it is good for us! I am grateful for Linda and her Louie. If not for meeting them every day, i probably wouldn't make myself walk on a regular basis.

I meet my friend Anna every week for lunch and, if there's anything worth watching, a movie. I love having friends and the time to get together! I spent nearly my whole life so involved with working that i didn't take time for friends.

The whole purpose of this post is to point out that a cancer diagnosis doesn't mean that you have to quit living. I know through a support network that i particpate on that too many people become captives to their disease and their fears of germs.

If i let it make me a prisoner, then i might as well just give up and let it take its course. I have cancer. Cancer doesn't have me.

Two-Year Anniversary

Two years ago, accompanied by my mom and my husband, I arrived at Texas Oncology at Presbyterian Hospital  (currently of ebola fame) to begin chemo treatments. I wore my agility shirt that said, "It's about the journey. " I had no idea what to expect, but one thing I did know was that I was beginning the journey of and for my life.

I will be honest. I didn't expect to live a year, much less two years from the start of chemo. I watched my dad die in 6 months after being diagnosed with lung cancer. Stats said I wasn't likely to live. I planned to face the end of my life with laughter, humor, dignity ... but I fully expected to lose the battle within a year of diagnosis.

Instead, Praise God!, today, two years after my first chemo treatment, my Sheltie Barney and I were at agility lessons, preparing to compete at the December  Run as One trial in Terrell on December 13-14. Could life be any better?