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. 

Surviving Lung Cancer

I recently had the rather odd opportunity to participate in a market research study that was directed at stage III and IV lung cancer patients. In all, the company was trying to find 9 of us to help them develop a marketing campaign for a new immunotherapy drug that will be coming out. There were three time slots and three people were needed for each time slot. We were paid $200 to participate. If our names were provided to the market research company, the referee received $100. I can only imagine how difficult it must be to locate stage III or IV lung cancer patients; especially patients who are willing and able to participate in the study.

I wasn’t really sure if I wanted to do it either. Sometimes I don’t mind talking and answering questions and sometimes I do. I woke up not sure I wanted to talk about lung cancer or my thoughts about it.

But, since I had agreed to participate, I got ready and made the trip into Dallas. Finally talked myself into trying out LBJ Freeway which has been under construction for the last several years. Wow! It is nice! 🙂

I was very curious to see who the other two participants would be. Would they be sickly? How long had they been sick? I felt certain that I would look far healthier and feel far better than my colleagues. In fact, I was a little smug in my belief that I am doing so much better than most would be a year after being diagnosed with Stage IV lung cancer.

I arrived first. Next, a nice looking lady about my age came in. She sat next to me and we had a wonderful time. She didn’t look unhealthy either. And despite her saying that she is depressed and worries constantly about her diagnosis, she had a fabulous sense of humor. I believe she had been diagnosed about 7 months previously. Her cancer was different than mine and she was able to have a lung removed. Nevertheless, she is currently undergoing chemo that is making her really sick. Ugh. I know the feeling. I referred her to UTSW. Maybe they can get her into a study with a drug like mine that doesn’t make you sick. I hope so.

The last person to arrive was  Lydia. She looked a little worse – she wore a hat, perhaps because she has no hair and perhaps because she prefers a hat. I’m not certain. Looking at her, I assumed she had had the cancer the least amount of time and that she was suffering the most. Wrong. As it turns out, she has been battling the disease for five years. Tumors have popped up all over her body. And the doctors have managed to treat them and get rid of them. Lydia is on a maintenance drug and is doing quite well.

Interestingly, Lydia never smoked a day in her life. When she developed a dry cough, nobody tested her for lung cancer. It took months for a doctor to decide to rule out cancer … and find it instead. Makes you wonder if she’d have been better off if she had smoked previously. At least, if that was the case, the doctors would have nearly immediately tested for lung cancer.

The other lady had smoked, but she quit 23 years previous. Her lung cancer was discovered as a result of her having a skin cancer examined. For some reason, they decided to do a lung x-ray, too. Like me, she had no symptoms whatsoever.

I, too, smoked, but I had quit five or six years before my cancer was discovered. When I agreed to have a CT scan just to be sure I didn’t have cancer, I was certain that I would get a clean report. Wrong!

So … here are some lessons! Lung cancer doesn’t attack only smokers – current or former. It certainly increases the odds of getting it if you do smoke, but that is not a criteria.

Even though the cancer is spreading through your body and advancing to stage III or IV, it is entirely possible that you will have no symptoms at all. By the time you have symptoms, you may well be way too sickly to ever recover. Scary stuff!

The purpose of this blog, though, is not to scare anyone. Rather, it is my hope that it will be encouraging. The statistics say that only 41.2% of people diagnosed with lung cancer survive the first year. Only 26% survive the second year. Scary statistics.

But, of the three of us who were in that room, one has had the cancer for a little less than a year, but it seems likely she will still be living after a year. One of us has beat the odds for over 5 years. And I am well into the second year of my battle. A lung cancer diagnosis is scary, but it is not an automatic death sentence. That’s what I want people to understand and believe.

 

Facts and Statistics – Please Help Support Lung Cancer Research

Lung cancer has a stigma associated with it that most other cancers do not. It seems that people almost think that those who get lung cancer deserve it. The first questions you ask when you hear of that diagnosis are, “Do you smoke? Did you smoke? For how long and how much?” And, if ever in their life the person smoked, subconsciously you think, “Well, you should have known better. You should not have smoked and you would not be sick now.” Probably as a result of this thinking, fundraising for lung cancer lags far behind that of breast cancer and some other cancers.

Below are some facts and statistics about lung cancer. If you ever decide to donate toward cancer research, I hope you will consider earmarking your contribution to lung cancer.

 

  • Lung cancer (both small cell and non-small cell) is the second most common cancer in both men and women
  • Lung cancer accounts for about 14% of all new cancers
  • In 2013, there were 228,190 new cases of lung cancer (118,080 in men; 110,110 in women)
  • In 2013, there were an estimated 159,480 deaths from lung cancer; accounting for about 27% of all cancer deaths
  • Each year, more people die of lung cancer than of colon, breast, and prostate cancers combined
  • Overall, the chance that a man will develop lung cancer in his lifetime is about 1 in 13; for a woman, the risk is about 1 in 16
  • Only 15.6% of people diagnosed with lung cancer will still be alive five years after diagnosis.
http://www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-key-statistics
http://seer.cancer.gov/faststats/selections.php?#Output
 

A Year Later

I had chemo yesterday. Today I cleaned house … or started. It has really gotten terrible in the year since I was diagnosed with Stage 4 lung cancer. Even on weekends when I felt like cleaning, I was too busy. Getting that unreal news changed my way of doing things. I fill every spare moment with activity – fun activity!! Cleaning house does not qualify! 🙂

This was me a year ago (early January 2013):

I believe I had just had my second chemo treatment when this picture was taken. I was very, very sick. So sick that I sometimes wondered if “the cure” was worth it. It was because I would feel just awful for several days and then I would have two weeks or so where I felt pretty darn good (not overly energetic, but certainly good enough to be glad I was alive!).

While I was pushing the steam cleaner today for the first time since I learned I had cancer, I marveled at what a difference a year can make. Now, I have rarely let this disease really get the best of me, but how I feel today compared to how I felt when the picture above was taken has no similarity! Thank you, Jesus, for that!! Literally.

The following picture was taken of my little Barney dog and me at the Run as One agility trial last weekend. I had already participated in several runs (Cotton went with us on Sunday and she participated in two events; Barney in three … all five runs took place within a 4-hour time span) when it was taken.

A lot of people have no clue what I’m referencing when I talk about agility. The YouTube videos here were taken several months ago. I don’t have any videos from the last few trials. Nevertheless, these let you see what agility even is … and perhaps give you a new appreciation for the fact that I ran six runs on Saturday with Barney (and worked the ring throughout the day as well) and came back on Sunday for the five additional runs.

Anyway, if you had told me in January when that first photograph above was taken that I would be running in agility trials a year later, I would have humored you and said I hoped so, but I truly wouldn’t have actually believed it. I watched my dad die of lung cancer in only 6 months after diagnosis … a common fate for those with late-stage lung cancer. Why should mine be different?

I surely do not have the answer to WHY my fate has been different, but I praise God that it has been. It isn’t that I am afraid to die – I am not – and I sometimes even wonder why I don’t wish to rush it – Heaven is … well … Heaven!!! It is going to be so much better than life on earth. Nevertheless, I’m human and there’s lots of stuff I still want to do so I want the time for me to leave here and go on to my next life to wait awhile!

God is good. All the time! That is all.

Research Drugs

Wow! Time flies, doesn’t it? I had resolved to be more faithful to my blog … you never know if there might be a person out there who might be helped by getting to know someone else who is facing the same battle they are. But, months have passed and I haven’t written a word.

Today is treatment day again. I praise God on treatment days that this test drug does not make me sick. At all. Such a nice switch from the initial treatments I was given. I have been told the drug company that makes this test drug will soon be asking the FDA for approval. I hope they get it so that lots of cancer patients can be treated with it. I’m not sure if it is just for lung cancer or not, but it is wonderful :).

Which brings me to a subject that is somewhat confusing to me. I saw something recently that said that only 5% of cancer patients go into a research study. Why?

The traditional treatments I received had held the tumors at bay as long as I was getting them. But, as soon as we stopped them, the tumors began to grow again. And, because the treatments I had been getting were so harsh, we couldn’t continue that particular regimen.

So, I didn’t have a lot of options. I could have undergone a different chemo treatment that didn’t work very well and that would have made me even sicker than what I’d been getting did or I could try a research drug. I didn’t spend ANY time trying to decide which route was the right one for me. And, I have never, ever, not for one second, been sorry I decided to go with the research drug.

I’ve been getting the research drug since July. My blood work is still phenomenal. I haven’t lost a pound (though I wish I could lose about 40!!!). We eat before we start our long day at the hospital and we eat again when the day is done – no nausea!! Not right after the treatment and not later either. I am a bit more fatigued the day after a treatment than I am otherwise, but it isn’t significant. I have participated in agility trials on a Saturday after receiving treatments on the previous Thursday. That wouldn’t be happening if I was getting the old “tried and true” chemo drugs. I’d be spending most of my time being sick, I’m afraid.
My last CT scan could not detect the tumors in my lymph nodes in my neck. The tumors in my lungs are just sitting there – not growing, not spreading. 

I think it was one year ago today that I had my very first chemo treatment. None of us had much hope that I would still be here today, blogging away and still getting treatments. But, here I am and I feel great!!! Just last weekend, I took my Barney-dog to Waco for an agility trial. He and I ran in three events on Friday evening, six on Saturday, and another two on Sunday before we headed back home. We didn’t just run, we were competitive!!! Mr. Barney earned himself two elite titles and seven or eight qualifying scores – first or second place each time. Who would have thought?

God isn’t finished with me on this old earth … and even though I know that Heaven is a far better place than here … I’m really glad that He’s left me here for awhile! 🙂 I just hope that I’m adequately fulfilling whatever purpose He has for leaving me here.

Time to go!

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!