Have you ever considered participating in a clinical trial? If you haven’t, you are in the majority. In fact, according to Patient Advocate Foundation,“ less than 5 percent of adults diagnosed with cancer each year will get treated through enrollment in a clinical trial.”
I find this stat extremely sad for two reasons. The first is that without participants clinical trials cannot be conducted. If treatments cannot be tested in trials, they will never be approved by the FDA, so they will not be available to cancer patients. A study by Fred Hutchinson Cancer Research Center and the University of Washington found that nearly 20 percent of publicly funded clinical trials fail due to lack of participation.
originally published 10/6/2016
When we are diagnosed with lung cancer, it is almost always a shock. Whether it is caught early or late (the usual case), it is like a fist in the stomach to us – and everyone who loves us. It is important to put on your boxing gloves as soon as you can possibly recover from the shock and start fighting for yourself.
This was made all the more important to me just the other day. I was approached by someone in an online community who wanted to know about the treatment I receive. I have been in a clinical trial for nivolumab or Opdivo, an immunotherapy, for over two years now. Word is getting out about immunotherapy and the hope it offers many of us with late stage lung cancer.
This woman was 61, the mother of a seven-year-old and a six-year-old German shepherd. She had Stage IV lung cancer. She was given one infusion of chemotherapy, which made her very, very sick. Her oncologist told her she was not a candidate for chemo so she needed to just go home, get her affairs in order, and prepare to die.
When I met her online, she had rehomed her dog and was taking her daughter to relatives to live during that week. She had completely followed her doctor’s advice. She was simply preparing to die. It broke my heart. And, it made me angry.
Why would an oncologist give up so easily on a patient? And, more to the point, why would a patient give up that quickly?
So, how does a lung cancer survivor best advocate for themselves? Here are some ways that I have personally advocated for myself. Maybe some of them will help you, as well.
- Never take no, or inaction (a form of “no”), as the final answer. Keep fighting. Your life is most important to YOU! Don’t give up. If one doctor tells you to give up, find another. Until you take your last breath, keep fighting.
- Research your doctor. What do others say about him? Where was he educated? Is he interested in research? Is he with a private practice or a university hospital?
- Not all treatment facilities are created equally. The US News and World Report publishes a list of best hospitals every year. The National Cancer Institute designates certain hospitals that have been proven to deliver cutting-edge cancer treatments to patients.
- You know your body best. If something doesn’t seem right, make sure your doctor knows. And takes it seriously.
- My oncologist, somewhat jokingly, tells people that he works for me. But, in the end, that’s the truth. He does. If, at any moment I decide he is not doing an adequate job for me, I can fire him. I have no contract with him. I do not have to continue trusting my life to him if he loses my faith. The same is true for you in your relationship with your doctor(s). If you do not trust them with your life, because they indeed hold your life in their hands, fire them. Find one you trust completely.
- Conduct your own research. Look at respected sites, such as LUNGevity, American Association for Cancer Research, Bonnie Addario Lung Cancer Foundation, American Cancer Society, American Lung Association, Free to Breathe,
the National Institutes of Health (NIH), etc. Make sure that you can differentiate between someone’s opinion and vetted study results. There are lots of people out there who espouse quick cancer cures, but I personally am going to trust my life to clinical trials and to doctors who have invested a great deal of time and money in learning how to treat my cancer. If you are aware of what is out there, you can advocate for yourself. Unfortunately, not every doctor is right on top of what the latest treatments are.
- Join support communities (in-person or online or both). It means a lot to spend some time with others who “have been there, done that.” Most of us realize that the general public simply does not understand what it is like to be diagnosed with cancer. I think being diagnosed with lung cancer, the most stigmatized of all cancers, makes the misunderstanding by others even greater.
- One organization I have associated with is LUNGevity. It is dedicated to funding research for lung cancer and to providing HOPE to all lung cancer survivors. If you want to spend time with others who have lung cancer and exude HOPE, get involved with LUNGevity!
- Spend some time spreading the truth among your friends and acquaintances! Unlike what the general public, and unfortunately, even many doctors, believe, lung cancer doesn’t just happen to smokers. It doesn’t matter if you smoke or don’t, are white or black, male or female, young or old, skinny or fat. Lung cancer happens to people with lungs.
- Try to maintain as normal a life as you can. Eat as healthily as possible. Drink plenty of water. Exercise as much as you are able. I walked my two dogs every day during chemo. Sometimes, I could only manage a couple of blocks, but we got out and walked. Smile, even if you don’t feel it. Watch happy movies and laugh. Cancer is an awful disease and none of us want it. But, it doesn’t have to consume your every thinking moment. And, it shouldn’t.
- Start a binder or a file where you keep important test results and CD’s of all of your scans. Make lists of questions you have for your doctor so you don’t forget when you get into his or her office. It sometimes also helps to take along a friend of family member to doctor visits. Two sets of ears are nearly always better than just one, especially if you receive some shocking news during the appointment.
Keep your head up. Whether or not you smoke or smoked, lung cancer is a formidable foe. And, no one deserves to die from lung cancer; no one deserves to be looked down upon because of lung cancer. Don’t be ashamed.
And remember, there is hope. Always, there is HOPE!!
So … since I have had cancer, I have developed all kinds of new interests, or spent time trying to perfect (this is a strong word, but I can’t think of the one I need … thanks, Chemo Brain!) skills I already have. One of the new interests is gardening. And, one of the plants I added to my garden last spring was a lemon tree.
I have never tried to grow a fruit tree before, but some of my friends would post annual pictures of their lemon crops. I always wished I had a lemon tree, too. So, finally, in the spring of 2015, I ran across a nice tree at Walmart and brought it home. Its blossoms smelled like heaven.
It wasn’t very long before some of the blossoms fell off. In their place were teeny, tiny little green lemons!! So cute. I couldn’t imagine that those tiny little things would actually mature into something edible!
I enjoyed my tree all season long. I took pictures frequently as the blossoms and fruits progressed!
|Butterflies and bees loved the blossoms as much as I did!|
|Close-up of the tiny little lemon!|
|The scent is like heaven. I think the blossoms are very pretty, too.|
Waiting and watching fruit mature is a lesson in patience. I’m not particularly patient, to say the least, so it was a good lesson for me. There was nothing I could do to rush the progress. All I could do was wait, photograph, and watch! The little fruit appeared in April or May. A friend who had lemon trees told me that I would have mature fruit in October or so.
Sure enough! By October, my little fruit had grown into lemons like you find in the grocery store!! I was so excited! I know this must seem odd to people who garden … but, until last year, I never tried to grow anything. If it wasn’t on the grocery shelf, it didn’t come to our house.
By November, my little lemon tree was loaded down with big, juicy lemons. And, after waiting for them for so long, I couldn’t bring myself to pick them. Any of them.
Lemon trees cannot withstand cold temperatures. In mid-November, I decided I better bring mine into the house. Lemons and all.
You can’t tell by the pictures, but the tree is planted in a very large pot. The tree itself was not real tiny when I bought it. Because we had such a lovely (and rainy) spring, it grew by leaps and bounds. Getting it out of the yard and into the house was not an easy task! Especially with fruit hanging off of it!
But, we managed to get it indoors. Every day, I looked at that tree just loaded down with fruit. I kept waiting on the lemons to drop off on their own or to look shriveled and spoiled. But, they didn’t. In fact, I think they just kept on getting bigger and bigger!
Once, when my grandkids were here, we picked a couple. We ate one. It was good. We just left the other one on the table until it spoiled… Then, it was used in the disposal to make the house smell citrus-y!
In the end, and over a few months, we picked a few lemons, but we mostly left them on the tree. Finally, yesterday, January 17, 2016, I decided I should pluck the lemons off of the tree. The poor tree was trying to bloom to make more lemons. It wasn’t really fair to expect it to flower while still bearing fruit from the last season. Besides, I figured, it would not be nearly as productive if I didn’t remove its fruit burden from the previous year first.
Of the lemons I finally plucked, only one was no good. It had rested for too long against a branch of the tree, I think. It got cut up and put down the disposal.
So. Now I have a load of lemons. I don’t want them to go bad. But, I’m feeling too tired to really want to do anything with them. (This exhaustion often hits when I need to cook. I don’t enjoy cooking. If I had been offered an activity I love to do, my exhaustion would have quickly abated.)
The lemons sat on the table all day. I took pictures of them. And left them sitting.
Before we ate dinner, Robert asked when the lemon pie was going to be ready. My family kept waiting on those lemons to be picked so that we could enjoy some fresh lemon pie. That’s probably why I kept leaving them on the tree … I didn’t want to make a lemon pie! That’s unnecessary cooking! 🙂
(I am the worst housekeeper and cook you’ll find. I LOVE to be active, but I don’t enjoy cooking and I don’t enjoy cleaning. And, I try to avoid doing either one as much as I possibly can. I wish it wasn’t so, but it just is.)
I started feeling guilty. We all love lemon pie. We’ve all watched those lemons go from flowers to tiny little green orbs to real, live, big lemons. We’ve all thought about how good a lemon pie would be made from those home-grown lemons…
BIG SIGH. Okay! I looked up the recipe. Took several tries to find the one that sounded familiar (it has been years since I last made a lemon pie). The recipe I use uses corn starch. Great. I know I have some. But where?
Here I am. Not in the mood to make a pie in the first place. Looking everywhere for the corn starch. It isn’t anywhere that I think it should be. But, admittedly, my pantry has become a bit disarrayed. Okay, a lot disarrayed.
I was just about to decide I was going to have to go to the grocery store to get corn starch when I finally found the brand new, unopened box. (It was probably bought in 2012, but it was there waiting on me!)
I haven’t made a pie in a long time. I guess I overbeat the egg whites. We got those little droplets on top of the meringue that you get sometimes. I did beat them until they were REALLY stiff!!! I sort of combined two recipes to make the pie. I started with one that was on my phone and ended with one on the back of the corn starch box. It worked out okay.
|Taking that first bite! So exciting!|
|Yum!!! Pretty good stuff!|
Well … despite my not wanting to make a pie, we sure enjoyed those slices we ate last night. I’ve been dreaming of having another slice today! It was slightly warm when we finally could wait no longer last night. Today, it should be nice and chilled.
So. There’s a lesson here. Of course.
Lemons are awfully sour. Even these Myer lemons that are not supposed to be so sour. Most people don’t like to just sit down and eat a lemon the way you do an orange or a banana.
But, with a bit of sugar and a bit of fire added, the lemon becomes a sweet and delectable custard.
Like us. Hopefully. We go through the fire and hopefully we come out a better person as a result. Cancer is a fire, for sure. Do we let it consume us or mold us? The choice is ours.
That brings me to the following…
A good friend posted me yesterday with a link to a sermon she’d been listening to. She said it reminded her of me. I couldn’t wait to listen.
Here’s the link:
It is Dr. Charles Stanley preaching a sermon on “When We Don’t Understand Why.”
We often don’t understand why. Why did we lose everything in a fire or a tornado or an earthquake? Why did we get cancer? Or have a heart attack?
WE don’t know. But God does. And, for me, that’s all I have to know. HE has it under control. My job is to just continue living for as long as I have breath. My job is to turn those lemons into lemon pie!
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 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!
Well, this blog seems to focus mainly just on cancer. But my life isn’t just about cancer. Not by any stretch of the imagination! I actually probably cram more into life every day than I did before I was diagnosed. Now, it seems that life may more finite than I imagined. (In reality, life is finite for all of us! And only God knows when He’ll call each of us home so the logic is suspect, but nevertheless, there it is!) I tend to cram my weekends and holidays as full as I can get them with as much fun as possible!
The Dallas Arboretum
Yesterday, my best friend from the 4th grade, Patti, and I spent the day together. Patti came to pick me up and off we went to the Dallas Arboretum. We attended a breakfast for new members and then we wandered through the gardens until it got too warm.
Speaking of which … we have been blessed with very cool weather in mid-August in Dallas, TX. Highs have been in the low 90’s with lows in the 60’s. Unheard of around here where August usually brings us highs in the 100’s and lows in the mid-80’s.
I didn’t take my good camera with me, but had my little point and shoot. Always. It rides in my purse! Just in case I need it. (Unfortunately, I can’t always get it out quickly enough to capture what I want to preserve. Like the day when I was going to work and a rat came running out of plants on the median of the road. By the time I got the camera pulled out, he had run back into the plants…)
Here are a few of the pictures that were taken:
We really had a good time together. We always do. Laughing and carrying on … life is fun when we’re out and about.
I love the Arboretum too – lots of water features, beautiful flowers and landscaping, interesting people to watch… I am really glad we joined. Don’t the pictures just make you smile? The quality isn’t great – my little “purse camera” leaves a bit to be desired – by you can get the gist of some of what we saw!
Shopping with the Grandkids
Sunday afternoon was spent shopping with my daughter-in-law and grandkids. It is time to buy new school clothes! I arrived at Kohl’s where Sara and the kids were already shopping. My youngest grandson is Jonah, who turned 4 in May. He came running to give me a hug … and then said, “But Grandma!!! I wanted you to bring your camera with you!!!” Lucky for him, I had my purse camera!!! Fully recharged!
Jonah is 4 and goes to daycare. Jimmy is six and is entering first grade, while Jonathan is 11 and going into middle school. WHAT???? When did my babies grow up … middle school already??? Incredible!!!
Don’t you just suppose that other people who were shopping at Kohls today thought I was a crazy old woman? I can honestly say that I do not believe I have ever seen anyone following a bunch of kids around with their point-and-shoot camera at the ready!! 🙂 But, that’s okay! The kids love to have their picture taken and I love looking back at them!
Do you notice a common theme? We were there for school clothes shopping but most of the pictures were taken in the toy section!! The kids begged for toys while their mom was deciding what they would be wearing to school when it starts in a couple of weeks.
Jonah was the cutest. He asked if he could have some toys. I told him no because we were there to buy school clothes today. (Outfitting three boys is expensive!!! There was no more money for toys!) Jonah was not satisfied with that response. After all, he told me, he isn’t in school yet so he could spend his money on toys instead of clothes!!
I am still not loving the port! I hope when I go for my next treatment, I will change my mind about how I feel about having this foreign bump under my skin! It is just so ugly!!
I asked Robert to take some pictures of how the port looks seven days after it was inserted (I always want to say “installed” … what’s that say about me??!!) You can see that there is still significant bruising. I called the doctor on Friday because I was still in some amount of pain from the port. Pain may be a bit stretched … but I was certainly aware that something had been done.
Today, Sunday, I don’t think about it constantly but when I sling my purse over my right shoulder, I remember it is there!! 🙂 Hopefully, by the time I have my next treatment – about 1-1/2 weeks from now, it will be sufficiently healed that I won’t be in a lot of pain when they poke through the skin to access the port!