Advocate for Yourself

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.

It is hard enough to be diagnosed with cancer. But, when you are diagnosed with lung cancer, it is a double whammy. The stigma that associates with lung cancer can make people look down on you or discount the importance of your disease and your fight. 

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!! 

Turning Lemons into Lemon PIE!

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:
http://www.intouch.org/watch/when-we-dont-understand-why

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!