Category Archives: chemo

It’s about the Journey

I remember the days following my diagnosis as if they were yesterday. I was told I might not have very many more days here on earth, so I decided I better enjoy and make the most of the days I had. And, even though my initial prognosis was only four months, I somehow decided from the very beginning that I was going to try to bring hope to others with this disease.

Don’t let the diagnosis steal your joy

When my mom, husband and I showed up for my first chemo treatment, I wore a t-shirt that said, “It’s about the journey” and that’s the attitude I have tried to adopt. I asked my husband to video my first chemo treatment. I wanted to post it online to document the fact that a dire cancer diagnosis doesn’t have to be scary, doesn’t have to steal your joy.

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My Friend or Loved One Has Cancer. What Can I Do to Help?

Not so long ago, the question about what a friend could do for a loved one who had been diagnosed with cancer came up on a forum where I participate. I thought some of the responses from patients might help those who want to do something, but don’t have any ideas as to what to do.

A Bag Full of Goodies

When I was first diagnosed, my officemates took up a collection and bought a big bag that they filled up. They included beeswax lip balm, ginger candy (great for nausea), tissues, water, a small blanket, a journal and pen, a word search puzzle book, fuzzy socks, lotion, hand sanitizer and more. Additionally, they gave me a couple of pairs of comfortable lounging pajamas that I could wear when I got my treatments.

I still use the bag when I go out of town and often when I go for my treatments. I never use it that I do not think of my friends and feel grateful for them.

Another person posted that her sister gave her a diaper bag filled with many of the same kinds of things. Using a diaper bag is a great idea – they are usually pretty light-weight, have lots of nooks and crannies, can often be washed, and are roomy.

Gas Cards, Parking Passes, Restaurant Gift Cards

Cancer treatments often zap a person’s finances. It is sometimes difficult to afford the gasoline just to get to life-saving treatments. Several people on the forum mentioned how much they appreciated getting gas cards.

Similarly, many hospitals and clinics are located where you have to pay to park. At my facility, you have to use valet parking. It is $5 plus tip every time you go. If treatments are frequent, this adds up in a hurry. Giving the gift of parking passes is a huge relief for over-burdened pocketbooks.

Thinking about cooking after being in treatment all day is the last thing most cancer patients want to do. Having a gift card to a local restaurant would be a lovely way to end a long day.

Never Underestimate the Value of a Card or Phone Call

Unfortunately, cancer is often a lonely disease. Too often, it seems like people think it is contagious or something. So, just when you need it most, your support falls by the wayside. I think part of it is “out of sight out of mind” more than an overt action by friends and acquaintances but the result is the same.

It is uplifting to get an unexpected “I’m Thinking of You” card in the mail. Even better is a brief phone call, just to check in. If you’re like me and not much of a telephoner, a text message is also a way to get in touch. The point is not so much the vehicle used as it is to let your friend know you haven’t forgotten them.

When I was first diagnosed with cancer and was suffering from the terrible fatigue that accompanies many chemo treatments, I began sitting in my backyard photographing birds. I would then post the pictures on Facebook. One day, I received an unexpected package. A friend had sent me a bird identification book. It was such a thoughtful gift and meant the world to me.

Other Ideas

I will end with a list of more ideas that might be just perfect to show your friend or loved one how much you care:

  • Give a ride to treatment, the grocery store, or the park.
  • Bring over a meal. Even if the patient is too sick to eat, the family still needs nourishment.
  • A soft hat for those who have lost their hair may be appreciated.
  • A cozy blanket will surround the patient with love and warmth.
  • If they have a port, a port pillow can be a lifesaver.
  • Clean their house or mow their yard or do their laundry. These chores don’t go away just because someone has cancer.

What kinds of things have you gotten that meant the world to you? Sometimes, the smallest things, given from the heart, mean the most.

 

 

A Day in History

Five years ago today, May 8, 2013, I quit getting chemotherapy. I have to say, it was a happy, happy day for me to learn that I would not be getting chemo any longer. Chemo and I … we didn’t deal well with one another. No matter how many anti-nausea pills I took, no matter how long I took steroids, no matter what, I was sick, sick, sick from my treatments.

I’ve never been a sickly person. At all. I didn’t even have a primary care doctor that fateful day when I finally went in to see why I kept gaining weight … and we discovered that I had late-stage lung cancer. I hadn’t seen a doctor for 10 years or more (yeah, I’m one of those people who definitely didn’t take care of themselves with regular screenings or anything else).

So, when I was so sick from chemo, I didn’t deal well with it. I don’t know, maybe even if I had been more sickly, I still wouldn’t have dealt well with it! There were times, many times, when I wondered if it was even worth going through the treatments. I was spending way too much of my very limited time (my oncologist projected 4 months before I passed away) in bed, too sick to eat or drink or do anything except try to sleep away the misery.

At the same time as I was celebrating the fact that I was getting a break from chemotherapy, there was definitely some fear associated with quitting treatments! No treatments meant nothing was being done to hold those tumors at bay. Sure, they’d responded and shrunk some during treatments, but that was because we were bombarding them with poisons!

My doctor hoped that I could take a break from the chemo and that the tumors would stay stable or, if they grew, would do so slowly. Unfortunately, as we would discover when I had my next scan, his hopes were not realized. All of the progress we had made against the tumors was lost during the short time I was not receiving treatments.

As I sit here today, pondering my life and the fact that I am still here, I am grateful that I was diagnosed with my cancer when I was. It is sobering to think that if I had been diagnosed only one year earlier, I would probably be dead.

Stop and think about that for just a moment. It is hard to think about. And, many of us have friends and loved ones who have succumbed to the disease, even recently. They were diagnosed too soon to be saved. Why? Well, partly because lung cancer is a really tricky disease. You often don’t have symptoms until you have only months left to live. So, doctors are faced with an uphill battle because late-stage cancer is really difficult to treat.

Another reason why we are still losing way too many of those diagnosed with lung cancer is because it is so very severely underfunded. Researchers are making such tremendous progress in finding new ways to treat this insidious disease, but they are limited by the lack of money available to them. It boggles my mind to think about what they could be doing if they had the kind of money that breast cancer or prostate cancer gets each year.

So, the purpose of this post is two-fold. First, I want to thank everyone who generously gives to help fund research. You are quite literally lifesavers. If not for your heart and your help, people like me would not have had cutting-edge therapies to try when chemotherapy quit working. Thank you, thank you, thank you! From the bottom of my heart, thank you!

The second is that I want to encourage everyone to give to lung cancer research. It doesn’t have to be much. If everyone I know gave only $5 or $10, it would add up to a reasonable amount of money. If they shared with their friends and their friends gave only $5 or $10, the cost of a Starbucks and a donut, the funding would begin to snowball and just think of where we might be in finding … dare I say … cures … or, at least, therapies that could help treat this disease as a chronic illness instead of the killer it still is.

It hurts my feelings and boggles my mind that I have so much trouble getting people to give to this cause. It hurts my feelings because I take it very personally. It’s MY LIFE I am advocating for! Opdivo is keeping me alive right now. But, when it quits working, there is not another treatment for me to try. Selfishly, I want researchers well-funded so that I have some more options when that time comes.

It boggles my mind because even those who contact me and want me to pray for or talk to a loved one of theirs who has been diagnosed don’t give toward finding better therapies. If not those who either have someone living with or who has died from lung cancer, then who can we expect to help fund life-saving research?

Where can you donate? A few of the foundations that I support are:

Bonnie J. Addario Lung Cancer Research Foundation

LUNGevity (if there is a way to designate that you’re donating on my behalf, please do!)

Lung Cancer Research Foundation (where Free to Breathe merged) – I will be posting a link to a donation site on my behalf soon)

Lung Cancer Alliance (if there is a way to designate that you’re donating on my behalf, please do!)

Cancer Research Institute (not lung cancer specific, but cutting edge in immunotherapy)

 

Dealing with the Nausea and Vomiting Associated with Chemotherapy

When I think about my chemotherapy experience, I think of three things: vomiting my guts up, severe constipation and extreme fatigue. My chemo treatments were on a 3-week rotation. I suffered mightily during the first week, felt better the second week, and felt pretty darn good by the third week. The vomiting only lasted a few days, constipation lasted a bit longer.

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Save Your Life With a Clinical Trial…I Did

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.

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originally published 10/6/2016

A Man Called Ove and Other Audio Books

I am a latecomer to many things technology. I was once on the cutting edge, but that was now many years ago, I hate to admit. I can usually click my way around to figure out enough to be dangerous, but I am definitely slow when it comes to technology these days.

I was once active on Facebook. In recent months, I have decided a complete hiatus from it is healthiest for me. I signed up years ago for Instagram. I think I used it once. I signed up for Twitter so that I could participate in regular Twitter chats about lung cancer. Unfortunately, I find them difficult to follow and because I don’t know Twitter, difficult to understand.

Snapchat, nope. Pinterest and Google+ … well, yeah, but I don’t actually do anything much with them. (I do save some dog treat recipes to my Pinterest account.) There are other apps that I had never even heard of until recently that obviously haven’t made it to my list of favorites!

What’s all this have to do with anything, you may be asking…

Well, I am also new to audiobooks.

Chemo treatments gave me chemo brain. Chemo brain is a phenomenon that is real and that is different than anything anyone else experiences. Most of us who have it … and way too many of those of us who have had chemo do … hear friends and acquaintances try to commiserate by saying, “Oh! I have chemo brain, too! But, I never have had chemo.” Well, maybe, but doubtful.

One of the gifts of chemo brain has been the robbery of my ability to read. I used to love to read. I was a voracious reader from the time I was a young girl. I well remember my mom dropping me off at the Midland library, where I would wander the aisles for hours. She would come pick me back up and I would have checked out a big stack of books, all of which I would read before time to return them.

After the advent of chemo, concentrating long enough to read a page, much less a book, became difficult. Remembering what I had read was just not happening.

So, I quit reading. In the last year, I have managed to read a few books, but they have to start off very engaging. And, many may start off engaging, but I just can’t read them. So, again, I usually just don’t try to read much.

In the last few weeks, I have discovered a new way of “reading.” Audiobooks. I have now listened to two. One, by Greta Van Susteren, Everything You Need to Know About Social Media (Without Having to Call a Kid), taught me all about the social media apps I need to learn more about. It was a book I enjoyed a lot. I want to see the hard copy now.

Today, I listened to A Man Called Ove. It is a nine-hour recording. I listened straight through. I admit that I may have slept through a couple of parts. Not because it was boring, but just because I laid my head down … and when I did, I fell asleep!

No, the book wasn’t boring at all. It was so entertaining. I never thought that a “book on tape” could hold my interest, but I was wrong. My only problem with them is that once I start them, I don’t want to stop. I want to listen all the way through. And, nine hours is a long time to invest all at once! Of course, because I am a slow reader under the best of circumstances, nine hours is less time than I would have likely invested if I was actually reading the book myself, especially now, with my chemo brain.

A Man Called Ove had me laughing out loud over and over again. I was so absorbed in the book that I really never thought about cancer or disease or anything other than the book.

So, the point of this post is to encourage my friends who, like me, suffer from chemo brain to consider listening to books on tape. You can get them from your library. That’s where I have been getting mine. I am getting mine online so that I don’t even have to worry about returning them. When my time is up, the program takes them back. They’re never late!

My library offers books and more using two different apps. One is called Libby and the other is Hoopla. It is likely that your library uses these apps or similar to provide books and other resources to you.

Libby allows library card holders whose libraries participate to borrow ebooks and audiobooks. If you have a library card, see if you can find your library among those that participate. You can use Libby’s built-in e-reader or send books to your Kindle. The Libby app, which is part of OverDrive, includes an audiobook player.

Hoopla’s Web site explains its service options:

hoopla is a groundbreaking digital media service offered by your local public library that allows you to borrow movies, music, audiobooks, ebooks, comics and TV shows to enjoy on your computer, tablet, or phone – and even your TV! With no waiting, titles can be streamed immediately, or downloaded to phones or tablets for offline enjoyment later. We have hundreds of thousands of titles to choose from, with more being added daily. hoopla is like having your public library at your fingertips. Anytime. Anywhere.

Even if you can’t get out of the house, or out of bed, for that matter, a book on tape might be a really nice diversion for you. I stream mine on my cell phone and wear an inexpensive pair of earphones to listen (I did run the battery out of the first pair and had to change to the earpiece I bought to talk on the phone). No holding the book, no energy taken at all. But a nice way to forget your situation and lose yourself in a mystery or love story or comedy that makes you laugh out loud. (Try A Man Called Ove for laugh-out-loud fun.)