I Have to Start Chemo … And I’m Scared

It was six years ago, but I well remember my first chemo treatment … and the days leading up to it. It was terrifying. We hear so many horror stories about chemo. It is no wonder we all face it with dread (understatement of the year).

Watching my dad’s treatment

I watched my dad go through chemo and radiation back in the 1970s for the same illness as I have – nonsmall cell lung cancer, adenocarcinoma. He handled radiation with no problem, but chemo was a different story altogether. He was so sick from it. I remember how pale he got and how weak. He was definitely not the poster child to encourage anyone to want to do chemo. So, I always said, “If I’m ever diagnosed with cancer, I will do radiation, but I will not do chemo.”

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I finished with my treatments, why am I still so tired?

I hear this question all of the time, “How long did it take for you to regain your energy after treatments?” or “I finished treatments a month ago and I am still exhausted. Why?” Have you asked that question?

Bouncing back after treatment and cancer

The sad reality is that our bodies often do not bounce back nearly as quickly as we wish they would after being assaulted with chemotherapyradiation, or surgery. And, don’t forget. Not only did we have to fight the treatment, but we also fought the cancer itself. Double-whammy!!

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Cancer, Insurance, and You

Did you cringe when you read the title of this article? I did when I wrote it. Dealing with insurance is one of the things I hate most about being sick. I want to share some tips that might make this odious task a little easier.

1. It isn’t as simple as just picking one plan over another one

There are so many things to consider when choosing an insurance plan. We don’t simply see one specialist. Most of us have a medical oncologist, possibly a radiation oncologist, a surgeon, a pulmonologist, radiologists to read our scans, internists, and the list goes on. And, even if they all work in the same hospital or clinic complex, they may not all take the same insurance plans.

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Tools to Help Us Understand and Manage Cancer Costs

I hate dealing with insurance. Absolutely, positively detest it. For many years, the thought of having to deal with insurance actually kept me from even going to the doctor. My distaste for dealing with insurance could have easily cost me my life.

Where to start?

I imagine others feel similarly about insurance companies. It just seems so confusing … and often, it also seems like the insurance companies have us patients over a barrel. Dealing with them can become frustrating really quickly. On the other hand, what would we do without them? I cannot imagine learning that I have cancer and realizing that I have no insurance to help cover the costs.

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Rise to the Challenge. And Carry On.

It was just about a year ago when I got news that turned my world upside down…again. I had been in a clinical trial for right at four years. During that time, I had gotten countless CT scans and nearly 100 infusions of the immunotherapy drug, Opdivo.

Preparing for Infusion #100

Ninety-eight infusions of Opdivo, to be exact. I knew about immunotherapy and how it works before almost anyone. I remember going to the ER one day in 2014 with an unexplained fever and warning them that I was on immunotherapy. The nurses, techs, and doctors looked at me like I had three heads. They had absolutely no idea how to pronounce it or what it was. Until then, I don’t guess I really realized just how new this treatment really was.

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Clinical Trial Participation Contrasted with Standard of Care Treatments

Back in 2013, I opted to join a clinical trial. My first-line chemotherapy treatments had worked briefly, but once we stopped the treatments to give my body a rest, the tumors took full advantage and made up all the ground they had lost during treatment.

Joining a clinical trial

When I joined the trial, I had basically run out of other options. I could have opted to undergo docetaxel treatments, but my first oncologist had dissuaded me. He told me that docetaxel often was not as effective as my first-line treatment and that people frequently did not tolerate it as well. I had been extremely ill while undergoing my first-line treatment. I chose not to participate in a treatment where there was a big possibility that I would feel even worse.

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Inside a Mind Addled by Chemo Brain

Do you know what frustrates me as much as almost anything? Having an idea and losing it before I can make it happen.

Does that happen to you? I guess I experienced it to a point even before chemotherapy blessed me with chemobrain, but oh man!! It is terrible now.

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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.

 

 

An Open Letter to Caregivers

Dear Caregiver,

I was diagnosed with stage IV lung cancer back in October 2012. While I am feeling quite well most of the time now, we went through a period of time when it was far more touch and go. I thought it might be helpful for you to hear from me, as a patient.

In lots of ways, I doubt my husband and I have experienced the same frustrations as many of you have. I have been mostly healthy, despite my dire diagnosis. So, I may not answer many of your questions with this missive, but I hope I address at least a few.

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