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Lung Cancer Survivor of 7 1/2 years!!!

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Donna N.


I was beginning a new phase of my life. I had just married a wonderful man—my husband, my “knight in shinning armor”—and we were looking forward to spending a wonderful life together. My husband was a sergeant with a police department, and I had a good job with a utility company as an administrative secretary.

We had lived through our share of challenges, including the death of my mother-in-law from breast cancer, but we were finally starting to relax and enjoy ourselves. We went to the lake every weekend to hang out on our 29-and-a-half-foot cruiser. We had three grandchildren and were able to take our oldest, Taylor, to the lake with us on weekends. I had lost 30 pounds and was finally able to fit into a 3-4 dress size again; (I had always worn a size 0 to 3).

Then all hell broke loose.

A Raging Cough

I came down with a raging cough and an upper respiratory infection so I went to the doctor to get prescription-strength cough medicine. I left the doctor’s office feeling very ill, and by 9 that night, I told my husband I was coughing so hard that I was wetting my pants. Worried, he took me to the hospital immediately.

That night, I was treated very aggressively—more than at any time in the past. After taking an X-ray of my chest, they said I didn’t have pneumonia, so I went home with a handful of drugs and a neubulizer.

At 7 the next morning, my husband had left for work and I was looking out the door when the phone rang.

“I Saw a Mass . . .”

“Donna" said the voice on the other end. “This is Dr XXXXXXX from XXXXXXXXXXXXXX ER. I just looked at your X-rays from last night, and I saw a mass on the upper right lobe. I want you to have a CAT scan in within four days, no longer.” Much later, I found out that Dr. XXXXXX's mother had passed away from lung cancer 10 years before.

I immediately called my husband, told him what the doctor said, and added, “I don’t care how you do it, but get me a CAT scan today!” I was crying. He called back in 30 minutes, saying, “Your appointment is at 2 p.m., I’ll pick you up at 1:30.”

As I sat in the office waiting for my CAT scan, I felt like I was in a morgue: All the long faces, no one smiling. I told my husband I wanted my results that very day—Wednesday, June 14, 2000—and he got them for us.

The CAT scan confirmed that I had lung cancer. I cried and cried, and he tried to be encouraging. I made the necessary calls to my two brothers, children, work, etc.

The next day we went to the doctor, who told me I had maybe a year to live. I told him no chemo or radiation. I wanted quality, not quantity, of life—and I expected him to take care of the pain at the end. I wanted to live my last year.

Walking in a Stupor

When we got home, my big, burly husband broke down and cried in my arms. “I just can’t do this,” he said. He had served in Vietnam for 13 months and in law enforcement since 1976 - 2003. This was the first time I had ever seen him cry, and I knew then that I had to rally and support him.

We walked around in a stupor. At 4:30 the next afternoon, my doctor called and said the surgeon thought he could get all the cancer in my lungs. But despite the surgeon’s comments, the next day when I was alone in the house, I screamed as loud as I could and cried myself into exhaustion.

“I Forgot God”

Stupidly, I started smoking when I was 34 and quit 13 years later—on the day of my surgery, June 29, 2000. But I don’t blame my cancer entirely on smoking. I had been exposed to secondhand smoke for my entire childhood and have always been prone to chronic bronchitis and pneumonia, which scarred my lungs.

For the first few days after being diagnosed, I forgot God. It’s as simple as that. But I truly believe that God laid a hand on my shoulder four or five days after I was told I had cancer because I felt a complete calm come over me. Somehow, I just knew that I would be okay. Two weeks and one day after I had been diagnosed, I was in surgery to remove my upper right lobe and a wedge out of my middle lobe—and I wasn’t afraid.

Of course, the road wasn’t entirely smooth. I was told that a thoracotomy was the most painful surgery you can have, even more so than having your chest cracked open. I was cut between my ribs, just below the shoulder blade and curving around under my right arm. Boy, were they right!

The Pain of It All

After my surgery, I was in the pain clinic for three years. They tried everything: 25 to 30 intercostals—where they inserted a needle at the very edge of my ribs and tapped it to keep from puncturing my lung—and seven to nine trigger-point injections every visit. They tried everything for my pain from the surgery, but nothing would get rid of it.

As a last-ditch effort, they installed a Dorsal Cord Stimulator in September 2002. The $26,000 battery and computer chip were placed in my left hip, with wires running up to the pain on the outer side of my spine.

The battery was supposed to last three to five years; it quit after less that two years. When I went to replace the battery, I acquired a staph infection. I spent the next six weeks with a PICC line in which I gave myself antibiotic shots every day.

I have never been as sick as I was then, and I never want to be there again. A disease specialist told me that I could never have anything implanted into my body again. So, within two months, that $26,000 device was removed and thrown in the trash.

Today, I manage my chronic neuropathic pain with morphine and Percocet. If they don’t work, I go to my pain specialist for shots of Demerol and Phenergan.

Becoming “Inward”

It was devastating to have pain all the time and to be going to the doctors every month. As a result, I went inward with my emotions. I stopped crying. I just couldn’t sit down for five minutes and be sad, because I felt I had to keep this façade up all the time. On the other hand, I tear up easier on just about everything. It’s really hard to describe.

Physically, I became less active due to the severe pain, and gained more weight that I did being nine months pregnant! I’m still working on that part of my life.

Mentally, I knew that I would be okay—and being told I only had one year to live did not deter that fact. I am okay as long as I tell myself that I am until I literally stop breathing. That is so important.

All I can say is do what your doctors tell you, but don’t listen when they tell you that you have only so long to live. They have no idea how long you will live. I believe that God had that mapped out when you were born, so you might as well enjoy yourself as much as you can.

“Knocked off the Pedestal”

Last year, however, I was knocked off my pedestal with one swoop with three bad scans, which showed my stomach was my worst enemy at that time. I had a hiatal hernia 23 years ago, but now, with all the stress, the hernia is huge.

The doctor said I would either have to control the hernia with food and medication or have surgery that involves “flipping” the stomach somehow. I was ingesting some of my stomach contents into my lungs, and it showed up on the scans as “nodules” and “gray mass,” thus the three scans.

Dealing With “What If’s”

Of course, there are always the “what ifs:” The fear of only having a partial lung on the right side; trying to stay away from sick people because I’m more susceptible to getting ill; the scare of my yearly CAT scans; and of course, the emotional scarring.

As for my prognosis, I either take one step after another and draw in another breath after I exhale, or I have let the cancer that is no longer in my body win. The surgeon thinks there is no more cancer. He actually said that if I changed my living habits—quit smoking, eat healthy—he didn’t think I would ever be diagnosed with lung cancer again.

I’m not going to give you one of those testimonials about “how wonderful I feel now and how great it is to be alive.” The truth is it sucks to have cancer, pure and simple. You have highs and lows, and your life will never be the same again.

I’m letting my hair grow back. I had decided in 2001 to cut it and then in 2004 to cut it even shorter. I didn’t think I deserved long hair past the middle of my back because I wasn’t going through chemotherapy. I’ve gotten over that.

Getting an Advocate

Emotionally, it is so important to have an advocate to go to the doctors and hospitals with you, since you’ll only hear about a quarter of what the doctors say.

My husband has fought for me. I would never have accomplished what he did. To be fair, he would wear his police uniform, so he did command respect just by his presence. To those of you who don’t have a police officer in your pocket, get a friend, spouse, child or whomever you trust to go with you to all your appointments.

My oldest brother, who was always a “mother hen” because we lost our mother when I was only 12 and he was 23, also really pitched in to help and be there for me.

Highs and Lows

Mentally, I have yet to find a very good therapist to talk to. Emotionally, I still go through highs and lows, but I just can’t seem to let myself break down and cry in front of someone.

My hopes for the future are because of my lung cancer. I want to talk to more people one-on-one about my ordeal and what they’re going through. Even if all I do is listen, that’s an amazing help. I would like to tell people from the medical occupations the patient’s side of the story: lighten up, because we’re not dead yet, so treat us as the humans we are.

“Where Are the Survivors?”

Before I was diagnosed, I didn’t know that lung cancer was the number one cancer killer of both men and women around the world. After I had researched and found that I had survived the worse possible cancer, I became a volunteer for the American Cancer Society and did an interview with local high school students about not smoking. I was profiled on a television news program, and I’m going to do an update this November.

It is, however, very sad that survivors are very scarce. Only 14 to 15 percent of people with lung cancer live five years after being diagnosed. I’m still shocked at the lack of survivors when I look for someone who I can talk to.

“You Can Do Miraculous Things”

If you’ve been diagnosed with lung cancer, allow yourself time to take it in. Remember, you can do miraculous things, things you never dreamed of doing.

Never give up, rally your family and friends, and follow your heart and instinct—they usually won’t disappoint you.

I wear my “lung cancer ribbon” on my left shoulder every day. It is made out of Australian crystals. I would love to have one made out of diamonds, but then again, “Oh, well!”

Donna N. Tips for Lung-Cancer Patients

1. Have a support system, even if it’s just you and God, and find a cancer support group.

2. Find a good doctor. Ask questions, do your research, and if you don’t like your doctor, find another one. I’ve fired three doctors, and I think the worst I’ve been called is “challenging,” due partly to my pain not responding, my sense of humor and sometimes my “I want it my way when I want it” attitude. I try not to do that too much anymore.

3. Listen to your body, let it tell you when to rest, and then do it. Don’t put off rest.

4. Make sure your medical team knows your body. If they don’t listen the first time, keep telling them. This is an aggressive disease, so you must be more aggressive.

5. Use your animals to heal. My cat, Ashton, curled up next to me for three months after my surgery, and never left my side. My husband used to kid me that he knew when I got up because that’s the only time he saw the cat. Aston purred his healing on me, but never stepped on my incision or my right side.

6. Take care of, and understand, your caregivers. They are a Godsend—and more at a loss than you are. They don’t have anyone to tell them they have to be here at this time or to do something. They just blindly follow along in your trail and try to do the best that they can. That may not seem enough sometimes, but don’t ever say it. Always tell them “Thank you.”

7. Take a breath and tell everything to your doctor, even if you’re telling it for the umpteenth time, so they don’t miss anything important. If any doctor doesn’t have time to listen to you, how much time do you think he or she will have for your disease?

8. Realize that if you smoke, quitting will be hard. I’ve not smoked for seven years and I still get a twinge. That’s normal, but don’t give in to it.

9. Love something/someone more than you love yourself. If you have children or grandchildren, wrap yourself around the miracles they are and enjoy those moments. You will forget about yourself for a while, I promise.

10. Believe in yourself and in your body. If you are still breathing and walking around, then you are still alive! Don’t let anyone treat you any differently.

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