THE NEW NORMAL: Life after the diagnosis

 

THE NEW NORMAL: Life after the diagnosis

 

Date: March 6, 2014
by: Brian McMillan | Executive Editor

 
 

 

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Their bags were packed. Their mini refrigerator was stocked. Arnie and Maxine Levine couldn’t wait to get in their RV and hit the road for their annual vacation around the country. In 2011, the retirees took a four-month, 14,400-mile excursion to Alaska. This year, in 2012, it was going to be West Virginia, and then to Buffalo, N.Y., to see their children, whom they missed terribly, now that they lived so far away from them, in Palm Coast.

But as they prepared for the trip, Maxine also was having tests done for back pain. She had physical therapy and an MRI. Finally, her regular doctor sent her to see a hematologist, Dr. Padmaja Sai, at Florida Hospital Flagler, saying it was possible that it could be myeloma — not something Maxine had ever heard of. She didn’t worry about it too much, in the excitement of the trip.

“And it wasn’t until I saw the sign on the door — hematolgist/oncologist — that I knew I was in trouble,” Maxine said. “I had no clue that she was an oncologist. He just told me there was a spike in my blood protein, and he would like me to see a hematologist.”

Arnie recalled: “I worked in hospice for a number of years, and my wife worked in oncology as a medical biller. So you would think that we would know what to do, that our minds would be somewhat stable, but, no. When it hit us directly, it was a shock — it was just a shock. I don’t know if we were able to even think, except to know that our lives were going to be changed. There were all the emotions of fear, of depression, of not knowing what the future would hold. Not knowing to what degree the illness had taken. We were told it was in the beginning stages, but it was obviously there, and chemo had to be done immediately.”

Immediately? But what about the trip? They were supposed to spend time with friends at a great place in West Virginia. They had reservations! Was there any possible way to delay the treatment?


‘Mom has cancer’

There wasn’t. And so, they returned to their home on Clementon Lane. They began to unpack the refrigerator and the other luggage. “We unloaded the entire camper,” Maxine said. “It was almost robotically. Mechanically. Our minds had not quite comprehended the journey we were headed for.”

“Plus,” Arnie said, “calling up our children and saying, ‘Mom has cancer,’ was devastating not only to them, but devastating to say — ‘Mom has cancer’ — that we’re not going to be able to meet up with them on vacation, and that Mom has to start chemotherapy.”

Instead of going to Buffalo, N.Y., the Levines went to the doctor. Maxine had intensive chemotherapy, radiation, surgery and a stem-cell transplant that required a five-week stay in Tampa, at the Moffitt Cancer Center.

Arnie stayed in the RV, with their dog, Laci.


‘I think it’s beautiful’

March 18 is the anniversary of the transplant, and Maxine is in remission. Over the course of her treatments, she lost 44 pounds.

“I wasn’t sad to lose it,” she said. “It was funny: All these years, I’ve been on Weight Watchers and tried different diets. And then the doctor said, ‘You need to put back on 10 to 15 pounds. You’re losing it too fast.”

Today, Maxine said, “I look in the mirror, and I don’t see a sick person. I look good, and I feel good in general. The two biggest setbacks are fatigue, which is caused by the drug, and neuropathy that has set into both feet, but both are very common side effects. Other than that, if you saw me on the street, you would never know what I went through in the past year.”

She also lost her hair, which was coarse and auburn, and it grew back fine and salt-and-pepper.

“I think it’s beautiful,” Arnie said.


‘Soon, we’ll find a complete cure’

Multiple myeloma is a cancer of the plasma cells, which are present in bone marrow.

“In some folks, they have bone pain, and they find lesions in the bone, which is one way myeloma presents,” Sai said. “The lesions can be picked up in a typical X-ray. Imagine an apple and take a bite. That’s the way the bone looks.”

The yearly incidence is four or five being diagnosed per 100,000 people, Sai said, with the average age past 66. It’s not a common cancer — only about 1% of cancer patients have myeloma — but, like breast cancer, it has been the beneficiary of a great deal of research.

“Ten years ago, it was a fatal disease,” Sai said “and they used to die from complications from the treatment itself. But in the last few years, there has been a lot of advancement, and the mortality is minimal compared to other cancers.

“We can’t use the word ‘cure,’” Sai continued, “but we are keeping the patients in complete remission for years. Soon, we’ll find a complete cure. If there is one cancer that we can say we get excited about, it’s myeloma.”

March is Multiple Myeloma Awareness Month, and the Levines were recognized March 3 by the Flagler County Board of County Commissioners for their efforts to start a support group in Flagler County, with the help of Florida Hospital Flagler.

Patients with bone pain or anemia should check with their doctors to be tested, just in case, Sai said. “When I see a person with myeloma now, I’m giving them hope.”


‘Emotionally, we are sharing this’

Still, there are times when Maxine is too tired to leave the house. It’s the new normal, something they have come to live with.

“We compartmentalize our time,” Arnie said. “When Maxine has a good day, we do things that we can do. … I’m not angry about it. It’s the way it is. You can’t go screaming in the streets continuously.”

Arnie refers not to “her diagnosis,” but “our diagnosis.” He said, “The caregiver is part of it. I don’t have the illness, but, emotionally, we are sharing this. When she is not feeling good, I feel sad.”

In April, Maxine is scheduled to get another test at Moffitt, and if she’s still in remission, the plans are clear: It’s time for the RV again. First, to Albuquerque. Then to California, and finally, to see their children in Buffalo.

“It’s all contingent on Maxine’s examination,” Arnie said. He’s cautious, not wanting to repeat the disappointment of 2012, when everything had to be unloaded.

But at the same time, he’s optimistic. And he’s planning the trip as a way to fight back. He has been printing maps and looking up the campgrounds on the way to California. “I’m going to make reservations,” he said. And then he said it again: “I’m going to make reservations. But I always ask, ‘What’s your cancellation policy?’”

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Currently 5 Responses

  • 1.
  • Dear Maxine & Arnie,Your story is inspiring to me & others whose lives have been struck with cancer issue,You have the very best with the Moffit Cancer Center,Stay strong,enjoy your vacation! Congratulations with your remission!
  •  
  • Judy Goodson
    Wed 19th Mar 2014
    at 10:24am
  • 2.
  • What a beautiful and inspiring article. Although I know the last year was very difficult for both of you, it is heartwarming to see you organizing a support group to help others on this difficult and emotional journey. I have no doubt you will make it to Buffalo this year! Keeping you both in our prayers for a healthy check up.
  •  
  • Mary Campbell
    Mon 17th Mar 2014
    at 11:06pm
  • 3.
  • Keep up the good work and we love you. I am so proud of you my friend.


    Love and Prayers!!!!!!!!
    Terri & Lotti
  •  
  • TERRI THOMPSON
    Thu 13th Mar 2014
    at 9:51pm
  • 4.
  • Maxine and Arnie - Wonderful attitude and outlook. Sorry to hear about your challenge but happy to know you've risen to the ocassion. What a team! - Kathryn & Gabriel
  •  
  • Kathryn Lopez
    Thu 13th Mar 2014
    at 10:13am
  • 5.
  • You look great Maxine!! Keep up the faith and the valiant fight!
  •  
  • palm coaster
    Tue 11th Mar 2014
    at 8:17pm
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