• June 2014

Surviving Leukemia

Each year, in communities across the country, dynamic men and women raise funds for blood cancer research by engaging in a spirited competition to earn The Leukemia & Lymphoma Society’s title: Man & Woman of the Year. To date, candidates have helped LLS invest almost $1 billion in research to advance breakthrough therapies.

In 2014, Northern Virginia’s Debi Jo Wheatley threw her hat into the race to honor her husband Howard, who died of chronic lymphocytic leukemia on May 24, 2011.

A registered nurse for nearly 30 years, Wheatley put her skills to the test in July 1991 when Howard was diagnosed. For two decades, the couple lived with and battled his illness.

After his death, Wheatley and her mom took a trip to one of their favorite places in the world: Italy.

Morning after morning, Wheatley sat in a cafe pouring out her thoughts and feelings in a love story that eventually became her first book, “Journey of Love, Living With Leukemia.”

“I wrote the book because I want others to realize that a diagnosis of cancer does not always mean the end,” Wheatley explains. “It can be a gift that gives you the opportunity to say what might remain unspoken, to not put off until tomorrow, to cherish every moment, and to know that there are solutions to insurmountable obstacles. And, finally, that love can endure even in the most challenging of times.”

Whether or not she wins the 2014 Leukemia and Lymphoma Society Women of the Year award, her long-term goal is having Howard’s name on a research grant honoring the courage of his fight. The campaign ends June 14. Learn more at www.forhowardlls.com.

Scroll down to read an excerpt from Wheatley’s book.


“Journey of Love, Living With Leukemia

By Debi Jo Wheatley

Howard and I met by chance in the fall of 1979. I had just moved to Northern Virginia from New York and was out with a friend for dinner and dancing. After dinner, I attempted to get the bartender’s attention to order some wine. Howard was seated at the bar and offered to order it for me. Howard struck me as quiet and kind and for some very strange reason I trusted him right away. He asked me out on a date at the end of the evening and the rest, as they say, is history.

But every couple has its own history and each one follows its own path. We dated for five years before getting married on June 9, 1984. That seven-minute ceremony gave me four for the price of one as Howard’s three teen daughters were included in the package deal and lived with us.

The part of Howard’s and my love affair that began right after our seventh wedding anniversary was marked with the words: “You have chronic lymphocytic leukemia and you will be starting your chemo treatment today.”

July 1991 was the month we were supposed to leave for Spain for a three-week vacation. Howard had been feeling poorly for a few days and I was away in Florida visiting my grandparents before we left. My grandmother hadn’t been feeling well either and I wanted to see her prior to our trip. Howard called me on Friday, the day after I arrived, saying he was feeling poorly. Typically, he never complained about anything, but said he was going to bed early that evening. The next day I suggested he go to Urgent Care; it was a Saturday. They diagnosed bronchitis and started him on antibiotics. Later that evening he said he was feeling a bit better.

However, the next morning Howard woke up feeling worse. I instructed him to go back to Urgent Care and get a chest X-ray and blood work to rule out possible pneumonia. He had complained of some shortness of breath and was running a low-grade fever. They did the blood work and changed his antibiotic.

I was coming home the next morning. When I arrived at the airport, I was shocked to see how gray he looked. When I left on Thursday he had been fine, but a bit tired. He said that the lab had called and that his white counts were off.

“How off?”

Up to 20 (20,000). I had no other results and wondered if it was pneumonia or another raging infection. He said the Urgent Care doctor wished to see him the next morning to repeat the blood work.

Together we went in and the doctor ordered a CBC (complete blood count) to see if the white count had increased. He promised to call us the next day with the results. If the white count did increase, then Howard was to see a hematologist/ oncologist immediately. Being a nurse, I told him to get the blood work stat, make an appointment with a doctor for the next day, and to give a broad spectrum IV antibiotic to get started in case it was just infection. We could always cancel the appointment if we didn’t need to see the doctor.

We got the call about 4 p.m. with the news that the white count was now 27 (27,000), so we needed to keep the appointment that was made at the Fairfax Prince William Hematology-Oncology practice (now known as Virginia Cancer Center).

We met with Dr. Robert the next day; he was fairly new to the practice. He set up the exam table and took Howard’s blood pressure. When he saw me looking at him strangely, he asked me what the problem was. I told him, as a nurse, I had never seen a doctor take the blood pressure at the office. He said he really liked to get to know his patients. Little did we know that Dr. Robert would become an intimate part of our marriage and our lives for the next 20 years.

Dr. Robert told Howard he would be doing a bone marrow aspiration that day and had ordered an MRI the next. They let me stay and Howard didn’t even flinch when they drove the large needle into his hip bone. On the way home, we were both a bit quiet and spent the evening watching TV and trying not to think.

Howard had the MRI the next day, which was a Thursday. On Friday morning in Dr. Robert’s office, we learned of his diagnosis. I sat on my hands wanting to cry, but watched my husband look at Dr. Robert and say, “At least we know what it is, let’s get started on taking care of this.”

Dr. Robert informed us that chemo would begin immediately—a three-drug cocktail given IV push, i.e., when the nurse would push the drug through an IV in his arm rather than hang it from a bag of solution.

Initially, he was scheduled for six rounds of chemo, once every three weeks. When I asked how they came up with six, Dr. Robert told me it was half of 12 and that there are 12 months in a year. Quite scientific—not! As for dosage, he said they calculate how much would kill you then back it off. Probably shouldn’t have asked!

When we inquired about the prognosis, we were told 10-12 years. However, Dr. Robert didn’t believe in that. He said getting a diagnosis of cancer is saying to you don’t ever put off doing anything you want to do. Knowing we had more time helped, but Howard was just happy to have a name to put to why he was feeling so horribly.

On the drive home, Howard wasn’t feeling too badly. I jokingly said that I was glad that it wasn’t a brain tumor since I am always misplacing things and he wins the scavenger hunts; we would clearly be screwed.

Telling our family and friends was the next hurdle. Howard went to lie down and I started calling. How do you tell someone that a person they love has leukemia? It’s a good news/bad news kind of thing: “He has leukemia, but it’s not as bad as some types of leukemia?” None of it is good, but at least we had a chance that this might be manageable for a little while.

At 35, I was feeling fairly vulnerable about the possibility of being a young widow. But I took my cues from Howard and decided that I would put a positive spin on the situation even though my thoughts were spinning out of control. As a nurse, I was looking ahead to what might come or happen and had a hard time living in the moment. When anyone asked me if he was going to die, I said, “Not today.”

He received his requisite six rounds of chemo, but the blood tests indicated it was not enough, so he had three more months of chemo. Luckily, he then went into remission for a little over a year after that first round. Howard ended up getting a total of seven rounds of chemo in the ensuing 20 years of his disease.

Now chemo can have a fun side.

We were at the Kennedy Center with good friends enjoying “Phantom of the Opera.” During intermission we decided to have some wine. Howard, not a true wine drinker, really liked white zinfandel. He was amazed at how awesome it was! He kept saying he needed the name of the wine, because it was incredible. Now anyone who drinks white zinfandel knows that they all pretty much taste the same. But he was determined to buy only that particular wine!

Chemo can and does affect taste buds. Howard hated cheese, so we were kind of hoping that that might change and maybe he would eventually like it. Never happened.

One day while I was running his chemo at home, one of my nurse friends was over and we were doing highlights in her hair. I remarked that I hoped that the chemo was in his bag and the hair dye was on her head or we were in big trouble! The only other thing that would’ve made that day better is if we were simultaneously baking cookies in that toxic kitchen.

Howard and I were luckier than most leukemia couples because in between treatments, when he was feeling strong, we were able to travel and do fun things. He was getting chemo on our 10th anniversary in 1994, so in December of that fifth year of living with leukemia, we celebrated after chemo with an amazing trip to Australia. It was so good to see him snorkeling for the very first time at the Great Barrier Reef.

We had to learn to make fun in between treatments. When you go for 20 years with a disease, you cannot let the disease control you—though at times it would try.

In October 2010, before Howard passed away, friends lent us their condo in Myrtle Beach, S.C., for a week away. It was comfortable and a relaxing place for Howard, as well as an opportunity for solitude and reflection for me.

We enjoyed the beach, going out to dinner, and just relaxing. One day on the beach I noticed a mole on my leg that did not seem that unusual, but decided to make an appointment with Howard’s skin doctor. She didn’t think it was anything serious, might be a basal cell growth in appearance. She took other spots on my back to test. Those all came out normal.

Then she told me that the one on my leg was melanoma.

Am I so special that I wouldn’t ever have a diagnosis of cancer? That wasn’t my attitude at all. I had had a breast biopsy that was benign and had the lump removed. But we had been through so much with Howard, it was more like I felt, “Are you kidding?!?” and not, “Why me?”

I was fortunate that it was contained. Two small surgeries removed the affected tissue. To this day, I remain melanoma-free, but it scared the both of us.

That Christmas I looked at my brother and thanked him for loving Howard and being close to him. He looked at me and asked why I was saying all this now. I told him that I felt that this was Howard’s last Christmas. I didn’t know why, it was just a feeling.

After the first of the year, Howard’s counts continued to fall. He had adverse reactions to any chemo they tried to give him. He continued to receive bimonthly transfusions of blood and platelets.

It got to the point at Dr. Robert’s office that we would go right into the scheduling person to set up the hospital for the transfusion while I was on the phone getting Dr. Robert to write the order! Two of the people in the office didn’t know us and didn’t want to do it without the order. I told them it was on its way. Sure enough, Dr Robert walked in and said with a chuckle, “Don’t you realize these two pretty much run their treatments?”

On May 18, 2011, we went in to see Dr. Robert. He examined Howard and felt his spleen. Howard never complained of pain, but during this exam he flinched. His spleen was enlarged and his platelet count was 15,000 at that point. The spleen helps to manufacture platelets and regenerates white blood cells to fight infection. It was holding everything in and not functioning. Dr. Robert set up a CAT scan of his spleen the next day and talked about doing radiation on the spleen to shrink it. Howard got the CAT scan the next day and went into the hospital outpatient on Friday for platelets.

We went home afterward and he was fairly tired, so he lay down for a nap.

A good friend of ours, also a nurse, came over to visit. While there, Howard called me upstairs. He was bleeding profusely from his nose and it would not stop. It was a total steady stream. Our friend drove us to the ER where we stayed until 4 a.m. when a room became available. They kept insisting that they wanted to get nasal x-rays and that pinching his nose a certain way would stop the bleeding. However, his platelets were dangerously low and nothing was going to stop the flow.

Dr. Robert was away for the weekend, but he kept in contact with me through texting. He also kept in contact with the doctor on call that weekend to follow through. Howard was given more platelets, but he was still running a high fever and was very diaphoretic. Howard had no appetite, and wasn’t in the mood for much company. I stayed with him and a couple of friends and my mom came by for a little, but he was not up to company.

Howard was very quiet and then we both started talking about our life. I asked him if he had done everything he wanted to do with his life.

He said: “I married you.”

I started to cry, and then caught myself. I wanted to be strong for my husband. So we spoke of the fun times we had and the things we did for each other.

The doctor on-call called me out to the hall after he had examined Howard and looked at his labs. He told me that Howard should consider signing a DNR (do not resuscitate) as things had changed and were not getting better and I had to get him to do this.

Well, Howard was of sound mind and I told him what the doctor said. I asked who he might wish to talk with and what his opinion was about all this. He wanted to wait to see Dr. Robert on Monday when he returned. I informed the on-call doctor and asked him to treat Howard accordingly—no DNR at this time.

The nurses were amazing as was the hospital’s dietary staff. Howard wasn’t in the mood to eat, though he tried so hard to. They kept trying to come up with foods that would appeal to him. Our dear friend brought in cut up strawberries and he devoured them. So the goal was to bring in more fruit, but he wasn’t quite in the mood for it and, actually, was too tired to swallow.

On Monday, we met with the radiation oncologist. They were going to try radiation on Howard’s enlarged spleen to decrease its size and, hopefully, increase platelet production. They would know if it worked almost immediately. The doctor was very kind, but only gave the procedure a 50/50 chance of success.

Dr. Robert came in a little bit later and sat down by Howard’s bed and held his hand. I was on the other side holding on to him as to not ever let him go. Dr. Robert told him the cells had changed and were reproducing even more rapidly. His hope with the radiation was to buy Howard more time, allow more production of platelets, and to decrease pain. But he also spoke to him about a DNR.

Howard at first was reluctant and wanted to wait and see. He reminded us that two years prior to this, we hadn’t know if he would survive being intubated. So he raised the questions, “What if we waited if he had to be intubated to see if it got any better or he came back?”

Dr. Robert told him that wouldn’t happen. If he went down, there wasn’t coming back this time. Howard turned to me to ask my opinion.

I looked at him and told him I wanted him to live forever. Then I told him that with the rapid changes in the white count it appeared to me that we had run out of options. I would do whatever he asked, but I also didn’t want him suffering and lingering. However, the final decision was his.

He told Dr. Robert he would sign the consent, but did not want to wear the band that denotes DNR or the sheet near his bed. Dr Robert and the nurses were completely respectful of this. We were all teary, but were looking to radiation in the morning with optimism that he would at least get some comfort and maybe a little turnaround in his counts.

I called his daughters and told them that the next day may be a really good time to come in. I felt he still had more time, but I didn’t want to have them take a chance and not be there. They all were going to adjust scheduling to be there to visit.

That night at about 10 p.m., he suggested I go home because he knew some bills had to be paid. I still was trying to find something for him to eat that he could easily swallow and we both came up with mashed potatoes. So I told him I would bring him some the next day and I would be there by 6 a.m. so I could be there when they took him to radiology.

He asked me to call when I got home. When I did, he said, “Bring me peas.”

“What?”

“Peas, they go great with mashed potatoes. Sleep well, my Debi Jo. I love you.”

“I love you too, Howard, and I’ll be there early.”

I got the peas out of the cabinet and put them on the counter so I wouldn’t forget. I slept on the sofa in the family room after paying some bills. At 4:10 a.m. the phone rang. I jumped up to get it and it was the nurse at the hospital. She said, “I called you an hour ago, but you didn’t answer. Your husband is gone, I’m so sorry.”

I jumped back, and screamed. When I looked at the phone, I saw the answering machine light blinking. I threw the phone down, grabbed the cell and ran out the door. I called my mom on the way and tore down 66. I don’t even remember parking the car. I ran through the hospital and got to his room where he looked as if he were sleeping.

On May 24, I kissed him good bye and wept as my heart broke.

Sandcastles.

Before Howard passed away, we talked about what we wanted done for his funeral, burial, etc. Both of us wanted to be cremated. Howard told me he wished his ashes to be with me for a year, then to do whatever I was comfortable with. As it turned out, it was a little over two years before a plan emerged on just the right thing to do.

After much soul-searching, I kept coming back to the beach. I knew if he was in the ocean, I would always be surrounded by him. The ocean and beach bring me peace and that is what I wanted for Howard.

His youngest daughter wanted to go with me so we decided to head to Rehoboth as Howard and I liked it there. As we were driving, she asked me what I planned to do.

I looked at her and said: “Absolutely no idea.”

I figured I had gotten the beach and ocean part thought out, but not the rest. She told me she had a dream the night before that we had built a sandcastle and put Howard’s ashes in the castle. Then the waves washed them away. I turned to her with tears in my eyes and said that was the most beautiful thing I had heard, and that’s what we were going to do.

Since we planned to do it at night, once we got to the beach we headed down to the ocean to sit and relax.

While there, I looked at her and said, “How do we know what is high tide and low tide?”

“No idea.”

So we wandered the beach and saw other castles. Maybe we’d tag onto those. We found a plastic shovel just lying around and decided we might use that as part of our castle building. We then headed up to the boardwalk to relax at a beach cafe before changing for dinner.

We ate a quiet supper together and enjoyed the beach and the peace that it brings.

We headed back to the room to retrieve Howard’s ashes. Karen got the shovel and a plastic cup she had grabbed from the restaurant to make the castle. When we got to the beach, I could see the water wasn’t coming up very far. Karen said that she would dig a ditch for the water to flow up if the waves didn’t reach our castle. No one else was on the beach and the sky was full of stars.

Karen started digging. I had music playing and was hugging the box with Howard’s ashes. It was quiet except for our music and there was no wind. I told her that I didn’t think I could put the ashes in the castle so she said she would be happy to do it. There were rose petals and some miniature dried rosebuds in the box as well. It was going to be hard to let go, but we all needed a place of peace.

The waves were not coming up to our sand castle at all. We really had started too far back. So she started another one closer to the water, but the waves only came to within a foot of our castle. She said she would dig a trench once she put the ashes in. Just as she dropped the last ash and petals into the castle, a big wave came up and embraced the castle and took it and Howard’s ashes out to sea; there was nothing left.

No other waves came close afterward as we stood there for a moment, each with our private thoughts.

Together, with tears and while hugging each other, we released three Chinese lanterns into the night sky and quietly watched them float away.

The next morning we got up to see the sunrise and went to the spot where we had placed the ashes the night before. A single pink rose bud had washed up on shore.

Karen looked at me. “Do you need any more signs that all is right?”

I said, “No.” And gazed out over the ocean.

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