Living With Leukemia (Leukaemia)
Leukemia: The Diary of a Husband
When you live with someone - a spouse, a child, a relative - who suffers with a chronic illness, such as leukemia, it is sometimes easy (or easier) to forget about time. The days roll into each other. Your focus is on them, and everything else around you seems peripheral and unimportant.
And so it was that time and life played a cruel trick on both myself and my wife, just three short years into our marriage. It was late 1990/early 1991 when my wife became ill. It would be only a few short months later when she would hear the words that would change both our lives: "I'm sorry. You have leukemia".
In the Beginning
It was just a normal day, but that day would change my life forever. I had arrived home from work before my wife, as I usually did. I was starting to prepare for our evening meal, when she too arrived home, but clutching her left leg. She was screaming in pain and collapsed on our dining room floor.
My first thoughts were that she had been involved in an accident. But through her tears she told me that she hadn't. I felt helpless. My wife had always been very fit and healthy, regularly taking part in sports, particularly cross country running. She sat there on the carpet for a while until the pain had subsided enough for her to stand. As the evening progressed, her leg began to feel better, but not entirely free of what seemed like an aching cramp.
I told her that she needed to get to the doctor as soon as possible, just to make sure there wasn't more to the pain than just a strain or spasm. The next day, the pain was still there, so she decided to make an appointment.
This is when her nightmare began. Blood tests were ordered, as the doctor could not make a diagnosis in his office. It was obviously not a simple strain. The next day she received a phone call from the doctor telling her she needed to visit the hospital in order to have her leg scanned. Although she was finding it harder to walk, I managed to get her to the hospital...and then we just waited.
We waited for what seemed an eternity for the results from the blood tests and the scan. Eventually, they came. The scan showed that my wife had an overly large abscess in her thigh, deep in the muscle tissue. As a result, her white blood count was sky high as her body tried to fight off this painful and unwelcome intruder. She had also contracted a condition called Aplastic Anemia, where the bone marrow does not replenish blood cells correctly.
To say we were both shocked would be an understatement. But life never prepares you for this kind of news. We really did not have a lot of time to digest the information before my wife was admitted to the hospital for treatment of both illnesses.
The Hospital Stay
The Leukemia Develops
At the beginning of May, 1991 my wife began a hospital stay that would last seven months. The abscess in her leg had enlarged, and it was now critical to have it drained and removed. She went into surgery, and the next time I saw her she was lying in bed with her thigh heavily bandaged and unable to move.
But, more bad news was on the horizon. The doctor dealing with her Aplastic Anemia wanted to see me urgently. Fearing the worst, I met with him and he explained that her blood condition had deteriorated and had now developed into leukemia. I was stunned. My mind was in a haze. To make matters worse, they could only undertake minimal treatment because of the surgery to her leg.
From that point on our lives changed forever. Over the next few days the bandages around my wife's thigh were slowly removed to allow the beginning of the healing process. However, her blood condition was preventing the large wound from repairing quickly, and she began to develop several smaller abscesses on her back. These were also drained and then treated daily along with her thigh.
To try to explain how one's mind works through this kind of real life drama is not easy. It is almost as if you are put on autopilot. My wife was getting the best treatment, but I felt helpless in her plight. I knew she had a lot of strength, both mentally and physically, but the news of her illness and her surgery was sometimes too much for her to bear. My only way of helping was to be with her as often as possible and to encourage her in any way I could.
And encouragement is what I offered, along with all the love I could muster. Encouragement and love during the good times when a few more centimetres of that gaping wound healed. Encouragement and love during the bad times when her tears flowed and anger coursed through her body. "Why Me?"
A Private Moment
A Very Special Song
As time went by, my wife's thigh wound healed at an excruciatingly slow pace. Eventually, it had healed enough to allow her to sit up and dangle her legs over the side of the bed.
One evening, I arrived at the hospital and headed for her room as usual. As I reached the doorway, my wife's back was to me as she sat watching the television. As I stood and looked for a moment, I heard her crying. She was listening to the following song on video, which was very popular at the time, just sobbing her heart out.
I remained at the doorway, listening intently to the words of the song, not daring to enter the room, feeling as if I was intruding on a private moment. It was heartbreaking to watch.
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Home For Christmas
Those eight months seemed to last a lifetime. But, little by little, her leg improved.
One evening, not long before Christmas, I made my way to the hospital after work as I normally did. Imagine my utter surprise when I rounded the corner to her room and found her standing there facing me. I had to take a step back, just in case I was imagining things. Admittedly, she was propping herself up on a walking stick due to her lack of strength, but this was the best Christmas present I could have hoped for.
A couple of weeks passed, and we received the news that she could go home. Her leg was now strong enough to allow her to walk. She would be home for Christmas.
This battle was over, but she had not yet won the war.
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Battling the Leukemia
A Bone Marrow Transplant
In the interim, the doctors had discovered that my wife's leukemia had worsened. As a consequence, she now had to undergo more aggressive treatment in the form of chemotherapy and regular blood transfusions.
As anyone who has undergone chemotherapy will know, the effects of this can often be more debilitating than the disease that is being treated. One sad consequence was that my wife lost her beautiful hair. And any woman will tell you how shattering this is to one's self-esteem. It got to the point where she would not leave the house for some time, as she felt she was the object of people's stares. In the end, I and our families bought some fashionable hats for her, and some normality returned to her life.
Months passed with the continuing treatment and, to a certain extent, our daily routine returned to some kind of ordered structure. Continuing hospital visits occurred, in between which my wife was able to visit friends and family. I had been very lucky to have a wonderfully understanding employer who allowed me to take time away as and when it was absolutely necessary.
As time went by, the doctors became concerned that while the chemo and blood transfusions were holding the leukemia at bay, they were not having the desired result of remission. It was at this point that we were given what amounted to an ultimatum: continue the present treatment with the high chance that the leukemia would worsen or undergo a bone marrow transplant with a 70% chance of a full recovery.
In my mind, there really was no option. However, my wife was more hesitant about a bone marrow transplant, having learnt about the pain and the dangers the process could potentially create. This option also hinged upon whether a suitable bone marrow donor could be found. As my wife was an only child, finding someone was going to more difficult than if she had siblings. We talked at length, and after some painful conversations, we both decided that this was really the only way to go.
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National Marrow Donor Program
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The Bone Marrow Transplant
Battling Acute Myeloid Leukemia
We were told from the very beginning of my wife's diagnosis that it would be tough to treat. Her leukemia was not a usual strain seen at her age. She had Acute Myeloid Leukemia, which was normally found in patients of more advanced years.
Since we had gone ahead with the decision of a bone marrow transplant, her usual treatment went on as normal, as we waited for a donor to come along. The doctors had informed us that it could be a long time before one was found. And so it proved. Months passed as the experts scanned the bone marrow registries, looking for a suitable match, but to no avail.
Then, in late 1993, news came that one had been located. The sense of relief in our house was palpable. Sheer joy could not fully describe our feelings. More tests were required from both my wife and the donor, but everything looked good for the transplant to go ahead.
We travelled to London, where once again, my wife was admitted to the hospital. This time she would have to go onto an isolation ward, with only myself able to enter her room for short periods. She was to undergo intensive chemotherapy to begin with, which would intentionally reduce her immune system. This had to be done so that the transplanted bone marrow would not be rejected.
The transplant took place. A precious bag of bone marrow flowed slowly into my wife's body, and with it a stream of hope for life.
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The British Bone Marrow Registry
After the Bone Marrow Transplant
Awaiting the Results
Considering the enormity of what had just happened, my wife's stay in hospital was relatively short. Her immune system had returned to normal fairly quickly, and she was allowed to go home. Now, we had to wait once again. This time to find out whether the bone marrow transplant had taken.
We knew it would take some time to find out the result, but the wait was excruciating as the days went by. Finally, we received a call, but it was not the news we were hoping for. The transplant had failed and the leukemia had returned. We were devastated. Consoling my wife was one of the hardest things I have ever tried to do.
I wanted to know the options. I was told that the only way to continue this battle was to find another bone marrow donor. But, this time, there would only be a 30% chance of conquering the disease. At this point, anything the doctors could offer was something we had to grab with both hands. Once again, our lives became a waiting game.
April 20, 1994
The Leukemia Diary is Tragically Closed
A couple of months passed and although regular updates came from the doctors, no new donor had yet been found. My wife continued with her treatments, but as each day went by, the more anxious we became. In this case, the old adage "no news is good news" just didn't apply.
During April, 1994, my wife contracted a cold - something that most of us can fight off with ease. For her, it was more serious. All of the treatments had weakened her system and the cold went to her lungs. As a precautionary measure, she was admitted to the hospital for continuing observation. However, her body was finding it more difficult to cope with any kind of added problems, and the situation became worse.
On April 20, I was at the hospital visiting with her as normal. She seemed okay, but as the afternoon progressed, she gradually began acting strangely. She started saying things that did not make sense, and was regularly in and out of sleep. She was beginning to scare me, and I called a nurse to check on her. She told me that the drugs she was taking could sometimes cause this reaction.
She put my mind at rest to a certain extent, but I was still worried. As she was sleeping, I decided to take a break and go and get some air. As I stood outside reflecting on the day so far, I ran into our best friend's parents. My mind was such a haze that I assumed they were there to visit my wife. As we chatted, I found out that they were visiting their daughter, who had just given birth to her second baby. I had completely forgotten that she was pregnant, with everything that had been happening.
As I returned to her floor, my mother, brother and her parents arrived and we all went into her room together. She was still sleeping, but we were shocked to see how pale she had become. Once again, I called in a nurse and she said she would get a doctor to visit. As we waited, my wife came in and out sleep, but she was worrying me more than ever.
A doctor eventually arrived and examined her, but just by the look on his face, things did not look good. He pulled me aside and told me to expect the worst. Her condition had deteriorated to such an extent that very little could be done to pull her out of her present state. I didn't know what to do with myself. I, now, had to go and repeat to the parents what was going on. We all stood looking at one another in a state of shock.
As the evening went by, we kept vigil in her room. The doctors could not give any more certain information, but they advised us to go home and get some rest. I didn't want to go, but over the previous few days, I had not slept well. Her parents had left earlier, saying they would return, and my mother convinced me to take a break. We went to my brother's house, but not ten minutes after arriving, the hospital called saying we should go back as soon as possible.
Some of what followed is a little hazy, as my mind switched off. In the time it had taken us to drive from home to the hospital, my wife had died. I remember holding her like I never wanted to let her go, and telling her how much I loved her. I remember my father-in-law standing in the room in disbelief, moving to the window, looking out and sobbing. I remember having to let her go...forever.
She was thirty-years-old, and this isn't the way things were meant to happen.
I couldn't remember ever seeing the crematorium this full. I had attended some funerals in the past, but I had never known there to be so many people as there was that day. It was overwhelming, and one of the saddest days of my life.
One of the most important things for me to arrange was the correct prayers, hymns and music for my young wife's funeral. I recalled the Bryan Adams video that she was watching in the hospital, and as her coffin entered the crematorium, this is the song that played.
She was also a big Elton John fan, and I tried to find the most appropriate track to play as the service ended. This is the one I chose.
An Important Footnote
A Silver Lining
Since I published this page, it has dawned on me that I had forgotten to add some important information.
Earlier, I mentioned that I had met our best friend's parents at the hospital. Not until later did I discover that our friend had given birth to a beautiful baby girl on the same day that my wife had died. She later became my goddaughter. She is now a happy, healthy and radiant 20-year-old.
Secondly, in a strange irony, I met and married my present wife because of these events. After my first wife's death, I became involved with a local branch of The Anthony Nolan Fund, trying to raise funds and awareness about bone marrow donation. As Treasurer, I decided to buy my first computer to keep track of the monies. I had never been on the Internet before, but one day, I inadvertently happened upon a chat room on MSN. There was a group of people there from all walks of life, who made me laugh and smile again.
To cut a long story short, my present wife began talking to me about my first wife's illness. We corresponded for seventeen months, she in the US, I in the UK. I was due a vacation, so we decided that I should take a trip to America and meet. After several flights across the Atlantic by both of us, we knew we had fallen in love. In May of 2000, I proposed to her on the sands of Myrtle Beach, SC and we married two months later. We will celebrate ten years of our love later this year.
I have really come to believe the old saying that "every cloud has a silver lining".
Thank you for reading my story. My heartfelt hope is that one day this dreadful disease will be defeated. To help bring that day closer, a percentage of the royalties from this page are to be donated to the Lymphoma and Leukemia Fund. The remaining percentage will be donated to my chosen leukemia charity.I want to thank each and everyone of you who have left such generous and supportive comments. I am truly appreciative of your visits here.