Leukemia

1990

 

It was a balmy night in March, boasting a full moon. You would have thought it was perfect for fishing, but they just weren't biting. We had been sitting on Newport Beach for over four hours, and we couldn't lose our bait.  On a normal night, there would have been at least some crabs or tiddlers to clean out our hooks and make it necessary to put on some fresh bait, but this time it stayed on. I was there with two fishing buddies, sharing a little conversation and a lot of frustration.

I moved away from the others, onto a concrete stormwater outlet, where I sat myself down on a bucket, to have a good moan to the Lord.  I cast the unlosable bait one more time into the briny ocean and started complaining. "Lord", I prayed, if you could call my whinge a prayer, "I have come to the end of myself. My marriage is on the rocks.  My kids are giving me hell. I hate my job. I am utterly exhausted, all of the time.  I can't see a way out.  And now I can't even get a fish to bite! You said in your Word, that You had come that we might have life, and have it more abundantly. Did You mean in the hereafter, or in the here and now?"


As the word 'now' came out of my mouth, my reel started screaming, with line being torn off into the depths. As any devoted fisherman knows, when your reel starts spinning, nothing else matters.  You forget whatever problems may have bugged you seconds ago, and bringing in that fish becomes the centre of the universe.  It took twenty minutes of exhilarating battle to bring in the biggest fish I had ever caught (up until that time), a 14 pound mulloway!  When the fish was securely on the sand, the import of the event finally sank in. It was probably the most instantaneous answer to prayer I have ever had. If the fish had bitten minutes earlier, I wouldn't have prayed what I did. If it had bitten five minutes later, the answer wouldn't have been as clear.  As it was, I left the beach that night, convinced we were to live life more abundantly in the here and now! You can imagine my confusion, when a couple of months later, I was told that I was dying.
 

I caught a bug and couldn't shake it.  Two courses of antibiotics couldn't seem to get rid of it. My local GP was equally surprised it lasted this long. (Of course, we're all more aware now that antibiotics only treat an infection, not the virus itself.) He asked whether there were any other things bothering me and I happened to mention I had lost a lot of weight, without really trying. I had gone from thirteen and a half stone (85 kg) to twelve (75 kg).  He ordered blood tests. It took a month to come up with a diagnosis: 'Philadelphia negative, chronic myeloid leukaemia'.  I had 11 times the normal level of eosinophils and basophils in my blood stream. These white cells were at such a level, their toxicity could bring on a heart attack. The 'Philadelphia negative' bit referred to the fact that chronic myeloid leukemia was usually evidenced by the transfer of some DNA from chromosome 22 to chromosome 9 - the Philadelphia chromosome - something that was not present in me.  My GP was reluctant to call my condition leukaemia, and kept referring to it as a 'blood disorder'.  I had to literally drag the 'call a spade a spade ' terminology out of him.


My first reaction to the news was, "What a good way out!"  I was ready to leave all my troubles behind and go to be with my Lord.  My second thought, legalistically religious as it might have been, was, "I haven't yet committed a 'major sin'!" And all this time I had thought of myself as unreligious and free from the bondage of ritual. Yet the classification of sin into minor and major categories obviously still ruled in my thinking.  I never at any time contemplated, 'Why me?'

The Public Service allowed me to use up all my accrued sick leave, long service leave, and recreation leave. When the leave ran out, they retired me on my superannuation, saying simply and coldly that they understood I was no longer able to perform my duties.

It was 1990. In the five years since another GP had first detected an increased level of eosinophils, several big breakthroughs had been made in the treatment of leukemia.  Treatment involves a bone marrow transplant from a tissue type compatible donor.  So if you are fortunate enough to find a suitable donor, you have to undergo intensive radiation and chemotherapy, to kill off any blood-producing stem cells in your body. Most of those stem cells reside in the bone marrow. This is followed by the transplant of a small seeding of new bone marrow containing compatible stem cells, administered like a normal blood transfusion. Apparently the stem cells then find their own way back into the recipient's marrow, and start multiplying to create a new blood producing system.  Transplant patients would die from three major causes:

 

  • Complications, such as pneumonia,
  • Rejection of the transplant, (called graft-versus-host disease, as it is the new system rejecting your body, instead of the other way around),
  • Leukemia returning.
     

The breakthroughs related to 1 and 2.  To treat the complications, several new anti-viral antibiotics had been developed, aciclovir and ganciclovir.  To treat the rejection, cyclosporin had been developed, an immune suppressant.  So they had only just started doing transplants on people over forty, who, before these breakthroughs, invariably died.  I was forty-two.  Had I been diagnosed at 37, it is very possible I may not have made it, except of course for the 'God factor'.

Normally, I was told by my specialist, I would have a 75% chance of 5 year survival, providing I had a sibling donor, was under forty, and had been diagnosed in the 'chronic' phase of the disease. My chances were down to 15%, as I was over forty and caught in the 'accelerated' phase.  Without a transplant, I would be dead in less than a year and a half.

I went through an incredible faith struggle. As the reality of death stared me in the face, something primal in the depth of my being stirred, whispering insistently that I wasn't ready to die.  Another part of me was quite willing to forego any further agony this world could dish out. I knew all the scriptures about healing, but shaking my fist at God, saying He must heal me, didn't quite seem appropriate. Every man and his dog seemed to have an opinion as to why I was going through this, or how to deal with it.  I must find the faith to believe for healing, some said.  Others asked what major sin I had committed, for God to punish me this way.  Others still reckoned a change of diet would fix me.  The Pritikin diet managed to take off another half stone, before I found out Dr. Pritikin committed suicide when he found out he had leukemia. Straight away I started dieting on Mars bars, trying to put the weight back on, aware of how much more weight would be lost during my hospitalisation.  Did Jesus really die for both my sin and my sicknesses? I attended a service by a recognised preacher with a 'healing ministry', visiting from the USA. The Lord revealed to him people with sore toes and bad backs in rows 27, 56 and 62, but He forgot to tell him about the man dying of leukemia in row 48. When the preacher announced he could sense the 'aroma of the Lord' was about to hit the hall, followed by a perfume obviously added to the air conditioning system, I was ready to leave.  

I agonised over so many different issues and questions, but I had no answers, and I finally gave up trying to work it out and handed the whole thing over to Him.  I genuinely told Him, "Lord, I am happy with whatever You decide.  If You want me to come to You now, it is OK by me.  And if You want me to hang around a little longer, that's fine also." It was this total surrender that brought the breakthrough.  The moment I handed it over, a little light went on inside my head, and I knew I was going to make it! It was a surrender so complete, that, had He changed His mind halfway through my hospital stay, it would have been fine.  It was complete surrender to His will that brought the 'gift of faith'. There was no need to grind my teeth and squint my eyes and clench my fists, in a desperate effort to conjure up the faith for healing.  The gift of faith brought peace.

In August, I went into hospital with a smile on my face, telling jokes to the doctors and nurses.  My elder sister turned out to be 100% compatible as a donor.  I was part of a clinical study, comprising maybe two dozen patients, all of whom had a better statistical chance of survival than I did, having been diagnosed earlier in the progress of the disease, and being younger.  We all received a slightly different treatment, to see what worked the best.  When the nurses became depressed around some of the other patients in isolation wards, they would come into my room and ask me to tell a joke.

One of the first things they needed to do was install a 'Hickman's catheter' to take the numerous blood samples required over the period in hospital and facilitate the administration of so many drugs. It was to go into my chest left of my nipple, over my collar bone, then down directly into a major blood vessel. It had a Teflon neck, which human skin supposedly can't differentiate, so it grows onto it.  It required total anaesthesia.  I remember that weird feeling as I was told to count down to ten, lying on a trolley, looking up at the ceiling.  I thought, "This isn't working!"  And the ceiling changed.  Somewhere in the middle of that sentence, I had had the operation and was now in the recovery room!  I think experiencing death must be very similar.  Time doesn't exist on the other side. So I think it is possible that, when we die, the first thing we are aware of after dying is that great moment when the Lord comes back! 

The Lord sat beside my bed and held my hand the whole five weeks I was in there. I went in at twelve stone (about 76 kg) and came out at ten and a half (67 kg).  Three days after the chemo and radiation, all my hair fell out.  I had tried pulling my hair in the shower the previous day and thought maybe the Lord had worked a miracle, as it was still secure. But no, it wasn't. At that point, you are as good as dead, having no system to produce red blood cells to carry oxygen, no white cells to fight infection, and no platelets to cause the blood to clot. A new system had to grow from the donor cells.  That's why they had isolation wards, and visitors had to wear gowns and masks.  I was on 30 mg of morphine, but I can't remember what pain it was intended to treat. For three weeks I was sustained by a drip feed, unable to take anything by mouth, dry retching with unbelievable nausea, even though there was nothing in my stomach. I told one nurse it was OK, because I was a Christian. She said she knew, because the previous day, with some four other nurses present, I had been shaking uncontrollably, a reaction to something they had given me.  I had apparently looked at her and told her the Lord was with me.  And then the shaking stopped and I turned over to sleep!  

One day a so-called 'support group' of transplant survivors arrived. One guy, who looked like death warmed up, told us we must come to terms with dying. He upset a number of patients, who stormed out of the meeting in tears. I consoled one of them and prayed with her, and she accepted the Lord as her Saviour. 

Another day, I held my pillows while the nurses changed my bed linen.  A bit of tape holding the Hickman's catheter stuck to one of the pillows and tore out the Hickman's. It seems my skin hadn't yet grown onto its Teflon neck.  It couldn't be put back, as it risked fatal infection, so from then on they had to keep finding new places to puncture me, to take all those samples and put in drugs and drips. Each new place was only good for a couple of days, so they went in both arms and neck, until I felt like a pin cushion. 

I came out of hospital, too weak to walk up to the road to check the mail. It took a year before I was strong enough to go fishing again. But the Lord was faithful to the message He had given me when I caught that first mulloway.  He confirmed it by letting me catch an even bigger one, another mulloway, this time 28 pounds!

We are to have life and have it more abundantly, here and now.  It is only our interpretation of what that really means that often is at odds with His plan for our lives.  When I left the hospital, I remember thinking I could never go through this again. If the leukemia returned, the Lord would just have to perform a miracle healing. Or take me.  But the memory of suffering leaves so quickly. Right now, I cannot recall just why it was so awful, and were I diagnosed with leukemia again, who knows?

In 1992, my mother was diagnosed with multiple myeloma, or bone cancer.  She was admitted to another hospital, however a young female doctor, who had been at my hospital when I had my transplant, had transferred there. She walked past my mother's bed and recognised the surname. She remembered me and let it slip out that the reason she remembered, was that I had been the only one to survive that clinical trial! Later I went to see her, and she confirmed my sole survivor status, but stressed that the information should never have been disclosed.  

Many could argue that, technically, I did not receive a miraculous healing.  I would argue that it was a miracle that my sister was 100% compatible, a determination made a year before I was even conceived! So many leukemia sufferers can't find a suitable donor.  I would argue that it was a miracle that, of all those patients, I, who had the least chance, was the only one to survive!

Having been a telephone counsellor for a number of years, I know more than most about the hardships some people suffer.  The stories I could tell, but which must remain confidential, would blow your mind. I have 'only' had a marriage breakdown and leukemia.  I consider myself blessed to have had such an easy journey.

 

WHAT HAVE I LEARNED FROM ALL THIS?
 

  • God is not into 'punishing' His children, by striking them with fatal illnesses. However, He will use the incidence of illness to draw us closer to Himself.
  • Sometimes He heals miraculously. Sometimes He uses the medical profession.  Sometimes, in His wisdom, He doesn't heal at all. The choice is His, not ours.
  • We are being prepared for a much greater purpose than personal fulfillment, health, success and happiness.
  • We all have a path to tread, to get to that place where we are 'just right' to serve as our part of the eternal bride for Jesus.
  • Because we are all different, we all have a different path to travel.
  • For some of us, the path holds much suffering. For others, it seems it is an easy stroll. It doesn't seem 'fair', but we are here for such a short time, surely the eternal purpose takes precedence.
  • The greatest lesson of all, is that God wants us to surrender to His will, far more so, than us insisting that He act in accordance with our interpretation of His Word.  Jesus did.  And we should.  He will never force us to submit, but when we do, from our own freewill choice, He is sure to come through for us in accordance with His will.
  • We are to have life and have it more abundantly, here and now.  It is only our interpretation of what that really means that often is at odds with His plan for our lives.