Voila - Here It Is!

A hospital bed, that is. Yes, the bed that disappeared on Friday has now reappeared. Paul and I quickly went to the hospital this morning to claim it and I brought my chain and handcuffs, just in case (just kidding!) However, due to staffing shortage on the weekends (today being Sunday), his actual treatment will not start until Monday.

It still seems so surreal, all that has happened and is happening. Can it be that life has changed so much in 3 weeks?

A phone call from my cousin in Oregon who thinks that Paul and I are "brave". I tell her that I'm not brave, just human and full of as much fear as the next person. But, God has given us (Paul more so than me) supernatural peace about this situation. At times my faith wavers and hangs by a thread, but it is the faith of our friends and family that sustains us through this trial. Our faith in a God who is real and does answer prayers. A time of testing of this faith - is it genuine or fake?

"Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing." (James 1:2-4)

From Where Does My Help Come From?

"I lift my eyes to the hills - where does my help come from?
My help comes from the LORD, the Maker of heaven and earth."
Psalm 121:1,2

As I reflect on the events of the past three weeks (it's been 3 weeks since diagnosis), I again realize that ultimately our fate is in the hands of our God. Even if Paul receives his treatment (whenever that may be), the healing will be through His Hands. Even the length of Paul's remaining days on earth are numbered by Him.

So, after all this flailing around and being angry, upset and frustrated, I am now resigned to just waiting patiently.

And that is just not like me.

The Human Face of Suffering

Note: this weblog begins May 7; you should begin reading there first

Ultimately, my anger is directed at the politicians who make the decisions regarding healthcare, including budgets. Their main concern is number-crunching without consideration of the cost of human suffering. Dollars saved and dollars spent. But, not a word of sympathy to those who must suffer the results of political machinations.

Yes, it is a waiting game, as our lives are put on hold. My shifts switched around and around. Telling everyone "yes/no/maybe so" Paul has a bed. Poor Janelle is carted to and from the hospital as I drive Paul back and forth. How can she understand that sometimes there isn't enough time to just play with her? The boys don't completely understand why their father cannot get the treatment he needs. How do we answer these questions: "because there isn't enough money??" Because, the fact is that there is enough money, but it's being squandered on boondoggles like Fast Cat ferries.

Mr. Hansen, look into the face of a man who is slowly dying and tell him why it is that your government is unable to fix a medical system in shambles. Are you willing to tell 3 children that they will be fatherless because of "lack of money"?

Be Still and Know That I Am God

In the midst of all these turbulent events and emotions, I somehow can laugh at the utter ridiculousness of it all. I mean, even comedy writers couldn't come up with more bizarre scenarios! Paul's off-beat, sardonic wit and Janelle's discovery of language (she now can say two word sentences like "Mama sit") also keep my spirits up.

"Be still and know that I am God." Psalm 46:10

This verse repeatedly comes to my mind as adversity piles upon adversity. What is God trying to say to me in all this and how is He working? It's hard to accept the wrongness of all around me and know that somehow God is in control. I sure would hate to see when He isn't in control.

I have to remember: "He will have no fear of bad news; his heart is steadfast, trusting in the LORD." Psalm 112:7 (a verse that my Burlington friend, Becky, shared with me) I am learning slowly to trust in God more and more and to be more patient with His ways as well. It is all too evident that Paul's healing is ultimately with Him and not with the pathetic medical system we have in Canada.

Now You See It, Now You Don't

The phone call came at 11:30 am to Paul that he was going to be admitted to the hospital and to come in at 2:00 pm. After doing all the paperwork and going up to the ward, we were admiring the beautiful view of the room, when Dr. Forrest and her resident marched into the room.

"Mr. Sue, I have bad news and good news. The bad news is that you are being discharged now because another patient is taking your bed...." That's about all I heard because my blood pressure was about to burst. She made some lame apology but certainly didn't show any signs of sympathy about our situation. Basically, it was "Get out - my patient is taking your bed. Maybe you'll get tomorrow, maybe you won't. Maybe Sunday. Maybe Monday. Maybe. Maybe."

Unfortunately, it didn't come to our minds to chain Paul to the hospital and call the media to film the security guards taking him away in vehement protest, as a friend later suggested we do.

We made our way home. Went to the local MLA, Colin Hansen's office which is a couple blocks away from our house to meet him. Incidentally, he is the Minister of Health of our province. Of course, he didn't have the courtesy to return my phone call from yesterday and his office assistant informed me that Mr. Hansen was on his way to Toronto. OK - that was it - I let loose and vented my pent-up frustration on this poor lackey. His feeble comebacks were more than I could bear.

Went home and had a beer (well, in my case, I hate beer so I had an organic pop instead.)

The disappearing hospital bed.....

Reassurance

Note: this saga began on May 7; you should begin reading there first

In our quest for gathering as much information as possible, we contact Dr. Neal Young, a world-renowned expert in the field, whose name we garnered from the medical journals. I also call Dr. Mant, who ironically is the very same hematologist that I mentioned in an earlier post, The Terrible Three (May 7). Both are reassuring that the immunosuppressant therapy is probably the way to go given Paul's age, etc. but that BMT is a possibility.

Ironically, we get more information and reassurance from these two out-of-town top-notch hematologists than from our own local one. Just the reality of the over-worked physicians in our BC healthcare system.

There is No Room for Doubt

There is no room for doubt by patients about the medical profession. To do so and to question any therapy recommended or even act if one had any suspicions of questioning the staffs' competency, is tantamount to treason and quickly quashed down. Nurses and receptionists become short with you as you gain a reputation as a "trouble-maker" or someone who is not conforming to the ideal patient who is compliant, non-questioning and brings the staff goodies. Obtaining lab test results for a second opinion brings with it irritation by the clerical staff who state, "I need to clarify this with the doctor first." Whose information is this anyways??

After we spoke to another middle-aged male who received a successful bone marrow transplant as first line treatment without even consideration of immunosuppressants, clouds of doubt begin to gather about whether drugs should be Paul's choice of treatment. And still not a hospital bed in sight. As I watch Paul slowly dwindle and his stem cells steadily dying off, I become angry at the very system I am a part of. I remember my moments of irritation with patients and their families who seem to ask too many questions. I have become one of them.

Alternative Medicine US Style

In my desperation to get a hospital bed for Paul, I decide to contact the US for an opinion. A colleague at work suggests the Fred Hutchinson Cancer Center (US spelling!) in Seattle, Washington and I call on the Monday, May 24. The call is returned today as yesterday was "Memorial Day" there.

The woman on the telephone is very professional and helpful. She advises me that a one-day consultation with one of their MD's would be $550 USD. If one proceeds to bone marrow transplant with a compatible sibling, the cost would be $280,000 USD deposit up front. Cost probably higher. If a search was necessary, it would be $50,000 up front to start the search, and if a match was found, then another $318,000 deposit to begin treatment.

I thank her profusely for her time and her information and tell her that I will discuss it with my husband and get back to her.

I think she can sense that this is just not an option for us.

I turn my thoughts back to the Canadian healthcare system and resign myself to just waiting.

Rage Against the Machine

Note: this saga began on May 7; you should begin reading there first

That's what I feel about our Canadian healthcare system. Paul is still waiting for a hospital bed and despite being told that he might get one tomorrow, it isn't happening because other "more urgent" cases are being admitted. What does it take for Paul to be considered "urgent" - a hemorrhage or overwhelming sepsis?

The Canadian healthcare system is ridiculous in its attempt to provide "universal" healthcare to everyone. It condemns everyone to the same mediocre standard of care and prevents anyone who wants to pay extra from doing so unless they leave the country. One is free to spend $7000 on cigarettes, alcohol, drugs and generally abuse their bodies, but forbidden to spend this same money on one's own health. How draconian is that??

Paul has been waiting for a bed for two weeks now - and his counts are dropping. His hemoglobin is now 85 and I can see him fading in front of my eyes. I feel angry that I cannot access the healthcare that he needs because of "universal" healthcare. That my tax dollars are paying for a system that has inhumane waiting lists.

Rage against the machine - the dinosaur Canadian healthcare system. That's what I feel.

God Speaks through His People

God's amazing love is manifested by our Burlington and Seattle, Washington friends who drive to our house today to pray with and for Paul. I am moved and touched by their efforts to support Paul in such an important and tangible way. I don't expect people to come to Vancouver, but the fact that they have made time in their busy lives to do such a significant thing touches my heart. We cherish their fellowship.

Yes, this is the Body of Christ manifesting God's love.

But, these gifts of love aren't just confined to our Christian friends and family, but also received from many of our friends around the world. Others have done unexpected and thoughtful things - a fruit basket arrived at our home shortly after Paul's news was emailed out, a card from a cousin and his wife in Calgary, CD's from a friend, long distance calls from Hong Kong and Australia, the many emails sent out with words of encouragement and just telling us that people were praying. Many offers of help for food, child care, errand running, chores - we are truly blessed by so many friends.

And I recall Paul telling me not so long ago that we needed more friends because we didn't have any. I totally disagreed with him but he wouldn't believe me. Now, the proof is in the pudding isn't it?

A Season for Everything

Life has a season for everything and God has a reason for everything. My faith is being stretched daily to depend on Him more and more. Being a self-sufficient, independent, fairly competent person, it is even more humbling to be in a position of utter helplessness and dependence.

But, I trust that this situation is being used in a mighty and glorious way for God. I don't question "why" anymore, but rather "what next, Lord?" It's not an easy position for me to be in, but necessary.

Otherwise, I will crack.

This is definitely the winter season of our lives.

Verses come to my mind:

Greater love has no one than this, that one lay down his life for his friends. (John 15:13)
I would gladly give up my life for Paul's. However, even much more so, Christ gave up His life for mine. And I deserve it even less as a sinner.

If you ask Me anything in My name, I will do it. (John 14:14)

If you then being evil, know how to give good gifts to your children, how much more shall your Father who is in heaven give what is good to those who ask Him! (Matt. 7:11)
I can only ask God for sparing Paul's life and being merciful to us. How He answers will be up to Him but I will try to accept whatever comes of this situation.

My Father, if it is possible, let this cup pass from Me; yet not as I will, but as Thou wilt. (Matt. 26:39)
Oh God, if only this trial could pass from us, that Paul wouldn't have to be ill. But, I must also accept what is Your will, not mine. This is hard enough for me, but so much more for the children.

What a Difference Twenty Years Makes

1983 - the year that clinical trials showed significant benefit of antithymocyte globulin in patients with aplastic anemia. 1983 - the year that Anita died.

As Paul and I do more reading of the medical literature (from articles quickly and kindly provided by the Medical Library from the College of Physicians and Surgeons), we feel discouraged by all the stats but encouraged that the immunosuppressant therapy seems to be the choice of treatment.

Now in 2004, at least there is some hope for "remission" from this devastating disease.

What a difference twenty years makes. And we are encouraged by speaking to a woman who was diagnosed with aplastic anemia 17 years ago. And she is a Christian! OK, God - is twenty years survival possible?

Life's a Blur

The past week is a whirlwind of activities with mundane things like fixing our basement floor previously water-damaged, trying to rearrange my work schedule, etc. Life returns to a semblance of "normal"; even the boys are back to their regular fighting. Janelle is regressing with her toilet training. Paul continues to work from home. Often, I feel as if things are surreal and that I will soon wake up from this frightful nightmare. Nevertheless, as I recover from my initial shock, I am more in a "fighting forward" mood trying to obtain as much information as I can for Paul.

We call the Aplastic Anemia and Myelodysplasia Society and our hematologist to obtain names of AA survivors. We are encouraged by their stories, a stark contrast to the medical papers we've began reading, with the dry and discouraging statistics.

I hand over the reins of the BC Stepparents Association to my two colleagues, Beth and Heather, relieved that these two ladies will do a great job in my absence.

I gather more strength to meet the days ahead.

Prayer For Paul

Emails flood in from around the world in response to our news. Prayers are being said round the clock. We are overwhelmed by the responses.

I pray for a miraculous healing because so many people put their faith in medical science to heal Paul, focusing on the "80% success". But what does "success" really mean? It doesn't mean that Paul has full normal health. It just means that he "responded". It means that he has a chronic life-long illness that can recur at any moment. It means that the immunosuppressant therapy (which he may or may not have to take for the rest of his life) predisposes him to other malignancies, including cancer. His aplastic anemia can morph into other more serious blood disorders. So I realize that I desire Paul's healing not through medical science, but from the Almightly God's power, i.e. a true miracle. That would really blow people's minds and really show who God is. That God is mightier than medical science.

Two good friends pray with us that evening to bring before God our petitions and prayers for Paul's healing. His spiritual past is examined and healing prayed for.

That's where my faith lies in: God, not medical science.

Everyone Knows

We arrange to have an urgent family meeting with Paul's siblings and his parents. The siblings have been told the news over the telephone, but we want to tell his parents the news in person.

We arrive and although she acts normally, I suspect that my mother-in-law already knows. I note her ever-so-slightly swollen eyes. But, how does she know? My mind flashes to an email we received from Paul's uncle earlier that morning. News travels fast - too fast.

After dinner, we tell them that Paul is ill with a blood disorder. My mother-in-law tells us that she had received a phone call from her sister (Paul's aunt) already that morning inquiring about Paul. I am a bit annoyed inside because we wanted to be the ones to tell Paul's parents. Although we are thankful that Paul's older uncle had agreed to join us at my in-laws later that evening to help translate (as our Chinese is not that good), the cat was already out of the bag.

I remain silent and allow him, now armed with his research from the Internet, to explain aplastic anemia to Paul's parents. Both take it hard, even Paul's dad who seemed to have tears in his eyes.

Ahhh, the Internet.....soon everyone will know and everyone will be an "expert" in this disease. As I talk to various people, many offer information they have gleaned from the Internet but the fact remains that this is a rare, complex, ill-understood disease.

The Verdict is In

Finally, on Tuesday afternoon, Dr. Nantel calls us with the diagnosis. It is indeed, "aplastic anemia". A bad diagnosis, but not as bad as leukemia or lymphoma. He rattles off the information: 80% success rate with immunosuppressants; side effects: nephrotoxicity, serum sickness, infection risk; 4-5 days in hospital; steroids to counteract the side effects; weekly blood tests; testing of the siblings for possible bone marrow transplant .....I am scribbling these things down but really, I am in shock. Although relieved it's not leukemia or lymphoma, I still think of "Anita".

We prepare to tell the boys. They take it relatively well, but of course, with much emotional turmoil. They have been through so much with the devastation of the divorce and their father has been their central support figure. To have him removed would be more than they could bear. However, with the faith that only children can have, Jonathan believes that God will heal his father.

Only God knows His timing of everything. Paul's aplastic anemia may have started in the fall around the time Janelle was adopted when he started a long string of various illnesses. If we had known, of course, Janelle would not have been adopted. However, His timing is perfect in every way, including how we were able to attend my sister's wedding, how the tests occurred so smoothly, how my work is almost minimal right now, how even parking spaces have been provided for us!!

Dinner in Bliss

The whole extended family gathers and it's "business as usual". Paul is his usual reserved self, hardly chatting with anyone. Thank God, the restaurant isn't too busy and there don't seem to be any ill or coughing patrons.

I take pictures of everyone, as they tease me and groan, "Do we have to?". I just want to scream, "Do you realize that my husband is stricken with a critical illness and this may be his last Mother's Day dinner with you all? Life as you know it has changed."

But, it's not the right time to tell them just yet. And we do want my mother-in-law to enjoy her dinner.

So I just smile and continuing taking the pictures.

Death Surrounds Us

I try to hide the trembling in my voice as I call my parents; they have bad news to give to me. A good family friend, a single woman who adopted a little girl from China 6 years ago (the same year we got married) has been surprisingly diagnosed with late-stage liver cancer. She is likely to die soon. I reel in shock at this diagnosis, and grieve the awful loss that this little girl will soon experience, her world shattered, her only support removed. Although other relatives are available to care for her, it's not the same as your own mother. I think of her and I think of our little daughter: how can this be? Why, God, why?

I don't share the news about Paul as we don't have a diagnosis and I don't want to burden them yet.

I think of Paul's good friend who has to postpone his wedding because of his fiancee's mother being stricken with cancer. And of other friends' mothers with recurrent colon cancer, another battling ovarian cancer. A Regent College student with metastatic bone cancer.

The stench of death surrounds us. It always does as we all die some day, but its odor seems more pungent today.

I get ready for our Mother's Day dinner for my mother-in-law later that evening.

Bittersweet Joy

Mother's Day: my first one with Janelle, our little sunshine and ray of hope. She is such a joy and delight.

Spend a morning at the park, but don't stay too long due to Paul's low white cell count.

Absorb the sunshine and the warmth of the moment, wishing that life could return to "normal".

What will next Mother's Day be like? What will Father's Day be like this year and for the years to come?

They say everything must die
For a new life to begin
In the seasons of our love
I feel the winter setting in

Through this bitter, bitter cold
I always thought that I'd have you to hold me
Hold me through the storm
And keep me warm
Through this bitter, bitter cold

Like the moon upon the water
Gives diamonds to the sea
I pray that when the snow is gone
You'll return to me

- Tara MacLean, "In the Wings"

The Consultation

1:00 pm - that's the time we are told to come to B4, the Bone Marrow Treatment/Leukemia outpatient ward. These very terms sound ominous. Despite my training as a physician, I shudder when I hear these terms.

I try to keep our daughter Janelle occupied, but it is hard to be upbeat with our little one when I am trying to keep awful dark thoughts at bay. I feel unable to fully give her the love and attention she deserves. I feel like an inadequate parent; of course I'm not, but it's just how I feel.

2:30 pm - Dr. Nantel arrives and I recognize him instantly. He obviously doesn't really remember me, as I was a Family Practice resident and he was a Senior Internal Medicine resident. After the hour long consultation, a bone marrow biopsy is arranged for Monday. His best guess is "aplastic anemia" but this could be completely wrong. The bone marrow biopsy is the judge. That very afternoon, Paul gets a platelet transfusion as his platelet count is 17. I think, "How long has it been this low? Why didn't we see the GP sooner? Would it have made a difference?"

Again, not much to do, except pray, pray, pray.

The Terrible Three

That's all that runs through my mind - the "terrible three". The pancytopenia can be explained by either leukemia, lymphoma or aplastic anemia. None is good, but of the three, aplastic anemia is the "least bad". Who comes to my mind is "Anita".

She was only 19 years old, a feisty, sarcastic young woman barely out of her adolescence who was confined to her hospital room in isolation because of "aplastic anemia". As a freshly minted student intern, she was one of my first patients that I took care of (if you can call it that at that embryonic stage in my career!). Dr. Mant, my preceptor and her hematologist, had an uneasy relationship. He was very parental towards her. I recall her begging to have Mandarin oranges and him patiently explaining once again that she couldn't because of her low neutrophil count. At that time, I thought, "How inhumane can this be? Denying a person a simple pleasure of life when she is probably going to die anyways?" Despite my ignorance as a medical student and lack of maturity, I could sense the futility of the situation. Nevertheless, it was imperative that she did not consume the fruit.

Another couple of weeks of watching her blood counts, the daily visits to tell her that she couldn't eat fresh fruit, then one day, Anita got severely short of breath and had to undergo bronchoscopy: it was Pneumocystis carinii. A rare disease back then, not so well known now as these days in AIDS patients. Back then, AIDS was just being defined (OK, that dates me a lot!!) Anita went to the ICU, it was then Christmas and I was off the service. Later, I heard that she had died. That was winter 1983.

"Oh God! please let Paul have something benign like a viral induced pancytopenia that will spontaneously resolve. Not something awful like aplastic anemia....or worse, leukemia. Maybe Hodgkins' lymphoma would be okay, like what Mario Lemieux had (Paul is a hockey fan anyways) and it is "curable". But, Paul doesn't have any lymph node enlargement."

These were the kinds of thoughts whirling in my mind.

But amazingly, God gave me restful sleep during these awful days of uncertainty and angst.

Feeling Blindsided

After all these years of singleness, my soulmate and I are together for a scant six years when suddenly - BOOM! - out of nowhere, we are blindsided by this terrible illness. An illness still not yet identified, but surely to be an unkind diagnosis. Our GP's office calls us to let us know that the next available appointment with the hematologist is next Thursday, almost a week away. I fear a "blast crisis" if leukemia is the diagnosis so I turn to a good friend Riyad for advice.

Riyad speaks to his hematologist friend and advises me to call VGH to arrange Dr. Steve Nantel to see Paul ASAP, as timing is critical. I recall Steve Nantel's name as we had trained together in residency years ago. He has a good reputation and I'm pleased that he is on call.

Thankfully, he agrees to see Paul on Saturday at 1:00 pm at the hospital. I feel completely helpless and full of fear of the unknown, with awful scenarios running through my mind. Paul is surprisingly calm, oblivious to the terrible differential diagnoses. So meanwhile, we can only pray. That's all: pray.

How Life Changes in a Moment

How life changes in a moment. One moment life is "normal". The next it's changed forever. Life as you knew it is gone replaced by another existence that has with it the ever-lingering spectre of death. Life as you knew changes, completely against your will. That's how I felt when I received the phonecall from our GP that my husband had "pancytopenia."

How could this be? We had just celebrated 6 years of marital happiness (not always bliss, but nevertheless happiness) and were enjoying our three children (our youngest recently adopted 6 months ago). Why us? Why now? Why? Why? Why?