Friday, November 20, 2009

One Year Ago Today

One year ago today my life changed irrevocably.

On 20 November 2008, my wife Presbytera Karen was diagnosed with a tumor. A year earlier she had quit her job to look after her father (in-laws live with us, or we with them; however you wish to cast it) who was suffering the final stages of Alzheimer's Disease. As it turned out, he died within a week of her leaving work, and so she continued to be at home looking after her mother, who is wheel-chair bound due to a stroke and broken hip.

Over the course of the year, Presbytera's mood and character began to change - to deteriorate, one might say. She became easily frustrated, often-distracted, and lost her balance on occasion. Naturally enough, we attributed all of this to the stress of leaving work and the loss of her father, both major stressors in life. She also began to lose weight. We attributed this to her being more active, her job having tied her to a desk for most of the day, and she now being free to move about, take up projects around the house, etc..

However, by the end of the summer things began to become ominous. Her moods were becoming extreme and common tasks that she had performed effortlessly for years now seemed difficult or impossible for her. There were times when she suddenly seemed lost in thought and removed from things going on around her. She also began to complain of headaches. She confided to me that she thought she was developing an early case of Alzheimer's Disease, which thought I attributed to depression. But the moments of confusion and headaches concerned us all.

By late September, early October her loss of balance and continency issues worried us. Presbytera had never been one to easily be convinced to go to the doctor. But we all persisted. The first visit led to the assumption that she had a severe sinus infection - she had focused only on the headaches with the doctor - and the usual prescriptions. However, after a couple of more visits things were only getting worse.

Her depression had become alarming. She spoke occasionally about killing herself. Then one day she walked up to the local grocery (just a block or so) and got lost on the way home. The scary part was that she apparently spent some time wandering along the railroad track that passes near our house. She later told me she remembered losing her balance and lying on the tracks for awhile.

It was now November.

I demanded that she go to the doctor and tell him all of her symptoms. To ensure she did so, I threatened to go along and/or make my own appointment to tell the doctor what we had all observed. She agreed to go.

The first attempt at an appointment went awry when she couldn't find the doctor's office. This office was near us and she was quite familiar with its location. I foolishly thought she was trying to get out of the appointment (sometimes, the human capacity - especially this human - to avoid seeing the obvious is monumental). She found her way home eventually and I had her appointment rescheduled.

That appointment was on 18 November. She made it to the doctor's office without much trouble.

While I was not present at that appointment, her report of it worried me beyond measure. It seemed the doctor couldn't understand what she was talking about and was both startled and extremely concerned. The doctor's office called me and related that Presbytera was very confused and hardly able to make a coherent sentence. The doctor ordered a CAT scan for two days later, Thursday, 20 November. The scan would be performed at an office next door to his office and she would have another appointment with him to review the results the following week. He would be out of town the remainder of that week. I assured Presbytera that I would go with her for the CAT scan as she was now very worried herself.

So it was that 20 November became one of those days the reality of whose impact was nearly incomprehensible for us all. We arrived at the lab facility and she was called for the CAT scan. I went outside and made a few phone calls. When she came out she told me the technicians had asked her to wait a few minutes and returned to tell her she needed to go immediately to the doctor's office.

Thus, we walked next door and were soon admitted to one of our doctor's associates' office. I remember he was compassionate and straightforward. Karen had a tumor in her brain. He strongly guessed that it was a "primary tumor" - it wasn't long before we knew what that then nebulous distinction meant. Just to be certain, because Karen was a smoker, he wanted her to go back next door for a CAT scan of her lungs. This would clarify the likelihood of whether the tumor was primary or secondary.

I remember that while she was having the second CAT scan, I called my spiritual father and a colleague and told them what I knew. I think I also called my father, but I can't really recall that clearly now.

The second CAT scan showed clear lungs; the tumor was of the primary variety. The doctor began to ask us whether we had preference for a neurologist and for the first time mentioned "oncologist". Even though I had heard, understood (at some level) and begun to react to all that was unfolding, the word "oncologist" moved me into a sort of shock. He was telling us my beloved Presbytera had cancer. I stumbled around that I saw a neurologist for my back problems and he was part of a good team. The doctor told us he would call for us to see someone from that team and begin arrangements for her to be admitted to the hospital. When he stated blankly that she would be admitted to the hospital no later than the next day the shock deepened. He told us to go home and await a phone call.

When we got home, I had to tell Mom (Karen's mother) what the news was. I sometimes go into what I call "professional mode" - a kind of state of consciousness in which I disengage from personal feelings to deal with a situation. I suspect all priests, ministers, firefighters, police officers and soldiers all experience similar shifts of consciousness. With Presbytera's halting assistance, I filled Mom in on what we had discovered. I recall urging us all to await the assessment of the neurologist, who could give us better information and detail; and perhaps even counter the generalist's alarmist diagnosis.

A phone call directly from my neurologist was the next shock. My neurologist told me he had reviewed the CAT scan and that Karen definitely needed to be taken to a hospital. His team's brain specialist was out of town and he highly recommended the team at Charleston's MUSC hospital. He had already spoken with the head of the department and they would be calling us shortly.

By now Presbytera was exhausted - for a couple of months periods of exhaustion were common with her - and she went upstairs to take a nap. I noted that our daughter would soon be home from school and realized she had to be told what was going on. In retrospect, I find all my attempted cool, logical reflections that day ironic as I kept thinking both this was horrible and also surely some big mistake.

Someone from MUSC called and in discussing admitting Presbytera I noted that our daughter would soon be home. I thought it would be better to tell her what was happening with her mother there, so she could see her and not imagine worse circumstances than reality. She would see her mother and not panic at the thought of her going to the hospital the next day. The nurse, I presume it was a nurse, now I don't really remember, hesitated but said she'd call me back in an hour or so.

Our daughter came home. By then Presbytera was up from her nap. I told her what we had discovered about her mother's condition, answered as many of her questions as I could and allowed her some time to adjust to the news. She offered to help her mother pack for the hospital, since by this point Karen seemed incapable of judging what would need to be packed. So Presbytera went to take another nap and our daughter began to pack her things.

The second call from the hospital confused me greatly. They asked whether Presbytera wanted something or had experienced something - I don't remember - but when I said she was napping and I would go ask her there was what I can only describe as controlled panic on the other end of the line. They told me they'd call me back in two minutes while I went to ask Karen.

The next call was alarming because of their desperation and because I still didn't comprehend the situation and the danger Presbytera was facing. They wanted us to take her to the emergency room immediately with the understanding that she would be admitted as soon as possible. They repeatedly emphasized that it was urgent that we get her to the emergency room as soon as possible. I didn't understand it; but I told Karen, our daughter and Mom the updated plan.

Our daughter asked if she could come with us to the hospital. Given that Karen was often more confused and moodier in the evening in those days, I agreed to this although I didn't like leaving Mom home alone in these circumstances. We began to put our 'plan' into action.

We arrived at the hospital, managed to get Karen into the emergency room (we had to park in the regular lot and walk - no one had told the ER people there was any special concern, which was probably good for our nerves at that point). After the irritating check in procedure, de rigour in US hospitals, we were ultimately directed to a small area and a bed for her. By now, I was becoming frustrated. I was confused and heading for a testosterone-motivated demand to know what was coming off here! (Funny, how when men desperately need to let out an emotion frustrated anger seems to be the prime choice.)

Then one of the doctors came to us. He was a neurologist and had reviewed the CAT scan. He patiently explained that the growth of the tumor was putting increasing pressure on Karen's brain. Surgery was needed as soon as possible. He had already ordered an MRI (the first of what became many over the last year), and they would operate the next day, probably in the morning. While tests after the surgery would be definitive, he felt certain she had either a Grade III or Grade IV Gioblastoma - another word we would become much familiar with in the weeks ahead.

He suggested that our daughter and I go home and I return the next day. He started to tell me that before the surgery she would be roomed in the Neurological Ward but paused and said, no, she would be in an ICU ward on the same floor as the surgical suite. Of course, this didn't make sense to me one way or the other but I took in the information as I began plan out the next day.

The next day was, obviously, 21 November, and we had planned Orthros and the Divine Liturgy for the Feast of the Entrance of the Theotokos. Somewhere along the way I had made the calls to let everyone know that this had to be cancelled. And so it was that on Friday, 21 November 2008, I hurried to the hospital, spend an exhausting day waiting for them to take her to the operating room, wondering why they seemed to be purposefully dehydrating her - to reduce pressure on the brain? - and reading psalms and prayers to Presbytera along with giving her Holy Anointing.

The rest, as they say, is history. The tumor was determined to be a Gioblastoma IV. There would be recovery from the surgery, radiation therapy, chemotherapy, counseling and a life changed beyond anything Presbytera and I could ever have expected. As readers of this blog know, by 4 July 2009 she was gone.

I'm not sure; no, scratch that - I am quite certain that through the whole ordeal I never fully comprehended the finality of what was happening to Karen. We talked, we cried, we argued, we laughed, we prayed, and throughout it all the "GBM IV" slowly continued its deadly progress. As each day passed she suffered more, we seemed to lose a little bit more of her; and for my part, I was always about two days behind understanding what was happening to her on any given day.

We never get over losing someone we love. At best we become accustomed to that void where our loved one was. My faith is firm that she rests in the bosom of Abraham. Yet I haven't "processed" it all yet; perhaps I never will.

In some ways, she is still with me; she is in my dreams every night, and every day my mind drifts to thoughts of her or curiosity as to how she'd react or what she'd say to some passing facet of the day.

All I can do is await the Day of Resurrection.

She was the love of my life and the Holy Trinity gave us twenty beautiful years and an equally beautiful daughter.

Thanks be to God.

I'm not really one to give advice, but I truly and seriously advise everyone: Love those around you now, and let no moment pass without cherishing those who love you; none of us know how much time together we have.


Staying in Balance said...

May your dear wife rest in peace.

I just lost 2 friends to cancer--from the same group of high school friends from 30 years ago.

I pray that God gives you some comfort in your loss.

The Byzantine Rambler said...

Dear Dymphna:

My prayers are also with you and those who loved your two friends. May their memory be eternal!

Elizabeth @ The Garden Window said...

Dear Father,

May your beloved wife's memory be eternal.

You are both in my prayers.May God grant you comfort.

I too find it hard to come to terms with the deaths of my Godmother and my brother within the last four months.

The Byzantine Rambler said...

Dear Elizabeth:

Thank you for your prayers.

Your record of the suffering of your Godmother and brother is a tribute to their memory and the Faith that sustains you. My prayers are with you and your family.

May their memory be eternal!

Anonymous said...

Thank you for sharing your deep thoughts about your Matushka, Father. My prayers are with you.

In Christ,

The Byzantine Rambler said...

Thank you, Andrew. As with all who have offered and still offer prayers, we treasure them all.

Your servant in Christ.

Jennifer in TX said...

Please know that our family is praying for you and your daughter.