Pop’s Page

By a quirk of the calendar, the days of the week in July, 2008, fall on the same dates as they did in July, 2003.   So, it’s hard not to re-live those days five years ago when our family walked in “the valley of the shadow.”

The following was written shortly after Susan’s death.  I repost it here as a tribute to her memory, and to the Lord’s unfailing love in a time of sorrow.

A Death Observed

The last “good” day of Susan’s life was Friday, July 11.  By “good” I mean when she wasn’t sick in bed at the hospital or at home.   In the preceding week every other day was good followed by a bad day, when she was very ill.   For example, on Wednesday the 9th, she had her regular visit with Dr. Savin, and felt good enough to go shopping at Sam’s where we stocked up food for all the family that was arriving.  David came in from Atlanta that evening, and Susan prepared a wonderful dinner for him and 14 others-just like old times.    We couldn’t keep her sitting down.   She was up serving everyone just like she always did.

But then on Wednesday night she got very sick with nausea and pain.   Even the new pain killers were barely enough to comfort her.   Finally, at 4 AM,  they kicked in and she slept until 1:45 PM on the 10th, our 38th wedding anniversary. Traditionally, we go out with the Clellands on our joint anniversary: they, too, were married on July 10, 1965.   But the previous night’s struggles were too much for her.   We told Dave and Gayle that we would try to go out with them the following week when Susan was feeling better, and would save our energies for the party the family was throwing for us on the 11th.

Sure enough Susan had a good night on the 10th.   I was exhausted when we finally came to bed, and lay flat on my back waiting to fall asleep.   Susan came to bed slightly later, and asked if I wanted to have a time of prayer with her.   I said, “Sugar, I’m just too tired to even pray.”   With that, she climbed into bed, and then kneeled above me and began praying out loud.   She thanked the Lord for me her husband of 38 years.   She thanked Him for the good care that I was giving her during her illness.   She thanked Him for our family, and prayed for each family member by name.    It was a moving prayer.   I wished I had had a tape recorder so that now I could savor every word.   But it brought peace to my soul because I knew deep inside where she lived-whatever was about to happen-that she would be all right.   And so would I.

The daylight hours of the 11th turned out to be good ones for Susan, as Elizabeth arrived from Atlanta to join David.   This evening was to be the zenith, because all 16 family members who were in town were available for dinner at the new Luna Del Noche in Plano.   It was a wonderful evening of celebration and laughter and enjoying one another.  Peter even captured the two of us on his digital camera, both smiling, and Susan looking like her beautiful self in the new blue slinky knit outfit that Shari had bought her from Chico’s.

Then came Friday night.   It was the worst of all: so much nausea that Susan could not even hold down any pain killers.   By Saturday noon, she was already running a high temperature and in great discomfort.   So much so that when Dr. Rogoff told us to come to the ER he said “call an ambulance if she can’t make it by car.”  And so I did, and shortly there were 5 firemen standing in our bedroom followed by two paramedics from the ambulance.   I rode in the front of the ambulance as we traveled-without sirens-down to Medical City.  In the ER they began to stabilize her pain and temperature and nausea.   Fortunately, we were able to get a private room for her on the 8th floor of the South Tower (the oncology floor) that Saturday afternoon.  Thus began the process of assessing what was wrong.  After three tries they finally got a NG tube down into her stomach through her nose to help clear out the gastric juices that were causing the nausea.  Then at 11 PM we were called down to Radiology for a CT scan.

I spent Saturday night with her in her room on a sleeper sofa they rolled in.   Sunday morning Shari came to relieve me and I went home for a nap and a shower.  As I entered her room around noon on Sunday I found Susan sitting on the floor on the side of the bed away from all the pump lines.   Apparently, as Shari left the room for just a moment to show some visitors to the elevator, Susan-in a semi-delirious state from the morphine they were giving her-decided to get up and go to the bathroom.   In her disorientation she got out on the wrong side of the bed, and pulled out both her NG tube and the IV going into her mediport.   In the process she fell down next to the bed.   Fortunately, she had not seriously injured herself, but the NG tube and port line had to be reinstalled once again.  And from then on we decided someone had to be with her 24/7.

After this episode Shari related the conversation that she and Susan had with Dr. Munoz while I was away.   “Your abdomen is full of cancer, sweetie.   There is nothing more I can do.  You need to enter a hospice program.”

Monday came more testing-of the worse sort-down in Radiology.   They took her down in a wheelchair, and made her drink awful stuff that made her nauseous.   Finally, I got them to find a gurney for her to lie on while she waited for more X-rays to be taken.   Somehow we managed to get through this and back to her room where she could finally get some rest.   With the previous day’s conversation with Dr. Munoz in mind, I steeled myself for Dr. Savin’s visit.   As it turned out both he and Dr. Rogoff appeared outside Susan’s door within a few minutes of each other.    “It’s a full intestinal blockage,” they reported.  “Is there anything more you can do?” I asked.  “No, they replied.   It’s time to enter hospice.”    “How much longer does she have?” I asked.   “Days to weeks,” Dr. Savin replied.   Then Dr. Rogoff asked Dr. Savin if we should continue TPN-the nutritional supplement Susan had been getting through her mediport-and on which she had gained 11 pounds in the preceding two weeks.   “No,” Dr. Savin replied, ” we would just be feeding the tumor and not the patient.”    This meant, of course, that Susan would slowly starve to death-with the attendant symptoms that this would produce.   This was hard news, indeed.   For three years I had thrown myself into project managing her treatment.   From Texas Oncology to M. D. Anderson to Dr. Munoz, I had tried to find anything and everything I could to battle this disease.   My hard drive is filled with articles on ovarian cancer and its treatment.   Yet, standing above all my research stood a single finding: “the average survival time for advanced ovarian cancer patients is 37.5 months.”   On July 1, Susan had been battling the disease exactly 38 months.  During that entire period I had hoped that the Lord, in His mercy, either would heal Susan supernaturally, or else would providentially provide a “silver bullet” that would heal her medically.  I had hoped that TLK286 would be that bullet, but it proved not to be the case.   So, this was devastating news, particularly coming from Dr. Savin, who is the eternal optimist.    This was really the end.

It now remained only to make Susan as comfortable as possible during her final days.   A major issue was her sensitivity to morphine, and the delirium it produced.     Between Dr. Savin and a pain specialist it was decided that hydromorphone (dilaudid) would be a good substitute, since chemically it was like hydrocodone (vicodin) which she tolerated well.  This switch in pain medications did seem to cause improvement in Susan’s mental condition.   However, between the disease itself and the lack of nutrition there was a strong tendency for her to go in and out of delusional periods.    This continued to worsen for her remaining days.    Once, in the hospital, she called out to her mother to come back into the room.    Since the dying often see family and friends that have gone on before, I was never sure as to whether this was that experience, or simply a “waking dream” that Susan seemed to have more and more of in her final days.

In many ways the delusional state that Susan was in was more painful than watching her suffer the physical pain itself.    Susan was the most together person I ever met.   Rarely would she get flustered.   On the few occasions when this happened, I was the cause-doing something totally wrong, or silly, or mean.   In the delusional state she began talking to all sorts of people that weren’t there.    Sometimes she would catch herself, and say “there I go again.”   Her last days in hospice at home became increasingly delusional until she got to the point where she no longer spoke-but I am running ahead of my story.     I share this now because for me, this was the most theologically challenging issue in her illness.   “What good is this type of suffering doing her?” I would ask.   Indeed, it was like her coming down with Alzheimer’s compressed into a single week.   We discussed this among family members, and decided this was a test of faith: my faith, not hers.  Could I trust that God was still showing her and me good, even though she was totally out of her head?   Could Abraham trust that God was showing him good even though he was asked to sacrifice Isaac, the child of the covenant?  The answer to both questions was, “yes.”

The other major issue in terms of Susan’s comfort was the NG tube that was basically a suction line that ran from the port on the wall next to bed, into one of her nostrils, and then down her throat and into her stomach to suck out the gastric juices that the stomach manufactures day and night no matter what else is going on.  This was very uncomfortable for Susan, and we very much wanted to find away to eliminate it.  The first try was on Tuesday (July 15).  Dr. Rogoff wanted to bypass the NG tube by placing another tube from the stomach to the outside.   He attempted to come from the inside out using a probe that he placed down her upper GI tract to guide him.   This failed.   To him it appeared that the tumor was so large that it was blocking any path from the stomach to the outside.

The one good effect of the failed procedure was that the anesthesia allowed Susan to have a very good long sleep, freed from the delusional state that she had been in before.   The next day, Wednesday, she actually felt much better.    By Thursday, however, she was having more pain and more spaciness.    On Friday we were startled when the radiologist entered the room and told us that he thought there was another way to get a line into the stomach.   He would come from outside in, using Xrays to guide him.    After a long period where they gave up on the first Xrays, and sent her to the CT machine, it finally worked.   By going into her side between two ribs they successfully placed a small drain line from her stomach to the outside world.   This was in turned tied to the vacuum line to suck the gastric juices out, bypassing the NG tube.   That evening Dr. Rogoff himself personally removed the NG tube, and Susan looked like herself again, instead of having the elephant-trunk-like appendage attached to her nose.   This was a huge step forward.

Friday was also a big day psychologically for me, because that was the day I called St. Paul Hospice to arrange for Susan’s care at home beginning on Monday.  I was admitting to myself the unthinkable: that Susan’s days in this flesh were numbered.

This week in the hospital was meaningful in a special way, because each night the family gathered around Susan’s bed for “family commotions” as we used to call them.   Someone would read a passage of scripture, and then we would pray and sing the doxology-just like in the old days when the boys were growing up.     One of these evenings was very memorable because Susan was pretty much spacey during the daytime hours.   On this occasion, after the scripture was read-Psalm 103 I believe-someone asked Susan to lead us in prayer.   It was like a light bulb had been switched on in her soul.   She prayed the most marvelous prayer, perfectly lucid, and just like Jacob praying for the 12 tribes before his death.   She prayed for each family member-present or not-by name.    Each intercession was perfectly worded for that person, just where they were in life.   Then she closed by praying that all future generations of our family would know the same blessings that she had experienced, and that each would be faithful to the covenant promises they had received.   We were all deeply moved.   It appeared that the Holy Spirit Himself had descended on Susan to guide her-with groanings too deep for words-to pray the perfect prayer for the occasion, and to pass on her legacy of faith to next generation.

Finally, Monday came, and in the afternoon Susan was transported by a non-emergency ambulance back to our home on Ash Circle.   Peter’s digital photos show her in her new hospital bed in our master bedroom, with that peaceful look on her face.  It was about this time that her agitation and delirium worsened.    I don’t believe she ever really slept for about 72 hours-or else she was continuously sleeping with her eyes wide open.   The conversations with non-present parties continued unabated.   My own workload increased greatly as I became her primary caregiver-supplemented by daily visits from the home health aid, Frances, and by every-other-day visits from the hospice nurse, Mary.  I was administering all kinds of medications into her IV port: zofran, protonix and dilaudid, along with saline containing Mg & K.    I also had to man the portable vacuum pump that continued to drain her stomach while at home.   The first night home I slept next to her on our bed-but sleep was very little.   She continued her talking throughout the night, and I kept adjusting her painkiller to help reduce the groanings that I heard.   I got so little sleep that David insisted that he do the next night-during which he got even less sleep than I did the night before.

During this period Susan’s delirium manifested itself in odd ways.   On one occasion she was convinced that the ceiling fan was falling on her.   On another, she was certain that the old Sanders family photo that hung directly in front of her was cracked, and made me take it away.   At yet another time she screamed out that she had dropped the baby, and it was hurt.   It took me a long time to calm her down after that, and to convince her-if I ever did-that the baby wasn’t real.  Yet once again she would have moments of lucidity.   These would occur during family devotions in the evening-though not as long as in the hospital-or when people would drop by to visit.    On Wednesday, Karen and Jill brought dinner over, and Susan decided to get out of bed and into her wheelchair and go outside.   She greeted Karen correctly by name, but called Jill “Michelle.”   That evening she had her last “meal” sitting at a table.  She was even able to swallow some rice that the ladies had brought over.   That evening Terrie dropped by, and we had prayer with her as she prepared for her major surgery on Friday.   This time, when asked to pray, Susan forgot what she was praying for.  She prayed a fine prayer about children, but it had nothing to do with Terrie or her operation.

By Thursday morning the delirium worsened and I called the hospice nurse to see if they could send out something to help Susan sleep.  While I was waiting for this to be delivered Judy Hewlett dropped by to give us a CD of Stephen Jones’ wedding.   Susan was lucid enough to talk to Judy, and I left them alone.   Afterward, I noted Judy in tears as she realized the state of decline in Susan’s condition.   This conversation and those she had with us that day were the last of her life.   Shortly after noon the prescribed ativan arrived and I immediately gave it to her in her IV line.   Very shortly afterward, she went to sleep, and from then on she was never really awake.

At this point the pace of life slowed down somewhat, since we no longer had to watch Susan to keep her from doing something that could injure herself.   I continued giving her her meds on schedule, but now I could actually sleep through the night next to her.    I would take my arm an extend it into her bed and hold her hand-which by now had lost its grip.   We continued to have nightly “vespers” as we called them, with a lot of singing and scripture, and then me closing with prayer.   There was no indication that Susan heard any of this, for now she had become unresponsive to any stimuli.

On Sunday morning, with only Susan and I in the room, I turned to Proverbs 31.     This has been a controversial passage in our family because some younger members felt that “becoming a Proverbs 31 woman” was overhyped in our conservative Christian culture.  But for me, and for her, it described Susan’s life perfectly.   I read the passage out loud to her-with no indication that she heard it.   Then I told her that she had been the perfect wife and mother for our family, and how much I loved her.  I kissed her, but her lips were unresponsive-while previously, no matter what she was going through, she always kissed back.

By Sunday afternoon, Susan’s breathing changed, and we became sufficiently alarmed that we summoned the hospice nurse on call to come out and examine her.    She had us adjust her medications, and start giving her oxygen from the portable pump that hospice had supplied.   The nurse indicated that Susan’s pulse was still strong, and didn’t seem to think that we were entering a critical phase.  After she left something happened that totally unnerved me.    Susan’s right side had been propped up with pillows to keep her comfortable.   One of the pillows slipped through the gap between the bed and the side rails, and as it did, there was nothing to hold Susan’s right arm.  It swung lifelessly down in the gap-just as you might see happen to a dead body in a movie.   As I repositioned her arm, and then lifted her other arm, I found that she was totally lifeless.   Except for her heartbeat and her breathing, she seemed all but dead.   I was heartbroken.

Sunday night was much like other recent nights until about 4 AM.   Then I heard Susan groaning in a way that convinced me that she was in much pain.  I quickly arose and began giving her pain boosters.   By about 5 AM her groaning abated and I felt secure enough to go back to bed next to her.   Then I was awakened at 8:30  by a new sound: a sound of her breathing in a new way.   As I watched her, I saw that to get enough air-even with the oxygen on max, she had to tilt her head up and open her mouth and gasp.   She did this every 5 seconds or so, and it looked so pathetic that I was completely disheartened.    Yet when I felt her pulse it was strong.

At around 11 AM  Frances came in to give Susan her bath and put her in fresh clothes.   She had been off during the weekend, and the rest of us were so afraid of hurting Susan that we decided not to move her or try to change her outfit.     We left the room while Frances, in her own gentle way, gave Susan her bath and dressed in her in new clothes.   When we came back in there she was, absolutely beautiful with her hair shampooed and combed under her customary red hat, and her makeup applied perfectly.   Yet, she still struggled to get air.    Frances looked at us and said, “it won’t be long now.”  “If anyone has not released her, you should do it now.”    I replied, “I have tried to release her, but I’m having a hard time doing it.”   Then without warning I burst into uncontrollable sobs.   Shari came and embraced me, and for several minutes we stood there hugging and crying.   Frances said her goodbyes, just as Mary came in.   In the room at that time besides Mary were myself, Shari, David, Elizabeth, Peter and Megan.    Mary looked at Susan’s breathing and said that if anyone had not said what they needed to they should do it now.   Shari replied that this was the great thing about our family, that whatever needed to be said had been said long ago.

At that point I kissed Susan for the last time and said,  “Sugar, you’re going to see Jesus face to face!”   Her eyes opened at that moment, and she seemed to be able to see all that were in the room.   Then she closed them, and let out one more breath.   And then she was gone.

Somehow, I managed to pray out loud, thanking the Lord for His promises to her, and for the life she had lived, and for the blessing she had been to all of us.  Then we sang the first verse of  “Jesus, What a Friend for Sinners.”  Then  I asked Peter to read Philippians 3:7ff:
 

But whatever gain I had, I counted as loss for the sake of Christ. Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ and be found in him, not having a righteousness of my own that comes from the law, but that which comes through faith in Christ, the righteousness from God that depends on faith– that I may know him and the power of his resurrection, and may share his sufferings, becoming like him in his death, that by any means possible I may attain the resurrection from the dead.  Not that I have already obtained this or am already perfect, but I press on to make it my own, because Christ Jesus has made me his own. Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus
Susan’s earthly race was over.   She now was receiving at that moment the prize she had longed for.    As Mary began the necessary processes for readying Susan’s body for transport, we continued to sit in the room.   Susan’s body was partially upright in bed, her head tilted slightly to the right, and her arm resting gently on a pillow next to her.  She seemed totally at peace.   And so were we, though our loss is beyond measuring. Yet someone-Shari I think-observed: “this was so like Susan.  She had to be properly dressed and made up before she took her leave to heaven.”  We all chuckled knowingly, even as the tears streamed down our faces.