The Terror Trap (Department Z Book 7) Read online

  Finally, we come to an agreement. The first treatment in this fourth round is scheduled for Monday, 15 June. This will be followed by two more infusions, each three weeks apart, after which scans will be done and we will know more accurately where we stand. Dr. Chiorean concludes by making it clear, it is our right to call it all off at any point.

  Dixie’s pain is constant now and increasing. Pain meds are in daily use. Dr. Chiorean says it will only get worse. As our last time together concludes, it has been an emotionally exhausting session for everyone.

  Nine more weeks of treatments.

  It feels daunting.

  Tuesday 16 June. To augment yesterday’s Oxaliplatin infusion, Dixie begins the morning by taking the first of what will be morning and evening doses of oral Capecitabine in pill form. By nine o’clock she is throwing everything up. So much for chemo pills!

  Capecitabine (Xeloda) tabs are potent, belonging to a category of chemotherapy called antimetabolites. Antimetabolites are similar to normal substances within a cell. When the cells incorporate these antimetabolites into the cellular metabolism, they are unable to divide.

  While the first morning with the chemo pills causes Dixie to be ill, after this she is able to keep everything down. Her pain level has increased substantially these last three weeks. She does not complain, but I see it in her eyes and her face. She has always possessed this wonderfully expressive countenance that telegraphs what she may not be saying out loud.

  To live with Dixie successfully (let’s say as a husband or a youngster, for example), you need to learn to read her face early on. Truth? This is good advice for any husband or child. When Mom’s look reaches the you’d-better-not-make-me-come-and-get-you stage, you take note. In the days when our children were young, if Mom’s look was accompanied by a snap of the fingers, it mattered not where you were in the church or who you were doing it with, you had just been given your last hope of survival notice! She has always been the best in our family at this. I think it’s a gift.

  This week, she finally owns up to the pain level she is experiencing. It’s been in her eyes and countenance for some time. She agrees it is time to up the pain medication. This helps somewhat. Still, her energy is extremely low and the ability to fight off pain is decreasing.

  Wednesday. We spend the morning reorganizing and chronicling all her meds, sorting the out-of-date from the still good. By noon, we are at SCCA again. Dixie’s pain level is sufficiently high enough to require an X-ray of her back. The pain in her lower back as well as in her abdominal area is steadily increasing. The medicines make her sleepy so she is resting more. Her energy level remains low.

  Soon we are home again. Whether in pain or pleasure, home is still the best place. Her creativity and instinct for comfort, functionality and beauty, has made it so.

  . . . so teach us to number our days that we may get a heart of wisdom. ~ Psalm 90:12

  . . . they say you can never kill a green olive tree. Some live for 1500 years. New shoots will spring up from the roots to ensure that life goes on, passed from one generation to another. Green olive trees in the house of God . . .

  . . . the only icons of aging that younger people will ever meet.

  What we show them as we go, gives them a model of what they, too, can strive for.

  We show them the way to the fullness of life. ~ Joan Chittister

  I realize how amazing it is to live in the shade of a tree like this.

  But she is only one.

  Many more green olive trees are needed.

  54

  Attitude and Tenacity

  Attitude is a little thing that makes a big difference. ~ Winston Churchill

  Chris Evert, giving commentary on a tennis match at Wimbledon, said of a young female player: “If she doesn’t learn to play beyond herself she won’t go very far.”

  What about life? Should the goal of life be to “live beyond oneself?” I think that is the central message of Christ. To live beyond ourselves. To look beyond the perimeter of our own skin and our own comfort in order to touch the perimeter of others and to enter fully into God’s perimeter.

  People whose perimeters are closest to mine, who have refused to touch the perimeters of others, remain angry, isolated and unhappy people. Even as I have watched and reached out, their perimeters have shrunk smaller and smaller until those individuals have diminished into a cell of hell. Lord, help me live beyond myself. ~ DLT diary, July 1997

  Monday 15 June. During the intervening days emotions are at low ebb. Not much of anything positive or encouraging has been heard. It is with this mindset that we arrive at SCCA for a 12:40 afternoon blood draw and a 1:00 medical interview, prior to a 5:00 infusion.

  We meet Karl Cristie F Figuracion for the first time. Karl Cristie is a Nurse Practitioner. She is young, attractive, intelligent and prepared. And her attitude is refreshing. Uplifting even. Dixie answers the usual series of update questions. And then asks one of her own. “Tell me what are the physical signs that indicate one’s body is beginning to shut down?”

  For a moment the nurse is caught off guard by the question. But only for a moment. She focuses in quickly, articulating clear cause and effect issues from a medical viewpoint. Then she asks, “Why the question?” Dixie says she is deliberating the value add reasons before undertaking this next infusion. Since the outcome is more questionable, good reasons are needed for putting oneself through additional pain and suffering.

  People may hear your words, but they feel your gratitude. ~ John Maxwell

  Nurse Karl Cristie and Dixie make a surprising connection. Not that the information being shared is different. It isn’t. Not that anything has changed with what we are facing. It hasn’t. We conclude our time together in the tiny exam room. She expresses how much she enjoyed being with Dixie. Gives a couple of assignments. Shakes our hands. Smiles. And as quickly as she has entered our lives, she is gone. We never see her again.

  On our way to F5 and the infusion treatment center, we talk about why we are so affected by the interview. One word sums it up. Attitude. In addition to the usual professionalism one comes to expect, it is her manner, her disposition, her physical expressiveness, her relaxed attitude. The feeling given that the patient sitting before her and her husband do matter. A lot. That she is in charge, confident, caring and seeking to understand. That she knows hope is sometimes as important as a prescription.

  Late that evening, following chemotherapy infusion, we return home.

  Tuesday. There is a visit with Dr. Anne, our family physician, for blood work and an assignment for physical therapy. On Thursday, Dixie begins some very limited exercise routines with therapist Magdalena Pertoldova at Overlake Physical Therapy.

  Friday. She walks with me ten blocks to have her nails done. It has been a long while since we have done this much physical exercise together. Her hands are too unsteady to do her own nails, so a manicure is a nice reward. Overall, things are going very well.

  Saturday 20 June. Suddenly, all the previous day’s forward progress is thrown in reverse. Dixie awakens so weak she can hardly get up and move about the room!

  There are times in life when people must know when not to let go.

  Balloons are designed to teach small children this.

  ~ Terry Pratchett

  Sunday. It is the same. She sleeps most of each day. Lots of cramping and belly pain. Her digestive system appears to be totally blocked

  Monday. We are at SCCA again. More instructions. More meds. More infusion hydration.

  Tuesday. Still nothing is better. She has been unable to eat or drink for several days.

  Wednesday 24 June. I reach out to Dr. Chiorean’s nurse again and insist something more must be done than is being done. All home remedies have failed. She agrees. By 11:30 we are on our way to UWMC’s emergency room.

  Michele leaves work early to meet us at the ER. Earl and Nancy Heverly, former members of our pastoral team in Dublin California, now pastors at a church in Sacramento, are
planning a visit today on their way to a wedding in Boise Idaho. I reach them by telephone and redirect them to the hospital.

  They arrive near the noon hour and spend the day with us in the ER. We have history. They are longtime friends and ministry colleagues who served with us for fifteen years. We laugh and tell stories, catch up on family and give thanks for the privilege it has been to invest years of our lives in theirs and in those of their children.

  Late in the evening, Dixie is transferred to F7 SE room 7354. Once she is settled in, I return home. It is so late that the SR 520 bridge toll is turned off. I’ve never seen that before. For some reason I think the State has missed a huge opportunity. Then I wonder why I am thinking about things so minuscule at a time like this.

  Thursday 25 June. Back at UWMC at 9 o’clock the next morning, I find Dixie engaged in a lively conversation with seven white frocked doctors, pharmacists and nurses who are crowded into her room. It’s the teaching hospital way. Some teaching, some learning, some observing. She is well medicated today as we await a resolution to her problem. I am told there is still a long way to go, whatever that may mean. I’m just relieved to have her under the watchful care of the medical team.

  Cramping and belly pain continues to come and go as her digestive system refuses to cooperate. Her condition is severe. We are informed she must remain in the hospital for another night under the watchful care of the medical team headed up by Dr. Max Cohen, with Dr. Andrew Harris assisting.

  The patient has a life-threatening bowel obstruction. It is not caused by her cancer or by any abnormal twisting or blockage. It is an outcome of the morphine medication taken to alleviate pain. One of those side effects we are always hearing about. This has resulted in severe constipation. As the levels of nausea and pain continues to increase, the team recognizes they are in trouble. They call for Dr. Lucille Marchand, UWMC director of palliative care.

  Dr. Marchand is told before coming in that I am a “prominent person in the community and so she really needs to step up.” In recounting this to me later she said, “Well, I told them I don’t really care whether he’s prominent or not. My goal is to treat everyone in the same way. I just know this is a family in deep trouble and they need me.”

  It doesn’t take long before we are all in love with Dr. Marchand.

  Friday, 26 June. It is a beautiful day outside, but for Dixie it’s just another morning at UWMC. Sunshine is a window only experience. Jess, the day nurse is busy administering medications and connecting an infusion hydration line. Dixie has eaten virtually nothing since entering the hospital and for several days prior. Minutes ago she vomited most of her meds before they even had a chance to perform their respective duties.

  Dr. Marchand is discussing dietary options with Dixie. Michele sits close by, taking notes.

  Early this morning, Dr. Cohen expresses concern at how treatment up to now is having little, if any success. The full assigned medical team joins us to discuss the situation and share evaluations. A decision is made to stop any additional hydration for now. Instead, she is going in for more X-rays to try and find what is making success so elusive.

  At every stage of discovery there is shock and new apprehension. After they are gone I try to keep my attitude and conversation with Dixie and Michele on a positive, encouraging tone. But the Valley of Shadows looms dark and long in my heart.

  Saturday-Wednesday. For the next several days the struggle goes on. Dr. Marchand is with us in the room once every day for at least an hour. I learn she is fairly new to her position, having come here four months earlier from the University of Wisconsin. I think to myself, maybe she doesn’t have all that much going on as yet, so that’s how she can spend so much time with us. We are more accustomed to “in and out,” like a fast-food drive through. Nothing could be further from the truth as it turns out. She is here to learn who we are, to hear our stories, our concerns and hopes, and to determine how best to support us all.

  Dixie had been ten days like this, without eating, constipated and in pain before we came to ER. She has been given nothing to eat since. She has to be starving. When I say something about this, I’m told it will be worse to feed her, even intravenously, in her present state.

  The process drags on endlessly. Dr. Marchand and the medical team’s angst deepens as the first line of medicines has no desired effect. The first line is comprised of the very best, the newest and most exotic drugs that can be utilized. They try again with a second line, or the second best drugs, on top of the first, to see if things can be broken loose. Nothing. Commencing with the third line, it has become obvious the medical team is very concerned. Dixie’s pain level continues to increase Still there is no sign of relief. Nothing they try is working!

  When a fourth and final line of drugs is utilized with no results, I observe the staff stealing concerned glances at one another. What are they thinking? What are they saying to one another when they leave the room and huddle together in the hallway? I want to be in that huddle with them, listening, urging them on. Instead I hang back, knowing it is not my place. My place is here with her.

  Dixie tells Dr. Marchand she wants to finish well. She wants to be able to go on living, but does not want to be a dead person walking. Quality of life over quantity is a priority. She thinks about her grandchildren and great-grandchildren. She wants to continue creating warm memories of her in their minds, but does not want to be a burden to her family. She is having trouble being the receiver and not in the giving role.

  Time passes like a slow moving stream. My tolerance level is shrinking. Too much in-and-out going on. Too many doctors and nurses, too much medicine that isn’t working. I want a plan. I am watching, listening, asking questions. What’s the plan for today? Do we even have one? What’s the plan for tomorrow? I want to be in control, making something good happen, but I am not and it isn’t.

  I am told later the medical staff realizes they are in a near emergency situation. Nothing they know to do has worked so far. There is a sense of hopelessness and defeat in the air. It is at this point that Dr. Marchand decides to fall back on her nursing background. Small enemas have been tried unsuccessfully, but she recalls doing large volume enemas in the old days.

  “I think we should try large scale enemas with mineral oil and soap suds and special positioning to help it work,” she declares. She has been talking with Drs. Max and Andrew every day. And every day they laid out a new game plan because Dixie was in such critical condition.

  She tells me later, “When I say to them we are going to order high-volume enemas they look at me like, ‘Really? I don’t think we’ve ever ordered one of those before.’

  “When I was a nurse, we didn’t have a lot of fancy drugs, so enemas were a pretty basic thing for us. When you tell this to a doctor or nurse today, they stare and say . . . ‘wha-a-at?’ But if this didn’t work for Dixie there was nothing else. She was going to die. She would have ever-increasing pain until the end. It would be a terrible way for her to die.

  “So I was always in the room talking it through with the nurse while we did this, telling her what it was we were going to do and how we were going to do it. I would give her explicit instructions on positioning. This is how you do it. I showed her every detail. This is how you give a full enema.”

  And with that they go to work.

  Under the guidance of Dr. Marchand and over the course of several days, the old-fashioned procedure is what at last produces results. She exclaims, “When we finally have success, it’s like if I could have danced, I would have danced! Because if this didn’t work, there was nothing else.”

  I express to Dr. Marchand how grateful we are for her tenacious spirit, mirroring so well the tenacity of Dixie, and how much we have become believers in palliative care during these critical days. We had met earlier with the palliative care team at SCCA, but it was here in this current crisis we came to better understand the essential and effective service this comparatively new addition to hospital medical teams brings
to the patient and their family.

  55

  The Tipping Point

  The point at which a series of small changes or incidents becomes significant enough to cause a larger, more important change ~ Vulcan Post

  Thursday 02 July. In mid-afternoon of Day 8 in the hospital, the blockage in her digestive tract shows further signs of breaking up. One more night and, nine days after her admittance to ER, Dixie wishes the hospital staff well and returns home. It feels right and good to have her here again, at home, in her nest, even if the next few days will prove to be challenging ones.

  We strive to monitor her pain levels, listen to the multiplicity of inputs from doctors and dietitians, and keep up with the ever-changing recovery plan. Her pain fluctuates 24/7 on a scale of 3–10, 10 being “it doesn’t get any higher than this!” But this is where she is and what we do.

  I praise you, because I am fearfully and wonderfully made; your works are wonderful, I know that full well. ~ Psalm 139:12 (NIV)

  Monday 06 July. At 7 o’clock, we check in at SCCA for a routine blood draw. By eight o’clock we are on F4, ready for our appointment with Dr. Chiorean. The window views of life on Lake Union offer their familiar beauty. Sail boats and kayaks, houseboats and seaplanes. They are like living museum pieces on a watery tableau, filling the eye.

  Dixie’s name is called and we follow a nurse to Exam 4, answer the questions, and check BP counts (130+ in both arms). As the nurse leaves, he tells us the doctor will be with us shortly. We settle in. Michele is with us so we entertain ourselves while waiting. Eventually Dr. Chiorean and nurse Kate join us and undertake a review of what has happened over the previous three weeks and what decisions must be made regarding next steps.