Thursday, November 21, 2013

Epilogue

I traveled north to beautiful Vieux Quebec, Canada, for a vacation I yearned to take following a year of chemotherapeutic and surgical treatment for cancer. As I readied myself for bed after a late evening arrival, I discovered the unthinkable: I had forgotten to pack a tiny part that connects a piece of medical equipment to the urine pouch attached to my body. How would I get through the night without it?

I managed to wake up every two hours to accomplish what the medical equipment would have done for me automatically. I spent hours the next day trying to obtain the tiny part. Canada and the United States do not use compatible equipment, and I came close to using duct tape for the project before finding a more amenable solution.

My dilemma highlighted not only the need to check my packing list twice, especially for international travel, but also my need to truly come to terms with my literal and permanent nighttime tether to things external to my physical self.

And so it was that I came to ponder other tethers in my life.

I reflected on the experience of being fettered to work. I was close to retirement at that point and keenly felt the trussing of my freedom to my job. The truss had several sets of ties: to the alarm clock and to pristine hygiene, to work apparel and to make-up, to rush-hour traffic and to an unattractive work environment. The fact that my job was well paying did not mitigate the constraint; I felt like a songbird in a gilded cage, unable to sing where I wanted to.

I turned the prism and contemplated the tether of obligation to my mother when she was alive. We lived in different cities and no matter how frequently I visited, she invariably remarked, “You should come more often.” The burden is heavy when the standard is never enough. But this tether dissolved with her death. Without the harness of obligation I feel free to need her as my mother. From the Beyond she helps me. Our spiritual bond is profound.

Another turn of the prism illuminated my connection to my daughter. Contrary to the proverbial apron strings, this tether is never cut. Nonetheless she is 28 and happily married, and I have stepped back so that she can live her adult life as she sees fit. The cord between us has thus lengthened and attenuated, and this is as it should be in the natural course of the maternal-child relationship.
The last turn of the prism refracted my relationship with my husband. During my prolonged hospitalization after cancer surgery, I came to depend on him as never before, and in the midst of the arduous recovery I discovered how much I needed him. This newfound knowledge bloomed tenderly in my heart: I realized that needing him arose from deep trust, itself a product of deep love. It is a tie that binds, but one that is wholly welcome.

© Jean DiMotto, 2013   Website: www.jeandimotto.com

Saturday, August 11, 2012

Last Raps

I returned to work in mid-May, halftime for about six weeks. Although my physical therapist forewarned me, I was nonetheless staggered by how much energy I expended just getting to work. 

I had to shower every day, brush my teeth every day, fix my hair every day, apply make-up every day, get dressed every day, contend with traffic every day, and walk .2 mile down an incline into a reverberatingly noisy tunnel and then back up out of it every day before I finally arrived at my courtroom. Exhausting. 

I had lived my life at home in a more relaxed, shall we say, manner. And before that, during the first six weeks post-surgery, my poor injured mind couldn’t even conceptualize teeth brushing (see, Bumpy Postoperative Course: Mental).

I was warmly welcomed back which I very much appreciated. It was wonderful to again see my judicial colleagues as well as the prosecutors and defense attorneys who regularly appear in my court.

Still, I found myself longing for the pace and beauty of my life at home. It took nearly two months before I felt fully engaged again at work.
 
I discovered painfully that my vulnerabilities from all that I went through (see, Surgery and Bumpy Postoperative Course[s]) left me more sensitive and reactive than before.  At times this made for tough going in felony court. I noticed, for example, that when a witness lied, I actually felt it in a physical way. I pondered this awareness in order to find ways to regain dispassion.

Despite the struggles and adjustments, I feel happy and have zest for living. 

I fought for that zest while I was ill and wrestled it from the jaws of death.

I have it when my husband looks yearningly at me despite my altered physical appearance. I have it as I delightedly explore the craft of writing. I have it when I awake in the morning, and I have it when I retire at night.
                ~~~
This is my last post on this blog. Thirty seems like a good number to end with.

People from 60 countries have viewed this blog and there have been more than 11,000 page views. The page views continue to rise as new people discover the blog.

Thanks for reading and for being with me on this journey. 

I will initiate a new blog in due course; I haven’t yet finalized its focus and title. But I’ll let you know.


© Jean DiMotto, 2012   Website: www.jeandimotto.com

Wednesday, May 16, 2012

Zip-A-Dee-Doo-Dah

I received my test results today. 

All laboratory tests were normal and my CT scans were “pristine.”

Zip-a-dee-doo-dah, zip-a-dee-a.
My, oh my, what a wonderful day.
Plenty of sunshine headed my way.
Zip-a-dee-doo-dah, zip-a-dee-a.

My deepest gratitude to each of you for being part of the team effort that helped me heal!

I take this opportunity to especially thank John for his extraordinary vigilance, protectiveness and advocacy during my hospitalization, and his deep, tender and abiding love before and since; Anne for her steadfast love, bravery and determination; and Thomas for his love and support. 

© Jean DiMotto, 2012   Website: www.jeandimotto.com


  


Tuesday, May 8, 2012

Marking Progress

Yesterday marked 17 weeks since my surgery. At times, my recovery has seemed slower than the flow of Vermont maple syrup on a cold day. On the other hand, there is a medical adage that for every day spent in the hospital, one needs a week of recovery at home. Having spent 21 days in the hospital, I am a little ahead of schedule because I am returning to work for half days in two weeks, which will be the 19-week point. 

In reflecting on these past 17 weeks I have contemplated how progress is marked.  That brings another adage to mind: Everything a person recuperating from surgery does takes twice as much energy to accomplish than for someone who is unimpaired.  

Initially I was winded after climbing a flight of stairs, showering, getting into bed (true story), eating supper with my family, or doing five repetitions of a simple exercise in each arm. This was discouraging, but also a powerful reminder of how much I had been through. And it made thrilling the accomplishments of showering while standing (instead of sitting) and yesterday climbing two flights of stairs without being short of breath.

Another marker was being able to drive again, although I still tend to groan in discomfort when I get in or out of the car. Yet another marker was not needing a narcotic to relieve my pain and instead being able to rely solely on acetaminophen. Still another was making meals again, something I have not done for longer than I can remember.

I began physical therapy in April for up to eight weeks to correct my crooked left kneecap and build my strength, especially in my abdominal muscles. I was afraid I would never be able to regain any stamina, but they graduated me after only one month because I was doing so well.

John attributes my new-found energy to being well rested because I have faithfully used my CPAP machine for six weeks now, including during my afternoon naps. I agree. Who could feel energetic after stopping breathing 147 times every hour because of sleep apnea? (The respiratory therapist said mine was the worst case they had ever seen.) 

It is ironic that although I am much more energetic than I used to feel, I still need at least 10 hours of sleep every day. But everyone of l'age certain can be envious that I can drink a quart of water within an hour of retiring and sleep peacefully throughout the night because of my drainage system.

Yesterday, a major marker of progress was getting my medi-port removed. This was the device used to infuse all chemotherapeutic fluids (see, “So What’s Chemo Like, Anyway?” September 24, 2011). I hated that bump on my upper chest and what it symbolized, and was grateful that my oncologist allowed it to be removed. I was higher than a helium balloon when the procedure was concluded. 

I am eager to return to work after moving through a mild depression at leaving behind a rhythm of living that I came to love. I now know that I will enjoy retirement when the time comes.

© Jean DiMotto, 2012

Website: www.jeandimotto.com

Monday, April 2, 2012

Bumpy Postoperative Course: Spiritual

When the neurologist was evaluating my mental status, a woman who has been my friend for some 30 years was in the room. I didn’t recognize her. But on another occasion I did, and I spoke to her from deep within my soul. She came to visit me and remarked on how much better I looked and how much better I was moving. I replied, “But I am in the depths of despair.”

She recounted this to me several weeks after I was discharged home. I knew immediately what had happened. I had seen “the other side” and was deciding to continue my life on this side rather than give into death.

Steve Jobs’ sister said that as he was dying he was looking ahead at a certain spot and exclaimed, “OH WOW! OH WOW! OH WOW!” That’s how good it is across the veil and why the process of choosing to stay here meant wrestling in the depths of despair.

It was a brave decision in a certain sense because what lay ahead of me was six weeks of the most grueling, painful ordeal I have ever endured. I did not turn the corner in my recuperation until the week of Leap Day.

My belief is that purgatory is actually lived out in whole or in part here on Earth before death. Suffering is an integral part of that process of burning off the dross of our misdeeds, wrongful thoughts and sins of omission. Thus I also regard my depths of despair and my rugged period of initial recovery as a purgatory. 

Fortunately, I cannot recall those excruciating six weeks in much detail. I know the Visiting Nurse Association (VNA) had a nurse at our home the day after my discharge from the hospital and at least weekly thereafter. I also had a VNA physical therapist and a VNA occupational therapist who each came twice weekly. And John would take me to at least two doctors’ appointments every week as well. 

All these visits with healers buoyed me. The doctors and the VNA women each gave me a compassionate ear as well as expert information. They supported my progress as well as my sense of myself as a worthy and worthwhile woman. 

It is a genuine spiritual mystery to me how it was that so many people reached out to me with love, prayers, good thoughts, healing vibrations, and other gifts and cards.  There is not one scintilla of doubt in my mind that this was absolutely critical to my determined drive to live and to rise up through the pain and sorrow.

“Feeling the import of the possibility of cancer on the way home [from the doctor’s office], I asked for a sign. I saw the extraordinary: an egret standing by the pond in the parkway near my home. I felt soothed and grateful. This is all going to be okay” (see, “The Long and Winding Road to Diagnosis,” August 20, 2011).

But I did not expect it to be the journey I in fact have been living, what with chemotherapy, surgery and a shockingly slow recovery. I did not expect to pay this price.

Then again I did not expect to receive such abundant grace and know this depth of maturity. I am renewed, refreshed, reborn. And optimistic.

I appreciate the synchronicity with the great Christian remembrances of sorrowful Good Friday, restful Holy Saturday, and joyful Resurrection Sunday. I intend to meld all my suffering with the Crucified Christ on Friday, rest with Him on Saturday and rise to even greater spiritual joy on Easter.

© Jean DiMotto, 2012       Website: www.jeandimotto.com

Thursday, March 29, 2012

Bumpy Postoperative Course: Mental

“There are so many ways to be sick,” said the anesthesiologist. One of these is mental. After all that was done to me in surgery, ICU, and the postoperative room, and with so many days in a windowless ICU and then in a single postop room, my mind was injured.

There was a round clock in each of my rooms which provided the time but not whether it was AM or PM. Once a team of four came into my ICU room and the woman on the team greeted me by saying good morning. For some reason I had thought it was night, so her greeting perked my attention. I did my best to look intently at her and then intently at the clock on the wall, back to her, back to the clock. Several times. Fortunately she understood and said, yes, it is morning. That made me happy – a simple certainty I could know and depend on in a 24/7 environment.

They wrote the date out (e.g., January 14, 2012) on a whiteboard, but there was no calendar to provide the context for the date. This is akin to looking at a digital clock; to understand the meaning of the readout, one unconsciously relies on the context of a round clock. Similarly, I needed a calendar to make sense of the date.

My initial fog was from being under conscious sedation for more than three days. I became much more alert in ICU after that was discontinued. Still I had phantasmagorical dreams, one of which became a living, breathing reality at one moment. I thought I was at an exclusive birthday party for an exceptionally wealthy man and then asked John and the respiratory therapist if being where we were (right outside the main party room in a wheelchair, I thought) was interfering with the party.  Holy smokes!

This continued in the regular postoperative room even though I had many lucid hours in the ICU. I know I did not experience the transfer because I was sedated.  So I just woke up in a new room.  But I was dreaming fiercely and vividly, and I have distinct memories of five different rooms! I have clearer memories of what I dreamt than of consensual reality; at least half of the days in that postop room are lost to me. 

I dreamt my experiences. Seven days of arm restraints in ICU? Two dreams of being restrained in a room with others similarly restrained in beds. Electrocautery in surgery? A dream of a young man dressed in blue scrubs abusing me with an electric gun of sorts. Several ordinary, even ugly, IVs? Dreams of my IVs as clear little bottles, each a different and vibrant color of the rainbow.

As some of these dreams signal, I developed full-blown paranoid ideation, a form of “ICU psychosis.” 

My doctors called it delirium and attributed it to the pain medications, one of which I was surprised to learn I had been receiving because it has adverse effects on me. It became so bad that when I was again placed under conscious sedation for a procedure to stop a urine leak, I had what is known as a paradoxical reaction to one of the drugs: instead of sedation I became very agitated and loudly insistent that they stop the procedure before it was started. To avoid accidentally injuring me because of my state of arousal, they did, in fact, stop the procedure.

There was a psychiatric consult, a neurology consult, an EEG, a CT scan of my brain.  No “functional defect” was found, just a mind in search of its moorings at the same time that it was sure it was moored.

My first clue that something was amiss was when a nurse began asking me if I knew where I was. Oh-oh. She repeated the question about three or four times then switched to, “Are you at home?” Whew! A clue. “No.” “Where are you?” repeated several more times. Finally I figured out it was the hospital. “Which one?” Oh no! Right answers are bad; they bring more questions! I managed to figure out the health care system. “Which hospital?” I gave an answer based on one of my dreams. At least I was told the right answer after that.

I usually answered incorrectly the question about what year it was. I finally put together, however, that it was still January, not February, because the Super Bowl had not yet been played. Where all my goofy birth dates came from I’ll never know. And I gave the name of any president during whose administration I had lived.

It took much longer than my hospitalization for me to slowly come to terms with the fact that what I thought had been reality was dream-based. Well into late February I was asking John whether a particular event actually had happened. Since he was there with me in the hospital for all but three hours every day, he was an excellent resource for these reality checks. 
The care and healing of the mind is subtle and takes a long time. It cannot be concentrated on; that’s how a body heals. A mind prefers to be left to its own devices as it self heals. There’s no rushing it. There aren’t exercises with ten reps each. There aren’t special foods.

Still I did notice some improvement when I worked over a period of two weeks filling in the blanks (e.g., email or address) on my Smartphone “Contacts” list, checking them against some of John’s, adding some missing ones, proofreading the changes and editing them.

And finally, after nine weeks’ recuperation, I am able to write again.

© Jean DiMotto, 2012    Website: www.jeandimotto.com 

Wednesday, March 28, 2012

Bumpy Postoperative Course: Physical

I did well throughout the lengthy, complex surgery.

So it must have come as a surprise upon my being wheeled out of surgery into ICU that my blood pressure immediately plummeted. My kidneys were unhappy but my heart was really upset and showed its distress by leaking troponin, a cardiac protein. 

That was the beginning of an extremely complicated postoperative course where it seemed that nothing went smoothly. 

My heart’s troponin leak led to monitoring by a cardiac team as well as several cardiac testing procedures.

Since the hypotension was both volume and anemia driven, I was immediately given even more IV fluids than had been given during surgery plus two units of blood to counter the anemia. Later two additional units were infused to stabilize my red blood cell and hemoglobin counts. 

So much fluid is given during surgery, especially an extensive surgery, and with the additional amounts given to me soon afterwards to bring up my blood pressure, I had an enormous amount of fluid onboard. By my sixth postoperative day I had eliminated 25 pounds of water weight. If only that much body fat weight could be shed in six days!

Within hours of admission to the surgical ICU I developed a fever of 102 degrees. Not surprising since the three “dirtiest” fluids were all in the surgical field: urine (bladder removal), bile (gallbladder removal) and fecal fluid (bowel cutting). The source of the infection was apparently my kidneys. More antibiotic troops were sent in.

Pain was expected to be an issue given how extensive the surgery would be, so an epidural catheter had been inserted into my lower spine before the surgery. But my pain management team also placed me under conscious sedation for several days after surgery given at the least the extensive adhesiolysis (cutting of the scars). Even the pain of being turned in bed, a necessity for healing and preventing bedsore development, was excruciating. I was in a fog during such prolonged conscious sedation, and it was weaned by the fourth postop day in favor of IV pain medication.

I remained intubated and connected to a respirator for a week. When they first tried weaning me off the respirator my own breathing was too labored because of the fluid overload and continuing low blood pressure and high heart rate.

Hand restraints are protocol when one is on a respirator because it is believed that a person’s innate instinct is to try to pull the tube out. I don’t ever remember feeling like pulling out the tube, but my hands were restrained for seven days. I have no conscious memory of this. I do know that one nursing aide always removed the restraints when she was in the room. She also gave me memorable foot massages when she and a nurse gave me a luxurious bed bath.

One cannot talk when on a respirator. Communication was almost as challenging as pain relief. I asked with hand signals for something to write on and got a clipboard with paper and pen. This helped a lot except for how small my writing was. I don’t know why I couldn’t make it bigger although as I made physical progress I could.

When a lab tech came in to prick my finger for a blood glucose level check, I motioned for the clipboard. On it I drew a giant “Y” because I am not diabetic. It turns out it is now recognized that the glucose-insulin balance is often disturbed after major surgery. Thus this is standard protocol as is the subsequent injection of the appropriate amount of insulin. And I did receive a plethora of insulin shots in my thighs during my 21-day hospitalization.

What was terribly disappointing to me is that John could never figure out where I was going with something I was writing on the clipboard until I’d written it out completely which was often exhausting. Anne, the nurses, perfect strangers got it before he did. I wondered how someone so close to me couldn’t see where I was going with a thought or request. But it taught me how differently his mind and my mind work, which I am sure attorneys figured out long before I.

I remember the day they removed my endotracheal tube. The respiratory therapists had been increasing the amount of room air I was breathing in on my own until it was 100%. Just after a woman told me it might immediately need to be reinserted, the tube was withdrawn only to be immediately reinserted. It was only momentarily disappointing, though, because it was withdrawn a second time minutes later and this time it worked. I could whisper but my voice got stronger almost as fast as my smile got bigger.

I asked for water. Only ice chips, but I had a child’s glee in crunching those as loudly as I could. Then sips of water. Heavenly.

My nursing administration friend had copied and enlarged my self description and a photo and taped it to the ICU whiteboard and the door so when I was able to talk again, people knew who I was other than a foggy ICU patient. A precious gift.

I spent three more days in ICU (for a total of ten). These were transition days when, for example, I was observed and tested for my ability to handle solid food post endotracheal tube. This meant that a beautiful young woman came with several cold treats (e.g., finely pureed applesauce) and fed me spoonful by spoonful. She gently felt under my chin to see if I was processing the food properly. It was a much appreciated sensory experience for someone who hadn’t eaten since January 5 (11 days).


I was transferred to a surgical postop unit under sedation so I didn’t experience the transfer. Despite two different antibiotics, my white blood cell (WBC) count increased and I was confused so my medical team embarked on a full infectious workup to discover the source of the infection. They discovered an abdominal fluid collection and placed an abdominal wall drain. This gradually resolved the WBC problem. They also discovered a urine leak, but fortunately this was self healing.

When the epidural catheter for pain medicine was discontinued, I experienced three days of uncontrolled pain, drowsiness and irritable behavior toward physical therapy (PT) and occupational therapy (OT) folks. Some of the pain meds I was given were not ones that work on me and actually have an adverse effect on me, so that contributed to the roller coaster ride.

I stayed in the step-down unit for 11 days. There was a window in my room but the view was forgettable. Despite my resistance, PT and OT worked daily with me to help me learn to “launch” up from a chair to a standing position and to walk with a walker. And they supervised me on my discharge date as I dragged myself by the handrail up and down a staircase. Being able to do this was a condition of my discharge.

As much as my mouth wanted to eat food, my bowels just weren’t good at processing it, so I suffered too-many-to-count episodes of diarrhea while in a chair or in bed. It is humbling to be cleaned up by nursing staff but they were whizzes at it and I remain grateful for their practicality, their tricks for minimizing the soiling and their consistently positive, nonjudgmental attitude.

On the day before what became my discharge date, I underwent a cardiac catheterization because of the troponin leak. I cannot remember when I have prayed a “Hail Mary” as earnestly as I did on the way to the Cath Lab. The team who did the test was wonderful and so were the results: no ischemic damage, no abnormality of any kind.  

One of my anesthesiologists happened to see me dressed and waiting to go home. He stopped in his tracks and came into my room to tell me how wonderful it was to see me alert and bright-eyed. I told him it had been a difficult few weeks. “There are so many ways to be sick,” he said. Indeed.

© Jean DiMotto, 2012    Website: www.jeandimotto.com