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

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 more than 75 countries have viewed this blog. Thanks for reading and for being with me on this journey. 

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

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

  

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, or showering, or a meal, or doing five repetitions of a simple exercise in each arm, even just getting into bed. 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 am able to drink a quart of water within an hour of retiring and sleep peacefully throughout the night because of my new 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 have come to love. I now know that I will enjoy retirement when the time comes.

© Jean DiMotto, 2012

Website: www.jeandimotto.com

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 in to 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

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.

Nurses 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, attributing 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 incorrectly answered 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 when asked who the president was, 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 

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 scar tissue). 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

Surgery

I read the 12 single-spaced pages of operative reports to find out what happened to me in surgery on January 9, 2012. This was important to me in part because of the aftermath of the surgery and also because of the natural curiosity that comes from having my professional roots in nursing. In one respect the surgery was quite sad.

As a safety measure, once everyone was on hand, the nurse in charge in the surgical suite called a timeout before the first incision was made. During the timeout, the surgeons, nurses, assistants and technicians were identified; I was identified; my allergies were identified; the various procedures to be performed on me during the operation were identified; and written consent for each procedure was identified. What a great way to prevent confusion and mistakes.

I was surprised to learn that my urologist made the incision (I thought the general surgeon was going to start the operation). It was a midline incision starting a bit below the bottom tip of my breast bone with a detour to the side for my belly button and then straight to my pubic bone. The size of the incision signaled the magnitude of the upcoming operation.

My two urologists then worked in tandem to dissect from the skin down to the bladder because the first order of business was to remove my bladder. They stopped at “the discovery of severe scarring with electrocautery” in the area of the tattered first mesh.

This is the part about which I feel very sad. This scarring by electrocautery (a method to stop bleeding) is from a summer 2007 surgery to place a mesh for an abdominal wall hernia. The surgeon was represented to me as an excellent technician. Ha! I referenced him in my blog entry, “A Tale of Two More Surgeons” (December 2, 2011) as one who was disrespectful and uncaring and had left his bad attitude and energy all over my poor abdomen. Now I see he caused even more damage and I feel angry.

My urologist’s partner scrubbed out and the general surgeon, who is an abdominal reconstructionist, scrubbed in. He spent more than one and one-half hours using a scissors and other cutting instruments to cut apart the scarring and adhesions and free up my bowel. He also removed the remnants of the synthetic mesh.

No wonder my pain postoperatively was described as excruciating. My mental consciousness was “asleep” during surgery but my anatomy and physiology, which was experiencing so much cutting and being moved around, was awake. 

This brings to mind the anesthesiologist(s) and the wonderful work he did in tempering the pain during surgery and keeping me under anesthesia so skillfully for eight long hours, a very lengthy surgery.

The general surgeon scrubbed out and the second urologist scrubbed back in.  My bladder and pelvic lymph nodes were reached. These lymph nodes were removed for examination by pathologists and all came back clean. It is reassuring to know that no small cell cancer invaded them.

My bladder, however, had evidence of not only the initial tumor destroyed by chemotherapy but also a second tumor. The nerve! What this means is that within 10 weeks of my diagnosis, a second tumor formed and grew but then was annihilated by the poison of chemotherapy. What an aggressive cancer! Thank goodness chemotherapy was more aggressive.

After my bladder was removed, the urologists turned their attention to creating the ileal conduit. After they finished the majority of this work, my urologist scrubbed out and the general surgeon scrubbed back in to remove my gallbladder. Then with my urologist’s help they finished the ileal conduit and repaired my abdominal wall hernia by placing a new mesh made of biologic material. 

My abdomen was sewn back together by the general surgeon and the skin was stapled shut. As a result, my incision looks like a vine winding its way up my belly. Other views are that it looks like a railroad track or a map, but I’m sticking with a vine.

I did well throughout the surgery. A remarkable, complex surgery performed by a room full of remarkable professionals and technicians.

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

Physical Activity and Cancer

This post is a collaboration with David Haas who is the Family Hospitality Coordinator at Mesothelioma Cancer Alliance in Syracuse, New York. He has an abiding interest in exercise and its positive connections with health. But he also has gained some surprising insights from the research literature about the benefits of exercise in reducing susceptibility to some cancers in the first instance as well as for helping those coping with or recovering from cancer. Read on for David's research summary and then my experience with physical activity while recovering from surgery.

Colon cancer: Research has identified a link between exercise and a significantly reduced risk for colon cancer. In order to achieve the maximum risk reduction, however, one must engage in 30-60 minutes of moderate to rigorous physical activity daily. It is thought that exercise protects against the development of tumors in several ways, including regulation of insulin and other hormones. In addition, physical activity reduces the time the colon is exposed to carcinogens by maintaining proper body functioning.

Breast and uterine cancers: Studies show that these cancers can be reduced through exercise. Particularly in women who have not yet reached menopause, exercise can lower hormone levels, improve the body’s immune response and control weight. Studies nonetheless indicate that the connection between exercise and breast cancer may depend upon a woman’s weight and whether she received hormone replacement post menopause.  

Lung cancer: Research shows that men have reduced their susceptibility to lung cancer through exercise. (The results are less clear in women.)

Turning to those men and women who have developed cancer, studies indicate that physical activity can be beneficial. At least one study demonstrates that exercise can help slow the progression of prostate cancer in men aged 65 or older. Women who have been diagnosed with breast cancer may experience less fatigue and more energy through moderate exercise. One study even showed higher survival rates among these women. Physical activity also appears to reduce the chance of recurrence and increase survival in those with colon cancer.

When possible, therefore, the victims of mesothelioma are encouraged to exercise in order to help them deal with the effects of treatment. This statement seems to apply to anyone fighting or recuperating from cancer.

NB: A public statement released in 2010 by a panel of 13 researchers focused on the benefits of physical activity in dealing with cancer. The panel lauded the preventative and curative effects.  The results of numerous studies on this issue are included in a report entitled Physical Activity and Cancer available from the National Cancer Institute at www.cancer.gov.

I am glad that David interchanged the terms “exercise” and “physical activity.” As a former couch potato I still hate the word exercise. But the term physical activity has taken on a whole new meaning for me – one I actually embrace – in my recuperation from cancer surgery.

My Visiting Nurse Association physical therapist (PT) and occupational therapist (OT) had me doing some kind of physical activity during each of their visits despite my extensive and complicated abdominal surgery. It was as little as raising my arms above my head, doing exercises with my legs in bed or making shoulder-shrugging movements. All were very difficult at first.

Then they gently but firmly prodded me to use my walker to walk along the hall and around the free space in my bedroom. These are pretty confined spaces. But walk back and forth and around I did, first for one minute (I was so weak), then for three minutes and finally for a whopping five minutes. I would be breathing hard, a good sign that my heart rate was up which made other physical activity easier.

And – get this! – those 3- or 5-minute walker walks count toward the 20-30 minutes of daily exercise we are all recommended to log in. I thought I had to exercise for the full 20-30 minutes all at once. Plus, my doctor, my PT and my OT each told me that doing five repetitions twice a day was more effective than doing ten just once. 

These are sweet treats for recovering couch potatoes because they make physical activity doable. Thus I gradually got more active around the house, albeit it gently and to the extent my body allowed. I now putter around which gets me walking and going up and down stairs and from chairs. I reach into places and do arm exercises with cans of soup as weights. All of this is done slowly but definitely actively.

While this may seem like minor activity, all of it has incrementally helped my body as well as my mind to heal from my rugged, complicated surgery and its aftermath. So thanks, David, for reminding us that physical activity is every bit as good as exercise!

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

Valentine Vignette

I am mentally back in my writer’s chair and will be adding many entries over the next several months to tell the middle and final parts of my story. 

Meanwhile, given the date, I offer this vignette of my Valentine.

Not long after my discharge from the hospital and soon after we smoothed out the contours of an icky at-home procedure, I was wearing my “adult diaper” and a pajama top with hair tufts growing out all over my head post-chemo. My husband was wearing pajamas and kneeling at my bare feet sorting out medical bandages, bags and tubes. He paused for a slip of a second, looked up at me and said, “You are so beautiful.”

Jean DiMotto, 2012

Website: www.jeandimotto.com

Surgery’s Comin’ ’Round the Corner

On Monday, January 9, at 5:30 AM, I will be entering Aurora St. Luke’s Medical Center for surgery. They like us there early; surgery is not scheduled to begin until 7:30 AM.

On tap: Removal of my bladder (source organ for my cancer) and my gallbladder (because of gallstones) as well as my abdominal mesh. Then creation of a urostomy (the urinary equivalent of a colostomy) and sewing in a new and improved, premium mesh to prevent herniation of the incision. Anticipated length: Five to six hours.

I have been thinking about the contrasts between my two treatments for cancer, chemotherapy and surgery.

Chemo came in stages – four rounds of three days every three weeks. Surgery is one day.

Chemo got progressively harder and more challenging (the cumulative effect of poisoning). Surgery itself is the hardest day and every day after it is a little better with a measure of healing.

Chemo came in autumn as we approached the winter solstice and the darkness grew longer each day. Surgery comes post-solstice as the daylight lengthens a little more each day.

Chemo was dying and death (of cells). Surgery is healing and life affirming.

I sometimes wonder if depression and grieving are inevitable effects of chemo given all the cell death it causes. Each cell has a consciousness which is somehow – a mystery to me – part of our larger conscious experience. So how could one not be depressed and grief-stricken to some degree and at some level while immersed in these innumerable deaths?

I am getting my “Five Wishes” document in order. This is an unusual form of Power of Attorney for Health Care developed in concert with the American Bar Association’s Commission on Law and Aging. It is effective in 40 states, including Wisconsin. 

It not only allows me to specify health care preferences and an agent to make my health care decisions for me should I become incapacitated, but goes into realms emotional, spiritual and palliative.

For example, Wish 3 deals with comfort and identifies ten different comfort measures.  I simply cross out any that I don’t want. The measures range from “I want my lips and mouth kept moist to stop dryness” to “I wish to be massaged with warm oils as often as I can be” and “I wish to have my favorite music played when possible until the time of my death.” 

Wish 5 (What I Want My Loved Ones to Know) includes wanting family and friends to respect one’s wishes even if they don’t agree with them, wishing for mutual forgiveness, and wanting “my family and friends to look at my dying as a time of personal growth for everyone, including me. This will help me live a meaningful life in my final days.”

There are also blank lines for writing preferences for music or prayers at a memorial service, and for writing how one wants to be remembered should someone ask. That one is hard! Completing the pages is certainly an interesting and thought-provoking experience.

Sometimes when it is dark and I am alone, I feel my fear about the surgery. I cry. And then I focus on another of the song’s verses, “She’ll be riding six white horses when she comes.” My six white horses will be my three surgeons, the anesthesiologist, the nurse in charge of the operating suite and the surgical tech. What a team! I let go and let them take the reins.

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

When It Rains, It Pours

Or perhaps, when it snows it pours since we have a partial ground covering of snow today (“It’s beginning to look a bit like Christmas….”).  My Aussie son-in-law was thrilled to see it.

So much can happen in 24 hours. In one 24-hour period this week – just as my hair was beginning to grow back (I note with chagrin that the hair on my chinny chin chin raced back at a pace far exceeding that on my head and legs), just when I was beginning to feel more energetic, just when I abandoned my daily attire of bed clothing (to remind myself to reserve my energy for healing) and began wearing regular clothing – just then I was given three new diagnoses. My mother told me life wasn’t fair, but really.

The path to discovery started when one of my crack surgical team members did two scopes. The first was an esophagogastroduodenoscopy.  (My daughter remarked, “Holy Mother of Mercy, that is a mouthful.” Myself, I like a good 12-syllable word.)

It means that under conscious sedation with fentanyl (a narcotic pain reliever) as well as versed (a sedative and amnesic which – thankfully – makes one sleep and forget), a lighted tube (scope) is inserted through the mouth down the esophagus into the stomach right up to the duodenum (the beginning of the small intestine). The entire upper gastrointestinal (GI) tract is thus visualized.

This scope showed that I have a bleeding ulcer in my upper stomach near my esophagus. A bleeding ulcer! I have felt nothing. I drink strong coffee, albeit with cream, and have felt nothing. Or, with my luck of late, I felt it and mistook it for hunger pangs and ate. L 

Never having had this scope before, I don’t know how long the ulcer has been there.  But I suspect it is related to the muscular steroid Decadron that I received with each of my twelve chemo infusions and for a few days afterwards in pill form. And did I mention stress?

Next the colonoscopy was done. This involved the insertion of a larger scope in the rectum up through the large intestine to the ileocecal juncture, the joinder intersection between the large and small intestines. This scope showed that I had a large polyp near my bottom end. Honestly, how much more can be wrong with my body?

The surgeon believed the polyp to be non-malignant. This is corroborated by it not showing up on the PET scan in early September because a PET scan only shows “hot spots” – areas of increased metabolic activity (e.g., cancer). We’ll know for sure when the pathology report comes back.

Then I went in for a sleep study at a sleep medicine clinic. I stayed overnight in a lovely, sedate room done in hushed tones of blue. The technician fastened about two dozen electrodes with attached cords to my head and face and a few more to my chest and legs. When I moved my head I felt and sounded as though I had beaded strands of hair. For some reason I felt young again.

Then I laid me down to sleep and within a couple of hours the tech woke me up. This is because she had tracked at least 20 episodes of apnea (not breathing) in just one hour. Good gravy, that is lot of not breathing going on. 

What causes the apnea is my tongue lolling back against my throat. This closes off the airway between my mouth or nose and my lungs, and prevents my lungs from getting air (an apnea episode). This causes me to wake up just enough to take a nice, loud breath, resulting in major-league snoring, baby! (I am considering making a CD of my scary snoring sounds and selling it during the month of October.) 

This cycle goes on at least twenty times an hour! That’s an average of once every three minutes. No wonder I take so many naps – I am not really sleeping during most of the night.

So the tech hooked me up to a CPAP machine with a mask over my nose and mouth that pushes in humidified air with pressure. The pressured air stream competes with the tongue lolling and the pressured air wins. After that I slept for the better part of four hours straight and woke up – are you ready? – refreshed!

Thus my third new diagnosis: sleep apnea, a condition shared by ten percent of the population.  

So now I carry more diagnoses than Carter's got liver pills. Don't be jealous that I am way ahead on this score.

© Jean DiMotto, 2011  Website: www.jeandimotto.com 

Chemotherapy Remembrances

These past few days would have been my chemotherapy treatment days if I were still receiving it, and I found myself reminiscing about it. Several vignettes came to mind.

The senior nurse at my new infusion center who gently and matter of factly counseled that this was a time to be kind to myself.

The young nurse at my first infusion center who was injecting the diuretic Lasix directly into my IV line saying it would “tap” my kidneys.

The 80-year-old man at that center who had tumors in his liver, lung and brain. He was the gregarious, erstwhile owner of an insurance agency and would tell his life story to anyone who would listen but loudly enough so most of us heard it, repeatedly. He was the only patient who had the same chemo recipe as I did, so we were there for the same five hours and usually headed for one of the two restrooms at the same time – about 15 minutes after the Lasix “tapped” our kidneys.

A middle-aged woman at that center told me she had breast cancer and already had undergone surgery and radiation therapy. She said she cried like a baby when she realized she could not return to work in September as an art teacher for all grades in an elementary school because, given her compromised immune system, the risk of getting sick from exposure to the kids’ ubiquitous germs was too great.

A woman with lung cancer referred to one of her chemo drugs as “Cis-poison” (Cisplatin). Some breast cancer patients refer to Adriamycin, a clear red chemo agent, as “Red Devil.” But a young pathologist chose to call it “Red Sunshine” (also the title of her 2011 book) to reflect her positive attitude toward treatment.

A woman at my new infusion center told me she had lung cancer. Asked how many more treatments she had left, she responded, “This better be the last one!” Later, after a new bag of IV fluid was hung, she wheeled her IV stand out the back door and smoked a cigarette.

A couple came together to my new infusion center. He was a Vietnam veteran, and telling me that was enough to briefly bring those memories front and center. He was a large man who reminded me of a retired farmer. She looked like a pixie. He confided one day that she was “just skin and bones.” She slept during her chemo infusions. He sat next to her the entire time, no book or magazine, just his hands and his thoughts. “They also serve who only stand and wait.”  (On His Blindness, John Milton)

P.S. My high school friend’s energetic, I’ve-got-so-much-living-in-me-yet sister: http://www.pantagraph.com/lifestyles/health-med-fit/cancer-patient-knits-away-through-chemo-treatment/article_bc404a3e-21e9-11e1-8555-0019bb2963f4.html

© Jean DiMotto, 2011   Website: www.jeandimotto.com 

A Tale of Two More Surgeons

A man who reads my blog emailed me (jeandimotto@gmail.com) naming the reconstruction surgeon at the Medical College about whom I'd written on November 20^th.  He recognized him from the surgeon’s lack of respectful and compassionate interaction with him and his wife as well as the computer screen cuing him to convey all the “informed consent” information.

I have heard from women who told me they guffawed with other women about Dr. Your Vagina is the New Urethra or were deeply dismayed that someone like him exists in this day and age.

Meanwhile, my husband and I met with another Medical College physician who would be the one to remove my bladder (not one of the two who do the reconstruction). He had read my records and respectfully listened to me and my husband, clarified information, answered our questions and offered his opinions about my surgical options for a new bladder (the neo-bladder would not be an option because of my incontinence; he has seen good results with the Indiana pouch).

I then asked, “Assuming I have the surgery done here, who would do the reconstruction part?” Why, Dr. Your Vagina is the New Urethra, of course. Considering how obviously we had expressed to him our utter dissatisfaction with that surgeon, this was a remarkable answer. In fact, a deal breaker. And it belied his next, practiced, glib statements that he regards each of the two reconstruction surgeons equally and has no preference for one over the other.

What surgeons like these two at the Medical College fail to understand is that many patients are not looking for just a skilled surgeon. They also want one who is a good doctor. A good technician does not a good doctor make. A surgeon who cannot relate respectfully to a patient as a mature human being is going to leave that icky attitude all over the patient during the surgery. I know. It happened to me with the surgeon who placed the original mesh in my abdomen. There is a gulf separating him from my first surgeon who was both a great surgeon and a great doctor, as well as a gulf separating the kind of healing I experienced after each of those surgeries.

Journeying on, we next met with the surgeon whom my urologist wants as part of the team who would operate with her. (So many doctors, so little time.) 

His assistant scheduled a full hour for the consult. After shaking both of our hands, he touched my hand or arm periodically during the consult. He was energetic, animated, sat in close proximity to us and made eye contact with us throughout the consult. He himself has had two abdominal surgeries, so he knows the experience of being a patient.

He is one of about 100 surgeons in the U.S. whose skill set is dealing with complicated abdominal surgeries where the risk of bowel injury is higher than normal and where the abdomen needs reconstruction. 

He talked about my current mesh, and after a physical examination told me it needs to be removed both because it is no longer functional and also because of the high risk of infection if it is left in after this surgery. He asked permission to remove my gallbladder (with its gallstones) as long as my abdomen will be open and the mesh replaced afterwards. He indicated that he will use a new and improved quality of mesh.  

It was easy to like and respect him as both skilled surgeon and good doctor.  

And so I chose my urologist, Dr. Chesrow; her partner, Dr. Wood; and this surgeon, Dr. Armstrong; as my surgical team. Each of them is affiliated with Aurora Medical System.

I cannot describe my relief and sense of peace not just with finalizing my choices but also with putting myself in the hands of these three good surgeons and doctors. 

Surgery is scheduled for the early morning of Monday, January 9, 2012, at Aurora St. Luke’s Medical Center. 

And so I have five weeks to continue recovering from chemo (my nausea even at the end of the second week of my final round is fierce and unrelenting) and begin the pre-op preparation and procedures.

© Jean DiMotto, 2011      Website: www.jeandimotto.com

Under My Spiritual Umbrella

As a body suffers from illness, as illness wreaks havoc on emotions, what happens to the spirit? And what happened to it in the first place such that disease became a physical reality?

A spirit cannot take care of itself. It needs to be nurtured, gentled, uplifted, strengthened. It is interconnected with all spirit, which pervades all matter, and so it cannot exist in the illusion of separateness. I could not and cannot continue to manage during these months without the spiritual sustenance of family, friends and colleagues, whether here or across the veil.

It comes at any time. Several weeks ago as I began to slip into bed, I “saw” a white cloud about two inches thick spread out on top of the sheet for me. 

I feel it in my husband’s steady breathing and peaceful quietude as he sleeps, and as he holds me when I just can’t take any more. 

I have awoken with a smile and the distinct sense of a hand on my upper arm near my shoulder and know it is my mother. My daughter sacrifices her energy for me when mine is spent. My son-in-law checks several times a day to see if I need anything.

Spiritual sustenance is being "surrounded by dozens of thoughts each day” from my beloved college friend in Baltimore, the various prayer groups who regularly petition for me, the three women who periodically send me cards of encouragement, those who pray daily for me, the aunt who has taken me under her loving wing.

Support came in the healing circle which my friend and former colleague from Marquette’s nursing faculty created for me in her home so that I could receive affirmation and wisdom as I slog through the low, muddy ground. This circle was joined by friends of my husband’s family in North Carolina who together prayed aloud for me during that same time.

Every word of encouragement given directly, through John, through cyberspace or the mail helps to keep me afloat and the water warm. And I need every ounce, every gram, of this thoughtfulness because it is a long and bumpy journey, not least negotiating the health care system itself.

Now the second question: What happened to my spirit such that cancer became a physical reality in me?

My spiritual umbrella is large with a variety of transcendent beliefs existing harmoniously under its protective halo. One belief is that illness is not solely physical but also a spiritual manifestation. Another is that trauma suffered by an ancestor can pass down the generations until healed.

I can describe a peach as juicy. I can describe it as fuzzy (at least the ones I ate in my youth). I can describe it as sweet.  Each is accurate. 

I can describe my cancer physically as limited disease small cell cancer arising in my bladder. But how do I describe my cancer spiritually? I have not been able to identify this in contemplation. I needed someone who could describe my illness to me in spiritual terms so I could heal at that level as well. I chose a shamanic healer, Myron Eshowsky of Madison, Wisconsin, an internationally renowned trauma healer and author of Peace with Cancer (2009).

Both physically and spiritually cancer is an unhealed wound. With his spirit guides, Myron described my cancer as generational, related to the unhealed trauma of an ancestor who was raped and subsequently banished. (Who can argue but that this is the ultimate injustice – being banished because you were the victim of a brutal criminal act?) Have I suffered banishment in my own life, he asked. Yes, I suddenly realized. Four banishments immediately leapt to mind. 

Myron removed the spirit of my cancer, sang its song, then sang a healing song to it and took it into peace. I have work to do to provide a spiritual safe place for my ancestors now, which I gladly undertake.

But this did not completely obviate my suffering around banishment. I wept for myself that I suffered banishments through no fault of my own. I wept the pain of banishment for all my ancestors who were affected by it. 

Then I wept in a self pity that I was the one who was asked to suffer it for my ancestors. In the midst of such human tears I remembered the garden in Gethsemane and allowed a greater Will to guide my own. I became grateful that I could be the one to heal those who have come before me and those who will come after me. A Thanksgiving attitude of gratitude.

© Jean DiMotto, 2011    Website: www.jeandimotto.com