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.

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: 

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 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:

Tuesday, March 27, 2012


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:

Friday, March 9, 2012

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
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: