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