From the Mouths of Children

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In an era where many despair for today’s children an event happens that makes you think that just maybe today’s kids will turn out alright.

Yesterday my son-in-law’s mother passed away after a long bout with cancer. This morning my son-in-law found a note taped to his bedroom door written my my seven year old granddaughter. The note reads: “Dad, I know grandma was your mother. I want u to know this: She will always be in our hearts. Siena.”

I know it is natural for a grandparent to be proud of their grandchildren, but I couldn’t be prouder of my granddaughter than I am now.

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Coping When Your Spouse Has Breast Cancer

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At one time if you looked up Type A Personality in the dictionary you would find my picture. To say that I was a ball of stress was to put it mildly. However, I knew that living with too much stress was not good for me and I set out to overcome stress and my reactions to it. In an effort to overcome stress, mellow out and basically improve myself as a human being I read every self-help book I could get my hands on. I read everything from Dale Carnegie to Dr. Wayne Dyer. As I poured over these books and tried everything imaginable I came to the realization that was I was getting really stressed trying to overcome stress itself. Oh, there was some improvement but not as much as I wanted; not until I came across a book entitled Wherever You Go There You Are by Jon Kabat-Zinn . First published in 1994 Wherever You Go There You Are has made a big change in my life and it may literally have saved my life: more about that in a bit.

I have probably read the book somewhere near twenty times or more since I first read it in the mid-nineties. At first glance Wherever You Go There You Are seems like a book about meditation. Indeed, a large part of the book is taken up with meditation practices and instructions on how to meditate. But, meditation is just a tool that is used to bring about the state of mindfulness. Mindfulness can be a difficult concept to grasp and can be confused with the practices of Zen, Buddhism, and Taoism. There are similarities to those but mindfulness is in itself not a religious or moral philosophy. At its most basic, mindfulness is being acutely aware of your actions, yourself, your surroundings, your thoughts and your reactions to those thoughts. Once you get the hang of it, it is as though you are an observer; not only of yourself and things around you but also of your thoughts and actions. Those of you who are or were athletes can liken it to being in “the zone”. It is a state of non-doing; effortless effort; a state where there is no you or action being performed by you, it is as though all is one and any activity you are engaged in is unfolding by itself and while you are engaged in that activity you are somehow disengaged and have become an observer of the unfolding of that activity. I wasn’t much of an athlete but I do remember being in the zone during one particular basketball game in high school and later in life I remember being in the zone several times while playing golf, especially during the two holes-in-one I had.

The most important thing in cultivating mindfulness is making use of your breath to center yourself during times of great stress. According to the general adaptation syndrome one’s first reaction to a period of great stress is to either fight or flee. Mindfulness avoids both reactions by centering yourself on your breath and becoming an observer of what is happening and thereby avoiding what could be a catastrophic reaction to times of great stress. In the interest of brevity I will leave it to those of you who may be more interested in mindfulness to pick up a copy of Wherever You Go There You Are and decide for themselves whether or not it mindfulness might help them.

Now on to how mindfulness might actually have saved my life; if not my life it certainly may have saved my sanity.

In October of 2006 my wife was diagnosed with breast cancer. One thing was apparent from the start: no matter how hard I wanted to help, no matter how much I cared; when someone you love develops cancer of any form there is really nothing that you can do. Sure, you can try to comfort that person. You can be there for the person you love but the reality is that each person who gets a cancer of any form must face it in his or hers own way.

After the diagnosis my wife underwent a surgery procedure called a lumpectomy where the tumor was removed along with some lymph nodes. While she recovered from the surgery we waited for the results of the biopsy of the tumor. A few weeks after the surgery I accompanied my wife to her first visit to the oncologist. There we received the news that my wife’s form of cancer was a particularly aggressive form with a high rate of recurrence. She also test positive and very high for something called the HER2 receptor. The oncologist determined that my wife’s treatment needed to be as aggressive as the cancer and my wife would have to undergo a year of treatment to combat the cancer. The oncologist prescribed a series of radiation treatments, along with several chemotherapy drugs and an antibody drug to combat the HER2 receptor. On somewhat of a bright note her surgeon had done a good job in removing the cancer and the removed lymph nodes showed no sign of the cancer having spread.

If going to a cancer center in the hospital wasn’t bad enough the long walk down the hallway to the cancer center makes it all the worse. Once you reach the end of the hallway you enter the room where patients are waiting to receive their radiation treatment. It is pretty much a standard waiting room with the exception that it is packed wall to wall with people, all with cancer except for the few family members present. As I waited for my wife to get her radiation treatment I would sometimes talk to other patients awaiting treatment. Some were upbeat and open about their conditions. Others were resigned to having cancer and having to get the treatments that may or may not save their lives. There was one common thread: that was the feelings of the family members that were with the patients. For the most part the family members seemed to be at least emotionally suffering from the same mental state – one of helplessness. All would have gladly traded places with their loved one. But that wasn’t possible.

The treatment room at the oncology clinic was particularly depressing – at least to me. The room was one large open area with approximately 30 extremely uncomfortable recliners where the patients received their chemotherapy. The chairs were quite close to each other and there was no separation of any kind between patients. It was not uncommon to look across the aisle to see a patient being stuck with an IV needle and being hooked up to various sized bags containing the drugs prescribed for them. Being a bit squeamish I usually turned my eyes when a patient would be connected to their IV’s. The ones I found most disturbing were when a patient had to receive his or hers chemo via a port surgically installed in them or receive their chemo treatment via a needle in their abdomen.

My wife’s initial chemotherapy consisted of being connected to three IV bags which at the start took up to four hours to empty into her veins. My wife was able to take her treatments in stride and I as the dutiful husband went to her treatments with her. But, I at times felt that I was letting her down; not being able to do anything to make her chemotherapy more bearable.

The weekly treatments were interspersed with visits to her oncologist, follow ups with the surgeon and visits to various departments of the hospital for this test and that test. One of those tests was a thing called a MUGA scan (Multiple Gated Acquisition scan).In this procedure we had to once again descend into the bowels of the hospital and wind our ways through the labyrinths of the hallways that connect the outside world to the radiation center of the hospital. This test could not have been fun for my wife. She first had to have blood drawn. The blood was then treated with a radioactive material and was then injected back into her. Afterwards she had to lay perfectly still on a cold table so an overhead camera could check the condition of her heart. It seems as though one of the drugs she was being given had a history of possible heart damage and she had to have this scan every three months.

The weekly chemotherapy and intermittent tests were our routine for almost a year. My wife’s blood work showed that the chemotherapy was apparently working well and by October of 2007 we were looking forward to the end of her treatments late in December. Things were looking so good that she decided to buy a new car in October. God knows she deserved it. However she only got to drive it for a couple of weeks.

On October 27, 2007 my wife had an appointment with her primary care physician. Since it was just a standard checkup not related to her cancer treatments I decided not to go with her and stayed home. About two hours later I got a call from her. She said that she had fallen in her doctor’s parking lot and needed to go to stat care. I got in my car and drove to the doctor’s office which was only about five minutes away. When I got there my wife was sitting on the sidewalk with a sheet of paper in her hand. I asked what had happened and how badly she was hurt. She told me that she had slipped and fallen on a defective wheelchair ramp at her doctor’s office. She said that she had lain there for some time and when no one came by to help her she drug herself into her doctor’s office where her doctor examined her and gave her an order to have x-rays taken at stat care. To this day I am still mad as hell at her doctor for not calling the rescue squad and having her taken to the emergency room. Just looking at her with various cuts and bruises as well has what looked to be a broken foot should have warranted an ambulance ride to the emergency room. When I got her to stat care they did take her right in, checked her out and took x-rays. This is where the story gets me a little more upset. The x-rays showed that she did have a broken foot as well as a fractured shoulder bone and a dislocated shoulder. Instead of treating her or sending her to the hospital they gave her another piece of paper and told her to go to an orthopedic doctor. Incensed I drove her to Omni Orthopedics where her broken foot was put in a cast and her shoulder was popped back into place. I found a sympathetic ear in the director of Omni Orthopedics and he called the stat care facility and chewed them out for letting my wife leave in her condition. If there was ever a day from hell that was it.

A couple of days later it was time for her cancer treatment. This time the treatment was to be different. I had to wheel her into the clinic and help her into the chair for her treatment. If things weren’t bad enough for my wife when the nurse tried to connect my wife to the IV she couldn’t find a vein for the needle. Her veins had been shrinking from the numerous IV’s that she had to endure. Her veins were barely visible and so small that the nurse couldn’t get a needle in even using an ultra fine hypodermic needle. Two, three, four times the nurse tried – to no avail. Another nurse came and tried several times more. As I watched I wanted to cry out – “Here use my veins. Mine are large and getting a needle in them is no problem.” But no; following the principal of helplessness that governs the behavior of family members – no substitutions are allowed. Finally after what seemed to be eight or nine tries the nurse was able to get an IV into my wife and she was able to receive her treatment.

Later that evening after my wife had gone to bed I took my shower and sat down in the living room to relax a little. As I sat in the darkness a strange feeling came over me. At first it just seemed like a little nervousness but then the feeling took an unexpected turn. Slowly but intensely I began to feel as though all emotion was being drained from me. It seemed as though my very being was being sucked out of my body. I remember thinking “so this is what a nervous breakdown feels like.” It was then that I remembered the practice of mindfulness that I had been working on. With what I had left in me I began to concentrate on my breathing. Just watching and experiencing my breath as it went in and out. I went into the mode of an observer, watching what was going on with my body and my emotions. No panic. No resistance. Just watching. Observing without emotion. Slowly the feeling of being drained subsided. Still watching my breath, normalcy started to return. It seemed like a lifetime but it probably only lasted a few minutes. I am sure that had I panicked and given into the fight or flee response of the general adaptation syndrome I might possibly not have made it through that episode and might actually have had a nervous breakdown.

About two months later after my wife’s treatments for cancer had finished and she was about to start physical therapy for her injuries from her fall she caught pneumonia and spent a week in the hospital. One evening after a particularly stressful day trying to deal with an hospitalist doctor with an attitude I headed home. That night as I sat in my chair the feeling of my very essence wanting to leave my body came back again. But this time I recognized what was happening and was able to deal with it much more easily. Early on I concentrated on my breath and went into observer mode. This time the feeling was much less intense and didn’t last nearly as long.

Shortly after my wife had regained her health. My mother was diagnosed with a form of leukemia that would eventually take her life. During this time another minor occurrence of this feeling returned, (See my blog Watching Momma Die). From the time my wife was diagnosed with breast cancer and the death of my mother was a period of almost three years. Three years of hell that I don’t think I could have coped with had it not been for Jon Kabat-Zinn’s book.

Wherever You Go, There You Are has changed the way I deal with difficulties in life both big and small. No longer do I throw wrenches against the wall when I can’t fix something. Nor do I curse and swear anymore while trying to make sense of the directions that came with my new gas grill. (Those inscrutable little Chinese, print equally inscrutable owner’s manual). I can now take almost anything with equanimity.

Even such a calamitous event as the July 19th deluge that hit our area and backed up the sanitary sewer into my basement didn’t cause me to lose control of myself. As my recreation room turned into a pool of sewer water I simply focused on my breath and became a nonjudgmental observer. I looked at the sewage coming up through my floor drain and calmly observed it without letting it control me. Trouble was I was so wrapped up in being an observer that I didn’t observe that water the was now up to my ankles and it was then that I remembered the electricity was still on. Sometimes fleeing is still an appropriate response.

Watching Momma Die

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A little less than two years ago my mother, Mirma Palosi, passed away at the age of 88. The passing of an 88 year old woman is usually of little note except to family and friends and the passing of anyone 88 years old is not to be unexpected. While her actual death is not newsworthy the manner in which she died bears telling.

During her 88 years my mother pretty much lived her life on her terms, as she saw fit. Working at a physically demanding job at the Sugardale Meat processing plant she supported three children without any help from anyone including her ex-husband. She retired from Sugardale in 1983 and possibly could have not worked again. But being a person that liked to keep active she found that retirement was not for her and after a few years went to work at the Massillon Kmart where she eventually finally retired at the age of 87 in January of 2008. In truth my mother worked until age 87 not only because she wanted to but also because she needed the money to pay for her bingo addiction. It was not unusual for her to drop a hundred bucks or more at bingo. We never said much to mother about her gambling habit because we figured that she was independent, paying her own way and not hurting anyone. Besides, it made her happy and after supporting the three of us she deserved to do what made her happy. She also derived great joy from her grandchildren and two great-grandchildren. Even in her eighties she always had a twinkle in her eye and was a vibrant fully alive human being.

All that changed shortly after her retirement. At the time of her retirement she said that she was feeling tired quite a bit and that it might be time to slow down. In the months following her retirement her tiredness increased to the point where she became concerned and mentioned it to her doctor. At first he gave her some vitamin B and a prescription or two to help her feel better. When that didn’t help he ordered blood tests to try and figure out what was making her tired all the time. When the blood tests showed an high number of abnormal white blood cells her doctor referred her to the cancer center at Aultman hospital. The doctors there ordered more tests after which she was given an appointment to see an oncologist at the center. Her appointment was on July 24, 2008. When it came time for her to go to her appointment she asked me to go with her and as the eldest son I agreed to do so. However I did so with a little hesitancy since two years before I had taken a similar trip with my wife down the same long hallway to the same Aultman cancer center. As we entered the hospital we didn’t have to ask directions to the center since I was all too familiar with the center from my many trips there with my wife. I quite likely could have made the walk with my eyes closed.

When we were called back to see the doctor I was pretty sure the news was not going to be good. In a professional, almost abrupt manner the doctor told us that her tests showed that she had chronic myelogenous leukemia (CML), a cancer of the white blood cells. The doctor said that with treatment he had many patients survive for up to five years. At age 87 most people would be content with an additional five years, especially with good health. However as we would soon learn that any additional time for a person with CML comes with a price. A price that I am not sure was worth it. The first drug the oncologist prescribed was a drug called Gleevec. As usual the prescription came with the obligatory list of possible side effects. These lists of possible side effects are most likely prepared by the drug company’s attorneys with the intention of not only informing patients taking the drug of possible side effects, but also to protect the drug company from possible law suits. In my mother’s case the side effects listed turned out to be visited upon her in a most terrible way. Shortly after starting her drug therapy my mother developed severe pain in her legs. She quickly lost her appetite and was unable to do much including going to her precious bingo game. She stopped driving and family members did all her errands and took her places that she needed to go to. Trips to her primary care doctor and the oncologist became more and more frequent as she sought relief from the debilitating side effects of the drug she was taking. Trying to fight these side effects involved taking more and more drugs to try and make her feel better, but nothing helped. Eventually the oncologist switched my mother to a new drug – Sprycel. Sprycel did help the pain in her legs a little but not her other symptoms. Her appetite continued to diminish. She now could hardly eat or drink anything without nausea. Mom was a small woman to start with who never weighed more than 120 pounds in her life. Within two months of starting her drug therapy for this horrible disease she was reduced to less than a hundred pounds. I remember joking with my mom that she shouldn’t have retired. As long as she was working, even into her late 80’s she felt fine, but as soon as she retired this sickness was befell her.

In February 2009 a new phase in the progress of the disease started. In early February I got a call from my sister saying she had taken mom to the emergency room. Mom’s inability to eat or drink had weakened her to the point where she needed hospitalization. Once in the hospital she was given fluids to rehydrate her and oxygen to help her breathe better. This was the first of a series of trips to the emergency room that were to take place in the following months.  About this time, mom sensing what was to come started to give away her most prized possessions to members of her family. Mom never had a lot and what she wound up giving to her grandchildren and great grandchildren were mostly trinkets of only sentimental value. I think giving family members these items was mom’s way of hoping these small material things would help her loved ones remember her. During this time the family tried to keep mom active as much as possible. My sister would take her shopping and I would take her to lunch with her sisters which she enjoyed very much even if actually eating a meal was a struggle for her.

Around June the trips to the emergency room became more frequent and the duration of her hospital stays became longer. She really needed to be in a nursing home where she could get constant care, but mom was an independent woman for all of her 88 years and we acquiesced in not forcing her to go into a nursing home. She wanted to stay in her home and remain independent to the end.

In the middle of July mom called me and said that she needed to go to the emergency room again and would I take her. As I drove to pick her up I called the immediate family and told them that I was taking mom to the emergency room again. By this time we had all gotten used to these trips and we thought this trip would turn out the same as the trips before. We expected that she would be given the usual treatment and be sent home in a week’s time. And indeed it did seem that was to be the case. After a couple of days of treatment she had perked up to the point where she was sitting up in bed, was smiling and talking and even a little of that old twinkle was back in her eyes. When I walked in to see her on the third day she was in such good shape that I promised I would personally take her to her favorite bingo parlor after she got out of the hospital. It was a promise that I would be unable to keep. A couple of days later a little before 7 AM I received a call from her primary care physician; he had just gotten to mom’s room as he was making his rounds and he found her to be having great difficulty breathing. He had called the rapid response team to take her to the intensive care unit and said that I should get down there as soon as possible. I quickly called the immediate family and headed to Aultman hospital. When I arrived at the I.C.U. I was met by a group of doctor’s and a business representative of the hospital. The doctors explained mom’s condition to me and said that she had 16 hours or so left. They asked if mom had a living will and if I had a medical power of attorney to make decisions for her. When I left home I had a bad feeling about this call and jammed both documents in my pocket which I now presented to the doctors. Mom had left specific instructions that we were not to keep her alive by extraordinary measures – especially any sort of artificial life support. She had also told us that she didn’t want a large group of people standing around her bed in her final hours. This was a request that would soon be ignored. It wouldn’t be long before all the children and grandchildren would be surrounding her hospital bed.

When I entered her room I found her asleep, breathing slowly and wearing a clear plastic oxygen mask. She must have sensed my arrival as she awoke and looked at me with alarm in her eyes. She futilely tried to remove the mask and the nurse came in, told her to keep the mask on and tried to calm her down. Mom reached up, grasped the side of the mask and managed to move it enough to say something to me. In a voice just barely audible she asked “How much longer?”  I wasn’t able to answer her. All I could do was reach out, touch her hand and say “try to rest.” I wish I could of thought of something inspirational to say, but I couldn’t. All I could do was to hold her hand as if that might comfort her. As I held her hand I remember thinking that it was like I was just holding a skeleton of a hand encased in a loosely fitting glove of skin. This terrible disease had wasted her away to almost nothing – literally not much more than a bag of bones. During the next few hours the rest of my family arrived and filed into the room.  Around this time the nurse started giving mom morphine to ease her pain and she drifted off into unconsciousness. As the hours went by her breathing became slower – at times stopping for a brief moment in a preview of what was to come.  Daytime turned into darkness as family members would filter in and out but I stayed by her side – the dutiful eldest son. Late in the evening we were able to contact the priest from St. George’s Greek Orthodox Church and shortly before midnight he administered the last rites. Mom had often told us that she didn’t want a priest to give her the last rights. This was the last of mom’s instructions that I would ignore.

As I watched the sun rising out of the window in mom’s room her primary care physician came into the room, looked at the monitors and in a surprisingly matter of fact manner said, “It won’t be long now.”  He then turned and without saying another word walked out of the room. I stood there awhile looking at the monitors wondering what he saw and I decided to go tell the other members of the family who were in the ICU waiting room that if they wanted to say a finale goodbye they might want to come into mom’s room. Some of them had gone down to the cafeteria for breakfast and as others went to get them I went back to my mother’s bedside. As I walked into the room I stood at the foot of her bed and looked at her. After a few moments I looked up at the monitors just at the exact moment her brave heart beat its last. The lines of the monitor went flat as if to officially let me know that the end was there. It was the only time I had ever been present at the moment of death of someone and I remember thinking how casually her life left her. There was no death rattle, no involuntary body spasms to dramatically signal the end of her life. If I had to pick any words to describe that moment they might the words from the Peggy Lee song “Is that all there is?”

The actual moment of my mom’s death at 7:50 AM on July 23, 2009 was anticlimactic. In reality I had been watching her die for almost an entire year. She died one day short of the one year anniversary of the day we received her diagnosis of having CML. For 87 years mom lived life as a  fully alive human being. Her vibrancy and joy in living was taken from her in a way she did not deserve. This insidious disease that  took her life was not worthy of her. The slow, painful withering away of one who lived so fully was not appropriate. She deserved better. Now her suffering was finally over and maybe as people are prone to say – she is in a better place. I don’t know if that is true or not. All I do know is – we miss you mom.