Mastectomy Scars

    For a culture that seems to be built upon the worship of big breasts, it is really weird to have a mastectomy with no reconstruction.  It is just GONE! There is nothing there but a long, gruesome scar. I look like the bride of Frankenstein waiting for a spare part.  The literature tells you to avoid the lightweight bra fillers and go for the heavier, more realistic silicon prostheses if you still have one breast left. Apparently being unevenly weighted can cause balance and back problems. Who knew breasts performed such vital functions?

Unfortunately the pathology report on the tissue removed showed cancer in 2 of the 4 lymph nodes that were taken and showed some small, but cancerous tumors. None of this showed up on the PET scan, so when they told me I was cancer free, they meant except for the no-see-ums that were too small to show up. I had gone out of my way to prepare others and myself for the possibility of not getting all the cancer. However, knowing that it is still there after so many rounds of chemo and surgeries, really pops my balloon.

He didn't take all of the lymph nodes for fear of lymph edema (extreme swelling of my left arm - think Popeye) which irritated me because I'd rather take a shot on getting it all and deal with the lymph edema than do a half-way job and take a chance on leaving some cancer. I realize that since it was in the lymph nodes and because they found several small tumors, that it is probably systemic. That means I'll be on chemo or radiation for the rest of my life. My best hope is to get into a program using genetic matching to try to find a chemo drug that will attack the cancer only and not everything else.

Even though I knew the chances were 1 in a million for a cure, it is still a blow to acknowledge that there is cancer running around in my body just looking for a place to lodge and grow. I need to figure out how to live under this new set of circumstances. Up until now, I have just been dealing with the illness, the chemo,  the surgery, the drain tube, the scar, and the hope that it would go away. My life has to be more than just reacting to treatment and preparing for the next step. I have to develop a new normal that includes treatment but isn't driven by it. My life will be with cancer it will not BE cancer.


   

Legacy

    

       My husband John and I just returned from attending the induction of the1969 Colorado School of Mines (CSM) football team into the school’s Hall of Fame and to attend festivities planned around the naming of the new football stadium for the coach of that team, Marv Kay. The 1969 team was Coach Kay’s first team and had pulled off some amazing and unexpected victories. My husband was a freshman back-up quarterback on that team. Kay built upon that experience by going on to coach and serve in the athletic department at CSM for 46 more years.  He also spent part of that time serving as the mayor of Golden, Colorado where the school is located.  Don’t feel embarrassed if you have never heard of this school. It is a small school dedicated to primarily producing engineers. Think of a football team made up entirely of engineering students. They were not your stereotypical group of “jocks” but that’s another story.

At a dinner in his honor, Coach Kay’s former players brought us to tears and laughter with their inspirational stories about him. It became pretty obvious that this man had made an incredible impact on the school, the town, and especially, his players. It was heartwarming to see men in their mid-sixties talk about how this coach had affected their lives. However, the most amazing story this weekend was about another coach. It was a story that was almost never told. 

At the end of the fall semester in 1969, my husband, John, gave three of his football buddies a ride from Golden, Colorado to his home in Big Spring, Texas. His friends Bob, Steve and Dan were then planning on hitchhiking from Big Spring to South Padre Island. Those plans changed when the three of them got thrown in jail for possible involvement in a stabbing in Big Spring.

Apparently three big guys trying to hitchhike out of town at the same time of a stabbing had stirred up some suspicion. They told the police they knew John and his family. Coach Cliff Patton, John’s dad, had played professional football for the Philadelphia Eagles in the 40’s and 50’s and was currently teaching and coaching at the local high school. He was very well known in Big Spring and his vouching for the boys was all that was needed to spring them from jail.  Being somewhat of a hell-raiser himself in his youth, Coach Patton recognized a kindred spirit in Bob. Patton drew on his years of working with students to recognize the potential for both trouble and greatness in Bob. Rather than let the boys continue to hitchhike, he offered to drive them to San Antonio, which was more than halfway to South Padre 

Bob had some concerns over continuing to play football at CSM so on the way, John’s dad drove the boys to San Angelo State College where he arranged for Bob to meet the athletic director and football coach. While Bob decided to go back to CSM to play football, he never forgot the time and effort Coach Patton devoted to him. He especially appreciated the counsel and understanding. Coach Patton was dedicated to helping kids. He had the ability to get to the root of a problem rather than just react to the symptoms. He was special not only to his football players but to his PE students as well. The kids loved him and knew he was someone they could trust. According to Bob, those two days with Coach Patton affected his life more than any other adult in his life. 

John did not return to the Colorado School of Mines that next semester opting to transfer to Texas Tech to study biology instead. He ended up getting his Ph.D. and became a research scientist. Bob completed his degree and was a professional rugby coach for 40 years. However, Bob and John lost track of each other and Bob wondered if he would ever get the chance to tell John how much his dad had done to help him turn his life around. Neither John nor Bob ever thought that opportunity would occur nearly 50 years later at the Hall of Fame festivities. Despite the number of years since they had seen each other and the fact that John’s dad had died 17 years earlier, Bob was grateful to finally be able to tell John what his dad had done for him and how it had affected his life. John’s dad never knew the impact of his decision to spend those two days trying to help turn a young man around.

This story was particularly touching given the many personal testimonials we had just heard given for Coach Kay. As a high school guidance counselor, I knew I could get a lot farther with a kid’s coach than a parent when I needed that student to start getting serious about grades.  Often a coach, athletic trainer or teacher would come to my office asking me to follow up on something he or she had heard about a particular student. Far too many times, school personnel were the only family these kids had. Thank God that the people who gravitate to education are people who go that extra mile for their students. I am still waiting for the teacher accountability instrument that is able to measure not only the amount of empirical knowledge an educator is able to transfer to a student’s brain but the extent to which other intangibles are taught in the classroom or on the playing field like trust, understanding, caring, integrity, character, stability, and validation.

In one of the inner-city schools in which I worked, the head custodian was the most informed person there as to which students were homeless, hungry, pregnant, abused, depressed or overwhelmed. She did her job well but she also made time to develop relationships with the kids. They all knew and loved her and for some, she was the closest thing to a parent they had. She was in my office every morning with a run-down of students I needed to talk to that day. I welcomed her daily visit because I knew the information she gave me was solid, her instincts were “spot on,” and the kids trusted her.

When I hear of teacher shortages, union bashing and the idea that asking more of teachers will “fix” what is wrong with education, I don’t know how to start telling people that all of this is based on a faulty premise. If the premise is wrong then everything built upon it is wrong. Trying to pick one element to blame for the low scores of American children is to deny that truly serious problems that are outside the control of educators affect whether or not a child can learn. Rather than blaming teachers, it is time to recognize that our teachers are what are right with education, not the problem.

I spent nine years at a Blue Ribbon school in an affluent suburb of Indianapolis. When accountability standards were introduced, administrators went crazy because there was no way they could meet the improvement requirements. The school’s performance numbers were already at the top.

I have also worked in schools located in low-socioeconomic areas where the performance numbers were dismal and the improvement requirements were unattainable without some major changes in conditions that existed outside of the school’s control. . The differences between the two schools had nothing to do with the teachers. I count those teachers as friends and honestly believe they are all incredible teachers. However, the teachers at the “good” school wouldn’t have lasted a week in the inner-city school, not because of their abilities as teachers but because they did not have the experience required to teach in terrible conditions. The teachers in the inner-city school have gone without raises now for five years due to accountability requirements and budget cuts while the teachers in the suburb school have continued to receive salary increases. What is wrong with this picture? If you knew that your salary depended upon the test scores of your students…

Where would you rather teach?

 School A - High socio-economic area.   -or-  School B -Low Socio-economic area                                            

a) Parents value education, grades, and rigor. Parents likely have a college 

    degree.        

-or-

b) Parents had a bad experience with school and didn’t get along with their

      teachers.

a)     Students are expected to behave in a classroom and respect the teacher. 

-or-

b) Students do not know how to “do school.” Profane language, violence and

      disrespect are allowed at home. Parents side with their kids against the 

      teacher over behavior problems.

a) Students grow up believing that there is a direct correlation between the 

     number of years in school and income or perceived level of success.

-or-

b) No one in the family has ever graduated. The richest guy in the neighborhood

      sells drugs and/or pimps, engages in violence and is  abusive and exploitative 

      of women.

a) Parents make their children come to school and do their homework. They talk 

     to teachers and know what is going on with content and grades.  

-or-

b) Parents don’t know where their kids are but assume they are in school. Often  

      students are enrolled to fulfill the requirements for social security and the  

      day after the paperwork is sent, the student stops coming to school.  Even the

      most gifted teachers can’t teach students who aren’t there.

a) Students come to school knowing where they will sleep that night, that their

     clothes will be clean, and that there will be no lack of food or resources. Their

     physical needs are met. 

-or-

b) Students can’t tell you their address as they are living with friends or family 

     and are never sure how long they will be allowed to stay. I’ve done laundry  

     for students who wouldn’t come to school because their clothes were dirty 

     and smelly.

a) Students feel as if they are preparing for the future. They expect to live at the

     socio-economic level of their parents. They may never have seen a dead body 

     or attended a funeral. They expect to go college, get a job, get married, and 

     own a home.

-or-

b) Students have seen family and friends die violently and they don’t expect to 

     live long. Neighborhoods are not safe. Crossing a gang boundary can make 

     going to Dairy Queen a life or death decision.

.                                      

a)  Students started their education as 2 year olds in exceptional pre-school

     programs. Parents are able to provide enrichment experiences such as travel, piano lessons, tutoring, technology, etc.  

-or-

b) Parents are less educated and have less money so they are less likely to be able 

     to help with enrichment experiences.   Poor grammar is learned at home 

     making it difficult for students to change habits of speech when at school. 

     Children write as they speak making poor grammar an even more difficult 

     hurdle to overcome.              

The differences between School (a) and School (b) are socio-economic, not racial. 

Parents spend the first 4 to 5 critical years with their children and then as much time with them as the teacher in elementary school(1/3 home, 1/3 school, 1/3 asleep). However, the elementary teacher is shared with 20 or more other students, lunch, recess, and, of course, teaching time. They don’t have time to teach children how to behave, how to value education, or how to correct the type of English spoken at home (unless it is in an English as a second language class). 

Hopefully, when there are indications of possible learning disabilities, schools are able to intervene with testing and diagnoses. If that testing results in an Individual Educational Plan or a “504” Plan, then the teacher has to abide by specific instructions on accommodations made for that particular child. Teachers are expected to teach to many different learning styles as well which means that each concept must be presented in a way best received by a child who learns primarily through verbal, mathematical, kinetic, musical, special/linear , interpersonal, intrapersonal, nature, and existential ways of thinking. (Howard Gardner) Add to all of this, the extra time now used for testing and there is little time for teaching not to mention, individual time for your child. 

In high school, your child is likely to be 1 of 200 students on the teacher’s caseload and shared with 30 other students in a 55 min class. Do the math.  How much time does any teacher have to make an impact on any child any more?  I’m not saying that the individual plans aren’t good, in fact, I think they are a great way to level the playing field. I do however, think that a realistic look at time, children’s needs and the ability to provide teachers to meet those needs to be re-evaluated without relying on some kind of magic. We all know that other countries go to school more hours and not everyone goes to college. Vocational and technical schools abound as do community colleges. There are also military options, apprenticeships and internships.

To judge the efficacy of the teachers at both of these schools without adjusting for the factors listed above is ridiculous, unfair and invalid. Teachers must not only know what and how to teach but also know how to diffuse the negative factors listed for school (b) so that learning can happen. They will get lower scores than teachers who walk into a classroom of students prepared to learn.

   

President Johnson’s “War on Poverty” saw the installation of several “Head Start” programs. While producing advances in the early grades, researchers found that those encouraging early results were lost by the 4^th grade.  Unless we can provide constant support to overcome the factors  in school (b) or better yet, get rid of all the socioeconomic and cultural barriers to education, students will eventually still fall victim to them.

The legacy of “No Child Left Behind” was to add teachers to the lists of the reviled, unappreciated and disrespected. Many excellent teachers left the profession and the adversarial conditions that resulted from NCLB policies made education unattractive to college students who could go into other more lucrative careers. Consequently, several states began to experience teacher shortages. Government ignored those in the trenches with the most knowledge of what needed to be fixed and hired business professionals who promised to make education accountable in the same way that businesses were held accountable.  What NCLB didn’t realize was a major difference between education and business.

I was in the business world as a salesperson and retail manager for 9 years and as a small business owner for 7 years. The business model will not fit education unless, like in business, we have control over the quality of the raw material. As long as our government holds to its commitment of providing a “free and appropriate” education to every child in the United States, we cannot pick and choose those children who are most likely to make our numbers look good and refuse to educate those who won’t. When scores from the US are compared to other nations, at the secondary level, we are often comparing ALL of the students in the US to an elite segment of students in other countries who have been tracked for university level education. .

When I was in the piano business, only the finest Sitka spruce was chosen for the soundboards of the best pianos.  The quality of the final product was intrinsically tied to the quality of the raw material. Socioeconomic levels tend to create pockets of people who suffer from a higher concentration of the factors for school (b) on the list above. It only makes sense, given the types of problems listed, that schools in lower socio-economic areas are going to have students with lower scores. This does not mean they are inferior, it means that their circumstances are inferior. Until we have the courage to identify the real problems, millions of dollars will be spent on solutions that are politically correct but very, very wrong.

When you have a hammer in your hand, everything looks like a nail. If some kids can learn in the same classroom as some who can’t, it only makes sense to look at the differences between the variables aka students rather than attacking the constant factor aka the teacher. Given the enormity of the problems in school (b), it is much easier and more politically palatable to hammer teachers into the ground than to try to attack the real problems.  The fallout from this approach however is the loss of the Coach Pattons in the world. Teachers are not trained to be surrogate parents, custodians are not trained in suicide prevention, coaches aren’t expected to spend two days of winter break trying to counsel a kid headed in the wrong direction, and guidance counselors aren’t told they may find themselves doing laundry to get a kid to come to school. After such a heartwarming weekend and the surprise story about John’s dad, it is even sadder to think that the Cliff Pattons are the very people we are running out of education.                

Now what?

I've gone through 6 months of chemotherapy and a total of 9 months of not knowing what the hell comes next. I just realized that it is difficult to be happy without being able to indulge in the fantasy of immortality. We know we are all going to die but it never fails to amaze me how people without terminal disease like to proclaim "we're all going to die" as if I don't have the right to view my life differently given a prognosis of 2 years. I just want to ask those people if their comfort with the idea of dying is sufficient to have them trade places with me. Would they be less likely to proclaim the fact that "we are all going to die" if they really knew their days were numbered. We may all be knowledgeable of the fact that we are all going to die but let's admit it, none of us really believe we are going to die anytime soon. I hate being dismissed by that statement.

It's time to put some structure in my life.  I need a job. I need the energy to do more than keep track of medical bills and insurance claims all day. I need to be able to take care of my parents. I want my parents to know that they are loved and have a child dedicated to making their last years secure and comfortable.  I want them to know that I will always be there for them like they were for me.

I want my kids to know that they are more important to me than anything and that I will do anything to help them.  I need to be able to help my kids pay off their school loans so they can afford to have my grandchildren (or in David's case, afford to date so the process can at least begin).

I want my husband to know how very much I love him and how I want him to be able to count on me to take care of him if his Parkinson's gets worse. I want to see his grandchildren Caleb and Logan often and for both John and me to be part of their lives. I want to be able to leave him in a financially stable position.

I want....and so it goes. I hate being powerless.