Tuesday, March 14, 2017

My Celebration Continues

Yesterday, at my normal three week infusion appointment of TDM-1 (treatment #63 overall, #46 of TDM-1) I received my printed report of my February 20th CAT scan.

I keep looking at the words finding them simply unbelievable.

On April 1st it will be four (4) years since I was told there was evidence by a scan that my cancer had moved beyond my breast into my mediastinal (between the lungs) lymph nodes. A few weeks later I learned it was in both of my lungs as well.

Those words above are both frightening and freeing. Frightening because of the everyday fear they will disappear. Freeing because my perceived time-shackles have been loosened. I absolutely did not think I would see my only son turn 21 which he did on March 11th. Nor, did I think I would see my youngest daughter turn 14. Her birthday is April 6th; I am looking forward to celebrating that day with her.

Like I said, it is simply UNBELIEVABLE!

Saturday, February 25, 2017

Just Be Courteous

After 52 years of living, you might imagine that my life experiences should have hardened my emotions causing me to spend less time thinking about and letting the noticeable absence of simple courtesies in our society get to me. Sadly, it hasn’t.

Last week I received an email from a person who wanted to speak with me about my life with cancer. They said, “After reading your blog, I was hoping to set up a call with you to describe our series and mission and see if you are interested in participating.” I gladly agreed, and a time was set for our conversation.

Turning to the internet, I found she is who she said she was. This person works as a television segment producer for a popular morning program. In the email she said, “One of the segments is a profile of a woman with advanced breast cancer and what the journey is like.  We are hoping to shed light and bring more attention to advanced cancer patients and understand the support they need.”

The morning of the interview, as I prepared for the day, I thought about what I might say. I spent time writing my thoughts on paper. An hour before the interview, I sat down at my desk re-organizing my written thoughts and drinking water trying to lessen the hoarseness of my voice –allergens in the air and my acid-reflux raging against me were giving my one working vocal cord a hard time.   

The time for the call was near. I sat nervously waiting, reading over the pages of my notes. Here are a few of those thoughts:
  1. stop blaming people for their disease
  2. breast cancer is many diseases not one, each with different characteristics
  3. the longer it stays in the body the more complicated it becomes making it harder to treat
  4. people need to scrutinize studies that are published, and pay attention to the words used otherwise non-cancer people and new patients often are led to believe a cure is close when it is not —words like may, might, petri-dishes, mice studies, human studies, and variables need to be emphasized
  5. awareness campaigns need to better educate people about cancer—it is so much more complicated than simple cells growing out of control
  6. the financial struggles that come because of the disease cause ongoing emotional and physical stress--there is almost no help that I can find for those above a certain income level—hospitals and treatment facilities do offer some relief for monthly amounts due, but not always and not enough.
Two-thirty came. I sat at my desk. The minutes ticked away. The phone call never came.

I emailed the person the next day saying I hope she and her family are well, and asked if the absence of the phone call was due to the busyness of her job creating some unforeseen event. I added that if she found someone else to speak with then I understood. You get it –blah, blah, BLAH!

She emailed me later that evening and regurgitated my email back to me.Yep, her family is fine; yep, she is busy; and, yep, she found someone else.

Okay. Fine.

I was happy she and her family were well.

But . . .

Somewhere in that over 24-hour period before I sent the email, I am guessing our scheduled phone conversation must have crossed her mind. In an age where communication comes in so many forms and takes little time and money for messages to be sent, I find her actions baffling. Besides the absolute unprofessionalism there is an irony that slapped me across the face. This person wanted to find out how others might better understand the support that advanced cancer patients need. I wondered had she given any thought to the topic she wanted to highlight in the segment series. Something so easy to do and takes such little energy; that of respecting another person’s time. A simple courtesy that all people should show one another.

So now, I have one more item to add to my list of what can be done to “understand and support” the needs of an advanced cancer patient.

Never waste their time.

I don’t get it.

It is not hard . . .

Just be courteous.

Tuesday, February 21, 2017

Health Update

Yesterday was scan day. Around 2:00 my oncologist's PA walked in wearing a smile on her face which could only mean one thing: my scan results were spectacular! I am still celebrating today.

My platelet count was 88,000 adding to my joy.

Yep, a great day for me, and the shortest post I think I have ever written for you.


Sunday, February 5, 2017

The Importance of a Clean Home

Ah, a clean home . . . it feels so nice. The visual pleasure of looking at an environment that is orderly and as dirt free as possible does something to my brain. I feel more relaxed. More in control.

The fragrant smells that waft through my home whether from the Glade plug-in on the wall or from some cleaning product filling the air is quite pleasing to me. Take a trip down the laundry aisle of the grocery store and maybe you will see what I mean. Those scents on that aisle grab my attention sending me gracefully dancing down that aisle—mentally of course.

There is a long history of the cleanliness of a home being called “women’s work”. It is deeply embedded in many societies. This role--though, I am not a scholar on the subject--is tied to the fact that women are most often the caregivers of children. I am not opposed to women taking on this role in today’s society if they want to—obviously, since I chose to stay at home with my children; it is by far the best job I ever had, and I am immensely grateful that my husband brought home the necessary cash allowing me to do this work. But, when a woman works outside the home, viewpoints of who is responsible for the cleaning of the home need to change.

Through the years, I did my best to manage the daily operations of my home, but did not do it exceptionally well the more I was pulled away due to the activities of my children. There were also times I was paid for work outside my home but unfortunately there were consequences.

I cleaned a ballet school--my girls helped--and did basic maintenance for the building in trade so my children could attend classes. That same school paid me to make and alter costumes. I also received additional compensation to manage those costumes during several productions. Prior to my stage IV diagnosis, I juggled working several part-time jobs: one was in a daycare working in the classrooms when needed and helping with its afternoon operations; some days I worked in the office for the previously mentioned ballet school and after hours, three times a week, I cleaned each room of the daycare—these businesses were next to each other, thankfully; the most time-consuming job was my work as a merchandiser in several grocery stores because the paper work came home with me. All of this was done while still homeschooling my youngest and taking two of my older children to their daily academic classes away from home and then bringing them home later.

As determined to do-it-all as I was while working those jobs, after nine months of it I accepted the fact I had to drop one of them. Still, I continued to be away from home, a lot. Sure my home was dirty. Sure I was involved in dog rescue caring for several dogs including my own. And, sure, I had more to do than I ever could get done. But instead of someone offering to help or asking my husband to give me a helping hand, I was blind-sided with an attack on my mental state.

I discovered the sinister plot by a few of my family members during an interrogational conversation on the telephone one evening about how I was living and raising my youngest child. I knew nothing of anyone’s thoughts of me until that conversation. It was all quite bizarre. The next day my husband received a phone call. The person on the other end said it was imperative he come over. My husband left with no idea what was going on. When Greg returned home I discovered I apparently had . . . a hoarding disorder. My husband was told he needed to “fix me”. We completed the puzzle and realized my family members, who do not live in my home, had begun a covert operation against me. Instead of helping me, an intervention was in order.

It is true my house was dirty, cluttered with misplaced items, dishes in the sink with books and papers scattered on tables. It was also true my youngest –10 at the time--liked to sleep on the couch, and her bedroom was not painted in a favorable little-girl color because her bedroom had been a former home-office--this was apparently bad too. And, since our daughter kept getting strep throat, it must be from all those animals I had living with us. (Yeah, wow . . .) I was getting the sense that someone needed a hobby and had spent too much time watching episodes of cat-hording women with their 100 cats producing waste all over their living spaces. If this show has ever crossed your path then you know this show documents a family’s intervention in hopes the person, living quite differently than most of us, will return to the life that most people consider normal. To some people--not the people who lived with me--I had become one of those women.

On the surface it was laughable what I was hearing. But, the deeper issue was not. How could this be happening? I was a woman who got up in the morning, cared for my animals, secured care of my youngest child or took her with me, drove the other children to their classes, and spent the rest of the day spreading my time between all my jobs, getting home at night, finishing paperwork, cooking dinner, educating my child, and finally collapsing leaving dirty dishes in the sink, laundry unfolded in their baskets, waking up the next day to do it all over again or giving my best effort to try and catch up from being gone the day before.

Then a conversation occurred between me and another family member in a public place. Apparently, this small group of family members believed I needed to talk to someone. Maybe that someone could help me. (By someone this person meant a psychologist, or perhaps a psychiatrist.) This from someone who gave me a cartoon snipped from a daily paper years before saying “the cleaning can wait”.

It was official. I was under attack. All because of a dirty home.

That year we stayed home for Thanksgiving. By Christmas I received an apology from one individual, only because he didn’t want us to skip the family gathering at Christmastime. I accepted it because of my children, and darn it, I couldn’t not talk to them forever, they were family.

When my metastatic condition was made known, my clean house--or my not clean house--depending on your definition of clean—and my mental disorder were put away. I quit my jobs, not because of the family’s thoughts of me, but because of my disease. I had full support from my husband. He agreed I needed time to focus on getting my personal things in order.

Time went on, but I have never forgotten how hurt I was—still am. Last year, I received the most honest apology from one of those family members involved in my attack. She unfortunately had experienced with her own family the nightmare of someone blaming her for something untrue--unrelated to house cleaning, but something that made her see how unfair her family had been to me. Judgments made by spectators can in fact be wrong. I hate that it took something horrible to happen to her for her to see the horrible that had happened to me, but the apology and her acknowledgement that she was wrong was needed, by me.

So, today I still find my abdomen muscles tense when I think about that time in my life. My muscles are tensing now as I write. Each time I have a good scan, I have wondered if I should get a job just to help out with my medical bills even though that effort would hardly put a dent in them. I wonder too, if I went back to work now, would my living environment become chaotic again. And what will happen if my disease takes control? Will people consider my dirty house a risk to my child’s health because I am too sick to clean it? My environment in my home is the only thing I have any control of, at least for now. Do I continue my efforts to finish my list-of things-to-do-before-I-die while keeping my home in control? Or do I get a job?

People like me with metastatic cancer face many obstacles and employment is one of those. We are not always available 5 days a week from 9 to 5. Our life can change significantly quickly. Neuropathy can make standing for long hours difficult. Digestive issues can be embarrassing and can make us late to work. Other illnesses related to our cancer treatments, like my recurring urinary tract infections can cause missed work days. Any employer would have to be understanding. I realize these are excuses and could possibly sound whinny, but these are some of the reasons why getting a job is not an easy decision nor working in that job easily accomplished. I fear losing time spent with my youngest child. I fear, too, losing the one thing I can control in this life; a clean, organized home where I can hide from the world because cancer takes everything.

Get a job . . . I think that thought with every clean scan. I am struggling.

What would you do?

Tuesday, January 24, 2017

Clotting Challenges - Health Update

The night before last, I groomed my dog, Tucker. He is a poodle mix so it is necessary to groom and clip him especially when he turns into a puff ball of fur that can no longer see. As I brushed him, I saw a scratch on my arm. No big deal, just a little scratch, not sure how it happened. What was unusual about this little scratch was the bubble of blood it produced. I thought to myself, hummm, I wonder if that means my platelets are really low; little scratches usually clot quickly. I applied some pressure; the bleeding stopped. I found my dog inside that puff ball and didn’t give it another thought.

Yesterday morning I drove to my infusion appointment, went through the maneuvers of checking in, getting my port accessed, and then sitting while waiting to see the Physician’s Assistant I have been seeing a lot of these days. She came in, greeted me and said, “Well, you’re not going to be happy with your platelet count.”

She was right. When a normal number is between 150,000 to 450,000 platelets per microliter of blood then my current number of 67,000 is not a good level.

For a while, my platelets have been bouncing between 80,000 and 90,000. In November, they were 70,000. By early December, the number was 75,000. On January 3rd my blood work revealed a small increase to 80,000. These numbers can bounce around even if my blood counts were redone an hour later. Would it bounce up to 90,000? Probably not.

I have had platelet troubles before. In order to improve them, we tried increasing the time between treatments. It worked sometimes, but in the end dose reduction to 80% of full-dose of my current drug treatment--TDM-1-- was the most effective change. When my platelets started to fall again, it was decided that as long as my numbers didn’t drop below 50,000, I could receive treatment.

Yesterday's platelet count was above 50,000 which is within the treatment range, but since there is no protocol to follow for people like me--on this drug almost three years--it was decided in an effort to do no more harm than necessary, it would be better to wait another week before treating. While disappointing, I am okay with the decision. I have been feeling more tired than usual, so maybe one more week might help that too. Next week, I get to do this all over again hopefully leaving with infusion #61 overall and #44 for TDM-1 completed.

In February-- the 20th –scans will be done. Oh the anxiety . . . my nesting instinct has been in full swing, organizing this and moving that just in case my life changes dramatically. The thought of it leaves my stomach tight and internally I feel I might explode.

Until next time . . .

Thanks for checking on me.

Saturday, December 31, 2016

Goodbye My Jet

I hate to see 2016 go since it has been one of the best years I have had in a while. My clean scans throughout this year have easily made it wonderful. My travels to Georgia, Kentucky, Ohio, Washington DC, the NC mountains, and Louisiana have made this my most traveled year ever adding to its grandness.

The end of the year was only eight days away when a decision I hated to make, but knew was coming, put a smudge on the month of December. Over the past year my border collie’s health was in decline. For the last many months he was no longer able to go up and down the steps of our home forcing me to carry him in and out—no easy feat since I am 98 pounds and he 50. On December 19th, he no longer could move his back legs making caring for him much more difficult. On the 23rd, my husband and I hesitantly took him to the vet. It is not a fun place feeling like your decision makes you an executioner.

He did not struggle as we waited in the room for the doctor. When the vet entered, my dog comfortably lay beside my husband. I chose to stand. She mentioned his breathing indicated he didn’t have long. She tried to comfort us with, “You are doing the right thing.” It wasn’t necessary. I knew we were.

The days leading up to his euthanization I rationalized the decision saying to myself: he is 14 years and 4 months old; he is not going to get better; he is in pain. My feelings of selfishness remain, though, as I knew my life would be easier as his struggles to get up during the night would no longer awaken me.

His euthanization also begged me to consider how people are often kept alive when the doctors and the patient's loved ones know the person will not recover. There is always that hope, though, that somehow the impossible might occur. I don’t believe in killing human life under any circumstances, but my disease and the extreme measures of which people attempt to keep the inevitable at bay make me question that belief.

My dog, Jet, did almost everything I ever asked of him except “come” on command when a car pulled into our driveway. Chasing a Frisbee, a ball, or even a cat or chicken if given the chance, were his favorite activities. He had some insecurity issues we never completely overcame, try though we did. His ears played tricks on me as they flopped and stood-up finally making their final display of standing erect permanently at around age 4. He was a rescue dog born to a border collie female who gave birth at a shelter where she was dropped off. I took him home at 8 weeks when he weighed 8 pounds. From the day I brought him home I knew he would become my competition agility dog. We trained for 5 years. Every competition I entered him--except one of which I disqualified us--he won 1st place. Those years were such fun.

Goodbye 2016 and goodbye my Jet.

Tire Jump

Weave Poles
See Casper "the friendly ghost" on his side? Casper might have been a good name, but Jet was what I wanted.

Wednesday, December 14, 2016

Death Be Not Proud, a book and a look at alternative medicine

My copy--published 1969
On a recent morning I awoke thinking about a story I read in the 6th grade. The book was written by a 1940’s journalist named John Gunther. He named his book, Death Be Not Proud, after a poem by John Donne. (You can find it at the end of this post.)

Wondering why this book has stuck with me for all these years led me to some questions: What word choices did the author use? How did he transition from one sentence into the next? Was it memorable for me because the main character was only 17 years old when he died of cancer? Maybe, it left an impact on me because my mother’s illness from ovarian cancer was still fresh in my mind.

Even as the pages of my edition (1969) continue separating from its binding and are now held together by a rubber band, I cannot think of ever throwing it away. There is such emotion in the pages of that book even though the writer tried not to let his be known. Grabbing it from the shelf, I revisited the story once more.

Death Be Not Proud--a memoir is about John and Frances Gunther’s son, Johnny, who has a glioblastoma mutiforme brain tumor. What is glio multiforme?  This type of brain tumor is as deadly now as it was then. The story tells the events from his treatments to his death spanning over 15 months. The first treatments involved surgery, mustard--liquid NH3--administered intravenously (a chemical compound found in the mustard gas used in World War 1--the first chemotherapy), and x-rays targeted at the tumor. All the doctors they had seen, some thirty-five or so, believed not much could be done, their child was dying.

While I read the first chapter and into the next, my initial plan to study why I considered this a good book changed. The change happened with one word, Gerson. No, this can’t be, I thought. I kept reading. My eyebrows came together enhancing the deep wrinkle between them. What, is going on? This book is about living until you no longer can, but it is also about the use of an alternative treatment called Gerson Therapy. 

In the summer of 1946, John conversed with a gentleman about an unorthodox doctor practicing in New York, a Dr. Gerson. What drew John and Frances to him was his experience with brain tumors. They discussed the idea of contacting Dr. Gerson with Johnny’s main doctor. He opposed it but soon softened as they all knew Johnny’s condition was in decline. Most likely he would not live much longer. With nothing to lose they set up an appointment. For a large part of the remaining time Johnny had left, he was a patient of Doctor Max Gerson.  

John Gunther writes in Death Be Not Proud that Max Gerson never stated that his diet would cure someone of cancer, but his patients hoped it would and patients of the present day that follow the Gerson Protocol share that same hope.

The Gerson Institute’s website gives a brief history of its founder, Max Gerson. He was medically trained in Germany. After finding success in treating leukemia and tuberculosis of the skin by changing the diet of his patients he expanded the idea and brought it with him when he emigrated from Germany to the US. He made other claims of curing type II diabetes with his diet and eventually other diseases were brought into the mix including cancer. After his death in 1959, (he had lost his medical license two years prior) his daughter, Charlotte, took over eventually running the Gerson Clinic in Mexico. It continues to operate today. 

If you happen to be someone who has been in the cancer world for a little while most certainly you are aware of the Gerson diet. If you have not been introduced then let me provide you some information. The diet that Johnny followed contained no fats, or salts, only vegetables. Today, the diet involves lots of juicing: carrots, a concoction of green plants, apples, oranges or grapefruit. The foods eaten are plant-based only. Supplements are an integral part of the program.    

Early in the book, there is a brief mention of enemas as part of Johnny’s treatment. This is the most troubling part for me of Gerson therapy. The book did not describe the use of coffee in these enemas although I am guessing, like today, it is the main ingredient. The brand used is of course completely different from the regular coffee sold in grocery stores. Wonder if the feces used to make a very expensive specialty coffee would be accepted by the coffee enema experts. (Kopi luwak (Indonesian pronunciation: [ˈkopi ˈlu.aʔ]), or civet coffee, refers to the coffee that includes part-digested coffee cherries eaten and defecated by the Asian palm civet (Paradoxurus hermaphroditus). Reference: en.wikipedia.org/wiki/Kopi_Luwak]) The answer most likely is no.

The reason for the enemas stems from the belief that the liver and kidneys work inefficiently in removing toxins from the body and need some help from some good ole ground coffee beans. Come on now! Don’t people ever wonder how an enema is actually going to cleanse the liver? This is where alternative practitioners like to throw in some science that seems plausible but is not. Brace yourself because what I think is crazy is about to begin.

The coffee is held in the rectum for several minutes. (Takes practice, so I read.) While held, the important chemicals from the coffee seep through the membranes of the colon and enter a portal vein that enters the liver giving aid where the digestive system needs it allowing for this cleansing to take place. I hope all of you reading are thinking what I was thinking the first time I read this explanation: What kind of lunacy is that! Today, it is well known that too many enemas can cause a malfunctioning of the digestive tract. Cancer patients have enough trouble with their digestive system so please, let’s leave that part of our anatomy alone. And, do not try this at home or at the Gerson Clinic.

John Gunther believed that Gerson thought cancer to be misplaced cells that happened as an embryo develops. These misplaced cells might be destined to become a liver cell but are found in a different organ instead. Some environmental trigger inside or outside the body causes the cell to begin growing and from there cancer develops. Since the cell is in an environment that it is not supposed to be, it begins to destroy or eat-up all surrounding tissue. This idea I admit would seem plausible in a time when knowledge of cellular functions related to cancer was mostly unknown. Something like diet seems harmless and maybe believing there is truth that toxins need cleaning from our digestive tract is forgivable of someone who isn’t aware that our kidneys and liver are fine detox organs that don’t need help unless you are terribly ill; by then it is too late. That is why, before a patient does anything, they need to speak to their doctor. Add desperation to the equation and it becomes clear why people try this unconventional approach to treatment. Today, thankfully, science has revealed so much about cancer and how it works.  Alternative medicine peddlers love an uneducated or unquestioning cancer patient. I get it. When all is lost and only hope remains, people want to follow hope and Gerson was the only one offering it even if the hope had no basis in science. Here at The Cancer Classroom, if I help anyone with anything, I hope that it is for patients to always ask questions.

Alternative treatments do have stories where the patient improves and thus is the case of Johnny. For a measured amount of time during his 15 month ordeal after diagnosis, he experienced some improvement with his motor skills and possible shrinkage of the brain tumor while on the therapy. Some of Johnny’s conventional doctors believed it was the latent result of the mustard, surgery and the x-rays. Because of Johnny’s improvement, Gerson proclaimed “Your son is saved.” The “bump” on Johnny’s head still remained but Gerson worked to convince everyone that “the tumor was dead, killed by diet.”

Two neurologists told Johnny’s parents that the diet had nothing to do with any reprieve that he was experiencing while on Gerson’s diet plan. Still the family remained steadfast in their desire for Johnny to continue the treatment. When things no longer were improving, his other doctors thought he should try mustard again and that Johnny would benefit from another surgery, but Gerson’s word was powerful when he said the anesthesia would kill him because it conflicted with the diet. There was no mention of how this was known; I am guessing anecdotal evidence.

My shock at finding out Johnny had been on the Gerson Protocol did not change the way I felt about the book. I have a different view of it but it is still what I consider a "good" book. The final pages, “A word from Frances” written by Johnny’s mother touched me emotionally. Her writing for me may have been why my memory of this book has lived with me all these years. Her words flowed into me and I drank it all in, never to be separated. She writes of regret in sending her son to boarding school at a young age. Seems natural when reflecting on life to wonder if relationships or events would have turned out better if things had been done differently.

She wanted to create a human being that would make the world a better place and she did as seen in the letters from people who wrote about her son. I have wanted to do the same with my own children. Parents have a huge responsibility to teach their children to treat others with kindness. We must each play our part to bring civility and goodness to our world.  Then maybe there would be less chaos and violence. Our children are a sign of those efforts. There needs to be more work in this area.

I love her words left on the end pages of this book and the ones scattered throughout. “Life is a myriad series of mutations, chemical, physical, spiritual . . . that law of life which out of infinite mutation had produced Johnny, that law still mutating, destroyed him. . . . Loving life, everywhere and always” are just a few.  

I started on a quest to find out what made this book memorable. I accomplished that goal as it is clearly a combination of so many things—the words, the emotions, the subject matter. This book resonates beyond its pages since all of us will face death. Beyond those elements, what is missing from several lesson plans that I found on-line neglect to talk about the subplot: the use of unconventional verses conventional treatments. Each of us will at some point face illness and need to be aware that pseudoscience exists and educating yourself about your illness and the treatment practices that work or don’t work is so important.

Because I think 6th grade is too young to fully appreciate this book, I did a little digging. I found out that in 1975--I read it in 1976--the book was turned into a movie starring a popular teen star at the time, Robby Benson. I never saw the movie though. Popular culture does influence what is taught in classrooms and this small piece of my life proves that. A lot of books I think are read too early in the education of a student. This is one of those books. I am going to guess that this is yet another case of too many books, too little time.

As promised, here is the poem from which the story of Johnny Gunther was named.

Death, be not proud, though some have called thee
Mighty and dreadful, for thou art not so;
For those whom thou think’st thou dost overthrow
Die not, poor Death; not yet canst thou kill me.
From Rest and Sleep, which but they picture be,
Mush pleasure, then from thee much more must flow;
And soonest our best men with thee do go—
Rest of their bones and souls’ delivery!
Thou’rt slave to fate, chance, kings, and desperate men,
And dost with poison, war, and sickness dwell;
And poppy or charms can make us sleep as well
And better than thy stroke. Why swell’st thou then?
    One short sleep past, we wake eternally,
    And Death shall be no more: Death, thou shalt die!