Thursday, July 20, 2017

Genetics--BRCA 1 and 2 plus PALB2

Please consider: If you or your child has not been diagnosed with cancer and feel you are at risk for any cancers because of family history, DO purchase life insurance before pursuing care for a potential diagnosis and before any genetic testing that could lead to a positive result if it would be helpful to your family. Positive results may inhibit your ability to get life insurance.

I met with a genetic counselor on 7-17-17. Our conversation was informative causing me to have one of those “what if” moments. When I was in college in the 80’s, I entertained the idea of pursuing genetic counseling as a career, but in the end did not. To this day, I continue to find genetics fascinating. This post is my attempt to simplify a very complicated genetic condition found in some breast cancers. If you have any questions about the BRCA 1 and 2 genes, please speak to a geneticist for clarification.



All cancers are genetic, but not all cancers are inherited from a person’s parents. Hereditary cancers make up around 10% of all breast cancers. The other 90%, as far as scientists know presently, are random mutations or possibly caused by certain environmental exposures.

In each of us, our cells hold the code that make us who we are. This code is called our DNA. In it are 46 chromosomes—23 from our mother, 23 from our father. Within each chromosome are different numbers of genes. Chromosome #1, for example, is large and has approximately 2,000 genes. Each gene holds instructions to create proteins that tell cells what to do.

In breast cancer, two inheritable genes were discovered in the 1990’s—BRCA 1 & 2; BRCA stands for BReast CAncer. More recently, geneticists found another gene called PALB2—Partner And Localizer Breast cancer 2. It partners with the BRCA2 genes. A person who has a mutation on any of these genes—inherited or not—has a higher risk of having breast cancer.

BRCA 1 and 2 are tumor suppressor genes and their particular proteins handle the DNA repair which work to stop cells from becoming cancerous. These two important genes when working properly monitor DNA mutations throughout the various phases of a cell’s life.

The PALB2 gene affects how the BRCA2 gene works. Sometimes, the BRCA2 gene will have NO deletions or alterations, but there is an alteration or deletion of the PALB2. This can shut down the BRCA2 gene’s efforts in preventing a cancerous cell from developing. Once that cell becomes cancerous the damaged PALB2 gene allows for the continued replication of the mutation because it is no longer working with the BRCA2 gene. That is why drugs for this problem are called inhibitors; in this case PARP inhibitors. Those drugs stop the PALB2’s influence on the undamaged BRCA2 gene so it can once again do its job of stopping cancer. 

During my meeting with the genetic counselor, she drew a picture showing how the BRCA 1 and 2 genes work in breast cancer.

Here it is:

This is my understanding of what she explained to me concerning these genes:

We inherit two BRCA1 genes and two BRCA2 genes; one of each from our parents. (The picture shows 2 copies of either the BRCA 1 or 2, and this simple drawing demonstrates two situations that can occur. The small x’s represent alterations or deletions of these genes.)

When we inherit two perfect copies of the BRCA 1 and 2 genes—as the upper part of the drawing depicts—any future breast cancer would not be caused because of an inherited altered gene.

Though a person did not inherit a damaged gene, sometimes a mutation can occur in one of the paired genes in our 30s or 40s. As long as its partner gene is still working, no breast cancer will arise from this mutation. But if the partner to the pair becomes defective during a person’s lifetime, breast cancer can appear in a person around their 70’s or 80’s.

If we inherit one defective BRCA 1 or 2 gene—shown at the bottom of the picture—the other paired gene could become mutated in our youth, causing breast cancer to arise in a person’s 30’s or 40’s. The risk of breast cancer is increased but does not mean it will occur.

If we inherit two altered or defective genes in either the BRCA 1 or 2 pairings, there is an even greater chance that breast cancer will arise.

In 2005, I had testing for the BRCA 1 & 2. My result was negative. Today that testing is considered incomplete.

Monday of this week, the genetic counselor and I reviewed my, and my family’s, medical history to see if further testing would offer helpful health information for me and my children—I have three daughters and one son—sons are less likely to have the disease than daughters, but their risk is not 0%. For your information, here are the family relations and my history that made me a candidate.


In women, breast cancer has been linked to certain ovarian, melanomas, and pancreatic cancer with ovarian cancer being the most often diagnosed disease. For men, prostate cancer becomes a possibility.      

Since my mother had ovarian cancer at age 35, and I was diagnosed with breast cancer at age 41, our young ages turned on alarm bells to pursue further testing. My mother’s ovarian cancer could be related to her mother’s uterine cancer. However, my cancer is most likely not linked to my grandmother’s uterine cancer but could be linked to my mother’s ovarian cancer. So, there are two reasons to proceed with further testing on me especially now that testing can find that third defective gene.

Confused? I hope not. But, if you are keep in mind, genetics is complicated.

Inheritable genes can come down on the father’s side as well. In my case the diseases that people have had on that side of my family do not indicate any possible inherited gene related to my breast cancer. For me my mother’s side holds the only possible connection to an inherited condition.

Since every cell has the same DNA, testing for a genetic link to my cancer can be done by sequencing the genes in my blood cells. Before my infusion on Monday—infusion #54 of Kadcyla (TDM-1)—two vials of blood were filled to be sent to a lab for testing. 

In my case the geneticists will be looking at 19 genes that could have played a role in my breast cancer. The only one that could be targeted for treatment currently is the PALB2 where a PARP inhibitor could possibly be used in my treatment plan.

Because the likely hood of inheriting a defective BRCA gene is low, most results from this type of testing are negative. Positive results are small and results of unknown variants are small as well. An unknown variant result means no one knows if that information has any significance to a person’s diagnosis of cancer. It could be important in the future, especially to offspring, but for now it is filed away to be brought forth if it shows up again in another person’s DNA sequencing.

The geneticists that accompanied the counselor explained to me the company Invitae that will be handling my genetic test believes in making data accessible to all researchers. This allows all research facilities to work together to determine if any variants found might in the future be connected to breast cancer. The geneticist made a great case for why data sharing is important among scientists as opposed to companies keeping data in silos making any data inaccessible to other scientists as well as to patients. Hiding the information slows down progress and hurts current and future patients.

I will have the results in three to four weeks and will provide an update then.

I must say, this waiting is far easier than the waiting for the results of a scan.

Sources:   

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063418/
http://www.breastcancer.org/research-news/abnormal-palb2-gene-increases-risk
http://www.cancer.net/navigating-cancer-care/cancer-basics/genetics/genetics-cancer
http://www.medicaldaily.com/first-brca-targeted-drug-shows-early-promise-biomarin-jumping-phase-iii-trials-246438 
http://cisncancer.org/research/what_we_know/advances/oncogenes.html
https://en.wikipedia.org/wiki/BRCA1  

Tuesday, June 27, 2017

Unbelievably Beautiful!

A sleepless night of worry that my luck had come to an end turned out to be just another sleepless night. My scans were UNBELIEVABLY BEAUTIFUL!

Today, I continue to question if what I was told yesterday is my reality.

But, it is!

Happy! Happy! Happy!

I can't explain it any other way.

Saturday, June 17, 2017

I Want To Be Heard

We were riding the train in the Cincinnati airport after a long weekend of family tied together by people from long ago. My stop was terminal A, hers terminal B.

As my stop approached, the two of us standing beside each other holding onto individual poles preventing us from falling, my aunt looked at me and said, “I couldn’t read your blog.”

Before that moment, I assumed she had forgotten I had a blog. On our second full day together I learned that she did not understand stage IV breast cancer is terminal asking me, “So what is your diagnosis?” So, bringing up my blog at the very end of our time together did not exist on the list of things I expected her to say.

I quickly jumped into protection mode not wanting to hear any negatives about my writing. “It’s okay,” I said. “I was really depressed in the beginning. It isn’t so dark now.”

Because I was able to get to know her better over those few days, I know now she was not bringing to light any negatives about my blog. She brought it up to tell me she now understands why I have a blog.

The train stopped. Before I departed my aunt said, “I think you want to be heard.”

Nodding my head I said, “Yes, I think I do.”

We hugged goodbye. I departed the train giving more thought to what she had said, the doors closing behind me.

She is right. I do want to be heard. I want to be heard, but I want the people who are part of my life to want to hear me. I don’t want to force it upon them in conversation. I want them to take time out of their day to read what I write because they care about me even if it makes them uncomfortable.

I have long suspected that the very people I wanted to read my blog did not. Those family members were the people I targeted when I first began to write--along with a few friends. My expectations of what I think family should or should do or be to one another are often much higher than what reality actually gives me. This is proof of that.

Maybe I am asking too much. My want for people to read my blog so they understand my emotions connected to my death is perhaps more than they are willing or capable of doing. Breeching the subject can be highly emotional. It could cause me pain and pain for them as well. The conversation of death is often avoided because dipping your toes in it may cause a dam to break. Staying clear keeps everyone from drowning. There is a great need to protect against that. I get it.

On occasion I have slipped into a conversation with a family member about my disappointment that no one except my two oldest daughters read my blog. That little push has caused them to take a moment to let this part of my life into theirs. I might hear something small about it the next time I speak to them but after that, nothing.

I feel selfish feeling this way. There is nothing so special about my thoughts that must be read. But I do want to feel as if my thoughts and words matter to them. Then, maybe, once in a while, when they are telling me about their lives they might acknowledge that my world is different. One where I have to consider I might not be here next year while they get the luxury of planning their future years not aware as I am of a timeline with an endpoint in the not so distant future—statistically speaking. The two perspectives are vastly different.  

So yes, dammit, I do; I do want to be heard. I want people to know what I am going through. That I am scared, hurt, and full of pain, rage and self-pity for a disease I cannot control. And I am jealous, yes jealous, that the people in my life can pursue things that I will never be able to.

Yes. I want to be heard. As another scan approaches--June 26th-- my fears are enhanced. That day I must rise much too early in the morning and journey to a machine revealing my future is the day I need to scream into the universe because I don’t know what else to do. This blog lets me do that. I am screaming in this post. My life and my death are racing each other.

I need to give away my grief. Put it out there so I don’t feel alone trying to live as I do constantly having my death hovering over me. It never leaves my thoughts, how can it?

I carry cancer with me, everywhere. I carry the thought of dying, everywhere. When I am tired, my defenses are weakened and can easily reveal on my face my feelings if prompted by the right stimuli. When everyone around me is struggling to be heard about the things that are bothering them, I am struggling too to keep myself from letting loose and scattering all of me in front of them. I am losing so much; I am losing my life. I am not ready to die. There is so much I want to do.

My words strung together from thoughts in my head matter to me. Maybe I shouldn’t care so much that my loved ones hear them. But I do. They are my words expressing how I feel. Sometimes I just need validation they care. 

Somehow, I thought my loved ones would want to hear my pain and offer me soft words when I needed it. I was wrong about that.

We are all islands living among each other and not really stopping to listen to what the other needs to say. I too am guilty of forgetting to listen, but am trying to correct this mistake whenever I can. I think we all want to be heard and want our feelings to be important. 

So it is to my two now grown daughters, to a few friends who have let me know they read my blog, to those people I have never and will never meet, and maybe one day to all of my family members that I want to say thank you for giving me some of your time. Thank you for reading my blog and for listening. I do need to be heard by someone, anyone.

You are it.

Friday, May 26, 2017

Genetic Testing and Lympedema

The American Society of Breast Surgeons held their annual meeting in Las Vegas, Nevada on April 26-30th. See here  There were two updates reported that directly affect me: Genetic Testing and Lymphedema. 

Genetic Testing
When I was diagnosed with stage 0 disease (DCIS) in 2005, I was offered genetic testing due to my family history. My mother was diagnosed with ovarian cancer when she was 35 years old. She never saw the return of that cancer, thankfully. Her mother survived uterine cancer.

My husband and I discussed the testing and what it would mean for our children. The possible genetic link and their futures in terms of cancer were relevant. We felt we needed to know. If I possessed an inherited gene, my children could be tested, and if it were found they too carried the same gene, close monitoring of their health could begin.

Luckily, the testing came back negative. At the time I thought another benefit of the testing might result in a family member stopping their use of genetics as a weapon against me for potentially causing my children harm. I felt enough guilt. He didn’t stop; sometimes people can hurt one another because they don’t think. Nevertheless, I felt better.

Months ago my Physician’s Assistant suggested I consider genetic testing again as technology has improved and there are more genetic mutations to look for now. In 2005, the test I underwent only looked at BRCA 1 and 2.

After reading the new guidelines from the meeting of the American Society of Breast Surgeons, I was surprised concerning all the possible mutations now found through testing. I felt the pain of fear stab me at the same time because of what I might find out through more testing. You can find more information here . The mutations are: BRCA 1 & 2, TP53 (Li-Fraumeni syndrome), PALB2, CDH1, PTEN (Cowden syndrome), CHEK2, ATM, STK11, NF1, NBN. The guidelines indicate what measures should be taken to monitor and possibly prevent breast cancer driven by these mutations. Mammograms and breast MRIs help to monitor for disease. Mastectomies, chemotherapy, and hysterectomies try to prevent it or control it once it occurs. As I read the report, I learned about other types of family cancers that put people in the high risk category for breast cancer. These cancers can have these particular mutations and include: pancreatic, colorectal, ovarian, prostate, thyroid, kidney, endometrial, gastric, male breast cancer, and an osteosarcoma brain tumor.      

In July, I will see a genetic counselor to further evaluate my case. I will write about the results of that meeting and/or testing when or if it occurs. 

Note: Errors can occur in testing. 

Lymphedema
My first surgery for breast cancer in 2005 involved a bi-lateral mastectomy and the removal of two right-sided axillary lymph nodes. The nodes were negative. Round two, in 2009, a tumor that appeared near the center of my chest was removed in my breast surgeon’s office. My surgeon wanted to make sure there was no more cancerous tissue where the tumor had grown so she scheduled surgery, removed more tissue to be viewed under a microscope and also removed another lymph node. It too was negative.

Before surgery we discussed the possibility of lymphedema. She informed me that if the lymph node she was planning to remove held cancerous cells she would have to remove more lymph nodes. I was quite distressed. I had seen the pictures of severe cases of lymphedema. Avoiding it was high on my priority list. In the end, I have had three lymph nodes removed.

Not long after my surgery as I was going through radiation and chemotherapy, you guessed it, I developed lymphedema. At first it was mostly in my fingers and the top of my hand. I could push my finger tip into the top of my hand and pull it away and the finger impression would remain. A clear indication that indeed I had what I had feared. It eventually moved into my lower arm as well.


July 2010
In this picture, you can see my lymphedema is a mild case, but from my point of view, it was huge; I cried many tears over it. I hated my hand and arm. It was a constant reminder of what was happening to me. There were moments I wanted to cut it off thinking I would be happier with myself if my arm was gone. Strenuous activity like yard work made it swell even more. I spent hundreds of dollars—my insurance did not cover any of the compression supplies—on wraps, sleeves, and gloves trying to find what worked best for me. I went to a physical therapist to learn how to wrap my arm and hand correctly and to perform lymphatic drainage. Every night I elevated my arm and would try to stimulate the tissues and the lymphatic channels just under my skin with soft circular motions performed by my other hand. I started with my fingers and worked up to the top of my arm and chest hoping to send the swelling away. I couldn't tell if any of it was helping. I began to think that all of the help I sought was useless. This was something I had to figure out.

My plumbing issue of not having three lymph nodes where my lymph fluid entered and exited my arm gave me little hope of ever having a normal appearance again. After finally figuring out how to manage the swelling in my fingers and the top of my hand by wearing a glove purchased here in which I inserted padding for added compression, somehow after the onslaught of Taxotere and the year of Herceptin, I began to see veins in the top of my hand again. If I held my fingers together, light would shine between them. Could it be true? Was my lymphedema getting better?

It was.

Round number three came along and again I was treated with Taxotere, Herceptin and a new drug, Perjeta. My lymphedema worsened. Again I donned a compression glove and sometimes a sleeve. A year later my treatment switched to Kadcyla (TDM-1) and my lymphedema improved. My right hand will never be as small as my left hand, but as long as I can see the veins in the top of my hand happiness fills me. 

An article here reported on an interview with an attendee of the American Breast Surgeons meeting. Sarah McLaughlin, MD, a surgeon at the Mayo Clinic in Jacksonville, Florida said Taxane-based chemotherapies (Taxotere, Taxol) may contribute to lymphedema—of course axillary lymph node removal and radiation are still part of the equation. It appears that I was on to something in thinking maybe my chemotherapy treatment was worsening my condition.

Today, my hand and arm look like this.
 

May 2017


My fingers are still larger than normal, and my right hand is bigger than the left, but I don’t cry about it anymore nor do I wear a glove or sleeve.

If you have lymphedema, chemotherapy could be—in part—responsible. The best news is, it might get better after treatment with a Taxane is over, at least a little.


(I just discovered this company, LympheDIVAS, now have compression gloves instead of only gauntlets like they used to carry and can be purchased through Bright Life Direct! I have not tried them, but if my lymphedema worsens I might get a little crazy and try something fun. Nothing cheap about these, but they have wonderful patterns and colors. Check it out here . I found Bright Life Direct's plain tan gloves to work best for me.

Wednesday, May 17, 2017

In Defense of Sympathy

gograph.com

When I was in high school, a friend telephoned to tell me a boy we knew had been killed in a car accident. He was 17. I remember putting down the receiver unsure of how to feel. It seemed surreal.  I had never experienced the death of someone I had known so well. I remember feeling sadness for his sister, his parents and for him, but otherwise I felt lost, almost empty.

For a long time I have been steadfast in my belief that empathy meant one person had a similar experience with another allowing each to better understand what the other was going through, emotionally. Today there is no doubt I would know exactly how to feel if that same friend called to tell me our friend had died. I am aware of the pain that comes from my knowledge of it. That, to me, is empathy. Sympathy, on the other hand, meant that a person had concern for, cared about, and had emotions about what another was going through even though the person feeling sympathetic had not have experienced a similar event.

Over the last few years when I hear or read of someone using the word empathy instead of what I think is the more appropriate word, sympathy, I would say to myself, “Why isn’t the word sympathy good enough?”  So, I decided to do some research. What I discovered about these two words, especially empathy, was surprising.

The word empathy is relatively new to the English language. It was introduced in 1909 by the British psychologist Edward Bradford Titchener who translated the German word Einfühlung into our English word empathy. The word at its inception gave people a way to describe the experience felt while viewing visual arts; it described a kind of tapping into the emotional aspect of that viewing. From there its meaning continued to take on a larger role in explaining people’s emotional lives and connections we have to each other.

In my research, the surprise I encountered was there is not a wholly agreed upon definition of empathy. It varies from the meaning of sympathy being flip-flopped with the meaning of empathy to using one’s imagination and everything in between. After much reading I must confess that my definition may be outdated. Even though my meaning of empathy needs some tweaking in order to be in sync with the zeitgeist of our times where empathy involves using the imagination, I still believe my definition is the better one because merely imagining yourself viewing an experience from another’s viewpoint has its limits; those limits are defined by the experiences we have had. I also believe sympathy has a role to play as well, a larger one than it now plays.

Though I do agree that the definition for empathy of imagining oneself in someone's shoes is not a completely wrong idea, the 18th century philosopher and political writer Adam Smith’s words in his work The Theory of Moral Sentiments (1759), here, caused me to rethink the contemporary meaning of empathy. Though he wasn’t talking about the word “empathy” –because it wasn’t yet used—he did describe humans projecting “our feeling into other forms in order to experience ourselves.” He wasn’t talking about seeing an experience from another person's point of view either. Instead he was explaining how we learn about ourselves through someone's experiences. That sparked a flicker inside my mind about empathy. I decided to take his idea and change it to offer what I think is a better definition for empathy. (Hey, with all the different definitions floating around I decided I can come up with one of my own.) Here is what I think: when empathizing, people are projecting their own emotions onto a person therefore they are not seeing it from the other person’s point of view but from their own. It is, at least to me, impossible to understand completely what another person is feeling. Humans do in fact project emotions onto lots of things, not just people. Take a look at advertisements about abused animals, or the fact that some of us hate to kill bugs as we watch them swirl around in the toilet after flushing. Others feel sadness if a plant dies especially when weeding out the little seedlings to make room for a healthier plant. Children worry about stuffed animals being left alone probably because they don’t like to be alone themselves.  We can’t feel what those life forms or objects feel--yes I know objects don't feel--but we do project what we might feel if we were in their position. That I believe is a much better definition for today’s use of the word “empathy”.

Over time, empathy has become the favored term over sympathy. Sympathy was used to describe our moral compass; if a person thought a behavior of another was bad then it was considered morally wrong. Empathy explained the emotions felt by those same behaviors. Eventually more people than not believed this word had the meaning I am most familiar with, one of knowing what an experience feels like because of having had a similar experience. Then came the push to persuade people that the word is about imagining being in the skin of someone else and seeing it from their point of view rather than from your own.

People advocating for social change began using this new imaginative idea extending from empathy's new definition. They were  hoping to improve the lives of those in poverty, improve working conditions, and help those who were ill or perhaps ostracized from the larger social networks. By talking about empathy, attempts were made to open people’s eyes to the fact that though that person doesn’t talk like you, look like you, or act like you, they are still a person with feelings and desires just like you. The idea is if people can create more of a “shared” connection to others a change in their behaviors would cause them to take action to better those people’s lives.

Our educational institutions took up the challenge of changing behaviors to better our world through empathy as well. Reading novels is supposed to create a connection with the characters and young readers. It does show readers that people have endured great sadness during wars, plagues or of governments mistreating their people. It does allow them to see a place in the world that might be completely different than the one they reside. But, it is clear to me that empathy is a process. To truly understand another person's hardship or even joy, you must live it yourself or at least experience something similar. I can tell you someone is probably scared traveling across a border to get into America illegally, but I can only guess what fear they are feeling having not experienced anything similar in my life. Seeing it from their point of view then is impossible. When I was a stage I breast cancer patient, I could imagine how I would feel if I became stage IV, but none of that prepared me for when I did become stage IV. It was much harder than what I thought it might be. I had projected my feelings onto each person who seemed worse off than I while sitting in the waiting room eventually to be seen by my oncologist. I still had hope at that time so my inexperience clouded my thoughts of their reality.

Currently my daughter and I are reading the Red Umbrella by Christina Diaz Gonzalez which is about two children whose parents send them to America to escape Cuba at the beginning of Fidel Castro’s regime in 1961. As I was reading aloud one afternoon, she saw me become emotional when the parents told their children they must go to another country for a while, alone. While I was tearing up and my words were breaking, she looked at me. I could tell she could not feel the same emotion I was feeling for these characters. She could not feel the pain of the parents having to send their children away nor feel how afraid those children felt being sent away. How could she? She has never experienced anything remotely close to what these people were experiencing. Though I cannot possibly get into the skin of those parents in the story, I do have children and have been afraid of losing them in a crowd or in some horrible accident. Was I feeling empathy or maybe a mix of sympathy and empathy for the characters? Was my daughter feeling sympathy with no life experience to feel anything else? And, does it matter what feelings we were having as long as both of us knew that people should be treated respectfully; that we should do what we are able in order to help people when we can. Not just on the big issues such as refugees but on the day to day contact humans have with one another.

Unfortunately, I think an unintended consequence has occurred due to the current political climate in regards to empathy. It may in fact be pitting people against each other. Choosing sides and wanting to produce change through anger seems wrong. I agree with Paul Bloom here  and Jonas Goldberg here that we can get so caught up in the empathy for one person that we can forget to be empathetic toward another. Think about this for a moment: if insurance pays for a treatment for one person, it may mean another receives no treatment at all because money is finite. If I say all refugees should not have an open door to come into America then I am labeled as evil instead of seen as caring about American citizens. It doesn’t mean I don’t care about refugees, it just means I am ALSO concerned for a different group of people, the group of people in my country. If we include young women with stage IV in a particular group because their needs are different than someone who is 50 or older than we are placing more importance on those particular individuals. When people take or give something for themselves or others, someone else loses that something. I think many people forget that. Our lives each have a price tag. If we insist that money be spent on one individual or one particular group of people then someone will suffer. I don’t like it, but it is reality. The choosing of who gets what is so difficult.

Sympathy may be the only thing we ALL can feel. Why can’t that be enough? Does it make us feel better about ourselves if we pretend to know how another feels in any given experience? Maybe it does; maybe it doesn’t; does it even matter?  Sympathy doesn’t mean we have no feelings about the person or their situation. It doesn’t mean we don’t want to help. Sympathy may be all that is needed to facilitate change. We can make change happen because we know what it is to simply . . . feel.




For some not so light reading, these websites will provide wonderful information to ponder.     

http://www.branchcollective.org/?ps_articles=rae-greiner-1909-the-introduction-of-the-word-empathy-into-english
https://www.psychologytoday.com/blog/hide-and-seek/201505/empathy-vs-sympathy
https://www.theatlantic.com/health/archive/2015/10/a-short-history-of-empathy/409912/
https://www.opendemocracy.net/transformation/roman-krznaric/welcome-to-empathy-wars


Thursday, April 27, 2017

Cancer It's Me -- a poem

Before I get to my poem, here are a few things that have been happening to me recently.

If you glance to the right of this page you will see my recent award. Posts for me don't always flow easily from my brain to my fingertips so to be noticed for my blog is quite uplifting. I don't just tap the keys of my computer and viola! a post appears. No, sometimes it takes days. Thank you, Healthline!

This month has suddenly turned into a busy month. My daughter who resides in Cleveland, Ohio has completed her contracted work with Cleveland Play House. Two weeks ago, she called to tell me she had been offered a job in central New York. Again she will be working for a theater company, but this time she is moving into a position with more responsibilities, an increase in income, and she will no longer be an independent contractor but a full-time employee.

Today she is flying here to retrieve her things and together we will make the 13 hour drive to her new home. Exciting for her, exciting for me with a dose of sadness since if all goes well I may lose her forever to New York.

My recent treatment went well. Platelet blood counts are in the right parameters. What was unusual about this appointment was it occurred on a Sunday. The hospital has so many patients people can now be treated on Saturday or Sunday if they do not need to see a doctor. I took advantage of Sunday and was pleased to find how quickly I moved through the familiar routine.

Now for the poem . . .
I learned this morning it is National Poetry Month, and April 27th is Poem in Your Pocket Day. The poem below I wrote and shared in January of 2014, and thought I would share again for this day and month of poetry.

When I wrote it I was tormented mentally and physically by my disease. The drugs I was treated with made day to day living difficult at times. Taxotere, Perjeta, and Herceptin have unfriendly side-effects. Today, the anguish I felt in 2014 has been lifted significantly with my continued positive response from TDM-1 and radiation. That anguish comes alive at times, but nothing like it did then-- thankfully.



Cancer It's Me

Cancer . . . it’s me.

Come later
when my life
is more complete.

Let me see wrinkles
so deep
and skin
so thin
from elasticity gone.

I beg you,
stop
the lassitude,
the pain.


Cancer . . . it’s me.

Let me see
my children grow
to be adults,
to be on their own,
that’s all I want.

Death too soon
is death unfair.
It takes from me
and from them,
too.

Memories missing,
pages empty,
lost to me,
by your bombardment,
hard to bear.


Cancer . . . it’s me.

Stop this game you play,
out-smarting, outwitting, out maneuvering
us all.

Unfurl your madness
unfurl your mystery
so others will know
and early steps into the darkness
will cease
because your dress
will finally look different
than other dancers
and my body
will see you
and take back what is mine.

Cancer . . .  it’s me.

Scans show your control,
reveal your destruction.
 
Each day
you grow.
 
Each day
I slow.

Stop hurting.
Stop growing.
Stop taking.
Stop stealing
my time.

Rationalization of death
does not exist.
No lessons learned.
Tragedy defines
my one day forgotten life!

Cancer . . . it’s me.

Wednesday, April 5, 2017

Early May Not Be Early Enough For Some of US

Anne Weston/Wellcome Images-- Cancer Cell
After I was diagnosed with stage one breast cancer in 2009, I harbored some negative feelings toward my surgical oncologist. That wasn’t always the case though. The care she gave me surrounding my stage zero diagnosis in 2005 was wonderful. From the phone call telling me my biopsy was positive for non-invasive cancer to my care following my bi-lateral mastectomy was spectacular. I appreciated her prompt, swift action. I also liked her personally. When I fully recovered, I was left with such hope I would never have to deal with breast cancer again. After I was hit with the second diagnosis I couldn’t stop myself from looking for reasons why my cancer recurred. She was an easy target.

I had seen her a few months before I found my tiny, painful lump signaling my cancer’s recurrence. I remember how upset I was that her trained hands did not find it first. The now five millimeter lump was growing on my chest a few inches below my right clavicle. How did she miss it?

After treatment for this second recurrence ended in December of 2010, life returned to normal, again. I had not seen my surgical oncologist since she surgically removed some extra tissue, to be sure she got it all, after scooping my tiny tumor from my chest right there in her office--as I said, she was swift. Now, since chemotherapy had become a part of my life, someone else was directing my treatment--a general oncologist. My third anniversary from diagnosis was about to be reached. At the time, I was excited about reaching that milestone. For people like me with Her2neu disease, if it is going to recur, I was told, it usually does so in the first 3 years. As time moved along, I was released from seeing my general oncologist every six months to waiting an entire year. Life was good! And, then, there it was. A tiny enlarged lymph node at the front of my neck marking round three of disease and the final chapter of my life telling me I had never been cancer free at all.

When the never-ending treatments for my disease became reality, I couldn’t stop myself from going through the “what if” scenarios. What if the margins between good tissue and cancerous tissue had been bigger after my first surgery? A few millimeters apart just didn’t seem large enough. Since I did not have radiation after my mastectomy because it was only offered to lumpectomy patients, my mind kept circling back to the question: could that have stopped the progression? And, what about those dormant cells that no one has control over. Maybe those cells never awakened therefore making the infusions useless. Maybe if I had been treated for a longer time period that would have made the difference.

There are simply too many variables and no way to ever know if anything could have been done differently to stop me from becoming stage four. It is all a guessing game based on statistics gathered through clinical trials. Contemplating all the “what if’s” and my participation in the “blame game” felt justified. I thought I had been wronged. Ductal Carcinoma In-Situ wasn’t supposed to become metastatic yet that is exactly what had happened.  My mental battlefield kept telling me, well if only this had happened, I would be okay. It was absolutely pointless.

Today, the more I research and read, the more I learn. Because of that, any anger I held toward my surgeon or any of my doctors has softened over time. In those readings I have found a few studies giving researchers reason to suspect that some breast cancers, especially the her2neu type like mine, are metastatic long before a lump or other physical abnormality of the breast can be found either by the patient or a detection device. Metastasis may even begin at the initial onset of disease.

Here is a recent article about early metastasis: here by Sharon Begley @sxbegle, December 14, 2016, entitled Cancer cells spread way earlier than thought, seeding metastases that cause most deaths.

This is an excerpt:
“Earlier research had hinted that some cancer cells set out for distant organs long before a tumor is detectable. A 2008 mouse study, here led by Christoph Klein of Germany’s University of Regensburg, who also led one of the new studies here found that cancer cells reached the bone marrow months before breast tumors formed.  A 2011 study of 30 women with “non-invasive” breast cancer found that eight actually had cancer cells in the bone marrow. In about 8 percent of non-invasive breast cancers, a 2015 study  here reported, metastases develop — even though “non-invasive” means the malignant cells can’t enter the bloodstream and travel to vital organs." . .
. . . "The new studies were done in lab mice. The study at Regensburg found that in mice given the human breast cancer gene HER2, the hormone progesterone triggers the migration of cancer cells almost as soon as they form — that is, before a tumor is detectable. And these early émigrés are better at forming metastases than cancer cells that depart the tumor later.
At Mount Sinai, Aguirre-Ghiso found that a gene called p38 acts as a brake on the departure of cancer cells from still-forming breast tumors. When p38 is silenced and HER2 is activated, the combination awakens molecules that, eventually, mobilize cancer cells into the bloodstream and on to the lungs and bones.”
Frightening, isn't it?

With this new information any anger still quietly lingering within me vanished. If this proves to be true, all of the therapies I have undergone from the beginning never could have been enough to stop the one mutated cell (or cells) floating in my lymphatic system or blood stream while waiting to lay claim on a distant organ. It wasn't enough to stop those cells that had left my breast years before there was any indication of disease. Catching my disease at stage 0 seems early, doesn't it? But, for some of us, early may not be early enough.



For further reading see links below:
http://www.nature.com/nature/journal/v540/n7634/full/nature20609.html
https://community.breastcancer.org/forum/8/topics/720617
http://www.cell.com/cancer-cell/abstract/S1535-6108(07)00372-8


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.

Wahoooo!

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?