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.

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

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!

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.

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!

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?

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.