The Funny Thing About Cancer

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I have cancer.  Technically I had cancer.  I’m now at a point which is labeled no evidence of disease. I often wonder what exactly does that mean?  This term has been tossed around seemingly interchangeably with remission. Medically speaking, I’m not sure if there is any difference, but it seems to me that the powers that be (The Great Cancer Gurus at the famous Cancer Centers) think that no evidence of disease might sound more positive than remission.  According to the National Cancer Institute (NCI) remission is:

  • A decrease in or disappearance of signs and symptoms of cancer.
  • In partial remission, some, but not all, signs and symptoms of cancer have disappeared.
  • In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.

There is no definition for no evidence of disease listed, therefore I’m sticking with the theory that it is a  made-up term intended to sound more appealing than remission.

I had some pretty serious lung cancer.  At first it was believed to be Stage 3b, but that was before my brain metastasis was found. So technically, I had Stage 4 Non-Small Cell Adenocarcinoma  with a brain mets. At 46 years-old I was given one of the worst diagnoses one could get.  According to the latest statistics, there was a five year survival rate of just 5.6%.  Holy shit. Imagine the moment that you realize that you’re going to die–quite possibly in the near future, and how you will die.  I felt as if I swallowed a brick. Unfortunately, I had extensive knowledge about the type of cancer I had and the various treatment options because my mother had been diagnosed with the same cancer just 10 months earlier.  I suppose stranger things have happened, but at the time we were all astonished–family, friends, and doctors.  How could this be?

When I first accepted that I had cancer, I immediately began to plan my course of action–the secret to overcoming obstacles is taking control of them, isn’t it? I consulted with most of the doctors that my mother had and they were all as shocked as we were.  I underwent weekly chemotherapy treatments, scheduled so that my mother and I could sit side-by-side to get our respective poisons.  Despite our dilemma, we had quite a bit of fun together during those long hours.  We were always hooting and hollering about something and having fun with the nurses. We were close to begin with, but now we shared a special bond. I also had daily radiation treatments for six weeks, and during the process an endless battery of scans to see what these barbaric treatments were doing to the cancer.  Forget what they were doing to the healthy cells!

Eventually, it was time for me to go to a major cancer center for the surgical portion of my treatment.  I went and had another scan to see what the final outcome of my chemo and radiation had been.  It appears that there were two new spots on the opposite lung.  The surgeon explained that they would go in and first biopsy those spots to see if the cancer had spread.  If it had, then they would not proceed with the original surgery that was planned as they could not “chase it all over.”  All of this was before they knew that it was already in my brain.

They operated, and when I awoke from the anesthesia I saw that they did not remove the main cancer on my right side.  So much for all the chemo and radiation–all for naught.  I was so sad.  That’s really the only way to describe it.  I felt sad.  Not mad, not scared–just sad.  I have always been a very optimistic person, and for the first time, I was looking at an outcome that I could do nothing about.  Even my sunny disposition couldn’t change this.

Several weeks passed, and I was scheduled to return to the surgeon for a post-op appointment.  I did not want to go.  For what? So they could check my surgical sites?  We had to go into the city; something we did often and enjoyed.  But this day, my husband had to drag me there!  I did everything but stomp my feet and refuse!  We did go, however, and were sitting in the exam room waiting when all of a sudden the doctor flies in, looking at my open file and says, “Well this is quite a surprise–turns out the biopsy came back benign–it hasn’t spread to the other lung.  We can schedule the surgery!” I was so confused.  I had accepted my fate and now, she was telling me that my fate had changed again. Of course, I was happy even though somewhat stunned.   I did have the surgery several weeks later.

A few months following, I developed some headaches and strange sensations in my left hand.  Then one night I was in ShopRite and the left side of my face wouldn’t stop twitching!  Another scan revealed the metastasis in my brain.  So, back to the city, to the neurosurgeon this time, and eventually some more scans, brain surgery and radiation.

No evidence of disease now for five years.  I go for CT scans and MRIs regularly; we have to make certain that I remain in remission.  I had one scare in which it was thought I had a recurrence in my brain, but it turned out to be necrosis (scar tissue) causing seizures.  Now I live, scan to scan waiting to see if my no evidence of disease status changes.  Cancer survivors live with the knowledge that in all likelihood they will have cancer again in one form or another.  How many people do you know who have been cured of cancer?  Oh, there are lots like me who have gone many years in remission.  The threat of its return is always there, hanging over you like a boulder waiting to fall on the Roadrunner–its always just one scan away. The funny thing is, once you have cancer, you can never not have it again. As I write this I’m thinking about the battery of tests I will undergo tomorrow and wonder if this time tomorrow I’ll still be able to say I had cancer.

Losing My Mother

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My mother passed away last year.  One little factual sentence can carry so much weight; make such an impact in your life. My reality is that I lost her when I was 52 years-old.  Maybe you think that I should feel lucky to have had her that long, maybe you can sympathize with me for feeling as though I’ve been cheated.  It probably depends on when you lost your mother, or IF you’ve lost your mother. As much as we prepare for the inevitability of death, you still can not escape the excruciating pain of losing your mother.  I always knew my mother would die; didn’t you? Really, in the ultimate scheme of life, parents should and usually do die before their children. I was even fortunate enough to have six-and-a-half years in which she was fighting lung cancer to give me plenty of notice. No surprises there.  When the time came, however, losing her was no easier than if she just walked into the street and was killed by a bus. Most days, that’s what it feels like–just a mess of blood and guts all over.

She wanted to die at home and so that is where we cared for her. We put a hospital bed in the dining room so she could be on the main floor in the center of all the activity. We were all with her when she died, myself along with my father, my sisters and my brother.  For weeks, we held her hands, massaged her legs and feet, sang to her, caressed her, lay next to her and held her in our arms.  We administered her medications, took care of her personal needs, and did everything we could to ease her physical pain as well as her emotional discomfort. And we drank–a lot–only in the evenings, but we went through so many bottles of wine it would have been embarrassing to put the recycling out curbside!  In fact, my mother didn’t miss anything we did, at one point she even told one of the hospice nurses, “they like to drink”! I told her to be quiet lest they think we were neglecting her! Seriously, were we supposed to chaperone her journey to death with nothing to assist us?

Have you ever been with someone when they died? It’s surreal.  I’ve given birth to two children–what a glorious moment when a child takes his first breath!  In a strange way, it’s similar when someone takes their last breath. When you think about it, it’s just two different points of the spectrum.  Entering and exiting. Of course, the birth of a child brings such joy, while death brings such despair.  I’m not certain of many things, I will say, however, that I know that we all have souls (for lack of a better word): some “thing” that can not be identified as other body parts can be. We have them whether we recognize them or not. When my mother died, her soul left her body, and her body became nothing but a shell–she shed her withered, weary body as a snake sheds its’ outer skin.  One moment she was there, labored breathing, chest heaving, and then nothing–it all left; she left. Astonishing.  All the pieces that made this unique human being my mother were gone: her smile, her laugh, her eyes, her voice, vanished with one last breath.

Understandably, at the time I was too overwhelmed with grief to have any other perspective but my personal loss. Now that some time has passed, I can look at the actual moment of her death (and believe me, I’ve relived it over and over) and appreciate the beauty of it and the privilege to have shared it with her. To witness another human leave this world is not very different than witnessing another human enter this world.  Both experiences are indescribable and unforgettable.

“Once you lose your mother, nothing is ever the same,” a dear friend whispered in my ear as she hugged me at my mother’s viewing.  A fact I am aware of everyday.

I Don’t Run Anymore

I used to run.  Okay, maybe jog is a better description. (I really don’t like the word jog as it reminds me of the 80s when everyone wore jogging suits, but nobody jogged.  When I hear the word I picture a rotund Al Sharpton with  too many gold chains around his neck).  Regardless of my pace, though, I did run on a regular basis.  At first, it started as a way for me to conserve time.  If I could walk for an hour, couldn’t I get the same benefit from running for thirty minutes?  It made sense to me.  So I undertook the Couch to 5K plan running on my treadmill.  Every afternoon I would come home from teaching, exhausted from having run around all day with a hectic schedule teaching English to High School students, and get my workout in.

As I would enter the house, I’d throw my school bag on the floor, just like my own kids did years before, change into my workout clothes and head to the basement.  I tried not to think about what I had to do that evening: what I was making for dinner, how much grading or lesson planning I needed to accomplish, or anything that would prevent me from taking the time I needed to jump on that treadmill.  I needed this time for myself. The Couch to 5k plan starts off with mostly walking with short bursts of running.  Little by little the running time increases and the walking time decreases and within four to six weeks you are running the entire workout! Before you know it, I was pounding that treadmill full speed–well my full speed. I was even ready to venture outdoors without being embarrassed.

I needed to exercise for several reasons, not the least of which was my overwhelming anxiety.  I had always been prone to general anxiety as well as full-blown panic attacks, but my hectic life, along with a troubled teenage daughter, was really beginning to wear me down.  You see, my daughter experienced a trauma at 13 and never recovered emotionally. In addition to the emotional issues (or perhaps because of them) she started to use drugs as a way of escape.  Her story is not unique–millions of you deal with this everyday. I tried everything I could to save this child.  When I discovered the initial trauma, I immediately found her a therapist she was comfortable with.  When I learned she was cutting, I went along with what the therapist said-let her practice clean, safe cutting until we could get her beyond it.  Imagine what it is like having to go out and replace a knife you threw away, knowing its only purpose will be to slice your baby’s skin.  When she finally confessed her drug problem, I got her into the best rehab I could find–when she relapsed, I did it again.  But then one day she broke me: she chose to leave home and live with her boyfriend.  She was 18 years-old now and a Senior in High School (the same one I taught at) and she simply decided to leave home.

Something broke inside me the day she left, some might say it’s a broken heart, but it feels like more than that–it feels as if my entire being is broken–is it possible to have a broken soul?

Somehow, pounding on that treadmill every day helped relieve some of my despair.  I felt that the more I ran, the stronger I became, and the stronger I became, the better I could deal with this emotional apocalypse.  I would actually say to myself as I was running, “I’m not going to let her kill me.”

In time, I was able to regain some semblance of my previous self, and looked forward to my afternoon runs. While I was still anxious, I learned how to manage it with drugs and exercise.  I really was becoming a master at hiding it from my loved ones. Eventually my daughter came home–for a while, but she continued to have serious problems and began the pattern of going in and out of rehab for many years.

Then there was another tragic development in my life of which I had absolutely no control: my mother was diagnosed with Stage 4 Lung Cancer.  The uncertainty and fear that a cancer diagnosis comes with was suddenly upon me. Immediately my siblings and I went into action, researching options, encouraging her to get second opinions, and to shop around for doctors and treatments we were all comfortable with.  But still, as much as one attempts to take control of a situation like this, the reality is that most of what happens is out of our hands. Once again, I found myself on the treadmill pounding the anxiety, the fear and the heartache away. My thought process now was that if I improved my health, I could improve hers.  As silly as it sounds, all I could think while running was, “breathe for her.”

I continued running and imagining myself breathing for my mother for another year until I was diagnosed with Stage 4 Lung Cancer.  Yes, that’s correct, not an editing error.  Lung cancer.  And so, my running days were over as I faced the monumental task of fighting for my life. Chemo, radiation, two lung surgeries, a brain metastasis requiring neurosurgery and more radiation. I’ve done well– six years later and I’m still here! I don’t run anymore, but I have vivid dreams in which I am running, breathing in deeply, fully emptying my lungs as I exhale, heart pounding and it feels awesome.

Waiting for Doctor Running Behind As Usual

imagesHow long is an acceptable time to wait in a doctor’s office?  I posed this question not long ago on Facebook because I had been waiting in a doctor’s office for an hour and a half. No kidding. I was becoming more and more agitated as the minutes ticked by. This wasn’t supposed to happen–again.  A couple of months prior I went to see this new Endocrinologist for the first time in her other office:  I sat there for over two hours.  On that occasion, after an hour of being left to fester, I approached the reception desk to inquire about the delay. I was informed that I was signed in and given a look which implied I was a little too pushy (maybe that was my own insecurity).  This waiting room and reception area is used by several doctors in the practice, so it was difficult to determine who might be ahead of me in the queue.  By carefully observing any interaction between patients and the reception desk, I was able to determine which patients were waiting to see Dr. Running Very Late, so I asked a few of them if she always ran this late, but I never received a verbal reply, just a little smile (or was that a smirk) and a sideways nod.  (What does a sideways nod mean? yes? no? sometimes? don’t want to say?). Eventually I was called in and a very efficient nurse took my vitals. Okay, we’re making progress. Oh, but I  should have known that being brought into an exam room does not mean that you are going to be seen anytime soon–those of you who have ever had to sit in a freezing exam room, naked, with nothing but a thin paper gown draped over you, while waiting for your Gynecologist to come in, know exactly that to which I refer!

 Finally, Dr. Sorry to Keep You Waiting comes into the room, exuding a warm, caring energy. With a very relaxed air about her she begins to review all of my medical information–and there is quite a bit–as if she has no other place to be. She is charming and charismatic and I just can’t bring myself to be anything other than nice to her. In an instant I can no longer think about the words that I had imagined I would say; she’s thorough and kind, and I know that I will give her a second chance. When I check out, I am told that she is only in this office one day per week–that must be why she’s so behind here–so I make my next appointment at her other office, the one where she sees most of her patients. Problem solved, or so I thought.

So, there I sit waiting in the new office for an hour and a half, with my 82 year-old father waiting for me in the car.  I keep running out to him to see if he wants to come in or if he needs anything.  (Why he insists upon sitting in the car, instead of the comfortable, air-conditioned waiting room, I’ve come to believe was just part of a cosmic conspiracy to make me lose my mind that morning).  One hour and forty-five minutes and Dr. Late Again strolls in.  She, of course, apologizes for the delay. Really?  Isn’t sorry something you say when you unintentionally inconvenience or cause discomfort to others and take action to prevent it from happening again?  Somehow, I doubt this is the case.

“Are you always this far behind?” I ask, unable to hide my irritation. (And for some reason, I did feel as though I wasn’t supposed to be annoyed–or at least let on that I was annoyed).

She smiles and responds, “Well, the first patient of the day hadn’t been here for over a year;  he had all his medications mixed-up, and that took quite a while to straighten out.”

The best I can do is raise my eyebrows as if she owed me more.  And she did owe me more. . . me and the rest of her patients who were there just waiting our turn.  Once again, however, she begins to work her magic and it becomes easy to forget the waiting when she seems so genuinely concerned. She makes me feel as though she sincerely cares about my health and will take whatever time it may to make sure that everything is covered–thoroughly. Isn’t that what we want from our physicians? Once again I leave her office not happy with the wait time, but very satisfied with the medical treatment I received.

This time I make my next appointment at her main office and it is the first appointment of the day:  9:00 a.m. Now I’ve got the ticket–this is how I can outsmart Dr. Tardy!  The day of the appointment comes and  I arrive five minutes early, but the medical assistant takes me right in, takes my vitals and enters all the info into the computer. Perfect. I feel like the cat that swallowed the mouse. As she is leaving the room, she casually mentions, “She’ll be here in about twenty minutes.”

“Excuse me?” I spit out.

“It takes her about twenty minutes to get here, so she should be here around 9:20.”

“Where is she coming from?” I ask, astonished that she is not even in the building!

“I just didn’t want to leave you hanging–she’ll be here soon” she whispers as if it’s a secret and closes the door.

So much for a straight answer.  At this point, I start looking around for cameras, because clearly this is a joke! No cameras, no joke, and I don’t see Dr. Habitually Behind until forty-five minutes later.

I’m starting to become conditioned to her lateness. The way I see it,  the situation is getting better–my wait time is diminishing with each visit. One day, I might have to call her Dr. Punctual, but I’m not holding my breath!

 

How to Raise an Addict in Only 18 Years

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  • Be there for her and make certain she knows how loved she is.  Tell her everyday.  Give her everything you would have ever wanted but didn’t have growing up.  Keep her active: ballet, tap, gymnastics, piano lessons, t-ball, softball, soccer, Girl Scouts.  Take part wherever you can so that she sees just how important she is to you.  Get involved in her school–hell–become a classroom mom and volunteer in the PTO.  Why not become president?  Don’t forget that playdates are important; you want her to be socially adjusted.
  • Emphasize the importance of family, especially grandparents, aunts, uncles and cousins. Allow her to spend time with her grandparents so that she will always have memories of them when they are gone.
  • Bring her up in the church.  Let her see first hand the power and beauty of faith. Of course, make sure she knows she is a blessing to you and your family. Set an example by volunteering at church events–and why not teach CCD while you’re at it?  What better example of showing her how important it is to share talents and faith. At this point, she should be ready for some volunteer work of her own.  Encourage her to volunteer at the local hospital several times a week.
  • Don’t forget to always remind her how smart she is–her grades are good, but she needs you to reinforce it. Let her know how beautiful she is, especially during those adolescent years when she feels awkward in her body.  A word of caution here, you want to help build her self-esteem, but you don’t want to overly emphasize outward appearances. Character is so much more important.
  • When she struggles with relationships with other girls, try to let her work it out.  After all, these are important life skills.  Be there for her when she cries and feels slighted by the others, and try not to cry in front of her when she is so distraught because she didn’t make the middle school cheerleading squad.  If she is snippy with you during adolescence,  be patient–growing up is not easy–she’ll outgrow this stage. Believe fully that she absorbed all the morals you have worked so hard to teach her!
  • When she is having emotional problems, get her into counseling immediately.  If she can’t resolve her issues by talking with you, then you must get her professional help. And dear GOD, when you discover that she has been cutting, you must allow her to do so “safely” until she can work things out.
  • Most important:  when she brings home the sketchy boyfriend DO NOT, I repeat, DO NOT object to him as you will only drive them closer together.  Know in your heart that this too shall pass.  However, when he is arrested (for stealing) it’s time to draw the line.  Clearly she understands that this speaks to his character.  She’ll have a fit, tell you that you are unfair and judgmental,  but you know that she’ll get over it when the dust settles.
  • When she sneaks out with him a few times, call the police–he is over 18 and she is only 17.  They will bring her back, for now, but they will remind you that she turns 18 next month and then they won’t be able to help you. Or her.

Welcome to My World

This is my very first post.  I’m so excited to start blogging!  I’ve wanted to do this for a long time now and am finally working up the nerve to do it!  I love to write, but I’ve always kept most of my writing to myself.  I write about personal experiences, intimate details of life that I have always been afraid to share with others.  Most people don’t like it if you talk about them, and they hate it if you write about them!  I’m usually just honest in my observations about myself and others–of course perspective is everything–however, understandably, most people don’t like to have their lives examined and commented on. So, Carol Raymond is my nom de plume in order to protect the innocent!

Don’t get me wrong, I’m not gossiping. I’m just trying to get through life like everybody else, perhaps learn a thing or two along the way, and have a good time.

I hope that you will enjoy my musings!