My two cents after two years: part two

Cancerness.

This word doesn’t really exist or have a true definition, but it seems to encompass all qualities that are related to cancer. 

The inherent cancer parts of cancer.

There are so many facets to cancer in general.  Each kind of cancer has its own persnickety descriptions and terminologies.

For example, I can tell someone I had cancer.

If that person asks what kind, sometimes I will respond: blood cancer.

If that someone wants to know the specific blood cancer, I respond: Non-Hodgkins Lymphoma.

If someone wants to know the staging, I can add that it was Stage 1/e Non-Hodgkins Lymphoma.

If I really want to get detailed, I’ll throw in extra descriptors: Stage 1/e Mediastinal (Diffuse) Large B-Cell Non-Hodgkins Lymphoma

See?  So many fancy names and descriptions.

My oncologist did not specifically tell me the fancy terminology outside of Stage 1/e Non-Hodgkins Lymphoma.  It’s possible that he didn’t feel the need to be that specific.  I found out the information in pieces by gazing at my medical records, conversations with doctors at my oncology office and those at MD Anderson, and of course research.

As a future librarian, I’m part of a group of people that will venture forth with the following philosophy: knowledge is power.  It’s pretty much ingrained in the ideology of librarianship, but even outside of librarianship, it’s a giant dose of truth.

However, I have one piece of advice about personal research regarding medicine: take it with a grain of salt.

It’s incredibly easy to be caught up with WebMD, anything produced by the National Institutes of Health (NIH), and the millions of forums and blogs out in cyberspace.

All of it will scare the crap out of you.

I mean this with no sense of irony as I write a cancer-related blog.  I mean this in complete sincerity.

When I was first diagnosed, I gleaned as many information sources I could find concerning cancer statistics, especially ones concerning survival rates.

What a mind fuck.

The precious lucid moments I had between treatments shouldn’t have been concentrating on using my graduate student access to research academic versions of Medline databases at my university’s library in order to find prognosis statistics.

I do believe it is empowering to use information sources to understand cancer causes, symptoms, and treatments.

This might be a philosophy encouraged for doctors as well since my doctor even gave me a printout from PubMed Health about Non-Hodgkins Lymphoma during my diagnosis*.

However, to understand medical research is like opening the server room at any IT department: a lot of friggin’ wires. 

I understand this even more since I have been undertaking an Evaluating Information Services course this past semester.

For example, I found out there is a whole code of ethics for research.  I think on some shallow level, I understood this, but one look at this report will tell you that there is no fooling around:

http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html

Aside from approaching a project ethically, one has to take into consideration the following: previous research (i.e. undertaking enough reading to make your eyeballs bleed), various research models (i.e. make it so complicated that no one understands what the hell you are studying), and statistical analysis.

Statistical analysis. 

It sounds like a root canal would be more fun, right?

The permutations that can result from various data collected seem innumerable.  If you truly look at data and apply statistical methods to analyze it, there is the possibility that there are no correlations or too many correlations between data sets. 

Considering these concepts in retrospect is illuminating when it comes to understanding cancer research and statistics.  Discovering correlations takes time and skill.  Then to disseminate all the information to a hungry public eager to learn about their potential longevity in the face of treatment is an equally difficult task.

It is humbling how carefully these types of research take place.  It is overwhelming to think that there are so many pieces to take into consideration.

Enough to make me want to shut the hell up about the negative issues with cancer research.

So, one big thought that I’ve been working through these past few years post-treatment:

Take it one day at a time, or better yet, one minute at a time. 

Suffering over what could be or what will come next is not a good solution.  I have experience with this.  Before going through biopsy surgery in August 2011, I tired out my chemo-ridden self with worry:

What if it is still malignant?  I will have to go UT Southwestern and do a stem cell transplant.  What the hell is a stem cell anyways?  I will live in a bubble and no one will be allowed to visit me.  My cats will steer clear of me because I will have done the human equivalent of “control-alt-delete” and smell weird.

And so forth.

Death was also a consideration.  Death tends to swagger around everything we do as people.  The finality of it is heartbreaking (which is an understatement in itself). 

In reviewing survival rates for Non-Hodgkins Lymphoma, the statistics were, I’ll be honest, a bit grim in some areas, but most positive in others. 

I recently completed a Light the Night walk for the Leukemia & Lymphoma Society (LLS) in October.  There were different balloons that the walkers could carry depending on their level of support.  Red balloons went to people who were just plain supporting.  White balloons went to current patients and survivors.  Gold balloons went to people who were walking in memory of someone. 

There were a lot of gold balloons during that walk.

The image began to alter as the walk ran out of red balloons and began handing out white and gold balloons instead, but the initial image of arriving to the walk comprehending this meaning was tear inducing.

It made me more appreciative of how well I was doing, despite the annoying little post-treatment symptoms.

Coming back to the biopsy surgery, I recall having to start the process of training myself not to get too far ahead mentally.

My mind would wander: tomorrow is my surgery…wait, what am I doing now?  I am cooking.  I will concentrate on the boiling water and pull out the necessary utensils to finish cooking.  Hmm, those knives sure are sharp.  I wonder if there will be sharp knives used for tomorrow’s…ok, shut up.  You are boiling water.

I’m learning that this takes practice and cancerness is a lesson in patience.

Moments are singular pieces of time and moments stacked up are life. 

I urge you to look at the moments.

*Note: I just noticed recently from the URL at the bottom of the printout that was given to me that the page was last updated in February 2013.  It’s interesting to see the evolution**.

**Additional note: from a research perspective, it’s beneficial to refer to sources that update regularly.  Otherwise, you might not be getting factual or up-to-date information.  Just some friendly librarian advice.

My two cents after two years: part one

It’s been two years this month since I finished my last chemo cycle.  I vaguely recall some of the details of that last day.  I don’t remember the exact date, but I suppose I could look it up if I really wanted to know.  It was sometime in early September, that’s all I remember.  I remember it being a bit different than previous chemo visits because I was so determined for it to be over.  I remember counting out the bags of drugs in chronological order as they finished.

Rituximab…over.

Cyclophosphamide…over.

Doxorubicin Hydrochloride…over.

Vincristine Sulfate…thank goodness you’re over.

The last 2 bags were the smallest and took less time to drain into my body.  I think I was sitting up in the chemo chair, gripping the armrests with my music blaring in my earbuds silently repeating some kind of mantra.  It probably went like this:

Almost over.  Almost done.  This is it.  Just a few more weeks of recovery.  Almost over.

When I was unplugged from the IV machine, I remember wishing I could kiss the floor in gratitude. 

In reality, I had done 2 chemo cycles over the clinically accepted number for someone going through treatment for Non-Hodgkins Lymphoma.  The question of a secondary form of treatment didn’t come up until a few months after this moment.

Regardless, I rode the chemo slump following this treatment like a seasoned professional, even allowing myself to take in all the rest I needed so I didn’t exert myself too much.  I was so well acquainted with the process, it felt like second nature.   I knew when I was going to hurt, what day would depress me the most, when I needed an additional Neupogen shot, and when I needed to take a walk.

I was not prepared, however, for the months and now years that followed the treatment.  No doctor prepared me for the aftermath.  I have learned much in these past years and this I will share with you in different parts. 

Physical changes:

When you are going through treatment, you have been loading your body with chemicals, drugs, and radioactive materials.  When you stop all of that, your body will react in its justified way.  It needs to detox and will take it out on you.  Know this: it’s not your fault. 

For me, after the initial elation of finishing treatment, I was cranky and depressed.  I felt aches all over my body that traditional science describes as a “somatic” symptom of the depression.  Despite this, I’ve noticed that I still feel these aches in my bones when the climate changes or when I get sick.  They seem somewhat different from the aches I felt prior to treatment. 

My period went away after my first cycle of chemo and I went through menopausal symptoms.  Once the chemicals were no longer being pumped into my body, my body went back to its form of normalcy and I felt like a prepubescent teenager all over again before my menstrual cycles became regular.  This took almost a year.  My dear husband has seen me through all the emotional turmoil caused by hormones balancing post treatment. 

I gained 25 pounds from cancer treatment.  Most people think that cancer causes people to become waif-like, but that is only from particular forms of treatment or particular cancers.  Some drugs in the past that caused nausea and vomiting almost instantaneously once inside patients are no longer used or are used infrequently.  Also, every type of cancer has a different set of treatments and every individual battling a form of cancer has a treatment plan tailored to him or her.  Cancer treatment is not a one-size-fits all set of plans.  I highly recommend reading The Emperor of All Maladies by Siddhartha Mukherjee for historical information pertaining to this.  It’s a fascinating history on how doctors figured out that every cancer is entirely unique.  I gained weight from the steroids I had to take following each treatment.  I have since lost 15 of the pounds I gained.  Unfortunately a sign of Non-Hodgkins Lymphoma is rapid weight loss, so I lost the weight slowly and deliberately, so as not to concern my doctor.

My stomach and digestive system were a mess after treatment.  Chemo basically kills everything in your body, including healthy bacteria needed in the digestive system.  I had to take probiotics and ate yogurt to restore the needed bacteria.  This took a few months to begin feeling a bit normal.  Also, since I’m a bit unique with a lack of gallbladder, my liver took the brunt of flushing out all of the toxins.  This resulted in many anguished trips to the toilet to say the least.  I won’t elaborate; you get the idea.

My immune system has been weakened, but I have some physical signals that help me cope.  For example, I work in a public library, where there is usually at least one sick person who visits a day.  I still wash my hands after bathroom trips, before eating food, or after touching something in the library that seems germ-ridden.  However, I’ve learned that washing my hands before going home has helped considerably.  A 30+ minute drive from work to home allows ample opportunities for depositing germs onto the wheel of my car, my face, or even ingesting them when I munch on a much-needed snack.  I can tell that it helps because I don't feel the following symptoms as much as before.  The days when I feel a bit flushed and slightly achy seems to be a warning to me that I need to rest and let my immune system recalibrate.  These signals haven’t failed me in the last couple of years.  This isn’t to say that I haven’t been sick a few times, but I’ve avoided some major illnesses or bodily distress by paying attention to these signals. 

It would seem more holistic for cancer treatment to include some information regarding the side effects of chemo and radiation during the cancer recovery period.  Sure, I've seen my doctor post treatment multiple times, but that has been for bloodwork, port flushes, and PET scans.  My oncologist is making sure I don't get cancer again.  I'm making sure that I feel better and get stronger after the whole process.

I hope that in writing some of these things down, it will be helpful for those going through their own cancer recovery stages or witnessing someone else go through this.

More thoughts to be continued in part two...

xkcd

This is one of my favorite xkcd comics about cancer.  This pretty much sums up post-treatment paranoia.

Small but mighty.

Warning: if you are squeamish about blood or blood tests, you might reconsider reading this post.

“Small but mighty” was the name I gave my “good” vein on my right arm this past Wednesday when I did the voluntary biometric screening for my employer.  I always have plenty of information concerning my red and white blood cells, but I figured it couldn’t hurt to learn more about my glucose, cholesterol, and all those other important numbers that seem to infiltrate anyone with entirely fused bones (aka: 27 years of age and older).  Since my own medical hysteria is aligned with someone possibly twice my age and with the allure of a half price recreation center membership, I figured why not hear a professional tell me that I’m overweight, right?

After checking in, a form is handed to me that asks existential multiple-choice questions such as: what do you do when you feel angry? Or, how often do you experience stress?

I turn it in and wait in line to have my blood pressure checked and BMI calculated. After that, I wait in line to have my blood drawn for the other labs.  This is when I inform the nurse that I have a “small but mighty” vein in my right arm.  She feels it and nods saying that helpfully she can get it to rise.  She ties the tourniquet around my arm and hands me a rubber ball that I begin to squeeze.  She feels it and thinks it is good to go.  I take a breath and she inserts the needle.  A few moments later she says: “I don’t know if ‘small but mighty’ is working for you today,” to which I pause, take another breath and tell her it will be one moment.  Sure enough, it begins to flow into the tube.

I always look away, but I generally know what’s going on.  It is strange to be so intimately acquainted with my own veins.  I used to hate blood tests.  Well, I mean, I don’t think anyone enjoys having their blood drawn, but I was one of those patients that needed to lie down and my jaw would shake from nervousness.  Having blood cancer was bad coincidence served on a platter in front of me.  I had to suck up (pun intended) the blood test thing pronto once the treatments started.  

The vein in my right arm, actually, no longer has feeling from the number of times something has been stuck in it.  I have a tiny little brown line on it from the number of times it’s been poked, though it had surprisingly remained unused for a couple of months.

A few weeks before the biometric screening, I had an incident at my oncologist with the phlebotomist who I like a little bit less each time I go there.

This phlebotomist has drawn my blood a few times, but she was not a believer about my “small but mighty” vein.  She felt my right arm and decided to forego it because it felt like a “nerve”.  I tried telling her that, in reality, whatever nerve was near it was damaged, but she wouldnʼt hear me out.  She tried my left arm instead, which I knew with the tiniest bit of smug satisfaction would not work.  

I canʼt really complain too much because she didnʼt want to cause me pain.  She tries my left arm and sure enough, the twisted vein won’t cooperate.  I’m holding pressure on it with gauze, once she’s removed the needle, waiting for a bandage as she is looking down at my hands. She has me run my hands under hot water to bring the veins in my hands to the surface.

I grimace.

She had done this to me before, drawing blood from my hand, and it dripped out so slowly, I thought an entire moon cycle had passed.

I was good, though, and followed her instructions. After inspecting my hands and deciding my right hand was better, she put a tourniquet on my right wrist to make the veins rise to the surface. She then proceeded to put the needle between two knuckles and it hurt so badly, expletives nearly made it out of my mouth.  She sees the look on my face and says, “ok, two tries is all I get” and pulls the needle out, much to my relief. I then rub my hand and say, “canʼt Melissa [the chemo nurse] get it out of my port?” and they decide they will ask.

A few minutes later, I have cotton and tape on my left arm and right hand, and Iʼm led to a patient room to wait for my doctor.

When my doctor comes in, he looks at my bandages and assesses rather astutely, “apparently, they had trouble getting blood out.” I nod. “Why donʼt they just take it out of your port each time?” “I donʼt know,” I respond, “they usually take it out of my arm despite the port.”  He shakes his head slightly.

The sensation of having blood drawn from my mediport is a bit disorienting, despite the nice lack of arm violation.  It does indeed feel like something is being sucked out of my chest.  I always get a bit woozy and I make a face at the color of the blood in the vials once it’s over.  Clearly the port is attached to something going to my lungs, rather than away, because the blood that is drawn is always a dark, almost purple, red color.  It looks viscous and fake.

I mention the mediport to the nurse at the biometric screening and she responds: “oh yeah, definitely easier than the arm,” as she is writing my name on the labels on the vials.  “However, sometimes it requires de-clotting medicine if done a lot.”

“De-clotting medicine?” I ask.  I’m not familiar with this concept.

“It’s the same medicine given to patients who are having other heart or clotting issues.  It’s basically a blood thinner, but it goes directly into the port, which is relatively simple, but not a ton of fun.”

I shiver a bit.

Maybe relying on my “small but mighty” vein was a good thing after all.

Now, I don’t have to think about the next blood test until June.

I am thanking my lucky vein.

Not perfect, but it'll more than do.

It has occurred to me that my cancer story lacks a postscript.  

Last I left off, I was doing business development in a retail environment.  I had decided to stop school because my job was becoming far too stressful.  

Much has ensued in the previous months.  So much that it seems ridiculous to recount it, but when I think back, I believe there was a purpose to taking a break from writing.  Once I was diagnosed and going through treatment, I found myself isolated and internalizing the majority of my emotions.  My main outlet was writing out my thoughts and this greatly protected me from having the reality of cancer bash me in the head.  

Instead, I have spent the past months recounting my survivorship.  A friend of mine had cautioned me once (having been a young adult that went through cancer herself): some people tend to focus on their cancer survival and it prevents them from moving on with their lives.

I took this to heart, but even now, I sometimes find the awkward inclinations to bring up my cancer.  I suppose the fact that I’m still in the period of time, post-treatment, when cancer recurrence is most likely isn’t helping my case.  I find myself less concerned about dying and more frustrated that if my cancer came back, I might be kicking and screaming to the hospital.  Perhaps I was more brave when I was going through all the tests and treatments because I didn’t know any better.  If I had to do it again, I don’t know exactly how I’d react.  

I get uncomfortable now when I have to go back to my doctor for blood work, port flushes, and PET scans.  It’s confronting a past I don't necessarily want to remember.  I know there is a good reason for the doctor visits and I feel lucky, oddly enough, that I get checked routinely.  However, I find myself with symptoms akin to PTSD for the strangest of triggers.  I’m already nervous about having the surgery to remove my port even though that is about a year away.  I’m tired of being a pincushion, a science experiment, a life in precarious balance.

Health-wise, there isn’t too much to report, but it is interesting the things I’ve discovered in the post-treatment months.  I’m still having some cognitive issues including forgetting memories and losing my train of thought often.  It is somewhat rare when I don’t feel like I’m in some kind of fog.  I've learned to gracefully recover from these moments and many people tell me they don't notice anything.  I've had to take precautions to adapt to these changes is all.  I jot down, possibly, more notes than necessary, especially daily tasks.  If I don't make it stupid easy for myself to remember, I'll just lose the thought.  

Aside from the minor cognitive impairment, off and on, I’ll notice some neuropathy in my fingers and toes.  Days where the air is damp or when the weather is changing means my bones ache.  I cannot tolerate alcohol like I used to and fear my poor liver has become damaged with my lack of gallbladder and taking the brunt of filtering out chemo chemicals.

I had a recurrence scare last summer where a PET scan didn’t come back crystal clear, sending me on another road trip to MD Anderson to check in with the radiation oncologist I met the year before.  She looked at the results and found nothing of concern, just some pesky radiation remnants.  My mom and I had walked into the main building of MD Anderson with purpose and I looked around at the children and adults in the lobby obviously going through treatment.  My hair had mostly grown in by this point and I don’t think I looked like a former cancer patient.  I empathized with them but in my head silently repeated a mantra along the lines of: I will not be doing this again, I will not be doing this again, I will not be doing this again....

I recognize that cancer recovery is tough, but I also recognize it is a life path that is mimicked in a variety of circumstances.  I find myself becoming more and more comfortable in my skin. 

The balance in my life might be precarious, but it has become strengthened from many external sources: my soon-to-be husband, my new job, the satisfaction of returning to school, my friends and family.

I see myself writing in the future and my post-treatment recovery thoughts will be reflected in a more positive light.

Stay tuned...

Life? Or Theater?

One of my favorite artists, Charlotte Salomon, posed this question: is it life? Or is it theater?  She made around 800 small gouache paintings depicting her tragic life and secured it in a book.

In 2007, I visited Amsterdam.  I was traveling by myself and staying in a hostel.  It was cheap and clean and cramped.  I shared a bunk bed in a room the size of a large closet with 2 additional bunk beds.  I was the only American and, surprisingly, the oldest traveler.  There was the lone ginger-headed and cheerful Aussie teen girl who slept on the bottom bunk.  There were the Aussie brother and sister sharing another bunk and a young English couple who tittered when I said “cell phone” rather than “mobile”.  Behind their backs, the Aussies called them “the Limeys” in a way that seemed almost affectionate rather than derogatory. 

Charlotte Salomon’s precious book is held in the Jewish Historical Museum in Amsterdam.  When I made my plans to go to Amsterdam, this was one place I had to go.

My hostel was farther into the city and it took 2 zones worth of strippenkart to get to the museum, only to walk a few blocks and find the building composed of multiple old synagogues.  After searching through the religious artifacts, that were symbolic that they survived the Holocaust, I found no sign of Life? Or Theater?

It was only a glance in a corner when I came to the realization that the exhibition was going through remodeling and the book was not in fact on display.  I took a step beyond a velvet rope in hopes to sneak a glance at the book.  I longed to experience its momentum through its mass and size.

It was not there.

Instead an empty glass case only hinted at its former occupant. 

I suppose I could have spoken up and pleaded and asked the museum staff if I could see the paintings since I had come so far to visit it.  But I didn’t.

I picked up a CD of its digitized images in the gift shop.  The middle-aged woman who worked at the gift shop was intrigued by my presence and I could feel her gaze on my back as I looked at postcards: we rarely see young people here.  Even when paying for a bookmark and the CD, I could tell she wasn’t sure what language to speak.  Dutch? Hebrew? English?  She smiled kindly to me when I spoke English, as I only knew a handful of basic Dutch formalities, my Hebrew non-existent.

When I left the museum, I had a tiny bit of disappointment.  I didn’t get to see the famous piece that resonated with me.  I traveled over 5000 miles to see a piece of art that wasn’t there.

In its own trickery and timing, something surfaced within me.  I felt the elusive quality of life’s events.  This was a taste.  A tease. 

Sometimes things just don’t work out.  Sometimes things just don’t make sense.

I ask myself everyday though, not necessarily intending to receive an answer: so what is it then? Is it life? Or is it theater?

Postscript: on this same trip, the Rijksmuseum was also going through remodeling, so I saw little of that one too.  However, the Anne Frank House and the Van Gogh Museum were awe-inspiring.  I also found out recently that the Dutch no longer use strippenkart to take the tram.  It was basically a line of skinny perforated tickets that got stamped with times and then torn off when expired.  It seemed a bit old-fashioned at the time, but now knowing I have unused tickets hiding somewhere in my belongings makes me feel like I have a piece of something historic.

Quitter

They say a sign of maturity is when you understand your limitations and follow them.

I have had a humbling Spring to say the least.

I am already all too aware that my body is still in post-treatment flux and is continually evolving to a better state of health.  This evolution, however, is taking its time.  It feels that when I look back to my early 20s, it was decades ago, that I’m looking across a giant bridge at myself on the other side.  I feel aged by circumstance.  Fences run around my once-boundless energy.  I turn a corner to pick up some speed and deter it, but there it is, yet another wall.   

Post-treatment fatigue and joint pain has caused much alarm and frustration for me in the past few months.  When I brought these issues up to my oncologist during one of my follow up appointments last month, he said it might be depression.  Determined to prove him wrong, I began systematically removing items out of my diet that could be the source of the fatigue and pain.

I have quit eating wheat and dairy.  I have quit drinking coffee.  Ok, ok, I haven’t perfected these pristine dietary standards, but for the most part, I’ve been a good girl.  You might think I dove into the sea of the silly.  In reality, desperate times call for desperate desperateness. 

I’m surprised to say that a diet with lean meat and lots of vegetables seems to be the best for me thus far.  Green juice has made its way back to my normal routine.  Part of the annoyance factor is the awareness about the dark sides of the food industry.  It is part government agriculture subsidies, part chemical manufacturing, part marketing and advertising. 

This awareness ties back to the mystery surrounding my initial diagnosis.  It is like everything is bad for you.  Anything can cause cancer.  Better yet, anything can prevent cancer.  To come up with an informed decision is impossible.  Everything contradicts everything else.

Worse still, this cynicism is leaking into other parts of my life. 

Don’t get me wrong, there is more Pollyanna than not within me.  It’s just that my tolerance for bullshit is getting smaller by the day.  Then again, I can be extraordinarily patient with other people, but not with myself.  This, of course, has negative repercussions.

After nearly a year of dealing with school woes: financial aid, student status, withdrawing from classes, registration, getting this and that approved, waiting for replies from the Graduate School and the College of Information about my future graduate career, I’ve come to a significant conclusion:

I’m exhausted.

I’m also exactly where I wanted to be with or without school: I have a job with benefits that can cover my formerly cancer-ridden ass (or should I say lung?) and any potential shenanigans that might ensue.  I have a 401(k) and paid vacation.  I like my coworkers and workplace.

All in all, I’ve become the responsible grown-up despite my cancer-ness.

So, why do I need to pile any additional stress? 

I left work a tiny bit earlier Monday thinking I’d get home early and help my family prepare dinner.  I ended up arriving exactly when I would get there if I hadn’t left early because of an accident on the main highway to my home.

No lies I hate traffic.  I even took off my work shoes while stopped on I-35 and fished some flip-flops out of the backseat.  I had that much time and inclination to get home and be comfortable.

I also had enough time to come to a realization.  If I sit in congested traffic to get home, it is more infuriating than taking the side streets, which may be longer but keep me moving. 

Thus, why the hell am I putting myself in congested traffic when all I need is to take the long way on the side streets?

Upon arriving home grumpy and tired, I knew my decision to stop graduate school was made.

At this point, I don’t know if it will be a permanent or temporary hiatus.  I don’t know if I will stay in librarianship, even though it is dear to my heart.  I don’t know if I’ll return to UNT.

Decisions, decisions…

…for another day.