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...

Statistics

Note: This is a small selection of material I have found in researching Non-Hodgkins Lymphoma and all my sources are cited at the bottom.

Statistics and notations, specifically causal or relational ones, for Non-Hodgkins Lymphoma are not lengthy or descriptive. The information scientist in me is not satisfied with this information, so I’ve been doing some digging.

According to Frederick Hagemeister, M.D., professor in the Department of Lymphoma and Myeloma, in MD Anderson’s Fall 2010 Network newsletter:

“We’re not yet sure, but we suspect that some forms of lymphoma may have a genetic disposition, not in terms of inheriting the disease, but perhaps in inheriting a type of immune deficiency, for example. Other possible causes include environmental factors, such as exposure to pesticides and herbicides, and certain viruses, although these causes are rare.”1

I already understand that in order for cancer to occur, you need just one mutated cell to duplicate and the domino effect lets loose.

My doctor and general collective cancer intelligence all say not to prioritize time in discovering what causes cancer. In my professional life, I enjoy finding out answers for patrons and customers. What would make my own situation any different?

Non-Hodgkins Lymphoma is a fairly common type of cancer in the United States. According to the Leukemia and Lymphoma Society, Non-Hodgkins Lymphoma is the seventh most common type of cancer.

For patients with Hodgkins Lymphoma, the number of incidences in adults between the ages of 20-34 and those above the age of 65 are higher than for the adults between the ages of 35 and 64.

However, for patients with Non-Hodgkins Lymphoma (like me), the rise of incidence appears almost exponential with age. From 2003-2007, for adults between the ages of 25 and 29, there were 330,000 cases of Non-Hogkins Lymphoma, which is a small percentage compared to the millions of cases for adults ages 75 and older. 2

According to MD Anderson:

“Over 66,000 adults and children will be diagnosed with non-Hodgkin's lymphoma this year. Over 95% of those cases will be adults around 60 years of age. Men have a slightly higher risk than women, although the numbers of women being diagnosed with non-Hodgkin's lymphoma has recently been increasing. Non-Hodgkin's lymphoma is more common in whites than African Americans or Asian Americans.”3

Part of me looks as this information and thinks I must be in a very small percentage of incidences. I would be in the 5% of adults not around 60 years of age. I am female, though while the numbers are increasing, women tend to have a lower risk than males. I am technically 5/8 white, with the remainder of my ethnic background as Asian and Native American, populations that have a lower risk of developing Non-Hodgkins Lymphoma.

As an interesting family history side note, there are no known cases of cancer on my father’s side of the family. On my mother’s side of the family, there are incidences of cancer, but it’s not prevalent.

I refuse to blame something authentic or arbitrary as the reason I have cancer. However, if I have a genetic predisposition to getting cancer or have an immune system deficiency, I want to know how this will affect my future. If, in fact this was caused by environmental factors, what are they? Are there people like me who could use this information as prevention?

I know that much research exists in discovering the causes behind Lymphoma, especially Non-Hodgkins Lymphoma. I know I won’t be able to add anything extraordinary to this research. For my own information curiosity, I’m collecting all the puzzle pieces in my own medical and personal history.

There is a small amount of paranoia I feel: will this come back after all the treatments are complete? If it is a genetic disposition, can I pass this onto my children (assuming I can even have children after all this)?

I can’t shake off the concept that my future has irrevocably been altered. However, I don’t want to look at it like a bad thing. I look at it as an opportunity to get more tools to keep living the life I want. I might or might not be a statistic, but I truly believe things happen for a reason. With all the sad and terrible things that happen in our daily lives, this seems like a futile belief. I think that sometimes you have to find the proverbial light at the end of the tunnel. Sometimes you have to make your own sunshine.

If you surround yourself with positive thoughts and wonderful people, what could go wrong?

1 MD Anderson Fall 2010 Focus on Non-Hodgkins Lymphoma
2 The Leukemia & Lymphoma Society Facts 2010-2011
3 MD Anderson Non-Hodgkins Lymphoma Patient Information