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...

Cancer zen

Chemo creates bouts of uncertainty, but there are times when there is clarity, even in their singular moments.

There are times when I feel like I should be telling people: I’m fine, now save yourself. Somehow I feel like a ghost that has drifted into the background. This is by no means because of how people treat me, it’s just how the cancer makes me feel reflective.

There are days when I don’t feel well and I am motivated to move forward for the pure sake of finding inner peace. I liken it to standing on one foot and trying to stay balanced. Sometimes you have to focus on a spot on a wall just to stay upright. I try to work through the discomfort just to find that spot within my mind.

There are days when it feels like I’m freefalling backwards and I don’t know if the feeling will stop. I don’t know if something will catch my fall or if I’ll just get the breath knocked out of me when I land.

Maybe those bouts of uncertainty?

Today at my oncology center, they were holding a Cancer Survivor’s Day. I received a goodie bag with a t-shirt, some candies, and a Livestrong rubber bracelet. They also provided food and refreshments.

I recall they hung posters and signs in the chemo room and lab advertising the day, but honestly, I had forgotten until the day had arrived. I was merely showing up for a blood test. It was like a real party, complete with people who knew each other and had connected in the past. These were people who were on a first name basis with the doctors and nurses.

I felt so out of place.

While everyone at the oncology center knows me and knows about me, my age differentiates me from many of the patients.

I breeze into the hospital for my appointments, still in my work clothes, walking faster than most of the healthy people in the hallways. If it weren’t for the bare head or head wrap, you probably couldn’t tell that I was a cancer patient at first glance.

Today at the little event, I noticed that I was not just years, but decades, younger than my peers. It’s a contradictory feeling, seeing people older than middle age and elderly battle cancer. There’s a bit of a stigma that cancer happens to the elderly more than other age groups. Perhaps this is true statistically. However, it doesn’t make it any easier to watch someone older than me go through cancer. I’m sure the same could be said for the reverse.

Like the woman sitting next to me at the event today noshing on food. She was probably the first stranger who wanted to know my cancer situation and understood about the treatments. When I was leaving, she held my hand for a moment and said: “you stay strong sweetie.” It felt so odd, someone who is probably a grandmother, saying that to me.

One of the nurse technicians pinned a yellow ribbon on my sweater and gave me a couple of yellow roses.

I left the hospital with the roses in my bag, feeling a bit like a rejected prom date, ever aware and uncertain about my situation.

The thing I didn’t understand about the term “cancer survivor” before having cancer is that it is used even while someone is in treatment. The idea is that the moment you are diagnosed, you are surviving cancer.

A giant portion of the uncertainty is the midpoint PET scan, which has come and gone. I should find out the results later this week. I’m nervous and anxious about the fate of the monster in my lung.

Next week is also yet another chemo. Part of me thinks: didn’t I just do chemo? Maybe the last rounds of treatment will seem faster. In a blink, summer will be over.

Meanwhile, there is more time to work on my cancer zen.

Happenstance

I very much believe that things happen for a reason.

However, if I were to say that there is truth and understanding in this bout of cancer shenanigans, I’d be kidding myself.

I don’t know why it happened.

What am I truly expecting out of my life? I don’t think I have too many preconceived notions about where it will take me. I’ve always been very academically mindful, but I never had this checklist for things I should accomplish. I mean, there have been the “it would nice” and the “I’d like to” moments. However, I knew early on I didn’t need that hanging over my head.

Maybe this has been my saving grace. Honestly, thus far, my life has been exceptional. People I care about, who care back, surround me. I’ve traveled to other countries. I completed a college degree in something that drove my artistic vision and I’m working on another. I was born into the most wonderful family possible.

I doubt I’d recommend other people get cancer, as if it were this free-floating amorphous disease you could just inhale accidentally. Then again, wait until researchers discover the causes behind lymphoma and I could be eating this statement.

I have the desire and drive to move beyond this, despite the marks it has left on me both literally and intellectually. I suppose I’ve finally discovered that as much I look forward, I need to work on my situation now.

Thus begins a new beginning to my spiritual journey. Sitting there in the chemo room, I allowed my body to just rest and sleep. Before, I’d squirmed and just hated being there and feeling awful. I have found a new resolve. Part of it is because I don’t think I have much of a choice. My doctor thinks the mass should be gone by now. I was surprised to hear this news. My initial thought was: why the hell are we doing more treatments?

Apparently, the other 4 treatments are to ensure the cancer doesn’t come back. The bad cells could potentially be floating around my body still. Part of me is encouraged, but also discouraged by this news.

I found a punching bag in my sister’s old closet and I’ve pulled it out to not only work out my upper arm strength, but to get my aggression out. I now take a walk twice a day on my days off and in the evenings on workdays.

I’m determined to keep myself strong as I go forth into the treatments that will make me weak.

I could philosophize all day, but perhaps this is why all this has happened: to get my mind, body, and spirit to become a singular entity.

Or at least to let me hit a punching bag with zeal.

The fishbowl

I was suspicious that I had been feeling so great after my third chemo and held my breath for the week following the treatment. Like clockwork, I began to feel awful. I’ve dubbed this the 6th day, 6-day slump. It seems to be around the 6th day post treatment, the chemo rollercoaster has finished its climb and is ready for the drop.

I would like to think this drop could be considered thrilling, but really it could be placed in the “I’d rather face-plant into concrete” category. As an added bonus, it lasts more than a few days.

There is a bright side, thankfully, and it is that the week following this hellish slump gets better. I get to feel less nauseated, with fewer headaches, and my muscles will not have a revolution.

While I wait for this slump to pass and for the brighter days to come into view, I have much time to ponder simple things, such as:

How come I can fall asleep in a warm bath, but am wide-awake within warm blankets?

Or, what will make me less nauseous: corn flakes with milk or toast with butter?

Still, the vague irony is that the nicest days seem to be the ones where I am committed inside.

This North Texas spring has been the mildest I can remember and beckons us to come outdoors. My outdoor excitement these past few days has been getting the mail and absorbing as much Vitamin D as I can, before I regret walking outside in my pajamas in full view of the neighbors.

As of late, my body in full Revolutionary mode, complete with its own Boston Tea Party, and dumping contents into the sea (let me not get more explicit than this).

I am either a glutton for punishment, or there is truly nothing on television, because I watch Food Network even during these times. Trip to the toilet and then: Oh! Cupcake Wars is on! How does someone make 1,000 cupcakes in 2 hours?

I am saddened that my existence has been homogenized by generic questions such as the above. I reflect upon a time when I was working two jobs and going to school. I recall reading school material with zeal. Now, the same zeal has been applied to maintaining hydrated and a preoccupation with blood cell counts and body temperature.

For some reason, I still like to cook when I feel awful, even if I don’t eat the food. For example, today, the war continues and I still found satisfaction in creaming together butter and sugar.

Perhaps all these things are a way to bide my time before the upcoming 4th chemo treatment and the tests that will follow to see my progress.

Part of me is anxious to see how much the mass has reduced at the halfway point and the outlook for the duration of my summer.

Thus, distractions and revolutions ensue.

Orange pound cake, anyone?

This is your brain on chemo

In 1998, there was a memorable Public Service Announcement for a Drug-Free America starring Rachael Leigh Cook in which she smashed her way around a kitchen with a frying pan demonstrating how drugs affects lives. I doubt the line “any questions?” has ever been said with such memorable authority.

No doubt there were dozens of PSAs that I’ve managed to remember over the years, some of which still have influenced me.

Note: if you lived in California in the early 90s, you will recall a water shortage due to severe drought conditions. There were days when you were to “shower with a friend,” which believe it or not wasn’t an effort created by the porn industry. There was also the PSA in which a little kid is brushing his teeth and leaving the water faucet on while doing so. The camera cuts to a fish in the ocean, with the ocean water level going further and further down before cutting back to the kid who is still carelessly letting the water faucet go while brushing his teeth.

This PSA created a harbor of water conservation paranoia in me since then.

Recalling PSA comparisons of splattered fried eggs to drug-addled brains, I cannot help but see a connection to my own current state.

It is a mildly humorous thought that chemicals and narcotics are drained and fed into my body under the guise of shrinking a lung mass and killing off mutated cells.

Aren’t these the things that people would do recreationally that we’ve been told our entire lives not to do?

In completing research about the side effects of chemotherapy, there is one phenomenon called “chemo fog,” which also includes a few other terms including “chemo brain.” Essentially, there is a lack of mental clarity when undergoing chemo, which includes short-term memory loss, difficulty in remembering details, lack of multi-tasking skills, feeling disorganized, forgetting words, and just “spacing out” (see this link for other fun facts).

The scarier part about this phenomenon is that doctors do not understand why this occurs.

Let’s review.

We are not surprised that hitting one’s head in an accident could possibly cause cognitive impairment or irreversible damage to the brain. However, it’s unknown why there is a lack of lucidity after pumping a human with toxic chemicals that are killing off cells, including healthy good ones?

Perhaps in my own chemo fog, I find this concept ludicrous: a big fat “duh”.

So, have I experienced any of the effects of “chemo fog”? The answer is a resounding yes. Or, let’s just say, if there were a time for blonde jokes, this would be it.

I feel like myself but off.

Not remembering the day of the week? I blame it on chemo fog, not sheer laziness.

Writing things down in my day planner because appointments come into my head, don’t process fully, and then float back out? I call it a good habit for a brain that doesn’t want to hold as much anymore.

Going downstairs for something, then forgetting what it was, going back upstairs, remembering, and then going downstairs again? Chemo fog AND exercise.

According to The Chemotherapy Survival Guide by Judith McKay and Tamera Schacher, a theory is that “chemotherapy can cause direct toxic injury to brain cells.” This book is an interesting resource and even includes a chapter with a section devoted to chemo fog. While it’s not a comforting topic, it’s a positive step that researchers are devoting time to finding ways to prevent cognitive impairment due to chemotherapy.

So, remember kids, don’t do drugs (unless the doctors specifically instruct you to do so). Many cells within our bodies reproduce, but brain cells are the highfaluting bastards that just want to keep to themselves, not reproduce, die alone, and leave you cognitively stranded.

If Rachael Leigh Cook was doing a PSA for “chemo fog,” she’d thrash around the kitchen with a frying pan, but she’d then misplace the pan and forget what she was doing.

This is your brain on chemo.

What was I supposed to do Friday again…?

Postscript: You might be wondering how I can write all these blogs without sounding like a Neanderthal. Since I’m a library student who writes research papers, I’m a stickler for good prose. With my own “chemo fog,” I review my writing multiple times to ensure that what I say makes sense and is structured in an orderly manner. I even complete them first in MS Word, then copy and paste the words into a blog posting. Admittedly, there are times when I publish one, I’ll review it and find flaws. Call me a perfectionist, but this is how I function.