Roulette

I am sitting on the concrete floor of the hotel balcony overlooking the ass crack of a grocery distribution center.  It has multitudes of 18-wheelers lined up like toys.  There are palm trees swaying in the gentle 85-degree weather.

I am in Houston and it is in the middle of November.

From my hotel view, to the right, downtown Houston doesn’t seem that imposing.  Trailing my glance over to the left, however, I see all things medical. 

I had just spent the early part of the afternoon with my mom in the cancer maze called MD Anderson.  When I entered the facility, I nearly broke down in tears because I was so overwhelmed.  A very nice volunteer, sensing our horror and confusion, led my mother and I to the radiation portion of the hospital, which could have very well been a quarter mile walk.  I remember mumbling something to this effect: my oncology center is about 5 people and 3 rooms.  No one blinked an eye in my direction; I looked like everyone else.  I realized that I was indeed part of a large society of cancer patients.

I could relate blow by blow what transpired those few days, but let’s say there was much "think about serious things" idle time between the numerous discussions between my mom and I and our family, the doctors in Houston, and my doctors in Denton.

My situation is a bit unique.  First, according to the doctor at MD Anderson, if I had been diagnosed with lymphoma at their hospital, I would have completed 6 cycles of chemo and then undergone radiation.  Radiation would have always been part of my treatment plan.  However, I had completed 6 cycles of radiation, done a surgical biopsy that was negative, and then completed an additional 2 cycles of chemo.  My doctor thought that with a negative biopsy result and the additional cycles of chemo, I would be in the clear.

Not so, apparently.

The original size of my mass was nearly 11 cm on its largest side.  The division between a “bulky” mass and a “non-bulky” mass is 10 cm.  Essentially, in the academic-oriented world of cancer, I had a bulky mass.  This means that I’m at a higher risk for relapse without a secondary form of treatment. 

The radiation oncologist I saw at MD Anderson presented my case to a tumor board, which consisted of 5 doctors of various backgrounds (oncologists, radiation specialists, and lymphoma experts).  They voted as follows: 4 for radiation, 1 against.  While my oncologist in Denton was on the fence of additional treatment, the radiation oncologist presented him with some compelling information on why radiation would be necessary.

Thus is the breakdown: if I don’t do radiation, I could be at risk for a relapse.  Since the form of cancer I had was aggressive, it could bloom very quickly and my options of treatment might be limited or the dreaded stem-cell transplant would be necessary.

Now, here is the “this-shit-got-real” information: by doing radiation, I could risk heart damage, thyroid damage, and even breast cancer all later down the line.

You can imagine my panic when having both scenarios dumped into my lap.  Sort of the classic “damned if you do, damned if you don’t” kind of situation.  All the doctors agreed that the issue was controversial and a tough call.

I kept feeling like I was getting piled with more and more information, but without the resources to help make a decision.

Frankly, I don’t remember much about November because of sorting through all the details.  I’m not sure the fact that I’m an infomaniac and good at research eased or abetted my paranoia.  I do remember sitting down to Thanksgiving dinner with my family telling them I was grateful we have had the grace and the humor to deal with this crazy year as a family, that I’m lucky to have wonderful people in my life who love me as much as I love them.

The evidence all pointed to the fact that I should do radiation and finally I agreed.  At some point, I emerged from my fog of paranoia and had an epiphany.  Cancer is a condition much in the same way diabetes or asthma is a condition.  Basically, I will have to do what the doctors say and monitor and take care of myself for the rest of my life.    

The doctors say I should begin having mammograms starting at the age of 30 to prevent breast cancer. 

Ok, I will have a yearly professional breast squishing.

I was told that at MD Anderson there is a cardiologist who has research interest in people who have had radiation to the chest and how it affects the heart.  I was recommended to perhaps do a follow up with that doctor yearly to check the health of my heart. 

Ok, yearly pilgrimage to Houston to follow up with the radiation oncologist and perhaps to visit with this cardiologist.

Whenever blood is drawn for my regular monthly labs for the next 2 years, my thyroid will be checked.  If it looks irregular, I will have medication prescribed to me.

Ok, medication to control my thyroid.

This is all very doable stuff.  If you compact it all, it becomes extremely scary and menacing.  Once I begin stretching it out and looking at the individual pieces, I begin to realize that it is all part of a process.  This is the process of my life and will continue to be the process of my life.  I’m tough enough to defeat anything before it becomes a problem.  So, in terms of tenacity in survival, I’m not concerned.

Now, it’s a matter of playing the game smart. 

To be continued...

Take two

Sometimes the opportunity to take a road trip presents itself.  However, in my case, it’s one of those decisions that saying “no” is not an option.

As it turns out, my doctor dropped a mini landmine into my lap today during my monthly oncology visit.  I had arrived at the hospital assuming the normal things: some bloodwork, a little chitchat with the doctor, and a port flush.  Before I know it, I’d be back home to eat some lunch and change for work.

Little did I realize that the “chitchat” would involve my doctor telling me that my case had been in the hands of both practicing doctors and research ones post chemo treatments.  As it turns out, the possibility of doing radiation is still very much in the air.  Except I’m a statistic now and the doctors are split completely down the middle on the next step. 

Thus enters the road trip proposition: my oncologist wants to send me to MD Anderson to do some tests and talk with a panel of doctors to discuss if radiation is necessary.  He wants one of the largest cancer centers in the U.S. to be the tiebreaker. 

I cannot help but feel like both a sporting event and a science experiment.

I’m glad that the doctor is taking all the right precautions and I’m lucky to have his connections to MD Anderson.

However, this does little to quell the paranoia about what will happen right before the holidays and into the New Year.  As if my work, social life, and school situations make any sense at this point.

I see myself streamlining my life a bit.  I will not spill my guts here because I do not know the outcome yet.

Stay tuned…

You left me speechless.

The proverbial hamster on the wheel has been sabotaging my brain and cognitive abilities.  Some days it has narcolepsy and falls off the wheel entirely, leaving me in a lurch mid-sentence, allowing me to hem and haw and…what was I saying again?

I’d like to create a flow chart describing my newfound thought process, but I’ve decided it would have about as much “flow” as tossing confetti on paper.

In many ways, it feels like I have thrown a ceramic plate on the floor and I’m scrambling to pick up the pieces each time I try to construct a thought.  In the past, the connections to my thoughts were a bit obtuse.  Now, it’s a rollercoaster at break-neck speed for me to keep up with myself.  Added to this hellacious ride is the uncertainty if I am communicating correctly or at all. 

I have this fear that one day I will get a CT scan or MRI of my brain and it will look like Swiss cheese.

There is nothing like post-cancer paranoia to add cheer to one’s day.

Did I mention the frustration?

The transition from working part time and living in the doctor’s office at least 3 times a week has been replaced with my return to the library, in conjunction with my bookselling gig, and living in my car.

I am beginning to feel like an international woman of mystery.  My car is in the shop getting the dents, caused by hail and someone backing into me, finally repaired.  Thus, for the past week or so, I’ve been jetting around in a red Mitsubishi Gallant rental, with an assortment of my life’s possessions thrown in the passenger seat and back seats for good measure. 

I feel like I’m living out of a suitcase and surviving on coffee.  I feel like I’m living someone else’s life.

When I explain my post-cancer situation to people, I begin to feel more and more pathetic.  I am distracting myself from my reality, trying to prevent thoughts of cancer relapse and uncertainty from eating me alive. 

In some instances, the words “sad” and “lonely” have been thrown in my direction, which makes me nauseous and on the verge of tears.

Don’t get me wrong, I am utterly grateful that I have had tremendous support during my cancer crisis and that I’m returning to a former sense of normalcy. 

However, even at my doctor’s office, my little routine over the past 6 months has disappeared into seemingly sporadic appointments of blood tests and PET scans.  I feel unceremoniously dumped into the real world again, which is a bit of a shock after all the handholding that has transpired. 

I suppose the focus from “fight cancer” to “do whatever you want” goes from quite narrow to extremely broad and I can barely catch my breath on the changes that have occurred within this past year.

Sure the trick could be to keep breathing as I strive to find my inner Zen.  Easier said than done.

I’m still processing it all and it will take some time to sort it all out.

States of reform

The slump is over and the neuropathy is slowing disappearing. I’m elated to find my body responding better to activity. I’m enjoying the feeling of strength, both physically and mentally.

Part of me wants to run full speed ahead and not look back, but the other part reminds me that it is a process and a transition, that patience is required.

It’s a shock to most people when I explain that while I’m finished with treatments, I’m not technically in the cancer-clear. It’s not that I want to be fatalistic about it at all, it is just reality. I will still have the port in my body for at least another year. I still have to go to the doctor routinely for blood work and PET scans. What is positive, however, is that these appointments are more staggered in the proceeding months. According to my oncologist, after about 2 years of negative tests, I can typically say I’m officially cancer-free. Then again, nothing is overly typical about cancer.

I realize going forth that it’s all a series of markers and anniversaries. It’s a bit of a grim thought process, but it’s a set of reminders of what has transpired and what my life will look like beyond today.

This past week I have been trying to get acquainted with a new natural looking wig. I wore it while grocery shopping and at work. I thought perhaps it would help me in the post-treatment process. I will be utterly honest: it looks good but I hate wearing it. It hangs limply on a hook on the towel rack like road kill. Every morning when I groggily stumble to the sink to wash my face, I see it and always do a double take.

I don’t look bad with my shaved head at all, but it’s still a reminder of a body wrought with havoc. I’m afraid of scaring children when I return to work at the library. Now that it’s finally growing in, people assume I did it on purpose. If I get a wary look, I usually just smile brightly. Kill them with kindness, right?

Some of the chemo and steroid-induced “puffiness” is leaving my body. However, I am sad to inform that my attempt to fit into my lovely yellow dirndl for Oktoberfest was met with me making a face in the mirror because of its corset-like tightness. It’s supposed to be roomier to fit in food and drink! Alas, it will not be making an appearance. Scheisse. This girl likes to breathe now and again.

The days have been coasting by quickly and not a moment passes when I am grateful that it is only going to get better from this point forth.

No day has gotten me down because I keep reflecting on these thoughts: I pummeled cancer into submission. I am an army of me sans mutated cells. And I have the scars to prove it.

The Final Countdown

Last chemo completed? Check.



Taking post-chemo steroids? Check and aggravating me.



Neupogen shots to aid in white blood cell production? Begins tomorrow.



Post-slump neuropathy? Will occur a few days after the slump.



The post-chemo charade is ridiculous and annoying all at once. However, I’ve become so accustomed to it, I could probably predict the following: the exact count of my white blood cells depending on the time of day, when my steroid-induced acid reflux will occur, and when I will begin to hurt all over in the slump, to the hour, later in the week.



I have this “grin and bear it” attitude firmly in place this time around, mostly because the uncertainty of all this is gone, and I’m ready to just be done with it.



No lie that cancer sucks.



However, I’ve learned some random things about post-chemo treatment that I will share:



1. Coffee makes my steroid-addled self sleepy. Go figure.



2. The cute little final bag of chemo drugs is bright red and makes my face and chest turn the same color for a few days. It looks as though I have a heat rash. This is after I’ve peed orange soda color for 24 hours. Most attractive.



3. Prednisone, the precious steroid I have to take, causes my stomach to have acid reflux. I take acid reflux medication, which makes my stomach upset. It also makes me alternately tired and wired. Vicious cycle.



4. There are approximately 500-750 lymph nodes in your body, depending on the individual. During the post-chemo slump, they all decide to swell and have a riot. This also makes me want to sleep a full day to make up for the sleep I didn’t get while on the steroid. Most damning.



5. When the slump is over and the neuropathy has kicked in, I wear tight hospital socks to bed so I can’t feel the tingling in my toes. I have officially become a grandma.



6. When the neuropathy is finally over and I’m aware that I can feel my phalanges again, I kiss the floor because I’m so grateful it is all over.



There was a point when I would add “until next time,” but there is so much relief that this is not something I get to say this time around.



The weary smile has been replaced with the blissful smile.

Everybody got their something

Thus far in my cancer journey, I’ve been reading Eastern philosophy. I think the spiritual concepts based in Buddhism always resound with me. There is a fair amount of overlap between Eastern and Western ideas of spirituality. I think it’s safe to say, regardless of belief system and culture, we are all generally working on internal issues.



Perhaps it’s easier to utilize spirituality when there isn’t much else there as a distraction. For example, in my hospital stays, in between the visits with family and friends, I found myself with a lot of thinking time. This kind of time used to petrify me. I think as a society we are always afraid of looking into the faces of our demons. Stranded in a hospital or in my bed, aching and exhausted, my vulnerability would remain at the whims of these demons.



During these times, my demons are more nebulous than consistent. Usually they crop up now and then and taunt me: “Feeling pain, aren’t you? You want to feel sorry for yourself, right? How come you got cancer so young? You are weak and useless,” and on and on.



Some days I would be convinced my demons were right, but this has been during my worst days. More than likely I would acknowledge the taunts and respond: “Yeah, I feel pain, so what? It will be over soon. No, I don’t feel sorry for myself. I don’t know why I got cancer at all, but it doesn’t matter right now. I’m not weak; I’m actually quite strong. I might be somewhat unproductive now, but just you wait,” and so forth.



This has taken considerable practice. Backed into the corner with these demons, I realize on some level, I have no choice but fight back if I want to survive these taunts. At first, it felt like I had little tools to complete the task. It seems that it could sway in the extremes. I could scream and yell and go ape shit on my demons or I could just stare it down and wait until it backs away.



The Buddhist philosophies I’ve read would probably go with the latter approach. Partially, and this is my interpretation, because using a lot of energy to fight something that is so strong will just make one more exhausted. If there is one important condition to consider while fighting cancer it is this: energy must be conserved. If I’m fighting these demons, I have to fight smart. Why hand over so much energy to something that is not helpful?



I’ve been contemplating the idea that perhaps some might construe cancer as greater than other problems. In my situation, the diagnosis was shocking and the treatments unbearable at times. However, the disclaimer is that, if this weren’t cancer, I could very well be fighting something else. We are all battling personal demons. Cancer, in a way, represents something we all deal with on a day-to-day basis: our current state. Whether it is our jobs, relationships, fears, or desires, we are all dealing with something.



It would be easy to say that cancer is the demon itself, but I’m not convinced. Cancer generates a considerable amount of fear and doubt. Therefore, the fear and doubt are the demons. Believe me, I have wasted energy on the fear and uncertainty surrounding my situation. I have by no means perfected a nonreactive state to my demons, but I am working more on my approach to them.



Now, I’ll just smile politely at my demons as acknowledgment, let them exhaust themselves in trying to scare me, and scoot them out the door.

The beginning of the end is the beginning.

It’s been a few days since I finally received the results of my biopsy.



Negative. Nada. Zip. Zilch. Zero.



The surgeon said he took a good sample and my oncologist joked that there might not be much left in there. According to the results, all that is left is dead tissue.



To say I struggled with the idea of a stem cell transplant would be a large disservice to my feelings prior to the biopsy. There was a moment in the days leading to the surgery that I settled myself into a peaceful state and simply said “no”. This was not going to be my fate. For once, I felt like I had a choice in the matter. Of course, this is a shocking revelation, having felt more like a machine than a human lately. The feeling of getting dragged around was becoming very old, very quickly.



There were times in the past few months when I felt like I was in the middle of an action movie. The kind where there is no plot, but ample budget. The kind where I’m convinced the director is thinking: what else is there to do but blow shit up?



My own sense of body and self was becoming fragments in the collateral damage of treatments and procedures.



After a few days of hydrocodone-induced sleep after the biopsy, I stopped taking the painkillers. This inevitably made me cranky for the few days following this decision. However, my body has been healing quickly. I’m still removing bandage residue around the wounds that were once covered with butterfly bandages. Tugging that sticky crap off my body is in some ways more painful than the healing biopsy holes.



Prior to the biopsy, all things considered, I was feeling pretty good. My lungs aren’t quite at the capacity they had been since before the surgery. However in the past few days, my chest no longer feels like it’s going to explode just going up the stairs. The feeling of being shot has been replaced with a dull ache that tends to occur most when I roll over on my side while sleeping or, oddly, when I sneeze. Then again, these are small potatoes to having a tube in your side, in my humble opinion.



The past week, while recovering from surgery, I had been giddy about random things. I was cooking, knitting, reading, writing, and meditating. All like a hurricane: finding the eye, finding my sense of calm. Savoring those moments in gratitude.



Even my own attitude had changed within the week. Things that didn’t quite make sense before are now making sense to me. Recognizing the moments when I need to push myself and the moments when I need to let myself rest both physically and mentally.



While I had a minor amount of duress realizing I’d have to go through yet another chemo on Friday, with another one scheduled in early September, I hold onto the feelings of recovery post-biopsy. Feeling myself emerge from the cancer fog and the struggle to find normalcy beginning to cease. The blood test right before my chemo confirmed this as well. Within a few weeks of the delayed chemo, even after surgery, my white and red blood cells were all on the better side of normal. It startled me to know my body was rebounding so quickly.



There is a part of me that desperately wants to ask: how soon is now? However, I have to keep in mind, in the push and pull, there is balance. In chaos, there is order. In cancer, there is peace.

Mimo

Note: This is about my cat and not scary medical stuff. Let's call it a small reprieve.





My cat has decided that as an alternative to his flesh biting tendencies to get me out of bed that he has now moved his focus to my nightstand. If face batting and nose biting only makes me turn over and pull a sheet over my head to avoid him, he will start swiping things off my nightstand. I’ll turn over to see him with his backside facing me, peering over his shoulder as he paws a pen, and when he thinks I’m ignoring him again: swipe.



By the end of the morning, pens, medication, journal, eyeglasses, and cell phone will inevitably make it to the floor. Each time, of course, I react: “Mimo!” and he proceeds happily, grateful there are so many things on the nightstand to throw around. I try to get out of bed and open the door to let him out before he knocks over a glass of water or the lamp, but on some occasions he succeeds.



I have a few books that were resting on the floor with slightly waterlogged covers. My parents’ bedroom is right below mine and I’m sure they think I’ve fallen out of bed when the lamp hits the floor. Now, they know better, with my mischievous cat.



I am convinced he has learned these newfound skills from the other family cats. When he was living in my apartment and holding down the fort when I went to work or did errands, nary an item would be out of place upon my return. I was convinced I could leave something like a whole roast chicken out on top of my microwave and he wouldn’t notice. Once, I left a bag of dry cat food on my kitchen table, and later, I found the pellets all over my floor and the bag with telltale teeth marks. However, this was the extent of his mischievous nature and I knew to keep his dry food away from view.



I recall him wanting to sleep close to me in my apartment, but these days he keeps his distance by sleeping on my desk or at the end of the bed. He is all too happy if I don’t bug him. Come morning, however, all bets are off as he climbs over my torso and settles down on my stomach and chest, facing me. It’s as if he is saying: “See, mama? I will know when you are getting up. Oh yes, please rub my head while you are staring at me quizzically” and offers his head to me. Sometimes he steps on my port on the right side of my chest, which is always tender, or the left part of my chest, where the mass (Death Star?) lives. After uttering an “ouch” or two, ultimately, it is me holding him down so that he settles or pushing him off my chest.



I have always had a cat around that was preoccupied with getting fed. If a cat didn’t bug me for food, I would be concerned that something was wrong with him or her. However, Mimo’s concern with my schedule is a bit off-kilter. It’s plausible, in my mind, that he is a herding cat. Promptly around 9 at night, he hangs around me a bit more than in the earlier hours in the day. He waits for me to head upstairs so he can follow me and begin his sleeping ritual of bouncing between my desk and bed.



This cycle has only changed slightly post surgery. I told him prior to the surgery that he couldn’t step on me, especially with surgical bandages, bruising, and healing stitches. His blue eyes looked at me intently as if nodding. When I came home from the hospital, he was elated to see me, since I had been gone 2 days. He was bounding down the stairs and came to a screeching halt when our other cat Noki, a black female stray that I had adopted while in college, was waiting by the door.



My two “children” do not get along at all. In fact, Noki had presided over me while I was recovering from my gallbladder surgery a few years ago. As an example, when our elderly family cat Tiny Tim accidentally stepped on my stomach to hang out with me and I cried out in pain, Noki rushed into the room, scooted the old cat out and then went about her business. After eating or grooming, she would protectively sleep by my side to ensure this would not happen again. Even now, she takes her familial duties seriously.



Though now, Mimo has claimed me and it’s obviously just pissing her off. She does not hesitate to scream at him whenever he passes by and he gives this pitiful look like: what did I do? If you say “Mimo” to Noki while she is resting, she will lift her head up quickly and her eyes will narrow as she is looking around her. It seems that 5 months of living together has not helped their friendship. I suspect in the winter she’ll come around in order to warm herself in his alpaca-like fur.



Mimo is a fairly mellow cat despite his idiosyncrasies. One of the best reasons to have him around is that is fully supportive of my hobbies and activities. Working on the computer at my desk? He will sleep next to my laptop or sometimes even type for me (type is a relative term). Knitting? He will be there to catch a stray piece of yarn as needed (well, it's stray to him). This past weekend I dug out my jeweler’s saw frame and metal files to saw out and modify a piece of acrylic. I was sawing out a piece to replace the broken face of a vintage Michelin Bakelite tire pressure gauge for my dad and Mimo was there to be quality control (the photo evidence is above).



We might not always have the best understanding of each other, but he has been a good companion thus far.

Biopsy

Warning: for those with squeamish stomachs, you might not want to read this blog posting.

You know it’s a great start to surgery when the surgical RN jokes that there is an Asian connection: he’s Filipino, the anesthesiologist is Chinese, and the surgeon is Vietnamese. I point out that I’m a ¼ Japanese and he smiles and says: the circle is completed.

At this point, I’m wearing a purple paper gown that has me curious. It has kangaroo pockets and a hole to clearly connect something. My mom, sister, and I are shivering in the pre-op room, waiting for me to be wheeled away. Another nurse comes in and asks: are you cold? I’m sure my teeth are chattering when I nod yes. She connects a tube from the wall into the hole of my gown (a-ha!) and warm air begins to fill the area between the plastic touching the gown and me. She hands me a controller and I can adjust the temperature. I look like the Michelin man, but at least I’m warm.

Never did I think that there was such a cool tool for pre-op. In a weird way, feeling cozy in the surgical cave is comforting as well. My mother and sister are still freezing at this point, though bravely grinning through the cold.

I am wheeled into the surgical room and they are playing the radio. In the past, I recall getting prepped for falling asleep. Someone would tell me to begin counting backwards or an oxygen mask would be placed over my face. Nothing like that happened.

All I remember is waking up surrounded by 2 nurses. One was removing what sounded like a “heart line” out of my right wrist and I noticed that they had removed my hospital bracelets and put them on my left wrist. She was removing tape and telling me that this was the worst part of this. I had no idea what she was talking about and just let her finish. She begins putting on stockings on my legs and I’m a bit disoriented at what is happening. Another nurse at my left is asking me if I feel pain and I nod yes fervently. It feels like I have been shot in my chest. He says he is giving me some morphine and I lay in a daze as they are monitoring all my vitals. A little bit later, the nurse asks: "would you like some more morphine?" I say: “please, it still hurts” and grimace. Even later still, yet another shot of morphine and the pain is only beginning to fade.

The same nurse who administered the morphine is telling me that I’m doing great and I hear a moan coming from the other side of the ward. My skin prickles and I begin to think the only reason why I’m doing so great is because I’m not screaming my head off.

I am wheeled to my hospital room where a couple of nurses help move me to the bed and I’m very aware of the flames of pain on the left side of my body. They wrap my stocking legs separately with a contraption that begins to vibrate up and down my legs. I beginning to emerge from my morphine-induced haze and assume that the machine prevents blood clots. A nurse tells me to press a button when I have to use the restroom so I can be unstrapped.

I’m writhing in discomfort and I begin to compare this to my gallbladder surgery. It’s about the same pain-wise, but this one is more uncomfortable because of the location. Also, I was a relatively healthy person when I had my gallbladder removed. This time, I’m a cancer patient trying to find out the next mode of treatment. It seems so much more pathetic.

Trying to make myself comfortable on the bed so I can fall asleep is a bit like trying to fit on a jelly bean: ridiculous and not going to happen. I squeeze myself to the right side because I have slightly more leverage. My mom and sister arrange my things so I can reach them and I hear them whisper “I love you” and “we’ll be back later” as I nod into sleep.

I’m woken up a few times for food and a nurse taking my vitals. I ask for some more pain medication and pick at my food. My throat is so dry and it hurts to swallow. I drink the iced tea and spoon some mashed potatoes into my mouth, trying to get some food in my stomach.

A nurse asks to look at my drainage tube and I turn slightly to the right as she decides that it needs to be emptied. She takes a cup and squeezes the contents into it. She’s measuring the stuff while I am recoiling from the sloshing noises it had made.

It’s not until I use the restroom, when I have to ask a nurse to remove the straps and I stand bare-assed, trying to modestly hold the ties in the back of my hospital gown with my right hand and the little drainage pouch with my left hand.

I examine myself in the mirror in the bathroom and I’m surprised at all the bandages around my left breast. I see the drainage tube sticking out of me and connecting to the pouch I had rested on the sink. I recall making a face and just shuffling back to the bed, pressing the button that calls the nurse so he can strap me back in.

The blinds are closed and I can only tell what time it is based on the bit of light filtering in the sides. My family comes to visit in the evening. After they leave: more pain, more vitals, more food, different nurses, and the time just passes. I sometimes put my headphones on to muffle the consistent sound of the machine at my legs, which is much like a giant cat purring.

By morning, I’m wheeled down to have another chest x-ray. By the time I’m back, the surgeon’s assistant comes in and she looks at my bandages. She removes the drainage tube, which literally had been the pain in my side apparently. After warning me that “this will feel odd” and sliding it out, I feel some relief. She says I will be released soon.

My mom comes and waits with me as we get the final papers and gather my things.

I have a hydrocodone-laced dream upon returning from the hospital that I am working for the FBI and get shot. Then I wake up and realize it is my chest that is hurting from where they took the biopsy.

It’s the end of the rollercoaster where I think: well, that wasn’t so bad.

However, a stronger thought comes to mind: let’s not do it again.

Phobias

I used to have this fear that my heart would give me troubles later in my life. I suppose this could be taken both literally and figuratively. In some ways, I find it a bit of a coincidence that the mass in my chest is near my heart. It always seems that somehow our true fears always rear their ugly heads when we try to run from them.

It’s like Murphy’s Law on crack.

This is not the case each and every time or for each and every person. In fact, before you panic, I would like to mention that in the face of lymphoma, according to my doctor, it is one big game of chance. Since the origins of lymphoma are mostly unknown, it appears that getting it is much like rolling dice. Some people have mutated cells that like to replicate, others do not and will not. However, in my own nuanced and attuned intuition, I feel like I should know better than to avoid my fears.

I recall in the months preceding my cancer diagnosis, I would rub at the area directly above my heart with uncertainty. There was a tenderness that seemed hard to distinguish between a muscle and an organ. Generally, I would commit to the former and ignore the discomfort before I began to forget why I was rubbing my chest in the first place.

I bring this all up because I have a small amount of worry going into the biopsy tomorrow. The feeling of wanting to be in control makes going under anesthesia a scary situation to me. Having done it more than a few times for surgeries and procedures, I’m well aware of that moment when you just slip under, dreamless and unaware of the people and instruments around you.

It’s always a creepy scene to play out in your head beforehand. The anticipation, while dressed in a hospital gown, already feeling vulnerable, and cold (since I have never known a hospital or surgical ward not to feel anything than refrigerator-worthy) is enough to make me uneasy. I struggle with preoccupying my mind with positive thoughts before these things, knowing that there will be a moment when I have to let go and succumb. Before that moment, I remember those I love and know I will see them again when I wake up.

Coming out of anesthesia is always an odd experience. I always recall the sounds first before I strain to open my eyes. Even in that groggy moment, I’m thankful to be aware of my surroundings once more. I feel a relish of joy and now process my thoughts to begin recovery and healing. There is also the feeling of: well, that wasn’t so bad.

I could liken it to riding a rollercoaster that you have never been on. You feel that anticipation as you wait in line, watching others on the ride. You climb aboard the ride and think: ok, I’m on here, no turning back. As you climb the top to go to an eventual drop you now think: why did I decide to go on this ride in the first place? This was a bad idea. Your stomach begins to rise towards your throat as you reach the top of the hill, expecting what is to happen next, but also not knowing exactly what will occur. That sincere moment of uncertainty is turned around the moment you hit the bottom of the hill, because you realize you made it and will continue onward.

The anticipation could easily go hand in hand with pessimistic thoughts that would ultimately lead to panic and fear.

Fear topped off with fear is a sundae I do not want to devour.

Time and time again, I know that I have accepted my circumstances and maintained a strong sense of self. Also, having a conversation with my doctor the other day and the nurses today at the hospital for pre-op tests has made me feel better about the procedure. Therefore, the worry is lessening.

To paraphrase and recontextualize FDR’s well-known inaugural address quote, the only thing for me to fear is fear itself.

Pink wig and other shenanigans

I learned something important this past weekend: never underestimate the power of a pink wig.

Three of my closest friends and I went out of town for the weekend to San Antonio. Packing the car and driving to Hill Country provided such a profound thrill for me for many reasons: the opportunity to get out of the house and see some different surroundings, aside from connecting more with my friends.

It’s amazing how on road trips, passing through cities and seeing long stretches of land makes one feel somewhat insignificant. It’s a reminder that there are things at work greater than oneself, because everyone is living day to day, experiencing the same traumas and triumphs as the next person.

It’s also a reminder that I’m not stuck here in this space, physically and figuratively.

I have a pink wig on loan from a friend and I decided it would accompany me to San Antonio. The plan was that we’d dress up and go out to eat for a belated birthday dinner for one of my friends on the Riverwalk.

Setting out on the streets of downtown, we were dressed in our cocktail hour finest.

San Antonio is already a colorful city with its profound Mexican heritage. However, little did I realize how much attention a pink wig would garner.

Interestingly, I rarely saw a scowl or weird look. For the most part, people would smile at me. In the instance of passing a double decker bus on the way back to the car, multiple people called out, “I like your hair!”

My favorite moment, however, would be the man surrounded by friends who said loudly: “Hey! She has pink hair!” That had the four of us in stitches.

In a small way, wearing the wig prevents me from feeling like a cancer patient. It stands out, but in a different way from when I wear a head wrap. I feel a bit like a comic book character with it, but I sincerely love the escapism of it.

Snapping back to this past Monday’s reality, I had my third PET scan. This was the one intended to determine the next route of treatments. I was slightly less anxious about these results than the previous scan, but wishing, hoping, and praying that the Deathstar would indeed be destroyed.

Even as I lay in the PET scan machine, I visualized the mass crumbling. My preoccupation with these thoughts made me want to bust out of the tube fighting. I tried my hardest not to squirm as my muscles began to twitch. I squeezed my eyes shut and envisioned my ultimate zen moment: paddling a canoe on a serene lake at sunrise. Imagining the precise and steady dips of the paddle made me less aware of my tickly skin.

On Wednesday, I called the doctor to follow up and find out the results of my PET scan.

Let me begin by saying that the results weren’t quite what I expected.

The scan was inconclusive and appeared to indicate little change from the previous scan. Of course, my mind began to reel at this point. What does this all mean?

My doctor requested a conversation in person with my family and I the next day, to discuss the results and what to do going forth.

Come today’s follow up appointment, it became apparent that the main concern is that the PET scan does not show a decrease in activity. The doctor said a surgical biopsy would be required to take a sample of the mass so that we could conclusively determine its identity. It’s possible it’s just scar tissue; it’s possible it is still cancerous.

If it’s just scar tissue, I will continue with 2 more sessions of chemotherapy. If it’s still cancerous, I will have 1 or 2 rounds of aggressive chemotherapy that will require a hospital stay and monitoring before extracting stem cells from my blood or bone marrow. In the conversation about the process of a stem cell transplant, the doctor brought up that I would need another port with multiple “lines” on the right side of my chest. Anxiety began the “la la la la la la, blah, blah, blah” thoughts in my head at that point. I’d rather cross that bridge if or when I come to it.

I was sent over to another part of Denton to visit with a cardiothoracic surgeon who could complete the biopsy. After examining the results of my 3 PET scans and calling my oncologist for more information, he decided that he needed a CT scan to help him in the surgical process.

Thus, I await a CT scan tomorrow or after the weekend. I have a biopsy scheduled on Wednesday next week, with a hospital stay of a few days for recovery.

There is a small victory that my chemo tomorrow has been postponed as we await the procedure and results.

To bastardize a quote from the movie Juno: I already have cancer, what other shenanigans can I get into?

Hot flashes for heat waves

The blistering hot days of Texas summer are in full swing and, in the afternoon, I stay inside wondering why the government doesn’t legally require siestas.

The persistent heat, with its requirement of minimal clothing and risk of sunburns, makes me all too aware that my body is mottled with the shadow dots of injections, blood tests, biopsies, and anemia-induced bruises. These are the days when I notice that my skin is so fair, that blue veins just appear in the weirdest of places. The small coincidence is that these veins do not appear on my arms where the blood tests occur. I recall telling the technician at the oncology center that I have a lot of veins in my feet. She just laughed and said: “I don’t want your feet!”

My face and neck are rouged from hot flashes just like a pre-menopausal woman. A glisten of sweat appears on my forehead and if my mother is near me, she asks: “You had another one, didn’t you?”

I suppose I could look at it like a welcome change to the “could-be-an-extra-in-a-post-apocalyptic-zombie-flick” look that comes with chemo-induced anemia.

Though people have been very nice to tell me that I don’t look sick.

Thank goodness for makeup?

Also associated with these hot flashes, my sleeping pattern is seemingly derived more so from hysteria than comfort, though it might be a combination of the two.

I have a large bed with 3 pillows. One pillow is for my head and there is a pillow on either side of me. I tend to roll over and hug one pillow to fall asleep. In the middle of the night, I will have a hot flash that will cause me to want to roll over and hug the other pillow because that side of the bed has the AC-cooled sheets.

At this point, the sweat and newly warm side requires me to roll back to the other side, where I attempt to start the sleeping process again. If I have indeed decided to stay asleep on my right side, I become uncomfortably aware of my port and then I have to maneuver the pillow between my arms and under my chin so that there is less constriction.

Better right?

Wait, there’s more.

Meanwhile, I am simultaneously kicking down the sheets and blankets because the layer of sweat on my body is gluing me to the mattress. At this point, I will flop over to my stomach or back (depending on where I began sleeping) in exasperation to let the overhead fan dry up the excess moisture.

And now I am cold. So, I pull the sheets and blankets back up over my head and begin the pillow rotation insanity all over again.

At some point, I will check my cell phone for the time and typically I’m elated to know that there are only a few more hours of this nonsense until I’m to get up at 4:40 am.

By the time my phone alarm wakes me, I’m not entirely sure I got any sleep at all. However, my cat is all too happy to prompt me out of bed, gently at first, and then firmly. By this, I mean that he tests nerve functioning by biting the closest human extremity to him. I can tell you with confidence, with these daily tests, that I do not have full-blown neuropathy.

I get up, glad that it’s not light out yet, but always surprised when locking the door to the house as I’m leaving for work, that it’s already too warm.

These days, I live vicariously through the air temperatures, my body temperatures, and levels of exposure to sunlight.

Autumn, my favorite season, cannot come soon enough.

Joie de vivre

I miss Paris. I miss France.

I am lucky enough to have been there three times. With each subsequent visit, it reaches farther and farther under my skin. I cannot help but recall different pieces of my travels at the strangest times.

In a fit of delirium this past spring, when it was raining nearly everyday, the wind would rage on outside. There seemed to be so much change and transition in the air.

I was reminded of the seaside at St. Malo. The autumnal sea air so strong when walking near the shore at night, I thought it’d lift me to the ocean.

I looked out to the limitless void of night sky and ocean, humbled by the overwhelming black churning mass. My senses heightened by the cacophony of crashing waves and straining gusts.

Settled into bed, the pressure of the wind buckling the windows facing the ocean seemed to say: let me in, let me in.

I managed to find a rhythm in the fury those nights and fall asleep.

Sometimes dreamless, sometimes not.

The first time I visited France was when I was 16 for only a few days. My dad was working for an English company at the time and we were visiting London. As it turned out, my aunt was going to be in Paris and it seemed a shame to be so close and not to see her and the city. So, we took the Eurostar through the Chunnel. It was so strange to be transported magically to another continent in mere hours. As a frame of reference, the shortest stretch out of the state of Texas for me is to the north, but otherwise it takes at least 4 hours of drive time to be in the larger cities outside of the DFW metroplex.

We had a memorable rainy Thanksgiving eating croque monsiers with Oranginas in a café.

The second time when I was 23, I was in Paris for over a week, spending time with family and also meandering around the city by myself. The third time was this past October when I had the pleasure of touring Normandy, Brittany, and parts of the Loire Valley, aside from Paris, with family.

I just saw the new Woody Allen movie, Midnight in Paris, and this is partially why these memories return.

The movie made me feel a bit nostalgic, like when Owen Wilson exits the Shakespeare and Co. bookstore that I know from memory is just across from Notre Dame because I have been there each visit to Paris.

I am also reading David McCullough’s new book, The Greater Journey: Americans in Paris. It is about Americans going to Paris from the 1830s to the 1930s seeking knowledge and inspiration.

While processing book returns at work on Sunday, I was listening to NPR and they happened to replay an interview with McCullough. He mentioned that he used specific Americans as examples in his books based on how easily he could get access to their journals. The journals are residing stateside in numerous libraries and museums. It seems magical to know that these once-blank books accompanied the travelers across the ocean and returned with them, filled with thoughts, observations, and witticisms. Thus far in my reading, he quotes liberally from these journals.

Perhaps I am feeling a bit of cabin fever because I’m ready to be in a regular routine that does not involve doctors, chemotherapies, and uncertainty about my treatments.

I try my hardest to live for today, but in the back of my mind, I keep thinking: what will happen next? Knowing that there are things at work greater than myself keeps me going.

Imagining far-off places away from here lifts my spirits. These are the places I will envision during my 6th chemo at the end of this week.

The end of the marathon is finally coming into view.

Elephant in the corner

My sanity is precarious on the days when the rollercoaster is headed downwards. It’s an odd mixture of extreme lucidity and visions. My awareness of particular things has become heightened or enhanced, depending on the day or situation. Is it the chemo? Is it myself coming to terms with my true nature? I haven’t decided yet.

For example, driving home from work early the other day, I was overcome with feeling nauseated, exhausted, and tender all over my body. I had these visions of all my ancestors lining the highways I traveled. There were thousands of them. They didn’t say things and I couldn’t pick any of them out in recognition, but I had the reassuring feeling that they weren’t disappointed in me. It was as if each of them persevered and lived their lives so that they could have more kin, like me.

It was an overwhelmingly loving situation, like a group of celestial blood-related cheerleaders.

And no, I did not crash my car.

Sometimes it feels like I have bonds around my wrists. No matter how elastic and forgiving they feel, they are still there. There are days when I almost forget that I have cancer, just in how I feel and in my attitude. A look in the mirror or at my day planner, and I’m transported back to reality. It’s easy to feel frustrated, much like a kid in the backseat of a car during a road trip.

Are we there yet? Aren’t we friggin’ there yet?

I’ve already envisioned myself breaking out of the bonds and in a way I’m a bit nervous. I’d liken it to coming out of prison, going on parole, and trying to assimilate back into society.

I already get odd looks now because of the way I appear to people. Once I’m fully acclimated, will I have to explain myself? As it is, my personal chronology can be delineated into BC: Before Cancer, and AC: After Cancer. Will cancer be the elephant in my corner?

In attempts to reconcile my apathy during this slump with a more positive outlook, I’ve resorted to wearing a rubber band around my wrist. I found out via Crazy Sexy Cancer Tips by Kris Carr that rubber bands are used in cognitive behavior modification for people grappling with addiction, depression, and other ailments and disorders. The idea is that once a negative thought or need for something negative arises, you snap the rubber band on your wrist so that it triggers a little jolt to your brain with its accompanying pain. It’s important to note that severe pain is not the goal here. The goal is to send an impulse to the brain to self-correct your thoughts and behaviors. It also makes you more cognitively aware of your urges and pulls you back to the present.

Thus far, I’ve noticed that it has helped me in the days when I’m feeling quite down and sorry for myself. I’ve also noticed how little I use it on some days, which makes me feel secure about my own attitudes during this journey. Some days I won’t wear it because I know I won't be self-defeating. However, during the slump days this past week, I found myself snapping at it more than a few times during an hour’s period.

At this point, you might have an image of me sitting in a corner with an elephant snapping away at a rubber band like a mad woman surrounded by celestial beings.

You might not be far from the truth.

However, if there is one thing I’ve learned about cancer is that you just fall in line with its cadence. You just let it make you feel what you need to feel.

Luke, please destroy my Death Star

It’s been over a week since I got my results for my midpoint PET scan.

As you may recall from a previous blog posting, my doctor thought the mass would be gone by now. The truth is that the mass is not gone, but it is half its original size. As my doctor mentioned: this is by no means bad news. It’s still progress and it appears that it has not spread, which is also good news.

The battle plan has changed a bit in light of this news. Rather than just continue with 4 more chemotherapies, I’ll be going forth with 2 more and then have another PET scan.

I have yet to see the photos of a PET scan but have been given the reports in written form, along with verbal descriptions. In order for the scan to work, the body must have a lower level of glucose than normal, hence the 6 hour fast prior to the procedure. Then, radioactive glucose is administered, in my case via an injection. Any tumors and masses seek the glucose and absorb it. After a 45-minute nap in a dark room, you are put in what looks like a tightly closed MRI machine. This is not a joy for the claustrophobic. I’m mildly claustrophobic and the first time in the tube, I had to convince myself that I was in a water tube ride so I didn’t hyperventilate. Staying in there 45 minutes to an hour, while strapped in so you don’t accidentally roll off the “bed,” presents more of an opportunity to nap. The PET scan machine takes incremental pictures of the body, which for me is from my thighs to the base of my skull. In order to interpret the results, the doctors are looking for not only the size of the cancer but also the density of color. The “brighter” it appears, the more activity it contains.

In my case, the cancer has shrunk and is less bright than before. I could almost liken it to a dying star in my chest, which is pretty much the outcome we want.

However, if the PET scan after the 2 chemos still shows activity, a stem cell transplant might be necessary. This would require a trip to MD Anderson in Houston, most likely, and more bone marrow taken in order to harvest my stem cells. Apparently, having a stem cell transplant allows the body to handle more aggressive chemotherapies by administering them back into my body post-chemo to rejuvenate my cells. I forgot that for other cancers, blood transfusions are used, but in the case of leukemia and lymphoma, since they are blood cancers, this is not an option.

In the last weeks, I feel like I have been floating through the days, some of it has been cancer paranoia; some of it is just plain weakness. I can feel my brain not working as well as it once did (chemo fog?). I made this analogy to some of my coworkers: you know how you can open multiple windows on a computer and have them all run at once? Well, my brain can only open and operate one window at a time these days.

I am also beginning to look more the part of a cancer patient: I have dark circles under my eyes and a more sickly pallor. I am trying hard to stay active and eat good things, but there is only so much I can do to prevent these symptoms.

This has presented some challenges between how my soul and body feels. It’s a weird situation because for the days when my body is beyond exhausted, my soul has to convince my body to just rest and fall asleep. For the days when I feel broken beyond depression, my body convinces my soul: really, I’m not doing that badly, so cheer up.

I know for some cancer patients, depending on their situation, they name their cancer. I really hadn’t devoted much creativity and time to creating a cancer alias. I think for some of the days, I just referred to my cancer as the “little monster”. In the face of pop culture creativity, I think I shall refer to my cancer as my Death Star.

It’s entirely appropriate because it’s the bad guy. It is suspended in space, as my cancer is suspended in a space. It’s round and my cancer is roundish. Most importantly, we all know the ending of A New Hope so really it has a more positive connotation.

Now, where is Luke Skywalker when you need him?

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.

Phantom effect

Anxiety is such a fickle animal and it creeps up on you in the weirdest of ways. I remember in college when I had my first panic attack. I thought I was going to die. My body started tingling and I became completely numb while my heart was racing and I began to see stars. It was closing in fast and I had no idea what was happening.

I’m not feeling that kind of stress-induced anxiety these days, but I have been counting down the days until my next chemo, the one that should be halfway through my treatment cycles. The one where I’ll have a base for subsequent treatments by having another PET scan.

I have pretty much acknowledged that I have cancer and I’m getting treatments. I’m glad to be over the shock of it. Sometimes I forget that I’m in the throes of cancer survivorship, except when I see my port scar as I’m dressing, or having to go to yet another appointment to check my blood or have a follow-up with the doctor.

I haven’t worn a wig yet and prefer to wrap my bare head in scarves, which sometimes garners me odd looks. I must look like either a hippie or someone who has spent many years in tropical climates. With the white polka dot on black scarf I wear often, I look like I could fit in at a Hutterite colony. Ethnic confusion aside, I rather like the look and just appreciate the warmth and protection of the scarves from the air conditioning and sun.

I have known people with amputations that have mentioned the phantom effect of their removed limbs. They say it feels like the limb has never left, which could be the result of the remaining nerves giving that sensation. I have discovered the same with my hair. With the wind moving through, or rather over, my hair, I remember when my hair was long and it would be pushed streaming across my face. The last few days with the storms and the winds, I find myself unconsciously pushing my non-existent hair away from my face. In an odd way, it’s like it never left.

I have been appreciating my return to work more each day, even though I can’t be around many people. It’s a welcome feeling to be part of something bigger than the nuances of my treatments. The fact that I miss working with people and books makes me feel secure about my decision to attend graduate school in library science. I miss working in a library setting and relish when I can return.

Thus far I have a somewhat normal routine. I wake up around 4:30 am to a cat patiently waiting for me to feed him. By patient, I mean, he steps on my chest and bites my nose to make sure I’m fully awake to pay attention to him. I make green juice and go about my morning until I leave for work at 5:30 am. When there are no clouds, I get to see the beginnings of the sunrise.

I surprise people when I tell them I’m a morning person. Really, if I had the option, I’d rather work earlier in the day than later. I’d become habitually confused by the time of day as a retail manager because my shifts would change daily or weekly. One day in the week I could be at work at 6:00 am, another day, I wouldn’t be home until after midnight. My poor body, with its innate biological rituals, would remain confused. I would do the cruel thing of depriving myself of sleep, loading my body with caffeine, and then expect myself to complete schoolwork late at night despite experiencing the two previous things. Naturally, fatigue would set in and I would still push through it. I’m grateful I am now forced to be more in tune with my body. Having a consistent work schedule has helped me get my body into a more natural rhythm.

I’m amazed at all the things within my body and in my environment that are at work all the time. I’ll cut myself accidentally and slowly the cut will heal. It’s reassuring to see my body fixing itself. I take this to heart as I approach my 4th chemo.

Despite all the anxiety about the treatments, I have to remember that my body will heal itself even after the damage has been done.

The cancer phantoms will soon disappear.

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?

Call it a road, call it a journey...

I’m in a bit of denial about my treatments. I am not so much reeling from my third chemo treatment as running away from the idealism of it. I’m already tired of thinking of myself as unhealthy. This obviously has its challenges because I have to consider my surroundings in all my decisions in order to ensure my current and future health. With that said, however, I’m struck by how much not giving into the idea of cancer has helped me lately.

This might not be a method that works for everyone. It occurs to me that we each deal with a strife, whether biological or not, in our daily lives. Perhaps this is my strife. This is not a disease that will inhibit me, it is just part of me. I won’t grow accustomed to it, but I will respect it for what it is.

I’m nauseated at the thought of what is put into my body to dissolve this mass hiding out in my left lung. Talking about it makes a hole in my stomach and leaves me speechless. I dry heave almost unconsciously because the experience of chemo is just awful. There is nothing positive about it, but hope. When I sit in that room with a maximum of 5 other people, we are all waiting for our individual treatments to commence and finish. We all look at each other silently, acknowledging this truly strange quest we have each been given.

When the treatment is over, we sling our proverbial packs over our shoulders, and continue on with our day.

In theory, denial is the beginning to the cycle of grief. I have already experienced different sides of it in what has felt like the longest near 2 months, including anger and depression.

Maybe there is no grief in this scenario.

I question myself, as if perhaps I’m not feeling what I should be feeling. Had I already reached acceptance and now I’m going backwards?

Is there a right way to feel about cancer or any life-threatening illness, disease, or event?

It feels like it has been handed to me unceremoniously. I’m not receiving a scroll or an order with a ribbon around it; I’m receiving a crumpled remnant of scrap paper. What could I possibly glean from this?

In not getting caught up with cancer, I’ve settled into the very cozy feeling of love. Not necessarily romantic love, though, that is there too. Just the cushion of caring people: it’s nourishing and affirming. It’s very encouraging how the idea of love is both simplistic and complex. It’s in actions and in words. It’s in knowing glances and in smiles. Allowing myself to be enveloped in this feeling and sharing it is incredibly rewarding.

I’ve only told a few people, but mortality has been the absolute last thought on my mind since my diagnosis. Even I second guess myself, thinking that should be the first and initial waking thought in my head, but it’s not and nor will it be.

I just keep thinking about the next day and how it will get better, because it has no choice.

I refuse to let it be anything else but a better day.

Little hairs everywhere

Some celebrate Cinco de Mayo by drinking margaritas; I apparently celebrate by shaving my head.

I think at some point in our life, each of us would like to shave our head. Maybe in frustration for a haircut gone bad, with thoughts of starting over. Or perhaps we are inspired by Sinead O’Connor or for a more contemporary example, Britney Spears.

Regardless, in the past, I know I have been curious about what it would feel like to have a bald head and if I had the guts to go through with it.

Little did I realize that my opportunity would be quickly approaching.

It began with my doctor teasing me because I hadn’t lost my hair and that I would perhaps make it on his abbreviated Hall of Fame since he had only one former patient who never lost his hair.

It has been nearly 6 weeks since my first chemo treatment. Generally, it takes 16-30 days post the first chemo treatment for hair to begin falling out. I passed that milestone without so much as natural shedding of my hair, nothing unusual. I’d shrug my shoulders and tell family, friends, and coworkers: “yeah, it’s weird, I still haven’t lost my hair.”

It wasn’t until about over a week ago when my hair began to shed a bit more than usual.

Soon, I was setting a washcloth over the drain after taking a bath for fear that the myriad of lost hairs would create a hairball in the pipes that even Drano couldn’t dissolve.

I’d nervously begin to feel my scalp tingling and run my fingers through my hair to find more than a few hairs caught between my fingertips.

I began to find hairs on the bathroom floor, on my pillowcase, on the seats of my car, and of course, all over myself. There is only so much dignity you can maintain in public when fishing out stray hairs caught in your bra.

There is something oddly cathartic about cutting off all of your own hair. In this scenario, I had my mom help me buzz my hair short. I have some small bald patches, but generally I look like a Tibetan monk or someone going into Boot Camp. I’m lucky that my head isn’t misshapen or has visible craters or birthmarks.

I miss my hair a bit. I miss running my fingers through my hair and rubbing my scalp to release stress. Now my hair feels like Velcro. It makes a weird noise against my pillow as I sleep, like sandpaper to wood.

I’m a bit nervous about going in public with a bald head and a headwrap. Even though I have some wigs, including a pink one on loan from a friend. Before I remained somewhat anonymous because people couldn’t necessarily tell that I was sick. Now, the visual cue of missing hair will no doubt alienate me from strangers.

But no matter, I will rock the bald.

Chlorophyll vs. Cancer

Photo: Mimo trying to steal some cucumber skins during my juicing operation.

The last few weeks have been green. Green thumb and green juice. I’ve entered the forays of green living. And we all know what Kermit says.

Prior to finding out I had cancer, I had picked up Kris Carr’s Crazy Sexy Diet, a book that gives kudos to drinking copious amounts of green juice and having a mostly alkaline diet. It was my initial plan to begin adhering to a stricter diet in order to feel better. Part of me thinks that perhaps I knew something was wrong prior to my diagnosis.

Even though my doctors told me before beginning chemo treatments that I wouldn’t have to change my diet, I knew better.

With large amounts of chemicals entering my body, releasing large amounts of toxins, I understood that a certain amount of detoxification had to occur.

I had already attempted to cut out caffeine beginning last autumn. Coffee was like a spiteful, but charming, ex that kept tempting me back. I would break my ritual of non-coffee drinking with an excuse to keep myself awake, but immediately regret it with a pounding headache and racing heart.

It was like experiencing my week of coffee withdrawal in one guilt-laden sip.

Since my hospital stay, I’ve stuck with herbal tea, and the occasional green tea, if I want a beverage choice outside of juice and water.

The only time I am around coffee now is when I use the grounds (from the local Starbucks) for my new compost pile.

In finding a project that preoccupies my time and attention, I’ve turned to gardening. So far, it’s been nothing overly fancy, as I had limited knowledge on keeping plants alive with previous attempts. However, with research from both online sources and library books, I’ve become a lot more informed on keeping plants happy and healthy. Currently in my container garden there are some flowers, given to me from friends in the hospital. There are 7 herbs: lavender, basil, boxwood basil, cilantro, lemon mint, sweet mint, and parsley. I also found a Roma tomato plant already producing fruit. Days later, I went to a Dallas nursery and picked up a satsuma tree.

I think I have an addiction. A few more plants or trees and I could quite possibly become Crazy Plant Lady.

Since I cook quite a bit with fresh vegetables, the compost bin is filled with cooking scraps. The hope is that the compost will be ready in the late summer or fall when I’m ready to begin planting for the spring. I’ve ordered a catalog from the Seed Savers Exchange to pick out some heirloom varieties to grow this year into the next. I would like to grow some of the things that go into the green juice that I now consume first thing in the morning. It’s a mixture of cucumber, kale, broccoli, apple, and ginger, and frankly tastes green.

Nothing like swirling emerald green juice in a mason jar and taking it with you to work to scare people.

Then again, it’s the ultimate showdown: chlorophyll vs. cancer.

I hedge my bets on the green stuff.

The cancer card

I don’t think anything quite prepares someone to hear the word “cancer” dropped into normal conversation. This is especially true for conversations involving someone you know. It’s as if someone has turned off the music and turned on the lights. Everything that appeared glamorous suddenly seems cold, distant, and isolating.

Depending on the party involved, there isn’t always a good way to vocalize your feelings because you are just stunned. It’s easy to think in panic: cancer doesn’t happen to someone I know, it happens to other people.

It all becomes very real, very quick.

Now on the other side of it, I notice how even in my own speech patterns, I can’t always bring myself to say “cancer”. It’s interesting to see how many euphemisms can be substituted for the word. Further, sometimes I feel like a jackass if I flit around the truth. Sometimes I feel like a jackass when I have to use “cancer” as an explanation.

I have noticed that there is a certain amount of grace necessary to navigate cancer as a term.

Cancer is a loaded word. It’s an identity. It contains memories and flashbacks, thoughts and feelings. It’s an association and a description. In day-to-day vocabulary, we all know it has a negative connotation.

When I’ve used the word, the variety of reactions hardly astounds me. Sometimes it’s greeted with hopeful grimaces. Sometimes pity. Sometimes, brushed off and not even acknowledged, like I’ve just informed the person that I have a paper cut: “oh, that’s too bad”.

Each of us deals with the cancer bomb a different way, but when it goes off, it smells like fear and dread.

It’s sad that as a society, because of what it represents, cancer is an explanation of its own. As I’ve been navigating issues related to working, school, and finances, using the cancer card has had its benefits. In a small way, it’s nice that the majority of people understand, and they don’t require me to explain why I feel a certain way a certain time of day.

By no means do I want to use the cancer card to make other people feel bad or to get my way (see the jackass comments above), but there are times when it’s the only description that is adequate.

As in, I’m not trying to be a pain in the ass: I have cancer.

When I go to my oncologist, I see other patients and it’s amazing to me that you can tell who has been touched or traumatized by cancer. Sure, there are visual cues, like missing hair, but it’s in their eyes.

It’s remarkable how they don’t look sad, just resigned to what is happening, at peace about their progress, and hopeful about their fate.

Rarely do I see anger and it’s the compassion I feel from other patients that gets me choked up. It makes me want to be stronger for not only myself, but my cancer peers as well.

No one wants to sign up for cancer voluntarily. But, perhaps holding onto the cancer card isn’t so negative and awful as we perceive.

Food and music

Nausea and sour stomach are normal side effects of chemo, but there are some interesting things I’ve noticed about my own eating habits in the recent weeks.

For starters, one moment, something will sound delicious and the next, absolutely disgusting. It changes day to day and the rigmarole could even include my favorite foods.

My taste buds are shot; though a dietician told me that sour generally will taste the same for people, so sucking on lemons before eating a meal will help someone maintain a “normal” palate.

I’m probably not stretching the truth by saying that food and psychology go hand in hand. Why is it watching a commercial on bacon will be tempting to a carnivore and horrifying to a vegetarian? There are moments when the food becomes art and psychology in commercials.

For example, in one heavily mass-produced commercial stereotype, a chocolate chip cookie is broken apart in a close-up oh-so-gently to exploit the gooeyness of the chocolate chips and is given by a mom to her children.

Oh! I get it. Mom made those cookies for her kids. The happy kids are ingesting chocolate chip cookies that are gooey. Since they are happy, gooey cookies must be good. That particular brand’s gooey cookies must be good. And then I want one. And so forth.

My cravings are hardly as direct these days, but I have noticed an interesting phenomenon.

I’m one of those people that attach memories to music (like most people) and if I made a compilation years ago and suddenly put the CD in my car, I’ll remember the exact order of the songs. I refuse to listen to certain songs if the memories are depressing.

Today, I was listening to The Beach Boys, on a lark, because 1) I’m on a Mad Men kick and therefore music from the 60s, 2) The Beach Boys, despite their issues with depravity, have such infectious music, and 3) I’m looking forward to summer.

Here is the weird part: I’m listening to the music and I’m reminded of my childhood in California. Yes, I was a bit of a California kid stereotype: a cute blonde kid with a light golden tan and permanent windburn. While we didn’t live close to the ocean, it was only a few hours away. I then begin associating California with things that did not necessarily occur in my childhood or adulthood visits to the state, for that matter (perhaps all those Sonic commercials?):

Warm sunshine, rollerskating on the boardwalk, milkshakes, grilling on the beach, happy people, sparkly water, the smell of ocean air, sand between the toes, running and splashing into the water with clothes on and shoes off…I’m transported to a happy place.

And here’s the shocking part: I’m hungry. I suddenly begin craving milkshakes and burgers.

Whiskey tango foxtrot?!

For the duration of the morning, I had hardly eaten a thing, pushing some mashed potatoes around in a bowl and consuming a glass of soy milk just so I could take some damn pill and now I’m hungry after listening to The Beach Boys?

I’m blown away at the psychology of it.

Is it because of the association I made between the music and food? Is it the commercialization of food and how its psychology affects our choices?

Further, how the heck can a cancer patient who had no appetite suddenly make a 180 and become hungry after listening to songs that have memories, pseudo and real, attached to them?

I’ll leave that for everyone to ponder.

As they say with the priceless and ageless Tootsie Pop commercial: the world may never know.

Break it down

I definitely have my good days and my bad days. After the first treatment, I began to understand how it ebbs and flows. There are a lot of euphemisms that can be attached the feelings.

It’s like surfing.

Or it’s like being on a rollercoaster.

Or it’s like a storm with sparkly clean days to follow.

The days right after chemo aren’t so bad. The days following those days: lots of fatigue, sleeping, and soreness from the antibody shots. Then the depression sets in. It’s not necessarily depression manufactured within the recesses of my own hormones and chemicals. It feels different from the “bummed out” days. I have to remind myself that chemo makes you depressed. My mantra for those days? It’s the meds, it’s not you.

Or, as we have begun saying in my family: fuck the meds, I just want a happy day.

The plan is to cross-stitch this onto a pillow or something. Perhaps, I’ll make a t-shirts and be one of a few that understands its meaning.

To a certain extent, I was lonely when working full time and completing graduate classes, because I was always busy. I had no social life. I had moved away from some of my friends and it became harder to call them up or join in activities at the last minute. I would be excited to have an outing at a restaurant because it would be outside the norm.

Now, it’s a different kind of lonely: the kind of lonely where I’m forced to think about things that I wanted to avoid. For example, I’m a patient person with other people, but with myself, I’m my own worst critic. Being left to my own devices is a bit devastating because I feel so unproductive.

It’s hard because I want to put on a brave face for the people I care about. I want them to feel the success of my treatment as much as I do. But I also want to protect them from seeing me at my worst or when I’m down. This is probably the most difficult aspect of the cancer process, I’ve discovered. I like to think I’m a compassionate person and perhaps someone who puts other people before me. This situation has taken that away from me and forced me to take care of myself. I wonder why I have ignored this for so long.

I had a reaction to the first drug in my 2nd chemo treatment on Friday. The Rituxan helps antibodies and the nurse began to increase the rate that it was going into my body since my vitals were looking good. I began to have chills and started shaking. My mother, staying with me the entire duration of this chemo, began to look alarmed. The nurse and doctor were keeping a close watch on me and just stopped the IV to let my body recover. They covered me with blankets and I just sat there and shook for a while, though I couldn’t tell you for how long. My mom said my face went sheet white, blue veins began to appear in my face, and my lips began to turn bluish. Apparently, this was the reaction they were trying to avoid in the hospital during the first treatment. After my chills and subsequent fever subsided, the treatment continued.

I had a small amount of sadness to realize that I was the first person at the oncology center to arrive and the last one to leave.

For the rest of the day, my stomach felt sour and my taste buds were off (as usual), but I was reeling more from the realization of what just happened. In retrospect, it’s unnerving because of the psychology of the things they put into my body for the sake of killing off the mass. It affects my thoughts and I think that requires more recovery time than the actuality of the stuff inside of me.

Then again, it’s the meds, it’s not me.

So, in jumping off the depression train, I’m trying to create a list of happy thoughts in my head for the times when I feel down. I’m learning to meditate and center myself through all the fog and anxiety.

I would also like to start a little garden in the backyard. Just so I have something to work on and have the opportunity to watch something grow. Maybe it will placate some of my own dark thoughts and create something positive.

A reminder to myself: there are better days ahead.

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.