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.