Life Lately

I can officially say I am more than half way through radiation treatment. My lack of writing is a testament to things running  smoothly and minimum emotional breakdowns. Treatment has finally fallen into a routine beginning with my 6:00 am “dad alarm clock”. Hello high school. Then we hop into the car and I nap while he listens to anything but radio baseball (it’s not on that early, sorry about your luck dad).

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(Me in treatment with my pink mask)

We usually get there early and I am in and out of treatment by 8:40 am. Somedays we stay longer to meet with the doctor or the integrative wellness team but for the most part we are home by 10:30 am with our whole day ahead of us. Dad spends most of his day gardening, helping me with things, or playing on his tablet.  I stay busy running, reading, puzzling, coloring, or doing yoga. Part of me feels like I have regressed out of adulthood, but I think both of us are grateful, me for the sense of protection, and him for the sense of control.

As far as symptoms go…

Just when I thought my though little hair follicles would defy the odds and give a big “FU” to cancer they let go. I don’t blame them but the aftermath is a baseball (not golfball) sized bald spot on the back of my head. Please spare me the “it will grow back” comments I am reserving my right to bitch. I am 28 and while I’d like to think I am above the superficial importance of cosmetics in the face of cancer, I am not. I love my hair, every last follicle and I wish it did not have to go. Also, I wish it didn’t have to keep going every time after I shower. With that said, it is not lost on me that if this is the largest inconvenience in my life, all things considered, I am beyond grateful.  Fatigue comes and goes in waves and I can usually fight it with a run or a walk, my incision is healing very well, and even my light sensitivity has started to fade.

The hardest part of the healing is the 15-20 minutes before bed I spend with my thoughts. The time of the day where I remember I have cancer and ponder my mortality. I try to create some algorithm in my mind of the facts of my case. I fill up each side of the scale with my unique risk and protective factors as if right there in my bed I can come to the conclusion of my fate if I just think hard enough. I cannot and my worries are not helpful, but I am learning to accept them as part of the healing process.

How I am coping…

  1. Reading cancer memoirs- I am not always in the mood and sometimes these books trigger fear but they are helping provide me with a vocabulary for my feelings. They normalize suffering as a part of life and remind me to look for beauty despite despair. I would recommend “When Breath Becomes Air” and “Everything Happens for a Reason and All the Other Lies I Loved” to anyone going through a challenging time or caring for someone in a challenging time.
  2. Journaling and blogging- writing helps me unpack my thoughts so I know longer need to carry the heavy load alone.
  3. Running and yoga- physical activity helps me remember how healthy and strong I am and allows me to use all my bottled up energy in a healthy way.  I am so grateful for my physical health amongst the emotional turmoil.
  4.  Talking to family and friends- Sometimes it is a distraction from my thoughts and sometimes it is another place to unload.
  5. Crying- Over the years I have learned to become comfortable with crying although it’s usually alone in my car or with a select few people that know me well. I am learning to get more comfortable crying in front of strangers, therapists, and doctors without feeling ashamed or weak. It is a process but I am growing and getting better.
  6. *Spending time with family and friends living 🙂

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(Jeff and I at the New River State Park for MDW).

 

What’s ahead…

I have two and half more weeks of treatment and then I am hoping to get back to my normal life in Richmond. I am currently waiting on genetic tests and a DNA sequence of my tumor but for the most part the rest of my appointments will be follow up scans.   Most importantly I get to go back to living my life and trying to savor every moment.

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Attitude Problems

It was 12:03 a.m. and an animal was making the sound of a crying baby outside my window. I was wondering if I could hear it because of my newly adjusted over-sensitive ears or because it was obnoxiously loud. Either way, I was entirely too awake for having to be up at 6:00 a.m. for treatment. I’ve been proud of myself for ditching my unhealthy relationship with coffee but it wasn’t helping . I don’t remember falling asleep but I remember waking up in the dark. I was able to sleep a little on the ride into Baltimore because thankfully no baseball plays on the radio at 6:30 am.

When my dad and I got to the treatment center, we knew something was wrong.  The valet driver didn’t have our name on the schedule (yes there are valet drivers at the treatment center). We sat down in the waiting room filled with patients dressed in gowns. Some of them were accompanied by family members and some were alone. On good days, the room is humbling and empathy reminds me that as bad as I have it someone always has it worse. For example, the guy who comes two times a day to get his throat radiated and says every food he eats tastes like salt.  I’m not sure whether the double radiation or the inability to taste food is worse. The room began to fill with patients, which means the machine was down again. Four out of six days I have been in treatment a component of the machine (that sounds like it belongs in a Star Wars movie)  the “cyclotron” has broken down.

I was overtired and I had a hair appointment in the afternoon . I desperately wanted to get the hair appointment in before the radiation left a bald spot on the back of my head. I really did not want the sympathy from the hair stylist or the looks from the other women at the salon.  Not to mention, the high end products could irritate my raw skin.

When the tech came to tell us we read the schedule wrong and I was actually scheduled for 4:30 p.m. that afternoon, it was more than I could handle. Earlier, my dad and I were told that treatment would be at 5:00 p.m. for two days and then it would transition to 8:00 a.m. for the duration of treatment. I took that as fact and I did not bother to look closely at the schedule to realize the second week did in fact have differing times. I irrationally argued with the tech that we had been told 8:00 a.m. from the start and the schedule (which I left at home) said the same.  It did not. In my defense, the times did not match their new schedule either.  Regardless, I was in the wrong.  I knew I was acting ugly, I knew the staff did not have any control whether the machine broke down or not, and I knew there was a large room full of other patient’s fighting similar battles with better things to do too.

I still couldn’t stop my shoulders from getting tense or my eyes from tearing up each time a new staff member came to console me. Despite my mistake, they said they would do their best to fit us in and they did. Three hours later they took me in for treatment. The poor tech was still trying to get on my good side as he walked me to the treatment room. He kindly reminded me he was not an engineer and the machine breaking was not his fault. He proceeded to tell me it was hard for all the techs to manage so many upset patients. Of course, he was right but it only made me feel like a bigger piece of shit. What he didn’t understand was I was already upset with myself  for the way I was acting. I hated my inability to control the small tears drops falling from my eyes. Once they locked the mask over my face the tears streamed out in full swing. No one can see spiderman’s face right? I was upset this treatment was bringing out the worst in me and I was too overtired to do anything about it. I was mad that all these techs my age were composed, kind, and working hard, while I was a tearful mess.

I wanted to be the helper not the one being helped.

Luckily I had my dad there who was able to laugh and joke with the staff while I sat arms crossed with a tearful stank-face on. Naturally in the moment I was annoyed but deep down I was grateful he was helping the staff have a better day and bring ease to the situation.

When I was first diagnosed I promised myself I would never be resentful for my circumstance. I refused to ask God “why me”?  My life has been filled with too much love and privilege. I promised myself that what I have been given will always be more than enough. Getting upset at having cancer felt like a betrayal to all my clients who may never get to experience the amount of love and joy I have in my 28 years. Today taught me that I can do my best to control the resentful thoughts, I can watch my words when talking with people, and I can keep a positive attitude when I am well rested, but I cannot stop myself from feeling. The best I can do is recognize that I was upset at having cancer and the way it tired me out. I was jealous of the staff my age, their health, and their attitude.  I can acknowledge that it made it harder for me to be kind and empathic. The best I can do is give myself some grace for my behavior and let a hard situation be hard while I try to be a better person tomorrow.

 

Mountains and Protons

The past two weeks I have been in Richmond while my radiation is being mapped out.  It was a small taste of feeling normal again. I tried my best to soak up the sunshine and allow the rest while wrestling with the anxiety of an unplanned vacation.

My treatment plan is complete and includes six weeks of daily radiation therapy (Monday -Friday). After going to multiple radiation oncology appointments, I decided to go with Dr. R at the University of Maryland Medical Center: Maryland Proton Treatment Center.

Proton radiation therapy differs from typical radiation because of the way it delivers radiation to the brain in a proton vs. a photon. Normal radiation is delivered in a photon or light ray. When a photon reaches it’s destination point it scatters and hits more normal brain tissue with radiation. Protons carry weight, so when they reach their destination, they drop the radiation off and that’s it, saving normal brain tissue from radiation exposure. I was recommended for proton therapy because of my age. The younger you are, the higher the risk of developing a second malignancy from radiation exposure. No thank you.

My personal pro and con list for my radiation includes:

The positives:

  • I connected well with the team and Dr. R at the Proton Treatment Center despite him trying a little too hard to know about the cool spots in Richmond (luckily he had a young resident that looked at me apologetically).
  • More of my normal brain tissue will be spared, I have no interest in a second malignancy.
  • Dr. R has worked with someone (singular) with a similar diagnosis to mine (first time I heard this), and she is doing well (knock on wood).
  • There really weren’t any other options for proton therapy in the area and I am very lucky Dr. R fought with my insurance company to get it covered.
  • Crab cakes.
  • Dad dates.
  • Most importantly it should significantly reduce the risk of a local reoccurrence of my sarcoma.

The negatives:

  • My dad has to take off six weeks of family medical leave to take me to therapy, which means I will have to listen to lots of radio baseball. I am not a radio baseball fan (is anyone?).
  • The best time slot available is 8:00am, so early mornings and fun commutes.
  • I will wear a scary looking radiation mask every day. Please google radiation mask for a visual.
  • I will be tired. I’ve gotten pretty good a napping so i’m not too worried about this one.
  • I will have a small bald spot (a small price to pay in comparison to chemo) but I am told my hair may grow back a different color and texture. It’s a good thing colored hair is in these days.
  • I won’t be able to drive so my independence will be put on hold again and Jeff will have to endure long hours of 95 traffic during rush hour (sorry Jeff).

Overall, the pros far outweigh the cons. I am very fortunate proton therapy was even an option. Right now, the doctors are not recommending any form of chemotherapy since there is no evidence the cancer spread. If all goes to plan, I will be back to my normal world around the second week of June and I may get to have my real hair at my sister’s wedding (sometimes it’s the little things).

In the grand scheme of things, I am fortunate that six weeks blasted by little protons in a spider man mask is all that is being prescribed. I am lucky I have the resources for treatment and I am overwhelmed by love and support. I can feel the optimism from my doctors and 95 percent of my day I do not worry. The other 5 percent, I remember the unpredictability of cancer and the rarity of my condition, that I spend most of my day trying to forget. A little bit of fear is a small and humbling burden I will gladly accept in exchange for predictable doom.

Putting cancer aside, I got to escape to the mountains last weekend with Jeff. I somehow convinced him to hike a 9 mile trail labeled difficult that ended up being more like 12 miles with my sense of direction. It was challenging and at times stressful even a little scary. It reminded me I can do hard things leaning on the help of others (in this case a very tired boyfriend with a slightly better sense of direction).

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We stayed at our first bed and breakfast that included fluffy oversized robes, local wine, fires by the clear blue Maury river, a real live turkey alarm clock, breakfasts of grits with blueberry compote, local bacon, eggs, and homemade granola. We made friends with a couple my parents age on their anniversary enjoying the company of one another so much it was contagious. Then the trip concluded with a night fishing in Richmond with Jeff and my dad and we actually caught fish.

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The last week was a good reminder of the joy worth fighting for.

Swinging Bridge

Emoting

Let’s talk about emotions.

Mine are all over the place. I think the closest comparison is a toddler. Most of the day I teeter through my day smiling, laughing, and genuinely enjoying the company of my friends and relatives. When I am in the moment I am not wandering aimlessly in the dangerous future of “what ifs”. This is my default but I need more naps than the older 28 year old version of myself. If I can remember to allow myself to have one, I can function appropriately.

I don’t know my limits anymore. I fight with the desire to live each moment of my life (not spent in a doctors appointments) to the fullest and the need to crawl under my sheets and hide from everything hard and exhausting until I can come out on the other side (wherever that maybe).  Right when I thought I was getting to know myself at 28 everything changed.

I was so happy.

Am I still happy?

I think so.

I want to be.

I am.

It’s a progression of thoughts, but I end up in the same place.

When I am home I want to be out living my life. When I am out living my life I want to be home. The indecision is exhausting.

I want everyone to treat me the same as before this whole cancer thing happened, but I am beginning to accept I am not the same. I have new triggers now I didn’t have before. I can’t handle sad or scary shows, I can hear sounds I never use to hear before, fluorescent lights might as well be the sun, and it’s completely normal for me to be walking through the grocery store and all of the sudden, the pipes behind my eyes break and water starts gushing out. This happens too quick. I don’t have time to fix them with a happier thought. Better in the grocery store alone.  I know there is strength in vulnerability, sadness is okay, and breaking down is healthy.  I am not afraid of my own tears. I am afraid of the people that mean the most to me worrying. Even the loved ones that get it. The ones that understand in order for me to come out of this experience stronger I need to let myself feel all of the hard emotions. They normalize my tears and tell me it’s expected and they are right. That doesn’t make it easier for them to see me in pain. It doesn’t stop their own pipes from leaking. This is a heavy burden to bear. It’s much harder to get comfortable with their tears than my own. None of us should be hiding in grocery stores with puddles beneath our feet. Maybe we share pain because we share love and there is no hiding.

I am relearning my boundaries. Trying to figure out when to push myself towards health and when to rest. I know this game in different scenarios and now I need to learn it in the world of cancer treatment. I am trying to be patient, to be open, and to be strong. I am trying to be honest to everyone and to myself. I know I can handle whatever comes next with the caveat that I get to break down, cry, laugh, be unsure, and freak out whenever I need to. I am going to embrace the tired toddler inside of me and forgive her for what she didn’t know before she learned it (thanks Maya).

A-Squad: Dr. A

Last week was spent in doctors appointments and scanning machines with lots of smart people still trying to understand my exact diagnosis. All tests still confirm the pathology of a pleomorphic spindle cell sarcoma primary to the brain (please don’t Google it’s a rabbit a hole).

I have become professional at sitting still and maybe falling asleep in MRI’s and I am no longer afraid of the funny feeling (somewhere between peeing on yourself and getting butterflies in your stomach) that comes from the contrast given for cat scans. All my cat scans came back clear with no evidence of any metastatic disease and my one month post op MRI came back clear with no evidence of any cancerous cells trying to regrow in the same spot.

These are all good things 🙂

My case has been presented at multiple boards including the John’s Hopkins Sarcoma Board, The Johns Hopkins Brain Tumor Board, Shady Grove Hospital, and University of Maryland Medical Center Proton Therapy Center. I am a little overwhelmed so many smart people want to talk about my little brain…

After some trial and error, I have narrowed down a team of doctors I am comfortable with and a treatment plan is in the works. I am coming to realize the relationship between a patient and their doctor can have a strong influence on the patient’s emotional status. More specifically, I can be in a room with two different doctors who have the exact same information but communicate it differently and I leave one meeting  with uncontrollable tears streaming down my face and one feeling confident and strong. I consider myself an emotionally aware person and this shit still happens. There is a power hierarchy between a patient and a doctor and communicating difficult information is an art. For me, being a good artist is a critical component to being a good doctor.  I have lucked out with most of my doctors.  I planned to talk about the whole team in this post but as soon as I started writing about the first doctor I realized this will need to become a series or you would be here all day (or more likely checkout).

First and foremost, my brain surgeon, Dr. A.  Dr. A found out about my case the same Saturday I came into the emergency room. He was not on call, but received a call from my Dad’s Cousin, and came in to meet me anyway. The very first question he asked me was “so what do you do?”. This was important because he didn’t ask me “what’s wrong?”,  “When did the headaches start”, “Can you tell me about your symptoms”, or even “how are you feeling”. He started the conversation with who I am as a person and not who I am as a patient. This made me feel more human. Through this conversation I learned he went to University of Maryland for his undergraduate degree and Virginia Commonwealth University for his advanced degree (just like me), he had spent time in Richmond and Maryland (just like me) . I liked him already.  He kept 99.5% of my hair intact during the brain surgery, filled my request for a diet coke immediately post surgery, and managed to get 100% of my tumor out of my brain without out leaving me with any “neurological deficits” or complications.

All great things.

However, what meant the most to me came in our conversations post surgery. We needed to talk about the scary stuff. During the surgery, Dr. A had a pretty good guess based on the texture of the tumor, that it was malignant. He balanced an optimistic nature with realism it a way that gained my trust very easily.  He was very careful to not provide my family and I with false hope, nor did he lead us down unnecessary paths of fear we did not need to take yet.

The first meeting with him after being discharged from the hospital was the hardest. We didn’t have a full pathology yet and things weren’t linking up. The unknown is always the hardest. The tumor looked and felt like some of the more aggressive tumors after surgery, but the way it appeared to act in the MRI (encapsulated, didn’t seem to move or spread, attached to my connective tissue, no edema anywhere else in the brain, and  very large). Wasn’t consistent with the way aggressive tumors tend to act.  In this first meeting, I could feel Dr. A’s worry. It was painted on his face and it soon became a grey cloud over our house. The ability to feel empathy in a room from a doctor, whether from good news or bad, makes you feel like a human. Even as a therapist myself, I didn’t appreciate this feeling until it was missing in later appointments with different doctors. He shared with us the potential for some of the more negative diagnoses but repeatedly reminded us of the inconsistencies and the importance on waiting for a pathology from the experts at Hopkins. He also spoke of hope, strength, and resilience despite any one diagnosis, and with my mom’s persistence, he included prayer in that triad.

The second meeting felt different. The pathology came in and  Sarcoma was the diagnosis. Dr. A,  was a man careful with his words. He understood that patient’s in situations like mine or my parents, sit in these small rooms while the walls close in on our world. We latch on to any hopeful bit of information with everything we have while the negative gets filtered out. False hope can hurt the most. With caution, he told us sarcomas tend to be treatable and potentially curable. I am still holding tightly to those two words.

What he may have been less aware of was the slight but important difference in his  own affect. It was brighter. He appeared more hopeful, smiled more, and there were more jokes during this meeting. A patient notices these changes in affect. You can feel it in your bones even from the most careful of doctors. Empathy can’t be taught in medical school but it can be learned through human experiences. Dr. A was a master in empathy, as well as, brain surgery (I know I am underplaying this area just a bit).  He clearly made it to the top of my A-squad of doctors. I am grateful for his excellent work as a surgeon, his patience, and his empathy. I trust him, which is a good because as he told me, I’ll be stuck with him for follow-up MRI’s for a long time.

Chloe

Perspective is an important tool.  I am finding the ability to view any one situation in terms of varying perspectives can be very helpful. Starting with my late car, I named Chloe (Yes, I personify my cars).

Chloe was a 2007 kiwi green Ford Focus with 169,000 miles of adventure.  Each morning I drove her 50 miles to work, from Richmond to Fredericksburg, racked with anxiety about when her next breakdown would be. Chloe had a tendency to shake, make rumbling noises, her windshield wipers struggled to reach the glass on the windshield, her heat and air conditioning seeped out of any vent they could manage, and funny  unidenitfiable lights frequently came on. The only good things about Chloe were her seat heat and since neither of my sisters would ride in her, I was constantly chauffeured.

With my post graduate school budget, school loan debt, and lifestyle management fees, I was determined to put off car payments, as long as, possible.

Chloe had other plans.

In the first week of March, around the same time my headaches peaked, my check engine light came on. As noted above, I was not too familiar with the meaning behind all of these lights and I would procrastinate finding the answers.  Fortunately (or unfortunately) Jeff   identified the check engine light and provided directions to take it to Autozone for a free engine check. At this point, I had too much information to ignore responsibly. The Autozone report explained (In detail I could actually understand) that the thermostat was broken and this was a very bad thing. In a last stitch of hope, I called my dad to make sure this was not something that could wait another week or three and he confirmed my fear that Chloe would need fixing.

My anxiety (and my father) forced me to be a responsible car owner and I found myself at a mechanic who explained Chloe’s thermostat would cost $500 to fix. The mechanic, like my least favorite doctors, explained terrible news with a big smile on his face. Since Kelly Blue Book valued Chloe at $99,  I marched right out of that mechanic and decided  Chloe would make it one more week or triple A would have to come to my rescue. I texted my cousin Marc and let him know I would be coming to buy a car on Friday.

I sat inside my broken car with my head pounding and a flood gate of tears began to flow. The combination of my car, my head pain, and Monday looming around the corner were all too overwhelming for that moment. I called my dad for some sympathy and he listened to me complain about the headaches and the car. He was starting to make me feel better until my mom popped on the phone (which usually happens when I call my dad) and gave me a lecture on how I needed to take off work immediately and go to the doctor on Monday. Work was already stressful with two coworkers on leave and I hate taking off work. I was frustrated with her advice and I may or may not have said bye really fast and hung up (not the same as hanging up on her). I texted Jeff to complain about my mom (this is a typical sequence of events) because he usually agrees with me and makes me feel better, but this time he took her side. He thought I needed to go to the doctor ASAP even Monday if the doctor could get me in. I cried again, but I listened.

This is when all the broken glass begins to become a mosaic.

I emailed the doctor on Monday and she made me an appointment that afternoon.  I had plans to see my cousin on Friday for a new car. What at the time felt like a stressful shit show of a week turned out to be my saving grace. The headaches were out of control by Thursday night and I was seeing all kinds of crazy lights on my drive from Fredericksburg to Gaithersburg. I remember walking into my parent’s house and crying to my dad about how strange I felt at work and during the drive home. I went to the ER that Saturday to learn about the brain tumor. I wouldn’t have wanted to be anywhere else but home or with anyone else but my parents to hear that kind of news.

I spent the last four years of my life complaining about Chloe’s shortcomings but in her last act of love she saved my life. She put in the hospital, where I needed to be, with my mom, dad, and the rest of my family by my side. I am still in awe of the synergy of the sequence of events that led to my surgery but it makes me feel grateful and hopeful for the greater plan of my life.

Context Clues

I’ve always liked words. Despite my mom’s constant complaint that I am a poor speller and my grammar could use some work.  I love to write. I also love reading and if you’ve ever spent time with me in person you’d know I love to talk. I thought everything important was expressed through words until recently.

As I sat on the emergency room bed with a throbbing headache awaiting the results of my first cat scan I felt silly. I could hear the women’s husband just beyond the curtain to my right pacing anxiously. The nurses were moving around with a frantic pace as the women’s vitals set off every alarm on the machine. Something was wrong. From what I could gather she was a type 1 diabetic and her blood sugar was extremely low. She told her  husband she couldn’t remember the last time she had something to eat, as the doctor rushed in to give her what they called a bear hug to warm her body. I could feel the fear in her husbands breathing.  As all this was happening I felt like maybe I was overacting about my own condition. I remember thinking I should have just waited until next week to see my outpatient doctor because there were people who actually needed these beds.

When my own emergency room doctor came in, he stared at me with an intensity that told me right away something was wrong. He did not need words. He told me he had not reached my OBGYN (I was convinced my headaches were a side effect of my birth control and I thought I was going to the ER to have it removed), but that we had more important things to discuss. My mom told the doctor my dad was on the way and he said he would wait. It was the longest 5 minutes of my life. There was no question anymore. He was going to drop a bomb on us. He sat down across from me and stared at me before he began talking. I will never forget the look on his face. I don’t know if it was fear, sadness, or urgency, but I knew he wanted me to understand something that could never be clearly expressed with words. He began to explain my cat scan was abnormal and a large brain tumor was found. I would need an MRI to confirm and they were finding me a room in the ICU.

A sense of calmness despite the head pain rushed over me. I knew I could handle what was coming next. I turned toward my parents as the doctor left the ER “room” and I remember telling my dad not to cry.  I told him that everything was going to be okay. He tried to choke out the words “I’m not crying” through the tears but eventually he gave in. When I was telling him I would be alright I wasn’t just trying to comfort him, I really believed it. I don’t know where we find these moments of strength in our darker hours. I believe in God and I think he was with me, but I also believe in the power of love and I could feel it in that space with my parents. I knew it was going to be enough to protect me. Later my dad tried to describe how helpless he felt in that moment but he didn’t know his presence alone was enough. It felt like too much of a coincidence for me to be in that space with two of the people I love the most in this world hearing this kind of news.

There really aren’t words to describe this day for me or the emotions that went through the three of us in that room made of curtains. I just knew that I had my family, I had love, I felt clam, and I knew everything was going to be okay. Today, everything still feels okay 🙂