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So Now What??

I woke up this morning in the now familiar way, my legs felt heavy and my back was throbbing like someone was punching me in my spine. I struggled to turn over, and saw Mica's hair peeking out from the comforter. I pulled her close, ignoring the tightness that seized my back as I slid her warm tiny body against mine. Finally I woke her with kisses and pulled myself out of bed, breathing deeply until the pain washed away. I left it behind me and shuffled out to start my day.

Sheila came for me right on time and she drove us quickly to my doctor's office, pausing at all the speed bumps and helping me out of her truck. After a long wait, and once again explaining what was happening to me, Dr. Hanson called Dr. Adler and they spoke. Such a simple event took me days to orchestrate.

So, yes the tumor is swelling, and I was put on oral steroids. I cringed but then remembered to be thankful I was dodging getting the steroid shot in my spine. Then Dr. Hanson said he was putting in an order for the steroid shot through the insurance to be done next week. *joy* I took the information and put it in my pocket to be processed at a later time. A prescription form was scribbled on and I was told to come back next week. I am now taking prednisone (steroid), an anti-inflammatory, darvocet, and prilosec to keep my stomach calm from all of the dope they are pumping into me.

The plan is to shrink the swelling with oral and then injected steroids, and hope the pain all goes away. Hopefully I will then be able to give the tumor time to shrink from the Cyber Knife treatment I already had on it. If the pain and weakness persists, then I will have to have the little *ucker out.

Now I am home attempting to have some semblance of a normal day, whatever that means.

Attempted Follow Up?

My awesome girlfriend Sheila helped me get the kids situated today, then took me to my doctor's office for my emergency follow up appointment. The plan was to go to my GP Dr. Hanson's office at 12:30, and he would call my neurologist Dr. Adler for further instruction. We arrive at his office to be told he was actually at the clinic and had already left for the day....... ????? I told the girl my husband called and scheduled an emergency follow up with him, so why would he be at the clinic and then leave? Sheila drove me to the clinic to see the other doctor in the group, only to find out he is a Physician's Assistant and unable to do anything. Dr. Adler said he needed to speak with my actual doctor, not a PA. I told the PA well then call Dr. Hanson and have him call Dr. Adler. They had us wait, and then insisted I just come back tomorrow. I told them I was switching doctors, that is absolutely ridiculous. I cannot walk, I am in intense pain, I can't take care of my kids, I could have permanent damage if this is not handled in a timely manner. They told me if I switched doctors this entire process would take even longer, and basically I have no choice but to wait another day and go back tomorrow. I finally gave in and picked up the Darvocet from the pharmacy and started taking it. It relieves some of the cramping and makes the pain more bearable. Sheila is a huge help, she is going to take me back yet again tomorrow morning, and hopefully then I will finally get some answers!

ER Trip for Tumor Swelling

I debated whether or not to share this post. I tend to keep my ongoing health issues private with my family and the NF2Crew. I don't want to be the sick mom, the friend with a disease, the Deaf girl in the class. I am more than that. I am a wife and mother, a student, a writer, a runner, a friend and a daughter. I don't wake up everyday and think of myself as disabled. When I share about my journey with NF2 my intent is to inspire donations to CTF for a cure, share experiences with fellow NF2ers so they can get the help they need, and offer a blog where other people can become educated about the personal side of NF2. This blog is not for whining. There is no whining allowed. So, I debated whether or not to share this post...

Back in June of this year I had CyberKnife on a tumor in my lumbar spine at Stanford with Dr. Adler. On my last day of treatment I ran 3 miles, joined my husband back at the hotel, and had a nice glass of wine. As we made the long drive home I told Paul how incredible it is to treat a tumor on my spinal cord without major surgery and recovery. I assumed that was the extent of the experience, and came home to focus on running a marathon. Over the last 2 months I have had some ongoing pain and cramping in my lower back. My MRIs were reviewed, and no change in the tumor was noted. I carried on as usual, until over this last weekend. My lower spine has become so stiff, I was able to touch my toes a month ago, suddenly it was excruciating to bend over to wash my face. Lifting my legs to shave, carrying Mica, sitting up straight... one by one normal things became painful. I contacted my neurologist at Stanford and waited for a reply, which I knew would take time since it was the weekend. Today I woke up in considerable pain and planned to go to my general doctor for xrays to rule out an athletic injury. Then at about 10am I developed a horrible migraine. I was nauseous, dizzy, and my entire lower body felt like it was cramping inward. The pain radiated in shocks throughout my lower waist and upper legs. Friends took my kids, Paul came home and took me to the ER.

I just got home, the doctor in the ER convinced me to take darvocet for the pain, which obviously breaks my no pain medication rule. Pain medication is evil, I believe that pain should be dealt with to as much of an extent as possible. Today, the pain won. X rays ruled out athletic injury, and other testing ruled out kidney problems. Dr. Adler got in touch with us and said it sounds as though the tumor is swelling from the radiation. Sometimes, they swell larger before they shrink. I knew this was a possible side effect, I just didn't know how bad it was going to hurt. The tumor is most likely causing congestion in my spine. Tomorrow I am to see my regular doctor, and Dr. Adler will call and create a plan with him to deal with this. As of now the suggestions include a steroid shot into my spine or surgery to remove the tumor.

I'm home alone now, my skin is pasty and the pain is throbbing quietly, as though patiently waiting to break through the darvocet. My children are with friends, but my intelligent sensitive boy is already asking questions. He even asked his teacher at school. It breaks my heart to think of how I will care for them tomorrow. I don't want to be the mom who parks her kids in front of the TV while I sleep away the pain. So I wont. I still have a choice. I have finals next week, I will finish them. I will play board games in bed with the kids if I cannot walk around again. I will run Surf City in February, even if I have to hobble. I've had my eye on that medal for way to long to let some stupid tumor mess it up. These things may sound trivial, but they are the pieces that make up my life.

*Never Give Up*

Evil is Relative

There have been noticeable lapses of blogging lately, obviously! My excuse is that I am saving all of my writing juices for my philosophy class. The last paper I posted here I only got a high B, I was so ticked at first. Then I grew up a little and reviewed my paper, and realized I was free writing as though it was my blog instead of following simple college paper structure. I hope to have rectified that mistake in the following paper! I still need a title, suggestions?

In Thomas Aquinas’ Summa Theologica, he begins each philosophical discussion by stating the most common objections people have given to the evidence he will present as the body of his work. In his discussion on “Whether God exists?” Aquinas lists the first objection to God’s existence as the existence of evil in the world. If God is infinite and good then evil would not exist. Evil does exist, and so God must not exist. Aquinas objects to this in the conclusion of this article with a reply that God’s goodness is so infinite, “that He should allow evil to exist, and out of it produce good.” I agree with Aquinas that the existence of evil does not disprove the existence of God, but for different reasons. Those who say evil is rampant in our world are usually defining evil by their own perspectives rather than as the natural occurrences they are. When events are inescapably defined as evil they occur by the hands of Man, and not God. Man is arrogant, and his chosen descent from common sense to religious dogma has led him further from God allowing the world to seemingly appear as evil. Evil does not exist, but God most definitely does.
It is natural for each of us to define the world through a filter made of our own experiences. When something horrible or seemingly cataclysmic occurs we are quick to characterize the event as evil. What seems evil to one may be justice to another. Evil is relative to the person defining it. A woman who is raped would label her attacker as evil, but in reality he is mentally ill because no mentally healthy person would rape another human. A storm which devastates a community may again be labeled as evil when it is truly a simple random act of nature. Any individual act of evil can be delineated as nature, whether physically or psychologically. God set nature on its course. Nature allows pieces to fall as they may, and it is incorrect to ascribe the events that cause us grief as evil rather than natural.
There are no definite statements in this world, there are always variables. When an entire group of people commit horrible offenses it is difficult to say that it was simply a natural occurrence. If a group of men rape a vulnerable woman it is very improbable that all of them were mentally ill. Most people would define babies being tortured and murdered during ethnic cleansings as evil. They ask themselves why God would allow these atrocities to occur, and conclude that God must not exist. When people choose to turn away from God there is an absence of Her, and events we describe as evil may occur without a natural explanation. The greatest gift God gave us is free will, and we return the favor by blaming Her for our own actions. These are not actually evil acts, but unnatural acts. God does not allow evil, people do.
It is Man’s arrogance that has assumed to conceive of God’s intent, and written a script to meet his own needs. Nobody knows God’s purpose, and to assume so is ignorant. All we can do is have faith in God, and not the politics of religion. The further away from God we walk and the closer to flawed dogma we follow the more heinous and animalistic our actions become. It is reason that separates us from animals, and that was God’s gift to us when he gave us free will. When we dismiss reason, and are ruled by greed, the result is a bleak outlook which most of us presume to define as evil. It is the exercise free will, not evil, which has led us to the present state of the world.
Evil does not actually exist. Bad things happen due to nature, man, and free will. When those things occur man tends to classify that which does not suit him as evil. There is no such thing as cold; cold is simply the absence of heat. Likewise, there is no such thing as evil; evil is simply the absence of goodness. Evil is a degradation of goodness, therefore it could not exist without the ultimate good to call its opposite. That ultimate good is God. Likewise, man is separated from God by degrees, and the further away from Her a person may be the more readily their actions will be definable as evil. So evil actions may occur when there is an absence of God, but evil itself does not exist as an entity to oppose God. If something does not actually exist, than it cannot prove that something else does not exist. Evil does not exist, and so God does.

Awkward...

I have vague repressed memories of my awkward years, as everyone else does. Being called Olive Oil and Chia Pet, girls driving by me as I walked home alone and yelling profanities at me, being bullied, picked on... jumped. Then going home and being caretaker to my Mom while my Dad worked out of town for days at a time. I have come across so many people who whine about their pasts, when the truth is we all have painful moments scarring the space between the happy ones. I matured past the point of being bothered by the ignorant, and rejoiced in aging past the need to conform. No more awkward haircuts and hurtful nicknames, suddenly those people who tormented me for years on end disappeared, washed away in time. I found myself surrounded by other adults who couldn't fathom spewing hateful rhetoric at a strange little girl, and yes I know I was a bit strange. I attracted other positive people, and moved forward and away from my childhood. Or so I thought...
This morning I sat in my philosophy class, 5 minutes late as always, following a captioned discussion of Aquinas on a laptop. The professor was discussing how Aquinas used earlier philosophers' works, uncited, to prove the existence of God. This semester is more than halfway over, and for the first time, he asked us to form into groups of 3 or 4 to work as teams on a specific topic. Suddenly I was in 6th grade PE again, and I held my breath as the professor actually chose team captains and told us to split up on our own. I glanced at my captioner with a smile and looked at those grown adults sitting around me. Every single one avoided eye contact with me, and the girl sitting closest to me actually stood up and walked to the other side of the room. At this point I saw the professor glancing back at me, and around the room, noticing as well that people were scattering away from me like I was the Big Bang. Everyone in the class can see that I am Deaf, and that I have to sit with my captioner who is plugged in and stationed in a way that she cannot move, and yet still every single one moved away from me. This class, who was just discussing how it is possible for a perfect God to co-exist with evil, abandoned me like a pack of prepubescent boys afraid to catch cooties. I could see the professor making his way toward me, and I saw in my mind's eye how he would walk up and announce that I needed a group, forcing an already formed group to come sit with me, and everyone would turn and then again avoid eye contact with me. I told my captioner I would text her later, grabbed my notebook, and walked out of class without a second glance.
As the door fell behind me the cold fall air hit me in the face and the tears that rimmed my eyes dissipated. I walked with purpose to my van and allowed myself to sit for only a moment, attempting to absorb what had just happened, and reminding myself that it was absolutely ridiculous, and I am not in 6th grade anymore. "I'm not Josie Grossy anymore".... I'm not Olive Oil anymore! I am not the one with the problem, an entire class full of adults, and not even one was kind enough to include a classmate with a special need, that is the problem. The difference is, now I am old enough to see that. Unfortunately, it still hurts, and now I can't go home to my Mom and lay next to her in her bed as she watches Oprah, expecting my Dad to walk in any moment with his million dollar smile. Instead I have a husband with strong tattooed arms, and adorable children to climb onto my lap and tell me they love me with eskimo kisses.
I can't help but long for my childhood anyway, scars and all.

NIH Results

Paul and I flew to NIH in Bethesda, MD so I could take part in the clinical study of NF2 being conducted by Dr. Asthagiri. My Nana flew in and spoiled my kids rotten, so I was able to focus completely on the trip. We left Sunday before sunrise and as the plane began it's descent into Maryland all we could see were golden leaves. I guess that is what Autumn is actually supposed to look like.

I had MRI's done by a high tech MRI, saw an ENT, a neuro opthalmologist, and finally on the last day sat with Dr. Asthagiri to go over my NF2 history. Luckily I had already emailed him a timeline, my memory is foggy, probably by choice at this point. The neuro opthalmologist saw what could be a tiny hamartoma in my right eye, we are going to watch it. The ENT thinks my choking episodes may be related to my reflux and recommended prilosec. The MRIs were incredibly clear, and Dr. Asthagiri was able to show me area by area how many tumors I have. I don't know if the MRIs were just more accurate, or if I have had growth everywhere, but everything seemed huge. My vestibular schwannoma which I have had treated with Gamma Knife are still stable, but the huge double blob at the top of my head made me cringe. Looking at my spine, I have a bunch of tiny, unassuming growths. The doctor assures me there is no need to worry. I know there is no point in correcting him, each of those tumors will grow. I know full well as of today I am just fine, it is the future those tiny tumors represent which I fear. At the very top of my spine, maybe even near my brainstem, was also a small tumor deep inside. This was my first introduction to this particular tumor, and my stomach twisted even as I smiled and nodded politely at the doctor. The lumbar tumor I had treated with Cyberknife looks larger now rather than smaller, but that could be from swelling. I've had cramping and pain, but attributed it to... I don't know... running 26.2 miles? So we will wait 6 months and reevaluate that tumor, if it continues to grow, I am looking at yet another spine surgery.

There is nothing I can do right now, or any decisions to be made. Like most people with NF2 all I can do it wait, and try to keep looking ahead. I can't crawl under the covers, I just have to shake it off and keep running.