Wednesday, April 27, 2011

A Cry Baby Emerges

I’m sorry I’ve gone “radio silent” for a while.  I’ve been having a difficult time coping with pain, fatigue, nausea, and a complete loss of appetite that has resulted in frightening my family significantly due to my weight loss.  Who knew that the elusive and yet highly coveted short cut to weight loss is just a little bit of radiation!  I have been trying to do a bit more lately as well.  I’ve started to work full time again.  It’s an interesting thing because I have to stop every couple of hours to nap and recharge.  I also started physical therapy today.  My physical therapist seems very nice and he feels optimistic that we can make some good progress.  Meanwhile my pain doctor is interested in trying botox to paralyze my jaw and neck muscles in the hopes that the very painful spasms in those areas will stop.  Some of my docs are skeptical, but I guess at this point anything is worth a shot.  He also ordered an MRI that I had done yesterday.  We don’t expect to see anything significant with the tumor but I’m curious to find out what is happening with all the liquid that is in every space in my head.  I have a theory that it is responsible for the pain that I feel anytime I’m in a slightly cold (what would seem comfortable to most) environment.  I also saw a maxial facial surgeon yesterday.  He wants to consult with my neurosurgeons and pain doctor to see if a surgery that would release a tendon in my jaw and saw down a bone is worth doing in order to get me to be able to move my temporal mandibular joint some more.  Tomorrow I have to draw some blood to make sure my blood thinners are at the appropriate level and Friday it’s time for the experimental shot again.  Never a dull moment! 
I wrote the following section of a blog a couple of days ago but was unable to finish it.  I have more to say on the subject and I promise to continue in another blog.  For now I just really wanted to update everyone and put something up. 
To describe myself as sensitive lately is an understatement.  I’ve developed this new and highly embarrassing habit of crying at the drop of a hat.  I cry when I’m happy, sad, nervous, frustrated, grateful, feeling loved, etc.  What’s worse is that it seems as this is one more thing I have no control over.  Luckily I have yet to full out lose it in a public arena. Usually only one or a handful of people at most are witness to my tears.  I associate crying with “something’s wrong.”  When I see someone crying, I want to console them.  I also think of myself as having a public persona of someone that is “put together” and cool, calm, and collected.  The inner me is not nearly as put together or as cool, calm, and collected as the outer me.  As I tell my friends, who ask me how it is I always seem so confident, “You just fake it till you make it.”  I’ve been successful because I trust my outer persona.  I believe that she knows what I’m doing even when inside I’m scared and full of doubt.  But how in the world do I cope when my outside persona has now become a ball of emotions that all culminate in the same external response – crying.  I’m not sure of the answer yet because so far what I’ve been doing to cope is (you guessed it) cry!

Tuesday, April 12, 2011

Updates, Acknowledgements, and A Request For My Tumor

Last week I went to go see my new pain doctor.  What a different experience from Dr. Strange!  He was everything that I hoped he would be and he gave me hope for what lies ahead.  He did tweak some of my medications and gave me some more tools to try and help with pain management.  Most importantly though, he took his time (he spent an hour with me), explained things at length, and he made a follow-up appointment for next week (and told me to please feel free to go in or call him if the need arose).
Unfortunately the very next day I felt frustrated because I was in my usual pain.  My radiation oncologist tells me that on his lab coat it says M.D. not GOD.  He's right.  There are no simple answers for what I'm experiencing.  In fact, it's mostly a guessing game as to what will work because there are so little patients to compare my case to.  But when I see a new doctor, there is so much hope in me that all my pain will disappear.  Of course this is an unrealistic expectation so I experience a letdown.  Well to be honest the day after I saw my new pain doctor I had a little bit of a meltdown.  I was on the phone with Ili crying because I couldn't even eat a small piece of watermelon without experiencing a significant amount of pain in my jaw and throat.  I just keep trying to remind myself to roll with the punches and that this too will pass!

Yesterday, I had my first follow-up visit with my radiation oncologist since my radiation treatment ended.  I call him Dr. Teddy Bear.  He is wonderful!  He's always cracking jokes and making everyone laugh but what really shines through about his personality is his love for his patients.  He doesn't know why I'm feeling all of the pain I'm feeling and he has hope that the new pain doctor will be able to get some answers.  He suggested that we look into ordering another MRI to check and see if the fluid surrounding my tumor has increased.  Perhaps there is a way to drain the fluid and alleviate some of the pressure that I feel when I lie down.  I'm currently dealing with a catch 22.  My body requires a lot of sleep but the sleeping position causes more pain.  Most nights I'm up between 3 and 5am and running to take a hot shower in order to alleviate some of my pain.  I usually get at least 1 or 2 nights a week when I get a full night's sleep (like last night) and I'm always extremely grateful for those!  Dr. Teddy Bear hypothesizes that the heat of the shower may help bring down the inflammation that is currently occurring due to the radiation effects.  Whatever it is, the hot showers work.  I joke that I'm the cleanest girl in America because I take 3 - 5 showers daily.  In addition, my professor/mentor (we'll nickname him Dr. Mentor) has taught me some excellent new breathing techniques that relax and sooth me as well as give me a little extra energy.  I don't have nearly as much energy as I'm used to so any extra bit of energy comes in extremely handy.  I also listen to an audio track he made for me to help with pain management.  It is a wonderful tool in my pain management box!  Between the narcotics, breathing, showers, audio tracks, and the excellent support system I have you would think that I'd be pain free.  Unfortunately I'm not.  The truth is I get frustrated quite often but at the same time I'm ever so grateful for the support system and the wonderful team of doctors that are always searching for answers even when they keep coming up with more questions. 

Oh tumor of mine, I have always considered myself a pretty patient person, but you are teaching me lessons in patience beyond what I thought were possible.  In addition there’s the overwhelming gratitude you have filled my life with.  My family and friends; Dr. Teddy Bear – which looked at me with watery eyes yesterday and told me, “Please take care of yourself, I worry about you;” Dr. Mentor, who checks in with me, teaches me new relaxation and pain management techniques, and has gone above and beyond for me during this whole process; Dr. neuro otologist who tells us to call his cell phone anytime we need to; Dr. Endocrinologist who is trying an experimental treatment on me and responds to my emails (with 10 questions) minutes after I email him; friends of a friend that pray for me weekly and met last week and prayed over me in such a special and moving way, friends of my parents and of m friends who are constantly telling my friends and family that they are thinking of me and praying for me.  I would not have been privy to this kind of awareness of the love that exists in my community and extended community without you tumor.  I can’t thank you enough for all of this!  But please please please know that you have done your job, the gifts you have given are not lost on me.  It’s now time to stop swelling and to start shrinking.  Thank you in advance for listening to my request my stubborn (I mean wonderful) tumor! 

Saturday, April 2, 2011

A Disaster of A Doctor's Appointment

Earlier this week I had an appointment with a pain specialist.  I'm still having a difficult time controlling my pain so I had a great deal of hope that this doctor would be able to help me.  What happened during the appointment left my family and I almost speechless.  In fact, we (my mother, father, Nate and I) left there happy and smiling.  The next morning, after we had time to process what had transpired, we realized that the appointment was not only a disaster, it trumped the appointment with Dr. No Bedside Manner (an earlier blog I wrote in January).

The appointment was scheduled for 2:30 in the afternoon.  We arrived at 2pm (as instructed) and were told that the doctor was running about an hour behind.  We smiled and told the nurse that it was no problem and we were happy to wait.  After all, we have been to enough doctors to know that a little bit of a wait is just part of the process.  Three hours later my parents are starting to get anxious that we are still in the waiting room.  After four hours, they call me to have my blood pressure taken.  There was a patient who had been waiting for a long time as well to see the same doctor and he became agitated to the point where the doctor came out to speak with him.  This was my first glimpse of 'Dr. Strange' (my new nickname for him).  From where I was sitting I could see the interaction between the patient and the doctor perfectly.  The patient is explaining that he is a diabetic and he needs a certain shot and he's been waiting for hours already.  Dr. Strange offers to move him into another waiting area and informs him that he has other patients waiting and if moving to another waiting area doesn't suit him, he can come back another day.  The response from the doctor was far from apologetic, it wasn't even empathetic.  But what was particularly bothersome was the smile that Dr. Strange had on his face.  It was a wide, teeth showing kind of smile; completely incongruent with the situation at hand.  To say it was inappropriate is an understatement.  I say to myself, "He's a little weird, but if he's a good doctor that takes away my pain, I'll wait the 4 hours and put up with the odd smile any day."

Next, my parents and I move into a room and we are seen by the physician that is the fellow working with Dr. Strange.  A fellow is a doctor that is specializing in a particular field of medicine.  Dr. Fellow was great.  He listened carefully, grasped everything that we said, made some great suggestions, and looked at the tumor inside my ear.  He happened to know my mentor and asked how I knew him. I told him that I was a student of his in the doctoral program at CAU.

About 20 minutes later Dr. Fellow and Dr. Strange both enter the room.  Dr. Strange still has the creepy smile on his face.  Dr. Strange greets everyone in the room  and then he says to me, "So you're a psychologist."  I tell him no, I'm a psychology student.  I realize that he either spoke very little to Dr. Fellow, or he just doesn't listen when people speak.  Throughout the visit he kept referring to me as a psychologist.  I conclude that he's just not a very good listener.  At one point my dad and I say something about psychologists and insurance and I say how that's a double edge sword.  Dr. Strange responds by saying, "Yeah, every time I see a psychologist I pay them in cash; try to help the poor guys out a little bit."  I had no idea what he was trying to communicate so I said nothing.  But looking back I speculate that he might have been saying he views psychologists as charity cases?? Seriously!? (Side note to mentor - I can't believe I forgot to tell you that one!!)

He starts the consult by asking what happened, what medications I'm taking, what's happened since radiation etc.  He then asks how many Percocet I'm taking and I tell him that it depends on my patch day.  By the third day of the patch I'm taking 1 percocet every 2 hours.  He askes, "How many is that?"  I tell him, "Well, it's not really exactly like that because at night I don't take 1 every two hours."  Meanwhile he is interrupting me asking how many is that over and over again.  Everyone stays quiet for a second - we're all confused that he can't do the simple math.  I then say 12 but really it works out to about 9.  He concludes that I'm taking too much Tylenol.  When I tell him that while I was hospitalized I was taking 2 Percocet every 4 hours (I'm trying to communicate that none of the doctors had a problem with the amount of Tylenol I was taking), he asks, "How many is that?"  After skipping a perplexed beat, I say, "The same amount."  He responds by changing the subject and says, "Maybe we should give you a dose of 50mg for the patch." About a minute before this statement I had explained to him that my oncologist told me to try two 25mg patches if one didn't give me full pain relief.  I overdosed on the two patches.  Clearly simple math is not Dr. Strange's forte.  My dad reminds the doctor that I overdosed on the 50.  Dr. Strange (perhaps slightly embarrassed, but still smiling freakishly) says, "Well we want to keep doing what is working." Someone should tell Dr. Strange that patients see him because whatever they are doing is NOT working!  So he then suggests switching the patch to every other day instead of every third day and switching the Percocet to 1 every 4 hours (a lower dose of Percocet than I've been on for a very long time).  Before I could digest the information, he asks, "What does the tumor look like?"  I tell him that it is the largest my physicians have ever seen for the type of tumor they believe it to be and it's amorphous in shape.  He then says, "Is it like a golf ball?"  Everyone in the room stays quiet for a couple of seconds.  Most people do not come up with the image of a golf ball when you say large and amorphous.  I respond with a description of how it goes from the base of my skill to my eye balls without actually reaching my eyes, down my neck, and out through my ear.  Dr. Strange then goes on to explain how there is not a particular pill for a large and a-typical glomus tumor.  We all just stare at the doctor wondering if he's trying to make a joke.  He continues to say that he's going to start me on a medication specifically for nerve pain.  Dr. Fellow has already explained that this medication does not work like Percocet or other medications designed for acute pain.  It needs to be monitored and titrated for the patient.  Dr. Strange doesn't mention anything about titrating the dosage.  Next the doctor wants to look in my ear to see the tumor.  I notice that he doesn’t place the sterile cap on the equipment.  He takes a look without actually placing the device in my ear.  I know that the tumor is deep and there is no way to see it without actually placing the device into my ear.  Dr. Strange says nothing about the tumor but he asks if anyone has tried to remove the wax (which is all he saw).  I tell him no, that we have seen several ENT specialists and they have all insisted that we not touch anything inside of the ear – BECAUSE THERE’S A TUMOR (with a large blood supply) IN THERE!  While Dr. Strange is pretending that he saw the tumor and digesting that his patient just stated the obvious, I ask him when he thinks I will be able to return to my "normal life."  The medications make me drowsy and my mind is not as sharp as it normally is.  He completely dismisses my question and tells me that he doesn't even tell patients that they can't drive on Percocet.  He states that these medications don't have any effect on cognition.  As someone who is experiencing the effects of these medications, I can assure you that the medications affect my cognition.  I can tell that pursuing this course of conversation is not going to get me anywhere with Dr. Strange so I drop it.  He then prints the prescriptions and shakes everyone’s hands goodbye.  As he's doing this he says, "It's always nice to have someone with you when you come, but maybe not all these people."  My father then notices that he's wearing a little girl's picture on his lab coat and asks if it is his daughter.  He says, "Yes, do you have any more children?"  My father responds, "I have 5, this is my oldest."  Dr. Strange then says, "Damn Catholics!"  His response was so out of left field that we all laughed.  But looking back it was highly inappropriate.  Then, I ask the doctor, "When do I see you again? Do I need to make an appointment."  His response was, "Well, don't be a stranger."  We left there without a follow-up appointment.

The next day I had individual conversations with my parents and Nate asking them what they thought of the appointment.  Everyone agreed that it was a disaster.  Dr. Strange was beyond odd.  We had a good laugh reminiscing about the crazy things that had come out of this guy's mouth and his inability to do simple math.  We wondered why we had left there happy and smiling and concluded that it was just so shocking and we had been worn down after 4 hours of waiting.

I'd be a hypocrite if I didn't consider that Dr. Strange may have just been having a particularly hard day and while most doctors would have canceled their patients for the day, he was considerate enough to keep his appointments.  I don't know what the events of Dr. Strange's day were that led up to my experience at that appointment.  I wish Dr. Strange the very best and hold nothing against him.  But the bottom line is that I simply can't trust Dr. Strange with the one aspect of my condition that largely controls my current quality of life.  The day after I saw Dr. Strange I made an appointment with another pain specialist.  I am seeing him this Wednesday.  Fingers crossed that the consult goes much better! 

I thank Dr. Strange for providing me with a good story to tell and I thank my parent’s and Nate for being there with me as my witnesses.  Otherwise I don’t think anyone would believe this craziness!