Wednesday, July 16, 2014

I Am Alive!

I haven't been posting recently about my ECD journey because I am looking for a new teaching job (don't worry I still have my current position I'm just looking for a new challenge). I have been worried that a prospective employer will read my Blog and decide I have way to many issues to take a risk on.

The thing is...I miss talking to you all and the truth is that I don't want to work for someone who would refuse to hire an excellent (though often grammatically challenged) math teacher because they have a rare disease.




So here is my health update. I have been proscribed a drug called Creon (a pancreatic enzyme) to help address my weight loss. I am not taking it! I know. I know. What do I think I am a doctor? The thing is I don't really want to be on a bunch of different medications because who knows what the long-term consequences of taking them for the rest of my life will be. I am hoping that with the right balance of diet and herbal supplements I will be able to hold my current weight. [My weight been stable for 6 weeks.]

I am still taking my daily shot of Kineret. It is annoying to have to tote the shots around with me on vacation and even more annoying to speak with express scripts every 30 days to reorder my prescription, but other then that the shots have become a regular part of my life. One weird side effect is excessive bleeding from the injection site; this seems to occur more often if I leave the shot out at room temperature for more then thirty minutes. I would ask if anyone else was experiencing this but the fact is there are probably only a few dozen of us on the drug…so what’s the point.

When I was at The National Institute of Health Dr. Estrada-Veras suggested I see a hematologist and an immunologist. I got that done yesterday. They suggested I get a blood test to look at my T cells (T cells or T lymphocytes are a type of lymphocyte (itself a type of white blood cell) that play a central role in cell-mediated immunity). Thank God for Wikipedia right! This blood sample is taken and then flown to California for testing, apparently it has to arrive within 24 hours or the test cannot be preformed. So…it is actually my fault that health care costs will be increasing next year.

One last thing. I am going to see Dr. Diamond at Memorial Sloan Kettering next week (He is reviewing all my records and testing to see if I qualify for a drug trial he is running). I’m nervous. You see…I desperately desire to find peace with my diagnosis. Yet so much about my future with ECD feels unresolved and if Dr. Diamond doesn’t figure it out next week it will stay that way.

Not feeling very brave right now.

Sunday, June 8, 2014

Teaching and Stress

I rarely write about my work as a teacher in much detail because I know that many of my co-workers and perhaps my boss read this Blog. My dad (a expert on old sayings) once told me you don't s**t where you eat and so with that in mind I have generally avoided the subject of teaching. However, as the year comes to an end I want to recap a few things and share some stress with the Blog so that I can let it go.

In June of last year I went to NYU for surgery, my boss and co-workers were incredibly supportive. I came back to teaching in September with my own room (my mobility was very limited at the time) and teaching a new subject (Geometry).

I would say it took me a good four months to really get going again. I have found the stress related to teaching this year to be incredibly high. First, I was teaching a new subject. Second, the adjustments needed to meet Danielson requirements took lots of time. Third, I found my self caught up in a cycle of negativity among the staff that really quashed my normally happy spirits.

As the year comes to an end I am still trying to figure out how to deal with the moodiness caused by my low testosterone levels. The thing is it has never been a problem in my classroom but the energy needed to keep it at bay all day has left me with little reserves to deal with workplace drama. This is an issue I haven't really brought up at work but nonetheless they have experienced it.

The funny thing is I feel bad that I have let my boss down and that I haven't been the leader I wanted to be this year, but I'm not sure (given the circumstances) I was capable of anything more this year.


Healing from an injury takes time. Healing from a broken life takes longer. My life was broken in 2013 and its only now that I'm beginning to see what the new Brad will look like.
 


 

Friday, May 30, 2014

So Much

I have been feeling stuck recently when it comes to my health. You see for all intents and purposes I have arrived at a stalemate in my battle with Erdheim Chester Disease.

The thing is it may not really be a permanent stalemate so I have to go get a mri or ct scan or fb scan once every 6 months.  And so now I survive from one 6th month period to the next each time praying that I'll be granted another 6 months until my next exam. 

Meanwhile I am still trying to finish seeing all the doctors that the NIH suggested. 
1. I saw the gastroenterologist who grave me a drug called Creon that was supposed to cure my Pancreatic problems but instead has just caused unnecessary side effects. It was like 8 pills a day (for the rest of my life ) and I just decided I wasn't willing to go down that road. So I am trying to maintain my weight more naturally but I just don't have the appetite except for when it comes to frozen yogurt. 
2. I have an appointment to see an immunologist in June, but I don't trust he'll see my health issues as anything more then a long term consequence of ECD that I am just gong to have to learn to accept. 
3. After that I just have to schedule an appointment with a hematologist.
4. I have an appointment at MSKCC in July (testing me for the B-raf mutation while reviewing my biopsy slides and then having a whole set of scans done) for tests that if confirmed negative will mean I am not eligible to participate in a study at MSKCC that is "curing" people with ECD and the B-raf mutation. Thus ending my hope for a cure (at least currently).

I feel Guilty.
I feel like I should be happy with how well I'm doing but I feel like I'm really just pretending like everything is okay while we all wait for my next health disaster to occur.

This along with all the elements of my real life (as it existed prior to ECD) that draw my time, attention, and energy have left me unable to express my thoughts clearly about how I feel. Tired, Energetic, Blessed, Scared, Tense, Angry, Gracious, and Burnt Out.

My future seems great, it just doesn't feel that way yet. 


Sunday, May 18, 2014

Name


A baby Alpaca is called a Cria, A baby Badger is called a Kit, A baby Grasshopper is a Nymph, and a Baby Ox is called a Stot. What does one call these ridiculously cute guys? Platypus. Yup, that’s is. There is no name for the baby version of the Platypus.

 
They do exist though. They certainly are capable of causing one to feel happy (heck I want to adopt one). If we saw one being abused or killed we would respond with alarm and disgust. Just because something doesn’t have an officially designated name does not mean it is not important, that it does not exist, or that you are crazy for thinking about it.

Every day people all over this world are diagnosed with diseases that have no category in which they can be placed. Erdheim Chester Disease for instance is not defined as cancer or as an autoimmune disorder (even though it carries characteristics of both). So when people ask us what we have we say ECD…but its hard to describe after that.

Names help us categorize things. Names help us group things. Names help us figure out where we belong. I pray every day that soon ECD and all other un slated rare diseases will be given the power of a name. Not just the name of the disease but the name of the family in which their disease belongs, because when one has a family one has understanding, direction, and support.

Thursday, May 15, 2014

Well Enough

I am alive and if being alive is the standard by which we judge our life then I am doing well. 

The thing is I meet people every day who are alive but their lives are not going well. Many of them are isolated and rarely receive visitors while others spend large portions of their day creating drama and fomenting chaos. If that were not bad enough far to many people I know spend all of their time running from one appointment to the next never really enjoying their lives at all. 

They are alive but they are not doing well.   They survive each day but they never really live! 

I want to live boldly!!!

I don't know about you but I have grand dreams for my life. I want to excel at everything I do. I want to be the worlds best husband. I want to get my doctoral degree. I want to be the type of father that raises children who will inspire others. I want to lead my congregation in faith and follow the Lord where He leads me. 

If I could do all these things...it would be amazing. 

But to tell you the truth I would be happy to have just one more day...

...to hug my kids...

...to hold my wife...

...to enjoy the flowers and breath deeply. 


You see one thing I have learned this year is that none of us know how long we are for this earth, so with that in mind I will do my best to squeeze every drop of life out of the time I have and I think that will end up being well enough. 

Friday, May 9, 2014

Spring

Spring brings with it pure sunshine and nourishing rain that will soon turn our neighborhood into a urban oasis. I look forward to the end of dull gray days that end as cold as they started. 

I am also looking forward to my last visit with a new doctor (at least new to me), in June. 

I still have an appointment with Dr. Eli Diamond at Memorial Sloan-Kettering (which will take 2-3 days) and Dr. Carsons at Winthrop University Hospital in June, but there seems to be an end in sight to the constant list of appointments. It's not so much that I mind going to the doctor it's just a lot of work to see a new doctor.

I look forward to someday soon settling into a predictable pattern of check ups with doctors who know me well. Where the hardest question to answer will be, "have there been any changes to your insurance?", or "how have you been feeling?"

Instead of, "we need you to get us the slides that were made of your ECD biopsies", or "could you bring a copy of all the labs you've had done in the last year?", or "we need your families medical history for the last five generations".

These last few visits will hopefully end my time of discovery and help me transition into an era of stability and stagnation (the best I believe I can hope for with ECD at this point). 

We shall see. 



Wednesday, May 7, 2014

MSKCC Dr. Diamond

Memorial Sloan Kettering Cancer Center has a doctor named Dr. Diamond who is doing some work with Erdheim Chester Disease. His group is testing a drug call Vemurafenib that for some people with ECD may end up being a cure. The drug was originally created to treat end stage skin cancer but it turns out that it may also work on ECD patients that are B-Raf enzyme positive. 

Now don't get to excited, I was tested and I am not B-Raf positive (At least we think. It turns out the test may not be that accurate.)

Regardless he is a good resource, is located close to us, and has a certain Rock Star like quality (it's probably the name). 

DawnMarie has wanted me to schedule an appointment to see him ever since we went to the ECD Global Alliance meeting in San Diego. The thing is...I'm boycotting Doctors right now (I need a break from them all). 

I am still trying to sort out the notion that these men and women who go to school for so long and are so smart actually know very little. I guess the best way to put it is that I'm disappointed that they can't cure me. 

So Dr. Rock Star (I mean Diamond) has a new test he's working on that will allow them to check for ECD with just a urine test. This advance would greatly ease the diagnosis of ECD and eliminate the need for invasive surgery. They are asking that people with ECD come help test it out. 

The thing is I'm still childishly holding out for a cure and once I go se Dr. Diamond it over. There is no one left to see. When he confirms I don't have the B-Raf mutation (for a second time) then I'll just have to accept that I have to live with ECD the rest of my life. 

Not ready for that yet.