Wednesday, May 27, 2015

I Have Cancer - Thank YOU Lord!

One of the things I have struggled with the most over the last two years since being diagnosed with ECD is what to call this horrible disease. The rarity of the disease and the general lack of consensus on what exactly the disease is has left me trying to explain to people what I have while having no generally agreed upon term to use.

Then this morning I read this...

Please visits the ECD Global Alliance for more information.

Did you read that!!!, "to classify ECD as a cancer".  Tears stream down my face as I write this...I now know more about my tormentor then I did just 24 hours ago. I also realize how desperately I needed a name for this disease that I will live with...until the day that it takes me from this earth.

Wednesday, October 1, 2014


Just to be clear I was sitting in this chair first! Then Gracie jumped up and got comfortable, leaving me just the front edge of the chair to sit on.

Just like my dog a lot of people in our lives want more. They want more of our time, more of our energy, more of our money, and certainly more of our attention. The obvious response to this problem is to push the dog off the chair...or to just say no!

Here's the thing...all these people that want more from us also flatter us while asking for our time, money, or attention. They say, "I need your help on this project" and we feel wanted. They say, "We would love to have your child be a part of this program" and we feel validated as parents as we write yet another check. They say, "Dad look, look, look, look...." and we feel needed.

All of these things in moderation are good, but sometimes you find yourself sitting on the edge of your chair and it is then when you need to remember to take back some of your life for you. Otherwise you'll soon find yourself falling and I don't know about you but i am finding it harder and harder to get back up.

Thursday, September 18, 2014

Survivabilty Numbers Soar!

Last year in San Diego patients, families, doctors, and other health care providers gathered for the first ever ECD Medical Symposium. One result of this gathering was a consensus paper (written by experts in the field) on ECD. I have included the first and last page of the paper here. Send me a message if you want the whole thing.

 While there is no "cure" in sight the good news is that the five year survival numbers have improved. Plus with a standard now set for treatment and diagnosis other will be able to receive an effective treatment from inexperienced clinicians (inexperienced with ECD) in a more timely manner.

Remember, every day is a gift. So live your life to the fullest.

Tuesday, August 26, 2014

Life Limited

My relationship with food has evolved this year. I have spent much of the last year living in a love hate relationship with food. Learning what can I eat, what should I avoid, and what I can absolutely not have [Buffalo Wild Wings for instance is a really bad idea, but oh so yummy]. 

I can still remember when I took my first trip after being diagnosed with ECD that I had a hard time finding the foods I wanted. I had settled into a pattern of foods I was able to eat (with no negative consequences) and I wanted to exactly reproduce that pattern while on vacation. After visiting 3 grocery stores I came to realize that I was going to have to be more flexible with my eating. Not flexible in the sense that I was going to need to eat foods that were "bad" for me, but flexible in the brands and breadth of foods I considered.

I moved into the dorms at RPTS at the beginning of August (for my D.Min. classes) and then I had the opportunity to explore the area. The facilities are good, food is available (COOP and Trader Joe's), and there are others around who are also dealing with dietary restrictions.

This all helps. What helps more though is that I am learning to accept and live with my new normal.

Accepting our own limitations is rough. No one wants to admit to, let alone restructure their life around, things they can no longer do. Here's the thing, I think my limitations can be either good or bad based on how I perceive them.

So I'm going to do myself a favor and live life as if my limitations are the best thing that ever happened to me.

Monday, August 4, 2014

Big Day

Can't Sleep.

I start my Doctor of Ministry program at Reformed Presbyterian Theological Seminary tomorrow. It is a small class and I am worried that someone is going to ask me a simple question and I will not be able to answer.

My memory has been getting worse. Simple things like remembering where I put my passport (lost it for 2 months), whether or not I paid the mortgage (I did), and why I went into the kitchen have become more difficult.

This morning I couldn't remember who the Apostle Paul was (I couldn't remember his lineage or which epistles were credited to him). How does a pastor forget details about the most important figure in the Apostolic Age? So I'm a little worried that I will go blank and embarrass myself.

I'm also not sure how much I really want to reveal about my story to this new group of people. Were here to learn about Christ, not about me, so perhaps I will keep my health issues to myself (at least for a while).

Sharing is a lot of work and I'm thinking more and more that it might be easier for me and everyone else if they knew as little as possible.

Privacy vs. Advocacy...the struggle!

Super Random Update

The field of medicine for all its advances sure hasn’t made it any easier for us patients to understand what doctors and the labs they use are talking about.

For example I have started to get some test results back from a series of labs I did while at Winthrop Hospital's Hematology and Immunology practice. I don't understand them...but I've gotten them back. We are looking at how my body responds to attacks on the immune system. It clear that I will need to schedule an appointment with the doctor to get the results explained. Sure they send me the results but it’s all written as high and lows with no explanation to what those highs and lows mean.

One advantage to having a rare disease is that until now I could always count one getting quick access to medical professionals. I used to be able to call up and pop in the next day. Unfortunately, the novelty seems to be wearing off and I am going to have to spend some more time waiting in doctor’s offices in the future.

Oh. I had my appointment with Dr. Diamond at MSKCC last week and Dr. Diamond told me I was probably the healthiest ECD patient he had ever seen! I feel like there should be a prize for this fleeting distinction. We did some tests and special stains that I will get the results from as they come in.

After the appointment I had to get blood drawn and I had to wait a long time....almost had a yelling melt down. Luckily DawnMarie was there...she calms me.

Dr. Diamond sent me this email today.
Brad, I meant to write you about your PET scan, this is important. It’s much improved from your prior one. Your initial PET from 2013 showed avid lesions in the abdomen (pancreas and around the aorta), as well as the right tibia. These are all essentially resolved on the current PET.
Now I think this means that what were once active histocyte cells (caused by Erdheim Chester Disease) are now just dead "scar tissue" which is why they showed no uptake on the PET Scan. This is good news. I think.

I continue to work on my nerves/anger/emotional outbursts. I'm not sure what causes me to flip out but I suspect it’s related to the disease process, or perhaps I'm just being a petulant child.

I am in Pittsburgh for the next two weeks by myself (I am starting graduate classes). I haven't been alone for more then a few hours since I first started to get wish me the best. 

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 prescribed 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.