Resolution #2

I* resolve to raise $5,000 towards finding a cure for ECD in 2014. Please feel free to add the ECD Global Alliance to your list of charities for the coming year. 

From our family to yours...Happy 2014!

Honestly I feel lucky just to be alive in 2014 but I am hoping with advances in research and faith in a very Big God that there might be many New Years in the future for me and my family. 

In 2014 the ECD Global Alliance is planning to award at least two research grants, not to exceed a total of $100,000. Listen...the ECD Global Alliance is not some large impersonal 501(c)(3) organization. We are a small 501 (c)(3) organization run on a shoestring (using volunteers and donations from those suffering with ECD, their families, and friends). So that means if we are going to fund research then we need to help raise the money to make it happen.

DawnMarie and I had planned on raising 5% of the money the organization was going to spend on research in 2014, thinking it was going to be another $50,000 grant this year (that would have been $2,500). Well it turns out we will be giving out $100,000 in research grants in 2014! SO...now we need to raise $5,000 for ECD research. WOW!!!!

Past research grants have gone towards...

2011 -  To better define the micro environment inside ECD lesions and to evaluate the possibility of using specific drugs, already available for human usage, as a means to find new therapeutic options for the disease.

2012 - To derive a screening & diagnostic test for ECD that would rely on blood sampling without the need for a biopsy.

2013 - To identify recurrent somatic genetic events in addition to BRAFV600E mutations in patients with ECD. To identify cell of origin in ECD. To identify the optimal targeted therapy in histiocytic disorder patients with mutations activating kinase signaling.

Have you ever wished you could change the world? Well for those suffering from the family of histocyte disorders you can. Current research in this field is changing the life expectancy of those diagnosed with ECD as we speak. Just a few years ago if you were diagnosed with this disease you were given less then 5 years to live, now with current treatment options many people live much longer lives (quality of living though still remains a stubborn issue we need to address).

So in 2014 I am going to work towards finding a cure, one dollar at a time. Interested in joining me?

Here’s how you can help…Support Alyssa, Isabella, and DawnMarie as they run the Spartan Race on May 31, 2014 in Upstate New York. Donations can be made directly online at the following (link).

*Of course "I" means DawnMarie and I, have you decided on a realistic resolution for yourself for 2014? It is time to make a commitment that could change your life!

Resolution #1

*I resolve to spend more time with my wife this year. Gentlemen, feel free to copy me on this one.

I would be in a world of hurt if it weren't for my wife. She doesn't realize it but she makes my life possible. Just the other day she said she doesn't see herself as a caregiver (while she was working on cooking whole food in the kitchen for 4 hours because of changes I need to make in my diet). She may not be a "caregiver" but her caring for me is what has kept me going this year.

She is making this homemade Minestrone soup today.

DawnMarie has spent 2013 on the same health care roller coaster I have been on except worse because she has had to deal with me. She has been there from the beginning when we thought I might have pancreatic cancer to now...where we know I have ECD but we don't know if the treatment is working. She has watched me lose 110 lbs. first with envy and now with some fear. She empathizes with me when I am in pain and ignores my outbursts born of frustration and anger.

She rides with me to doctors appointments in Maryland and Connecticut, chatting to keep my mind off of the likely disappointment and then sits silently as we return because I am to depressed to speak. She hugs me when I am sad and answers all the health care correspondence that drives me crazy (my own medical billing expert). In short...she is amazing!

DawnMarie deserves more of my time and attention (positive happy time) then I give her. So in 2014 I resolve to spend quality time with her at least once a week. No Kids!

*Have you decided on a realistic resolution for 2014? One day left to make a commitment that could change your life!

Resolute Resolution

You know the nice thing about New Year's resolutions is that they are easy to make and even easier to break. The best part may be that no one expects you to keep them so the only person you're really letting down when you give up going to the gym in February or start scarfing down Nutella again on January 5th is yourself. The thing is...aren't you tired of letting yourself down every year?

So why aren't we successful? Why do we fail to do things that we know will improve the quality of our lives? I think the problem is the way in which we go about making our New Year's resolutions. We often make them on the whim at a party just minutes before the clock strikes midnight (and lets be honest there is often alcohol involved). We also tend to choose far to many resolutions to reasonably tackle at one time.

Not surprisingly, the New Year's resolutions that are most likely to succeed are the ones that mean something to you and come from a place of passion—not the ones someone else says you should do. For example, making a resolution to swim daily because it's something you've always thought was relaxing and wanted to be able to do is going to be a lot more motivating than deciding to lose 10 pounds because your spouse or doctor told you to (shame on them by the way).

So make sure your resolution comes from within. Perhaps you want to improve your health or strive to be a better parent? Maybe you want to work on being a better friend or just being focused when your at the office (i.e. playing less Candy Crush on company time). Perhaps you want to consider more external changes in your life, the ways that you can make a difference through activism, awareness raising, or promoting a cause.Whatever your goal is for 2014 chose wisely then hold your self accountable by sharing your goal with others.

For 2014 resolve to keep your resolutions, why miss the opportunity to change your life! You have about 2 days left to choose so start thinking...and choose wisely.

*I am going to post my two resolutions for 2014 over the next two days, feel free to add yours in the comment section.

Anti-Inflammatory Diet

I find my self very overwhelmed by the changes in diet suggested by the ND (Natural Doctor). It is not simple to eat whole foods all the time for every meal. She believes eating a whole foods diet heavy in anti-inflammatory foods will help me. This morning I was supposed to give up egg beaters and just have real egg whites along with an Ezekiel English muffin. Well...there was an incident with the egg separator and the garbage that involved lots of yelling (by me) and just left me angry and frustrated. Honestly, I just don't deal well with change.

It has been a hard week. I started the week out with severe hand and arm pain, which put a real hamper on my Christmas Eve preparations. For Christmas Eve dinner I was very good with my food (eating only things I had eaten before...except for this one tomato sauce and fish dish that looked amazing) but I still had horrible stomach pains. DawnMarie and I went to Manhattan with the kids to see a show at Radio City Music Hall on Thursday, which was exhausting. Then yesterday I spent 3 hours in the car going to see the ND, I need a car pillow because my butt just can't take the drive anymore. 

Now I find myself facing this stack of food suggestions that are all anti-inflammatory in nature and I know this change would be good for me but I also realize that if we go down this road there will be no turning back. I don't want to have to eat like a crunchy granola (that's what they call hippies out here on the east coast). Not sure if I can handle the commitment this food change will make and the time it will require. It essentially calls us to make everything from scratch and quadruple our intake of fresh vegetables.

I want to go eat at Five Guy's, Red Robin, and Trattoria Lucia. I want to stop at 7-11 for a slurpee and pick up ice cream at Dairy Queen.  I want to just be normal.

Thankful - Wife

All week I am going to be highlighting what I am thankful for in my life (in light of Christmas it just seems wrong to do otherwise).

DawnMarie and I just got back from seeing the Dr. of Natural Medicine in Connecticut. The Dr. spent 3 hours with us hearing about my issues and then talking us through a plan to start addressing those issues. Listen, I think this whole "natural" medicine things is crap (sorry if you find my use of language offensive), but the fact of the matter is I have no options left. I am desperate and so where "regular" medicine has failed to address my health issues I am hoping that Dr. Zigo can help me navigate my way back to a healthier life.

Her suggestions start with a long list of anti inflammatory foods, a pro-biotic, magnesium supplement, and using our Vitamix (Thank You Gloria for the gift).

What this will take though is a lot of work. Eating all fresh whole foods is going to take a big commitment, which I find a little overwhelming, but DawnMarie is excited. She is very supportive.

DawnMarie has supported me with trips to the doctor (lots and lots of trips), during tests, after surgery, through crazy mood swings, and particularly when I am sad. At this point the future is uncertain, the path ahead is uncharted territory. I know this though...my amazing wife will walk with me through it all. From raising funds for ECD research to learning how to use the Vitamix (which is no small task that thing is a monster) I know I can count on her.

I hope you are all lucky enough to have someone like her in your life.

Thankful - Wonderful Distractions

All week I am going to be highlighting what I am thankful for in my life (in light of Christmas it just seems wrong to do otherwise).

 Life and the things happening with it can sometimes just get to be to much. When this happens there is nothing better then a wonderful distraction. 

One of my favorite distraction of all year is a acquaintance I follow on Tumblr. Her Tumblr account Korean General Store says, "The only thing Korean about this page is me. The rest is filled with randomness I find on the web. These wares represent the things I find most worthy. Welcome to the Korean General Store." Her collection of random, intellectually stimulating, and sometimes just plain odd items are always entertaining. (Link)

Gavin Aung Than is a freelance cartoonist who runs a website called Zen Pencils. What Gavin does is take quotes from famous people and make them into cartoons. I have to warn you, their deep. Check out his work when you have some time and are in the mood to be inspired. (Link)

I come to these sites when the weight of the world is just a little to much and I need a break from it all. I hope you'll find them to be the same wonderful retreat I have this year. 

Thankful - Christmas Eve 2013

All week I am going to be highlighting what I am thankful for in my life (in light of Christmas it just seems wrong to do otherwise).

In this weeks Christmas Eve Sermon I highlighted a few of the things I am thankful for this year (my family, neighbors, and friends just to mention a few). I also discuss what a large role God has played in helping to maintain and sustain me throughout what has been a very difficult year. Honestly seeing myself on video normally freaks me out and makes it impossible for me to really "hear" myself, but this time I enjoyed the sermon (I hope you do to).

Link found here

Thankful - Wife's Ex's Family

All week I am going to be highlighting what I am thankful for in my life (in light of Christmas it just seems wrong to do otherwise).

I am thankful for my Wife's Ex's family - now that is a mouthful right! It turns out that my wife was married to a guy named Rick and then they got divorced before we met (just wanted to establish the time line so that no one starts thinking something funny was going on). 

Rick's family has always been very accepting of me, which I have always found a little surprising. I mean it is a little awkward, but they have never acted that way. Until recently the best part of our relationship was the way in which Rick's parents, Ceil and Rich, have accepted my children. Ceil always has a treat in her bag (or the candy drawer at her home) for the kids and Rich always has energy to entertain Bradley and Keegan. 

Are there problems between DawnMarie and Rick? Sure their divorced for a reason, but they are the healthiest divorced couple I know. They both regularly set aside their differences for the sake of our odd extended family (thank you DawnMarie and Rick). 

When I first realized that there was something wrong with me I can remember very clearly sitting in the car at one of Isabella's soccer games feeling down on myself (at that time we were waiting to find out if I had Pancreatic cancer). At some point I decided to stop moping, but still an emotional wreck made my way to the field. First person I see is Rich, who hugs me and cries...I lost it.

What a great guy. I mean I have an awesome father but Rich is certainly in my top five when it comes to men I respect (he has a presence about himself that just lets you know he cares).

They have continued to be supportive of DawnMarie and I as we go on this crazy journey together and so for that I am thankful. 

Keep up the good work Macher Family and may God Bless you in the coming year, as much as you have blessed me this year. 

Thankful - Music

All week I am going to be highlighting what I am thankful for in my life (in light of Christmas it just seems wrong to do otherwise). 

I would like to start the week by expressing my thankfulness for beautiful music. I think I came to really appreciate music's ability to lift my spirit while attending Mountain View Church in Tumwater, WA. when I was a teen. This year music has been my lifeline as I have struggled with the changes that have come. Below are my two favorite songs from this year.

Matthew West and Forgiveness Below or Here



A Bunch of HS kids singing the Cup Song in Gaelic. Below or Here

It strikes me that so often we choose to live our lives in isolation from the world and community around us. We hide from the world in our churches, our homes, and our insulated groups of friends, but we are called to so much more then that! Your life can have meaning beyond anything you have imagined, but you must first be willing to embrace your neighbor with openness despite your differences (cultural and political), share your faults with the world while seeking forgiveness, and be willing to cry with joy over the beauty found every day in the lives of others.

Make a Joyful Noise in 2014!

House - Episode 17 (Season 2): "All In"

For all next weeks I am going to be focusing on what I am thankful for about life. It just seems wrong to gripe or complain during Christmas week so you will all get a break from my whining.Today though I am going to talk about something ironically funny, the TV show House.

One of the things that is difficult about having a rare disease is there just isn't very much information out there about your disease. With this in mind DawnMarie and I have spent a lot of time digging up all the relevant research papers and abstracts that apply to ECD or similar Histocyte disorders (there are very few and their sample size is often very small, 2-3 people). We also bring with us a list of questions, many of them medical in nature, with us when we visit our doctor.

This means I am pretty well informed about ECD. It shocks me sometimes how uniformed some people with ECD are about their own disease. They often don't know about the treatment options that exist, who the doctors are that have experience with this disease, or what even the manifestation of ECD they have is really called. Its quite shocking actually.

So it turns out there is an Episode of House where this disease is addressed. DawnMarie mentioned it to me but said I had to see it if I wanted to know how it turned out. Well I'm stubborn and not really watching TV so I looked it up, the lady dies! ROFLMBO (for those people who don't know this means Rolling On The Floor Laughing My Butt Off). Luckily it is a flashback episode so the second case he sees of ECD he saves the person at the last second. The episode gets good reviews so if your a House fan check it out!

I want to make a T-shirt that says.... so Rare even Dr. House Can't Save Your Life.

I feel like there is some prestige that comes with having a rare disease that stumps Dr. House. Yes I know its just a TV show and everything about it is fake but for some reason it makes me feel proud.
Well there you go my last depressing post for a week. I hope you and yours have a very Merry Christmas. 

Doldrums

I feel like I am in the middle of the health doldrums. The "Doldrums" (I'm telling you this because I'm guessing that most of you aren't giant nautical fiction reading nerds like me and might not know) are roughly located along the Equator and the term doldrums refers to a zone where prevailing winds cannot be counted on. A sailing ship coming through this region can be trapped there for a few days or weeks. So as boats left their ports in the north they would often find themselves hitting the doldrums half way to their destination in either South America or Africa.

What this could mean for the average sail powered boat is days to weeks with little forward movement, which is troubling when the water and food you have to eat are limited.

I feel like I am in the doldrums. I have a diagnosis but no cure in sight. I am on a treatment regiment but won't know if it is working until late February. Meanwhile my reserves are slowly depleting, lab results get worse each month, and I'm taking more pain meds each week. Plus the weight keeps coming off and my energy level decreases weekly. Today I slept until 9am and then fell asleep again at 11am, it took me almost 30 minutes to summon the energy just to sit up on the couch!

When ships in the doldrums got really desperate they would put men in rowboats attached to the ship by rope and have them pull the ship forward as they rowed, generally speaking it was wated energy but the movement gave the men hope.

I sometimes wonder if running around to all these doctors at JHU, NYU, and Sloan Kettering isn't just wasted energy spent looking for hope. 

I know this for sure. I am loved. I have impacted this world in a positive way. I will continue to fight until the wind picks up again. 

Best Worst Day Ever

I am not feeling well today, my stomach is hurting me and I am weak. On the way into work I thought to myself, "this is going to be the worst day ever." I am not sure why I am feeling this way but it has been a long week and there are a few people ill at the house so....those could all be factors or not. I think this is one of the things that's really driving me crazy right now is not knowing the why behind how I feel other than to say, in a very vague way, it must be the ECD.

So I was feeling down when I cam into work today and this is what I saw when I walked up to my classroom.

Yesterday I wrote that I wasn't going to be decorating my door (Less Is More?) because I just didn't have it in me to do the extra work and who do I find but Ms. Wang, Ms. Ungar, Ms. Ciarniello, Ms. Bender, Ms. Cuomo (please forgive me if I left anyone else out) all decorating my door. It lights up and looks like a snow globe (it is so beautiful it almost made me cry)! I was literally speechless and if you know me you know that I am rarely without something to say. They even included each of my advisory students names to personalize it.


What can I say...when we are weak we create opportunities for others to show their love, care, and concern for us. When I share my burden with you, with the world, I create the opportunity for others to let their best self shine. I know this and yet I am constantly surprised by how amazing the people around me are. It is humbling to be taken care of by others but I want to be genuine with those around me so I am learning how to be accepting and gracious.

This group of people I work with (teachers and administration) are amazing. I never would have know just how amazing if I hadn't taken the risk of sharing my life with them.

Thank You All, and may you have a very Merry Christmas.

Less is More?

I have done a very good job this year of cutting out the extra things I would normally do so that my work load will match my energy level. I have given up being an Adjunct Professor at LaGuardia Community College (which was just for my ego anyway), passed on being Team Leader at Queens Collegiate, stopped trying to be the handyman at home, and given up the role of go to guy at church (from taking out the trash to replacing light bulbs I was your man).

With my family I have had to cut back on going to every single soccer game, school event, and social get together. This has been hard to do because in doing so I have had to give up some of the control that came with being involved with everything (well almost everything). Luckily I have had a great group of friends, co-workers, church family, and spouse there to help me out. I honestly would not have made it through this year without them.

Sometimes though its hard...not being able to do what you once did. This week for instance we had a door decorating contest at the school. Here are two of the doors on the same floor as my classroom.

Here is my door.

My door is stile bare because I didn't participate. I know it is just a door but I decided not to do it because I am already feeling tired and I know I couldn't just sort of decorate the door. Ultimately, If I had started decorating I probably would have gone crazy trying to "win". This year though I think I win for knowing where to set my limits and not trying to do just one more thing, but I still feel guilty about the boring door.

I think for me that blank door is a sign of how much I have grown this year, and my guilt is a reminder of how far I have to go. You know that saying less is more, will sometimes it just feels like less. 

Christmas Light

We all know that given the right amount of time, money, and talent one can do some pretty amazing things with Christmas lights. You can even turn your home into a annual stop on the local best decorated Christmas lights circuit. I for one have never taken my home decorating that far, but ever since I was a child I have loved Christmas lights. In fact I can still remember being mesmerized by the Christmas light display put on by our local zoo during the holidays.

So this is our first year decorating the new house for the holidays and when I wrapped the bushes in front of the house with lights I was left with something very nice, but when it snowed I got this (picture below). Turns out that Christmas lights when magnified by the snow have the potential to create beautiful scenes beyond what we could have originally imagined when we first pulled them out of their box.

We to have more potential then we give ourselves credit for. Just like the Christmas lights we're okay on our own (fresh out of the box), but when magnified by Christ our love, service, and care for others becomes more beautiful then we could ever have accomplished on our own.

Who is Rabindranath Tagore?

I have recently been switched to a new pain medicine which is called Tramadol. I took it last night to dull a bout of pain I was having so I could go to sleep, but then a few hours later my eyes opened and I was wide awake (12:30-4:30 am). I have been noticing that when I take it (which is as little as possible) there are some odd side effects. So last night while I was fighting insomnia I looked the drug up and checked out its common adverse effects. The side effects that I am experiencing from this drug that have been noted in the clinical abstract are pruritus (itchness), sleep disturbance, and dizziness. 

Does this make me MAD??? You would think that it would right? No sleep while being itchy and dizzy. Turns out another common side effect is excessive euphoria! Coincidence? Accident? I think not! (Just in case you are wondering paranoia is not a common side effect)

Funny thing is I feel pretty lucky. Just a few months ago I had no pain medicine and no idea what was going on with my body. I would spend all night sleeping in the bathtub because the heat was the only thing that soothed the pain. There are still lots of questions to be answered but I know a lot more then I did in April when this all started.

Rabindranath became the first non-European to win the Nobel Prize in Literature in 1913.

Before ECD I used to think that "bad" things happened to me. That it was the dark clouds of misfortune that ruined my day, a lesson at school, or a family outing. Recently though I came across the writings of Rabindranath Tagore a Bengali poet and Nobel Prize winner whose words I have found much solace in. Rabindranath says of those who have lived through the trials of life, "Clouds come floating into our life, no longer to carry rain or usher storms, but to add color to the sunset sky."

When dealing with the trials of life it sure helps to have a little bit of perspective.

Keep Dreaming

In 1908 when John Lewis Childs helped Floral Park become an incorporated Village he had big dreams for the Village and his business. In his lifetime the area became famous for its production of seeds and bulbs, which were distributed worldwide. The sheer volume of seed sales coming from this area caused the Floral Park post office to grow to a size commensurate with the post office locations in Baltimore and Boston.

The Cover to one of his Seed Magazines

With the death of Childs in 1921 family took over the business and then during the great depression it all fell apart and so to died the dream. You see without John Lewis Childs as its guiding force the company would not continue, eventually all his holdings and property (over 200 acres) were sold.

John Lewis Childs had failed to create the empire he had hoped for...but in its place was left land for a wonderful community to be born. In the place of flower beds came families, schools, and parks.

In 2013 DawnMarie and I purchased a wonderful old home (that needed lots of work) in the Village of Floral Park. The community is wonderful, the people are welcoming, and I finally felt at home in the North East. We like John Lewis Childs also had great dreams for what this place would be. With plans for an extension and lots of work to be done things were progressing well, then I got sick.

It would be sad if it weren't for the fact that here in Floral Park I have three neighbors who have survived personal illnesses, a family who has more experience with grief then I will ever hopefully know, and a group of friends who have been incredibly welcoming and supportive of my wife. 

Have you ever noticed that our dreams are just a blueprint, a work in progress. The fact is that we can't always see what the finished product will be but that doesn't mean we should ever stop dreaming because our dreams unfulfilled are often the stepping stones to something much greater then we could have ever imagined.  

Keep Dreaming.

Forgiveness

Forgiveness is an amazing thing isn't it. It often comes at the most unexpected times and is never deserved but has the power to change everything.

I was forgiven yesterday for being a horrible friend. This person certainly did not owe me anything and yet they reached out (which is always a risky proposition) and communicated with me. Funny thing is that I feel worse now then I did before because it is so obvious to me how much I have hurt him and how much was lost. 

Best group of guys I have ever met. That's me in red.

When I got sick and went though surgery I did a survey of my life and realized that I had cut off connections in my life every time I made a major transition. I had in fact not maintained any relationships that were from prior to my marriage. Thinking back I am sure I had lots of reasons for doing this (none of them good), so when I was laying on the couch recovering from surgery I reached out.

I sent messages to both my HS best friend and my Best Man (a great friend from Seminary).

As of yesterday they have both forgiven me...but have you ever noticed that being forgiven doesn't always make you feel better?

Last night I reflected on how much I had gained from the friendship I once had with my Best Man. He was my roommate in Seminary and made me part of his family (which was huge since i was so far from home), he taught me how to survive the style and social circles of the North East, showed me how to make a gourmet meal on a budget, how to host a party, even helped me learn how to dress up (people from Washington rarely have the need). In many ways he was the older brother I never had.

We also had a great time at the D-Bar, hanging out at Charlie Browns, relaxing in Old Forge, praying together with the prayer group, surviving a stalker, and learning about the physical consequences of bowling in a bathroom (very funny story). I am sure Seminary would have been horribly boring without him as a friend.

I am not the person I once was prior to being diagnosed with ECD (I was much more egotistical, judgmental, and indifferent). This disease has changed me, but I will still have to live with all the things I did prior to getting sick. Yes I am forgiven by the grace of God and by some very amazing people, but I must still live with the hurt I have caused (which makes me sad, not for myself really but for the people i have failed).

I promise this though...

If you are my friend I will cherish every moment with you. Need help moving? Call me (I'll make lunch, I can't really lift anything). Want to get together for coffee? I will clear my schedule and drive 100 miles to meet you. Need help babysitting? I am available.  Need to share your burdens? I will help hold them for you. Want to talk? I'm here to listen.

Will this fix everything? No, but its a start.


P.S. Thank you Dave for the photo, it brought back some great memories.

Taking a Break / Naturopath

Followed my doctors advice and popped a few pain pills then went out to eat with my wife, her favorite Italian restaurant. I had a nice piece of fish and some broccoli, funny thing is I could have had pasta or fries for free but vegetables were an up charge (and yet we wonder why so many Americans are overweight).

Cara Mia

My life is good! I have a wonderful family (loving wife, great kids, supportive parents and caring in-laws). I do have some new physical limitations that I have not yet come to terms with but overall things are okay. Health wise I am waiting for the results of a chest x-ray, ultrasound, and blood work I did this week. In the near future I have a appointment scheduled with a Naturopathic doctor and a trip scheduled to the NIH in February. 

I'm going to see a Naturopath...crazy!!! You know your desperate when as a very conservative structured person someone says you should try a Naturopath and you say sure. But... if in January I start dressing like this and stop wearing shoes I need you all to rescue me from the cult. 

Vacination Dilemma

When I checked in for a recent visit with my primary care physician they were giving out sheets explaining why we should all get our flu shots. I have never fallen into a category where having a flu shot was indicated (normally they suggest children and older adults). I asked if there was any way for me to take one because the Kineret shots makes me immunocompromised. Turns out that my body's white blood cell count is so low that it would be unsafe to take a live vaccine and not worth while to take a inactivated (dead) vaccine.

This led to a general discussion about how to stay healthy during flu season. Dr. Klapholz says, "I should limit my exposure to sick people and children." OMG!!! When I got done laughing I had to remind him that I am a teacher (140 kids per day), I am a Pastor (65 people every sunday, hand shaking), and I have four kids. I did the math and this means that I am exposed to like a zillion peoples germs every week (pardon my slight exageration).

So here is the point. I can't get vaccinated and no one in my house can get vaccinated with any live vaccines. This means the MMR, Polio, Small Pox, Chicken Pox, etc...are all off limits for now. So we need your help. We need you to get vaccinated so that you can help protect us. I know there is lots of drama out there about the MMR and some of the other newer vaccines, but the tried and true ones are a smart choice for you, your children, and all us immunocompromised wussies out there. 

Think about it, your flu shot could end up saving my life. I'll just say thanks in advance, I owe you!

The Truth - Day 3

Weariness does not equate to a lack of faith...just in case you were wondering.  Am I particularly discouraged at this point in the journey? Yes. Have I hopes unfulfilled of finding a cure and returning to my "semi normal" life? Yes. None of my struggles with the disease though have caused me to question my relationship with God. As a Pastor I think people expect me to be cheerful and happy in all things and normally I am, but this doesn't mean that I don't struggle with the events of life.

The book of James which has developed a reputation for providing practical advice for Christians says in Chapter 1 Verse 12, "Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him." 

 I realize that this is a trial and that once I have passed through it I will be able to understand it's significance in my life more clearly. I have just to look at all those I know who have battled Cancer gracefully to know that the future, whatever that may mean for me will be well worth the fight to get there.

The mountaintop is hard to see from its base, but I have just to look at my beautiful children to know that the view from there will be glorious. What I need now is a plan that lets me look past my current struggles and helps me focus on the mountaintop.

The Truth - Day 2

The Journey continues and where it will take me I do not know. That's the problem with this whole ECD thing...I don't know where it is going to take me (the fact is no one knows).

You know when you go hiking even the largest elevation gain of the day and all the pain that comes with it is tempered some by the possibility of what lies ahead. Perhaps its a beautiful flat meadow, a picturesque view of the Cascades, or a wonderful campsite to rest ones weary feet.

I lack that view of the future right now. I am so caught up in surviving the moment that I can't imagine anything positive waiting for me at the top of this hill.

So what do you do when the climb never seems to end? How do you maintain hope when you have no understanding of how long you have to last until that flat meadow comes?

I am tired, I feel weak, and I can only see the the mountains rising around me on all sides. How much longer do I have before I can rest my weary feet?

The Truth

They say the truth will set you free ... but from what?

DawnMarie and I went into Manhattan today to see a gastroenterology and nutrition specialist at Sloan-Kettering Cancer Center (SKCC). I made the appointment because my weight is still decreasing and I'm scared of what the consequences of the decrease will be. The day started out rough because I took some pain medicine yesterday and it gave me insomnia (it usually does), which means I only got three hours of sleep last night (by the way I hate taking pain medicine).

The train ride into Manhattan was filled with anticipation and as we approached the East River Tunnel it began to snow. We emerged from the labyrinth of corridors that make up Penn Station onto the corner of 7th and 32nd to visions of a snowy wonderland, a wonderland in which we had a mission. First, pick up copies of my August MRI from NYU Langone ($50). Second, head over to SKCC. Third, pick up Keegan an American Girl Doll, I know it is a little extravagant but I was feeling hope filled and generous. Fourth, go home with a plan on how to move forward.

Turns out the snow was only pretty from the train and once we had walked to NYU I was cold and starting to get wet (clearly that walk will have to be reserved for sunny summer days). We picked up the MRI Cd's and caught a cab, by hailing it like they do in the movies...that was pretty cool! After going through the requisite insurance paperwork we spent an hour relaxing in the cafeteria before going to the appointment and meeting with one of Dr. Mendelsohn's partners who spent an hour with us going through my history, my labs, my scans, my pain, and doing an exam.

Then came the specialist who entered the room looking focused, like she was about to give me bad news. And it was bad news. It is her opinion that the pain I am experiencing is not pancreatic in nature and is instead the ECD, which is somehow being exacerbated by eating.

Solution suggested, "try taking the pain medicine all day and see if that helps". Are you kidding me!!!! I am 37 years old, I can't be in pain the rest of my life every time I eat! Needless to say I did not stop to get a doll. DawnMarie wanted to talk with me after the appointment but I just wanted to go home.

Hopes dashed. Solution unacceptable. Truth sucks. 

Sloan-Kettering Visit

So tomorrow I am heading into Manhattan to go to Memorial Sloan-Kettering to see a Pancreatic and Nutrition expert. The doctors name is Robin Mendelsohn,  she specializes in taking care of high risk cancer patients and specialized nutritional support for cancer patients. Erdheim Chester disease is not technically cancer but histiocytes do multiply and spread with the ferocity associated with an aggressive cancer and as the disease progresses, manifestations can be found in the nervous system, eyes, pulmonary system, heart, lymph nodes and kidneys.

So anyway I talked them into seeing me...with a inch think packet of doctors reports, lab reports, and Cd's of lots of tests. Plus a very serious plea that they see me soon because my weight loss is continuing (down now to 151). My appointment is tomorrow and I was going to go by myself but then DawnMarie saw the doctor.

Dr Robin Mendelsohn

So now she is going with me. Which is good because it always nice to have support at the doctors office, lol. But seriously...Sloan-Kettering also has a team of scientists that were awarded a grant from The Erdheim Chester Disease Global Alliance to do more research that will hopefully someday lead to a cure. I am hoping that Dr. Mendelsohn in collaboration with that team will end up being my support team here in NY.

If we don't get answers tomorrow then maybe we will at least start getting some of the right questions.

Treating The Staff

I just got done purchasing and sending out my Christmas order from Golden State Fruit, a California company that specializes in baskets of fruit and nuts.  I love these guys (they are not paying me to say this) because their stuff is so tasty and fresh. Last order was during cherry season and I got fresh cherries and nuts sent...the reaction was phenomenal! This Christmas its going to be dried fruit and nuts, yummy.

Golden State Fruit

It is important that this gift be "healthy" because I have noticed over time that the places I send them tend to be inundated with sugary snacks and I want to make sure that my treats are noticed for the right reasons. So where do they go? Doctor's Offices.

I want you to know that the most important person in the Doctor's office is not the Doctor. I know the place is called the Doctor's Office and therfore it seems like it must belong to the Doctor but all the Doctor does is pop their head in the room when they are told your ready.

The front desk or back room staff are the ones who sets your appointment, and if you make them mad good luck getting in when wanted, good luck getting your fax done quickly, good luck getting your scans back when you need them. I'm not saying the staff is negligent in doing their duties, but there are certainly favorites in the office and I aim to be one of the favorites.

Then there are the Physician Assistants and Nurses, please keep this group happy. When you need a change to your prescription its them who will be taking care of it. When someone has to fight with the insurance company to get approval for your $14,000 scan its not the doctor who is going to be waiting on hold! When your records are being updated in EPIC (one of the things mandated by the health care reform law) and everything is updating wrong, its not the Doctor whose going to make sure your vital information is accurate.

The fact is I only see the staff at the office every once in a while, but when I need them....it is an EMERGENCY!!! So I lay some seeds of healthy good will, what could it hurt.

We could probably all benefit from doing this...sowing some seeds of good will. In our homes with our family, in our community with our neighbors, and in our missions to the world. That's a lot of fruit and nut trays right! Perhaps you can find another way to reach out and some some seeds of good will this Christmas Season, good luck and Merry Christmas.

Pain Chart

I hate the following question, "How would you rate your pain on a scale of 1-10." I just find the whole concept of ranking pain to be a very inaccurate process.

For instance there is no norming on what each level of pain means ("norming" is just teacher talk for standardization). I for one believe that level 1 is reserved for things like paper cuts and scratches, while level 10 is saved for physical torture. With this in mind, when I am having a very bad pain day I would self describe myself as a 4.

Saying you are having level 4 pain though gets no response from a doctor or nurse...ever! DawnMarie says that I should raise my number to a 6 or 7 but I don't like artificially inflating the scale. The reason why is that some day I might be having level 7 pain and I don't want to receive the same treatment I got for what was really level 4 pain. Psychotic I know!

So here is my idea, a machine that helps you rate the level of your pain. Adults, here is how your kid is going to become a famous billionaire. What we need is a device that gauges your pain through the monitoring of muscle or neural response. I think a good name for the machine would be the "now we don't have to ask what your pain level is any more like a bunch of morons", but perhaps that's a little to long. 

The gift of Pain

I was talking with someone recently about pain. They had been through a traumatic event and have been experiencing a lot of physical pain. During the course of our conversation the person minimized their own pain saying, "it's not as bad as what your experiencing but...".

Do you know what is so predictably universal about pain?

No matter who you are (how rich, how smart, how well connected) or what the cause is of your pain is (back, bone, muscle, arthritis) it hurts. Pain can prevent you from moving, it can steal your appetite, make you angry, and rob you of your joy.

I don't care who you are, if your experiencing pain then you are experiencing what I experience. Perhaps to a different degree, but its not like I say my bone pain is really bad today and you have know idea what pain is.

Pain is a burden, right! It can prevent us from being and doing all that we hope and desire. Pain is also a gift though, because it helps us understand the plight of everyone else who has ever been in pain. So yes you may not know what bone pain feels like, but because you understand what pain is you can walk with me on this journey.

And I with you.

Sending out Christmas Cards

One of my favorite holiday traditions is sending out Christmas cards (and I want to make sure you understand that when I say sending out Christmas cards I mean DawnMarie sending out Christmas cards). 

I love reaching out to people even if it is only once a year in the form of a card. I know some folks are tempted to skip the whole thing, and I can understand why, It saves times during an already-busy season, it saves money on printing and postage, and we’re all in regular contact with one another anyway thanks to social media.

However, as the self appointed champion of Christmas cards, I’m here to convince you that it’s still worth the time and effort. I believe that it will bless you and bless others to keep this time-honored ritual going, and here’s why:

1.) It reminds you that your circles of connection don't end at your front door, or on FB for that matter.

2.) It allows you to check in once a year with everyone.

3.) Receiving cards in return (for those who reciprocate) is a fun way to peak in on the lives of your family and friends (we all tend to highlight what we care about the most in our cards).

4.) It gives you an opportunity to laugh (those funny newsletters and cards filled with your single friends dogs are to die for funny).

5.) It's Christmas and reminding people that we care for them and love them (as proven by the fact that we were willing to spend 46 cents and the cost of a card on them) is a good thing.  

If you want a card from my family email me at bradleycrump2@gmail.com with your address and I will drop one in the mail for you (and when I say I, of course I mean DawnMarie). Who knows you may get hooked on this wonderful holiday tradition.

Lesson Learned

It is fair to say that in the past i ate like a glutton. In fact every time I think of my prior eating habits I shudder at the obnoxious pride I took in my over consumption. Unfortunately I am not the only one who falls into this category by a long shot, in fact more Americans are obese (having a BMI of 30 or higher) then any other nation in the world.

Just to put things in perspective, my current weight is 152. The "normal" range for my height is between 143-172. With a weight of 152, over 97 percent of men in the world who are my same height weigh more then me.

Now don't get me wrong I'm not railing against you to stop eating out or enjoying your favorite treats. In fact this isn't about you...shocking I know.

I wanted to say this. I feel like I am being taught a lesson about life through all this. What once made me happy, what I used to travel great distances to try, what made me love holidays, no longer brings joy. Food, in all its glory of succulent love, soulful flavor, and sweet memories is now my cross to bear. Food has become a job, a task, a burden.

What an interesting turn of event. Turns out anything when taken to an extreme can become a vice even food and everything even something we formerly loved can become our cross to bare. 

Spleen There

I am feeling much better today after eating 1800 calories yesterday, the most calories I have eaten in a single day in months. I felt like I was eating constantly, all day long munching...but the alternative isn't great so it is what it is. The problem of increased pain is somewhat minimized by spreading the meals out and never, I mean never! eating more then 300 calories at any one time.

So this morning my energy level is much higher and I am experiencing just minimal pancreatic pain. My goal for this week is 1800 calories a day, no matter what. I will see if any pain that arises is manageable with the pain medicine I have been given. I will also be stopping in to see my gastroenterologist this week. He seems to think my blocked spleen could be causing a lot of these issues.

My spleen is working through an intricate set of varices it has created around the ECD blockage. It is possible that the spleen is simply working to hard and is causing the pain. I think we will have a better idea of how my spleen and pancreas are functioning after I have been off of the Prednisone for a while longer, as they say...only time will tell.

Disability Reality

My source of energy.

In the beginning of this disease process I had a hard time imagining how ECD could cause me to become disabled. In fact I found the notion that I would ever go on disability ludicrous, even though many people with ECD are on disability. In all honesty I judge them and others on disabilty. They look okay...why aren't they working?

However, after Saturday when I could barely move and Sunday where I had to concentrate and conserve energy just to finish the worship service I understand that there may come a day where I am not able to continue to working. The constant weight loss added to the stress caused by the ECD have left me with no reserves. This morning it took concerted effort just to make myself breakfast, then when I got to work I sat in my car for 15 minutes wondering how I was going to be able to do it.

It is scary to think that there could be a day in the near future when I am forced to give up working. Someone said to me recently, "just put in for disability, you've paid in its yours to use" that may be true but it is never that simple. First, I have been raised to work for what I take (and disability sure feels like a handout). Second, to go on disability means not being able to teach (which would make me sad) and to not be a Pastor anymore (which would be devastating).  If things do not improve though I cannot see how I will be able to keep working.

Hopefully the doctors visits I have coming up with my gastroenterologist, nutritionist and the NIH (National Institutes of Health) will help.

Update: Spoke with my Gastroenterologist tonight on the phone (yes doctors do call you at home but you never want to be sick enough for this to happen) about my weakness and weight loss. He said I have to increase my calories and take the pain that comes with it. Sighh..I'm not sure how long I can handle the pain, honestly I'm barely hanging on here.