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.