Treatment Plan Update

I have my six month checkup coming soon so I thought I would check in with you before the visit and then I will update things after the visit.

My treatment Plan has three parts.

1) I am currently taking Anakinra shots once a day to manage inflammation in my body which seems to have the effect of "pausing" the growth of my ECD. This may or may not be true, but what's certain is that as soon as I went off of this treatment last year the ECD started to spread so I'm hoping that the scans I'll be taking in a few weeks show that were back to the status quo.

2) I am taking .5 ml of Testosterone Cypionate by injection every 6 days to replace the testosterone not being produced by my cancer compromised testes. The result of this treatment has been mood stabilization (though I do tend to get a little off the day before my next injection) and a massive increase in my energy level. Prior to testosterone replacement therapy I was tired and moody all the time.

In an effort to combat the muscle wasting I experienced last time I was on Anakinra I have taken up running. In fact I would say I have become a "crazy" runner. I've attached a few photos from this summers runs and I hope you enjoy them.

3) I am trying to eat a diet very low in fatty and inflammatory foods. This means I've cut out Beef and Pork, Grain, and Dairy from my diet.

My cooking and eating regiment has become a much more permanent way of life at this point. I spend must of Sunday afternoon shopping, cooking, and packaging meals for the coming week. I have been largely successful in moving away from eating 3 large meals a day and instead eat small meals every 1.5-2 hours (more if I'm hungry). I easily eat 7+ servings of fruit and vegetables a day and 3+ servings of lean proteins.

Some people think I'm being drastic in the way I eat, but if my body is the engine that keeps me alive then I can't see how feeding it the best foods possible could be a bad thing particularly when you consider how much my system is already being stressed by ECD.

And that is where things are for now. Please pray for me that this next set of scans shows no new growth, because I could really use a break from bad health news this time.

The Blessing of Cancer

One of the difficulties of having ECD in the beginning was how to explain it to people. Try talking to your boss about how you rare histiocytic disorder requires you to go to the doctor 5-10 times a year and you'll watch their eyes glaze over. Try explainning it to a friend or a family member and you soon find yourself trying to compare ECD to things they might know like autoimmune disorders. The thing is though it always felt like I had cancer but in an effort to be precise I always tried my best to avoid calling ECD that.

The good news though is that the World Health Organization headquartered in Geneva, Switzerland has reclassified Erdheim-Chester Disease as a histiocytic neoplasm. This means the rare disease is now considered a slow-growing blood cancer that may originate in the bone marrow or a precursor cell.

This is great news for two reasons. First, it make it much harder for my insurance company to deny me access to whatever treatment my doctor suggests. Second, it make explaining my current health condition MUCH easier and anything that makes my life easier is a blessing. 

Taking Care of Yourself

With the metastasis of ECD into my mouth has come the return of problems with food (probably indicating some sort of reaction in my pancreas as well). I feel like I'm losing ground in this area, returning to a point with food that I thought I had escaped in early 2014. The result is my diet is now more restricted then ever before (no beef, pork, dairy, refined carbohydrates, high fat foods, fried foods). Which leaves me with fruits, vegetables, ancient grains (no rice), fish, and poultry. I am controlling my weight loss more effectively this time because I know what to do, but I've still dropped over 40 pounds in the last two months.

The transition back to eating "clean" has meant I am now more food focused then ever before. The problem is that there are 5 other people in my house who also have to eat and are not nearly as motivated as I am about what they put into their bodies. Needles to say stuffed peppers, cauliflowers pancakes, vegetarian chili, and vegetables vegetables vegetables have been a hard sell. Initially DawnMarie and I split the cooking, she would do one weeks worth of shopping and cooking and I would do the next. However, I have decided to just take over the task on a permanent basis because I'm a nice guy like that.

[What really happened was I came home to find the dinner menu for the week posted on the wall and there was many meals listed that I couldn't eat like pasta, pizza, grilled cheese sandwiches, and crap like that for a large portion of the coming weeks meals. I flipped out! After a whole bunch of yelling about no one else thinking about what my needs were I came to the realization that this was a me issue.]

First, I was upset because I didn't feel like I would have things I could eat around during DawnMarie's week for cooking. I was worried because for me this was a food security issue. To help address this problem going forward I have started to cook up security meals that I can leave prepared in the fridge/freezer for the week (I'm eating 8-10 small meals a day so having food set ahead of time is a big help). For instance this week I cooked up a batch of Chicken Chili and made some Pulled Chicken Slaw so that I would always have food on hand.

Second, I realized that its not anyone else's job to take care of me. I need to take care of me! The fact is that if I want to control the food being prepared in our house i need to be more hands on with the cooking. Doing so has allowed me to relax a little and be more inclusive of some of the kids nutritional desires like homemade pizza and spaghetti pie.

Has taking over the cooking meant more time in the kitchen? Of course it has, but if DawnMarie could handle it for the last 9 years then why can't I? Funny thing was I asked DawnMarie if she felt guilty about my doing all the cooking and she just looked at me with one of those, hell no look, all husbands are familiar with and why should she feel guilty? I certainly didn't when I was eating her cooking for the last 9 years.

ECD hasn't broken me down to the point where I need to be cared for 24/7, not yet anyway. Until it does, I need to spend more time taking care of my own needs. The fact is that we could probably all benefit from spending a little more time taking care of ourselves.

ECD Global Alliance Gathering 2015 - Patients Speak

I'm the first Patient speaker on the panel. Check out the video at the link below.



https://youtu.be/YVEGXpIhcU4

Lingchi

Someone asked me recently through the Blog how I was doing, so here's the answer.

Over the last year I have gained back much of the weight I lost when I first got sick. Which is good from a health system perspective but not good news for my pants. I am still limiting my fat intake and not eating pork or beef (ever). I've also not had soda since I first got sick. Who knows if these things are making a difference or not, but I haven't had pancreatitis again so I think I'll stick with whats working.

In the last year the ECD has spread from my abdomen to my testicles (in a related form of the disease called Rosai Dorfman), completely destroying all natural testosterone production. To address this issue I am injecting testosterone every six days with the nastiest looking 2 inch needle I have every seen. The thing is if I don't take the shot I'm tired all the time and insane/moody.

In the last few months I have had to have a growth of ECD removed from my tongue and the most recent MRI showed that the disease is now present in my nasal cavity.

What does it mean? That's the scary part. Who knows. Its like every new piece of information is another cut. It's like Lingchi, the concept that a thousand cuts is a much more horrific way to die then by a single catastrophic event.

Every day I wake up I wonder when the next cut is coming. Now I know I'm supposed to stay positive and if you ask I'll tell you I'm doing just fine...but the truth is the cuts...they hurt.