Friday, May 31, 2013

Little victories in valleys of hell

"Your body can stand almost anything. It's your mind that you have to convince" - Unknown

That has definitely been on my mind this whole week.  It is not until we are faced with the unimaginable that we learn that we are strong enough to deal with it.

I was talking to a very good old friend of mine today. Both our families are walking through "little valleys of hell" as a fellow Evans' parent so eloquently put it the other day. We were talking about all our fears with our kids. I mean, how can we protect them? We can't be there with them every single day at every single minute! I am sure this is a burden on every parent's mind, but when you are dealing with tough shit that takes on a whole new meaning. 

He was telling me how his wife and him read my blogs and feed from my energy and my attempts to stay positive and strong for my family. I explained to him that they way I look at it is something like disciplining children.  The tough thing to do is to give them discipline. The easy thing to do is let them do whatever the hell they want.  For me, the tough thing to do is staying positive and strong. The easy thing to do would be to dig a big hole and bury myself, and everyone around me, in it. That is just not acceptable.

Monday, Ric couldn't do his Rituximab treatment cause he was covered in hives. They gave us Atarax to treat it, which is a bit stronger than Benadryl.  That seemed to help. We were hives-free Monday afternoon, Tuesday and Wednesday!!! Wow! Two and a half days of some kind of peace.

Wednesday was the day the New York City Marathon drew their lottery and notified runners who was actually going to run. They do that because they get soooooooo many entries, you just can't register for it. It has to be a drawing, unless you can qualify which for me would be a 3:10hr marathon...yeah, not that good of a runner! This gave me something to fix my mind to the whole day. This day wasn't about Evans, it was about the NYC Marathon.  I checked my email countless times. My friends checked theirs. We were texting, all anxious to find out if anyone made it into the lottery. Some experts say it is harder to get picked to run NYC Marathon than it is to get into Harvard. Ric was having a fantastic day too! Me and the kids sat down for dinner, my hubby was working, and when I'm done I tell the kids "ok, if mama makes it in the NYC marathon you can play video games during the weekdays for what's left of the school year". I mean, seriously, the odds of that happening!! LOLOL I was safe! We fininshed dinner and I tell the boys....I'm going to check one more time, ok? OK!!! they said. And there it was.......YOU ARE IN the NYC Marathon. HOLY SHIT! A VICTORY!!! A VICTORY IN THE MIDST OF THIS VALLEY OF HELL!!!!! Ha! It was an awesome moment to share with the kiddos. When I put William, who's 11, to bed that night he said "I will never forget this day, it was great to dance around in the kitchen because you made it into the NYC Marathon".

After two perfect hours of rejoicing and still not believing I got in, I start thinking to myself....well, that is if I can make it to NYC. I mean, seriously, if Ric is not somewhat stable that is just not happening. However, if I can't make it this year I do have guaranteed entry for next year.

It was amazing how my mind clicked from being a little down and frustrated to this is what I need! I need to train for a race! I need a goal, I CAN CONTROL!!!!! I can control my training, I can control my runs. This can keep me focused, energized, and strong. I don't have to be out there until 2pm! I can start running at 4am and still be back before my husband has to go to work. YES, I can do this! This is just what I needed. Getting to run NYC was the "happy pill" I needed.

Thursday, hives came back around 6:30pm. They weren't as bad as before, but they were there. However, Ric took his med, we put some caladryl and he slept very well. Today, we had to go back to the hospital cause there was bruising, but his numbers were fine. 97,000 platelets! Whohooo!!! Another little victory!!!!!

So, this is how I choose to measure this week.  Out of 6 days, Sunday, Monday and Friday were stressful. Tuesday, Wednesday and Thursday were just fine. That's better than last week, where we had 6 stressful days. I have to convince my mind that we can handle almost anything. That's the tough thing to do, but it is doable. My dear good old friends, we can't lose focus as we walk through our little valleys of hell because at the other end of this valley there's an amazing beach where we will sit with a mojito in hand getting energized to walk the next valley.







Wednesday, May 29, 2013

Going, going, going...

Last January I ran the Goofy Challenge at Disney. What that entails is to run a half marathon (13.1 miles) Saturday and run a full marathon (26.2 miles) the next day for a total of 39.3 miles for the weekend. Yes, I know to normal people that sounds just stupid. To me, it sounded like fun! 

When you run these crazy distances, you are bound to feel tired during the race. Things will pop up. One of my running buddies had blisters pop up during the marathon at mile 6 or 7...which sucked for him cause we still had a loooot of miles ahead of us. I felt fine until around mile 20. That's when I hit my wall and started feeling every bit of aching in my body. However, something magical happens when you run a marathon. It's almost like your mind knows it can't give up, so it keeps going and going and going.  It is not until after you cross the finish line that you really start feeling the effects of the crazy shit you just did. 

This past week has been just like the marathon. I'm going, going, going regardless of what little signs my body sends me to stop and rest. The last two days have been less stressful and now I feel exactly how I feel after I finish running 26.2 miles. I am exhausted!

Ric has been having serious hives for a week now. We ended up in the ER Sat night cause he felt his throat a bit tight. The dr's at the ER had no idea what Evans was....autoimmune! I tell them and they reacted.  They were literally googling stuff and I'm giving out orders! We need a cbc with differentials stat! He is neutropenic! You can't give him benadryl cause I gave him his last dose at 7! I was schooling them, I was the expert. Unbelievable! But, this is to be expected and our job is to educate people around us, including doctors and nurses. This was the equivalent of mile 21! Stressed out, tired as hell since I had woken up at 4:45am to go race a 5k and my body was just begging to rest, but my mind just kept going, going, going.

We couldn't do chemo yesterday because of the hives, now we wait until Monday. We have been hives free for almost 21 hrs now! Whoohooo! A little breathing room for all of us! 

It's been a marathon, but thank God I know how to deal with marathons! I just have to remind myself not to go crazy and not to overextend myself either. There are going to be massive walls along the way, but as long as we have tools to deal with these walls we will be fine. 

Now, I am feeling the effects post marathon. I just hope my mind and body react to this new craziness as it does during a marathon. I want the magical thing happening where my mind keeps fueling my body, regardless of the circumstances. I know that once we get to remission it would've been all worth it. I have to remind myself this is training and this past week was a sucky week at training. That's all!

Saturday, May 25, 2013

States of alert

You know how the country is constantly on a state of alert?? Yellow, orange, red?
That's how I feel constantly. I am in a constant state of alert.  

Ric had his first chemo this past Monday.  All looked good. I was happy there was no reaction! Whoohoo! Then came Wednesday and the hives. Hmmm, hives? Wednesday, 2 days after? Let the calls begin! Dr says it is a normal reaction, but usually immediately, not two days later. Thursday doc says it may be because he is out of the prednisone. Let's go back to it and wean him out again, slower. So, back on steroids.

Friday the heartburn! To the point where he is completely uncomfortable. Zantac's turn! Friday night he complains about a pain on the left side of his chest. Hmmm...that I can track! Thank you Garmin!! I strapped my heart rate monitor on him and started measuring his heart beat. A little high, but nothing to be concerned about, as per the pediatrician who I'm texting like a crazy teenager!

Today, more hives! What the hell? Benadryl again with Prevacid this time cause apparently those two work well together, who knew! Hives are coming in quick, under his arms, behind his neck, behind his ears, on the side of the neck. What the hell is this? So, we start getting the hives under control...thank God! Ten minutes later.....a bruise. Text a pic to the pediatrician....ok mom, platelets are low. Let me see if we can get labs done tonight.

Here we go, Evans is rearing his ugly head. No labs can be done tonight, we'll have to wait. If he gets more bruises overnight, we have to go in the morning for labs. If he doesn't we can wait til Tuesday when we go in again for treatment.

Always on a state of alert!!! Today we are in orange. I just want to have one normal day in which our alert level can be on yellow and I can kind of breathe! Oh, and also not drive our pediatrician crazy with texts and pictures! We have the best pediatrician in the WORLD!!!!




Monday, May 20, 2013

Don't lose it!

All in all today was a good day. Ric tolerated the medicine. No reaction, no allergies and so far no side effects are to be expected. 

He was a little anxious in the morning, but so was every living being under this roof.  His friend Cristian came with us to keep him entertained. Best idea ever! They played video games for a while, chit chatted and, all in all, spent a good day together.

I was ecstatic Ric was responding
so well to the new treatment. We'll see in a few weeks if his cells agree. 

The worst part of the day was seeing all the other little children going through their treatments. Kids battling cancer with no hair, dark circles under their eyes, exhausted. Their moms strong, although dark circles under their eyes were noticeable too. But, you couldn't tell these moms were suffering for their kids. These moms are warriors! They are the captains of their kid's team! It gave me such strength to see strong women all around me while at the same time seeing sick kids all around me.

As Ric sat there taking his chemo, I just kept thinking "Do not lose it!" " You can NOT lose it" "This is what needs to be done so he gets better". It was hard.  Today was ridiculously hard, but we survived. Ric responded and I didn't lose it. I'll take it! One down, three to go.

I don't know if these appointments are gonna get any easier. I really, really have no idea. I just hope that Ric keeps responding to treatment and getting closer to remission. 

I allow myself 5 to 10 minutes of a little breakdown a week. Just had it. That's it! The rest of the week will go by flawlessly. I have a very strong boy and I am very proud of him!








Saturday, May 18, 2013

Endurance

There is a point during a marathon, for me around mile 22, when I doubt myself, I doubt my training, and most of all I doubt my sanity!!!

When we train, we are trained to push through tough days, push through negative thoughts, push through the heat or the cold. Just push through the proverbial "wall".

When I trained for my first marathon I discovered myself.  I didn't realize I could be that disciplined and determined.  I often compare running to life.  They are both filled with victories and failures and moments that make us or break us. Now, as we face what is an ultra marathon called Evans, more than ever I can apply all that running represents into this.

Last October, Ric ran his first half marathon. He understands what it is to train when you don't want to, do hill repeats in 90 deg weather, go to bed early because you have a run early in the morning.  Endurance running requires sacrifice, discipline, focus and desire.  Dealing with Evans is no different.  I constantly find myself in conversations with him where he tells me "This is like half marathon training, right mom? It sucked, but I did it!" Yeah, Ric didn't enjoy training too much, but, like he said, he did it.

That's where we stand today. He starts his new med Monday, Rituximab (chemo) and it sucks, but this is what this week of training looks like in the ultra marathon training program of Evans Syndrome. We will have moments of fear, moments of doubts and moments where my sanity will be tested. We just have to stay strong and remember there will be good days too. We will endure this and whatever else is to come. After all, this is just another challenge in the marathon of life.

Wednesday, May 15, 2013

Ordinary Miracles


This has been the week of  people telling me " I don't know how you're dealing with this".  So, for all of you wondering here it goes.

 We try to keep some normalcy at home.  Kids go to school, kids argue, kids get on each other's nerves, kids play video games. Husband goes to work, comes home from work, has a beer, reads, plays on the internet and deals with mom when she's having a breakdown. Mom runs, works, coaches, goes to boot camp, cooks while the music is on, sings along to the music, talks to her friends and drinks some wine, as needed. So, stop asking how we are dealing with this. Cause this is the answer! I understand, to most people this is an unimaginable situation, however it is our situation and our "new normal" and we have to roll with the punches.

So, our routine now includes weekly visits to a hemotologist/oncologist. So what? We are certainly not the only family dealing with a sick child nor the one with the sickest child out there. We need to stay strong and focused and so does our village!

There's this song called Ordinary Miracles, the master Barbra Streisand sings it. I LOVE Barbra! Most days I think I can totally sing with her! Hahaha! My kitchen has great acoustics! Music is another one of my many therapies.  It seems, that lately, songs are taking on a whole new meaning.

Ordinary miracles. Do you know that the new drug Ric has to take, starting next week, is a drug used to fight Lymphoma? So, all my efforts with Team in Training and The Leukemia and Lymphoma Society are working now for my family and all Evans families out there.  Do you have any idea how AMAZING it feels that we played a part on that? Just because we decided one day to try and change the world and do an ordinary miracle. "Just as pebbles make a mountain, raindrops make a sea, one day a time, change begins with you and me". Seriously!! Is Barbra talking to me???  And not only to me, but to all the amazing people I know that have either participated or donated to TNT. To all of you, THANK YOU! Thank you for being "quiet heroes, living quiet days, walking through the world, changing it in quiet ways. Ordinary miracles, like candles in the dark, EACH and EVERYONE of us lights a spark!" Thank you for taking part in repairing the broken pieces of the world.

Our walls are tumbling, the mountains are moving, the winds and the tides are turning. However in joy and quiet wonder we will see miracles multiply.  "Hope can spring eternally", we will plant it and it WILL grow cause all you need is love and we have plenty of that.

Ric starts Rituximab on Monday. This is intravenous, but we shouldn't see too many side effects. Still, we have to sit there for a few hours while the medicine goes in.  The way I see it we have two choices. We can either be a ray of light to all those kids (and parents) that will be there taking their chemos as well OR we can go down the deep dark hole of depression. Hmmmmm.....which one to pick?? It's not the hole, I can tell you that! Ric is in good spirits and understands that this is part of the road to remission. From what I've read 60% of kids respond to this treatment. Fingers crossed!










Monday, May 13, 2013

It takes a village!

When Ric was hospitalized 4 weeks ago, one of my very good friends told me "Listen, you need to be like a palm tree.  You have to sway with the weather. I know you are black and white, but you have to become a palm tree now."  I am pretty sure, my friend has no idea how many times a day I think of being a damn palm tree.  Just sway, don't get desperate or impatient. Sway, because palm trees survive hurricanes.

I have been very lucky with having people around me that care about my son and my family.  My friends have been amazing. Even though, there have been times where I've said things like "I have 4 doctors giving me orders, you can not tell me what to do", they still stick by my side.

Sometimes the outpouring of love is very overwhelming.  When Ric's numbers went down last week, they all went into problem solving mode (one of the many reasons I love these peeps). "Do you want me to cook for you? Do you need some wine? We really want to help! Let me know what I can do for you."  It sucks that when his numbers go down, there is really nothing anyone can do. There's nothing Ric can do, there's nothing I can do and the doctors....well, they are almost as baffled as we are. I know it must suck for them that I say the same thing all the time "I'm fine, there's nothing to be done, thanks anyways" because I know how bad they just want to help us out.

When I run, I disconnect from Evans (just a bit). This past weekend our team had a race. Everyone had set goals for themselves and two of my teammates wanted to run a sub 1 hour 10k (6.2 miles). As their coach (and their friend), I had told them I would pace them for that. It was the most peaceful run I've had in a while. Speed gave me clarity, perspective. The only thought going through my mind was "I just need to get these two to the finish line, in less than an hour". Just that thought. No Evans, no neutrophils count, no white blood cell counts, no wondering what the next treatment is going to be....just 6.2 miles and my girl's goals in my mind. It was a hot morning, but we did it!! We ran 6.2 miles in less than an hour! The ladies were very proud of themselves. It made me feel great that I helped them achieve their goal. Even though my hands are tied when it comes to Evans, my hands are not tight when it comes to running.  It feels good to be able to control something. I can always control my run.

I want to thank my village! They know who they are. I know sometimes it seems that I'm just being stubborn with not accepting help, but know that there is really nothing you can do at that moment.  You know that I will ask for it, when I need it. I am so thankful to have you all in my life, my running friends, my wine drinking friends, my mommy friends, my old friends. I adore you all and you are helping this palm tree sway and survive the hurricane.


Thursday, May 9, 2013

Defying Gravity

There's this awesome play called Wicked. I love this play, love the story and most of all love the music.  There's this song called Defying Gravity, which I have always felt very identified with. Now more than ever, I find myself singing it just to remind myself that "Unlimited....together we're unlimited!!! Together we'll be the greatest team there's ever been....there's no fight we can not win...you and I defying gravity!"

Now we are defying gravity! Dealing with an autoimmune disorder that is rare, sucks. It sucks ass! But, I have to keep reminding myself that no good will come from being sad, no good will come from falling down. So, I am trying to defy gravity!

I wish Ric's platelets will defy gravity too!!!! This week we are waaaaaaayyyyyyy too close to the danger zone (50,000 platelets). We are at 54,000.  His white blood cells dropped drastically and his neutrophils (specific wbc in charge of fighting infections) dropped from a whopping 5960 to 740 in 7 days. Yeah, this kind of sucks. If neutrophils drop to 500 or less = hospital = iv antibiotics to help his body fight. His steroid dose has been increased to see if that will help his numbers go up a bit.

Ric's biggest concern.......a field trip he has to Islands of Adventures. He is 14 after all and I can't expect for him to understand why the doctors are concerned with him going to the field trip.  I mean, he understands, but he doesn't want to hear it.  They still haven't decided if he can go or not.  It would totally break my heart if he can't go, but we all need to start working with understanding that these things will happen. Defying gravity again!

So, white blood cells, platelets and neutrophils: you will not bring us down!  Our family will defy gravity and we will be the greatest team there's ever been! So, suck it!



Tuesday, May 7, 2013

One day at a time

Yesterday was such a cool day! Ric has been banned from contact sports, for the time being. I have been trying to convince him to go to swim practice with me and my tri team, but he has been resistant. That is, until yesterday!
"Mom, I wanna go swim with you. But, I don't want to wear my regular bathing suit when you all look like pros." "Pros? Dude! We r not pros, we are enthusiasts!" "Well, you look like pros to me". I grabbed one of my tri shorts and gave it to him so he would look the part as well....you know like a pro!

Off to swim we went! We get to our local YMCA, he picks a lane, coach gives him instructions and off he goes. Off I went to!
Swimming is one of the most relaxing, mind clearing exercises in my life. All I focus on is how many yards I've done or have left! Just numbers going through my mind. Not numbers of white blood cells or red blood cells or platelets...just my distance. Nothing else in my mind, and that's not easy given I can't just be quiet or idle at any given moment. Very relaxing! Yes, I do understand that my idea of relaxing differs from that of normal people. 2600yds in the pool is all the relaxing I need....well, besides running!

I was done with my workout and Ric is still going up and down the lane. Coach tells me "he wants to swim 200 without stopping". Cool! Awesome! A goal! Whoohoo! He crushes that goal!!!

He gets off the pool and the endorphins begin to talk! Holy mother of God! Is this what I sound like after I do my long runs?? The boy would not shut up about how awesome and strong he felt in the pool! Awesome and strong!!! Two words he hasn't used to describe himself in the last 4 weeks! It's amazing what a little exercise can do for you! It definitely makes you happy! Thank you endorphins!!!!
Now, he wants to swim! Yes!! Swim!! No impact, he can totally do it, regardless of his number of platelets! Take that platelets!

I hope he finds a healthy outlet in swimming! At least he did yesterday! I'll take it! One day at a time!!


Monday, May 6, 2013

#mommyrunstokeephersanity!!!!

Lots of things going through my mind.

First, I had to establish a new rule...If your platelets are below 100,000 you have to stay here, where I can see you at all times!  I mean, seriously! How the hell did I become that mom that cares about platelets levels? I guess that's what dealing with an autoimmune disorder will do to you.

His platelets last week went down from 103,000 to 70,000.  The "danger zone", designated by our doctors, is 50,000. So, yeah, in my mind 70,000 is close enough to keep him under watch.  He's still allowed to play basketball (his passion) and all that, but here where I can see him and keep him "safe" in case he starts bleeding or bruising.

I had big plans this year for me and my sports, which of course have taken a backseat to all this.  I was planning on racing Ironman 70.3 in Augusta in September.  However, since all the doctors are telling us it will take between 6 to 8 months (training time) to figure out which  medicine he will respond to, Ironman 70.3 has been postponed to, hopefully, 2014. I know this sounds extra selfish, but I'm super bummed I can't do that this year as I know it would've kept me focused, clear minded and entertained throughout this Evans ordeal. The thought of paying for that registration to end up not being able to do it because of a possible emergency with Ric keeps me from doing it.  Oh well!

Coaching keeps me focused and clear minded as well. Of course, running does too! All the doctors have said NOT TO STOP RUNNING....so to all my friends who keep bugging the hell out of me...SHUSH IT! NOT HAPPENING!

Yesterday was a great day! My athletes were competing in a triathlon, all distances, sprint, oly and 70.3 and they all did great! It was awesome to see their hard work pay off.  It just keeps reminding me that dealing with Evans will definitely be like dealing with training.  Some days, it will suck. Some days it will be completely fine. Some day we will get into remission = temporary finish line.

We have more blood tests this week. We'll see where we are! For now, TODAY it is just Evans and NOT cancer. For now, TODAY he will live a normal day, go to school, bug his brothers, annoy me with his 14 yr old antics. For now, TODAY, I will swim and clear my mind where there is nothing in it, except my distance. For now, TODAY, everything is fine and I am happy with that!

Thursday, May 2, 2013

Week 3

Who would've guessed that someone who has a degree in Comparative Literature would know so much about cells now?
I guess that's one of many superpowers moms have. We can adapt to crazy circumstances around us and become experts at it! It's like when your kid coughs a certain way you know exactly what he has and you basically end up telling the pediatrician the diagnosis and what to prescribe!
Waiting for CBC results is now exciting! Well CBC results with differentials! Yes, I want to know the exact number of cells in my boy's body, cause I'm OCD like that. Suddenly words like neutrophils, MCV, platelet count, RBC, WBC etc have become part of my daily lingo.
It does gives me some comfort to research and know all there is to know about this Evans character.
This week his red blood cells (rbc) and white blood cells (wbc) and neutrophils were great! Platelets, not so much. 70,000 from 103,000 last week. Not bad, but we don't want to get too close to 50,000 aka the danger zone. Apparently, that antibody is still having way too much fun with my son's platelets. However, he better watch it, cause this mom is on top of it!

Wednesday, May 1, 2013

Dealing with Evans

A few weeks ago, I noticed my 14 yr old son's lymph nodes enlarged.  I know enough to know lymph nodes shouldn't be enlarged, especially if there's no cold or infection.  Therefore, I took him to see his pediatrician.  He also had little red spots in his hands and on his chest...later to find out this is called petechia.  Well, it was a Friday morning when his pediatrician told me she was going to test for everything. Everything meaning leukemia.

I don't have the words to explain how that felt like, so I won't even try.  After a few days in the hospital, a bone marrow biopsy and aspiration and endless blood tests, the doctors told us it wasn't leukemia. The sigh of relief in that room was very noticeable.  Little did we know at that time, that the fact that we weren't dealing with cancer didn't mean we weren't dealing with something serious.

Thus came Evans Syndrome into our lives. The doctors told us there is very little information about this, therefore treatment is kind of a hit and miss situation. Lovely! I'm a marathon runner. I like planning, I like schedules and they were throwing me into a pool of gray! Evans Syndrome is a very rare autoimmune disease where his body creates antibodies that are killing his white blood cells, red blood cells and platelets.

How do you deal with stuff like this? Well, I have no idea.  We, literally, have to take it one day at a time. For now, I keep on running. I am also trying to bring awareness to the cause, as the medical community doesn't think they need to research for a cure because there are not enough patients who suffer from this. This is a 1 in a million odds that you will get this. My son is case #75!!! 

Today, we drew more blood. Now we have to test him on a weekly basis to make sure he's responding to treatment.  Waiting for results is like waiting for marathon morning. You are anxious and looking forward to great results because you have done all the work!

I have decided I will approach this as I do marathon training. One day at a time, trusting that if we follow our "training" plan, my son will be fine!