Glorious Day!

Today is the last of 14 chemotherapy treatments that started back in January. What a journey it’s been! When I was diagnosed I was not mad at God but I did question why he would let this happen again. I couldn’t understand it. We just got settled into living in  Nicaragua and could not wrap our minds around why this was happening. Why at all, but really, why now? So, there was a lot of confusion but we know God’s ways are not our own so we made the decision to trust him again with this and see what he does with it.

If I had to compare this time with the last time I was diagnosed 7 years ago I would say this time has been much easier but not without struggle. My treatments were every three weeks. So on every third Monday I would go in for 7 hours and receive my treatment. Then I would spend the next 5-7 days popping meds to avoid nausea and then have to take a bunch of other meds to counteract the side effects of the anti-nausea meds. This was not easy on my body. The two weeks after that I would feel pretty good and found that I could accomplish quite a bit. It was obvious to me that God still had things for me to do. But what he taught me was that I needed to be patient and trust him because although it was “easier” I still have a rough road ahead. This was my treatment cycle.

During the two weeks post treatment, when I was really starting to feel good (I’d even get a nice peach fuzz growing on my head) the looming cloud of chemo week was always there. When it came it would stop me in my tracks and keep me out of things that I wanted to be a part of or keep me from seeing people I wanted to see. That was the hardest part - how disruptive to life it was. It played on my emotions at times too. While I now have 100 new hats in my closet, looking at myself in the mirror without hair got old really fast. Wearing a wig made me feel worse, so I barely wore it even though it kept people from staring at me in public. Normally the looks didn’t bother me but if I wasn’t in the best mood, it would effect me. In general, the experience made me put my life on hold and changed me again physically. My hair will grow back and I’ll lose the weight I gained but it’s the permanent damage that I can’t do anything about.  

But like I said, God told me to be patient and to trust him. Looking back, now at the very end of this cancer journey, I can see all the intricately placed moments and events that have occurred as a result of my sickness, and how they were all perfectly orchestrated with incredible intention that only a completely loving and incredibly merciful and gracious God could do. His ways are not our ways.

Relationships strengthened, new ones formed, abundant healing, people entering the Kingdom, and an even closer relationship with my creator are just a few of the things that have come as a result of my cancer. I love the life he has given me and I wouldn’t take back a single moment of it. While I did not enjoy having cancer and would prefer not to do it again, I’m not altogether sorry it happened. The good trumps the bad because that’s the kind of God we serve.

So, I’m beyond happy - on so many levels. I want to thank my amazing husband, incredible family, friends (near and far), and church body. Once again, you have given me love, laughter, and joy during a time when darker feelings could easily be present and take over. Thank you to my wonderful doctors and nurses who have taken such good care of me (even when I forgot about appointments or to refill my medicines on time-it was the chemo!). :-)

As I look at our calendar, at the months ahead, I am thrilled with the things we’ll be a part of. I am excited because God has used the last nine months to prepare us for the work we have ahead of us. Seven days from now we’ll be on a plane to Jerusalem. No, we don’t waste any time. I am married to Dustin remember!  And the adventure continues....

First time apple picking this past weekend. 

"Once you learn to read, you will be forever free."

— Frederick Douglass

Last year, before embarking on our year long commitment living in Nicaragua to further the PEACE plan for our church, both Dustin and I were contracted by Orphan Network (ONET) to complete several initiatives. One of my tasks was to launch the same Adult Literacy and Life Skills program we started on the east coast in Puerto Cabezas, but on the west coast. The first community ONET wanted me to start with was the refugee community of Nueva Vida. Nueva Vida was where many families were relocated after the devastation of Hurricane Mitch in 1998.

My cancer diagnosis came after only a few of the initial meetings had taken place and severely slowed things down after I left the country. Working with Nicaraguan ONET employees, via email, enabled the training to take place this past March. With the help of the adult literacy contact and a teacher from the east coast and Dustin, the training was successfully completed in five afternoons. Out of 19 trained, 9 committed to the year long class and quickly started gathering students. Currently there are 5 classes (teachers are partnered up) and 75 students.

I got back from Nicaragua Tuesday and was able to meet with Pastora Cecilia (the woman managing the rest of the teachers and teaches her own class) and several of the teachers. They are almost finished with the first book. I was prepared to get a lot of questions and challenges brought to my attention since I haven’t been there post-training. However, that wasn’t the case. Several challenges were brought up but they quickly told me how they worked through the problems and were able to move ahead. This was incredibly encouraging because a.) they remembered the problem solving suggestions given in training, and b.) many times, in our experience, when a problem arises everything stops until we intervene.

I asked them to share how they are already seeing change in their students lives. Here are a few examples:

• Many students didn’t even know how to hold a pencil, no less write with it. Now they are easily and accurately writing letters and numbers and constructing short sentences. (I saw some written work and was impressed with the penmanship.)
• Jessenia, a 30 year old with three children (2, 6, & 11 yrs. old) is so excited to be learning to read and write that she is now teaching her children to do the same. This has given her a greater sense of dignity and self worth.
• Students have been able to read signs in town and not depend on others for help.
• After the lesson on “Vaccinations” , students were now aware that these were even available to them for their children.
• One woman whose husband would talk down to her and call her ignorant has learned during the “income” lesson that she isn’t stupid because she earns money selling sweets and actually earns more than her husband does. This has given her a sense of self worth and confidence that she’s never had. (Now we just need them to revisit the lesson on how husbands and wives should treat each other ;) )
• One class, during the first lesson on “Basic Needs”, was made aware of the fact that everyone in the community has different levels of needs and that they should not gossip (a huge problem there) about people who have been given things by outsiders or others in the community because they may really need those things that others already have or take for granted.

These are just a small sample of the positive changes taking place because of this unique literacy and life skills curriculum aimed to not only make them literate but to make them more self aware and raise their consciousness level to empower them to make positive changes in order to improve their standard of living.

The people read it and were glad for its encouraging message. - Acts 15:31

Surely you have heard about the administration of God’s grace that was given to me for you, 3 that is, the mystery made known to me by revelation, as I have already written briefly. 4 In reading this, then, you will be able to understand my insight into the mystery of Christ, 5 which was not made known to men in other generations as it has now been revealed by the Spirit to God’s holy apostles and prophets. Ephesians 3:2-5

The early church grew because of truthful encouraging letters from the early Apostles and Prophets. By teaching people to read we are equipping the students in this community to be encouraged by the "word" just as the early church. During those times the “word” launched a movement of change and transformation and that's what we believe can happen in places like Nueva Vida.

So I left that meeting with a big smile on my face and very encouraged by the continued enthusiasm of the teachers and their promises of sticking through the year regardless of what challenges may arise. One of the teachers showed me an “exam” they made up to check her students’ progress. It brought me so much joy to see these students writing their names and complete sentences. I encouraged them to engage more with their students on a personal level because I want to hear even more stories when I return!

Lucky 7

Today marks the half way point in my chemotherapy treatment. (Seven down, seven to go!) I think I misled some people when I said the tumor and any live cancer cells could not be found during my last surgery. While this was awesome news, I still need to finish out my chemo./radiation protocol. Just in case. You never know if there was a rogue cell that decided to flee the scene and go elsewhere in the body. Radiation starts this Thursday and is every week day through July 2nd.

Dustin recently had to travel to Miami to take care of some business for his role with Orphan Network. I tagged along and we stuck around the area for a few extra days to do some exploring. My friend Jen flew down to meet us for the weekend. Bummed by the rainy weather we drove north to  sunny Orlando and found ourselves at Universal Islands of Adventure. 

I got over my fear of roller coasters back in high school but if I haven’t been on one in a while there is that little bit of anxiety that tends to form. Our first stop was to the new Harry Potter section of the park and on the roller coaster called Dueling Dragons. As we dropped into our first cork screw, I was deafened by my own screams as well as Jen’s. Somewhere between a cork screw and a loop, I thought to myself, “This is insane!” But I wasn’t thinking about the roller coaster. I was thinking about the fact that I was ON the roller coaster while in the midst of chemotherapy treatments. Suddenly the sounds of the coaster and screams were drowned out by the thoughts of happiness, thankfulness, and flashbacks to a time when I had undergone chemotherapy treatments and could barely keep myself out of a hospital no less ride a roller coaster in sunny Florida.

Jen and Dustin

Since then I have been thinking back to that time in 2005/2006 when I was fighting the same cancer I had this time and comparing everything from treatments to side effects to  what I was capable of doing. I wanted to share a few of them because while this whole experience is not something I wanted to repeat, I can see the good that is coming from it at a much smaller cost as last time (if that even makes sense - it does in my brain).

Hospital visits, infections, and pain OH MY!

2005-2006: 

5-6 emergency room visits (twice via ambulance)

two intrusive surgeries with long recoveries, 

3 additional hospital stays

Multiple infections, including one that was almost fatal,

Constant bone pain in pretty much every joint at one point or another,

a lot of crying,

And, more encounters with a catheter than I’d like to admit or remember.

2012:

So far: 

2 minor out-patient surgeries

Minor nausea during first three treatments

Only cried once, ok, maybe twice :)

Oh the places you will go!

2005/2006:

The only places I went were:

My couch,

the hospital and emergency room,

doctor’s office for appointments and chemo infusion,

Fairfax hospital for radiation,

the occasional visit to Forest Grove to visit my friends,

Lake Anna,

family’s homes, and 

Church

2012:

Visits with family, friends, church, and the usual doctor/chemo visits,

South Bend, Indiana & Chicago for my friend’s bachelorette party,

Seattle, Washington,

Managua, Nicaragua to run a literacy training conference,

Miami, Florida,

South Bend, Indiana for my friend’s wedding that I was in,

Kill Devil Hills, North Carolina,

wake surfing at Lake Anna,

With near future travel plans to Nicaragua and Israel (and other far off places yet to be revealed).

One of the reasons things are going so well is the fact that I am getting less chemo drugs then last time. So I’m thankful for the advances in the research for rhabdomyosarcoma in the last five years.

So what else am I thankful for? 

I’m thankful for a calendar that’s almost always full. 

I’m thankful for a wonderful family.

I’m thankful for old and new friends.

I’m thankful for a husband who stands by my side every step of the way. 

I’m thankful for extra time to pick up old hobbies.

I’m thankful for energy to exercise and take the dog for long walks.

I’m thankful for the energy and ability to travel.

I’m thankful for social media for allowing me to communicate to friends and family that are far and near.

I’m thankful for coffee (even though it tastes funny on chemo weeks).

I’m thankful for great doctors and nurses.

I’m thankful to have been a bridesmaid in two weddings - one of which I danced half the night.

Most of all, I am thankful to know a God that can take what was meant to be a bad situation and continuously bring good out of it. I am thankful for his mercy, grace, and above all, love. He continues to show just how much he loves me and how his ways are not my ways.

Romans 8:37-39 No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

My Nica Visit

I was hoping to have an updated blog post quickly after returning from Nicaragua but as you know, after coming home from any kind of trip, there’s always a million things to do when you get back. I had two days to get all this done and try to find some rest before having my next treatment...unfortunately, rest did not win out this time. Therefore my treatment wore me out quite a bit this time. Anyway....back to my trip to Nicaragua.

Well, needless to say, I was very excited at being able to go in the first place and was praying fervently that nothing would get in the way of me going, and keep me from staying the whole week.

The very first thing I did when I arrived was jump in the car with Dustin, Alvaro, Yordanka, and baby Joanquin and head over to the hospital to visit with children who have cancer. Now what I pictured and where I went was different. Next to the hospital is a home run by several Catholic nuns who house the families of the patients who have treatment. It is conveniently located next door and is a very nice facility. The grounds are nicely kept and the walls are brightly colored. There is a play room and a newly expanded kitchen so all the kids can eat at the same time. There are two courtyards that have surrounding rooms where the families stay for as long as they need.

As the children and their families slowly gathered in the foyer, any anxieties of not being able to keep it together emotionally quickly faded away. I was left with a sense of joy to be able to be around these beautiful faces that unfortunately had to be going through cancer, and share with them they that are not alone.

It was a quick talk followed by the handing out of mass quantities of sugar! Then the group photo. As soon as I sat down, an adorable little girl came running to my side. She didn’t say a word but just looked at me and smiled then she sat on my lap. There was a connection there that I can’t explain but I think we both understood.

The adult literacy training in Nueva Vida was successful! We had 25 sign up (was told 35 prior to coming but, hey, lost in translation??). We had 19 show up and stay for the week! Due to the schedules of the adults and the students, we spread the training over 3-5 hours a day throughout the five days. There was a lot of verbal and non-verbal feedback from the group and you could tell the ones who were really getting the vision behind the curriculum. It was great to see the two women from Puerto Cabezas (Mary and Sheyla) involved, as well as, Dustin and our translator David (who is currently with Orphanetwork). By the end of the week, their brains and hands were full of the materials they need to succeed in leading a class in their community. I will be in constant contact via David and email to make sure the next steps are taken quickly and that we can launch the classes in about three weeks! 

It was a great trip. During our down time, we got to enjoy the scenery and remember what it was like to live there in our short time. It was almost a tease, you could say.  But, cancer is my reality whether I am in Nicaragua for a week or not. So I’d rather have a week in Nicaragua, enjoying my time there and living out my calling, then staying at home just thinking about it.

Dusting off the Spanish Books

I just finished my third treatment (out of a possible 14) and I think we finally got things the way they ought to be. What I mean is, the first two treatments didn’t go very well. I had, what I thought, was an allergic reaction (which was really a sudden wave of heavy nausea that triggered a panic attack), which kept me from taking the power-house anti-nausea medication Emend. As a result, I was nauseas all week. Treatment two was the same since I didn’t take the Emend, but it was worse then the first week. This past Tuesday was treatment three and we decided to give the pill form of Emend a try. And lo and behold, I was fine. It was a little bit of a mental battle but the thought of having the next twelve treatments go like the first two, gave me enough guts to try it again. So this week has been much better. Not awesome, but better. 

Today is sort of my “Hump Day.” Day five or six is when things start to get noticeably better and I can start doing normal human things like walk the dog or go to the store and not have it zap all my energy. Today, I find myself at the computer getting all the Adult Literacy materials ready to hold our third Teacher Training Program in Nicaragua!

On March 4th, I am flying to Managua to hold the first Teacher Training Program in the refugee community of Nueva Vida which is located on the west coast of Nicaragua, just outside Managua. Even though things have slowed down a bit, due to my illness, I’ve still been working with Orphan Network to figure out a way to get this training off the ground. 

Before I go any further, for my worriers, I already cleared this with my doctor! We planned it a week before my next treatment which is when I feel the best. :)

Mary (the Literacy Coordinator in Puerto Cabezas) and Sheyla (one of our shining star teachers) are flying over from Port to assist in the training. Dustin will also be taking on some of the sessions to lighten my load. I am beyond excited!

I recently shared this with a friend and she innocently asked me “why?”. Why during this time would I not just focus on my health? Here is why. Two years ago, I asked God to tell me where I could best use my talents to better serve him in Nicaragua. I loved going there but after a while I felt a desire to do more, especially if I was going to be there so much. At the same time, Dustin was exploring the Education component of the P.E.A.C.E. plan and was just told about a successful adult literacy program being used in India. After going to India and being trained on the program and then deciding to go serve full-time, it was clear that this is where God wanted me to be. I have a Masters in Education and seven years of experience under my belt. It was perfect.

When I found out I had cancer again and had to come home, I was confused to say the least. But I trust God with my life and I know he was going to use me whether I was in Nicaragua or Virginia. I just had to continue to trust him and listen to him. So I continued to do what I could from home, via email and phone calls, so that we could keep the literacy ball moving down the field. That brings me to today, getting ready to head to Nicaragua once again to do what I know God called me to do. I can see what God is doing with this program and there is too much at stake to not continue. I believe, even though I am home and sick, that God is still calling me to serve in this capacity. We’ve equipped people in Nicaragua who are capable to work alongside us so that things aren’t slowing down but moving ahead. So why? 

Why not?

James 1:3 because you know that the testing of your faith develops perseverance.

Digging Out The Pink!!

The last time I was sick there was this commercial on TV about cancer (and if my memory was better I’d go into more detail) and it would make me emotional every time I saw it. Don’t even get me started on the St. Jude Children’s Research Hospital commercials! But whenever a Susan G. Komen 3-day commercial came on I not only got choked up,  but I felt a sense of urgency to be a part of this nationwide fundraising event to support cancer research to find a cure. I didn’t have breast cancer but there’s not a Rhabdomyosarcoma 3-day otherwise I’d walk in that one. :-) But cancer is cancer and I would love to see a cure in my lifetime. 

Growing up, I would participate in these type of events (Easter Seals, March of Dimes, etc) because they were fun but I also knew I was helping in a way. So when I started seeing the 3-day commercials I naturally wanted to be a part of it.

I signed up to walk in 2009 and had an amazing time. I think I cried all three days. Day one because I finished and thought that I could actually do 60 miles despite my foot pain. Day two because I was in a lot of pain by the end of the day and when I made it all the way back to the campsite the screaming and cheering of the people manning the entrance triggered a floodgate of tears. And day three because I did 60 miles on busted feet and I felt a sense of accomplishment. 

Along the route during the 2009 Walk

After a good cry behind the finish line

Closing Ceremony

In 2010, Dustin and I signed up to drive a “Sweeper Van.” We decorated our van (with the help of the amazing Julie Galvin) and would comb the route cheering people on and picking up those who wanted a lift to the next stop or needed medical attention. It was great to be a part of it but it wasn’t the same. We got some donations but there wasn’t a requirement for crew to raise. Since then, I wanted to walk again but didn’t think I should, with my feet and all. So instead, I would donate to friends and/or family who were walking. 

Our version of Dr. Seuss's One Fish, Two Fish, Red Fish, Blue Fish

Don't mess with a man in pink!

This year, after being diagnosed again, I was pretty determined to walk it a second time. When I saw the commercials being played, earlier in the month, I made up my mind to do it again. The D.C. walk takes place in October but I’ll be finishing up my treatment then. San Diego is the last walk of the year - and who doesn’t want to go to San Diego in November?! My Aunt lives in San Diego and has done the walk for a few years (her best friend is a breast cancer survivor). So, I asked her if she wanted to walk with me and she quickly said yes! 

So now it’s time to dig out my pink gear and “Cancer Sucks” pins because they’ll be put to use once again. This year I am going to do my best to walk as much as I can but I will make sure to be kinder to my feet. If I need to get in a sweeper van so that I can walk the next day, I will. I am so excited to be participating in this event once again and to be doing it  with amazing people, again! I would love for our team to grow so please consider this an invite to whoever wants to join us!!

Each walker needs to raise $2500 in order to participate. Please consider donating. No amount is too small. You can visit my page HERE!

From there you can also view our team page to see who else I’ll be walking with and our fundraising goals and progress.

Thank you!!

One week down, 41 to go!

Each cancer has it's own ribbon color. My cancer is gold and a type only kids normally get.

It’s been six years since I had to have chemo and after my recent treatment I realized there was a lot of things I forgot or forced from my memory. Different scents, feelings, and sensations. None of which were pleasant.

I was so proud of myself that day because I packed foods that I new would not upset my stomach and remembered to wear comfortable clothing. I brought my Kindle, notebook, and even a deck of cards. I was ready. I’m a pro, right? Not exactly.

My brother-in-law, Richard, took me to treatment. We chatted for a while as the nurse got me ready and started IV hydration and some necessary meds to protect my bladder from the chemo. It takes three to four hours of this before they even give me the chemo meds. They started an anti-nausea drug thru the IV. This drug is powerful and is primarily responsible for knocking out any nausea for three to four days after treatment (in combination with other drugs). I don’t remember how long the drug was dripping but a fast, uncomfortable feeling began that stopped me mid-sentence. I thought I might be sick and asked Richard to get the nurse. As soon as he left my side my face went flush, my body went numb and my airway was constricted. I said out loud to whomever might hear that I couldn’t breath. Within seconds I had three nurses and a doctor working on me while I was taking small breaths and telling myself not to panic. We later figured out that the anti-nausea drug was the culprit. The IV form is very concentrated and it was too much for me to handle. You learn things as you go along because everyone is so different in how their bodies react to things. Unfortunately many of the times, this is how you learn.

The next day I went back to get my Nulasta shot which is a white blood cell booster. This shot is known to cause bone pain. What I remembered about that shot is that my pain was concentrated in my jaw but also affected many other areas like my joints and ribs. So between feeling borderline car-sick all the time and my bone pain which was worse then I remembered, it was an uncomfortable first four days.

But then by Friday, I got significantly better. Right now I am able to do things around the house, go out, and even go to the gym but I have to do it all in moderation. This morning, I felt a little too good and over did it trying to reorganize the pantry and ended up on the couch for a while. It was a good reminder that even though I feel almost normal, I’m not. It changes that quickly. So, this first treatment didn’t go as well as I hoped but I’m doing better. 

Lately I’ve been keeping myself busy doing random things. I still have my hands in the Literacy pot with Orphan Network so that makes me happy. I have also recently gotten into Pinterest.com and have tried random crafts, organization ideas, and recipes. I have plenty to keep me busy though - a full to-do list really. Just taking it one day at a time.

A recent quote I saw on Pinterest was Don’t tell your God that you have a big problem. Tell your problem you have a big God. I love that.

A Happy Holliday

   .A cheerful heart is good medicine.  Proverbs 17:22

Despite the craziness of the events in early December, the last two weeks have been great! I try to glean all the positives out of my current situation and having extra time to fellowship with friends and family is definitely a positive I am enjoying the most.  

Dustin and I got to spend time with my Dad and his wife in NY to kick off the multiple Christmas celebrations. Christmas Eve was spent with Dustin’s parents and siblings, and Christmas Day was spent with my Mom, my siblings and kids, and a variety of needy animals!

Then we were off to South Bend, Indiana to visit our friends who are having the same experience as Dustin and I right now. It was great to spend time with them and I got to meet a few people who I have only heard about via Dustin’s stories and of course being friends with them on Facebook. I also got to see my great friend Jeanna who recently asked me to be in her wedding party in May. I’m still recovering from trying on all the dresses!

Just for fun we spent a night in Chicago since it was only two hours from South Bend. The last time I was in Chicago was for a JIQ conference our friends put on. It was January and bitterly cold. Lake Michigan was crazy choppy and there were small icebergs being tossed around in the waves. But this time, we got a beautiful sunny day with barely a breeze. Our hotel was on the magnificent mile and we spent the day walking all around, chillin’ in Millennium Park, and eating amazing food. It was a great early birthday gift. The day we left it was cold, dreary, foggy, and rainy. Our timing was perfect!

I can’t forget all the time spent with friends in the NOVA area too - old and new! Lots of Starbucks, lunches, laughter, and even a murder mystery!

Once again, I am reminded of how richly blessed I am in the family and friends department. Life is notorious for making it difficult to regularly keep in touch with the ones we love but I have an opportunity to use all my spare time investing in these relationships before getting back into “regular life.”

So I am thankful that I had this time before starting my chemotherapy treatment. Today my super sister took me to my PET/CT scan in Washington DC to check for any chance that the cancer might have spread, which my doctor said is unlikely. Tomorrow I get my medi-port implanted at Reston Hospital. Here is a link if you’re not sure what it is (port). It got infected the last time I had one implanted and they had to tear it out, literally, without knocking me out because I had already eaten a meal. Not a fun experience so I’d love to avoid a replay of that if at all possible!

I start my first chemo treatment this Monday the 9th.

While I was trying to unclutter some areas in our home, I came across some photos of myself from my very first battle with cancer and thought I'd post a few.

In Poughkeepsie, NY

In Manorville, NY holding my Dad's childhood teddy bear.

Post chemo - love the orange couch!