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!

Good News and Bad News

I always like to start with the bad news. Well, the bad news is that I have cancer. Crap, that sucks! But you knew that already.

So here’s the good news:

 I met with Dr. Spira today for the first time since my new diagnosis. When I entered the large waiting room filled with people, the first thing I noticed was the smell. Someone told me that the sense of smell has the strongest ties to memories then any other sense. So when I smelled that familiar scent, a billion little memories came flooding to the forefront of my mind. Wow, this is for real. We are really doing this again. 

I was greeted by Dr. Spira with a hug and a, “Here’s my girlfriend.” It’s true, I am his girlfriend. I am his favorite (I know he’s reading this but I know I’m right :)  He can also correct me the next time I see him if I misinterpreted something he told me today). I even got to see and hug my nurse Peggy. With watery eyes, we spent a moment reminiscing of the “good ole days” then parted ways.

Dr. Spira and me from today's visit

The good news is we have a plan and now have answers to many of our questions.

The good news is there have been a lot of advancements in the treatment of  my type of cancer over the last four to five years (it’s been 6 1/2 yrs since my last diagnosis) and research has shown that lower volumes of the chemotherapy drugs used in this protocol are just as affective. My treatment will, once again, be administered over the course of 42 weeks but instead of chemo every week, I’ll be getting it every three weeks! Yippie!

The good news is I’ll be getting less of the drug Cytoxan which is the main culprit for my plummeting white blood cell counts. This means I am probably not going to have as many emergency room visits and hospital stays as last time because I picked up something my body would have normally fought off on its own.

The good news is that they discovered that the drug Vincristine is not as affective as once thought so I will be getting a lot less of that drug. This was the drug I got EVERY week and what caused the neuropathy in my feet that I still struggle with today. 

The good news is that I can receive my chemotherapy at the Lansdowne office instead of making the drive to Fairfax. I would only have to go to Fairfax when Dr. Spira needed to see me. So that turns an hour drive into a 10 minute drive.

The good news is there is not this incredible rush to get started (like last time) so I get to enjoy Christmas with friends and family.

The good news is that my husband was smart enough to pick the POS plan and not the HMO plan for such a time as this because so far getting the benefits logistics worked out has been smoother than expected. 

The good news is that we know this cancer is treatable.

The good news is that this should be easier then last time. It still won’t be “easy” per se, but we anticipate it to be with less health complications then last time.

I think I got everything. So the way I see it, that’s a lot of good news! I am all about celebrating small victories. In times of trouble you can always find something to be thankful for.

So the plan is: Chemo, surgery, radiation, chemo over the course of 42 weeks all to start on January 4th. Thanks for all the prayers and support. I received so many messages from family, friends, and people I don’t even know. I am going to blog my entire experience here. It’s a great way to get detailed information out to those who care to know. Dustin will also be blogging as well. Here is a link to his blog.

Talk to you later!

God bless!! 

Here we go again

I wasn’t expecting to hear the news so quickly, especially after being told it would take several weeks. So when the phone rang at 7:30 this morning, I thought for sure it wasn’t the doctor. But then again, who else would be calling me that early? The doctor was nice but stumbled on his words as he told me that I had rhabdomyosarcoma, again. It was a short conversation which led to my next step of making an appointment with the oncologist.

When I hung up the phone, I let out a good cry for a few minutes and called Dustin in Nicaragua. We both knew that it was going to turn out this way, but there was still that part of me that said, “what if?”  So it’s time to get in that mode. If you know anyone who has dealt with cancer or is currently going through it, it consumes all that you do. You have to live each day, one at a time, because you don’t know what tomorrow will bring. But, like I said in my previous post, I am ready. Dustin is on his way home right now and I can’t wait to have him with me again.

One thing I DEFINITELY do have is an amazing family, friends, and church that will (once again) make this journey doable with a smile. 

Cancer does a funny thing to the people who are around you. What do you say? What don’t you say? My only request for those who are far or near, don’t worry about that when you see me. I am not easily offended and I have no problems talking about it (as you probably figured out already). So if you hesitate to call or to say hi when you see me, please don’t. It’s the people in my life that made me smile and laugh during a time when many people would want to shrivel up on the couch and be angry at the world. And if you’re really nice to me, I’ll let you rub my hairless head - it is good luck you know!

Gotta go for now...my phone has been dinging and ringing all day! I am not complaining, it’s a blessing!!

One of my favs....

Romans 5:3-5 ...we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

The big "C"

This is a longer blog entry then normal but bare with me :-)

When I hear the big “C” I almost always think of the furry blue Cookie Monster from Sesame Street that sings, “C is for Cookie! That’s good enough for me!” If you don’t know what I’m talking about, or need a refresher, here’s the link to that clip in the show - cookie. (Gotta love the internet!).  

Unfortunately, I’m not talking about cookies, or any other fun and innocent word that starts with C. I’m talking about cancer. It’s everywhere these days! Many of you reading this are aware of my own history with cancer. I was 8 months old when I was first diagnosed with Rhabdomyosarcoma in the lung. I underwent two years of chemotherapy and went on to have a life just like anyone else, filled with friends, sports, vacations, and family gatherings.

I went on to graduate high school, college, graduate school. I got married, lived in Colorado then back to Virginia; had various jobs then started teaching and getting more involved in my church. Nothing earth shattering or crazy, just a normal life like anyone else. Then in 2005, at the age of 28, after a series of events including a miscarriage, I was once again diagnosed with Rhabdomyosarcoma. This time it was in my bladder and it stumped the doctors as to whether or not it was a stem from the original (despite the 26 year gap) or a new strain (which in of itself is strange because Rhabdo is a childhood cancer). Regardless, they modified the protocol from a child to an adult and I underwent 42 weeks of chemo, 5 weeks of daily radiation, and a surgery. Despite the fact that my surgeon and oncologist couldn’t find a case like mine, they successfully treated me and resected the tumor without me losing my bladder (which was a serious possibility). As difficult as it was, God showed me a lot during this time about myself and my faith in him. So much good came out of something so bad that I can honestly say I don’t regret the experience.

It’s been over five years since my last dose of chemotherapy and life returned to normal. I guess if normal is selling your house, quitting your job, and moving to the second poorest country in the western hemisphere! But, you know what I mean.

That brings us to now, and why I am choosing to write this. I’ve been home from Nicaragua since November 4th. I have had a problem breathing from my left nostril since July. I’ve tried treating it on my own several ways without success. Prior to seeing a doctor I discovered a large growth in my nose and he tried other remedies that ultimately didn’t work and was referred to an ENT. After a CT and MRI to determine the origin of this “enormous polyp” I had it surgically removed the day before Thanksgiving. The initial report did not determine whether or not it was benign. They couldn’t figure out what it was and sent it to Harvard Medical Center to be looked at a world renowned sarcoma expert. After sending a copy of my report to my former oncologist, he called me to give me the heads up that it didn’t look good for me. He said there is a chance it could be a funky benign tumor but with my history and the type of tissue it is made up of, it’s unlikely. So now, I am playing the waiting game once again to find out for sure.  Do I have cancer again? Maybe. Probably. Hopefully not. But if I do, I’m ready.

My relationship with Jesus Christ is what gets me through my life storms (and I’ve had quite a few). Sometimes it’s hard but when I put all my trust in Him, in return I have a peace and sense of joy and thanksgiving that only he could give. He is ultimately taking care of me and knows his plan for me, even if I don’t ever know why things happen the way they do. It’s not always easy to not worry or be anxious about things. I’ll admit when I first thought this could be cancer, I told my sister I was scared and I freaked out a bit. But once I got that out of my system and refocused on God’s truth, I’ve been at peace ever since. 

So right now, we wait to hear the final word. In the meantime, Dustin and I decided to distract ourselves with a little road trip. We were told, just a few days ago, that Dustin’s best friend’s wife was diagnosed with breast cancer. We both care about this family tremendously and have decided to visit them to fellowship and encourage them. We’ll then drive through Canada, visit Niagara Falls, and end up at my Dad’s house on Long Island for an early Christmas celebration. Dustin leaves for Nicaragua tomorrow for a week to take care of some business the two of us couldn’t get to since we had to leave abruptly. We leave as soon as he gets back!

I’ll update my blog as soon as I hear something but I was told it could take up to another 2-3 weeks to get the final report. If you are the praying type, send a few my way please. :-) You can never receive too much prayer!

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. (Proverbs 3:5-6)

In a nutshell...

From L to R : Nashira, Sheyla, Karla, Mary, Brenda, and Adilia.

Last week was a busy week! Mary and I held the Adult Literacy training conference. We had a small group of five, solid women who embraced the curriculum and are now looking for students to enroll. I had to get Mary up to speed with the curriculum and the vision behind it. Mary is a sharp individual who has a passion for education and she took the information I gave her and ran with it. Her enthusiasm and love of teaching showed the minute she started to interact with the facilitators. Not only was she able to accurately teach the information, she had those teachers participating non-stop in discussion and activities. She has told me countless times that she wants to do this to the best of her ability so to not hesitate to correct her or tell her how she could do better. She has a great attitude.

The students were attentive, enthusiastic, and were good sports when we had them do wacky team-building activities. Every day was filled with serious discussion and a lot of laughter. I enjoyed watching their expressions as I told them that they are the first spanish speaking country to use this adult literacy curriculum - in the whole world. Their reaction actually gave me goosebumps. 

A quick re-cap for those who don’t know: Last year, Erin and I, went to India to be trained on an adult literacy and life skills curriculum that is incredibly successful. It has been translated into 21 different languages native to India but has yet to be taken out of the country. If I remember correctly, there was one other man in the training with us who planned on using it in Pakistan. Kamala Chiranjeevi, the creator of the curriculum, was so excited to hear that we were going to translate and adapt it for use in Nicaragua.

We originally were projecting January (after the holidays) to be the start date for the classes. We don’t want to lose the momentum we have so we are giving the facilitators two weeks to enroll students and plan to start after that. I am looking forward to the day where I can visit these classes in action!

Me and one of the graduates, Brenda!

Yesterday Dustin and I went to Betania so I could meet with the literacy teachers and to visit the farm. Dustin was taking video and I was playing with the kids. After lunch, a bunch of men from the community joined together to play a game of volleyball. Austin was playing, Dustin was shooting film, and I was playing with a different set of kids. There is nothing more entertaining for those kids then watching themselves on a video camera! I love going to Betania. I enjoy seeing the familiar faces and sounds of the village outside of town.

Right now, I am enjoying my Sunday afternoon on my SOFT chair! A good soft couch or chair is hard to come by, it seems. Well, we finally moved into our house this week and we are really enjoying the space after living out of a suitcase in a single room since we’ve been here. Living in a Miskito style house with a lot of windows allows for nice cool breezes throughout the day. It’s nice to finally be settled in.