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)