Tuesday, August 16, 2011

Muddled Hope: Oscan Test

Editing Note: The above picture has been changed from the original post because THIS is really what an Oscan machine looks like... before that big block looking thing lowers down until it almost touches your nose.

After a lot of invaluable input from family, friends and fellow noid survivors, Gary and I decided to go ahead and keep my appointment at Dana-Farber tomorrow for an Octreotide scan (aka Oscan). After we made our final decision, Gary turned to me and said, "I don't even know what to hope for anymore... I'm not sure if we want the test to come back positive or negative."

I know what you're thinking... how can you want the test to come back positive for cancer? Well, here is the problem - regardless of whether the Oscan test shows that I have carcinoid syndrome, or it's another phantom disease making me sick - there's still a silent mutiny going on inside of my body. If it's related to the carcinoid, at least the enemy has a name... and we have a couple of weapons in our arsenal to fight it. If it's not the cancer, we have no immediate course of action - just more specialists and tests, pain and frustration.

The other tricky thing is that you wouldn't know by just looking at me that I'm sick, so a "positive" result would make me feel... well a little less crazy. Every time I'm sitting across from a new doctor - he inevitably looks at me skeptically after I describe my symptoms - like he just can't believe that this athletically built, happy looking girl (with all her hair) can really have anything all "that" wrong with her. It's like I'm at my car mechanic's garage, trying to explain a weird sound my car is making, and my mechanic is looking at me like I'm nuts.

One of the blogs that I follow is The Cancer Culture Chronicles, which details the journey of a very brave (and talented) author in her battle against breast cancer. Recently, she wrote a post "Look at Me" about this very phenomenon:

" 'You just wouldn't know it to look at you,' clucked Nurse Lovely as she drew my blood and I was explaining the excruciating pain I was experiencing in my left arm and shoulder area. Pain so strong it had awoken me from my sleep several times that week.

I've heard this expression many times, and I'm never quite sure how to respond. The thing is, pain for the most part is invisible, until it causes our facial features to contort, and our eyes and bodies to grow weary with exhaustion." The Cancer Culture Chronicles

So much of what is wrong with me (including a lot of pain) is also invisible. Every day activities - such as climbing my condo stairs, have become difficult mini-battles.

These few little steps used to be a non-issue; now, they are my nemesis. Other small "changes" I've gone through in the last 8 months - that are invisible to the outside world - include:

- sleeping in two towels to try to sop-up some of the perspiration from my severe night sweats
- scarfing down nausea pills when the cold sweats and spinning come on
- regularly taking my temperature to monitor a never ending series of low-grade fevers
- constantly checking my heart rate at the gym to make sure it doesn't suddenly drop to 50 bpm (usually it does this after I hit 140 bpm)
- having to stop and rest - a lot
- making these little whimpers of pain every once and awhile... that just squeak out.

While most of the world aren't privy to this new reality, my friends and family are - and they tell everyone (including me), "I just can't explain it - but she's sick and weak." Their confirmation is comforting, as if they are sitting next to me at the garage with my mechanic saying, "yup- I know that car really well too, and something isn't working right."

So my big question is which girl will the Oscan detect tomorrow: the one who at first blush seems absolutely fine, or the one whose body is slowly deteriorating a little more each month? Will the Oscan come up with some answers, or just tell us to "go fish" again? Whatever it shows, I guess it's good news: negative = no more cancer; positive = a couple of treatments that might make me feel better. I suppose we will just have to hope for "the best"; whatever that may be.


  1. I am definitely not envious of the boat you are in....the not knowing boat. I was there a few months ago, and I was relieved to find out that I wasn't crazy. The bad news of course was that I had carcinoid, but at least we had a diagnosis and could finally start moving in a treatment direction. Hoping that they figure out soon what is going on with you.

    Good news about the Oscan: you can bring an iPod to listen to! Definitely comes in handy during the longer parts of the scan, but the other good news is that you get a few breaks during the long scan. Good luck and I know you'll keep us posted!

  2. I know exactly how you feel. You are truly in your thoughts and prayers. As kristin said, the not knowing is the killer. Just like me, they still dont know about my rapid pulse. We are going to get through this...

  3. I wish you...answers, clear answers, to know where you stand, then treatments can start. Thinking of you.

  4. I hope that it went well for you and that the results are "good." I put good in quotes because for those like us the word good has many definitions.

  5. Thanks everyone! I really needed the boost :)

  6. I hope your scan went well and that it will help shed light on what might be happening that causes the symptoms. I know that Not Knowing is the most difficult and stressful.

  7. Marlena- I was diagnosed with a carcinoid tumor following an emergency surgery for appendicitis last summer! I too had a right hemi colectomy & lymph node removal. All of my treatment has been at MSKCC with Dr Reidy and Dr Temple. Both have them are AMAZING and I think you will love Dr Reidy when you meet her in September! I hope she has some answers for you, I will be sending you good thoughts!

  8. I am very anxious to meet Dr. Reidy - thanks for the well wishes!