Thursday, February 9, 2012

Another Pet Scan Lead Up

Tomorrow I travel to New York City for a PET Scan and a meeting afterward with Dr. M. It's been eight weeks since my last PET Scan – a rushed, unplanned scan in response to the severe pain I was having. That last scan showed a couple of new areas of likely disease involvement and increased SUV levels (hot spots) in the confirmed areas of disease in my hips, vertebrae and sacrum. It's probable – but not confirmed – that these hotter spots are lymphoma growth, but those hotter spots could also be my new immune system bursting into action and going after the Hodgkin cells in my bones. There is not an easy way to know. My medical team and I have a lot to talk about surrounding this debate and hopefully tomorrow's scan will provide some positive, tell-tale talking points to work with.

Eight weeks is actually a long time for me to go without a scan these days. I could vomit I am so nervous and on edge about it. Over these eight weeks I've gotten five infusions of Vinblastine chemotherapy. It was rough and tough on me and I'm hoping it was just as rough on the flaring areas of disease and everything has melted as hoped. These eight weeks have also brought a lot of random flaring, itchy rashes and disgusting amounts of strange white textures in my mouth. GVHD? It's not the scan itself I'm nervous about, the process couldn't be easier. What I am incredibly nervous about is what it will show and what that will mean for my future. I keep telling myself that I can't worry about what I don't know. Let. It. Be. That's much easier to write then to put into practice.

Craig has been integral in keeping me sane this week with positive distractions. It's probably the sanest I've been yet in the week before a scan. We've had a few date nights: went out to dinner, watched a movie, cooked meals together. Tonight he is taking me to a concert by an a cappella singing group that performed at his school with a promise to introduce me to the Fro Yo heaven that is supposedly Pinkberry. He loved it in Manhattan, but I wasn't allowed to eat there due to my dietary restrictions. Tonight at the new West Hartford franchise I will douse myself in dispensed flavored yogurt and fresh fruit toppings galore.

My mom will make the trek into the city with me tomorrow to make sure that I stay vertical, have a shoulder to lean on, and actually show up for my appointments. We'll catch the last day of New York City's restaurant week so hope to be able to take advantage of that and maybe a museum visit afterward. I'd like to check out the Whitney. We'll see. I'll either be in a really bad mood or a really good mood after the morning's appointments. Either way, time with my mom, the city's energy, good food after pre-test fasting, and art will probably help remedy the situation. But in reality, the entire day will probably be shot at Sloan.

This is a major crossroads. Images of standing in the woods at an exaggerated fork with six different paths to take keep haunting my dreams. If the scan shows this, then it may mean that. If the scan doesn't show this, then it does mean that. If the scan does show that, then it definitely means this. If the scan shows that but not that then this is probably, maybe, the direction we should go ... possibly. Or we could try this or that or this or do nothing or you're screwed, it's over.

Ugh. I just hope to get through tonight and tomorrow without totally getting lost in it. There will be some answers (or at least a clearer look at options) after I get through tomorrow. There is an inherent nausea and shakes that accompanies the wait for the doctor to come in the room to tell me about scan results. I can usually tell by the doctor's body language in a matter of five seconds. Then, it's just waiting to see how they will choose to make the delivery. I like it done fast: good or bad, rip the news off like a Band-Aid, please.

I've long stopped making predictions. I'll be happy with at least stable disease presence. But, I'd be even more elated if I get a coveted clear report.

Worried-about-trying-not-to-worry face

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