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


  1. Hi Karin-

    I stumbled across your blog by chance about a year ago and haven't been able to stop reading as your saga has unfolded. As a medical student at UConn (who can totally vouch for the West Hartford Pinkberry, by the way) I'm constantly amazed by how resilient the human body is. With such a vivacious spirit behind it & your sister's graft raring to go, I'm absolutely positive your body will come out on top.

    Sending good thoughts your way and crossing my fingers for happy news!


  2. Karin - you are amazing...and you have people from around the world sending you good vibes. Enjoy the frozen yogurt - deserve the biggest bowl of goodness you can handle!

  3. hoping to read some wonderful news tomorrow. I hope the band-aid is a fabulous news band aid.

  4. Know that you are being held in the arms of all who follow your precious words! All good wishes, all good thoughts, all positive energy- all the BEST!!!!!!! Tomorrow and always. We are with you all the way!

  5. I'm right there with ya, sister. My case gets presented at COH tomorrow. Today I had a bone marrow biopsy. These are great times. The anxiousness, the melancholy, the feeling of putting one foot in front of the other - it is something we all share. You're not taking these steps alone. But walking in the footsteps of so many of us who have also made these trips. Many, many forks in the road. Hard not to speculate. Impossible to predict. Be in the moment and this too shall pass.

  6. Karin,
    You are the bravest sweetest lady to share your fears and joys with the Ups and downs of this disease. Your words of your medical journey of the good and not so good times are written in a beautiful positive way. You continue to give hope to anyone who must travel down this same path. You have a very special gift to make your readers feel for what you are going thru on a daily basis. A very special gift and touch to have. Be assured you are in our prayers and sending tons of strong positive thoughts to you and especially for tomorrow's appointment. Hang tough. You have proven what a super good fighter you are. I hope you can feel the hugs and love by all who read your blog as well as your family and friends. Wishing you the best results ever!

  7. I am always amazed by your courage and strength. You are truly inspiring. Wishing you all the best today. May your test results be good ones. God bless you.

  8. I will be thinking good thoughts for you and Craig. Please do your best to not stress too much before the results from the scan are given to you.


  9. Sending thoughts and prayers your way, Karin. Hang in there--hold on to yourself.
    I am a writer and cancer survivor, too. Remember to hope.