Where I am...

I had to tiptoe back into Cancer World last week.  I spent every day at Roger Maris getting my "State of the Union." 

In all honesty, I may be out of touch with what is happening with my cancer.  As I prepared last week to see Dr. Panwalkar, I knew he would ask what my questions were… um… hmmmm.  Did I have any?  I haven't given it much thought.  

Its kind of funny, my cancer has been the least of my worries these past few weeks.  

I've been wrapped up in my frail and fragile mom, who is trying so hard.  She had filled with fluid around her lungs and had a thoracentesis last week to remove the fluid so she could breathe again.  I felt so bad that I was at Roger Maris every day last week, and mom had no scheduled times I could try to work around.  She was a trooper, never complaining about any of it, and quickly befriending the ones who went with her.

All of this has me deep in thought when Dr. Panwalkar strides into the room, last Tuesday.  He smiles and then reaches for my hand and holds it while smiling at me and saying hello, and how are you?

I smile right back and say, "good and you?  You sound like you may have been sick?"   He has an upper respiratory something- so his voice is more raspy than usual.  He says he has some of the "stuff" going around from his kids- just a virus and he is fine.

I smile, as he is assuring me he isn't contagious, but I already know that.  I was more concerned with him feeling okay.  I so rarely ask personal questions about him.  Any communication outside of medical questions, has to be delineated amongst subtleties.  

He mentions my blood work and I tell him it looked pretty normal to me.  "Yes," he says, "except your tumor marker went up to 40."  And then he moves the computer screen to show me a graph of my past tumor markers and I can't help myself, I burst into laughter, as Dr. P starts to chuckle, then laughs too, as he shakes his head side to side.  Clearly we are on the same page.  

The lines are all over the place- up, then even, then down and then shooting up again.  Its a maze that sort of replicates exactly how I feel.   But it does little to tell us what my cancer is actually doing.

He asks if anything new has cropped up?

I tell him I have noticed an area that seems thicker, right by my mastectomy scar. The healed one.  (Makes me smile every time I can say that.)  He grabs a gown for me and says he'll examine it.

He thoroughly feels along my chest wall, along the scar and all around.  "I feel nothing noticeable to me," he says. " But its been 6 months since we've had a scan.  Lets get you in for a scan."

So I then decide to broach the subject of what treatment he may consider if the scan does show something?  He mentions a new pill on the market, with some side effects like Xeloda, but one to consider.  He also mentions another hormone treatment taken in combination with another pill.

Or we could go back to Eribulin, the one I had before for a few rounds.  It shrunk my mets in a few rounds.  Then my hair fell out.  Then we stopped it- as my counts plummeted.   

I like to see where his thoughts are going.  And so as long as we're talking treatments, I decide to ask him about his thoughts on my brain mets.  

I've been researching options.  I've been reading up on something called Intrathecal Herceptin.  Essentially, they surgically place a reservoir in your head, called an Ommaya, and then they inject Herceptin right into the fluid around your brain, since most chemotherapies cannot cross the blood brain barrier.  

He rolls his chair back and I can tell he is turning this idea over in his head.  I ask if they do this kind of procedure here at Sanford.  "Oh yes, with other cancers its quite standard.  We treat some types through lumbar punctures, or reservoirs."  

"Let me read up on it, not many studies on this that I know."  

"Yes," I tell him.  

I dress quickly while he waits in the hall.  Then he walks me to infusion.  He ushers me into a seat off to his side, and I hesitate for a moment, turning to look at his face.  He looks back at me and smiles again, as he reaches for my shoulder and squeezes it, as I simply say, "Thank you."  He nods, and saunters off.

Its merely a day later and I am called with instructions for my PET scan that was scheduled for the next day.  I am jaw-dropping shocked.  It often takes days just to be approved.  But I was both approved and scheduled without my knowledge.  

So early Thursday I had my PET scan.  I prayed for everyone who came to my mind and made it all the way through.

Results coming soon…  

So much more to share.

The heartbreak of a son…

A job offer… (!)

And one of the best Valentine's presents ever.  When your baby sends his Spud cupcake with his hockey number on it, from Walker, MN, all the way home to you.  

Its still the smallest things that say "love," to me.