~Saying "NO" Feels So Good~

Last Thursday was another appointment with Jerry.

First, though, to the lab to have blood drawn. The clinical trial called for lots of blood that day. Thirteen vials. Yikes. This was the first time that the lab tech has had any problem with drawing blood from my port...seems the needle was trying to suck up my vein. So I ask the tech "which needle are you using?" Response: "3/4 inch". "hmm. That's is why my chart says to use the 1 inch needle...3/4 inch is too short."

After weeks of going for blood work and always asking to make sure the 1 inch needle was used, the one time I don't ask/remind, the short needle is used. This is the kind of thing that is so tiring. Rhetorical question here, but must I always tell them how to do their job?

After a bit more fiddling around, the lab tech was able to get the short needle to draw blood.

All 13 vials full.

Good news at vitals. Lost 3 pounds since the previous week. Fluid retention is slowly relenting.

My time with Jerry went well. Everything seems fine..echo-cardiogram results unchanged and completely normal. No detectable heart damage from chemo-therapy. EKG results also normal. I am a normal girl...except that I have breast cancer. Go figure.

I asked Jerry if I can get back to normal life now. Yes. Manicures and pedicures? He chuckles. I chuckle. Don shakes his head at me. As if my normal, before cancer, life held time for such pleasures. Then Jerry responds, "oh, well wait a few weeks on those..." Shaving? "wait a few weeks on that, too". Occasional glass of wine? Yes.

Jerry tells me that I'll come back for more blood work, and start the clinical trial drug lapatinib on July 9th. I asked Jerry what happens if I decide to quit the trial. Can I go back to the regular treatment of herceptin? "Oh. Why do you ask?, But, yes. If you go off of the study, you can go back to the herceptin and finish out the treatment schedule on that. Most people tolerate lapatinib quite well, though." I feel better knowing that I still have the option, but I think my question made Jerry nervous.

I won't see Jerry again until July 16th. Oh my goodness. That is a long time from now. Good news and bad news. Jerry makes me feel safe.

He says I will also need to come in sometime between now and July 9th to have my port flushed. And then he tells me to "keep up the good work."

Wait!

How, exactly, do I do that? It's his good work, not mine.

Or maybe it's His good work.

As we leave, I stop at the front desk to make my appointments.

The woman at the desk is very friendly and we get the lab appointment and the appointment to see Jerry all set.

And then I say "I need to come in to get my port flushed." "Oh, I can't make that appointment here. You'll have to go upstairs to the Infusion Suite to make that appointment."

"Excuse me?"

"You have to go upstairs."

"No, thank you, I'm done upstairs and am not going back." She looks at me, quite confused.

I say, to myself, 'you're confused? Really? Surely I am not the first patient who refuses to go upstairs?'

But I just repeat my first response to her.

"I am finished upstairs and am not going back there."

Pause.

"Oh. I guess you can call in to get the appointment."

Okay.

I'll call.

And then I may send that cancer office some of my thoughts...like a little primer in customer service and patient emotional care.

In retrospect, I may have gained a bit of insight into two year old children.

Saying "no" feels good.

It is empowering.

And I didn't even stomp my feet.