During my first visit to MD Anderson, you were so sweet and reassuring. I knew that all would be well because you told me that I could call you at anytime for anything, that you would be calling me, bugging me even, to make sure that I was feeling o.k. That actually never happened.
This past week, I needed a refill on a prescription. You did refill it for me. I was so grateful, although since we never were able to talk about it specifically, it isn't really the one that I need.....and it took 2 days to happen.
Last Friday, you said that you had been calling me and calling me, that you didn't have the right number. How can that be when we have talked many times before then? In fact, I left you a message early that morning about what to do regarding my IV. You gave me some unclear instructions about asking the lab for an ultrasound stick. I know that your blackberry has caller ID.
Upon arriving to the lab, I had not heard from you, so I tried to talk to the phlebotomist about it, and of course she didn't know what I was talking about. When I saw that her name tag read "student," I panicked but took a deep breath. She turned out to do a good blood draw and I told her so.
While waiting for my infusion, I met another patient who told me that I can just go up to the 8th floor without orders to get an IV by the "expert" in the house. Really? Fabulous! When I met with you later that day and I mentioned this as an option, you said, "yes, you can do that." Why didn't you mention this to me after the past 3 infusions have involved complications with my IV? Seriously, my arms are starting to look like an IV drug user, which I guess I am, just not by choice.
After learning that my infusion would be postponed, I left feeling lost and worried. You seemed confused by this as well.
Wednesday morning I had my blood drawn at U.T. Since they originally said results would be ready in 24 hours, I begged the clinic to put a stat rush on them. They kindly agreed and within 3 hours, I got confirmation that my results were in and had been faxed to your office. I promptly called you. You explained that the report was on the fax machine in another building, you would have to email over there to get an answer. You said that you would call me later that afternoon to let me know the results.
You never called.
Not even to say, I don't have an answer for you, but try not to worry.
Or, I know that you are fighting for your life.
I know that patients with ocular melanoma with mets to the liver are fragile and I know that this is a special trial and you want to stay in.
I know that if you are out of the trial your options include heavy duty chemo or flying to Philadelphia for unknown treatments up there.
I know that this would interrupt your life in a different way than what you are experiencing right now.
I know you don't want that.
I know you are scared.
Thursday morning came and still no call. I stopped leaving messages on your voice mail. I called the office instead and talked with the receptionist and scheduler, who left messages for you. I got the most compassion from the operator that day. Perhaps the lowest paid worker on campus.
I had my phone by my side all day with the ringer on high. Believe me, this is a big deal. I usually forget my phone and have the ringer on vibrate, which doesn't do a thing since its either buried in my purse, left on my desk, or in the car. At 5:00pm, you sent a message directly to my voice mail, you did not call to talk to me. Your message went like this:
"Hi Ms. Hallmark (I have pleaded with you to call me Kara), I'm sorry that I haven't called. Dr. Patel wants to keep you on the current protocol so you will come next Thursday for your scan as scheduled. On Friday, you will meet with Dr. Patel and discuss your scans. If you show no new disease with stable tumors or only slight progression, then she'll order your next infusion for that day. If not, then she'll discuss other options with you at that time. Call me as soon as you get this message."
It is now Friday at 11:28, are you waiting for my call? I don't think so. Do you think that I'll call you before I come to Houston next week? I don't think so.
Exhausted from the waiting, wondering, worrying of it all. I thought that you were the one to help me through this from the clinical side. I was wrong. Now who can I turn to in that giant cancer system?
On a happier note, I have received so much love, support, and encouragement from my family and friends. I am full from your love and I can feel you lifting me up! Thank you from the bottom of my heart. Grateful for my family and friends. Love. Peace. Today. Kara