Monday, June 13, 2011

Slice and Dice

 I had been nervous about my Doctor’s appointment for days before we got the plane home from Barcelona - the appointment was supposed to determine the results of the whole Interleukin 2 treatment that I’d been through in April.  As far as I knew the Interleukin 2 had done some good.
I had a partial response with the IL2, it had shrunk my lung and clavicle tumors down to nothing, though it didn’t seem to be diminishing the tumor on my leg.  The night before my appointment I was surprised to find a voice mail on my phone from my oncologist urgently asking  me to phone him back before 10 PM.  I pounded the number pads on my phone hoping it wasn’t too late to catch him. He sounded relieved to hear me, and proceeded to tell me not to bother coming in for my appointment. He wanted to attend a seminar that day and he was re-setting his appointments. He asked if my tumor had gotten any bigger. I said, Yes, it had. He let out a great big, bottom heavy sigh, and said that if the tumor was bigger, there was no point in me going through another round of Interleukin 2. His diagnoses was being made over the phone mind you, and reported by an unqualified person, me! He began rattling off the other alternatives, and as he did, I came to the realization that these were not really options that were viable for me. Everything he was telling me, we had gone through before, and came to dismiss them in the last few months.
I’ve written previously in this blog that Yervoy is not an option for me because of the high cost, and the fact that it’s not covered by my insurance. The second option’s problem, is the fact that I’m not eligible for any clinical trials, because I have two types of cancer.  Clinical trials need people that can be easily categorized, so that the trial’s studies are 100% reliable. I have far too many variables going on to be included as a subject in any clinical trial. It seems my oncologist forgot this fact, or maybe he was just engaging in some very wishful thinking on my behalf, after all, the criteria of clinical trials are ever-changing. There was a lull in our conversation, then I asked him if it was possible for me to have the tumor on my leg removed, and have Interleukin 2 again to wipe out the spot on my coccyx bone. He said he’d talk to my surgeon, while also seeing about the other options. It didn’t look good to me, but I let him go to work, checking out all the avenues and did my best not to worry.

I’ve been calling every week or so to see if my insurance will cover the Yervoy (and, nope!) Also, my oncologist emailed me the day after our call, to say that the clinical trial he was thinking of wouldn’t accept me - Hmmm, as I suspected. He said in the email that he would set up an appointment for me to see my surgeon.

The days that followed were dark ones in my mind. It was hard to move past the idea that I was just being presented with really just one option - surgery.  In my mind, I was beginning to lose hope. Was my oncologist really saying that there wasn’t any future treatment available to me? It felt like it.

The days dragged on for Dan and me. The carpet of hope had been yanked from under us, the tension was rising.  I couldn’t wait to see my surgeon, who if I could have it my way, would be the doctor in charge of everything to do with my illness. He’s funny, comforting, and very talented with a scalpel. After 4 times under his knife, I can always expect minimum scarring. Not to mention that his team consists of my favorite nurse, who is a shoot from the hip, straight talking, don’t ask unless you really want to know kind of gal. The kind of person I need on my side.

Dan waited with me in the examination room. Always my ‘Rooster’, always my rock. The doctor arrived all smiles. After greetings, I lifted the edge of my gown to reveal my leg lump and said with a roll of my eyes, “It’s gotten bigger!”
 He said, “No it hasn’t!”
 Me, “Yes, it has!”
He, “No, it hasn’t. It’s only changed shape.”
Me, “No.”
He, “It’s protruding more, that’s all.”
Me, “How do you remember how big it was three months ago?”
He, “I remember.”

I quit arguing and happily accepted his opinion that it had only changed shape and hadn’t gotten bigger. I knew that by accepting his opinion my options would be better. I would be able to ask my oncologist to offer up the Interleukin 2 again for the one remaining spot on my coccyx bone. I was already formulating the email in my mind as we wrapped up the exam. It was going to be hard not to use all caps in attacking Doc Onc’s bedside manner, and his horrible habit of ending a conversation with something that tends to drain the hope out of a person. A sentence like: “We’ll be able to figure out a solution for you.” Or, “It’s nothing you have to worry about.”or, “You have plenty of time to sort out treatment options.” would be welcome at at time like this!

As it stands now, I’m doing the ‘Slice and Dice’ option.

The Slice: I go in for surgery on Tuesday the 14th to remove the tumor on my leg. It will be the 5th operation I’ve had since December 2010.

The Dice: (As in throw’um, and hope they come up lucky 7’s) We wait and see if the coccyx bone spot goes away on it’s own or shrinks from any lingering Interleukin 2 I may have floating around in my body. I’ve also got my fingers tightly crossed in hopes that I don’t develop any new tumors anytime soon.

I’m not very worried about the surgery tomorrow. It’s an out patient kind of deal - though I do have a bed reserved, just in case I need pain management; and even then it would just be an overnight stay. Once I heal up from the surgery, discussing having more Interleukin 2 will be very high on my list.

Lastly, on an everlasting note, my surgeon asked me if I would sign a consent form to let the hospital's research team have a slice of my tumor. I asked what for? He said that the hospital may try to grow my tumor’s cells in a petri dish to do an ongoing study on them. "Ha!" I thought, all the clinical trials would be begging for them!" “Sure-thing!”  I said, “Who knows, I could be the next Henrietta Lacks!”


  1. in harmony with your innerds.what can you tell the wacky doctors?it seems like they adopt a persona,their own mixup of personalities they've seen or whatever,and sit comfortably in their the disorderlies/the fat boys.or alan alda.i'm glad you and dan are there can make your own world as you've always done.all my love/kick it's ass.-g

  2. I'm so glad it wasn't bigger! Is there any indication that a change in shape is better or worse? As far as Yervoy: I am not familiar with the drug, but is it very experimental? obviously I am elana-come-lately to the scene, and you have probably thoroughly explored all your options, but have you looked into state medical insurance appeal processes? Depending on the state you live in insurance companies sometimes can be mandated (forced) to provide coverage for experimental medications and/or treatments. Have you spoken with other oncologists? I'm not trying to be a pest, but I want to make sure you get only the best advice and care. I hope the surgery was a complete success, and that all your worst fears will be allayed soon. Love, Elana