We Have a Winner?

I get the call on August 12th, two days after I find out that my cancer is in remission. I have been accepted into the study with the drug aflibercept, and I have been randomly chosen to be in the group that will be receiving the drug. I think this is good news?

There is a problem however: I am scheduled to start in one week, on August 19th, the same day Steven is scheduled to have a colonoscopy. I have been trying to get him to go in for this test since I was diagnosed with colon cancer. He is very nervous about it, not because of the procedure, but because it involves getting a needle. He is scheduled to go in around 11 o'clock, and the 1 o'clock appointment they want me to be in Fain 3 for is cutting things too close. Initially I ask if I can come in later, but am told it is a very busy day, and rescheduling will be difficult. I keep the appointment and think about it for a day. I call back and let them know the reason why that time slot will not work. It takes some time, and after a bit of discussion, I get rescheduled to a 3 o'clock appointment. I am a little annoyed, since I am volunteering for this, that it is so difficult to get some cooperation, but in the end, it all works out.

I need to go in to Fain 3 on Friday, to sign papers stating I want to be in this study, what to be expected, what is paid for by the study and what is not. Since I have already been given copies of these papers in advance, I know what they say. I read them again quickly before I initial them. I get to ask more questions, give a urine sample, some blood samples, and have an electrocardiogram.

I will be getting the infusion through my port, in the same area in Fain 3 where I got my chemo. I may even have Faye as my nurse.

Since I had my last infusion is July, I have been slowly coming around to feeling undrugged and more myself. I still have a small bit of neuropathy left over from my folfox treatments, but for the most part, I only notice it when I think about it. The pain I had been feeling in my legs when lying in bed has gradually faded away, and I don't need to have a pillow under my knees any longer in order to sleep. I can sleep on my side as much as I want to now, and snuggle into Steve when the nights are not too hot. This is something I have been missing a lot. Sometimes, I can't sleep any more during the night. It is like I slept so much when I was on chemo, that my body doesn't want to stay in bed a moment longer. I needed more and more sleep over the course of my chemo treatments, and it was really hard to get up some mornings. In the beginning of August, my son Alex and I started walking the Boulevard at 5:45 in the morning. The exercise has been helping me sleep, and I have been feeling stronger. Sometimes, we even run, but then I am so sore the next few days, I am not sure it is worth it. It feels nice to be able to run though, because I haven't been able to do it consistently for so long, if only I could get my bounce back.

As my awareness of time realigns with that of my drug free existence, there is so much that I have let slide in the last eighteen or so months. I wonder if I will ever get caught up. Not that I ever was, but when I open my eyes and look around, it's like Whoa! There is a lot of sliding that has been happening here!

Even though I have given serious thought and discussion to taking part in this study, I am nervous. There are so many unknowns, and, once again, I am going to start taking drugs which might not make me feel so great all the time. Am I crazy for doing this?

June 7, 2014

Here we are, two days from my operation.  It has been a long, slow week, finding out a little, waiting, finding out some more.  More waiting, no eating.  Way to make the waiting seem longer.  I know that if I were to eat, it would undoubtedly make me feel worse.  And really, scarily, not eating is not that hard.

I don’t think my surgeon, as positive as he seems, thinks things look good for me right now.  It is expressed in small ways.  Not in anything he says, but the way he presents it.  It is in the nervousness he hides when he asks me what I know about my condition.   “Hello” he says extending his hand.  “I am Dr. Lentrichia.”  I can only remember lenticular after a while, which is a horrible plastic 3D effect we have on some our puzzles at daycare. He restarts our conversation, with another handshake and introduction.  It should help me remember his name, instead, I just think he is nervous.

“I just met these nice people,” I imagine him thinking, "and here is what I get to say to them."

Steve is nervous and jiggles his leg, like he is going to blast off at any moment.

I smile.  What else can I do? 

He blurts it all out.  "You have a mass in your colon, that is most certainly malignant.  It has spread to your liver.  You have stage 4 liver cancer."  He gives me medical name.  I don’t remember it. Does it matter?

He tells us our first order of business to get the mass out so I can eat, digest, eliminate waste.  The way to start is to have only liquids this weekend.  I am worried about my weight, it is down to 140 on my 5'7" frame.  I am looking scarily thin.   After a cleanse last weekend and a tender stomach after my colonoscopy I wonder if I should try to gain some weight.   No time to gain he says, he needs to operate on Monday.  

No problem.  I can do it.  It actually feels pretty good to be so empty.

He tells me he wants me to get an upper respiratory ct scan in the hospital.  This doesn’t  sound good to me.  I don't ask why, but I do look over his shoulder while he is doing some paperwork, and then scan the radiologist report.  There may be cancer in the lower left lobe of my lung.  I wish I hadn’t looked.