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?

Back to the Beginning

On Monday, June 2nd, 2014, I went to Consultants in Gastroenterology Inc. to have a colonoscopy.  I had been having looser stools on and off for a few months.  In January I remember thinking, "Hmmmm, is this something I need to worry about?"  I was feeling a little nauseous, as well.  "Could this be a virus?" I wondered.  I was still hungry though, and my energy level was fine.

I decided to see if things would pass.  I work with children, and someone always has something, especially in the winter.

I think my stools were inconsistent, but better after that.  I really don’t remember.  I usually get up in the middle of the night to pee, before I have my period, a few times. Things seemed pretty normal until I started to have to get up every two hours.  I would have this pressure, and needed to pass gas.  I found I need to be on the toilet to do it, because it was never just gas.  It was annoying and didn’t feel right, so I made a sick appointment with my PA.

I spoke with my PA, Karen Schaffran, about what was going on.  It sounded like it could be a combination of things, so she wanted me to make an appointment with a gastroenterolgist for a colonoscopy.  I had turned 50 last year and was due for one. The only reason I hadn’t gotten one was that for the last few years, I hadn’t had any health insurance. Thank goodness for Obamacare.

She also asked me if I had tried changing my diet, to see if my stomach would feel better.  It was like the most amazing question I had ever heard.  Change my diet?  What an idea.  Then, by accident, I did.

On Easter, rather than the ritual stuffing, I ate a reasonable amount of food.  The next morning I felt great. Thinking over what I had eaten, I realized I had skipped the gluten foods.  Maybe there was something to this diet thing.  I stopped gluten, milk and dairy for the week and felt much better.  No more stomach ache!  I only manged to stay off dairy one week, fortunately ice cream didn’t seem to bother me.  I started having cereal again in the morning.  Some days it agreed with me, some not, depending on the cereal.  I was hoping this was the answer.

When I met the gastroenterologist, Dr. Philip McAndrew, he told me that everyone who goes off gluten feels better.  It is hard to digest and gassy.  "It's a tough way of life though," he told me.  How long can you really not eat pizza?  He was encouraging though, and suggested that many of my symptoms were also consistent with perimenopause.  There was a chance that things would return to normal after "the cleanse."  This sounds crazy, but I left looking forward to the cleanse and my colonoscopy one week later.