Wednesday, September 16, 2015

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?

Monday, September 7, 2015

Victory Day!

August 10, 2015

Today is Victory Day in Rhode Island, our annual August day off.  I have enjoyed a weekend, and still have an extra day.  Of course, the list of things to do today is long, but first on my list is a visit to Fain 3 to return my chemo pump.  I was supposed to return it on my last visit in July, but forgot to bring it with me. Somehow, I haven't found the time to return it yet.

Steven walks over to the hospital with me, and we take the stairs up to the third floor. We pass by registration since I only want to return my pump, so there is no need to sign in.  I find my way to the nurses station, and it seems very quiet. A Monday holiday is not the busiest day for chemo.  The only person I see from my team is Jen, the rest of my team is off today.  I tell her I need to leave my pump.  She is happy to take it for me, and congratulates me on not needing it anymore.  We have a short discussion about my backpack, I ask her if she thinks anyone else might find it useful.  She says she will ask around and takes it.

On my way off the floor, I decide to make an appointment to see Dr. Safran, to find out if he has the results from my PET scan.  As I am sitting at the desk, who should be walking across the reception area, but Dr. S himself!  He smiles and gives me a hug.  "I was looking at you PET scan last night, and I have some good news for you," he says.  He looks around the reception area, and suggests we should set up an appointment right now, rather than talk about this in public. He tells Steven and I that he will see us in a few minutes, and heads off toward his office and the exam rooms.

We wait only a few minutes before being called in by Bess.  This is an official visit now, so I have to get weighed and have my temperature, blood pressure and survey about meds taken.  Once that is done, we are shown to one of the exam rooms to wait.  Things are quick and easy around here today,   Dr. Safran stops in to visit us almost right away.

The scan revealed that there is no cancer growing anywhere in my body.  It is what they call in complete remission.  This is such good news.  We talk about what this means and how I can keep things this way.  There are no guarantees with anything I am told.  Many people do everything seemingly right, and it still can still come back.  A diet low in animal flesh, and no charcoal grilled foods are two things that definitely seem to help.   There is a high likelihood of recurrence, but for the time being, everything is clear.  There is a small irregularity with my thyroid, but he doesn't think it looks like anything serious.

He asks me if I have thought about taking part in the aflibercept study, and I have.  I have decided  I would like to take part in it, if I qualify for it.  It will be my way of honoring all of those people who came before me, who helped research the drugs that I took to get me this far. It seems like the least I can do.

Dr. Safran brings me a folder full of information about the drug I may get, the frequency of administration, side effects, all of the usual stuff.  Two out of three people will be randomly chosen to take the drug, the third will be monitored closely.  He tells me he has one other person who is participating in the study and they did not get chosen to take the drug.  If I think of any questions, there is a phone number on the folder I can call.

I have just received the best possible news.  I made it through everything, and so far, it has worked.  On the way home Steve tells me how proud he is of me, for getting through everything, and for choosing to take part in the study.

The way I do mini golf.                               

When I get home, it is early in the afternoon.  Alex has the day off, and we decide we should go out for ice cream to celebrate.  We go to the Lincoln Creamery, where they have the best soft serve in RI.  I get a kid's chocolate and vanilla twist with chocolate jimmies.  The only thing to make this celebration better, would be a round of mini golf, which is a wish easily granted.  We head off for the Atlantic Golf Center in Attleboro. I don't win, I rarely do, but as of today, I have already won the hardest game I had to play.  Victory day indeed!

The way Alex and Steven do mini golf.  Maybe this is why I never win?