Thursday, July 23, 2015

Hibernation: June 26th to the 29th

It has taken me nine treatments to figure out the best way to deal with folfuri is to sleep through it.  Not because I feel tired, but because it feels better. My body must be tired, because I close my eyes and fall asleep, but I don't feel sleepy.  I just feel major league crappy.  I don't need medicine, I don't need food, all I need is sleep.  Sleep four hours, get up for two, sleep some more.  The world can march on, just let me sleep.  I can sleep all day, and then sleep all night.  How is this even possible?  I can get through this because on Monday I will feel better.  Only this Monday, I don't.  I get up to start my day, but after a very short time, it is apparent this is not going to work.  I need more sleep.  I call in help, and go back to bed.  Finally, by Tuesday morning I begin the slow ascent back to feeling unchemoed.

On Friday, during my chemo session, the medical imaging department left a message on my phone.  It is very vague, saying only that my doctor has ordered a test for me, and I need to call back to make an appointment.  I don't hear this message until Tuesday, because I have been sleeping all weekend.  I don't know what kind of test my doctor has scheduled, because we didn't talk about any new tests.  I know I have my pet scan scheduled for Thursday, but I wasn't aware of any new tests.

I call back and reach the automated operating system.  It is very unhelpful.  It expects me to know what kind of test I am calling to schedule, but the person who left me a message didn't say what type of test I am supposed to be scheduling.  I press the number for the pet scan department hoping they can help me.  It turns out Blue Cross has refused to pay for my pet scan, so my Thursday appointment is cancelled.    They will let me have an MRI however, so I schedule one for Sunday, July 12, at 8am.  My appointment with Dr. Safran is on the 14th, so there will be time for him to get the results before I see him.

I put all of this out of my mind and get ready to enjoy the 4th of July weekend. 

Steve and I need to pick my vacuum up in Warwick right after I get done working on Friday.  It has been in the repair shop for three weeks and it is finally done.  If I don't pick it up, I won't be able to get it for another week, and I really can't wait that long.  With a sandbox in the backyard and lots of sandy feet and shoes in my house, it has been a long three weeks.

Since we were in Warwick, and I was feeling pretty good, but chemo hungry, meaning I needed food right away or I'd soon feel too sick to eat, I suggest we try Iggy's.   I'll admit to feeling kind of brave about this, given my last experience there, but I don't want to be afraid to eat someplace my family loves.  It turns out most of Warwick goes to Iggy's on the 3rd of July.  There are fireworks on the beach and people start to get there well before the sun goes down.  In the end we were brave to go there for a completely different reason.  The line to order stretched down the sidewalk past the playground and toward the beach. Having stood in this line before, we knew that it would go quickly, and decided to go for it. Steve parked the car while I got in line.  This line leads to a walk up window,  where you order, get a number and wait for your order.  Iggy's has been on Oakland beach for years, and they have a very good system.  It moves quickly, and since you are out on the sidewalk, there is plenty to see and hear, and before you know it, you have your food.

I was just getting to the edge of where hungry turns to sick when I was next up to to order.  When they called me up, a man stepped in front of me from somewhere else.  I politely told him where the end of the line was.  He looked back in amazement, as if noticing this huge line for the first time.  As he shrugged his shoulders and walked off, I laughed at his audacity, and my own as well.  Don't mess with someone who is chemo hungry!

Steve and I walked back to the car and ate our dinner.  It was the easiest and warmest place to eat.  And the chowder was everything I had hoped it would be. 

Saturday, July 18, 2015

The Last Chemo

June 26, 2015

This is the day of my last chemo session.

I am so ready for this day, although it is hard to get ready to go in for my treatment.  There is this huge psychological piece of chemo that is really difficult for me to deal with. There are sounds and smells, even thoughts that go along with all of this that make it hard for me to get to where I need to be; at the Miriam, Fain 3 at 8:00am this morning.  I fight all of the fear inside my body, and get myself there on time.  This is the last one, this is the last one, has become the mantra playing in my head.

I walk myself over and manage to get in on time.  I had wanted to bring the nurses a treat, but didn't leave early enough to do so.  Another time, I think and then remind myself that this is the last one. I don't need to come back for more of this.  What a strange thought.  For the past YEAR, as it is two weeks shy of when I started my first treatment, I have been coming to this place every other Friday, with only a short break for my ostomy reconnection.  It has been a time of reflection, discovery, and  focus.

 I have been with the same group of nurses for this entire time, with only a few exceptions. One nurse, Cassie, left for another position in the hospital.  The other nurses on my team, Carolyn, Jenn, Tracy and Faye, have been a constant source of support, besides being there to make sure I get the drugs I need.  They have all listened to me explain and complain about how I have been feeling.  They have adjusted the IV pumps that push the medicine into me, and brought me warm blankets when I was cold.  They are patient, and incredibly kind. It makes me somewhat sad to be saying goodbye to them, even though I can stop by to see them if I need to.  I know this is probably unlikely though.

I am disappointed Faye is not on today.  She has been my main nurse, from day one.  Faye has taken good care of me, we have shared bits and pieces of our year together, and I will miss hearing about what she has been up to and how her family is doing.  I am Tracy's patient today.   When I choose my pod, she tells me she will make sure Carol knows where I am, and saves the one next door for her.

There is a long wait for me to go in to get my vitals taken this morning.  Even though I was one of the first people in, through some mix up, I wait for a long time.  I don't really mind.  I don't have anywhere else to be, and my friend Nancy is coming to sit with me today.  She arrives before I am called out of the waiting area, so she can accompany me in to the exam room and meet Dr. Safran.  He congratulates me on making it this far.  It turns out that most people aren't able to tolerate so many treatments.  He is happy that I look good and that my new goal is to getting strong again. Ever since the snowy winter, I have been making little effort to exercise.  I have this funny shaped belly now that I am not happy about, so I am going to try and exercise it away.  At least I think I am.

During this visit, I ask him what the chances are of my cancer coming back are.  I am somewhat taken aback when he tells me it is around eighty percent.  I am disappointed that it is such a high number.  He tells me that it is really difficult to know without a doubt if we have defeated every cancer cell. I am scheduled for a pet scan on July 2nd, so if I call the next day, he will be able to tell me how things look, if the cancer is in remission or not.  I also have an appointment for the following Tuesday to go over our new plan.

I ask if there is anything I should be doing to keep the cancer at bay. There are so many unknowns with this disease, but two things that seem to be consistently linked are the consumption of red meat, and charbroiled foods.

When I get back to my pod, Carol is in her chair next door.  I pull the dividing wall back to open up our two pods so we can talk.  I introduce her to my friend Nancy, and we sit all sit and talk until it is time to get hooked up.  At one point the lunch Lenore, the lunch lady, and an new assistant, come by to offer us some food.   Of course the thought of it makes my stomach lurch, but when I realize I can take mine and give it to Nancy, I quickly ask for a turkey sandwich and then wait until they leave to hand it over.  We all look so cozy there, like we are having a little party, that we need to remind the lunch ladies that Carol is a patient deserving of lunch too.  I guess this is a testament to how good we both look!

As I sit in my chair, I start to feel dopey and not very well.  It is so good to have the distraction of a friend to help me get through this.  We talk and I try to ignore how rotten I am feeling.  In what has got to be one of the best cases of good timing ever, Steve walks in just as I am getting ready to leave. I give Carol a hug and wish her well.  We have exchanged email and phone info so we can keep in touch.  I give each of my nurses each a hug too.  I know that at some point I will probably see them again, since I will have visits with Dr. Safran, and then possibly other kinds of treatments, but this is the last chemo, hopefully ever.

Nancy has driven over, so she gives Steve and I a ride back to our house, where I can't get to bed fast enough.  As I lay in my bed with a pillow covering my eyes, I see lines like cross hatching.  At one point I feel as if I am seeing all of the lines around the iris of my eyes, when it occurs to me that I am probably having a migraine.  My head doesn't hurt, but my stomach feels awful.  I have decided not to take the nausea med this time, because the last time I opened the bottle, the smell of it made me feel like throwing up.  I wasn't feeling any better or worse than I had when I was taking it.  The only thing that would make me feel better for sure, is a good long nap.