Sunday, May 24, 2015

A Fire in My Belly

According to the Free Dictionary, "if you have fire in your belly, you are ready to fight with energy and determination for what you believe is right."   He will approach the committee with plenty of fire in his belly.

My fire is much different.  The fire in my belly starts at the tip of my tongue and reaches down my throat until it engulfs my belly.  It is not quite sore, maybe raw is a better way of describing it.  It starts soon after chemo, and lasts until sometime later the following week, but I have the sneaking suspicion it is going to lengthen it's endurance as my treatments continue.  It rages on like a forest fire out of control, unpredictable, calm one moment, flaring up with ferocity the next.  Sometimes it is accompanied by nausea, other times it simmers on alone.  

Contrary to what you would think, my body at this times craves a solution to this soreness.  It thinks that there is some food that will make it calmer, make it go away.  I go in search of what that could possibly be.  At times it is simply food it needs, and it is not particular: a bowl of cereal, a piece of fruit, and at once I am fine.  Other times, it is angrier, like a volcano waiting to errupt, growing worse, until I make the proper offering.  

Water may be the thing it needs, I am supposed to drink much more than I can in one day.  It doesn't feel good going down though.  Ice cream is wonderful, but it is not something that should be consumed all day, and very difficult to sneak eat when there are several small children about.  Milk can work, peppermint patties are soothing too. Ginger can work, but the flavor is too strong some days, I can't stomach it.

Having this feeling is eye opening.  In the past, I have eaten or not eaten when I was hungry.  The feeling would pass, I would be fine.  This is a hunger that demands attention.  If it isn't addressed asap, it grows worse, it won't go away.  After spending so much time sleeping, I spend too much time trying to figure out what the next offering to my belly will be.  This of course has it's consequences.  

Since my colon was reconnected, my belly shape is very different than it was before.  Once it was a smooth, soft, gently rounded shape.  Now it is that of a muffin top, even sans pants.  This may even out in the future, but for now, it is the shape of me.  

When my throat is raw, my digestion is sloe.  This makes my gut protrude.  The top of my muffin pushs out from my clothing with gusto.  Some days I think I have gained so much weight because my belly sticks out so much, but the scale tells me it's not so.  It seems like everything is stuck in the upper part of my gut, just hanging out for a while.  Within a few days the bulge will subside, but in the meantime there is little I can do.  It seems to be one of the side effects of my situation.

By Tuesday evening, I am tired of this.  By most Tuesday evenings after my treatment, I find I am tired of many things.  This folfuri seems to fulfill it's name on Tuesdays.  I feel grouchy and mean.  This week I decide I do not want to do chemo anymore.  I want to tell Dr. Safran that I am through, that this seems to have worked just fine and I want to stop.  I had enough of feeling tired and feeling bad.  Steven asks me if I really think this is a good idea and I tell him yes.  He asks me if I really want to tell Dr. Safran this, and I say I do.  I know this is not true, that I want to do the thing that will have the best results, but on Tuesday, I just need to complain. 

On Wednesday, I tell my daughters the same thing.  

I have taken a nap after work, from five thirty until almost seven, so I can go out and do a trivia night with them.  This is my one night out this week.  When I wake up, I have that fire in my belly even though I have eaten dinner. There is little to eat at the bar we are at, except for chips. I order a cranberry juice and decide I need to have corn chips.  Not the healthiest choice, but they calm the fire.  

As I eat my snack seeking comfort, I realize how hard it must be for people who want to stop eating but can't.  I wonder what fires they might have in their bellies.  My eyes have been opened to how your body can keep asking for more, trying to quench some unrelenting, insatiable fire that rages on. In your mind, you know the corn chips are not the answer, but your belly doesn't care, because the temporary solution is what it needs.  The chips are the answer to it's nagging prayer.

When we are fully engage in our trivia game, I feel fine.  It is a great night.  Our team consists of my daughters, their partners, Steven and me.  We are team Toaster Strudel.  It is the rare trivia night where I feel like I have made a real contribution to the team.  Note here:  I am terrible at trivia.  We manage to take a lead early, but end up taking second place.  It's okay though, we have had a great time.  The host asks us to come back because we were so much fun.  

The team we lose to is called Hitchcock's Ass Cancer.  What a coincidence that I should lose to a team with this name.  Maybe I should reconsider my Tuesday night declaration.

By the time we get home, my stomach is raw again.  This time I give it sleep.

Thursday, I wake up and look at my tongue.  It's nice and pink.  No nausea, no fire, it's going to be a good day.  

As if Dr. Safran has been hearing my thoughts, I get a message on my phone later in the day.  He will be away next Friday, I will see Megan instead.  I will need to make another appointment for a different day if I want to complain at the doctor.  I realize this is all I really want to do, so I decide against it.  I will go and get my treatment.  I will do what is recommended to keep my cancer from coming back.   I've made it through six treatments, I can make it through six more. 

I will approach my treatment with a fire in my belly.  Hmm... but no pb&j sandwiches.


Saturday, May 23, 2015

Sleepy Weekend

 Last week, after I wrote, I slept well.  I have realized that if I sleep the nausea goes away, so I look forward to it.  When I am awake, the nausea medicine helps, along with peppermint patties.  They have become my new digestive aid.  I have tried ginger which also works, but the peppermint cools and soothes my tongue and esophagus as it slides down, and feels so good.

Saturday was supposed to be a busy day, but as with my weekdays, I have learned that I need to pace myself.  Hanging out at a kids party in the late morning/early afternoon does not mean an afternoon gathering of friends is going to happen.

I was so tired after a birthday party where I only stood around eating and talking , that by the time I arrived home to pick Steve up for our get together with friends, I could only manage a hello before heading straight for bed.  I could barely keep my eyes open.  Steve went on without me.

After a four hour nap, I was able to walk over to the middle school in our neighborhood.  I went along with my friends Valerie and Luke to see a musical the drama club was performing.  Alice, A New Musical, was an original piece of work written by the drama teacher at Nathan Bishop Middle School, and put to music by a Brown University student.  It was so good, this was my second viewing of it.  I had seen the premier of it Friday night with my daughter Ayla.

I walked back home after the play, wondering if I would be able to sleep after my long nap.  I needn't have worried. I was tired enough to sleep through most of the night.

Sunday was the walk a thon day.  I woke up just before eight, which was when registration began.  I figured if Steve and I made it there by nine, that would be fine.  I wasn't really planning on walking too much, I just wanted to show my support for Dr. Safran and his research.

My friend Soli texted me as we were leaving for the bus, and asked if she could meet us there and walk with us.  She met us on Thayer Street, which is in the heart of the Brown University Campus.  From there we set off to find the walk a thon.  Since I had left the registration form with the location listed on it at home, we walked around the campus for a little while before we found it, in the quad in front of the university gymnasium.  It was supposed to be a 5k, but I figured what they really needed was the registration fee, so we paid, walked around a few times, and stopped to say hello to Dr. Safran.  That was more than enough for me and I still wanted to make it to church to the Coming of Age service at ten thirty.  We walked Soli back to her car and talked at little before we had to leave.  It had been so nice of her to come and walk with us.  I never did find my friend from Fain 3 there.

The Coming of Age service is one of my favorite services of the year at First Unitarian.  This is the time when the young people who are in our eighth grade Coming of Age class get up before the congregation and make a statement about what they believe at this point in their lives.  It is always a powerful service, which rarely fails to make me cry.

The service was excellent, but ran a little long.  As I stepped out of the church my phone rang.  My visiting nurse was already at my house to unhook me!  Did I mention I was still hooked up to my chemo?  Since Steven and I had bussed there, I asked the first person I saw who lived near me if they could give me a ride home.  Janet said yes, but sent Steven off to let her husband know where she was going, while we hurried off.  I was back at my house in no time, and the nurse was waiting there for me.

Usually I get a call ahead of time letting me know which nurse is coming and what time they will be there.  Lately there are several different nurses who are work on Sunday, so it looks like I need to just count on them being there forty six hours after I am hooked up. 

Once I am unhooked I am so hungry, I need to eat right away.  I wanted to wait for Steve, who was taking the bus home, so buy the time he arrived I was both hungry and tired.  First comes the hunger, then the incredible tiredness.  At least this much is predictable.

Steven took advantage of my nap time to do the laundry,  and I slept so soundly I missed a visit from my son Alex.  Sigh.

After another four hour nap, I got up for dinner, and Steve and I finished watching the documentary Jinxed, about Robert Durst.  Sitting and staring straight ahead seem to be what I excel at on my chemo weekends.  That and sleeping.

Recently when I was sadly looking around my house at all of the things that have gone undone, I started counting the hours I have left in a day after all the sleeping I need to do.  Some nights I sleep up to ten hours, and on chemo weekends, I take a two to four hour nap.  During the week I work between nine hours (if I sleep late, no shower, no cleaning before hand,) and ten or more if I get up early enough to clean.  It made me feel less badly about the way things are.   It is also not the case for everyday, only about ten days out of the month, but that is a lot of lost time.  I hope in the end, all of the sleep is really healing and not just lost time.

Friday, May 15, 2015

Chemo Number 6, Round 2

It is almost eleven o'clock pm on Friday night.  I had my sixth chemo treatment today, and I feel awful.  I know taking my anti nausea med will help, but that means going downstairs and getting it, yet I sit staring at facebook on my computer screen.  So much time passes, when finally I make myself get up to take a pill, and find some mint gum.  Why is it that the simplest actions are sometimes so hard to perform?
I also grab an extra layer while I am up.  Although it is warm outside, I am sitting here shivering. I don't have a fever, it's just one of those chemo things.  Hot then cold, fine then nauseous. 

When I had my last treatment, I told Dr. Safran this round of chemo has felt much harder than my last.  He asked me to tell him about what was different.  I told him I felt sicker after my treatments.  That it felt like there was a brick in my stomach, heavy and horrible. He told me he could tinker with my dosages and try to make it better.  He changed some of my premeds, switched out the new anti nausea med and gave me the one I had with the folfox, took out the steroids so I could sleep.  It seemed to work.  I wasn't up crazy late, even though I took a nap in the late afternoon.  I did go to a concert that evening, so maybe that helped to tire me out, but I slept well.  I only felt a little nauseous, but I took my ondansetron, and felt better.  I slept more in the days following my treatment than I usually do, which is hard to imagine, but I did.  The adjustment seemed like a good thing.  I still felt tired over the week following chemo, but I have realized that this is a part of my new pattern, and I need to plan for it.  One extra activity during the week, and that's it.  Even if it is just knitting with my friends, it wipes me out for the rest of the week.  I missed a meeting and stained glass, because on Wednesday and Thursday evening, after working all day, I was too wiped out.  I find it terribly annoying that it has taken me five treatments to figure out this pattern.  I realize that if I were writing about it more, it would have been apparent sooner, but at the end of my days, I am too tired to string words together.

After thinking I have made this great breakthrough with my chemo, pinning down what works and what doesn't, I wonder why I feel so horrible this evening.  I had been telling someone this week how much better having regular nausea is than that brick in the stomach variety, but tonight I feel like it doesn't matter. This regular nausea is no fun either.

My treatment went fine today, except they added peanut butter and jelly sandwiches to the menu of foods available.  Now it will be one of the foods I associate with Fain 3 that I can't even name without feeling sick.  I make a fair number of peanut butter sandwiches for daycare, so this could be a problem.  We may only get to serve them on my off chemo week.

I did meet one of my fellow chemo mates today.  We were both called to our appointment together, and she chose the pod next to mine to receive her treatment.  We started talking as we were seated, and then sat on the edge of our chairs having a conversation around the sliding partition which separated our pod.  We were getting along so well, we spent most of the morning talking.  Once we were all hooked up, we took turns sitting in each other's space. It made the hours go by much faster.  At one point she had a visitor, so I went back to my chair, and fell asleep.  This is not something I usually do, but I was feeling so tired.  When I woke up I found Carol, which I think is my new friend's name, peaking around the corner to see if I was awake.  I guess I napped for a while. 

I am a little embarrassed that by the time I got home from my treatment, I could no longer be sure of   my friend's name.  She will understand better than any one else how this could happen though, especially on a chemo day.  

On Sunday there is a walk a thon being held at Brown University to help support Dr. Safran's cancer research.  I am looking forward to seeing her there. I am not sure how much we have in common besides our treatments, but I am looking forward to figuring that out. We share a bond with where we are at this particular point in our lives, and I look forward to sharing and cheering her on from the next pod over.