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.

Monday, June 22, 2015

A Bad Idea

This is a blog I had started shortly after May 29th.  I haven't been able to finish it until today, Monday June 29th.  It is a leap back in time, and some of the information in about my treatment is now out of date, but I have left it as I had started it.  Sorry if it causes some kind of time warped confusion.


Friday, May 29th was my seventh chemo treatment. Seven down, five more  to go. I went courageously, knowing I would come out feeling much worse than I went in.  As I start to write this, my stomach churns at the memory of it.

My new chemo friend, Carol was there. I was afraid I might miss her when my appointment got changed to later in the day, but hers had been changed also.  Her pod was across the room, on the other side of the nurses station.   When I arrived, she was in the area where we wait to have vitals taken before a visit with the doctor.  Chemo requires a lot of waiting, reception room waiting, waiting for vitals, waiting for the doctor, waiting for your chemo to be mixed and sent up to the cancer floor, waiting to be filled with the chemo before you can leave.  It is nice to have a person to talk to while all this waiting is happening.

By the time I get to the vitals area, Carol has already been called in.  A new patient starts talking to me right away when he notices my port.  He is in for his second folfox treatment today.  He is a guitarist, and worried about losing the sensitivity in his fingers.  It will be interesting to see how things progress for him, if we cross paths again.

Dr. Safran  has another conference this week, so appointments were pushed later to make it possible for all of his patients to visit with Megan.  When it is my turn, I tell Megan my concerns, but there really isn't much she can do about things.  She can't tinker with the meds the way Doctor Safran can.  I tell her about the raw feeling I have from my tongue to my belly, explain the fire in my belly, and how it happens in the first few days after chemo and into the following week.  She hasn't heard anyone describe this problem before, but suggests it could be thrush. She writes me a prescription for a mouthwash.  I am dubious about this diagnosis, but I will give it a try.

On my way back from visiting Megan, I find Carol, and stop by to say hello.  She is feeling a little down today.  We talk about things, and I think she feels better after.  For me, once things are spoken about, they often feel lighter and easier to manage.  I hope she feels the same way too.

The nurses are happy to see us talking, they like it when patients get together and share their stories.  There us a deeper level of understanding from someone who is going through a similar experience, but unfortunately the set up of the floor makes it difficult.

I tell Carol I'm going to go back to my pod to see if my premeds are ready yet. I tell her I will come back to visit when I am hooked up.  As I sit and wait, the smell of the room makes me start to feel nauseous.   Then the lunch cart to come around.  I am not sure if I have made a face at Lenore, but she somehow knows I am not interested in food today.  Instead she pushes the cart to the next pod and then comes back to say hello. She asks what I have been knitting lately.  I haven't been doing much lately, but I am reading a book of short stories about knitting she asks to see.  She tells me about her latest project, before moving on to bring people lunch.  I haven't seen Lenore in weeks, but she always remembers who I am.

Once I am hooked up, I can see across the room that Carol is getting hooked up.  I wait until things settle down in her pod, reading to pass the time.  When everything seems calm across the way, I unplug my IV pump from the wall, and push the wheeled stand across the room to go visiting.  Carol is getting ready to take a vacation on Monday.  We run through a list of all the special things she will need, to be ready for what ever comes her way.  Even though she is going someplace warm, she needs to be prepared for the cool blast of air conditioning, (gloves, sweater, warmer slacks or capri's, socks) or the blazing sun ( extra sunscreen for super sensitive skin, hat, cover up for bare arms).  She has also been working throughout her treatment, so a vacation will be good.

Before too long, my meds are getting low, and I am feeling tired.  I go back to my pod to rest.  I am also waiting for a visit from my friend Marcia.

As I rest, I am thinking about what I might like to eat when I get home.  I have been wanting chowder, so I text my daughter Ayla to see if she would like to go to Iggy's in Oakland Beach this evening.  She is excited by this idea.  We make plans to go once all of the kids are picked up from my house.

I slowly become aware of the acrid cigar smell leaching out of my body.  It makes me feel gross.

Marcia comes in to visit as I am feeling badly about this.  She smells lovely!  Soapy and clean, like fresh flowers.  I enjoy her visit even more for the lovely scent she brings with her.  She has been away for a few weeks, and shares with me some tales of her travels.   She surprises me with a bit of chocolate wrapped in a lovely woven pouch.  Her thoughtfulness touches my heart.  She always makes me feel so special when she visits me. 

Before too long, our visit is over.  I am feeling tired, and my stomach is starting to feel badly.  I can't  wait to be done, go home, take my nausea med and sleep.

When I do get home, I sleep until four thirty.  I wake up when I hear Ayla talking to Steve downstairs.  All of my babies are gone for the day, even my sister has left.  As we prepare to leave, Alex pulls his car into the driveway.  He and Filipa have stopped by for a surprise visit!  They are just in time to go to Iggy's with us.

I grab a few peppermints before we get into the car.  I am very hungry and my stomach is getting queasy.  When we hit the highway, there is quite a bit of traffic. It is Friday, rush hour after all.  Before we are out of Providence, I am wondering if this is a good idea.  Warwick seems so far away now.  I try to keep my mind off of my stomach, but it is difficult.  I slowly eat some mints to calm the churn.

By the time we make Oakland Beach, I really need food.  We find a parking spot quickly, but when I get out of the car, the smell of fried food is overwhelming.  I need to cover my nose with my hand to keep the heavy aroma of fried seafood from making me sick.

 If you have ever been to Iggy's you know, there is always a line.  On this beautiful, warm, sunny, late spring evening, of course the line is long.  I tell Ayla I can't wait in the line to order, and Chauncey and I go into the seating area to hunt out a place for five to eat.  At first things are okay.  We find a small table quickly and take it hoping to upgrade to a bigger one by the time our food arrives.  After only a short wait, a larger table opens up, where we will all fit.  It is at the edge of a tented area, which seems perfect.  There is a breeze blowing up from the nearby beach, which keeps the normally delicious smell of cooking food from making me feel sick.

Chauncey can sense that I am feeling worse and worse, and tries to distract me with stories from our common hometown of East Providence.  As the breeze blows, there is a weight at the bottom of the tent flap that keeps banging against my chair.  Somehow, the vibration goes straight to my stomach.  I try moving my chair, but the weight keeps finding me, thumping, thumping thumping.   I must have looked badly, because at one point Chauncey looks at me and says "if you need me to stop talking I understand." I apologize and tell him I need to go sit out in the breeze.

I rest on one of the wooden railings bordering the parking lot. The cool salt air helps calm my stomach.  When I notice Alex, Filipa and Ayla have returned from the food line with chowder and clamcakes, and make my way back to the table.  Everyone is in a good mood and laughing, and I sit to join them.  As I start to eat my favorite red chowder, it becomes apparent I have waited too long.  I only take one spoon full before I need to go back outside.  As I sit in the breeze and try to calm my nausea, the contents of my stomach comes out.  Thick, fizzy, white fluid, the Altoids mints I had been eating to calm the quesiness.  I feel like a rabid dog.

Ayla comes out and tells me we can go home, but I tell her I don't mind just waiting in the car while they finish eating.  She gives me the keys, and I slowly make my way back to where we parked.  I settle in the back seat, cover my eyes with my arm and try to sleep.  This is the remedy I need, to sleep until everything is calm again.

Before too long, Ayla and Chauncey come back to the car.  They have packed up all the food, and are going to eat at home.  I think they must have sent the food home in Alex's car, because there is no food smell in the car.

As we travel back toward Providence, I keep my eyes closed and try to sleep.  For some reason, my brain tries to keep track of where I am in the world, and I imagine the things I must be passing by as we drive: the skate board park, the ice cream store, Dave's Market, the airport.  I open up my eyes occasionally to see where we are and my guess is way off.  Home seems so far away.

I don't remember getting home, or climbing into bed.   When I awaken, it is nearly nine.  I text Ayla and Alex letting them know I feel much better.  Laying in the growing darkness, I hear quiet voices in the kitchen.  I go down to find Alex and Filipa have stayed behind to make sure I am okay, and to make me food when I wake up.  Alex is eating a popsicle, which looks very appetizing.  He gets me one, and we talk a little while we enjoy them.  Before too long, Steve comes home.  He has been at a fundraiser for the blog he writes for.  I am sorry I have missed out attending this with him, but knew I probably wouldn't be able to make it through the event.   I wish that part of me had been present enough to realize a ride to Warwick on an empty stomach was also a bad idea. 






Thursday, June 18, 2015

Chemo part 2, Number 8: Port Clogged continued

Nancy and Rasika sit with me through my chemo routine.  Rasika has brought me some treats from Seven Stars Bakery which contain ginger, with the hope they will calm my nauseous stomach.  There are two ginger scones and a ginger star.  Normally I would describe these treats to you, and tell you how delicious these are, but my stomach is so unhappy with the very thought of food.   I tuck the bags away and don't even think to share my treasures until Rasika has left.  She had brought two scones, I should have offered her one.

Rasika leaves shortly before the lunch cart arrives.  Once again Lenore, the lunch lady pushes her cart past my pod, parking it out of my sight before coming back to visit.  She wants to hear about my knitting adventures, which I have none to share.  It is so lovely of her to ask though, and her understanding of my current food aversion is so appreciated.

I try to ignore the smells of food surrounding me, drifting in from other patients pods.  I decide   putting some food in my stomach might help settle it.  I give Nancy a scone and take a few bites out of my ginger star.  It is not quite the right thing, but I remember I have some some dark chocolate scorched almonds Rasika brought from Australia in my backpack.  Four of these and I feel a little more settled.

Nancy pulls out her backpack and shows me the entertainments she has brought. She has games, and a map so we can plan an upcoming trip around RI we want to take.  We attempt to visit the thirty nine cities and towns in the state, all in one day.  Since stopping to take photos in each town with landmarks is part of our goal, we need to plan our route carefully. The tricky part will be getting to Block Island and back.  It's not far, but ferrying over, getting off to get photos, and catching the next ferry back without getting distracted could be a challenge.  It will be fun to see how long it all takes, our own mini Amazing Race.

Before we decide which activity to do, Nancy needs to step away for a few minutes.  I take this opportunity to go next door and visit Carol.  She tells me about her vacation, and how she managed with her neuropathy.  It sounds like she had a nice, relaxing time. She has received some good news from Dr. Safran today too, so I help her celebrate by sharing my ginger scone with her.  Nancy hangs out with us while Carol and I finish catching up, but before too long, I need to return to my chair because my head feels weird.  Not anything new, just the usual drugs are being pumped into my body weird.

Nancy and I never end up doing anything she has brought, we just sit and talk.  I get spacy, and though I try not to show it I am sure it must be kind of funny.  She stays with me right to the end of my treatment, and gives me a ride home.  When we arrive at the front of my house, we are greeted by a riot of color on my sidewalk.  I have been chalk bombed again.

Wow.

Thanks Rasika, Sanji, Chaya, Brett, Willa, Jasper, Hazel,Thomas, Phoebe, and Alex T and the Mooslazi clan!

Way to make a person feel loved!






























Monday, June 15, 2015

Chemo part 2, Number 8: Port Clogged

I have an entry started from my last chemo, but it has been making me feel physically ill each time I try to finish it.  I'll have to publish it when it gets further away from a chemo date.

Chemo this week went as expected.  I cannot believe how just typing these words brings my stomach up to my throat, it is just incredible.  I am going to have a piece of peppermint gum to try and calm my stomach, and hope to get through this entry.

I guess that chemo sentence is not quite true.   My nurse and I spent the early part of my visit trying to figure out how to unblock my port.  Faye was off today, so I had Tracy, who is often on Fain 3 with me, but never my nurse.  Right from the start my port would not give a blood return, which is important when they need three vials of blood for blood work.  Tracy pushed saline through my line trying to clear it, but it would not work.  The saline went in, but no blood would come out.  I tried sitting back, reclining, reclining further, raising my arms, coughing, walking around the nurses station, laying down on a stretcher, raising both arms, coughing some more.  Through all of this she still could not get enough blood for my tests.  She finally resorted to getting the three vials of blood out of a vein in my hand.

Even though we knew that the saline was going through my line and into my vein, the obstruction at the end of my line still needed to be cleared.   The solution is to inject the line with something that  breaks down whatever is forming the little flap at the end of my line.  I don't remember what the official name of this stuff that got pumped into me is, just that we were calling it drain cleaner.  Ugh.  Not a pretty picture.

I was worried about what happens to the little bit of stuff, once it breaks down.  Does it dissolve or go into my blood stream?  Where does it go?  The nurse assured me it would not hurt me, that the solution sits in the line, clears up the problem and gets pulled back out.  Or something like that.  It needs to sit in the line for about an hour, which is about how long it takes to get my vitals done, wait for, and then visit with the doctor. 

When I see Dr. Safran, I get some good news.  My ct scan looks very good, with only two little dark spots present that he is not sure about.  He has asked me if I think I can handle two more chemo treatments, numbers eight and nine. I tell him this chemo is difficult, and that the best way I have found to get through it it by sleeping all weekend.  We agree this might not be the worst way to deal with it.   I tell him yes, I will do two more chemo treatments.

He tells me we can do a pet scan after the ninth, and then decide what to do from there.  I ask him what my options will be. It looks like I have three.  One, I can do nothing, and see what happens.  I will need to be monitored, since there is a very good incidence of recurrence with this type of cancer.  Two:  I can take a new drug that is supposed to suppress cancer cells from reoccurring.  Three:  I can take part in a trial with an experimental drug which will be very closely monitored.  Two in three people are on the new drug, the third is on nothing and monitored closely.  I think this is good news, but I am also scared.  There is a big decision to be made here.  The best course of action would have been to never get myself into this position, but it's too late for that.

Before I head to my pod, I find my friend Nancy in the reception area.  She has taken a vacation day to come and sit with me while I receive my treatment.   As I show her where we will spend the next few hours, we pass Carole, my chemo friend, she is heading off for her doctor's appointment.  She has chosen the pod beside mine, so we promise to talk later.

It has only been forty minutes since I have had the drain cleaner in my port.   It is still not quite long enough to work.  Nancy and I sit and talk to pass the time.  My friend Rasika also stops by to visit.  She is visiting Providence from Australia, and chosen to spend part of her day here in Fain 3 with me.  I am fortunate to have such friends.

Finally, after more reclining, arm raising, and coughing, the thing that gets my blood flowing again is laughter.  Of course.  Now that my port is all set, I am ready to go, ready to sit for four hours and get chemo slowly, but steadily poured into me. 



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.