Sunday, August 3, 2014

Figuring Out Chemo

July 2, 2014

I wake up this morning and feel amazing.  I am hungry and I have energy.   This is a sign that my body is getting better.  I have a little nausea, but as soon as I feel it, I take a compazile pill, an anti nausea medication, and I feel fine again.

Since I have this pump today, which is stored in a fanny pack that goes around my waist, Sara is going to do naps today.  I am not sure how to juggle a child in my arms so that I will not tangle them in my lines or knock off my two bags.

I am not happy about this fanny pack thing, I already have a bag on my waist, and I am nervous that the kids might get tangled in the line that runs from my arm to my pack. When we are reading stories, I can't easily have a child on my lap, because there are too many things in the way.  Even sitting buy my side, the kids wiggle into my pack and play with the line.

Kaileigh has gone off on a shopping trip to Savers for me.  She is looking for one of those backpack handbags that were in style a few years ago. We figured she should be able to find one there.  She is also looking for a few blouses that I will be able to put a pump through the sleeve of while I have to have the picc line arrangement on my arm.  While I am on the chemo and the nausea meds, my skin will be very sensitive to the sun.  I need a light, wide sleeved shirt I can get my pump through easily, to keep me both warm and covered from the sun. It also has to be long to cover my bag.

Kaileigh returns and has been successful.  She has found a small, purple back back that will hold the pump and take the lines over my shoulder keeping them out of the way of the kids.  I will look a little like Dora the Explorer with my purple back pack.  She has also found a few blouses that will work very well with hiding my bag, my lines and keeping me out of the sun.

The visiting nurse comes to show me how to flush my picc line, something which must be done every day.  The nurse doesn't have an extension allowing me to do it myself, so Kaileigh learns how to do it for me.  The two lines I have each need to be flushed out with saline and then heparin.  It is not a difficult process, there are prefilled syringes that twist onto the end of my picc lines and the solution is then pushed in.  It just takes a little time. The ends of the lines need to be cleaned with alcohol swabs, the saline solution needs to be pushed up so there is no air in the line, the syringe is attached, the saline is pushed in, and the same needs to be done with the heparin.  Then the cap is cleaned and replaced on the end of the line.  After you clean up all the plastic caps and empty syringes you have used you are done.  It all takes maybe ten minutes.

After the kids all leave, Ayla and I are taking Kaileigh to get her fox tattoo.  She has chosen to get the black and white fox on her shoulder. Everything seems to go pretty quickly, and Kaileigh is not bothered by it.  When she is done, it looks great.

Steve makes a salad and has heated up the lasagne that Brett brought over yesterday.  It is delicious.

After dinner I am fried and ready for bed.  I take my temperature, as has been my habit at bedtime since I came home from the hospital.  It is up to one hundred, so I take a Tylenol.  Two hours later, it has not gone down but up to one hundred and one point four.  This is the magic number the people at Fain 3 assigned me for calling in to check on things.  It is after ten, so I need to call the physician on call.  He calls me back right away.  After hearing about my history, he decides that it is nothing to be alarmed about, and tells me to take another Tylenol.  After an hour, my temp is down ever so slightly.

It is very hot and hard to sleep, but eventually I get there.  When I wake in the morning, my fever is gone.


I get up at five, and veg out in front of the news for a few minutes.  Hurricane Arthur is going to come up the coast and change everyone's Fourth of July plans.

Today I am going solo at daycare. Sara wants to go to Gloucester, Massachusetts to see their Ancients and Horribles parade tonight, and maybe even fire works.  This is the parade that we grew up with in my family.  We would spend much of our summer at my grandparents house on the Annisquam river in Gloucester.  Every third of July, when the town has their annual parade, we would have american chop suey for dinner and head out to the parade.  We would  park in the same parking lot and sit by the same wall in front of the grocery store every year.  The house is no longer in the family, but Sara still loves to drive out to see the parade.  She goes with our sister Jill, and her son Brian.

There are only three children coming today.  One of them arrives at seven, and is an older alum who is almost ten.  We play games and make ginger stars to celebrate the coming holiday.  We are putting the finishing touches on with m&m's, red hots, and frosting when the other two children arrive.  They eat a cookie and some candy as they watch us finish.  Shortly after we are done with the cookies, her mom comes to pick her up.  She is leaving for camp in a few days, so we keep a few cookies for the little kids and pack all the others up to be taken to camp and shared with new friends.

Once the baking is reasonably cleaned up, I take my two girls for a walk. We stop to visit to visit our friend Deborah, who lives down the street from my house. She shows us her garden, lets us play with her cat, decorate her driveway with chalk drawings, and shows us the poppies that are blooming in her front yard. It is always a treat when we get to visit with her.

We poke along and make it back to the house by lunch time.  We enjoy the last of Brett's lasagne, peas, watermelon and a ginger star.

One of the girls is very tired, so Kaileigh and Josh entertain in the kitchen, while I coax her to sleep with a song and some gentle strokes on her head.

Josh is going to read stories today, and is disappointed when a mom appears to take away his audience. He reads to Kaileigh instead.

I am feeling a little tired, so I leave my napper under the watchful eyes of Kaileigh and Josh, and go off to rest myself.  I get maybe forty five minutes when the phone rings.  It is the hospital checking to see how I feel.  I start telling them about the chemo, and realize that they are calling about the picc line.  Things can be so confusing! I try to go back to sleep and the phone rings again. Annoyed, I decide it is time to get up.  As I quietly creep downstairs I notice my sleeper is waking up too.

I give her a snack, juice and a cookie she didn't have after lunch. We go to draw and her mom comes to pick her up. This is perfect timing, as this is the time I need to leave to get disconnected from my chemo pump.

Normally, I will be getting disconnected at home, but the doctor wants me to get an iron infusion today as well.  My iron level has been low, and he wants to bring it up.  He didn't want to give it to me with the other medicines, because he wanted to give my body time to adjust to those first. 

We go to Fain 3 again, and today my nurse is Cassie.  She is tall and beautiful and wears a hawaiian print scrub top. She is a good listener, paying attention to and answering my questions and concerns.  She lets the  fluorouracil finish running through my pump, and gets ready to hook me up for my next infusion, saline and iron.

I haven't had any action in my bag since yesterday morning, so I am concerned about getting this iron.  One of the side effects is constipation, and my belly is already feeling hard. She checks and tells me to take some Miralax.  The iron could also have the opposite effect, so I need to be careful.  If nothing has happened by tomorrow, I will take the Miralax.

We discuss getting my port put in next week, although I get the feeling she would like me to wait until my next chemo session.  I am afraid that if I wait, the same thing could happen with my temperature, so I would rather do it sooner that later.  She makes an appointment for me for Tuesday.

Today I am there for just three hours, an improvement over Tuesday.  As I sit there I grow hungry and what I really want is a cheeseburger from Five Guys.  We drive to Lincoln to get one, and I eat the whole thing!

I need some things from the pharmacy, but suddenly, I am dead tired.  I have hit a wall.  I need to go home and get some sleep, so that is what I do.   

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