Wednesday, July 23, 2014

Friday, June 20th, A Plan is Made

Today is the day!  The next big day I have been waiting for.  It is the day that I find out, the day I start from.  

I get up and make some oatmeal, and get things ready for daycare.  It has been an interesting week for me.  My sister has come over early to do everything I cannot, all the heavy lifting.  I try to stay out of her way, I don’t want to be annoying.

I go upstairs and work on some computer stuff while Sara greets the early morning crew, Payce and Chase.  When more kids arrive, I go downstairs to be with the kids.   

I have two doctor appointments today, and Alex is scheduled to start a new job at Whole Foods Market. I have asked Allie to help out, she was one of my first daycare babies.

Two of our children have been away for a few weeks and this is their first day back. I am afraid that they will have a hard time settling in, so I stick around to help them say goodbye to their dad. We play with pretend pizza and draw.  All is well.

Today is a chicken walk day, and I decide to go along. We have a neighbor who lives around the block with four chickens, so we visit them each week to see how they are doing. If we are lucky the owner is home and we get to feed and peek into the chicken coop. Today she is not home, so we watch them from a neighbor’s driveway, clucking at them and saying hello.

On our way home, one of our kids finds a key fob that has been discarded in a garden. It is from a rental car, so Allie uses her smartphone to contact the company. It turns out that the car has been stolen, and we have provided them with a location of where the car may have been. I always tell the kids that one of their jobs is to be neighborhood superheros.  They come through once again.

While the kids play outside, I start their lunch before my first appointment.

Dr. Safran’s office is a ten minute walk from my house, at Miriam Hospital.  I don’t know how I will feel by the time I am done, and I still have another appointment later, so Kaileigh drives Steven and I there. We take advantage of the valet parking at the front door.  When we walk into the lobby, it is like walking into a fancy hotel.  

This building is known as the Fain Building, and the cancer center is located on the third floor. We take the elevator up, and take a seat until it is our turn at admitting.  It doesn’t take long, I am processed and take a seat in the admitting area to wait some more.  

This waiting area is bright and clean, and the soft, golden upholstered chairs break the area up into smaller more intimate waiting areas.  There is pretty art on the walls, stained glass in the wall of windows that overlook the city, some bookshelves filled with informational materials and a non intrusive television.  It is all pretty nice.

Kaileigh and I are both stained glass artists, so we are interested in some mission style lamps that dot the waiting area.  We notice there are tags on the lamps that say “Inspected by ____.  We chuckle at the notion of a lamp inspector in the hospital.  Kaileigh goes to turn one of the lamps on, and nothing happens.  We chuckle some more.  We are laughing over some other silly thing when they call my name, they have to call me twice.

We are shown to a room where they weigh and measure me, and take my allergy and medicine history.  There is nothing to report.

We are shown to a small room with an exam bed, two guest chairs, and a desk and chair for the doctor.  There is a computer with an annoying screen saver bouncing around, and the typical sink and cupboard  arrangement.  There is a view of the main hospital across the street, which is notable only because we have never seen it from this angle before.

We wait for a little while, but it doesn’t seem too long.  With three people in the room there is always something interesting to talk about.  I lay back on the bed and close my eyes.  I am tired from my morning.

Finally Dr. Safran comes in.  He doesn't seem much older than me, with grey hair and kind blue eyes.  I never stand up in the room, but I don’t think he is as tall as I am.  I think that outside of being a doctor, he may be shy and quiet, but here, he is direct and in charge.  He starts to tell me what he knows about me, which is quite a bit.  He has done his homework and gets things right.

He then proceeds to tell Steven, Kaileigh and I how he will treat my cancer.

H throws out a list of medicine names.  “Don’t worry,” he says, “I will write this all down for you before you leave.”  He explains and gives me a timeline.  Chemo, every two weeks for about six months.  We check on the success of the treatment, which will shrink the spots on my liver and the mass in my colon, and then operate to remove the spots.  We will address the colon after the liver.
I will need to get a pet scan, and they want to look at my upper respiratory system as well.

He asks what I do for work, and doesn’t see it as a problem.  With a little extra help, he thinks I can continue taking care of the kids.

He goes out to get some paper to write all of this information down for me, and we confer.  We all agree that we like Dr. Safran, and his plan makes sense.  We decide I should go with him.

While he is writing things down, I tell him about my mother who died at age fifty five.  She supposedly died from lung cancer, but I wonder if she may have had colon cancer as well.  She seemed to have many of the symptoms that I thought were menopausal, which also turn out to be symptoms of colon cancer.  He suggests genetic testing to see if it runs in my family, but that will be done at a later time.

While the doctor is describing the treatment to me, he tells me it is called Folfox.  For a moment all I can think of is the coincidence of the fox.  Kaileigh had been painting them, and now this.  Surely if I have a spirit animal in this, it must be a fox.

He asks if we have questions about anything. I ask about the spots on my liver. He says there are more than ten, but he doesn’t really know how many. I ask him if it is the worst he’s seen, and he says by no means. Okay, I think, I can live with that.

I tell him about my frustration with the other doctor I had spoken to, and he says he is glad that I have come to him.  I feel that way too.

Since we have made the decision to work with Dr. Safran and his staff, he would like us to meet with his head nurse.  She is at a luncheon getting an award and is running late.  He asks if we would mind waiting a short time. Our next appointment is still a few hours away, so we stay.

We get set up for blood work, and then meet Nurse Danzer.  She explains how things work on Fain 3. The same nurses will care for me each time I visit, they will stack my appointments all on one day so I don’t have to make multiple visits to the hospital, there will be people to help me along every step of the way.

She sets up a meeting for a teaching session with the nurses on Tuesday of next week, and then a start date for my chemo of Tuesday, July 1st, just one and a half weeks away.  I will get a port put in to receive my medicine through on that first day, and when that is in get my first round of chemo.  This all feels right.

I have blood taken and they show us the treatment rooms where chemo is given.  I meet some of the nurses.  Everything seems very well run and nice.

I can’t wait to call on Monday morning to cancel my appointment with RW cancer center.  I feel confident about Dr. Safran.

We go back to the house, and I don’t really have time for a nap before my next appointment.  I play some games with the kids and soon it is time to go.  It is only ten miles to Johnston, where Dr. Lentrichia’s office is, but I am nervous about being late.  Steve and I get into the car and Kaileigh drives us again.  We make it with time to spare, and then have to wait.  We watch part of the Dr. Oz show, and then Ellen.  Even though I have a sweater on, there is a draft from the air conditioner and I am cold.  I forgot my shawl, so Steve puts his arm around me to keep me warm.

As we watch Ellen, a video comes up that makes the three of us laugh.  It is so funny.  There is a man trying to film a horse being shown at a horse show.  He is up against a gate, when another horse comes up behind him and starts nuzzling his ear.  It looks like it must tickle like crazy, but still the camera man keeps his shot steady and bears with it.  The horse persists until the man can’t take it anymore, and he has to stop filming.

Steven, Kaileigh and I are the only people in a waiting room full of people laughing.  Many people look at us, so sad and serious. I feel badly for them and wonder about why they are here.

Finally, we get shown into the room we were in two weeks ago. We show Kaileigh the model of the colon and wait some more.

Finally Dr. Lentrichia comes in. He seems like he has had a long, busy day. I tell him of my visit with Dr. Safran earlier and show him the plan. He is very pleased and makes a copy for his files.  

We talk about how I am feeling, the bag, my treatment. He checks out my stomach, the incisions, the bag, the stoma, and is pleased with what he sees.  He offers some helpful direction, and wonders if I would like to meet with an ostomy group. Since mine is only supposed to be temporary, I think I will be okay. I have learned of many friends who have family members with colostomies, plenty of people who would like to share their experiences.

I ask him what my unattached colon is doing, I imagine it is hanging out there just waiting to be reattached. He says that is pretty much it, and that the fact that I still feel the urge to poop is normal. There is still stuff building up in there, and it needs to be moved out of my body.

He gives me the all clear to do what I like, pick up babies, yoga, even water ski if that is my thing (it is not, by the way.)  I am delighted. I feel a sense of lightness, of being set free.

I am exhausted.

Even though we get back around five, and dinner is cooking, I just want to take a nap.  At the same time, I am starving, but too hungry to eat.  I have some potatoes and chicken my sister in law had dropped off.  What I really want is ice cream.

I dispense all of the information I have learned today three times. Once to each sister and once to everyone at the dinner table.  Everyone is happy I now have a plan.

By now I can barely stay awake.  

I go upstairs and take a nap for two hours.  When I wake, I am sure that I need to get a tattoo of a fox on my arm.  I mention this to my girls and they want to get one for solidarity.

I think that I am going to be awake for a while after such a late nap, but by ten, I am ready for bed again.  I sleep the whole night through.

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