Monday, June 16th: An Attempt to Return to Normal

Today is my first week day home from the hospital and I want to be downstairs when parents arrive. While Sara takes care of the Monday morning clean up, and I hang out upstairs until I hear the first parent arrive. I go downstairs and say hello and hang out until most of the kids are here. Before everyone arrives, I am so tired. It doesn’t take long.  

Although I have been in the hospital for a week, and I am still recovering from surgery, there is this desire to return to normal. To do things that seem normal. Because right now in my life, there is so little that seems normal.

I am usually a person with quite a bit of energy, able to motor through even on days when I really don’t feel like doing things. I am surprised at how little I have right now. Sitting on my bed staring at the wall would normally not be appealing to me, but lately, I find myself very comfortable losing myself in the cool, blue smoothness before me.

At lunchtime I wander downstairs for food. One of the older kids that is visiting for the day wants to learn to knit. Some of the younger kids know how, and she would like to learn too. Between bites of my sandwich, I teach her. I hang out until she gets the hang of it, and then I go upstairs. How can doing so little make you so exhausted? I am ready for a nap.

When I wake up, it is late in the afternoon, almost pick up time for the kids. I go outside to enjoy the sunshine and say hello. A mom stops by to check in on me. Her child isn’t even here today.

Kaileigh warms up some lasagne that Brett brought by over the weekend. There is another meatless one that Joanne dropped off. This takes care of everyone in my family. It is nice to have delicious, healthy food right in our fridge, ready to go. There is so much love packed into it, I can feel myself getting stronger.

Steve and I snuggle on the couch and watch 24 with bowls of ice cream. Things seem almost normal.

I go to bed, but lay there and cannot sleep. I have a little fever, but this is not unusual. I am worried about my stoma. Maybe it is not the right color. I can’t see it through the bag I have on, so how will I know? Is there stool on my skin? Do I have an infection? What will I do? I have phone numbers for people to call in an emergency, but is this an emergency? No, this is a panic attack. I realize this and take out all of the material that I have on stomas. I read as much as I can and try to calm down. Eventually, I get tired, and bored. I clean up all my papers and go to sleep.

Tuesday, June 17

Kaileigh will leave to join Josh and his family on their annual camping trip today. She has been such a great help to me throughout this ordeal, I am glad that she will be getting away, even if only for a short time. She will be back on Thursday, so she can go to the oncologist and the surgeon with me on Friday. She doesn’t want to miss anything.

I feel badly about this interruption in Kaileigh’s life. Prior to June 4th, the day I told her the results of my colonoscopy, she was hard at work, writing her masters thesis on plant genetics. She was looking forward finding an apartment in Boston, and finding a job in the field she has trained for. Now, everything is on hold. She is back home, sleeping on an air mattress in the hallway, in the limbo that is now my life.  

I worry that she will not finish, because I have interrupted the flow of her life. I know this is not  her personality, but I can’t stop the worry. This is not what I want for my children, to have to be so concerned about their mother that they can not get on with their own lives. This is not the mother that I want to be.

Kaileigh comes to give me a hug. “‘bye Mama,”  she says. “I love you.  I’ll be back soon.”

Wednesday, June 18th

I get up early and Steve and I go for a walk to the park and back. Even though I have been walking a little everyday, it is still tiring. This whole thing is tiring. The waiting, the wondering, waiting some more. Not only is it tiring, it is boring. And it is not like I don’t have things I want to do, it is that I don’t have the energy to do them. When I first came home from the hospital, I thought, great, I am going to have all this extra time this week. I will write, I will paint, I will move some of the stuff that clutters my life out of it. If only I had the energy.  

In truth, if I had the energy, I would be working, helping out with the kids. When I am upstairs listening to the sounds in my house, the sounds of the children make me smile. I miss being with them. It is Wednesday, and by now I can sit with the kids for a little while, but I am not much help. I try to be upbeat and playful, but know that I am spending a fair amount of time with my head in my hands just watching. Then, I get tired and need a nap. I am so lucky Alex has been able to fill in for me and help Sara. It is nice to be able to completely trust that he will help out and things will not fall apart. Children won’t escape or eat crayons or treat each other unkindly. He will play games with them and guide them in the gentlest manner. All of my children have grown up with my daycare, and all have learned to be great helpers, but Alex is the one who has had to come through for me in the most difficult of times. It is nice to know that I can count on him.

Steve has busy working on a story about the hotel workers downtown this evening. They were to meet with the mayoral candidates this afternoon, and things are running late. Alex and I are on our own for dinner, but one of the Mom’s stopped by with some wonderful chicken soup. I consider this and realize even though I have hit this bump in the road, I have a really nice life.

A Busy Weekend

Saturday, June 14th

I wake up and go downstairs.  I putter around the kitchen, cleaning up after our Boston Market feast.  I make a big pot of oatmeal to share with Steven and the kids.  It is not long before I am tired and want to just sit.

I have been thinking of going to Whole Foods Market, but am now thinking sitting in the car would be nice while someone else goes to the market.

I sit at my computer and look through all the emails that have accumulated during the week.  

It seems like it will be a never ending task to catch up with all the things that have come in. I start looking for things to delete.  

The visiting nurse calls.  She will be by around 1pm and help me change my ostomy bag.  I am dying to take a shower, so I can’t wait for her to arrive.  The nurse at the hospital sent me home with a bag full of goodies we will need to go through.  I lay out things I know we will need;  stoma sizer(1), scissors(2), deodorant (3), no sting barrier film (4), adhesive remover wipes (5), mirror (6) and bag (7). Since I have just come out of the shower, I don't need water and wipes, and I always need to keep the roll of paper towels handy.

The nurse who arrives is named Christina.  Kim will be my regular nurse she tells me, she is just filling in for the day.

We take off the old bag, which was just put on yesterday, and I get to take a shower.  I need to be aware that my stoma, the part of my intestine that is sticking through my  belly, can send out waste at any time.  This is not an action I have any control over any more.  Once out of the shower, I need to keep it covered with a paper towel, just in case.  

We look at my stoma in the full length mirror in my bedroom.  It is dark pink and weird looking.  

We set to work prepping my ostomy bag.  We measure the stoma to see how big it is.  I have a sizing chart I use to do this.  It has circles of different circumferences on it, that I can slip over my stoma. It measures 1.25”.  I need to cut a circle out in the opening of my bag to fit the stoma through. It has to fit just right, not too loose or tightly. If it is too tight, it will hurt the stoma. If it is too loose, stool will get on the skin on my belly and cause an infection.

Once the bag is cut to size, I need to prep the skin on my belly.  The idea is to create a seal that will hold the bag in place for a couple of days, before I need to change it again. The skin prep comes on a little pad, in one of those little packets like you get in a restaurant after you have something sticky.  I have to rub it all around my belly where the bag will go, but try not to get it on the stoma.  It is not hard, but the position is odd.  I prop up some pillows so that I can keep my belly flat, and still see what I am doing.

Once the prep is on, then the bag needs to be placed.  This is tricky because now you have sticky skin, and a sticky bag, and you need to get the placement just right.  The hole needs to go over the stoma without crushing it.  Once that the bag is on, it needs to be pressed so that the heat from your fingers will help the adhesives work.  

All of this seems somewhat simple, except there is so much that can go wrong.  You don’t want your skin to come in prolonged contact with the stool, so you want the seal to be complete. You can’t really see if the seal is complete, because there is a bag in the way.

You want to watch your stoma to see that it is a nice pink color.  Except poop comes out of it, and gets on your bag.  How can you tell if it is discolored?  There are no nerve endings in your stoma, so you can’t really tell if something it is having trouble until you see it.  How do you know when something is wrong?

I ask the nurse all these questions, and she gives me answers.  I have booklets that explain how all this works, but it is so much to take in.  One more thing she wants to go over is bathroom maintenance. She tells me that whenever I empty my ostomy bag, which may be two or three times a day, I must clean anything I have come in contact with.  Clean the toilet bowl, the surrounding area and the sink.  Everything should be wiped down with clorox wipes before I am done.  Great, I’ll have that sparkling clean bathroom I always wanted.

Before she leaves she asks me my plans for the day.  I tell her about Whole Foods, and she quickly nixes that idea.  “Listen,” she says, “you have just had major invasive surgery on your body.  You need to rest.  You shouldn’t be walking around Whole Foods.  Think of something less strenuous, like just a car ride.”  I suggest Del’s.  “That’s more like it,” she says.

by Alex

After Del’s, Kaileigh, Alex and I go for a walk to the top of my street.  We decide that is far enough and walk back home.  I never would have made it through Whole Foods.

I decided to do some watercolor painting at the dining room table.  I really want to get that picture done for Natasha I had started in the hospital.   Kaileigh started painting a fox, a colorful little guy leaping across the page.  Alex has decided to join us as well, making some flowers and trying out the medium.

While we are painting, my brother in law Brian stops by on his way to work to drop off a chicken dish he has made us for dinner.  He and Renee, his wife, are amazing cooks, and we are excited to have delicious food.

by Kaileigh

Tangie, Adam, Dave and Dan stop by for a visit.  We sit and draw, paint and talk for a while before they leave.  Kaileigh adds more foxes to her painting, and it reminds me of something my grandparents used to have hanging in their home.  I really love what she is doing.  

While we are seated around the table, I can see my sister Sara outside.  She is pulling up the grass between the sidewalk and the street.  She is preparing the beds for the zinnia garden that I didn’t get to plant last week.  I have an amazing sister.

Ayla and Chauncey stop by, and we have the chicken that Brian has brought over.  It is awesomely delicious.  It is moist and crispy and has a delicious sauce that goes over the whole thing.  There is also enough to feed a small army.

by Alex

It gets late, and I need to go to bed.  Kaileigh has realized that most of my clothes will not work with my new bag, and decides to go to Target to remedy this situation. She and Alex go off to shopping, while I go off to bed.

Sunday, June 15th, Father’s Day

I lay in bed and think about my possibilities for the day.  It is Sunday, so there is church. There is also gardening, something I am woefully behind on.  I don’t act on either of these things, instead I just lay there and think about them.

I finally go down to the kitchen.  It gets a lot of use, between our regular lives and my daycare.  Everyone has their own style of cleaning, and their own focus.  I haven’t been in my kitchen for a week, and I want to get into the nooks and crannies.  It seems silly, but after a week in the hospital, sitting around doing nothing, I just want to do something normal.  Cleaning the kitchen is the most normal thing I can think of.  I last much longer than yesterday, going slow and listening to NPR to help me along.

by Tangie

By the time I am done, it is lunchtime, so we heat up the leftover chicken from dinner last night and enjoy it once again.  Josh returned from from Ithaca last night and his brother has stopped by to visit, so they join us for lunch.

I go upstairs to get dressed, and find the clothes that Kaileigh found for me at Target.  She got some yoga pants with a nice soft waist and a flowy peach colored dress with a high waist.  Everything fits nicely and hides my ostomy bag.

More visitors stop by. Steven’s mother and Ed arrive, bringing a huge fruit basket with them. Helen tells me she just needs to see me to make sure I am doing okay.  While we are sitting and talking, my friend Julie stops in too.  She is in from Colarado, and has just picked up the car her family needs for their camping trip in Massachusetts this week.  Since she was over near the mall, she decided to pick up some clothes for me.  There are three dresses, all with high waists and wild designs on them.  I am so appreciative of them, but a little skeptical.  The designs seem so wild for me, I am not sure if I can wear them.

Julie, Josh and David pack their mini van with all their camping gear and are off for a week of camping.  We give hugs all around before they go.  Kaileigh drive up on Tuesday to join them.

by Dave

Kaileigh and Alex take me out for another walk.  This time we manage to go all the way around the block.  Walking up the hill I live on is more difficult than I expect. About halfway up, there is a house that has been sold in the week I was in the hospital. The new neighbor is out in her garden trying to identify the weeds from the plants.  I introduce myself and my kids, and start to point out the weeds.  She hasn’t moved in yet, but I tell her I will return when she does to help with her garden.  I am to take a break to talk with her, it is much easier to make it up the hill.

I am getting tired, and take a nap.  It is Father’s day, and we want to take Steve out to Texas Roadhouse for ribs. It is his favorite dinner. I want to be awake enough to enjoy our outing.  Kaileigh, Ayla and Alex come, along with my sister Sara.  We can’t convince my Dad to join us. I order a small steak, with a salad and mashed potatoes. I manage to eat the whole thing.

The next part of the plan is to take Steve to see the new Tom Cruise movie.  I am feeling tired, and need to go home, so they drop me off before they go. When I get into the house, it seems that everyone in my neighborhood, in every direction, is grilling for Father’s Day.  I know that I have just come from a steak house, but the smell is so overpowering and inescapable, it makes me feel nauseous.  I grab the spray that Amy sent me in the hospital and drift off to sleep to the scent of roses.

Friday, June 13th

I wake up this morning totally annoyed with that nurse.  She could have brought me that pain medication sooner, I think.  Maybe I was feeling upset because Steve wasn't there, maybe I was being over sensitive, but I was still annoyed. Fortunately it was morning and I was feeling better.

Dr Lentrichia comes in while I am eating my breakfast. I have ordered cream of wheat and yogurt, because this is close to what I might normally eat at home.  He looks at my food and thinks that I am still on a semi liquid diet.  Between the temp and the food, he says that I will still be here another day.  I am very disappointed and ask why.  He says I need to move up to solids before I can go.  I tell him about my turkey lunch, and the beef stew I had for dinner last night. “Oh,” he says, “then you can go home today!”  I am elated.  He says that all of the tests for infection have come back clear and chalks the fever up to my liver.  I will have an appointment with him before I leave the hospital, and he will be on call all weekend if I need him.

Jubilation!

Nancy stops by for a visit again, and I take her on the art tour.  We laugh at the goofy golf picture and wonder at the oddness of the others.

Kaileigh comes in later with my Sara’s car so she can drive me home.  I start to get things together so when the time comes, we can leave more easily.  Over the past few days I have accumulated flowers, art supplies, childrens art, hospital art and gifts.  I need to fit them together so we can get them home safely.

Diane the nurse in charge of ostomy education comes in to tell me about her art show.  It turns out it is sponsored by the medical company Lilly.  She has picked up information about the show at a seminar she was at yesterday, and would love for me or someone I know to participate.  I tell her I will look into it.

My day nurse, Jasmine, shows me how to change my colostomy bag.  She lays things out, and tells me to get them ready before hand. Then she shows me how to change my bag.  There will be visiting nurses who will come to my house to help me with this learning process, this is just the first step along the way.

Lunch arrives, and it is pretty crazy.  I cannot have raw fruit right now, only cooked or processed.  It needs to be soft, with no skins, you get the idea.  There is a fruit plate on the low residue lunch menu, served with cottage cheese.  I think this sounds good so I order it.  I know it it going to be canned fruit, but oh man!  It is a family sized mountain of canned fruit that is impossible to eat.  Who can eat this much all by themselves I wonder?  I do what I can, but there is still a lot of left.

It is getting close to release time.  I sign some papers and still need to get dressed. Suddenly I realize that I don’t have clothes that work around this new bag of mine.  I am a person who works in a tee shirt, jeans and a hoodie every day.  They are good sturdy work clothes that stand up to the rigors of play, and pretty much the extent of my wardrobe. This totally not what you can wear with an ostomy bag, unless your jeans are so low cut that your butt hangs out.  these are not the kind I own.

Fortunately I arrived at the hospital with the one loose dress I owned.  I added the blue tee shirt that Amy had sent me, and the coordinating socks.  It is a stunning look. My feet are a little swollen, and I don’t want to stretch out my new sandals, so I wear my slippers.  I will need to get new ones when I leave, since I have been walking around the hospital in them.  I don’t want to wear them around the house and expose the kids to anything I may have picked up here.  They are pretty worn out by now anyway.

I try to balance stalling with leaving as soon as possible.  I don’t want to get home before all the kids leave, it would just be too chaotic.  It is only 4pm though, and I really can’t wait any longer.  Ayla arrives with some cookies from Pastiche, a token of thanks for the nurses for all their good care.  This causes a slight departure delay, the nurses don’t want to miss out on getting their favorite cookie.

I climb into the wheelchair and we fit flowers and gifts around me.  Once the door is opened, I am hit with the heat and humidity of the day.  For the past few days I have been in a cool, climate controlled building.  Outside, wrapped in a blanket and my shawl, I am clearly overdressed, and warm for the first time in days.

As we drive home, I realize that it is dinner time and I am starving.  After the disappointing turkey dinner yesterday, what I really want is Boston Market.  Everyone agrees that this is a good idea.  We stop off to get a rotisserie chicken, corn bread, mashed potatoes, stuffing, green beans and gravy. Steve, Sara and all my kids are there to share it with me. It is delicious.

Shortly after dinner, I need to go to bed.  It turns out that being operated on and being in the hospital all week makes you tired.

I lay in my bed, and listen to the sounds of my neighborhood.  Children laughing, people walking by talking, the footfalls of my neighbor running by.  I am happy to be home.

Thursday, June 12th

I awaken again early, and eat the same breakfast as yesterday. I get washed up when Steve wakes up, and then we go for a walk. I ask him if he heard the fire alarm last night, but he didn’t. It was just like the one that went off when we were in admitting, so I figure it must happen frequently.

I am moving to solid foods today, so the kitchen calls to see what I might like for lunch. This could be interesting.

Polly stops in early with another smoothie and some banana bread from Wildflower. Today I know that I can enjoy this smoothie legit with approval from the dietician, and enjoy it with no guilt.

While Polly is still there, my friend Alex also stops by. I haven’t seen Alex in a couple of weeks and I can see the concern on his face. He is relieved to see that I am strong and doing doing well. He brings good wishes from Valerie, Luke and Emmett, and the promise that we will all get together soon.

Kaileigh and Josh come in. Josh is going back to Ithaca to get ready for a camping trip. He will go, pick up gear and be back tomorrow. Josh has been so helpful and wonderful through this whole episode, from letting Kaileigh take his car to visit and then riding twelve hours on a bus to get here, to dropping what he is doing to help in any way he can. Having him around has been great.

Kaileigh and I take a walk, arm in arm. I don’t really need the support, I just think it is a nice way to walk. I have asked the nurse if I could go explore the art on another floor, but I am told no. We stick to our regular route.

The doctors are still trying to figure out why I have been running a temperature at night. After doing all the tests they can, they decide to take all of my lines out. No more IV, no more epidural. The anesthesiologist told me the most painful part of this whole procedure may be when they untape my back and take out the epidural. The tape is about twelve inches across and runs from my waist to my shoulders. As she peels the tape off, I feel such relief! My back has been sweaty and itchy and the stickiness of the tape coming off is like a giant back scratcher. It only hurts when she stops to move my hair out of the way. Now suddenly, I am a free woman. No more IV to push around, no more lines to get tangled in.

A physician's assistant comes in again today, a nice young woman whose name I cannot remember. We chat, she says I am doing well. She says they are still trying to determine the cause of my fever. Dr. Lentricia will be by to visit tomorrow. As she leaves, she asks if I need anything, and I say yes. I tell her I need a tiara. She stops for a moment and smiles. No one has ever made that request before.

Dr. Lathore stops in to say hello. She is one of the doctors from the Cancer Center at Roger Williams Hospital. She tells me she is waiting for the biopsy reports on my liver and will look forward to seeing me at the cancer center. They will make an appointment when I leave, or when they get the biopsy results. I tell her I am going to also see a doctor from Miriam Hospital which is a five minute walk to my house. I explain to her that we don’t have a car. She tells me they have transportation available, and they would help get us across town. It is not sounding that good to me.

Dr. Safran's office had already called, and I have an appointment for next Friday.

Lunch arrives, turkey with gravy, stuffing, potatoes and squash. If there had been more cranberry sauce, I could have finished the turkey. The vegetables are very disappointing. You would think that there is very little that could be done to make mashed potatoes and butternut squash unpalatable, but somehow the cooks at RWH have the secret. I eat my jello and drink my milk.

Steve has been with with me in the hospital, only leaving for brief periods to take a shower or cover a quick story at the State House. Tonight is a big night at the State House, they are getting ready to pass the budget. One of the stories he has been working on, raising the minimum wage for hotel workers in the city, has made it to the state level. They are asking that the state support them in their request.

[Steve here: I wrote a lot about the hotel workers and their fight for a fair wage, but the two stories I wrote on this day are RI House to hotel workers and PVD City Council: screw you and PVD City Council puts $15 hotel worker wage on Nov. ballot.]

RI House to hotel workers and PVD City Council: screw you - See more at: http://www.rifuture.org/author/steve-ahlquist/page/2#sthash.KCyjW182.dpuf

RI House to hotel workers and PVD City Council: screw you - See more at: http://www.rifuture.org/author/steve-ahlquist/page/2#sthash.KCyjW182.dpuf

I have started working on a drawing today that I will paint later. The weather is grey and there is little else to do. Tomorrow it is Natasha's birthday, and I think I might give it to her as a gift. It is a picture of festive little flags, and I put a three on one of the flags for her third birthday. Natasha is one of the children who comes to my daycare. On birthdays we make cupcakes and birthday cards and have a little celebration. I am sad that I will miss it.

It has been a quiet day, but it has passed quickly.

Ayla and I do an art tour and stop in vacant rooms to look at the view out the windows, and check out the room decor. We discover that the art in some of the rooms is far less spectacular than the art in the hallways. Hard to believe.

Before Ayla leaves for the night, a young nurse comes in to introduce herself. Her name is Cherry and I instantly like her. Unfortunately, it turns out to be a bad night. Around 8pm Cherry takes my temperature, and it is high again. She gives me a Tylenol to bring it down. I go to sleep and awaken around 11pm. Steve has not returned yet, and I am feeling sweaty, achy and irritable. I call for the nurse and she speaks to me from the intercom. I tell her my complaints and she tells me it is just from the fever breaking. She eventually comes into the room to take my temperature, and it has gone down. I ask her if I can get something for pain. She says she will check on that and she disappears.

I fall back asleep for a little while when Jean comes in to check on me. She is the third shift CNA who has been taking care of me all week. She helps me change out of my sweaty, cold johnny and gets me some pain medication. Jean is there when Steve comes in at 1:30am. He has taken a bus and walked through the rain to get back to me. “He is a keeper,” she says.

Wednesday, June 11th

This day starts much the same as yesterday, except this morning they bring me breakfast. My bed tray is covered with pencils, pads and flowers, and I rush to clear it for the food guy.

There is cream of wheat, jello, milk and coffee.  I am a little nervous about trying the cream of wheat since I originally thought that I might have a gluten allergy when this whole episode started, but I am SO HUNGRY!  I cautiously dig in. I figure what better place to be than a hospital if there is going to be a problem. I dig in, and the food feels so good in my belly.  Warm, filling and delicious.  Everything goes down and stays down just fine.

My anesthesiologist comes in again for a quick visit, checks out my back and how I am feeling.  All is going well.

I take another walk, this time all to the end of the corridor where I peek around the corner. There is a stoplight posted on the corner of this intersection, but it doesn’t seem to be a high traffic area.  I’ll be back to check this area out later.

My neighbor Polly comes in early with a smoothy and a muffin from the vegan bakery in my neighborhood, Wildflower.  I am not sure whether or not I can have the smoothie, but I start slowly sipping it anyway.  It tastes delicious.  Steve, who has only left for short intervals is grateful for the muffin. It is so nice to see Polly, and so lovely of her to take the time to stop by.  She checks in, makes sure I am doing okay, and we chat about things at home. She is on her way to work, so it is a short visit, but so appreciated.

A dietician comes in to visit me while I am sipping on my smoothie.  She is here to tell me about the new diet I need to adopt in order for my body to get used to it’s new digestive detour. The diet is called low residue, and this means only easily digestible, low fiber foods for a while. I can slowly introduce other foods as my body adapts and tolerates things. There are recommendations for producing less gas, and less fragrant  bowel movements.  It doesn’t seem like it will be too difficult to follow, except that there is no fresh fruit at first. Only canned or cooked. Smoothies are okay, but my usual bowl of strawberries and blueberries with yogurt is out for a while.

Nancy and Kathleen text me to see if I would like visitors.  They will stop by before lunch.  

My Dad stops in, and shortly after my Mother in Law, Helen and her husband, Ed come by too. We all have a pleasant visit, catching up on the events of the last few weeks.  Sometimes things happen so fast, it is hard to keep everyone in the loop.

My Dad mentions he wants me to see Dr Safran too.  He has been treated by him and really likes him.

Kathleen and Nancy arrive, and Kathleen, who is a doctor, checks in on how I am doing.  She asks me if I would like her to call Dr. Safran for me, and make an appointment.  She calls right then from my room.  They will call later with a date and time.

Nancy brings me a bag with a prayer shawl in it from the Prayer Shawl Ministry at her mother’s church, St. Brendan’s in Riverside.  It is a beautiful blue.  We debate about whether or not her mother could have made it, and then spy some less than perfect weaving in of yarn.  We agree that this is probably not her work.  Still, it is beautiful and warm and I love it. Now the queen has a mantle.

After they leave, lunch comes. I am bumped up to creamy solids.  I have some foul smelling, unidentifiable cream soup for lunch. There is also one of those italian ices. I eat the jello and leave the rest.  Ayla and Chauncey go to Newport Creamery to get me a coffee cabnet.  I feel like I have turned into such a food snob here. I am so hungry you would think anything would taste good. I just astounded that they serve people such unhealthy and gross tasting food in the hospital.

Kaileigh has brought me more sketchbooks, so there are more things for guests to do.  I found that making the circles was so time consuming, I started asking friends to make them as well.  It turns into a collaborative project.

My friend Tangie stops in on her way to work. She colors a circle while she visits.  She gives me a pair of earrings from her trip to Texas. They are the most beautiful blue iridized glass squares.  They match my mantle perfectly.  I am going to look regal walking through the halls of Roger Williams Hospital.  The only thing missing is a tiara.

A woman named Diane comes in who is in charge of teaching me about changing my ostomy bags.  She is very nice, and interested in the art we have going on in the room.  She has started an art show at the hospital and would like us to consider putting some of our art in it.   She promises to bring me more information on it later in the week.  She also reviews all the things I have been learning about my colostomy and the changing of the bags.  I will have a visiting nurse who will come to my house for a while to help me learn how to change them.  I will have to choose a company to order the bags from, and the VN will also help me with that.  She goes over the bags she has with me, and tells me how they work.  I need to sign papers so that companies can send me samples.  Suddenly going to the bathroom seems like a lot more work.

Dr. Lentrichia’s physician’s assistant comes in to visit, and I immediately knock the vase off my table which shatters all over the floor.  After finally speaking to the oncologist yesterday (I don’t know how I forgot to mention this,) we are not quite sure what Dr. Lentrichia did on Monday.  He clarifies things for us.  Somehow the fellow that visited didn’t quite have the story straight.  This doesn’t fill me with confidence about the Cancer Center at RWH.

After the doctor leaves, my dinner comes. More foul smelling soup. Steve and Ayla decide to go get me some good soup from Panera Bread.  While they are out, I put on my mantel and Kaileigh and I go for a walk.  We go all the way to the end of the main corridor and take a right.  Are we supposed to do this?  We do not know, but we do it anyway.

There is art decorating the walls of these corridors.  Most of it seems faded and old.  Some of it looks vaguely familiar, but at the same time, not quite.  My favorite, just because it is so ridiculous, is a brightly colored watercolor of a golf course.  It almost looks like any pastoral scene, but there are these two golfers in the middle of it, in bright golfing attire.  It is such a weird picture.  I try to imagine how it ended up in these corridors.  Is it the favorite of some doctor?  Is there a patient who painted it and donated it?  Maybe someone brought it home all excited to hang above the sofa and it was nixed by a partner with more refined taste.  It makes me laugh everytime I see it.

We arrive back at the room just in time to meet Dave and Dan.  I sit down in the chair by the door, because little shards of glass from the vase are still on the floor.  I am just about to start putting some red jello into my mouth, when a nurse comes from around the corner.  I am scheduled for a ct scan at 9:00pm.  No food or drink until after that.  As if on cue, Steve and Ayla walk in behind the nurse with my baked potato soup.  There goes dinner until after the ct scan.

My friends and family spend another nice evening together talking and drawing. It is so relaxing, it is like I am on vacation, which in a way, I am.  Back at home there is still a daycare that is being run, thanks to my sister, Sara and my son, Alex.  They work all day, taking care of the children and the families that come to my house, and then stop in to visit me at night.  Without them, my business would have to close, and my sister and I would be out of work.  I feel so lucky to have family that are willing to do what needs to be done in this crazy, trying time.

As if on cue, everyone leaves just before I need to leave for the ct scan.  There is just enough time to go to the bathroom before climbing aboard the stretcher that will take me down to the basement for my scan.

The ct technician is nice, the scan takes very little time, and I have to wait for transport to come wheel me back upstairs.  The tech and I chat about the ct scan machine, she tells me how the engineer who services it showed her how it works when she was studying to get certified to run it.  I think this is very cool.

When I get to my room, my nurse has already warmed up my potato soup and brings it in to me.  It is delicious.  After a busy day, I am running a fever of 101.  There are a round of tests ordered to try and figure out why.  After the phlebotomist comes for my blood, I go to sleep and the nurses don’t bother me much again until 5am.  I have a vague memory of hearing the fire alarm go off in the middle of the night.  Fire in stairwell two, fire in stairwell two...

The Less Than 1%

It is 4am when they awaken me to take my vitals. At this point, I really feel like I need to pee. Again, I sit and try to relax. I run water, try standing, nothing. My nurse suggests that she can get a scanner and check my bladder to see if it is full. If so, they can re-catheterize me. It isn’t long after this suggestion that my body finally says, “I got this, I can do this.” Relief at last. I wonder if her suggestion always works so well.

After my big 4am excitement, I contemplate staying awake. Steven has already fallen back to sleep, so I decide to close my eyes and drift back to sleep too.

I awaken at 6:00am. I consider the new bag I have hanging from my stomach. I realize I am the less than one percent. I am the one that couldn’t get fixed so easily, and ended up with a colostomy. I now have a stoma, a piece of my intestine, sticking out of my belly. It looks a little like a rosebud. A rosebud that spews poop. It also makes loud farty noises at unexpected times. Maybe I’m a little warped, but I think this is hysterical. It happens, I have no control. It is loud and unapologetic. I don’t know why I find this so funny, this was not the way I was raised. You don’t make those noises in public. And here I am, with no control. This should be interesting.

The downside of this little poop bag is that now that is all I can smell. I can’t stand it. I wait until 9:00am to call Kaileigh and ask her to bring me some flowers. I need something to put on my rolling table that smells better than I do.

The nurse comes in and suggests I take a sponge bath. Although this is nothing close to a shower, I am so glad to get all of the gunk from the previous day off of me. She has given me lots of facecloths, so I can scrub every part that needs scrubbing. It feels good to be clean.

Once that is over with, already I am bored and looking for something to do. I have brought a drawing book, and start to make circles. I decide I will fill the page with circles. This will be my goal for the day. I envision the page covered with beautifully detailed circles and start. It is a long, slow process. These circles take a long time. Maybe this is symbolic of my illness.

Kaileigh and Ayla come in early along with Chauncey and Josh.

They come bearing bouquets of flowers; lovely lilies, mums, daisies, carnations and more. Flowers from my daycare moms. There is a small vase for my table, and the scent of lilies fills the room. It is so lovely. Lovely for me anyway. Lilies often give Steven a headache and irritate his asthma. He quietly takes an allergy pill and never complains.

There is also a small package for me that was left on my doorstep this morning. It contains items so useful that I can’t even appreciate yet the thought that went into them. In it I find a cami, a tee shirt, two pairs of socks and a rose scented aromatherapy spray. The spray is heavenly. I spritz it when Steve leaves the room and it lifts my spirits.

I am still sucking on sponges until my doctor visits me. I am not so much hungry as I am thirsty. Sponge lollipops are not a good thirst quencher.

Shortly after my family arrives, Robin stops in for a visit. She heard that I was asking for her when I woke up and wanted to come by to say hello. She is my age, and has a son who is close in age with mine. We talk and laugh, and have a lovely visit. I re-learn that I should not be so judgemental.

The anesthesiologist stops by to visit, the one that did my epidural. She has a surgeons cap printed with brightly colored vegetables all over it, and I ask her about it. She says the uniform is so boring, they try to outdo each other with their hair coverings. It is kind of cool to see them all together at the pre-op nurses desk with their crazy hats. It brings a bit of humor to a tense atmosphere.

She asks me how I am feeling, to which I answer fine. I am out of bed, seated in a chair, with blankets wrapped around me. I feel like I am a queen holding court. I have no pain, and if I do, there is a little button I can press that will give me a shot of relief. She checks my back, which just has thin plastic tubing running into it, but is covered by a huge, clear plastic bandage. She seems satisfied and wishes me well. She will check in on me again tomorrow.

Not only do I have the epidural line, but I am also hooked up to an IV. This means that whenever I need to go to the bathroom, I need help. Pushing an IV stand requires help from your belly somehow, and mine is a little sore. A nurse comes in to help me get to the bathroom, and then out, and records how much I have peed. They need to be sure I am getting enough fluids.

At one point I ask the nurse if I can go for a walk. She seems delighted and agrees. She tells me to take it slow, which I really have no choice in. I’m not about to go running down the hall. She tells me to pace myself and doesn’t want me to go too far. Once we go out, we have to get back. We go down to the end of the hall and turn right at the nurses station. We pass the service elevator, and turn around. We go down to the end of the hall my room is on, and return me to my chair. Well done.

Dr Lentrichia comes in during the afternoon to see me, sometime after lunch. He asks how I am doing, and I tell him I feel good. I may owe this in part to the blood transfusion I received during my operation, fresh young adult blood in my veins today.

He looks at his work and is pleased, but feels badly that I ended up with a colostomy. I tell him I respect his decision, and appreciate his good care. He asks if the oncologists have been in to see me yet, but they haven’t. He tells me they will be in later to speak to me. I tell him that another doctor has been recommended to me, Dr. Howard Safran. He brightens at the mention of the name. “Oh, I like him!” he says. I take this as one more excellent recommendation.

Before he leaves, Dr. Lentrichia tells me I can start having clear liquids. No sooner does he leave the room than, voila! I have food. The nurse must have anticipated his order and called it down ahead of time.

It turns out to be Lipton Giggle Noodle Soup, without the noodles. Something they used to sell when I was a child. I probably only had it once or twice growing up, but it is one of those flavors that is immediately identifiable. It was delicious. There was some tasty jello as well. The Italian ice on my tray was horrendous though. How can something so simple be made so wrong? Ayla and Chauncey offer to go out and get me a Del’s. That’s more like it!

My kids come and go over the course of the day, but by dinnertime, everyone is back. Sara and Alex bring dinner that was dropped by the house by one of my dear daycare moms, Jane. Caesar salad with grilled chicken and french bread. My son Alex’s favorite meal! Shortly after, Walter, Cindy, Dave and Dan show up. My niece Julia calls to say she will be by with more food.

At one point we have eleven people in the room. We are quiet though, and keep the door closed. When a nurse walks in to take my vitals, we hold our breath, wondering if she will kick some people out. “There is a lot of love in this room,” she says, and offers to get us more chairs. She takes my vitals and leaves.

We all sit around, talking and taking turns drawing circles in my book. There is a lot of art happening in this room, a really nice evening. Shortly after my friends leave, my niece, my kids, Steven and I all watched a video on how to change an ostomy bag. It is gripping TV (not!). I am touched that so many people want to learn about it with me though.

I am tucked into bed by eight o’clock, with some toasty warm blankets on top of me. Jean, who was my nurse last night is my nurse again this evening. She has finally stopped blessing me, crossing herself and looking heavenward each time she talks about my condition, and now we just speak of family and things we have in common.

Cancergirl and Radioactive Man Visit the Hospital

I wake up, and it seems like any other Monday. I need to make sure all the groceries and supplies that have been gathered over the weekend are put away. I need to dust and vacuum and make sure the bathroom is clean. I need to make a list of daycare food and activities for the week according to the weather. Around 7:30am my first child arrives.

The weather is nice today, so it will be a playground day. On these days, we draw and play games, eat breakfast and play until our whole group has arrived, then we head off for a morning at the playground.

I need to be at Roger Williams Hospital at 11:30am, so Alex takes over playground duties for me. By 10:00 the kids are all sunscreened and ready to go. I give Alex and Sara a big hug and they head off to their playground adventure.

Ayla and Chauncey are on their way over, we are going to have a convoy to the hospital. I get the bag that I have packed, not sure how long my stay is going to be. If it is laparoscopy it will be quick, just a day or two. If I have more extensive surgery it will be longer. I don’t want to have to watch tv all day, or be bored, so I bring knitting, books, colored pencils and paper.

In rummaging through my stuff I find a pair of scissors that belong to the church office. We laugh about the scenario that must be going on there upon finding the scissors missing. Bedlam for sure! I ask if we can drop them off on our way in. It will kill some time I say. Really, I am feeling guilty that I have them. I hate it when I can’t find my scissors.

Finally, I can wait no longer. We pile into two cars. Ayla follows us to 1st U, and Steve goes in to return the scissors. We drive across town and arrive at Roger Williams Ambulatory by 11:00, half an hour early. We go in anyway. I sign in and settle down in the waiting area. They call me within minutes.

I am not sure whether or not I give hugs to my kids or just hurry in. I hope I gave hugs.

I realize that from this point on, things suddenly become harder on everyone else. I am going in, and know what is going on with me. They all get to sit in this waiting area, and just wait.

As soon as we walk in to the admitting area, a fire alarm starts blaring, a strobe light starts flashing. Did I do that I ask? The swinging doors to the admitting area are marked with a large sign, “OPEN THIS DOOR FIRST” Did I open the wrong door?

The receptionist waves that thought away with her hand, and motions for us to sit down. She is sitting just behind a wall, able to block out the strobing light. We are seated perpendicular to it, and it flashes in our eyes. A recorded voice comes over the loudspeaker. “Fire in the second floor stairwell, fire in the second floor stairwell, it repeats.

The receptionist sighs and continues on with her work, starts asking me questions. I wonder how she can just ignore this and carry on. I realize it must happen often. Finally the alarm stops and the all clear is given. It was a false alarm.

My medical and insurance information is recorded, and Steven and I are ushered into another area behind more swinging doors. We are shown to a room with a recliner for me and a chair for him. I wonder about using the bathroom.

I am given a bundle of clothing and instructed to put them on, and to put my street clothes in the large, clear plastic bag they have provided. Everything must come off, right down to socks and underwear.

The johnny they have given me is thick, and warm. It is a light blue with almond shapes that have brush stroke lines on them. Without glasses I imagine they are foxes jumping. When I put my glasses on, I am disappointed. They are just plain ugly. I put on the gray slipper socks, the kind with the non skid backing. They are one size fits all, but are still a little big on my size ten feet.

My favorite part of this ensemble is the mushroom hat. It is this huge, ridiculous cap that you cover your hair with. I just know it looks great.

They ask me if I still get my period which I do. They then tell me they need a urine specimen. I know there is no pregnancy going on here, Steve had that taken care of long ago, but they need to see for themselves. Besides, I still do need to pee.

As I enter the bathroom, I take a look at myself in the mirror and laugh. I look like a mushroom person from some video game. It turns out that I didn’t really need to pee, it must have been nerves, but I manage to eek out enough for their test.

When I get back to the room, I have Steven take a photo of my mushroom hat for the kids out in the waiting room. We also tell them that the pregnancy test has come back negative.

Things seem to move right along at first. There are people in and out of the room asking my height and weight over and over again. They come in for temperature, blood pressure, oxygen levels. After a short while though, it all stops. We sit and wait.

We see my surgeon, and this is exciting. He comes in, asks about how I am feeling, and how the weekend went. He tells me he has a few operations ahead of me, but I am in the lineup. He’ll see me in a few hours.

We decide we are not in our own television show here, we are in his. He’s House, with the action packed schedule, curing all the ills in the world. We are just a plot vehicle. We might get our names in the credits. Our kids out in the waiting room are even worse off. They won’t even get listed.

Some time later anesthesiologist comes by. Dr Connley. He’s got regular scrubs on and this crazy red white and blue Harley Davidson surgeons cap on. He’d very nice. He asks about my understanding of the operation, about medications or reactions to medications. There are none. He explains what will happen, how they will slowly creep up the anesthesia, how I will feel like I don’t care about anything, drift off and then slowly wake up. I understand all of this and am good with it. He asks if I have any questions about anything, we chat pleasantly and he goes off promising to see me soon.

In hindsight, the wait was really long. Hours long. Getting there early wasn’t helpful. It seemed like after a while the nurses were embarrassed to look at us we were there so long. It felt weird. There was this one nurse who would go to the desk from time to time, and look our way, when I wished she wouldn’t. She looked like she was having a terrible day, and I hoped she wouldn’t talk to us. After a while though, she was the only one looking my way.

Finally the anesthesiologist comes back. It seems he and Dr. Lentrichia were talking during one of their other operations and decided an epidural might work best for me. I remember these from childbirth options, but never had one. He describes the process to me, which sounds fine to me, so I agree. Of course there is paperwork for me to sign.

As soon as he is done, as if waiting in the wings for him to leave is another anesthesiologist. She pretty much repeats everything the other guy has just told me and gets me ready to go.

A nurse comes in and tells me to say goodbye to Steve. We hug and kiss, and he goes out into the waiting room to join the kids.

I go to the bathroom even though I haven’t had anything to drink since last night at 10:30pm. It is around 4:00pm now. I climb on board my bed and off we go, to the other side of the wall.

Here, there are people covered in cool inflatable blankets to keep them warm. Most everyone is asleep, but there is so much activity going on.

They pull a temporary curtain to the end of my bed for privacy, and get me a little stool for my feet. It looks like a milking stool. The grumpy looking woman from the nurses desk comes over and stands in front of me. I need to arch my back just right so they can insert a needle and then a tube between one of my vertebrae. The grumpy woman holds my hand and tells me I can lean into her while I arch my back. I put my head against her belly while the line is inserted, and very quickly they are done. I ask the nurse her name. She tells me it is Robin, but that no one ever remembers her.

They wheel me to the OR, and I must be having the I don’t care drug, because I don’t. I look around the room, see the big lights overhead and a bookshelf with glass doors past my feet. I see faces obscured by masks, but no one I recognise. Dr Lentrichia comes into view and says hello. Someone starts fiddling with the lights, and I am out. I don’t remember a thing until they are wheeling me back to recovery and I hear someone saying my name. I open my eyes and I am back in recovery room where I had the epidural. There is no one left, I am the only one left, just me and a nurse named Ann. I ask for Robin and find out she went home already.

I don’t remember how long I was in recovery, but it doesn’t seem long. Dr Lentrichia comes in and tells me he has spoken with my posse out in the waiting room. It seems a bunch of friends have joined my familythere, and they are eating lasagne that my sister in law has brought over.

He may have told me what was going on at this point, but I don’t remember. I must have still been feeling the effects of the I don’t care drug. Somehow I get to my room. I can’t remember who was with me, or how, or whether I changed beds. I do remember Ann taking out my catheter. I don’t think she thought it was the best idea.

It turns out Steve was with me in the recovery room, giving me water sponges for my dry mouth, and listening to me tell him the same Robin story over and over. He tells me we took the elevator to the fourth floor and I chatted with the nurses. When we arrived at my room, two nurses and an orderly easily and quickly lifted me over to my room bed. I only have the faintest memories of these events, and at this point, I think they are more Steven’s than my own.

I remember feeling happy when my children file into the room. They tell me of their wait, of coloring in a Curious George coloring book, of taking trips to the gift shop and playing games. They tell me about all this, but I don’t remember much of it, only after it is repeated days later.

My family stayed a few hours while I settled in. After they left, I had my first challenge. Going pee. I had a catheter during the operation, and apparently once they take it out, you don’t just start to go pee again. My nurse helped me over to the toilet and we ran warm water, and put my hands in the water and I tried to relax enough to go. Nothing seemed to work. The nurse was not too concerned, and explained that it often takes a little while for things to start working again after an operation and catheterization. She set a goal of going by 4am.

Steve wanted to stay in my room, so a reclining chair was found for him, and a blanket. He stayed beside me all night, holding my hand and giving me water from the sponge lollipops I was allowed to have. It was so reassuring to have him there.