Friday, August 29, 2014

Tuesday August 5, 2013

Fingers are still tingling this morning and my left eye is dark underneath, but getting lighter.

I go with Steven to a doctor's appointment today. He needs to get his blood pressure checked.  It seems he has white coat syndrome, which causes his blood pressure to rise at the doctor's office.  Even the mention of a trip to the doctor's office makes him visibly nervous.  He finds out that his father has this same problem and needs to get his blood pressure checked someplace away from the doctor's office.

At knitting this evening, one of our friends may be coming fresh off of an MRI and will be feeling a little relaxed from the medication she needs to take to deal with it.  I just came off of my chemo on Sunday, and an still a little dopey.  We decide that we will do some kind of crazy drugged up knitting to celebrate.

A few of us bring some funky eyelash yarn we have in our stashes from when it was so popular.  We have some bright colors from a stash that was donated to us, probably dating back to the seventy's or so. We decide to yarn bomb one of the lamp posts in front of the church on Benefit St., but you didn't read this here!  Technically this is a form of public art, and can be considered graffiti. We are such an edgy group!

We are off to a good start, with some large pieces that came with the donated yarn stash.   Our  pieces work up quickly, but they don't get stitched together tonight. We will install our piece next week.

On the way home, I get a ride with a friend who struggled with cancer some years ago.  We talked about different treatments and the reactions of people as they have them.  Some tell very few people about what they are going through, others have no problem sharing.

Keeping everything in seems so isolating to me.  I don't know if I would have felt this way when I was younger, and there are things I wouldn't share online with everyone.  But health seem so universal, something we all worry about.  We should talk about it more.  It helps to get it out there so people know why you are wearing gloves in the middle of the summer, or why you are so bossy to people who are with you at the grocery store.  It leads to understanding and compassion.  It seems like the most human of things to share.

Having this conversation helps me to realize that not only am I going through chemo, but I am also at some point heading for an operation or two that I need to be strong for.  I need to make sure I am building my strength to get through this upcoming conclusion to my treatment.  I haven't really thought about the ending before.  If this is not incentive to eat well, exercise, and continue to gain weight, I do not know what else is.     

Thursday, August 28, 2014

Day of the Undead

I wake up and my eyes look like I have joined the ranks of the undead.  There are dark circles underneath, and my eyes continue to tear.

There is only a small group of children coming today, so Sara watches them while I figure out Dr. and hospital bills.  They have been coming in, and I have just been piling them up.  Today is the day to spread some money around to try and make everyone happy.

I try to call Roger Williams Hospital to arrange a payment plan, but am put on hold.  After five minutes, I get a message saying all lines are busy, leave your name and phone number and they will return your call, or stay on the line and your call will be answered in the order it was received.  I leave a message.  It takes a few hours, but they do get back to me, and are happy to arrange a payment plan.  The woman on the line seems relieved that my call is so easily handled.

During nap time, Sara goes to the library to get new books for the week.  When she returns, I go to Whole Foods, since I didn't do my shopping over the weekend.  Alex comes with me to be my hands.  I can pick up very little in the produce section, and nothing in the refrigerated sections.  Even with my gloves, when my hands get cold, it is hard to get them warm again. 

By the time we get home, my hands have warmed up, and with my gloves on, I can quickly put things in the fridge.

After work, Ayla comes over to help me with my Stop and Shop trip.  It is great to have so many helping hands.

When I get home, I water the garden using two layers of gloves.  Did I mention this is August 4th?

Later in the evening, I eat warm chocolate pudding with whipped cream. It is almost as good as ice cream.

Wednesday, August 27, 2014

Sunday, August 3, 2014

I get up and get ready for church.  I am planning on going to the service, but up in childcare, there are seven children today, three regulars and four who are visiting from other states.  I already know that the regulars want to paint bowls with the leftover materials from the GA, so I decide to stay and help.

There are two young women who have gone through the religious education program in our church who are the regular child care providers this summer.  One is a senior in high school and the other is in college.  It is so cool to have seen these young people grow up in these classrooms, taking care of the young children now.  They are kind and patient and enjoy playing with and talking to the kids. It makes my heart happy to watch them.

I go outside when church is over, to see who is at coffee hour.  There are a lot of people there, and I am not really up to socializing.  I go out the atrium door to find Steven who is waiting to bring me home.

This is my last day on the chemo pump, so I need to get home and wait for the nurse to come unhook me.  So far, aside from feeling a little tired, and the rumblings of nausea, I haven't had too many side effects.  The Psi bands have helped quell the nausea, and occasional naps help the tiredness.  I still feel tingles when I touch anything cold, but I have been trying to be better about remembering to put on my gloves.   My eyes have been running, and at first I think it might be from allergies.  I look up the list of side effects and find that this is a rare side effect.  With the last treatment my eyes got a golden hue beneath them, today by the end of the day, my left eye looks like someone has punched me.  I am wondering how it will look tomorrow.

Today it is overcast and cool, and I am really feeling the effects of the neuropathy.  Suddenly metal gives me finger tingles.  I was warned to be careful in the colder weather, I didn't expect August to be a month where I would have to worry about this so much.

I have had to start thinking about wet and cold in very different terms, and have had to start thinking about things that most people give little thought to.  When I went to get a pitcher of water for the kids in childcare this morning, I couldn't test the water to see if it was cold.  I decided to skip putting ice in the water since I didn't have my gloves with me, and there was no one available to get it for me. 

When I went to rinse the paint brushes after painting, the water was cool.  I was careful not to get it on my hands until it finally warmed up.  Then I could finally wash off the paint that was on them.

If I wear my gloves, I have to be careful not to get them wet.  If I go to the bathroom, I have to wait for the warm water to come up before I can wash my hands. I can't even garden today because the dampness quickly penetrates my gloves.  All of this extra thinking is exhausting.

Tuesday, August 26, 2014

Moving Day

Saturday, August 2, 2014

I drive my son Alex to work at six this morning. I am disappointed to find that my fingers are getting tingly when I touch the steering wheel.  This is totally unexpected as it is not that cold outside, and I do not have any gloves with me.  I pull my sweatshirt over my hands so I can drive. They tingle until they get warm.

Kaileigh calls at seven twenty, she and Josh  are ready to start unloading the truck.  She though they might sleep in this morning, so I am not quite ready to go. We leave Providence around eight, and have no trouble finding our way to the new apartment.  It is in Somerville, near Tufts University. When we arrive, they are already unloading boxes and furniture from the uhaul, and with the help of Josh's friend Cass and his brother Ben, we are done well before noon.

The apartment is very nice, three bedrooms, one bathroom, kitchen, living room, dining room and a large entryway.  It is already full of boxes from Ian and Anna, friends that Kaileigh and Josh are sharing the apartment with.

I am glad I can help with the moving, and that the positioning of my bag is such that I can hold things to one side on my right hip easily manage to carry things. My chemo backpack keeps everything safely out of the way. I have dressed in jeans a tee shirt and a long blouse, but often my bag peaks out from beneath my shirt. I am very self conscious about this and keep tugging at my shirt to keep it hidden.

 Kaileigh and I start to unpack the kitchen.  It is fun to open the boxes, and see what is inside.  Since the two couples are combining households many of the boxes hold new surprises.  We sort through duplicate items and decide where the most logical place to put things might be. Kaileigh finds it a little overwhelming, but I enjoy sorting through these things and finding new homes for them. 

Around noon time, we decide to break for lunch and head to Davis Square, which is a ten minute walk away.  The neighborhood seems lively and diverse, with many ethic restaurants, a nice looking little library, many churches and a Museum of Modern Renaissance.

We eat at a restaurant called Amsterdam, which sells only beverages and falafel, which you top with delicious items from their salad bar, french fries, and salad. It is a long narrow restaurant with only a few tables.  The tabletops have holes cut into them to hold your cone of falafel or your fries, which are served in a paper cone.  The walls are covered with photos from Amsterdam and old rock show posters from that city.  There is a mural of a large, beautiful tulip behind the counter which seems three dimensional, because the color causes it to appear to pop out from the background.  It is beautiful.

When we get back to the apartment, Kaileigh and I continue to unpack the kitchen until about three.  This is when I get so tired, I know I will not be able to do much more. We say our goodbyes, and head back to Providence.  I doze as we go through Boston.

As we get closer to home, a plan for dinner materializes.  Dan calls and wants to bring over pizza.  By the time we arrive back in Providence, we are having a spontaneous dinner party at our house.  Dan, Dave, Tangie, Adam and Walter are all coming over to share the pizza.  I also have fettuccine, eggplant and salad in the fridge that Amy brought over last night, and some other delicious leftovers from the week, chicken cordon blu from Heidi, a little bit of Captain Tom from Joan. It is a lovely way to spend time with friends and it helps us not waste any of the delicious foods dear friends have brought us during the week.

Monday, August 25, 2014

August Already!

Friday, August 1, 2014

August already, and time for my third chemo treatment.

We drive to the Miriam, and arrive by eight forty. There are few people in the waiting room today, and I am registered and called in quickly.

Faye is my nurse today. She was my nurse on my first trip here. She remembers me very well, and I can't even remember her name. I keep trying to get a look at her name tag, but it has flipped around so I can't see it. (I don't figure out her name until two weeks later when I am at chemo with a different nurse when I figure it out.) I feel terrible that I don't remember her name, and feel too embarrassed to ask.

Faye draws my blood and sends me off to get weighed and have my vitals taken by this other very nice woman, who by now I should also know the name of. I will be sure to figure it out the next time I am here. She weighs me and I have gained five pounds. This is great news, and everyone is happy about it.

I go to visit Dr. Safran, who is pleased with how things are progressing. He notices my tattoo, and asks me to tell him the story behind it again. He thinks it is great.

I go back to the pod I have chosen to be in today, number six. It is a smaller room on the corner of the building, with lots of light due to the extra window space. Faye starts me on my pre meds, saline and iron. It takes a long time for my blood work to come back today, it turns out my platelet count is low, only one forty. When the count is low, they have to count them without the aid of a machine, and it takes longer. I picture a person in a lab coat looking through a microscope, counting with the aid of a probe, one platelet at a time. One fifty and up is ideal, seventy five is low and would put me off my chemo for a week. One forty is within range. Now that the count is done, things can get rolling. We are only half an hour behind.

A volunteer comes by offering to do reiki on me. I accept her offer. I have never had reiki before and am curious about how it works.

It starts out with a gentle guided meditation, followed by a laying on of hands. She starts by touching my ankles, working her way up my body, my knees, hips, abdomen, shoulders and head. It is a firm and comforting touch, with warm, gentle hands.

It is relaxing until she gets to my abdomen. I feel very anxious as she works here. I concentrate on my breathing, because I can feel i quickening. I breath in and out, trying to be slow and steady. I still feel uneasy, and I don't know why. Is it the cancer, or is it just fear?

When she touches my shoulders I feel calm again. By the time she reaches my head, I feel very relaxed. I wonder if I should just fall asleep? I could, but I don't. I lay there for a few moments and then open my eyes.

The woman, Claire, is still there and asks how I feel. I am calm and relaxed. She tells me that she is a cancer survivor too, and that this is her way of giving back to the community for all that she received when she was going through treatment here.

Right after she leaves, my daughter Kaileigh calls. She is moving to Somerville today, and is about to start the six hour drive from Ithaca, New York. Steve leaves for lunch while I am talking to her.

We are going to see Kaileigh and Josh's new apartment tomorrow and help them unpack. We are all looking forward to it. It will be so nice to have my daughter be an hour away after seven years of lengthly commutes on our rare trips to visit her.

The lunch lady comes by while I am on the phone. I put the phone down for a minute to see what my choices are and get offered anything on the cart today. There are sandwiches, salad, and soup or American chop the lunch lady can warm up for me. I get a tuna sandwich on swirly bread with some potato chips. I finish my call with Kaileigh, and then devour my lunch. For some reason, chemo makes me very hungry.

Once lunch is over, the lunch lady comes back to offer dessert. I have already decided I would like chocolate pudding today. She returns a short time later with tapioca. It is funny because that is the one flavor that she didn't offer me. Faye hears our exchange and gives me a look that says, "what can you do?" I shrug back.

I seems quiet on the floor today. There is little overflow of conversation from anywhere. The nurses are all so busy though. I am still trying to figure out how things work here, there is this whole other half of the room that seems to have different nurses attending to it. I see them drift over to my side of the nurses station occasionally. I need to ask about that next time I am here.

By two forty five, I am hooked up to my Fluorouracil pump. Time to go home now.

At three o'clock, I arrive home to find the kids seated around the kitchen table having snack. I take the first to finish outside and soon we are joined by the rest of the snackers. I missed the playground trip this morning and I hear news of it now. We have races in the driveway. My favorite is the super slow turtle race. One child takes nearly ten minutes to slowly creep up the driveway to win the race. What patience!

Joan brings me a delicious meal this evening, called Captain Tom. It is chicken, raisins and tomatoes, spiced with Indian spices and served over rice with yogurt. I love Indian food, and this is a combination that my whole family loves. We also enjoy salad, fruit tarts and there are some Oreos for later. Loved and nourished once again.

I am tired after chemo, but Steven is really looking forward to seeing Guardians of the Galaxy this evening. We decided to go, and Alex and Filipa join us.

When I go to the movies, I usually make a stop in the bathroom before it starts. This evening was no different, except it required more thought than it should have. I have carried my backpack into the cinema because I need to take it off in the car, so when I get into the stall, I need to hang it up. The hook on the door is too far away so I set it on the top of the toilet paper holder. When I go to flush, it occurs to me that at home I would need to close the cover, and then flush twice. The first time to get rid of any waste, the second time to be sure all of the chemo has been cleared away. There is no cover in this bathroom. With a super powerful flush do I still need to flush twice? How many other people have passed through this room wondering the same thing? Did they flush twice, did they even think about it?

When I go to wash my hands, the soap is cool and shocks my hands. The only way to get it off is to run my hands under the cold water that is coming out of the faucet. I quickly run my hands in and out, hoping I can get the soap off before my hands register the cold.

I hang my backpack over one shoulder, and my handbag over the other. I give my ticket to the ticket taker, and pause for a minute to look around. I do not know if Steven has gone into the theater, or if he is still in the bathroom. I notice the security cop is looking at me from across the room, and decide to go into the theater. As I make my way there, Steve comes out of the bathroom and I wait for him to catch up. I see the security cop talking to the ticket taker, and they are both looking at me. I think the ticket guy is reassuring the security guy that I don't have anything in my backpack to be worried about. There is surely no bomb, and most likely no candy.

Sunday, August 24, 2014

Thursday, July 31, 2014

I wake up and still feel like I smell bad!

I actually make myself a smoothie this morning.  We made smoothies at our knitting night pot luck that was at my house last night, so all of the ingredients are easily available.  To those of you who regularly do this, it may seem like no special feat, but you must understand, I am not one to put all this work into my breakfast.  I like it quick and fast, like a bowl of fruit and yogurt.  To put everything in a blender, the fruit, yogurt and juice, mix it up, and then pour it into a glass, this is too many steps for me.  At the end, when you are all done, there is the messy blender to clean. This always seems like too much work for me. I get over my laziness and put all the fruit into the blender and mix it up.  It is good.  Maybe I do like smoothies for breakfast after all.

The visiting nurse stops by this morning.  She had left a message on my phone, but I hadn't noticed it and was surprised when she came to the door.  I thought I was done getting visits, since I hadn't heard from them in over a week. 

I brought the nurse into the living room while all of the kids were there.  I thought she was going to just do the regular stuff that gets done, temperature, oxygen, pulse, blood pressure and listening to my lungs.  It turned out she was discharging me from the visiting nurse service though, and had many questions for me.  She was a good sport, she answered questions from the kids and gave them a demonstration of how things work.  They were all very interested. 

Since the nurse had many questions that seemed like they would continue on for a while, Sara took the kids outside to play until we could all go for a walk. They were very excited to about going today, because we were having a butterfly parade.  We had crafted butterflies out of tissue paper and pipe cleaners and suspended them from long sticks.  When I was done with the nurse, we paraded around the neighborhood, showing off our beautiful butterflies. We had a grand time.

I stopped by my stained glass class in the evening, with the intention of doing some work on my window.  When I got there, I was too tired though, so I just visited before leaving.  Each week I feel sad that I don't get any work done, but I really need to focus on what I am doing, and I can't do it while I am tired.  Maybe I need to start a smaller project.

It turns out, what I really need is some ice cream.  The coldness sensitivity in my throat will return tomorrow when I get my chemo, so I want to enjoy some while I can.  I stop at the Lincoln Creamery on the way home and enjoy a hot fudge Sundae.  Ice cream makes everything better!

Friday, August 22, 2014

Monday, July 28, 2014

I awake extra early this morning, at four o,clock, and can't wait to go for a bike ride.  I don't want to go too early, so I start doing my morning routine to pass the time. As soon as it starts to get light, I head out.  Yesterday I made it around the Boulevard one and a half times, and I want to do this again.
I make it.

I don't have finger tingles today, so I decide I should plan ahead and do those things I can't do after chemo, like wash floors.  It seems like such an insignificant thing, and it is not something I am fanatical about, but when you want to do it, and have the time to do it and can not, it makes you feel very helpless.  I guess this would be the time to get a mop, but nothing beats washing the floor on your hands and knees for getting every spot.  And mops, although they don't take up too much space, they do take up some, and honestly, I still haven't figured out where in my house my vacuum cleaner is supposed to go.  I'm hoping some heavy rubber gloves might help solve this problem, but I keep forgetting to buy them.

We make m&m cookies with Ghirardelli chips and deliver them to friends around our neighborhood. The chips are an extra special bonus today, I found a bag in the cupboard when I was searching for more M's.  We need two bags but only had one. 

My dad, who has no kidneys and has dialysis three times a week needs to have his port flushed today.  Sara picks him up from dialysis and brings him to Miriam Hospital, comes back to daycare, picks him up, brings him to dialysis, picks him up again and takes him home. She does this often, without complaint. Who is the superhero here?

Today I experience diarrhea with an ostomy bag.  I had asked my visiting nurse about how to deal with this when I started chemo, since they list this as one of the possible side effects.  I had dealt with small amounts before, but this was more than I anticipated.  And very awkward.  Imagine standing, talking to someone, while this bag that is protruding from your abdomen fills up with this most vile liquid.  As your bag grows so big, between the poop and the gas, you are afraid it might burst before you get it open.  Meanwhile, you are worrying about how you smell.  I can smell the poop, can everyone else? 

Yesterday I started teaching one of my first daycare babies how to drive.  Her mom was nervous about teaching her, and I have experience after teaching my three children to drive, so I volunteered.  It is the opportunity to spend time with an important person I love, but seldom find ways to spend time with. 

She did excellent, even being in a small car with a person wearing a very fragrant poop bag.

Tuesday, July 29th

When we went to the playground this morning, the fountain was working!  This was very exciting, since we had given up hope that it would be turned on at all this summer.  We love to play around the fountain, even when it is not on, but having it splash out water while we throw in wishing pennies is one of our favorite activities.  If the water is high enough, and it is hot enough, we even get to stick out feet in the fountain.  This makes a summer day in the playground even more perfect.

The lemonade man also came today, nice and early.  It was very warm out, and being more than a week out from chemo, even I could enjoy a cup. My fingers still got tingly, but a tissue wrapped around the cup solved that problem. We were a happy bunch when we left the playground.

At knitting this evening, I got a preview of the afghan my knitting friends have been working on for me.  Dana is making beautiful flowers to put on it, roses and lotus blossoms.   It is going to be beautiful.

I am very gassy at knitting, but my friends just laugh with me. 

Wednesday, July 30th

I am tired of smelling like poop.  Was it the kale I had with dinner last night, or maybe the onions? Is it from the food I ate over the weekend? Is it just my body dealing with the chemo I had last week? How many things do I have to try eating again to see if they are the cause of this foul scent? By the time I get this all figured out, hopefully I won't ever have to think about it again.

Wednesday, August 20, 2014

Sunday, July 27, 2014

This morning for the first time in months, I feel like sharing myself with Steve.  I have thought about it often, but have lacked the energy for snuggling, never mind anything else. Sometimes I have felt guilty, other times I have felt downright bad over the length of time that has passed without doing something that has throughout our relationship has been such a pleasure.

It is difficult to feel like you are the kind of desirable person you want your soul mate to see you as when you have a bag and lines and ports in and hanging off your body.  These things make you feel tired, grumpy, unattractive, even a little alien. I lie there in my bed, feeling fine in my body, by myself, but the thought of someone touching or kissing and being intimate with me in a physical way is not what I want.  It doesn't even cross my mind. I know this is something I should enjoy, and that my husband would really love to have happen. Instead, he settles for holding my hand, and the now a days rare snuggle. He lets me take my time, and waits for me to be ready.

It is a strange place to find yourself in after twenty five years of marriage.  There has been the natural ebb and flow of emotion in our relationship.  There have been times when we have felt misunderstood, or distant, times of distraction or annoyance.  But there has always been a desire for physical closeness and contact that has never waned.  There has never been a fear of expressing our affection publicly, something that used to drive my mother crazy. We hold hands, we hug, we kiss.  We still do all of these things, after all these years, something that sometimes disappears from relationships that go on as long as ours has.  These are things that I feel are wonderful, magical and important in a relationship.

But this other part, the desire part, which is so closely linked to feeling desirable, this has been difficult.  I am aware of it to the point where I will try not to start anything, because I know I will not feel like following through with where it may lead.  This takes a lot of playfulness out of a relationship.  It also makes me long for things I wish had not changed.  Simple things, which may sound childish, like first thing in the morning laying down on top of Steve to say good morning and give him a kiss.  It is so comforting and lovely, but I know I only do it occasionally now, and it is because of my ostomy bag.  I know Steve doesn't care about it, but somehow it gets in my way, both physically and mentally.

Steve doesn't in any way buy into these things that I am feeling.  If he does, he never expresses it.  He still tells me how beautiful I am, and tells me he thinks all my new additions are cool, and even if I don't feel this way, I believe he really doesn't care about them. He has totally accepted these things about me, and is glad that they exist.  Without them, he tells me, there might not have been any more of you.

So on this morning, after a Saturday that felt like something normal, I decide it is time.  I shower, and snuggle, and let one thing lead to another. It is wonderful and tender, and long over due.  And I realize how tired and strange my body has been feeling for months, and how finally, it is feeling like it is getting better.

Tuesday, August 19, 2014

Saturday, July 26th, 2014

I have a lot to do today, so I get up and go shopping early.

As soon as I pick up a piece of produce, I am disappointed that the cold tingling in my fingers is still so strong.  I need to wear my sweatshirt and gloves to make it through the grocery store.  I thought that by now my sensitivity to cold would have faded, since it is nearly a week out from my last chemo treatment. I am coming to realize and accept that with each treatment it might last longer.  This is fine for the summer, but here I am, the end of July and my frozen touch is already bothering me. I am hoping for a warm autumn so I can continue this treatment with few problems.

I am feeling lucky that out of the blue, my friend Melissa has sent me a cozy green scarf and gloves.  She thought I would find them useful as the weather grows colder, but without even knowing it, she has sent me the very thing I need right now.  I am warmed by her gloves as I stroll through the grocery store.

Once my shopping is done, I head out to Little Compton.  One of my daycare families has rented a house near the beach, and is having a gathering. I always want to go to the beach in Little Compton, but it is so difficult to find one there.  They are all hidden behind fields and meadows.  It seems that this is the only way to get to one here, to know someone who has a house.

I am afraid of getting a sunburn. This is something I would normally be prone to anyway, but some of my chemo drugs have a sun sensitivity warning.  I cover myself up as much as I can, and slather on sunscreen before heading out.  I plan on only staying a short time, and am hopeful I can escape without a burn.

I park in the yard of the old farmhouse my friends have rented, where a sign tells you that SUV's might be okay to travel down the road to the beach.  That leaves out the borrowed Prius I am driving.
The house seems so quiet that I think everyone is down at the beach, so I head on down.  It is located down a shell paved farm road that goes through fields of vegetables, meadows and cows, until finally you find the beach.  It is maybe a ten minute walk, but I am in an unfamiliar place, and not really sure where it is I am going, so it seems much longer. I see some cars parked down one of the paths, and head toward them.  I find a cute little shack standing guard by the path to a rock strewn sparkling beach.  In the water I can see a few children playing on boogie boards, and a couple of adults on the shore.  I walk over and recognize two of the children and their dad, David.  Somehow I missed all of the others gathered at the house.

I go off with one of the boys in search of crabs on the rocky shore.  They know where to find them after being here all week.  They expertly tip rocks out of the watery, sandy shore, and look for spidery looking crabs which hide beneath them.  It is fun to watch as they try to pick them up quickly, mindful of those sharp pinchers. It is obvious that they have done this often, and have been pinched once or twice.

Before long, I need to get ready to leave.  I know this is going to be difficult, because other people are just starting to arrive on the beach.  As I head toward the path leading off the beach, I collect rocks that will line the zinnia garden at my house. As reach the grassy hill that leads to the road, I am greeted by Amy, who along with David, is hosting this party, and Kristen, who has just arrived with her family.  It turns into a big hug fest and they offer me a ride back to the house.  I accept, but ask if I can collect more rocks since I had only gathered what I was willing to carry back. They help me gather rocks, and are joined by yet more daycare family.   Somehow we all end up finding heart shaped rocks on the beach, a gift from the ocean for us. 

After a tour of the lovely old beach house that has been rented, I head back to Providence.  I want to stop at a farm stand on my way home, to get some fresh blueberries.  I have a birthday party to go to next, and after the delicious berries I had earlier in the week, decide that this is what I must bring.  Unfortunately, I decide to take the longest possible way home, and it seems to take forever.  I am impatient to reach my next destination.  Fortunately, it is Saturday afternoon, and my favorite NPR programs are on.

Next up is a birthday party for one of my current daycare children.  Once I have aquired the blueberries I want, I head home to grab the gift I have left there, and to check in with Steven.  He makes the blueberries look pretty by placing them in a bowl and adds some mint leaves for decoration.  I was just going to bring them in their little green cartons, but this looks much nicer. 

He is heading out soon, so I won't see him until the morning.  I head off to the party, just a few blocks away.  Normally I would walk there, but my busy morning is starting to wear on me, so I drive. 

It has been sunny and warm today, but now that I am at a pool party, it is getting cloudy and cool.  This doesn't dampen the spirit of the party though.  Parents and children are enjoying the pool and the compamy.  If I weren't in tingle finger mode, I might join them in the pool, but this is out of the question today.  Even getting a drink out of the cooler is a bad idea.  Fortunately there is warm food, blueberries included, to enjoy along with the company of parents that I don't usually get to hold complete conversations with. It is fun to see the kids outside of my home, when we can just hang out together.

I only stay at the party for a short time, Ayla wants to have dinner with me tonight.  She was hoping for a spinach ricotta pie, but I have been so busy, this is not going to happen today.  Instead, we order some food from the Gourmet House, an Asian restaurant nearby.  We eat at home because Ayla and Chauncey have also brought their dog Powder over to visit.  She loves to come over and run around my backyard. 

When Ayla, Chauncey and Powder leave, I am quite tired.  It is a good tired though.  It has been a full day, with only small reminders of my new limitations.  I am figuring out ways around the new obstacles that have cropped up in my life, and I am managing to carry on.  I feel good about this. 

Monday, August 18, 2014

Thursday, July 24, 2014

Last night was rough, and I can't figure out if this is because I expecting it to be or not.

I woke up about an hour and a half after I had fallen asleep and it was like I was all hyped up on caffeine.  My whole body was buzzing.  I don't know if it was from the chemo or the fan.  I do wake up like this from time to time, and wonder if the fan blowing on me somehow energizes my body in this crazy way.  Except tonight the fan is not blowing directly on me.  It is on the other side of the room, facing the wall opposite my bed.  Could it be this, or is it the chemo still working it's way out of my body that is causing this?  I had anticipated this day as a bad day, since the last time I had chemo I felt low energy and cranky on the fourth day.  The nurses had warned me that usually the third or fourth day could be difficult.  Was I having trouble because I expected it?

As I lay in bed agitated, I start to feel nauseous.  I reach for my Psi bands, which are on the bedside table, but I never quite get them on.  I wrap one around my wrist and lay there, my mind somewhere else, but not quite asleep. I finally fall back to sleep and dream.  I am sure I have dreamed since this ordeal started, but I haven't remembered any.  When I wake up this morning, I remember my dreams.

I dreamed of whales and research vessels going into the Barrington River and watching them prepare to dive with the whales.  I dreamed of rescue vehicles and my father driving too fast, but me with no fear, knowing that he was driving and that I was safe.

When I get up, I look out of my bedroom window to find it has rained out.  All of my beautiful chalk drawings are washed away.

The day is cool and clear, a perfect playground day.  Soli, one of my daycare moms, finds us in the park and brings us popsicles.   We sit on the bench near the fountain and enjoy them.  We share one with a little boy who has joined us from the playground.  He was helping us look for treasures that the Wednesday farmers unknowingly have left us when our treats arrived.

As we play around the fountain, Raffa stops by to visit with us.  His boys are away for the week, and  he misses them.  He is happy to see us.  We miss his children too when they are away.  We will all be happy when our friends return.

Jane stops by just after lunch with the cover she has made for my ostomy bag.  It is silky and purple, and fits over my bag to make it look less conspicuoius when it peeks out from beneath a shirt.  It looks like I have a little cloth bag hanging around my waist, instead of a bag for poop.  It is so soft and pretty.  I know it will make me feel less self conscious about my bag.

After dinner, Cathy stops by for a visit, and brings me fresh blueberries she has picked for me.  They are plump and delicious and warm with sunshine.  They taste nothing like the ones I find in the grocery store, and the love and time she put into picking them make them taste much sweeter to me.

Friday, July 25, 2014

It is a fine day to make pizza today.  The weather is warm, but not too warm for running the oven for a long stretch.  After we make our dough, we leave it to rise and we head out for a walk to the Boulevard.  We stop by our friend Debra's house to decorate her walk with chalk.  She loves to have us visit and do this for her. She keeps a box of chalk in her garage, just for us!  I tell her about my sidewalk surprise earlier in the week.  We agree that this sort of thing should happen to people from time to time.  As we continue on our walk, we notice a birds nest with a mourning dove in it.  We think she must have some eggs in there.  We will keep an eye on her.

We get back to my house in time to start making our pizzas.  Each child rolls out some dough, spreads on sauce and sprinkles on some cheese.  What they really love to do is eat the cheese without putting it on the pizza.  If they get a little of it on, I am happy.  They get to eat a little, and I doctor up their pizza.

I work in the morning, but take a nap in the afternoon.  I want to go out with Steven to a movie this evening, and I don't want to be tired.  This is going to be an actual date night, something we haven't done in a while.   We go to Panera for a quick light dinner, and then to see the movie Lucy at the Lincoln Mall Cinema.  It is nice to be out with Steven without anything else needing to be done.

After I go to bed, Steve goes to pick up our friends Ellen and David from the airport.  They are getting in late, and I am tired.  We have had their car for the last couple of weeks while they were away.  This weekend, our friend Wendy has dropped her car off for us to use while she is away. I am so grateful for this generosity from my friends.

Friday, August 15, 2014

Wednesday, July 23, 2014

Everyone who comes today can't help but notice the sidewalk.  It is hard to miss, and very beautiful.  It is loved and appreciated by all who see it.  It also seems to be holding up well to the traffic that travels across it.

It is so hot today, it is a two popsicle day.  This policy insures that some of the kids that don't drink too much, get a little more extra liquid than they might usually.  It is so warm, up near ninety, that even I am noticing the heat.

A parent whose two children attended my daycare years ago, Jane, turned up on my step today, bearing cookies and bread from Seven Stars.  I am happy to see her. We catch up on how our families are doing, and during our conversation, she comes up with the most wonderful idea. She is going to try and fashion a cover for my ostomy bag out of some pretty cloth.  I am very excited.

Sara made some extra American chop suey, a dish we our grandfather always made on the Third of July before we would go to the parade.  She makes it most years before she goes still, and I was telling her I have been wanting to make some, so she made it last night and shared it with me.  Yum!  

 Steve is home and doesn't need to stay up late working on anything, and I am still awake. For the first time in weeks, I am up to snuggling in bed.  Not anything more than that, just being close beside each other in bed.  It has been so difficult with picc lines and pump lines and sore incisions and bags.  The bag is still there, but it is empty and not too intrusive.  It is nice to be able to get very close, and feel his warmth and the rise and fall of his chest as he breathes, to snuggle into his back, nestle my face into his neck and breathe him in.  It makes me realize how long it has been since we have been able to lay like this, never mind take it to other places.  It makes me a feel badly that this whole cancer thing has been such an intrusion into such an intimate and important part of our relationship, but glad that it can withstand such a trying time. 

Thursday, August 14, 2014

Artfully Amazed!

Monday, July 21, 2014

I wake up crampy. Last time I was disconnected from chemo I had taken Miralax and thought it may have caused my cramps.  It turns out that cramps come after chemo.  At least my Psi bands seem to be working well, I haven't had to use the nausea medicine at all.  I am feeling a little tired, but not unbearably so.

We have only three kids at daycare today, so we decide to take them to Ben and Jerry's.  Only one of the kids who is here today was around for the last trip, and what kid would complain about going on a bus ride to the ice cream store twice?  I was a little sad that I had to miss the last trip.

Before we can leave, we have to wait for the visiting nurse to come and take my vitals.  I no longer need any assistance with the changing of the bag, so now they come and ask me how things are going, and take the usual assortment of vitals.  I am getting a tired of this. It takes time, and I don't always know when they are coming until a short time before they arrive. I don't want to have to be waiting around for them like I am today.  I don't really think it is necessary anymore.

Once the nurse comes and goes, we can get on with our field trip.  The bus stop is a short walk up to Hope St., and we pass the time singing The Wheels On the Bus, of course.  The bus comes before we even get bored. One of the children has never been on the bus before, and is a little nervous about the whole thing.  Once we get on and put our money in the collector, we find seats that are along the windows, allowing us to hold the children safely so they can look at their neighborhood from a new perspective.  My fearful friend starts to relax. Sara and I point out highlights, like Seven Stars Bakery and Creatoyvity, places the kids are familiar with.

Now that Ben and Jerry's has moved from Meeting Street to Thayer Street, the bus drops us off right by the shop.  The kids are so excited to go in and choose a flavor, look at the premade cakes in the freezer and watch all the activity that is happening on Thayer Street. We order small cups of ice cream with rainbow sprinkles, possibly the most thrilling and important aspect of the trip.  Since we have an older sibling with us today, I let her get a regular small cone. It turns out that she can't finish it, but her little sister takes care of it for her after finishing her own.

Usually, I would join the kids in getting some ice cream, but my throat is still reacting to the chemo, and I can only eat things that are room temperature or warmer.  Unfortunately, nothing they sell here that would interest me is above freezing.

The bus stop for our ride home is just across the street from Ben and Jerry's, in front of Starbucks.  Unfortunately, our bus was leaving just as we stepped out of the ice cream store.  We occupied ourselves exploring the windows of the shops near the bus stop.  We were disappointed to find that the bank on the corner does not keep lollipops out in a big bowl like one of our Hope Street banks does.  Having just had ice cream though, we didn't complain.  Instead we went back to Starbucks and spied on people from knee level.  Because of the step up into the store, most of the window seating is higher than the heads of the kids.  They thought it was funny when I told them that people probably couldn't see them looking in the window at them.  There is also this mysterious railing outside of the coffee shop.  It is great for locking bikes up to, and hanging from.  Especially if you are under three feet tall.  Even if you are a little taller too.

Once we return to my house, it is time for lunch, and nap time.  Two of the children get picked up early, so Sara takes care of the last child, and I am free to rest.  These slow days have been extremely good to have this year.

As compensation for not being able to have ice cream earlier, in the evening I make myself some heat and serve chocolate pudding.  I have never taken the time to learn how to make pudding from scratch, so I buy the little four serving boxes at the store.  I put it in two bowls and  add a little whipped cream from a can, and dig in.  Okay, maybe it is more than just a little whipped cream, but who can resist?  Delicious. 

Tuesday, July 22, 2014

I go for an early bike ride today, and manage to get around the Boulevard in twenty minutes. I didn't push myself too much, and I don't feel tired when I am done. I think this means I can go further tomorrow.

Today it is very warm outside, so it is going to be a pool day.  Usually, I would fill the pools up in the morning, so they can warm up a bit before we go outside, but the cool water makes my fingers tingle.  I wait until Sara comes so she can fill up the pools.

We have two pools, a small one with a slide into it, and a larger one in which there may be a splashing or no splashing rule, depending on who gets in it first.  Older children often come in the summer, and although they enjoy going to a full sized swimming pool, they all love the wading pools.  It is cool splashy fun.  And truth be told, what the kids really love to do, is empty the pools.  In the garden, sand box or planters, painting the house, washing things with scrub brushes, and dumping water on the house and each other.  They like to empty the small pool, sometimes from splashing, sometimes from dumping, and then take the water from the bigger pool to refill the smaller one.  Why?  All I can say is they make it look like fun.

Usually I would join in on the water fun, wading in the pools with the kids, splashing or  getting water pedicures, but not today.  I have to keep away from the water.  Even though it is warm out, I do not feel hot, I feel just right.  The water is so much fun, but I have to view it from a dry place.  Sometimes these days I feel like I'm Elphaba from Wicked.

One of my mothers, Ayako, makes me some soup for dinner. It is rich and hearty, full of vegetables and beans. I wish I could make such delicious soup.

Tonight is knitting night, and because I have my friend's car, I drive myself.  I end up wishing I had shared a ride with someone else.  As I pull up to my house, I find my sidewalk, driveway and walkway covered with the most incredible chalk artwork! It would have been nice to share this amazing sight with a friend upon discovering it.

Steve comes out and marvels at the work with me.  He had arrived home minutes before I did.  He gets our camera and takes some photos.  We know that the light will be better in the morning, but we are afraid that the dog walking traffic will smudge the art.

I can't even imagine how all this artwork was done so quickly.  I didn't leave until ten to seven, and it is now only shortly after nine.  It is so amazing.  I can only imagine the joyous party that must have happened in my front yard while I was out.  Such beauty!  Such love.

Steve inserts all of the photos into my blog posts for me, and is away right now.  If you would like to see the chalk artwork, hopefully you can follow this link.  If not, check back in a few days, and it will be inserted into my blog.

Wednesday, August 13, 2014

Another Chemo Weekend Down

Saturday, July 19, 2014

I awaken and think about how my body is feeling.  I have a very faint pain in my lower abdomen.  When I put my hand over where I think the pain is, I realize it is the lower part of my colon. I imagine it is that mass, angrily trying to resist the chemo.  "Shrink!" the medicine orders the mass. "Never!" it shouts back, even as it contracts ever so slightly.  "You will shrink," I chime in, "and your friends in my liver too!"   I hope this is helping, I am willing it to.

After this conversation with my cancer, I decide to go for a bike ride.  I dress in running capris, tee shirt, sweat shirt and gloves.  It is in the sixty's this morning, an average temperature for this time of year according to the weather person.

Normally if I run, my rule is under forty eight, wear a jacket, under fifty eight, take a hoodie, anything over that and in time, I'll be warm.  As I ride down my hill, I wonder how I will make it through the fall.  I am already cold. Everyone else is wearing tank tops and shorts, and I am feeling pins and needles through my gloves.  Tomorrow I will try mittens over my gloves.

I would like to say the ride is easy, but it is not.  It takes me half an hour to circle the Boulevard once.
I am slow and tired, but at least my fingers have warmed up.  This is a good thing.  When I get back to my house, I do a few stretches.  They are not very good stretches, but it feels good to be doing them.

I garden until the sun is getting too strong.  I have had to change my gardening gloves twice, because the dew has made them damp and this makes my fingers hurt.  I have put on an extra pair of gloves  to keep them warm.

I need to clean up and change to go grocery shopping.  Just as I am beginning, I hear a knock on the door.  It is Steve's Dad and his wife Jan.  They have stopped by for a sneak attack. They visit with Kaileigh and I for a while, Alex is at work, and Steve is out cleaning up an empty lot in Elmwood, and then off to a peace rally.  We have a nice visit, and make tentative plans for dinner tomorrow.

Once I get cleaned and changed, Kaileigh and I head out to Stop and Shop.  Fortunately, today I have remembered to bring a sweatshirt as well as my gloves. I really need all this clothing in there today.  With the first piece of fruit I pick up, I need to cover my fingers.  It is nice to have Kaileigh along to be my hands today.  The cold items would be difficult to tolerate picking up, the frozen, impossible.

We head home and put away the groceries.  We have lunch and are about to head out again when Steven gets home.  He tells us about his day so far.  When he is done, we have just enough time to run out to Staples before his mother is going to stop by.

We get back just before our visitors.  Kaileigh sets to work making some spinach ricotta pie for dinner.  Steven and I have a nice visit with his Mom and Ed.  They have brought us a big container of chicken soup from the West Valley Inn, and a nice loaf of bread.  Everything smells delicious.

Ayla stops by after work with a chocolate mousse cake from Pastiche. She just misses her grandparents.

Kaileigh, Ayla and I head out again to pick up Alex, do a Whole Foods shop, and pick up the printing I have left at Staples.  By the time we get back, Dan, Dave and Walter are over to pick Steven up for their Saturday night get together.  We invite them to join us for dinner, and we share our soup, bread, pie and salad with them.  It is a nice gathering.

I cannot eat too much.  Even though I am not nauseous, thanks to my Psi bands, I am not very hungry.  I make myself eat a bowl of soup but have no problem eating the cake.

Sunday, July 20th

I get up and ride my bike again today.  It is a little warmer out than yesterday, but my fingers still get tingly.  I forgot my gloves, so I alternate hoodie pockets to keep my hands warm. I need to get better at remembering these things.  The ride seems easier today, I am hoping that by next week I can go around more than once.

I garden and get ready for church.  Kaileigh gets ready to back to New York.  She will be moving to Somerville, Massachusetts in a week and a half, so I won't see her again until the move. She needs to go home and help Josh pack up their apartment and tie up loose ends.  I give her a big hug before she leaves.
At church I help out with the childcare, and proudly wear my backpack.  It is out of the way, and the kids don't even seem to notice it.
When I get back home, I find that Steven has already warmed up some of the leftover soup for me for lunch.  Before I get to eat it, my chemo visiting nurse, Sandy, comes by around twelve thirty to unhook me.  She puts on a mask and gloves before she handles the pump with the empty medicine bag in it.  This is a little disconcerting.  Once she unbandages and unhooks me, everything goes into a medical hazard bag.  I need to return all of this to the hospital on my next visit for disposal.  This is a little disturbing.

Almost as soon as the chemo gets unhooked, I get tired.  I can't wait to take a nap.  I start to get crampy again.  I thought the cramps last time were from the miralax, but it turns out it was from the chemo.  We decide to cancel plans to meet with Steven's Dad for dinner.  I need to rest.

I go to sleep, and Steven goes to the laundromat.  When he gets back, I am still asleep. He puts all of the laundry away very quietly. When I wake up, I wonder who is creeping around the house.  I am glad to discover it is Steven.

Shortly after I wake up, there is a loud knock on my front door.  I open it to find one of my younger friends that live on my street standing there.  She is almost ten, and has been stopping by regularly with sweet gifts for me from her family; hand made cards, cookies, flowers.  Today she has brought me a box full of cherries, a chocolate bar and a card with a gift card in it to Whole Foods.  It is from her family and another who lives down the street.  It is so very nice, and my little friend is just adorable.  She makes me smile.   The cherries have arrived just in time.  I have been craving them, and though I have some in the fridge, I can't eat them until they get to room temperature.  These are plump, deep red and warm, just perfect.

Later in the day my friend Lisa stops by.  We have a very nice visit.  She brings me a water bottle filled with chocolate.  I am not sure which thing I needed more, besides the visit.  The chocolate is delicious, and the water bottle has foxes all over it that are wearing eyeglasses.  They remind me of Lisa's daughter, who it turns out, thought I needed this bottle.  Since I need to drink ten glasses of water a day, I think she was right.  I did need this bottle.  And the chocolate.

I take a shower this evening, and for the first time in weeks, I don't need to wrap anything in plastic.  The incision from my port is healed, and I can take my bag off before I shower and put a new one on after.  It seems like such a luxury, and really, I guess it is.  I get out of the shower feeling squeaky clean.  So nice!

Tuesday, August 12, 2014

Chemo Number Two

Friday, June 18, 2014

Steve, and I arrive at Fain 3 for eight forty this morning.  I am one of the first people to here for chemo and get my pick of the pods. I choose number two this morning.  It has a window and is just to the right of the nurses station.

Carolyn is my nurse today.  She takes my blood, and sends me off to be weighed, and have my vitals taken.  From there we go to Dr. Safran's exam room. When he comes in, he tells me all the nurses had told him I look good, and he enthusiastically agrees. 

We learn the results of my PET scan, it turns out there are a few spots on my left lung, but everything  looks fine.  He is not too concerned about the spots, he tells me the chemo will shrink them also, and that they are very faint on the scan, which is a good thing.  There is no other sign that the cancer has spread anywhere else, it is not in my lymph glands or my bones.  He seems very pleased.

I ask if it is alright to exercise, and he agrees it is a good idea.  He doesn't like the idea of running, but tells me biking or power walking are good.  He also thinks that if I lift weights, I shouldn't do more than fifteen pounds.  I wonder where this seemingly random number comes from, but I don't question it. I wonder if he doesn't like women runners with strong biceps.

Chemo goes well, it is four hours of sitting and getting meds through my port.  While I am here I pass the time talking to the nurses and Steve and typing my blog into a small Dell computer that Josh has found for me.  I am trying to get from June to the present.  I am happy to get all of today's post done, and start on tomorrow.  I am a few paragraphs in when there is a power glitch of some sort.  I loose all but one page of today's post. It is very frustrating.

Today I get to eat a hospital lunch during chemo.  This is good news, because I only had a quick piece of toast for breakfast, and I am hungry.

The lunch volunteer is an older woman with lots of energy.  She comes over to me around eleven, and tells me she will have a nice chicken rice soup from the cafeteria for lunch.  She asks if I would like some.  I tell her yes.

This woman is very funny.  When it is lunchtime, I hear her telling other people the sandwich options: egg salad, turkey or ham.  They can have chips if they like as well.  When she gets to me, she asks if I would like a sandwich, but doesn't tell me the options.  From the time I heard the word lunch though, I was hoping for an egg salad sandwich.  She gives me a pre made sandwich on white bread, and lets me have chips when I ask for them.  She doesn't offer me a drink, although she has them and has been offering them to other people.  I have water, so I don't mind.  She does tell me she will be back in a little while with the soup though. I am hungry and the sandwich tastes good.

Steve leaves for a few minutes to get some lunch.  They have food for the patients, but not their guests.  Next time we should plan ahead and bring a picnic lunch.

When my soup arrives it is too hot, so I let it cool a little before I sip it.  It is nice and warming.

After making the rounds, my food friend comes back. "Would you like some dessert?" she asks.  "I would love some," I say.  "How about some ice cream, I have coffee," she offers.  "Oh, coffee is good," I reply. "There is chocolate too," she says in a confidential tone.  I think for a few seconds.  "I'd love the chocolate," I say, and she goes off to eventually get my ice cream.

I hear her go into the pod next door, and offer some dessert to my neighbor.  She has pudding, fruit, cookies, ice cream.  "Actually," my neighbor says, "I would love some of that soup, if you still have it."  The food woman says it is all gone, but she has some in a can she would be happy to heat up.  My neighbor is disappointed.

I am not sure what she decided, because Steve came back in the middle of all this, and I was relating the story to him.  I never heard the food woman offer my neighbor any soup.  It is like she looks at you and decides what you need, and then offers you that, rather than tell you everything she has.  I think she saw me and and decided she needed to fatten me up. 

The meds go in fine, but make my head a little foggy.  It is a funny feeling, and you notice it is happening.  It is with the last of the meds that this feeling washes over me, and everything seems a little dimmer and slow.  Especially me.

I realize just before they give me my last med, the one that needs to go in my pump, that I have left it at home.  I call Kaileigh, who has been helping Sara today, and she brings it right over.  It is nap time, and most of the kids are asleep, so it is no problem for her to leave.

Carolyn gets me all hooked up to my pump, then sets me free.  Kaileigh drives me home in her car. It is just after two o'clock.  Three of the kids are awake when I walk in, and three are still asleep.

I sit and watch the kids who are awake finish a game with Sara.  I get the sleepers as they wake and snuggle until they are ready to play.  By three, everyone is awake, and it is time for snack.  We go into the kitchen to have popcicles and graham crackers.

I pour myself a big glass of cranberry juice from the fridge.  As I take a sip, I get an uncomfortable, crusty feeling in my throat from the cold.  It is amazing how fast that feeling comes on.  I just had ice cream with my lunch, and was fine.  The medicine that is in my pump gets to work fast.

We go outside to play for the rest of the day.  It is hot, which I think is nice, since I was chilly and wrapped in my shawl in the hospital.  The backpack which carries my pump makes my back sweat, but I am afraid that my pump is leaking.  Sara checks it for me and I am fine.

When everyone leaves, I ask if we can have Boston Market for dinner. I realize this is because I was describing my discharge day from the hospital for my blog.  It makes me think of the mashed potatoes and gravy, and I really want some.  Ayla has stopped by, and she and Sara decided to join us too.

I end up getting a vegetable plate, and take a few bites of Ayla's turkey.  I manage to eat the whole thing.  The chemo doesn't seem to be affecting my appetite this time.  Fortunately Ayla has brought a bottle of water with her, because all of the beverages in the restaurant are cold and I  can't drink them.

As we leave, I gather my bags.  I have my backpack and my knitting/diaper bag.  I get all the way home before I realize I have left my handbag at Boston Market. I have to go back and get it.  This is the second time I have done this, left my handbag somewhere on the first day of chemo.  I need to get this under control

We were planning on going to a meet and greet with Jorge Elorza this evening, but I feel too tired to go. I know there will be many of my friends there, but I sleep is what I really need, so instead I get ready for bed.

Monday, August 11, 2014

A Visit From the Plumber

Tuesday, July 15, 2014

Our plumber calls in the morning to let me know he will be able to come over and put my new faucet in. Ray has been our plumber for longer than we have lived in this house.  We met him when he did a repair in an apartment we lived in, and we thought he was amazing. We used to call him Super Mario after the video game, because he was like Mario, a super plumber, and always on the move.

Ray grew up in the same neighborhood I did, although we didn't know each other then. He installed our heating system when we first moved into the house we live in now, and through days of getting that job done, we talked about many things.  I learned that Ray is a perfectionist, and got his electrical license because he didn't like waiting around for the electrician to come before he could finish a job. This is just one of the many wonderful things about him.

I have always had children around when my house during the times when Ray needs to do repairs, and he has always been good with them. He takes time to talk to them, and is patient as they watch him in awe.  It is always exciting when he comes, and Ray has had many little fans at my daycare.

As time has gone on, he's always come right away in any emergency. Ray is patient about the unique aspects of working at my house.  He always tells me I'm like a little sister to him. We have a really sweet relationship.

I have been accumulating a list of things I need Ray to do. It seems silly to have him come over for one a small job.  This sink has been leaking since the spring, the light switch in Alex's room stopped working, the downstairs bathroom sink is loose, and since he is coming over anyway, there is this fan that I bought years ago that should have been put up in Alex's room, but I kept forgetting to ask him if he could put it up.   I'd also like to put one in Steve's office if he has the time.

We watch from the window as Ray pulls his big white truck up in front of the house.  This will be an exciting day.  I go outside to greet Ray, and he asks me how I have been.  He says, "Your looking a little thin, Kath, what's up?"  So I tell him, point blank.  "I have colon cancer."  I can't believe I said it just like that.  No beating around the bush. I am surprised at how casually I say this.

Ray almost falls over.  He can't believe it.  I feel bad that I have shaken him up so much.  After he recovers a bit, we head into the house and I show him the new faucet I have chosen, with his assistance.  I texted him a photo of it from Lowe's to be sure it was up to snuff.

The day is really warm, and being under the sink is not an easy job.  I watch him for a little while with the kids, and I can't imagine how he keeps his back in the crazy arched position he does as he works under the sink.  It looks painful.

He gets the faucet all set for me and says he'll come back on another day to get the other jobs.  It's hot, and he is a little tired.  He tells me he's going to the doctor's next week, and he's going to get a colonoscopy.  I am not sure if he already has appointments scheduled for these things, or if he is doing it because of my news, but I am glad he is going. The world would be a sorry place without the super plumber.

Thursday, July 17, 2014

This morning I took my sister Sara in for a colonoscopy.  We were there bright and early, six o'clock.

I made sure she was all settled before I headed back to my house to get ready for the kids.  The receptionist told me she would be ready by ten, and she would call me half an hour before Sara would be ready to go home. I was busy feeding some of the kids breakfast when the doctor's office called. Steven and Kaileigh took over so I could go.

When I got to the office, they let me into the recovery room so I could see Sara.  She was feeling a little discombobulated from the drugs they had given her, but she looked good.  We waited together to hear what Doctor Chin had to say. 

He told us that things had looked good, but that she had a small polyp that needed to be removed.  He didn't think it was cancerous, but they will biopsy it to be sure. I asked where it was located, and he told us it was in the sigmoid section of her colon.  This is the same place where the mass is located in my colon.  This just seemed too freaky.  I was so relieved Sara had made an appointment for a colonoscopy.  It seems like this might run in our family.

I drove Sara home so she could rest, and she spent most of the day sleeping off her anesthesia.  Steve helped by being Sara for the day.  I was relieved and grateful for the continued good health of my sister, and the willingness of my husband and children to help us through these complicated times.

Sunday, August 10, 2014

Port Weekend

I wake up and I am still sore.  It is painful to raise my arm, but if I lie still I am okay.  From upstairs I can smell the roses my friend Cathy left on my doorstep last night.  They are from her garden and fill the house with their lovely scent.  I breathe deep and let the scent sooth my spirit.

I dropped my friends David and Ellen at the airport on Friday morning, and now have their car for the next two weeks.   I had been planning on driving myself around today, but the car is a standard, and my right arm is sore, so I realize this will not be a good idea.  My friend Elizabeth was going to come for a visit this morning, so I ask her if we could do some errands while we visit.  We stop by Home Depot and Lowe's, so I can get a new faucet.  My old one has been leaking since the spring, and Ray, my super plumber, says he can't repair it any more.  I need to get a new one. I find one similar to my old one, but in a brushed aluminum finish.

We go to Stop and Shop together too, and wonder why we don't combine shopping and visiting more often.  It is nice. I make us some sandwiches for lunch, and find out that we both will eat a tomato in a sandwich that someone else makes for us, but if we make one for ourselves, we would rather eat it  plain.  Elizabeth and I have known each other since our children were young, and we never knew this about each other.  It makes me laugh to discover this after all these years.

Brett stops by to say hello.  These Saturday visits from friends have never been a common occurrence, but are becoming one.  We sit in the living room and have a nice, uninterrupted conversation.  Usually when she comes by there are several children here, sometimes even one of her own.  This is a nice chance to catch up with each other and what is going on in our lives.

I tell Brett of my impending dilemma.  I am about to run out of ostomy bags very soon, and I am not sure what I am going to do.  The company that is going to be sending them to me shipped them out on Thursday, and said it will take five to seven days to receive them.  I managed to get one at the hospital yesterday, but I doubt it is going to last until my order comes in.  Her husband Dave, is a doctor, so she thinks he might be able to get me one.  I am quite relieved.  My dwindling supply was making me very anxious.

Steve and I stop by a birthday celebration for my friend Anna later in the day.  There is pizza, salad and cake from Pastiche.  A lovely dinner, shared with friends. It turns out I am too full to eat the cake, so Anna sends some home with me. This might make a delicious breakfast in the morning.

Sunday, June 13

The thing I love about Sunday mornings in the summer, is that I can get up early, or even later than usual, and get some gardening done before the rest of the day gets going.  It gives me a real sense of accomplishment, even though there are always so many things to do, I could never get them all done in one day.  I trim, weed and water, taking care not to stress my right shoulder too much. It is still a little sore, so I want to go easy on it. By eight thirty, it is time to get ready for church.

The bandage from my port is a small white gauze rectangle .  I no longer need to wrap my arm for my picc line, but I have been instructed not to get my port bandage wet.  I am once again covering myself with saran wrap.  I choose some clothes, wearing what has become my new uniform; a swingy, short dress with capri leggings. I add a sweater to help hide the port bandage. 

At church, it is a light day for daycare, only three children.  It goes by quickly, and it is nice to see my Sunday friends.

It is sunny and warm today, and I won't have chemo until this Friday.  My tongue is not sore, the cold sensitivity is no longer affecting my throat, and it is almost all gone from my fingertips.  When Steve picks me up after church, we decide to go to Del's.

By the time we get home, I am starting to feel tired.  The port installation has knocked me back into a napping routine.  When I wake up I find a text from Elizabeth.  She has some biryani she would like to drop by for dinner.  What a lovely surprise!  She had told me she was going to make some for me soon, but I wasn't expecting it today.  Elizabeth is a wonderful cook, and makes the most delicious Indian food.  My whole family has grown up with and loves her cooking.  I text Ayla about my good fortune, and she makes plans to come by for dinner.

After we enjoy our biryani, Ayla takes me to Whole Foods to finish my shopping for the week. I run into some friends, Kate and Amy who check in with me to see how I am feeling.  Kate suggests some alternative therapies to me, to help with my chemo side effects.  I tell her I will consider them.

While Ayla and I are waiting for Alex to finish work, we hang out in the Whole Body Aisle to pass a few minutes. I find a scarf to cover my port bandages and cushion it from children resting their heads on my shoulder.  I also find something called Psi Bands.  They look like wrist watch bands with little knobs that press into the acupressure points on your wrists.  They claim to alleviate nausea associated with pregnancy, motion sickness, and chemotherapy.  I have some nausea pills that I can take, but they have side effects.  I decide to get the bands and see how they work after my next treatment.  Here is my first alternative treatment.
This note is from present time: I have asked Steve to post two photos of me he took at Del's on this day.  One I am really fine with, but the other I really don't like at all.  I wanted a photo of my port bandage, and this is the only one I have.  When I first saw this picture, I buried my head in Steven's shoulder.  I look so thin, and frail and old.  Maybe I look my age, my problem is I don't feel as old as I look.  Maybe it is because I am so thin at this point, and when I gain back some weight, some of these things will smooth out.  I don't believe this though.  I want to be the graceful woman who says, I am getting older, I have earned these lines on my face, and I am proud.  It turns out that that is not who I am though, and that I am a little vain, and it makes me sad.

In the end, I will say, so what, what does it matter? I don't have to look at this face all day. I have a magic mirror in my bathroom where these things don't show as well, and if I don't wear my glasses, I won't see them.  And if I smile, the world will smile with me... and my wrinkles won't show so much.

Saturday, August 9, 2014

A Port With No Storm

July 11, 2014

I wake up at five thirty to take a shower.  It is so complicated these days.  There is no jumping in for a quick shower. All of my medical appendages need to be kept dry, so they need to be wrapped in plastic wrap. Usually Steve helps wrap my arm, but I don't want to wake him so early.  I manage myself. 

Once I am all wrapped up and showered, unwrapping is another challenge. Everything that is taped on needs to be cut or peeled off without getting the thing you were protecting wet.  This seems like it would be easy, but the wrapping gets water caught in the curves and wrinkles, and if you are not careful, the water will spill onto those things you need to keep dry, like your picc line or your colostomy bag. A soggy bag is not pleasant.  Even though it is plastic, there are some that have a cloth like cover that takes a while to dry, and it feels cold and soggy against your skin.

By seven, both Steven and I are ready to head out to Miriam to get my port put in. We drive over in my sisters car. Alex will help out at daycare today.

I think that having such an early appointment will move things along more quickly, but it seems waiting is inevitable. The saline and antibiotic drips need to be ordered, and the surgical staff isn't even in yet.  While I am waiting, and hungry from not having eaten since dinner last night, the food cart is parked right outside my pod.  It is filled with bagels and bread, pudding, fruit and juices.  This is like some kind of mean joke.

My vitals are good this morning, no more fevers, they accept that my blood pressure is usually low.  None of the drama of my last visit.  Once I am hooked up to my drips, we are almost ready to roll. I  already had the port explained to me last time, the placement and the after care of it, so we don't have to go over it again. I meet another physician's assistant who will be helping out with the procedure, but immediately forget his name.

Finally, they take me in for my port.  It is the same room I was in for the picc line,  but I am facing a different direction.  The picc line was on my left, the port will be on my right side.  I meet the doctor, and all of his assistants.  Laura, the woman who inserted my picc line is there.  They quickly start prepping me for the operation, covering me with warm paper blankets, plastic sheets, places to stabilize my arms. I get hooked into the heart monitor and my head is covered with a tent, which means they put a paper sheet over it. I need to turn my head to the left and keep it there for this procedure.  They need  access to the picc line on my left arm for anesthesia.  Once they start it, the bit of ceiling I can see from beneath my tent begins to roll.  I close my eyes and for some reason dream I am weeding the garden.

I can hear the technicians and the doctor talking.  Someone asks how I am doing. I tell them I have been dreaming I was weeding. I can't believe my mind would choose to focus on such a mundane task. I ask how things are going. Laura tells me they are doing fine, and tells me where they are in the procedure. I can feel something going on around my collar bone, but no pain.  At some point I tell them I really want a sundae, and the conversation turns to ice cream.  I mention that the kids at daycare today are taking the bus to Ben and Jerry's this morning.  We all reveal our favorite B&J flavor.  We talk about ice cream stores in the area, and soon they are done.  My picc line is removed easily, and I am ready to go to recovery.

An assistant makes me one of those english muffins with butter and jelly again, served with a cranberry juice.  I gobble it down. There is no problem with my hunger today.

I get dressed and the tech offers me a ride to the door in a wheel chair.  I tell her I can walk, and she accompanies Steve and I to the big revolving door.  She wishes me luck in my future treatments, and off we go.  I  feel a little drunk from the anesthesia still, but holding Steve's hand, I can walk to the car with no problem.

I am still in the mood for an ice cream sundae, and although there are a few places we could go in our neighborhood, I am looking forward to a swiss chocolate almond sundae at Friendly's.  We get there before noon time, and the place is not very busy. I order and eat a half of a fishamajig sandwich, some cole slaw, and then manage to eat an entire three scoop sundae.  Steve is happy to see me eat.  I realize there is not a thing about my lunch that the nutritionist I spoke to yesterday would have recommended.

By the time I get home, I am dead tired.  I empty my bag, and crawl into bed for a two hour nap.  I awaken with a very sore shoulder.  Steve brings me some Tylenol and an ice bag.  If I don't move, it doesn't hurt too much.

For this meal, Steve makes a dinner the nutritionist would be proud of: fruit salad, green salad, sauteed zucchini and onion in California olive oil, olive bread and brie, and seasoned olive oil for dipping the bread.  My colon must be smiling.

Friday, August 8, 2014

Hiroshima and Nagasaki Memorial

Hello friends.  I was hoping to get my blog up tonight, but the post I want to write about, getting my port, is too long, so instead I will tell you about what I did this evening.

Steve was asked to film and photograph the Hiroshima and Nagasaki Memorial that was being held by the American Friends Service Committee at 7:30 this evening.  This is not what I would have thought of doing tonight, I was thinking about writing my blog, but Steve asked me to go, so I did.

I took the bus downtown to meet him after I was done with daycare, and we went to grab a bite to eat at Viva Mexico on Washington St.  We both had burritos and water, so it didn't cost much more that a meal from a fast food place, and was a little healthier.

From there, we walked to the little park that looks like the bow of a boat at the conflux of the two rivers near Steeple Street. We were there early, even before the organizer, so I helped set up when she arrived.  We put out twelve brown paper bag luminaries, six along each river.  Other people hung signs on the railings, asking people to remember the two bombings in Japan, sixty nine years ago Wednesday.

There were just a handful of people there, and I had the feeling that most of them had attended this memorial in years past.

We started off by meditating together.  It was a beautiful evening warm and clear, the almost full moon moving slowly across the twilight sky.   I was thinking about Steven, and another friend, who has never seen the man in the moon.  They know the moon so well, they see the craters and even know the names of them. Then, I thought of a friend who is from Japan, and the rice cake rabbit.  I have heard that when you are a child in Japan, you don't see the man in the moon, you see a rabbit.  I wondered if she sees a rabbit, and if her children, who were born in the United States will see a rabbit or a man in the moon.  I wondered how she feels about this holiday, and what she learned about the atomic bombs growing up, and how these things influenced her family, her life.  I always feel a little guilty when I tell her I am taking Victory Day off, because I wonder how she feels about this holiday. I have distance from the meaning of this holiday, like so many that we celebrate, I am just glad for an excuse to take a day off in August.  We never get to talk about how she might feel about this day.  Suddenly it all seems a little closer than it ever did before.

I grew up never knowing anyone from Japan.  I had a Japanese pen pal when I was in Jr. high,  but communication was difficult, so it didn't last long.  I had always been horrified by the bomb and it's aftermath, although growing up, it all seemed like such a distant thing.  I never grew up with stories from the war.  The closest thing I had was my Grandfather patroling the shores of the east coast, where people had to put black out curtains up, listening for the engines of bomber planes.  It never seemed very dangerous or real to me, no matter how exciting he tried to make it sound.

I can't even imagine the horror, the terror, or the fear that people felt that day. All the lives lost, the innocent people, who were just going about their everyday tasks, suddenly gone.  And for what? And all these years later, only a handful of people come out to remember this horrible thing that happened to the world.  And I sadly wonder if we learned anything from it at all. 

Thursday, August 7, 2014

July 10, 2014

July 10, 2014

James Ford, the minister from my church, came by to visit today.  We talked amongst the daycare turmoil of getting ready to go to the playground, (sunscreen everyone!) and the walk there.  It was a lovely visit, and I was glad to have the opportunity to share his company for this brief moment in time.  I rarely hear James on Sunday mornings because I am often in the kindergarten room teaching, which is my own choice.  I regret that I don't hear his sermons, since it is a way of getting to know him better. Aside from the time I get to ride in with James to Procom meetings, this is an opportunity to get to share some time with a person who is important to me.  I am glad for this.

The nutritionist from the hospital called today.  The nurses from my teaching session had asked her to call me with ideas on how to gain weight.  The only two things that I get out of our conversation are that I should eat less animal, and more vegetable, and that California Olive oil is good for my colon.  She was very against vegetable oil too.  I didn't find this information to be very helpful on the weight gaining front. 

I stop by stained glass class, but know that I am not going to be working on anything tonight.  I just want to say hello to my friends. I see the people at my stained glass class once a week if I am lucky.  There are always reasons that people have to miss class, but we are a very consistant group.  Christopher Foster lets us rent studio space once a week, where we can play with glass and create beautiful art.  He encourages us to come up with our own original projects, and helps us figure out how to accomplish them. It is nice to have a place to go where we can create, and leave this very messy, and often impractical to do at home hobby. 

Our group is small, with new people occasionally joining.  There is a core of people that stick with the craft, who have been going for years.  Tonight my friends Tony, Janet, Judy, Corin, Andrea, and Alyssa are all there.  We always support each other in getting projects done, lending encouragement and a critical eye where needed.  We celebrate accomplishments in class and life, and lend an ear or a hand when it is needed.  These friends have been sympathetic ears when I have stopped in to visit, even though each of these people has their own complicated life situations at home. I receive love and encouragement from these friends through emails, cards and their willingness to listen when I stop in. 

Before I leave, Janet gives me some alpaca wool she has spun for me.  I will knit some fingerless mittens from this soft, white wool, to help keep my fingers warm in the coming months. Janet works in oncology and emails me helpful information about my treatment.  She knows I will need these mittens due to the hand-foot syndrome I will probably experience. This is the name for the tingling I now get in my fingers as a side effect from some of the drugs. 

Yet again, I am literally wrapped in love from friends.