Monday, June 22, 2015

A Bad Idea

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  It is a leap back in time, and some of the information in about my treatment is now out of date, but I have left it as I had started it.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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, June 18, 2015

Chemo part 2, Number 8: Port Clogged continued

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

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

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

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

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

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


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

Way to make a person feel loved!

Monday, June 15, 2015

Chemo part 2, Number 8: Port Clogged

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

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

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

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

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

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

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

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

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

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