Wednesday, September 16, 2015

We Have a Winner?

I get the call on August 12th, two days after I find out that my cancer is in remission. I have been accepted into the study with the drug aflibercept, and I have been randomly chosen to be in the group that will be receiving the drug. I think this is good news?

There is a problem however: I am scheduled to start in one week, on August 19th, the same day Steven is scheduled to have a colonoscopy. I have been trying to get him to go in for this test since I was diagnosed with colon cancer. He is very nervous about it, not because of the procedure, but because it involves getting a needle. He is scheduled to go in around 11 o'clock, and the 1 o'clock appointment they want me to be in Fain 3 for is cutting things too close. Initially I ask if I can come in later, but am told it is a very busy day, and rescheduling will be difficult. I keep the appointment and think about it for a day. I call back and let them know the reason why that time slot will not work. It takes some time, and after a bit of discussion, I get rescheduled to a 3 o'clock appointment. I am a little annoyed, since I am volunteering for this, that it is so difficult to get some cooperation, but in the end, it all works out.

I need to go in to Fain 3 on Friday, to sign papers stating I want to be in this study, what to be expected, what is paid for by the study and what is not. Since I have already been given copies of these papers in advance, I know what they say. I read them again quickly before I initial them. I get to ask more questions, give a urine sample, some blood samples, and have an electrocardiogram.

I will be getting the infusion through my port, in the same area in Fain 3 where I got my chemo. I may even have Faye as my nurse.

Since I had my last infusion is July, I have been slowly coming around to feeling undrugged and more myself. I still have a small bit of neuropathy left over from my folfox treatments, but for the most part, I only notice it when I think about it. The pain I had been feeling in my legs when lying in bed has gradually faded away, and I don't need to have a pillow under my knees any longer in order to sleep. I can sleep on my side as much as I want to now, and snuggle into Steve when the nights are not too hot. This is something I have been missing a lot. Sometimes, I can't sleep any more during the night. It is like I slept so much when I was on chemo, that my body doesn't want to stay in bed a moment longer. I needed more and more sleep over the course of my chemo treatments, and it was really hard to get up some mornings. In the beginning of August, my son Alex and I started walking the Boulevard at 5:45 in the morning. The exercise has been helping me sleep, and I have been feeling stronger. Sometimes, we even run, but then I am so sore the next few days, I am not sure it is worth it. It feels nice to be able to run though, because I haven't been able to do it consistently for so long, if only I could get my bounce back.

As my awareness of time realigns with that of my drug free existence, there is so much that I have let slide in the last eighteen or so months. I wonder if I will ever get caught up. Not that I ever was, but when I open my eyes and look around, it's like Whoa! There is a lot of sliding that has been happening here!

Even though I have given serious thought and discussion to taking part in this study, I am nervous. There are so many unknowns, and, once again, I am going to start taking drugs which might not make me feel so great all the time. Am I crazy for doing this?

Monday, September 7, 2015

Victory Day!

August 10, 2015

Today is Victory Day in Rhode Island, our annual August day off.  I have enjoyed a weekend, and still have an extra day.  Of course, the list of things to do today is long, but first on my list is a visit to Fain 3 to return my chemo pump.  I was supposed to return it on my last visit in July, but forgot to bring it with me. Somehow, I haven't found the time to return it yet.

Steven walks over to the hospital with me, and we take the stairs up to the third floor. We pass by registration since I only want to return my pump, so there is no need to sign in.  I find my way to the nurses station, and it seems very quiet. A Monday holiday is not the busiest day for chemo.  The only person I see from my team is Jen, the rest of my team is off today.  I tell her I need to leave my pump.  She is happy to take it for me, and congratulates me on not needing it anymore.  We have a short discussion about my backpack, I ask her if she thinks anyone else might find it useful.  She says she will ask around and takes it.

On my way off the floor, I decide to make an appointment to see Dr. Safran, to find out if he has the results from my PET scan.  As I am sitting at the desk, who should be walking across the reception area, but Dr. S himself!  He smiles and gives me a hug.  "I was looking at you PET scan last night, and I have some good news for you," he says.  He looks around the reception area, and suggests we should set up an appointment right now, rather than talk about this in public. He tells Steven and I that he will see us in a few minutes, and heads off toward his office and the exam rooms.

We wait only a few minutes before being called in by Bess.  This is an official visit now, so I have to get weighed and have my temperature, blood pressure and survey about meds taken.  Once that is done, we are shown to one of the exam rooms to wait.  Things are quick and easy around here today,   Dr. Safran stops in to visit us almost right away.

The scan revealed that there is no cancer growing anywhere in my body.  It is what they call in complete remission.  This is such good news.  We talk about what this means and how I can keep things this way.  There are no guarantees with anything I am told.  Many people do everything seemingly right, and it still can still come back.  A diet low in animal flesh, and no charcoal grilled foods are two things that definitely seem to help.   There is a high likelihood of recurrence, but for the time being, everything is clear.  There is a small irregularity with my thyroid, but he doesn't think it looks like anything serious.

He asks me if I have thought about taking part in the aflibercept study, and I have.  I have decided  I would like to take part in it, if I qualify for it.  It will be my way of honoring all of those people who came before me, who helped research the drugs that I took to get me this far. It seems like the least I can do.

Dr. Safran brings me a folder full of information about the drug I may get, the frequency of administration, side effects, all of the usual stuff.  Two out of three people will be randomly chosen to take the drug, the third will be monitored closely.  He tells me he has one other person who is participating in the study and they did not get chosen to take the drug.  If I think of any questions, there is a phone number on the folder I can call.

I have just received the best possible news.  I made it through everything, and so far, it has worked.  On the way home Steve tells me how proud he is of me, for getting through everything, and for choosing to take part in the study.

The way I do mini golf.                               

When I get home, it is early in the afternoon.  Alex has the day off, and we decide we should go out for ice cream to celebrate.  We go to the Lincoln Creamery, where they have the best soft serve in RI.  I get a kid's chocolate and vanilla twist with chocolate jimmies.  The only thing to make this celebration better, would be a round of mini golf, which is a wish easily granted.  We head off for the Atlantic Golf Center in Attleboro. I don't win, I rarely do, but as of today, I have already won the hardest game I had to play.  Victory day indeed!

The way Alex and Steven do mini golf.  Maybe this is why I never win?

Monday, August 31, 2015

Pet Scan Misery

I have a new date for my PET scan, August 5th at 730 in the morning. There is only one PET scan machine in the area, located at RI hospital, so getting an appointment takes a little time. This is why it is so frustrating my last scan cancelled, you can not get a scan rescheduled in a few days. I suppose it has to do with the fact that insurance has to have the opportunity to tell you that the imaging request by your doctor is going to be rejected.

Two days before my PET scan, I get a letter from MedSolutions. This is the group Blue Cross uses to inform you that your doctor’s request for testing has been rejected. I wasn’t surprised to see this letter, I was surprised at the timing. Only two days before my appointment. It informs me that you have the right to contest the decision made by their doctors, and explains the process appeal. This involves
either me or my doctor contacting the company, and re submitting the request,and the reasons why their decision should be over ridden. This might not be such a big deal if they gave more notice.

In my case, Dr.Safran had anticipated this, and told me what would happen, but I wasn't kept me in the loop on this. All I knew was that I needed to start prepping for the test 24 hours before hand, and at this point I didn’t know for certain if I would be having the test or not.

I tried calling the doctor’s office to see whether they knew anything. I reached an answering machine, and left a message. I work all day, so I can’t be focusing on whether or not people are calling me back. At the end of the day, I haven’t heard anything, so I call the scheduling department to let the know I received a rejection letter. It turned out that there was a mediation scheduled for earlier that afternoon at 12:15, but scheduling hadn’t heard the results of it yet. My appointment was not yet cancelled, and so as far as they knew it was happening until they heard from the mediation.

Before you can have a PET scan, there is a days worth of prep that needs to be done. There is a low sugar, low carbohydrate diet that needs to be followed for 24 hours before. You are also instructed not to do any exercise for 24 hours before. It seems to be pretty important you know what is happening in advance of the scan, so you can be ready to have it done. The fact that no one had notified me about whether or not it was happening was very annoying because of this. At this point, where there was a question mark, I was committed to doing the prep, but had I not called on Monday night, I not have realized it might be happening.

On Tuesday, I got up early and went for a walk before the 24 hour time frame started. I forgot to check and see what the breakfast suggestion was, but my breakfast is cereal and fruit, so it fell within their guidelines. I called the hospital to see if they knew the results of the mediation. I called a different line this time, and got though to someone right away. When I told her my situation, she sighed. "No one called you," she asked? "You need to know." There was a resignation in her voice which indicated this was something that happened more often than not. She had me stay on the line and went to check and see. The mediation was successful, and yes, I would be having a PET scan in the morning.

Having the scan was unremarkable, I got up early to get to RI Hospital first thing in the morning. Steven was away so I went by myself. At this point, I know where to go and what to do, so it is not a big deal going alone. I managed to wear clothing with no metal on it, stretch pants, sports bra, cotton tee shirt.

I forgot how cold it is in the waiting room and in the PET scan lab though. I could have used a sweater. when I asked the tech why a you are not supposed to exercise for 24 hours before this test, she told me that the cancer cells like glucose, which they give you before the scan.  This is why the previous days diet is low sugar.  Muscles that have been working will absorb the glucose rapidly, and can give a false reading in your scan.

She commented on the fact that they needed to keep the room warmer because shivering could cause false readings. I wondered why they didn’t offer blankets, because I didn’t think it was that warm.

Since it was was early, it didn’t seem like all of the staff was in yet, so the man who was running the machine led me in through the big lead door, turned the big lock on the door, and got me settled on the machine. He did offer me a blanket, which I was so glad about, because it is even cooler where the big imaging machines are located.

I didn’t feel like listening to music, instead, I listened to the sound of the machine. I was happy to close my eyes and drift away from where I was. My body was present, there was no reason my mind had to be.

Once the test was over, that was it, I was free. One thing I forgot to mention about the PET scan, no contact with small children for the rest of the day. Had I remembered this from the last time, I would have asked to be scheduled later in the day. Now, I needed to stay away from my job for the rest of the day. It was still early, but I decided to try and visit my friend Carol, from Fain 3, who had surgery two days earlier. I managed to get to her room at 9 in the morning without anyone questioning why.

Our visit was bittersweet. Things didn’t go as she was expecting, so she was upset. I was upset as well. It is hard when you are going along fine with your own treatment, and you know someone who is having a more difficult time. There are no words that can change the wrongness, or the unfairness of the situation. All we could do is talk and hug, and hope with all that we are that things will go better, and all work out in the end. When I left from our visit, feeling very sad.

It was only ten in the morning at this point, and I had the whole day in front of me, but of course, no plan. I decided to take myself out to lunch, with my new laptop, and try to work on a new post. I am so new at trying to figure out how to work my laptop away from my home, it doesn’t go too well. Also, it is lunchtime, and I don’t want to take up table space for longer than I should. I don’t stay too long, but only have a few errands to run before I have run out of things to do.

It is only just noon by now, and I know the kids at my house should be eating their lunch. I decide to go back home sneak upstairs, hopefully unseen.

Even though I am as quiet as can be walking into the house, as soon as I hit the first stair all the kids seated at the kitchen table turn and call my name. I wave as I run up the stairs. I feel like a teenager sneaking into the house with some kind of contraband I don’t want my parents to see.  I spend the rest of the day reading, and being quiet.

This is the card you get when they use nuclear medicine on you.  It is like a get out of jail free card. If you should set off an alarm at a post office or airport after you have undergone a PET scan, you can show them this card, to show that you are legitimately radioactive. My kids were disappointed I wouldn't go to the post office to try this out.

Sunday, August 23, 2015

And the Answer is. . .

July 14, 2015

My appointment with Dr. Safran is at 12:40pm today.  This is not the best time for me, it is right at the start of baby nap time.  I call in Allie to help Sara while I am out, help get the kids through lunch and walk over to Fain 3.

I am called in soon after I arrive, but then have to wait in the exam room for a while.  I have forgotten to grab something to do on the way out the door, so I am left to empty texts off of my dumbphone until there is nothing else to do.  This was really not a good day to forget to bring something with me.  Anticipation is worse when there is nothing to distract you from it.

Finally, Dr. S. comes in.  He is very matter of fact, which indicates to me that something is not right.  He tells me that the scan seems good, but it doesn't tell us what we need to know, which is that the cancer growing in my liver is in remission.  The radiologist report dances around the subject a little, describing the nodules which were once the cancer in my liver as small, and talks about the scarring left behind from shrunken tumors.  It never comes out and says that the cancer is in remission, and this is what we need to know.

This is very disappointing.

He tells me he will set up another PET scan appointment for me, but initially, I should expect to be rejected once again . Since it has already been rejected once before, it will be subject to a peer review, which will probably be with the head oncologist at Woman and Infant's hospital.

He tells me a little more about the study that he is doing with a drug called ziv-aflibercept.  This is an FDA approved drug which has been used in chemotherapy treatments to help shrink tumors when oxaliplatin is not effective.  Dr. Safran is interested in seeing if this drug can be used as an adjuvant therapy.  This is in anticipation of recurrence, which for my specific type of cancer and the stage it reached before it was caught, is very high. 

He tells me we can talk more about it at my next appointment, if my cancer is in fact in remission, and I would like to apply to take part in the study.

I stop by the treatment room to see if Faye is on, but she is off today.

I am pretty disappointed as I leave my appointment. 

The scheduling nurse calls me when I get home from Fain 3.  The next appointment available for a PET scan is on July 29th at 7:30am.  I take the spot.

Friday, August 21, 2015

My Second MRI

My first MRI experience was back in October of last year. It was just past the half way point in my folfox treatment, on a rainy night after work. Everything was so new and interesting.

It is early, Sunday morning, July 12. I have an appointment for an MRI at 8:30am, but I'm instructed to arrive a half an hour early to register. I wake up early feeling anxious. I can't eat until after my MRI, so once I am dressed, I want to go. Steve and I walk over to the Miriam Hospital MRI department on a sunny, humid, summer's morning. It is located around the back of the hospital, in the basement, through doors that warn of magnets in use.

We arrive ten minutes early, before there is a receptionist, so we are sent over to admitting in the main building. We walk around the outside of the building and enter through the main entrance to find there is no receptionist in this area either. The MRI tech told us we may not find anyone there, and instructed us to dial the operator on the phone that would be in the reception area. We are told someone will be right over. A woman greets us several minutes later.  She has come over from emergency admitting to check us in. What a crazy system.

Once I am checked in and wearing my hospital bracelet, Steven and I follow the underground maze beneath the hospital back to the MRI department. By the time we get there, the admitting nurse has arrived. Sigh. She instructs me to change into a hospital johnny in a dressing room that is located through a door behind the admitting station. Everything off but underwear. 

There is a locker where I can leave my clothes in the changing room, but I leave my bag and phone with Steven, who waits in the small waiting area. I wander out to hand him these things while I am in my johnny, like this is perfectly normal behavior. Maybe I should have just rolled out of bed and wandered over dressed in my nightgown.

Once the techs are ready for me, I am called back to the room where the MRI machine is. Sheets are laid on the cold plastic bed, with a small pillow for my head and one to go beneath my knees. I will be injected with a contrast dye, so I am given an IV drip in my left arm. They do a test, and it feels like there is cool liquid running down the inside of my arm. It turns out to be a reaction to the fluid, there is not really anything on the outside of my arm, it only feels that way as it flows into my veins.

There is a panic button placed in my right hand, in case I need them to stop the machine at any time. I worry that I might press the button by mistake while I am laying inside the machine. I am given headphones to wear, so the tech can tell me when to breathe and when to hold my breath and be still. They will also protect my ears from the loud sounds the magnets produce while making the images. There are speakers in the headphones to play music to take my mind off of the noise in the machine. I tell the tech he can choose the music for me, but as I slide into the machine I have a moment of panic thinking he may pick something I don't like.  He has chosen Crosby, Stills, and Nash. I breath a sigh of relief, this is something I can listen to.  I focus on the words and the harmonies. The tech asks if I am okay, and tells me he is ready to start the imaging.

The first time I had an MRI, everything was so interesting. I was focused on the sounds and the sensations around me, it was all so new. Even though this is only my second MRI, it now one of several different scans I have had, and not so exciting. I only want to get through it, to move on to the next thing. I lie there, eyes closed, listening to the music, breathing in, holding my breath when instructed to, and breathing out again. I try not to think about time, about the space, about the loud noises clanking around me. It seems to go much faster than the first time.

It is my hope, and my expectation that this scan will show that I have no growing cancer in my body.  I do not know how there can be, I have followed all the steps and done all of the treatments.Well, almost all of the treatments.

I will find out in two days what the scan reveals.

When I get home, even though it is early still, I am so tired.  It could be that my weekend is still catching up with me, or that the MRI makes me tired.  Both of these things could be the cause.  In any case, it is time for another nap. 

Thursday, August 20, 2015

Wedding Weekend Continued...

Steve and I finally prepare to leave the wedding. The last song has been played, the remaining books perused, good wishes and hugs have been bestowed upon the bride and groom. We head out into the night, and I gingerly toddle back to our hotel.  It was only a short, ten minute walk a few hours ago, but that was before dancing like there was no tomorrow.  Now, it is a long fifteen minutes back.

 I turn out the light and we settle into bed.  I am too wound up to sleep, but I can tell by the deep rhythmic breathing coming from beside me, that Steven has fallen asleep right away.  I didn't leave a light on to read by, and I don't want to disturb Steven, so I lie awake and wait.  And wait.  Sleep doesn't want to come.  The aching in my legs grows, but I don't want to get out of bed to search for my stash of acetaminophen.  I wonder if these achy bones are from lack of use, or from the chemo that is still making it's way out of my body.

I do fall asleep at some point, because I wake up to the dim light leaking in from around the curtains.  I am so sore.  I feel like I have been doing cross fit all night.  If you don't know about Cross Fit, it is this crazy, intense exercise regimen.  When you start cross fit, you are always sore, probably because you are out of shape.  As you continue to do cross fit, you are always sore, because once you are fit enough to do something, you need to increase the workout, to get stronger.  At some point I started to wonder, how strong do I really need to be?  Don't get me wrong, strong is good.  Sore all the time, not so good.

Before Steve and I check out of our room, I stop by to say goodbye and thank you to Julie and David.  I also need to drop off a square for the quilt being made for the bride and groom.  They were supposed to be put in a book during the wedding, and then presented as a gift during the evening.  I left mine sitting on the bed when we left our room.  It is shaped like the United States, with hearts embroidered in California, where Helen and Ben met, and in Boston where they married.  There are other family events today, so Julie is going to bring my square to the bride's sister who is making the quilt.  Forgetting the square gives me another opportunity to see Julie and David, so it hasn't worked out too badly for me.

We had been invited to the family gatherings today, which I started to regret, but this morning I am glad that I passed on the offer.  I am feeling so achy and tired.  I hope this is just a temporary state of being, and that it passes soon. 

Steve and I head out for the T, which is what the subway in Massachusetts is called.  We take the red line directly to South Station, where we transfer to a train which will take us into Providence.  Once upon a time, before I woke up this morning, we had talked about stopping by a museum.  When I awoke so sore, I knew we were going straight home.  Even though we had traveled lightly, and left anything difficult to carry in a backpack behind in our hotel room.  The hangers were nice, but definitely easier to travel without. Our packs were still awkward and heavy.  I couldn't even imagine shlepping them around the city. 

We arrived at the station with just enough time to grab a quick breakfast before boarding our train.  It was air conditioned and not crowded, and Steven and I passed the time talking and watching the scenery pass by out the window.  The train really is such a nice way to travel. I need to use it to go visit Kaileigh more often.

From the train station, it is only a short walk to the bus stop, and the street where we live is right off of the bus line.  This is very convenient. 

By the time we get home, I am of course, exhausted, and ready for a nap. 

Monday, August 17, 2015

Wedding Weekend July 10 - 12

I have been looking forward to this weekend for months. My friend Julie's son is getting married on Friday night at the Boston Museum of Science, and Steven and I have been invited.

The wedding is at six, so I leave work early in order to make it on time. We were going to take the train, but Julie and her husband David have an early afternoon appointment in Providence and have offered to pick us up before heading back to Boston. Although we leave just before two o'clock, we run into traffic half an hour from our destination. This causes a little distress, since we aren't close to the city yet, but there doesn't seem to be a faster route. We arrive twenty minutes later than we thought we would.

En route, Julie's phone rings. It is the photographer trying to clarify last minute details. Quickly and calmly, Julie helps resolve the photographers' scheduling difficulties, and figures out when and where people and props need to be before we reach our hotel.  We offer to help with odds and ends still needing to be done, but Julie and David have things under control, and insist we go to the hotel and get settled before the wedding.

We were planning on staying overnight at my daughter's apartment just outside of Boston, but have been offered a room in the hotel where Julie and her family are staying. After checking in, we drop off our stuff and head off to find the museum. It is a short walk from the hotel, but I want to make a test run before hand to see how long it takes. I am not as fast as I used to be, and I have new shoes for the event. I want to see what I am in for. It turns out not to be too far, close to ten minutes walking time. There is no way I could make it in the heels I brought though, so I plan on wearing other shoes to walk over to the wedding.

Kaileigh meets us at the science museum. She is going to go back to the hotel with us to change. Her partner Josh, is the groom's brother, and is the best man in the wedding. He will be busy with photos and helping to set up, so this works easiest for her. It allows us extra time with my daughter, which is always makes me happy.  As we walk out out of the museum and into the heat of the day, I am glad we have someplace close by to get clean and changed before the ceremony.

When we return to the museum, there is a change in the atmosphere of the lobby.  It has gone from a bustling interchange of casually dressed couples, families and folks wondering around, to a gathering place of people dressed in their best.  The crowd grows as we wait with anticipation to be directed to where the wedding ceremony will take place. Before long, we are led down a stairway and out to a beautiful garden area behind the museum on the Charles River.  Under a Victorian style pavilion we pass beneath a colorful hand painted chuppa to find rows of white chairs arranged around a center aisle.  Julie has reserved some seats for us with a good view, not too far back from the front.

As the sun is lowering in the sky, the wedding ceremony begins.

Both families have a love of choral music, and a group of close friends and family have become a small choir for the ceremony.  The bride's sister, who is the maid of honor, is also the choral director.  From the processional, where the bride preceded the groom down the aisle, to the to the recessional,  where the gathered friends and family sang the words to Daisy Bell, (Daisy, Daisy give me your answer true!) the ceremony is full of beauty, with heartfelt words of wisdom, harmonious voices and music.  There is so much love under the pavillion, between the bride, groom, friends and family, it  inspires the setting sun to shine ever more brightly.  There are bits of sweet sentiment and humor sprinkled generously throughout the ceremony, and it fills my heart with hope for the wedded couple that all of these things overflow into their everyday life.

As the sun set lower on the Charles River, we gathered for appetizers and refreshments while the bridal party photos were taken.  The lighting could not have been more beautiful.

The reception was held under a big tent just past the pavilion where the ceremony took place.  The decor was simple, white table cloths, red napkins and Erlenmeyer flasks in the center of each table filled with daisies. The tables were arranged by genres of books, which Ben and Helen had spent months carefully choosing.  The idea was that you would choose a book you liked, and sit at that table.  Steve chose a book from the philosophy table, and we sat at the non fiction table where the book I wanted was. 

At the end of the night we would take the books home as a memento of the wedding. I can only imagine how much fun it must have been to collect all of those books.  So much thought went into each one of them, with the hope it would make a someone happy to find it.  There were so many of them, that when the festivities were over, some guests could be seem leaving with arms full of books!

The food was delicious.  It was served buffet style, and included selections for vegetarians and carnivores.  Everything about this wedding was so thoughtful.

I found it so sweet when the bride and groom quietly went off to enjoy their first dance together.  Neither of them are people who thrive on the spotlight, so it was fitting they should dance to celebrate their union at a time that felt right for them.  I had noticed what was happening, so Steve and I wandered over to watch them dance.  I wasn't familiar with the tune, but it was old timey and lovely.  Once they were through, they calmly and respectfully cut the cake, with no frosting antics.

After people finished eating and socializing, after toasts were made, and cake enjoyed, the group dancing began.  It was during this time I realized the oldies they were playing were songs from my youth, which seemed to me to be a milestone.  Of course there were older songs I had considered oldies in my youth, but added to this list was music by Jackson 5, Bay City Rollers, and Simon and Garfunkel.  I found it fun that the younger crowd all seemed to know and love these songs.  Another sign of my aging; new music I had never heard before.  I didn't know I had fallen so far out of the loop of what younger people listened to.  It was stunning.  It didn't matter though, Steve, Kaileigh, Josh and I all danced the night away, only breaking for the few songs we thought undanceable.  As the night wore on, it became obvious to me how little dancing I have done.  Undeterred, I boogied on.  There was a Polish wedding processional dance, which culminated in a long bridge of people holding their hands up, while people from the line behind passed through.  You could lower your arms to capture those you wanted to give a little extra love to.  This honored the bride's cultural background.  To honor the groom's, we did the Horah, where we lifted the bridal couple up in chairs above the crowd, rising higher and lower with whoops from the crowd.  The mother's were also lifted in celebration, laughing and smiling though each lift of their chair.

It was a night filled with laughter and happiness.

Sunday, August 16, 2015

Taking A Break

The past month has been a good one. I have some posts to write, but sometimes it is hard. Hard to find the words, hard to find the time, hard to think of all that I have been going through.

I want everyone to know that I am doing very well though, and apologize for not writing sooner. I have been through some interesting things, which I will write about. This weekend however, August, 15th through the 17th, I am getting away.

My daycare families have insisted on it.

The all pitched in, and sent me to a little cottage in Sandwich, Massachusetts. Yesterday, Saturday, Steven and I set off in my friend Brett's car. We left Providence at eleven, and took six hours to arrive at a destination that we could have driven to directly in less than and hour.

We decided to drive Route 6 to get here, and stop at every mini golf we passed. The mini golf mania started last week when I decided I would play all of the mini golf games that we located on Route 6 in Seekonk, which is not far from where I live. For some reason, there are three of them in a very close proximity to each other, and I had only been to one.

Last Friday night, my son Alex and I played two courses, and on Saturday, Steven, Ayla, Chauncey and I played the remaining Route 6 course, and then to a short detour off of 6 to play Monster Mini Golf, which is done glowing under black light, complete with scary monsters and sounds.

Monday was a Rhode Island state holiday, and I had received some good news from Dr. S, (which I will tell you about later), so Steven, Alex and I celebrated by getting and ice cream cone, and yet another round of mini golf, this time in Attleboro Massachusetts.

Since I knew we would be heading to what must be the mini golf center of Massachusetts, if not the world, I put the challenge out there to Steven, that we should try and play every one we pass. Being a good sport, he is going along with this challenge. Of course, he wins almost every game, but I don't mind. I think I might be getting better.

This morning, we are heading out for a whale watch. I am very excited. If we don't see any whales, there is a chance we may see a great white shark. Thirteen of them have been spotted around the cape recently. Did I mention we were leaving out of Hyannis? Wish us luck.

Thursday, July 23, 2015

Hibernation: June 26th to the 29th

It has taken me nine treatments to figure out the best way to deal with folfuri is to sleep through it.  Not because I feel tired, but because it feels better. My body must be tired, because I close my eyes and fall asleep, but I don't feel sleepy.  I just feel major league crappy.  I don't need medicine, I don't need food, all I need is sleep.  Sleep four hours, get up for two, sleep some more.  The world can march on, just let me sleep.  I can sleep all day, and then sleep all night.  How is this even possible?  I can get through this because on Monday I will feel better.  Only this Monday, I don't.  I get up to start my day, but after a very short time, it is apparent this is not going to work.  I need more sleep.  I call in help, and go back to bed.  Finally, by Tuesday morning I begin the slow ascent back to feeling unchemoed.

On Friday, during my chemo session, the medical imaging department left a message on my phone.  It is very vague, saying only that my doctor has ordered a test for me, and I need to call back to make an appointment.  I don't hear this message until Tuesday, because I have been sleeping all weekend.  I don't know what kind of test my doctor has scheduled, because we didn't talk about any new tests.  I know I have my pet scan scheduled for Thursday, but I wasn't aware of any new tests.

I call back and reach the automated operating system.  It is very unhelpful.  It expects me to know what kind of test I am calling to schedule, but the person who left me a message didn't say what type of test I am supposed to be scheduling.  I press the number for the pet scan department hoping they can help me.  It turns out Blue Cross has refused to pay for my pet scan, so my Thursday appointment is cancelled.    They will let me have an MRI however, so I schedule one for Sunday, July 12, at 8am.  My appointment with Dr. Safran is on the 14th, so there will be time for him to get the results before I see him.

I put all of this out of my mind and get ready to enjoy the 4th of July weekend. 

Steve and I need to pick my vacuum up in Warwick right after I get done working on Friday.  It has been in the repair shop for three weeks and it is finally done.  If I don't pick it up, I won't be able to get it for another week, and I really can't wait that long.  With a sandbox in the backyard and lots of sandy feet and shoes in my house, it has been a long three weeks.

Since we were in Warwick, and I was feeling pretty good, but chemo hungry, meaning I needed food right away or I'd soon feel too sick to eat, I suggest we try Iggy's.   I'll admit to feeling kind of brave about this, given my last experience there, but I don't want to be afraid to eat someplace my family loves.  It turns out most of Warwick goes to Iggy's on the 3rd of July.  There are fireworks on the beach and people start to get there well before the sun goes down.  In the end we were brave to go there for a completely different reason.  The line to order stretched down the sidewalk past the playground and toward the beach. Having stood in this line before, we knew that it would go quickly, and decided to go for it. Steve parked the car while I got in line.  This line leads to a walk up window,  where you order, get a number and wait for your order.  Iggy's has been on Oakland beach for years, and they have a very good system.  It moves quickly, and since you are out on the sidewalk, there is plenty to see and hear, and before you know it, you have your food.

I was just getting to the edge of where hungry turns to sick when I was next up to to order.  When they called me up, a man stepped in front of me from somewhere else.  I politely told him where the end of the line was.  He looked back in amazement, as if noticing this huge line for the first time.  As he shrugged his shoulders and walked off, I laughed at his audacity, and my own as well.  Don't mess with someone who is chemo hungry!

Steve and I walked back to the car and ate our dinner.  It was the easiest and warmest place to eat.  And the chowder was everything I had hoped it would be. 

Saturday, July 18, 2015

The Last Chemo

June 26, 2015

This is the day of my last chemo session.

I am so ready for this day, although it is hard to get ready to go in for my treatment.  There is this huge psychological piece of chemo that is really difficult for me to deal with. There are sounds and smells, even thoughts that go along with all of this that make it hard for me to get to where I need to be; at the Miriam, Fain 3 at 8:00am this morning.  I fight all of the fear inside my body, and get myself there on time.  This is the last one, this is the last one, has become the mantra playing in my head.

I walk myself over and manage to get in on time.  I had wanted to bring the nurses a treat, but didn't leave early enough to do so.  Another time, I think and then remind myself that this is the last one. I don't need to come back for more of this.  What a strange thought.  For the past YEAR, as it is two weeks shy of when I started my first treatment, I have been coming to this place every other Friday, with only a short break for my ostomy reconnection.  It has been a time of reflection, discovery, and  focus.

 I have been with the same group of nurses for this entire time, with only a few exceptions. One nurse, Cassie, left for another position in the hospital.  The other nurses on my team, Carolyn, Jenn, Tracy and Faye, have been a constant source of support, besides being there to make sure I get the drugs I need.  They have all listened to me explain and complain about how I have been feeling.  They have adjusted the IV pumps that push the medicine into me, and brought me warm blankets when I was cold.  They are patient, and incredibly kind. It makes me somewhat sad to be saying goodbye to them, even though I can stop by to see them if I need to.  I know this is probably unlikely though.

I am disappointed Faye is not on today.  She has been my main nurse, from day one.  Faye has taken good care of me, we have shared bits and pieces of our year together, and I will miss hearing about what she has been up to and how her family is doing.  I am Tracy's patient today.   When I choose my pod, she tells me she will make sure Carol knows where I am, and saves the one next door for her.

There is a long wait for me to go in to get my vitals taken this morning.  Even though I was one of the first people in, through some mix up, I wait for a long time.  I don't really mind.  I don't have anywhere else to be, and my friend Nancy is coming to sit with me today.  She arrives before I am called out of the waiting area, so she can accompany me in to the exam room and meet Dr. Safran.  He congratulates me on making it this far.  It turns out that most people aren't able to tolerate so many treatments.  He is happy that I look good and that my new goal is to getting strong again. Ever since the snowy winter, I have been making little effort to exercise.  I have this funny shaped belly now that I am not happy about, so I am going to try and exercise it away.  At least I think I am.

During this visit, I ask him what the chances are of my cancer coming back are.  I am somewhat taken aback when he tells me it is around eighty percent.  I am disappointed that it is such a high number.  He tells me that it is really difficult to know without a doubt if we have defeated every cancer cell. I am scheduled for a pet scan on July 2nd, so if I call the next day, he will be able to tell me how things look, if the cancer is in remission or not.  I also have an appointment for the following Tuesday to go over our new plan.

I ask if there is anything I should be doing to keep the cancer at bay. There are so many unknowns with this disease, but two things that seem to be consistently linked are the consumption of red meat, and charbroiled foods.

When I get back to my pod, Carol is in her chair next door.  I pull the dividing wall back to open up our two pods so we can talk.  I introduce her to my friend Nancy, and we sit all sit and talk until it is time to get hooked up.  At one point the lunch Lenore, the lunch lady, and an new assistant, come by to offer us some food.   Of course the thought of it makes my stomach lurch, but when I realize I can take mine and give it to Nancy, I quickly ask for a turkey sandwich and then wait until they leave to hand it over.  We all look so cozy there, like we are having a little party, that we need to remind the lunch ladies that Carol is a patient deserving of lunch too.  I guess this is a testament to how good we both look!

As I sit in my chair, I start to feel dopey and not very well.  It is so good to have the distraction of a friend to help me get through this.  We talk and I try to ignore how rotten I am feeling.  In what has got to be one of the best cases of good timing ever, Steve walks in just as I am getting ready to leave. I give Carol a hug and wish her well.  We have exchanged email and phone info so we can keep in touch.  I give each of my nurses each a hug too.  I know that at some point I will probably see them again, since I will have visits with Dr. Safran, and then possibly other kinds of treatments, but this is the last chemo, hopefully ever.

Nancy has driven over, so she gives Steve and I a ride back to our house, where I can't get to bed fast enough.  As I lay in my bed with a pillow covering my eyes, I see lines like cross hatching.  At one point I feel as if I am seeing all of the lines around the iris of my eyes, when it occurs to me that I am probably having a migraine.  My head doesn't hurt, but my stomach feels awful.  I have decided not to take the nausea med this time, because the last time I opened the bottle, the smell of it made me feel like throwing up.  I wasn't feeling any better or worse than I had when I was taking it.  The only thing that would make me feel better for sure, is a good long nap.

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. 

Sunday, May 24, 2015

A Fire in My Belly

According to the Free Dictionary, "if you have fire in your belly, you are ready to fight with energy and determination for what you believe is right."   He will approach the committee with plenty of fire in his belly.

My fire is much different.  The fire in my belly starts at the tip of my tongue and reaches down my throat until it engulfs my belly.  It is not quite sore, maybe raw is a better way of describing it.  It starts soon after chemo, and lasts until sometime later the following week, but I have the sneaking suspicion it is going to lengthen it's endurance as my treatments continue.  It rages on like a forest fire out of control, unpredictable, calm one moment, flaring up with ferocity the next.  Sometimes it is accompanied by nausea, other times it simmers on alone.  

Contrary to what you would think, my body at this times craves a solution to this soreness.  It thinks that there is some food that will make it calmer, make it go away.  I go in search of what that could possibly be.  At times it is simply food it needs, and it is not particular: a bowl of cereal, a piece of fruit, and at once I am fine.  Other times, it is angrier, like a volcano waiting to errupt, growing worse, until I make the proper offering.  

Water may be the thing it needs, I am supposed to drink much more than I can in one day.  It doesn't feel good going down though.  Ice cream is wonderful, but it is not something that should be consumed all day, and very difficult to sneak eat when there are several small children about.  Milk can work, peppermint patties are soothing too. Ginger can work, but the flavor is too strong some days, I can't stomach it.

Having this feeling is eye opening.  In the past, I have eaten or not eaten when I was hungry.  The feeling would pass, I would be fine.  This is a hunger that demands attention.  If it isn't addressed asap, it grows worse, it won't go away.  After spending so much time sleeping, I spend too much time trying to figure out what the next offering to my belly will be.  This of course has it's consequences.  

Since my colon was reconnected, my belly shape is very different than it was before.  Once it was a smooth, soft, gently rounded shape.  Now it is that of a muffin top, even sans pants.  This may even out in the future, but for now, it is the shape of me.  

When my throat is raw, my digestion is sloe.  This makes my gut protrude.  The top of my muffin pushs out from my clothing with gusto.  Some days I think I have gained so much weight because my belly sticks out so much, but the scale tells me it's not so.  It seems like everything is stuck in the upper part of my gut, just hanging out for a while.  Within a few days the bulge will subside, but in the meantime there is little I can do.  It seems to be one of the side effects of my situation.

By Tuesday evening, I am tired of this.  By most Tuesday evenings after my treatment, I find I am tired of many things.  This folfuri seems to fulfill it's name on Tuesdays.  I feel grouchy and mean.  This week I decide I do not want to do chemo anymore.  I want to tell Dr. Safran that I am through, that this seems to have worked just fine and I want to stop.  I had enough of feeling tired and feeling bad.  Steven asks me if I really think this is a good idea and I tell him yes.  He asks me if I really want to tell Dr. Safran this, and I say I do.  I know this is not true, that I want to do the thing that will have the best results, but on Tuesday, I just need to complain. 

On Wednesday, I tell my daughters the same thing.  

I have taken a nap after work, from five thirty until almost seven, so I can go out and do a trivia night with them.  This is my one night out this week.  When I wake up, I have that fire in my belly even though I have eaten dinner. There is little to eat at the bar we are at, except for chips. I order a cranberry juice and decide I need to have corn chips.  Not the healthiest choice, but they calm the fire.  

As I eat my snack seeking comfort, I realize how hard it must be for people who want to stop eating but can't.  I wonder what fires they might have in their bellies.  My eyes have been opened to how your body can keep asking for more, trying to quench some unrelenting, insatiable fire that rages on. In your mind, you know the corn chips are not the answer, but your belly doesn't care, because the temporary solution is what it needs.  The chips are the answer to it's nagging prayer.

When we are fully engage in our trivia game, I feel fine.  It is a great night.  Our team consists of my daughters, their partners, Steven and me.  We are team Toaster Strudel.  It is the rare trivia night where I feel like I have made a real contribution to the team.  Note here:  I am terrible at trivia.  We manage to take a lead early, but end up taking second place.  It's okay though, we have had a great time.  The host asks us to come back because we were so much fun.  

The team we lose to is called Hitchcock's Ass Cancer.  What a coincidence that I should lose to a team with this name.  Maybe I should reconsider my Tuesday night declaration.

By the time we get home, my stomach is raw again.  This time I give it sleep.

Thursday, I wake up and look at my tongue.  It's nice and pink.  No nausea, no fire, it's going to be a good day.  

As if Dr. Safran has been hearing my thoughts, I get a message on my phone later in the day.  He will be away next Friday, I will see Megan instead.  I will need to make another appointment for a different day if I want to complain at the doctor.  I realize this is all I really want to do, so I decide against it.  I will go and get my treatment.  I will do what is recommended to keep my cancer from coming back.   I've made it through six treatments, I can make it through six more. 

I will approach my treatment with a fire in my belly.  Hmm... but no pb&j sandwiches.


Saturday, May 23, 2015

Sleepy Weekend

 Last week, after I wrote, I slept well.  I have realized that if I sleep the nausea goes away, so I look forward to it.  When I am awake, the nausea medicine helps, along with peppermint patties.  They have become my new digestive aid.  I have tried ginger which also works, but the peppermint cools and soothes my tongue and esophagus as it slides down, and feels so good.

Saturday was supposed to be a busy day, but as with my weekdays, I have learned that I need to pace myself.  Hanging out at a kids party in the late morning/early afternoon does not mean an afternoon gathering of friends is going to happen.

I was so tired after a birthday party where I only stood around eating and talking , that by the time I arrived home to pick Steve up for our get together with friends, I could only manage a hello before heading straight for bed.  I could barely keep my eyes open.  Steve went on without me.

After a four hour nap, I was able to walk over to the middle school in our neighborhood.  I went along with my friends Valerie and Luke to see a musical the drama club was performing.  Alice, A New Musical, was an original piece of work written by the drama teacher at Nathan Bishop Middle School, and put to music by a Brown University student.  It was so good, this was my second viewing of it.  I had seen the premier of it Friday night with my daughter Ayla.

I walked back home after the play, wondering if I would be able to sleep after my long nap.  I needn't have worried. I was tired enough to sleep through most of the night.

Sunday was the walk a thon day.  I woke up just before eight, which was when registration began.  I figured if Steve and I made it there by nine, that would be fine.  I wasn't really planning on walking too much, I just wanted to show my support for Dr. Safran and his research.

My friend Soli texted me as we were leaving for the bus, and asked if she could meet us there and walk with us.  She met us on Thayer Street, which is in the heart of the Brown University Campus.  From there we set off to find the walk a thon.  Since I had left the registration form with the location listed on it at home, we walked around the campus for a little while before we found it, in the quad in front of the university gymnasium.  It was supposed to be a 5k, but I figured what they really needed was the registration fee, so we paid, walked around a few times, and stopped to say hello to Dr. Safran.  That was more than enough for me and I still wanted to make it to church to the Coming of Age service at ten thirty.  We walked Soli back to her car and talked at little before we had to leave.  It had been so nice of her to come and walk with us.  I never did find my friend from Fain 3 there.

The Coming of Age service is one of my favorite services of the year at First Unitarian.  This is the time when the young people who are in our eighth grade Coming of Age class get up before the congregation and make a statement about what they believe at this point in their lives.  It is always a powerful service, which rarely fails to make me cry.

The service was excellent, but ran a little long.  As I stepped out of the church my phone rang.  My visiting nurse was already at my house to unhook me!  Did I mention I was still hooked up to my chemo?  Since Steven and I had bussed there, I asked the first person I saw who lived near me if they could give me a ride home.  Janet said yes, but sent Steven off to let her husband know where she was going, while we hurried off.  I was back at my house in no time, and the nurse was waiting there for me.

Usually I get a call ahead of time letting me know which nurse is coming and what time they will be there.  Lately there are several different nurses who are work on Sunday, so it looks like I need to just count on them being there forty six hours after I am hooked up. 

Once I am unhooked I am so hungry, I need to eat right away.  I wanted to wait for Steve, who was taking the bus home, so buy the time he arrived I was both hungry and tired.  First comes the hunger, then the incredible tiredness.  At least this much is predictable.

Steven took advantage of my nap time to do the laundry,  and I slept so soundly I missed a visit from my son Alex.  Sigh.

After another four hour nap, I got up for dinner, and Steve and I finished watching the documentary Jinxed, about Robert Durst.  Sitting and staring straight ahead seem to be what I excel at on my chemo weekends.  That and sleeping.

Recently when I was sadly looking around my house at all of the things that have gone undone, I started counting the hours I have left in a day after all the sleeping I need to do.  Some nights I sleep up to ten hours, and on chemo weekends, I take a two to four hour nap.  During the week I work between nine hours (if I sleep late, no shower, no cleaning before hand,) and ten or more if I get up early enough to clean.  It made me feel less badly about the way things are.   It is also not the case for everyday, only about ten days out of the month, but that is a lot of lost time.  I hope in the end, all of the sleep is really healing and not just lost time.

Friday, May 15, 2015

Chemo Number 6, Round 2

It is almost eleven o'clock pm on Friday night.  I had my sixth chemo treatment today, and I feel awful.  I know taking my anti nausea med will help, but that means going downstairs and getting it, yet I sit staring at facebook on my computer screen.  So much time passes, when finally I make myself get up to take a pill, and find some mint gum.  Why is it that the simplest actions are sometimes so hard to perform?
I also grab an extra layer while I am up.  Although it is warm outside, I am sitting here shivering. I don't have a fever, it's just one of those chemo things.  Hot then cold, fine then nauseous. 

When I had my last treatment, I told Dr. Safran this round of chemo has felt much harder than my last.  He asked me to tell him about what was different.  I told him I felt sicker after my treatments.  That it felt like there was a brick in my stomach, heavy and horrible. He told me he could tinker with my dosages and try to make it better.  He changed some of my premeds, switched out the new anti nausea med and gave me the one I had with the folfox, took out the steroids so I could sleep.  It seemed to work.  I wasn't up crazy late, even though I took a nap in the late afternoon.  I did go to a concert that evening, so maybe that helped to tire me out, but I slept well.  I only felt a little nauseous, but I took my ondansetron, and felt better.  I slept more in the days following my treatment than I usually do, which is hard to imagine, but I did.  The adjustment seemed like a good thing.  I still felt tired over the week following chemo, but I have realized that this is a part of my new pattern, and I need to plan for it.  One extra activity during the week, and that's it.  Even if it is just knitting with my friends, it wipes me out for the rest of the week.  I missed a meeting and stained glass, because on Wednesday and Thursday evening, after working all day, I was too wiped out.  I find it terribly annoying that it has taken me five treatments to figure out this pattern.  I realize that if I were writing about it more, it would have been apparent sooner, but at the end of my days, I am too tired to string words together.

After thinking I have made this great breakthrough with my chemo, pinning down what works and what doesn't, I wonder why I feel so horrible this evening.  I had been telling someone this week how much better having regular nausea is than that brick in the stomach variety, but tonight I feel like it doesn't matter. This regular nausea is no fun either.

My treatment went fine today, except they added peanut butter and jelly sandwiches to the menu of foods available.  Now it will be one of the foods I associate with Fain 3 that I can't even name without feeling sick.  I make a fair number of peanut butter sandwiches for daycare, so this could be a problem.  We may only get to serve them on my off chemo week.

I did meet one of my fellow chemo mates today.  We were both called to our appointment together, and she chose the pod next to mine to receive her treatment.  We started talking as we were seated, and then sat on the edge of our chairs having a conversation around the sliding partition which separated our pod.  We were getting along so well, we spent most of the morning talking.  Once we were all hooked up, we took turns sitting in each other's space. It made the hours go by much faster.  At one point she had a visitor, so I went back to my chair, and fell asleep.  This is not something I usually do, but I was feeling so tired.  When I woke up I found Carol, which I think is my new friend's name, peaking around the corner to see if I was awake.  I guess I napped for a while. 

I am a little embarrassed that by the time I got home from my treatment, I could no longer be sure of   my friend's name.  She will understand better than any one else how this could happen though, especially on a chemo day.  

On Sunday there is a walk a thon being held at Brown University to help support Dr. Safran's cancer research.  I am looking forward to seeing her there. I am not sure how much we have in common besides our treatments, but I am looking forward to figuring that out. We share a bond with where we are at this particular point in our lives, and I look forward to sharing and cheering her on from the next pod over.

Monday, April 27, 2015

Pink Tongue Days

Monday, April 27th

Today is what I call one of my pink tongue days.

During the first few days of chemo, my tongue turns this odd shade of bluish white. I am sure there is a chart somewhere that tells me this corresponds to my liver, which at this point is stunningly obvious.  I did a Google search to try and find my color, but there are hundreds of charts out there, with some really scary looking tongues.  I didn't look too long, I gave up when my color wasn't easy to find.

After a few days of this pale blue, the color starts to recede to the back of my tongue.  It is gradual, until there is a patch in the very center that disappears down my throat.  By the end of the week, usually the Sunday after I am unhooked, I have the most lovely pink tongue.  It is like the tongue of a child, fresh, pink and clean.

It will last for the week, until sometime after I get my chemo on Friday.

It is a funny thing to me, my new obsession with the color of my tongue.  I have always brushed it in the morning, and checked it out to see how it looked, it's what you are supposed to do, right?   I never really thought about what I was looking for, although I guess a drastic change would have alarmed me, and caused me to call the doctor or dentist.

Every morning when I get up, and whenever I find myself in front of a mirror, I stick out my tongue to see how things are going.  I give my family updates, by sticking out my tongue to show off my color of the day.

It is silly, but it is a way to mark my time.  Not that I need my tongue to tell me whether I am feeling well or not, I can figure that out pretty quickly when I wake up in the morning.  Somehow it gives rhythm to the time between treatments, and the countdown to when I am done.  It is a small thing, and possibly a strange thing to be fixated on, but for now, it's my thing.

Sunday, April 26, 2015

This Time

This round of chemo is not as easy as my last, especially mentally.  After reflecting on why this is, I think I have figured out some of the reasons.  In general, I feel better than with my last round, so in contrast, the days when I don't feel well, seem far worse than when I was in a chemo fog all of the time.  Things can still be foggy now, but in general, much less so.  I am better focused these days, and feel much less spacey.

The last round of side effects were so weird and interesting. With every treatment they would change slightly, giving me something to focus on.  Each time the effects of the neuropathy worsened, it was  in surprising and new ways.  I had to be creative in dealing with each new level of intensity.  There were physical challenges which had to be met with well thought out solutions.  This kept my mind busy problem solving, so it wasn't dwelling on other things so much. My main challenge with this chemo is just nausea.  The solution is to take a pill.  Sometimes it makes me much feel better, and sometimes it doesn't.  Because it is not just your run of the mill nausea, I don't always recognize it right away, and then it takes me a little longer to get myself out of it. 

As the neuropathy from my last chemo fades, I am feeling some of the same effects I had before in reverse.  My fingers and feet have much more sensitivity than they did a month ago, but they still feel weird.  When I wake up in the morning and stretch my feet, it feels as if they are made out of some kind of stretchy but sightly stiff plastic.  Right now both my fingers and feet feel like they are asleep most of the time, but I can feel them, which is heartening after a few months of numbness.

One of the most important things that helped me through the last nine months was writing about what was happening to me physically and mentally.  Even when I couldn't type, and I resorted to drawing  what I was going through, the process was so helpful.  It gave me a goal every day.  When I stopped writing, things seemed to change, my focus changed.  I was trying not to think or feel so much.  I don't think this was very helpful.  If I sit and start to listen again, maybe I will find there are interesting things about this round, and writing about it will pass the time, and before I know it, it will all be over.