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.