Sunday, July 31, 2016

I know it has been a while here, but things are going well.  It has been almost a year since I last posted.  Although I have several drafts of things over the last ten months, it turns out the final months of my treatment were the hardest to write about.  I am not going to go into that here, right now though.  I will come back and tell you about that time another day soon.

Today, I will tell you about what I did last week.  I stood up before the congregation of the church I attend, the First Unitarian Church of Providence, and I gave the morning talk.  This is how we do church during the summer at 1st UU.  We have members from our congregation talk about something they have experienced or know about.  I have been to many of these services in the past, but never did the talk myself.

I am not one for public speaking, it makes me very nervous.  I practiced, and practiced, so I managed to do it without stumbling.  I also found that wearing my reading glasses made it impossible to see anything clearly past what I was reading, so this lessoned my nervousness too. In the end, everything went just fine, and I was glad to be able to tell this story to the congregation.

Steve recorded it so I could share it with people here, but if you would prefer to read the text, it is beneath the video.

Thank you for allowing me to share this with you, and for supporting me through this journey.



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.