Showing posts with label Folfox. Show all posts
Showing posts with label Folfox. Show all posts

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?


Saturday, January 10, 2015

Monday, December 29

This is my vacation week, I don't have any little ones until next Monday.  I am going to spend my vacation trying to get some of the cleaning done that has been ignored for so long.  My friend Anna is leaving today for her vacation, and has left her car with me.  I am very happy about this, since I will be able to make runs to Savers and the recycling facility that I don't get to on weekends.

I have a ct scan at four today, and have to remember not to eat after two o'clock. My scan is at Miriam, which is very convenient.  Kaileigh, Steven and I walk over to the hospital where we learn I am the last scan of the day. This makes me think they squeezed me in.  There had been a paperwork mix up in the scheduling, and it took a couple of days to get things straightened out. 

This will be the scan which shows just how well my Folfox treatments have worked.

This ct room is quiet compared to the other I visited.  I don't ask, but I attribute this to newer, greener technology I have read about with the cooling system.  This makes the whole experience more relaxing. No loud whooshing sounds.

The drill here is the same as every other time.  There is a bed to climb on which slides into the large donut shaped ct machine.  I have forgotten to wear pants without metal, but rather than having to change into a johnny, I am covered with a blanket and asked to pull my pants down below my knees.
 I get an IV solution in my arm of contrast dye, the one that makes you feel like you might need to pee.  The bed slides into the circle of hard plastic up to my shoulders, and slides out.  I am instructed by a recorded voice to hold my breath and slowly it slides in again.  I notice two emoticon symbols above the bed.  One means inhale and hold, the other means breathe.  I don't remember seeing these on the other machine I used.  Just as my chest finishes going through the donut, I am instructed to breathe again.  We repeat this whole process again one more time, and then I am done.  It seems to go faster than the last two I have had.

In the evening Kaileigh, Steven and I go to see the movie Big Eyes.  It is a good movie, and it was fun to see the big eyed style of paintings, much like those that hung in my bedroom as a child.

Tuesday

Julia and I go to the registry to get her car registered.  We have a very frustrating experience.  We arrive just before it opens so we won't be there all day, and in the end we leave without accomplishing our task.  Most of the people we deal with are surly and unfriendly, surprising since we can only be the second or third person they have seen so far today.  The most helpful people we meet are a woman who was there on business, and a woman at the return ticket desk.  She was kind and clearly described what we need to do to get Julia's car registered.  We need a signature from her mom, so I arrange to meet with her later.

I return home to my cleaning projects. Just before dinner leave to meet with my sister in law at a bank to get her signature notarized on the car registration form.  I manage to do this, drop Steven at a meeting, and make it to knitting on time.  I don't end up having time to eat, but find some chips in the church kitchen to tide me over until I get home.  Ayla and her friend Malani are coming to learn to knit this evening.  It is fun to have new knitters join us. I have forgotten that Malani is left handed, but I figure out how to show her a knit stitch.

Wednesday

I return to the DMV with Julia and Steve.  We go in later in the morning, and our experience today is far nicer than it was yesterday.  I don't know if it is the holiday tonight, but everyone is very helpful.  We manage to register Julia's car with no further problems, renew Steven's license and get out of there in an hour and a half.  Surely this must be a record.

As we are driving home, Kaileigh calls.  She is already at our house waiting to go with me to see Dr. Safran.  By the time we get home, there is only a short time before I need to leave for Fain 3.  We walk over, I register, get my blood drawn, and my vitals taken.  Kaileigh, Steven and I are all shown to one of the exam rooms to wait for Dr. Safran.    While we are waiting, one of the teaching nurses comes in to visit with me.  She asks how I have been doing, and how my other doctor's visits have been.  She tells me Dr. Safran has good news to tell me about my ct scan.

Dr. Safran comes in accompanied by Megan, his resident, and and the nurse who had just visited me.  He asks me if I want to see my scan.  We go to his computer and and he shows me the scan from October, then the scan from Monday.  It is hard to believe this is the same liver.  There are no spots, no large tumor obstructing my vein.  Everything is gone, my liver looks clean.  It is like some kind of magic trick has been performed and my liver has been switched.

We go back to the exam room and Dr. Safran tells me we can plan on reattaching my colon now.  After that is done, at the end of February, we will meet again to see how my recovery is going.  If things look good, we will discuss starting another round of chemo, which will last about six more months.

I have done it.  I have made it through all of my folfox treatments and come out the other side with a clean liver, all by the end of the year.   This is by no means the end, but it is one wonderful way to end a year that has been difficult, and start the 2015 with renewed purpose and energy.  An upbeat beginning to a new chapter.

Saturday, January 3, 2015

Friday, December 19: The last Folfox

I get up early and take my last shower for the next few days.  I try to get everything together that I will need today, I don't want to forget anything.  I am not in the mood for the sandwich cart, so I bring some grapes and cheese with me.

My appointment is at eight twenty which means I could get out early if all goes well.

Today is supposed to be my last folfox treatment.  Steve and I talk about it as we walk in.  I am nervous that my white blood count will be too low today.  I am afraid they won't be able to treat me.

 Steven and I split up at Fifth Street.  He goes on to Seven Stars to get me some olive bread to have with my lunch, I head over to the Fain building.  Faye takes me in as soon as I get registered, and since I am one of the first in, I get my pick of all the rooms.  Because they are expecting such a busy day today, we are in the Mega suite, and I choose the same penthouse pod I had last time.

I get my blood drawn and then see Bess to get have my blood pressure checked and get weighed.  My blood pressure is very low.  If only I could give a little of my low blood pressure to Steve.  My weight is back to where it was pre-all of this stuff happening.  Even a couple of pounds more.  I liked it when it was a few pounds less, but know my current weight is good.  It is better to be a little over before I have surgery.

We wait for Dr. Safran to see us.  He tells me my white blood cell count is a little low, but he thinks it will be okay to treat me anyway.  It is close to borderline, which he decides is good enough.  He tells me that even though this is to be my last folfox for now, the side effects will most likely continue to get worse before they get better.  I can expect them to worsen over the next two months, then they should gradually subside.

I ask if he has counted the spots on my liver, and he invites me to see my scans, the first from June and the second from October.  In the first scan, there are a lot of spots on my liver.  A. Lot.  There is a big blotch where those veins are exiting my liver.  It looks pretty scary.  I can't believe how bad it looks.  In the scan from October, things have shrunken down considerably, but it is still pretty messy looking.  The last scan was six weeks ago.  I will have another on twenty ninth to see how things look now.

We discuss the liver and the colon surgery.  It looks like Dr. Charpentier and Dr. Lentrichia don't operate in the same hospitals.  I tell Dr. Safran that I don't want to switch surgeons, that I would like Dr. Lentrichia to repair my colon, even if it means an extra surgery.  He likes this idea.

We make an appointment for the thirty first, New Years Eve.  By then he will have the results of my CT scan, and we can make a plan for the next phase of my treatment.  I think this will be a good way to end this year.

While I am getting my chemo, Dr. Safran stops by to tell me my cea level is two.  In a person without cancer, five or below is considered normal.  This is more good news.

In the evening, Kaileigh, Alex, Steven, Jill, Brian, and I take Sara out to Flatbread Pizza to celebrate her birthday.  None of us have been here before, and we enjoy everything about it.  We finish our meal with some cupcakes and a round of Happy Birthday.

This has been a most excellent day.



Friday, January 2, 2015

Sunday, December 14

When I get to church this morning, the first person I run into is Martha.  She has something for me.  She was hoping to give it to me last night, but she didn't see me.  I wondered what she was talking about.  She had been to the Sr. High Youth Group Coffee House.  It had completely slipped my mind.  I had every intention of going to that, and then, completely forgot about it.  Completely.  Chemo brain is such a weird thing.  I hope that when I am done with this my memory comes back.

Martha gives me a bag with something wrapped in tissue paper.  When I slowly unfurl the paper, I find a fine red felt fox.  She is beautiful.  Martha runs the Girl Effect sale, and saw her when she was ordering.  She only ordered one, just for me.  This is just the sweetest thing.  I think I will name her Martha.

It is funny, because I looked at the felted animals that were available at the sale and thought that if there were a fox I just might have to get one.  Martha is a foxy one!

We learn about Hanukkah in Sunday school today.  We play dreidel and make some paper menorahs to help us celebrate when it begins on Tuesday.  It is our last class before we break for two weeks, so we also make felt Christmas Trees.  The children are all so excited about the holidays.  Some of then celebrate both, some are just learning about Hanukkah.  It is a magical time of year, anyway you celebrate it.

By the time I leave church, my feet are so achy, and I don't feel so well.  I am invited to a birthday party for one of my daycare children, but decide it will be best to go home and take a nap.  Friday I am supposed to get my last folfox treatment, and I don't want to push myself and get sick.  Instead I go home and take a long nap.

When I awaken, I still don't feel that well, and my sisters are coming over for dinner this evening.  With much help from Ayla and Alex, we manage to get everything ready before they arrive.  My sister Jill had a birthday just after Thanksgiving, so we are having a little party for her.  She doesn't know, so it will be a surprise for her.  Ayla makes one of my sister's favorite meals, mac and cheese with sausages and broccoli.  For dessert, a cake from Pastiche of course! It is a delicious celebration.
After dinner we test out a game for the table on Christmas morning. It is called WhatchamaDraw it.  There are cards with drawing cues on them, things like draw an animal that has a chicken head, a pineapple body and duck feet.  You then have three minutes to draw.  It is hysterical to see what each person comes up with.  There is a competitive facet to the game, but we chose to enjoy each creation rather than be judged.  We do challenge one person to figure out who has drawn what.  This makes it very interesting.

While everyone is still playing, I go out driving with Allie.  We need to get some night time driving in, and is not just dark, but also a little rainy. 

When I get home, Steven and the kids are still playing the same game.  It is sure to be a hit on Christmas. 

Monday

Allie and I go to driving this evening.  She takes me to Bed Bath and Beyond to do some Christmas shopping.  She is very helpful in advising me about a gift I want to get for my sister Sara.  Since we are in Seekonk, we decide to go to Target too.  I am on a mission to find a hot water bottle for someone with cold feet.  At both Bed Bath and Beyond and Target the sales people think I am talking about one of those sippy cups grownups carry tea or coffee around in.  This is very amusing.  Neither store has what I am looking for though.

Tuesday

We make paper Hanukkah menorahs today.  They are made using rectangles of paper for the candles, pasted onto a backround which has a larger rectangle menorah.  We keep one candle which has a paper flame on it stored on the back of the paper in a pocket with the flames for the other candles.  This is the shammos candle, the one which is used to light all of the other candles.  Each night, the children can light one more candle until they are all lit.  This evening is the first night, so everyone will have a paper candle to light.  We also play dreidel with chocolate gelt.  This is so popular, even my two year olds figure out how to spin the top to play.

In the evening I have knitting, although I arrive late.  I don't get much knitting done, but I do get to eat cookies!  Linda has been baking and brought some in to share.  Lonnie, Sarah and I make a good dent in the cookie supply.  Someone has left some yarn for us today, a nice bag full.  It has some good soft wool that will be perfect for items for our mitten tree, and some needles that will come in handy when we teach newbies how to knit.

Wednesday

I have a nine thirty appointment with Dr. Lentrichia today. He does the usual inspection of my belly, my bag and my stoma.  Everything looks good.  We talk about my chemo and how that is going.  I tell him about my visit to the liver surgeon, my MRI,  and my last visit with Dr. Safran back in October.  It all seems so long ago.

He tells me he has had patients who have had great success with the folfox treatments.  When things go very well with the treatments he tells me there is often nothing there to remove when he checks in on their colon.  He thinks this may be the case with me.  This is great news.  I love that Dr.  Lentrichia always takes time to sit down and understand what is going on with me.  I appreciate his attention and sympathy to my situation.

I leave with an appointment for next month, and a big hug.

When I get home, I find that I an locked out.  I have dropped Steven off downtown to cover a story, and forgot that I didn't take my keys on the way out.  My feet are still feeling funny, so I sit in the car and clean out my handbag while I wait for Sara and Alex to return.

In the evening, Julia and I go shopping on Thayer St.  I am still looking for that hot water bottle and am sure Pleasant Surprise is the place to find a cute one that looks like some kind of cute animal.  I don't have any luck, but we do have a good time.