Back to the Trial

The remainder of the week at Chapel Hill was mostly blood work. We had to do blood work every day at particular times. That was okay... I am getting the hang of this. I found a new trick. See, they are going to take blood from my arm in one of three places (Elbow, hand or wrist). And when I feel the needle, I tense up. Then the vein disappears. It's like magic. So... my thought is, if I can't feel the needle going in, I won't tense up and I will only have to get stuck once. Smart girl that I am... I decide that my Emla cream put on those locations will stop the pain. So, Wednesday I put it on the inside of my elbow, the back of my hand and the inside of my wrist, covered the places with gauze pads and went to get the work done. Piece of cake! I didn't feel a thing! Obviously, this is how I am going to handle my appointments from now on.

So, I felt pretty good. Mom and I did some shopping. Marie and I hung out again and went for frozen yogurt. We also swung by her folks old place and talked about the time we all stayed there while her folks were out of town over Pride weekend. That was a great weekend. No great drunken party... just a group of friends chilling in the back yard talking, laughing and enjoying each others company. We drank sparkling water, took cold showers rather than turn on the hot water, used candles and kept it all real low key. What a great memory.  Then my sweetie arrived to spend the night and I got to show her the amazing trick I learned about the dual shower heads (getting a high powered heated massage on both your back and front at the same time is freakin' awesome!).  But poor Michele... Mom snores. I snore. I snore a lot when I don't take Benadryl before bed. She said we were amazingly loud, but mom swears Michele's snores could wake the dead.  Thank goodness we were in a corner room. I can't imagine how anyone in the next room could have slept through all three of us.

Thursday we let mom sleep. I had worn her out running around the day before, so Michele got to go see the infusion room where they take my blood. We met the nice cracker lady (she goes around with a basket of crackers and York mints for the chemo patients) and we explained to her our firmly held belief in dessert as a main course.  I think if I ever start my own religious cult, I am going to make that one of the central tenets of the faith. We must have convinced her, because I heard her telling the next patient to eat dessert first.  Then we went out with Robbie and Marie for dinner at this groovy restaurant. It was like walking into a very kitschy consignment store that sold food. Every wall had a theme (70's bachelor pad, Hawaiian tiki bar, 50's pin-up girls). The food was pretty tasty, but mostly it was just so great to hang out with our friends.

Finally it was Friday and I got to do my last blood draw for the week and go home. I gave my Clinical nurse my notes on what side effects I had and when, then we headed out. I fell into the bed as soon as I got home and slept and slept and slept.
 

Babbling backlog inventory

Geez... I am so slow at this lately! Here it is Saturday (I think) and I haven't finished telling you about the trial. Then I STILL have stuff to write about New York. Now today I went to my Aunt's wedding and then BAM! tomorrow is Mother's day.  Okay... I am tired and in pain because dummy me totally forgot to take my meds with me to the wedding today, so let me give you just a brief summary of what all I still have to talk about.

Monday I have to be back in Chapel Hill for infusion two. The day should be shorter than day one, which is awesome, but the appointment is at 8am, so we will be leaving real early that morning for the hospital and returning really late, But then I have most of the rest of the week off, so I can actually catch up on all my blog topics in my head.

I need to tell you about the last three days of week one which include such highlights as the very retro restaurant we went to, how I am becoming known as the singing patient, the simple joy of writing thank you notes and the snoring competition.

I need to tell you all about why Lennon's should never be allowed in kilts, dancing in glass slippers is dangerous, the joy of napping, chair dancing and the most beautiful thing a bride wears.

I need to tell you all about the DIY wonder wedding I just attended that filled my heart with joy. How a hug can fill the space of almost 15 years apart and how wonderful it feels to be accepted for who you are.

Then I need to spend a whole lot of time explaining why I have the best mother in the whole world.
So... please wait till later in the week when I get back from UNC, and I will do my mandatory resting with my computer and my thoughts.

And for all my readers... Thank you for letting me share these things with you.
 

The day off (Trial day two)

Day two was my day off. I think after attacking and bruising every vein, my body just needed a day of rest. And what a great day it was! Two of my old friends live right down the street from where I am staying, so I got to spend my day reconnecting. Marie came over to the hotel and we went to sit and talk at the restaurant next to the hotel. We talked about love, loss and dealing with getting older. We caught up on ten years of gossip. We talked old friends, new choices in life, old flames and what exactly is love? We talked about the future, the past... the way that the Big C has changed so much. It was a great talk... one of those ones that goes on, goes in circles and goes to your heart. It was exactly what I needed.

Then we went to her rehearsal. Let me tell you a little about my friend Marie... Marie is an Opera singer. Her voice is deep and rich and makes your heart feel every note, even if you don't want to feel the pain or longing she is singing. I remember a performance she did in college of "Send in The Clowns" that had me on the edge of my seat, tears rolling down my face. Her voice somehow finds the shared experience and makes you go through the emotions with her. She sang at my first wedding with Michele. To hear her and Robbie perform from Phantom of the opera is, for me, a breathless experience... so getting to go to any rehearsal with her is a pleasure.

So we went to the church where the small cast is doing what they do. There are two performers for almost every role, and when the whole group sang together, my entire body became one giant goose bump. I could feel the notes under my skin, vibrating every vein, every muscle... and most importantly... every sore and aching lymph node in my chest. I moved around from behind them to sit on the floor in front of them, closed my eyes and just let them sing straight to my sore, sick body.

Afterwards, we went out with Robbie for dessert and yet more conversation. Again, we talked life, love, death and of course memories. It was very cathartic for me.

Then they took me back to the hotel, where we played with the elevator floors. Seriously... I have to figure out how to get some of those floor tiles in my house.

In talking to Marie, we discussed forgiveness and regret in relation to past relationships. You never realize how much of your current life is formed by past relationships until you sit down with a friend after a 10 year separation and look back over everything. How the betrayals stop you from connecting. How your own guilt over your part of the bad relationship help you to build better ones now, or sometimes how you make yourself pay over and over for things that you can't fix. I have often said that the person I was years ago is not anyone I would like to be now. But being that person somehow brought me to where I am today. Would I change anything from my past? Probably not, mainly because that would make the current me a different person. We discussed whether a person ever truly changes. Can a person who does so many wrong things ever change? Or is the essence of you set in stone, and your choice of actions the only mutable thing?  So, if you are essentially a good person very deep down, but you act in certain negative ways at one point in your life and change to a better person as you get older, is it really that you changed, or is it just that the real You is finally taking over? How do you know exactly what the real solid You is?  Can you ever teach an old dog new tricks?


 

Never met a stranger...

I need to take a little time to tell you about this place we are staying. It is an Aloft Hotel.

 This place Rocks! Very Art deco, friendly staff, and I have to say... the coolest elevator floors ever!

Let me tell you about this staff... The valet guys ask about my health every day. One of them gave me a small box of perennial bulbs to plant when I get home.

 The night security guard watches my as I sit on the bench at night.
The front desk night manager makes sure I have 4 packets of coffee for the morning for me and mom. The rest of the desk staff asks me how treatment went, how I am feeling... basically making me feel very taken care of.

The floor in the elevator is way too cool!

 The restaurant next door is perfectly fine with me tying up an outside table for 5 hours while I reconnect with an old friend.
Every day I walk downstairs and feel taken care of. Now I understand why my customers like me so much. It's amazing how great customer service goes from just doing your job to doing what you can to make someone's day special. I will be leaving with phone numbers for new friends I have made here, a box of soon to be beautiful plants and a great memory of what could have been a terrible experience for me.

 

 

Day One of Phase one Trial

I didn't sleep very well Sunday night. My back hurts from what appears to be a knotted muscle around my shoulder blade. So I was up multiple times that night. At 5:30 am, mom and I got up, had coffee and headed to the hospital. I dressed in my pretty blue dress and a big smile.


Me, dressed up in my pretty dress for my first day

To start with, I had to lay in a bed at the infusion center and let them run three tests. I think it was another EKG, but they had already given me the Benadryl and Tylenol that you take with Herceptin, so I was sleepy. I did play with the bed of course... lifting my feet, lifting my head, lowering it... until mom told me to just lay still.

I fell asleep pretty quickly after they started the Herceptin. I only woke up when they came in to put the IV in to check my blood.




Me, laying in my infusion bed

I woke up a couple more times, once from a dream that my Dad and I were in a field of what I first thought were flowers, but they turned out to be large purple butterflies. Mom stayed with me all day. I don't know how she could stand to sit there for 13 hours with nothing to do but listen to the history channel. 
The nurses had to take three samples of my blood. The first time, the IV worked. The second time, it didn't work at all. So, next, they stuck me in the hand. Then... the final blood check we had to wait to do a certain number of hours after the infusion. I wandered the halls, my back hurting, flapping my arms.  Finally, 9pm came. 


Sleeping princess!

The arm IV didn't work. My hand had already been used. Lymphedema in my right arm means we can't use that arm, so the nurse tried my hand again, but it wouldn't work. No veins would show up. *Sigh*... apparently, my veins hide when I am tense. So, I asked her to give me a few minutes.

Years ago, we went to the local Renn fest and we saw a hypnotist. I bought his CD to stop pain. I have listened to them so many times I know the whole starting sequence, and I can relax myself completely. So... I used those techniques to relax and TA-DA!  A vein! Finally!  The day is done!

Mom took me to get soup because I hadn't eaten ALL DAY!  I got back to the hotel with mom, we ate some soup, mom went to sleep and I, having slept all day, couldn't sleep. So... I took a shower. You know... this hotel is so awesome... they put us in a handicapped accessible room. So my shower has a stool and two shower heads. Let me tell you... if I ever re-do our shower, I am putting in a second head on the opposite side. It felt so amazing.

So Far, all I have had as side effects was a little bit of the poopies, some slight nausea and my temperature fluctuates. I was terribly hot... then terribly cold. But that has all stopped in the past two hours. Tomorrow is a day off for me. I have no tests and maybe I can spend my day napping and visiting with an old friend. 





The Trial Begins

On Thursday the 2nd, my Clinical Trial began. Mom and I came to Chapel hill for Thursday and Friday to do all the preliminary tests and meet with the doctors and nurses in charge of the trial. Thursday started with a CT scan, then an EKG and an Echocardiogram.  The nurses who did all these were pro's at sticking me with needles without me noticing. My port, which has not been being used much since August of last year, is acting up. It happily takes fluids, but has no interest in giving any blood back.  The tech doing the echo told me once again that I have a picture perfect heart. Hey... I guess we take what praise we can get at this point.

Friday is blood work, and doctor's visits. I drank a lot of water Thursday night hoping to get my port a little more active, and you know what? It worked!  Thank good ness! My port is functioning again. So the nurse pulls a bajillion tubes of blood and then I am off to the doctor. We go over my CT results, which show that while there has been growth, it hasn't been much growth, even though I have been off chemo for a month.

Then the doctor and clinical nurse go over my other tests. Nope... I am still not pregnant. All my numbers look good except the one about clotting, and that's because they took it from my port. Apparently, they inject this stuff into your port to stop clotting and to clear it out. So... Yet another arm stick. I fell asleep waiting for the nurse to come stick me, and according to the nurse, when she came in, I was asleep singing Margaritaville. Don't ask.... apparently I sing when I am under the threat of being stuck with a needle.

They put us up in this really great hotel. It has a heated Salt water pool!  I was in that thing so fast... it took down the swelling in my chest so nicely.

And That was the first two days of my trial... the testing phase! 

Future project ideas

Michele and I talked a lot on the trip. You do that when the drive is hours of not really exciting scenery and the radio is picking up nothing but static and weird talk radio. One of the things we talked about is our house. See... she doesn't know what she is going to do with it when I am gone. She said she doesn't think she can bear to be in a house that size without me, but she also can't stand the thought of not being surrounded by my preference for Crayola colors in every room. So I came up with an idea.

I still have cans of the paint for every room. I am going to get some canvas from the store and paint a square the color of the room it belongs to. Then, because each room has a purpose or theme ( Like my orange library is really autumn themed) I will add elements to the squares to represent each room, things like small frames in the yellow picture hallway, or coffee related art in the dining room, or eating related things in the kitchen. That way, she can always take the house with her.

Then I thought about how to best help Ryan cope. So, he and I are going to make a memory album. I will take a picture from something we did as he grew up and write what I remember, and he will do the same so each picture will have a story for him to share when he has kids of his own. We already talked about some of the stories and pictures we plan to use.

Any other great ideas out there?

Silliness from the trip

Tara and Sisto had these two dachshunds, Louie and Lena.  Louie usually takes days to warm up to someone. But of course... I think Louie is one of those special dogs who knows when someone is sick. I spent a lot of time napping, and Louie spent a lot of time napping with me.  The day we went to leave, I was having  a lot of pain and apparently was whimpering in my sleep. Tara and Michele had gated the dogs away from me and they were going nuts. Michele told her to let them loose and watch. Both dogs settled down on me while I was napping and gave me kisses till I stopped whimpering from the pain.

 Then we visited a Vodka distillery. Their sign out front was bizarre. I had to go back and re read it just to be sure I read it correctly.