First Day of Chemotherapy--The Dreaded 3rd Floor.............

1/31/13--Thursday--Day 110--Focusing on Chemo as the Path to the Cure Makes this Very Doable!

We thought we'd come to Mesa yesterday, but once I went to have my nails done, my energy was gone and I didn't feel like making the trip.  It seems my endurance still maxes out at about an hour and a half no matter what I'm doing. So this morning we left by 6 AM for our first day of chemo.

We started at Preston's signing some paperwork for him to move into a little larger apartment.  His current apartment is just over 400 sq ft and I can't tell you the number of times we've all stayed with him along with Mike and Suzie and even Brooklyn. We would fill the place with air mattresses and he never complained. The new place will be twice the size with a den where we'll put an extra bed so that in itselfe will help a ton and I won't feel so bad imposing.

After the paperwork, we arrived at the MD Anderson Cancer Center at 10 AM as scheduled. First I reported to the lab center.  A young lady named Jesse took me back to do my labs and once she learned it was my first time getting my port accessed, she was careful to explain every step. We had been told to place a glob of the prescription lidocaine cream on the port area an hour before coming. She said it was really good we did that as she removed the band aide and started poking around the area with her fingers feeling for the bumps that mark the corners of the port.  The Bard Power Port is a triangle shape device about the size of a bottle cap and the diameter of a quarter.   The top looks like a mini trampoline with a membrane of some kind stretched over it.  It is a self-sealing silicon septum so after a special needle accesses it, it reseals itself.  Under the septum (trampoline) is a small basin.  On the top of the port, each corner has bumps called Palpation Points on the rim of the port so the person accessing it can absolutely feel all edges of the port and determine the positioning.  The port is surgically inserted under my skin by my left clavicle bone with nothing sticking out of the skin.  The trampoline-like membrane is attached to a sealed basin which has a long catheter running out of it and is inserted into one of my large central veins that goes to my heart.  This way medications or fluids can be delivered directly to my blood stream, and blood samples can be taken from my blood stream with no need to have repeated sticks in my wrist and veins.

Jesse spent time pushing on the port making sure she had a good handle on the positioning of it.  Then she brought out the supplies, which included a mask for her and I to wear because this was a sterile procedure.  She started by cleaning the skin with Chloraprep which was this cool sponge on a wand she punctured that contained antiseptic which fed into the attached sponge.  It was like one of those dish soap scrubbers that has soap in the handle that comes out the sponge once you start rubbing the dishes.  She then put on a special solution around the area so the tape would come off easily later.  She sprayed a freeze antiseptic spray on the area right on top of the port for 10 seconds which also helped numb the area.  Then she inserted the PowerLoc needle or what she called a Huber needle, which is basically a the special curved needle that won't hurt the port.  I didn't even feel a pinch when the needle when in.  "That doesn't feel right," she said and quickly made an adjustment saying "there we go."  This made me realize experience is needed to access the port.  She confirmed it takes doing it a hundred times or so to really get a good feel when it's right. I was glad to have someone who could recognized that.  She tested it by making sure it could pull blood then rinsed it with some saline.

She told me my orders were for a CBC which was a Complete Blood Count screening and a Hepatic Function Pannel for the Liver.  The blood count was mainly so they could watch my red blood cells, my white blood cells and my platelets.  The liver screen is to make sure my liver isn't being hurt throughout the treatment.  Once she pulled the tubes of blood out of the port, she flushed the port with two vials of saline and did what they call a Heparin lock on the port, which basically means they fill the port with Heparin to keep it from clotting. She finished by covering the whole area with clear cellophane band aide called Tegaderm which sealed around the edges and made a sterile pocket type environment so just the tubing came out.

From there we headed to the second floor.  Last week the clinic had given me a large section to read on chemotherapy so Michelle, Dr. C's assistant, wanted to meet with us to answer questions we had after reading the material.  Of course, I had a ton.  She carefully listened and answered each one.  I started with Greg's big questions, "Am I for sure going to lose my hair?  Some of the literature said thinning?" I knew the answer to that, but we were both hoping it had changed.  It hadn't.  She confirmed my hair would for sure fall out.  We went through a serious of about 10 more questions and Michelle was able to carefully explain them all but one.  "What stage am I?"  Because staging depended on the last pathology report as well as the first, we had never been clearly told.  We think Dr. Matt might have said Stage 3A, but we weren't positive.  And it's not that it matters so much, I just really wanted to know.  Michelle said she would research that and get back to us for sure.

Even though it was getting close to time to make the dreaded rise to the 3rd floor, I wanted pictures with everyone before I lost my hair.  They were all so accommodating.  As they came in, I told them about my Pretty in Pink party and they were all so excited.  We got a picture with Michelle and Lisa, assistance and nurse to Dr. C.  They tracked down Dr. Byrum and Melissa, so I got a picture with them.  Even Dr. C stopped in and took a picture.  And we got pictures with Adrianna, my nurse navigator, and the two sweetest nurses there, Tia and Betsy.  I was so happy and that meant the world to me.  The only one we missed was Dr. Matt because he was in surgery so we'll have to find a way to photoshop him in.

That was it.  There was no more avoiding.  It was noon so we were already technically late to infusion, but they take you when you get there.  We walked down the long 2nd floor hallway past all the empty chairs to the elevator.  I didn't want to push that button.  From the beginning I said I would never need to go to the 3rd floor, but here I was.  I stood in the elevator for a few seconds staring at the button.  Greg thought he pushed it but it never lite up so we found ourselves down on floor one--the perfect chance to escape, but I didn't, of course.  Instead, I reached over and pressed it--floor 3--then held my breathe as we ascended to the top floor.  The elevator doors opened and I sighed a breath of relief.  It looked just like the second floor but different colors.  I don't know what I was expecting.  There was the same long waiting area looking out over the long windows in the courtyard that was now under construction for their five story tower expansion.  There were what seemed like hundreds of chairs filled with very few people.  I went to the checkin desk just like I did on floor two.  A nice lady named Donna greeted me. "I'm a newbie," I admitted.  "This is my first time to the third floor."  I told her my story of my first day there with Dale the volunteer and how I didn't even know what "the infusion floor" meant.  She laughed.  She said they were all nice up there and I would be taken good care of.  Instead of labels, she put a hospital armband on me explaining they want to make absolute sure they are administering the correct drugs to the correct person.  I asked her if they had water back there as I was quickly reaching my limit of being active.  She said yes they had water and juice and would even serve me lunch.  Wow, you can't beat that!  

We sat down in two of those empty chairs waiting to be called back, which didn't take long.  The aid escorted us back to the center area of the building where, on the second floor the exam rooms are located.  On floor three, it's a large open area all the way to the windows on the other side of the building, but it is divided by low cubicles.  It was really nice.  There were private rooms with beds on the wall against the waiting area if you didn't feel good and wanted to lay down to receive your treatment.  Then the rest of the area was filled with cubicles each with a comfortable looking recliner and a chair.  A nurse sat at the end between the two cubicles so it looked like a 2:1 ratio of care.  They lead me to the best seat in the house--by the window overlooking the parking lot--and said there was no guarantee I could get this seat every time, then laughed.  Unfortunately Greg's seat wasn't near as comfortable as mine.  Cheryl was my nurse and I explained this was my first time, so she said she would explain every step and she did.  She was great.

It is up to the nurse to read the lab work and do the calculations for the chemo that is ordered.  They calculate your weight, height and body mass along with your lab results to determine how much of the doctor-ordered medicines you will receive.  After they do the calculation, a second nurse does it as well to check accuracy.  Then they order the medicine from the pharmacist who also looks over the calculations.  First there are three pre medications.  Dexamethasone is an anti-inflammatory and immunosuppressant steroid that helps prevent reactions.  In addition, I would receive Benadryl to help prevent reactions and finally Pepcid to help with stomach irritation.  They infuse all of those in within 15 minutes.  Benadryl usually knocks me out when I take it at home, which is why I rarely take it.  This was even more potent.  It didn't take long before the room started spinning and I became "drunk" as though I had had one too many margarita's.  I was trying to stay focused because the building Chaplin had come by.  He recognized me and while he wasn't the hospital Chaplin we had talked to in the hospital, he had come to see me when I was less conscious.  I enjoyed talking to him and especially praying with him, but I was glad when he left so I could tell the nurse of my crazy head.  When I did, she said I should not be feeling that way.  She went to check with someone and returned saying it was probably because we put the Benadryl in too quickly but it would be okay.  There is a 30 minute wait before they start the chemo drug, Taxol.  During this time Cheryl carefully explained the known side effects and when I should call the clinic.  Again, she did a great job.

Finally it was time.  The pharmacist brought out the Taxol and we were started.  I was so glad because I could barely stay awake by then.  It was supposed to take an hour from here.  They brought me a warm blanket and I was out.  My spinning head forced me to slept.  I didn't sleep too long though as I woke up when my left hand felt tingly and funny.  It was tingly and numb in my ring and pinky fingers a down my hand and wrist.  When I asked the nurse about it, she stopped the infusion immediately.  She explained that was a reaction and called Dr. C.  By the time Dr. C called her back, the tingling had gotten better.  She started the infusion on half the speed this time.  When I tolerated that for a bit, she increased it back to full speed.  Almost immediately my feet and legs went numb.  Following Dr. C's orders, she reduced it back to half speed and gave me some Ativan--great, another sleepy drug.  The tingling mostly went away.  She explained that my infusions will probably have to take longer because of my reactions.  Instead of planning 2.5 hours, we should plan 3.5 to 4 hours.

When we were finally finished, she removed the tape and needle accessing my port after doing the same flush routine they did downstairs at the lab.  When I stood up, I was very wobbly so she and Greg both insisted on a wheelchair to take me downstairs.  I hated that.  But that was it.  We were in the car and on the way home.  I crashed immediately having to forgo my visit with my grandma and Aunt Mary, though I vaguely remember telling Greg to take me there and him saying okay knowing I was just talking.  In Globe I got a small snack and milkshake and though I slept more on the way to Safford, by the time we arrived home at night, my head had cleared up.

So that's it--the story of my first day of chemotherapy.  It was a great learning experience and as I repeat it every week, I'm sure the details will become not only more familiar, but more clear.  As always, I had lots of support from text messages and FB posts, which helped keep my anxiety down for the day.  But honestly, I wasn't really worried.  How can you be worried when you know this is finally the first step in reaching the cure.  I focused on that all day.  I realize chemotherapy is a mountain in itself, but it is a path I have to climb to reach the cure, so focusing on chemotherapy as the path to the cure makes this very doable.