Tomorrow Starts Radiation Treatment One of Thirty.......

8/11/13--Sunday--Day 302--Our Celebration Day is Getting Closer

So here we are, the night before the real radiation starts.  It has been a busy two weeks, and really, a busy two months.  Getting school started is always hectic--in fact, it's definitely my busiest time of year at work--but this year things have been extra busy as we are implementing three new major programs in the middle of starting school.  That coupled with being gone in the middle of it all for my port removal and mapping day, plus, not knowing when everything was going to start made it even more challenging.  But I got through it, school started, and here I am about to start the real thing.

After my last post, I started to wonder and worry about what this change in treatment was that happened in the middle of the mapping session.  All I could remember was Dr. Grade coming in and saying she wanted to see if my insurance would approve a different kind of treatment.  Then, once they did, we redid my body mold and everyone said this new treatment would be so much better.  It all happened so fast while I was in the middle of the mapping.  I wasn't even sure what the procedure was called, much less how new it was, what it really meant, and why I suddenly qualified for it.  By the end of the weekend, I was really anxious about "it" but couldn't even begin to research "it" because I didn't even know what "it" was called.

My 12-14 hour working days didn't leave me a minute to spare on Monday, but by Tuesday, I had to make time to call the doctor.  I was going crazy over not knowing while I waited for the call to come start treatment.  At lunch I was able to get in contact with Sue, Dr. Grade's assistant.  I explained to her what had happened during the mapping and how everything changed so fast.  I told her it didn't seem like the right time to ask questions as I was stretched out on the body mold, naked from the waste up while five or six people were tagging and tapping me.  Sue was super sweet and after looking at my chart, assured me the new treatment option wasn't new at all.  It was just different.  It was more protective of surrounding organs.  She said I would be receiving Intensity Modulated Radiation Therapy (IMRT) instead of the traditional 3 Dimensional (3D) Radiation Therapy.  She assured me this was really much better and would reduce the amount of time I would be on the radiation table, but said she would have Dr. Grade call me to better explain the treatment choice.

By early evening Dr. Grade called.  She was understanding of my confusion and patient in explaining IMRT.  First, she clarified this was not a new treatment as it has been used for quite some time over the last decade.  She also assured me I would be receiving the exact same dosage at the exact same intensity as 3D radiation.  Then she said something that made complete sense to me and put it all in perspective.  She said, "IMRT is a more advanced technology.  Basically, it is a different software approach."  She explained that 3D radiation uses a beam of radiation to treat one field at a time.  IMRT is a continual beam which moves all around you to treat all of the fields while turning on and off to avoid areas not being treated.  "If it's more technologically advanced, why isn't it used on everyone instead of 3D," I asked.  The answer--it's more expensive so many time insurance companies won't pay for it because it produces the same results, just more safely.  It is less dangerous on the surrounding tissue and organs.  She said that is why IMRT is not usually used to treat breast cancer, and when it is, it is more likely approved for left side breast cancer, to protect the heart, verses right side, like mine.   So again, why did mine get approved I asked.  She said I was approved because of the mammary gland tumor which could not be removed.  She said the mammary glands are much deeper than the lymph nodes so delivering radiation so deep can be tricky.  The advanced technology of IMRT will make that easier to pinpoint and reach while protecting the vital organs and tissue around the mammary glands.  So while I still didn't really understand how IMRT was going to work exactly, I at least had a starting point to do some research and learn.  The other information she gave me, which surprised me, is that she wouldn't be treating the areas where the Level 1 lymph nodes or Level 2 axillary lymph nodes were removed, but she would be treating the Level 3 axillary lymph nodes that were left in place.  She said studies have shown if cancer returns in the lymph system, it usually returns to the area above where it first was, not in the spot where the lymph nodes were removed.  Plus, radiation where the lymph nodes were already taken out increases the risk of more severe lymphedema.  She ended by saying my plan was almost complete.  It would be sent to Houston for review, but she anticipated us being able to complete the imaging run on Friday and start the real radiation on Monday.

When I got off the phone, I felt lucky that everything had fallen in place as it had.  It was my concerned questions when Dr. Grade walked in the room during the mapping session where I wanted to make sure she was going to cover my mammary gland with the radiation that had set this all into play.  Because of the mammary gland tumor, I was going to receive a more technologically advanced, more precise, and more safe type of radiation.  I was once again grateful for the doctors at MD Anderson, and thankful for my insurance allowing this.

Wednesday went by with no phone call, but Thursday, just before noon I received my call from radiology scheduling me to come in the next day for the imaging run.  This is where they run you through the radiation plan, but instead of delivering radiation, they take images of where the radiation would hit inside of your body and make sure everything lines up.  My appointment was set for  1:20.  Unfortunately, Greg had had just as difficult of a week as I had.  He had been working non-stop for five days trying to fix one of his trucks at the delivery business.  After a final attempt, the engine seized once again, and it was done.  So Greg had to be on his way to Amarillo, Texas in the next couple of days to buy a truck and get it back before Monday.  We decided I would go to the imaging appointment by myself, so he and Brooklyn left Thursday afternoon for Texas, and Friday, after working a couple of hours, I left for Mesa for the first time alone.

When I arrived at MD Anderson Cancer Center, I stopped to say "hi" to the ladies in the lab showing them where my port had been removed.  They were happy to hear I was starting radiation, the last leg of this journey.  Radiology is on the first floor just around the corner from the lab.  When I checked in, the receptionist pushed a button and the door opened automatically as he instructed me to go on back.  I must have looked a little confused because he immediately asked if I knew what to do.  I told him I really didn't as this was my first time.  He told me to walk down the hall and the changing rooms would be on my right so I proceeded through the door.

The waiting area and changing rooms were where I had waited to be taken back for my mapping.  You go into one of the changing rooms, lock your clothes and personal belongings in a locker, put a hospital gown on, and wait in the women's waiting room until they call you back.  A nice woman volunteer offered to get me something to drink as I waited and then sat and chatted with me until the radiologist came to get me.  He introduced himself as Earnest and walked me to a room different than where the mapping and CAT scan had been done.  On the way, he stopped and showed me the control area where he and his partner Kalib would be controlling the scanning. He showed me the video monitors where they would be able to see me the whole time as well as hear me.  He then lead me through what looked like the largest vault door you can image.  It must have been three feet thick.  From there we walked down a hallway with backlit pictures of nature scenes from floor to ceiling giving the impression we might be looking outside of this cave-like hallway.  Then, as we rounded the corner, there was an ominous machine dominating the room.  The hard, bench-like table with my foam-hardened body mold lay in the center of a crazy concoction of high tech tunnels, arms, and panels.  At the top was the round CAT scan donut machine, but in front of that were what looked like numerous arms with round and square shaped screens.

Earnest and Kalib where both very polite and super nice explaining first that they were going to have to remove my gown and I would be bare-chested throughout the treatment as they needed to line up the taped marks with the lights from the machines.  They carefully positioned my arms, my legs, my hips trying to get my body in the same position so that all of the marks lined up with the lights from the machines.  There I was, once again, lying flat on my back with both arms stretched above my head, my right side pushed up, my hips twisted, my head to the side and my chin up.  Why is it that I can goes days and even weeks without an itch, but the minute I am in a position I'm supposed to hold still in, everything itches.  Besides that, I began to have horrible back cramps.  The first one hurt so badly that I had to raise my right leg to relieve the pain causing them to have to readjust me again.  They tapped a box on my tummy so they could monitor my breathing.  There were two different machines above me moving up and down and several different arms on the sides of me.  All of the arms rotated 360 degrees completely around me.  Both men left the room before any of the equipment moved.  They would speak to me through a speaker telling me, "when you're ready, take a deep breath and hold it.................you can breath normally now."   They must have said that fifty times during the next hour.  In between, they would come in and out of the room adjusting my body more, moving the table more, making everything line up perfectly.  At one point, the cramp in my back became so intense, I had to have one of them come in the room and rub it or I was surely going to move to relieve the pain.

It was well over an hour before we were finished.  When they finished, they had to make even more marks and tape them as the previous ones didn't seem to line up exactly.  Now I had both black and red taped marks all over my torso totaling nine now I think.  When it was all over, my right arm was numb and swollen, my back was sore, and  I felt like I had been hit by a train.  I actually sat in the parking lot for fifteen minutes exhausted before I could drive.  It is hard to explain, but holding that difficult of a position makes your muscles all tense up.  Holding your muscles all over your body tight like that for over an hour is absolutely exhausting, and everything ends up being sore.  Imagine you get one of those night time cramps in your calve or foot that cause you to jump out of bed and stretch it out, but you have to lay perfectly still instead.  My body just hurt.  I drove to Preston's apartment, where I was kitty sitting for the night while he was away, and immediately laid down and fell asleep for an hour.

Since Friday, I've done a little more research on IMRT which has helped in my understanding of how the machines encircling me actually work as compared to 3D radiation.  It has also brought up more questions and a few more fears.  Honestly, lying on that table wasn't just physically painful--it was scary.  Having all of this equipment move all around you, come in close to you, move back out from you, and move in every direction is intimidating and scary.  It brings everything to reality as you realize these machines are going to be administering radiation into your body.  All I can say is I thought radiation was going to be laying still, but comfortably, on a table and being run through a CAT scan machine.  I was completely wrong.  So far I really don't like the two sessions I've gone through.  Kalib assured me that when they are actually running the program to administer the radiation, it should be about twenty minutes shorter than what we had just simulated.  I hope so.  I am going to try to do some back strengthening exercises as well as work on stretching my back to see if it will help relieve the soreness and cramping.  Last time I sang songs inside my head and tried to displace myself to being at Apache Lake just to keep my mind off my body and the intimidating machines as they encircled me.

I was lucky enough to get the treatments scheduled at the times I requested.  Monday treatment will be late in the afternoon so I can work in person here at my office until noon then head to Mesa.  Tuesday through Friday treatments will be early mornings so I can get back to my Aunt Mary's where we are staying and get to work.  Plus, Fridays I'll be on the road home early.  So most weeks we will be  staying in Mesa four nights and back home over the weekend for three nights.  If all goes as anticipated, my 30 treatments will be over Sept. 24th, which means our Celebration Day is Getting Closer.