One Week Down, Five and a Half to Go.........

8/18/13--Sunday-Day 309--So Far Radiation Isn't Bothersome, Just Noticeable.

It's Sunday following my first week of radiation and we are back home on a 48 hour furlough.  Yesterday was the first home game of the Cardinal Football Season so we stayed in Mesa to attend Saturday's game against the Cowboys, which, by the way, WE WON!  We have been season ticket holders for eighteen years now and used to really look forward to our trips to Phoenix as protected time we guaranteed with each other.  This weekend, however, staying in Mesa the extra day only delayed our escape back home.

The first week of radiation has gone well.  On Monday, I had a late afternoon appointment so I worked at the office until noon when Greg, Brooklyn and I headed for Mesa.  The evening before, we loaded the car with everything we figured we needed to set up offices at my Aunt Mary's house for the next six weeks.  Greg and I both had super busy work weeks ahead plus, Brooklyn would be flying out on Wednesday morning, I had my four-month gynecology oncologist exam, and we were starting radiation for real.  It was going to be a challenging week, so I was glad we arrived in Mesa with enough time to unload and settle in before heading to the Cancer Center.

I was not looking forward to going in for radiation as the first two simulation sessions had been challenging.  When we arrived at the Cancer Center, Greg and Brooklyn waited in the waiting area as Robbie, the receptionist, greeted me and pushed the button for the automatic door to open.  I went down the hallway and into the dressing room where I put on my gown and waited.  A young lady came to get me this time, and escorted me into the control room where Kaleb asked me to verify my name and birth date.  The three of us then proceeded into the radiation room.  As I went through the vault door, I realized it really wasn't three feet thick after all, but maybe half that size.  And the machine, it didn't have the large CAT scan ring as I had remembered, nor did it have near as many intimidating arms.  In fact, it already looked familiar and much less ominous.

I climbed onto my body mold on the table hoping the back stretches I had started doing were going to keep me from cramping. With my gown pulled down, both arms stretched above my head in arm cradles, and my back in the body mold, Kaleb and his assistant pushed the table up under the machine then adjusted my body until the marks on my skin lined up perfectly with lights being shot from around the room.  Bright red lights with patterns shined on me from the ceiling on both sides of the room and neon green laser-looking lines helped position my body to the exact spot.   When it was just right, Kaleb and his helper both left the room.

I closed my eyes to keep the bright red light out and to relax hoping to keep the cramps at bay.  I focused on staying calm by picturing myself on the shore of Apache Lake at sunset relaxing.  As machines started to move, I opened my eyes.  Though my head was turned sideways to the left, I could see from the corner of my eye that above me was the round machine with metal plates behind glass.  From my research, I knew this was the multi-leaf collimator which is what is used to deliver the radiation and what the big deal behind IMRT is.  As the radiation is delivered, these metal leaves are programed to change shape directing the radiation so higher doses can be precisely delivered to certain areas while minimizing radiation exposure to healthy areas.  On the sides of me, two large flat panel screens moved in close on each side.  These were silver, but shaped like super large flat screen computer monitors.  "When you're ready, take a deep breath and hold it," Kaleb said through the speakers.  As I held my breath, I heard a quiet buzzing noise for about five seconds while the monitors took the x-ray images. "You can breath now," Kaleb said as the two screens and the large round machine, automatically rotated to the right 90 degrees so one screen was now above me and one beneath.  As I held my deep breath once again, more x-rays were taken.  Then there was a long pause.  The table jerked ever so slightly moving probably a millimeter at a time.  I held my breath several more times as more adjustments were made. Soon the screens rotated to the left moving beyond their starting position and pulled away a bit while the collimator moved in closer.  The collimator was large and round.  Behind a glass were what looks like the edges of a bunch of metal plates.  It reminded me of those metal toys that look like tons of small nails and you put your hand on it and the metal nails form a three dimensional shape around your hand.  The collimator sort of looked like that.  Certain plates were opened creating an odd looking shape.

The collimator was now positioned to my left at a 45 degree angle pointing toward the target, my right breast.  After being instructed, I took a deep breath and the collimator began rotating to the right.  The entire machine slowly rotated around my body approaching its 180 degree point underneath me.  While it was moving, I held my breath as long as I could, then gasped for air.  As I gasped for a breath, the machine stopped immediately, just as Kaleb had told me it would.  Through the speaker, he assured me it was okay, instructed me to catch my breath, and when I was ready, to take a deep breath and hold it again so we could finish.  I did and the final few seconds of the radiation beam continued while the machine found its resting place just underneath my right side now.  After a few minutes, it was time to start again.  I took another deep breath and the machine began its journey back around to the top of me. As the collimator moved around my body, the metal leaves moved creating different shapes directing the radiation to certain parts of my body while protecting other parts.  I closed my eyes trying to focus on keeping my breath.  Though I knew it was okay not to hold my breath for the entire rotation, it was now a challenge.  I pretended I was at Apache Lake swimming and wanted to make it under the boat.  That helped.  It kept my mind busy and just as I was about to lose my breath, the machine stopped back in its starting position and I heard Kaleb say, "You can breath now.  That's it.  Stay still until we come in."  And that was it.  It was over.  My first radiation was completed.

As they pulled me out from under the machine, my right arm was hurting where it is numb from the surgery, but that was it.  I wasn't nearly as exhausted, I had no back cramps, and the treatment seemed much shorter.  Wow, I was pleasantly surprised, encouraged, and optimistic.  "I can do this!" I said to Kaleb.  "This is much easier than it was on Friday!"  He laughed, "Easy peesy, I told you."  The whole process had taken about forty minutes.  That was MUCH BETTER than the hour plus the practice sessions had taken.  I returned to the dressing room, got dressed, and, with a much brighter attitude, headed out to where Greg and Brooklyn were waiting.  Greg asked how it went and I told him my right side seemed warm, and I swear I felt the tingling of the energy which had just been forced inside of me, but all in all, I was encouraged that this whole process from start to finish would be just under an hour.

Tuesday's, Wednesday's, and Thursday's treatments went pretty much the same.  Each day I learned a little more as I came prepared with questions for Kaleb.  He's been great, patiently explaining how things work and providing the answers for all of my questions.

On Wednesday, Preston took Brooklyn to the airport to return to Idaho.  We weren't able to go because we had an appointment with Dr. Matt, my gynecologist oncologist that morning.  My tumor markers were down from 19 to 17, which is great.  Anything under 36 is good, so all looks good on that part.

Thursdays after treatment, we met with Dr. Grade, something we will now do every Thursday throughout the treatment.  I saved my medical questions for her.  One thing that had been bothering me was having multiple x-rays done every single day.  Dentist only x-ray your teeth once a year to minimize your exposure to radiation, yet I was having multiple x-rays each day for 30 days?  Dr. Grade assured me that the x-ray was a much smaller dosage which is also why they didn't cover the other parts of my body with a led apron like they do at the dentist.  She said all of the imaging is taken into account when calculating the total amount of radiation exposure I am receiving.  Just like with chemo, you have to trust that the doctors know what they are doing when they are prescribing treatment.  I had to trust that all of the radiation I was receiving was part of the prescribed plan.

On Friday, I learned it was double imaging day.  Once a week, they take an extra set of images to make sure the positioning of my body and the delivery of the radiation beams are still in line.  After the two x-rays are taken with the screens to my sides and then on top and bottom, for the extra x-ray or imaging, now a screen makes a complete arch circling around me while I hold my breath, sort of like a CAT scan you can see moving.  Kaleb said this is just an extra precaution to make sure everything remains in line with the calculations of the IMRT.

So that's the story of radiation so far.  We have started applying the aloe vera as instructed by Dr. Grade.  The only bad side effect so far is my lymphedema in my right hand and arm has really flared up.  My hand is so swollen you can't see my knuckles and it is really aching, and this morning, my forearm was covered with a rash of light red dots.  We will return to Mesa tomorrow after I work at the office for half the day as our Monday radiation appoints are in the late afternoons.  Tuesdays through Fridays I will have morning appointments starting this week, so that will help us settle better into a routine.  This past week my appointments were all in the afternoons because some of the machines were down for mandatory maintenance and they had to fit everyone in on the remaining machines.  As for the actual treatments, being someone who is very in-tune with energy and energy fields, I truly believe I feel the radiation for quite some time after each treatment.  It's like a crazy, bouncy, excited energy field bouncing around on that side of my body.  But all in all, So Far Radiation Isn't Bothersome, Just Noticeable.

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.