Vacation, "DePORTation" and Preparing for Radiation......

7/31/13--Wednesday--Day 291--The Last Mile

Today was "dePORTation" day--the day they removed my port; in addition, it was Radiation Mapping day--the day they took the scans and all the measurement to develop my radiation plan.  And while I've been anxiously awaiting this day, tonight I'm a mixed up jumble of emotions.  Part of it, I'm sure, is from the anesthesia, and part of it is from the anxiety that comes with starting the next new leg of the race.

We purposely delayed the radiation mapping until after our California trip so I didn't have to go on vacation with tape markers on me.  I was glad.  We had a wonderful, and much needed, family vacation in California.  We left the afternoon of Thursday, Aug. 18th and returned that Monday.  So while it was a short trip, it was perfect.  After picking up Preston and Yuri, Preston's girlfriend, in Phoenix, we made it to our hotel in Anaheim by 10 PM.  Brooklyn flew in and took the shuttle to the hotel.  Though the airlines lost her luggage, we managed the night and the first day knowing it would probably show up, which it did by Friday evening.  We slept in Friday morning and made it to Disneyland around 10 AM taking advantage of the hotel shuttle.  I was hoping to walk through the park, but after walking from the shuttle stop to the main gate, it was obvious I didn't have the strength or endurance to walk.  It was frustrating, however, a few days before the trip, Brooklyn had injured her ankle bad enough to have to visit Urgent Care.  The doctor told her she had a severe sprang which ran up into her calf, and he instructed her not to walk more than absolutely necessary.  He gave her a brace but recommended a wheelchair in the parks, so we decided Brooklyn and I both would rent wheelchairs.  While it was work for Greg and Preston to push us, they did end up benefiting as I also obtained a pass from guest services which kept us from waiting in lines.  I was so grateful that Disney was willing to help with the pass as I would have been miserable without it.  While I had a good time being there, my endurance was super low.  I had just finished week two after my final chemo, which is the week with the most fatigue.  Without the pass, I definitely would not have been able to enjoy much of the park at all.  In fact, before sunset, I was exhausted.  And, believe it or not, it was cold in July, and since I am always cold anyway, I was chilled.  Greg saw the exhaustion in my face and decided it was time to be done for the day.  Yuri and Preston stayed in the park while Greg maneuvered two of us in wheelchairs to the front gate.  I pushed Brooklyn while Greg pushed me, so technically Greg pushed us both while I steered Brooklyn.  We were quite the site but we managed.  Saturday went about the same as we visited California Adventure followed by Sunday at Universal Studios.  Each park let us skip the lines so we were able to get through the rides before my endurance gave out.  By Sunday night I was truly exhausted and super glad we were heading home Monday morning.  And, to make the trip even better, Brooklyn was driving home with us as she found a way to come home for another four weeks.  Of course that meant five of us riding home in the Prius, but it was well worth it.  It had been a much needed vacation, our first since New York in October when we first learned I had cancer.  In fact, as we drove to Phoenix, we realized it was our first trip to Mesa for something other than cancer.  It was really nice to get away.

After coming home Monday, we went back to Mesa Thursday for my final visit with Dr. Byrum, my breast surgeon.  After six months, her job is finished and she turns cases over to medical oncologists, Dr. C. in my case.  Dr. Byrum did have one more duty--to remove my port.  She told me we could either do it before I started radiation or it would have to wait until after radiation was over.  I definitely wanted it out before radiation started so we began working on scheduling it for the next week.  After several attempts, we were finally able to schedule surgery to remove my port in the morning today, and my radiation mapping appointment for the afternoon today.

We stayed at my Aunt Mary's last night since we had to be at the hospital at 6 AM this morning.  After checking in at Banner Hospital, the same place I had my other surgeries, we made our way up to the very familiar surgical area on the second floor.  Once again, we were cared for by outstanding personnel.  I can't tell you how wonderful the staff of this hospital is and always has been.  They show genuine care and concern for their patients and families.  Despite knowing I was in good hands and that this was a simple procedure, I couldn't help from being nervous.  It was weird.  There was nothing to be nervous about.  This was a simple procedure.  But this was the fourth time I had been in the surgery area in eight months and I guess it was getting to me a little bit.

Bonnie, my nurse, had a little difficulty finding my vein for my IV.  That was hard to believe because I have always had great veins.  That's one reason giving blood has always been super easy.  But she said chemotherapy can be very hard on veins and make them hard to access.  Great--another great perk of chemo.  She was able to access a vein and start the IV.  Then Jeremy for anesthesiology came in.  He was super nice and explained he would only be putting me into a twilight sleep rather than under general anesthesia, which was good.  I told him just make sure I didn't wake up.  He gave me what he called "margaritas for breakfast" which made my nervousness suddenly disappear as he rolled me into the surgery room.  I was feeling really good and much more relaxed as I visited with Dr. Bryum and Melissa, her assistant before Jeremy gave me the stronger medicine which put me to sleep.  In a flash I was back awake and rolling into the recovery room.  There were no stitches this time, only glue.  That is interesting.  Hopefully that will help the scar heal nicer.  In an hour or so we were released and headed to IHOP for some breakfast.

 When we returned to the cancer center, I was super tired falling asleep on Greg's shoulder as we waited for the appointment in radiation.  Sue, Dr. Grade's assistant, saw us and took us back into an exam room early.  She let me lay on the table, covered me in warm blankets, and turned the bright lights off while we waited.  I immediately fell asleep for what seemed like an hour.  When she came back in, I felt so much better.  She talked to us about radiation and some of the potential side effects.  As she explained things, it actually seemed really easy.  I guess in comparison to what I've been through, it is really easy.  She dispelled a lot of the myths we had heard, so that was a relief.  She also explained how they figure out how much radiation to give a person.  The mapping they would be doing today would give them measurements on my body and the organs in it through a CAT scan.  The computer would calculate the amount of radiation my body would need to radiate the breast tissue without penetrating my other organs like my lungs.  It would then divide that amount of radiation up into 30 fractional segments.  This way each treatment would give me one of those fractional dosages.  In the end, I would have all of the prescribed radiation, but given in safe doses.

After we discussed radiation, Sue took me back to change into a gown and wait for the technician.  My wait was short before I was led into the room with the CAT scan machine.  First they started by placing me on a sort of beanbag foam bead filled pad which was on top of the hard bench of the CAT scan machine.  They positioned my right arm above my head and held the pad close around my sides while another machine began sucking the air out of the pad.  This formed the foam beads in the pad around my body creating a hard mold of my body.  This is what they would use each time I come in to place my body in the same position each time.  At that point, Dr. Grade and another technician came in.  As they talked about the treatment, I asked about the mammary gland tumor that was there on the PET scan and would the radiation cover that area.  She assured me it would.  Then Dr. Grade mentioned a new type of radiation treatment and if my insurance would approve it, it would take half the time.  At first I thought that meant less than six weeks, but then she clarified and said no, it meant less time on the table during each treatment.  The tech told me with the areas they were having to cover on me, the breast, the sentinel lymph area, the axillary lymph area and the mammary gland area, each treatment would take about an hour on the table. If my insurance would approve the new method, it would only be about 20 minutes on the table.  They checked with my insurance and the new method was approved so they removed the mold they had just made, put both of my arms above my head, and made a new mold.  This was followed by placing wires in all the areas they were targeting.  And finally they moving me through the CAT scan machine multiple times as they took measurements.

The simulation was really challenging.  It was hard to keep both of my arms up, my head turned sideways with my chin up, my right side propped up, and hold my breath on and off while maintaining that position for almost an hour.  By the time we were finished, my neck, arms, and back were screaming.  When we were almost finished, the tech used permanent marker and made marks in about five places then covered them with waterproof tape.  This is what they do instead of tattooing.  The tape will stay on the whole six weeks, so that will be interesting.   If the marks come off, we have to go through this whole mapping process again, which wouldn't be good.  While it is waterproof tape and can hold up to showers, I'm not allowed to swim anymore or soak in water.  Plus, the chlorine or salt in pools will irritate the skin while getting radiation, so I guess my summer of swimming is over.  The whole process took about 2 and a half hours and then we headed home.

I was glad my port was out, but it was hurting by the time we were driving home.  I was glad we were starting the radiation process, as it is the final leg of the race, but the mapping had been harder to endure than I expected.  I have a very high pain tolerance, but laying there with my arms stretched out above my head, my head turned, and my chin up being perfectly still for that long was painful.  My arms and back ached and my right arm was swollen.  Sue had confirmed what we had heard from Dr. Byrum the week before.  The radiation was most likely going to make my lymphedema worse and it would most likely be permanent.  My arm was swollen from the lymphedema already and by the time the mapping was done, it was even more swollen.  These taped marks on my body for six weeks seemed odd and a little scary.  I hope I can keep them on.  We were also told that they really usually take five to ten business days to develop the radiation plan.  Plus, Dr. Grade said the new method is a lot more work up front, but worth it for the patient.  Now I don't know if they will be ready for me to start next Tuesday.  Once the plan is ready, they have the MD Anderson in Houston review it and approve it.  After that they will call me to start, so honestly, at this point, I have no idea when I will start, other than sometime in the next two weeks.  Okay, so that's it for the complaining.  In reality, everything today was good.  My port is out, my radiation plan has been started, and we are on our way to being finished.  Once I start radiation, I will only have six weeks of treatment left and my life will be back to semi-normal.  I am so grateful for the quality of care I continue to receive, for the support from friends and family I continue to have, and for the progress I continue to make.  And while emotionally I sometimes feel like I am on a roller coaster, I am glad we are finally getting to The Last Mile of this race.