Tuesday, August 21 – No Radiation for you

The Percocet that Dr. Endicott prescribed did not help much.  It was worth a try.  My underarm continues to grow worse.  It is now a burnt mess.  It feels like it should be charred down to the bone.  It just aches and anything touching it makes that ache worse.  I slept on and off all day Friday and Saturday.  I just cannot seem to sleep enough now.  However, sleeping is constantly interrupted by the pain.  For the most part, I can ignore the pain during the day, but at night when I am still and trying to sleep the pain is the dominating factor that controls everything; breathing, position, comfort, relaxation, the brain’s ability to shut down, stress, you name it the aching throb of my underarm and breast tissue is in command.

With one day off on Friday, I had hoped that the pain would ease a bit and allow me to sleep better.  Instead, I found that I was adding Tylenol more and more often to my night.  Sorry liver, it is just for a few more weeks, I promise.  Sunday we were going to celebrate Jordon and Kelly’s engagement, but alas, there were people who did not feel well, so the celebration was put off another week.  It turned out to be Jordon and my friend Linda who came over for dinner.  Linda brought some of the pink dye she had purchased to dye her hair.  We experimented on my head.  All said and done, I think we dyed my scalp more than we dyed my hair….

Monday I was back at Radiation Oncology by 1PM, as we thought I would go through the confirmation of my measurements for the boost, and I would receive my last full breast dose of radiation.  Then I would be ready to go on Tuesday with the start of the five days of boost to the bottom half of my breast.  Nope, Dr. Endicott was not in on Monday, and they had a 1PM spot for me today, to validate the new start and stop points based on my measurements to radiate the bottom half of my breast.

We got there today before 1PM as we normally arrive early.  I was shortly called back to change and from there was called back to the exam room.  Art was there with his glasses today so he could read the tattoo.  He was telling me he did not take them home and really missed not having them there last night when he was trying to read something.  I got up on the table and we were having a hard time getting me into the right position.  Art kept telling me to scooch up.  I finally told him if I scooched up anymore my head would no longer be in the head cradle.  They looked at it; it was in the wrong spot to begin with.  Oops.  Once we moved the cradle up a spot, I was then in the correct general vicinity on the table to get me in the right grid location with a few little tweaks.

From there they turned out the lights and moved the table to the new placement location for the boost and turned on the light inside the linear accelerator to shine on me where the new path of radiation would go based on the new coordinates created by Dr. Endicott 6 weeks ago.  It did not look right.  Art said the radiation was starting too far to the left and ending before it hit the right bottom quadrant of my breast.  He said it looked off, weird.  I did say that my boob is now a weird shape, was that the issue?  That was when he confessed the beam was not lining up where they thought is should be, and they were getting Dr. Endicott to come in and see what they were seeing.

She came in, first checked out today’s tattoo, like it, and then got to business, nope; the coordinates were off, very off.  No radiation today.  She looked at my armpit where the red has turned to brown and I have small little cracks of raw pink showing through.  She apologized but today there would be no radiation.  She said she would have to go back and rework the new coordinates for the boost and tomorrow they would try again.  I had no problem with this.  I would rather it be right, than contribute to more unnecessary pain.  They also told me that the armpit would continue to get worse for about a week before it starts to get better.  Oh the joy.

So tomorrow we go back early again so they can once again confirm the coordinates line up with the treatment plan they are looking to execute, and if it all lines up, I’ll get that first boost.  I still have to get five boosts to the bottom half of my breast, so this will now roll into next week.  I just wish, hope, pray that the fatigue will start to pass quickly as this whole pain and fatigue is getting old quickly.

On a bright note, we still get to celebrate the engagement of my middle child to his wonderful fiancée.  We love Kelly and we are over the moon that she agreed to marry our boy.  We are also planning a trip to my parent’s house up north.  It will be a long weekend to celebrate the end of a year of cancer.  Then they will be coming down here for a long weekend to celebrate birthdays.  So much celebrating to be done.  I can hardly wait.  Just as I can hardly wait for all the pain and fatigue to be a thing of the past.

I know I have not mentioned it lately, but the neuropathy continues.  I have been taking 300 mg of Gabapentin three times a day now.  I still feel it in my feet and my hands.  I learned about an online education workshops offered by CancerCare (I am adding them to my list of links available on the side).  There was a flyer at Cancer Support Community advising of an upcoming phone in workshop on Coping with Metastatic Triple Negative Breast Cancer.  Not that I have metastatic BC, but I have an interest in learning about it in the future.  This led me to their website where previously offered workshops are archived for listening to at your leisure.  I browsed the catalog and listened to one on dealing with the long term effects of neuropathy.

I learned it could take years for the neuropathy to improve, if it ever does.  I also learned that a stiff bottomed rocker shoe is actually, what I should be wearing as the neuropathy can also lead to muscle aches and pains and the podiatrist on the panel recommended this type of shoe for all patients with neuropathy, no matter the severity.  This would explain why my Birkenstock’s are the most comfortable shoe I have worn so far.  Stiff sole, not a lot of pressure on my feet.  Only thing I need to add as a slight rocker sole.  Looks like I need to do some shopping, again.

Life is looking forward to the celebration

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