“Here’s a gown,” the technician handed me a standard hospital gown. “Put it on with the opening to the back.” I took the gown from her but asked,
“Didn’t you just tell me that I will be topless while on the table? Seriously -I don’t need this. I lost any modesty as far as my chest goes like a year ago.” I tried to hand the gown back to her but she insisted I put it on while all the technicians left the room.
I rolled my eyes and started unbuttoning my shirt. It was amusing to watch the techs all run from the room. The room itself was quite large. The main attraction was a machine that looked a lot like the MRI machine I was just in last week complete with the moving table the patient lies on and the big donut shape the tables moves into. Only this room had cool red laser lines everywhere as well.
When the ladies (and the one male doctor that would be supervising my treatment) came back in to the room, the was suddenly a flurry of activity. Two of the techs laid me on the table and the next thing I knew, the pointless gown was taken off me and I was being moved around and held in place while the blue bag beneath me began to fill with some Styrofoam substance that would make sure I was held in place and not able to move. My left arm was raised above my head so my hand touched the top of my head. A mold is made of each person’s body so that every time you come in for your treatment. you are lying in the same place and position.
I was told to “hold still” and we practiced my “breath & hold” technique that is designed to fill my lungs with air to push my chest wall away from my heart and lungs as much as possible so they are not hit by the radiation beams.
Wow -this position is really uncomfortable. I asked the tech if other ladies complained about their arm going numb.
“Oh yeah. Every time. You arm WILL go numb. Sorry, but you just have to deal with it till we are done.” She handed me a little red rubber ball to squeeze. Apparently it helps keep some blood flowing to your fingers.
My head was held to the side looking to my right so I couldn’t see just how many techs were in the room but judging at the number of hands touching me and voices I heard, I’m guessing there were at least 5 people in the room including my doctor. My feet were tied together and someone laid a warm towel over my chest. It’s a damn good thing that I don’t have issues being held down!
I was told that the table would move back and forth while the machine scanned me. Then everyone left the room and I was told thru a speaker to breath and hold while the machine did it’s thing. After a few trips through the donut, the techs all came back into the room, the now cooled towel was removed and people started marking on my body with markers. Weirdly -I couldn’t feel most of these marks since they were on my chest that no longer has any nerve endings.
By this time my arm hurt so bad that no amount of ball squeezing helped. I tried to keep my tone light when I asked if they were almost done and then tried not to cry when I was told they were only halfway finished. I tried to wriggle my arm a bit to see if I could find a way to let a little blood back in. I mean -my fingers were getting cold for Pete’s sake! But one of the techs sternly told me not to move. Dammit.
They finished marking me and left again. Another few trips thru the donut. I tried to concentrate on the holding of my breath instead of the vise like grip on my shoulder. I wondered what was actually pinching the veins closed. I wondered how long my fingers could go without blood before they started to die. I wondered how many other ladies wanted to kill the techs by the time this fool mapping was done. At least it was my left arm. My right arm still worked and could punch someone.
The next time the techs came in, they added a few more marks then applied stickers on top of them all. These stickers were mostly waterproof and pretty darn sticky so I could still shower with them on. Just no baths or swimming during treatment. I wondered if I would even be able to lift my damn arm to wash my hair anymore if they didn’t hurry the hell up.
(Yah on the washing the hair, BTW! It may be yucky short still but at least it HAVE hair again!!)
They finally finished up their torture session and laid the hospital gown back on me. Really? Then told me I could put my arm and down and sit up. Thank GOD!!
But I couldn’t actually move my arm by then. The nurse laughed at my grunt and kindly helped me ever so slowly put my arm down. She wisely knew it would hurt to move it. I felt the blood blessedly rush back into my arm and down into my fingers. I rotated my shoulder to help it along then suddenly BAM the pricklies started. Owowowow!
I was glad to have the distraction of putting my shirt back on. By this time the techs gave up the pretense of giving me privacy. The main tech gave me instructions on caring for the stickers while I tried to get my stiff fingers to button my shirt. No way was I going to be able to work the tiny clasp on my necklace so I put it in my pocket (and yes, I found it in the dryer this morning. Sigh)
I was told my treatments would start next Tuesday at 12:30 and was given a fast track card for checking in and parking instructions. Apparently my first treatment would be about 45 mins so they can fine tune the machine but every treatment thereafter would only take 10-15 mins.
That was all yesterday.
Today I got a call from Dr Lin telling me that we will wait another week before I start treatment. What I didn’t tell you about was the lengthy conversation we had before the mapping. Apparently those three little lymph nodes were causing everyone concern -especially her. Here’s the short recap version:
If those nodes are NOT cancerous, then treatment goes as planned. 6 weeks of radiation that targets all the typical areas.
If the nodes ARE cancerous, then we need to remap in order to target them as well and treatment will likely be shortened. At first this didn’t make sense to me till she said the “conventional” treatment plan for metastatic cancer is a quick blast with radiation then back on to chemo.
I informed her that I doubted I would go back on chemo. My oncologist and I already discussed that and even he agreed. I’ve already done the most aggressive regiment they have so it won’t be very effective to do it again. We are both hoping that my TNBC is one that responds better to radiation than chemo. But Dr Lin felt that my insurance might have an issue with the “unconventional” treatment plan without knowing FOR SURE if those lymph nodes were cancerous or not.
So now I have a biopsy scheduled for next Wednesday so we can know for sure. I am not thrilled. There are many who believe that biopsies can actually spread the cancer -after all, you are breaking open an encapsulated tumor in order to collect cells from it. Considering that Larry’s son grew right next to him, I tend to follow that belief. However, a quick Google search reveals numerous medical studies that assure me biopsies are safe and unlikely to spread cancer. Hmm
This biopsy will be done as an EBUS (Endobronchial Ultrasound Bronchoscopy) which means I will be put under either light or full general sedation while the doctor puts tubes down my throat with an ultrasound camera that will help him find the nodes and take a sample via a fine needle aspiration. It should take a few days to get the results. At that time, Dr Lin will decide what the best course of treatment is.
So radiation gets put off yet another week. Sigh. The good news is that she is more encouraged that these nodes will be negative now that she’s gotten a second opinion from her radiologist who agreed that they are more likely lighting up as a result of healing.