Field trips!

How did the whole month slip away without a blog post?  Living and recovering, that's how.  Still feeling a swollen brain pretty much every day, despite the daily 4 mgs of steroids.  It typically manifests as a mild pressure behind my left eye and on my left ear.  I think it's affecting my hearing a tiny bit, but I only notice it when I wear headphones, so I'll report that to the docs tomorrow.   

Thinking is what makes me feel the worst, so I'm still working only half days and I still need some "eyes closed" time for a bit every afternoon.  I don't always sleep, but I do turn off most sensory inputs, the exception being that sometimes music or a podcast is nice, if I'm not sleepy, and usually listening to something makes me sleepy.  Often the lack of sleepiness is false and is simply my mind refusing to settle down.  Attending a weekly yoga class has been extremely helpful for both my mind and body.  Last week's meditation was on having no agenda.  No lists, no tasks, nothing that needs to be done.  Just surrender, let go, and have no agenda.  I've tried to carry that with me all week, and I've repeated the meditation on my own.  It's really nice.

I've had two weekends in a row with no agenda, huzzah!  Last weekend the girls and I skipped town and went to my parent's house, which is more like a retreat center:  woods, chickens, treehouse, massage chair, Nintendo Switch, comfy beds, games, and delicious food.  Huzzah!  The weather was glorious, and we brought our books and bikes.  A good time was had by all. 

A reading to E during a biking break. 

Playing games with Aunt Jacque!  We're the luckiest!  

This weekend was Memorial Day weekend, and we had no plans!  It was record-breaking heat in these parts, so we cooled off at the city pool, at my sister's lake house, and at the movie theater.  Again, a good time was had by all.   

Headed to Aunt Hilary's house! 

Mid-May, I organized a field trip for my daughter's girl scout troop to the Radiation Oncology Department.  The doctors, nurses, and specialists were wonderful to take an hour out of their free time to share their job with us one evening, and they truly did an amazing job!  They showed us images of tumors and told us how radiation is used to treat them.  They showed us the simulation room where they set up the patient with a pretend radiation machine to practice how it's all going to work.  They told us that some patients get little tattoos (I showed them mine from when I had full chest wall radiation to treat my inflammatory breast cancer), which are then used to line up the patient perfectly each time using lasers. They showed us the masks that some patients need to wear, instead of tattoos, to line up perfectly each time.  I had brought my mask, too, so we passed that around.  Then they took us in to the actual treatment room where the radiation is delivered--I didn't think we'd get to go in there!  The girls got to see the lasers that are used to line up the patients, and they got to peer into the machine that delivers the radiation.  The physicist told us that the walls of the room are made of concrete 6 feet thick so that the radiation doesn't hit the doctors and nurses while the patients are being treated.  He showed us how he uses a tank of water to calibrate the radiation machine every day; he uses water because the human body is mostly made up of water, so a tank of water simulates the human body.  One Girl Scout asked how much energy is in the radiation?  The doctor gave this analogy:  The electricity used to turn on the lights is roughly 100 volts.  The energy in UV light from the sun that gives you a sunburn is roughly 500 volts.  The energy in radiation used to treat someone's cancer is 16 million volts.  Holy cow!  That's a lot of energy!  Then of course the Girl Scouts wanted to know if radiation hurts.  The response from the professionals was that no, it doesn't hurt.  I suppose it's good that they didn't get into the side effects, like skin burns and fatigue and so forth. 

In the simulation room, with presentations by the Radiation Oncology Supervisor (purple shirt) and Dosimetrist (black and white shirt and sweater).

In the treatment room, with the physicist pointing into the radiation delivery machine, which can rotate around to pretty much any angle. 

Finally, we went into a conference room to have pizza and interview the doctor about his career path.  Dr. Radiation Oncologist was a nuclear physicist for 15 years before going to medical school.  He changed careers because funding for nuclear physicists was depleting at that time.  He said that to be a doctor you have to be motivated and to care for people. 

pizza with the Doc

The Doc was the only one who stayed and joined us for pizza, but I asked each professional to share their educational path with us before our time with them was through.  Dr. Medical Physicist has a PhD in physics and made jokes about how long he was in school.  Ms. Rad Onc Supervisor has a Bachelor's degree in nursing and a Master's degree in business administration.  Ms. Dosimetrist has a Bachelor's degree and after that went to a special 1-year program in dosimetry, which is kinda like a Master's degree in dosimetry.  So many wonderful career options!     

And I have one more big field trip this month:  tomorrow I'm headed to the University hospital down the road for a brain MRI and a visit with the neurosurgeon and a radiation oncologist (I won't be seeing the same one as last time--I'll be seeing a different one who is an expert in sterotactic radiosurgery and who was out of the office when I was there 7 weeks ago).  Spouse and dad are driving/joining me, and this time we're packing a lunch because last time we didn't have time for a delicious meal in our favorite town to eat.  Dad usually surprises us with a baked good, but it's been so hot this weekend that I wouldn't begrudge him if he decided not to turn on his oven.  We shall see!  Meanwhile, I am trying so hard not to be nervous, but I am quite nervous.  Either everything is going to be perfectly fine, and Lloyd will have resumed his transition into Pearl thanks to the daily 4 mgs of steroids, or everything will not be fine and Lloyd will again provide evidence that he's been growing.  I'm sure it's not going to be perfectly black and white like this, but the binary outcome seems more possible now than with some of the other crud I've been through.  I supposed "unchanged; come back in 6 weeks" is another possibility that I would welcome. 

Instead of terror, I've been trying to surrender to my body's healing processes, and to not have any agenda associated with tomorrow's scan.  Deep breaths, with no agenda.  It will be what it will be, and I'll proceed with my glorious life regardless.  Because I have strength, I am strength.  I have peace, I am peace.  I have hope, I am hope.  And I have the ability to rest.  Right after I take a shower.  Namaste.