Tuesday, May 29, 2018

Lloyd might be Pearl

"Grossly stable size of the enhancing lesion centered within the right caudate. No evidence of disease progression."

Medicine is not science.  I feel like most of my questions today went unanswered, except for the most important one:  Lloyd is not bigger.  Huzzah!  Lloyd is also not smaller, and Dr. SRS Expert, as I'm going to call my University Dr. Radiation Oncologist (who was very knowledgeable and had terrific bedside manners, by the way.  Glad to have him on team hbomb!), said that Lloyd might not get any smaller.  When I asked about the February scan, when Lloyd WAS smaller, he had no explanation.  When I asked if it was normal for tumors treated with SRS treatment to show this kind of dynamism as they resolve, Dr. SRS Expert said that to give it to me straight, no it's not normal.  I reminded him of the different steroid doses associated with each of my scans; he did not comment.  I would imagine that MRI frequency would also play a role in visualizing tumor dynamism in patients.  Lots of variables here, and I'm only an N of 1.  Not going to focus on that awesome February scan, I guess. 

With Lloyd being no smaller, and with the brain swelling still being there, I wondered out loud if my steroid dose might need to go up a little bit?  If the goal is to reduce Lloyd and swelling?  In fact, the opposite is true:  Dr. SRS Expert wants me to start the steroid step-down again.  This gets merely a baby huzzah, not a big huzzah, because I am apprehensive about how this will make me feel.  My spouse and dad are thinking that I'll feel much better to be off the steroids.  Of course eventually that will be true, but I don't understand how that can be true in the immediate future, because I still have head pressure and occasional headaches with my current steroid dose, and the only solution for those has been the steroids (and naps).  I asked Dr. SRS Expert if there's anything else I could be doing to help with the healing process, and he just smiled really big and said, what do you mean?  Then he turned away and pointed at something on the screen, and I don't really remember what he said.  What I meant was, once the steroids are gone, how are we going to control the swelling/pressure in my head?  What can I do?  He said, if my left arm starts to tingle, give him a call.  Ugh!  It seems like there should be something in between where I'm at now and presenting with neurological symptoms.

Then it started to crystallize for me that perhaps Dr. SRS Expert thinks I'm nearing the end of healing Lloyd, but that "healed" might continue to include brain swelling.  So, I asked if the swelling would ever go away?  And the answer was a resounding maybe yes and maybe no.  Oh my, that rattled me.  I had been operating under the assumption that the completion of healing would be turning Lloyd into Pearl AND the resolution of brain swelling.  Boy, if the swelling doesn't ever go away, that'll be a big bummer.  I suppose I'll get used to it, and learn how to function through it.  Well, I'm not giving up my healing goal of swelling resolution yet.  I'd like to believe that it'll go away once Lloyd is truly done becoming Pearl.

We also met with Dr. Neurosurgeon today, and he was again reassuring in regards to his ability to perform surgery on Lloyd should the need arise.  He was glad that I was getting Dr. SRS Expert's opinion.  I have no further appointments with Dr. Neurosurgeon at this time, huzzah!

The doctors continue to seem surprised that I am not having any neurological symptoms.  I continue to be delighted that I am not having any neurological symptoms.  Two different physicians gave me neurological tests today (touch finger to nose, now touch his finger, back to nose, etc.), both of which I passed with flying colors.

I will have another MRI and see Dr. SRS Expert in two months.  That'll be one month of steroid step-down (Dr. SRS Expert gave me a specific steroid step-down protocol that'll take one month), and one month of no steroids.  Fingers crossed!   

Thank you all for your love and support!           

Monday, May 28, 2018

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. 

Sunday, May 6, 2018

PET scan all clear!

Hope I didn't keep you waiting too long!  I haven't felt like sitting in front of a screen, what with this glorious springtime weather going on.  

The PET scan was all clear!  "No evidence of suspicious regions of increased metabolic activity to suggest malignancy or metastasis."  Yay!  Also noted is that they can't resolve the brain at all because it lights up too brightly, so we await the brain MRI on May 29th for further updates on the Lloyd to Pearl conversion.  

At my appointment on Friday I told Dr. Oncologist about the persistent headaches (pain level 2-3 on the 10-point scale, so not terrible but annoying). I asked if they meant I should increase my steroid dose, or if I could take Tylenol for them or something?  She didn't want me increasing the steroids, she did say I could try Tylenol, and she also suggested massage.  Oooo la la!  Guess I need to be making a massage appointment.  I won't argue with that suggestion!  

SO, my dad went to the store and picked up some extra-strength Tylenol, and I've been taking it all weekend.  I'm happy to report that I am indeed feeling much better!  Takes the pain down to a 1, which is merely a sensation.  I still have the feeling of pressure, but that's not surprising.  The best thing about the Tylenol is that it improves the quality of my resting and sleeping.  By reducing the pain I'm finding that I'm less preoccupied with or worried about Lloyd, so I can fall asleep more readily.  Very nice indeed! 

Despite the headaches being largely under control this weekend, my brain still strongly urged for naps.  But I was able to balance the rest time (including a nap in the hammock, for the win!) with all sorts of fun things--farmer's market with the family, bike shopping for an appropriately sized bike for my oldest (didn't find one yet, but one bike shop is expecting a shipment of 24" bikes on Tuesday so we're going back there later in the week), summer clothes shopping for everyone, grilling, backyard fire-pit fire and s'mores, badminton (of course), bike ride practice with my youngest, board games with ourselves and with friends, laundry, yoga, and I watched a movie.  I rented "I, Tonya" on Amazon.  It was a really well-done movie, but such a sad story!  Poor Tonya Harding.     

I hope that you enjoyed life this weekend as much as I did, if not more!