Friday, November 30, 2018

Over halfway done!

Today will be my 8th of 10 whole-brain radiation treatments.  Just two more to go next week! 

I'm holding up very well, I'd say.  My primary complaints are 1) enormous sleepiness, weariness, and a drained feeling all the time, but it's not the same as the bone-crushing fatigue of chemo so I'll take it; 2) headaches, head pressure, and a fullness inside my left ear; 3) nausea, but I can eat through it, and it is related to the headaches.  If I can reduce the headache, with either sleep or extra-strength Tylenol (the best solutions for me so far), the nausea goes away almost completely.   

Yesterday I saw Dr. Radiation Oncologist, and after I gave him this report he said that he thinks it's the brain-protection drug (memantine) that is causing the profound sleepiness (I've started to refer to myself as "clinically weary") rather than the radiation treatment.  He said that basically, he's sedating me, and that once we're done ramping up to the targeted dose I will probably be able to learn how to work with the side effect.  That's hopeful!  Right now it is overwhelming, and sedated is a good word for how I feel.  I seem to sleep all the time!  And when I'm not sleeping, I'm thinking about how badly I want to sleep, and I feel grumpy quite a bit.  It's not cool.  I don't like being grumpy! 

I'm less grumpy when I'm playing games with the kids.  Perhaps it's because the noise is more organized, less cacophony?  So far we've played Blokus, Concept, Candyland, Tsuro, and the card game War, most of which are excellent puzzle games and of not terribly lengthy duration. 

No hair has fallen out yet.  Dr. Rad Onc said it might be another week before that starts to happen, and even when it does it might be a reverse mohawk on my head and not an all-over baldness situation.  Lol!  So I guess I won't just let the kids shave my head for me, as I was planning to do, because I don't want them to shave it off if I'm not going to lose it all.  Here is a link to the last time I lost my hair, and I let the girls help me with a preemptive haircut.  They were so little!!  They still remember doing this and would LOVE another opportunity.  ;) 

My meditation game has gotten weak, guys, I think due to the clinical sleepiness.  And giving in to the sleepiness feels soooo much better than powering through.  Two nurses now, unprompted, have reminded me to listen to my body, with one saying it's okay to just be tired and lay on the couch, so I'm trying to honor their orders.  And I must admit that I feel much better listening to my body than powering through, so thank you to all of my family, friends, and co-workers for enabling my listening and allowing me to quit powering.   

Shout-out to my mom who is here taking care of my family and me, and we are so grateful!  She's been accompanying me to my innumerable appointments, and she has completely taken over my morning-parent duties of breakfast and walk to school.  She has also been preparing most of our meals and keeping up with our groceries and laundry.  Not to mention the family-elf style projects she has independently undertaken, such as putting all of my too-small clothes in storage so that I have room in my drawers for my steroid clothes.  Thank you so much, Mom!!!  I appreciate you!!  Would that I live long enough to return the services someday (although hopefully it's NOT because you have cancer)!! 

Now for some SCIENCE!  I asked Dr. Rad Onc about the pretty blue light that I see during radiation.  He said that I am seeing Cerenkov radiation!  It is light being generated by the secondary electrons produced by the radiation as they pass through the vitreous fluid of the eye at a speed greater than speed of light through the fluid.  Fancy, speedy electrons!!  Ooo I just love electrons.  This website has a nice picture of the exact color that I see, plus an explanation of why it is blue.  It doesn't just happen inside the heads of people undergoing radiation therapy; nuclear reactors that use water also give off a blue glow.  SCIENCE!!! 

Monday, November 19, 2018

It's begun!!

Oh man, where did we leave off?  Seems like so much has happened since my previous post!

So...I started whole-brain radiation today.  Yes indeed, already.  Getting Lloyd under control without further ado!!  Dr. Radiation Oncologist's office called me yesterday, on a Sunday, at 11:00 am, to tell me that they had completed the radiation plan and were ready to set up an appointment for treatment on Monday, what time would work for me?  After sputtering for awhile, I agreed to take the 11:30 appointment.  It was a somewhat jarring phone call!  Certainly not something I expected after finishing my brunch of egg and mushroom scramble.

The radiation treatment is interesting, albeit a little bit freaky.  Here's how it works:  I lay on the platform, they put the mask over my face/head and have me scoot around a millimeter at a time until I get positioned just right.  Then they move the platform until I'm lined up with some red and green lasers to get the coordinates just right for the treatment, then they take a scan (I think it's a brief CT scan of my head) and tell me that everything has lined up perfectly, and I make a joke about how if I could move the tumor I would have done so a long time ago so of course it's lined up perfectly.  Then they re-position my platform for the radiation.  My hippocampus-sparing radiation plan includes 9 fields of about 30 seconds each, so the whole thing takes about 20 minutes (after factoring in the time for the re-positioning of the table and equipment between fields).  The freaky parts:  1) some of the fields caused me to smell an ozone smell, and 2) some of the fields caused me to see bright, flashing blue light with my eyes closed.  If I opened my eyes, I couldn't see the blue light anymore. Super weird!  My own personal irradiated brain disco party.  Question for B, my bonus mom:  Can you explain the blue light thing?

Delightful part of radiation treatment:  I was treated by one of the dear nurses who took care of me back in the day of my twice-daily chest wall radiation, and she remembered me.  She gave me her arm when she called me from the waiting room, and ceremoniously walked me back to the treatment room.  Also, I had forgotten to take off my glasses, so she removed them from my face, and I apologized that she had to touch the dirty things.  I hadn't properly washed them since Puerto Rico, and the saltwater splatters made them look rather gross, I'm sure.  After treatment, before she handed my glasses back to me, she cleaned them with a proper lens-cleaner towelette.  Then she again gave me her elbow to walk back to the waiting room.  This is above and beyond!  And I'd like to emphasize the power of touch--after a big hug from the spouse, followed by taking the nurse's arm to walk back to the treatment room, I certainly walked a little bit taller and felt a little bit more confident about what I was about to endure.

After radiation treatment I went up to get my blood drawn and have an appointment with Dr. Oncologist.  She presented me with all sorts of great results:  my bloodwork was perfect, my bone scan was all clear, and my PET scan was all clear!  Huzzah huzzah!  No cancer in my body below my brain.  Huzzah!  SO, we are on the correct course of action to control my single pesky tumor (whole-brain radiation) and we'll discuss other Lloyd-control measures after the whole-brain radiation is complete, which will be in 2 weeks--I have treatment every day for 10 business days.  1 day down, 9 to go!

How do I feel now?  Mostly fine.  I have a headache, and I'm tired, but the magnitude of these things is not that much different from yesterday, for example.  My cheeks are kinda hot so I wonder if a fever is coming but I don't feel feverish, and my eyes are very heavy, but let's acknowledge that this was an EPIC day where I had to be all three of my selves (mom-scientist-patient) for at least a few hours each, so it's hard to blame any of these symptoms exclusively on whole-brain radiation.  And yes the part where I was a patient was stressful and hard and seemed to last forever!

My simultaneous tiredness + the need to update my loved ones (you) inspired a new thing, which is blogging from bed.  Thanks to the family elves I now have extra pillows on my bed for proper propping, so I thought I'd give it a shot.  I will definitely not make a habit of this!  I think it would be better and more comfortable and more efficient to simply own the fact that I need to blog/type and then sit in a proper chair with a proper table or lapboard.  This blogging-in-bed thing confuses the two tasks of writing and resting.  And the slow, slipping slouch is a real problem!  I don't know how the laptop-in-bed people do it! 

Time to be done with the blogging and phase-switch into sleeping.  Goodnight!  Be well!  Oh, and it looks like technology is working so I'll leave you with a Puerto Rico picture.  Sigh.  Those were the days!  ;)

The Allens on Condado Beach in San Juan, Puerto Rico, Nov. 2018.

Wednesday, November 14, 2018

My hair is on the frontlines again

I have previously written about how my hair is the first part of me to know that I have cancer.  Well, sounds like I'll be losing my hair again this time, and it sounds like it might come back or it might not.  Previously irradiated parts of my body have not regrown hair (my armpit was collateral damage in chest-wall radiation--it's half hairless, which is not a bad thing lol), so this might be interesting, but certainly something I can work with.

So, whole brain radiation.  It'll be once per day for 2 weeks, and it could start as soon as Monday but we don't know for sure yet.  Depends on how long it takes the dosimetrist and physicist and radiation oncologist to make the plan, and they'll take their time in order to come up with a plan that is the most protective of the precious parts of my brain that are most in danger by this procedure, namely the hippocampus.  Plus, next week contains a holiday, so there's something tidy about starting the following week.  I'm not in any rush.

The reason for whole-brain radiation and not stereotactic radiosurgery (SRS) again is that SRS is a whopping dose of radiation, and the risk of causing terrible brain damage (high risk of necrosis and stroke) in the brain adjacent to Lloyd is very high if we were to try SRS again.  We know this from patients who have gone before me; thank you brave patients.  Whole-brain radiation is a lower dose of radiation over a much greater area and will hopefully kill off Lloyd's growth for awhile.  Probably not forever, guys.  That's the part of today's consultation that surprised me.  I guess I had been naively thinking that the SRS treatment could and would kill Lloyd forever, and then again that whole-brain treatment could and would kill Lloyd anew, again forever.  I mean, I have no expectation that I'll live forever, but I was clinging to the hope that Lloyd could be controlled and then I'd just be waiting for the next cancer, like I'd been living between the breast cancers.  I suppose in a way that's what this last year has been.  But no, the chance of Lloyd being killed for good by whole-brain radiation is only like 15-30% (the range is because I don't remember what the doc said, and I didn't write it down, but it was something like this.  Less than 40%).  The success rate of SRS was supposed to be 95%, which should have been phenomenal odds...but here I am, with an undead brain tumor that'll kill me in the next 6 months if left untreated, but will still probably kill me in the somewhat near future even if we treat it now in this way.  Ugh.  Time to put that information out of mind!  I've never been a fan of survival statistics, and need to remind myself that I've already done a great job of surviving.

I already told you about the hair loss, but what are the more serious risks of whole-brain radiation?  Well, there is a 40% chance of permanent short term memory loss.  Dr. Radiation Oncologist said that it's not like alzheimers, but it is a nuisance, and it takes awhile for patients to learn to live with it.  Everyone devises their own tricks.  He said that navigation can also become an issue.  He assured me that I'll still be able to work, and that I'll still be able to learn and process things, I just might need to employ some new tricks to get items into longer-term memory storage.  I might need to rely heavily on lists and note taking, for example.  Heck, I already do that.  But in all seriousness, this is when things started to sound a little bit scary to me!  So, thanks in advance for your patience and assistance if this happens to me!!!  Also, thank goodness for smartphones.  It seems that that could make short-term memory loss more bearable, as a helpful tool to make all sorts of lists all the time.  Also, Alexa:  "Hey Alexa, in 20 seconds remind me that the reason I went to the kitchen was to make some tea."  Ha!  Funny not funny.

Bright point #1:  there's a drug that I can take, memantine, which is an alzheimers drug that has been shown to decrease the chance of short-term memory loss in patients like me.  So we're gonna try to get our hands on that little gem.

Bright point #2:  I don't have to increase my steroid dose!  We're going to try to maintain the dose I'm on during the whole-brain radiation and see how I do.  Huzzah!!  I was fully expecting to have to step back up to 12 mgs, if not more (they started me at 24 mgs in January!!).  I'm currently at 2 mgs at breakfast and 1.5 mgs at dinner.  Go me!!!

Bright point #3:  I have to have a new mask made for my whole-brain treatment, and it won't be as tight as the previous mask.  ALSO, it'll prevent me from needing face tattoos (for lining up the treatment the same every time--have have three tiny tattoos from the chest wall radiation, and it's nice that won't need head or face tattoos).  Huzzah!  Mask making will happen tomorrow.

Bright point #4:  The infusions mentioned in my previous post are still on the table, but they won't start until after the radiation treatments.  And I won't know more about that until Monday's appointment.  Huzzah!

Bright point #5:  After my bone scan today, I took the elevator up to the external relations department to learn about how to make a donation to my medical center, as the Allen family pledged to do as a result of the Carnation Nation Appreciation party.  I found out that it's super easy, that we can direct the money to a fund that is designed for patients who need monetary assistance to manage their care (such as gas money, etc.), and that I can give our donation in honor of members of my "care team".  So we can donate in honor of Dr. Oncologist, Dr. Radiation Oncologist, and the nursing teams and support staff, etc., and the Foundation will host a scheduled surprise ceremony for them that my family and I will be invited to attend.  I was very excited by the fact that the donation can be in honor of the people who have kept me alive this long!  This seems like a terrific way to honor them!!  Thank YOU, Carnation Nation, for making this honor possible!   

Bright point #6:  We were in Puerto Rico last weekend!  And it was the BEST!!!  I'll have to post photos some other time because the blog doesn't seem to be accessing my Google albums right now--technology fail.

Bright point #7:  I'm not sure if these folks or their efforts want to be called out on the blog, but you GUYS.  While we were in Puerto Rico, some Family Elves broke into my house, cleaned it, painted two rooms that Ian and I were just barely starting the plan for painting, rearranged the necessary furniture, and did some light redecorating (i.e., new bedspread to match the paint job).  The rooms were the master bedroom and my 9-year-old's (E's) bedroom.  Our flight got home late Monday night, and we walked into BLISS.  It was like an episode of something from HGTV!  The elves even had placed fresh flowers on the dining room table, and breakfast foods in the fridge (we had depleted the groceries before our trip).  AND mulched the leaves in the yard.  AND washed and folded the laundry.  I'm sure I'm forgetting something, but it was seriously unbelievable, especially now considering the somewhat stressful week we're being thrown into.  It was hard to get E to settle down and go to bed, she was soooo excited about her new digs!  THANK YOU, family elves!  You sure do make living with a brain tumor possible, and you make life WORTH LIVING.  I am the luckiest girl!!! 

Bright point #7:  I've found some terrific inspiration from my old self today.  Like here.  I'm grateful to myself for maintaining this blog for so long!  Huzzah!

I found this quotation elsewhere on my blog, when I was looking for something else (I've forgotten what I was looking for, and treatment hasn't even started yet, lol).  Seems like a good day to play it again:

"Why couldn't they just stop complaining so much, just let go and see how good they actually had it?  Everyone seemed to be waiting for something to happen that would allow them to move forward, waiting for some shadowy future moment to begin their lives in earnest." --Lucy Grealy, Autobiography of a Face

I need to make sure I'm not waiting to feel better, or for Lloyd to be good and dead, because perhaps those things won't happen.  I don't think I'm waiting, but this is a good reminder on a day that I have allowed to be a crummy day.  :)   

Monday, November 5, 2018

Short update

We won't have a firm plan for 2 weeks, which is when I see Dr. Oncologist again.  Before then, I will have a PET scan and a bone scan to determine if there is cancer lurking elsewhere in my body.  I don't think there is, and of course I hope that there isn't, but if there IS the good thing about that would be that she could biopsy it and see what its receptors are.  Because we are treating Lloyd in the absence of knowing for sure what its receptors are.  Our assumption is that Lloyd is Her2+ like my breast cancer was, but Lloyd could be something different, or at the very least is quite possibly something different now after being irradiated.  

I will also see Dr. Radiation Oncologist in the next two weeks, and he is one of my favorite Drs. for answering all of my questions.  Although I don't even know what my questions are yet.  What a whirlwind!  

Dr. Oncologist today was terrific, and she has at least 4 possible treatment plans.  She said that she's pretty certain that whole-brain radiation will be a part of my treatment plan to kill Lloyd's slowly growing undead appendage.  She also has some infusion drugs to offer me, including Avastin and irinotecan.  Or possibly some other drug (sounded like "zolata", but google is coming up empty with that) + neratinib, the last of which I'm already taking.  And she had two other combos of these drugs that she mentioned, but she is going to do some more research before making a decision.  ALSO, presuming that Lloyd is still Her2+, she thinks that the neratinib isn't working, so she's not too keen to continue it.  

Now I'm going to leave all of this uncertainty here in the Midwest for a few days and go wiggle my toes in some warm sand.  

Sunday, November 4, 2018


I've been debating about whether or not I should write today, or wait until tomorrow to write, but I don't think that I'll have time to write tomorrow so I've decided to unload on the blog today, even though I might have more updates tomorrow.  On Thursday I had an MRI scan of my brain, and the pictures showed that 1) I have no new tumors, huzzah, 2) the swelling is unchanged from my last scan two months ago, bummer but I could have told you that because I'm not feeling any better so this was validating, and 3) Lloyd has a pesky little region that is a little bit bigger than the previous scan.  The change is so small that Dr. SRS Expert even said it could be due to different planes being captured by the imaging.  BUT apparently it looks like that pesky little region has a blood supply, too.  Grrr...  When I met with Dr. SRS Expert on Thursday after the scan, the radiologists hadn't yet read the MRI, so we didn't have the blood flow (perfusion) result yet.  Dr. SRS Expert therefore spoke to us in terms of options rather than plans, and included options in case it was determined that the reason for the increased Lloyd size was necrosis.  He called me on Friday to give me the blood flow result, and when I said, so this is a bummer, right?  (SRS-treated brain tumor with a region that is not dead and indeed is growing (albeit slowly) seems like a bummer to me.)  He said it doesn't change anything we talked about on Thursday, and for example he's not going to rush me into any treatments next week or anything.  Then he said that he'd call Dr. Oncologist, who I see on Monday.  Options discussed on Thursday include whole-brain radiation (it is noteworthy that he cringed when mentioning that option...I think we must have all wanted the increase in Lloyd size to be declared necrosis-related), and perhaps Dr. Oncologist will have other medicinal options (i.e., chemotherapies).  Or I could go back and talk to Dr. Brain Surgeon.  Needless to say, I do not yet have a plan, just a partially undead Lloyd in my swollen brain. 

I asked about the drug Avastin, which was mentioned last time as a treatment option.  Apparently that is only an option if necrosis is suspected and would do nothing to treat tumor growth. 

I've had an excellent family weekend, lots of playing with the dog, knitting, and hanging out with my kids and spouse.  We did a family room re-arranging project together, which was of course a lot of work but REALLY great to work together.  The spouse and kids did all of the furniture moving; I sat in a folding chair, cleaned stuff, and managed the playlist.  ;)  ALSO, BIG FUN NEWS, we are going to Puerto Rico at the end of this week.  I've never been to the Caribbean, and after I ruined our Minnesota lake vacation in July, I thought that we needed a do-over.  The kids have a 4-day weekend due to parent-teacher conferences that sneaks up on me every year in November, resulting in lots of swear words because I am typically forced into lame childcare options due to poor planning.  So, this year, I booked this trip for the conference weekend, and wow is the timing ever terrific in light of last week's MRI.  I just want to sit on a beach, maybe take some time to be mad and sad and throw some sand at a sea turtle or something, and then find my way back to a grateful, fearless, blissful state of mind.  So much to be grateful for.  I'm not afraid of an undead Lloyd.  

I haven't blogged in awhile, so what else is going on?  How am I doing?  Well, about the same, which is why I haven't blogged.  Haven't had anything to say that wouldn't sound like a broken record.  The good news is that I have been very successful with decreasing my steroid dose--I've gotten alllll the way down to 2 mgs in the morning and 2 mgs in the evening.  Would LOVE to get off the roids, but Dr. SRS Expert says that it's the only thing keeping the swelling under control, and he'd rather not have to re-start me at a high dose (like we did in August) and work our way down again.  So, my goal is to get down to 1 mg in the morning and 1 mg in the evening over the next month or two.  That sounds easy compared to what I've already achieved.  

Oh, and I want to share a lovely thing with you.  At a recent yoga class, I learned a mindfulness meditation that I have been saying to myself, to my family, and to you.  

May I be happy.
May I be healthy.
May I be mindful.
May I be content.
May I live with ease.

May you be happy.
May you be healthy.
May you be mindful.
May you be content.
May you live with ease.