Pretty awesome!!

Who has a blog?  Me?  I have a blog?  Huh.  But there's all of these other ways I like to spend my time, too.  Well, that doesn't mean that you no longer have a blog, hbomb!!

I apologize for the delay, Carnation Nation!  Suffice it to say that I am rocking it in all sorts of dimensions.

And I do have several (small) recovery updates for you.

First, the never-ending drama with the steroids.  I have stepped down to a mere 1 milligram (mg) of dexamethasone per day.  I am very proud of this, and I am very physically comfortable at this dose.  I tried 0.5 mgs per day for a week, and felt moderately awful.  Headaches and nausea, which could mean either brain swelling OR discomfort due to underperforming adrenal glands.  I don't know how I'm to tell the difference!  So I bounced my dose back up to 1 mg.  Talked to Dr. Oncologist about this, and she said it's still too high of a dose for my adrenal glands to start making my own steroids, so I do need to come down/off eventually.  But I have an MRI next week (Friday the 12th)!  So she agreed that I could hold at this dose until after the MRI.  Huzzah for comfort and ease in the meantime!

Second, I have been soooo fortunate to be one of (what seems to be relatively few) chronically ill patients that had never had a problem with her health insurance.  Well, my health insurance, which has been awesome for a decade and has not denied a thing that I've needed to survive, denied my oral chemotherapy for 2019.  Turns out that this type of thing happens so frequently to so many patients that my cancer center employs a person who's entire job it is to find a way to get the needed care (this person even crafted the refutation and submitted it to my insurance company on my behalf.  Insurance denied it a second time.  SO this dedicated person contacted the drug company directly and somehow they agreed to give me the drug for free for a year.  My chemo shipment arrived at my house the day after I ran out of the pills from my previously insurance-approved prescription.  High drama! 

More drama:  The literature that came with the chemo shipment from the drug company was slightly different from the literature I had received from the previous pharmacy.  SO, I read it.  And in my reading of this new literature I discovered something:  my chemo, Nerlynx, interacts with another drug that I have been taking allllll year, Zantac.  (I've been taking the Zantac to prevent ulcers that would be caused by the steroid.  You might be asking, but Heather, why did no one mention the interaction between Zantac and Nerlynx previously?  Well, according to this literature, Nerlynx interacts with too many drugs for them to list them all on the paper.  They just happened to choose Zantac as one of the top 6 to highlight, so I got lucky in my reading.  But yea, it definitely seems as though my original Nerlynx pharmacist should have caught this months ago).  GUYS, I think that this is why I have not had the terrible diarrhea that is supposed to be caused by the Nerlynx (thanks, Zantac!).  My guts are not in fact a medical marvel.  So, this new-to-me literature said that if you must take Zantac, take it 10 hours before Nerlynx or 2 hours after Nerlynx or both.  Following these instructions does in fact allow my body to produce the famous watery side-effect of Nerlynx.  But it's not daily or constant, so perhaps my guts are indeed special.  I do think it's better (less watery diarrhea) if I eat oatmeal for breakfast (I know who's not surprised by this result--Dr. JT, PhD).  But this is just a guess right now, not rigorously tested.  But you'd be hard pressed to get me to eat anything other than oatmeal for breakfast now that I've got this notion in my head, so this hypothesis may never get tested.

I've been working!  Not quite full time hours, but I'm creeping closer and closer.  Still get quite fatigued and need lots of sleep at night, but it's getting better!  And everyone needs good sleep at night.  Occassional naps are not denied. 

Other news:  my hair has started to grow back in places.  I still have baldish-spots.  I say ish because there are light (not gray, I don't think!) thin hairs in the bald spots that never fell out, and I think that those hairs are growing.  But my dark brown hairs are the ones that did the falling out, and those are growing back in some places better than others.  It looks sort of ridiculous right now, but I'm not terribly concerned.  I greatly enjoy rubbing my head, and not having to do my hair in the morning (not that I ever did anything in particular with it).  As promised by Dr. Radiation Oncologist, I do have a reverse mohawk.  The biggest baldish spot is a short stripe down the middle of my head.   

More drama:  We took a road trip to Santa Fe for spring break in March, to visit my mom.  It was such a fantastic trip!  But it started out with lots of weather drama that caused some spontaneous re-routing.  I had deep gratitude for my reliable vehicle and my fully charged smartphone on this trip!

Here's the weather drama that tried to thwart our trip:

The eye of that storm is pretty much where we were trying to get to:  Colorado Springs, for a reservation at the kid hotel paradise at the Great Wolf Lodge.  BUT...

Seriously.  I-80 out of Nebraska was closed, I-70 out of Kansas was closed, and all of the highways leading into Colorado springs were closed.

screenshot of Nebraska 511 that evening.  Poor Nebraskans!  And parts of Nebraska and Iowa are still under water from the flooding that this storm caused.  

So, we managed to cancel our Great Wolf Lodge reservation (shoutout to the amazing customer service at Expedia!!  You wouldn't think so, but it's true!), spent an unplanned night in Lincoln, NE, and an unplanned night in Burlington, CO, then proceeded to vacation in southern Colorado (because by then the snow had almost completely melted).  Drama!

Our first vacation item of business was the Royal Gorge.

The family on the complimentary gondola ride across the gorge, approximately 955 feet above the Arkansas River.  Well, included in the somewhat steep cost of admission, so it's not truly complimentary, but you know.

Looking down into the gorge from the gondola.

Ian and Azalea zip lining across the gorge (they're not over the gorge yet in this photo)!  Poor Eleanor wanted to do it, but you have to weigh 100 pounds and be ten years old.  She's not quite either of those things.  

Chill out

In the days that followed my MRI, I had appointments with my local oncologists as well.

Dr. Oncologist has been oddly cryptic lately.  At this most recent appointment we talked about diet again, and she made sure I was still eating legumes (beans, lentils, etc.).  I said oh yes, I most certainly am, because they are relatively high in protein and have so many good things in them!  But she didn't make clear why this was important to her, so I'll have to ask next time.  When I told her about my struggles to get off the steroids, she asked me what I was afraid of...?  I told her--nothing!  I have no new tumors, my old tumor is dead, I don't have any fears right now, honestly.  I'm not afraid of getting off the steroids; in fact I yearn to be off of them!  I'm carrying around so much extra weight it's like being pregnant again.  It's exhausting!  But I can feel brain-swelling pressure on my inner ear even right now, guys, and this is after a good night's rest and an "anti-inflammatory" and protein-rich smoothie for breakfast, so I don't think that today is a day to cut my dose at all (I'm at 3.5 mg in morning, 3.5 mg in evening, so I HAVE made a tiny bit of progress.  I was at 4 and 4 when I had all of these Dr. appointments.  Oh!  And I requested smaller-dose steroid pills, so I'm no longer turning my 4 mg pills into dust.  I have 4 mg, 2 mg, and 1 mg pills, plus a pill cutter.  Fun times.).  OH!  And she reminded me to not be too stingy on the sugar reduction, because the brain runs on sugar.  I assured her that I was still eating fruits, and sweetening my smoothies and salads with dates, as well as not being into total deprivation.  I've just cut the crap!  And once you cut the crap for a few days, it's easier to say no.  I'd say the hardest thing to cut that I didn't even know was so sugary was my favorite yogurt.  Oooo I loved the Brown Cow cream on top yogurt!  I've completely switched to FAGE Greek yogurt, because it's 24 g protein per serving, and it was a challenge but now I actually like it.  With dates and things, of course, but I'm getting there.  ;)  The other thing that my colleague and boss, Dr. Immunologist, reminded me about is my little blood-brain barrier crossing chemo drug, Nerlynx/neratinib, that is fighting cancer cells in my brain and body every day.  How is that impacting the brain swelling?  I asked Dr. O about this, and of course her response is that there is simply no data.  We have no idea if or how the Nerlynx has an impact on the current brain swelling situation.  Yet another variable that I can't control. 

Next, I had the best conversation with Dr. Radiation Oncologist.  I asked him what he thought of the MRI result?  And he said that he had only got the written report; the fancy hospital down the road isn't connected to the same handy image network as pretty much everyone else.  So I showed him the picture I snapped, which I forgot to show you in my last post.  Here it is:

On the left is a frame of my brain from Sep. 2018, with the swelling being shown as the white cloud on the left upper part of the brain.  On the right is approximately the same frame of my brain from July 2018, with the swelling in the same location as the pic on the left.  See, even with August's worth of steroids, the swelling was not impressively reduced!  You can't see Lloyd/Pearl because the tumor is in a different frame.  I didn't take a picture of that because it's unchanged. 

He did not have any new interpretations to add, so I asked him my basic questions about how long can this continue?  What else can I be doing to help myself?  etc.  His responses matched everyone elses (the swelling could continue for years, steroids are the right thing to do but yes we also need to try to get off of them, listen to my body and step down the dose when I can but I'm right in that keeping the swelling down is top priority), which is extremely reassuring, but he added some catchy tidbits that I've latched onto.  One thing he said that I love is that, "Simple is not the same as easy."  It is theoretically simple to step down my steroid dose, for example, but it's not at all an easy thing to do.  I liked this phrase because on paper, this whole healing-from-SRS-treatment looked like it was going to be ridiculously simple, and although that might BE true, it's been far from easy.  What I'm doing is not easy, despite the fact that it seems so simple to me, and this simple-is-not-the-same-as-easy framework has further helped me to embrace rather than fight my bodily struggles in the past week (which, as we know, I've been struggling to embrace for months! I'm still not there yet, lol.).

I also followed up with him about Dr. O's weirdness about steroids and fear.  I asked him, what on earth SHOULD I be afraid of about coming off the steroids?  He told me some of the side-effects of long term steroid use (diabetes and a bunch of other things), and I said, but all of that is the lesser of two evils compared to the potential side effects of brain swelling, right?  And he said, right!  So, in hindsight, I think that Dr. O was making a query into my mental health more than making a commentary on the steroids.  That's fine, just confusing for me, lol.

Then we lightly discussed the things I've been discussing with all of the Drs. on my team at these appointments:  do they have tips or tricks for me to figure out how to best balance diet, exercise, rest, and life whilst reducing the brain swelling?  (I want so badly to help myself!  I'm a do-er, and being a do-er has led to my success in pretty much every other life experience I've ever had!)  He has no answers either, but he administered the following advice, "in the words of my daughter, chill out."  So I've been trying to do that!  I've been trying to turn off the analytical mind when it comes to my recovery and just let my body be.  I've received this advice before ("less striving, more floating") and I think it's just really hard for me to execute this.  So...I'll keep working on it, without TRYING to work on it, lol.  My preliminary solutions to get me into this "chill out" or "floating" recovery space are to do more knitting, and more cuddling the girls (for some reason, they've been requesting cuddles lately outside of bedtime hours, so it's perfect).  These are two easy and delightful things to ante-up in my daily life, perceived task list be darned.

New layout for my healing palace

Hello friends!  Sorry it's been awhile; for awhile I felt like I didn't have any updates, but now enough time has passed that it's time for an update regardless.  I feel like I'm in a healing holding pattern, but many things are indeed getting better.  First of all, 4 mgs of dexamethasone (2 mgs in the morning, 2 mgs in the evening) is my JAM right now.  This dose is low enough that I am able to rebuild my physical strength (I'm walking the kids to school every day [1.4 miles], doing a 2 mile aerobic workout almost every day in my living room, plus random bonus dog walks with friends, plus 20-30 minutes of living room yoga every day, plus I've resumed attending my Monday evening yoga class. Huzzah!) while feeling fairly comfortable in the head most days.  I definitely notice the battle between strengthening my quadraceps muscles and the steroid deteriorating them, but it's better than it was.  I can climb stairs much more easily; exiting a low car remains my most difficult feat.  I have no plans to step down this steroid dose until AFTER my next brain MRI (May 29), because I'd rather not have it show another increase in tumor size.  Dr. Oncologist is okay with this. 

My primary healing goal needs to be turning Lloyd into Pearl, and keeping the brain swelling down in the process.  It's not really clear what I can do to achieve this goal besides steroids, rest, hydration, and nutrition.  In fact, with the improvement in my physical strength has come an inattention to my brain.  Sometimes I do too much (I suppose), and then my head starts to hurt and I need to close my eyes.  I sometimes forget that my body has a pretty major project going on in my head.  Actually, if I'm honest, I haven't at all figured out what leads to the days when my head feels good versus the days when my head feels bad.  My hypothesis is that it's related to sleep and hydration, so I'm trying to resume being intentional about drinking water and resting, like I used to be when I was in the thick of my healing palace (January and February).  I'm still working half days (mornings), then coming home for lunch and a nap/"eyes closed" time (turning off all sources of mental stimulation help my head to feel better). 

I've resumed my normal diet!  Broccoli and beans and whole grains, huzzah!  My guts seem to be fully recovered from the ileus trauma, and fully adapted to the neratinib.  I am currently suffering from no digestive issues at all.  This is wonderful because cooking is easier, and because I've gained a bunch of weight (15 lbs!  thanks, steroids and white bread) and need to get rid of it ASAP.  The increase in physical activity and resumption of my normal diet containing insoluble fibers will hopefully lead to relatively speedy loss of the extra weight, but I am nearly 40 and I understand that weight loss can be harder to achieve as you age.  Hopefully I'm still a spry 30-something when it comes to weight loss.  We shall see. 

I've been doing fun things!  My mom, H, was here for a brief visit, and I accompanied my daughters on a Girl Scout campout, and I had an evening out with friends.  Oh my and with the wonderful springtime weather we've had great family time outside that includes playing badminton almost nightly and teaching my youngest how to ride a bike.

Training on a grassy hill at a neighborhood park

And pedaling, all by herself, on the same hill!  She got it!  Huzzah!!

Tonight my yoga instructor was asking me about my recovery, and she was curious as to whether the inverted poses such as downward dog make my head pressure worse.  I told her that in fact the opposite is true!  Forward fold is currently one of my favorite poses, and my head often feels a bit better after spending a short time in forward fold.  She said that she's not surprised because it is a pose of surrendering, and so being in forward fold allows me to physically and psychologically surrender to whatever processes my body needs to be doing right now.  Cool.

The last thing to report is that I have a PET scan on Friday.  Results the same day.  No worries, no problem.  Love and hugs! 

A higher-functioning recovery point and Seattle

Oh my, it's been awhile!  So much to catch up on, but in summary I'm doing quite well.  I finally reached the higher-functioning recovery point that I was longing for.  About two weeks ago I started truly feeling on the good side of crummy instead of shades of less crummy.  I assure you that there's a difference.  "Shades of less crummy" is  perhaps, maybe, hopefully feeling a bit less crummy than yesterday, at least for the purposes of telling your mom that yep you're feeling better, but overall you're truly still feeling quite crummy. This was me for pretty much two months.  Then in early March, approximately coincident with decreasing my steroid dose down to 2 mgs per day (half a pill), I started to feel on the good side of crummy, with extended moments of feeling good between the crumminess.  And that goodness continues!  And the crumminess--well, it doesn't need to be discussed further, as we all know what it entails by this point.  But it's LESS. 

On Saturday I stepped down to 1 mg dexamethasone, so now I'm cutting my half-pills in half.  It's quite ridiculous, and the dose I'm getting is very imprecise because I lose a fair bit of the tiny little pill to dust when I try to cut it into quarters.  (The pill is smaller than a shelled sunflower seed before I attempt to cut it!)  As usual I had slightly worse head pain in the first few days immediately following the step-down, but now I'm fairly comfortable for most of the day.  I continue to have increased nausea as my steroid dose goes down, but I can eat through it.  It's just a nuisance.  I wonder if the nausea is just because of the steroid step-down, or does the neratinib make me nauseous and the steroid has just been masking it for me?  Who knows.  Also, my face is still puffy as can be.  I wonder how long it will take for that to go away? 

I have been working half days this week!  Huzzah!  This was my idea, because it doesn't feel right to feel moderately good and not devote some of that energy to my job, which is paying me.  Also, it would be brutal to have to work an 8 hour day straight out of the gate when I run out of time off, so I thought that starting off with half days would be nice.  Last night at dinner I told the family that I planned to actually GO to work today (yesterday I just worked on my laptop from home), and they all cheered for me!  E fist pumped the air.  It was precious.  Some treasured colleagues gave me rides to and from work, and I had a great morning with my co-workers; it was SO good to see and hug everyone.  Oh my, and I had 2000 unread emails when I started yesterday!  Goodness!  I got through 500 in 4 hours yesterday, so hopefully I can knock them out pretty readily in the next week or two.  Most of them are junk and don't need a response.  It's pretty boring to click through three months of emails, so fortunately I have some other more interesting tasks to do (at least two manuscripts to review for postdocs in the group, among other things). 

Last week my little family went to Seattle for spring break!  We had booked the trip in the fall, before the diagnosis, so I worked it out with my job to still go on the trip without abusing my medical leave.  We had a direct flight from Omaha to Seattle, so traveling wasn't too taxing for me, and we were hosted most of the time by my brother and his wife.  It was GLORIOUS.  We toured a chocolate factory, had the best weather of the year, spent three nights on the beach, went to the zoo in Ballard, visited the Ballard locks, and grilled out.  For my part, I did all of these things, but I also got lots of sleep in cosy beds, and only had one day on which I felt too crummy to participate in stuff (I mysteriously puked up my breakfast, thus freeing up the neratinib to cause diarrhea [bananas and yogurt seem to work for me to prevent this major side effect], and I was then a digestive mess for 24 hrs!).  That was one of our beach days, so the family just enjoyed the ocean without me, no big deal.  But it did mean that I didn't get to take them on a hike in the Olympic National Forest as planned, which greatly disappoints me.  We'll just have to go back!!   

Me on the beach at Moclips, Washington, with the wind conveniently causing my hair to hide my steroid moon face.

Us flying a kite on the beach at low tide.   

My heart in the Pacific.

My sis A gets the photo credit for this one.  The spouse and E jumping for joy at sunset.

We found DOZENS of sand dollars!  

My family, my bro, and his wife after we filled up on chocolate samples at Theo chocolate factory, the first organic and fair trade chocolate maker in the U.S. (as we learned on the tour).  The chocolate was DELICIOUS, and the samples generous.  

For some reason Google is failing to access photos from the latter days of our trip, so I can't post them right now, but I don't think I took very many anyway.  The ocean got most of my camera's attention.  

Oh, the final photo I have to share is of my brother's wedding blanket.  I finished it in time to deliver it in person!  Here it is folded up, but hopefully you can see the pattern in the stitches.  It turned out pretty cool, if I do say so myself.  Huzzah for no loss of small motor skills so that I could get this finished during my recovery.   Me and wedding blankets.  

R and A's wedding blanket.  Pattern and yarn from Knitpicks. I used the color Platinum.

     

Today the tapestries are woven with golden threads

Auntie A:  Thank you so much for the care package!  It is greatly appreciated!  The girls and I are enjoying the goodies.   

I returned home on Saturday afternoon to a healthy family and a disinfected house.  Everyone has stayed healthy since, including me.  Go team and huzzah! 

Since then I have been doing some major healing in my tapestry-filled healing palace.  My guts are moving with gusto.  After a weekend of bizarre gut twitching and moderate gut movement that did start to provide some physical relief, I think today I finally birthed the food baby that my ileal-cecal valve has been previously reluctant to let go.  I think that this improved my workout, because for the first time since this whole business of Lloyd-killing and recovery started, I felt STRONGER today.  Just a tad, guys, just a tad, but it's an inspired and beautiful direction.  Now I'm wiped out, lol, but also excited because I know that tomorrow I'll feel another inspired bump forward, and then the next tomorrow, too, and it'll hopefully keep going steadily forward until I'm back to hbomb status.  Huzzah!!!!!  I could kiss the oncological nutritionist right now--so very very helpful!  I wish it had been the protocol to meet with her it order to get discharged following the ileus diagnosis.  In hindsight, it seems ridiculous to have sent me home with so little dietary guidance.  But oh well.  I'm on the right track now. 

While I work so, so hard on my healing, I think that my spoon is filled with oil.  I'm not doing too many tasks, because although it's hard to admit my brain really doesn't like to do tasks or to visit or to listen or to think about anything really, but I do find small ways to keep the oil in my spoon.  I don't let people wait on me, and I've found some new recipes for my current diet and cooked them for the family.  Today I found a recipe for a risotto made hearty with ground cashews.  I went ahead and used butter and milk (I'm to eat soy products sparingly because soy is an estrogen analog, and goodness knows I don't need to be selecting for estrogen-related cancers in my body), I skipped the wine for the kids (not worried about the alcohol, they just don't like the taste when we cook with wine), and I put the herbs in the rice instead of the topping.  The risotto was very tasty, and even the kids liked it!  For the mushroom topping, I added chopped fresh spinach to the mushroom and sundried tomato mixture, and served it with a splash of lemon juice.  The kids didn't eat the mushroom mixture, which I had predicted, so I sauteed them some green beans.  The meat eaters had sliced-up brats, because why not.  Chicken probably would have gone better with the risotto, but oh well.  ;) 

I still spend my afternoons resting/napping (the dinner preparation happens while I make my lunch--today it was gingered carrots and a peach cup and a grilled PBJ [with 2 Tbsp of peanut butter! counting protein is hard work and terribly filling!! and with homemade jam that I made with my friend K on a lovely evening in August, eating pizza and drinking wine, and our kids playing together.  Let's do that again!!] )  I still spend my evenings with the family and participating in dinner clean-up, etc.  Then I do my digesting, then yoga and leg lifts, then a bit of wakeful resting (crocheting or something), then bed.  It is a rigorous healing schedule.  I am very, very busy in my tapestry-filled healing palace. 

Did I tell you that I'm down to three steroids each day?  The pressure in my brain is holding steady, so I'm going to stick with the three 'roids for now.  As soon as I have a day or two with less brain pressure, I'll cut my lunch steroid.  That'll be a great day!  Getting off the steroids will help with my digestion, and relieve my stiff, puffy joints, and all sorts of other side effects. 

Today's bonus is that it was a beautiful, albeit dangerous, snowy day.  Thor and I enjoyed watching the snowfall from the safety of the living room.  Yesterday the spouse and kids bought him a smelly new treat--a goat horn--so he chewed his stinky goat horn during the snowfall as I rubbed his belly.  I hope you all stayed safe out there!

The report from my beautiful muster point

"Muster point" is what they call the location at work to which you "muster" when you evacuate for a fire or tornado.  I thought it sounded funny to acknowledge my evacuation status to my MIL's home as a muster point.  ;)

I'm getting there, guys, I'm getting there.  For the past two days I've determined that my brain pressure was a little bit less, so I stepped down my steroid dose to 3 pills per day instead of 4 pills per day.  Yesterday was my first day of 3 pills, and brain pressure IS up today from yesterday, but it's been worse previously so I think I'm on the right track.  I'm sticking with 3 pills for the time being, and my face does feel better about it (I'm sooooo puffy and uncomfy from the 'roids.  SO puffy.)  Huzzah for incrementally decreasing brain pressure, and huzzah for steroid reduction!

I saw Dr. Oncologist today and she doesn't need to see me again for two whole weeks, huzzah huzzah!  Longer leash!  My primary jobs are to pay attention to the brain pressure, step down the steroids as able, and keep doing my super healing program.  Oh, and I need to add leg lift exercises to my daily routine to build my quads back up (yep, she noticed the atrophy.  Soooo much atrophy.  She's SO thorough, and SO good.)  She's pleased that I'm doing a daily 1 mile workout that includes leg lifts and kicks (guys, it's the hardest part of my day; seriously sooooo hard for me to do this little workout right now!) and I told her that I aspire to do more but I'm just so weak and tired, and she was super supportive.  She said to just keep up what I'm doing, then in a little while maybe add another half-mile later in the day, etc.  I was grateful for those words of support from her.  I think I'll add the quad lifts to my evening yoga, so that they are separate from my morning workout.  Sooooo hard.  

The most interesting part of my day was meeting with the oncological nutritionist!  Wow did I learn a lot.  I have been eating the exact right foods to cause bloat, which is to say that I've been eating a whole lot of the wrong foods for my messed-up guts.  I've been eating a lot of insoluble fiber (legumes, broccoli, onions, fruits and veggies with peels, whole wheat), and I need to switch the balance to eat more SOLUBLE fiber.  She suggested LESS whole grains and fewer legumes right now; she even gave me permission to eat white bread!  Gasp!  This is pretty much the opposite of my normal legume and vegetable diet, but that's okay.  I'll try it, and I'll enjoy it, and it's just temporary.  

Also, the nutritionist is a big fan of the smoothie routine because she likes that all of the food is pulverized, making it easy to absorb.  Here's a hit list of some good foods for me right now to get my small intestine more comfortable and hopefully peristalsing like a normal human:  pumpkin, sweet potato (no peel), carrots, nuts, yogurt, cooked fruits with no peels (applesauce, peaches, pears, etc.), avocado, eggs, peanut butter, prunes, cottage cheese, oatmeal, ripe bananas (not green), mushrooms, watermelon, whey protein powder.  I think I can blend up some tasty smoothies with some items on that list!  And some foods are a bit confusing, like spinach.  I told her I was putting fresh spinach in my smoothies, and she waffled on it a bit (mmm...waffles).  She suggested that it'd be okay as long as I avoid too many stems.  Maybe if I use frozen spinach, since it's partially cooked?  It seems that being cooked is a good thing for my guts, but it also sounds SUPER disgusting to put cooked spinach in a smoothie.  We'll see!

She also provided a terrific resource to look up all of the the nutrient content of your foods.  Follow the link, or just google USDA Nutrition Database.  On that page you can type in any food you're interested in and find out the nutrition facts on it, how much an appropriate serving size is, or in my case, how much fiber it contains.  It's pretty fun!  Good job, USDA!   

Oh, and she also said that drinking warm things helps with digestion, so I'm gonna add a cup of hot tea, hot water, or hot ginger water to my after-meal digestion program.  Not to be rude, but I feel like I should put a little PSA here before all of you kind and thoughtful people send me a bunch of tea (this is a real hazard of the blog! It truly is!): please note that I do not drink green or herbal tea on account of my history of lung cancer (the scientific details of why are explained in the post via the link).  I only drink black, decafffeinated tea (I do not need caffeine in my veins), and it can have spices (ginger, cinnamon, etc.) but NO herbs, mint, hibiscus, chamomile, etc.  (L, colleague, thank you for the tea you already sent!  I'm greatly enjoying the decaf rooibos!!)    

My MIL just made me a hot, fresh mushroom quiche for lunch. OMG was it good.  Thank you SO much, MIL!!  I love you!  I had ONE serving, some applesauce, and some prunes, and a 'roid. 

The other news to report is that my youngest is feeling better (fever free!) and went to school today, bless her little heart.  The rest of the family seems to be fine.  I'll return home tomorrow after the decon is complete (beloved helpers are conducting a lysol or chlorox treatment of all surfaces and handles in the house, and a hot-water wash of pillowcases and bedding.  That should do it, I think.  THANK YOU for all of your hard work to keep me healthy, family and helpers!!!  I love you all SO deeply!!

Oh, and a curiosity:  yoga pants have ceased to be comfortable, which kinda cracks me up.  I suppose that when one reaches this epic level of lounging, one notices that thorough waistbands and snug spandex actually scratch and burn on dry winter skin (I'm moisturizing, but still).  Conveniently, a women's travel group to which I belong on Facebook (thanks for the hook-up, JJ!!) had a thread yesterday about everyone's favorite comfy travel pants, so you KNOW that I took to some armchair shopping and ordered me some cosy pants based on these gal's recommendations.  I started with a pair of Uniqlo joggers, so we'll see how I like them, and I in turn will let you know how they work out, in case you too are on the market for some cosy pants.  Other suggestions from included Vera Wang or Lularoe Leggings, but I'm generally not a fan of leggings--too snug, too short, and the waistband is usually insecure.  Plus I want to get away from the clinging.  I didn't manage to find a pair of Uniqlos with my 36" inseam, but I ordered men's instead of women's so they'll be good enough, and it's cosy pants for recovery so length isn't terribly important as long as they are sufficiently loose and warm.  The other top suggestions on the thread were Elephant Pants, but their longest inseam is only 30" so that's out for me.  I emailed their customer support just in case they take special orders, and although they don't take special orders she did say that she'd suggest longer inseams to their product development team, lol.          

Truth

This time, I'm going to get the complaining out of the way and end with the positive stuff, to try and lift my own spirits.

I am miserable.  My guts are not functioning properly.  Dr. Oncologist is baffled by my complete lack of diarrhea.  I am having the opposite problem:  my small intestine is failing to send food down into my colon.  She thinks that it is because of the steroids.  I think its just everything--drugs, radiation, less exercise than usual, recovering from ileus.  Suffice it to say that regardless of the reason, I have had scant scat in my colon alllllll week.  Allllll weeeeeeeekkkkkk.  My belly is bloated and distended, but I've had x-rays both Friday and today, neither of which showed signs of an ileus blockage again (thank goodness!) so I'm just at home, full of bloat and food in my small intestine with apparently nothing to worry about.  Just an incredibly full belly and an empty colon, NBD.  Sigh.   

Over the weekend Dr. Oncologist prescribed a partial colonoscopy prep to get things moving (entire bottle of miralax and two other pills), and that helped a little bit.  I did not give birth to a big satisfying food baby (this is in contrast to last weekend, in the hospital, when I resolved the ileus with an enormous food baby--forgot to mention that at the time), but this weekend's treatment did get things moving for me, and I am grateful for the small relief from that.  Further relief is continuous, to be sure.  I have to keep being patient.      

So, what am I doing to help myself???  I need to increase my small intestinal peristalsis.  The doctors and nurses have given no advice on what to eat or do to achieve this (I'm setting up an appointment with a dietician for Friday).  A few days ago I switched to a mostly liquid diet to see if that would help.  I've had fruit and vegetable smoothies, broth, soup, and lots of gatorade and juice and water water water.  Then, after breakfast, I lay on the floor, on my back, in shavasana pose and practice pranayama breathing.  Shavasana is great for stimulating the parasympathetic nervous system  , as is humming during pranayama breathing, so this is my way of trying to let my body figure shit out on its own, literally.  

I also spend a lot of time with a heating pack on my tummy, to keep things relaxed in there.  

After I digest breakfast for an hour or so, I exercise.  On Saturday the family went on a beautiful 1-mile walk at a nearby walking path.  The sun was out, it was unseasonably warm, the brother and his wife were here, my youngest raced her new auntie continuously, "first one across the crack wins!", my oldest used her roller blades that she got for xmas, and Thor sniffed everything.  It was wonderful!

After exercise I force down a bit of lunch so that I can take my steroids.  I had a small set-back with the steroid step-down--if I take fewer than 16 mgs per day, I feel like my head is going to explode.  So, I was at 24 mgs per day at my peak 'roid dosage, they stepped me down to 8 mgs per day in the hospital (WOA!  way to fast of a step down!!!), and now I'm holding at 16.  I have quite a bit of brain pressure even at 16 mgs per day so I'm not yet ready for the next step down.  My brain is SO full.  I'm sure that my poor gut functions are not helping me to heal my brain, but I'm trying not to worry about it.  I'm trying to have peace and let my body do what it needs to do. 

I take my after-lunch shavasana and pranayama in bed.  I sleep for about 3 hours.  This is very nice and restorative. 

This brings us to family time!  The girls play games with me or we just hang out, and I eat dinner with the family and we do normal things.  Tonight was laundry-sorting night.  The girls threw their clean clothes around the living room into the appropriate baskets.  A good time was had by all. 

After dinner I lay on the floor of the living room, in shavasana, and once I feel sufficiently digested this turns into my daily yoga practice.  This is the best I feel all day long.  I hug each knee in separately, I let each knee fall to the side separately, and I do thread the needle pose with each leg.  I do bridge pose as many times as I can (usually three times, holding for one breath each time).  Then I do supported twist pose FOREVER.  Then I do cat/cow a couple of times.  The hardest thing is down dog, but I get up into it every day.  I try to hold for a minute, but I don't time it.  Then I do forward fold for a long time and slowly roll up into mountain pose.  That's about all I can handle, I'm so dang weak and tired, guys.  So weak and tired!!!!

My brother likes to remind me that this isn't chemo.  He's right, this isn't chemo.  It's its own thing.  I don't know what it is, but I don't like it, and quite frankly I'm a little sick of it.  BUT...I have peace.  I am peace.  I have strength, I am strength.  I have hope, I am hope.  And I have the ability to rest.  And a new line for the time being:  I have the ability to pass food through my guts!!!!

A part of me can't help but acknowledge that there's a little bit of karma going on here.  In my professional life I study swine gut bacterial communities, and occasionally to address our biological questions we dissect pigs and takes samples from their intestines.  I have personally sampled hundreds of piggie intestines, lovingly scraping gut microbes off of the mucosal lining.  One of the locations I've sampled the most is the ileal-cecal junction, which is a place in the gut that separates the small intestine from the large intestine and I feel is functioning terribly poorly in my body right now.  Alllll of those cute little piggies are laughing at me.  All of them. 

I have some items to continue with the Bliss List!

6.  This song right now.  Oh my goodness.  It's much more convenient for you to hear the song via a YouTube link, but I also recommend that NPR has a tiny desk concert of this song that is absolutely fabulous.

7.  My boss, C.

Last week she came to my house for lunch, and put my mind at ease about so many things that were bothering me.  She is full of kindness, and compassion, and practicality, and helpfulness.  She reassured me that my only job right now is to heal, and that the work will be there for me when I'm ready for it.  I know this, but I can't tell you how invaluable it is to hear it reiterated by ones own boss, especially since my healing is taking waaaaaaaayyyyyy longer than I anticipated.  Thank you for everything you're doing for me, C.  I love you so, so much, both as a friend and as a boss.   

8. My brother and his wife, A.

They flew out from Seattle for the weekend and treated my family to so much bliss!  They rented a hotel room and took the kids swimming, they played games, they grew crystals from a crystal-growing kit (and it's WORKING!  Best crystal-growing experiment ever conducted in this house), they got groceries, they bought me a Ninja blender to help with my new dietary issues, they took the old blender away, they cleaned my kitchen soooo well, they brought me to the doctor today, they took me on walks.  It was so, so wonderful to have you here.  I love you both so much.  More than I was able to convey today.  I can't wait to feel better and spend a different kind of quality time with you in the near future.  

9. My high school biology teacher, SS.  

I have treasured both the hat and the note.  I reread your letter nearly daily, dear.  Thank you so, so much for the words.  And the hat is darling!  I especially love the perfect button.  You have excellent hat-making skills. 

10.  My brother's new mother, L.

The painting has brought me so much peace!  It's beautiful, and I am in awe of your talents.  The girls love the paints so so much.  Thank you so much for your thoughtfulness. And it was such a beautiful parcel to open.  

        

Home sweet home

Dr. Oncologist checked on me first thing this morning.  She was pleased with my progress and sent me home straightaway, woo hoo!  I'll see her again on Friday.  Dr. Surgeon checked on me too, and he said I had lots of gut sounds.  It feels good to be told you have gut sounds after you've been told you don't. On Saturday Dr. Oncologist on-call had told me my guts weren't making any sounds. He listened everywhere, and they were silent.  Now I have burbly gurgly guts, and I'm currently feel every inch of them.  Ugh. 

After all of that excitement to eat, when it came down to it I was actually rather nervous to eat!  Despite my perceived hunger, my guts are a touch queasy.  Dr. O reminded me to start slow, with the BRAT (banana, rice, applesauce, toast) diet, so that's essentially what I did for breakfast.  Before I went home I had a nice bowl of oatmeal, a slice of toast, a banana, and some yogurt.  I seemed to tolerate it just fine, but I did feel pretty bloated afterwards.  Then I really wanted broth for lunch, so I made myself some french onion soup and that really hit the spot but of course didn't do much to fill me up.  I ate a lot of crackers, and another banana.  Then I laid on the couch all afternoon in the dark (it was a pretty dreary day), listening to a kickass playlist on Spotify (Your Favorite Coffeeshop--check it out, yo), alternating hugging my knees in and stretching my legs out and thinking of about a billion blog posts to write.  Hugging the knees while laying on your back helps to aid digestion (thanks, yoga). 

Suddenly, I felt better.  GUYS, while Ian and the girls were at Taekwando practice, and I should have been waiting patiently to have a nice family dinner with them, I got up and turned into a BEAR!  I turned on the oven to warm up dinner, which included a loaf of French bread.  While it was warming I discovered that Calvin the Cure's Grandma D had brought us a pan of scotcharoos.  OMG.  Instantly I clawed out a square and gobbled it down.  I clawed out a second square, not even pausing to lick my fingers.  (I know, SUGAR, but when Dr. O sees my bloodwork she's always impressed by my blood glucose so I figure I've got room to cheat--I'm not going diabetic. And I gotta EAT!)  By then I decided that the bread was sufficiently warmed for me.  I took it out of the oven, hacked off a chunk, and dipped it in butter--no knife, I just peeled back the wrapper on some room temperature butter and carved the warm bread right through it like it was sweet corn. Oh. My. God. Warm. Buttered. Bread. I must have eaten a third of the loaf, just standing their carving some butter.  Then I regained my self-control and decided to use my energy on visiting the shower fairy to scrub the hospital off of me.  The dog had enjoyed the hospital smells and was rolling on me all afternoon, trying to absorb them, but I was rather sick of it myself.  By the time I finished my shower the family was halfway done with dinner (they weren't rude; I insisted that they start without me so that I didn't have to rush), so I joined them and resumed my Bear-hood.  Broccoli quiche ended up hitting the spot big time, and the family ate almost the entire pie. (Thank you, Grandma D! and the meat-eaters enjoyed their casserole, too!)  And hopefully the eggs and cheese will fill me up a bit better than the other foods I'd been putzing around with.  Word on the street is that I've got some of my Uncle's famous lentil soup arriving tomorrow, so progress will continue! 

I'm to restart taking the neratinib tomorrow morning, so wish me luck with that.  It'll be fine.  Remember that it wasn't the neratinib that was the problem, it was the FEAR of the neratinib, manifested as immodium, that was the problem.  I am not afraid of the neratinib.  My guts will be fine.  Most importantly, future Lloyds will be prevented! 

A comment on the dog, because he deserves an introduction.  We adopted Thor almost two years ago, and he is 2.5 years old.  He is some sort of wire-haired dachshund mutt, and I tell him that he's so ugly he's cute (his head is too big for his body.  I'm too lazy to find a photo now I'll try to post one eventually).  I didn't want a dog, because I needed another chore like I needed a tumor in my brain, but it's pretty great having a dog when you're a mom with cancer.  He helps everyone to feel better!  He's not a very good lap dog, but he is very fun to play with, and playing is healthy for everyone.  The kids play with him both to play with him and to entertain me, "Mom, mom, look at Thor!  Awww, look at Thor!!"  When I'm well he gets a walk every morning, because I walk the kids to school and he joins us, so he's missing me a lot I think.  When I got home today Thor didn't even jump on me, he just collapsed into my legs, seeming to surrender in gratitude that I finally came home to him.  When I did my yoga tonight, he brought me a toy and tried to bury it under my neck, then laid on my arm while I stretched.  Bless his little heart.  Even the spouse has commented on how nice it is to have a dog to help us feel better while I'm sick.  Thanks, Thor.       

I'm interested only in the present

T, friend:  Thank you for the walks this week.  They mean so much to me, and I hope that we can do some more in the coming weeks.  It is such a treat for me to get out during the day, in the sunshine, and move my body in the fresh air.  I appreciate you taking the time to help me recover!!

I continue to be humbled by and grateful for my family, who has rallied around me this weekend as they always do.  I have always adored you, and I hope that I show you that enough when I'm well because I know I don't when I'm unwell.  Thank you for the errands, and the childrearing, and the company.  And this time especially to my daddy, because he schlepped me to my appointment on Friday and rubbed my back in the waiting room while I suffered a fair bit, and I'm certain suffered a fair bit himself when his oldest daughter was told she's being instantly admitted because her guts could blow.  Being a dad is hard!!  PLUS, he was so focused on carrying my coat and crud that he forgot his own coat in the Oncology coat closet, which of course was loooong closed by the time he departed the hospital.  Our hero walked home without a coat; thankfully his car keys were not in the coat.  

Tonight's blog title is brought to you by a quotation from The Alchemist, by Paulo Coelho.

Because I don't live in either my past or my future.  I'm interested only in the present.  If you can concentrate always on the present, you'll be a happy man.  You'll see that there is life in the desert, that there are stars in the heavens, and that tribesmen fight because they are part of the human race.  Life will be a party for you, a grand festival, because life is the moment we're living right now. 

Presently, I am in the hospital, being a superhealer, loving you all in my heart, which is full of happiness and gratitude for you.  I've been here since my check-up on Friday afternoon--I did not pass go, I did not collect $200!  My oncologist saw my puffy belly (SO puffy, guys, like a damn down comforter under my skin), ordered an x-ray, and admitted me for the duration.  Diagnosis:  distended ileus!!  Caused by the opposite of diarrhea:  immodium!!!  Frustrating to be sure, and important information for any future neratinib-takers out there, but I assure you that I was and am grateful for the hospital stay.  A distended ileus is super dangerous and I'd rather be receiving fluids and dealing with it professionally than weathering things at home. 

The main reason for the hospitalization was the fear of rupture.  Things were so blocked and swollen in there that I was at a risk for rupturing (I promised the surgeon I wouldn't, and I did not, thankfully) so I was under the watch of the on-call surgeon all weekend.  He's ordered x-rays and checked on my belly every day, and it is improving every day. 

I was not allowed to eat or drink anything until Saturday, at which point my x-ray was slightly improved so I was allowed to drink clear liquids (juice, broth).  Prior to that I did not mind not eating.  Eating had been such a chore all week, but I had had to eat my three meals so that I could take my steroids, so I had been a dutiful little eater, even trying to eat lots of calories as Dr. Oncologist ordered (my weight was dropping just a bit, prob just muscle mass loss.  I'll get it back in no time).  So had a blessed break from eating for 24 hours, but by the time I was allowed to drink the fluids I was ready.  The broth hit the spot!  I sucked it down like it was Thanksgiving dinner.  I even had it for breakfast, which was weird but better than nothing.       

Then TODAY Dr. Surgeon said that my guts are looking good I don't need anymore x-rays, and that I could eat a FULL liquid diet!  Oh man I was soooo hungry and ready for that.  I thought a full liquid diet would just be jello and pudding, but oh no, there are OPTIONS.  I've had cream of wheat, cream of mushroom soup, pudding, custard, peaches, yogurt, and applesauce.  A semisolid feast in my opinion!  At dinner Dr. Surgeon said I could even have a BITE of toast.  He made me promise not to eat the whole thing, but he said I could have a bite (I had three bites, don't tell on me).  And if all of this food stays down (it has, it is; he's worried I'll get nauseous and reverse the progress) I can have WHATEVER I WANT FOR BREAKFAST!!!!  I'm gonna be up at 4 am ordering room service, ha.  No I won't go nuts.  I need to gently restart my colon!  I have oatmeal in mind, maybe a baked potato.  I gotta get some microbially-accessible carbohydrates to my colon!  The full liquid diet is feeding my small intestine, which is awesome to get things moving and wake up my guts, but to truly recover I've got to feed the bacteria in my colon.  As I recall the hospital food is sufficiently tasty, but it's very Midwestern.  I don't think they have lentils on the menu.  I'll explore tomorrow! 

J.T., PhD, what's your prescription to fix up my gut?  I can be your n=1 test subject: tell me what to eat to restart my colon without making my ileum want to puke!  (J.T., PhD received his PhD in my lab last summer and wrote a gorgeous thesis on beneficial gut bacteria of mammals.  He's a world expert in colonic bacteria, so hopefully he'll comment on what I should eat then you can all go out and eat the same thing and improve your gut a little bit.  Now that J.T., PhD is famous on the blog we actually do need "Ask J^)#$" t-shirts, ha!.)

Another recovery thing that is going on is that Dr. O is stepping down my steroid dose.  This is absolutely fabulous because the steroids are making me so puffy.  My face is swollen, my feet are swollen, my joints are swollen.  That said, my brain is also swollen, so it's a dance I'm supposed to be doing.  I'm supposed to pay attention to the pressure in my brain and not let it get worse.  If it worsens, the roids go back up just a tad.  If the brain pressure stays the same or continues to improve as the roids decrease, I can keep decreasing the roids.  I'm on a lot of roids, so the step-down doses are spread over several weeks.  I'll be glad to be off the roids, but the brain pressure is certainly real so I'm under no illusion that the roid step-down is going to be quick.  I'm grateful for the lack of seisures and would like for the no-seizure trend to continue!

One thing I adore about being in the hospital is that I get to walk a lot.  I just grab my IV pole and walk some hot laps up here on the 5th floor!  I don't need any help!  It's wonderful, and likely very good for my guts and my brain. 

I've also done yoga every day while here.  I can't do my lay around flopping on the floor yoga because--hospital floor, yuk.  But I have a few standing poses for which I don't fall over, and there's a few seated poses that work okay with the given furniture.  I stay close to my bed in case I tip.

One weird thing about staying in the hospital is always sleeping.  This time a new thing is that they'd like for me to do is strap these leg massagers on my legs when I'm laying down, to prevent blood clots.  Fine with me, I don't need a blood clot!  I'm an obedient patient.  But they massage alternately--left leg, right leg, left leg, etc.  This alternate rubbing gives my body the sensation of spinning when I close my eyes and start to fall asleep.  So the other night I started spinning and all of a sudden this enormous snow-white orchid bloom, the size of a dinner plate, spun into my head.  It had magenta coloring outlining the center of the bloom, and it was perfectly the size of my brain.  It lodged into my brain, completely covering my brain like a blanket.  It smelled nice and kinda helped with the spinning, so I let it rest there for awhile.  Then the mouth-like magenta center of the bloom opened its jaws and started munching on Lloyd!  I could hear it crunching!  It was so weird!!  I haven't decided how I feel about this vision yet, it was that powerful.  I don't usually have such strong visions; even my yellow paintbrushes were more abstract than this hungry orchid.  Hopefully I can have a more peaceful sleep tonight and welcome the hungry orchid more fully in the light of day. 

Ru g_____/

I'd almost forgotten how this all works; the outpouring of love and support began days ago, and I just now remembered my mechanism of delivering thanks! Here, in italics before my posts, I will write brief notes of thanks to people who have shared their generosity and time with my family.  I don't use first names, just the first letter of your name (or other anonymous identifiers like "dad") and maybe a little indication of how I know you if I'm concerned about ambiguity.  If you sent something and never see a thank you here, do reach out to me because it's possible that we missed it and I don't want to miss a thing!  I acknowledge that this is not as good of etiquette as an actual thank-you note, but this is what I can manage in my life right now, and it seemed to work before.  <3

Dad and B:  Thank you so much for the delicious pies and for the nice visit, pops (you may have beat me in cribbage this time, but next time you're going down!!).  I love you so, so much.  BTW, Dr. O asked about you, dad.  She said she's looking forward to seeing you SOON (surely she has an agenda; I don't know what it is, but she specifically asked for YOU).  I'll see her next Friday at 4:30; would love to have you along if you have time.  

M:  Thank you so much for the key lime pie!  It's the best I've ever had, even better than the drunken ones my friends and I would bake in college at 1 am (yes, we did that.  Love you, college friends!).

A:  Thank you so much for the coloring book and Legos and beverages.  You are so thoughtful to think of my daughters.  I treasure my time with them, and with you, and it was even better that you stopped by to share the joy with us.  

N from college:  Thank you so much for the YOU GOT THIS socks!  And the box they came in has family photos printed in it!  Did you know that?  Both the socks and the box are so unbelievably awesome.  I am saving the socks to wear to my SRS treatment on Monday, because I need to be reminded that I've got this.  Thank you, friend!

N from work:  Thank you so much for the banana bread!  It was gone within 24 hrs.  It has been most enjoyable to watch your cooking and baking skills grow, and I am now grateful to reap the benefits! 

C from my work, and some of my spouse's co-workers:  It was so very thoughtful of you to send flowers!  They are all so beautiful.  The girls each asked to take a bouquet upstairs to their bedrooms, so our whole house is fragrant and vibrant, which is just what we need right now.  Thank you for your generosity! 

MIL:  Thank you for taking care of my girls when the spouse and I go to appointments.  And for feeding them, and us, with your nourishing food.  I love you when I'm not dealing with this shit, but when I am dealing with this shit the love transcends to such a depth of gratitude that I can't hardly handle it.  You are invaluable to the peaceful survival of my family, and knowing that they will survive is an essential element of my hope and recovery!!!!  I hate bringing this turmoil upon them!!!

Alright, guys.  Shit got real yesterday.  I met with Dr. Oncologist, my primary oncologist who has been with me since my original inflammatory breast cancer (IBC) diagnosis over 7 years ago. This was my first time seeing her since I received the results of my brain MRI because she was out of the office that day.  She answered all of my questions and gave me some additional answers, one of which I'd prefer if I still didn't know.

I don't think I'll be able to write anything else unless I dispense with the bad news, because it's just knawing on me.  Please note that my choice to blog about it is for me, not for you; I'd prefer not to share this with you, but it's gotta come out.  I hate knowing my official prognosis, because it's never been good (IBC only has a 50% 5-year survival rate--I've BEAT THAT!!  Huzzah huzzah huzzah!!!  This is so important to remember and celebrate!!!), so if I avoid the hard data it's easier for me to live without watching my clock of time tick away.  I have no intention of changing that attitude, but to do so the following information needs to be deleted from my brain:  Dr. O said that usually patients in "this situation" live another "12-24 months".  She did not elaborate on what precisely is meant by "this situation" (that is, is it the size or location of my particular tumor, or just the tumor itself?  Not that it matters), but clearly what is meant by "this situation" is some form of metastatic breast cancer in the brain.  I voiced my confusion, because Dr. Radiation Oncologist had played up the optimism of the efficacy of SRS treatment (90-95% effective).  She said yes but there will likely be other tumors and eventually many patients decide that they are tired of the treatments and then choose palliative care.  Okay, I'm reaaaaaalllllly far from that, guys, so hopefully my outward health will help me to live somewhat normally for quite some time.  Long story short, though, is that this is the beginning of a tumor-in-the-brain journey.  Hopefully it's nice and long!!!!

My spouse asked a question about why we're in this situation?  Why was Lloyd not on the PET scans, etc.?  She brushed it away with a disappointing but psychologically helpful answer: "This had to happen".  Apparently this is just what happens with people like me who had metastatic HER2 positive cancer and have been on anti-HER2 treatment.  The anti-HER2 treatments (the Herceptin and Perjeta that I've been taking every 3 weeks for 4 years) don't cross the blood-brain barrier, so the brain is the only unprotected place in the body.  So, tumors in the brain are precisely what happens.  Am I glad I didn't know that before?  AbsoF&*^inglutely, because I would have been fearing it, and fear is the greatest enemy to life.  (I have several musings about fear, and these are some potentially good ones here and here and here.)  But, the scientist in me wishes I had been aware, because I would have been paying far more attention to my brain function and possibly could have called for a brain MRI months ago, before Lloyd got so big and painful!  [The ignorance is my own fault, but I don't like to too deeply research my condition because the stats are so depressing.  I rely on others [my siblings, anyone else] to do the research and decide what needs to be disclosed to me.]  Doesn't matter.  Point is, this is exactly where I'm expected to be, given my medical history.  All there is to do is deal with it, and that's where I excel!  Give me a hoop, and I will jump through it!!  I'm a finisher, so I'm gonna finish Lloyd on Monday, and then the next cancer task, and the next one, for as long as I can.

Now that I've brought you down, please allow me to try and lift you up again. My HER2 cancer expert at the prestigious University hospital down the road told me that the key to surviving this crap is to survive long enough until the next drug is available.  There's still no cure, but new treatments are quickly becoming available.  Good news:  CARNATION NATION, we DID JUST THAT!!!  We survived until the next treatment is available!!  The new drug is called neratinib and it just completed clinical trials.  It has only been available for about 6 months!  It is approved for extended adjuvant therapy (that's me--"extended adjuvant therapy" means "years of anti-HER2 [or other specific cancer] treatment"), it targets HER2, and it CROSSES THE BLOOD BRAIN BARRIER.  Also--it is ORAL!  So, not only do I get to be one of the first patients using a new drug specifically designed to fight HER2 cancers in the brain, I get to take it by pill form instead of my tri-weekly chemo infusions!  How amazing is that?!?!

That's right, I get to stop using the Herceptin and Perjeta.  They have done a fantastic job of controlling the metastatic cancer in my lungs (it's completely gone!), and I remain infinitely grateful to their existence, my access to them, and my insurance coverage.  The reason I can stop taking them is because the neratinib will do the job that they aren't doing; the neratinib will actually do the WHOLE body, including my brain that has been elusive to the Herceptin and Perjeta.  So, if like me you are nervous about stopping the Herceptin and Perjeta that have worked so well, we must remind ourselves that the game has changed and our new perspective is that yes they worked well for the previous problem, but they do not work at ALL for the current problem.  We must focus on the current problem, for obvious reasons.

The two most important dots to connect in this post are "12-24 months" and "neratinib".  The existence of neratinib, and my access to it, will hopefully revise the "12-24 months" prognosis in ways that cannot be predicted.  Please join me on my crusade to delete "12-24 months" from my mind and remind me of the hope afforded by neratinib.  In addition, I was previously diagnosed with those dreaded lung metastases, which many of us feared would have killed me long ago, but I started the then-new Perjeta and look where it got me.  Hope and faith, people.  Hope and faith. 

I think my last piece of news is that I'm now playing side-effect roulette again.  This won't be as bad as chemo, but might prove to be interesting.  I told Dr. O that I still have a headache even after being on the dexamethasone steroid for a week, and my high-res MRI showed that I still have brain swelling, so Dr. O is upping my dose of the 'roids.  Instead of 8 mgs per day, I'm now to take 24 mgs per day.  Whelp.  Sleeping was nice, lol.  The 'roids are important because the brain swelling needs to go DOWN.  Brain swelling puts me at risk for seizures, and she said I probably shouldn't be driving (but I've been driving for weeks!  doh).  Also, the SRS treatment will injure my brain and cause more swelling, so it's important to get it under control before the treatment on Monday.  Okay, so more 'roids, which has caused an influx of prescription medicine into my house to counter the side-effects of the 'roids.  High-level roids such as these often cause fungal infections in the mouth and vagina, so I have an anti-fungal mouthwash to do 4 times per day to prevent an itchy mouth infection, and a pill to pop should a yeast infection arise.  High-level 'roids also tear up your guts, so I'm on some stomach acid-controlling pill.  Finally, 'roids reduce your immune response, so I'm on an antiviral to prevent cold sores that tend to flare up when one's immune system goes down.   (No visitors who are or could be sick, please.)  The side effects of most of these new drugs say, "headache and dizziness".  My poor brain!  What a hot mess it's gonna start to be.   But it's important to remember that I remain grateful for these medical resources to keep my body in action while it is dealing with the important job of eliminating a brain tumor. 

I almost forgot the most important thing I learned yesterday:  the SRS treatment will take place at 4pm on Monday, huzzah!  Thank you in advance for your powerful anti-Lloyd and brain-safety vibes that you might send my way at that time!!  I'll probably work in the morning, not because I'll feel like it but because I should save my paid time off.  I would work from home, but the new leadership in my job has put a cap on the number of hours that employees can work from home.  What new inane inconveniences will they think up next? 

I've been letting the kids play video games while I blog, but I probably should switch into dinner-making mode.  As always, thank you for your support!