Wednesday, January 31, 2018

Healing with Intention is Working

I am delighted to report that my misery is much less than it was a few days ago, and it continues to decrease daily.  My guts CAN move food from start to finish, albeit SLOWLY, and I can be patient with the process.  Thank you so much for all of your positive energy.  I am drenching myself in your golden light from the universe, I assure you.  I am painting my guts up and down with yellow the yellow healing light, I am planting golden flowers with it at my ileal-cecal junction, and I am growing golden stars of healing light all around Lloyd's carcass. I spend most hours of most days doing this.  Thank you. 

I'm still eating pretty much only simple, liquidy foods until things stabilize (I have no timeline or expectation for that).  Lots of smoothies and onion soup (I love caramelized onions, so I just whip some up and add some vegetarian broth).  Today I cheated a bit because my friend S recently shared a recipe for Irish Brown Bread, which made me miss Ireland quite badly, so I made a loaf and slathered a piece in butter and ate it.  I made it with bran and oats instead of wheat, so hopefully my guts won't mind.  They haven't yet.  My brain and tummy were grateful--it was soooo tasty.  But other than that--mostly liquids for me!  You might be wondering where I'm getting my protein, or how I'm getting full?  Well, I've got some protein powder that I sometimes add to the smoothies, or I add cashews (the Ninja blender can handle cashews!  It's so cool!), or avocado, or peanut butter.  I haven't exactly figured it all out yet.  Right now my goals are to not to get bloated again and to not be hungry--so far, goals achieved!  I am meeting with an oncological nutritionist on Friday (I'm super excited!  I know her--she's married to a grad student in my bestie's lab!) to get her tips on increasing peristalsis, getting enough nutrition, and how I'll know when I can eat other foods without them getting stuck.  In other words, when can the hbomb have a burrito?  ;) 

And, further items for the Bliss List:

11.  My co-workers, near and far

My job is amazing for numerous reasons, many of which are the beautiful people I work with.  My work has a program that allows me (and other ill people who enroll) to continue to be paid even though I ran out of paid time off weeks ago, and this program is possible because other employees donate their hard-earned time off to me to use.  I enrolled in the program, and in ONE DAY my colleagues donated all of the paid time off that I've requested so far.  These are their hard-earned VACATION days, not their sick days.  Thanks to their generosity, I will continue to be paid while I calcify and minimize Lloyd, reduce my brain swelling, heal my guts, and regain my strength.  I am deeply moved by everyone's generosity, and my family is so, so grateful.  This is a significant potential source of stress for most families, and I can't emphasize enough how grateful we are to not have to worry about this working momma's paycheck.  Thank you so much, co-workers.  Thank you.  I love you all so much. 

12.  N, friend, postdoc, scientist, warrior, Crokinole champion, my beloved Canadian

Today N sent me the most wonderful message, and I want to share part of it with you because she's so totally right on, and henceforth I'm going to take the message to heart.  Here it is:

I feel like you started your treatment off on the wrong foot when the doctor indicated that you should expect a week of down time to recover.  Clearly that was never an accurate expectation, and so we need a do-over so that there won't be some small part of you that is clinging to that story. 
 I thought it might be helpful to literally visualize yourself talking to the doctor, before the radiation ever took place.  And picture the doctor saying: "So... the radiation?  That's the EASY part.  The hard part is convincing yourself to do only the bare essentials for the next several weeks so that your body can divert all of its blood supply and efforts to your brain. Destroying a tumor is a 4-week process where you will look like there is nothing going on, when in reality you are working so hard that you may only have enough energy left to hang out with your kids and do some light exercises to make yourself feel better." 
I see it as similar to the first trimester of pregnancy when nothing looks different but actually your body is doubling its blood supply and making you completely exhausted.  You are doing the work right now, and you are doing fantastic.
Isn't that wonderful?  She's so right!  THANK YOU for these words, darling.  I love you.

12.  MIL, today specifically

I'm an evacuee!  My youngest came home sick from school today with a mild fever.  I put a message in MyChart to let Dr. Oncologist know and to offer to get out of the house, and she said that yes I should get out of the house and not return until everyone is healthy and the house is "disinfected".  My amazing MIL, who lives just a few blocks away, picked me up before dinner and stole me away to her house.  I packed my Ninja and special foods, the laptop, my book, comfy clothes, and yoga mat.  I don't know how long my banishment will last, but I will be comfy here and grateful to avoid a respiratory infection!  Thank you so much, MIL! 

Monday, January 29, 2018


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.  

Thursday, January 25, 2018

Bliss in a list

1. Flatulence.  Finally flatulence.  I encourage you all today to fart with gratitude.  Do it for me. 

2. My heart.1

The happiest flower girls who ever existed, at my brother's wedding, Gig Harbor, Washington, September 22, 2017.  PURE BLISS.  
These girls are being so patient with their healing momma.  Last night I made dinner because I wanted to (drops of oil in my spoon; I started it and took lots of breaks.  The spouse gets the credit for wrapping it up and cleaning it up!  Menu:  pan-roasted broccoli, mashed potatoes, chickpeas in my favorite bulgogi sauce [1 can drained rinsed chickpeas, 1 tsp honey, 2.5 T soy sauce, 1 T sesame oil, 1 T lemon juice, 1 T orange juice (I used a small clementine), 1 tsp sugar, garlic (pwdr or fresh whatevs), cook it all down until liquid gone--you're welcome], hamloaf for the meat-eaters [my kids enjoy tofu and black beans for veggie protein but HATE chickpeas], apples, pears) and so I needed a good sit afterwards.  The girls bussed the table, loaded the dishwasher, then got out the chess board and played a rousing game of chess, just the two of them.  Then after they got their jammies on they both climbed into my lap for a huge snuggle, 140 pounds of pre-teen bliss. It was heaven.

My gratitude is two-fold:  first, for these helpful, happy, and independent children.  And secondly, to have survived this long to know these wonderful children!  When I was first diagnosed 7 years ago, these little peanuts were 15 months old and 3 years old and I was faced with the knowledge of a 50% 5-year chance of survival.  All that chemo, and stress, and TODDLERS?  How on earth did we DO that?!?!?  Because of all of your help, for sure, and of course one does what one has to do, but SERIOUSLY.   

3. My heart.2
My brother's perfect wedding. 
I intentionally keep the spouse off the blog for his own privacy.  But that handsome devil whom I married 17 years ago is KILLING it right now, and I can't not talk about it for just a moment.  He's taking such good care of me by being patient with my epic healing processes, and he's running out to get my prescriptions or crackers or whims after the girls are in bed, and he's turned himself into a Girl Scout Dad since it's cookie-selling season (of course it is, right; we'll have cookies starting Feb. 1) and I'm essentially out of commission for that, and he's turned himself into the morning parent (typically my job) complete with ponytails and figuring out divergent ways to school when one kid has Quiz Bowl and the other doesn't, and he's getting the girls to their evening activities, and he's feeding us healthy meals, and he's getting groceries, and he's reading books at bedtime, and he's folding laundry after bedtime, and he's walking the dog, and on light nights he's still taking care of himself by going to the gym, and he's doing it all with remarkable PATIENCE and GRACE and STRENGTH and he doesn't want help with meals.  Historically he doesn't like to read the blog, and that doesn't bother me at all (if it were him with cancer and a blog, I could see how that could be painful for me to read about what he's going through), but maybe I could have you send some of your brilliant positive energy his way for him to suck up from the universe in moments he's likely experiencing weariness.  And if you see him, please look at him in awe and somehow tell him how amazing he is.  I am in awe of him right now.  And full of pride for the beautiful human and daddy that he is.     

We celebrated our 17-year wedding anniversary on Dec. 22, 2017.  It was a chemo day, and the girls didn't have school so they were with me.  The spouse brought me flowers and lunch from my favorite Thai restaurant and we had a family anniversary celebration in chemo room 7.  We never did get a night out, though, because of Lloyd (chemo caused a fever and headache and led to Lloyd's discovery shortly after our anniversary).  The spouse has already made us reservations for a Valentine's date, which is not a holiday that we typically celebrate, but we figure I'll be monumentally better by then and we can have an anniversary mulligan.  I can't wait.  MIL, are you available for some childcare that evening?     

4.  Blood-brain barrier crossers.

In the white dish are the six little marvels of science that I take each day--neratinib.  They go down so easily!  And still the opposite of diarrhea for this all-star patient.  Also shown, for scale, in the orange lid are mini chocolate chips that I reward myself with for the steroids.  The steroid pills are awful to take because they start to dissolve on your tongue and burn on the way down.  
 5.  Neighbor M

I have a very special friend and neighbor, M.  When I'm well we walk our kids to school together, we book club together, and we too infrequently hang out for no reason together.  Since I have been out of commission she has gone above and beyond for my family.  Every morning my spouse can count on M to help get one or the other of the kids to school, depending on the morning activity that day (my big kid has had a lot of extra morning crud lately due to a pending chorus concert tonight), all with the convenience of a text message.  In addition, the clinically crazy foreign language program lady wouldn't stop harassing my phone this weekend, and M took care of turning the forms in for us!  Just last night, the spouse gave a big sigh and said something like, "Thank God for MH."  M:  all of the things are that you are doing for him, for us, in the mornings, and with foreign language, and everything else that I probably don't even know about, are more helpful than you realize, and my family is so, so grateful.  I love you.

I thought I had some more, but I'm really tired so that's all for now.  I won't hesitate to start a new bliss list if/when I think of the rest.   

Tuesday, January 23, 2018

Never forget the drops of oil on the spoon

One doesn't plan for these things, Carnation Nation, but I think that the Alchemist, by Paulo Coehlo, has a bit more for us today.  (I don't have this stuff memorized; I make highlights on my Kindle of lines that I like in books, so when I remember an inkling of a something I  want to draw from I just search my highlights from a particular book to find it.  Read good books, have good highlights!)
The wise man listened attentively to the boy's explanation of why he had come, but told him that he didn't have time just then to explain the secret of happiness.  He suggested that the boy look around the palace and return in two hours.  'Meanwhile, I want to ask you to do something,' said the wise man, handing the boy a teaspoon that held two drops of oil.  'As you wander around, carry this spoon with you without allowing the oil to spill.'  The boy began climbing and descending the many stairways of the palace, keeping his eyes fixed on the spoon.  After two hours, he returned to the room where the wise man was.  'Well,' asked the wise man, 'did you see the Persian tapestries that are hanging in my dining hall?  Did you see the garden that it took the master gardener ten years to create?  Did you notice the beautiful parchments in my library?' The boy was embarrassed, and confessed that he had observed nothing.  His only concern had been not to spill the oil that the wise man had entrusted to him.  'Then go back and observe the marvels of my world,' said the wise man.  'You cannot trust a man if you don't know his house.'  Relieved, the boy picked up the spoon and returned to his exploration of the palace, this time observing all of the works of art on the ceilings and the walls.  He saw the gardens, the mountains, all around him, the beauty of the flowers, and the taste with which everything had been selected.  Upon returning to the wise man, he related in detail everything he had seen.  'But where are the drops of oil I entrusted to you?' asked the wise man.  Looking down at the spoon he held, the boy saw that the oil was gone.  'Well, there is only one piece of advice I can give you,' said the wisest of wise men.  'The secret of happiness is to see all the marvels of the world, and never forget the drops of oil on the spoon.'
Today I think I attended to the drops of oil on the spoon while I wandered around my healing palace.

Gosh darn it takes a long time to heal your guts from ileus!  Queasiness was less today, but plagued me half the night.  If yesterday was get-food-in-there day, and then today was increase-food-diversity day, as suggested by J.T., PhD.  I had oatmeal, banana, scotcharoo, (lentil-carrot-onion-celery-garlic-curry over brown rice that I made for myself), crackers, juice, cottage cheese, Auntie's pea salad, crackers, Uncle's lentil soup, bread, yogurt, applesauce, scotcharoo, and water water water.  And the Dr-recommended probiotic I'm taking is Floragen.  All food is going down easier today than yesterday, so continued gratitude for improvements!  I'm not having much colonic fermentation going on yet, but hopefully that'll start up soon.  Dr. Surgeon did tell me on Sunday that my colon had really shrunk.  These things take time to restore.  I feel bloated, but apparently my guts are working so I just need to trust my body and exhibit continued patience.  I have yet to do my yoga today (that'll come after blogging), so there's still hope to feel a little better yet before bedtime.

The 'roid step-down seems to be going well.  My brain still feels swollen (pressure behind my eyes, on my inner ear, on my teeth and jaw), but it's not any worse, so I'm sticking with the doses as suggested and haven't upped them again. 

I've decided that my fatigue battle could be as much due to muscle atrophy as due to the fatigue associated with healing my brain.  This is a complicated assessment, to be sure, but I'm pretty sure I'm right.  My legs look like yours, Grandpa Birdlegs!  So today I found a 1-mile easy in-home walk by Leslie Sansone on YouTube, and I worked out!  Wow was it hard!  I could hardly lift my legs!  But I know it was the right choice--it helped to work a bit of the steroid stiffness out of my joints, and I didn't feel terrible afterwards.  I felt great, as a matter of fact!  It was my drops of oil on the spoon. 

Then I felt the need to get horizontal, so I rested deeply for a few hours in my cosy bed.  I very much enjoy my deep rests, even if I don't quite fall asleep.  I'm normally a side sleeper, but for resting I completely relax my whole body while on my back, with a couple of pillows because that's more comfy for my swollen head.  I sink into the bed and just let my brain BE.  I let go of holding on to anything at all, and my brain just does whatever it is that it needs to be doing.  Sometimes this deep relaxation makes the pressure increase, sometimes it makes things start to creak inside my head, sometimes it gives me a draining sensation against my ear.  I have no idea what any of it means or is, I just let it happen.  I imagine that it's my healing superpower right now.  My tapestry-filled palace of brain healing.   

Thank you to the mystery friend who left a beautiful white and magenta orchid on our porch for us!  It's lovely!  I've never owned an orchid but my MIL is an orchid whisperer, so I'm sure she can help me.   

RSBB:  Thank you for the books and treats for the girls!  Very thoughtful!

Thank you so much to Auntie J for taking a day off from your full-time job to clean our house today!  The guest room is ready for my brother and his wife, your nieces are thrilled to have clean sheets on their beds, everything is vacuumed, the kitchen and bathrooms are spotless.  We appreciate you so much!  And you must be exhausted, bless your heart!  Everyone needs an Aunt Jacque!        

Monday, January 22, 2018

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.       

Sunday, January 21, 2018

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. 

Thursday, January 18, 2018

Still more patience

A and M:  Thank you so much for the wonderful lasagna!  It was such a hit with the whole family, even the kids.  My parents were impressed that my kids liked spinach in the lasagna, so thanks for putting it in there so that I could impress my parents.  ;)

A (roomie):  Thank you so much for the sweet parcel!  The girls had so much fun with the activities.  A scratched off the rainbow activity and turned it into a thank you note for you, but I'm not sure that I'll ever get it in the mail, so please know that she wrote you a thank you.  :)

M:  Thank you so much for the delicious Mac and Cheese!  The spouse didn't even get any; the girls and I wolfed it down.  Also, thank you for running that errand for me.  It greatly put my mind at ease. I appreciate you!

MIL:  Thank you for the food rubs.  They are divine, and the healing powers are real.   

Guys, I was COMPLETELY misinformed by Dr. Radiation Oncologist about the recovery period.  Completely.  He said, a week of fatigue.  That has come and gone with very little improvement in my energy level.  That's fine, I can be patient, but I'm sorry to have had you all thinking that I'd be functioning by now (especially my co-workers who depend on me!).  I haven't even felt like blogging (obviously).  My days consist of staying awake long enough to stay hydrated (I imagine that hydration is super important for my brain right now), eat some food so that I can take my roids on schedule, go on a short walk, nap for a bit, drink and eat some more, do a few minutes of very gentle floppy yoga, then crawl back to bed.  With of course plenty of kid and dog snuggling sprinkled liberally throughout.

Last Friday I saw Dr. Oncologist (I'll be seeing her weekly for awhile now, I guess) and asked her to clarify what my recovery period should look like.  She said that I should take at least a month off of work until the symptoms of brain swelling are significantly reduced.  (I have a lot of pressure behind my eyes, and against my nose, my left ear, and upper jaws, no doubt from my body calcifying the dead Lloyd tissue and recovering my brain from the radiation treatment that went through it.)  Judging by how lousy I feel right now, I think a month off makes sense.  I need to give my brain plenty of rest to overcome this hardship in the best way that it can.  As only it can.  I need to breathe deeply and let my body heal itself without distraction.

Speaking of distractions, gut disturbances are a major distraction!  I started my new chemo pills last Friday (neratinib; crosses the blood-brain barrier to prevent further Her2+ breast cancer metastases in my brain; I will take this now instead of Herceptin and Perjeta infusions).  All of the literature says that neratinib causes horrible diarrhea (like, put-you-in-the-hospital diarrhea) so when you start taking it they have you also start immodium to prevent the diarrhea before it starts.  Welp.  Guess who has yet to have diarrhea and now hates immodium?  This girl.  My poor guts have been so backed up and confused.  I quit taking the immodium after 2 days and have been feeding my gut bacteria lots of microbially-accessible carbohydrates, and I'm happy to report that things are moving again.  And still no diarrhea, huzzah!  Now I have a cupboard full of immodium at hand for if and when it starts.  Until then, I'll stick with my yogurt and lentils, thank you very much, and see how that does for me.  But I tell you what, belly aches are a severe impediment to resting!  A very uncomfortable distraction from brain healing, to be sure.

Recovery factoid: I'm not to drive for 6 months.  That's not so bad, because I'm fortunate to live in an area of town where I mostly walk places anyway.  And I have plenty of treasured co-workers who will help me to and from work when I'm well enough to go in again.  I'm not worried about the driving.  But thanks in advance for giving me a ride in the future when I need one!  :)  The reason for no driving is because I'm a seizure risk as long as my brain is swollen, and my brain will be swollen for several months.  It'll take my body several months to reduce Lloyd down to his dead little calcified self, and my brain will be full of immune cells and swelling while that process is taking place.  I need to honor that process.  So...yea.  Longer recovery road than I thought!  Patience, patience, patience.     

Thursday, January 11, 2018


M & M:  Thank you so much for the treats from La Mie bakery!!  Oh my goodness they were divine!  You spoil us rotten!

So far, I think that yesterday was the worst of it.  The pressure in my head was greatest yesterday, and relief was hard to come by.  It's not the same as pain, it's just--pressure.  And it causes a touch of anxiety, because one knows that one is not supposed to feel great pressure inside one's head.  It's behind my eyes, on my left inner ear, and even in my jaw.  I did gentle yoga for nearly an hour (but not too many upside down poses, because I didn't want to increase the pressure in my head), and my mom rubbed my neck, and those two things gave a little relief.  We also tried an ice pack on my head for awhile, which was surprisingly nice.  

Besides the head pressure, the other big phenotype is exhaustion.  It's not quite the same as chemo fatigue, because with chemo fatigue I felt so incredibly terrible in dozens of other ways in addition to the fatigue, whereas this is pretty much just fatigue in my bones.  I can still move, I just don't want to.  If I move too much, I get a tiny bit nauseous, so I sit or lay back down.  Solution: sleep, and lots of it.  I'm sleeping through the steroids no problem, so that tells you how tired the SRS treatment has made me.  My cancer scan buddy, J, said that his doctor once told him that he could irradiate his foot and it would make his whole body tired for a week or more.  So, I guess that what I'm going through is normal!  

I had thought that I was going to get to binge-watch Netflix this week while I rested and recovered, but I'm not enjoying television very much.  So I mostly just crochet or read when I'm wakeful, then go back to sleep.  The kids have a snow day today, so I'm trying to get the kids to play the board game Ticket to Ride with me, but that hasn't worked so far.  :)

The last update is a little bit of a bummer:  I have to ask you for no more sweets at this time, please.  The steroids are making me temporarily diabetic, so I'm to cut back on the simple sugars and desserts.  This it easy for me with my usual diet, but less easy due to the steroids and the generous offerings of Carnation Nation.  Self control is not strong when you feel crummy and just want a piece of homemade pie!  :)  Thanks very much for helping me to cut back on the sweets.    

As always, I appreciate your support!  Hugs!    

Tuesday, January 9, 2018

Lloyd is dead!!!

A and C and family:  Thank you so much for the beautiful flowers and delicious cupcakes!  You are so thoughtful!  Daughter A was particularly touched that her friend's family sent us something, so that was extra special for us.

A, my new sis:  Thank you so much for the timely turtle bracelet!!  It's soooo adorable!  I'm not taking it off all week.  I love you!

Spouse, Dad, Mom, Mom, Sis, Sis, Unc (the waiting room crew):  Thank you so much for being there with me yesterday.  It truly is special to have a waiting room full of loved ones helping you wait for the procedure to start and ready to hug you when you come out from a procedure.  The doctors and nurses were impressed; I was impressed; and your love helps me to recover!!!

MIL:  Thank you so much for taking care of my daughters yesterday, including the extra mile you went to honor the tooth that fell out yesterday.  Thank you for filling my gaps and leaving none for them!!  Also, thank you for the marvelous healing footrub last night.  You have a gift, dear.  I deeply appreciate that you share it with me. 

We did it.  We blasted Lloyd.  I was so nervous that I forgot to take my phone with me to the procedure room, so I have no pictures despite my intention to take some.  Fortunately, there's not really much to see, and I couldn't have taken pictures during the thing anyway.  I have pictures of the room from my previous radiation treatment 7 years ago, if you're curious.

Here's how it all happened:  First, my sister gave me a picture of my brother and I on our hike from a few years ago, so I had my brother in my pocket the whole time, and a reminder of the fun things I do when I'm not fighting cancer.  Then, a nurse took me back to a big room that was mostly empty except for a long flat table and a big open tube.  The end of the table near the tube had those trusty blue brackets attached to the end, with the back of my mask in the bottom.  I didn't even have to change, I just laid down with my head in the brackets.  With scant time for a deep breath, they were applying the front of the mask and fixing my head into place, stiffly, uncomfortably.  It was happening too quickly and I was getting nervous, so I told them to keep talking to me to keep me abreast of what they were doing (because I couldn't see anymore with the mask on), but I told them that I was going to stop talking so that I could breathe and calm down.  After a pause, the nurse said, "so what do your kids like to do?"  Ha!  I mumbled through the mask, "taekwando. girl scouts. but I don't want to talk."  I felt super rude, but I had to take care of myself, man.  Talking was painful and not helping me to relax.  Plus, I needed to calm my nerves so that I could hold still.  I didn't want Lloyd to be in the wrong position!!

After my head was in the mask (cage is really a better word for it), they put a box over my mask and shot an x-ray to make sure that everything was in the right position.  The x-ray looked great apparently, so they removed the x-ray apparatus and prepared the first radiation apparatus.  The radiation beam is shot through a hole in a tube, and a metal cone is screwed onto the tube to focus the beam as needed for the radiation plan.  You'll be happy to know that there are lots of checks and balances to make sure the right cone is screwed on for the treatment plan.  After the nurse screwed on the cone, she scanned a barcode that made a happy little bleep bleep to confirm that yes, this is the cone for this treatment for this patient.  I liked the bleep bleeps.  Then they all left the room and the first anti-Lloyd blasts began!  And this is the weird part because from what I can tell the beam doesn't move very much, but the bed does.  I felt like I was cruising around a dance floor, jostling this way and that, which was actually pretty uncomfortable because my head was locked into place, so every tiny ridge in the floor tapped the bridge of my nose, my temples, my eyebrows.  I'd love to see how much the bed actually moved, because maybe it wasn't all that much, but I know I moved fully across the room at least once because the decorative pot lights along the walls were blazing through my closed eyelids at one point.  The center of the room was devoid of pot lights, and I had asked for lights out.  So I know I moved around a lot, and this humors me.  My anti-Lloyd waltz!

The anti-Lloyd blasts themselves:  I couldn't see them or feel them, but I could hear them.  Or maybe I could just hear the buzzing of the machine that produced them, I don't know.  But the blasts were accompanied by a light buzzing sound, not inside my head but captured by my ears.  I could hear each of the three blasts, and they seemed to move in an arc around my head, but that's only judging by sound so I have no idea if that actually happened.  Also, I'm pretty sure I was perfectly still during each blast; I think that the movement of the bed was to re-position me between blasts.  These three blasts took only 10 minutes total, then the team came back in and we repeated the cycle:  another x-ray to confirm position for the second blasts, then the second round of 3 blasts.  That was it!  The whole thing took about an hour.

Interestingly, I was REALLY uncomfortable throughout the procedure.  I mean, not like hard-chemo uncomfortable or surgery uncomfortable, so let's keep this in perspective, but it ended up being a lot harder than I thought it was going to be.  The mask actually hurt quite a lot (on the day that we made it, it was uncomfortable but not painful), and the pain was manifesting as pain in Lloyd itself.  It was so weird.  The mask pain was actually caused by pressure against the back of my head by my mask, which was was making my neck stiff on the left side, and this was causing a weird sensation inside my head.  When we weren't actively scanning or zapping or doing anything else that required me to be perfectly still, I took my deep yoga breaths to try and relax my neck, which helped my mental game over the pain but actually increased the physical pain in the back of my head (because I was essentially relaxing my body into a pillow that wasn't there).  It was quite the predicament!  But certainly a short predicament that had to be overcome, and I knew I was actually fine.  I just had to breathe through the discomfort for a few more minutes, then it would be over, and it was! 

It turns out that I think Lloyd got the best possible anti-Lloyd treatment.  First of all, at least twice during the procedure I was told that my pictures were lining up perfectly.  Maybe they say that to everyone to give them piece of mind, but I doubt it.  Huzzah to me for being consistently still during my scans!  And huzzah to the mask for keeping my head perfectly in place!  And most importantly, huzzah to Dr. Phys for coming up with such a terrific anti-Lloyd SRS treatment!  He said that he spent over 12 hours coming up with the plan, tweaking it to make it better and better.  He said that originally it was going to be 1.5 hrs with 3 planes (maybe "planes" isn't the right word? I don't know the lingo, and he was telling me this right before the treatment so my mind was mushy with nerves), but then with further tweaking he got it down to just 2 planes and 1 hr.  This is incredible news not just because the treatment was faster, but because it means less collateral damage to my brain.   Essentially, he was able to target all of Lloyd with fewer beams than expected!  The less radiation that went through my healthy brain, the better!  Thrilling!!!  Thank you, Dr. Phys!!

I saw Dr. Rad Onc briefly yesterday, and he said that everything looked terrific.  He said he'll see me in two weeks, but to call before that if I notice anything weird.  I asked him for some hints on what I should look for, and he said difficulty finding words, different headache, any neurological symptoms at all.  But I definitely picked up a no-big-deal vibe from him.  My non-scientific impression from conversing with him is that this all went so well that he's really not expecting anything adverse from me.  I could be reading more into something that isn't there, but I don't routinely get this impression from doctors so I'm hopeful. 

I'm doing my part to prevent adverse reactions:  I slept in until 10; ate oatmeal with raisins, pecans, and coconut on top; went for a walk with the spouse and dog; and am preparing for a nap after this blog post (and a bowl of cabbage soup).  My body feels terrific but I know that I must force myself to rest, because that is what my brain needs!  I do have a slight headache, but it's not different than before treatment.  My brain has got all sorts of problems that can only be solved by rest and time. 
Thanks for being here with me! <3

Sunday, January 7, 2018

Preparing for the demise of Lloyd

Auntie J and family:  Thank you SO much for the bowling gift card!  It was just what we needed today to get our mind off of things.  We haven't been bowling in ages, and we had a ball even though we were all pretty terrible.  It was also special because my mom was here, huzzah!  And she earned a new nickname today:  Gutterball Grandma.  So thanks for that.  ;)

Today the girls treated me to a joyous day.  My youngest in particular, who is an 8-year-old that is all heart, said that she really wanted to do as many fun things with me as possible before I start to feel sick after the SRS treatment.  Sweet little peanut. 

First on the agenda, after I made pancakes and omelettes, was walking downtown to a coffee shop for hot cocoa and chai and coffee.  Today was blessedly warm compared to the deep freeze we've been stuck in, so it felt wonderful to be walking about in the sunshine.  We even stopped at the grocery store parking lot to climb the snow mountains and slide down.  So much joy.

Then we went home, got in the car, and drove to the bowling alley.  I personally wasn't sure about going bowling with the condition that my head is in, but once the girls caught wind of a bowling opportunity they could see no alternative path forward.  It ended up being just fine.  The facility wasn't as crazy-awful busy as we've experienced it before, and they were playing old music instead of modern pounding music (i.e., Van Morrison's "Brown-Eyed Girl", etc.), so I really didn't mind it at all.  Plus, the girls ADORED it.  They each got a spare and danced with joy.  I broke 100 each game, woo hoo!

After that it was time for A's girl scout meeting, so E, my mom, and I folded laundry and did the usual Sunday chores.  Nearing bedtime, I had one more item on my agenda:  make a Lloyd-fighting crown!  My oldest, A, who is 10, was delighted to take charge of this task.  First, she asked to see a picture of Lloyd, and so I showed her the high-resolution contrast pictures of Lloyd that I snapped at my appointment on Friday.  I don't even need to point Lloyd out to you on these ones; he's blatantly obvious. 

This is such a cool picture.  On this picture, my oncologist explained why Lloyd causes headaches.  In addition to the little bit of swelling (dark gray) you can see above Lloyd, the main cause of headaches is the pressure Lloyd puts on the midline of the brain.  There's supposed to be a straight line in the center of the brain, and Lloyd is pushing mine to the right.  That's painful, apparently.  

Then, she sought inspiration for the crown's shape.  Gutterball Grandma suggested wonder woman's crown, so we looked that up and thought it was a terrific template.  Finally, she wanted input on what to write on my crown.  I suggested a phrase from her own life that she might loan to me for tomorrow:  "You're toast!"  It's the name she gives herself when she sets the high score in, which is a game she enjoys on her iPad.  Armed with these ideas, she set to work.  I was allowed to help color the letters.  It was so peaceful to end our day coloring a Lloyd-fighting crown together. 

And she's wearing the perfect shirt for today!  "When in doubt, Rule it out!"  It's the t-shirt that my dad made to accompany this blog and to raise IBC awareness!

Look at that tongue!  Such concentration.  :)

On the far right of the crown, perhaps if you zoom in, you can see that she's drawn a slice of my brain, and Lloyd is a blue mass inside of it.  

The back of the crown says, "Goodbye, Lloyd!"  (not shown). 
It's not a contest, I know that, but I really do have the best kids.  I'm so proud of them.  They are doing a great job of being brave and strong and positive.  

Saturday, January 6, 2018

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!

Thursday, January 4, 2018

The masked woman

What a productive day this was against Lloyd!  I started off the day with a high-resolution MRI, which only took about 10 minutes.  The difference between this MRI and my MRI on Friday is that I was in a different machine that can take higher resolution images, down to the nearest 1 millimeter.  Wow!  That's impressive!  The Medical Physicist (let's call him Dr. Phys) needs this level of precision in the images so that he can design the radiation treatment exactly to the dimensions of Lloyd, the metastatic breast cancer tumor so rudely squatting in my brain. 

Later in the day I had to go back to the clinic to build my mask for the SRS treatment.  The purpose of the mask is to hold my head in place very snugly so that I don't move more than 1 millimeter during the SRS treatment.  Do you see the pattern, here?  This 1 millimeter of precision?  That's so that they minimize the damage to the non-Lloyd parts of my brain.  

The mask is made out of very hard plastic.  First, I had to lay down with my head between these blue brackets that were screwed to a board.  Then, they took strips of heated-up plastic and wrapped it around my face, including pushing it down over my eyeballs, all around my nose, and across my upper lip.  The rest of my mouth and chin were perfectly free.  They also had one piece of hot plastic to put around the back of my head, up by where my head is attached to my neck, but the rest of the back of the mask was not molded to my head.  Once they had the pieces in place to their satisfaction, they somehow snapped them into the blue brackets.  So I was penned to the table by my head, which was a bit of a weird feeling.  Fortunately the plastic is white, and a bit meshy, so I could see through it a little bit if I chose to open my eyes (but it was more comfy to keep my eyes closed and transport to somewhere else, I assure you).  

I had to lay perfectly still in the mask for 30 minutes while it cooled.  This was the hardest part because as the mask got harder, it became harder to swallow.  Swallowing while lying down is not very easy anyway, but then when you find that your nose is locked in place it turns out that your head bobs quite a bit when you swallow while lying down!  I then spent a good 15 of my 30 minutes first deciding on whether or not I should just let the drool pour out of the side of my mouth, and second planning for how I should deal with this on treatment day.  Would my mouth water less if I brushed my teeth at a strategic time before treatment, say, an hour before hand?  If I brush my teeth too proximal to treatment then the toothpaste residue will have a strong salivating effect.  I certainly will need to be sure not to eat right before treatment, as I blame proximal luncheon to maskmaking for my swallowing discovery today.  

After the mask cooled, they unbolted me from the brackets then sat me up with the mask around my head.  Whew, it was heavy!  Then they added a box over the entire the mask, which made the situation even heavier.  The purpose of the box is to add what I'll call gridlines for Dr. Phys.  At least, that's my interpretation of how he explained it to me.  The box goes on in a defined orientation and has lines in it that show up in the images, thus allowing Dr. Phys to be oriented in space relative to my head.  I suppose it's like helping him know that my tumor is at the 40 yard line, or 30 yard line, etc., rather than just being a tumor in an unmarked field.  With this box on my head, they laid me back down and bolted me to the blue brackets again.  Then--CT scan!  This was another high-resolution scan of my brain, and the entire mask-making process had conveniently taken place on a CT scanner table, so all they had to do was slide the table in and out of the tube a couple of times to get some shots of my head.  

I asked if I could take some photos, and they didn't mind.  So, without further ado, here's my mask:

Here's my mask, bolted to the table, photo taken from the left side of my body.  My forehead would be on the right, my chin coming out on the left of the photo past the blue bracket.  You can kinda see my nose near the blue brackets there on the upper left of the mask.   

This is looking down on the mask from above.  You can see the nose plate in the darker white, and the meshiness of the majority of the mask.  It's not too bad!  I'll get to keep it after treatment, then you can come check it out anytime.  The laser that you can see vertically in the picture is used to line up the patient for sliding into the CT scanner, which you can't see in the photo but is just north of the mask in the picture.  The black table below the mask slides a whole body into the tube.  Pretty amazing! 
Hopefully you can appreciate that although it's a little bit uncomfy (certainly not a pillow), it's really not that terrible.  Dr. Phys said he's claustrophobic and didn't know if he'd be able to do it!  I just blinked at him a couple of times and said I bet he could if he had a brain tumor.  You do what you gotta do, people!  Just close your eyes and breathe.  You've got this! 

So then while I was putting my snow gear back on to head home, Dr. Phys offered to show me my CT scan.  Clearly I snapped a photo of Lloyd for us.  
Here's a frame of my brain (my nose would be on the top of the circle, the back of my head at the bottom, my ears on the right and left).  Can you spot a slice of Lloyd?  Hint 1:  the black parts are normal; look for Lloyd as an irregularity in the gray parts.  Hint 2:  Lloyd looks spherical by this angle. 

Here I've drawn a yellow arrow to point out Lloyd.  I tried to circle Lloyd but that was less clear, so hopefully you find this to be a favorable notation.  If you can't see Lloyd, I apologize.  My goal is to get a picture of Lloyd from the High-res MRI.  I saw a hint of Lloyd via MRI last Friday, but I was too stunned by the news to snap a picture.  Lloyd looks VERY ugly and irregular by MRI.  

He said that he'll overlay these pictures with the high-res MRI from earlier in the day, to do the math and make the radiation plan.  He said it might take him a little bit longer than usual to make the radiation plan because Lloyd is not a good little sphere; Lloyd is irregularly shaped.  That's because Lloyd grew where he could make room, and clearly my brain didn't yield to his spherical desires!  Related to this, I asked Dr. Phys if Lloyd was tangled in brain tissue or growing more or less independently from the brain tissue.  Happily, his response was that Lloyd is independent, a true squatter.  Surrounded by brain, but not integrated.  This explains why they expect so little brain damage, but it was nonetheless good to hear.  

So, if Dr. Phys gets the math and mapping done, treatment will be on Monday, Jan. 8th, at noon or 4pm.  If Dr. Phys needs another day, it'll be Tuesday, and so on and so forth.  But odds are good that treatment will be early next week.  

Also, I shared with Dr. Phys that the tumor's name is Lloyd, and I needed him to do a good job of targeting Lloyd.  He complimented me for naming him and said that he'll do his very best at targeting Lloyd.  Welcome to the team, Dr. Phys!  

Last item of the day:  I might have realized how I subconsciously arrived at the name of Lloyd!  At the dinner table I was telling the girls about my adventures today, and I showed them the picture of my brain and pointed out Lloyd.  I hadn't shared with them before tonight that I'd named the tumor Lloyd.  My oldest daughter said, "Oh!  Lloyd!  Like the Masked Man in Land of Stories!"  The Land of Stories is a children's chapter book series that we've been reading aloud to the girls for awhile.  We're on book 6, they are very good books and I highly recommend them.  (I've actually only read half of the books because my spouse and I take turns reading, so I'm having faith that the even chapters are as good as the odd ones.)  ;)  Anyway, in a few of the books there is a villian called the Masked Man, and his name is Lloyd.  Spoiler alert:  the Masked Man totally gets defeated, killed in fact.  Sorry about the spoiler for anyone about to go and read the books, but I find it remarkably perfect that my subconscious chose the name of a masked villain for a brain tumor that requires a mask to defeat.  Thanks, Brain!  You're amazing!  Keep up the good work!   

I have no appointments tomorrow so I'm going to try for a somewhat normal day.  It'll probably take most of the day just to get my head out of the cancer clouds.  Wish me luck!