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.

Olympian in cancer-treatment recovery

I've turned into a recovery athlete--my hamstrings were tight and sore when I got out of bed this morning!  Ha!  That's a new development that both cracked me up and provided reassurance that I'm on the right track.  I mean, I know that between the exercises and the protein I'm getting stronger every day, it's just that I'm so eager to BE strong.  My legs are still so very heavy, and I still have bouts of whole-body fatigue.  That's when I sit in my chair with a hot cup of decaf black tea and close my eyes.  Or I lay down for my nap.  Don't worry, I've still got this.  I'm listening to my body. 

On Thursday I decided to skip my lunch steroid, meaning that I'm now only taking 2 steroid pills each day, huzzah!  This was a difficult decision because I had had pretty comfortable brain pressure for two days, and it's really really hard to chose discomfort over comfort. I was worried that cutting a steroid would increase the brain pressure.  It did, and I still have an increased level of brain pressure compared to Wednesday, but I can do this and it's not as bad as it was weeks ago.  I toyed with adding half of a steroid pill at lunch yesterday because the pressure was bothering me greatly, but I didn't and I've stayed disciplined and kept off the lunch steroid.  Each day the the brain pressure is less (better) immediately after my workout and after yoga, so my body just needs a chance to do what it does best:  heal.  And it's all about balance, because getting off of the steroids will help with the external pressure in my head (my face is so swollen from the steroids that sometimes its hard to discern between brain-swelling pressure and face-swelling pressure), and with the digestion, and with my stiff joints.  The other steroid thing that happens is that apparently when you're taking high doses of steroids like I was, your body's adrenal glands quit making natural steroids.  So my adrenal glands need to start back up again, and that will happen gradually as my oral steroid dose decreases.  I can do this.    

Digestion is still great, huzzah!  My new diet it not that hard now that I'm used to it (lots of yummy peeled root vegetables (I added beets, and eggplant, and radish to my vegetable list, huzzah for diversity!!), peeled fruits, canned fruits, avocado, banana, cooked spinach, nuts, eggs, peanut butter, some dairy, white starches).  I've been doing a lot with this and having fun trying new things.  I adapted this spinach soup recipe for my diet.  I roasted the garlic and I used ~5 cloves, I skipped all vegetables except spinach and potato, I added a dash of onion powder and turmeric, and I finished the soup with a splash of soy sauce, for Umami.  Pretty tasty!  Next week I'm going to try making eggplant bacon, lol.  Cooking the eggplant in a smoky sauce and having a sandwich sounds good.  I might not worry about getting it quite so thin and crisp--seems like the nutrition would be gone from it.   

Other achievement:  I finished a book!  My mom, B, loaned me The Paris Wife, by Paula McClain, and it was just the escapist fiction I needed to help me relax into my nap.  I'm a big fan of Ernest Hemingway and I've read many of the novels that he wrote while in Paris after WWI. This book is historical fiction about their life in Paris together as he wrote his novels and they built and destroyed their marriage.  It was a fun and easy read.  Now I've started Alias Grace by Margaret Atwood and it is awesome so far.  Huzzah for gently turning on my brain!! 

Oil for my family.4:  Monday is the spouse's birthday, so today the girls and I baked a chocolate cake from scratch.  He chose chocolate, and A said "not too rich, though!", so that ruled out my all-time favorite flourless chocolate cake recipe and my second favorite brownie chocolate cake recipe.  Many of the chocolate cake recipes I've tried turn out dry, so we tried a chocolate-mayonnaise cake recipe from a cookbook my grandma gave to me.  The girls were super skeptical about the mayonnaise, but I'm 90% sure that it will yield a moist, chocolate cake.  It seemed to be moist when I took it out of the round cake pans earlier.  We're using a chocolate frosting recipe from a different cookbook and will finish the cake tomorrow.  

Bliss list item 13:  I co-lead my youngest's Girl Scout Troop when I'm well, and my co-leader made me a poster (it's almost as tall as E!) and had all of the girls sign it.  It is so darn precious!  Thank you so much, ladies!  You're very thoughtful and kind, and I miss you, too!  I love you, friend A!       

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.          

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! 

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.  

        

Chemo eve, round 3

What does one do on the eve of one's third round of chemotherapy?  When one knows precisely how crappy one is going to feel and for how long?  When you still have more rounds of chemotherapy ahead of you than behind you?

One eats.  And eats and eats and eats.  Thus far tonight I have had three falafels, some hummus, and cucumber slices while I cooked dinner.  For dinner I had bulgogi (seasoned chickpeas), roasted cauliflower, half of a grilled cheese sandwich, wilted kale, garlic bread, and strawberries.  Plus, I've eaten two homemade sugar cookies that my daughters decorated for Easter.  I've got my eye on some chocolate milk for a snack later.  

Hopefully these delights will carry me through my nauseous BRATY week.

I also have a long walk ahead of me.  I'm headed out in a few minutes to get some exercise while I can.  Hopefully it's not too windy out there.

In all seriousness, I'm actually a bit pensive about tomorrow.  Today a poem came to mind in thinking about chemotherapy round three tomorrow.  I hope you like it.

INTO MY OWN by Robert Frost

One of my wishes is that those dark trees,
So old and firm they scarely show the breeze,
Were no, as 'twere, the merest mask of gloom,
But stretched away unto the edge of doom.

I should not be withheld but that some day
Into their vastness I should steal away,
Fearless of ever finding open land,
Or highway where the slow wheel pours the sand.

I do not see why I should e'er turn back,
Or those should not set forth upon my track
To overtake me, who should miss me here
And long to know if still I held them dear.

They would not find me changed from him they knew -
Only more sure of all I thought was true.  

The dietary post

Last Tuesday, as I was fading into my 4th working hour, my colleague S. popped into my office and sweetly asked whether or not I still wanted her to bring dinner for my family that night.  Still?  I had no idea that anyone was planning to bring me dinner that night.  Her face transformed into a wry smile as she told me I'd better check on the meal sign-up that the L family had set up for us.

Oh my goodness!  I can't believe everyone's kindness!  Folks have signed up to bring us supper every Tuesday and Friday throughout my chemotherapy program.  These meals are so much more than we expected, and they will be incredibly helpful to my family.  We are grateful.  

Related to the meals, I have been answering a lot of questions about my diet.  I've been a vegetarian for almost 15 years, and although this is ordinary for me, I recognize that many would-be chefs aren't sure what to do without meat in the meal.  I appreciate everyone's attempts to cook vegetarian for us.  Maybe you'll find a recipe that you'll add to your repertoire.  Also, I added a "recipe" tab above in which I am going to post recipes for the delivered meals (if the deliverers provide them to me).  The first recipe is the meal that was delivered last Friday night.  So tasty! 

I'm still taking a blood thinner (warfarin) to give my body a chance to dissolve the blood clot in my jugular vein.  This is relevant because vitamin K interferes with warfarin's ability to thin my blood.  I am therefore supposed to eat a consistent amount of vitamin K so that the dose of warfarin stays effective.  Note that I'm not supposed to avoid foods containing high amounts of vitamin K, such as kale and spinach, merely to eat them consistently.  The only time this is a challenge is the week after chemotherapy when eating in general is off the table.  My vitamin K consumption is probably somewhat consistent otherwise.  Salad season is upon us, so if my vitamin K consumption gradually increases my oncologist will be able to see that in my bloodwork and increase my dose of warfarin.  No worries.    

The major dietary bummer is that I can no longer drink tea.  I LOVE tea, especially green tea.  I have been drinking a cup of green tea nearly every day for several years.  The reason I can no longer drink tea is because it is high in antioxidants.  I am no longer supposed to take antioxidant supplements, and tea counts as a supplement.  Dr. Oncologist also told me to stop taking the daily vitamin that 3 years ago she told me to start taking.  

The explanation for this is rather ground-breaking.  Earlier this year a study was published showing that antioxidant supplementation of the mouse diet led to three-times larger tumors in mouse lung cancers.  Also, the antioxidant-supplemented mice died twice as fast.  

The scientific and medical community have been dancing around this conclusion for years.  Previous antioxidant supplement studies had not shown benefits in folks who already had cancer, and sometimes supplementation led to worse outcomes.  The paper published in January begins to define a mechanism for why lung cancer likes antioxidants, and I'm sure that studies with other cancers aren't far behind.   

To be clear, all of the research is focused on supplementary antioxidants.  There is no information to suggest that I should be avoiding foods that are high in antioxidants.  Besides, I still have a body full of healthy cells that I'm sure could use a few antioxidants now and then.  Dr. Oncologist says to eat my normal, healthy diet, and simply avoid supplementation with antioxidants.          

In the meantime, does anyone want my bottle of daily vitamins?  It's almost brand-new.  I also have a nice stash of tea, so when you come visit remind me to brew you a cup.