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.

So how's my brain doin' these days, anyway?

On Thursday I had an MRI and consultation with Dr. SRS Expert/Radiation Oncologist at the University Hospital down the road.  Per usual, it was a lovely road trip with my dad (thanks again for picking me up, dad!  It sure was luxurious to rest on the drive home!!).  The MRI didn't show anything that my body wasn't already telling me, but it sure is validating to see the pictures, and most importantly, it's terrific to have the opportunity to talk to the doctor.  In summary, the two important results are 1) Lloyd continues to be dead, with the following being my favorite things in the report, "The previously described heterogeneously enhancing metastatic lesion is overall stable in size. No new lesions." and 2) swelling is slightly decreased but still pretty bad.  I could have told you that, lol.  I feel it daily. 

SO, more on the swelling!  We had lots of questions for the Doc on this one.  If Lloyd is stably dead and not growing, what's up with the swelling?  Why is my body continuing to mount an immune response up there???  Potential answers, in no particular order:  1) A few stray cancer cells could be mucking about, and my immune system is trying to catch them, 2) Extended swelling like this is more commonly seen when the tumor is in a location such as mine, close to the spinal column, 3) It's not uncommon for this to go on for 2 years even!  Wow. 

Taking steroids is the primary thing to do to combat the swelling, and yet alllll of my physicians are wanting me to get off of the steroids, even Dr. SRS Expert (I mean, I'd like to be off of them too...).  I tried the steroid step-down he prescribed last time (12 mgs daily for 1 week; then 8 mgs daily for 1 week; then 4 mgs daily for 2 weeks).  I'm stuck on 8 mgs per day.  Twice now I've tried to decrease the dose, with noteworthy awfulness.  Not only do I feel terrible the day after I decrease my dose, but I have a few minor neurological symptoms now!  If the swelling gets too bad, I have tingling/numbness on my forehead, the tops of my hands, and my right pinky.  I don't care for any of that specifically, but I especially don't care to get started down the road of long-term permanent neurological side effects, so I'm not rushing the steroid step down until I have some REALLY good brain days.  And each day is different, so I have no idea when they'll come.

He did mention that depending on where we're at with swelling and steroids, there IS another drug we could try.  It's called avastin, and I haven't spent MUCH time researching it yet, but here's a popular press article that conveys what I feel is sufficient information to get us started.  In the article it's used to combat necrosis, which doesn't seem to be my problem, but there are also other articles showing that it's been used to combat swelling (edema).  I didn't link to those because I found them to be harder to read.  It's an IV drug, so it would be administered by Dr. Oncologist on some schedule or another.   Point is:  OPTIONS.  There continue to be options, huzzah! 

My next MRI is in ~two months.  I'm sure that my body will make some more progress between now and then! 

The steroids are particularly hard on my quad muscles, steadily making my body weaker and weaker.  Dr. SRS Expert reminded me of this (not that I need ANY reminders of this, lol).  I told him how hard I'm trying to not to get terribly weak: I walk the kids to school 1.4 miles roundtrip daily; 30 min. aerobics in living room almost daily; yoga class once per week; 15-30 min. yoga at home almost daily; choose to take the stairs in tall buildings (when I can find them).  He gave me a "good job"!!!  I didn't realize how much I was in need of this affirmation!  He said something like, "I like how much you're exercising."  Yay!  I figured it was good for my brain by promoting oxygenation, but it was still nice to have a medical professional endorse the exercise routine that you are undertaking when your brain feels like it weighs 40 pounds!  And on the bad days, I don't push it.  I listen to my body.

The other thing I'm trying is diet.  I have avoided the diet/homeopathy rabbit hole because the data just aren't there, and why give myself another source of stress.  But one place there seem to be data are on low sugar diets helping kids with epilepsy to have fewer seizures.  I'm being VERY non-scientific here, but I'm not a kid with epilepsy or even an adult with seizures, but cutting sugar isn't a hard thing!  And it's something I can do with relatively low-stress.  I talked to Dr. Oncologist about it at my last appointment about a month ago, and she was on board as long as I didn't cut all carbohydrates.  No ketogenic diet for me, just high protein and cut the processed sugars.  Clearly I still have lots of brain swelling so this is not a slam dunk solution, but it's something I can control and that feels good.  Also, avoiding processed sugar is a good thing for all sorts of reasons.  Oh, and I added fish to my diet.  Fish is high in omega 3's fatty acids, which are good for brain health.  So I'm now a pescatarian instead of a vegetarian, and I rather like it!  Fish is pretty tasty!   

C'mon home, optimism

After my last post, my friend M messaged me to say that it sounded like I still needed to wrap my head around something.  I would have to agree with her, and the struggle is real.  But I wasn't sure what on earth I needed to wrap my head around.  Unfortunately, this unsettled feeling only grew for me over the past week as the various priorities for living were flying around (sick kid, special workshop at work, lovely weather, time with friends, etc. etc.) and I had to decide what to give my energy to.  I realized that a large part of my struggle was simply mortality, and the certain uncertainty of it.  I don't struggle with this very often, but I think I was acutely struggling with it last week amidst the lack of answers to my questions and the beginning of summer break for the kids.  As in, "whelp, Lloyd isn't smaller, so do I need to quit my job and spend every waking hour with my family?"   

Today, friends, all of my questions were answered beyond satisfactorily.  Today I saw Dr. Radiation Oncologist here in town.  I have not seen him for an appointment in three months.  I only saw him briefly for the Girl Scout tour [which, BTW, his team LOVED doing and today many of them said that they'd love to do it again!  They asked if I'd be interested in doing it again next year.  I said maybe another troop would be interested in a tour.  So, if you're a GS troop leader in the area and would like for your troop to tour Radiation Oncology, they'd love to have you and I'd love to help you set it up (as needed/desired).  I even found a "hospital tour" fun badge for the girls.  Huzzah!]  I didn't even get to see Dr. Rad Onc when I got the bigger-Lloyd result in April because Dr. Oncologist consulted with him in my absence (because I already had an appointment scheduled with Dr. Oncologist--she's my quarterback, remember?) and they both recommended that I go straight to the University hospital and consult with a surgeon.  SO, he's been a contributing member of my team, but I have not had the privilege of a consultation in a long while.  I laid all my questions on him today, and he did not disappoint.  He is a WONDERFUL teacher and brings lots of compassion, which is very helpful when discussing facts that have potentially unpleasant repercussions.  He even said that next time I have questions, I don't have to wait for the appointment, he'd be happy to meet me at the coffee shop or something.  Holy cow. 

My first question was about the biology of Lloyd.  Lloyd was smaller in February, bigger in April, and now unchanged from April.  Why?  Answer:  Dr. Rad Onc firmly answered that Lloyd being unchanged from April to now tells us that the bigger-ness of Lloyd was/is due to my immune response to Lloyd and not to Lloyd growing.  (This is what I THOUGHT but really needed to hear in plain English from a professional, especially since Dr. SRS expert at the University hospital said that he doesn't usually see this.  I would think everyone's immune response would be quite different, and size differences due to immune response would be fairly common, especially with the lack of protocol to the dang steroid doses.) 

My follow-up question, then, as you can imagine, was about the dang steroids.  If we want Lloyd and brain swelling to be smaller and less, respectively, and the MRI suggests that my immune response is making Lloyd and swelling NOT smaller, why are we resuming the steroid step-down?  Answer:  Dr. Rad Onc emphasized the badness of long-term steroid use (as others have said), so it's important to get off of them as soon as possible.  But not at the expense of the brain swelling.  The key is to be decreasing the steroids as the body's healing has increased.  In April when I was trying to get off of the 'roids, presumably I had a lot more swelling.  I was closer to the SRS treatment.  Now, two more months have progressed in my brain healing, so hopefully as I wean off the steroids I won't experience such an increase in swelling.  So, I'm hopeful that I'll get off of them this time!  He said to step back up a dose if I experience an increase in head pressure (i.e., same instructions as previously).  I've been on 2 mgs a day for nearly a week, and I'm feeling pretty darn good.  WAAAAAY better than when I was trying to step-down the 'roids in February/March, although I'm taking my dose in the morning (HUZZAH) instead of in the evening, and this definitely makes a difference.  I felt crummy for only like the first 2 days of the new dose last week, then I've felt pretty fine since then.  I can't say that I've noticed a difference in head pressure, except for those first two days.  Huzzah!

Then I asked about the long-term projection for the swelling/healing.  Will this brain pressure turn into the new normal for me, or is it reasonable for me to envision a recovery goal with no brain swelling?  He said he can't be sure, but it certainly is possible to heal to a place where I essentially don't have brain swelling.  Huzzah!  I'll make it happen!  Hungry orchid meditations every day! 

This conversation was going so well that I decided to throw in a question related to the mental grappling with which I started this post.  I told him that way back in January, Dr. Oncologist told me my prognosis, and that she did so by saying that people in "this situation" usually live 12-24 months.  I asked him, what is meant by "this situation", and how does that relate to my current situation?  Is "this situation" any brain tumor, or a tumor of Lloyd's size, or patients with long-term brain swelling, etc. etc.?  I can see many ways to define "this situation", so now that I find myself with an immune response making my scans show variable Lloyd sizes, I want to better understand what exactly "this situation" is.  Now guys, I'm not one to focus on prognosis statistics, but seriously I'm either 1/2 or 1/4 of the way into my 12-24 months, so I decided I needed to better understand what causes the statistic in order to evaluate how much it does or does not apply to me, and quite frankly how to spend my time!  And here Dr. Rad Onc and I had a terrific and very much relief-imparting conversation.  He said that yes, "this situation" is metastatic cancer in the brain, and the reason for the 12-24 month statistic is because usually it is a sign that there is uncontrolled cancer somewhere in the body.  He also said that typically people have multiple brain metastases that have been spit off from this elsewhere-in-the-body cancer.  He pointed out that unlike the data underlying the statistic, I continue to have NO EVIDENCE of cancer ANYWHERE else in my body, and I only had ONE Lloyd, which at this point seems to have been treated effectively.  He said that with my current data (PET and MRI scans), it's less likely that I'm going to fall into that 12-24 month category (but of course, no one knows when or how they're going to die).  So, every clean PET scan and every MRI with no new brain tumors improves my prognosis, guys!  Huzzah!  I told him that I was grateful for this explanation, and that this will help me in my day-to-day living.  I also told him that one of the reasons this question has been on my mind is because it's summer vacation for the kids, so I've been worried that maybe I'm supposed to quit my job and spend the summer with the kids or something, but I love my job and my kids love camp so...  He smiled really big and said conclusively that it's too soon for that.  Yes!  That's what I thought!  Wow was that ever good to hear.  I assured him that I'll still live with gratitude, and make responsible choices for someone who is recovering from a brain tumor, but I won't live in fear of the ticking clock.  Oooh and this post was a good one to re-read for my current mental grappling. 

These comments about uncontrolled cancer elsewhere in the body made me think about where on earth Lloyd came from.  Since Lloyd was so big (3 cm is big), I wondered aloud if rather than uncontrolled cancer elsewhere in my body, perhaps Lloyd slipped past the last breast cancer treatment and has been growing up in my brain for the intervening three years, protected from the continued Herceptin and Perjeta treatments by the blood-brain barrier and mysteriously not showing up on my quarterly PET scans.  He said that that was certainly a possibility.  (I also remind you, reader, that I am now taking a drug (neratinib/Nerlynx) that is supposed to inhibit all new Her2 cancers everywhere in my body, including my brain.)   

So, I will pick up my optimism from the ground (sorry, optimism--here, wipe yourself off with this Clorox wipe) and stow it safely back in my heart.  What a roller-coaster week of appointments.  So grateful for all of the talented medical professionals in my life, and all of the different strengths they each bring to my care.   

Lloyd might be Pearl

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

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

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

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

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

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

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

Thank you all for your love and support!           

Alternative Hypotheses

Yesterday, the only hypothesis as to why my tumor (Lloyd/Pearl; henceforth called Lloyd in this post because he does not get to be called Pearl when he's misbehaving) looked bigger than it did on the February scan was that Lloyd was growing.  This was alarming, and more than a little bit disappointing.  Today, in happy contrast, we were presented with several alternative hypotheses.

First, let's explore what we learned in regards to the possibility that the tumor is growing.  My spouse, my dad, and I met with Dr. Neurosurgeon (and his resident) at the University.  They were very knowledgeable and helpful!  After interviewing me and gaining a complete understanding of the situation, Dr. Neurosurgeon's preferred course of action was to do another brain MRI in 7 weeks.  He said that no urgent action is needed because I'm not experiencing adverse symptoms (besides the headaches--truly adverse symptoms would be seizures, or trouble swallowing, or loss of small-motor control).  If in 7 weeks the scan clearly reveals that Lloyd is growing, he said that yes he'll be able to surgically remove it for me, and that yes I would still be "me" afterwards.  Huzzah!  He even said that he's seen hundreds of cases like this, so it's really no problem for him.  That was reassuring! 

OR MAYBE...

Dr. Neurosurgeon also said that it's possible that Lloyd is not actually bigger, but that due to my head being positioned in the MRI tube slightly differently each time, perhaps the imaging revealed slightly different slices of Lloyd, making the measurements appear to be different each time.  This is perhaps not the most favored hypothesis, but it's one of them.

OR MAYBE...

Dr. Neurosurgeon wanted to get the opinion of one of his colleagues down in Radiation Oncology.  So, we sat in the exam room FOREVER, getting quite HANGRY, as his nurse tried to finagle a same-day appointment for us.  Success!  And I'm extremely grateful, because this was the highlight of the past 24 hours!  After a quick bite in the cafeteria, we walked to the far end of the hospital to the Radiation Oncology department.

We first met with Dr. Resident Radiation Oncologist, and she was phenomenal.  She had terrific bedside manners and was very knowledgeable.  She and I quickly put together the relationship between my scan dates and my steroid doses.  That is, my February let's-celebrate-Lloyd's-death scan result was correlated to a steroid dose of either 4 or 8 mgs (I haven't figured it out precisely, but it's certainly one of these), and my April-holy-shit-Lloyd-is-growing scan result was correlated to a steroid dose of 1 mg every other day.  When Dr. Radiation Oncologist came in, he said that the image of Lloyd in yesterday's scan doesn't look like a growing tumor; it looks like a dying tumor that is attracting the attention of the immune system.  He said that growing tumors have a spottiness to them, but Lloyd currently looks like a cotton ball, and this is consistent with tumor necrosis (death).  So, he agrees with Dr. Neurosurgeon's course of action, but in the meantime he'd like for me to further increase my steroid dose to 2 mgs twice per day to get that pesky immune system under control in my brain.  Left unchecked, it can damage my healthy brain tissue while it is working on Lloyd.  In short, the result of yesterday's scan revealing a larger Lloyd could be a side-effect of stepping down my steroid dose to be a bit too LOW.  The hypothesis is that the awesome scan result of February was made possible by the higher dose of steroids controlling the immune response in the brain. The plan is to continue on a slightly higher steroid dose (no more step-down for now) and hope that this decreases the swelling and the necrosis, and hopefully the next scan will look as promising as the February scan.  And this, my friends, is the prevailing hypothesis at this time.

REGARDLESS, I have 7 weeks to continue healing, pop the steroids, and not worry about a thing because there's nothing I can do.  Many available options ahead, and we'll have a clearer picture of the way forward in 7 weeks.  For now: just keep swimming, just keep swimming, just keep swimming...

I am EXHAUSTED.  It feels like a final exam day in undergraduate--the stress, the performance, the release.  Time to do some yoga and go to bed.  Thank you for your love and support, both near and far!  I appreciate you!

Golly!

Some belated thank yous (there are probably others...things arrive and I don't always catch them in a timely manner [my desk (life?) is chaos after 2 months of Lloyd recovery], so my apologies if I've missed an acknowledgment these past few weeks).

G&G:  Thank you for the teddy bears!  That was so thoughtful of you to send them from Texas.  The girls were thrilled.

Mystery person:  Thank you for the cookbook.  It has some tasty-looking recipes that I look forward to trying.  Perhaps the cookbook is just a loan from a neighbor or friend, because it was laying against my door one day, but I can't return it if I don't know who left it.  :)  My apologies if I've lost an accompanying note.  

I'd say that the hbomb has recovered up to maybe 40-50% capacity at any given moment.  Sometimes my physical prowess feels better than that, like the day I did a 2 mile Leslie Sansone walk AND took the dog on a short walk outside (let's have a moment of gratitude for ice-free sidewalks!!!  HUZZAH!!).  And sometimes my physical prowess is worse than that, like the next day when I was WASTED tired from what was likely too much physical activity on the day described, so I skipped all exercise except for yoga, and I rested and slept and started muttering, "golly" to myself.  And sometimes my brain feels better than that, like the morning I visited with my friend/neighbor and truly enjoyed myself (i.e., the act of engaging in a conversation didn't feel like a chore).  Rarely are both brain and body feeling powerful at the same time, however.  And all of it is so much worse in the evenings, which is a bummer because that's when the family is home.  But, it's all forward progress, isn't it?

(The "golly" sidebar:  I wanted some tea, so I tried to get up and make some tea but was surprised to find that I was a bit stuck in the chair due to my exhaustion, so I said "golly," then I managed to extricate myself from the chair only to realize how heavy my legs were when I tried to walk so I somewhat breathlessly said, "golly," again.  I've been saying it ever since, in moments of quaint, exaggerated incredulity at my own struggles, I suppose.  The full thought is something like, "Golly I'm surprised that this task is so difficult! What gives?"  Or, when kids aren't around, "WTF?"  Or the following phrase shared by my friend P, "What fresh hell is this?")

My quadriceps muscles are strengthening.  I'm getting better at standing up and at going up the stairs (the "golly" story notwithstanding).  Although at the end of the day it's all a wash and fatigue overrules.  But in the mornings I can very nearly go up the stairs like I usually would.  Nearly. 

I'm getting oh so close to cutting my steroid dose in half, but I haven't done it yet.  I'm trying to be more patient than last time and to more honestly evaluate "no brain swelling".  For example, I might have very little brain swelling for most of the day, but then feel acute brain swelling all evening (while my body waits for the steroid to kick in I suppose), so I wonder if I should feel no (or at least significantly less) evening brain swelling before deciding to cut my steroid dose?  What I do know is that when Dr. Radiation Oncologist asked me about the steroid step-down, he asked about the brain swelling, and when I told him that I wait for two days of "no brain swelling" before cutting a dose, he emphatically said "good".  So I think it's pretty important that I feel comfortable in the brain before cutting my steroid dose.  The last time I cut my steroid dose I had a lot of brain discomfort, so I probably cut the dose a bit too soon in my eagerness to be off of the steroids.  Regardless, the brain swelling is steadily decreasing day by day, and hopefully I'll recognize "no brain swelling" when it happens.

I don't really sleep in the afternoon anymore, huzzah!  This is probably because I'm sleeping better at night.  I routinely sleep 10-12 hours at night, which is glorious.  In the afternoons I still need eyes closed time, and I still need bodily rest, but I don't need sleep at that time of day.  That's likely freed up a bit of my recovery schedule, although I can't report what I've done with that free time.  I think I still spend it lying down, lol.  The fatigue continues, but it's not as bad as it was.  Healing a brain is energetically expensive, I guess! 

I conserved my energy on Thursday so that I could accompany the girls to Science night at their elementary school.  I was glad to be there with the family, and the girls appreciated that I could share the activities with them.  They had a ball, and I managed to find a place to sit whenever I needed one.  No problem.  I also ran into several friends, which was nice albeit quick!  It's typically just a walk-by friend sighting at these things, because their kids are going that way and mine are going this way and so you just smile and say hi and then you're gone.  But I did get to visit with a few friends whose kids were at the same activities as mine, and that was very nice.

One friend had an interesting question for me.  She asked if I was getting bored?  Huh.  That's a great question.  The simple answer is that no, I'm not at all bored.  First of all, I'm very busy feeding myself, hydrating, exercising, resting, and healing.  Secondly, I guess I don't even know what secondly is.  I don't feel well most of the time, so I'm usually adjusting my activity to try to feel better, and I suppose that changing my activity largely prevents boredom.  If my head hurts, I lay down.  If my legs feel restless, I either exercise or find a standing-up activity, like cooking, unloading the dishwasher, organizing the spice cupboard, etc.  And if I AM feeling well at a given moment, then there are plenty of things to be done for the family, for my affairs, or for my job, depending on what I feel capable of achieving.  I definitely wouldn't say that I've gotten bored.  Am I weary of feeling unwell?  Absolutely!  But not bored.  Not yet.  If this continues on and on then I can envision a day that I get bored, but golly I hope that I'm currently on the recovery home stretch!  I feel as though I must be nearing a higher-functioning recovery point.  It's coming.  And I'm ready for it!

Top 4 items on my when-I-feel-better list:  let the girls invite a friend for a sleepover, do science, garden with the spouse, and eat broccoli.  (I am missing dietary insoluble fiber hardcore!  I'm not sure when I can add it back to my diet, but since Dr. Oncologist suggested that the steroids are one of the contributors to my prior gut issues, I'm waiting to get off the steroids before freely eating insoluble fiber.  I've cheated here and there [a few bites of beans, lettuce, or whole grain this or that] without suffering, but I remain cautious.)   

Quick! I need to patent my tapestry-filled healing palace!

SF, from high school:  I don't know if your mom reads the blog, but she sent me the most lovely bracelets today!  I wore them to my scan for good luck.  I'll try to get a note in the mail to her.  Thank you!

A (sis):  I wore the turtle bracelet for good luck, too.  

Oh man, I can't wait to tell you about my thrilling brain MRI results!  Remember how I told you, because I had been told by allll the doctors, not to expect any changes out of Lloyd yet?  Because not enough time has passed and so even though the radiation will have killed Lloyd, my body will not yet have reduced him in size?  WELL...they all were WRONG in my case!!  SO unbelievably wrong!  They clearly have not toured my tapestry-filled healing palace, nor have they met my hungry absorptive orchid, nor have they beheld my yellow paintbrushes, nor have they encountered the healing power of carnation nation!!!

MY body has reduced Lloyd by 75% ALREADY!!!!  75%!!!!  This is amazing for at least two reasons:  1) little to no reduction was expected so soon (as mentioned already), and 2) at the outset I was told to expect 50% reduction in the size of Lloyd.  So not only has my body reduced Lloyd's size in Olympic-record speed, but it has also done so at a greater-than-expected magnitude.  Huzzah huzzah huzzah!!  All of our hard work has paid off, guys!!!

You KNOW I have pictures!!!  Dr. Radiation Oncologist was so excited to show them to me!  My sisters were at the appointment with me, and although I was totally engrossed in the pictures, my sisters were watching Dr. Radiation Oncologist, and they said that he was like a proud papa:  scrolling through the images; finding the best images for me; then smiling, rocking back on his heels, and folding his arms when he paused for me to take a photo. 

Two frames of my brain that compare Pearl (left) to Lloyd (right).  Pearl and Lloyd are the white blobs in the center-left portion of my brain frames.  Note that Pearl has retreated from the midline of my brain, hence the complete disappearance of my headaches!  Lloyd can be seen to be pushing up on my brain midline, which was causing the headaches.  The image of Pearl is from today, and the image of Lloyd is from late December (my first Lloyd scan).  

75% reduction, guys!!!  Unbelievable!!  One of my sisters asked if my body will keep shrinking the tumor or if the best result has already been achieved, and Dr. Rad Onc assured us that yes, my body will continue to shrink the tumor down, so the next scan will reveal just how small I can make that Pearl.  How low can I go?  This is my new healing challenge, after I get through the steroid-step-down and brain swelling challenges.   

After the Lloyd result had been shared, I asked about the brain swelling, because you can kind of see the swelling around Lloyd here but you can't really see any swelling around Pearl.  But I can still feel it!  So he pulled up some different images that show the swelling better than the first images.  It's still rather hard to see, so I tried to draw circles around the swelling.

Two frames of my brain that compare the swelling around Pearl (left) to the swelling around Lloyd (right).  It's really hard to see the swelling around Pearl, so I circled it in blue (none of the colors showed up very well).  To keep things even I circled the swelling around Lloyd, too, but of course it didn't really need it because the Lloyd image is a bit high-contrast (I had no control over this).  The image of Pearl is from today, and the image of Lloyd is from late December (my first Lloyd scan).

When I saw how scant the swelling is around Pearl, I asked if it fluxuates or if I'm imagining things when I seem to experience a difference in brain swelling as my day progresses?  As in, as the amount of steroid decreases in my body between doses, does the brain swelling increase?  Because that's what I feel is happening.  He said that oh yes, that is certainly what's happening.  So the amount of brain swelling shown on the scan is the amount of morning brain swelling, which is a bit less than the amount of early evening brain swelling, right before I pop my 'roid.  Fascinating. 

I asked about evidence for necrosis, and he said that it's too early to tell that.  Huh.  I had thought that that was one of the purposes of today's scan.  So if it's too early to visualize necrosis, and it was supposedly too early to visualize shrinkage, what WAS the point of today's scan?  I must be confusing some aspect of what I thought I'd been told.  Well, regardless, today's scan and results ended up being QUITE exciting, didn't they, and I'll take it!    

And that was the end of the appointment.  He clearly was very pleased with this result, as was I.  He said he'll see me again in three months, when we'll do another brain MRI!  Huzzah!  

Then I proceeded to have a lovely midday with my sisters, who had both taken the day off from their jobs and motherhood to take me to these appointments (thank you!!).  They did my Leslie Sansone walk in my living room with me (which for them is like a warm-up to a real workout, lol), then we made gourmet nachos for lunch (tortilla chips, cheese, veggie taco meat, beans (for those that could--you know I snuck some since I didn't die the other day), salsa, avocado, greens).  A good time was had by all.  

I can't end this post without a quick shout out to the Medical Physicist who spent 12 hours planning my stereotactic radiosurgery (SRS) treatment plan to kill Lloyd.  He did an awesome job, methinks.  His treatment killed all of Lloyd so thoroughly that my body could get in there and rapidly start cleaning him up.  I am deeply grateful to both the Medical Physicist and Dr. Radiation Oncologist for their excellence.

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.  

        

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.     

Patience

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!    

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