Activities

Quite a bit has happened since my last post, but also nothing at all.  The full radiology report of my previous brain MRI scan was released the day after I blogged, and I have since visited with both Dr. Radiation Oncologist and Dr. Medical Oncologist.  The full radiology report said that my scan result was consistent with "disease progression".  This is because in addition to the swelling, Lloyd has a corner with increased blood flow.  But there is still uncertainty about what's going on in there because the increased blood flow is not associated with increased thickness or other signs of growth.  SO, we're consulting with experts as if Lloyd is still growing, but we're not rushing into any treatments or decisions.  I'm having another scan on May 24th, to see if it is more definitive or if Lloyd has changed in the 6 weeks between scans.  That would be informative.   

Next step:  get a referral to another medical facility, the Mayo Clinic up in Rochester, MN.  This is because Dr. Radiation Oncologist says he can't give me any further electron-mediated radiation to the site of Lloyd.  The risks to my healthy brain are too great.  But he said that his colleagues at Mayo Clinic have a photon radiation that might work for me.  Apparently we have more ways to control photons than electrons, so the photon radiation can be more finely tuned and will not cause as much collateral damage.  So, I'm somewhere in the process of pursuing that appointment in the next two weeks (hopefully I can get in before the next brain scan).  

Next step:  meet with Dr. Brain Surgeon again, see if he's got any news or ideas.  My sister found a news article about a doctor at the Mayo clinic in Florida who developed a new surgical tool/method to remove deep-seated brain tumors such as mine.  https://discoverysedge.mayo.edu/2018/07/11/improving-access-to-deep-seated-brain-tumors/  I'm not booking tickets to Florida or anything, but I do think it's worth discussing as Lloyd continues to be undead!  

Next step:  book an additional family vacation.  I've already made arrangements for us to go to the Black Hills (i.e. Mt. Rushmore, etc.) in August, but if Lloyd is undead this seems like too long to wait.  So my genius spouse said, how about we take two vacations?  YES.  YES.  That is a WAY better idea than the hassle of rebooking!!  My brother and his wife just bought a new house (they haven't even moved in yet, lol), so we might go to Seattle and bother them for a week.  We can help unpack!  Or cook your meals while you unpack!  Additional motivation for vacation #2 is my dear friend, G, who passed away last week from metastatic breast cancer.  I've gotta make the most of the days that I have!  We all do, really. 

ALSO, I've increased my steroid dose to 3 mgs per day and am much more comfortable on most days.  I guess I didn't even realize how uncomfortable I'd gotten!  But my head is feeling a touch better, so thank you, steroids.  

ALSO, we have some fun projects going on!  The spouse demolished the old wooden and somewhat rotten shed, and has ordered a new 10 x 20 shed!  It's basically a small house!  We don't have a garage, so we're super excited about this extra storage and work space.  It has two lofts in it, so the kids are hopeful for a play area.  My best friend growing up had a play area in the loft in her garage.  I always wanted to play up there!  But it was prohibitively hot most of the time.  

My project is that I'm painting the upstairs bathroom.  It's merely halfway done, but the girls enjoy helping me.  One more afternoon of good energy and it'll be done!  I picked a shade of blue that was recommended as inspiring "serenity".  I was a little worried it'd look like that country blue from the 90's, but that is not at all the case!  On the wall, it has a pleasant greenishness to it.  Huzzah!  

A few more pics from our joyous spring break trip to Santa Fe!  I failed to get them to post in order, but I think it won't trouble us too much. 

My stepdad is a professional oil painter (artist), and his art studio is attached to his home.  http://rogerwilliamsart.com/  He graciously shared his materials and expertise for a few hours of painting.  E was calling herself "Mona Lisa #2" as she posed for a portrait painted by A.  E was very patient and only got up for 2 breaks.   

Portrait is coming along nicely!

This is right outside their backyard, rural Santa Fe, NM.  Hiking to the arroyo (dry creek bed).

On our hike to the arroyo.

Also on our hike to the arroyo

Before we went to Santa Fe, we stopped at the Great Sand Dunes National Park.  The dunes are shown here as the gray material between the greenery on the bottom and the mountains in the background. 

My spouse turned into a little kid at the sand dunes!  He took off with his sand sled, heading for the tallest dune within reach, and we didn't see him for 20 minutes.  He came back to us looking like this.  Ha! 

The family, holding our rented sand sleds.  The park does not rent the sleds in the off season; you have to plan ahead and rent sleds from a nearby outfitter. It was such a beautiful day to visit this park, sunny and not too hot or cold.  

The beautiful snow made for wet sand, and wet sand is not good sledding sand.  Here is E struggling back up a dune.  She had a blast!  Said she felt like a fairy in a sandbox. <3

Swell

Well, in the car I was telling dad how I'm trying to get out of the habit of ascribing either a positive or negative value to these darn scans.  It's just data, and in this case it truly is neither good nor bad.  It's just more of the same, and I'm fine with that.  1) no new tumors!, 2) I'm comfortable and I'm not having debilitating side effects!, 3) my brain swelling is increased (in other words, worse, but I said I wasn't going to use a word like that), 4) Lloyd is still there, obviously.

So what do we do about the dang swelling?  Same as always...increase the dang steroid dose again.  Dr. SRS Expert suggested 2 mgs in the morning and 2 mgs in the evening.  I countered, could we just try 2 mgs in the morning, since I'm not having seizures, etc., and this is just a preventative thing...?  He said that that's fine.  SO, hbomb continues to over-achieve at swelling and under-achieve at getting off the steroids.

Although I'm not having terrible side effects, in hindsight I think I can tell that I have brain swelling.  When I stand up too quickly, my head starts to throb.  And my ear still feels pressure-y, it's never gotten better.  And I don't know if or how this relates, but my jaw has been sore lately.  A short list of things that are hardly worth complaining about, but perhaps are indicative of that which I cannot see. Otherwise and thankfully, my body isn't giving me much information about how much swelling is going on in there.  Quality of life = high.

Well, I was going to delight you with more spring break photos, but technology is failing.  So...next time!  Thank you for your support, dear ones!  Have a swell weekend!

Nearly jubilant

It was a good but tiring day today!  The spouse and I hit the road after he walked the girls to school, we listened to comedy downloaded from Spotify, and ate brunch in the distant town before the appointments started.

The MRI of my brain went off without a hitch.  At first it looked like the phlebotomist was going to have trouble finding a vein for injecting the contrast, but then he switched arms and had no troubles.  Usually I like a silent scan, but this time I opted for music in my headphones.  Adele set Fire to the Rain, and I don't remember what other songs played but the scan only lasted about 5-6 songs.

Then we trekked through the hospital to get the results from Dr. SRS Expert.  First his two new residents came in, and it was apparent that they were new.  The previous resident we'd interacted with was a senior resident, and these residents were...whew.  Brand new, perhaps.  Not on top of their game today, and indeed put us off of our game a little bit.  They came in making excuses about having gone into the wrong room first (something about going into a room with Dr. Allen instead of Mrs. Allen...I decided not to confuse them further by pointing out to them that I'm both) and in their blustering failed to introduce themselves.  Then they asked me a lot of questions about how I'm doing, and suggested that maybe my ear fullness is due to the common cold?  But I don't have a cold!  Then they pulled up the pictures and were excited to share the "good news" with me but didn't really explain the good news.  Fortunately Dr. SRS Expert wasn't long behind them, and he too was very optimistic about the results of the scan.  As with previous scans, the good news is in what ISN'T there--no new tumors.  I'm getting the feeling that this is an atypical result!  He was nearly jubilant about this.  I must be sure not to take this for granted, even though it is clearly my expectation that I will not sprout more tumors (we've done radiation twice, I'm taking neratinib, and I have no cancer elsewhere).  And really, if Dr. SRS Expert is pleased with the results, then that's all there is, there isn't anymore.  It sucks to leave the exam room on a note of ambiguity, which is what we did last time.  The next scan is not until April.

The additional good news is that Lloyd is not bigger, and is in fact smaller in important ways.  The part of Lloyd that was growing looked kinda like a tail, and that tail is much reduced.  It's more of a nubbin now, not tail like at all.  So...whole brain radiation did its job!  Huzzah!  (We don't yet have the blood flow (perfusion) results, but unlike previously, Dr. SRS Expert didn't hold back his interpretations.  I'm not sure why.)

Neutral news that is not surprising is that my brain swelling is unchanged.  I updated him on my steroid status and said that my head is feeling halfway decent lately, and he said something about the steroid dose being pretty good for now then.  I just reduced the dose a few days ago, so I'll hold here for a week or so then try to cut another half a milligram.  Maybe I won't be able to get off of them completely, but I'll keep trying.  I'll just listen to my head.

We briefly discussed the fatigue, and he said that it could continue for up to 6 months, but then he pointed out that I'm young so maybe not quite so long.  I countered that I'm almost 40!  But I was joking; I know that I'm young, and I also know from previous cancer treatments that yes the fatigue will linger, possibly for up to a year, but it will get easier here pretty soon.  Eventually it'll shift away from all-day fatigue and into a type of fatigue that allows for more functions but makes my days shorter and my nights longer.  That'll be easier for this wife/mom/daughter/sister/friend/scientist to work with.  Right now I'm still pretty darn tired all darn day!  And even if I start out with some energy, I'm easily depleted after a little exercise or family time.  But I'll take it!  I'm living with cancer, not dying from it.  I feel like I'm doing pretty awesome, in the scheme of things, in my slow and nappy way.  Thank you all for being patient with me!

Puerto Rican rainbow, somewhere in this picture (sadly it's not showing up on my computer screen, but I can see it on my phone screen).  My friends S&B are in Puerto Rico now, and my Dad and bonus mom are headed to the Dominican Republic tomorrow.  Enjoy the beach, lovies!!! 

Superhealer with only minor glitches

Happy New Year everyone!!  I hope that you all have had a healthy and joyous December celebrating that which you celebrate.  We celebrated health, and life, and family, and nourishment, and nature, and recreation.  And probably other things, but these are the themes I picked up on. 

I had a couple of doctor's appointments in mid-December, and at one of them I passed my brain test with flying colors!  Dr. Radiation Oncologist tested my brain with various physical tests:  I had to follow his finger with my eyes, turn my head as instructed, kick my legs as instructed, and stand with my eyes closed and my arms out in front of me without falling over.  And I could do all of these things!  So, no brain damage from radiation has manifested yet!  Huzzah!!!!

The glitches I've experienced are likely from other damaged parts, namely my ears.  My ears have a very loud ringing in them, and the left one in particular feels very full; more full than it did before whole-brain radiation.  The result is that I am very susceptible to motion sickness and mild dizzy spells if I move too fast or too much.  The good news is that if I sit down for awhile or take a nap, I feel much better.  I consider this to be a pretty minor glitch in the scheme of things; I feel extremely grateful that after everything my brain has been through, it still seems to be functioning "normally".  The doc told me to keep doing what I'm doing!  So...we're on the right track with the healing thing!

My watery eyes seem to have resolved.  My tastebuds are still not normal.  My hair is not growing back yet.  I don't have much energy yet, but I have resumed some gentle aerobic exercise in hopes that that will help.  It seems to me that too much of being sedentary feeds more sedentariness, but I'm still taking it easy.  The body's messages are pretty clear right now. 

My potassium is low for some reason.  I was told to eat bananas and potatoes to get it back up, and Dr. Google also suggested beets and spinach and beans and tomatoes.  These are all things I already eat quite a bit of!  Low potassium is giving me foot and hand cramps (my left index finger completely seized up the other night when I was trying to floss!) and tingling in my hands, so I'm trying to eat MORE of these things.  Should be easier to do now that the holiday food fest is over. 

One night at dinner my nose started bleeding.  The kids were moderately alarmed, but it wasn't a bad nosebleed.  The radiation damaged my sinuses.  I was told to put some Aquaphor on a q-tip and gently put some up there.  That seemed to resolve it pretty quickly.  I didn't really have any further nosebleeds.

I'm messing with the steroids!  I'm down to 1.5 mgs in the morning AND evening!  This is an achievement!  I just achieved this yesterday, so hopefully it goes okay--I tried this before Christmas and had two super crummy days and so bumped the dose back up.  So far, crumminess is less.  I have an MRI on Thursday, so we'll see what that shows.  I'm hopeful for a dead Lloyd and reduced swelling!!! 

Happy holidays!!

Fuzzy caterpillar camp-out

Folks (mom) are frequently asking if I'm feeling better.  Better than what?  In the old days, before cancer, if I felt better I took that to mean that I was done feeling unwell. Now, it might simply mean that I feel a little bit less crummy now that I've had a nap, or sure maybe I feel better than yesterday, or thanks for the hug it lifted my spirits and I do feel a little bit better now that you mention it, but no I am certainly not yet feeling like my old self.  Perhaps I never will, and that would be okay, because I'm so grateful to be here and things could be so much worse.  I am happy to be somewhere on the healing continuum, and I am summoning all of the patience I have to keep progressing along toward "better".  May I arrive at "best" in due course! 

So, instead of trying to analyze if I'm feeling better or not, I've decided to share that perhaps I've stopped feeling worse.  Although I don't know what tomorrow will bring (does anyone?), it seems that I've had a couple of steady days at this level, with nothing dramatically more uncomfortable.  Weak, tired, nauseous, head-burny, head-pressury, scalp itchy, ears ringing, meh.  And maybe a little bit less grumpy?  Little bit less?  I saw Dr. Oncologist yesterday and she affirmed that I'm doing the right things.  I complained to her about how hard it is to "listen to my body" because I get some mixed messages--my quads want to be used, but my head wants me to stop moving.  She told me to cut myself some slack, and that walking and yoga are perfect for now.  I'll get back up to more strengthening exercises in due course.  I haven't gone in to work in over a week now (work is the most exhausting thing I try to do), and both docs nodded in support of that for now.  I'm only a week out from radiation--the non-Lloyd parts of my brain have lots of healing to do and that takes time and rest!  

When I saw Dr. Radiation Oncologist last week, I mildly complained to him about running out of ways to explain to curious people how my head feels.  He suggested that I have fun with it and create a fanciful story.  So here's what came to mind.  A family of wooly bear caterpillars is camping out in the basal ganglia region of my brain, roasting marshmallows over Lloyd's burning carcass.  The smoke and heat from the fire fills my brain.  Sometimes the fuzziness of the wooly bear family tickles a nerve and makes my forehead or pinkies tingle.  

Dr. Oncologist recently attended the annual breast cancer conference in San Antonio (she goes every year), and she reported to me that we are absolutely on the right treatment path and that my situation is an area of active research because of the high number of patients who are in the same situation that I'm in (I didn't think to ask, but I presume she meant Her2 brain metastases).  She's hopeful for new treatment options in the near future.  Huzzah for being on the right path, and huzzah for new treatments!  

In the meantime, my job is to keep healing.  Next brain MRI is Jan 3; we'll see what's going on inside my head and decide what comes next after that.  The chemo options discussed previously (irinotecan, etc.) will be discussed again after we get further out from radiation.  It's too soon for the chemo options.  My brain needs time to heal!  

I still haven't shaved my head, but TONS of hair has fallen out.  I seem to have bald patches, so it's hard to decide what to do with the remaining hair.  Plus it's not done falling out yet.  BUT I've been slow to decide to shave it because I don't want to if it's not all going to fall out.  At this point I think it's becoming clear that it's all falling out.  Not that there's much left to cut, lol.  Pretty wispy!!  It's mostly just a mess to have long-ish hair falling out, rather than buzzed hair falling out.  I don't know what to do.  One day at a time!  I've been bald twice before; this is no big deal for my vanity.  However, hair is good insulation this time of year.  

The family is doing great.  The spouse and kids chose a beautiful Christmas tree.  It smells so nice!  

A few more from Puerto Rico!  

E sampling from the chocolate fountain at a Gelato shop (Chocolato)

Az reaching out for a cannonball at Castillo San Cristobal.

Spouse and A discussing something important (or possibly discussing our failure to have any quarters with which to turn on the telescope) in one of the WWII era turrets at Castillo San Cristobal. 

E with her cool shades walking through a hallway at Castillo San Cristobal.  

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!           

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.)   

Validation, and neither the Lion nor the Unicorn are the problem

The spouse and daughters are out having fun, so this is just a quick post to follow-up from yesterday's post and today's visit with Dr. Oncologist. 

"Overly poorly"--those are Dr. Oncologist's words to describe how people typically feel when they step down their dexamethasone steroid from a high-dose to a low (or ultimately zero) dose, which is what I'm doing.  Check that box.  I think that "overly poorly" is the honest way to describe how I feel.  I was overly generous with that Lion and the Unicorn crap.  ;)  SO:  my feeling exceedingly fatigued and crummy is the fault of the steroid dose-decrease process.

Things I learned today:

1)  Stepping down one's steroid dose actually increases fatigue.  Check that box.  She says it's in part because my adrenal glands have completely quit making my body's natural steroids, and it's taking my body a lot of energy to get my adrenal glands turned back on again.  This process takes a looooong time apparently.  I was relieved to hear that what I'm going through is normal and expected, in particular because MY expectation was to be feeling considerably less fatigue by now.  Instead, I'm feeling more fatigue each day!  It seems so backwards, doesn't it?  But it's all part of the healing process, and I'm doing it.   

2)  Stepping down one's steroid dose also causes nausea.  Check that box.  It's not nearly as bad as chemo-induced nausea, and I can eat through it, but yea it's crummy.  As if eating wasn't already a pain in the ass.  I am SO over protein powder.  I hereby declare that I'm taking a break from it. I deserve at least that much. 

3)  Stepping down one's steroid dose increases brain pressure.  We already knew this one, but I mention it because the time of day I chose to retain my steroid dose (evening) has set me up for extra discomfort.  I told her I was taking my one steroid pill in the evening.  She snapped her head away from the computer to look me in the eye and said that most people are more comfortable when they keep their dose to the morning, not evening, because then they have the benefit of feeling the steroid all day.  I'm pretty sure that I swore, and then said that I would have greatly loved that, but previously I thought I understood that she wanted me taking my steroid as far away from the neratanib as possible, and she had told me to take the neratanib in the mornings.  So when I did my steroid step-down, I presumed that she wanted me to keep my dose in the evening.  She said that I'm welcome to try and move my steroid to mornings, but I would have to do so by shifting my pill by a one-hour increment every day; I can't just skip my evening steroid and instead take it the next morning.  This incremental 'roid movement would shift my food intake (because I have to take the 'roid with food) and be a real pain in the butt.  SO, I told her I'm a tough cookie and I'll just keep my steroid in the evening.  But yea, the timing of my damn dose means that I feel steadily worse as the day progresses, then I have a few bites of dinner and wolf down my steroid before the meal is even over so that I can start feeling better.  I don't really feel it kick in like one does when one takes Nyquil or something.  But I trust that it's helping, and I do indeed feel oh so much better in the morning.  Mornings are my time to shine!   

4)  I told her that I wait until I have two days with no-ish brain pressure and that's how I decide to step down my steroid dose, and she said that that sounds good!  So I'm doing things correctly.  She asked about the brain pressure and I said that I have some, but it's not the worst that it's been and it's not zero.  She was fine with that.  So I think I've got a good, medically endorsed balance between brain pressure and steroid dose.  For the next 'roid step-down I'll have to start cutting my pills in half, then after that I'll take a half a pill every other day, then I'll be to zero.  No indication or inkling of how long that's going to take.  One day at a time, patience with my body, the present moment is mine. 

5)  Finally, steroids specifically deteriorate ones quadrecep femoris (thigh) muscles more than other muscles, so my current struggle with stairs and standing up is also completely normal.  I am doing a great job with my exercises, and I asked for other strength-building suggestions.  She suggested adding reps of simply standing up from sitting, maybe starting with a pile of big books on a chair or something a little higher than an actual chair (because it sounds ridiculous, guys, but I can't stand up from a chair without using my hands).  She directed me to hold my hands in namaste (aka prayer) or something like that for balance, and also to have something in front of the chair for support when I need it.  So, in addition to my walking workout, my leg lifts, and my yoga, tomorrow I will make/find time for doing standing exercises despite my increased fatigue.  This really is the healing Olympics! Holy cow!

This is hard, yo.  I've totally got this, but whew this is hard.  I feel like I'm my own puzzle, and every day I have to put it together under new conditions! 

My tapestry-filled healing palace now harbors a Lion and a Unicorn

The past couple of days have brought some conflict into my tapestry-filled healing palace.  This is for several GOOD reasons, I think.  The conflicts have conjured the Mother Goose nursery rhyme The Lion and the Unicorn into my head:

The Lion and the Unicorn were fighting for the crown. The Lion beat the Unicorn all around the town.  Some gave them white bread, some gave them brown.  Some gave them plum cake and drummed them out of town. 

The conflict is between my body (let's say my body is the Lion) and my brain (the Unicorn, clearly).  My body has been craving more movement, which is AWESOME, but my brain wants to sit with eyes closed.  I am doing my best to find the right balance, and give both the Lion and the Unicorn what they need in the present moment, but "balance" feels a bit like "versus" these past few days and sometimes it's just dang hard.  Drumming them both out of town sounds mighty good to me right now!  Fortunately I also need to make time for digesting and hydrating (that's what I'm doing right now), so I get to work on a little blogging here and there (I have a non-cancer post that I've been working on for a few days that's almost finished!  Fun creative activity for the hbomb!).  And I'm really good at typing so I can actually type this with my eyes closed half the time.  I just typed that whole sentence, and now this one, with my eyes closed.  Huzzah!   

From whence did this conflict arise?  I have hypotheses:

1)  On Tuesday I dropped down to 1 steroid pill per day, because I had a couple of days with what seemed to me to be near-zero brain pressure.  So, I just take one 'roid at dinner now.  This has yielded a noteworthy increase in head pressure, for which the best relief is sitting or lying down with my eyes closed.  An ice pack on my face feels good, too.  I see Dr. Oncologist tomorrow--maybe I am being too aggressive with the steroid step-down and need to add a half a pill at breakfast?  I'll ask.  It's likely that this is just the process and I'm dealing with it appropriately. 

2)  On three of this week's four days, I have had two walks per day, huzzah!  I still did my 1-mile Leslie Sansone living room walk each day, and at a different point in the day I added a short walk in the neighborhood with a buddy.  Trekking beyond my tapestry-filled healing palace out into the healing garden of the real world is lovely for my mind and my body, but this additional exercise is likely a factor in my Lion and Unicorn conflict, right?  How can it not be?  One other physical achievement is that when doing my daily yoga routine, I now hold the down dog position for one full minute.  Huzzah!  I still can't go up stairs without the help of my arms and a railing, though.  But I'm stronger each day. 

So, I spend my entire day trying to resolve this conflict.  Move, rest, move, rest, move, rest.  Yesterday my brother called me at about noon, right after I had completed my Leslie walk but before I had completed the cool-down and stretch.  He was like, are you busy?  And I was like yes, yes I am.  I had to laugh at myself.  I just put him on speakerphone and kept doing my stuff.  Sitting time was over, I couldn't just sit and talk on the phone!  It was time to stretch and make lunch!

Let's see, I had at least two more things to say.  What were they?  Oh yes, one item is that my mom, H, has pointed out that Lloyd needs to be renamed.  Lloyd doesn't exist anymore.  We irradiated him, and my body has been working very hard to extricate his carcass without damaging my basal ganglia or other adjacent brain tissue and without causing any seizures or trouble swallowing or seeing.  Thank you, body, for doing such a good job so far!  I appreciate you!!!  Mom has suggested the name Pearl, and I think that that's a good name for it.  In oysters, pearl formation starts from an irritant getting into the oyster; Lloyd was definitely an irritant in my brain oyster!  The oyster then coats the irritant with a pearl sac and nacre, slowly turning it into a pearl.

Next Friday, Feb. 23, is the first day we get to evaluate Lloyd's transition to Pearl.  I have both a brain MRI and an appointment with Dr. Radiation Oncologist.  So stay tuned for those results!  I'm super curious to see how things are going in there.

Yesterday was Valentine's Day, and I had previously blogged about a recovery goal to have a date with the spouse.  Goal achieved!  We had to make some changes to our plans, because our original reservation was at a restaurant with a fixed-price 5-course chef's tasting menu with wine pairings, but with my current dietary restrictions and lack of alcohol consumption this didn't make sense anymore.  So I moved our reservation to our favorite and fancy Thai restaurant downtown where I ate yellow curry with tofu and potatoes and rice, and an enormous fancy chocolate lava cake.  The spouse's dinner was delicious, too.  Clearly I was smitten by this cake, I'm swooning quite dorkily in this video. Our daughters would have LOVED to experience this cake; I felt a little bit guilty eating it without them.  Our server said that they only serve this dessert on Valentine's day, though.  Next year maybe we'll take the girls out for a Valentine's dessert.  That would be fun.  Huzzah for going out, huzzah for eating out, huzzah for the spouse, huzzah for the MIL for childcare!  I love you, babe!  I love you, MIL!  

 

Oh, and the chocolate mayonnaise cake that we made for the spouse's birthday was delicious too!  I highly recommend that recipe! 

Naptime!  

Spending my oil on my kids

The balance among healing, strengthening, digesting, tasking, and creative fulfillment is delicate, to be sure.  Listening to one's body is of high importance, and is both hard and not hard.  It's hard when you're doing a whole bunch of other things, but right now it's pretty much my only job.  So, I just have to shut up and listen.  

Yesterday I think I did just a tiny bit too much.  Just a tiny bit.  I don't know what I did that was too much (probably thinking--yesterday I dealt with some Girl Scout and family tasks on the computer, no big deal, just normal stuff for a normal adult), but I have felt wiped out today.  So this morning I shirked all tasks and instead meditated for 1.5 hrs, which was a brilliant choice for digestion and brain healing.  Then I exercised and got on my feet for a bit.  

I'm trying to come up with easy, non-exhausting ways to keep my oil on my spoon specifically for my glorious children, and I wanted to share a little bit of that with you because it's precious.  

Oil for my kids.1:  My friend C had given us a jar of cookie dough mix for Christmas (thank you SO much!!), so the other night the girls and I baked cookies.  We adore baking together, always have, but having a homemade mix all ready to go made it a much more do-able evening activity for me at this time.  (We're a made-from-scratch family)  Plus, it made a smaller batch of cookies than a full cookbook recipe, so I didn't have to stand at the oven forever!  I think it was only three trays of cookies--perfect.  Just LOOK at these faces!

"We love baking with you, mom!!"  Plus, major hugs were administered throughout the baking process.

Oil for my kids.2:  This is so silly, but I'm compelled to share anyway because my brother said he might use it with his wife to get her to like leftover night so maybe it can help someone else out there, too, lol.  Last night for dinner the plan was for me to warm up leftovers while the spouse and kid picked up her girl scout cookies.  I decided to have some fun with it!  Before I laid down for my nap, I set the table, arranged it with candles (as-yet-unlit), and I wrote out a whole bunch of food choices on the whiteboard under the heading, "Are you ready for mom's candlelight leftover night?".  When everyone got home, they made checkmarks for their desired food choices, I lit the candles (because the candles were the best part so they had to be lit before the food prep), I executed the microwave and the slicing, and dinner was served!  (I did not eat from this list; I had my last piece of MIL mushroom quiche, gingered carrots, and strawberries.)  E was dancing in the kitchen, she was so excited about the checkmarks and seeing the choices.  "Mom, can we do this EVERY night?!?!?"  

"DC pasta" is simply a creamy pesto pasta (homemade bechamel sauce with cheese and a dollop of pesto--no recipe to impart, sorry) that the spouse made a few days ago.  We call it DC pasta because E discovered that she loved creamy pesto when we traveled to Washington, DC, to attend my award ceremony a few years ago.  Prior to that, she wouldn't touch pesto because of the green things in it.  But in DC my parents took us out for a fancy, celebratory Italian dinner, and the kids had to try new things.  That was such a wonderful meal, such a magical trip!  

Oil for my kids.3:  Today while I made my lunch, I made muffins for breakfast tomorrow.  I haven't made muffins in AGES; they love muffins and will be so excited by this development.  I found a simple new recipe for blueberry oatmeal muffins, and I highly recommend it.  (You know I had to eat one warm muffin, so I can confirm that they're delicious!)  They're not too sweet, not too dense, and they have lots of oats in them!  Should be a great way to start their day tomorrow, especially since it's Iowa Assessments (standardize testing) week at their school (I keep calling it the Iowa Test for Basic Skills because that's what it used to be called when I was a kid, and the kids keep correcting me, but I can't seem to remember what the corrected version is).  My kids LOVE testing week for some reason!  It's E's first year being old enough for it, and she's loving it.  They come home super amped and chatty about it.  Good for them!  I adore my children.        

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.