Independence

I'm here to tell you that going from SOME steroids to NO steroids sucks.  It sucks a lot.  This has been the worst of the steroid step-down yet!  This week, I have had fevers (up to 101 F; oddly enough, they mostly start in the evening and are gone by morning; I'm probably the only one who has been sleeping under two blankets in this hot weather), fatigue, swollen joints (particularly knees, hands, and feet), and nausea.  Oh, and allergic reactions!  The steroids have been keeping all of my allergies at bay, including my normal allergies to pollen, but now that the steroids are gone my immune system is waking up to all sorts of insults.  In fact, my body has decided to be allergic to sunscreen, so I have itchy red bumps on my arms.  Needless to say I will soon be the proud owner of a long-sleeved swimsuit. 

Today I felt quite a bit better, finally (my last steroid was Monday morning; I felt mostly fine on Tuesday; the crummies started in earnest on Wednesday).  I even accompanied the kids to the pool today.  Nay, I DROVE them to the pool.  Because I can drive now!!  Although the process of getting off the steroids sucks, being off the steroids doesn't suck.  Huzzah for driving! 

When my youngest, E, found out that I was no longer taking steroids, she ran through the house shouting, "Mom can drive!  And eat pie!"  I presume the latter part of this is because when I first started taking the steroids, people were bringing us pies, but then Dr. Oncologist told me to eat less sugar because steroids interfere with the body's ability to process sugar.  So I quit eating pie.  And E thought that that was a big bummer for me.  She has a big heart. 

You might be thinking, was it weird to drive after 6 months of not driving?  Because I thought it was going to be weird.  But it wasn't at all!  I kinda spooked myself a bit--I checked the mirrors approximately a bazillion times before backing out of the driveway, I was super cautious at stop signs, etc.  I didn't want to screw up and lose driving privileges!  But beyond that, it didn't feel unnatural to be behind the wheel.  The weirdest part is going to be getting back into the habit of driving.  That is, we are all used to me not driving, so Ian continues to nominate himself for family errands.  But I could do that! 

It was at my appointment with Dr. Oncologist on Friday that she told me I could drive.  Also at that appointment I learned that I can quit taking the prophylactic antibiotic (it was preventing a particular lung infection--mission accomplished) and doing the 4-times daily anti-fungal mouthwash (this was preventing a thrush infection--mission accomplished).  HUZZAH for no more antibiotics and gross mouthwash!!!  I swear that when she prescribed the antibiotic, she told me I'd have to take it for 6 months.  Needless to say, I didn't argue with this turn of events!  She did say that I'm to keep taking the valacyclovir, which is to prevent shingles.  But there's really no side effects to taking that, so it's okay. 

Also at Friday's appointment, I got scheduled for a bone scan.  Bummer!  This is because I have a sore spot on my chest wall.  There's no bump or redness, just a bit of soreness.  It started about a week ago, and I figured it was related to coming off the steroids (its adjacent to an area of increased fat deposition).  This chest-wall pain has happened once before, and after doing the scans and seeing that there was nothing wrong with me, I was told that it was probably just my screwed up nerves (from the mastectomies and radiation) and I should rub the area to desensitize the nerves.  That worked.  The screwed up nerves aren't doing me any favors now, either, because I can't tell exactly from whence the pain is originating.  I think it's superficial, that is, originating in the skin and not the ribs, but I can't be sure.  Dr. O therefore ordered the bone scan to rule out an explanation for pain in the ribs.  This bone scan will be on Tuesday and will take 3 hours (inject me with some crud, then scan me 3 hours later).   I'll get the results at the end of the day on Friday. 

Happy Independence Day, everyone!  I will be celebrating my independence from steroids! 

Floating

I am digging this scheduled steroid step-down!  Takes the stress and worry right out of it for me.  Unlike February and March when I was previously stepping down my steroid dose, I don't analyze every little brain pain, wondering if I'm stepping down too quickly.  I'm just rolling with it.  Floating, in fact.  It's been incredibly liberating.

My massage therapist gave me the word "floating", as opposed to striving.  I had definitely been striving for lots of things this spring (striving to get stronger, striving to work, striving to participate in family life, striving to heal, etc.), and striving can lead to fatigue, stress, and frustration.  Floating, on the other hand, is so much more restful and stress-free.  So this next phase of my healing palace is focused on floating.  I suppose it's appropriate that it's summer and the awesome city pool is open, so that I can float literally in addition to figuratively.   

I typically feel moderately lousy for ~4 days after lowering my steroid dose, then I start to feel incrementally better again.  The lousiness comes in the form of fatigue and nausea, but it's not half as bad as it was in Feb./March when I was doing the step-down from the higher doses.  Currently, the side effects that are driving me crazy are the chubbiness and the water retention.  These are even worse than the facial hair that I've developed, lol (E said to me, "mom, when will your mustache go away?").  I'm sick of my gut being in my way when I bend over!  My shoulder/neck area is oddly chubby and uncomfortable.  My knees and feet are stiff, and my skin is taught.  In short, my body just doesn't feel right.  But I'm persevering!  I'm still exercising almost every day (probably 5/7 days each week...sometimes I'm sluggish but I get it done!), my diet is nearly normal (I still can't eat ice cream!  Messes up my guts!  Froyo for me!), I'm napping less, and my brain doesn't hurt very much or very often.  Huzzah!

MONDAY is scheduled to be my LAST steroid dose.  I'll take it with breakfast, then I'll be done!  I anticipate feeling a touch crummy next week, but I have no reason to expect that it'll be any worse than last week.  Then I'll float along until my own adrenal glands start up again, which Dr. Oncologist says could take up to 9 months.  Woa!  9 months!  That's a long time!  But that's okay.  I look forward to being alive in 9 months with some functioning adrenal glands.

Dr. O had previously said that I could drive again when I get off of the steroids.  I was thinking I could drive myself to work as soon as Tuesday?  But the spouse suggested that I wait until I see Dr. O next Friday just to make sure that I have her endorsement to get behind the wheel.  That's probably a good idea, but darn it's hard to keep waiting.  I feel perfectly capable of driving!  I've been biking around town, navigating traffic just fine. 

I'm going to invoke the Bliss List once again to share some exciting things  .I'm just going to restart at number 1, because I have no idea where I left off a few months ago.

1.  My friend R is coming to visit, from Boston, over the July 4th holiday!  Huzzah!!
2.  My friend D is taking me to see Hamilton in early July!  Huzzah!!
3.  My daughters have loved summer camp so far.  Huzzah!  They have attended three different day camps.  Tomorrow we'll attend the play that they've been working on for two weeks in one of the camps: a production of Hansel and Gretel.  In addition, A took a LEGO robotics class, and E took a ceramics class.  Next week they are going to a sleep-away girl scout camp called Sister and Me.  Isn't that adorable?  They are super pumped!
4.  Some folks in my lab have written some amazing scientific articles, and although they were all delayed by Lloyd, they all seem to be ready to submit for publication this summer.  By my tally, we'll be submitting 5 manuscripts this summer.  Huzzah!  I suppose that this item would be better presented on a Bliss List AFTER they are published, but that could be months from now.  I'm feeling pretty pumped up about it NOW because I did a lot of editing this week and saw how complete everything is. Thus, I'm going to float with the current bliss.
5.  My niece, baby A.  How can you not bliss out when you look at that face?  She and I have matching squishy cheeks right now--twins!  Thanks for bringing her up for a visit last weekend, H!  You guys are the best.

Baby A, in the arms of her mom and my sister.

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!           

Field trips!

How did the whole month slip away without a blog post?  Living and recovering, that's how.  Still feeling a swollen brain pretty much every day, despite the daily 4 mgs of steroids.  It typically manifests as a mild pressure behind my left eye and on my left ear.  I think it's affecting my hearing a tiny bit, but I only notice it when I wear headphones, so I'll report that to the docs tomorrow.   

Thinking is what makes me feel the worst, so I'm still working only half days and I still need some "eyes closed" time for a bit every afternoon.  I don't always sleep, but I do turn off most sensory inputs, the exception being that sometimes music or a podcast is nice, if I'm not sleepy, and usually listening to something makes me sleepy.  Often the lack of sleepiness is false and is simply my mind refusing to settle down.  Attending a weekly yoga class has been extremely helpful for both my mind and body.  Last week's meditation was on having no agenda.  No lists, no tasks, nothing that needs to be done.  Just surrender, let go, and have no agenda.  I've tried to carry that with me all week, and I've repeated the meditation on my own.  It's really nice.

I've had two weekends in a row with no agenda, huzzah!  Last weekend the girls and I skipped town and went to my parent's house, which is more like a retreat center:  woods, chickens, treehouse, massage chair, Nintendo Switch, comfy beds, games, and delicious food.  Huzzah!  The weather was glorious, and we brought our books and bikes.  A good time was had by all. 

A reading to E during a biking break. 

Playing games with Aunt Jacque!  We're the luckiest!  

This weekend was Memorial Day weekend, and we had no plans!  It was record-breaking heat in these parts, so we cooled off at the city pool, at my sister's lake house, and at the movie theater.  Again, a good time was had by all.   

Headed to Aunt Hilary's house! 

Mid-May, I organized a field trip for my daughter's girl scout troop to the Radiation Oncology Department.  The doctors, nurses, and specialists were wonderful to take an hour out of their free time to share their job with us one evening, and they truly did an amazing job!  They showed us images of tumors and told us how radiation is used to treat them.  They showed us the simulation room where they set up the patient with a pretend radiation machine to practice how it's all going to work.  They told us that some patients get little tattoos (I showed them mine from when I had full chest wall radiation to treat my inflammatory breast cancer), which are then used to line up the patient perfectly each time using lasers. They showed us the masks that some patients need to wear, instead of tattoos, to line up perfectly each time.  I had brought my mask, too, so we passed that around.  Then they took us in to the actual treatment room where the radiation is delivered--I didn't think we'd get to go in there!  The girls got to see the lasers that are used to line up the patients, and they got to peer into the machine that delivers the radiation.  The physicist told us that the walls of the room are made of concrete 6 feet thick so that the radiation doesn't hit the doctors and nurses while the patients are being treated.  He showed us how he uses a tank of water to calibrate the radiation machine every day; he uses water because the human body is mostly made up of water, so a tank of water simulates the human body.  One Girl Scout asked how much energy is in the radiation?  The doctor gave this analogy:  The electricity used to turn on the lights is roughly 100 volts.  The energy in UV light from the sun that gives you a sunburn is roughly 500 volts.  The energy in radiation used to treat someone's cancer is 16 million volts.  Holy cow!  That's a lot of energy!  Then of course the Girl Scouts wanted to know if radiation hurts.  The response from the professionals was that no, it doesn't hurt.  I suppose it's good that they didn't get into the side effects, like skin burns and fatigue and so forth. 

In the simulation room, with presentations by the Radiation Oncology Supervisor (purple shirt) and Dosimetrist (black and white shirt and sweater).

In the treatment room, with the physicist pointing into the radiation delivery machine, which can rotate around to pretty much any angle. 

Finally, we went into a conference room to have pizza and interview the doctor about his career path.  Dr. Radiation Oncologist was a nuclear physicist for 15 years before going to medical school.  He changed careers because funding for nuclear physicists was depleting at that time.  He said that to be a doctor you have to be motivated and to care for people. 

pizza with the Doc

The Doc was the only one who stayed and joined us for pizza, but I asked each professional to share their educational path with us before our time with them was through.  Dr. Medical Physicist has a PhD in physics and made jokes about how long he was in school.  Ms. Rad Onc Supervisor has a Bachelor's degree in nursing and a Master's degree in business administration.  Ms. Dosimetrist has a Bachelor's degree and after that went to a special 1-year program in dosimetry, which is kinda like a Master's degree in dosimetry.  So many wonderful career options!     

And I have one more big field trip this month:  tomorrow I'm headed to the University hospital down the road for a brain MRI and a visit with the neurosurgeon and a radiation oncologist (I won't be seeing the same one as last time--I'll be seeing a different one who is an expert in sterotactic radiosurgery and who was out of the office when I was there 7 weeks ago).  Spouse and dad are driving/joining me, and this time we're packing a lunch because last time we didn't have time for a delicious meal in our favorite town to eat.  Dad usually surprises us with a baked good, but it's been so hot this weekend that I wouldn't begrudge him if he decided not to turn on his oven.  We shall see!  Meanwhile, I am trying so hard not to be nervous, but I am quite nervous.  Either everything is going to be perfectly fine, and Lloyd will have resumed his transition into Pearl thanks to the daily 4 mgs of steroids, or everything will not be fine and Lloyd will again provide evidence that he's been growing.  I'm sure it's not going to be perfectly black and white like this, but the binary outcome seems more possible now than with some of the other crud I've been through.  I supposed "unchanged; come back in 6 weeks" is another possibility that I would welcome. 

Instead of terror, I've been trying to surrender to my body's healing processes, and to not have any agenda associated with tomorrow's scan.  Deep breaths, with no agenda.  It will be what it will be, and I'll proceed with my glorious life regardless.  Because I have strength, I am strength.  I have peace, I am peace.  I have hope, I am hope.  And I have the ability to rest.  Right after I take a shower.  Namaste. 

PET scan all clear!

Hope I didn't keep you waiting too long!  I haven't felt like sitting in front of a screen, what with this glorious springtime weather going on.  

The PET scan was all clear!  "No evidence of suspicious regions of increased metabolic activity to suggest malignancy or metastasis."  Yay!  Also noted is that they can't resolve the brain at all because it lights up too brightly, so we await the brain MRI on May 29th for further updates on the Lloyd to Pearl conversion.  

At my appointment on Friday I told Dr. Oncologist about the persistent headaches (pain level 2-3 on the 10-point scale, so not terrible but annoying). I asked if they meant I should increase my steroid dose, or if I could take Tylenol for them or something?  She didn't want me increasing the steroids, she did say I could try Tylenol, and she also suggested massage.  Oooo la la!  Guess I need to be making a massage appointment.  I won't argue with that suggestion!  

SO, my dad went to the store and picked up some extra-strength Tylenol, and I've been taking it all weekend.  I'm happy to report that I am indeed feeling much better!  Takes the pain down to a 1, which is merely a sensation.  I still have the feeling of pressure, but that's not surprising.  The best thing about the Tylenol is that it improves the quality of my resting and sleeping.  By reducing the pain I'm finding that I'm less preoccupied with or worried about Lloyd, so I can fall asleep more readily.  Very nice indeed! 

Despite the headaches being largely under control this weekend, my brain still strongly urged for naps.  But I was able to balance the rest time (including a nap in the hammock, for the win!) with all sorts of fun things--farmer's market with the family, bike shopping for an appropriately sized bike for my oldest (didn't find one yet, but one bike shop is expecting a shipment of 24" bikes on Tuesday so we're going back there later in the week), summer clothes shopping for everyone, grilling, backyard fire-pit fire and s'mores, badminton (of course), bike ride practice with my youngest, board games with ourselves and with friends, laundry, yoga, and I watched a movie.  I rented "I, Tonya" on Amazon.  It was a really well-done movie, but such a sad story!  Poor Tonya Harding.     

I hope that you enjoyed life this weekend as much as I did, if not more!           

New layout for my healing palace

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

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

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

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

Training on a grassy hill at a neighborhood park

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

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

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