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! 

Alternative Hypotheses

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

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

OR MAYBE...

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

OR MAYBE...

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

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

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

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

Lloyd's unwelcome return

If you are one of those people who was a bit worried about me today, thank you, and your fears were not misplaced.  Today's MRI showed that the tumor in my brain is growing again!  It measures a bit larger than it was at my February MRI, and the adjacent swelling is increased.  Noooo!  No part of me considered this a possible outcome of today's scan.  Grrrr! 

On the plus side, I learned that my headaches are real, and that I've been stepping down my steroids too quickly in the context of the tumor growing.  I get to increase my steroid dose slightly (Dr. O said to go up to 2 mgs per day--I've been at 1 mg every other day).  This is a big-picture bummer because I was looking forward to being done with the steroids, but this is an immediate relief because I've been feeling rather crummy (headaches, fatigue) between steroid doses.  Needless to say I already popped my 'roid today, even though I normally don't take it until dinner, because I haven't had any since Saturday evening. 

So, what do we do about Lloyd?  Right now I'm waiting for the big University hospital down the road to give me a call to schedule an appointment with a neurologist.  Dr. Neurosurgeon will evaluate the situation and tell me if the tumor can be surgically removed or not.  That is the only route that I'm aware of at this time, although further routes will likely become available as I get more information from Dr. Neurosurgeon. 

DRAT!  On so many levels. 

Save the date: Carnation Nation Appreciation PARTY!!!

Hello everyone!  I am thrilled to announce that we are having a party!  This summer!  And there will be a wonderful band and hours of dancing!!!

What:  Carnation Nation Appreciation PARTY
When:  Sunday, August 12, 2018, 2-10 pm (music from 5-9-->come early to visit, stay late to dance!) 
Where:  Mooselodge (same place as the Huzzah benefit party in 2014)
Misc:  The talented, energetic, and entertaining Final Mix Show Band will be playing!!  We'll serve some sort of food.  This will be a family-friendly event, with activities for the kids. 

Further details will be revealed as we plan them.  Ooo I hope you can come!!!   

Why are we having a party?  Well, during my cancer-free years I've been secretly planning a party, in my head, for the year 2020 (I was hoping to remain cancer-free until at least 2020).  In 2020 I will turn 40 and celebrate my 20th wedding anniversary; those are two big milestones!  Earlier this year I decided that perhaps I needn't wait until 2020--I should have a party NOW, then I can have another party in 2020 if I'm so fortunate to be around to do so.  About the same time that I was deciding not to wait until 2020 to throw myself a party, my dad and I were in a waiting room and he leaned over and said something like, "Hey, kid, I want to have a party for you."  And I was like no WAY, me too!  So now my dad is doing pretty much all of the legwork for my party (he's even talked of forming a party planning committee!).  I told you he's the best (I am SO lucky to be his kid!)!  You know what else is the best?  The Final Mix Show Band is going to play this party!  I want to dance with YOU!!  We have some other party tricks up our sleeves, to be announced once they are more fully fleshed out.  Holy cow, it's going to be such a blast.  I'd be honored if you'd save the date and plan to attend!

In other news, I had a check-up today.  Inputs:  I told Dr. Oncologist that I'm working half days; that's fine.  I told her that I'm headachy; that's less fine.  I told her that I'm down to 1 mg steroid every other day; apparently this is also less fine (I got the impression that she wanted me to be completely off of the 'roid by now, but I'm just listening to my brain pain!).  As a result, I now have an MRI scheduled for Monday morning to check on the status of my brain swelling and Pearl, and if everything looks good I guess she'll tell me to stop taking the steroid.  Cool!  I like using data to inform decisions. At that time I'll ask her what I should use to medicate the headaches, if not the steroid.  I'm unclear how to handle that--I thought that that was an indication that I still needed the steroid.  This is steroid step-down / brain pain is so confusing! 

Another outcome of today's appointment is super frustrating:  I'm going to be taking antibiotics for the next three months!  The horror!  (As you know, I study antibiotic-resistant bacteria, and prophylactic antibiotic use is one of my pet peeves, for good reason--antibiotic use selects for antibiotic-resistant bacteria, and so antibiotics should be used prudently.)  The reason for the antibiotics is because apparently taking high amounts of steroids for a long time puts you at high risk for a certain type of lung infection called Pneumocystis pneumonia. The steroids have weakened my immune system, and apparently it'll take awhile for my immune system to get back up to speed, so Dr. O wants to protect me from this very dangerous lung infection that is very easy to get.  I can get on board with that (I SUPPOSE that I can agree that prophylactic antibiotic use in an immune-compromised patient is prudent use), albeit reluctantly.  Taking antibiotics can also cause diarrhea, as you well know, so it'll be interesting to see how my guts handle the antibiotics along with the neratinib (my daily chemo drug), which also causes diarrhea (in my body, only occasionally so far). 

Long story short, I thought this was going to be an easy peasy appointment, and it was (my heart is in great shape and my blood work is in great shape, huzzah!), but I got some homework!  ;)