Thursday, January 3, 2019

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!!! 

Tuesday, January 1, 2019

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!!



Tuesday, December 18, 2018

Beyond Gratitude

Carnation Nation, I am delighted to announce that you and my family did a very cool thing last week!  We made a charitable donation to my oncology clinic, directed toward oncology patients who need financial assistance for gas, food, etc. during their cancer treatments.  We made this donation in tribute to the specific physicians, nurses, and staff who have kept me alive this long (I specifically named individuals, which is terribly risky because I'm sure that I inadvertently forgot someone, but I'm trying not to worry about that).  And the FUN part was that the clinic organized a small surprise ceremony to honor the tributees and present them with a commemorative lapel pin.  My family was invited to attend, and the organizer said that they'd never had so many family members attend one of these before (I'm not surprised...my family is off the charts amazing!).  My heart was/is overflowing with gratitude for all of these people.  So many hugs were administered!  It was wonderful!!  Thank you, Carnation Nation, for making it possible to express our gratitude in such a profound way!!

My family with my Radiation Oncology Family. Hilary, your children's outfits are ON POINT. So adorable!  

My immediate family with my Radiation Oncology family. 

My immediate family with my Medical Oncology family.  I am a gigantic human in this photo!!  I've always been a back-row human, but they wanted the family in the front.  And my kids are adorable!
During the celebration, a member of the Medical Oncology family asked where my brother was?  My sister responded, oh, he lives in Seattle.  To which the Medical Oncology person shrugged, because she knows him as the guy who shows up.  You were missed, brother!  Can't wait to see you this weekend!!

My dad took us out to dinner afterwards to celebrate the occasion; the joy was running high, and it was lovely to keep it going.  Grandpa let the kids order the fancy desserts that they had been oogling in the case before we were seated, so everyone was super happy.  My sister's kids, in their matching outfits, about burst my heart!!!  Those smiles!!  Nothing beats cousin time for these guys.     

Happy kid table! 

Family dinner.  So special.  Thanks, dad and bonus mom!!

Sunday, December 16, 2018

Fuzzy

We did it!  We shaved my head.  And I love it.  The long hair falling out was so messy.  Now when the remaining hair falls out it will just be little bits.  And I can oil up my scalp!  The girls had fun cutting it with scissors before the spouse took the clippers and buzzed it for me.  I appreciate their support so much!  Simple isn't easy, but hopefully they found a little bit of fun in this unique experience of cutting your mom/wife's hair because it's falling out everywhere.  This time I'm rocking the baldness WITH eyebrows!  Trust me...it makes a difference! 

The scalp isn't even the itchiest part--for some reason, my forehead is terribly itchy.  I'm putting Aquaphor on it, and that provides a little bit of relief.  But the skin appears to be completely fine.  It's not red or flaky or anything.  Just itchy.  When all is calm and I'm trying to rest, the inside of my forehead feels itchy, too, like the inside of my skull, so maybe it's just a sensation?  Who knows! 

Other new things:  super watery eyes and screwed-up tastebuds!  Perhaps whole-brain radiation is more like whole-head radiation! 

I've achieved my maximum dose of the short-term memory preservation drug, so hopefully I'll start to get used to it soon and stop being quite so tired.  Also, I've resumed my attempts to decrease my steroids--my plan is to try to reduce my dose by half a milligram a week, and I started Monday!  So far, so good.  My head doesn't feel any worse.  Huzzah!  Simple is not easy. 

At the family holiday party yesterday, Aunt Sandy kindly pointed out to me that the wooly bear caterpillars in my brain will eventually turn into moths and fly away, carrying Lloyd with them.  That's so wonderful!  Thank you, Aunt Sandy!  For now they seem to be enjoying their campout.  They are welcome to stay free of charge until they've burned Lloyd out completely. 

Image result for woolly bear caterpillar turns into
https://northernwoodlands.org/articles/article/transformations-which-caterpillar-becomes-which-butterfly



Tuesday, December 11, 2018

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.  

Image result for fuzzy caterpillar

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.  

Wednesday, December 5, 2018

What I'm not doing right now

I'm not walking to radiation treatment right now.  Huzzah!!  It was so hard to remember to go at first: I would be at work, happily working, and then tear myself away and hustle to the clinic.  But now it feels unusual to not have to do it.  I think I'll briefly walk the dog instead.

Thor!  My dad once said that he's the second cutest dog he's ever seen.  I like to taunt Thor about the elusive identity of THE cutest dog, but Thor doesn't seem to take it personally.  Also, don't let this sweet face fool you--Thor is a murderer!  He is a major bunny/squirrel/chipmunk hunter.    
I'm also NOT pulling my hair out (although I kinda am...it's pretty hard not to, because my head is slightly itchy and I was already a hair-toucher).  It doesn't hurt at all, it just comes out.  I'm considering letting the girls cut it off later today, but first it'd be nice to know if it's coming out in patches or all over.  I'm more likely to let them cut it if it's coming out all over.  If it's just patches, I'd rather keep some long hair to cover up the patches.  I had the spouse look at it, and not enough has fallen out for him to determine.  Maybe by the end of the day the situation will have changed.   

I'm also NOT absolutely abiding my diet.  I'm still striving for at least 20 g protein per meal, but I've gotten a little bit lax on the sugar thing.  Some delicious holiday cookies have entered the house, and I am thoroughly enjoying them!  But hopefully not too many of them.  ;)   

Tuesday, December 4, 2018

Whole-brain radiation--DONE

I received a certificate today for completing two weeks of whole-brain radiation.  Whew!  That was more stressful that I'd anticipated.  I'm feeling pretty glad that the ordeal is over.  I don't think the side effects are done accumulating yet.  My hair started falling out in earnest today, for example, and my head feels burn-y both inside and out, leading to the following one-hit wonder earworm from 1993 (middle school):

This head [bed] is on fire, with passionate love.
The neighbors complain about the noises above.
...
My therapist said not to see her no more
She said you're like a disease, without any cure
She said I'm so obsessed that I'm becoming a bore, oh no.

--band is called James, song is called "Laid"--it's not a very good or appropriate song for a family blog like this one, but it's what happens to be playing in my head ALL THE TIME ever since I thought of the words that my head is on fire.  Which was days ago!  Extra-strength Tylenol helps to quench the flames. 

The other earworm that has been plaguing me is from a save-the-rainforest movie we watched in maybe third grade or so.  K, up in the northwoods, or my multitude of siblings, perhaps you'll remember this with me?  "The RAINforest...the tropical RAINforest."  In my head it has become, "A BRAIN tumor...inoperable BRAIN tumor."  Such a catchy jingle!

The fatigue has situated in the bones a little bit.  Not as bad as chemo, but definitely feeling fatigued in addition to the clinical sleepiness I mentioned before.  It sorta feels like walking around with cinder blocks strapped to your bones.  But I'm doing very well listening to my body and recovering.  Not doing too much at all, I promise.  So much sleep to be had! 

Managing to fit in some holiday family time, too!  My dear friends A&M&E brought us the baked pieces for building and decorating gingerbread houses, so we've been working on those here and there.  Also, before my mom's departure she took us for a spa pedicure.  We now have festive toenails! 

Building the houses is the hardest part!  They needed to harden for a day or two before we decorated.  The girls are having a ball with this project!  Usually when we've done gingerbread houses we've used the hard store-bought kind and then assembled with hot glue, because it's so much easier.  These might be our first authentic gingerbread houses that are actually edible!   
And let's do a few more Puerto Rico vacation photos, shall we?

moon (lower left) over San Juan

E being pushed into shore on her body board

All of my loves enjoying the ocean at Condado Beach.