Sunday, September 23, 2018

Chill out

In the days that followed my MRI, I had appointments with my local oncologists as well.

Dr. Oncologist has been oddly cryptic lately.  At this most recent appointment we talked about diet again, and she made sure I was still eating legumes (beans, lentils, etc.).  I said oh yes, I most certainly am, because they are relatively high in protein and have so many good things in them!  But she didn't make clear why this was important to her, so I'll have to ask next time.  When I told her about my struggles to get off the steroids, she asked me what I was afraid of...?  I told her--nothing!  I have no new tumors, my old tumor is dead, I don't have any fears right now, honestly.  I'm not afraid of getting off the steroids; in fact I yearn to be off of them!  I'm carrying around so much extra weight it's like being pregnant again.  It's exhausting!  But I can feel brain-swelling pressure on my inner ear even right now, guys, and this is after a good night's rest and an "anti-inflammatory" and protein-rich smoothie for breakfast, so I don't think that today is a day to cut my dose at all (I'm at 3.5 mg in morning, 3.5 mg in evening, so I HAVE made a tiny bit of progress.  I was at 4 and 4 when I had all of these Dr. appointments.  Oh!  And I requested smaller-dose steroid pills, so I'm no longer turning my 4 mg pills into dust.  I have 4 mg, 2 mg, and 1 mg pills, plus a pill cutter.  Fun times.).  OH!  And she reminded me to not be too stingy on the sugar reduction, because the brain runs on sugar.  I assured her that I was still eating fruits, and sweetening my smoothies and salads with dates, as well as not being into total deprivation.  I've just cut the crap!  And once you cut the crap for a few days, it's easier to say no.  I'd say the hardest thing to cut that I didn't even know was so sugary was my favorite yogurt.  Oooo I loved the Brown Cow cream on top yogurt!  I've completely switched to FAGE Greek yogurt, because it's 24 g protein per serving, and it was a challenge but now I actually like it.  With dates and things, of course, but I'm getting there.  ;)  The other thing that my colleague and boss, Dr. Immunologist, reminded me about is my little blood-brain barrier crossing chemo drug, Nerlynx/neratinib, that is fighting cancer cells in my brain and body every day.  How is that impacting the brain swelling?  I asked Dr. O about this, and of course her response is that there is simply no data.  We have no idea if or how the Nerlynx has an impact on the current brain swelling situation.  Yet another variable that I can't control. 

Next, I had the best conversation with Dr. Radiation Oncologist.  I asked him what he thought of the MRI result?  And he said that he had only got the written report; the fancy hospital down the road isn't connected to the same handy image network as pretty much everyone else.  So I showed him the picture I snapped, which I forgot to show you in my last post.  Here it is:

On the left is a frame of my brain from Sep. 2018, with the swelling being shown as the white cloud on the left upper part of the brain.  On the right is approximately the same frame of my brain from July 2018, with the swelling in the same location as the pic on the left.  See, even with August's worth of steroids, the swelling was not impressively reduced!  You can't see Lloyd/Pearl because the tumor is in a different frame.  I didn't take a picture of that because it's unchanged. 

He did not have any new interpretations to add, so I asked him my basic questions about how long can this continue?  What else can I be doing to help myself?  etc.  His responses matched everyone elses (the swelling could continue for years, steroids are the right thing to do but yes we also need to try to get off of them, listen to my body and step down the dose when I can but I'm right in that keeping the swelling down is top priority), which is extremely reassuring, but he added some catchy tidbits that I've latched onto.  One thing he said that I love is that, "Simple is not the same as easy."  It is theoretically simple to step down my steroid dose, for example, but it's not at all an easy thing to do.  I liked this phrase because on paper, this whole healing-from-SRS-treatment looked like it was going to be ridiculously simple, and although that might BE true, it's been far from easy.  What I'm doing is not easy, despite the fact that it seems so simple to me, and this simple-is-not-the-same-as-easy framework has further helped me to embrace rather than fight my bodily struggles in the past week (which, as we know, I've been struggling to embrace for months! I'm still not there yet, lol.).

I also followed up with him about Dr. O's weirdness about steroids and fear.  I asked him, what on earth SHOULD I be afraid of about coming off the steroids?  He told me some of the side-effects of long term steroid use (diabetes and a bunch of other things), and I said, but all of that is the lesser of two evils compared to the potential side effects of brain swelling, right?  And he said, right!  So, in hindsight, I think that Dr. O was making a query into my mental health more than making a commentary on the steroids.  That's fine, just confusing for me, lol.

Then we lightly discussed the things I've been discussing with all of the Drs. on my team at these appointments:  do they have tips or tricks for me to figure out how to best balance diet, exercise, rest, and life whilst reducing the brain swelling?  (I want so badly to help myself!  I'm a do-er, and being a do-er has led to my success in pretty much every other life experience I've ever had!)  He has no answers either, but he administered the following advice, "in the words of my daughter, chill out."  So I've been trying to do that!  I've been trying to turn off the analytical mind when it comes to my recovery and just let my body be.  I've received this advice before ("less striving, more floating") and I think it's just really hard for me to execute this.  So...I'll keep working on it, without TRYING to work on it, lol.  My preliminary solutions to get me into this "chill out" or "floating" recovery space are to do more knitting, and more cuddling the girls (for some reason, they've been requesting cuddles lately outside of bedtime hours, so it's perfect).  These are two easy and delightful things to ante-up in my daily life, perceived task list be darned.

Saturday, September 8, 2018

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

On Thursday I had an MRI and consultation with Dr. SRS Expert/Radiation Oncologist at the University Hospital down the road.  Per usual, it was a lovely road trip with my dad (thanks again for picking me up, dad!  It sure was luxurious to rest on the drive home!!).  The MRI didn't show anything that my body wasn't already telling me, but it sure is validating to see the pictures, and most importantly, it's terrific to have the opportunity to talk to the doctor.  In summary, the two important results are 1) Lloyd continues to be dead, with the following being my favorite things in the report, "The previously described heterogeneously enhancing metastatic lesion is overall stable in sizeNo new lesions." and 2) swelling is slightly decreased but still pretty bad.  I could have told you that, lol.  I feel it daily. 

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

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

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

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

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

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

Saturday, September 1, 2018

Bliss list, volume PARTY

Goodness I truly apologize for the delay, both for you and for me.  I have really been struggling with the brain swelling, even with the restart of the steroids.  I just haven't been feeling tip top, and I'm still working in the mornings and doing rest/self-care (e.g., exercise, etc.) in the afternoons and family time in the evenings and going to bed super early, so unfortunately that leaves pretty much zero time for blogging (or anything, really).  BUT this Labor Day weekend I am determined to do some things for myself rather than for the to-do list, so I've been sitting in this recliner for awhile now, just writing.  Kids should have eaten lunch an hour ago...whelp, they can go make themselves a sandwich when they're hungry!  Imma gonna stay here until I'm done with this!

Thank you thank you thank you to everyone who attended the Carnation Nation Appreciation party, both physically and in spirit.  My heart was/is OVERFLOWING with love for all of you!  And I was so surprised by allllll of the people who came from near and far!!  I won't call out everyone, because I don't want to accidentally leave anyone out, but I am seriously grateful to have hugged you, whether you are friend or family from Iowa, Nebraska, South Dakota, North Dakota, Minnesota, Wisconsin, New Mexico, or Washington.  I wish I could have spent more time with each and every one of you!  But at the time I was mindful of the present moment, and I truly relished the time I sat with you, or hugged you, or danced with you.  I miss you even more now!!!

I have scant pictures from the party; only a few from people's Facebook posts (THANK YOU).  I took zero photos (see the bolded statement above about about the present moment; being present means that my phone was put away!).  SO, if you have some great ones, send them to me and I'll do another CARNATIONS PARTY bliss list!

Without further ado, here is what is on my heart for the current Bliss List, volume PARTY:
  1. The man, the legend, the head of the party planning committee, and my whole HEART: my dad.  This guy has boundless energy, intelligence, kindness, and generosity.  I am the luckiest kid in the ever-expanding universe.  I hope you met him at the party!  This party wouldn't have happened without him.  He and I sat in an oncology waiting room in the winter, and I was like, I want to throw myself a party, and he was like I want to throw you a party.  And then I was like, yep, you can throw me a party, and I didn't LIFT A FINGER!!!  Well, except for band research, and the superheros.  I knew exactly what I wanted in a band, so I helped pick/find the band.  But dad's the one who found them and beta-tested them!  MAJOR props, dad!!!  The band was EXACTLY WHAT I HAD IN MIND!!!!  (more on the band in #5)
    My pops.  Uncle Rod, thanks for this photo.  It makes my heart as swollen as my brain.  
  2. The party planning committee.  I don't think I can ever thank you guys enough, so hopefully I've paid it forward, as they say, in my previous years.  And I'll never stop trying to fill your buckets up as much as you've filled mine.  Thank you so much for your hard work, and for your excellence with PLANNING.  I myself am not a very good planner, so I do truly admire your planning skills.  You thought of EVERYTHING!  The venue was stunning, the food was delicious and plentiful, and the kids' activities were bangin', especially whomever was rocking the facepainting.  That was some SOLID facepainting!  L and M, I'm so grateful to your friends who came to run the kids' games!  They were terrific fun to dance with, too!  I looooove their energy!!  I really think that the kids activities were the highlight of the party.  I think my friend A's kid said it best:  her kid is greatly looking forward to the next party.  Bravo, and thank you!
    Carnation Nation Appreciation Party Planning Committee 2018
  3. The Avengers of the Knights!  Thanks for coming to my party, superheros!  They did a great job and the kids loved them.  Here I am with Batman, Captain America, The Flash, Hawkeye, Black Widow, and most of my nieces (not pictured: sleeping baby Alice) and nephews/ninja turtles!  SO special!!!

4.  My siblings.  I love you guys so much.  We're so different, but we're also the same, and I'm grateful for all of our differences and similarities.  Well, most of them (lol).  One of my favorite moments of the night was when the band played "Seven Nation Army" by the White Stripes and we all stopped whatever it was that we were doing to meet each other on the dance floor.  You all did air guitar; I'm pretty sure I refrained from the air guitar, sorry.  But it was such a JOY to watch you all headbang and air guitar!!!  Whenever I hear that song I think of our Thanksgiving road trip to visit Grandma Kati in New Mexico, and a light snow squeaking off of the windshield of that smelly Taurus (or was it Ryan that was smelly? It must have been Ryan because maybe we took my Saturn, and that car wasn't smelly) as we pulled into that creepy hotel outside of Wichita for the night.  A seven-nation army couldn't, and didn't, hold us back, lol.  

My brother and his Wonderful partner.  I am so grateful that you made the trip from Seattle!  I ADORE both of you!!

My sisters, #twinning it hardcore at the party.  I ADORE you both, even though I can't #twin with you!!

5. The Final Mix Showband!  Oh man, these guys have talent and heart and charisma!  By the end of the night I felt like they were a part of my family.  They had an awesome playlist and made it really hard for this brain-swollen girl to sit down and take breaks.  Every time I would sit down, they would play something completely irresistible and up I'd be!  So much AWESOME!!!  Thank you for being YOU, and for playing our Carnation Nation Appreciation Party!  And best of luck to one of the lead singers, who is also a cancer survivor.  You've got this!
6. Twelve One Videography.  Thank you SO much, DC, for documenting this party for us.  I'm so, so grateful that everyone walked out to the hill, despite the heat and party interruption, for you to take this glorious drone footage.  I can't figure out how to save the drone footage to my computer, but if you're a Facebook user you can view it through the Twelve One Videography page.  Here is the link to the Carnation Nation Appreciation party drone footage via Facebook.  I have no idea if this will work or not, lol, so good luck.  :)
7. Whomever sent ~100 stems of carnations to my home!  The card only said "Enjoy the flowers".  We put them to good use at the party!  Carnations were everywhere!  And after the party their beautiful aroma filled our house for weeks.  So, thank you, mystery carnation sender.  We appreciate your generosity!  
8.  You see those awesome Carnation Nation t-shirts in the pictures?  My cousin, B, organized those.  I think that she's placing another order, so please email me at "30carnations at gmail dot com" if you're interested and I can give you her contact information.  Thank you SO much, B, for your leadership and hard work on this effort!  You did an awesome job, and the shirts are wonderful!!
9.  It's a little bit dark, but I think that the following picture best summarizes how awesome this party was.  I love you, Junie!