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!  

Wednesday, August 1, 2018

Continued non-linearity, in two parts

Part I

Hi everyone!  I deeply apologize for the delay.  I have been exhausted for pretty much the entire month of July, ever since getting off the steroids.  In fact, where I was expecting to feel better daily, I seemed to feel worse daily.  I had fevers and headaches daily, and they were increasing in intensity.  Well, this past Monday, we found out why:  I had an MRI on Monday, and it revealed some super awesome very good news for the long term, and some bummery news for the short term.  Long-term super awesome news:  Lloyd is dead!  There is no blood flow to my former brain tumor, Lloyd, and it has changed in appearance in ways that are consistent with necrosis (death).  Additional awesome long-term news:  no new tumors in there!!!  Huzzah huzzah huzzah!! 

Short-term bummery news:  brain swelling has resumed in a major way!  This news was actually rather pleasant because it explained everything that I've been feeling:  headaches, fevers, exhaustion/fatigue, and even nausea to the point of puking (and I'm not a puker)!  It's also pleasant because it's solvable:  back on the steroids.  Boo!  But, I welcome them at this point, that's how awful I've been feeling.  I'm back up to 12 mgs per day for one week, with a prescribed step-down for a month, and another MRI in a month whilst still being on a few mgs of steroids.  Should be informative!

Apparently it continues to be miraculous that I'm not having seizures.  After the doc asked if I've been having seizures and I said no, he asked if I'm on an antiseizure medication.  I said no, not to my knowledge.  Cool.  I'll go with this no-seizure thing.  Maybe it's because of the mad napping/brain resting skillz that I've developed.  Lots of floating, less striving! 

I puked up my first steroid dose, but now I've had two days of roids.  And today I had only a mild headache and no fever!  Talk about fast-acting!  Thanks, dexamethasone! 

Part II

Now I probably should rewind a bit and explain the previous post about my port removal.  At the time I was in the hospital with no laptop, and it's too hard to blog on a little tiny phone.  So, you got a short poem instead of a long post.  Here is the epic tale of the loss of my beloved port:

At the end of June, when my fevers began, Dr. Oncologist first wanted to rule out an infectious source of the fevers.  I had a chest x-ray (negative), urine test (negative), and two blood draws for culturing bacteria (negative from my arm, POSITIVE from my port after 5 days of growth).  So, because the port culture took sooooo long to grow, Dr. O thought it might be a contaminant of the process rather than a real port contaminant.  But, we repeated the test to confirm.  The office called me after three days of growth to say that the cultures were negative, and we proceeded to head to vacation in northern Minnesota the following day.  HOWEVER, after 4 hours on the road, the office called to tell me that in fact my port culture had grown the same bacterium again overnight!  Noooo!  They wanted me to turn around, go home, wait for my fever to get above 100.5, then go to the emergency room.  But I had already been having fevers above that, so we decided to proceed on vacation.  Then Oncology called back and had changed their minds--they wanted me to come home and go directly to the ER for IV antibiotics.  This made much more sense to me, but I still didn't see the point in returning home.  We were 6 hours away at this point!  SO, I dropped the family off at our amazing vacation spot on Cass Lake, then I drove to Bemidji and checked myself into the ER there.  I told them what was up and asked for IV vancomycin.  They tried to repeat the blood cultures, but my port wouldn't work.  I took that as strong evidence that it needed to be removed.  They admitted me on a Saturday night and I received 3 days of IV vancomycin.  My port was surgically removed on Monday.  Then the doctors wanted to rule out endocarditis, which is an infection in the heart that is readily caused by an infected port.  I first had a transthoracic echocardiogram, which is like an ultrasound of your heart through your chest, and no big deal, but it suggested that my heart MIGHT have been infected!  The results were inconclusive.  So then I had to have a TRANSESOPHOGEAL echocardiogram, or a TEE.  I had to be sedated for this procedure, because, just like it sounds, they put a big old wand down my throat to get up close and personal pictures of my heart.  It was like a colonoscopy, but the opposite.  This procedure was my ticket out of the hospital!  It showed that I did NOT have bacteria colonizing my heart, so no endocarditis.  The family came and picked me up and I joined the vacation on Cass Lake on Tuesday night.  I still got to enjoy 3 glorious days of vacation, during which I still had fevers and felt crummy.  So the infected port was not my entire problem.  But it was likely part of my problem!  While I was in the hospital, Dr. O called to say that my arm blood culture also grew the same bacterium.  So that was now three blood cultures showing the same thing--that's an awful lot of consistency to be a contaminant.  Ooo and fun fact:  my culture was sent to the state hygenic lab, and they determined that it was a species of Proprionibacterium, which is a common skin microbe. Relatives in this genus cause acne, but the one that was in my port is not an acne-causer.  They have been known to cause endocarditis, so whew I dodged a bullet on that one! 

A few other terrible things happened at the end of July, including the death of a beloved family member and the hospitalization of another, but there were also some beautiful things earlier in July.  My dear friend R came to visit, and despite my crummies we had a marvelous time.  We attended the town's 4th of July parade and the fireworks, and played games with the girls.  Then I went to see Hamilton with my dear friend D (I still owe you $ for the ticket, D, I haven't forgotten!).  It was SO good!  I didn't listen to the soundtrack beforehand or anything, so I went in blind.  That was totally the way to go!  I was blown away!!!

IMPORTANT REMINDER:  The Carnation Nation Appreciation Party is coming up on Sunday, August 12th.  2-10 pm, with kid activities from 2-5, and the band rockin from 5-9.  We'll have food, too. Cash bar.  My dad made a beautiful pdf file, but I can't get it to upload.  So, I'm just going to be ghetto and printscreen and paste:

Dude, that's not working either.  Enter powerpoint to transform the printscreen, huzzah!:

Sunday, July 15, 2018

Eulogy for my port

Port, I requested your installation 4 years ago
Because you protect me from pain, this I know 
Thenyou tried to kill me
With bacteria you fill me
So tomorrow it is time for you to go.

Your service to me I most appreciate
The awfulness of cancer treatment you did alleviate
I despised you at first,
thought you were the worst
Until the vein access you did mediate

BUT Saturday i was to start vacation with my family
Instead you yielded bacterial growth, damningly
I drove to an emergency room
To stave off my doom
And receive IV antibiotics lengthily 

Now I lie in my hospital bed
Thinking of these words to be said
About the trusty port
I’m about to abort
To delay winding up dead 

Sunday, July 8, 2018

Bodily chaos

Progress is non-linear.  Every day is different; some days I feel pretty good, whereas other days I feel quite lousy.  I have learned that extra-strength Tylenol is quite helpful to take the edge off of "lousy", but the label says not to take it for more than 10 days and I'm swiftly approaching that deadline. 

My bone scan was all clear!  Huzzah!  The radiologist even compared it to my most recent PET scan (May 2018) and confirmed that they both looked great, with no signs of cancer.  Huzzah huzzah! 

BUT Dr. Oncologist doesn't like my fevers.  Dr. Google had suggested to me that fevers are a possible side effect of the steroid step-down, but Dr. Oncologist disagrees.  So at my appointment on Friday, which wasn't until 4:30, I had my blood drawn from two locations (arm and port) to rule out a blood infection, I had to pee in a cup to rule out a UTI, and I had a chest x-ray to see if I have a lung infection.  I am very grateful to the clinic employees who work hard for patients at 6:00 on a Friday even though all of their co-workers left well before them.  For example, the radiology department was completely closed, but the folks up in the oncology department thought that they were to be open until 7:00 pm.  Rather than go home without the x-ray, I happened to catch the last technician on her way out and she kindly agreed to administer my x-ray.  She turned on a computer, turned on the x-ray machine, and took my x-rays.  She was delightful!  Like me she has two daughters, and my daughters' middle names are also part of her daughters' names.  AND her wedding anniversary is my birthday.  It seemed so crazy to discover so much in common!!

I don't have any data yet on the outcomes of these tests, but I have an appointment at 9:00 on Monday to get the results.  Right now, my fever of unknown origin is more or less managed by extra-strength Tylenol so I'm not terribly concerned.  I figure if I had a blood infection, someone would have called me by now, lol. 

The sore spot on my chest that led us to the bone scan recently erupted into a rash, so perhaps that was what was causing the pain.  I have some ointments to calm the rash. 

The fevers have been majorly interfering with my exercise routine.  I have completely fallen off of the exercise wagon, for the first time since this whole ordeal started in January!  But I'm getting back on the wagon as soon as I finish this post.  The fever hasn't yet started today. 

My dear friend, R (not to be confused with M, lol), visited over the 4th of July holiday, and we had a lovely time.  She was lucky enough to be here for my daughters' Taekwando testing for their next level belt, and my oldest's next level will be first-degree black belt and my youngest's will be red belt.  We played games on the July 4th holiday, and the spouse made a fancy hot dog bar inside because it was too rainy to grill out.  We both wish we could see each other more often!  I think that we need to plan a road trip to Boston for next summer.  :)