Friday, May 24, 2019

Pearl does not exist

So, today's scan confirmed, beyond a doubt, what has been suspected:  my unwelcome brain tumor, named Lloyd, is indeed growing.  It was noticably bigger in the past 6 weeks since the last scan, and if you line up the same cross section from a whole bunch of scans you can see that it is clearly getting bigger over time, since before whole-brain radiation.

We still don't have a firm plan for the next steps.  BUT some things are in motion.

I really don't want to go to Florida for brain surgery.  I think it would be a very inconsiderate choice for my family.  What if I don't wake up?  Or am incapacitated such that I can't return to our Midwestern home for months?  Does the family move to Florida?  That would be terrible.  SO, I had a top secret consultation with my original Dr. Brain Surgeon, to ask him questions about the surgical risks and options now that all non-surgical options have been explored.  Just the spouse and I went, thanks to my amazing MIL for taking the girls for a sleepover and bringing them to school that morning.  Dr. Brain Surgeon is also Prof. Department Chair of Neurosurgery.  He said, I have a guy in my department who is an expert in deep-seated brain tumor surgery.  Can you wait an hour and a half to consult with him when he gets out of surgery?  We said of course!  So, we got some coffee and visited the medical museum while we waited. 
iron lung.  Thank you, polio vaccine, for making this machine museum material!!
Dr. Deep-Seated Tumor Neurosurgeon was awesome!  He apologized for making us wait, and we tried to thank him for working us into his schedule on what was clearly an operating room day for him and not a day in the clinic.  He came to us from a brain surgery, and when we left he was proceeding to another brain surgery!  Bonus was that he had heard of Dr. Florida Neurosurgeon and says that he uses the same technology (BrainPath).  And he was confident that he could remove 90-95% of Lloyd if that is what we decide to do.  One of our questions was if that was enough.  As in, how much time will I have, and what quality of life will I have if I do/don't do surgery?  Because I'm willing to go out with Lloyd gracefully if the risks outweigh the benefits of surgery.  We just aren't sure yet.  The main long-term risk of Lloyd removal include loss of function of the left side of my body, the main short term risk of Lloyd removal is fluid build up in the cavity left by Lloyd's removal.  Dr. D-STN would install a short-term drainage tube should this happen (sounds horrible!!). 

Dr. SRS Expert Radiation Oncologist said that if Dr. Deep-Seated Tumor Neurosurgeon can get out 90-95% of Lloyd, he can give any remaining pieces targeted radiation.  This was very good news!  Because one of the things about surgery is that they can never get all of it, and surgery is usually followed up with some other treatment.  So I was excited that, although I previously understood that the region can't have more radiation, if the region to be targeted is smaller then yes in fact I can have more radiation.  Also, these doctors are going to bring my case to their institution's tumor board on Tuesday to discuss the best course of action with all of the cancer experts at the institution.  So, I'm in really good hands guys.  

Only other thing is that Carnation Nation has struck again!  The sister of one of my dearest friends from grad school, K, emailed me to tell me that a new immunotherapy called CAR-T has just opened a clinical trial for patients with Her2+ brain metastases.  I've tried to call the hotline and get information but just get voicemail.  And I'm too tired to put all of the right links here for you guys to learn about this...I'll get em in my next post.  But suffice it to say that CAR-T involves harvesting some of your body's own immune cells, (specifically T-cells), probably and hopefully from a blood sample, and engineering them to attack the cancer cells in your body.  I SO hope I qualify for the trial!  I'll be my own GMO!!  Thank you so much, A, sister of K, for telling me about this trial!!


Friday, May 10, 2019

Roller coastering

Okay!  I finally have an appointment at the Mayo Clinic, but not the close one in MN.  At the Mayo Clinic in Jacksonville, Florida!  Long story of roller coastering between phone calls with incremental updates.  I'll try to be brief.  

So, you'll recall from my previous post that the current situation is that the docs think that Lloyd is not quite dead.  I'm not yet all in on that conclusion, because the conclusion seems to change from scan to scan.  One scan is all high fives, tumor is dead!  And the next scan is all heavy hearts, Heather your big ass boob of a brain tumor might be yet alive in a small piece of itself.  I have another scan on May 24th, and from that it might be more conclusive if it is indeed bigger, and where it's bigger, and how quickly it's growing, etc.  In the meantime, I've gone up to 3 mgs of steroids per day, and I'm much more comfortable, and I'm hoping that being on more steroids will also help the outcome of the scan.  As in, maybe my swelling will be less, and so Lloyd will be less aggravated and look more Pearl-like.  It's all about appearances.  We need a Pearl-like image, not a Lloyd-like image!  

In the meantime, I have been working on a referral to the Mayo clinic in Rochester, MN, to see if they have any additional treatments to offer me.  My entire medical record was sent up there last week. The nicest person, Ann, called me with some questions, because my record is so lengthy that they were having trouble getting the chronology right.  She asked what my current problem is?  Lung metastases or something else?  I was glad to say that the lung metastases are all gone, but I was troubled that they seemed to have missed the point that I have an enormous and ongoing brain tumor!  After I answered her questions it seemed like we were all on the same page in regards to the purpose of the referral--what can you do about Lloyd?  Then the Mayo Radiation Oncology Docs reviewed my case for a few days.  Unfortunately when Ann called me back, she said that they determined that they had no further treatments to offer me.  They agreed with my local Dr. Rad Onc that I've received too much radiation to the region already.  BOO!  BUT they gave me a twinkle of hope; they referred my records to the Mayo Neurosurgery department to see if I was a candidate for this new surgical treatment called LITT (Laser Interstitial Thermal Therapy).  Apparently it's a minimally invasive procedure whereby the surgeons implant a little thing in the tumor that emits heat and cooks the tumor dead.  I was super excited for about a day, until Ann called me back to say that the Mayo NeuroSurg team determined I'm not a candidate for LITT because Lloyd is too big!  Ann is so sweet--she sounded like she wanted to reach through the phone and yank Lloyd out of my head for me.  She was very empathetic about the news that Mayo MN was not going to help me in any way. 

Before Ann hung up the phone, I said hold on hold on hold on!  My sister (Holly the Hero, mother of Calvin the Cure) found a surgeon at the Mayo clinic in Jacksonville, Florida, who has developed a new technology to remove deep-seated brain tumors such as Lloyd.  I asked if anyone in the Mayo MN Neurosurgery department knew about this or could do it.  Ann took this comment back to the doctors, who then referred me to this NeuroSurgeon at Mayo in Florida.  The NeuroSurgeon in Florida has already reviewed my records and thinks I'm a candidate for his procedure.  So now I have an appointment in Florida in mid-June to discuss a possible Lloyd removal option.  Not sure yet if I'm actually going to go, but I have the appointment if I need it.  It was funny making the appointment, "Are mornings or afternoons better for you", "Well, I haven't looked at flights yet, so who knows."  Here is a news article about his technology  My understanding of what's special about their procedure that they use pliable instruments instead of metal instruments and then follow the natural paths of tissues in the brain, instead of just jamming through the most direct route to the target and damaging tissues along the way.  The doctor I have an appointment to see just published a scientific article showing pretty darn good outcomes     Conclusion: (pasted from the article linked in the previous sentence) This minimally invasive approach can be used to achieve extensive resection with minimal morbidity for arguably the highest risk metastatic brain tumors. So, I'm still on the roller coaster ride (somewhere).

As I've been thanking Holly almost daily for finding this possible treatment for my Lloyd problem, she sent me the most hilarious message.  It's a quote from the movie Billy Madison, which was a family favorite when we were teenagers.  

Woah woah woah Miss Lippy!  The part of the story I don't like is that little boy gave up looking for Happy [the lost dog] after an hour.  He didn't put up posters or anything.  He sat on the porch like a goon and waited.  That little boy got to think:  you got a pet.  You got a responsibility.  If your dog gets lost you don't just look for an hour and call it quits.  You get your ass out there and you find that f****** dog!    

Holly, I deeply thank you for your hours of hard work "hanging up posters" and getting your "ass out there" for your lost dog and big sis. <3  At the present moment, your research has turned up the best option I have!  But I'm yet holding out hope for a Pearlish result on the next scan, however unlikely that may be. 

Russ and his Roller coaster Ride with Rainbow the Rooster

One more roller coaster story for you, and some of you may have heard this story in person because I've gotten a lot of mileage out of this great tale.  This roller coaster is about my dad, Russ, and his Rooster named Rainbow.  My dad told me this story over our lunch date at my last MRI appointment, and I thought I was going to die laughing.  Russ is mild-mannered, no-nonsense backyard chicken guy, with about a dozen chickens in his flock at any one time (until the fox or coyotes or raccoons disappear some into the woods).  Well, the last time he restocked, he accidentally ended up with one rooster.  He kept the rooster, which is a beautiful bird, and the grandkids named it Rainbow because its feathers are much more colorful than the hens.  Well, Rainbow was a delightful family member for the first few months, crowing pleasantly in the morning and participating in normal free-range flock activities, such as pecking in the garden, or romping with the dogs and cats.  But then Rainbow hit puberty and charged my dad.  Several times, perhaps, I guess?  Well, my dad was having none of that!  What if Rainbow were to attack a grandkid?  So Russ decided to teach Rainbow a lesson.  He marched into the house and put Rainbow up for sale on Craigslist!  It was time for Rainbow to go. 

But I'm delighted to report that after a few days had passed, Russ and Rainbow worked out their differences!  Rainbow started behaving like a perfect gentleman and even let Russ pick him up on occasion.  So Russ removed Rainbow's listing from Craigslist.  Apparently Rainbow has been well-behaved ever since, and Russ has sworn to never put him on Craigslist again.  Rainbow remains a member of the flock for now!  Although Russ continually questions if Rainbow's incessant crowing annoys the neighbors or not.  Rainbow is a vocal rooster! 
The moral of the story is...don't misbehave at Grandpa Russ's house!  He'll try to unload you on Craigslist!   

Wednesday, May 1, 2019


Quite a bit has happened since my last post, but also nothing at all.  The full radiology report of my previous brain MRI scan was released the day after I blogged, and I have since visited with both Dr. Radiation Oncologist and Dr. Medical Oncologist.  The full radiology report said that my scan result was consistent with "disease progression".  This is because in addition to the swelling, Lloyd has a corner with increased blood flow.  But there is still uncertainty about what's going on in there because the increased blood flow is not associated with increased thickness or other signs of growth.  SO, we're consulting with experts as if Lloyd is still growing, but we're not rushing into any treatments or decisions.  I'm having another scan on May 24th, to see if it is more definitive or if Lloyd has changed in the 6 weeks between scans.  That would be informative.   

Next step:  get a referral to another medical facility, the Mayo Clinic up in Rochester, MN.  This is because Dr. Radiation Oncologist says he can't give me any further electron-mediated radiation to the site of Lloyd.  The risks to my healthy brain are too great.  But he said that his colleagues at Mayo Clinic have a photon radiation that might work for me.  Apparently we have more ways to control photons than electrons, so the photon radiation can be more finely tuned and will not cause as much collateral damage.  So, I'm somewhere in the process of pursuing that appointment in the next two weeks (hopefully I can get in before the next brain scan).  

Next step:  meet with Dr. Brain Surgeon again, see if he's got any news or ideas.  My sister found a news article about a doctor at the Mayo clinic in Florida who developed a new surgical tool/method to remove deep-seated brain tumors such as mine.  I'm not booking tickets to Florida or anything, but I do think it's worth discussing as Lloyd continues to be undead!  

Next step:  book an additional family vacation.  I've already made arrangements for us to go to the Black Hills (i.e. Mt. Rushmore, etc.) in August, but if Lloyd is undead this seems like too long to wait.  So my genius spouse said, how about we take two vacations?  YES.  YES.  That is a WAY better idea than the hassle of rebooking!!  My brother and his wife just bought a new house (they haven't even moved in yet, lol), so we might go to Seattle and bother them for a week.  We can help unpack!  Or cook your meals while you unpack!  Additional motivation for vacation #2 is my dear friend, G, who passed away last week from metastatic breast cancer.  I've gotta make the most of the days that I have!  We all do, really. 

ALSO, I've increased my steroid dose to 3 mgs per day and am much more comfortable on most days.  I guess I didn't even realize how uncomfortable I'd gotten!  But my head is feeling a touch better, so thank you, steroids.  

ALSO, we have some fun projects going on!  The spouse demolished the old wooden and somewhat rotten shed, and has ordered a new 10 x 20 shed!  It's basically a small house!  We don't have a garage, so we're super excited about this extra storage and work space.  It has two lofts in it, so the kids are hopeful for a play area.  My best friend growing up had a play area in the loft in her garage.  I always wanted to play up there!  But it was prohibitively hot most of the time.  

My project is that I'm painting the upstairs bathroom.  It's merely halfway done, but the girls enjoy helping me.  One more afternoon of good energy and it'll be done!  I picked a shade of blue that was recommended as inspiring "serenity".  I was a little worried it'd look like that country blue from the 90's, but that is not at all the case!  On the wall, it has a pleasant greenishness to it.  Huzzah!  
Image result for valspar blue tea

A few more pics from our joyous spring break trip to Santa Fe!  I failed to get them to post in order, but I think it won't trouble us too much. 

My stepdad is a professional oil painter (artist), and his art studio is attached to his home.  He graciously shared his materials and expertise for a few hours of painting.  E was calling herself "Mona Lisa #2" as she posed for a portrait painted by A.  E was very patient and only got up for 2 breaks.   

Portrait is coming along nicely!

This is right outside their backyard, rural Santa Fe, NM.  Hiking to the arroyo (dry creek bed).

On our hike to the arroyo.

Also on our hike to the arroyo

Before we went to Santa Fe, we stopped at the Great Sand Dunes National Park.  The dunes are shown here as the gray material between the greenery on the bottom and the mountains in the background. 

My spouse turned into a little kid at the sand dunes!  He took off with his sand sled, heading for the tallest dune within reach, and we didn't see him for 20 minutes.  He came back to us looking like this.  Ha! 

The family, holding our rented sand sleds.  The park does not rent the sleds in the off season; you have to plan ahead and rent sleds from a nearby outfitter. It was such a beautiful day to visit this park, sunny and not too hot or cold.  

The beautiful snow made for wet sand, and wet sand is not good sledding sand.  Here is E struggling back up a dune.  She had a blast!  Said she felt like a fairy in a sandbox. <3

Friday, April 12, 2019


Well, in the car I was telling dad how I'm trying to get out of the habit of ascribing either a positive or negative value to these darn scans.  It's just data, and in this case it truly is neither good nor bad.  It's just more of the same, and I'm fine with that.  1) no new tumors!, 2) I'm comfortable and I'm not having debilitating side effects!, 3) my brain swelling is increased (in other words, worse, but I said I wasn't going to use a word like that), 4) Lloyd is still there, obviously.

So what do we do about the dang swelling?  Same as always...increase the dang steroid dose again.  Dr. SRS Expert suggested 2 mgs in the morning and 2 mgs in the evening.  I countered, could we just try 2 mgs in the morning, since I'm not having seizures, etc., and this is just a preventative thing...?  He said that that's fine.  SO, hbomb continues to over-achieve at swelling and under-achieve at getting off the steroids.

Although I'm not having terrible side effects, in hindsight I think I can tell that I have brain swelling.  When I stand up too quickly, my head starts to throb.  And my ear still feels pressure-y, it's never gotten better.  And I don't know if or how this relates, but my jaw has been sore lately.  A short list of things that are hardly worth complaining about, but perhaps are indicative of that which I cannot see. Otherwise and thankfully, my body isn't giving me much information about how much swelling is going on in there.  Quality of life = high.

Well, I was going to delight you with more spring break photos, but technology is failing. time!  Thank you for your support, dear ones!  Have a swell weekend!

Wednesday, April 3, 2019

Pretty awesome!!

Who has a blog?  Me?  I have a blog?  Huh.  But there's all of these other ways I like to spend my time, too.  Well, that doesn't mean that you no longer have a blog, hbomb!!

I apologize for the delay, Carnation Nation!  Suffice it to say that I am rocking it in all sorts of dimensions.

And I do have several (small) recovery updates for you.

First, the never-ending drama with the steroids.  I have stepped down to a mere 1 milligram (mg) of dexamethasone per day.  I am very proud of this, and I am very physically comfortable at this dose.  I tried 0.5 mgs per day for a week, and felt moderately awful.  Headaches and nausea, which could mean either brain swelling OR discomfort due to underperforming adrenal glands.  I don't know how I'm to tell the difference!  So I bounced my dose back up to 1 mg.  Talked to Dr. Oncologist about this, and she said it's still too high of a dose for my adrenal glands to start making my own steroids, so I do need to come down/off eventually.  But I have an MRI next week (Friday the 12th)!  So she agreed that I could hold at this dose until after the MRI.  Huzzah for comfort and ease in the meantime!

Second, I have been soooo fortunate to be one of (what seems to be relatively few) chronically ill patients that had never had a problem with her health insurance.  Well, my health insurance, which has been awesome for a decade and has not denied a thing that I've needed to survive, denied my oral chemotherapy for 2019.  Turns out that this type of thing happens so frequently to so many patients that my cancer center employs a person who's entire job it is to find a way to get the needed care (this person even crafted the refutation and submitted it to my insurance company on my behalf.  Insurance denied it a second time.  SO this dedicated person contacted the drug company directly and somehow they agreed to give me the drug for free for a year.  My chemo shipment arrived at my house the day after I ran out of the pills from my previously insurance-approved prescription.  High drama! 

More drama:  The literature that came with the chemo shipment from the drug company was slightly different from the literature I had received from the previous pharmacy.  SO, I read it.  And in my reading of this new literature I discovered something:  my chemo, Nerlynx, interacts with another drug that I have been taking allllll year, Zantac.  (I've been taking the Zantac to prevent ulcers that would be caused by the steroid.  You might be asking, but Heather, why did no one mention the interaction between Zantac and Nerlynx previously?  Well, according to this literature, Nerlynx interacts with too many drugs for them to list them all on the paper.  They just happened to choose Zantac as one of the top 6 to highlight, so I got lucky in my reading.  But yea, it definitely seems as though my original Nerlynx pharmacist should have caught this months ago).  GUYS, I think that this is why I have not had the terrible diarrhea that is supposed to be caused by the Nerlynx (thanks, Zantac!).  My guts are not in fact a medical marvel.  So, this new-to-me literature said that if you must take Zantac, take it 10 hours before Nerlynx or 2 hours after Nerlynx or both.  Following these instructions does in fact allow my body to produce the famous watery side-effect of Nerlynx.  But it's not daily or constant, so perhaps my guts are indeed special.  I do think it's better (less watery diarrhea) if I eat oatmeal for breakfast (I know who's not surprised by this result--Dr. JT, PhD).  But this is just a guess right now, not rigorously tested.  But you'd be hard pressed to get me to eat anything other than oatmeal for breakfast now that I've got this notion in my head, so this hypothesis may never get tested.

I've been working!  Not quite full time hours, but I'm creeping closer and closer.  Still get quite fatigued and need lots of sleep at night, but it's getting better!  And everyone needs good sleep at night.  Occassional naps are not denied. 

Other news:  my hair has started to grow back in places.  I still have baldish-spots.  I say ish because there are light (not gray, I don't think!) thin hairs in the bald spots that never fell out, and I think that those hairs are growing.  But my dark brown hairs are the ones that did the falling out, and those are growing back in some places better than others.  It looks sort of ridiculous right now, but I'm not terribly concerned.  I greatly enjoy rubbing my head, and not having to do my hair in the morning (not that I ever did anything in particular with it).  As promised by Dr. Radiation Oncologist, I do have a reverse mohawk.  The biggest baldish spot is a short stripe down the middle of my head.   

More drama:  We took a road trip to Santa Fe for spring break in March, to visit my mom.  It was such a fantastic trip!  But it started out with lots of weather drama that caused some spontaneous re-routing.  I had deep gratitude for my reliable vehicle and my fully charged smartphone on this trip!

Here's the weather drama that tried to thwart our trip:

The eye of that storm is pretty much where we were trying to get to:  Colorado Springs, for a reservation at the kid hotel paradise at the Great Wolf Lodge.  BUT...

Seriously.  I-80 out of Nebraska was closed, I-70 out of Kansas was closed, and all of the highways leading into Colorado springs were closed.

screenshot of Nebraska 511 that evening.  Poor Nebraskans!  And parts of Nebraska and Iowa are still under water from the flooding that this storm caused.  
So, we managed to cancel our Great Wolf Lodge reservation (shoutout to the amazing customer service at Expedia!!  You wouldn't think so, but it's true!), spent an unplanned night in Lincoln, NE, and an unplanned night in Burlington, CO, then proceeded to vacation in southern Colorado (because by then the snow had almost completely melted).  Drama!

Our first vacation item of business was the Royal Gorge.

The family on the complimentary gondola ride across the gorge, approximately 955 feet above the Arkansas River.  Well, included in the somewhat steep cost of admission, so it's not truly complimentary, but you know.

Looking down into the gorge from the gondola.

Ian and Azalea zip lining across the gorge (they're not over the gorge yet in this photo)!  Poor Eleanor wanted to do it, but you have to weigh 100 pounds and be ten years old.  She's not quite either of those things.  

Wednesday, January 30, 2019

Joyful \(*>*)/

Overall, government shutdown notwithstanding, January was an excellent month.  I felt better than I'd felt since May!  You hear that mom, I used the word BETTER!  It was exhilarating to think about others and spend a bit of energy making others happy rather than being so darn self-focused.  My neighbor and friend had a baby (Congratulations, K family!) so I made them some treats and held the baby for an entire afternoon.  Also, the girls and I hosted my friend M, her two daughters, Aunt J, and my MIL for a spa and spaghetti night.  AND I made an escape room activity for my kids and two of their friends.  My friend, A, helped me with it and it was awesome.  The theme was a trip to Paris, and their plane crashed just off the Canary Islands.  While they were stranded on the Canaries, Mt Teide erupted (baking soda and vinegar experiment).  When they finally made it to Paris they visited the Louvre and Champs de Elysees.  They had numerous puzzles to solve along the way.  It took them an hour to complete the "escape room". 

And then...a minor setback!  Last week I either ate something bad or picked up a stomach bug.  Regardless of the cause, the result was mild dehydration, which of course led to dizzy spells.  I've been rocking the BRAT diet to try and get things back in order.  It has been harder than it sounds, likely because of all of the fancy pills I take every day (neratinib, roids, antibiotics, etc.).  And now today I have a sore throat and a cough!  Bummer.  These ordinary ailments have me zapped.  But I'm getting plenty of fluids and rest, so hopefully I'll kick em soon. 

I saw Dr. Radiation Oncologist last week.  He too was delighted with the January MRI of my brain.  Oh, and when I saw Dr. Oncologist earlier this month, she skipped into the exam room and invented a word.  She said that this was the "bestest" news she's had for me all year.  So guys, whole brain radiation worked for me!!  I asked Dr. Radiation Oncologist to explain what is so great about this result.  He said the perfusion (blood flow) to the tumor is significantly decreased, and the diffusion (area of the tumor) is not increased.  Hopefully it stays that way for awhile! 

Today is a polar vortex day!  Feels like -37F outside with the windchill.  Schools are closed and folks are advised to stay indoors.  Ok!   

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!!