Pearl Jr.'s birthday has been scheduled!!

What a day!  My heart is so full from all of the great things that went on today.  First of all, it was my daughters' last day of school.  From left to right, last day of 5th and 4th grade.  And it was a beautiful day to walk to school, which was fortunate because we've had rain and storms alllll week.  So grateful to walk on this last day of elementary school for my now-middle-schooler, just like we did on the first day of kindergarten so many years ago.  We have walked every day that the weather has permitted us to do so!  0.7 miles.  My marvelous neighbor, M, and I are a walking school bus! 

It was school spirit day, so they painted their faces with the school colors.  Thor the dog has excellent school spirit--black fur with orange leash.   

Secondly, when I got back to the house after the walk, my phone started ringing, and for once it wasn't a robo-call!  It was Dr. Deep-Seated Tumor Neurosurgeon, personally calling me to chat about things!  WOW!  I was very impressed that he would take the time to do this.  Usually the nurses call, sometimes the schedulers but usually the nurses make the call, answer my questions, then transfer me to the schedulers.  This was Dr. D-STN  himself!  He called to say that the tumor board agrees that surgical removal of the tumor is my best option at this point.  He confirmed that a little bit of Lloyd will remain in there, and that Dr. Radiation Oncologist has a plan to blast it with a CyberKnife (I don't know anything about this yet, and google is yielding too many answers at this moment so I'll wait until I've had a chance to ask my questions then blog it up).  He also told me a bit more about the surgery:  He'll just make a small incision in my right eyebrow: eyebrow craniotomy is what it's called.  That's it!  So I haven't read this yet, but here's what I think is a reputable a link from Johns Hopkins to information about the eyebrow craniotomy procedure.  I don't plan to read it until after the procedure.  Dr. D-STN said that the main side effects include black eye, possible eye swelling, and possible eyebrow disability for 3 months.  Most patients recover full range of eyebrow mobility by that time, which is heartening because my right eyebrow is the one with enhanced abilities!  It's the one I can raise by itself!  Eyebrow joking aside, guess how long my anticipated hospital stay is....?  You'll never guess.  Two days!  He said I'll be up and walking the SAME DAY, and in the hospital a mere 2 days, (he mostly said two days, but the range he eventually gave was 2-5 days.  He said if my eye swells shut I won't be discharged until it opens.  And I seem to be a super sweller!  So we'll see.  Also, if I experience any of that left-side paralysis business that would extend my stay as well, into some sort of inpatient physical therapy.)  The picture he painted very much put me at ease.  Of course it's a big deal, but this sounds super manageable!!  

I think I'm going to refrain from putting the surgery date on the blog, because everyone wants to be soooo helpful but sometimes we are overwhelmed by the outpouring from Carnation Nation!  My goal by keeping the date private is to allow my kids the space to deal with all of this as they will, with the people they are closest to, without me inadvertently creating a circus while I'm in the hospital.  You can expect that the deed will be done by the close of June, and if you need to know the date you will be communicated the date.  When I come out the other side with my wits about me, one of the first things I'm gonna want to do is blog it up!  Because that's the way I roll. 

In regards to CAR-T, I finally got through the new patient hotline, and someone emailed me instead of calling, which was very nice.  Also, I discussed this CAR-T Her2+ brain metastasis clinical trial opportunity with Dr. Oncologist, and she wasn't too excited about it.  She said that the side effects of CAR-T can be pretty nasty.  I read about them, and I thought that they didn't sound too bad compared to dying of metastatic breast cancer.  BUT her main point is that I don't have cancer anywhere else, just the one brain met, so if we can get it under control with surgery and follow-up radiation, that's still my best option.  Plus, the CAR-T Her2+ trial is phase 1, so that is not very far along.  Phase 1 trials are toxicity trials.  SO, CAR-T Her2+ brain met trial is not on the table for hbomb at this point in time.  And that's fine with me!  The location of the trial is in California at the City of Hope medical center. So that would have been another issue, too.  One less thing to stress about!!

Thirdly, summer vacation #1 will commence very soon, and will occur before Pearl Jr.'s birthday/Lloyd's death day.  We're coming for you, brother!  

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!!

   

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 https://discoverysedge.mayo.edu/2018/07/11/improving-access-to-deep-seated-brain-tumors/  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!   

Activities

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.  https://discoverysedge.mayo.edu/2018/07/11/improving-access-to-deep-seated-brain-tumors/  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!  

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.  http://rogerwilliamsart.com/  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