Ru g_____/

I'd almost forgotten how this all works; the outpouring of love and support began days ago, and I just now remembered my mechanism of delivering thanks! Here, in italics before my posts, I will write brief notes of thanks to people who have shared their generosity and time with my family.  I don't use first names, just the first letter of your name (or other anonymous identifiers like "dad") and maybe a little indication of how I know you if I'm concerned about ambiguity.  If you sent something and never see a thank you here, do reach out to me because it's possible that we missed it and I don't want to miss a thing!  I acknowledge that this is not as good of etiquette as an actual thank-you note, but this is what I can manage in my life right now, and it seemed to work before.  <3

Dad and B:  Thank you so much for the delicious pies and for the nice visit, pops (you may have beat me in cribbage this time, but next time you're going down!!).  I love you so, so much.  BTW, Dr. O asked about you, dad.  She said she's looking forward to seeing you SOON (surely she has an agenda; I don't know what it is, but she specifically asked for YOU).  I'll see her next Friday at 4:30; would love to have you along if you have time.  

M:  Thank you so much for the key lime pie!  It's the best I've ever had, even better than the drunken ones my friends and I would bake in college at 1 am (yes, we did that.  Love you, college friends!).

A:  Thank you so much for the coloring book and Legos and beverages.  You are so thoughtful to think of my daughters.  I treasure my time with them, and with you, and it was even better that you stopped by to share the joy with us.  

N from college:  Thank you so much for the YOU GOT THIS socks!  And the box they came in has family photos printed in it!  Did you know that?  Both the socks and the box are so unbelievably awesome.  I am saving the socks to wear to my SRS treatment on Monday, because I need to be reminded that I've got this.  Thank you, friend!

N from work:  Thank you so much for the banana bread!  It was gone within 24 hrs.  It has been most enjoyable to watch your cooking and baking skills grow, and I am now grateful to reap the benefits! 

C from my work, and some of my spouse's co-workers:  It was so very thoughtful of you to send flowers!  They are all so beautiful.  The girls each asked to take a bouquet upstairs to their bedrooms, so our whole house is fragrant and vibrant, which is just what we need right now.  Thank you for your generosity! 

MIL:  Thank you for taking care of my girls when the spouse and I go to appointments.  And for feeding them, and us, with your nourishing food.  I love you when I'm not dealing with this shit, but when I am dealing with this shit the love transcends to such a depth of gratitude that I can't hardly handle it.  You are invaluable to the peaceful survival of my family, and knowing that they will survive is an essential element of my hope and recovery!!!!  I hate bringing this turmoil upon them!!!

Alright, guys.  Shit got real yesterday.  I met with Dr. Oncologist, my primary oncologist who has been with me since my original inflammatory breast cancer (IBC) diagnosis over 7 years ago. This was my first time seeing her since I received the results of my brain MRI because she was out of the office that day.  She answered all of my questions and gave me some additional answers, one of which I'd prefer if I still didn't know.

I don't think I'll be able to write anything else unless I dispense with the bad news, because it's just knawing on me.  Please note that my choice to blog about it is for me, not for you; I'd prefer not to share this with you, but it's gotta come out.  I hate knowing my official prognosis, because it's never been good (IBC only has a 50% 5-year survival rate--I've BEAT THAT!!  Huzzah huzzah huzzah!!!  This is so important to remember and celebrate!!!), so if I avoid the hard data it's easier for me to live without watching my clock of time tick away.  I have no intention of changing that attitude, but to do so the following information needs to be deleted from my brain:  Dr. O said that usually patients in "this situation" live another "12-24 months".  She did not elaborate on what precisely is meant by "this situation" (that is, is it the size or location of my particular tumor, or just the tumor itself?  Not that it matters), but clearly what is meant by "this situation" is some form of metastatic breast cancer in the brain.  I voiced my confusion, because Dr. Radiation Oncologist had played up the optimism of the efficacy of SRS treatment (90-95% effective).  She said yes but there will likely be other tumors and eventually many patients decide that they are tired of the treatments and then choose palliative care.  Okay, I'm reaaaaaalllllly far from that, guys, so hopefully my outward health will help me to live somewhat normally for quite some time.  Long story short, though, is that this is the beginning of a tumor-in-the-brain journey.  Hopefully it's nice and long!!!!

My spouse asked a question about why we're in this situation?  Why was Lloyd not on the PET scans, etc.?  She brushed it away with a disappointing but psychologically helpful answer: "This had to happen".  Apparently this is just what happens with people like me who had metastatic HER2 positive cancer and have been on anti-HER2 treatment.  The anti-HER2 treatments (the Herceptin and Perjeta that I've been taking every 3 weeks for 4 years) don't cross the blood-brain barrier, so the brain is the only unprotected place in the body.  So, tumors in the brain are precisely what happens.  Am I glad I didn't know that before?  AbsoF&*^inglutely, because I would have been fearing it, and fear is the greatest enemy to life.  (I have several musings about fear, and these are some potentially good ones here and here and here.)  But, the scientist in me wishes I had been aware, because I would have been paying far more attention to my brain function and possibly could have called for a brain MRI months ago, before Lloyd got so big and painful!  [The ignorance is my own fault, but I don't like to too deeply research my condition because the stats are so depressing.  I rely on others [my siblings, anyone else] to do the research and decide what needs to be disclosed to me.]  Doesn't matter.  Point is, this is exactly where I'm expected to be, given my medical history.  All there is to do is deal with it, and that's where I excel!  Give me a hoop, and I will jump through it!!  I'm a finisher, so I'm gonna finish Lloyd on Monday, and then the next cancer task, and the next one, for as long as I can.

Now that I've brought you down, please allow me to try and lift you up again. My HER2 cancer expert at the prestigious University hospital down the road told me that the key to surviving this crap is to survive long enough until the next drug is available.  There's still no cure, but new treatments are quickly becoming available.  Good news:  CARNATION NATION, we DID JUST THAT!!!  We survived until the next treatment is available!!  The new drug is called neratinib and it just completed clinical trials.  It has only been available for about 6 months!  It is approved for extended adjuvant therapy (that's me--"extended adjuvant therapy" means "years of anti-HER2 [or other specific cancer] treatment"), it targets HER2, and it CROSSES THE BLOOD BRAIN BARRIER.  Also--it is ORAL!  So, not only do I get to be one of the first patients using a new drug specifically designed to fight HER2 cancers in the brain, I get to take it by pill form instead of my tri-weekly chemo infusions!  How amazing is that?!?!

That's right, I get to stop using the Herceptin and Perjeta.  They have done a fantastic job of controlling the metastatic cancer in my lungs (it's completely gone!), and I remain infinitely grateful to their existence, my access to them, and my insurance coverage.  The reason I can stop taking them is because the neratinib will do the job that they aren't doing; the neratinib will actually do the WHOLE body, including my brain that has been elusive to the Herceptin and Perjeta.  So, if like me you are nervous about stopping the Herceptin and Perjeta that have worked so well, we must remind ourselves that the game has changed and our new perspective is that yes they worked well for the previous problem, but they do not work at ALL for the current problem.  We must focus on the current problem, for obvious reasons.

The two most important dots to connect in this post are "12-24 months" and "neratinib".  The existence of neratinib, and my access to it, will hopefully revise the "12-24 months" prognosis in ways that cannot be predicted.  Please join me on my crusade to delete "12-24 months" from my mind and remind me of the hope afforded by neratinib.  In addition, I was previously diagnosed with those dreaded lung metastases, which many of us feared would have killed me long ago, but I started the then-new Perjeta and look where it got me.  Hope and faith, people.  Hope and faith. 

I think my last piece of news is that I'm now playing side-effect roulette again.  This won't be as bad as chemo, but might prove to be interesting.  I told Dr. O that I still have a headache even after being on the dexamethasone steroid for a week, and my high-res MRI showed that I still have brain swelling, so Dr. O is upping my dose of the 'roids.  Instead of 8 mgs per day, I'm now to take 24 mgs per day.  Whelp.  Sleeping was nice, lol.  The 'roids are important because the brain swelling needs to go DOWN.  Brain swelling puts me at risk for seizures, and she said I probably shouldn't be driving (but I've been driving for weeks!  doh).  Also, the SRS treatment will injure my brain and cause more swelling, so it's important to get it under control before the treatment on Monday.  Okay, so more 'roids, which has caused an influx of prescription medicine into my house to counter the side-effects of the 'roids.  High-level roids such as these often cause fungal infections in the mouth and vagina, so I have an anti-fungal mouthwash to do 4 times per day to prevent an itchy mouth infection, and a pill to pop should a yeast infection arise.  High-level 'roids also tear up your guts, so I'm on some stomach acid-controlling pill.  Finally, 'roids reduce your immune response, so I'm on an antiviral to prevent cold sores that tend to flare up when one's immune system goes down.   (No visitors who are or could be sick, please.)  The side effects of most of these new drugs say, "headache and dizziness".  My poor brain!  What a hot mess it's gonna start to be.   But it's important to remember that I remain grateful for these medical resources to keep my body in action while it is dealing with the important job of eliminating a brain tumor. 

I almost forgot the most important thing I learned yesterday:  the SRS treatment will take place at 4pm on Monday, huzzah!  Thank you in advance for your powerful anti-Lloyd and brain-safety vibes that you might send my way at that time!!  I'll probably work in the morning, not because I'll feel like it but because I should save my paid time off.  I would work from home, but the new leadership in my job has put a cap on the number of hours that employees can work from home.  What new inane inconveniences will they think up next? 

I've been letting the kids play video games while I blog, but I probably should switch into dinner-making mode.  As always, thank you for your support!