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!

The masked woman

What a productive day this was against Lloyd!  I started off the day with a high-resolution MRI, which only took about 10 minutes.  The difference between this MRI and my MRI on Friday is that I was in a different machine that can take higher resolution images, down to the nearest 1 millimeter.  Wow!  That's impressive!  The Medical Physicist (let's call him Dr. Phys) needs this level of precision in the images so that he can design the radiation treatment exactly to the dimensions of Lloyd, the metastatic breast cancer tumor so rudely squatting in my brain. 

Later in the day I had to go back to the clinic to build my mask for the SRS treatment.  The purpose of the mask is to hold my head in place very snugly so that I don't move more than 1 millimeter during the SRS treatment.  Do you see the pattern, here?  This 1 millimeter of precision?  That's so that they minimize the damage to the non-Lloyd parts of my brain.  

The mask is made out of very hard plastic.  First, I had to lay down with my head between these blue brackets that were screwed to a board.  Then, they took strips of heated-up plastic and wrapped it around my face, including pushing it down over my eyeballs, all around my nose, and across my upper lip.  The rest of my mouth and chin were perfectly free.  They also had one piece of hot plastic to put around the back of my head, up by where my head is attached to my neck, but the rest of the back of the mask was not molded to my head.  Once they had the pieces in place to their satisfaction, they somehow snapped them into the blue brackets.  So I was penned to the table by my head, which was a bit of a weird feeling.  Fortunately the plastic is white, and a bit meshy, so I could see through it a little bit if I chose to open my eyes (but it was more comfy to keep my eyes closed and transport to somewhere else, I assure you).  

I had to lay perfectly still in the mask for 30 minutes while it cooled.  This was the hardest part because as the mask got harder, it became harder to swallow.  Swallowing while lying down is not very easy anyway, but then when you find that your nose is locked in place it turns out that your head bobs quite a bit when you swallow while lying down!  I then spent a good 15 of my 30 minutes first deciding on whether or not I should just let the drool pour out of the side of my mouth, and second planning for how I should deal with this on treatment day.  Would my mouth water less if I brushed my teeth at a strategic time before treatment, say, an hour before hand?  If I brush my teeth too proximal to treatment then the toothpaste residue will have a strong salivating effect.  I certainly will need to be sure not to eat right before treatment, as I blame proximal luncheon to maskmaking for my swallowing discovery today.  

After the mask cooled, they unbolted me from the brackets then sat me up with the mask around my head.  Whew, it was heavy!  Then they added a box over the entire the mask, which made the situation even heavier.  The purpose of the box is to add what I'll call gridlines for Dr. Phys.  At least, that's my interpretation of how he explained it to me.  The box goes on in a defined orientation and has lines in it that show up in the images, thus allowing Dr. Phys to be oriented in space relative to my head.  I suppose it's like helping him know that my tumor is at the 40 yard line, or 30 yard line, etc., rather than just being a tumor in an unmarked field.  With this box on my head, they laid me back down and bolted me to the blue brackets again.  Then--CT scan!  This was another high-resolution scan of my brain, and the entire mask-making process had conveniently taken place on a CT scanner table, so all they had to do was slide the table in and out of the tube a couple of times to get some shots of my head.  

I asked if I could take some photos, and they didn't mind.  So, without further ado, here's my mask:

Here's my mask, bolted to the table, photo taken from the left side of my body.  My forehead would be on the right, my chin coming out on the left of the photo past the blue bracket.  You can kinda see my nose near the blue brackets there on the upper left of the mask.   

This is looking down on the mask from above.  You can see the nose plate in the darker white, and the meshiness of the majority of the mask.  It's not too bad!  I'll get to keep it after treatment, then you can come check it out anytime.  The laser that you can see vertically in the picture is used to line up the patient for sliding into the CT scanner, which you can't see in the photo but is just north of the mask in the picture.  The black table below the mask slides a whole body into the tube.  Pretty amazing! 

Hopefully you can appreciate that although it's a little bit uncomfy (certainly not a pillow), it's really not that terrible.  Dr. Phys said he's claustrophobic and didn't know if he'd be able to do it!  I just blinked at him a couple of times and said I bet he could if he had a brain tumor.  You do what you gotta do, people!  Just close your eyes and breathe.  You've got this! 

So then while I was putting my snow gear back on to head home, Dr. Phys offered to show me my CT scan.  Clearly I snapped a photo of Lloyd for us.  

Here's a frame of my brain (my nose would be on the top of the circle, the back of my head at the bottom, my ears on the right and left).  Can you spot a slice of Lloyd?  Hint 1:  the black parts are normal; look for Lloyd as an irregularity in the gray parts.  Hint 2:  Lloyd looks spherical by this angle. 

Here I've drawn a yellow arrow to point out Lloyd.  I tried to circle Lloyd but that was less clear, so hopefully you find this to be a favorable notation.  If you can't see Lloyd, I apologize.  My goal is to get a picture of Lloyd from the High-res MRI.  I saw a hint of Lloyd via MRI last Friday, but I was too stunned by the news to snap a picture.  Lloyd looks VERY ugly and irregular by MRI.  

He said that he'll overlay these pictures with the high-res MRI from earlier in the day, to do the math and make the radiation plan.  He said it might take him a little bit longer than usual to make the radiation plan because Lloyd is not a good little sphere; Lloyd is irregularly shaped.  That's because Lloyd grew where he could make room, and clearly my brain didn't yield to his spherical desires!  Related to this, I asked Dr. Phys if Lloyd was tangled in brain tissue or growing more or less independently from the brain tissue.  Happily, his response was that Lloyd is independent, a true squatter.  Surrounded by brain, but not integrated.  This explains why they expect so little brain damage, but it was nonetheless good to hear.  

So, if Dr. Phys gets the math and mapping done, treatment will be on Monday, Jan. 8th, at noon or 4pm.  If Dr. Phys needs another day, it'll be Tuesday, and so on and so forth.  But odds are good that treatment will be early next week.  

Also, I shared with Dr. Phys that the tumor's name is Lloyd, and I needed him to do a good job of targeting Lloyd.  He complimented me for naming him and said that he'll do his very best at targeting Lloyd.  Welcome to the team, Dr. Phys!  

Last item of the day:  I might have realized how I subconsciously arrived at the name of Lloyd!  At the dinner table I was telling the girls about my adventures today, and I showed them the picture of my brain and pointed out Lloyd.  I hadn't shared with them before tonight that I'd named the tumor Lloyd.  My oldest daughter said, "Oh!  Lloyd!  Like the Masked Man in Land of Stories!"  The Land of Stories is a children's chapter book series that we've been reading aloud to the girls for awhile.  We're on book 6, they are very good books and I highly recommend them.  (I've actually only read half of the books because my spouse and I take turns reading, so I'm having faith that the even chapters are as good as the odd ones.)  ;)  Anyway, in a few of the books there is a villian called the Masked Man, and his name is Lloyd.  Spoiler alert:  the Masked Man totally gets defeated, killed in fact.  Sorry about the spoiler for anyone about to go and read the books, but I find it remarkably perfect that my subconscious chose the name of a masked villain for a brain tumor that requires a mask to defeat.  Thanks, Brain!  You're amazing!  Keep up the good work!   

I have no appointments tomorrow so I'm going to try for a somewhat normal day.  It'll probably take most of the day just to get my head out of the cancer clouds.  Wish me luck!  

A tumor, tentatively named Lloyd

Hello, Carnation Nation!  I love you all so much.  I hope that for the past year you have been assuming that no news is good news, because you would have been correct.  I have wanted many times to share some of my highlights of Living with you, but I have not had a strong inclination to sit down and blog, which causes me to not make the time to blog.  (I've been doing a great job of exercising in my free time, including practicing yoga regularly at home in addition to attending a weekly yoga class.  If I'm not blogging, then I'm sure you'd like for me to be taking care of myself in this manner, yes?)  In the coming weeks I will try to recount some of the highlights from the past year to break up the stress that I am about to start sharing with you.

If no news was good news, then you might be thinking that the reason for this blog post can't be exactly good, can it?  You're right, it's not, but I'm going to try to overwhelm you with the positive aspects while discussing the bad news.  I assure you, the positive aspects are plentiful.

The brief backstory:  I have been having headaches for a few months now.  The headaches seem to me to set in on the same days that I receive chemotherapy treatment (which is still Herceptin and pertuzumab (Perjeta), every three weeks, indefinitely) and then slowly go away over the course of a week or two.  They aren't awful headaches; only once did I take something to make them go away, and it worked. I thought I was having some new treatment side effect, or perhaps even sinus inflammation from a cold I fought in early winter, and so I wasn't terribly concerned.

In addition, the treatment-headaches come with a treatment-fever, so that's been a bummer and weird.  No one as yet has an explanation for the fevers.

After 2 cycles of treatment that came with fever and headaches, Dr. Oncologist (Dr. O) said that it was time for some "pictures", meaning body scans.  She was far more worried about the headaches than I was.  I was worried about the fevers, thinking that my port was contaminated with a bacterial infection or something!  (We tested it; it's not.)  I saw her the Friday before Christmas for my normal infusion, and she scheduled the scans for the following week, which has been this week.  I had a PET scan and a heart echo on Wednesday, both of which showed Glorious results:  my heart is perfect, and the PET showed no evidence of abnormalities.  So I marched into my brain MRI this morning with all sorts of confidence, indeed with a bit of confusion as to why I had to proceed with the MRI despite a clean PET scan!  But I'm a good patient and humored Dr. O with the brain MRI.  It's a good thing I did because the brain MRI revealed a 3 cm tumor way down in the center of my brain!  Dammit, PET scans, you've been failing me!!!!

So now we've gotten to the bad news--I have a brain tumor in a location that is REALLY hard to biopsy, so we have to guess what it is and make our treatment plan based on that guess.  Here starts the good news, Carnation Nation:  1) we have a lot of data based upon which we can make a good guess and therefore come up with a terrific treatment plan; 2) you won't even BELIEVE how easy the treatment is going to be, and the side effect outlook is quite promising; 3) the tumor appears to have CLEAR MARGINS; 4) The only problem I'm having so far is headaches!

Let's march through the information in numerical order, shall we?

1) My grape-sized tumor, which I'm calling Lloyd because it makes me laugh, is located near my basal ganglia and thalamus.  If a brain cancer were to initiate on its own in that location, it would be a glioblastoma, and that would be very rare.  Considering my history of metastatic breast cancer (that is, breast cancer cells have previously been found to have spread to my lymph nodes and lungs, both of which are currently cancer-free), the doctors have concluded that it is far more likely that this tumor came from a breast cancer cell that ran away from the breast cancer tumor long ago and set up shop in this cozy little thalamus cafe in my brain (no, you may not have a cup of coffee, Lloyd!!).  It is impossible to know which kind of cancer it is without taking a little piece of it, a biopsy, to analyze its contents.  A biopsy is possible at certain institutions, but it would be very invasive and dangerous, so given my history we are proceeding to treat it as metastatic breast cancer tumor.  In this case, the treatment is RADIATION ONLY!!!  No chemo, no surgery!  Huzzah!!!  Louder!  HUZZAH!!!!

2) I encourage you to be excited with me about this treatment option!  Radiation will have its hardships, but this girl can handle it.  Chemo is the absolute worst, and brain surgery certainly sounds like it could be right up there with chemo.  But radiation?  I'll have a little fatigue, a little hair loss, and hopefully that'll be it!  And check out this radiation technology guys:  I will not be having whole brain radiation, I will be having Stereotactic RadioSurgery, or SRS.  This is not actual surgery; they use the word "surgery" because the radiation is SO precise that it acts like a scalpel, blasting only the tumor and not my valuable brain tissue.  Not only do the data show that this treatment is much more effective than whole brain radiation, but we have nothing to lose by starting with SRS.  We can always do whole brain therapy later.  Go ahead, ask me how many SRS treatments I'll be having.  Have any guesses?  Well, I bet you guessed incorrectly, because I'll only be having one SRS treatment.  Unbelievable!  This is a major score for the H-bomb (that's me, in case you've forgotten) who would really rather save her Paid Time Off for family adventures than use it on pesky cancer treatments.  ;)  BEST NEWS OF ALL:  The SRS treatment is 90-95% effective at killing this kind of brain tumor!  Huzzah huzzah huzzah!!!

3) I have had clear margins before, when Dr. Surgical Oncologist (now retired) removed my inflammatory breast cancer.  Clear margins is what you want when you have a tumor, because that means that when the doctors draw a line around it, whether it's with a scalpel or radiation or whatever, that line will encompass all of the tumor cells and not leave any wisps of cancer behind.  Since I'm not actually having surgery I don't understand how they will actually KNOW that the margins are clear (that is, they won't be able to conduct a pathology analysis), but I'm taking it as good news that the margins APPEAR to be clear.  I'll continue to imagine that they are clear. :)

4) So why on earth have I been getting headaches with treatment and at no other times?  No one has an answer for that, as of yet.  The MRI did show that my brain is inflamed in a rather substantial area surrounding the tumor, so this inflammation is likely causing the headaches.  It's probably a lot of pressure to have a grape-sized tumor and a bunch of immune cells in my air-tight skull.  Perhaps it's not that the chemo causes the headaches but that the chemo causes me to NOTICE the headaches because I'm generally not very busy or active on chemo days.  When I do have a headache, it feels like a dehydration headache, and a little like a sinus headache, and I mostly just ignore it.  Then when I get treatment my head feels like a watermelon being hit by a hammer, or perhaps a ripe watermelon wishing it were getting hit by a hammer to relieve the pressure.  This last chemo treatment, I took Claritin D for 5 days and got through the worst of the headache, pain-free.  I stopped the Claritin D and now have a small niggly headache, and honestly a niggly headache could have been going on for months and I haven't really noticed it.  Pain level 1 on a 0-10 scale, 10 being the worst.  In hindsight, now that I know that I have a condition that should have been causing headaches, I think that I probably have been having a persistent small headache for a few weeks now.  But hindsight is cheating.  :)  Okay, but I still haven't said what I set out to say in point number 4, which is how grateful I am that headaches are my only problem.  Problems associated with issues in this brain location include difficulties swallowing, talking, and with small-motor skills (it's the same part of the brain in which patients with Parkinsons are aflicted).  To the best of my knowledge, I have not been having any of those issues.  Again, a major huzzah goes here!

Side effects of SRS, Short term:  These side effects are ridiculously mild, as I mentioned previously.  Fatigue for a few weeks, and possible hair loss around a band of my head where the radiation will enter my skull.  My top hair should cover it up sufficiently.  These side effects will be manageable thanks to my awesome family, friends, and colleagues who will no doubt help me get plenty of rest (provided I can get out of the Zone for a few hours a day).

Side effects of Lloyd or SRS, Long term:  Alright, these are a bit more bummer-y, but they are rare-ish (I didn't write down percentages in my notes, but as I recall they were each very good numbers, in the neighborhood of 10%) so I'll take it.  The two main potential long-term side effects are as follows:  A) radiation necrosis at the boundary of the tumor.  This means that the radiation could cause tissue damage to the brain cells very near to the edge of the tumor.  Nerve cells are hardy, so this doesn't happen terribly often.  But when it does happen it's bad because your immune cells go in to clean up the dead brain cells and cause an even bigger problem.  They start a chain reaction of damaging further nearby cells, extending the brain killing-spree out farther and farther into healthy brain tissue.  The only way to stop it is to surgically remove the necrotic brain tissue--boo.   B)  The tumor could be invading the basal ganglia.  I'm not sure how this relates to my so-called clear margins, because it seems to me that if I have clear margins then this would not happen, but Dr. Radiation Oncologist (Dr. RO) listed it for me, so I'm listing it for you.  He also said that the basal ganglia is "durable".  I have no idea what on earth that could possibly mean, but it's a terrific word and I'm going to hang onto it.  Its durability is perhaps why the invasion of it by the tumor is rare?  But I would think that this issue would be dependent on the cancer itself?  I have no idea on this one, guys.  I'll try to find out more.

Either A or B would be a bummer in terms of the potential side effects.  Dr. RO said that weird neurological things could develop over the next year if either A or B play out, such as loss of small motor skills and other functions of the basal ganglia.  Obviously that would suck a whole, whole lot, mostly because I still haven't finished the afghan I'm crocheting for my brother's wedding (he married an intelligent, kind, and fun-loving soul [a catch!] in September 2017; I'm just a tad late) so I need small motor skills at the very least until I get that done.  I have my priorities!!!   So we'll keep an eye on possible side effects A and B over the next year, and I'll use my magical healing powers to focus healing thoughts to my durable yet precious basal ganglia and thymus.

Other item:  Today I had to start taking a steroid to reduce the inflammation in my brain, because the inflammation could cause damage, seizures, etc.  I'm taking my old pal, dexamethasone.  Ugh I HATE dexamethasone.  I have to take this twice a day, starting today, until well after the procedure (because the SRS treatment could cause further inflammation). Indeed, this blog post was brought to you by The Zone, the dexamethaZone, plus the discomfort caused by the fact that my daughters wanted to have a slumber party with me and I was squished in between their bony knees and their new body pillows, ha.  ;)  My heart was pounding to a Shakira song that Lloyd was spinning for me to the beat of my heart literally on steroids, so I had to get out of bed and release some nervous energy.  Hopefully after blogging I can overpower The Zone, and Shakira/Lloyd, and get some much-needed rest.   

Other item:  What happens to the tumor after it's killed?  They clearly have no intention to surgically remove it, so what will my body do with it?  Typically this treatment will shrink the tumor by half, and then my body will try its best to break down what's left, calcify it, or turn it into scar tissue.  These are three separate processes that will be going on simultaneously, so Lloyd will be a minimized, calcified scar.  I'm cool with that.

Other item:  One additional question I have for Dr. O, when I next see her, is why this tumor didn't and hasn't shown up on my quarterly PET scans?  I've seen the pictures--it's not there.  And I want to know why.  Related to this point, I will now be having quarterly brain MRIs; that's according to Dr. RO.  The purpose of this is to keep our eye on Lloyd for changes, and to make sure Lloyd doesn't invite any friends to the cafe.

I am to the end of my list, and I still can't imagine sleeping, but at least now that I've got these words out of my system perhaps I should try to read myself to sleep.  I'm starting a new book, which although exciting, doesn't do a good job of beckoning me to bed.  When I'm engaged in a good book I can't WAIT to go to bed.  So I gotta get this book started so that it can help me counter the Zone.  Goodnight, everyone!  Thank you for being a part of my team!  My health and my family greatly benefit from your support, even if it's exclusively virtual.  xoxoxo

Apologies for any typos or errors; this post got rather long, and every time I read through it I find a small edit or correction, so I'm sure that there are more in there.  I think I checked all of the links, but please let me know in the comments if you find one that doesn't work. (>")>

Legacy

My siblings and I would spend the whole summer at the rural library, subsisting on air conditioning and literature.  We would ride our bikes up to main street, park our bikes in the rack, and read book after book in the underused, over-firm stuffed chairs.  When we tired of the Babysitter's Club, we'd turn to the nonfiction section and let loose our imaginations.  The book about the Presidents was one of my favorites.  When opened on the table it was the size of a newspaper, with full-page images of painted portraits of each President, and short descriptions of their presidential terms.  I loved to reconcile the portrait with the term, imagining how Tyler's chin-length up-do contributed to his legacy or lack thereof.  Or how the weight of the Civil War seemed to be captured in the portrait of Lincoln.  I puzzled over the presidents who were nearly or actually assassinated, uncomprehending of the passions that could lead to such extreme violence.

Tonight I listened to President Obama's farewell address, and I couldn't help but think about this book of presidential portraits.  What will his portrait look like in the book?  What will the overview say to my grandchildren?  I imagine him smiling on the last page, his legacy not yet defined, having led with an idealism unmatched by any previous president.  If only Michelle could be painted at his side to complete the portrait of his leadership and grace.

In November I was in DC for work and spent an evening with two dear colleagues on the National Mall.  It was a cool, clear night with a full moon, merely a week after the election.  I had felt confused by the election, both by its outcome and by what it would mean for the future of all citizens and would-be citizens.  I also worried about what it would mean for my job, my healthcare, and my childrens' education.  The Mall, however, lifted me up.  I felt grounded by the monuments that Americans have made to commemorate the truly great people and accomplishments in our history.  We have suffered many low points, as any great nation does, but in the end we celebrate the high points.  We will continue to have high points to celebrate.

Me, on the approach to the Washington monument

The moon and the monument

Me, reaching for the top although I cannot see it.  Always reach for the top although you cannot see it.

The monument reflecting on itself as I reflect on it, by the light of the moon

After our fill of the Washington monument, we made our way through the World War II memorial.  With intention I walked around the pond, placing each foot on the stones around the perimeter.  So much fighting to free the oppressed and to protect democracy.  And a turning point for women, who were essential for the war effort.  

Inscription on the WWII memorial

 Then we walked the steps up to the Lincoln memorial.  The hall was solemn despite the 50-odd tourists who occupied the space.  People arranged photos in hushed voices, not wanting to disturb the meditations of others.  Lincoln, who for all his imperfections held this country together and laid the foundations for freedoms that we are still working to perfect.

What is he trying to say?

 It was getting late, and we had walked a great distance, but I felt that I needed to visit Martin Luther King Jr.  One of my colleagues had never seen his memorial, and it felt wrong to skip it on what by now felt like a pilgrimage to renew our faith in our country.  Dr. King's memorial is my favorite because I find it incredible that his statue is displaced from the mountain of rock behind him despite a chunk of the mountain remaining attached to his back.  The symbolism is overwhelming.  This was my first time beholding it at night.  I hope to always behold it at night.

What would he say now?

The next morning was absolute perfection, and I had discovered that the Iwo Jima memorial was just across the street from my hotel.  An impulse I couldn't ignore beckoned me to the statue that morning, so I skipped breakfast, checked out, and dragged my roller suitcase to the memorial with only 17 minutes before my shuttle was to arrive.  I regret not waking up an hour early so that I could sit with it for awhile.  Perhaps I am biased because my husband was a U.S. Marine, but I was awed by the statue.  It is bigger than I imagined, bigger than it looks in pictures.  It's as tall as my 2-story house, plus the flag.  And the faces of the men at that scale.  Their faces.  My eyes mist over thinking about it.

For their country, even though they might not ever see it again.  

All of these monuments to commemorate freedom from monarchy, freedom from oppression, freedom from slavery, freedom from authoritarianism.  Do we remember our history enough to avoid repeating it?  The monument makers urge us to remember.

In summary, which I say only to trick you into thinking I actually have some way to summarize my thoughts, tonight the President said that, "...presuming a reservoir of goodness in other people is a risk..."  I am ready to go forward and take that risk.

I suppose that this post is ill-placed on a cancer blog, but I guess I had something to say.

grat.i.tude (noun)

She interrupted our dinner conversation and patted my arm,  her big blue eyes boring through me with the little golden rings around the pupils.  "Hey mom!  Mom!"

"What is it, Eleanor?"

"Remember that time when you had cancer?  And you got really sick and almost died?  And anyone else who had your type of cancer died?"

"Yes, Eleanor, I do remember that."

"But you didn't?"

"That's right, I didn't."  I raised my arm to give her a fist bump, her favorite salutation.  She simultaneously cocked her arm for a high five.  So I opened my fist and raised my arm to match her high five, just as she lowered her arm into a fist to match my fist bump.  We all started giggling, and I admitted that I'm pretty much the worst high-fiver ever.  I'm so bad at high-fiving that my brother once gave me lessons to improve my high-fives.  Look at the elbow, he said, not the hand.  My high-fives are better since that time, but clearly there is yet room for improvement.

Ian then told a legendary story about pretend high-five classes that I had to attend, and how he would help me practice so that I could pass my high-five exams.  We all put our hands up over our dinner plates and he performed mock high-five drills, high-fiving Eleanor and my hands in rapid succession.  She could barely hold her hands up, she was laughing so hard.

"Now you, try, mom!"  She wanted to see my high-five prowess as I executed my drills.

I raised my right hand ceremoniously over my right shoulder, licked my lips, and proceeded to methodically hit and occasionally miss her hands.  I arranged my face in mock concentration, furrowing my brow as I pretended to aim for her hands but actually aimed to miss just a bit.

"Mom, you only hit my thumb that time!" she chortled.  "You can't even hit the middle of my hand when you high-five!"  She was now celebrating my terrible high-five abilities, too.  How delightful to share this family inside joke with her.  How marvelous to be silly at dinner while Azalea played the piano with her instructor in the other room.  How fortunate to be full, and to take time to digest over giggles.  How exciting to laugh on an ordinary evening.  An extraordinary evening.  So many extraordinary evenings.

Indefinitely

I was recently invited to write a short essay for the magazine Living Well.  What follows is are the first and last paragraphs of that article.  Please click here to read the rest of the article on the magazine's website.  I am grateful to two friends, S. and D., who were my creative editors for the piece.

My hair is always the first part of my body to know that I have cancer. With each diagnosis, I made arrangements for someone to cut it and give it a cute albeit temporary style before the chemotherapy forced it out of its follicles. The first time I was diagnosed with breast cancer, my sisters’ friend gave me a pixie cut in the kitchen. The second time, I gave my young daughters the scissors and told them to have fun. After each cut, the hair follicles ached as they were bent in new ways, springing up with foreign lightness. It is this feeling on my scalp that affirms that I am not dreaming, that the course cannot be altered, that the reality of cancer is upon me. 

I was diagnosed with stage III inflammatory breast cancer (IBC) four days before my thirtieth birthday. I had felt a firmness in my left breast for 18 months, but since I was breastfeeding my second daughter at the time, various medical professionals told me it was a clogged duct. Or something unknown, but certainly not breast cancer. When the lump persisted after I finished breastfeeding, I found a new surgeon who was willing to perform a biopsy. While he was retrieving the biopsy sample and I was still on the procedure table, he told me that the tissue looked good and there was nothing to worry about. 

Until his nurse called me at work the next day. You have cancer. Go to the clinic. You have an appointment with an oncologist. Wait as long as necessary to speak with her.

Thus began my journey with breast cancer six years ago. My daughters were merely 1 and 3 years old. 

At first I had so many questions that I didn’t know where to begin. What does Her2 positive mean? What is the prognosis for IBC? Why had no one detected the IBC? What is going to happen to me? After chemotherapy started, my brain became too cloudy to hold on to new questions that sprung up in between doctor’s visits, so I started jotting my questions down in a notebook and bringing it to my appointments. 

...

Now I am 2 years past my second mastectomy, and I am NED—no evidence of disease. NED is the closest medical declaration for “cured” that will ever be handed to someone with stage 4 breast cancer. Indefinitely, now, is lovely. Indefinitely stretches out before me, three weeks at a time, as the anti-Her2 drips into my bloodstream and prevents new cancer from emerging. Indefinitely includes chaperoning my daughters’ elementary school field trips, gardening with my husband, hiking with my brother, and traveling around the world to give presentations on microbiology. That which used to scare me now empowers me. Indefinitely.

Do you know how long you will live? Neither do I. There are no data to inform my prognosis. The survival rates are poor for Her2 positive cancers, pretty awful for IBCs, and positively abysmal for stage 4 cancers. But one of my anti-Her2 drugs has only been on the market for a few years, so there are no data on long-term survival rates for patients who have been treated with this drug. I am generating the data with each breath. Because of this, no doctor can project how long I will live. That makes me not so different from most people. And we all have so very much living yet to do.

--excerpted from "Don’t Be Afraid To Be Your Own Advocate" by Heather Allen, published in Living Well Magazine in October 2016.  [I did not give my piece that ugly title!  I had much more creative titles that the editor apparently didn't appreciate.]

To read the full article, please visit my article at Living Well Magazine. 

Be well!

Advocacy overload

The same person who presented me with the opportunity to write an essay for Living Well magazine hooked me up with a few more projects near the end of September.  I gave a live interview at the local NBC studio regarding cancer survivorship and patient advocacy, and I recorded a public service announcement for a local radio station for breast cancer awareness month.  It was all quite a lot of fun!  I can't remember ever being in either a TV or radio studio before, and both were different than I expected.  The TV studio was spacious; the radio studio was closet-like.

TV interview on breast cancer awareness

Video interview on breast cancer awareness recorded at the radio studio

I have copies of the radio PSA clips, but I'm not sure how to post them.  I suppose you'll just have to listen to the radio this month and hope you hear it.  :)