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!!

   

Swell

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.  So...next time!  Thank you for your support, dear ones!  Have a swell weekend!

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!   

Preparing for the demise of Lloyd

Auntie J and family:  Thank you SO much for the bowling gift card!  It was just what we needed today to get our mind off of things.  We haven't been bowling in ages, and we had a ball even though we were all pretty terrible.  It was also special because my mom was here, huzzah!  And she earned a new nickname today:  Gutterball Grandma.  So thanks for that.  ;)

Today the girls treated me to a joyous day.  My youngest in particular, who is an 8-year-old that is all heart, said that she really wanted to do as many fun things with me as possible before I start to feel sick after the SRS treatment.  Sweet little peanut. 

First on the agenda, after I made pancakes and omelettes, was walking downtown to a coffee shop for hot cocoa and chai and coffee.  Today was blessedly warm compared to the deep freeze we've been stuck in, so it felt wonderful to be walking about in the sunshine.  We even stopped at the grocery store parking lot to climb the snow mountains and slide down.  So much joy.

Then we went home, got in the car, and drove to the bowling alley.  I personally wasn't sure about going bowling with the condition that my head is in, but once the girls caught wind of a bowling opportunity they could see no alternative path forward.  It ended up being just fine.  The facility wasn't as crazy-awful busy as we've experienced it before, and they were playing old music instead of modern pounding music (i.e., Van Morrison's "Brown-Eyed Girl", etc.), so I really didn't mind it at all.  Plus, the girls ADORED it.  They each got a spare and danced with joy.  I broke 100 each game, woo hoo!

After that it was time for A's girl scout meeting, so E, my mom, and I folded laundry and did the usual Sunday chores.  Nearing bedtime, I had one more item on my agenda:  make a Lloyd-fighting crown!  My oldest, A, who is 10, was delighted to take charge of this task.  First, she asked to see a picture of Lloyd, and so I showed her the high-resolution contrast pictures of Lloyd that I snapped at my appointment on Friday.  I don't even need to point Lloyd out to you on these ones; he's blatantly obvious. 

This is such a cool picture.  On this picture, my oncologist explained why Lloyd causes headaches.  In addition to the little bit of swelling (dark gray) you can see above Lloyd, the main cause of headaches is the pressure Lloyd puts on the midline of the brain.  There's supposed to be a straight line in the center of the brain, and Lloyd is pushing mine to the right.  That's painful, apparently.  

Then, she sought inspiration for the crown's shape.  Gutterball Grandma suggested wonder woman's crown, so we looked that up and thought it was a terrific template.  Finally, she wanted input on what to write on my crown.  I suggested a phrase from her own life that she might loan to me for tomorrow:  "You're toast!"  It's the name she gives herself when she sets the high score in Slither.io, which is a game she enjoys on her iPad.  Armed with these ideas, she set to work.  I was allowed to help color the letters.  It was so peaceful to end our day coloring a Lloyd-fighting crown together. 

And she's wearing the perfect shirt for today!  "When in doubt, Rule it out!"  It's the t-shirt that my dad made to accompany this blog and to raise IBC awareness!

Look at that tongue!  Such concentration.  :)

On the far right of the crown, perhaps if you zoom in, you can see that she's drawn a slice of my brain, and Lloyd is a blue mass inside of it.  

The back of the crown says, "Goodbye, Lloyd!"  (not shown). 

It's not a contest, I know that, but I really do have the best kids.  I'm so proud of them.  They are doing a great job of being brave and strong and positive.  

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. (>")>

The weekend after

To recap, Friday was a stressful, cancer-scare roller coaster that ended with good news:  the breast MRI showed nothing abnormal in my lungs or chest wall.  The excessive amount of radiation I recieved is to blame for the continued increased metabolic activity in those regions.  Hopefully that activity will fully subside before the next PET scan. 

What does a girl do after a day like Friday?  Rocks the heck out of her weekend.

After I got the results on Friday at 5, it was hard to say whether I felt like curling up on the couch under an afghan or putting on my tall boots and going out.  I opted for tall boots.  Thanks, Ian, for giving me a night off from the kids.

I drove to a bigger city and met my sisters, aunts, and step-mom for a night on the town.  It was fantastic.  Even the drive was therapeutic, both because it was valuable time to decompress and because I got to listen to whatever I wanted to at whatever volume I wanted.  Turns out that I like to feel the bass in my chest, and I hadn't listened to Outkast's Speakerboxx in a really, really long time--the kids aren't big fans.

 
(the only relevant lyrics here are "can you feel that B-A-S-S bass".  Don't try to decipher the rest.)

We went out for dinner and we went dancing.

I slept in on Saturday.

I took the girls to spend the night with their cousin at Aunt Jacque's house on Saturday night.

My dad called to invite Aunt Jacque to a basketball game, but since I was there she decided to pass.  Is it wrong that I scarfed up the ticket and ditched Aunt Jacque?  Yes, it is, but that is what I did.  It's not every day I get a date with my dad.  And oh my goodness did I pick a good game to attend.  We won in triple overtime, against the best team in the conference!

I didn't get to sleep in on Sunday because my ladies never sleep past 7:30, but there's more to life than sleeping in.  We packed a picnic and had lunch at the botanical gardens.  The sun was shining, flowers were blooming, and fishies were ducking the coins that my girls pelted at them.

To cap it all off, my mother-in-law made us homemade pizza tonight.  It was a splendid weekend.  The only part of me that remembers Friday is my shoulders (still a bit tense).  Hopefully yoga tomorrow night will relieve some of that.

You know what's funny?  When I got the crappy PET scan results on Friday morning, my first two thoughts had nothing to do with death or pain.  They were about fatigue and vanity.  I said some version of, "BUT I NEED A VACATION!  I'd better go on a vacation right now so that I don't have to spend my vacation time on being sick again."  Then I said something like, "BUT I HATE MY HAIR AND I DON'T WANT TO HAVE TO GO THROUGH THIS AWFUL GROW-OUT AGAIN!"  Isn't that something?  I surprised myself with my shallow and irrational reactions compared to the very serious possibilities of cancer treatments and aftermaths.  I later apologized to my oncologist to demonstrate that I recognized my misplaced values.  She was very understanding and said that I had a right to be frustrated and irrational.

I continue to be intrigued by my reaction because I feel like I do a good job of simply wanting to live (this weekend is Exhibit A), and yet when confronted with another threat to my longevity the first thing I did was whine about my hair.  It really is a terrible hairdo for me, but it doesn't hold a candle to any of the other cancer side-effects.

Lunch is packed, blog is posted, and now it's time to squeeze in a few minutes of relaxation before visiting the sleep fairy.  I hope you all have a great week!  

2.5

Wish I was sitting down to post some Julie Andrews chirping in the hills.  Instead it's Julie Andrews with her spoonful of sugar to help the medicine go down.

The PET scan was not clean.

The PET scan continued (third scan in a row) to show low-level abnormalities in the left lung.  Dr. O thinks it's residual radiation damage, but unnamed Dr. Radiologist wrote on the report that those are usually gone within 9 months after radiation.  My radiation ended 8 months ago.  Per usual, my result falls into a gray area.

The PET scan also showed low-level abnormalities in my left chest wall.  This too is probably part of the recovery process, but here again the conclusion is that it has had nearly ample time to recover.  This result combined with the above result equals a breast MRI at noon today.  I might get those results today, if a radiologist is available to read the results.  More likely is that I'll get the results on Monday.  I'll let you know in the comments.    

Isn't a "breast" MRI a moderately offensive misnomer to investigate an area from which the breast has been removed?  I suppose "breast" is used generally to refer to the region at large, but it is nonetheless irritating for a person lacking a literal breast.  But I digress...

And finally (no, we're not done yet), the PET scan showed a low-level abnormality in my colon somewhere.  This means I get to have a colonoscopy on February 21st, and I hear that they just do biopsies as needed during the procedure.  Good times.

Hence the 2.5 designation of my ranked outcomes from the previous post.  I should have known that I would get results that fall awkwardly between my expectations.       

Dr. O is not alarmed by any of these things.  She does not expect any dire outcomes, although I don't feel that she sufficiently explained why or why not.  I, on the other hand, am disappointed and of course moderately alarmed.  I have been told before not to be alarmed but then what was the outcome?  Oh, right.  Inflammatory breast cancer.  So I will take a deep breath, and another, and another, and try to slow my 104 beats-per-minute heart.  I certainly don't need that body part to fail me now.    

Asparagus smoothies, anyone?

My T9 vertebral body, which is a bone in my spine, is special.  It is glowing on the PET scan, it is darkened on the MRI scan.  The question seems to be not "if" it's metastatic cancer, but "what kind" of metastatic cancer is it, although Dr. O put it out there that an injury would visualize similarly (if only I were injured!!!!).  She wants to biopsy it to get more information about the receptors on the cells in that area.  She only trusts one person in town to do it, and they are unavailable until the end of the month, so I am to pursue this biopsy with the surgeon in Iowa City on Tuesday.  Apparently you can just jam a needle into the vertebrae and take a sample that way.  Fantastic.  

Some good news is that the breast cancer responded beautifully to the chemotherapy.  Everything that was big is now small.  With the distractions of T9, we didn't even discuss the fate of the healthy right breast, although I'm sure that the existence of T9 cements the fate of the right breast (bye bye, babe).  Additional good news is that metastatic disease had been my biggest fear, so now I'm free to proceed fearlessly.  The bad news is that my chemotherapy regime was designed to counter metastatic disease, so the question remains why it more or less failed.  The bright side of the bad news is that my brain, lungs, and liver are still clear, as cancer there would be the worst possible news.  There are still treatment options that come with today's bad news, although I don't yet know what they are and they will be dependent on the biopsy results.

It's high time I started to help out my oncologist.  She is working hard to make me better, but am I working hard enough?  I'm a vegetarian and I'm active, but I don't eat broccoli EVERY day and I don't exercise EVERY day.  Time to research and adopt an anti-cancer diet and lifestyle.  It's something I can do, and it's important not to feel helpless, although reality certainly seems to be moving in that direction.

The 60th day

Business first by way of an updated poke tally.  I had a bonus port poke and right arm stick with the sinus infection a few weeks ago, and yesterday I had twin left-right arm sticks for the PET scan.  There will be another poke today for the MRI scans and another poke tomorrow to check my platelets (they were dangerously low as of yesterday, but still above the transfusion threshold), but where will the pokes be?  No one knows.

"port"  18

tummy  6

left arm  5

right arm 6

left breast  1

superior vena cava 1

I am slowly climbing out of the chemo fog.  The crumminess lurks, but I can participate in family life in moderation.  I unloaded the dishwasher this morning, and now I am recovering from that exertion.  After a grand sit I will start making lunch, followed by another grand sit.  I need to conserve some energy for my scans this afternoon.  

"Scans" is plural because what was supposed to be just a breast MRI scan is now also a chest scan.  This is because the PET scan did not sufficiently visualize my thoracic spine (fancy words for my back, I think) and so Dr. Oncologist wants more pictures.  I've been told there's nothing to worry about, she just wants a better view.  She is a thorough oncologist, and for that we are grateful.  So let's not worry.

Instead let's ruminate on the fact that today is approximately my 60th day of being sick <insert imaginary balloons and confetti here>.  This is worth celebrating because it means that the worst of the chemotherapy is behind me.  For the record, I can't believe that I have spent 60 days being sick.  It was fast, and also slow.  It was extremely hard, and also painfully simple.  It was a heck of a way to more or less skip winter.

You KNOW I have songs to express my feelings.  There are two.  Click here for the first song, by Norah Jones.  This is the song for the weary yet peaceful me, sitting in a deck chair on a Caribbean beach at dusk.  I close my eyes and breath deeply of the warm salty air.  I feel my children sleeping in a house behind me.  I feel the earth turning beneath me.  I am enveloped in this peace.  

Good try, Norah, but that doesn't quite capture everything I'm feeling right now.  Click here to listen to Carlos Santana's rendition of a different song, a song for the hbomb.  This is the song for the relieved and exuberant me, casting the fatigue and the deck chair into the sea.  The moon is high and I raise my face to it as I passionately dance in the sand.  My untethered hair flies about my face.  Skirt and sand cling to the sweat on my thighs.  I turn the earth with my being. 

That's better.  Thank you, Carlos.        

Frame of my brain

Above is one frame from my brain MRI movie that was taken last Thursday.  It's weird to me that it still looks like me.  I should have smiled or something.   Pretty sweet stuff. 

Prologue

About 2 months before Eleanor was born, my midwife noticed a small firm area in my left breast.  She made an appointment with a surgeon, as a precaution.  I had an ultrasound, and no one reported any abnormalities, but I was told to come back in a month if anything changed.  Well, I got a bit distracted with Eleanor and so I skipped that directive.  However, instead of going away, the area of firmness increased.  It felt to me, to the midwives, to the lactation consultants, to the surgeon like a breastfeeding-related problem, such as a plugged duct.  For months I applied heat or ice, took ibuprofen or lecithin, massaged or expressed, but nothing worked.  In Feb. 2010 I noticed a redness starting to appear.  In to the surgeon I went, and despite my inability to relieve this "breastfeeding" problem I was again sent away.  In May, with more and new redness, I again brought myself to the surgeon.  He touched the lump briefly with two fingers, told me some surgical things he could do to relieve a plugged duct, actually said that it wasn't cancer, and sent me away.  I consulted with the lactation experts again, and they suggested ultrasound therapy to relieve a possible galactocyle.  I tried that twice in July, and it did seem to loosen things up for a few days, but the firmness never went away.

Despite weaning Eleanor this summer, my "breastfeeding" problem got worse and I started to get nervous.  I dumped my surgeon and made an appointment with a different one in August.  My new and wonderful surgeon appropriately puzzled and scowled at my breast.  But he had no history with me, so he told me to give it another month to drain of milk and then see him again.  He patted my leg and promised to help me get to the bottom of this.  That follow-up was ~2 weeks ago, and he decided to get another ultrasound to see if anything had changed to suddenly allow us to see the problem.  That ultrasound was Tue. Oct. 19th.  I actually got to talk to the radiologist, and this conversation made everything clear for me.  Although I had long thought that I could see a difference between the ultrasound of my left and right breast (I must have had 4 ultrasounds on it by now), the radiologist said, "yea, but there's no focal point".  I interpreted this as meaning that although he agreed that my left breast didn't look normal on ultrasound there was no focal point for him to diagnose or tell the surgeon to biopsy.  How long has this been going on?  How long has my breast looked abnormal on ultrasound but without a focal point to diagnose?  And now that I know that it's inflammatory breast cancer, what does THAT look like on ultrasound?  Why weren't other, more appropriate tests used to rule this out?  But I digress...

The radiologist called my surgeon, who decided to do a quick mammogram and see that result.  After the mammogram was my appointment with my surgeon.  He said that there were some calcifications in my left breast according to the mammogram, but he was still puzzling at the problem because there were no clear answers (apparently).  I asked him what we should do.  He said if I was his sister, he would do a biopsy.  So that's what we did.  I directed him to the one spot that I consider to be the focal point because it is near where it all started and it is a tiny bit sore when pushed.  He took out two--pieces?  chunks?  samples?  Four stitches later, he and the nurse told me the tissue looked great, and let's have a follow-up on Thursday to discuss the pathology results.

Now it's Wednesday, and we're all living our normal lives.  At 1:30 my surgeon's nurse calls and says that I have inflammatory breast cancer, get a babysitter, and go with my husband (Ian) to the oncologist's office.  She's super booked, but wait in the waiting room until she can squeeze me in.  We followed those horrifying directions, and eventually spent over an hour with my new oncologist.  She is great.  She explained what we know, which is that I have inflammatory breast cancer, and what we don't know, which is what receptors it has and if it has spread.  She lays out for me the staging that needs to happen to find answers to the things we don't know: brain MRI, breast MRI, bone scan x 2, PET scan, EKG, Echo cardiogram, genetic testing, and lots of blood tests.  Some of these are to determine if the cancer has spread, some are to determine if I'm healthy enough for chemotherapy.  In our daze, Ian and I walk out to the receptionist to begin making the first of seemingly hundreds of appointments.

Thursday.  7:20 am.  My brother arrives with breakfast-making supplies.  My sister arrives and walks me to my first appointment.  My other sister meets us at the hospital.  First stop, blood draw.  Second stop, genetic counselor.  Third stop, MRI.  Fourth stop, second MRI.  (in the middle of my first MRI, some electricians discovered a puddle of water in the MRI electrical room.  We had to stop the scan, but I already had the contrast dye in me, so the technician walked me to the neighboring clinic to finish up in their machine.)  Fifth stop, another blood draw for a test that was requested after I already had the first blood draw.  Intermission:  home for lunch, at which point my dad shows up with fried cheese curds.  Sixth stop, bone density scan.  Seventh stop, EKG and Echo.  End scene.

I had no tests scheduled for Friday, but I have a few more on Monday and Tuesday.  Tuesday is D-day because I meet with the oncologist at 3:30 to summarize the results and come up with a plan.  I have no preliminary results to report because I have met with no one except the technicians, although a radiologist did call the house and told me to feel free to call him if I have any questions.

Um, thanks, unnamed radiologist, but you have no idea.