Saturday, December 30, 2017

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. (>")>

Tuesday, January 10, 2017


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.