Divergent

In my scientist life, I study genes that make bacteria resistant to antibiotics.  I am especially interested in how these genes evolve.  To guess at how they evolved, I draw trees, much like a family tree, except with genes.  When two genes are found to be related, they are often said to have diverged from their common ancestor.  Well, it is false to say that I am evolving, but right now I can't help but see my life as analogous to one of these trees.  The difference is that on my science trees, both branches exist.  On my life tree, the branch I'm on is the only branch that exists, so I guess there's no point lamenting over the pre-cancer branch (a tempting endeavor, I assure you).  Nonetheless, I can't shake the notion of how far my life path has diverged from what it was merely two weeks ago.  I don't feel at all like myself, and yet this is my new self.  Tasks such as walking around the block are difficult, and I can't count on myself to make coherent conversation.  And let's not forget about the port.  I am deeply divergent.   

I need to remember that it won't always be this way.  Hopefully tomorrow will be better.  And in looking past tomorrow, previous divergences have always led to the great life I have now.  Why should a little cancer be any different?       

In other news, huge shout-out to Ashley for the fantastic hair cut today!  She cut it here in the kitchen, and it is adorably short.  I wanted it short before it falls out, in the off chance that it is less traumatic that way.  (Photos of the Cancer Cut are linked at the right.)  Second shout out to Sandra for bringing the scarves that I will rock so hard.  I've already started the count-down for the return of my long hair, but I am grateful for the help to look presentable in the meantime.  Maybe without the ponytail I will look like I have a PhD.    

Turtle

I got up and had breakfast with my ladies this morning.  Every movement made me feel like a 100-year-old sea turtle laboring across the sand.  Time to return to the sea.

Bone cuddle

First of all, vicoDID but vicoWON'T.  It made me nauseous, woozy, cry, and my wound still hurt.  This morning I took extra-strength tylenol, which is my momentary hero.

Although I had trouble falling asleep last night, I had no trouble sleeping.  I was warned that one of the drugs (dexamethasone, given prior to chemo to prevent nausea) would keep me awake, but either it didn't or it hasn't.  I was almost disappointed because I already had the title for the 3 am blog post, but there's always a next time.  

This morning I had to go in for a shot of nulasta (again, I am ignorant of the spelling).  My mind is too fuzzy, so I forgot to ask how it works.  But I know that it's purpose is to help my white-blood-cell-generating cells to recover from yesterday's chemotherapy, and these cells reside in my bone marrow; therefore I have been thinking of this nulasta as a big ol' molecular hug for my bone marrow.  

This begs for a brief chemotherapy lesson, although I am still not going to get up to read from the paper that contains the names of my drugs:


chemo drug 1:  Specific to a receptor on my type of cancer.  Should just go straight to the cancer culprits and somehow take 'em out.  I would like to know more about this on a molecular level so that I can explain it to you.  I will put this on my question list for my AMAZING oncologist.  I have not given her enough props yet, but let the props begin here and never end.  She is a real-life rockstar.  And props to all of the research scientists out there discovering new chemotherapeutics; you too are rockstars.  Anyway, because this drug is brilliantly specific, there are few side effects to my other body parts.  Nice.  This is the drug that will enter my port weekly.  


chemo drugs 2 & 3:  General to all fast-growing cells.  This includes cancer cells (yay!), but also other fast-growing cells in a body, such as hair folicles and blood-cell-generating cells (boo!).  This is why my hair will fall out and why my immune system will waffle between weakened and obliterated (mmmmm...waffles).  These drugs will enter my port once every three weeks, for 6 cycles.  So one dose down, only 5 to go.  Huzzah!


And now my brain is spent, which is probably evident despite my best efforts to hide it.  Fuzzy fuzzy fuzzy.       

Poke tally:

left breast  1

left arm  4

right arm 3

superior vena cava 1

"port"  1
tummy  1    

     

VicoDO or VicoDON'T

Dinner:  lettuce salad with avocado and cucumber with balsamic and olive oil, two pieces of cold pizza, an orange, a glass of milk, a homemade chocolate chip cookie, and water water water.

Activities:  cuddle with Eleanor on the couch, try and fail to play a game with Azalea, watch part of an old-school episode of SNL (hosted by Calista Flockhart with musical guest Ricky Martin, YES), read, discuss books with the lovely Statia, help put jammies on the little nuggets.   

Mood:  I'm told that I am looking and acting better than I was when I got home at 2:30.  That's good.  However, my brain feels fuzzier and my "port" hurts more.  I'm tired, but not sleepy.  I am currently wrestling with whether or not I want to take a vicodin to ease the discomfort, but maybe extra-strength tylenol will suffice?  I'm a tough-it-out sort of girl with few vices:  I took no drugs during childbirth, but I do love a good alcoholic beverage once in awhile, as many of you can attest to (insert favorite hbomb memory here).   

The vicodin awaits, lurking in a white pharmacy bag on the dining room table, preying on my fear of what tomorrow will bring.       

It's alive!

I have a port.  Above my right breast.  I can't wait to show you some day.  It is a quarter-sized, ~1-cm thick plastic do-hicky perched on a rib just under my skin.  In the center is material analgous to artificial cork, and that is where the majority of my chemo-related needle sticks will take place.  You can put stuff in or take stuff out--how versatile!  From it is a long (10 cm?) skinny irrigation-looking tube that goes into my superior vena cava.  The site of the port is moderately sore, but no need for the vicodin yet. 

My life-saving surgeon put in the port, and I totally sobbed uncontrollably when I saw him this morning.  It was ridiculous.  He gave the anethesiologist a knowing look, at which point anxiety drugs were offered.  I declined, explaining that it wasn't the surgery itself that I was upset about, but rather the whole ball of (cancer) wax.  As promised, I pulled myself together and everything went great.  I didn't feel, see, or hear a thing, which is as it should be in my world. 

In the fog of after-surgery I was giving everyone hugs and making playground playdates.  Nice.

He left the needle in the port and I was wheeled right up to oncology.  I had at least three hours of drips, and it all went through my new port.  I still don't have the names memorized, and I'm not going to look them up, but here's a layman's summary of my drips:  30 minutes of anti-nausea, 30 minutes of benadryl + tylenol + dexamethasone (anti-nausea), 60 minutes of chemo 1, 60 minutes of chemo 2, and 30 minutes of chemo 3.  Then my port needle was removed (yowza, that is some FIRM cork in there) and we blustered home in the appropriately dramatic weather.

What to expect:  bone-crushing fatigue for 4-5 days, then hopefully an upswing until I get this treatment again in three weeks.  Lots of other possible side-effects, but I won't belabor those.  We'll just have to see.  

Time to rest and cuddle the ladies.

Poke tally:
left breast  1
left arm  4
right arm 3
superior vena cava 1
"port"  1

A plan for the first quarter

The good news is that my brain, bones, and organs appear to be cancer-free.  The left breast, as suspected, is full of cancer, and so are some neighboring lymph nodes (boo!).  The right breast is questionable (boo again!).  We'll repeat all of the scans before surgical decisions are made.  

I suppose there's no additional bad news other than the cancer itself (which is estrogen receptor negative, progesterone receptor negative, and H-2-new positive [I have no idea how that is really spelled, but that is how I hear it]).  H-2-new positivity is a good thing because there are great drugs against that, apparently.  Unfortunately I was robbed of my time to celebrate the good news by being launched into a lengthy chemotherapy briefing, which was a bit traumatic.  Tomorrow I will have a port put just under my skin on my chest, and that is where my injections will take place.  I don't know about you, but when I heard "port" I thought that there would be this thing in me allowing free passage of fluids and preventing further pokes.  Pop the lid off and we're good to go.  That is not true.  There will be a thing in my chest, under the skin, and it will facilitate the passage of fluids from needle to vein; there will still be a poke.  I think people with a different perspective, such as having frequent pokes related to diabetes, would be thrilled with a port, but I myself am still getting used to the idea.  Call me old-fashioned, but I am already looking forward to the removal of the port.  

So, port at 6:30 am.  Then chemo round one at 10:30.  Chemotherapy will last 18 weeks, plus the continuation of one of the three drugs for a year.  Three drugs once every three weeks, and one of those three drugs every week.  The every-week drug shouldn't be so hard on me, and in fact won't affect hair loss, but the other two sound rather unpleasant, including swift hair loss.  After the chemo, all tests will be repeated and the extent of surgery will be assessed.  Then radiation, but we didn't even talk about that (or surgery, really) today.  There's no way to know how I personally will be affected by the chemotherapy, but I was told that the fatigue is real and Ian already picked up my anti-nausea medication.  I'm sure that you have many unanswered questions, but that's about the best I can do tonight.         

Poke tally:
left breast  1
left arm  3
right arm 3

The gamma-irradiator

This morning I was injected with technitium, a human-made radioactive element situated between molybdenum and ruthenium on the periodic table.  The technitium is attached to phosporus, and now it will incubate in my system for 3 hours.  Like the PET scan, the idea is that the technitium will concentrate in areas of my bones that are over-active, such as cancerous bone cells. 

I also had the idea to tally my pokes.  This game might get old or depressing, but right now it sounds like fun.  What body part do you think will have had the most needle pokes by the time this is all said and done?

Current tally
Left breast:  1
Left arm:  2
Right arm:  3

Radioactive knockers

A PET scan is no big deal, and although I haven't seen the pictures yet I'm confident that the result is pretty cool.   Here's what went down:  I had to fast for 4 hours before the procedure so that my blood sugar was nice and low.  Then I was injected with radioactive fluorine that is attached to glucose (sugar), at which point it was clear that the purpose of the fast was to decrease the background glucose in my system.  I had to rest for 1 hour while the hot sugar (chemically speaking) meandered around my body.  Cancer cells apparently metabolize sugar 19 times faster than regular cells, so the cancer cells should concentrate the radioactivity.  After said hour I laid on a mini conveyor belt and scooted into a tube.  This tube was stubbier and had a more generous opening than the MRI tube, and apparently its job is to scan for the radioactivity in my body.  After only 15 minutes of scooting, it was all done.  I'm pretty excited to see the images, despite the results.  And as the title of this post indicates, I fully expect at least one knocker to be glowing.

Aunt Jacque was here today, and my sister Hilary and her 6-mo-old baby boy are here tonight.  It's been a fun cousin party.  Hopefully we can keep up the atmosphere tomorrow...it really helps!  I'm pretty dang nervous, but my brother Ryan doesn't know what on earth for because tomorrow doesn't change anything.  I suppose he's right, but it's easier for me if I make tomorrow the target of my dread instead of the nebulous hours of cancer fighting.

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. 

Birthday

I have had a wonderful three-day reprieve from my impending medical issues.  I decided to sit in the back seat, so to speak, while others organized the weekend for me.  Ian is my general manager, and my brother is my offensive coordinator (so if you call, he might answer).  Lots of friends and family have stopped by for hugs, which is awesome.  For the record, no you are not bothering me, and yes it helps that you are here/calling/writing/posting.

I was talking to my friend Kendal today about all of the testing and analysis that is going to resume tomorrow.  She was annunciating her incredulity at my cancer and said something to the effect of, any chance they'll take it back?  Maybe say woops, my bad, it's not cancer after all?  Man, I wish that would happen.  I'd be a bit embarrassed for assembling all of you, but I imagine that that would be easier to cure than cancer.

PET scan tomorrow!  

Thirty

My beautiful friend Darci wrote this poem for my thirtieth birthday tomorrow.  I have her permission to share it with you.  




just look at you

strong
smart
beautiful 
and so damn tall

thirty

there it sits
like a period 
marking a new 
breath 

the next breath will show us

how frankly, funnily, 
fightingly, stubbornly, 
scientifically, lovingly
you are going to 

live

In the light

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.   

30 years without bacon and all I got was cancer

I have inflammatory breast cancer.  I have banned myself from googling it, so I don't know that much about it yet, but I'm sure that a year from now I will be an honorary expert.  For now I will learn all of the necessary details from my oncologist (I have an oncologist?), and she won't know specific details about my situation until 3:30 on Tuesday.  That's when she will collate all of the data that has been collected from my body since Tue. Oct. 19, assess the situation, and come up with a treatment plan.  It sounds like at a minimum I will have chemotherapy, surgery, and radiation, in that order <gulp>.

I'm starting this blog to keep my loved ones abreast (he he he) of my health, because it is so hard for me to tell my stories over and over.  I hope it works well for all of us.