Just thinking

Is it bad to have a crush on one’s oncologist?  Especially if he’s almost a septuagenarian?

Upcoming

Plan for the next few weeks:

Week 1: Triathlon (check!)

Week 2: Vacation
Week 3: Kick cancer's ass

One of these things just doesn't belong here. 

 

It's still surreal that I have cancer.  I feel great, just (barely) beat my best time at the triathlon AND am not completely wrecked.  I don't feel like someone who's sick.  I guess that will come, but for now I'm doing whatever I can to be as mentally and physically fit as possible to start on the Week 3 plan.

Surgery Date

And it's official - I'm not doing the trial.  I'm still working through plans for which Oncologist I will work with, but I have a date for surgery, and it feels good to have that locked down. 

In talking to a friend yesterday as I was stressing my way through this decision, she reminded me that (a) either decision I make will be a good one.  Both options will have really good chances of curing the cancer for good and (b) since there's no real data strongly indicating that doing the trial or not doing the trial is the right choice, going with my intuition is the way to go.  I was worried that I was being illogical, but really it's just doing what I do every day at work - making a call based on a bunch of little bits of information that have sunk into my brain without my even knowing it.  And my track record, at least in software design, is pretty good.  Hopefully that will hold.   

Okay, so upcoming schedule:

· Aug 26-30: Out on vacation (yay!)

· Sept 2: Labor Day

· Sept 3: Surgery

· Sept 4-6: Likely completely offline

· Sept 9-13: Online, hopefully working from home

· Sept 14-End of Sept: Back at work at least part time if not full time

· Early Oct (likely): Start chemo

 

Genetic Test Results

Just came back – and it’s good news: BRAC negative.  Whew!  So that means no additional risk of ovarian cancer for me, and no hysterectomy.  It doesn't change things that much for my female family members from what I can tell- they still have a mom or sister with early-onset breast cancer which means their chances of getting breast cancer are still higher than the regular population, but not as high as if I were BRAC positive. 

 

On a somewhat random note, I talked to a fascinating oncologist yesterday who pointed out that the research that shows that Ashkenazi Jews have a higher rate of breast cancer than others is also flawed because Ashkenazi Jews just happen to be tested more frequently (they tend to be wealthier, more educated, more likely to be doctors). 

 

All that to say this is just a totally random thing, and could happen to anyone.  So, ladies, check your boobies!



And in case you're curious, here's a list of other factors that influence chances of breast cancer, (and interestingly, not a single one applies to me):

• Age (over 50)
• Family History
• Medical History
• Hormonal Influence (i.e. first period before 12, menopause after 55, first child after 30)
• Birth Control Pills (taking them actually doesn't change breast cancer risk, but does lower ovarian cancer risk)
• Hormone replacement therapy
• Obesity
• Physical Activity (lowers risk)
• Alcohol
• Dietary Fat

Decisions, Decisions

So I have to decide soon - do I go with the ispy2 trial, or do I go with the traditional recommended path for kicking this cancer to the curb.  Here's my list of pros and cons thus far; I'm sure there will be a couple more but I need to figure out a plan soon.  Thoughts welcome!

	Traditional	Trial	Winner
Surgeon	Dr. Clarfeld	Dr. Lee	Traditional
Oncologist	Dr. Kovach or Dr. Ellis	Dr. Ellis	?
Radiation Oncologist	Dr. Pelton	Dr. Pelton	Draw
Plastic Surgeon	TBD	TBD	Draw
Do I need radiation?	Maybe	Yes	Traditional, but I kind of want radiation anyway just to be careful
Recommended weeks of Chemo	16 recommended; willing to do 20	20	Draw?
Order of Chemo	AC, then Taxol	Taxol, then AC	Traditional – let’s get the rough part over with
Nipple-sparing surgery	Will try	No	Traditional
Chances of cancer recurrence	10%	10% or less	Trial
Extra biopsy, MRIs as part of trial work	No	Yes	Traditional
Altruism	Some (they would still keep track of my status as part of the trial to compare results against mine)	More	Trial

Getting A Timeline

We met with an Oncologist and a Radiation Oncologist at Overlake yesterday and got a lot of great information.  We’re meeting with an Oncologist at Swedish this afternoon, then a few plastic surgeons, and then we’ll finally be able to make a final call on which team (surgeon/oncologist) we go with and what plan we’re on. 

The Radiation Oncologist was awesome – first of all he pulled up the PET/CT scan and walked us through it on the computer; it was really cool to see from a tech perspective (a 3-D model of my body), but the best part was that there was literally no cancer anywhere except for the one big tumor that we know of.  The little lumps around it didn’t even show up as cancer, which means either that they’re not, but still need to be removed, or that they are but were maybe too small to be picked up by the PET scan?  We only think they’re cancer because the cells they got from the biopsies there seem to match the other big tumor, but there wasn’t proof from the biopsy that they were cancer since they didn’t get a full sample of the little ones.  So the great news is that – if when they do the surgery and test the little lumps they find that they aren’t cancer, and if they don’t find any cancer in my lymphnodes (or at least not in more than 3 of them) then I don’t need radiation!  We’ll find out after surgery, but I’ll at least keep my hopes up.  If I do need radiation, it’ll be 6 weeks of daily visits and will likely make me pretty tired, but still functional.  The radiation oncologist also said that I could possibly have reconstructive surgery before radiation depending on which kind I get, which is backwards from what everyone else has said, but he actually would prefer for have my chest wall separated from my lungs so that there’s less chance of radiating them.  And that sounds like a bonus to me too.

Separately, he gave us a few recommendations for plastic surgeons, and included some color commentary on one of them who is apparently known for being super arrogant and lacking social skills. But as the rad oncologist said, I’ll be asleep when I’m hanging out with him, so I shouldn’t worry about that.  We ended by telling him that we really liked him a lot and hoped we never saw him again J.   Keep your fingers crossed on this one.

Next was the Chemo Oncologist, who laid out the approximate roadmap he’d see for the next year:

• Last week of August: VACATION! J  We’re still waiting on final confirmation of this, but are hoping that we can still go
• 1^st week of Sept: Surgery.  I’d take a week or two off at this time for recovery.
• Late Sept– Late November: 1^st set of Chemo drugs; I’d go in every 2 weeks for 8 weeks total, each time will take about 2.5 hours of infusions.  Each time I’d have to have shots to stimulate my white blood cell count to let us keep going every 2 weeks (boo)
• Late November – Jan: 2^nd set of Chemo drugs; I’d go in every 1 week for 8 weeks total, each time will take about 2.5 hours of infusions
• Late November – Late November 2014: Simultaneously with the second set of Chemo drugs, I’d start going in for an antibody infusion every 3 weeks for a year, each time will take 30 minutes.  However unlike Chemo, this isn’t toxic so I should be able to handle it okay.
• Feb 2013 – Either start radiation, or reconstructive surgery, or both depending on the outcome of the surgery. 
• (Maybe) August 2013: Reconstructive surgery if I don’t do this before radiation.

It’s not a pretty flowchart, but it’s really helpful to know.  And it might change if I go with Swedish instead; I’ll find out more this afternoon.  It’s hard to predict how sick I’ll be with the chemo or radiation; they have a lot of drugs to help with that but given that anesthesia makes me super ill, it’s likely I will have some challenges.  I will definitely lose my hair, and maybe my eyebrows and fingernails – fun! – but they will grow back. 

I will need company during my infusions though; get ready to sign up for sessions of entertaining me J

PET/CT Scan

The PET/CT Scan was actually pretty cool.  I'm sure there's some good science-y way to describe it, but the way I understood it, they basically do a CT scan to get a picture of your overall anatomy and then overlay a PET scan that is looking for glucose uptake on top of it.  Since cancer likes to grow and eat glucose, it shows up as black spots on the PET scan.  (My scan was clear minus the cancer they already know about, so that was great news.)

However, in order to get the best results for the scan, you need to get your heart to not show up so it doesn't cover up any potential cancer near it.  And since your heart is pretty interested in glucose too, in order to, you know, pump, you spend the day before the PET scan eating a protein-only diet.  This is an awesome diet, because it basically broke down into three parts:

1. A selection of full-fat cheeses, with very explicit instructions about not eating diet cheese, as if I would.
2. Meats, poultry, fish
3. Bourbon.  And some other spirits.

I asked about the last one, and apparently lots of people are confused about the definition of protein and ask if they can have a glass of wine.  So they included the set of alcohol that people can drink.  Honestly, I could go with this diet for a while.  The chicken I had at lunch was boring, but I ate salmon that I'd coated with butter and broiled with a side of Brie for dinner, so that was awesome.

Then before the scan started, the nurse came out with a metal box that contained a metal syringe full of radioactive glucose.  Very Star-Trek-like.  She injected it, and I had to lie down and let it percolate for about an hour.  She had strict instructions about not reading or sitting up, just lying down and listening to music.  No NPR, unfortunately.  I did have a lovely selection of musical choices that ranged from meditative to classical to jazz to pop. Apparently the Eagles and "Most Relaxing Classical Music" were the most popular numbers.  Not a single person had ever chosen Clay Aiken.

Then into the scanner for another half hour of laying still, this time with Simon and Garfunkel's greatest hits, a CD I think I haven't listened to since high school.  It brought back some nice memories, and was actually pretty relaxing.

When I was heading out I was reminded that I should stay away from kids for the rest of the day since I was radioactive, and should make sure that pregnant co-workers did not sit in my lap. 

A couple hours later, I got the all clear from the scan and told my manager.  He said I looked like I was glowing.  I thought he meant happy, but he meant radioactive.  I'll go with both - this was definitely the best news I've gotten in the last couple weeks, so I'll take it.

I Love My Friends. And Family. And Co-workers too.

You know who you are.  Thanks for all the texts, calls, nice encouraging words, unbelievably kind offers of help, and funny comments.  Really, I couldn't do it without you.  

I feel like the last week has kicked my normal sense of humor and optimistic outlook on life right out of me.  I can feel it coming back bit by bit, and each time I get new data to process it goes and hides away for a while again, but it's only going to come back with your support.  

So Thanks.

Encouraging Words Here Please

I tried to use CaringBridge, a site that's meant for this sort of thing, to share what's going on.  But I couldn't, it was too offensive to my design aesthetic.  

However, CaringBridge does provide a cool guest book feature where people can come read and put in encouraging words.  So thanks to a suggestion by my friend March, I'm going to hack that by asking you to please come say nice things in the comments section here.  I really need to hear them.  Thanks.

Lists of Things

Well, we’re about a week in and I’ve already learned a lot. 

Tests Thus Far:

• Ultrasound
• Mammogram
• Biopsy
• PET/CT Scan
• Genetic test for the “breast cancer gene”

Things We Know:

• There is one large lump (about 1 inch) and several smaller lumps in my left breast.
• Based on the ultrasound, it doesn’t look like the cancer has spread to my lymph nodes, although that’s not conclusive.
• The biopsy confirmed that the big lump is invasive cancer (I really don’t like the sound of the word “invasive”) and that the little lumps are likely the same thing. 
• Because the science allows pretty decent targeting, the biopsy also showed that the cancer is susceptible to hormones, which is good; it means that we can put me into early menopause for the next 5-10 years and help treat it that way.  It also sucks, because it means I have to go into early menopause.  I’ll add it to the list of indignities.
• The biopsy also showed that 40% of the cancer cells are still replicating, which is high-ish.  It’s supposedly unusual to have it be both susceptible to hormones and replicating so much, but it’s “good” in that chemotherapy only works on replicating cancer, so that’s another thing we’re going to be able to throw at the cancer to fight it. 
• I now have little metal markers in all three sites biopsied in case they need to refer back to where they were.  They look like miniature fishhooks. 
• The PET/CT scan showed no other cancers anywhere else – first unequivocally good news thus far!

Treatment Plan:

• I have to have a full mastectomy, because the tumor is large and the little tumors around it mean all the tissue is potentially dangerous.
• I’m leaning towards a double mastectomy, just to prevent myself from having to go through this ever again.  And because really, going through life with one boob does not sound appealing.
• I have a couple meetings scheduled with radiologists and oncologists next week.  Still TBD on radiation and chemo, but I’m very likely to have to do both.  Apparently normal radiation is about 6 weeks of daily weekday sessions.  Chemo can range from a couple months to six months or so depending on the different drugs. 
• Chemo may be before or after the surgery.  Radiation will be last.
• One of the oncologists I’m talking to is running a trial at Swedish, so I’d have to do more tests but get even more targeted chemo if I qualify. 
• Depending on the genetic test results, they may recommend a hysterectomy.  A positive result puts me at risk for ovarian cancer, which they’re really bad at detecting, so they recommend removing your ovaries preventatively.  But no results yet, so we’ll see.
• And reconstructive surgery comes last, at least 6 months after radiation. 

List of Indignities:

• Having to quit nursing Leia because I was radioactive after the PET scan, and shortly will have no breasts to nurse her with.  Even though she’s two, and I’d planned to wean her, I really would have liked to do it on my terms.
• Not being able to hold my kids the night after the PET scan, also due to radioactivity.  
• Having to be put into early menopause, or possibly have a hysterectomy.  I’m so not excited about this one.
• Having no nipples.  For some reason that’s hit the highest mark on my creep-o-meter.  Although apparently they will remake them during reconstructive surgery.  And tattoo them so they’re the right color.  I wonder if you get a color consultant, or they have a palette you can select from? 

Okay, enough about that.  Next entry will be funnier, I promise. 

Some warnings; perhaps this should have been entry #1

I feel the need to add some legalese, or at least some warnings about what might show up here.

This blog will be unfiltered.  Those who know me (ideally all of you reading this, because otherwise why are you here?) know that my filters are pretty weak to begin with.  My guess is I'm not going to be holding back.  If that makes you uncomfortable, I'm sorry.  I am writing this for me, more than anything, and I'm not really constitutionally capable of holding back.  That means:

1. There will likely be swear words (see: title of said blog).  My kids are too young to read and my grandmother doesn't speak English all that well.  Hopefully that takes care of the folks whom that will offend.
2. I will mention anatomical parts of me that are being removed.  Probably regularly.  If you don't want to hear about breasts, proceed with caution.  
3. I will try to be witty.  After all, that's who I am, or aspire to be.  If you don't want to laugh at cancer with me, no hurt feelings.  I'll probably send out emails with the pertinent details to folks who care but don't want to wade through the rest of this, so just let me know if you want to be on the list.  

I'm sure I'll come up with more.  Stay tuned.  

First Entry

So I have cancer.  Well, that sucks.