Cancer Perks

• When people post a photo of you with no hair (or a cute hat) on Facebook, you get a crazy number of "likes" 
• Sometimes people notice you're feeling unwell while waiting in line and insist on paying for your shopping (seriously, just happened to me today, a very sweet retired nurse whose husband is going through chemo too)
• You get to go to "cancer makeup class", get a bunch of fancy makeup you'd never buy yourself, and meet some other awesome women
• People give you special brownies, and show up at your door with scarves, chocolate, and wonder-woman underwear
• You get to spend lots of quality time catching up with your friends during chemo sessions; way easier than scheduling coffee dates with everyone
• A sore tongue (yes unfortunately it's back, although not as bad as before) gives you a guilt-free excuse to eat ice cream

No news is good news!

Nothing very exciting to report from this week's chemo appointment - no allergies (yay!), lovely company, really nice nurses as always.  The only annoyance was another loooooong appointment.  However, given that we got several dirty looks from people in various waiting rooms who seemed to be grumpy that we were having a fun time, and got to overhear multiple people complaining about how long they were waiting, and that the snow didn't start so our commute home was pretty brief, I can't complain.  

My friend Laura was with me and got to meet Dr. Kaplan, so she's now convinced that between my crush on him and Chris Hadfield, I have a thing for eloquent nerds.  She's probably right.  

Hoping for a better week with fewer cold symptoms and hopefully few chemo side-effects.  Wish me luck!

For Those Who Were Curious...

No allergic reaction to the Taxol thus far, but I've had a brutal cold all week that's been keeping me in bed watching Gilmore Girls reruns.  The kind of cold that, a few months ago, I would have completely ignored and now is kicking my ass.  Have I mentioned that I am pretty much all done with this chemo thing yet?  11 weeks and counting...

Short Interlude

This chemo thing is so weird.  

I keep thinking I’ll get more data as I go further through this, and then I’ll be more prepared and know what to expect, except every time is so different.  

This past session of AC I was just wrecked.  As in, it felt like a semi-truck rolled into me and kept right on going.  It’s not like it should be that surprising; but for someone who’s used to arranging multiple activities per day on the weekend because the kids and I really like to be out and about, it’s disconcerting to be able to manage about 30 minutes of playtime before needing want to go back to bed.  

However, I'm now officially DONE with AC!  And today (right now as I write this) I'm starting my new round of chemo, a drug called Taxol.  I'm here for a long time today because they're pumping me full of steroids and benadryl in case I get an allergic reaction and I get my first dose of herceptin too (also known as Trastuzumab, which sounds like a Romanian Vampire name to me, I love it).  I'm hoping that after the first couple treatments (12 in all, once per week) I'll have a better guess as to how I'll feel throughout, although of course given my AC experience you never know.

In the meantime, I brought my copy of Girls of Atomic City, which I'm reading for bookclub, along with me today, and had a long conversation with Dr. Kaplan about WWII.  I also learned that he served during the Vietnam War by working with a bunch of crazy smart cancer researchers here in the US.  They were told to go buy some uniforms at the store and when they found out they cost $300 they came back told their commander that he could buy them for them himself!  He said he didn't care so they spent the entire war doing research in their jeans.  And he says he's the only one who went on to actually practice medicine; everyone else he served with is running impressive medical research clinics all around the country.  I can say I'm officially glad he's decided to practice; this whole thing is much more feasible with good friends and good doctors to help me through.

That's it for today; hopefully I'll try to post this week and let folks know how Taxol is going.  Hope you all enjoyed your Thanksgiving and Channukah celebrations!

Soap Opera Style

Oops - this one never got posted; it's from a couple weeks ago so please read with that in mind!

___________________

I’ve told a few people this story but thought it was amusing (and short!) enough to write down.  While I was in the hospital we figured out that one medication, Lorazepam, that I’d been taking at night to help me sleep also helps a lot with my nausea, so I ended up taking it during the day last time the week after chemo, and will again this week.  However, while I knew that it was useful for anxiety, sleeplessness, and also nausea, I didn’t know that it could also give you mild amnesia. 

So I happily took it, thrilled that the combo of my reduced chemo dose plus the Lorazepam helped me feel better.  I also went to work, and sat through 4 hours of storyboard reviews on Wed and again on Thurs.  It turns out that this was an ineffective combination. 

On Monday I went back to work and started talking to people on my team about the storyboard reviews, but I quickly realized that I remembered the room we were sitting in, and remembered starting a question and having no idea where to go from there, but I couldn’t remember anything else we’d discussed AT ALL. 

My friend Alyssum pointed out that I was now completely ready to join the storyline of a Soap Opera with my handy amnesia – all I need is an evil twin, or a daughter I didn’t know I had, or to marry my husband’s brother by mistake.  I’m looking forward to figuring out what I forget this next week.  Please keep me posted!

Chemo Blues

When I try to describe myself during somewhat annoying personality-quiz like management training classes, “happy” always makes the list.  It might be accompanied by words like witty, snarky, smart, impatient, effervescent, etc., but happy is always there.  Which is a bit of a problem these days because it means that I don’t really have the equipment to deal with depression. 

 

One of the less fun side-effects of chemo, aside from raging mouth sores which are thankfully not making a prominent recurrence at the moment, is what I call the “chemo blues”.  It’s not a deep depression, but it’s just a level of gloom that permeates everything from about the Wed-Sun after each treatment.  Given how things are going in my life, and in all my friends’ lives, there is reason to be bummed out, but this is something that feels unnatural.  Half my brain is busy being very sad at everything, and very emotional, while the other half of my brain is busy being disdainful of the first half, saying things like, “God you are boring as fuck!”. 

 

Then I magically get better, sometime on Sunday afternoon.  And all of a sudden the next chemo dose seems completely manageable and life, while rocky, seems hopeful again.  It’s surreal.  I’m guessing it’s also how many people feel all the time. 

 

Today’s my last dose of AC chemo before I move onto the easier Taxol.  Hopefully this will be my last week of firsthand experience with the Chemo Blues.  But I hope I can remember this the next time I’m talking to someone who’s feeling down, and have more empathy for what they’re going through.  I can’t fix it, but at least I can understand. 

Randomized Ice Cream Trial

My Doctor has placed me on a randomized trial today - will I spend my chemo session sucking on ice cubes, or downing Tillamook chocolate ice cream?  Only time will tell.

Let's back up for a second - last week was great; I felt strong and healthy almost all week, except for the time when I thought it would be a good idea to go for a long walk with Ethan, and then even though I was really tired and wanted to call Jeff to pick us up half-way through, I decided that I could "push through it".  Turns out you can't "push through it" with chemo side effects.  Also the fact that we got lost in the woods near our house on the way home and were trailblazing probably didn't help.  But otherwise, last week was good.  I was able to be at work most of the week and catch up on things, I played with the kids, and I was able to eat acidic foods without wanting to curl into a ball. 

So today I'm at Swedish waiting for my next chemo dose.  We're going to lower my dosage by 15% in the hopes that that prevents some of the side effects while still being effective, but I'd also heard about people sucking on ice chips during chemo to help prevent mucositis (by the way, do not do a Bing search of that because the images that come up in the main search results are really horrifying) which sounded like magic mumbo-jumbo but I thought I might as well talk to my doctor about it. 

(Geeky aside: A friend had mentioned that he'd heard about an application of this to prevent hair loss, where you could basically ice your head to keep from losing your hair.  I was imagining a Jetson-like hair salon with big hoods with pumping cooling fluid.  Turns out that people usually use dry ice, although Dr. Kaplan did a study with a pharmaceutical company that was making special helmets you could pump through but (a) it doesn't really seem to work except possibly in cases where people were getting chemo drugs that only sometimes make you lose your hair (not applicable for me) and (b) Dr. Kaplan is not psyched about it anyway because it prevents chemo from going to the outside of your head, which means that it's not fighting any cancer there.  Note that breast cancer can move to your skin, but doesn't move to your mouth.   Either way, I am kind of a fan of my bad-ass bald look so I would be skipping that regardless.)

It turns out that, if this ice thing works, it works by constricting the blood vessels in your mouth so that you don't end up with as much chemo getting absorbed.  That actually makes sense, but they don't have any hard data on how effective it is; hence the planned randomized ice cream trial, because at least then there would be the positive side effect of ice cream.

....And Home!

Just a quick update that I'm back at home and thrilled to be here.  As much as I am grateful for the care and medicine I received at the hospital (and I am grateful; I clearly really, really needed it) it is much better to be home.  I'm not 100% yet or anything, but Percocet is keeping my mouth pain in check for the most part, and seeing the kids again has been awesome.  Here's hoping we can avoid a repeat!

Today's News

Plans have been slightly revised today - we're going to take another week off from chemo to let my white blood cell count go up, and to let my mouth finish healing. 

I was initially worried about what that meant for my overall chances of fighting cancer, but Dr. Kaplan took the time to explain to me (one of many reasons I love him) that the research shows that the important part is that we do the 12 weekly doses of Taxol.  For the 4 bi-weekly doses of A/C that  I'm doing now, there's only one larger study that shows a very small improvement in doing it bi-weekly vs. every three weeks.  Either way, as he said, if I try to do A/C again on Monday I will just end up back in the hospital.  And much as I'm enjoying my room with a view and the lovely nurses, I'd like to avoid being here another month. 

In other news, I woke up hungry for the first time in a few days today and ate some breakfast without feeling nauseous.  And with the fog outside and my stack of books and cup of tea, it actually feels quite cozy. 

Good News

I'm choosing to look at this as good news - I'm in the hospital now as of Monday night and will probably be here for the rest of the week. 

As you may have noticed in my past couple posts, I was feeling pretty out of control.  The whole "cancer and control freaks don't mix" had never been more apparent.  After my first dose of chemo, it was hard, but by week two I was feeling better and was able to play with the kids, take them to the symphony, and work full time.  I felt normal.  So I expected the same pattern: week1 - suck; week 2- ok. 

Instead, the sores on my mouth were so painful by Monday that I could barely eat.   I was way more tired than I had been during my "off week" before, whether from not sleeping well, or just managing constant pain.  I'd been prescribed 6 different mouthwashes, none of which seemed to do anything, many of which were supposed to help immediately but would work for 10 minutes at best, and others which were supposed to help long term but I didn't think I could make it much longer.  Finally Monday morning I talked to my oncologist and he prescribed YAMW (yet another mouthwash) and told me to take some of my leftover Vicodin from surgery.  I hate taking narcotics, but I was desperate to have anything that could take the edge off the pain.  So I got home and ran around the house frantically but couldn't find it.  Yikes.  My mother in law found me crying but I wouldn't let her interrupt Jeff because he was on an important phone call in his office - luckily he opened the door so she was able to ask him and he found some for me.  Okay.  Except that I took it, and not only did it make just the tiniest dent in the pain, it also started making me sick.  So by Monday night I was throwing up, getting chills, and oh yeah, still in unbearable pain. 

In my head, I felt my choices were 17 more weeks of this OR having my chemo drugs toned down and then ending up getting cancer again because we wouldn't be "curing" me.
And this is when getting admitted to the ER at 2am is a good thing.  We drove to Swedish, it turns out I had a fever (from an unidentified infection; we chemo patients are susceptible to that sort of thing) and a really really low white blood cell count (i.e. no immune system).  But it also turns out that morphine + Tylenol through an IV can work wonders on pain. 

And so two days later, I'm still here and feeling a lot more under control.  My mouth sores aren't gone, but they are under pain control and feel much more manageable.  I'm still not eating much  (although the nutritionist did send up a chocolate high-protein shake which I managed to get down; my nurse Jean was very proud of me).  Best of all, my white blood cell count, which is still way too low, has at least started rising, and my fever seems to be mostly better as of this afternoon. 

Most importantly, Dr. Kaplan told me that I am having a reaction to chemo that's a 12 on a scale of 1-10.  But what that also means is that the cancer is really susceptible to chemo.  So he's confident that he can lower the dosage for the next two rounds without effecting the overall outcome, but while preventing me from losing my marbles again.  I'm going to be sticking around here till at least Friday so I will be healthy enough for my next round of chemo, and hopefully by then:

• my mouth will be mostly healed
• I'll have ways of doing pain management at home too, and
• I can get back to my bad-ass bald look, which works way, way better when I'm not pairing it with a hospital gown

Ugh

One of the doctors I talked to before starting this whole cancer treatment thing told me to avoid cancer blogs, because the people who blog are the ones who are having a hard time.  Well I think it's true, and we're in for a depressing series of posts; sorry folks.  Feel free to skip ahead about 17 weeks if you can.
I just had my first actual throwing up incident since starting chemo - and it was from the Vicodin I'm using to try to mask the intense pain of my mouth sores.  I've never had issues with Vicodin in the past, not that I've taken it all that often, but apparently chemo drugs + side effect drugs + the soup I had for lunch did not make a good combination.  Ugh. 

WTF.  It would all be worth it if the Vicodin actually stopped the pain, but it doesn't even do that.  I think I may lose my mind.  If all future blog posts sound like ramblings of a crazy person, I'm going to blame it on my unbelievably sore tongue. 

Okay, back to trying to distract myself with Orange is the New Black.  I guess I should be grateful I'm not in prison?

Least Favorite Side Effect

I have a beautifully shaped head, thank goodness.  I found this out today when I went to get all my hair shaved off of course; it was starting to fall out and stressing me out to wonder when it would go in clumps, so I bit the bullet and got rid of it.  Turns out that while it's not awesome, it's okay. 

Less awesome is the fact that my tongue feels like it's been burned and bitten to within an inch of its life; one of the delightful side-effects of chemo for some lucky people.  I will (for now) name this my least favorite thing.  There's some kind of special mouthwash my doctor prescribed me last week, but it turns out it contains an ingredient I'm allergic to (good thing the pharmacist figured that out before giving it to me, I guess).  Instead I've been stuck with salt-water rinses which aren't doing much.  Consider me annoyed. 

It's a "fuck cancer" kinda day. 

Hopefully I'll figure something out or this is going to be a really, really long 17 more weeks of chemo.

A Question of Etiquette

My dilemma last weekend: what do you bring the guy who's volunteered to make you special brownies to help with your nausea and won't accept payment? 

So I was pretty nauseous last AC chemo round, and I know I can get a medical marijuana license but instead I wanted to see if it would actually make an impact first, so a friend of a friend hooked me up.  He was super sweet, told me he had tongue cancer when he was in his 20's, looked up info on dosages for me, and baked really delicious brownies.  But he said it wasn't his style to let me pay for something like that so aside from promising to "pay it forward" which I will do, I wanted to get him something.  Some suggestions from friends included:

• Munchies
• Fancy Brownie Mix
• Mellow music
• Something football related (he's a boy so I guess this is the default answer)

I went with a bottle of wine.  Turns out he doesn't drink...sigh...but his fiancée does so at least it was a gesture.  I really think Miss Manners should cover this in an upcoming letter!

Morning Regimen

It's still a little disconcerting that I have to fill my body with chemicals, and then spend the next two weeks filling myself with other chemicals to counteract the side-effects of all the crap I just ingested.  For example, here is a partial set of all the stuff I had to take this morning.

Hopefully that makes the whole chemo brain moment (per earlier blog post) make more sense! 

   

My First Chemo Brain Moment, Or, The Time I Found Out I Would Make an Awful Bulimic

One of the side-effects of chemotherapy can be what's called "chemo brain" - from what I gather, it's a loss of short-term memory and inability to think quickly on your feet.  It can be a major issue or minor one, and can last just while you're having chemo, or months, years, or forever afterwards.

For the most part, I've been okay thankfully.  I'm definitely tired and a little distracted, but nothing major.  Then the other day I had my first total chemo brain moment.  It was last Tuesday, and I was feeling okay enough to plan to go into work that day at least for a while. 

In the morning, I take a bunch of pills, but the regimen changes over the course of the treatment (so it's different on day 1, 2, 10, etc.)  I'd gotten up, and Ethan was hanging out in bed with me, and I reached over to grab my ibuprofen, which is in a prescription bottle because after my surgery was over I'd refilled the prescription-grade ibuprofen with the regular over the counter stuff.  I took three pills, swallowed them, said something to Ethan, then looked back at my nightstand, and somehow became convinced that I'd taken the wrong medicine. 

At first I was sure I'd taken some anti-nausea medicine, of which I'm supposed to take 3 pills over the course of 24 hours, so I freaked out.  Now I should point out that the ibuprofen is in a bottle that is tall, skinny, orange, and has a white lid.  The anti-nausea medicine, on the other hand, is in a bottle that is squat and white with a blue lid.  There's no way I confused them.  But that didn't stop me from running downstairs to find Jeff and scream that I needed to make myself throw up but didn't know how.  So he told me, and I proceeded to try to throw up for maybe 5 minutes.  I failed miserably. 

Then I went back upstairs to try to see if maybe this had been a horrible mistake, and instead concluded that rather than take 3 anti-nausea pills, I had taken 3 sleeping pills instead (these at least were in a similar container, but they are tiny compared to the ibuprofen so it's pretty impossible that I had mistaken one for the other).  At which point I started screaming, "I have to give an fucking exec presentation in an hour and a half and I just fucking took 3 sleeping pills!", ran downstairs, and tried to throw up again.  And failed.

Why all the running up and down?  Why all the swearing?  I promise I am normally quite calm in a crisis.  But I blame I Chemo Brain (tm).

Anyway, the story ends just fine - I went back upstairs, and conveniently the lid to the ibuprofen has a timer on it that tells you how long its been since the bottle was opened.  I looked more carefully since I'd concluded I was just going to have to spend the next 24 hours in bed and noticed that the timer said 7 minutes.  So it turned out I'd taken the ibuprofen after all. 

And the presentation went just fine.  The End.

Looking forward to another installment of Chemo Brain?  Don't worry, I'm sure I'll have more to share.

In Which I Look Like Sandra Bullock, Supposedly

I'd been stressing about my hair for a while - it's supposed to fall out this week and I couldn't handle the drama, so I figured I'd whack most of it off and take advantage of the fact that I can try a haircut out, risk free, for a couple weeks.  Turns out I kind of like it! 

 

However, the comment I get most frequently is that I look like Sandra Bullock in Gravity.  Unfortunately I haven't seen the movie, but from what I can tell she spends the whole thing wearing a ginormous astronaut helmet, so I'm a little confused.  Thoughts?  

 

 

 

 

AC Chemo Week 2 Summary

Well, I made it through last week and so relieved it was easier than the one before!  Short version:

Mon - Tired, but made it to work a few hours
Tues - Less tired, but made it to work a few hours
Wed - Less tired, made it to work more hours
Thurs - 80% capacity
Fri - 90% capacity, and even picked the kids up myself for the first time since surgery!  Woo-hoo!

Unfortunately everything else in life outside my health decided to go cattywampus.  But at least I was able to use that word to describe it, which I have never managed to do before.  So there's a silver lining. 

AC Chemo Day 4

I was confused about how I was supposed to count - was the day you get chemo day 0 or day 1 (turns out it's day 1)?  Because days 3-5 are supposed to be the worst and yesterday was not horrible.  
But then I hit day 4!  Yay.  

On the plus side, I do not feel like a truck has run me over.  But I do feel tired.  Tireder than yesterday, and less interested in forcing myself outside for a nice walk or even up to get a shower.  And I definitely am more nauseous.  Unfortunately the thing that best helps my nausea is eating, but I have no desire to get through this cancer thing and then find myself having to lose 300lbs, so I'm going to have to find another way.  Plus obesity is a risk factor for cancer, so can't have that.  

What's helping so far today.  

• Work, yay!  I went into the office for a few hours the last couple mornings; that was great.  Today I'm working from home since the extra effort of getting dressed and walking to my office sounds like a bit much.  Still, so nice to have a distraction and feel somewhat productive.
• Kitties.  Even if they do want to sit somewhere between my face and my computer screen, or climb up on my chest which is still healing post-surgery.
• Check-ins from friends.  Thanks to those who are thinking of me.  It's so appreciated.  
• Lifesavers.  Thanks Shauna for getting them for me, they do help with the nausea. 

Here's hoping day 5 is on the upswing, and hey, only 3 more AC chemo doses to go before switching to the (supposedly) easier taxol.  Not that I'm counting!

AC Chemo Day 1

Day 1 – not too bad.

So glad to be done with day 1 of chemo.  The whole thing felt like it took about three times as long as it needed with lab backups and a bunch of waiting around, but I had great visits from friends, some awesome anti-anxiety medication in my IV which made me feel like I’d been sipping margaritas all afternoon, and a lovely, kind nurse.  Today and tomorrow are supposed to be easier than the last part of the week, so hopefully things will continue to be pretty smooth. 

Tips for next time:

• I don’t need to lug around my power cords, or bring two books instead of one
• My water bottle was invaluable, but fill it out at the main lobby rather than in the kitchen
• Apparently Essential Baking Co and Pasta & Co are on the way to the hospital; my friend Michelle says those are the places to stop to pick up lunch on the way over unless you want to eat horrible sandwiches and over-cooked custard.
• Having visitors is essential.  I’ll need to figure out another rotation for the next few appointments so let me know if you’re interested!  I can tell you it was quite entertaining J  We were definitely the liveliest area of the chemo ward, and discussed wide ranging topics from current events and political appointments to planned haircuts for me before my hair comes out.  I’m thinking something like this, feedback welcome:
  

Now that I'm home I just feel a little woozy but otherwise okay.  Hopefully I’ll get some sleep and be able to function tomorrow!  

Coming Soon

Well it’s been a hard week – I go about my life mostly okay and then remember that I start chemo on Monday.

I hate the unknown; I hate not knowing how I will feel; and most of all I hate that I felt great and now I keep throwing myself into things that make me feel worse.  I know the surgery, chemo, and (now planned) radiation are necessary, but it sucks to feel healthy until the doctors start treating you and make you feel worse.  I’m still looking for the Star-Trek-like medical tricorder or something that could just use a nice painless laser to fix me up.    

So here’s the chemo plan:

Sept 30: AC Chemo

Oct 14: AC Chemo day

Oct 28: AC Chemo day

Nov 11: AC Chemo day

Nov 18: Taxol Chemo, weekly through Feb 10th

The AC is the hard stuff; supposedly the Taxol should be easier.  I’d love visitors though while I’m at the hospital – the AC in particular is kind of an all-day thing.  And I’ve been told I can get a private room and throw a party if I want to, so I just need the incentive of friends being there!

Then when we’re done with that, I take three weeks off and then start 5-day-per-week radiation for six weeks.  We weren’t sure whether I’d need it, but I met with Dr. Pelton, the radiation oncologist, yesterday, and he confirmed it.  He said that because there was such extensive (though non-invasive) cancer, even though the margins were clear they were not very wide (in other words, there wasn’t any cancer on the edges of the areas they removed, but it was pretty close).  That means there’s more of a chance that a little bit was left over somewhere, and so given that it’s an aggressive cancer, and that I’m young, he recommends radiation.  That sucks, partly because radiation is inconvenient since you need to go in every day for your 15-minute “suntan” and makes you tired, but mostly because it makes the reconstructive surgery much more challenging.  Oh well, I’d rather avoid getting cancer again down the line…

I also started physical therapy yesterday, which I’ll be doing for at least the next month and a half.  And I got a long list of things I need to do – forever - to help lower my chances of developing lymphedema, including avoiding sunburn, insect bites, tight sleeves, holding heavy bags, etc on my left arm.  I also can’t immerse my arm in a hot tub for more than a few seconds at a time.  And I am supposed to try to exercise with some special sleeve on. Ugh.  I’m sure I’ll adjust, but for right now it sounds like a major PITA. 

Finally, I have started browsing for wigs.  All the wigs seem to have names, which is entertaining.  So I can be Nora or Ophelia or Hope.  While I am kind of planning to do a different wig each day, I’m going to try to start with one that’s at least kind of close to my actual hair.  I have a friend of a friend who works in theater and has said she can order me wigs wholesale, but the photos on the site she uses are each more horrible than the next so I’m putting it off.  Go take a look though and let me know if you think any look good or, more likely, would be so funny I have to buy them.  

Pathology Report In

So a mixed bag on the pathology report; mostly good news with a couple issues mixed in.

The Good:

• The tumor was composed of mostly non-invasive cancer (a 7 cm section).  There were three invasive tumors, of 1.9 cm, 0.9 cm, and 0.8 cm each.  This is great because it means the dangerous cancer was fairly contained. 
• They were able to get “clear margins”, which means that no cancer cells have been seen at the outer edge of the tissue that was removed.  Also great news.
• And, there was no sign of cancer in any of the veins nearby.
• And no sign of anything on my right side.

The Not As Good:

• It turns out that of the 5 lymph nodes they removed, one did have “micro-metastases”, or cancer cells smaller than 2 mm.  That’s okay; the other 4 were clear and again there’s no need to go back in and take the rest out; if there’s any more it will get removed by the chemo.
• They found a little “DCIS” in my ducts, which is a non-invasive cancer, but it can put you at risk of getting invasive cancer.  That means that either I need to have radiation to take care of it, or they will have to remove my nipple during reconstructive surgery.  My doctor said that of the 75 times he’s done follow-up nipple removal, only 2 of them have required any additional surgery beyond that, and it can wait until my reconstruction either way. 

So the upshot is that I may or may not need radiation, but the cancer is basically gone.  Now on to schedule a couple more visits with radiation oncologists to get their opinions on what to do.  Radiation means that my reconstructive options are a bit more extreme, but still feasible.   

I am a little bummed the report is not 100% clear, but still happy to be recovering, and super grateful for all the nice emails, phone calls, flowers, and gifts folks have been sending.  Thanks so much to everyone!

Happy New Year

Right before surgery Tuesday morning my awesome surgeon asked if I had any questions, and I said no, but that I was confident that we were doing the right thing.  And he pointed out that after we were done, I would be cured…the rest of the treatments are just making sure the cancer doesn’t come back.    So here’s to a Happy New Year that’s cancer free!

Thoughts post-surgery:

• Considering that it was about a 6-hour surgery, it’s pretty crazy that I just had to stay at the hospital overnight, and was mobile just a couple hours after surgery.  
•  My lymph nodes were clear of cancer (hooray!) so they only had to remove the first set (5 of them in my case).  That means a lower risk of lymphedema in my lifetime.
•  I continued my trend of being dramatically ill from the anesthesia for the rest of the day post-surgery.  Ugh.  I’m so not looking forward to the two reconstructive surgeries I’ll have to have too!
•  I woke up super stiff - how did my neck and legs get so sore?  And why did my cheeks feel like someone had punched them?  But as of Thurs I was feeling mostly better on that front.
•  Drains are gross, and I can’t wait to get them out (usually 10 days post-surgery).  They’re the thing that still hurts right now.
•  I am a terrible patient; my wonderful mother-in-law and husband have lectured me at least 10 times a day to take it easier but I am bored out of my mind and terrible at sitting still.  So feel bad for my family; I think they’re tired of coming upstairs and finding me sitting up checking my email instead of sleeping. 

Pathology report is due back today sometime; hopefully it will say the tumor was smaller than expected.

Shana Tova to those celebrating!  

Ta Ta, Ta-Tas

Bye, bye, boobies.  (Credit for the ta-tas line goes to my friend Erin :)

I guess they’ve served me well.  I remember how embarrassed I was when I first got them, and how I perfected the art of tying my sweater over my shoulders to hide them.  And then there was the phase of showing them off in reasonably inappropriate low-cut shirts through my late teens and early twenties.  And finally the sweet quiet moments of nursing both my babies with them.  Throughout the last month or so, I’ve been mostly ok, focused on getting to a plan, with occasional bouts of fear or anger.  The last couple days, though, I’ve just felt sad – it’s definitely the end of a chapter of my life, but hopefully the beginning of a LONG and healthy chapter of being cancer free!

My surgery’s scheduled for tomorrow morning, and will run five and a half hours.  I’ll be having a:

• Double mastectomy
• Chemo port insertion
• Sentinel lymph node biopsy (which actually means removal) on the left side; and if that comes back positive for cancer Dr. Clarfeld will take out the remaining lymph nodes

I’ll be in the hospital overnight and then back home the next morning; then will have a few weeks to recover before chemo starts. 

See you on the other side.

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