Peace of Mind

So, the bone scan was negative.  Woohoo!

In true Dr. Sara fashion, he didn't beat around the bush but rather walked into my exam room and blurted out those words (well, maybe he left out the "woohoo").  Of course, I was relieved, but after he told me last time that he wasn't too worried about it, I wasn't too worried about it either.

Still, it's very nice to know for sure!  And, who knows, the scan could have showed nothing on my spine but new spots we didn't even know about, since it was a head-to-toe test, so that is nice to know for some peace of mind too.

Dr. Sara reiterated that I am not going crazy or turning into a hypochondriac to start worrying about every little thing.  He said that I am not a "worrier" and in fact I worry just about the right amount.  But once you're diagnosed with cancer, it's hard not to let your mind go there every time you feel a little ache or pain.

He told me that growing up in Lebanon, his family used to get fresh milk delivered every day straight from the farm.  Before they could drink it, it would have to be boiled.  Anyone who accidentally burned their tongue on boiled milk would be careful not to make that mistake again, because it was painful.  Now, yogurt is also a staple of the Middle Eastern diet.  So, they have a saying: anyone who has burned their tongue on boiled milk blows wind on yogurt!  Point being, you become a little paranoid, and that is normal.

Dr. Sara said that I am still a normal person, and I'm still going to get normal aches and pains, headaches, etc., just like I did before I got cancer.  The difference is that before, I would think nothing of it, and now I wonder if every little thing is cancer.  He said that one good thing to keep in mind is that aches and pains that come and go are almost always nothing.  Aches and pains that come and stay are still usually nothing, but should still be checked.  I guess that makes sense - if there is a tumor growing somewhere, it's not going to magically grow and shrink and grow again, but will probably be able to be felt constantly.

He also said that no matter what, if there is ever anything bothering me (even if it's a pain that comes and goes) I should never hold back from telling him, and we'll get it checked out.  I'm not really one to hold back, so that shouldn't be a problem!

Now, I am nearing the halfway point of this course of chemo.  I started in early October and it's meant to last about 5-6 months or so, and I am still feeling no side effects.  Still no numbness or tingling in my fingers or toes, and my blood counts are still good.  My eyelashes don't seem to be falling out as much, which is nice.  They're still definitely thinner than usual, but I'm probably the only one noticing.

My hair is still fully in tact and in fact, I got my first haircut this week!  I decided I wanted a little more shaping too it (longer on top, shorter in back), plus I felt like I had leftover damaged chemo hair on the ends so I wanted to get rid of that.

Check it out:

My mom took this pic in the hospital waiting room Friday.  I'm happy with my hair right now, and you know, according to Glamour magazine, the pixie cut is "in" right now, so I'm going to stick with this for a little while!  Special thanks to my stylist Rita!

Well, that is all for now.  I have two more treatments left in 2010, and then it will be on to 2011!!

I Think I'm Paranoid

(Another musical reference - remember the Garbage song from the 90's??)

For the most part, things are still status quo.  My treatments have continued on schedule (except I got to skip Thanksgiving week which was nice!), and I am still not feeling any of the expected side effects from the chemo.  No numbness or tingling in my fingers and toes (yet), and so far my blood counts are just fine.

Oddly enough, however, I think I'm losing my eyelashes.  It started a couple weeks ago - every time I washed my face I would seem to lose 2 or 3.  On the bright side, I made a lot of wishes by blowing the stray lashes off my thumb.  I still have some eyelashes, but they are noticeably thinner (at least to me) and mascara is becoming more difficult to apply.

I asked Dr. Sara about it and he said it's possible that this is a side effect of the chemo although usually the eyelashes are the last to go!  Which was the case when I lost my hair on the first round.  Weird.  I am not losing my hair at all (thankfully!) so this must be some kind of fluky thing.  Which is just fine with me, I guess - could be worse!

Now, you know how I always say that I am not going to worry about things until I have a reason to worry?  Well, I've found that promise a little harder to stick by the last few weeks.  I'm starting to experience some of the paranoia that I guess is inevitable when you have this dumb disease.

It all started in the couple weeks leading up to Thanksgiving.  I was really busy at work - staying late and coming in early, and even doing some work from home over the weekend.  Lots of time logged at the computer and then I went on a business trip for a few days where I brought my laptop and lugged the heavy thing through the airport.

So, naturally, I started to feel some tension and soreness in my back during this time.  The problem is that when you have cancer, you become hyper aware of every little thing in your body, and there is always the nagging thought in your head that "what if this is not run-of-the-mill soreness, what if it's not a normal headache... what if it's the big bad C make another appearance?"  It sucks, because once you entertain this thought it's hard to get it out of your head.

Every time I get checked out these days, Dr. Sara asks me if I'm having any back pain because of those two spots on my spine.  So of course I was very aware of this when thinking about my back soreness.  There've been times over the last couple weeks where I got really worried about it and I did lose a couple nights' sleep over it (but only a couple).  But things always seem 10 times worse at night for some reason and then in the light of day you realize how ridiculous you were being.

And then there were other times (especially in the morning when I was well rested) when I thought I didn't feel anything at all and I thought I must be going crazy.  And then the fleeting but quickly dismissed "oh no - if I'm going crazy does that mean the cancer could be in my brain?"!

So, on Friday I told Dr. Sara all about it.  He said I am not going crazy and it is perfectly normal to feel this way and be worried about things that I feel.  He examined me and said that he thinks it is just muscle soreness that I'm feeling, for two reasons.  One, the specific spot that I seemed to feel it most is not right on the spine, but a little to the left.  Two, he said the lesions that I do have (which have always appeared healed since they were discovered), are so small and located in a place that he wouldn't expect anyone to feel them.

But, just to give us all some peace of mind, I am going to have a bone scan on Wednesday.  Dr. Sara said that he is not worried and he is not going to lose any sleep over it, and neither should I, but it will be good to have the scan just to be sure.  I will get the results when I go for my regular chemo appointment on Friday.

This experience has made me realize that having cancer is like living under your own personal constant terrorist threat.  Terrorists are fearmongers, and that is something they have in common with cancer.  But I don't want to be the type of person who walks around with a gas mask in her purse because she's so paranoid!  And I don't want to go running to Dr. Sara to get scanned every time I feel something a little off.  But, it was good hear Dr. Sara say that I'm being completely normal, and even better to hear him say that he's not worried about it but we're going to get it checked out anyway.

Feeling Good*

So it's been awhile since I've blogged... but that's because I don't really have much to say!  I've now been through the second cycle of this new chemo, and so far, so good.  I have no side effects to speak of (yet), and actually right now I feel 100% normal and healthy.

Of course, I know that the more treatments I have the more likely I'll start to feel some of the side effects, most likely the neuropathy (numbness and tingling in my fingers and toes) and my blood counts might start to drop.  I'm going to have to be careful this winter to try not to get sick!  At least I had the flu shot so I should be covered there.

My chemo treatments are following the familiar routine: vitals, seeing Dr. Sara, then sitting in the infusion suite for a bit while I get my treatment.  I'm liking the shorter treatments, since I can go to work after.  I haven't had to miss a full day since I got my port placed!

I've even been contemplating getting back into a workout routine.  Of course, I haven't actually done anything about it yet (although I did watch the NYC Marathon on TV last weekend - does that count?) but there is really nothing stopping me from starting to work out here and there.  We'll see... maybe one of these days I'll get my mind around it and actually go for a run.  I'm sure it will feel good and I'll be glad I did, it's just that I need to get over the mental hurdle!

Other than that, I've just been living my life as normally as I can.  Of course, cancer is on my mind every day, but it's a "new normal" that I've gotten used to.  One of the many things that's annoying about cancer is that it makes you hyper-aware of your body, so every time I feel the slightest little soreness or twinge my mind automatically wonders if it's cancer-related.  As I said, it's quite annoying, but I'm learning to live with it and I know if any little thing I feel persists (which nothing has yet) I'll just tell Dr. Sara and get it checked out.

This Friday starts my third cycle, so I will have my Herceptin + Navelbine treatment.  Dr. Sara is very good about being flexible to work around my schedule, so I will get Thanksgiving week "off" and then will go back the following Friday for another Herceptin + Navelbine treatment.

So as I said, I don't really have much to report this time, but that is a good thing!

*Today's blog title is a reference to the Muse song by the same name.  They are one of my favorite bands and I thought it was appropriate.  There are lots of versions of this song (originally Nina Simone), so I thought I'd clarify that I mean the Muse version.  Not that anyone cares but me, I know, but hey - it's my blog!  :)

Port-a-Chemo

So, "Chemo: The Sequel" has officially begun.  But first, I had to get my port "placed."

This took place on a Wednesday morning a couple weeks ago.  My friend Bernadette came with me (since Mom and Dad were in Europe at the time).  We arrived at the Interventional Radiology department (sounds fancy, doesn't it?) right on time.  Only thing was, there was not a soul in the department when we got there.  Seriously, we could have tried surfing on the gurneys and no one would know!  I looked around for a bell to ring or something, but then I remembered that it's not a hotel.

After a few minutes a nurse came in and assigned us to one of the "rooms" (more like a bay).  After waiting there for a few minutes another nurse came by and asked me a few questions and had me change into a hospital gown.  She was bright and funny and before I got changed she closed the shades in my room so that "all of New York City" couldn't watch me change (because then my boob flash count would have seriously increased!).  She then gave me an IV, because even though the point of this procedure was so that I would no longer need IVs, I still needed one last IV so I could get the antibiotics and sedation.

Next, the Physician's Assistant  (PA) came by and explained the procedure.  She said first the area would be thoroughly cleaned three times - they are very vigilant about infection control.  Then, they would give me the sedation drugs before they started the actual procedure.  These drugs wouldn't put me out completely, but would relax me so that I didn't feel anything.  Also there was a chance I might not remember the procedure afterwards.

Before they placed the port they would temporarily have the catheter travel down to my vena cava, the large vein in the center of the chest.  She said as it went down, sometimes it diverted into the heart, and if it did this it might "tickle the heart" which would cause me to have an irregular heartbeat for a bit.  She said if they saw it go near the heart she might tell me to take a deep breath and that sometimes gets it back on track to where it has to go.

Once this was done the port would be placed.  There would be a small incision in the left part of my chest and the port itself would be placed just below the incision.  The catheter would lead up to a large vein in my neck.  When I was done I would have a bandage on the incision and another on my neck where they would make a tiny incision to get to the vein in my neck.

So after this was all explained to me, I was wheeled into the procedure room.  Unlike my big-time surgeries, I didn't walk in and climb up on the table myself - I was wheeled in and then had to scootch over to the table.  I noticed large monitors over the table, which would show the doctors what was happening during the procedure since this whole thing was CT-guided.

They had me turn my head to the right and placed a drape over me - including my face - so I really couldn't see anything during the whole procedure except for the wall.  After they washed the area three times as promised, the sedation drugs kicked in and the procedure started. 

Now, the night before my procedure I had watched the Britney Spears episode of Glee.  If you haven't seen it, in the episode several of the kids have to go to the dentist and while they're under anasthesia they have dreams that they are in Britney videos.  I'd had Britney songs in my head all morning (I've got to admit her songs are catchy), so of course as the drugs kicked in I was wondering if I would have a Britney fantasy too.  Sadly, it was not to be.  But they did play music and they even asked me if I had a preference as to what station they played, but I let them pick the station.  I think I remember some Rolling Stones and maybe some Springsteen, but the details are fuzzy.

I was awake for the whole procedure, and I remember it, but I didn't feel anything except pressure.  At one point, they did ask me to take a deep breath, so I wonder if the catheter was about to "tickle my heart"!

The whole thing took about an hour.  As it was finishing up I started to shiver - all of a sudden I was FREEZING.  This happened the whole ride back to my "room" (really not a long ride) and my teeth were chattering when I got back.  The nurse said that the drugs can cause this, and luckily it didn't last long.  When I got back I was perfectly lucid and "normal" - I think a little to Bernie's disappointment, since she was probably hoping I would say some funny things!

After the procedure they monitored me for a bit and during this time the nurse noticed that my upper back was very red - like I had a rash.  I didn't feel any pain or itchiness - in fact, I would never have known that it was red if she hadn't noticed it.  The nurse, PA and doctor all took a look and thought I might be having some kind of allergic reaction.  So they gave me some hydroxysine, had me wait a little while longer, and then when they saw the redness start to go down, they sent me home.

The Next Step

Well, look at that - I kept my promise.  After my last post came after my longest stretch ever without a post, I am blogging again less than 24 hours later - the shortest time ever between posts.  OK, I know it's all because so much has happened during the last few weeks that I couldn't fit it all into one post, but whatever.  Details, details...

Anyway, as I mentioned in my last post, in the last few weeks while all the radiation stuff has been going on, I've also had two Herceptin treatments.  The first one, back on August 25th, was the first time I'd seen Dr. Sara since my surgeries (he was traveling during my previous treatment and I saw another doctor that day in his absence).

Dr. Sara remarked on how well I'd recovered from surgery and said Dr. Attiyeh had told him he'd almost never seen anyone have to stay in the hospital for only two days after the kind of liver surgery that I had.  I said, "Well, I'm an overachiever, what can I say?"  :)

After the typical exam, where Dr. Sara and Deborah mentioned that my scars looked good - and that usually liver surgery results in a big horizontal scar that looks like a hockey stick, so I was lucky to have my vertical one - we sat down to talk.

Dr. Sara went over my the pathology results from both of my surgeries.  Of course, Dr. Rosenbaum Smith and Dr. Attiyeh had already gone over these with me, so there were no real surprises, but when I'd seen Dr. Rosenbaum Smith she hadn't had the final report yet, so Dr. Sara went over that with my parents and me.

As Dr. RS had said, there was still quite a bit of cancer left in my breast, and I did have positive lymph nodes - 8 out of 11 to be exact.  I didn't really understand the significance of the number of lymph nodes so I asked Dr. Sara if everyone has the same number.  He said no - the number can vary greatly.  Most people have at least 10, and some people have as many as 50.  And just because I only had 11 removed (all that Dr. RS had found) doesn't mean I didn't have more at one time - the cancer could have destroyed some lymph nodes along the way.

The results showed that the chemo I'd had before surgery had had a significant effect on the cancer, but not a complete effect.  Not that we expected that - we knew from my scans that there was still cancer in the breast.

One other significant thing that the pathology report did show was that 35% percent of the remaining cancer was estrogen-receptor positive.  Dr. Sara said he was very pleased to see that because it meant that he would be able to give me Tamoxifen, a drug that is given to breast cancer patients who are hormone-receptor positive for five years following treatment.  I've read that it can reduce the risk of a recurrence by up to 50%.  Now, my original biopsy results did show that I had some estrogen resceptor positive cells, but the percentage was not exactly known - it said "10-30% percent, mostly weak".  Now, we know that the percentage was high enough for the Tamoxifen to hopefully be effective.  Dr. Sara also said that this was good because the estrogen receptor negative cancer tends to be more aggressive, so hopefully that means any cancer that might remain is less aggressive (meaning slower growing).

As for the liver, just as Dr. Attiyeh had said, there was still a very small amount of cancer cells found in the liver, but it was greatly reduced from what my original scans had shown, and the part that was removed had clear margins.

Dr. Sara gave me copies of both pathology reports, and I have to say they are kind of funny and kind of weird to read.  Half of it I don't understand, of course, but there is a section where the "specimen" is described and it says things like "the specimen is received fresh" (ew) and "situated central on the skin surface is an unremarkable nipple" (well, exCUSE me!).  Also, the masses which I presume are the remaining tumors are described as "tan" and the previous biopsy site appeared "bright orange" - who knew?

Anyway, after going through the reports, Dr. Sara said that the results - especially the fact that I had positive lymph nodes - led him to decide that I should get more chemo.  There is still a risk that there could be microscopic cancer cells lurking in my body, just hunkering down until they one day decide to start colonizing.  Dr. Sara said that if these results had appeared post-surgery in a patient who had not had chemo first, they would definitely give that patient chemo.  And since we are being aggressive with my treatment and pulling out all the stops to cure me, not just treat, he recommends that I have more chemo.

This did not come as a shock to me.  During my previous Herceptin treatment, when I'd seen another doctor while Dr. Sara was traveling, I had asked if I would need to go on Tamoxifen. When I asked this the doctor and Deborah had said that that would be up to Dr. Sara - whether he would give me more chemo or put me on Tamoxifen (turns out it will be both).  It was kind of said in passing, but I caught it so I already had in mind that more chemo was a possibility.

Now the next round of chemo will not be the same as the first.  Dr. Sara said that they have to change up the drugs they give me because after a while chemo regimens sort of "run their course" and are not as effective.  It's hard to say for sure, but it's possible that either the chemo I had before had run its course, or that the cancer remaining was resistant to those drugs all along.

So, this time I will be getting a new drug (not new, but new to me) called Navelbine.  Dr. Sara said he chose this drug over some other options (including Adriamycin, which I'd read about and knew as a nasty one - it's called the "red devil" because of its red color and harsh side effects, so I'm glad I won't be having that) because Navelbine is known to have a compound effect when given in conjunction with Herceptin.  As Dr. Sara put it, Navelbine plus Herceptin is more effective together; i.e. 1 + 1 = 3, not 2.

The good news is that Navelbine is not so bad with the side effects.  I will not lose my hair again, I will not have that "icky" feeling I had for a few days after chemo last time, and I will not have the dry mouth nastiness again.  Also, I will not need any pre-meds, like Hydroxizine or the steroid Dexamethasone that I had to take last time, which helped contribute to some of the side effects I felt.

(As a side note, speaking of my hair... it has been coming back at a good pace over the summer.  Here is a picture of me and Claire on Labor Day weekend:

Not bad, huh?  As you can see, I definitely have more hair than her now! I probably never would have asked to have my hair cut this short, but I don't mind it at all.  And it makes it pretty easy to get ready in the morning which is a nice bonus!)

Getting Radiated

Uh oh.  It's been 4 weeks since my last post and I said I wasn't going to that, didn't I?  (Actually 4 weeks minus one day, if you want to get technical about it.)  Oops.  Well, this time I won't promise not to go more than a couple weeks without blogging - I'll just say that I'll TRY not to go too long between posts.  Sound good?  OK, I feel better now that that's out of the way.

Since my last post I've had: two Herceptin treatments, one appointment with a neurosurgeon, two MRIs,  one radiation "plan check", and two actual radiation treatments.  Whew!  That is a lot to catch up on, so let's get started...

When we last left off (I know, it was so long ago you don't remember...), I was waiting to hear from Radiation Oncology about when the radiation to my spine would start.  It turns out that a few things needed to happen before treatment could begin.

First, I had to go see a neurosurgeon, Dr. Cohen.  My radiation oncologist Dr. Evans just wanted me to meet Dr. Cohen and have him evaluate me before starting treatment just in case I ever needed a neurosurgeon (which freaked me out only a little).  The appointment was very easy - I didn't even have to change into a gown (one of the few doctor's appointments I've had recently that didn't involve at least one boob flash).  Dr. Cohen just asked me to do simple stuff like touch my toes, walk on my heels, etc.  He asked if I've had any pain in my back or any numbness or tingling (I haven't).

After this quick exam I went into his office where he told me that from a neurological standpoint I was perfectly healthy.  He said he considered the two spots on my spine "benign" - which doesn't mean that they were not cancer, just that they do not currently pose a threat to my spinal cord.  So that was good to hear.  He said he didn't even feel the need to order an MRI, but that if Dr. Evans did, which he expected (and he turned out to be right about that), he would take a look.  But all in all, it was a very easy appointment and I was in and out of there pretty quickly.

The following week I got a call from Dr. Evans' office that radiation would start on Tuesday, Sept. 7th.  But first, I needed to have an MRI, just as Dr. Cohen predicted.  So on the Friday before Labor Day weekend, I went to the imaging place for the MRI to my spine.  Isn't that how everyone kicks off a holiday weekend - with a medical test?  Oh, it's just me? :)

After waiting AN HOUR (at least they warned me and at least I had a book!) they finally called me.  This MRI was just like the others.  I had to lie still while the magnets clanged above me, though I had earplugs as usual, and then halfway through they gave me an injection of contrast through an IV before I had the second set of "pictures" taken.  Ever since my 6-needle-stick day I've been a little nervous about getting IVs since I know my veins are shot and I only have one arm available.  But luckily the technician got it on the first try.  Whew!

The Girl With Seven Tattoos

Now that surgery is behind me (whew!) it's time to turn our attention to the next step in my treatment - radiation.

A couple weeks ago I added yet another doctor to my repertoire when I met my radiation oncologist - Dr. Evans - for the first time.

After doing a physical exam, Dr. Evans sat down to talk to my parents and me.  He said he was already very familiar with my case, as he was present at the "tumor board" meeting where Dr. Sara had presented my situation after the two spots on my spine were discovered.  He told me that in the meeting Dr. Sara said that I was young, strong and motivated, and that he felt very strongly that these two spots to the spine should receive treatment, despite the fact that typically, a case like mine would not call for treatment to the bone.

The thing is, even though my bone scan came back negative, meaning it did not show evidence of active cancer cells, these tests are not foolproof and it doesn't mean that there are not still microscopic cells remaining even after the chemo.  Just as my PET scan before surgery did not detect any active cancer in my liver, but the pathology report following surgery did find microscopic cells, the same could very well be true with these two spots on my spine.  So we are not taking any chances and are going to blast those suckers with radiation to try to kill any cells that may possibly have survived chemo.

Of course, I will also need radiation to the breast, for the same reason.  I have always known I would need radiation, because radiation treatment is indicated in cases where the tumor is larger than 5 cm, which mine was.  And especially since my post-surgery pathology report found a fair amount of cancer still remaining along with positive lymph nodes, well it is all the more reason to blast the area with radiation too in order to kill any pesky cells that may have remained.

However, Dr. Evans said that the priority is to treat the spine first.  Unlike the breast radiation, in which I will have to go for treatment for about a half hour every day for 6-7 weeks, the radiation to the spine will take place in a total of 2-5 sessions, each of which will be about an hour or so in length.

The first spot will likely be treated in just one session, since it is not located near the spinal cord and therefore is safe to blast all at once.  However, the second spot is located much closer to the spinal cord, and so to be safe, treatment of this spot will probably take place in 2-4 sessions.

As far as side effects are concerned, Dr. Evans said that I will not feel anything during treatment - it is like getting an x-ray.  However, I may feel some fatigue as treatment goes on, and I may notice some scratchiness in my throat or lungs for a day or two after treatment.  Since one of the spots is located close to my spinal cord, there is also a very low risk (Dr. Evan said less than 1%) of paralysis.  But I am not really worried about this because the risk is so low.

I asked Dr. Evans what the "measurement of success" will be, i.e. how will we know if the radiation worked.  He said that I will have a PET scan following treatment, but because of the radiation itself can skew test results, we have to wait at least 3 months after treatment is complete before we can get an accurate reading.  Since my last PET scan did not show "active" cells, but rather two areas that appeared to have already been treated, between you and me I think we will know if the treatment worked when the cancer either doesn't come back or it does.

The first step in the treatment is to have a "treatment planning CT scan," which was scheduled for the day after my appointment with Dr. Evans.