Sad/Happy

This blog post starts off on a somber note.  On March 29th, my Uncle Bob passed away of cancer at the age of 59.  He was diagnosed with cancer of the bile ducts in late January.  A mere two months later, he was gone.  He is missed by his many friends and family.

Besides being yet another blow - the worst one yet over the last year - to my family, it was also a stark reminder of how cruel, ruthless and unforgiving this disease can be.

Besides being sad for the loss of my uncle, and for my Dad, who lost his younger brother, inevitably it also makes me think about my own cancer diagnosis.  And while there may have been a shred of comfort in the fact that my uncle had a very rare kind of cancer that I do not have; cancer is still cancer. 

And then two days later I found out that the woman who runs the community programs at my breast surgeon's office passed away of breast cancer.  So there goes that shred of comfort.

As evidenced by my last few blog posts, I've been doing fine over the last few months with no side effects to speak of.  In a lot of ways, I live my normal life, with just a few more doctor's appointments and treatments than my fellow 32-year-olds.  And while the fact that I have cancer is always with me - always there when I wake up in the morning and constantly in my thoughts - I've learned to live with it.

But then something like two cancer deaths in one week kind of throws you for a loop and reminds you that this cancer thing is SERIOUS BUSINESS.  It really sucks, to put it bluntly.

In other news, on March 23rd I had my last chemo treatment, i.e. my last Navelbine treatment.  I didn't even know until I showed up that day that it would be my last Navelbine, but Dr. Sara said that it had been six months, and so he was taking me off the chemo drug.

However, I will stay on Herceptin for another 6 months, maybe more.  As he's said before, my case does not fit into any of the "neat categories" of cancer diagnoses.  Typically, when someone is diagnosed with Her-2 positive cancer, they are on Herceptin for one year.  The reason for the "one year" is simply because that's the length of time they have research on.  It could be that less than one year provides the same effectiveness; it could be that more than 1 year provides longer-term effectiveness.  We simply don't know because the drug hasn't been around 25, 30 years to know the long-term benefits.

Now, in cases where patients have active metastatic disease (i.e. the cancer has spread to other parts of the body and is still active in those other parts), their Herceptin treatment is determined by how the active tumors are responding.  If they keep shrinking on the Herceptin, they stay on it; if not, they may be taken off the drug.

Of course, MUGA scans are the other determining factor in treatment length, as someone whose heart muscle is being weakened by the drug will be taken off it, at least temporarily until heart strength is regained.

However, I don't fit into any of these categories.  Yes, I have metastatic disease, but it's not active (at least we don't think it is... more on that later).  So what to do?

Well, Dr. Sara says that there is really no reason to take me off the Herceptin.  It's a relatively quick treatment and doesn't have any side effects (except for the heart muscle thing which has not affected me), so why not keep me on it?

My response to this is:  Fine by me!  I will gladly get Herceptin for the rest of my life if there's even a shred of a chance it's keeping me from a recurrence.

So, now that my chemo is complete, this means it's time for another PET/CT scan.  Although all evidence of "active cancer" has presumably been eradicated from my body - the active cancer in my breast, lymph nodes and liver removed by surgery; the active cancer in my spine already showing as healed when it was discovered, and then also treated with some "insurance" radiation - we won't really know how things look until my next scan.

It's not my liver or spine that Dr. Sara is necessarily worried about... it's the fact that I had 8 out of 11 lymph nodes still affected after surgery.  This tells him that my cancer is a cancer that likes to move.  So the danger is not necessarily that it will start growing again in places where it's already "landed," but that it will show up in new places.

My scans are set for this Tuesday, and I will get the results the next day, on Wednesday.

I am pretty optimistic that my scans will be clear, but I also remember that last time my results suprised us all when those two little spots on my spine were discovered.  So you never know.

Now, besides getting scanned again, the end of chemo also means the beginning of radiation.  This Friday, I will be going for my radiation "planning" session, where I will be getting more tattoos and will find out more about this next stage of treatment.

As part of my "day of tests" on Tuesday, I will also be getting an MRI of my spine as a follow-up to my spine radiation last fall, so hopefully it will show what we expect - that the combination of chemo and spine radiation has fully healed those two little spots on my backbone.

On top of all of this, it's also time for my 3-month checkup with Dr. Rosenbaum Smith, which is also set for Wednesday, just before my "results show" appointment with Dr. Sara.

Whew - it will be a busy week!

OK, time for some comic relief.  First, as you may remember my friend Amanda's comment over a year ago about how many Mardi Gras beads she will need to give me thanks to all of my "boob flashes" inspired my little sidebar tallying both the boob flashes and needle sticks.

Well, true to her word, sure enough a couple weeks ago she presented me with a string of beads for every boob flash I've had over the last year - 112.  In case you're wondering, here's what 112 Mardi Gras beads look like!

Haha - thank you Amanda!

Now, secondly, while this is totally not cancer-related in the least, last Saturday, April 2nd was my niece Claire's 1st birthday!

Here is a picture of Claire and me on her big day:

And here's another picture of Claire in her party dress:

I think my sister Sara put it perfectly when she said that Claire is "our sunbeam in this cloudy, cloudy world." 

Happy Birthday to sweet Claire!

Keep on Keeping on...

Things are still going smoothly with treatment - with just about one more month of chemo to go, I STILL have no side effects and still feel perfectly fine.

In fact, a few weeks ago I finally mustered the courage to go back to the gym.  It was not nearly as scary as I thought it might be.  My two favorite forms of exercise are running and kickboxing (I belong to a kickboxing gym), and to get back into shape I decided to start with running.  I didn't know exactly what to expect since it had been about year since I'd done any kind of exercising to speak of.

So, even though in the past the minimum run I would do would be about 3 miles, this time I told myself to try to make it to just 20 minutes, and to go as slow as I needed to.  I made it to 20 minutes, and it felt great.  It wasn't nearly as hard as I thought it would be, and it felt really good to be running again.

The next hurdle will be taking a kickboxing class - they are pretty intense so I'm going to give myself a little more time on the treadmill to build up my stamina, but I'm looking forward to the day when I can get back to the bag.  I can see myself picturing the word "cancer" on the punching bag and I think that will give me the motivation I need to hit as hard as I can!

A couple weeks ago I had a routine MUGA scan - this is the test that measures the strength of my heart muscle, to ensure that the Herceptin is not negatively affecting my heart (since weakening the heart muscle is a side effect of the drug).  The test went the same as always.  My techician was Igor, who when he introduced himself said, "My name is Igor - it sounds scary but really I'm a nice guy" - ha!

For some reason for this test he could not use my port, so he drew blood from my arm.  Then, I waited about 45 minutes while my blood was being treated with some kind of radioactive substance, and then the blood was put back in me and I was under the scanning machine for about 30 minutes.

I got the results the following week when I saw Dr. Sara, and they were just fine.  He said my MUGA result was a 68 - meaning my heart pumps 68% of the blood up into the aorta.  Anything greater than 50 is normal, so that is good!  Not that I was worried.  Especially after I'd started running and didn't feel abnormally winded or anything I figured my heart was working just fine.

Mom has been doing well in her fight too.  She started radiation last week, and now goes every morning.  The treatment itself takes only 6 minutes.  Before she started Dr. Sara reminded her that radiation can cause fatigue and to take it easy if she starts feeling more tired than usual.  He said not to use me as an example of side effects since I am the exception to the rule when it comes to side effects these days!

So, as I said I have about another month to go on this chemo.  Let's hope my streak of no side effects keeps up.  I have also been lucky enough to have not gotten sick - meaning no flu, no stomach virus, not even a cold - since my diagnosis, despite the fact that chemo makes you more susceptible to infection.  So here's hoping I can keep that streak going too!

Status Quo

Ok it's been awhile since my last post but I have a good reason... I was on vacation!  (Well, not for the whole time - only for a week, but still.)  I went to the Caribbean, where it was sunny and warm and where there was NO SNOW!  Here is picture of me in St. Lucia:

It was really nice to just relax for a week and soak up the sun (of course I was very diligent about putting lots of suncreen on my scars).  But all good things must come to an end so after my week it was back to reality...

Luckily things are still status quo with my treatment.  After four months of chemo, I have still not experienced any side effects - my blood counts have been good every week and I don't have any of the numbness or tingling in my fingers or toes which is a common side effect of the drug I am on.  Dr. Sara said that he tends to prescribe Navelbine (my current chemo drug) a lot - more than his colleagues - and he's very pleased that I haven't had any side effects and that we haven't had to pause treatment even once to wait for my counts to come back - especially since I am getting a full dose; no baby chemo doses here!

I also passed the one-year mark of the day that I was diagnosed: January 14th.  Coincidentally, I spent part of the day getting a mammogram, as it was time for my yearly screening and my 3-month checkup with Dr. Rosenbaum Smith.  The mammogram was only of the left side, since you can't mammo a tissue expander, which I of course still have on the right side.  My mammo was 100% clean, so that was great to hear!  Dr. Rosenbaum Smith said everything looks good.  I will go back in 3 months for my next checkup.

My Mom and I actually had mother-daughter breast surgeon appointments that day since she had her follow-up with Dr. Rosenbaum Smith too.  Things are going well with her treatment as well - she did have to go in for a follow-up surgery because the pathology results from the first surgery showed a margin that was a little too close for comfort.  But the second surgery went smoothly and the margins were clean.  Now she is waiting a few weeks for it to heal completely before starting radiation.

I also had a follow-up appointment with Dr. Evans, my radiation oncologist, this week.  He said that everything looks good, and that it is time for me to have a PET/CT and MRI of the spine soon, as a follow-up to the radiation I had in September.  I did have a bone scan back in December that was clean, but since it was the PET/CT that first detected the spots on my spine, that test should be even more definitive.  Since I still have 2 more months of chemo, I will have the tests after my last treatment in order to get the best and most accurate result.

I am still on schedule to have radiation to the breast after chemo, and Dr. Evans said that I will need to wait 4-6 weeks after my last chemo treatment before my first radiation treatment can begin.  This is just to make sure that all of the chemo is out of my system.  So, it's looking like radiation won't start until the end of May/beginning of June, and will last for 6-7 weeks.  Then, I will have to wait about 3 months for the area to fully heal before I can have my follow-up reconstructive surgery to get the tissue expander removed and the implant put in.

So I still have several months of treatment ahead of me, followed by more reconstruction, but things are going well and I can't really ask for more than that!

Really, World?

This world is unpredictable.  No one can argue that.  Almost one year ago, I could never have predicted that at the age of 31 I would be diagnosed with advanced breast cancer and spend a good chunk of 2010 in various doctors' offices, in the infusion suite, in hospital beds recovering from not one but two surgeries, and even a stint on the radiation table.

But even after all of that happened, still, I couldn't predict what would come next: my Mom was diagnosed with breast cancer too.  I'll give you a second to let that sink in.

Are you back?  OK, good.  Yes of course I am totally serious because who in their right mind would joke about a thing like this.

The good news is that thanks to regular mammograms, it was caught super early (stage 1) and her prognosis is very, very good.  The "suspicious tissue" was found on her annual routine mammogram and she was advised to get a sonogram for further testing.  The sonogram results led the docs to advise a biopsy, and that is when she called Dr. Rosenbaum Smith's office.

She got in right away and Dr. RS was even able to arrange for her biopsy to take place that afternoon right after her appointment.  Results came back two days later: cancer.  I was actually walking out of the hospital after my own chemo treatment when I called my Mom to tell her how it went (fine, as always) and that's when she told me.  It was two days before Christmas, which also happens to be my Mom's birthday.

Less than two weeks later, she had an out-patient lumpectomy which went very well.  Her lymph nodes were removed and examined and initial tests showed no signs of cancer (i.e. no signs that it had spread beyond the breast).  Next step: radiation.  She will probably be done with her radiation before I even start mine!

Of course, it came as a shock to our family, but knowing it was caught so early (her spot was 4mm, vs. the 5cm+ mine was) and that she had a tried and tested team behind her made the blow a little easier to take.

Also, Dr. RS does not think that our cases are related at all - she thinks we are just having a crappy year.  Remember, only 7-10% of all cancers are hereditary, which means 90% or more are totally random.  If I had tested positive for one of the known breast cancer genes, then of course it might be hereditary, but I didn't.  Of course, as we've known all along there's a chance that we have some breast cancer gene that hasn't been discovered yet, but there's obviously no way to know that now.

It's funny, but I think that my Mom being diagnosed would have been a lot scarier if I hadn't gone through what I have this past year.  For one, we all know a whole hell of a lot more about breast cancer than we did a year ago, so we all came to it with a base of knowledge.  Secondly, as I said, there was none of the stress about which doctor to call and where she would get treated - we knew exactly who to call.  I've said it before but it bears repeating: I feel so lucky that I have the medical team behind me that I do, and that I'm being treated in a "one stop shop" place so my doctors all communicate with each other and know the latest on my case before I even see them.

In fact, when I saw Dr. Sara a week after my Mom's diagnosis, he already knew.  He was very reassuring and even praised the radiologist who caught it on the mammogram, since he said something that small is easy to miss.  My Mom actually has an appointment with him next week, since she will probalby need to go on a drug post-treatment to help prevent a recurrence (and also to verify the no-chemo recommendation once we get all test results back from her surgery).

Luckily, this news didn't put too much of a damper on the holiday, and we had a great Christmas with 9-month old Claire.  Here's a picture of me, my Mom and Claire on Christmas Day:

Meanwhile, my treatment is going great.  At my last appointment, Dr. Sara said he is really very pleased that three months in (about halfway through chemo), I STILL have no side effects - no neuropathy, no nothing.  He is also very pleased that my blood counts have remained good, so we haven't had to have any breaks in treatment to let my counts return to normal.

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!  :)