A Few Good Causes

It's getting to be that time of year when there are lots of 5K and other runs, walks and various events happening.  As a casual runner, I've always liked doing these races, and usually do a couple a year.  I always did them more for the fun of it and as a motivation to reach some kind of running goal, but they always have some kind of charity tie-in which a portion of the entry fee goes to (and which the organizers encourage runners to vigorously fundraise for).

Of course, I now have a renewed interest in the charity tie-in part of all of these events, and there are many that benefit breast cancer groups.

One in particular is the 5K Revlon Run/Walk for Women which takes place in New York City every May.  I've actually done this race for the past 3 or 4 years.  At first, a friend and I ran it together, and then about two years ago, my office decided to get a team organized and we all did it together - some running and some walking - with outside-the-office friends joining too.  The race starts in Times Square and ends up in Central Park and I've always enjoyed running it (when else would the streets of Times Square be closed so I could run without fear of getting run over by a cab!).

Although the charity aspect was always secondary in my mind - really I was running it for fun and exercise - I always would get one of those "I'm running in remembrance of..." signs to pin to my back with my grandmother's name written in (she died of breast cancer when I was 2 years old).

This year, of course, it means so much more.  This year, when I registered, I checked the box to indicate that "I am a cancer survivor."  I never in a million years thought I'd ever have to check that box, but here I am.  I even debated in my mind of whether I really can be considered a survivor yet - after all, I haven't beaten cancer yet; I'm still fighting.  But there was no "I am fighting cancer" box to check and I figured I am a survivor so far, so I went ahead and checked the box.  This year, I'll need two signs to pin to my back - one for my grandmother, and one for my own fight.

The Revlon charity actually has even more meaning for me than just raising funds to fight breast cancer.  As regular readers of this blog know, I am on the drug Herceptin, a drug which has proven extremely effective against Her-2 positive breast cancer.  Back in the late 80's/early 90's when Herceptin was being developed, the drug company stopped its funding at one point, and the Revlon charity stepped in and provided initial funding to keep the research going. 

This drug is quite possibly saving my life as we speak, so supporting the charity the helped research continue suddenly has a whole new meaning for me.  Who knows what other drugs are in development now that my donation - however small - might help further along and save the lives of other cancer patients 5, 10, or 15 years from now?  So, I'll be participating this year with a whole new perspective.

And since taking part in this event this year has a whole new meaning not only for me, but for those that know and support me, my office decided to take it one step further this year.  Instead of merely organizing a team to take part in the Revlon Run/Walk this year, my co-worker Kristin had the great idea to do a happy hour fundraiser to help raise money for the charity!

It will take place from 6:30-9:30pm on Tuesday, April 20th, at Libation, a bar located on 137 Ludlow Street here in New York (between Rivington and Stanton Streets).  $40 at the door includes 3 hours of open bar and a donation to our team.  If you are in NYC, I invite you to come and bring friends - the more the merrier!  It will be a great night for a good cause.  And a huge thank you goes to Kristin for organizing it!

If you can't make it to the fundraiser but would still like to donate, you can do so by making a donation to my fundraising page here or to our "Hawkettes" team page here.

I've been truly humbled by how my fight with breast cancer has inspired friends to get involved too.  Two of my friends - Lori and Bernie - have decided to participate in the Avon Walk for Breast Cancer taking place in New York City in October.  This is no simple 5K - it's 39 miles over two days, and there is a substantial fundraising requirement that you have to commit to when you sign up. 

Lori and Bernie have started a team for the Avon Walk called Emily's Entourage.  Anyone who's interested in joining their team or making a donation can visit the team page here.

My sister and several of her friends in the Washington, DC, area, have also started an Emily's Entourage team for the Susan G. Komen Race for the Cure taking place in June in DC.  They're even getting Emily's Entourage t-shirts made!  Their fundraising page is here.

And my friend Dana is participating in the Susan G. Komen 3-Day for the Cure in Philadelphia.  She will be walking 60 miles over 3 days to raise money for breast cancer research.  Her page is here.  And Dana's sister Debbie who lives in Atlanta just signed up for the Atlanta Race for the Cure - we're blanketing the East Coast!

The fact that my friends are willing to make these commitments to run, walk and fundraise in my honor is truly amazing and means so much. I cannot possibly thank them enough!

Welcome Claire!

We interrupt our regularly scheduled cancer programming to bring you a much, much happier topic. 

On Friday, April 2, at 7:11pm my niece Claire Elizabeth was born!  She is 7lbs, 12oz. and is perfect.  Mother and baby are both doing well!

She was born with hair - the consensus is that porportionally speaking, Claire and I probably have about the same amount of hair.  Although I was looking forward to no longer being the one in the family with the least amount of hair, I've decided not to hold this against her.  It may have been a different story if she was born with more hair than me, though.

As I was picking out the "It's A Girl!" balloon to bring to my sister's hospital room, I asked my Mom if she's going to bring me an "It's A Boob!" balloon when I'm in the hospital for surgery.  I don't think I should hold my breath waiting for that one.  :)

Without further ado, here are some pictures:

Isn't she adorable?

Me with my new niece (and my relatively new hair).

Three Down

Last Wednesday was my third chemo session, and I was feeling pretty good leading up to it.  For the past couple of weeks I'd been trying to make more of an effort to eat healthy.  I typically am a pretty healthy eater (I'm a vegetarian and everything), but the funny thing about my cancer diagnosis is that I found myself eating out a lot.  Go figure.  My parents are obviously visiting a lot more often, and it's just easier to go out to eat rather than eat in my tiny (but lovable) apartment, and I've been going out a lot with friends too.  And when I wasn't going out to eat I was being kind of lazy about eating at home, just making something easy but not necessarily healthy.

But finally I decided it was time to get back on track, and I even tried out a new recipe in my Eating Well Through Cancer cookbook (black bean salad - pretty good).  Yes, there is such a thing as a "cancer cookbook," and I now own one.  It was sent to me by a nurse who works as part of a patient services program run by my insurance company.  Really, the recipes are just normal stuff anyone can eat, but they're divided into chapters that address how you may want or need to eat depending on your treatment - for example, if you have neutropenia (low white blood cell count, which can happen on chemo), you are not supposed to eat raw fruits, vegetables, meats and seafood because they can be harbingers of bacteria which you might not be able to fight off.  So the recipes in that chapter are all good things to eat if you have neutropenia, but really can be eaten at any time.

Anyway, I was getting my healthy eating back on track and I even took advantage of the spring weather last weekend and went for a 3+ mile run along my usual route in Hoboken which takes me along the water with beautiful views of the Manhattan skyline.  It was the first time I'd really worked out since my diagnosis, and even though it wasn't the fastest I've ever run, it felt pretty good.

My re-focused effort on being healthy paid off as I was down a pound when they weighed me during vitals.  Woohoo!

Then it was time to see Dr. Sara.  I was looking forward to my appointment because I was hoping I'd get a better idea of how much further I need to go with the chemo.  I've been wondering about this because before treatment started, he said I would need between 4 and 6 treatments, depending on how things were going. On the one hand, I speculated that I might only need 4 since things were going so well, but on the other hand part of me figured that if the tumor was shrinking but not completely gone after 4, he might give me more to try to completely get rid of the tumor since I've been tolerating the chemo so well.

I've been very aware of the fact that I can still feel a denseness in my breast - it is not nearly as big as it was before this whole thing started, but it's still there.  So I've been telling myself that "it's not all gone yet" and I shouldn't get too ahead of myself.  When Dr. Sara examined me, he explained that when the chemo destroys the cancer, it is not normal breast tissue that returns - it gets replaced with scar tissue, which is more dense than normal breast tissue.  So, it's possible that what I am feeling is scar tissue!  (Or at least part of it may be.)  That made me feel good because I was convinced that any denseness meant the cancer is still there, and that might not necessarily be the case.

We won't know for sure until I have a bunch of tests after my next chemo.  My next treatment is scheduled for April 14th.  Two weeks after that - April 28th - I am scheduled for a breast MRI and PET/CT scans, which will tell not only how much - if any - cancer remains in my breast, but also in my liver.  About a week after my tests I will go back to Dr. Sara for the results, and that is when I will find out if I need more chemo or if I'm ready for surgery.  Let me tell you, I will have that day circled in red on my calendar!

After my exam, I settled into the infusion suite.  There were some technical difficulties in getting my IV started - as per usual, the nurse first put it in the side of my wrist, but for some reason no blood was coming out (my Mom joked that I must have left all my blood at home).  So the nurse had to take out the IV and put in a new one in the back of my hand.  Really, I think it was just a desperate attempt by the needle stick gods to try to up their count - they must have noticed that boob flashes are really starting to run away with the lead so they were trying to do anything they could to keep it a tight race.  A futile attempt though, as there were three boob flashes that same day!  Needle sticks just can't seem to gain any ground, I guess.

Once the IV was up and running, Quincy came over for a visit.  Turns out he has his own card - like a baseball card, but for a dog!  Check it out:

Isn't he cute?

Decisions, Decisions

This week was the first week since this whole thing began that I haven't had any doctor's appointments, tests or treatments. Luckily the weather cooperated and brought with it some beautiful spring temperatures!

However, I did end up seeing a couple of my doctors anyway, as Dr. Rosenbaum Smith (my breast surgeon), Dr. Samson (my plastic surgeon), and Karen Ott (the genetic counselor that I saw) all spoke on a panel discussion that I attended this week, along with two breast cancer survivors.

The topic focused on assessing women's (and men's for that matter) risk of getting breast cancer, not only for those who do not have a history of the disease, but also for breast cancer survivors assessing their risk of a recurrance.

Granted much of the information discussed, especially as it relates to genetic testing, was stuff I already knew.  But the panel discussion did give me a lot to think about as I ponder the single vs. double mastectomy decision.

In fact, the very first topic raised at the panel discussion was about a recent article that appeared on NYTimes.com about this very subject.  You can check it out here.  Dr. Rosenbaum Smith said that she thought it was a pretty good article.

One of the key things I learned from the panel discussion and this article is that removing a healthy breast after a cancer diagnosis does not really have an impact on survival.  Since I now have a history of breast cancer, I will be closely watched and tested every year.  Therefore, presumably, any cancer that develops in my left breast would likely be caught very early and treated before it has a chance to spread and become life-threatening.

Also, any future cancer in my left breast would almost certainly be unrelated to the cancer in my right, as it's very rare for cancer to spread from one breast to the other.  In fact, I should really be more concerned about the cancer that I do have spreading than I should be about a second cancer developing in my left breast.

My chances of getting a second breast cancer are slightly higher since I have a history of the disease, but are not as high as it would be if I had tested positive for the mutated BRCA1 or BRCA2 genes.  The risk for developing a second cancer is about 40-60% for gene-positive survivors, and Dr. Rosenbaum Smith said she thought the risk for gene-negative survivors (like me) was about 20%.

In addition, removing the healthy breast does not 100% guarantee that breast cancer won't develop, although it does reduce the risk to about 1-3%.

Boob Shopping

On Tuesday, I had my first consultation with the plastic surgeon, Dr. Samson.  This was where I would learn about the various options for breast reconstruction after my mastectomy.

I knew this was going to be an interesting experience right from the start when one of the forms they gave me to fill out in the waiting room was a photo release!  Eeks.

Sure enough, after they called me, Dr. Samson's physician assistant took my patient history and then asked me to change into a hospital gown (from waist up only, thankfully).  After a few minutes she came back and that's when the photo shoot began.  I had to stand in front of a wall with a black curtain while she photographed me with a digital camera from every angle (8 shots in all).  Every patient is photographed, for "before and after" comparison purposes, and they don't include any identifying features (i.e. the shots are taken from the neck down).

This was actually the second time I was photograhed, as Dr. Sara had taken a couple photos before my first treatment so they could compare my progress with how I started.  Of course, I completely trust my doctors and everything was entirely professional, but it's still a little unnerving to know those photos exist!  I just hope I never see them on the Internet...

After the photo shoot, Dr. Samson came in and introduced himself and then did a physical exam.  First he took some measurements, calling out the numbers while the PA wrote them on my chart.  Then he did the typical breast exam, which I'm pretty used to by now.  And then he started pinching my belly.  I knew this would probably happen because I knew beforehand that one of the reconstruction options is a surgery where they take fat from your belly and make a boob out of it, so I figured he would have to examine my abdomen to try to assess how much fat I have there.  But still, this was one of those times when I had to step out of my own body for a minute because if I concentrated too much on what was happening, I would probably burst out laughing.

He also examined my back, pinching my back fat to see how much was there, since that's another "donor site" they can use to get fat for the reconstuction.

Second Chemo Day and Another New Hairdo

Wednesday brought my second chemo day - two down, and two (maybe more) to go.

The day started off with the pace of my hair loss picking up... I noticed that I lost considerably more hair during my shower than I had since the hair loss started on Sunday, but it was still not noticeable, luckily.  But in order to put off my impending baldness as long as possible, I decided not to try to dry or style it at all, since every time I touch my hair a bunch comes out.

So I made my way to the hospital with my brittle, falling-out hair standing every which way.  My parents met me at the hospital and after vitals we waited for the doctor's exam.

Once again, Dr. Sara was very pleased with how I am progressing.  He is still noticing changes to the tumor in my breast, even just since last week.  My Dad asked him how he thinks my progress is measuring up to what he could have expected before treatment started, and the doctor said, "It's the best I could have hoped for."  I could not ask for anything more than that!  It makes me think that all of the thougthts and prayers that my family, friends and even people I don't know have been saying for me are being heard!

While I'm overjoyed that the chemo is clearly affecting the tumor in my breast, I've been more concerned about that little spot on my liver, since that is not something we can see or feel.  So I said to the doctor that I hope the chemo is fighting the cancer in my liver just as much as it's obviously fighting the cancer in my breast.  He said not to worry about that, because it IS - it is the same cancer, so there is no reason why it wouldn't have the same effect on the liver as it's having on the breast.  And then Dr. Sara said that he bet if we did a CT scan of my liver that day, they wouldn't find anything.  Can you believe it?!  I was so relieved to hear this.  Of course, I will be even more relieved when it comes time for the CT results, but I 100% trust Dr. Sara and if he believes the cancer is probably gone from my liver, than I believe it too.

After this good news, I made myself comfortable in my recliner in the infusion suite to prepare for treatment.  I had told Dr. Sara about the effect that the Benedryl had on me the first time - the restless leg syndrome coupled with the drowsiness, which was a most annoying combination because the drowsiness made me want to sleep, but I couldn't relax because of the restless leg syndrome.  So, he precribed an alternate anti-histimine called Atarax as part of my pre-meds.  Luckily, I had no side effects to this new drug - whew!  But a little part of me was worried that it might not be as effective... what if it didn't ward off the possible allergic reaction I could have to the Taxotere, which I escaped the first time, but was still at risk for the second time?  I would have to wait to find out.

After my pre-meds, the nurse started the Herceptin drip - only 30 minutes.  She told me that even though it was only 30 minutes, I'd still be getting the same amount in total that I'd received over the previous three "Herceptin Wednesday" sessions, so it was going in much faster, and to call her if I felt any discomfort at the IV site (back in the side of my wrist this time).  But luckily, I didn't feel anything unusual.

It's Starting...

I knew it was coming and yesterday it happened... my hair is starting to fall out.

The chemo drugs kill cells that divide rapidly, which is one of the main characteristics of cancer cells, but it can't tell the difference between healthy and unhealthy cells.  So, it also ends up killing healthy cells that divide rapidly, like those that make up hair follicles.

My Chemotherapy and You book says that hair loss starts 2 to 3 weeks after the first treatment (it has been 2.5 weeks) and that when it starts it can be either a little at a time or in clumps.  Luckily, my hair seems to be taking the "little at a time" route.

I first noticed it in the shower... when I ran my hands through my hair, my hands were covered in strands, and by the end of my shower there was about 5 times more hair in the drain than normal.  Of course it was upsetting, but I didn't scream or freak out.  Instead, I was almost afraid to wash my hair for fear that the more I touched my hair, the more that would come out, and I needed my hair for at least one more day because I didn't yet have a wig! 

I didn't need to worry about going completely bald right then and there, though, because while I did lose a lot more than usual during my shower, my hair still looks the same - you can't tell that I've lost any (yet).  I'm not sure if this is because my hair decided to take the slow route out or if it's because my hair is really thick, so losing a bunch is less noticeable, but either way I am glad!

The book also said that my scalp may hurt at first, before my hair starts falling out. The day before, I started to notice that when I touched my hair, it felt a little stiff at the root - like when you first take out the rubberband after your hair has been in a tight ponytail for awhile. It still feels like this and it's been a little itchy the last few days too.

This morning, I lost about the same amount in the shower as I did yesterday, but it's still not noticeable.  My book says that it "takes about 1 week for all your hair to fall out."  So we will see...

Coincidentally, the day that I started losing my hair turned out to be the same day that I was going wig shopping!

My friend Amanda picked me up and we drove into the city, parked, and walked a block or so to Macy's Herald Square.  Yes, Macy's.  No, I had no idea they had wigs either, but they do.

We took the rickety wooden escalators all the way up to the 9th floor where after walking through the furniture department and, oddly enough, a display of electric razors, we found the Wig Salon.

The lady told us to look around, pick out a few we liked, and then she would help me try them on.  It was like picking out shoes!  She told us to look for the styles we liked, and not necessarily the color, since most of the wigs came in several colors.  I had been advised to get a synthetic wig (as opposed to human hair) because they are not as hot (and as a bonus, usually less expensive), and I was also told to look for "monofilament."  This means that the top of the wig is made with a material that resembles scalp, so that it looks more natural through the part.

I was a little disappointed that all the wigs were pretty normal-looking, and there weren't any funky Lady Gaga-type ones to try for fun, but Amanda and I found a few we liked.

First, I had to have a wig cap put on, to hold my hair in place (obviously I won't need this when I am bald).  And then the trying on started!

 
This one was cute, but Amanda thought it made me look older than I am, so it was vetoed.