CultureJunkie

Happy Mother's Day

Happy Mother's Day to my Mom, who has been my biggest champion (and caregiver) throughout this ordeal. And she's a breast cancer survivor herself!

Round 6

I have now completed 6 of 8 chemotherapy treatments; the end is finally in sight!

The Taxol is proving to be much easier to tolerate than the previous A/C treatments were. I had a rocky start with it last week when it caused terrible neuropathy in my fingers and toes (painful, discolored nails with numbness/tingling in the pads of the fingers) along with joint pain in my ankles, knees, and lower back. But I got a prescription for Neurontin which has all but eliminated those problems (just some lingering soreness in the nails and the ever-present fatigue), and last Saturday night was the first time since this all started that I actually slept through the night.

Which meant that I was feeling good last Sunday when we celebrated my Mom's 79th birthday (via a surprise party at a friend's house) and my Dad's 83rd birthday today.

I also ditched Kristen Wiig for most of this week and wore an assortment of beautiful head scarves in memory of an amazing woman who lost her battle with ovarian cancer one year ago. I was in awe of her grace, humor, and strength then, even when I couldn't personally relate to what she was going through, and I remember it as even more amazing now that I have first hand experience with chemo and all that it entails.

But as I said, the end (hopefully) of my fight is in sight, and I have surgery (lumpectomy & lymph node removal) tentatively scheduled for mid June. Not looking forward to that (I have to be awake for the initial biopsy part!!) but hopefully by July the toughest part will be behind me.

 

 

 

Round 5

 

Yesterday I completed Round 5 of chemotherapy. It went well, but it was a really long day at MGH, starting with bloodwork at 9:30, meeting with the nurse practitioner to review my lab work at 10 (white blood count was good this time, but red blood count was low, leading to anemia which explains the severe exhaustion and under eye circles I had all last week!). But I got the go-ahead for chemo anyway, and that started at 11. It took about 5 and a half hours all in because with this new drug - Taxol - you have to start with some pre-infusions including saline to prep the veins, Decadron which is used to treat cancer, and Benadryl to prevent a reaction that some people have to the Taxol (red face, itchy throat, and severe lower back pain...thankfully, I didn't experience this). I did fall asleep within about 10 minutes of the Benadryl hitting my bloodstream, however, so I was out of it for the 3-hour Taxol infusion that followed. Aside from being a bit groggy when we left, it was much easier than previous treatments, without the sick hangover feeling.

With just 3 more infusions over the next 7 weeks, the end of chemo is now in sight. But I have to say, the anxiety about my treatment outcomes is growing now as well. It's easy in the beginning to sort of coast along, joining the ranks of the nearly 300K cases of breast cancer in the US this year, follow doctor's orders, and assume you'll "beat" it. It's a difficult diagnosis to swallow of course, but when you're getting treatment at one of the best facilities in the world, with tons of experience and well-established protocols, it's easy to imagine this will just but one tough year out of your life and then things will go back to normal. Until you're in the thick of it.

I'm now 3 months into this journey, and this is what I've learned so far:

• No two cases of breast cancer are alike. Women get it for different reasons, detect it at different times, get varying treatment protocols, and respond differently to them. While there's no shortage of fellow patients and survivors to talk to in person and online, and while it can be comforting to know you're not alone in this, it can be challenging - and even misleading - as well, because their experiences won't necessarily predict your own.
• Information is a double-edged sword. Some stories and data can give you hope, while others just cause unneeded stress. Earlier this week I looked up breast cancer survival rates because someone had asked and I didn't know the answer. I assumed they were high, again because it seems like so many people get this and beat it, and I was shocked at what I found: for Stage IIIB cancer, which is what I have (yes, my original Stage II diagnosis was changed after subsequent testing found a fair amount in my lymph nodes), the 5-year survival rate is only 41%. This is why I don't like to read up on the topic, people! But in all seriosness, it's important to note that the 5-year survival rate (the percenage of people who live at least 5 years beyond diagnosis) is based on people who were treated at least 5 years ago. Improvements in treatment since then can mean more favorable outcomes now, and many people live much longer than 5 years out. More importantly, these numbers don't take into account that some of the deaths are from causes other than breast cancer. That said, survival rates cannot really predict what will happen in any one person's case. It reminds me of an article someone shared early on that discusses all the numbers and choices that cancer patients need to face (and offers up a good reminder: "The 'median survival' number is not fate. It is simply a middle point. Let’s say a doctor tells you that the median survival for your type of cancer is one year. That means half of the patients lived less than 1 year. But half lived longer. Shoot to be part of the latter group."
• You really just have to take things one day at a time. I'm a planner and researcher by nature, but I've found that for my own sanity I've had to cede control on this one, trust that my treatment will work, and just tackle things one day at a time. There are no exact, prescriptive cures for this - it's a lot of trial and error, often with strange side effects and reactions that no one could predict and sometimes can't solve. So you just have to do your best and hope that it all works out in the end.

But for now I'm just looking forward to some nausea free weeks...it's nice to have my appetite back!

 

Round 4

Hooray! Yesterday marked the halfway point in my chemo treatment, and my last encounter with the Red Devil (Adriamycin, the potent red drug that causes the worst of the side effects) and it's partner-in-crime, Cytoxin. But they seem to have done their job because my tumor feels smaller and softer (fingers crossed). The next four rounds consist of a single drug, Taxol, which is apparently easier to tolerate (less nausea) but is coupled with Benadryl so there is some fatigue.

After a stressful start yesterday (a mix up in appointment times had us scrambling to get over there before my oncologist boarded a plane, and then we had some difficulty locating a good vein for the infusion), I ended up pretty well. So far the worst of it has been crazy dark circles under my eyes, which can happen when the infusion floods your veins and causes tiny capillaries to burst, leaking blood under the skin. Just like a bruise, actually, and apparently it can happen all over your body but you only see it under the eyes, where the skin is thinnest.

And speaking of eyes, I had a great week last week - no real side effects beyond fatigue and a runny nose - and I still have my eyelashes and eyebrows (although they said the Taxol my take off the rest of 'em!). So to celebrate, my friend Maria and I did a girlie outing to Saks and had our makeup done at the Trish McEvoy counter (something I'd never done before).

Here's Julie working her magic...

...and the end result:

And a very happy shopper! Until I ran out of steam two hours later :)

Also, I've been keeping a photo diary of my journey thus far - everything from the beautiful to the bizarre - right here.

Success!

I am happy to report that I was able to bounce back from last week's ailments and proceed with Round 3 of chemo today. Hooray!

I actually felt great the last couple of days - it's been 3 weeks since my last infusion and nearly all the side effects have subsided (for now; I'm sure they'll be back in full swing by Sunday).

That, coupled with the 70+ degree weather we've been enjoying in Boston, made me feel more energized than I have in weeks. I even took advantage of the Howard Ulfelder, MD, Healing Garden on the roofop of the MGH Cancer Center today - a quiet oasis of plants, flowers, running water, and sunshine overlooking the Charles River. It's still a bit dormant from the winter season, but beautiful nonetheless.

The Healing Garden is designed to provide a brief respite from the stress and activity of the clinical environment, a place to meditate or just enjoy the quiet and fresh air. There's an indoor pavilion as well, so that it may be used year-round.

It's a very inspirational place: patient success stories line the walls, along with Hope Flags created by children in the nearby pediatric oncology center...

...a big pot of Touch Stones are there for the taking...

...and a guest book full of personal sentiments from other visitors to flip through/add to...

So, I'm feeling good after treatment, inspired by the weather and surroundings, and enjoying one more bit of information that made this a better week: I got the results back from the BRCA genetic test and they were negative! Meaning my cancer is not hereditary, and I don't have to worry about a higher likelihood (40%-60% chance for those with the gene mutation) that the cancer will come back. And at the risk of TMI: the tumor feels softer, so we think the chemo may be working. Fingers crossed.

Three down; five to go!

A Temporary Setback

Yesterday was supposed to be round 3 of chemo, but I had a temporary setback.

I had been pretty sick all week, not with the typical nausea as expected, but with an assortment of other issues that made it difficult to function. Among them: headaches, mouth sores, bloody/runny nose,  and burning, watery eyes. The latter is because the chemo has dried out my eyes so much that my body overproduced tears in an effort to moisten them. Weird.

But the worst of it was when I had my lab work done yesterday, it was determined that my white blood count was too low to have the scheduled chemotherapy. So I'm  now on antibiotics, and have to go back in next Friday, when hopefully my counts are back to normal.

But there were some bright spots this week - namely all the wonderful care packages I received from some great friends - full of yummy snacks, fun trinkets, beauty products, and reading materials. Thank you, everyone!

And in other news (not cancer-related, but certainly health-related, and more in line with the typical pre-cancer CultureJunkie posts):

My office overlooks a dry dock in Marine Industrial Park (check out this cool New York Times article from 1905 about its launch) where ships are docked for months on end while they get repairs/paint jobs/overhauls.

This past week we saw its newest resident pull in: the US Naval Ship Comfort, a non-commissioned ship owned by the U.S. Navy and crewed by civilians from the Military Sealift Command (MSC).

It was originally built in California in 1976 as an oil tanker, and then deployed to the Navy in 1987 to serve as a 1,000-bed hospital ship, providing emergency, on-site care for U.S. combatant forces deployed in war or other operations. She has served in the Gulf War, responded to the terrorist attacks at the World Trade Center, supported Operation Iraqi Freedom, and assisted in the recovery efforts after Hurricane Katrina and the Haitian earthquake. The ship and her crew do not carry any offensive weapons per the Geneva Conventions, and firing upon her would be considered a war crime as she only carries weapons for self-defense. 

 Cool, huh?

Hello, Kristen Wiig!

Yesterday was a tough day.

My hair started falling out this past weekend, but yesterday it was coming out in fistfuls. Not only was it difficult to look at, but it was incredibly hard to clean up after, and it physically hurt. My scalp (all my hair follicles, actually) throbbed and I felt achy all over, sort of flu-like. Ah, the joys of chemo!

I already had an appointment to get it buzzed, but that wasn't until tonight, and I didn't think I could stand it for another 24 hours. So I went across the street and had them take off what was left. The poor stylist - I'm pretty sure it was the first time she'd had such a request, and she was nervous about shaving my tender scalp (let's face it: it hasn't seen the light of day in 40 years, so it's pretty delicate!).

Voilà

As you can see, my brows and lashes are still hanging on, although they do seem sparser. I can deal with losing the former (easy to pencil in) but thoughts of losing my dear lashes make me sad :(

I went back into work today, again sporting my trusty turban (these ones are the best), but anxious to ditch it after wearing it for the last three days.

Enter Kristen Wiig.

I had my final fitting with my new best friend tonight, to adjust for the smooth noggin, thin out the bang area, and have a lesson in how to wash her. Yes, I actually stood at a salon sink and learned how to shampoo, condition, comb out, and dry Kristen Wiig! Too funny.

And then came the real test. If you were in Boston today, you know that it was insanely windy. I was terrified of stepping out onto Newbury Street, with all those perfectly coiffed ladies (it's the Burberry end of the street, not the Newbury Comics end!) and having to chase poor Kristen Wiig down the sidewalk after she blew off my head. But she didn't!

And here she is in all her glory:

What do you think?

Round 2

Yesterday I had my second round of chemotheraphy. Two down, six more to go!

A lot of people have inquired about what "getting chemo" is all about, so here's what the day entails:

First, I get blood work to make sure my blood counts are in order. Chemo can lower your white blood cells (which fight infections), red blood cells (which circulate oxygen), and platelets (which help with clotting). Since you need those to stay healthy, it's important to make sure they aren't dipping too low.

The staff in the MGH blood lab is the warmest, most compassionate bunch...full of hugs and kind words. Even the elderly man who volunteers with the food cart, dispensing complimentary apple juice and Lorna Doones, is a ray of light. He remarked to my father, pointing to my mother and me, "How'd you ever get so lucky...you've got two beautiful women when most would be happy to have one!" To which my quick-witted Dad replied, "that's nothing...I have 10 more at home!" He's two months shy of 83 I should add...always keeping us laughing. 

Next I have a brief meeting with my oncologist or his nurse, to review my blood work. The great news this week is that my counts were off the chart and "you'd never know I'd had chemo!"

Last, I go down to the Infusion lab where I sit in a private room for about 3 hours and get two different chemo drugs injected via an IV in my wrist. This is what the room looks like:

And this is the contraption I'm hooked up to:

Now with the first round, I felt great the day of, and even the following day. It wasn't until Sunday that I started experiencing an assortment of well-documented side affects, including insomnia, night sweats, mild nausea, loss of appetite, dry mouth, fatigue etc. Annoying, but manageable. And then by the second week I actually felt pretty normal - my appetite came back, I just continued to tire easily.

Yesterday's session didn't go quite as well. They gave me an extra drug in the IV that I didn't have last time and it gave me a violent headache and nausea as soon as I got up from the bed. So I was out of commission all last night. But today I am feeling better...except that my hair is starting to go! Nothing serioius (yet), just seeing lots of strands coming out. Thank goodness I picked up Kristen Wiig this week.

In the days following chemo I then take a regimen of drugs to control the nausea, and get one injection to ward off infection.

But this one's probably the best medicine. Even though she's giving me a surly look here because she's not allowed on this particular couch at my Mom's house :)

What about my hair?

My hair has been a hot topic of conversation lately, since it could fall out any day now.

In one of the first meetings with my oncologist I was told that I'd likely lose it within the first 1-2 weeks of treatment (!), advised to just proactively shave it off in order to spare myself the emotional drama of seeing it come out (!!), and given a prescription for a wig (!!!).

Well, we're now two-weeks in and my hair is still hanging on, but here's what I've done:

I chopped it all off. Since I decided not to go the shaved-head route, I thought it would be easier to deal with the fall out if it were shorter, and also would give me time to get used to not having long hair.

My friend Catherine accompanied me on a very funny wig shopping experience to the Salon at 10 Newbury, where the owner Patricia has been making custom hair replacements for about 30 years. They were so kind and discreet - it's actually a large, full-service salon, but they have a private section in the back specifically for the hair replacement folks. Cath and I tried on a variety of wigs - and had lots of laughs doing it, much to the dismay of the more serious-minded Patricia - short, long, synthetic, and all human hair. The latter are absolutely amazing - they are made by hand and are so realistic it's creepy. They matched the color to my natural hair, ordered an "unfinished" one, and then custom fit and cut/styled it while on my head.

I also have a new found appreciation for Locks of Love, the nonprofit organization that provides human-hair wigs to disadvantaged youth (<21) suffering from medical hair loss. The human hair wigs are soooo much more realistic than the synthetic, but they are also a lot more expensive. Insurance covers a portion of it, but if you want a long one like I did, it doesn't cover all.

While my short hair is growing on me (ha), I decided to go with a longer wig that looks eerily like my old hair. Truth be told, I'm not sure I'm really a "wig" person (I've heard they get hot, itchy, and can give you a headache) and I think I may be more comfortable with a simple knit cap, but decided to get it anyway. There may be days when I just want to look like the old me, and it will probably be be more comfortable for business meetings and the like. We'll see.

So, without further adieu...here she is. I've dubbed her Kristen Wiig, after my favorite comedienne. I'm sure she'd be proud.

 

BRCA1/2

Today's post is a science lesson, courtesy of Genetic Counselor Michele, with whom I met this afternoon.

I had heard of this genetic test and mentions of "the cancer gene" before, but really didn't understand it all until I got my own diagnosis (which was one month ago today,  incidentally). I always assumed they tested you to see if you had "the gene" - a genetic marker that you're predisposed to breast cancer. But that's not exactly the case.

You see, we all have "the gene." It's actually two genes, BRCA1 and BRCA2, that work in concert to repair damaged DNA (apparently strands break all the time and a group of "caretaker genes" of which the BRCAs are a part work to repair them) and prevent tumors (abnormal cells) from growing in your body. We all get two pairs of them - one from our mother and one from our father.

The problem is when one of these genes is faulty - or mutated - in which case it doesn't do its job properly and abnormal cells multiply unchecked. Cancer (the uncontrolled growth of abnormal cells in the body) ensues.

About 90% of breast cancer cases are spontaneous, meaning doctors can't figure out what caused the cancer. Crazy.

About 5%-10% are hereditary (and I guess the balance must be tied to a known environmental factor) and there is a genetic test that can be done to determine if that's the case. It is wildly expensive and is only done by one lab, called Myriad Genetics who cloned the gene back in 1994 (Dad: NASDAQ MYGN ... get on it!).

The test was controversial in the past (insurers using it as evidence of a pre-existing condition and an excuse to drop coverage), but it is now illegal for insurers or employers to discriminate based on this information. It's a simple blood test, with results turned around in 2-3 weeks.

A positive result doesn't necessarily mean you'll get breast cancer, it just means you have a higher likelihood of getting it than the average woman. A woman without the mutant gene has a 10%-12% chance of developing breast cancer in her lifetime, whereas a woman with it has a 50%-85% chance of developing it. Plus a 40%-60% chance of developing a second cancer at some point thereafter. Eek. That is why so many women who test positive for the gene - even those with no evidence of cancer - opt for preemptive measures like a double mastectomy. And it is why they recommend that people like me, who already have it, go ahead and get the test so that we have as much information as possible when it comes time to make the surgery and long-term treatment decisions. There is also a high correlation between breast and ovarian cancers, so if you test positive for the gene they do much more rigorous testing for the latter (which is MUCH harder to detect...there is no mammogram equivalent for ovarian cancer). Oh - and first-degree relatives of those with gene mutations have a 50 percent risk of carrying the same mutation.

So, Michele and I mapped out my family [cancer] tree (they should add that module to Ancestry.com) as a starting point. They actually don't think I'm a candidate for the mutation because there is no history of multiple cases of  early onset breast cancer in my family (yes, my Mom's a survivor, but she got it very late in life, as did her mother and they are the only two known cases) and I am not of Ashkenazi (Eastern European) Jewish descent (which apparently has a higher incidence). But they also told me that my initial scans indicated the cancer hadn't spread...and it had...so who knows. I'm learning that there are never really any definites with these things; the doctors do the best they can with the information they have available, but sometimes that isn't enough.

I guess that's where faith comes in :)