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March 2012

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.

IMAG0792The 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.

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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...

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

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

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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!

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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. 

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 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

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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:

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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:

IMAG0591And this is the contraption I'm hooked up to:

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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.

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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 :)

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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 (!!!).

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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.

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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.

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