CultureJunkie

Time Off

Hi, Everyone -

Just wanted to give you a quick update on things. Everything seems to be healing well: I finally got that nasty surgical drain out (after two weeks!) and am doing exercises to hopefully regain full range of motion in my left arm. I'm still in a bit of pain, and my fingernails are suffering the post-Taxol effect, but I don't have any other side effects and I have a tiny bit of hair growing back on my head!

But as I said in my last post, I was anxious to take some "time off" from Cancer, and spent the last week "living" again. I returned to work, visited with friends, published a blog post on Charlestown Patch, and took full advantage of all the festivities taking place in Boston this week - Navy Week (celebrating the Bicentennial of the War of 1812) and the annual 4th of July Harborfest.

Here are a few of my favorite photos from the week, along with a slide show of the full set (see it on Flickr here):

Ahoy, Mate!

Old Ironsides

The Blue Angels

This week, I plan to talk to a few more survivors about their experiences (specifically with mastectomy) and gather my list of questions for next Monday's meeting with my surgeon and oncologist. I should know more about next steps then.

Happy 4th!

Reality Bites

The past week has been an emotional roller coaster, full of highs and lows.

First, the high of getting through surgery with relative ease. Then, the low of dealing with a surgical drain and the pain that arrived once the anesthesia and pain killers wore off. I have limited use of my left arm, can't lift or carry anything over 10 lbs, can't sleep on my left side, can't move too quickly, or pick up the dog. I also can't look at the incisions because it makes me queasy, but I've been told my surgeon did a remarkable job, I'm healing well, and will likely have minimal scarring from the lumpectomy.

Next, the high accompanying the kindness of friends and strangers alike. I've received all kinds of Get Well wishes - balloons, flowers, a fruit basket and teddy bear - that have brightened our home and lifted my spirits.

I even received a lovely Get Well necklace from the girls at Mint Julep, a great boutique in Brookline. I had purchased a dress there recently which ended up having a small tear in it. When I brought it back they graciously offered to replace it with a new one that would be shipped from the manufacturer. I casually mentioned that they needn't rush because I was going in for surgery the next day and it would be weeks before I could return to get it. They were kind enough to not only ship the dress to my office, but include a get well note and necklace with it.

So I was on a high, thinking that getting this drain out would be the last gruesome procedure I'd have to endure, and while it didn't come out this week as I'd hoped, it will surely come out early next week and then I could move on with healing.

And then I received a call from my surgeon, and with it, a new low:

The pathology report came back, and the cancer had spread in a way that prevented them from getting all of it. While the main mass did shrink fro 4.6 cm to 1.5 cm, they found numerous other small, cancerous cell throughout, and were unable to get clear margins (meaning that the cancerous cells extend to 0.1 cm from the top, back, and side of the specimen the removed, an indication that they likely exist beyond that area). They recommend a mastectomy, to be completed at the end of July after I have healed from the last surgery, followed by radiation.

That's all for now. I think I'm going to take the weekend off from Cancer, and then resume another cycle of research/questions/debate next week. Thank you for all of your support thus far. I was hoping that this post would be the one where I say all the prayers had been answered, but we can't give up just yet!

 

 

Easy Peasy

Surgery is complete! And despite my anxiety going into it, everything went smoothly.

I arrived at MGH a little before 6am (a big thank you to the special folks who sent a car service for me) and promptly went into pre-op.

The needle localization procedure that I dreaded was first, and while it hurt a bit, it wasn't nearly as bad as I'd thought. I had some Ativan in me to calm me down, and I listened to the relaxation tape throughout. Both helped. And now I know why you have to be awake for this procedure: it involves standing up at a mammogram machine, and while your breast is compressed in the device, the doctor threads two thin wires through it to localize the califications for surgical removal. You then leave with the wires sticking out of your chest. Good times.

I then went back to my room where I watched tv and took a nap before the lumpectomy and lymph dissection. I barely remember going into that procedure, because I (thankfully) received anethesia for this part of it. The next thing knew it was about 6pm and my parents joined me in the recovery room. Dr. Specht was her usual upbeat self, indicating everything went according to plan and that she was really pleased with the outcome.

We got home to my parents' house at about 8pm last night (I slept the whole way) and after a quick bite I went to bed.

And I feel well today!

A bit grossed out by the drain in my side that removes fluid from the surgical site, but I'm getting used to it. I'll spare you the real-world picture and share this image instead: the egg-shaped plastic piece hangs from a thin tube that is attached to the incision. It fills with fluid throught the day, and I (and by "I" - I mean "my mom") have to empty it out morning and night. When the fluid output is <30cc (usually after a week) the drain can be removed.

It will also take about a week to get the pathology report back on my tumor.

But for now I just relax and heal (and wait for my hair to start growing again!), until I go back in to meet with my oncologist on July 9th and find out my radiation schedule.

Thank you, again, for all the kind words, care packages, well wishes, wish bracelet and prayers...they really worked!

 

 

The Incredible Shrinking Tumor

Finally some good news from the health front: the chemo worked!

Back in January, the tumor in my breast measured 4.6cm and was too large to surgically remove and obtain clear margins. So I was prescribed a 4-month course of chemotherapy designed to shrink it to a more manageable size, and I'm happy to report that the lastest MRI shows that it is indeed much smaller - now less than 2cm!

I had the MRI on Wednesday and actually went home with copies of all my images on a CD. I debated whether I should look at them or not - the technicians at the imaging center don't share any information or results with you, and I wasn't scheduled to get the final readout from my surgeon until Friday - but curiosity got the best of me and I did. At first I didn't know what I was looking at, but after a little Googling ("How to read a breast MRI") I felt pretty confident that the outlook was good. And it was confirmed yesterday when my surgeon informed me that she was thrilled with the outcome (and that I'd been spot on with my interpretation of the MRI).

Yesterday I was also able to get my hands on the images from January, and it's really clear when you compare the before and after. Here they are in all their glory - cropped so as not to reveal too much of my anatomy :) The brighter white areas are the cancerous cells (which glow in the MRI thanks to the contrast dye injected into my system beforehand); the black circle is a metal clip that was placed as a marker of the tumor location. You can see how much smaller the white area is on the image on the right:

 January 2012

                

June 2012

So things are looking good. And how's this for a sign: my friend Ana had given me a Wish bracelet back in February, which I dutifally tied around my left wrist (the surgery side). Now, you cannot have jewelry of any kind on when you go into surgery, and I was wary of having to cut the bracelet off (superstitious that it would result in bad luck!). Wouldn't you know - the bracelet fell off on its own yesterday, which I discovered while out for a celebratory dinner with my girlfriends, Ana included. I guess my (short-term) wish came true!

While all of this is this is great news, I'm not done yet. I am scheduled to proceed with a needle localization, lumpectomy and lymph node dissection next Wednesday, so keep the prayers and positive vibes coming to help me get through this next hurdle.

I'm anxious about the procedures (the needle part in particular) but feel really good about the plan - chemo plus lumpectomy and radiation (which I'll have for about a month after I recover from surgery) has been shown to yield the same long-term outcomes as a mastectomy, while preserving the breast and having minimal scarring.

Finally in the home stretch!

 

 

D-Day and the Ghost Army

Time to take a break from chronicling my personal battle to remember one of great historical importance. Today is the 68th anniversary of D-Day, the World War II invasion of Normandy, France, by the Allied forces.

I had the opportunity to tour the beaches of Normandy back in on the 59th anniversary, June 6, 2003. It's a remarkable and moving experience, even if you're not a history or WWII buff. And whenever I think of that trip - as I did today when I heard reference to the anniversary on WBUR - I think of our chance encounter with a group of British vets who were part of the 6th Airborne Division. These guys were the paratroopers who glided in to secure area bridges in order to limit German counter-attacks during the invasion.

We were driving home to our place in Honfleur, when we randomly came across Pegasus Bridge, where 181 men from the 6th Airborne Division/7th Parachute Battalion glided in on the night of June 5, 1944. We stopped to check it out and were enchanted to find a group of those very men celebrating the anniversary over beers. They were so delightful - and so eager to share their experiences - that we ended up visiting with them for hours, even following them back to their inn to share dinner and a homemade bottle of Calvados. They were full of life and remarkable stories, like how they reunited at the bridge every year since the War, and in the early years they would get drunk and dig up old grenades that they had buried upon landing. When the War ended in Europe, some of them went on to fight the Japanese in Burma. These were incredibly tough guys. And the bridge was actually named in their honor - it was originally called Caen Canal bridge but later renamed after the Pegasus emblem that adorned their uniforms.

Here I am with Wolfie (top) and Jim (bottom). I'm sad to say that after exchanging Christmas cards for a couple of years, we lost touch.

But turning back to WBUR - today they interviewed Lexington filmmaker Rick Beyer, who is working on a documentary about the Ghost Army of World War II, a top secret group of men who used "trickery and artistry" to fool the enemy. It's absolutely fascinating - many of them were artists who would later become famous (e.g., fashion designer Bill Blass, photographer Art Kane <- this is an awesome site, btw), and they used inflatable tanks and sound effects, among other tactics, to fool the enemy in Normandy. It was a group of 1000 men who would set up camp on the front lines, making it appear as if they were a group of tens of thousands. The interview is worth a listen, or you can get the full backstory on the documentary at GhostArmy.org where Beyer is soliciting donations to help fund its completion (Rick: if you read this, you should consider setting up a Kickstarter campaign!). And if you want to see more, the Ghost Army exhibition is on display through the month of June at the Beverly Historical Society.

Phase I Complete!

Today I received my last chemotherapy infusion. It was sort of anticlimactic - no spontaneous singing (like Cracker Barrel on your birthday), or confetti falling from the ceiling. But it was a big milestone in my treatment: Phase I is now complete.

It was a long 4 months and while I'll miss seeing the smiling faces of my care team, I am soooo happy to have that phase behind me. And I chatted with a fellow patient today who provided a sobering reminder of how lucky I am to see the light at the end of the tunnel. He is battling multiple myeloma, a terminal case of cancer of the bone marrow. I've been spending 7 or 8 hours at the hospital per treatment knowing that it would end on this day, whereas this poor man spends 12 hours per visit in the latest clinical trial, hoping to get some short term relief.

I still have some occasional bone pain, random ankle swelling, night sweats, cording, and a fair amount of fatigue, but for the most part I feel much stronger than I did at the beginning. I can't say the same for my hair, brows, and lashes - they have finally given up the fight. Here's what they looked like back in February:

...and here's what they look like now:

But the good news is that I should start seeing some new growth on my head in about a month. Word is, it'll be peach fuzz, possibly light or gray because chemo kills the pigment, and maybe even curly. But it'll revert back to my straight, brown locks at some point.

And in the meantime I've poured my cosmetic energy into my nails and did this fun sponge application which I first spotted on Pinterest:

So next up is Phase II: surgery. I go for my breast MRI next Wednesday, followed by a surgical consult on Friday, and surgery on June 13th. I'm currently reading Prepare for Surgery, Heal Faster, as recommended by the social worker at MGH, in hopes that some of the mind-body techniques it teaches will help me get through it without stress.

But for now we'll just celebrate the fact that I made it through chemo!

            Chemo #1 (February 2012) and Chemo #8 (June 2012)

 

Lucky No. 7

This was a very good week! Most of the pain I was experiencing was gone, I started exercising again, and I completed my 7th round of Chemo. So just one more to go.

I started doing some very basic yoga (I've been an active practitioner for years, but have been away from the studio for 4+ months now), but it's been limited by a new side effect: Cording. This can happen after lymph node removal (which I had) and occurs when lymph fluid builds up under the arm and crystallizes around muscles/tendons, creating a thick, hard cord that runs from the armpit down the inside of the arm (attractive, right?). It's sore, feels like a very tight tendon, and has limited my range of motion in that arm. But it is reversible through "aggressive massage" and exercises designed to break down the crystallization, and I will hopefully see the physical therapist about it next week.

I've also been walking - two to three miles every day for the past week - and while I won't set any pace records it has really improved my stamina and all but eliminated the pain in my legs. Plus, I'm getting to enjoy the fresh air and sunshine, and all these Spring flowers in Charlestown:

 

 

 

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!