Paying It Forward

As I've mentioned a million times, I am completely amazed and humbled truly, by the support and generosity of everyone following this crazy story.  From the motivating emails, to the treats that seem to show up almost daily on my doorstep, to the babysitting offers, to my work colleagues picking up my slack and never complaining, to my mother who has done everything around the house for three weeks, to the "tea" my neighbourhood is organizing for me, the list goes on and on.  Despite all this, or in addition to it, I have to tell you I actually sat at my desk and cried reading an email from a perfect (and lovely) stranger in Florida today who is offering to lend me her hair.  Well, not her actual hair, but I'll let you read about it because I cannot put it any more eloquently than Jacki has done here.  All I need now is for my fashionable friends to send me links to cute hats, because well, you know me.

Radioactive Woman

Before I begin, just a quick note to say that my second drain came out yesterday - yay!  No more tubes, fluids, or fanny packs!

So, I have been given a laundry list of to-do's before stating chemo.  Today was the MUGA scan.  Apparently some of the chemo drugs can cause damage to your heart and its ability to pump blood properly.  Before chemo starts, they take some baseline images so that they can monitor any changes throughout treatment.  It's like an x-ray or MRI I guess.  A radioactive material called a tracer was injected into my vein which binds to the red blood cells and makes it easier to see how blood moved through my heart.  I had to lay on a table and they took about three pictures, and that was about it.  One of my least invasive procedures!  Cake.  As I was getting up to leave, I asked the nuclear technician if there were any side effects I needed to worry about from the stuff that was injected into me or from the procedure itself. 

"Well, if you have children I'd like you to stay at least three feet away from them for 24 hours.  No holding or cuddling the baby, no hugging. Since children haven't had a lot of exposure to radiation, we like to limit contact as much as possible.  I'm not as concerned about adults.  Your husband can sleep in the same bed with you, but I wouldn't recommend cuddling, or spooning for tonight."

I don't know, that might be something I'd share with patients before they come in?  I'm sure it's overly cautious, but still!  Here's the message I left for John: "Umm, Houston, we have a bit of a problem.  Seems like I'm going to be radioactive for a day.  If the bed is glowing when you come in tonight, you might want to think about sleeping on the couch.  Love you, bye!"

Had to be a little more creative with C:  "Hey Buddy.  You know what I did today?  I had this really funny test and now I can't touch anybody and nobody can touch me!  Isn't that funny?  I have to stay in my room and I can't touch anyone until tomorrow morning!  I think I hear Grandma watching Bob the Builder - go check it out!"

The first thing the baby does when he sees me at the end of the day is speed crawl over to me, pull himself up my pant leg and start whining piteously, "Mama, Mama, Mama," until I pick him up.  Good thing Grandma is around. 

In the end, it was actually pretty funny.  John, of course, milked it for all it was worth and said he'd have to pass my food under the bedroom door so as to not risk contamination.  I had dinner on a tv tray in my room with my laptop, and C waved at me under the door.  I came out of solitary when the kids were in bed at 7:30pm and made sure to give John a big hug. 

C came into our room the next morning and asked if the test was over now and if he was allowed to give me a hug.  How's that for cute?

Pathology Report

Today we had the post-op with the breast surgeon.  The main reason for this visit was to go over the pathology report which finally tells you the stage of your breast cancer.  Because none of my tumours measured over 2 cms and there was no lymph node involvement, I am Stage 1.  (The stages run from 0-4, but I knew even before surgery with invasive ductal carcinoma that I would be at least a 1. If you're really interested in how staging works, read more here). This is really the best outcome we could have anticipated.  I found out that my largest tumour was 1.1cm, and that my genetic testing for the BRCA gene also came back negative, so I don't have the genetic mutation that would increase my risk of a reoccurrence.  I like having stats to back up all the medical madness that I'm undergoing, but I don't necessarily find them all that reassuring.  According to the American Cancer Society, women with Stage 1 cancer have an 88% survival rate.  Sounds good right?  But that's a five year survival rate.  Five years?!  What the hell is that?!  I told my surgeon I was less than impressed with the numbers, but she did say that if cancer comes back it mostly does so within two to five years which is why the five year mark is such an important anniversary for survivors. Okay, that makes me feel slightly better, but I think some longer studies would help some of us younger gals feel a little more hopeful.  If anyone has more upbeat numbers or suggestions for resources, please feel free to share. Other than a follow-up visit in two weeks and a script to start physical therapy for my arm, I think my surgeon's role in all this is pretty much done.  What?  Breaking up already?  It's amazing that so much has already happened in a few short weeks.

The rest of the afternoon we spent at my oncologist's office getting geared up for chemo.  In my last post on this topic I explained that I am ER+ (estrogen receptive), PR+ (progesterone receptive), and HER2+ which basically opens up targeted treatment options. I will be taking 3 chemo drugs - Taxotere, Carboplatin, and Herceptin (TCH) once every 3 weeks for 6 cycles (about 4 1/2 months) and then I will continue taking the Herceptin alone to complete one year, and another drug Tamoxifen by mouth for five years. It seems most people feel lousy their first week of chemo and then the following two weeks aren't that bad (whatever that means).  I hope that is the case because I'd like to keep working on those days when I'm feeling "good".  The original plan was to start chemo on Feb. 21st but with the 20th being a holiday, treatments are all backed up and it ended up being a hard week to find an opening.  Instead, I will get an extra week for the mastectomy to heal, and I will begin my first round of chemo on February 27th.  The delay is probably not a bad thing considering I have to get blood work done, a heart scan, pick up drugs to offset the chemo drugs, have a port inserted into my chest for infusions, and take a chemo prep class.  My calendar has never been so busy --too bad it's not anything fun!

Drains

So far my recovery from surgery has been fairly smooth.  I'm actually in less pain than I imagined, and when my right side starts to feel stiff or painful I have percocet and valium to keep things under control.  The meds, and undoubtedly the surgery, make me a little drowsy so I have an extra nap here and there but otherwise, not terrible at all.  I still can't lift G-ski and raise my right arm very high, but I haven't done dishes or changed a diaper in a week so I'm not complaining.

The one definite pain in the arse, are the drains.  I have two drains at the incision sites that I need to empty twice a day and record how much fluid collects in the receptacle.  (Nasty!)  When the plastic surgeon deems the volume is low enough then he'll take them out.  I need to keep the collection bulbs safety pinned to the band of my bra so they don't pull on the drains, or worse, the kids don't rip them out.  One is coming out today, and hopefully the other one by the end of the week.  For the most part they are under my shirt and out of the way as much as is possible.  The tricky part is showering.  I can't exactly hold two drains in my hands and shower, so they gave me a little fanny pack to stick them in.  I still need help holding them when I'm toweling off and re-attaching to my clothes but at least it's manageable. Apparently some surgeons don't let their patients shower for a week+ until the drains are removed.  Thankfully my plastic surgeon is a little more laid back.  Here's a shot of the last drain to come out.  You'll be happy to know I took the photo early in the morning before the bulb had time to collect much fluid.  I was definitely not cut out to be in the medical profession.

Young Women

I know it's pointless and a little torturous, but I have to wonder sometimes, "Why me?  The American Cancer Society estimates that 226,870 new cases of invasive breast cancer will be diagnosed in the U.S. in 2012. The chance of a woman having invasive breast cancer sometime during her life is a little less than 1 in 8.  If you told me there was a good chance I'd develop breast cancer as a grandmother, I wouldn't be that shocked.  As a 39 year old mother of two children under four years of age - not so much. In the United States, only about 5% of all breast cancer cases occur in women under age 40.  I don't smoke, drink excessively, or have a family history of any kind of cancer.  I'd hardly consider myself an athlete, but I like to run, try to work out on a regular basis, and have what I consider to be a healthy body weight. My average run on the weekend is 7 miles, our family, in general, likes to spend a lot of time outdoors, I breastfed both my children, and I don't paint my nails for fear of all the unregulated toxins in nail polish. Alright, I don't have the best diet - I have a terrible sweet tooth, and probably don't eat enough fruits and vegetables - but doesn't that describe the majority of people?

The funny and selfishly comforting thing is, I do seem to be hearing about a lot of other young women with breast cancer, both online and from friends that know someone who has been affected.  Just recently I discovered a woman at my son's preschool, which has a population of maybe 125 kids, had breast cancer six months ago.  Our sons are the same age and it has been so inspiring to hear her story.  There is even a foundation in my area called the Tigerlily Foundation that focuses on young women (ages 15-40) with breast cancer, as well as young member support groups put on by Life with Cancer. I haven't taken advantage of any of these resources yet, but I hope to overcome my shyness and do so soon.

When I first learned about my cancer I was obsessed with reading blogs like Jacki Donaldson and Jayne England Byrne because it's real people that tell you all the stuff you really want to know.  I have Dr. Susan Love's Breast Book on my must read list, but is she going to tell me where to get the best "underhair"?  I don't think so. I struggled a lot with whether to create a blog about this whole experience and whether to make it public.  I consider myself a very private person and my first thought was to just write it for me, to chronicle the whole experience and for the sheer therapeutic value of journaling. I changed my mind for two reasons.  First, it's an easy way for friends and family to check in on what's going on, without my having to write or call individually with repetitive updates. Plus, people can read as much or as little as they feel comfortable with. Second, I'm leaving it open to the public and keeping the lame-ass title "Michelle's Breast Cancer Blog" so perfect strangers going through the same ordeal can find it easily and hopefully get some degree of comfort, or information, or reassurance, similar to what I took away from my fave bloggers listed above.  I know nothing about writing a blog and don't have the time to make it as pretty, witty, and well-written as I'd like for public consumption, but hopefully I'll improve as I go along.

My Network

The first thing you have to know about my neighbourhood in Vienna, is that it's a little like living in Mayfield from Leave it to Beaver, circa 1959.  Before I was even released from the hospital my good friend Nicole had found a website called TakeThemAMeal which helps organize dinners for people who need a helping hand. I think we are currently being fed until April.  And that's not including the food my work colleagues had already sent home with me to stock the freezer. The hilarious part is that my cooking is mediocre at best and everyone is bringing us these wonderful gourmet meals.  I feel like I need to send a disclaimer out saying that really, BLTs are just fine.  Here is a picture of my dining room table when I got home, and that doesn't even take into account the piles of cards, emails and phone calls I've been getting from my friends and family, here and in Canada.  One thing I've realized is that everyone wants to help.  It's difficult to know how I'm going to react to the treatment schedule and what help I might need, but it's good to know that I have a network in place, and that they're awesome! 

Surgery

So, it was a little strange being at work and trying to focus on getting back up to speed on my files while I also rushed around doing errands, going to pre-op appointments, and trying to wrap my head around the fact that I was basically getting a piece of my body cut off in a little over a week - Jan. 30th.  I debated over whether to tell my son C that I was going to the hospital, but in the end the distraction of having Grandma around to play with allowed us to gloss over it and pretend I was just working late.  Thankfully my mom will be in town for three weeks - basically the whole mini hospital stay and three week recovery period - which is awesome.  I can't pick up my little 23 pound butterball for three weeks so I'll definitely need help shuffling the kids back and forth to daycare/preschool and with all the other daily activities so that John can actually get some work done and maybe even keep his job. 

The weekend before the surgery was fairly uneventful.  For all of January I had actually been the one taking the kids to all their weekend activities because I knew John would be doing the lion's share in the months to come, so I took C to soccer and G to swimming.  We picked Grandma up from the airport, and C even had the extra special treat of an afternoon with Daddy at the Monster Truck Jam at the Verizon Center.  As far as the kids were concerned, life was good.

On Monday, January 30th, John and I showed up at Inova Fairfax Hospital at 6 in the morning for an 8 o'clock procedure time.  C was so excited to show Grandma his preschool and introduce her to his friends and teachers that he didn't even question why she was taking him.  This was my first surgery ever so I found the pre-op bay a little more hectic then I envisioned.  All the nurses, your surgeon, plastic surgeon, anaesthesiologist, and their operating assistants all come in with paperwork and basically check your arm band and ask you all the same questions over and over again.  I remember being wheeled into the operating room, looking up at all the lights, and then waking up in the recovery room hours later.

My surgeon operated first, obviously removing the cancerous tissue and the sentinel lymph node - which came back negative!  This was huge for several reasons - it meant there was no need to remove any more lymph nodes which is painful and can cause complications, but there would also be no need for radiation as part of my treatment - yay! Sentinel node involvement is a big factor in the staging of the cancer, but I'll get to that later.  Based on the placement of my tumours, she was also able to do a nipple sparing mastectomy.  It's still too early to know if the tissue will survive, but if so, it's obviously less I'll have to worry about regarding procedures down the road, and I'm all for that.  After the surgeon did her thing, my plastic surgeon came in and started the reconstruction, placing an expander under the tissue to be gradually stretched as time goes on.

I was supposed to be in the hospital for only one night, but there's always something right?!  Of all things it was my bladder that necessitated another night's stay.  Apparently all that anesthesia made my bladder a little sleepy so I didn't seem to be able to void my bladder as much as they would have liked. It actually caused more commotion than I would have thought normal, and I even have to have two follow up appointments with a urologist to make sure everything is as is should be, but it's the least of my worries right now.  Anyway, I made it out of there late Wednesday afternoon and couldn't have been happier to be home --and that wasn't just the Percocet and Valium talking.