Tuesday, November 23, 2010

Happy Thanksgiving

Can you believe Thanksgiving is less than 2 days away?  I can't.  The time passes so quickly it's hard to remember how it all sped by without consulting you first.  It already feels like my cancer happened eons ago even though my treatment just finished up just a month ago.  And just a few months before that my cancer journey began.  I have never gotten around to sharing the back story of how I came to be diagnosed.  If you have been following the blog you know that my gynecologist felt a lump during my annual exam, I had 2 biopsies and in early September I was conclusively diagnosed with invasive ductal carcinoma, a slow growing breast cancer. 

What you don't know is that on June 22nd I had my first mammogram and ultrasound and a radiologist at the Breast Center informed me that same day, while I was still on the exam table for the ultra sound, that I had a benign fibroadenoma.  She said to come back for a follow up in January of 2011 because they had no previous mammograms or films to baseline this finding against.  I was so relieved to have gotten immediate feedback on this mystery lump that I didn't even realize was there the previous week.  The doctor said this happens to women all the time and is very common...nothing to worry about.  And so I didn't.

About a week later I got a call from a gentleman identifying himself as the Medical Director at the Breast Center.  He left a very cryptic message on our answering machine and left a call back number in an area code far away from the Breast Center.  I called back a couple of days later.  No answer.  No voicemail.  Weird.  I got a second message and again, I called back a couple of days later and still no answer and no voicemail.  I didn't think much about it....well that's not true.  I thought it was really odd this person I've never met was contacting me and with a call back number hours from here with no voicemail.  I honestly thought he was trying to sell me something.  I don't know why I thought that.  But my senses were definitely alerted to this odd game of phone tag. 

Another week or so later the post office left a tag on our front door saying I had certified mail to pick up.  I'm sure you can figure out who it was from....but at the time I had no idea.  Work and other things kept me from picking up my certified mail for at least another full week.  The letter was indeed from my mystery caller, Dr. RR.  Dated July 19, 2010, "....The study you had on 6/22/2010 requires further evaluation.  Specifically, I recommend a needle biopsy of the nodule in your left breast.  This is because the finding is new.  It is still probably benign but it should be reconciled with tissue biopsy at your earliest convenience....."  Not the type of news that you like to read about while standing in the post office on Saturday afternoon.  What was going on?  The other Dr. told me everything was fine. 

I started making phone calls first thing Monday morning.  The first to my gynecologists office...did he know about this?  What should I do?  He was on vacation of course, but a nurse pulled my chart and informed me that they had a record from the Breast Center saying, not only did they recommend a biopsy, but I had already been scheduled for one.  Huh????  I then dove into the story detailing the weird chain of events and the nurse recommended I contact the Breast Center and go ahead and schedule a biopsy.  I hung up and called the Breast Center and retold my story again.  "Can you please hold?"  Sure.  Someone came back and said, "We're going to have look into this and someone will call you back.  Where can we reach you?"

Not more than 5 minutes later, mystery Dr. RR called my cell phone (the number in my file and that he should have been calling all along).  I was upset.  I was confused.  I was mad.  Really mad.  Our conversation went something like this....

....How could this happen? 
"I apologize...."
Doesn't your facility follow a consistent standard of care in diagnosing questionable breast tissue?
"There are 2 accepted standards of care." 
Why did your office tell my gynecologist that I had scheduled a biopsy when I didn't even know I needed one? 
"Sorry, that is a coding defect in our system"....

Really?  Ok.  I struggled to process all this.  As pissed as I was (and I was pissed!), I couldn't very well ignore the recommendation of a doctor to have a biopsy.  So one was scheduled for 2 days later...to be performed by the Medical Director himself, Dr. RR.  The biopsy was fast and relatively painless.  And 6 days or so later, I got another call from Dr. RR with the results.  "Inconclusive."  Are you kidding me?  "There are abnormal cells, but they can't be positively identified so we are going to send them to a pathologist at Standford to review."  Ok.  Great (that was a sarcastic great fyi).  Another few days go by and late on a Friday afternoon I was once again was talking to Dr. RR.  He informed me the results were still vague...."the Stanford pathologist detected a few cells that could be carcinoma."  What is a carcinoma?  "Well, it's cancer, but you need further evaluation".  Ok, so what now?  "I'm going to talk to your gynecologist and we will contact you with a recommendation."  So I get to spend Saturday and Sunday thinking about how might or might not have cancer?  (I kept this particular thought to myself).  Wonderful.

Monday morning,  August 16th, I got a call from my gynecologist, Dr. M.  He had spoken to Dr. RR and they both concurred that I should meet with surgical oncologist, Dr. K.  The only thing everyone could agree on is that this lump would need to come out one way or another.  I met with Dr. K on August 23rd and her first order of business was to get me in for an MRI.  The MRI showed one lone conclusive lump approximately 2 cm in diameter.  Dr. K said it was clearly defined and they should be able to get a conclusive diagnosis.  She didn't feel comfortable moving forward until we knew what we were dealing with and neither did I.  So I had biopsy number 2 on September 1st and 2 days later, on Friday September 3rd I got the call from Dr. K finally confirming that unquestionably, I had breast cancer. 

Even though breast cancer isn't the news anyone wants to hear....and the road to finally get that news wasn't as smooth as it could have been, I am thankful for so much this year.  I am thankful that Dr. RR came across my file and persistently tried to reach me.  I am thankful that I was referred to Dr. K.  She is a phenomenal surgeon and expert in breast care.  I am thankful that my cancer was slow growing and was caught early.  I am thankful to be cancer free.   And most importantly I'm thankful for the love and support from my friends and family, most especially my parents, siblings and of course my awesome husband Brad. 

What are you thankful for?

Sunday, October 31, 2010

No Chemo!

Exactly 8 weeks after I was diagnosed with breast cancer we got the great news that I don't have to have chemotherapy.  Woo hoo!  The surgery went great.  Radiation went great.  And no chemo.  What more could we ask for?  Honestly, we feel so incredibly fortunate!

So what's next?  I will begin taking a medication called tamoxifen.  The type of cancer I had (yep, I am using the past tense) was estrogen receptive and tamoxifen specifically blocks the actions of estrogen.  The standard course of treatment on tamoxifen is a daily dose for 5 years.  This medication helps reduce the risk of recurrence.  There are some possible side effects...such as premenopausal side effects like hot flashes.  Please note the emphasis on "possible."  The doctor said some women take this medication and experience no side effects.  So I'm keeping my hopes high that I will fall into that group!  And Brad is too.  ;)

I will also have more frequent check ups, mammograms and periodic MRI's.  Essentially the doctors have all said that I will be watched like a hawk for the next 2 years.  I can handle that. 

Fred is officially dead!  I have enjoyed sharing my story with all of you through this blog.  Thanks to everyone who has been following the blog and who has reached out to us.  Your support through this process has been incredible and very touching to both Brad and me.  Though my story isn't completely over yet the updates on the blog will be less frequent.  If you are wondering how things are going and you don't see an update on the blog, feel to reach out to us directly. 

In the meantime if you want to follow another blog of mine that is much more light hearted, check out my food blog, The Ginger Snap Girl at http://thegingersnapgirl.blogspot.com/.

Until next time!   

Monday, October 25, 2010

Exit Stage Left

The Alien has left the building.  Friday afternoon I had my 10th and final radiation treatment.  One last scan in the CT and one last radiation delivery in the HDR room.  Shortly after my treatment I moved over the procedure room where Dr. P came in to remove the device.  One of the radiation therapists came in and let me squeeze his hand while Dr. P removed my Alien.  It was a little painful...it kind of felt like pulling a big scab off...slowly.  But once it was out, the pain was gone. 

After living with this device for a week, I actually learned what the Alien is officially called.  It's called SAVI (pronounced savvy), Strut Assisted Volume Implant.  For more info about the SAVI click here.  So, apparently if you ask, they will let you keep your device.  I'll give you one guess who thought it would be super cool to keep the Alien?  Hint...it wasn't me!  My SAVI Alien is currently wrapped up in a paper towel inside a plastic zip top bag sitting on our dining room table.  Let's just say it needs a little work before it can be mounted in a clear Plexiglas display box.  Enough said.

Leaving the radiation office was a little sad.  In just a week's time we had made fast friends with the staff there.  But it was great to be free! 

Afterwards Brad, my Mom and I went out to dinner to celebrate the successful treatment.  The evening was emotional for me because it felt like the hardest part of this journey was finally over.  Though an open question remains about chemo, completing the radiation was a significant milestone.  This whole process has been a little surreal from the time we found out positively that I had cancer, to all the research, learning and doctor's visits.  It was a series of steps to complete to keep things moving forward to ultimately treat the cancer.  It was almost like it wasn't happening to me, even though it was.   I think I tried to emotionally disconnect from the process and treated it more like a work project.  Now that the surgery is over and was hugely successful, and that the cancer did not spread, and that I was a candidate for partial radiation and the radiation went off without a hitch....I feel like I can breathe. 

I am humbled by this journey and feel a huge sense of gratitude to everyone who has been a part of this process.  From my family and friends to my doctors and nurses and other treatment professionals and most importantly to my fabulous husband, Brad who has been there every step of the way.  As it says on this great bracelet I received from my best girl friend Crystal, "Love is all you need!"  =)  No doubt I feel loved!

This week I'm spending time recovering from the whirlwind that was the last 2 weeks and just taking it easy.  I will be back at work on Monday, November 1st.  On November 5th I will see my Medical Oncologist, Dr. R and she will talk to us about next steps and make a recommendation on chemotherapy.  The recommendation is largely based on the results of a genetic test called Onco Type DX.  The test results should be back just in time for my appointment.  The lower the score the less likely chemo will be recommended and we are hopeful that chemo will not be needed. 

I will continue to post updates here so check back in a few days to see the latest. 

P.S. In other big news, I was able to take my first unsupervised shower on Saturday!  Woo hoo!  This too is a major milestone!

Friday, October 22, 2010

The Home Stretch

9 radiation treatments down.  One to go.  It's been a long week and I'm looking forward to my final treatment this afternoon.  The staff at the radiation center has been taking great care of me.  There is a team of people that work with me during each session and they are all really great.  We chat during all the prep time and our conversations always seem to turn to food.  Every time I leave the morning session (around 10:00 am) I am already thinking about what's for lunch.  

The sessions are going much faster now.  Everyone has the process down.  The earlier sessions took 2 plus hours.  Now we are down to 1 hour and 15 minutes or so.  I joked that when I came in today I could scan myself in the CT and hook myself up to the radiation machine.  Even though I am ready to conclude this part of the treatment, I will miss the staff there.  

Brad and my mom have also been taking great care of me.  Driving me back and forth to all the sessions.  Taking turns making dinners and preparing meals.  Brad has also been helping me do mock showers since I'm not allowed to get the device wet.  He's even washing my hair and blow drying and styling it.  His blow drying and styling skills have improved immensely over the last 2 weeks. 

In about an hour I leave for the last treatment.  Immediately following the last treatment they will take the device out.  I'm a little nervous about that.  I've heard mixed information from the staff about how people feel when they remove it.  Some take pain medication and some are fine without it.  So I'm leaning towards no medication and hoping for the best. 

I'll let you know how it all goes!  Wish me luck!

Tuesday, October 19, 2010


I'm not going to lie.  The first day of radiation kicked my butt.  It was the longest and roughest day of this battle so far.  Monday started off at 8:30 am at Dr. K's office so she could place the balloon device.  It turns out that the device the doctors elected to move forward with is not actually a balloon...it is the same shape as the balloon but allows for more precise control for delivery of the radiation...especially to the the areas where there is such a small gap to the skin.  The device kind of looks like one of those claws at Chuckee Cheese's where you use a joystick to maneuver it around in a (futile) attempt to pick up some random stuffed animal.  It seems the radiation "claw" is a newer technology and a specialist from the device company came down to assist Dr. K with the placement. 

The device placement procedure finally got underway around 9:30 am.  I was feeling "happy" from the vicodin (I elected to skip the valium).  Dr. K starts by administering a local anesthetic to pretty much the entire left side of my left breast.  That translates to about 20+ needles sticks....though only about 5 or so actually hurt, the rest were numb.  Then she makes an incision to insert the device with guidance from an ultrasound.  20 minutes of pushing, prodding and adjusting later, step one on the road to radiation treatment was completed.  It was now 10:30 am and we headed across the courtyard to the radiation treatment offices to meet Dr. H with my newly installed Alien claw.

The radiation is a multistep process that starts with baseline scans in a CT machine.  Then there are lots of measurements and planning that goes on behind the scenes to determine the customized "treatment plan" for delivery of the radiation in the exact right doses to the exact right location.  A team of doctors, radiation therapists, and physicists all work together to put the plan together.  Then I was moved to the "High Dose Radiation" room for the set up and delivery of the actual radiation. 

My device has 7 cables that each receive a certain dose of radiation for a certain amount of time.  Other long cables are hooked up to my device cables then measured, noted and finally hooked into the machine that delivers the radiation.  All this planning and preparation concluded a little after 1 pm and they were finally ready to administer the treatment.  The team retreated to their control room leaving me in the HDR room.  They could see me through video cameras and we were able to talk through microphones and speakers.  They tell me over the speakers we are ready to start.  A nearby machine about 3 feet tall and a foot wide, whirrs to life.  The machine sends out a dummy radiation seed through each of the 7 cables one at a time and I can her them descend and retreat 7 times.  Then the real deal comes through each cable.  The time each seed is sent out is different depending the complex plan that the team worked out earlier in the day.  The actual treatment itself takes around 6 minutes or so...or the length of 2 John Mayer songs, because I got to listen to the John Mayer on CD during all the prep and actual treatment.

After the radiation is delivered, a physicist comes in with a Geiger counter to ensure I'm not radioactive or anything else in the room.  Once the room is cleared a radiation therapist comes in and unhooks my cables from the cables hooked to the machine amongst other things.  And finally a nurse comes in to dress and tend to the incision where the device goes into the skin.  So by the time it was all said and done, I was released from treatment number one around 2 pm.  But guess what?  I had to come back in just 3 hours to get ready for treatment number 2.  Brad, Mom and I went to lunch and to kill the next 3 hours because we didn't have enough time to eat drive home and back and back again.

We were back again at 5 pm.  Back to another CT to check everything is still in place.  Back to the HDR room for prep, treatment and clean up.  Just before 7pm we were free to finally go home after an exhausting day. 

My little Alien doesn't hurt, but it is rather awkward.  And the biggest disappointment was learning my new friend would prevent me from taking a shower for the entire week.  Yeesh.

Today I completed 2 more treatments....only 6 more to go.   Signing off for now so I can get to bed and get up early to head back over for an 8:30 am treatment followed by a 3 pm treatment tomorrow.

I wanted to extend my thanks to all my family and friends who have reached out to Brad and I.  Your thoughts and prayers are all very much appreciated!     

 I hope to be back on Wednesday evening for another blog update.

Thursday, October 14, 2010

Couch Potato

I sort of got in trouble at the doctor's office yesterday.  She said that my activities should be extremely limited.  She granted me one daily outing to go out to eat, but otherwise I should be a couch potato.  She actually said I should sit around and do nothing, "like a potato".  So probably all the right armed activities I'd been doing weren't such a good idea.  I guess the problem is any activity that raises my heart rate, even a little bit, could cause fluid to build up in the area where my not so good friend Fred was...which could cause problems with putting in the balloon for the radiation treatment.  Oops.  But the good news is she did an ultra sound on my breast yesterday and thought everything looked good.  So maybe I wasn't so bad after all. 

The doctor shared the final pathology results with us.  I was officially confirmed stage 1 with ductal invasive carcinoma, estrogen and progesterone receptive and HER2 negative.  They also found a little DCIS (ductal carcinoma in situ) within in the tissue and doctor said that is common with this type of cancer.  The one odd thing is they found some other abnormal cells that they could not positively identify, however that does not change anything about the diagnosis. Fred ended up being 2 centimeters (a little smaller that previously thought) and there were "clear margins".  Meaning they took out tissue surrounding the tumor and all that tissue was negative for cancer, thus giving me clear margins.  They re-confirmed no cancer in the lymph nodes.  So essentially the cancer does not appear to have spread anywhere, which makes me a good candidate for the partial radiation procedure.  And the doctor pointed out that since Fred has been evicted I am technically cancer free!

As mentioned earlier Dr. K did an ultrasound to see how everything was looking to confirm if I could move forward with the partial balloon radiation.  The location of Fred was very close to the skin and there is now only a 4 mm margin of space between the cavern where Fred previously resided and the skin.  This is the minimum margin allowed for the procedure.  They like to see a little more clearance and before confirming I could move forward she had to get in touch with Dr. H, the radiation oncologist.  The doctors conferred later Wednesday afternoon and I received word that I have the thumbs up to move forward. 

So....between now and Monday morning I am doing my best potato impression.   Being a potato isn't as easy as you would think.  Do you know how much TV I've watched? 

Monday morning at 8:30 am I go back to Dr. K's office and she will insert the balloon catheter in her office (if you're interested in more details or want to see what one looks like click here).  Waiting until Monday gives a better chance of a little more clearance between the skin and the cavern.  As the skin heals it thickens.  Apparently there can be some minor pain involved so I have been instructed to drug up the morning of the procedure with a vicoden and a valium.  Yeesh!  The procedures takes about a half an hour from start to finish.  Once done I will walk over to Dr. H's office (just across the way) and they will do the "planning" for the radiation treatment.  Apparently they take several scans and do calculations based on my specific measurements to determine the exact right amount of radiation treatment.  I will get my first treatment sometime Monday morning and then 4-6 hours later I will return for the second treatment.  I will repeat with 2 treatments daily through the end of the week.  I'm not sure when the balloon device comes out....I'll put that on my list of questions for the doctor. 

Everything is moving forward as expected.  I am waiting for one more test result called an oncotype dx score. This score tells Dr. R, my medical oncologist, the likelihood of cancer to return and will help answer the question of chemo vs no chemo.  This test is in the process of being run and the results should be back sometime late next week.    I have an appointment with Dr. R on 10/25 to discuss the long term treatment plan to prevent recurrence of cancer and if chemo is needed.

I'm going to sign out and resume my spud like activities.  Don't be surprised if my next couple of blog posts detail the boredom of being couch bound.

Daytime TV here I come!   

Monday, October 11, 2010

The Road to Recovery

As the doctor warned, I would feel like I could do more than I should.  It's almost disappointing that I feel this good.  You know, I was expecting more time to milk it!  There is really no pain to speak of.  I took tylenol for the first day but that's it.  There is a bit of soreness where Dr. K removed the 4 lymph nodes, but it is really very minimal.  I have some basic exercises I have to do 3 times times a day just to keep things moving and stretch out a bit.

Saturday was a big day because I got to take my first shower.  Dr. K stitched the 2 incisions from the inside (not really sure how that works) and then sealed them with a surgical glue on the outside so everything is waterproof.  I don't even have any bandages.  I do have extremely limited use of my left arm so I did need some assistance from Brad post shower.  He's considering taking his entrepreneurial efforts in the direction Salon de Bradley!  He and I took a tag team approach to blow drying my hair.  I style with my right arm and he wields the blow dryer.  After 3 days, he is becoming quite proficient!  Though my hair has had better "hair days", it's presentable to the public and I don't feel too out of sorts.  And Brad has also mastered the art of the pony tail!

So far I'm feeling really good.  Granted I'm not out at the gym or anything, but I have been making at least one daily outing.  Friday we went to the Original Pancake House for breakfast, Saturday was a big day and we went to Target, Home Depot and Barnes and Noble and stopped for quick lunch.  I admit I was little worn out, but came home and rested on the couch for the next 5 hours where I watched a couple of netflix movies. 

Early Saturday evening my first visitor arrived.  Mom came down and spent the night and hung out with me on Sunday too.  We went to my favorite local Italian restaurant for dinner on Saturday and Sunday Mom helped me with a project that I started about 10 months ago.  Back in January I bought several rustic picture frames with the intention of filling them with my own photography.  I have a blank spot on the living room wall where a cluster of photos is begging to be hung up.  We selected 11 different photo options from the computer (mostly nature inspired) and then headed down to FedEx Kinkos to print them off of a flash drive.  We made a quick stop at Aaron Brothers to pick up some mats for the photos and then spent the afternoon deciding which 5 photos to use.  The photos are all in their frames now and sitting on my living room floor in the configuration in which I would like them to go up on the wall.  So guess who has a fun project for this afternoon?  I figure I might as well accomplish some things if I'm stuck at home!  And Brad is accomplishing them too, whether he wants to or not! 

Not sure where today's outing will be.  The weather has been quite warm, in the high 80's.  We might catch a movie or perhaps I can talk Brad into an hour at the beach enjoying the warm sun and the crashing waves.

I wanted to extend my sincerest thanks to all my family and friends who have emailed, called, texted, sent cards and of course the beautiful flowers pictured on today's post.  I can't tell you how much it means to me.  Your warm wishes and good cheer have brightened my days. 

I will post an update on Thursday after the follow up with Dr. K on Wednesday. 

Talk to you soon!