done and done

Alarm went off at 4:45am this morning... yowza!  We made it to the hospital by 5:30am (15 minutes early for our appointment -- we could have slept for 15 more minutes!)

This is the 5th hospital I've had the pleasure of evaluating the surgical department in and my experience was quite good.  Not quite as nice as Robert Wood Johnson, where the nurse gives you a carnation when you are discharged (I know, Jess -- you HATE carnations, right?  But it's the thought that counts, right) -- but seriously, RWJ has to make up for the fact that admissions is run like an assembly line.  Efficient, but not very personal.

The procedure went fairly well, but took a bit longer than Dr Escalona expected.  Apparently, I have a surprisingly thick chest wall (not sure what that means) and so he had to change his angle of attack.  Also, my veins appear to be "slippery" even up in my neck and they kept running and hiding so it took him a while to thread the catheter.  Recovery was easy though and I was sitting up and eating saltines about 30 minutes after surgery.  I typically sleep a ton in recovery, enjoying the post-anesthesia/pain med haze, but I had places to go, people to see and things to do. 

They wheeled me up to oncology in style and I got started.  The blood draw was fantastically easy -- drawn straight from my shiny new port.  I met with Dr C -- we discussed the treatment plan again and he answered our remaining questions.  I'll be going 3 weeks on / 1 week off -- so I'm already marking my calendar for the free weeks -- can't wait to enjoy the time off! 

Unfortunately, the chemo room was a madhouse -- every seat was taken.  We wound up waiting nearly 2 hours for a chair and a pump and a nurse to start my chemo.  I was starving and grabbed a bagel (people often bring in food and leave it  in the "kitchen area" for patients, nurses and family/friends to enjoy) and spent some time talking with another woman going through treatment for primary breast cancer.  Finally the crowds thinned out and I was able to take a seat, heading to the "quiet room" that I preferred from my first time around. 

There are two chemo rooms -- one that has 10-12 chairs, 2 TVs and tends to be pretty lively... and one with 5 chairs, no tvs and tends to be a bit quieter.  That one's my preference.  Abraxane doesn't have as many side effects as the drugs I took in round one, so there weren't any pre-meds (steroids, anti-nausea, etc).  We did have to wait for a while for them to mix my "bag" (it apparently takes a while to dissolve) but once it was ready, it was 30 minutes for the Abraxane & then 15 minutes for a "flush" with saline.  The nurse then rinsed my port with heparin to prevent any clotting, took me to a private room for my Lupron shot (in the tush) and we were done. 

We arrived home around 3pm.  I felt ok, but exhausted.  Took a few naps through the afternoon and enjoyed some mac & cheese for supper (comfort food!).  I keep thinking that my body should feel different with the chemo racing through my veins... but overall, I feel pretty normal today.  The pain from the port site is less than expected.  My chest feels "bruised", like someone punched me and my neck feels sore when I move or cough or swallow -- but nothing that a bit of percocet can't take care of! 

Mike, Otis and I went for a walk around the block this evening, caught up with some neighbors and I'm now relaxing to the sound of the waterfall we have in our backyard -- so glad that the heat broke enough that we can enjoy the fresh air and open windows!

Thanks to all for the emails, facebook messages and phone calls.  Today was a big step towards recovery and we appreciate the amazing support!

because of CANCER

Because of CANCER
I am scarred but I am STRONGER
I am scared but I am BRAVER
I am changed but I am BETTER
I am humbled but I am PROUD
Because of CANCER
I am a SURVIVOR and
I am THANKFUL
Because of CANCER
I have been HEALED
I have been AMAZED
I have been INSPIRED
I have been BLESSED
to meet some INCREDIBLE people
some are SURVIVORS
some are are CARETAKERS
some are now ANGELS
because of CANCER

~Unknown

email updates

Thanks to my very smart husband for providing instructions on how to receive new posts by email (he's a PHD after all... no wonder he figured this out!)

To get new posts delivered to your email account (and not have to regularly check here): 

1. Go to this site: http://www.feedmyinbox.com/
2. Paste the address: http://lc19.blogspot.com/feeds/posts/default as "Website or Feed URL", type in your email address, and "Submit".
3. Then just follow the instructions to get automatic email updates of the latest from my blog.
4. Just remember to stop by every now and leave me a comment and let me know you're still out there!

 (Mike says "if you're as dorky as he is, you can just use the rss/atom feed link at the bottom"  ...whatever that is!)

 

you've got to be a sheikh... or a prince...

Several of my friends felt very strongly that I should go and get a second opinion.  When I met with Dr Cairoli after my biopsy, I asked his opinion.  He felt very confident in the diagnosis and the treatment plan, but commented "it doesn't matter how confident I am -- you have to be confident in your treatment plan... so you need to do whatever it takes to gain that confidence".  He gave me some names at Fox Chase and U Penn in Philly.  I asked about MSK.... his response "it's a little bit further away and I really don't think they'll tell you anything different... but if you want to go to MSK because that's where the sheikhs and the princes go, then go to MSK".  Enough of the people that I care about felt strongly about MSK, so I set off to make an appointment.

I called the main number from their website and was put in contact with a woman who would be my contact.  She warned me that it often takes a few weeks to get in and said that they couldn't schedule an appointment until they received the following from me:  pathology from all 3 of my initial surgeries, chemo summary, pathology from my biopsy, reports from my recent scans and a summary from my last consultation with Dr Cairoli.  I sent her the information that I had the very next day, but it took me a few days to collect the more recent information from my doctors.  I faxed it over last Friday and hoped to hear back about an appointment.  I called on Monday and left a message for my contact. I called again on Wednesday and still hadn't heard back.  She finally called me back today.  Bottom line... first available appointment would not be until August... and they won't see me if I've already started my treatment.  Well, thanks for nothing.  At this point, I've wasted two weeks and now can't get in anywhere else before Wednesday.  So frustrating!

After not hearing from them for days, I put out a call for help on facebook.  I am thankful for the many responses I got -- one friend of a friend was able to get me an appointment, but not until July 12.  Still too late.  I cannot wait to start my treatment. 

Another friend from years ago reached out.  Her father is a very well regarded oncologist.  Not only does he have serious connections, but he was willing to talk to me that very day.  I sent him a copy of the faxes that I had sent to MSK.  His thoughts on my case (of course, he caveated that he had not seen me in person, but his thoughts based on the information I shared...) put me at ease and gave me the confidence I need to move forward :

• The treatment that I got 5 years ago was best in class -- they did everything they could to prevent this cancer from returning
• The workup I've gotten over the past few weeks was state of the art
• He does not know my doctor personally, but holds the Fox Chase affiliates in very high regard -- they have access to all the latest studies and information
• MSK doesn't have "magic" -- he sees nothing in my case or plan that makes him think I am in anything but capable hands.  He would definitely recommend against delaying my treatment to go up to MSK 

This past week has left me incredibly frustrated with the medical system.  If I'm having this much difficulty navigating things and I'm well educated, very familiar with business, proactive and independent etc.... what happens to people who are not as fortunate?  It's sad to think that so many people would stop seeking after the first "no" they hear or aren't as aggressive and don't get the treatment they need... and frustrating that you have to "know somebody" to really figure things out... apparently, you have to be a sheikh or a prince to get easy access to the top institutes.

shopping for a surgeon

So I've been shopping for a surgeon.  I've already had 3 people cut into me... but I've got to find someone new to place my port.  I was hoping that Dr Dultz would do it, but I need a general surgeon.  How do you pick a new doctor?  With less than a week before chemo starts, beggars can't really afford to be choosers.

Dr Cairoli's office gave me two business cards.  I was about to put them into a hat, but first I gave a quick call to my friend Annette.  As fate may have it, she had used one of the surgeons on my list and she LOVED him. 

I placed a call to his office which turned out to be quite frustrating.  The first two calls they put me on hold and forgot about me.  I finally got through to someone and she acted like I was ridiculous to think that this doctor would have an opening in the next week.  The earliest he could do it was July 6.  After consulting with Dr Cairoli, we decided it could work if we did my first round of chemo through an IV.  But it's not ideal.  Once you start mucking with chemo, it's best if they don't cut you open (unless absolutely necessary). 

I figured it couldn't hurt to call the other office.  I'm glad I did.  The receptionist was so kind.  After she heard my situation, she moved mountains to get me in to see the doctor right away.  Mike and I went in to meet with him today, still a little skeptical.  I had heard he was a great surgeon, but had a poor bedside manor.  We thought he was great.  He showed us a couple of different styles of ports, explained the procedure and was very friendly.  When he heard that my chemo starts next Wed, he agreed to do the surgery that very morning, at 7:30am.  Thank you Dr Escalona.

the results are in... (drum roll please)

Sorry it took me so long to get an update up.  I can't tell you all how much your love and support and concern has meant over these past few weeks.  Here's the latest:

Consistent with Mike's diagnosis (he is a dr you know  -- Yes, contrary to all rational thought, Mike and I reviewed my films this weekend (I left all 3 scans with a CD full of films):

• the brain scan came back CLEAR 
• the bone scan came back CLEAR
• the CT scan of my abdomen shows multiple lesions on the liver (no real surprise here)-- more than we initially thought, but not ridiculous amounts

So... where does that leave us?  We're kind of in a gray zone... Dr Cairoli presented two options...

1. hormonal therapy
• PROS: the tumor was confirmed to still be highly estrogen responsive (meaning it feeds off of estrogen).  Aromatase inhibitors are used to block the synthesis of estrogen.  Side effects are minor (only major side effect is throwing the body into menopause
• CONS:  these drugs only work in post-menopausal women, so I would need a Lupron shot to shut down my ovaries.  it would take 8-12 weeks to really see if it's working (and if it's not, that's 8-12 weeks of tumor killing time we just lost)
2. chemo --> then, when the tumors shrink, maintain with hormonal therapy
• PROS: pull out the big guns first.  as far as chemo goes, the recommended drug is fairly tolerable.  limited nausea/vomiting.  only a 30 minute transfusion.
• CONS:  it's chemo.  chemo sucks. 

The choice to us was fairly obvious and it was easily confirmed when Dr Cairoli said that if it was him, he would choose the chemo.  I didn't have to think twice.

So what's next?

I have to find a doctor to place a subclavian port into my chest.  After 8 rounds of chemo, 10 surgeries + a dozen other pokes and prods, the veins in my right arm are seriously P.O.'d.  As you may remember, I can only use my right arm because I had the lymph nodes removed from my left arm during my very first surgery (was that seriously five years ago?).  I have tiny veins to begin with and the port will enable me to get my treatments easily, without searching for a vein to stick.  I have an appointment with a dr recommended by my friend, Annette, but he can't see me until July 6... so I'm trying another dr this Thursday -- if he's good, I hope to have the procedure done either Friday or Monday.  Fingers crossed.

I start chemo next Wednesday, June 30.  It will be weekly treatments with Abraxane.  It's similar to one of the drugs I got the first time around -- it's a taxane, like Taxol, but with fewer side effects.  The current plan is to get weekly treatments and scan my abdomen again in 8-12 weeks.  If the tumors shrink, that's good news!  If they shrink a lot, we can back off the chemo and try to maintain the results with hormone therapy. 

I'm still working to get into Sloan Kettering for a second opinion, but for now... we can't sit here twiddling our thumbs for 4 weeks -- we've got to get started, so get your game face on!

scan scan scan....

When I was learning to drive, my dad used to use those words to express to me how important it was to be aware of your surroundings when you drive... so that you can adjust at a moment's notice.

"Scan... scan... scan..."  (rear view mirror... road ahead... side mirror...) 

(Of course, you'd have to know my dad to fully appreciate just how this scene went down, but it certainly still makes me smile.)

Well, the phrase has a new meaning in life, but the intent is largely the same.  It's crucial to be aware of what's going on all around my body... so that we can adjust at a moment's notice.

Thursday was my bone scan and CT scan.  I chugged the Readi-CAT on the way up to the office.  Confirmed:  it's just as gross as I remember.  Not so much the flavor (although that isn't very good either) -- it's the texture.  I suppose if it's designed to "stick" to the insides of your GI tract it's not going to have a pleasant texture... kind of like "the coating action of Pepto Bismol".... but not quite that thick.

I started in one building where they started an IV. My veins had just started behaving with the medical community... but after the past few weeks, they are back to their old form... they run and hide when a needle approaches, leaving the tech or nurse to poke and prod trying to get it right. Once the IV was in, he injected me with a radioactive tracer. I wish I had a camera with me (though they probably wouldn't let me use it) -- because I really liked the sticker they put over the IV -- flourescent yellow, reading "Radioactive", with the radioactive symbol on it!

Then I went next door for the CT scan.  They take me back and tighten up my IV and leave me sitting in a little room in the back.  I can hear them in the hallway -- the scanner has just gone down.  Seriously, there is no way I am going to drink that stuff again the next day... they have to scan me.  The nurse returns and explains that the scanner is broken... we check the time (I have to be back in one hour for the bone scan)... and then they send me to another facility for my CT scan.  It's about a 15 minute drive, but they get me right in and right out... and I head back up to Mt Laurel for the bone scan.  A bit of a scare, but all worked out!

Friday was my MRI.  They needed another IV for this test.  The nurse was a bit rough and aggressive (it really caught me off guard)... but she got it on the first try, so maybe that approach is better?  The scan took a little less than 30 minutes.  It was super loud (never been head first into the MRI machine!)  but I just kept my eyes closed and kept breathing and all was good. 

I slept in this morning until 9:45--- craziness!  I haven't really been able to sleep like that in weeks!  I'll credit a good, relaxing evening out last night with my ZS friends in Princeton (and a margarita or two) and give thanks for a full night's sleep. 

meet READI-CAT (worse than drinking toothpaste spit)

It seems as if I got a week's worth of things accomplished today.

I went into the office for the first time in nearly a week. It was good to see everyone and good to have the distraction to make the day pass quickly. I shared an update with my team -- just the basics, but hopefully, enough to ease their concerns. After I missed some key meetings, they were acutely aware that *something* was going on -- and the ridiculous cough I've had is obvious to even the most casual observer. My team in India had mixed feelings about the news -- a slight relief that I felt my cough (that started 4 days after my return to India) was a blessing -- they've been feeling badly that I've been sick ever since my return.

Dr Cairoli's office called to schedule my tests. The bone scan and CT scan are scheduled for Thursday. It will be a bit crazy because of all the prep -- here's the drill: 

• 9:30am -- no more eating or drinking (*except for Readi-cat cocktail -- see below)
• 12:15am -- readi-CAT cocktail  (seriously disgusting -- see below)
• 1:00pm -- injection of radioactive tracer for bone scan
• 1:45pm -- CT scan
• 3:00pm -- bone scan

OK.  Meet READI-CAT... they handed me this on my way out of Dr Cairoli's on Monday.  The ridiculous thing is that this moment elicited the most verbal and significant reaction of all the news I heard on Monday.  Of course, most of the news I heard was better than I expected... but seriously... gross.  I do not want to have to drink this stuff again. 

So... when I was a camp counselor, we used to do this toothbrush skit for the campers.  It was totally gross and awesome.  If you've never seen it, here's a link to a video of something close... (SBTW counselors do it better)

Choking down a bottle of this is like choking down a cup of nasty toothpaste spit.  For serious.  It's sitting in my fridge if anyone wants a sip...

it's all good

I will fight.
I celebrate life.
I can not predicate the course of my cancer.
I will live each day for what it is and give thanks that I got to show up.
And marvel at the beauty in it all.
Live in the light, not in the fear.

Breathe in. Breathe out.
It truly is all good.

take two

I see my oncologist every 6 months for an exam and routine blood work. My last appointment was in March (just before my trip to India) and everything was looking good. After I got back from India, I've had this nagging cough -- for over two months now. That is what sent me into the doctor's and what spurred me to follow up with my oncologist. A chest x-ray showed fluid in my lungs and a follow-up CT scan showed microscopic spots on my lungs -- but these are so small that it is unlikely that that is what is contributing to this chronic cough that I've had. The CT scan also happened to show the top portion of my liver, which was a bit more concerning. There were a few spots and a follow-up biopsy confirmed that the breast cancer has metastasized to the liver.

My doctor is quite hopeful because I haven't really had any issues typical of liver metastasis: jaundice, nausea, weight loss, etc... other than the cough, I feel pretty ok. This suggests that there is only a minor involvement in the liver, which would definitely be the best possible news. Any involvement in the liver is bad... but less is better. I go this week for a few additional tests to confirm this -- scanning my bones, my brain, and my abdomen. Provided those all come back ok, he recommends I start with hormonal therapy. That could mean no chemo! Because my cancer fed off of estrogen, many treatments are based on blocking estrogen in your body -- I was on tamoxifen for 4.5 years, which is a pretty long time. Given that success, he'd recommend an aromatase inhibitor (Arimidex, Femara, etc) + Lupron. The side effects of hormonal therapy are much more tolerable than chemo... so, he'd like to start there and, of course, keep a close eye on my liver.

What's next? I'm waiting to get all my follow-up tests scheduled. Hopefully we'll get that done this week. I'm also going to get an appointment for a second opinion -- either at Sloan Kettering in NY or Fox Chase in Philly. We'll take it from there. If all goes well, I could be maintaining a pretty close to normal lifestyle for the time being. Cancer is never good news when it comes back... but this is the best I could hope for.

While I've obviously been no good at updating my blog for the past two years, I promise to renew my diligence so that I can keep you all posted! More to come...

new home for my blog

crazy, right? looks like it is time to dust off the old blog so that i can keep my friends and family up-to-date on the latest.

my old blog host deleted my site (inactivity!) but with a little bit of magic from my techno-geek husband, we've recovered most of the old posts and even many of the comments... we lost most of the pictures that were posted, but i have those all on my hard drive and, depending on the time i have, i may dig up a 'highlight reel' and we can all take a quick ride down memory lane.

new web address, new look and feel... hope you enjoy it!