Friday, March 30, 2012

Do not adjust your monitor...

There's nothing wrong with the color. This is really what I'm having with my lunch. The straw definitely helps get it down! Thanks, Jas!

Thursday, March 29, 2012

Feeling the Love!

I just wanted to put out a quick thank you to everyone for everything you've done.  The calls, the cards, the gifts from complete strangers!  Thank you to all of you who have put us on prayer lists - I can't tell you how much that moves me.  I've received flowers from Hawaii and meals from neighbors.  Classmates of Rory's have made plans to pick her up from school on days we can't.  Fellow health-nuts have sent links to recipes and websites.  And it is all so truly appreciated.  We are overwhelmed by your love and support.  THANK YOU!

Treatment Two

Yesterday I had my second chemo treatment and all is good and well.  My liver enzymes, which have just been climbing and climbing for weeks, seem to have stabilized somewhat after one treatment, which is very good.  My other labs all came back looking very very good for someone in chemo.  I felt completely normal the rest of the day and am feeling good so far today.  Two weeks ago I was exhausted for a few days, so I don't know if that will happen this time or not.

Here's what treatment looks like:
10:15am     Labs.  Have blood drawn to be sure I'm healthy enough for treatment.

11:00am     Meet with my doc.  They review how I'm feeling and my lab results.

12:00am     Go to treatment room.  They hook up my IV in my port, then I wait while three separate drugs        
go through it, one at a time.  Two are chemo drugs and one is a bone strengthener.  Each one takes 20-30 minutes along with lots of wait time, so we're there about 2 or 2 1/2 hours.  Jason brings me lunch, we hang out, etc.

The chemo rooms (or "pods" as they call them) have recliners for 6 people at a time to get treatment.  Usually I am the youngest one by far.  Yesterday, not the case.  Across from me was a 19 year old named Zach who had heart surgery last month for cancer that's in his heart and lungs.  Next to him was a 22 year old who has been at this for 3 years.  I started chatting with Zach's dad when he looked over at me and asked "I see you are getting chemo.  Why are you so cheery?  Are you just always this way?"  I explained that yes, part of it was my disposition and part of it was just my choice to focus on right now, always.  That's all I can control.  Plus, it's easy to be perky when you feel good!  It was good to talk with them, though, and see Zach laughing.  They said he's on the brink of feeling back to normal after his surgery, so he's on the mend hopefully.  When at treatment, Jason and I both always have a moment where we reflect back to the guy we met at my first chemo, who showed such a great attitude.  (read that post here).

Saturday, March 24, 2012

Our Crazy Food Adventure Begins

Cancer and cancer treatments are very, very complicated.  As a patient, it is easy to feel like if you just do exactly what the doctors tell you to do, you are doing EVERYTHING possible.  But we are finding that this is just not reality.  I have a wonderful oncologist.  The best.  Truly.  But his job is to get to know my cancer and figure out the  best way to beat the hell out of it.  

What that doesn't include is telling me the things I can be doing at home.  Luckily, over the last few years, Jason and I have been doing our own research about nutrition, foods that combat cancer (most things that are green), foods that feed cancer (most things that are yummy!), and what role stress, chemicals, and exercise play in preventing cancer.  

Let's be clear... just because I KNOW what's good for me doesn't mean I've done it.  I've been able to spout off research and studies left and right, usually with a bagel or Coke in my hand.  And now I'm kicking myself for it.  Just a little, though, since guilt and stress aren't going to make me feel any better.  

We have made a dramatic shift in the food in our house, though.  For those of you who don't know, about six months Jason and I watched a documentary called "Forks Over Knives", which is about all the ways the western diet feeds chronic disease.  It promotes a whole food, plant-based diet, which basically means going vegan.  About two days after watching this, Jason went full-on vegan.  No meat, no fish, no dairy, no cheese, no yogurt, no milk, no eggs.  If it comes from something that had parents, he doesn't ingest it.  I could not go that far, but I made some changes.

Then, with my diagnosis, we had to reassess again.  While I haven't yet gone full-on vegan, I have only had chicken probably 3 times in the last month, and salmon once, and that's all the meat.  I still have a little cheese here and there, but have moved to soy milk.  Rory LOVES the chocolate soy milk!  She's always been a huge vegetable and fruit eater, so she hasn't really noticed the changes.  We did buy vegan ice cream, which she believes is totally healthy and so therefore she can eat it anytime in her mind... "It says it's vegan, and I'M vegan, so I can have it, right" she asks at breakfast.  :)

I've started to choke down green smoothies Jason makes for me in the morning, and I've made vegan coffee cake and vegan cookies.  We have gained numerous new vegan cookbooks in the house and are finding new favorite recipes that make us feel good and can actually, ready for this... POSSIBLY SLOW OR REVERSE CANCER.  Yep... there's research to support that.  So, I'll do it.  Feel free to join us on this crazy food adventure!

Saturday, March 17, 2012

Back to the Living, Sunshine World

I eased back into work after two weeks away, as did Jason.  His mantra at work has been "I work when Jill works."   (I'll write another post on how amazing he is another time.  He doesn't read this blog, so I'm sure he won't mind if I gush a bit!)   It was SO good to get back into the office, even though my energy only lasted for about an hour and a half the first day.  It's amazing what it does for you just to have somewhere to go, to put on clothes that don't begin with the phrases "sweat-" or "yoga-", and put on some make-up.  And to see everyone at my office again was refreshing!  They've been so wonderful to us! By Thursday and Friday, I was back to full days and feeling back to normal completely.

I'm feeling good and looking forward to a whole week and a half with no doctors!

Friday, March 16, 2012

Tests, procedures and treatments.... Oh My!

The last couple of weeks have been a bit of a blur.  Between March 5-March 14, I  had an ultrasound, a CT scan, a bone scan and a liver biopsy.  My diagnosis was finalized and treatment was planned with my oncologist.  I had a chemo port implanted in my chest, and completed my first chemo treatment.  Yep - all between March 5-14.  Needless to say, my body and I were both exhausted!

 Here are a few pics of procedures.  I know it may seem odd to take pics, but it helps me document things, and hopefully also give people a sense of what we're spending our time doing at Siteman Cancer Center all the time!

Jason and Mimi waiting outside as I headed into my liver biopsy.
They laughed when I came out on the gurney texting on my phone.
Bone scan.  I had them cover my eyes because I'm claustrophobic.
 Don't want to see machines that close to my eyes!!
This one was weird because they strap you to the table.

Hanging out at first chemo.

First chemo.  Everyone in the room had to wear masks when the
connected my port.  Then we removed them, hung out and had lunch during treatment.
I even got to watch The Gilmore Girls!

Wednesday, March 7, 2012

Once Just Wasn't Enough...

This is the email I sent out to many family and friends on March 7.

Hi everyone,

Sorry to share this via email, but honestly, it's just efficient, and I know many of you have been waiting for details.  For those who hadn't yet heard, last month I saw my oncologist for my regular check-up, and they found that my liver enzymes were elevated.  We've done a number of tests and today we saw the oncologist.  The good news two-fold:
1)       We have a plan, and
2)      I get to keep my hair this time!
 Unfortunately, my breast cancer has returned and it is in my liver and possibly in my spine.  It's aggressive, but I will begin chemotherapy next Wednesday and will be doing chemo every two weeks for probably six months.  Luckily, this chemo won’t have nearly the side effects of the first time, so will be hopefully very easily tolerated. They say that the more aggressive cancers typically respond the best and quickest to the chemo.  

Tomorrow I will have a bone scan and Friday is my liver biopsy.

To be honest, it's not good news, but we will just do what they tell us to do day by day and hope for the best.  The doc says he has a number of patients in my situation and on this same chemo regimen who have been healthy for years and are running marathons.  We are feeling very positive at our house.  Thanks for all your prayers … just keep ‘em coming!

We have a great doctor who is on the cutting edge of research, so we are in good hands.  If you find I've left anyone off this email, please feel free to forward it.  And, I will be starting to post on my previous blog again with updates, so you can always check for updates.  

Also, Rory does know the basics.  She knows my breast cancer has returned and that I'll be going to the doctor for medicine.  We've been very matter-of-fact with her, so we appreciate your help in being positive and light around her if you are here in STL.  

Love you all!

Sunday, March 4, 2012

Ignorance was bliss

I can't believe it's been a year since I've written a post on this site.  Well, it's time.

I'm still getting checked out by my doctors every few months at this point, with mammograms every year.  At this point these are all routine now, with a level of non-eventfulness that I appreciate.  Yet one of these routine check-ins has recently led to a little stress.  A handful of weeks ago, my routine blood work showed that my liver enzymes were very elevated suddenly.  I get this blood work done every six months, and six months ago all was normal, but not so now.  There were only two changes in my life during that six months I could recall ... I had started taking a medication from my dermatologist, and I had started taking a handful of supplements under the supervision of a naturopath.

We took out one, then another, for about 5 weeks until they were all gone, and yet my liver numbers continue to climb.  I have figured out where my liver is in my body because I can feel it now.  It's slightly enlarged (which goes hand in hand with elevated enzymes), so I feel very full as the day goes on and my appetite is low by the end of the day.  So, tomorrow I have an ultrasound scheduled and Tuesday I have a CT scan.  There are many, many things that can cause elevated enzymes (possibly including Tamoxifen, my anti-cancer med) so everyone is reminding me not to worry.

The last time I was having tests like these done, four years ago, I was blissfully ignorant about the possibilities.  It's different having these kinds of tests now.  Don't get me wrong - I'm not all gloom and doom right now, just more experienced.  It's part of being a survivor, having experience that will no longer allow you to be blissfully unaware.  

I'm optimistic that getting things checked out regularly will lead to a positive outcome.  I'm optimistic because I've met other breast cancer survivors who went through periods of elevated liver enzymes for no explainable reason.  I'm optimistic because my oncologist didn't freak out or order tests immediately when my enzymes were first elevated.  And yet there will forever now be a part of me holding my breath at moments like this.