Wednesday, April 30, 2014

Eh, Sometimes I'm Right, Sometimes I'm Wrong

What a whirlwind of a week so far!  Lots of information and tests have been flying in every direction. After getting blood tests done before my MRA last week, I got stuck again for more blood tests on Monday.  Immediately following, I met with the Oncologist to discuss our next steps in keeping cancer away.  This is where I got some things wrong.

I was under the impression, as I wrote in a previous blog post, that the Herceptin I get every three weeks blocks estrogen.  That is not true.  It blocks the HER2neu protein.  HER2neu is involved with normal cell growth, but also makes my particular type of breast cancer grow.  It's what they call targeted therapy for HER2neu positive breast cancer.

Then I've talked about the other drug the doctor wants to put me on, Tamoxifen.  I "thought" this drug was to put me in menopause and keep me there.  That is partially true.  Tamoxifen blocks estrogen from getting to certain types of cells, like breast cells.  Sometimes the side effect is menopause, sometimes not.  And for the record, I am not currently in menopause as I thought.  The chemo temporarily paused the hormone cycle, but according to the labs, my body is back to producing estrogen.

But because I had complete pathological response and the cancer is gone, Tamoxifen now becomes one of those things (like radiation) that they really don't know if I need, but have always done it.  The doctor wants me to try it, and I have agreed.  The side effects can be brutal and painful, and he said I may want to kill him a couple weeks after starting, but just to try in case it can help.  He said that 1 in 100 stop taking the drug, and that is a very low amount for them.  I'll start it a couple weeks after the surgery and will update later.  But if I cannot take it for some reason, it may not affect anything anyway since the cancer is gone.

Also, according to my labs, I'm am back to being VERY Hypothyroid.  I've been taking thyroid replacement since 1998, so it's no surprise that was the case. But I had weaned myself off the medication and increased iodine in the hopes that it was due to an iodine deficiency.   Unfortunately, over the past three months, my thyroid levels have increased exponentially, and I've been seeing the evidence in symptoms like fatigue and puffiness (yes, that is an actual symptom).  The good part is, I gained about five pounds, so that will help with the upcoming surgery and having enough "extra" to make a new breast.  Meanwhile, I started back on my thyroid medication today, and I'll still continue to take the iodine as that definitely helps with energy levels.  Hopefully my hair will grow back in even faster and I'll shed a few pounds after surgery too.

The Oncologist also pointed out that my plan of following common sense doesn't always work when it comes to medicine.  What works in petri dishes and mice doesn't necessarily translate to humans. What you think will make sense to take (ie supplements or medication) may in fact do the opposite of what you want.  There's never enough science or testing to make anything surefire or foolproof.  Hell, even the placebo effect has been proven to work.  So, nobody really has all the answers.  We're just doing what we think is right and pray that it all works.

They are trying to conserve what veins I have 
left in my arms so that I don't have to have a 
Picc line put in for the rest of my infusions.

Anyway, after that frank and slightly depressing discussion, I headed back to Spartanburg today for Pre-op at the plastic surgeon and the hospital.  OPERATION NEW BOOB will commence on May 6th, and I had to register, do MORE blood tests, sign consent forms, have an EKG and Chest X-Ray.  They also explained, in detail, everything that could possibly go wrong during or after surgery.  I have to say, after five hours of this, I was feeling a little nervous.  But I trust the plastic surgeon and I know it will work out.

Speaking of the plastic surgeon, one of things I actually got right was requesting the MRA last week instead of the CT scan.  Not only did I save myself on the radiation, but the doctor was very pleased with the images and would like to start using that for future patients.  Apparently, it took half the time for the procedure as well.  That was a proud little moment.

Yep, that's my boob, just laying on a counter, while I do a chest X-ray.
I made the tech feel it too. She said it felt real. 

All in all, the plan is falling into place, and I am on track to a new, super-fly, cancer free body and getting back to being mother to my children.  They have, and always will be the goal, motivation and strength during this whole process.   Not long now!!!

What my body will look like after surgery,
as evidenced by a Wonder Woman apron
that my sister sent to me.

Tuesday, April 29, 2014

So worried...

For days, the muscle under my arm has been really tight, and I've had to keep reaching my arm above my head to stretch it. It's so tight that you can see it through my skin. But I couldn't understand why there would be a bruise on top of my arm each time I stretch. Now, after three days, I realize it's not a bruise, it's my eyebrow.

Friday, April 25, 2014

Take a Breath

Life has gotten crazy busy!  I know it will slow down soon enough, but I'm actually enjoying the chaos while it lasts.  You would not have heard me say that a year ago.  I would have been overwhelmed by the thought of so many appointments, meetings and friends.  This is a new normal now.  I've become one of those busy people that is always doing something.  And I love it!

I love spending time with my friends, old and new.  I love getting out of the house every day, even if it's for a medical test.  And I especially love getting my hands dirty in the yard.

This week my neighbors helped me big time with a garden in my back yard.  They built garden boxes and filled with dirt.  Then I got seeds, plants and fruit trees and got it all in the ground.  Then another neighbor set up a sprinkler system for the garden.  I swear I live in the best neighborhood.  And I'm excited to start growing my own fruits and vegetables!

Then I went to dinner with my good friend Brenda last night.  As soon as we walked in to the restaurant, I recognized my friend Crystal who works at the cancer center.  And then, while we were eating, a familiar face came over to the table.  It was Joyce, one of the nurses that helped me when I was first diagnosed with cancer and was getting my chemo port put in.  She paid for our dinner!  I am constantly floored by the generosity and kindness I see on a daily basis.

My new shirt from my friend Cherry.
It says, "I make cancer look sexy!"
Here I make cancer look tired because I was up
too early and not allowed to have coffee before the test.  
So, back to the busy talk.... this morning, I got up before dawn to head to Spartanburg for my MRA.  It's like an MRI, but looks at veins and blood vessels.  This test replaced the CT scan the plastic surgeon needed before surgery.  We went with the MRA to avoid more radiation exposure.  It amazes me how far technology has come.

These are the abdominal blood vessels that will be used
to re-establish blood supply to my new breast during my upcoming surgery

These are my guts....because it's awesome

And I thought this was cool.  They use your palm to identify patients.
I asked her about my love life, but she said the machine doesn't read THAT well.

After getting lost in the armpit of Spartanburg for thirty minutes, I finally made my way back to the other side of town to do my special Echocardiogram that looks at strains.  I asked what the strain test was, and basically, the way I understood it was, there are band-like fibers that surround the heart.  When the heart contracts, the bands twist and squeeze.  The test looks at the function of those bands.  As far as the actual function of my heart, all seems to be well, and the Herceptin doesn't seem to be causing any toxicity.  That's fantastic news!  It must have just been a temporary spell of Tachycardia a couple weeks ago.   Here's a video of my heart beating.  You can see all four chambers of the heart.

Next week continues with more appointments as I prepare for my upcoming surgery.  I meet with the Oncologist on Monday, the breast surgeon on Tuesday,  the plastic surgeon and hospital pre-op on Wednesday, and I have my monthly dose of Herceptin on Friday.   Add Eliah's IEP meeting for school and my dad and stepmom arriving Friday, you would think that's enough for one week.... but it's not.

There's one more thing I'm super excited about.  When I first found the lumps in my breast and armpit, I contacted Susan G Komen Foundation for help in getting tested.  A woman named Robin Aiken was able to help me and get all the information I needed.   I couldn't have done it without her help.

Well, to get to my point, she has been following my blog and my cancer journey since I was diagnosed.  And she contacted me a couple weeks ago with a request.  The 20th Anniversary Susan G Komen Race for the Cure is coming up in September, and Robin asked if I would be a part of their marketing campaign this year.  I am so honored to be asked to join other survivors in talking about their journey.

So next week, in between all the medical appointments, we'll be doing a professional photo shoot and video interview.  They'll even be asking about my journey and my blogging experience.  So my hope is that word spreads and others can use my blog, whether they need it for guidance, inspiration, or just entertainment.  And to top it off, I'll have my own Race for the Cure team!!  I'll need lots of people on my team (minimum 20), so plan on signing up as soon as I get the team page set up on Facebook.  

Reconstruction surgery happens in eleven days!!  Things have been getting better and better, and this next step will hopefully be the icing on one very delicious boob cake.  

Wednesday, April 16, 2014

Yes, But Does it Squeak?

You'll all be pleased to know that, as of today, I have an official breast prosthesis.  No more socks, bags of jelly beans, or dog toys.   This is the real deal.  It even came with it's own cradle to sleep at night.  Now, if I could just get the nipple to face the right direction, I'd be set.  I look like I've got a wonky eye.

The little store was so cute, tucked in a corner of the cancer center.  The shelves were filled with boxes and boxes of bras and breast forms.  It was like when Harry Potter was looking for a magic wand.  And the lady that helped me was so kind and funny.  It was fun picking out a new boob!

Anyway, I'm excited to try it out.  And with all this new hair, I keep getting stopped by people telling me how great it looks.  I think I'm going to need a date!

And the countdown is on for reconstruction.....less than three weeks!

UPDATE:  It's really squishy and I can't keep my hands off it!!

Tuesday, April 15, 2014

Tick Tock

Like clockwork, something hits me every three weeks.  I don't know if it's remnants of chemo, since I understand it stays in your system for three months.  It could possibly be the Herceptin or something else entirely.  But every three weeks, I get knocked down for several days.

It starts with fatigue, then all over body pain, sometimes so bad I can barely move, dizziness, weakness and shortness of breath.  It lasts 3-5 days and feels almost like when I was getting chemo.  Luckily, it's not nearly as intense.

Thursday of last week, I went to the park, and after climbing a set of stairs, I had to rest to catch my breath.  By the time I got home, I had to sleep for a couple hours just to be able to function again.  I thought I was just really out of shape, even though I've been on the treadmill daily.  But then Friday morning, while sitting on the exam table at the breast surgeon, they clocked my heart rate in the 130's.  I realized that my exhaustion the day before was from Tachycardia not from being out of shape.

I had the same issue when I was on chemo and was the reason I started on a heart beta-blocker in October.  Now that I'm on Herceptin, which can also damage my heart, there is some concern that there may be toxicity issues.  If that's the case, we would need to stop the Herceptin and try to repair the function in my heart.

Due to the elevated heart rate, being short of breath upon small exertion, and even waking during the night to catch my breath, I met with the cardiologist this morning.  He wants to do a more detailed echocardiogram which looks at strains.  It's a newer, more precise imaging tool that looks at the myocardial function of the heart (blood flow and muscle use).  I should be able to do that in the next week and get the results soon after.

Meanwhile, I'm on the way back up with energy.  The body pain is slowly getting better.  And I should be back to "normal" in no time.  One day closer to cancer being behind me. 

Friday, April 4, 2014

A Day in the Life....

How do I pass the time?  I read a LOT.  I research.  I write, and clean, and work out, and see friends, and sometimes the fatigue takes over and I sleep.  And some of this stuff....

I visit Eliah at school, and he tries "really" hard to tell me stuff....

Some days I visit Natalie at school....

Some days I get to work in the yard....

Some days I sit in doctors' offices....

Sometimes it's because of injuries...

Like this broken vein a couple weeks ago...

I've also had to go back to the breast surgeon twice to drain a seroma (build up of lymphatic fluid) that developed at the mastectomy site...

And today's injury...

A stress fracture in the side of my foot, on top of an old break in the same spot...

I slipped in doggie drool and took a header in the kitchen

Have some more radiation with your injury

But my favorite times are when I get to just hang out with my family and my friends....

Thursday, April 3, 2014

New Boobs for Everyone!! Okay, just me...

Reconstruction surgery is now on the schedule!  May 6th!!!  It will be in Spartanburg, almost an hour from my house.   The surgery will be around 8:30am and will last approximately six hours.  I will be there 3-4 days minimum.

Before the big day, I'll need to do a CT scan for the doctor to see my veins, although with all the radiation talk, I requested an MRI.  We'll see if that can happen.  And then I will have to drive up there for Pre-op the week before.  Then once again the day before, so the doctor can draw all over me.

I'm so excited I could bust! (pun intended)  If you're interested in the details of what they are doing, the following link shows the extent of the procedure.