News from the Oncologist Visit

So, the big question people always ask me is when I'll be "in the clear" with this cancer thing.

The simple answer is: NEVER.

The better answer is: with every year that passes that I am cancer free, the odds increase that I'll stay that way.

The odds are better for me because my tumor is estrogen receptive which means the tamoxifen will help.  HOWEVER, pre-menopausal women, like me, have the worst odds because we're still producing estrogen...

UNLESS....

Dr. Chui puts me in a chemical state of menopause.

Which is what we're going to do, eventually.

Dr. Chui wants me to start the tamoxifen once I'm a bit more recovered from radiation.  (The deal we made is: once I can sleep through the night without waking up from the pain of the burn area, I'll start up on the tamoxifen again.)  Then, he wants me to do the tamoxifen for 4-6 months before I start getting monthly shots to shut down my ovary entirely.

There was a study in Austria where they did this with pre-menopausal women, and with NO chemotherapy, and the survival rates 5-8 years out were in the high 90s percentage-wise.  I like those odds better than without, so early menopause here I come!

All of this is reversible if we decide it is safe enough for me to attempt a pregnancy in a few years.  I'm less and less optimistic about that, but I still haven't given up on the dream completely.  We'll just have to wait and see what happens, I guess...like we are with everything else!

Kind of Cool

Ran across this site the other day, and thought it was kind of neat:

http://thetutuproject.com/

Different people react to this diagnosis differently.  Spouses even more so.  Like some of them run for president and have affairs (so, so disappointed in John Edwards I can hardly think straight!) and then there's this guy with the Tutu Project.  Sweet.

Appointment with Dr. Chui today.  Will post more about that later!

Is Ibuprofen a Food Group?

If so, I'm getting PLENTY of nutrition.

The internet and my radiation oncologist and my radiation techs were right: even though radiation finished last week, this week is no picnic.

There are a few spots that are officially oozing.  I looked for a good "primordial ooze" image to include here but it crashed my internet so you're out of luck.  (Bummed?  Yep, I knew you would be!)

In other news, this arrived yesterday from my son (since he's not yet 3, I'm assuming his dad gets some credit too):

the card reads, "Congratulations!  Here's to Weekends on the Dance Floor"

Say it with me now:  aaaaaaaaaaaaaaaaaaaaaaaaaaawwwwwwwwwwwwwwwwwwwwwwwwwwwwww...

AND I'M DONE

On Friday, by about 5:20, I was done.  Officially a graduate of Cancer College.  I actually felt like doing this:

I also felt like something really special should be done to mark the occasion, but I don't think G budgeted appropriately, because--honestly--I deserve this (as does everyone who has come before me and will follow me on this adventure):

I did arrive home to find beautiful flowers from my sis-in-law and bro-in-law:

We didn't do much in the way of celebrating that night.  I was (and still am) pretty spent.

On Saturday, my Mom, a friend & her daughter all spent the day working at the Yolanda House, a battered woman's shelter here in Portland.  The day itself was not ideal for me and manual labor but we all managed to chip in--we painted and decorated one of the rooms that will someday be occupied by a mother and child fleeing a violent home. 

Saturday night, G & I went out to see Bob Odenkirk (google him) live with a local improv group.  It was pretty fun!  Then Sunday we all went out to breakfast with some friends.  The rest of Sunday was a lazy day for me...

Now I'm back at work.  I'm still in quite a bit of pain--which is to be expected--and sleep last night was elusive. 

Which, by the way, I have to say is one of my new pet peeves--people ask me all the time, "Oh, are you back now?"  UM, HELLO!  I was never GONE!  Sure, I took time off to recover from major surgery, but otherwise I have worked this whole time and I admit I get kind of irritated when people ask that question!  (I feel comfortable complaining about that here, since none of the people who ask me that question read this blog....OBVIOUSLY!)

So, for those of you keeping track...my mammo / ultrasound / biopsy where the doc unofficially told me I had cancer was April 6, 2011.  I did chemo over the course of 20 weeks, a double mastectomy 4 weeks later, and radiation for 5-1/2 weeks.  My last treatment was March 16, 2012.

That's:

29,894,900 seconds OR
498,240 minutes OR
8,304 hours OR
346 days OR
11+ months

I have an appointment with Chui Friday.  I will post sometime after that his answers to your burning questions like, "What next?" "How long before you can confidently say your cancer won't come back?" etc.....

I think I sort of know the answers to those questions, but I'm going to wait to see what my expert says.

THE FINAL COUNTDOWN!!!!!

1

one more treatment to go, today at 4:10!!!!

Yesterday we removed the bolus, so I made it longer than the doctor predicted, but not all the way to the end...

I will actually miss my treatment team, but I will not miss the reality of the treatment. Undoubtedly there will be an adjustment period as I transition from ACTIVELY treating cancer to just taking some pills.  I feel sorry for the people around me who will have to listen to my crazy, paranoid ramblings as every twinge will for quite a while be me thinking it's the cancer coming back I'm sure!

Here is a photo of the most severely burned area this morning:

Yuck!!!

They say it will continue to get worse next week, and then I'll start feeling better.  Woo-hoo!!!!

To honor the occasion, my friend CC sent me these custom-made earrings.  I am wearing them today...

Thanks, CC!

And, I've sent an Edible Arrangement to my treatment team which I hope will arrive before I do so they know how grateful I am to them for their kindness.  There's lots of time during the set up to chat so I am a little misty that today will be the last time I see them...until my next check up with Dr. Marquez!

The Final Countdown

2

Still Using the Bolus....

although, if I had to guess I'd say today and tomorrow they will stop because it's official: the skin is breaking down.  Still not OOZING that I can tell, but there are different colors and textures going on now:

I feel like Ralph Macchio in "The Outsiders" after he and Pony saved those kids in the church fire.  Except, you know, it's just the one spot on my body as opposed to all over, and I'm not going to die alone in some crappy 1950s S.E. Hinton hospital...But if you hear me telling you to "Stay Gold" now you'll know why.

Incidentally, I was OBSESSED with that movie in the 4th grade.  I wonder why....

A shirtless Matt Dillon...even in my youth I was able to appreciate this

Oh the crushes!  Oh the fan mail!!!  Oh the crying every time I saw that movie!!!!!!!!!



The Final Countdown

3

today's appointment is at 4:10

still using the bolus.

met with Dr. Marquez yesterday who prescribed SILVADENE for post-radiation skin-soothing awesomeness. Can't start using it until this weekend, because it apparently goes on the skin "like frosting" and does not absorb particularly well.

I think I'm gonna need it!

And a shout out today to friend HH who recently discovered an aggressive tumor in one of her breasts. It appears to be "in situ" which means stage zero, but given the aggressive grade she is getting a double mastectomy today. Assuming the tumor is, in fact, contained within the ducts she will not have to have chemo or radiation so EVERYONE: FINGERS CROSSED!!!!!

The Final Countdown

4

today's appointment is at 4:10.

Yesterday they checked out my radiated area to determine if the bolus would stay on. 

Here are the comforting words I heard during the assessment:

"Well, it's not oozing yet, so I think we're still good to go!"

So, I guess I have oozing to look forward to.

In the meantime, here's another picture of my not-yet-oozy skin!



The Final Countdown

5

appointment today is at 4:20.

doc is going to check my skin to see about keeping or removing the bolus today.

the best description I can give about the skin is it feels like the worst sunburn in a world, and someone holding an open flame to that.  So in other words: it's AWESOME.

but I'm almost done!



The FINAL Countdown...

After today, I will have 5 more radiations to go! 

This week has definitely brought the discomfort of the burned skin. 

OUCH

 

 

I continue to slather on the calendula at least twice a day, and a new lotion, Aquaphor, at least once a day.  Next week the doctors may stop the use of the bolus which "tricks" the radiation into staying closer to the skin surface so that will help with the burns.  In the meantime, I'm thinking the "fatigue" that hits at the end of radiation is the result of the discomfort of the burns.  I'm tense when I'm awake and I'm not sleeping particularly well (despite loading up on pain killers of several varieties!)  I definitely hit a wall in the late afternoon, and I'm going to bed earlier and earlier!

In other news, I HATE MY HAIR.  Now, I want to say that I know 6-months-ago-me would punch present-tense-me for saying that because 6 months ago I would have given ANYTHING just to have hair.  But hear me out: my hair has come in so uncontrollably curly that I can't do anything with it.  I wake up in the mornings and it looks like I've (barely) survived a tornado!  And I don't have a hairdresser who I know locally who can do anything with this mess.  I have tried to dry it with a hair dryer to make it straighter but, really, it just makes it poof out.  Here are two photos of my hair so you can get a sense of the craziness:

So, if you know a hairdresser who can handle the madness that is my new-wave hair here in the Portland area, please let me know.

And join me, won't you, in the final countdown?

6

17 of 28 DONE

So I've hit the MORE THAN HALFWAY mark on this radiation thing. 

My skin is a lovely, fluorescent pink.  It's not terribly painful yet but it's starting to itch like a sunburn can.  When they take the sticky bolus off of me after treatment that can hurt, but nothing is unbearable.

Greg came last week to a session and took some pictures.  I had thought he would be able to stay in the room during the zapping and get some video but they're a little sensitive about accidentally radiating people there or something!  ANYWAY: here are the pix:

Here is the table I lay on--you can see my hands overhead.  There are little sponges under my wrists to help with the arms falling asleep--it takes a little longer now for the discomfort.  And that's Linnea, one of my rad techs.

Here they are lining up the green laser lines with my tattoos on my ribs.  I have to be perfectly "level" before they can begin my treatment.  After lining up the rib tats they move the table and get my clavicle tattoo lined up as well.  

A clearer picture of the green lasers, although at this point they're obviously not lined up on my tattoos anymore.  The large round blue thing hovering over me moves around me during the treatment.

There's a little snapshot of what my 28 treatments look like.  It's definitely just become a part of the routine now so it doesn't feel like the drag it did in the beginning.  And while radiation is no picnic, it's still better than chemo was.

It's hard to believe that two weeks from today I will be DONE with treatment!  I cannot wait.  But whatever will I do with myself then?

....I need to find a date to the Hunger Games on March 23rd!