Quick! I need to patent my tapestry-filled healing palace!

SF, from high school:  I don't know if your mom reads the blog, but she sent me the most lovely bracelets today!  I wore them to my scan for good luck.  I'll try to get a note in the mail to her.  Thank you!

A (sis):  I wore the turtle bracelet for good luck, too.  

Oh man, I can't wait to tell you about my thrilling brain MRI results!  Remember how I told you, because I had been told by allll the doctors, not to expect any changes out of Lloyd yet?  Because not enough time has passed and so even though the radiation will have killed Lloyd, my body will not yet have reduced him in size?  WELL...they all were WRONG in my case!!  SO unbelievably wrong!  They clearly have not toured my tapestry-filled healing palace, nor have they met my hungry absorptive orchid, nor have they beheld my yellow paintbrushes, nor have they encountered the healing power of carnation nation!!!

MY body has reduced Lloyd by 75% ALREADY!!!!  75%!!!!  This is amazing for at least two reasons:  1) little to no reduction was expected so soon (as mentioned already), and 2) at the outset I was told to expect 50% reduction in the size of Lloyd.  So not only has my body reduced Lloyd's size in Olympic-record speed, but it has also done so at a greater-than-expected magnitude.  Huzzah huzzah huzzah!!  All of our hard work has paid off, guys!!!

You KNOW I have pictures!!!  Dr. Radiation Oncologist was so excited to show them to me!  My sisters were at the appointment with me, and although I was totally engrossed in the pictures, my sisters were watching Dr. Radiation Oncologist, and they said that he was like a proud papa:  scrolling through the images; finding the best images for me; then smiling, rocking back on his heels, and folding his arms when he paused for me to take a photo. 

Two frames of my brain that compare Pearl (left) to Lloyd (right).  Pearl and Lloyd are the white blobs in the center-left portion of my brain frames.  Note that Pearl has retreated from the midline of my brain, hence the complete disappearance of my headaches!  Lloyd can be seen to be pushing up on my brain midline, which was causing the headaches.  The image of Pearl is from today, and the image of Lloyd is from late December (my first Lloyd scan).  

75% reduction, guys!!!  Unbelievable!!  One of my sisters asked if my body will keep shrinking the tumor or if the best result has already been achieved, and Dr. Rad Onc assured us that yes, my body will continue to shrink the tumor down, so the next scan will reveal just how small I can make that Pearl.  How low can I go?  This is my new healing challenge, after I get through the steroid-step-down and brain swelling challenges.   

After the Lloyd result had been shared, I asked about the brain swelling, because you can kind of see the swelling around Lloyd here but you can't really see any swelling around Pearl.  But I can still feel it!  So he pulled up some different images that show the swelling better than the first images.  It's still rather hard to see, so I tried to draw circles around the swelling.

Two frames of my brain that compare the swelling around Pearl (left) to the swelling around Lloyd (right).  It's really hard to see the swelling around Pearl, so I circled it in blue (none of the colors showed up very well).  To keep things even I circled the swelling around Lloyd, too, but of course it didn't really need it because the Lloyd image is a bit high-contrast (I had no control over this).  The image of Pearl is from today, and the image of Lloyd is from late December (my first Lloyd scan).

When I saw how scant the swelling is around Pearl, I asked if it fluxuates or if I'm imagining things when I seem to experience a difference in brain swelling as my day progresses?  As in, as the amount of steroid decreases in my body between doses, does the brain swelling increase?  Because that's what I feel is happening.  He said that oh yes, that is certainly what's happening.  So the amount of brain swelling shown on the scan is the amount of morning brain swelling, which is a bit less than the amount of early evening brain swelling, right before I pop my 'roid.  Fascinating. 

I asked about evidence for necrosis, and he said that it's too early to tell that.  Huh.  I had thought that that was one of the purposes of today's scan.  So if it's too early to visualize necrosis, and it was supposedly too early to visualize shrinkage, what WAS the point of today's scan?  I must be confusing some aspect of what I thought I'd been told.  Well, regardless, today's scan and results ended up being QUITE exciting, didn't they, and I'll take it!    

And that was the end of the appointment.  He clearly was very pleased with this result, as was I.  He said he'll see me again in three months, when we'll do another brain MRI!  Huzzah!  

Then I proceeded to have a lovely midday with my sisters, who had both taken the day off from their jobs and motherhood to take me to these appointments (thank you!!).  They did my Leslie Sansone walk in my living room with me (which for them is like a warm-up to a real workout, lol), then we made gourmet nachos for lunch (tortilla chips, cheese, veggie taco meat, beans (for those that could--you know I snuck some since I didn't die the other day), salsa, avocado, greens).  A good time was had by all.  

I can't end this post without a quick shout out to the Medical Physicist who spent 12 hours planning my stereotactic radiosurgery (SRS) treatment plan to kill Lloyd.  He did an awesome job, methinks.  His treatment killed all of Lloyd so thoroughly that my body could get in there and rapidly start cleaning him up.  I am deeply grateful to both the Medical Physicist and Dr. Radiation Oncologist for their excellence.

Reflections

As I frantically try to organize some fun to ring in the new year, I am reminded of what I did or did not do last year at this time and why.  I remember the fog of fatigue and nausea that rolled me into 2011.  I remember the brain scan in January, the metastasis scare in February, the mastectomy in March, the biopsy in April, the last day of radiation in May, and finally the summer of recovery that led to the most glorious fall.    

My reflections reminded me of my favorite houseplant.  In college I started the plant from a cutting from home, and it moved with me from the dorms to apartments, from upstairs to downstairs, from North Carolina to Wisconsin.  But when the plant and I finally moved back to Iowa in April 2009, I mistakenly thought it would be okay on the porch overnight.  It froze.  It died.

Just when I was about to throw it out, I saw something amazing.    

It was growing again!  From the center of death and decay sprang a tiny, vibrant leaf.  Over the past two and a half years, this single leaf has given rise to my old favorite plant. 

I feel like the beginning of 2011 was the center of my death and decay.  But look what has sprung forth this year in my life:  from activism (three state proclamations in support of IBC awareness) to career accomplishments (five accepted publications) to family joys (two potty-trained darlings)!  I have overcome the trauma almost as effectively as my houseplant.

Here's to the end of a trying yet remarkable year.  Happy 2012 to all of you!

Beautiful survivors

Maybe you've already heard, but former first lady Betty Ford passed away last Friday.  She overcame some remarkable difficulties in her lifetime, including breast cancer and drug addiction.  She founded a center to help people overcome their addictions.  This of course is an excellent contribution to society, but I am naturally drawn to her courage in the face of breast cancer.  She was a model for how high to hold your head during and after breast cancer treatment.

Another beautiful survivor I recently encountered is Matuschka.  She became famous in 1993 when her self-portrait appeared on the cover of the New York Times magazine.



Isn't she amazing?  Apparently this was a highly controversial photograph, and I am interested in reading more about the controversy because I don't see any place for controversy.  I see nothing but beauty.  Clearly I am biased.  I'm guessing that the "damaged" part of her body is just more than most people want to see.  I'd be interested in hearing what you think.

I was pleasantly surprised by her choice of wearing white.  If it were me, and it might be someday because it would be fun to replicate this photoshoot, my instinct would have been to wear red.  Red isn't even my color, but it would be dramatic and angry and representative of how I felt for a long time.  In contrast, I love that the white dress represents purity despite the damage.  The slim, angular dress adds an element of sexiness, and the flowing scarf invokes femininity.  Yep, red would have been totally wrong for this image.  I guess that's why I'm not an artist.        

The whole article published with the above image is an interesting presentation of the status of breast cancer awareness up to 1994.  One of main things I took away from it is how very personal breast cancer is:  all of the main supporters of awareness and research have been touched by breast cancer.  Tom Harkin, still a senator of this great state, was the champion of a huge increase in funding for breast cancer research in the 90's.  It seems that he was driven by the loss of two sisters to the disease.  This blog and I are certainly an example of breast cancer awareness driven by personal experience.  I suppose this is not surprising, because people care about what they know about.  I think I just never thought about it before.

Cheers to you survivors and supporters out there!  You are all beautiful!