New Treatment Plan

So, I think I'm ready to post about Monday 11/28/2011.  Eleven days cancer-free and the day the "latest" treatment plan.  I don't know why it seems like such a big deal...as I look back, I have made these type of decision too many times!  Remember when my Baylor friends staged an intervention to light a fire under me to get treatment started?  That was supposed to be the big decision: chemo versus surgery.  How many treatment decisions have I made since then.......Too many to count!  And of course it always seems like the current decision is the most scary, or important, or biggest decision of all.

So, just to let everyone know the typical treatment, for each "diagnosis" I've had, the general plan has been a combination of surgery to remove the tumor, radiation to clear the local area of the cancer and chemo to clear the possible wide spread of the cancer.  For me, surgery was really scary, but chemo no, so chemo is always an "easy" choice for me.  Turns out, radiation is really scary for me too1  When I was recommended to do radiation on the original breast tumor,  I was shocked.  My breast surgeon and medical oncologist had prepared me that I didn't require it (I only had 1 lymph node positive out of 11 that they took).  It was my radiation oncologist and her conservative recommendation regarding new research out of Europe that put radiation on the table.  It was not something I was planning on (and it delayed the reconstruction plan!)  It basically messed up a lot of stuff!  But I remember thinking:  "I've been super aggressive up to this point.  I've done 2 surgeries so far.  I would regret not doing radiation if the cancer ever came back.  So I decided on the radiation.  I haven't told anybody this, but I cried for the first week for every session.  The techs were so sweet to me, giving me lots of hugs and sitting down and trying to comfort me.  It is a really lonely experience to do radiation and I think that's why its so scary to me. At least with surgery, I have versed and don't remember anything!  With radiation you are alone in the room, can't move, surrounded by huge machines shooting invisible poison at you.  I just remember feeling so alone and scared.  David and I had a little self-counseling session and after that I felt better.  I didn't cry anymore during treatment.

Just as a side note, the treatment decision for the recurrence were actually the easiest decisions I've made.  No struggle or problems with that surgery, radiation and chemo plan.  Of course, I didn't have time to do the chemo before the 3rd round hit!

So, here we are now at round 3: Stage IV breast cancer with brain metastasis.  What people say is the "scariest type", or "least researched", "fewest options" Whatever.  IT's all scary and it's all with the fewest options!  I feel actually really lucky because it is by the grace of God that I even found this out.  I really didn't have any symptoms to do a brain MRI (I had a single headache after a new drug - that usually is considered a routine side effect!).  I could be running around right now, oblivious to growing tumors in my brain and doing the same old junk I was doing before.  Now I have the knowledge about the important things in my life: relationships!

So, back to round 3.  Same general treatment plan as before: surgery (not so scared of that now!), chemo (never scared of that), radiation (Ohh, I"m scared of that!)  Why is radiation even scarier now?  Cognitive function!  I consider myself a pretty intelligent person (Okay, yes...I am a know-it-all!  But, I make everything sound so good! .  

{{Side note - that emoticon just took me 30 minutes to figure out how to do.  There will NOT be any more!}}

SO, back to radiation to the brain.  David and I did a lot of research and thinking.  Do we do it now? Do we watch and save it for any future growth?  How will it affect me?  Will I still be me?  Will my words still be "manna from heaven" as I've joked they are?  Will I always have an answer for everything?  Because come on now - you all know that that's how I am!  Right or wrong, love it or hate it, but that's me.  Would I still be me if I did radiation?

That's the clincher.  Everything else I've done hasn't affected who/what I am.  It's affected how I look.  That's nothing - looks change.  Whether you have a boob or not, have hair or not, have burnt skin or not, doesn't change you.  Brain radiation might.  It affects memory and cognition.  I teach classes, I need the words to express the concepts.  That's what I feel is one of my gifts, being able to explain difficult concepts in ways that people understand.  Would I still be able to do that?  Should I hold off the possibility of losing that to when/if (because it might never come back) any tumor comes back in the brain.  I mean right now - I"m cancer-free!  Should I just trust in God to keep me this way?  Trust his plan?  If I had faith, isn't that what I should do?  That the tiny mustard seed of my faith will move the mountain of cancer from my path, never to raise again?

Or is it my duty to do the work.  Do the steps necessary to prevent a recurrence.  Do my obligation as a faithful Christian?  This is more the direction I believe in.  I remember a mass I went to where the reading was about a blind man who was waiting at Jericho as Jesus walked by.  He was beseeching Jesus to cure him.  People were pushing him aside and telling him to be quiet, but he was persistent and keep asking until Jesus found him, brought him to his side and asked him what he needed.  The man asked for sight and Jesus healed him.  He was faithful, obedient to the Lord, persistent and courageous in the face of so many obstacles.  That is why Jesus healed him.

That's more what I think I need to do.  Like what I've done with all the decisions so far: be aggressive.  Do the nasty work that has to be done, do the medical treatments, plus living right.  I haven't moved into the highly experimental or alternative treatments yet, but hey: I"m still young! We'll see what happens!


So, I'm so glad I just wrote that.  It just really cemented the decision for me.  Helped me accept what I need to do.  I guess maybe I have more willpower and self-control than I ever though I did.

Okay - so back to the realities of the day.
Went to see my medical oncologist.  I gave pictures of the family to the front desk at Texas Oncology and to Dr. Harth.  I have such a beautiful family and they have never seen them.  I think they really appreciated that.  Also, they set up the girls on the angel tree, so now they get to see what they look like.  Fortunately, the pictures were taken before my face turned into a circle from the steroids, so even I look good!  Dr. Harth recommended whole brain radiation, said we'd discuss a chemo plan with the Baylor guru, but that would happen after radiation, started me on my steroid taper (I love her for that!) and made plans to follow up on the Tykerb medication (which is for HER2 and crosses the blood/brain barrier), and to continue on the weekly Herceptin.  I told her that she won't be able to retire, because I won't take another doctor and I'll be here for like another 30 years!  It was a good visit and I am so happy about my treatment team.  I really feel like she understands what I need (information) and is good about giving it to me, or giving me the second opinion options.  The final piece of information she gave me was the results of the molecular studies that were sent out with the recurrence.  This is some very technical information that I don't really understand.  It basically looked at all these biochemical markers of the tumor and then what current drugs will work the best.  The Baylor guru requested them and they are probably more for retrospective research than active treatment.  However, as I sit and read the report, here's the "high points"

• My tumor isn't strongly HER2+.  It's just a "little" positive.  They just point out that Herceptin might not be highly effective, although Tykerb is a recommended agent.
• I may have some benefit with anthracycline-based therapy (which is the Adriamycin that I first took, but platinum-based therapy probably won't work well.
• There are a couple other drugs that are options for the type of biomarkers I have (gemcitabine, desatinib, sunitinib), so I have options if the cancer comes back somewhere.
• 2 biomarkers "suggest a shorter recurrence-free survival, overall survival, poor prognosis, early recurrence and shorter disease survival"

So, wow...what to say about that.  I don't think anything.  I didn't read this information until after I had made the decision about radiation.  So, I think this just seals the deal that I need to be as aggressive as possible now to reduce the possibility of recurrence.  I think it brings around the same discussion that I've had with myself frequently.  These numbers are general statistics.  They are not me, they are not individual.  They really don't mean anything to me personally.  My time is dictated by somebody else.  If he has a plan for me, (which is what everything points to), then it doesn't really matter what the statistical prognosis is.  I will be around for those 30 years because that's the plan.  OR, take away a cancer diagnosis and I get in a car crash from distracted driving and I'm gone tomorrow.  Nobody knows the answer to that question: how much time?  So, I think after today, I'm gonna file away that report and not look at it again and continue my walks every day where I thank God that I have today and promise to make the best day possible.  To make someone smile today.  To be polite in the face of rudeness, to make a difference in someones day with a smile or a hug or a sincere "How are you."  That's what makes me feel good.  That's what I want to accomplish every day.  (Gosh, how life gets simple when you think like that!)

Okay, back to details: went to my physical therapy appointment for my left arm lymphadema.  It was so nice!!!!! It's like a little massage!  But I definitely needed it!  That stupid arterial line (which didn't even work!) made my arm swell up and after the appointment is definitely felt smaller.  Thanks Jenn!  I'll be making my twice a week appointments and keeping those!

Then I went to the second opinion for radiation at UTSW.  IT was a long wait, but the information was definitely what I needed.  Some good points that helped me: in his opinion, breast cancer metastasis to the brain recurs about 50%.  Radiation to the brain can reduce that to 20%.  The cognitive issues can be addressed by doing radiation dosage over a longer time period and potentially avoiding key areas.  For young breast cancer patients, cognitive function is not as impacted as with the lung cancer patients (cuz those people have been smoking for years and smoking impacts the brain function).  Also, since I already function at a high level, am young, don't have other disease, I should have less impact that any research/data would suggest).  He said there are options regarding just localized radiation to the surgical area, but that doesn't address recurrences in other parts of the brain.  Same thing with watching and waiting.  You do scans every 3 months and watch for any symptoms of a tumor and try to "catch it quick".  Of course, there is no guarantee that when/if it grows back it will be "treatable".  Meaning it might be in a bad location or have too many to treat locally with surgery or targeted radiation.  So, basically there is risk either way (DUH) and I have to be good with the decision.  He didn't recommend either option to me and to be honest, I didn't ask.  I think when he asked the question: What is your biggest fear, I knew what my decision was.  My answer was "Recurrence".

So: recap:

• Finish surgical recovery
• Continue with Herceptin and get started on Tykerb
• Continue with project healthy living: diet, exercise, positivity
• Start whole brain radiation in December
• When radiation is done, do chemotherapy (drugs to be determined)
• Be a good christian, have faith that the "3rd times the charm" and I will be cancer-free forever more!

Thanks for putting up with the extremely long post.  This was very cathartic for me and I feel alot better right now than I did when I started this post.  I'm gonna go back to sleep now actually!  Good night, God Bless, and thank you so much for family and friends.  I couldn't do it without y'all!  And that is the truth!!!