Monday, July 30, 2012

Finally A Plan

Finally, a plan.

So went for the MRI last Thursday.  and Friday.  On Thursday something got messed up and they had to repeat it on Friday.  Monday went to see the gyn for my annual exam.  The MRI results were not in.  She and I had a long talk about my situation.  I was very resistant to getting a BRCAnalysis done.  This is a genetic test to see if you carry the BRCA gene.  She asked me how many females there were in my family.  I only have 2 sisters, who don't speak to me-or my children, but that's a whole different post.  No cousins, no aunts.  I only have one paternal uncle, and he never had children.  While in her office it hits me.  I have no female relatives, so the sample size is inadequate-I may have the gene which has been hidden because there were so few girls on one side of my family tree.   So I had the test on Tuesday.  Still waiting on results.

So Monday night Dr. K calls.  He has seen the MRI, although there is no report in the system (and a week later there is still no formal report-which is very annoying to me, as I need to see it).  The news is not good.  There is at least 50% involvement.  The lumpectomy is no longer an option.  The oncologist office will call me on Tuesday-I'll need to see him Wed or Thursday, but then we'll have a plan. 

Wednesday morning I go see the oncologist, Dr. M.  The staff at the Joliet office are very nice, but I won't be going there on a regular basis.  The doctor is nice too.  I go through the story of how I ended up in his office.  He too is amazed at how "lucky" I am.  I guess feeling lucky is a matter of perspective.  Kind of like saying you're lucky you got run over by a bus, since the train missed you.  He also does not have the MRI report, but his nurse is on it, calling the radiologist directly.  However he knows the results also.  There is lymph node involvement.  Wait-what did he just say?  Did he just say what I think he said?  We need to do Chemo.  Your hair will fall out.  Six treatments, 3 weeks apart, 4 week break, surgery.  I can breathe again.  I have a plan.  My world is back on its axis.  A plan.  I so desperately need this plan.  He needs more tests of course.  A PET scan, if my insurance approves it.  (Still have not had this so I'm guessing it was a no).  A full body CT, and a MUGA scan.  The MUGA is a heart scan.  One of the drugs can cause heart damage, but typically in much higher doses than I will receive.  These are scheduled for Friday.  I will need to have a port inserted in my chest to make the treatment easier, so back to Dr K, the surgeon, on Thursday.  I think to myself, good thing I'm a teacher and off for the summer so I can run to all these appointments.

While the doctor is talking I am watching his face.  He seems to be waiting for a reaction.  I keep telling him to go on.  I am an information sponge, I need more information.   I have gotten this feeling before, like I am not reacting the way I'm supposed too.  I am not overly emotional.  Have I cried?  Yes.  But only because the situation kept changing.  Now that I know, and I have a plan, it's all good.  Does it upset me?  Yes.  But this is something I have to get through to make it to the other side.  Do I ask why me?  No.  I am a person of faith.  God never gives you more than you can handle.  I don't know what his plan is, and I search for the reason, but I don't question it. 

So two weeks after sitting in Dr. K's office for the first time I am back.  I should have gotten a lumpectomy today.  But now I am waiting to get a port, so I can start chemo, before eventually having a mastectomy.  My Plan.  He explains what the port is and how he places it.  That his favorite surgery is removing it, because of what that signifies.  He is pleased that I've had the BRCAnalysis.  Surgery will be Wednesday, chemo on Thursday.  He also gives me a bit of good news.  Since the report is still not done on the MRI, they are assuming the lymph nodes are involved, but they do not know for sure.  They could have lit up on the MRI due to the biopsy the week prior.  Better safe than sorry.  I totally agree.  If there is any chance that these aggressive little buggers are floating around, I am not willing to gamble.  I suck at gambling. 

Thursday the kids were at the neighbors.  So I did research all afternoon, because that's what I do.  FDA information on the drugs I'll be getting.  I now know how these drugs work.  How they kill the cancer cells.  What all the side effects are and how frequent.  Reports from the medical journals on the protocol I'm following.  How long they have been using it (since 1999 in one form or another), how effective it is at treating this stage (10% more effective than the old protocol-98% overall).  R has been wanting a second opinion.  I am very confident after my day of research that this is the right course of action.  I am much more at ease.  I have the information I craved.  It's all good.
Friday, after the tests, I went to "chemo class".  The nurse is very kind.  I must say everyone I have dealt with at the various doctors and the hospital have all been very kind and caring.  Except the CT guy.  He was kinda creepy. Anyway, she said it was fastest class she ever had, only about 20 minutes.  I knew all about the drugs already.  She had a port demo kit, so now I know what they will look/feel like.  She went over what I could expect, what medications I would be taking and why.  steroids for 3 days after treatment, 2 anti-nausea drugs.  I told her I don't really like to take medications.   She stressed not to tough out the nausea-it won't go away on its own.  Once again I left with the idea that I'm not reacting the way I'm expected to. 

I spent the rest of the day with the kids getting their projects ready for the 4H fair.  Mostly cooking stuff.  The art was already done.  It was good to do something other than cancer related crap.  It was so good to focus on them, not on this thing that has dominated my life for a month.  I have 4 days before port placement, and nothing scheduled.  Time to relax and focus on my family. 

The hardest thing I have ever had to do, was tell my kids.  I didn't even do it.  R did it, and he did it well.  A already knew about the cancer, but this was harder, what is coming may be rough.  D and M was so much harder.  They don't really understand.  Poor D just cried.  He was very upset about me losing my hair.  Just like me.  M had no reaction.  He is my tough little man, keeps it all inside.  We went to DQ after dinner, and I came to the table and A is cuddling him, and he is sobbing.  It hit him.  I pulled him into my lap and told him everything would be fine.  I was going to be fine.  They are scared.  This is what upsets me.  I can handle being sick.  I can't handle my kids being hurt, or upset.  This kills me, it rips me apart.   It's my job to protect them, to take care of them.  The should never hurt or be sad because of me.  This is what gets to me.

Tuesday, July 17, 2012

So it begins....

July 11, 2012

That's the day my new life started.
I am 48 years old.
I am married to the love of my life.
My daughter is 14 years old.
My twin sons are 10 years old.
I have breast cancer.

There I wrote it.  I can say it now too.  This sucks.

So many thoughts run through my head.  As a scientist I want details, data, facts.  I have an overwhelming need to see the mammogram, see the biopsy slides, see the MRI, not just read the reports.  I am a very visual learner, I need to see things to understand them.  I need to see the cells that have been mutated and now grow uncontrolled in my body.  I am (was) a molecular biologist.  Now I teach high school science.  I want to know what made this happen.  This was not supposed to happen.  There is no cancer in my family.  I have spent my entire life knowing how i would die.  It would be my heart, in my family its always the heart.  Never cancer.  Not ever.  So where did this come from?  How did this happen?  What genes ran amok and caused this to happen? 

At least it's early.  I had a clean mammo in October 2011, for the past 8 years in fact.  The end of May I felt something odd.  Reminiscent of a plugged duct back from the nursing days.  Finally went to the doctor the beginning of June.  The mammo and ultrasound were ordered, but couldn't get scheduled til the end of June.  Something is amiss, we better take a better look.  Biopsy July 10.  Diagnosis July 11.  Saw the surgeon July 12.  Doc and Surgeon both said the same thing-its amazing I was there, that they found this so early, its microscopic.  There is no lump, just "prominent ducts".  Not something most people would even notice I guess.  Lumpectomy scheduled-its all good.

Then the phone rings later that night.  It's Dr. K-the surgeon.  After reviewing the mammo he has some concerns.  Needs a better idea of "involvement".  Wants an MRI before we proceed with the lumpectomy.  May need to be a bit more aggressive.  My heart beat quickens.  My blood pressure increases.  I can't breathe.  I can't see.  I hear my kids playing in the basement.  I can only focus on the sounds of their voices.  My world begins to crumble.  This is worse than they thought.  I had plans already in place....I really hate when my plans are changed-I mean really hate it.  It upsets me, even if its plans for dinner.  I am an obsessive planner, its the scientist in me I think. 

So now we wait for the MRI, it's in 2 days. 

I have only shared this information with a few select people.  The MayMoms of course.  We "met" online while we were pregnant in 1997-98.  While I don't post much, they are a huge source of support and consistency for me.  I told my neighbor, who went through this last year herself with a lumpectomy and radiation.  I told my oldest best friend, my sorority sister.  And another close friend, a nurse, whose help I may need.  I didn't have to tell my BFF, she's married to my doctor, so she knew before me.  I have not told my family.  I don't talk to them anymore.  Last thing I need is toxic people back in my life.  I also told a baseball mom-our sons are good friends too. 

Its the uncertainty I am having a hard time with right now.  I need to plan.  I cannot function without a plan.  I am not a "fly by the seat of my pants" kind of gal.  So I look forward to Friday.  We will have results-I can plan.  It will be better then. 

In the mean time I think about all the things I have put off, and how maybe I should get them done now.  Just in case there is no time later.  I think about that a lot.  What if....  My kids are so young, babies really.  They need me.  My husband is amazing, he's a phenomenal dad.  But he's not a mom.  They need me, all of them, my beloved husband included.  My mother died when I was 32, before my children were born.  They never knew the love of their grandmother.  She never saw the best part of me, the best part of my life, my children.  I want to know my grandchildren.  I want to spoil them, the way mine never were.  This is what I think about most.  I need to be here for my husband, my kids, my future grand kids, and I do mean way in the future :)