Thursday, August 23, 2012

Two down.....

Four to go.

1/3 of the way to the finish line.  So far so good.  Last two weeks I felt like my old chipper self.  Appetite came back, but red meat still is icky.  Doc was pleased with my counts.  PET scan was unremarkable.  That's good.  Don't even need to go back until next treatment in 3 weeks.  Need to track my blood pressure though, it was high again today, even though I didn't feel anxious or stressed. 

My hair is now officially history.  I combed it last Thursday and literally half of it came out.  I came downstairs, handed it to hubby and burst into tears.  Friday and Saturday more came out- a lot more.  I have very thick hair, or had.  Sunday the kids shaved it.  A did most of it.  She was surprised I didn't cry, she didn't know I already did.  I've been wearing my wig when I go out, not so much at home.  I wear it at work, but take it off on the drive home (about an hour) it gets a bit warm and my head sweats!!  I actually went out to talk to the Oberweis salesman and forgot to put my hair on!!  I didn't even realize it until I went in the house....that poor guy :)  I also think it's funny when the staff at school comment on my new haircut, they love it.  Only 3 people know so far at work.  When they ask about my summer I just say, "I've had better".  Not quite sure how to talk about it.  Don't know most of them very well.

It feels great to be back at school.  The kids helped put my room together on Monday.  Teachers meetings all week, students start tomorrow :)  Looking forward to seeing my AP chem kids.  I had them all for physics last year.  Excited for physics-4 full classes, lots of cool things planned.  Hope my energy holds up so i can get it all in.  My principal and dept head have been very supportive.  I love my job.  I've always been lucky to work for people I truly like, and to do things I truly enjoy.  I am blessed.

The kids all started on Tuesday.  I am now officially the mother of a high schooler.  YIKES.  She is having a blast, adjusting well, and generally loving it.  She is making a huge effort to stay organized and on top of things from the very beginning.  She knows if she wants to go to Notre Dame, her grades have to be excellent, not good or even very good.  She is very motivated, and has a goal in her sights.  Please keep your fingers crossed for a soccer scholarship-otherwise we have to pay, and that will not make for happy parents -_-    The brothers are in 5th grade, and have a tough teacher, but it's a tough transition year.  She will prepare them well for Jr. high, and they know what to expect, their big sister is showing them the ropes.  I love to listen to their conversations, always puts a smile on my face. 

Tuesday, August 14, 2012

Good news :)

BRCA results are in.....negative for mutations!!  Yeah my daughter is a bit safer now.  Such a a relief.  Does not rule the bilateral mastectomy though.  Will have to wait and evaluate the "suspicious" area on the left identified in the MRI after chemo. 

Been feeling really good, much like my old self these past few days :)  Been eating a fair amount-baked potatoes are yummy and Subway Tuna have made it into the rotation.  Had a nice chat with J&T Sunday morning.  You'll recall that T had chemo last year, so he is a great resource for me.  He called to check on me, see how I was doing.  We can share war stories now :)  I have been very touched by all the calls/emails/FB messages from my friends these past few weeks. 

The bad news is my hair has begun to come out :(  The kids will probably shave it over the weekend.  I have a 2 day meeting tomorrow and Thursday at school.  So if they shave it over the weekend I can start next week with my wig.  So my students (who start next Friday) will only see my new look.  That will be a bit weird.  I'm kinda more worried about my eyebrows......I have seen some human hair stick on ones-or can draw them in-but don;t want them to look weird. I will also lose my eyelashes.  A thinks I should get false ones...but I've never used them and am afraid I might put them on crooked-yikes how scary will I look with bad eyebrows and crooked eyelashes :)  Will have to look into options.

I did finally tell my nieces and nephews on FB.  I thought they should know for their sakes, and their children as well.  Heard back from one niece and one nephew.  Gotta love my family huh?

Friday, August 10, 2012

One week down

seventeen to go.

So I'm now into week two.  Chemo started last Thursday.  Neulasta shot was Friday.  Saturday took A shopping for school clothes in Joliet.  Missed a really bad storm at home.  R called me and actually told me to stay at the mall!!  It was pretty bad here, lots of trees down, friend P lost both her parkway trees, and our next door neighbor lost one as well.  We didn't lose anything, so we got lucky.  On the way home my arms started to hurt.  Most common side effect of Neulasta (which is used to boost WBC production and prevent infection) is bone pain. Check. Arm, leg and hip pain lasted til Monday, yeah me. 

I forgot to mention that before chemo I went to the shop associated with the oncologist that supplies wigs and accessories.   I brought the kids with so they could help pick out my new look.  They weren't interested in mommy looking "different".  D found a nice wig that looked alot like my hair.  So that's what we ordered.  It was delivered last week.  My hair is still intact, but at least I'll have it when I need it.  I have been assured that it will be gone before my next treatment in 2 weeks.  FYI, wigs are not covered by insurance.  Retail on this bad boy was $589.  Luckily the shop had a grant from Shorewood Family Dental that covered the cost for me.  Gotta send them a big thank you note.

Saw the onc on Thursday for a checkup.  He said I need to stop losing weight-I have never been told that before :)  Even with the shot my WBC count was low, so trying to avoid people and germs.  RBC were a bit low, so that explains the tiredness.  Most food tastes like crap.  Meat is the worst.  That is very disappointing to me.  I drink a lot of milk, and eat alot of Stella Dora Swiss Fudge cookies and cereal, mainly Rice Krispies or Capn Crunch :)  Anything with fat really upsets my system.  The digestive upset is the most obvious, and annoying, side effect.  The onc still did not have the MRI report, from July 19-20.  Had a PET scan Thursday afternoon, so still waiting on those results. 

Called the CEO of the hospital to complain about the MRI test results not being in.  His secretary got right on it.  Got no less than 4 calls from various people at the hospital indicating I would have results no later than Monday.  Turns out since the breast MRI is new to the hospital they were sending out all abnormals and it was taking longer than expected.  BFF called me at 7:30 to say she had the results and was faxing them to me.  She was surprised it got done so fast. 

So now comes the confusing part.  MRI does not indicate lymph node involvement.  But does show "suspicious" areas in the left breast.  Called back BFF to talk to doc.  "Do I need chemo if no node involvement?"  Yes.  "Why?"  If you were my wife I would make you go through it.  Whatever this is. it is very aggressive-it was not there 7 months ago, and now it's big and maybe in both sides.  I don't want you in 4 years if shows up somewhere else,  to tell me I wish we had...  I felt much better after we talked.  I know I'm in good hands.  He is still waiting on BRCA results.

So, we continue with the current plan, but I feel better knowing it was not detected in the lymph nodes, I feel like the chance of it spreading is now much much smaller-that was my biggest concern.  I will admit to feeling sorry for myself Monday-Tuesday this past week.  My tummy was upset, I was soooo tired.  I felt useless.  I am not a weak person, .but I felt weak and useless.  I don't do sick very well .  But feeling pretty close to normal most of the time the past couple of days.

I also have to say I am married to the most amazing man.  I don't really know how hard this is on him.  I know he has been talking to people he knows who have been giving him some good advice.  He knows me so well, he knows when to push me, and usually when to back off.  He will get me through this.  I don't think I could do it without him.  I don't tell him I love him enough.  You should all tell your spouses how much you love them and how much they mean to you.  You really don't realize it until something like this happens.  I think we tend to take the people we love for granted.  We should stop that. 

I am a bit worried about A.  She was very sad and upset when I didn't feel well the beginning of the week.  She cried and told me she didn't like seeing me sick.  That was hard.  My baby shouldn't have to worry about her mommy being sick.  She should only be worrying about starting high school.  She has been a big help around the house, but that's not her job either.  I have to take time to spend just with her, and reassure her that her mommy really is OK, even if I sometimes don't act like myself.  The good thing is that she is so close to her dad, and they talk about everything, and she is very honest with him about what she is feeling, so she won't be keeping her feelings in. 

The brothers had basketball camp at school this week.  I saw their 5th grade teacher and told her what was going on.  She was shocked.  I told her I won't be able to help at all first semester.  That was hard.  I've always been so involved in their classrooms, so missing so much will be difficult, but there's always second semester.  I will miss not being able to help and not being around, but maybe it's time to start stepping back anyway, they are in 5th grade after all. 

So that's all for now.  Chemo is in 2 weeks, and nothing scheduled before that.  I have a 2 day meeting at work next week, and we start the 21st, with students starting on Friday, the day after chemo.  I think getting back to work will be good for me too, less time to sit around and think.  Got to keep my mind occupied. 

It's all good.

Thursday, August 2, 2012

So it really begins

 One down, five to go. 

Had the power port put in yesterday.  Wheeled me in at 11:59, back in recovery and awake at 12:50.  No problem.  Never even took pain meds (but I did fill the script just in case).  It's all good.  Except the cleanser they use is orange and it didn't all come off when they cleaned it, so I look like I have a really bad spray tan on my neck/arms.  I can't shower til tomorrow. :)

Friend A stopped by last night to bring me a sweet gift and offer her support.  Friend P also came by to say she would drive me to chemo in the morning, and take A to her ortho appt for me, since hubby had a meeting he had to be at.  BFF also called to check on me. 

BFF also told me doc had to fight with the lab doing the BRCAmalysis.  They are on vacation this week but doc got a call and they said the forms didn't match, I put my sister was 49, he put 50 at diagnosis.  They couldn't run the test due to HIPAA.  BBF said doc was flipping, it's not like my age was wrong.  But he got it all straightened out.  So we wait some more.

So today went well.  Lisa the nurse removed the bandages and said it looked really good considering it was only put in yesterday, not much swelling.  Accessing the port wasn't any worse than a typical needle stick.  She drew the labs and I went to see the doctor.  He still seems a bit freaked that I don't have more questions, but it was all good.  The MUGA scan and CT were good.  Still no MRI report.  I expressed my concern at this.  He told me since they just started doing the breast MRIs at this hospital, the radiologist wants his results confirmed by another radiologist with more experience.  The question is who is going to pay for that, since I didn't request it, my insurance won't pay for it. 

The actual chemo was not bad, just long.  A 45 minute infusion of EMEND, anti-nausea medication, then 2 syringes of "red devil", followed by an hour of one medication and 40 minutes of a smaller bag. BORING.  I napped a bit and did a little planning for class.  Hubby came in to bring me lunch, made by my loving daughter.  The kids made red rice krispie treats and cut mine in a heart.  How sweet was that?  He left and came back with A.  She didn't really come for me.  She came to see Colin Egglesfield.  His parents live around the corner, and his dad was there for treatment.  I stopped over to say hi to his dad when I left, but he was napping.  Colin was very nice.  I told him I knew it was odd, but would he mind taking a picture with A?  He was happy to do it and they had a nice chat. 

Friend P also brought over dinner, so that was nice too.  She has been a godsend.  I don't know if I mentioned this before, but she also is a survivor, she had a lumpectomy and radiation last winter/spring.  I did call J&T when I got home to check in.  They are the closest thing I have to parents since mommy and daddy have been gone so long now.  T had cancer last winter, so he knows what I'm going through, and his input is greatly appreciated.  So now I'm kicking back watching the USA men's volleyball win a place in the quarterfinal, waiting to see Gabby win the all-around gold in gymnastics.  Hubby and A are at soccer, boys are at Friend P's house playing with the boys. 

While originally I wasn't going to take Neulasta, with school starting Dr. M thinks I should take it to keep the WBC counts up and prevent infection.  So I go tomorrow for that shot. 

I'm glad to get things underway, we are that much closer to getting this over with.  I am feeling good, but am aware the effects will come later, but for now I'll focus on the fact it was not as bad as I imagined, and now I know what to expect.  It's all good.

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 :)