The Waiting Zone

After two weeks of constant phone calls, appointments, and preparations, we've entered The Waiting Zone.  I haven't spoken to any health care professionals for 2 days.  I must say, it's been nice to have been left alone. :)  I know my care coordinator will call me on Monday and start setting up more appointments.  I will be seeing a genetics counselor, a nutritionist, my exercise guy, and several doctors in the next couple of weeks.  Right now, everything just hinges on whatever the pathology report says.

And really and truly, whatever it says is OK with me.  I don't want to sound all holy, but the whole idea of this blog is that God is already there- he knows what the report says and how Dr. Buntinas is going to want to proceed.  I'm ok with that.  Do I want chemo?  No.  Do I want to grow closer to the Lord and be a better example of how He is faithful ALL the time?  Yes.  If going through chemo allows me to help one junior high girl in Bible class have more faith in her creator, then bring it on.

But meanwhile- we'll wait.  It has been a nice couple of quiet days with my sweet, wonderful, perfect husband.  I wouldn't trade that for anything.  :)

My cat guardian (funny/heart warming story #3)

When I got home yesterday afternoon, I went straight up to bed.  My cat, Magnolia, jumped in with me right away and nestled in on my left shoulder.  She stayed there for hours.  Every time someone came upstairs, she looked up to see who it was and then settled right back in.  It was like she was protecting me and making sure I was comfortable.  I just found it to be the most adorable thing.  I'm thankful for my kitty who is so comforting.  Can I compare my cat to God?? :)  Always there, watching over us, protecting us and taking care of us.  He doesn't always make sure we are comfortable, but He does make sure we are always comforted.  It is good to see Him in His creation and His creatures.

Feeling like a groupie (Funny story #2- slightly PG rated)

If you've had surgery, you know that they put a dot on the hand or foot of the side of your body they are operating on.  Well, for my surgery, they marked my right hand, but the radiologist who injected the radiation and did the ultrasound signed the actual location, as did the surgeon.  I felt like one of those groupies who beg rock starts for autographs in inappropriate places.  I just found it really funny.  And I hope it washes off soon. :)

The importance of knowing your math symbols. (funny story #1)

When I first met with Dr. Buntinas, my oncologist, I had to fill out lots of personal information.  One of the questions they asked was about alcohol consumption.  There is a link between drinking 3 or more drinks a day and breast cancer.  I had several options that didn't fit, so I wrote in that I drank less than one drink a day.  I used the mathematical symbol for less than.  When I was talking to the Dr., she asked me how much I drank.  I said, very little.  Occasionally we'll have wine with dinner or a beer.  She said she was concerned by my answer on the sheet because I said I drank MORE than 1 a day.  I had gotten the symbols backwards.  :)  OOPS!  So, when your kids ask you why it's important to know math- tell them it is so they can fill out their medical forms accurately and not freak out their doctors!! :)

Over the first hurdle

I've had 10 surgeries in my 37 years.  This is only one that has not been (mostly) elective.  The others were definitely necessary, but not in any way dealing with something life threatening.  They were more quality of life issues.  This one yesterday was a life saving operation, and it was by far the easiest one I have ever experienced.  I believe that is 100% because of my amazing friends and family (YOU!) who have been praying for me.  The procedures before the surgery were what I was most nervous about, and they all went without a hitch.  The first thing they did was inject 1/1000 microcurie of radiation that would travel to the sentinel node.  I was told that this was very painful for a few minutes.  It was, but I had a wonderful nurse who held my hand, and it wasn't nearly as bad as my imagination.  Then, I was really nervous about the IV.  Usually it takes 3-4 sticks before they find a cooperative vein.  My nurse, Lisa, got it on the first try.  Finally, anesthesia usually makes me very sick, but I felt perfectly fine and had no trouble at all.  THANK YOU so much for praying.  I had an amazing health care team who were compassionate, funny and amazing.  I was surrounded by friends and family.  One nurse came by and commented about my fan club in the waiting room. :)  I know at least one friend was fasting for me all day.  I am overwhelmed by the people God has put into my life to help me fight this battle.  I am full of gratitude to Him and to you all for being used by Him.

I won't know anything about chemo until Tuesday or Wednesday.  They forgot to send the node for testing during surgery.  I'm actually very ok with that.  This way I'll find everything out at one time and won't have to only have partial information.

I have a few funny stories to tell, but I'll put them in separate posts.

The end of one normal and the start of another

When I woke up this morning, I realized that this is the last day of the normal I am familiar with.  That's a little scary and a little sad.  I like my normal and wouldn't choose to change it.  People say this is a great time to reevaluate how we live and to start being intentional about life.  Darrin and I have worked really hard in our marriage to make our lives intentional already.  I don't have any regrets or things I wish I'd been doing.  I guess that's a good thing! We already make lists of things we want to accomplish, people we want to see, places we want to go, and we work hard to make all those things happen each year. We'll just keep doing that, I guess, and be glad that we haven't put things off and missed out on things because we weren't intentional.

 I am pretty excited about my own fitness and nutrition people.  It makes me feel a bit like a rich movie star!  I guess I'm moving into being a survivor, not just a live-er. (wanted to make sure you didn't think I meant a liver- yuck!) ;)  Survivor sounds nice- it's strong and brave.  I feel like I should be running around in camo with big weapons and saving everyone from the bad guys. :)  "She's a survivor, man!!"  :)

So- how are we spending my last day of this normal?  Redecorating the Lego Lounge in the basement as a surprise for the boys when they come home, getting compost from the dump (SMELLY!!) to finish planting our flowers, and hopefully dinner out somewhere nice. We usually only go to places where we have gift cards or coupons, but it seems like maybe tonight we can go where ever we want.  I think it's a special enough occasion!! Now we just have to decide where. . .

On another note- thank you all so much for your kind words on Facebook and in email messages.  It is very humbling to know you are all praying and reading this blog.  When I was praying this morning, I realized that I"m pretty excited about being able to encourage other people in their struggles as I go through mine.  Not everyone is facing cancer, but everyone is facing something.  Our Lord is already there.  It is an honor to be able to face this with Him, and with you all.  Go Team Robin!

Timing

I've been thinking a lot today about how God is so in control of this whole situation.  For example, the last two summers we have taken big, two week vacations.  One to Colorado and one to the east coast.  After last summer, we talked and decided that we didn't want to do another really big trip this summer- we just wanted to do some smaller camping trips and be at home more.  If we had planned a big trip, we most likely would have had to cancel it.

We did plan a smaller trip with my parents to Branson for Andy to check out a college.  To fit my dad's teaching schedule, we are going at the very end of July/first of August.  If I only have to do radiation, that should be my last week and we'll only have to change the trip by one day.

Getting this diagnosis right at the end of the school year means we can deal with it over the summer, so hopefully the fall won't be disrupted for my teaching schedule.

Back in March, we scheduled for the boys to be away for a few days right now, so we don't have to worry about them on Thursday and this weekend.

It never ceases to amaze me how God has worked in advance to handle things before we even know they need to be handled. I can't really even put it into words.  Just knowing that He has it all arranged and all figured out is so very comforting.  It's also very humbling.  The God of all creation, the God of the whole universe, is so interested in me that He made sure I wouldn't have to cancel a vacation and face that disappointment on top of everything else.  That's pretty amazing.

Telling everyone

There were of course several people I needed to tell personally about this diagnosis.  Those were really exhausting conversations, but also so encouraging.  The Lord has given me such an incredible support system.  If you are reading this blog, you are part of it, so thank you!!  This morning I sent the email to the Cedar Valley email group, and I'll be posting it on Facebook shortly.  I've been delaying these announcements for several reasons.  First, I didn't want to be Debby Downer at the end of the school year when everyone is celebrating graduations and the beginning of summer.  Second, when it actually came time to share, I found I really didn't want to.  Everyone knowing makes it actually real.  Before people knew, I could just be me without worrying about people being sad or upset or awkward in my presence.  Remember, I'm still me!  I don't want cancer to be the topic of every conversation.  It is now integrated into who I am, but it doesn't define me.  My interests, my slightly off sense of humor, my personality are all the same.  Please don't feel awkward or uncomfortable talking to me or my family.  We need as much normalcy as possible!!  We really appreciate all of you- all your care and concern and help.  We are so very blessed by all our friends.  Go Team Robin!!

Already There - Casting Crowns

Telling the boys

We told the boys last night about my diagnosis.  They handled it pretty well.  When I was finished, I asked if they had any questions.  Luke promptly asked if he could have toast, and Shiloh wanted to know if he had been good enough to earn back his Lego gift card. :)  Andy just told me he loved me.  We joked about it some throughout the evening.  I know it will be a tough summer for them, but my social worker suggested some great alternatives.  For example, instead of doing all the camping we want to do, we can cook outside over our firepit in the back yard.  I just want to be sure I can still be mom and we can still do the fun things we want to do.

We're also entering Shiloh's senior year.  We have so much to do with him- getting guardianship for when he turns 18, setting up a trust for him so he never has too much money and loses his benefits, figuring out what programs to do after graduation, getting him on a waiting list for a group home setting, continuing to work on life skills and job skills.  It is a little (OK, actually a LOT) overwhelming.  But I'm confident God will give us the strength and time to get it all done.  I don't see how right now, but that's where faith comes in.  :)

Diagnosis

I'm feeling a little overloaded.  I've met with 4 different people in two days and have been told so much information so many times.   I suppose it's good to have it repeated so much- what do they say?  You don't really learn something until you've heard it at least three times??  At least, that's what I tell my students.  That way they don't know if I'm just forgetful or purposefully reiterating something! :) Anyway- here is what I've learned over the last couple of days.

First- I have an invasive mammary carcinoma that favors ductal.  This means it is located kind of between the lobules and the ducts.  Invasive just means that it has moved out of the ducts and into surrounding breast tissue.  It does not mean it has metastasized.  It is estrogen and progesterone positive, which is a good thing.  That means that at the end of all other treatments, I will take tamoxifen for 10 years.  It is HER2/neu negative, which is also good.  That means it is more treatable.  So- three good things.  There are, of course, a couple of weird things, too.  I can't do anything straightfoward. :)  There are a couple numbers I don't fully understand that are wonky. One of them is indicating that it is a relatively aggressive cancer.   These numbers come into play a little later.

Treatment:  I will be having a lumpectomy next Thursday, May 29th. I  have to be at the Surgery Center at 6am. :) They will start with a sentinel node test, which will allow my surgeon, Dr. Nowell, to locate the sentinel (or first) lymph node. They will inject a dye that need a couple of hours to move through the tissue. She will first remove this node and send it straight to pathology for testing.  If there is cancer in the node, I will definitely have to have chemotherapy.  If there is no cancer in the node, I might have to have chemo.  After the node test, she will remove the lump and stitch me back up. The whole process from sentinel test through surgery will probably be 6-7 hours.  I'll get to go home that day.  I'll be sore for a few days, but I should be up and around pretty quickly.  But I won't be able to lift heavy things or vacuum for a week or so.  Darn it all! :)

After the surgery, pathology will really look hard at the tumor to see if they can figure out the weird stuff. If they decide it's weird enough, I will probably have to do chemotherapy, even if the nodes are not involved.  If they decide it's ok, I'll wait 3-4 weeks and then start radiation therapy.  Radiation will be 5 days a week for 6 weeks.  Radiation will definitely happen.  If chemo happens, they will do that first, and then radiation after that.  So, treatment is still up in the air until after surgery.

Today at my appointments, I was given my own purple bag and tons of resources, including a cute pair of socks. :)  There have to be a couple perks of cancer, I guess.  I also have access to my very own exercise guru and a dietitian.  I can take pilates with cardio, zumba, yoga, or tai chi classes for free.  All of these services continue for many years.  I have a social worker, a coordinator, several doctors and all the diet and exercise people on my team.  They do an excellent job of anticipating needs and working to meet them.

Tonight we will tell the boys everything.  I wanted to wait to get all the information before we scared them with the 'C' word.

The next step is just to be rested and ready for surgery next Thursday.  Go, Team Robin!

The Beginning of the Story

I'm new to this whole blogging thing, but I thought it would be a good way to keep everyone informed as I take this journey through breast cancer.  I want everyone to know the story, but I find it exhausting to repeat myself a lot.  This way you can read all the details you want, or just skim through and get the gist of things. First, I want to thank you for stopping by and being part of my story.  Just a warning, we're talking about breast cancer here, so parts of the blog you might find embarrassing.  :) Here's how it started.

On Mother's Day weekend, I got really sick.  The awful, gut wrenching miserable kind of sick.  I went to bed Friday night and didn't get up again until Monday.  In the midst of it, I found a lump in my right breast.  I was just watching TV with Darrin and happened to feel it.  I didn't say anything that night, but on Sunday I mentioned it to Darrin and we decided I would call my gynecologist first thing Monday.  I had been in for my yearly exam in March and that part of the exam was fine.  I had an abnormal pap, though, so I had just gone through a couple unpleasant tests just to be told that everything was perfectly fine.  I assumed that this would be fine, too, but I knew it was smart to get it checked out.

I called Monday morning, May 12th, and they got me in that afternoon.  After confirming that there was indeed a palpable lump, I headed over the mammogram room.  I'm only 37, so the very unpleasant squishing was a totally new experience.  After the mammogram, they scheduled me for an ultrasound 2 days later.  The mammogram can tell that there is a lump, and the ultrasound can identify if it is liquid (good), fat (good), or solid (not so good).  There is a waiting period between the mammogram and the ultrasound so the Dr. can read the mammogram and know what he is looking for.

On Thursday, May 15th, I went in to RCI for the ultrasound at 10 am.  Unfortunately, the mass was solid (not so good).  The radiologist came in and told me we had to do a biopsy, but first he wanted to check out the left side.  So they did a full ultrasound on the left side and a mammogram.  There were a couple of suspicious spots, but the doctor decided they were ok.  Then they had me come back at 2:30 for the biopsy.  They started with another ultrasound, and then did the biopsy with a local numbing agent.  It was still quite unpleasant.  They didn't warn me that the instrument makes a loud noise when it clips the tissue, so I yelped when he took the first one.  They were worried that they had hurt me, but I told them they just scared me out of my wits!  One doesn't expect a noise like a gun to come from inside your breast. :)  The tech was great and really tried to help me relax.  We discussed grocery shopping, meal planning and living on a budget. :)  Aldi should really pay me a commission!

Anyway, after the biopsy, I had a clip inserted to the spot where they took tissue so it could be identified by a surgeon if that became necessary.  Then I had another mammogram to mark where the clip is located.  That mammogram didn't hurt since they had used quite a bit of lidocaine for the biopsy. :)

They told me I would hear probably on Monday or Tuesday.  I went home quite sore.  By this time, I was starting to think this might not be just another medical anomaly that no one could explain.  That happens a lot with me.  You see, I was diagnosed with Ulcerative Colitis when I was 18.  It's an autoimmune disease involving other embarrassing parts of the body.  With it came arthritis, skin problems, fatigue, and weight gain due to medication.  I've also dealt with surgery to correct congenital hearing loss,  three knee surgeries (all on the right), three foot surgeries(two left, one right), and eye surgery when I was 5.  My mom did everything right when I was a baby, but I seem to have drawn the short end of the healthy stick. So by now, I was very used to lots of tests and not many answers.  I was prepared to have gone through more unpleasant tests just to be told that everything seemed ok and they didn't know what exactly was going on.

I shared with a few good friends that I had had the biopsy and we laughed a little about all the squishing.  My parents handled it remarkably well, at least in my presence, but I know my mom was really worried.  They picked the boys up from school on the day of the biopsy.  When we got home, she was sitting in the most uncomfortable chair in the house, rigid as could be.  They've been great, and I hate worrying them.

On Monday, I kept the phone in my pocket or on my desk all day.  It finally rang about 3:15- in the middle of my 7th hour class.  The kids were watching a movie, so I stepped into the hallway.  The doctor asked if I was in a place I could talk, which I figured was a bad sign.  He was so kind and gentle.  He said, "Well, we did find a little cancer."  Three small, life altering words-"A little cancer."  The rest of the afternoon is a bit of a blur.  Calling Darrin to come to school right away, finding Sarah Lillis on the playground with her kids, telling my boss, Jeff Pospisil.  Going over to my parents' to tell them in person, calling my brother, calling Maya Murphy, emailing Amy and Dennis in Turkey and Katie in Vancouver.  The funniest- listening to our son, Luke complain about how much his knees hurt, trying to be sympathetic while all the time thinking, 'Suck it up- I've got cancer!' Isn't that terrible?!?  We've chosen to not tell the boys until after I meet with the surgeon and oncologist.  We want to tell them what the plan is to try to minimize their worry and stress.

I talked with a nurse at RCI who said she was sending all my information to the Breast Care Coordinator at St. Luke's.  She would call me on Tuesday and start getting appointments set up.  Until then, nothing to do but wait.

On Tuesday morning, I told the rest of the staff.  I cried a little in our staff meeting, which I am sure put all the guys in a panic.  Not only is she saying she has breast cancer, but she's crying, too!!! :)  Poor guys. I got a call that morning from Wendy, the breast care coordinator.  She started setting up appointments, and was also able to give me some more information.  I'll post that separately so people can skip to that and avoid this long history if they want.  Now it is Wednesday, and I am heading to see the surgeon this afternoon.  I see the oncologist and Wendy tomorrow morning.

The thing that has been most reassuring to me is that none of this is a surprise to God.  He knew exactly what was going happen, and what will happen.  The Casting Crowns song I posted first is just so true. He's all over this.  He already knows the end of the story.  I won't pretend I don't have moments of panic, but I am confident in His care.  I'm actually a little excited to see how He's going to use this to bring glory to Himself.  And I am humbled to be a part of that.

So now it is time to Fight Like A Girl!!  Go, Team Robin!!

Already There by Casting Crowns

The title of this blog comes from a song by Casting Crowns, one my favorite bands.  I was told about this song by our music teacher at Cedar Valley Christian School, Samantha Ulmer.  These lyrics are by Casting Crowns, they are not mine, and no copyright infringement is intended.  This song is on their newest album, Come to the Well. 

From where I'm standing
Lord it's so hard for me to see
Where this is going
And where You're leading me
I wish I knew how
All my fears and all my questions
Are gonna play out
In a world I can't control

Oh, oh

When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there

Oh, oh, oh, oh

From where You're standing
Lord, You see a grand design
That You imagined
When You breathed me into life
And all the chaos
Comes together in Your hands
Like a masterpiece
Of Your picture perfect plan
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there

One day I'll stand before You
And look back on the life I've lived
I can't wait to enjoy the view
And see how all the pieces fit [x2]

One day I'll stand before You
And look back on the life I've lived
Cause You're already there
You're already there
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there