Chemo It Is

Well, what I thought from the very beginning has been confirmed.  I'll be doing chemotherapy.  It's so crazy how all this works.  You spend so long waiting, and then you hear the news and then it's go time again. 

So basically this oncotype test evaluates the genes in your tumor and essentially exposes the "personality" of your cancer.  You receive a score that tells you where you fall on the spectrum of the likelihood of a recurrence and the benefit of chemo.  If you score 18 and under, your chance of recurrence is low and the benefits of chemo are low, so you wouldn't do it.  If you score over 30, the chance of recurrence is high and chemo would reduce that risk by 40%, so it's best to do it.  If you score in the middle, that's where it gets tricky.  In studies, there weren't many women that landed in the middle range, so there wasn't enough statistical data one way or the other to determine if it was beneficial or not.  That's where I scored.  I scored a 28. 

 

So chemo it is.  I'm young, this is the second time around, and he said it was a grade 3, which meant under the microscope my "cells were angry."  However, the chemo I'll be receiving is tolerable.  It's a combination of Taxotere and Cytoxan, or TC.  Dr. U said that there's really a multitude of side effects that could happen, all of which I can't even remember right now.  It's also tough because who knows if I'll experience all of them.  He did prescribe me 3 anti-nausea medications that I'm to take prior to my first session.

The other piece I have to do ahead of time is an injection one week ahead of time to essentially "turn off" my ovaries.  This chemo has a 20-30% chance to cause infertility, but I can receive an injection once a month to preserve my ovaries and prevent infertility from happening.  I also need to schedule a time to go to the wig boutique to choose a wig. 

I'll admit, there were a few tense moments.  He explained that there's a 0.2% chance of getting leukemia 8-10 years down the road from the chemo.  He said normally any side effect with that percentage he wouldn't even mention, but that he should.  Then my dad was visibly irritated, and said, well last time they said it was a 2% chance this would come back and here we are.  Dr. U explained that anything we do is all about eliminating risk.  That wearing a seatbelt doesn't mean you won't ever die in a car accident, but it reduces the risk. 

So then we had to plan the calendar. The main side effect is extreme fatigue 2-3 days after the treatment.  So I had to choose if I wanted to be tired during the week or during the weekend.  Initially I thought I would do it during the weekend so I didn't miss a lot of work.  But then as I sat there thinking of it, if I did that, the 2 main days I get with Julia would be diminished.  I also figured, if I'm tired on Thursday or Friday, Julia would be at school and away from it all most of the day, and there's always a chance I could work from home. 

He asked if I had any time I wanted to be good for, and I told him the week before Memorial Day weekend since my mom's whole family will be in town.  So we worked around that, and took into account that I'd do treatments on Tuesdays so I was good for the weekend.  So that landed us at April 4.  I will do four treatments 3 weeks apart. 

After that, I was off to pick up Julia.  We stopped at Meijer to drop off my prescriptions and pick up some bread for dinner.  As we drove home, she asked me about my health.  Our conversation went something like this:

J: Mommy, do you still have your ouchie?
M: Yeah
J: Are you still sick?
M: Yes
J: Oh, yeah.
M: Mommy has to go to the doctors to get more medicine.  It's going to make me lose all my hair ok?
J: Oh, your ouchie is going to make you lose your hair?
M: No, the medicine I have to take will make me lose my hair.  But the medicine will get rid of my ouchie.
J: Ooooh, but it will come back.
M: Yes, you're right, my hair will grow back.  So it will be very short, but it will get longer.
J: Yeah

I wasn't planning on telling her then, or this early, but I felt like she asked and it was a natural opening.  I also feel like the more I talk to her about it in a matter-of-fact way, maybe the better she will accept it.  I was talking to one of my best friends on the phone yesterday and told her I was most likely going to need chemo (at the time it wasn't confirmed yet) and she said, "How do you talk about this so calmly?" And I said, "Because this is just my life now.  You just do it and deal with it."  I feel like that's how Julia's dealing with it, too. 

I'm sure in the next few days I'll process some more, but for today I'm grateful I have a plan.  The waiting is over.  I have answers and a timeline.  For me, that means a lot. 

Waiting

It's interesting how things you normally see all the time suddenly seem different or register differently.  The other night Julia and I were reading Oh the Places You'll Go by Dr. Seuss.  The book is typically for kids or high school graduates.  But as I was halfway through, I thought of myself as the character going through my cancer journey.  These are the pages that rang true to me.

 

 

Tomorrow I go see my oncologist.  I got my oncotype score, so we'll be talking about what it means.  I'm not ready to share it yet because I don't know 100% what the course of treatment will be with the answer.  I mean, I'm pretty sure, (like 90% sure) but I'd rather wait until I know for sure what's happening. 

 

Right now I'm living in the first picture.  The one about waiting.  I've always said the waiting is the worst part.  The what if's, the unknown.  I like knowing where my foot is going to land.  Tomorrow though, we'll know.

 



 

No More Bowls

This is going to be a fast one, and not very eloquent.  I'm crying because all of the bowls are in the dishwasher and I wanted a bowl of cereal.  Not a good place to be in. 

That's what caused my breaking point.  I'm mad, tired, stressed, crabby, short, annoyed.  I think the reason why is because I've tried so hard to overcompensate.  I do this to myself.  I hate being knocked down.  I hate being weak.  I hate having limitations put on me.  I stopped my meds on Sunday, 2 days after surgery.  I wanted to prove I didn't need them.  I went back to work on Tuesday.  People said I was either crazy or amazing.  I took pride in either.  I want to go twice as hard.  Imagine a race track, and you're running mid-stride, and you trip on a shoe lace.  You take care of business, and then you take off.  Annoyed, frustrated, and running harder in order to catch up.  That's me.  Running harder, trying to catch up.  Catch up to what, I don't know.  Normal life?

I think I'm mad today because I realized that running harder didn't help or make things go faster.  I saw Dr. G today and she asked me to lift my arm out to the side.  She asked if it hurt, I said it felt tight.  She said it should because she took a good amount of muscle out, and would be like that for a while.  She also said I had fluid in there, and hopefully it will go down and the body will absorb it on its own, but if it doesn't Dr. P will have to drain it with a needle. 

I was supposed to see Dr. P next, but he's at a wedding in Texas.  I suppose he's entitled to his own life, right?  I saw his PA and was not impressed with her.  At all.  She took off the steri-strips.  It hurt.  I looked down.  For the first time saw the incision.  It was bigger than what I had imagined.  She seemed pleased with how it was healing.  I wasn't.  She put new steri-strips on.  I'm still tender and red. 

The rest of the day was good.  I should have been happy.  But I wasn't.  I'm finally angry.  I hate having to take time out of my day to go to the hospital every week.  I'm there so often the receptionists and nurses know me when I walk in.  My life is already so hectic as it is.  Work, the house, Julia, cooking, family, friends, time for myself.  Now I have to fit this on the plate.  (Now I'm angry at myself because I sound like such an elitist, first-world, white, brat.)

I was mean.  I was short.  I yelled at Eric.  I yelled at Julia.  For little things.  Stupid things.  But I didn't know how to convey or communicate the volcano erupting inside of me.  I went upstairs and laid in bed watching the Great British Baking Show for an hour alone.  I needed to cool down so as not to cause any more damage. 

It worked a bit.  I put Julia to bed.  As I did, I told her I was sorry for being crabby and mean.  She, of course, forgave me.  We had fun doing potty, pjs, story, and prayers.  I love her. 

Then I went back to bed and felt anxious, headachey, and tired.  I took some Motrin.  That's when I thought a snack would help.  I thought cereal would be good.  That's when I discovered all of the bowls were in the dishwasher.  And that's why I am sitting here, puffy faced, eyes red, face wet. 

Genetic Test Results, More Waiting, and My Angel

Well, more good news!  I got a call from the genetics counselor and it turns out all my genetic testing came back normal!  So I don't have the Li Fraumeni Syndrome, which is a disorder that means I would have been susceptible to other various types of soft tissue cancers.  What a relief!  It feels good to just focus on this cancer battle now, instead of worrying about everything else.  The only minor negative thing that the genetic counselor mentioned was that with my tests coming back normal, it doesn't explain why I got breast cancer at such an early age.  It'd be nice to know the "why" behind it so as to prevent it from happening again, but maybe things don't always have a clear answer.  She did tell me that I should call every 2 years or so to keep up on new studies and findings.  This also means that radiation is now definitely a part of the treatment plan, because if I had Li Fraumeni Syndrome, I may not have had it.  So more pieces of the puzzle are coming together.

 

 

Yesterday was also so very nice.  My neighbor across the street was diagnosed literally a few days after I was.  She has a daughter in 5th grade that Julia ADORES.  It's a big old love fest with those two, which is great because since they are both only children.  I feel like they've adopted each other as siblings.  My neighbor had her lumpectomy on Tuesday, so Wednesday Julia and I brought dinner over, and the girls played upstairs while she and I talked.  We text nearly every day checking in with each other, but it was nice to just sit on the couch and talk in person.  We lifted our shirts and showed each other our wounds, talked about tests, treatment plans, our significant others and family members, and of course, our girls.  It was just lovely.  I would never wish this beast of a journey upon her, but I'm glad we have each other.  Please be praying for her and her daughter as well.

Finally, I got a call from Dr. G and she said that we'll have to wait about 2 weeks on the Oncotype test, which will tell us if I would benefit from chemotherapy or not.  So now I just wait, which of course is the hardest part, right?  I think for this one, this is hard for me because I love my plans.  I know that with chemo, there's a possibility that you can't be in public very much in order to lower your chances of getting sick from something else since your immune system is shot.  That bums me out.  My cousins are coming to visit from Arizona in May and we're trying to go to a Cubs game.  But now we're waiting to buy tickets in case I can't go.  I hate that we're waiting on the total number because of me.  I feel like the exciting parts of spring and summer are potentially being put on pause as I await these results. 



I WILL get there this year!

In Julia news, I am again, so grateful for her teachers.  I love that they continue to send me pictures and updates on how she's doing.  This morning was a rough go.  I think she's still adjusting to the time change, so she was not excited about getting up, and wanted to sleep more.  (I feel you, girl.)  I texted her teachers just to give them a heads up.  Today when I picked her up, her teachers said she was a little more clingy than usual (but that they were happy to give her hugs) and that she talked about me a lot. They said they were glad she's talking about it, and she's very matter-of-fact about it.

Later I asked what she said, and apparently she said that she loved me so much but that she was worried she was going to hurt my ouchie, so she was being "oh so gentle."  Another time she said, "My mom is sick you know, but she's going to be ok."  Cue tears. 

That makes my heart so deeply sad, but so deeply happy all at the same time.  I hate that at the tender age of three she is having to face this, and deal with the uncertainty of everything in a time that routine and stability is key.  I also hate that she has feelings of concern for the person that should be taking care of her, and she shouldn't wonder about whether that can be one hundred percent or not.

At the same time though, I am so unbelievably proud of her.  The fact that this girl is able to articulate her concerns and feelings about such a dynamic subject is amazing to me.  Her sense of empathy, courage, and strength leaves me in awe, and I can't help but think that if this is what she's like at the age of 3, I can't even imagine what kind of amazing woman she will turn out to be.  She is absolutely the purpose for my life.  God blessed me with this remarkably perfect angel, and I am forever grateful for her.  Thank you, Jesus.