Life is Fragile

I haven't posted in a while because these last few weeks have been awful.  My dear friend, Susie, whom I mentioned in my post about my second chemo session, has been living a nightmare.  I won't go into too many details, but in a nutshell, her husband, Matt, was admitted to the hospital on June 6, became unconscious, and never woke up.  He passed away on June 13.  Yesterday was the wake, and today the funeral.  They have two young girls.  I am devastated and can't believe this has happened.  I'm still stunned.  What's even more disturbing is that the doctors can't even give her a reason as to what happened or why he died.  Her life has been turned upside down in an instant, and she has lost the love of her life.  My heart aches for her, and I want so badly to help and to fix it, but I'm powerless.  All I can do is mourn with her. 

Two weeks ago, I also met my radiologist.  I will go into details about radiation in a different post in the future, but this visit was again, a reminder that I am not out of the woods.  He told me I was not a "slam dunk" case, and that there were things he was weighing before developing his plan.  This was 3 days after my oncologist told me he's antsy to get me on Tamoxifen so that I don't go into stage 4. 

These meetings coupled with Matt's death have especially put things in perspective for me.  Matt fought for his life and was taken in such a quick and freakish manner, where questions still swirl.  For me, I have confidence that I will beat this, but I'm fighting for my life in a totally different manner.  I also can't help but wonder if I'll have to fight again down the road, and not win.  It came back once already, who's to say it won't come back again.  The other day Julia had to go to the bathroom and she said, "Mommy, help me!"  I said, "Come on, you don't need me, you're a big girl.  You know how to go on your own." She said, "No!  I do need you!"  I said, "Ok, I hope you remember this!  When you're 16 and you tell me you don't need me, I'm going to remind you of this!"  And then I thought, "I hope I'm still around when you're 16." 

The last week I've felt healthy and my energy is back.  And the great thing is that I don't start radiation until July 5, so until then, it's like I'm back to normal (theoretically).  So I feel like I get a few weeks of health, and with this coupling of feeling like life is precious, I want to just do everything.  I don't want any moment wasted.  I'm to the point where I feel like sleep is a waste of time. 

However, this is contradictory to my goal for the year, both at work and personally, which is to practice rest, quiet, and self-care.  I've read Present over Perfect and it resonated so much with me.  I've been trying to be ok with quiet, and trying not to fill every moment with activity.  Summer has especially been welcomed, as I sit on the porch on the rocking chair.  Sometimes reading, sometimes talking with Eric, sometimes watching Julia play, sometimes just sitting.  It's been a welcome change to my constant hum of action.  Always trying to be productive.  Call me crazy, but I honestly believe that some of that contributed to my diagnosis. 

So now I feel like I've been having this tug of war with myself.  Getting as much packed in while I can, versus not spiraling back into becoming a do-aholic.  I haven't decided which route to go down, but unfortunately, I think old habits die hard.  Maybe I'll get lucky and strike a balance.  Until then, I'll keep praying for Susie and her family, and keep fighting my fight. 

Wake Up Call

Monday was an emotional day, both for the good and the bad. 

The Good: It was my last chemo treatment.  Hooray!!  I won't feel completely done with chemo until this weekend when I start to feel better, (currently I'm tired, nauseous, constipated, etc.) but it's nice to know that it's done and over.  I got to celebrate with my nurses and ring the bell that all last timers get to ring.  As I put my bag down to ring it, I could feel myself getting choked up.  I don't know why and didn't expect to get emotional, but it felt good to have my family and all those amazing nurses surround me, cheer, and clap as I rang that bell. 

The Bad: I'm so not done.  This journey will be longer than a triathlon.  It started with biopsies and ultrasounds, a lumpectomy, and chemo.  That's all done.  Now it's radiation and hormone therapy.  (Not to mention I had a double mastectomy 2 years ago). 

3 months ago my nurse navigator asked me if I wanted to meet with my radiologist.  I declined because I just wanted to focus on the task at hand each step of the way.  But as the end to chemo came near, I wondered about what was awaiting me around the corner. 

I've known I would have to start taking Tamoxifen, which is the hormone therapy pill I will have to take every day for 5 years.  My cancer is 95% estrogen receptor positive, basically meaning the effects of estrogen fuel my cancer.  This is actually a good thing because the Tamoxifen can take care of that pretty easily by blocking those effects.

Side effects of the pill though, include things like weight gain, hot flashes, irregular or no periods, mood swings, and depression. Let's take a look at that list again.  Irregular or no periods.  In order to get pregnant, a woman must be having periods. 

A History Lesson: Eric and I have wavered back and forth on having a second child since before I had cancer the first time.  We were about to start trying (Julia was 18 months at the time) and then I got diagnosed in March of 2015.  My mastectomy was in April, and my follow up surgery was in August.  After that I wanted to give my body a break, and I wanted a break from doctors.  Then spring of 2016 rolled around and we started talking about it again, then started trying, but it just didn't happen.  Then February 2017 is when I was recently diagnosed this second time around. 

The other medical note is that chemo would reduce my fertility by 30-40%, but I've been receiving injections every 3 weeks to protect my ovaries so that doesn't happen.  So I was kind of hopeful that maybe after all was said and done that we could try again.  But I left somewhat discouraged on Monday. 

Every chemo session I meet with my medical oncologist, Dr. U.  I had these questions swirling in my head about getting pregnant ready to go.  This is how the conversation basically went:

M: I wanted to ask you about the Tamoxifen and getting pregnant.  I was wondering if it was possible to hold off on the Tamoxifen and we try to get pregnant after radiation is done, and then start when all that is done.  Mainly because my daughter is already 3.5 and Eric is 42. 

Dr. U: Well, here's the thing.  From my perspective I'm actually really antsy to get you on the Tamoxifen.  In fact, I normally don't start patients on it until after radiation, but I'm going to start you 3 weeks in because I know that Tamoxifen will be good for you.  I mean at this point we hope chemo is working, but I have greater confidence in the Tamoxifen and that's why I want you on it. 

M: So what realistically is the earliest I could come off it and interrupt it?

Dr. U: Well, here's the thing.  You won't start getting periods again until earliest 6 months from now because of the chemo.  (Side note, I haven't had a period since March.)  So it doesn't make sense to delay the start of Tamoxifen.  You may also potentially get periods on the Tamoxifen, but we don't know until it happens.  If you don't, it will still take a few months once you're off the Tamoxifen for you to start getting periods.

M: And then who's to say I'll get pregnant right away.  That in itself could take a while.

Dr. U: Right.  The thing is, the Tamoxifen will prevent it from going somewhere else in your body.  Once it's somewhere else in your body, you're automatically stage 4 and incurable.  I want to keep you where you are and cure you.
.......................................................................

That was my wake up call.  I am so not done.  There's still risk.  I'm still vulnerable.  Nothing is a guarantee. 

And here I am trying to plan to get pregnant.  What good is having another baby if down the road I may not be around to care for him/her?  It's at that moment some of my dreams were dashed.  I always thought I would have two children, ideally two girls.  I know what it's like to have a sister, and I love it.  Deep down I've felt like our family has been incomplete.  I can't describe the feeling.  So to hear that it will either happen longer down the road, or most likely not at all, is heartbreaking. 

On Saturday, Eric, my grandma, and I were sitting in the backyard while Julia played in the water table, and she said, "I need a friend to play with." Eric said, "I'll play with you." Julia responded, "You're too big.  I need a little friend."



http://foreverymom.com/family-parenting/5-things-ive-learned-from-my-stillborn-son-audrey-scott/

I don't know that she'll ever get that little friend.  It's not to say I think only children are doomed or anything.  I have plenty of friends who are only children and they're pretty awesome.  I just think it's nice to have that possibility at least in front of you.  For Eric and I, we no longer have that luxury.  I wish I could just let it sit in God's hands.  But now I feel like we have to take control one way or the other: Interrupt Tamoxifen and try, at the risk of my own health?  Just go 5 years on Tamoxifen and we stay our family of 3 (4 including Chance)?  Adopt?  I don't know.  I just feel like at some point we have to make a decision, and I hate having to be so definitive. 

This whole journey has been a test in my trust in the Lord, and I feel like I've made progress.  Now I feel like I'm forced to take a few steps back because of this.  At this point though, today, there's nothing I can do.  All I can do is pray and reflect.  And I'll be doing some hard praying in the coming days and weeks to come, hoping for some direction, answers, and peace.  In the meantime though, I'm enjoying the blessing God has already bestowed upon us, which is our angel, Julia.  She is my joy and my light.  If we don't have another, at least I was given the gift to be called "Mommy" by this precious creature of ours.  I love her with my entire being, and am eternally grateful. 

Stares, and I Don't Care

Let's talk about appearances.  There's a few different looks I've been rocking lately:

1. The Scarf

Mother's Day brunch!

This is what I mainly wear at work.  I do it so that I'm covered up and don't freak people out (mainly clients).  Although it's massively itchy at the end of the day and I rip it off as soon as I get in the car.  I only know one way to wrap them, but I need to watch some YouTube videos and find some different ways of tying/wrapping them to change it up.

2. The Chemo Cap

It usually comes further down over my ears, but I had just woken up and was too busy loving on Chance to fix it.

I only have a few of these, but I like them.  Some look like they're wrapped, and have some loose frills in the back.  Yesterday I picked Julia up from school, and one of her classmates told me I looked like a pirate. I laughed for sure. My favorite, though, is my sleep cap.  It's so soft!!

3. The Wig

I received a wig for free through the American Cancer Society, and was so grateful because wigs start at around $800 at a low price point.  I've only worn it once, and that was for our family photos last week.  The reason I wore it was because I wanted to look back on those pictures and show generations to come from our family, and I didn't want to remember us as the "the time I had cancer." 

4. All Natural!!

On the train to the city.  I was sad because Julia didn't want to take a picture with me!

By far my favorite route to go!  Especially now that it's hot out.  I like just being me with no fuss.

Because I don't wear the wig, I often go out in public with either the scarf, chemo cap, or nothing at all.  I used to always do a scarf or chemo cap, and then take it off in the car.  Lately though, I've been moving towards wearing nothing at all the entire time.  It's just so much simpler.  I was talking to a co-worker about this preference, and she said, "Oh man, if it were me I would just hide away."

I think that's a very natural reaction to want to do.  I'm to a point though where, for the most part, I just don't care what others think.  I think of it this way: The people who I know, know what's going on.  The people I don't know, I'll likely never see again.

That's not to say that I don't feel the stares.  I definitely do, and the stares happen whether I have a scarf, chemo cap, or nothing at all.  Most stares are subtle and I don't really catch them until the end, and when I make eye contact with them, their eyes dart away, and they continue with their business.  Others do the same, but then I see look back after the eye contact.  Others are just really blatant in their staring, which makes me laugh.

http://pixgood.com/lots-of-people-staring-at-you.html

I was at a pool and received a tour so I could see if I wanted to take Julia there for swim lessons.  The tour guide was showing me the pool through the large, glass windows, and there was a mom sitting on the bench with her back towards us.  She turned her body to look behind and saw us, and then just kept staring at me.  It was so blatant and obvious since she had to turn her entire body to look.  I would look at her and then at the tour guide, and every time I looked back she was still looking at me.  Finally I just held her gaze and kept staring back at her.  She finally turned back around.

That has become my tactic now.  Whenever I feel heavy stares, I just stare back and they move along.  But honestly, I don't blame them.  I assume they are having a conversation in their head with themselves trying to figure me out: "Does she have cancer?  She's pretty young to have cancer, though.  Maybe she's just trying to be hip?  Do her clothes match that look, though?  She has a young daughter.  How does that fit?  Maybe it is cancer?"  We all do it.  We all see people that don't fit a mold, or that we have difficulty labeling, so our gaze lasts longer as we try to determine what that person must be like.  Then we quickly look away if they catch us.  I do it.  You do it.  We all do it.  It's our human nature (for some reason) to want to put people in a box.  I've just typically been a run-of-the-mill person that never required much questioning.  Now I'm not.

Because all of this happens every day, I've truly gotten to a point where I don't care too much, and that's why lately I've gone mostly with nothing at all.  My main decision on how to go these days is mainly based on weather.  Will I be hot or cold? Cold = chemo cap or scarf.  Hot = nothing.  That's not to say that I'm totally, one hundred percent secure.  I've definitely had certain times of uncertainty and with reservation.

Yesterday I volunteered to be part of a focus group for someone we know through Julia's school.  It was held in an office in downtown Naperville, and the participants were women with young children.  I had a chemo cap in my purse and thought that if I chickened out, I could throw that on.  When I arrived I left that chemo cap in my purse.  I went into a store to ask for directions (I was a little lost), then went to the focus group.  In my head I was always wondering how people might treat me differently, but it was great!  Nobody really looked at me funny, questioned me, or treated me any differently.

Here I am, world!

Afterward, I reflected on that positive experience, and it gave me even more confidence to just keep going, do what I want to do, and present myself without hiding.  It's been 4 months since I've been diagnosed, and I still have a ways to go.  Tomorrow is my last chemo session, which is great!  But then I have the next chapter, which is radiation.  I'm not nearly done yet.  So while the natural tendency may be to hide away, we have to remember why I'm doing all this in the first place.  It's to continue living.  So that's what I'm going to do, without reservation.

Love and Marriage

Today is mine and Eric's fifth wedding anniversary!!  We're a whole hand in marriage!  Wow.  What a ride it's been.  Some days I feel like we've known each other our whole lives, and others I feel like I'm still learning him. 

 

A few months ago I was talking to a co-worker who is engaged, and I asked how he was feeling about getting married.  He said he was pretty good and didn't really see how a wedding would change the relationship.  Over all the sense I got was that he didn't seem too worried about anything, and said, "I mean, I just don't see how it's going to make things different."  I responded, "Life just happens, and you don't know how you're both going to respond." 

Unsuspecting as to what's to come.

And it's true.  Cancer is my life and my reality right now.  Nobody could have predicted that I'd have to walk through this particular forest, and do it twice.  The other day I was getting ready and I asked Eric, "When we spoke our wedding vows and we said 'in sickness and in health,' did you think it'd be you taking care of me first?"  He said, "No way."  I think honestly we both didn't think that would happen.  I think simply because Eric is ten years older than I am, and I'm absolutely the more nurturing one, and I think we both just thought I would eventually take care of him.  But then God threw us this curve ball. 

What's strange is that back in January, I remember Eric and I having a conversation regarding how he handled my first go at cancer.  I told him that I was hurt at how he handled it because, in my eyes, he always acted like it was no big deal.  He never seemed worried to me, and I told him I was the most hurt when I told him that I got the call that it hadn't spread, and he said, "Oh that's good." He said it as if I told him it was going to be sunny and 73 degrees out the next day.  But he said he just never worried because he always knew that it was going to be ok, and that he wanted to be strong to me.  That everything he read it said to be strong for me.  I told him that's not what I needed.  What I needed was for someone to be scared with me and to walk alongside me during that time. 

So wasn't it funny, when just one month later I got diagnosed again.  Since we had this conversation recently, I told him explicitly what I needed from him.  I needed him to be open with me.  I needed him to share how he was feeling at the moment.  I told him I know his default is to go into strength mode in times of crisis (he was a Marine after all), but that I needed him to push beyond his comfort zone in order to help me.

I have to say, he hasn't been perfect, but he's definitely been better this time around, and I know it's been hard for him to stretch beyond that comfort zone.  He has told me how he's feeling, when he's scared and why, and has supported me in my decisions when navigating through all of this.  He has taken care of me during my tough days, taken time off to be there during treatments, and just held me when I needed it.  He has even gone to programs at the cancer center like a caregiver support group and to a group to find out what to do and what to say to best help.  Oh, and I can't forget the fact that he was the one who shaved my head!

Now, that's not to say this has all been rainbows and ice cream.  It hasn't.  We have had our yelling matches FOR SURE.  Times when I'm not feeling like my needs are being met, or times when we're both just tired and stressed.  I remember one battle when I wanted to talk about it, and he got upset and didn't want to talk about it because he said he thinks about it all day, people ask him about it all the time, and he just wanted a break.  Well, for me, I needed to confide in someone and process and needed him for that. Obviously our needs were different and just didn't align at that moment.  We were both burnt out and each antidote was the cause of the other's burn out.  Doesn't allow for much harmony. 

Marriage is hard.  It takes work.  As cheesy of a metaphor as this is, marriage is like a garden.  You absolutely have to tend to it every day, or your plants and flowers will begin to wilt or become overrun with weeds.  It has to be watered.  Weeds have to be pulled.  You have to take care of pests.  And all of this is done on the best of days!  Now imagine you have just riddled your garden with poison and you're trying to keep it all alive with that new variable thrown in.  Not easy. 

So, has our marriage been peachy keen?  Absolutely not.  Cancer is hard and it makes your relationships hard.  But I will say this: We are definitely stronger.  We are trying to learn each other during times of personal crisis.  How does one react and how do we help the other, while still trying to navigate the traitorous waters ourselves?  I also feel like in this short 5 years, we have been through a lot.  Becoming new parents, changes in jobs for each of us, and moving to a new house are some of the other changes we've been through amongst everything else.  We're choosing to become stronger over defeat, and in the meantime, I feel like our marriage is growing it's own little suit of armor.  We never wanted or asked for this path, but it's the path God has chosen for us, and we are doing our darndest to walk through it together successfully, in love. 

I can see the confidence coming through!  Nothing can scare us!