my new normal

I haven’t posted pictures of myself lately, because well, I haven’t felt like myself.  Besides dealing with the unfortunate side effects of treatments, my hair has thinned out significantly, I don’t wear a stitch of makeup, and I’m generally in PJs or some form of lounge wear (covered in spit up) all day.  When Sophia is home, I try to give her the attention she needs, but she is high energy these days -- and on the bad days, I can’t hide how going up and down the stairs feels like a feat.

But bedtime I like, because after we finish books, Sophia always pleads, "Lay with me," and on the nights that I do, we talk.  I usually ask about her day with Poppy, and she tells me about what she learned and did and ate.  Sometimes she'll bring up memories from one of the many trips we've taken in the past, and other times she'll voice her current fears and worries.

I wasn't expecting the conversation she sprung on me tonight.

"Mommy, I love you just the way you are."

"Thanks baby."

"I don't want you to die.  Are you going to die?"

"Well... I will die someday.  But I hope to live for a long time to be with you."

"Yes, because you need to take care of me."

I don't know why, but hearing those words from her hit me harder than when my oncologist basically told me the same thing at my first visit; that I had a find a way to focus on myself and my health now to be there for my kids in the future.  Maybe it's because at not quite 5 years old, I realize that my daughter has very real fears of me dying -- that perhaps seeing me struggle physically has affected her in ways that I have not been able to shield her from.

Still, I hope that she sees the other side of me, too.  The side that is trying my best to hold it together to keep some semblance of the routine she's used to; the side that pushes through with a resolve and a strength I didn't know I possessed.  If there's one thing that being diagnosed with cancer shows you, it's a reminder that we have one life to live and not to take it for granted, ever.

I know that with time she will probably notice these things, and if not now, then when she is older.  And yes, I hope that I will eventually feel like myself again.  Well, not exactly.  What I do hope is that I will feel like a better me soon.

a different kind of mother's day

Dear Sophia and Eli,

Mother's Day 2020

This Mother's Day is like no other.  Not only because we are in the midst of a pandemic, but because I have been fighting physically -- in a good way -- to ensure I can be there for you in the future.  It has, quite literally, been the fight of my life, and some days I am wracked with guilt that I can't be the mommy to you that I want to be.  There are days that my body is aching pretty much everywhere, and my fingers are so numb that I'm struggling to wash bottles and braid hair, and my knees feel like they are going to buckle -- and on those days I'm terrified of holding you, Eli, and can see the understanding dawn in your eyes, Soph, when I'm drained of energy and can't play with you on the floor (because I can't make it comfortably on to the floor, and if I do, there's no chance of me getting back up).  It hurts, and not just physically.  I so wish things could be different, and that there weren't days that either of you would see and feel me crying, or pulling back and being sensitive about how much hair I've lost, but I tell myself to keep moving because of you.

Sophia, this is our fifth Mother's Day together, and since the day you made me a mom you've kept me on my toes -- driven me, challenged me, given me a lesson or three.  You've taught me about compassion and kindness and grace.  You've grown into a loving, bright, and beautiful little lady and made me so proud of how you take care of our family and share and use "big" words and hold your own in a room full of boys.  I love how you still call me "momma," and climb into bed with me at 3 AM and reach for my hand, that you ask me to lay with you to chat about the day, and how you run back to me with open arms in the mornings for a "huggie."  I love that you always think of Lily and Lucas, and pick flowers for their graves and for me, too, every day.  I love that you comfort me when I'm down and tell me things are going to be okay, that you ask which side of my body hurts so you'll avoid it, that you are incredibly patient and understanding when I'm slower than normal.  Thank you for giving me a pass when I need it and showing me love.  Don't ever change, sweetheart.

Eli, on this first Mother's Day with you we've already been through so much, haven't we?  You are my strong boy, going through chemo with me, helping me overcome fear and finding a way to persevere.  Each day, I look at your perfect face and fingers and toes and thank God that we made it through.  From day one, you have been the sweetest little man.  I love your creaky noises and that you like to gnaw on my face, or that you can find that spot on my chest to snuggle in for a warm nap.  I love when you look at me and smile, or stick your tongue out after I do, or pretend that you're not interested in eating but in the next second you're insatiable.  I love how similar you look to your sister but how different you are as babies.  I love that despite what I'm going through, you've given me another perspective on motherhood, another chance to enjoy this round of firsts again.  I'm thankful for this time we have together in our tiny bubble when the world was changing around us.

Remember this Mother's Day.  Remember it because it was different, and hard, and pivotal.  Remember it because it forced us to change, and pause, and see it from another angle.  And remember that this Mother's Day, and every Mother's Day, I am blessed beyond words to be your momma, and will always fight to be there for you as long as I am able.

Love,
Mommy

chemo #6

Chemo #6 today and my second on Taxol.  After getting through the first round of Taxol and knowing what to expect, I felt a bit more prepared for this treatment.  (Not prepared for what actually happened, but we'll get to that...)

Posing with the #6 sign from my daughter.

These little notes always mean so much!

I normally get bloodwork a few days before treatment, but due to everything going on with COVID-19, I wanted to minimize visits outside of the house of any kind, even to the lab, if possible.  So I called my oncologist's office last week to ask if the bloodwork could be drawn at my office visit prior to treatment and was given the okay as long as I could arrive earlier.

A note about doctor's offices... They are constantly making updates due to the pandemic to keep all of us safe.  I have visits every 2 weeks, and at my last visit there was a physical barrier to direct patients to stand back at registration but this time there was a glass shield enclosing all the registrars and the waiting room was reconfigured for social distancing.  I think about how incredibly busy my oncologist's office was at my first visit when everyone had someone with them and how different it is only a few short months later.

Despite my earlier arrival, my blood wasn't drawn until the end of my visit, so by the time I made it to treatment, the lab hadn't released the results yet.  That meant my nurse had to wait for the green light from my oncologist before my infusion could start.  I already had my cap on and port accessed but we had to wait.

Once treatment started, things progressed pretty quickly.  Like the first time, the Benadryl nearly knocked me out... but I couldn't quite let myself drift off to sleep.  Have you ever felt like you were crawling out of your skin?  That's how it felt about a half hour in.  I stretched my legs and just couldn't get comfortable, like my body was telling me something.  I figured maybe it was time to eat so took out my packed lunch.  After a few bites, I had to stop because it felt like my stomach was burning.  My face felt hot and my eyes started to water.  I actually took a picture of myself to see if I looked flushed and my eyes appeared red.  It was hard to decipher if I was more short of breath under my mask, but I knew something wasn't right.  So I told my nurse I felt weird, and couldn't quite explain it, but she stopped my infusion right away and I saw her dashing around the corner while my eyes were getting heavy...

When I felt alert again, it was like suddenly there were 4-5 people in front of me, all doing different things and talking to me.  Through the fog of my brain I still remember being impressed by the coordination.  I was flushed out and given more Benadryl and Pepcid, and my vitals were monitored.  My heart rate was high but otherwise everything else appeared okay.  It seems I had a mild reaction to the Taxol.  My oncologist was contacted, and once I returned to baseline we had to wait another 30 minutes before restarting.  I think back to this moment now, and how it could have been much scarier but the nurses helped me through.  I'm so grateful for the team of nurses that had assured me they were trained for dealing with instances such as this, and that I actually saw it in action and know that to be the truth.

The rest of treatment was uneventful except that the added time due to all the delays had me wearing the cold cap for close to 7 hours.  That definitely left a mark...

A really long day with the cold cap on. And the mask too...

And by the time I left the infusion center, it had already cleared out for the day.

I saw at least 4 other patients come and go in the time I was there.

After all of that, tired is an understatement.  What a day.