Day 198: Recycling Day

I can’t decide if keeping track of our life in days is relevant any longer.  We passed the 6 month/Day 180 mark without even a nod. I looked back at my calendar to see what we did on Day 180 and all it says is “Recycling.” I think we did, in fact, put out the recyclables that day. I wish I could climb through a wormhole to 6pm on July 20th and whisper to my crumbled, shaking self,”Six months from now, the most exciting thing that will happen in your day is that you will take out the recyclables. Shhhhh. She will be alive in your arms in six months. The day will be so boring that you won’t even realize you have six months under your belt.”

I look back at myself – my old self that existed before July 20th. I look at pictures from our old life and they are not real. We never existed in that place without leukemia. Those 17 months were a dream and I’m not sure that I was ever that mom. There I am, sitting on the bed, brushing Elsa’s sweet straggly hair and sniffing the crook of her neck. Here, let me try that wormhole again: “Stop!” I yell. “She’s sick! She is going to be so sick!”

I don’t just try to move back in time, either. When I’m not gazing at photos of my old self, I’m desperately trying to peer around the corner, into the future. I’m horrified at the thought of being caught so unawares again. If I adequately prepare myself for every possible outcome, then my future self will never have to look back morbidly on my old self and say, “Poor girl. She never knew what was coming.”

Six months in and all I’ve got to show for it is an obsession with wormholes. No, No. We have so much more to show for it. That’s just not fair to say.

Now, I feel like I need to valiantly defend myself here against an onslaught of criticism (which, by the way, I realize is, largely, in my own head).  I know I’m supposed to live in the moment. That’s what cancer does: It wakes you up every morning, hammering your brain with a litany of, “Enjoy this day because I could take it away any moment, ya know.” I realize that I cannot dwell on our past or all the unknown possibilities in our future. I also know that I’m not supposed to get caught up in the stories of other, sicker children. Truly, it is unfair to those children and their families for me to waste our good fortune. I know! I am drowning in the guilt that comes with this knowledge. I know. I know. I know.

It’s just that, while I’m sniffing her sweet fuzzy head, I’m always keeping a look-out for any sinister goings-on in there. I’m always half expecting my future self to materialize, wide-eyed in front of me, whispering urgently, “Stop! Look! Hold her tighter while you can.”   I want to ask my future self if we will get out of this unscathed.  Will we get to keep her? Five years from now, will my greatest concern be that John take out the recyclables the night before so that we don’t miss the truck?

Back through the wormhole she goes. Questions unanswered.

_____________________________

Ugh! Why does this always happen? I, truly, intended to log on and type the following:

Hi friends! No news is good news! This week has been wonderful and we are greatly enjoying our chemo vacation. The worst news we have to report is that Elsa is two-years old and, thus, driving us totally insane with normal two-year old stuff.

Instead, I started rifling through old, unfinished posts and found the one above. I remember when I originally wrote those ideas, some months ago, I had run it by John before publishing (which I rarely do). His reply was, “All that talk of your different selves sounds confusing,” so I abandoned it for awhile. Today, I got lost in those old thoughts and ended up writing a significantly more melancholy update than I had originally intended.

See, I’ll prove it to you. Look at us this week; It was great!

Numero Dos.

All kids birthdays are an opportunity for parents to sit back and exclaim, “Where has the time gone? How did this happen? Where did our baby go?”

This birthday, though? It felt a little tenuous. A little too delicate to plan anything in advance. There has been this tiny, but exclamatory “wow,” in my head for the past couple of weeks. Wow, she is two. Wow, she might not have made it to this birthday. Wow, our life is so radically different from what we imagined it would be, one year ago. Wow. We are here. At two.

BUT! A real birthday, it was! As a present, we were handed an absolutely brilliant two-year old for the day. Brilliant to look at. Brilliant to be around. Brilliant and shining and fun. We’ve had a few days since treatment started (like this one: Day 169) where John and I can imagine what Elsa would have been like had she not gotten cancer. Today was one of those days. We lived each hour today so effortlessly. She roamed the house during her birthday party like the toddler I remember from 6 months prior. The toddler who left me breathless as I chased her through the library and who scared me with her independence and fearlessness. She played with her grandparents and two of her bestest (grown-up) friends. We couldn’t have any other kids over because her counts are so low, but she seemed none the wiser. Once everyone had left, I realized that she hadn’t cried out for me once! She was too busy for mama/nana and I couldn’t have been more pleased. Busy is good.

*******************************************

Good morning Two!

Birthday Morning

 

Party Time!

IMG_1447

IMG_1440

IMG_1439

IMG_1430

Hospital Room 810, in pictures.


First day. Fevers.

IMG_1342


Technically, not Room 810. John and I snuck downstairs for an ice cream date while John’s parents stayed in quarantine with Elsa.

IMG_1341


Day Three.  Elsa finds my artistic attempts dubious.

IMG_1339


John and I were allowed to leave the 8th floor, as long as we wore a mask. It was just the 8th floor itself (the kitchen, the playroom, etc.) that was off limits. Elsa, of course, was not allowed to go anywhere.

IMG_1344


Day Three: Hanging with Grampy

IMG_1346


Day Four: Somebody please get this kid a blood transfusion.

IMG_1383


Day Four

IMG_1380


Day Five: Looking eerily like Day Four, eh? Yeah, that’s because it was.

IMG_1379


Standing at the door. Wishing she could get out. Wishing her tether was longer.

IMG_1378


Have I mentioned before that she is a pretty intense kid? I mean, they’re just gnomes! Relax a little.

IMG_1376


A snack before they set us free on Day Six. For a combination of reasons, she refused to eat one bite of food for the entire six days. Had she not been nursing, we would have had to have some awful conversations about feeding tubes and supplementary nutrition. It felt funny to be supporting her on my milk alone, like when she was an infant. Plus, it was exhausting for my body and soul. That said, I’ll take nursing exhaustion over a feeding tube any day of the week.

IMG_1375

Day 190: Let loose

Six days later, they let us loose! Turns out we all had RSV (Respiratory Syncytial Virus). Blech. Her ANC was 0 for two days, which means she had no immunity to anything (anything!) and her fever ran in the 103′s-104′s for a few days before she started to turn the corner. She needed one blood transfusion and one platelet transfusion, but otherwise, it was a pretty uneventful stay.

None of us are at 100% right now, but we are exceedingly happy to be home. We are free to move about the house as we wish. We can go to the kitchen and make food whenever we want. No one pesters us at midnight and then again at 4am to draw our blood and check our blood pressure. No IV pole. No needle in her chest. No diarrhea-inducing, belly aching IV antibiotics. No mechanical bed. No fluorescent lighting. No hazmat suits. No masks.

Home is the best. THE BEST!

That being said, I am waiting for the stress and panic to dissipate. Something in my brain keeps shouting: “Her counts are so low! She is going to get a fever again. You are going back to the hospital. Don’t get too comfortable.” And it is possible. We could go back again before we are really out of the woods. I know it is no use brooding over it, and we should just enjoy the time we have at home. Everyone will tell me that. I know. I just need to figure out a way to intercept that shouting voice . . .

Next stop on the cancer train? Clinic on Monday to check if she needs any more transfusions. Next round of chemo (Interim Maintenance #2) starts the week after.

Oh yeah. One more thing: Delayed Intensification is over. OVER!