Living in One Room

by Julie
Published on: October 29, 2011 8:36 pm
Comments: 4 Comments

It doesn’t seem like it should be possible to update a blog so many times in one day, when all you are doing in living in a single room.  We don’t leave this room, usually not even to find food.  We’re entirely contained in room 703, 7th floor East.  And yet, there is constant eventfulness.  I wish so much didn’t happen in one day.  All of the thoughtful “how to kill time” gifts – I wish Phenon had used all of them and was bored to tears.  But we’ve barely touched any of them.

So, after all of the IV portal adventures, Phenon napped.  A well-earned, “loopy” nap.  Then my parents arrived (Grammy and Papito).  They visited with us very quietly while Phenon continued to sleep.  Then came my brother (Bobby), my sister-in-law (Tania), and my nieces (Fiona & Kayla).  Phenon woke up to party.  Turned out my family was showing up to celebrate my birthday a few days early because nobody would be able to make it to the hospital on Halloween (in case we’re still here) or because we’d all be home exhausted and not in the mood for a party (in case we get to go home by then).  So, they were all apparently here to celebrate my birthday.  I didn’t know that ahead of time, but Phenon had talked to them in the morning.  They had been planning on bringing me birthday cake, but she reminded them that pumpkin pie is the dessert of choice for my birthday.  So, in tromped the gang.  Phenon was alright for several minutes after their arrival.  Then she got hiccups.  With each hiccup, her chest tube hurt more.  And then the nausea hit, and didn’t pull its punches.  I went to the nurses, and they thought perhaps she hadn’t eaten enough today (true) and that the pain meds were therefore making her feel sick.  So we tried some applesauce while everyone was visiting.  Then she had to get some additional medicine by mouth, which tasted bad.  She said she didn’t feel well and needed a bucket.  I barked at everyone to leave the room, and Phenon vomited, painfully.  But she didn’t want everyone to leave.  She recovered, slowly and painfully, and the “party” resumed.  We narrowly missed an actual lighting of candles in the room (good catch, Tim, what with all the canisters of oxygen and the oxygen feed running by Phenon’s side when it isn’t in her nose).  Phenon ate a piece of pumpkin pie.

Then nurse Chris (of earlier posting fame) stopped by.  What an awesome guy.  He isn’t working in our section tonight, but knew it was the last night he might be able to see Phenon.  He decided to stop by to say he knew she’d be alright, and knew that the whole thing stunk, because he had felt that way when he’d had cancer.  Chris had a sports injury where he broke an appendage, and when he went to the hospital to get fixed up, they said the broken bone was due to his cancer.  Wait, what?   The cancer had hollowed out his bone.  He was 17.  He required 3 months of chemo and then some radiation.  Six months later he was back on his feet.  Said the best day of all of it was when he got his port back out.  That’s when he knew he was done.  Chris said he wouldn’t lie, chemo was gonna be awful.  But she’d get through, just like he did.  It was really, really kind of him to come say those things to Phenon.  He went from all-around nice guy in my eyes to a total daggone hero for coming in and giving her a boost.  Especially today. When there’s no way to sugar coat it.  My family was pretty impressed.  We finished celebrating, and then everyone left.  Then she vomited again.

Afterwards, she seemed relieved and almost cheerful.  She brushed her teeth, twice, and laughed and joked and harassed me the whole time.  Then she decided that with the new port and the angle of the chest tube, she could get out of her hospital gown and put on some real clothes.  Phenon made it through getting a shirt on – hooray!  But the effort of that made her totally sick to her stomach again.  So now she is sleeping.  I just want to pick her up, wrap her in a blanket, and take her home.  Enough of this shit.  She has been brave, she has been terrified, she has been happy, she has been sick, she has been sweet, she has been unintelligible, she has been stoned, she has been silly, she has been needy, she has been tired.  Tim and I have also been all of those things today too (although Tim had the additional bonus of being the one with the strong stomach and the greater resistance to fainting today).   All of those things have happened today, all in one little room.

P.S.  In the time it took me to login to the wifi network here, she has gotten sick again.  That magic wand to make all of this better now?  That’s overdue.  Get on it, people.

  1. Julie says:

    That list of things Phenon has been today included stoned . I said Tim & I have been everything on that list. We have not been stoned. Our experience of the day would likely have been quite different, were that the case.

  2. Megan says:

    You know if I had that magic wand, I’d be waving it so hard it would be snowing fairy dust from here to Florida.

    I was thinking about the bullying stuff we’ve been going through lately with Ace. I know this isn’t the same – cancer vs. bullies – I know. But what I was thinking was I don’t know if I can make all the bullying stop. I can’t control the other kids. But what I can do is make sure that Ace knows that I always, always, without fail, will have his back. No matter what. It occurred to me that this is not an insignificant thing and, while my preference is to make his pain and problems go away, supporting him so he can be strong through it probably means he’ll be okay, despite the trauma. Love trumps trauma, right?

    So, again, I’m not equating bullying with cancer, necessarily, but I was just reading this and thinking about how you always, always, have Phenon’s back, and she knows that. You can’t just pick her up and carry her home, but you can do what you’ve been doing every single minute of every single day through all this shit. She knows you are unfalteringly there for her and that has to help her get through this, just like Chris the awesome nurse got through it.

    Or maybe I’m full of shit myself and just struggling to say something comforting despite your completely non-comforting situation . . . that’s a pretty good possibility, too.

    I’m just going to see if I can get this wand working again and I’m waving it for a restful, painless night for you all.

  3. Eve says:

    I hope when Phenon is up for it, the nail paint pens I dropped off will make her smile. Was great to see Tim & Rowen last night, and look forward to visiting when brave Ms P is back home. Love you all very much.

    • Maureen says:

      Throughout the day I look for updates to see how everything is going for Phenon and you. At times I laugh, but more often there are tears. I wish that the magic fairly would make it all go away! As parents, all you want to do is make it all go away for your little girl. Julie and Time, you are going through many of the same feelings as Phenon, and all of you with lack of sleep which doesn’t help. Your love and strength are some of the best gifts you can give to Phenon right now. You will have a chance to collapse later! Phenon, you have been incredible through all of this. YOU will persevere! We continue to think and pray for all of you.

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