St. Jude – First Week of Chemo

The first couple of days are done… And the verdict is in… This is gonna be a long 7 months!

Summer had Chemo treatments over the past few days…  Some of them are as short at a few minutes…  but, one of the sessions is as long as 6 hours.  She had small doses of chemo when Summer was getting Proton treatment, but those seemed to have little effect on Summers day to day energy.  That is not the case with the current treatment.  I was midway into asking her about her energy level when we were doing a facetime video with each other when I got the answer visually.  She is curled up in her bed and laying sideways while talking to me on the call.  Energy is low!

I then asked if she was getting decent sleep at least?  Summer was quick to inform me that the nurses wake her up every 90 minutes to go to the bathroom… They want the Chemo medicine out of her system ASAP so they push her to all night about this.  (This sounds like the worst part!)

This is the day-to-day that Angela and Summer have been dealing with since the start of the inpatient treatments.  After 4 days…  There will be 3 days off.  What “off” really means is hard to say.  I am guessing Summer will continue to be low energy, and will eventually be locked away for immune system concerns.

Angela added to the misery by saying that the mattress for the caregiver in the room is a rock.  She said she I better bring a camping mattress pad with me if I want to sleep at all!  Yikes!

OK…. That’s enough complaining.  I was having a couple of thoughts I wanted to share so I don’t want to scare anyone away…

1.  Messages and texts for Summer are all good.  Anyone close enough to her to have her cell phone number should take time every week to send her a message.  Facetime calls are fun as well.  I called her the other day to show her our kitten in the garage and when I walked outside I found 3 raccoons in the garage.  It was hilarious and completely unscripted entertainment for all parties.  When you are stuck in bed all day, it’s good to have some distractions.
2. Letters and notes would be great, but we don’t have a permanent address yet.
3. Nintendo Switch?  I have played the Wii and love Mario Cart and Super Mario Brothers….   But I have never played on a switch… So… I have some questions.  If we had 2 Nintendo switches in the room…  Could you play head-to-head games like Mario Cart?  Summer has a Playstation that was sent down by Nate, but I am not sure that moving that between Target House and St. Jude Hospital rooms is going to be practical.  I wonder if anyone has a pair of these things I can borrow for my week in Memphis at the end of this month?  (UPDATE, I HAVE ONE SWITCH BORROWED,  STILL LOOKING FOR ANOTHER TO TRY OUT FOR A WEEK!)
4. I will be heading out next weekend for my rotation.  If anyone has a card or note to send down… That’s the safest way until we get permanent housing.

Lastly, and this isn’t in a bullet point because it’s a bit of a story.  My friend Andrew called me and asked if we needed anything.  It led into a conversation about iTunes and what Summer can actually “use” while laid up in bed.  I was with Summer on several occasions while she was playing games on her phone and I witnessed her watching the ads between games.  “You don’t have premium Wordscape?” I asked.  Summer then told me that she would never spring for a premium version of the game.  She was on level 400 and I am right behind her…  I am already being driven mad by the ads and was ready to pay for the game.  Summer began to chastise me as well.  “I never pay for Premium,” she said.  I understand… And I never do either… So, it is not a stretch to think she probably learned that behavior from Mom and Dad.  After our little tiff about this ad-free version of the game, I asked her how much it was to go ad-free.  She thought it was something like 3.99.  Seriously?  3.99 is all it takes to remove all those time-sucking ads?  Just buy it and get past it!

Related to this was the subject of Apple TV.  Summer said that the 4.99 subscription fees were too much and she would not pay that.  LOL.  I told her to go ahead and subscribe… I would take care of it.  She’s thrifty, I’ll give her that!

All of this is to say… If you want to get her anything…  Abstain from physical items.  Itunes gift cards are probably a solid choice at this point.  Let her get a few bucks banked in the system so that I can force her to splurge every once and a while!  7 more months with ads will get unbearable!

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Lastly… I almost burned down the house.

I came home this week to a smell like something was burning inside.  At first, I thought it was the furnace filter that needed to be replaced.  I went down and took a look.  It was fine.  It was about 30 minutes later I was in the bedroom when I noticed my bed lamp was on… And it was resting on my pillow.  Literally, a mico flood bulb was on the pillow fabric.  Fabric that was now blackened from sitting next to the bulb for 12 hours.

I got VERY lucky.  I share this story to point out that Angela leaving me alone in this house literally puts us all in peril!  I will try to be more diligent in the future!