St Jude – Tuesday Routine

I think today we have figured out the mechanics of a normal day for the next month. 

Chemotherapy is a bit of a wait outside until they call your name.  10 minutes later you follow her in and have a pleasant talk with the nurses as they set up the “hook-up”.  Its pretty low-key.  After they hook up the medicines, the only thing Summer really says is that she can feel the chill of the fluids as they enter her body.  Summers chemotherapy dose during her radiation is very low, so this time in the “Medicine Room” is only about 30 to 45 minutes of actual sitting.

Physical therapy with Terry today had Summer doing strength training on her legs.  The waiting room is jam-packed in this area, so I go back to the therapy area with her just to get out of the crowd.  We talked a little bit about today’s session after we left…  Summer was making references to Olivia Newton-John or 80’s exercise videos as they have some of the same sideways leg lifts.  She said “those are hard!” and I had to agree… Even though I haven’t done one in decades.

We had a free hour before lunch and decided to try and call the Federal Government back about Summer’s SSI Claim.  I had started the paperwork last month and Summer missed a call from “Julie” while in treatment.  I logged into the site to check her status or figure out who Julie is.  All I could find is that she might work in Peru Illinois.  Then I saw this glorious information panel that said the average wait time for a claim like this is 240+ days.  Glad that our social system is there to help out folks in need during their darkest hours!  Glad Summer is not living paycheck to paycheck.

The menu on the phone system said that we cannot find her unless we have a last name.  I am torn.  Do we call and try to talk to anyone?  Do we wait for Julie to call back?  I think tomorrow we will call the number for the Peru office and see what happens.

Lunch at St. Jude was a mixed bag.  Summer thought rice and beans would be good today… But it was literally white rice with a thick pile of red beans over the top.  It was definitely not Latin style.  She did not eat that much of it and I don’t blame her.   I did figure out a way to have her eat some cake and half a banana.  So, I was pleased.

We headed off to radiation after lunch.  The Proton machine at St. Jude is buried far below the rest of the hospital.  Just like the construction going on at St. Francis in Peoria, I suspect that they are trying to isolate vibrations and maybe even contain radiation.  I am not an expert.  We take an elevator downstairs, check in at registration and then sit with 3 or 4 other families in a waiting room.  When the receptionist of this area says they are ready for you… You leave this waiting room, head down a hallway, and then go down another level to a smaller waiting room.  Like I said yesterday, I cannot go in with her for this part, so I sit out in the is this odd little space of a room.  I did some work on the computer with my time alone today.  All the while, the Bumblebee Transformers movie blares in the background a big screen TV.  Yesterday it was Ferdinand the Bull (A story I loved as s kid, but has been corrupted by a bloated kids’ movie plot).

Summer walked out of radiation today feeling fine.  Her main complaint from radiation is the false sensations it gives your nose.  You smell terrible things as a side effect.  They offer to give you some overbearing scents, but our child-life advisor said Vicks vapor rub is the best thing to overpower it.  A trip to Walgreens might be in order.

The afternoon was half over when we were done with appointments today.  Summer had the choice of exercising back at Target House afterward, or going on a walk with me…  Not just any walk… A walk at some Indian Mounds south of town.  We hopped in the Prius and drove down to Chuckalissa park and enjoyed some southern heat as we walked the ring trail around the small park.  It was not much, but it was all off-balance and had her on her toes to keep from going off-course.  I was there to help!  But I was glad to see her doing this on her own.

The chemo and the radiation have not hampered her yet.  They will…  And I am totally willing to let her rest when she asks for it.  But, while she is motivated, I figured we could take some detours like this.  Especially ones that keep her walking.

The only side effect I have seen so far is that she is getting “cold”.  Something I didn’t think she could do!  St. Jude and this apartment seem to always be in the ’60s.  I had it set at 73  today in the apartment and she said that felt cold.  She was in a sweatshirt and covered in blankets after her shower.  I can actually live with this side-effect!

Tonight at Target House they gave a giant Take and Bake Stouffer’s dinner with french bread and vegetables.  It was actually pretty decent.  Summer ate well.  I did OK as I have been downing, veggies, fruits and salads like a madman during the days to balance out all this junk food around here!

 

Tomorrow: Speach Therapy, Chemo, Youth Group, and Radiation.