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.
7 thoughts on “St Jude – Tuesday Routine”
Hi, Honey. So glad you are doing your “steps” but I feel guilty about not doing any walking since last fall. I was waiting for the cold winter weather to go away, so now am not sure what excuse I have. I will try to do some walking tomorrow; you are such a great example. Love you, Grandma.
Did Julie leave an extension? They typically will leave a direct extension when they ask you to call back. Barring that, if you call the office they’ll be able to pull up her file and see who it was that called her. There is also likely a letter at home, or that was sent to your house today (or Summer’s apartment – whatever you listed her mailing address as on her application) that will say something to the effect of “We are trying to reach you. Please contact us at this number and this extension between these hours within ten days of the receipt of this letter.” It may or may not give you the name of the person who initiated contact; sometimes it will just give you a general number if her case hasn’t yet been officially assigned to a specific adjudicator (official title of the people who process and review applications at the initial and reconsideration levels).
All that said, with Summer’s diagnosis it is highly unlikely she will have to wait that long for an approval. They’ll pull her records from her two previous treating facilities, see the diagnosis and treatment plan meets a listing, and approve her at the initial level. The extended decision process happens when there is a lot of medical evidence from multiple sources to gather and process; it’s a great sign that somebody is already calling her back because that means someone is already working on her file and it’s not sitting on a desk somewhere just waiting to be reviewed.
We had a claimant last year with a listing level liver condition and he had his approval within weeks of filing his application. Quick approvals are rare but they do happen, especially in cases like Summer’s ❤️
She did not leave an extension. Just adding more challenges to the game. Thanks for the heads up on wait times.
YOU ARE DOING AMAZING KIDDO..I AM VERY PROUD OF YOU..YOUR ATTITUDE IS GREAT..SO HAPPY YOU ARE BLOGGING AGAIN..SO WELL WRITTEN AND INFORMATIVE TOO..GREAT JOB!!!!!
I try! Thanks for being so supportive through all of this!
Try making some “rice socks” for the cold. Pick up some large stretchy fuzzy socks from a store like Target and fill them with uncooked rice. Tie the tops into a knot and microwave for 2-3 minutes per sock. Don’t fill too full and they mold beautifully around your neck. My seniors (yep, those awesome 80 and 90 year olds….) found that they work great for some headaches and stomach aches as well. Mostly, they put them around toes in bed.
I will make sure Summer reads this. Might be a good craft project as well!
Comments are closed.