March 28, 2019

Catch-Up Part I

Cancer Sucks.  I know I've said it before and guess what I'll keep saying it 
My last post on March 7th brought you up to February 12th when we learned of The Brain's latest diagnosis of Grade 4 GBM.  Life has been an ugly downward spiral since.  
I started writing this March 20th, today's the 28th so~there will be a Part II.

February 15th we started the first of two Avastin treatments.  The infusion facility at MD Anderson is amazing.  Every module has its own view of the St. John's River.  The entire process takes about 4 hours while the actual infusion lasts only 30 minutes.  Improvement is usually seen after just two treatments and sadly The Brain continued to decline.  

On March 1st The Brain was dependent on a walker.  As a GBM may spread into the spinal column he had a 3 hour full spinal MRI.   By March 8th, the final Brain MRI, he was completely reliant on a wheelchair for all mobility.  I really didn't need any tests to tell me the tumor was spreading.  The scans did reveal the tumor was not yet into his spine.  We ended treatment with Dr. Cavaliere and registered for Hospice care the next day.

In-home Hospice/Palliative care is about the quality of life.  Having the proper equipment to safely keep The Brain at home,  Home health aides to help with his care,  and support for the family through social workers and other therapies.  

Due to half rather than misinformation on a social worker's behalf, I was informed there was only one company that provided Hospice care in our county.  Actually, there is only one Hospice in-patient care here in Clay but there are other options.  The reality is when you're confronted blindsided with the idea of hospice care most people are unprepared and overwhelmed.  I feel guilty about not having done more research.  The reality is that having one less decision to make because there were no other options was a relief when making so many others at the time.  The two nurses who handled our in-take were wonderful (I've now likened this position to the front end sales person or drug reps).  We signed intake papers Saturday and the equipment was there Sunday.  The issues I had seemed petty at first, but when you stand back they do pile up.  (Hospice replies are in Purple)
The hospital bed made horrible noises when raised or lowered ~ some of our beds are older but they're just fine. Intake said you cover all meds related to his hospice care ~ no the drugs our Dr prescribed aren't directly related to the tumor so we don't cover them and in your spare time please go to your pharmacy and pick them upWe're short staffed this week you'll be assigned a full team by Monday 3/18.  There's more like this but I brushed them away thankful for any help we were receiving. 
March 17th: I knew something was off when he woke up; his speech was a bit slurred and his vision seemed unfocused.  The girls agreed so I call the emergency number.  The nurse checked his diagnosis and said: "Oh with a Brain Cancer this is to be expected".   UM no actually it's not, I'm pretty sure he's had a TIA.  "I don't think so but if you're concerned I can send a nurse out"  Yes, please! ARE YOU READY:  "WE only have one nurse for home visits on the weekend I'm not sure when she'll be out to you.
I'm gonna let that sink in...... One nurse for 3 counties of patients. 
Nurse Pat was wonderful.  She spent almost an hour here.  She sweetly said that she was glad she decided to come here instead of heading to another town first.  My diagnosis of a TIA was spot on.  She suggested we could take him for a CAT scan but we all agreed against it.  We felt that the transport and the chances of them being able to do anything outside of confirming a TIA was all that would happen just wasn't worth the stress he'd endure.  The Brain was actually feeling better as the day went on even though he wanted Chinese instead of the traditional St Patrick's Day meal he always looks forward to.
Monday morning I call into Hospice needing supplies and wanting to get a lift as I can no longer get him in and out of bed. Also, I was actually surprised no one had called to check on him after Sunday.  The first line isn't working. neither is the alternate line.  The EMERGENCY LINE is down.  I called every number on the back of their folder. they were all out of service.  I call my social worker, her number worked but her mailbox was still full (I had tried calling Friday).  Thankfully my CNA left us her personal cell.  She was able to have the nurse call.  I appreciate that she was with another patient at the time but her dismissal that it's no big deal you couldn't get through if there's no emergency wasn't comforting.  I told her I needed a different catheter and well it all fell apart from there.  I had one size in my hand and I needed the next size 23cm.  She argued with me that they only come in 14, 16 or 18.  After going back and forth I said I'm done and hung up.  She called back and I said I can't do this right now.  Her next step reassured my decision to leave this company.  ALL of my kids received a voice mail from her.  She was concerned about their Dad, I hung up on her and she'd like to come by but was worried about the safety of the situation.
There is no one else I can to talk to as THE PHONES ARE STILL DOWN
The phones were out of service until Midnight Wednesday night.
Thankfully there is another Hospice that services our area.  Tuesday they came to the house and Wednesday they moved in their new equipment.
So that's Part I
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Beautiful view of St John's from Infusion Floor at MD Anderson

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  1. Bren, thank you for sharing. I am home most days and if you need a few minutes break, call me. I don't live that far from you. Also, please explain the term GBM. Love ya. I'm also sorry you had to go through this.

    1. Hi Marachel, I keep forgetting that not everyone has to live with this cancer vocabulary (so I’ve added a link). A GBM is a Glioblastoma: Aggressive form of cancer that can occur in the brain or spinal column formed of astrocytomas. They usually Grade IV very aggressive

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