In Hospice care
Hello CSN
This is an update....on March 18th I had my 2nd Radiotherapy Mask made in preparation for twice daily super high dose Radiotherapy, to the same areas plus more , as I had radiated in 2018.
But by the evening of the 23rd, I was admitted to the Cancer Center hospital, dehydrated,getting Lactated Ringers solution to volume up , and being suctioned so I could breathe. Weight that night 64 pounds . Tonight it is 62.6 pounds.
Both my Emergency Dept doctors began pushing Palliative Care and then ultimately hospice , upon my workup / assessment .
I myself had already changed my Code status to DNR, earlier in the week .. My longtime Internal med doctor 100%agreed with me, on the DNR.
I am home with hospice care for now. My condo, wit a total of 24 stairs,--- is full of too much medical equipment.. Alli need are the 2 suction machines.
I'm allowed to be here only with 24 hour supervision. My doctors said I'm at High Risk of death, outside of the hospital .
In the Emergency Dept my doctors put a Hold on my long time ( 31 years) intravenous immunoglobulin infusions, and now they are completely Cancelled. Why?? Because they said I'm dying of Metastatic cancer, its terminal and there is no reason to keep getting very expensive treatments . So, those are over....
Hospice is looking at Skilled Nursing Facilities and there are lots of them around here .
The tumors have spread dramatically . I have a" High Tumor Burden" in my neck. I can easily feel it too, Andi have trouble breathing.
Alright. ... I finally started thinking a lot. Both my Medical oncologist and my Radiation Oncologist offered plans, and I ultimately accepted my RO s plan and signed off on the Risks of my dearth, along with it all ( getting radiated AGAI N in the same areas, risks of death, side effects) and I got my pretty little mask made ...My Techs even cut out the eyes . My R O Saud it would be 2 weeks until treatments started, for the Dosimettrists and the Physicists to figure out targeting on my large extensive new tumor...
Then i end up in emergency dept. Doctors there could readily SEE that I was in no shape for twice daily high dose Re irradiation. Thus began long " talks", with them talking and me writing because I have no voice since this metastatic cancer has reached my larynx.... About Palliative care and then the second doctor pushing for Hospice. I've known the Terminal prognosis already with this new cancer, so it did not surprise me . lone of the doctors has cared for me before. Dr. John so is a Hem/ Onc Hospitalist. He was my doc in June, with pneumonia.
I leave you with his summary of us in a meeting for my advanced care planning.... I'm now tremendously weak , 62'pounds, on high dose steroids trying to reduce swelling and idle nation from the tumors in my throat , trying to help me Breathe. I'm on a lot of meds::::
ACP (Advance Care Planning) by Joshua B Johnson, MD at 3/24/2022 10:00 AM
Advance Care Planning
Advance Care Planning done Face to Face Advance Care Planning was done with: with:
Patient participated in family meeting..
The following was/were discussed: Counseling/Coordination of Care, Diagnostic results, impressions.And/or recommended diagnostic studies
Prognosis Weeks to months
We discussed healthcare options for end-of-life care
We reviewed goals of care
We decided among options for treatment.
Patient endorses concern over ability to tolerate further cancer treatment, understands she has limited life expectancy with or without treatment. She also raises concern about weight loss and malnutrition. Given these issues she is interested in meeting with Palliative Care and referral to hospice.
I spent a total time of 25 minutes doing Face to Face Advance Care Planning.
Joshua B Johnson, MD
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