In Hospice care

Yesterday, Hospice started me on antibiotics because I have Pneumonia, again.

Last week, I was supposed to have my intravenous immunoglobulin in the hospital, but those infusions, which built up my partial immune system ( genetic defect I was born woth). I can no longer get them because they've been cancelked. My Terminal status means I just do not need those expensive life extending treatments anymore .So, pneumonia will come , and sepsis too again if we don't fully treat the pneumonia. My Hospice pharmacist stays in touch with me via email and he told me I may have to go back in the hospital for intravenous antibiotics if these don't work or I can't tolerate.

There is something I want to touch upon here, and that is, for months, and especially the last few weeks, I felt that something Systemic was going on in my body, dragging me down. It became very very dramatic. The Weakness and Extreme Fatigue that gripped me, was very telling. It was just like with my first primary ( before I had the G tube for nutrition, and I lost ability to swalow).

This new cancer, an extensive Metastatic SCC, isn't anything like the 6 recurrent SCC tumors I have already had, some of those occurred after my Radiation treatments. They survived the IMRT/ VMAT radiotherapy!

No, this Metastatic cancer came upon me and Dragged Me Down. I FELT it. Nausea constantly, ...... I would nod off and fall asleep, anytime I sat down somewhere ( like while driving!! At traffic lights, I fellasleep. So I quit driving)... I fell asleep standing up even. Bizarre. My body wanted to quit. Doing anything became a struggle. My weight dropped ( I'm still 63-64 pounds.. ). And I was stumbling , even Falling down at times

I knew something had me in its grip, I just didn't quite know what. Was it my lung disease? I didn't know . But then I saw this bleeding ugly thing in back of my throat.... It didn't explain my symptoms, but it gave me a clue.

So, please take note. If you are a survivor of HNSCC, and you begin to experience a decline in our normal baseline....... If you are slipping backward ...... Don't ignore it. Bring it to attention of your doctor..

Crystal, in Hospice.

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From my Head & Neck Oncology Surgeon, whom had been my doctor since 1992, when I came here in Pediatrics ....::

hey Crystal, I realized I never answered your email.

My apologies. To answer your question, your scans show that the tumor occupies your right tonsillar area, ...it invaded the entire Soft Palate,...it extends into the remaining tongue next to voice box, then it invaded the upper part of your voice box and down the side of wall of your throat on the left. That would explain many of your symptoms of not being able to talk or swallow.

I'm so sorry. You are in our thoughts and not a day goes by that we think of you and your strugg les.

DR. B

It's a massive tumor.... No way to contain it.

Today the hospice social worker Alex came and an R N came as well to check me out.

?For the past 5+ years, I have used a very high quality Pulse Oximeter. Because of repeatedly having significant Pneumonia requiring admissions, etc. Now I have Bronchietasis as well, In the past week, my Oxygen Saturation has been low. In the middle 80s at times. Not good, no wonder I get short of breath.

Today, the nurse told me I have to start hooking up to Oxygen, I have the big units here, on wheels, but I cannot carry one up the stairs. My 14 stairs to my bedroom and bath...... So, at least for now I will use it downnstairs, I guess.

That's all for now. .from Crystal, in Hospice...