A Space for Mucosal Melanoma Caregivers
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results
CT came back clear! Yay! Another new ugly infection, though. Sigh… Amy needed an unusual drug not commonly prescribed so the pharmacist had to call around to ask who stocked it. He is the best. Today, a new urologist called with a dec 5 appointment. No idea what he can do for her but he
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scan Day
Here are we again. Time for another scan. It’s always unsettling waiting for results and…Amy has another infection. She called the urologist and he won’t prescribe anything until nurse takes a sample on Wednesday. But when her urine smells like ammonia she knows it’s that awful bacterial infection she had last week. Sigh… On a
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Low
I’ve watched 2 YouTubers that do caregiving for cancer spouses. I’ve noticed they never talk about anger, frustration or irritability. They might talk about fear but not the debilitating fear that comes from waiting for the next phone call, next scan, next symptom. They might mention sadness but not the overwhelming grief that comes from
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infection
Another one! Bacterial. It’s a bad one.When the results came in I started to shake. PTSD much? Amy looked pale yesterday and her urine smelled like ammonia so, I’m not surprised. A bit of a panic trying to find someone to give her a prescription because the urologist doesn’t work Friday so she went directly
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not coping
The grief is palatable. Email from urologist said he wanted to wait and possibly never do surgery. He would try removing nephrostomy tube and doing a different procedure but even that sounds questionable. It’s one thing to wait for something that would hopefully make life easier but now it feels like this is as good
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the wheels have come off
Three surgeons agreed surgery is very risky. Oncologist, urologist and plastic surgeon all agreed she needs surgery but is it too risky? Right now Amy has a ostomy bag for urine and one for poop. She also has a tube coming out of her back to drain urine into a bag worn around her ankle.
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nervous
Another big appointment tomorrow. Unless you’re in this mess you can’t possibly understand what it’s like to live constantly on the edge. If you read this could you please let me know. Sometimes it’s ok to just blather on to no one but right now I’d like to know that I have one ally.Meeting with
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again
Soooo…waiting again. We’re waiting for appt with two surgeons. That will happen in 2 days and the anxiety has exploded. This time we will discuss how to close the fistula. It sounds like it should be a quick and easy surgery but I’m guessing it’ll be slightly more complicated. Because we don’t know what to
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anger
Why today? I feel so much anger and resentment from things that have happened years ago. Why does it pop up seemingly out of nowhere? Like the person I asked to do a Costco during Covid. We were over our heads with cancer stuff and I thought she won’t mind. She was so angry when
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and it continues…
Last week we met with a surgeon to discuss removal of a pouch that’s developed along Amy’s incision line. The surgeon was less interested in that benign growth than she was in the horrific number of infections and hospitalizations she had. Everyone agreed that the fistula leaking urine into her gut is actually the more
Rainbows and Black Unicorns 