The Fine Art of Negotiation (copied from blog entry dated May 3, 2014)
Also posted on Facebook:
"Got approved for financial coverage of the anti-nausea meds (yay! and whew!). Delivery is scheduled for the day of my surgery, but the pharmacy agreed to send the drugs directly to the cancer center (yay! and whew!). I'm not supposed to take them until I get clearance from the chemo nurse at the time of chemo, so this is perfect. Also had a great, long phone conversation with my Reach to Recovery volunteer -- she had worked for years in the cancer field and is also a survivor. What she told me makes me feel all the more confident in my decision to run through this gauntlet. Last night I burned the midnight oil and then some, putting together instruction cheat sheets and reminders and posting them throughout the house."
I posted this yesterday on Patients Like Me:
"Been having good talks with my partner, given that we now both deal with chronic illness. My main concern is getting backup in case my partner overreaches and can't provide transportation when I need it or handle any potential side effects I have -- I have a couple of agencies I can call, but I don't yet know what I'll need (what shape I'll be in). Am also concerned because partner wants to get a lot of things done -- hedges taken down so they don't overrun the house (even though I had lopped them down considerably prior to surgery), her new bed replaced (she decided she didn't like the model and waited until the exchange period was almost over), brush removed (she insisted she could handle it, then changed her mind), etc. Getting all that coordinated usually falls to me, but I have my hands full right now, so I'm trying to prioritize while dealing with her anxieties and sense of urgency. I've been trying to lighten my load while she's adding to it."
Update for today: Negotiations with M continue. I am being very careful not to overextend myself. Push-back isn't pretty, but it's beneficial in the long run -- just like chemo! :-)
Speaking of which, I was asked the following on FB: "If you don't mind me asking, was alternative medicine ever a consideration for you or have you been set from the start with chemo? And if you waffled between the two, what was the deciding factor of chemo over alternative medicine?"
I answered, "When chemo was brought up I looked at the research and scoured the cancer forums. That included looking at alternative medicine and associated sites. I also talked to people who either are or know cancer survivors. Some went through chemo; others chose not to. I also factored in my personal situation here, and my living conditions as a caregiver (trust me, they are well beyond the pale). The main factors that decided me on chemo included (a) the research and the odds for someone in my situation; (b) the support network(s) available, especially given my living situation; (c) the task loads associated with each strategy, which get added onto my caregiving; and (d) personal testimony, including those from people who had chosen not to go on chemo and who later wished they had."
Questioner: "I'm surprised to hear there were folks that survived cancer, but that had chosen not to go on chemo and wished they had?? But they survived without the harsh poisons?"
Me: " The reason some people who did not choose chemo later wished they had was because their cancer returned and was far more aggressive. As the oncologist told me, treating my non-aggressive cancer now with chemo shuts it down. Not treating it with chemo leaves open the possibility that it will return in a worse form. It's the difference between using chemo to eradicate the cancer and using it to try to control a cancer that can't be eradicated. I just had a long conversation with my Reach to Recovery volunteer, who worked for years in the cancer field and is herself a survivor. She said she's seen far too many times when people chose to skip chemo and then had to deal with a much tougher cancer. That said, chemo does not guarantee that I will live the rest of my life cancer-free, but it improves my odds, especially given my age. I will have another decision to make once I'm done with the four cycles (given once every 3 weeks) of two chemo drugs. I will have the option of taking a third chemo drug for another 12 weeks. How I respond to the four cycles will yield another risk/benefit equation."
Errand Day (copied from blog entry dated May 4, 2014)
I'll need to wear long sleeves while undergoing chemo, so I picked up a couple of light-fabric, long-sleeved shirts that I can wear separately or slip on over a tee. Found trays to make "ice sticks" to suck on. Did three loads at the Laundromat and had an hour-long phone conversation with a friend while there. Reserved transportation for Tuesday's surgery to get a port put in. Did food shopping. Got more hand sanitizer and soap. Mail at my PO Box included my new lymphedema alert bracelet, offered free from Peninsula Medical:
Originally I was going to drive to the hospital and M would drive me back after I got my port, but she's worried about some new drips under the car and wants a mechanic to look at them. It's just as well, since she's not accustomed to driving my car -- we had a test run yesterday when everything was calm. Surgery day will have considerably more variables, especially since I won't know my hospital arrival time until Monday. I'll be using the same cab service (experienced in transporting medical patients) that I had used for my lumpectomy.
Fortunately, the cancer center where I'll receive chemo is only 3-1/2 miles from home, compared with about 15 miles between home and the hospital.