'Twas the Night Before Consult in Here Be Dust

More prep:

(1) Joined websites PatientsLikeMe.com and Breastcancer.org;

(2) Checked into taxi services and touched base with the one I'll likely use when I need to (but see (11), below);

(3) Drafted various correspondence;

(4) Decompressed: caught up on (and am enjoying) "The Tonight Show Starring Jimmy Fallon" (thank you, Hulu!) -- first time I've tuned into that show since Carson. Also decompressed by sitting at "my" picnic table at our community park;

(5) Read the Amer. Cancer Society's 133-page breast cancer guide -- my questions for the surgeon topped out at 21 before I printed them out. I'll add any new ones by hand;

(6) Taxes; my accountant now has me on the fast track so that the gov't. gets its cut before I go into surgery;

(7) Dropped off a printout at the hospital of a fellow caregiver's latest blog, to go to a nurse who took very good care of me during my biopsy and who is caregiver to someone with epilepsy. The blogger cares for her brother, who has intractable epilepsy, and I was telling the nurse about the blog during the biopsy;

(8) Left my contact info and message for the nurse who did my biopsy pre-op, because I'd like to treat her to lunch and pick her brains after hearing about ways she helped heal from her own breast cancer.

(9) Scoped out the location of the place near the hospital where I'll have my consult;

(10) Shopped and broke the news at our natural foods store; one staffer there is a 17-year cancer survivor;

(11) Stopped at a well-recommended in-home care company and had a terrific talk with a coordinator about all the options available. Given my situation with M, what I've learned gives me tremendous peace of mind. I'll reconnect with them after the consult.

(12) Conducted successful test of a newly-purchased body pillow as a way to keep me from rolling onto my left side, since I'll need to keep off it after surgery.

(13) Wrote the following memo to give to the surgeon:

I live with my partner, [M], who has MS with significant damage to her prefrontal cortex, along with hydrocephalus ex vacuo. Although extremely articulate and with strong intellectual reserves (verbal scores in the 90+ percentile), she has deficits in cognition, emotional control, and executive function (other test scores as low as the second percentile). She also has anosognosia (lack of psychological insight into her condition). I have been her caregiver since 2001.

Because of this, she does not hold POA or health care proxy for me. My friend [F] does (document is attached). Should I be hospitalized, however, I wish for [M] to have visiting privileges. I will likely use [company] for my own in-home care where necessary.

I write this memo because I need [M]'s deficits to be taken into account during my treatment, but also because she has boundary issues, coupled with what her neurologist ([Dr. G]) refers to in his notes as delusions, especially with respect to medicine. She holds degrees in biochemistry and immunology. I have a note from her GP, [Dr. N], attesting to the fact that she is noncompliant with medications.

I am concerned because I do not want [M]'s behavior to in any way jeopardize my own health or medical treatment. She self-diagnoses herself (I have a note from her gastroenterologist, [Dr. R], attesting to the fact that a gastric bypass had not been secretly performed on her; she insists that it has, along with other "secret" surgeries). She also tries to diagnose me. For example, she believes that her taking of Synthroid for hypothyroidism (and which she had discontinued taking against doctor's orders) had played a role in my cancer diagnosis (due to colloid nodules being outgrowths of thyroid tissue). She had insisted on being on our other land line phone when I returned [surgeon's assistant]'s call earlier today; I had to hang up and call back on my cell phone.

In short, I need a way to communicate with my medical team away from [M], so that I can get the information and care that I need. I know that she will be upset at not being included in consultations, and I know that she can make some good contributions, but she can also be disruptive.

I know that my treatment requires good teamwork, and I want to know how I can best be a part of that team, given my domestic situation. Many thanks.

[end of memo]

My TMJ has been flaring up like nobody's business -- the last time that happened was about 25 years ago. It's a stress response, so not surprising. I've been taking ibuprofen when I need to and otherwise am taking advantage of the cold packs from my biopsy, which are perfect for holding against my face. Every now and then I feel a bit of nausea, again from nerves.

I am not only fighting cancer; I am also, in many respects, defending myself against M despite her best intentions. When I have to, I tell her, "We have to stop" and I have also had to tell her, "Get out," when she refuses to leave my studio. I am immensely thankful that I had installed a doorknob that I can lock from either side, because after I lock my door I can feel myself calm down.

For instance, on learning yesterday that M's brother-in-law is in the hospital for something that might need surgery, M started going on and on about how this was a euphemism for him being in prison, since for years she has believed that he is a serial killer. I know it's her disease talking, but now I'm concentrating much more on what I need and am asserting myself more. That's my disease talking. I can tolerate only so much of her craziness.

The other day she was quizzing the pharmacist because she believes the topical steroid cream prescribed for a spot on her cheek had given her cramps in her legs. (I'm voting for her MS on the cramps; she denies MS has anything to do with them.) The spot, already fading very nicely, is likely an irritation due to something she had slept on. The pharmacist was saying things like, "Well, you do what you want, but I'm telling you that..." because she started arguing with him, going on at length about her connective tissue.

I reminded her that we're both having various stress responses right now.

She asked me, "What's your stress?"

I looked at her.

I said, "You're kidding, right?"

"No, I really want to know!"

I said, "I have cancer?"

Then she remembered. She had been focused on her cheek spot.

That's another reason I'm leaning toward in-home care. In addition to any physical help (at this point I don't know how much I'll need after surgery), I might need someone to be a buffer between M and me. I spelled out the situation to the in-home care coordinator, who said that her staff is trained to deal with people who have Alzheimer's. There are three levels of help: homemaker/companion services, personal care services, and private duty nursing. Services also include errands like grocery shopping and driving to and from medical appointments.

The night after I spoke with the coordinator was the first night since my biopsy that TMJ pain didn't keep me awake.