Time to think

Today was the first radiation treatment. My cough is a little better, which was good, because first the therapists (minions of the Machine is more like it) had to do a bunch of studies. The Machine is quite similar to a 2.5-axis milling machine, only instead of drills and burrs it has a gigantic drum (the radiation generator) and a capture plate for the digital images. Blood-red, glowing crosses on walls and ceiling generate overlapping lines of laser light by which the initial orientation of the Machine is plotted, and the two parts describe independent, angled orbits around the patient, who is lying on a platform that itself can be raised or lowered or moved back and forth as necessary.

(See? 2.5 axes. All that CAD/CAM has come in handy!)

The position of the patient on the (narrow) platform begins as one of mild discomfort, with the arm next to the affected breast in a support beside one's ear, and the hand gripping a shaped handle over one's head. Since I was having studies done, I had to hold this position for about 25 minutes. By the end of this time, the discomfort was no longer slight.

The only way to deal with things of this nature is to abstract one's mind and think of other things. Fortunately, I can do that. And the other sessions sre only 10 minutes, so I may not even get past the light haze of beginning meditation.

They give you heated blankets if you ask, too. Mmmm... blankets.

So much for energy...

Today I got out of bed at a reasonably early hour, performed various morning rituals (pills, eyedrops, more pills, read paper while waiting for pills to take effect, make and eat breakfast with (you guessed it) more pills, shower, dress) and made my way to church for the first time in six weeks. I enjoyed the service thoroughly, saw a bunch of friends and took care of some churchly business. Then I gave a friend a ride home and did an errand.

And then I collapsed. I slept for two-plus hours, and would have slept longer except that the phone rang. Yard work will have to wait till tomorrow.

But I did make a delicious soup for supper -- cream of roasted butternut squash soup, garnished with toasted pepitas and blue cheese. We hogged the entire pot, about six cups. I am particularly pleased because I made it up myself -- not squash soup, but the garnishes. \I did the pureeing with my handy stick blender, and there wasn't all that much cream used. Still, I should probably switch to yogurt.

Tats. I gots um.

Today was the first consult with the radiological oncologist. All the nurses and such really admired Dr. Cavillo's work. The radiology technician even said that if I hadn't pointed out the scar to her, she would have had trouble finding it.

And as it happens, they had time to do all the mapping studies today, so I stayed an extra hour and got scanned and tattooed. Since I am large and floppy, they ended up making bubble-wrap supports for my breast. These are kept for use during the actual treatments. They also had to strap me up here and there. Such an unglamorous use of boob tape -- these Hollywood starlets that rely on the stuff to prevent wardrobe malfunctions don't know what they're missing. (And I hope none of them ever have to find out.)

The tats are tiny. What they do is make an x-marks-the-spot with a Sharpie, drop some ink on the cross-hairs, and prick the crossing-point with a needle. It's got all the glamour of a zit. I have one at what might be called center-left, totally hidden by les balcon, and another just below my armpit.

The bummer is NO perfumed skin products, NO anti-perspirants, NO deoderant, and NO powder. Cornstarch, Tom's of Maine Unscented, and goop they'll give me is it, for the duration. And LUSH has a whole host of products I love that are being discontinued, not to mention all the scented soaps and ungents I use daily. But ... it's in passing. All of this is in passing.

And in better news, I have Five O'Clock Shadow Head!

(And apparently I still don't look old enough to be the mother of a 31-year-old.)

Better, but Strange Things Are Happening

My mouth and other spots are doing much better, which is a great relief. However, the peeling skin and other nifty manifestations on my hands and feet are still peaking. I bought a cucumber/shea butter ungent today because I was told not to use any lotion with alcohol in it, and virtually every lotion I've found contains cetyl alcohol. This goop does not, and it feels most refreshing. Time will tell if it helps.

Monday will be the day I really start to leave the shadow of chemo behind, and Tuesday I see the radiological oncologist. More on this as it transpires.

A better day / Boosting the signal

Better day today -- stronger, less mouth pain, less distress in general. I even did some work.

The skin is peeling off my fingertips and feet. I was warned this was a possible consequence of chemo, so I'm not worried, but it's painful and has made these appendages unusually sensitive to temperature and pressure. Usually, I can plunge my hands into nearly boiling water without a qualm, due to decades of the same. Right now, I am qualming away.

And speaking of qualms and even more disturbing sensations, I have linked to a story over in my other blog that has me channeling my Civil Rights Warrior mother. Please boost the signal, if you feel so inclined.

Thank God for Cream of Wheat

I do, in fact, have opportunistic infections in my mouth and elsewhere. I also now have two mouthwashes and a stronger antifungal powder. They aren't helping much yet, and it's too painful to eat anything that's not utterly soft. A piece of soft roll requires to be soaked in water before I can eat it. See heading for other sources of nutrition.

It is to be hoped that this will abate post haste. Also, boo on no one telling me that I have to be extra-careful rinsing my mouth after using my Advair inhaler, as steroids make this whole thing worse.

What yeast can do to the human body makes me glad I'm not vegan. I plan to kill lots of them (or have them killed on my behalf) and eat them. In the future, when it doesn't hurt so much.

And... They Get Me Again.

About two weeks ago, I got a call from the administrative assistant in the medical oncologist's office. "Your appointment is all set with the radiologist. A week before, just call this number, and the Radiology Library will send you your films. Bring them to your appointment."

So today I called. A rushed voice said, "Radiology!" I explained my request. "Well! You need to send me a letter."

Now, this does make sense. Can't have voices on the phone demanding confidential records. But with a week to get this done? Not good.

"That's not what I was told, and I only have a week to get this done." Was my voice rising? Yes.

"Someone's given you the wrong information." At which point I became inarticulate and hung up.

I have since spoken to the medicaal onc's office again, as well as to Patient and Family Services and Risk Management, and found out the following:

* The Radiology Library person should have offered to email me a request form. It's the job of. Each department to explain their procedures to patients; this was not done well in my case.
* Even with this form, I would still need to contact the surgeon's office to get my "external" films -- the ones I went through Hell to get in July.

In other news, the reason my medication info took so long to make it into the LMR is that my first appointment ar D-F was a consultation, and since many patients only come for that, they wait for the second appointment. In my case, this was with the surgeon, who should have signed something then to start the process, but did not. This is a well known break in the system and will be reviewed at the next QC meeting.

And finally, no one knows who the pharmacist was that I met with, or where or what the list of meds was that she had.

My internal films are being sent to me, and I have arranged to get my external films myself. And I am exhausted.