Radiology follow-up

Today was the radiology follow-up. And the radiologist doesn't want to see me for a whole year! My skin looks great, I have to watch out for sunburn, take it easy with the left arm, and let her know if anything changes. "Anything" means a sudden increase in breast density, a sudden decrease in breast size (as if!), pain in the chest wall, constant coughing (and how I'm supposed to tell this apart from my regular constant coughing, I don't know), or, God forbid, a heart attack.

Unfortunately, she also told me that all my doctors at Dana-Farber were notified that my treatment was complete nearly a month ago, and none of them have contacted me about follow-up. So I made some calls. I have one appointment set up with the surgeon at 7:30 AM (EEK) on March 20th, and the oncologist's admin should call me back soon.

Which had better be tomorrow, or the patient advocate at D-F will be hearing from me again.

Oh yes -- new picture, this time with actual hair. It's coming in silver on the sides and dark on top, but the lighting in my study doesn't show the dark hair well. I went without a hat to church yesterday, and most everyone was flattering.

And I think it's true that, as I've noticed when looking at pictures in a Mennonite friend's high school yearbook, or the faces of nuns, or even the faces of observant Muslim women -- when the eye is not distracted by hair, you can really see the person in the face. Not that my face is particularly lovely, but it doesn't need to be.

Oww Again

I was back at the clinic today, because the skin under my arm has turned into a red and weeping ooze that sticks to everything, including me, making crusts that I tear off whenever I move. Which made me realize, once again, that health care professionals are different from other folks.

"It looks great!" said the nurse and the doctor, as they scanned the four-inch-square area of sticky, shiny, redness. "You're keeping it really clean." The greenish gop on the pad I'd been wearing? Totally normal. The white, pimply dots? New skin cells trying to grow.

I am to keep it as moist as possible for the next week. This includes wearing a bra to bed to hold all the various layers of "product" in place. And I have chucks to lie on, so I don't totally wreck the sheet and mattress pad. It should be much improved by next week, when I am to go again.

I have faith, because the rest of me is, in fact, much improved. But it does hurt, and the ointment and pads don't really help all that much.

Which brings a somber thought. The radiation burns and the weariness I am dealing with are as less than nothing compared to what happened to the people of Hiroshima and Nagasaki who survived the initial blast. Many sides to that thought...

ONE!

Today, as I drove home from my last radiation treatment, the sky was a bright, BRIGHT Pepto-Bismol pink and Kool-Aid purple, the kind of garish display only the Almighty can get away with. And I was glad to have that be the only kind of pink in my life.

Previously, I lay for the last time under the blank gaze of the Varian Clinac machine, got a nice certificate from the technicians, and was showered with confetti. I brought them goodies from Whole Foods, and a smaller selection to share with my fellow zappees. I have follow-up appointments, but no more treatments.

No.More.Treatments.

And earlier this morning, I saw a surgeon at Brigham and Women's. I do not need surgery. It turns out that very few of these small hernias give trouble. I've probably had it for some time and not noticed it. I can do anything, eat anything, go anywhere... and come back if it gives me trouble.

We celebrated with hot chocolate and rum.

I don't know what my oncologist wants for a follow-up regimen, but that's also just a follow-up. I am not closing this blog yet, as I want to get through a couple of months while the billing settles down, but...

No.   More.   Treatments.      No.    More.    Surgery.

It's hard to describe the relief. I feel as if vast amounts of time have been returned to me, not to mention spring, summer, fall, and winter.

(For those who asked, I have no follow-up chemo. That's for you folks with hormonally responsive tumors. I got the brutal ride up front; alas, you get the long slog of less difficult but still, not trouble-free daily medication.)

Countdown: Five and Four!

I didn't post yesterday because of a slight contretemps.

Yesterday morning, as I was performing my ablutions, I noticed a small, puffy, blobby thing just within the wall of my navel. Some mad scrambling was required to 1) book an appointment with the Urgent Care people for my health plan, since it was a holiday, and 2) re-schedule the zapping so I could do both things.

The result, confirmed today by my PCP: I have a small umbilical hernia. So much for "no health crises in 2012". It will require surgical repair, so I am seeing a surgeon on Friday. Turns out that the small ones are more dangerous than the large ones -- the large ones can usually be manipulated back where they belong and the abdominal wall just closes up, but the small ones are in danger of strangulation, which is just as nasty as it sounds.

Thank God my mother, who was a nurse, told me about all this stuff.

I must admit that initially, discovering the hernia really, really distressed me. This is because the way my mother's progression towards death began was with abdominal surgery to remove an impaction; in the process and unbeknownst to them, the surgeons removed a very small tumor. That tumor turned out to be the "master tumor" that was inhibiting the growth of a whole slew of other tiny tumors outside her bowel, caused by a bout of ulcerative colitus when she was a teenager.

I don't have any of that, and this surgery is most likely a minor day surgery. But for a few moments there the boat of my soul was adrift, as the ancient writers have it.

However, those moments are past. The good news is that the doctors agree the surgery can wait until I am done with the zaps, so at least one problem will be resolved before the next commences.

The zap yesterday went forward without incident. The zap today was more complex. For some reason, there were issues getting the machine to understand that I was placed properly, and then they had to take the weekly positioning pictures, so I spent about 20 minutes on the table and kept four people waiting behind me. I do hope the last three are less interesting.

I've had quite a bit of peeling under the arm, but it looks a bit better -- lots of new skin.

And tomorrow I am actually going to try and go into work and work a half-day!

Countdown: Seven! -- Things I Wish They'd Told Me

(Please note the updated hair picture. I figured the Dome was worth documenting once.)

• The goop you have to slather on your breasts will play merry hell with your clothing. Wear your oldest, softest, saggiest undergarments, and be prepared to throw them away when it's all done.
• If the goop don't get your clothing, the B.O. will. Tom's of Maine unscented smells funny in its own right (hops and rosemary, rather like soup), and is remarkably ineffective.
• Don't go swimming. I didn't do this, but I had to figure out not to do it myself.
• When they say you will "get tired", they mean you will battle through waves of exhaustion. This is different from merely being sleepy. The waves can be battled through, though!
• Hot showers are a bad idea. Try lukewarm. I was told this eventually, after my skin was all broken down.

There may be more later. We'll see.

In more cheerful news, my husband and I met 21 years ago today! Which I guess is more of a "Today in History" entry than "News," but it still seems like news to us. :)

Countdown: 9!

I said this entry would be Things I Wish They'd Told Me, but that's going to have to be postponed for a day or two. Because other stuff happened today -- good stuff!

First, though, I am sorry to relate that the clinic where I'm being radiated changed my schedule and somehow didn't tell me. So the schedule I'd been handed said "3:10 PM", but they had me scheduled for 3:20. Which is fine. It just means I was never late. On the other hand, someone should have told me. And this is especially true because when I found out my schedule was changed and was given a new one, it had me all over the place for these last two weeks -- 3:20, 3:10, one day even at 3:00!

So, naturally, I asked what the [REDACTED] was going on and why I hadn't been told, and no one knew. No one knew who had changed the schedule, no one knew why I hadn't been asked if it was convenient or informed of the change, etc. (Don't worry, that [REDACTED] isn't covering up any profanity.)

So today I asked to speak with an administrator, and lo, the head of the clinic was covering phones (it being a holiday week) and she has promised to get to the bottom of things, not because anyone needs to be disciplined, but because communicating changes to people who are going through a lot already is one thing a clinic of this type should do exceedingly well.

AND THEN. After my treatment (which occurred on time), they took films of the new treatment positions! There will be three of them -- one to the left, one to the right, and one over my left shoulder. This "field" approach is necessary because the tumor was almost at my chest wall, and they need to radiate the site without blasting my heart. The aperture through which the radiation will pass is much, much smaller. HOORAY!

It's really going to end on time, folks.

Countdown: 10!

After today (yesterday, as I write this), there are only nine treatments to go! Time to take stock of how I'm doing.

• The skin under the breast is tender, raw in places, and starting to itch. This is being eased, though not eliminated by wearing a thin, honeycomb gauze called Cuticerin, which I impregnate with a thinner version of Vaseline (called Aquaphor), and then cover, first with non-stick gauze pads, then with a large, thick pad, and then with a bra. It's rather messy and uncomfortable, but it does help.
• The skin under my arm is ready to secede from the Union, leave the planet, and join the Klingons. It's red, angry, sore, and getting worse by the minute, and there's very little to be done. Armpits naturally rub against stuff including the other side of themselves, and that's that. My various bulges and blobs don't help the situation. But people who have slender bodies and small breasts have their own issues with radiation, so I am not repining.
• The weariness is here, but I am dealing with it. Pushing through it as I can, and sleeping when I must. For example, on Christmas Eve I finished the last hat of my Great Hat Project (hats for all the Sunday School children, which is only eight, but the girl's hats were complicated), wrapped them all, went to church, made dinner, and then went over to my son's house to set up presents for the grandbaby. I was reeling with weariness through most of this, but it all got done.
• Hair is growing pretty fast now, and as far as I can tell is coming back exactly as it went. I can't tell if it is going to be more curly yet.

Wednesday, I will start the targeted portion of the treatment. The radiologist tells me that because the tumor was deep, nearly against the chest wall, they may still have to use a "field" approach to treatment, which means some continuing damage to already treated areas, but there's only eight days of it and at this point that's a mere bagatelle.

Countdown 9: More Stuff I Wish They'd Told Me

The Cold

At church yesterday, four or five of the ladies of the congregation who have also gone through various types of cancer treatments were talking with me about side effects and this and that. Referring to radiation, one of them said, "And I was always cold." And all of them nodded.

Ah, yes. The cold. It's like a live thing. I can feel objectively that I am warm; my hands and feet are warm, my skin reports warmth. But the cold still strikes. It makes the non-hair on my body stand on end, makes my legs twitch, makes me shiver. It's like a wind blowing where there is no real wind. Covers comfort, but do not eliminate it.

My mother spoke of this when she was being treated at the Gamma Knife Center at the Boston Floating Hospital, in a last-ditch attempt to shrink the biggest tumor.

Ah well, at least I know this isn't unique. And I also know there's no point in turning up the heat.

And more billing... / Other news

I have yet to contact the billing people for the Radiology clinic (problem for next week), due to an outbreak of bills from Dana-Farber. These were bills for bills that we had already paid, so today after getting home from the rays I called the Magic Billing Number with the bank account open on the computer in front of me.

Turns out that when you pay by credit card or by letting D-F directly siphon money out of your bank account (as if THAT will ever happen!), all is well. But if you or your bank sends them a paper check, it may take several weeks between the time the check clears your bank account and they get around to posting the payment in their internal accounting system. They are "several weeks behind," to quote my source.

In the meantime, their billing system keeps spewing out bills and threatening patients with collection actions, and maybe even referring them to collection agencies. FAIL, as the kids say. The fact that you laid off too many people in accounting does not give you the right to screw up my credit rating. You have been paid; cease the threats, or you will be PWNED. (Another internet-ism.)

Seriously, I have a lawyer friend who takes just such cases pro bono and pursues them with great gusto and persistance. And if they mess with us much more, I will be calling him in.

Anyway, our account has been annotated with the check numbers and we are not to send any more payments for these particular bills as that would only make them have to generate a credit and lead to more work for them.

In other news, I am definitely feeling and seeing peachfuzz. To my great joy, it seems to be coming in dark on top and white at the sides, so I may be getting my old hair back!

I am also switching to a concoction called Jean's Cream, which has aloe vera and Vitamin E and isn't made of motor oil and parabens. I am already finding an improvement.

Last treatment is January 6

For those keeping track of such things, that's the Feast of the Epiphany, aka Three Kings Day or Little Christmas. Which all seems appropriate somehow.

I am starting to have some fatigue and skin issues, for which I get advice from every quarter. The whole situation rather reminds me of the issues I had breastfeeding, lo these many years ago. There were about six different nurses at the hospital where I was immured for a whole week, each of whom had a different recipe for dealing with my bloated and cracking mammaries. This being Springfield, MA, there was no one who specialized in such things, and naturally neither the OB doctor (who only cared about me from the waist down) or the pediatrician (who didn't care what the baby ate as long as he gained) had anything to say at all.

Turns out the nurse who recommended the heat lamp was the right lady for me; I am now in search of her equivalent.

On the good side, I am really enjoying my current proposal. The combination of enough energy to really get the work done and a good proposal team is making this one a very smooth process... so far. I just hope I can keep up with things as time passes -- I may have to hand this off to someone else.

Tomorrow I go into a frenzy of on-line shopping!

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.

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.)