Hiatus day

Also known as New Year's Eve.

And this is just to reassure my friends and family that, while I didn't love every minute of 2011, it was by no means the worst year of my life. (That would have been 1985. Ask me about it sometime when you have a week or two.) For one thing, I found out all over again how many really nifty people care about me.

I do hope that we can all have a year without major health crises, and there are a few other things I'm hoping against hope for, such as  decent restraint in the United States' electoral politics. But, all in all, I look forward to 2012 without conditions. After all, were it not for miracles of modern science, you wouldn't be reading this, because I'd have no idea yet that I had cancer at all. As it is, I am cancer free, and soon to be treatment free.

HUZZAH! And Happy New Year!

Countdown: Six!

The targeted treatment, or "boost" takes such a short time that positioning the Huge Device takes longer than the treatment. Also, I saw the nurse again today for a few moments, and though my radiation burns -- expecially the one under my arm -- look as though they wanted to grow their own mouths and eat my fingers, I am really doing fine. Things should be much better in a week.

Not much else to report, except that another day is knocked off the Radiation Calendar.

Oh, and the seed/flower catalogs have started to arrive! I am going to bring some in and leave them in the waiting area -- much more cheerful reading than another People or Real Simple magazine. (The latter is so thick with ads of things you can buy to simplify your life that it could serve as the dictionary illustration to define "oxymoron".)

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: Eight!

So, the word is that two weeks from today the area under my breast will be all healed up, and the area under my arm nearly so. Because we are not treating any of those spots any more. Further, we're not going to be treating the new spot long enough to cause any major skin breakdown. And I have enough goop to last through the end of treatment.

"The end of treatment." What a concept!

Today was not a wonderful day, but the lack of wonderfulness had nothing to do with the cancer. As most who know me know all too well, I am clumsy to the point of being a danger to myself and others. And today... well, let's just say that a sudden spurt in the fruit-fly population will come as no surprise, and I'm not sure the situation can be resolved. And all because when I drop things I'm trying to cook with they often bounce off my shoes.

As The Bravest Man Alive has cause to say far, far too often, it's a very good thing my parents didn't name me Grace.

Things I Wish They'd Told Me will be addressed tomorrow.

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

Re-scanning

Today was quite a day.

First, the sales team on my current proposal decided we really couldn't bid on the contract as specified by the RFP. (Financial issues)  Always a relief, even though this one was going fairly smoothly. I spent some time drafting a no-bid letter.

Then, out of the blue, the IT guy for my office calls -- I have to bring in my old laptop TODAY so he can pick it up tomorrow and get the data on it swapped to "my" new laptop, as the warranty on the old one has expired. So, schlep through the Route 1 traffic and back, because I also had to be at the radiology clinic early. Why?

RE-SCAN! This means I am nearly done with the whole-breast radiation and the physicists need to plan out the targeted therapy. I also saw the nurse and the doctor, picked up some different pads and bandages and goop for keeping the radiation burns to a minimum, and waited for more than an hour because the radiology team was backed up. Oh well, it just meant more knitting got done on my last hat.

The doctor and the nurse have no idea why I'm cold. The nurse suggests the anemia; the doctor, a hormonal imbalance. This actually makes some sense, as I was just starting the hormonal part of menopause when all this cancer business began. (Long story, but in essence I went through the physical part of menopause early due to a medical condition; but this left my ovaries intact and functioning, and they are just now starting to conk out.) And also, all my friends who told me they had cold issues are close to my age, or were when they had cancer. I will be asking the PCP about this.

And the cavity where the Lump was removed has really shrunk! The doctor is quite impressed with the surgeon's work. According to everyone, my skin looks "great -- considering..." which is the best it seems I can hope for.

This was a lot more driving than I have done recently, and through some difficult traffic, so I arrived home fairly beat. Fortunately, there's always pizza.

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!

Billing, take 2

Constant readers will recall the issues I had with confusing bills (shoulder surgery?) from Brigham and Women's Hospital.

Well, rejoice and be glad, because now it's the turn of Dana-Farber and the Winchester Hospital Cancer Treatment Center!

I had gotten and paid bills for $20.00 for each of my chemo visits to D-F. "Cool," I thought. "These are only costing me what a co-pay at the health plan would be!" But no. I am now receiving bills AGAIN for each of my chemo visits. Each of these details the actual chemo treatment itself, and depending on what happened at each visit, each is slightly different. For example, the time they had to look for a new vein in three different places and call in a phlebotomist was a lot more expensive than the time the blood draw nurse hit the right one immediately.

And Winchester has billed me for three radiation treatments at three different rates, all occurring on my first visit there -- when I received no treatment at all, just went through the simulation process. I am sure this is yet another issue of the codes not keeping up with the technology.

Bravest is adopting a very lassiez faire attitude to the whole thing. On his recommendation, I am paying everything and assuming that the parties responsible will eventually sort it all out and reimburse us if we are owed anything. After all, B&W just sent us a refund for an over-bill from his thyroid surgery in March of 2010.

Well that would explain a lot.

So, it seems I havea UTI, and a subsidiary sinus infection! The good news is that my kidneys are fine, so I don't need to go to the hospital for intravenous antibiotics.

Expecting to feel better soon!

When it isn't even spring

This is not only a reference to the amazing (and kind of creepy) warm weather we've had this November, but also to the fact that I've been running a low-grade fever for a couple of days. "Low" as in nearly 101. I'm going to the doctor tomorrow morning for the second time in two weeks, and this time I intend to stay there until someone gives me a better diagnosis than "Well, let's see if it's still a problem after you're done with radiation."

This difficult time (I have been trending lower for more than two weeks now) has also brought something else into perspective; that people around me rather expect me to be tough and cheerful, to have a "good attitude", to "bounce back." And I rather expect this of myself -- at least, I don't want to disappoint people. So, I've been trying to work when I wasn't really well enough to work, and trying to do all the chores when I wasn't really well enough to do all the chores. The result has been exhaustion when I was expecting to feel stronger, and a lack of patience with myself and others.

This problem is compounded, in our household, by the fact that Bravest, in dealing with his disability, has lived his life with the idea that there's some sort of moral failing involved in asking for and receiving help. For anything. Mostly, this has served him well. When you ask for help, you put yourself in the hands of the person you have asked to help you. Especially in the case of a sensory disability, this gives the "helper" enormous power over the "helpee".

But, just as I had to learn in my days of poverty how to be a gracious receiver and still retain my independence, this seems to be the time for me and perhaps for Bravest to learn that sometimes you can't be tough. You have to admit that you can't, and ask for help. Which may come up again this weekend, as right now I very much doubt if I can do the grocery shopping without falling over.

Oh, why should I have spring fever, when it isn't even spring...