It is over. I am finished with active cancer treatment and am officially NED — No Evidence of Disease.
I had thought that on my last day of treatment, I’d feel sad when I finished. Like some kind of safety net was dropping out from under me. But not so. As I was driving home, I realized a song was running through my head. When I paid attention to what I was humming in my brain, it was Paul Simon’s *59th Street Bridge Song*.
Slow down, you move too fast.
You got to make the morning last.
Just kicking down the cobble stones.
Looking for fun and feelin' groovy.
Ba da, Ba da, Ba da, Ba da...Feelin' Groovy.
Hello lamp-post,
What cha knowin'?
I've come to watch your flowers growin'.
Ain't cha got no rhymes for me?
Doot-in' doo-doo,
Feelin' groovy.
I've got no deeds to do,
No promises to keep.
I'm dappled and drowsy and ready to sleep.
Let the morning time drop all its petals on me.
Life, I love you,
All is groovy.
I considered this a good omen from my subconscious!
When I got home, I had a pint of Haagen Das Dulce de Leche ice cream for supper. I figured that this auspicious event deserved a little celebration. Then I fell promptly to sleep and missed the whole rest of the evening, as is my wont nowadays.
The next morning I was on my way in to Chapel Hill for yet another in my never-ending series of appointments, and I found myself humming another song in my head. I was surprised to find that it was Bobby McFerrin’s *Don’t Worry, Be Happy*:
Here is a little song I wrote
You might want to sing it note for note
Don't worry be happy
In every life we have some trouble
When you worry you make it double
Don't worry, be happy......
Ain't got no place to lay your head
Somebody came and took your bed
Don't worry, be happy
The land lord say your rent is late
He may have to litigate
Don't worry, be happy
Look at me I am happy
Don't worry, be happy
Here I give you my phone number
When you worry call me
I make you happy
Don't worry, be happy
Ain't got no cash, ain't got no style
Ain't got no girl to make you smile
But don't worry be happy
Cause when you worry
Your face will frown
And that will bring everybody down
So don't worry, be happy (now).....
There is this little song I wrote
I hope you learn it note for note
Like good little children
Don't worry, be happy
Listen to what I say
In your life expect some trouble
But when you worry
You make it double
Don't worry, be happy......
Don't worry don't do it, be happy
Put a smile on your face
Don't bring everybody down like this
Don't worry, it will soon pass
Whatever it is
Don't worry, be happy
Granted, when you really analyze the lyrics, they can be seen as the worst kind of “bright-siding.” Still, I considered this another good omen popping up from my unconscious.
------------------------
Despite the fact that I am now post-rads and post-treatment, the area that they radiated continues to react to the rads. It is getting a bit redder every day, it is beginning to blister, and a scab has formed again along a part of my mastectomy scar. The whole area itches more with each passing day. I also have exit burns on my back, opposite where they did the supraclav radiation. They say that these effects will continue to get worse for about two more weeks, then will start to heal up. Sigh. I’m glad we stopped frying me when we did.
------------------------
My parents are about to leave. They’ve been here three whole months and it is a testimony to our endurance that none of us has killed any of the others! :)
I’ve really enjoyed and appreciated having them here. I know the caretaking that they did for me wasn’t what they expected. I have not been bedridden and feeble. I could do a lot for myself, if necessary, when they arrived. And now that my arm has healed more, I’m doing even more for myself. I also have real hair now, as compared to just a few short sprigs on my head, like when they got here.
But I remember the evening that they got here. I was sitting in my rocker, exhausted beyond words and feeling really overwhelmed with everything that I needed to handle. They weren’t supposed to arrive until the next day. When they pulled in a day early, I thought, “Thank God they’re here.”
Even before I got sick, there were times when the responsibilities I took on in managing a four+ acre property and dogs and cats and a job and life and everything made me feel overwhelmed.
Then this cancer thing hit, and it just swamped my “coping” boat. Property maintenance issues flew out the door. I just barely managed to keep myself and my menagerie fed. The house was cleaned on an even less regular schedule. And there was clutter — most of it cancer-related — everywhere in quantities and in places that I don’t usually allow to build up like that. It seemed that I just couldn’t keep up. Things that were important to follow through on would get buried in the piles. (Like statements from my bank, bills, denials of payment from my insurance company….) It was just awful. Still is, to some extent.
But when my folks came, one big chunk of that “awful” got handled for me. When I couldn’t do things for myself, like drive, they did it for me. My dad has done a lot of household and property upkeep work and outdoors work for me, after his role as chauffeur ended. And he runs the vacuum in the house, cuts and splits firewood, hauls in firewood, and has kept my wood stove roaring almost night and day for three months. My mom usually cooks supper and does the dishes and does laundry.
They both act as doorkeepers for my animals (let the dogs out, let the dogs in, let the dogs out, let the dogs in, see if the cat wants to scurry past your feet and go outside when the door is open, see if the cat wants to brave scurrying past your feet to come inside again…) and my mom does a lot of the dog and cat feeding. Foster, one of my dogs, has developed a real fondness for my dad. (At least, he had become fond of my dad until Dad was cutting down a dead tree and almost dropped it on top of Foster! Now when Foster hears my dad get out the chainsaw, he goes and lays down on the front porch!)
Their taking on these mundane tasks that keep my life running freed me to just be a cancer patient. Go to my appointments. Do my exercises. Do my lymph massage. Sleep. Be tired. Try to find my bank statements and balance my checkbook. Sleep some more. Go to more appointments….
Given my folks’ age and given my health status, this may be one of the last times we’ll ever have to spend this much time together. It has been wonderful having them here. Not just because of what they did for me, but because I really enjoyed having their company. It’s going to be a big adjustment to be alone again out here.
-----------------------
I won’t have much of a chance to fully appreciate my alone-ness in the coming week, though. My grievance hearing at the University to contest my layoff is on Thursday. I’ve been busily preparing for it. It’s a distasteful task, but it has to be done. I allow myself to entertain hopes that I’ll win and be reinstated in my job, but the truth is that grievants in such situations almost never win.
Making the effort, though, preserves my legal rights. And that may become important. There is a very good case to be made that my health status was a factor in their deciding to eliminate my position “due to budget cuts.” At least, that’s what a couple of attorneys have told me. We’ll see where this goes….
The task of doing this is made more distasteful by the perfidy of people you thought you could count on to tell the truth. Turns out, I was a poor judge of character.
One of the people who works for the CIDD (the organization that goose-stepped in and took over TEACCH, where I worked), is a woman I'll call Nita. She has made a frank claim on her Christian faith as something that has sustained her in the trying times that erupted when the CIDD staged its hostile take-over. And I believed her. I believed she was a simple soul, a devout Christian, and incapable of out-and-out lying.
She has also, on two occasions, been engaged in conversations with me in which she has said some very, very revealing things about how the CIDD reached its decision to lay me off. After those conversations, I immediately made notes on what she’d said, because I realized the importance of what she had revealed to me. And right after that, I shared with a few others my amazement at what she’d said.
I put this information into my grievance document packet, and today I found out that the CIDD administrators who are her superiors violated the confidentiality of the grievance process and gave a copy of that information to her. She has written “Not true” beside almost every paragraph I wrote and signed her initials. That “Not true” document is now a part of the other side’s evidence against me.
I realize that my life is not worth a plugged nickel now, so I will swear on something far more valuable to me: my children’s lives. What this woman said to me is accurately reflected in what I wrote. She is lying through her teeth.
What is most disappointing is that while we were on opposite sides in the battle for TEACCH, I really did like this woman and I believed that she had a good and sincere heart, that she was a committed Christian and was incapable of lying. It might pain her to confess that she said what she did. She might (probably would) break down and cry if put in a position where she was forced to do so, because in retrospect she realizes that what she said puts her at risk for being fired “because of the budget,” herself. (The CIDD has some pretty strict “loyalty” requirements, so she has reason to be afraid.) But I didn’t think that she would be capable of lying.
I’ve found myself very sad and angry this afternoon, when I saw what she’d done. I had thought more highly of her than this. I can’t figure out which Bible verse I would like to send to her. The one where Jesus says, “Insofar as you have done it to the least of these, my brethren, you have done it unto me” is the one that keeps popping to mind. I suppose the one about bearing false witness would also apply.
It’s disappointing times, indeed, when you can’t even count on “Christians” to live up to the name and do the right thing. I mean, I know that not everyone who claims the label is anywhere close to living up to the ideals of that faith. But I had pegged Nita as one of the good ones.... Other co-workers kept telling me I was wrong. I kept insisting I was right.
Looks like I was wrong, after all.
-------------------
Someone asked me for a hair report, so here it is: I have some! In fact, I have enough that my head is now thoroughly covered and when I wear my hat, I get very obvious creases in my hair. I look kinda butch, and it’s all silvery and baby soft.
When you lose your hair, in chemo, you don’t just lose it on your head. You lose it alllllll over your body. It’s coming in, now, in all those places, too. I almost have a full set of eyebrows again. The hair on my legs is once again a pain to have to shave…. The whiskers on my chin are springing back into life. (sigh) There weren’t a whole lot of perks to being on chemo, but not having to shave very often was definitely one of them!
-------------------
And on the lymphedema watch front: I’m doing well. I wear my compression sleeve every day, do manual lymph massage most days (but forget on some). My arm appears to be normal-sized, with no accumulated lymphatic fluid. It’s getting stronger, too. I can lift slightly heavier things with that arm, now.
I’ll start the University’s Get Real & Heal program for breast cancer patients who have finished treatment. I understand that in that program they will work with me on exercises to continue to strengthen that arm, since new studies show that mild to moderate exercise of the at-risk limb actually helps to prevent the development of lymphedema.
Meanwhile, I continue to luxuriate in the manual lymph massages delivered by my lymph nymph at Balanced Physical Therapy, Val Collins. Val has been a wonder. She was there for me when I was pre-surgery and worried sick about developing lymphedema. She was there for me immediately after surgery to help me get the post-surgical swelling under control and reassure me that this was not necessarily lymphedema yet. She was on top of things when I got my cording problem (though Mean Val, who tried to break up those cords, was not very much fun!), and she reassured me that this, too, was not likely to be permanent and had no known relationship to the development of true lymphedema. She has massaged away through radiation to keep fluid from building up while my body was getting fried.
And while she works, we talk. Like a bartender, she’s an informal therapist, in addition to being a physical therapist and lymph specialist. She’s also been a great educator. In fact, I’ve bought the textbook on lymphedema management that she used when she was in school, just so I can learn more.
I just do what Val says. Or try to do it. Val has been calling all the shots, and she’s been calling them flawlessly so far. I’m doing well, and I’m sure it’s because she’s helped me do as many of the right things as possible to maximize my chances for a good outcome with all of this.
------------------
I went this week to talk to a pulmonary specialist about my worries about my lungs, given the hit of radiation they’ve taken. She had me get a chest x-ray to see how much damage has been done, and she had me do a couple of breathing tests. Turns out, we have baseline comparisons for both, so we can really compare “before” and “after.” I had x-rays of my chest back in August, when I was neutropenic and in the hospital. They were checking for pneumonia, then. I did the breathing tests in 2007, when my GP sent me for an evaluation due to my shortness of breath problems.
Today, my lungs look about the same as they did in August. We don’t know if the radiation damage will show up later on x-rays, rather than immediately. But for now, my lungs don’t look as if they’ve sustained much damage.
As for the breathing tests, one of them is almost the same as it was in ’07. The other is about 10% lower, but still within the range of “normal” for that test. Again, we don’t know whether these values will remain steady or change as I get further out from treatment and long-term effects become manifest. But for now, I appear to be in good shape.
------------------
So that’s it, folks. I talk to my medical oncologist again next week and move formally into the “surveillance” phase of my cancer treatment. I’m sure that at some point I’ll begin to feel the typical post-treatment let-down of the newly released patient. But that hasn’t happened yet. Right now, I’m just feelin’ groovy
Print this article
No comments:
Post a Comment