Saturday, February 27, 2010

The Hollywood Sleeve

Lymphedema Part II: Treatment

There are two steps to reversing lymphedma in its early stages: compression and massage.

As for compression, the theory is simple enough: apply firm resistance to the affected area--in my case at first, an entire limb--and as your muscles expand and contract, they squeeze the lymph against the resistance and push it back up the lymphatic vessels.

So I got this sleeve on, you see, and a really tight glove, and every move I make against these garments is squeezing the lymph out of my arm.

I don't find the garments uncomfortable. I can get them on easily. They're not stylish, of course, but that's because I haven't gotten my hands on the catalog to order myself some leopard print versions. The only annoyance of them is that a day full of ordinary motion really tires my arm. The first few days I wore these garments, I had severe muscle cramping in my arm and hand just from cooking dinner. Stands to reason: there is resistance to every move I make now.

This also means my handwriting has gone to pot. Not that it had far to go. . .

As for massage: The lymphatic vessels are punctuated by one-way valves, which create a kind of suction. A few times a day, I press on the lymph nodes in my neck, right at my collar bone, to clear them out. Once they're empty, they create a suction in the vessels they're connected to. I help my body by gently rubbing my arm from the elbow up to the shoulder several times. This empties those vessels. Then I rub from the wrist up to the shoulder. Then from the fingers on up.

I was doubtful this actually accomplished anything. But I did it often because I'm pretty interested in reversing the condition. Then I took a plane ride down to Florida and felt my arm fill up as the plane descended to sea level. I started emptying and massaging like crazy and after a few minutes of it, felt a decided relief. So now I do it often because I know it works.

And the results? My right arm is now noticeably smaller than my left! I'm not sure what we're squeezing out anymore, but I think it's more than just lymph. More details about results are coming in Part III. But as I've said, the condition is mostly reversed and my arm is looking great.

So great, in fact, that I'm surprised Hollywood has not discovered compression sleeves. These actresses could be squeezing a good 100 - 200 mL of fluid out of their arms right before going onto the red carpet.

Friday, February 26, 2010

Lymphedema At Last

I'm thinking back to my second consult with Dr. Mayfield, the one we had two days before my surgery, to the very moment when I said, "Wait. What's that you just said?"

No, this wasn't in response to his saying, "You are thin."

He had just said, "So what if you have a swollen arm for the rest of your life if you're using it to cheer at your child's graduation?"

This was in his Moment of Truth speech that I suspect he'd thought and prayed long and hard about delivering. The speech that probably got some air time during his residency, because surgeons have to give it often. The speech that, roughly translated into blunt language would sound like this: "The treatment I'm advising will suck, but dying sucks worse."

Hence the phrase "swollen arm" used with the other phrase, "So what?"

But here I am. I went through with the radical surgery that turned out to be less-radical than expected. I did the chemo. I did the radiation. My hair is growing back. My energy has returned. To gauge by all outside appearances and behaviors, I am no longer a cancer patient.

So it's no longer "so what?" if I have a swollen arm. I do, in fact, have a swollen arm and hand, this is not easily disguised and my attitude towards it is pretty straightforward: Lymphedema? Really?

So today's post will be an answer to the question on everyone's mind: What is lymphedema, anyway?

The lymphatic system is the one we did not learn about in Mrs. Saragoosa's seventh grade biology class, though she did very thoroughly cover all the others. I still know the term--check this out!--"Superior vena cava."

Nor did we learn about it in Mrs. Griffin's biology class Freshman year, though we did dissect a frog. (That was also the year Eric Lichtenberger and Sean Nolan teamed up for their science fair project and shot ants up in a model rocket.)

Nor did we learn about it in the same Mrs. Giffin's Human Anatomy course Sophomore year, though I did hang onto the enduring term, "canal of schlem."

That's right. We had time to learn about the "canal of schlem," but did not have time to learn anything more than the term "lymph node," and the fact that it was part of "the lymphatic system." I'm not being glib about this time issue. Go ahead. Take a look at a simple wikipedia entry on the lymphatic system. Pretty complicated!

The short version is this: Our lymphatic system runs roughly parallel to our circulatory system. It takes fluids to and from tissues and organs. And it's also a big player in our immune system such that when cancer cells form in some tissue, and start breaking off to hit the lymphatic highway and drive to a new organ, the lymph nodes act as little road blocks, trapping those cancer cells. The nodes will often destroy them. But sometimes they can't, or they get overwhelmed by incoming cells, and the nodes become tumorous themselves.

All of my brave little lymph nodes in my right armpit, shoulder and collar bone area that were within the surgeon's reach--including the one that really should have been out of reach--were removed during my surgery.

The radiation, which centered on my chest wall and up into my shoulder, damaged the delicate lymphatic capillaries, and whatever other lymph nodes that remained in the area. We have no way of knowing how much damage was done, or whether my body can or will repair it. We just know that my system stopped draining my right arm as it had been doing.

Lymph is getting to the tissue in my arm, but my body is not draining it out as it should. Left untreated, the whole limb would swell. And swell. And swell. I won't link to photos of this because the worst case scenarios are pretty grim.

Still left untreated, the lymph--a protein liquid--would simply harden. The skin would lose elasticity. The limb would remain permanently swollen.

It's more than a just cosmetic affliction, too. Even mild cases can cause significant pain in the affected joints. My swelling is very slight, and at this point, only remains in my first two fingers and first knuckle. But it's tight, all right. Hard to grasp things with fine motor control, too.

It's also worth noting that lymphedema is not just a breast cancer treatment complication. Sometimes people get it because of a genetic trigger. Or trauma to a limb. It's most common in arms and legs, but it can also afflict parts of the torso.

I think, if I had to choose, I'd want it in an arm. See how nicely that turned out?

I am nowhere near the worst case scenario. I noticed mine while it was just a wee bit past a "pre-clinical" level--meaning it was barely detectable with the naked eye. Now, it is mostly reversed, and I'm still hopeful that we can get rid of this last little bit in my hand. Thank you for your prayers for this.

Tomorrow's post: Treatment.

Alternately Titled: What to Say to People Who Ask Why You're Wearing Pantyhose On Your Arm.

Thursday, February 25, 2010

Breast Cancer Survivor Gear Thursday

From now 'till the end of this blog, I'd like to spend Thursdays exploring the wonderful world of pink products. We know all about the key chains and water bottles and pins. What else is out there?

I have a few ideas already. But please, do your part: send me links to any Pink/breast cancer-related product that you find amusing or bizarre or funny or cool.

Big thanks to Julie B for sending me this one. It made me laugh. And laughter, after all, is a primo piece of survival gear.


Oh--and if you can think of a better acronym for this feature, do pass it on.

Tuesday, February 23, 2010

B, G and J Day: Behaving Badly

B:

Bryan has been checking Craig's List every evening and weekend morning for months, looking for bricks. If ever the phrase "Why buy new when used will do?" applies, it applies to bricks that will be used to make garden pathways.

Sunday morning--BING!--a "load" of bricks for $65. How much is a "load"? Four trips with our Explorer, that's how many. Two trips were that Sunday, and he made another both last night and tonight. The owner is moving, and these are bricks she hauled up from Pueblo when she came upon them as left-overs from some guy's new fence.

(If it's made out of bricks, do we still call it a fence?)

There were a few other pavers in the pile, too. Bryan took 'em.

Tonight he arrived home and pronounced the job finished. "Except for this one square paver. It was frozen to the ground. I couldn't pull it up. I couldn't kick it loose. I tried hammering a piece of wood against it with another brick--nothing!"

I kidded him, "And here I thought you were a man of perseverance."

A naughty grin slipped out. "Well," --uh-oh-- "I even tried warm water on it."

Hmm. As in. . .he knocked on this person's door and asked them for a cup of hot water?

He saw that I was puzzled and said, "It wasn't exactly warm water."

Pause.

Amy: "UGH! I'm putting that in the blog!"



G:

This morning at breakfast, Gemma told me how she spent a little time last night looking out her bedroom window, counting the airplane lights that flew by.

How pleasant. I told her that I used to do that when I was a little girl, too.

Then she said, "Yeah. And I use my binoculars to look into people's houses and see what they're watching on television."


J:

When we grocery shopped last week, each child started the circuit with a small bag of gummy worms for them to enjoy. You know that bribe. It works well for us, too.

It's Joshua's modus operandi to eat his treat one after another. Gemma likes to make hers last and last. This is why, when we got to the last aisle, she still had three gummy worms left and he'd been eyeing them since four aisles ago.

I turned back to the cart with a handful of yogurt to find Joshua kind of on top of her in the little bench seat they shared. And she was kind of. . .groaning, but it wasn't loud. It was muffled and annoyed.

"Josh, sit down," I told him.

He did. With a great big smile and a glistening, red gummy worm on his finger. Just when I realized what he'd done--that is, when I realized that he'd dug this worm out of his sister's mouth--he stuck it into his own.

I was laughing to hard to tell him that this was disgusting. As for Gemma, she sat there, a bit stunned, trying to calculate whether this kind of thing is allowed. On the one hand, she'd never heard an express prohibition against stealing food out of another person's mouth.

On the other hand, it was her gummy worm and she had been sucking on it!

On the other hand, her mother was now bent over from the laughter.

On the other hand, it had been in her mouth. . .

Hair-ful

It's growing back.

I've told you Joshua's observations. First I felt "poky," then "like a caterpillar," then "like a cat." I got home from my family reunion weekend last Monday and he gave me a good pet. I asked him, "What do I feel like now, Josh?"

He said, "Like Mommy."

I know that's really sweet. Believe me, for the first twenty minutes, my heart gushed. But then. Well. Come on, Josh. When has your Mommy's hair ever felt like this? Get real.
(Oh, take it easy! Of course I didn't say this to him!)

It is about half an inch long now. Seems to be as thick as before. I have a solid patch of white hairs right above my forehead, slightly to the left. They were there years ago, but were easy to hide.

When Dr. Markus saw me and remarked on the new growth, I pointed to these white hairs and said, "Do I have you to blame for these?"

Was that mean? Making him think it was a chemo thing? Meh. He didn't seem to care.

He did say, "I think it's very distinctive!"

Oh?

"Yes! Are you a reader of science fiction fantasy?"

What? Do I look like a 15 year old boy? Wait. Don't answer that. . .

"The very powerful are often marked by a streak of white hair. You would be, well, like a sorceress."

Moment of silence. I'm fairly certain I'd never been compared to a sorceress before. What does one say to this? What did I say?

I shrugged and whispered, "Behold!"

He then said, "I've revealed what a nerd I am." I wanted to tell him, "I think being a nerd is very distinctive!"

And one of these days, I will tell him, "I'm glad you are a nerd. I'm a nerd. I'm working hard to turn my children into nerds. This world is a better place because of nerds!"

But his comments do make me think of Rogue from the X-Men. Check out her streak of white hair:


I'd often thought that if I had that much of a concentration, I'd go for it. But my clump makes a streak about a quarter of that size on just one side. Before I lost my hair, I colored just this streak.


Then, just this weekend as I watched the Olympics, I saw a Pantene commercial on which the model--a hair model!--was a dark brunette with a long streak of white hair.


And it wasn't even for the old-lady version of their formula. So maybe, friends. Just maybe. . .


Half an inch seems to be the length that people interpret to be a chosen hairstyle, and not a side effect. I was wearing a hat on the airplane and a woman remarked, "Fantastic hat! Where did you get it?"
I told her and then added, "I saw it, liked it, was bald at the time, so I bought it."


She looked surprised and said, "I was bald once, too!" and we high-fived. (Note to self: Is there a secret Survivor's handshake I should know about for these moments? Google it.)


My point is that she didn't have the "Oh, you've got cancer!" look that I've learned to read pretty quickly.


A 16-17ish old girl in the Commissary stopped me to tell me how "cool" my hairstyle was and how "awesome" it was that I "went for it."


So, I inspired one of our nation's youth this week. What have you done, slackers?


I also have all of my eyebrows back. That was an awkward few weeks, waiting for them to come in. When you have just stubble up there, they look like two smudges, like hobo make-up mis-applied.


And stubbly eyelashes! They looked so icky for a while. But they are back now, too.


All further proof that we are finished with the hard treatment and that my body is getting on with the show.


Speaking of which, a photo below, taken at our reunion. I'd started entering the game room by sliding in front of the entrance a la Tom Cruise in Risky Business (a movie I've never seen, but who hasn't seen that scene?)


Mom, ever the faithful photo-historian, insisted that I do it once for the camera.


Here I am. Take those old records off the shelf. . .






Monday, February 22, 2010

Current Standings

I'm pretty excited about the coming 6 weeks of blogging. I've thought of some new features and I've been storing up some topics over the weeks of my web silence.

But first, the medical details.

1. I feel great. I don't remember if this is how great I felt physically before I was diagnosed. But now. Man. I feel like I am flying. I have energy that seems boundless. I am functioning fully on a mere 8 hours of sleep, with no thought of wanting a nap. (For months there, I was getting a good 10-11 hours at night and could have napped at any given moment.)

It's just terrific to be well.

2. My skin has healed beautifully following the radiation. There's actually not much of a scar left from the breast removal because they burned it off. So I got that going for me.

I do have a deep tan, and the radiation field made a rectangle on my upper right torso. So certain evening wear would be ill-advised for a while. Dang. Just when I was thinking about showing some cleavage.

Heh heh heh. . . Breast cancer humor. . .

3. The lymphedema has reversed a great deal. Thank you for your prayers for this. More lymphedema details to come, as I've been promising. . . But it's not a problem that will ever go away completely, so I feel like I have time to get around to it.

"And you've sure been usin' it!" said the hippo.

4. As for my remaining treatment, I will still get Herceptin every 3rd week until August.

I started taking Tomaxicin this week. More on that drug later. I will take it every day for 5 years.

I'll have an EKG every 3 months until I'm done with Herceptin.

I'll see Dr. Science every 6 weeks or so. In a few months, if he hasn't had reason to do so by then, he'll run a scan to check for glowing masses of cancer.

But I'm utterly confident there won't be any to find. It's not that I'm just hopeful. Or wishful. I'm really convinced that this cancer is gone, or will be by the time my treatment is completed. I might be wrong. If I am, I will be the most shocked of all.

After the Herceptin is finished in August, I'll go 4 more years with the Tomaxicin and sparse visits to Dr. Science. And at the 5 year mark, he'll pronounce me "cured."

But I'm living like that pronouncement has already been made.

5. I'll tell you what could much all this up: if my remaining breast cells turned cancerous. If even just one of them mutated, that'd be it. I would be right back at the starting line again.

There's only one way to be certain it doesn't happen. That surgery is scheduled for 25 March. With Mayfield, of course. Plenty more to write about relating to this point.

6. Bryan is doing so well, too. It's transition time for him in terms of his career, but he has some pretty good prospects for jobs to transition into. More on that later.

7. And the children! I have lots of B, G and J stories to share.

It's great to be back, and it's great to know you all are with me.

Sunday, February 21, 2010

A Blogger Promise + Prayer Request

I've been behaving badly.

While in the midst of a trial, I was quick to share the details. I reflected, I pondered, I noted, I reported, and you all humored me.

Now that we are near the end of this race and our days are full of sweetness, I've carried on my merry way. Oh fickle Blogger that I am!! How could I treat you so?

So here's my promise: I will post every day between now and 31 March. Not only do I have some medical news and updates to share, not only do I have another major surgery scheduled for 25 March, but I now have a life post-big-treatment. I'll write about it.

Whether you find it interesting--this regular life of mine--is another matter entirely. If you don't, that's kind of your problem, though. Right? I mean, I'm just happy to have one. . .

As for the prayer request:

You remember my neighbor, Stefanie, the cancer survivor who moved in this summer. She's been suffering for months from side effects/damage from her treatment and Monday morning, she'll undergo major, major surgery. They expect a 6 week recovery, the first week of which must be spent in the hospital. And the procedure itself is very complicated--I almost want to call it "creative" as they'll be redirecting her intestines.

Please pray for her, her doctors, her children (3 daughters ages 5, 9 and 11) and her husband, who is active duty Army away at a mandatory school right now. Pray for wisdom and skill amidst the doctors, peace over all, no complications and, of course, complete healing.