Monday, March 15, 2010

Lymphedema Post

What amazes me is the lack of lymphedema talk. Or maybe it's just me.
But even here, in Blogger, lymphedema has that little red sqwiggly line underneath it like it's misspelled. Think about that. If you typed in "cancer" and the little red sqwiggly line popped up like you'd made the word up entirely, wouldn't you feel a little weird? Like maybe this thing that is affecting your life so much is somehow unknown to other people? Regular people don't even know what it is, and yet, if you've had cancer, you're probably dealing with it every single day. I get emails all the time asking me if I have any advice on how to deal with it, or if I know anyone who does. It is, without a doubt, the one thing that I took from having cancer that I still have to deal with day in and day out. The pain or discomfort from it is consistent and almost daily. Lymphedema of the groin is right up there with bamboo shoots under the finger nails if you ask me, although I can't really confirm that one from personal experience. Just trust me, ok? It hurts. Like a lot. I'm sure no one wants to talk about this, but just give it a thought for a moment: major swelling of your groin. Ew. Lymphedema is the one thing that I have to be most careful with in my regular life.

After I was found NED, like most people who come into remission or NED status, the doctor sort of told me, "Good job. Now go back to your life and enjoy it and when the cancer comes back, we'll deal with it." If you've ever been in that position, it's freaky to say the least. Like you are Ferris Bueller and you've gotten away with a whole day off. Or even weirder. What's basically happened is your whole life has somehow changed and yet you don't even really know the extent of how it has changed yet. But your body for sure has changed, and so you begin your new life by dealing with that. But where is the lymphedema help? I mean, it's got to be out there, right? I've been digging and hunting and reading for almost 5 years, and I feel like I've got a pretty good understanding of how lymphedema effects my body, but I still can't tell you, after all my research, much about the condition overall. It's a strange

vague thing, (kinda like Howard the Duck), except even after following all the prescribed methods of fixing it, I've found that most people in the professional field have no idea what to do
with it (again, kinda like Howard the Duck). I've been Rx'ed Lasix for it, for example (bad idea), and have been given MLD (manual lymph drainage) massages by people who had no idea how to keep a bandage on my leg. I mean, without exaggeration, it would literally fall off by the time I walked to the car. A doctor once recommended I start cycling after my surgery because it would be very low impact on my body and really help with my lymphedema. A week later he takes a iliac node from my abdomen. Did he have no idea how much abdominal swelling would take place? Lymphedema does occur there, after all, and is agitated by bending over for any period of time. Or did he just not know what position you sit in on a bike? I mean really. It's infuriating to think that an entire medical field is clueless about this.

On the other hand, I HATE when people complain about something and go on and on without ever offering a solution or lifting a finger to try to fix it. And so, I have tried, and documented fairly consistently, what works for me. What I'm wondering is: would it work for you? I'm looking for others who would be willing to share about their experiences and how they've dealt with the condition, and possibly give feedback on techniques I've used (like whirlpools). Are you game?

Another thing I'm trying now is different types of workouts. Exercise definitely helps, but again, it is a slow, tedious process of figuring out what, how much, and when to do it. Too much and you're in a world of pain, too little and you'll swell up suddenly over night. So my new thing I'm going to try is yoga. I won't be consistently updating you, but I'll see if it helps.

I guess this was a venting post, but I could certainly use your help in helping all those people out there that are trying to deal with this. AW. We're making the world a better place. :)




Bob B. said...

Looking at that picture of what I take to be your swollen right leg I can only say that I must have been very lucky. In spite of having no lymph nodes in my right leg, most of the swelling is taken care of fairly comfortably by a thigh-high compression stocking. Last week I spent about 8 hours a day kneeling (at a meditation retreat) and the dear old leg just looked a bit more flabby than usual. I really shouldn't complain!

Carver said...

Hi Lori,

It's interesting to me how recently lymphedema has been considered and support given in terms of a side effect of cancer. My sister has lymphedema in one of her legs after surgery and radiation for cancer (not melanoma - hers was cancer of the cervix that recurred in her intestines). She got lymphedema in 1998 and it took a while for her docs to figure out that's what she had and she is seen by a top oncologist in Boston so it's not like she was in a remote area.

Eventually she did get sent to one of the few lymphedema clinics at the time. Zoom forward to 2005 when I got lymphedema after a groin dissection for melanoma and by then there were so many more resources and lymphedema clinics were more common and available. In the NC triangle area where I live there are a number of lymphedema therapists and hospital clinics. I guess my point is that it may be slow but I do think it's getting better.

Here's one of life's oddities, what are the odds that two sisters with two different cancers would both end up with lymphedema in one leg (opposite legs no doubt so together we come close to normal,ha). Take care, Carver

Anonymous said...

Lori! Oh my gosh! I don't know why, but I found myself thinking of you today. I don't know if you remember me - we "chatted" a few times on MPIP - I'm in Dallas also and we talked about getting together after you finished interferon, etc. Do you remember? Anyway - I battle lymphadema in my right let as well! In fact, I have an AWESOME therapist here in the DFW area who really knows her stuff and I'd be happy to share her info with you. I actually just had to have ACL surgery on my "lymphadema leg" about 2 months ago. You can imagine how scary that was!! I'd love to reconnect! Shoot me an email sometime! Dianne in Dallas (from MPIP) also, I'm on facebook!

Kelly Kane said...

Hellllo love! I'm so sorry your leg is giving you trouble -- or perhaps has since treatment. Maybe you'll find a break through treatment that works magic on it.

I'm actually thinking that lymphedema has become more common lately. Perhaps because I've seen a bunch of specials on TLC or Discovery about it. Do you know what I'm talking about? They were tited something like, "The Woman With The Giant Leg" or something dramatic.

Anywho, I hope you find some help with it. Yoga sounds like a terrific option for it. Ooo perhaps a mini trampoline. Sounds weird, but wouldn't that get your lymph nodes draining? I remember reading about that before - it also helps boost immune systems.

Looks like your last comment might be able to get you a good doctor at least -- and that's more than half the battle these days :)

Hope you're doing better.



Randi said...

Isn't it amazing that no one ever speaks of lymphedema before the surgery. I did not even know anything about it until i started having problems. They say it can start even 10 years after the lymph node removal and wtf you dont even know whats happening. I guess you might put off the surgery thinking about side effects from surgery. I am right there with you on venting about all this.

Julie said...

...oh i so know what you mean ... i have it in the trunk, effects the breast, arm , side and uncomfortable. I had over 50 nodes removed from the axilla ( melanoma too ) . its the one thing that reminds me each day of the cancer. my therapist uses kinesio taping which seems to really help... I also use the rebounder but like you said exercise sometimes too little or too much...crazy stuff... take care x


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