So, Monday evening while sitting in my room, I happened to glance down and notice that my foot seemed pretty fat. I glance at my other foot and my observation is confirmed. b/c my other foot is decidedly thin and much more 'normal' looking.
I figure this can't be good. And proceed to freak out in my head. I racked my brain (and the brains of those around me) to figure out what the cause could possibly be. It hasn't gone down. but there's no pain, no discoloration, i can feel my feet and move them around just fine. it's just ugly, and very worrisome to me. And even more worrisome that I seem to be freaked out about it, and yet noone else seems to want to acknowledge the potential fucked-upness of this.
I tell my doc, they do a doppler ultrasound, they find no clots. and so that's that. I'm told to just elevate my foot. keep an eye on it. and if anything changes, let them know. That's it? Well, I already know its not normal. and there has to be a reason. And given all I've gone through and the fact that it's NEVER just 'nothing' that goes away with no further ramifications. Nothing has ever just gone smoothly for me throughout this all. I'm really tired, it turns out to be anemia and i'm damn near out of blood. I am short of breath, and can barely walk up stairs...turns out to be spiking liver enzymes and potential toxicity to chemo. I'm trying to be as proactive as possible, and yet seem to get nowhere. i'm extremely aggravated and upset.
So, does THIS look 'normal' to any of you? What the hell else can I tell my doc to do? I'm supposed to be able to go to my doctor and HE'S supposed to be the one who works to figure out the source.
Hi Becca, this is Jan Dollar (from j-pouch.org). I was asked to take a look at your blog (and your feet). My first suspicion was the same as your doc's- blood clot, but since your Doppler study was negative, that strikes that one off the list. The only other things I can think of is cellulitis, but you have no pain or redness; or perhaps secondary to medications. You'd think that it would be equal in both feet if it were something systemic like medications, but not always, particularly if you have some vein issues in that leg that are not bad enough to be a current blood clot (like some damage from the past). Only thing you can do (other than stop the meds you cannot stop) is to elevate the affected limb as much as you can, wear support hose (put on first thing in the morning, NOT after the swelling has gone on all day), and stay off your feet as much as you can. Hopefully, this is a short term problem.
ReplyDeleteBecca - I had 'stuff' happening on my arm and emailed Jan. One of the things she mentioned was cellulitis. But I had some pretty bad pain and some redness. Turned out Jan was right. And I also learned that one does NOT mess around with cellulitis. So if you start feeling any pain, you get your pert little butt to the hospital okay?
ReplyDeleteA little aside. That photo of your left foot is what my fat feet look like all the time.
Hi Kathy and Jan! thanks for the input. Yes, it'd be a bit easier to understand if it was in both feet.
ReplyDeleteas i said, there's no pain. no redness or discoloration. I thought there was no pitting. but i guess i just didn't know how to test that b/c my mom (the nurse) came by and said it was. She also found me some Tet Hose today, though i haven't gotten them yet.
I was just taken off all the drugs I was on (around july 31st) b/c of what we think was toxicity to the chemo (if you'll read the post before this one, i mention my most recent troubles before this current issue). My liver enzymes spiked super high in a very short period of time and my gallbladder seemed to not be functioning so well (i was seeing oily orange blobs coming out in the stool when i was emptying my pouch. and the stool was all a kinda manila envelope color and had an odd sour smell to it. and i dropped a ton of weight rapidly (about 20 pounds in less than a month). and then my potassium was way low (about 2.0 down from 3.6) so i was given some potassium pills for that. given a ton of hydration (a bag a day for about a week) before the potassium pills they were also putting the potassium in the banana bag, as well as magnesium and electrolytes.
the liver enzymes went back down pretty quickly after i started getting hydration and the electrolytes etc. and i do believe now they're back to relative normal.
my blood pressure is always pretty normal, with all that stuff happening it was pretty low, they coudl barely find it on most of those days. so i don't think right now high blood pressure is an issue (and even though i've been dumping salt all over EVERYthing i eat these days, doubt its too much sodium)
i'm just at a loss. and honestly, the worst fear is Lymphedema. noone has brought that up, but i've been aware of this condition in cancer patients since almost the first week of diagnosis, and so when i saw swelling that immediately popped in my head.
i am also wondering, should i get another doppler in a short while if it still persists? I mean...maybe they just couldn't see anything on that day but there is something there? I don't know, all I am certain of is that nothing that happens to me anymore is a fluke. EVERYthing almost always can be traced back to chemo/cancer, or a correlation of the two. so i dont like the idea of sit here and watch.
this morning, after elevating my feet all night while i slept, the swelling seemed mildly less...but barely. and then, walking around and sitting all day, its a bit more puffy again.
ugh. ugh. ugh.
(oh, and I know both of you are in Cali..my mom and I are going up to San Fran in a few weeks...either of you nearby?)
I've forwarded your post to Jan because - well - because she knows everything ever.
ReplyDeleteI looked up lymphedema and I'm going right to this statement:
"No cure for lymphedema exists. But lymphedema can be controlled. Controlling lymphedema involves diligent care of your affected limb."
But if it's this why wouldn't those doctors have ruled it in or out? And why do you always have to do their work for them? And when are they going to give you a major cut of their salary? HUH?
Oh - I didn't read all the way to the end. I'm about 2 hours south of San Fran. But I may or may not be up at UCSF for some "stuff." Not big "stuff" just some minor "stuff" I hope. Where will you be and what are you going to be doing?
ReplyDeleteBecca, Jan again (I just haven't taken the time to sign up for a Google account)
ReplyDeleteI don't think it is lymphedema. If it was, more than just your foot would be edematous. Your leg would be HUGE. I put my money on the drugs. Maybe your albumin level is low, but again, if it was that, I'd expect it in both legs. But, who knows, maybe one leg has better venous return than the other. Are you 100% certain you never had any problems with that leg before (blood clots or similar)? You really need to wear your support hose while up and you have to put them on first thing in the morning. Also, when you elevate your legs, they need to be above the level of your heart for the edema to reduce. You can even wear your hose to bed to assist reduction of the edema.
But, basically, it is not dangerous by itself. Watch for it increasing, press on your shinbone, looking for pitting there. I have pretibial pitting edema on my left leg and that is 14 years after my blood clot.
I live in Fremont, which is in the East Bay- Don't get to the UCSF area much at all.
well, i suppose that my other foot has a very very slight swell to it. not barely even close to my left foot though. or else i'm just not able to tell anymore.
ReplyDeletei've NEVER to my knowledge have had ANY issues with swelling anywhere, or clots anywhere.
and the lymphadema thing, well, while yes, the photos i've seen show HUGELY swollen limbs, it would have to begin somewhere, right? I didn't think one night you go to bed, and the next morning you wake up with an elephant leg. So I suppose lots of my concern is just, what if this is the beginning of something and I am just noticing the first few symptoms.
Its a nagging concern really. mostly b/c well...in the past three years i've not gotten much of any "good" news. so i'm a bit on edge about everything.
when i elevate it all night (only when i'm in bed am i really able to elevate it well above heart level. if i'm sitting here at the computer, i can put my feet up on a chair, so i know that's not really doing it.
but when i elevate them all night, in the morning, the swelling is down mildly. but by the end of the day (of not having it elevated, no tet hose) its back to looking like it does in the photo. not necessarily escalating i think.
my mom just gave me the tet hose yesterday. so i'll probably try em out tomorrow morning. i would rreeaaaaallly like for the swelling to just go away all together already. aarggh.
Actually, my recollection is that lymphedema does occur rapidly, over a matter of days. Your edema is pretty mild. Is it possible you had stuff going on you were not aware of following your surgeries that resolved by the time you were more alert?
ReplyDeleteJan Dollar
jan, as far as i'm aware, no. b/c my mother never left my side throughout my time in surgery (even when i was fresh out from surgery, they didn't have a room ready for me on the GI floor so i was in the nuero floor for a day or so (i was very much 'out of it' so i barely remember it, other than my mom yellin at random nurses "SHE's NPO right now!! Do you even know what that means?!" and some guy in the next bed moaning.) and she never made any mention of it (my moms about as hyper-vigilant bout these thigns as i am)
ReplyDeletei guess i'm just not really confident i understand this generic "edemia" term.
OK, understood. Edema is a sign or symptom of something else, sort of like a fever is not an entity unto itself. So, you are right that it means something is going on. The challenge is figuring out if that is something to be concerned about. In your average person, it makes sense to not try to over-analyze it too much. But, with your history, it is only natural to assume the worst, and probably not a bad idea, until you rule it out. That is because the edema itself is not dangerous, but you just don't know if the cause is dangerous until the dangerous causes have been ruled out. The fact that this edema is pretty mild is a good sign, but still, it bears watching.
ReplyDeleteI suppose that this could be a very early case of lymphedema. I forget, did you have radiation Rx, especially recently? If you really suspect this, a nuclear scan could show the difference between lymphedema and a blood clot and possibly the source.
Here is a link to a good article about it that may give you some insight (and also tell you how challenging it can be):
http://www.jabfm.org/cgi/reprint/19/2/148.pdf
Hope this helps,
Jan Dollar
gah! see. i knew i had reason to worry. i just want there to be a clear cut way to rule out things, and then pin point the actual thing.
ReplyDeleteI'll ask my doc tomorrow his thoughts on a nuclear scan.
This evening he called in a script for me for a diuretic. gonna take one in the morning and see how it helps. (i'm fairly frightened of the idea of a diuretic, given how VERY prone to dehydration I am. Like anyone lackign a colon would be, but then on top of that the fact that just a very few short weeks ago I was in the doc office for 4 or 5 days every day getting a bag of hydration wiht potassium and magnesium.
Plus, I know this diuretic can make my potassium go up, but i'm supposed to be taking these potassium pills. so first I need to ask him about that.
ggggaaaahhhhhhh. (oh, and both feet are swollen now. bout the same amount. but definitely both of me.)
Hey chica, hows the leg(s)? As always you are in my thoughts, if you want to be or not. ;p
ReplyDeletemaybe this:
ReplyDeleteAnasarca, also known as "extreme generalized edema" is a medical condition characterised by widespread swelling of the skin due to effusion of fluid into the extracellular space. Often this condition manifests itself in the male genitals, causing painful swelling and difficulty urinating.[1]
It is usually caused by either congestive cardiac failure, liver failure (cirrhosis of the liver) or renal failure/disease and severe malnutrition/protein deficiency.
It can also be created from the administration of exogenous intravenous fluid.
Certain plant-derived anticancer chemotherapeutic agents, such as docetaxel, cause anasarca through a poorly understood capillary leak syndrome.
This condition is also called leucophlegmatia.
Sue
http://cancersucksbigtime.wordpress.com
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