Nervous to fly...

Mary, it's very sad and very frustrating.  I fully understand if my primary care doc isn't conversant in LE.  She and I had that conversation, and she gently explained that she knew OF the condition, but not much more. Primary care physicians are held accountable for covering a lot of ground. I wish she knew more, and I have trouble accepting that months after I gave her a book on it (not huge...65 pages or so), she admits she still hasn't had time to look at it. 

But I reserve my real frustration for the breast surgeon whose apparent LE knowledge is minimal and outdated, and even the onc, someone I really like, has made some statements that reveal her to be way out of date. How on earth LE is not part and parcel of what these professionals are accountable for in their practice of medicine simply baffles me. 

Agreed about PCPs - they can't be expected to know much about LE. But when we have to educate medical professionals who work in surgery, oncology and radiology instead of them educating us - that's beyond belief.   

And worse - often they resist any education and minimize our concerns!!!   By contrast, my PCP is my best ally in writing scrips and doing anything else I need.  She knows she doesn't know that much about LE, and knows that I know a lot about LE, and she respects that.  I am eternally grateful to her.   

I'm beginning to realize just how fortunate I've been with this LE stuff--my BS was the one who told me about it, both before and after surgery. His nurse navigator also brought it up as a possibility and I was given a multi page handout with precautions. When I called my MO's office about the swelling I was starting to see, the NP talked me through ruling out cellulitis and got me in with a LANA certified PT the next week.



There are some good ones out there--here's hoping that becomes the norm, not an exception!

I have to fly cross-country next week for a conference.  I'm annoyed that I have to take up valuable suitcase space with my tribute sleeve and vest (but I'm glad to have them).  Annoyed that I have to wear my compression sleeve, gauntlet, and some kind of truncal compression, annoyed that I have to drink fluids with resulting multiple bathroom trips, annoyed that I avoid those yummy salty snacks, and annoyed that I have to do the arm exercises in flight.  If my carry on is too heavy, I'm annoyed that I'll have to check it as I absolutely refuse to rely on the kindness of strangers to help me hoist it into the overhead rack.  (Even before LE, I always hated people (yes, it's almost always a woman) who packs a heavy carryon that's way too heavy for her to hoist into the overhead rack and then at the critical moment when the aisles are jammed and everyone is just trying to get settled ASAP, she stands around helplessly and somehow expects other passengers to help out and hoist her bag for her. I hated it then, so I refuse to be one of those women now.)

Arrrggghhh - travel is annoying enough without having to deal with all this.  With my luck I'll be next to a crying baby.   

The only good thing is that the conference is in San Diego - can't get much better than that!

Maybe one of us should be snickerdoodle and one should be gingersnap?

So I flew a few times between surgery and rads...I have no idea why I was so hot to trot since I was in a lot of pain, but I did it. I also flew about 4 weeks after rads.

If I had it all to do again, I wonder if they contributed to my LE.

A few weeks after my LE started I took one more flight, my last for a few years, since I did not have a sleeve that fit I used kineseo tape and hoped for the best.

I had to fly cross country in December. I was really worried about it. I was compressed.

I did feel a bit swollen during and after the trip but honestly not much more than on a warm humid day.

I wish the silverwave bi-lat came in higher compression, I still sometimes feel like it "does" more than a regular sleeve by making all those little wiggles.

It's not a perfect fit for everyone, but I think it's a good beginner sleeve since it's low compression, it's not too tight, and I feel like the chevrons help, but your milage may vary.

I am being guilted by a spouse into flying again in June. I would rather not do it, but it wasn't the end of the world.

I will book a LE treatment for before and after the trip I think, especially after.

I have to fly to California to visit family in a few weeks, and I've been trying all my expensive closet dwellers to see if they'll manage my hand on a 6 hour flight, and I tried my Tribute, my Caresia arm with a wrapped hand, my ready wrap, and the decision....I have to @#$#ing wrap....It's stressful enough and to get off the plane with a swollen hand just wouldn't be good, but I'll be met by my mother who burst into tears the last time she saw me wrapped.

The best bet for pre-fab is the Caresia arm, with a finger wrap and two short stretches over it. I wake up with an okay arm and hand.

I usually fly with the older Tribute with a short stretch over it, but I haven't taken such a long flight. The newer Tribute chafes my fingers....

The flight to California has historically beaten me up, and it's SO MUCH worse with LE....But my parents are aging and I have to go.

Whine, whine, whine.

And, with the sequester, there will be less TSA and longer lines.

Whine

Kira, I feel you on hating the cross country flight.

Psychologically, I thought a one stop trip would be easier, but I think the brain trust felt non-stop was best. (I felt like if it was bad I could turn around and take the bus back from Detroit.)

I am still putting the kebash on vacations in hot places....the last thing I need to do it get off a plan and into the heat. SoCal in June may be warm, but not too humid.

Good luck!

Cookie, I'm going to the Bay Area where my family complains about the cold: did they forget we're from CHICAGO???? So it shouldn't be too hot. We're staying at UC Berkeley with the nuclear scientists--no lie.

Don't mention those evil adjuvant agents: I am scheduled for my THIRD D&C on tamoxifen and when I had the pre-op meeting today, I reminded them that the last brilliant anesthia guy decided that lymphedema=congestive heart failure and withheld all fluids. The consult thought I was kidding and read the note with shock. Her solution: "If he's on, ask for another anesthesia MD." Right.

Between the D&C and the cross country trip, I am not a happy camper.

I hate LE, and throw breast cancer in there as well.

I'm meeting with my onc the day before the D&C so she can share my quality of life and risk of secondary cancer, and iatrogenic over-exposure to operative risk joy....

And the AACOG statement on tamoxifen cites a Bernie Fischer study that more than 5 years increased risk without much benefit, so I agree with the blogger who discussed the ATLAS study (pushing 10 years of tamoxifen) as "Atlas, shrug"

On a tear here.

Carol

I love your idea ...how about it MODS?!

Nobody can believe that a hospital like MGH ( which actually claims to  run trials in LE that I believe I am " in"!)  never ever ever ( EVER!) mentioned a single word about LE, or handed out so much as a one page risk reduction paper. Nada ...nothing...zip!  I want the world to know- not because I am knocking them ( although I freely admit it angers me )  but to ' save' one poor soul from what we all will go through.  Does that make it all worthwhile ? 

Would I " give up the health " of my arm/self to save one woman?

Shamefully, no.

I am not that selfless.

BUT

if I can't have my " old arm" back, and I am stuck with this one (and I am ) then I WILL feel better, yes, much better, thinking perhaps  one person has escaped this because of risk reduction information and better care.

Cookiegirl

Please keep us informed - I hope your journey (pun intended) ends happily. You're a gem.

No, Cookie, it just keeps coming, and I once read that tolerance for a chronic condition wanes as the condition lingers, and that sure is the case here.

I'm spitting nails about the third D&C on tamoxifen....And the institution where I'm getting my surgery is the same place where I was treated for breast cancer, and their attitude is surely lacking...And I've given lectures there to their surgeons/oncologists/fellows on LE, but it clearly hasn't filtered down.

"We'll put a band on your wrist". Yeah, I feel secure.