Feel sad-Bilateral lymphedema and back lymphedema

Meg,

  I find when LE flares, the despair is profound. I hope Binney comes along, because she can answer so many of your questions, but please know that it's reasonable to feel so upset and that I do believe you can do this.

  LE stinks, and having it in both arms and your back is a horrible burden.

  I wish I could fix it, or at least offer more concrete help, but please know that I care.

  Meg, one of the most prominent physicians for lymphedema is at Stanford, Stanley Rockson, perhaps a consult could help guide your lymphedema care. 

http://med.stanford.edu/profiles/Stanley_Rockson/ 

Kira 

Hi Meggy,

 I see Dr. Rockson too - I live in Los Altos so you and I are almost neighbors!

I managed to avoid lymphedema in my arm after a mastectomy but after my hip broke, surgery and rads (the cancer had metastasized to my hip bone) my left leg developed lymphedema.  I found the Flexitouch machine to be immensely helpful.  They also do upper body garments. Maybe you'd want to ask Dr. Rockson about it when you see him.  You could also look them up on the web at  www.flexitouch.com.

You can also PM me if you want to discuss it more. 

Good luck and please feel free to get in touch with me if you'd like.

Rachael

Me again.  I just saw your reference to the Flexitouch in your post. I'm sorry I didn't see it the first time I read it. 

Ooh, Meg, I could have written every bit of the despair in your post myself! I live in the Arizona desert, with compression garments on both arms and my trunk. All I can say to you is, it gets better -- but that doesn't help, because when I was where you are now I wouldn't have believed it.

A couple of things help.

Good therapy, for one. If you don't hit it off with the first therapist you see, request another. This is a long-term relationship and it has to be comfortable. You're in a good place -- there are lots of therapists in the area. Dr. Rockson is a real LE expert, who may or may not have a therapist you like and trust, so don't feel intimidated -- insist on getting the help YOU need.

Staying cool is paramount, and summer is definitely harder than the rest of the year. I have Solaris and Jovi night garments, both of which can be stuffed into the fridge during the day (in a plastic bag, well away from the onions!) for a refreshing coolness that lasts hours, because the foam chips inside the garments hold the cool. Much more comfortable than wrapping at night.

There are neck bands you can buy that you soak in water and the little beady things inside them hold the water. Don't get the big kind, because they're too heavy when they're wet, but the narrow ones work well to keep you cool throughout the day. I also made myself some small heart-shaped "pillows" filled with flax seed that I stick in the freezer and stuff down the front of my compression cami -- helps keep your body core cooler.

As for garments, there's a new company at TheLymphedemaSleeveCo.com that makes a sleeve that crosses the shoulders. I haven't tried it, and I need to write to them and find out if you can get it made to fit both arms, but take a look at it and see if you think it might work for you. I wear a WearEase camisole and sometimes a WearEase bra, both of which have a lot of back coverage. I've also had Solaris design me a day vest to meet my specific needs, but it's hot so I don't use it in summer. Bellisse.com also makes a compression bra -- have you tried that one? It took me a long time and a LOT of trial and error to find garments that work for me. Really hard, because we don't want them anyway, so nothing's going to be ideal, but I've finally worked out what works for me and it's SO MUCH less hassle and frustration. The trial and error part, though, is terrifically frustrating, and I lost it often along the way. My family has been infinitely patient, thank the Lord! It's also expensive. Repeat after me: I am worth every penny it takes to get this worked out!!!

Armsleeves, ugh. Custom garments by Gottfried work for me, but everybody has their "favorite" brand. Gottfried's have a super-soft, smooth lining in the whole elbow area, which I really need. Short of that, Bio-Concepts can make garments in a fabric called "Soft" that is exactly that: feels heavenly. But it's not sturdy and tends to run, so when I use those I carry a bottle of Fray-Chek with me the first week or so until they stop running. Like I say, there's no "ideal" here, but there sure is every reason to hold out for garments that are comfortable and well-fitting and doable. LympheDivas has wonderful patterened sleeves and gauntlets in two compression levels, but no custom garments. Both Gottfried and Bio-Conceps offer a range of colors, so fashion choices are possible too.

As for wrapping, a therapy intensive means a couple or a few weeks of wrapping. No way around that. It's like chemo or rads -- you simply have to make room in your life for it, or you can't move forward. Once the therapy phase is over you switch to the garments of your choice for day use, and you can get on with your career. Whew!

There's grieving involved here, Meg, and that is hard work. Do take the time you need to move through this and out the other end to reclaiming your life. It'll happen.

And here we thought once we got through the cancer treatment we'd be out of the woods! 

Hugs, and prayers for your safety as you navigate the months ahead with the triple neg. It'll be good!
Binney

Oh, Meg, I know so many of us can relate to what you are talking about. I handled cancer and its treatments quite well emotionally, but dealing with LE put me through many dark months. Partly because it is so hard in itself and partly, I think, because other people just have no concept of what we're going through. When you tell someone you have cancer, most people realize that it is a serious big deal. When you try to explain about LE, I think people are just confused.

My LE is managed but it still has the power to make me miserable and upset. I have LE in one arm and in my trunk. Last summer it was 100 degrees almost every day, and I have a young daughter who spends a lot of time outside. Here are some of my tips for how  I handled things, and some ideas I have that might help.

I am still looking for a good garment for the truncal LE. I have a custom made vest by Juzo that provides great coverage and is very effective; it covers my upper back quite well. The problem is that it is hot, very obvious under clothes, and makes me feel like a second-class citizen. So I can't quite recommend it but if I needed something to get the situation under control I would definitely try to stay in the air conditioning and wear it as much as I could. 

I am in the process of having a vest custom made by Barton Carey. They have a soft fabric line that seems like it will be cooler, and it even comes in cute prints and colors. Unfortunately, we have had to send it back three times, even after a rep from the company came out and measured me herself. So I am no longer optimistic about that option, but possibly it would work for you? They can make a garment to cover any body parts you want, including a vest with sleeves attached if that would be helpful. There may be some other company that can make a shirt with upper back coverage and attached custom-fit sleeves? 

Last summer I did spend a lot of time outdoors in the heat and here's what worked for me:

I used the gel-filled neck wraps that Binney suggested. I had three of them that I would prepare every morning by soaking in water and then putting in a plastic bag inside another bag that contained ice. That way they would be as cold as possible and I could switch them out. 

I carried ice water and iced green tea with me everywhere. I like to carry them in Mason jars but I got kicked out of the public swimming pool for having glass so I'll have to find a stainless steel container for this year I guess! 

I kept my hair up all the time. This year I think I might get my hair cut short again. I have also found that wearing certain types of makeup helps me feel cooler than either wearing other kinds or going without, but that may just be me. Anyway, it takes trial and error. 

I swam whenever possible. In Austin we have two pools that are fed by cold springs, so the temperature of the water is around 70 degrees year round. It is divine! by staying in the water up to my neck I was able to stay cool and avoid wearing the compression garments, which was a double win! Also, I found that being in the cool water seemed to help me stay cool all day. I don't know if you have anything like that where you are but it's worth looking for! 

 I also tried to carry a cooler bag with cut up vegetables and fruit, and just ate as much "cool" food as I could. melon, cucumbers, etc.

I hope some of this helps. Mostly I just want you to know that you are not alone in feeling this way.  I am already starting to worry about the summer, partly because I thought I would have a better vest/bra/garment by now and I don't. 

Best,

April in Texas

Suzybelle--"What's up with the glove?"!!! Good for you for responding. 

Times like that I fall back on my grandmother's very proper comments that one should not be making personal observations about another, unsolicited.

I had a kind co-worker come into my office and give my hand a poke and say, "More swollen today?" and she meant so well, and I was mortified.

My daughter is doing research in Mississippi--at Ole Mis and in Jackson, and whenever she goes down, she tells me about the food (and the kindness of the people who help her out)--she eats at this Two Sisters in Jackson, and it sounds so wonderful. She's researching the fraternal hospitals during Jim Crow and it's been fascinating for me to read.

What's up with the glove---what's up with common courtesy???

Kira 

Suzybelle, can you hear me hooting all the way to Mississippi?!! I LOVE your response.

"What's with the glove?"

"I like it. It looks cool."

That is SOOOOO funny.  I will definitely use it as needed. There is absolutely no come-back to that.

I am so sorry for the stunning rudeness you had to deal with , but I think you just made my day.

Big hugs,
Binney

meggy:sorry, haven't been on site 4 awhile. i have the perfect thing 4 the summer; just don't if i can wear it w/le..will ck it out on the 21st, or be4, will see therapist then.or, if any of u can speak 2 urs be4..it's called a"cool vest" have been wearinh them 4 5 or more yrs. for my m.s.... vest unwear over t-shirt, cami..it has little compartment where actual ice packs slide in. front and back.. check on m.s. sites, iwill try 2 find info. binney, do u know if ice is ok for le? it doesn't touch skin.. they work great 4 me, i live in s. fla..so it's HOT... will send info later...light and love..3jaysmom

Hi Lisa

I just noticed this was your first post, so I wanted to send out a welcome ...sorry you have to be one of the LE "club members" but you will find  the ladies in the LE threads to be the "BEST"  ( imho   :>)

I am sure we are all glad to have an OT on board as well!   be careful- you may just get pecked with questions!

Thx for your post.

Marjory, welcome to bc.org!

I was wondering if you have been evaluated by a well-trained and experienced lymphedema therapist? From your other post I take it you have some swelling and discomfort on your chest as well. Depending on the cancer treatment and surgeries you've had, this could be related to lymphedema, but doctors don't always know how to diagnose it or who to send you to for treatment. Here's information about how to find a qualified lymphedema therapist near you. Then all you need is a referral from ANY member of your medical team to see one for an evaluation:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Please keep us posted! Gentle hugs,
Binney