An App for Lymphedema Self Care

I am on the fence on this one. At NYU, a bunch of really smart people have developed a prototype of an app for self-care for lymphedema. They have tried it on about 20 people. They realize that they used their app on patients who are highly educated and tech savvy. A great idea. Right?

Not. They realize their audience is skewed in one direction. But I think I could be put in that group myself of well educated and tech savvy but I am not going to jump on my phone or laptop at every twinge. Not happening.

I think I blogged about the idea of 'cool' apps for anyone over 30. Not so great. I like the idea of helping with self-care for patients but not necessarily an app. I think we need a new idea for this. The internet and technology do not solve everything.

Lymphedema and the lymph system

So as an extra gift with breast cancer, I have lymphedema in my left arm. I am very coordinated and fell on our icy front walk and landed on my hand. My arm swelled up and voila, I have lymphedema. I have a 'lovely', 'skin tone' sleeve that I get to wear sometimes. It even provides some sun protection so I get a tan line on my wrist.

So what is the lymph system? I had no idea until I fell that day. I sometimes try to find more information on the lymph system.

First of all what is lymph? That clear fluid that seeps out of blisters and cuts sometimes. Its the other system in your body like your blood system but it has white blood cells and cleans out the dirty cells.

The smart people at Dana Farber provided this nice picture and a more detailed description on their blog here.

So if you look at the picture in detail, you will see how it flows around your body. And its pretty much divided in four quadrants of the body: top right, top left, bottom right, bottom left. Lymph nodes are lymphatic coolers. But if some get taken out, a 'traffic jam' occurs and all that lymph fluid gets backed up in whatever part of your body is beyond the incisions.

In my case, they took a big scoop under my left arm that grabbed a whole bunch of nodes. So the little lymphs get stuck in my arm which swells and is permanently larger than my right, dominant hand.

A former co-worker of mine had a bad leg from something traumatic and walked with a lymph. He ended up in the hospital for six months with lymphedema in his leg. I have a friend who had lymphedema in her arm and also on her side and in her abdomen. With treatment, she is now a smaller size in her torso.

So this is a nice little education class for the day. Class dismissed.

One heck of a week

I haven't been blogging because I've been a little busy, to say the least. Yes I still have a cold. It keeps lingering which doesn't help anything. And it means I can't go to the gym and work off the stress.

During this week we have had all kinds of fun:

• The buyer of our old house's lender wanted documentation that doesn't exist. We had to jump through hoops to get a letter from the town on something that no one has ever asked for, ever. Our broker came through on this. But it cause a lot of stress, starting New Year's Eve.
• The buyer of our old house's broker is an idiot. They didn't understand there was any reason to do anything helpful, or have someone keep on top of things while they went out of the country for the holidays.
• The seller of our new house's broker is also an idiot. Although the seller was legally required to ensure that the house was maintained and snow removal was taken care of after they moved out a month ago, nothing was done. The broker blamed the seller for not making plans and then dumped it all on the seller's attorney to get it taken care of. I met her and I could tell she was more concerned with how she looked than actually touching anything. She never even tried to call a plow service, she made the attorney make the calls. And the attorney bitched about it at the closing.
  Because we had a storm last week which snowed and switched to rain and sat on the driveway untouched, it turned into a glacier that my husband spent hours salting, sanding, and chopping yesterday until a plow finally showed up. I told them we would go to the closing but not sign anything until we had proof the driveway was clear (so the movers could get into the driveway today). We were late to the closing because we needed to go see the plowed driveway ourselves.
• Finally, we took our cats to a cat sitter for the duration of the transition. One of our cats, Boots, got out some how. We found out yesterday morning that he has been missing since Wednesday afternoon. While my husband was shoveling snow yesterday, I was walking around near the cat sitter looking for him. I am going to head out this morning to go look for him in another neighborhood near by where there might have been a sighting. 

But finally we own a new house and are moving in today. The POD will be dropped off this morning by 10. The movers are coming between 8-830. Verizon is coming between 11-2 and the hutch we purchased will be delivered between 330-4. But I need to go find the cat.

Oh, my lymphedema arm is not happy with all this moving business. I might have actually carried things and am feeling it in my arm. And all my sleeves are packed so I have to wait until I can unpack to find one. but I have been doing my exercises which helps.

And my cold is still hanging in there. Yes I will go to the doctor if I am still sick on Monday.

Good things come to those who wait

Back in 2010, I blogged about wishful thinking for a cure for lymphedema and other things, like cancer. And now, (insert drum roll here), a study is going on in the UK on 'replumbing' lymph nodes after breast cancer surgery. Barbara Jacoby over at  Let Life Happen blogged about this.

So five years after first hearing about this surgery to reattach lymph nodes now there is a trial going on. This doesn't mean I can talk to my doctor about having this surgery any time soon, but I can see the progress.

The world of a patient is filled with hope and waiting. It is nice to see that progress is happening once in a while. We hear about all these breakthroughs but then it is rare to see them start to actually be rolled out. That is when good things come to those who wait.

We just sometimes get sick of waiting so long.

And I would like to point out that there is no way that I will undergo a five hour surgery under local and use my other arm to read a book or use an ipod during it. I will be fast asleep so I don't freak out. Yuck.

Lymphedema sleeve and all

Yesterday I had a (not so fun) back procedure. As my arm has been acting up, I wore my lymphedema sleeve on my left arm. I am going to the lymphedema clinic in another week or so and will keep wearing my sleeve.

But I digress. I got there and got checked in and changed into a lovely hospital gown and robe - they make them ugly so people don't steal them. The nurse took my vitals after getting me settled in a big comfy chair. Even though I was wearing my sleeve she asked if she could use my left arm for blood pressure. Really? But she did put the IV into my right arm without questions

Then when I got positioned on the table with my back (and the bright red underwear I wore on purpose) exposed for the procedure, they needed to hook up heart electrodes on my chest as well as oxygen in my nose, and blood pressure, O2 sensor, and start the IV on my left arm. A student nurse asked if all three could be done on one arm and the other nurse said yes.

The procedure went well. It should help with my back issues. It was painful to have but it should really be beneficial once it heals up. Before it, I could barely stand for ten minutes before my back started to hurt. This morning, I slept late and it didn't hurt at all until I walked downstairs to feed the cat.

I have a love-hate relationship with my sleeves. I really dislike wearing them all the time. It will start to annoy me when either the little silicone disks cause a rash on my arm or I start to get a tan line on my wrist. (Both have happened in the past.) In addition, its a reminder about cancer - sort of like wearing your heart on your sleeve, you wear a sleeve for your cancer.

Issue #937.2a that they never tell you about having breast cancer.

There are so many things they don't tell you about having breast cancer. Here's is another one. You may not be able to wear your wedding ring. Really. My cancer was on my left, I had a bad node that lead to a axillary node dissection, which lead to lymphedema issues.

I woke up in the middle of the night last night and noticed my left arm was puffy. This morning I spent some time and got my wedding and engagement rings off. Now the puffiness is subsiding. I have done some of the stupid lymphedema exercises. I will wear my sleeve today.

But my rings are on the pinky finger of my right hand. They feel like they might fall off. Damn. I want to wear them on the ring finger of my left hand and can't.

Cancer sneaks into your life in little ways. I wish they told us about all the issues before hand.