Living With Lymphedema

The best way I can think of to talk about my experience with lymphedema is to tell you about my morning.

It's time to shower. Before I can, I pull out my PitPak, which I keep in my right armpit at night to keep the swelling down. Then I take off my Under Armour compression shirt, which I wear to keep mild compression on my chest and torso and reduce the amount of pain I have without compression, so I can sleep. It also helps keep my PitPak in place.

After my shower, I make sure I'm good and dry so my compression garments don't trap any moisture. Then I grit my teeth and put on deodorant (I get electric shocks down my right arm when things rub down my pit like that, though it's better than it used to be and I've learned to apply it with much less pressure). After that I don my Juzo Armsleeve, using "It Stays", a roll-on adhesive, to keep the top from rolling down and needing to be messed with all day. (An aside: I wear a plain beige sleeve. I've been asked why, when I have blue hair and love color, and there are so many really awesome designs available. It's because I don't want to be noticed for my sleeve and have to answer questions about it. The beige one is almost never noticed or commented on, and besides, I'd rather be noticed for my cool hair or my knitwear than my sleeve!) If my hand is swollen, I have a gauntlet that I can wear. I only need it sometimes, thankfully.

Next I put on regular underpants and pull on my custom garments. The closest description I can give is bike shorts and a tank top, but that's not quite right. The shorts have silicone bands on the leg openings to keep them in place, and only come up to about the top of my butt crack (sorry). The top comes down further than the top of the shorts and they Velcro together. In combination, they keep down the swelling in my left lower abdomen - a result of the lymph nodes moved during my reconstruction, as well as the area below the bra line, and my upper chest. Without compression I'm in some degree of near-constant pain, lymphatic fluid builds up, and I swell and am generally miserable.

Here's a pic of them, freshly washed so they are at their tightest (thus providing the best compression):

Note: my "foobs" are not that small - that area is pretty elastic! But since I have lymphedema in my entire chest, the compression has to be pretty specific without causing the "uniboob" look under clothes.

Putting on my garments is a hassle. They are (for hopefully obvious reasons) very tight, so I have to wrestle with them. The Velcro likes to bunch up, and when I put on jeans I have to really fight to keep it lying flat so it doesn't show. Also, the top comes up rather high, so in order to wear v-neck or button-up shirts I have to either wear a shawl (thankfully I'm a knitter and the weather is cooling down, but in the heat of Florida summers, the garments are ENOUGH on their own) or a bandeau top to hide it.

Once I'm dressed, I can pretty much forget about my garments until I have to go to the bathroom. Then I get to wrestle all over again as I position the shorts and top properly and get the Velcro to lie as flat as I can under my clothes. It's a hassle, but I consider it better than the alternative (not wearing them), especially since I can't wear a regular bra anymore - I have a long-line mastectomy bra, but it's not comfortable and doesn't stay put, nor does it provide compression.

Other times I can't forget about my garments include when I shift wrong and the underarm fabric pulls uncomfortably, my sleeve shifts down ("It Stays" has finally eliminated that issue), my hand is swollen and I need the gauntlet, which can restrict some movements, or my clothes don't look right. I realize this may seem trivial, but those of us who've had cancer just want some normalcy, which can be really hard to achieve. The custom shorts don't come up very high, so there is an area of overlap where there's a lot of compression at the top of the shorts, which means that I have a "pooch" just above that where clothes can look odd. I try to find flattering clothing, but since I'm still struggling to accept my body and now the garments I have to wear, that can be really difficult. The garments are thick and add a layer of fabric that is not only warm, but also ungainly.

I'll do another post soon about lymphedema itself, the risks and potential complications. I thought I'd start here - with everyday living.

Keep in mind after reading all this that I have mild lymphedema that's manageable with a combination of MLD (see previous posts) and compression. Not everyone is lucky enough to catch it as early, or to be able to have treatment and get proper garments.

Nope, I really can't raise my arms like that

I was asked on Knitters with Breast Cancer to detail the issues I've dealt with since my mastectomy, and as I prepared to head over here and write this entry, I stopped by Facebook. Kathi of The Accidental Amazon had shared the above picture, with a link to Feisty Blue Gecko's Unbelievable, a post about, as Kathi says, "The latest in tacky, ill-conceived, wrong-headed marketing exploitation." To paraphrase Feistyblue, many of us cannot go braless OR wave our arms in the air like that, so way to rub it in our faces, marketing people! In fact, I just returned home a couple hours ago from having an injection in my left shoulder for yet another impingement (I went through it with my right shoulder last year). No way I'm even gonna try that pose.

As always, Kathi writes beautifully about many of the issues mastectomy patients deal with: Arm and Shoulder Pain After Breast Cancer. I've had many of those myself. 

So, without further ado, my list of crap I've dealt with since I had surgery to remove both my breasts on February 8, 2012. They aren't in chronological order, but I'll try to delineate which have improved/resolved, and which are ongoing, as well as what treatment I had for each. Also, remember that not everyone experiences all, or even part, of what I have - I tend to be a "worst case" in part due to other health issues. But the things I'm dealing with are NOT uncommon!!!

Keep in mind that I was never told about a single one of these before my surgery. Not even a hint.

• Axillary Web Cording/Syndrome - extensive physical therapy for nearly 4 months. The cording isn't gone, but is substantially better. I rarely get electric "zings" down my arm these days.
• Shoulder Impingement Syndrome in my right shoulder - again, PT, which was concurrent with the therapy for cording. It's considerably better, but not gone; as I stated above I've just gone through diagnostics for my left shoulder including an MRI and an injection (which I also had in my right shoulder last year). PT will follow soon. Again. 
• Post-mastectomy Pain Syndrome (PMPS) - improved, but not resolved. My symptoms include phantom pain and itching (I say phantom, because I have little to no sensation in the areas that hurt and/or itch), and the above issues. Acupuncture helped tremendously, but I still have it on and off. And when it's on, IT'S ON. If you've ever had an itch that won't go away, multiply that by a thousand and then stick it in a place you cannot feel. It will seriously drive you crazy, and doctors DO NOT discuss it.
• Hypersensitivity in my chest and below the bra line where numbness transitions to so-called "normal" sensations. 
• Numbness in the reconstructed area (what you might call "breasts" or "foobs"). That was the ONLY thing I was told about before surgery. And while I was told, absolutely nothing prepared me for its reality or the psychological effects of losing a major erogenous zone. I also have numbness around my bellybutton from the reconstruction, since after the TRAM/DIEP they (sorry to be graphic) basically hauled all that skin up and moved my bellybutton. I have the same hypersensitivity on the borders of that area as I do in my chest. I never know when something's going to touch me in the wrong place and trigger the hypersensitivity, the pain, or the itch. It could be a hug, a touch, or even the fabric of my clothes.
• Pain in my lower abdomen from that part of the surgery. That's resolved now; it took time but no therapy was needed.
• Lymphedema. Oh, lymphedema! Many people know about the compression sleeves that help with axillary lymphedema from mastectomies; I wear one on my right arm. I occasionally need a gauntlet for that hand when I'm really puffy (I call my lymphedema "puffer fish" - because it changes like one, with the pain being the fish's spines). But most people don't know about truncal lymphedema, which I also have. I have it in my right upper chest, my "foobs," my torso, and the left side of my lower abdomen. I'm having custom compression garments made that will amount to a pair of bike shorts and a tank top, but don't think they're glamorous - they are really ugly, and the top had to be redone because the first one showed under pretty much every shirt I own except high-necked t-shirts, which I don't care for, and wearing clothes I like is a major thing I don't want to give up, nor should I have to! Until they're ready I wear a full Spanx, and yes, that makes going to the bathroom a challenge. But I cannot go braless without pain, and regular bras aggravate the lymphedema just below my bra line something awful. I own a long-line mastectomy bra that I wear sometimes, but those were not developed with comfort in mind! I sleep in an Under Armour compression t-shirt that holds a Pitpak in place in my right axilla to keep the swelling down overnight. I am so very sexy these days, with the lymphedema garments, all the scars, and knowing that touches can trigger extreme discomfort and pain at any time. I had a month of daily PT and have at-home exercises and MLD now, which admittedly I am not doing daily, but more on an as-needed basis.

Told you I'd be back if I thought of more: 

• Sternal pain. For the first year or so, my sternum ached almost constantly. Like a dull toothache pain that never completely went away. It took time and is finally better, although occasionally it returns for a day or so.
• Lower/mid-back pain from the TRAM/DIEP: it took me two weeks to stand fully upright. I was amazed when I first woke up from surgery how badly my back hurt; that was the absolute worst part of the early days for me. I would just cry from how horrible that pain was. While it did eventually improve on its own, I wish I'd been warned how awful it would be.
• The feeling I'm wearing a tight harness around my chest. I'm told this is almost universal to those who've had mastectomies; my plastic surgeon said that they can't really study whether it improves or whether we just get used to it. I get it now when I go braless, which is why I can't, because why would I willingly subject myself to that pain?

Some of these things can happen after lumpectomy and radiation, but I can only speak from my own experience with a simple (vs. radical - there's nothing simple about all this), skin-sparing double mastectomy. Also, I haven't really touched on the psychological crap, though I should write that post soon.

Monday's trip, depression, and a pinktober article

I was just too tired to post the results of my day at UAB yesterday. That trip wears me out - not just the 8 hours in the car, but the tests and, frankly, just walking into the clinic. We hit the breezeway that leads from the parking garage to the clinic and I felt the anxiety start creeping in. I felt the shakes, the tears, the "nonononoIwanttogohomepleasedon'tmakemegointhere" voice start. It's an act of sheer stubborn will (and clinging to Andy's hand) that allows me to keep putting one foot in front of the other in that place.

I had my MRI, and let me tell you, IT HURT. Remember my recent trip to the ER and diagnosis of costochondritis? Apparently even though my sternum doesn't hurt constantly and it doesn't seem to be taking the predicted 6 weeks to resolve, lying on a bed that has holes to drop the boobs into, meaning a hard thing between them is where your weight goes, isn't as fun as one might imagine. When it was time to get up, my sternum, chest and back hurt so badly that Andy had to come in and help me get dressed. I was in tears not only from the pain, but also because I'm sick of this. I'm sick of being screened for cancer (apparently having the most aggressive surgery for cancer that was caught as early as mine exempts you from nothing when it comes to screenings), sick of it hurting, sick of it causing such horrible anxiety.

The good news is that the MRI ruled out any recurrence. I really do "just" have costochondritis, and I'm good for another 6 months. I have two small cysts, one in each breast, that haven't changed (I didn't even know they were there), and are of no concern.

Yesterday I had the MRI on my shoulder; I'll get those results Monday when I see my orthopedist. There is a chance it's related to my mastectomy, as my other shoulder was when it was impinged.

So, if I have no recurrence and my shoulder problem is not cancer, riddle me this: why am I depressed? Why am I still close to tears (though at least the anxiety has dissipated), having weird dreams, and feeling so down I can't be bothered to accomplish much?

I'll tell you why: because as I said above, I'm sick of it all. I'm sick of finding more long-term issues that nobody told me could happen (hello, shoulder, I'm talking to you), I'm sick of the anxiety, I'm sick of the drive to UAB, I'm sick of pinktober, I'm sick of knowing that there are those who really wish I'd just move on and not mention having had cancer. I had it, I live with its aftermath, and while at some point it may move to a different part of my brain, right now it's really close to my mouth and out it comes. It's not my job to keep others comfortable about my cancer.

So, that's where we are right now. Today I'm going to have a treat day: I'm going to Sephora (oh, someone protect my wallet), then to get a manicure, then to Wednesday knit night, which I've missed since August.

I leave you with this article: Why #Pinktober consumerism makes this breast cancer survivor uneasy - I didn't write it, but I could have, right down to the disbelief and, yes, guilt, that comes with not needing radiation or chemo.