Seriously... Lymphedema too!!!

Episode LXXXI - Doctor says you're cured but you still feel the pain

After my summer family vacation where I probably partook in too much sun & fun I began to feel like my armpit was swelling more than normal. I mean I was constantly having to adjust my sports bra because of swelling. I wanted to ignore it because I did not notice any swelling in my arm, but eventually the other side effects became to bothersome.

The numbness and tingling sensation in my hand continued. Besides weakness in my right arm I found an inability to reach properly. I mean holding the cell phone to my head became challenging. It was annoying! So even though I tried to avoid calling the doctor, I finally had too.

Of course the oncologist was like, Lymphedema. I figured that, but I was really hoping not to deal with another issue. I mean really - another issue. Come on!!!

Find out more about Lymphedema - Click Here.

Today was my scheduled appointment with a therapist to help manage swelling and side effects caused by Lymphedema. Since it was a late appointment I had enough time to fit in a fun afternoon with my daughter. It's summer and I am busy - I have fun to do. Darn arm... you won't stop me.

We went to the local botanical gardens, which hosted an Alice in Wonderland theme. We made our way through a rabbit hole, door maze, and even got to be Tweedledee & Tweedledum... guess which one I was going to be!!!

Summertime Girls Day...

Afterwards I made my way to the therapy office and began recalling my memories of physical therapy from my childhood. When I was younger I had multiple knee surgeries which required physical therapy. Yuck! I imagine pulling and exercises and painful hard work. I have horrible memories of it. I was young. It hurt. I really was not looking forward to the appointment. Yuck!

As I sat there thinking "Yuck!" I actually read the sign on the door. What a d'oh moment... Apparently that physical therapy appointment I had was actually for occupational therapy. I have so many medical appointments I don't even know what they are for any more!!! On the positive, it was not physical therapy. Plus, I showed up at the right place at the right time (not always the case, just ask the dentist or the imaging center or the... well you get it).

It's OT not PT?!?!

The appointment consisted of discussing all my symptoms which were common signs of Lymphedema. Then I laid down and she marked spots all up my hand and arm with a marker. Then she measured around the marks on both my right and left arms. Those measurements would help determine the amount of swelling I had. While I thought my arms looked the same size she said that swelling was not always noticeable with the eye. Basically, that unless I had tiny arms I may not be able to tell. And unfortunately, I do not have tiny arms!!!

So, I spent an hour getting my arm measured and having a fun conversation. The therapist was hysterical and we really hit it off. I think I am in for some interesting conversations during my treatments!!!

In my head...

I have to laugh... I mean I barely had any lymph nodes removed and I got Lymphedema. I guess I should be thrilled that more were not taken, as it could be worse. It is kind of funny, come on, if you think about it... it's funny!

Once again, I am thankful for my twisted sense of humor!!!

Next week I actually start OT. Who knows what that will be like?!?! From what I gathered it will be nothing like PT and for that I am extremely grateful. I get to undergo something new... It seems my cancer journey keeps giving me new experiences.

“Experience is what you get when you didn't get what you wanted. 
And experience is often the most valuable thing you have to offer.” 
- Randy Pausch, The Last Lecture

Episode Reference: No one is to blame, Howard Jones song

Let's just say, it's a boobie massage

Episode LXXXII - She's lump. She's lump.

I had no idea what I was in for regarding Occupational Therapy for Lymphedema. I quickly found out that the lymphedema treatment was essentially a massage that helps to redirect the lymphatic fluid to flow in the direction of the heart. Basically, the massage would help the fluid get out of my arm and back into circulation. And it was not a typical massage.

The lymph system is located directly under the skins, so the therapist barely does more than to move the skin. Honestly, the small gentle movements barely qualify it as a massage. It was essentially a gentle touch therapy. However, I call it My 1 Hour Boobie Massage!!!

Something I never would think I would say...
Boobie Massage.

When I first got into the room I took off my shirt and bra. Seriously, after everything I have been through I am wondering who hasn't seen my boobs?!?!

Then I laid down on the massage table and place a light cloth to cover my breasts. Not that it would matter if they were covered or not since the massage therapy was centered around my arm pits, chest, and arms. I mean the therapist was going to be touching and seeing all of my chest anyway. Take a number... my boobies have been seen by just about everyone.

Light touch down the neck... 
(The massage pictures are not me.)

The therapy usually starts with small movements (just a slight tightening of the skin) under chin and down my neck. Afterwards she works my collar bone area out towards my shoulders.

Then the focus is on my good arm pit, or left side, toward my heart and down my sides toward my pelvic region. She starts with my good lymphatic side first... gets the system going and hopefully ready to help aid the other side not working correctly.

After she stimulates my left side it's time to get the bad, or right, side moving. She similarly works under my arm pit towards my heart and my pelvic region. And I will then flip on my side so she can work down my back too. Afterwards, I turn back over and then the therapist gets to really know me... intimately!

Rubbin' the Boobie Area...
(Again, not me... but don't they look relaxed)

Time to focus on my chest. The therapist works on the build up of scar tissue around my many scars and radiated breast. I have a large scar down my right breast from the lumpectomy, across my chest for the port, under my arm pit in multiple spots for the axillary lymph node dissection/drain tubes, and some hardening from radiation under my breast. She works hard to break up all those lumps, tissue, and general mess irritating me. See, I told you... a Boobie Massage!!!

Most of the time during treatment my right breast is being worked on. After she gets it good and massaged the therapist starts to work the lymphatic system down my arm. She will massage it until she gets to the tips of my fingers. Each massage movement was so gentle that I often wonder if something so simple could work.

My arm is definitely showing lymphedema swelling, so I get two Boobie Massages a week. Not only that, I am suppose to do the same massage to myself multiple times a day. Really... I was just given a prescription to touch my boobs!

In my head...

A note to all women about to go to their first OT appointment for lymphedema treatment for their chest or arms, if at all possible leave your children at home. My very first appointment I brought my daughter. I was not aware that I was going to get naked and felt up in front of her. Thank goodness she was so wrapped up in the technology I brought that she was completely unaware. One of those classic moments in life - making memories here!!! 

It seems that I have a boob theme going on right now. I cannot seem to get away from clinical touching. However, I am always surprised at how tired I am after treatment. I guess an hour of rubbing an area that feels bad can wear a girl out. I think I should be rejuvenated and all energized. Apparently, all that focus on my chest can be exhausting. The massage really does work and gets the lymphatic system pumping - it seems to be helping the swelling.

I am lucky that I really enjoy my therapist. She cracks me up! I think I am lucky, as it should be important to enjoy the company of the person who is massaging your boobs!

I am learning so much more about lymphedema. Looking for tips, then check out...

“Healing is a matter of time, but it is sometimes also a matter of opportunity.” 
- Hippocrates

Episode Reference: Lump, The Presidents of the United States song

Swollen Adventuresss

Episode LXXXIV - just when you think that you're in control...

Attitude is everything. Attitude is everything. I will continue to be positive... even when things are difficult... I will...

I am still the half full cup...

It seems that activity, heat, and general living can create havoc with my lymphedema. I live in the south... with hot, humid summers for crying out loud. I like to paint. I like to type. I like to be busy. Ok, I like to do more than I should after cancer treatment (such as ripping up the old flooring to lay down new flooring), but I am an active person. I am a lot less active than I used to be, but I want to do some of the things I used too. Plus, I am right handed and my lymphedema is in my right arm and hand. Cruel irony!

I think I might have been a hand model...

So last week I went to the medical supply store to get a compression sleeve. Apparently I have the biggest upper arm in the world. Ok, that is an exaggeration... but they made me feel like I was freakishly disproportionate. My upper arm is more swollen than my hand. I know... my lymphedema is worse in my upper arm and arm pit area. I cannot have such odd dimensions that a general sleeve will not fit me!?!?!

Because of my freakishness they said I would have to have a custom sleeve. I was shocked because online there are companies that carry my dimensions (I know because I looked it up after I got home). Of course I was more annoyed because an off-the-shelf compression sleeve is around $100-$150 and the special ordered custom sleeve will start somewhere in the $200s. That does not include the price for the gauntlet (glove). Nothing with cancer has been cheap!!!

Even though I need a more durable medical sleeve I felt less rushed to buy it since my OT ordered a compression sleeve that I can wear on a general basis. So, I will wait to see if the ordered one fits before I feel bad because I have one of the only lymphedema arms in the city that is so unusually swollen that an off-the-shelf sleeve is impossible to fit and they will have to do a rare custom order.

Wrap this!!!

Today I was back to my OT getting my bi-weekly massage (boobie massage) when we noticed my numbers were increasing. With the swelling now traveling more to my hand it was time to get a compression wrap. No more waiting for the medical supply store or the ordered sleeve. She was going to wrap my arm like a compressed mummy.

While the wrap looks like a typical bandage wrap, it is different. The pressure garments are made of fabric designed to put controlled amounts of pressure on different parts of the arm to help move fluid and keep it from building up. The wrap starts at the hand and works up towards the arm pit. Each layer progressing upwards. And each layer is tight, but not cutting off circulation. Underneath and/or on top a layer of compression material is placed for additional compression.

Wrap that arm!

My officially wrapped arm is snug. I mean it is tight and hard to move. I now realize the reason the wrap might work so well is because it limits your usability of the limb. I know that they encourage and you are suppose to use the wrapped arm, but everything was tougher to do. I mean I was shifting everything to my left hand from driving the car to answering the phone to eating my meals to bathroom care... left hand please.

Compression on! My poor swollen giant hand!

However, by the next morning my upper arm swelling had gone down a little. My hands still needed some relief so I gave myself another lymphatic massage and then re-wrapped myself to hopefully keep the swelling away. I was told to keep myself under wraps for the remainder of the week and all weekend. I am going to get tired of my limitations really quickly... someone grant me patience!!!!

Look the compression is working...

In my head...

So, I am learning that the more I use my right arm, especially in the heat, the more I swell. I actually have limitations... argh! The frustrating part is damage to the lymph system cannot be repaired. The best things I can do is continue the treatment given to control the swelling caused by lymphedema. The goal is to keep other problems from developing or getting worse... and hopefully I can learn to actually manage it long term.

Things that can make lymphedema worse: heat/sunburn (weather affects me), lifting too much weight (even small weight), repetitive motions (vacuuming, mopping, raking, etc), small cuts, shaving, warm showers/baths/water, undergarments (aka my stupid bra), and definitely NO blood pressure, IVs, needles in the arm!!! Learn more about preventing flare ups - Click Here.

I think I am going to have to really gain a lot of patience. I have daily health requirements that will last for a long time... I am suppose to give myself multiple lymphatic massages. I am suppose to wear compression garments. I am suppose to take medicine. Dang it... I have to be responsible for my health! I am inherently lazy about self care!!!

Every one who knows me is laughing at that last comment because they know how true it is!

“The strongest of all warriors are these two — Time and Patience.” 
- Leo Tolstoy, War and Peace

Episode Reference: Here it goes again, OK go song

Just when you think that you're in control,
just when you think that you've got a hold,
just when you get on a roll,
here it goes, here it goes, here it goes again.

Lymphedema Update

In case you haven't read in my previous blog posts, after I finished treatment I realized I had some unusual symptoms in my right arm. I did not immediately notice the swelling, but later found out that I did have swelling and lymphedema. Lymphedema can occur after breast cancer treatment and of course why would it skip me?!?!

Since lymphedema has no cure, I have been managing my symptoms diligently. I am going to Occupational Therapy twice a week - or - what I prefer to call my boobie massage (even though it is way more than that). I have been doing my own massages. I have been learning what triggers my swelling. It is another issue that I have to live with, so I am learning how to do it with my crazy up-beat attitude.

Learn some of my Lymphedema Tips - Click Here


As for having lymphedema with style, I have gotten a few medical compression sleeves & gauntlets. Currently I have to wear compression garments during my waking hours. Ok, I should wear them when I sleep but sometimes I opt not to (a girl needs a break every now and then). So I bought ones that are exceptionally comfortable... and fun! There are so many patterns and alternatives to the standard one color sleeve. I could not just settle for one. Plus, I have to wear them daily so like underwear you don't just have one pair!!!

Each one looks different and I have gotten so many compliments (and looks) from strangers. Usually people believe I have gotten a very large and detailed arm tattoo. I get the cool look of a tattoo, minus the hours of pain and permanent image. Now I get to choose whatever sleeve matches my outfit and I can change it up as I want to!

A Henna based design...

A colorful design but does not fade...

And one that is a medical alert as well as just funny to wear!

All of these sleeves I am wearing are from the same company, LympheDivas. They provide so many options and patterns that I had to share. Yes, the standard beige and black sleeves are out there (they have pink too), but if you have to wear something WEAR IT with style!

Check out LympheDivas - Click Here

3 S's - Swim, Sleeve, Shoes

Episode XCIII - swim until you can't see land

Between the joint/bone pain, the lymphedema swelling, and the nervous system issues I felt like I was unable to do anything. Everything hurt. Everything was hard. I had to do something... some type of exercise.

After discussing it with my OT, she recommended swimming. With an exercise option in place and my family getting me a Y membership for my birthday I was off to the pool. For some reason I had totally forgotten about water exercise. I think I mentally blocked the idea of swimming because it would require me to get into a swimsuit in front of other people. However at this point do I even care??? NO!

Watch me attempt to swim!

I must have forgotten all my early years on the swim team and how much I enjoyed swimming. I love the water. How could I have forgotten that?!?! While I knew I wasn't going to be doing butterfly or backstroke yet, I was able to at least get in the water and do some form of exercise. I had to modify my swimming to make sure that I do not raise my arm above the water. So my freestyle was odd looking, but I could still do breast stroke with ease. Even in the dreaded swimsuit and knowing that I probably looked ridiculous... who cares... I loved the water.

There was one moment when I finish a lap and turn around. 
I am completely submersed and nothing hurts. 
Seriously... nothing hurts. It was an amazing moment.

It was also time for me to get a more durable, stronger lymphedema sleeve and gauntlet. After being annoyed at my medical supply store fitting session where I felt they implied that I supposedly have a disproportionate arm... even for a lymphedema patient... which I find ironically impossible, my OT had ordered some for me. Apparently, I can fit into a Solaris ExoStrong sleeve... so I will promote them for other disproportionate lymphedema people out there...

Check them out... click here.

The sleeve is made of a thicker material that provides more compression. I tend to wear my Lymphediva products on my normal day, as they are softer and less compression. However I do need an option to have more compression and these products are great for when I am do more strenuous activities. Which basically means I rarely have to wear it these days!!!

All joking aside, it is nice to have both options. There are days when I need it. However, the compression garments are expensive... very expensive. We are talking over a hundred dollars for the set... and you have to have multiple pairs. You wear them all day. They can be washed, but it is like underwear... would you only like 1 or 2 pairs of underwear to wear all year?!?!

Speaking of spending money... thank goodness I have a mom who is willing to spoil me. When she visited me recently, she apparently felt that I was not wearing good shoes. Ok... even if most of my shoes have been in my closet for years they were still... sort of... maybe... usable. After she donated like fifteen pairs of shoes (some never warn... aka heels) she took me off on a shoe shopping spree. And not only did I get shoes... I got Eccos...

It's like I am walking on air...

She gave me the big-spending-make-my-child-feel-better shopping trip. Thanks mom!!! Normally, I cannot stand to shop. Really... boring. However, I will say that I was not complaining on this shopping trip. I am now set for summer, fall, and winter. Loving my shoe options now!!!

In my head...

I just keep moving forward and trying new things to feel better. I am really willing to try various products and options. Like a variety of different compression garments, shoes, and other things to try and improve my general well-being.

I wish I had thought of swimming sooner. And I recommend it to so many people I meet now. It is the one time I truly feel good. The water is so calming and without the impact that normal exercise puts on my body I can actually do something. It is a small something, but it is something!

“The simple everyday experiences 
become the doorway to new thoughts and inspirations.” 
- E.A. Bucchianeri

Episode Reference: Swim Until You Can't See Land, Frightened Rabbits song

Oh lymphedema... you pain in my arm!

I was never warned. No one talked about lymphedema. I never really understood what it truly was until I was diagnosed. I am not even sure all my medical providers understand it. How do I expect others to know? How can I help others understand it?

It is every second of every minute of every day...

There is no break from it. I am always having to manage it... to hope that I have done enough to prevent a bigger problem. I have to think about everything I do. The simplest things can create the biggest problems.

I cannot escape it or take a vacation from it. I will never get that break.

There is no cure.

It is that simple. That is what people do no really know about lymphedema. That it is a lifelong condition. That it does not go away. People do not want to hear that. They cannot believe that. They want there to be a solution... a fix. They want to believe that maybe I am wrong, that I do not know what I am talking about. There has to be a cure.

I live managing and preventing.

My daily life is affected, even if I wish it was not. Small actions cause big problems. Each day can have its own unique set of problems. The daily struggles. The daily swelling. The daily discomfort. The daily pain. The daily numbness. It is an unfair reality that does not end.

My life is full of triggers, things that set lymphedema into affect. There are so many, so many things that make my body fight against me. I have written a long list of tips, because I have experienced so many triggers causing swelling, numbing, and pain. I have become hyper-aware of my arm and the things surrounding it.

Things I never even thought about, things that were automatic are suddenly obstacles. Holding my cell phone to my ear, driving my car, typing on the computer, preparing dinner for my family, and so many things that would seem simple and standard have become challenges. Even cleaning up from going to the bathroom is challenging.

I overcome small painful hurdles everyday and I do it silently.

I walk around with neuropathy and pain. I can not express how challenging everything is while I am doing it, as it would be like a non-stop chatter of annoying pain complaining. I keep it to myself. I smile. I continue on hoping that my actions will not cause bigger problems for myself.

I have had to learn when to stop. My ability to do things has changed. I cannot push through the pain. It is not that simple. I have to stop, not because I want to... not because I am lazy... if I do not stop I will cause my lymphedema to go to a place where I cannot manage it on my own.

You might be thinking... lymphedema... what is the big deal, you're just swelling? Sure, it is obvious since lymphedema even has the word edema in it, which means swelling.

Swelling is one aspect of it. I am not sure that people are aware of the pain that comes with edema. Swelling hurts.

The lymphatic system is a network that coordinates the immune system. Lymphedema is when that is not working properly, there is a blockage. The lymphatic system is not functioning properly. It is more than just swelling. If untreated lymphedema can cause serious problems, tissue hardening, and other chronic infections/illnesses.

In my case, lymph nodes were removed and a lot of lymph nodes were radiated during my breast cancer treatment. It is a broken, blocked scarred lymphatic mess.

No one really talks about preventing secondary lymphedema after mastectomies or lumpectomies, but there are things to help (exercises, compression sleeves, general arm care). No one talked to me, until I began having range of motion problems, shooting pains, tightness, and general discomfort. It was already too late.

Unless I want additional complications and costs, I have to manage my life. 

I live daily in compression garments. And while they may look cool, cause I am down with the expressive beautiful fashion garments, they are made for compression. It is like someone wearing arm & chest spanx non-stop without ever getting the freedom to just let it go. I live in restriction.

The small lymphedema annoyances are tolerable, but when my chest and armpit region begins to hurt I know I am doing too much. I feel the beginning of the pain in my chest and arm. I see the swelling pockets throughout my trunk and forearm. I have long lymphatic channels in my breasts, armpit, and arms that are painful. I have gone too far. It will get worse. My body is alerting me to stop.

I have to compress every day. I have to wear these darn sleeves & gauntlets. I have to strap myself into a giant blue arm wrap compression machine that squeezes and squishes me. I have to give myself lymphatic drainage massages. I have daily health measures to make sure I do not get out of control. But, all I want to do is be free.

At the time I need to wear these restricting prevention tools, I just want to take them off. I want to let it swell. I want to not feel the constricting discomfort. I just want to be.


I want the freedom to go without the garments. I want the freedom to wear a normal bra again. I want the freedom to wield my arm in crazy motions and without pain. I want the freedom to do the things I once did.

Freedom is not an option, at least it is not now. I have to wear my garments. I have to feel the confining pressures to prevent a greater problem for myself. I am held captive by my own body.

Breast cancer is a taker. It takes from you. It continues to take. Financial. Health. Lifestyle. Physically. Emotionally. Mentally. Cancer takes. Breast cancer is also a giver. It gives a lot of unwanted things.

Lymphedema has changed my life. 

Besides taking away my normalcy, it tries to take more away from me. I am an artist. I love to draw and paint. It is one of my passions. I struggle to do what I love. I fight my own body to do what I love. I will take the risk of swelling to do what I love. I want to paint unregulated, I want back those long hours of uninterrupted creativity. Instead, I monitor myself and paint for a short amount of time and stop. I am doing what I love, but I am doing it on lymphedema's terms.

I have found a small vocal online community of other lymphies (those with lymphedema) who like me are also trying to educate the public. We all come from different backgrounds and different places. Even our reasons for having lymphedema are different, but we all understand the frustrations. We all know the importance of sharing our stories of living with an uncurable illness.

It is the simple fact that if we can get the world to understand then maybe it can change. Maybe we will have insurance cover these garments we wear or the medical devices we need. Maybe the awareness will lead to finding more research or understanding of this lymphatic illness. Maybe even a cure!

My arms may not always look swollen, but beneath the facade lies an constant tight, numbed, and pained arm and trunk. It is something I fight with every day. It is something that I do my best to contain. However, I cannot contain the desire for more awareness and support of lymphedema.

I want awareness for anyone facing breast cancer to know how to prevent lymphedema. I want any one who will have to remove lymph nodes to realize the risks. I want understanding and compassion for people born with lymphedema. The more awareness there is the more reason for change.

My story is one that I hope will help others find comfort in knowing they are not alone or as a source to educate and prevent secondary lymphedema. I want all types of lymphedema to be heard, understood, and researched so that it can change.

I live with the constant reminders of breast cancer. I live with the constant disabling aftermath of breast cancer. Secondary lymphedema is one of my breast cancer war wounds and now one that I have to continually fight.