My story with lymphedema

Hello!

I am a Hungarian artist: singer, dancer, photographer and writer. A forty-something year young woman, living out of a suitcase and staying in Prague, Czech Republic for right now.

In January 2008, I had a surgery for cervical cancer – in the hindsight now I am sure that it was unnecessary and I could have healed it completely with alternative methods. But that time, I didn’t know any better.

Although a hysterectomy (=removal of the uterus) might have some “positive side effects”: it is such a blessing not having a period since all those years, and I will not have menopause either, yay, – but I was also not told the possible negative side effects of such an operation, of which one is a condition called lymphedema (=a disfunction of the lymph system when the fluid can’t flow properly and that will cause swelling in the affected body parts such as limbs).

For the first year or so after the surgery, my ankles and feet were indeed swollen and my legs a little bit too, but my doctor only said: “Watch out so that they don’t swell too much” and suggested that I would massage it or go swimming often. He didn’t tell me anything more about lymphedema, only that swelling of the legs are common after such a surgery. Anyhow, I was saved from cancer. So I was fine with it.

I lived my life actively as before: 6 weeks after the surgery I flew back from Budapest to Stockholm where I was living with my then husband and was back on stage, singing. That year and in the following, I was busy with singing and dancing performances in Hungary and in Sweden. You can see on the pictures below that although I was slim, every once in a while one or both of my ankles and feet would be swollen.

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In pink. Rehearsal for a huge show with the folk dance ensemble where I used to dance when I was a young girl. Now here we are all in our forties, still rocking 🙂
Human Rights Gala, Stockholm, 2008 December
Human Rights Gala, Stockholm, 2008 December
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In blue. 50th Anniversary Gala of Bartok Folk Dance Ensemble. Budapest, 2008 November. Didn’t give a damn about my very swollen right ankle and foot, dancing was SO much fun!
Sitting on the Margaret Island in Budapest, 2009 April. Photo: David
Sitting on the Margaret Island in Budapest, 2009 April. Photo: David. This time, both of my ankles are huge, I could hardly press them into my favorite wooden clogs.
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Before or after a festival concert in Hungary, – left leg pretty, right leg, not so… July 2010

To give you the full picture, I do have a family history of leg issues: my mother was a hair dresser which meant a long hours of standing and she had lots of problems with her veins. Her mother had raised 8 kids by herself during the war in great poverty and made money by sewing – that’s endless sitting. Both of them had to wrap their swollen legs and wear special shoes and compression garments.

As a small child, I had to wear inlays for my flat feet and sometimes I had such a huge pain despite of elevating my legs in the bed and wrapping them with wet towels that I would be laying there and cry.

That period fortunately passed as I grew up a little, and from the age of ten I started dancing. I was already on stage at the age of five as a ballerina, but I did not pursue that for long. However, for fifteen years, between 10 to 25, Hungarian folk dance was my life (often with ballet as a warm-up), very heavy trainings and performances and I LOVED it so much. So did my legs! Apart from the occasional and inevitable sore muscles and other pain that the extensive physical work plus dancing shoes and boots can give, my legs were doing great. They have always been a little bit maybe thicker than “normal”, compared to other girls as you can see it on the next picture, but that’s just my bone structure.

On the right side: Serbian folk dance in my hometown, Kazincbarcika in Hungary, 1982.
On the right side: Serbian folk dance in my hometown, Kazincbarcika in Hungary, 1982.

Also, I spent a lot of time in the waters: we lived just across the street from the outdoor swimming pool in my home town and I even used to be a competitive swimmer for a short period.

I stopped actively dancing in 1992 when I was pregnant with my son – and now I am not sure what was the main factor that triggered serious swelling in my legs: the pregnancy itself or that I was not dancing any more, only at very rare occasions.

Hm… Now when I come to think of it: I never took up dancing again, even when I could have gone back to my group because my baby was old enough. And even after giving birth and physically there was no more reason for swollen legs, my legs would still give me trouble, they were huge sometimes even when I was super skinny. Will have to look into this thing with dancing a bit more – perhaps that’s a key?

But there were times when my legs looked good, I remember getting compliments when I wore shorts and heels, and there were a few periods also after my cancer surgery that I can recall when they looked really, really great, no any swelling whatsoever and I could happily show them off. A few months in 2009,

Dancing with old Bartok dancers, just for fun, Budapest 2009
Dancing with old Bartok dancers, just for fun, Budapest 2009. For a couple of months, my legs were as happy as I look on this photo!

and May-June-july of 2014. This was the time when my legs looked the best ever – and silly me, I have no photos from that glorious period! But I was rocking pretty sandals and sweet and sexy mini skirts and dresses, and sure, my boyfriend loved them, too.

January 2014 in my hometown, feeling and looking pretty. A few months later my legs looked even better than this!
January 2014 in my hometown, feeling and looking pretty. A few months later my legs looked even better than this!

Then it happened, almost overnight: without any warning sign, my right leg started to swell from my feet up to the thigh, and within a few days my body looked very asymmetrical. Searching the internet, I diagnosed myself.  Then I went to a lymph specialist who confirmed that I got secondary lymphedema, due to the lymph nodes having been removed during the surgery back in 2008, from the right pelvic area. Wonderful.

On the following photos, my left leg is still pretty but with my right leg blown up, the whole picture is not that gorgeous, and gradually, I also started to put on weight, from my waist down:

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After a concert – still could fit into my jeans somehow…
November 2014, my left leg was still normal here...
November 2014, my left leg was still normal here…
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Still in size 36 clothes
Lymphing the streets of Prague in the music video Ej Lasko, Lasko. Photo: Bob Yothers. January 2015
“Lymphing” the streets of Prague in the music video Ej Lasko, Lasko. Photo: Bob Yothers. January 2015

During the spring of this year, 2015, my left leg became also swollen, within the course of maybe a week, and again, without any warning sign.

Actually, there was one thing in the very days when when my left leg started to blow up but I can’t tell which was first, the swelling or this: a lymph node in my groin became suddenly huge and very hard: a few days later it was scary to see it with the ultra sound, they measured it to be 2.8 cm (=a little bit more than 1 inch). It was big for another week or ten days and very visible, then it simply diminished by itself and now since a month or maybe longer, it is back to how it had always been.

That’s the bad news about having now two lymphie legs; and the good news – if there is any in this – is that with both of my legs thick, they now look more “normal“, which means simply more symmetrical, in this case, as if I was “just fat”, down from my hip. And it is easier to choose pants and shoes.

Another good news is that according to the recent laboratory test results, my cancer did not come back!!! After 7.5 years, I am still cancer free 🙂 (It is an important point also for the reason that one possible cause of this kind of lymphedema can occur because of a tumor.)

A little ballet :-)
A little ballet 🙂 Left leg in the front.
More ballet, right leg in the front
More ballet, right leg in the front

The even better news is that I did this little ballet in the second week of August 2015, after that I had implemented a few lifestyle changes and I could see positive results already within a few days! My legs feel much lighter, it is easier to move and they are less swollen than let’s say, were in July. I will tell you more about what changes I am experimenting with, sometime later when I have even more results.

As of the date when I am writing this page, last day of August 2015, the only treatments for lymphedema I have had so far were wearing compression stockings all day, plus those few lifestyle changes that I just mentioned briefly, and this is where I am right now:

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You see, I am not perfectly back to my mini skirt shape yet, but a few weeks ago I wouldn’t even dare to put this one on, let alone taking a photo! (and next time when taking a photo, I will remember to remove the keys from my pocket.)

So I am definitely progressing, and despite of that I am short of means for getting proper treatment (standard massage and wrapping therapy), and despite of that according to the medical consensus, lymphedema is not curable, and despite that in these few past months I had been told million times that “you can’t do much about it”, “you have to live with it”, “you can never heal it”, I was even ridiculed quite a few times for mentioning some of those lifestyle changes that have already been proved to be beneficial, I keep true to my ever optimist self and keep believing that I can not only treat my legs but cure them.

I am positive especially now that I have the testimonial of a few others who had already done it, healed their lymphedema and got rid of it for good! Or a few others who have remarkable results within a short time, with methods that are not used yet in standard medicine.

When I created this page in the end of July, just  5 weeks ago, I wrote this on the About page:

“I set on the mission to find out: is it possible to be lymphedema-free, once you’ve got it? And if yes, how?” 

Today, knowing a little bit more, I know that it is indeed possible, the only question is how exactly. And for that, there are already some very promising answers.

Yes this sounds very bold, and I am not a medical doctor or licensed practitioner of any kind, I am not making any claims that I can cure your lymphedema (see my Disclaimer), I am simply following the footsteps of the very few who also disagreed with the common belief that this condition is incurable, and already had success, and trying out things for myself that maybe others not have done yet. 

All I can do is to cure my lymphedema, and if I have succeeded with that, inspire others to try steps for themselves.

I keep experimenting with methods I know from others that had been successful, and also with things that probably I am amongst the first ones to pioneer, and keep this blog as my journal.

If this journey is interesting for you in any ways, you are most welcome to join me; follow my blog here, share it, if you find something useful. Maybe you will have a suggestion for partnership.

Let me finish this introduction with a quote from Plato:

“The cure of many diseases is unknown to physicians because they are ignorant of the whole… For the part can never be well unless the whole is well.”

And another one from Seneca:

“It is part of the cure to wish to be cured.”

Be happy and healthy,
Andrea

Andrea GerakAndrea Gerák (also spelled as Gerak) is a Hungarian artist, mostly known as a singer. She is also photographing, dancing, writing, and forever learning through her journey in the world, living out of a suitcase. Her attention turned to healthy living after a cancer surgery in 2008. Proud mom of a big boy.

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9 thoughts on “My story with lymphedema

  1. Wonderfully written! I’m encouraged that you’re having positive results from the changes you’ve made. It’s all about learning what works for you and staying with it. Looking forward to reading more!

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  2. Andrea, you are such a positive nature! And you managed to stay beautiful and sexy, despite this condition that would have alienated a less blessed personality.
    You wrote that you have already applied some life changes that look like they work already. Great! I hope the results will continue and be permanent.
    I have much faith in our body’s power to self-heal, if left alone and spared of the effort of digesting our regular (and not too healthy Western diet). In short, water fasting!
    If you believe in alternative holistic medicine, read on-line about Dr. Fuhrman’s fasting method, or Loren Lockman’s raw food lifestyle and periodic detox by water fasting. If you intend to do more than a week, a supervised (by a specialist) fast is recommended.
    Please keep us posted.
    Good luck!

    Liked by 1 person

    1. Dear Julia, thank you so much for your encouraging words! They are such a breeze – in the lymphedema community itself I got already so many negative comments about that one cannot just heal his or her own body…
      Yes, I believe in holistic medicine!

      Interesting what you write about water fasting, because one of the steps I am doing now that are bringing good results is drinking water with a simple system (not fasting though), but I will have to check out these two names you recommend here.
      Thank you again, and I wish you good health too, Andrea

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  3. I too have lymphodemia in one leg, abdomen and groin from survery due to cancer. What has helped me reduce it almost nothing is…. i walk every day. At least a mile. I try to keep active all day. The most important thing is I drink 80+ ml of water every day. Dehydration makes it so much worse!!! I drink detox teas. I use lotion with citrus oil extracts. I drybrush (amazing, look it up) you are an inspiration and it’s high time women start talking about this!!!!!

    Liked by 1 person

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