Learning to Live with Lymphedema

LymphedivablogWhen the title of this Blog Post entered your Inbox, let’s face it, your heart did not go pitter patter with excitement.  Please try to stick it out!!!  You will learn something and I will attempt to give you a few laughs along the way!   You and your Lymphatic System have something in common–   misunderstood and under appreciated. There are 500 to 700 lymph nodes in the body. Who would think if you have one or a few of those removed, in my case 14, it could cause so much trouble?

My Lymphedema was under control until I picked up those 3 plastic bags of groceries with my impacted arm and then my POOF of Lymphedema came back with a vengeance. Now you cannot yell at me because admit it, you have done it and later regretted it even if you have no chance of Lymphedema.  Who wants to make 3 trips from the trunk of the car if you can do it in only 1 trip. And, of course, I had about 50 pounds of items in those 3 sacks because I tell the checkout girl, “put all you can in one bag.” I HATE IT when they put a box of jello in one bag, a bunch of bananas in the next, and on and on until you have about 20 bags with nothing in them, and you get home and you wonder how you can make plastic monkeys for the kids out of all these bags you have sticking out under your sink.  Then the environmental guilt hits you, and it is a downward spiral from there.

Starting with that one mindless “carry the heavy groceries all at once” moment, my arm started swelling up, and then my hand, and then my fingers until it was larger than it had ever been. It really scared the you know what out of me. Suddenly, all I could remember was the only woman I knew who had a Mastectomy when I was a child. She had one huge arm and one smaller arm, and she always wore sleeveless tops. Suddenly, I felt great compassion for that woman.

Yolanda is an inspirational Stage 4 breast cancer survivor from my internet support group. She and I were discussing Lymphedema and our latest flare ups. Very reluctantly, Yolanda and I are realizing that we are dealing with a chronic condition that changes our lives forever.  It is just now dawning on us how much daily time and attention Lymphedema requires.

My Lymphedema first showed itself during Radiation treatment which is common. The lymphatic system is compromised because the onslaught of radiation overwhelms the system. An occurrence can happen  20 years or more after surgery!  Lymphedema may not be present and then one wrong move and PRESTO!

For those of us at risk for Lymphedema things that cause flare ups in addition to heavy lifting is anything that  requires repetitive motion like shoveling snow, sweeping with a broom,  gardening, exercising, mopping, raking, any other kind of shoveling like dirt or digging,  vacuuming, typing on the computer, extreme heat or extreme cold, and injuries to the arm of any kind.     This is why you must wear a compression garment when doing those things.  Many women find it necessary to wear a compression sleeve every day.

YOU CANNOT HAVE any needles – blood tests, shots, or blood pressure taken in your arm at risk.  This is imperative!  I also heard from one woman who got Lymphedema after a manicure!  Even insect bites can flare up Lymphedema!

When flying in an airplane it is ABSOLUTELY NECESSARY that you wear a compression sleeve or wrapping if taught to you by a Lymphedema Specialist. One of my radiation nurses was a 20 year breast cancer survivor.  After 20 years, she figured the risk of Lymphedema was over, so she took a short 1.5 hour flight without a compression sleeve. When she landed her arm was 3 times its size and she has had to deal with Lymphedema ever since.  Another gal I met at my Oncologist’s office had the very same experience 3 years after cancer treatment – one flight without compression and bam!

All of this sounds rather ridiculous, doesn’t it?  I mean, come on, sweeping your front porch and suddenly your arm swells up for the rest of your life?  This all seemed outrageous to me too, even though I have been to two classes outlining the potential horrors.  I had to test it all out to see if  the crazy person who made up these rules was right! I hate stupid rules!   Well, guess what?  Whoever “they” is, was right.  I had to learn the hard way that it is necessary to follow the Lymphedema Rules.  UGH!

And if your closest and dedicated friends and family still ask, “How are you feeling?” they sure don’t want to hear about Lymphedema.  During your fight for life during cancer they sent you the cards, baked you the muffins, visited you,  took you to Chemo, bought you the gifts and listened to your complaints. My friend, Anita, even attended a Lymphedema Class with me!  Talk about above and beyond!  But, let’s face it, hearing about Lymphedema is about as exciting to them as I used to get when my grandfather would start talking about GOUT, and before I had a chance to yell, “No, Papa, don’t do it!” he was taking his sock off and showing me his big, swollen red toe!

This breast pillow/seat belt cover for the car has helped me so much.  I have it for sale in my online store for $19.90 with free shipping.  The compression of the seat belt caused flare ups in my Lymphedema – this helps!  Click on image!

 

BreastBuddy1

I am so fortunate to such a great Lymphedema Specialist, Mary Berg, with the Mercy Health System in Toledo, Ohio.   She has helped me so much with lymphatic massage, education, and the correct compression techniques for my hand, arm and trunk.  And oh yes, you can have Lymphedema on your body called Truncal Lymphedema which requires compression garments on your chest area.  More fun!  Mary knows who I am because she has had plenty of other patients just like me…non-compliant.  We don’t follow the rules and then come screaming and crying to Mary for HELP!!

If I would have had on my compression sleeve, I could have lifted those bags of groceries probably without incident. But I did not have it on because I was not expecting anything out of the ordinary (at least that is what I told Mary).  The sleeve pictured at the top is made by Lymphedivas.  Just so you know, the part that covers the hand is called a gauntlet.  They are certainly a lot cuter than plain and boring beige.  Lymphedema garments now take up a whole area of my closet.   I was recently fitted for a Juxtafit sleeve which velcros on rather quickly.  This is great to put on if you are going out to garden, going to exercise, or do anything that you need protection in a hurry.  The picture below is the Juxtafit and has to be measured by a professional.  I will admit, it is handy (no Lymphedema pun intended).  It isn’t my favorite thing to wear, I must admit.  It certainly is not every women’s idea of high fashion.  But it works!

juxtafit

Oh, one last very serious thing, Cellulitis — Cellulitis is a skin infection which can occur very easily with Lymphedema if you have an injury to your hand or arm. If untreated, Cellulitis can be deadly.  Even a small burn or cut can put you at risk. Therefore, as a precautionary measure, it is necessary to wear gloves while doing dishes and housework, yard work, or any heavy duty work that puts your hand/arm in danger. Insect bites can cause cellulitis so in warm months, it is important to wear insect repellant and sunscreen as even sunburn could cause cellulitis. I have to carry with me anti-bacteria gel and antibiotic lotion to apply immediately even if I get a paper cut or hangnail!  And at the first sign of any infection, I have orders to get to the hospital Emergency Room immediately.  And if you are traveling, in some cases it is  wise to have an antibiotic with you.    I don’t want to die of Cellulitis because I got a cut on my finger while peeling potatoes after I fought my way through to become a Breast Cancer Survivor.

If you are a Breast Cancer Patient or Survivor and have had even ONE LYMPH NODE REMOVED, get to a Lymphedema Class and find a Lymphedema Specialist immediately.   (update:  I have now heard from two women who have Lymphedema with no nodes removed!)   If your local hospital does not offer one, find a major breast cancer center which does.  It is worth the drive to find out the dangers and how Lymphedema can be avoided and treated.  It is absolutely IMPERATIVE that you learn about this chronic condition – how to prevent it, how to control it, and what to do if you already suffer from it.

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26 comments

  1. I wear compression sleeves when I fly, but other than that, I don’t wear them. Thanks for the reminder as I am also guilty of carrying heavy grocery bags all at once! I like the animal print sleeve…much cuter than my plain ones! 🙂

  2. You are just so amazing and such a gifted writer. You meaning goes right to the heart and exactly what I needed to hear. I had 30 LN removed after my lumpectomy on the right arm and now have exactly what you are talking about. Mary is also my go to person and the rosary does work and I keep feeling it will leave. It does and then returns-today when I lifted my granddaughter onto the potty I noticed it swell up. A sign to take care of it sooner than later. I go for my last Taxol, Ash Wednesday and will address it with the infusion nurse. Well, right now getting off this new computer my children gave me for Christmas–repetitive motion not a good thing which I learned from you also. Wow, keep up this amazing vault of information It really helps.

    God Bless,
    @

  3. GREAT post, Denise. I was actually excited to see it in my inbox! You covered so much here and did it so well!
    I was also non-compliant (okay, I sometimes still am). A good round of swelling usually jolts me back to my new reality, though! Sounds like this is true for you — and probably for many of us who still think we can do everything we used to do. 🙂
    Great section on cellulitis, too! I had my first run-in with it at the end of last may when we were on vacation & I had no out of state coverage. I didn’t know what it was — thought it was a terrible and painful sunburn (that only appeared on that arm (an arm that was fully covered and couldn’t possibly have gotten burned!) Lol!). And it did almost kill me. I was hospitalized a bunch and on a ton of antibiotics — it took ’til September to get it under control. Just had it again a few weeks ago (on vacation!), but knew what I was looking at this time, so I got started on the emergency antibiotics I brought right away and came out unscathed.
    You are doing everyone a GREAT service by posting about LE and especially cellulitis here. I hope everyone who has had lymph nodes removed takes the time to read this!
    Thanks, Denise!!!

    • Thank you so much! And thanks for reblogging this too! Oh my, you certainly
      did have the go around with cellulitis. SO SORRY to hear this, but so glad you
      are now carryng an emergency antibiotic! I appreciate your comments so much
      as you have so much to add! My best, Denise

  4. Reblogged this on cancerinmythirties and commented:
    Reblogging this post because I think it is full of terrific info.
    I have been meaning to write a Lymphedema and Cellulitis post since I started this blog, but Denise beat me to it — and I think her post is GREAT, so I’m just going to reblog hers.
    I think the section on cellulitis is especially important. I had my first run-in with cellulitis at the end of last may when we were on vacation & I had no out of state coverage. I didn’t know what it was — I thought it was a terrible and painful sunburn (that only appeared on my lymphedema arm (an arm that was fully covered and couldn’t possibly have gotten burned!) Lol!). And it did almost kill me. I had to seek emergency care on vacation — and when we got off the plane at home, I had to go straight to the emergency room at the hospital (where I remained for much of the next few weeks). It took multiple hospitalizations, a ton of antibiotics, and a wonderful infectious disease specialist to get it under control — even still, it was September before it was finally considered “controlled.” I just had it again a few weeks ago (on vacation!), but knew what I was looking at this time, so I immediately started on the emergency antibiotics I brought with me, and I came out of it unscathed this time.
    Special thanks to Denise! You are doing everyone a GREAT service by posting about LE and especially cellulitis here. I hope everyone who has had lymph nodes removed (or who loves someone who has had lymph node surgeries) takes the time to read this!
    ~L

  5. I know I sometimes like to follow ignorance is bliss. I only had 2 lymph nodes removed and I thought my breast surgeon said I didn’t need to worry b/c only 2 were removed. I will have to ask again. I haven’t done anything about educating myself on lymphedema since I didn’t think I was at risk. I love your blog Denise and how much you have helped me. 5 more rounds of Taxol!!

  6. Your writing struck a cord. I know what you mean about how people just sort of stop wanting to hear about it. This year our 15 year old daughter was diagnosed with Primary Lymphedema. In my every day life I find those around me don’t really want to hear about her/our struggles to treat her condition let alone ‘crazy’ ideas about reaching for an illusive cure. Its so hard to imagine a normal child (let alone a varsity runner) not overweight, never sick or injured, no surgeries, just literally one day had her ankle blow up and as you said “presto”! How could her lymphatics work one day and fail the next? What changed? Why? Anyway, no one wants to hear it. Least not those who have listened to me several times before. No one ‘gets’ how hard it is for her, how much work and sadness is involved. Its just such a long process of acceptance for her and for us. Its not an even road but smooth then pot holes….then cliffs. The other day she spent the afternoon in a favorite pair of boots. Ones that made her feel tall and elegant but ones which also were likely to increase swelling. (She of course wore her compression garment underneath as she has every single day since diagnosis). Idiotically we then found ourselves out shopping for a dress and shoes for a formal dance. How can I possibly communicate my heartache watching her struggle to fit her swollen limb into an unforgiving ‘pretty’ shoe? How do I go to work Monday morning and say what a ‘wonderful’ weekend we spent out shopping? It wasn’t. It was heartbreaking but they can’t possibly understand and frankly they are bored with the whole thing….I get the feeling they are saying ‘get over it already’. I think she spent most of her life with a normal leg. I think she may never really get ‘over’ it. I guess only those with lymphedema or perhaps those who really love someone with it can understand. So, anyway I get it and you have my sympathy and as best I can my understanding and appreciation. Thanks for writing!

    • Julie thank you so much for sharing you and your daughter’s story with Primary Lymphedema.
      I AM SO VERY SORRY. I cried with you as you were describing your feelings. I found some
      things about teens and Lymphedema on the internet. Does your daughter like to write?
      Starting a blog for these teens would be so helpful to them! Just a thought! My best, Denise

      • It’s funny that you ask. She actually is a twice nationally awarded author and poet. Her writing is both a great passion and great therapy. She recently applied to a summer writers studio and in her application described the horror of getting lymphedema and her relief that it could never take her writing away. Thank heavens for that.

  7. Thank you so much for this information! I had NO idea that I could be at risk. They took 4 nodes, so I better get busy learning about lymphedema! With your permission, I would like to reblog your post. And, Julie, I am sorry to hear about your daughter. I am certain that her writings will be a blessing to both her and to those who read them. I hope she starts a blog to help other teens. May she find deep peace and overflowing joy.

  8. Reblogged this on My Lymph Node Transplant and commented:
    When ever I see post of people’s experience with Lymphedema I feel it is so important to share by reblogging.. Everyone’s story is personal and different but people need to understand what it is like to live with Lymphedema and the change it makes to people’s lives… Thank you Denise for opening a window to your Life with Lymphedema…. Helen

  9. Like Shaun mentioned, I also had only two lymph nodes removed and didn’t think I had to worry about lymphodema. I have not had any swelling to date, but I do, of course, try to carry all my groceries into the house in one trip. (That must be a universal thing!) I will certainly not do that in the future, and I’ll be bringing this up with my oncologist next week. Thank you for the great post, and for the humor that you infused into it. Keep up the great attitude! Michele

    • Hi Michele, thanks for writing. Yes, so often it is overlooked when there are only a couple of lymph nodes involved. Sometimes those are the women who have taken no precautions because they were never told what to do like wear a compression sleeve when flying! Your Oncologist may try to down play it. But it would definitely be wise to make a visit to a Lymphedema Specialist! Good luck!

  10. This was a good post for me to read. I’m getting fitted for a compression sleeve next week. I had 12 lymph nodes removed from my left arm and the swelling has begun!

  11. I have had NO nodes removed and I got it!!! Even my doctor never heard of such a thing. The chemo was so aggressive it destroyed my lymph nodes, turning them to mush! Since I never had surgery or radiation, we don’t even know how many are dysfunctional. Only that I have mild to moderate LE in my left arm/hand and need 24/7 compression to keep it under control. Your readers should know!

    • I am so very sorry. I have heard of women with no nodes that got Lymphedema,
      but have not heard from any. Plus, the ones I have heard about had Radiation.
      My Lymphedema Specialist said she knows a few that had similar cases to yours.
      I will get the word out. Thanks so much for writing and letting me know!
      My best, Denise

  12. I had 27 lymph nodes removed in my left arm and chest when I had my second mastectomy. My mother, God rest her soul, got lymphedema when she had her mastectomy 47 years ago. Back then, they didn’t even have a name for it, I don’t think. If they did, no one knew about it at our small hospital. They just told me it was part of the cancer. At any rate, I was aware of it, and scared to death of it. When I had my first mastectomy, I worried so much that my surgeon got tired of hearing about it. He told me he would be glad when I had my 3rd cancer-free anniversary because then I would be past the chance of getting lymphedema. Well, unfortunately, I never got to that 3rd anniversary. A year following my first mastectomy, they found kidney cancer, and I had to have the kidney removed. A year after that, they found cancer in the remaining breast, and I had my second mastectomy. Again, I began to worry…And sure enough, 4 months after my surgery, I was slicing cucumbers for our Easter dinner, and cut my finger on the left hand.,My arm tripled in size immediately. I found Lymphedivas on the Net and got several of their stylish sleeves. I wore them for a year and a half, when for no apparent reason, my arm started decreasing in size. To this day, it is still bigger than my right arm, but I am grateful that it looks almost normal again. But, are you telling me now that I should still be wearing the sleeve all the time, or just when there could be strain on the arm?

    I am glad I found you in my mailbox. I look forward to seeing more of you. Thanks for sharing so much with me today.

    • Hi Cherie – thank you so much for sharing your story. I am so sorry you have been through so much. And you are the first person to hear that a cut started the Lymphedema.
      My arm has gone down dramatically from the time I had the major flare up from carrying the grocery bags. But it has taken a lot of time, work and therapy from my Lymphedema Specialist. I am down to wearing the sleeve only in the daytime.
      I am not a Lymphedema Specialist, but have sure learned a lot. In your case and in the case of anyone even at risk, it would be wise to wear your sleeve if you are doing any heavy-duty work (like gardening, trimming trees, moving furniture, lifting, heavy housework, etc) and when flying in an airplane. My Lymphedema Specialist recommended that if I am really doing heavy-duty kind of work to wear my sleeve and wrap on the outside of it to give it double stability.
      I hope this helps. It is good to hear that your arm has become almost normal again. My best, Denise

  13. I developed lymphedema shortly after radiation. Because they started me wearing a compression sleeve so quickly and started physical therapy with a lymphedema therapist immediately, unless you actually measure, you cannot tell now that there is swelling. I have found that if I don’t wear my sleeve though, my upper arm begins to swell and gets this awful burning sensation. It’s my hope that if I keep wearing it, doing the massages and exercises, and being careful not to injure that arm, that I can keep it from getting any worse because I understand that mine is considered a mild case at this point.
    You can have anywhere from 5 to 35 lymph nodes in the axillary pad. Perhaps that is why some people are at risk if they only remove 2 or 3. Maybe they had fewer to begin with. With me, they had already confirmed through biopsy and ultrasound that I had cancer there so they knew ahead of time they would be removing the whole axillary pad. Ironically, I only had 6 nodes in it.

    • Elizabeth – thanks for sharing your Lymphedema story. I am so glad you have it under control and did so by getting help quickly. This certainly is the key!
      In all my reading, research, treatment, and hearing from people all over the world, I did not know about the axillary pad and varying degrees of lymph nodes contained therein!! Thank you so much! This definitely explains a lot and why some people are at greater risk! We all thank you for this info! Denise

  14. 3 years after my diagnosis my LE started, that was back in 2004. I went to therapy for a while, got fitted for a sleeve, but admit I didn’t take it seriously. My compression sleeve never fit well, so I quit wearing it. My swelling wasn’t too bad, so I figured I’d be ok. LE was not a huge problem for me until this past year. I lifted some very heavy grocery bags, moved furniture (spring cleaning time) and I have had cellulitis this year too. Now I have it in my trunk, underarm, arm and hand. I did everything wrong, and did not take LE seriously. I never dreamed this many years out, that LE would get like this. It is a painful debilitating condition.

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