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July 29, 2009 / keeponspinning

OK, let’s talk about lymphedema.

You know, I’ve been through quite a bit this past year.  Too many biopsies, radical surgery, port placement, heavy duty chemo, intense radiation, then more big surgery. 

My cancer was bigger, faster growing and more widespread than most breast cancers found in the US.  The five year mortality rate for cancers just like mine is high.  Since my family needs me around far longer than the numbers predicted, we decided to pursue the most aggressive treatment plan.  Nobody promised anything, but the team of doctors  reviewed the medical literature and we all agreed, and I went through it.  All of it.

Through it all, I’ve had my ups and downs.  I’ve been scared, anxious, had pain management issues, been anxious, battled with weakness and fatigue, and have I told you about being anxious?  But I never really got angry about the whole thing until now.

lymph

Lymphedema is the LAST STRAW.  I really thought I was done with medical stuff for the summer.  I was supposed to have this time to heal and get my strength back.  And speaking of time, I was supposed to have some, rather than spending hours and hours every week (sometimes every day) interacting with the medical world.

If you want to learn more about what lymphedema is all about, you can look it up, but basically it’s high-protein swelling and tissue damage that comes from lymph nodes and vessels being removed in surgery and damaged by radiation.  The treatment is very time intensive. 

lymph2

I thought I was done with all this pain, hassle, incapacitation, and all these interactions with the medical world.  I did EVERYTHING I was supposed to do and now I was supposed to have a little break.  I am truly BURNED OUT on having stuff done to me.  And besides, how in the world can I resume my role in my household with all this #$%^& on my arm???  You know what else?  It’s HOT. 

I thought I’d avoided the anger stage of cancer grief.   Guess not.  Thanks for listening.  I wonder who’s the patron saint of lymphedema???

20 Comments

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  1. Harriett / Jul 29 2009 8:00 pm

    Elizabeth, I think even the anger stage is absolutely necessary in the healing process. You have been through so much, taught US so much…thank you for trusting us enough to “vent”!

    Hope you get relief soon and I’m sure one of your friends will think of that patron saint of lymphdema for you!

    Hugs and prayers!

  2. rowena___. / Jul 29 2009 8:49 pm

    dear elizabeth, i am sorry this part of the struggle has invaded your summer. i wish i had words of wisdom or comfort, but they really elude me, mainly because i want so much to take the pain and anger away from you and i can’t.

    but i can pray, and i do pray, and you are in my heart all day.

  3. A. Watson / Jul 29 2009 11:12 pm

    Kick, cuss, and scream, you have every right to do so. Just keep hangin in there for those great kids of yours!!!!!!!!!! I love your site, don’t know you at all but I sit here and root for you every day.

  4. Esther / Jul 29 2009 11:37 pm

    St. John the Theologian, the Beloved Disciple – protector against diseases of the tongue and heart, protector against drawl and [τραυλότητας?], swelling, insomnia, burns, hail, and protector of the cultivation of roses

    So there you go — swelling and roses in one.

    LOVE YA! ESTHER

  5. Teri / Jul 30 2009 12:40 am

    I agree with every comment before mine.

    You have to deal with the anger stage to be able to move on in your healing process. Being angry is necessary because you have to deal with IT to get better. We are sorry you are not having the summer you had hoped for, wished for, or needed, but you are having a summer, and you do have a trip just for you, to look forward to and give you strength. St. John – swelling and roses – who knew?

    Hugs to you.

  6. Edda / Jul 30 2009 1:53 am

    Dear Elizabeth,

    You are continually in my prayers. I can only imagine how difficult the lymphedema is to deal with, plus all the other stuff. I hope your upcoming trip will be all you need it to be and that it will help take the focus off the medical stuff and provide pure enjoyment. I’m hoping to meet your kids while they’re in Kalamazoo and to see sweet George again. Maybe I’ll even get to meet you….?

  7. Kyle Weatherly / Jul 30 2009 2:41 am

    Hi Elizabeth,

    I came across your blog via google alerts. I work for a compression garment manufacturer. One of our products (Tribute) may help you as you manage your Lymphedema. Assuming your therapist thinks it is wise, I would be willing to offer it to you completely free of change.

    If interested, please contact me at kyle.weatherly@solarismed.com

    Be well,
    Kyle

    • Maura / Dec 26 2010 1:34 pm

      I came across this blog looking for the patron saint of lymphedema. I saw this post about the Tribute, and I have to say, it does work very well. I use it at night (because I have it in my leg) and it really helps the swelling go down more than compression stockings and wrapping during the day. Massage therapy does wonders too- although you’re probably already doing that.
      I’m a 19 yr old college student, and I know lymphedema is hard first hand. I can’t imagine having it in my arm and hand.
      You’ll be in my prayers. Here’s a clip from a healing miracle of Maureen Digan who suffered from lymphedema. St. Faustina is great! And there is a song version of the Chaplet of Divine Mercy that is absolutely beautiful.

      Peace :)
      Maura

      http://thedivinemercy.org/message/stfaustina/graces.php

  8. Nadja / Jul 30 2009 12:00 pm

    Sending prayers and a cyber-hug your way. Surrender is the hardest lesson in the life of every Christian, I think. We have nothing tho offer God that He needs or wants. All that belongs to us that is not from Him is our Will and our sins. He has no desire for the latter, so that leaves us with only our Will, and being our only real possession, we do so cling to it!

    You have had more experience in surrender than many get in a lifetime.

    God bless you and yours abundantly.

  9. Nancy Ray / Jul 30 2009 2:50 pm

    Dear Elizabeth,

    I rarely am at a loss for words, to which hundreds of students would willingly attest. But I’m speechless once again, ao I am going to take advantage of those who have written before me and echo theirs. You are always in my prayers. Love, Nancy

  10. Annie / Jul 30 2009 6:53 pm

    Keeping you in prayer. I wish I could take the swelling, frustration and pain away.

  11. rowena___. / Jul 30 2009 8:51 pm

    kyle, you are now the top of my list for my nightly prayer of thanksgiving!

    esther: drawl? as in southern? maybe i need st. john too. :D drawls and swelling and roses, oh my!

    elizabeth, i stand ready to drop everything and come down there right now, seriously, and take care of your home and your kids. i know that often that is not the most helpful thing, to have someone come charging in and be all up in your space ;) but i’d do it in a heartbeat. it is an open-ended offer, so when you need it, ask for it.

  12. Julie / Jul 31 2009 12:17 am

    Elizabeth
    over the months I’ve read your blog I was in awe of your lack of anger! I was angry for you…for your family! I don’t understand why these things happen to us nor do I understand how you feel, but God does and all I can do is offer up prayers for you and for your beloved children.
    Praying these days of difficulty soon pass…
    -Julie

  13. Jane / Jul 31 2009 2:05 am

    It just so totally sucks.

  14. Michele Q. / Jul 31 2009 11:43 am

    Oh Elizabeth dear I’m so sorry. My heart aches for you dear one –we are praying. It’s so hard to understand the why of all this sometimes but it is OK to be angry, it’s perfectly normal. Of course you already know that but sometimes maybe it helps to have others affirm it. If I can do anything for you (and I really do mean that) please let me know.

  15. kristi / Aug 1 2009 11:44 am

    You are right to be angry– this stinks. I hope it is better soon.

    kristi

  16. Lynette / Aug 4 2009 2:23 am

    Big gentle hugs! You have every right to be angry!

  17. Mary Lou Shookhoff / May 26 2012 7:57 pm

    I am so so sorry that you have to endure so much. You are so young to have gone through so much. I am fortunate that my lymphedema is mild and from having my varicose veins stripped many years ago and then having total knee replacements. I don’t have cancer but have had my health erode over 13 years to the point where I was either in the hospital or having IV antibiotics at home every month. I had to quit a job I loved – I was a nurse who worked with high risk OB patients in a program which had a high rate of success in helping these women achieve a full term pregnancy, sometimes for the first time. I asked the nuns and friars at EWTN to pray for me last January after a botched total knee which became infected with MRSA. I had a 5% chance of keeping my leg and thank God did. 2 weeks after my second surgery, I was rushed to the hospital again with a temp of 104.7 – I had a raging kidney infection and at the same time my PICC line had also become infected. When I got home, I felt as if I had been stuck in Hell all fall and Christmas season. So I asked them (EWTN) to pray for me and they did. They pray for you for 30 days, 24 hours a day , in front of the Blessed Sacrament! And some of them are in Lourdes. And Elizabeth, I haven’t felt this good in 13 years!!!!!!!!!!
    Would you like me to ask them to pray for you, dear? I know that when you feel this overwhelmed that even an email can be too hard. If you feel up to it, let me know and I will ask them for you. And of course I will mention you in the intentions at Mass (just by your first name) and will pray for you myself. God will continue to bless you but some days it’s hard to see it. Find something to offer your suffering up for. When I did that, it helped. Your columns always make my day. God bless.
    Mary Lou

  18. deborah litster / Oct 26 2012 7:02 pm

    iwould really like to interact with someone who realizes that this issue is really put on the back burner I just discovered i have lymphodemo of my left arm after i had cancer in 2005 did the follow up crap went for so many ultra sounds because i was experiencding pain under my arm and told nothing was there nothing mentioned about how the inevitable lymphodema after 6 very good lymph nodes removed by the revered Dr Vidic in Kitchener, Ontario now i have this huge left arm not so bad but it aches and hurts consistantly making it impossible to hold down aan 8 hr job of any physical activity

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