Newbie in Tennessee

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Newbie in Tennessee

Postby BBarb » Thu Mar 03, 2011 3:48 pm

Hello, My name is Barbara. I was diagnosed with invasive ductal carcinoma of the left breast in 2003, at age 33. I had a lumpectomy and sentinel lymph node dissection-17 lymph nodes removed total.

I am now 41 and have just developed lymphedema in my left hand/arm. My hand is much more swollen than my arm. I had a baby girl June 2010. She was a bigger baby-almost 9 pounds. I am pretty certain all the heavy lifting and activity associated with caring for her is what brought on the lymphedema eight years after my surgery. Quite frankly, it is making me depressed. I didn't think I could ever have a baby, now that I have my daughter, this happens. It is difficult to lift her just to change her diaper or put her in her crib. Don't even ask me what it's like to lift her when she's in her infant carrier! When she is old enough to go to the park, I won't be able to push her on the swing set or climb the monkey bars. I feel like I'm just the middle-aged mommy with a freaky bandaged arm/hand who can't do anything except sit there.

On top of that, people are starting to stare at my arm because it's bandaged/sleeved. It reminds me of my bald head from chemotherapy. Then I have to REHASH my freaking cancer experience when people ask "what's wrong with your arm??" Then the most annoying thing, also reminding me of my cancer experience, is the stupid advice I get from insensitive people. "The swelling will go down if you take some water pills," or "If your arm hurts, I 'd take Advil. I'd do whatever I could!" One woman tried to compare her convalescence after childbirtth due to an anal fissure THAT WENT AWAY after a period of time to my lymphedema, which is incurable and I'm stuck with it for life!!!! :evil: (She was trying to say she had health challenges that affected her ability to care for her son when he was born.) What's more insulting is the morons offering up their medical advice don't have a clue what lymphedema is or where there lymph nodes even are!! :evil:

I'm so depressed and angry over this. I know there are others who are much worse off than I am, but it doesn't make me feel better. I still feel like less of a person, less of a mother.
BBarb
 
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Re: Newbie in Tennessee

Postby runnermom » Thu Mar 03, 2011 4:16 pm

Hi BBarb,

I HEAR YOU!!! I know about going through thinking that you're the luckiest person in the world to be able to have a baby (I was left with only one of my ovaries after having tumors removed and complete cancer staging), then sinking into a total pit soon after because you get slammed with lymphedema.

My lymphedema came on during my pregnancy, but my obstetrician convinced me it was just pregnancy related swelling and that it would go away. I had my baby this past June, and swelling went down almost everywhere except my right leg and labia. I've been hospitalized with cellulitis and had to have my baby there with me on the hospital bed (because I was breastfeeding and had no family or friends to help me out with the baby), and I worried the whole week I'd strangle my baby with my IV line! Now my lymphedema seems to be spreading up to my abdomen and into my other leg.

I absolutely feel your pain about going to the park with your kid. I have also just been thinking about how swollen and miserable my body will be come summer . . . it's just not FAIR! I have always loved being outside, running, hiking, backpacking, camping, and I wanted to share ALL OF THAT with my daughter. I try to convince myself that I have to be happy for my precious baby. I need to do what I can to give her a happy childhood. But it continues to be such an incredible battle.

I'm proud of you for wearing your compression sleeve. I've struggled with compression garments and bandaging . . . by the time I put diapers and clothes and bibs on my baby, I just can't bear the thought of wrestling into all my layers.

I know I probably haven't helped you. But I know some of what you're going through. And you helped me so much with your post . . . I don't feel quite as alone. (Until now, I just thought that no one with lymphedema knew what it was like to take care of themselves AND a new baby.)

Please stay active in the forums, maybe we'll be of some support to one another!

Much love,

runner mom
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Re: Newbie in Tennessee

Postby patoco » Thu Mar 03, 2011 10:05 pm

Hey BBarb!

Super welcome to our family here!!!!! :)

Both you and Runner Mom really touched my heart deeply with what you both shared. If I could just say anything it would be to never never let this lymphedema make you feel like less of a person. With what you have both been through, I can only imagine what type of a person you both are inside - in your hearts and your spirits.

While I can never know what it is like to have a baby, I can tell you that some of the rest does quiet down after a bit and people's looks and stares eventually won't even phase you. The most looks I seem to get now is because of my breathing tube and tank and that's mostly from the little kids.

Gawd, I do understand about having people tell you "all you need to do is this." Geeezzzzz....I get that both in terms of lymphedema and in terms of cancer. I can not even begin to say how many wierd, freaky things people tell me to do to "cure" the lymphoma. Then if you don't get excited and respond like you're going to rush out and do this, then they get insulted.
LOL.....wouldn't it be wonderful if getting rid of either one was as simpe as these people say it is.......

I so appreciate you sharing and Runner mom's response.

Big welcome to you and a big hug to both of you!

Pat
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Re: Newbie in Tennessee

Postby BBarb » Fri Mar 04, 2011 1:11 pm

It is so refreshing to know there is another new mom who gets what I'm going through. Runnermom, I am so sorry you are dealing with this lymphedema crap too. It makes me feel bad to even be complaining about my arm/hand. You are so amazing to me to have survived and going on to have a baby and breastfeed. I tried the breastfeeding, but after two months of pumping forever and only getting a few drops of milk from my one working breast, I had to give up. Pregnancy really takes a toll on our bodies, and something like lymphedema just adds to it. Taking care of a baby (especially when they're not walking yet) is stressful enough. It is frustrating and isolating for me when I go to the oncologist's office and the waiting room is full of senior citizens giving me dirty looks because I'm struggling just to get the stroller through the door and trying to keep my daughter from getting too fussy. I also do not have any family(both mother and mother in law or deceased) or close friends to help watch my daughter (my husband travels a lot for work), so it makes me more resentful.

Pat-Thanks for your response as well. It is very hard not to feel like a lesser person, especially when I look at my child and then see other normal, healthy moms (the extent of their health problems usually involve a headache or a few sniffles it seems) and how they can really play hard with their kids. I'm a stay at home mom, but I don't even know what I could do for a living that wouldn't involve repetitive use of my arm/hand. I can't even be a cashier! I just remember all the things I could do before I had cancer, before I got married. I worked 50+ hours a week, six days a week, owned my own home and mowed the lawn-with a push mower no less, lift heavy boxes in and out of the shed, etc. Now I don't dare get a freaking insect bite or paper cut or it will be the death of me!!! :evil:

I am really tempted to get a sticker or something, put it on my arm or hand, that reads "I have lymphedema. It sucks. Google it." Maybe that would take care of the staring and stupid comments? Probably not. :roll:
BBarb
 
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Re: Newbie in Tennessee

Postby runnermom » Fri Mar 04, 2011 3:07 pm

Barbara,

"I have lymphedema. It sucks. Google it."

LOL! I think I really might have that sticker made! I mean, I'm normally such a private person (hardly any of my friends know I even had cancer surgery), but it's kinda hard to hide my massive swollen-ness. I might as well wear the explanation for it. And spread awareness!

My only other hope is that I can pressure enough of my med student/doctor friends to pressure enough of their friends to take an interest in figuring out a real solution to this sooner than later. For me, the compression and MLD hasn't seemed at all beneficial (in fact, my swelling seemed worse when I started bandaging), and it's such a burden!

Hey, maybe when our girls are older, we can set them up as pen-pals :).

'Til we need to vent again, I suppose . . .

-runnermom
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Re: Newbie in Tennessee

Postby BBarb » Sat Mar 05, 2011 9:15 pm

I'd love for our daughters to be pen pals one day. I certainly hope neither one of our girls ever has to deal with cancer or lymphedema. :)

I'm sure I'll be lurking/posting about these boards, so I'll probably be venting again.

-Barbara
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