Tuesday, July 21, 2009

Darn It

For almost 9 years I was able to avoid lymphedema but not anymore. Yesterday I showed my oncologist my swollen mastectomy arm/hand and she confirmed it. The swelling started a few months ago but it really gained speed this past cycle. The oncologist said it was caused by the chemo.

The research nurse is arranging for an appointment with physiotherapy to have a sleeve and glove fitted for my arm/hand. What I dislike ... O.K. hate the most, about the thought of wearing a sleeve is that I will no longer be able to hide the fact that I have breast cancer.

Double darn it!

19 comments:

TNBCAmazon said...

Dear Daria,
I am so sorry to hear that the lymphedema developed. What a drag... You've had so many challenges thrown your way already, and now here's another one.
I so hear what you're saying about the sleeve making it impossible to hide you have cancer. I think most of us have that need to hide our disease. But you know what, at the end of the day it's just a compression sleeve. Who in the non-cancer world knows about lymphedema anyway??? Just make up some nice story close enough to the truth about "arm problems" or some such thing. Cancer patients have to fake so much stuff just to make it through another day, so why not this?
I'm sending lots of love and supportive thoughts your way. Hope the decadron won't be too rough on you...

theBluesman said...

it's one thing after another ya, just can't help feeling the frustration too Daria. Anyway cheer up.

Holly said...

oh Daria - i am so sorry about the lymphedema...as to not being able to hide that you've had breast cancer...i am interested in hearing more about why it is important for you to hide??? can you share your thoughts with me...sending love, Holly

Arlene said...

Sorry to hear about the swelling, Daria. But getting after it early is good. And maybe the sleeve will be a temporary or occasional thing and that you will have spells where you don't have to use it.

Sara Williams said...

So sorry to hear this news Daria. I understand how you feel, its like when you lose your hair, you cant hide the fact that you have cancer or are fighting it.

Good luck with the sleeve and do they have any masseurs who could help?

BLOGitse said...

oh no, I'm so sorry!
9 yrs and now this...

You remember I asked about the cording? (I didn't know the word then)
Now I know and I got rid off my first one without pain - with ice!

Thanks for your support and blogger friends!

I wish you...strenght! :)

Best regards from Cairo!

robs said...

Daria,
I'm not sure if it would help or not with the lymphedema, but when I had my neck dissection my doctor recommended getting manual lymph drainage. Its basically a type of massage that "aids in the flow of lymph."

Peggy said...

Daria;

I am so sorry, I know everything that happens makes the journey more challenging to say the least.
You inspire me and you make a difference ...I know you do to me!

sherry lee said...

9 years is a long time to avoid lymphedema Daria so I understand your disappointment that it has now made an appearance. I have seen women develop it early in the treatment process and I understand how painful it is. Wishing you blessings that the sleeve and the physio help with the swelling and discomfort.

Daria said...

Holly,

The reason I like to keep the breast cancer out of the public eye is because I don't like the attention it can bring.

It just doesn't make good small talk at the grocery store.

I can blog about it but I don't wish to talk about.

Daria

Daria said...

Sara,

Yes I will be looking into some therapy for it once I find out more details from the physiotherapist.

Daria

Audrey said...

Oh man! I can't believe it! That totally sucks. I understand that it is from the chemo, but did they say WHY it started now? Is it because of the number of chemos, or was it kind of inevitable? Rats! Well, hopefully the sleeve will take the swelling down quickly, and you won't have to worry too much about it.

Daria said...

Audrey,

Taxotere causes water retention/swelling throughout the body.

I think my arm has been swelling ever so little for a while now. In fact, a couple of cycles ago I showed my arm to the oncologist and she said we wouldn't do anything until the swelling appeared in my hand. Well now my hand is swollen.

I don't have an answer for why now.

Daria

Alli said...

Daria having Lymphadema i know the frustration... I started physio along with ordering a compression sleeve.... I had one session so far am going back tomorrow....

Take care and try not to use your arm very much if you don't have to..
In the evenings I will sometimes put mine in a light sling just to give it some rest...

Alli xxx

Lesa said...

Double darn to infinity. That really stinks. I hope you can find some relief. As someone else said....Only people with BC really know what a sleeve is for. If you don't want to say you have BC you could say bad circulation, arthritis, played too much softball, lol, or joke like "oh this? I am trying to start a new fad! Shine on Daria.

Carol Urban said...

You said: "I can blog about it but I don't wish to talk about."

I can so relate to this comment. I've been seeing a chiropractor the last two weeks. Pulled my lower back. Ugg. This is someone who my husband has gone to for years, so they discussed my cancer and treatment for the past two years.

The doctor asked me point blank the other day, "What was it like knowing you were going to die?" I mean, WTH? That is so personal. I felt it was such an invasion of my privacy and something I do not want to talk about with strangers unless I bring it up.

After laying there and crying for a minute or two, I answered that I had to pray and ask God for peace to accept dying. That doesn't mean I don't freak out from time to time about things but I'm okay.

I would like for once to have the guts to tell someone that certain things are too personal for me to answer because how can that person understand what it is I'm telling them unless they themselves have gone through it?

Any chance you can just tell nosy people the sleeve is because of severe carpal tunnel syndrome? OR be gutsy and say it's none of your business. giggle

Denise said...

Oh dear, I am so sorry....... I know nothing about this but I have heard others talk about it........ And I would not know what it was for or that it was related to BC...... so take heart sweetie........ AND it just does not matter what others think or see!

you are loved !

S. F. Heron said...

D, the same thing happened to me. I HATE the sleeve and refused to wear it. I have it if I need it.

I do know there are extremely specialized therapists who can do massage to help the swelling.

Also, and don't poo poo this one, try using a mini rebounder trampoline. For some reason, exercising on a trampoline encourages the lymph fluids to do their thing.

Regards,
Sharon

Beth said...

Hi Daria - I was curious too about you not wanting to talk about it so I checked back to see further comments. You do such a great job with your blog, but it's true, that's a different form of communication. I am so happy I found blogging for so many reasons. When I run into a friend who doesn't know what I am going through, if I choose to tell them then I usually give them the link to the blog to let them get the info that way since I too don't really like to talk about it. As to the lymphedema sleeve, I will need one when I go back to work since I do a lot of flying. I don't think people will really know what it is, just a new (weird) fashion thing. Let me/us know if you find any cool sleeves out there! Take care...