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Posts Tagged ‘lymphedema’

I can’t believe I only have two more days of radiation left. I go in Monday and Tuesday mornings and that is the last of my daily visits to Dana-Farber! It’s become such a way of life, it will be strange not to be there every day. Of course I won’t be able to miss it really, as I will be there for physical therapy in a couple of weeks, and then for the re-expanding soon after that. And then it will really be the lymphedema that dictates how much I am there until the implant surgery this summer.

On the lymphedema front, so far, so good. The overall volume in my arm hasn’t changed, it’s just that it is pooling around my wrist, so I need to give that area a bit more attention when doing the daily lymphatic massage. But overall it’s not getting worse, and I am allowed to stop wearing it (except for when running  and doing other exercise, including major housework – ha!)  beginning next week. I just need to keep track of how it is feeling and looking so we can see if there’s a pattern to any changes. And, of course, go back for the check-up in a couple of weeks and if it gets worse. A good friend of mine who has been cancer-free for five years is now experiencing much worse lymphedema, and that does worry me, but all I can do is take it one day at a time and try to manage it the best I can.

For now, I think I’m doing pretty darn well. The radiation has gone as well as can be expected. When Dr. W looked at my breast the other day (she checks it once a week), and saw how red, raw and peeling it was, she said that it is normal to even a bit better than normal for this point in the treatment. And I thank God every day (multiple times a day) when I put ointment on it and under my arm and my chest (the radiation is done in a pretty big square, just with more concentration on my breast and lymph nodes area) that I can’t feel anything in that area. It’s one highlight of no longer having any sensation in my chest. It looks really, really painful, though – like your worst raw, peeling sunburn. I do have some discomfort, a bit under my arm and chest, but nothing like it would be if I had all the feeling, thank goodness. Interestingly, it’s as if the scar has kind of peeled away with it, too. Not that it matters, though, since I’ll be sliced open in the same places for the implant surgery. Oh well.

And yes, I am feeling the other major side effect, which is extreme exhaustion. Here it is noon on Saturday and where am I? Still in bed, with my lap top, writing this. I am going to drag myself up and out for a run (how can I pass up running outside in this relative warmth???), but am not pushing myself this weekend. Almost every night after work I’ve wanted to simply go home and crawl into bed, and that is just not me. But it should get better after next week. After all, I can do anything just two more times, right?

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When I told Tina that I was having my port removed, she said, “Oh, you’re being deported?” and we both burst into hysterical laughter. I thank God every day for my close friends and family who have kept me smiling and laughing through this miserable journey. I’m choosing to see the removal of the port today as nearing the end, at least the end of the daily part of the treatment. After January 15, other than taking tamoxifen and my PT exercises, there won’t be anything I have to do on a regular basis (unless the damned Lymphedema gets out of control, which I’m not going to let happen, or if the cancer comes back and I’m not even entertaining that thought right now). Then just a few surgeries and a few years of pills – which is nothing in comparison!

Today went well. Mom stayed over so her and Nick got up with me at the crack of dawn (actually, it may have been pre-dawn…) to take me to Dana-Farber so I could be the first person on the radiation table before moving to the OR for the port removal. Both were quick and as easy as could be. We came home and napped, and then I assured mom I was fine and she headed home. After all, I was just hanging on the couch, and am perfectly able to get up and get anything I need – I’m just not supposed to drive or do any heavy lifting.

Of course, after mom left and Nick went to work, I had a few Diet Cokes… and I realized that mom wasn’t just here to help me do things, but to prevent me from doing things! The soda made me jittery and full of energy, so up I hopped, running around the apartment cleaning this, putting that away, sorting these… and then my arm (specifically the wound where the port was taken out) started to ache. Uh oh. Now I’m remembering how they warned me not to do things so I don’t pull the stitches. Ugh. Sorry…

So to get a little more of the energy out without hurting myself more, I sat down to write this. Luckily, Tara is on her way here and we’re going to see a movie. I don’t think I can do much damage there…

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The big L – that could be so many things, I’m not even going to venture a guess as to what you’re thinking! In my world right now it stands for lymphedema. Did you guess it? It’s not exactly a roll-off-your-tongue every day word, and I personally wish I didn’t know what it meant. But when I realized last night that the phlebitis had traveled into my hand and I held my two arms together, I had the feeling this might be happening. Then at work today my right arm was considerably more swollen than my left, and was confirmed by several of my colleagues. Off to Dana-Farber I went (hey, I had to be there for radiation anyway, so why not?) and it was confirmed: yup, lucky me, I can add lymphedema to the list!

It is early, so hopefully it will be contained. Without going into a ton of detail, I need to:

  • Wear my compression sleeve and glove during waking hours. Good thing I got it for the plane! Guess it’s not just for travel any more…
  • Keep doing the lymphatic massage that I learned last week at PT, as well as the exercises. Of course, this would be easier with a partner, but since I’m not with someone right now, it’s all me!
  • Ibuprofen – thank goodness I’m done with chemo and can have it again!
  • Warm compress

None of this is convenient or fun – especially this time of year when things are crazy enough. But it is what it is and I will deal with it and hopefully prevent it from getting worse. That’s kind of the name of the game right now – just deal with it. The daily trips to Dana-Farber for radiation – just deal with it. Taking the Tamoxifen (which I started Saturday) – just deal with it. The hot flashes – just deal with it. At least my hair is starting to grow back…

Oh! Speaking of hair, I got the sweetest compliment at work the other day: this older gentleman, who I have seen around but don’t really know, came up to me in the cafeteria and said, “I hope you don’t mind my saying this, but I have to tell you. I’ve always thought you were an attractive woman, but now that you’re bald, it’s obvious that it’s not hair that makes you attractive.” It was so nice of him, I really appreciated hearing that, especially so randomly.

Now speaking of random (or not so random) acts of kindness: I know I said I was done soliciting donations for Dana-Farber, but this is too good not to share. If you haven’t finished your shopping, consider giving the gift of a donation in someone’s honor. Now until December 31 you can use this special link www.dana-farber.org/yearend and your gift will be doubled! It only works through this link, and only until the end of the year, so don’t wait! And I guarantee anyone you give this gift to will truly appreciate it… I know all of us who frequent Dana-Farber thank you!!!

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