my Breast Cancer blog

2004, age 34 — this is my story

Home » Archive by category "Lymphedema"

LympheDIVAs Compression Sleeve (GIVEAWAY)

I have a compression sleeve. I just don’t wear it much—mostly because I’m not at high risk for developing lymphedema, but also, I think, because the thing is sorta scratchy, and it pretty much blends into the corner of my closet withs its flesh-colored boring-ness, and, so, I usually forget to wear it when I mow the lawn (which, to be honest, is rarely) or when I travel by plane (which I hardly ever do). I’ve got to tell you, though—I’m pretty sure times are gonna change.

I just received a new fancy, schmancy sleeve from LympheDIVAs—a small, family-run company that provides fashionable, medically correct compression garments for upper extremity lymphedema. Lymphedema in breast cancer patients is manifest as swelling that can occur when a sentinel node or a number of lymph nodes are removed or when the nodes receive radiation therapy. Having a sleeve on hand is key—it’s one of the tried and true therapies for lymphedema. Now that I have my newbie, I’m thinking it might become more fashion accessory than cancer-surviving burden.

There’s a great story behind LympheDIVAs: The company was founded in 2006 by three inspirational women, two of whom had lymphedema themselves. One of these women—Rachel Levin Troxell—pushed that hot, thick, itchy, beige compression garment option into the shadows by launching some comfortable, breathable, aloe-vera infused, and fashionable arm candy. Seriously, isn’t my arm beautiful?

Sadly, Rachel passed away in 2008, but her creation lives on, thanks to her dad and brother, who are working to fulfill Rachel’s mission to bring lymphedema awareness to the breast cancer community and beyond. Thanks also to Anna, the designer of all the beauty—the same Anna who is GIVING AWAY one sleeve and one gauntlet to one lucky reader.

Ready, set, enter to win:

  • Browse the LympheDIVAs online shop and pick out your favorite pattern; leave a comment naming your fave.
  • Leave your comment no later than 5:00 p.m. EST on Thursday, July 26, 2012.
  • You may enter only once.
  • Open to legal residents of the 50 United States and the District of Columbia, who are 18 and older.
  • One winner will be selected in a random drawing via random.org.
  • One winner will receive one sleeve and one gauntlet in the pattern of her choice. Gift valued at $153.
  • Winners will be notified by email, so make sure to check next week to find out if you’ve won!

The big deal

Tomorrow is the day I report for a visit with my radiation oncologist, the woman who designed and delivered my radiation therapy, those 30 some daily sessions that blasted the site of my tumor in order to prevent a local recurrence of breast cancer. So far, its doing its job. My cancer has not returned.

I return for radiation follow-ups every six months. I get weighed, my arms get measured to check for swelling caused by lymphedema, my breasts get manipulated by several sets of hands, and I get a chance to report any new symptoms, to ask any pressing questions. I don’t have either at this time.

This appointment is not really a big deal anymore. Except that when I really think about it, it actually is. There’s a lot at stake as I present myself before the medical students, residents, fellows, and doctors who will study me. There’s a chance they may find something suspicious, after all. And if they do, the could-it-be-cancer? wheels will start in motion. The prospect of that stings a bit.

My gut tells me that I am fine, that my cancer is long gone, that I’ll walk away from my appointment as confident and happy as I’ll be when I arrive for it. My gut has served me well throughout my cancer years. If it’s on target as usual, then I will be well. And I won’t have to worry about this high-stakes visit for another six months. Well, not exactly.

I also see my medical oncologist—also known as my chemo doctor—every six months. The same basic scenario occurs—substitute blood work for arm measurements—on a different time schedule and in a different office. Also not a huge deal anymore.

Except that when I really think about it, it is.

The curse of information

Sometimes it’s good to be in the dark — to not know all the facts and to just happily take things as they come. I was somewhat in the dark when I had my lumpectomy. A doctor told me I needed surgery and I had it. I did a bit of research but I mostly placed my trust in the surgeon and didn’t really question the side effects of surgery, the possibility of death that comes with any major operation, the long-term implications like lymphedema. I just had the surgery. But that was seven months ago. Since then, I have been bombarded with options and decisions and I have become a professional information seeker. I want to know the good and the bad, the statistics, and the personal stories of others in similar situations. This helps. But it also scares me.

When my oncologist suggested I consider taking Herceptin as a preventative treatment, he told me there are possible long-term effects on the heart. He said there are not many short-term side effects, other than possible fever and chills at the time of infusion. But like all medications, there are all sorts of possible side effects, many of them rare. My oncologist did not name them all — perhaps they are statistically insignificant. Maybe I should have taken the information he gave me and made my decision — which would be to proceed with a therapy that can give me a 50% better chance of survival. But like I always do, I looked for more information on Herceptin. And I found all the possible side effects.

There are many possible side effects, most of them not likely for me, but what worries me is the fact that 15 women have died from Herceptin. Out of 25,000 women in one study, 62 had an allergic reaction. And 15 of these 62 died. I’m sure just as many people have died from the chemo drugs that have already been pumped into my body. And I’m still alive. People have died while having surgery. I’ve had several surgeries in my life. I survived them all. Women have died in childbirth. I’ve had two big babies and could have had major complications — but I didn’t. I survived and so did my babies. So I know the liklihood of my having serious problems with Herceptin in probably low. But it’s on my mind.

The same oncologist who suggests Herceptin once told me to stop reading. He said that we usually seek information when we are confused or worried. And in these states, we focus on the negative angle of the information. Which is what I do. I bury the fact that thousands of lives will be saved by Herceptin and I obsess about the fact that a few have died from it.

So I am still wondering about this drug. My gut tells me to do it — and I probably will — but first, I must find my way out of this maze of information.

Information is a gift. And it’s a curse too.

Jacki Donaldson

Physical therapy & more

Yesterday I went for a physical therapy consultation. My therapist specializes in lymphedema which is a swelling of the arm that results from the removal of lymph nodes during a lumpectomy. I had four lymph nodes removed so I am risk for this condition. It can be a mild swelling or it can be quite obvious. It is usually permanent so therapists try to address the condition before it happens. There is no real prevention for it but awareness is still important. And radiation therapy can contribute to the swelling because it damages the effectiveness of the lymph nodes — which work to drain fluid from the body. When some are missing and others are damaged, fluid can build up and cause swelling.

I have a low risk of getting lymphedema — four missing lymph nodes is not so bad — but I will still be monitored. So yesterday I had my arm measured. My affected arm (left) was a tiny bit larger than my right arm but this is not significant right now. I was given some exercises to do at home to maintain good range of motion — I feel some tightening in my armpit — and I need to purchase a compression sleeve to wear on my arm if I experience swelling or if I ever fly on a plane. It is not recommended that I lift more than 15 pounds with my left arm (Danny weighs 30+) and I cannot ever have my blood pressure checked on this arm — or have a needle stick or any other procedure that could affect the flow of blood and fluids.

I will go back to physical therapy in two weeks and will be monitored throughout radiation — which is 1/3 of the way done now.

I just completed my 10th radiation session and have 23 to go. It is making me very tired but I have not experienced any skin irritation yet. I am prepared for something to happen in the next week or so. I am applying aloe vera gel and calendula (an ointment made from a flower) to treat my skin. When the burning occurs (which is expected), these will soothe my skin. I was told not to wear a bra throughout the whole radiation phase — or to at least wear something that is not tight or restricting on the skin that is being treated. Today I am wearing a bikini top because I have not found anything else that works. Since I can tie the string that goes around my back, I am able to adjust the tightness and pull it low enough that it doesn’t touch my affected skin. I tried jog bras and tight camisole shirts and wearing nothing at all. I am not comfortable without any support so I hope the bikini works out.

So now I am struggling to find the best bra and the best support — exactly what I was doing up until 1996 when I had a reduction surgery. And I thought then I was forever free of this problem. You never can tell what lies ahead.

Jacki Donaldson