Holding Space

With Shelly Vaughn


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Lymphedema is no fun…

Lymphedema is no fun. I did everything I could to prevent this, but it happened.

You see, during my mastectomy I had 8 axillary lymph nodes removed (the lymph nodes near your armpit). When breast cancer spreads, it goes through the lymph system. So part of the mastectomy procedure was to remove the lymph nodes closest to the breast to make sure all of the cancer was gone.

But lymph nodes help to regulate the fluid in your body. Specifically, the axillary ones drain any fluid that builds up in your arm/hand. With part of this system removed, the risk of this kind of swelling in your arm increases.

To prevent it, I’ve been working with a physical therapist since right after surgery. I’ve followed all the rules- not carrying anything heavy on that arm, not restricting flow on that shoulder with bra straps or purse straps, avoiding hot baths and hot tubs, and making sure to wear my lymphedema sleeve during activities. I’ve also done lymphatic massage which is meant to manually stimulate the lymph system and encourage fluid to move adequately.

And yet… three weeks ago… I woke up with a balloon hand.

My arm has been fine, it’s just my hand that’s swollen. I thought it was a fluke and that it would go away in a few days. I’ve still been going to PT to help, but it’s just not getting much better. My surgeon even ordered an ultrasound last week to rule out a blood clot. Thankfully, it’s not a blood clot. But that means it’s definitely lymphedema.

The bad news is that once you have lymphedema it never “goes away”. So I know I’ll be dealing with this forever. But the good news is that it should lessen with continued therapy, a custom compression glove I will pick up this week, and special wrapping (7 layers of stuff) that I have to do at night time.

While it’s this swollen, I can’t close my hand enough to hold a pencil so it’s hard to write. I also have some trouble opening jars and grasping door handles. And it’s a good thing I have no reason to need to make a fist because that’s definitely not happening with these sausage fingers.

I’m praying that this improves in the near future and that I can stop looking at this as reminder of a damaged body. I want to see it as another opportunity to appreciate our miraculously designed bodies. We really are the products of a masterful artist. With firsthand experience of issues that happen during “breakdowns”, I can appreciate the amazing synchrony when all of our body systems work together the way they were designed to do. It really is amazing. But honestly, sometimes, I just don’t know if I need THIS MANY reminders of it.


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25 down…

25 down. 8 to go. It’s so great to think that the end is coming soon. November 20th should be my last radiation treatment. That’s the week of Thanksgiving, which seems so incredibly appropriate, doesn’t it?!?. Radiation is just as exhausting as they said it would be. It’s amazing how good I feel in the late mornings- once I’m up and moving and at work I feel good. (Probably helps that I listen to some great music on the drive to work every day). But by the afternoon and after my radiation every day the exhaustion hits hard. And some days I try to squeeze in too much and hit a wall when I get home (somehow things like getting gas and stopping at the post office have become “too much”). Today was one of those days. Thankful to have delicious leftovers from friends’ meals that the girls could heat up on their own. Though Liana decided her dinner tonight was bread, tortilla chips and an apple. Sounds perfect, honey… go for it. 

My skin has definitely reacted, but not too severely. I have one large section that looks like it has a pink rash and is pretty itchy. And a patch under my arm that is dark tan colored and sore inside. My doctor keeps tabs on me every week and assured me today that these are still very typical skin changes and she’s confident I’ll get through to the end of this without much more reaction. I’m applying all of the lotion I’m supposed to use and have been adding fresh aloe from a plant I’m borrowing from a friend (thanks Alli Herren).

The last 8 radiation treatments are considered “boost treatments”. They are focused just on the mastectomy scar and are more superficial than what I’ve had so far. They say that when cancer does recur, it usually comes back along the scar line. So they do concentrated radiation in that area at the end of treatment to make sure they hit it hard. If that prevents recurrence, then it sounds good to me.

And as a “meh” moment, I just feel the need to elaborate on the “reactive lymph node” under my arm that I’ve mentioned before. Lymph nodes often swell in response to different body illness or trauma. That’s why you get “swollen glands” when you’re sick sometimes. They swell up temporarily then go down to regular size on their own. During my mastectomy surgery, I had 8 lymph nodes removed. But there are still a lot of them left in me (everyone has a different amount). One of them that remains in my armpit area swelled up and was very noticeable about 2 weeks after surgery… in August. This is very common for lymph nodes in that area since there was so much trauma to it during surgery. It’s just that it hasn’t gone down on its own. My amazing surgeon has been keeping an eye on it. After a 6-week check-up he ordered an ultrasound to make sure it was ok. The ultrasound confirmed that it’s swollen because it’s “reactive” and benign (hear that as “it’s not cancer”). At my last check-up, he measured it and assured me that it’s getting smaller even though I can’t tell yet. I just wish… like really, really, really wish it wasn’t enlarged at all. If it wasn’t, I think I could be totally excited about the end of treatment. As it stands, and not to be a downer, I feel like I”m 99% excited and 1% scared that there is still something in there. I’ll have another ultrasound on it in December to make sure it’s still showing as benign and shrinking. (If you’re wondering, they can’t do a biopsy on it right now because I wouldn’t heal and would be at high risk for infection if they try a biopsy in the middle of radiation.)

Let me say this- every day I talk myself into the positive. I have a few mantras that I say in the mirror. I remind myself I’m cancer free; that this is just a benign lymph node; that cancer is gone and never coming back. But if there are days or moments that I seem a little unsure, you’ll know why. And if you’re looking for details to pray about, that lymph node would be a good one right now- that it’s 100% definitely benign and that it goes down on it’s own very soon. I’m so tired of worrying about it. Thanks in advance. And thanks again for the local friends providing meals to help us through to the finish line! Almost there!!!!