Holding Space

With Shelly Vaughn


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Spring Update

I think this has been the longest I’ve gone without posting an update. Sorry, everyone. That also means there are probably a lot of random things to talk about, but I’ll keep it as brief as possible.

Physically I’m doing really well. At the end of January, my surgeon stopped adding saline to my expanders because my skin won’t stretch anymore. So the size I am now is about the size I’ll be forever- a solid B! I’ll take it!

As planned, I have to stay at this point for 6 months then have one LAST surgery to replace the expanders with implants. So that surgery will be on July 19th. That’s just about 3 months away. I can hardly believe that I’m just 3 months away from the last step of this!

I’m gradually getting used to this body now. My chest and back are uncomfortable all of the time, but usually not painful. The hormone blocker that I have to take for at least 8 more years still causes joint pain, so I feel sore and stiff a lot. I’m trying to stay as active as possible to help with that.

In the last few weeks:

– I had a follow-up ultrasound to monitor the reactive lymph node under my armpit to reassure me (again for the 4th time) that it’s not malignant.

– My radiation oncologist officially discharged me from her care.

– My general surgeon said, “although you’re the highlight of my day, I don’t need to see you anymore”! (Since I have some attachment issues, I asked if I could come back in a year just so I can hear another person tell me I’m healthy.)

– The lymphedema on my right arm/hand is not too bad. The reconstructive surgery broke up some of the scar tissue that was impeding the lymph flow. So now it’s not nearly as swollen. Three of my fingers are large and my arm gets tight and uncomfortable sometimes, but nothing that a night of wearing my compression sleeve/glove can’t help.

Personally, life continues to be a constant mix of laughs, joy, frustration, peace and two pre-teen girls. Rob is busy training for the Akron marathon in September. The girls are busy with school, dance, and friends. We’re getting out to enjoy the nice weather. Work is going well but busier than I’m used to.

I’ve had a couple of sweet days with extended family that I’ll always remember (Toya Groves and Pat Smith- thanks to both of you for two special days.) I’ve also been spending some unexpected time with friends from home- time that is always cherished.

All in all- life is good. Some days the sun is shining and we feel the warmth on our skin. Some days it’s harder to feel it, but we know it’s there because we see the light. One of the greatest blessings we have is the light from the son.

Happy Spring.


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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.