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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Within Normal limits

I never know these days what might trigger some random memories or negative feelings for me. On Tuesday, it was during a training at work where we had to review protocol including how to put on sterile gloves. And it immediately took me back to my chemo treatments when I would stare at the nurses while they put on their gloves (secretly making sure they stayed sterile and didn’t accidentally touch something they shouldn’t). I wanted to leave the room because it suddenly felt suffocating and uncomfortable. But I quickly reminded myself that I just needed to get through it and get out of there to get it done. Today, it was during a follow-up visit (which is at least a little more predictable). When I first got there, I had to fill out the SAME paper I fill out every time. It’s the paper that every woman getting a mammogram or ultrasound fills out. The problem is- it has a ton of questions about breasts! And I don’t like having to answer those after my mastectomy. I know, I’m probably just being overly sensitive. But I did put an asterisk by the upsetting questions with a paragraph explaining suggestions for how they could make the form more sensitive to women after mastectomies. I know… chill out, right? But the stress level is always a little elevated there and I guess today I was in the mood to share my sensitivities. The poor tech who took me back to prepare- she got an earful of my suggestions. Then we went into that same room with awful mustard-colored walls where I had my first ultrasound. (Sidenote: I wonder if it would be ok to contact a manager and suggest they change the paint color? I’m not kidding. That’s how much it bothers me.) Although this time, i immediately got a report back with great news and that’s when my feelings did a 180. My paper from the dr said “right axillary lymph node within normal limits”. There it is folks- “within normal limits”!! I didn’t know how much I loved those words until I heard them about my lymph node today. This was the reactive lymph node that they’ve monitored since surgery. And after today’s report, I don’t have to have any more follow-ups for it!

And then… (it gets better)…. I left to get a haircut!!!! Can you believe it?! My hair was long enough to need an actual cut! I guess technically it was a “trim” but at least now it has a shape. The girl who did it specializes in cutting curls- and shared a wealth of information about how to take care of this new head of hair. Who knew there was an entirely different world out there for maintenance of curly hair?!? So, turned out to be a good day. 🙂 I am having some pain in my right arm where scar banding has formed. It runs up under my armpit down to the inside of my elbow and makes it pretty sore. So I’m heading back to PT tomorrow to try to loosen it up and see what stretches I need to be doing again. Other than that, I can’t complain. Moving right along…

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Recovery

Yesterday was August 1st… mark that in your calendars as one of the best appointments so far!!! My prayers for healing have been heard and answered. First of all, I got my drains out which was a huge relief. And the surgeon said that’s the fastest he has ever taken them out of someone (just 6 days).

We knew during surgery that there were cancer cells found in one of the sentinel lymph nodes (which is why they removed a whole cluster of them after that). I still don’t know how many more were removed, but he said there were only “isolated tumor cells” in one of them, which is technically still considered negative. No other lymph nodes had any sign of cancer. He said it was because the chemo was so effective in killing the cancer in the lymph nodes. And the original tumor had shrunk to 1.2 cm. All margins are clear, which means there were no cancer cells near any of the edges of what was removed.

With the mastectomy and lymph node removal, they basically got all the cancer OUT of me!!!! It feels so good to know it’s gone!! I’m healing well, the incisions look good, and I have another follow up next week. I’m in a lot of pain today from where the drains came out… my tissue had already started adhering to the drains, so it ripped a little when he removed the drains. I’m taking pain meds to manage that pain for now and hopefully it will be better in a few days.

I will still do radiation as is protocol for treatment. That will happen in about 5 weeks when I’m healed from this. It’s the last big step for this time period (as reconstruction will happen next year).

My mom was here to help a ton last week. And we’ve had a lot of help with the girls and visitors to the hospital (thanks, Lisa GonidakisCindy Hastings WinterBrittany ArmstrongAmber Pierce NormanHannah SpringerKeely A Smith-JividenCinnamon Leonard, Becky Kearns, and Doug Gates.) I also had my own personal nurse today to help with changing my wound dressings (Kelly Dawn Hobbs) . It’s times like these I realize how wonderfully God has paved the way ahead of me… all the people He has placed in my life and ready to help when I need it. Thanks for all the prayers… please keep them coming for comfort as I continue to heal and pray that the pain subsides. Thanks everyone!


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Because He Lives…

Tomorrow is surgery day. We go in early and surgery is scheduled for 10:30. Should take about 4 hours. Please pray for this to go well and for my healing afterwards. I’ll be having a bilateral mastectomy (without reconstruction at this time- that will happen next year after I’m healed from radiation.) Also, pray for Rob as he takes care of me over these next few weeks. And, of course, for Olivia and Liana as they have to make another adjustment in their lives because of my health. They are with friends tonight (thanks, Amber Pierce Norman) and will go to a birthday party tomorrow afternoon, so they should be well preoccupied. Thanks to everyone who called or texted today as well. I’ve been very nervous.

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