In spite of my best efforts to prevent Lymphedema, about 5 months after finishing radiation, my arm visibly swelled during a dance performance. I had already been seeing a physical therapist preventatively, but increased my visits and spent two weeks doing compression wrapping to attempt to reduce the swelling (which did help some, but isn't a cure). I now wear a compression sleeve all day, every day, and one at night as well.

Living Beyond Breast Cancer interviewed me about living with Lymphedema. As I'm still trying to emotionally come to grips with what this means for me, I'm grateful for the opportunity to share my story. Read more about my experience on their blog:

https://www.lbbc.org/blog/living-lymphedema-katie-budris

Lots to update, but the most important thing is that since my surgery last month, my status is now N.E.D. - no evidence of disease! This means that the surgeon removed all the cancerous cells that could be seen on imaging (the primary tumor, a tiny satellite tumor, and 2 cancerous lymph nodes). The term essentially means the same thing as complete remission or complete response. Doctors generally hesitate to use the word "cured" because they never know if microscopic cells are still present and the cancer may return, but to the best of their knowledge, I am currently cancer-free. 

And yet, my treatment is not over. As I said in my last post, the surgeon removed a few lymph nodes during surgery, and then a few more. With two positive nodes, she wanted to ensure it would be all out and no lingering cancer cells would continue traveling through my lymph system to other areas of my body. She took out a total of 17 lymph nodes, which means I am at life-long risk of lymphedema (swelling in my left arm/side/breast) and need some physical therapy to loosen up the tightness in my arm and armpit (called cording or axillary web syndrome). Lymphedema isn't entirely preventable, but there are things I can do to keep the risk low, and if I do develop it, physical therapy can help lessen any swelling. For now, I'll visit physical therapy weekly until treatment is over and I have gained full mobility again.

I also went for my radiation planning session today, during which I had CT scans done, received 5 small tattoos to mark the radiation area, and learned breath hold techniques to protect my heart during radiation. The radiation oncologist will now map out my treatment and I'll go back on the 24th for a test run. Actual radiation will begin on the 25th for 30 sessions (every weekday for 6 weeks). Because I had a lumpectomy rather than mastectomy, radiation will zap any microscopic cancer or pre-cancer cells that might be lingering in the area unseen. The radiation will also cover the remaining lymph nodes in my armpit, near my collarbone, and in the center of the chest to again ensure there's nothing microscopic left.

​By early August, my active treatment will be over. I'll begin taking hormone therapy pills to reduce the risk of recurrence and will visit my oncologist every 6 months for monitoring. There is a light at the end of the tunnel!

I'm at home resting, recovering, (and grading) after my lumpectomy surgery last Friday. The surgeon says everything went well, though in addition to the tumor she had to remove the majority of the axillary lymph nodes in my left armpit because there were cancer cells present in the first few nodes. I was truly hoping this wouldn't be the case. When I woke up in the recovery room, the first thing I did was check for a surgical drain and found a tube sticking out from under my arm. The hope was that chemo would kill off any cancer cells in my lymph nodes and that they would remove three nodes to find only one had cancer and wouldn't need to take more. We knew at least one was cancerous from the very first ultrasound and biopsies back in October. Unfortunately, they removed three nodes and found no cancer cells, which meant the cancerous one was still in there and the cancer had traveled a bit farther. My surgeon removed 17 lymph nodes (the axilla contains approximately 24) and 2 were positive. There is no reason to believe the cancer traveled beyond this area, and taking out so many nodes will hopefully prevent anything microscopic from spreading. Because the surgery was more extensive, I stayed overnight in the hospital and came home with a surgical drain under my arm.

I'm doing well overall - not in pain, just sort of awkward and uncomfortable because of the drain tube and tightness in my shoulder and armpit (nerves are usually damaged in axillary lymph node dissection and can take a long time to heal). My follow up with the surgeon is on Wednesday the 22nd, and she'll be able to go over the details with me in terms of how many lymph nodes were removed, how many were cancerous, and whether we got clean margins with the tumor. Hopefully she'll remove the drain at the same time.

​Meanwhile, my sister is here taking care of me (and the dog!) and keeping me company while I heal. A rare bright spot in an otherwise difficult situation.

This part of my story is a big one, friends! On April 5, 2019 I received my LAST round of chemo and got to ring the bell in the cancer center. I thought ringing the bell was kind of cheesy and silly... until I did it. And all the nurses cheered. And I got a little choked up and teary eyed. This didn't mark the end of my treatment, but any means. Surgery and radiation would continue into July and hormone therapy for the next 5+ years. But finishing this big, scary milestone of treatment which had affected by entire body systematically feels pretty. darn. awesome.

Chris was able to take the day off and come with me, which I was VERY grateful for as it was the longest day of treatment thus far. It was the first time I had a big gap between seeing the oncologist and starting chemo, so we celebrated the milestone by walking to a local bagel shop for lunch. Thankfully, my veins were cooperative for the IV (8 rounds of chemo with no port!! A big deal!) However, I had a reaction to the Taxol chemo which slowed things down. Many people have allergic reactions to Taxol, and I had a minor one with the 2nd round exhibiting as back pain. Since then, each time they taper my dosage, starting very low and increasing the dosage after 5 minutes, then again, then again. Yesterday, the nurse misread my chart and gave me the full dose right off the back. After just a couple minutes, I had sudden chest tightness, shortness of breath, and overheating with flushing. It was terrifying! I thought I might be having a heart attack or something crazy.