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

Yesterday, I turned 37, and today I received my final radiation marking the end of my active treatment for breast cancer. Compared to chemo and surgery, radiation was a breeze (just time consuming - every weekday for six weeks!) My skin irritation isn't nearly as bad as I anticipated, so I'll keep applying ointment and watching it peel for a few weeks as things continue to heal. ​

I've been declared "no evidence of disease" and my "active treatment" is over, but something I never realized before going through this myself is that my experience with cancer is still not over. I'll go for follow ups every 6 months for the next 2 years with each of my oncologists (medical, surgical, and radiation). I've started seeing a cardiologist because chemo seems to have slowed down my heart rate (nothing that any doctor seems too concerned about, but not normal for me, so something to monitor and hopefully regulate with medication). I may need physical therapy on and off to prevent lymphedema (swelling in my arm) because of the lymph nodes I had removed. In a week, I'll begin taking a hormone therapy pill, which can come with a variety of side effects. The goal is to continue taking it, or another version of hormone therapy, for 5-10 years to lower my risk of recurrence. After months of low exercise, it's going to take some time to get back to my "normal" self, and with the heart rate changes and some lingering shortness of breath, it could be a challenge.

​I'm starting to understand why cancer survivors talk about "the new normal" after treatment. My body has been through a lot, and will continue to adjust and recover. I'm ready for this phase, and whatever challenges it brings, I'm grateful cancer cells aren't a part of it. ​

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!

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.

Yesterday was a pretty good day. I received my 4th out of 8 chemo infusions, and it was the last round of AC before I switch to Taxol, which comes with less nausea related side effects. I also won't have to continue taking steroids on Taxol, which may be causing some digestive side effects as well. The chemo drug Adriamycin is commonly referred to by nurses and chemo patients as "the red devil" because of it's toxicity and severe side effects, so I'm glad to put it behind me. The nurse yesterday also told me a story about a patient from Mexico who, upon hearing we call it "the red devil," was appalled. In Mexico, they refer to Adriamycin as "Jesus' blood" because it's healing you. What a much more positive perspective! And it must be true, because my oncologist believes the treatment is working.

I saw Dr. Mintzer for the first time since beginning chemo (he's been out of town the past few weeks). After catching up on my experience and side effects, he gave an A+ as a chemo patient and encouraged me to continue using over-the-counter meds to anticipate the side effects I've been experiencing the past few rounds. He also did a physical exam and said the mass feels "substantially smaller"!!! Hormone receptor cancer tends not to respond as quickly to chemo compared to more aggressive tumors, so the fact that after 3 infusions he feels a difference is very encouraging. He also was unable to feel the swollen cancerous lymph node under my arm, which was previously easy to find. Obviously, I'm really encouraged by this, and it's just the news I need to keep going for the next 2 months.
​
Positive thoughts and prayers for energy this week would be appreciated. On top of my typical teaching schedule at the university, I am currently serving on a hiring committee and have a number of extra meetings coming up. I'm sure I could have stepped away from this commitment because of my treatment, but to have been invited to serve in this way as a first-year, full-time Lecturer... I was not about to pass up the opportunity. Cancer may be slowing me down some, but I refuse to let it interfere with every positive aspect of my life. So I'm pushing through. Thus far, I have found after receiving chemo on a Friday, I typically hit a low energy point around Wednesday, so I'm hoping I can take some extra naps to get me through the week. And since I'm still avoiding coffee (doesn't sit well in my system with the chemo)--lots of caffeinated tea!

At the end of September 2018, I felt a lump in my left breast and my world was turned upside down. I tried to ignore it for about a week - (1) to see if it would go away on its own, as the internet suggested it might, but (2) because I was uninsured and waiting for my new health coverage to kick in from my new full-time job. Throughout my adult life, I have been without insurance more than with, and this is the first time I was able to get coverage through my own, full-time employment (as opposed to through a spouse's insurance or through the ACA healthcare marketplace).

When the lump still felt like a brussel sprout under my skin in early October, I called my Primary Care Physician, who is also my gynecologist. She referred me for a mammogram but assured me that often in young women, these things are just a cyst, and not to get too concerned about it just yet. I called from my car to schedule the mammogram, and spent the next week trying to convince myself that it was, in fact, just a cyst even though deep in my gut I already knew.

At age 36, I had never had a mammogram before. I changed into the hospital gown and waited with the other women in the small waiting room, pink pens and brochures and other decor scattered throughout the breast center. When it was my turn, a tech brought me into the room and situated my breasts, one at a time, into the machine. She viewed the images on her screen, and readjusted me a few times to try to get clear pictures of the area where my lump was palpable, near my left armpit. She gave no indication of what she was seeing on the screen.

I returned to the waiting room to await the results. While most of the time, mammogram results come days or weeks later, this particular breast center has doctors reviewing the images electronically on the spot. Just a few minutes later, a woman pulled me into a separate waiting room, private, and asked some questions: Had I ever had a mammogram before? Why did I come in for one now? Did I have a family history of breast cancer?

After the fact, I realize that this was the moment I should have known I had cancer. It was clear on my mammogram that something was terribly wrong. But I was still in denial. No. No family history.

She led me to an exam room for an ultrasound. I laid on my side, lump facing up, and a resident globbed on the ultrasound gel and took several images with the ultrasound wand. After a few minutes, a radiologist came in to review the images and to take another look. She was not encouraging.

The radiologist ordered a core biopsy of the lump and a nearby lymph node that appeared abnormal on the ultrasound as well. Without saying "you have cancer" she was telling me "you have cancer." She asked if I had anyone with me. She encouraged me to schedule the biopsy at the front desk before leaving. She handed me a business card for a breast surgeon and said I should make an appointment now, don't wait for the biopsy results, and that whatever this was, I should have it removed.

I cried.