Grateful to Rowan University for taking the time to talk with me about my story, how I've used writing to process all the ways cancer has impacted my life, and what young women (and men, for that matter!) should really be aware of beyond the ocean of pink ribbons during Breast Cancer Awareness Month.
Read the feature in Rowan Today:
"A survivor’s story for Breast Cancer Awareness Month: be vigilant"
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:
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!
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.
Last week I had an MRI to assess the tumor and lymph nodes post-chemo/pre-surgery. I spoke with my surgeon this morning, and the results are GOOD!
She said comparing my initial MRI with this one is "actually quite shocking" and that "the tumor shrunk up beautifully." On the initial MRI, the mass measured 3.2 x 2.6 x 2.6cm and now it is described as a "non mass enhancement" that measures 1.9 x 0.9 x 2.0cm. I like those numbers!
The best part is that the initial MRI also showed a swollen lymph node 2.7 x 2.0 x 1.7cm which was biopsied and found cancerous, plus two other small lymph nodes that appeared abnormal. These lymph nodes are no longer visible on the MRI, which means the chemo did exactly what we hoped it would!
We'll move ahead with a lumpectomy and sentinel node dissection on May 10th, and the hope based on this MRI is that the lymph nodes they remove will not have any microscopic cancer cells left. If they do, more lymph nodes will be removed, but the MRI gives me hope that I won't need any further surgery. Celebrating small victories!
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.
They immediately stopped the infusion and rushed to check all my vitals. So many nurses all of a sudden! To be safe, they gave me a half hour to calm down, and then started the infusion again, tapering it slowly like they should have initially. Thankfully, the rest of the treatment was uneventful. But it extended my 3 hour infusion to 4 (after the 3 hours of waiting between my oncology appointment and the infusion.) Long. day. With a broken TV in my infusion room. So glad to be done with all that.
So what's next?
Over the next few weeks I would have another breast MRI to reassess the size of the remaining tumor (which physical exams suggest is substantially reduced) and to assess the lymph node involvement (I had one previously confirmed by biopsy and two additional abnormal spots on MRI). Aside from shrinking the tumor, the primary goal with chemo has been to get the cancer out of the lymph nodes so I need less nodes removed. There's no way to know for sure until surgery if any are still cancer positive, but the MRI may give a hint.
I also scheduled pre-surgery bloodwork, an EKG to check my heart health, and SAVI seed placement. The SAVI seed is a tiny radioactive marker to be placed with ultrasound guided injection about a week before surgery. This helps the surgeon locate the tumor and potentially involved lymph nodes using a wand outside the body so she can make the incisions in the best possible places and easily find remove the correct tissue. (Yay science! What an awesome invention.) The tumor and lymph node were also marked with metal clips during my biospies, for the surgeon to see once surgery begins.
My surgery was scheduled for Friday, May 10 with a lumpectomy and sentinel lymph node dissection. Once I'm asleep, they will make the incisions and then inject a blue dye and radioactive tracer into the tumor to follow the lymphatic pathways. Using these tracers, the surgeon will remove the first 3 lymph nodes connecting the breast tissue to the rest of my lymph nodes. By removing these, we cut off the pathway for any cancer to travel from that breast to the rest of my body. If the previously biopsied lymph node is not one of these 3, she will remove that also. They will be immediately sent to pathology while the surgeon continues with my lumpectomy, removing the tumor and surrounding tissue to ensure "clean margins" (i.e. no more cancer!) If pathology finds any remaining active cancer cells in the removed lymph nodes, the surgeon will proceed with an axillary node dissection, meaning she'll remove all the lymph nodes from my armpit, ensuring that there is no possibility of remaining cancer cells that could spread. I'm super grateful that pathology can do this assessment on the spot, as it makes it far less likely they would need to go back in for a second surgery to remove more tissue.
We're praying that I don't need more than a handful of lymph nodes removed, as taking them all increases my risk of swelling and/or numbness in that arm and for future injuries, even simple cuts, in that arm or hand to become infected. But whatever we need to do to get rid of the cancer, we'll do. If we are able to go for the more conservative surgery, I'll come home the same day. If I need the full axillary node dissection, I will have a drain installed and will need to stay at the hospital overnight.
About 4 weeks after surgery, I will begin radiation. This could last 3-6 weeks, and I won't know until after surgery. The more lymph nodes involved, the more radiation I will receive.
I'm about halfway through my active treatment, and ready to move onto this next phase. Especially since surgery is what will be curative. So even though treatment won't be over yet, I will technically be CANCER FREE! Soon!
Once cancer treatment gets going, it's really pretty uneventful. Routine kicks in. A "new normal" in some ways. You adjust your mind and your body to what it needs, and you just keep moving forward. My fifth and sixth chemo infusions were just that: uneventful. I switched to a new drug (Taxol) which has less side effects, mostly notably no nausea or digestive discomfort. (Hooray!)
The only real side effect I experienced after these infusions was some muscle and bone pain for about 36 hours. It's uncomfortable, to be sure. The pain in my shins and my lower back felt like they're radiating from the inside out, and it comes in waves. One minute I could be sitting comfortably on the couch, and the next I'm wincing in pain. By the time anyone would notice the look on my face, the pain passes. Overall, this side effect = much more manageable than the previous AC chemo. Beggars can't be choosers.
My last chemo was scheduled for April 5, followed by a meeting with the surgeon to schedule my lumpectomy for sometime in early to mid-May. The hope was this: that the tumor is shrinking; that I'll only need the sentinel lymph nodes removed from under my left arm; that minimal radiation will follow in June and July; that by my birthday, this will all be behind me.
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!
Breast cancer survivor.