Lumpectomy update and the healing process

On Monday, August 15, I had my lumpectomy surgery. In the week leading up to this procedure, I was so anxious. Before my cancer diagnosis, my most complicated medical procedure was having my wisdom teeth removed or my port procedure.

Anticipating what may come next helps me plan, feel prepared, and of course, create some sense of control. With a lumpectomy, there are two knowns: First, I knew there would be an incision and tissue taken from my breast. Second, I knew I would have at least my sentinel lymph nodes removed from my armpit area (each person has anywhere from1-4 sentinel nodes). Much cannot be anticipated; I did not know how much tissue or how many nodes would be removed. My main fear is developing lymphedema, and how the risk increases with each lymph node removed.

For some background, here is more on the lymphatic system (from Johns Hopkins Medicine):

• The lymphatic system is a network of tiny vessels and small, bean-shaped organs called lymph nodes that carry lymph throughout the body. Lymph is a clear, colorless fluid that contains a few blood cells. It starts in many organs and tissues. The lymphatic system is part of your immune system. It helps protect and maintain the fluid balance of your body by filtering and draining lymph and waste products away from each body region. The lymphatic system also helps the body fight infection.

• During surgery for cancer, nearby lymph nodes are often removed. This disrupts the flow of lymph, which can lead to swelling. This is lymphedema.... Swelling can worsen and become severe. Skin sores or other problems can develop. Affected areas are also more likely to become infected.

• When many lymph nodes under the arm have been removed, a woman is at higher risk of lymphedema for the rest of her life. Radiation treatments to the under arm lymph nodes can cause scarring and blockages that further increase the risk of lymphedema. Lymphedema may occur right after surgery or radiation, or months or even years later.

On the early morning of my 8/15 lumpectomy surgery, I checked in to Bozeman Health at 5:45 a.m. with Mike and my Mom. Soon, I was off to imaging for the breast needle localization. The radiologist's team numbed my breast with lidocaine shots. Then, they inserted a needle. A thin, flexible wire was then threaded through the needle into my breast. Once the wire was in the location of the tumor site, the needle was removed. The wire was left in my breast and the excess wire, which was at least ten inches, was taped down. I didn't watch the needle localization. The gal who picked me up for the procedure was clearly nervous for me. She started petting my left hand once the needle localization began. We were not quite synced to the same emotional state/level of anxiety, yet, I appreciated her support.

From there, I was walked to the Nuclear Medicine department. I laid down on an odd, narrow and long plastic bed. Another radiologist injected four shots of nuclear medicine around my nipple. The 'sting' is equivalent to a lidocaine shot, so lidocaine shots are not used for numbing. The four injections inserted radioactive particles that would help dye and map my lymph nodes for the surgeon. Once the injection was done, the radiologist left and I had a fifteen minute wait until we could see if the nuclear medicine had spread enough.

During this wait, I spoke with a man named Aaron. I am not certain of his title, but I think he must have been a sort of nuclear medicine technician. He started out professionally as an illustrator and decided to change paths for something more structured, thus, nuclear medicine. I asked if he enjoyed his job at the hospital. He said he did, and shared that his favorite part is that when patients get to him, they have lived profound challenges and experiences, and he enjoys hearing their perspectives. He asked me what have I experienced and learned. I shared that I understand now that people are deeply good and kind, I have learned that being open to receiving love is powerful and healing, and community---friends and family---is what this life is all worth.

I asked him about his life. He has five sons. The youngest is starting school soon, and he is sad that the childhood pre-school phase is ending. He savors this unique time with his kiddos. Aaron loved sharing about his sons and seemed so proud of who each of them individually are. The whole conversation felt so comforting and open. Throughout all the appointments since March, I have met some fascinating, kind clinicians who I never would have crossed paths with if not for cancer. I think of Dr. Sibbet, who did my biopsy. And Lucy, who was with me for my first MRI. Jamie, who was my first infusion nurse. Madeleine, who was my anesthesiologist at my egg harvest. Dr. Hadley, who placed a post-surgery drain.

I knew that once I left the nuclear medicine room, no stops stood between me and surgery. I am grateful I was able to have a conversation with Aaron. On a day that was much anticipated and had anxiety, our conversation was a grounding and humanizing moment that gave me peace. None of these many unknowns have happened without the support and kindness of medical caregivers.

After fifteen minutes passed, I was placed under a machine that could image if the radioactive dye had spread enough to map my lymph nodes. It had. Aaron animatedly showed me the images of the radioactively-dyed interstate system of my lymph nodes--it looked like a constellation. Then, he helped me into a wheel chair and brought me back to my pre-surgery staging room.

After that, I don't remember too much. Mike and Mom were in the room with me. Dr. Kronfuss stopped by. Then the anesthesiologist stopped in and injected something into my IV line. Then, I was wheeled into the operating room. I remember seeing the colorful head covers of two nurses, and that was it. No conversations, no "count back from 100 by sevens." I was out.

During the surgery, Dr. Kronfuss made two incisions. One was on my breast. This incision was used to take the tissue out around where the tumor was, and take a bit of extra tissue to establish a clean perimeter-, aka a "cancer-free" zone. Then, a second incision was made below my right armpit. From there, Dr. Kronfuss removed my sentinel lymph nodes. I only had one sentinel lymph node, which I feel quite lucky about. The node was immediately sent to pathology, during surgery, to see if it had cancer. If no cancer was found, the surgery ended. If the node had cancer, they'd continue down the line of nodes, and remove and test each one until clean nodes were found.

When I came to, I was with another nurse in the original staging room. I wish I could remember her name. She had a steady presence, wore a pair of mountain-lake-blue scrubs and was kind. At some point, Dr. Kronfuss came back, and I answered questions, but I have no memory of the conversation. I don't remember when I realized I only had to have one lymph node removed, or who told me. Or, when I realized that my one removed lymph node was tested and showed no cancer. I don't remember the moment when my sisters were allowed to come into the room. My mom, who does lymphatic massage, was ecstatic that only one lymph node was removed. This means my chance of developing lymphedema is low. Radiation can impact the risk of lymphedema, but that's a road for the future to walk.

At some point, I remember noting that it was around 2pm. I thought that this meant we'd all spent way too many hours waiting in the hospital. The nurse in the blue scrubs said if I was okay to walk, I could head home. I swung my legs over the bed and walked out of the room to quickly show I was fine and ready to go. They released me.

For the next two days, I wore the wrappings I came out of surgery with. Flexible bandages went around most of my torso. Frankly, it was fantastic having this snug wrap. I didn't need to worry about a bra, I just couldn't shower, which is no bother with short (read "no") hair. I learned from my egg harvest to stay on top of pain medications, and I don't remember any massive discomfort besides pulling car doors shut, which was painful. That said, I am understanding much more clearly how my mind forgets painful moments. So, either way, however it was, I made it through.

On Wednesday, Mom and I went back to Bozeman for chemo #8. I was taken care of by an infusion nurse named Jessica. Since I started getting chemo infusions back in March, I feel the difference in the infusion clinic. I never slept well before my six cytotoxic chemo infusions, but I always looked forward to seeing the infusion nurses. Each nurse has mentally and emotionally fortified me with their care and kindness. Now, the nurses have less time to chat and walk faster to manage more patients. There doesn't seem to be the same calm rhythm of volunteers either. The same staffing shortages and COVID burnout seem to be hitting my infusion clinic. Abby, who has become one of my most consistent chemo nurses, and who has an open, wonderful, quirky sense of humor, shared that this day was "goodbye" as she was taking a position at the newly-opened Billings Health Clinic in Bozeman.

When we got home to Helena, Mike helped me take off my surgical wrappings. From before surgery, I wanted and needed him to be with me for this first time I would see what actually occurred during surgery. I didn't know how I would look or if I would have a sunken crater of removed skin. In the pre-op appointments, I said I didn't care how I looked, and extra tissue could be judiciously taken--whatever was necessary to make a clean perimeter.

Dr. Kronfuss did amazingly--she made the breast incision along the border of my nipple. Today, the scar is blending in and healing well. There are no visible indents from the tissues taken. I couldn't have imagined that my breast could still look how it was before surgery. It was a lung-expanding relief to be able to see the scars. Especially with so little memory of the surgery or that entire day, it was more grounding to have evidence/proof of what happened.

The next day, Thursday, August 18, was a big day. This was the post-op appointment that would offer the first pathology update since my February biopsy. This appointment would gauge how effective the cytotoxic chemotherapies had been. Between Monday at surgery and this Thursday post-op appointment, my breast tissue had been tested for cancer cells. Between March and August 15, there were no pathological updates besides manually feeling the tumor shrink. Mike, my mom and I were on the telehealth appointment with Dr. Kronfuss. She shared the pathology update: "Complete Pathological Response." A "complete pathological response" is best possible outcome from a lumpectomy. It means that from all the tissues taken, no cancer cells were found.

I was not prepared for the Best Possible Outcome. I felt shook. I just held my face in my hands. The news wasn't registering. My reaction surprised me. I didn't laugh. I think I teared up. But it wasn't some elated, jubilant dancing moment. I didn't want to hold hope that this would be the outcome, in case it wasn't. I was prepared to hear the news that there were still cancer cells and I was ready to surge my mental energy to keep fighting, to ask for the next most aggressive chemo if any cancer cells remained.

At 2:00 a.m. that night, I was researching everything "HER2 positive" and "complete pathological response" (CPR) to vet out any negative footnotes and wrap my hands around what this really meant. From a medical perspective, again, it's the best possible outcome. It can't confirm that there are no other cancer cells, because more tissue wasn't sampled, but, it means that the most strategic tissues were sampled to get the most complete mapping of if cancer cells remain.

And with this Best Possible News, I felt no desire to share this widely. This really surprised me. It was unsettling. After all these weeks of adapting, suffering, healing, sliding backwards, getting more bruises, and feeling the awakenings of me returning to me, I realize I didn't imagine these weeks were going to an August 18th finish line (more on a "finish line" below. I'm not yet to mine, but I am through another stage and onto the next level).

The next day, I went up to the TR trail, which can be a short hike that is not too popular and has easy views. I needed to sit with the mountain, away from others, and be alone with my thoughts so I could begin to see and understand myself. I wanted to write my thoughts down. I didn't understand why I wasn't freed by this positive news. But, my pen I packed had dried up, so I ended up sitting on a saddle, and going through the surprisingly therapeutic act of saying my thoughts aloud and recording them.

From sitting on the mountain, I understood that this news created a slap of dissonance. If cancer cells weren't done, am I cancer free and am I done? If I am still in cancer treatment through February 2023 (which I will be), and still have blood draws, antibody treatment infusions, and radiation, am I free of cancer? If I am free of cancer, why am I still in the consequences of cancer treatment? Is the process over?

My panic also flared because I am not done healing. I cannot unequivocally know that there is no more cancer, yet I take peace that no known cancer cells can be found. I have never had a PET scan. But, I will go through radiation still and have tri-weekly chemo "lite" with antibody treatments to obliterate any chance of cancer cells. I will still get echocardiograms to make sure the Herceptin chemo is not damaging my heart. The same beat that I've been walking to since meeting my oncologist on March 10 still goes on, just with this fresh dose of positive news.

When I got diagnosed on March 1, I wanted to take hold of my life more through this process---fight for myself and give my mind the chance to become very clear about where I would put my energy, how I would spend my days, what I would no longer support, and what I would prioritize. I was burnt out before I knew I would go through the rigors of cancer treatment. When I got the news that I had cancer, I thought:

1. Okay, I am in the best shape of my life, mentally and physically; I can do this.

2. Gratitude that I was Stage 1A, grade 3, and this was caught early, and

3. Now, I can rest. I realized how twisted this thought was---"I have cancer, and now I'll get a chance to rest." Cancer, and its havoc that induces fatigue and the need for rest -should not be the repose I crave from burnout and hyper-productivity.

And unsurprisingly, over the course of treatment these last six months, I haven't had the chance to reach the grand, guiding conclusions that I was hoping to find. Also, I wanted the chance to rest. In 2020 and 2021, I logged too many 50 or 60-hour weeks and felt the stress of being largely understaffed in a healthcare support position during the pandemic. I don't want to get through cancer and be more tired than I was before chemo. The reality is that once I go back to work, I will have no accumulated time to take off. Cancer treatment has depleted my comp time, vacation leave, and sick leave. I feel pressure to be as rested and healed as I can before I go back to full-time and in-person work because taking this time to heal will be more complicated once I return.

To help myself get through side effects and rest, in June I cut my work hours back to 25 telework hours a week. I've used those 15 "free" hours to sleep in, work five hours, take a long nap, and then I'd have some of the evening before dinner with Mike, and the time after dinner before bed with him.

My last cytotoxic chemo (the heaviest and most skin-crawling chemo I will have) was July 6 and I can feel that my mind is coming back to me, but I still forget things and have to hold onto thoughts more tightly so I can continue with them. Sleep has become better, it still can be challenging, but some days I can feel that sleep is now something that helps restore me and isn't a dark fight each night. I also now feel like I have a personality, can track conversations better, and have mental acumen to be 'alive' enough to make jokes. Since cutting back work, I have used these 15 hours to catch and steady my breath, and start to give myself the chance to heal and feel whole, in some way, again. And I have rested, but I am not rested, restored, or healed.

I keep asking myself, "What is required to heal?" How do I heal from the physical, mental, and emotional impacts of cancer? My social worker defined these past few months as a medical trauma. As a cancer patient, there is no pamphlet or 5-step guide to healing. I must figure out for myself, and uniquely for myself, what it takes to heal. And, like every phase of cancer, I get so much unsolicited advice on what to do to heal. Eat this diet. Don't eat that food. Take this supplement. Don't be active. Do be active. Et cetera and et cetera and et cetera.

I realize I thought that with 15 hours less of work a week, I could use this time to heal. Even with cancer, I have tried to productize healing. That, though, is too much pressure and multi-tasking. I have used this time to rest. But I am not healed.

On that August 18 hike, I felt panic that I may not be able to carve out the time to heal if I had a Complete Pathological Response. I, too easily, can become a workaholic. My team is also understaffed. We all work hard, but we never leave a job undone. We do not take lunch breaks or walk breaks. Vacations are rare. For the past two years, I have not used my full vacation leave and so, I used these hours meant for rejuvenation instead for chemotherapy and sick days. I have broken every "don't be a workaholic" boundary that I have tried to set. I have a phenomenally supportive team and I know that healing may not be possible once I return full-time to working in the office.

Since that August 18 hike, I feel steadier that I can trust that I will let myself take the time to heal before I return to pre-cancer rhythms, demands, expectations, and habits. In the month since my surgery, I have begun to see more of the mental scars that I also need to tenderly see and recognize.

Going through cancer, I have begun to worry and care less about public perception---those real and those I create. I don't care if my public baldness signifies something, I will go bald if that's what I want. I don't care if I sleep late or sleep 14 hours. I don't judge myself if I stopped following a conversation. I see now that the panic and uncertainty that came from learning I had a complete pathological response stemmed from fear that this could incorrectly publicly signify I am "done" with cancer. I stand now unconcerned with what this news may mean to others. For me, it means the cytotoxic chemo phase did its job. My body survived this challenge, and the cancer did not. Now, my job is to keep holding up the truths of recovery, embrace radiation, and begin to regain strength.

There will be more challenges and growth ahead, and my energies are focused on my needs.

---

Speaking of growth, 0n August 26-28, I went to a Casting for Recovery retreat. This retreat brings breast cancer patients and survivors together around a theme of fly fishing. The fly fishing was great and I enjoyed learning about the bugs, knots to tie, and techniques. During the worst of chemo, Mike and I would go to the Blackfoot. He'd feed his soul by flyfishing. And I'd feed mine by taking in the trees, listening to the sound of the water moving, seeing the mountains, and, eventually, napping on the river banks. During the Casting for Recovery weekend, which I hope I'll revisit with a standalone blog, women from all stages and years of treatment, journey, recovery, and reoccurrence came together. The staff created a deeply intentional weekend. So, yes, I learned more about fly fishing, but I also gained a community of women and sisters who understand. I also had the chance to set down some of my anger and sorrows around cancer, with no judgment, and received such deep, direct, love and compassion.

After hearing the "Complete Pathological Response" news from Dr. Kronfuss, soon after I had a dream that cancer had come back in my left breast and I would need a mastectomy amputation. My cancer nightmares didn't even wait until the end of treatment to surface.

Since the Casting for Recovery weekend, my anxiety and fear of reoccurrence has not been colonizing my energy, the middle of my nights, or my waking hours. We talked about reoccurrence as a group and with two fantastic oncology nurses. Now, I know that facing a future where I want to be as proactive as I can be, and live without fear, I know that I will do enough.

• I will make healthy enough decisions, and in the days, months, and years ahead, I will love my body, nourish it, and become strong again.

• I will sharpen my already-healthy eating habits.

• I already know I will rejoice in my body and seize upon the chance to regain strength and power.

• If I have a reoccurrence, I will enter it knowing I have made my mind, body, and spirit primed to know I am ready and strong to walk this again.

• I have peace knowing that cancer treatment will continue to evolve in precision. In five years and in every year to come, treatments will continue to evolve and improve.

• I cannot control if a reoccurrence happens, but if it does, I will know that I have loved every cell of my body and I have deeply seized the opportunities to be alive in and empower my body for whatever may be ahead.

The week after the retreat, I had a bevvy of appointments: speech pathology to assess chemo brain and memory concerns, an echocardiograph, a primary care appointment, an appointment with my naturopathic doctor, and on Thursday, my first radiology appointment at St. Peter's. The week became shaped though by some post-surgery complications that began Tuesday. On Tuesday night, my surgery arm became incredibly painful. I couldn't sleep and any movement surged pain. I couldn't dress myself or pull a bra or shirt over my head. It was the oddest experience. Overnight, I could not raise my right arm straight out or above my head.

When I met with my St. Peter's radiologist, Dr. Cupino, on Thursday, to set up and stage for radiation, I could not get my right arm behind my head, which is necessary to get a CT scan for staging. Dr. Cupino very calmly said "That's okay, but we won't be staging today. Let's check on that PT referral." His team walked me over to PT, and I had an appointment set up for the next morning.

My Friday PT appointment was amazing. The physical therapist is also a cancer survivor. Most of the hour was spent focused on moving lymph and working on scar tissue. By the end of the hour, I could get my arm where I could reach behind my head (which I must be able to do for the CT scan). Mike and I had talked about going camping, but since I couldn't sleep without pain or dress myself easily, tent camping wasn't a good idea. With the progress made with PT (and a new assignment of stretches), we headed out camping after work.

We spent the next three days alongside the Blackfoot River. We showed up at the campground later than is ideal on a holiday weekend, but luckily, we were able to share a campsite with two bikers traveling the Continental Divide Trail toward Yellowstone National Park. The next day, we walked the river and fished. At each new section, Mike would ask me what I saw---where did I think fish would be resting and eating. His ability to read the rivers is beautiful and I love learning how to "see" rivers.

To my great surprise, I actually caught a fish---my first on a fly rod. I have learned you should let line out when a fish runs, and reel in when they come toward you. I was ready for a fight, but my first catch was a smaller cut throat trout, so there wasn't a dramatic run. Mike ushered the fish into the net and the fish was just beautiful! As I was taught at Casting for Recovery, I thanked the fish, Mike loosened the unbarbed hook, and back to the river the fish returned.

Over the next days, it was healing to have time outdoors with just the two of us and our two good dogs. We haven't had many chances to do the things we most love sharing together. We waded rivers, threw the stick to Tippet’s constant delight, and I am so proud how comfortable Jake is getting in deeper waters. We ate slow meals, we slept with the sounds of the Blackfoot in our ears, we read in the hammock and on the river banks, we saw the first golden leaves drift down, and we rested. I was able to write and it always feels to good to write without time constraints, and just journal until I am done.

On Monday morning, Mike headed out to fish a bend he'd been eyeing. I offered to pack up camp and planned to read until he got back. Unfortunately, when I went to change, I noticed the sweatshirt I'd slept in had some dried texture on it from where my biggest lumpectomy incision was. I undressed and the cut was clearly infected. We packed up, I put on Neosporin, and we headed back to Helena. At Urgent Care, they cleaned the wound, took a culture, and advised me to go straight to the ER and called to brief the providers.

At the ER, I received great care. The infection was clear, and they drew a perimeter to delineate the infection's reach. They ended up giving me lidocaine shots, an IV, and lanced open the scar to let the pus and liquid out. I left with wound care instructions, antibiotics, and wound packing material.

With the scar opened up, this would mark the beginning of a lot of adjustments. Radiation, which I was hoping to start by mid September, is postponed until the scar is healed.

Two days after leaving the ER, I was back to Bozeman for chemo where I got the culture results and learned that the infection was a staph infection. I stayed overnight with friends, and on Thursday, my surgeon assessed the scar. She ordered a sonogram that day. From there, I learned I also had fluid collecting in my breast from the breast incision. Straight from the sonogram, I went to radiology. There was an option to aspirate liquid and/or put in a drain--I didn't know which I would have.

In radiology, I had to have fluid aspirated and a drain installed. A white tube now ran from my breast to a bulb that connected fluid. I definitely did not want a drain. The idea of tubes coming out of my body felt grotesque. Underneath this apprehension, I also felt gratitude that if I was going to get an infection or have post-surgery complications, it was happening when I wasn't neutropenic and had enough of an immune system to be fine.

But, on the table while getting the drain, I just felt sad that another procedure, unplanned, was needed, and that momentum toward radiation's completion was stalled. The doctor, Dr. Hadley, said to say anything if I felt pain. After the lidocaine shots, I didn't, but I did say, "I just want you to know that I am not in pain but I am getting emotional." The amazing Dr. Hadley said, "Katie, in this room, we deal with humans and bodies. And emotions are part of that, so please let them out." I cried some frustrated, sad tears that I'd now have a drain, and felt much better for it. At the end, we swapped some book recommendations, and the doctor called in the Bozeman wound care team to look at the open incision under my arm.

The wound clinic director, Dr. Hoge, measured the wound's dimensions, and showed me how to pack and dress the wound. She took a video so I could show Mike. I asked her how long it may take to heal. She said that with the wound's depths, I was a good candidate for a wound vac to fast-track healing. She sent a referral to St. Peter's for a wound care appointment, and I drove the 100 miles home.

Long story short, St. Peter's disagreed that a wound vac was necessary. They said I would need at least six weeks to heal (which would push radiation into November). They asked me to convey the appointment's info back to my Bozeman Health surgeon and to my St. Peter's radiologist. I asked that, since I did not have a full medical grasp on all the info they shared, I was not comfortable navigating info between providers. I did not feel comfortable asking my Bozeman surgeon when the drain should be removed, and then convey this back to the St. Peter's doc to remove the drain. I didn't even know if they were familiar with the type of drain I had. The lack of coordination between health care systems continues to surprise me.

So, with that, I called back Bozeman Health to see if I could transfer my wound care back to Bozeman. They were able to, so I switched my care over and now have had a wound vac for five days. Last Thursday, I had the wound vac placed and I was also able to have the drain removed, swapping one set of tubing for another.

Today I drove back to Bozeman Health's wound clinic for my first check-in on the wound vac and to see my incision's healing progress. The depth of the wound has gone from 1.9 cm to 1.3 cm in four days. The nurse thought I may be able to remove the wound vac in 2-3 weeks. It has a longer tube, so it feels more secure than the drain, which I always feared I could accidentally pull out. The wound vac creates a sterile suction to heal the incision from the inside out. The vacuum is housed in a small black side bag and I charge it at night while I am sleeping. So far, I've only walked away from it a handful of times, but never too far or too hard.

I go back to St. Peter's tomorrow to complete radiation staging. Soon, I'll have an updated timeline on when radiation may begin (and end).

My goals for the next weeks are to be more creative with getting out and moving. I am pretty anxious to be able to run ("run"), but for now, I am going to take satisfaction in whatever movement I can safely do, even if it's an urban walk or no-arm workouts. Mentally, I was quite sad that these complications would push radiation back. I've been over-concentrated on starting radiation and pushing through it so I can start moving more again. For six weeks after the lumpectomy, I am not allowed to lift more than 15 total pounds and I've been tender with wearing sports bras because of the two incisions. I had this goal of starting back with weights to regain strength and stability to play indoor soccer this December. This goal--playing some sort of soccer this winter--was ambitious, but I love my soccer community and have missed them this whole year. That said, this timeline is no longer realistic.

Also, I realize I haven't had too many 2-steps-forward-5-steps-back experiences in my treatment until these post-surgery complications hiccuped their way to the surface. I understand why I reacted with sadness and frustration---I want goals again, and these delays created ambiguity and delays. I am not sure how I will respond to any future setbacks, and at least I'll have these past few weeks to draw perspective from.