"Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow."
- Dorothy Thompson (on a plaque in the infusion clinic)
Round 6 is done! Two weeks ago, July 6, I now know was my last heavy duty chemo. I found this out last Thursday, July 14. But first, here's what I remember from my last post to today.
In the survival mode of chemo and cancer, both round four and five seem so far away. Plus, add in chemo brain and it's very easy to forget. And, looking back now, I think it's necessary to forget.
Round 4 (on May 25)
I began developing abscesses. Because I was neutropenic, my oncology team said they wanted to see me in-person so I made the drive to Bozeman. In response, I was put on high doses of doxycycline, an antibiotic. The abscesses cleared up fairly quickly. It was stressful to experience such an odd skin issue for the first time, and knowing my immune system was compromised. My fear was a staph infection.
I had my first meeting at my May 25 chemo appointment with my oncologist, Dr. Hancock, since meeting him on March 10. I asked for this appointment and was relieved to hear Dr. Hancock's always algorithmic approach that assured me treatment was going as planned.
My pre-chemo bloodwork came back with my neutrophil count at 1,400---I was more neutropenic than round 3. Dr. Hancock okay'ed me to continue forward with chemo. Once in the infusion clinic, there was about a 90-minute delay delay while we waited for the infusion team and chemo pharmacists to confirm that my oncologist had actually approved that I could still receive chemo with my low counts.
My sisters Erin and Mary came to my chemo infusion appointment. My wonderful chemo nurses were Somer (at the beginning) and Haley, at the end. I tried to not jump when the Neulasta shot inserted into my arm. Because of the delays, Mary and I were the last ones in the chemo clinic. In anticipation, we played Lizzo and I moved around, trying to not anticipate the catheter inserting into my arm. It snaps like a rubber band. When it began its clicking and long countdown, I tried not to anticipate. I still jumped. (The Neulasta shot is an on-arm shot that uses a catheter system to deliver a shot 27 hours after chemo ends. The bone marrow stimulant that helps the body make white blood cells after receiving chemo.). We came to Bozeman the night before and turned the trip into a sister's trip. Again, time with loved ones is strengthening, calming, and healing!
The weekend after chemo, Mike and I went to his family's Red Lodge cabin for Memorial Day. I journaled that my lungs and heart felt compacted thickly into my chest. Fatigue was heavy and my mind felt untied, my personality pale, and my body weak. It rained and snowed throughout the weekend. The chance to gather, be with loved ones and share meals, read books, and nap was healing. Each night, we slept with the door open to let in the cool creekside air and the sounds of Rock Creek; I slept so well these three nights.
On this round, hot flashes made sleep delusional. Not sleeping pushed me to the verge, and a bit over, into depression. I developed a "witching hour" where I would wake up between 2:30-3:30 a.m. and be unable to go back to sleep until after 6:00 a.m. The lack of sleep impacted mental balance more than any other symptom.
My VA friends held a fundraiser for me the Saturday before chemo my fifth chemo. During the three weeks before round five, I stayed home and minimized my time in the public because with such low neutrophil counts, I was at risk for viruses. My only outings were to see family, meet on a friend's porch, or go to the grocery store. This was more isolating and I was already dealing with sleep deprivation. These human moments of gathering, love, and friendship were like oxygen. It was so good to see so many friends from work and get the chance to reconnect.
Round 5 (June 15)
Monday before chemo, I woke up at 3:00 a.m. and couldn't go back to sleep. At 5:30, I gave up being in bed and took Jake for a walk. I felt so hopeless. Mentally, after so many sleep-starved nights, I couldn't see how I could do another three weeks. During the walk, I couldn't mentally wipe the depression. At 6:00, I called my Central Time friend, Vanessa, knowing I needed to connect immediately with a loved one or I was going to sink. Vanessa picked up and our conversations lifted my spirits.
That same Monday, my mom and I drove to Bozeman for an appointment with Dr. Kronfuss. I first met Dr. Kronfuss on March 10, right after I met my oncologist, Dr. Hancock. At this original appointment, I felt immediate love for Dr. Kronfuss. I'd never felt such instant trust and confidence in a provider before. Dr. Kronfuss calmly and openly laid out the advantages and disadvantages between the options of a masectomy and lumpectomy. In speaking with her, I made the decision to have neo-adjuvant chemo (meaning, chemo before surgery) with the later goal of a lumpectomy. She is a cancer survivor and her mannerisms, presence, and warmth gave me total peace in the path ahead. At this appointment, she asked me how I was doing with treatment. I shared that I wasn't sleeping and was feeling defeated. We had an honest conversation and I asked her how she got through to the end of chemo as the symptoms weighed heavier. It's funny---we didn't discuss anything that created a new mental path. She shared that she found a comedy to binge and enjoy in the midst of the fatigue. She shared she was proud of me--I can do these final three weeks. I left this appointment much more grounded that what was ahead was temporary and doable, and with gratitude for survivors and healers like Dr. Kronfuss.
That evening, the McGregor clan hosted my mom and I. And, as normal at the McGregor's, you laugh often and feel so welcomed; I actually slept well the night before chemo. It felt so good to simply catch up and hear about loved ones living outside of the constants of cancer. Trail running. Window installs. Retirement projects. Laughter. Totally Normal Conversations and Real, Normal, Things. One of the greatest benefits of cancer are these chances to connect with incredible people.
At this appointment, the PA I normally see (after I get bloodwork done that can be reviewed) before chemo noted my continual decline of neutrophil counts (down from 1,400 to 1,200. If I dropped below 1,000, I would have to delay chemo). At this appointment, it was decided that I would stop using the Neulasta on-arm shot. I've had this shot affixed to my arm at the end of each chemo appointment. Then, 27 hours later, the on-arm device, via a catheter, administers a shot to help with white blood cell counts. This helps avoid going back into the hospital. Starting with round 5, the decision was made to have the shot administered in-person at St. Peter's hospital to ensure it was correctly administered.
My mom traveled down with me for this chemo infusion. I really needed her after the cumulation of sleepless nights and increasing sadness and overwhelm. I was so grateful for the drive down and gentle time with her. Wherever I am, whatever I am feeling--even if it's not pretty-- my mom is always there. She was there with me the day after my diagnosis. I slept on the couch and she cooked a chicken for soup. One of my first days of deep fatigue and sadness, she came over and we walked to the nearby park and just laid in the grass, looking at the clouds. On this trip, I was excited to share a gift certificate to a Bozeman spa with this incredible woman and we treated ourselves to facials.
At the infusion clinic, I had the excellent chemo nurse, Haley, and was also cared for by the amazing volunteer, Marilyn. When I had my ice mitts and booties on while receiving Taxotere, Marilyn brought me warm blankets every twenty minutes and wrapped me like a burrito. I left chemo tired and felt much love.
On June 24, the Supreme Court overturned Roe v. Wade. This impacts me because, first, I don't want any person to be forced to give birth. I don't want any person to have the state tell them when they can or cannot become a parent (and then shame them for having a child while providing zero medical, emotional, financial, maternity/paternity leave, or community support for healthcare and the actual life of the child). There is no dignity in forced births. I don't want people to die while politicians decide if their ectopic pregnancy deserves medically critical treatment. From my own experiences, I wrote about how this could impact me as an oncology patient and also as a woman who froze eggs and plans to go forward with IVF in the future at this post, Women Will Suffer and Die: The Fall of Roe is Personal.
Round 6
The day before chemo and the day we drove to Bozeman, I went to St. Peter's at 8:00 a.m. to get my bloodwork ran. At 2:00 p.m., I had an oncology telehealth appointment to review my bloodwork. Getting the Neulasta on-arm shot replaced by an in-person shot worked --- My neutrophil levels increased from 1,200 to 1,400 and I was okayed to come down for chemo.
I had no problem sleeping the night before. I wanted to run to this final chemo appointment.
Both my parents came with me for this (fingers crossed) final chemo round. Abby was my chemo nurse. One blood panel was not collected when I went to St. Peter's, so we had a 90-minute delay in the infusion clinic before I could begin. Earlier, we'd walked to Pete's Hill before heading into the hospital. Once in for an appointment with Dr. Hancock, we had about a thirty-minute wait in the exam room. Normally, waits don't agitate me. Things happen. But waiting in the infusion clinic, I felt so shallow-breathed and agitated to get started. Each time I walk into the clinic, I look forward to seeing the nurses who have cared for me before---the clinic has become a calm environment. But the buildup to treatment always provokes anxiety and the idea of sitting in the chair for an hour, hearing the beeping of other infusion machines, and not receiving treatment just sounded surprisingly overwhelming. Dad and I walked to the cafeteria for an early lunch during this waiting period and oh, I needed the reset and re-grounding. Coming back, I was ready to begin.
Dad and I played cribbage, and soon after, the Benadryl had me in and out of sleep.
Mom took the second shift. Toward the end, I was awake and it felt so good to watch the final drips of the chemo bags run out, and then wait for the beeping announcing the end.
Dad and Mom and I all hugged outside the Bozeman Health Cancer Center parking lot. Dad, the master of snack food, had a bag of Cheetos in the truck to celebrate (Cheeto's are my unapologetic, highly processed vice, and he knows it!) I definitely got surges of energy on the 100-mile drive home. For the first time, I started thinking about what is ahead. I couldn't stop talking about it. Soon, I won't be neutropenic and I can socialize more without wondering if I'm compromising myself. Mike and I can go on dates and I will properly introduce him to Helena. I will have nose hairs and regular GI weeks. I will sleep through the night. I will be able to hike and run with strong lungs and without getting dizzy. My memory and personality will be re-energized. I can travel. Hot flashes will be a thing of the past until menopause. And so much more.
When we pulled onto my street, Mike, Erin, Ryan, Mary, Teagan, Owen, Quinn, Don and Gina were all waiting. Owen was standing lookout and they formed a tunnel (like those we did after childhood soccer matches) for me to run through. I won't ever forget how good it felt to tell the kiddos, "We did it!"
Gina, Mary, and Mike decorated. Gina even got Park Avenue's Earl Grey cake--which is exactly how I wanted to celebrate the end of chemo. There definitely was champagne. I am so grateful I got to celebrate this moment with my family. I felt elated.
The effervescent energy post-chemo soon switched out for chemo fatigue. Thursday and Friday I crashed hard and slept most of the day. This round, I have felt more physical and mental fatigue. It's odd--small movements that shouldn't impact me, like walking up half of the Carroll College hill, make me collect myself, calm my breath and body, before going onward. On a flat part of a slow hike, I got dizzy. On a day when I felt energetic (maybe more mentally energetic than physically), I decided to walk the two or so miles home after an oil change. It took me an hour and a half and I stopped in each shady spot and embraced the slowness, took my time, and used the rest periods to call friends.
My mind is willing but my body goes through such quick changes, it's hard to calibrate the two. I feel the closest thing to this must be aging. Do 80-year-olds feel this way? Where they have the muscle memory of all the movement of their life but then their body just can't do it? It is incredibly humbling. It creates a need for stillness to feel, assess, and understand what my body is saying.
On Thursday, July 14, I went back to Bozeman for an MRI and pre-op appointment with Dr. Kronfuss. We started the day in Advanced Imaging's waiting room. It felt incredible to bring my first memories of cancer full circle. I showed Mom where Mike and I sat on the third day after my diagnosis. That day, we were going to get the first MRI look at my cancer. Mike held my hand and said, "Today the healing begin." His words set the alignment and rhythm for all the appointments to come. This time, the July 14 MRI would assess how my tumor responded to chemo and, again, see if there was lymph node spread.
I felt calm in the MRI machine. It feels meditational. To not focus on the loud honking, whirring, machine sounds, I focus on my loved ones. I hold each person in my mind, think about what I wish for them, and what I admire most about them.
In Dr. Kronfuss's office, my vitals were taken, she asked how treatment was going, and then brought out my MRI results. "This is good news!" she started with. "Dramatically decreased" was the assessment of my tumor. On the question of visible cancer in my lymph nodes, the report stated, "No appreciable evidence of adenopathy... No suggestion of adenopathy." Adenopathy signifies swollen lymph nodes. Simply, there is not evidence of cancer in my lymph nodes.
More pathology will be available during and after my August 15 lumpectomy surgery. There will be two significant incisions: one in my right breast that has the goal of taking out tissue from the tumor area and creating clean perimeters. I understand this as basically, cutting the tumor out.
The second incision will be in my right armpit. Dr. Kronfuss will remove however many sentinel lymph nodes I have -- this can be anywhere from 1-4 nodes. These nodes will be immediately tested by pathology for the presence of cancer. If there is no cancer, the surgery ends. If there is cancer, Dr. Kronfuss will continue down the strings of lymph nodes until she finds clean lymph nodes. So, the MRI is good news though not 100% definitive. Still, it feels so good to receive news like last Thursday's and feel the mental shift push towards the future.
Patience is not my virtue, and I am working to grow my ability to be in ambiguity. I don't want to over-research anything, because I think that will just lead to suffering and sleepless hours during the night. So, I am not researching the surgery any more, not looking into post-chemo recovery, etc., etc.
Up next, I have another infusion at the cancer clinic on July 27. I understand that this chemo infusion is "softer-esque" than the first six rounds. I believe it should only be Perjeta and Herceptin. Herceptin and Perjeta are HER2-targeted antibody treatments. It is still chemotherapy, but from others who have gone through HER2 positive cancer, I have learned it should not have the bevvy of side effects as my first six rounds of chemo.
Then, it's surgery, post-op, and radiation. I'll keep going to Bozeman every three weeks for my 'softer' chemo of Perjeta and Herceptin until February 22, 2023 (but who is counting?!).
Katie, your spirit is so inspiring. Amy and I look forward to one of those nights out with you and Mike soon!