Dream legs – that phenomenon of being in a dream, and trying to run quickly, but not getting anywhere. No matter the urgency or effort, you cannot get ahead. The horizon doesn’t near; there is no sense of forward movement. Dream legs can happen in reality, too. When we are trudging through the swamp of adversity, it feels like we’re not making any progress. Once you’ve thought you’ve moved ahead, the horizon has only pushed back equal to your steps.
Dream legs – how living with breast cancer feels to me.
The diagnosis was one of the hardest parts; the surgery and recovery were like a marathon I had to physically fight my way through. I moved closer to the horizon when I had my bilateral mastectomy almost three weeks ago, but once I marked that step, I realized now is when the hard work begins. Now is when things are going to really get tough. Now is when I start nearly five months of chemotherapy, and the thought gives me dream legs.
I got my drains out on Friday, March 13, which felt amazing after sixteen days with them. Well, it didn’t feel amazing when they were actually being removed; that hurt a lot – but only for several seconds. Being free of these drainage tubes? Ecstatic. I didn’t have much time to celebrate getting them out, however, as I met with my medical oncologist that same day. That meeting took the little wind I had right out of my sails.
Suddenly, but not surprisingly, it was time to start the next step of treatment. The surgery ship had sailed; the recovery time had ended. This next voyage seems like the hardest part.
I received so much information from the doctor about my chemo plan. Initially, they had thought I might need surgery, radiation, and then a two-month chemo cycle. After the new pathology report from surgery, however, my treatment plan changed, which I clearly understood would happen.
A 20-week chemo cycle, with three different drugs – Adriamycin, Taxol, and Cytoxan, was elucidated to me. I would get some bloodwork that day for baseline readings of things like white blood cell counts and platelets; I would need to get a MUGA scan to assess the strength of my heart. I would need to get a port implanted in my chest for chemo infusions. That surgery would be under twilight anesthesia, and was scheduled for March 25. The radiation oncologist later informed me that I was to have five weeks of radiation after chemotherapy. I envisioned myself trudging with dream legs through a mire of ugliness.
I went from healing from my mastectomy to preparing for chemo pretty quickly. Though I’d known it loomed ahead, I wasn’t sure what exactly lay next until this appointment. It was a bit of a tough one. My husband Ron sat patiently with me as we both took in all of the information. Though I’d been healing from surgery and knew there was a lot more to come, it was overwhelming to get dates and times laid out.
I left feeling like I hated this place; every time I left, I had worse information than before.
I was deflated. And literally, too, as my expanders had lost some air since the surgery. I would have to wait to determine if I was getting radiation before I could have the expanders filled with saline; the plastic surgeon will need to know soon, as radiation affects the chest skin and what size I can be.
I was really angry and depressed that night. I’d been so excited about getting my drains out, and all of that energy had been sapped. Chemo scares the heck out of me, like many other cancer patients feel. There are so many unknowns – how will I respond, will I have terrible nausea and vomiting, will I have that terrible bone pain I was told about; the list goes on. Though I have a general idea of the side effects, everyone reacts differently. The very thought of it is claustrophobic: I will have to sit still for two hours while poison is pumped through a port in my chest to my bloodstream. It’s hard for me to sit still for two hours, let alone while I have an infusion coming in through my chest. I am really not looking forward to it.
Mostly, I’m not looking forward to the side effects. I will see how I respond, but no matter what, it’s sure to be an uncomfortable and challenging experience. Losing my hair? I am really sad about that; it’s part of my identity, my image, my sense of beauty. I’ve had long hair most of my adult life, and I’m attached to it on a vain level. Perhaps I will be open and strong enough to redefine a new sense of beauty for myself, but right now, I’m envisioning myself having a really hard time with losing my hair. I recently cut it shorter to start getting used to having less of it. Though I’m trying cold-caps, there’s no guarantee they’ll work.
I feel like I’m only about to start the really hard work, the excruciating part. I thought I’d made some progress with surgery, but I feel my dream legs slogging through the swampy mire of chemo. I could apply my athleticism to my surgery and recovery, a bit, but I’m not sure how much it will help me through chemo. I plan to exercise as much as possible, but I really won’t know how much until it starts.
I imagine there will be times I feel like the horizon is moving back; like I am getting nowhere. I don’t want to get stuck in the mud, for my spirit to get stuck in the heaviness of chemo and its side effects. I don’t want to sink in the quicksand.
I am terrified of chemo, but there’s only one way to get past that – and that’s to get started. For now, that may mean waiting a few more weeks. I may be walking with dream legs toward a moving horizon, though I am happy to be walking at all.
It’s been three weeks since surgery; today is Wednesday, March 18, 2020. Tomorrow is the Vernal Equinox, though Monday was our true equinox for the Santa Cruz area (the sun rose and set at 7:17, making for equal day and night). I am feeling pretty good overall; no nerve pain, not much tightness, and I have almost all range of motion in my shoulders. Lifting and stretching my arms overhead is still a little tight, but yoga is helping to undo that. I feel like I’m healing up strong. It is nice to be showering like normal again!
I am continuing to take brisk hikes and stay busy as much as I can, but there is a sober undertone to it all: the coronavirus pandemic has exploded. Santa Cruz County, along with several other Bay Area counties, were ordered to shelter in place as of Monday night. That means only we can only take essential trips out of the house, including going to the grocery store, doctor’s appointments, and going for walks. Thankfully our leaders recognize the need to leave the house for a walk. If I see someone on the trail, we are all careful to stay six feet apart and pass purposefully along after saying an obligatory Hi. Gatherings are restricted to fewer than ten people. This order will last until April 7, at the earliest, and schools are likely going to be closed until the end of the school-year.
No one alive today has lived through something quite like this. There are thirteen confirmed cases in the county as of today, and this viral tsunami hasn’t crested yet. Santa Clara County has 155 cases as of today. Understandably, hospitals are getting ready for an unprecedented, and potentially untenable, influx of patients suffering from Covid-19. I worry for all of the people who are going to suffer from this.
Today, my MUGA scan scheduled for this Friday was canceled due to the coronavirus. I have a port implant surgery scheduled for next Wednesday, March 25, but understand that could rescheduled, too. Which leaves me in a tricky place regarding my next steps of chemotherapy – when will it start? If it is delayed, how much does it matter?
It’s another lesson in patience, and its adaptive nature. It is imperative that I go with the flow right now, and not stress out if my chemo regimen is postponed, because I feel totally vulnerable at the bottom of everything. I am at the mercy of the medical industry, and their justified triage of higher-priority patients who will simply need to breathe with the help of a ventilator, granted there are enough of them. These are legitimately scary times for everyone, cancer-patients or not. Matters of life and death are on the table for our most vulnerable populations. I am relatively young and healthy; I understand, and support, prioritizing higher-risk patients over myself right now. My doctor said chemo typically starts no later than six weeks after surgery, and with my surgery date of February 26, that puts me at April 6, a little over two weeks away. Things should go on as planned, but I’m keenly aware, and it’s been communicated to me, that things could change. They’ve done a great job of contacting me when things need to be rescheduled, so I’m trusting there are caring professionals working from home to keep people’s treatments from slipping through the cracks. Hats off to our doctors, medical professionals, and support staff who will be heroes for who knows how many people in the months ahead.
As I wait for my next steps, still scheduled as of today for my port surgery next week, I am hopeful that my treatment will continue in due time, no later than April 6 as my doctor assured me. I could use a little bit more time; I am uncertain about whether or not to have radiation therapy. Even though it was prescribed as part of my treatment plan, I have the right to deny it. Why would I do this? Collateral damage – paying for that radiation later in life with another malady, another form of cancer. Radiation increases your risk of both heart and lung cancers, although they use breath-holding techniques now to limit exposure. It will also change my skin around my left chest wall, possibly leading to fibrosis, or scarring around my expanders. This would preclude me getting a proper implant at the end of treatment, and would mean trying a flap surgery on my left side; they will not have to irradiate the right side. The cosmetic result may not be as good. I’ve heard many times Life over breast, meaning one should never put the cosmetic value of a breast over health or increased longevity. However, given the other side-effects of radiation, including prolonged fatigue, perhaps my statistical increase in life-expectancy isn’t worth it.
Collateral damage is something I’m quite concerned about at thirty-nine years old; I’d like to think I have some years ahead of me to look forward to. At what cost is a slight increase in my odds of ten-year survival worth it? What price am I willing to pay if I am wrong? What if I opt not to have radiation, and I have a recurrence in a different part of my body ten years from now? Thirty years from now? Will I always look back and rue the day I decided not to follow my doctor’s urging? I am open to poisoning my body from chemotherapy, hellish as it sounds, but I am skeptical of radiation in a different way. It’s a different kind of monster, in that it can alter cells in ways only measurable after many years. I’m no expert on radiation, but I’ve been reading enough to know it is far less dosage than used twenty years ago, even ten years ago. It’s still exposure, though, and even if it’s targeted to my left chest wall, what might it do to the rest of my body? I am inclined to follow doctor’s orders most of the time, and am feeling like I will probably follow their order for radiation; I’m just not totally sure yet.
As I ponder my next steps, I am grateful for this shelter-in-place time. I’ve basically been told to keep doing what I’ve been doing over the last few weeks since surgery – solo hikes, beach, and time at home. It’s an introvert’s dream – no forced socialization, just lots of time to yourself to do what you love. I love people, of course, but I cherish time alone. There is always something interesting to dive into, something fun to do! I can keep myself entertained just fine. When I’m not out hiking or at the beach, I have a lot to do at home, lots of books to read, things to research, gardening, guitar to play, and some indulgent television to watch for good balance.
I ran for the first time last night on the beach, which felt like freedom! I didn’t run too fast or too long, but it felt incredible and got some more endorphins going than power-hiking can. It was the hardest my heart’s beat since before surgery, something I usually relied on my bike to do. I love a good cardiovascular workout; it’s good for the heart, the skin, the whole body, and just as importantly, the mind. The runner’s high is real.
This is the longest stretch of time I haven’t ridden my bike for in seven years, and I miss it like crazy. I was able to mount up for the first time today, and might try a short, flat ride on pavement tomorrow. I am cleared to do flat, smooth, low-speed riding where my risk of falling is low after three weeks; after six weeks, I can start easing back into downhill riding. I’ll have to see how my body responds, and most of all, avoid crashing!
And avoid getting sick after chemo has started. If I get the coronavirus now, while my immune system is strong, I’d probably be just fine and recover at home like most people. If I get it after I’ve started chemo, however, I could develop pneumonia, and it could be far more serious. Everything now is on a wait-and-see basis.
This cancer-patient’s patience must adapt even more. Everyone’s patience must adapt during this crisis. I’m going to keep on walking as much as I can, going outside and appreciating nature as much as I can, maintaining a safe distance from people, few as they may be in more secluded spots.
I must become more patient for the reality of chemo, of sitting in that chair for two hours, of dealing with whatever side effects will come. I must be patient with myself when I feel nothing like myself. Regardless of improvements in chemotherapy drugs, I don’t expect any of it to be easy.
I must be patient with feeling like I have such heavy dream legs, to feel like I am walking in place, not moving ahead. There’s an urgency to cancer treatment, but there’s also dynamic forces at work here beyond my control. While I expect to start chemo within the next few weeks, I accept the reality that it could be delayed.
I’ll have to keep walking ahead, dream legs at work, because I can’t just sit at home all day. Nature is my therapy, especially right now, and being outside is the happiest part of my day. It makes me forget that I am waiting to take back my health, that I am waiting to attack terrorist cancer cells in my body, left over from the original tumor. It makes me forget that I have cancer at all, even if only for a few minutes. It makes me feel like I am moving forward, I am progressing; that I am not bound by dream legs running in place toward a moving horizon.
I’ll keep on walking, dream legs or not, because it beats the alternative of sitting-in-place during this shelter-in-place.
The sky is falling, yes indeed
Pieces of water vapor collect and fall to the ground
Some as light as snowflakes, others heavy as lead
Defiant thunderheads roar with authority
Before submitting to prevailing winds
Persistently pushing in off the Pacific
Their clash of wills parting the darkening sky
Clearing a porthole of sunlight
Piercing through like a shining sword
Cutting through the storm
A bird sings unaffected, Spring’s pull so forceful
Only one thing is important now –
Life – the continuation of, extension of, preservation of, reproduction of…
Life is the essence of Spring