Category Archives: recurrent cancer

My Brain on Scan Week

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CT scan (computerized topography). The donut. The table slides you in and out a few times, you hold your breath some, get the iodine contrast through the iv, and boom, you’re done! You have no idea how comfortable I am with needles at this point…

Every 3 months I get a CT scan of my chest, abdomen, and pelvis to see if anything new has decided to take up residence in my body, or more accurately, any of the microscopic cells already present have decided to give the radiologist something to wax poetic about. Barring the fact I’ve had lung surgery, the time between this imaging passes without me worrying too much about having cancer because I am scanned every 3 months, and there’s hardly time to worry before I’m back in the donut again. However, the days around getting the scan and hearing the results tend to manifest some dramatic thoughts. People always say they can’t imagine what it must be like, so here’s a glimpse into my mind during the days surrounding my last scan. The words in quotation marks are my inner dialogue.

Sunday, February 10th, CT scan 8:30a tomorrow morning:

1:30p: at brunch, nothing really looks good, and I’m feeling a little tired and nauseated. “god, I might puke. i don’t even know if I can keep anything down. why am I so tired? there’s a massive tumor in my colon. i’m obviously dying. i can feel it growing.”

1:55p: “omg, that’s the best burger! oooooph, i ate it all. you aren’t dying, you’re old, and still a little hungover from friday night. freakin’ M.” (no need to name the mostly innocent)

9:00p: sitting on couch, rewatching last season of Game of Thrones, duh. “i hope I live to see the series finale.”

10:45p: “i don’t need to set an alarm. as if I’ll sleep past 7a on a Monday morning. god, I just want to get this over with.”

Monday, February 11th:

8:10a: eyes blink open. “oh wow, that was great sleep. yay, sunshine, how dreamy. wait. what time is it? oh my god! oh my god oh my god oh my god!” Teeth brushed, hair not so much.

8:30a: made it on time to my imaging center, “like a boss!” Receptionist: You have an outstanding balance of $300. How would you like to take care of that? “[Curse curse curse]” Charge it! I tell her with a smile. “[Curse]. well, at least I’ll get points.”

8:32a: filling out same paperwork as always, listing medical history, and here comes the baby panic attack. “it’s back. it’s definitely back, and probably all over my colon. Fuuu…what if it’s my liver? is that a chest pain? just be ready for it to be there. [Curse] try to look calm. this isn’t your first time.” Take a diazepam, and try not to walk out the door.

8:33a: “if I have cancer again there’s no way I’m doing chemo. no way. i’m going out big, a world beach tour. how quickly could I sell my car, or could I just get an advance on the money from mom and dad? probably not an issue, could just charge it. Seychelles, Mauritius, the Maldives, back to Trancoso, a full week in Espelho. home to die. boom. why am I so tired? definitely dying.” Note: The above statement about the chemo is most assuredly untrue.

8:35a: “stop being a crazy person. you do not have cancer again. you have allergies like everyone else in Austin. seriously every other person you talk to has the same complaints.”

8:36a: Imaging tech: Ms. Walters? Blah blah blah, metal hooks, blah blah blah blah, iv for contrast, which arm, blah blah.

8:43a: CT scan says: Breathe in and hold your breath. Breathe. Breathe in and hold your breath. Breathe. Tech: Here comes the iodine (it warms you up like a hot flash, and totally makes you feel like you just pee’d on yourself, but you probably did not). “i wonder if she can see the spots, and is being super nice because my lungs are covered in tumors? i wish I could power nap. why don’t they have candy here?”

8:45a: Ok, Ms. Walters, you’ll just need to stay here for 12 minutes to make sure you haven’t had a reaction to the iodine. “i’ve never had one in the past, so why do you think I’ll have one now? I just want my coffee.” Ok, thanks, is what I say.

8:47a: “please no more chemo, please no more chemo, please no more chemo.”

8:48a: “Coffee.”

8:49a: “please no more chemo, please no more chemo, please no more chemo.”

8:50a: You can go, drink plenty of blah blah blah. “Coffee”

All day rest of the day: distraction. Take a walk, lunch with a friend, workout with a friend, go to the grocery store, dinner with friend, home and asleep by 10p.

Sample convo and inner workings of my brain any time over the next 3 days: friend: did you have your scan? It will all be good, you’re so healthy! me: I feel really good! My brain: “just enjoy this time together, because it all changes once we find out you’re riddled with cancer. no! stop being ridiculous. you’re fine.” Back and forth back and forth.

Tuesday, February 12th and Wednesday, February 13th:

At any point during the day:

“i’m strong. i could do another surgery tomorrow, and hold off on the chemo until we see if another one is there in 3 more months.” Deep, deep, deep down thought, “but what if this is when they find lots of them.” Squash! Bye, bye deep down thought.

Or

“things are too good for me to have to do this again. one at a time, easy enough to manage. i’m not the other kind of Stage IV.” This is an interesting one, isn’t it. “I’m not the other kind,” meaning the one who isn’t NED after a surgery, but is living day to day with their cancer, looking at prolonging and not curing. Funny the way we make these distinctions, but we do, because mine could still be gone and never come back. You never know.

Mostly

“busy busy busy busy busy busy. I’m too busy to think. busy busy busy busy busy busy.”

Thursday, February 14th, follow-up visit with Dr. Yorio at 3p:

6:30a: “how long til 3pm?”

6:35a: enter state of extreme emotional and psychological suppression. “i’m fine.”

6:35a to 2:30p: “i’m fine.”

2:45p: “i’m not fine. i’m fine.”

3:00p: meet mom in lobby. her: how are you? me: I’m fine. “gotta move. i need candy.”

3:03p: teaching older gentleman how to dig for the best candy at the bottom of the basket. I tell him he should take as many as he wants because no matter what he’s doing here today, we would both rather be somewhere else. I find two caramels hiding in a bottom corner for him, and take 6 tootsie rolls for myself. sit down next to mom, eat all 6 in rapid succession, head back for more. give 4 vials of blood. come back. Panic is rising.

3:15p: waiting for Dr. Yorio. mom is making small talk. i have no idea what i’m saying in response. “where the f*^k is he? how long does it take to spin some blood?”

3:25p: “Ok. I’m ok. he never makes me wait when it’s bad. I’ve gotta pee…do I have time to sneak out?”

3:35p: “OMG, just get in here, tell me I’m fine, and let me goooooooooooooooooooooo. MoPac is backing up like a parking lot as we speak.”

Seriously, this is how I knew it was ok. He never, ever makes me wait when he’s delivering bad news. The man is in the door within seconds of me sitting down when he’s about to say the word cancer again. The scan was clear, not a single new speck. Time for celebration, right? For the people who love me, absolutely.

3:45p: “This is good. The further we push it, the stronger you’ll get. Thank god it wasn’t today.” deep down thought “but it will likely be next time.”

That’s my thought. “This is good.” I do not jump up and down with excitement, and I certainly no longer believe that this means everything will be alright. It means everything was alright today. And it means I don’t have to cancel my Gyrotonic training in March. I am also making plans for my beau’s 50th birthday trip this summer, where all of our reservations are refundable.

 

 

 

 

I’m Starting a Movement!

You get in life what you have the courage to ask for. — Oprah Winfrey

I’m starting a movement! I haven’t ever started a movement, and don’t specifically know what it means to do so, but I’m going to do it anyway. This movement doesn’t have a name yet, and I’ve only gotten so far in planning as to determine that my mission is to circulate it’s core principles to as wide an audience as the oncology community can possibly reach. The idea is simple in theory, and perhaps a little more complicated in execution, but does that mean we can’t do it? Absolutely not. Will it take a substantial grassroots effort, and quite a bit of initial funding? Without a doubt. Will the long and short term benefits have a clinically significant effect on patients outcomes? Research says yes! In short, the central premise of my movement is cancer patients need access to safe, regular exercise, sometimes one on one with a trainer, as long as they have been cleared by their oncologists to do so.

Many patients like myself will be able to exercise independently, but for those who need more supervision, or are new to physical activity, it should be provided as part of cancer treatment protocols. The American Society of Clinical Oncology (ASCO) held their annual conference a couple of weeks ago, and my Twitter feed exploded with tweets about cancer and exercise, just like last year. This gathering is a big deal in the cancer world, and all of the major players go to present their findings, talk about hot topics in oncology, and get projections for where cancer care is headed. For the last few years the number of presentations and posters regarding exercise oncology have been a source of pride for physical therapists and exercise physiologists, exhilarated by the fact their research is making an impact, and also gathering steam in the form of how to make prescriptive exercise happen. American clinicians leave ASCO filled with inspiration and buoyed by success, but powerless to actually proceed because of the roadblock that guts so many beneficial medical treatments, who will pay, while their counterparts from places like Australia and New Zealand take a very long flight home to determine how to integrate solid new research into practice.

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Dr. Prue Cormie, Associate Professor at Australian Catholic University, Principal Research Fellow, and accredited exercise physiologist leads the Exercise Oncology Team within the Mary MacKillop Institute for Health Research. She’s pretty much my hero. Please watch her mind altering TED Talk: A new contender in the fight against cancer

This is why I’m starting my movement, because other countries are successfully using exercise as a component of cancer care, and we should, too. Let me tell you my dream, and if you have any questions about why exercise should be an essential component of most cancer treatment protocols, I encourage you to read back through my old blog post, because I’ve written about this a lot. In my utopian world of  U.S. healthcare, when a patient was diagnosed with cancer part of their standard work-up would be a referral to PT or an exercise physiologist, just like going for blood work, scans, or any of the thousand other things you have to do at diagnosis. The clinician would talk to the patient about exercise and specific benefits during cancer treatment and beyond, find out what the patient is doing for exercise and determine how committed they are to their routine, assess for any preexisting debility, then if the patient is willing and shows need, enroll them in a prescriptive exercise program. Prescriptive exercise is exactly what it sounds like, physical activity that is meant to have therapeutic outcomes based on clinical exercise parameters (heart rate, blood pressure, respiratory rate), and designed by an exercise professional specifically for the individual. Patients who have not had a regular exercise routine in the past would learn how to workout safely and effectively while being monitored for oncological emergencies, or patients who have been physically active in the past but were now considered medically “fragile”, would be able to receive the medical benefits of exercise under the supervision of a clinical specialist. For patients who need a little less assistance, group classes would be made available. Exercise facilities would be adjacent to cancer centers, and/or infusion clinics, and would fall under the umbrella of the medical campus. I can’t imagine a better way to convey the idea to patients and their caregivers that exercise is medicine.

Imagine these patients exercising 2-3 times per week throughout the course of their treatment. Start to finish, say you had the opportunity to work with each person anywhere from 6-12 months on average, teaching people how to exercise for health, helping them to build lifelong movement habits (because exercise is a habit), educating them on movement systems that resonate with them, and on top of it all, improving their treatment outcomes and decreasing risk of recurrence. The social support mechanism of programs like this have the potential to provide incredible psychosocial benefits in addition to the physical ones, allowing patients the opportunity to interact with others undergoing a shared life event. They would find themselves surrounded by other cancer patients, enjoying the opportunity to cheer each other on, talk with others about their experience, and find a community of people facing a similarly sucky circumstance. In addition, this is treatment that is therapeutic for almost all types of cancer as opposed to just one group, so it can be applied to hundreds of thousands of patients. Some will, crudely in my opinion, ask why we can’t send these patients to Gold’s gym, because exercise is exercise, right? Of course it isn’t. 40+ years of research in cancer patients shows that exercise at certain percentages of heart rate max, VO2 peak, etc., provide the most therapeutic benefit, so the assessments and interventions need to be monitored. As well, while they are in active treatment the cancer population needs trained professionals to closely observe for oncological emergencies due to the toxic nature of every single thing happening to them.

Speaking from personal experience, exercise has provided me with the greatest value in terms of my ability to live well, tolerate additional surgeries, and recover, but we all know I have a unique skill set that provides me with the tools to exercise safely and independently, even when I’m in the trenches. From my conversations with other cancer patients I’ve learned many lack the confidence to exercise during treatment (when cleared by their onco), or weren’t aware it was actually safe to do so (also when cleared by their onco). And we all know cancer is incredibly expensive, so hiring an oncology certified trainer at this point isn’t manageable for most, but the medical benefits to healthcare savings and physical health, for both the patient and healthcare system, would warrant the costs. Please note, however, sometimes the cancer takes over, and there’s not a damn thing to be done, so this is in no way to insinuate that those who didn’t exercise would have lived if they had. That’s ridiculous, and while we’re at it, green juice probably won’t save your life either. Look at me, I exercise a lot and have had two recurrences, so I’m not talking a cure, I’m talking something to help you endure. And sometimes to help deliver the drugs more effectively, decrease inflammation, decrease peripheral neuropathy, decrease chemo-related fatigue, decrease risk of recurrence (I said sometimes), and diminish the effects of “chemobrain” (I said sometimes!).

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Pilates 10 months after my first lung surgery. Check it out! Exercise is fun!

Join my movement! Ask your doctors over and over what they will do to help provide you with physical activity. Ask your medical social worker what programs are available in your area for cancer patients. Ask so many times that it becomes important to the business office, and then maybe one day, it will become important to your insurance provider, and we will all be better off.

Moving Past Survival

sur·vi·vor
/sərˈvīvər/
noun
a person who survives, especially a person remaining alive after an event in which others have died.
“the sole survivor of the massacre”
the remainder of a group of people or things.
“a survivor from last year’s team”
a person who copes well with difficulties in their life.
“she is a born survivor”

Since adulthood, I haven’t put much faith in new year’s resolutions. Observing the quick and careless failure of multiple sincere intentions in my early 20’s led me to believe that these aspirations were foolish endeavors that would only make me feel like a loser later on. Sometimes since, though, a seed will be planted in December with such tenacious roots that it takes on the appearance of a resolution, and in these cases I feel it’s my duty to attempt to follow this road map for the coming year (much like NYE 2015, when I decided to make the coming year all about my health, ie, the year I was diagnosed with cancer, and the year I realized that I needed to be much more specific with my intention setting in these moments of inspiration). The follow-up appointment with my oncologist after my last lung surgery set one of these seemingly inexorable projects underway, making 2019 the year I decided to move past survival to focus on what I feel is a more important question: how do I want to live?

It started with Dr. Yorio telling me, “we’re going to begin treating this as a chronic disease process,” and set sail in the turbulent waters of my mind with his answer to a question I had about immunotherapy, “we just have to keep you in the game long enough for them to develop one for you.” Keep me in the game?!? While these sentences sound ominous, literally nothing has changed aside from the assumption that my first lung metastasis was a one-off, because while he hopes there won’t be more recurrences, he now suspects there probably will be. As far as treatment and routine go, there will continue to be, perhaps until the end of time, CT scans every 3 months, with the recommendation that if these lesions only pop up at 18 month intervals we cut them out, and if they start coming faster, administer some more chemo or nice antibodies. The “keep you in the game” comment referred to the idea that they are developing immunotherapies for different cancers everyday, and eventually there will be one for me. At the end of this office visit, he reminded me that each cancer is a snowflake, and it’s not always easy to predict how they will behave, so we might never see another tumor, but we likely will. It makes my eyes want to cross a little bit. You’re most likely fine, unless you’re not. And this is where I had to remind myself that he’s a doctor, not a fortune teller. Will it come back? Not a fortune teller. Will I live another 40 years? Not a fortune teller. Will it spread throughout my lungs, fill my liver, and infest my brain? Not a fortune teller.

Regardless, our conversation gave me pause, and his words reverberated in my head over the Christmas holiday, or to put it more accurately, I brooded over this for about a week before getting it straight in my mind. In many ways over the last 3+ years, I was too tired to be almost anything but reactive, mostly working to keep my head above water professionally, physically, and emotionally. I had so many life hand grenades coming my way, that I was deep in the land of bob and weave, duck and cover, keep your head down and don’t look the universe in the eye; I was getting by, which is a colorless way to live. I was surviving. That’s what we call cancer patients, though, survivors, as if survival is the end goal. Up until early last summer, life felt like walking into a spring wind in eastern New Mexico (consider this the panhandle’s equivalent to Sisyphus and his stupid rock), and it was exhausting. I was waiting for my real life to begin again, setting goals based on 2 years of clean scans, or my 5 year clear plan (which is when they consider you officially good to go). I was on autopilot because I was fried by the act of living, a feeling I don’t believe is unique to the cancer community.

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Taos, NM, New Year’s Eve 2018. It blew apart some of the detritus in my soul. Ha ha. Seriously.

This brings us up to NYE in Taos, where I am having one of my best days ever with fluffy snowflakes falling endlessly over more than 24 hours in the cleanest mountain air, realizing that survival isn’t enough. Surviving has gotten me this far, and I’m grateful for it, but I’m ready to begin living intentionally again, hence the idea of how I want to live. I think it’s more hopeful than surviving, and definitely more fun than hanging on to life by the fingernails. It’s very different than the question of what do I want to do for a living, where do I want to live, or who do I want to live with; it’s an idea that centers around the root of what I want my life to look like. Acting as though, novel concept coming up here, I’m actually involved in living life as opposed to being swept up by its currents. How do I want to feel about my relationships with people? My work? My environment? This is a basic question, or it should be, and I don’t know if I had ever actually addressed it in the past.

It’s a great concept to have swirling around in the back of my head, because it often defuses that first knee jerk reaction to a situation that might send me into a momentary tizzy, or more accurately internal explosion, allowing for the split second pause that often manifest as a calmer response. Someone cuts me off in traffic, instead of flipping them off and screaming out my window, I take a breath, call them a jerk and let it go. Why? Because I don’t want to live in a constant state of vexation. Over the last couple of years, my personal Pilates and cardio practices became almost solely rehabilitation and maintenance in preparation for another cancer event, and the desire to continue learning became lost in their functionality. That’s not how I want to live in my career, and it doesn’t offer enough to my clients. It was easy to assess that if I gave a mere 50% more effort towards reengaging as a student, how much richer my career can be. Or even yesterday, which was Sunday, when the question of how I want to live was answered by one word: lazily. Chores, errands, productivity be damned, I wanted to do nothing, and did it well. Survivor me would have probably done the same thing, but would have gone on to feel guilty about the amount of time she spent doing “nothing,” because she was surviving, and you have to fight hard to survive. As for people? I am actually putting real effort into responding instead of reacting, and while I’m not perfect at it, there’s been a sharp decrease in time spent frustrated with other people, or myself.

It’s empowering to know I can survive life’s deluge when it comes my way, but it’s not the way I want to live. Cancer treatment is making mind blowing strides with many patients living many years with the side effects of treatment, and often recurrent cancers, so maybe moving past survivorship should be a goal of not just the patient, but the medical community as well.

 

 

 

 

 

 

Again?!?

The last post I published was in September of 2017, three and a half months after my first cancer recurrence. If I’m publishing again, while it could mean many things, it probably only means one. Now, before anyone takes this too seriously, as of Monday morning, November 26th, I was out of surgery for a fast growing tumor to the upper lobe of my right lung, and am once again NED (cancer talk for “no evidence of disease”). At this point I’m feeling qualified to say that every time I’m diagnosed with cancer, it’s a different experience. The first time, I charged in with the beautiful, naive optimism of Joan of Arc, certain that fearlessness and fortitude were all I needed to knock cancer soundly on its ass. The second time, soul weary and not quite recovered from round one, I muddled through in a haze of depression and defeat. This time, the third, has shown itself to be something altogether new, because now I’m starting to develop cancer wisdom, or as I’ve taken to saying, I’m a frequent flyer in a super sucky miles program with questionable rewards.

Since January of 2017, I’ve gotten a CT scan every 3 months. In the beginning, it was to follow the sketchy speck that became my first cancer recurrence, and afterward, to err on the side of caution. From July of 2017 to November of 2018, I had 6 clean scans. Nothing to see here, not a single change, not a twinkle in my tumors eye. Life was good, and I was going like gang busters. My schedule in the studio picked up to relatively full time, the prescriptive exercise pilot I presented to the LIVESTRONG Cancer Institutes at Dell Med School was moving forward, and I was strong, happy, and in love. I got comfortable, so comfortable in fact, that when my oncologists office was running painfully behind the day I was to get my most recent scan results, I abandoned their waiting room to go to the studio, and told them to leave a voicemail if I didn’t answer. Their voicemail went something like this, “we would still like to offer you the chance to come in to get your results in person, anytime you are available. You can call ahead or walk in.” A voicemail like this from any doctors office is the equivalent to being moved into the private room with a view following your colonoscopy, bad news is on its way.

I got their voicemail about 4 hours after leaving the office, and like any sane person, I drove straight to Neiman Marcus to get my gown for a close friends wedding the following weekend in Mexico City. What did you think I was going to say? That I went screeching into Texas Oncology? It is very important in life that one knows how to prioritize, and if you’re going to get crap news like having cancer again, then knowing there’s a brilliant dress hanging in your car really does soften the blow. After I picked up my dress I drove down the road to my oncologist office. And then sat in the parking lot deciding whether or not to go in. You can’t hide from the truth forever, but it never hurts to try for a minute.

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This is the back of said gorgeous dress. The front will come in the next post when I describe how I learned what it’s like to deal with this disease in a somewhat new relationship. I’m sure my boyfriend will be super psyched about that. (just imagine the hanging strap peaking out from the back tucked all the way in).

So there I was, by myself/alone/flying solo in the waiting room for the first time in nearly 3 1/2 years (someone who loves me had always insisted on coming with), and for the first time ever in that waiting room, I wept. Having never cried before when I got the news, this felt like a somewhat delirious luxury, to let emotion spill out and be a little angry that my cancer won’t just go away and leave me the fuck alone. I didn’t cry because I was afraid of what was coming (I’m not scared of much anymore besides snakes), but because of what I knew would be coming: pain, fatigue, recovery, rehabilitation, more scar tissue, and one more, hopefully mild, bout of depression. I was crying because I was getting prepared, and I was crying because my life is about staying prepared. I was crying because having cancer sucks.

A perk in oncology is the speed with which they give you news. I think I waited all of 5 minutes before being ushered back to Dr. Yorio’s office (which means my cry in the waiting room probably lasted about 3 1/2, no need to drag these things out), and then maybe waited 2 minutes for his soft tap on the door. In the last 3 months, with no warning, a small lesion had flourished in my lung, growing to the small size it had taken its predecessor almost a year to reach. Previously, my cancer had been described as indolent, meaning it was slow growing, a bit lazy. There was comfort in this, probably because it gave me the illusion of time. That buffer was nonexistent when my oncologist told me there was a 1 cm lesion in the upper lobe of my right lung, and we needed to schedule surgery. 0 to “here we go again” in 30 seconds. The speed with which the new cell had grown threw me, and continues to throw me, for a real loop. It was new, and I’m learning that when it comes to my cancer, I don’t like new.

This was 3:45 pm on the Monday of one of my most anticipated weekends in years. On Thursday of the same week, many of my best friends in the world and I and my beau (heart hands), were leaving for the wedding in CDMX, and returning late the following Monday, which just happened to be the week of Thanksgiving. Fast growing lesion, time to celebrate, Thanksgiving holiday. What do you do? Go numb, act quickly. I had an appointment with my thoracic surgeon less than 48 hours later, and a wedge resection scheduled for the Monday following Thanksgiving. He assured me that this lesion was better located for removal, they had better eyes on it, and this should be an easier surgery to recover from. Walk in the park? No. Because even with easier lung surgery, lung surgery is lung surgery, but less bad is always good.

Here’s what I knew, I was much stronger than I had been when I had lung surgery in 2017, in a far better place mentally and emotionally, and reasonably knew what to expect. I was as prepared as you can be when you’re unprepared. What didn’t I know? How to share this news with my relatively new suitor who is also an old friend, or how this diagnosis triggers me in a way that I can’t hide so well from the person sleeping next to me. This was as new as my fast growing lesion, and I’m not entirely sure I was very good at it.

 

*Welcome back, friends! I’m going to try an experiment in keeping this blog updated in 2019, some posts I will share to social media, and others will just go up, so if you have any interest, check in on occasion.

 

 

Yes, You Should Move During Chemo

I’ve thought a lot about where the motivation to be physically active throughout cancer treatment comes from. At some point, and maybe multiple points, you are going to feel like absolute garbage. If you’ve had radiation, you might have burns, if you’ve had surgery, you will have incisions and bruised insides, and if you’re undergoing chemo, there are a whole hosts of side effects that could potentially arise, none of them desirous. If you’re doing any combination of the above, along with a number of treatments I have absolutely no experience with, well then, as we say in Texas, bless your sweet heart. So how, and even more importantly, why, in the midst of all this, will you find yourself motivated to move? Because movement is medicine.

Hopefully, you’ve already been practicing pre-hab, i.e., pre-rehabilitation meant to strengthen the body and improve endurance in preparation for a surgery, illness, or medical procedure that will likely require re-hab. You’re already in the habit of moving in a way you enjoy, and it makes both your brain and body feel good. But, the big but, you’ve hit the point where you don’t feel well in ways that you didn’t know you could feel bad, and you don’t want to do anything, let alone exercise! Do it anyways. Are you feeling muddled from chemo? Have you already forgotten two appointments today, and can’t remember why you’re standing in the middle of your bedroom holding a pair of shoes and socks? Chemo brain is real. Research says so. Best treatment? Physical activity, as if you didn’t already know the answer. A recent study published online on July 4, 2017 (“The effects of physical activity and fatigue on cognitive performance in breast cancer survivors.”) involving 300 breast cancer patients during active treatment, revealed that the participants who engaged in more physical activity each day than their counterparts demonstrated better performance on cognitive tasks measuring attention, memory, and multi-tasking. They also reported less fatigue. Depression and anxiety are among the most taxing side effects of cancer and its treatments, and a 2012 study directed by Dr. Karen Mustian, showed that 10-45 minutes of aerobic exercise 4-6 days per week was enough to significantly reduce not only anxiety and depression, but sleep disruption, too, which is also a common side effect of cancer treatment. As well, a more recent study by Dr. Mustian showed that a walking program and gentle resistance-band training at home reduced the chronic inflammation that’s common in cancer patients receiving chemotherapy. Starting to feel the effects of neuropathy? Maybe your extremities are always tingling, asleep, burning, aching, numb, or clumsy? Studies show that exercise is one of the best ways to reduce the effects of peripheral neuropathy. And, as I’ve mentioned before, most importantly of all, research also indicates that physical activity during and after infusion helps to deliver chemo drugs to the tumors when they are most readily available in your body by increasing vascular normalization. Huh? The researchers say it best, “Tumor vessels are highly disorganized with disrupted blood flow impeding drug delivery to cancer cells… We show that moderate aerobic exercise with chemotherapy caused a significantly greater decrease in tumor growth than chemotherapy alone through improved chemotherapy delivery after tumor vascular normalization.” (Tumor vessel normalization after aerobic exercise enhances chemotherapeutic efficacy). Could “greater decrease in tumor growth” possibly be so simple as taking a few short walks a week? Yes, apparently it is.

Importantly, each side effect that you are effectively able to improve increases your chances of completing your entire treatment protocol, thereby improving your overall response to treatment AND your cancer experience. Trying to have a decent cancer experience should be a thing, and movement is a huge part of that thing. Physical activity is kind of like that wonder drug that we always want, the one pill that will address multiple issues at once without creating more unwanted reactions. There are pills for neuropathy, sleep, depression, and fatigue, but I can promise you they don’t work as well as exercise. It is low cost, self-driven, simple, and one less foreign substance moving through your body. And the absolutely, positively, most fantastical finding about physical activity in cancer patients, is that it doesn’t have to be hard or vigorous to be effective! This is not an ass-kicking, no pain no gain, harder/faster/tougher mentality. At all. Consistent and moderate are the words you see over and over. This is an act of kindness for your mind and body, so treat it as such. The majority of this research has been done utilizing moderate aerobic activity, like walking, and gentle resistance band exercises, and most often given as a home exercise program to patients. The key to unlocking the treasure trove of benefits as you go through treatment is simply to stay physically active.

If you are unsure of where to begin, always discuss starting a program with your oncologist(s), and if you’ve started feeling generally funky and don’t know how to safely continue, once again, speak with your doctor, and maybe schedule a few visits with a cancer rehabilitation PT, or an exercise physiologist who has expertise in working with cancer patients. There are so many resources available! Here are a few ideas to get you started:

  • In the infusion clinic, at least once an hour, get up and take a couple of laps. If you feel unsteady have a friend join you, or grab a volunteer, but help your body move all those drugs through your system! Personally, I found that this helped my nausea a bit, but that might not hold true for everyone
  • Purchase a pedometer. I’ve found multiple online for less than $10. Whether you set a goal of 10,000 steps a day, or 5,000, research indicates that most cancer patients are walking far less each day than they were prior to diagnosis, so check your steps!
  • Theraband is also relatively inexpensive and can be purchased online. Buy a couple of resistance bands, and take them to the infusion clinic with you, or keep them at home. Sign up on the Thera-band Academy website for a gazillion exercises that may be done in sitting with a resistance band. This is a great way to maintain strength and flexibility.
  • Do it yourself. Put laundry in the washing machine, go to the grocery store, plant gardenias, dust your furniture. These count as physical activity, and you’ll watch yourself racking up the steps!
  • Rest as necessary, none of this is meant to wear you down further.
  • Don’t rest all the time.
  • Remember that movement is medicine.

 

 

A Case for Exercise Throughout Cancer

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November 2015. In the studio 1 day after chemo, and looking a little nauseated. In fact, I’m quite sure I was nauseated, but moving around always lessened it a bit.

It will come as a shock to no one that I’m a huge believer that movement heals, and should be considered an integral part of almost all cancer treatment programs with rare exception. The human body is a dynamic machine whose mechanisms thrive on the power derived from the processes initiated by physical activity. Last year, the following headline validated much of what I have preached throughout my cancer experience: Exercise is the Best Cure for Fatigue Caused by Cancer. I believe my exact response was an eloquent “duh,” and from there I dove down the rabbit hole of investigating the importance of exercise before, during, and after cancer treatment. What a thrill it was to find myriad scientific articles and studies proclaiming that not only was exercise a good thing for cancer patients, but that oncology rehabilitation “must” be a component of survivorship programs.

I learned that in places like New Zealand and Australia, depending on the chemo drug administered, they will escort patients directly from the infusion clinic to physical therapy because there is evidence to show that exercise may increase blood flow to tumors at the time when the drugs are most readily available in your body. That there is irrefutable evidence that exercising during treatment reduces the severity of side effects with certain types of cancer, increases the likelihood that the full treatment regimen will be completed, and increases life expectancy by up to 28-44% after particular cancer diagnoses. On multiple occasions, I have been nonchalantly informed that because of the 29 rounds of radiation to my pelvis during the summer of 2015 and subsequent chemotherapy, I have an almost 100% chance of suffering a spontaneous hip fracture by the time I’m 75. This sounds horrifically painful. Apparently, chemotherapy may cause a woman to lose as much bone density in one year as she would in a decade. What is the best way to maintain or improve bone density? Weight bearing exercises. Many patients suffer from peripheral neuropathy, an uncomfortable and potentially dangerous side effect of chemotherapy, in their hands and feet. The condition may cause tingling or burning in the extremities, making sleep elusive, and/or loss of sensation leading to falls and fall-related injuries. One of the best ways to treat peripheral neuropathy, especially early on, are exercises that increase blood flow to the peripheral nerves to improve sensation, and activities that improve strength and mobility to decrease fall risk. Infinitely more simple than the drugs often prescribed with side effects like drowsiness and dizziness. Cancer patients don’t really need anymore of that.

To boot, exercise may also lessen nausea (woohoo!), decrease feelings of anxiety and depression, improve your ability to maintain a social life, decrease fatigue, and improve your ability to take care of your own needs. While it is always lovely and heart warming to have friends and family care for us, it’s important to your spirit and sanity to maintain a sense of independence, even if it’s just doing your own laundry and grocery shopping. Exercise is proactive, and inspires a sense of self care and personal empowerment that helped me to feel in control in a situation that often makes you feel vulnerable and helpless. And please keep in mind, that while I have written the word “exercise” roughly 1,001 times in this post, that could mean a languid walk around the block, or perhaps even the infusion clinic. It’s all relative, but as you can see, the clinical evidence for oncology rehab is screaming at us, and it’s screaming at us to move.

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January 7, 2016. I was wearing my chemo pump this day. I can see that blurry, dulled look in my eyes, but it was a beautiful winter afternoon, and those should always be given the appreciation they deserve.

To most people all this jumping up and down (haha) about movement seems like a no-brainer. Of course it makes sense, but for many, many years of cancer treatment, patients were told not to tax themselves, and everyone knows the treatments make you profoundly exhausted. Exercise becomes counterintuitive, but the less you move the less you want to move. I really, really love Sir Isaac Newton’s first law of motion:

Every object will remain at rest or in uniform motion in a straight line unless compelled to change its state by the action of an external force.

Or, bodies at rest stay at rest, bodies in motion stay in motion. If you’ve been at rest too long, you must exert a little external force to get moving again. It’s science. As well, in the midst of the insanity following a cancer diagnosis, exercise often takes a back seat to all of your appointments, treatments, and general life management. Hear me when I say that in many cases exercise is NOT a luxury, it’s treatment. Refer to clinical evidence above.

It is important to consult with your doctor before beginning any exercise program, and this is even more true for cancer patients. Certain types of bone cancers increase risk of fractures, some chemo’s are known to lower blood pressure for a few days following infusion, some people develop peripheral neuropathy that may increase risk of falls or injury, and some people might have compromised immune systems that preclude time in the gym. For these and numerous other reasons, you want to speak with your doctor and make sure you’re safe, but once that’s done, there are many advantages to implementing a program, keeping in mind that for the cancer patient the intensity and/or types of activities may change daily based on their ever changing cancer body.

In the following weeks we will look at how to get started, different types of exercise that might benefit you or your friend with cancer, and some general guidelines on movement.

As always, thank you for reading!

Being the Mess

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A sample of the things that made having someone dig around in my lung not quite so bad.

“Sometimes, I’m the mess. Sometimes, I’m the broom. On the hardest days, I have to be both.”–Rudy Francisco

The cancer metastasized. One little nodule that popped up on the peripheral edge of the lower lobe of my left lung in October, and was growing by late April. The risk of metastasis was always there. The correlation between how low your rectal tumor is and spread to the lungs is significant, and the late stage diagnosis meant that quite probably more than one microscopic cell had caught a ride on the lymphatic highway leading to my liver and/or lungs. Despite knowing all this, it never crossed my mind that the adjuvant chemotherapy they did following surgery hadn’t annihilated each of those tiny invaders. It had most certainly come close to annihilating me. They aren’t really invaders, though, are they? Isn’t it just the same process that makes us grow in the womb? Cells dividing multiple times over, except for these are altered, and they are the enemy.

Initially, because of the positioning of the nodule above my diaphragm, my doctors didn’t know if the lesion was cancerous or not, but it was growing, they had confidence that they could locate and resect it, and eventually consensus was that it needed to come out. I imagined them apologizing profusely for cutting me open only to find a benign spot of pollen on my lung, and pushed the thoughts of malignancy so far down that for a couple of weeks I thought I might go crazy with the effort it took to conceal this possibility from myself. Always pragmatic to the outside observer, I told those who were bold enough to ask that I was prepared for it to be malignant, because that’s what strong, courageous people say, when in truth I was telling myself completely the opposite. You see, I’m actually a bit fragile, and I wasn’t mentally prepared for this, but losing one’s mind isn’t an option for the middle class.

Hearing the lesion was metastatic threw me into a dark tailspin, the greatest fear being that this is the beginning of them cutting pieces out of me bit by bit until there’s no more left, because doesn’t every tragic cancer story begin with mets to the lungs? And the greatest frustration being that this was one more setback to overcome. I was mad and sulky and apocalyptic about my life. This was supposed to be over. I had done my time and been paroled only to be thrown into the clink again. Except cancer is more like the super-max New Mexico state penitentiary in Santa Fe than anything that could ever be called the “clink.” It has a dark, heavy current of pain, grief, and fear that I had purposefully chosen not to explore my first time around. I was a goddess! I was going to rise above! Whether I was chronically nauseated, cut from pubic bone to sternum, or stumbling around because I couldn’t feel my feet, I grabbed onto any sliver of light I could find and created a blinding sun. It worked at the time, but apparently the universe felt that I hadn’t fully examined the shadows of my emotional depth, and decided to invoke it’s no stone left unturned clause. Tyrant.

Last week the word “submit” kept coming up: in an article written by a young woman who recently died of Ewing’s Sarcoma, by a dear friend at her book signing (“White Fur” by Jardine Libaire is this summer’s must read), by the Dalai Lama in an audiobook. I know how to take a hint. I’m practicing submission to this new rhythm of my life, anger and annoyance included. There will be scans every three months for a long time, if they cut me open I will heal, we will watch and wait, and in the meantime I will keep myself as healthy as possible because that is probably what has gotten me this far in the first place. Somedays I will be the mess, and I’m alright with that because I’ve been the broom for a long time. I continue to believe that this will potentially be the last cell to activate, but I won’t delude myself with the possibility that it won’t. Those tiny little microscopic cells are lying cozy and dormant in my spongy lung tissue, we are traveling companions, and I can accept this, but they don’t get to take over. I love what Elizabeth Gilbert once wrote about fear:

I recognize and respect that you are part of this family, and so I will never exclude you from our activities, but still—your suggestions will never be followed. You’re allowed to have a seat, and you’re allowed to have a voice, but you are not allowed to have a vote. You’re not allowed to touch the road maps; you’re not allowed to suggest detours; you’re not allowed to fiddle with the temperature. Dude, you’re not even allowed to touch the radio. But above all else, my dear old familiar friend, you are absolutely forbidden to drive.

Currently, I’m getting focused on exercise oncology. My brilliant lung capacity made this surgery possible, the fact that I rehabilitated myself past pre-cancer strength allows me to recover not only quickly, but well, and I’m reading some fascinating articles about how exercising during certain types of chemo is actually recommended to help the drugs do their job. I have developed a very specific skill set (when life gives you lemons) revolving around surgical recovery, exercising through fatigue, and how to do Pilates with a chemo pump. I’ll be writing more about all of these things, and probably more about how I’m learning to submit. Rome certainly wasn’t built in a day.

Xo, Shelby