Category Archives: living with cancer

Things That Happen To Us

Hey, everyone! Hiiii!!!! Omg, hi. I hope you’re all doing alright, and settling into a manageable rhythm in this strange new world. Life is weird in it’s present state. Really, really weird, and of course it has me thinking about when things in life happen to us. Things that happen to us are different than other things that happen. Things that happen to us are usually jarring, and often unexpected. Things that happen to us are a little scary, and tend to leave us feeling untethered. This is not a good feeling. To this day, cancer is still something that happened to me. I never saw it coming. Not once. I have been completely shocked every time, even when I told people I was ready for it, and now here we all are, in the middle of something that is happening to us.

The thing about things that happen to you, is that there is usually a feeling of complete loss of control. The coronavirus is grabbing for the wheel, and it might feel like you are being steered off the road, or that suddenly you can’t find your way to the most familiar places. To top it all off, you might have been feeling like you were on a highway that was taking you exactly where you want to go. Freakin’ detours. You did nothing to deserve this, there was no bad decision making that got you here, this is not your mess, but it has made itself your mess, and now you have to deal with it. Dealing with it sucks. However, on the bright side, you are dealing with it! Seriously, if you’re still breathing, you’re dealing with it, and I would also imagine that the majority of you are incorporating your old routine into your new routine, and are carving out new spaces for yourself in your old, familiar spaces. You are surviving a global pandemic. Welcome to survivorship! Survivorship is where you go when things happen to you. You, too, are a born survivor, and survivorship is where you learn that right here inside yourself exists all the skills you need to get off the island.

Survivorship is uneasy because it involves a lot of unknowns: will I survive, can I make fire by rubbing two sticks together, can I live in 1200 sq. feet with my significant other day in and day out? All good questions, but the nice thing about unknowns is that there’s gold in them there hills (read in my best prospector’s voice). There is growth in discomfort. I can say this after spending a lot of time surviving over the last number of years. After all this time, what I know about things that really shake up my life and sense of security, is that there is something for me here. Whether I want to or not, I’m about to learn something new about myself, so that means that I’m also going to be doing some things that ground me, make me happy, and help my brain to chill out for a minute. Things that feel good. Tapping into the things I can take for myself. I am taking time to walk when the spring winds in NM aren’t blowing too wildly. I can think when I walk. Thoughts present themselves to me like gifts when I walk, and the fresh air and sunlight feel good. I am taking some time every day to talk with family and friends. They ground me, remind me of life outside of this home and news of the virus, and they make me feel connected. Feeling connected feels good. I am lucky to still be working some virtually, and seeing most of those clients at the same time I see them in the studio. The normalcy feels good. I’m drawing in my journal and writing a lot of letters to Love. This feels very good. You get my point here. Do things that feel good in the face of a global pandemic that doesn’t feel very good at all. Survivorship might not be easy, but it doesn’t have to be awful.

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One of our evening walks. I love these walks so much. We talk and talk and have loads of commentary on the world around us. Quality time defined. And me as usual coming in for some love. I can’t help it. Look at this guy. And I’ve given up makeup completely. Freedom.

I went on a telephonic walk and talk with a friend earlier last week who also happens to be an amazing executive coach. She was telling me about getting some of her clients to indulge in the mental game of reimagining this as the best thing to ever happen to them. What would that mean, or look like, how would it feel? How would their perception of this situation change if they flipped it on its head, and reimagined it as something they had chosen? Try indulging in this for a few minutes, and really let yourself go deep. What if you had chosen this? I dropped into this exercise rapidly when I chose to stay in NM. It’s a muscle I’ve had the opportunity to strengthen. As another disturbance in a steady line of disturbances over the last few years descended, I took something for myself quickly by taking advantage of the opportunity to spend more time with my guy. What would it feel like for us to live together all the time? This was something I had considered often, but my life is good in Austin, and it is so hard to change good things. That was the beginning of the reimagining, and there will definitely be growth here. Lord have mercy. I can also feel other things rearranging, reimagining, rethinking themselves. I can feel them in the fluttery part right below my diaphragm. I don’t know what this growth is, yet, but it will assuredly present itself. I’m not quite there, though, because I’m so recently here, and here is being in this new space, adapting, and finding myself happy in my current situation, if not pretty dazed, and sometimes uncertain. This is kind of big. People usually prepare for changes this big. For months! Settling in to this new space is plenty for right now. It’s a good start, and the nice thing is that sometimes when I get a little (or a lot) freaked out, I remind myself that I took this, and then I act as though I chose it, because I did. I’m not a victim, I’m a survivor again. I’m a survivor who is walking toward growth. But still, fuck. Just when I had gotten back to living.

The thing I know for certain about things that happen to us, is they inevitably change us. In some way, this period will change the way you live. For those of you who are looking at a bleak situation, you will learn that you are more resilient than you ever imagined. Know that you will survive, and you will rebuild. Human beings are freaking amazing beasts. Even if things are still pretty good for you, the period of forced slowing down may show you some things that are essential, and some that are not. This information is precious.

You have been dropped in the middle of a dense jungle. There is a treasure chest in this jungle, and all you have to do is a little bit of hunting to find at least one valuable gemstone. Go on the hunt. Take time to be still and listen to the sounds of the jungle, because no one is giving you a map other than the faith that intuition is waiting patiently to guide you. Welcome to survivorship.

*many thanks to Ad Meliora Coaching for the excellent mental exercise. Do you have friends who inspire you, or make you feel expansive? Now is a great time to engage those people.

 

 

 

 

This Was Unexpected

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This is me, figuring out how to teach virtually. Also trying to figure out what’s going on with my shoulders, because every single picture had this weird right vs. left arm thing happening. Whatever.

This is not the post I was planning to write this month. March is Colorectal Cancer Awareness Month, and I was planning to shame you all into getting colonoscopy’s immediately, especially those of you aged 45 years or older. Did you know the new screening age is 45? You should know this, because the age of bowel cancer patients at diagnosis is trending downward at a rapid rate, but there’s no way I’m asking any of you to schedule an elective procedure today, barring the fact you have rectal bleeding, then I might tell you to get on it. Is coronavirus or colorectal cancer more alarming? That question is above my pay grade. I was finally going to write about Pilates and GYROTONIC®, because from where I stand today, I am able to really speak to the benefits of both in terms of rehabilitation. Why did it take me so long, you might wonder? Because for a long while I was just too close to the illness, and still struggling too much trying to survive to see the forrest for the trees. In light of the world going into lockdown, though, none of this has felt especially relevant, and now, as so many are struggling in this new reality, I find myself on comfortable ground. Luckily, Glennon Doyle’s book “Untamed” just came out, and she described one of my skills far better than I could: I can do hard things. It isn’t a skill I wanted, but it is certainly one I’ve earned.

There will be a lot of people going without paychecks, families unable to see each other, friends separated, life work balances thrown completely to hell, and so many big, scary unknowns that we will find ourselves compulsively drawn to the internet for answers that aren’t actually there. It is a strange, strange thing for the world collective to be living in the great big unknown, and surprisingly I will tell you that it does not feel better to have company here. Come to find out, I liked it better when most of you were on the other side of the glass, because selfishly, I only had to worry about me. Right now, I’m worried about you, too. All of you, and not because I do not know beyond a shadow of a doubt that you can do hard things, but because unknowns as big as this are such an existential mind fuck. If you’ve ever wondered what might be floating around in the recesses of your psyche, be prepared for it to come bubbling to the surface in the coming weeks. It’s okay, and after the initial shock, rarely as disturbing as it seems at first glance.

When I was first diagnosed, and each time I’ve been diagnosed since, other cancer patients strongly discouraged me from Googling, but knew I would regardless of their sage advice. For the last three days, I have been unable to stop myself from incessantly checking the real time infection rate by country and state. The number won’t stop going up, and I am compelled to watch it. This is going to have to stop, now, and the answer isn’t because it’s making me nuts, but because it is taking up precious time. All I ever want is more time to write, and today I have a ton of it. I want to cook more, but always say that cooking for one isn’t as satisfying. I’m staying in New Mexico with my person for the next little bit, so this is a good time to flex that muscle. There are one million and one downsides to this situation. I might not see my family for awhile, and everyone knows I keep them close. I wander through the house like I’ve lost something, and realize that I want my friends. I just completed my final certification in GYROTONIC®, and all I want is a damn tower to move on. My finances just got seriously screwed, but that’s been the norm every time I’ve had to have surgery over the last 5 years. I was getting back on my feet in a real way this time, but…

But, nothing. I’m still on my feet. I know now that I am not so breakable as I once thought I was, and that I’ll be okay. That is the gift I can finally say I got from cancer. These times will pass, and we will be okay. I’ve seen the dark side, I’ve luxuriated in it’s pain, and in the end, I keep finding ways to turn to the light. This is what I want you to do, too, and please, not at the expense of feeling your emotions fully, because you must do that. This whole situation is insanity, but can you kick and scream or cry in a tight little ball or break every plate in your house, and then find some light? Even if it’s just a tiny sliver, what is your light? What do you want to create? What do you want to build out, build up, build bridges to? What are you curious about? What excites you? What do you want to know? I have seen “Fame” so many times that I can almost quote the movie verbatim. Yesterday, I took a dance class from Debbie Allen, and have decided I’m a dancer, now. Today, I downloaded Jane Fonda’s 1980’s workout from YouTube, and kicked it old school. Holy god, I need my leg warmers, STAT! Fyi, my leg warmers are in Texas with the rest of my stuff. I came to NM for the weekend with an overnight bag so that no one besides me would touch my luggage, and then decided that if I was going to be quarantined, I was going to be with my beau. I never anticipated a time where I would be grateful that his jeans fit me, but here we are.

The world is going to feel surreal and strange for awhile. Can you ease into the strangeness? Can you get a little weird, and meet the absurdity of this situation half way? How creative are you willing to get, because I am dying to see all of it! If we are forced by circumstance to slow down in almost every conceivable way for however long this lasts, what are we capable of doing with this precious time? I take none of this lightly, but I spent so much time over the last few years consumed with worry about the future and fear that I would never feel real again and shame over being financially broke that I don’t have it in me to worry anymore because worrying never helped. It was unavoidable sometimes, but it never helped. 

If there is anything at all I can do for you, I will be right here. In the meantime, make me something beautiful or dark, but create so I can be inspired by you. I need it, too.

The Audacity of Hope

President Obama stole the title of my cancer memoir, or at least that’s the way I feel today. Give me a year, and I’m sure I will have moved on to another phase of my healing process, or grieving process, as I’ve come to believe the steps are pretty much the same. Not only did my last CT scan come back clean, but my oncologist pushed my future scans out to every four months. I take this as confirmation that he is beginning to believe I might be alright, after all. While I am very pleased, I remain cautiously optimistic and dubiously perched atop my NED (no evidence of disease) status. Why dubiously? Because I have gotten overconfident in the past, and would prefer not to be caught off guard again, even though if something comes up, I will undoubtedly be caught off guard because I’m feeling hopeful. Oh, the audacity of hope.

Hope is where you start making plans, and stop holding your breath. Hope is where you allow yourself to take chances. Hope is the space where you put in extra effort, because with hope comes a little bit of belief. Over two years ago, my jaw began popping when I ate, pop, pop, pop, pop. I started to call it a click, but such a tiny noise doesn’t do the sound justice. It still pops, because dental stuff is horrendously expensive, but the first time I saw my dentist after it began, he asked if I was having jaw soreness because he saw evidence of “extreme clinching.” After this, I would wake up in the middle of the night, and find that I could barely release the tension in my jaw without pliers. I was in survival mode by day, and translating it to my mouth by night, holding tight to the life raft by my teeth, apparently. Hope, to me, feels like the place where you let go of the life raft (even if you’re staying near), and start to paddle out on your own. Hope is where you don’t peak cautiously around every corner in fear of getting a concrete pie in the face.

2019 was the first year since 2015 I did not have a major surgery. For some, numbers such as these would be child’s play, because many people are dealing with far larger troubles in the world than I am, but that’s their story. Knock on wood, 2020 will become the year we recall they began pushing my scans out further and further. It is extremely challenging to be hopeful when you’re getting scanned every three months. Even when it’s not there, it’s always right behind you, or looming in the distance. It feels like the potential for bad news is always skulking about in the periphery. Reality check, bad news is always skulking in the periphery, but so is good news. The problem with survival mode is that it has you on high alert for the bad, sitting around rabbit like, always watchful, forever startled. There’s a reason they hold you at three months, and the reason is that the likelihood of your cancer returning is significant enough to warrant concern, so it seems fair to quietly be on high alert. Except that you have high alert on double secret probation, because you don’t really want anyone to know, including yourself, that you are still freaked out that it will come back, even though you know that if it does you will do the necessary. You’re a proven survivor, we already know this. Extending the period between scans, even if it’s only by one month, signals hope, and if Dr. Yorio is comfortable being a little audacious, so am I.

Hope is buoyant. Hope is optimistic, cheerful, confident, expectant, and promising, in contrast to its predecessor, Survival. Hope is on the other side of survival. Survival is the best you can expect when your medicine is barbaric, or if there were less therapies available to treat the side effects of cancer treatment. Survival is the best you can expect when we basically cut the cord from cancer patient to ongoing rehabilitative services following an episode of care. From a healthcare perspective, we have advanced far beyond not being able to address many common side effects, and need to begin treating cancer patients that way. Survival is no longer the end goal, because we can do better, and don’t call me a “thriver”.  It’s reductive, and super condescending, although all cancer patients have their preferences in language, so I in no way speak for anyone but myself. Hope is audacious when you’ve been knocked on your tush repeatedly. While survival can put one foot in front of the other, hope helps you to summit the peak with a disco ball on your back.

I saw a post yesterday by a wonder of a woman who was treated for colon cancer 16 years ago. She is the founder of an organization that is committed to awareness and screenings in minority and medically underserved communities, and works tirelessly to raise awareness regarding disparities in healthcare. Her quote, “For 16yrs, I’ve been surviving & not living because I was told I couldn’t do this or that.” This from a woman who is a huge patient advocate and voice in the colorectal cancer world. If she feels as though she’s been “surviving and not living” for the past 16 years, it tells me we are missing something huge in cancer rehabilitation.

It is time we all started to act as though survival is only a step in cancer treatment. You survived, for now (because we all know that you only know you have survived cancer when something else kills you first), but what is it cancer patients need to feel as though they can live? Is it financial counseling, pelvic floor therapy, mental health services, a great exercise program, or perhaps a nutritionist? It is time to stop behaving as though finishing active treatment is the end of cancer care needs, because if we have our patients trapped living in survival it makes it difficult to get to hope.

 

 

 

 

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.

 

 

 

 

 

 

Love in a Time of Cancer

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Ah, love, is there anything in the world at all better than a new romance? Heart pounding, constant distraction, cartoon birds tying ribbons in your hair, starry-eyed amor. It’s seriously the best! Last summer I fell all the way in love with a close friend from my grad school days, so close, in fact, that he was a guest at my wedding. In a flash of brilliance after seeing him on family vacation, it occurred to me that he was beyond amazing, and I wanted to kiss him all the time. Luckily, he felt the same way. 4 months later there we were, in the most fun and easiest relationship I’ve ever experienced (despite him living one state away, or is it because? hee hee), flying back and forth, being super happy, and really feeling the weight of the last few years lighten by the day. There’s talk of commitment, there’s talk of relocation, and then bam, there’s cancer.

While he was very aware of my history, he wasn’t here when I was going through treatment, or after, so there was a nice, abstract quality to my illness; cancer was the past and we were the future, and aside from some gorgeous scars and inconvenient side effects from treatment, it was hard to believe I had ever been so sick. But there it came, blindsiding me on an overcast Monday, 3 days before we left for a wedding in CDMX, and then the questions followed, “do I tell him now, or wait until after Mexico City? Do I tell him in Mexico City? How do I tell him? Does he need to know the scary details, or just the immediate ones?” I was single when I got cancer, found that during treatment was no time to date, and then didn’t have the bandwidth to even think about it until almost 2 years later. This conversation was uncomfortably outside my skill set, but my beau isn’t someone new to me, he’s someone I’ve known for 19 years, and to whom I’m accustomed to speaking very freely. So in the end, it took me a little over a day, but I clumsily told him what was happening followed by immediately requesting we make CDMX about the celebration, and then deal with my health after. I meant this. I had known of the engagement long before it happened, had been preparing for this wedding since summer, and I needed to celebrate the successes of my life and of my friends. In my mind it was simple, in practice it was, like most things, a little more complicated.

My closest friends are like family, and they know the cancer drill. Lots of love, lots of laughter, some righteous indignation that this has happened again, and onward to bolstering me up so much that I have no choice but to heal. My sweet guy, however, hasn’t had to deal with much illness in his life or in his friends lives. His parents are elderly and have their stuff, but that’s more expected than your 47 year old girlfriend who has suddenly grown stiff and cold (or in her inner world is bracing against unpleasant days to come). The moment I got the news of my new lesion, that starry eyed romance was put on “hold,” outside of my mental and emotional control, and every instinct went to survival. Please understand, this isn’t “preserve my life at any cost” survival, it’s “don’t let the demon drag you down” survival, and actually takes scads more focus and energy.

We met in Mexico City with me fluctuating unpredictably between joy and anxiety, my greatest joy being reserved for the events, gatherings, and celebrations of the gorgeous couple, and my anxiety lighting in the quiet moments when I had the unwanted opportunity to sit with my thoughts. These were very often also the quiet moments I was sitting with him. I was distant and uncharacteristically hard to please, he didn’t know what to say, I was a bit short-tempered, eventually he became frustrated, we continued to work it out, and I spent the time trying to figure out what was wrong with me, while he spent the time trying to be supportive in the best ways he knew how. I needed him to ask questions, but had explicitly requested we make the weekend about the festivities, and I needed him to baby me a little, but can come off as an island, giving the mistaken impression that I’ll take care of my own damn self. (But that’s not real, and in a way I desperately want to be taken care of, because life is exhausting, and who doesn’t want to be cradled sometimes with someone cooing in their ear that all will be well, but god it’s difficult to ask for that without feeling like a complete baby). I was irrationally conflicted in ways I wasn’t even aware were possible, and failed miserably in verbalizing this to him.

There were little light bulb moments when I heard the chorus in my head that I’ve taken great pains to mute, and it was telling me that even if the docs say it won’t hurt as much, it will still hurt, and you can’t share that pain with anyone. You are alone in the full knowledge of the ways in which your body, and mind, can ache, and no one can take that on for you, nor would you let them. I was able to recognize that all my surplus reserves of positive energy were now being directed towards me, and how it must feel to him to no longer be on the receiving end of an adoring light that had been shining his way for months. And I finally acknowledged that cancer triggers me, and the emotional scars I’m carrying need some tending, too. This is tricky, tricky, tricky business, and it’s even trickier to share it with someone you’re intimate with. What if he stopped seeing me as his super fun bedmate, and started seeing me as someone who is sick? I couldn’t take that, and even if this was an old friendship, it is a relatively new relationship, and I want that to stay gold for as long as possible, and have since learned that it still can even without the illusion of smooth waters.

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CDMX November 17, 2018 at arguably the finest wedding I’ve ever had the pleasure of attending. And I got to go with him which is kind of the best thing ever.

In the end, the weekend will be remembered as one of our best, and exactly what I needed to fortify my desire to bounce back vigorously from yet another surgery, because the highs were so high, with the lows being easily attributable to what I was processing. And while we didn’t figure it all out in those 4 days, we did break the ice on how to (and often how not to) talk about my personal boogie man, which apparently I had been avoiding, because I wanted to keep what was quickly becoming one of the best things in my life from the worst. My surgery went well, I woke up in recovery thinking that if he were holding my hand it might hurt less (the upper lobe did hurt less than the lower lobe), I was lucky to have doctors who listened to me about my preference in pain meds (and at this point I certainly have one), I healed with the same efficiency I have in the past, and I celebrated the new year at Taos Ski Valley, barely short of breath at 9,000 ft.

It was in Taos that a conversation with my oncologist, and my thoughts about what it means to live well, finally solidified into an experiment of sorts for the new year and set my course for 2019.

“We are stronger in the places we have been broken.” – Ernest Hemingway