Where is my Care Pathway?

Recently, I’ve found myself increasingly interested in the aftercare for women’s colorectal cancers. Men, it’s not that you don’t concern me, it’s just that I don’t know if we have the same issues. Any of you feel as though you’re going through early menopause? One would think that 3 years out from active treatment, most of my questions would have been answered, my medical team would have me on a solid plan to treat any chronic side effects, and things would mostly be under control. On the contrary, at 3 years out I have more questions than ever about my follow-up care. Yes, I see my medical oncologist every 3 months, but that’s just because I keep getting cancer. If things had gone according to plan, I would actually be at once a year by now. When I see my onco, we chat about whether or not there’s something in a lung, quick question about how I’m doing, and off I go for another 3 months. We are still treating the cancer, but haven’t really addressed the larger scale chronic side effects. When I go in to see him for my check-ups, I’m a rubber band ball of anxiety, and terrified every time. Can you blame me if I forget to ask about a bone density exam?

No cancer is ever desirable, but there are things we’re more comfortable with, like blood, bones, lungs, and breasts. People love breasts. We suckle at the boob, are held tight to the bosom, and consider breasts to be PG-13 accordant. No one has that kind of relationship with the rectum, or the vagina for that matter. In truth, I believe it’s because we see the rectum as dirty, and most men have never actually figured out the vagina, so there’s a sense of failure there that makes it incompatible with their medical skill. On my first visit to MD Anderson I met with all of my doctors over two days, at which point I got an earful that left me somewhat catatonic for the following few weeks. Somewhere in there, a PA told me I might have some fibrotic scarring from the radiation to my pelvis that could cause sexual dysfunction, and if that happened I had options. It was part of a long list that included my 95% chance of spontaneous hip fractures in one or both hips by the time I’m 75 from osteoporosis caused by zapping my pelvis, radiation burns, the probability of being thrown into early menopause, and the side effects of the 180 chemo pills I would take over the period of 29 rounds of radiation with a 5 day booster at the end. My brain was over-served, and anything that didn’t immediately affect me flew right over my newly diagnosed head.

11 months and a lifetime later, I was out of active treatment, 6 months after that, I tried to have sex. Almost 1 1/2 years after I was told I might have pelvic floor troubles. Whatever your thoughts are here, I had been distracted by a battering of life events, and had not been thinking about my libido, but when I did, it was enlightening. The pain was so bad that penetration wasn’t even close to an option. It was mortifying, and another reminder that I got to enjoy a “new normal.” I was psychologically devastated, but because of my PT background, and years of referring other women, I knew to ask for pelvic floor PT, which had a huge impact on not only my sex life, but also my bowel functioning. Remember, it’s all connected, but if I hadn’t have asked, it wouldn’t have been offered. Why wasn’t it offered after I had healed from my radiation burns, or as part of general follow-up care, because regardless of if you’re having sex or not, anyone with that much trauma to the pelvic floor should get a PT referral.

The first day of my last period ever was was the first day of my chemoradiation at MD Anderson in June of 2015. The powers that be are a real hoot, aren’t they? That was almost 4 years ago. Am I in menopause? Who knows. I have hot flashes, or spontaneous scorchingly high fevers for shortish duration, occasionally or with some regularity depending, and sometimes I feel a little crazy. Everyone, meaning doctors, asks about my cycle, and everyone accepts that the radiation fried my ovaries, but beyond that, no one seems too interested. Remember how I said I was told that I would spontaneously break one or both of my hips someday because of osteoporosis from the radiation? Has it ever occurred to anyone to request a bone density exam for me? No. And before you get on your uppity old high and mighty horse about me being my own best advocate, let me just tell you that I’m fatigued with being my own best advocate, and would like some help.

Where is my care pathway? All of my friends and clients with breast cancer have had ongoing care pathways, and comprehensive follow-up for the chronic side effects from treatment. So seriously, where is my care pathway? A client was telling me the other day that her osteoporosis following radiation from breast cancer had reversed to osteopenia because of a few years of a bone drug, and true dedication to physical activity. This was excellent news. How did she get her first bone scan? A referral from her oncologist. Another friend post-treatment for breast cancer was telling me about her hormone treatments due to being thrown into menopause from her cancer drugs. How did she know about her hormones? Because of a referral from her oncologist. Did either one request these referrals? No. They were part of a care pathway.

As a 47 year old female who suffers side effects from a somewhat debilitating cancer, I am sitting around wondering where my care pathway is, and why I’ve had to figure so much out for myself. Bowel cancers are on a meteoric rise in the under 50 population, which means a lot of younger women are going to be living with the chronic effects of treatment. What are we doing for us? I’ve had excellent ongoing care for my recurrences from my medical oncologist in Austin, but he is young, and he looks at me and thinks I’m doing amazingly well, generally. My menopause, bone density, and sexual function are not on his mind, but they should be, because I’m pretty sure that my PCP is assuming this is an oncological issue, and I agree with her. A quick Google search provided me with at least 10 different breast cancer resources in the Austin, TX area, if I expand that search nationally the options are staggering. The same search for colorectal cancer resources provided 2 specific ones through our main cancer centers, and I can tell you right now that those are mostly lip service, then a dozen general cancer resources. Otherwise, us bowel cancer people are doing it for ourselves. The online community is thriving and knowledgable, but it has taken me 4 years to track those communities down. 4 years where I struggled. We need to fix this.

While I continue to be unimpressed with the guidance I got on diet, exercise, and general solutions for common long term side effects of treatment, I am even more disappointed with the the attention paid to my women’s health issues. They are no less devastating or important than those of our breast cancer counterparts, and have been largely overlooked in cancer care. With the rise of colorectal cancer in the under 50 population, it is imperative that we begin to develop the appropriate chronic care pathways for people who have lived through treatment, and I think it needs to start immediately.

 

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

 

 

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.