Marking my 2-year Cancerversary with Gratitude and EXHAUSTION!
This week I marked 2 years since being diagnosed with stage 3b rectal cancer (NOV 2021), and the last couple of weeks have been a roller coaster ride of emotions, mental and physical exhaustion. I’ve come to the realization that surviving cancer is just the beginning: that recovery after remission takes a very long time, and that staying physically and mentally healthy after cancer can be just as daunting as fighting the cancer itself! I started this post during one of my “dark night of the soul moments,” during that time of scanxiety and follow-up doctors appointments, bloodwork and the wondering (what if?) that goes along with being a cancer survivor in remission. As of today, I am back on the upswing of gratitude, good thoughts and positive vibes, but a recent quote I saw really stuck with me:
The failure to think positively can weigh on a cancer patient like a second disease! ~Barbara Enrenreich
Thus, what started out as a simple social media post to list some pretty eye-opening stats from the last two years of my cancer journey, quickly turned into this much more extensive blog post. Even though I am smack dab in the middle of a blog series on “Treatment Survival Tips,” I will continue with it soon, but I had to take a step back because revisiting treatment in the state of mind I was in was really NOT a good idea. I hit a wall, that I should have been, but wasn’t entirely expecting.
If you’ve met me you know I often find myself juggling chainsaws instead of cute colorful balls and that I have a strong sense of responsibility for keeping all of those saws in the air lest I or someone in the vicinity gets maimed. Doc and I had agreed that I had ONE JOB during cancer treatment, to get well and I tackled it with my usual verve! Then, I realized early this summer that all of the things that got back-burnered due to cancer now had to get done and I set out to do them ALL — and apparently all at once — while still in cancer recovery mode. GO ME! 🤦♀️ Old/bad work habits die hard even after the cancer wake-up call! That is not a brag BTW. I believe stress contributes to cancer and other DIS-eases so I would seriously pay for the magic potion to slow the fuck down and turn off my mind a bit — without disease having to be involved. And, speaking of disease…
My 2-Year Cancerversary
As I said, this week marks my 2-year #Cancerversary. This is my least favorite anniversary to mark, as I would rather celebrate other positive milestones like my Rebirth Day — The day they declared me “in remission” or NED (no evidence of disease)! So why bring it up? Because, as in all things there is great perspective and learning to be gained. Today, I speak for myself and the many others who go through the same things I’m about to share with you, and ask for continued compassion and kindness for us all.
The REAL Life of A Cancer Survivor, Statistically Speaking
In order to put things into perspective, I decided it would be “interesting” to add up the sum total number of medical, mental health and integrative medicine appointments that I have had in the last two years since being diagnosed (including those leading up to diagnosis which was a process in itself). These include chemo, radiation, prescriptions, procedures, surgeries, doctors visits, PT visits, needle sticks (bloodwork), scans and more — as well as all of the Alternative Medicine I have incorporated into my wellness journey like therapy, reikki and spiritual healing appointments.
And because I am nothing if not a maximizer who loves to over-orchestrate, just for fun, I decided to add all the days/hours/minutes I spent in meditation, visualization and mindfulness. While I was at it, I had Doc calculate our mileage to and from the in-person appointments because most of my in-person appointments are between 60 and 90 minutes from home. For example, just the month of October 2023, I had 7 appointments that I had to drive to! More than any other month on record — and again this is in surveillance mode!
Why stop there? I also decided to calculate the # of hours I spent exercising even throughout treatment because I wanted to recognize my physical efforts at maintaining fitness even through tough treatment phases.
The tally is below! Interesting is an understatement. I was shocked! The stats below are also captured in this video depiction.
In two years time…
$531,198 in medical insurance claims (includes diagnosis)
$98,592 in out-of-pocket costs — $30,000 of which are out of network and can’t be applied to a deductible
Compared to Colonoscopy which averages $3081
295 Cancer-related appointments including all medical appointments as well as mental health and integrative/complementary medicine appointments (as mentioned above).
15,566 Miles traveled for appointments
104 Administrations of drugs and/or prescriptions. This includes chemo drugs so some drugs and prescription refills are counted more than once. This number does not include drugs administered for scans or surgeries.
97,400 Minutes in 582 Days of meditation and mindfulness to keep my head on straight! Calculation from the Insight Timer App (LINK) — Does not include additional meditation minutes from Apple Music and Spotify.
100,236 Exercise Minutes to be and stay well! This was a little tougher to calculate due to the limitations of the Apple health app so I had to estimate as best I could from the data provided. Given I exercise every day of the week with few exceptions, even when I was in treatment, I took the daily average for the year and multiplied it by the number of days — and yes, I took a few days off for the sake of argument.
What did you think when you saw these stats? I’d love to read your thoughts in the comments. Doc’s first comment was, “And you wonder why you’re exhausted?” 🤷♀️
My Inevitable Meltdown
You may wonder why I even thought to tally all this up?
Recently, I had a meltdown in terms of my #CancerRecovery. I haven’t had many, but when I do they are a big wake-up call — This one inspired my first My BadASS Life VLOG post, “BadASS Reality Check.” In the VLOG (and during the meltdown) I had to admit that I’m exhausted, overwhelmed and disillusioned with how much work being in recovery from cancer takes and how tired I am from trying to do it all PERFECTLY! They call it a cancer hangover!
It happened two weeks ago at Physical Therapy (PT) — I’ve now been doing PT since Jan 2023. Let me set the stage: I had just found out that I had scans coming up — I thought I wasn’t due until February — so surprise, so then the #SCANXIETY hit out of nowhere! No matter what you do, 99.9% of you can believe you’re fine but that .01% keeps screaming its head off driving even the sanest most logical person mad! 🤯 But I digress…
I go to PT each week for pelvic floor therapy as well as for Frozen Shoulder therapy (there is some evidence FS could have be a latent side effect of chemo). That day, my PT asked me what I thought my progress was to date, and I just burst into tears. While there has been marked progress and success along the way, there are also still plenty of challenges. In that moment, I realized just how tired I really was.
PITY PARTY COMING! I was tired of always feeling like I have to be Polly Positivity because badasses don’t cry (100% self-imposed), and tired (in that moment) of the ride-or-die attitude I’d adopted. Tired of the emotional toll of worrying about staying well and not falling out of remission, Tired of all the PT exercises for body parts (including the intimate ones) that no longer work on autopilot like they used to, and that I took for granted. Tired of praying, meditating and affirming; wondering what’s wrong with me that I have this second chance at life and yet I’m still not, STILL, present, mindful ENOUGH? Still too busy, too chaotic, too stressed, too anxious, too scattered, too frustrated with humanity and too in-tune with freaking everything and everyone and worrying (still) about what other people think. 🤦♀️ Tired of carefully choosing, eating, and chewing endlessly to digest foods without a backlash from my semicolon. Tired of trying to get the freaking impossible Imodium packages open! Tired of researching this study or that thing or supplement or theory for staying in remission. Tired of appointments and being stuck by needles in veins that no longer cooperate. Tired of feet that tingle and feet and hands that react to cold, toenails that crumble and look like they belong to an old lady, and speaking of old ladies, my private parts…Oy! Tired of still losing words especially when I’m tired. Tired of continuing to have to explain wearing a mask in public and making friends covid test because 1) I simply don’t want to be sick again, EVER!!! 2) And, because my white blood cell count hasn’t recovered nearly to the degree I think it should before I will feel safe — In fact my bloodwork from two weeks ago came back a whole point lower, back to just below normal. WTF?!? 🤷♀️ Tired of not having the energy and stamina I used to have to keep up with the energizer bunny I live with. The list goes on. Like others before me, I am two years from diagnosis, 1 yr and 4 months in remission, 1 yr and 2 months since the last surgery and YES, still freaking recovering! Thanks Cancer! 😡
I never thought I’d say this, but I miss being normal, and trust me, normal was never really a thing for me!
If you take nothing else from this post today, please take this:
There is a lot of misinformation and outdated information out there about how long it takes a body to truly recover from cancer treatment. I am shocked and I’m living it! I am busting my ass almost every day exercising an hour a day most days (I did that before cancer), eating right (with only occasional indulgences), practicing healthy habits, meditating, dancing, weightlifting, supplementing wisely, etc. etc. and I’m here to tell you that the length of my recovery and the remaining physical and mental side effects ARE the NORM not the exception. Based on my conversations with other survivors. I am not a unicorn. 🦄 It is like this for SO MANY of us and yet many of us don’t speak up, because it sounds like whining or God forbid we may sound — gulp — ungrateful. The world hears remission and poof ✨, it’s supposed to be like a time machine where we go back to a life before cancer…
I GET IT! I mean, I thought so, too; and friends and family only have so much bandwidth for this shit. But it doesn’t work that way. AT ALL!
I seriously thought that after I was declared NED I would have a break from “being sick” and worrying about “being sick.” I had no idea the toll months of cancer treatment takes on a body, mind and spirit and how truly long it takes for a body to get back to any definition of normal — especially a perfectionistic one — and I had no clear idea of how much medical and mental help I would need in the process. I mean, I expected it after diagnosis. I knew I had shit to fix in my life and my mind if I wanted to get through treatment and have a second chance. But now? I worked through so much crap I thought for sure I’d be great at this recovery thing and that it might even be a walk in the park compared to treatment! WRONG! Most days I am grateful and positive and even full of self-love and encouragement. But, I am and always will be that perfectionist who also doesn’t want to let others down — family, doctors, spouses — MYSELF! Inevitably though, approaching the Cancer Journey and subsequently post-cancer journey with this level of intensity has been both eye-opening (not in a good way) and exhausting. Is it any wonder I spouted a tumor?!? Though I continue to try to curb my pursuit of perfection in recovery and just BE, I admit my mind has other ideas and being in my mind at those times is like watching the heroine in a scary movie walk right into danger without a weapon or so much as a clue, as if she hasn’t seen a million scary movies before! So, it’s time to take an intermission from the crazy. Whatever that looks like?!
For those of you thinking, “Stop Whining! Don’t you have it better than someone who is still in treatment?” Hell yes, I do — because that shit is hard! AND, you’re not saying something I haven’t said to myself already more than once (thanks for triggering the “Survivors Guilt” there), but here’s the thing about FEELINGS, they are all REAL and RELATIVE and they don’t like being cast aside. I literally just saw the funniest most serendipitous Instagram post today where someone compared emotions to FARTS! I couldn’t agree more!
💨 Emotions are like Farts! Holding them in hurts, some make you laugh, others bring tears, some are silent, others clear a room, release them to forcefully and you’ll make a mess! 💨
There is another aspect to all of this as well. The mounting pressure that I put on myself to get shit done! Amy can’t pick up the slack in our lives forever. It’s interesting, how so much of this also comes down to my “to do” list. Because during that year of treatment, my “job” and focus was to get well. I actually did let a lot go. If it wasn’t healing for me, I tried not to do it. But as I mentioned earlier, I didn’t really let all of it go. Those to do list items are growing and clattering around in the attic of my mind like a ghost at Halloween. So now, for every minute that I am in an appointment or traveling to one, it’s another thing on my to do list that doesn’t get done. Which is starting to be very stressful, which makes me feel like I need to go back to how I operated when I was in treatment to alleviate the stress. But then what do I let go of and what do I keep on the to do list and how to decide? I can’t ignore the to do list forever — though that would be nice. Unfortunately, I’m wired to create more to do’s and not less! 🤦♀️ This is where I say that I don’t know how people with younger kids or demanding spouses and jobs do this cancer thing. I also don’t know how people do it alone. Trying to juggle all of these things, along with the mind fuck, would be maddening. Kudos to those of you who are doing this better than me. I mean that from the bottom of my soul. YOU are the real inspiration!
This Too Shall Pass
Everyone’s situation is relative to THEM at that moment in time. Today I am back to more of myself. Smiling, grateful and ready to tackle another day even if it includes an excess of fiber, 90 minutes in the bathroom, vaginal dilators and Imodium. Today I am happy to be here, alive and well and to have the privilege to complain about the last couple of weeks.
I feel infinitely blessed to be in remission and like many of us, just hit a temporary wall in my recovery. I keep reminding myself It’s ok to take a break from it all, and after that, I will be pulling up my big girl depends and getting on with life again. I do think it’s important to reflect on what got me here, and what I need to do to avoid getting here again. While future meltdowns may still be inevitable, it’s time to regroup and do my best to prevent them by truly practicing self-love and not taking time for granted. I almost said “re-strategize” and “re-think”, but isn’t that the kind of crazy thinking that got me here? 😂 What’s more important today? Spending quality time with my wife or posting 3x on social media to keep up our following? So here is what I’m going to try instead:
Less Thinking. More Being!
Less Doing. More Allowing!
Less Controlling. More Trusting!
Less Because I Have To. More Because I Want To!
Less Focus Outward. More Focus Inward!
Less To Do. More To Be!
Less Frustration. More Love.
Less Self-Criticism. More Self-Compassion.
Less Questioning. More Believing.
LESS IS MORE!
Could be easier said than done, and since I’ve got to turn off the inner perfectionist for this stretch we’ll see how it goes. Wish me luck! 😉
I’m also going to do a few fun things for myself that will make me feel better about me, like painting my toenails (to cover those suckers up) and dying my hair purple!
I hope that today’s writing will help someone else who is going through what I’ve described. Much of what I write is in solidarity with other survivors to help you feel validated when you go through you own “Dark night of the soul” moments. We all get here and when we do it’s good to know that:
It’s OK!
It’s NORMAL!
It gets BETTER!
We have a CHOICE! (To stay here or move forward)
It’s OK to ASK FOR HELP!
Today’s post is also in an effort to show others who have not experienced cancer (and hopefully never will) what it takes to be a #CancerWarrior, and to help people to understand that our journey is never really over. Despite all efforts to the contrary, we will and always will be Cancer Survivors. There is a mental, physical and spiritual impact to that label that can carry with it everything from elation (if you are in remission) to PTSD (from all we have been subjected to in order to get well).
I am not special or unique among cancer patients. In fact, they’re a lot more people like me than others realize. I’m just one of a few of us who is willing to speak up and say so.
All this said, I’m going to take my time getting to the next article in the survival series — chemotherapy treatment and VLOG for the next few. Quite honestly, I think I got a little overwhelmed re-living it when I wrote the first draft, so I’m going to take a step back from it until the timing is right. Thank you for understanding.
As always, your support means everything! 💙💪
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