By the waters of the Thames
I resolve to start again
To wash my feet and cleanse my sins
To lose my cobwebs on the wind
To fix the parts of me that broke
To speak out loud the things I know
I haven’t been myself…
Frank Turner, “The Angel Islington”
Half of a year. Half of a year has gone by since I sat down to write out my resolutions for what could be the last full year of my life. Of course, most resolutions are meant to be broken. So how have I fared in my endeavours?
- Eat more fruits and vegetables
- Eat more nuts
- Walk, do yoga or some other form of exercise every day.
- Get better about staying hydrated
- Try to get on a more consistent sleep schedule
Okay, so all of these things were a tall order, but I was doing them pretty well up until March/April. I was walking an hour a day, and morning yoga most days. I was eating more fruit, vegetables and nuts.
And then surgery changed pretty much ALL of that. The rest of my colon (large intestine) was removed, and my colostomy changed into an illeostomy. More adjustments for my body. I was told to eat like a 5-year-old; no fiber for 6-8 weeks and then slowly start adding back in. I had trouble eating at all for a good part of that time frame, and am still just slowly adding back in. Oh, and since my colon was responsible for absorbing most of the fluid from my foods, I need to stay hydrated at all times and am drinking G2 Gatorade drinks, which is basically sugar water with electrolytes. Hooray for healthy eating!
As for exercise, I have worked myself back up to a 30-minute walk on most days. I haven’t started back on yoga, first because of back issues and then just having trouble getting out of bed for it. My sleep schedule also got way out of whack after surgery as I could not sleep many nights and started day napping. I am working my way back slowly to all of these resolutions, because I think that they are good ones.
6. Come up with a system to track symptoms. Good idea, but I am dragging my heels on this for some reason.
7. Advocate and be proactive with doctors and research medical options.
I can say with certainty that I never would have had that surgery had I not been informed and proactive. I can also say with certainty that I didn’t go far enough.
I should have insisted on seeing all three surgeons again after the month delay in my surgery, and not just the liver surgeon leading the team. If I had, I could have pointed out my ovarian cyst and double-checked that the surgeon covering that part was going to check to see if it looked suspicious when he had me open. Since I didn’t, we hadn’t spoken since 2.5 month prior to the actual surgery. Instead I stepped back and told myself that surgeons at the Cleveland Clinic are highly skilled and respected and that I could trust that everything would be checked and taken care of. I was wrong.
Lesson learned? Never dial back on advocacy. If you want individualized care as a cancer patient, you have to be your OWN doctor.
Otherwise, it will be rushed physicians who apply a plug-and-play approach, because they need to wrap up your appointment and get to the next. Even on the smaller things. Like adding a new standard of care drug to my chemo regimen. “Yes we can add that when it’s been two months after surgery.” My surgery was April 10th, but my last two appointments have been with the nurse practitioner who is either too nervous to get the doctor to sign orders for it or forgot altogether. I will be finally getting it at my next treatment. A full THREE months post surgery.
- Feel, then let go of my negative emotions.
- Meditate every day
- Journal every day.
- Hug the people I love every day.
- Spend more time with friends.
- Have deep conversations, and say how I really feel.
- Spend more time outdoors and get out into nature as much as possible.
- Go to concerts.
- Play (at anything), laugh and have fun.
I think that I have been doing much better with these resolutions, with a couple of exceptions:
- I haven’t done much traveling yet, but these things have to be well-planned between surgery recovery and chemo. I plan to make this up during the second half of the year. This includes an all-girl road trip with friends (something that I would have never stepped out of my comfort zone to do in my “pre-diagnosis” life), and weekend trips visiting family and friends. These will help me to fulfil resolutions 4,5,6,7, 8 and 10 all at once!
- I missed out on a couple of concerts that I would have loved to go to, but was too sick to do so. I didn’t buy tickets to that Frank Turner show in Cleveland. We stayed home during the FOALS concert we had tickets for because I was sick. And while not technically this calendar year, we also had to skip out on purchased tickets to see the Decemberists last fall because I was still only about a week out of the hospital from my first surgery in September. But I’m making a comeback! We were able to see Vampire Weekend and the National in recent weeks, and I have a couple more that I am hoping to make it to before the end of the year.
- After my diagnosis I stopped meditating every day. After my postponed surgery on March 8th and everything thereafter, I stopped altogether. I’ve tried to get back into it, but still only convince myself to do it 1-2 times per week. I’ve thought a lot about why this is the case, and I think that it comes down to the app I am using and it’s daily themed messages:
- Nothing is permanent. Your pain isn’t permanent. The voice echoes over, soft and friendly, but all I can think is, “actually lady, my research tells me that from a physical perspective, it is likely that today will always be the best day I get to have. Seems pretty permanent to me. So does dying.”
- You can’t control the waves, but you can learn to surf! Okay, I get this. It is better to find a way to ride with the suck than to constantly struggle with it and get pulled under. But the examples that they use in the lesson? They all seem so small and fixable to me by comparison.
I am working on my own way to ride these waves that seem so determined on either pulling me under or crashing me onto my final shore about 4 decades sooner than I expected.
Call it a new-found bitterness, but I just can’t abide any lessons on how to best handle this type of adversity from anyone who hasn’t stood in my shoes. Who hasn’t had doctors tell them bluntly that there is no hope for a cure. That no matter what they do, that the peritoneal disease will always come back. Until you’ve been forced to face something like that, you have no idea how you would really handle it.
So I guess that’s why I stopped meditating. I am struggling with one-liner solutions to a very dark, complicated and permanent problem. It occurs to me how very privileged it is at all to be able to solve a problem. To fix it or walk away. Or to change your mindset and wait for the difficult situation to pass.
If you woke up this morning assuming that you will still be here in five years, you are privileged. Of course, that’s something that I never fully realized myself until I suddenly had that privilege taken away. Whatever problem you are facing, you still have time to solve it and find a door to greater happiness that will carry you for the rest of your life. Don’t squander that or ever take it for granted.
I wish that I had a time machine and could go back to 3-4 years ago when I was trying to take a leadership role on a new work project in an environment that would only grow more toxic.
I wish that I could tell myself to not let my identity and mental space get sucker-punched and consumed by trying to find my place on a team that refused to let me. I needed to let go of the mental anguish this caused and focus more on the good things in the rest of my life. I should have been focusing on the people that loved and cared about me; not on a culture that shut me out and rewarded grown men for (on separate occasions) yelling at me, using derogative language, talking over me every time I tried to speak and outright calling me names.
My own boss, two levels up, was among those responsible. He limited my communications with my project team so restrictively that I couldn’t do my job effectively and was set up for failure. It went something like this:
- My counterpart loses his umm, marbles, yells at me and instructs the rest of the team not to listen to me.
- Boss’s response: I shouldn’t have disagreed with my counterpart within earshot of the other team members because it put him on the defensive.
- Solution: Set up weekly one-on-ones so that I can express concerns or disagreements without other team members hearing.
- During the weekly one-on-one my counterpart tells me that “He doesn’t give a rat’s ass what I think.”
- Solution: Agreement that this was inappropriate. My counterpart and boss agree that there should be no more one-on-ones (with the implied undertone that since there were only two people in the room and no witnesses, that I was lying).
- I ask why a schedule date changed in the schedule meeting, inviting ire and retaliation because there isn’t a good response.
- Boss’s response: I shouldn’t question or disagree with a date in front of my counterpart’s supervisor, who attends all schedule meetings.
- (My) solution: I stop going to schedule meetings because if I am not allowed to provide input my silence becomes implied agreement/acceptance.
- I request an expectations meeting with both levels above me to gain understanding of how I can and should communicate with my team.
- Boss’s response: “I think that an effective approach for you to ask questions might be to play the role of the dumb blond.”
See a pattern here? The message was verbalized to my thusly: “Let the Team Manage Their Own Program.” Read: shut up and color, smile and nod, and dumb yourself down. The problem with this is that when everything goes south, the accountability still falls to me. There was literally no path to what could be determined success by the expectations given to me.
This led to living two to three years of my life with daily chronic stress. Is it any wonder that I blew off my symptoms, once they started, as stress? Studies are now showing that stress can significantly alter your gut bacteria, which can then lead to a whole host of medical problems. I do believe that chronic stress was a factor in my cancer development and/or the speed of it’s growth.
But I also know that it’s more than just that. The human part of me wants to find a single cause to affix blame. It’s easier than accepting that all of this happened because of a combination of factors. I should have taken better care of myself. I should have listened more to my body during this time. And I also have to realize that one of the reasons this happened to me was just horribly bad luck. Tell me, how do you accept that for an answer?
A post-surgical colonoscopy found absolutely nothing else suspicious, which means that a SINGLE cancerous polyp, left undiscovered, continued to grow and spread. And by the time I finally found my way to an emergency room it was too late.
And for what? Absolutely nothing. The work project eventually finished, and, as should have been expected, I never pleased the people I was never going to please. I couldn’t escape the project, because the reality is that nobody else wanted to touch it with a ten foot pole. But I do wish that I had found a way to invest less mental space toward an unfixable, but ultimately impermanent situation. I should have spent more time with the people who loved me and sucked up that joy with every fiber I could instead.
That aside, going back to my original point before I stepped on my soap box, I think that the best approach for me is to go back to meditating, but use a silent one instead. I need my own mantra for figuring out how to make peace with all of this.
1. Make special time with each of my kids
2. Make special time with my husband
3. Leave a record of who you are (blog, letters, etc.)
4. Tell people that you love them.
5. Find ways to show others that you care
6. Mentor and assist others (at work, or elsewhere)
7. Find ways to give back
8. Prepare for the ending.
I think that I am doing pretty good with most of the above. I need to work on growing 5 and 7, and I need to do more with #8. Because let’s face it. That’s the hardest and scariest one and I think that I am putting most of it off (final arrangements, writing my obituary, letters to my husband and kids) until we finally get the scary news that signals we are reaching the final lap.
I am not currently working, and probably will never go back to my career. This was not easy for me to do. I had been in a new office and environment for only 6 months and it was like a breath of fresh air with good people, good culture and good leadership. I had only been there a month when I ended up in the ER and got admitted to the hospital where I received my diagnosis. And then came all of the time off for surgery at a crucial time of year, then chemo. For a while, I pushed through for the mental distraction and because of my pride in my job. But ultimately, between my frequent time off of work and all of the underlying mental and physical issues I was not fully able to not give them the support and time they both needed and deserved.
Between appointments, treatments, scans, surgeries, and time for researching trials and treatment options, cancer has become nearly a full time job in itself and I need to focus on that right now. Still, this wasn’t easy. I had a 19-year career. I always had a good answer to the question “what do you do for a living?” I’m not sure what to say now. Do I mention the career that I may never return to? Or say, “I used to…?” Or something else?
Oddly, the more I develop this blog, the more I realize that it is also fulfilling, to some extent, resolutions 3 and 7. I have some readers from the blog posts published on “The Mighty,” some from my cancer support groups, some from my indie rock groups, a few from the WordPress reader app and of course friends and family.
It started out as just wanting to tell the story of my journey and how it has effected me. Filters off. Some posts will be angry. Some will be sad. Some will be hopeful or any combination thereof. All of my posts will be real.
It’s becoming more than that. The world needs more people who can tell the whole story of their experiences. When we whitewash the ugliest parts of going through the process of receiving an advanced cancer diagnosis, when we put on a face and try to play the part of the inspirational cancer survivor we deny the full truth of what it is like to find out that you 1) have the disease, and that 2) it is extremely likely to kill you. This needs to be told not just to those going through this right now, but also to others who have never been close to it all.
I have heard from fellow mothers of young children and late-stage cancer, “Thank you for articulating that. You’ve captured exactly how this feels.” I hope that some with new diagnoses can get from this that it is okay to talk about being angry and sad and to not just play a part to please others. I have also heard back from several healthy people that I have never even met that they read regularly and are following my journey. I hope that my blog has provided them more insight into this experience, and I hope that it inspires them to live their life more fully, to not wait to be happy, and to either find solutions to or walk away from toxic stressors that are dangers to their mental and physical health.
If public therapy through prose ends up being a niche skill that I can use to give back in some way, then I hope I am fulfilling my resolution. I am thinking about even more ways to do more than that, but find myself cautiously waiting again. This time, the wait is for the next set of scans to tell me whether I’m taking a slightly longer road and milking my current regimen longer or the shorter one that leads me to the second of only two non end-of-line standard of care treatment options I am eligible for.
In the meantime, I’m just telling my story through this blog and giving where I can to a few causes. It occurs to me that I have a lot of nice work clothes that are just camping out in my closet unused right now. I want to donate a chunk of it to local tornado victims. I know I should, but I still find myself hesitating. All of those clothes are part of an identity that was integral to my life for so long. Getting rid of them is just another step toward admitting the finality of everything I am going through. It’s a difficult pill to swallow.
Identity aside, I realize that I’ve been able put more of my authentic self into this blog and into raising my children than I was ever able to always do in my career. And it won’t be my career that I am thinking about on my death bed.
I came across a video of a speech this morning on my colon-town groups that aligns fairly closely to my experience so far with this disease. It breaks you. In so many ways. In so many false hopes and scans. You can cry. You can be angry. You have to feel the emotions, not bury them. But no matter what, you can’t give up. You have to keep fighting, you have to keep advocating.
I have to keep going for as long as I can and use what has been broken in me to shine a light and help others. While the analogy he uses might have also seemed trite to me in another context, it takes on a whole new meaning when it’s coming from someone who I know,-like me- has spent some time staring into the abyss of this new reality.
If you have 18 minutes to spare (or part of it), here it is.
If you don’t, the following song lyrics from my favorite band mirror the end-point quite nicely:
And you know when it’s all gone/ Something carries on
And it’s not morbid at all
Just that nature’s had enough of you
When my blood stops/ someone else’s will have not
When my head rolls off/ Someone else’s will turn
But you can mark my words, I’ll make changes to earth.
While I’m alive, I’ll make tiny changes to earth.
Frightened Rabbit, “Head Rolls Off”
Wherever you are in life, it isn’t too late to find purpose. Or too find some way to feel truly fulfilled by what you are on this earth doing. We all have something uniquely ours to offer and ways to use them make tiny changes in this world.
While am proud of myself for having the courage to write this blog (though I admit that I am woefully in need of a professional editor), it will never hold a candle to my best “tiny change” in this world- my children.
They are all so amazing, and all so different. But the best thing of all is that they are all good people deep inside where it matters the most. I hope that what we have done and will continue to do as a parents will give them the courage to do the right thing in a tough situation, and to always use their unique talents and quirks in the best way possible.
I hope that I can be brave enough to complete this journey in a way that teaches them that emotions are okay, but that giving up is not. I hope that I have that strength. My mother showed me by example how giving up only makes things worse. I can only hope that I leave an example for my kids based on the opposite approach.
So… only six more months left in this year. I have now marched 10 months of my life toward the median life expectancy for a stage IV colon cancer patient of 27 months post diagnosis. I expect that the next six months will go as quickly as the first six. I only hope that I have the health and courage to continue to live and experience each remaining day as much as possible, and that I will continue to stay as true as I can to the promises I made in January.