Life, Liberty & the Pursuit of Happiness
On July 3, 2015 I swallowed my last pill of chemotherapy. Fireworks were flaring in the background. The smell of sulphur reminded me that the neighborhood, the nation would be celebrating our independence. I, too, anticipated celebrating the end of my 8 months of treatment for cancer. Well, I had been declared “cancer-free” 7 months earlier, but I would be free of the poison that was to combat any guerrilla cancer warriors in microscopic form.
I smiled wanly holding up the empty bottle. “Adios chemo! Bye Bye Cancer!” I wrote on Facebook. Cheers from friends and family. Comment after comment of concern and encouragement and celebration. Raise a glass! And I promptly threw up, fell into my pillow, and in between fits of dry heaves and night sweats, I slept.
In the morning, red and white and blue everywhere waving I stumbled. A friend’s 4th of July party. I couldn’t eat. I searched for the horizon to steady myself as chips, corn, dogs, beer floated by. I wanted so much to be well. To be able to celebrate, but all I could hope for was to maintain steady. Another friend who had been through the thick of chemo and recovered, spotted me there and grabbed hold of me like an anchor. With the intensity that only another cancer survivor can muster: “At the end of chemo, every day will feel better. You will grow stronger as the days go on and will never remember feeling as good.” She also said that she never felt the quite same after treatment. My oncologist told me the chemo would still be actively working in my system for 3 months following my last infusion. But, what did that mean? What would that feel like?
12 years ago I spent part of a summer in Senegal, West Africa on a Fulbright grant with some wonderful teachers, now friends. There, I met my friend, Abdou who is a prince among men. Abdou is an English professor in Dakar and he is now on Fulbright here in Kalamazoo. We visited a couple of weeks ago and it reminded me. Senegal was once a French colony and rather than having the fiery independence that the American colonies had, Senegal boasts a non-violent transfer of power from the French to the Senegalese in the 1960s. There were worries of eruptions of violence, of resistance, but the imperialist government seemingly left without incident. Freedom!!! Freedom!!!
Yes, cause for celebration. But, it turns out that “returning to normal” was not possible. What is normal after hundreds of years of occupation? What of French life has been assimilated into Senegalese culture? What is ours and what is theirs? When the French left the government buildings, they took everything that they brought – including the toilets. I may have gotten this wrong, but I remember being told that the French extracted the toilets from the bathrooms – they brought the plumbing, they took the plumbing! Doorknobs, ink from typewriters… the things that make their office spaces function – gone.
This is how I felt post-chemo. Not that it is appropriate to compare undergoing chemo to colonialism, but I could taste the passion for freedom, freedom from constraints, from occupation of an outsider so I can return to MY life. I expected to pick up where I left off. To jump back in control, to be the boss of me again. I could even be better, stronger, healthier as a result of this experience. I survived the treatment relatively unscathed. Before treatment I was told the cocktail chemo could kill me – not good – or I could lose my hearing, my sense touch, my digestion, my mental acuity, my hair and the list of possible complications goes on. It could have been a blood bath. But, given everything I was up against, I would stand by “relatively unscathed.” It was a non-violent independence with much to celebrate.
Like in Senegal the aftermath of this independence did not reveal smoldering craters and collapsed buildings. It was nothing that dramatic. I’m discovering the casualties as I go. And it’s disconcerting because I don’t quite know yet the extent of the damage until I trip over it, nor do I know what is permanent and what will just take time to heal. My plumbing was broke, I couldn’t seem to open the doors without doorknobs, and I didn’t have the tools, the time, the energy to write. My infrastructure was compromised. (OK, yeah, I do have some hearing loss with hearing aids recommended (to the tune of $5k for the low end) and that shouldn’t improve.) I was elated to be done, but there was no “back to normal.” I was different. I am different. I am changed. Once you have been occupied you can never go back to being who you were before.
It has been months since I’ve written. I had been craving the post-chemo recovery time for writing about this experience, for filling in all the gaps, but, instead, I just struggled to recover. Maybe it was the way the chemo left.
Round 6 of chemo hit me hard. It did not slip away in the night. It pulled out the infrastructure as it left. On the first day of Round 6 I ended up developing an allergic reaction to the Cisplatin drug as it was pumped into me intravenously. I was meditating with a tape – telling me to send my attention to my feet, calves, knees… but I kept feeling my chest tightening. Damn it! Focus on the thighs, abdomen, left hip… chest tightening. Damn it! Focus on the… and then it occurred to me. Hmm. This tightening in my chest, hard to breathe. Maybe I should say something. John darted into the nurses room – “There’s a problem with my wife! “Something’s wrong!” – and next thing I knew my lips were swelling, my hands and feet were itching uncontrollably and the drug was pulled, replaced with large doses of Benadryl and I was in La La Land… “I have pressure in my chest, and it’s in the shape of a heart,” I kept telling John. “It’s in the shape of a heart.” I don’t know what that allergic reaction did to my system, but after round 6 (I continued with the nightly Temodar drug (Temozolomide) that helps the Cisplatin cross the blood/brain barrier), I never felt quite the same.
It could be the actual effects of the previous rounds were masked and I was finally experiencing the true cumulative effects of the chemo. See, after each of the 3 previous rounds they shot me full of Neulasta, a drug that goes into my bone marrow and boosts my white blood cells. But that was only to get me well enough to endure the next round of chemo. After Round 6 there was no option for the white blood cell boost, so my immune system dropped white blood cell count week after week until I ended up wearing the “I’m sick and look like I have consumption” mask. It leveled out eventually, but I did not bounce back. I petered back and forth, sputtering here and there, sprinting and celebrating when the energy surged and collapsing when depleted. I reminded myself that the chemo was still actively working to do its good (and bad) work. Be patient.
But I’m not so patient when it comes to my work. Returning to work full-time was… hard? It’s not that I can’t work or shouldn’t work. I haven’t lost my skills or abilities – the quality is not compromised. I just can’t do all the extras I used to do. Part of it is that I haven’t had a chance to dig out yet. I am a year behind in everything. Bills, projects, thank you notes, piles everywhere. Even the shovel is buried. Where to start? It’s also – what am I capable of now? My work is and always has been central to my identity. But my relationship to my work has changed. Must change to maintain my healthy living. I get my things done “no matter what.” There cannot be a “no matter what” anymore. There are some matters. Sometimes the door looks fine, but when I try to open it the knob comes off in my hand. I “do not cut corners”. But how do I fit everything in the box, all the important things that are too big to fit without folding the corners? It’s letting some of those things go.
It feels like I have spent the last year walking on hot coals across the desert and have returned home with tender feet. The ground feels rougher than it used to before my walkabout. Now, 4 months out I am looking at the terrain anew and my feet are starting to heal.
I have so much I am grateful for. I am alive. I am free. And I am pursuing my happiness however hobbled I may feel in the process.
And you? How are you pursuing your happiness?
Hey Al, just read your blog entry. It was gut wrenching. I have a lot of thoughts and feelings, but I ‘ll simply leave you with this. I love you and you are in my daily refuah – healing – prayers. Lynn and I have been talking about you and she wanted me to send you her love and support as well. We both miss you and hope to see you soon. If you should ever need a Rabbi, you know whom to call. Shalom.
Thanks, Misha! I should be in Austin in February and would love to see you and Lynn!
Such an amazingly beautiful post. The metaphor is so powerful and your honesty so profound. Thank you for sharing all that you are going through and for your beautiful expressive words of truth and endurance. You inspire me deeply.
And you, me.
Another beautiful piece. I hope people reading this are sharing it out so this fantastic writing can reach a wide audience.
I never cease to be amazed how much I learn from you sweet friend. Your insights, observations and narratives are so beautiful, poignant and right on the mark. You may be forever changed but you are forever loved all the more. I can’t wait to see you and give you a big hug!
Thank you Ruth!
Glad you are feeling better. I have found that if everything does not fit in the box,
get a bigger box. One that lets you do the same things in a new and different time frame.
Lots of love and thinking about you.
Thanks, Cous! You are right about the box and the time frame. That’s what I’m learning!
So love your writing and your ability to not only move me but suck me in like a wonderful undertow that makes me feel all your joys and your pain. So glad you’re back at it and please keep putting efforts like this before all the other stuff!!!
Thanks Veronica! Good to be back at it!
Incredible post, Allison. Not a day goes by when I don’t think of you and picture you well with all of this behind you. But I have been amazed at your strength through the pain and marvel at how even in the darkest times you remain an inspiration. You’re a gift.
YOU are a gift to me!
Allison, I just used you as an example in a performance workshop I co-hosted last weekend at FARM (which means you were at FARM). I was talking about how you’d share a gripping story — would she make it off the mountain alive? — then, a moment of silence, and then the song. The story wasn’t what the song was *about* per se, but by telling it first, it enriched the meaning of the song, our minds would make the connection even though you didn’t explicitly tell us to do so.
You are now off the mountain safely, because you are writing about it and sharing this amazing story. Now the moment of silence; next the song. I continue to think about you and send prayers and good wishes. xo
What a great story! Thanks for sharing the FARM experience. Wish I were there – maybe next year! I do feel like writing about it helps put the mountain behind me – thank you for the metaphor!
Allison, my heart goes out to you. Its been a haul for you and John. xoxoxoxox
Yes, a haul – but starting on the upswing… Thank you friend!
Please research cannabinoids to help with recovery and maintenance.
Thank you so much for your kind words, encouragement, and incite. I realize in my haste to “get this story out” I didn’t edit this to ensure I said exactly what I meant… I mean,… things ain’t as bad as this post clearly seems. There are good days, great days, but it’s the little surprises that come with a tattered immune system that catch me off guard. I think I’ll make some tweaks to this.
Thank you thank you, dear ones!
I cannot begin to imagine what you and your family have experienced and continue to experience. All I can say is: “Thank You”. Your honest and heartfelt posts have touched me, they have changed my perspective on many things. This in turn has changed my actions toward others and I have shared you and your strength with others, and they with others… You, in your own unique way, have been a light for more people than you can ever imagine. With love, Alicia.
Wow. I don’t know what to say. What a gift to share this with me. Thank you, Thank you!