“Love is letting go of fear.” – Gerald Jampolsky
Yesterday at a friend’s house I opened one of those books of quotes and this was what greeted me. It seemed appropriate. Today is Valentine’s Day, so I have been thinking a lot about love. And this past year I have been dancing a lot with fear. A year ago tomorrow I started my first round of chemotherapy. I have had a complex, layered relationship with fear this year. Being in fear. Avoiding fear. Accepting fear. Embracing fear. Releasing fear.
And then there’s love. Love. At a ceremony today a wise woman shared: “Love is the absence of judgement and the awareness of compassion.” And, I thought, Love is the opposite of fear. A year ago today, in anticipation of the coming five months of chemo, I threw a “Kicking the Sh*t out of A** Cancer Party”. I knew I wanted to sing and dance and celebrate all things joyous, and mostly to be surrounded by the people I loved. It was a scary time, carrying all the horrible things that could befall me as a result of this chemo and the anxiety of the impending nausea and sickety sick sick sickiness. Something inside me knew that being in community with those I loved would help. And it did.
My family. My friends. Dear dear friends who have had my back since high school hopped a flight from DC with a moments’ notice. Friends drove across the state in a blizzard.
When love meets fear and accepts it, love wins and fear fades. And it comes in the big moments: walking the plank, weathering the bad news… but it is also in the daily offerings: in a breakfast waffle, the coziness of a cafe, and the beauty of a nature hike. It has been challenging for me to write recently. There is so much I want to share, and so much thanks to offer and I haven’t known where to begin. But on this glorious day, in the spirit of love, I just give what I have to give. A start. A new start.
I hold such gratitude for my friends and family who have stood by me this year and showered me with love. It really really really makes a difference.
Happy Valentine’s Day to all of you eminently lovable loves!
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?
I’m a songwriter. And sometimes songs come out of me and it’s not quite what I intended, but what the song demanded. A few years ago a song came to me. One of my good friend’s battle with cancer took a turn for the worse. This followed several other friends having run ins with cancer and my beloved aunt having died from it years before. The song that came to me was – “FU Cancer!”.
Truthfully, what came to me was the full monty, not the initials. In 26 years of songwriting I had never used an expletive, but this song kept returning with the biggest cussing out it could muster. I couldn’t seem to tone it down. Cancer did deserve a good cussing out, though, and it felt great to sing.
But… I didn’t finish the song. Fast forward 3 years… 2 weeks after one of my friends lost her battle, I was diagnosed with my crazy rare cancer. I was told my chemo could take my senses of touch and hearing, making it pretty hard to be a singer/musician. So, 2 days before starting chemo we threw a party to celebrate all our blessings – friends, singing, playing and my hair! That morning, with a different perspective, I finished the song. John had never heard it. I pulled aside my musician extraordinaire friends Annie & Rod Capps and showed them what I had. They listened, we walked on stage and played it. John, too, learning as he went. It felt so empowering to sing it, and to hear the room full of friends chanting along like an anthem. It was like a battle cry, a victory cheer. And it bolstered me up right into chemo.
Many friends asked if they could get the song for someone they love with cancer. They thought it could lift spirits. Not that I felt like doing much of anything after a round of chemo, but If I was ever going to offer this song to the world, I’d better do it while I could still hear and play guitar. So, 2 days before my 2nd round of chemo, we recorded it.
(The party & recording session are captured in the trailer to the music video at youtube.com/allisondowney). The act of creation is life affirming. The act of singing is an expression of love and joy. As much energy as it cost me during chemo to take on a recording session, it offered me back –myself. When cancer comes it takes over everything. It’s hard to feel like yourself when you don’t feel like yourself, or look like yourself, and can’t do the things that make you feel like you. Creating, singing, recording – this IS me and it felt like I took the reigns back from cancer for that day.
In editing the song, and listening to it I realized that the song is not just about cussing out cancer, but as a woman fighting cancer it is an act of defiance, an expression of empowerment over cancer. Laughter and music are healing. To laugh and sing in the middle of hell is defiant. The song’s final title became “Can’t Take My Heart (FU, Cancer!)” – yes, I’m still cussing out cancer, but the message is that cancer has taken much from me and may take more, but it can never take my heart.
This sense of empowerment is something I want to share with anyone else dealing with the devastating effects of this disease as a survivor or caretaker. If this message could give a lift (or even a laugh) to someone you know, share the song (censored versions available) and/or video with them. You can listen to the song here. And, Sing it, Baby!
Father’s Day. The first time I really thought about fatherhood was when my older brother, Tom was about to become a father. I saw him transform. He built this cradle for soon-to-be Cate and for my sister-in-law as a surprise. He’d never built a cradle, and I think he may not have been clear about the approximate size of newborns because the cradle could have fit a family of four. (It later held a family of Cate’s stuffed animals). Continue reading
Dear Lady in the Steam Room with the Menthol,
When you asked, white towel wrapping your head and soggy torso, about to enter the steam room, “You don’t mind if I use menthol” (A statement disguised as a question) you were already prying open the moist door. You didn’t wait for my answer but I coughed up – “Just use a little.” You brayed, stopped short, door open, snapped “Well, I can’t only use a little. It’s a thing. I can only use the same amount.”
“OK, no, please” Continue reading
Don’t tell my husband, but I heart Don Draper. Not just Don Draper, but Jon Hamm (the actor who plays Don Draper in the hit TV series Mad Men) as well. Of course. I heart them both. 10 minutes from now the final episode of Mad Men will air. I am shaking with anticipation that is part thrill at finally finding out what happens to all the characters, and part grief at bidding farewell. (For those of you who know nothing of Mad Men, there is some relevance in this post to my cancer journey)
I was a late bloomer when it came to my Mad Men obsession. Addicted friends were pushing, but I didn’t need another series. I was engulfed with the merriment of Breaking Bad. Why would I want fluff like advertising? Then one day I was stuck on the couch with a cold, John was gone and you’re not supposed to “Walter White” alone. So, a flask, I mean a flash of incite: I could try episode 1 of Mad Men – just to see what it’s like. I could watch just one and never crave another. So, I watched. And …
I was hooked. There was no way I could be a “social Mad Men-er.” No, I was a full on Mad Men-aholic. It wasn’t just because – well, have you seen Don Draper? No, there was more. I was horrified. The climate for the female characters (and African-American characters and…) was so abhorrent, so many scenes that left me thinking – I can’t believe they just said that, or did that. I couldn’t stop wondering about Peggy and Joan (the women working in a misogynistic ad agency). What would I have done in the same circumstances? What was it like for my mother at that time? Thank God for true social change, when years later the “normal” of the past is recognized as barbaric. Yes, we still have far to go – Mad Men reminded me of that, too. Regardless, I am so grateful to have grown up a woman in this day and age.
But back to Don Draper. See, by late October when I was a full fledged Mad Men junkie, I was going to have general anesthesia for the first time during a colonoscopy to take out a nasty hemorrhoid. This was my first surgery and I was nervous. BUT, Don Draper would entertain me for the two day recovery. Mad Men would be my medicine. Apparently, according to my husband, when I came to after surgery, but was still under the influence, I asked for Jon Hamm. “Where is Jon Hamm? I was told he would be here! I love Jon Hamm!” A few minutes later the surgeon said, “I’m sorry. But it’s cancer.” When she left the room, I blurted out, “Seriously? I can’t get a respectable cancer like breast cancer or lung cancer?! I have to get ass cancer?!” Immediately followed with, “Is Don Draper here?”
Three Days later we walk into the oncologist’s office and there on the wall from the magazine bin Jon Hamm is smiling at me. I said to my John, “This is a good omen.”
Two weeks later, my mother, also a Don Draper fan, promised that after my surgery we would go on a Mad Men bender. And sure enough, at an Ann Arbor hotel, in between my vomiting episodes, we melted into the world of falling silhouettes and hard liquor. It has been such a wonderful escape for me – both entertaining and thought-provoking. OK, I could have done without last week’s (SPOILER ALERT) “mother dying from cancer” episode, but I forgive them. Spending more time than I like to in bed the last 2 weeks recovering from chemo and the flu I surrounded myself with all things Mad Men – The writer’s interviews with Terry Gross on NPR’s Fresh Air, the latest article on CNN about Jon Hamm, and so on. Hopefully after this run of chemo I won’t need another imaginary world to disappear to. So for now, I’ll just bid farewell with a toast to Don Draper and all the characters I love and love to hate in Mad Men: Bottoms Up!
Saturday, while I was sleeping in bed from the flu from the neutropenia from the chemo for the cancer …
My bed shook me awake. Yes, I did say, my BED shook me awake. I was quite sure my bed was moving, although after having been sickety sick sick sick in bed for a week and one of those day/nights was not in my bed but a hospital bed, my husband would say I wasn’t the most reliable source. However, my bed was indeed shaking. I leapt out of bed (again, something I haven’t done for quite a while) onto our hard wood floor, which was also shaking as if it were neither hard nor wood. Continue reading
The sucky thing about chemo is…
OK, I know that in the last post I just made friends with my chemo. And I know you read the title of this post and are like, “What? Chemo’s sucky? I never knew!” However, I have new information. See last Friday I posted a picture on Facebook of my little family after the 5K race, a fundraiser for my son’s elementary school. My son, 6 ran/walked his first 5K and I ran/walked it with him. Continue reading
Last post I bemoaned Neutropenia (low white blood cell count) and the effect that it had on my chemo schedule. Yes, it was a bummer. But after a few days at my retreat spot I felt better. The following week, my numbers jumped from 1000 to a whopping 1400! Still below normal (3000), but enough to push forward with chemo. The concern is that with a diminished white blood cell count my immune system is less able to handle the toxicity of the chemo. Continue reading
I was all prepared for Round 3 of Chemo. Prepared? No, steeled for it, braced for it last Monday. I go for a blood draw every Monday morning to check my White Blood Cell count, red blood cells… Well. I started with WBC at 3000 – normal. Then the next week it dropped a little. A little more then next and by Round 2 – it was at 1300. 1500 is the low point of normal and 1000 means that the immune system is too compromised to continue chemo. So, Monday morning Round 2 – at 1300, I was borderline and we decided to go forward anyway. I had a really rough chemo that round, but my numbers still stayed at 1300 the next week. I have 1 week on, 2 weeks off. The 2nd week off my numbers shot up to 2400 and I was thrilled. So, it was a no brainer that going into Chemo Round 3, I’d be fine. But… no. Apparently I was all dressed up and no place to go.