ducky doolittle || seeking joy + wellness while surviving cancer

Tag: surviving

Waiting For Cancer Treatment / Part 4

Waiting For Cancer Treatment / Part 4

I’m doing a little better. I am finding that more peaceful spot inside me where have given in to the fact that life will never be what it was. Things are different now. If I want all the good things life has to offer I must […]

Notes To Myself: How Not to Fuck Up My Body’s Healing Process

Notes To Myself: How Not to Fuck Up My Body’s Healing Process

I am a dumb workaholic who tries to do too much every day, hence this note to my future self. I’ll add to this and refer to this to try to keep myself from being an uncontrollable nut after I have my surgery. Wish me […]

Waiting for Treatment / Part 3

Waiting for Treatment / Part 3

Yesterday I completed all the pre-surgical appointments. As soon as we got in the car I called the desk where they are to schedule my surgery. Got the voice mail. Again. Fuck.

They may be hating me over there, but I am over it. I left another message. This time I told them “I have achieved EVERY obsticle you have had to scheduling this surgery. The surgical urologist is ready to coordinate the times with my surgeon.” It’s so frustrating because she told me she was speaking with the surgeons to get it scheduled a week ago.

I hung up and felt instant frustration because I have done everything I could do. I have nothing left to do. I also had this feeling that I will spend the rest of my life waiting. Now I am waiting for surgery. I’m waiting for more pathology reports and cancer staging that will come immediately after surgery. After that, I will be waiting to heal. I am waiting to learn how my body will change. Will I need radiation? Chemo? I don’t know. I am waiting to find out. Eventually, I will see an oncologist every 3 months to monitor my body. If I am lucky I’ll spend the rest of my life seeking and waiting for NED (no evidence of disease) reports.

I have resigned to the fact that I can’t sit here waiting. I have to make the most of every day. I have to change my mindset. I am not sure what that means yet, but I’ll get there.

Tuesday was my hardest day since I was diagnosed. It started with a mammogram. I walked into the office and they told me this was a woman’s clinic and my husband could not be there. Yet there was a dude standing at the counter. I pointed to him and said, “What’s he doing here then?” They tried to tell me he was there for some other procedure. Needless to say– I kept my husband by my side.

Why would you tell any patient that the person who cares for them enough to come to an appointment with them was not allowed to be with them in the waiting room? Men get breast cancer, men get mammograms, men love women who need mammograms, and you can’t look at anyone and assume their gender. Their practice is antiquated. (My breasts scans looked great tho!)

Next was my pelvic CT scan with contrast. Contrast is so gross. I had drink fluid. More fluid was put in through an IV. The IV fluid is hardcore. When they initiate it your body turns hot, you feel like you are gonna pee (so weird!), and you get this metallic taste in your mouth. I had this done endlessly when I was a child.

Perhaps it’s more uncomfortable than painful for most people? For me, it’s very triggering. It’s as if I can taste a nightmare that I actually lived if that makes any sense? I taste the needles they put in all my veins, one by one until they all collapsed. I can feel the IVs they put in the tops of my feet after the exhausted the veins in my arms. I remember the bruises and residual pain from the needles. I remember the Pakistani doctor who grabbed my arm tightly, pinned it down and threatened to hit me because I was a noncompliant seven-year-old child. I remember the hospital elevators, halls, rooms, the spots on the ceiling tiles, the neon light bulbs, the patterns on the hospital gowns… all of it. All those memories exist in the taste of contrast fluid.

Through this, the medical pros that were administering the CT scan could see I was distressed. I am alone in the room, but they can watch me on the little close-up camera above the CT table.

I lay there. I am silent. The tears run down my cheeks, through my purple hair at my temples, and onto the pillow under my head. When I got up there were purple teardrops on the pillow.

“Are you doing ok?” they ask.

I lie.

I can’t reconcile why I still cry over long gone pain and why these tears feel so humiliating. Is it the heat of the contrast fluid? That someone is doing things to my body against my will? Is it my lack of self-control? Is it that my body had betrayed me again with illness? I don’t know.

I have started to compile resources for myself through time, but I can’t help but notice how none of the medical professionals I have seen has had a single mental wellness conversation with me or a single resource to share. You would think any doctor office would have a printout, a pamphlet, or a phone number one can call for help through this process. Instead, they all have pharmaceutical pamphlets on injectable weight loss drugs and fertility. It’s fucking frightening.

I ended the day with more blood work and a medical clearance where they found I have been peeing blood. Who knew?

Not me. I think with all the discomfort and pain, I can’t even recognize where it’s coming from. So now I am on antibiotics, I am pretty sure I’ll get some of my energy back after I complete this round.

So what does today bring? My last cycle has arrived. I thought I might throw a party and celebrate this day, the last hurrah of my little uterus, but mostly I just feel unwell. 🙁 Grrrrrr…

I do have an appointment with a naturopathic doctor today to seek answers on how I can heal and care for myself after surgery. My sister delivered her well-researched list on actions I might take to deal with abrupt surgical menopause. I think I’ll work that list over this evening.

To my family and friends… you have no idea how much your letters, packages, tweets, and replys mean to me these days. I know I am not the best communicator/responder, but I am so thankful to not be alone through this. I love you.

(Photo: Me and my husband.)

Sexual Self Care / Hysterectomy WTF?

Sexual Self Care / Hysterectomy WTF?

My surgeon said no sex for six weeks. I made her qualify that by asking, “No penetrative sex, right?” She said, “Yes, nothing in your vagina.” Ok. I can deal with that. Y’all know sex is an important part of my life. Affection is equally important […]

What To Do While Waiting For Cancer Treatment / Part 2

What To Do While Waiting For Cancer Treatment / Part 2

I am still waiting for my surgery. In the meantime, I do art. I use these beautiful markers that have tips like paint brushes. I have two crochet projects. I catch up on TV show in chunks. Thankfully my husband has a real knack for […]

Ways in which I am Similar to a Stray Cat

Ways in which I am Similar to a Stray Cat

duckyGah. I’m having hard days. Days so full of stress that my body hurts. My muscles hurt. My brain is tired. I get up well before dawn and crash out early in the evening. I manage to keep my spirits up most of the time, but then I have these moments where I will swirl away with thoughts and fears.

I am trying to perfect the art of pulling my mind back to the positive. I am outlining lots of “happy places” I can take myself to when my thoughts run away. I can go to a petting farm, to the cabin where we honeymooned… I have yet to be able to take myself to any of these places when I am in a scared state, but at least I know where I am supposed to go. That’s a start.

The appointment with my surgeon was hard. I like her. She’s tough like me. I trust her.

I’ll be having a radical hysterectomy. (It’s uterine cancer.) I wanted to keep my ovaries so I could maintain some hormonal balance, but it’s too risky that they too will bring more cancer if not removed. This means I will experience abrupt surgical menopause. I will not be able to treat that with hormones as hormone replacement will make me vulnerable to cancer in the future. They will take some lymph nodes too.

She has explained to me that the birth defects will make my surgery much more complicated. I had my ureter tubes (the ones that go from my kidneys to my bladder) surgically repositioned when I was a child. There is scar tissue from past surgeries. They don’t know where my ureters sit now. This means I need a CAT scan to find them. Then we will need a urologist on hand during the surgery in case my bladder has adhered to my uterus or some other issues arise. Plus they will drive tubes up my urethra, through my bladder, and into the ureter tubes so they have a lower chance of damaging them during surgery. It will be a 4-5 hour surgery. Once they have removed all of these parts they can assess my cancer and tell me what stage it is. That will determine if I need radiation.

The whole time the doctor explained this I was choking back vomit. I have so much residual trauma from those past surgeries that I get nauseated and freaked out.

Beyond the actual surgery, I worry about other things… like what impact this will have on my job, my ability to work, and my ability to care for my family. I am reading stories from other survivors to try to figure out how long it takes to heal from this surgery.

I’d be lost without my husband. He’s a rock through all of this. He comes to every appointment, helps me take notes, he stays positive and encourages my intense practices of self-care. I have lots of love and amazing emails and messages from friends that I need to respond to… forgive me if I am a little slow right now. I am a bit like a cat when it comes to being unwell. I want to hide under a car, rather than be loved. It’s horrible I know. It’s also why I am writing here… I am trying to let you in.

I continue my yoga practice. I play games. We built a little cart full of things to do when I am feeling bad. It has lots of art supplies and comfort things like my heating pad. I don’t want advice on cancer or herbal remedies right now but if there is something you think should go in my cart, please let me know. Tell me about your favorite video games for iPads, good books you are reading, and art projects. Giving me advice on how to stay distracted and comfortable are very welcome.

What To Do While Waiting for Cancer Treatment

What To Do While Waiting for Cancer Treatment

Last week I publicly shared my cancer diagnosis. That was scary as fuck. Since then my husband and I went to a follow-up appointment with my first surgeon. He set us up with the next surgeon. She is supposed to be good, uses robotics and is as […]

The Daily Stoic: 366 Meditations on Wisdom, Perseverance, and the Art of Living

The Daily Stoic: 366 Meditations on Wisdom, Perseverance, and the Art of Living

Thoughts are things. Thoughts become realities. These days I am looking for every advantage I can create. I have always found the interpreted philosophies of Buddhism and Stoicism to be very innate practices for me. But there is always more to learn in life. The Daily Stoic: […]

The Importance of Self Care

The Importance of Self Care

Photo of Ducky by JoI can’t tell you much about Jo. She was a Holocaust survivor, having been freed from Auschwitz concentration camp in her early teens. She couch-surfed through Europe, hopped a boat to America, and eventually landed with her extended family in New Jersey. When I met her she was in her 80s. She was retired and had developed a passion for photography. She wanted to take my picture. I let her.

We developed a friendship. We would talk about art, drink tea, and find good food together. Every once in a while I would see a little bit of her pain as a survivor. Having come from a rough place myself, I appreciated it when she would be vulnerable enough to allow me to see it.

One day I arrived at her house to find she was wearing her camera strap with her wrist tucked in, like a sling. I asked her why.

She explained that she was suffering from a shoulder injury.

I asked her if she had seen a doctor.

She had.

She explained that they wanted to do surgery but she was not going to do it. She did not want to spend the estimated 5 days in the hospital.

I totally understood. When you have experienced institutional trauma as she had, being confined and not having control of your moments and days can be unbearable. It’s panic-inducing.

By this point in my life, I had been trained as a patient advocate. I had been spending days and nights in the emergency room with domestic violence and sexual assault survivors. It was my job to sit with a patient, help them understand their medical and legal rights. It was my job to give back some of the power that had stripped away from them by trauma.

In an effort to encourage Jo to care for herself I offered to go with her to the hospital. I offered to sit with her, by her bed, 24 hours a day, for all the days she may need to stay. She declined my offer.

I respected that her body belonged to her. I reinforced that fact that if she ever changed her mind, I would be there. I was ready to care for her.

When I left Jo’s home that day I had this overwhelming sense that if I could not care for this survivor, then perhaps I should learn from her. I made a promise to myself that if ever I was in need of medical care I would not allow my past trauma and pain inhibit me from seeking that care and submitting to the treatment that would give me the highest quality of life. As a form of revenge against the world and all the pain it has caused Jo, I would work to only take better care of my body.

Today I give thanks to Jo. She taught me how to be stronger and how to take better care of myself. When my body began to bleed and bruise it was my memories of Jo that made it possible for me to push past the tears and fear and achieve my cancer diagnosis. I will draw on this strength as I move through treatment.

(Photo by Jo.)